Tuesday, March 28, 2017

What is it like to have an auto-immune disorder?

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If some a few years ago would have told me I would have auto-immune problems just like my dad did, I would have laughed at them. I never expected to be one of those people that have an autoimmune disorder.


My journey this far:

I can't honestly say when my journey actually started and when I started getting flare ups, because I don't know. I don't think anyone truly knows when they first started getting flare ups. I can only start when I noticed something was wrong and it wasn't normal.

Last July, I remember sitting around and trying to fall asleep,  and realizing my feet and hands went numb. Best way to explain it to someone who has never had their extremities go numb, the feeling is a lot like when your foot falls asleep, I just knew my feet and hands didn't fall asleep. It happened a few times when I was walking, that my feet went numb, and it concerned me. I called the doctors office to figure out what was going on.

My nurse practitioner had me take tons of blood work. One for was for Multiple Sclerosis, another was for my vitamins and eletrolights and one was my ANA. Of course I was worried, my dad had Lupus, RA, Fibromyalgia and a few other things. So I kind of knew I could have a problem.

I remember going back for my appointment a week or two later, and to be told my ANA was a bit high, positive ANA can mean anything, it can even be a false positive by the way. I was told that I'd have an appointment with a rheumatologist

So far I've had more tests, most coming back normal, my ANA is still high. According to my Nurse Practitioner she's said that she's sure I have something Lupus related, but still have to have my 
rheumatologist on board with it.

The flareups and symptoms


The thing about auto immune problems in general, the symptoms aren't always the same for people, but there area factors that stick out for a lot of the people who have lupus or any other auto immune disorder.

When I'm going through a flare up, I'm extremely tired, to the point I don't want to function at all. I'm not able to think. I'm constantly sore, my extremities lose their feeling, and I'm achy. The tiredness isn't like a normal tiredness, this is 10x's worse. It's like I haven't sleep in a year type of tiredness, and sometimes I do have to down a Mountain Dew Kickstart, Monster, or Rockstar, because I do get so tired it's the only thing keeping going for at least a little while. 



Headaches are another thing, I get regular migraines, occpital migraines, and lupus headaches. All of which are different from each other. But my main problem is the lupus headaches, I hate them with a passion but a lupus headache is a bit different to me than regular migraines, they don't really respond to anything, I've taken everything under the sun for headaches.

Us people with autoimmune problems have flareups, times when our illness is at it's peak and it's showing symptoms. They symptoms aren't always present. Which I know does sound confusing to someone but they're not always constant, weather, certain foods, illness, surgery, lack of sleep and a few other things can cause a flare up to occur. I'm still getting used to my triggers and what causes mine to happen.

Another thing people didn't know about auto-immune disorders is our white blood cells and platelets can  be low. When they're low, at least in my case I get tired easier than someone else. So when my step daughter is sick or I'm at the store I'm keeping my distance because I don't want to get sick again. I want to feel great, I want to feel normal. 


What the future holds for me

As of right now, things are unclear what's going to happen with my symptoms or my immune system, but I can say that I do have many more doctors to see and things to do. I'm in the debate on seeing a therapist to help me process everything going on in my life, because it's something that does play on my mind a lot. 

I may never get fully better but I do hope that there's going to be something that I can take that can help me live a normal life. I want to be active, and I don't want to be so tired that I don't want to do anything, I want to be normal. Being tired, and being unable to function normally is a dream.


My advice to anyone who might have an auto-immune disorder

For someone who knows something is wrong with themselves or has a doctor that's concerned that you have an auto-immune disorder, make sure they investigate it. Don't be afraid to tell your doctor how you feel, and if they don't agree with you, find a different doctor or take notes. A medical professional usually isn't at your home watching you or even knows how you are going about your daily life.

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