This sounds awful but this is the 4th time I've been on disability. The other 3 times were related to bipolar and 2 of them were triggered by stress. One of the earlier times was short, 4 or 6 weeks. The other two were long, 4 months apiece.
Every time pretty much has been a fight. The first time I was turned down for a reason that I couldn't appeal because it was valid (I was about 3 weeks from eligibility) and my company overturned it and I got a surprise check. The 2nd time whoever my coverage was through tried to make life a living hell. They kept trying to play Dr. Brain and I against one another, telling her that I knew to put my case number on all paperwork including hers when I didn't eve have a case number assigned per my case manager. Once they denied the whole thing say she didn't include some information in box 15.c.123.3f or something. It was there, clearly marked with an arrow, written beside the box because of lack of space. I finally got approved for that one after I had been off for 2 months when I was getting so scarily sick that Dr. Brain had me come to her "real" office (back then I saw her where I see Dr. Mind; she was there 3 days/month) for an extra visit that wound up being 3 hours long because after I cried out my frustration with disability and she realized what they were doing and then found ways to adjust my meds to help me to try to sleep after not sleeping for so long I felt like I might die she called them and pretty much completely told them off, including that since my claim was clearly valid if they did not approve it and reduce the stress on me that she would simply keep me off work longer to cope with the stress. She was livid; she also called HR at my company to tell them this was the single worst disability claim she'd ever had to work on. Soon after I was approved. The 3rd time was a mess because they demanded every note from every provider including psychotherapy notes. Psych notes are generally considered off limits to everyone. Dr. Mind was very upset about this, saying he had never realized psych notes to anyone ever in his many years in practice. But he did then because they wouldn't pay otherwise. If I went near a doctor, even just seeing Dr. Body for bloodwork, then those notes had to be sent in. To make it worse they insisted on having updates every few weeks from both Dr. Body and Mind and so I was constantly on a paper chase.
This time the insurance has been much more helpful and kind. However, my claim is still not processed despite today having been the planned day for review, because Dr. Body's practice sent a bunch of stuff not needed but not the sole note that was needed from him, the note for the day he took me off work. I called and was told the person who could send that was off today. After a great deal of begging I convinced them that since this paper was keeping me from getting paid and I have not been paid in weeks and that the paper was requested and they are having copier issues that just maybe it was possible to take 12 seconds to fax that in. The reviewer had told me that if she had that today she could do the review; the review remains pending so I'm not sure what that means. Then there is the nightmare of trying to get stuff from Cleveland Clinic. Two requests were sent there, one from the insurance that "didn't specifically say Cleveland clinic--did too as well as giving the specific names of doctors", and then other submitted by me which they decided not to honor because they only release up to the date the thing is faxed and ignored my "ongoing" statement. Yet they did not call me to tell me this; they claim they notified my case manager but since she hadn't heard anything I doubt that. The woman I talked to there was SO rude and condescending. She was clearly not going to help me not matter what and was enjoying telling me everything I did wrong, repeating things like she thought I wasn't too bright despite the fact that her answers didn't have anything to do with my questions. So I pretty much hung up on her so that I could rush around and get the whole thing faxed again, and then I'll have to request more records after appointments next week and on and on. I'm hoping to go back in a couple weeks but that's dependent on various things and these requests may get old. Oh well, whatever makes them happy. So that was how I spent a big part of the afternoon, freaking out. I was last paid for my remaining vacation time which ran out 8/12. I had some money saved for this but not as much as hoped for since I was planning/hoping to work for another 6 days before going on leave. And my case manager has been willing to go for weeks. Its just been incredibly hard; many things didn't want to fax, including everything that needed to go to Dr. Body's office and the main office for his clinic. Cleveland Clinic has no real desire to make this easier despite having a whole department that is supposed to be there fore these situations. Hopefully we'll get this done this week, but I'm not sure because Cleveland Clinic says that they may take 3 weeks. So I suspect I may get a determination for the days up to surgery, then have to wait for the days after. In reality that's ok, I guess; It means I'll be paid for a week or week and a half, then once Cleveland Clinic steps up hopefully I'll get paid for whatever portion of last week, along this week and next and from then hopefully I'll be back to work depending on my psychiatric condition. It's hard because when I go back I won't be paid for 2 weeks because I go back (if that's what happens) at the beginning of the pay cycle. I also have at least 2 days I have to take off soon after going back that will probably be unpaid because I have followup.
So this is all stressing me out immensely. This makes sense given that I'm due a pretty big amount of money at this point and I would like to pay bills, buy food, and still have enough to not be constantly worrying.
I can't believe the insurance is being fabulous and the hang up is basically secretarial........Maybe I'll get Dr. Brain on it.:)
Wednesday, August 31, 2011
Sticks and stones
I realized something in the shower tonight (besides how itchy my steristrips are getting). Words hurt me more than physical pain. It's leftover from growing up, but if I had to number the things that have hurt in the week since my surgery they would be 1) bladder spasms from the catheter when my pain med wore off too soon 2)the screwed up sleep patterns after the awake night in the hospital and then from vicodin indicued mania and 3) that jerk calling my a hypochondriac.
The first 2 make sense. The third, I'd like to explore. When I was 9 my father still pretended to be a good father. Clear up until I was 11 there were moments when things went well with my family and we had fun times. After I was 11 there aren't many good memories. But there was a time that my father would set aside time for us and play with us. My great-grandfather was a professional baseball player. He had taught my father a lot about baseball and so passing that along with a family tradition thing. At that age I was just as terrible at softball as I remain now, although my never learning how to play better all hinges on this one event. When my father played with us from infancy on per my mother he tended to overplay, demand a lot and then get mad when we cried. Well, my learning to catch a softball was one of those things where he had no patience. I finally got so I could catch a very gently thrown ball. Rather than gradually increasing this so I would succeed step by step my father decided if I could catch a gentle ball I could catch a ball thrown using my great-grandfather's fastball. Well, I couldn't. I saw it coming fast and put up both hands to protect my face. Snap went my finger. I cried of course, and my mother tried to get my father to take to have it checked since it was clearly broken. He refused. The next day the school nurse splinted it and told my mother what was needed to support it better (if it gives you any idea of how much anxiety I had at age 9 I chewed through the first, plastic splint and had to have a metal one.) When I would still say it hurt or was sore after a week or two my father started getting in my face and telling me that if I didn't stop complaining he would take me to the doctor and they would take me to the operating room and use a hammer to re-break my finger and is that what I really wanted just because I was a hypochondriac. Now, 3 months ago I tripped on vacation and broke 2 toes. One of those toes felt like it was broken twice (from wiggling it with my hand). I did not react in any way until someone asked if I was ok, and then I calmly said "I heard my toe break".I then put my plate down, hopped to the table, let someone get me ice and had my mother get me some vicodin, ate supper and then let someone tape the toes.Within 24 hours I was doing nearly everything I had been except not walking long distances. And that little toe, the one I broke more severely, still hurts if I bang it or bend it too much. So I am 100% sure that my finger, which needed to be set as it healed a little funny, was validly painful. But all I learned was not to complain. We've all heard about my broken ankle leading to my torn up knee combining to lead to my very torn up ankle, all with my pretending to not hurt. Another time we were canoeing, something my father did with us into my teens although this is the last time I remember going with him; don't know an age. He thought it was funny to find ways to dump us in the water. Once I had managed to avoid all dumpings. So when we stopped to rest he picked me up and threw me hard down into shallow water. I landed with my shoulder blade on a rock which made a deep, jagged cut. It needed stitches but he couldn't take me and explain how it happened. So I got a Telfa pad and peroxide. I have no idea what the scar looks like other than there is no chance there isn't one. I never told anyone about that until about 2 years ago maybe. I kept right on running and when sweat hurt it I just taped the dressing down. There were so many other times......missing school was a huge deal and subjected you to tons of hypochondriac comments. So I tried to never miss. In 2nd grade I tried so hard that I threw up grapenuts all over my phonics workbook. In 6th grade I totally topped that horribly embarrasing moment. First I was trying so hard to deny that my bowels were ready to explode and that I was terribly ill that I accidentally farted extremely loudly in class. Then to top it off I threw up in the lunch room, then fainted. I was so, so sick but not about to admit it so instead I did 3 of the typical 12 year old's most dreaded feats, all in a few hours time. I'm trying to think of other examples.......When my wisdom teeth came out my father took me. Some time in the last year or two he'd taken his girlfriend and she had no problems, just took the valium, had them pulled and was fine. Therefore I would be fine too. I specifically remember the oral surgeon telling him this was different, because of wearing braces and having an incredibly small mouth, my wisdom teeth were impacted and removal involved incisions, crushing the teeth, and extracting each fragment. I had several stitches and would need pain meds. Well, my father decided that there was no way I would need pain meds since girlfriend hadn't and he wasn't rewarding my being a hypochondriac. He drove me home and left me alone with no meds for hours then yelled when I was crying in pain when he got home and was furious he had to go back to town for the pain meds. He also got mad at me for eating the soft foods/baby foods that the doctor had suggested. I went back to school so fast that I got an A on my public speaking final despite nobody being able to understand the garbled mess that came out of my chipmunk cheeks because the teacher put it off as long as he could but the plan had been for me to make-up the final the next semester and that wasn't possible since I was in class. Both of my knee surgeries he would push the surgeon to clear me for sports in 2 weeks. The surgeon kept patiently explaining that I was a growing girl and not a professional athlete and needed time to heal. Even then the 2nd surgery which involved a several inch incision the dr. wanted me home in bed for a week with my foot elevated. I was in school 36 hours post op because my father thought if I was home I could care for myself and school was easier on me because I could elevate my leg and hobble around and nobody yelled at me for making a big deal out of nothing.
I am pretty sure that the worst thing someone can do is call me a hypochondriac. For one thing I struggle to not believe it. Dr Body, after we had a specific discussion about how abuse makes me lie sometimes and how to detect lying, has pointed out several times that I have a real illness that causes me to be more susceptible to other real illnesses, that just because a diagnosis ultimately isn't something highly painful doesn't mean I don't have pain sometimes, and that I have to make decisions to treat things even if I'm having trouble believing them. He made this clear, gently, when I needed a break from aggressively treating my asthma when I was semi-responding to meds. He told me that his criteria was simple: No attacks bad enough to need emergency treatment and no car accidents from fainting due to severe coughing. So simple and yet it honestly took my having an accident to get me to agree to treat the asthma, about 3 months after it started. The pain I am hoping to never feel again, all of that could have been so much easier if I'd seen a doctor sooner or agreed to treatment sooner that I did. My d&C wound up removing a huge amount of tissue from my uterus that was the major source of bleeding so severe it caused anemia. I let that happen for a year before I sought help. So often I have to let things become really big problems before I am able to believe myself and not hear 'hypochondriac, hypochondriac" in my head. That does a lot more harm than good. Yet even after all these years, even after being taught explicitly that because bipolar and the treatments I've been on have made my body more fragile because I've had many treatments that are very hard on the body, I never can just believe myself. I'm even embarrassed that I have had these abnormal cells and need to follow-up with ANOTHER doctor and more testing. I'm deeply grateful, but embarrassed.
It goes on and on and I am getting sleepy and it's ONLY 1 AM!!! So I'm going to change into sleep prep mode and we'll talk tomorrow.
The first 2 make sense. The third, I'd like to explore. When I was 9 my father still pretended to be a good father. Clear up until I was 11 there were moments when things went well with my family and we had fun times. After I was 11 there aren't many good memories. But there was a time that my father would set aside time for us and play with us. My great-grandfather was a professional baseball player. He had taught my father a lot about baseball and so passing that along with a family tradition thing. At that age I was just as terrible at softball as I remain now, although my never learning how to play better all hinges on this one event. When my father played with us from infancy on per my mother he tended to overplay, demand a lot and then get mad when we cried. Well, my learning to catch a softball was one of those things where he had no patience. I finally got so I could catch a very gently thrown ball. Rather than gradually increasing this so I would succeed step by step my father decided if I could catch a gentle ball I could catch a ball thrown using my great-grandfather's fastball. Well, I couldn't. I saw it coming fast and put up both hands to protect my face. Snap went my finger. I cried of course, and my mother tried to get my father to take to have it checked since it was clearly broken. He refused. The next day the school nurse splinted it and told my mother what was needed to support it better (if it gives you any idea of how much anxiety I had at age 9 I chewed through the first, plastic splint and had to have a metal one.) When I would still say it hurt or was sore after a week or two my father started getting in my face and telling me that if I didn't stop complaining he would take me to the doctor and they would take me to the operating room and use a hammer to re-break my finger and is that what I really wanted just because I was a hypochondriac. Now, 3 months ago I tripped on vacation and broke 2 toes. One of those toes felt like it was broken twice (from wiggling it with my hand). I did not react in any way until someone asked if I was ok, and then I calmly said "I heard my toe break".I then put my plate down, hopped to the table, let someone get me ice and had my mother get me some vicodin, ate supper and then let someone tape the toes.Within 24 hours I was doing nearly everything I had been except not walking long distances. And that little toe, the one I broke more severely, still hurts if I bang it or bend it too much. So I am 100% sure that my finger, which needed to be set as it healed a little funny, was validly painful. But all I learned was not to complain. We've all heard about my broken ankle leading to my torn up knee combining to lead to my very torn up ankle, all with my pretending to not hurt. Another time we were canoeing, something my father did with us into my teens although this is the last time I remember going with him; don't know an age. He thought it was funny to find ways to dump us in the water. Once I had managed to avoid all dumpings. So when we stopped to rest he picked me up and threw me hard down into shallow water. I landed with my shoulder blade on a rock which made a deep, jagged cut. It needed stitches but he couldn't take me and explain how it happened. So I got a Telfa pad and peroxide. I have no idea what the scar looks like other than there is no chance there isn't one. I never told anyone about that until about 2 years ago maybe. I kept right on running and when sweat hurt it I just taped the dressing down. There were so many other times......missing school was a huge deal and subjected you to tons of hypochondriac comments. So I tried to never miss. In 2nd grade I tried so hard that I threw up grapenuts all over my phonics workbook. In 6th grade I totally topped that horribly embarrasing moment. First I was trying so hard to deny that my bowels were ready to explode and that I was terribly ill that I accidentally farted extremely loudly in class. Then to top it off I threw up in the lunch room, then fainted. I was so, so sick but not about to admit it so instead I did 3 of the typical 12 year old's most dreaded feats, all in a few hours time. I'm trying to think of other examples.......When my wisdom teeth came out my father took me. Some time in the last year or two he'd taken his girlfriend and she had no problems, just took the valium, had them pulled and was fine. Therefore I would be fine too. I specifically remember the oral surgeon telling him this was different, because of wearing braces and having an incredibly small mouth, my wisdom teeth were impacted and removal involved incisions, crushing the teeth, and extracting each fragment. I had several stitches and would need pain meds. Well, my father decided that there was no way I would need pain meds since girlfriend hadn't and he wasn't rewarding my being a hypochondriac. He drove me home and left me alone with no meds for hours then yelled when I was crying in pain when he got home and was furious he had to go back to town for the pain meds. He also got mad at me for eating the soft foods/baby foods that the doctor had suggested. I went back to school so fast that I got an A on my public speaking final despite nobody being able to understand the garbled mess that came out of my chipmunk cheeks because the teacher put it off as long as he could but the plan had been for me to make-up the final the next semester and that wasn't possible since I was in class. Both of my knee surgeries he would push the surgeon to clear me for sports in 2 weeks. The surgeon kept patiently explaining that I was a growing girl and not a professional athlete and needed time to heal. Even then the 2nd surgery which involved a several inch incision the dr. wanted me home in bed for a week with my foot elevated. I was in school 36 hours post op because my father thought if I was home I could care for myself and school was easier on me because I could elevate my leg and hobble around and nobody yelled at me for making a big deal out of nothing.
