Dear Rheumatoid Arthritis
Last week I shared the “Dear Rheumatoid Arthritis Survivor” letter that my wife found.
This is my take on it.
Dear Rheumatoid Arthritis
1. First I want to say that this really rings true to me.
2. I don’t like the word Survivor, we aren’t surviving Rheumatoid Arthritis, we are coping, managing, dealing with, and living through, but most certainly not surviving it. I have already realized that I will likely die from RA complications of some sort, but in the meantime, RA, you can piss off and get the hell out of my way.
3. The very first paragraph, hit me, I realized that since I have been dealing with RA I have cried for absolutely no reason. It isn’t from pain (well sometimes it is), it isn’t from something that makes me sad or happy for that matter. It is just crying to cry I guess, it is totally uncontrollable and at times it is very embarrassing, especially since I’m a U.S. Marine
4. The lack of energy and total exhaustion is the hardest part for me. I have always been running around, always chomping at the bit, always burning the candle at both ends and in the middle at the same time, always on the go and now I have days where I wake up more tired than I was when I went to bed. The lack of sleep is a killer as well, even on prescription sleep aids, I can just lay away all night long, and on nights like that my brain focuses on every little pain, ache, twitch and spasm
5. Some days I can’t get any sleep and other days, I can’t get out of bed. I’m one of those, up at the crack of dawn and hitting the streets running, and now there are days that it is 10:00 am and I’m still laying in bed, telling myself to get up, as I roll over to the less painful side of my body.
6. The hot and cold it terrible, Some days, feel like I’m an 85-pound female, who is wearing a jacket outside when it is in the ’80s.
7. I’m going to skip over the swollen joints part, as I have those and they come and go, but I wanted to focus more on the anxiety and panic attacks, and depression. I had always been one of those people who were in total control of their emotions, and now I have no control at all, it really sucks. And when you see a doctor who is not your Rheumatologist and talk about being depressed or anxious, they freak out sometimes. I got this, and thanks for noticing.
8. I have been lucky not to have too much hair loss, but I was a Marine for 10 years of my life, so it is only hair to me, it can go, and I’m fine with that. I have so many dry rashes all over my body, thank you RA, you bitch.
9. I rapidly gained weight and this year I’m losing it at a record rate, up and down, and up and down, ugh.
10. Yep, you have invaded my skin, my joints, and scarring on my lungs, leave my damn thyroid alone. I can’t say you have invaded my brain, but you certainly make things so damn foggy.
11. I don’t have any friends outside my family, no one wants to spend the time to get to know the real me and then learn to deal with the real me. Those that I have called friends, over the years have all disappeared, how sad.
12. I have managed to not have to cancel any big plans, but there are always things on my to-do list that just don’t get done. It took everything I had to make it through my son’s wedding a few years back.
13. I used to thrive on stress, I used to eat that shit for dinner and I enjoyed it. Now I can’t stand the slightest bit of stress and when I’m around it, my RA acts up.
14. I know that medicine can’t cure RA, but hopefully, my injections will slow this train down some. It is currently getting ready to run off the tracks. But, as the letters state, I have a slew of pain pills, sleeping pills and something for my anxiety and depression and every pill carries a host of fun side effects.
15. I don’t know where my RA came from, but I have had several lengthy infections that were treated with long periods of antibiotics, but then where isn’t important. And god, I hope it isn’t hereditary, as my daughter already has my fibromyalgia, I hope she doesn’t get my RA too. I’m so sorry that at times I can’t even look my daughter in the eyes, knowing that I did this to her.
16. You have roped in other parts of my body, but my cholesterol, gallbladder, and blood sugar are mine (at least for now). You already have high blood pressure, and my heart and for added fun, you took my lungs and recently my voice. I want my shit back damn it.
17. I have shortness of breath and “air hunger”, thank you, I really needed that.
18. My teeth are for shit now, just because of you and the medications to treat the damages you have caused. I look like a freaking meth addict, with my meth mouth, thank you RA, you asshole
19. I have had many doctors tell me to change my diet, exercise more, lose some weight, sleep more, get a sleep study, and take some Tylenol. I have seen so many doctors, and so many specialists, and most of the have no clue. So they dispense useless remedies. One even told me that he doesn’t know so it must be “Joe Average” disease. Nice, just what someone wants, a disease named after themselves. I think I will pass, doc.
20. For me one of the most frustrating parts of all this is, that I can’t do the things that I once did, and I can’t do the things that I want to do today. Right now I have grass that needs mowing and I can’t find the energy to do it. I get off work and make my way home and I’m wiped out. I want to go hiking, but I can’t find the motivation. So many things that I want to do, and I can’t, thank you RA
21. Friends and Family, are tired of hearing about it, but they are the one that starts the conversation by saying how are you feeling today. You asked for it. Most of the time, I lie to them and tell them what they want to hear. It serves no purpose telling them the truth, as they really don’t want to know all that, so “I’m fine” is my go-to answer.
22. Remembering names and faces for me is totally gone. I can walk by my wife of 33 years and forget her name, I can walk by co-workers that I have worked with for 17 years and see their faces, and can’t remember where I know them from. It is so embarrassing, so most of the time I avoid people, just so I don’t have to say “hi”.
23. I hate that most people have no clue what RA is and they associate it with OA. They are two totally different things, really they don’t have much in common. Rheumatoid Arthritis should be Rheumatoid Disease. I hear so many comparisons of, oh, my mother or my grandmother had arthritis she took Tylenol and drank XYZ and she was fine. I don’t blame the person, they just weren’t taught, I know I wasn’t.
24. The worst thing about RA, is you never know what part of your body is going to betray you next. It could be anything since RA can attack any part it really freaking wants to. And if it doesn’t want to attack this week, don’t worry, my medications will. I have the side-effect of being dizzy, mood swings, extreme numbness, brain fog, rotting teeth, bad dreams, and dry mouth like I’m chewing on powder all day long. Then there are the skin problems, some caused by the RA and others being caused by the medications. The loss of appetite has helped me drop close to 40 pounds this year. Switching from Enbrel to Humira seems to have stopped my hair from falling out. It also seems to work better on joint swelling.
So RA, you can go F’ yourself
Not your friend
Joe Average
