Sara, I think this is a truly amazing reflect on what WAS. To counter this, look at where you are NOW. I think that is the truly amazing story For newbies to RA, please know that this story gets better - much better! Just read many of Sara's other articles to see what she has been able to accomplish with and - dare I say it - because of RA! Kudos, Sara.
I totally understand! I just moved into my own apartment in January. The first time living solo since my symptoms started. On the plus side, living alone allows me to not have to "hide" my disease: I can have a shower chair and not be embarassed about it! I have learned a few things about myself, too. Like, with no one else around, I don't feel bad not putting something away (and it becomes a disaster). I think overall it's less stressful living by myself, but it sure gets lonely!
Great article; thanks for being an advocate for all of us.
Michelle in Minnesota
33 with AS
it sort of amazes me that your rheumatologist didn't recommend an occupational therapist - they could have given you a lot of help with doodads to get through what they call activities of daily living. Things that help you open jars, dressing hooks and sticks, etc.
But yeah... Living alone is wonderful, but not so much when you're sick. It does make you stronger and that's a very good thing.
Sara, your experiences were so similar to mine, although I put up with a lot of those problems for the best part of 6 months before I was even diagnosed.
Which brings me to your point, Lene ... I wonder how often people newly diagnosed with RA have ever been referred to or offered the services of an OT? I certainly haven't ... and just about everything I've learned about RA I have had to research myself. I had to ask to see a physical therapist to suggest exercises when pain in certain joints precluded usual activity. While I can't fault the medical care received by my rheumatologist, there is certainly no sign of holistic, whole-person integrated care.
I just wonder whether my experience is the norm, or maybe I've just been unlucky?
I was never referred to an occupational therapist. I think partly my rheumatologist at the time didn't understand or see the impact RA was having on my life. She saw what it did to my joints, but compared to many of her worse-off patients, I didn't look too bad and I was in so much shock from everything that was happening that I didn't vocalize how it was impacting and restricting my life. Now, I know better and would never let that happen again!
But I think you both raise a good point- why isn't occupational therapy de rigeur with an RA diagnosis?
Thanks Lene ... I am just coming up for air after a horrendous run (work-wise, not health!) where I went almost 3 months without a weekend off ... my commitment to submitting shareposts re RA wasn't the only casualty! But I think this last exchange regarding what constitutes appropriate care and advice, particularly in the early stages, could well be something to explore in the next sharepost?
I'm an Occupational Therapist and also someone who's had rheumatoid arthritis since age two. I think I became an OT partly because I knew how much I would learn in school about how to help myself. My experience as a patient has been that doctors won't refer you to therapy unless you ask. As an OT I've seen people with arthritis after surgery but it's always been a pet peeve of mine that people don't get referred until the joint damage has gotten that far. If someone has a stroke, they are referred to OT 90% of the time and RA is just as life changing as a stroke is. We all need to advocate for ourselves and ask to be referred to other providers so that we can get as much information about handling the disease on a daily basis. Physical therapy, nutritional counseling, occupational therapy, and mental health services have all helped me. Drug therapy alone is not going to do the trick to help someone live well with a painful body.
I wrote a book called A Resilient Life: Learning to thrive, not just survive, with rheumatoid arthritis for anyone who's interested in what I've learned during my 40 years of living with this disease. I want to pave the way for others so it doesn't have to be so hard. And that's what you're doing too Sara! You go Girl!
I was diagnosed with RA and Lupus in 2008 when I was 29, and my boys were 10 and 7. The 3 of us live together in a 2-story townhome. Before being diagnosed, I dreaded trying to walk down the stairs in the morning to get out of the house...I was the only one who could cook the breakfast, the dinner, make the lunches, tie the shoes, drive the car...Fortunately, with medication, most of those tasks have become easier. And as my sons have grown a bit older, they're able to help open the jars, mow the lawn, etc. But it's hard to have a balance and not put all the tasks on them. As the adult, I am "supposed" to be responsible for the home owner tasks. And some days (sometimes for days in a row), it is impossible....so the dishes pile up and my house looks like a tornado hit it. Oh well! At least I'm in my comfies on the couch :). I wouldn't trade my solo living for anything! I look back on a time when I stood at the top of the stairs and dreaded the descent...now, most days, i can vacuum them all by myself!! LOL!
