A great new book by an (almost) home boy


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I believe one of the greatest tools of fighting a chronic illness is the accessibility to the experiences of other people with the same condition. I know that I have been encouraged and enlightened by the many friends I’ve made in the blogging community. Beyond that, experiences recounted in books like Your Life with Rheumatoid Arthritis by the brilliant Lene Andersen, add a scope and depth to the mosaic of information on RA that is invaluable to other RA patients.

I’ve just come across another promising book, So Young – A Life Lived With Rheumatoid Arthritis, by Daniel Malito. Daniel contracted JRA at 9 years of age. Now 37, Daniel recounts his struggles and triumphs of living with the disease for more than a quarter of a century. Among other accomplishments, Daniel is a contributor to Creaky Joints, one of the outstanding arthritis organizations.

As it turns out, Daniel is from Garden City, New York on Long Island. I was born in Garden City, Kansas — a small city that’s in southwest Kansas, about one-half inch from the Colorado state line on most any map. My Garden City became (in)famous because of its proximity to Holcomb, Kansas, the home of the murdered Clutter family that was chronicled in Truman Capote’s book, In Cold Blood and further tied to that incident through the brilliant portrayal of the book’s author by the late Phillip Seymour Hoffman in the movie Capote. Other than my brother, I’ve never actually run across anyone else from any Garden City so it was quite serendipitous to find such an amazing book about JRA and someone (almost) from my home town.

I encourage you to take a look at the book and to give Daniel a shout out as well. (Link to his website: http://www.danielpmalito.com/.)

Thanks for checking in.

The D word



I reported in my last post that I was changing primary care physicians. This was not by choice. I am very particular about my health care professionals and I had been going to this doctor for most of my life. He’s helped me through a lot of stuff and even saved my life a couple of times. I saw him last November for a regular check up and, as he is older than I am, I asked him if he was going to retire any time soon. Between his age and constant complaining about “Obama Care” I wouldn’t have been surprised to see him hang it up. He assured me that he had just renewed his office lease for three more years, so he would be taking care of me for at least that much longer.

Then he died. Suddenly. Of a stroke.

I missed the obituary in the paper. It was during a weekend when I was working long hours and had skipped my usual morning paper routine. My husband was trying to get some information clarified for a life insurance policy and so spoke to the office who let us know.

He has been such a constant in my life for so long — one of the few people I really trust in my life. I am still a bit disoriented by it. The last few years I have been seeing him every 3-4 months because I need to be checked due to some of the medication I am on. I could talk to him about anything medical or not and our appointments generally lasted longer than the standard 15 minutes. It’s odd that I’m not planning for my next visit to see him.

A week or so I was reading the obituaries (which I read every morning along with the comics) and there was an obituary for someone who had the exact same birthday as I do. True, she was one of the younger people in the paper that day and she had health issues even more serious than mine, but it is startling to realize that people your age are starting to show up in the obituaries.

It’s one thing to be startled by the death of a perfect stranger, but it’s another to lose someone who has been part of your life for so long.

In the meantime, we’re scrambling to get established with a new doctor because, among other things, we have a number of prescriptions that will need to be refilled and we can’t do that without having some to prescribe them.

But I will miss my old doctor. It was nice to have a friend in the exam room.

I hope the only D word that visits you today is “delightful”. Thanks for checking in.

Full Disclosure


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So I am switching to a new primary care physician. (More about that in a separate post.) My first appointment is in about 10 days and of course I have all the new-patient paperwork downloaded to fill out. I hate that stuff and even as an established patient you get to fill all of that out the first of every year anyway.

But I haven’t seen this guy before. We’re starting from a blank slate. He does office in the same medical complex as most of my other doctors and he’ll have my medical records from my previous physician. This is a big change for me because, after 30 years with my other doctor, he and I had developed a good relationship and a good approach to my health care. I hate training new doctors.

