I don't know the whole story and I'm not going to try to share it because leaving out parts can make it seem even worse than it is, but after months of not feeling good and test results that didn't make sense but ultimately were declared "nothing" my mom's good friend/unofficial member of our family had a scan today that detected results the prior scans didn't. An appointment was made for him at one of the top specialists in oncology of the specific organ that is involved for Thursday. She'll be taking him; at least she's getting good at finding the hospital. But it looks to potentially be very serious and I am afraid.
Wednesday, June 25, 2014
Friday, June 20, 2014
Just Me Jen
2 more weeks and then I'll find out if I can be up a little more. I think they're going to want me to stay down as much as possible for the entire time I'm nonweightbearing from the way it was said yesterday. I'll take that 2 weeks at a time though.
Anyway, just wanted to say I am still here, still in bed. Tomorrow I'm going to try showering I think. I can't wait for that. Mostly I just lay in bed and try to make sue I'm low enough in bed that my foot is way up. That's much easier with the cast as is nearly anything. There's not a lot to share as not much is going on in my life right now. I sleep a lot. Today I've been quite itchy from the pain meds. My cat is snoring loudly; that's tonight's biggest news as I don't know how to stop him without jabbing him with my cast which seems mean.
Anne came over to visit and watch a movie today. She was really sweet and really careful with me. Such a sweetie. Her sister was here too and gave her very first hug ever to her big sister who was thrilled. The baby is a little beyond my abilities right now but I did get to hold her for a minute. She crawls at the speed of light and pulls up on everything so she requires someone who can move quickly all the time. Anne asked me questions about my brother today, which is expected. When I admitted I couldn't explain it partly because I don't understand she told me that she thought grown-ups understood everything. No, 'fraid not sweet one....and especially not this.
Still here, still laying around. I saw the dr. Wednesday and got the Bigfoot cast off and a more normal cast applied. The effects of following the bedrest/elevation orders are immediately obvious as there is almost no swelling or bruising. The incision is pretty big and I'll have quite a scar but who cares? It beats being braced and certainly beats repeated injuy. The dr. seemed pleased. I liked him this time. It appears he likes to do surgery. He doesn't like to talk about a theoretical surgery but he'll happily discuss once he got to cut. They did a lot of clean-up in there, tightened ligaments and tendons and sewed it all back up. He said 8 weeks until I can start putting weight down. That's better than 12 which is what he told my mom Friday. I'm in my first cast now and that comes off in 2 weeks for stitches to come out and then I get another one.I can see now why he does things differently. Usually the bigfoot dressing is on 2-2.5 weeks and then is removed, stitches are removed and the cast is put on for the rest of the time. My doctor is more tightly controlling how much movement I get by never letting a cast get looser from decreased swelling. The cast is even done differently than a usual ankle cast. It goes completely over my toes, which has made doing stairs really hard and scary (I call it my flipper) and it is contoured so that there is an arch to my foot and around the foot it is form-fitting. It is much bigger in the ankle where I have a lot more padding over the incisions (2 on top of my foot and the big one on the outside of my ankle) and then I have additional padding on my heel because I have 2 stage I pressure sores there. I apparently was propping my heel on things and didn't know it because you can't feel it through the Bigfoot thing (or the flipper either) and so I have to be careful about that now too.
Tuesday, June 17, 2014
Yawning, maybe going to sleep.....
Hopefully tomorrow will be better. Actually it will be because we are washing my hair and that is a BIG DEAL since it hasn't been washed since Thursday and it is gross and long and sweaty and in a bun on top of my head to keep it out of my face. I usually shower and wash my hair before bed and that's a big part of my routine so between that and hating to sleep on my back falling asleep at night has been tricky. I miss the hospital bed where I could achieve real comfort for sleeping. Don't miss the rest of the hospital but that part I do miss. I can sit on my couch but not really easily so we've decided to make that an experience for after my real cast goes on Wednesday.
