Sad

I have never made any real secret on here that my sister-in-law tends to make me crazy.  I remember meeting her and finding  her so overbearing and making myself pretend I didn't feel that way because I was so glad to see my brother happy.  And for years as angry as she has made me and as hurt as she has made me at times I have been glad my brother had her.  My brother can be an intense experience as well, and he has his own set of issues from growing up.  He's considerably older than I am and we didn't really grow up together and things were very different for him, but my father was terribly cruel to him because my father didn't want him.  He was the result of a teenage pregnancy and my father was involved with someone else when forced to marry my mother.  In later years my father would claim he never wanted any of us (even though I was conceived after years of infertility before that was really treatable so he sort of knew what was ahead if that succeeded) but that was more a way to hurt than truth.  My brother he truly resented.  My sister-in-law made my brother happy, gave him a path in life that he was finally happy to follow, and they just were a pair because they were so alike in so many ways.

Last week my mother and I started wondering if something was seriously wrong.  My sister-in-law has been away for a while because of the death of one of her parents and then she went away for a while after that.  Her trip plans were weird and we had a discussion about "could there be problems?" "no, everything seems fine".  And her behavior had been normal enough for her, right down to asking to borrow money to go away after the funeral.

At Christmas she was plain weird. One of her weirder things is that she'd never made an effort to meet my niece.  So soon after my sister arrived and I was holding my niece I carried her over and told her "now you need to meet your aunt um... Doris".  My sister-in-law did not talk to her, reach for her (despite that I was practically holding her between us), or anything and paid little attention to her the entire day.  As per usual she made me angry, once by doing precisely what you don't do when someone gives you a handmade gift and is trying to explain something about it, interrupting about how it wasn't going to work, without even giving it a shot or letting me finish my sentence.  And as per tradition she made an inappropriate joke about psych patients at dinner then commented how she has the right to do this because she worked in a psychiatric hospital for several years.  It's totally inappropriate for one thing because it's making fun of ME to say the kind of things she was saying, and also because there is a time.  I have hilarious stories from my years of working in psych and some I'll share but in the correct context  and only with respect.  I never have laughed at my patients in a cruel manner nor did anyone that I worked with, where she seems to have the idea that messing with people's psychotic minds is funny.

Anyway, during Christmas I noticed my brother was tense and that the two of them didn't talk much.  Again we blamed it on grief.

And today we found out she's moving out and  they are getting divorced.  And while I've always been willing to be rid of dealing with her I find that that was always hidden behind that "but she makes my brother happy" thing and now all I want is to have my brother's life by happy again, even if it require medication for me to handle time with her.

We won't go into what I think is the incredible inappropriateness of being at Christmas to begin with, much less accepting gifts that could have been used to help my brother out of a tight financial situation.  I know it's judgmental.  I don't care.  I'm angry because whatever has happened she's hurt my brother.  He's not perfect and I'm sure he had his role, but this has her name all over it.  I think she's been planning this for a very long time, hence the avoidance of my niece.  (I guess there's now only one other aunt to beat out for best aunt :)--JOKE.  She should have used one of the myriad of excuses available to her and not been present.  My mother suspects she was planning to use Christmas to tell everyone and that somehow my brother stopped her or she never got a chance as things were moving pretty rapidly because of the baby.  And during the one time at dinner she might have had a chance I would have prevented it by handing out my family Christmas gifts which distracted everything for a bit that normally would be chatting.

I hate this so much.  Just because her social skills suck doesn't mean I want my brother to hurt.  And there are things that are part of this which make it even more easy to be angry because just like always my brother will bear the brunt of a lot of it.

I just wish there was a way to make my brother feel better.  And there's not.

Catching up...again

My last post was apparently a little confusing.  What I meant was that if I had the information that my patient had all this private information, some of which might even help me with my job, hanging out on the internet that I shouldn't attempt to access.  Especially when I knew it was someone like me who sometimes has a hard time being honest about some things.

Otherwise, this has been a somewhat difficult week.  I had another asthma flare-up that kept me home on Tuesday, so now I have to work Sunday when I was really, really looking forward to having 3 days off in a row.    I am looking at weeks without free days in a row.  But that just makes the week that I finally have free more precious, I guess.

I then had to admit that I am not able to treat my asthma with just the mild meds I wanted.  Yesterday I requested a med that I have to take with caution because it could theoretically interact with my MAOI and I will have to monitor my blood pressure while using it.  I'll only use it when I have a bad day but hopefully it will help keep things from cycling out of control. I hate that because it scares me, but I cannot continue wheezing, then not sleeping, then having trouble getting to work.  I also can't keep coughing constantly.  It hurts, it's annoying, and it makes me feel horrible.  I also realized that this is not currently a minor issue, and if it continues and I get a cold or sinus infection then I am going to be very sick again and again I'll be back to the "Jen needs steroids, that means inpatient, and who is going to admit her" because I have nobody to admit me medically to the hospital I need to be in to get the best psych care.  So I'm going to be working on getting a referral to a pulmonology at Dr. Brain's hospital who can be brought up to date on the situation and hopefully will be willing to admit me if I need steroids.  So that will be fun, another doctor 2 hours from home.    I really hope Dr. Brain knows one of them.  Sometimes she has specialists she's worked with before who are more understanding of psych needs, such as needing hospitalization for something usually done outpatient without difficulty.

Monday my work computer's hard drive died.  So today I spent 2 hours getting a new one hooked up while my poor trainee sat and waited.  She had a rough day.  We also had a caregiver yell at me for quite a while for doing my job.  He then declined services which is a blessing as he has been making it increasingly difficult to do my job and now I don't have to.  It did mean a lot of documentation though as that chart is likely to be carefully evaluated if he complains as much as he says he is going to.  Thankfully I had the witness to the screaming, and I also had the nurse at the physician's office back me up 100% on the decisions I made (which weren't decisions but following protocol) that he didn't like.  Nonetheless, I am tired of being yelled at for breathing.  Which I don't have anyone now who will do that, but it will move on to someone else soon I'm sure.  I just feel bad for her because he yelled at her too for a minute and she did absolutely nothing but show up with me.

And I don't think I wrote about it but I had a sobbing, painful session with Dr. Mind Monday and it's a lot to think about.  I don't think that the issue at hand was what I was so very upset about, I think it's feeling so overwhelmed and disconnected from him lately.  But we got an extra session set up for next week and hopefully things will get back to normal soon.  I hate feeling like each session is nothing but "catch up and go" and that's been how the last 2 months have been.  I need the continuity from having feedback on an ongoing basis about whatever is going on and whatever I'm trying to deal with.

On the other hand, someone (B.?) asked about my niece.  She is wonderful.  She's very chubby, working hard on sitting up, wants to be involved with everything (positively refused to nap during Christmas because there was excitement to be seen and attention to grab), and is of course a genius.  She's laughing and "talking" a lot and has formed an attachment to my mom that's so cute because she'll hear my mom, turn her head to her and just grin.  Since she also drools a ton it's a really cute, gooey grin.  She was hysterically funny at one point.  My sister tried to sit her in a box but she didn't fit.  She somehow figured out that if she kept her hands on the sides and stuck her butt way out that she could stand "alone".  She was so very proud of herself for that.  I couldn't get over how sturdy she is now.  When I saw her last she still didn't have full head control and now she can sit on my hip.  She also was very funny when my sister opened up a hat I made her.  I was goofing off and put it on my head.  Someone happened to be holding her above me and next thing I knew I wasn't wearing a hat and she was giggling.  Just so very cute.

And that's about it.  I need to write my last note and get to sleep.  I'm actually seriously considering sleep and writing the note in the morning as it's almost done and will take only a few minutes.  I just hate leaving work for morning.  However, I also want to sleep, a lot.  So we shall see what battle wins......

Temptation

Here's why I could never be a mental health therapist.  I would die of curiosity.  Today Dr. Mind was trying to get me to quit sobbing (apparently when I say something is upsetting me I am deadly serious); I said "this tends to make me cry and then sobbed for a very long time".  But some of his positive words led me to start talking about this blog, of all things.  I was talking about how incredibly good it has been for me since I started talking much more openly about my life and the abuse and the effects of bipolar.  I was talking about how much support I get here, from Michal's little devotionals to comments that mean the world to me.  And somewhere in there I realized UH-OH, I just told Dr. Mind one of my biggest secrets.

He could find it.  I'd not know; I never look where people are from, and he could easily have a service like mine that says I'm from Columbus Ohio, which is hours away from here; it's not even the closest city.  If you know enough about me you can find this easily and he certainly knows.  But ethically he can't. I don't think, anyway. And that would be TORMENT to me.

Too tired for more tonight.  This may be one more lighter posting week.  I'm exhausted, my work computer broke and I may have to write things out for the next few days, I had a bad day with asthma today, and I have a weird work schedule.  However, I have a 3 day weekend and the only thing on the book is a visit with Dr. Mind.

For now, it's time to try to sleep.

A good Christmas gift

I seem to be responding to the asthma medicine.  I think I'm sleeping better (I feel less exhausted anyway), and am not coughing as nastily, nor am I nearly as hoarse today.  Plus I can FINALLY feel the goop that has been making breathing hard to do for so long loosen up.

