Being flexible (redefined …)

I’ve always been flexible. As a youngster I could put my ankles behind my head. Even as an adult I was able to stand and put my palms flat on the floor (in three-inch heels) and stretch to put my forehead to my knees.

All that pretty much came to a screeching halt after my hip replacement surgery a couple of months after my RA diagnosis. Bending more than 90 degrees at the hip can dangerously stress an artificial joint.

Since then, my RA has progressed and my joints have stiffened. Just getting a full range of motion on some days is a major accomplishment.

Read the rest of the post here:


Two recent things of interest


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Seems like I’ve been neglecting my blog lately (more about that in a later post), but I wanted to bring your attention to a couple of interesting things. If you follow the same blogs I do, you may have already learned about these, but I think that just underscores their interest quotient.

Show Us Your Tats!

I don’t have tattoos so I can’t join, but has a wonderful collection of RA-inspired tattoos (who would have thought?) and the inspirational stories behind them. The collection can be seen at the Healthline site:

Healthline is currently accepting new submissions. If you have an RA-related tattoo that you’d like to share (and you know who you are …), send in a clear photo of the tattoo + short description, with the subject “My RA tattoo,” to Nicole Lascurain at There are some other guidelines at the beginning at the tattoo slideshow (size of picture, word count, etc.), so please visit there first.

Help Document the RA Patient Experience

I have been having both live and email conversations with Keith Olsen at Zitter Health Insights which gathers both patient and physician experiences connected with various conditions including rheumatoid arthritis through They send out various surveys (all of which pay a few $$ each to a PayPal account) that become part of overall research. In the light of full disclosure, the research is then sold but I think that the more information available about RA the better. You can learn more about the experience via Wren’s excellent post at If you want to sign up, the registration link is

So, enjoy, if you wish to participate. Even though I don’t have tattoos, I loved the slide show and the various stories people shared. I’ve chosen not to participate in the Your Care Moments surveys, but that’s a purely personal decision (I can’t take advantage of every opportunity I’m offered) and has nothing to do with the validity of their program.

Thanks for checking in.

RIP, Michael Graves



Michael Graves is considered an icon of American architecture, lending a brilliantly colored voice to the mosaic of what we consider design. Many know him as the designer of the Portland civic center, which is considered the first postmodern building in the U.S. His greatness in design combined with a trademark whimsy reaches from Disney resorts to the scaffolding for the renovation of the Washington monument.

He felt that good design should be accessible by anyone and extended design aesthetics to everyday objects. His singing stainless teakettle has a built-in comfort

Michael Graves Teakettle

Michael Graves Teakettle

handle that is also heat-resistant (good design) and when the water boils, a bird on the spout sings (whimsy).

What many people don’t know is that Graves became paralyzed from the waist down in 2003 and was confined to a wheelchair for the rest of his life. Graves wasn’t feeling well when he returned from a European business trip and found himself fighting a mysterious infection that led to his permanent disability.

Graves and bathtub handle design

Graves and a bathtub handle design for seniors and those with disabilities.

Rather than defining him, Graves claimed the change in his life made him a stronger designer. He had a first-hand perspective of what accessible design really meant. From addressing Congress to bringing the force of his design aesthetic to everything from building to daily tools, he integrated even more accessibility into both structures and products. He was quoted as saying that good design promotes healing and bad design can inhibit it.

I believe that his focus on accessibility and designing for universal access brought a new level of awareness of those needs to the architectural and design community, not only in the U.S., but globally. And while often a controversial figure in the industry, his designs are nonetheless studied by architectural and design students around the world, training a new generation in thinking about the broader needs of the whole population.

Thank you, Mr. Graves. May you rest in peace and your legacy live on so that future generations are better served.

Buildings at St. Colletta

Buildings at St. Colletta, a school for those with disabilities.

Get Ready for Creaky Joints 2015!


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I reported last November that I was privileged to become associated with Creaky Joints ( and specifically the Joint Decisions Team ( Please check out both of these links. These are wonderful resources for those dealing with arthritis (i.e., creaky joints) and they do a great job of advocacy for those of us with rheumatoid and other arthritis disease.

Last evening they offered a preview of some of the activities they have planned for 2015 and it’s going to be great. The ink isn’t quite dry on all the events so I can’t share specifics with you yet, but they’ve pulled together a busy year packed with great information and interactive events. Stay tuned here or check out the Creaky Joints website (link above) for more information.

