Why I’m going to write about my health

People keep telling me I need to write about my health journey. My response is usually: “why”?

I’ve been putting it off. I don’t like doing things without purpose. I don’t care about being known or having followers or whatever people are doing online. But now, a couple of years into a series of health incidents that get more and more cryptic, I realize I have learned some things that might help other people. If I can help someone avoid what I’ve been through, it would be worth the effort. In my search for answers, I have scoured some online blogs and journals, and found my own hope and renewed determination. I want to give that same thing to those who are dealing with their own health issues.

There’s a secondary goal in all of this too. When things start to come apart at the seams, it’s really, really hard to keep in touch with people who matter. Sometimes I am unable to hold a phone and dial it even though I’d love to call or text you. I have so many ideas for accessible items that would get me through my day. But they don’t exist yet. So when I am ok to write, know that you, my friends, colleagues, family, and acquaintances are also on my mind. I hope these can be little updates for you too. Know that I am sometimes up and sometimes down but always pushing forward with whatever energy I have. To those of you who know me personally, thanks for following along. All of your texts, notes, cards, and well-wishes keep me going, even if I don’t respond often or enthusiastically. You give me that energy to push forward.

My name and the names of those mentioned here will be changed because I am divulging personal stuff. The folks who care about HIPPA are going to be raising their eyebrows at me.

There are many lessons and mistakes that I want to share, but I have to start small. My energy comes in bursts, and each day revolves around squeezing what I can from each burst (sounds like a candy commercial!) and accepting when it’s time to rest.

So in today’s burst, here are some things I’ve learned from my journey so far:

Doctors offer support in the form of (very!) educated opinions. Do you remember the moment when you realized that your mom or dad or parental figure wasn’t perfect and all-knowing? I remember having that feeling as a teenager and it terrified me. I had that same realization with my doctors recently. (At this point, I’ve had so many doctors say stuff like “atypical”, “ideopathic”, “cryptogenic”, and “rare” that I am considering making a Rare Disease Bingo card.) In all seriousness, once I realized this, I realized that I was being unfair in asking for perfect answers. I had to accept that sometimes, while a disease is progressing, it has to be observed and poked and prodded before it can be given a name and a better treatment. It’s painful and frustrating and time-consuming. It’s debilitating. But battering a doctor with more questions and more expectations can’t solve that problem any faster sometimes. Even getting to the right specialist can take time.

When the veil of omniscience was lifted, I struggled with how to engage with my doctors for a while. I didn’t like feeling suspicious. So I started asking questions. Those turned into honest conversations. And, eventually, I started treating my doctors like very smart expert peers. The conversations became more helpful. Good doctors are investigators, and if you can level with them about their investigation, you can be their research assistant. After all, you have access to all of the best evidence. You are with your body 24/7. I can’t wait to tell you about all of the experiments I’ve done with how I handle my appointments, what I bring, and what I ask. I track all kinds of stuff for my doctors to help them figure out what’s going on with my body. My process has evolved over time and it has a lot of room to improve, but it has helped tremendously with getting better opinions — and better care.

Some doctors are just duds. They’ve either given up on being investigators, or they are biased against something that you are, or they have become myopically focused on treating one thing and you aren’t that one thing. Some of them are burned out and don’t want to be doctors anymore. I’ve had to learn how to weigh the useful opinions and recognize & discard the duds. Doctors can be wrong. You have to decide how much you trust each opinion. And even then, just because you trust someone doesn’t mean they are right. Even the concept of “right” and “wrong” for a doctor is fuzzy. They usually make decisions with imperfect information, and we as patients seem to equate “right” with being able to predict the future. Even with perfect information, predicting the future is…ambitious. I don’t know about you, but I’d feel pretty nervous about being expected to predict the future at my job. Doctors are smart, well-educated people. They know tons that we don’t know as lay people. But they are still just people doing a very complicated, high-stress job.

