How many times can I say ‘I miss’? I miss how easily my body used to move- move through the day- move through exercise- move through life. I miss pizza ( gluten pizza). I really miss being able to see well. I miss the ole me.
The past 3 weeks have been especially challenging as I work though the very worst flare I’ve had since I was diagnosed. According to my doc- methotrexate has stopped working after 3 years of controlling my RA. So, he increased it to the highest dose for a 3 month trial. And if it doesn’t work – and it’s not- the next step is to add a biologic DMARD. In the meantime- this dose feels like it’s poisoning me- the headache, nausea, next day hangover from hell. So I’ve been pretty miserable for at least 4 weeks with this reaction.
At the same time, either my autoimmune retina disease or my newly diagnosed autoimmune cornea disease is causing my vision to change dramatically. I’ve had a total of 4 refractions in the last 6 weeks- everyone was extremely different than the one before. I haven’t been able to read since I had the strange virus and eye infection in January. I can read my iPad for about an hour a day until the glare hurts. My fingers are crossed that a solution will miraculously show up!
Over the course of the last few weeks- I’ve become increasingly depressed. This is not a feeling that I’m familiar with – so I’m not dealing with it very well. I already know that drugs and shrinks don’t work for me. It has to resolve from the inside out. I normally work these things out by writing – but when you can’t see- writing is not the answer. I’ve tried dancing – which is actually doing my PT to music and adding a beat! Walks improve my outlook – but they also exacerbate the joint pain. But this week – I tried something totally different.
I stopped into my local Anytime Fitness -not expecting much because I’m used to a much ‘fancier’ health club. I was looking for a really good indoor bike – because I know that’s something I can do without much joint pain. I have a degree in health and fitness – and I love working my body.
But, alas, I had gotten into the mindset of ALL of the things I COULDN’T DO! I had forgotten to focus on all of the things I CAN DO!
It was the owner of the gym who pointed this out to me – and I will be FOREVER grateful to him for giving that part of me back.
He kept saying to me ‘ STOP USING THE WORDS ‘I CAN’T’! Because you CAN – just differently than before.
Isn’t this how we should be looking at living with rare disease? We can’t be around sick people – but we CAN ( fill in the blank). We can’t stay healthy – but we can ( fill in the blank).
What is it that you think you CAN’T do? Maybe with some modification you CAN do it.
I would love to hear your ideas?
Later – my eyes are killing me. Sorry for misspelled words- misplaced commas, etc