We're having Christmas tomorrow so today doesn't even feel like Christmas.  I'm trying to get more sewing done (note a theme lately; I don't know what all I've made but it's a LOT).  Then I"m going to my mom's to help cook and spend the night.  No baby tonight, which is ok since it lets me not have all her stuff finished.

I'm making myself crazy with the idea that I KNOW I made a bib with the moon and stars and I'm pretty certain it was recently, not for the shower and I haven't seen it anywhere.  Oh well, it will turn up or not I guess.  Besides, we're about 12 bibs into this, ti's not like one missing matters so much.

Anyway, gotta go see if I made the printer do what I want.  Chances are good that would be no since we've been having a fight for some time now.  But whatever.  I've got better things to worry about.  Like the star and moon bib.......:)

Hope all of you having traditionally planned holidays are having great ones.

Tomorrow

I'm on a sewing break so that my back can practice being straight for a little bit. I'm doing fun things like getting new license plates.  Mine are so old that I can't stick any more renewal stickers on; last year I had all kinds of trouble and had to buy a 2nd one.  And Ohio came out with new plates that I do not like, so I just did something uncharacteristic and got "special plates".  They have a cat on them.  Most of the extra cost goes to spay animals and frankly I don't CARE about the cost to avoid the ugly plates.  I'm just proud I remembered to do it early this year.  Generally I remember 2 days before my birthday.

 I just received B's comment on the last post about enjoying my niece which reminded me of what I'm so excited about.  They were originally not coming up until Sunday and that is when we're having Christmas.  I'm spending tomorrow at my mom's finishing sewing if needed (likely) and making cookies and goofing off.  And they are now thinking of coming up in the evening.  Which means extra baby time!

Speaking of Christmas time to get back to present making.  I can't believe how much there is to do even though I've done so much in advance.  This is why you shouldn't spend November and December sick and sleeping.  (There are other reasons for that.....)

Diagnosis: Asthma

I was right.  Kinda hard not to be when the symptoms match so closely, especially after I'm symptomatic now after being a good bit better after someone smoked near me.  It may or may not end after this year; it may be temporary lung damage from whooping cough and it may be permanent. That much will be a wait and see.  I'm guessing though that my lungs took a hefty hit with the whooping cough because my voice is still not back to normal.  From what I've read it may never be quite the same; right now I have no idea as asthma flairs make it worse as does the time of day, how much I've talked, etc.  The exhaustion is probably from waking up coughing and I'm on another med that should be my main med for this which will hopefully help at night (Singulair). I'm also continuing Spiriva for another 10 days then will determine if I still need it or not.
 
The trick is that these are the only 2 asthma meds I can take.  I was afraid of that, and actually let him know about 10 days ago that I was developing reasons to believe this was asthma and that I realized treating it was going to challenge him.  I did not ask the obvious question of what happens if these don't work.  I pretty much know.  If I continue in an acute fashion as I have been for so long and continue just being sick I will have to do steroids.  If this continues long-term and these meds don't work then I assume several things happen:  we get creative, I see a specialist (probably at the big-deal hospital where Dr. Brain works), and compromises will be made.  Whether this is breathing treaments again (presumably with the slower than molasses stuff as I have few options for those as well), use of Xopenex which is contraindicated with MAOIs but may not be horribly contraindicated meaning we may be able to try it with me monitoring my blood pressure closely (but this also left me feeling a bit agitated when I took the couple doses I did take), or hospitalization to get everything under control with steroids and try to go from there.  I suspect that is the one that happens most readily, partly just to get it controlled enough to see if we start from controlled if I can maintain that with the wimpier meds I can use, rather than trying to make the inflammation go away without using anything very strong at doing that.

When I was in college I had this thing (ok, it was a learned behavior from childhood) where I did not take pills.  Period.  I made it from freshman year of college (1995) until 2002 with no antibiotics for illness, although I did have a round in grad school for an infected toe.  I occasionally took something for a headache. That was it.  I did take allergy meds in the summer, but hay free and camp counselor is not a good combination, and that was usually only 6 weeks and then maybe a few in the fall. That is why I delayed antidepressants for over a year of really needing them:  I hated the thought of meds that I would rely on, even if it would only be 6 months or so.  Since I never believed I was sick that pretty much made medications pointless.

I did have a point about meds.  As thankful as I am for the meds that have saved my life and that we finally have found a combination that works well and is adjustable for me, it is still also true that since the day that I was told by Dr. Guru that yes, I had bipolar disorder and due to how rapidly I cycled, the severity of my symptoms, and a few other factors that there was no way that any one medication available at that time (or now) would ever work for me and in fact he suggested starting with a 3 med cocktail in a clinical trial that I fit the criteria for perfectly (ie people with severe rapid cycling who had not gotten any control with other med trials).  That was 8.5 years ago ago and I have been on many, many cocktails since then.  And over time as the intensity of the meds changed I started adding on more and more other meds to counteract side effects and damage caused by these (granted the damage really was caused by lithium toxicity, NOT just from taking meds, but lithium toxicity added a thyroid pill, an acid reducer thanks to my ulcers from vomiting constantly, 2 pills (only b/c they don't make the dose I need of a medication to make my kidneys function correctly).  Antipsychotics caused me to add Provigil, which morphed into a new version called Nuvigil, to allow me to get to work something like on time.  Seroquel added all sorts of different meds for constipation; at one point I was taking 8 pills and a dose or 2 of powdered med daily for constipation alone.  Now I just take 1-2 pills for that.

Asthma meds are novel in that they aren't caused by psychotropic use.  Yet it's weird to think that without bipolar I would just now be taking 1 pill and 1 inhaler dose daily and instead I take something like 17 pills, 1 patch, and 1 inhaler dose daily.  This is the first "big" (size is very relative; as long as these meds work I'll have pretty mild, controlled asthma) problem I've had besides bipolar and all the consequences of treatment for that.

Anyway I have some more sewing I want to get done tonight.  I am pushing the edges of time to finish things, even though I finished a big pile today.  That's ok, we'll make it somehow.

Lesson Learned

Months ago I was perusing Etsy for a Christmas gift for my older brother.  I found an e-book on brewing beers, something he enjoys.  I bought it and paid no attention until a couple weeks ago when I discovered it is nearly 700 pgs.  So this $1.50 (and I assumed neglible cost in paper and ink) book is costing me tons of money because I've had to buy 2 reams of paper, 1 black ink, 1 colored ink, backups of both as I'm not sure they can complete the whole thing, and one enormous binder.

Always pay attention.......

Anyone?

This has been on my mind a lot lately and I just suddenly decided it was time to share. Actually it just occurred to me that there might be someone out there who faces this situation.

I've been talking over the last few years about a lot of remodeling in my house.  I've done a lot of things, and am now really 3 major projects (and a thousand minor ones) from done.  One of these is replacing flooring, which I'm hoping to do this spring.  The other two are big, expensive projects which will require quite a bit of saving to do (total kitchen redo, total bathroom redo which includes replacing subflooring, fixtures, and hopefully moving a nonweightbearing wall in a foot so I have a linen closet.

For a long time I just couldn't see selling this place after it was done.  For one thing I wanted to enjoy my remodeling.  I grew up in a home constantly being remodeled and nothing ever was finished.  I consequently grew up in a not very nice environment that we were taught was great because "it's being remodeled".  Um, so that's why our kitchen counter was plywood for 12 years?  For another it's making progress at being paid off, something important when you're in my shoes and don't really know how long you'll work.  Plus there's little market for homes here right now.

But I've decided that if I'm still at this job and as happy as I am now in 3 years I will probably try to sell and move much closer.  My mother and I were talking about this and she was telling me what a good idea it is.  Then she paused and said "Plus, down the road that makes you a lot closer to [sister] if you get sick and need help."  This clearly was something that has been discussed.  I try not to think about my mother being gone or unable to help, leaving me having to turn towards a sister who certainly never asked for the responsibility of an adult who gets very sick from time to time.  I asked my mother then if she and my sister had talked about that part of the future and she said only that they had and that my sister knows someday that she'll probably be the one looking out for me if I need it.

I keep wondering what that is like for my sister.  She's certainly never seemed resentful or angry about it, and hopefully I'll be doing as I am now and even when not psychologically good for long periods I am functioning pretty well.  The physical illness did in my house and I have needed cleaning help, but that's the physical stuff not emotional.

I just wonder what it is like to be in her shoes and know that someday she'll be checking in daily on a sister who can be fine one day and very much not fine the next.  Does anyone have experience with this?

I know myself......

I did some sewing until I thought I was sleepy.  I took meds at 7:30.  It is now 7:33 and I'm pretty sure I'm going to go finish my stupid notes for work because I'm not relaxing and I don't want to keep sewing right now.  I'm doing something incredibly simple and just putting an outside seam on diaper liners (fleece, not disposables) and I have like 24 of them.  It gets boring.  I have other things to sew, a number of them, but I'm aware that I'm too tired to be coordinated.

So that means try to settle down in here or do those notes.  I really hope for settle in here.  The notes won't take long and I'd like to take them with me to the dr's to do while I wait.

This is the first time I've ever had paid days at Christmas without having worked to make up the days.  I am not trusting the concept.........

