My story thus far is a long one, with many twists in the road. But I shall endeavour to tell it the best I can, and hopefully as succinctly as possible. I wouldn’t want to keep you here all day, or was that all night.
In January just after arriving back to boarding school in London (I live in South Africa) I fell ill. I had sharps pains in my right abdomen. At first when i went to the nurses they dismissed it as merely stomach pain, may due to a virus or something. But the pain didn’t abate, and I was back a weak later, to see the doctor, who came twice a week. She examined me, and due to the position of the pain and my response, decided it could be appendicitis.
So off to the ER I went, and thus began what seemed like an endless waiting game. You see in this ER you first wait a couple hours to go in for one of the nurses to take your vitals, blood, and urine sample. Then you wait at least a couple more hours for those results to come back. At least I thought to bring a book with me, and my House Parent (my school guardian) brought some snacks.
Anyway, where was I.. Oh yes, once the blood and urine results came back I was seen by a surgical attending, who from my bloods thought it was unlikely I had appendicitis, but after examining me was convinced I had. So the waiting game continued, as we patiently, or in my case grumpily, waited to be seen by the surgeon on call.
While waiting my house parent and I noticed and joked about how all the prisoners/criminals, and there seemed to be an inordinate amount of people in handcuffs there that evening, went through much more quickly than anyone else. Ironic no? I guess they want to get them out quickly, so that they didn’t frighten people off?
Finally about 8 hours after I arrived I saw the surgeon on calls, who also thought it might be appendicitis and kept me in for observations. But no the wait did not end there. Apparently there were no beds available, oh joy.
After a couple days in the hospital they decided to do a laproscopic surgery to remove my appendix. however while in there they found a vitaline band (remnant from my umbilical cord, which in most people disappears after they are born) was wrapped around my gut, so they took that out instead, as the appendix appeared normal.
Two weeks later I was still in pain, still in the same spot, and my primary care physician still thought it was appendicitis. So back to the ER I went, to repeat the whole experience once more. This time due to bed shortages once again, I landed up on the maternity ward. Which was an interesting experience to say the least. Another lap scope, and this time they took my appendix out, and the surgeon swore that it was inflamed. Guess what it wasn’t.
Two weeks later I still wasn’t better, so back to the ER my doctor sent me. It was like a nightmare that didn’t seem to want to go away. The funniest thing though. when I saw the attending, he told me that if I hadn’t had my appendix removed, he would have said I had appendicitis. I almost laughed, right there and then.
So after all of this, my parents decided to bring me home, where after multiple consultations with an array of doctors I was diagnosed with Enthesitis Related Arthritis and Raynaud’s phenomenon. Turns out the pain I had was referred pain from my illiac crest (the boney crest just above your hip). Go figure. I had two infusions of cortisone, which cleared most off it up, and for the first time I could tell the pain was from my joint.
I decided to go back to school to finish my exams, where slowly one after another more inflamed joints started to pop up. But I managed to get through half of my exams, and did the other half a couple months later. I have gone through multiple DMARDs, NSAIDS, pain meds and have failed my first Biologic, Enbrel.
My diagnosis is now rather questionable, or at least there are questions of whether I have other autoimmune diseases as well, as I have continued to show more and more symptoms, as I now have muscle and systemic involvement, as well as my joint issues.
There have been weeks where all I can do is lie in bed, as even walking or getting up is difficult, but I have also had days where I am able to join in a basic ballet class. I, like many others, am riding the autoimmune roller coaster. It is though that I have probably been riding unrecognised for a long time, as I have had joint problems and a have frequently been ill since the age of eight.
I will tell you how it goes.
Also feel free to email me if you have any questions, I am not a doctor, but I will try my best to help. Also if you wish to share your story, or just want a friend to join you for the ride. My email address is firstname.lastname@example.org