OT - Life with RA and disability | Arthritis Information

My former boss wrote me this week, asking how I was doing. I thought I would copy that answer here for those of you who know me and for those of you who might be considering quitting work because of RA. If nothing else, I hope you at least find it entertaining. It explains somewhat of why I have such a hard time of being online these days. The Rheumy seems to think my RA is under control and the other doctors treating me wish he would do something to bring it under control. This leaves me at a terrible impasse as to what to do. Do I have RA? Have I not had it for over 6 years? What about all that money and tests? Do they now count for nothing? And if I have RA or don't have RA, how do I come online and talk about it. I am confused.

Here's the letter...

At first, I didn't know how to answer that simple question of "How is life treating you?" In some ways, it is much better. I don't have to struggle so hard to get through each day. I can sit down and read a book or watch some good tv (I'm tired of tv. There is only so much of it you can watch). I finally got Julie to go to the new Mesa Art Center with me to look at the gallery. I desire to visit the galleries in Scottsdale. That dream still lies before me.

I walk without braces, but still very slowly. They have done a lot about my pain, but we are still dealing with basic functions. I had to use a walker and a wheelchair for awhile and got myself away from both. I am now working on daily walks. I would say that is definitely better.

I cannot avoid the doctors. I am still caught in the web of going to one, who finds something wrong, adds another pill, another test and sends me to another specialist. I am currently awaiting about 8 different referrals. This is not better and quite frustrating. However, they have treated a lot of things I didn't know were wrong and were probably brought on by struggling to work when I felt so bad.

My Rheumatoid Arthritis seems better by not working. Or, it is just because the newest Rheumatologist takes a look at me and cannot figure out what is safe to do. I have had some bad reactions to the RA meds and my joints are not very swollen at present. He doesn't to risk putting me on new RA meds unless my RA gets worse. But in the meantime, my nerves, blood and blood vessels have been affected by the RA. They have added neuropathy (very painful and STRANGE) and peripheral vascular disease causing them to hunt for blood clots and measures response times of my nerves. This is an inconvenience and probably will not improve my situation as there seem to be no real treatment options except the old standbys of diet and exercise.

I'm getting good at the diet, but struggle with the exercise. I'm haunted by fatigue as my iron levels are extremely low. This leads mostly to boredom as I run out of energy before I run out of things I want and need to do. I would not recommend severe anemia (caused by chronic disease) to anyone. Definitely skip that one. Being sick is not so bad if only one has the energy to accommodate it.

Julie is living with me. She lost her placement with the housing, tried a roommate who proved to be a nut case. She wasn't supposed to move in here because it is a senior park. However, we had no choice. It worked out for months and then new managers took over and decided they would have none of it. It took a lawyer and the Fair Housing Act, but we now have Julie firmly in place.

You asked me once what I would possibly do with all the extra time created by not working. There is no such thing in the universe. A good deal of time is wasted in going to doctors. I see at least 3 every week whether I want to or not. Then there is the constant battle with all the agencies that you are trying to get help from. Every thing is a major struggle with miles of endless paperwork. Not working is definitely not worth the effort as it pays terribly and keeps one in a state of continuous, unrelenting stress. It has already been 16 months of trying to get Social Security. It is one of the great unknown secrets of the universe as to when a decision will possibly be made.

This would be the greatest relief to me because you really do have to survive on no money. You can learn to do this until the battery, then the starter goes out on the car while all the cooling units break in the house, Julie's in the hospital from a near death experience and so is her dad, but in another hospital. And all this is happening at once, including the fighting with the landlord.

It has become obvious to me that life is indeed a vacuum and without work to fill my days, lots of other nasties seems to enter instead. Personally, I would rather go back to work

This is a recurrent dream I have each night. I miss working. But I still cannot sit at the computer for long periods of time and even with three surgeries behind me now and lots of continuous pain killers, I am not up to working. This basically sucks because I would love to throw all these wonderful activities away and return to the life of 9 to 5, including a paycheck.