You'd think at least one of those would be something I knew............(To be fair I've had a lot of things in my body and forgetting a dose of routine meds isn't surprising since I also forget seemingly everything else. I'm making my poor squeamish mother go into the doctor with me Wednesday so that she can remember things. I just promised she doesn't have to look at the incision or anything else.)
Today I had a really upset stomach and lots of bathroom trips. I didn't eat much and just felt lousy. I also was wide awake since 7:30 AM. Part of this was because my nerve block shifted and started working far too well so that my entire foot went numb until I called the pain center and turned it off. They said I could put it on again if I needed to but I have been ok and it was coming out tomorrow anyway if all went well. So I guess that is one thing taken care of. But if just was a rough day and I thought it was the pain medicine. Until I got my pill box and discovered I didn't take my meds last night. So I was in benzo withdrawl and probably fine otherwise. (I just feel gross because I haven't been able to shower since Thursday and sponge baths are only so good, but it adds to feeling sick I think. Plus I'm hot then cold then hot again despite having the air conditioning at freezer temperatures. I'm assuming this is from anesthesia but it's annoying.Anyway, lessons learned: nerve block wasn't doing as much as I thought although it was amazing the first day and a half; I hate having a numb foot; sometimes my ankle wants to be elevated much farther over my head than is required and that is to be obeyed at all times; take your sedatives and addictive meds daily.
Sunday, June 15, 2014
Otherwise I spent the entire day sleeping and so have very little to report. I did a sponge bath and had to have my mom help me put underwear on. Nothing fun about that.......
I have nothing really to say. I slept through a pain med time last night and so spent part of the day catching up on the pain. Thank God for the nerve block pump, even if it is annoying to be attached to something all the time. (There is a catheter similar to an IV in the back of my knee with all kinds of stuff covering it. There is a tube that goes from the port on the catheter to a bag the size of a small purse that holds a bag that started with a liter of anesthetic. This automatically gives me a dose every minute or two and has a button I can press to get an extra, bigger dose. 10 minutes after the extra doses is when I feel best but I can only do one every 70 minutes and it looks like I can't do it every 70 minutes without running out of solution before the pump comes out on Wednesday. It's annoying because I easily forget that I have a long line coming out of my leg but it helps a lot. I'll miss it when it is gone. Which I'm sure my doctor will be very happy about since he won the argument about having this at all. I wish I could keep it another week or so.).Here is a picture of my current dressing/cast (really casts; there are plaster casts and fiberglass (normal) casts both under there. At the widest it is about 10 inches across. I've been good enough at keeping it up that my toes are now way down far below that cotton at the top because gravity has my heel further down in the cast.
Saturday, June 14, 2014
It was a very positive experience with nurses who were great advocates for pain management and I am so glad it is over. (OK, so the first part is over.) And now I am sleepy so I'll take my pain pill and see what I can do.)
I am home from surgery. I'll tell more later because I'm getting sleepy and it's time for meds but it went really well. The things that were damaged were fixed and the ortho told my mom that I will have a great prognosis as long as I am good with following the instructions. So 2 days of laying in bed are done, 3.5 more to go and then I'll only be in bed 23 hours per day or something like that. I did wind up with the nerve blocks (3 in total; 2 for surgery and one of those was supposed to be left in for 5 days but it quit working this morning so that my pain went from 4 to 8-9 in about 5 minutes (the first number was from before I tried to move) so I got another one today that has me totally numb. I know there is space in my cast to move a little but I can't wiggle my toes yet, much less move my foot or ankle. This seems to be starting to wear off a bit but I don't know how strong the block will remain until it comes out Wednesday (or sooner if i choose). I have made it to the bathroom alone once which was great (it takes some extra effort because not only am I non-weightbearing but I have this bag a bit larger than a clutch purse that contains my nerve block pump and it goes where I go.So now begins 12 weeks of non-weightbearing and then I will start therapy and learn to walk without external support again.
Wednesday, June 11, 2014
Time to eat. Must eat. Much to do yet tonight.