Thanks for checking in.



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this-too-shall-pass1It’s been a crazy start to the year. I reported that in late January and early February I had been working 10- to 14-hour days. To help me make it through the added stress and increase my energy I added 5 mg of prednisone to my daily cocktail of drugs.

I have discussed the occasional use of low-dose steroids with my rheumatologist and I understand what guidelines I can do and which I can’t. A short time on steady dose or a taper is permitted without having to set up an appointment to discuss with her. We’ve been through enough that she trusts me to know when I need it and when I don’t.

So it’s been about three weeks since the project wrapped up and since I went off the prednisone. At first I thought I was suffering from steroid-rebound, feeling worse because I’d stopped the prednisone. But after this length of time, I’m not leveling off, I’m getting progressively worse.

My joints are not only swollen, they’re painful. There are times that my ankles hurt so badly I can barely walk. It’s difficult for me to cook or even to work at the computer for too long because of the pain in my wrists and hands. Bending over is nearly impossible for me as my spine goes through a serious of painful pressure points as I bend and straighten.

If you’ve visited my RA drugs page, you know that I’ve worked my way through most of the biologics plus a couple of the DMARDs. I’ve only been on Kineret for 2.5 months. But given that most biologics will reach their effectiveness in three months, I should be getting better, not worse.

I was originally optimistic about Kineret. I almost immediately started feeling “better”. When I saw my rheumatologist the first time after starting Kineret, my joints were still swollen and tender but not as much as they had been on Remicade. I was definitely trending in the right direction.

Now, not so much.

I’m not supposed to see my rheumatologist again until mid-April. Until then I’m supposed to be taking my Kineret. (By injection. Every. Single. Day.) Taking a biologic drug is a commitment. It’s a conscious decision that the potential side effects are outweighed by the positive effect of RA symptoms. Taking a biologic that doesn’t seem to be working is something else altogether.

I need to go have my labs done. Then I’m going to move up my appointment with my rheumatologist. I don’t want to change drugs again. For one thing, I’m running out of drugs to try. But I also don’t want to keep taking a drug that apparently isn’t working.

There are other things in my life that are causing stress (new working arrangement with my client, my husband’s health issues, etc.). All this combines to just basically discourage me.

I keep reminding myself of the ancient wisdom that’s come down from the ages. No truer words have ever been spoken than, “This, too, shall pass.” And being a person of limited patience, like the sign says, “Now would be good.”

I hope that whatever passes by your life brings you a smile. Thanks for checking in.

Don’t even know where to begin


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It’s been more than two weeks since I last posted. It’s not that I’ve been ill (that’s the good news), it’s because I have been overwhelmingly, mind-bendingly busy. I promise that if it weren’t for prednisone, caffeine and Scotch, I might not be here to write this post. Here are some quick updates to bring you up to date.

  • I had a project that was due to be shipped last Monday. This necessitated 10 to 14 hour days, for two full weeks (including weekends) — thus the prednisone and caffeine. I was pretty much required to be on site (thus the Scotch — not at the client site, but after I finally made it home). Being on site added an hour a day due to the commute to the client office.
  • Last Monday, I was in the office at 7:00 am after having about four hours sleep. I got home at 3:30 am Monday morning (20.5 hours later). I got 2.5 hours of sleep, then I had to get up to take my husband to the hospital for cardiac ablation procedures. I have committed 30 hours a week to this client, so I think I’m good until sometime next June …
  • My husband has had heart arrhythmia issues since his bypass surgery a few years ago. The problems have increased to the point that his doctors agreed that the ablation procedures were called for. (He had two different kinds of procedures to address the two types of issues he had.) The procedures appear to be quite successful although I think my husband was a bit surprised about how much the surgery took out of him. But less than a week later, he is pretty much back to normal activities. The additional good news is that if things remain calm for a few months, he will probably be able to get off blood thinners.
  • I will tell you that sitting around a hospital waiting room for five hours when you’ve only had six hours of sleep out the previous 48 is very difficult. (More caffeine, more prednisone.)
  • In the midst of all this, I finally got my new insurance pre-approval process completed and have gotten my first shipment of Kineret from their specialty pharmacy. The good news is that the drug will only cost me a $60 copay instead of the previous $150 copay (saving me $90/month). I am saving an additional $900/month on the difference in premium costs on the new insurance vs. the old insurance. The more good news is that the new specialty pharmacy is a dream to work with. Really could not be happier.
  • What should have taken two days to get pre-approval took more than two weeks due to the incompetence of my rheumy’s nurse. This is the same person that caused my Remicade infusions to be delayed starting by more than a week. A discussion with my rheumy seems to have failed to make her realize this incompetence. I seriously considered switching doctors, which is saying a lot because I love my rheumy. I remain hopeful that the nurse’s incompetence will cause her to lose her job, so I can be rid of her and keep my doctor. If not, I will revisit my decision to change doctors. I don’t say this lightly because she’s helped me through a lot this past six years. But I am also lucky to be in an area where there are a number of top-notch rheumatologists I can see if we’ve come to the point where her practice no longer matches my needs.

