Yes, we needed the rain. And rain it has, starting yesterday evening, going through the night, punctuating my dreams with flashes of lightning and rumbles of thunder.

With the rain came the low pressure system, and with the low pressure, the pain in my joints. It was my left knee — the one that may need surgery — that woke me this morning rather than Nature’s lightning show.

My appointment with my rheumatologist was at 9:00 — plenty of time to get in and out and to the office at a decent time.

But the rain had gridlocked traffic and she was running late. Then the receptionist sent back two patients — both with appointment times at 9:15 (after mine) before she called me. It was almost 11:00 am before I was seen. I was not happy.

But I love my rheumatologist because she listens to her patients. In fact that’s what she said when she reviewed my last two sets of labs that were squeaky clean, “Lab results are lab results, but we listen to our patients.”

If you’ve been following my blog, you know that I haven’t been doing well lately. A few rheumatologist appointments ago, I’d felt the Enbrel hadn’t been working as well, so we added the Arava. Then the last couple of appointments, I’d reached the point where not even the addition of Arava felt like it was helping. My rheumatologist referred to her notes, listened to my litany of complaints (including the MRI showing inflammation in my knee and the X-Ray showing arthritic changes in my shoulder) and suggested we change medications. She first asked me if I had any ideas (because she knows that I usually have done my research and have an opinion). I told her I really didn’t because I’d already been through Humira, Simponi and now Enbrel. So she has now introduced me to Orencia which, unlike Humira, Simponi and Enbrel, is not a TNF inhibitor. As it is in another class of drugs, hopefully it will have different results.

She also prescribed a steroid injection to “give me a boost” and wanted to put me on 5 mg of Prednisone for a while to help while the Orencia took effect. I demurred on the Prednisone partly because I want to be sure any beneficial effects are from Orencia and not the steroid and partly because I really am trying to lose weight and get in better shape. Prednisone definitely will not help me lose weight.

Two injections later (one the Orencia and one the steroid), I’m out the door with another Orencia sample and instructions to get labs done in four weeks and see her again in six. I was rather proud of myself that I gave myself the Orencia injection.

I hope this works. I am ready to feel better.

Two things I’m not sure I like about Orencia. The first is that while it is now in injectable form (rather than infusion), it comes in a standard hypodermic and not the slick injector pen form that I prefer. (I hate poking myself with the needle.) The second is that my doctor’s office is recommending that I get the Orencia via a specialty mail-order pharmacy. I’d prefer to use my local pharmacy, but they asked me to trust them that this was the best way to get the insurance worked out and be sure of a good supply of the drug as this pharmacy specializes in biologics.

Whatever. Either I trust my doctor or I don’t, and I do, in fact both like and trust my doctor. I just wasn’t mentally prepared for all of this morning.

So here I am. No longer on Enbrel. Now a new Orencia patient with hopefully a new/better chapter in dealing with my RA.

I hope whatever is new in your life brings you blessings of health. Thanks for checking in.

Let’s say one of your patients has been diagnosed with a disease. However, the lab tests that confirm and monitor the disease come back normal and the drugs used to treat the disease aren’t very effective.

You might wonder if you have the right diagnosis, wouldn’t you?

Okay, I’m not saying I don’t have RA, as there are multitudes of variations of the disease. But when the MRI on my knee shows severe inflammation and the X-Ray on my shoulder shows significant arthritic changes, and my labs come back clean, it does make you wonder. Add to this the increased joint pain and flares, and it raises the question of whether my drug cocktail is working.

I don’t know. I’m just really discouraged right now with all of this. I’d love to wake up some morning and discover that instead of RA I have some other something that has a clear treatment path — because this one has ceased to be effective.

I’ve been on MTX, Humira, Simponi, and now Enbrel plus Arava. I’m not sure what else there is to try. I have horrible veins and a strong vasal-vagal reflex, so I’m a poor candidate for infusion drugs.

But being sero-negative, I don’t have the luxury of lab results pointing to a clear diagnosis. Therefore, the diagnosis, and the treatment plan, has been based on deduction from symptoms. I know a lot of medicine is practiced that way — if it walks like a duck and quacks like a duck, then it’s probably a duck. It could be a mallard, a wood duck, a Long Island or even a Peking, but it’s still a duck. But then there’s always the tale of the ugly duckling that turned out to be something different after all. I don’t know what else I could have. I have played doctor and the self-diagnosis game, and I come up with the same results that my doctors do. It’s very frustrating.

And I guess  really don’t doubt that I have RA, it’s more wishful thinking that I might have some magical something else (hopefully that could be cured by six months on the beach in the Caribbean)…

My rheumatologist appointment is day after tomorrow, so we’ll see what she says.

Thanks for checking in.

