Across and Inside my Universe

Why My Knee Replacements Were So Extra Traumatizing

Total Knee Replacement surgical recovery is a grueling, wearing, painful (in so many types), exhausting (both physically and emotionally), often torturous process/experience.

While I don't want to diminish the purely physical aspects too much, and say they aren't traumatizing, I believe that the worst of what I went through after my surgeries are the ways in which my mental illnesses and disorder(s) added additional difficulty to the already excessive pile of what I was enduring, fighting, and dealing with.

These are the things that brought me close to suicide before my second surgery.  One of these things is the thing I think about when I'm trying to build my confidence, and tell myself, "Hell, if I could deal with THAT, surrely I can handle this other thing I'm not wanting to face."  These are the things that I think of when I think of the hardest things I've ever done, that don't directly involve other people (My husband and daughter, obviously, were highly directly affected by my surgery, but here, with "These are the things", I'm referring to the extra issues and struggles my anxieties, etc. added to my experiences with my surgical recoveries, I'm referring to the personal, internal struggle with these things.)

I've been meaning to write a series of posts for quite some time about it, including ways in which CBT was helpful in dealing with some of these things, but . . . the worst experience, that I had to face and beat repeatedly, has been something that I've not found the words to adequately describe, yet.  Crippling, overwhelming, monstrous, encompassing dread, is a beginning to describing it . . . the fear of fear itself, is another, but . . . as I say, I haven't yet been able to describe it even halfway satisfactorily, and what I've just described doesn't do the job either.  Still, it's what I"ve got, so far.

You'd think, having faced this monster that I dealt with daily for a couple weeks after the first surgery, during the second half of the first month of recovery, that approaching the second surgery I'd have some sense of efficacy in having (mostly) successfully dealt with it.  However, it was something I just . . . bringing yourself to face something so . . . difficult doesn't begin to describe it, either, well . . . I just wanted to die, rather than go through that all over again.  It was enough, by itself, that I just couldn't see doing it again.  Ultimately, I did, and that's one reason why it is what I think of when thinking on personal strength.

I did, eventually, tell myself as I got ready for the second surgery (about 4.5 months after the first) that "Hey, you repeatedly dealt with this monster last time; you can do it again".  However, this only reduced how difficult it was to deal with by about 10-15%; not insignificant as any reduction was helpful, however, given how hugely monstrous in scope this felt like to deal with, it sure didn't feel like much as I faced it again.  Also, I'm generally used to get much better reduction of distress when using CBT; on a few occasions, now, it's been much less.  That doesn't mean it isn't useful, it's just not a be-all-end-all.

Anyway, I'm sorry if I sound so mysterious about what I faced.  I just don't want to attempt to describe it more in a way that really sounds . . . stupid, until I feel I can describe what I experienced more satisfactorily.  Maybe I'll never get to that point, I don't know.

However, it does make me feel better about myself to stop beating up on myself for being so traumatized by what I went through, when I realize that much of the trauma was from the ways in which the mental crap/issues/illnesses I have to deal with, when I realize that it is the extra challenges they added to the mix, is where much of my emotional trauma came from.  Maybe I'm not a wimp traumatized by a bit of pain, after all.  Even though what I dealt with involved alot of fear of pain, it was the fear, and the fear of fear, etcetera, that were what I hated most, what were the most distressing things.

*While dealing with the leg machine that would move my knee through varying degrees was awful, and the anxieties etc. associated with that were part of my difficulty, this isn't what stimulated the worse mental/emotional struggles/trauma.

Currently Fighting "Full-Blown" Mania and Suicide

I put the full-blown in quote marks, because that's how my psychologist has put it; he says I need to tell my psychiatrist that I'm quite suicidal as well as suffering from full-blown mania with all the reckless/bad/dangerous/stupid/risky/wrong stuff that goes along with that, with my particular manic urges.  He used a more specific word for that than all those I just used, but I'm not going to get more specific with what it is that I feel pushed, compelled, drawn, etc. to do when I completely lose myself and most or all reason, when most or all judgment is either turned off/removed from me or so buried by the mania that regular rules and social conventions of behavior feel meaningless to me.  The feeling of invincibility pushes away any possible reality checks of potential consequences of the behavior that feels so compelling.

