2, 5, 1

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The title is shorthand for I just got back from two weeks in Washington, DC; I passed my five-year blogaversary, and I’m one day away from total knee replacement surgery.

Sorry that I’ve been off the grid for a while, but I have been in DC for business for the last two weeks. It was long hours at work and living in a hotel room. It wasn’t all bad, but it was being away from home for longer than I’d like. Also, dealing with baggage when I’m still not supposed to lift more than 15 pounds (because of my recent back surgery) caused some interesting logistical issues. But it all worked out. My husband was able to come over the Fourth of July weekend, which was great. Complicating the trip was the fact that I’m off my RA meds getting ready for surgery tomorrow. Between the job stress, ever-rainy weather, a different bed, restaurant food 3X a day, etc. etc., I was surprised that I didn’t have a major flare. But I’ve made it home safely and don’t know that I’ve ever been happier to be back from a trip.

While I was gone, I passed my five-year blogaversary. I hate that it passed in the blur of working 16 hour days, but it’s quite an accomplishment. I never thought I would be blogging this long. But life does keep on changing with RA so it seems like there’s always something to write about.

And one day to knee surgery. I’ve got a full day of things to do before surgery tomorrow. The medical equipment guy has been here and brought the continuous passive motion (CPM) machine and my ice system that I need to use after I get home. Sigh. I guess I ought to be happy that I have nice new toys to play with.

So that’s all I know. It seems like the last few weeks have been a blur. And the next few weeks will be on drugs. I do hope to chronicle the journey of the knee surgery on a regular basis. I know it’s helped me to read other peoples’ experiences with their surgeries and recovery.

Thanks for checking in.

Cause, Effect, and Prevention

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I follow several blogs and one of my favorites is Living with RA written by Andrew. He not only conveys a lot of valuable information, he does it in a very personal and personable way. Andrew recently wrote about the compelling evidence demonstrating that RA has a negative effect on muscles.

I don’t doubt that RA impacts our muscular system. In fact, if you ask any RA patient who has been diagnosed for any length of time, I’d bet they’d agree.

What is not clear to me, however, is how much is cause and how much is effect. Since I was diagnosed (five years ago this month) I’ve had a hip and shoulder replaced, had three shoulder surgeries, one knee surgery, and I’m scheduled for total knee replacement in two weeks. The pain and disability that the surgeries cured, along with the recovery periods (sometimes months) have definitely slowed down my activity level. I used to walk three miles without thinking about it. Now there are days that I can’t walk across the parking lot. This drastic decrease in exercise has certainly lowered my fitness level.

Is there additional impact directly from the RA? Probably, but how much is hard to determine.

But what I have learned is that sometimes a little prevention goes a long way. My husband and I recently took a few days off. I knew there would be more activity than I’m used to and with sleeping in a strange bed, eating outside my normal diet, etc., I could potentially have a flare. So I started a prednisone taper at the beginning of the trip. I not only had more control over the inflammation, I had more energy and enthusiasm for the vacation.

Don’t get me wrong. Steroids are powerful drugs and I am in no way proposing that people take them indiscriminately. But I do think they have their purpose if used wisely and used well. And I believe that they can be used to prevent a flare just as easily as they can be used to recover from one. (Fellow blogger Andrew is like me with a love-hate relationship with steroids, but his is more a hate-hate relationship.)

Unfortunately, I’m paying the piper. I no sooner got home from vacation than I’ve had to travel two weeks for work (long hours, strange beds, bad food — again), which is why I haven’t posted for a while. I am off my RA drugs getting ready for knee surgery in two weeks. And, of course, it’s been raining every day that I’ve been here and will continue to do so for the foreseeable future. And because I’m this close to surgery, I can’t take NSAIDS and I can’t take prednisone.

All I can do is try to take the best care of myself that I can.

Sometimes that’s all any of us can do.

In the meantime, I hope that whatever “causes” you have in your life have brought happy effects. Thanks for checking in.

No surprises here

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As expected, my knee guy didn’t have any more miracles stashed up his sleeve, so total knee replacement surgery is scheduled for mid-July — the guiding time elements being that I have to be off Orencia two weeks before surgery and I have to be recovered from surgery enough for our trip to London in mid-September.

Even though I expected this outcome, once we made the decision to move forward with the surgery I felt sad. I thought that was a strange emotion as I know the surgery will greatly improve my quality of life and how I feel on a daily basis. I don’t know. Maybe I felt like RA had won yet another round. I’m starting to look and feel a bit like Sylvester Stallone at the end of a Rocky movie where’s he’s been beaten to a bloody pulp.

