Hi, my Name is Jen,
I hope you all are doing well...
I am out here in rural america. The Sticks, We like to call it. Next to Ft. Riley, an Army Base. My friends work there. I was DX'd with RA on my 37th birthday in October. I took the DX pretty hard, as I am a musician and an artist with a fondness for my horses. I can't really participate in my life as it was just months ago. Everything has changed. It had taken me over 20 years to develop my proficiency at the instrumants I played, and to hone my other talents well. They, of course, no longer exist. Of course there's the pain and other symptoms, and Doctors Doctors and more Doctors... but I had to leave most of my "life" behind, and am trying to learn how to get along with RA just enough to get the bare minimums done. House cleaning etc. (The whole "Spoons" planning thing)...and maybe get some ...well as much possible gardening in on top of it. I don't know anyone in my area with this dis-ease. My rhuematologist is an hour-15 away in another city as we have none here. My mother who is in her 70's is looking after me at the moment ,as this is all still so new. All of my other doctors are in a town 35 minutes away, so we travel alot. So far I've had all the typical aches and pains on the pretty rough side, Leg ulcerations, My gums seem to be rotting up with an infection, The fatigue is the worst part, unbelievable! It Just seems to be a long list of things that just seem to come one right after the other right now. The swelling is under control for the most part now, which I am grateful for.
I need some help learning all about RA and what to expect from day to day. I would very much like to make a few friends too, If I can.
I am a bit afraid of new people, But I am willing to live and learn here.
I hope you all are doing well..
PS.
I have never seen better singles ads in my life!!!
I hope I can find some place to fit in here, I really could use the help. thanks!
Hi Jen and welcome. I too was a musician (piano) and have not been able to play for two years. Occasionally I sit at the piano but after only a song or two hands go crazy.
You mentioned that you want to help people and make them smile. That is exactly what I do for my emotional/spiritual therapy. Even though I can only work with people 1 or 2 hours a week it is amazing how good it makes me feel. I work with female drug and alcohol addicts in our county jail and love it. It is especially rewarding to see them quit for good and learn to live new lives.
I am a 49 yr old wife of 24 yrs with a teenage son still home. Had to quit work 6 yrs ago and am in appeal for SSDI These diseases are the pits but helping others has helped me cope tremendously and my family is awesome. Over two years ago I was "super mom" but of course all of that has changed now. I have found a new and different life living with these diseases.
For me days have constant pain but I am hopeful starting Enbrel this month. I just adjust myself and give in to my body's needs.
You will find many compassionate and knowledgeable people here as well as a lot of info from those who have many years living with RA.
Take care.
Jen, glad you introduced yourself. You do sound very ill at this point. What are the doctors telling you about your condition. If you have infections going on, it is very important to get them under control with antibiotics.
Regarding the loss of your life activities, when they find a good treatment plan, you have a very good chance to regaining some of your skills back. Don't give up hope on that. I've gone through lots of ups and downs where I was pretty non-functional. Then they found something that worked and I bounced back up. Right now, I'm not very functional and I have had to finally quit working. But even with the loss of so many things, for each one we must grieve, you'll find new things to replace them.
Look for new ways to express yourself muscially. And, don't give up on having family in your future. You just may have to work a little harder to find the right people.
It really concerns me what you said about your teeth and the infection and the ulcers on your legs. This can be very serious and you need to call your Rheumy right away. You are also not on that much medication at this point which means there is a lot of hope for better days ahead.
It's hardest in the early days of diagnosis. But please call your doctor.
Those infections especially the gum infection, which tend to have been 'perculating' a long time before they show themselves may be the cause of your troubles. The body can go nuts trying to get rid of something like that. Several people on this board have stated the dental infections were present at the start or just before the start of RA.
See whoever you need to see but get rid of all infections as quick as you can. You might just get well!
Oh Hi.. guess I should not have started off so preachy. Welcome too.
Hello and welcome! This is a wonderful place for support and friendship!
What are they doing for your infected gums and are you on any ra medications yet?
Hi Jen!
Welcome to the boards
I know how hard it is not to be able to do the things you love. I play guitar and can only do so for a few minutes at a time. I still work in my garden but I've learned what my limits are and I stop when my body tells me to now, instead of pushing myself like before.
