My AutoImmune Journey

You know the saying “The stars were aligned”?  You typically hear it when there are a series of events or signs lead you to a certain place in time, a positive place.  When things work out perfectly and you find yourself flooded with something wonderful, positive, and life changing.  Well as it turns out for me, the stars were in fact aligned, but simply to remind me that my body hates me.  I went in to see my primary care doctor because I was having extreme stomach bloating and pain, I walked out with an undiagnosed autoimmune disease (basically).  As if the world wasn’t already tired of hearing about my first medical condition, this is the beginning of my new medical journey for me…

August 22, 2016

This is what I looked like mid workout, week 1 on my first new training block utilizing BFR (blood flow restriction training).  I was over the moon and so beyond excited about finally feeling (semi) consistently well enough to have some structure in my lifting/exercising.  My coach put together a fantastic 100% fully customized training block for me and I could not wait to dive right in.

Unfortunately after two weeks of feeling fabulous, my body decided it had enough of feeling good and I was put right back into a huge flare up.  Since February, my flare ups were only lasting 1-3 days and typically controlled with extra rest and taking it easy with any/all activity.  Not this flare up though.  I was pretty much knocked out cold and down for the count.  It was the first time in 7 months where it was bad, and I mean bad bad.  What made things even worse was I started to have daily stomach issues.  My back was on fire, my nerves were going crazy with extra numbness & tingling, AND my stomach was out of control.  I literally could not move because everything hurt from my toes right up to my hair.  Worst flare up this entire year, hands down.  This is what my stomach looked like for a good deal of that flare up.

After a handful of days spent like this, I remembered my primary care doctor had ordered some blood tests for me to do months prior.  At the time, I was instructed to wait until pain was at my highest because the tests were supposed to gauge my inflammation levels amongst a few other things like ANA (a marker for possible autoimmune diseases).  As far as pain goes, I had brought my levels way down already this past year (all naturally mind you), so I completely forgot about having these blood tests done.  However with something new clearly going on at this point, I luckily remembered they were waiting on me at the lab.

In all honesty, I didn’t expect anything would arise from these tests.  I knew my inflammation would come back high (especially mid flare up), but certainly wasn’t worried about anything else.  Once my flare up was over, my stomach would go back to normal and all would be back to my routine.

Nope.  Didn’t happen quite like that.

Instead of being able to see my tests results online like I usually do, I got a call from my doctors office requesting me to come in for an appointment to “discuss my results”.  That’s NEVER a good sign.  You do NOT want any doctor asking to see/talk to you because of blood work or imaging.  Oh the flood of emotions and anxiety and uneasiness that went through me for those 2-3 days until I could actually speak to my doctor!  Literally one of the very first things out of my husbands mouth was “Get OFF the internet.  Do NOT Google ANYTHING!”  Unfortunately, I’m stubborn and didn’t listen… and my husband certainly take his own advice because as soon as he would leave for work or head out to pick Makena up from school he was scouring google for autoimmune diseases, symptoms, signs, etc.

Two peas in a pod 🙂

As it turns out yes my body was clearly inflamed, but my ANA test actually came back “abnormal” as did my C3-C4 levels.   I had elevated antinuclear antibodies running right through my veins.  NO wonder why I feel like my body is attacking itself sometimes… it actually IS!  Now we just need to narrow down which of the up to 80 autoimmune disease/s I have.  The sooner we figure out what else I have, the sooner I can come up with a plan of attack!  Some people rather lay in bed, pop pills, and complain… not me.  I’m ready to fight!  5′, #funsized, and possibly your worst nightmare.  I don’t play.

Step 1: more blood work, lots more blood work

Step 2: a long conversation with my doctor spelling out every single strange thing I have going on day to day.  This includes what I experience with my spinal disease and other random issues that have continued to progress even while bringing actual pain levels down.  This was the basic gist of things:

• sacral/lower back burning (24 hours a day)
• numbness/tingling/pins & needles/nerve issues (mainly lower body 24 hours a day, some upper body arms/hands intermittently throughout the day)
• urinary, vaginal, and rectal numbness (24 hours a day)
• heavy legs
• painful/stiff joints (mainly right lower body in hips, knees, ankles, and toes)
• difficulty finding words and speaking (this started becoming more prevalent last November/December)
• extreme episodes fatigue where I can’t even open my eyes
• spasms/involuntary movements (something that recently just started)
• balance issues
• leaking urine
• mouth ulcer (typically once a month I get one little raised sore/bump somewhere in my mouth that’s filled with clear fluid.  Once popped the sore goes away completely within 1-2 days.)

How’s that for a big giant puzzle???  What’s so difficult in this new journey is that so many of the pain/symptoms I have from my spinal disease mimic many autoimmune diseases.  The main one being Multiple Sclerosis.  Now that’s scary to think about huh?  Yup, our minds were initially racing at top speed (separately of course because no way would my husband ever want me to see his anxiety).  So many things to rule out.  So much to consider.  So many more changes on the horizon.

