Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hi everyone, I kinda just have to get this out. So my RA is considered inactive, but the cold weather has just been really sucky. My jaw has been killing me, and if not it just aches and hurts to touch. My mom and sister both have fibromyalgia and I'm starting to get a lot of fibro symptoms as well. Like pressure points, widespread muscle pain, more pain in general, etc. I know these chronic diseases overlap quite a bit so this is pretty understandable. My RA has been pretty controlled as far as pain via Cimzia, though the fatigue never really has gotten better. But now I'm getting pain, fatigue, and these new symptoms and its just annoying the bejesus out of me. Its the last day of thanksgiving break and the thought of going back to school just makes me want to cry. An 8 hour day five days a week plus homework and anything else just does not work anymore. I lose sleep, I get stressed out, and it seems almost impossible to get better. I have no free time unless I don't feel well enough to do my homework, which is about 60% of the time. I just feel like I'm fighting a losing battle, I'm not even halfway through the school year and it just seems hopeless. My school is extremely inefficient and I already miss like at least one day of school a week. Its so hard to get in a routine of any kind that doesn't involve just missing a day of school consistently, which I don't think is an option. I have a 504 so I can turn stuff in late if I need to, which helps. Its also extremely frustrating when the majority of the people around you don't understand what you're actually going through or just aren't mature enough to comprehend the severity of some issues. I'm sick of having to explain to people why I wasn't at school the day before and why I'm not taking the test at the same time. I know most of them are being nice but honestly its hard to keep my privacy with everyone asking me what my autoimmune disease symptoms are. I mean come on, give me some privacy. Its just so frustrating going to school and being around people who are very immature when you're dealing with something like this. I just want to do everything I can to get healthy and I can't do that because of something I'm forced to go to. I love learning so its really sad that I'm not liking school lately. Any suggestions? I see my rheumy in two weeks so I'll let him know what's going on then.
Is a 504 what is called an IEP (individualized educational program) in other areas? Gives you the legal right to adapt the school requirements to your needs? If so, having that in place is huge, and it sounds like you are not afraid to use it.
Are you getting crap from your teachers as well as students? Privacy is important, and even more so to teens, but it sounds like you do need to find a way to talk about this. As you may know, stay away from the word "arthritis" unless you want stories about everyone's grandmother's little finger, being told you're too young for that, and everyone's kale recipes and home remedies. Can you develop a twenty-five-words-or-less description mentioning chronic pain, fatigue, and joint damage?
I don't know if you are familiar with the RAWarrior.com website. (If not, you should be. Huge amounts of reliable information.) That site's proprietor suggests the term Rheumatoid Disease, as it's not just joints.
As far as school goes, public high schools work well for the majority of kids, but they can be unbearable for the outliers. Are there any options? Good charter schools in your district? Any programs within the school you are in to tweak your hours? When you don't feel well it's hard to just get in line and say moo, and that's often the expectation.
You sound like you like and trust your rheumy. If he has more than a couple of pediatric patients he has dealt with this before. I hope he has some good advice for you. Is there a school nurse who can help run interference for you?
High school is an endurance event. As a soph, I'm sure the end is nowhere in sight, but this will end, and there is life on the other side, with many more choices (as you probably know).