Science and the Scleroderma Girl: The Patient Scientist

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…

Cat and computer.
Do you see how much help MacKenzie is giving me while writing this? He too is sympathetic. Oh, your legs are hurting today? Here, I’ll sleep on top of them for you…

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!

Food log.
Today’s entry into my little symptom journal. I started out tracking my daily food intake, and then added in entries about other symptoms.

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…

Oxygen monitor
Oh. That blood oxygen level is a little two low. It was in the high 80s when I first checked, and was up to 91% by the time I snapped the picture.
Oxygen monitor
Well look at that! This is what happened a couple of minutes later after using the inhaler. My oxygen level is up to 95% and my heart rate has dropped back down. I really need to use this inhaler every day as it is helping keep my small airway disease under control.

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.

PFT results.
This is some data from pulmonary function tests that were done 2 years apart.

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.

It is good to be a science geek.

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Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled cats.

10 thoughts on “Science and the Scleroderma Girl: The Patient Scientist”

  1. MacKenzie is a great helper!
    Your doctors must enjoy having you as a patient:)
    I find your info about food to be so true. I can feel how food effects me and I try to eat the right stuff.

    1. I think that my doctors do like me. One of them told me over the phone that she did, and one day my rheumatologist hugged me when she left. It has taken a few years, but I am feeling really good about my team.

      MacKenzie excels at helping!

  2. Wow! I was going to say just what nothingbutknit2 did. I’ll bet your doctors are super psyched to work with you!!

      1. Well, I decided that I wouldn’t settle for bad science in a doctor. One was completely dismissive of test results that didn’t fit his diagnosis, even though they matched what I was saying. Unacceptable bias; i switched doctors.

  3. I like your scientific approach very much!
    I thought about keeping some journal of my food intakes to see how they affect my (much less serious) symptoms, but when I tried to talk to some doctors with a rational approach, they didn’t seem to keen on my take….
    I need to come up with a data journal similar to yours.
    Many thanks for sharing your experiment – it’s VERY interesting, and empowering for patients!
    Have a lovely weekend!

    1. I highly recommend the food journal. The best strategy is to stay away from highly processed foods and to change only one thing at a time. I also did a lot of symptom searching on the internet. You’re right… It was so empowering to start to figure out what helped. Everyone told me to get off gluten for example… after 3 months it was clear to me that it was not a problem and im back to eating breads and pastas. 😼

      1. I haven’t kept a journal but so far my impression is that starch (or gluten?) as well as sugars aren’t very good for me.
        Though the best way is to scientifically track the intake and the symptoms, based on this evidence then better inferences can be drawn 🙂
        I’ll have to think of the best way to organise the data tracking
        Thanks for sharing!

      2. Several people have told me that cutting out sugar really helps with inflammatory symptoms. Starch is related to sugar as your body converts starch to sugar really rapidly. Maybe cutting down white rice, white potatoes, and other quickly converted foods will work. Try it out!

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