Sometimes you just have to laugh when trials come upon you. I have lots of funny stories I could tell, but I had to share this. I saw it on a Scleroderma discussion website, where there are also some very helpful discussions that I've found. But this is called, "You Might Be a Scleroderma Patient If..."

You Might Be A Scleroderma Patient if....

• Your skin is tight and shiny on one side of your body, with a crepe, pasty skin texture on the other;
• Wearing lipstick is impossible as you no longer have lips;
• You only have to shave one of your legs due to thick skin and hair loss; (this is not a problem I have. I swear my leg hairs grow 10X faster now that I'm unable to bend over and shave them. I went about 2 months without any form of attempted shaving this last time...not a pretty sight!) 
• Change handed back to you at the store drops thru your hands onto the counter; (Greg knows this, which is why I can't be driving through a fast food drive thru. One time, however, I jokingly stuck my hand out to him for the change, and he dropped it, and like this one says, it went right through onto the car seat. It was really funny. It happens all the time at work too. Why do I think it's a good idea to be a teller?) 
• You have waited in a restroom with a smooth, round handled door, for someone else to come in so you can get out;
• A walk to the mailbox will result in a glorious tan due to hyperpigmentation;
• Sucking thru a straw is impossible;
• A trip to a new medical provider results in a crash course of Scleroderma 101....taught by you;
• You have to select your convenience store based on who has hard plastic soda fountain cups as you are unable to hang on to a paper cup with thin plastic lid;
• All of YOUR drinking items must be handled mugs;
• Sport Bottles....IMPOSSIBLE;
• You wait for company to have them open your pickle jars....ANY jars;
• Check out clerks look at you strange when you politely ask them to break the seal on your soda bottle;
• You smash your donut flat prior to taking a bite;
• and your hamburgers;
• and your Twinkie;
• and every other thing you try to eat 

• Your 5 year old picks up all the dropped M&M's and Popcorn; or in my case my husband...or I just kick them to some unseen place.... 
• It's 98 degrees out and you are sporting a glove....or two;
• You clap and make no sound;
• Your children scream when you apply sunscreen for them as your curled nails accidently gouged them;
• You live for the days you dig out the calcium "stone" from your current finger sore;
• You re-gift the mani/pedi certificates you are given as you cannot STAND to have your digits touched;
• You have patriotic extremities....always Red, White and Blue;
• Going out for dinner has lost it's appeal as you will end up throwing it all back up;
• When asked "How Are You?", you cheerful reply "Fine, Thank you" thinking....You really don't want to know;
• You are unable to pass a field sobriety test; then you are unable to blow as the stick is rigid and too narrow;
• You have 30 pairs of loafers as you can no longer tie your shoes.
• You are told your plastic surgeon did a great job on your facelift...( but you never had a facelift )..
• You have to find a lab, lab technician or doctor who can get blood from your non-existent tiny scarred veins using a butterfly needle.
• When you try to speak on the phone, your breathlessness makes you sound like an obscene phone call!
• People keep telling you how "tan" you look and ask whether you've been in the sun somewhere warm (I wish!)
• People feel sorry for you because your parents "didn't get braces placed on your teeth" (I'm actually a bit concerned about this one....thanks parents! jk...but really I am a bit self-conscious about this one for sure.)
• You can no longer whistle
• You consider having "safety bars" in your bathroom (luckily my house comes with them!)

 Oh geeze...these are so sad...but so true. I laughed when I read them.

I have been so lucky to meet people who suffer with Scleroderma, Raynaud's, and other various Auto-immune diseases through Instagram. Totally random, right? But it's been really cool. One of the gals that I've 'met' is a very talented artist. She created some superhero and princess prints that she is selling to help pay for her medical bills. Her etsy shop can be found here: https://www.etsy.com/shop/kcmcreations and her facebook page here: https://www.facebook.com/kcmcreations?ref=profile

Yesterday she shared a link to a YouTube video that I wanted to share here. Its so hard to know what the future holds for me with this disease, and it's kind of hard for people to really understand what this disease does to people, so this video was awesome to kind of explain what Scleroderma is, and how it has impacted the lives of a few people. I totally cried because of the familiarity, so be prepared. It's a fantastic video. I'm just going to post a link to the video instead of inbed the video here on my blog. It makes the blog hard to load. :)

Scleroderma Foundation | Michigan Chapter
http://youtu.be/mAUoltkn5xM

Kind of neat right?

