Monday, August 20, 2012
For those of you with a chronic pain condition, you'll probably be able to relate to this blog. If not, hopefully you can empathize with those of us who deal with pain on a daily basis and most of it is invisible. If you're looking to read a weight loss or health journey blog, this probably isn't for you! :)
When I was a young girl, I remember being sick a lot and staying home a lot. I was always sore, really tired, had stomach problems, etc. Hmmm...sound like fibromyalgia? Probably. This led me to be anxious and depressed at a very young age, but back then, kids weren't sent to psychologists for things b/c the parents believed kids didn't need it. They'd "snap out of it". What's worse is that I remember the PE teachers, school nurses, and teachers all questioning the reality of my pain. They always had a suspicious look in their eyes when I had to call home for pain relievers or couldn't do something in PE (I also have exercise induced asthma). Kids teased me too. It was awful. I'm sure some of you can relate.
Fast forward 30 years and here I am, still in pain, dealing with invisible illnesses and other things. Yes, the pain is real. If anything, I lie to look more normal than I am. I put that mask on to make myself seem better than I am so I don't have to explain why I can't do something.
I DO know that I am going to believe my son. He's 12 and has been diagnosed with chronic knee pain. After several injuries in the fall, a major one to both knees in Jan., and another small incident in Jan., his knees have run their course. He was diagnosed with Osgood-Schlatter's in 5th gr due to his growing so quickly. (He starts 7th gr. this week) On May 6, for no apparent reason, he had a sharp pain in both knees and within an hour, they were both swollen and he could barely walk. The next day we were off to the ortho who told us to get some crutches so he could walk without help, take some anti-inflam pills, and stay home from school for a few days. Oh, and see a ped rheum (only avail at Children's Hospital in Chicago). Weeks later, we got in to see her, she ran 20 blood tests, and everything was normal - no lupus, arthritis, etc. Great news! But, still didn't explain the pain. She recommended a few other places to go, and we did. I finally asked her what his diagnosis is and she said "chronic knee pain mostly related to his patellar tendon". Well, THAT's helpful! NOT! We finally found a chiro in the suburbs who, within 10 min, took a few xrays and found a big problem. My son's hips are torqued and crooked, pulling the muscles to his knees so tightly that his kneecaps were off center, thus irritating everything there. Also, he found that my son has scoliosis.
So after going to PT 3xs a week every week since the end of June, he's doing better, but not 100%. I really hoped he'd be at a better point by now, but I'm also glad that he's progressing. Here's the thing though, I have to get a special letter from our MD to take to the school so he can use the elevator in the bldg (he'll have to go up 23 stairs 10xs a day), get out of classes a few min. early so he can make it to his classes on time, have modified PE, and be excused if he misses days for appts. or flare ups.
This scares me to death! I know it's silly, but I feel like that little kid whom no body believed. I don't want my son to get that feeling. I want him to be confident and like school! Anyone with an invisible illness knows what it's like to have people look at you and you know they're thinking, "he/she doesn't look sick. just trying to get attention!". I now have to go into the school and confront the nurse, who doesn't know him at all, and try to convince her that he needs some extra help to make it through the day. I'm so afraid I'm going to have to fight for it.
One more thing, Friday I received a letter from my son's jr. hs (from last year, he's changing schools due to boundary line redrawing) saying that he missed too many days last year (due to the knee problems) and now I have to formally meet with the nurse and counselor to go over why he missed all of those days. We never had to do that when we were kids. They used to believe parents. Thankfully, there are dr. notes in that file from just about every dr. we saw, explaining that he was with them. It just bugs me that I have to go in and defend every single day. If he has to miss even 1 day this year, I have to have a dr's note explaining why he's gone. So if he gets a migraine or something, there has to be a dr's note involved. Can you believe that?? I have a feeling that every year from now on (or at least for quite a while), he'll be missing school due to his chronic pain. I feel awful that he has this, but what am I supposed to do? I can relate to him in so many ways. I'm afraid I'm projecting my worries about pain onto his situation.
For those of you with pain, how would you handle this? I've just been sick worrying about this whole ordeal. This leads to more pain, less sleep, which leads to emotional eating, etc. See the downward spiral? I'm going to be a nervous wreck when I have to talk to these people. I know I need to be strong and not show my son how I really feel, but I don't know where to find the strength. I'm exhausted just thinking about it and picturing how it could go. I know I probably shouldn't be thinking about it to this extent, but I want to be ready for it when it comes. My hubby said he'd take care of it, but he'd have to take the day off of work, and I don't think he can fully relate to the situation.
So, after reading all of that, anyone have some helpful advice??? Do you have a child with a chronic pain issue? I just need some positive vibes right now. Part of this will take place tomorrow and some will take place later in the week. Thank you all for your ongoing support in my health journey. It's just kind of hold for now until all of this gets straightened out.