However, while I am manic at present, I am not completely altered; at the moment, there is enough of me around to stay on top of this.  There have been some pretty thin moments, however, and these completely disgust me.  They disgust me so much that if I the means, right now, I'd need to be in the hospital, for I would be quite a danger to myself.

We have removed any means, and so I am "safe" that way.

I am disgusted by the urges, the compulsions, to do things that are not who I am, at least who I thought I was.  The more the mania goes on, though, I wrestle with issues, such as, if it's not who you are, then why do you want to do it?  But then, isn't mania, a hallmark of it, wanting to do things that are out of character, opposite of the kind of person you are when you are not in this manic, altered mental state?  The very nature of the illness not only removes the proprieties and judgment abilities that you most need in order to fight it, but it also pushes you towards the risky, the reckless, the dangerous, the immoral.  It further pushes you with the sense of invincibility . . .

However, I'm not trying to justify the bad things I want to do, here.  I guess I'm trying to work out how to live with myself.

I am in this particular spot, because the medication issue has become rather complicated.

We withdrew me off of Lamictal, by early January this year, as it was aggravating my kidneys, bladder, and associated other parts.  I was still on some Seroquel, although my psychiatrist told me I could get off that at any time, as she didn't think it was doing much for me.  However, I knew it was helping, and told her so, so we continued it.  Heck, she even had me start bumping up the dose, from 150 to 200mg.

However, the month before we started to bump that up, having run out of other mood stabilizers to try, and having been somewhat agitated somewhat frequently this last fall and onward, she prescribed an anti-I forget what it's called, but it's a blood pressure medication (not a beta blocker, as I have depression).  Clonidine, I think.  This medication was brilliant combined with Vyvanse; however, it made my bladder etc. worse.  I tested it twice, four or five days each with 5 or 6 days off between, and both times it made urinary issues worse.

It's my theory that the Lamictal had made things so bad in my urinary system, that it is hypersensitive to just about anything now.  I didn't take the Vyvanse consistently with the first test, and not at all with the second one.  The Clonidine still set things off.  I thought about testing the Vyvanse, but figured I needed to let things calm down . . .

Ok, so the next month, February, we start bumping the Seroquel up to 200mg.  I start noticing it setting urinary issues off as well, so I go back down and continue at 150 a while, but every now and then I forget to take my generic Ditropan (oxybutynin) and notice that there is still need for it; either the urinary system still hasn't recovered from the Lamictal, or the Seroquel is setting it off.  Having taken the oxybutynin for a month after coming off Lamictal myself over a year ago, it only took a month of that to settle my bladder down (however it WAS a couple months after I'd stopped the Lamictal, so maybe some of that time off the Lamictal helped in the recovery as well, although no improvement was seen til the oxybutynin settled things down over 4 weeks).

Anyway, so I figured I'd been off the Lamictal for 6-8 weeks, and had only taken the clonidine a couple short stretches 3-4 weeks before, so the fact that there were still symptoms the oxybutynin was needed to relieve, bothered me.  However, I'd taken the Lamictal for much longer, with much more already sensitized and aggravated urinary system, and it had gotten to where I could feel at least one of my kidneys on a practically daily basis, with constant abdominal and other pain, etc., by the time I stopped Lamictal this most recent time.  Within a day of lowering the Lamictal just a little, the relief in discomfort was shockingly noticeable.

Anyway!  Things are a bit muddled, as you see, but as I kept on with the 150 mg Seroquel, and the urinary symptoms doesn't go away, I felt it necessary to see if my psychiatrist was still okay with me dropping the med, as she had been a month before.  She was, so I did it as she instructed.  However, I finished that a couple weeks ago and the last several weeks have been so damn hard, fighting this mania, and the suicidality . . . my therapist thinks my psychiatrist might have me go back on the Seroquel for a time, and I can understand that, given how it's my life in the balance (however, I don't have a method, so maybe it's not?  but then the mania, if I fail to successfully fight it, that'll leave me in awful shape, among many other things, things I don't know that I could live with, not that I'd be able to do anything about it).

We have been here before.  Last September, and the choice was made to keep on with the Lamictal, which I did, but three months of it aggravated things so badly I couldn't live with it.  I fear that if Seroquel ends up in the same situation, I'd never be able to take it again.