But going over the paperwork which asks for current drugs, past surgical history, lists of major diseases and complaints, I noticed a big gap in the information requests. It doesn’t ask for the contact information for any other doctors who treat me. To me, this is a major oversight. What if he finds something on an exam or a test that my rheumy needs to know about? How would he even know?

So, in addition to insurance, scripts, surgeries, number of siblings and all the other stuff they want, I’m going to include a list of my other health-care providers. In the age of medical records this may be redundant. However, especially when starting fresh with a new doctor, I think knowledge of my other health care providers is an important aspect of establishing my care.

I hope whatever disclosures come your way today are the good kind. Thanks for checking in.


Even I couldn’t ignore this


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January was crazy for me. I was wrapping up a major project and that included long, long hours and lots of weekend work. I barely had time to come up for air, much less attend to those non-essential things like laundry. (Thanks to my husband, we made it through.)

But not even I, in my work-induced fog, could ignore the recent major news stories about rheumatoid arthritis. And while I have reservations about them, unless you’re Bill Clinton or Anthony Weiner and their various sex scandals, the old adage that there is no such thing as bad publicity is certainly true. Let’s face it, when it comes to diseases, raising awareness is a critical early step in finding substantive treatments and eventually a cure.

The first was on January 17, marking the 50th anniversary of the Surgeon General’s war on cigarette smoking. The announcement tied cigarette smoking to a number of new diseases including Type 2 diabetes mellitus, age-related macular degeneration, erectile dysfunction and, yes, even rheumatoid arthritis. Of course, the news was really about the real health issues of cigarette smoking, but this kind of awareness of RA can’t be all bad.

The news media reported cigarette smoking as a cause of RA, but looking closer at the information, that’s not the way I interpret the news. The foundation of the surgeon general’s warning stems back to 2001 research that shows the profound impact of cigarette smoking on RA patients, including the fact that they are less responsive to treatment. Part of this is the apparent effect of smoking on blocking TNF inhibitors which are the disease modifying elements of five of the most-used RA biologics on the market: Enbrel, Simponi, Humira, Cimzia, and Remicade. The way I understand it, cigarette smoking doesn’t actually cause RA, but your chances of receiving relief or going into remission are greatly reduced which means a greater chance of debilitating illness.

The other news story just happened. It appears that the USDA, the National Institute of Health, seven nonprofit health organizations, the major pharma trade association, and 10 drug makers have formed a public-private partnership (named Accelerating Medicines Partnership) to assertively address chronic diseases including Alzheimer’s, Type 2 diabetes, and two auto-immune diseases — rheumatoid arthritis and lupus. The partnership announced Tuesday will seek to identify biological targets present in a disease, such as abnormal genes or particular proteins. The goal is to not only find better treatments but also to find tests that better identify the diseases at an earlier stage. It’s a five-year program with a “modest” $230 million budget the first year. Not surprisingly, $130 million of that budget will be focused on Alzheimer’s research, but I was heartened to see RA included in the studies. I’ve included the full list of participants below.

While I am the first to look with askance at anything that corporate America does (being somewhat cynical that anything they do has more to do with corporate profits and less for the good of mankind), I am frankly astounded that this partnership exists in the first place. How this came about in this age of corporate competition is no less than amazing. I only hope that advancements do come out of this (and not just endless committee meetings) and that, while RA and lupus are low on the totem pole, that some positive results trickle into the RA community.

So, seemingly good news. Certainly good exposure for a terrible disease. I hope whatever news comes your way brings a smile to your face. Thanks for checking in.