Alas, at present, this is still not to be. On my better days, I do write on my books. But progress is slow, yet it is an enjoyable past time. It is my hope that I will keep improving my health which I work so hard at and that once again I can work. Social Security makes it very hard on one to do any kind of work while you are applying. If you do anything that resembles work, you will be denied. Even using their website to apply brings into question your ability to work. And if one does make some attempt to do a project with some secrecy, you have to figure out a way to get paid without anyone realizing it. This seems deceitful at best even thought technically you are allowed to make a small amount of income while waiting disability. However, even that seems impossible right now.

Julie is doing well these days. She has grown up a lot and makes a right decent roommate. It helps me to have her as it lessens my loneliness and she keeps an eye out for me. Adam is also doing well. He just moved into his own (no roommates for me) apartment. It is really nice and he is ecstatic.

So, this is how I am doing. I am not well. I am desperate for Social Security. I would love to go back to working and feel guilty and frustrated that I cannot yet. But hopefully I will get the Social Security. Once you are awarded this great prize which is often referred to as permanent poverty, then the government has all kinds of supports in place to help you get working again. When that happens, I am definitely going to be a writer once more, maybe an artist too. But in reality, I remain both of those whether I can earn a living at them or not. Creativity is part of me and must express itself on a regular basis that expands beyond actual capabilities. And this, makes life much better.

Deanna it is SO good to hear from you!!!!! Sorry that you are still waiting on the SS, gotta love our government eh? How are you and Julie feeling overall? Why was she in the hospital? How is your ex? Is he still in the hospital?
Sorry for all the questions, but I havent heard from you in a while..Julie was in the hospital because of her pain meds. As we know some people can become addicted and Julie had reached that point. Two times within the same month, she overdosed to the point of nearly dying. The last time she had a seizure which scared the hell out of me. If I hadn't been right with her, she would have died. Thank God for the paramedics.

We struggled to get help, but there is no real system to help someone detox off the pain meds. Basically, here, you are thrown into a holding cell until you are free of the meds. But this is extremely dangerous and life-threatening especially if you are coming off something like morphine. We had to get a morphine substitute to help get her off the morphine and then we had to detox her off the substitute. Hospitals cannot prescribe this medicine, only the pain specialist --the one that got her addicted in the first place.

This was a month of solid detoxing at home, a terrible experience. But Julie did it and she is free from them and has an entirely different perspective on the meds. She just cannot take any medication with addictive possibilities. She was very brave and now feels like she has her life back. Remarkably, she handles her pain much better and because she has more movement, she has less pain.

Her father almost died in a work accident where he was flipped about 40' in the air. He fractured his skull, his hand and three places in his pelvis. He spent 3 weeks in the hospital and came out using a walker and a wheelchair. He finally got rid of the walker this week. He was a mechanic, but he will never be able to do that job again as his hand and wrist are held together by pins. So is his pelvis. But he has taken on all the physical therapy and sits and a crossroad in his life that many of us face --- What do I do now?
Deanna, how wonderful to hear from you and all that is going on in your life. It is such a pleasure reading your messages whether it's good or bad news. It tells us about all of the struggles that you have and how you so bravely cope with them. You are a trooper Deanna and an inspiration. I hope that you continue posting because I and others do care.

Huggin ya. now & then39367.4419328704

Well said Deanna. I, too would love to be working again and off of disability but without insurance, I would never be able to pay for the handful of doctors that I now see. I am so very thankful that my wife is healthy and is able to support us comfortably while I am on disability and just trying to get stable enough (RA wise) to go back to work.

I do find I have an awful lot of spare time on my hands and I'm a person that becomes bored easily. I feel like some of the people I know says uneducated things like, "I wish I could stay home all day and do nothing." Okay, whatever! I've had this disease a long time, been on disability, went back to work for 7 yrs. and am now back on disability. What people say and what they think doesn't bother me at all now.

I'm glad your writing helps you deal better with your illness. I think being creative is a wonderful trait to have. Sorry social security is taking so long and it seems like everywhere you turn, there's a whole lot of feet dragging going on. I hope things work out for you soon. Good Luck!

bingethinker39367.4569444444

Hi Deanna- I am so pleased to see you post but not so pleased that your SS hasnt come through yet. I am so glad that things with Julie have improved and that she is your "roomate. Your creativeness is still shining through in your writing and your way with words. I really miss your posts but I just want you to get a quality of life that SS would provide for you and that you deserve.

