Monday, June 8, 2015

What happens when *I* get a cold

Autoimmune disorders are no joke.  And I had just about zero idea of that until I was diagnosed with Sjogren's Syndrome at the end of last summer.  I was one of those "but you don't look sick" people.  Can I just tell anyone I ever thought that about how terribly sorry I am?  I was a fool and you were doing a great job of keeping up appearances.  Before I was diagnosed, I just knew something was wrong with me but had no idea why I would get sick repeatedly, have a hard time healing, wake up feeling like every joint was breaking.  Now that I know it has no gotten any easier because something like a little cold knocks me so far down.  And even though I know how to advocate for my well being, a lot of doctors are dismissive because they don't believe me or think I'm too fat (seriously told to just lose some weight and I'd be fine) or they just simply don't know much about Sjogren's Syndrome.

So 12 days ago, I started getting a sore throat.  This is a red flag to me.  Soon the sneezing started.  Yes!  My body acts like I'm having a horrific allergy attack when I begin to get sick.  My eyes water, my nose runs, and I sneeze about 7,000 times.  I started taking my tried and true combo of Nyquil, essential oils, and lots of fluids.  I slept and slept and the rest of my family started getting sick as well.  Of course, I start to dismiss my autoimmune issues because "it's just a cold".  WRONG! WRONG! WRONG!  I called my normal doctor and asked them to call in a prescription of steroids and some cough medicine.  While I love my doctor, the communication lacks a bit.  After two days of not getting the actual nurse on the phone, I went to an urgent care clinic.  I told the doctor, twice actually, that I had Sjogren's.  He never even indicated he knew what that was.  He misses a few things, like my left ear infection, and draws blood.  Oh and a strep test.  Nothing about my symptoms said strep other than my sore throat.  No fever, lots of sinus congestion, congested cough and wheezing.  Not surprisingly, the strep test was negative.  And my white blood count was normal but my neutrophils were elevated.  This can indicate a bacterial infection but more likely is an autoimmune response indicating inflammation. The only treatment at that level is steroids.  I leave with an antibiotic and a cough medicine with the same ingredients as the Nyquil I was already taking.  That trip and those medicines cost me about $60.

By Friday, 2 days after the urgent care, I was still very sick and my regular doctor finally said she would happy to give me meds, if I came in.  A 45 minute drive and 1 hour wait later, she decides I am sick but it is viral not bacterial as the urgent care doc said.  She also tells me that 1 ear is horribly infected and the other is working on it.  I get 2 shots, a new antibiotic, new cough medicine, and a steroid pack.  That trip cost me over $70.

While I am feeling much better, I am still quite sick.  It will take me another few days to completely recover and regain my energy.  Oh and I did not even mention the best part.  Those steroids that are the only thing that will make me better?  Those are also causing me to lose my eyesight.  Yep, at the ripe age of 38, I was diagnosed with steroid induced cataracts.  Every time I take steroids, in a shot or dose pack, my cataracts are getting worse.  I have already had steroids 2 other times this year.  Most people think, "I had cataracts surgery and it's no big deal." or "Once you have the surgery, you'll be fine and can see again."  I have a hopeful heart but I have a tendency to over produce scar tissue and that is NOT something you want on your eyeball.  I also have a tendency to get the random, weirdo side effects come with whatever I have done.  With cataracts surgery, that includes blindness.  That is terrifying to me.  My choices are so limited though!

I am so blessed to be a stay at home mom right now.  I would not still have a job if every time I got sick I had to take weeks off to recover.  I am fortunate to have great medical insurance and the money to even go to the doctor.  And the money to afford the medicines.  That is not always the case though and we've had to borrow money a number of times to get us over a hump because I had multiple doctor appointments or had to go to the emergency room.  And my heart aches for those who cannot afford their medications or their medications are on a nationwide shortage or they've lost their insurance because they were too sick to work.

The next time you hear me joke about my Sjogren's or mention it or a random person tells you they have Rheumatoid Arthritis or Hashimoto's or whatever, know that we are sick when we don't look sick.  We want your understanding.  We want you to not feel slighted when we can't do things with you or we have to tell you no.  It's isolating and hard to say no but sometimes it's all we can do to get through the week.  And most of us are struggling to balance our lives so that we aren't grieving what we can no longer do and enjoying what we are still able to do for now.  It's hard!

Lots of love and soft hugs to my fellow AI sufferers.  And lots of love to my family and friends who help me through this roller coaster that I never wanted to ride!

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