I rarely if ever openly speak about having chronic illness. I honestly don’t feel comfortable and if I’m being completely honest people don’t feel comfortable hearing about either. I’m fairness what can they really say or do for that matter? They care, they want to help if they could but nothing they can do so I avoid the conversation all together for the most part. There are a few people I’ve learned to open up to now that I’m older. I’m grateful for them because I do at times bend there ears too much. They know who they are and although they will never see this I thank them.
I haven’t written on here in years mainly because I’m truly not a writer. I’d like to be but then again I’d like to be many things. I decided to write tonight because I’m tired and I need an avenue to express my thoughts so I can get them out of my head. This is so far off from my normal topics but this post is geared for that new RA patient to someone like myself that has had it almost as long as their entire life. First to the young child that has just been diagnosed life WILL be okay, you AREN'T a freak and you will accomplish anything you set your mind to. That’s the good thing about being diagnosed young. You become stronger mentally as you fight to become stronger physically. Your determination and ability to crush obstacles become heightened. Trust me it does and it will get better. The initial shock of not being able to do things you could do not too long ago is crushing. I know, I remember. The anger I had inside me lasted for years. I wouldn’t even say the words of what I had. Hell I wouldn’t admit I had it so why say it. I hated people asking how I was feeling or how I was doing. I wanted to say how the fuck do you think I’m doing? A few months ago I was playing basketball, baseball, riding bikes doing cartwheels, backbends, front walkovers you name it. Now I’m going to doctors every week, getting needles (blood test but I’m scared of needles so being dramatic). but I hated getting blood work so much that I would start begging not to make me go days before my next appointment , driving time the appointment, in the waiting room until finally I was back in the the exam room, l didn’t go down without a fight so like clockwork I’d walk in, hide the needle and then tell my mother to take me home. Finally graduated to every other week and then to every few months and so on. I did have to see physical therapist and orthopedics because it was causing some issues in my legs and needed physical therapy from them as well and surgery on both knees. That is not common and hopefully if you were diagnosed you go to doctor no less than monthly. Bsck then things were different and all they gave you was to take 16-20 aspirin a day. Yeah crazy, right? So I was the only kid I knew with this weird illness and now drinking mylanta in my cereal for bleeding ulcers because the aspirin burned the lining of my stomach out. Hahaha. I was one bitter kid. Things have come a long way since the 70’s. Back then there weren’t many specialist like now but there were a small amount of Rheumatologist. Today I am grateful that there are pediatric doctor’s because my biggest problem with my new life was literally everyone at my doctors office was older than my grandparents. I was so angry if I had the strength to punch something believe me I would have annihilated it. So I used that anger and the want to hit people and things to motivate me to do those dumb ass exercises they had me doing 3 times a day. In the end I did get stronger but no I didn’t hit anyone but along that long road I pictured I was hitting lots of people in my mind during those exercise/PT rounds.
I know it’s scary in the beginning and again if I’m going to be honest I still get scared. First few years were honestly like living in hell. I was so stiff and had zero range of motion, very little muscle strength and couldn’t get in/out of chairs easily so much so most days I needed help. It hurt my wrists when I tried to lean on my hands to pull myself out of a chair so I learned to use my forearms. You learn quickly to find tricks that help you get around the only thing I couldn’t escape was in the morning the brutal pain when I tried to unbend my arms or legs. I would sit there for a while not wanting to even try. It would either hurt like a bitch or not move so I wouldn’t want to even try. So I guess it’s easy to see why I was angry, started my day like that and then off to my mylanta and cereal and first round of aspirin and exercise.
Things do get better honest. Medicine today actually does help and there are many out there. I take methrotrexate and infusions now. Still hate those needles and if I could still hide them I would. Doctor finally wised up and hid them on me. Hahaha
Anyway that’s a bit of how it started and should anyone ever read this and if you are a parent of a child just diagnosed or the child looking for stuff on the internet don’t worry you are going to great. All that shit you go through makes you stronger mentally to deal with just about anything, your pain tolerance is phenomenal, the ability to adapt is amazing and you do not care about nonsense. So like I said at the start there is an upside to getting it so young. I’m not sure if I will write more but I’m hoping to. Going through a lot with it right now and that’s what brought me back to here. My plan was to write about now/today and what my life is really like. The stuff I still don’t share, the fears, the frustration, the everyone has an opinion or even better a cure, the “friends” that stop calling/think I’m exaggerating, making excuses, looking for attention. That might just be my fucking favorite one. Attention??? No I don’t want attention I want to hide, I want to be like everyone else. I’m not even like normal people with RA. A side affect is unexplained weight loss...weight loss? Not me the bigger the flare up the bigger I get. No I’m not eating gallons of ice cream etc it fills with fluids and inflammation and I’m mortified by it. Nobody really believes that, I do get those few that want to and say they do to be supportive though. I’m actually going to attach pictures to shoe what I mean. Again very sure nobody but I will be seeing this but I need to get this out of my head so I can fight again. I’m tired and I’m losing the will to fight and it’s making me sicker. It’s now into my nerves and tendons but the doctors don’t tell you the infusions etc do not help with that. I just helps with the progression of joint damage. Which is good but now I have a lot of nerve pain and damage and I’m getting angry again. Problem is I’m no longer a kid so I have to deal with my anger in a healthy way and address all the physical issues so I can live again. I will say if you are in my shoes and are seeing this your mind is the best medicine hands down. When I was younger until recently my will was so strong for years people didn’t know anything. The days of people asking what happened because I limped it’s are you okay what did you do to yourself were very limited if at all. Again so here in am writing about it so I can find my will, find my fight and kick ads on this shit again. I’m going to stop here and I hope I continue coming back as a form of PT (PT of the brain) so I can clear the way to focus on my will again.
Quick note on my sideliner cherubs I’m doing well on that end. Taking pictures without fear of what anyone thinks of them. Yes they are taken by an Amateur but they are my vision and when my vision is excited like I envisioned it I don’t care I am uneducated I’m finally happy that God gave me enough to get the job done and tripods for when I cannot hold the camera 🤙
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