What the Q?


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Okay, now that I’ve updated you (probably ad nauseam) with my back and knee surgeries, I’d like to share with you what’s really on my mind. (I know. aren’t spinal fusion and total knee replacement surgeries enough?)

Imagine you’re me in the pre-op waiting room getting ready for knee replacement surgery. You have to get there two hours before surgery, most of which is spent just waiting interspersed with the occasional person who comes in and pokes you with something sharp. It’s a very stressful situation. You’re worried about the surgery. You’re worried about pain and recovery. You’re worried if your new knee will work as it should. You’re just generally worried.

The surgical center I chose has an internal medicine group that monitors your overall health while in the hospital. They come in during this pre-op time to discuss any concerns and let you know that they will be part of your medical team.

In this case, I had a very pleasant lady MD who reviewed my current medical conditions (including RA and Sjogren’s) and what health aspects would be monitored during my two-night stay at the hospital. Then she asked me when I had my heart attack.

Excuse me?

She said that my electrocardiogram submitted with my medical clearance showed a Q wave. A Q wave is basically the lack of electrical activity in the heart and this is normally caused by scar tissue (which does not conduct electricity) that is formed as a result of a myocardial infarction, i.e., heart attack. The EKG had been faxed so the information wasn’t very clear, but it clearly stated a Q wave was present.

Of course I was just trying to catch up on what a Q wave was and (on top of worrying about everything else) digest the fact that I might have a damaged heart and/or a condition that could be conducive to future heart attacks.

She went on to say that this appeared to be an artifact — which is evidence of a previous heart attack, not something that was occurring during the EKG. She went back and pulled my medical clearance from April when I had my spinal surgery and the same Q wave was also on that EKG.

She did go on to tell me that a Q wave associated with certain leads of the EKG are normal but because of the quality of the fax, she couldn’t be certain of which lead was associated with the issue. However, she encouraged me “strongly” to see my cardiologist to get checked out once I was recovered enough after surgery.

I honestly don’t remember having a heart attack, but I’ve also heard of mild or silent heart attacks where people don’t even know they’re experiencing one. I can think of a couple of times in the past year or so when I’ve had symptoms similar to those associated with “silent” heart attacks.

And of course, there is the whole RA-cardiac connection that is gaining more and more recognition in the medical community.

She also pointed out that my cholesterol was extremely high and I needed to discuss this with my PCP or cardiologist after surgery as well.

On one hand I am just reeling from all this news. On the other hand I am really upset with my PCP who did not proactively discuss this information with me prior to my finding out about it from a complete stranger.

But then they came in to give me happy juice and roll me into surgery so I didn’t have time to really process everything then.

I am hopeful that all of this is just a combination of a bad fax copy and an over-zealous internist. But just in case it isn’t, I have an appointment with my cardiologist next week. He will be able to take a new EKG and immediately see what’s going on. And if there is any question, we can do a stress test or other diagnostic procedures and really figure this all out.

In the mean time, I have one more, potentially serious, health issue on my mind.


I appreciate you letting me vent all this stuff. I’ll be sure and let you know what the cardiologist says. Thanks for checking in.

More doctor updates


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I think we should just rename “August” to “Doctor” to commemorate all the doctors’ appointments I seem to have accumulated this month. I have appointments with five doctors (plus another the first week of September), lab work, at least one X-Ray, seven physical therapy appointments, and a “drop-by” to drop off a form to get some medical records transferred. And that’s if none of the doctors schedule any additional tests (which I am expecting). As a good friend quipped recently, it’s hard to throw a dart at a calendar without running into one medical appointment or another.

But I’ve made it through three important check ups with generally good results.

I saw my back surgeon for my second follow-up and things are looking good. My spine is showing new bone growth where it’s been fused (which is a good thing). I am now officially cleared to lift 25 pounds (up from 15) and in October that increases to 50 pounds. I don’t think I can lift anything more than 50 pounds anyway, so I don’t know that I really care about what comes “next.” I am supposed to continue using my bone growth stimulator – mainly as I was so bad about using it the last month I was supposed to. With being in Washington, DC for two weeks for work followed immediately by knee surgery, using the device was pretty much on the bottom of my list.

As reported in my previous post, I saw my knee surgeon for a follow-up and now have my physical therapy sessions scheduled — the first session starting the day after tomorrow. I have them about three times a week which, if nothing else, will get me up and out of the house on a regular basis. That has to help with the stamina issue. I have alternating therapy in the pool and in the gym, which I think is a good schedule that gets some “hands-on” therapy in the gym but also provides some therapy in the pool which will help protect my healing back and all my RA-affected joints. I don’t feel like I am progressing as quickly as I should and am hopeful that being back with a therapist will help me get back on track.

Finally, I saw my rheumatologist yesterday. Like Andrew and Pollyanna Penguin, my cholesterol levels have been escalating. Even though my HDL/LDL ratio is still holding, my total cholesterol and my “bad” cholesterol are way out of control. I haven’t changed my eating habits and my weight has been stable. My cholesterol jumped 60 points in three months — fairly consistent with when I increased to 20 mg of Arava from 10 mg. (You would expect to see a parallel jump in my weight with that kind of increase, but that hasn’t happened.) So I charted all this out and took it with me to the appointment. My rheumatologist discounted my Orencia or Arava causing the increase in cholesterol and instead cited several reasons why this “blip” might be an anomaly — many of them related to my recent surgeries and resulting decrease in physical activities. She didn’t really comment on the potential link between RA and metabolic syndrome — which could lead to these results. However, I am also scheduled to see my PCP and my cardiologist in the near future (more on this in a future post), so I will continue the discussion with them. My cholesterol is hovering close to 300 (100 points above where it should be) and with a history of heart disease on both sides of my family, I need to figure out what is going on. I have taken a hard look at my diet and made some immediate changes and the scheduled PT will help make me more active. However, I can’t help but feel that something else is contributing to the issue.

I fully subscribe to being an active participant in my health care and think it is incumbent upon me to help manage the content of my doctors appointments — making sure that we discuss things are important and getting answers to issues that concern me. Doctor’s memories are just as good as their notes and sometimes those aren’t very good even if they take time to review previous appointment discussions. Sometimes the patient needs to remind the doctor that, “Last time we spoke about X and if it didn’t improve, we would discuss Y.”

But I will tell you that with this many doctors’ appointments in a row, I sometimes feel like I’m herding cats!

I will continue to update you with progress with the doctors, although sometimes you have to wonder about spending so much time and money just to have someone tell you that you’re doing fine. :-) I appreciate you checking in.


Surgery +3 Weeks


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Before I catch you up on the health news, please let me just say that I’m feeling exceptionally privileged. This blog has been selected again for Healthline’s Top 20 RA blogs. I often feel a lot like Groucho Marx who quipped, “I don’t care to belong to any club that will have me as a member.” But in this case, I top 20 RA blogsomehow made it among the ranks of many who I feel represent the best of the best of RA bloggers. It’s certainly worth your time to visit the terrific group of bloggers who made the list. Thank you, Healthline, for the honor and for all the great information you provide.

So today was a follow-up with my knee surgeon. His normal schedule is a follow-up appointment at 30 days. