A new diagnosis (sorta), and a new sport
|October 16, 2022
|Posted by Melinda under Uncategorized
A month ago a friend said “we should do a cyclocross race!”
Any reasonable person would have relabeled that particular contact in their pone as “Cyd@BadIdeaFriend,” but instead, being the entirely sane person I am, I immediately upgraded her status to @BadAssMF and said “where do I sign up?”
Because, of course my hobbies are definitely not already closed-casket ready.
It’s been a little more complicated than just signing up for a race. First there’s my schedule.
Which isn’t actually a schedule and like the mind map of a demented ADHD squirrel who runs happily after shiny objects.
And then…..there’s the fact I haven’t actually done anything except polo for almost a year.
Apparently that’s what happens when you have chronic pain and an undiagnosed auto-immune disease.
You don’t actually want to do anything, even if you don’t realize that’s why you can’t do anything.
Remember this? “I’ll just stick my head in the sand in a little bit longer and pretend that this diet-responsive joint pain isn’t going to get any worse or morph into something *else* that requires specialists and doctors. I’ll just be over here with my cashew milk ice cream pretending that eeevvverryyyttthhiiinnnggg willll beeeeeeee oooookkkkkkkaaaayyyyyyy.”
I’m a bit dense. when I fall short on a physical activity, I immediately assume it’s some sort of inherent failing in my training. *I* didn’t train hard enough. *I* am not fit enough. *I* didn’t eat right to support my training.
Sore calves and unable to walk after 50 mile endurance horse rides? Definitely need to do more calf lifts and weight training at the gym. Or…..take electrolytes. For the calf and muscle cramps. That have nothing to do with strength. That revelation took YEARS.
Part of the problem is when you don’t fit the image of “an athlete” either in your own mind or others, it’s really easy to blame diet and training over anything else, because if you were doing that right than you would look like an athlete so since that’s the most obvious issue, that’s where the problem lies.
We’ve known I’ve probably had an autoimmune thing going on for a while, since I had markers for *something* back when we were figuring out the eye thing. At that time I was introduced to the wide world of autoimmune diseases….where everything is a continuum and not everything has a name.
(if you thought that was funny, here’s the thread)
Here’s the cliff notes version of the last 7 years.
- Set the oven to going blind.
- Add in autoimmune markers and a whole lot of “we got nothing” testing to a bowl and mix well. Preferably with tears and resolutions to stay off google after 9p.
- Bake for 3 years and watch for other developing symptoms. Like waking up one day and suddenly having the other eye go blind. Or some other sort of neuro related sign. Checking the oven is frowned upon but let’s be honest, does a cake properly bake without glaring at it at least every 5 minutes?
- Remove from oven. Get a probable nerve sheath meningioma presumptive diagnosis instead (No confirmation testing available, but everyone agrees it’s the most likely).
- Top liberally with radiation therapy
- Serve on platter with a slice of hefty monitoring to see what happens (because it’s slow growing if meningioma and additional vision changes if it did NOT work are probably going to take 5+ years to show up, in addition to any radiation effects of surrounding tissues that will take even more time).
- Age for 3 years.
- Attempt to enjoy life, but realize that it’s really hard with one eye and a body that feels older than it’s years no matter what I do or don’t do.
- Realize after a year that the daily chronic pain is probably autoimmune. Remember how truly awful step 2 was and decide to skip right right over to step 3….wait and see and cure thyself with essence of denial
So I tried diet. It was going well. Reduced my pain at least 50% and I had whole days without pain where I could swing a polo mallet, do yoga, and open jars in the kitchen.
Then I got Covid.
Here’s the problem with getting covid. It reacts with your immune system in really weird ways (no, it’s not the flu). Corona viruses do the same thing in the veterinary world too (looking at you, FIP in cats). Apparently I am a cat.
My covid experience at the beginning of August was one of immense joint and muscle pain. 9-10/10. Sitting in my chair for two days trying to dissociate from reality because I just hurt.
I was really really really hoping to return to my reality of “diet-controls my joint pain!” post-covid but it turns out that isn’t me.
Nothing worked. The things I did, the things I did not do. The things I ate, the things I did not eat. The jobs I did the jobs I declined. The OTC drugs I took…or didn’t.
You got the idea.
I finally made an appointment at the beginning of October knowing that they were probably going to give me prednisone, and being at the point mentally and physically that I was going to say yes to that recommendation.
They started me on a really high dose. After more than a week, I’m still on a hefty dose. I hate it. I can’t think. I keep passing out because I’m forgetting to eat (I know, weird right? Usually pred makes you hungry).
The pain in my shoulders is gone.
The range of motion is almost back to normal.
In mere days.
And here’s the other thing.
Underlying the more obvious pain and loss of range of motion in my shoulders and elbows was a lot of other issues I hadn’t even realized, that also resolved, that are all probably related.
Welcome to the insidious nature of chronic disease.
Ever since I turned 35 it’s been a hard fought war keeping my mobility and flexibility. I thought it was aging. I thought it was all those running miles on my body. I thought that was why most days I was so stiff I have trouble picking stuff off the floor and I was getting worse at yoga, not better. My hands and wrists? Thousands of surgeries a year is a lot. Gradual weight gain over the last 2-3 years? You are getting older. Handwriting getting worse? You are a doctor after all. No energy? Look at the hours you are working.
It all went away on pred.
All of it.
I can bend over. I can do yoga. I’m “normal” muscle sore after working out, not debilitated and hobbling as if my body was made of brittle glass. I can walk across the floor in the mornings with my hips unfolded and my back straight. I can write my records legibly. I can open jelly jars and peanut butter. I can hit a polo ball across the arena and actually get into position for near side shots. I can lift saddles off the top saddle racks. I can drape surgery patients and reach for instruments. I can sleep through the night without having to wake up fully to readjust my aching body. I can pick up Paige and carry her or hug her. I can hold dogs on a leash. I can turn my cars steering wheel without shuffling my hands around. I can reach in the back seat. I can take off my own shirts and sports bras at night. I can run. I can bike ride. I can handle horses without worry they are going to jerk my shoulders.
I’m working out again. *happy crying*. Is this why I haven’t done an ultra in a year?
I had no idea it was this bad.
Diet only “worked” because it had been so long since I had known what my body could feel like. It took away the pain, but not the mobility and I was still so limited.
I guess Covid was a blessing in disguise in that way, that it made an underlying issue so bad I had no choice but to finally get help.
My diagnosis is still unknown. Obviously with my history of sudden onset blindness in one eye that has a presumptive but not definitive diagnosis is concerning and the likelihood of autoimmune going WAY up now has trigged a flurry of activity with my team of health specialists. Monday I “rallied the troops” and sent So. Many. Messages. Updating doctors across four different health networks what was going on and making a plan. There’s arguing about what it could be (again) (PMR! No! She’s not old enough! Well, maybe statistically….Gotta rule out GCA. It’s not consistent. She’s blind in one eye! Oh yeah, Gotta biopsy for occult GCA! She’s on pred. Get her off pred. Biopsy, put her back on pred. How far out is a rheum consult?). There’s testing for stuff that mostly has no good tests, but getting the ones that do have good testing ASAP (again). There’s every day off I have being filled with doctors appointment (again). There’s stopping scheduling shifts because I might have to cancel if I get a last minute opening (again).
It feels all very familiar.
And at least this time, I have my mantras.
- Stay off google at 9p.
- Knowing what it is doesn’t change what it is.
- Circle theory. Ban people who don’t follow it.
- Find the right support people.
- Find the right doctors. Seek second. And third. And fourth opinions.
- Double check every treatment plan for the risk and the benefit because no one cares more about your health or suffers the consequences of an error, more than me.
So obviously it’s an excellent time to go ride laps on a bike on a course that is most assuredly was designed to break bones and make me scream and panic at every corner (I am not a brave person).
Here’s the preperation schedule.
Tuesday: Sign up for race. Brain is not ready to think about actual skills that might be needed for race.
Wednesday: Do a indoor trainer ride for 10 minutes
Friday: Do an indoor trainer ride for 30 minutes
Saturday 5p: Confirm where and when I’m supposed to be at the race the next day. Hop on gravel bike and confirm it shifts and stops in a few lazy circles in the drive way. Go play polo.
- 4a: Brain decides it is now time to do a crash course (heh heh heh) on the finer points of cyclocross. Pretend this timing of rather last minute reconnaissance is due to the amount of pred my brain is on, not a regular thing. Get up with a cuppa tea and watch a series of videos from GCN youtube featuring Emma, who like me screams and panics at the gnarly bits. Glad I didn’t watch this before or I might have chickened out, or….actually practiced or something. ?
- 6a: Brain decides that’s quite enough prep. Write blog post instead.
- 8a: Publish post (no time for proof reading. Oops), Install bike rack on car, pack snacks and drinks.
- 9a: Meet friend for coffee. A Different friend. Who thinks this is insane and so her contact status is immediately updated to @BetterchoicesRnotasfunFriend
- 10a: change, load bike, drive.
- 11a: check in, practice lap.
- 12:15: Race time. Probably tears and broken bones. We shall see.
Wish me luck!