Tag Archives: rheumatoid arthritis

Unanswered Questions… Mystery Bruises

Posted in arthritis, chronicpain, JRA, JRA/MCTD, Lupus, MCTD, rheumatoid arthritis by

Nothing really new to post about except for my frustration. It seems that too many questions go unanswered. Last week I woke up with bruises covering my arms. They were big red circles that hurt to touch and at times were raised. One doctor (not my doctor) called me today accusing me of being out in the sun too long without sunblock. This is not the case, I was in school the day before I woke up with these spots! I explained this to her and my question was still unanswered… why did I get these bruises in the first place? Could it have been a reaction to the cellcept, which is the newest medicine we’ve added to my treatment plan? We still don’t know! And now the bruises are nearly gone, so there’s nothing left for the doctors to even look at. We took pictures over the weekend and sent them and now today we get a call that they want to see me… Well your a little late, the mystery bruises are gone… and forgotten? I hope… I hope this doesn’t become a regular occurrence. I hope it doesn’t come back ever again, because it was very painful.

I hate unanswered questions, I’m a very controlling person, I like to know everything that’s going on at all times, and this is out of my control. There’s nothing I can do about it, but I at least wish I knew what it was so I could prevent it from happening again or so the doctor could adjust my dosage of medicine.

Bye bye for now mystery bruises!

Talking to Friends about your MCTD, JRA, etc.

Posted in arthritis, chronicpain, JRA, JRA/MCTD, MCTD, rheumatoid arthritis by

The look on people’s faces when you try to explain things to them are always the best. They range from “oh my goodness that is the craziest thing I ever heard” to “I have no idea what you’re talking about so I’m just gonna nod”.

I’ve been in situations with friends who get very emotional with topics such as my disease. They get really sad when we talk about and turn it in to a big deal when it doesn’t really need to be. Friends like this, I tell them the bare minimum. “Oh yea I had to go to the doctors today, just a little sick”… Meanwhile I’m having a severe, rare reaction to Orencia. I just told them what I had to and felt comfortable with, after I got better I told them what happened but at the time they didn’t need to know.

Then there’s the people who have absolutely not a single medical word in their vocabulary. These conversations are difficult because they seem concerned but at the same time you know that they have no idea what you’re saying.
I also have friends who shut down when we talk about it, these are the friends who stress a lot, everyone has different ways of dealing with things.

Tips for telling friends:
1. Inform all your friends of your condition, if they’re true friends they’ll act concerned, if not they’re not true friends
2. Tell them in the simplest
way possible. Use easier terms, not everyone is practically a doctor like we are (even my mom has been asked if she’s a nurse!).
3. Make sure you assure them that everything will be alright.
4. If you’re going to be out of school make sure you tell them so they don’t worry
5. If you’re comfortable with it just make it an open topic, don’t keep it to your friends… Tell everyone! Your battle against MCTD/JRA everyday should be celebrated. How far you’ve come should be known!
6. Don’t keep them wondering, if you keep people wondering they start assuming things. (Kids in my middle school use to think I was allergic to the sun because I couldn’t go outside at recess)