The honeymoon phase of getting a diagnosis is ending. Tonight I have had my first real cry over this new aspect of my life. I don't know what I had expected, that maybe I would have the diagnosis of RA but the pain would of course stop, my life wouldn't be all that impacted, not enough to inconvenience me, and I would press on just adding one more health acronym to my list. Why do we always assume we are the exception to the rule? Its like a twisted Pollyanna way of looking at life. Maybe its what we have to do to stay emotionally together until we instinctively somehow know we are able to now deal with it, with the reality of the situation.
My realization that life will not just include a few more naps started Friday night. I went to dinner with my brother and fam for his birthday, and though tired, was fine most of the night. I picked up my 1 year old nephew a few times, and played with my 3 year old niece some. After I got home and went to bed, I woke up multiple times in the middle of night with my shoulders and elbows of both arms very stiff. This morning I woke up and went to lunch with a wonderful friend who also has struggled with an auto-immune disease. Talking to her did not bring up anything surprising, but every once in a while I would pause and the words that we were actually saying would sink in. The ways we both have experienced pain and tiredness, and the same rheumatologist my friend had recommended. This isn't a game. It isn't a movie, or a book. This is real life. I can't walk away and say 'ok, its been fun seeing what life was like with rheumatoid arthritis but i am tired of it now, lets move on to something new.'
Old habits must die hard bc even though very tired, I decided after lunch that a shopping trip to Michaels was a good idea. Once there, I decided to get a cart even though I was going in for one thing, never mind that I literally could not push it with my right arm! I shopped for about an hour, got what I normally would want to get (ie 7 heavy candles on clearance, 3 large baskets on sale, 7 glass jars for an idea I have, 4 new canvases in a pack, a backless frame 50% off for the art show in March, and candy.) I was regretting being in the store and not home in bed where I knew I needed to be, and by the end I was struggling! I forgot that I have to get the heavy stuff INTO my car. I forgot that I then have to get it INTO my apartment! I didn't make it that far, it is still sitting in my car. I better not park outside without a cover or my candles will be a ball of goo.
All this, and I was ready to just. go. home. And then I remembered my prescription that I needed to get at Kroger, plus the essentials of milk and bread. I was so frustrated, tired, hot, in pain, and had to still run this dumb errand. By the time I got home for real, I put the groceries away and fell asleep for about 3 hours.
Tonight I have felt this now typical bleh malaise that doesn't seem to lift but for short amounts of times here and there. I didn't have a bad night, just watching tv mostly, but as soon as I got up to go to bed it felt like the weight of all the small realizations today piled on top of each other and added up to a ton of bricks. I started crying out of frustration rather than physical pain. I am actually going to have life changes because of this. I might have a day where I am home alone and can't do something. Do I make friends with my neighbors now so I can go over there for help if needed? (I am typical big city apartment tenant, I have no clue who any of my neighbors are). I know to take it easy, and in the future have to stay home at times and not go out. How will I get my people fix? I don't have a husband to give me automatic community (assuming we would have a healthy relationship).
This is so vain, I admit. I have this rheumatoid nodule on the top of my hand. It is quite small to everyone but me, I'm sure. I don't know if those go away. My wrist looks like I banged it, but I didn't, it just has a bruise color that doesn't fade and under it hurts like it is on fire. What if I get those RA hands that the sweet elderly people have before I am out of my 30s? What if more than just my feet and jaw joints really do get degraded and deformed?
I realize I could what if all day. And I know it is not helpful for anything. But I'm a girl, of course I have these thoughts, and I want to stop ignoring them. So, in processing the very normal fears that come up- here is what I will do if those challenges come. If I get deformed hands, I will rock them. Crooked fingers and swollen knuckles doesn't mean I can't get my nails done, or moisturize. If I need more surgeries, I will take them one surgery at a time (and we are so starting with my left foot as soon as I can stand to have a broken foot again). I will practice writing with my left hand so it can be seamless to keep working if my right hand continues this way. If I need to stay in bed but need a ppl fix, I do own a cell phone. When I need to take a break from picking up my niece and nephew, I will sit on the ground and let them climb all over me. Life doesn't seem quite so depressing right now.
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