RIP, Michael Graves

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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 (www.creakyjoints.org) and specifically the Joint Decisions Team (https://creakyjoints.org/jointdecisions/). 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.

Discouraged

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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: http://rheumatoidarthritis.net/living/adventures-insurance/

More Kineret and Insurance Adventures

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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.

Updates

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It’s been crazy since the New Year hit with lots of work deadlines, stress, and now upcoming travel. I hope your year is starting out calmer. I wanted to take a minute to provide you with some quick updates, as follows.

  • Kineret. I started my new biologic, Kineret the Sunday after Christmas, so I’ve been on the drug about 10 days now — much too early to say whether it’s working or not. I think I generally am feeling a bit better, not so stiff and sore all over in the morning. However, I have developed some consistently tender spots in my joints. I am hopeful this is just the result of being off a medication that actually works for so long before starting Kineret. My major concern with the drug was the reports of injection site reactions. I experienced no reactions at all the first week, but the last couple of days I’ve developed a mild redness/rash around the site immediately after injection. The only other complaint (if anything so minor can be considered a complaint) is that the injection really, really stings. The needle is very tiny so that doesn’t hurt at all, but the solution has citric acid in it as a preservative. Think about getting lemon juice in a paper cut. The stinging fades very quickly but it sure gets my attention when I’m doing the injection.
  • Creaky Joints Web Chats. If you’re not familiar with Creaky Joints’ Joint Decisions web chats, you should check them out. The next one is Wednesday, January 14 at 7:00 pm ET / 6 pm CT. It’s entitled “Right Track RA: Helpful Tips for Continued Success in the New Year.” The Joint Decision and registration links are:

Joint Decisions Webpage: http://bit.ly/1vJ79kq
Registration Link: http://bit.ly/1uMMSi4  (you need to register)

     You can watch the previous chats here:
     Chat 1: http://bit.ly/1xSbcPA 
Chat 2:
http://bit.ly/1AHLBZS 
Chat 3:
http://bit.ly/1Al4NhR

  • Petition to add RA to the Social Security Administration’s Compassionate Allowance List. RA SuperGirl has created this petition. The Compassionate Allowance List is an official list of conditions that allows the Social Security to act quickly when someone with one (or more) of the conditions applies for disability. Whether you agree with the premise or not, you have to applaud her activism. Link to RA SuperGirl’s blog post here. Link to the petition here.

That’s all the news for now. I appreciate you checking in.

My 2015 RAsolutions

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First, let me just say how much I enjoyed J. G. Chayko’s recent post on Outshining Broken Resolutions. She wisely points out that amidst the rubble of grand resolutions that somehow never quite get met there are numerous, wonderful successes throughout the year for which we should be proud.

Being an older, wiser person than I was when I made those sweeping resolutions, I only made one resolution for 2014. After having two major surgeries in 2013 (L2-L3 disk removal and spinal fusion and total left knee replacement), I resolved to stay out of the hospital in 2014. And unless something drastic happens today, I will be able to check that box.

I have no major resolutions for 2015. I told a friend that at some point in your life, keeping the status quo isn’t such a bad thing. Just not getting worse can be an accomplishment.

But my goal (if not my resolution) for 2015 is to be “better”.

I know this goes against all precepts for making your goals achievable. You’re supposed to be set specifics that you can track and monitor progress against, e.g., I’m going to do [X] for [Y number] of days a week. It seems like I always set myself up for failure when I do this.

I wasn’t bad in 2014. But I know I could eat better, exercise more, be more patient. Without setting a hard-line goal, I am going to endeavor to be more cognizant of my behavior. I want to make those good food choices off a menu rather than ordering the first thing that sounds yummy because I’m hungry. If it’s been more than a couple of days since I’ve gotten off my fanny, I’m going to get up and do something, even if it’s just a walk around the block. And while I generally try to be respectful and kind to those around me, I realize that sometimes the pain of RA and the effect of medications (like prednisone) can make me shorter to people than I intend. I want to remind myself of this fact and be aware of my words before they leave my mouth and potentially harm someone unintentionally.

There are other examples, but “better” seems to be the operative word for me in 2015, and I try to always keep my word.

I hope that your holiday season (however you do or don’t celebrate) has been joyous. Wishing that 2015 is better for all of us.

Thanks for checking in.

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