Tomorrow I know I'm going to miss Dr. Mind.  I'll be so glad to get into a routine with him again.  When we miss as much as we have the last 2 months each session is awkward because we play catch up and then we both know better than to start down any path that could potentially become painful in any way, shape or form.  That's even more true this time of year.

Oddly though Christmas and my birthday aren't bugging me.  I think some of it that I've been so sick for so long that Christmas still seems far off.  Partly it's because I don't care what I have to endure to get to actually see and hold my niece.  I've even requested spending my birthday with her which is the first time I can remember looking forward to my birthday in at least 15 years, since the birthday from hell.  Partly it's that although I did more expensive things overall I have fewer gifts I'm handing out because I mainly got people big presents.  And it also helps that I am well enough to have multiple interests so that people didn't even ask what I wanted, I am just getting things.  I haven't had hobbies or things I wanted in so long I can't remember.

We'll see how I feel in a few days, but for now the holidays are not seeming traumatic.

Survived

I did it.  I got all my patients seen in 3 days.  I have some fast notes to write up but that is it.  Those are waiting for tomorrow I think as I'm worn out.  I'm seriously considering taking my meds and going to bed at 7 and I probably will.  My hesitancy is that sometimes if I do that I somehow succeed only in waking myself up and then I'm groggy and awake until later than if I did bed more normally.

I go to Dr. Body tomorrow for a lung re-check and hopefully a diagnosis.  There is more and more evidence it is asthma; I hadn't been wheezing for several days and then I was in a smoker's home yesterday and have wheezed ever since.  Where I work has a lot of pollution and I have more trouble breathing/coughing when I'm down there and even by the end of the week versus the beginning.

I feel like I forgot my brain when I left there today.  So tired....But that's ok because aside from the appointment in the morning I get to rest until Saturday, and even then we're just hanging out as we're having Christmas on Sunday.

Anyway a better post after I'm coherent.

Yeesh

I just deleted someone I've been following for a few years from my google reader.  I generally will leave blogs I don't even read on there just because I hate deleting.  But this one has had several statements I've been bothered by, and I just found my endpoint:  If you are going to help the homeless don't turn around and complain when some of them are mentally ill---and don't withhold your help on that basis.  Really????  To do so is Christian HOW?

Merry Christmas........

(I'm really not in this awful mood as this sounds like.  I'm tired but I got a lot done today and I still have a lot of paperwork to complete.  I just hate people's attitudes sometimes.  I quit reading facebook (which I just joined) because I don't have time to bother with figuring out how to hide a distant relative who made "retard" jokes which multiple people actually "liked" her for.  I'll go back when I'm not too tired to find a way to get rid of her.)

Can't be worse

Yesterday was truly a bad day.  I did something so embarrassing I don't want to talk about it, and it truly was because of bad directions but still, so, so embarrassing.  I forgot something important at a pt's home.  One pt. was sick and couldn't work.  Another I sat 30 minutes trying to wait for the nurse to fix his blood sugar; no dice. A third the assisted living double-booked 2 therapists-again.  So I'm working my butt off trying to get everyone done and getting absolutely nowhere.  That means today is terribly stressful again.  I'm trying to avoid having to work Thursday, a day I'm supposed to be off, because I would have only a few patients and therefore would have a mess as I have to be in the City 2 hours away to see Dr. Body, and have no desire to drive up to see him, then down for 2 hours, then back home.  I would lose money on it, even at holiday pay, and also a day that I really need the time to finish Christmas things.  So after running around like crazy all day I had a grand total of 2 pt. visits that really were worthwhile, one that just upset the patient, and 2 that were pointless.

I'm kind of scared to go in today.  I don't want to be that stressed again, and I will be unless something odd happens and I have a few cancellations.  Otherwise I have no clue how I'll get through this schedule.

Speaking of, I suppose I need to leave.  I really, really don't want to......

Not needed

The day I went to see Dr. Body first with whooping cough he told me that the hardest part of treating me is that I'm ok to take the basic drugs, like antibiotics, the ones that keep people from dying like they did 100 years ago, but that keeping me comfortable is a whole other issue, because quality of life drugs are usually either something I'm allergic to or that I can't take for some other reason.

Well, I am now allergic to Bactrim, I'm pretty sure, which means all sulfa drugs and drugs related to sulfa drugs are out.  About a week ago my lips began to peel like crazy and became puffy but that seemed consistent with how sore they were to me.  I also became more flushed daily but thought that it was due to dry skin or coughing or whatever.  The last 24 hours I was on it it was clearly a rash.

I know that with my history nothing gets a second chance, so unless something concretely makes Dr.Body know that I wasn't reacting I'm done with sulfas forever.  And I couldn't be more underwhelmded.

How to lose 10 lbs. in 5 days

This post probably only applies if you are on a lot of medications.  Psychotropics are well-known for causing serious constipation but so are pain meds and other meds.  I think even my inhaler can.

Regardless, this post is about constipation so if that bothers you, this is your warning.

I've written about it before.  I'll write about it again.  Because it is physically painful, because it is part and parcel of bipolar disorder for me and others, because I am fascinated by how much well, crap, we can hold.  This time it was 10 lbs.  T.E.N. P.O.U.N.D.S. of POOP.

My situation is complicated by, as per usual, restrictions on how we treat it.  Because it comes from being dehydrated chronically because of diabetes insipidus thanks to lithium, miralax which adds water to stool doesn't help unless taken in huge doses that are not good for you.  Other meds risk further dehydration and a worsening cycle of no solution.  I can't use thing that irritate that colon because they usually don't work and also can just make it worse.  My colon has stretched drastically over time which doesn't help but can't be treated.

The thing though that anyone else who suffers with this one needs to know is that a new med is available that is awesome.  It's called Amitiza and it's horribly expensive, unfortunately.  However, you may get lucky and have your doctor tell you "I thought this was going to be great and got all these samples and then found out that not many people really need it", which resulted in my getting a TON.

It's supposed to be a twice daily med and technically is for people with no known cause.  It increases intestinal lubrication. For me, I only have to take it once a day, and then if things get backed up twice for a couple days.  The only reason things got so bad now is that I carefully held it for a few days when I started the stronger antibiotics because we all know what those do.  Except for me, apparently.  And by then it just got lost in the crowd of psychotropics, cough meds, etc.  And then suddenly it had been 10 days or more and only 2 pairs of scrub pants, the ones leftover from before I lost weight fit, and I still didn't figure out it out at first when i had gained 10 lbs. in a few days, then suddenly I realized WHY, and prepared to fight.  I'd never tried amitza against this before and I was prepared with the heavy duty meds and suppositories.  I did not need a single one.  In fact, Amitza started working before I was prepared, when I was still out shopping.  That was unfortunate.  (no more will be said there).  But sure enough all weekend at intervals without any need to do more than take the usual amount after the first day or two it has done it's job and I have lost 10 lbs. this weekend.  I am so thankful for something EASY.

There is no theme here

I haven't been writing because I've been typing.  I have done so much work at home this week.  It's because of trying to get through a zillion patients fast, and I have not succeeded.  But I am trying.  Today killed me though.  I had today planned to knock off a bunch of visits and some of the driving for the week.  Instead we had a huge snowstorm with roads that were maybe 30 mph, usually less, with my AWD SUV in lowered gears for much of it. It is so weird to drive that in the snow and not have to scared of constantly sliding.  I slid very slightly once and it fixed it.  I can almost relax even when it's bad, although I know enough to stay very aware.  When I lived in Michigan I had a Festiva, essentially a tin can on wheels that weighed about 25 pounds.  I used to be amazed that I managed to stay on the road while there'd be lines of SUVs that had spun off because the drivers were overconfident.  I promised myself to never do that.

I'm also writing a very long post that will see the light of day eventually.

And I'm coughing.  I'm pretty sure Dr. Body's guess of asthma was right.  I am not sure but that is making sense.  We'll be more sure it's not bacterial in a couple days; my last antibiotic is tonight so I'll be sick by Monday if it's bacterial since I am still symptomatic.  If I ever start writing about not believing myself about this again feel free to tell me to look in a mirror.  We had our company Christmas party tonight and I put on makeup, which I haven't done if forever.  Because I"m nearsighted that means shoving my face into the mirror.  I couldn't figure out what the weird dots were, like something had been resting on my face when nothing had touched it.  I've known for weeks that I've been very pale with pink cheeks but since I'm very fair I have red cheeks a lot and I also get dry skin easily this time of year on my face.  Well, looking for a couple minutes made me realize I have petechia (broken blood vessels) all over both checks, my neck and my forehead.  I knew I had some broken blood vessels in my eyes as my eyes are bright pink when I first wake up, but I didn't realize my whole face was covered in it. I suppose that explains the headaches lately; if I cough that hard all the time my head should hurt.

And next week is so over-scheduled that I'm frightened.  As is today, come to think of it.  But the weekend is coming.  Slowly.

The right thing

This one is easy.  Please go to this page and sign the petition to help save the life of a Pakistani woman who has been sentenced to death because of religious politics in the region.

Thank you.

Something Good

I've been pretty honest on here that when I took the traveling job it had a great deal to do with the money and that I made enough to catch up on debt, much of it acquired in the 8 months of disability in 2 years that made up 2006 and 2007.  I've managed to fix my credit completely after being rated "poor" 2 years ago.  There were several years I had to pay extra premiums on my homeowners because my credit was so bad.  But that's not the point.