Unfortunately, it appears that death also happens when you’re making other plans. My stepmother passed away yesterday. She had been ill a lot recently so it wasn’t unexpected. But expected or not, death is always shocking. It’s hard to believe that someone who has been a constant in your life for so long is no longer there.

She was probably one of the best people I’ve ever known in my life and one of the few people to be truly kind to me when I was growing up. The world is definitely a better place because she was in it. A teacher for more than 30 years, she also had four kids, eight grandchildren, and a plethora of great-grandchildren. She will be sorely missed, but there is no doubt that she has a long-lived legacy.

I will be offline this coming week traveling to attend the funeral.

Thanks for checking in.

I went in at 7:30 for my physical therapy evaluation for my left knee. The therapist’s impressions confirmed what the doctor had diagnosed (patella friction syndrome and patella subluxation). In addition, she indicated (1) that my knee caps are tilted — either as a result or contributing to the issue; (2) that my IT band tests normal, so that’s not the problem; and (3) the pain I have behind my knee is probably tendonitis of the hamstring tendon. The good news is that I opted for PT at the fitness center I belong to which is associated with the hospital. This means that we’re able to do pool therapy and also that maybe this will get me in the habit of showing up at the fitness center three days a week. It’s also in network, so after my deductible, the insurance will kick in for 90% of the costs. The bad news is that I’m very allergic to tapes and adhesives which makes me a poor candidate for taping the patella, which is a common procedure in these cases. But I am hopeful that the actual physical therapy will improve matters.

The second appointment was with my shoulder doc. I had my annual follow-up on my left shoulder replacement and a follow-up on my right shoulder that’s been bothering me.

The left shoulder has been doing fine since remedial surgery a year ago except that it’s a bit loose and will rattle when I do certain activities like wash my hair. The bottom line on that is if it doesn’t hurt when it rattles (which it doesn’t), it’s okay. I go back in a year for a regular checkup.

The right shoulder is not so great. X-rays show increased arthritic changes in it. They wanted to do a deep injection this morning, but frankly, I was doctored out by that time and need to get to the office. There’s an open invitation to show up for the injection any time I want it. The really bad news about the right shoulder is that while the injection will no doubt help the situation in the short term, in the long run, we’re probably looking at replacing that shoulder as well. Not next week or next month or even next year, but one of these days.

So I feel like I’m making progress even though all the news I got was good. I at least have a plan that offers some improvement.

Next week is my rheumy appointment (and my annual mammogram). It will be interesting to see what my rheumy has to say about the increased arthritis in my knees and shoulder on top of the increased pain and stiffness and mini-flares I’ve been having.

(What’s making me really miserable is this friggin’ head cold I’ve come down with. I don’t feel bad enough to stay home in bed, but I don’t feel good enough to be at work. Yuk!)

I hope that your pieces and parts are doing well. Thanks for checking in.

I’m the other way around (sort of). The question/comment I get most often is, “What happened to you?” I get asked this a lot by airport security personnel, MRI staff, and similar folk when I explain that I have an artificial hip and an artificial shoulder. I get to disclose all the metal in my body on a regular basis and when I do, it never fails to raise eyebrows. I “don’t look old enough” for joint replacement, so it usually begs the question. (As if it’s anyone’s business — maybe my ex-husband[s] beat me …)

There are other, less cordial times that the subject comes up, like when I beat on the handicapped stall in the ladies room at the office (when all the other stalls are empty) and yell, “I have an artificial hip. I’m supposed to use this stall. Get the f— out.” Not really. Well, okay, occasionally. But only when I hear someone in there talking on their cellphone when I’m doing the “I have to pee dance” outside the door. And I don’t use profanity (and least not out loud).

The point being that through these comments and questions, we are given the opportunity to educate the ignorant. Most of the time I just give the short answer and go on with life. I figure medical staff have either a rudimentary knowledge or at least the resources to learn more and I just want to get through airport security as quickly (and noninvasively) as I can.

But in “marketing speak”, we should all have an elevator and an escalator pitch about RA. Or, in 21st century terms, a twitpitch (http://www.businessweek.com/smallbiz/content/may2008/sb20080516_673078.htm). And let’s don’t forget the adjectives. Before anyone can start to understand anything, they need to start to feel it. Take the descriptors out of the following sentence and see what I mean: Rheumatoid arthritis is a terrible, potentially disabling disease, that affects people of all ages and ethnic backgrounds.

After that opening, you can add one or two more (concise) sentences, depending on the interest level. The second and third sentences might be, “RA can cause debilitating pain and irreversible joint damage. Although it’s incurable, there are some very cutting edge drugs that, although they have their own potentially severe side effects, show promise of slowing the progress of this devastating disease.”

So instead of fuming or rolling our eyes when we get one of those remarks, give them your twitpitch. It will provide you some satisfaction in that you’ve actually provided some valuable information (without having to think up a response on the spot) and (in some cases anyway) the other person might learn something.