Here's s'more theories, although I realize I shouldn't base my life on a theory.  My history with Lamictal, and with Seroquel, leads me to have some hope about the Seroquel.  The first time I ever had Lamictal I was only on it for a matter of weeks before a rash had them abruptly stop it.  The next time, was at the beginning of the very very slow, gradual buildup of bladder etc. symptoms that seemed to follow as a result of taking the med.  My history with Seroquel, well, the first time I took it, was at 100-150 for a month or so, then up to 300-400mg for some months, 3-5 or so.  At that dose, if it was going to mess with my bladder that was long enough to have noticed, even if it had been as slow to come on as initially happened w/the Lamictal.  (until I stopped the Lamictal one December, then began it in late April of last year again; the slow onset of bladder symptoms started up slowly again, but twice as fast as the year before, as I guess my system had been sensitized to it).

So, I have SOME hope that if my kidneys and bladder can recover from what Lamictal did to them, that my system will eventually not be oversensitive and I can take, again, medications that never set them off before, like Seroquel (and hopefully Clonidine, I would hope that I'm not naturally oversensitive to so many different types of medication).

I'm supposed to see a urologist to sort this all out, however, my physical isn't til April 15th, and I'll get a referral to a urologist then.  It's been months coming, it's just taking forever and with the mania and suicidality, I may not have the luxury of not taking the Seroquel.  Besides, part of me wonders of the urologist will find anything wrong, I'm not taking anything that's setting it off.  As well, I would so love to have this mania etc. reduced . . . however, I know that the Seroquel has been setting me off so recently, that it is quite likely to still be doing so, and if it does, it may make things worse, as the Lamictal did.  Maybe it won't, if it wasn't the primary aggravator . .

Who knows, maybe the fault is with the kidneys, etc. and something is wrong THERE, that is leading to all this.  It's so damn frustrating.

It's just, we've been here before, and it's . . . well it's embarrasing to put out a plan, the psychiatrist goes along with it, and then LOOK, the bipolar person coming off her mood stabilizer, is becoming unstable, and has to go back on . . . . . . better than dead, I guess, although in my current state of mind that is highly debatable.

Basically, I'm hanging on for dear life, fighting as hard as I can, and there's not much left of me to go around and interact with people and blogs the way I usually do.  I'm a bit annoyed at myself for commenting at a blog I read more out of the fascination of watching a train wreck, than because I have much respect for the author.  I find him rather disturbing in some of what he does.

Who Ordered All This Snow?

This is me, 9pm Friday, after shoveling 4-5 inches more of snow. Before this storm, there was 5 inches of old snowfall on the ground.

Weds night they said that from Thurs afternoon to Fri afternoon the valleys would get 3-6".

HA!  We had 4 inches in the first 3 hours yesterday.

This morning, my husband attempted to leave for work but got stuck backing out of our space; the snow was higher than the undercarriage of the car, higher than the bottom of the bumper, so after plowing through a bit it just was too much.

I was worried, with his Nov. 26 arthroscopic shoulder surgery, that he'd be shoveling and stuff; I got out there and helped get him back under our covered parking spot, but there was alot of pushing on my part.  Didn't know I had it in me!

So then I shovel a path back to our door (our landlord is the King of Cheap, no shoveling and he won't let us use salt either it ruins the concrete), taking many breaks because 16+ inches of snow on the shovel was alot!  That's just an estimate, it could have been more but I doubt it was less, given how high it was for trying to drive through it.  

Oh yeah, and more snow is coming throughout Saturday too.

I'd shoveled some with the next door neighbor the evening before.  (He had a stroke partway through his medical residency, and well if he's living next door to us he's in hugely reduced circumstances. I also didn't want him to think I didn't think he could shovel the walk, I just wanted to help as well as get to know our new neighbors.  All true!)

I'd say it's' snowed about 20-24 inches (or more, it's still snowing.)  I haven't seen so much snow in a long time; there used to be a big, big storm almost every year but the weather's been messed up for awhile.

So, we came back inside, my husband had already called in to work (it'll be an unpaid day off, he used everything paid for the week off for surgery, and even that didn't cover the whole week.)  It's a treat to have him home from work, and not from being sick, either.

We planned a day of coziness, cocoa, board games, and movies or shows like Doctor Who, just whatever we felt like.  I love dipping buttered strips of toast in my cocoa, like I did when I was a kid, but found out we were out of bread.  Oops.