When diagnosing an autoimmune disease some people have a very specific list of symptoms that point directly to a diagnoses.  You have a butterfly shaped rash on your cheek, chances are you have lupus.  You absolutely cannot eat wheat because of an allergic reaction, you have celiac.  You have major insulin issues that are difficult to regulate, you have type 1 diabetes.  You lose a patch of hair on your scalp, you may have alopecia aerata.  You have swollen and inflamed joints, you have rheumatoid arthritis.  Some autoimmune diseases can more readily be diagnosed.  Sadly, I’m not in that category.  I’ve never taken the easy route, why would I decide to start now :).  Moving on…

Step 3: an EMG study to test my how my nerve and muscles are functioning

Every step of the way… this one is right there with me.  My biggest advocate, supporter, and basically best person I will ever know.

Smiling for the picture, but extremely anxious for testing!  I had no idea what to expect.  I knew I would be stuck over and over again with needles AND have electric shocks done for the study, but no clue how much it would hurt.  Of course I anticipated the worst which always makes this horrible.  Fortunately, its far less painful than a shot… quick and simple.  I would not have anxiety again if I had to repeat the test at any point.  It’s uncomfortable and not exactly how I want to spend an afternoon, but nothing like I was expecting.  Easy peasy!

These were the basic marks the neurologist made.  Lots of tape measure and pen marks all over my legs, feet, and hands.  I looked like a 2 year old who had just discovered the art of line making!

The good news is that all of the extra blood tests came back within normal range AND there is NO permanent nerve/muscle damage… yet!  One of the biggest concerns with my spinal disease is long term erosion as well as permanent nerve damage.  Because Tarlov cysts actually grow ON the spinal nerves, over time they will begin to show more prevalent signs of damage which cannot be reversed.  I already have erosion in my sacrum which puts me at high risk for fractures and breaks, but luckily my nerves and muscles are still in decent-ish shape.  The longer that spinal fluid sits on those nerves though, the more likely it is my condition will progress and be permanent.  For now though on this very day… I’m safe & thankful!

Step 4: the brain MRI

Oh. My.  God.  I don’t think I’ve ever had the amount of anxiety I had leading up to this scan.  Forget MS, honestly the only thing I was scared of was finding out was that I had a tumor in my brain.  I knew many people suffering with multiple sclerosis were managing symptoms and the progression of the diseases, but tumors and brain cancer?  Not quite as “simple”.  It’s a whole different ball game.  Although my husband didn’t show it outright, I knew he was just as nervous as I was.  He’s a pretty touchy feely kind of husband, but on the trip into the hospital he would NOT let go of my arm.  I don’t know if he was trying to calm himself or me, but I thought it was pretty cute…

Its a running joke in our family and amongst close friends that ever since my spinal disease diagnoses, I no longer “adult”.  I’ve given up nearly all tasks including bills, bank accounts, household stuff outside of cooking/cleaning, speaking on the phone to most people, and ALL things paperwork. Nope, no adulting for me!  I leave it all up to this guy and he happily does it ALL 🙂  In all honesty, he wouldn’t have it any other way.  My husband THRIVES on taking care of me and those around him.  It’s in his nature, his blood, and his heart.  Am I not the luckiest girl in the world???

Alrighty, lets do this… shout out to my radiology tech who took the BEST care of me.  He knew how anxious I was… how could he not know with me crying all over the place as soon as he said he was ready for me?!  The tech spent at least 5 minutes calming me down, talking about his wife and how they actually got a divorced a few years ago but were brought back together, asking about my family and my spinal disease, and putting me completely at ease.  The very last thing he said to me “OK, so do me a favor while you are in there?  I firmly believe in the power of positive thoughts.  As we do the scan think of ALL things positive.  Think of all things that make you happy.  Think that EVERYTHING will be alright and the scan will come back NORMAL”.

Yes sir.  I know I can do that for you… power of positivity… it’s second nature for me!  If there is a positive light to be found in darkness, I promise you with all my heart… I have already discovered AND felt thankful for it!  I got this…

And sure enough… without disclosing any official results, I already knew the scan was normal by how the tech spoke to me!  He was uplifting, kind, sensitive, empathetic, and went so above & beyond his call of duty.  THIS my friends is what the modern medicine needs MORE of.  True patient care!!!

And as if I didn’t expect this… my husband also needed to touch me the entire way home even though our hearts and minds were more at ease now.  Dear God, I LOVE this man…

Step 5: next stop is a cervical spine MRI thats scheduled for next Wednesday, October 26!

Step 6: During this whole new journey, yes I was researching various autoimmune diseases but I have also been extremely diligent in figuring out some sort of “treatment” for myself (OUTSIDE of “modern medicine”).  Since my insurance, most doctors, and traditional forms of medicine have failed me so terribly this past year I knew I would need to have a back up plan in place just in case I’m left in the dark (again)… totally helpless (again).

Regardless of what I’m actually diagnosed with I’m also a HUGE believer in being PROACTIVE!  We already know I have something, my body is in fact attacking itself so instead of turning to prescription drugs for a quick (only masking) fix, I went full throttle on alternative therapies & treatments.  Because I’m such a big advocate of using natural methods to treat medical conditions, it was time to kick things into high gear with a new regime.

I’m looking forward to sharing the new nutritional/dietary changes I’ve implemented which have actually showed HUGE improvements in nearly all of my pain/symptoms!  So so amazed and excited.  Next post will be dedicated to FOOD and the new lifestyle I’ve adopted!  Stay tuned friends.  Until then, wish me luck on my next MRI and hopefully tracking down exactly how my body is attacking itself 🙂