Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Saturday, July 30, 2011

What not to wear/or, uh, say

So I'm training my new assistant.  THis is going pretty well really and I believe it will work out.  (Please, please God).

I've told her more specifics than most people at work about why I'm about to be off. This is partly just chance, partly because it's complicated, partly b/c it's personal, and partly to avoid the laughing, newly pregnant after trying person's laughing "well, just get pregnant and you won't have periods".  Since I can't anyway and am facing a diagnosis that probably would cause infertility (and post-op literally would be my last chance to get pregnant except I've getting an IUD so I won't be getting pregnant even if it were an good idea for me), I don't want to have the conversation. Plus I'm having so many things done at once that explaining takes time.   

But anyway, after learning I'm having a cystoscopy she told me in detail how painful she found it and how hard it was to pee afterwards.  Now in my case that's not going to matter because I'm going to have a catheter in for the remainder of surgery (I assume, I think it's standard with a general and I think it was included as something to expect in the training video from the hospital for the part of the procedure I was educated on, which was the hysteroscopy with possible D&C.  So I assume that I'll have the cystoscopy quickly, be catherized and cleaned up, have the hysteroscopy with or without D&C, be cleaned up then have the Mirena inserted, then cleaned and diapered or something since by then I'm likely to be bleeding from whatever is done to get the thing out of my uterus, then they'll do whatever they need to do to prep for the scope, and what happens during it depends on what they find.  It's now occurred to me that for minor procedures this is going to be a busy procedure with a lot of people staring at my um, bathing suit region.  Because there will be 2 surgeons, at least one nurse who is going to essential have to prep me several times while I'm already out, I suspect more than one anesthesiologist given the protocol I'm on, probably a respiratory therapist to manage asthma issues coming out of anesthesia, and possibly someone who is there just to coordinate and make sure that the protocol is followed to the letter.  That's the impression I have, that someone will be closely monitoring every moment of my hospital stay for safety.  Which is good since my mother won't be able to.

I know my recovery will be way different than just having one test done.  I also know that I'm going to be on a lot more pain management and much more drugged and may not even have to try to pee for a while after surgery.  But never, ever tell someone that any part of their complex surgery that they believe is one of the minor parts is really painful........It of course doesn't help that I am dealing with sexual abuse trauma that she doesn't know about, I still couldn't benefit from that knowledge.  It is one more thing to ask about during pre-op.....

Bipolar soup

You know how in the winter you make soup that you kind of throw everything in the pot and cook?  I hope?  Just me (ha, pun, surprise)?

Anyway, that's what things are like right now.  I am severely anxious.  That much is certain.  I am also exhausted, physically not well, and I feel depressed.  Yet today I had some quiet time to think (of the 4.5 whole hours I made it between really getting up for the day and going back to bed because I'm more comfortable here?

With bipolar, even with mixed episodes, I'm pretty good at knowing what is going on.  I'm learning, with asthma, to do the same.  I can't predict good and bad days at all with asthma but when one starts I know how to react.  Which really is true with bipolar, although with it sometimes I can guess ahead what is coming.  But right now?  I am like that soup.  I am so tired.  Could be depression, could be physical.  I cry.  At anything.  Yet I don't cry like I am depressed; I just find tears running down my face.  I sleep like crazy, but I don't feel well and the most comfortable position puts me laying down which adds to the sleepiness.

Today I got to spend a wonderful 2 hours outside on my mother's deck.  Because I can't be in the heat I have only had a few times I've been outside for more than 5 minutes in the last few months.  It feels so good and I found a way to sit comfortably enough in a deck chair.  That was a wonderful thing.  Yet sitting wears me out.  I came in to bed about 8:45 and am still awake mainly because I haven't taken my pills yet because the work best if I take them precisely at the same time daily.  I was so lazy today that I didn't drive up to feed my own cats; I left them a lot of food yesterday but b/c the one cat eats so much I did intend to go up.  But I didn't actually feel like it, so I didn't.

I remember back in the first week of November my washer or dryer broke.  I simply went the extra 30 minutes to the store after work and bought a new one.  About 3 days later I had whooping cough.  I am truly amazed now that I could do such a simple thing; now going to the store for anything practically requires a day off work to rest first.

My brain says depression.  My logic says "sick, anxious, depression not so bad".  Dr. Mind will agree.  He also will be very big on anti-anxiety activities that I don't CARE about because well, depression.  See the weirdness?  And now I've sat too long in the wrong position and it's time to lay back down.  I hate my right ovary.  There's a sentence I never thought I'd say.

At least I have good doctors

I have made little secret of late that my "speciality" treatments-psychiatry and gynecology- and my gynecological surgery is all at Cleveland Clinic.  I used to keep this secret as it opens up the possibility of figuring out who at least some of my doctors are, but whatever.  They do a good job and if you need referrals for these specialities in Ohio I'm happy to give them.

I'm also really happy that they have just announced that in the big listing of the best hospitals Cleveland Clinic is #4 overall, and that BOTH of my specialities, meaning numerous doctors who have treated me or been involved in my care (there have been various psychiatrists consulted as well as several treating me in the hospital) are in the top 20 in the nation.  Gynecology, in fact, is #4 nationally.  This makes me feel good about the surgeons who are about to be all over my internal organs in just a few more weeks.  And, if the deepest fear, the one I've mentioned to nobody, plays out and they find something horrible, (which they won't, but the doctor told me that I HAD to have biopsies by fall, and I watched my grandmother die of ovarian cancer so fear is there), then oncology is rated I think #1.

Dr. Body is elsewhere, as is Dr. Asthma and Dr. Mind, but they are also, absolutely, definitely, #1.

Having gone a grad school rated in the top 20 OT schools the year I went and then fell drastically while I was there I don't necessarily buy the number thing, but I also know without a doubt that these doctors are amazing and it's good to see that recognized.

And to keep remembering that they definetely do know their way around in there........

Friday, July 29, 2011

Two more weeks

I have 2 weeks of work (and one day) and then will be off until I'm recovered.  It's so hard to have no concept what that will take.  I realized today that since the pulmnologist was concerned about how my vocal cords will tolerate being intubated that he may want to see said vocal cords sooner than 2 months post-op.  I called and the receptionist got things all confused with something about a surgical release which he isn't worried about so it took like 4 phone calls to straighten out that oh, yeah, checking me soon after surgery may not be a bad idea.  Now if I can just get some kind of information about how he can get information to anesthesiology we may be organized.  The problem is that Cleveland Clinic's pulmonologists dismissed everything I said and actually refused to let me talk once they realized I was bipolar.  And that is what the doctors will want to rely on, which they need to know from someone who actually treats me, someone who has seem my test results, that I have signficant asthma and damaged vocal cords and need care to be taken, may need some extra help breathing for a while afterwards.  (ie lots of breathing treatments and oxygen). 

The thing is that although there is risk in taking days off pre-op in that I could become more anxious right now anxiety is murdering me and so I long for time with less stress and the only way to get that is not working.  I have made it 2 days without a panic attack but I've also cut off use of my asthma meds to the minimal to decrease stimulation from those as well as I've been taking lots of anxiety medication.  Neither is ideal.  Dr. Mind will be back and I'll see him Monday, and that is good.  I hope that he and more frequent visits for a couple weeks will help me calm down enough to be able to breathe and think simultaneously.  I'd forgotten what panic attacks feel like, and particulary had forgotten what severe ones are like since I'd not had one in about 15 years.  I don't think I've ever had one that severe with as minimal a trigger as the horrible one.

