It worked

While I've not felt very well the last 36 hours, I have not vomited or had any risk of dehydration.  Because losing fluids and electrolytes so easily dehydrates me because of my diabetes insipidus the last time I got really sick and wound up having to go in for 3 or 4 L of fluids and took 2 weeks to return to normal hydration, along with being off meds for days because dehydration just makes you vomit more meaning no taking meds (I don't even try when I know I'm too sick because increaseing the dehydration factor isn't good and throwing up the $100 and some worth of medication I take daily is depressing (and I have to take several days off from patch wear when dehydrated as it concentrates resulting in a rash that causes more problems and in someone with med allergies like me can mean the end of something that works---and if I go off the patch that means several weeks inpatient as I have to have it totally out of my system to start something oral.  I would have maybe 5 days before I'd crash without it and then I'd have to be inpatient until the next MAOI was started.)

So anyway, I have Zofran for nasuea when I get sick.  This was the first time I've used it this way and it's been great.  Ok, great and stomach flu don't go together.  It's been much better than usual. I actually only needed one.  My body still go the germs out, I still have had a fever and haven't felt fabulous (I still have a slight fever and cannot seem to get warm except when I'm burning up), I've not had meds or my inhaler (which I'm trying to avoid until testing anyway; it says off 36 hours but I want to be sure this is accurate and with all my other meds there's no way to be sure my clearance is totally normal anyway).  I even woke up every 2 hours on my own for fluids.  Which is usually hard to do.

I finally got sick without dehydration and undue nastiness.  One point for team Jen!

I did really well here

This week in a brief discussion about my bipolar diagnosis my boss expressed concern she might need to know what to watch for, something I can't give her as there really isn't anything anymore that isn't readily seen by me or my treatment team, and I don't do things like stop meds or the like, period.

I thought a long time about how to answer.  Then I realized it was obvious.

 

As for your question about what you may need to watch for in me?  I finally realized the answer.  You've known me for nearly 9 months.  So the same things you would have thought 4 weeks ago.:)  OR even better, back before I got whooping cough since that has screwed with me in all kinds of ways for way too long.

 Let's just say I can think of at least 5 med changes for various sx I've been through since you've known me and none has impacted things like this stupid asthma  or seeemed to make anyone worry. Which we are praying will be controlled very soon.

I'm still just me.  Just with another word that describes part of me that has little power over me

Promise

I think that's one of the first times I've told someone and absolutely not apologized or let them think they could think differently about me  and that this was ok.  I think this is my blanket statement from now on.

Duh

I keep starting posts and falling asleep before finishing.  I'm just very run down right now and cannot wait to get fully on meds next week.  Of course I have to have a test that requires no asthma meds for a few days but whatever.  I'm tired constantly and even slept 8 hours last night.

Last week I treated someone who told me at the next visit that the entire family had started vomiting after I left.  I thought great at the time but it sounded like food poisoning.

Midweek I complained to Dr. Body that my hair is coming out in clumps, questioning if my thyroid meds were right.  He said the clumps mean that it's because my body has been under so much physiological stress for so long.  I should have realized that meant that I also could just plain get sick.

I didn't remember the exposure when I wasn't hungry last night or when my stomach was very upset today.  My boss even said something about looking pale.  I thought it was stress.  Well, finally I saw the pt. and was reminded of the contagion.  I had to leave my next pt. rather abruptly to get to a bathroom.  But after that I felt less like vomiting, just not great.  I came home and climbed in bed with warm clothes and could not get warm.  Finally I took my temperature.  After getting sick of inaccurate readings I bought the old fashioned, wait 4 minutes kind a while back.  It's shown a few fevers during whooping cough or whatever.  I was very surprised though that my temp is 100.  Which is a pretty good fever for an adult.  So now I'm on forced fluids, tried crackers and decided no, will be taking pre-emportory zofran for nausea as vomiting gets so much screwed up we've decided to try to avoid it, have 2 heavy fleece sweatshirts and every allergen-proofed blanket I own on and the heat up, and am trying to remember how long for zofran to work enough to take tylenol.  I was supposed to work tomorrow and I suspect that just moved to Sunday.

On the very positive side I'm in my training period at work, meaning I am salaried as I'm expected to have lots of training time in the office.  I couldn't figure out how come each check has been significantly less (while I've been doing more in office work as I've had help allowing that).  Finally today I was able to get the right person to look and turns out that the computer system change they did in December took me off salary and I am owed nearly $3000.  This explains why paying bills has been so painful.

And there is nothing like a tuna scented cat in your face when you are nauseous.

Catching up

Sorry, I didn't get home until late last night and so coudln't update.

Yesterday was another bad day.  I was up 7 times that I was awake enough to count during the night, and since I am so sedated if I counted 7 it would be more like 20 probably.  I stayed home from work (ick, now I have to work the weekend), and slept all day.  Literally slept until 3:15 when I had to get ready for the dr.

The doctor had tried to get the pulmonologist to see me, but the pulm. is too busy and the back-up one isn't as likely to listen to my doctors.  So Dr. Body is trying to handle this with some input from the dr. who couldn't take me (I suspect that translates to wouldn't). We went through a lot of possible contributors and ideas.  Ultimately we settled on I will work 3 days next week.  I will be off 2 days that week and then possibly 2-3 the next if needed.  During that time I'm going to have a pulmonary function test that should thoroughly diagnose asthma.  I also will continue with the med I've been doing ok with in the AM with using my PRNS to control the mania from it, and will add it to the night.  I'll then increase my seroquel so I am sleeping but hopefully not so exhausted all the time thanks to not sleeping.  I was taking 750 mg of seroquel before I got sick and psychiatrically felt better there, so hopefully this lets me go back up to a higher dose but stops the constant awakenings to cough and get water all night long.

If that doesn't help then we face a gamble of which part of the current med helps more, the steroid or the other part, and we'll try one of them alone.  Thankfully it appears to be the non-steroid yet still hard to handle with BP stuff.  But if things go as it looks possible I may get to manage this with a not so bad inhaler and then a makes-me-manic rescue inhaler.