I really like my doctor and, since we’ve been through so much already, we’ve developed a good relationship. I try to ask intelligent questions and he’s more than happy to take time to explain things without talking down to me or sugar coating anything.

He showed my latest X-ray that revealed even more joint damage than the X-rays just a few months ago. There was also a large area of “effusion” (i.e., swelling) that showed up clearly on the X-ray. And when he examined my knee he said that I have a large Baker’s cyst in back. My doctor says that knees are dumb and that when they don’t know what to do with something, they make a cyst. A Baker’s cyst is basically an overflow reservoir of synovial fluid from the knee. As much as my knee hurts, I’ve expected it to be swollen to the size of a grapefruit. Apparently instead of swelling, the extra fluid has apparently been shunted off to this cyst.

If I have any concern it’s that this will be the fourth time I’ve gone off Orencia. For some reason, some people find their RA meds don’t work as well after they’ve gone off of them, then back on again. It’s strange that I’m not concerned about the surgery or recovery. I guess I have confidence in my surgeon and I’ve been through so many surgeries, I know what to expect. But I have about a month to get nervous about the actual surgery, so I’m sure those fears will come in due time. I’ll deal with them then but I don’t plan on wasting any time on them in the near future. :-)

I hope any news that you get is what you expect. Thanks for checking in.

About my quest to be the Bionic Woman

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rainbow 2The recent storms that brought such devastation to Oklahoma and elsewhere in Texas have provided the benefit of some much-needed rain for Dallas. I was lucky enough to capture this amazing rainbow close to my house after one of the recent storms. I’d intended to write an inspiring post to go with it — even had some great topics picked out. Unfortunately, I’m not feeling particularly inspirational, but I wanted to share the picture with you regardless.

The Euflexxa injections have quit working on my left knee. After more than two months of being blissfully pain-free, I am now back to hobbling around, barely able to put any weight on it. The Euflexxa started working immediately after the third injection. I woke up the next morning without any pain and, other than the occasional twinge associated with my RA acting up, I’ve been doing great.

The pain came back just as suddenly. One day I was fine — Cinderella dancing at the ball with her glass slippers. The next morning my coach had turned back into a pumpkin and I sat in the kitchen ashes as a cast-off step-child. It’s been about a week now. I thought it might be a temporary fluctuation, but each day seems to get a little worse — I guess as the Euflexxa continues to wear off.

So I go back to see my orthopedic surgeon in a couple of days. We were hopeful that the injections would work six or seven months. I guess I should be thankful that it relieved the pain during the time I had and recovered from back surgery. Unless my doctor has some other miracle tucked up his sleeve, we’re headed for a knee replacement.

Given that I already have had a hip and shoulder replacement, I’m quickly running out of things to replace and just as quickly headed for my transformation into (drum roll, please!) Bionic Woman. Maybe I’ll sponsor a contest to design a cool Bionic Woman Super Hero outfit.

I’ll provide an update after my appointment in a couple of days. Until then, thanks for checking in.

 

The way we were

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Last week was my birthday. As birthdays goes, it was fine. As they say, it’s much better than the alternative.

It’s interesting that when I talk about age with people from 30 to 70 years old, the standard refrain is, “I really don’t FEEL any older than I did at XX”, with XX being a number several years younger than they presently are. I know that I’m not the babe I used to be, but I still work lots of hours every week, take wonderful vacations when I can and overall enjoy life. Generally, if you asked me, I’d say that neither age nor RA have taken away much, if any, of my quality of life.

But birthdays have a way of making you stop and reflect.

It’s true that I, like many newly diagnosed patients with RA, read everything and believe that we have a good chance of being disabled within five years — or at least being sidelined from many of the things we enjoy. That was obviously an incorrect prediction on my part, but when I stop to reflect on the things RA has brought to my life, it does make me reassess the impact RA has had.

I have a new hip, a new shoulder, screws in both arms, and a rod and screws in my spine. I’m expecting a new knee any day now. (When I die, they’re not going to bury me, they’re just going to turn me into a hardware store.) In addition I’ve had multiple rotator cuff and other shoulder surgeries, countless hours of physical therapy, and more prescription pills and injections than you can count. I have a wonderful litany of doctors and surgeons I didn’t even know existed five years ago.

But I have to be thankful that in spite of (or more accurately, because of) all this medical hoopla, I’m still active, productive, and reasonably happy. If it weren’t for caring doctors, medical science, and good insurance, the prediction of my health and well-being I made when I was first diagnosed would probably be true.

So when I blow out the candles and make a wish, I wish for good health and give thanks for the complex medical machine that has allowed me to keep as much health and lifestyle as I have.