I feel like something profound belongs here but I'm out of profound. I'm just working my way down a checklist I made and I actually abandoned making a soup to write this and try to figure out a supper. I think it will be a frozen dinner. Easy, filling, different and I can replace it when I need to. My mom keeps telling me to not worry so much about having food stockpiled but I don't want her to have to constantly need to take care of me and to have to work around my dietary restrictions which really change her own diet. Waffles. That is what I need. Waffles and milk. I think I even have some safe sausage. (It doesn't taste very good but it is safe).
I am now so nervous that all I've eaten today was a granola bar at 7 AM. I have to find something to eat and nothing sounds good at all. Tomorrow night I'll be starving about 12:15 AM so I need to eat now and try to remind myself then that I ate plenty today, but I just can't figure out what I want. Oddly I really don't feel anxious beyond what I've been feeling but I think the stress of my cat's illness combined with this has left me not hungry at all.I did have some success with the cat. She is very happy to have a litter pan upstairs. I'm not, but hopefully it is temporary. She is still vomiting and yesterday the vet said the med for that had to be given orally or in a shot. I suddenly remembered today being told that it could be given transdermally (the med goes on the skin inside her ear) and called them after I found a place that sells it that way. Sure enough they can get it and so next week she'll have something to help when she feels sick. This is certain to ensure that she doesn't vomit again for a year, but I really want her to have a good break from feeling sick. She has been a little less lethargic today and has wanted cuddled a bit which is good. I'm coming to terms that I have to accept that she won't be here forever. Which is just hard to consider given that she made it 19 years so far. After she got that old I somehow stopped thinking she'd ever be gone. In contrast I got my other cat and another that died when she was 7 because I knew cats don't live THAT long very often and I wanted to have established pets if she did die. Now she's almost outlived that age by twice the factor so that joke is on me. But I know that first we have to stop the vomiting so she stops losing weight. Time to break out baby food and possibly my own homemade kitty tempting but disgusting chicken livers and gravy puree that they love but is oh so very gross to make and smell.
Tuesday, June 10, 2014
That's it from here. Finding it so weird that I have 2.5 days of walking left and then I won't for months. I'll miss taking the puppy to the dog park. We've been going nearly every night and he has so much fun. I don't think the lake and my cast will be friends though.
I should take a shower, I'd probably relax but I'm too tired to want to stand up. Lazy, yes, but true. I'll do that tomorrow.
I promised myself that I wouldn't do anything tonight but rest. I'm having a really hard time sticking to that. I probably should just take some valium and go to sleep. It would be easier if it were less scented in here. Oh well, the hope is that when she feels better she'll not need the extra litter pan anymore and if she does I'll just have to find a litter that works for both of us. This sounds good but may be a little too scented. I didn't realize it was scented when I bought it.
Big news on the niece front. Geraldine is starting to say "Get ____". The other night she said "Get (name she uses for Anne)." when she woke up and wanted to play (she's been sick and fell asleep early and then woke up very early.) She said Aunt Jen again when I saw her the other day, as well as Jen, Jen, Jen.
I feel like there is so much to do and so little time left to do it. The girls will be here Thursday so tomorrow is when most things must be done. Mostly it is small stuff but it still takes time.
I have been doing so much trying to be ready for surgery. I know that if things are out of place it will irritate me endlessly so I'm trying to finish. Today we loaded all the moving boxes up and took them to recycling and finished unpacking the garage things (the last boxes). I still need some shelving units though but I should be able to park in my garage now.However I am tired and keep getting migraines because I had to stop the magnesium that I take for prevention. To top it off my old cat (age 19) has suddenly been peeing outside the litter box. I took her in for what I thought was a UTI today and while it is a UTI it is mostly kidney failure. That diagnosis has come and gone repeatedly but this time it will stay. It's not that advanced but is enough that it isn't just a transient dehydration. So we had labs done and prayed her was a treatable thyroid problem but it wasn't. I can't afford kidney food for her and don't really want to take away the food she loves anyway. I set up a litter box in my bedroom with that litter that swears that it clumps into a completely non-smelly ball for 7 days. Either I haven't found pee that was already on the floor, the new stuff smells like pee or it doesn't cover any odor because my bedroom (where the littler is) smells like pee. I think I probably just haven't found some pee yet but I also don't like the smell of the litter. I want the pan there because it is where she mostly pees but not if it is going to smell. I have no idea where else it can go though. That's the problem with a tiny apartment. Anyway, I cried at the vet's and for quite a while afterward. When the cat is 19 you know you don't have forever with her. And in fact the average cat with her level of kidney failure lives about 2 years. If she lives 2 years she'll be extremely old. So it's not like this really changes anything, I just hate that she doesn't feel good. When the antibiotics kick in she will feel better again. I hope. Usually she only has about 10 really active moments per day so this is hard to see but she is lethargic and that's sad.