I know I had more to say.  I'm falling asleep though so more tomorrow I guess.

Thursday, July 28, 2011

New Design

About 6 months ago I started putting a small amount of money from each paycheck into a little account where I can buy things for myself without guilt. Because I had wanted rainbows on my blog for a very long time that was one of the first things I decided to do.  I've written before about how rainbows tend to appear precisely when I need them to and that they've come to have even greater meaning to me than the typical Christian relevance.

And so, after it has been up for several weeks and the designer is apparently not going to fix the last thing that she had agreed to put on but never did, I now present, my new design.  Along with the thing I wanted that I didn't get, I kind of went into this with an idea of what I wanted that I didn't find out was impossible per this designer's approach  until I saw it completed for the first time.  I think that I used someone who does designs for people who know more than I did going on and I learned a hard lesson about  not entering into an agreement until the specifics are agreed upon.  I actually plan to seek out someone to do what I wanted more, if that's possible, eventually,even though doing so is a total waste of money, because every time I look at this I am disappointed.  It's just not what I wanted and I had a lot of dreaming involved.  Because this is a hard time for me I've felt ignored and not listened to and also that my project was less important than others as it took a lot longer than I was told and then didn't have what I'd hoped for.

It has the main element, I think, and that is hope.  What is missing mainly,and I may try to tack it on although I think that violates my agreement and may cause me to have to take the whole design down BUT she told me she'd do this and after ignoring 2 emails asking her to do it I give up on that, is the following quote, which should be under the top graphic (if you're in a reader you need to click in just this once): "Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." . Genesis 9:13.

This is important to me because it is hope.  Simply put, I have randomly read through various entries from over the years and while it astounds me, my story truly has become one of hope.  I've become  pretty honest with myself about how ill I was even 3 years ago, am much more so 4 years ago when Seroquel came into my life.  And before that  I  lived a life of mostly misery because  of my illness and my past.  But now I pretty much have everything I could have hoped for and more when I was diagnosed, just about exactly 9 years ago, and more than I even knew was possible for several years before that when I was so incredibly ill and not being treated properly at all. Yet now I am pretty much about as well as could possibly be hoped for, minus my explosive pelvis. It's not like things are the same as they would be without this disorder but they are far from what I thought possible.  Dr. Mind always told me this could happen.  He finally admitted that he had no basis in reality for saying that but he thought there was hope.  Dr Brain has taken the same risks.  When we got to 3 meds left none of which were likely to work she admitted that, but she also tried those meds, then tried changes until we finally found the magic mixture.  Dr. Brain, by the way, tried things for 7 years to get that magic result, and even then if I'm having a bad time, like now, she's still with me 100%.  When I had the bad panic attack she called me within an hour of my message and talked to me for 20 minutes.  She also told me to email her if I needed to talk and know someone was listening while Dr. Mind was away, which I've done just to tell someone I was panicking and didn't like it.

I have rainbows because God has given me the right people in my life, and you all are among those.  I feel more love and support on this blog than from anyone in my life who isn't paid to support me, and each of you is a rainbow to me.

now to try to screw with the design......

Wednesday, July 27, 2011

Trend? I hope not

Last night I got frustrated about work and had a panic attack.  Today I got frustrated about EVERYTHING and had a panic attack.  Not as bad as last week but not good either, especially today's.  And of course being mostly over a panic attack at 6:50 AM isn't ideal.

I'm so very tired of stress and waiting for it to end, and well, just other things I can't really say here.

I need weekend.  Crazy weekend with dogsitting but running up here at least once to feed my cats.

I can't believe it is only Wed.  I have a horrendously busy day (3 hours of travel and 6 patients; I'm going to be the flying therapist today).

I just want to move on to 3 weeks from now when I'll be recovering rather than waiting.

Monday, July 25, 2011

Almost a week

It has been nearly a week now since my horrible panic attack.  It's amazing how shaken that left me; I have not had one on that level for many years.  In fact I can only remember about 3 that bad, ever.  When  I was first diagnosed with panic attacks it was very tentative for the simple reason that I don't even do panic attacks normally; instead it appeared I was having them in my sleep.  Nightmares had beyond reasonable reactions and eventually it occurred to Dr.Mind the first that these things sounded a lot like panic attacks.  It was a good thing he figured it out too as I endangering myself and others in my sleep.  My roommate and I had to move things so I couldn't grab anything accidentally and either pull it over on myself or throw it at her.  Even then we missed things;  there was once when she walked  in just in time to watch me panic and yank one of those clip lights that can be used a reading light where lamps won't fit right onto my head.  That hurt.   It also, rightfully, scared her to death since she couldn't stop it and knew it was going to scare me and hurt me.  Since then bed has been kept pretty safe and items that I could possibly harm myself with are shoved away before I go to sleep.  Even then I have thrown a cat out of bed (not harming any thankfully), or had one huge panic attack when one of them licked me while I was asleep and I meshed it into a nightmare.  It's funny, I know that I was in grad school and approximately what stage of grad school I was in when I had the last one as bad as this was but I remember nothing of the circumstances except that it was rather late at night and I needed a lot of calming from a friend (aka the former Dr. Mind the first; did I ever mention that I sort of never let go there?  Well, things changed, I should say.  Regardless Dr. Mind the 1st is why I knew the current Dr. Mind would be able to help me; they are very alike.  Very different in some ways, but very alike in important ways).

I will admit that although I know that the attack started as some insanely painful reaction to my niece turning one and many feelings I thought I had dealt with but instead had really shoved aside and decided weren't so important after the first time I held  her and knew that I'd love her with all my heart no matter the pain.  I then kind of decided no pain existed.  I've done this before and I suppose I'll do it again, but it certainly isn't the recommended course of action in coping skills.

I have a problem with letting go and crying.  Dr. Mind the first and I worked on this without much result.  Dr. Mind the current worked and worked at it for about 4 months and offers repeat seminars on the topic routinely and so now sometimes I can cry.  When I feel overwhelmed by too many emotions, which is kind of a major risk with bipolar disorder and rapid cycling, then I become incapable of crying until the right thing triggers it.  Usually it is a very gentle word as Dr. Mind has become pretty good at starting the tears when I desperately need to cry and can't.  Sometimes it takes a review of the "it's ok to cry"  lecture. Sometimes it is a matter of pointedly ignoring the first 15 tears and then suddenly I'm letting out all the painful stuff inside.  But it is not often that I can just simply cry.  That was one of the strangest feelings about the psych unit because there I could not stop crying.  I cried for most of first probably 5 days and did not care who saw me or what they did about it.  I spent literally the entire first day crying, even when semi-engaged with something else.  A locked unit is the only place I've ever felt completely safe to cry.

So explosive crying happens sometimes.  Last week though was far beyond just a bit explosive.  It was insanely, terribly painful and it was frightening because my crying and my every emotion was far more intense than it should have been.  It was scary to cry like that, to feel so little control.  And then, to make it harder, the panic attack involves the rest of your body so that you are shaking and gasping for air and certain you will never get a deep breath again, and at least for me all the pain that I never let anyone see comes out.

