Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Kara's Story'


My name is Kara Collins and I live in Saratoga Springs, NY (United States). I am married with 3 children... a 7 year old boy and twin 4 year old boys. In early 2014, I was diagnosed with C.R.E.S.T. syndrome, aka systemic sclerosis, aka limited scleroderma. I had been working renovating an older home in the cold winter months, keeping the heat down because oil was so expensive (nobody lived there). My toes would get really cold, so I would take them out of my shoes and warm them by the heater throughout the day. I noticed that they looked purple at times, but it was't so bad that I was worried. After a month or so of this, I got a "raw" spot on my toe where it touched my shoe. I put neosporin on it with a bandaid, but it got worse. It hurt to walk in my shoes, so I switched to wearing oversized mens slippers or crocs. I was sick of it hurting, so I went to my primary doctor (who is awesome) hoping he could prescribe a special cream to make it better. Imagine my surprise when he had concerns and said he may have to send me to a wound/burn clinic where they specialize in treating wounds that don't heal. He was smart enough to recognize that I had raynauds and to do blood work for auto-immune diseases. A few days to a week later, I got the call that I had a positive ANA in a centromere pattern. It said right on the sheet from the lab: CREST syndrome! A little toe ulcer changed my life. I had a rare auto-immune disease, a serious one. I realized just how serious when I went to get life insurance shortly after diagnosis...and was told they wouldn't even insure me, for any price, because I had scleroderma. Lucky for me there was a scleroderma specialist (and a really good one) just 10 minutes away!

During the next couple of months, I had all kinds of tests and saw a few more doctors. The tests showed I had reflux before I had symptoms. Symptoms came soon after, but surprisingly, heartburn was not a symptom. I was gagging or coughing for what I thought was no reason. I was having trouble would get stuck so I had to drink to get it down or "cough it up" and try again. I also started to lose my short term memory. I would forget what I was doing a LOT more than before. I told my rheumatologist I thought my immune system was attacking my brain cells! He said, "that's not exactly how it works". I knew that, but it felt like they were being attacked! I also was becoming quite fatigued. I went from working 5-6 days a week and taking care of twin 1 year olds and a 4 year old to not being able to chase the boys around without needing to sit...because I literally had no more "fuel". I will say that I didn't stop working because of the disease, I stopped at the time because the jobs I had lined up were finished. Once I started feeling crappy, I just didn't look for more work. I didn't "need" to do those jobs, so I didn't. Taking care of the boys was even too much. I literally didn't take them anywhere alone because I couldn't chase the twins. Thankfully I have wonderful friends and family. They helped when I needed them. I am so lucky!!

Great doctors and great medications can make all the difference! My awesome rheumatologist explained that people with scleroderma, like me, often have Sjogrens as well (another auto-immune disease). It is important to note that there is a lot of overlap in auto-immune diseases. He said fatigue is more a sjogrens thing and that I should consider going on plaquenil, so I did. I was desperate. Life as I knew it was going down hill FAST. I had no energy to keep up with my kids or do the things I loved, I couldn't focus, I couldn't remember things, I couldn't swallow well, my mouth was always dry, and my toes and fingers were always cold, etc. Fast forward 7-8 months... The plaquenil was finally working!!! My mouth wasn't so dry anymore (dry, but not to the same extreme). I wasn't having as hard of a time swallowing. AND...the best part...I wasn't so fatigued anymore! I could chase my boys! I actually wanted to go places with them!! I was so happy!! It happened slowly, but before I knew it, I was feeling normal again. Plaquenil for me, was life changing...a life saver really. Other meds I started after diagnosis are: amlodepine for raynauds phenomenon, adderall for the fatigue and attention deficit disorder, and nexium for reflux/esophagus involvement.