I had my next appointment with my rheumy on October 22. He just asked me how I was doing. Not really much new to tell him, to be honest. He talked to me about the next step of the process which was the medication that he thought would be best for me to try. He told me he wanted to try me on Cellcept. Cellcept is a an immunosuppressive drug, which basically is going to lower my immune system. To put some of my family at ease with this, here is what the John Hopkins Scleroderma Center says about immunosuppressive therapy,

The most popular approach to controlling the inflammatory phase of scleroderma is the use of immunosuppressive therapy. The rationale is that an autoimmune process is causing the inflammation and the downstream result is tissue damage and fibrosis. In this model, the fibrosis is an “innocent bystander” that is driven by the cytokines (chemical messengers) produced by the immune system. There are several drugs that are being used, but only a few well designed studies have been performed. These immunosuppressing drugs include methotrexate, cyclosporine, antithymocyte globulin, mycophenolate mofetil (aka Cellcept) and cyclophosphamide. A recent study suggested that methotrexate did not significantly alter the skin score (a measure of skin thickening) compared with placebo (no treatment). Cyclosporine is not completely studied due to reports of renal toxicity. The most promising drugs are mycophenolate mofetil or cyclophosphamide with or without antithymocyte globulin. Unfortunately, there is no placebo-controlled study (i.e., half the patients get the medication and half get a sugar pill) to define their exact role in treating scleroderma, but if used during the active inflammatory phase of the disease, they appear to work.

So there. In basic terms, the way I understand it, my immune system is attacking itself, so by weakening it, we're hoping to prevent the progression of the disease. He did tell me that it can take a while for me to notice any difference, at least 6 months. He started me on 1000 mg, 500 in the am and 500 in the pm. Side effects could include upset stomach and vomiting, which I was quite lucky to experience. I actually called in sick that next Friday. It's been a long time since I've thrown up. It wasn't too bad, but still gross.

Anyway, since I know you all wanted to know about that, he continued me on the Amlodipine, Baby Aspirin, and Omeprazole, then sent me off to do some blood tests. The last time he said that my blood tests showed high levels of inflammation in my muscles, so he was going to do more tests for that.

He also asked if I wanted to get a flu shot. I've never had one before, so I asked him if he recommended it. Since I would be taking the immunosuppressor, he said it would be a good idea. As he was leaving he asked if I'd ever had one, I said, "No, but I don't ever really get sick." Then I paused, and we both laughed, and I said, "Well, until now." Needless to say, I got a flu shot.

I had also been having problems swallowing. I have to chew my food really well so that I don't choke on anything. I mentioned this to him, so he scheduled me to have an endoscopy with Dr. Garg. It was scheduled for Monday, the 28th. I was a bit nervous because I had no idea what to expect. It was done early in the morning, I had to have a driver, and I got to stay home all day! WOOT! They had me change into a gown and slippers, gave me some warm blankets, hooked me up to to their monitors, sprayed some numbing spray in my mouth, then gave me an IV. That was the worst part. Then they gave me the anesthesia, and I was out. It was amazing. I haven't slept that well in a long time. Once I woke up (like a half hour later), Dr. Garg came in and told me that everything looked okay, with a bit of inflammation due to acid reflux. He doubled me omeprazole dosage, and sent me on my way.



I'm glad there was nothing seriously wrong, but then I still wonder why I have such issues swallowing, and why my throat hurts....kind of like with the rest of my body. Everything seems to be fine, but it still hurts. Oh well. Such is this wonderful disease I guess. I really can't complain too much. I could have it a lot worse!

Following what has now come to be know as "the Fall", things changed a bit. I no longer wanted to go anywhere alone. Partly because I felt dizzy still, and mostly because I was afraid of failing again, and not having anyone there. So, now I don't shop alone, or really go anywhere alone, except work. I still have to make sure I stay right next to Greg or the shopping cart, just in case I start to go down. I don't get dizzy so much anymore, but I do have a tendency to stumble, and if I turn to fast, I lose my balance. So, I'd rather be safe than sorry.

The next Monday (10.7.13) I had my first test scheduled. It was for an Echocardiogram. I've never had one of those before, and if you haven't either, here is what WebMD says about it,

An echocardiogram (also called an echo) is a type of ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the different parts of your heart. These echoes are turned into moving pictures of your heart that can be seen on a video screen.

Or in simpler terms, an ultrasound of my heart.