The point is that I've been trying to start giving back.  My plan is that when I'm settled into this job I can move into tithing although it will be to charities rather than churches.

A blog that I found while not doing well that made me laugh aloud is Cakewrecks  I've had them my reader for a while and have found they are consistently entertaining.

They have an annual 12 days of Christmas thing where every day counting down to Christmas they ask readers to donate, if able, $1 to a featured charity of the day.  They pick really good charities and it's done through First Giving which should mean it's a safe way to give.

So, please join in if you can.

Question answered

I don't know why this is being funky with formatting but it is.  Regardless, WinnyNinnyPoo asked a good question:

I'm not sure if you call it addiction if you are adding something your body is short of and needs. Are diabetics addicted to insulin?

I was on clonazepam for a few months for my headache disorder, and unfortunately the side effect of making the headache worse outweighed the benefit of helping me sleep. Glad it helps you sleep and helps with anxiety. You do have withdrawal from it if you don't decrease gradually but for me it was minimal.

I think that yes, what I have is addiction.  Not in a bad way, but controlled addiction.  Do I care?  Not at all.  Am I surprised?  Not at all. Don't forget, my situation is a little different than most patients. I have been on benzos constantly for somewhere around 10 years now.  I've been on moderate to high doses nearly all that time although I've had a few random months without, although that's long ago.  I don't take normal doses of these meds. In fact if I am hospitalized it would not be shocking to have someone question the amount of some of my meds.  My body works strangely.  I either over-respond or under-respond, usually under.  Therefore my family doctor repeatedly has told me throughout different cocktails that he has never seen anyone take what I do and be awake, much less working, driving, etc.  And then the next time I go back I'll be on even more and still functioning.  There was a period of time that I was on the highest doses of 2 extremely sedating meds at the same time that he had seen on either drug, and I was still taking benzos and other sedatives.  I was given a morphine shot last year when I was being checked for appendicitis and they thought I had to be asleep and talked about my test results while I laid and listened helplessly because I had the rails up and no call light.  I never fell asleep.  I'm just used to heavy sedation.  My body handles medications so differently that at one point I was taking more depakote than any female outpatient at the major teaching hospital where I go, plus I was on a benzo and other sedatives as well as a high dose of seroquel.  In fact I actually was on the highest dose of the 2 combined of any patient known there for a time after the other person on what I was had a dose cut because of side effects.  I have also required 2 benzos together for a time.  But eventually we went to high dose Klonopin, usually used short-term and that was the hope for me, but we also did it knowing that hope for me isn't a promise we get what we want, and thus far I have needed to continue indefinitely this extremely high dose.  My current situation has me 50 mg from the FDA approved maximum for Seroquel but my doctor says she will go much high for me.  It's just how my body works.  It does, however, make things different than most people's med experiences.


In a typical situation you might have a little withdrawl.  However, my body is primed to expect benzos, and not only that to expect a LOT of benzo.  For most of the last 15 months I have been on huge doses of them and for several months on high doses of 2 together.  In my case it is not a little withdrawl.  In fact I reduced my dose slightly a few months ago by cutting back on one pill and Dr. Brain had to tell me I had to take that pill again because I couldn't cut 1/4 of my daily dose with significant withdrawl that caused major issues for me.  So when we talked about backing down a dose yesterday we knew it might not work.  I was just startled at how significantly it didn't work and how quickly the need to take it if I wanted to function was apparent because I've always escaped that in the past even when there was no reason it shouldn't have happened.


There is also the implications of getting to a lower dose if I ever get stable enough to try to go back to the target.  When we went to the very high dose I've been on since March (?)  we knew that getting me off could be hard as to reduce I have to be stable for a while first and it's been a while since I've done that.  We also knew that I had chosen to start talking about some very intense stuff and that the medication was justified as my PTSD was raging out of control.  As it has turned out I've continued to battle anxiety and continued to deal with a great deal of pain in therapy up until I got sick.  For now therapy is glueing me together to deal with a few more days and that's not a good time to take away meds.


But can my body function at all normally with klonopin?  Nope.  Are the symptoms of not taking what I'm used to just minor discomfort as I've experienced the few times I've had some withdrawl?  Nope.  This is full-blown GET THAT DRUG IN ME orders from my entire body.  Which is fine.  We actually knew that I might have increased difficulty getting off it since I've been on liquid vicodin and pills of vicodin for 6 weeks for coughing as needed.  I weaned down after using it for 2 weeks and did ok but I have still been using it occasionally.
It's just never happened before and therefore is a weird fact.


As for what does it mean, nothing.  It's not like someone like me will need intense intervention to come off or anything; I just will need to be careful to not miss doses until the time comes that we can lower it, and lowering it will probably need to be the priority.


But in reality big deal.  I can't lower my non-additive meds either; I NEED them.  And as long as I do I'll take them.  I care very little about things like that; once you make decisions to continue taking meds that are hurting vital organs you stop worrying about lesser effects.  And I made that decision years ago.

ETA:  I do not intend to go off Klonopin or reduce my dose at this time.  All we were hoping was that if my body was overwhelmed by Seroquel it wouldn't notice the change.  That didn't happen.  No big deal, I'll just stay on the high dose Klonopin and manage the Seroquel the best I can until i stabilize.   

I am an addict

When I first needed antidepressants I fought tooth and nail against it because I'd heard so much incorrect information and so many stereotypes at my conservative Christian college.  I didn't want addictive meds, didn't want to be dependent on medication to be happy when I felt I could learn happiness if I could just move beyond my past. After I became so sick and so deperate that I knew I had to make a difficult decision I went to the health center with the psychologist's recommendations (unfortunately verbal).  I remember which of the 3 exam rooms I was in that day, the yellow and blue cinderblocks, and that the physician's assistant refused to listen to me and insisted if I wasn't sleeping I needed xanax not antidepressants.  I kept saying "that's not what Dr. Mind the First says! He says I am depressed, have been depressed a long time, and need antidepressants!".  Finally they LIED to me and said they'd ask Dr. Mind the first and call me if he disagreed.  (Pre-Hippaa). So I took the stupid Xanax, barely could get up the next day, and then fell asleep IN CLASS.  I then proceeded to sleep nearly constantly for 3 days. I stopped the drug and spent the next few days furious with Dr. Mind the 1st. How dare he do THAT to me when I was so scared of meds to begin with?  Turned out when I angrily entered his office that nobody ever talked to him and that he was quite opposed to Xanax. I was sent to the doctor again that day with a very specific letter.  That time they didn't bother to shut the door to give me privacy in the same tiny exam room, but they did give me Paxil.

After the Xanax experience I was even more opposed to anything that could be addictive or have such strong effects.  I did use Ambien in college successfully after I took myself off my antidepressant against my dr's advice because I felt that even though I had been through severe depression and PTSD and might not make it without meds I deserved a chance. (Ambien isn't addictive although you do develop a tolerance to it eventually).  I went through a number of meds in the next few years but none were addictive at all.  When it became clear very soon after I started my first job that my antidepressant wasn't working well anymore and that my anxiety was intense I started playing antidepressant roulette.  I went through 2 or 3 family doctors before settling on one who I liked and trusted, but even he kept doing the worst thing on earth for potentially bipolar patients:  letting me rapidly max out on an antidepressant then changing to another.  He tried for about a year before I found myself "in trouble".  Basically Christmas happened and I flipped out.  I had been struggling even more than I was before since 9/11, (now I realize that it triggered my own PTSD in crazy ways), and generally declining. There was a specific incident/nightmare so terrifying that I couldn't recover from it and ultimately a friend helped me find and get into a psychiatrist.  She immediately changed my antidepressant to yet another one.  And about 6 weeks later when my friend came to tell me I was possessed and not a Christian per a vote of people who don't know me on the same day that the Columbia, something I had been avidly following in the news, exploded just moments before I woke up so that I woke up to the "something awful has happened and we don't know what" and fixated on things like what was found in what radius (which included body parts) and my mind went out of control between the 2 things.  I could not quit crying and had to take days off work, pretty much my first sick days ever.  I finally called the psychiatrist and was given ativan.  I started at a very low dose and then graduated to a fairly normal dose (.5 mg twice daily). I was so tired of being in a constant state of panic that I didn't even fight it.

Over the next few years my ativan usage waxed and waned.  I went through one period without any.  Other times I was allowed to take up to 3 mg/day (or something like that).  I know at one point I was taking 2.5 mg just to sleep at night, along with other sleeping pills.  But I always adjusted well when it was time to back off and like I said I could go off it cold turkey from time t time, sometimes for a month or more.  In 2007 (I think) Dr. Brain and Dr. Mind discussed my situation with anxiety.  Both believed it was heightening everything.  I wound up on a combination of ativan morning and night and a mild tranquilizer/anti-histamine taken 4 times during the day.  This allowed me to work harder on some of the underlying issues with Dr. Mind and overall reduced my anxiety.