Participants in the Accelerating Medicines Partnership:

  • DRUGMAKERS: AbbVie Inc., Biogen Idec Inc., Bristol-Myers Squibb Co., GlaxoSmithKline PLC, Johnson & Johnson, Eli Lilly and Co., Merck & Co., Pfizer Inc., Sanofi SA and Takeda Pharmaceutical Co.
  • NONPROFIT FOUNDATIONS: Alzheimer’s Association, American Diabetes Association, Foundation for the NIH, Geoffrey Beene Foundation (supports early medical research), Lupus Foundation of America, Rheumatology Research Foundation and USAgainstAlzheimer’s
  • INDUSTRY TRADE GROUP: Pharmaceutical Research and Manufacturers of America
  • GOVERNMENT AGENCIES: U.S. Food and Drug Administration, National Institutes of Health

Well, that didn’t go well



So I had my visit with the endodontist yesterday afternoon. I’ve been to him before with other teeth that needed root canals.

I won’t go into the painful details, but let’s just say the appointment didn’t go well. This root canal, as I discussed in my previous post, is a couple of decades old. Way back in them olden days, they did the procedure a bit differently than they do today. Today, after cleaning out the tooth roots, they fill them with a sealer paste and a rubber compound called gutta percha. When I had this dental work done, instead of gutta percha, they cemented in metal rods that extended the length of the root.

We spent an hour and a half drilling and pounding and pulling, but the metal rods in the tooth would not loosen and would not come out. The endodontist first drilled through the crown, then finally took the crown completely off to try to get access. Nothing worked.

So now (after 90 minutes of stress and pain and $500 later) I have a tooth (without a crown), stuffed with some medication and sealed with cement and am looking at getting it extracted tomorrow morning. Not the way I want to start my Friday.

That’s just the beginning. After I heal up, then we have decisions to make on bridges vs. implants or just having a hole in my mouth (which isn’t the best idea).

On top of it all is the emotional impact. I had an aunt who used to proudly declare that she had all of her own teeth. Growing up in an era before fluoride was added to water, and in depression-era lack of dental care, that was quite a statement. And while I’ve lost bits and pieces of myself over the years — from tonsils and my appendix to major joints — there’s some kind of mental line that’s crossed in losing a tooth.

Sometimes the only way through something is through it, so that’s where I’m at today. I’m out of viable options. Thankfully, I’ve got a good dentist. And since he’s the one who did the root canal initially, it’s only fitting that he is the one to “dispose” of it after all these years.

Hope the news that started your day is happier than what I had. Thanks for checking in.

Yet something else



Freshly off posting that my life isn’t just a series of health issues, here I go again.

So on Friday, I got up and had my cereal for breakfast and everything was fine. I had a sandwich and some grapes for lunch and everything was fine. My husband and I went to dinner that evening. I ordered pan roasted trout and my tooth hurt so bad that I couldn’t eat it. There isn’t much that’s more tender than pan roasted trout, so that tells you how sore that tooth was.

Woke up Saturday with the whole side of my face throbbing. It’s the first molar on the upper right, which is just in the right position to cause pain almost everywhere. I started on antibiotics just to be safe, and Tylenol. Lots and lots of Tylenol. Of course it was the weekend when I couldn’t get into the dentist and even if I could, I had a huge amount of work to do (worked 23 hours between Saturday and Sunday), so I couldn’t have carved out time anyway.

I remember precisely about 20 years ago being at a party and there was a bubble-gum blowing contest, and I bit down on a hard piece of bubble gum and heard/felt it crack. So that tooth has a crown on it and, subsequently, underwent a root canal.

My dentist worked me in on Monday morning early, then promptly sent me to the endodontist. For whatever reason, after performing great for two decades, the tooth/root canal has decided to go south.

You know, I didn’t even know they could “redo” a root canal, but that’s exactly what I’m having done tomorrow afternoon, once I get a couple more days of Amoxicillin in my system. The tooth is badly abscessed and apparently the only way to fix it is to drill through the crown, remove the old root canal, pack the tooth full of medicine until the abscess clears, then redo the root canal. The alternative is to extract the tooth, which doesn’t sound like a very good alternative.

What’s really weird is that my husband has almost the exact same situation in the exact same tooth. Except that his doesn’t hurt but they are going to have to do the extraction on him. I’ve heard about married couples that start looking alike as they grow older, but having the exact same medical situation is taking things a bit too far.