Stacy
From what I've read, you must be pretty young--that may be a blessing. I'm 75 and with a host of other painful conditions that are all here to stay. I, too, was confronted with having to learn new ways just to get dressed. I found that there are shoes out there with zippers instead of having to lace them up, and front closing bras are a God-send! I noticed I've been using my reacher a lot more often, also. I hope you have good doctors that work as a team that can help you through the hardest part--learning how to work with your body, instead of against it to be able to live each day as best you can.
Good luck,
Jo
Hi Sara,
I can truly relate to your story. I was diagnosed 2 weeks after moving into a one bedroom apt by myself back in 2006. I was immediately put on Humira and things went well for awhile although my-every-other-week-shot-to-the-thigh became a battle since I had to administer this myself. I typically had to get my mother and boyfriend (at the time) to cheer me on so that I wouldn't back out. I stayed on Humira for about a year with no flare-ups and no pain and then I got pregnant and was taken off the drug. Long story short, married the boyfriend, had the baby, was med free and pain free until my daughter was 5 months old and that pesky RA came back with a vengeance. My now ex-husband tried to understand the disease but ultimately was not as supportive as I would have hoped and now I raise our 3 year old by myself (the ex moved to a different state for job purposes and only sees our daughter maybe 5 times a year). My parents live in the same town as me and are very helpful, but like you I live in my own place. It is hard because I am stubborn and want to be able to have my indepedence and I am working on asking for help and that is a daily struggle. As I type this I am dealing with a semi-disabled right hand. :(
I feel very alone with this disease since I don't know many people that have it and I think that maybe the worst part...not having the complete understanding of someone in your day to day life. So thank you for sharing your story, it gave me a little bit of that understanding I need.
Kate
I was feeling very alone with my disease, since I don't know anyone else who has it, and decided it's high time I look for a support group. Through a myriad of links, I came across your post. I have now ordered a book that one of your readers said she wrote. It got excellent reviews on Amazon, so I'm looking forward to reading it. I, too, live alone at age 59. I was married for 32 years when RA came calling with a sudden, painful vengeance. During the worst of it, I also had emergency gall bladder surgery. Yup, severe pain on top of severe pain. It was then that my husband, now my ex, decided to have a fling with an old girlfriend. No support from him at all was bad enough, but to discover that was devastating. Emotional pain on top of physical pain. Following a divorce, I moved to sunny California, away from the East coast, to live near my grown daughters and grandchildren. Dryer weather has definitely helped my condition. My RA is pretty much controlled, except for the flares. Living alone has been a major adjustment. The bad: no help. The good: being able to lie around and rest when I need to without being judged as lazy. I only work part-time, but find that bosses are clueless about the need to miss a day periodically. That's a whole other topic in itself. Anyhow, I feel frustrated and sad, but mostly, I'm getting on with my life. Thanks for sharing your story and for letting me voice mine.
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Sara, your articles are always eye opening to me. My 18 year old daughter has PsA and is leaving for college soon. I worry so much about her being away knowing that she will have to fend for herself. Roommates that she didn't pick may not be so understanding.
I am also sharing Emily's blog that she wrote after watching Love and Other Drugs...it brought a lot of clarity to how she feels.
http://our-own-light.tumblr.com/post/7148432880/love-and-other-drugs
Thanks from a worried mom!
Hey- Thanks for sharing Emily's post. What a great article, and I identify with every word she wrote! It's hard to keep reminding oneself of the 'good' side of things, especially on bad days, weeks, months, but it sounds like she has a really great head on her shoulders! Thanks for the comment-
Sara