Thankfully I don't remember all of it.  I remember maybe the first 10 minutes and then the last 30-45 when I was working hard on calming myself.

I hate the idea though because it's been so long and now I am afraid it will happen again.  I know I'm under extraordinary stress; baby's birthday plus some intense work stuff plus surgery plus the scary surgical plan plus I thought Dr. Brain as mad at me plus Dr. Mind is away combined to make a horrible mess.I also know that although I had no idea the hormones were out of control and I was probably already having mood issues I didn't see somehow. I hadn't slept well in a very long time.  I had this new blog design which I truly do like a great deal but I did not get what I had pictured and didn't feel like I had a lot of warning that what I  pictured  wasn't what was coming, which would have made me shop around a bit.  Even now I'm disappointed because one thing I asked about and was told yes could happen several times never did and when I have asked about it I didn't get an answer, so I guess that is no.  Which is too bad because it would bring some of it together.  It's one of those things where it's my own fault as I didn't have enough technological knowledge to know what to expect and because of that I didn't picture the right thing, yet everything but the one part is there and it's all good.  And because I spent a good bit of money on this I wanted it to be my dream, not just close to my dream.  But someday.......you know, over the rainbow and all that :).

Anyway, time to take pills and switch from computer to nook.  Turns out the nook gets me to sleep faster than the computer thanks to the lack of glowing.  Good thing to find out.  And I'm reading one of my all time favorite books ever, Anne of Green Gables, which is always something I can attend to and smile about.  Plus, 25 classics for $.99?  Who can beat that?

More destressing to come.......I feel fairly sure of that one at least.

Saturday, July 23, 2011

This week

(All grammatical and spelling errors courtesy of Vicodin).

This week I've posted a lo tof snippets and not a lot of explanation.The last real post states Dr. Brain had told me that I possibly could stay on my MAOI and what did I think of that.  I thought no.  I spent a lot of time talking to Dr.Mind about this and he was quite supportive of my feelings/I thought decision.  Dr. Brain, it turns out, was not.  After a lot of time consulting with various anesthesiologists she pretty much told me I needed to follow this protocol that has just been developed for volatile patients on MAOIs at Cleveland Clinic.  I would stay on the MAOI and everything would be addressed in a way that would keep me safe.  I was not happy.

Then Wednesday I had the great panic attack.  I think that knowing that not only can I not responsibly have children what with the whole crazy mood swing things the fact I probably have a diagnosis causing infertility and that my niece is loved so much but is still not mine and that I love her so much and yet will fail her throughout her life because of a stupid disease and that she is going to sometimes see me not as I want her to, it hurts.  I had a few uncles I thought were perfection when I was tiny and I hate that she'll go from thinking "Aunt JEN!  She loves and plays with me and always brings me a book!" to "Aunt Jen!  I love her but I know that sometimes she can't do everything all  my other aunts and uncles can, but she does always play with me and brings me books".  It's all complicated and I can't express it well; I need Dr. Mind's help her and am under strict orders from Dr. Brain to work this out.  Dr. Brain called me soon after the panic attack and talked to me for a long time.  She told me she wasn't mad when I thought she was, just trying to be very factual, I think because it was one of the few times ever that she'd decided my opinion needed to be overridden and she was trying to express why when to me it felt like she was ignoring my thoughts.  She told me a lot more about the protocol, and explained that to be allowed into it she had to give a clear statement that she believed without the MAOI I would be at high risk for becoming suicidal.  The way that it had to be stated (she read it to me)  made it clear that first she'd been afraid to have me off, and second that it is totally unsafe to consider it.  Also, the protocol makes it very clear at all times that meds are careful monitored and it sounds like staffing will be limited to specific people who are the only ones allowed to give meds, and those people will all be hyper-aware of the restrictions.

The next thing has been trying to find out how things are going to work out.  There was a lot of confusion, and continues to be, as there are currently 1 psychiatrist, 2 gynecological surgeons, 5 anesthesiologists, 1 scheduler, and some kind of nurse involved in this.  I'm told different things by different people and so I have no idea how long I'll be hospitalized (per Dr. Brain the developer of the protocol says 1-3 days and it sounds like the night before as well as after surgery; I'm scheduled for 23 hours per the surgeon).  I have pre-op moved up and it includes a long anesthesia consult and at that time I'll find out the truth.  Pre-op is 2 days long now so I can see both surgeons as I have some major questions regarding my laparascopy that I didn't think to ask when I saw the doctor because I felt so horrible.  So until then I don't even have a clue how long I'll be off work.  Given that I'm doing this as a very complicated patient (the special protocol I think has not been used many times at all), ashtma, very limited options for pain management  (aside from tylenol there are only 3 drugs possible), and I'm having multiple procedures all of which are expected to cause bleeding, I am expecting to have a little more recovery than the typical person having a laparascopy.  Even more complicated is that nobody knows that the laparascopy will do; it could vary from checking out my pelvis and finding nothing at all (I think biopsies are still taken) to finding any amount from a little to a lot of endometriosis and removing it, to removing my ovary.  That all of course is going to affect healing and recovery time as well.  So until I have pre-op i just have to wait and try to stay calm.  This involves meds, lots more than usual.  The real plan was to "pulse" my antipsychotic this weekend to try to rapidly stabilize me but since I wound up needing vicodin more that's on hold.  So I've made about 200 calls to Cleveland Clinic and still don't know more than I won't know much until the 17th.

To top all this off one day I came home from work and my deadbolt was broken and I was locked out.  Other entrances are available, just annoying, and I just now (had to wait for cool) messed with lock long enough to finally remove the old one and while I couldn't get the new one on I did manage to give the appearance on the outside that my door has a deadbolt, which around here will suffice until tomorrow.

I'm training an assistant and finding that having to talk for 8 plus hours/day is also taxing.   I'm used to lots of quiet breaks driving between patients, having my car organized a certain way with everything I need in the front, etc.and now all that has been changed.  Temporarily, but changed nonetheless.

I think that's about it for why I've been a mess this week.  Next up is figuring out how to get to sleep when the vicodin plus my regular meds didn't do it.

Fun stuff.

I have no secrets

I understand there may be a man amongst us.  Who knows, could be more, but the last time I heard from a male was eons ago.  There's a crazy story that I don't even know that the man in question knows fully but that thing with everyone having a few degrees of separation sometimes is true.  If you are and are squeamish skip a paragraph.

Let's just say without sharing too much that my last menstrual cycle was nearly twice as long as it should have been. I also have had a grand total of 2 days that haven't been pretty continuously painful since that cycle.  I just found out from Dr.Body that a follow-up check for anemia after the last time probably would have been a good idea given how I felt.  I was going tomorrow in order to prevent further issues with this cycle.  Too late. So I guess we'll REALLY know after this.

I'm so fed  up.  After the panic attack I was going to do a short burst of antipsychotic to try to boost my mood/calm me down without affecting work.  Thanks to needing vicodin I will not be doing that.  But at least this won't cost me days off work.  I hope.  But I need to keep making myself focus on this is just a time to have a lot of faith.  Dr. Body says I'm handling this well.  I think he's lying, but it was nice to hear.  Because I'm not.  I can't stand not know specifically what is happening.  I'll write another post about what I know about what is happening, but it's all confusing.  And right now Vicodin and a cat who even through her dementia know when I'm hurting and comes to make it better are making sleep come.