Hope to speak to you again soon but most of all take care.

Lisa

I am soo sorry to hear about Julie, but glad that she is better. There should definitly be a system to help people detox off pain meds safely!! Glad to hear that your ex is recovering and hopefully he finds something else that he is able to do. Is he able to teach it maybe? Like a course where he doesnt have to do the hands on thing or maybe have an assistant do the hand on portion.
Hope to see more postings from you...you were definitly missed!!!

My dear Deanna, how good it is to hear from you again. I think of you often. I'm so sorry you are still needing to see so many doctors. I know how depressing that can be. It just gets old after a while, doesn't it?

Social Security can take so long sometimes. I hope it comes through for you very soon. What stage are you with the Soc. Sec.? Have you retained an attorney? I'm sure you have said before, but I can't seem to remember. It isn't a great deal of money but it certainly helps pay some of the bills.

I'm so glad you have Julie there with you. It must be a comfort to have the company. I am glad you are not alone.

Your post was beautifully written, as always. I hope you are able to write and paint again soon. I know how much it is a part of you.

I hope that your doctors can make some determinatons and find some treatment that helps your pain. I know that it must seem like visits to the doctor, and maintaining your schedule and your meds, are full-time jobs these days. That's how it seems to me, also.

I hope things start getting better for you soon, so you can kind of get back to your life. My thoughts and prayers are with you. Gentle hugs are coming your way

Much love, Nini

Glad to hear from you Deanna. Much Love & hugs & prayers for you.

Love Ya!

But in the meantime, my nerves, blood and blood vessels have been affected by the RA. They have added neuropathy (very painful and STRANGE) and peripheral vascular disease causing them to hunt for blood clots and measures response times of my nerves. This is an inconvenience and probably will not improve my situation as there seem to be no real treatment options except the old standbys of diet and exercise.

I too have peripheral neuropathy due to RA-related vasculitis and my RD is treating it and the undifferentiated connective tissue disease with the drugs below. After 5 months I'm just starting to feel an improvement in the neuropathy and the RD told me today that he's hopeful I'll continue to get better as the nerves heal, now that my ANCA is normal. You will continue to have nerve damage and worse if your vasculitis is not treated. Of all the tests, the RD was most "nervous" (his word) about the vasculitis because untreated, it can be so very serious. Diet and exercise alone are not enough. You need to be treated medically, whether it be the standard meds or maybe the AP therapy might work too. The point is, it CAN be treated and I'm really concerned that your vasculitis is not being addressed.

Deanna........I just want to cuddle you!!! I miss you so much and wish I could be closer to help. You have no idea how much I smile when you tell me about Julie. From the little bit that I see of her, I can even tell a change! It's good to have you semi-back!

I'm new but I am truly sorry for all your troubles....Big hugs for you.

I love your writing it is very good. Glad to meet you and I hope things get better soon for you. What step are you on SSDI? Do you have an attorney? It took 3 tries for me....I had to go in front of a judge so he could see how bad I was. Hopefully you will get yours soon!

There are so many kind thoughts here and encouragement. It touches my heart and warms my soul. Thank you.

I have already been denied SS and appealed in January. I am still waiting for the answer to that appeal. I have an attorney but they have not done much for me at this point except have me get letters from four of my doctors saying that I can no longer work. In some cases I had to pay a good deal of money for these letters. I have them from a rheumatologist, neurologist, opthamologist and someone else. I see so many doctors and had to change numerous times because of going off private to public insurance. This has caused delays in SS as they were waiting for the longest time for letters from doctors. Then I was told repeatedly that the delays were because SS is so backlogged. It finally went into review by the medical examiner this month. According to my lawyer, that should take another month but again may be delayed by SS being overworked or them asking me or my doctors for more info. Since I am now over 50, that should help me. And with each set of paperwork I have filed, my condition has worsened which is supposed to help your case. I keep hoping that I will get it soon. I no longer get General Assistance from the state because they only allow 12 months. It was only 3 a month, but better than the I get now.

