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...
Its been over a year since I was diagnosed with RA but my symptoms have been plaguing me for several years. It wasn't until I experienced what I now know of as a flare over a year ago, that I discovered that this plague is. Yes, I am better than a year ago but still have flares and today is certainly one of them. The fatigue i experience is severe and i just go to bed on days like today. Several areas of joint pain are making sleeping difficult. As i lay here and listen to my family i feel alone. They are here for me and I love them for it but I feel alone. I guess its accepting that I have this disease and am adding it on top of diabetes too. Managing them both at once is difficult.
I am frustrated about the losses I have endured. I miss the life I had. I miss walking my dog..i miss knocking on a door...sounds stupid but its a loss I have. Have a big house that I flat out can't keep up with anymore. Laundry is difficult. Cant vacuum anymore. I miss shopping...cant walk to far without the back stiffness. We are supposed to travel to Hawaii in March. As i listen to the family and the plans they have while we are there? well, I won't be doing much if any of that as I flat out can't.
I have a great job that I won't give up until the time comes that i can't work anymore. At this point, it takes all the energy i have to keep up with it but its mine and I refuse to give up yet. Besides, it has great health insurance and I am blessed beyond blessed to have it and am trying to keep it. By the time I get home however, I am out of steam and go to bed.
Sorry, i will quit whining now. I just wanted to reach out and try to find others and share my frustrations and understand where I am.
I wish all of you health blessings and a nights rest.
Cheri
I am frustrated about the losses I have endured. I miss the life I had. I miss walking my dog..i miss knocking on a door...sounds stupid but its a loss I have. Have a big house that I flat out can't keep up with anymore. Laundry is difficult. Cant vacuum anymore. I miss shopping...cant walk to far without the back stiffness. We are supposed to travel to Hawaii in March. As i listen to the family and the plans they have while we are there? well, I won't be doing much if any of that as I flat out can't.
I have a great job that I won't give up until the time comes that i can't work anymore. At this point, it takes all the energy i have to keep up with it but its mine and I refuse to give up yet. Besides, it has great health insurance and I am blessed beyond blessed to have it and am trying to keep it. By the time I get home however, I am out of steam and go to bed.
Sorry, i will quit whining now. I just wanted to reach out and try to find others and share my frustrations and understand where I am.
I wish all of you health blessings and a nights rest.
Cheri
What I'm wondering is..... it sounds like your flares and the RA are not under control. What meds are you on?
Maybe it is time for a med review w/ your doctor. When my RA is under control my life is much different than when they are not under control.
I was not doing very well in October... flares, pain, swelling, geat amounts of fatigue, etc. The doctor added Arava and now things are better than ever.
What does your doctor have to say?
Yes, now I have limits compared to 5 years ago. And travelin is difficult..
You might want to t hink about checking with your doctor.
Best of luck from someone who understands. xo Sun
Praying that you find your magic bullet soon.
I don't really have any advice to give, but I just wanted to let you know I understand the loss of the person you once were. My life has totally changed, too. I feel like my friends have forgotten me, and family members, some of them, act like they don't give a rip.
I wish you the best!
Be good to yourself and forgive yourself for not being able to do as much. I know that's difficult but things can wait or be done in little steps. That's difficult for me but when I succeed, I feel so much better about everything.
You might feel a bit better for your trip in March. Are you flaring now? Do you need to change any meds? Maybe the warmth of Hawaii will make you feel better.
I hope you feel better soon. We all need to remember we are more than our RA and our worth is not in how much housekeeping we can get done. (I'll be reminding myself of this all day.)
Hugs.
The disease forces us to make changes we do not wish to make. Exhaustion is very hard for others to understand. Simply can't fight it.
Christine gave excellent advice. Once you find the right treatment it will make life a little easier.
In the mean time do what you must for you.
Perhaps going on vacation & doing what's managable. Sometimes getting away & just relaxing is a good thing. I realize so many are not comfortable out of the home environment. Yet there are still good memories to be made.
Knew I was desperate when I missed being able to scrub my own tubs. Independence is what we really miss.
Acceptance is a difficult thing & sometimes it's a day to day basis.
Glad you found this group. Wonderful people who don't mind the whining a bit. As we all do it.
Blessings, Sammy
They are LIVING in the living room and there you are
SICK in the bed room.
Even the separation is so sad. I have lived that same moment over and over, day after day. Everyone feels badly for you and you for them.
You are never going to get those back so focus on what you can do to get the future days back. I'm on Sunvalley's page - find the right medication. Push your doctor to get you moving on an aggressive treatment. You can scale back later. My doctor promised that if I'd just give Enbrel 4 months this round, he'd then add a dmard like plaquenil and once it was stable, get rid of the Enbrel. (IF I WANT) That was so refreshing to know I just needed to give a 4month trial. And now, 6 weeks into it, I'm IN THE LIVING ROOM! I won't quit at 4mos because it's been a gradual improvement. I'll revisit the topic at a year. But by then, I have high hopes to be doing all kinds of fun stuff, even outside the house with my family!
Best of luck to you.
I can so relate to your feelings of frustration and loss, as most of us can. I'm really sorry all of this is happening. I have been diagnosed 1 1/2 years and the next step for me is the biologics such as Embrel, Humira, etc but first we have to get some other things cleared up medically before we can pursue those avenues.In the time since my diagnosis things overall have been going downhill but I cling to the hope that we will hit on the right combination and I can get some life back.
IT is hard for me to admit to myself my limitations. I put myself in situations to where I am having to be somewhere for 12 hours that day and to only get 5 hours sleep when I really need a lot more....then I find myself angry at myself wondering why I push myself so hard. I know it is denial. I love my volunteer work immensely but I get embarrassed that I can't keep up so much with the others and I am constantly having to sit down and rest plus always dropping and spilling things and the mental fog, and itching from my pain meds....It's hard to give into it.
But I cling to the fact that better days are coming. I know that for me, God will use this for good even if I don't understand why. I wish you peace and comfort this evening. A vacation sounds wonderful but I can also understand the worry that you may be dragging the family down, but I'm sure they love you immensely and are just going to be happy having you there with them. Gentle hugs!- Donna
I know how you feel. I was diagnosed last April and like you I have been having symptoms since before that time period. I feel alone too because no one around me has RA and while they know I have it they truly don't know how it makes me feel. I miss having energy and not being in pain and I feel I have lost some friendships because people think it's something I can just snap out of or exercise my way to feeling better. I spend more time in bed but I try to walk and I am even considering water aerobics (even though I can't swim). I do appreciate having this support group available to just be able to talk about experiences with this debilitating disease.