When I first got this RA, I was down for the count, then I seemed to
get a grip on it, then I got to experience the joys of what I think we call a flare-up. Now, I get to look like a faker, limping one day, and not the next....then the next day
I can't lift my arm. On the following day, I wake up and find
that the RA has been busy all night long....making the long trek from
my shoulder back to my foot. I can only imagine what people who see me
(on the bus, for example) must think. Something like, "What's up with
this person? Do she have a real limp, or is she faking? Geez, she
must have some mental disorder!"
I seem to be afflicted with medical conditions that are invisible to
everyone else. I get migrane headaches too. And I have had ADHD my
entire life (yes, it's real, yes, it's weird, and yes, I have two of
three sons with it, but they refure to take meds). Anyways, I almost
felt like "showing off" my swollen knee, and the morning I woke up with
my arm grotesquely swollen from the elbow to the knuckles on my
fingers---(that one was weird! I, and even the emergency room folks
thought it was broken--it wasn't, try to guess what caused it?) I felt
this weird sense of satisfaction.... Hmmm...maybe I do have a mental
condition. I have had great results with Humira and methotrexate, but I
am afraid of getting lymphoma....Oh, and i just thought of something,
there is probably no external symptoms of lymphoma, huh?
Oh, and one last thing, I know that I will be getting external symptoms
from the RA, and I am in no hurry to get them...(I do have a nodule on
one toe....I like to paint it, along with my toenails... I'm just
kidding, of course.
It is my experience that most of the rest of the world pays way less attention to me than I suppose. If I think they care about whether I limp or not, that has more to do with me being self-absorbed at the moment than it does with them actually caring one way or the other.
Jeanne
Dear pitpat,
This whole RA business and the other conditions that seem to go with it are awlful. I live 3000 miles from most of my family and for years they have thought that I am a complete hypocondriac. That's because most of the problems. the pain, OA, fibromyalgia, endometriosis, Sjogren's syndrome and now RA are not that visible. If they are, like you said, they come and go cropping up in different places everyday. Yesterday I got around with a cane and I almost felt validated. Today i don't seem to need one but my jaw is aching from TMJ. The people here on the board understand because they are going through exactly the same thing. The one thing you can count on with RA is its unpredictability. That's why is's so hard to hold down a job. I wouldn't count on too much understanding from those who don't have it. This is a wonderful place to come, gripe, and get information from those who know firsthand what you're going through/
Pitpat, I had to read your post b/c I have ADHD and migrains too, and I do the same thing as you...one day I am great the next not so much. I look like a faker a phoney and a nut case. I dont know the answer to it, but I totally know where you are coming from. I am also on MTX and Humira...not so good of results though. Know what ya'll mean,my boss at work thinks its in my head that I'm trying to get symphany or get out of work,but I am a work aholic have always been,it keeps me busyNow that sucks....having someone like that think it is your head. If only they could walk a mile in your shoes. Doesnt that just make you so mad?Sometimes, I got better. Sometimes, I got worse. There were times when I couldn't work for months and now I can't work at all. By the end, I was in so much pain, that those working close to me couldn't hardly bear to see it. So, they distanced themselves. I think it was easier for them to see me go. And, in a way, it made it easier for me to leave.
I've had all the comments, "get some exercise," "try this alternative," on and on. But this is my illness and I own it. It doesn't own me.
If people can't see my problem, like at the grocery store and I need help lifting things or getting them out to the car, I tell them so. I'll even explain that I have bad shoulders, or bad knees. Really, they will help me out.
Out in public, people don't realize. Most of the time, even with the cane, they practically run me over. They are just too self-involved to notice.
What people have noticed over time, is how hard I have tried to make it through. Individuals would come up to me and tell me how much they admired me. That wiped away all those nasty remarks thoughtless people have made.
My kids still think I'm invinceable, even though they realize how sick I am. My son thinks I'm the bravest, strongest woman in the world. He believes some day I'll return to work.
So, you may think others think unkindly towards you and it might be true. But those are shallow people with small hearts. You are not going to collect the opinions of such small minds. No, look to those who have good words and good deeds to add to your life. Getting through this illness is more than just medicines. It is taking care of your inner self, nourishing you inside with all kinds of good things. That includes having good thoughts about you, allowing good words to come your way.
I had to shut a lot of my family out of my life for a long time because they were so callous about my illness. Now, some of them have been through their own problems. And, they can be more supportive and compassionate. But I wouldn't allow them in to say those awful things to me. That was destructive and only made me more ill.
Be good to yourselves. Tell yourself you did good today because you did make it through in spite of all the pain and fatigue. Rest when you need to rest. Do something fun because for once you have energy. Hug the people you love. Listen to long conversations. Indulge your life with simple pleasures.
Because life is short and very precisous. RA can steal parts of it, but not all.
Deanna, you give the most wonderful advice to all of us. Are you able to apply it to yourself? I too have given advice to people and I find it very hard to use that same advice on myself.
Thank you ... I was feeling quite alone with the problems that I have had with my parents and 2 brothers. I at first thought that they just didn't care or want to be bothered. But, you made me think in a different light. They probably just couldn't deal with the thought and distanced themselves (although it's been 4 almost 5 years since I have talked or had any type of communication with them). Thank you for giving me another way of looking at things.
You are VERY right in the attitude that if it makes us sicker or stresses us out too much it's sometimes not worth it. I would much rather hurt myself for something that I truly enjoyed than a battle of words or slinging of mud.
Thank you all once again !!!!!