I have a hard time comprehending how fast RA took over my life. The holidays always make me reflective.
I can barely do anything I used to do for fun and work. I first got sick, Sept. 04, hospitalized then diagnosed May. 05. I have attempted to work three times since then. I regularly need a cane and have a hard time driving.
Can anyone relate to this? Is it always worse in the beginning? I was at the peak of good health even though I was 48. Overnight my life was changed. Will it get better? What are the odds? How about you? I would like to hear your stories.
I got sick in Jan 05 at 47 yrs old and by Oct 05 needed a cane and applied for SSDI, still in appeal process. Mostly quit driving at that time as well and yesterday doc wrote Rx for a walkabout. I can use it as a walker or sit in it to be pushed, lol.
I worked for 30 yrs, tood care of hubby and son, did flower gardening and took care of the yard, walked 2 miles a day and cooked mostly from scratch all of our meals.
I am blessed though as mother moved next door (we always think that we will take care of our moms and it became the other way around), hubby is retired and has his own part time business and my teenage son is wonderful in helping me. Hubby pays for house cleaning twice a month and my pastor and family lived next door as well and will come to the rescue anytime.
So though there is a tons of things I can no longer do I have read posts that make me cry for the person who doesn't have the support I am so blessed to have.
Take care,
Bonny, It sounds like we have had similar experiences. I am so glad you have so much support. Most of my support is right here but I do have a family that loves me that will eventually understand RA I was very mild for many years and then moved to AZ where I continued to be very mild with little to no flares. It wasn't until we moved back to the midwest that good ole Arthur came back with a vengence. I went from taking just ibuprofen to biologics within a couple of months. I am going to have my knee replaced after the holidays. I don't do as much as I used to, but will do things like hike etc. when I am feeling good and will rest afterwards. Although I am limited on my driving I am looking forward to being the passenger for some 4x4 fun in the snow this winter!
I feel arthritis waxes and wanes. Depends on your body and the circumstances of your life at any given moment. I hope and pray everyday that it will get better. I try to keep positive thoughts going that I will be better so I can enjoy some winter activities.
I use my cane everywhere I go. I move better and faster with it. I hate shopping so the faster I get it done the faster I am outta there!
I am lucky enough to have a top notch support system with my immediate family. Without them, I wouldn't know what I would do.
Liz, You go girl. Live life to the fullest. Your family support is deserved. You have handled the progression of this disease with a good attitude. I learn from you.I'm on my second leg of drugs as the first leg (methotrexate and plaqunil) didn't work. I'm taking sulfasalazine and I'm waiting for my insurance to tell me what biologic they'll allow. I'll know when I see the rheumy next week.
For years I lifted weights 3-4 times a week. I speed walked at least 4 miles a day. Right now I can't walk down the street without extreme pain in my left foot. (MRI on Friday) But, after reading these boards, I'm thankful it's not worse than it is. All I want is to be able to hold my grandson (who will be born end of January 2007) without dropping him!!! I seem to drop EVERYTHING lately.
I was diagnosed in summer of 2003 at age 47 and rapidly degenerated as the Rheumy tried various drugs.
Pain was in my hands/arms/elbows/shoulders/neck/jaw/ankles and bottom of my feet. I managed to keep working although my entire focus didnt seem to be on my job. Fortunately for me I can do my job in my sleep and worked thru the pain. Many nights Id come home and literally crumple into bed. Methotrexate in pill form worked like magic for me. I never got sick or upset with the drug and within 3 weeks swelling was down and I had no joint pain...a year later I seemed to be in complete remission and my Rheumy and I decided to see if we had shut the disease off or not. I stayed drug free for about 9 months and was in excellent spirits thinking it was finished.
In the beginning I thought up a multiple of reasons that were causing my stiffness, swelling, and tenderness.
Having always been physically active, played sports all my life, worked hard in Chemical Refineries for 25 years, and enjoying a very active and physical homelife as well. I started with all the home remedies that would lighten the pain, swelling, and push thru the problems with time and patience.
In Dec. 2001, we were Hit Head - On: by A Drunk Driver, causing severe pain, stiffness, and mostly a painful recovery for 16 months.
Shortly after, we noticed the Swelling of Bursitis Sac of Left Elbow, (Size of a Baseball on my Elbow) then my Hands would swell beyond use, and my feet felt like I was walking on Rocks. There would be times, I couldn't lift my arms over my head to get dressed, and times I tried to get up and down, only to realize my Knees were not going to cooperate!!
Went to Primary Doctor, ran tests for RA, and approx. 2 Years from the Head - On Accident: I was diagnosed with RA. Nodules Present, Loss of Range of Motion in Both Hands, Radiating heat from Knees and Lower Back pain.
See a RA Specialist and start Meds., Prednisone, Methotrexate, Humara, Folic Acid, This was late in 2002,
By early 2006: My life has taken a heck of a turn!!! I now am on Remicade, and other Bios, and yet my quality of life is very limited. Rest, Rest, Little or no Social life, Inability to perform my Career, Hard to Drive, and hard to enjoy much else.
Now it is September of 2006, and I have Taken Short term Disability from Work, and seriously considering Long Term. I have decided it is not fair to abuse and continue the toll on my body and joints.
Currently I have no Use of Left Hand (Dominate Hand) in Physical Therapy, as it has just froze up from BONE Erosion. Taking it easy, modified my activities, still wake up at 5:00Am though..
Thinking back, RA and Fibromyalgia, diagnoised early 2006), I have seen a drastic decline in my health. The RA, doesn't leave so much for the Fibromyalgia to destry or effect. I wonder what each day may bring!