I was away so long because I had to see Dr. Mind too.  I haven't been hearing back from Dr. Brain.  I'm not sure how to handle that exactly, but apparently they've been communicating so maybe that's why I don't get answers.  I'm struggling because I feel like she's mad at me or something as some questions have been reasonable.  Anyway, I got a little annoyed because part of her input was that the whole pulmonologist fiasco of last week was just that I'm not as sick as their usual patients.  I respect that and  think I said as much to someone last week.  But that wasn't my problem; my problem was that they were letting me explain what was going on and why I was there until they heard the word bipolar and then I wasn't allowed to talk or explain, just answer questions that were not relevant to what I needed.  And no matter how hard I tried to get them to listen they wouldn't.  And if that hadn't started only after they heard "bipolar" then I wouldn't care, but it did and that makes me very angry.  Which is why Dr. Body is now my pulmonologist.  So that level of misunderstanding did not help any.  I know perfectly well that typical asthma like mine is easily managed and is like a cold to those specialists.  I also know that since my family doctor feels out of his arena in treating this because of the high risk of making me manic, and because he can't hospitalize me if things get out of control, then that means I need a specialist.  Not because my asthma alone is complex but because I have a number of complex illnesses combined.  It's not fair that doctors hate dealing with bipolar people so much that poor Dr. Body winds up being my specialists.  I can't find a nephrologist who is interested in dealing with my annual visit for diabetes insipidus which involves looking at labs, looking a urine specimin result done in office, and making sure my medication is keeping my electrolyes normal.  Literally 15 minutes per year, but the only option around (I think; one big practice) screwed things all up and tried to put me on a low potassium diet when my potassium was at the high end of normal and had he only asked he would have learned I eat a lot of potassium, therefore the higher level.  I can't breathe but that's overcome by bipolar.  It makes no sense.  None.

I think my supervisor at work is mad at me for the time off.  I am trying.  My boss is fine with it and the bipolar; the bipolar obviously makes my manager feel like she needs to be cautious of something.  I think I'm going to tell her that I work so closely with my doctors and monitor myself so closely that I don't even remember what another person would see before I do because I always see if first and if I don't Dr. Mind does.  Both Dr. Mind and Dr. Brain are able to see mood changes within 30 seconds of seeing me.  Dr. Brain also can tell from how I write to her when I email.  So that's hard; I understand her feelings yet she hasn't felt that way about me until she knew so why change now.  I think that's what I'm going to tell her.  I hate this. I want to just be me, not bipolar me.....

And if I don't get paperwork done I"ll be in trouble me.

oxygen

I've stuck very carefully with taking 1 of the 2 doses of the mild steroid inhaler I got last week. I noticed yesterday that I wasn't having constant asthma attacks, I was breathing without pain, and I could almost take a deep breath.  I thought it was because yesterday was nothing but taking it easy.

Well, today was the return to normal.  And I only has 2 smaller asthma attacks all day.  And even at the end of the day my voice sounded normal.  I had come to believe my voice was permanently damaged by whooping cough. Guess not.

And then an awesome thing happened---my sister emailed to see if I was ok because she knew I was stressed yesterday.  That made me happier than anything has in months.  It only took a baby girl to build a relationship that seemed damaged forever........

Hmm.

Not a lot to say.  I worked today, and had a few hours I still owed them to finish up a few more of the approximately 10 million online classes required when you start working for this company.  I have not enjoyed them because most of them have been about things I already had been doing daily for 6 months when hired.  I was smart enough to get the worst of those out of the way.  I thought I was down to about 6 classes before the bigger medical condition units, which would have meant today I nearly finished but instead the computer system tracking things is back up (mostly) and there are more.  That probably means some of the annual stuff has come due now too.  The classes I have left tend to be very tangential to what I do.  I understand knowing about how the whole agency works, but it's pretty boring to do 45 minutes of learning about a computer program I don't even have.

I wish I could just get to my appt. with Dr. Body on Tuesday.  I have so many things I'm not sure how to plan, only that I have to do whatever it takes at this point to heal and get my life back.  Any messing with my psych meds makes me terrified and I hope they listen to me or Dr. Brain as I can tell them several relatively easy ways to keep me nicely sedated that won't mess things up too much.  My greatest fear is that my psych meds will get out of whack and take a while to readjust and I'll struggle through that time.

I've asked my family about a zillion times to pick dates for family photos b/c the cost was about to go up.  I got a couple non-committal answers and nothing else.  This morning I just wrote to everyone that I'd decided on a day and was putting my foot down.  My sister didn't like this.  She probably will like less the huge email she got with all the reasons I have to be stressed and a little grouchy, including that I don't want to have to deal with the photo thing just after the hospital.  I'm also frustrated because I thought this was such a good idea and nobody acts particularly interested or excited, and I have worked so very hard to find a photographer, get the right sized package together, save the money to do this, and I can't get anyone to engage, despite siblings agreeing to this months ago before I really delved into it.

And I'm actually getting sleepy without meds.  That means I've got to get meds in me NOW.

Night

What I am taking back

I tried the mild steroid inhaler this morning.  It made me manic.  I forgot to tell the dr. this but it got my heartrate up to 130.  No wonder I couldn't sit still.  It was mania that only I could see, just distractibility and trouble getting the right words out and racy thoughts I could still follow.  However, that was one dose.  It did, however, give me a very quick look at what having a less constricted airway might do.  And that was a huge eye-opener.  It felt so good for that short time to breathe in and not hurt.

I left Dr. Body a message that he had been correct and this caused mania (only in code so only he'd understand).    And I did some serious thinking.  I've been doing this the last few days, but I have come to a conclusion.

Steroids have been an option for almost 2 months and I've refused.  I've tried to do what I do so often and bulldoze my way through not feeling well.  With bipolar I can make a lot of med changes that help, but when I have a bad day I just ignore it.  Well, until my car accident I hadn't realized that this does not work for asthma.  I realized this first when the intervention determined by management is that I am to seek treatment for asthma.  (I did try this week but that's another story they don't need to know).  I actually wonder if I was fully conscious when this happened as I know I was digging through the chart, just as I do in 75% of evals when I'm not positive I'm where I belong and I remember having a hefty coughing fit.  But I do not remember the car moving at all, just the bang and being confused.  I will discuss this with my doctor, but I suspect that I had a dip in oxygen levels or I just sort of passed out while coughing.  And that scares me to death.