I hope to post several things this weekend, including what has been going on, the special MAOI protocol I'm being put on for anesthesia (one qualification is your doctor has to state in a letter that being off an MAOI results in a risk of suicide. Dr. Brain told me that part very gently but that it is true.  I am much more attached to those patches now........), the story behind my new look, and if I can complete the thoughts some new insights on how much I am realizing that I cherish my Appalachian culture more and more .  I told someone yesterday who asked about my leaving for grad school and then coming back that after I was gone a while I was ready to be back near family and what is familiar, and then that after coming back I had realized how important my cultural heritage is to me.  (She was from elsewhere, an Appalachian import you might say).  And that made me think a lot about the last 15 months of home health have honed my appreciation for that part of me, yet another part I tried to deny for a very long time.  And for that matter, have I ever told you about trying to remove Appalachia from myself and what the end result was?  If you're interested in that stuff it's an interesting story.

Falling asleep, maybe (vicodin makes me very groggy but it's hard to sleep, although I have had my other meds too.  Too much heat, adrenaline, etc. today or something.

Lots to come.

Thursday, July 21, 2011

Too tired

I did better today.  I am very tired from all the sedation yesterday and had a lot of paperwork to do as yesterday's didn't get done until now.  So I'll write more tomorrow or Saturday and explain all that is going on, but just wanted to say that I survived, no more panic attacks, and Dr. Body is praying for me which is just awesome.

And now I believe I shall keel over in sleep.:)

Wednesday, July 20, 2011

I'm ok

I am ok.  After 2 hours and 2 doses of meds I made it to work.  I had 3 asthma attacks so the meds made me shake even worse, but I made it.  Work was great about handling things.  Dr. Brain called and gave me enough information to feel safe with the new surgical plan, which I'll explain later.  I think I'm going to have about a week off pre-op including 2 days of pre-op stuff and then a few days at home.  I obviously have a lot to deal with when Dr. Mind is back.  There's a lot about my niece being the closest child I'll have (obviously adding if she has siblings), and I don't know what all.  I also have a fear of having surgery involving essentially 2 doctors doing different types of pelvics, followed by the bigger procedure, while I'm unconscious.  I don't want to be awake for those 2 pelvics as they'll involve pain and I barely handle the modified ones I typically get, but it is hard with the control issues.

There's just a great deal going on, which I'll explain more when I've recovered a bit more.  for now i'm not falling asleep so I'm going to take even more sedation and try to rest.

Scary panic attack

About an hour ago I posted happy birthday to my niece on facebook.  This began the worst panic attack I have had in many years.  I am still having some symptoms and it has been an hour and I've been medicated.  I don't know what triggered it; I'm thrilled she's a whole year old.  She is, after all, my favorite niece.  I think that the moment of memory of what this was like last year, and all the stress in my life at the moment collided.  I am having to go in to work late and miss a meeting because of trying to get calmed down.  However, I can't really go in while shaking and shivering (after effect of too much adrenaline) and my face swollen and on the verge of tears.  I just can't believe how bad that one was.

Of course as the adrenaline leaves that just makes me tired.  Tough luck there......

Dr. Brain has been contacted.  At least now I've re-read what she wrote yesterday and although I thought she was mad at me I don't think so anymore.  She's probably sick of me, because I've emailed her about 5 times lately and Dr. Mind did as well, but can't help this one.  I'm also calling her office to be sure she gets the email because she can't go on vacation without med change options if that's going to happen.

I also am definitely not going to my niece's party Saturday.  It's more than I can handle right now.  Oh, and did I mention that my front door deadbolt worked nicely yesterday morning and now the door won't open?  So I have to change a lock or pay a locksmith.  Yippee.  I've tried this before.  It's not easy.  hopefully it will be easier tonight.

Pray for me today if you pray please.  Not gonna be easy.

Tuesday, July 19, 2011

Not doing well

It's too much to go into to try to explain right now.  I just finally quit crying and I have to get some paperwork done and get to sleep.  But a lot of things didn't go the way I wanted/hoped/prayed today, other things broke, I am so tired of not feeling well and so tired of saying that knowing that everyone is tired of hearing it, etc.  I'll explain more later, but please keep 2 of my families in your prayers as their heartbreaks are part of why I'm so sad; pray also that Dr. Brain and I can reach a truce since I'm pretty sure I made her pretty mad; that I can be very strong during Dr. Mind's vacation,and that sleep for once is restful and without being awakened by a demented feline.  I've simply reached my limit and have no way to change anything to help with that.

Saturday, July 16, 2011


So yesterday I explained to work about the MAOI taper, time off work, etc.   Thursday Dr. Mind and I went through it all.  I thought everything was in place. Until I got an email from Dr. Brain.  One of the anesthesiologists feels the anesthesia can be done without the MAOI taper.  Good news, right?  Except I did not feel good at it at all.

For one thing I've sort of been banking on the time off.  I have a significant depression going on here and I realize that going off my antidepressant won't make that go away but it would let me have some time to function at a lower level while not feeling well.  Between being in pain all the time now and various other things I have depression that is relatively severe and 4 weeks of working while in pain is too overwhelming.

I later asked about if I could come off to try some aggressive med changes prior to surgery to let me have some depression management.  If I'm on the antidepressant I'd rather not go into surgery with something that could make recovery harder.

And  then I realized my real problem.  I don't feel safe staying on the MAOI.  Too many doctors have too many opinions.  Too many doctors don't know enough about MAOIs, much less nurses who operate on standing orders at times and could easily not think/not know what to be careful of. and give me something that would interact.  I'll need breathing treatments and those interact with the MAOI.  And it would be possible to have an anesthesiologist who is the one actually doing my procedure want me off the MAOI and send me home, which would be unbearable.

So I sent yet another email to Dr. brain with these concerns.  As odd as it is, as  hard as it is, I want to come off it.  I feel safer that way.  It's not all about time to handle my depression, it's about that but it's also about feeling safe with being unable to protect myself from the wrong meds.

I don't know what she'll say.  I hope she'll understand.  It's a big thing to do because of fear, but it's also very valid fear.  And she strangely wasn't pushing this approach really, just asking what I thought, so maybe the same things have occurred to her.  Hopefully we'll see soon.

Thursday, July 14, 2011

How you can help me, please

I saw Dr. Mind tonight.  We talked a lot about plans and making decisions that keep me home and safe instead of dragging to group in the hospital when I can't sit upright comfortably.  His greatest-and very correct- concern is that I will do as I have in the past, telling him that I need to be off work but want to work 4 more days.  This makes me much more ill than if I stopped when I knew it was time.  I told him that knowing that stress means the difference between hospital and home makes me much more willing to stop work the day I realize it is  too much or that he tells me it is too much.

This means I need to go through these next few weeks with the attitude of waiting to feel my symptoms are making it hard and then stopping, not waiting to be forced to stop or to meet some crazy goal I set.  Which is where you come in:  if you see me do that or even THINK you see me do that you can leave a comment telling me so.  Often what I say with Dr. Mind came out here first and if you see me digging a hole that sends me to the 6N "spa" (Dr Mind's euphemism) please say something.   I won't be upset, trusting that I will catch myself doing this is pretty hard as I've struggled with that for as long as I have had this.  This time it is more important than ever though because for one thing I need the confidence of handling this correctly, and for another I need desperately to stay out of the psych unit.  If I wind up there I hope it is for only a few days pre-op.