Anyway, more tomorrow I'm sure.
This video is really neat because of the level of dysfunction he shows when it is clearly not his baseline.Oddly it also made me realize how much more I used to hear voices than I knew. I still do sometimes and I have to be careful not to talk back to them in public but watching him I kept thinking "but the worst part is that you get USED to it". Which is horrible to think about because he struggles so much with simple tasks.
I'm glad they did this. It wasn't really a schizophrenia simulation as they stated as it only really dealt with one symptom but it was still interesting.
Monday, June 09, 2014
Oh well. At least I feel right about one thing.
Now I just have to survive this week. I have a cat with a probably UTI so I need to figure out how to get her to the vet as well as seeing Dr. Mind and doing a bunch of errands tomorrow (probably this is called seeing the vet Tuesday which is too bad since the cat is not making it to the litter box and I don't think she feels great although she's not in acute distress) and I have all these things to do and yet I am wanting to sleep many hours per day. That's so rare that it is hard to not indulge it completely.
Chances are good they'll believe me. We go to great lengths to establish that I'm a psych patient without stability and that I can easily be thrown off course by seemingly harmless meds and that it is best to stick to what is known. A psych consult has already been recommended so that nobody messes with my meds. Psych has been in touch with Dr. No Bedside Manner several times and I let them know about the nerve block dilemma and they declined to weigh in. (I believe their point was supposed to be that it was anesthesia's call period, not mine at all, but that's just not true. My body, my decision. And I think that at least the anesthesiologist that I want would back that decision.)
I am used to being pushy about my interactions or allergies. I'm not used to being pushy about something I don't know a ton about. But I feel peaceful about this and I didn't until I decided. As I said I may change my mind completely. I'm not sure what the anesthesiologist would have to say to get me to change my mind but I'm not going in with a closed mind, just the opinion that I will change my mind only if I feel that is the correct decision when laid against all the reasons I'm opposed. I won't have those with me which is too bad (I'll be far enough back to surgery that I won't be allowed to have anything including my glasses), but I think I can remember the main arguments.
I have decided that I will talk to the anesthesiologist about the anesthesia-only nerve block but I do not intend to get one. If he (I hope it is he as I want a specific doctor) is completely convincing then I'll reconsider but the reality is that I know my body better than they do and I know that if I would do this and become agitated I would not forgive myself for the absolute misery I would endure. I feel much more at peace with the idea of dealing with more pain. And really that pain will only be worse for a few days. The nerve block was only for 3-5 days at best. I keep thinking that I often get agitated when I have dental work done and I'm fairly sure that it is a great deal less medication to numb part of your mouth than it is to numb your entire leg from the knee down. My preference is to repeat what was done with my hysterectomy and to have a morphine pump and wean off that over a couple days. I don't know if my preference will matter there, but that worked extremely well for me and it's always good to go with what we know is good. I also question what benefit numbing my leg has when the purpose of the traditional nerve block is to decrease swelling and bleeding, which won't be affected by this other thing.I see all these ways doctors may be unhappy. They are going to feel like I did my own "google education". This isn't true, they told me the name of the drug and I looked it up. Based on what the profile says I'm not comfortable. And while my reasons probably will sound extreme to them they've probably not recovered surgery much more minor than this while not sleeping, not eating and not being able to sit still, at all, ever, no matter how much medication is given.
