Full-timing with a chronic illness and health care?

Full-timing with a chronic illness and health care?

by Marilynn
(Seattle, WA)

Hi,

My husband and I really want to become full-time RVers early next year and I am seeking some advice. Any help anyone can give would be greatly appreciated. I am 45 years old and have Rheumatoid Arthritis, as well as several other serious health problems and I am now retired and on SSA Disability. RA is an autoimmune illness and normally I must visit my 2 major doctors every 28 days. One doctor for my pain management which consists of 2 different narcotics and the other for my IV infusion of Orencia for my RA and my bloodwork.

I really want to be able to become a full timer for a couple of years or so to allow me to see all the things I can while I am still getting around with a cane and using a wheelchair as little as possible. Someday that won't be the case. We just need some suggestions as to the best way to deal with the doctors. Returning to Seattle once a month is just not feasible if we want to go to New York or Washington DC or Niagra Falls or Florida. This is very important to me. We had planned on doing this before I became sick and I am not the kind of person to let things stop me. Please, help me find a way to make this work. We plan on getting a 32 foot motorhome.

Thanks!

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Aug 09, 2011
On the Road - Now in Yakima, WA
by: Marilynn

As a follow up to my last comment, I also forgot to mention that in November I went off Orencia and went on the Cimzia injectable. I have had such good results with the Cimzia that I no longer require Methotrexate. This has increase my functional good days tremendously making the possibilities for this trip more promising. I am just hoping my body's tendency for rejection doesn't continue, as it would be nice to stabilize for a while. Best of Luck to you and your partner Robbie. I hope you can get out and enjoy yourselves.

Aug 09, 2011
Update on my status (now on the road)
by: Marilynn

Well, it took a lot of work, but here was what I was able to do. I had 2 Radio Frequency Nerve Burn Procedures on the Right and Left side of my spinal column through my pain management doctor which involved The nerve bundles on each side of 5 of my Lumbar vertebrae, stopping the pain signals to my brain. This allowed me to stop taking the synthetic morphine I was taking twice a day for long term pain. This made it easier to turn my pain management back over to my Rheumatologist. He is now handling all my care while I am on the road. He wrote me 2 predatedc scripts for pain and then when I get to a spot I can make an appt with an R A doc, then he can call my doc in Seattle and they can talk and I have all my records with me. Then he/she can write my next scripts. If the doc isn't comfortable, then my Seattle doc will FedEx them to me.

Aug 09, 2011
Marilyn, how's it going?
by: Robbie

Hi, my partner and I are planning the same adventure as you. She is a cancer survivor. She also has similar health concerns being managed by a pain Dr and a general Dr. We were wondering how it's going? Can you give feedback both good and bad. Thank you for your fortitude and keep going. We'll be joining the club in a few years.

Oct 28, 2010
Thoughts on Orencia
by: Z

I'm browsing this forum for my own answers, and your question is one I will be facing when we become full timers in the future. Unless you've experienced a flare, there's just no describing how excruciating the pain is. I am fortunate to have had a wonderful response to Orencia, and my dr requires bloodwork less frequently. It's the 28-day Orencia infusion that is of concern to me. Recently I saw a mag in the dr office, and there are now monthly self-injectables, an improvement over ones like Humira and Enbrel, which I think are used weekly. They seem to be constantly making improvements for us RA people. I sure hope you can find a regimen that allows you to get out and go, enjoy!

Sep 06, 2010
Similar Situation
by: Carol

My other half, Johnny, also has RA. He was diagnosed at 19 and will be 59 in a couple of months. Fortunately, he's still getting around pretty well. Of course that's with the assistance of having both knees replaced (1 twice) and his right ankle fused. Fortunately, or unfortunately, depending on the location, he relies on the VA for his healthcare. He recently relocated to Austin to be with me and since then it's been much better.

We have been traveling with our 40ft 5th wheel for at least 6 months of each of the past few years and are planning to go full time within the year. His healthcare is a big concern for us. At the moment he is off most of his RA meds. Down to predisone which is cheap and easy to get. However that could change at any time.

We're working with his rhuematologist to have orders written so he can have blood drawn at any clinic while we are on the road. We're also working out orders to get physical therapy on the road. We've been told he can get his blood work done and they can fax the results back to his rhuematologist. She will then schedule a phone appointment with him.

I'm confident that it is workable. We just have to find VA Clinics that will cooperate.

Good luck and don't let anything get in your way!

Sep 03, 2010
You can do it!
by: Valerie

Scheduling advance doctors appointments can be a bit tricky, but it IS possible. My husband has end stage kidney disease and we are becoming fulltimers on September 13th. The most important thing is to DO YOUR HOMEWORK and call the doctors in the areas you will be during certain months. This does limit you somewhat, but you do what you have to do. My husband has to have home dialysis supplies delivered each month and we must give a good address where we will be in advance. So we make plans. Also ask your current physicians if they could assist you in making your dream come true. See if they can give you prescriptions for three months at a time. Good luck to you and don't let anything keep you from going fulltime! You will make a way, I'm sure!

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