Today I took a hard look at my life.  And I realized that when I was telling Dr. Mind Monday that I was at the end of my rope and couldn't handle more of this, and that I just couldn't take more that I was more serious than I realized.  At the time I even said that this was just my time to feel sorry for myself.  But really?  No wonder I feel sorry for myself.  The situation is partially of my own making, partially Dr. Body trying everything, and partially both of us trying to avoid the inevitable.  I have no quality of life anymore.  I don't sew, I don't blog, I don't play with my Wii (low exertion but still, fun, games, etc.).  I don't spend any time outside.  I have barely seen my mother.  I did see my sister and niece last week but the timing was all messed up by my sleeping late b/c I'd been up the entire night before, and the day exhausted me so much I slept all day Sunday.  Aside from a hamburger and heating things I cannot remember the last time I cooked.  It probably was October.  I love to cook.  But I have not energy.

I'm so tired at night that I don't even have the energy to fill water bottles.  I have tons, I just don't have the energy or patience to deal with them, much less pack a lunch.  Thank God for McDonald's oatmeal, although it seems half the time I totally forget lunch lately.

It also occurred to me today to find out of uncontrolled asthma can further batter the lungs/bronchials.  Since this occurred due to whooping cough damage I don't want to hurt them more.

(Incidentally today I overheard someone on the hospice side of my cubicle talking about how someone (who works there?  sounded like) is out with whooping cough and why didn't she have shot etc.  I wanted to walk over and explain whooping cough.  And that it's likely that although I wouldn't have infected anyone now, I did my part to spread the little epidemic, diagnosed or not, so it's nearly certainly indirectly related to me.  But criticism?  That's ridiculous.)

Tuesday I'm meeting with Dr. Body to formulate a plan.  I dread this because I know what I need and want, but it's time.  I've tried as hard as I can to do this.  Turns out that I miss breathing.  Even stupid stuff like laundry gets me all choked up just because bending over makes my lungs weird.

I'm starting to get sleepy.  I have to work tomorrow, probably most of the day, to make up for Monday.  I'm going a bit later than usual but not significantly so.

So I'm going to curl up where my cat isn't right on top of my lungs (see another thing missing because of this) and get some rest.

Time to talk

So yesterday was a turning point.  Not a fun one, actually a totally crappy one, but a turning point.  I had horrible asthma symptoms on the way to work.  I pass 2 hospitals and I thought about each one's ER.  I convinced myself I could go to work and have a nurse listen to my lungs and then go to the ER if they thought I needed to.  But of course I talked myself out of asking.  I was a bit better and I stayed a bit better but not comfortable all day.  And then in a convoluted way I can't describe here, my asthma attack triggered a minor automobile accident.  Very minimal damage to what I hit which I'll be paying for, my car is fine.  Horribly embarrassing as the accident happened because my foot came off the brake while having an asthma attack.

The one thing this did was to determine that something is going to be done.  And that "something" is steroids.  So I sent my doctors an email last night telling them that this was the sign that it was time to give up and admit I can't fight this off anymore and that is is affecting my life terribly, and so I gave some dates that I need to have to complete something major at work, and that after that I would do anything necessary to stop this, also knowing that if it gets one bit worse than it is now that I have to do it sooner.

So I have a prescription for another inhaler that is the mildest possible but Dr. Body thinks it will cause mania.  I hate to have a bad attitude but since the non-steroidal one did I find it hard to believe the other one can do anything less.  I am going to try one dose Saturday morning and see what happens and if I can handle it I'll very gradually get on it next week while working.  If it makes me manic or doesn't help then we'll go to plan 2, which is a pulmonologist that he typically refers to and trusts and who will listen to him about how complicated this is.  I assume from there I'd be admitted for the kind of steroids that I probably need anyway.  I would not be at Dr. Brain's hospital, but I am not very sad about missing out on the doctors who wouldn't listen to me, and the people who have not called me to schedule a test (that I don't plan to do but still should have been called) that was allegedly all important.  It scares me to be at a hospital with less psychiatric specialization, but as I told Dr. Body I'm ready to deal with that and truthfully I'm extremely good about fighting about medications and what I will/can take and what I can't.  And when I'm manic I'm a better fighter than usual.  Plus I enjoy fighting then.  So win-win?  I guess.  This is better than my proposal though, which was to start steroids at home, see what happened and then go to the ER at Dr. Brain's hospital, probably landing on a psych unit.  I was willing to do this but I would so much rather be on a medical floor.  If I am put on psych there it will be a general psych unit, not mood disorders only as I was in last year.  And that's not wonderful.  But the one positive?  There won't be Cynthia, the nightmare nurse.  I was dreading the possibility of dealing with her while manic.  Or normal.  I carry a lot of anger at her....

So this means that tomorrow I work, if I can get there through SNOW, then I get my new med.  Saturday I work to make up for Monday.  I try that med.  Depending on how that goes I continue increasing carefully and get better (please God, it's not likely but nothing is impossible to God) or I don't.  In that case I finish this week, work a day or two the next week to help us meet some compliance things, and then go and try to get well as fast as possible.  If Symbicort does not make me manic on a full dose but doesn't help I'm not sure where we go as that's so unlikely it's not being discussed.

I may see Dr. Body Tuesday.  I have an appointment; I don't know if there is benefit in keeping it.  He'll tell me.  Or he won't and he'll get to see me.  I want him to listen to the lungs anyway as they do not feel good, so we'll see.

And that's my new story.  Decision made, I fought really hard to avoid this and it's unavoidable.   I've fought longer than the doctors wanted me to and now my ability to function is clearly compromised as well as my safety and I'm constantly hurting and uncomfortable from feeling like my lungs don't have scar tissue but instead have shrunk.  My timing is horrible as Dr. Body will have to manage the backing down on psych meds, but Dr. Brain will be able to give input before she is on leave herself for a month. Hopefully this will mostly be over when I see her again and she'll be able to direct the finishing it stage.

So I talked to my manager and she knows about bipolar and everything now.  That was a hard decision, but since her first reaction was "well, you cover THAT well" and she seemed to fully understand the horrors I've been through this week.  I just wanted her to have lots of notice that I may be off for a bit and I wanted her to know why, that this is beyond typical and that my being off is for the patients' sake as much as anything.