Greg had a conference or something that day, so he asked his sister Shaina to go with me. She was sweet enough to pick me up from work, walk me into the hospital, and sit for an hour or so while the echo was going on. I'm grateful for family members who are so willing to help out.

I stripped off my shirt and put on a gown, and the guy doing the test had me lay on my side. Oh my painful. My hips were so incredibly sore by the time we were done. I can't lay on my side for long periods of time anyway, so it was a test in and of itself. Next time I'm taking a pillow to put between my knees. It was also freezing so that didn't help me from shivering both from pain and cold. Lessons learned.

He put that goopy stuff on and got to work. He checked it from the left and right sides, then underneath and above. I was able to watch the screen as he did it. It was quite interesting. I had no idea what he was seeing, but he seemed to know, so I guess that's all that matters. Overall it lasted about an hour. It seemed to take longer because of the hip soreness, but it wasn't really that bad. It was a bit relaxing in someways.

Those tests came back normal, with a slight elevation in blood pressure in one of my arteries (? I think that's they said, lol. It was a while ago.) I just know my heart is good and still beating.

After the echo we went and got the chest X-rays I was supposed to get the previous week. It was quick and painless, and those came back normal as well.

That Wednesday (10.9.13) I had a Pulmonary Function Test. (Just click on that link to learn the technical terms.)

Before that I took a six minute walk. They couldn't get the oximeter to work on my finger (it never does), and had troubles getting the ear one to work. I don't know how the test actually went, to be honest with you. I literally just walked, as fast as I could for six minutes and had to rate how hard I was breathing. All I know is that part alone cost $135.

While I was waiting for my heart rate to get back down to normal, I snapped these.


He's always so good to go with me to my appointments. Thank you hospital for having free wi-fi.

For the PFT you put your mouth really tightly around this mouthpiece, and breathe in when she says breathe in, and out when she says out. There are a few different tests, but that's basically what it is, just repeated. The hardest part for me was getting my mouth around the mouth piece. She kept offering a smaller one, but I was too stubborn to say yes. Next time I'll for sure say yes. My mouth was so sore, and I think it made it a lot harder too. I wish I could remember what she told me about what was going on, but she said things looked okay, but that it did look like air was getting trapped. It was a fun experience.


Other than the slight air trappage, everything else seemed to be okay, but they wanted me to do a CT scan to make sure. I went in on the 16th and had that done. That, too was a new experience for me. Good thing I'm not claustrophobic or anything! JK, it really wasn't that bad. They had me raise my arms above my face while breathing in and out when told to as they took me in and out of the machine. Plus, I got a warm blanket. It was awesome.

Picking up a prescription. Dr. Walker said I was iron deficient, so he had me start taking an iron supplement as well, and then we headed up to Star Valley for a fun, relaxing fall break. Crazy it's been almost 4 months since then. So crazy.

Here is a picture I took of my swollen ankles. One of the side affects of the amlodipine is swelling. They got massive, so I was told to cut them in half. (The pills, not my ankles.)


Like I said, though, this was a month of new things for me. I'm grateful for the technology we have no days that can check things inside our bodies. I'm also EXTREMELY blessed that the scleroderma has not yet hit my lungs. I hear stories about people whose lungs are affected, and my heart just breaks for them. I have a hard time coughing as it is, so to have coughing fits would just be so hard. Keep praying that my insides will be strong enough to fight this blasted disease!

The day after my appointment with my rheumatologist, I was supposed to go back to the hospital and get a chest X-ray. They weren't there when I went down to get my blood drawn, so I just figured I'd go after work the next day since I needed to pick up my new meds as well.

As I was leaving work, everything felt normal, so I did what I do everyday and went to walk across the parking lot to get in my car. I have no idea what happened next to cause this, but as soon as I stepped off the curb I got this weird sensation and just knew I was going to fall. I took a couple of steps and was going down. Because my reflexes aren't what they used to be, I had no way of stopping myself or adjusting to protect myself, so down I went. I fell on my left side and smacked my head on the pavement. It hurt like crazy, but the thing that scared me most was not knowing how I was going to get up. I haven't been able to get on the ground voluntarily in a very long time, so I knew that whatever happened next was going to be rough. As I lay there, somewhat curled up in the fetal position, crying a bit, I had a few thoughts. First, "I really hope no one comes flying around to park and runs me over," and second, "Who should I call? Greg? Someone at work? Who?" I'm glad I had my phone, but as I lay there for what seemed like a very long time, I just prayed that someone would come out that could help me (and also that I wouldn't get run over!)

