What is an Autoimmune Disease?
Who here has dealt with an autoimmune disease? I am not here to write about the medical statistics and findings of these diseases, but here is a quick definition of Immune System Disorders.
If you go to WebMD you will find, Immune system disorders cause abnormally low activity or overactivity of the immune system. In cases of immune system overactivity, the body attacks and damages its own tissues (autoimmune diseases). Immune deficiency diseases decrease the body’s ability to fight invaders, causing vulnerability to infections.
I am not an expert, nor do I want to be
I am not here to write about the medical statistics or findings for these diseases, it is definitely not my specialty and honestly, sometimes I am not even sure that I want to know the answers. It astounding now that I have been given a possible diagnosis of an auto immune disease, how many others have told me that they too are dealing with something similar.
How many of us just coast through life thinking that it is totally normal to feel so run down and, for lack of a better word, just plain pooped out on a normal basis? I did. I thought that it was just part of getting older and doing too much. Thought that I was weak because I needed to nap more than a lot of friends my age and some days I just hurt. My common thoughts were,
“ I’m just out of shape.”
“ I did too much yesterday.”
“It must just be my anxiety or depression making me feel run down.”
As the fatigue and body aches have really started to worsen and multiply, I decided that now is the time to figure this shit out and take care of me. No one else is going to do it and dammit, I am important!! (Sometimes, you just need to say it out loud and remind yourself of time to time, even when you don’t believe it).
Symptoms over the years
Sickly or sick of matching outfits?
I don’t know that I can pinpoint when it all started. I remember being a kid and I would go to Aunt Di and Uncle Tom’s house for the weekend. Loved it. Well, we would spend our Saturdays doing a bunch of different things, like checking out the Aurora outlets, going to Patterson’s Fruit Farm for apples, festivals, who knows…always something. I just remember waking up on Sunday and feeling so foggy and worn down. It has always been the worst for me, come 1:00. I start getting achy and tired and just feeling like if I don’t lay down, I will get sick. As a kid, you just push through, but I always felt like crap. I would get sick all of the time, too and when I look back at pics, I feel like I just looked sickly. Did it all start then? I don’t know.
The Dreaded Kissing Disease, Mono
Fast forward about ten years or so and I was still that sluggish feeling teen. I say it that way because as a teen when I really started to come out of my shell, I would hide behind a vibrant personality with a smile that said, “my life is perfect.” Some people even fell for it. Really, I was just excited to show off what four years of braces can do for an extremely fucked up smile. (There’s that Mommy ADD again…)
One of my bffs, Mary and I. 2000
I was 18 and my year was filled with parties, graduation, prom and all of those other monumental, coming of age events that take place that year. I had a steady boyfriend, I worked a lot and I was looking forward to attending Lakeland Community college in the Fall.
My doctor’s appointment confirmed that I did indeed have Mono and that was why naps were a necessity. I always felt like crap, but I just kept rocking on and pretending I was fine. I’m kind of a trooper in that way. Well, kind of. Moving on, because that was what I did and I was never given any other diagnoses.
Fast forward 10 more years
One of the hardest things I have had to face thus far was losing my Grandma. She was my rock. She was the person I called when I was sick, feeling down or just needing to hear her voice. It was a little over two years ago and I went through a deep depression. I thought that was why my whole body hurt and I literally felt like I had the flu for weeks on end. It was rough, especially with two young kids that depended so much on their Momma.
I have always had so much guilt when I start feeling like I hit a wall, ok maybe more like a bus hit me, but who knows for sure! Relaxing and staying sedentary is not really something that defines the energetic, the usually highly active person I pretend to be. I feel bad when “Mommy, needs to lay down, can you watch some cartoons?
OR
“Mommy doesn’t feel good, I think we will just stay home. (instead of taking the kids out to get some much-needed exercise and playtime). I feel like I am not living up to the expectations that I have set for myself as a fun Mommy. It really bothers me.
