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

Sunday, February 27, 2011

Why-and rambling

Michal asked why touching is a big deal if I don't like it. The answer took a while, but there are a few.  One is that it is not normal to hate and fear touch.  And while I don't need to be (and of course nobody is) normal in everything, There are things I choose to not care about.  Touch, however, has a few things that make it worth talking about at least.  One is that it is inevitable.  I am going to be touched.  Sometimes accidentally, sometimes because it is socially the normal thing to happen and so nobody is going to expect that I hate it, sometimes because it is necessary.  Asthma is no fun and has involved a lot of having my lungs listened to.  Before it was clearly asthma, between it and whooping cough, I still have plenty of symptoms of infection so I also had to go through frequent checks of lymph nodes, etc.  In fact, one exam I was sent for a chest xray to "be sure".  I assumed this was because of pneumonia, but later based on the description he gave of my strange lymph nodes I was actually being checked for lymphoma. Hopefully I never develop another medical problem, but if I do what if I'm not ask lucky and the exams are more involved?  I can barely stand any physical exam that involves actual contact with my skin.  In the same way about 18 months ago a girl I grew up with died from breast cancer.  I'm not able to tolerate self-exams, and I have some risk factors.  Again, touch is important.

Mostly though there are some lines (admittedly in sand) that I've drawn.  This falls on the side of the line that has the label "Things abuse will not take from me".  Dr Mind knows this so although I sounded like this is him being very pushy he was pulling from previous discussions, although long-ago ones.  There are things I'm not willing, at least now, to consider trying to fix.  There are also things that are fixed "well enough".  Touch probably can end in that category, but he is correct that being hugged should not be tolerated but good.  It also is true that if I don't make this ok for myself someday my very not tiny niece will be big enough (she's already huge) that she won't be safe and I won't love her touch.  It's happened with other kids I've loved, and then it's one more time touch is tolerated, and sad.

Mostly though it's that anger, that "how dare this be taken from me?" and the need to take back things that are so basic.  This has been harder so lower on the list of what I was interested in, but I think Dr. Mind is feeling a need to get me headed some direction.  Although I started my own direction that will come first because I finally started talking about my anger at the new illness and what the last months have been like, I also have not done much work on the goals I have set for myself in counseling in a long time.  Which happens sometimes when I have to deal with what life is currently handing me.  But I also have to move on.  I've avoided a lot of work in a lot of sessions lately because I don't feel motivated.  And that's fine.  But it also can become a dangerous issue where nothing happens.  That was where things wound up with the therapist before Dr. Mind; as I got more relaxed and closer to her I did less and less work until I was just visiting a lot more than I was trying to cope, and it turned into my having this false sense of wellness and control of my illness. I have a lot more of that now, but back then?  Not so much.  Yet I remember telling Dr. Mind when I met him that I was very much under control, having no issues because I'd pretty much figured out how to live with the ongoing cycling, etc.  That was 2 months into this blog starting, so if you read from about Mach 1-June 1 2006 (not that any entries) you can see the change that came as Dr. Mind learned this was not true.  It also shows what happened when he believed me and so didn't really trust his own warning signals as I got sicker for some time.  The episode that followed wasn't his fault by any means, and he is the hero of much of it as it occurred partly because I was off meds because every time I'd take them a few days I'd start vomiting and stop, taking a couple days to stop vomiting and restart, then vomit again.  I was being treated for stomach ulcers and we couldn't get med levels because I couldn't keep them down 5 days.  When I went on disability in April 2006 it was partly so I could do whatever it took to keep meds down those 5 days and get levels.  When the levels came back I had started feeling even worse than I had been and was crying because I'd try to talk and the right words refused to come out. I noticed Dr. Mind watching me walk one night, and since I'd reach the point of crying when I couldn't talk that was beyond obvious.  He had called Dr. Brain several days before and told her I thought I was lithium toxic.  I think she thought this unlikely as it was so atypical of how lithium toxicity usually is (probably because I did have ulcers causing problems too) and yet she listened because those symptoms are of pretty bad toxicity.  So she had her staff watching for my labs and when they appeared she called me the minute she'd seen them and told me I was toxic and that Dr. Mind had caught it about 3 days before so she'd been eagerly waiting the labs.  Pretty much from that time on I had to face that I had come to believe I was better than I'd  been, way beter than I'd been, because I had quit working on dealing with having my illness, which was the stage I was at and needed to be at then.  I spent months that summer crying and crying as I learned to face my anger and sadness that had accumulated in 4 years of denail since I was diagnosed.  I learned how to work on topics for longer than my short attention span or courage would let me bring them up; before that my bipolar dealing had been from session to session, different every time so that I never really handled anything.  I needed someone to make me focus, to make me look at my life and illness and see the great holes and sadness that were there because of this disease.

And sometimes I still do.....Because avoiding dealing with pain is a natural reflex and although I've not totally had 4 months off, I have had 4 months off of parts of this.  It may not be totally time to move on, but it's time to think about it happening.  And the truth is I needed that reminder; I am fighting very hard to believe I'll ever be well again or even feel good again.  I know my dr. is trying as hard as possible, yet I'm still exhausted and still not feeling remotely like I was in October.  And there's no timeline for how long before we get there.  Not only does the asthma have to be controlled and any allergies controlled, I have to stop feeling so exhausted which we hope comes with better breathing and better sleep (and seems to maybe be improved the last week or so although yesterday I overdid just doing a little and I've paid today), but my immune system is haywire too and I need to also be healthy.  I have been sick so much lately I can't even count and that makes it all worse, but until the asthma is controlled and that all stabilizes there's nothing to do about it as there's no way to know if I get sick because I'm already a bit sick, or if my immune system is really screwed up by the steroids (not likely as it has happen on and off them), or if there's something else.  As I understand even blood counts don't give much information at this stage because of so many months of so much sickness.  Regardless, I think I need to start moving on from putting my life on hold waiting to feel better and start doing what I can to feel as good as I can the way it is.  I have to first deal though with the 14 angry thoughts that came between typing that phrase and this sentence.  I am not saying I'm accepting that i'll always feel bed.  I don't.  but I am trying to accept that waiting for this to be all better may take longer than I want it to.

And now I have to write many, many notes.  And sleep.  Because sleeping all day isn't enough.  Oh, and I guess I need to eat.  Goody.

Friday, February 25, 2011

Touching and other things

Easy stuff first:  I am proud to announce that after 2 hours of work my desk is again visible, my cord to plug in my laptop for network use can be found, and it turns out I do have a telephone.  This is good stuff.  I've been so insanely busy that I have had no time to sort papers and figure out what needed to go to the shred bin.  That turned into a mess so bad I told my boss today if I couldn't fix it I was going to take over someone else's desk.  I have no succeeded, which is fabulous.  I also forgot lunch and ate an embarrassing amount for supper.  Oh well. I haven't had much to eat in a week so maybe that was catching up.  I also got everyone scheduled for tomorrow, when I'm making up Monday and doing a training session with a new assistant (yay) and people actually let me schedule how I wanted to schedule.  Which is nothing short of a miracle.  Scheduling is NEVER that easy.  I put easy-going people on, but still.......And the best thing is as long as the trainee is there I don't have to do vitals.  Which is a great break as doing full vitals 5 times daily gets old.