It wasn't until I was in the hospital in 2009 that out of the blue I realized I'd developed tolerance to ativan.  Presumably this had happened during the month before admission when I was taking a great deal of it.  Once I finally realized this and asked for a new anxiety med I was switched to klonopin and I remember the sheer relief of that stuff working right away along with my doubled dose of Seroquel.

I left the hospital on a moderately high dose of Klonopin.  Over the next month I had so much anxiety that all kinds of things were tried including adding ativan, the antihistamine, and eventually low dose valium which finally calmed things down.

We don't wean my meds in the winter usualy.  And after the hospital I was so traumatized that although I came of valium easily, reducing anything else wasn't a consideration.  Dr. brain told me that for someone as sick as I'd been that I had to hold stability for a year or more before backing off much of anything unless there was a cause.

Eventually things happened that made my PTSD spiral out of control.  I could not calm down.  And so I was increased gradually to QUITE high dose of Klonopin.  For a while I was alternating half doses of konopin with antihistamine every 2 hours just to make it through work.

In the recent months I'm pretty much totally dropped one dose, leaving me me a morning dose and 2 at bedtime.  In the last week I've give up the daytime dose not because I don't need it but because it lets me stay awake.  Today with Dr. Brain we decided I could try cutting one at night to help me be able to take the Seroquel dose I needed.  And it turns out that my body won't relax without the full dose.

So, addiction it is.  (At least at this point it is an expected and controlled one.........)

Catching you up

I haven't posted much lately.  Basically I'm sleeping and working and that's it.  I'm still not feeling very good and the depression is ongoing as well.  I'm not a highly functional person right now.  As much as I love work it is too much right now and I have to stick it out until Christmas weekend before I can rest much.

I am responding a little to the meds I'm on.  The coughing is less and more in clusters now than it was a week ago when it was every second.  But it's still with me and until it is gone and stays gone a while I won't trust it much; I've responded partially to antibiotics at least 2 other times then gotten sick again.  I will say I MUCH prefer the 30 seconds of bad taste in my mouth from Spiriva to 60 minute nebulizer treatments.  Everyone seems to agree that I can't take this much longer and everyone wants to avoid the next step.  But I've expressed my wishes now to do steroids to both doctors if this fails.  So that would mean going to the hospital right around Christmas.  Or even for Christmas which sucks for messing up Christmas for my family but if I went the day I see Dr. Body (the 23rd) then I might not miss as much work.  At least I'll know by then how I'm doing so I can be prepared.

I talked to Dr. Brain about hospitalization today.  To my great relief I'll be able to be on a medical floor with a consulting psychiatrist who will give PRNs to keep me sedated as needed.  She said I could do it closer to home but my preference is to be at the hospital where I see her.  For one thing she has influence over the psychiatrists there.  For another I am afraid of the psychiatrists in the city where I would be if not where she is.  They did some pretty horrible things prior to my diagnosing myself and finding real help and I don't want those doctors.  A lot of them also refused to take me on their regular caseload without even assessing me, just based on my diagnosis.  And I have less and less trust in doctor's ability to understand my needs after having arguments with doctor's who don't seem to know what an MAOI even IS.  No matter what happens if I'm near her I can reach her and she can talk to whomever is treating me; she said she doesn't do hospital consults but her office is with the people who do.  So that's going to be the plan.

Psychiatrically I'm not in great shape.  This has worn on me badly and so I am depressed, but I feel even worse than I probably am because in my mind being tired like this is a WARNING!  NOTIFY TREATMENT TEAM AND BE ON ALERT and in reality a great deal of the fatigue is physical.  However, being sick for so long is scary and makes me feel powerless and so that does not make this easier.  Counting the period of runny nose for several weeks before whooping cough (that I called allergies) I've been sick for almost 2 months now.  I also have not slept well in all that time because I can't get comfortable and I think I wake up coughing frequently and reposition myself but I am so sedated at night that it is impossible to know that for sure; I do lots of things at night in my sleep.

Partly I feel bad psychiatrically because I'm not myself.  I hate shifting patients around to different days and then working a weird schedule.  I hate that I'm forgetting things and messing things up at work.  I hate that my patients aren't getting the energetic therapist they deserve.  My house is horribly messy/basically dirty.  My mom is going to try to come help tomorrow but may be held back by snow.  I hate that I am not working at my usual rate, some of which is my fault and some of which is not. I'm too tired to cook and most things don't appeal and I'm gaining weight to show it.  And the thing that would help the most is a Seroquel boost.  I did this last weekend and it helped, but since then I've been so incredibly tired I've had to cut my Seroquel and klonopin doses just to get out of bed.  Tonight I took the dose I need at 6:30 pm so hopefully I'll sleep by 8 or so and be ready to work on time.

I look sick.  I always have fair skin. Now I have pale,pale skin that is flushed from heat, cold, fever or the exertion of coughing.    Today I noticed that even my hair doesn't look like it feels good.

So, there is a tiny bit of positive news and the rest of the news is that I am struggling hard to make it through this and that's pretty hard when you don't even know what it IS.

I don't think there is a whole lot else I can say right now.  Well, especially right now as the meds are doing their thing and I need to set alarm clocks, feed cats and get snuggled up.

Hopefully I will be able to think well enough to not be so quiet except for medical updates soon.

In lieu of a real post

• The dog is fine. Our vet, with almost 40 years of experience, had never seen the type of thing she had grow on an internal organ.  Apparently she and I have more in common than I thought: crazy issues. The tumor was so big that she is visibly smaller.  The vet offered to show my mom; she declined.  I'd have looked, of course.  But it was just a fatty growth and she is fine and recovering well.  I had to go to my mom's house and use therapy skills to do a sheet lift to get her out of the car, but once she was out she's been walking around and doing well.  She was a bit miffed at my mom yesterday and when I got there she was so happy to see me.  I was so proud of her because we had to roll her onto the sheet and then I lifted her front until it was out then had my mom hold that when I lifted her rear and she stayed calm and let us.  Usually she's a neurotic mess.
• I am very tired.  I actually slept until nearly when I should have been at work this morning.It worked out, but so embarrassing.
• The breathing med may be helping a tiny bit.  By tiny I mean TINY but it is something.
• I have decided that steroids may be the last resort and I've begged to avoid them, but based on whatever I work out about them with Dr. Brain I am ready to do that if this fails.  I can't keep going like this and at least if I got through some sedated steroids I'll get some drugged rest.  I can't function this tired.
• My tiny little baby niece has hit the 95% for weight and head size.  She's a round little thing.  I saw new pictures today and she is so cute.
• Today marks 10 years that I have officially been an occupational therapist.

A real post sometime.  When I am not so tired I want to curl up and die.

Gracie

There's another reason I've been so emotional and struggling here.  The first year I was working I had a chance to get an adorable 1/2 lab, 1/2 golden retriever puppy for my mom. Her golden was approaching 20 and I didn't want her to suddenly be without a dog if the elderly one died.  (She lived another 2 years amazingly).  So I worked out this huge secret.  I didn't get the puppy until the Friday before Thanksgiving when my mom would be on break. I actually had her at work for the whole day; I carried her around for my entire day. I had my mother's friend take her out and he invented ridiculous errands to do, then when I called him with a code ring he abruptly brought her home.  I had parked up the street and hidden in my basement room.  When he thumped on the floor I brought the puppy up with a big red ribbon and said Merry Christmas.  It was hilarious because she immediately assumed the puppy was from him.  When we got it straight Gracie quickly became part of my mother's life.

Gracie is a weird dog. She has bizarre fears.  Thunderstorms require sedatives.  I had to sedate her when I was dog-sitting with whooping cough b/c she is afraid of coughing.  She also will leave the room if you have a spoon and bowl in the living room.  As a puppy she once barked at a broom for hours.  Where my mom used to live she became afraid of the driveway.  She wouldn't walk up and down stairs until she was about 40 lbs.; until then my mom carried her to her crate.  She failed obedience school, which was hilarious b/c if the male teacher had her do something she was perfect, whereas my mother had a huge struggle just to get her to walk from the car to the class.  I've seen her refuse to go for a ride, which she loves, because the car wasn't an SUV or because the seat was folded down and that is NOT how she rides.  She is just different.

We bonded that first day and she loves me and I love her as much as if she were mine.

Tomorrow she goes in for surgery to remove a large tumor from her spleen.  There is a 50% chance is it not cancer.  My mom has had to make some incredibly hard decisions including writing a letter to the vet saying that if this is going to be rapidly terminal or if Gracie will only suffer for the remainder of her life that they are to not wake her up.  If the diagnosis/prognosis isn't clear or it appears good or they can remove it all then Gracie will hopefully be home tomorrow night.

We are very hopeful.  Gracie has been through a lot medically the last 6 weeks and the tumor was an incidental finding.  She is acting totally normal, including wrestling hard with the other dog for 45 minutes last night while my mother was writing the letter to the vet.  She has no pain, no changes in behavior, and well, for a weird dog she shows her feelings through behaviors.  Even if it is cancer it may be totally removable.

But I'm scared.   I can't stand the thought of life without her and thanks to feeling like crap I haven't even gotten to go see her to give her a hug and a belly rub (her love language).