I am pretty sure that the worst thing someone can do is call me a hypochondriac. For one thing I struggle to not believe it. Dr Body, after we had a specific discussion about how abuse makes me lie sometimes and how to detect lying, has pointed out several times that I have a real illness that causes me to be more susceptible to other real illnesses, that just because a diagnosis ultimately isn't something highly painful doesn't mean I don't have pain sometimes, and that I have to make decisions to treat things even if I'm having trouble believing them. He made this clear, gently, when I needed a break from aggressively treating my asthma when I was semi-responding to meds. He told me that his criteria was simple: No attacks bad enough to need emergency treatment and no car accidents from fainting due to severe coughing. So simple and yet it honestly took my having an accident to get me to agree to treat the asthma, about 3 months after it started. The pain I am hoping to never feel again, all of that could have been so much easier if I'd seen a doctor sooner or agreed to treatment sooner that I did. My d&C wound up removing a huge amount of tissue from my uterus that was the major source of bleeding so severe it caused anemia. I let that happen for a year before I sought help. So often I have to let things become really big problems before I am able to believe myself and not hear 'hypochondriac, hypochondriac" in my head. That does a lot more harm than good. Yet even after all these years, even after being taught explicitly that because bipolar and the treatments I've been on have made my body more fragile because I've had many treatments that are very hard on the body, I never can just believe myself. I'm even embarrassed that I have had these abnormal cells and need to follow-up with ANOTHER doctor and more testing. I'm deeply grateful, but embarrassed.
It goes on and on and I am getting sleepy and it's ONLY 1 AM!!! So I'm going to change into sleep prep mode and we'll talk tomorrow.
Tuesday, August 30, 2011
You know what? Bring it on
I've been hesitant to post much about where I'm finding myself since my random attacker the other day. I've wanted to keep everything limited instead of letting the general public know all because I don't want to deal with nastiness. But that's not how this blog works. If I can write about some of what I have in the past I most certainly can write about the present. If someone chooses to be mean about it then i hope they will be brave enough to leave a name or a particular reason you feel led to be mean to me. An email address would be nice. Mine, should you ever want to use it, is on the sidebar. Attack away if you must, if that somehow makes you feel better about your life.. Although really? The best time to attack someone is typically not when they are manic, weaning off pain meds, somewhat stressed, not sleeping well (see mania),bored, and swollen and bruised where nobody should experience swelling or bruising.
So, the final test results are in. I had multiple cysts of fallopian tubes which are one of those things the doctor said "doesn't USUALLY hurt but could" versus Google which has plenty of reputable sites saying that these cysts can imitate ovarian cysts and can be painful. So my interpretation of that is "these sometimes hurt and based on other findings there is a reasonable chance that was my pain, or at the very least we can hope for that until enough cycles are past that we know what the mirena can and can't do for me. Most other things were pretty typical/as expected. Uterine yuckiness, nothing abnormal. Etc. My doctor continues to feel that my pain is going to be associated with ovulation and that we wait that out to find out if it's true and then if it is we deal with it then. I am going to start preparing for this by talking to Dr. Brain about some "what ifs" to try suppressiving ovulation if needed without making me sick or manic. Better to be ahead than behind on this. My bladder biopsy was normal, however here's where my life gets to be crazy for a while. When I first saw my surgeon (why she has no name is beyond me; I need one for her; since I don't want to address her body parts of choiceand everyone says she's a sweetheart (that exact word) I shall call her Dr. Sweetheart) it was because Dr. Body wanted me to be checked because of blood in my urine. He thought I needed the cystoscopy I just had; however after we went through this incredible process to get in to see her because it was kind of an end of her subspecialty she decided to do a straight cath and test those urine cells for abnormalities. This was in May 2010 and Dr. Sweetheart was really happy to tell me my cells were normal and that the bleeding was nearly certainly uterine and so no more testing needed. When all this was being set up she decided to do the cystoscopy as part of an overall thorough exam for pain. (I read today and have no idea why it took until today that women who have been sexually abused can have a very hard time getting pelvic pain treated because of difficulty isolating it, difficulty discussing it, difficulty standing the testing. I guess I knew this but I needed to see it was a fact, not just something I fail at. I now understand too that when it feels like I'm not being believed it has a great deal to do with not disbelief but the need to remember that I am at a disadvantage when it comes to handling this. It also means that good doctors believe that someone like me needs very thorough testing because isolating, describing and given an accurate portrayal of pain in this region is incredibly hard after you learn to ignore pain and really all sensation in part of your body. Seriously, this is TMI but this is how unaware of pain in the pelvic region I can be: Dr. Sweetheart told me that I should expect to have a good bit of soreness in my "bottom" (this being the term of choice used by gynecologists who are especially good with abuse survivors. I do not know why but notice it in anyone who has been able to handle my PTSD well. Anyway, I knew that the wheelchair out of the hospital hurt my "bottom" and that sitting up in chairs could feel sore. It wasn't until yesterday when I was trying to determine where some discharge was coming from (there are several angry choices) that I discovered that my, um, birth canal, is still swollen shut. A week post op. Yet except for the wheelchair ride and one other random moment of sitting funny in Dr. Body's office yesterday I have not been aware of any pain there. Today I must have a little less swelling as sitting funny makes me aware of where these wire things that come out of my IUD are pressuring into the sore area (they get cut later I believe. I really need to read about this thing in my body). I never felt this soreness enough to think of it, yet my normal pelvic involves the small pediatric speculum they can find and the exam is somewhat limited by what I can tolerate in terms of palpation. I've had the full thing done and can't tolerate it; Dr. Sweetheart does what she has to and I suspect will use ultrasound to monitor beyond that if needed.
OK, I just lost even myself. The point was that every test in the world will be done to get things controlled and to rule out every possible source of pain that I may not be able to describe well. So the cystoscopy was done and once again my bladder was drained the the cells sent for evaluation. This time it appears we may have found a new problem, as the cells were "atypical''. That's not necessarily bad, it just means that further testing is needed, especially because I have a kidney with a "thing" on it. This was found somewhat accidentally about 3 years ago and has been assessed a few times. Nobody has known what it was other than it is apparently fairly large, has been called cystic as well as other things, and it is vascularized. I think the deal was that I'd just have ultrasounds annually to watch it and then I had whooping cough when the last was due and then this, and the end result was it hasn't been seen for nearly 2 years. At last discussion the guess was that it was a type of vascular birthmark tissue since that is more common in someone with extremity vascular birthmark. So now that thing needs to be figured out as well as determining what is making the cells atypical. It is possible that it was some random infection or something and a repeat test will show normal cells and imagining will show a stable kidney "thing". Atypical can mean anything from some cells look funny because of infection or inflammation to cells that are cancerous but aren't showing definitive signs of cancer. I'm going to guess that things will be fine with the next test (although I'm not positive how long it will take before they can say everything is healed enough to ensure accurate results). I know the cells in the bladder and urethra (affected by the procedures and catheter) heal fast but how long they go before they forgive what was done to them I do not know. I do know there was an impressive speed with bleeding after the biopsy of my bladder. In recovery they drained my catheter and it was bright red blood. A few hours later I said something to Dr. Brain about it being gross (I couldn't see it yet) and she said it was actually good and sure enough the urine never was icky again. I suspect that the bloody part was from immediately after the biopsy and that the bleeding area was cauterized but again I have no idea how long it takes before abnormal cells aren't expected.
Time for a new paragraph. Sorry, don't know what's with my writing today. Except lack of sleep, lingering valium and the one!! pain pill I've had today. Anyway, at this point I'm moving on to another doctor who Michal has hilariously named Dr. Pee. Dr. Pee is a urologist and I will see her next week. Per Dr. Sweetheart I will have another test done before I see Dr.Pee, some kind of specialized CT scan that will focus on observing how dye passes through my urinary tract. I'm completely happy since the dye is IV. I drank contrast once when the cystic/vascular/lump/"thing" was first being assessed and it was awful. I gag so easily that I asked to please drink it somewhere I could vomit privately if that happened. I expected to go to a cubicle. I did not know that this was the 2nd to last day this hospital was being used (moved to a new building) and so they actually sent me and 2 cups of "orange cream" barium into a public bathroom. I do not want to know what I ingested with that stuff, since I had to set the cups down a few times while I gagged and vomited. Ugh. However, despite that test being supposed to be before Dr. Pee per my discussion with Dr. Sweetheart yesterday and her discussion with Dr. Pee prior to that. So I have a call in about that and there is some hang-up with orders so hopefully they'll work that all out without my having to miss work to get it done.
And that's my other big news. I see Dr. Brain next week. If we have gotten my sleep back to normal and the mania controlled so I go back functioning at my best then I will be returning to work on the 13th. I honestly won't be totally shocked if that takes an extra week or so but if it does so be it. I don't want to go back not fully ready. That is a risk with going back when I am and we'll also have to factor in recovery fatigue with bipolar fatigue. Dr Sweetheart has basically said I can take 4-6 weeks which is a typical leave or go back when I feel ready. I think if I am psychiatrically ready I'll be ready in general. I'll have some days off for follow-ups from surgery and possibly for Dr. Pee as well, but work has been notified of that as well, that I'm not done with the entire process for a little longer.
So wait and see is back.
So, the final test results are in. I had multiple cysts of fallopian tubes which are one of those things the doctor said "doesn't USUALLY hurt but could" versus Google which has plenty of reputable sites saying that these cysts can imitate ovarian cysts and can be painful. So my interpretation of that is "these sometimes hurt and based on other findings there is a reasonable chance that was my pain, or at the very least we can hope for that until enough cycles are past that we know what the mirena can and can't do for me. Most other things were pretty typical/as expected. Uterine yuckiness, nothing abnormal. Etc. My doctor continues to feel that my pain is going to be associated with ovulation and that we wait that out to find out if it's true and then if it is we deal with it then. I am going to start preparing for this by talking to Dr. Brain about some "what ifs" to try suppressiving ovulation if needed without making me sick or manic. Better to be ahead than behind on this. My bladder biopsy was normal, however here's where my life gets to be crazy for a while. When I first saw my surgeon (why she has no name is beyond me; I need one for her; since I don't want to address her body parts of choiceand everyone says she's a sweetheart (that exact word) I shall call her Dr. Sweetheart) it was because Dr. Body wanted me to be checked because of blood in my urine. He thought I needed the cystoscopy I just had; however after we went through this incredible process to get in to see her because it was kind of an end of her subspecialty she decided to do a straight cath and test those urine cells for abnormalities. This was in May 2010 and Dr. Sweetheart was really happy to tell me my cells were normal and that the bleeding was nearly certainly uterine and so no more testing needed. When all this was being set up she decided to do the cystoscopy as part of an overall thorough exam for pain. (I read today and have no idea why it took until today that women who have been sexually abused can have a very hard time getting pelvic pain treated because of difficulty isolating it, difficulty discussing it, difficulty standing the testing. I guess I knew this but I needed to see it was a fact, not just something I fail at. I now understand too that when it feels like I'm not being believed it has a great deal to do with not disbelief but the need to remember that I am at a disadvantage when it comes to handling this. It also means that good doctors believe that someone like me needs very thorough testing because isolating, describing and given an accurate portrayal of pain in this region is incredibly hard after you learn to ignore pain and really all sensation in part of your body. Seriously, this is TMI but this is how unaware of pain in the pelvic region I can be: Dr. Sweetheart told me that I should expect to have a good bit of soreness in my "bottom" (this being the term of choice used by gynecologists who are especially good with abuse survivors. I do not know why but notice it in anyone who has been able to handle my PTSD well. Anyway, I knew that the wheelchair out of the hospital hurt my "bottom" and that sitting up in chairs could feel sore. It wasn't until yesterday when I was trying to determine where some discharge was coming from (there are several angry choices) that I discovered that my, um, birth canal, is still swollen shut. A week post op. Yet except for the wheelchair ride and one other random moment of sitting funny in Dr. Body's office yesterday I have not been aware of any pain there. Today I must have a little less swelling as sitting funny makes me aware of where these wire things that come out of my IUD are pressuring into the sore area (they get cut later I believe. I really need to read about this thing in my body). I never felt this soreness enough to think of it, yet my normal pelvic involves the small pediatric speculum they can find and the exam is somewhat limited by what I can tolerate in terms of palpation. I've had the full thing done and can't tolerate it; Dr. Sweetheart does what she has to and I suspect will use ultrasound to monitor beyond that if needed.
OK, I just lost even myself. The point was that every test in the world will be done to get things controlled and to rule out every possible source of pain that I may not be able to describe well. So the cystoscopy was done and once again my bladder was drained the the cells sent for evaluation. This time it appears we may have found a new problem, as the cells were "atypical''. That's not necessarily bad, it just means that further testing is needed, especially because I have a kidney with a "thing" on it. This was found somewhat accidentally about 3 years ago and has been assessed a few times. Nobody has known what it was other than it is apparently fairly large, has been called cystic as well as other things, and it is vascularized. I think the deal was that I'd just have ultrasounds annually to watch it and then I had whooping cough when the last was due and then this, and the end result was it hasn't been seen for nearly 2 years. At last discussion the guess was that it was a type of vascular birthmark tissue since that is more common in someone with extremity vascular birthmark. So now that thing needs to be figured out as well as determining what is making the cells atypical. It is possible that it was some random infection or something and a repeat test will show normal cells and imagining will show a stable kidney "thing". Atypical can mean anything from some cells look funny because of infection or inflammation to cells that are cancerous but aren't showing definitive signs of cancer. I'm going to guess that things will be fine with the next test (although I'm not positive how long it will take before they can say everything is healed enough to ensure accurate results). I know the cells in the bladder and urethra (affected by the procedures and catheter) heal fast but how long they go before they forgive what was done to them I do not know. I do know there was an impressive speed with bleeding after the biopsy of my bladder. In recovery they drained my catheter and it was bright red blood. A few hours later I said something to Dr. Brain about it being gross (I couldn't see it yet) and she said it was actually good and sure enough the urine never was icky again. I suspect that the bloody part was from immediately after the biopsy and that the bleeding area was cauterized but again I have no idea how long it takes before abnormal cells aren't expected.
Time for a new paragraph. Sorry, don't know what's with my writing today. Except lack of sleep, lingering valium and the one!! pain pill I've had today. Anyway, at this point I'm moving on to another doctor who Michal has hilariously named Dr. Pee. Dr. Pee is a urologist and I will see her next week. Per Dr. Sweetheart I will have another test done before I see Dr.Pee, some kind of specialized CT scan that will focus on observing how dye passes through my urinary tract. I'm completely happy since the dye is IV. I drank contrast once when the cystic/vascular/lump/"thing" was first being assessed and it was awful. I gag so easily that I asked to please drink it somewhere I could vomit privately if that happened. I expected to go to a cubicle. I did not know that this was the 2nd to last day this hospital was being used (moved to a new building) and so they actually sent me and 2 cups of "orange cream" barium into a public bathroom. I do not want to know what I ingested with that stuff, since I had to set the cups down a few times while I gagged and vomited. Ugh. However, despite that test being supposed to be before Dr. Pee per my discussion with Dr. Sweetheart yesterday and her discussion with Dr. Pee prior to that. So I have a call in about that and there is some hang-up with orders so hopefully they'll work that all out without my having to miss work to get it done.
