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.
Previously, my thought would have been "thank god, I'll never be like that!" And now my thought is, "Dear god, please don't let me become like that."
That thought rocked my world.
Dana W.
I promise to be nice
Be well
Bluedogs2
Only one change for good-I was the taskmaster and was the type that "did more by noon than most did all day" and liked it that way.
Now by necessity I've had to learn to get by - with whatever is in the house for dinner, not having the perfect gift with the perfect wrapping, letting housework lax. I realized how I stressed about so much that was not of consequence. Also think that could be an age thing, I see older relatives get that way too. Anyway I'm much more easy going.
Other than that all bad and I mean that. I've continued to decline over the last 3 years and in December moved in with my adult children-daughter is a newlywed and I moved from the So California beach to a desert community, because I need the day to day help. I am blessed my kids asked me to come and it caused them distress to not be able to get to me as often as they wanted, but I also can't hide as much as I want to so they won't worry. Now they really know how bad off I am.
My daughter and her husband will start the adoption process soon and really I'm hoping they choose an older child because I don't even trust myself to hold an infant right now. the use of my hands is limited so I'm out on LTD and home with little to nothing to do because my hands can't take it. All we can do is as much as our condition allows, all the positive thinking won't change that and I am a realist. At first I felt embarrassed, its disgraceful in my family to not "walk it off " and overcome, but I know its the disease to blame and not my lacking. Besides my children the rest of the family have "fallen off", they aren't able to handle me so different from myself.
depot
i'm 35 and was diagnosed a bit over two years ago. i think. maybe more? whatever. the fatigue is ridiculous. i tend to nap in the late afternoon or go to bed by 10pm. if i get much less than 8 hours of sleep a day, it affects me.
the pain is a huge thing - i'm not great with pain but have really learned to tolerate more. i'm in constant pain and don't talk about it because no one wants to hear it. nothing has helped - mtx alone, enbrel, humira, xeljanz - none worked. or, i couldn't take them long enough to get them to work because i develop raging respiratory infections.
i'm afraid to plan too far in advance because i never know how i'll feel. october 2014 dh and i went to disney and i was in a wheelchair the entire time. october 2015 we went on a cruise to bermuda and i walked everywhere, including walking down over 80 steps to the crystal caves. i have panic attacks about going out certain places, like concerts or shows or anything fun.
perhaps the biggest thing is that it seems to have changed my skin, how i heal. even though i'm not currently taking any medication for RA - and haven't been for well, well over a year - everything heals different. i'm a big fan of body modification and my last tattoo from july hasn't healed properly. i had a lot of plans for my body as far as tattoos and piercings, and it seems like now they're all sidelined.
I have recognized I am never going to be able to walk far, or even lie in bed without my feet hurting me. Cooking, cleaning and and normal household chores are impossible a lot of days.
Did I mention losing my job? I was on disability, but that was not my choice. I also retrained as a pastor, and I am simply not able to take the physical stress of that job. By stress, I mean getting up in the morning and going to work.
We won't even get into weight gain on prednisone. TWICE! I lost 80 lbs 10 years ago, and I was looking good. Then I had to keep going back on prednisone for every one of the many med failures, and now I have to lose 60 lbs again. Prednisone seems to short circuit my brain, and demand salty food!
I was in good shape before RA. I walked, danced, fished, canoed, and skied. I lost that all for 7 years, Then after being on a good med combo I started working out, doing stretches and weights, and very dedicated bike riding.
Three med failures later, esp. 2015, I am back to starting from scratch. I tried to keep up with working out, but there were times I couldn't get out of bed, let alone lift a weight, or ride my bike. I started again after New Years, but the RA is still not under control enough to do anything. I pay with pain for days, if I push even a bit.
My husband gets very tired of me spending "all my time" at doctors. He doesn't want me to go to the next town, because the special RA clinic with PT and OT will be a waste of time. As long as I can get knee braces that are the right ones, and cheaper than the regular places I will be happy.
Good things - great of Sally to remember!
Getting my MDiv would never have happened if I had not gotten RA.
