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...
I have to ask. It's almost one of those things where you know it has but you just can't put a finger on it.
What prompted me to really think about it was the way my husband likes to tease me. My big tease now is the whole selling of my horse deal. Two years ago when I bought her the minute I brought her home he told me I could take her back and get another if I wanted. I was livid and hurt he had no faith in my abilities as the horse was "green" still in training and doubted I could handle her. She is not a confident horse but needs a confident rider. I was up for the challenge. Here we are two years later and I'm selling her because I am no longer capable of the challenge due to the RA. She is too much horse. He keeps laughing and saying "I told you so" which to me is mean. I tell him I would not be selling her if I did not have RA. When he does this it's a nasty reminder that I am not okay anymore and will never be okay again. Not in the way I was before. I am very hurt by this.
So the only way I can explain how it has changed me now is I am fragile. I don't mean physically but mentally and emotionally. I think we are all physically fragile in our own different ways.
I tend to go to bed a lot earlier and I get sleepy earlier...or is that age creeping up? lol
My balance is really wacked. I find myself having to catch myself from falling over...like picking up something off the floor. Grabbing an item in the shower etc.
I realize how much I took for granted....opening a door knob!
I now have "good days and bad days" rather than just the same everyday.
I am quicker to anger. Maybe that's menopause. lol
The longer I have RA the easier it is becoming to accept it.
How about you all? How has it changed you? What do you want to scream at your family? What do you want them to know? Once we are past the whoa is me it seems to make you a little stronger. Anyone else get that or feel that?
One thing I have found is the more we discuss the way we feel on both good and bad days the more we feel like's it's not all in our heads. Each case is different. Each one of us is different.
I guess we all have this need to not feel alone.
What prompted me to really think about it was the way my husband likes to tease me. My big tease now is the whole selling of my horse deal. Two years ago when I bought her the minute I brought her home he told me I could take her back and get another if I wanted. I was livid and hurt he had no faith in my abilities as the horse was "green" still in training and doubted I could handle her. She is not a confident horse but needs a confident rider. I was up for the challenge. Here we are two years later and I'm selling her because I am no longer capable of the challenge due to the RA. She is too much horse. He keeps laughing and saying "I told you so" which to me is mean. I tell him I would not be selling her if I did not have RA. When he does this it's a nasty reminder that I am not okay anymore and will never be okay again. Not in the way I was before. I am very hurt by this.
So the only way I can explain how it has changed me now is I am fragile. I don't mean physically but mentally and emotionally. I think we are all physically fragile in our own different ways.
I tend to go to bed a lot earlier and I get sleepy earlier...or is that age creeping up? lol
My balance is really wacked. I find myself having to catch myself from falling over...like picking up something off the floor. Grabbing an item in the shower etc.
I realize how much I took for granted....opening a door knob!
I now have "good days and bad days" rather than just the same everyday.
I am quicker to anger. Maybe that's menopause. lol
The longer I have RA the easier it is becoming to accept it.
How about you all? How has it changed you? What do you want to scream at your family? What do you want them to know? Once we are past the whoa is me it seems to make you a little stronger. Anyone else get that or feel that?
One thing I have found is the more we discuss the way we feel on both good and bad days the more we feel like's it's not all in our heads. Each case is different. Each one of us is different.
I guess we all have this need to not feel alone.
I've always thought that I had two purposes: 1) to procreate and continue the species 2) to be kind, smart and generous with others to maybe leave a lasting example of goodness. #1 is done with three female children and #2 is on going to the end.
If I spend my time living in the past (Jethro Tull song BTW) it just pisses me off which ruins my #2. I move forward until I can move no more and then I will turn to dust.
" I'm pretty sure RA has turned me into a hypochondriac "
I 2nd that assessment! Every little creek, bump, ping or ding my body goes through I'm pausing like a dog who just heard a weird sound! LOL!
Now I am on so many prescription medications and supplements that I often lose count. Because of the medications I am often sick more than I am healthy.
I am no longer the fun-loving, energetic young adult I used to be. I suffer from depression due to the RA and have a hard time doing many things for myself.
One of the hardest things I have to deal with is the pain. I was never good with pain and now live everyday in constant pain. I've gotten good at hiding my level of pain but my tolerance is still quite low.
I think my confidence fell a lot when I had to get a handicap parking permit at the age of nineteen because I can't walk any distance anymore.
I can't talk to my family about how I am feeling on my "bad days" as they don't understand. As much as they try to tell me they do they will never be able to. My friends at college are easier to talk to as they don't try to understand but are simply a sounding board for me to vent to and sometimes just a shoulder to cry on when the days are too bad.
There are a lot of positives that came out of this. I realized that it's better to live in the now and so I am much more adventurous. I don't know how much longer my joints will allow me to do things. I'm working on my hot air balloon piloting license knowing that will never be taken from me. I try to attend as many events and concerts as I can (when the RA allows) and I'm always trying to live my life with a better outlook. I can't think about what is going to be but what is.
I am learning by force to be more in the moment, mindful. There's no choice. When a moment comes that IT is not making me miserable i notice, i enjoy it, then i lement its passing.
I still remember what its like to sleep peacfully. Now i just watch my husband sleep and wish i could. The person i was, is dead, just a memory.
I am a PT. So I have always been patient and very empathic with the elderly and functionally impaired. Now i am even more so.
Im just so sad though. I want my life back.
So, it changed me. It killed me. I'm someone else now, someone i dont want to be. I used to enjoy my work, my carreer. Now i spend every day wishing my life away. If i could fast fwd 15 years tomorrow i would. Im 46 and i feel 60.
This person i am now is not real. Its a shell. Looks alot like the other one so, no one else can even tell.
I have not had it long...or heck, maybe I have and didn't know it.
Sally...Thanks for the positives.
And I must add what a huge positive this forum is. I think it gives many of us what we lack at home....the support and understanding of who we are now and what we have.
Yeah, I also get the hypochondriac thing. :)
I try to be stoic around family. I don't like the "you remind me of your Mother now" comments from family. She has RA. I don't want to show weakness. But boy am I quick to show anger if they really get under my skin for lack of support or understanding. I threw a whole plastic tub of brand new salsa across the kitchen and made a mess one morning. That was my fave salsa! But they pissed me off.
They see it as weakness or maybe an excuse. Or at least that's how my eye's see it through theirs.