I have learned that the only way to survive the determination process is living by faith and asking for help, both I have trouble with. But I still have been blessed and made it through when nothing looked possible.
Jesse, I wanted to answer your concerns because they are valid. I do have vasculitis and was diagnosed with it before the RA as well as the Mixed Connective Tissue Disease. But having to change Rheumatologists has really hurt my care. The first Rheumy I got decided that the Methotrexate was destroying my blood and the biologics had destroyed my immune system. At the same time, he said I didn't have RA at all because my blood looked great even though my SED rate was still in the 40s and has remained there for the last 16 months. He refused to treat me for RA and said I could go back to work even though I met 16 of the FM trigger points.

I fired him and had to wait more months to get a new Rheumy. Again, my blood tests all come out fine except for severe anemia and high SED rates. I am on prednisone and Plaquenil. I can never go on MTX again. Because I am always seronegative and rarely show active swelling, it puts the doctor in a poor position to put me back on DMARDs. It doesn't seem to matter that I have all this history and years of tests including MRIs which show RA. The problem is that if he prescribes me one of these biologics under my current conditions, he could get in legal trouble. I know this from the previous Rheumy who made such a BIG deal about it.

Fortunately, my other doctors are very aware of the problems. The Neurologist that I saw said I will never work again and the combination has destroyed my nerves and my immune system. I have Sjogren's, Vasculitis, RA and Neuropathy. This doctor does not believe he can do anything to help me. He put me on Bacoflen after trying several other meds and physical therapy which did help to a point. My pain specialist has really pushed to find me relief and to push my primary. My primary doctor is the one who seems to be pushing for more tests and more referrals to other specialists. He is working on getting me to a new Neurologist and has ordered a punch biopsy and another nerve conduction test. I am also going to have to see the Cardiologist for another full workup as I have terrible edema, peripherial vascular disease and possibly congestive heart failure. I feel fortunate that my primary is on the outlook for these problems. I also see a Dermatologist who just doesn't get it and of course my skin lesions are hiding now that I have the authorization to see him.

I am quite worried about the long term results of all this. Not working has improved the constant flares I was in before. But I've never had the huge swellings that so many people get and my hands look beautiful even if they hurt like crazy. My problems have always been with the vasculitis, my heart and lungs being inflamed and my eyes. My old Rheumy was very aware of all this. But just relating it to the new one hasn't done me any good. I am afraid of the consequences of not being treated but somewhat understand the doctor's relunctance to try new meds because my reactions to the MTX was life threatening although I was on it for over 5 years. The Enbrel did nothing for me and I evidently should have been taken off of it much earlier and it may have hurt my immune system to have still been on it. That seems to be what both doctors are implying. Plus, I have found that I am quite allergic to several medications.

I do not know how to improve this situation except keep pushing for treatment. But I will not see the Rheumy again until December. If I wish to change again, I will have to wait three months to become a new patient and start all over again.

I appreciate your concern because you are right. If I get all these tests and see the new doctors, hopefully something will show up that will get the proper treatment going again. I am frustrated that I was never told that RA could cause these conditions that totally destroy your body system wide. I am appreciative that my primary takes all of it into consideration.

I understand better now, you are truly on top of this and in fact have run the gamut of medications and options. I'm looking forward to hearing from you again, telling us you've resolved these difficult issues. I feel comforted that you appear to have a very good handle on what needs to be done (as far as a layman can) and are taking the necessary steps to reach your goal. Good luck and God bless.

Hi Deanna, I can't imagine what a trial you had helping your loved one (I assume it is your daughter, Julia) through a home detox and off those nasty pain meds. Congratulations though.

Your life has not been fair, and I hope that it will somehow improve. Thank you for sharing your life with us. This forum is such a good place to empty out our fears, our family things , knowing we will only be supported! This is a great group of loving, caring people and we are sooooo lucky to have been brought together (even if it is with this nasty disease).

I do hope you keeep writing, your descriptions are amazing (even tho I cried when you told me all your pain and suffering, I cry about a lot of things as I'm the emotional sort) It makes me sad when life isn't good for people and the pain of RA is like nothing else. I know as I had it some months ago like you can't believe. Mine is better and i'm getting my life back with a lot of drugs (below).

Please keep writing, about whatever you want, and I'll be here to read your posts. I hardly every sleep so I'm here 24/7.