But, I will keep trying to overcome the obstacles, and take the different meds. so long as the Insurance stays in effect.
Now I have a question, does the Insurance continue with Long Term Disability, I know I can still receive my reduced Salary(60%), but with STD I have kept my Insurance and only pay the Small Premium as if I were active at my job. But I am not sure about Long Term Disability, and if not, I may proceed to SSI.?????
Good Luck all, think positive, allow yourself the joys of life in what ever form they present themselves, cause somewhere, someone else has it worse off than we do!!!! God Bless them......
These diseases are so destructive to all facets of our lives but as many of you stated we WILL go on and live life to the best of our abilities.
tp215 - I worked in payroll and human resources prior to quiting due to RA and during short or long term disability you are still considered "employed" and should pay the premium that you paid while working. I am in the 2nd appeal for SSDI and after award Medicare takes a year to kick in. Not sure if the year considers all of the waiting time to receive SSDI but some states have Medicaid based on your household income that might help for the interim time.
Take care,
I don't feel so alone. Especially for those of you who were active, I know you know how difficult it is. It has been two years and I still find myself focusing on the past and getting very depressed.
I also had signs earlier than my onset date. When my daughter was diagnosed schizophrenic, I would wake up and could not walk on my feet. I went to a doctor and he said you should see a rheumatologist. You have a very high RA factor. I was involved my daughter's care and treatment, I did not investigate it. I just thought it was plain old "arthritis". After about six months it went away but would come back off and on. I just thought my feet were damage as I have hiked all my life and was determined to walk through the pain. Then in Sept. 2004, I had the root canal from hell, like your car accident, major shock to the body, would not heal, and during that I had an RA flare that put me in the hospital.
I was not diagnosed until 6 months later. I think RA is absolutely connected to trauma to the body, I have heard many people say dental work brought it on, which may be the bacteria that is released when you have major dental work and stress. I was a wreck when my daughter was diagnosed Schizonphrenic. I was so focused on her, I got passed it, but I think that was the initial onset.
It is good to hear your stories as I feel so alone sometimes. My RA has been so aggressive. Sometimes I feel like I have the most aggressive RA on the board but now I realize I don't, I just don't handle it well. The doctors only have bad news for me. I get scared and my self esteem is very hard to keep. I am glad I am not alone even though I would not wish this on anyone.
Thanks for your stories.
Like you I've had off and on signs for years that I know know were precursors to the RA. Like you, I'd stand up out of bed and barely be able to walk on my feet, but I'd dismiss it and move on. Too much other stuff going on in life and it just didn't seem that important. Until it woke up like a big bear out of hibernation.
I don't blame you for getting scared and down with the aggressive RA. It would be odd if you didn't get scared and down. (The problem is how to not stay scared and down, isn't it? And it seems to me, you work pretty hard to manage where you and get back up to a better level.)
I get scared and down and I'm still at the baby stuff stages. I haven't had to give up a career, make a major move, have my marriage tested or care for a disabled grown child in the midst of RA. You have every right to feel overwhelmed by this. And yet you never let yourself stay in the hopeless feelings. You're always looking around, reaching out, hanging in. Have you counted up the points for that, or are you just counting pointes "against" for feeling scared and down?
I think the rule is we get to get scared and down, and we don't have to be ashamed of it. Sure, we're going to feel ashamed of it anyway at times. But the rules don't require it!
Now there's a project for you---a rulebook for RA.
I can't really figure out how fast it came on.
In mid 1995, I suddenly couldn't use either thumb. I was splinted for a while and given pred for a while, then it went away. Every now and then my hands would ache a bit. It slowly got worse but I was never treated with anythiing stronger than Indomethacin. My pcp kind of danced around a diagnosis of RA, and did the blood tests, but nothing was conclusive. it was like "well I think its RA, but not bad, so we wont worry"
At the time I was taking long walks with Mark, working at a job I loved, driving huge distances, and visiting Australia. In 2001 we separated and I was back to substitute teaching. At christmas 2001 I got a mild case of the creeping crud that was going around school, just wiping everyone flat.
In July 2002 I was in the hospital,sick as hell, and diagnosed with severe idiopathic cardiomyopathy and heart failure. I was so sick they were talking about a heart treansplant. They think I had coxsackie b virus, but they havent done a heart biopsy to confirm. I never drank, smoked, wasnt diabetic, my b/p was low normal. but I was dying.
Slowly my heart improved, but I was on disability. In oct of 03 I remarried my ex hubby, and we ended up with custody of our baby granddaughter.
Suddenly, in Feb 04, I was in dreadful shape with the RA. I fell down the stairs twice, because my feet weren't working. I kept dropping things. I counld't walk.
Both feet, ankles, knees, hips, hands, thumbs, wrists, and elbows were hugely swollen and hot and in awful pain. I got put on plaquinel which did nothing, we tried prednisone and added MTX. I've been on Humira, Enbrel, and now Remicade. and not much has worked all that well.
I have been in poorly controlled condition since then. I have some good days but its not been fun. From routinely driving 200 miles a day I can't comfortably drive 30 miles. Mark wakes up in the middle of the night because my sobbing wakes him. I can't walk more than a block at most. I use a wheel chair in stores.
I'm geting more and more inclined to belive that stress has a LOT to do with it for me. Its looking more and more like we will get custody of our grandson, and the stress level has been sky high around here. I can't go off Remicade, theres nothing else for me.
This just sucks big time
Roxy,