Start where you are. STEP BY STEP.

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




  • Tess Galati Posted July 18, 2018 5:17 am

    Oh Carol, your bright spirit shines right through. Physical discomforts of all sorts seem to be mandatory with our zebra bodies, but suffering is optional. You GET that and you inspire us all. Thank you.

    • mm
      Carol Miletti Posted August 21, 2018 2:32 am

      Thanks Tess

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