I’ve Always Been Crazy, But It Keeps Me From Going Insane.

Thank you, Waylon Jennings, for that gem! I think I’d make one minor tweak to it to fit my life now: I’ve always been crazy, but Xanax keeps me from going insane. So far most of my tests and come back clear, negative, etc. I have one elevated titer for a virus. We won’t be able biopsy and test for this one unless or until I have another big breakout. They’ll need to biopsy a large lesion. Catch 22! I get to find out if this is the source of my Sweet’s (yea) if I can have another bad outbreak (boo). [Insert foul language here.]!

Let’s make one more revision: I’ve always been crazy, but Xanax almost keeps me from going insane. It’s incredibly frustrating dealing with such a rare disease. 

It’s not the doctors’ faults. So little is known about it, they don’t have anything to go on. So, I get to “donate” blood to my cause own cause quite often. I even have “track” marks from all the “sticking.”

Bethesda truly has been wonderful with the exception of just a small few. I didn’t think I’d be saying I’m glad I’m here if you asked me 3 months ago. I am saying it now. I am very glad [...] continue the story

We Are All Liars!

Do you have chronic illness? Yes? You’re a liar. I’m a liar, too.

The problem with chronic illness is that it’s just that…chronic–always with us. If you could talk to your old self, the you before your illness, your old self would be freaking out about all the symptoms you’d be describing and extremely sad about how drastically life will change from pre-disease to where you are now.

You see, it’s generally a gradual onset. A symptom starts. You are forced to deal with it. You learn to manage that symptom and/or live with it. Slowly the symptom may worsen with you barely noticing it. Or, another symptom starts. You deal with it in addition to the previous one. You learn to manage that symptom and/or live with it. It’s a vicious cycle to which you adjust. Your “normal” is no longer what it was pre-illness. You develop a “new normal.” Your pain scales get readjusted. What would have been an 8 pre-illness on a 1-10 pain scale, with 10 being the worst pain ever, becomes a 5 for example.

Therefore, when family, friends and coworkers (especially coworkers) ask how you’re doing, your response may be “Fine,” or  “I’m doing okay considering.” That’s called minimizing. We all [...] continue the story

Life with Chronic Illness

My life started off “special.” I was born with an usual “birthmark.” My parents and doctors didn’t know what it was. After a biopsy when I was 10, they at least determined that it wasn’t cancer or dangerous but would grow back if we ever tried to have it removed–it grows, you see, and its roots are in the muscle. It’s not a pretty thing. I can remember wearing my modest two-piece as a little 5-year old in a friend’s yard. When she asked if we could go inside to play, her father replied, “Not until she wipes that mud off of her.” I looked all over myself. I couldn’t find mud anywhere. Then, her dad pointed to my stomach–right where my birthmark was. I didn’t want to play anymore and walked home.

Lots of my friends had allergies, but none of them seemed to have them as bad as I did. Nightly allergy shots were lots of fun as a 3-6 year old.

Many people also have asthma, but I seemed to be the only one of my friends who did. I tried to keep up with my friends, and I was able to play sports. I just wasn’t that good [...] continue the story

Do It Yourself Management of Chronic Disease

We can’t manage our chronic disease by ourselves, unless we quickly graduate from medical school and then become specialists. That’s not too likely with a new diagnosis that has an impact on your health. etsy NostalgicLinks However, to take a guess, even average people don’t see doctors much more than two hours over a year. And that may be a high estimate. But even if you spent a whole 24 hours out of your year seeing doctors and other health care professionals, that leaves you with the other 364 days to take care of yourself.

There is one thing I have learned on Twitter. That is that health literacy is the greatest predictor of health. In this context literacy means Grade 8 or better education. I would go further and say that with a chronic disease you need to be able to do even more – you need to learn the medical vocabulary of your disease so that the appointments you have with doctors are as effective as possible. Many of us have likely had the experience of having to wait for the next appointment to decide on a course of action because we needed time to educate ourselves on the choices [...] continue the story

Identity and Work (Permanent labor force non-participation)

When I was diagnosed with RA I was working part time in a bank as a customer service representative. The friendships with people I had known for years and with fellow workers were important to me. But with RA fatigue and bad feet it became difficult to do that job as RA progressed. It was a gradual change but continuous and unwelcome. A TD Bank in New York. Surprised to see familiar company elsewhere. I started working part time in market research at that point and found a sit down job on the phone was far more possible for me. When the company owner found true love (and busted up two marriages in the process) two of us there decided that we could do the job so we made a deal to buy the company. It is so much easier to be the boss. Management accommodates your every need. I had a great collection of suns and garage sale art and really enjoyed talking to our clients and solving their problems. There was some friction. My partner at one point said that if she had known the extent to which RA would affect me she never would have gone ahead with the partnership. [...] continue the story