It was nice to know I was capable of shoveling that depth of snow, narrow though the path may be.   I feel more capable, which is cool. 

Edit:  I just read the below posts on Tips for Shoveling snow, and I did great at all of them but one; bend knees, back straight, don't bend at waist.  It looks like I'll get to improve my technique tomorrow. 

Related articles

Tips for Shoveling Snow Without Injury to You!

Shovel safely tips to avoid post-snowstorm injuries

Confused

 

 

Anyway, Monday's apsychiatrist pt. has left me . . . confused.   The Lamictal is being stopped, for being the culprit of the bladder/kidney problems . . . but that's not what has me confused.

More at another time.

 

I'm starting to get spam trackbacks, and aside from turning TB's off, I don't see a way to manage or delete.

Do What Hurts the Most to Improve What Hurts the Most

Or:

No pain, no gain.

That's a little black and white, but since running from pain is what I do best, learning to just sit with my pain, heck, learning to recognize when what I'm doing is a defense or running from pain, is pretty much where I'm at alot of the time.  Yes, even after all these years of therapy.  I was sooo un-self-aware back then, and therapy's helped me alot through the years, subjective though my opinion might be.

So, to improve in areas where you social anxiety bell starts ringing, you need to at least approach that bell and face some of your fear, and learn that you can deal with that situation, without retreating, in order to make gains in that area.

Sounds so simple, doesn't it?

When spelled out intellectually like that, it does, but feeling it is quite intense and often difficult.  Still, I've gained some sense of efficacy in some areas I needed improvement in; oh, how many more there are!  

A month ago, when my husband started physical therapy after his arthroscopic shoulder surgery, I went with him and saw the therapist who'd been my physical therapist several years ago.  He's the owner of the place, so quite capable (or seemed so to me).

He asked after my recovery, and was unpleasantly surprised/startled to find that my total knee replacement recoveries have turned out so poorly.  He kind of quietly threw out there that perhaps some strengthening, exercises and such, could do improve things quite a bit, if not solve the problems entirely.  He expressed his sadness that I was in such lasting pain and again seemed to think that improving strength would help.

I found myself out of sorts after hearing this, and as I lay in bed that night I realized, "He's saying that I don't have to be in pain; that there is something I can DO about it."  I felt anger, because how does he know I haven't worked hard?  I have.  I felt frustrated, that he would just assume that something COULD be done, because I've had to come to terms with being in pain alot.  I felt anger that he was dangling no or less pain in front of me, if only I would CHOOSE it, the implication being that if there was something I could do to improve my situation and I didn't, then I was CHOOSING to be in pain (or at least, in as much pain as I am).  I did realize eventually however that most of this was how I felt upon hearing or pondering what hea said, and wasn't necessarily what he said, or meant.

I chose, last week, to get over myself and have my husband ask him what I could do (the holiday being kind of nuts, I couldn't make it to many of his physical therapy appointments, although I could have done better than I did).  Why let pride stand in the way of possible improvement?

What the physical therapist suggested is standing up and down out of a chair, like I used to do at physical therapy and at home during recovery, using legs only no pushing up on the arms of the chair with my hands, etc.  He also said I can use a pillow in the chair if I can't stand up without using my arms without it.  To that I thought, "What, does he think i'm THAT weak?"  I can actually stand up from a crouch now, and it was less than a year ago when I couldn't do that; I'd gotten in a crouch and was stuck (it felt like I had no way to make myself fall over either, weird as that sounds, so I could get up from there, so I felt trapped and feared getting in a crouch again).

However, a week or two ago I crouched without thinking about it, and got out of it myself (with agonizing pain, naturally, but still I did it.)

So, I'm going to start doing three sets of 10 of these, several times a day, with a day off in between here and there, as when you are strength training I know the muscles sometimes need time to build back up.  Or something.

I've got an office-style chair that I can and do usually keep set really low.

The thing is, standing up without any assistance from my arms, or from setting my legs farther apart, has the pain hitting a level 7 during the whole muscle-pushing process.  Level 7 is alot.  So, to stand there and do it ten times in a row, rest for a minute or two, do ten more, rest, and 10 more . . . well, that's alot of pain.

Still, I don't, I really don't, want to let pride or complacency get in the way of possible improvement, so an extra heaping of pain it is, and I'll note down every two weeks how my pain is, of differing types in my legs, and do this for three months at minimum.