In the meantime, I alternate between plain Tylenol and Oxycodone every four hours. That takes the edge off, but not enough that I can eat anything more substantial than soup. Maybe I’ll lose those New Year’s resolution pounds after all.

Hope whatever news you’re getting from your healthcare providers is better than I’ve been hearing. Thanks for checking in.

It’s really not that bad



After my last post, I went back over some of the previous posts to see if I’d missed updating anything. OMG! It sounds like my life has been nothing but surgery recovery and doctors visits and medical tests. That’s not the case at all, so I thought I’d drop in a post about real life (vs. medicine).

I have been very busy with work (which is a good thing when you’re consulting). I’ve got a major project that has kept me working late hours and weekends (which is why I haven’t been posting much). Fortunately, RA is staying at bay, allowing me to do that.

The holidays were terrific. My husband and I had one of the most enjoyable trips to Las Vegas ever. Travel was a breeze, the hotel was great, we had an amazing meal at Sage at the Aria hotel, saw Penn & Teller (and heard Teller speak), and had the opportunity to rent a car and drive to areas around town we hadn’t visited before. My new knee, which wasn’t up to much when we visited in September, did great and I walked all over the strip without so much as a twinge.

We both had a touch of the crud between Christmas a New Year’s, but that’s pretty much cleared up now.

We have a major holiday coming up in the Spring so, on top of working 24 hours a day, we’re getting ready for that — and counting on both of us having good health to enjoy it. My New Year’s resolution is NO SURGERY in 2014 (after two in each of the last two years).

So my life really isn’t all about doctors and dealing with RA. There are some really good bits to enjoy as well.

Hope that whatever is going on in your life is also enjoyable. Thanks for checking in.

Pain is a four-letter word


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I’m a bottom-line, cause-and-effect kind of girl. You know, every action/equal and opposite reaction kind of stuff. Unfortunately, RA doesn’t always subscribe to the same theories that I do.

Pain is one of those things you learn about early in life. You get pinched as a baby — you hurt. As a child, you fall down and skin your knee — you hurt. But the hurt goes away. The pain heals along with the knee until both the skinned spot and the hurt are distant memories. Ergo, remove the cause (skinned knee) and the effect (pain) is also removed.

I saw my rheumatologist in December (and again today). It was my first visit since starting Cimzia and I wasn’t doing well. The Cimzia hadn’t yet started being very effective and I had finished the course of Mobic that I’d been on since knee surgery. So not only was I not getting full treatment for RA, I had lost the anti-pain and anti-inflammatory benefits of the Mobic.

I tend to equate pain with RA activity, kind of like that skinned knee of my childhood. Skinned knee = pain. Healed knee = no pain. Therefore if RA activity = pain, then no RA activity should = no pain.

I guess if I’d thought about it, I’d realize that’s not necessarily the case and so, during the conversation with my rheumatologist, I was caught a bit by surprise when she suggested something additional for the pain.

Unfortunately there is a lot of residual pain that comes along with RA. If a joint becomes damaged before RA is brought under control, that damage is going to continue to cause pain even if RA goes into remission. On a shorter-term scale, having RA means your joints or tissues are going to become swollen and/or inflamed. They don’t instantly revert to normal the moment that the RA calms down. It takes them a while to recover.

From that realization came the discussion with my rheumatologist that treating pain, although connected to treating RA, is a separate course of action. It’s something that I don’t necessarily think all doctors “get”. RA is a complex disease and there needs to be a multi-faceted approach to treating it. Not only do you need to attack the disease itself, there is the pain factor, and often other factors such as mental health and overall physical well-being that need to be addressed above and beyond the RA treatment plan.

In my case, we restarted the Mobic. While more an anti-inflammatory than a specific pain treatment, it can and does serve as both. My rheumatologist and I both agreed that I’m not a candidate for classic pain treatments — such as hydrocodone three times a day. My career is too challenging and lifestyle too active to be bogged down by these types of drugs.

