It’s been a whirlwind month and a half since I first went to the hospital with my swollen feet.
There I was back in January with a small, sharp pain thinking it was plantar fasciitis or something related, just dealing with it when one night in February, I looked down and noticed my ankle was a little swollen. No biggie, I thought. I had been feeling pain in my left foot, so maybe I was unconsciously over compensating with the right. I went to bed and woke up without swelling.
But then it kept getting worse. And the pain shifted from under my heel to both my ankles, my knees and my feet in general. Finally the swelling and pain got so bad that I had trouble walking so one night, after my late shift at work, I went to the ER. 11 hours later I left with an appointment to see a rheumatologist. Dr. Grant.
Dr. Grant is wonderful. At our first visit, he told me that what I was experiencing was likely Rheumatoid Arthritis. Which was a hard thing for me to hear. He gave me a prescription for naproxen and a follow up appointment for a week later. We talked about all the other joints where I had sharpness or pains and we talked about sarcoidosis, which he felt was not to be completely ruled out, but, he wanted to wait and see what happened with the naproxen. To be safe, he sent me downstairs (his office is in the hospital) for chest x-rays and blood work. Well, I picked up my pills, took them home and started on it. Two days later the pain was worse and the swelling was WAY worse. My legs were one size, from the widest point of my calves, down to my toes. I could barely fit shoes on, even with the laces open as widely as possible. I called his office and he got me back in immediately.
That was a Wednesday. I went to my appointment with him that morning and showed him my feet, which now also had angry looking dark blotches on the skin. Then he looked at my legs, my knees, my fingers and fingernails and told me that my x-ray had shown that the lymph nodes in my lungs were enlarged. A classic sign of sarc. He did an ultrasound on my ankles and pointed out granulomas and swelling issues. He sent me down for more blood work, another x-ray and a ct scan with contrast as well as an ECG. Sarc, I was beginning to learn, is a scary ass disease. He also wrote me out of work for a few days because now I needed prednisone to take down the swelling and I really needed to be off my poor feet. I was fine with that, seeing as walking was so painful and I had been limping around work for a while.
The new pills took down the swelling and my next appointment the following week confirmed it. I had granulomas everywhere. In my joints, lungs, one in my BRAIN behind my EYES (I’m seeing an opthamologist about that one, and it’s likely the reason I suddenly needed glasses this year) and enough of a question mark around my ECG result that I’m being sent for an echo-cardiogram.
I may or may not have had a panic attack about some of this.
Here’s the thing about Sarcoidosis though, that I’ve learned on this complete whirlwind. It’s either going to be acute, and it will all clear up and go away, or it’s going to be chronic and I’ll have problems and flare ups for the rest of my life and NO ONE knows which until I finish my course of steroids and have things settle down.
It’s called “The Snowflake Disease” because it’s literally different in everyone it affects. It’s called the “it’s not cancer booby prize” because often times those granulomas are seen as tumors. It’s called the great pretender because it’s symptoms imitate: arthritis, lupus, chronic fatigue, hashimotos, fibromyalgia and many, many more illnesses. In fact, it’s not unusual for it to go along with any or all of these. The jury is still out on whether or not I also have rheumatoid arthritis with this, we simply can’t know until all the sarc symptoms are gone or under control.
My wonderful husband, who as most of you know, has had his own issues with sudden, extremely serious health/heart problems, has been wonderful through this. He has listened to me rant, he has listened to me cry, and he has listened to me complain. On our most recent date night, we spent a good hour discussing our respective health and how we feel about it all. Who knew that at 40 we would have so much to talk about in that department? Certainly neither of us did.
No one ever expects that they will wake up one morning and be sick for the rest of their lives. We simply don’t count that in the things that we worry about. There are far too many other things to worry about. But I can’t spend my days dwelling on it either. I have to make a choice every morning when I get up. Pay attention to what’s hurting today, yes for sure, but then, adjust, and move on. I have to CHOOSE not to live *in* the hard. I have to choose to let my hard just be a part of me and focus on what’s good. Or at least focus on what needs my attention more. Because there is always something that does. It’s the same mindset that I use when I’m having a bad day with depression. Or at least the one I work hard at using, some fights are better than others. We live in the mindset we allow ourselves to live in. Sure, I could give in to the self wallowing and eating of all the feelings and depression of it all. Sometimes I do just that. But I don’t want to live in it every day. I don’t want ALL my days to be defined by my illness. Because I am not my illness. I am just me.
So that’s it, folks. Opthamologist on May 3rd (I AM freaking a bit over this one, I have a phobia about my eyes being touched and an intense fear of what they may have to do) and echo cardiogram coming up sometime soon. Then follow up x-rays and likely a follow up ct to see if anything has shrunk or gone away completely.
In the meantime, work. Kids. Husband. House.