I'm not optimistic, but  I guess we'll see.  If there's only a minor improvement, is that enough given that I'd likely have to keep up with some level of strength-boosting/painful activity to retain this improvement?  It depends on how much, if any, improvement we see.

**

On another note I don't think messing w/meds is a good idea.  I'm actually desperate to have higher Lamictal to be a barrier between me and aspects of my mania that I had forgotten how they felt, partly because I couldn't understand how I could feel that way and still be me; however, I am starting to be reminded.  I was going to go back up on Lamictal but just upping it a little, made the urinary system a touch worse, enough so that I just cannot make myself go back up; it'd be like having to use a hammer to squash a bug on my hand - I can't make myself do it.

I really, really don't want to get off the med, but I really, really can't live with the developed side effects either.  Just, this isn't me not wanting meds, I tried to make it work for a long time.  There's practically no choices left, of mood stabilizer (lithium has such a high side effect profile? is it? that I'd really like to let my kidneys and bladder heal up and have some time where I'm not constantly worried about my health and side effects; however, the mania isn't just going to go hide under a rock.  Ugh.)

When Your Doctors Don't Believe You

When your doctors don't believe you, you feel like you need to prove your problem/theory/what-have-you, if it is provable.

In my case, the Lamictal IS affecting my urinary system.

So the not brief but explained as briefly as possible history/experiences that I explained to all three doctors in September about these issues, WAS relevant, and I don't have to think of myself as a rambly, irrelevant person.

You see, I do ramble and/or am irrelevant at a variety of times to some degree or another.  BUT, I try to not do that at the doctor's office.

See, when I went and saw my GP a week after the Instacare guy prescribed oxybutynin, I did mention the bladder, urethra, and kidney discomfort/pain.  My GP said to keep taking it (because I'd laid out brieflly what happened after I stepped down off Lamictal, last year, unsupervised; it was what I consider to be likely a textbook case of how epically bad stopping a mood stabilizer on one's own can be.)

So, I kept taking the oxybutynin and the Lamictal. However, over the last three months the abdominal and sometimes side/back kidney pain had been becoming more frequent and too common.  The bleeding had gone away, the bladder was somewhat calmed down (although not like last March), but it still seemed to be over-producing as well as could only go about 4 hours, so it was still getting me up at night.  (Also becoming harder to sleep with the pain and discomfort).

The worries about it and the physical interference with good sleep are two factors in why I think the mania has been breaking out more the last few months.  The other factor would most often be stress from a juvenile court case in which I faced speaking in court, and other things (It's about the victim, not me, but since I'm not going to expose her on here, I'll risk sounding like it's all about me.)

These things all acted to marginalize the effectiveness of the 150mg Lamictal that I've been taking.

A week ago, it was getting so bad I wanted to go to my pyschiatrist, with proof, so I'd be believed.  Plus, I wanted it to stop.  So I cut my dose in half for a few days.

I did not expect such a quick or significant difference, figuring the urinary tract had been so abused for so long it'd need time to heal.  Within a DAY a significant amount of pain and discomfort was gone.

I knew that cutting the dose in half wasn't the wisest idea, so after a couple days I went back up, but only to 100mg.  I couldn't bring myself to take 150 and be that badly off, again.  The pain and discomfort went back up within a day of bumping back up, though not as bad as it was at 150mg.

Proof, anyone?

Now, I did consider that my judgment may not be the best right now, what with all the mania and stuff.  Also, the last time I took myself off Lamictal, the end results were . . . bad.

Still, this time it will be in partnership with my psychiatrist (as soon as I email her later tomorrow).  If she says to keep taking it, which I highly doubt, I'll do it until we meet and can figure something else out.  However, I hesitate to keep taking it for longer than needed to step down off it, because after so much abuse to my bladder and kidneys, what's the risk of permanent damage?

So, yes I took medical matters in my hands, but I didn't intend to do it for long, and as well the doctors didn't believe me before anyway.  Just because my psychiatrist said that this isn't a side effect of Lamictal, doesn't mean in my opinion that it can't EVER be; it's not a KNOWN side effect, perhaps.  Also, there are statistical outliers, people for whom their bodies' response to medications can or does fall way outside the reasonably or even rarely expected effects.

It's happened to me before, and now again.