This is a good place here, welcome.
O'my! I didn't mean to leave you all with the impression that I was going untreated for all of this, The mouth infection is being treated aggressively with penicillin by my dentist, as thats all they want me on for now.(4 times a day) They don't want me on sulfa drugs for the moment. I am still worrying myself alot about it though....I just was cleared of those leg ulcers. It took 7 weeks of pressure wraps and rewraps, But they are finally gone. I have some real scars, but I could care less about the scars, I was worried about the holes in my legs! In the meantime, I found out I had headlice. Even though I live alone and am alone most of the time, I still can't figure out where they came from. It took forever to get rid of them. Over a month. We did everything to the "T" ..and to the extreme..
I really do have a crack bunch of doctors for this mess so far, but they are scattered all over the area.... I was just saying it seemed like one thing after the other was surprizing me in a "not so good" way, and it didn't feel as though it was letting up. I wondered if that was kinda well? normal for this thing. RA. Does it ever calm down? Or is there always a few secondary issues going on, because going to the doctors this often is making me really tired to begin with...
I find it very interesting that alot of people reported mouth infections in the beginning stages of thier treatment. I wonder why that is.. I may have to go hunting for the info... Thats very interesting. I love research..
Bonny, Now?.. I just kind of roll my eyes at this, but I got the first "piano of my own" on my birthday this last year too, of all the things!
I think eventually I will be starting a bit of an e-bay bussiness with selling seeds and bulbs and such. That would be perfect for me, I think.
Deanna, Yes, At this point I am pretty ill and hurt alot. I am being seen by a dentist ,an MD (for the littler stuff and pain management meds), a rhuemy and a psychiatrist right now,The depression is lifting, I was pretty depressed there for a while, the pain is about 50% better than it was, which I also thank God for, I am just worried with the infections and other complications, they just seem to line up to have thier day. The doctors seems pretty comfortable with the treatment and progress, as I am "just" getting used to Methotrexate, The swelling is ALOT better now that I am on it. I suppose you could say I am in that transition period between the drugs and the good affects. The DR.'s seem pretty positive and they really wish I had more patience.
The diagnosis went like this, my MD thought I might have Sjogren's Syndrome so he referred me to a Rhuematologist, The day I went to that doctor, my hands & wrists were swollen VERY large, he noticed the large nodule on my elbow ,That the bottoms of my feet hurt so much i couldn't walk well, or for any distances, and diagnosed me on the spot. I wasn't expecting that. I guess I was lucky to get a diagnosis without years of trying to find out what was wrong. He sent me for tests to confirm, and that was that. He's a very observant guy. Im still "doing" tests as he wants to keep an eye on everything.
Marian,
I kid you not, the next day after I started the pennicillin, I felt energitic. It was the first time in months I had energy. I believe you are right, 100%, Then I got stupid and overdid it physically and stayed up too late aterwards. I'm a believer now!
Rest, take it easy, yes, yes, yes! The next day was horrible. I got too big for me britches.
The better my mouth gets, the more human I feel....So I believe you!
Preachy Is just fine. I need guidance here. That's why I am here. Well, It's one of the reasons.
Micheleb, I am being observed more than anything right at the moment. They have started me on methotrexate, they want to make sure it is being well tolerated before they proceed with more. I am on Duragesic for the pain. it eases it some and I can live with that...I am just at the beginning of this thing and it seems as though it's going slow, but it's really not. I know it could take some time until I'm fairly comfortable in activities, but I would llike to be safe about side effects also.
A few months ago I could hardly walk, I couldn't raise my arms to brush my hair or operate the steering wheel on my truck, so I think I am doing alot better. I just don't realize it all of the time.
Miles2go, I couldn't Identify More...With your last paragraph! I however have too much nerve damage to play guitar at all at the moment. I am having to learn how to listen to my body about when to slow down. That is very hard as I never listened to it before.
I don't know where to begin..but I am going to try...
I hope you all have a good morning,
Thanks for your responses!!!!!
Welcome Jen; I'm sure you'll fit right in here. Hope you'll stick around.