This week's health update theme is the "good and the bad"...

Well, here it is in all it's glory, and then I promise you I'll get to some fun posts in a bit.  Before I start, I just want to say again a HUGE thank you to all of the continued support, encouragement and ongoing outpouring of love that we continue to receive.  This has been so tough and Rob and I couldn't do this alone - it means so much to know we have a good "team" around us.  I appreciate all the texts, cards, calls and in-person support, I feel so incredibly blessed and it really makes a difference, THANK YOU.  I love knowing that so many of you are reading this blog stealth-like (although feel free to comment!) and sending us your prayers and thoughts, it means a lot.

So, since we last talked, I had my follow up with the Rheumatologist and good news/bad news.  Turns out I probably do have an autoimmune disease (they said it's "probable" pending a back MRI for confirmation) called Spondyloarthritis.  It's not curable, but it's treatable with medications and does explain why I've had chronic back pain since adolescence, so it's nice that I'll finally get some relief from that.  The bad news is it is absolutely unrelated to my vertigo, so there's that.  It's like we went digging for gold and found, well, ping pong balls.  Yay, ping pong balls!  Here's a link for more info if you want it, I'm just learning more about it myself.  http://www.spondylitis.org/main.aspx
They're thinking I probably have the Ankylosing spondylitis type (which explains my back pain, plantar fascitis and knee pain), though since it's not fully diagnosed, we're calling it the "Undifferentiated type" and we're just trying an NSAID (anti-inflammatory) until we get full confirmation.  Then we'll try a fancy-pants actual medication like a Sulfa med to see how that works.

Around the same time I had the inner-ear steroid injections and intensive 3 times a week spinny chair treatment for several weeks in a row.  The good news is that is seems to have finally helped (yay!) in that my eye movements are FINALLY quieting down to almost nill - they're really insignificant and tiny at this point.  The bad news is that I feel absolutely no difference in symptoms so that proves to the Otoneurologist that in fact, I do have permanent nerve damage (called Neuritis) from the original Viral Insult (as they call it) as they suspected.  Of course I was so super disappointed when they were all celebrating in the spinny chair room pointing out that my eye movements were better when in fact, I actually felt no difference that day, in fact I felt awful.  It is a crushing feeling to realize that I have permanent nerve damage, but I didn't wallow too long...because the GOOD news is (do you see a theme here?) is that we can work on that with Vestibular Rehab.

So...I've been referred to neurological physical therapy finally and I started yesterday.  I absolutely love my physical therapist, she's super positive and has great expertise - she reassures me that this is very common and over time (she says months to years, but we're going to ignore the last part) we can override the brain's nerve impulses being sent to the body saying "we're off balance, we're unsafe, we're spinning" when in fact my body is actually healing and walking in a fairly straight line and doing much better.  So, she's going to give me all sorts of exercises to try every day to retrain my brain that I can turn my head quickly without getting disoriented, I can take in all the information and integrate it quickly, etc.  Hopefully that can be extrapolated to real-life of driving and working fairly quickly, and I think the hardest part will be I will just have to be patient.  Of course I'm going to give 150% to my exercises because finally it's something I CAN do, but my PT explains each person is different and it just depends on the brain's ability to heal.  Similar to a stroke victim who has to relearn how to speak, etc, every person is different in their pacing.  But she was so encouraging that I've already made great progress (not knowing) by working out daily, cooking, walking and not being immobile because that was forcing my brain to work and relearn on its own.  Hurrah!  I knew that cooking would be a good thing, haha!

So, last but not least is the really hard part and I apologize for those of you I haven't told in person - this just happened last week.  As most of you know, if I'm not better enough to drive/work by 6/10, I will lose my job.  And that's really hard news to swallow and I'd rather not dwell on that here or talk about that much, but the good news is my bosses have been amazing and reassured me they will rehire me in a heartbeat whenever I'm better, so that is incredible.  But the hardest part is this: 6 months ago, Kaiser sent me an application for long term disability, which I didn't even know that I received.  I applied for it (which was an extremely lengthy process - took days on my own, then literally months for all the medical information to get accumulated) and eventually I was approved.  I was so relieved knowing I had a safety net until I was better, I could work on healing and then I would return to my job.  Well, then last week I received a call from Kaiser HR and she informed me that a mistake had been made and they should have never sent me the application - I'm not eligible for the disability because of the benefits plan I was on, so starting in June, I will receive no future payments.  So June 10th, I'll be out of a job and out of money.  Needless to say, we're both just absolutely panicked.  Now we're in the process of having to rethink everything.  I'm not able to work and yet, I have to.  So I'm going to try to think of things that I can do to bring in some income but don't require driving - and that's a daunting task - my brain is just spinning and it's so hard to stay focused, I'm just so sad and upset about the rug being pulled out from under us.  I'm trying not to feel sorry for myself but I'm not going to lie, I've had a lot of tears.  Anyway, I know we'll eventually be ok but in the meantime we're just trying to regroup.  We sure could use everyone's prayers and thoughts right now - specifically in the "peace" and maybe in the "winning the lottery" category.  :)

Again, onward and upward, and as promised, happier blog posts to come.  Not just for you, but for me.  We had a great trip to Colorado and such a great birthday party, so we'll post about both of those for fun, my sweet loyal readers - hang in there.

And, because I always have promised I end each health update "wah wah" on a funny note, here's a video that's made me laugh this week, and man have I needed it.
You worry about yourself!