And now I need to check my laundry, throw in more, and get my paperwork done.  yippee.

So much for trust

This has been a very hard week with some really good spots in it.  However, I'm struggling with a lot of decisions and uncertainty.  And I'm tired.  That's why the blog has been neglected; I've been sleeping.  Or not sleeping and crying, depending.

Essentially this is the last week:

Tuesday I wrote about breaking my glasses.  I didn't go into a lot of detail but I also had a tough time with Dr. Mind because against my will my memory kicked out a lot more information about why I get so upset with my face covered.  So I was dealing with that.

Wednesday I got a call on my way to the pharmacy from a program my health insurance is doing which has us fill out a questionnaire and then we get a discount on our plans.  They assist in increasing healthy lifestyles.  In my case they are able to provide asthma education.  I learned a lot just from the intake nurse and am looking forward to the actual training person.  So I finally felt fairly good about this whole thing when I picked up my inhaler.  I was glad to have it as I'd had a drippy nose that day and increased tightness.

Thursday I used the inhaler.  I was quite conservative.  I was also up all night manic.  I fell asleep at 3:30 AM after emailing Dr. Body crying at 2:00 AM because I felt like I had to choose between breathing and sleeping and I can't make that decision.  I asked him to try to help get me into the specialist sooner.

Friday was bad for work.  I had to drive a lot of extra miles because of timing issues.  Then I had to have all my documentation done before I could leave because of a computer upgrade.  So after only a few hours sleep I worked until 7:30 and then drove home.  I did sleep that night and even slept in Saturday.

Friday night I got home to an email that he had succeeded, although not the doctor who I'd been referred to and who had all my psych records, etc.  I couldn't confirm this until Monday morning though.  I was also cautioned about when to go to the ER over the weekend, etc.

Saturday was my birthday and per my request I spent it with my niece and sister and her husband. I got to see my genius niece sitting up all by herself, played with her, read to her and watched her love the book I got her.  And we went to a really good Mediterrean restaurant.

Monday I was able to get an appointment although with a different doctor.  And it was awful.  I can go on forever because I'm so upset but let's say that when a doctor asks "and what brings you here?" and then interrupts after the first sentence and refuses to listen to your story after that point, it's not good.  Pretty much bipolar stopped everything.  So, instead of doing what was needed desperately I was diagnosed with asthma but will not be treated until I do a test that I need more information on but which I don't think I can handle.  I have enough trouble with feeling my oxygen is being cut off because of PTSD.  This makes you feel like you are struggling to breathe for several hours.  I also don't see a real need.  They were sort of acting like Dr. Body was clueless if he couldn't diagnosis and treat simple asthma and would not let me talk about why this was not simple.  They have no clue that I was there to arrange back-up if and when I need steroids.  I am well aware this isn't that bad.  My pulmonary function test was at the low end of normal.  I am much less sick than 95% of their patients.  But I have a situation that is very unique.

In the meantime I'm left with almost no safe treatment options  and a tight wheezing chest.  I have an email out asking (for the first time I am willing to do this) at what point we use steroids, know that I will get myself to safety immediately when needed, and get this over with.  I don't like feeling like it's hard to breathe and I can't treat it.  And I'm just so very tired.  One of the things that made they not help me, I think, was that I can't be sure I'm waking during the night because I take so much sedation.  All signs point that way, I'm exhausted for no reason no matter how much I sleep, I am hoarse in the morning, I have more lung tightness/pain/pressure in the mornings, but unless I can say I'm waking 15 times it doesn't count.

The appointment yesterday was about as hopeless as I've felt in a really long time.  I cried all 9 floors down, all the way to my car, for a 15 mile drive, and then through emailing my doctors at Starbucks.  I do not ever cry in public.

I also learned I need my mother to have a POA as their solution to a crisis is go to the nearest ER and then request transfer to the big hospital.  Except that as soon as steroids are in my blood I won't be stable nor able to sign myself out.  And until my mother can do that for me I may have issues.  Yet I don't have time to see an attorney.  It's annoying.

I'm incredibly angry at the whole thing.  I feel like I've been through enough with this and I just want someone to HELP me.  Dr. Body has tried but it's beyond his safety zone and I respect that.  I don't know if he can even ethically start me on steroids.

My vote at this time is just do the stupid steroids and deal with it.  I know it's the best change at gaining control we've got and while I do not want to have to feel manic and suicidal, I also know that I am safe from myself and that I'd have a whole team looking carefully after me.

I am being a brat about this testing.  If my doctor says I need it I'll do it, but not until I've had a few weekends off.  Every time I take off work I have to work the weekend and I'm exhausted from this.

So I've been struggling and angry and frustrated and scared that this is never going to feel better.  It has been rough.  I do have half a post done about something B. said/asked, but that will get done when I have the ability to do it.  Right now I just physically struggle to do much of anything but sleep.

More soon...

Five Years

Five years and about 2 months ago I registered for this blog, set it up, and then didn't post because I wasn't sure.  Five years exactly, about to the minute if I remember I posted for the first time, marking both a bit decision to start to risk just a little bit having people know my diagnosis and my 30th birthday.  (Please don't say happy birthday.  Today was has been the best birthday I've had in many, many years, but those words make me cringe).

I'm sorry again for not posting much.  Tomorrow I really want to finish posting what I have been writing the last few days.  Right now I need to sleep as soon as I can.  Thursday I started an inhaler of the same med I've been using in the nebulizer with no problems.  I did not use a lot and the last dose was at 4.  I was awake until after 3. So I did yesterday on almost no sleep and while I did sleep last night I am still recovering.  And frankly my asthma is a major issue right now, I've been warned I may be hospitalized, so although I'll have my netbook (unless something uncontrolled happens) and will write as I can, if I am gone just know I'm really fighting with this.  I may not be in the hospital, but breathing is not easy right now and when breathing is hard everything is hard.

Like I said, if I can tomorrow I will finish a real post.  If not then soon.

Sorry to be boring.  Somehow I thought I would have more to say about 5 years of blogging but I am so sleepy right now that there is no depth in my thoughts.  Maybe 5 years part II will happen.

alive

Having a hard time.  Not feeling very good and very busy.  New inhaler keeping me awake.  Post half done, will try to finish tomorrow.