I went to the doctor, yet again, wanting to change my depression meds. You see, I am lucky that I have people like my husband, Shannon, and my best friends, Jackie and Mary that know when to give me a stern talking to and not let me get to the point of no return. I was close.
They have seen me through my many ups and downs.
The doctor went through all of my lovely symptoms and decided to run a bunch of blood tests. Not abnormal for me. I have had so many tests for my thyroid and anemia over the years, with no luck and no answers. Wonderful. Who doesn’t love getting poked and prodded, waiting weeks for answers, to only get none and still feel like total shit?
Epstein Barr Virus or something like that
Blah, Blah, Blah. That’s what I feel like I hear when I am getting test results without any real answers or ways to make it better.
This time, it was confirmed that it is my Epstein Barr Virus acting up. Whatever the hell that means (I know what it means, but not what I wanted to hear). This is something that I will deal with the rest of my life.
So pretty much, I have been told to get used to feeling like I am hungover from doing the normal household cleaning chores, don’t stress, get lots of rest and pretty much, get over it. Great.
Chronic Strep, It’s a thing
Oh and also, you have Chronic Strep. I guess that’s a thing. I don’t know, I just go with it and smile and nod.
So yeah, you know those gross tonsil stones that you get (look it up, you’ll be glad you don’t get them), that makes your glands and throat swollen? You feel like you are getting sick because your throat hurts and it makes you feel run down, that’s Chronic Strep. Fricking wonderful (and pretty darn gross, too). If you are reading this, I am positive you will make sure to lock up your babies and never share a drink with me again. These are not symptoms I like to share with others, so instead, I will now write about it for many to read. Makes sense.
I have always had the weirdest things, but am I alone? Am I just hyper-aware and a big baby about things? These are the thoughts that go through my head. I also always try to remind myself that it could be so much worse and others are dealing with much larger issues. Some days, it doesn’t make it easier though.
Rheumatoid Arthritis or Lupus, not something you want to hear
In the past few months, my aches and pains have become a lot more noticeable and hang around more consistently. I am sure it has a lot to do with the colder weather, so if I could be taken away to a nice tropical vacation, that would be ideal. That being said, I am done living life without answers and I decided I needed more and I would be making sure to get more in-depth blood tests and a referral to a specialist.
In comes Ms. Emily Barker, NP. She is truly amazing and I would trust her with my life. The woman is smart beyond her years and her bedside manner is top notch. I’m not gonna lie, I was a little intimidated by her because she is absolutely gorgeous and my husband currently sees her ( I was constantly teasing him that he would put on his favorite cologne and make sure he showered before his visits just for her.)
Honestly though, once I met her, I felt like I had known her for years. She truly makes you feel like you are her only patient. She spent no less than an hour going over all of my medical histories and just getting to know me and my concerns. Reading through my piles of notes, left from the prior doctor and telling me how she would proceed to find answers for me. She even went as far as to draw diagrams to show me how the blood tests work and what kinds of answers we were looking for. I will never go to anyone else as long as she is still practicing. Truly one of a kind.
We played phone tag a bit and honestly, I was not even sure that I really wanted to hear what she had to say.
She paused.
“So, the results of the speckled blood test of something or another (I can’t remember the wording and I am not medical) came back abnormal.”
“Your ANA results (antinuclear antibody test) came back with a positive speckled ANA pattern. The norm is 40 and below, yours showed to be at 160. This is usually prevalent in a patient with connective tissue disorders like Rheumatoid Arthritis or Systemic Lupus.” (I had to look online for this particular wording because seriously, I can barely remember my kids’ names most days.)
What to the what? That can’t be good. I mean a high score would usually make me feel like a genius, but I am not sure this is one that I want. Did she just say Lupus or Rheumatoid Arthritis? What is this autoimmunity thing?
Ugh. It took me a minute. I had to lay Aubrey down for a nap and didn’t even have time to call Shannon. I rocked her, but I could barely get the words out to her favorite lullaby through the tears. It sounded more like a croaking frog. I just bawled and laid my head on my sweet little baby while I rocked her to sleep.
And now we wait.
To be continued…
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