I am regretful and a bit fearful that there is one less med between me and the mania; however, I'm on some Seroquel, which I wasn't last year, and I've handled twice as much as the current 150mg before, I think even over that to 400mg.  It was eventually stopped because at the time it was being used for depression, and didn't do much for that.  I can tell it's helping stabilize mood a bit, now, though.

Now, I actually don't think the doctors were wrong in what they considered and what that led them to recommend, AT THAT TIME (although they were still wrong, then, about the bladder/lamictal thing.)  There were several seemingly medically reasonable (to me) reasons to suggest going forward as the doctors had said with the Lamictal and the oxybutynin.  I'm glad I did things their way for long enough to know that not following orders wasn't what was going on.

My GP considered things with his knowledge, but also deferred to my psychiatrist as, I think, was proper to do given the risk of possible death if I stopped the mood stabilizer, since if I even THOUGHT I might start down the bad path from earlier this year again, I wouldn't be able to live with myself.  My psychiatrist, of the three doctors, gave me the best impression that she was weighing the pros and con of a medication that was possibly (though not likely as she did tell me Lamictal doesn't do that) harmful, against the pros and cons of stopping that medication.  She investigated anew with me how effective I felt the Lamictal was, and such, and I appreciated her doing that; it helped me feel that my experiences would all be a part of what she decided.  She said for me to keep taking the Lamictal, and I did, though reluctantly, because I'd been so tired of the bladder problems.

Knowing for sure, now, it IS relieving to know that something hopefuly fixable (after this long, has there been permanent damage?) is behind the kidneys/bladder.

I don't know that anyone necessarily cares about all this, but I don't know what audience I have in mind or think I have with this blog, so I'm all over the place with what I post and don't post.

Agitated

So, for almost a week my emotional and mental state has been all over the place.  I feel like a bungee cord that's been overused . . . . one hour I'll be thinking I have really good insights and have solved a really good problem (who says I haven't?), an hour or two later I'll be really really intensely something ELSE, a couple hours later I'll be biting everyones' heads off (or isolating myself or sitting on my hands to remind myself to say nothing), the next day I'll be so anxious I can't figure out why, later in the day I'll be really really positive that something is going to work out well, or that I'm capable of anything, a few hours later I'll be in a black storm of depression . . .  well, you get the idea.  On and on and on.

Soooo.  Today, I got really agitated writing the last post.  While what that Senator said riled me up, I don't think it's why I'm so agitated.   I can't, I can't, I CAN'T settle down; I have to say what I feel has to be said in order for the information that needs to be conveyed to be conveyed.  I HAVE to.

I try really hard to stop it, but with little success.

I went to an urgent care clinic today, and by the end of the appointment he was treating me a little bit like I imagine the mentally ill or obviously mentally ill sometimes are.  Patronizing, and believing not very much more of what I had to say.

JUST because I HAD to convey what was probably too much information to describe a problem that's been going on for some long stretches these last 18 months, doesn't mean I don't know BLOOD in my urine when I see it.  It'd stopped being sporadic and started being daily, these last 12 days or so . . . and that's besides the bladder pain, other or extra abdominal pain, and urethral pain . . .

SO.  It hurts, and it's bleeding.  Go to the doctor.  There WAS blood when I cleansed before the sample, there was blood AFTER I gave the sample (and no none of this is menstrual etc.)  The chemical analysis found BLOOD in the urine.

So, Mr. Really Old Patronizing doctor (well, I have to admit, he was somewhat patient for a large portion of the urgent torrents of explanation pouring from me; I'm so frackin embarrassed to be so out of control, I tried really really hard to be better but it wasn't working) tells me that while the chemical analysis showed blood in the sample, he looked through the microscope and saw none, so therefore there was none.

HELLOOOO.  There was none in the tiny droplet you put on the microscope slide . . . . this is why the chemical analysis, no?

AND, I emphasized again that I'd just seen blood there, twice, a few minutes earlier.  And that it had been going on for awhile, daily.

Really Old Doc:  "Nope, I saw no blood, so . .  . just take this anti-spasmodic for your bladder (and be a good dear and go away and stop bothering me)."  Parenthetical mine, but it kinda felt that way. 

I asked him if going untreated for a long time for overactive bladder could cause bleeding; he said no.  My pharmacist disagrees, he said the medication should probably help stop the bleeding, unless something else is wrong in addition to the overactive bladder . . .