Sorry to disappear.  Crazy week.  Everyone had some kind of problem that needed addressed or rescheduled.  Craziness.

At least I got a lot done

I've been having some mania the last few days.  Not bad, but mania is never good.  However right now I'm controlling it fine with meds and just feel jumpy.  Which is unpleasant but there are much worse things to feel.

I had a stressful day yesterday.  I somehow popped a lens out of my only glasses when I got out of the car to go to the post office and couldn't find it.  So I spent all day trying to see well enough to read and driving with sunglasses on even when it was dark.  I did get new glasses and a replacement lens so now I have to choices of frames to pick each day.  Or at least I have a spare.  Right now I am really liking the new ones but we'll see how long until I change my mind on that.  Then I had a late appt. with Dr. Mind and didn't get home until 10:15.  So it just was a long day.  I am tired.  Really my eyes are tired but it makes me want to curl up and sleep a few weeks.

I got the rest of the details on the multiple steps leading to my getting those wrong meds; it was a number of errors by different people in different places.  But it's fixed now. I am also getting an inhaler (thank God).  I have an appointment with a pulmonologist on the 27th.  Interestingly they are starting with basic tests he'd want anyway which I love because many times you'd have to do those then come back.  And the fewer visits to doctors 2 1/2 hours away the better.

That's about it for this week so far.  Now I am just doing my no snow prayer ritual.  I don't want to be stuck in a motel tonight.  We'll see......

Normal means so many things

Yesterday when I saw Dr. Brain I was talking to her about the difficulty I am having balancing the proper amount of psych meds for anxiety with the exhaustion from not sleeping very well on a consistent basis.  I was then talking about having a hard time covering my face and that Dr. Mind and I are working hard on this but it took a while before I realized that she had no idea why this was so hard.  I forgot it's not a normal part of human experience to have had your face forcefully covered and so people do not automatically assume this is the problem.   Apparently I am so used to this I forgot.  Weird.

I spent this morning doing a zillion things mainly out of anxiety.  I finally got my washer and dryer delivered and installed and the first load is in it now.

Yay!  And it only took 6 weeks thanks to stupid whooping cough!!!!

It was not a boring day

Today began early with trying to get a few things done before my trip to Dr. Brain and the car dealership for an oil change.  I knew I wouldn't be home most of the day and my washer/dryer are finally definitely coming tomorrow so I had to get the last of the walls down.  I got the drywall down this morning and tonight took down the studs that needed to come out for the delivery (some require unhooking electrical boxes and I don't know how nor do I care to learn while hurrying), stepped on a nail that went clear through the sole of my shoe but only scratched my foot (thank God as I can't have tetanus shots), took down the door, expressed a great deal of anger at people stupid enough to use nails 2 inches longer than needed then pound the ends down, making removing the doorframe 14 times harder than necessary.  Then I cleaned up enough to make it safe to walk around in there and swept up some and removed all nails that could hurt someone.

I hit a surprise lake effect snowstorm just before getting to Dr. Brain.  The last few miles of roads were bad.  I wound up going in early and so I waited 90 minutes to see her.  This was fine since I had an eval yesterday so complicated it took me probably 2.5 hours to write up, when usually I need 45 minutes to an hour outside their home.  The snow was over by the time I finished with her so I went to a store that I'd heard had overstock calendars for a dollar. Not this particular one.  Then I went to get the oil changed.  I had to argue with the maintenance guy about the mileage requirement for my car (the 2011 is different than the 2010 and since I got one of the first 11s and drive so much he'd probably never seen one, but still it was annoying and he could have put the wrong oil in and messed up my car.  That took nearly 2 hours.  But the good thing is that they put my new license plates on, which I was stressing about because of cold air and at least 15 minutes of work.

I had called in a bunch of prescriptions.  One was my Nuvigil which I pay for out of pocket but last month didn't cost anything.  The clerk told me my insurance paid so I was horrified when it didn't this month.  Turns out my favorite pharmacist used a coupon last month but didn't tell me because he didn't see me and only 1 coupon per year can be used.  Dr. Brain thought I didn't have refills on some meds that I did have them (we're out of sync because of Dr. Body doing my psych refills once after the hospital while she was off and we haven't gotten her list and my refills synced since).  Thankfully we did look.  The ones I needed from her were there.  They'd faxed a refill request for the medication I take for diabetes insipidus, called amelioride.  Amelioride is a diuretic that also regulates how much the kidney releases electrolytes.  So for someone like me with DI (I pee huge volumes of non-concentrated urine because my kidneys don't get the signal from my brain to regulate due to damage from lithium use) this diuretic actually results in urine which is more appropriately concentrated (for me it keeps me at the very last number in normal concentration; when diagnosed I was so low as to be unmeasurable, ie. pure water.  However amelioride is note a med used often at all, mainly only for people with the form of DI that I have, and DI is rare.  I spend a lot of time explaining "I do NOT have diabetes.  I have DI which is a KIDNEY problem" to healthcare professionals.  Usually they then continue to ask about my insulin needs.  Stupidly named disease.  Anyway, Dr. Body has been on vacation and his partner wrote the refill.  According to the med list in my online chart from there she wrote for the wrong form of this medication.  Somehow that turned into another error, either on the part of her staff or at the pharmacy.  Instead of the med I need I was given 2 meds.  One is another diuretic that is not electolyte saving and therefore useless since that's the only reason I take it.  Another was for a high dose blood pressure med.  If this sound familiar it is because this happened to me before; the pharmacist substituted what he thought was my dr. misspelling something instead of calling the dr.  That was when I was new to this and very fortunate I caught it.  It was my 2nd month and I went to take it and saw it said it was 1 10 mg pill and i knew what I took was not available in 10 mgs.  So I glanced at the bottle, realized it wasn't right and called the nurse to confirm.  This time I knew immediately.  The scary thing is that this is a strong blood pressure med and I have low blood pressure so this could have caused serious problems both times it's been prescribed accidentally.  Thankfully the pharmacist gave me a supply and I sent Dr. Body an email because trying to call and explain to anyone in the office is going to sound like I'm questioning the Dr. (who I don't know) and that's not it at all, just someone somewhere made a big mistake and I need it corrected.

