Answer

B wrote:

Good Morning, Jen,

I respectfully disagree with your thought about never returning to work. I am sure you will. I am not sure when, but your working life is far from over. Clearly, I have no crystal ball. Nor am I a physician. Although it SEEMS like you'll never get a handle on this, I believe you 100% will. 

You know, when I read of what's happening and remember all that has happened within the last year it sometimes seems obvious to me. Again, I am no doctor - just an observer. Here's what I see...

Within the last year your body has gone through bronchitis, asthma, uterine problems, no sleep for weeks on end, appetite changes, lots of pain and then surgery. And those are just the PHYSICAL THINGS that have happened. Along with all of this comes new medicines, changing old medicines, inhalers, patches, surgical anesthesia… again, purely PHYSICAL things your body has endured.

If you look at it this way, is it no wonder your mental health has also suffered? Jen, even if you didn’t have bi-polar, do you think you’d be a-ok now? I don’t think ANYONE would be ok. Seriously! I know I wouldn’t, and that is fact. Because, these physical changes take a HUGE emotional toll – HUGE, HUGE, and HUGER.

\And now let’s consider these additional meds, physical symptoms, lack of sleep, huge anxiety etc etc etc have totally MESSED with your bi-polar meds/situation. Dear Jen – I think your body and mind just can’t keep up with it all! If I were your patient and told you the same history, do you honestly think I’d be all fine and dandy? No way. Sweet Jen – NO ONE WOULD!!!

Oh my gosh yes, this is an easy explanation from me – the one who doesn’t have to live through it and suffer through it. But can you take a step back and pretend it is someone else we are talking about? I am curious what you would say if it were me. Or Michal. Or a patient. 

I think you’d say, “yes of course you will be better” and “yes, of course you will work again after your body and mind have regulated themselves. You’ve been through the wringer and it takes time to sort it all out.” And then you’d pray for us. Just like we pray for you. -- am I close?What else would you tell us?

B, you are right.  I am still unsure about work; I'll work somewhere, somehow, but I am becoming less confident in my ability to go back to working full-time with nearly 3 hours of commuting.  Since I love my job and can't stand the idea of leaving because of my health I just feel like this is taking the career I worked for from me.  I work in a special place.  There's plenty of home health jobs and I'll find one if I need to.  But it won't be like what I love now.   But my body has been through hell and back and my brain suffers collateral damage along with having had its' own hits.  I know this.  I am just tired of saying "I'll be better when ___".  First it was the first month of whooping cough.  Then it was the 3 months it can last, although asthma was clear before that time.  Then it was the cold air.  Then it was after a pulmonologist will treat me.  (Which did make a difference).  Then it was after my surgery.  Then it was after the akasthesia.  Then it was after the Neurontin left.  Then it was when the depression caused by all that was over.  And when that point finally came I thought "Thank God, there are no more excuses".  And thus began the toxicity.  I no longer hear these words as the sound reasoning I know they are.  Instead I hear excuse after excuse.  I think of someone who doesn't seem me routinely or who has not known me except for the last 13 months and I can't imagine this seeming believable.  From that perspective how can it seem like anything but someone either exagerrating, making things up, or trying to get out of things?  I have trouble with knowing if I saw a patient's diagnosis list and it read like mine I'd tend to be almost as unwilling to just accept it as the pain management doctor who treated me last week only because he theoretically is a pyschiatrist, although he hasn't done that since I was 3.  

This all brings back memories that are hard to handle.  For years I juggled issues like this one after another and work and it was so hard.  I was constantly going through med changes, I fought to work every minute I did work, I really couldn't keep up, and I didn't do anything fun or do much ever besides see Dr. Brain montly and my mom sometimes.  So all of this stuff in the last months has just made me relive that and as I accept I'm not going to be well this week I fear what happens next.  The last 2 years are the only time I've ever had much control over how I felt, what I did for fun, how I slept, where I went (couldn't stand stores at all for a long time and was doing ok until this, etc.)  Now all that is stuff I don't have.  I know it may come back, probably will come back.  Dr. Brain told me today that it is more likely that I thought she originally was implying.  But I don't have any experience with something like this happening and then not losing something.  I have never been in this kind of position and had things work out, except for when the right meds finally decided to work.

And I am angry.  I want things to have a simple solution.  Those don't really exist for me it seems.  I think I had come to believe that I'd paid my dues, a feeling I've had before, and then it turns out that everything is out to get me again.  Dr. Body has told me he's fine with giving me work excuses for things that might not cause other people to miss work, because I do have several serious conditions.  He reminds me of that often because otherwise I convince myself that all of it is nothing.  But that also just makes me feel hopeless somehow.  Last week in the hospital when I came into the room and with each of 90000 trips to the bathroom I would look at my roommate and think she was at least 75.  She was 49.  Due to diabetes and I don't know what all she was in a similar condition to someone much, much older than herself: blind, double amputations, dementia, burns on her hands from smoking that she couldn't feel, a crazy infection, and that's just what I overheard.  I don't want to be that person.