I also wish that today brings you health and happiness as well. Thanks for checking in.

Comments, please


I consider myself a fairly private person. I had a Facebook account for about two weeks, then cancelled it. I don’t tweet. I do have a Linked-In account, but I consider that in the same vein as I do the website for my consulting business. The fact that I’ve been blogging, and following RA blogs, for nearly five years is a testament to the great value that I find in sharing information and feelings among a group of others that “get it.”

I regularly follow about 15 blogs. Five or six of those are “friends” that I’ve following regularly for a number of years. Others I check in on occasionally or subscribe so I don’t miss their less-frequent posts.

I’m not much of a commenter and when I do it’s either on one of the 15 “regular” blogs or a new blogger that I’ve found and I comment to let them know that I’m new to their site and how I found them. I especially don’t comment much on blogspot because I hate typing those “prove you’re not a robot” words.

Occasionally, to the point of rarely, I run across a provocative blog where I have a differing opinion and feel compelled to provide a different perspective. I’ve always tried to do this respectfully. I would never minimize someone else’s opinion (especially on THEIR blog). I approach it by stating that I understand and respect their opinion/thoughts/feelings/conclusions, then suggest another way to look at the situation is XYZ.

More often than not, my comment is not approved. It never appears.

On one hand, I completely get it. A blog is a personal space that provides a forum for an individual to post their personal thoughts and opinions. Bloggers are under no obligation to post ANY comments whether they agree with their viewpoint or not. On the other hand, it is a public forum which, by definition, invites a certain amount of conversation and it is to be expected not all that conversation will be 100% consistent with the blog’s author. As long as the comment is done with respect and within the confines of good taste, should bloggers allow differing viewpoints?

I’m interested in your thoughts. If you have a blog what do you do? Have you ever had a comment that was “rejected”? Your comments are welcome.

Thanks for checking in.

Doctor Week

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In addition to the rheumatologist visit mentioned in my previous post, I had visits with my back surgeon, my knee surgeon, and my dentist. I’ll forego any discussions of the dentist as it was a routine, six-month clean and check and other than the discomfort of laying in a dentist’s chair for an hour while in a back brace, there’s not much to report.

I already reported some of the information from my rheumatologist visit. We decided to keep me on Orencia and 20 mg. leflunomide (Arava). We may cut back to 10 mg. of leflunomide once things get back to “normal” after the back surgery. One of the issues I’ve been having due to my back surgery is bursitis in my right hip from so much time resting in bed. It has been interfering with my ability to sleep. She had injected my left hip for the same reason before surgery and so she was agreeable to taking care of the right hip during this visit. It worked great and I’ve been getting a decent night’s sleep without drugs the last several nights since then.

The visit to the back surgeon went swimmingly. I had an X-ray beforehand and he was impressed that I’m already showing bone growth in the fusion area. They were amazed that I’ve been up driving and working and not on pain medication. I am confined to this blasted brace until the end of July, although starting mid-bone growth simulatorJune (which isn’t that far off), I can start weaning myself out of it. That will definitely be a relief. I can also now lift up to 15 lbs. and can increase the length and types of exercises I can do. (I guess anything more than nothing would be an increase, wouldn’t it?????)

I also have to continue to use my bone growth stimulator once a day for three more months. As you can see from the picture to the left, this thing looks like a steering wheel. It straps to my back on a belt and the little control box turns it on for 30 minutes at a time. I know that my husband secretly wants to drive me around the house like a kiddie car every time I put it on. You can’t tell that it’s working because you can’t feel anything. But my insurance company paid thousands of dollars for it (I know, can you believe it?), so I’m determined to get whatever value there is out of it although I have to admit that I do have some trepidation of having electromagnet waves so close to things like my kidneys and liver and other important bits.

Finally, I had the follow-up with my knee guy after the Euflexxa injections. The injections have worked wonders. On the day of the appointment, I walked from one end of the enormous medical campus to the far side where his office is and back again to my car. This is a far cry from me hardly being able to walk across the parking lot before the injections. So he and I are both really, really pleased. The big question is, what’s next? Eventually the knee will have to be replaced. It’s a question of whether I do it this year or perhaps do another round of Euflexxa injections when this past one wears off. On one hand, it will cost me thousands of dollars less this year because I’ve already met all my deductibles. On the other hand, after this back surgery, I’m not sure I’m up for any more repair work on my body in the near future. My doctor is agreeable to whatever course of action I want to take. I’ll just have to think about it.

So basically all things are good. No cavities, healing well, doing well, and RA has generally stayed at bay. I hope your life is also going well. Thanks for checking in.