Then I had a big argument with my mother.  I still don't even know why.  I think she's tired of me responding to stress by being grouchy and that's been common since I got sick.  2 months of grumpiness is a lot, but she has also taken "I'm a bit better the last few days" to mean "I'm better!  No more asthma.  I'm great" and that's not true.  She was actually confused that I'm still going to see a pulmonologist.  Yet I need to, everyone has agreed, partly so I have someone on my team who can admit me if i need steroids, partly because I need someone who can treat me if I do get a cold because that will make my lungs go crazy, I need to see if someone who is specialized can find any more meds I can use to get better control and less reaction to every trigger I go anywhere near, and just being checked out probably isn't a bad thing since adult whooping cough isn't common and he may know something that would help my lungs heal better.

So it was one of those days with 45 things happening at once.And now I'm falling asleep, haven't eaten supper and the cat is pestering me to feed her.  Ugh.

Devoid of creativity

I have no clue what to title this.  I am not sure what I'm going to say which probably contributes to that.

Another week down.  I am starting to feel better both emotionally and physically.  Slowly but definitely.  I still need more rest than is humanly possible but I haven't had a wheezing episode in 2 1/2 days.  I haven't even used the nebulizer in 2 days

Dr. Mind and I have worked together on this covering the face thing and at least have a plan.  It may wind up being just plain weird and may or may not be effective, but since I have been trying to practice covering my face for a while in a safe place and not panic and discovered my limit for this is short and that I need someone helping me stay calm.  So we're going to make some kind of tape to help me relax, talk me through covering my face and hopefully gradually increase to a reasonable amount of time.  We'll see how well it works but it is all I can come up with.  I also made a list of things that make me feel constricted and afraid and realized that this fear impacts everything I wear, how I sleep, sometimes even where I go.  It helped to see that I survive a lot of times I am not enjoying things.

Not much else.  Today I'm going to see Dr. Brain and then my car gets its first oil change.  It's growing up, my little Forester......

Boy I confused everyone

Let's see:

Jen?
"Covering your face" - are you meaning that the doctor suggested a scarf around your mouth and nose to protect your lungs from breathing in the cold air?
B.

Yes.  When I'm in cold air or near chemicals I have to cover my mouth and nose.  It mainly only works if done tightly and I am not handling it well.

WinnyNinny PooPoo said...

I have done things that I thought I could not do from an irrational fear of heights. It is not totally irrational as I fell from a second story window when very young because I was able to open a window my parents thought toddlers couldn't open!

You just set a small goal and do it, then another and then do it. I was able to go to the top of the world trade center and walk around - that was my graduation.

3:02 PM 

There is a major difference:  This is irrational to you, but I have been held down with my mouth covered, grabbed and had my mouth covered to prevent me from screaming or getting help, had a hand held over my mouth and nose until I went into the place inside that lets you be silent while someone hurts you, and after I had developed enough fear of this had my mouth covered from behind without knowing who had grabbed me, many, many times in my life because my father thought this was funny and also a good way to maintain total control.  During those times horrible things happened to me and I fought and fought and couldn't do any good.  It's totally rational for me to fear this.  So it's not like the fear of heights I've also pretty well conquered; that I could rationalize my way through.  To me, something covering my mouth is not just claustrophobic it is a rush of bad memories, it is a feeling of being totally powerless, it is the feeling of having all control of my own body taken away.  And because I have PTSD sometimes I not only have to deal with horrible memories I also have to relive some of those moments in detail.  In my case this is usually in my dreams and right now that's even worse because I wake up with the memory of feeling trapped and unable to breathe and I am waking up because I have moved into a position where I cannot breathe well from the lung issues.  Because I'm very sedated at night it takes time to orient myself and so between fighting to not relive bad memories when I'm outside or near a smoker and when I get into a bad position at night I'm really working hard without even trying.

Michal Ann said...

I'm confused,too. And which Dr. Mind did the convoluted tissue box maneuver? Are you glad you had the session "or not?"

Dr. Mind the First was the tissue manipulator.  He had this tiny office and except for a few times he sat behind his desk to keep me feeling safer I sat only a few feet from him.  Dr. Mind the Second has an office set up for couples and family therapy, so he has a desk chair that he pulls into the room, 2 small couches and a chair.  At first when I saw him I sat on a couch and he sat across from me but I never felt safe there for some reason and never made eye contact. Too close I think.  So from about 6 sessions into our 6 years together I've sat in the airchair and he sits a good 10 feet away in his desk chair usually.  It was really weird last year when I hurt my ankle because I had to sit on the couch I'd never gone near for several sessions while he sat on my old couch so the angle wouldn't be bizarre while I propped my leg up.

I am glad I went.  It was hard, and I've spent a lot of time thinking about things I'd rather forget since yesterday, but I also realized how much I had any constriction and how much I avoid it in so many ways.  I started making a list of ways I don't feel trapped and it's huge without effort.  Even my clothes are designed to feel safe.  I also have an idea of how I want to try to proceed to try to make this more possible.  He told me to think about what has worked before when I had to deal with traumatic things that were preventing me from doing what I wanted to do/had to do and from that I have an idea.  We'll see how he feels about it Thursday.  I also gave in and arranged appointments so that I don't go more than a week before no matter which of us (ie him) is out for whatever reason.  A couple times that means two appointments in one week to keep them from being 10-12 days apart and I think that's ok for now.  If nothing else I need to practice trusting him again and the distance I put between us when we miss sessions frequently makes that pretty hard which is why I don't try to reduce my visits ever; it doesn't work.

Does that make more sense?

Or not.

It was a hard, hard session that ran for 70 minutes.  That happens only when it is INTENSE.  And this is when he came in mainly to see me while still feeling bad.  I feel bad because I don't think he realized this was an additional appointment and wouldn't mean another missed week.  And I did not exactly go with the less intense approach.  But I did what had to be started so that I can start finding ways to not freak out. Apparently I'm not the only one who worries about what happens when I miss so much, and he is also going to be away next week although I will still get in to see him.  I really should try to get an extra session early the next week too so that I don't go more than a week for a while now.  Extra sessions are just hard now because of the distance.  However, I've now gotten us into deep waters so I probably will need the help for a bit.