Raised beds for gardening. I get so much produce, and so easy to work on. Mine are 24 inches high, with about 6 inch boards to sit on, while I weed, plant harvest etc. Great discovery!
I love bike riding. I like it as a child, but I love it even more now. I am holding on winter, but I will go out on the road again. Even if it takes a lot of pain killers to do it!
My kids have always stood by me. My daughter was my caregiver from age 10--15. She learned to care and help people, and became a social worker.
I would still be working right now, if I had not gone on disability and then forced into early retirement. I do appreciate that I don't have to work, on these days that hurt so much. I did work the first 2 years, and it nearly killed me.
I am learning NOT to push through the pain. Still a hard lesson for a Type A person!
I have also been through terrible depression in the early years, and God really helped me trust in him. I don't know if I would have gone my own way all the time, had I not slowed down and listened to his voice.
I had only a few friends before, and now that number has dropped even more. I am rethinking even the couple that are left because they are -- 'suck it up', get over it and drugs/doctors are evil
-- kind of gals.
I spend a lot of time going to doctors; Rheumatologist, Optomologists, Hemotologists/oncologists, Orthopedics, Physical Therapists, possibly a Pulminologists soon, depending on the CT scan in March.
I do not get angry as easily or as often as I use to - there doesn't seem to be much point, does not usually accomplish much. My hands like to play games with me, see if I am paying attention, and somehow things that were in my hand magically fall to the ground - reminding me to hold on to some things with both hands. I am ok, one handed, with larger items, but give me something smaller like a piece of paper or a coffee mug and it can & will visit the floor.
My balance has never been great - see the name 2 leftfeet? That has not changed to much - I never was very coordinated.
Other good things that have come of this. While I ate somewhat healthy when I could, getting organic sometimes, now I am really trying to eat better. I found a freebee app - My Fitness Pal, and I track what I eat. It helps to motivate me.This is not an advertisement everyone. It is free, does not cost a cent. I also bought one of those fitness watch bands that track steps. Again, something to motivate me to move. One of my OCD sisters aims for more than 20,000 steps a day. If I can break 6,000 steps, I am pleased as can be.
For me, what I have learned is that there are 3 kinds of people.
Probably 95% people are NOT really interested in how I am doing.They may care, they may love us, but there really have no interest in knowing what is really going on. (This would be ALL of my family, except my husband).
2% of the people out there care, and are truly curious in what is going on. They are interested, they ask questions, and have an interactive conversation.
3% of the people think any and everything to do with doctors and medicine is not good, will only cause further harm, and only purpose to drugs is to make money for big drug companies.
My medical problems, for the most part, I am OK with. I am, thanks to drugs and doctors, I am doing OK. What I find hurtful and sad are the 95% of the people, and the 3% of the people.
Let's start with the positives:
I immediately became proactive & started working out primarily with weights, ate better, lost weight (20lbs). I believe this has combated most of the RA "fatigue" we get either from RA by itself or sometimes from the medication like MTX!
Negatives:
I've lost friends who just don't care to understand it or just don't get it? Because they see me with the same or even higher activity level they think I'm 100% normal. Yes that' show I carry myself throughout the day & yes my med's thankfully have been doing a wonderful job at curbing about 98% of the pain & stiffness but when I was first on them, they didn't understand why I was always tired on the weekend (that's when I took my MTX). They would say, "Just take a Tylenol for the pain". WRONG OTC if you're taking MTX. The last friend couldn't understand why I couldn't attend his daughters birthday party. I told him it's on the same day I take my meds, & it's the only day I can get all my own errands done before feeling the fatigue from the MTX. He just gave up.
But now I have a choice. I've decided that bad things happen to EVERYONE on this earth. Some people experience the death of their children. Some ppl have cancer. Some ppl die young in car accidents... I'm foolish to think that nothing will ever happen to me that will be difficult.
