I've been all nervous about my year end review at work that was supposed to be tomorrow morning.  So at 5PM, I get an email about a conflict with my meeting time.  Of course, this email comes out just late enough so that I can't find a secretary to work on rescheduling.  So now I don't even know when it will be!

Then, it's off to the pharmacy to pick up a Rx.  I re-filled online, and was really happy with how easy it was.  I know it's silly, but I hate calling things in.  The more I can do online, the better!  So, I get to the counter, and the refill is not there.  It turns out my insurance won't cover the refill for another week or something, even though I run out of pills tomorrow.  

So I kinda make a stink, because I really think I should have been called or emailed about this!  I submitted the refill this morning.  Had I known there was a problem, I could have called my doctor's office.  But no, they wait 'til I show up, making me feel like an idiot, and making it too late to call my dr.

My Rx is not for anything habit forming or anything, it is just expensive.  I was actually thinking of switching back to neurontin anyway, since the lyrica seems to just cost more and not work that much better for me.  So no worries about me running out of meds, I have plenty of neurontin left over and it is safe to switch (I asked before).  

It is just the principle that I should have been informed about the problem once they knew about it, both for my review at work and for my Rx.  So I'm all miffed now!

Luckily, this is my favorite time of day.  I get home and listen to music and prepare dinner.  So I'll get over it.  I just feel stressed out about work and not feeling well, and was in no mood for such nonsense from people who are too lazy to have any consideration.  

Now for more important matters, like what to put in the salad?

I am so glad that ppl have stopped by to wish me well.  I decided it was best not to weigh myself this week.  I can tell when the scale will motivate me and when it will just frustrate me, and I know it would do the later this past week!

I haven't eaten anything awful, but I had a couple of days where I was almost glued to my couch and sleeping a lot.  I've had non-weight related health issues, and I was both physically and emotionally overwhelmed.

I think this past week, my life got in the way and I lost focus on eating well and staying active.  My portions got bigger and my workouts shorter.  But I am hopeful that this week I will regain a better balance.

We all hit snags, it's how we get untangled that matters!

Again, I really appreciate all the supportive remarks, hopefully I will be worthy of them through continued success after this brief detour.


Wonko's Weight

I feel like I am caught in a revolving door that keeps taking me back to the doctor's office.  I've been to many appointments with several specialists.  I really don't want to keep going right now.  I feel that I need to allow more time to see if/how my condition changes.

But I am in many ways running out of time.  My undiagnosed condition interferes with my work, but I am not in a permanent job and am facing a difficult situation in terms of how to proceed.  Having a better grasp on my health could be crucial to planning my career.  Also, while I really would like to ignore it, I am in a lot of discomfort.  I try not to dwell on that, because I hate to feel like such a whiner.  But my recent experience of going back to "normal" while on steroids, then rather suddenly dropping back, has highlighted to me just how not right I feel daily.  Neurontin takes the edge off, but I don't feel I have an adequate level of symptom control to function normally.

So between my job situation and level of comfort, I need to push this thing.  My significant other, my parents, and others close to me all agree and think I am nuts show any hesitance.  But I AM hesitant!  It's been over a year since I noticed the small beginnings of my problem, and I've been shuffling between doctors and tests since January 2008.  While my doctors seem concerned, they also seemed stumped.

So I'm planning on going beyond private practice doctors to a university setting.  This feels like such a big step.  I remember last spring the idea first came up amongst my loved ones, and I said "well maybe if it comes to that" but I never really thought it would.

I feel like taking this step is putting a lot of stress on me.  I feel like if I go, and they can't help me, then it will be my fault.  Which begs an important question:  When did it become my fault that my doctors can't diagnose me?  Why do I even think this way?  If I took my car to the shop for a mysterious clunk and they couldn't fix it, would I be embarrassed or in any way to blame?  

I know that my situation is an emotional burden, but I also know that I am not simply depressed or in some other way suffering emotionally leading to manifestation of my medical problems.  I've re-hauled my lifestyle.  I've dragged myself to work through all kinds of symtpoms and discomfort.  Since this began, I've attended and presented at several nat'l. conferences and had other significant career accomplishments.  I have a great homelife, and I've hardly cried at all through this.  People who know me both professionally and personally have all expressed amazement at how I am handling the situation.  As I've stated before, I like myself, A LOT.

But put me in a doctor's office and all of the sudden I feel like I should apologize for not being an obvious case, and I accept answers that I know sound like nonsense.  I don't know a thing about medical science.  But I am a researcher in a physics lab.  In my line of work, I need to collect data, look for trends, and then explain those trends.  If I can't quickly explain my data, I can't go and present to colleagues that I've decided to tell my data to "wait and see."  Nor can I make up vague explanations.  Well you get the idea.  I don't settle for that laziness in my work, so why do I accept it from my doctors?    

So, I seem to have several rocks and hard places.  I don't want to go to a university department yet, I want to give it more time beacuse I am skeptical that anyone can figure this out for me yet.  But, I am up against the wall and need more symptom relief and/or some resolution/prognosis going into my job search.  I don't think any other doctor will be able to  give me a more clear picture of what is wrong, but I also feel like my doctors are just hopelessly stuck.  Darned if I do, darned if I don't!


  

I can not distinguish if it is all/partially an after effect of prednisone, and/or all/partially due to the return of my symtpoms after almost a week of almost 100% normalcy, but my emotions are swinging and I can not concentrate.