Luckily a college kid had been driving into the parking lot and saw the whole thing. He got out of his car and immediately came over to see if I were okay. I had him help me up to a sitting position where he checked to make sure my head wasn't bleeding. The only part of me that had any major damage were my fingers. Broken fingernails, and my middle finger on my right hand was cut up and bleeding. He got me a bandaid to cover that up, then I asked him to help me up. It's hard to explain to people I don't know why I can't get up by myself, and why they're going to practically have to lift me up, but luckily he didn't ask.

I had him take me into the credit union where I was hoping to be able to sit down without drawing too much attention while I figured out what to do next. Unfortunately, my boss saw me and came over, then the assistant manager, and one of my co-workers. They all came over and asked what happened, to which I responded, "I have no idea. I just fell." They got me an icepack for my head and then my boss offered to drive me over to pick up Greg. On the way he said, "It's probably a little early for jokes, huh?" to which I responded, "It doesn't matter. Greg will make fun of me as soon as he gets in the car anyway." Which was pretty much true.

I had a massive headache and was a bit dizzy, but mostly embarrassed. Stuff like this doesn't and shouldn't happen to me. I was so frustrated that it did happen. It just kind of proved that I'm not able to do some of the basic things (like walk by myself!) that I used to be able to do. I'd always had a fear of falling, but had been lucky until that point, so I guess that is a blessing that it hasn't happened more. But it is still a bit discouraging and frustrating.

I went home and slept, and slept, and slept. I still felt really dizzy, and could no longer sit myself up in bed. One time during the night I asked Greg to help me up and it felt like the entire bed shifted. Scared me a bit. My eyesight was a bit blurry too, so luckily I had just gotten new glasses so I didn't have to try to put in my contacts.

My boss told me if I needed to take some time off, I could. The fall happened on Tuesday, so I knew I would for sure miss Wednesday. I slept in, and it was much needed, though I was still super dizzy in the morning. Like I said, I could no longer sit myself up, so I had to basically roll out of bed, and still do. At least it's easier.

This is the massive goose egg that was the result of the fall. I also had a bruised shoulder and a sore hip. Not to mention the finger damage which actually turned out to be the worst part.

So I stayed home Wednesday, and my sweet husband made me a root beer float to help with the headache.

I watched SOAP network all day, and avoided standing up as much as possible. Part of the problem too was that I started my new medications, and some side effects were light-headedness or dizziness, so I never could quite figure out if it was from the fall or from me medicine.

Around 1:30 I heard a knock at the door. Luckily I had pants and a robe on. I was surprised to see one of my co-workers at the door with some flowers and a balloon. It was really neat because this lady is one that I had been having a few issues with over the past few years. We have our good times and we have our bad times. She is a sweet lady and I really appreciated her thoughtfulness. She also offered to come pick me up for work, which actually turned out to be a great blessing.



Thursday I still felt a bit dizzy, so I stayed home again. Friday I thought I was doing better so I got up and showered to go to work. When I put my contacts in I got super dizzy. So I decided to take another day off. I felt really guilty the entire time, but there was no way I'd be able to work being that dizzy.


I was able to go back to work the next Monday, but I was still super nervous. The dizziness was still there and lasted for quite a while. But like I said, I didn't know if it was from the fall or from the meds. I've gotten over the massive dizziness and only get dizzy occasionally, so that's good, however I still have to be extremely careful how and where I step, and I'm still nervous I'll fall. It kind of sucks.

By now, you're probably wondering just what exactly is Scleroderma. Well, in simple terms (and in a cute typo-graphic)

So, basically, my body has decided that it doesn't like the healthy body tissues in my body, and tries to get rid of them. So much for trying to get in shape and be healthy right? In more in depth terms, this is what eMedTV says about it:

Scleroderma is derived from the Greek words "sklerosis," meaning hardness, and "derma," meaning skin. Therefore, it literally means "hard skin." Although it is often referred to as a single disease, it is really a symptom of a group of diseases. This group involves the abnormal growth of connective tissue, which supports the skin and internal organs. Therefore, scleroderma is sometimes used as an umbrella term for these disorders.

In some forms of scleroderma, hard, tight skin is the extent of this abnormal process. However, in other forms, the problem goes much deeper, affecting blood vessels and internal organs, such as the heart, lungs, and kidneys.