My appointment today was much better than the last one. The Cimzia is taking effect although I can tell that it doesn’t quite “stretch” the full two weeks between injections. And the Mobic is helping. I had to go off of it recently for a few days and I could tell a real difference. So we’re continuing the Mobic and keeping the Arava/leflunomide at 20 mg per day as well as sticking (no pun intended) with the Cimzia.

So other than a miserable cold that my husband and I have been sharing, the New Year is off to a pretty good start.

Wishing you a pain-free 2014.


Where to start?


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It’s been a busy few weeks of doctors and I’m not quite done yet.

The day before Thanksgiving I had my first follow-up rheumy appointment since switching to Cimzia. I have to say that I’m probably on Santa’s “naughty” list. I could not tell that Cimzia was helping — at all. True, it hasn’t been three months yet, but it actually felt like I was losing ground. Cimzia is front loaded with the first three two-week dosages being two syringes before switching to one syringe every two weeks. Because my rheumy had provided samples, then I got a full “starter kit” with six syringes, I had extras. So after the first three “double” doses, I self-medicated and took a fourth double injection. (I know, I know, I know. Told ya Santa was bringing me coal.) I confessed all to my rheumy who really didn’t seem to think it was a big deal, but it was obvious I still had swollen joints. Interestingly the small joints in my hands and feet were giving me issues while previously it has always been my larger joints (hips, knees, elbows, shoulders). We decided to stay the course, but she added in 7.5 of Mobic twice a day. We decided that part of the issue is that I had been on Mobic during my knee recovery and I was no doubt feeling the effects of not being on it. I am doing better, but I don’t know if it’s the Mobic or the Cimzia is actually kicking in.

Then I had the follow-up with my spine surgeon checking on the progress of my spinal fusion surgery. Everything looks great. I am officially released forever (unless I should have any future issues). However, I talked to him about the tingling down my right arm and he believes it is most likely a pinched nerve in my neck that might be helped by a steroid injection.

He ordered an MRI of my cervical spine (to compare to one I had a couple of years ago). As it turned out, I was also scheduled for an MRI on my right shoulder to see if we can figure out why I’m having ongoing pain there. Both of those happened earlier this week and I was able to schedule them at the same facility at the same time. There was a bit of a last-minute scramble to make sure everything was pre-certified by the insurance company, but it all worked out.

So I saw the shoulder surgeon the day following the MRI. Nothing there that would account for the tingling sensation, but there is more arthritis in the joint since we did the second rotator cuff surgery in the fall of 2012 and there was quite a bit of fluid/swelling/inflammation in the bursa. So we did a steroid injection. It wasn’t one of those sub-acromial injections given by his PA, this was one of the deep, inside the joint, hurts like the dickens injection given by the surgeon. I only cried a little bit. It’s weird. My shoulder hurts from the injection, but it does feel better. Hopefully this will help. The surgeon said that at some point in the future I’m looking at joint replacement, but I assured him that we’re not there yet. I still have good range of motion and strength in the arm so unless that changes or the pain gets worse, I’m sticking with the original equipment in that shoulder.

So next week I go back to the spine guy to talk about the neck MRI. As badly as I love/hate steroid injections, I am definitely not looking forward to having my neck/spine injected. But the tingling is making me crazy, so I need to do something.

I also go in late next week for one of those once-a-decade tests that you get to have if you’re over fifty. Not looking forward to that, either, but at least I get a day off of work.

Then it’s Christmas. And the new year. And the new insurance. I was so happy when I got my new insurance card in the mail. With all the chaos caused by changes in the insurance laws, I was really happy to know that I had officially made it through the system and have coverage starting January 1.

I hope your medical schedule is less busy than mine has been and that whatever medical situation you find yourself in, it results in good news. Thanks for checking in.



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