Part of living with something no one understands is that you don't understand it either. You probably 'get' it more than others, but because there is no standard rule, no benchmark to gauge your own normalcy, you always find yourself questioning it. If I hear about Vasculitis, I immediately go re-google it to make sure I don't secretly have it and my rheum missed it.
(PS. If you or someone you love has vasculitis, the John Hopkins vasculitis resource online is AMAZING.)
It's like diagnosis is a roulette wheel. Every time you hear of something, maybe, truly this is it! You race online to see what the symptoms are. Oh hey, that sorta kinda sounds like me. Maaaaybe this is it!!
Nope. No. It isn't. Ok. Next!
House, MD was truly epic for me because people would watch an episode and send me an email. Oh Jen, have you tried Wegener’s Granulomatosis? they'd ask. If I had I'd reply yes, and if not, I'd add it to the list of other possible diseases I'd take to the rheum.
Then, I'd open my speech by saying, "I'm sure you've considered Wegener’s Granulomatosis, but can you tell me why this disease doesn't fit my symptom?"
If it was my trusted Rheum, he'd take a breath, brain going through a million neural file cabinets and comparing my notes to his stored data files. Sometimes he'd actually hold his breath while thinking. I don't enjoy this patient induced torture, truly, but it does make me pleased to have a smart doctor.
Generally, everything comes down to my brain MRI and my lung x-rays and that incredible LACK of elevated anything in my labs.
MRI of brain with TRaPs:
Me:
Depending on who I'm having my appointment with, I can be quite forward and say, "So, let's say this is an atypical presentation of xyz, what is the treatment?"
And believe it or not, the majority of treatments are the same.
Weight loss
Light physiotherapy
NSAIDs
Steroids
Plaquinel
Immunosuppressives
And, if you're lucky, injectable biologics.
Occasionally, like with Familial Mediterranean Fever, you might stumble on success with Colchicine, but it's very rare for a single drug to be SO effective for a disease.
When House did an episode with a father and daughter having Familial Mediterranean Fever, my diagnosis at the time, I received so many emails about it! We didn't see the episode for at least a year, but it was frustratingly amazing that the show featured FMF.
Of course, the father and daughter make a 100% recovery of symptoms after being treated with IV colchicine.
When I saw the episode, I swore off the show for the season. It was so demoralizing that a chronic, incurable condition was waved off with a magic wand of a day of IV drugs. IV colchicine is a last resort, and most patients will still have symptoms of the disease after the acute treatment. They are STILL sick, every day, because it is a Genetic condition. Not a once in a lifetime acute illness.
This is the daily battle of life with a genetic illness. There is often no reprieve from the symptoms, but like everyone else, there are good days and bad days.
At the moment, I am severely fatigued. There just is not enough oomph to force these muscles to work. It's definently a Spoon Theory day for me.
Aside from the fatigue, my muscles are burning all over. In my arms, in my legs, in my chest. I've got that heavy band feeling at the back of my head. I want to be up and active. I want to do so much more. But the burning is practically crippling at times. And then, oddly enough, it abates for a few hours only to come back.
I'm making cottage pie for tea tonight. I love any excuse to have mashed potatoes. However, there is a lot of chopping involve. I've broken it into chunks, approximately 90 minutes apart. You'd think it was a military operation, but no. That's life living with chronic impairments.
I'm feeling quite disappointed with myself in regards to my weight. Last year I felt so healthy and alive and lost about 14kg. My physio kept warning me that strenuous exercise can actually trigger inflammation in chronic illness, especially inflammatory illnesses. But, I didn't listen.
And spent months battling chronic inflammation in my gallbladder.
Mine isn't nearly as cute. However, if you're like me and you'd love to remember your organ as sweet, not painful, then try I Heart Guts.
I've never regained that mobility or freedom since. And, all those 14kg are back. High dose steroids for the gallbladder, fatigue and general, often overwhelming, fear of re-triggering all that inflammation has brought it all back.
I've made a goal of getting 50,000 steps on my stepper before xmas. I need to increase my cardio and try to get back some of my mobility. I'd also like to not feel like a beluga whale in a swimsuit.
Actual Photo of Me This Summer:
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