While I'm not happy about the doctor, I do recognize I was a rather taxing patient, agitated and jittery, with compulsions and urges to say what I felt HAD to be said or I was going to explode.  Or something.

I REALLY REALLY hate losing control of myself like that in front of people; I don't do it often, because I stay home so much that it mostly happens at home.  Some might say, of course you can control yourself, you didn't try hard enough, but . . . they didn't feel it.  I did the best I could, but I was very agitated.

I think partly I ended up this way after 4-5 days of this emotional and mental whiplash I've been going through; my nerves are so frayed from it that I'm just . . . agitated.

Oh yeah, the mania doesn't help either, it fuels much of what has gone on . . . one day I was up for over 36 hours, and barely a yawn or two by the time I finally slept.

Usually I know what's been stressing me out that has led to the mania breaking through the medications, but I didn't know, earlier this week, why.  Although the last day or two, the health thing has been stress enough.  I hate the unknown.

Having Participation in Utah's State Electronic Medical Records Shoved Down My Throat

Edit:  After a bunch of ranting prompted by a Senator's comment, I've realized I should have cooled down before writing.  I'll post in a day or two my further opinions, including having read more articles . . .  but here's the basics without the ranting.

We're rather unorganized around here, so it's not uncommon to uncover a piece of mail that's months or more old, unopened.  Or opened, but this particular piece hadn't been opened.

It's dated July 19 2012, and is from the Utah Department of Health.  It says the following:

Dear Program Beneficiary:

A new state law this year requires that individuals enrolled in Medicaid, the Children's Health Insurance Program (CHIP), Primary Care Network (PCN), or Utah's Premium Partnership for Health Insurance (UPP) be automatically enrolled in the Utah Clinical Health Information Exchange or cHIE.

The cHIE is an electronic system that can help generate your medical history based on information from participating cHIE healthcare providers.  the cHIE provides a safe place for your healthcare providers to securely share and view your medical information.  Only authorized healthcare professionals can access your information and only for treatment purposes.

Based on available information, the cHIE helps your healthcare providers know what prescriptions you are taking, whether you have been diagnosed with a chronic illness, if you have ever had an allergic reaction to a medication, what immunizations you have had, and more.  This information helps doctros give you the best possible care because they know your medical history.

Beginning September 1, 2012, individuals on Medicaid, CHIP, PCN, or UPP will have their consent status in the cHIE set to PARTICIPATE.  You have the right to not participate in the cHIE or to change your consent status at any time.  You may also choose to give limited consent, which allows access to your medical records to healthcare professionals only in an emergency or for one particular medical visit.  When you leave Medicaid, CHIP, PCN, or UPP, your consent status in the cHIE will remain in effect for five years or until age 18 for minors.

For more information, visit www.mychie.org or contact your participating cHIE healthcare provider.

Sincerely,

 I have a variety of questions and issues I need to research, but the one that moved to the top of my list resulted from this article.

For now, Medicaid patients will be given a chance to pull out only because a mandate for them would require the federal government's blessing, which the bill directs state health officials to seek.

So, while the letter indicates I can opt out, it seems that may not be the case forever (or for long?).   A sentiment that is perhaps insensitively delivered is: 

As for Medicaid, he (Sen. Allen Christensen) said, "If the state's paying the bill, we get to tell you this is how it's going to be. If you don't want your records shared under Medicaid, that's fine, get out of Medicaid."

The Senator's name was added by me to clarify who said this statement. Parenthetical mine.

Perhaps the potential cost savings from better-coordinated care are a (justifiable?) reason to force opt-in (or eventually, forced participation with no opt-out) on those receiving publicly-funded health care.

Another quote from the article addresses this, sort of:

The cHIE promises to save lives, time and money by reducing misdiagnoses and medical errors caused by doctors having incomplete access to patient information.

I've never experienced any errors in medical care, or prescriptions, although that's just MY experience.  Since the disabled are a part of the population utilizing Medicaid, perhaps some peoples' more complicated medical needs would show some savings from being forced into this system/practice.  However, is it enough to justify taking away peoples' rights? 

This statement from the article sounds more like marketing for the cHIE than anything else.  Give me some studies.  I can eat crow, but that doesn't change my feelings that the Senator's opinion, phrased the way it is, is offensive, elitist, and other things.

