Tracking Symptoms

I wasn’t able all of a sudden to get dressed or hold a toothbrush, turn the key in the ignition. I just you know, just got really sick, lost a lot of weight and happened very quickly. I eventually went to go see a rheumatologist, which I actually resisted doing because you know they tend to give a diagnosis which is for the rest of your life. I didn’t really want to get diagnosis for the rest of my life, so I avoided it to the last minute. But then I eventually did and in order to get a diagnosis I had to track my symptoms.

So I figured that there would be an app for that, and shockingly there was no app for that. So I had to journal on pen and paper which was horrid because a lot of what I was contending with was I couldn’t use my hands. So anyway I started working on designing an app simply to track symptoms and their severity.

Before tracking my symptoms, my doctor wanted me to do it so again we could get to the diagnosis, but there are some other interesting things about actually being mindful about what your symptoms are. Number one, I couldn’t remember what my symptoms were. I wasn’t really inclined to sit down and really think about my health. Infact it was more the opposite. I really wanted not to think about my health.

It was also hard to be impersonal because I have to come up to HSS here on the East side, so the two hours could really influence the way I report my symptoms. If I had a difficult commute it would have a different affect than if it was really seamless.

Another interesting thing that would happen I started to withhold symptom severity, because every time I would go in and honestly report something that happened my doctor would sign me up for another test or another medication, then I was just like dumb but that’s what I did, I just sort of stopped being truthful with my doctor.

Then of course I had that like classic you know, once I did get a diagnosis I started imagining that I had all of the potentialities of this disease, which of course I didn’t; I had none of them.

So once I started tracking with the app, because by this time I had a prototype it really gave me the freedom to do it in just four or five quick strokes a day, done, and then when I went to the doctor’s office I would just show her you know a little bit of what I was doing and I didn’t have to make any choices or decisions.

But then kind of something interesting happened. I fell down a flight of stairs, face first in a parking garage and I ripped open my leg. It was a superficial cut and it looked gross. But you know suppressing drugs because like many autoimmune diseases your immune system is overactive. So they tamp it down with these immune suppressing drugs. But when I did this I had to stop all of the drugs which was great for me actually, because I had to stop drinking alcohol when I went onto all these drugs, so I actually got a little reprieve so I could actually have a Margareta for the first time in eight months, it just like totally made my day.

And that got me into thinking that there were so many things I was giving up because of these stupid drugs. They gave me my life back literally, but on the flipside I was just taking fistfuls of drugs every day. And here I had an opportunity to see what these drugs were truly truly doing what they needed to be doing for me.

So I was like, ‘Oh I can start to really track.’ So I started tracking my symptoms, or paid attention to my symptoms no drugs to see what was going to happen, and when I pulled out most of the drugs my symptoms did not come back. So I talked to my doctor, ‘This is great news for me. Can we talk about maybe pulling some of the drugs away.’

And so we did. We started extricating some of the drugs, and one of the ones that took the longest time to get over was Prednisone, which I don’t know if anyone has been on, it’s basically like crack and it’s really hard to get off of. But it helped me to sort of journal what was happening, because I could see that I did not need the Prednisone.

So as I was tapering off of it and my symptoms were not coming back I was like, this is factual. You cannot talk yourself in to staying on Prednisone. You can see here you do not need it anymore.

So I built an app, the app went from not just tracking symptom severity but also allowing me to attach correlating factors, so you could measure what your symptoms were doing and overlay that with these interventions. So triggers of therapies that might modify your symptoms.

For me it’s all about medications, because medications kind of ruled my life, and I was able to basically pretty much off of all my drugs and I’m just on one drug now. And because I was writing and making an app I of course inflicted it upon everybody in my social circle and family, and these are some of the correlations that healthy people - actually this is lower back pain the one that you guys fired up.

I couldn’t play soccer or do all the stuff I used to do, so I eventually was able to get into a pool and start swimming, but I was getting really bad back pains, so I couldn’t figure it out. I was like, this sucks, how can I be getting back pain from just swimming.

But that was clearly what the data was showing me, every time I went to swim I would have back pain the next day. It turned out that it was I was diving into the pool really sloppily because I had really bad shoulder pain. So I was just tweaking my back like that and that’s what was causing my back pain.

And these are some other things; my husband has sleep apnea and he had to stop drinking alcohol after 9 o’clock. My 12 year old cannot wear 5fingers as they have a grip plate that fractured his heel running in them. A friend’s son migraines and screen time that’s kind of obvious.

This was one for me, methotrexate actually can create (psoriatic arthritis), it’s a side effect and infact happened to me and I took that evidence to my doctor to support my desire to get off that drug.

And that’s it.