There are ways things are getting a little better.  I seem to be doing ok without valium now, at least until the next med change.  I'm sleeping better with allergy covers on my bedding and am only exhausted 20 hours per day instead of 24.  I also seem to be reaching toward my routine; I was up at 5 twice this week, too sleepy to do what I used to do but awake, and today was up at 4:15 and was sleepy but did manage to pay a bunch of bills which really makes me feel good before I have to go to work.  I get anxious about "did I forget" unless I pay them as soon as possible.

On the other hand, Dr. Mind kind of freaked me out.  There are times he waits for a chance to attack with something that he knows is a huge deal that will take me a long time to work out but that I am ready for/need to approach.  This was one.  We were talking about touch and how I work in one of the only professions where touch is still a good thing, and after he said that I told him about being taught that as well as the positive effects of touch on pts and so I consciously try to touch every pt. at least once per session, beyond the clinical touching that doesn't matter.   I should have known to watch it.  But I was led into that one, and he then stopped and talked about how not to be offended but it's something to think about, that I'm a person too and need touch and where do I get it.

I couldn't answer much then.  I've thought nonstop since though as he probably anticipated I would, and the answer is just sad.  At the time I said something about my mother and sister hug me, and the baby is a big thing b/c she can touch me and it's ok, and that otherwise my weighted blanket substitutes.  Which is hugely true.  But the more I thought the more I realized that I wasn't so accurate.  I love cuddling my niece.  I'm ok if my mother or sister hug me; I don't like it.  Aside from my niece the only really enjoyable touch I get is snuggling with my cats.  I'm thinking that's not a very positive thing........I might be human and need touch but the truth is that unless it's touch I initiated that I hate it and even then sometimes I hate it but do it because it's what I believe in doing as a therapist.  In my life, it is too hard.  I feel safe-ish with my mother and sister but not really.  I think I know why but need to think more.  But mostly, I hate being touched.  I can't think of a situation where I'm ok with someone touching me, even when it's clearly with my permission like in a medical setting.  Dr. Body tries really hard to keep things safe, rarely touching me except through clothes even if he normally touch skin.  If he has to he's very careful.  He also lets me avoid a lot of things that are touches that go too far, like tongue depressors.  I can't remember the last time he used one; I think I had strep.  And even then I've had strep and he's clinically diagnosed it rather than making me handle a strep test.  Which I will forever be grateful for.  But then I am thinking, ok, so what?  In one sense big deal.  I already made decisions that this is not an area I have a ton of desire to fix.  It's just so many memories wrapped up in so much pain.  Yet at the same time it is unreasonable to expect to go through life with nobody ever touching me.  There's a time coming fairly soon where I'll be the patient-first to the surgeon who repairs my ankle, then to anyone providing post-surgical care which may be a bit more complex thanks to MAOIs, asthma, anesthesia and the fact that I already have a history of not waking easily for anesthesia add up to since I believe what I'm having done is often an overnight I'm assuming it will be.  And there will be casting/bracing that will change with time, and then therapists who will have to do a lot of touch to help it heal.  This rehab as I understand it especially at the beginning will involve a lot of them stretching and moving and treating pain because it will be some time before I'm doing a ton with it myself.  I need more information but from what I understand I'll have quite a while with very limited use.  I'm helping this some by planning to try to get a PT I used to work with and respect greatly to take me as her personal pt. because my last PT experience was just not good and it's hard to trust someone with the rehab that I know is vital for this thing to heal.  There are 3 levels of this surgery (different versions of the surgery but 3 grades of repair; the version I'm having is a little more intense but nothing like level 2 or the AWFUL level 3).  I want it rehabbed right.  Which means touching.

If'I am honest any situation that I know I"m going to be touched is very anxiety provoking.  In 2 weeks I have a day of gynecologist followed by ankle doctor.  I find I dread both equally because both are going to touch me.  That's interesting as I thought the gynecologist was the worst thing EVER until I realized this, but apparently on some level all touch that is potentially threatening is bad touch. And by potentially threatening I mean anything that I don't feel is totally acceptable, like touching my arm while I am wearing at least 2 layers, preferably a winter coat.  And truly that is the only touch I don't hate.  I need 2 inches of bulk before touch is ok.

I think I have a problem............We'll fix it, somehow, but I never realized how much of an issue this is.  I know where he got the idea from, ok I did and then it left my brain; I'm tired, but he's going to get a surprise when he next sees me.  Because somehow this has to improve.  Touch bugs me so much that i'm noticing that as I get used to patches again I have to right with myself to not take it off early because it starts to bug me after 10-12 hours.  I had that issue at first, but got so that as long as they were in the right places I was ok.  No longer.

I'm falling asleep and haven't even had meds.


Thursday, February 24, 2011

I don't think this was in my yearbook aspirations

I don't even know which to pick.......

-I just got very frustrated and grumbled "I hate this brand of lithium", indicating I have now developed a preference for a brand of generic lithium pills.  (I went to a different pharmacy and even though they are divided they are nearly impossible to snap in half.  And my pill snapper is not in reach and therefore doesn't exist).  Yet really?  Not only do I have a strong preference for one form of lithium over another, do I know precisely what lithium level makes me feel good and which makes me sicker than a dog who ingested too much lithium, but now I apparently care who manufactures it.