And that's my other big news. I see Dr. Brain next week. If we have gotten my sleep back to normal and the mania controlled so I go back functioning at my best then I will be returning to work on the 13th. I honestly won't be totally shocked if that takes an extra week or so but if it does so be it. I don't want to go back not fully ready. That is a risk with going back when I am and we'll also have to factor in recovery fatigue with bipolar fatigue. Dr Sweetheart has basically said I can take 4-6 weeks which is a typical leave or go back when I feel ready. I think if I am psychiatrically ready I'll be ready in general. I'll have some days off for follow-ups from surgery and possibly for Dr. Pee as well, but work has been notified of that as well, that I'm not done with the entire process for a little longer.
So wait and see is back.
Sunday, August 28, 2011
Free speech
In the 5 1/2 years I have written this blog I've had 3 comments that were inappropriate. The 3rd was today. For now I am leaving it up as I may want to discuss it further at a later date. If you wish to see it is on the good, bad, and ugly post. "anonymous", because it's easy to call names if you don't leave your own (and anonymous is always fine here although I'd rather not have it be used to hurt me). There's no real need to dignify it with a response, and the only reason I'm writing this here is to say thank you. Thank you, anonymous, for pulling to the surface fears I have written about over and over here. Thank you for not reading closely or interpreting what I said however you wanted to. Thank you for making recovery even more fun when I just reached the point where my pain meds are making me manic. I needed more to stress about when I am on limited activity and feel jittery.
The funny thing is that I suspect I know who you are. It's funny what devices can be imbedded in these blogs.....
The funny thing is that I suspect I know who you are. It's funny what devices can be imbedded in these blogs.....
Awake
Today I've had an actual awake period. I also have had a little less pain medication. I've not been out of bed, but one step at a time. I'm also ready for bed now (7:30) but am not due for pain meds for a while so am trying to either stay awake or nap. I'm a little concerned about some signs of an infection; not sure what is happening. Hard to identify abnormal in the midst of normal goop. I do see Dr Body tomorrow so I can talk to him about it if necessary and if he thinks it's necessary I'll contact my surgeon. Hopefully it's just part of the normal goop.
I was supposed to have Dr. Body, Dr. Lungs and Dr. Mind tomorrow. I cancelled everyone but Dr. Body. I am simply not ready to be up that much yet.
Not much else to say. The last post took about 3 days to write and now I have nothing because all I have done is sleep, read, eat and watch part of a movie.
i do need to shift sheets over to the dryer; can't be without them the next time I spill something.
Very exciting day.
I was supposed to have Dr. Body, Dr. Lungs and Dr. Mind tomorrow. I cancelled everyone but Dr. Body. I am simply not ready to be up that much yet.
Not much else to say. The last post took about 3 days to write and now I have nothing because all I have done is sleep, read, eat and watch part of a movie.
i do need to shift sheets over to the dryer; can't be without them the next time I spill something.
Very exciting day.
Saturday, August 27, 2011
overdid
So apparently this surgery lets you know when you have done too much. I knew this but the ways it kicks back if I do more than a tiny bit really is impressive. If I don't behave I wind up hurting, bleeding, with gas pain, and in a lot of pain. Overdoing is not too hard to do either; it's amazing how much we do during the course of a day that we don't think about. Twice in 3 days I've had to rapidly change sheets and clean carpet because my cat or I spilled my drink. I got worried about something I couldn't find that had slid under the bed and that caused issues. I try to go too long without pain meds and my body attacks.
I know this is normal and that it is also partly because I am so very tired from not sleeping well for weeks before surgery as well as getting almost no sleep in the hospital, but it is not good for my impatience level.
I know this is normal and that it is also partly because I am so very tired from not sleeping well for weeks before surgery as well as getting almost no sleep in the hospital, but it is not good for my impatience level.
The Good, the bad and the ugly: Hospitalization
This post is going to be more detailed than you probably really care about, but it must be written out somewhere so I remember when I see my surgeons for follow-up.
The good:
After surgery my time in recovery was short. They brought my mother back to tell me what the doctor had said and let me eat ice chips and got my pain controlled. I asked before I left if I'd be able to get more morphine immediately upon going upstairs. They said I would. Lesson learned: Always ask for more pain meds before transfer. The other really great thing was Dr. Brain came to see me after she finished work, and hung out and visited for quite a while. I love Dr. Brain. She'd spent the whole day checking my chart to see how I was throughout the day. And she came in with the good news that I can be less strict with my diet based on a conversation with the primary tester/developer (?) of the drug. Which is exciting. She also promised to email Dr. Mind so he would know I was ok. She was just so nice to take time to do that after all the time she'd already had to put into this surgery.
The Bad:
I waited an hour and a half upstairs for meds, long enough my mother went in search of a nurse to tell her I was in serious pain and needed meds. They still delayed, something about orders, but the recovery nurse had told me it was all in order. This nurse was over-busy and not helpful with anything, ever, either day, except that when Dr. Brain came to visit and I had an attending physician chatting with me like a friend she suddenly was very busy and "helpful". She got my catheter to be less painful for a few minutes and then that was it, her entire contribution to my stay, except for trying to impress Dr. Brain. However, a later nurse decided my catheter pain was because that nurse had done something wrong and her attempt at fixing it caused everything to flow back into my bladder. So then a 3rd nurse spent 30 minutes getting it functional again, then a few hours later I was back to bladder spasms and the feeling I desperately needed to pee but couldn't. Removal of the stupid thing a few hours later was followed by lots of peeing on my part. I had a full bladder when it came out, just like I'd been saying for hours. There were 2 other bad things and those were just typical hospital stuff too (I've spent years giving cavalier responses to catheter pain as I was taught. Never, ever again). The first was that it was impossible to sleep. Partly this was because of care being done; I was on vitals every 2 hours, the IV had to be monitored, changed, and the settings altered, my catheter bag needed to be emptied, etc. The resident finally got around to coming to see me at 1 AM and woke up from one of my only periods of sleep for this. I was beside the nurses' station and they were loud; I was also beside the ice machine and it was loud. Someone down the hall had a toddler visiting after 10 pm and the toddler was having temper tantrums, as well he/she should. I can't even remember what all was going on except that I got no sleep (and the key reason for that is in the ugly.) So the next morning when she said I could go home I was absolutely thrilled except that I was a little anxious because the patient handouts say that you will be discharged by 11 AM on discharge day and that if you don't have a ride you'll wait in a sort of holding area. Given sitting isn't high on my list right now my mother really scarmbled to be there by 11. I was there until almost 7 so she spent a whole day bored since I didn't have much she was interested in doing with me and had to buy 2 meals of icky fast food etc. The worst part/almost ugly was waking at 4 needing pain meds and not having anything I could take until 6. After laparoscopy you normally go through periods of having serious gas pains because they inflate your belly with gas that they can't totally get out in surgery. The pain can move around and hurt in the shoulders and back. I've found this pretty manageable; it was my catheter that made my pain during the period of waiting and waiting for meds and then waiting and waiting for them to do something go up to 9-10/10. It was the worst pain I have ever felt in my life. I'm not sure why I wasn't given orders to have morphine on the floor if I needed it but I wasn't (this is something I'm anxious to talk to my doctor about) and because they weren't coming in and assessing pain as often as they should have nor pursuing more meds when I was not able to have anything, I had a very hard few hours. However to be fair just like all pain I am not good at communicating severity. I did not aggressively pursue relief or even ask if they could get something to help. I did talk to them about bladder pain relief and then nobody wanted to really try it because of my other meds so they pulled the catheter instead and that did work. However, nobody should have to go through 4 hours of that much pain.
All in all though, the bad was not that bad. Much of it can be countered; my room was loud because of the nurses' station and at times other people's visitors but it was a private room as all the rooms on my unit were. Some of the pain, etc. was worse because I did not seek help because I hated having to use the call light for everything. I kept hearing memories of nursing home complaints of "she's always on the call light" combined with complaints of the nurses about how demanding room 13 was being (it was a post-op floor, demanding seems relatively fair although I know from experience how bad some people can be) and so it was hard for me to push the call light for every need during the 20 hours or so I was on bedrest. I kept trying to get them to make parts of it easier, like giving me a lot of fluids since I knew I would drink a ton. I was not restricted at all and yet they kept giving me one, maybe 2, 16 oz. cups that I'd finish in 30 minutes or so then want more. I kept explaining, even Dr. Brain explained, that I must drink a lot, but they didn't seem to understand MUST and A LOT.
The Ugly:
There were 2 things that were really bad, things that I have complaints filed about because, well, you'll see.
First, my meds. My meds are scheduled as follows: Bedtime: 600 mg Seroquel XR, 1 1/2 tabs of lithium CR (there are 3 versions of lithium, one works better for me than others but the dose is the important part and there's now way to achieve that dose without using the version I take), 2 1 mg klonopin pills, 1 singulair tablet, vitamin D, laxative, and normally a vitamin that was on hold during surgery. I have various meds as needed, including 5 mg of valium. In the morning I take 1 nexium, 2 tabs of a drug called amiloride for diabetes insipidus (makes me pee constantly and without the med all my electrolytes flush out of my system. It's a rare condition and rare treatment b/c usually if you get it from lithium as I have they take you off lithium but for me that wasn't an option); thyroid medication; laxative.
So they came and told me that they didn't have the extended release forms of seroquel and a med that I didn't need to take while inpatient anyway. I told them regular seroquel would be fine. So eventually they brought in my evening meds. 300 mg of Serqouel, singulair, 1 tablet of lithium, type unspecified but didn't look like the type I take and couldn't have been the right dose, valium in an unspecified dose that I think was 1 mg because the whole poing of my 5 mg tablets is they completely knock me out when I can't sleep, which is the reason I agreed to take the valium, I figured the help with sleep would be good, vitamin D and my laxative. I was too tired and medicated to think hard and object strenuously and demand the psych team come in which I should have done. The end result of this was that I wasn't sufficiently sedated to sleep and I got to have symptoms of klonopin withdrawl the next day.
It was also bad in the morning as I was not given Nexium (important because of GERD which makes my asthma worse along with being on meds that upset the tummy anyway) but I was given (and refused) more Seroquel (I don't take that in the morning since it makes me sleepy. Plus, if I normally take 600 mg at bedtime why would you try to give me 325 mg divided and call that the same? They also tried to get me to take singulair again, even though it is a once daily med. I refused that. The nurse made some funny statement about maybe they were changing it to a morning med. Um, no. I don't need my gyn. residents changing my asthma meds. Or my psych meds, but I figure Dr. Brain has adequately taken care of that by now and that resident is probably dead. And, to top it all off, I can't prove it but I think someone finally managed to screw up my diabetes insipidus medicine with a strong blood pressure med that sounds very similar (I've gotten this from the pharmacy twice but caught the error. This time I think I took it). Why do I think this? Because I was on IV fluids for 36 hours or so and drank a ton and was in pain which should have made my blood pressure go up. At one point that day it was 88/44, I was dizzy even when sitting in bed, and it didn't come up to anything reasonable again that I am aware of. I always have low blood pressure, but 88/44 is extremely low and it should have been up; the highest I saw was while I was in super pain that morning and before I took AM meds it was 126/70 or something; that was from pain.
So my meds were frighteningly screwed up. That 1 AM resident said he'd reviewed my psych meds and they seemed fine so he is my suspect. I think he is also the one who fought with nursing about my d/c papers that he didn't complete correctly, resulting in my long stay on Wednesday. However, my mother pointed out they may have been watching my blood pressure and not telling me. I think I am going to request those records; maybe I can see what happened.
I do find it ironic that I went in there so afraid of med errors and the ones that were dangerous were covered but nearly every other med was screwed up.
Ugly #2 has already had a complaint filed by the ombudsman. As I said we waited 7 hours after the alleged deadline and nearly 11 hours post my being told I was going home to be discharged with very vague reasons being given. If they had just said "we're monitoring you blood pressure" "your doctor wants you to be here 24 hours post-op", etc. then that would have been fine, but what I was told was something about a resident doing something wrong. They were so anxious to shove me out the door that transport was called and waiting before my IVs were out or I had a shirt on. My IVs were kind of a mess; it appears one failed in surgery and was rapidly replaced with a 2nd attempt blowing the vein and the third attempt being very quickly placed. This resulted in a ton of tape and pieces that were hanging down catching on things. Removing it was a mess and I actually helped. This was partially because the person removing it was a nurse's aide and I don't think they're allowed to do this. She was nice but not trained with needles. So finally we got me so I wasn't bleeding from the Ivs and had clothes on. The transport guy took me down to the proper place, and asked what my mother was driving. I told him, at least twice. When he noticed that someone beside us was having trouble being put in her vehicle because of 2 broken legs he wandered over to help her transporter. This is fine, but he forgot me. They talked for a good 15 minutes about how to help her and most of that time my mother was sitting right there with him facing her. I kept waiting, good girl that I am, (And also because I knew that the wheelchair was not safe for me to get out of and that with my weak, sore abdominals I wasn't easily going to fix that). But when they loaded the other person and he walked away I lost it. I got up and climbed out of the wheelchair (which hurt like crazy given where my surgery was) and went to my mother's care, sobbing hysterically. He did notice this and asked "so you found your mother"which made me more angry and I cried even harder. A nearby volunteer wanted to know if I was ok and I'm sure heard most of the story as I cried to my mother, who hadn't been able to see me.
So I left, and that night I reported the medication ugly to Dr. Brain and the next day I filed a complaint with the ombudsman regarding the transporter who abandoned me and then forgot about me.
It wasn't all bad. The most important parts went really well. It could have been better in spots. A lot of that was my being too out of it to fight about my pm meds. I should have. I just was so out of it. Overall though I've survived surgery and survived some tough things afterward and now I just have to keep healing.
The good:
After surgery my time in recovery was short. They brought my mother back to tell me what the doctor had said and let me eat ice chips and got my pain controlled. I asked before I left if I'd be able to get more morphine immediately upon going upstairs. They said I would. Lesson learned: Always ask for more pain meds before transfer. The other really great thing was Dr. Brain came to see me after she finished work, and hung out and visited for quite a while. I love Dr. Brain. She'd spent the whole day checking my chart to see how I was throughout the day. And she came in with the good news that I can be less strict with my diet based on a conversation with the primary tester/developer (?) of the drug. Which is exciting. She also promised to email Dr. Mind so he would know I was ok. She was just so nice to take time to do that after all the time she'd already had to put into this surgery.
The Bad:
I waited an hour and a half upstairs for meds, long enough my mother went in search of a nurse to tell her I was in serious pain and needed meds. They still delayed, something about orders, but the recovery nurse had told me it was all in order. This nurse was over-busy and not helpful with anything, ever, either day, except that when Dr. Brain came to visit and I had an attending physician chatting with me like a friend she suddenly was very busy and "helpful". She got my catheter to be less painful for a few minutes and then that was it, her entire contribution to my stay, except for trying to impress Dr. Brain. However, a later nurse decided my catheter pain was because that nurse had done something wrong and her attempt at fixing it caused everything to flow back into my bladder. So then a 3rd nurse spent 30 minutes getting it functional again, then a few hours later I was back to bladder spasms and the feeling I desperately needed to pee but couldn't. Removal of the stupid thing a few hours later was followed by lots of peeing on my part. I had a full bladder when it came out, just like I'd been saying for hours. There were 2 other bad things and those were just typical hospital stuff too (I've spent years giving cavalier responses to catheter pain as I was taught. Never, ever again). The first was that it was impossible to sleep. Partly this was because of care being done; I was on vitals every 2 hours, the IV had to be monitored, changed, and the settings altered, my catheter bag needed to be emptied, etc. The resident finally got around to coming to see me at 1 AM and woke up from one of my only periods of sleep for this. I was beside the nurses' station and they were loud; I was also beside the ice machine and it was loud. Someone down the hall had a toddler visiting after 10 pm and the toddler was having temper tantrums, as well he/she should. I can't even remember what all was going on except that I got no sleep (and the key reason for that is in the ugly.) So the next morning when she said I could go home I was absolutely thrilled except that I was a little anxious because the patient handouts say that you will be discharged by 11 AM on discharge day and that if you don't have a ride you'll wait in a sort of holding area. Given sitting isn't high on my list right now my mother really scarmbled to be there by 11. I was there until almost 7 so she spent a whole day bored since I didn't have much she was interested in doing with me and had to buy 2 meals of icky fast food etc. The worst part/almost ugly was waking at 4 needing pain meds and not having anything I could take until 6. After laparoscopy you normally go through periods of having serious gas pains because they inflate your belly with gas that they can't totally get out in surgery. The pain can move around and hurt in the shoulders and back. I've found this pretty manageable; it was my catheter that made my pain during the period of waiting and waiting for meds and then waiting and waiting for them to do something go up to 9-10/10. It was the worst pain I have ever felt in my life. I'm not sure why I wasn't given orders to have morphine on the floor if I needed it but I wasn't (this is something I'm anxious to talk to my doctor about) and because they weren't coming in and assessing pain as often as they should have nor pursuing more meds when I was not able to have anything, I had a very hard few hours. However to be fair just like all pain I am not good at communicating severity. I did not aggressively pursue relief or even ask if they could get something to help. I did talk to them about bladder pain relief and then nobody wanted to really try it because of my other meds so they pulled the catheter instead and that did work. However, nobody should have to go through 4 hours of that much pain.
