Journey to a diagnosis

My first blog post!

Since it’s the beginning of and first post on my blog, let’s start at the beginning. My symptoms, diagnosis and what led to it. Arguably one of the most difficult periods any scleroderma patient will go through. Each person has different symptoms, doctors don’t know what’s going on with you. Your friends and family see the changes but no one seems to be able to help. It’s a pretty standard story from those with scleroderma and I’m no exception.

My first symptoms appeared around the age of 16/17. Depending on who you ask my first symptoms were Raynauds phenomena and collagen deposits/ulcers on the tips of my fingers, that’s my opinion. If you ask my mother she says it was fatigue. I agree to an extent but hindsight being what it is I know I was a lazy bugger at that point in my life.


I didn’t really care about those symptoms. The ulcers at that point weren’t large or painful unless the deposit came out leaving the ulcer exposed. I didn’t know they were ulcers. I was working as a dishwasher  (shut up! How glamorous was your first job?!) and used steel wool almost constantly during my shifts. I thought they were callouses.  Raynauds? I just thought I was a bit more succecptible to the cold then my friends but that was about it. I grew up in Saskatchewan where -20 to -40 is common. Winter is cold. I figured I was just colder than most in my hands. Hey I was a dumb punk teenager what can I say? You’re indestructible at that age.

It wasn’t until the age of 21 that major symptoms occurred. You guessed it, GI issues! This was where my nightmare began. At this point in my life I was not one who got sick. I have an early childhood memory of throwing up when I was sick. That was it, outside of stupid self induced causes such as alcohol or getting all gluttonous, for my getting sick to my stomach. I got a cold every 2/3 years and that was about it. Still to this day most of my health issues are either related to scleroderma or the medications I take.

Now the next part is a bit hazy as to what occurred when as this was the start of my health decline and I was self medicating with both alcohol and drugs. I have 2 very vivid memories and i’m not sure which occurred first. I think my first major attack occurred when i was out for a couple of beers with friends. To be clear, it was a couple of beers. We weren’t out to get drunk. I managed to get through a beer and a half when my stomach did a backflip and I made a run for the front door of the pub I was in. The bathroom was to far and I knew it. After vomiting I got my friends, one of whom was my roommate at the time, to take me home. My friends decided to hang out with my roommate and after about 5 or 6 hours of me non stop vomiting they decided to take me to the hospital. To this day that first trip stands out to me and does nothing but get me angry and make me realize the value of a good doctor who takes what you say seriously.

I went into the ER on a dead night. There were 2 people in the waiting room and the ER itself was very quiet. Now before going any further I should be honest and admit that at the time I was a rather troubled person. I liked to party. I was a part of the grunge generation and proud of it. I had long hair (I still do but the reasons why have changed), I was tattooed, I stand 6’3, I dressed like a scuzz ball and damnit I was proud of it. To this day I still say………so fucking what!?!? My appearance has nothing to do with the treatment I should receive. This wasn’t the case for my first visit. My friends were still with me and I know they were livid at the time. Now I’ve said I was kind of a rough looking guy. That’s it. I looked rough. I was always nice to those around me and really didn’t care about appearances. I was always respectful, for the most part. I have no criminal record yada yada yada. “Shut up that tattoo hurt more” that’s what was said to me by the first nurse to come into the room. I’m not rewriting for dramatic flare. Those were quite literally her first words to me. Mine were “no this tattoo fucking tickled compared to the pain i’m in” Guess what? That visit resulted with a finger in my ass and me being written off as a drunk. Remember it was beer that triggered it and if you’ve ever thrown up beer you know its not a smell that comes off quickly. I was also honest and had told the ER that I had been drinking but again was honest and said it was no more then 2 beer, maybe 4 if you thought of them as bottled beers, we were drinking schooners.

From then on I started losing weight, I would occasionally get violently ill and end up in the ER. No one knew what was going on. With prodding from my mother I set about trying to find out what was wrong with me. My mom had noticed the ulcers and raynauds and at that point telangiectasia had started showing quite severely on my hands and started showing on my face. My trips to the ER had disheartened me. I was used to being treated more like an addict then someone with a health problem. It was taxing. It took a lot out of me and left me feeling hopeless. So mom kicked me in the ass with some vital words along the lines of “shut up, get over it, get off your ass and go find a doctor and find out whats wrong. Tell them about everything. They might be connected”. They might be connected. It had never occurred to me that there me be an underlying problem connecting all my symptoms. How could my hands effect my stomach? What did the blotches on my hands have to do with my white fingers in the cold?

I was kind of lucky from here on out. I went to a clinic. Explained I had been sick and was losing weight and I didn’t know why. I showed my hands. The doctor actually took the time to listen to me. It may have been the fact I was on the verge of tears and at my wits end but he listened. He admitted to not knowing what was wrong with me but also thought there might be a connection with all my symptoms. I was referred to a dermatologist. It was the usual almost 6 month wait to get in. my first visit I went over everything again and the dermatologist said she had no idea either but asked if she could take a biopsy of one of my smaller ulcers. I said sure. 2 weeks later I was in the office being told I have scleroderma and was being referred to a rheumatologist and wouldn’t be going back to the dermatologist.

