Hello my name is Christy S, I suffer from an auto immune disease called Sarcoidosis. I would like to raise awareness on this horrible disease. April is Sarcoidosis awareness month & I was hoping you guys would be willing to do a small story on this disease. Here is my story…
My name is Christy, I am 32 years old & was diagnosed with Sarcoidosis in Sept of 2009. It has been a very long & tough almost 3 years. It all started on a Saturday morning in May 2009 when I woke with terrible migraine & sinus pressure. So I took some clairtian with no relief, took zyrtec with no relief & benadryl with no relief! It was a holiday weekend so by Tuesday when I called the Dr I was in complete misery by then had a raging migraine for days & was starting to have fevers & horribles ear pain & pressure. Upon going to the Dr it was diagonosed with a simple sinus infection & was given antibiotics. Fast forward 3 antibiotics later when I was still spiking fevers up to 104 plus, headaches, pressure & now nausea & vomiting. I was landed as a direct admit to the Hospital where I was given IV steroids & was seen by an ENT. I was scoped & had testing done to no avail to why I was feeling the way I was. The scope showed significant inflammation but no sign of any infection. My lab works was all out of whack, nothing seemed right yet to the Drs nothing seemed wrong. This continued on well into August, on steroids things got better they took me off things went back to being worse. Nobody understood. I was seeing my PCP & two specialist yet everyone just stared in wonder. I was losing hearing in my left ear, I was dropping weight from not being able to eat, I was constantly asleep because the fevers caused me horrible fatigue. I barely left the house but for Dr appt which were three times a week. I was losing hold on my own life & I didn’t even know why.
I was finally sent to a Rheumatologist due to such high inflammation markers in my blood work. I was sent for a CT scan of my chest, abdomen & pelvis. It was crushing when the results showed lymphedema in multiple lymph nodes & I was told to prepare for a biopsy & most likely I had Lymphoma. OK prepare myself, for what? Chemo, hair loss, no quality of life? But I was prepared to fight. I heard of this disease & it was very possible to go into remission & percentages were on my side. So after the biopsy my husband & I went to the onclogists office to get the results. Its Sept 25th & I had been in terrible shape since May we were finally going to get an answer & get treatment! So the Dr walks in & says well good news, you don’t have cancer! Now let me explain something that may seem odd. At that point I felt the any weight that had been lifted off my shoulders was dropped back on ten fold. It may seem strange but all I could think of was if I am back at square one & we have no clue what feels like it is killing me from the inside I give up, I cant do this anymore, So quietly & almost tearful I say “ok, well do we know what it is then?” He says Yes scribbles on a piece of paper & hands it to me & says this is what you have go home & google it & you can schedule an appointment with the pulmonologist upstairs, you wont need me anymore. I looked down & saw the word SARCOIDOSIS. What is this? how is it treated? Will I be ok? Why do I need a lung Dr? Will I be able to return to work, I hadn’t worked in almost 6 months! By the time I looked up the Dr was gone & I was left to schedule an appointment for something i know nothing of.
Over the next 6 months I was placed on high dosages of Prednisone & was able to return to work. It was hard though I was still muddling through trying to find my way. I was having “flares” every other week. My PCP sent me back to the rheumatologist that had done the original CT thinking he could help me & coordinate care with the lung dr. I was started on Methotrexate a chemo drug in addition to my prednsione, Dr says the metho will eventually put out the Sarcoid & we can taper off the prednisone. I had such high hopes. Remind you that at this time I was still trying to work full time as a nurse & I was missing a lot of work on & off due to fevers, migraines, nausea & vomiting…”flares”. This was my life for the next year & a half. Have a flare raise the metho dose, start to taper back perdnisone, have a flare raise the metho. We are now at the highest does of metho & I am still on prednisone. I am tired of the back & forth & being sick.
Its now Feb 2011 nothing is changed I am on a roller coaster that I want off but one morning I wake up with such bad throbbing & burning in my legs & hips. A flu bug seemed to be going around so I took some motrin & tried to sleep it off. Finally after a week I made an appointment with my PCP, he did some lab tests & that afternoon I got a call saying I need to call my Rheumatologist & make an appointment immediately & tell them my CPK is elevated. So of course I know this means I am having either inflammation in my skeletal muscles or deterioration of them, I don’t take any meds that could cause this I checked with pharmacy. So I go into my appointment & now all of a sudden this isn’t Sarcoid causing the pain because I have never had these symptoms before. Now I was diagnosed with Fibromyalgia on top of Sarc. Sigh. I try my best over the next 6 months to work & function as well as possible but I am in pain & my Dr doesn’t seem to care. We tried Fibro meds & I still continue to have such severe pain. Now I have been unable to work Since November 2011, I can’t seem to stand or walk for more than 30-45min without my legs feeling like I ran a marathon. I have now lost 100 lbs from the nausea & drs don’t care because I could stand to lose the weight & I have pain nobody seems to know anything about….
This all brings us to December 2011 my PCP decided it was time to find alternative help. He’s trying different meds still so far with no relief. He’s trying to calm my anxiety & now I am fighting some major depression. I am happy to tell you I got accepted at Cleveland Clinics Sarcoidosis Center & have an upcoming appointment in Feb. Even though knowing I will be seen by some the best drs I am still sad & anxious.
It is now Feb of 2013& not much has changed. My specialist at Cleveland are doing the very best they can. Although my body continues to fight all the treatment we try. The disease has now spread to my nerves, skin & kidneys. I have not been able to work in a year & a half, I get infusions every three weeks & take up to 24 pills a day. My life has been torn apart, I am no longer the same person I once was. I can’t function everyday like everyone else & nobody seems to really understand. I don’t mean I don’t have wonderful love & support because I do but this disease has made me feel like I barely exist anymore. This is not just a disease that goes away on its own or some steroid treatment for a few months, this is serious & needs so much more attention then it receives. Thank you for listening to my story even though I don’t know where my path may lead I will fight with as much strength & integrity as I can but in the end all I want is my life back…..