I'm Not Allergic To That!

At the age of four, I awoke and could not breathe. Not like shock from a nightmare about those dang flying monkeys from Oz that I'd had frequently.  For real, not breathing.  It was just dawn and it felt like I had inhaled something and could no longer get a breath out or in.  Terrifying! 

I made my way into my parents' room to wake them for help.  

They called 911. The phone lines were down. On a completely sunny morning in the spring no less.

They could not contact emergency services- no cell phones invented folks- and they pretty much freaked out while trying really hard to look and sound calm.  In dealing with my own kids many moons later, I can totally relate to what they must have been feeling... and I had access to cell service and Google for my kids!

I have very vague memories of being wrapped in a blanket, taken in just that and my pjs to a nearby fire station, and a man talking to me and my parents.  In my memories, he was nice and calm.  He definitely was not chastising them about no seatbelts, the filled ashtrays and probably the cigarette my mom would soon light, or my riding in front on mom's lap the entire trip.  That wasn't a thing...and yet we survived what I am sure was a reckless race for help. 

I know that I got to ride in an ambulance for the very first time- sirens on, but the next thing I actually recall is what I believe was a room in the ER at a hospital.  There were people everywhere, lots of lights, and I was extremely cold. I have no recollection of what anyone was doing really and no clue what was said or when I got to leave, but afternoon cartoons were on by the time or day that I was on our sofa at home. Again, I am old.  There was no cable or Cartoon Network.  We had to wait and beg to watch our cartoons on the single tv we owned with maybe 10 channels.  So, I remembered the important stuff to a 4 year old I guess- terrifying incident, ambulance ride, scary people and lights, home for the coveted cartoons.  Oh- and not dying. 

It was the beginning, however, of a childhood of asthma, allergy shots, and medications.  It pretty much sucked.  There was no such thing as decent tasting medication in early 1975 and who wanted shots!

About the only good things that I can think of that came out of the experience besides getting control of the tv dial during cartoon times for some time?  I was allowed to have anything I wanted for being so good through everything at the hospital.  I got my ears pierced at Hecht's.  What a silly child! AND, I got to live.  I did not die that day even though my breathing came and went that morning. So that was good too.

But honestly, I hated being allergic to stuff! I hated the medicines I was given to counteract any reactions. One of which even made me aggressive and not a good kind of aggressive like in the cheer we had learned during rec football. I abhorred going to the doctor every single week for shots.  Shots that would increase in number over the years with the idea of increasing my immunity to allergic triggers. Another big HA! For years I even saved the final empty vial as a trophy of completing those and regaining control over my bodily responses to histamines. 

With the shots being completed sometime in elementary school, and with as-needed medications,  I had hoped that I would now be immune to all that I was allergic to. Ha!  Nope!

Adorable kittens and bunnies could trigger full blown asthma attacks.  Horseback riding caused hives all over, closing my eyes. Hay, grass, trees, dust, and nature overall were fun too.  All that to say that growing up in the country became quite the adventure!

"Hey- Want to come and help us bring in the hay?  We can play on the tractor and swing from the hayloft." Sure- Do you all have any Benadryl?

"Let's go over to the Orchard and pet the ponies!" Sure- Maybe they won't notice that I don't go close to them.

And my favorite?  My best friend raised, rode, and showed horses. Just going to her house included the inhalers, antihistamines, my own pillows, and extra changes of clothing. Luckily she did not care if I passed out after a ride, and we did it.  I rode one of her horses!

But, honestly.  No complaints.  I was alive and those shots were done.

And then weird stuff just kept happening.  Hell, I was even called hypochondriac by friends, joking but not joking I think. And thus began an even longer road of just being oddly sick or hurt.  For decades.  Talk about sucking!

A few years ago, after thinking I was lactose intolerant and thinking WRONG, I learned I was allergic to eggs.  A new splendid allergy that made life stinkingly explosive and unpredictable.  Yup.  I meant to write those words.  Talk about total embarrassment and fear of going anywhere or eating out.

TMI?  My musings may not be for you as we get going in the course of time.  I am like that box of chocolates folks- never know what you will get.  But I digress.

From there I learned that not only am I becoming "allergic" to new things, as many of us do as we age, and no this is one thing they could not blame on menopause, but my body was somehow become allergic in a way to itself.

Yup! That is what I said.  It is the easiest way to explain that my body is attacking itself and probably was all these years and possibly even on that day in early 1975.  You see that is what some invisible diseases do.  Autoimmune diseases.  They attack in ways that oftentimes appear to be something else because of how they attack.  Today they attack the lungs.  Then maybe your joints, your GI tract, nervous system, reproductive system, endocrine system, who knows.  Each human is so different and how these diseases manifest are unique in their manifestations to each individual.

Today.  I learned I am allergic to bees/yellow jacket stings.  Or maybe not.  It might be just my body's hyper-response to them.  The treatment is the same and we add it to the list for the rheumatology docs to figure out. 

But, it does not suck totally.  No matter what my body is doing these days, it sucks way less than all of those little problems and diagnoses have over the years.  Why?  Because I know I am not crazy, like my first neurologist implied until my first seizure that could be measured by her equipment.  Or like the first gastro doc I had who suggested I get a new job after spending years to become a teacher "so I could find calm and reduce anxiety provoking GI issues." Or the numerous tests that proclaimed there was never anything connecting or causing the myriad of issues I was experiencing.

Nobody wants to have an invisible disease that presents like nobody else who may have the same diagnosis.  But the best thing that has come out of it, of all of it? Well  two.  I know how to deal, mostly, with the ups and downs and oddities that occur because I know what it is and why things happen. And, as we might say about the craziest things of our youth, "But did you die?"  Nope I have not.

It has been an interesting ride and I am not sure how many ribbon tattoos I need to get to catch up with all the diagnoses. But I am still standing. And I plan to keep riding- just maybe not horses.

Maybe I will see if my friend Karen's family still has cows.  Not allergic to them yet and you can ride them!

PS.  To learn more about rare autoimmune diseases and other rare diseases just Google - rare diseases.  You will find the NIH hosted site and many groups.

PSS. I am currently living with Undifferentiated Connective Tissue Disorder - related to signs of Systemic Sclerosis OR UCTD from SSc.  Say that ten time fast after a Tito's :)