If there is one true thing about scleroderma, it is that it never stays the same. I think of it like the weather or road conditions; as soon as you think you’ve figured out what to wear or the best route to drive to work, things change. If you are dealing with scleroderma in your life, you just learn to roll with the punches. One day you feel fine, and the next one you have brain fog, your knees won’t bend, and gastritis has come to call. One night my hair just started falling out and strands began snowing down onto my shoulders and arms. I didn’t know if I should laugh or cry…
Ugh. This is scleroderma. Bad days come and go, plans shift, and life goes on.
Here’s the deal: I’m doing much better! I’m having a lot of good days!! After months of struggling my doctors and I realized that I needed to go off some of my meds because I was getting much better! My lung volume has increased, my heart is looking normal, and my blood pressure is down. Bam! Time to start getting some exercise, don’t you think? I bought a Fitbit and slowly began to increase my daily steps until I could do 5,000 steps every day. Then I began to increase my active minutes and now, at the end of July, I am logging 3 days of exercise a week. This is huge, huge, huge!! Yay, Fitbit!!
If you slogged through any of my June posts (Science and the Scleroderma Girl) you know that I maintain a log of my symptoms, diet, and other data that occurs to me. (Yep. Weather fronts do make it harder for me to breathe. Who would have suspected that! Thank you log book!) This month I added bananas to my diet to see if they would help reduce muscle pain. I think they’re helping, and getting exercise probably helps too. Yay, bananas!
When I bought this oil on Amazon I noticed in the comments by other customers that they used it on their scalps to help hair grow. Who knew? Maybe that is a thing, I thought. I checked in the scleroderma online forums and decided to oil my scalp once a week. Now, at the end of July, I am happy to report that my hair seems to be growing back. Yay, castor oil!!
Today was the last day of July. It was a pretty good month for me and my scleroderma. There were some definite bumps during the month, but over all the patient scientist approach to managing my trio of autoimmune diseases is paying off for me. Exercise, bananas, and castor oil were big positives for the month. The negatives were discovering that I can’t have any sunshine on my skin, and I absolutely can’t cut down on the stomach acid reducer med. Oh, well, even negative results are good to know.
Yesterday I bought a new data notebook. I have some ideas about some new stuff to experiment with…
Today is World Scleroderma Day. Gosh, there should be a huge post today that pulls together my whole monthly effort… nope. That sounds just exhausting, doesn’t it. How about we just head out to my garden to see what’s up. After that I can show you the big picture on what I’ve been doing all month in “Science and the Scleroderma Girl”.
Getting into the garden has been difficult for me since the sun and I are not friends. Last week I went out for a couple of hours to weed in the morning in the shade, and yep… I developed a rash on my arms and then the flare arrived. I was holed up for days getting over that little misadventure. After I recovered I tried out weeding after dark. Gosh, I’ve had more fun moping floors. It just isn’t the same if you can’t actual see what you are doing. I wonder why that is?
There are leggings too to provide complete sunblock for the surf enthusiast, but that probably is more than I need to tend to the roses. I usually get wet while I’m watering in the evenings, and once again this baby should handle it fine. I am so set up for the rest of the summer!
Let’s see what is still alive in the garden after a week of amazing, blistering heat. Yesterday it was 105°F; these plants are no longer happy.
This weekend will be cooler, and I gave all the plants a good watering this evening so that they will recover over the next few days. Poor plants. Life has been tough for the last couple of weeks: heavy rain for a week followed by triple digit temperatures and blazing sunlight.
Now that we are leaving the garden here is my Scleroderma Month of June:
Once you feel like you understand the design of experiments it is time to hunt for answers to your own questions in published research studies. I explained how to do this and shared some of my favorite links in this post.
The reason I talked about research and the tools you need to look at what is published out there is because I had to make more hard choices about my own treatment. Having more information helped me with these decisions.
Closing down the show was AP Therapy and leaky gut. I’ve been informed that there wasn’t enough venom here for a rant, but I did try.
What I didn’t put into this was a lot of actual information about what scleroderma is. Oops. This post that I wrote for Rare Disease Day should cover that glaring omission.
So, this is World Scleroderma Day. All over the world people have posted the pictures of their smiles in an effort to make an invisible, but pretty darn serious, disease have a face. My smiling face is above: a little crooked these days, my lips have gotten too thick to smile right, and my hair is falling out, but I am doing well. Every day brings a new challenge, but still, with good luck, humor and a touch of science, I rise.