All in all though, the bad was not that bad. Much of it can be countered; my room was loud because of the nurses' station and at times other people's visitors but it was a private room as all the rooms on my unit were. Some of the pain, etc. was worse because I did not seek help because I hated having to use the call light for everything. I kept hearing memories of nursing home complaints of "she's always on the call light" combined with complaints of the nurses about how demanding room 13 was being (it was a post-op floor, demanding seems relatively fair although I know from experience how bad some people can be) and so it was hard for me to push the call light for every need during the 20 hours or so I was on bedrest. I kept trying to get them to make parts of it easier, like giving me a lot of fluids since I knew I would drink a ton. I was not restricted at all and yet they kept giving me one, maybe 2, 16 oz. cups that I'd finish in 30 minutes or so then want more. I kept explaining, even Dr. Brain explained, that I must drink a lot, but they didn't seem to understand MUST and A LOT.
The Ugly:
There were 2 things that were really bad, things that I have complaints filed about because, well, you'll see.
First, my meds. My meds are scheduled as follows: Bedtime: 600 mg Seroquel XR, 1 1/2 tabs of lithium CR (there are 3 versions of lithium, one works better for me than others but the dose is the important part and there's now way to achieve that dose without using the version I take), 2 1 mg klonopin pills, 1 singulair tablet, vitamin D, laxative, and normally a vitamin that was on hold during surgery. I have various meds as needed, including 5 mg of valium. In the morning I take 1 nexium, 2 tabs of a drug called amiloride for diabetes insipidus (makes me pee constantly and without the med all my electrolytes flush out of my system. It's a rare condition and rare treatment b/c usually if you get it from lithium as I have they take you off lithium but for me that wasn't an option); thyroid medication; laxative.
So they came and told me that they didn't have the extended release forms of seroquel and a med that I didn't need to take while inpatient anyway. I told them regular seroquel would be fine. So eventually they brought in my evening meds. 300 mg of Serqouel, singulair, 1 tablet of lithium, type unspecified but didn't look like the type I take and couldn't have been the right dose, valium in an unspecified dose that I think was 1 mg because the whole poing of my 5 mg tablets is they completely knock me out when I can't sleep, which is the reason I agreed to take the valium, I figured the help with sleep would be good, vitamin D and my laxative. I was too tired and medicated to think hard and object strenuously and demand the psych team come in which I should have done. The end result of this was that I wasn't sufficiently sedated to sleep and I got to have symptoms of klonopin withdrawl the next day.
It was also bad in the morning as I was not given Nexium (important because of GERD which makes my asthma worse along with being on meds that upset the tummy anyway) but I was given (and refused) more Seroquel (I don't take that in the morning since it makes me sleepy. Plus, if I normally take 600 mg at bedtime why would you try to give me 325 mg divided and call that the same? They also tried to get me to take singulair again, even though it is a once daily med. I refused that. The nurse made some funny statement about maybe they were changing it to a morning med. Um, no. I don't need my gyn. residents changing my asthma meds. Or my psych meds, but I figure Dr. Brain has adequately taken care of that by now and that resident is probably dead. And, to top it all off, I can't prove it but I think someone finally managed to screw up my diabetes insipidus medicine with a strong blood pressure med that sounds very similar (I've gotten this from the pharmacy twice but caught the error. This time I think I took it). Why do I think this? Because I was on IV fluids for 36 hours or so and drank a ton and was in pain which should have made my blood pressure go up. At one point that day it was 88/44, I was dizzy even when sitting in bed, and it didn't come up to anything reasonable again that I am aware of. I always have low blood pressure, but 88/44 is extremely low and it should have been up; the highest I saw was while I was in super pain that morning and before I took AM meds it was 126/70 or something; that was from pain.
So my meds were frighteningly screwed up. That 1 AM resident said he'd reviewed my psych meds and they seemed fine so he is my suspect. I think he is also the one who fought with nursing about my d/c papers that he didn't complete correctly, resulting in my long stay on Wednesday. However, my mother pointed out they may have been watching my blood pressure and not telling me. I think I am going to request those records; maybe I can see what happened.
I do find it ironic that I went in there so afraid of med errors and the ones that were dangerous were covered but nearly every other med was screwed up.
Ugly #2 has already had a complaint filed by the ombudsman. As I said we waited 7 hours after the alleged deadline and nearly 11 hours post my being told I was going home to be discharged with very vague reasons being given. If they had just said "we're monitoring you blood pressure" "your doctor wants you to be here 24 hours post-op", etc. then that would have been fine, but what I was told was something about a resident doing something wrong. They were so anxious to shove me out the door that transport was called and waiting before my IVs were out or I had a shirt on. My IVs were kind of a mess; it appears one failed in surgery and was rapidly replaced with a 2nd attempt blowing the vein and the third attempt being very quickly placed. This resulted in a ton of tape and pieces that were hanging down catching on things. Removing it was a mess and I actually helped. This was partially because the person removing it was a nurse's aide and I don't think they're allowed to do this. She was nice but not trained with needles. So finally we got me so I wasn't bleeding from the Ivs and had clothes on. The transport guy took me down to the proper place, and asked what my mother was driving. I told him, at least twice. When he noticed that someone beside us was having trouble being put in her vehicle because of 2 broken legs he wandered over to help her transporter. This is fine, but he forgot me. They talked for a good 15 minutes about how to help her and most of that time my mother was sitting right there with him facing her. I kept waiting, good girl that I am, (And also because I knew that the wheelchair was not safe for me to get out of and that with my weak, sore abdominals I wasn't easily going to fix that). But when they loaded the other person and he walked away I lost it. I got up and climbed out of the wheelchair (which hurt like crazy given where my surgery was) and went to my mother's care, sobbing hysterically. He did notice this and asked "so you found your mother"which made me more angry and I cried even harder. A nearby volunteer wanted to know if I was ok and I'm sure heard most of the story as I cried to my mother, who hadn't been able to see me.
So I left, and that night I reported the medication ugly to Dr. Brain and the next day I filed a complaint with the ombudsman regarding the transporter who abandoned me and then forgot about me.
It wasn't all bad. The most important parts went really well. It could have been better in spots. A lot of that was my being too out of it to fight about my pm meds. I should have. I just was so out of it. Overall though I've survived surgery and survived some tough things afterward and now I just have to keep healing.
Thursday, August 25, 2011
Quick update
I don't know how long I can sit up to type right now; I just walked around and maybe overdid it a little with use of stomach muscles. But the basic summary is that I did very well with anxiety pre-op (and post), with no need for the psych consult team or the orders for IV valium. I even had to wait for 2 hours because of my surgeon being behind schedule then the room needing to be cleaned back in a holding area with nothing to do but make potty trips (I had a liter plus of fluid while back there; I remember those trips fondly as it was the last time peeing was easy although that's improving). There was a TV but I couldn't see it without glasses. Finally they took me back, ran through procedures, got me on the table, my doctor held my hand and they gave me medicine to knock me out. They told me that I should be feeling sleepy and would get more medicine and just as I got scared and started saying behind the mask NOT SLEEPY I was out. It was the easiest I've ever come out of anesthesia; the other times I've come up rather violently, usually with someone trying to wake me. Here they just let me come out of it and my nurse just was standing nearby. I immediately wanted pain meds because my incisions hurt; they've never really hurt since. I then wanted to pee which was when I found out about the catheter. I could have sworn I was told that would not be long-term but it was. I was kept on full bed-rest with the catheter until the next morning. It probably would have been in longer but I had horrible bladder spasms (the worst pain by far) from it and so my dr. let it come out the next morning. There was a whole thing where it was draining back into my bladder for some time during the night and that hurts as much as my patient's have always said it does.
I'll tell you about the more interesting aspects of my stay later. For now let's just say I had: a serious need for a d&C (and I now know that I had symptoms of that a year ago so if I need another I'll know about it), a small amount of endometriosis (which is good, better than it appeared it might be), cysts of both fallopian tubes (may or may not have caused pain and very typical but worth removing), something in my bladder that was biopsied but I don't know more than it was different appearing tissue; Dr. Body said there is another disorder that it may be a sign of but we'll not know until the biopsy is back, and the polyp which is gone now too. So no huge findings, which is very good but also not an entirely clear abdomen. There's no way to know if the pain will end now however although I have pain now it's not the pain I'd been having. Sometimes that hurts some but tissue was removed in that area and because they fill your belly with gas the pain tends to shift around anyway. The gas pain is supposed to be the worst part, and it does hurt but the worst by far for me was the catheeter. I told my dr.that if it could come out and I could pee I'd be fine. They took it out and said I wouldn't be able to pee. They didn't even set up the measuring thing for how much I would pee but it was easily as much as every other time after that so 10-14 oz. That's what got stuck in my bladder. I hope to never have a catheter again.
And now I'm going to get back in the no typing but more comfortable position, after some meds, and work on sleeping more. Sleep is a very good thing.
I'll tell you about the more interesting aspects of my stay later. For now let's just say I had: a serious need for a d&C (and I now know that I had symptoms of that a year ago so if I need another I'll know about it), a small amount of endometriosis (which is good, better than it appeared it might be), cysts of both fallopian tubes (may or may not have caused pain and very typical but worth removing), something in my bladder that was biopsied but I don't know more than it was different appearing tissue; Dr. Body said there is another disorder that it may be a sign of but we'll not know until the biopsy is back, and the polyp which is gone now too. So no huge findings, which is very good but also not an entirely clear abdomen. There's no way to know if the pain will end now however although I have pain now it's not the pain I'd been having. Sometimes that hurts some but tissue was removed in that area and because they fill your belly with gas the pain tends to shift around anyway. The gas pain is supposed to be the worst part, and it does hurt but the worst by far for me was the catheeter. I told my dr.that if it could come out and I could pee I'd be fine. They took it out and said I wouldn't be able to pee. They didn't even set up the measuring thing for how much I would pee but it was easily as much as every other time after that so 10-14 oz. That's what got stuck in my bladder. I hope to never have a catheter again.
And now I'm going to get back in the no typing but more comfortable position, after some meds, and work on sleeping more. Sleep is a very good thing.
Home
I'm home; all went well. I'm feeling pretty good, really tired from for nearly 48 hours and from pain meds, but the pain is manageable although I let it go more than 6 hours and am paying now for sleeping.
I'm having trouble staying coherent while writing so will write more when I'm able to focus.
I'm having trouble staying coherent while writing so will write more when I'm able to focus.
Monday, August 22, 2011
The last post before surgery
I am to be at the hospital at 7:30 AM tomorrow, having taken 2 showers with antibacterial soap with particular emphasis on a clean belly button (one of the incisions goes there). Shower one is planned for about 20 minutes from now. I am fighting to stay awake (of course, after not sleeping for 2 weeks I finally want to sleep when I need to stay up to eat one last time before surgery.) Shower two is in the morning. I don't know what time surgery actually is; I assume around 9 or 10 probably.
I'm amazingly calm; I've waited so long to get this fixed. I just pray there is something to fix.
Everything is in order otherwise; I have a bag of things for my mom to bring to me once I'm admitted to a room. My house is clean and has nice, clean upstairs carpeting. The flooded basement carpet reeks. I emptied 3 gallons of water from the dehumidifiers in 6 hours today. Even then there is a lot of drying to go. I even rearranged my bedroom slightly. Everything has been in the same place in there since Dr. Mind made me rearrange things 5 years ago when he was trying to physically wear me out with forced long walks and this furniture moving thing. It took a while for me to get a sense of humor about this; he told me some thing about changing where I slept would change my nightmares but later admitted to the attempt at exhausting me. It did work and I slept better from the time all that moving was done (which coincided with weighted blanket #1 being started, which is probably the real reason but we'll ignore that part.)
Mostly I just want to be at this point tomorrow. I have everything I can control under control, and what I can't control I can't control. Lack of control is far and away the hardest part of this; I mean really, tomorrow someone is going to knock me out, cram various cameras into various orifices, create NEW orifices and cram things in those, then stick me in a bed and hopefully explain what has been so wrong.
It's too much to really think about.
But tomorrow morning, please say a prayer for the surgeons and anesthesiologists and the psych team who have to work together to manage a very complicated situation.
I'll post when I get home. That's probably Wednesday, possibly Thursday, depending how I do, if they can manage my pain easily, etc.
Miss you all.
I'm amazingly calm; I've waited so long to get this fixed. I just pray there is something to fix.
Everything is in order otherwise; I have a bag of things for my mom to bring to me once I'm admitted to a room. My house is clean and has nice, clean upstairs carpeting. The flooded basement carpet reeks. I emptied 3 gallons of water from the dehumidifiers in 6 hours today. Even then there is a lot of drying to go. I even rearranged my bedroom slightly. Everything has been in the same place in there since Dr. Mind made me rearrange things 5 years ago when he was trying to physically wear me out with forced long walks and this furniture moving thing. It took a while for me to get a sense of humor about this; he told me some thing about changing where I slept would change my nightmares but later admitted to the attempt at exhausting me. It did work and I slept better from the time all that moving was done (which coincided with weighted blanket #1 being started, which is probably the real reason but we'll ignore that part.)
Mostly I just want to be at this point tomorrow. I have everything I can control under control, and what I can't control I can't control. Lack of control is far and away the hardest part of this; I mean really, tomorrow someone is going to knock me out, cram various cameras into various orifices, create NEW orifices and cram things in those, then stick me in a bed and hopefully explain what has been so wrong.
It's too much to really think about.
But tomorrow morning, please say a prayer for the surgeons and anesthesiologists and the psych team who have to work together to manage a very complicated situation.
I'll post when I get home. That's probably Wednesday, possibly Thursday, depending how I do, if they can manage my pain easily, etc.
Miss you all.
Another experience
I have this medication I had to take tonight and then again tomorrow night to soften my cervix and help it to open some so they have an easier time getting in with the scope. I greatly appreciate that as I suspect that having post-op pain from having my cervix pried apart may not add to the experience. This medicine is also what is given to start inducing labor, although I think in that case it is typically inserted rather than swallowed. They said it can have wildly varying effects from feeling nothing to cramping to a good bit of pain and/or diarrhea. I am not to do the repeat dose if this one is bad. Thus far it just feels like a lot of cramps. No big deal. It does seem to make the place that hurts all the time hurt a little more if I move around so I'm not running around a lot tonight, but that's fine by me since the narcotics now cost me a (nice) toaster. Since I am likely to want a lot of toast this week that will have to be replaced ASAP too. (I moved the toaster on the stove to use a burner and accidentally bumped another burner then didn't pay attention to the nasty smell until the toast was.....well, toast. And my house stinks like a combination of dog/cat urine and burned plastic now. Thankfully it's cool enough to open windows.