-Dr. Mind is not a specialist in bipolar, but he did have experience with it when he started treating me.  Success with me seems to cause you to gain a reputation as good with hard patients and also leads to more bipolar pts.  I've known this for a long time, that after some of the techniques he developed to help me worked so well he started getting more referrals for bipolar/difficult to treat patients.  And my doctors actually refer among one another on the basis of "hey, you helped Jen, you must be good".  It's been humorous to see this little net develop, but it has and it has been because of me.  Apparently I am/was so hard to stabilize that I'm kind of the measuring tape.  Which really makes me laugh.  But anyway, Dr. Mind told me today that he was talking to someone this week about whether they might be bipolar, and one of the objections of the family was "but it changes so FAST".  Dr. Mind said that there were other times during this session that he was thinking of me, but that when he heard that he said "well, I treat one person who changes so fast I can watch it happen several times in an hour".  The person is now pursuing definitive diagnosis of bipolar, Jen style.  I used to see a term "ultra-rapid cycling".  It's not a medically accepted term but a generally accepted one.  For some reason I hated it.  I don't really know why now other than it just didn't describe the hell that was my life at that time.  I knew it was a term that applied to me, and I knew my cycling was so rapid it was beyond most descriptions, but I felt like it was a competitive term, like "rapid cycling is one thing but I ULTRA rapid cycle".  And it wasn't until I got to the point that I understand I often cycle ever 3-5 minutes, really even to some extent when I'm stable, that I got it, that it's not a competition but that it is nearly impossible to describe.  Dr. Mind years ago as he was first able to see it happen tried to describe it to me and still sometimes will tell me what little thing he saw as my mood changed, but it wasn't until he made an effort to help me see how fast I changed that I really understood my own illness and why I was so hard to treat (beyond the allergies to meds).  Because even as he would take a moment to tell me about a change, whether it was smiles to frowning, a change in my eyes, often my posture, a change from fidgeting and wiggling to sitting upright and still, or sometimes even I'd be laughing and my laugh changed.  That happened a lot in fact, still does, but now I hear it.  It's hard to explain, even if you've seen someone rapid cycle before because I can go through a mood every minute or two.  I'm trying to remember, I know once Dr. Mind tried to count but without making it some big thing so that he wasn't very focused on it.  Even then I want to say 30 changes in like 40 minutes? It's not that bad now, most of the time, but it is helpful when trying to explain why I often seem to have multiple opinions or "overthink" things; I see them from 10 angles in 10 minutes.  In the same way back in college my roommates used to laugh at me because they thought I was just crazy smart because we'd be talking and I'd say something that made no sense to them and then 3-4 conversational steps later they'd catch up and it would be funny.  It wasn't that I was smart, it was that my brain was thinking so fast at those times that I just got ahead and didn't know it.  Now I monitor where OTHER people are in a conversation and say fewer strange things, but still, I am now the posterchild for hard patients AND the ultimate description of extreme rapid cycling.  Go me!  (Actually I'm glad.  Doctors that understood the rapid cycling is how I finally got diagnosed and an explanation was given of how I could have severe bipolar and work.  A protocol for rapid cyclers was my first real treatment intended for bipolar, and while it wound up being something I didn't tolerate well it started me on the path to success; 2/3 meds were with me for years; I weaned off of one of those wow 3 years ago now after Seroquel XR was clearly successful all by itself, but for the intervening years that med (depakote) was a huge  reason I made it.

And now I must sleep or I won't have the energy to finish my paperwork in the morning.  I just can't tonight.  I feel like I'll be asleep in about 3 minutes at this rate........

And now I'm a criminal

It was accidental.  Really.  I saw "free advertising for local something" on a paper, thought "good, worm bedding" (see, it's all about the worms) and grabbed a few.  Later I grabbed another.   Which is when I was charged for it.  Turns out it's free advertising, not free purchasing.  So I shoplifted today.  I feel terrible about it, but I truly didn't know.......Ooops.

Dr. Mind left me thinking.   More to come on that; I haven't eaten supper yet.  I don't know what I want but I have to eat something.  I hate not knowing.  I think I prefer food cravings to guesswork.  Guesswork means I'm eating eggs.  Nothing wrong with eggs, I just eat a lot of them.


Wormie Wednesday (aka Thursday morning)

Wednesday is worm feeding day around here.  And because you wind up feeling like these worms are pets (they are, after all, totally dependent on my haphazard because I have no idea what I'm doing) care.  Today I have pride and sadness. And confusion.

The pride is that all the food from last week is gone.  It wasn't just 2 days ago when I checked and I thought I had overfed from the beginning.  Also, the worms on top look great.  I also got rid of the few insects I had (normal, not as bad as it sounds).

My bottom worms aren't doing so well.  I don't know what is going on but I've killed a bunch and there aren't many there.  this may mean they are just done with that bin since it started as compost mainly anyway.  I'm hoping this is true and emptying it this weekend and moving what's there up and starting over.  It's just so sad to kill them.  I still have hundreds, but there are a lot no longer with us.  And worms though they are, they are my responsibility.....

Anyway, gotta get ready for work.  Fast, fast day today as I've got a dr. appointment and the weather is supposed to get bad going toward the dr.


Tuesday, February 22, 2011

Some things I still don't know

I am gradually restarting my psych meds.  My morning meds, which do not contain much in the line of psychotropics except Nuvigil and that's my first choice med for getting better since it helps me wake up.  I hate this process.  I've done it too slowly and paid and I've gone too fast and paid.  It's so hard because nobody can really tell me; I have to go by what my stomach can handle.  The morning meds are easy:  synthroid which has no side effects I have ever noticed unless my dose was wrong; Nuvigil which is a no-brainer; Nexium (good for the stomach); the kidney med that only Julia will have heard of and which also is very neutral. Oh, and my laxative which I need to get up and remove from my pillbox before repeating this morning's error. Then about 2 hours after I'm up I take a Klonopin.

At night I take 2 Klonopins (an easy decision to resume when in withdrawl); 2 Seroquel plus PRN sometimes but not right now; 1 1/2 lithium; Singulair (not hard to decide since breathing is good and it doesn't have side effects); some amount of valium since the steroids; and a handful of vitamins.  Oh, and spiriva and symbicort (which is also in the AM).  My patch goes on in the AM or PM depending on things like did it itch and get removed early; did I wear one for 2 days because I'm a bit agitated, etc.

So last night we started.  1 Seroquel, Singulair, both klonopin, spiriva, symbicort.  Tonight I debated and decided since my stomach is still unhappy and lithium causes nausea to start it really slowly, so I took 1/2 of it, 1 Seroquel, both Klonopin, Spiriva, and symbicort.   I'm planning to start a patch tomorrow morning as it's been off too long.  (In another way of thinking I'm only about 10 days from eating cheese...but I'd be inpatient and somehow I don't remember liking their cheese.  And since all they fed me was grilled cheese I knew it well).

It's so hard as I have to let my stomach adjust, I don't want to knock myself totally out, and yet I need the meds.  My tears come more and more easily the longer I wait for a whole dose of Seroquel and some antidepressant.  But I've thrown everything back in immediately before and gotten sick from it.  The Klonopin gets precedence because the withdrawl sx suck.  I hate every time this happens, and while I'm grateful to Dr. Body for giving me Zofran to prevent this usually, having found the germs that beat Zofran I can say the process is no more fun than it used to be.

This post has more correctly spelled underlined words than any I have ever posted before I think.

Monday, February 21, 2011

Tears, finally

Dr. Body took the time to send me an email at 9 pm just to tell me that if he could make things better for me he would.  Which has turned me into an emotional mess.  Which is also the result of being ripped off my psych meds 2 days ago.  I started them back today, but only part because if I restart all the Seroquel I will sleep too much, lithium is best kept for another day or two because it can be hard on the stomach, and hopefully I won't need valium although we'll see on that as the steroid made me pretty agitated.  Valium gets about 45 minutes before I give in though.

I wish we knew what was wrong specifically or had a clue how to fix it without causing new problems.  I'd give in and take a disability leave.  It would suck, but I'd do it.  However, there's nothing that can be done more than we're doing now and while my bipolar is not fun lately it's not bad enough to need time off.  Medically I do but there's no reason.  Loss of all immune function along with a hyperactive immune system doesn't do much.

I feel rotten though.  Not physically, although that's not great either, but emotionally I've had it.  One thing after another.  I'm realizing that my ankle surgery which I'd planned for next summer isn't happening; I'd kind of thought I'd be going into that time with good attendance, good work record, etc.  And instead I have the worst attendance in the world despite wanting to.