I hope that whatever twits come your way are of the harmless variety. Thanks for checking in.

While there are surgical options, as an initial step I’m going through four weeks of physical therapy. If that doesn’t work, my doctor can relieve/reduce/remove the fat pad behind the knee cap (Hoffa’s pad) and also release some of the “pull” on the knee cap that is keeping it from working properly.

At least I have a diagnosis and a plan. With RA, I’ve had X-Rays and MRI’s come back looking perfectly normal with the RA causing all the pain and aggravation. It’s discouraging when that happens because you begin to think (and sometimes your doctors also think) it’s your imagination. This is particularly true before you have your diagnosis and know one has a real explanation for what’s going on.

Trust me, with my imagination, I could think up something a lot more fun than joint pain!

I hope your imaginings today take you to far and wonderful places. Thanks for checking in.

Happy reading. Thanks for checking in.

Unless something drastic happens in the next, few, final hours of the year, I’ll have kept my resolution to stay out of the hospital / surgery suite for a year. This is the first resolution I’ve managed to keep, I think, ever.

After I had hip replacement surgery in 2008, I told my husband I was swearing off surgery — that I would just learn to live with whatever was wrong with me. It wasn’t that the hip surgery was bad — it wasn’t. It’s just that it had been the latest in a long series of surgeries and I was tired of always recuperating. That resolution didn’t last long. About six months later I had shoulder replacement surgery, followed about a year later with two more shoulder surgeries, one for a rotator cuff tear and the second a few months later for remedial surgery on the shoulder replacement. You can understand my 2011 commitment to stay away from surgeons.

As I look toward 2012 I am at a quandary about what resolution(s) I should try to make for the year. I have little hope that this will be a surgery-free year. And yes, like a lot of us, I need to eat less and exercise more, but I’ve made (and broken) that resolution more times than I care to count. I can’t resolve to be better to myself because if I were any better to me, I’d be a spoiled brat.

But what I can resolve to do is be more mindful of my health. I will remind myself that my health doesn’t come second to career or my long to-do list; that sleep is more important than watching that late-night television show; that even a little bit of exercise is better than none; and that, even with replacement parts, this is the only body I’ll have in this lifetime, so I should take care of it.

(Of course, if there is chocolate involved, all bets are off!)

I hope your resolutions will bless you and yours with health and prosperity in 2012. Thanks for checking in and have a happy new year.

Yesterday I had my annual check-up with my dermatologist (everything fine there) as well as my every-two-months lab work. Earlier in the month I had dentist appointments to replace a crown and saw my orthopedic surgeon to have my knee injected. The injection didn’t work so today I’m getting an MRI on my knee.

Which brings us to January. I have the follow-up appointment to review the MRI results, my annual checkup on my shoulder replacement and follow up on my left shoulder that was injected in November, my mammogram, and my regular rheumatologist appointment. I’ll probably also have to see my dentist to get the new crown adjusted.

Yikes! What a way to end/start a year!

I hope that your year ends with peace and happiness and that 2012 is filled with good health. Thanks for checking in.

One of the highlights of the trip was meeting Chef Scott Conant, a celebrity chef that’s hard to miss if you watch the Food Network Channel at all. We

Chef Scott Conant

 had stopped in to confirm our dinner reservations at his restaurant, Scarpetta in the Cosmopolitan resort, and he was standing by the front desk. He was very gracious, but it was a shock to turn around and see someone you recognize from television.

We stayed at the Vdara Hotel, which was wonderful. The accommodations were great and the spa where we indulged in a massage was very nice.

There were a couple of downsides. My knees gave me a lot of trouble. The steroid injection I had before we left doesn’t seem to have helped and I’m going to schedule the MRI to see if there is anything but RA going on. Of course, I did a lot of walking — probably 2-3 miles a day, so that didn’t help things.

We got a nice surprise on the trip back. Both my husband and I are signed up for TSA’s Global Entry Program (GOES) and completed the enrollment for the trusted traveler ”fast lane” entry through American Airlines. It lets you bypass some of the yucky parts of travel — like taking off your shoes and taking your 3-oz bag and your computer out of your suitcase. We weren’t aware that they had implemented the special lanes at Las Vegas, so it was a treat. Of course, I still had to be scanned since my hip and shoulder replacements trip the metal detector, but it was nice to skip some of the other tediousness of air travel.

I guess the really bad news is that on Christmas day we got word that my step-mother was admitted to the hospital. She has not been in great health for the last few years and she’s been in the hospital multiple times in the past few months. She’s over 80 and even small things can become quickly serious. I remain optimistic that she’ll recover in good time, but it is still a serious situation.

Now it’s back to reality and work, although the office is down to a skeleton crew this week between the holidays. I’m treating myself by coming in a bit later in the morning and only working 8 hours a day.

I hope your holiday celebrations were joyful and that those you love were blessed with good health. Thanks for checking in.