But, tonight I'm getting to experience extremely early labor..........yippee........
But, tonight I'm getting to experience extremely early labor..........yippee........
Sunday, August 21, 2011
What If?
I am not supposed to think about what ifs. I have a tendency to let them get totally out of control. We spent a great deal of time and energy on first developing a high level of trust with both doctors, then on getting me very medicated for anxiety for about 9 months or so, and then working to teach me to reach to the thought of "what if" with a differently phrased thought. It works. I do it automatically most of the time and am aware when I don't and consciously fix it. But I think right now, 2 days before exploratory surgery, what ifs are fair game.
Right now these are the big ones:
Right now these are the big ones:
- What if the medication I just took, which I take tonight and tomorrow night to make my cervix nice and easy to open, causes cramping and increases my pain level?
- What if I am as tired yesterday as today but HAVE to have my house cleaned because they are coming to clean carpets before I leave for surgery?
- What if they find something?
- What if they don't?
- What if they have trouble managing my pain with the limited options?
- What if my surgeon is as fed up with me as i felt she was (when I was in no place to judge whatsoever due to pain, fatigue, and fear?
- What if they make me go back to work before I feel ready? (I know Dr. Mind is on my side here so I doubt this happens. But it could)
- What if my basement floods again while I'm away?
- What if my house continues to smell the way it does right now, which is AWFUL, from the wet carpets? (I spent a lot of time and money and effort on getting right of a persistent odor of pet urine from the previous owners. Now that the carpet got wet it is back, worse than ever.)
- What if i'm too tired to do anymore work in this house tonight and things aren't done in time tomorrow? If I have side effects from the medication I took I'll cancel, but I would really like to have this done before I come home.
- What if there is a surprise in what they find? There are many things my age puts me at low risk for but my age doesn't take into account the vast quantities of strong meds I've taken over the years.
I could go on. Again, worry is normal here and I don't think any of this is out of control, but I am just so incredibly sleepy. Which means that soon I sleep, no matter what, and deal with the rest of it (my house) tomorrow).
Saturday, August 20, 2011
I need to get off these drugs
I got a new dehumidifier to help with my flooded basement today. Too bad I didn't get the bucket in correctly so that it drained all over the already wet carpet which had dried to the point of not being squishy. Now it is squishy.
Today has physically been hard. I'm trying to back off the pain meds as they don't do much except have side effects. This has minimal effect on my pain but some I guess. But today was painful and I did too much. Then I took a long nap and still have work to do to get my bed cleaned off.
Aside from the flood my house is nearly clean. Like spic and span, totally reorganized clean. I am having some carpet cleaned Monday before I leave for Cleveland so I will be ready for surgery early (I hope) Tuesday. I am hoping that the next result will be my feeling able to relax during the recovery process.
I am anxious about that. I guess physically I probably will be ready to go back 2 weeks post-op. Emotionally I want to have the separately cleared by Dr. Brain. The anxiety at this point is so intense and the effects of the whole thing have me so tired and emotionally worn out that I do not want to be sent back because I'm physically ok when emotionally I still feel crummy. I emailed her to ask about whether we can either hold my return until I see her (which is about 10 days post the surgical probable return point) or if I can come see her during the week to be cleared by her before I head back. She didn't answer. I know though that Dr. Mind is very supportive of this request because he says I have never asked for help in going slower, instead I've always begged to go back the second it was feasible. This is so different though. I feel beaten up going in and that's before people make incisions in my belly and fill it with gas, remove various pieces of tissue and who knows what all. I haven't slept except when my pain meds totally knock me out in weeks. I've felt horrible for months. When I was at pre-op the internal medicine person who cleared me for surgery told me that my iron levels and hemoglobin (which were at the very bottom of normal) were low enough that while barely avoiding intervention they would make me feel lousy. (Normal iron has a really big range, maybe 60 numbers. Mine was 5 too high to be treated). That means blood loss may make me feel pretty crummy and since it appears I'm going to have my period for this fun time in my life too I'm going to lose even more here. But even that is physical. Emotionally I can't really explain how this feels and this is before I even know what is wrong. I am just so tired,tired beyond my ability to describe. Not just because of being sick, but because of the stress. I can't stand the stress anymore. I try so hard to not consider "What if?" but there are some ugly what-ifs. I also think I irritated the surgeon. Or that she is a bit tired of trying to deal with all the complexities of this and my anxiety as well. I appreciate that this has been way more preparation for something relatively minor than is usual, but I did not choose the conditions that have made it this way. Essentially I feel like a pain in the butt patient. But I also suspect that's got a lot to do with me and little to do with anything real.
Regardless I just want it DONE. Tomorrow evening I take the first dose of 2 days worth of meds that open my cervix to make the procedures easier. I can't believe it's actually time for that.
And I suppose to need to deal with laundry. I so don't want to go find out that my new dehumidifier actually leaks and that I had it together correctly (a distinct possibility).
Today has physically been hard. I'm trying to back off the pain meds as they don't do much except have side effects. This has minimal effect on my pain but some I guess. But today was painful and I did too much. Then I took a long nap and still have work to do to get my bed cleaned off.
Aside from the flood my house is nearly clean. Like spic and span, totally reorganized clean. I am having some carpet cleaned Monday before I leave for Cleveland so I will be ready for surgery early (I hope) Tuesday. I am hoping that the next result will be my feeling able to relax during the recovery process.
I am anxious about that. I guess physically I probably will be ready to go back 2 weeks post-op. Emotionally I want to have the separately cleared by Dr. Brain. The anxiety at this point is so intense and the effects of the whole thing have me so tired and emotionally worn out that I do not want to be sent back because I'm physically ok when emotionally I still feel crummy. I emailed her to ask about whether we can either hold my return until I see her (which is about 10 days post the surgical probable return point) or if I can come see her during the week to be cleared by her before I head back. She didn't answer. I know though that Dr. Mind is very supportive of this request because he says I have never asked for help in going slower, instead I've always begged to go back the second it was feasible. This is so different though. I feel beaten up going in and that's before people make incisions in my belly and fill it with gas, remove various pieces of tissue and who knows what all. I haven't slept except when my pain meds totally knock me out in weeks. I've felt horrible for months. When I was at pre-op the internal medicine person who cleared me for surgery told me that my iron levels and hemoglobin (which were at the very bottom of normal) were low enough that while barely avoiding intervention they would make me feel lousy. (Normal iron has a really big range, maybe 60 numbers. Mine was 5 too high to be treated). That means blood loss may make me feel pretty crummy and since it appears I'm going to have my period for this fun time in my life too I'm going to lose even more here. But even that is physical. Emotionally I can't really explain how this feels and this is before I even know what is wrong. I am just so tired,tired beyond my ability to describe. Not just because of being sick, but because of the stress. I can't stand the stress anymore. I try so hard to not consider "What if?" but there are some ugly what-ifs. I also think I irritated the surgeon. Or that she is a bit tired of trying to deal with all the complexities of this and my anxiety as well. I appreciate that this has been way more preparation for something relatively minor than is usual, but I did not choose the conditions that have made it this way. Essentially I feel like a pain in the butt patient. But I also suspect that's got a lot to do with me and little to do with anything real.
Regardless I just want it DONE. Tomorrow evening I take the first dose of 2 days worth of meds that open my cervix to make the procedures easier. I can't believe it's actually time for that.
And I suppose to need to deal with laundry. I so don't want to go find out that my new dehumidifier actually leaks and that I had it together correctly (a distinct possibility).
Friday, August 19, 2011
I thought
I thought losing my brand new Nook was a tragedy. I am doing so many dumb things because of being on narcotics and stupid from them (plus I've had one night I've slept in days).
And then on the way home from the store we were stook because the street was flooded. It was horrible because the way the water flowed it went directly into one old man's basement and he was trying to get water out of his shed as well. We couldn't figure out quite why or how or where all if it came from, and then we finally got home (my mom was with me) and the creek across from my home was rushing harder than I have ever heard it in the last 8 years. I have a drain that is a fairly major one for this end of the city and it tends to back up frequently. I went and unclogged it and thought that was the final effect on my life. Then my mother went downstairs and discovered that my basement flooded. Thankfully everything down there was in plastic bins pretty much. I had a lot of laundry that I'd let build up, things that are to be donated or sold to consignment and blankets that I didn't need yet. Everything is soaked so I have to do about 10 loads of laundry ASAP before it is ruined. Even then, thank God because I have a bigger washer than a year ago and will get this done in half the time. There are fans running and my not-very-consistent dehumidifier and so it's very loud but hopefully will dry in the next day or so without the carpet i just got to stop stinking beginning to stink again. When my mother left she drove up the hill that goes behind my house and said water is pouring down the hill, so I probably am not done with the flooding. She said the whole downhill part of town is completely saturated. It rained while we were out. Here it must have rained harder than it ever has since I've lived here and essentially had flash flooding. Awful.
Hopefully everyone is able to get dried out. As for me I need to empty the dehumidifier and change laundry out.
And then on the way home from the store we were stook because the street was flooded. It was horrible because the way the water flowed it went directly into one old man's basement and he was trying to get water out of his shed as well. We couldn't figure out quite why or how or where all if it came from, and then we finally got home (my mom was with me) and the creek across from my home was rushing harder than I have ever heard it in the last 8 years. I have a drain that is a fairly major one for this end of the city and it tends to back up frequently. I went and unclogged it and thought that was the final effect on my life. Then my mother went downstairs and discovered that my basement flooded. Thankfully everything down there was in plastic bins pretty much. I had a lot of laundry that I'd let build up, things that are to be donated or sold to consignment and blankets that I didn't need yet. Everything is soaked so I have to do about 10 loads of laundry ASAP before it is ruined. Even then, thank God because I have a bigger washer than a year ago and will get this done in half the time. There are fans running and my not-very-consistent dehumidifier and so it's very loud but hopefully will dry in the next day or so without the carpet i just got to stop stinking beginning to stink again. When my mother left she drove up the hill that goes behind my house and said water is pouring down the hill, so I probably am not done with the flooding. She said the whole downhill part of town is completely saturated. It rained while we were out. Here it must have rained harder than it ever has since I've lived here and essentially had flash flooding. Awful.
Hopefully everyone is able to get dried out. As for me I need to empty the dehumidifier and change laundry out.
Thursday, August 18, 2011
My life is not bad. What I am going through is nothing. please, please read
I support a charity called Reese's Rainbow as much as I can. It helps people who want to adopt a child with special needs for a country where those children are institutionalized at an early age and mostly die by age 10 to raise funds, find a child, and provide connections.
Through one of the blogs I read related to this I found this link. If the word link isn't another color that is a design flaw and the word link IS a link. I will caution you that this is not something you probably want your children to see. You do not want to see it.violence, actual pain, or even a face showing suffering. There is a 10 year old who weighs 10 lbs and is smaller than most 2 week old babies. (To be entirely fair I would suspect she has some form of dwarfish besides Down syndrome but she still has been severely neglected and not feed appropriately.) She needs help, now. It's so sad that it resonates (there is no But you may be able to help make it right. I am asking each of you to please do what you can here. $2 helps. My heart is breaking because at this moment I do not have the money to even come up with $2, since I may have no income for a month and have very little sitting around. I'm living on credit until disability is approved. When I have money this is a huge priority. This child is clearly a fighter, a fighter beyond all imagination. There is no way she should be alive.
This puts so much in perspective.
Through one of the blogs I read related to this I found this link. If the word link isn't another color that is a design flaw and the word link IS a link. I will caution you that this is not something you probably want your children to see. You do not want to see it.violence, actual pain, or even a face showing suffering. There is a 10 year old who weighs 10 lbs and is smaller than most 2 week old babies. (To be entirely fair I would suspect she has some form of dwarfish besides Down syndrome but she still has been severely neglected and not feed appropriately.) She needs help, now. It's so sad that it resonates (there is no But you may be able to help make it right. I am asking each of you to please do what you can here. $2 helps. My heart is breaking because at this moment I do not have the money to even come up with $2, since I may have no income for a month and have very little sitting around. I'm living on credit until disability is approved. When I have money this is a huge priority. This child is clearly a fighter, a fighter beyond all imagination. There is no way she should be alive.
This puts so much in perspective.
not my plan
Yesterday I finally just lost it. I cried for many hours last night. I was so overwhelmed, so tired (I'm having a lot of trouble sleeping now as the pain med is not all that effective anymore even at a high dose), and so afraid. I haven't been that scared in this process before, but yesterday I found out that there's a decent chance of having no explanation for what is going on. With a lot of thought I think she said this more meaning she doesn't know what is going on than she meant the cause may not be seen, but the only thing I don't feel equipped to handle is being told nothing was visible. That lends itself to far too many doubts as even though she did not say that no findings meant I was making it up, and in fact she said sometimes just having had horrible bleeding for a long time will do that (and that part we know has a cause, and in theory I suppose could somehow be the reason for the pain). So no matter what there's a reason; the bleeding issue or something is found. But hearing that I may have no answer really is hard because I develop serious self-doubt in that situation. It's because I was always taught that complaints were just making things up and so all the emotions that go into this have wrapped around that one thing. I know in reality that my feelings are not logical as well as knowing that my exhaustion has much to do with my feelings. I also know that finally crying and letting go of some of the stress and anxiety was probably good. It also had to do with exhaustion; it's been days or a week since I could fall asleep and longer than that since I slept well. So I did what I knew I needed to do and took a PRN seroquel too. So that along with everything else didn't make me sleep until after 3, but now I'm sleepy. I'm scared to nap as I don't want to be too groggy to see Dr. Mind tonight but I think a nap may be a requirement life. For sure changing positions is....ow......so goodbye.
Wednesday, August 17, 2011
overwhelmed
I don't have the emotional strength to go into what set me off (nothing bad, just not something I cope with easily), and I know that exhaustion from a zillion appointments and having to be upright for long periods of time combined with pain, combined with just not being able to make decisions because of being so extremely tired and in pain and on drugs, combined with who knows what else and I've had it. I'm going to take meds soon and sleep; I'm waiting for time for pain meds as I'm going to take some extra meds today so I can get some extra sleep I hope.
I just want this over with so badly. I've been crying for hours and that doesn't do any good, but I just can't cope anymore.
I just want this over with so badly. I've been crying for hours and that doesn't do any good, but I just can't cope anymore.
Tuesday, August 16, 2011
oohhhh (slow dawning of truth)
I'm obviously not my sharp self (ha). I thought the blood pregnancy test was funny since they make a huge fuss that you have to pass a urine test the day of surgery when you are having a D&C (one can understand). But I didn't realize the truth. I keep joking about looking pregnant. Except that I really do. So much that a word-renowed gynecologist thought there was some chance of pregnancy. I bet that they figured there was a tiny chance that the reason I was up for clots and bleeding to death a couple months ago could have been a miscarriage and on that tiny chance (always considered greater because I'm bipolar and we have been known to be promiscuous and lie about it) they needed to be sure I wasn't pregnant or carrying the remnants of a miscarriage causing my pregnant look.
Cute. Understandable and responsible, but cute. So now I've had my first (that I know of; usually they sneak urine pregnancy tests) blood pregnancy test in the 15 pregnancy tests I've had to date.
Fun stuff......
Cute. Understandable and responsible, but cute. So now I've had my first (that I know of; usually they sneak urine pregnancy tests) blood pregnancy test in the 15 pregnancy tests I've had to date.
Fun stuff......