I'm just so tired of being sick.  I'm tired of spending  my life working or right here, in bed.  Almost 4 months we've been fighting with the results of whooping cough and in that time I've had stomach flu twice/three times? although this was the most severe by far.  I've had random fevers.  I have thrush, a side effect of my steroid inhaler.  I'm tired.  I no longer remember what it felt like to feel good, to get up an enjoy life for a few hours at 4 am, to have fun in my life.  I've been barely making it for so long now that it's starting to feel like that's how it always has been.  Because for so long it was, and then I really believed that part was over.  I was reading my blog from just a few weeks before I got whooping cough, when the germs were already in my body but I didn't know it, and Dr. Brain said that I was the best I had ever been.  And then my life exploded.

Dr. Mind will tell me it has been so much worse, and it has, and I'm in no position to judge right now because I'm not medicated, but I don't know how to handle one more physical thing.  Want to feel guilt?  Know that you are so freaking complicated that you are on a list that if you have problems while your doctor is recovering from surgery she will be consulted at home and then talk to the covering doctor to make sure nothing is messed up due to not knowing me.  That's right, she can't even get a few weeks to heal without potentially having to deal with me.  And she's not the only one.....Dr. Mind has come in sick to see only me more than once.  In fact he told me the other day that I'm no longer his most acutely ill pt.  I think this is supposed to be a good thing and all I can think is after 5 years???

I'm having a major pity party here tonight.   I'm just done with feeling bad and my body doesn't care what I want.

A few days of pyschotropics should help.........


I made it staying home all night and today. The vomiting has stopped.  The feeling crummy hasn't.  I took some Zofran again, and while it stayed in and has helped the nausea it has side effects I hate.  Headaches, which can be lived with, but the worst it that I feel like I'm freezing cold.  I always forget and assume i have a fever, which i did this morning, but which tylenol cured.  But the freezing cold thing lasts a long time and is not fun.  However it has let me get fluids in which is the most important.

The challenge now is that I have to get some paperwork done and then take meds and actually sleep tonight.  Without meds there wasn't much of that to be had last night and I'm tired.  I've also not napped today.  But I have to get meds in.  Not only do I have some withdrawl signs already my asthma is becoming angry. So tonight definetely means inhalers, beginning psych meds, and asthma pills.

I should not go back to work tomorrow.  I'm not ready.  The fact that I've eaten 2 pieces of toast since Saturday says a lot about that.  But I'm also too busy and feel too guilty about missing work AGAIN so back I'll go, even knowing that Dr. Body would have kept me home another day.

I am just so incredibly tired.  Tired of being tired, tired of getting sick constantly because my immune system is worn out, tired of missing work, tired of how that makes me feel and look.  Tired of working weekends, especially when it means disrupting plans I already had.  It feels like things are never going to be right again.

Sunday, February 20, 2011

Maybe, maybe, maybe

Two hours ago I started getting ready to go to the ER for fluids.  I had not kept anything down in 24 hours, I hadn't peed in so long I couldn't remember, and I couldn't keep the medication to keep me from vomiting down. I then got so tired and achy i decided to lay down just a little bit and see if I could keep 2 oz. of gatorade down, one last time.  I've not been so good at keeping to tiny amounts of fluids because I've been so very thirsty.  I was controlling what I took in, but apparently not enough.  I was able to follow that with 2 oz. of coke, and later with a few oz. of ginger tea.  I just drank another oz. of coke or so and seem to be doing ok,  The signs of signficant dehydration are decreasing, and I'm hoping that I can sleep through the night and if I'm still sick in the morning I'll see what Dr. Body has to say.  I'm also going to take some klonopin, even though it may make me throw up, because I now know that if I don't get that in withdrawl starts and that is too close to the symptoms I have now to sort it out.

Obviously I'll be home from work sick AGAIN.  Which means I won't be going to see my niece this weekend because I'll be working.  Which just stinks.  I'm so tired of working weekends because of being sick.  This weekend was supposed to be about having time off and resting for 2 days, something I've not had in so long I can't remember. It didn't turn out quite that way......

Oh well.  I'm not in the ER.  I could be at some point still, but for the moment it looks positive.  (This makes me realize I can't take klonopin as I need to be able to get myself to the ER if I am sick again).

Now if I can just sleep....

Not fair

I have reached the absolute end of my patience.  I have stomach flu--AGAIN.  I think the last time was about 3 or 4 weeks ago.  This one is much, much worse and I have not even held down fluids today.  In fact I keep throwing up zofran, an anti-nausea med I have simply because dehydration is such a bad thing for me and some of my meds, but it has to stay down to work, of course.  I have paramaters for when I  need to go get IV fluids and I suspect that time will come soon if I don't keep something down soon.  I'm to go if my heartrate is 110 consistently and it's 100-120 right now.  If I stay still and it doesn't come down by 6 I'm going because I am not really wanting to be in the ER all night long.

The worst part is that one of my PRN staff is ready start training tomorrow.  I want to go to go work SOOOOOOOOOO badly.  However it's hard to work if you vomit if you move or (in the last awful epidsode) something touches your abdomen (my cat, who I moved to my chest but all it took was a touch). The poor things.  They both know something is wrong and have (sadly) enough experience with my vomiting years ago during a 6 month lithium toxicity to know when to stay back, but the things they know to do to make me feel better just make me sicker (cuddling, seeking attention).

Oh, and when do I start being able to use vacation days?  Tuesday.  Of course.


Friday, February 18, 2011

What a day

I am so tired.  Every so often days make my head spin and today was one.  One of my families is inexplicably angry that we didn't produce a piece of equipment in 30 seconds when they didn't even really WANT it when I initiated the process.  They've called and yelled a few times and refused to let me come treat their mom today.  Tine, 60 miles of driving avoided.  Then all these other people weren't available for various reasons.  I wound up with a totally different day than I planned.  I drove a long, long way to have someone I couldn't treat because of complications and then when I called the dr's office the nurse was using that "I've very patient, you are very stupid" voice telling me how to call for a back-up doctor.  Finally I explained (again) that I'm a therapist and don't usually get referrals and she said "oh, I thought you were from the nursing home."  I never said a word about a nursing home.....So finally she realized she had to take care of things there.  My next pt. is agreeing to her treatment but thinks it is stupid and forgets all the reasons she needs it between sessions.  This is slowing things drastically.  And then the next one had a caregiver who got very mad that I wouldn't take over care-giving while I was there.  I'm not allowed.  I can't be responsible for making medical decisions for a patient deemed to require 24 hour care.  If you do not have dementia and are sick and can't tell me not to call an ambulance that's different but when you can't ever make that decision someone else has to.  So I heard a lot of vulgarities.  My last patient was sweet but lots of sad stuff there.

And I have thrush.  It goes with inhaled steroids and I am prone to yeast everywhere so I should have asked for a preemptory script but I have followed the instructions to rinse after each use.  Guess not well enough.  I see Dr. Body in a few days so hopefully can squirrel away some diflucan.