Scleroderma is considered a rheumatic disease and a connective tissue disease. A rheumatic disease refers to a group of conditions characterized by inflammation and/or pain in the muscles, joints, or fibrous tissue. A connective tissue disease is one that affects the major substances in the skin, tendons, and bones.

Here is a list of symptoms of scleroderma with the ones I've experienced in bold.

Skin symptoms of scleroderma may include:

• Fingers or toes that turn blue or white in response to hot and cold temperatures (Raynaud's phenomenon)
• Hair loss
• Skin hardness and thickening
• Skin that is darker or lighter than normal
• Stiffness, and tightness skin of fingers, hands, and forearm
• Small white lumps beneath the skin that sometimes ooze a white substance that looks like toothpaste
• Sores (ulcers) on the fingertips or toes
• Tight and mask-like skin on the face

Bone and muscle symptoms may include:

• Joint pain
• Numbness and pain in the feet
• Pain, stiffness, and swelling of fingers and joints
• Wrist pain

Breathing problems may result from scarring in the lungs and can include:

• Dry cough
• Shortness of breath
• Wheezing

Digestive tract problems may include:

• Bloating after meals
• Constipation
• Diarrhea
• Difficulty swallowing
• Esophageal reflux or heartburn
• Problems controlling stools

Awesome right? Okay, so it's broken into two main forms of Scleroderma, {localized} & {systemic}. Here's the difference between the two. (click on image to see it bigger).


Got that? So naturally I have the worse of the two. Systemic. A lot of the symptoms for both are the same, however systemic covers more of the body. Some of those wonderful symptoms are known as CREST.

• Calcinosis. The formation of calcium deposits in the connective tissues, which can be detected by an x-ray. They are typically found on the fingers, hands, face, and trunk and on the skin above the elbows and knees. Painful ulcers may appear if the deposits break through the skin.

• Raynaud's phenomenon. A condition in which the small blood vessels of the hands and/or feet contract in response to cold or anxiety. As the vessels contract, the hands or feet turn white and cold, then blue. As blood flow returns, they become red. Fingertip tissues may suffer damage, leading to ulcers, scars, or gangrene.

• Esophageal dysfunction. Impaired function of the esophagus (the tube connecting the throat and the stomach) that occurs when the smooth muscles in the esophagus lose normal movement. In the upper esophagus, the result can be swallowing difficulties; in the lower esophagus, the problem can cause chronic heartburn or inflammation.

• Sclerodactyly. Thick and tight skin on the fingers, resulting from deposits of excess collagen within skin layers. This condition makes it harder to bend or straighten the fingers, and may also cause skin to appear shiny and darkened, with hair loss.

• Telangiectasias. Small red spots on the hands and face that are caused by the swelling of tiny blood vessels. While these spots are not painful, they can create cosmetic problems.

  The main ones I suffer from are the Raynaud's, Esophageal dysfunction, and sclerodactyly. Love it!

Now, as mentioned above, Systemic scleroderma is broken down into Limited or Diffuse.

Whereas Diffuse is a bit more complicated.
Guess which one I've got. (And no cheating, since I told you in my last post.) But yes, I've got Diffuse Systemic Scleroderma, due to it affecting so much of my body, as well as having all of those awesome symptoms listed.

The damage caused by diffuse scleroderma typically occurs over a few years. After the first three to five years, people with diffuse scleroderma often enter a stable phase lasting for varying lengths of time. During this phase, skin thickness and appearance stay about the same and damage to internal organs progresses little, if at all. Symptoms of scleroderma also subside, which means that joint pain eases, fatigue lessens, and appetite returns.

The skin will gradually begin to change. Less collagen will be made, and the body will get rid of excess collagen. This process, called "softening," tends to occur in reverse order of the thickening process: the last areas thickened are the first to begin softening. For some people, skin returns to normal, while other people are left with thin, fragile skin without hair or sweat glands. More serious damage to the heart, lungs, or kidneys is unlikely to occur, unless previous damage leads to more advanced deterioration.

People with diffuse scleroderma face the most serious long-term outlook if they develop severe kidney, lung, digestive, or heart problems. Fortunately, less than one-third of patients with diffuse scleroderma develop these problems. Early diagnosis and continual and careful monitoring are important factors in this.

So, I guess there is hope that maybe this disease with become stable. It progressed really rapidly from about June-September, and since being on the medication, it has slowed down. Because of the kind I have, they have to monitor my internal organs pretty regularly to make sure nothing goes wrong there.

There is not a known cause for what brings this disease on. Scientists suspect that it comes from several factors, which may include: