The Mystery Illness Diaries: Journey to the Magical Land of Updates

Sometimes I fall into the habit of deciding not to update until 'this' batch of tests comes back, or until I hear from 'that' doctor concerning the 'thing' we were just talking about.  As a result, I find myself with a series of vignettes I probably should have put into words a few weeks ago.  I'm not even sure where to start, so I'll just... start.

Turns Out, I'm Not Pregnant

Of course this was never even a worry.  But for the love of god, there have been times when I felt like my daily list of irritations could have been lifted right out of a pregnancy blog:  My feet are numb!  I can't wear shoes!  My back hurts!  It's hard to get on and off the toilet!  I can't bend over!  I'm always tired!  I keep crying while watching episodes of The Voice! I'd sob while eating ice cream and listening to the background stories of the hopeful songsters auditioning to be on Team Adam or Team Cee Lo.  I related to them in stupid ways. Katrina Parker lost her voice for two years because she came down with a mysterious illness.  I also have a mysterious illness, so I relate to her!  Erin Willett really loves her dad and he just died of cancer.  I also really love my dad so I relate to her!  Tony Lucca is the only person from his generation of The Mickey Mouse Club who didn't get famous, and he had to spend the last ten years watching Britney Spears, Christina Aguilera, and Justin Timberlake get super famous while he sat around getting not-famous.  I also spent the last ten years watching Britney, Christina, and Justin get famous while I did not get famous. I can relate to him!!!!  It was one of my more pathetic departures from rational thinking.

Thankfully, I am happy to report that my faux pregnancy days seem to be over.  Yesterday, for the first time since this all started, I was able to wear close-toed shoes.  This is actually sort of a big deal.  My feet were so numb and swollen for so long that wearing anything other than my Chacos was kind of unbearable.  I almost don't want to say this out loud (because I don't want to jinx it) but the numbness has completely left my hands and my feet are about 85% not-numb.  This has helped me to regain a lot of my lost balance and has also contributed to me slowly re-learning to walk properly.  You know that feeling when you've sat in a weird position for too long and your foot gets all numb and you have to shake the hell out of it for a few minutes before you get relief?  Yeah, that's how my hands and feet felt for about a month and a half, only shaking them didn't help.  Needless to say, it's been a huge relief to have that doctor-stumping symptom make a marked improvement.

With the help of regular Physical Therapy sessions, I've also been regaining some of the strength in my legs.  It's weird how this Mystery Illness attacked my bigger leg muscles (thighs, quads, hammies, etc.) but not my calves or ankles.  We discovered in PT that I have a really hard time riding a regular stationary bike.  Each rotation was incredibly jerky, and I was tired after only two minutes.  It turns out that biking was difficult because I still have a really hard time lifting my legs using my proximal (big) leg muscles.  The only thing that was causing one of my legs to go up in a rotation was the fact that my opposite leg was pushing its pedal down at the same time.  Hence the jerkiness.  My physical therapist had me switch over to a recumbent bike, and I was able to pedal in that position for ten minutes without getting tired.  This whole proximal vs. distal leg muscle business has also affected my ability to run vs. walk.  I'm still not able to go on runs (there's a bit too much proximal work going on there) but I have finally gathered enough strength to go on walks that last a mile or longer.  This is legitimately a big deal ♥.  Before I started running I used to live to go on two-hour power walks every day.  Even though I get pretty wiped out after my mile-walks now, I am able to pull a lot of hope and inspiration out of the fact that I can go on these walks at all.  In my mind, I'm just around the river bend from being able to walk for a full hour.  And once I can do that, I'll be on my way to resurrecting my Epic Power Walking career.  And once I can do that, I'll be just a hop and a skip away from running.  And once I can do that.... I'll be able to start training for half marathons again ♥.

Other happy health-related things: my eating habits are swinging back to a more normal cycle.  No more of this "If I eat too much I'll throw up but if I eat too little I'll throw up as well and did I ever mention I have a bit of a phobia of throwing up?" business. For about a month my eating habits were completely dictated around a paralyzing fear of having to vomit if I didn't play my cards right.  I'm not sure why, but I've been phobic about throwing up my entire life.  It's not about vomit in general - I don't mind if you throw up.  I'll hold your hair back if you need me to and I'll even clean up your mess when you're all done.  The point is, I hate having to puke and I am thankful that as of the last few weeks I've been eating and snacking out of hunger, rather than eating and snacking out of Terror.  Taking 3-4 naps a day is also a thing of the past!  I am now down to 1-2 naps or rests per day, which is awesome.  Adhering to a mild Nap Schedule is still incredibly important, but only needing two rests a day means I can get out of the house more often.  And finally, on the emotional health front, I am happy to report that now when I watch The Voice, I only cry when they do a feature on my favorite contestant, Jamar Rogers.  Oh okay, I also still cry during most of Erin Willett's performances.  (She really loves her dad!  I can relate to that!)  I just can't help myself.



Mayo: More Than Just a Condiment

Although I feel much better these days, I am still a long ways from being back to 100%.  Because of this, and because no doctor ever has managed to figure out what my Mystery Illness is or why it came about, my primary doctor is now truly considering Mayo Clinic as an option.  I know we've dropped the M-bomb several times over the last month or so, but prior to this week Mayo was an option they didn't want to talk about until I had exhausted more of my options up here.  I am fully okay to go down to Mayo Clinic if need be. My current healing process is pretty encouraging, but let us not forget that we are throwing up our Victory Vs because I am "napping only 1-2 times a day" and "going on walks" and "not puking in between meals."  These small milestones are great in light of what life was throughout most of March and April, but I have not exactly reached an optimal standard of living.

More importantly, I want to know that I am actually getting better.  I want confirmation that this nasty ordeal is truly leaving my body.  Ten years down the road I don't want to find out that really this thing never went away it just went into hibernation where it was able to grow and get nastier and gain evil powers and oh crap now I only have six weeks to live.  I mean, I do feel like I am getting better for reals (knock on wood).  But I would still like some answers.  Assuming that everything goes as planned and I am able to receive Medical Assistance, I believe that any work that I have done at Mayo will be covered through my MA selected insurance plan.  So why not go, right?  I don't know, maybe it's because money has been a struggle my whole life, but I feel this need to validate why I am not satisfied by simply "getting better."  I think that the money-worrying part of me feels like I shouldn't work with the world's best (and theoretically most expensive) doctors since I'm no longer hooked up to heart monitors and IVs, almost as if I am worried that I am no longer "sick enough" to merit a trip down to The Big Dance.  A life time of financial frugality is battling with a gut instinct that says I should go see any damn doctor I want and not feel guilty about it.  We all have our issues that can't be fixed with tissues, so to speak, but my gut is telling me that I shouldn't let this particular type of baggage interfere with an already tricky healing process.  Since I always go with my gut, I will most likely head down south at some point.  I just wish I wasn't so up in my head about it right now.


Dodging a Series of Catch-22s

My last day of work was on March 18th, and my insurance was cancelled, well, today.  But I have always been a Super Duper Planner/Take Charge Of My Life type of girl, and thusly spent the past month trying to prepare for a multitude of impending financial predicaments.  After spending countless hours on the phone with social workers, insurance reps, COBRA workers, unemployment case managers, and more, I found myself hitting a series of financial dead ends.  It went something like this:

Once my insurance ran out I had the option of signing up for COBRA to extend my current plan.  Unfortunately I would be paying for my entire premium myself, which is something I couldn't do more than once before I ran out of money.  But because I am still sick, I need to have some sort of insurance because I still have a lot of doctors' appointments to go to, as well as Physical Therapy.  If I don't continue PT and the like, I won't be medically cleared to work.  So I thought, maybe I can get unemployment to help me pay for COBRA so I have some sort of health insurance while I'm waiting during the 45 days it takes for Medical Assistance applications to get reviewed and approved.  Oh but wait, it turns out you can only collect unemployment if you are medically cleared to work and actively seeking new jobs.  So I applied for Medical Assistance but now if that gets cleared I can't make more than $681 a month or I loose my MA.  Which I guess is fine for now since I can't work and am not making any sort of income anyway.  But crap I have student loan payments and other bills, so I still need some sort of income.  But I can't collect any type of Social Security or short-term disability because no one knows what's wrong with me yet, so the doctors can't declare me temporarily disabled which means I don't qualify for any federal assistance programs.  But thankfully when I applied for MA and food stamps I was able to apply for cash assistance from the county.  Unfortunately I don't qualify for any assistance from the county because I am currently living at home and to get money from the county you can't be living with anyone that makes more than $231 a month.  So I can't get unemployment or social security or temporary disability or county assistance.  Annnnnnnd, I'm still not medically cleared to work.  So, right now I'm sort of screwed income-wise.