Did I tell you about the crazy psychiatrist?  Dr. Brain is having surgery and will be out for a month.  One of my big fears is that I will have a bad asthma attack while working and be unable to express my preferences prior to treatment, then within minutes I'll likely be very manic/psychotic.  At that point nobody cares what I want.  I'm working on legal documents to help with this; I'll talk about them later as they may help others sometime.  But what I do not want is to be put on the psych unit at the hospital that partially employs me.  My co-workers would find out easily and accidentally where I was just using the computer system that is in place for finding people who go to the hospital making them hard to reach at home.  Plus although I do not want to ever be hospitalized again the chances of that weren't great before and are about none now unless we get awesome control of the asthma with the next drug.  It feels like we are working against a clock as one cold or exposure to the wrong chemical for too long and I'm in the ER.  If I must be hospitalized and it is likely that I will be at some point (although we have made it for 4 months now.  Not pleasant months, but out of the hospital), then I want to be where I was before.  I hated it there but at the same time there are distinct benefits:  anonymity; it's tiny; the psych unit is the only place that I will feel like I can relax and not have to 'behave" (that was the biggest relief in 09; I could cry for hours and that was ok.) and I am known there.  So anyway, we decided it made sense to have a local psychiatrist aware of my situation and able to help.  Dr. Brain knew someone or knew of her, and so I called there.  I explained everything and was told that I couldn't see the dr. without 2-3 diagnostic therapy sessions with psychologits.  I explained that I have a diagnosis, I have a psychologist, I even have a psychiatrist and that all I need is someone who has met me and can say that they have heard me express my concerns while well and able to make decisions and that they support getting me (via family or ambulance if I'm unsafe) to Cleveland Clinic.  They positively refused.  And so I ultimately wound up having to call Dr. Brain and she agreed this was a waste of time and money and so we cancelled and a different plan is in place.  But really, I thought that was the dumbest process ever.  I understand if you've never been treated for a psych issue, but when I'm able to give you a list of diagnoses, 45 meds that have been trialed, a specific reason for wanting nothing but a consult, you are NOT treating me beyond giving me a shot of haldol or whatever if I am out of control in the ER, I think we could skip that.  I honestly think this is how she avoids the severely mentally ill.  I've seen other such schemes before, including the family doctor allegedly 'the best" in this county who refused to see me based on my med list which included an antipsychotic.  I understand that some doctors specialize in this stuff and that those are the best for me, but it makes me so angry when someone refuses to see me for who I am or even meet me to find out who I am and how I manage my illness but instead rejects me because of a few words.  Actually it's usually only 2:  "bipolar" and "[whatever antipsychotic]" I'm taking.  Without the antipsychotics I got that less but I need that med a lot more than I need jerks in my life.

I'm falling asleep sitting up and haven't even had meds.  More tomorrow.

Thursday, February 17, 2011

And the winner is:

um, whoever guessed around $5000.  I still have to get a few more things but I'm over $4000 already .  My medial expenses tend to be about $10000 out of pocket annually.  For 2010 it's going to be much closer to $12000 I believe.Not sure yet as I have a good bit of math and sorting to do, but it's huge amount.  Nice thing is that my take refund will be awesome, which is good since I have a number of things I need done and the more I get as a refund the more I will get done.

I'm tired tonight.  I zoomed around and saw 4 people, except one told me no after telling me yes and I drove to her home (ugh) and then went up and did 2 errands before seeing Dr. Mind.  2 quick errands exhausted me totally.  So I've had my meds and soon should be asleep so I can do notes in the morning.  Just 1 1/2, won't be bad as long as I don't sleep until time to go.  No time for that tomorrow.

Anyway, I am home and on resting restriction this weekend so I will catch you all up then.

Guessing game

I just started totally up my prescription costs for 2010 for taxes.  I know a ballpark but still have room for surprises. Let's see you you all do.  I'm putting up a poll for my total out of pocket prescription expenses.  Take a guess.

Tuesday, February 15, 2011

Warning if you are squeamish about worms

(If you are squeamish, don't read, but this is safe:  I'm feeling a bit better.  I don't think I'm going to wind up succeeding on this main drug, but at least the mania is receding a bit.  I'm sleeping slightly better with the valium dose figured out.  I'm learning what to watch for.  Tonight I had used my rescue inhaler (aka torture device from hell) twice so I knew falling asleep will be hard so I took more valium.  Generally I take 1/4 of a pill and if that is not working in 30-45 minutes I take another 1/4.  I've never needed more.  So at least I fee in control of that again which helps a lot.)  Squeamish people, stop here.


A couple months ago I got a check from my aunt.  She sends me money occasionally and usually I donate it to charity because I don't want her to feel she has to give me money; she's retired and it is surely not freely laying around.  But this one instructed me to spend it on something I really want.

Every summer my mother and I grow a garden.  By this I mean my mom grows, I help pick and can.  About a year ago I got really insterested composting but since I needed to do it inside focused on vermiform composting. To do this you have a stack of several trays with mesh bottoms and you put the food in the top bin, chopped up and the worms eat their way through the trays and move upward when they have finished the current bottom tray.  At that point, and I'm not totally clear on how you know this has occurred and need to read more you have a tray of "worm castings" (aka poop from the veggies, dryer lint (not kidding), hair (not kidding), eggshells, papers, and on and on that you've fed them.  That becomes your fertilizer.

During those days I was off for my breathing test/med adjustment I felt too lousy to do much else so I did a lot of internet shopping for things I'd put off buying out of laziness.  So I got my composter and worms.  The worms arrived on a bitter cold day and were in a sheltered from wind up not warm room for many hours.  We were sure they'd be dead.  I decided to set it up and per the instructions give the worms a chance as they were sent dehydrated to help prevent freezing and even dead looking worms can be alive.  So after things were set up I proceeded to learn the difficulty in dumping 1000 worms out of a cloth bag.  They were all alive and while I do not get grossed out easily the heap of them about did me in.  Fortunately I now don't have to see them anymore, or at least no en masse.  You can, however, hear them eating which a little odd.

So this last week has involved a lot of timid trips to the basement to check them.  I've killed a few, not sure how yet.  To make it up I just saved one from drowning in the run-off collector.  With my bare fingers.  Touching worms hasn't ever bothered me but something about the quantity and the hearing them is weird.

Yet I'm learning that you rapidly learn to love the worms.  I could tell this talking to people and reading about this.  It's true.  I have no idea why you get attached except that they are relying on you to take care of them, but it's like 1000 rather creepy little pets that take almost no time, unless like me you can't stand to not know what is happening.

Saturday, February 12, 2011

Still here

We're praying that the worst is over.  I finally slept last night without all the sedation and I slept 8 hours.

The last few days have been very hard.  For one thing I went into withdrawl from Klonopin because I didn't know how dependent my body is on the high dose it is used to, and I had cut that dose when I started using valium, thinking the valium would replace it.  It did not.  So I had one day of feeling quite lousy and then I got back on it but have still had some symptoms lingering the last few days.  That did not help anything, and when Dr. Brain did not answer that as well as all the questions that might have prevented it I got pretty upset.  I was stating it as anger at her, but really I'm just angry. This is so unfair.  So very, very unfair.