Getting through tomorrow is going to be hard, and that would be true if I felt ok, which I do not.  Between my mom and I our vet has now had the hospice for pets talk twice in 6 weeks.  The difference is that my cat DOES have something terminal and her dog MIGHT. Nonetheless it is a rotten conversation even though He's been totally supportive of what both of us have wanted (in my case I don't want testing or treatment of any kind; I don't want to monitor numbers because I know my cat and when she doesn't like life anymore I'll know.  I do watch her weight and make sure she has tons of food to eat, but that is all I will do for her.  If her kidney failure makes her uncomfortable and there's something easy to make her comfortable that extends her life we'll do it, but I will not change her diet, I will not do a lot of testing that just leads to dread on my part, and I will know when it is time.  This cat and I have been together for 13 years and I've been around her for 15.  She can read me and I her.  The same is true for my mom and Gracie.  It's very hard to pray that if she's going to die that the vet is able to make a clear decision tomorrow though.  As much as I hate losing her I would hate more having her recover from surgery, deal with pain, and be gone in a few months, especially if those months prohibited her from being happy and doing what she wants.

So anyway, please pray for my mom and for her Gracie.  It's going to be a long day for both of them.

last straw

I wound up home again today and will now have to work on Sunday to make up, but I felt so lousy I just couldn't try.  My doctor's computer system remained down all day but I was able to get the results from calling the office and forcefully not letting the woman hang up until I had both tests. They were clear.  So I don't have pneumonia, which is good, nor a sinus infection, which is kind of too bad b/c we know how to treat that.  I have questions for him and the system won't be up until tomorrow sometime.  Stress.

I was paid for the first time Friday.  I had to be paid by check because of a problem with my direct deposit information.  Unfortunately they paid me very wrong.  I'm salaried during my 90 day learning period and they paid me instead my hourly rate for office work/meetings which is substantially less.  I realized this Saturday and left a message for the correct person, also asking her to get back to me, stressing I was home sick, please call me there.  nothing.  I called again today, again begging her to call me back because I have a huge overdraft and have not wanted to cash the check since it was an error and I don't know how they handle that.  Again I said to PLEASE call my home # so that I could borrow money from my mother if I needed to.  Nothing.  I just woke up a little bit ago and am going to take meds and go to bed soon.  I checked my work voicemail and she left me a message showing she never listened to a word I said, something about I could cash the check I just needed to correct the direct deposit.  IT'S NOT THE RIGHT CHECK!!!!!  So I left her another message, crying (which I didn't mean to do, I'm just so sick of being sick and need things to go smoothly and am tired of them not), explaining AGAIN.  This person is very nice.  She also isn't great at attention to details, causing a big ordeal with being fingerprinted while on vacation and needing to submit to be reimbursed for that,  and also she forgot another part of new hire stuff as well as sticking me with little to do for a day because of not adding me to the computer system before my hire date.  But for pete's sake, this has cost me a TON of money and she's the one who entered the incorrect information in the first place.  "I'm sorry and will fix this ASAP" seems in order.

So, right now my life is this:  I am totally stressed about both money and work.  I'm exhausted no matter how much I sleep.  I'm coughing and feel crummy and can't do a thing about it except pray these last 2 meds work because if they don't it's time for steroids because anyone else would have had them about 2 weeks ago because of the inflammation in my breathing things.   I can't have them without risking mania and if I have to do it I want to be in the hospital.  Saturday I have to set up a plan for this with Dr. Brain. The current plan is to try to get through this course of antibiotics and hope it works, but if the trend continues and I feel worse ultimately we won't make it 10 days on this.   I also am completely upset because I keep missing work and it's only my 3rd week.  I'm making it up but if I go on steroids it will be more time off and I'll need to explain some of what is happening.  I probably need to do that tomorrow anyway since it's a likely thing.  Keep in mind that I can be released from my contract for missing work during this time and being able to say that they are treating something specific would be helpful.  I am overdrawn at the bank despite having a paycheck in my purse and I can't get the right person to listen to FIX it.  And tomorrow I have to work no matter what.

I also have reached my usual point of if no testing shows anything wrong am I making this up?  Am I subconsciously coughing for attention?  I could tell yesterday that my dr. doesn't think so, but he has no more ideas.  I think he is concerned I've developed an allergy and have asthma. Seeing a specialist for that is high on  the list and again, I don't know HOW because of work.

And now I can't quit crying.  It was actually somewhat easier when I thought this was just more reaction to pertussis.  I'm not 100% convinced it's not; what Dr. Body says and what I've read conflict a bit.  Yet he's usually right now I'm going with him.

I just want to understand.....

Well, THIS is fun

I saw my baffled doctor today. This is not the whooping cough; it's a whole new problem but he doesn't know what.  So I had a chest xray and a CT of my sinuses, got some new meds (another antibiotic and breathing med) and came home knowing this is getting to be the last resort before steroids.  I was actually typing an email to Dr. Brain warning her of this when I got 2 emails from my doctor.  Unfortunately the website where I have to go to read them is down.  Again.  I am so tired of it not working, which seems to be 25% of the time.  And once it is down it often takes quite a while to be back, meaning I may not know the test results until I have to call in tomorrow because there may not be an answer by the time I leave in the morning.  Nothing like an anxious wait to keep life exciting.  Since he didn't call I'm assuming I at least do not have pneumonia, but who knows and some answer would be really nice.

He was really nice.  I think he's picked up that I'm touchy lately because he made sure I knew the frustration on his face was feeling bad for me and not knowing how to fix it, not because I keep coming back with this bug.

So, I've seen the doctor AGAIN and I have no more idea what is wrong except for something with some lymph nodes that I didn't ask enough questions about to know.  I'm a little dazed today.

So please pray that the program works soon and that my answers are there.

Again

I haven't stopped coughing since Saturday and I'm wheezing again and now clearly have sinus infection except I have no idea where it draining.  Maybe it's not and that's why it feels like my head is going to explode.  So I just did a lot of things to make my life feel worse than it is; I stayed home, meaning I don't get my comp day Thursday meaning I don't get to go see my niece and may not see her until the 26th.  I have to so see Dr. Body this afternoon.  The best part is that I seem to have coughed hard enough to burst blood vessels in my eyes, so they are now both pink all the way around.  I was going to work despite feeling crappy until I saw my then red eyes and decided looking scary wouldn't win me friends.  Besides,clearly my current antibiotic is not helping here.

I talked to Dr. Brain finally.  She thinks I feel bad because I'm tired from being sick.  She also promised me that I am not running out of Seroquel doses, a source of great anxiety since I'm already on more than recommended and didn't know how high she'll go.  It sounds like she'll go as high as I can tolerate.

The thing is that I'm supposed to be resting, but when?  I have work.  Then things keep coming up for weekends.  Saturday is Dr. Brain.  Next week our Christmas party for work is on Thursday so that Saturday is Dr. Mind.  Then Christmas which I should have 2 days that week to rest and do nothing else.

I just want to be past this and move on.  Not happening today though.  I always think this time of year drags because it is stessful and constantly busy but this year is topping them all b/c it's the same as usual but I'm not.

Oh well.  I'm just going to complain if I keep writing.  I'm at that point that I think most people get  to when sick where nothing is right.  I'dlove to sleep, but I can't fall asleep.  I can't get comfortable to read. I'm hungry and nothing appeals.  Etc.

Back to my crazy existence in this bed.....

Sleepy

Between the narcotic cough syrup, my constant fatigue because that's part of whooping cough, depression, and now added tiredness from increasing my Seroquel dose and this is one sleepy lady.  I'm done sleeping for tonight which is fine, but I suspect that after my training is over today that I will be going home and going straight to bed.

In other news I talked to my supervisor about the person who has been slowly working toward helping me a few hours per week.  Getting her trained has taken months, and she still hasn't done an assisted eval from beginning to end (granted the patient was sent to the hospital but she also didn't seem to understand that she needs to plan that her first eval or two, with me, are going to be very long, like 3-4 hours of time to complete.  She needs to devote a full day to this, whether that means working on a Sunday with me or whatever, but I am getting so I'm going to need her.  My caseload is getting big and busy and I have several people who need quite a bit from me.  Going to her and saying that I really need this to happen is a big thing for me so I'm proud of it.

I may get to see my niece this week.  As long as Dr. Body says it's ok I'm off.  He told me one month which is up the 8th, but I have to make sure that it's totally safe with me coughing now still although rarely except since my forgetting I can't tip my head back.  Now I know not to make a dental appointment until I can breathe.......I forgot already how scary that sensation is.  I'm hoping to get in a breathing treatment or two tonight to help fix what I did, which I think was make the goop move around into a bad position and then it almost seals.

And that's about it from here.

Let's see...

Not a lot has happened lately.  I am just so tired.  I had a big mess with the pharmacy Thursday that showed exactly how tired and emotional I am.  I gave up on waiting for Dr. Brain so I upped my Seroquel to the last dose I have control to use on my own.  Last night I slept better and I think I'm getting sleepy now.

Physically I've been better, just very tired.  It doesn't take much wear me out.  The coughing is better but I do have a sinus infection and am on antibiotics for that.  In a lab part of my training today I had to lay flat with my head tipped back and had to stop the demo b/c I couldn't breathe.  I have coughed a zillion times since and had to take the narcotic cough syrup.  I have at least learned to stay calm, leave the room, walk around slowly and focus on slow breathing and when the anxiety reduces so does a bit of the feeling of being unable to breath.