It is really annoying to have an illness that just keeps going on and on and on… think of the energizer bunny here. A really annoying scleroderma energizer bunny. I am so over it already. I love my doctors, but they are really focused on slowing down the progression of my bad boy illness, systemic sclerosis, and are kind of dismissive of the pain and dizziness that is coming my way courtesy of the fibromyalgia and Sjogren’s Syndrome.
It isn’t that they don’t care. They just have clearly defined priorities in mind as they treat me. It is kind of like when my mom was going through chemo for her cancer. The doctors were very sympathetic about her struggles with nausea and fatigue, and helped her the best they could, but they did not let up on the chemo schedule. My doctors are also sympathetic, but they still took my immunosuppressant dose up as high as they could when I got into trouble with my lungs two years ago. Oh, you are having trouble sleeping? So sorry. Hang in there. It will get better…
I had a surge of rebellion about the same time that this was going on and decided that I would consider myself a walking experiment of one and would try to get a better handle of my symptoms; surely there must be correlations between what I was doing in my day and how I felt. If I understood my test results better perhaps I could have better conversations with my doctors. Stop being a victim, I told myself, and become a patient scientist!
The food log was perhaps the most important thing that I did. I began to figure out lots of things by focusing on what I was eating and what my symptoms were. I ignored the “universal truths” that I was being told to me by other people and focused on what was happening with me. Bam! Some of the things that I figured out actually changed the diagnosis list on my chart, and I certainly improved the quality of my life. Here is the short list of what I discovered about myself: absolutely NO SALT or other forms of sodium, gluten is fine, fiber is a problem, lactose free dairy with live cultures is a daily must, bananas are boss, and I should eat foods with a low glycemic index. Oh yeah: vitamin D and krill oil supplements are good, but tart cherry supplements will damage my kidneys. Good to know.
What happened when I changed my diet? Muscles pain went way down, I got more energy, my gastritis and other GI symptoms improved greatly, I slept better, and the quality of my life improved. For each of those food choices I used myself as an experimental animal. Just one change was made in my diet, and then I tracked symptoms for a week or two to see what happened. My latest experiment has involved bananas; a banana a day keeps my muscle pain way down. Who knew? Have a headache? Eat raisins!
I began to gather other types of data. I took my blood pressure during times when I was feeling poorly to see what it was doing. That’s how I figured out that my inhaler was making my blood pressure drop. Now that I’m off my blood pressure medicine, my pressure is back up, and I’m using my inhaler safely every day. Today I noticed that I was a little short of breath while doing laundry…
Now that I’m using the inhaler daily my energy level is up in my little notebook. Hmm… I’m not sure if this is completely due to the inhaler as I also added bananas to my diet, but as I keep logging observations I may figure it out.
I also have started collecting all the data that I can get from my routine heart and lung testing. I usually get a phone call from the doctor that tells me how I’m doing, but with the data in hand I can have more meaningful conversations with my doctors.
The data that I have circled in the upper table of data shows that my lung volume didn’t change very much when administered a dose of albuterol during my first pulmonary function test, which was done right after I was diagnosed. Two years later, when I was really struggling with shortness of breath, the data in the lower table showed that I improved 16% in my lung volume after that same drug. The technician told me that this was a big response and that he was sure I would be prescribed a drug to help me; that didn’t happen until I made an appointment with my internist weeks later, told her about my response on the drug, and showed her the specific data that I had picked up from the hospital where the test was done. Bam!! I got the inhaler that day.
By collecting data at home and paying attention to my symptoms I’ve been able to give better information to my doctors who have responded with changes in my drug protocol and treatment focus. Today all of my doctors shoot me a full copy of all of my testing data as soon as they get it. I also can access data through the patient portal at Kaiser. I follow changes in data over time, and then I can have a meaningful discussion with my physicians when I see them.
I’m just one data point out of all of the patients that my doctors treat, but by using myself as a walking experiment of one I’ve been able to figure out management strategies to help myself and how to better communicate with my medical team to work with them as a collaborative partner.
This is good. I will never be in control of my illnesses, but I sure am poking them with the pitchfork.
Err… knitting needles. They have definitely been poked.