It's a lot to deal with, feeling awful in a way that you know you can successfully avoid with your meds except that you can't just use those meds anymore and have it all be happy, even though for years you worked to find the meds that didn't have to be changed every month or so, but having no choice because of another illness.  Emotionally this really is hard; I thought that I had fought my fight and that I knew how to be ok.  I was wrong; I've always known one struggle doesn't mean you are done with them, but I thought the chances that I would have something that makes it hard to handle my bipolar treatment  were slim.  So not only is my mood flying everywhere because it's so out of whack, but I'm also dealing with some challenging stuff.  I'm very angry and frustrated that this has to be part of my life and that there is not one single thing we can do to make the transitions easier.  I know now of a few things that will help in emergency situations and I think the pre-emptive admission is just off the table and if I have a reaction to emergency/last resort (steroid) asthma drugs then I will go to the psych unit.  Which I hate the thought of, yet I mainly feel great relief because I realized I will feel safer there than anywhere that I am  

This feels something like when I had to go off my antidepressant last year.  It was making the right decision for my health and a very wrong decision for my well-being at the moment.  Dr. Brain assures me that I will make it through this and will be stable.  I am trying to trust that.  But it is so incredibly hard to make yourself feel like this, and it results in feeling like the desperate solution is to quit the breathing meds although I know that won't help.  So I won't, and instead I will just keep on trying med after med until we figure out what is best for me.  That truly is the best approach here and I'm aware of that but it also means that I have to hang in there with this for some time possibly.  And it's hard enough to feel bad for one reason (asthma) but when asthma and mixed episode combine it gets really ugly.  Especially when I'm reaching the point on the current med that I suspect we'll have to change to another, unknowns starting all over agin, mixed episode probably still quite present, and breathing still uncomfortable.

I think I've written before how hard it is for me that I have made gains in the last year and a half that have meant I did things for fun, I cooked regularly, I was keeping my house clean, etc.  All that is gone.  I kind of know that it will come back, but in the meantime I can't do things I want to because even with the mania the fatigue is so great that I can do little but sit.   I have done so very little that I have broken my promise to my ankle dr; one of the things that makes it ok to wait for surgery was my promise to keep it well exercised.  Since I've been exerciseless for so long I have now atrophed the ankle enough to need a new brace in a smaller size.  Which again just annoys me because it is one more thing I was doing well with and now can't.  Until the asthma is better I am fairly sure I'm not even supposed to exercise too much because every attack is just a time to hope it's controlled enough.

The good thing is that Dr. Brain didn't think I was that bad today.  So perhaps the sleep helped, perhaps the sedatives hid it, perhaps I did out of confusion about what was going on with her.  That's a big change from 2 days ago when Dr. Mind was concerned.  Perhaps my body is adjusting a bit.  We'll have to see in a few days more.  But I did get a break from the worst of the mixed episode today, although I do not feel in a good place.  We've all agreed I should be increasing my therapy sessions and yet I can't handle doing that right now.  That's the big problem with working so far from Dr. Mind; it's very hard to get to see him extra without wearing myself out.  I'm kind of hoping my sleep will level out with the valium (which I'm continuing since it works) and that I will start feeling less exhausted and more able to do things.

My new specialization in swallowing difficulties at work also contributes as I am working a lot harder on those evals and soon those treatments.  It's hard to have paperwork take longer when I need it to be faster.  But we'll get there.  Or so they say.

Anyway, I haven't really eaten all day and I'm starting to be hungry so I'm going to go work on that and then get some sleep.  Hopefully I can rest a ton tomorrow and feel more ready for Monday.  We shall see.

Tuesday, February 08, 2011

not much

I'm managing my sleep better with teensy doses of valium.  It's imperfect but it is sleep and I got 7 hours last night which was amazing.  I actually let my boss know I"m too tired to finish evals tonight and may start the day from home tomorrow.  Which she was ok with.  I'm having a very busy week and am so, so tired, and have still had daily asthma attacks since the test last week, but they are getting better and my chest hurts less, and today i even had my full voice for a little bit.  My doctor added a med back on, so I'm now on 2 daily inhalers, a pill, and a rescue inhaler and still not controlled.  The test results are still not back, and once those come in I'm going to go in to the doctor to do some learning about the balancing act that is now my life.  He told me that we'll just keep trying meds until we figure out what is easiest to handle, because as long as I'm where I am and am just uncomfortable and not feeling great it's better to do that than to do the more drastic oral steroids, which would probably clear some of this faster and give the meds an easier time working but the mania/mixed stuff would be harder to handle.  He's right, even though this way is hard and I think part of our talk will be setting a deadline by which time it's breathe or oral steroids.  However, I suspect that this will not be appropriate until about July because as long as it's cold it is harder, and then it will be allergy season.  This is a crazy tightrope act, one I never considered.  I got used to knowing what this could happen with bipolar and I have a pretty good grasp on what the bad things that can happen with my type and history are as well as the positive outcomes we had every reason to believe would continue until the day I went into that home with the whooping cough.  The one truly amazing thing is that I have a history of having 4-6 severe sinus infections annually.  This is usually because without being able to use decongestants things start growing and my sinuses become cesspools.  This seems also to have had something to do with nursing homes even though I've been exposed to colds this year for sure.  Anyway, it has been a year now since the last sinus infection.  If I get a cold while I'm still having daily attacks I doubt I could manage it without oral steroids.Yet I've made it without any colds through almost the whole winter.

And with that my eyes are closing and the vlium gives me only a short time to fall asleep so goodnight hwiht my eyes already closed.

Sunday, February 06, 2011

Today is not 2007. Today is not 2007.

That last post had some parts that didn't make sense.  The problem was that I building up to my eventual understanding that I am in a mixed state, which is always true for me when bipolar stuff starts.  The simple definition of that (if you can say simple to something that is dreadful beyond words) is that I am both depressed and manic.  At this level it is just unpleasant and I would say I feel generally miserable but not horrible.  At it's worst, which won't happen now, I feel all the sadness and fatigue of depression along with the tears, wanting to die, hopelessness, and desire to hide from the world combined with extreme amounts of energy, the need to do, do, do and they must be big things to help burn that energy, racing thoughts and speech (both of which can become hard for even me to follow), insomnia that in the past (again when out of control which won't happen now because of Seroquel and much greater ability to control my moods with meds that didn't exist a few years ago) would mean days of no sleep and enormous doses of sedatives and sleeping medications to attempt to get any rest at all. Mixed episodes can be dangerous and I'll need to be careful to monitor my thinking and get help if needed (may be see Dr. Mind tomorrow or Tuesday if possible) because when very severely depressed like I was when admitted last year you can feel suicidal but often don't have the energy (in my case I wanted to die but was too sick to care enough to figure out how) to attempt it, whereas the mixed part makes you dangerous.   For now I just feel depressed and exhausted (which isn't from my moods but from sickness for so long) and agitated and I know my thinking is rushed and not extremely logical at times.  If things worsen obviously I'll be sure to get help immediately.  This used to be how I lived all the time, minus the asthma.  I was in a mixed episode pretty much for 6 years (longer than that but that was officially diagnosed years) continuously with variations in which end of the spectrum dominated (or they were equal as they are now) and how severe it was. Every time one happens now I fight fear even though I know that we have tools that just weren't available then.  This particular thing is feeling more mixed that I typically get now (usually now I can say one part is clearly worse) but I think that's because the meds are making me manic and normal human reactions to that are making me depressed which is the accelerated by bipolar.