I guess this is good news
I just got back the results of my pregnancy test. We'll all be shocked to know that another virgin birth is not pending. And I get another pregnancy test next week!!! YAY!
Pre-op was......a lot. A lot of questions asked repeatedly. A lot of pain from sitting upright. A lot of being told things I already know but have to be told again. A lot of nice people, a few really cranky ones. I still know nothing about anesthesia as I didn't actually meet with anyone who will be working with me and they did not seem to even like this protocol I'm on, or approve or something. I apparently had to have the approval of one particular person based on my psychiatrist stating that I am at risk for self harm if off medications. I don't think today's anesthesiologist thought that was a good idea or something. However, he did play "guess endotracheal tube size" by having my open my mouth for the resident to guess and then concurring. Yippee.
I saw the surgeon I hadn't met before; I heard her talking on the phone to the other surgeon and referring to my big old belly. I hope tomorrow when I see the other surgeon, the one who knows me, that she can explain the belly.
And now I shall enjoy my evening of doing nothing.
Pre-op was......a lot. A lot of questions asked repeatedly. A lot of pain from sitting upright. A lot of being told things I already know but have to be told again. A lot of nice people, a few really cranky ones. I still know nothing about anesthesia as I didn't actually meet with anyone who will be working with me and they did not seem to even like this protocol I'm on, or approve or something. I apparently had to have the approval of one particular person based on my psychiatrist stating that I am at risk for self harm if off medications. I don't think today's anesthesiologist thought that was a good idea or something. However, he did play "guess endotracheal tube size" by having my open my mouth for the resident to guess and then concurring. Yippee.
I saw the surgeon I hadn't met before; I heard her talking on the phone to the other surgeon and referring to my big old belly. I hope tomorrow when I see the other surgeon, the one who knows me, that she can explain the belly.
And now I shall enjoy my evening of doing nothing.
Monday, August 15, 2011
God works in mysterious ways-a real post
So part of what I've been dealing with/talking about for the last few months is knowing that even if I could have a baby and manage my bipolar I very likely have been infertile for years and assuming this is endo and that it can be removed the only chance I'll really have to get pregnant ever given my age and the nature of endo would be in the next few months before it can recur. I don't know why that makes it seem harder; I've known for nearly 10 years there would be no children and Dr. Brain and I have had a few very honest talks about right now I'm stable enough that if I desperately wanted a baby she would support that although she will not say it would be GOOD for me, but that (Even before all this) it needs to be a NOW thing as I'm over 35 and this is as stable as it gets for me and we have no way to know that this will last forever. But not only am I sticking to my promise to myself to not raise a child with my moods, that would require donor sperm and all that this entails and I am not interested.
I don't know how many of you have faced wanting children more than anything in the world and knowing they aren't going to come. It's a pain that I have experienced separately than most of the things I have never had that I thought I would. But children are not something that fall into a category, maybe just because of anything I won't have because of illness I believe this has been the most painful, even though I know ultimately it comes down to my having made a responsible decision instead of doing what my heart longs for. And so the closest I'll come to a child is my niece and any siblings she may have, and the closest to pregancy would be a combination of the 6 months of puking from lithium toxicity and the rumors I was pregnant as a teenager because I was playing a pregnant woman in a play. Oh and in grad school I was a pretend patient for a final exam for the class behind mine and played a pregnant teenager who had been paralyzed in a car accident. The belly was annoying over 2 days in a wheelchair.
Part of what is hard about missing out on having children is that there are a zillion stages that you don't get to go through. Missing out on getting a PhD merely meant that for a time I was sad because I knew I couldn't do that. I don't feel jealous of my sister who will be Dr.Anne's Mommy in about a year's time. But her pregnancy was very hard to watch. I think this is all because having a baby has so many physical changes and things you can only experience with pregnancy. I can love and watch Anne grow and learn so much and love her with all my heart and it does take away the no baby ache some. But watching my sister grow through pregnancy hurt.
Well, I know now what I would look like pregnant. I have no idea what good this does me, but there is no more wondering. As I've been saying my belly is huge. I bought pajamas a good size or 2 bigger than usual because I will need them post-op. I'm wearing them tonight and because of the bagginess and style if someone saw me in them they would be absolutely certain I'm quite pregnant. (Plus I have the PMY boobs that mean I'll have a period sometime in the next 3 weeks; I miss that so much. Used to be big sore breasts meant 3 days until my 4 day long light period. Now it means nothing except that sometime soon I'm gonna bleed like crazy. When I get home I'll take a picture so you can all see and congratulate me on my belly. I'm a bit scared of what it will look like post-op because it will be full of this gas they use to make space to work and so I supposed could be even bigger than now, depending on whether they figure out why it's so big as is.
So, I guess that after making the decision to tell the dr. that if she believe I will need a hysterectomy within the next 5 years and if one will prevent some of the problems from being back in a few months then I would like her to consider doing it now on the basis of my inability to handle the usual hormone treatments, God is letting me know what a very pregnant Jen would look like. It's as funny as I ever thought it would be. I actually look frighteningly like my sister did just because of how she carried and these pajamas look like something she wore a lot near the end of her pregnancy.
I don't know how many of you have faced wanting children more than anything in the world and knowing they aren't going to come. It's a pain that I have experienced separately than most of the things I have never had that I thought I would. But children are not something that fall into a category, maybe just because of anything I won't have because of illness I believe this has been the most painful, even though I know ultimately it comes down to my having made a responsible decision instead of doing what my heart longs for. And so the closest I'll come to a child is my niece and any siblings she may have, and the closest to pregancy would be a combination of the 6 months of puking from lithium toxicity and the rumors I was pregnant as a teenager because I was playing a pregnant woman in a play. Oh and in grad school I was a pretend patient for a final exam for the class behind mine and played a pregnant teenager who had been paralyzed in a car accident. The belly was annoying over 2 days in a wheelchair.
Part of what is hard about missing out on having children is that there are a zillion stages that you don't get to go through. Missing out on getting a PhD merely meant that for a time I was sad because I knew I couldn't do that. I don't feel jealous of my sister who will be Dr.Anne's Mommy in about a year's time. But her pregnancy was very hard to watch. I think this is all because having a baby has so many physical changes and things you can only experience with pregnancy. I can love and watch Anne grow and learn so much and love her with all my heart and it does take away the no baby ache some. But watching my sister grow through pregnancy hurt.
Well, I know now what I would look like pregnant. I have no idea what good this does me, but there is no more wondering. As I've been saying my belly is huge. I bought pajamas a good size or 2 bigger than usual because I will need them post-op. I'm wearing them tonight and because of the bagginess and style if someone saw me in them they would be absolutely certain I'm quite pregnant. (Plus I have the PMY boobs that mean I'll have a period sometime in the next 3 weeks; I miss that so much. Used to be big sore breasts meant 3 days until my 4 day long light period. Now it means nothing except that sometime soon I'm gonna bleed like crazy. When I get home I'll take a picture so you can all see and congratulate me on my belly. I'm a bit scared of what it will look like post-op because it will be full of this gas they use to make space to work and so I supposed could be even bigger than now, depending on whether they figure out why it's so big as is.
So, I guess that after making the decision to tell the dr. that if she believe I will need a hysterectomy within the next 5 years and if one will prevent some of the problems from being back in a few months then I would like her to consider doing it now on the basis of my inability to handle the usual hormone treatments, God is letting me know what a very pregnant Jen would look like. It's as funny as I ever thought it would be. I actually look frighteningly like my sister did just because of how she carried and these pajamas look like something she wore a lot near the end of her pregnancy.
eee
I know what happened really is nice, but I just spent hours in the car (ie hurting, am just getting settled into a motel, and will be sharing a wall/adjoining door with some very loud people. I heard them complaining during checkin about noise last time they were here and they are annoying me greatly. I am, however, cranky). The truth is that I have a nice enough room given the cost and free parking/free shuttle to my appointments. I'm just anxious.
I have no idea how to handle the pain tomorrow. If I take a whole vicodin I could get really sleepy. That has not been happening though but it still sporadically does. Half does little. I have some higher dose ones that I could take half of but have no clue what the potency of that would be. I had emailed Dr. Body who told me last week he'd help with the pain as much as he could but I think forgot to mention he was leaving town this week. I think I actually knew that at some point but he didn't mention it this time. I also had a question about the blood I always have in my urine; I know it was worse last week and that the dr. needs to know this. I do not know what my baseline amount is and I'm not sure she she does because when I was referred Dr. Body had just changed practices and we didn't have the records. He would have access to this from the last 18 months of urine checks but I don't.
So his partner answered me. That was very nice and she had at least been briefed to expect to hear from me and help if possible. However, she just made me more anxious by telling me she won't help with pain management, that Dr. Body can when he returns. Um, I'll have had surgery by then. I needed specific help for tomorrow and Wednesday, which maybe she couldn't pick up easily from context but I don't think she wanted to help on that one no matter what. understandable, but say that instead of giving a condescending (cranky on my part) answer. Then she told me the dr. doing the bladder test would have that information before the procedure. That's just making assumptions and this is why I'm frustrated. That's not true. For one thing I was referred for this procedure a year and a half ago. For another Dr. .Body had little to do with because of his pratice change; I don't know that anything was even sent up here. And while I realize Dr. Sub isn't familiar with me at all it felt just a bit condescending to tell me that things were handled differently than they were given that I was there. A much better answer would be to either check the labs and give me an answer or tell me that she did not know. I'm not stupid and I think the vast majority of patients know whether information was exchanged when seeing a specialist; she does not know what it took to get me to do this or of the horrible experience I had in the midst, but still.
Yet it was nice that she answered. I'm a bit interested what she would do if my pain worsened this week since I'm supposed to wait for Dr. Body to get back, but whatever. I'll have to get someone up here to write for more vicodin anyway since I'm almost out.
Weird. The loud women next door must not have liked their room. Now there is an equally loud man next door but I think he's talking on a phone, so that at least will end.
And the best thing of all...my room has a chair and footstool in it that let me sit fairly comfortably for a bit. Now I need to get meds and sleep so I'll move to the bed in a minute, but for the time I'm here tomorrow afternoon/night and Wed. morning I'll get to sit up some. I've not done much of that lately..........
I have no idea how to handle the pain tomorrow. If I take a whole vicodin I could get really sleepy. That has not been happening though but it still sporadically does. Half does little. I have some higher dose ones that I could take half of but have no clue what the potency of that would be. I had emailed Dr. Body who told me last week he'd help with the pain as much as he could but I think forgot to mention he was leaving town this week. I think I actually knew that at some point but he didn't mention it this time. I also had a question about the blood I always have in my urine; I know it was worse last week and that the dr. needs to know this. I do not know what my baseline amount is and I'm not sure she she does because when I was referred Dr. Body had just changed practices and we didn't have the records. He would have access to this from the last 18 months of urine checks but I don't.
So his partner answered me. That was very nice and she had at least been briefed to expect to hear from me and help if possible. However, she just made me more anxious by telling me she won't help with pain management, that Dr. Body can when he returns. Um, I'll have had surgery by then. I needed specific help for tomorrow and Wednesday, which maybe she couldn't pick up easily from context but I don't think she wanted to help on that one no matter what. understandable, but say that instead of giving a condescending (cranky on my part) answer. Then she told me the dr. doing the bladder test would have that information before the procedure. That's just making assumptions and this is why I'm frustrated. That's not true. For one thing I was referred for this procedure a year and a half ago. For another Dr. .Body had little to do with because of his pratice change; I don't know that anything was even sent up here. And while I realize Dr. Sub isn't familiar with me at all it felt just a bit condescending to tell me that things were handled differently than they were given that I was there. A much better answer would be to either check the labs and give me an answer or tell me that she did not know. I'm not stupid and I think the vast majority of patients know whether information was exchanged when seeing a specialist; she does not know what it took to get me to do this or of the horrible experience I had in the midst, but still.
Yet it was nice that she answered. I'm a bit interested what she would do if my pain worsened this week since I'm supposed to wait for Dr. Body to get back, but whatever. I'll have to get someone up here to write for more vicodin anyway since I'm almost out.
Weird. The loud women next door must not have liked their room. Now there is an equally loud man next door but I think he's talking on a phone, so that at least will end.
And the best thing of all...my room has a chair and footstool in it that let me sit fairly comfortably for a bit. Now I need to get meds and sleep so I'll move to the bed in a minute, but for the time I'm here tomorrow afternoon/night and Wed. morning I'll get to sit up some. I've not done much of that lately..........
What not to do when you are a suicide risk
Thanks to mania I was awake pretty late last night. I got hungry and sliced up some watermelon. Which is when I got stupid. I used a sharp but too small knife because I was hurrying/not thinking and it slipped. The result is not pretty. I took off a nice sized and deep chunk of skin. It didn't cut deep so stitches were out, but to put any dressing on it requires folded guaze for protection (it hurts and bleeds with pressure) and then a big strip of tape around my wrist. It's so very cute....It also is very likely to scary Dr. Mind to death as it looks like I've been cutting myself when you see the bandage. That makes it also extra fun that I'll be seeing a zillion doctors who will all ask about this in the next few days.
Being a constant suicide risk has some downsides....Also, why don't I do these things in winter when long sleeves cover my work?????
Being a constant suicide risk has some downsides....Also, why don't I do these things in winter when long sleeves cover my work?????
Sunday, August 14, 2011
Excessive anxiety --->Mania
I barely slept last night because of agitation. I hoped it was thunderstorms. It was not. I needed to keep busy and that has continued through today. Unfortunately busy leads to sore and when I'm manic I ignore pain until it's too late to just slow down and recover from it.I got a lot done today. That is good. However it has all had a cost and so I hurt, but I'm still agitated. I hope that if I can sleep tonight that things will improve. We'll see. Tomorrow I have to drive back to Cleveland to spend the night for my early morning pre-op Tuesday and Wednesday. I really wish I were seeing my doctor first; as it is the one I haven't met is first and will therefore be the one who I need to help with a few things, like a couple of medications, and who is going to encounter my huge belly first.
I hate this feeling. I am waiting until pain med time to take my other meds so I don't sleep through pain med time, assuming my psych meds do their thing and make me sleep tonight. If it weren't for pre-op I'd just take some more to sleep but I don't want to have a repeat of last thursday when I couldn't wake up to save my life--at 5 pm when I needed to leave to see Dr. Mind at 6 pm.
At least I can be pretty sure that if I weren't so anxious I wouldn't be manic, and that anxiety is normal. Those are good things.
I hate this feeling. I am waiting until pain med time to take my other meds so I don't sleep through pain med time, assuming my psych meds do their thing and make me sleep tonight. If it weren't for pre-op I'd just take some more to sleep but I don't want to have a repeat of last thursday when I couldn't wake up to save my life--at 5 pm when I needed to leave to see Dr. Mind at 6 pm.
At least I can be pretty sure that if I weren't so anxious I wouldn't be manic, and that anxiety is normal. Those are good things.
Saturday, August 13, 2011
Upcoming
So please pray for me over the next 10 days. I have 2 days of pre-op this week. That involves a lot of testing, a lot of question asking, and probably 2 pelvics. I can't explain how painful those are at this point. Well, I don't KNOW at this point, but bad based on the last one. That is with her trying hard to not hurt me because I think she wants to avoid negative associations with something I'm only really learning to manage. I fear it will also include a pulmonary function test and I can't tell you how much I hate those.I'm too goal-oriented and so I wind up trying to score normal and then gasping for air. I get confusing results too as I push so hard that I score in the low end of normal when my asthma just isn't that well controlled (although being housebound/bedbound does help in the asthma department so maybe it won't be so hard). Because of long-term antipsychotic use I'll also have an EKG which means more nudity with another stranger, etc. I also can't be zonked on pain meds the day I drive up, the next day which is 8-9 hours of testing, and the day after that is one appointment and driving home. Not good.