I told Dr. Mind that I think the key is to think backwards.  Normally I'd be saying I really hope to stay working until about a week before.  This time I'm thinking more "I already don't feel good and so I may have to stop when it hits my system that a change has occurred, so it is likely I'll be off in early August.  It feels odd to try to be less positive instead of more positive but I need to make myself see clearly and be very open with Dr. Mind so he can say stop and get me off work the minute it seems needed.

Like I said, no feelings will be hurt if you tell me I'm making excuses to keep working.

And now I seem to be falling asleep.


I'm struggling still but have almost survived this week.  Which has to count for something.  The biggest problem is that I want to sleep all the time.  That means it's very hard to get paperwork done. It also means that everything is a huge effort.  I have to go see Dr. Mind soon.  I am so tired I want convert to a phone session but know he probably needs to physically see me to really assess how I am.

Last night I kind of made a fool of myself.  I was right but handled the whole thing the wrong way.  I had an inhaler that the counter failed on.  I ordered new ones when I should have based on the counter, but then one day after my asthma kept getting worse the thing was empty.  I got a new script from Dr. Brain b/c she didn't want me to be without it.  I went to the pharmacy and dropped it off with full intent to go back that night but I was (guess) too tired.  I told them I knew it would be very expensive but that I would pay.  So last night I went for it (I've used another steroid instead the days I didn't have it).  The pharmacy has a sign that says to wait there for the cashier to protect other's privacy.  I waited. And  I  waited.  And I waited.And they kept helping drive up people but ignoring me.  One lady was actually cleaning shelves and never checked the line,seemed to stare through me a few times, but ignored me totally.  After I waited 20 minutes I finally asked if anyone was going to help me or if I should just go.  The clerk berated me for standing behind the sign.  I pointed out that I was doing as instructed and that it doesn't say this one means if someone is in front of you and it is just as much a HIPPAA violation for me to overhear what the drive-through people at getting.  She continued to blame me.  Then my script was nowhere to be found. I found it finally, sitting in a box on a ledge there and it had a note that my insurance wouldn't pay and it cost over $100.  I asked why I had not been listened to.   She got the script done, the pharmacist came in and the clerk said in front of another customer and both other pharmacy workers "You need to check this.  Someone messed it up and now I'm getting crabbed at".  This is when I became furious.   I very loudly since she was clear across the room and being loud enough for me to hear informed her that I was not angry at her for that, I was  angry because I waited in line and was ignored for a very long time.  The pharmacist then brought the script and told me that she had told them to fill it and that I knew of the cost.  I told  her, since she was the manager, why I was really upset and why I would not be back that store, including that mistakes are one thing and no I probably shouldn't have been angry when I was ignored (or expressed it differently) but that the deciding factor would be that her staff have no business scolding or embarrassing me no matter WHAT I do,that not listening to me say I'd pay for it is annoying but being ignored then treated snottily was my objection.  If I can come up with the energy I need to convert all that to a  letter to the company, because as I look back I overreacted to some extent but I was really not treated well.

I'm also having a hard time with waiting to tell work.  I desperately want to but have not been able to grab my boss for 5 minutes although I've tried all week.  She'll tell me 15 minutes but by then she's involved with something totally different.  They need to be told, and I need to get it over with.  I do not need more to worry about.  Theoretically tomorrow although I'm not sure how tomorrow is going to play out.  We'll see I guess.

Monday, July 11, 2011

Pure irritability

I keep getting asked if I am irritable.  I keep saying no.  I am LYING.  I am so, so irritable.  And I've just become a truly dreadful person.

I am really not feeling well.  My body is acting like it at 4 different places in the hormone cycle at once.  I am in pain pretty much constantly.  If I rest it's discomfort, if I am active it hurts.  By the end of the work day it plain hurt.  Like most people, pain makes me grouchy.  I'm also so incredibly tired.  And my belly is so big that the sweats I'm wearing right now are about 4 sizes above my usual and they fit.

So this really started last week when my mother came up to gather up a bunch of plaster board/dust that was triggering asthma attacks.  I knew she'd be unable to stand my messy house, and that no reason for it to be messy would be valid, including "I have been sick or in pain for 10 months.  Deal with it".  So when she called I knew it would be criticism couched in something else.  Her choice was to keep saying " you know I love you, right?" while I kept saying "what".  Nothing good is cloaked in those words.  So then it's all about how she'll help but after this "we" meaning me have to hire a housekeeper.  I pointed out that when not sick I've done fine, that I've been improving things gradually  over the last month or so but it's slow, and that I cannot afford a housekeeper and do not want one.  So she's helped get part of my house cleaned up and then things have to be moved around to do more.  I appreciate this, I really do, because I can't do it.

But...constant veiled criticism gets really old really fast.  And then there was the move tonight.  She called last night to tell me that I had to be home for a bit tonight to help her move a present.  I told her it was a bad night because I have to leave at 6:45 AM and so all paperwork must be done tonight and that tomorrow is better.  This was ignored totally.  I got supper on the way home which she said she'd pay for.  We ate and then despite the fact I couldn't sit up straight we lugged in a piece of furniture she got me.  Which I needed and was very nice of her but I can't be lifting furniture right now.  Then she wanted to arrange things to make it fit, which I pretty much totally refused to  do.  So she left with the comment that it looked crappy but could be improved.   Thanks.  I'm sorry I'm in pain but I did not choose this. She also doesn't like where my ironing board is.  I like it there.  It's convenient and I have limited options.  Then she told me to come out get the $ for supper.  She started to leave and I stopped and asked for the money.  I absolutely wouldn't have bought supper on my dime tonight as I have about enough to maybe squeak through the week on  until I get paid.  So I said something about sorry but I can't afford anything like that right now and she told me she can't either.  So now I have a present that I like but don't have the energy or time to dote on and now I feel guilty because she bought it, AND I feel guilty that she bought supper when she said she wanted to.  And I hurt badly because heavy lifting is so not what I need right now.

So now I've managed to make her act as if I am ungrateful, wimpy, lazy, gross, and demanding in one week.  And none of that is true.  She is trying to dictate how to manage MY home, MY health problems, and MY life.

And let's not even start on the surgery thing....I am not supposed to be alone for 24 hours.  My initial response was that we'd tell them fine but that I would stay alone that night.   After the laparoscopy was added I changed my mind a bit after reading about it, and if my asthma doesn't land me in the hospital for the first night I really want her to stay here.  I know she wants me to go to her house, but my room there is upstairs, and besides that I want to be in my bed, in my house, with my cats.  She refuses to commit to anything until after the operation.  This is making me crazy since I need a sense of control.   Yes, that means 2 nights of using dog sitter.  I'm sorry, and yes I'll probably just sleep but if I don't and have no help it could be bad.  I feel horrible that I'm inconveniencing her by having multiple surgical procedures done at once.  Or by not feeling well on the way to doing this.  Her first reaction to hearing I had to go off the MAOI was to comment on how there isn't anyone to replace me at work. Have I not THOUGHT of this?  Do I not feel AWFUL?  But I have to get well before I'm good for anything.  Guilt doesn't help, I feel plenty of my own.