You are allowed to refuse a test or treatment. This was so enlightening for me. I had an appointment with a GI doctor and I’d been dreading getting help because I had a terrible colonoscopy 15 years ago. It was so traumatizing that I have nightmares about it. I was awake during the whole thing even though they’d given me anesthesia, and I felt pain but was paralyzed and couldn’t scream or ask for help. I could hear the doctor chit chatting with his assistants casually while all of this was happening. My skin is crawling again just thinking about it. Anyway, I didn’t go to a GI doctor for many, many years because of this experience. Finally I give in to my primary doc’s recommendation that I get a referral. So I walk into a new GI doc’s office full of anxiety and baggage, dreading the moment when the “c” word comes up and I am forced to decide if I can handle that terrible procedure again. In the middle of the exam, I just blurt out, “I can’t have a colonoscopy” even though she hadn’t mentioned anything of the sort. Fortunately, she didn’t think I needed one anyway, but also said that there were other options to look at my insides that were less invasive if that was a requirement. It had never occurred to me that there might be other options if I refused the most invasive option.

Here’s another example of refusing a test. I am positive for Sjogren’s antibodies with some very mild symptoms. In order to confirm a diagnosis, my rheumatologist wants to biopsy a salivary gland. I ask if the results of the biopsy would change the treatment. She says no, she treats based on symptoms. I ask if it would give a definitive diagnosis. She says no, there’s still a 30% chance I’d get a negative biopsy but still have the disease. I decide that I’d rather keep my salivary gland. I don’t see a clear enough benefit. She agrees that’s a valid decision and we’ll keep an eye on things.

I also learned that you can refuse medication in the hospital. I learned this when I started taking an antibiotic that made me very sick to my stomach. After days of pain and discomfort, I mentioned it to nurse, who said, “Oh. Are you refusing this dose?” And I said, “That’s a thing? I can just say I don’t want it?” And she nodded, confused, as though it were blatantly obvious that it was optional. I started refusing it, and that prompted the doctors to figure out another option that didn’t make me sick. I wish I hadn’t waited so long to speak up and say something!

When I realized I had control over my body in the medical environment, the nature of my care changed. With the opinions of the doctors, I decided what to weigh and do for my own care. I am much happier with the results. I feel like I am more in control and more in tune with what’s happening, even if it is still a difficult situation.

Appointment preparation often pays off. I have worked in corporate settings where, once in a while, you get to give a presentation to ask “the important VP” for something. You might only get 15 minutes or a half hour. You need an answer but you need them to have the right information in order to give you the answer. Those 15 minutes become the most prepared-for minutes of your week or month or year. You do your best to discern what that person needs, what they will be thinking, what their biases will be. You summarize info down to the smallest digestible formats and bring along a massive set of “appendix” type info in case they ask a question. You spend way too long on a presentation that only lasts 15 minutes, but if it’s successful then it’s worth it.

I used to go into the doctor’s office being non-specific. After all, it’s their job to figure out what’s wrong, right?

“Yeah my ankles hurt. They feel a little swollen. Oh, for about a day or two. Nah, I don’t think I took anything for it. Oh, wait! I took Advil. I can’t remember how much. I don’t really know if it helped.”

Eventually I came across a doctor who pushed me when I gave answers like this. He said, “I need to know X. Keep track of it and send it to me every day.” When I went home and paid attention, I realized I was overlooking a lot of little details about my symptoms.

Over time, I realized that my treatments and care were better if I could provide better information. This might seem very obvious to some people, but I really was clueless. It simply hadn’t occurred to me.

Now, when a collection of symptoms start, I write down the specifics. Specific symptoms. Pain rating. Photos of visible symptoms. Medicine I took and whether it helped and how much. A detailed timeline of when everything happened.

The doctor is a bit like the “important VP”. The VP of your healthcare, if you will. When you have 15 minutes with your doctor, you can’t just vomit a spreadsheet and expect them to have an answer. You need a VP-level summary. The challenge is that it’s hard to know what a doctor wants or needs. It’s hard to know what clue will allow them to help more easily. Part of their art is being able to discern signal from noise, but they don’t have time to sift through all of the noise. I am still working on this part, but I have gotten better at knowing how to filter information as I’ve seen doctors work through my case.

Okay, my energy burst is starting to wane, so I will stop at 3 things I’ve learned. But I have learned so much more than that. Another time.

The common thing in all of these items is that they illustrate how getting help from doctors is hard work. It’s about more than just showing up and hoping for a miracle. If you are sick and complicated like I am right now, it is a part-time job. I spend not minutes, but hours each week collecting information for my doctors and putting it together for them. Making sure records are available and faxed and copied and in the right order. Making sure answers are available when they are needed. Even reminding my doctors about what tests I need or where we are at in our plan. I’m the project manager for my health, and it’s my most important job right now.

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