Next week is surgery and while I'll be thankfully unconscious I'll also be very naked for a very long time with a lot of observers (and participants come to think of it). I still don't know and probably will not know how long I'll be in the hospital; it may be 23 hours, it may be a few days. Apparently for insurance purposes they'll decide that day instead of the protocol dictating as I'd been told before. I like to know what is happening so am less than fond of this although I understand.
I'll just be so glad to have this over with. I hope the pain has a very obvious source and is gotten rid of easily and permanently.
And on that note I need to get some food, more pain medication, all my psych meds and get to sleep. I hope.
Next week is surgery and while I'll be thankfully unconscious I'll also be very naked for a very long time with a lot of observers (and participants come to think of it). I still don't know and probably will not know how long I'll be in the hospital; it may be 23 hours, it may be a few days. Apparently for insurance purposes they'll decide that day instead of the protocol dictating as I'd been told before. I like to know what is happening so am less than fond of this although I understand.
I'll just be so glad to have this over with. I hope the pain has a very obvious source and is gotten rid of easily and permanently.
And on that note I need to get some food, more pain medication, all my psych meds and get to sleep. I hope.
I'm on drugs but this still was weird
I went to see Dr. Brain today. We'll talk another day about how little I enjoyed missing pain meds to do that. But, I had a very, very weird experience.
On Saturdays everything except Dr. Brain's clinic closes at noon. I see her at 1 as the last appointment. I got there today about 12:45, when there are usually very few people around. I went to the bathroom and when I pushed open the door it hit someone. This scared me enough I yelled. I apologized profusely and got a sarcastic "that's ok, it's not like you'd expect someone to BE in here or anything". Which was weird enough. But the weirdest thing? This woman was in the corner behind the door. There is nothing there and you wouldn't want to go there because that's how you get smacked by the door. There's no way she was stepping away from the trash or sink or anything; she was purposefully standing behind a public door, facing into the corner, and expecting nobody to open the door to the public bathroom. Chances are reasonable it was another psych patient, although most people seen on Saturdays are severe depression pts.; I'm the exception to the clinic's purpose because most people don't drive 2 hours each way and need monthly visits for life and I've been a Saturday pt. for nearly 10 years now. Not that you have to be a psych pt. to be weird, but this was beyond weird, and it frightened me enough that I will be using the bathroom on Dr. Brain's floor from now on.
Weird, weird, weird.
On Saturdays everything except Dr. Brain's clinic closes at noon. I see her at 1 as the last appointment. I got there today about 12:45, when there are usually very few people around. I went to the bathroom and when I pushed open the door it hit someone. This scared me enough I yelled. I apologized profusely and got a sarcastic "that's ok, it's not like you'd expect someone to BE in here or anything". Which was weird enough. But the weirdest thing? This woman was in the corner behind the door. There is nothing there and you wouldn't want to go there because that's how you get smacked by the door. There's no way she was stepping away from the trash or sink or anything; she was purposefully standing behind a public door, facing into the corner, and expecting nobody to open the door to the public bathroom. Chances are reasonable it was another psych patient, although most people seen on Saturdays are severe depression pts.; I'm the exception to the clinic's purpose because most people don't drive 2 hours each way and need monthly visits for life and I've been a Saturday pt. for nearly 10 years now. Not that you have to be a psych pt. to be weird, but this was beyond weird, and it frightened me enough that I will be using the bathroom on Dr. Brain's floor from now on.
Weird, weird, weird.
Friday, August 12, 2011
Hmm, I may be awake
I don't really trust myself when it comes to wakefulness right now. I am asleep so much and when I have thought I was awake and sent what I thought were perfectly reasonable emails I have later discovered that nearly every word needed to be decoded. Or I respond to something and find out that I was so far off base in what I thought I was responding to that I made no sense. Right now though I think the risk is lowered. I am certainly under the influence but a little less so.
The only problem I may be slightly less groggy but I don't have much to say. I left the bed for a few hours Monday to see Dr. Body and a few hours Tuesday to see Dr. Mind. I tried to go see Dr. Mind yesterday but even though I stopped taking vicodin at noon I couldn't get awake enough to drive safely. I hate doing that because he loses money when I cancel that late but I truly thought that was enough time to get clear-headed. Tomorrow I am going to see Dr. Brain. She said we could do a phone session but I have too many questions to make that efficient and I have to get out of here to get food anyway.
My cat is driving me crazy. She seems to think that if I am home she needs to eat every few hours. I get tired of her misbehaving (scratching things to make noise) and given in and then it just gets worse. I am hoping to get somthing like tuna that I can throw a tsp or 2 out when she pesters. It still reinforces bad behaviors but she does get very hungry sometimes from kidney failure and frankly if it lets me sleep right now I don't care.
Otherwise, not much to say. I found slippers I really liked only to find out they were boys'. But then I realized that I could fit into them, so I ordered a pair and am in love. Nothing I need for the hospital matches; my robe and slippers and pajamas if I start wearing those all clash. I couldn't care less. It has made for some interesting choices though; however I just couldn't find the slippers I wanted in a color that didn't clash with my robe and I know I'llwant my warm robe in the hospital since it is going to be cold unless it is unlike any other hospital ever. Even wearing real clothes on the psych until I was constantly cold and mad because I didn't pack nearly enough sweatshirts.
Good news is pre-op is only 4 days off and surgery only 10. Finally.
The only problem I may be slightly less groggy but I don't have much to say. I left the bed for a few hours Monday to see Dr. Body and a few hours Tuesday to see Dr. Mind. I tried to go see Dr. Mind yesterday but even though I stopped taking vicodin at noon I couldn't get awake enough to drive safely. I hate doing that because he loses money when I cancel that late but I truly thought that was enough time to get clear-headed. Tomorrow I am going to see Dr. Brain. She said we could do a phone session but I have too many questions to make that efficient and I have to get out of here to get food anyway.
My cat is driving me crazy. She seems to think that if I am home she needs to eat every few hours. I get tired of her misbehaving (scratching things to make noise) and given in and then it just gets worse. I am hoping to get somthing like tuna that I can throw a tsp or 2 out when she pesters. It still reinforces bad behaviors but she does get very hungry sometimes from kidney failure and frankly if it lets me sleep right now I don't care.
Otherwise, not much to say. I found slippers I really liked only to find out they were boys'. But then I realized that I could fit into them, so I ordered a pair and am in love. Nothing I need for the hospital matches; my robe and slippers and pajamas if I start wearing those all clash. I couldn't care less. It has made for some interesting choices though; however I just couldn't find the slippers I wanted in a color that didn't clash with my robe and I know I'llwant my warm robe in the hospital since it is going to be cold unless it is unlike any other hospital ever. Even wearing real clothes on the psych until I was constantly cold and mad because I didn't pack nearly enough sweatshirts.
Good news is pre-op is only 4 days off and surgery only 10. Finally.
Wednesday, August 10, 2011
Drugged
It's gonna be pretty quiet around here for a while I suspect. I saw Dr. Body and as I had assumed was taken off work so that I can take vicodin every 6 hours around the clock. I am therefore sleeping around 20 hours per day and the hours I am awake have a lot more to do with forcing myself to be awake for a little bit than anything else. Even during my awake hours I can be pretty heavily affected by grogginess; I sent Dr. Brain an email today that had so little in it that made sense that I'm amazed she got the meaning out of it. But the pain is much better and realistically I couldn't have handled another week of working in the pain I was in prior to the bladder spasms. Those seem to be resolving and good riddance as well. That was not a pleasant experience.
Not much else to say. The end of my pain med break is near and so I will post again when I am awake again. Sometime.
Not much else to say. The end of my pain med break is near and so I will post again when I am awake again. Sometime.
Sunday, August 07, 2011
Gonna be a long night
I definitely have a sinus infection. I've had enough of them to recognize the headache, plus I can see the puffiness under my right eye as well as feel it. Yes, I had had so many sinus infections that I've learned to poke around for "bogginess" myself. The good thing is that I had the right meds on hand; I have been doing nebulizer treatments frequently, I can at least take tylenol for headache pain, and I've had 2 of 14 doses of a strong antibiotic. The green stuff seems to be stopping although not the drainage which is the part that needs to stop to protect my lungs. I need to use my sinus rinse bottle before I go to sleep. The best part is that thus far I am not coughing all that much and it doesn't sound horrible. I actually have no idea what the effect on my lungs of an infection is if it doesn't actually turn into something like bronchitis, just that I'm to be careful and we'll deal with it when it happens. Time....
I looked in the mirror and was somewhat horrified. Pale, unhealthy looking skin, the clumps of hair that fall out daily (so much I have to gather it and throw it away so it doesn't clog the drain which is already partly clogged from what I don't catch) have started to cause serious thinning of my hair, my hair looks very unhealthy.
I actually started to write an email to Dr. Body to explain why I'll be in tomorrow. Then I realized it read like a horror show so I decided to scare him in person rather than risking being sent to the ER. If he makes me go after he sees me fine but I think he and possiblity the pulmonologist can handle this. I think I need a straight cath to fully empty my bladder, which then lets us see how big my belly is because of whatever is wrong in there. I don't know what happens after than to ensure peeing commences at 100% capacity. Or maybe I'm wrong and it's empty in there. it sure doesn't feel empty though. One thing about home health is that I've got a pretty good ability to identify needs and issues at this point.I also have the ability to identify my own abilities to provide care at home. Self-cathing? Bring it on. Home nursing to cath? Bring it on. I know a good agency....I just wish I'd never gone near percocet. No way to know and I'm glad I know before surgery that I can't have it, but still. Enough is enough.
I looked in the mirror and was somewhat horrified. Pale, unhealthy looking skin, the clumps of hair that fall out daily (so much I have to gather it and throw it away so it doesn't clog the drain which is already partly clogged from what I don't catch) have started to cause serious thinning of my hair, my hair looks very unhealthy.
I actually started to write an email to Dr. Body to explain why I'll be in tomorrow. Then I realized it read like a horror show so I decided to scare him in person rather than risking being sent to the ER. If he makes me go after he sees me fine but I think he and possiblity the pulmonologist can handle this. I think I need a straight cath to fully empty my bladder, which then lets us see how big my belly is because of whatever is wrong in there. I don't know what happens after than to ensure peeing commences at 100% capacity. Or maybe I'm wrong and it's empty in there. it sure doesn't feel empty though. One thing about home health is that I've got a pretty good ability to identify needs and issues at this point.I also have the ability to identify my own abilities to provide care at home. Self-cathing? Bring it on. Home nursing to cath? Bring it on. I know a good agency....I just wish I'd never gone near percocet. No way to know and I'm glad I know before surgery that I can't have it, but still. Enough is enough.
Figures
It's been a while since I had a med reaction. I had an allergic reaction to Bactrim sometime during the whooping cough disaster but I've had a lot of meds since then without my usual horrible reactions. Some have not been pleasant since the effects of asthma treatments on bipolar aren't pretty, but those were expected.
Last night the percocet finally kicked in and I was comfortable until nearly 4 when I woke and took the 2nd dose. That actually gave me a little bit of pain relief. And then (I suspect) three things conspired. Several of the possible things going on can cause urinary retention by impacting the bladder. Percocet can also cause urinary retention. And I already have urinary retention, probably because the unusual volume of urine my bladder handles in a day has stretched it. I'm used to this and just know that if I don't want UTIs I need to be sure to really empty my bladder, not just decide it's done.
You can see where I'm heading.....I woke up and really couldn't pee. I managed to finally at least get enough out to not hurt in yet another way, and then as the percocet has worn off I've been more successful. But that means of course that I can't have percocet, at least right now, and whatever is still in my bladder along with whatever is wrong has now made my belly so big that I look more like 6 months pregnant instead of 4 (and for those who are asking questions, I am not pregnant at all). it's been gradually increasing for some time and I suspect that this has finally become the deciding factor in whether I keep working because I'm pretty certain that I can't wear any of my scrub pants any more, including the ones I keep for when I want to wear layers in the winter. My biggest pair were pretty tight yesterday and my belly is even bigger now. I actually have a place where blood vessels have burst open because the skin is so stretched. And of course the pain is coming back and I can't take more percocet. I believe that pain now is including bladder spasms and after years of seeing people with catheters I know those hurt.
To make this even more fun not only is a cold or sinus infection a very, very bad thing for me at any time because of asthma and to being able to easily do what someone with asthma does with those situations-take steroids-, so I have done everything in my power to avoid germs. Well, yesterday my asthmatic symptoms offered proof of a possible infection brewing and so I pulled out the bottle of just-for-when-this-happens-on-a-weekend antibiotics I've had from Dr. Body for some time. The good news that the antibiotic should help if a UTI is brewing from all that nasty urine. The bad news is NOT NOW. I don't really know if this is something infectious or bacterial or not but I'd rather take one course of unneeded antibiotics than try to recover from illness enough to be intubated in 2 weeks.
So unless things change very drastically I'll be staying home tomorrow to go see Dr. Body and I suspect I am done working until after surgery. The pants thing will be one factor, but if I can't empty my bladder that's another, and the abdominal distension is so huge now that just the size and weight of my belly is getting uncomfortable, much less anything (aka pants) pushing on it. Last week was barely tolerable with pain. Things are worse now so I assume when the last of the percocet is gone the pain is going to be even worse, on top of the bladder discomfort and the cold sx. And I am also now aware that I work in a germy cesspool and perhaps being near germy people this week isn't so much ideal.
I could be wrong. Everything could turn around. I hope it does. However, there is something that tells me that since I've ignored the pain thus far that I have not avoided the ultimate outcome, just put it off a while. Dr. Body tells me pain is reason to be off work on disability. I don't know if my pants no longer fitting counts but I suspect something not pleasant is happening in my belly. I also suspect I'll have to go see Dr.Surgeon this week which is another reason I do not really think I'll be going back to work. My fear is that my cyst has grown a lot and that it could rupture which could be extremely painful if it's size is the cause of my abdomen's size.
Either that or I have gained a lot of weight really fast....My shirt is one leftover from 50 lbs ago and it is not fitting well.
So, life is about to get very interesting.....or very, very boring.
Last night the percocet finally kicked in and I was comfortable until nearly 4 when I woke and took the 2nd dose. That actually gave me a little bit of pain relief. And then (I suspect) three things conspired. Several of the possible things going on can cause urinary retention by impacting the bladder. Percocet can also cause urinary retention. And I already have urinary retention, probably because the unusual volume of urine my bladder handles in a day has stretched it. I'm used to this and just know that if I don't want UTIs I need to be sure to really empty my bladder, not just decide it's done.
You can see where I'm heading.....I woke up and really couldn't pee. I managed to finally at least get enough out to not hurt in yet another way, and then as the percocet has worn off I've been more successful. But that means of course that I can't have percocet, at least right now, and whatever is still in my bladder along with whatever is wrong has now made my belly so big that I look more like 6 months pregnant instead of 4 (and for those who are asking questions, I am not pregnant at all). it's been gradually increasing for some time and I suspect that this has finally become the deciding factor in whether I keep working because I'm pretty certain that I can't wear any of my scrub pants any more, including the ones I keep for when I want to wear layers in the winter. My biggest pair were pretty tight yesterday and my belly is even bigger now. I actually have a place where blood vessels have burst open because the skin is so stretched. And of course the pain is coming back and I can't take more percocet. I believe that pain now is including bladder spasms and after years of seeing people with catheters I know those hurt.