So anyway, not handling all this so well.  It's hard to believe that it can be ok when I have intense memories of mixed episodes from the past.  During one I had actually managed to outlast extremely high doses of multiple sleeping pills plus huge doses of other sedatives and was sleeping a couple hours a day, maybe.  I got one wonderful night of sleep when Dr. Mind talked me through a relaxation exercise that helped so much he said he was considering if he could just let me keep sleeping at the end and work elsewhere if I fell completely asleep.  I slept that afternoon and night and then fought for 2 months more for sleep.  I would be desperately tired and unable to sleep.  Dr. Mind actually broke the cycle by coming up with some (now I see) riduculous reason to move all the furniture in my bedroom around.  It was, of course, extremely hard work that took days and nights and at the end I climbed into the bed and slept.  That's about when i got my first weighted blanket and the combination of total physical exhaustion and the blanket helped.  I didn't fully forgive Dr. Mind for about 6 months until I could admit that it was funny that he tricked me that way, but it worked.

And so is the valium i took a bit ago.  So goodnight.  I hope.

Did not expect that

So I've had 4 days in a row off.  I worked half a day yesterday.  And I have work some stuff to do today.  But I'm still very, very tired, I still don't feel good, I'm very wheezy again today (still from the testing I think), and I'm actually starting to feel bored?  This is 2 things.  One is agitation from the steroids.  The other is that I still can't be very active and am running out of things to entertain me while sitting here.  I've even worked on taxes.  Actually they are done except I have to gather some stuff for medical because that adds to a huge amount here.

I'm also becoming more and more convinced that the new med is messing with my appetite.  I wasn't eating great before, but I was eating.  Today, well I had a couple cookies with AM meds at 9 and I just now realized it's nearly 3 and that's all I've eaten. And I'm not hungry enough to want to get get food.

I think some is depression, which usually makes me not eat.  My body is in a state that is similar to depression and that typically makes me have symptoms, or at least thing I do.  I also still am not sleeping well with the med changes.  I can't fall asleep then can't wake up.  Not sure how that's going to work this week with my job.  I never can figure that out.

I want to sleep so much, but if I try it won't likely work.  However I think I'm going to atempt it; maybe that will at least help recoer a little rest.  First though time to find something to eat.  Fun.

Saturday, February 05, 2011


Today was a very tough day at work.  I can't really go into the details but someone who doesn't know about their terminal diagnosis and has been given weird reasons for that pain had a symptom that potentially can be serious and could mean a lot of bad things, and I had to calmly explain why an ER visit was needed, giving bland reasons when I know too well what the several really ugly possibilities are. And of course it was one of the patients you immediately want to do everything for.

I'm still very, very tired.  I'm hoping that tomorrow I'll really sleep during the day since I'll know nothing is planned at all.  The increased Seroquel is only sort of helping; I do sleep but it's not easy to get there no matter how tired I am, and getting up is painfully hard.  Seroquel levels out rapidly so I should know for sure in the next few days what the result is.  At the same time the Symbicort is sort of helping but I still had to use the dreaded rescue inhaler today, I still feel things are tight, and I still hurt.  However, some of this could be from the test still since I know my throat is still irritated and my throat has resumed the rough sounds that I had just recently started to get rid of from whopping cough.  Symbicort takes a few weeks on the full dose to really work so I have some waiting. There are just some effects I wish would start soon, like not feeling slightly short of breath.  My rescue inhaler doesn't fix that, which it should, but it's not the ideal rescue inhaler for me (and I have a request to try something else since it makes me so restless as well as not totally clearing symptoms), but between knowing that and knowing a dose now means more trouble sleeping I choose to feel a bit uncomfortable.  Once Dr. Body has my test results I'm going to make an appointment so I can ask a bunch of questions.  The main thing I know is that he is trying to be more aggressive quietly.  I didn't realize until tonight that he put me on the higher dose of symbicort.  I know this is partly because of how sick I've been and I suspect he figured if I could get some in the higher dose would help make up for the possibility of not fully handling it.  I want to know so much, but some of it I'll know more Monday.  I want to know how severe this is.  I want to know if now that we've had the test if there's much chance this is slow-to-resolve damage from whooping cough (in my heart I know that answer). I need to know things like what happens if I get a cold, because that's going to trigger bad things.  i want to know how to exercise, and why I'm not hungry anymore. Generally I want to know that we can make my life livable with this condition.  By livable I mean I want at least some control and I want to be able to be comfortable, to have energy for more than work, and to be able to sleep normally.

There's a whole other thing where I'm kind of annoyed with Dr. Brain, something that has almost never happened, but it makes me cry.  I see her next week and I hope she can make me feel better.  Right now my bipolar tendency to convince myself people I care about are mad at me when I have no idea why is in high gear.

I'm so grateful for these days off.  I haven't rested but I've had time to do some things I really needed to do.  I believe I'd explained that my company accidentally shorted me several thousand dollars.  Well, knowing money is coming has let me relax about money for the first time since my checks were first shorted.  So I got my haircut and FINALLY was able to find and buy a product for curly hair to control tangles.  My hair is falling out in huge clumps from being sick for so long (and here I cry as I just spent 3 years regrowing much greater hair loss after lithium toxicity and months of vomiting and my thyroid failing) and the clumps tie knots around the long curls.  Finally that is much, much more difficult for them with this stuff.  I've looked at some gardening things, and also found the best thing, if I can make it work.  I found an heirloom rose website that sells a rose with my niece's name.  I'm going to give one to her mom and grandma for mother's date, but I also want to get one to grow inside to try to have a blossom (or several) to be used in our family photo shoot.  I have an image of a little one holding a rose (obviously with the thorns off) and possibly some way to have all the women with an "Anne" rose.  (B and Julia since you know her real name you can go to heirloomroses.com and search her name and it's a gorgeous rose).  I have an email in to the company about how to do that; they won't ship them until mid-March and that would give me 6 weeks to get a bloom and I don't know if that's enough time or too much time.

I also did something I've wanted to do for about 2 years.  I am going to be an official vermiform composter.  That means that I have a composter coming that actually sits inside my home (basement or kitchen) and has these special worms that I buy (my come free) that eat through the things you usually compost, plus some things like corrugated cardboard, newspaper, shredded bills, etc. and produce the compost without odor or real effort.  All I have to do is collect my mother's compostable stuff and add it to mine every week or so and dump some food in every few days.  My aunt sent me a random "splurge on yourself" check and this was my choice.  Weird, but I'm excited to start.

