Living in fear

Wasn't there once a high school class called "Health and Safety?" I seem to recall making kissing jokes while people tried to perform CPR on a dummy. But that was a very long time ago.

Today with the Coronavirus all over the news health and safety are at the forefront of my mind. Not "stockpiling toilet paper" on my mind, but enough on my mind that I'm taking extra precautions. Given my heath issues I don't think it would surprise anyone if I just self quarantined till this was all over. But I'm not. Here's why.

Shopping at Costco with my cotton gloves on yesterday.

Five years ago I contracted TB. It's also an airborn virus that frequently kills people. Fortunately for me there was treatment for it, although nine months long and damaging. After I recovered and was about to return to work I developed a serious phobia. My phobia was about people coughing and being in close contact with others. Strangers were the worst. If I had to shake someone's hand I was left almost in a panic. I had developed a real germ phobia that was interfering with my life. 

What got me out of it was this. I realized that the fear of getting sick again was ruining my everyday life. My quality of life was going down because of fear. So I rationalized with myself. Told myself I can take reasonable precautions (not hug someone whose sick, buy an air purifier for my office), but that anything outside of hand washing and common sense was just me letting the fear into my life. I refused to do that so I decided not to. And that was it. Literally from that day on the panic stopped. 

Fear was telling me that I was going to get sick again. Something in reality I have very little control over. Zoom ahead five years and I still refuse to let fear dictate my life to me. No one knows how long they have. I could be in a car accident, get run over in my wheelchair, get food poisoning, have a stroke. I have no idea how or when, but I do know that I'm going to make the most of it and not live in fear.

I will wash my hands for 20 seconds, I will brush my teeth twice a day, go to my doctors appointments, use hand sanitizer and not be stupid. But I will not stock pile toilet paper, buy every Clorox wipe there is, or cancel plans I've looked forward to because of fear. Fear will not dictate my life or how I live it. That's a choice that I made years ago and I never looked back.

When did Myopathy start?

I've always placed the start date of my muscle weakness April 26th 2018, 13 days after starting Plaquenil. My husband has felt that it was the Plaquenil that caused my Myopathy. But I had a memory the other day that places the real start date MUCH earlier than that. 

I remembered being at Disneyland in November of 2017 and feeling like I was being especially tossed around. I even told my husband that I felt "weird," like my muscles weren't holding my body in place like they should be. Upon looking back I'm wondering if that was my first sign of myopathy.

Not having a very specific diagnosis is frustrating, not having a clear cause is also frustrating, but now not even really being clear when it could have started? Yes. That's hard.

Is it just a genetic mutation that somehow got turned on? Was it the affects from my brain tumor that I'd had since at least 2015? Was it from the Latent Tuberculosis or the medication used to treat it in 2016? Is it from the Plaquenil I was put on in 2018? I may never know. 

Having a chronic illness often means endless doctors appointments, new symptoms that sprout up literally overnight and having more unanswered questions than answers. I'm slowly learning how to live in this zone of "unknown".

I may not know exactly when my muscles started breaking down, but I do know how it rules my life today. I know I can't dwell on what I used to be able to do yesterday that maybe I can't do today. And I can't focus on what I may not be able to do tomorrow. I live each day as best I can and feel grateful that I'm not in this alone. 

Faces of Change

2015

Today - 2018

Vindication

I'm reading through my new copy of "Living with Rheumatoid Arthritis" and I come across this...

It says:

"In fact, many people with RA say that they just don't feel well."

This was mind blowing to me. Ever since my treatment for Latent TB that's exactly how I wanted to describe it. That I "just don't feel well." That something is wrong. The book goes on to discuss how RA is thought to be genetic in base, but that it's "triggered" by something environmental like a virus or bacteria. Then it goes on the specifically name TB as a potential trigger.

My mind was blown.

Vindication right there. I'd been telling my doctor and neurologist for over a year that something was wrong. That maybe I should see a rheumatologist. That I was having "stocking and glove pattern neuropathy." The neurologist, rheumatologist and my doctor told me that you don't have neuropathy in RA, but this book clearly says that you can. In fact the "stocking and glove pattern" is the most common type of neuropathy that goes along with RA. VINDICATION!

I can't begin to explain what a relief it was to read all of that. That a serious illness (like Latent TB) can trigger RA. That neuropathy can happen. That RA isn't always perfectly symmetrical (my right side is far more affected then my left.) All of these things in black and white. 

So now I have a NEW neurologist that I'm seeing at the end of June. Though the DMARD I'm on is really helping the neuropathy. It used to wake me up every single night, typically many times. Now I can sleep through the whole night, which I haven't done in about four years. I also spoke with my primary care doctor about getting a new rheumatologist. 

I was right and these specialists were wrong. I'm so glad I stuck with it and refused to back down. I was determined to solve what was going on with my body and now I have some answers. Best of all I have a treatment that's helping.

So trust your gut. If you think something's wrong, don't rest till you get answers. Don't let it consume your life, but also don't just let it go. This is a tricky balance, but one that's incredibly worth it.