I now am more sensitive to the needs of others. I have more appreciation for things that I can do in life. I have more patience. I am softer to myself. I have more human expectations of myself and others. I am more thankful than I've ever been. I have better friends than ever before bc the plastic ones left. I now have fewer dreams but I appreciate the smallest of things in life. I have learned that feelings sorry for myself is futile. I can work thru the anger and not let the anger eat me alive. I know I will die an early death in this life. That's okay with me now. I can't run a marathon, but I can send cards to sick people, be kind, be generous, and so many more important things in this life...
I look at life totally different...
Sun
RA has been a humbling experience. I find myself unlocking doors with my right hand because the left hurts too bad.
I find that I am getting better at finding easier ways to do some things. Carrying bags on my arm instead in my hand.
Fragile is one of the changes. I take longer getting to the car after it snows. I don't want to break a bone or hurt a joint that is already hurting.
You are saying some of the same things that I am experiencing. I am determined to do what did before just to find out that I cannot. I I get depressed wondering if I will be able to do what I did so easily before. Hubby fusses at me when I try to do things. He has seen the pain on my face when I push myself.
I have learned to ask for help sometimes. I am constantly worrying about falling since my RA has settled in my hips. I have found that I need to reevaluate what I can do and what I want to do. I still have the occasional pity party usually when no one is around and cry about what I have lost. I try to smile because it is contagious and I want others to be happy when they are with me.
I guess Melly it has to be attitude. Try to have positive people around you. What goes around comes around. Your husband may have an awakening experience and understand your situation better. I strongly believe in karma.
Just 2 examples. My hubs sister found a loop hole in her mothers will.
Now the will was intended to leave any daughter/son in law their spouses portion if he or she pre deceased. Which was the case with my sister in law, my husbands brother passed away after 30 plus years of marriage. 3 out of the 5 chose to keep her portion. Within a year all 3 lost far more then they took. My husband & the one sister who chose to give her what was rightlfully hers lost nothing.
Funny each one said if they could go back they would do the right thing . It tore the family apart.
Second, I've had nasty back & neck problems for some time. Pneumonia hit last year big time. My husband pretty much felt I could deal so kept his social obligations while leaving me to care for our 3 year old grandson. Well 8-9 months later he's hit with sciatic, never has a back problem in his entire life. His words were "there's no way I can live with this pain every day", with in a month he's sick. Really sick. Walks in with a bag of medication after being diagnosed with
Pneumonia. Could not stay out of bed. Talk about Karma? Of course I took good care of him.
That's just 2 examples, had to get that out there.
After taking care of everyone & sending my last daughter off to school I was DXed. Already had chronic pain with spinal issues but With RA kind lost hope of a miracle. Often say having RA with ADHD is a joke.
Exhaustion mixed with restlessness. I never even took a nap, constantly finding something to do. I put off a lot waiting for my last daughter to get settled into her future. I'd never put anything off again if I could go back.
Miss just getting up & going.
Totally struggle with asking for help. Miss being able to keep up. Even miss scrubbing my bath tubs.
I've always stopped to help others, whether hugging a stranger in the grocery line who just lost his wife to paying for someone's script.
So sure I ask why?
Hate medications but realize I'm blessed to have them.
Battle guilt over medical bills.
For the second time through this journey I'm struggling with depression so I'm not the most positive right now. The toughest outside the pain & loses are the need for treatments & meds the rest of my life.
Yet having so many sick with cancer in my life I'm wise enough to appreaciate my life to the best of my ability. I remind myself One day at a time. Still try to help others as in all honesty it helps me.
Like most you find out who your friends are.
I'm OK with that as I only want those who care in my life.
Family even bails. That breaks my heart, never bailed in my life.
I'm still looking for what I'm suppose to learn from all this.
Settling for as many good laughs as I can manage. Laughter is the greatest gift & the best medicine of all.
Appreaciate the small things more then ever.
I'm a work in progress. Missing my old life so much at times it's over whelming. I'm also a chronic airhead, compliments of RA.
So for me grieving is a long long process, yet trying to be grateful.
Karma, I'd not want to be in your husbands shoes (no offense).
I'm sorry, I'm sure giving up your horse is tough. My heart goes out to you.
Sammy