Today was spent on dealing with covering my face.  It's not easy.  There are way too many memories that come back and not ones that I feel empowered by.  There are more bad memories than I want to consider.  Dr. Mind seems to think I will be most successful if I can learn to cover it with my own hand.  He says that I do so sometimes when thinking, even did so today.  However, I do not know that the loose cover he sees will block enough cold air.  On the other hand I will fully admit that he is correct and that this issue seems so huge to me right now that it's all or nothing and that I'm frustrated enough to be having a hard time seeing that there is potential to succeed.  I honestly think that it takes a decent amount of that to ask for help in coping with it, but I also see his point.  I'm scared of everything except not covering my face and to do that means damaging my lungs.  Dealing with traumatic memories seems better than permanent lung damage.  Apparently this is an understandable issue but what I left realizing is that I need someone telling me that I just have to do it.  Which is what he is good at and where he did end up.  Once I tell him that I need him to be firm he'll probably enjoy doing so.  We did determine that I simply have a great dislike of anything remotely like being held down or restrained in any way.  I even realized while talking that while I was in the hospital and had what I now call The Great Freak-Out where I cried for hours before seeking help and barely kept myself together enough to function I partially kept the control I did because I was aware that if I lost it too much that I'd be subjected to the restraints I had signed an agreement to be used, and moved to the general unit probably more restrained that I care to consider.  And as out of control as I was then to have any reasoning meant that I'm pretty terrified of that thing.

I made one error.  I've made this before and I know why he always feels he needs to be sure I know it's never, ever going to happen.  I used him as an example, as in "well, if you touch my face I'll bite you".  He knows obviously that I'm not going to attack him.  I also know he is not going to touch me.  In almost 6 years he has touched me once, and since I was shocked at the time I remembered but did not freak out, which also made me remember.  (It also makes me remember this time when DON'T TOUCH ME was a deadly serious rule and I (one of a very few times) started crying with Dr. Mind #1 (yes, this one is the 2nd.  They are so alike they should have the same name and this is why they are the only effective psychologists I've had.)  Anyway, he did not have tissues near me and couldn't very well reach out to me to give me the box.  So in the most convoluted move I have ever seen anyone make without falling or knocking something over he reached for the tissues kind of sideways, then somehow arched his arm clear around a large lamp to the other side of the table and pushed the tissues up to me on my side of the little stand between us.  He must have reached 6 feet to avoid reaching 2 feet toward me because I was so afraid.  It was truly impressive.)   Anyway, whenever I say something like that he must think I am slightly afraid he will go after me sometime, even though I truly am not. So he made sure to reassure me that he won't ever purposefully touch or grab me unless I would be completely out of contro and in danger of hurting myself or him in ways I don't act at my worst and he would have no choice and nobody sees that happening unless I stop all meds or something equally dumb.  (my words, not his).  So we had that conversation again.

I just don't know how to do this.  I guess it's good I don't need to know.

Drat. Or not. who knows.

I just got a call to cancel my appointment with Dr. Mind.  This was an added appointment but it was in order to keep it to a week between appointments as he took last Thursday, my usual day, off.  And we've had so many gaps that I'm really struggling.  He's sick.  He does not cancel sick often so I know he's plenty sick but I really needed this appointment, enough that I was going in sick myself.  Oh well, it just means I need to stay home and rest a lot.  Which I really already knew.

I think I'm feeling a lot of stress because I have had very limited access to him since late October, probably the worst it has ever been between my sickness and his schedule and my inability to pop in during my lunch break.  That means that I've just held everything in for the most part and that is a very, very bad idea.

Or we're playing crazy day.  I just got another call, he was only canceling for the morning and can move me to another time today as long as he feels better.  I probably should just stay home as this means my planned afternoon of sleep is not happening, but I really need the help with stress.  Once again he's being extra-kind, creating a spot for me and offering to create another on the weekend if that didn't work that I can't take as it's the same time I meet with Dr. Brain.

Now I need to find Immodium.  I already had diarrhea when I took my AM meds which I did kind of in a fog and I stupidly took my laxative.  As in the prescription one that is strong enough that despite years of nothing else working I only take half of what is prescribed of this stuff on a normal basis because it works exceedingly well.  I guess my belly needs to settle after all.  The problem is that I cannot find anything of the sort, meaning I may not have any.  I just don't get this problem.......

And then maybe I'll nap a couple hours.  I went to bed really early last night (actually I fell asleep without meaning to) and slept clear until 7 when I woke up sick again for the 3rd time but I'm still pretty sleepy.  So we'll see if I can get some more rest.  Assuming I can stand to make my snuggly happy old cat move and go set an alarm clock, find the immoidium, and maybe even get sheets (that's why I didn't mean to fall asleep yesterday, I had no sheets or pillowcases on the bed and was waiting for my sheets to dry).

This is annoying, I keep telling myself now that I should take this as a sign to stay home, and that has more to do with not starting to break down the walls surrounding so many things I have to cope with because they've been on hold for 2 months.  If we'd just stuck to the schedule I'd be fine.  Oh well, I need to go and the fact that going is hard is exactly why.

Scattered

My last post when re-read seems very representative of my mood that day.  I have moved on.  I was so upset about reading some of what I did about my cat.  But later on that day I found some things to add to her food to help her stay full (and which are good for her) and since then we've slept.  In fact last night I fell asleep very early, not feeling very well, and the cats let me sleep until 7 without being fed, even though I was actually up a few times during those hours but not feeling well enough to face cat food.  And this morning?  I fed her and then was happy to hear a sound that has been rare around here in the last 6 months or so--Anna playing.  She has these certain mice that she loves to "kill" and while she kills them she makes the same noises a cat makes while ACTUALLY killing a mouse, and then she carries the "body" in for my inspection (although I'm not supposed to notice or comment).  Today we had a full round of mouse killing.  Since then she's been curled up on me purring.  So instead of being sad and questioning myself I've had confirmation from her that this is right and that she is happy with her life, and I've moved on to trying to figure out what I will do when I go away to the ocean for a week this summer and have to get someone to either very dedicatedly feed them at home or board them.  I would board them in a heartbeat except that 1)that involves loading up the other cat into a kennel, a task I hate more than dental work (which requires me to take extra sedation and makes me gag repeatedly) 2) they'd not have space to move around for a week or even 10 days.  My vet would abide by my crazy diet, but the overall situation isn't best for them.  So that means I'll be trying to find someone to care for them at home and it won't be the person who has always done it before as she did not do a good job caring for my mother's special needs cat last year.