I have generally been able to catch my life back up this week. My husband has been carrying the household load up until he went into the hospital. Once I got caught up on my rest, I’ve been able to get caught up on other things as well, including (finally) my blog. I apologize to all my blogger friends who have been doing some amazing posts that I haven’t had time to respond to them. Hopefully my life will be calmer in the coming weeks. (Not counting the new client project I just took on and the ice storm that’s headed this way.)

I hope your life has been calm, interesting, and blessed. Thanks for checking in.

More insurance adventures

A previous couple of articles (here and here) covered the insurance trap in which I find myself — having to work just to pay my health insurance premium. I’ve had some very interesting insurance adventures since then.

That article was written at the end of the year during which I had met my deductible. As such neither the infused biologic I had been on (at more than $16K per infusion) nor the new injectable biologic to which I had just switched (about $3500/month) cost me a single penny.

Then the New Year came.

Read the rest of the post here:

More Kineret and Insurance Adventures



So I’m in the middle of my third week of Kineret. I think it’s still a bit too early to tell if it’s working. It’s a bit weird. I think I generally feel better all over, but my joints are still sore and tender. I’m hopeful this means the drug is working and that it will eventually provide relief for the joints as well as the general inflammation.

The first week I didn’t have any injection site reactions, but toward the end of last week I started having a silver-dollar-sized rash around the injection site. It didn’t hurt or itch, but it also didn’t go away for several days. At first I thought it was kind of handy because I could see where I had injected and, judging by the how red the reaction was, how recently. But then I began to run out of room on my thighs (didn’t want to injection into an area that was already having a reaction). I’ve since switched to my abdomen and am hopeful that my thighs heal up before I run out of room on the new area. At least it doesn’t hurt or itch, which is a blessing. I had site reactions with other biologics but they usually calmed down after a few weeks, which is what I hope will happen here.

So, of course, it’s time to refill my Kineret prescription. My local specialty pharmacy, which I’ve been using since going on biologics, called and told me that I’d have a $1700 copay. This was a shock to my system since it didn’t cost me a dime in December. I had two or three conversations with them over the course of a couple of days with the reason initially being that it was a new year and therefore the deductibles start over. That didn’t make sense because the drug should be covered under the prescription part of my insurance, not the medical.

After further conversations, turns out that my local specialty pharmacy (which I love and it’s local so I can just go pick up my prescriptions — which is important for refrigerated drugs) is no longer in network with my insurance company. If I want to pay $150 instead of $1700, I had to switch to my insurance company’s specialty mail pharmacy and have the drugs shipped to me. (Don’t you just love it when insurance companies run your life?)

I hate giving up my local resource, but even if I could afford $1700 (which I can’t), it doesn’t make sense to spend that kind of money when I can get it for less than a tenth of that amount. I really wasn’t happy.

But I’ve been amazed. I talked to the new pharmacy people and they arranged to get my prescription transferred over that day. I got a phone call confirming it and they set up a delivery date. They ship overnight. I was out yesterday so I arranged to have it delivered today. I got an automated phone call telling me that it had been shipped with an order number and instructions that if I didn’t receive it as scheduled to call them. The people on the phone throughout the entire process were very courteous, knowledgeable, and respectful, answering all of my questions. They were so nice that I had a really hard time being grumpy.

So here we are in the new year with a new drug, a new pharmacy and new insurance rules. Hope your new year is starting well.

Thanks for checking in.


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