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. 

Pleasure to meet you!

Writing is helpful. Sharing stories is even more helpful. I'm typically a "holder of other people's stories" both professionally and personally, but I feel it's very healing to get your own story out in the world.

So, it's a pleasure to meet you! I'm "Atypical Dandelion." Let me explain. If I hear another doctor use the word "atypical" to describe me or my symptoms I'm going to snap. So rather than do something rash (or potentially illegal) I'm claiming that word. YES! I'm atypical. But that doesn't have to mean anything negative. I'm unique, distinctive, un-definable and defy all the odds. I'm "atypical." 

The "dandelion" stands for health, persistence, perseverance and fragility. I'm all those things too! I'm on a quest for health. I've learned to be ridiculously persistent. But at times I can run out of spoons and be fragile. Did you know that dandelions are super good for you? It's true! The root, flower and leaf are all very high in nutrients. Why it's considered a "weed" I'll never know. I find them beautiful and symbolic. They grow and thrive in the worst of conditions (much like a lotus flower) and carry your wish on the wind. If you ask me they're magical. 

I'm on a quest to heal myself. I'd like to trust others to heal me too, but so far that isn't working out so well. After my treatment for Latent TB 3 years ago my body just decided not to be doing so well. I'm still trying to get a solid diagnosis, but the best I can tell I have something autoimmune happening, a chemical sensitivity and gluten intolerance (not Celiac Disease.) 

(Good morning breakfast!)

After my rheumatologist appointment last week I was left with the helpful information of "we may never know exactly what's going on with you and we might just have to settle for a best guess." I found that incredibly depressing to hear. Of course she also wants to chuck more drugs at me without knowing exactly what's wrong. Maybe the 7 vials of blood I gave and the MRI I'll have Thursday for my hands will reveal something. I'm ever hopeful. After crying in the bathroom at the medical center and feeling extremely angry and un-heard I decided it was up to me to try and help myself. 

Three months ago out of sheer desperation to find something to help ease the neuropathy in my arms and legs I decided to test out a gluten free diet. I read that sometimes people who have been on long, high doses of antibiotics (like I was for the Latent TB) can develop a gluten intolerance. Right away I noticed a big improvement and that bolstered my confidence.

Although I don't feel like I can really "heal myself 100%" I do feel like what I eat and what I put on my body can seriously affect my health. So I came up with what I called "Plan Ass Kick." 

Plan Ass Kick is Underway!
The pink nail polish was a required mood booster.

Ditto for the pussywillows.

Plan ass kick is a combination of foods to avoid, supplements and foods to indulge in. I'm trying to avoid sugar (a known inflammation causer) and eating a lot of fresh foods. I'm making my own juice every morning with ginger, turmeric, kale, spinach, carrots and apples. I'm getting lots of rest and trying to avoid stress. I purged my beauty products of anything with chemicals in it. I'm using crystal deodorant and "mud" toothpaste. I gave Oil of Olay the kiss off and use vitamin E oil instead. Get the picture?

Its been 6 days since I started PAK. Maybe my neuropathy is a tiny bit better, but that's all I've noticed. But that's where patience comes in. Some medications for Rheumatoid Arthritis (the closest thing my Rheumatologist says she thinks I have) can take up to 6 months to start working. 6 MONTHS!!! So I think I can give it longer than six days.

My symptoms are too long to list. But my major ones are the neuropathy, dizziness, dry mouth, sleep problems, occasional brain fog, fatigue, chronic joint pain and loss of grip strength in both hands (mostly my right though). Cutting out gluten got rid of every GI symptom I was having, reduced my swelling and improved the joint pain. It has been helpful enough to make me go out of my way to avoid gluten as much as I can.

It's really scary not knowing what's going on in my own body. It's very frustrating when the specialists don't know either. It's incredibly exhausting trying to find answers, fight depression and communicate my needs to people who love me. Spoons are hard to come by and I'm hoping this blog will be a tool to help me hold onto some of them.