I've worked some, slept a lot, and the rest is making me feel much better although I also have an upset stomach that I could live without. The kind of pizza I always have gotten with a lower fat content quit delivering here so I got another choice last night and I'm pretty certain their cheese is not all cheese I'm allowed, plus it was much fattier.  And now my stomach is angry.  That's ok, I'm off today and my only commitment is an appointment with Dr. Mind.  I think I need to buy cat food as well but we'll see how I feel.  That may wait and be done at work or something if I don't feel good in a few hours.

This weekend has been a good thing.  I have needed the rest so badly.  I have weeks before I have much chance to rest again becanuse next week is Dr. Brain and the week after I'm getting my birthday request of a day with my niece (my other request is that she be in a wonderful mood.  She's having a hard time with naps right now; if something is going on she doesn't want to sleep.  Then she gets fussy.  In a sweet way of course, but still fussy.)

 I also realized I made a big mistake. Not huge, not that important, just enough that I am annoyed with myself.  I timed a medical appointment wrong, which can be fixed, but I JUST turned in the request for a day off and now I'll need to move it.  To be fair I had the appointment scheduled differently and my doctor will be on maternity leave and I wasn't thinking when it was rescheduled at the next possible date (she only does 1 week of clinic work at the clinic I go to).

And I could go on and on about rest and how amazing it feels after so long without much, but I think we'll shut up now........After saying that my asthma is becoming much more controlled.  I think I'm going to use the nebulizer this morning but that probably has more to do with falling asleep without a pillowcase (or sheets) than anything else.  Even after a really rough day with it Friday I've had a much better weekend with no real wheezing in about 2 days.

Regardless although I fully expect my time with Dr. Mind to be hard I am so much better.  So very, very much better after sleep.  Thank God for paid holidays.

Please, please, please NO

Yesterday was my 2nd day using the nebuliser.  With the medication that I knew going in could cause agitation, but only rarely (yet I'd still be high risk because even a tiny amount of caffeine agitates me).  I've only used it at night, although I should have used it yesterday morning.  Last night I fell asleep without taking meds, just because I got distracted and missed them.  Not ideal, not recommended, but something that can be good because it's normal.  It also signals I'm not being all that agitated.

Well, today has been emotional.  One night of missed meds shouldn't cause that.  The weather changed and my ankle is hurting pretty badly and that is contributing.  My cat in renal failure has been waking me for a feeding in the middle of the night lately, which also isn't helping a lot.  That led to part of my little breakdown; I started trying to find information about this hunger thing and all I could find was all the things I "should want" to do for my cat rather than let her peacefully go through the natural process of dying at an old age, and it was the first time I'd read much about feline renal failure, mainly because I felt my vet gave me enough information, but I forgot that and wound up crying.  I cannot and will not do what I consider extreme treatments for an elderly cat. As things progress I will keep her comfortable, but I will choose euthanasia over injecting fluids into her or doing forced or tube feedings.  I've done the forced and tube feedings when there was hope the cat would come out of the disease process and was young.  It was terrible for him and for me.  I will not do that to my girl.  I will not put her on a restrictive diet because she loves to eat.  I read I should not give her treats as they hurt her kidneys.  Being alive hurts her kidneys.  Yes, I could slow the damage.  But the reality is that even though her lab values aren't wonderful she acts healthy and happy and has regained weight she lost prior to diagnosis.  She is back now to her healthy weight of a year ago before there were any symptoms.  Well, that's not true, she started stealing my water and benefitting from a water fountain about 2 years ago I think so that's when it started, but I wasn't worried about her weight until she'd lost 2 lbs and now those are back.  I do feed her (and my other cat who eats maybe 1/4-1/3 of it) 4 cans of food a day and he eats dry food which I think she's given up on, but the that's part of the comfort care and the vet said to let her eat what she wants and keep her weight up as long as I can.  Weight gain means more time with her.  But now I'm struggling with questioning if I've totally made the right decisions.  I have, I just feel criticized by the websites I read where it is assumed you're going to do everything because you love your pet.  I'm letting Anna die slowly and with monitoring and intervention as I feel warranted (ie I'll treat pain or the like) but I'm not disrupting everything she loves along with my life and that of my other cat when she is old enough that she could die of anything anyday regardless.  She's almost 16, as I said is a very health 10 lbs now that I feed on demand, and she enjoys her life.  Her only symptoms are constant hunger and occasional vomiting.  She'll go through a phase where she vomits and doesn't eat well, then turn around and be starving for a while.  It all seemed like everyone thinks if you really love your pet you try EVERYTHING before you even have the euthanasia discussion.  I've certainly not committed to this, but I know it is likely and I wanted to know about what I was preparing for.  So anyway, even though I'm still doing this my way I've now cried about her illness a lot for the first time and not because of anything that is even relevant to her.  Nobody can tell me how long Anna will live with this disease.  But even if I did everything that would remain true.  My vet told me that he would do the same thing in this situation; she is not a young cat and being happy is most important.  When she isn't happy then we'll make that horrible trip to the vet's.

I also have been doing something I've never done before:  I'm reading a whole year of my blog.  This has been quite a year and I want to see that.  But in the first 4 or 5 months all I can see now is how much I hated nursing home work by the end.  I had no idea, and the reasons I hated it were so political that I never realized that it was the entire process I hated, not just the politics and how I was being treated.  Now that I work in a totally different environment I see how much my beliefs about being a therapist were being compromised.

But I've wound up enormously upset and unable to sleep, which is where the concerns about the nebuliser come in.  I took a big dose of Klonopin and that's got me to stop crying at least and I'll take more meds to sleep soon if I have to.

If this med can't be used, if it's going to cause anxiety like this or mood swings, then my life is about to get tough.  I've already missed 2 months of life with this entire process.  Moving into fighting with meds is terrifying to me.