The good news is that the workers at the county building put a Medical Emergency Rush on my MA application in the hopes that I will be cleared for MA right away without having to wait around for a full 45 days without insurance.  Another great thing about MA is that it can be retro-active once it kicks in, which means it should cover the cost of any PT and doctor appointments I have between now and my MA start date.  So at least I will be medically covered in due time.  And thankfully I spent the last year making really aggressive payments on my student loans in preparation for my South America trip, so if I can scrape enough together to make one last payment I won't have to make any more payments for the rest of this year.  That means all I need to worry about is my phone bill, my credit card bill, and the cost of gas.  Although my resources are dwindling I figure I have at least another month before I run out of money.  All I can really do for now is hope that I'll have recovered enough to do some amount of work before that time comes.  In the mean time, if any one knows of any lucrative ways to make cash besides selling drugs or selling my body, please let me know.


Optimistic Future Plans

Although I've been riding a financial roller coaster for the last few weeks, my increase in overall health has kept me optimistic and hopeful.  As such, I'm continuing on with the life plans I had set into motion before I hit this Medical Detour.  Namely this affects my plans for Grandma's Marathon, my trip to South America, and my application to the Peace Corps.

Because I am incredibly stubborn, I have decided that I am going to participate in Grandma's Half Marathon even if I have to walk the entire thing with my super sweet cane in hand.  Here in Duluth we host Grandma's Full and Half Marathon every June.  It's a pretty big deal - people from all over the world run it! Grandma's is famous for having a beautiful course that runs along the North Shore of Lake Superior all the way into Duluth.  The full marathon also happens to be a Boston Qualifier.  The half marathon is so popular that you can only get in via selection through a lottery system.  This year some 12,000 people entered the lottery system and only 6,300 people were selected.  And I was one of those people.  I was beyond excited to make the lottery, which makes me want to Half-It-Up this year even more.  Don't worry, I'm not going to do any running if I'm not strong enough to run.  I'm not interested in hurting myself or experiencing a set-back.  I just want to do the best that I can for the sake of doing it.  If they have to kick me off of the course because all of the Kenyans running the full marathon are about to blast through, then so be it.  As if to taunt these aspirations even further, I just received my bib number in the mail today. I fully plan on putting it on come race day.

On October 1st my best friend and I are planning to start a tour of South America ♥.  We've been planning several variations of this trip (which Ashley and I have dubbed our "honeymoon") since 2009.  In preparation for this grand adventure I spent the last year logging crazy amounts of overtime at a horrible job so that I could make double and triple payments on my student loans, as well as save money for our trip back to my Original Homeland.  Although we were clever enough to purchase insurance on our plane tickets, I am pretty damn determined that we are not going to have to use it.  We will go on this trip.  I will be strong enough to do all of the adventurous things we've been dreaming about.  I will hike to Machu Picchu the day of my 30th birthday.  Because I deserve to.  Are some things sort of up in the air right now?  Sure.  Am I going to give up on our dream trip?  No. Freaking. Way.  In fact, yesterday I started getting a handful of the vaccinations we'll need to receive before we head south to our Sister Continent.  I checked with my Infectious Disease doctors to make sure that this Mystery Illness wasn't going to mess up any of my vaccinations.  Meaning, I made sure my immune system wasn't so weak that I would accidentally give myself whopping cough by getting the whopping cough vaccination.  The ID doc said I was good to go, so now I sit here typing with a stiff left arm because I forgot that tetanus shots make you stiff and sore for 1-3 days ♥.

As you can probably guess my Peace Corps application has taken a back seat since all of this craziness began.  That is not to say that I have abandoned that cause.  In all actuality, the Peace Corps actually factors into my decision to go see the doctors down at Mayo.  To be accepted into the Peace Corps, you have to pass some pretty intense medical screenings.  I'll admit, I don't want to have to write something vague like "Yeah, so I had this really weird and really scary Mystery Illness for few months that no one could diagnose but don't even worry about it 'cause I think I'm all better now" on my medical history forms.  Call me crazy, but I feel as though such a thing might bring my application process to a screeching halt.  Rather, I'd like to write something more along the lines of "I had 'This Illness' for a few months at the beginning of 2012, but thankfully the doctors were able to diagnose me and they gave me 'These Medicines' and now I am all better."  Of course, joining the Peace Corps is not my number one concern at this juncture in my life, but it is still something I very much plan on doing in the future, and so I have kept it in the back of my mind throughout this whole ordeal.

And so!  Thus concludes our journey to the Magical Land of Updates.  We've covered Health, Finances, and Future Hopes and Dreams all in one sitting, haha.  Hopefully I'll have more news to share sooner than later.  Thank you so much again to everyone who has followed my updates.  And triple thank-yous go out to everyone who has taken the time to call, text, write, visit, and send care packages.  All of the positive energy and love you've all sent my way has seriously had a huge impact on my healing.  Your love vibes are truly a powerful thing.  Thank you for sending them my way! ♥