So there I was. 21 years old being told I have a disease I’ve never heard of. I had 6 months to go before I would see the rheumatologist and due to my ER visits was also waiting for an appointment with a GI specialist. I wasn’t told anything more by the dermatologist. I had no idea what this disease was. So I went home and made that oh so painful mistake most of us patients with scleroderma have made. I googled it.

Well shit! My heart sank, my world spun. This was my future? To this day I still regret doing that first google search. This put me into a bit of a depression. Not a suicidal I don’t want to live like this depression but a coming to terms with my situation, how might my life change kind of depression. That did not help my GI issues, which were still unresolved outside of the diagnosis. I remember the trip to the ER that got my original referral with a good GI. I had been sick for a week. Almost non stop vomiting the entire time. I had barely slept as I was throwing up so much I couldn’t sleep. I couldn’t keep ANYTHING down. A sip of water was out within 5 minutes. I was living alone but did have one of my best friends and his girlfriend living in the same building. I still credit my friend with probably saving my life, though he’s probably not aware of it. He had noticed my bathroom light on everytime he left for work at an ungodly early hour. He knew me well enough to know that my lights on at that time wasn’t unusual. I liked to party. My lights on at that time for a week? Something was wrong. He came and pounded on my door after I let his phonecall go to the answering machine……remember those? He took one look at me and said you’re going to the hospital. He told me to call my mom and go or he was going to drag my ass there himself either voluntarily or hed knock me out and take me. It’s a nice story to look back on because he would have. It still makes me smile to think about him knocking me out and trying to get me in a car.

I had lost a lot of weight. My mother took me to the ER. I had no wait. None. They took one look at me, got me a wheelchair and took me straight in. I was 110 pounds. It came to light during that trip that I had been waiting about 18 months to get in with a GI. Everytime my appointment approached I got a phone call pushing it back another 6 months. Well this trip they realized something was wrong. I wasn’t a dumb drunk punk looking for attention. I was sick. I had a GI at my bedside within a few hours, I think. I had been given Demerol so I was kinda hazy. I got scoped from both ends, was diagnosed with an ulcerated esophagus at….forgive me here I’m blanking on the correct term, there are 4 levels of severity I was at level 3 borderline 4, and a distended bowel. I was told that I was blocked up and was most likely poisoning myself due to that blockage. It was a bit more technical then that but that was it in a nutshell. I was told I’d be given an enema in the morning (it was early evening at this point) and if it didn’t help they would have to operate and remove a part of my bowel. What the hell? No way!! I asked for the enema right then. I wanted to know if I was going under the knife. Thank god the enema worked. What a glorious poop! For years I had heard comedians joke about getting older and that a good poop is as good as an orgasm or better. I had always laughed. Turns out they were right. It was a natural high I didn’t think I would ever feel given how sick I had been.

That GI was so disgusted by my treatment that I was immediately made his patient and started seeing him immediately. Prevacid was prescribed. I was placed on a modified high fibre diet. Told what could aggravate me internally and I was on my way to getting better, or as much as a person with scleroderma can get better. It doesn’t sound like a lot but those simple changes took me from being sick once a month for 3-10 days at a time to where I am now. One of those attacks a year, usually 24-48hrs. They still aren’t sure what causes me to vomit so hard and for so long but my current GI and rheumatologist seem to think I develop numerous blockages in my intestinal tract and it’s either the backup or the release of those blockages that cause it. In a nutshell it comes down to motility issues.

I can’t emphasize enough how important a good doctor is. Don’t be afraid to shop for a new one if yours isn’t meeting your expectations. I hate to say this but doctors don’t like to admit that they don’t know. To those doctors. We can tell when you don’t know. We’re not stupid, don’t treat as such. I would rather a doctor say they don’t know then bullshit me. There is nowhere this is more apparent than an urgent care clinic. Anytime I have to go to one of these I dread it. I have to explain more to the doctor then I would like because they refuse to admit they don’t know and will word their questions to me in a way they think is less apparent. Why do I think I have an infected ulcer? Well you see this twisted and deformed finger? Its that way because ihad an infection for over a year that went undiagnosed. The same thing is happening with this finger. Now prescribe the antibiotics and let me get the hell out of here before I catch something from the people coughing and hacking in the waiting room.

So that’s my story of being diagnosed. Very similar to other patients stories with scleroderma sadly. Hopefully in time the diagnosing of scleroderma will be a quick test like so many other diseases. Hopefully doctors will be more aware of the disease in general, which will allow for even quicker diagnoses or treatment. To this day I praise that one doctor at the clinic who took the time to listen to me. He changed my life and if it hadn’t been for him I honestly wouldn’t be surprised if I had died at some point in the near future.

One more thing I’ll mention about that final trip where I got a good GI. I only mention it as for me it was a critical moment in coming to terms with scleroderma. When I was admitted, the GI ward was full. I was placed in the cancer ward. This did me a world of good mentally. After speaking with numerous patients I realized. It could be worse. It’s not really a nice thought but it’s a true thought and one that keeps me going to this day. How could I justify my depression, my hopelessness or any feeling similar to that when the person I’m talking to right now might not be here tomorrow. I will be. Lead with that. It could always be worse. Look for the good. What can I do today not I can’t do that today.