Thursday, June 05, 2014
Otherwise I just need to sleep and worry about cleaning the kitchen and putting the rest of the groceries in the basement pantry tomorrow. In fact it is after med time I guess. Time got away from me. Oops. And I had so much more to do today....Good thing tomorrow has no plans.
I am so annoyed with someone that it is nearly positive that I'm exhausted. (Dr. Mind, groceries, unloading MANY groceries, making a soup to freeze, puppy to lake to play but cut short by ill-mannered pet owner and dog who jumped on our puppy and held him under water so we took a walk and left, ball with puppy, putting away 20 tons of groceries, etc). And I've been sleeping a lot lately and didn't today so that probably adds to it.In trying to make a decision about the nerve block thing (90% sure no but still gathering data and can't make a final decision until in the OR) I posted on facebook that if any of my nurse friends have experience with peripheral nerve blocks through working in OR, recovery or ortho could they please contact me. I really hoped for a professional. Instead my cousin posted and so now people are less likely to see it and think "Oh Jen hasn't had a response, maybe I can help" and believe me, at this point I'm way past wondering what other people experienced. I mean, I care, but my issue is very different than other people have going into this so most people aren't going to have experiences that provide any help to me at this point because most people don't get as easily thrown off course by meds as I do.
I have a cousin who tends toward self-importance. One of those people it can be hard to be friends with on facebook because whatever you post he will try to top it.
I have a cousin who tends toward self-importance. One of those people it can be hard to be friends with on facebook because whatever you post he will try to top it.
I am supposed to talk to the anesthesiologist on the day of surgery and decide. But I need to have made my mind up fairly well on the agitation component beforehand. I'm leaning toward not risking it and dealing with the pain. Which terrifies me as I think it will be pretty substantial. So I'm asking everyone I know, what would you do?
The problem is that I looked it up and it has a 1-5% chance of agitation being a side effect. That's tiny, except that I'm very sensitive to agitation. I've already had akathesia twice from meds that don't often cause it and because of having it twice I'm more at risk from now on. I also am just more likely to be agitated from anything than most people. But 1-5% is so small. And it probably means the difference between overnight and several days in the hospital. On the other hand I've heard people say nerve blocks can be very uncomfortable while wearing off and not that effective overall.
My surgeon uses nerve blocks to decrease pain and allow more rapid discharge from the hospital after surgery. Usually he uses one with a steroid and epinephrine which decrease inflammation and bleeding. I am refusing those because of the strong chance it would cause agitation during a period that I am to be laying still for 2 weeks. Anesthesia agreed with this. They did tell me that this means I will have more pain, which I knew. And they offered me another kind of nerve block that is just an anesthesia and so is much safer for me.
This is a 2nd post in a few hours so be sure to scroll down.Here's my dilemma:
Wednesday, June 04, 2014
I think my castle mostly broke apart and washed away in the last 8 weeks. But just like my niece's sandcastle just enough remained that life is still recognizable despite being terribly battered. It will never be the same. It's going to be hit by another tide eventually. But something survived and for a while I really did not think that was going to happen.
Watching her I realized that what she was doing was pretty much just showing us what we have to do in life. It gets hard to hold it together and all we can do is throw on patches to keep it together the best we can. That's certainly been the theme of the last 2 months. I have lived through some very bad times in my life and I've been hurt badly by them. The events of the last 2 months though have shaken me greatly because someone who I trusted, something that takes so much to earn, did one of the worst possible things that can be done in my experience/view of life. And so instead of living most of that time has been spent simply throwing sand at the castle and hoping it would stick.
I am actually doing pretty well right now. The awful pain from after my brother was arrested has changed to just an ache and sorrow, knowing that at some point the next step (being arrested and charged with whatever he is really charged with) will come and bring new waves of pain, but for right now it is the same as it was 2 months ago when this started and I can live with it. Trying to make myself see him as a human instead of a monster has been really helpful. What he is accused of remains monsterous but he is still a human. I think it is likely that this will be what is hardest to cope with throughout the entire process. Other things are stressful, like surgery (gulp), but I'm doing fine and actually have been sleeping many hours per day. I don't think it is depression, I think it is my body recovering. I'm even off of the valium.At the beach last week my older niece built a sand castle. Unfortunately high tide began to come in and threatened her masterpiece. For a while it was held by a moat her father dug around it but eventually it began to crumble. And so I watched that little girl run and grab handfuls of sand, one after another and throw them on her castle, working as hard as she could to patch it up and keep it together. She actually was quite successful and the castle held up to the tide for quite a while.