And now, thanks to lifting furniture, I'm reversing everything I want to do tonight and taking Vicodin and meds and going to sleep and then I'll work like crazy to get things done in time to leave tomorrow.

I swear that woman has a built-in control for finding ways to make me feel worse when I'm down.  Or for making everything MY FAULT.  Does she think I  have CHOSEN the ovary of doom?  Because truly I did not seek this thing out.  It hurts so much, is getting worse, I'm so tired I could sleep all day every day, and I don't even start tapering the MAOI for 2 weeks and won't feel bad for at least 3 which means 3 weeks of pulling myself around in pain.

I know I am putting the worst possible spin on all of this and that she means well. BUt she has no ability to handle my not feeling well because she never acknowledged such things in us as children, and as an adult she has no frame of reference.  So instead of doing what helps me it become about what she wants.  What she wanted tonight was a bigger, happier reaction but honestly all I could think was how do I lift at least 75 lbs when I can't sit upright?  And that's a decision I should not have had to make.

She's wrong, I'm wrong, everything is wrong. And now I need to find a way to get to sleep.  Which means moving.

Sunday, July 10, 2011

Surgery and MAOIs

So it turns out that until something was definite Dr.  Brain has been giving me the watered-down version of MAOIs and surgery.  It's a lot worse than I thought.  I thought I just stopped using the patch for 5 days then after surgery resumed, feeling better in a few days.  I should have thought harder about this.  One benefit of MAOIs is that they stick around in your body forever, like 2-4 weeks post stopping.  So in reality I can't just stop a few days before surgery and wait out my 5 days.  Instead I have to taper off, starting in 2 weeks.  I will probably feel fine for the first few weeks, but  am likely to have to deal with some significant depression by surgery time.  I will have to wait 1-3 days after surgery to restart, and then gradually increase to a regular dose and get stabilized. So, chances are very good that I am going to be off work 3-4, maybe 5 weeks.  No way to be certain but it is probable that I'll get depressed by the end.

The good thing is that my short term disability coverage is excellent and will kick in after 7 missed days, so the financial hit won't be as bad. And I will be seeing Dr. Brain just about the time it should be really bad, so that also will help.  I called and left a message that I'll need to see Dr. Mind for extra visits through August.  So that's all going to be in place and ready, and I'm hoping work will be flexible and let me work until I'm not able to handle it and then come back when I'm ready instead of pushing this.

The thing is that this surgery is very complicated.  It's simple enough procedures, but the MAOI makes things a thousand times more complex because it has severe interactions with anesthetics.  My asthma also will complicate things and from what I've read may even cause me to be admitted at least overnight although I hope not.  I see Dr. Lungs in a few weeks and will know more then.  I think I'm going to try to move that up a little so I see him before I start getting crazy.

I hate complications.  I'm so embarrassed about the work thing.  While since I actually started working for this company I have had very few days off that I did not make up and Saturday makeups are considered to be fine, I have been sick a lot, and now have to admit that what I thought was 2 weeks off is more like double that or a bit longer.  I also hate not having a very efficient way to communicate with Dr. Gyn. since she is so far away and I can't easily just go see her (although as I think of it I may try to get in to see her in a few weeks and then see if I can combine that with an allergist visit, then work a Saturday afterward, problem being how crappy I'll feel if I have to work that day since that means no 2 day weekends for a very long time-my niece's birthday party is one weekend and I really, really want to be there and have a feeling I won't be).  I guess I can also send a letter and she can answer via the computer system that lets her give me information like test results.  I also need to ask Dr. Brain to talk to her to see if there is a diagnosis from her end that will cover the early part of my disability as depression may not as it's pre-existing.  I need more details on my short term disability too as the thing I have does not mention pre-existing and may have eliminated it in preparation for the new laws.

Ack, just too much stress.  And physically I'm not good either so physically disability is probably good too.  My belly appears to be 4 months pregnant and if there is one thing I know for sure it is that I am not pregnant.

Basically, my friends, I am scared.

Saturday, July 09, 2011

I'm not good at this

10 days after declaring myself aware that I was not going to feel well for a while and that I needed to just deal with it and not put pressure on myself.  As it turns out I am not good at that.  Which we all knew going in.  I feel bad today and don't want to go to see Dr. Brain at all, except that she has to make decisions about the surgery.  Mostly I am just so tired I can't really even sit here or I'll be asleep.

I suspect I won't be doing the errands I planned for today.  I wish, but just can't.

Oh, and it appears the counter on my steroid inhaler was not correct and that it says I have about 20 doses and it is empty.  I have to hope the mail order place has the script I mailed earlier this week and then Monday I'll have to see if I can somehow get one from Dr. Lungs.  I need a sample or i'll have to pay a few hundred dollars and I just don't have that at all.

Dryer just stopped, my cue to go.

Friday, July 08, 2011

Just things

When my mother left my father she took nothing.  She was working on her PhD and I very literally went to his house a day or two later and pretty much stole the computer, 2 cats, the TV from my bedroom, her textbooks, enough novels to give her reading material but not be obvious, and a few other random things.  He was abusing the cats, so taking them was an easy first step and from there I took what I could because he wasn't paying attention.  His theory was that her leaving him was abandonment of a disabled person (whatever that means, esp. when you have a live-in girlfriend), somehow the fault of country music, and that everything they had owned was his.  Period.  She was able to buy back some things eventually and also gathered a good bit of stuff from my grandmother's home (it was his mother but as part of the settlement she bought the house cheap and she cleaned it so rather than giving him everything she kept things he'd not notice.)  So she had one box of random childhood books and a few boxes of childhood toys.  When we were kids she had carefully packed and saved a number of our best, most expensive, durable toys, along with a few things that were going to be collectible (we had the entire Smurf village/Smurf set, for example).  She's been digging out some things for my niece to have, and in the process discovered that unless I have a box that I am 100% sure I don't in my basement that somehow most of my toys did not make it.  My Cabbage patch kids-gone.  These other dolls I loved-gone.  Part of my teddy bear collection is preserved, but the truth is that I didn't care much for that and the one that I would have liked, the first gift I ever got from a boy, is not there and the rest are not important to me.  So that's sad.

But the funny thing is that while I wish I had one doll I could tell Little Anne was mine when I was a little girl, in a lot of ways I have better things.  I have (I learned tonight) the first doll I ever had, which my grandma made for my 1st Christmas, with matching outfit for me.  I have because for some reason he gave that much to me when he wanted my old bedroom for my little brother, a trunk of mementoes including many t-shirts I collected over the years related to different activities I did, prom pictures, some trophies and mementoes, the scrapbook I kept my senior year of high school with things like college acceptance letters, editorials I wrote for the school paper, etc.  Because most things that I felt he could use to hurt me, like my childhood diaries, cards, notes from friends, etc. that I knew would be less hidden after I left are all gone because I burned them personally before I went to college.  I never have regretted that because he'd already read my diary once and the second, secret diary that detailed the story of my first real boyfriend then the crash and burn after a few years could have been used to hurt me many ways.  I will never be sorry for not letting him hurt me.  But I do wish I had a few normal things from being a child.  We don't even have pictures that make sense as my mom grabbed handfuls and the selection was random.  It's fine, but it's strange, especially since the person who refused to give those things up truly didn't care and quite probably destroyed everything long ago.