Emotionally, depression is no fun   Obviously.

I think I am actually getting sleepy so I'm stopping abruptly...  I hope..........

Fast

I'm posting from email just to let you all know I'm ok but my netbook broke and I'm out of town so the only computer access is the public hotel one.  So I'll be back when I get home to my real computer. 

Pictures Pages

I'm in a crappy mood so here's some happy pictures from my vacation instead.

I know it's blurry but I love the action shot.  These 2 never came back after the first day for some reason.  All my wildlife was cardinals until I saw a raccoon the size of a house in the tree but he hid before I got a picture.

Crazily placed rocks are part of Appalachia because it was formed by glaciers.

Pretending to be artsy.....

I took a trail called "Upper Falls" excepting to see the top of the waterfalls.  Instead it was a beautiful lake.

tired

I'm getting more exhausted by the day.  It's the combination of work, not falling asleep early enough, not feeling great, and depression.  Not the best mix.  I'm not hearing back from Dr. Brain even though I have request in for more meds to help me sleep and feel better.  Getting frustrated with her; I've been emailing for 3 weeks now.

Dr. Body offered me an antibiotic for what he assumes was a secondary infection I shouldn't have been able to fight off last week but did, sort of.  I think though that part of my tired is that I didn't fully fight it off, I have a sinus infection, but how do you know when your throat has been red and sore for so long you can't remember otherwise, you always have thick gunk in your throat, and you haven't felt well in so long that you barely remember a month of time.  So I asked if I could try it on the basis that we know I always get sinus infections if things are clogged, I can't do the one natural treatment for that I usually do (sinus rinse bottle) because I wouldn't be able to breathe from the pertussis crud in my throat, and I'm willing to do anything to get over this.

I told him I fought off the fever and the rest just by prayer.  I was so afraid of trying to get an urgent care doctor (known no matter where I go for putting me down and not believing me because of my bipolar diagnosis) to believe that I even have had pertussis, much less that anything was wrong beyond that and that no, I couldn't take what they wanted to give me most of the time.  I could just see them deciding I was paranoid and making up rare illnesses.  Pink slip on a platter (that's involuntary committment for those who don't have to know these things).  I think  secondary infection is what is keeping me so wiped out.  It may even be keeping me awake as I still have trouble clearing all the crud.

I was going to post pictures but I just might be falling asleep so I'm going to see if  that's real.  Please God, 6 hours of sleep sounds amazing.

Ok

I'm ok.  Just very, very, very extremely tired.  Depression and recovering from 3 weeks of being so sick are not the best combination.  I'm trying to get Dr Brain to do something but she's still not answering.  I am surprised b/c Dr. Mind was going to update her and that usually gets a response.

On the other hand I think I'm getting over the coughing.  Slowly but surely; I haven't gasped for breath in a few days and I seem to be off breathing treatments.

I'm also spending all my blogging time trying to place one stupid order on Petco.com.  It FINALLY went through, but I'm not kidding when I say that it quite likely took 15 attempts.  It better be worth it and I better not get 15 sets of dog collars.

I did find out today that I get Thursday off this week and next because I have to work all weekend.  That helped, as I was really concerned about my ability to work 12 days in a row and then go see Dr. Brain on the 13th day.  I am barely handling a regular schedule as is; I'm just tired and no wonder since I've done very little for a month now.

I got pulled over tonight.  Apparently I cut a sheriff off when I pulled onto the road?  I truly don't think I did, maybe it was closer than it should have been but it looked to me like he was in the other lane when I pulled out. But I am so tired I'm not reliable.  I only got a warning, which was nice of him.  I got the insurance cost for my new car today and let's say insurance shopping begins this weekend for a VERY good reason:  this new policy is EXTREMELY expensive.

Anyway, I need to work on sleep.  I have to finish an eval when I get up.  So much for starting off right with the not doing work in the mornings thing.  But this one is complex and I need to be able to think clearly to say everything right.  Plus, it's really all Petco's fault.:)

Weird. Yet I'll take it

I am so puzzled.  Yesterday I was so incredibly sick.  The fevers and coughing finally calmed some and I slept around midnight.  I slept all day except for when my mother woke up up while excited about shopping and kept asking questions.  But even that didn't wake me.  I did try to call Dr. Body's office but they were closed.

However, things were better.  Tired, but without fever, less coughing than usual, no drippy nose or sinus pressure, and the wheezing even was having probably the best day in weeks.  So I had a 24 hour cold?  Which made me feel that bad?  Makes no sense.  If it had been stomach issues I'd call it stress from being sad about the holiday, but it wasn't that.  Just plain old weird.

The only thing  new today was diarrhea which came out of nowhere.  Because of my meds I get diarrhea about once a year or less, but today I got surprised by it.  My stomach feels fine and my guess is that it's related to so much drainage,but yuck.  That can go with whooping cough but usually during the most sick period, not now.

I'm still worn out and intended to go to sleep early, but this entire thing has been bizarre.  Yet pleasantly better than I'd thought.

Thankful, I guess

I spent today being miserable.  I feel like crap, I have had fevers most of the day which seem to be breaking again right now judging from the sweating, I am very pale, my heartrate is back up to 100, my nose is sore from being wiped, and I cried for hours.  Not getting to see my niece kills me.  She is just over 4 months now and I haven't seen her since she was 2 1/2 months.  Huge changes there.

So, my somewhat pathetic thankful list (this is for today.  I'm too sick to think about beyond today).

• -Because I know the material already and was given special permission to do training at home on the weekend I was able to get nearly 3 1/2 hours of work done.  Since this is a holiday I'll make a good bit of money from that and a good bit of the time I was actually listening with one ear and reading blogs with my eyes.  (Don't tell, although the suggestion that I might be ok to do other things while listening came from my boss jokingly).
• I have had a new showerhead for some time now.  I haven't had time to change it out.  However, with the breathing crap I've wanted to because it has a mist feature that may feel good.  So, working slowly and unsteadily I have a new showerhead to try out when I get enough energy here in a few minutes
• I have been so feverish and gross today that I've been dying for clean sheets and far to unable to move to change them.  Thanks to generally feeling disgusting and bothered by my messy house (I've been extremely sick for 3 solid weeks now, remember.....) I have managed to get down to only one sheet on the bed.  Again after resting that is coming off and clean ones are replacing it.  That and a shower might actually feel good.  
• I'm thankful for having the nebulizer.  If I didn't breathing would be incredibly hard today.
• I'm thankful that I'm apparently ahead of my time; when trying to find out why this stuff takes FOREVER to get through a treatment (45-60 min) I discovered that it has been shown to effectively treat bipolar and further trials are underway.  I know few bipolar people who could actually sit still and do this routinely (I find it absolute torture) but apparently it's widely available in pill form outside the US as a cold med I think.  I still don't know why it eats up hours of my life.
• I'm thankful I took the initiative to get the mask.  Since I'm clearly not done needing this and feel more gaggy with extra drainage the mask makes a huge difference in comfort level.  I think it slows it down even more though.
• I'm thankful that I can email my doctor and as long as he gets the email early he'll know that I'm very sick again and really need to see him.  The office is only open for a partial day on Fridays and with being closed today I'm going to assume it's going to be hard to get in to see him tomorrow, and that's going to mean trying to get a message to him that lets him know what is wrong well enough to treat it and make a decision about steroids, again.
• I'm thankful for a shower after a treatment.  This stuff is sticky.  The directions crack me up by telling you that if your face is sticky after a treatment to wipe it with a damp washcloth.
• I'm thankful for water.  I'm consumed an ocean of it today.
• I'm thankful for the internet that has kept me quiet and entertained today.
• I'm thankful for having done that load of whites which I wrote about a few days ago; I've been through a lot of handkerchiefs today and would have had to switch to tissues if I hadn't done that and been patient through three dryer cycles.

And now I'm getting sleepy, which is too bad since I'm an hour away from sleep, but at the same time is a huge blessing as I've been awake for 12 hours and not been sleepy at all because of discomfort/inability to breath.

I quit

I woke up this morning FREEZING.  Then I realized I did not feel well.  My whooping cough symtpoms come and go; today is a come day.  Seems like about every other day is bad.  But I also have what seems like a sinus infection.  So, tomorrow morning will be up early to call Dr. Body's office and either get more meds or go see him.  Again.  Because once a week is an appropriate frequency to see the doctor....At least I've been making the most of my COBRA coverage.  I had to purchase it for only 2 weeks coverage, but it's covered 1 visit to Dr. Brain, 2 (now maybe 3) to Dr. Body, a month of Seroquel (thousands of dollars), a month of patches (hundreds to a thousand dollars), a month of several other meds, a nebulizer, the meds for the nebulizer which I suspect are also expensive, 2 rounds of antibiotics (soon to be 3 and the 3rd will be a strong one) and 1 visit to Dr. Mind (sort of since it barely covers those).  So for once $362 seems reasonable for Cobra, especially since my deductible was fully met.