Yes, the return of my symptoms was kind of devastating, and I think I realize that more now than I did when it happened a week ago.  I have been told (by doctors) that this can stop, go away completely, and never come back or progress.  Both my neuro and physician.  Why would I not then get my hopes up and expect to be cured by the steroids?  Even my inner skeptic was pretty much silenced when I felt so great.  This is the 2nd time that I've had a brief, medication provided reprieve, and maybe the insult to injury is making this one sting more.

But like I said, I was not really sad at first.  If anything, I've had more good mood swings than sad ones in the past week.  I was kind of laughing it off.  I've been a bit up and down in terms of the intensity and number of symptoms I have day to day, so I was thinking that as long as I level out better than I was before, I've lucked out.  And the "up" days in the mean time are precious.  

I think I've even been manic since stopping the pred.  Like yesterday, I could hardly sit still (despite some discomfort from symptoms) and felt ruckus.  

This is long, but what I think is a funny example:  Last night I went to the mall and was at a store that had a single line that went to several checkouts, but the store was dead and only 1 cashier was open, so there was no need for this fancy queue.  I got in it anyway, but there was already 1 guy in line just at the cashier.  He had been there way before me, but when it was his turn, I heard him apologize to the cashier for not using the "main line."  It was loud enough for me to hear, and this inspired my inner thesbian.  I put on my best Valley Girl accent, including putting my hands on my hips, tapping my foot, and a loud "huff" before I spoke "Oh mah gawd!  That is SOOOOoooo unfair!"  With big eye rolls and more scoffing.  The BEST PART is that they bought it!  I committed to my role and continued to sigh and tap my foot for a few more seconds before bursting out laughing.  The cashier and other customer were relieved, and joined in the laughter.

While I found this to be hilarious, my shopping buddy was kinda shocked, I guess I had been exhibiting similar extravagent behavior all evening and this Wonko Production just was too much.  So that made me feel really bad, and also worried me that my emotions might be slightly out of control.  I keep to myself at work and go days at a time without talking to anyone, so that is ok, but I better be careful when I'm out.

Then today, I am sitting here, still not concentrating well, but now I feel sad.  I had a lot of deadlines and work obligations in August, but now that they've passed, along with all of the steroid and symptom stuff, I am thinking more about why I don't feel well, and I know that is pointless because all of the anxiety won't help my doctors figure out what it wrong, I am just torturing myself.  

I am sure a lot of people struggle with the issue of when to say WHEN.  I certainly do.  I would love to just accept that whatever is causing the tingling and laundry list of werid-o symptoms is what it is, and just live through it.  I've head the agrument "well, what did people do X years ago before X test and X medicine were around?"  But, I'm not sure that works for me.  I'm not a cavewoman or even a frontierswoman.  I'm me, and I live now.  And I'm sad.

I'm sad that I just last week told family and friends that I'm fine, but now I feel unwell again, and will probably need to confide in them about this soon.  I'm sad to put my family and closest friends through it, and I am sad that some other friends probably think I am a nut by now and don't want to hear it.  I'm sad that I don't feel like I can fulfill my work obligations.  I'm an approval seaker and well aware of it, so I am sad in general about letting people down.  I'm sad that I don't feel like I can look for my dream job in my current job search, because of my health.  I'm sad that I'm worrying about the long-term, which is always tough but ever more confused by my poorly understood health.  I am sad that I may need to compromise my career goals.  I'm not a woe is me sort, I swear, and better me than someone else, but I am nonetheless sad.

Don't get me wrong, I like myself, a lot, and must say that I think I am pretty awesome.  When I look back in my life, I see that I have overcome a lot and reached high goals that I set for myself.  Even my parents, an arguably tough crowd, are proud.  But how can I overcome this when I don't even know what the heck it is?  And if it is not something I can overcome, replace "overcome" with "accept." I mean, I don't even know if this problem is big enough such that there is anything I even need to accept!  What if tomorrow it just stops and disappears forever?

So now, I am confused because I am sad about a problem that may not even be real.   And if it is real, then I am confused as to why sometimes I feel so happy.  I am also confused because my symptom level seems a bit different everyday.  My vision problems were the first thing to return, and have been constant for several days now, but the other symptoms are sort of coming in and out in a way I am not used to.  I'm confused about it, maybe this is a normal post-steroid bounce?  

Between my body and mind, I've got a gamble opportunity, just like Vegas!  Am I heading up (symptom wise, emotionally?) or down (symptoms, emotions).  I think there are 4 possible outcomes:  
up(symptoms) and up(emotions),
up down,
down up,
down down.

OK, so I am better than Vegas.  In 3 out of 4 outcomes, I have at least 1 up, either emotionally or symptomatically.  But the downside is that I have an equal chance of getting (up up) or (down down).  So it's pretty much a coin toss.  

I'm worried that I am getting into the mindset that this really should all be a solvable problem with a definite end, when in fact, I think Vegas would stack the odds in favor that I may never really know what is going on.

I know the real answer is time.  If it's nothing, IT WILL RESOLVE.  If it is a dreaded something, it will eventually become obvious and show itself further.  I need to keep this in mind.  A lot of it is out of my hands.  What is in my hands is how I accept this challenge in life.  I hope to keep my emotions in check and to continue my healthy lifestyle adaptations.  

Wow, now I am feeling pretty level-headed and failry pleased with myself for how I am dealing with things!  I'd better stop while I'm on top!