It’s been at least seven years since the first test. Since the first test popped up and the doctor said, “Hey, something might be wrong.”
But I should back up.
I’m twenty-two years old, and my medical chart is longer than most 50 year olds. And, unfortunately, that’s not an exaggeration. Since I was a young teenager, 13 maybe, I’ve had excessive pain. Pain in my muscles, joints, everywhere. You know when you go to the doctor and they just poke you just to make sure everything’s cool? Those little, insignificant pokes would cause me to jump off the table. All of this pain was ignored: “Oh, it’s growing pains!” “Oh it’s gluten!” (bye, bye gluten) “Oh, it’s not gluten? Must just be growing pains!”
I went to an allergist at some point in my teens, because I was allergic to a ton of antibiotics and figured it’d be a good idea. I told him all about my pain and how it, well, sucked. And he said he’d run a few tests in conjunction with the allergy tests he needed to run. I thought, okay, whatever.
ANA. Anti-Nuclear Antinbodies. That basically funnels down to meaning that those antibodies in your body that are supposed to fight infection, yeah those little guys, they’re fighting against themselves kind of. It’s not normal for this test to come up positive for someone who is 14 or 15. But without follow-up testing, it could be meaningless.
I went back to my allergist one day and he sat me down. He started off with, “I don’t want you to go googling anything or getting worried. Because this could truly be nothing.” And that’s when I knew it probably wasn’t “nothing”. He talked about Lupus and Lyme Disease and all these things it could be, but I had to go see a Rheumatologist to run some further tests. Okay, let’s do that!
He sent me to a doctor at the local hospital. This doctor didn’t usually take minors, he was an adult-only physician. My allergist got on the phone with him (with me sitting in front of him) and told him he had to take me, rambling about my maturity and that I needed the best. I would come to find out that “best” was subjective.
We ran more tests, at this new doctor’s office, and some things popped up positive. SS-A, the test for Sjogren’s Syndrome. This doctor kept asking me weird questions. Was my mouth ever dry? No. Were my eyes ever dry? No. Was I sensitive to light? I mean, I wasn’t fond of the sun, but I wouldn’t say I was sensitive. After 30 minutes of trying to fit me inside a box, he wrote it off. He diagnosed me with Sjogren’s Syndrome and off I went. I googled the syndrome and felt like my symptoms kind of fit – the pain was there and if the tests said yes, then who was I to argue?
That’s the problem these days with medicine. We just accept a doctor’s word as all-knowing and don’t question anything.
I did. I told my allergist he tried to fit me in a box and I didn’t like it. We ran the tests again. Now, while ANA was still positive and out of whack, SS-A was now negative. Funky, huh? Well, guess what? SS-A has a high tendency of false positives.
Well, at that point, I said F- this doctor, I want a different one. Mind you, my mom, since I was only 15/16, was also helping me advocate for myself. We researched the best rheumatologists in our area – in fact, in the southern part of our state. And we read a lot of things and picked one. But she was booked – not accepting new patients. But her colleague who worked in the same office – he was. Okay, I’ll go for it.
I went in to see this new doctor and told him all the history. The pain I was constantly having and the tests that I had had performed. He ordered more tests. Thus began my 2-3 day per week visits to the local lab to have blood drawn. Inflammation – SED Rate – totally high. C-Peptide (another form of inflammation) – totally high. And the rest of the tests? Normal. Stupidly normal.
What one can gather from this information is that there is inflammation in the body. Whether the pain is causing the inflammation or the inflammation the pain, no one knows. They’re two little peas in my misguided pain pod.
Eventually, after me not fitting any other boxes. He decided to label me with Fibromyalgia. Now, I’m not saying this disease is fake, but I’m not saying it’s real either. To each their own opinion, but in mine, I think Fibromyalgia is the diagnosis you get when the doctors can’t figure it out. I tried medicine, but I hate taking any type of drug and I had bad reactions.
Eventually, this same rheumatologist decided that *eventually* my disease would present itself. Mind you, while all this is going on my spine is also a mess so we tried an epidural with steroids to calm that inflammation – HAHA NOPE SORRY. Had to be put under for that too, because there was no way someone was sticking a needle through my back when I could barely handle anyone pressing on my body.
So “eventually”, this led us to more doctors. Neurologists, endocrinologists, God the amount of –ologists I’ve been to is vast. Eventually, he sent me to an oncologist, because maybe it was some acute leukemia or something we were able to see.
The oncologist ran some preliminary tests and some weird things came up. Fibrinogen levels were high, some CD45+ Dim stuff that I don’t understand was happening or circulating or whatever scientific terms they wanted to use – something wasn’t right. So we did a bone marrow biopsy (p.s. did you know these cost some exorbitant amount of money? Like $20,000 to stick a needle in me, exorbitant.)
Here we are, 6 years from the start of this journey, discussing cancer. And at this point, I was so hoping they found something. How sad is it, that after years of tests and pain, I was hoping for cancer? I could see results before the doctor could and the bone marrow biopsy came back normal. We went back in to see him, and he said everything was normal, and the abnormal tests probably had something to do with my autoimmune disorder.
I said thank you, through gritted teeth and slightly trembling lips, and I put my sunglasses on, because at 19/20 I didn’t want to let people see my tears. My mom and I got into the elevator and she teared up. Saying how she was glad nothing came back. And how, “Even though it wasn’t the answer you wanted, I’m really glad it’s not cancer.” I rolled my eyes. Trying to explain was useless.
Now, I’m also glad it wasn’t cancer. But since then, two years later, I’m still searching for an answer. I’m still in constant pain, I may even go as far as to say it’s getting worse.
It’s one thing to hurt yourself doing an activity or at work or have some disease that is diagnosed. It’s completely another to go undiagnosed and have to explain to people, “Well, I hurt all over. I don’t know why.” My family is probably the hardest. My parents get angry sometimes – well, maybe angry is too strong, let’s go with frustrated – because I just hurt and don’t want to do simple things.
If you’ve ever known what it feels like to have pain doing every day activities – I mean EVERY DAY – like putting your shoes on, getting in the car, standing up, sitting down, then maybe you understand. To be in constant pain is not to say that you are in a constant state of depression or constantly immobile. I am far from immobile. Sure, there are days that it hurts to get out of bed and it hurts when someone hugs me just a little too hard, but I suck it up and deal with it, for the most part.
For the most part, I’m a fighter. I don’t know my enemy, I don’t know what I’m fighting; But I’m fighting. I have bad days, where I complain to my mom or my amazing boyfriend (who still loves me even though I’m very much defective) or I cringe at the idea of having to pick up my laundry basket. But for the most part, I keep my mouth shut, and when something hurts, I tell myself to ignore it. Because until I know what I’m fighting against, I can only fight with perseverance.
I’ve had the same rheumatologist for so many years. Going on six now, I believe. Some tests popped up last week that are leaning towards my Thyroid being messed up. So, maybe my next article will be, “That Time I hoped it was Thyroiditis”. Maybe this whole thing is just me complaining because today was really hard. But for now, the title of this chapter of my life is “Breathe” because sometimes that’s the only thing I can control.