The $64,000 Question or why I love my rheumatologist

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There is a common wistful thinking among children who either dream or wish or even believe that they are secret offspring of royalty or rock stars or perhaps anyone who is cooler, richer, and/or more attractive than their real parents. It’s the “how can parents as boring/broke/mean like mine have a child as cool/beautiful as me” syndrome.

In the RA world, there is a similar contingent of people. We’re the RA negative group and the group whose labs come back solidly normal/perfect every time. We’re the ones where there is no hard evidence from a diagnostic tool aspect that we are anything but healthy. At the back of our beady little minds (or at least MY beady little mind), there is the haunting question of, “What if I really DON’T have RA? What if I have something else?”

My current rheumatologist didn’t diagnose me. I changed after I got fed up with the office practices of my original doctor and switched. I haven’t looked back, nor have I looked further.

So today was my regular follow-up visit and I asked the $64,000 Question. (For those of you who are younger than ancient, decades before “Do You Want to be a Millionaire”, there was a similar program called the $64,000 Question. Same concept, different pay scale for a different time.)

The question was, as she didn’t diagnose me, after treating me for more than four years, would she give the same diagnosis of sero-negative RA — particularly in light of all my tests being normal?

She explained that during her fellowship training, she worked with a senior physician who impressed upon her that labs and other tests are fine, but they’re just a piece of the overall puzzle. It’s important to spend time with patients and listen to them. Doctors must learn about the patient’s experiences with the disease — both mentally and physically. If a patient doesn’t feel like they’re doing well with a treatment, then they probably aren’t, regardless of tests. And that’s what she does.

In answer to my question, she pointed out that when I’ve been on the biologics I’ve felt better. When I’ve gone off (either by choice or because of surgery), I had issues with joint swelling, pain, stiffness, etc. After four years of observing this pattern and listening to me describe my symptoms (and my feelings about them), she said that she was very comfortable with a diagnosis of inflammatory polyarthritis. Is that the same thing as my original diagnosis of sero-negative RA? In the strictest sense, probably not, but the symptoms are similar and the treatment is basically the same.

And because she listens to me, I have confidence in her, and I feel confident that my treatment is in good hands. I no longer feel like I’m really the secret descendant of royalty. I feel like I’m where I’m supposed to be.

To me, confidence in your health care providers is a key component of anyone’s well-being. For anyone with a chronic illness — it’s critical. If you have anything less than that, then I would encourage you to investigate further. It’s in your own best interests to do so.

Thanks for checking in.

It’s about time …

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First, let me just say that I continue to recover well after back surgery and that the Euflexxa injections in my knee have continued to work wonders. I will update more on the health issues in a separate post.That aside, I thought that I would FINALLY post some pictures of the remodel that we did. We have a small, galley kitchen, so below are right side and left sides of the kitchen — all new tile, cabinets, lighting. Also is a shot of the dining room with the new hardwood floors and the master bath with the new accent tile. Unfortunately I don’t have good shots of the new carpet or guest-bath tile. I’ll leave those to your imagination.

Enjoy:

Tile accent wall outside of shower.

Tile accent wall outside of shower.

 

Dining room with new hardwoods.

Dining room with new hardwoods.

New kitchen.

New kitchen.

New kitchen.

New kitchen.

A week after surgery

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I feel almost like there ought to be a town crier going through the streets proclaiming, “She lives!”

Actually, surgery went smoothly, I did great and was discharged from the hospital about 24 hours after I went in. Surgery was about three hours long and I was doing so well that they lifted the “liquid diet” decree and I got to eat roast beef and green beans for dinner.

Before Surgery

Before Surgery

I can tell the surgery “fixed” the problem. You can see from the image study before surgery that the disc was completely herniated and the vertebrae were badly degenerated. My surgeon said that the disc was just completely gone between the two vertebrae and I was rubbing bone on bone.

They cleaned out the remaining disc material, inserted some “spacers” to give space between the vertebrae, put in a rod and screws, and fused the vertebrae. Much, much better.After Surgery

 
After Surgery

There has been some discomfort, but little pain. I had one bad afternoon where the swelling around the surgery combined with sleeping in an odd position caused me to have incredible shooting pains down my left leg. I could barely move it, much less stand on it. The doctor’s office called in a Medrol taper and within 12 hours, it was 180 degrees different.

There have been other issues. My allergy to adhesives has left my backside raw and bleeding in some places and difficult to find a place to secure dressings on the incisions. Right now I’ve reverted to using strips of Press and Seal wrap instead of any kind of tape.

But overall, I’m doing great and glad to be on the mend. I appreciate all the healing thoughts and well wishes sent my way. Thanks for checking in.

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