Monday, June 02, 2014
Anyway, hope tomorrow goes well............
More later. I learned a few life lessons on this trip and I'll share them when I get through this week (pre-op/Dr. Mind; dentist; Dr. Mind; trying to get the house ready for surgery) but mostly I'll just say that I had a great time and am much more relaxed.
What I will say about vacation is that there is one moment that I am carrying with me as one of the best moments of my life. My baby niece is now 9 months old and is saying 10 or 12 words consistently. One night I walked onto the screened porch where my sister was rocking her. A little voice said "Aunt Jen". We all looked for Anne, thinking she'd gotten out of bed. Nope. The baby's first phrase was me. She's not repeated it, but she has said Jen a number of times more. It was so special.
I have about 3 posts brewing and honestly I just haven't gotten turned back on from vacation. I had internet but had a hard time with low speeds so I just didn't use it much. I needed that kind of break from it. The internet becomes too much sometimes. It was wonderful but the last day we drove home which was something like 14 hours in a car, mostly at night which was great for the kids but I got only a few hours of sleep and then I got home and could not sleep so I was awake for most of 38 hours. I then slept most of Sunday then had a migraine so I was knocked out by the meds for that and slept another 10 hours or so. Then I drove to Cleveland and after being lost saw Dr. Brain then got lost again (and you have no idea how stupid this was; I was lost for an hour before it occurred to me that I was not going to the right block of the street I was on). Then I ate supper and napped. Tomorrow morning is pre-op and then I see Dr. Mind in the evening. So I am just getting back into life very slowly because my routines aren't worked out yet. Which is fine, but I just haven't felt like doing much, blogging included. I took a break from nearly everyting online while away and it was good.For now I am worrying about one part of tomorrow. I am supposed to have a nerve block for pain control after my surgery. From what I've read nerve blocks contain epinephrine and a steroid. Epinephrine interacts with Emsam in a way that mostly can be controlled in an OR setting (blood pressure stuff) but it also can cause agitation. Steroids ALWAYS agitate me. Since recovery is rather dependent on my ability to sit very still for several weeks and have limited mobility for a long time I am not willing to take that risk. So unless they can promise me a nerve block without either of those things I'm refusing it. Frankly I've read some things that sound like it can sometimes be pretty unpleasant anyway (sometimes it is great, sometimes it is pretty uncomfortable as sensation returns). I'm used to working with my doctors. This isn't the same type of relationship (this is a random anesthesiology resident/anesthesiologist and due to some kind of confusion I'm not yet set up as an MAOI anesthesiology patient). A week gives them enough time, but I'm just going to be a little bit of a surprise probably tomorrow and then I'm going to refuse a treatment recommendation from a surgeon I have no relationship with at all. I suspect he will be frustrated and annoyed by this. I don't care what he thinks; I know what these meds can do and I know what it feels like to be mobile post-op and unable to rest or sit still no matter what doses of extremely strong meds are given (I was at one point on 1200 or 1500 mg of Seroquel and 10 mg of Zyprexa plus generous helpings of Klonopin, atarax (like benadryl), and I believe benadryl and I think something else. HUGE amounts of sedatives and nothing could stop me from pacing constantly. This time I have to be reclined with my foot in the air for 2 weeks all the time and then gradually decrease that. If I am agitated it will be absolute torture. So I am not allowing that risk to be taken. But it is very intimidating to do this. I don't mind telling my usual drs. that I am uncomfortable with some treatment or another but strangers and this weird surgeon concern me. But they'll just have to use pain meds to reduce my pain and I will avoid the psych unit while immobilized.