On the other hand I do not feel well, and that's making me more emotional.  I'm also more sensitive, making me have hurt feelings because my mother didn't notice I was crying when we just hung up.  I sound so crazy all the time now with the changes in my voice from the illness(es) and coughing that I'm sure she thought I was just starting to choke again, but still.  I hate this alone thing, even though if I ONLY had the sinus infection I probably would be grounded then too.  Of course I wouldn't have the sinus infection if I didn't have the other.........

I am so frustrated and tired.  I left my sewing machine at my mom's because I fully intended to be down there today using her washer/dryer and watching her puppies.  Now she has to curtail her time at my sister's to be back for the dogs and she's disappointed because she made me some dessert that I won't be eating today. My mother is not at her most supportive lately.  In fact she's driving me crazy but that's another post for another day.  For now I got my tears out and I should try to find something to eat for lunch.

Not participating

I imagine a lot of people want to read thankful blogs this week.  And while I am very thankful for many things and am very well aware of the miracles I've had happen in my life in the last year, I am also struggling.  Last weekend when I thought I was going to be hospitalized I felt a secret relief in that at least in the hospital I wouldn't feel so isolated.  But that didn't happen, THANKFULLY (see, I'm capable even though I'm not emphasizing it this year) and quarantined. So tomorrow I'm trying to keep as normal as I can for a day off.  I'm not sure how else to cope.

I'm very excited right now as I got home and decided I just had to try out knocking down the walls of that basement room.  OK, can we say FUN!  I wore a particulate aspirator and goggles so I look like a huge bug (I may take a picture) and so my lungs were protected and about 1/4 of that wall (plasterboard at least) is gone.  Soooooooooo stress relieving.  Dr. Mind will be happy I didn't find this one until now; I think when he first knew me he was convinced I would one day rip apart my entire house including things like walls when I was manic.  Not manic now, just dying ot know what I took on.  I can do this.  I have to read how to take down non-weighbearing studs, but it can't be too hard.

Anyway, I had a long day.  Because I'm a new employee for a job I've been doing 6 months I'm having to do new employee training that can include things I've been doing 6 months.  I spent an awful hour this afternoon "learning" how to operate the computer program that I have used every day since June 1.  One of the test questions included pictures of several buttons, including one that said "edit patient" and asked which button you'd click to edit a pt's profile.  It also taught you how to scroll up and down and how to click to fill in radio buttons.  It was the longest hour of my entire life, or so it seemed.  And there's a million more of them to do......

I have to set up my breathing treatment before I fall asleep.  That's the real reason I started beating on walls; I needed to wake up a bit.

More tomorrow I'm sure...

Random assortment of stuff

Tonight I may have carried the strangest set of things into my house ever to enter these doors at the same time.  My list:

1)  Overloaded clipboard with stuff I should look at tonight but won't because I'm tired.
2)  Oxygen mask to replace the tube thing on my nebulizer that I was supposed to hold in my mouth; it gagged me.  For anyone's reference in the future you can get an oxygen mask at a medical supply store without a script for $3.75.  I wish I'd done that earlier in the week; I'm doing my treatment now and handling it much, much better.  I also have issues with having my mouth and nose covered so I've had more fun but this is better.  Plus when I cough I don't lose meds because I'm holding the gaggy thing away from my mouth.

•        2a)  Funny, well, more like ironic.  Dr. Mind and I were talking Saturday about how to get me comfortable         enough to sleep.He suggested a recliner; I explained I don't have one, only couches because I hate them although I was considering buying one if I got desperate enough.  He looked puzzled ( (who has strong opinions against lazy-boys?) but we moved on; I wasn't in the right place to explain the role of a recliner in the early childhood abuse.  Two seconds later we were talking about how I have to keep my mouth and nose covered while outside until my lungs heal, and while this was given as a warning not a directive the fact is that cold air can make me choke like nothing else does.  The problem is that I also HATE having my face covered.  Dr. Mind said something mildly about that probably being from someone holding my mouth to keep me from yelling.  It is, but what he didn't know is that some of the memories that make that the worst are from being held down in a recliner.

3)  A burrito from Sheetz.  For those who don't have Sheetz it is a gas station chain that has a kind of short order kitchen that has relatively decent food.  I'd never had their burrito but it sounded good tonight.  I got 2 meals from it and it was good.

4)  A 3 lb. hammer thing for taking down walls.  Wimpy walls, not sledgehammer territory.  

5)  A respirator for use with construction projects to prevent inhaling crap into my lungs that would then have to sit and rot until I can cough it up which I'm beginning to think is never.

6)  Paperwork for my new washer and dryer.  Have I ever explained my theory about houses and cars?  They talk. I bought the house and my 35000 mile Focus fell apart (piece of crap car).  I bought a car, my dryer died.  But there was a really good sale at Sears on a front loader that met several criteria I had in mind for new washer/dryer when the time came (which I just didn't expect to be yet, but maybe it wasn't a good idea to wash a 22lb blanket repeatedly in a standard weight only machine) so now I have to knock down two walls in my basement (hence 3 and 4 since I can't brethe in dust but these are wimpy walls) because the ahem, very nice and thoughtful people who built this house added a bedroom down in the basement by sticking up some plasterboard.  The problem is that this traps the washer and dryer in the laundry area;when I moved in I had to pay a plumber to move the hot water tank so they could be installed.  This time I am not doing that; I have realized how obnoxious that bedroom is because it blocks light, messes up the logical shape of the basement and it is disgusting and I'll never use it as anything anyway.  So this weekend the walls come down and the DISGUSTING carpet  comes up.

7)  Paperwork for my new Sears card which gives me one year with no interest.  I'm fascinated by this.  My credit was so poor 2 years ago that Sears cancelled my card while it still had a balance because I was so bad at paying it.  And now my credit is good enough to get a new credit card AND a new car with a good interest rate.  I've worked my butt off fixing my credit, so this is certainly something I've earned, but it's hard to get used to it. (My credit score is about 150 points high than it's lowest point; I REALLY was in bad shape for a while.)

8)  As always, the dreaded scarf so I can make myself believe I'm suffocating again tomorrow.  Yay.

(And by the way, I'm totally freaked out about buying a car and a washer and dryer in the same few weeks.  I haven't made big purchases in so long (well, except my furnace and windows but I had saved and paid those off immediately).

Also, I find it funny that Sears offers 2 choices:  Free delivery, saving you $69, or 0% APR for one year, so for a $1000 purchase at the 26% interest,it's $69 versus over $250.  Hmm, what should I choose....Now I have to make it through 3 weeks either drying my clothes 3-4 times per load or dragging laundry to my mom's.  Which should be fun since I have very little free time in the next few weeks; I have an all weekend training next weekend and the following is Dr. Brain and after that I'll have my own machines again.

Ok, I've been writing for 30 minutes and this nebulizer is STILL running.  Tomorrow I'm going to start cutting the dose a little. This med is hard to find so that means unavailable around here and I won't be back to the city to get more until next week.  I think I can get by with less per treatment and make the possibility of treatments last longer.  I could be wrong, but I'm going to try.  I wonder how much longer this is going to run....Or how long before I give up on the last of it.  Often when I see less medicine coming out I decide it's been long enough, another reason that I am going to try to cut the dosage.  I don't have 45 minutes in the morning to do this.

Who can guess?

OK, so in the last few weeks I've managed to get whooping cough, spend 2 weeks horribly sick, get so sleep deprived I nearly wound up hospitalized, had my dryer stop working properly, and now......well, you guess.  The clue is that it is from my vacation and I never once sat down outside naked.

Otherwise, today actually went well.  I got a decent amount of sleep, got up on time (even more important now because the nebulizer thing takes FOREVER.  I am so thankful he put me on the lower of 2 doses of the higher concentrated of 2 solutions.  It's like an hour and half investment by the time I prepare it, do it, and cough stuff up until more is loosened.

Dr. Body and I had a good email conversation.  He admitted to not looking the inhaler up and that while he thought the interaction potential wasn't extremely high that caution is best with me and so it wasn't a good idea.  (I'm realizing how much worse the inhaler made me Saturday because it agitated me, which was the last thing I needed).  He said he wasn't insulted  at all by my decision to stop.  He told me that I'm right and that steroids would be most effective but at that point Dr. Brain would have to take over.  In turn I told him that I've never explained my fear of steroids and that he needs to not be afraid to tell me it's time for them even though it does mean hospitalization. When I was 24 I flew from grad school in Michigan back to where I did undergrad in PA for a wedding and the day after I arrived I broke out in hives over both legs.  My insurance found a dr. for me and I was started on prednisone, a fast taper.  I don't think that would have been so bad but on the way home I started feeling sick.  Since it was an extremely turbulent flight in a small plane I thought it was from that, until I starting expelling a week's worth of food.  I didn't know that when  on prednisone that means "GO TO DOCTOR" and so when I woke up the next day with hives from my toes to my scalp I was rather freaked out.  I then had to go through a high dose steroid taper and it messed horribly with my mood.  I screamed at a classmate in front of the rest of the class and the "teacher" (didn't deserve the title); I wrote a paper on the ADA and sobbed my way through it; my moods were out of control.  Now we know why and that I was having a mixed episode, but at the time it was just scary.  And from then on I don't think I have been 100% asymptomatic again.  It was another year before bipolar really affected my daily life, but those steroids changed things forever.

I fell asleep right there and have no idea where my thoughts continue.  So I guess I'll just post.