Skip to Accessibility Tools Skip to Content Skip to Footer

My RA Journey

I have extremely severe RA. I could write a book on all the things it has done to me…from gangrene in both legs to having my hands fold over and freeze. I type with frozen thumbs. My feet and toes are dislocated. I’ve had 8 major surgeries in the last 4 years, I’ve had viral and bacterial pneumonia which caused a heart attack… I just got out of ICU where I was in for a month… I have congestive heart failure, renal failure, all caused by RA…

The only thing I can tell you is that every day is a surprise with RA. Once you have it you own it. You need to learn as much as you can about RA so you can intelligently participate in the conversation regarding who you talk to regarding this disease. Let me tell you… I have had at least a dozen Rheumatologists in the past 18 years. I have had some very bad ones. I had ulcers on my legs which developed into gangrene and I had 4 pic lines put in my heart, was hospitalized 10 times, spent 30 sessions in a hyperbaric chamber and I was dying.

My drs were from Kaiser. My 35 year old was frantic so she went on line and within 2 days realized that Kaiser drs were treating me for the wrong disease. They were treating me for stasis ulcers but what I really had was Pyoderma Gangrenosum which is part of Felty’s Syndrome which is part of RA. My daughter, who is not a dr., found the info on Kaiser’s own website under rare diseases… Go figure…

I took the info to a new specialist, who put me on Cyclosporine, an anti-tissue rejection drug and in 6 months my legs were healed. That’s amazing because it was down to the bone. It’s healed but the scars are Huge… Because gangrene is so painful, I was on so much morphine my bladder quit working and had to have a catheter for a year. That was awful, not to mention that the massive opiates had damaged my kidneys. A**hole Kaiser drs told me my bladder would never work again. When my legs started healing I tapered off morphine. I tried pot. Pot worked great and now that’s all I use for pain. My bladder started working again…

When I was just hospitalized I was at Oregon Health Science University (OHSU). While there I used marinol, a derivative of pot, for pain. I was able to speak to many young drs there about pot. They all knew what it had done for me. I was amazed at how progressive these drs were. They all knew of the medical benefits of using marijuana… after all… seeing is believing and you can’t get much more crippled than I am.

I may be bedridden but I am still very active. I think I’m supposed to be here to tell people about RA… I am the first bedridden real estate broker in Oregon and I’ve also been appointed to be on a governor’s commission as a commissioner, which I participate in via the internet.

Life will not be the same with RA, but you can reinvent yourself every day… And there are lots of ways you can do that. If you can’t keep working in your current field of work you can always contact the VOC REHAB office in your state. Their purpose is to help you find a job if you need a new line of work. You can even get training… I have a 40 year history of being a business woman. I have been on many boards of directors. I was a bank manager for many years, where my area of expertise was negotiation, and I previously had my real estate broker’s license for 20 years before I had to quit in 2010. I wrote a grant with VOC REHAB and was able to take 190 hours on line and was able to get my license again. If anybody needs a pep talk… I’m right here… don’t hesitate!… Plus… I’m the new poster child for marijuana!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • AllieRAsurvivor
    2 years ago

    prgrtp~
    Your story really struck a cord in me. I have been living with RA but never talking about it out loud to friends or co-workers, except my sister who actually got it in her 30’s. I had hoped people would not notice and treat me as if I was normal. I didn’t want to be labeled disabled?? I know crazy, but true. I was diagnosed In Los Angeles Children’s Hospital at age 6 been on every med imaginable, on prednisone for 10 years, and it added so much weight and puffiness to my body. Celebrex being the worst of all, as it gave me Stevens-Johnson syndrome and Kaiser Doctors would never admit to that. So my point is I too have been challenged my entire life. Had to be in a wheel chair at amusement parks for any long distant walking when I was a kid. As I got older I just wrote OFF any long distant walking. There were times I would get to a shopping mall and couldn’t make it back to my car!!
    Now at 54, I have had to reinvent myself after a 30-year career in Advertising & Marketing. The travel and long hours became over whelming and I fell into a depression. I type with a frozen pointer finger on my left hand and both thumbs dislocated. I was the bread winner of my family until 3 years ago when I had to take off time for my triple arthrodesis foot fusion. Using a scooter was actually pretty cool, but I didn’t like when anyone would ask me what happened. I wanted to make up something interesting like a ski accident, but I am a terrible liar so I just play it down and give short answers like I tripped. I have had my left hip replaced and multiple hand / wrist surgeries, with more surgery needed.

    After reading your story I realized we have a very similar RA lifetime stories and I can relate to yours. I don’t even think they do the Scoliosis test in schools anymore, but I can relate and remember them. I just started a promotional products business online, trying to drum up business http://www.corpdnapromos.com, and I have applied for disability three years ago and finally have a court date in April, go figure?

    Hope all is well with you today and going forward in this new but uncertain 2017. Continue reaching for the stars…I will see you there!!
    Allie

  • SusanHU
    3 years ago

    Hello prgrtp,

    Thank you for sharing your story and we hope the site helps you connect with others who understand your experience.

    We’re glad you have found something that works for you and a group of doctors who are there for you – that is the goal for everyone!

    Please keep us posted on your journey and let us know if you need anything!

    Best,
    Susan
    (RheumatoidArthritis.net Team Member)

  • Poll