Just another strange part of my life.

Hehe I have a surprise

And it's coming very, very soon.......

I'm so excited to share it with you.

Just Me

Tuesday, July 05, 2011

Signs you have an awesome doctor

When I first started seeing Dr. Body there were 2 things that made strong impressions on me.  One, he wore a cross ring that made it pretty clear he was a Christian.  Second, he accepted at face value my statements that I had not been and would not be sexually active until some later point based on religious values.  He even showed respect for that, where most doctors and therapists I'd seen to that point (not all, but most) had more shown disbelief, considered this another symptom of PTSD, or even a lie about the nefarious activities of a bipolar pt. who was not controlled on meds.  Instead of insisting on treating me as if I were sexually active because it can be a problem area for people with bipolar despite my stating I was not, he respected my decisions.  After a few visits he would get to that part of the exam sheet and just say "not sexually active, right?" and move on.  The only time he faltered he had to, but it was inexperience and how this made him handle it that made me laugh at him extensively (he was a brand new doctor when I knew him first). It was when I had lithium toxicity and was vomiting constantly and barely able to tolerate any foods (and before we knew that loss of appetite means I'm depressed or very manic or both) and we had no idea why.  Several tests had come back without answers and I'd been quite sick for several weeks.  He finally came in, sat down, blushed and told me "I have to ask this and I know the choices you've made, but are you positive you can't be pregnant?"  I told him no way. This is where he made his  funny mistake.......he followed up with a little education "because it only takes once you know".  I'm fairly sure I laughed immediately and he just turned more red as it hit him (I think) that he knew I had a degree in biology along with medical training and probably was aware of the way babies are made.  It was hysterical, even as horribly sick as I was, mostly because he was so very embarrassed.

But anyway, in the last year we've had numerous occasions to talk and shared faith has come up a bit more often.  I operate in a world where medical faith is a big deal to me and yet often is kept very separate (there's my master's thesis and sole journal publication), and in many ways I think that is right.  I only talk about faith with pt's if they bring it up, and even then have found some lecturing me on why I don't go to church, etc.  But I also go to a counseling agency that proudly proclaims that it is Christian, see a psychologist who is also an ordained pastor (a fact known to Dr. Body before he knew that Dr.  Mind is my psychologist), and have spoken of faith, prayers, etc. before.  We've casually discussed such things, but today I got home to a response to an email he sent in response to my telling him last week that essentially I'm finally aware that until my gynecological issues are resolved I'm probably not going to feel very good and am going to stop expecting my asthma to really improve until that's over and it's finally one battle at a time. I also told him how much I appreciated some feedback he'd given that helped me see why I wasn't communicating very well with my pulmonologist, particularly that I need to talk in terms of numbers and facts and not just feelings (because I lie about that) and I'm used to my doctors adapting to my communication skills because they are used to them.  I tend to be very concrete about health issues because they are hard for me to talk about.  And thus I left Dr. Lungs feeling that he hadn't listened when in reality I hadn't represented myself very well.  So I have a new plan for how to communicate with him, although I tried to bribe Dr. Body into coming with me.  But the thing that I finally realized was that the communication issue WAS me, as we did fine the first time.  Which is when Dr. Body had given them my history and issues in explicit detail and so a lot of what I was doing was answering factual questions.

His response was as supportive as ever, which I needed because being brave about this is not the easiest thing I've ever done.

But the ending was was I needed.....a human connection to one of these many people treating me now after so many years of allowing only Dr. Brain and Dr. Body into the roles of people I trust with my health.  Ready?
You're right, you I can't always be there, I'll try, but you are very intelligent and self-aware, and in these moments, when not overwhelmed, you communicate well. Just keep focusing on the attitude and perspective of above! :-)


Monday, July 04, 2011

PreSurgical Preparation

Yes,surgery is still 50 days off.  But I need to make it seem sooner, or that I have control over it, or something like that.  I need to be tough about what is coming.

So, I'll  be looking for things to occupy me while I'm feeling bad.  So I'll happily be accepting suggestions of books.  I'll want the following:

  • No sci-fi.  Will never change on this.
  • Easy to follow.  Simple stuff.
  • Relatively mindless.  Just fiction, either with a not too deep subject or with one that doesn't require a lot of thought.
I like mysteries (but not too intense) and well, most general fiction.  I listen to classics on CD in the car but won't but up to following that much thinking post op.

Now, to find a perspective for 50 days.........I left for the beach 35 days ago but that feels like an eternity.    hmmmmmmmmm........

Sunday, July 03, 2011

Every year

First, a look back at my childhood.  I'm trying to recognize happy memories as well lately, because they do exist and because I have started understanding that acknowledging them does not negate  the other things that happened.

We lived in the country, in the midst of nowhere really.  Fireworks weren't legal but there weren't exactly a lot of law enforcement.  And my father (and uncle when I was small) knew how to do some amazing fireworks.  Fourth of July was the night we were allowed to stay up later than any other night of the year.Then we'd have an amazing display, complete with home-rigged safety devices.  We also would drive to this rural place that overlooked the nearest town from a distance from high up and watch fireworks that way too.  It was fun and the fireworks were pretty and it was a touch of normalcy.

Then many years later I moved here.  Fireworks are a big deal here; it's a town thing.  Which is fine if it were restricted to town but it is not; instead the general public shoots them off for days.  I have one neighbor who shoots them off for at least 5, often 7-10, days per year.  They scare me as they live up the hill from me an are essentially aiming at me.  I have found evidence of near misses to my home before.

Every year I remember the year the blog started, 5 years ago.  I was home on disability and not doing well.  I was on high doses of multiple meds to get me to sleep and still I stayed awake.  I was exhausted and agitated and having constant mood swings. I spent hours and hours that year in my basement, hiding from the noise and crying.  My now deceased cat Elijiah would cuddle with me in the hammock I have in the basement and I'd try to read, or think or pray or anything.

Now every year that there are excessive fireworks it triggers that run and hide reaction.  I don't need to, I just wish they'd at least enforce a curfew for noise if not the fireworks law.

Saturday, July 02, 2011

My new game

Between my 76 mile each way (to the office, don't always go there) commute, plus 50-100 miles/day of driving between patients, I have a lot of time to think.  This can be good.  It can be bad.  Right now it's not the best thing ever.  I need to know the details of my surgery, and Dr. Brain hasn't gotten back to me so I probably won't know what she approved until next Saturday.  Some of it I do know, I don't think the entire laparascopy added, general anesthesia part is going to change unless she strongly objects and I already know she won't.  But whether the Mirena is allowed is up to her and the more I read the more I realize it's my sole chance at pain relief unless my ovary is so mangled that it is removed, and in that case there's probably more going on that will cause pain.