To make this even more fun not only is a cold or sinus infection a very, very bad thing for me at any time because of asthma and to being able to easily do what someone with asthma does with those situations-take steroids-, so I have done everything in my power to avoid germs. Well, yesterday my asthmatic symptoms offered proof of a possible infection brewing and so I pulled out the bottle of just-for-when-this-happens-on-a-weekend antibiotics I've had from Dr. Body for some time. The good news that the antibiotic should help if a UTI is brewing from all that nasty urine. The bad news is NOT NOW. I don't really know if this is something infectious or bacterial or not but I'd rather take one course of unneeded antibiotics than try to recover from illness enough to be intubated in 2 weeks.
So unless things change very drastically I'll be staying home tomorrow to go see Dr. Body and I suspect I am done working until after surgery. The pants thing will be one factor, but if I can't empty my bladder that's another, and the abdominal distension is so huge now that just the size and weight of my belly is getting uncomfortable, much less anything (aka pants) pushing on it. Last week was barely tolerable with pain. Things are worse now so I assume when the last of the percocet is gone the pain is going to be even worse, on top of the bladder discomfort and the cold sx. And I am also now aware that I work in a germy cesspool and perhaps being near germy people this week isn't so much ideal.
I could be wrong. Everything could turn around. I hope it does. However, there is something that tells me that since I've ignored the pain thus far that I have not avoided the ultimate outcome, just put it off a while. Dr. Body tells me pain is reason to be off work on disability. I don't know if my pants no longer fitting counts but I suspect something not pleasant is happening in my belly. I also suspect I'll have to go see Dr.Surgeon this week which is another reason I do not really think I'll be going back to work. My fear is that my cyst has grown a lot and that it could rupture which could be extremely painful if it's size is the cause of my abdomen's size.
Either that or I have gained a lot of weight really fast....My shirt is one leftover from 50 lbs ago and it is not fitting well.
So, life is about to get very interesting.....or very, very boring.
Saturday, August 06, 2011
Well...
I actually have something somewhat insightful to post but must wait until not under the effects of pain meds. Except I don't know that I am. I took 1/2 of a percocet about an hour ago and thus far don't feel groggy or painfree or anything except a little distant. I am going to give it a little longer than I guess I take the other half. I'm trying to guage the effects since I've only had one percocet in my life and that was 20 years ago. It's hard to know how I will respond to anything as my body is used to sedation. However until I know I'm reluctant to mix it with psych meds for fear it will be too much.
Today was weird. It started at 3:27 AM when I did that thing where you wake up having shot to a sitting position and gasping for air. Either something scared me or I had a nightmare. Or pain. I suppose that a particularly bad moment of pain could do that too. I think I did get about 30 minutes of nap before I went to work. Work was also weird. It involved a massive scheduling snafu. I did get some time in the office to organize things a bit before I have to be off, as pain may make me stop sooner than next Monday. Dr. Body has told me that he will write me off for pain management if I need the percocets and can't take them and drive. Since I am getting sleepy now I guess they do cause that, meaning they won't mix with work. My pain has been hanging at 7/10 and if I can get away with that and get some relief with percocets at night then that will be the plan. If it gets worse at all then I'm going to have to stay home, stay medicated and sleep it off. So in working toward that possibility my current charts at least are all up to date, my supervision stuff is organized for completion as far as I can take it on Tuesday, and I'm beginning to be unable to spell simple words. So I guess it is definitely sedating although I'm going to have to take the rest for pain I'm afraid.
OK, this stuff is literally having more effects by the minute. Time to try sleep.
Today was weird. It started at 3:27 AM when I did that thing where you wake up having shot to a sitting position and gasping for air. Either something scared me or I had a nightmare. Or pain. I suppose that a particularly bad moment of pain could do that too. I think I did get about 30 minutes of nap before I went to work. Work was also weird. It involved a massive scheduling snafu. I did get some time in the office to organize things a bit before I have to be off, as pain may make me stop sooner than next Monday. Dr. Body has told me that he will write me off for pain management if I need the percocets and can't take them and drive. Since I am getting sleepy now I guess they do cause that, meaning they won't mix with work. My pain has been hanging at 7/10 and if I can get away with that and get some relief with percocets at night then that will be the plan. If it gets worse at all then I'm going to have to stay home, stay medicated and sleep it off. So in working toward that possibility my current charts at least are all up to date, my supervision stuff is organized for completion as far as I can take it on Tuesday, and I'm beginning to be unable to spell simple words. So I guess it is definitely sedating although I'm going to have to take the rest for pain I'm afraid.
OK, this stuff is literally having more effects by the minute. Time to try sleep.
Friday, August 05, 2011
It's a learning experience
Maybe I will never have a good attitude about what my life is like again, but right now, at this moment in time, I am both medicated for pain and bundled with a hot pack that I think only distracts me by being hot but whatever, it's not constant stabbing pain.
18 months ago I started working on learning to express pain. The discovery that as a child I had been so unable to complain that I ran 5-10 miles routinely on a broken ankle from 2 days after breaking it until it caused me to damage another joint was very enlightening, especially when I was also hearing that I had very badly injured that same ankle again and proceeded to complain of "it's ok. It hurts but it's ok" which in turn led to the injury not being treated correctly and also prevented me from having surgery to repair it immediately which would have been ideal.
13 months ago I learned a harsh lesson in how much I needed to develop honesty with Dr. Body about pain. We had a long conversation about my past and my inability to talk about pain honestly and that he needed to know I would often understate or lie and that I needed help to describe and talk about it. Since then he has talked me through it a number of times and has even told me things like "your throat HAS to hurt" during the whooping cough mess. He was the first to suggest endometriosis back when I first complained of the sx because he pointed out I may only now be able to acknowledge pain I've had a long time.
I still struggle to complain about pain to most doctors, but I do ok with him. This week has included several conversations about pain, Dr. Body finding another pain med for me that I haven't gotten the script yet (please God tomorrow's mail) and after I had a really hard time calling my (wonderfully kind and understanding) gynecologist to let her know how much worse the pain is now and as I realized that if the pain intensifies too much I will not make it through these last few days of working. So today I had called her. I also had asked Dr. Body about what levels of pain are reasonable reasons to miss work (I can assume he thinks I'm there as he pretty much offered as many work excuses and pain med scripts as I want/need to get me through this. He's always taken a proactive approach to pain with me; since I can't take normal pain meds he has made sure I had what I can take available, even though it is narcotics.) I think I want to hear that I am justified in just feeling this hurts and there are limits to what I can do because of the pain. So I have a response. Except his server is down and so I can't get into the clinic's web page to access the answer. So even more than I already was, I am getting a nice lesson in patience.
Now I believe I have been patient enough........
18 months ago I started working on learning to express pain. The discovery that as a child I had been so unable to complain that I ran 5-10 miles routinely on a broken ankle from 2 days after breaking it until it caused me to damage another joint was very enlightening, especially when I was also hearing that I had very badly injured that same ankle again and proceeded to complain of "it's ok. It hurts but it's ok" which in turn led to the injury not being treated correctly and also prevented me from having surgery to repair it immediately which would have been ideal.
13 months ago I learned a harsh lesson in how much I needed to develop honesty with Dr. Body about pain. We had a long conversation about my past and my inability to talk about pain honestly and that he needed to know I would often understate or lie and that I needed help to describe and talk about it. Since then he has talked me through it a number of times and has even told me things like "your throat HAS to hurt" during the whooping cough mess. He was the first to suggest endometriosis back when I first complained of the sx because he pointed out I may only now be able to acknowledge pain I've had a long time.
I still struggle to complain about pain to most doctors, but I do ok with him. This week has included several conversations about pain, Dr. Body finding another pain med for me that I haven't gotten the script yet (please God tomorrow's mail) and after I had a really hard time calling my (wonderfully kind and understanding) gynecologist to let her know how much worse the pain is now and as I realized that if the pain intensifies too much I will not make it through these last few days of working. So today I had called her. I also had asked Dr. Body about what levels of pain are reasonable reasons to miss work (I can assume he thinks I'm there as he pretty much offered as many work excuses and pain med scripts as I want/need to get me through this. He's always taken a proactive approach to pain with me; since I can't take normal pain meds he has made sure I had what I can take available, even though it is narcotics.) I think I want to hear that I am justified in just feeling this hurts and there are limits to what I can do because of the pain. So I have a response. Except his server is down and so I can't get into the clinic's web page to access the answer. So even more than I already was, I am getting a nice lesson in patience.
Now I believe I have been patient enough........
Wednesday, August 03, 2011
Thank you
Thanks to everyone who let me know that the posts are going through. Thanks also for kind comments and for nobody pointing out that a blog that says the same thing daily and that thing is related to pain, not feeling good, etc. is not going to be a very interesting blog.
The good news is that Dr. Body is willing to give me a stronger pain killer. Unfortunately it's strong enough that I have to either get the script from his office or have it mailed to me so I won't likely have it for a few more days unless I get really lucky with getting up there tomorrow (doubtful). But, this weekend for sure I've got a chance at some painfree time. Which is very exciting.
The other good news is I made it through another day. And that may not seem like much but trust me, it is. 9 more days of work. If I make it that long and today gave me some hope on that regard. Partly it's the new pain med because vicodin has become essentially useless, but mainly it's that today was rough and I still made it. I have some paperwork to finish in the morning but not a ton and that alone says a lot.
Tomorrow is more work with Dr. Mind on panic. Since yesterday I realized the strong correlation between pain and panic I guess we start there. It seems backwards because in the past pain has been ignored far too long and now pain is overwhelming me. I guess though that this is significant; this is the first time that I've been able to appropriately admit to having pain, ask for help in managing it, and try to handle it appropriately instead of either ignoring it totally or understating things so nobody understood what I truly felt.
Next I have to deal with the concern that they'll find nothing. How embarrassing to complain so much and have nothing visible. Endometriosis can be invisible until biopsy, and truthfully I can't imagine there isn't something seriously painful going on with my right ovary. The same pain has gone on too long to not believe that. But I'll always doubt myself and as of now all I KNOW I have is a small polyp that may be more (fibroid), pain, and heavy bleeding. All signs point to SOMETHING being wrong but if I come out and keep having my right oary stabbed I don't know if I'll ever survive. This is why I can't wait for pre-op so I can tell her all of this and see what she anticipates. I keep thinking of pictures I've seen with an ovary encased in endometrial tissue and suspect that's the same here. But I'm basing THAT oh so knowledgable statement on the fact that when an area often affected by endo. is touched in an exam it hurts me a lot which is a sign of endo.
Anyway, in other good news I only need 2 doses of chicken pox shots and I'll have normal adult immunity. Yay. Chicken pox shot one is scheduled for about a week after surgery, a day that is going to wear me out totally as I have 3 appointmets with small gaps between each. I'm very tempted to try to get a motel room; we'll see how I feel then.
And as per so often I'm falling asleep typing so should stop before I tell something far too private or something. And I need to heat up my stomach warmer.
The good news is that Dr. Body is willing to give me a stronger pain killer. Unfortunately it's strong enough that I have to either get the script from his office or have it mailed to me so I won't likely have it for a few more days unless I get really lucky with getting up there tomorrow (doubtful). But, this weekend for sure I've got a chance at some painfree time. Which is very exciting.
The other good news is I made it through another day. And that may not seem like much but trust me, it is. 9 more days of work. If I make it that long and today gave me some hope on that regard. Partly it's the new pain med because vicodin has become essentially useless, but mainly it's that today was rough and I still made it. I have some paperwork to finish in the morning but not a ton and that alone says a lot.
Tomorrow is more work with Dr. Mind on panic. Since yesterday I realized the strong correlation between pain and panic I guess we start there. It seems backwards because in the past pain has been ignored far too long and now pain is overwhelming me. I guess though that this is significant; this is the first time that I've been able to appropriately admit to having pain, ask for help in managing it, and try to handle it appropriately instead of either ignoring it totally or understating things so nobody understood what I truly felt.
Next I have to deal with the concern that they'll find nothing. How embarrassing to complain so much and have nothing visible. Endometriosis can be invisible until biopsy, and truthfully I can't imagine there isn't something seriously painful going on with my right ovary. The same pain has gone on too long to not believe that. But I'll always doubt myself and as of now all I KNOW I have is a small polyp that may be more (fibroid), pain, and heavy bleeding. All signs point to SOMETHING being wrong but if I come out and keep having my right oary stabbed I don't know if I'll ever survive. This is why I can't wait for pre-op so I can tell her all of this and see what she anticipates. I keep thinking of pictures I've seen with an ovary encased in endometrial tissue and suspect that's the same here. But I'm basing THAT oh so knowledgable statement on the fact that when an area often affected by endo. is touched in an exam it hurts me a lot which is a sign of endo.
Anyway, in other good news I only need 2 doses of chicken pox shots and I'll have normal adult immunity. Yay. Chicken pox shot one is scheduled for about a week after surgery, a day that is going to wear me out totally as I have 3 appointmets with small gaps between each. I'm very tempted to try to get a motel room; we'll see how I feel then.
And as per so often I'm falling asleep typing so should stop before I tell something far too private or something. And I need to heat up my stomach warmer.
Tuesday, August 02, 2011
Truth
I don't know how to write this post. I don't want to seem like I'm trying to make you all say things you don't mean or want to say, and I know this time of year is nuts for many people. And I'm whiny and focused on one non-interesting thing and therefore not very interesting.
But are you all out there? This blog hasn't been so quiet in years. If I'm being totally obnoxious and need to shut up, please say so (nicely). I do not want to antagonize all of you and if I am, well this is your place too in a sense and I have no desire to come out of surgery and find no readers.
I'm concerned that somehow this is not going through feeds or something since the design update. I think it has seriously been nearly a week since I got a comment and that's extremely odd.
I also do not want to make people feel they have to comment. One thing I committed to when I started writing was that I would allow people as much anonymity as I wanted then, even if that meant that they were lurkers forever. I want that to still be true, but mainly I want to make sure that when hit post things actually are posting.
So:
1) no pressure
2) no apologies
3)are you getting this?
Thank you.
But are you all out there? This blog hasn't been so quiet in years. If I'm being totally obnoxious and need to shut up, please say so (nicely). I do not want to antagonize all of you and if I am, well this is your place too in a sense and I have no desire to come out of surgery and find no readers.
I'm concerned that somehow this is not going through feeds or something since the design update. I think it has seriously been nearly a week since I got a comment and that's extremely odd.
I also do not want to make people feel they have to comment. One thing I committed to when I started writing was that I would allow people as much anonymity as I wanted then, even if that meant that they were lurkers forever. I want that to still be true, but mainly I want to make sure that when hit post things actually are posting.
So:
1) no pressure
2) no apologies
3)are you getting this?
Thank you.
What Still makes me smile
Today has been.....rough. I found out that in all ways I'm borderline anemic, enough to show that the blood loss has taken a toll, just enough over the line to show that the diligent multi-vitamin with iron consumption (since I don't eat a lot of it) has been useful. There's nothing that can be done to help it. I've also established that my pain no longer is tamed by vicodin, yet I don't have other options. Dr. Body is looking I think but the only things I know of that are left are quite strong. This makes me wonder how I'm going to survive 2 more weeks of working with working getting harder constantly. I could ask to stop work now. The thing is that psychiatrically 3 weeks of laying around being in pain is not likely to do me a lot of good and would probably just increase my already frightening anxiety levels.
But I keep remembering Dr. Mind telling me yesterday that I should remember that I'm still smiling easily and that this is a big thing. He pointed out that he got me to smile without trying twice. But today what makes me smile is what those two smiles were about. Ready? One, predictably, was my niece. Two, not quite as predictably was my worms. Odd, yes. But at this point, whatever works.
But I keep remembering Dr. Mind telling me yesterday that I should remember that I'm still smiling easily and that this is a big thing. He pointed out that he got me to smile without trying twice. But today what makes me smile is what those two smiles were about. Ready? One, predictably, was my niece. Two, not quite as predictably was my worms. Odd, yes. But at this point, whatever works.
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