Tina S’ Journey

My name is Tina S. and I am 44 years old. I was diagnosed initially with Polymyositis on my 36th birthday. I remember the week prior telling co-workers that I literally felt like I had been run over by a bus. Being completely healthy up to this point, and never having to go to the doctor, I didn’t see my PCP until the 6th day of feeling like this. My doctor, after explaining my symptoms, suggests that I may be suffering from depression (I’ve never been depressed in my life) and prescribes an anti-depressant, luckily he also ordered a plethora of blood tests which I had drawn before I left. I received a phone call five hours later instructing me to go straight to the emergency room of the nearest hospital, they didn’t really explain why, they were just adamant about going ASAP. At this point I can barely get off the couch, and feel like I’m walking through water when I finally do. So I call my Mom to bring me.

When I arrive at the hospital I am rushed through triage and immediately admitted. This is when I learn that I was hours away from kidney failure. The urine sample they take is akin to the color of root beer, and my Mom asks “How did you not know your urine was that color?” my reply was, “Well, I don’t know about you but I pee in a bowl full of water.” My muscles were excreting a protein into my bloodstream at such a rate that my kidneys couldn’t keep up and couldn’t flush it out. At this point ER doctors only knew what was happening to me but not why. I had two different doctors continuously ask me if I had been crushed recently. Even after saying no they asked several more times, like I wouldn’t remember something like that! It wasn’t until 8 hours later; when the shift changed, and a new doctor looked at me, asked “Are you wearing eye makeup or are your eyelids always purple?” and my reply was, “I wear eye makeup to hide my purple eyelids!” did someone finally say “I think I know what’s wrong with you!”.

I spent a week in the hospital; it was the worst week ever. I had to be on constant IV fluids and I declined a catheter so it was many trips to the bathroom with every muscle on fire and incredible weakness. The doctors said with the level of creatine in my system it was akin to running two marathons’ back to back, aka, being run over by a bus. My first “roommate” was a very elderly woman whose sister would come to visit; they would sit directly in front of the bathroom. I had to navigate around them with my IV pole and terrible weakness, and they didn’t move very quickly either, this was every half hour. Luckily she wasn’t there long.

I was put on high doses of prednisone, 90mgs a day, and I ate everything that was put in front of me, it didn’t matter that it was hospital food. I didn’t have to worry about gaining weight, in just three days of being in the hospital I had lost weight and was down to 110lbs. This was when I meet my present Rheumatologist; I was diagnosed with Polymyositis and so was “assigned” the Rheumatologist within the hospital’s network. He wanted me to have a muscle biopsy to determine if there was any fiber necrosis, degeneration and inflammation. It was a very long 4 weeks to receive the results. It showed that there was all three. Yet, after speaking with me more in regards to my history, i.e. Reynaud’s and IBS since I had been sixteen, and my Mom being diagnosed with Multiple Sclerosis at the age of 36 (same age I was at the time of diagnosis) he decided to run more tests. I have been officially diagnosed with MCTD but the diagnosis changes on every encounter form with my Rheumatologist; it depends on the symptoms I was presenting with during that particular appointment. I’ve seen Dermamyositis, Dermatitis, Inflammatory Arthritis, SLE, Sjogren’s, MCTD, and Polymyositis. I can thankfully say that besides the initial diagnosis, and maybe 6 months thereafter, I never had any symptom of Polymyositis again. For that I am thankful everyday.

I remember being discharged from the hospital, with major pain meds, major pain, the inability to climb stairs or lift my arms above my head, my boyfriend at the time brought me home (we didn’t live together), stayed ten minutes and then left telling me he had promised his friend he would stop over. I had to sleep on the couch in my clothes (thank god there was a bathroom on that floor) because my kids were still with my mother and I couldn’t get up the stairs. This was when I realized that I was going to get no sympathy, no empathy, no support from anyone close to me, and that I had to learn to deal with every aspect of this disease…physically and emotionally…alone. Luckily I am a research junkie, knowledge addict, and I’ve learned a lot about this disease…but more importantly a lot about myself. I would say, after almost 9 years with this disease, that I no longer remember what “normal” is, but I can’t say that, as this/now is my normal. Do I remember when I could go to the beach without sunscreen, without a hat, without a cover-up, stay there all day without having to find shade? Maybe, but who cares. Now I can’t. Do I remember when people didn’t ask me if I were having an allergic reaction, or get too much sun because of the rash on my face, chest, arms and back? Who cares, I almost always have a rash now. Do I remember when I could swallow and never feel like something was stuck or slow to go down? Hardly. How about when my hands weren’t swollen and the joints didn’t hurt? When my IBS and gastritis symptoms didn’t ever interrupt my life? When I wasn’t always dizzy upon standing, laying down, bending over and almost falling down my stairs in the middle of the night because I can’t walk straight? Well, it’s only been a year with those symptoms so yes, I can remember that, but soon the dizziness will be yet another “norm”.  I had a two year remission five years ago, I used to wish I had never had those two years symptom and medication free, that it teased me…but now those years mean something else to me, they stand for hope. The hope that it will happen again, the hope for a cure, the hope if nothing else, that I will have the ability to have a rich, full life despite some pain and inconveniences.

I am strong, I am knowledgeable, and I take charge of my life, and therefore this disease as well. I can deal with a good amount of pain and go on as normal (I tell myself I am not going to die, so I tell the pain “You will not win!”). The way I see it you either do something while in pain, or do nothing and still be in pain. I want no regrets in the end and there is so much I want to experience before then. Just as I would fight for my life in any situation, I fight now, and I fight hard, for there is only now. There are no second chances, no life without this disease, so I choose to embrace it, it is I and I am it. I am grateful for every sunrise and sunset that I am able to photograph (an obsession, I mean hobby of mine). And with every photograph I take, I come to terms with the fact that there will be a day when the sun will rise and the sun will set, and I won’t be there to document the occasion. So every photo I take of the sunset is a celebration, a celebration of being here one more day, another day to enjoy my family, my work, and another day to learn about our fascinating world. If you find something that gives you hope, purpose, a sense of well being it will do you well in this fight. If you need a reason to fight, I’ll give you a reason…YOU. You are worth the fight, your life is worth fighting for, because you know what? No one else will.

Here’s to hoping and fighting, may we all be winners!