I Just Can't
I'm Rachel. I too share the "well I guess im just a burden" disease, other known as Rheumatoid Arthritis. I'm 21. Been receiving treatment for a year and a half. I've been seeking answers for 2 1/2 years. It started in my right ankle. I WATCHED it happen. Then it was slowly one knuckle at a time til all three knuckles on each finger were/are swollen and in pain. Three nodes appeared. Slowllllllly grew. My knees... Oh man these knees feel like they've carried a million pounds for a million miles. Wanna know what I did to feel like this? You guessed it NOTHING!! I (we) are so frustrated! Seriously like "CAN ANYONE HEAR ME I SAID OUCH 5000000 times why do you not understand?! I often find myself wishing for the Grinches heart measuring tool to just appear and be able to show my joints so people can see!" And OMG That look people give you when you actually decide to finally say what's wrong with you, all I can think is "What's wrong? WHAT DO YOU MEAN WHATS WRONG?! Other than EVERYTHING." But they'd never understand. They hear me but they don't "feel me". I cried my eyes out reading these forums... This is the first time I haven't felt alone (even though I have my family couple friends, perfect amazingly supportive boyfriend who's been with me every step the past year and a half and our 2 dogs ... You know what I mean). A family member told me "quit using it as a crutch it's like you're becoming the disease I just want YOU back" and all I can think is how selfish of them to say such thing... I more than ANYONE want ME back. I'm so stuck in this stupid "fog" that isn't just a fictional symptom but actually is very real. They started my on methotrexate .... Omg that medicine d*** near killed me. You couldn't even cough on me wrong without me getting sick. Switched to hydroxyq. Now once a month 100mg dose of orencia through infusion. And my god has it helped in so many ways but people expect it to heal me and magically regrow and reheal the already done damage. This treatment is amazing by far but the down fall is I can't stop sleeping. Dishes, showers, making the bed, training the puppy, washing my hair, washing clothes, getting up out of a chair after simply sitting is still so exhausting. I'm having a terrible flare up now. I just received my 5th infusion yesterday and my dose was upped (which is what's supposed to happen to get your body used to the medicine started at 25 mg) I'm 120 pounds and 5'10 ( have lost 25 pounds past almost year) this is a lot for my body to handle so I basically take a 2-3 day nap after each visit. It wears off about 3-4 days before my next appointment and when that happens I'm RIGHT back to sleep, well if I could sleep an hour straight that is. My boyfriend makes sure everything around house is done so I don't try and get up, apparently I'm no very pleasant those days lol . It's all still hard but I know things are getting better. My Dr is by far the most amazing and compassionate of them all I swear. He's amazing probably my hero. Literally life saving hero. Others may not hear us but it's ok because we have been given the power to hear others pain and story without words or explanations. We are our own super heroes! Sleep well everyone struggle out of bed with a smile!
Side note: I'm only 21 almost 22 and I am very inside with my inner self and body even if I wasn't I know what's going on and don't need anyone to tell me what's wrong with me, I can feel it. I've met a lot of people who when they ask my story and I begin, they immediately interrupt and say they too have RA when they clearly don't even know the beginning of it. Those same people have later on seen me struggle to do something simple and said "omg you ok? What's wrong with you?" Well you have RA shouldn't you know? Please don't over analyze and self diagnose yourself from reading too many horror RA stories. I am so mad and frustrated about things, although I am extremely strong and you will NEVER see me break my smile or slump and drag my feet while I walk even if I'm screaming on the inside. But being young and knowing you've been dealt you hand and you didn't get the ace of spades, can't even quiet shuffle the cards to deal them yourself.. Is awful. I can't stay awake for enough days to have a job. I'm not on pain medicine, sleep medicine, or any other Rx to help me. I miss working and pitching and hiking, climbing, adventures, traveling, "friends", anything that normal people can do I miss it. I just have had to give up a lot to make sure in the long run I can be healthy and live in comfort and happiness.
Have Faith and Remember Karma. What you put out they give back.