The more I read the more likely I think it is that I have endometriosis.  I had totally forgotten last year when I asked Dr. Body about my crazy periods and pelvic pain he told me that because I've only just started to learn to identify pain that it is possible that I have had pain for years that I've ignored.  I kind of put that out of my head after that but it does make a lot of sense now that I think about it and also that it's taken months of the pain getting more severe for me to finally make statements like "I can't live with this."  I have been having pain (that I was aware of)50% of the time or more for the last year, with it becoming increasingly severe the last 4 months, and it wasn't until it was keeping me immobile that I finally admitted to my doctor that it is too much.  And then I realized Dr. Ovaries essentially told me the same thing without having had the conversation Dr. Body and I had about my inability to admit to pain, my lying about what hurt in an exam to avoid looking stupid, and how he can help me admit to it.  One of the several good things that has come from destroying my ankle is the realization that my scary high tolerance for dental pain that caused the dentist to tell me he will not ever trust me if I say something doesn't hurt that he thinks should, or if I say mild pain he's going to assume severe until proven otherwise is not limited to my teeth, is that I've talked about this, become more comfortable with it, have helped Dr. Body know how to help me talk about pain since it's harder to talk about it to a man, and made me be more cautious about how I react when I hurt.  When I hurt my ankle I was at Dr. Mind's office, and I sat and suffered quietly until I got to his office where I bandaged my knee, then took my shoe and sock off and saw the signs of what I knew immediately was a severe sprain or break.  Even then we had a full session although I had to sit where I never sit (always think of it as "his seat" although he's not sat there since the 2nd session probably but it's where he was the first day and I'd be where I was that day except that he often would sit in another chair that was a weird angle that annoyed me so I moved and have sat in the same place for every session except the ones when my ankle was hurt and I think once when he wanted me in a certain place for a point he was trying to make)) to keep it up.  By the end of the session I couldn't get my shoe on.  So he carried my stuff and helped me out to the car, while I walked in sock feet on 15 degree pavement (not recommended).  Then I went to urgent care and refused a wheelchair, insisting on hobbling around, which is probably why they didn't realize how bad it was hurt.  Dr. Mind yelled at me when he found out I did that, months later.  (When I say yelled I mean more like pointed out that my reaction wasn't appropriate, in a kind but blunt manner.  He has only yelled (sort of) once, and that was deserved--I neglected to mention my suicidal thoughts until I was leaving, hoping to avoid discussion.  I no longer do that.  We've had few heated discussions, and I tease him about yelling, but shouldn't say that here. I know I've made him mad several times in the early days and he should have been mad; I fought him tooth and nail about things he was doing to keep me safe.  Eventually we reached an understanding that I do not lie or avoid things related to safety; I do not fight if he says I need to be hospitalized (I went behind his back years ago and presented my side to Dr. Brain before he did; I won on the basis of she'd known me for years and he hadn't, but truthfully, he was right); and he trusts me because I've shown I'll be honest right up to telling him I was not safe to be home and needed to be admitted to the hospital, and because when we had a very long argument about whether things I was doing to keep busy while manic were safe and he found out I was planning to use a carpet knife which I shouldn't have been near since I was shaking wildly from recovering from lithium toxicity and at the end after talk of hospitalization for safety, 48 reasons it was a bad idea to have that knife and why I couldn't care less because I thought I was fine and wasn't purposefully going to hurt myself, he finally just asked "if I let you go home are you going to use that knife?" and I told him the truth, yes.  So he kindly talked for a few minutes and all the hospital threats went away as he seemed to have LISTENED, and so I agreed to give him the knife.  He calmly went the car with me and managed to seem to just be talking while carefully pocketing it, and a month later he gave it back.  That was a turning point for us, about 3 months into our relationship and it was a turning point-he doesn't threaten the hospital and I don't lie or refuse to listen to what he says about danger.)  And I have no idea what all those asides are for, but I'm exhausted and waiting for fireworks to end so they are staying b/c I'm too tired to fix them.  Anyway, the point being, that experience let Dr. Mind help me see how little attention I paid to pain, then the horror of learning I had run many miles on an ankle that should have been in a cast made me realize all the pain in my life I HAD to ignore because you hardly can complain about the bruises inflicted by someone intentionally to that person, and because many things that happened to me when I was very small hurt and I didn't understand so I made up other reasons for the pain, or I just blocked it out.  Which is the whole point here, as I suspect that it has taken my progress in therapy to reach the point that I can feel pain I may always have had.  I know I had very painful cramps when I was a teenager.  They got better when I starting running daily at 14, and I never thought much about running teaching you more ways than I had already mastered to subvert pain.  And now I do acknowledge pain and so I've had to hurt with pain I may have ignored for many years.

Endo. is not going to be a good diagnosis for me.  It's not for anyone, and I do have the advantage of not being affected by infertility in the same way most women are.  I also, I suppose, have the advantage of being a bit older and closer to menopause than some people, but that's kind of a grim thing to call a happy thing; we're still talking at least 10 years of hurting.  For me though it is really bad because hormones help, serious hormones are the best help, and for me I'll have whatever can be removed in August taken out, I'll have the "less conservative than usual" consideration for ovary removal, and whatever help the mirena gives, if Dr. Brain is ok with trying it, which I will be begging for (already did but she was away and didn't get the email).  But that's about it.  What is removed can/will grow back.  I don't think they can keep going in and removing it, esp. with general anesthesia plus MAOIs plus asthma being such a bad combination.  I also can't take normal pain meds, meaning I'll be using vicodin to get through periods and praying to be in the percentage of women who don't have periods on the mirena, assuming I can have it.

I could be wrong.  She hasn't said the word really, just that she is certain I'll continue to have ovary pain/cysts and that we'll do whatever we can.  But I've read a lot, and it's the most likely diagnosis and I have a lot of symptoms.  I'd wondered why she wanted to do the cystoscopy (camera in bladder) thing after not thinking it was that necessary a year ago, and now I think that's also to see if endo. is the cause of blood in my urine.  After having had clots from my bladder a few times, that is also more likely I believe.

The rest of the thinking time is trying to figure out the $, trying to figure out how to make work happy that I'm taking 2 weeks off for a minor surgery, and trying to pre-plan.  Since I probably won't be very comfortable doing much for several days I went ahead and got a Nook (like a Kindle for those like me who hadn't heard of those until today; I realize by not watching TV I probably am the only one in the world) so I can get books loaded on it to read however I am comfortable.  I also need to get some DVDs.  That's next pay.

And I think the fireworks are finally about over, so I'm going to take meds and sleep for about 6 years.

Friday, July 01, 2011


I spend a lot of my time, especially in the summer, teaching people who have breathing issues or other health issues how to best use their energy and how to save energy.  I have tried to make myself follow the same rules this summer and have learned that I teach people to do things that are HARD.  I was out of food.  Like no bread, little milk, almost nothing to eat out.  I also was out of dry cat food and while I can make it eating strange things they can't.  So I went to the grocery.  I tried to time it and go, but when I'm tired like this it takes me much longer.  Lists don't help because this store moves things around a lot (aka I rarely go there and it's always different when I do). So I have used much of my energy have to put away food as soon I finish this and scheduled a REALLY full day for tomorrow.  That's because I either have 2 half days this weekend that don't make sense, or one big day.  I asked to work from home on Sunday; I didn't hear yes or no.  I think if I don't I will ask to take it as unpaid, then when my surgery comes I won't feel the financial hit.  But I have to check my budget first.

Anyway, I better get that food put away as I'm falling asleep sitting up and desperately need to find supper and get to sleep.  I see salsa and chips for supper.  That's a vegetable, right?