I have had numerous health issues during my 44 years on this planet. I was diagnosed and treated for hodgkin's lymphoma in 1991 when I was 17. I started getting fibromyalgia pain towards the end of treatment, I assume from the radiation I received to my neck. I still have fibromyalgia flare ups, but thankfully they aren't as often as they once were. That could be because I have adapted and learned what I can and can't do. Knowing your limitations is critical when you have health issues like I do. I think having fibromyalgia (and the other various illnesses) for so long has helped me immensely to deal with the effects of systemic sclerosis. The almost constant effect is raynaud's. I learned quickly to listen to my body. I had to stop wearing most of my shoes, and switched to wearing mostly Uggs or Crocs. Sandals are fine on hot summer days as long as the a/c isn't cranked up and I bought sneakers a size up so I could wear them with my thick socks when it isn't cold out. I also recall the day I realized I couldn't wear "normal" socks anymore either. It was a warmish day, and I had thin socks with a pair of running sneakers on. I was walking around shopping (indoors) with my mom when I couldn't stand my toes feeling cold and numb any longer. I took my socks off and my toes were either white or purple, I don't recall which. I warmed them with my hands for a moment, and left my socks off. To my surprise, they weren't bothering me so much with the socks off. The next time I wore socks and sneakers, my toes again were numb and cold. I took my socks off, and sure enough...BETTER! I figured out that the socks were cutting off circulation just enough to be a problem. Tighter fitting shoes (like my converse) did the same thing. BUMMER! I cared less about fashion and more about comfort. I did NOT want another toe ulcer or chiliblain! I have big feet as it is, a size 10-10.5, so wearing extra big shoes makes my feet look even more enormous. I look kind of ridiculous when I look in a full length mirror, but whatever. I think my uggs and heat holder socks are a medical necessity! My feet were the first to be affected, but a year or two later, my fingers started turning white. They are COLD, almost all the time. What may surprise people is that I do not wear gloves! I tried, but they are uncomfortable because my fingers get numb. So they are numb and cold. That's not good!! Instead I keep them in my pockets or hold hand warmers as much as I can.

Those that survive are the ones that can adapt. That is basically life, right? For every living thing on earth? I feel like that is a big part of what I do... I adapt. For example, I use to get hot easily. I hated being hot. I wore short sleeved shirts year round, and I live in an area that gets plenty of cold weather with snow and ice at least 4 months of the year. I didn't even own a warm coat! My jacket was a very thin "packable" windbreaker type with zero insulation. Then, I developed raynauds phenomenon and HAD to wear a coat...because now I'm always cold. I got a very nice and very warm, yet lightweight, down jacket...with a hood! I love it! AND, I have 10+ winter hats now. I even cut my hair trimmed so it looked better with a hat on! My mom was happy, she had been trying to get me to wear a hat for 30+ years! I have adapted to more things than just the weather. I have a dry mouth and trouble swallowing from auto-immune disease. I don't go anywhere without a drink close by and I definitely don't eat without a beverage! I don't eat peanut butter anymore (unless its mixed into something and not sticky), which sucks. I can't eat "dry" meat, it gets stuck in my throat every time. Ideally my food wood be incapsulated in jello for easy swallowing, but that isn't reasonable, so I ADAPT. I could go on and on, but I think you get the idea.

No matter how many diseases or conditions I have (and there are quite a few), I try not to let them have me. I know that I am lucky. I say it all the time. I have wonderful friends, a wonderful family, good doctors, and I have pretty good medical insurance. I also have a positive outlook, which is crucial!! When I was trying to get pregnant, I read numerous books. They said that the number one thing you can control that will help your chances of getting pregnant, is your stress level!! Stress does terrible things to our bodies! There is a connection between certain pain conditions (like reflex sympathetic dystrophy aka RSD and complex regional pain syndrome aka CRPS) and stress. Raynaud's is also very much effected by stress. When I get stressed or really upset, my fingers and toes will turn white...which means they are not getting circulation/blood flow. Basically, stress does the same thing to my body as a burst of cold air. Our overall health is directly linked to our mental health! So please, do what you can to find happiness and avoid stress!! Hugs to all!

Kara Collins

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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