You know that old saying about walking a mile in someone's shoes, right? Well, I'm learning what it is to walk a mile in the shoes of someone with a chronic illness.
I wasn't going to post about it because I've been trying to be all "keep your head up" about it. When a Twitter friend asked me about how I was doing, I almost gave the usual polite response until it dawned on me that speaking up might help others. I have run across other blogs and forums where people have spoken up about their experience with Sarc and that's helped me. So, my turn.
When I was first diagnosed I was told how rare Sarcoidosis is supposed to be, but within weeks of telling people I had it, I found out about 3 people in my area who also have it. One person is a guy I used to work with, another is an acquaintance of his and still another is a member of a family I am fairly close to. Later I learned that possibly tens of thousands of people in the U.S. alone may suffer from it.
There's no relief in knowing that I am not alone or part of some minority. It would be easier, I think, to have some disease that's more well-known - both for the treatment and the understanding. What's most frustrating about dealing with the effects of Sarc is that no one seems to really understand what it feels like. If I had, say, diabetes or had suffered a stroke, at least people could empathize when I described a symptom. In the case of Sarc even I don't know all the symptoms so I'm constantly worried.
The other day I just went into the bathroom and cried for half an hour. Why? Well, let's see, my back aches and I don't know why. My eyes feel swollen and itchy and sometimes are red for hours. And I don't know why. When I walk for any amount of time, my legs get tired and heavy and I'm worn out like I've run a marathon. And I don't know why. I break out into sweats at any given moment. And I don't know why. Worst of all, my brain seems to go on hiatus at various times, making me feel completely stupid and incompetent. And I don't know why. I feel so cranky all the time. And I don't know why. I feel great for a time and then fatigue slams into me like a wall. And I don't know why. Parts of my face, arms and legs go numb for whatever reason... Don't even get me started on what the medication does to me. The prednisone has me swollen to 40-plus pounds over my usual weight. The methrotrexate has my hair dry and falling out. My cuticles are dry, cracky and they hurt to touch anything.
I'm only 50 years old. I feel some days as if I am going on 80.
My best comfort has been in talking with the guy I used to work with. I find myself calling him up or texting him to ask ridiculous things like "Do you get the really horrible back ache for no reason?" Or, "This sounds crazy, but do you lose your train of thought right in the middle of doing something?" And I can't tell you how relieved I feel when he can say that the same thing happens to him. With other people, I don't think they take serious how scared it makes me feel. They care but they don't understand. How can they when I don't understand it either.
So, I am walking that mile. And it's so hard. It's hard not to feel sorry for myself. It's hard not to be upset at people who just seem to be clueless about how I feel.
That's all the bad stuff. Now, the blessings:
I know that God has a plan. He's never let me go through anything without a lesson. So, what have I learned or gotten out of this nightmare of Sarc?
I have been humbled, which is never a bad thing! I have gained compassion for anyone dealing with an illness or some other situation out of their control. I have been forced to do more praying and thinking and sitting still. I have received kindness and support from unlikely sources. I have learned to appreciate the things I can still do.
Most of all, I appreciate being humbled. One of my sins was my ego. It was easy for me to look at a person who didn't have what I had or wasn't able to do what I could do and dismiss them. I'd shrug them off as not worthy. I didn't consider what might have brought them to the place they were at and was holding them there. Now I understand that, for all I knew, God might have been working on them the way He is working on me. I've learned not to try to be all-knowing about people and their situation. I've learned that I am not as wise as I might like to think! lol
God has had to break me to make me.
Whew! I think I feel better getting all that off my chest. In the meantime, I hope that my Christian brothers and sister will pray for me. Pray that God's will be done.
Moreover [let us also be full of joy now!] let us exult and triumph
in our troubles and rejoice in our sufferings, knowing that pressure and
affliction and hardship produce patient and unswerving endurance.
And endurance (fortitude) develops maturity of character (approved faith and tried integrity). And character [of this sort] produces [the habit of] joyful and confident hope of eternal salvation.
hope never disappoints or deludes or shames us, for God's love has been
poured out in our hearts through the Holy Spirit Who has been given to
us. (Romans 5:3-5)
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