And I have ordered every black top I can find that I think may make me look skinnier.  This is for the family photo shoot.  I figured I could order a bunch and then return what I don't like.  I have no idea what style will look right and feel comfortable so I'm just trying about 10 of them.  I also ordered a bathing suit (in 3 sizes) for vacation.  110 days until the ocean waves....

I'm sure I've spent the time doing other things, it seemed like there were a million details here lately, but those are big ones.  So many things I've just not been able to handle with time.  So much more to do......

Thursday, February 03, 2011

This could be easier

My doctor's response to my relief at the diagnosis was, I think, surprise.  I think he expected me to be upset, but I've had a long time to resign myself to this.  Plus the person who did the test was pretty honest that she was pretty sure from the start.  I made it a reasonable way into the test but with each dose of medication you took 5 breaths of it and then with another device you  breathe out and it measures how much comes out versus in, how quickly you breathe out, and then it stops if you cough.  You have to get a certain percentage of your baseline (before the med that makes it harder to breathe) twice to pass that level.  I think you have 5 tries to do so.  There were several that I kept almost failing.  I'd do ok on the first breath and then fail the next ones and pass on the last.  I finally said that I was really feeling it and she said that would probably be it and I barely, barely passed.  The next one she said she was pretty sure I'd be done.  And done I was; I couldn't even start to breathe out without coughing and wheezing.  By that point in the test I'd been coughing heavily for 2 hours and knew I wasn't getting stellar scores on anything, just passing.  So I was 100% sure early in the test that I would not be passing it. Not that anyone expected me to anyway.  I'm just glad to not have passed this test leaving us clueless.

Unfortunately I have been awake ALL DAY.  And I barely slept last night because I was scared.  I took a big dose of Seroquel, but even that should be working now and it's not.  I think we need a different rescue inhaler since the only difference all day was that I'd had it (and more Klonopin than usual trying to sleep) and the last time I used it I was up all night.  So in about 30 minutes I'll be emailing poor Dr. Body.  Again.  Favorite patient and all that.  So I'm tired.

But partly that's my little breakdown today.  I don't think I've written about this but last week I started reading more about asthma trying to find out more about this test I had, which is hard to find information on.  One of the things that hit home was that people who are really sick with asthma often don't eat, don't have an appetite and don't have the energy to prepare meals.  Which made me realize that I had not cooked since October.  I mean as in I had not made scrambled eggs, spaghetti, a hamburger, anything.  I had barely eaten microwave meals.  I think I've been living on cereal bars and peanut butter.  So I went to the grocery for the first time in about 5 months (I usually go only every 1-2 months and was due when I got sick) and got a bunch of stuff I remember Dr. Body suggesting years ago when I was too sick to eat healthily.  And I've cooked a few times this week, easy stuff but still I've had meat and vegetables or nuked something.  Today I did not eat much.  Probably mania as much as anything, but not good.  But that led to me realizing even more how little LIFE I've had in these months.  I've struggled to work, had to work most weekends b/c of taking days off during the week, worked at home on notes b/c I'm not thinking fast enough to do them with pts., and the past few weeks have been studying as well.  I have not even opened my sewing machine box since Christmas.  Which is really sad.

So I'm ready to do whatever it takes.  I'm working on some legal papers to take away my greatest fear:  That I will have an asthma attack one day requiring an ER trip, they'll give steroids which they'll have to, I'll flip out and won't be able to sign myself out to get to a preferred psych unit.  So I'm doing a durable power of attorney, a mental health living will, and that should give others the power to get me to safety.  I'm also doing a plain living will, using a thing called "Five Wishes" I strongly recommend.  It's very clear and gentle and precise and not legalize.  If you are in Ohio and like 7 other states you have to do an additional document, but it's an EXCELLENT living will.  I think I got them (my mother and I) for maybe $5 apiece that goes to the organization.  Do a search.  They're awesome.  Less so in Ohio but we're already going to a notary so who cares.

And after my evening meds I CAN breathe.  Which is so nice and hopefully breathing all night will make up for the little issue of stimulants.

I am slightly sleepy so that's a good thing.

Hopefully now that I've taken a good look at my life (and maybe will be feeling better) I'll be back to writing daily again.  I miss the blog.    And I still have several drafts to post eventually, plus what I've been doing instead of writing this week.


The happiest I've ever been to fail something.  I have asthma.  Details to follow in a few days after the pulmnologist sees it and sends it to my dr..  The test was exhausting but not horrible and I'm now ready to sleep for a long time.

More later.

I'm ready. I'm just awake

Tomorrow is my scary test. I dread it, yet I dread most of all the slight chance I'll pass. That sounds weird but if I pass then we have no clue what is wrong with me.  However, based on what dust and smoke have done in teh last 2 days I can't imagine not passing.

I can't remember if I took all my pills tonight.  I was distracted.  I have done what I can; I have a med list.  I have a note for the respiratory therapist explaining my fears and med reactions.  I have a of what my mother can hand out if needed and a sequence to do that.\

I have 2 evals I suspect will be sent late tomorrow and I don't care.  I know that's bad but I just don't right now. I'm too overwhelmed.  If I'm up in time send them great, if not they'll wait.  they're nearly done anyway.

I'm sort of falling asleep so I'm going to try that now.  More tomorrow sometime, depending how i feel.  My test is at 8 AM EST so please pray I'm doing ok with it if you're awake then. If I feel really good we'll try to play catch up tomorrow or Friday.  Get ready, you'll never believe what I have been reading all week rather than blogging.

Tuesday, February 01, 2011

Why only Team Jen should Treat Me

As you know I've been having a struggle with adding any specialists to my doctors because of trust issues, and then those were greatly increased following my bad experience at the big hospital.  Well, it gets worse.

I've been reflux meds for years.  I have had several duodenal ulcers, probably related to med use, so any side effect affecting my stomach was always treated carefully.  Last year after being on Nexium because I was very ill and a powdered form was used to neutralize my stomach acid to let meds in, then the pill was used to continue because it worked so much better.

I've been asked over and over if I had any symptoms of reflux as that can cause asthmatic coughing.  I kept saying it was totally controlled.  Then when I got sick I had a lot of reflux I blamed on sickness.  When it continued and was bad I let Dr. Body know.  Today I was instructed to double my dose of Nexium.  That's when I noticed that the reason I'd thought something seemed different was that when he was away and the script was refilled by another doctor based on a fax from the pharmacy, someone put in the wrong dose and I've been on half my usual dose for days.

So that's easily solved and sadly means we haven't found the miracle cure.

I'll write more this Thurs/Friday while I'm off work for the breathing test/alteration of meds.  I'm going to probably have to work this weekend one day as sadly I have the biggest caseload I've had in months this week when I need time  off and my only help quit without notice this week.  So I've been working hard and dealing ice storms (tonight in the 2nd in 24 hours) and also have truthfully been extremely distracted by something I'll share when I finish reading it.

Regardless, I'll be more normal soon I hope. I'm off asthma meds until the test and that makes things harder too since I like breathing and right now that's only sort of happening.