And The Walls Came Tumblin' Down

Well, that's what it feels like. 

The window in our bedroom started cracking in the wood frame that holds it in the wall; plaster cracked and water came out, and eventually wet wood sawdust bits . . . the wall is sunk in and soft in the lower corners.  There's a hole in the siding just outside.

So, what does my landlord want to do?  Bring in dirt and slope the grade away from the window; it's become sloped toward the window.  He'll plaster up inside as well.

He says he has many decades of construction experience, and simply regrading should do it.  I hope so . . . the window is also sending a crack upwards in the wall above it, as it settles on its softened lower wood frame area.  Yeah, he's taking care of it alright.

Okay, so not long after that (and it's still not fixed, the window), I'm in the bathroom, and it starts raining on my head.  I hoped it wasn't toilet water; it wasn't, but it was kitchen and bathroom sink and laundry drain water . . . eww.  That one took them a couple days.

Now, a few weeks later, they are finally looking at fixing the ceiling above our toilet.

Also, around the same time, I pushed a hole in the wall by the toilet, as I have to brace myself lowering onto the commode.  Well, I suppose I could do without, but it's MUCH more painful that way.  This time instead of spreading out my hand flat, I used the heel of my hand.

Oops.

Okay, so now last night, the people upstairs are showering, and the drain in our furnace/water heater closet bubbles up and leaks into the carpet in nearby closet, bedroom, and hallway.  We use towels and a fan.  This morning, they start to shower and BAM!  Soaking wet all over again.

UGH!  I'm afraid of mildew if this doesn't get dry by tonight; we only have one fan, as we pulled our box fan out and it was dead.  So I just had to switch it to the hall which has had no fan on it at all, although the other areas are still quite dam (edit: Freudian typo? heh).  The hall is still WET, though.  Too bad we don't have a steam cleaner to soak some stuff up; maybe I can find someone to borrow one.

They just came and are gonna snake a thing down through the system.

My daughter is completely out of sorts with all this, afraid that we'll have to move, afraid of everything breaking, and stuff.  I completely understand.

I am so tired of problems, especially water problems.  PEACE and security would be nice.  Not frequently feeling like we're in crisis mode dealing with problems would be nice.

Off to wash and dry yet another batch of towels.

I Want To Crawl Out of My Skin

I just read here, after I googled it, that other people have had something similar, on atypical antipsychotics.

This has happened to me noticeably twice now, within an hour or two of taking my nightly meds (Lamictal & Seroquel; I'm supposed to take Lamictal in the morning but I always forget.)

I start wriggling around almost frantically; the sensation of wanting to crawl out of your own skin is quite awful and difficult to describe.  You feel  a very strong urge to get out of your skin (and for me, the left leg is particularly worse than everywhere else.)  You HAVE to wriggle, writhe, and otherwise move, because not doing so feels unbearable.

This sensation is so much worse in my left leg, that you feel not exactly a loathing for it, but you quite dislike it as a result of the distress it is causing you.  This distress, this crawling out of your skin sensation/desire, makes you want to leave your containment within your skin behind, especially of the left leg for me.

Now, I don't LITERALLY want to get rid of my skin as that would be, um, inadvisable, dangerous, deadly, etc. not to mention horrifically painful, and at least a little bit insane, or psychotic.

However, I can't emphasize enough how horrid it feels to feel like your body is something distressing, or like some part of your body is, or whatever.  I mean, I know most every health problem is unpleasant, but what I'm talking about is feeling like your body or parts thereof are to a degree separate from your self, from the whole of you, and that they are something it feels like you would like to have some distance from, if only for a time.  I'm not explaining this well, I know I'm not too fond of my head when I have a migraine, but there's not even a slight sense of otherness or alienness, alienation from your own body or parts, that there is with this.

The people at the link above say that the feeling is because of the intense urge to move, but for me it feels the other way around; the crawling out of your skin desire is what's causing the urge, the compulsion, the body's DEMAND to move.  Although I can see that the demand to move also contributes to want to crawl out of your skin, and thus shake the distress off.  The distress feels like the confinement of your skin is exacerbating the distress, and the distress is exacerbating the feeling of being confined by your skin.

Thank heaven it goes away within the hours, but oh is this feeling horrible!