I don't want to be the person I had to be last week.  ERs tend to be awful when bipolar; I've had more venom and prejudice aimed at me in ERs than about anywhere else and I've only been to an ER a few times.  This was pleasantly different.  Because of hallucinating I was immediately triaged and immediately placed in a room that is clearly for psych patients it was a safe room.  Odd feeling but much quieter than the rest of the ER so I didn't care.  I saw the best psych resident I ever have encountered, someone who had talked to Dr. Brain, read the extensive set of emails, records, etc. she'd sent him, and knew about me when he walked in. He was straightforward, kind, and knowledgeable.  He told me if my labs were bad I'd go to medical and if not I'd be transported to the psych hospital for a while.  He clearly, like Dr. Brain, anticipated bad labs.  The ER resident was also kind and then his supervisor came in and went through a full lithium toxicity exam so the resident could see what was missed.  He also apparently was supposed to come up with what he missed doing as suddenly he said loudly "FLUIDS!" and ran out.  I was in a bed upstiars about 6 hours after arrival.

The next 2 days were horrible.  I spent them drinking gallons of fluid, peeing, and asking over and over for my basic meds.  The above mentioned psychiatrist refused to listen to my "if I don't have my antipsychotic I can't really tell you how I feel because my mood is too mixed up with exhaustion" and instead told me missing a night of sleep never hurt anyone.  Except for someone who is bipolar and has missed 2 nights and not slept a ton otherwise in days.  He was sarcastic, telling me my level wasn't THAT high.  Well, it wasn't THAT high if it was the typical 12 hour level but a 24 hour level should be way, way lower.  My level also is maintained at the usual bottom cut-off and so that is much, much higher than if I had a more typical level.  (For reference sake we keep my level at or below half what it was kept at before toxicty #1).  

Most of my meds were either given incorrectly or not at all.  I was not ordered any anxiety meds or even tylenol.  I spent every time I saw a nurse asking "where is this med?  why is nobody giving me meds?  why am I not being treated for my baseline condition?"  The treatment for toxicity is fluids.  Normal saline is not about to treat anxiety, cycling, sleep issues or hallucinations (well, sort of; less lithium and that stopped).  But messing with antipsychotics in someone who is hallucinating is simply stupid.

I fought right up until 2 AM last Saturday night.  No, I was still fighting with morning meds at 9 AM.  I doubt anyone has ever been discharged as fast.  I was inches from pulling my own IV to speed it up.  They barely even gave me directions to leave the building.  I told them at 2 AM that Saturday night that I would leave AMA (against medical advice) if I hadn't just taken Seroquel.

I kept being told I should be in the psych unit.  Except that I wasn't have psych issues (or wouldn't have been had my meds been given properly) and therefore wasn't even a candidate for a psych floor.  Plus I don't think psych floors really like IV poles and people attached to them.  Too many safety hazards.  They didn't have a clue how to manage my condition and therefore I suffered fairly extensively.  The doctor even admitted to not knowing enough about psych meds, yet he never called in the psych resident, presumably because of ego issues.  I had a panic attack and after the dr. was paged 4 times he let me have 1/2 of a dose I take to calm  when I'm anxious, which is nothing compared to panic attack needs.  I cried.  I yelled.  At the doctor.  I'm writing a complaint.  Because so much of what happened was wrong.  Had they felt uncomfortable with insulin and withheld it they would have been in huge trouble.  They don't say all diabetes must be treated on endocrinology even if they have a broken hip.  Cleveland Clinic is highly ranked as a psych hospital and they have nurses and doctors who have no clue about psych issues, nor were they all that anxious to learn.

The end result of that hospitalization besides turning me into a wreck is that I am less comfortable with myself.  I feel like something is WRONG with ME that caused this all to happen.  I know that's not true. I know my complaint is a serious one. But the end result is I left feeling like I don't deserve equal treatment and now that equal treatment is not fixing things I also feel like treating me is pointless.  Again, I know that all this isn't true.  I just am struggling with having what I've been fighting for hte last 4 months, the idea that I don't get an equal chance because I'll keep getting sick anyway, confirmed.  And the only reason I felt like that up until this stay was that it was what my own mind was telling me.

And that, long story aside, is why I'm having trouble feeling there is hope.  I spent 3 days being told I wasn't worth having hope, wasn't worth treating with even maintenance medication. I'm vulnerable, I don't feel well, I'm not eating enough and the result of that combination is that I feel worthless and that medical resources are wasted on me.  I truly felt like that by the time I realized they didn't even properly complete putting medication in my IV so it didn't clot.  She forgot. I spent hours with an uncomfortable, useless IV because I had to have it in case of emergency, but it wouldn't have worked because it was clotted.

To make this even worse I got my level drawn today by someone who acted something like I drug her out of bed for this blood draw.  She never even told me she was going to stick me; I watch so I knew, but if I didn't I would have been mad.  She also didn't get much blood and rather than do any of a number of things to get more she mumbled it would have to do.  It better be enough.  That was my last not punctured, visible vein.

This is so long.  I'm sorry.  This is what I've been holding inside all week trying to get out in an organized manner.  That didn't happen, but it's out now.  Thank you if you managed to read all this without taking a vacation day (and more so if you did!).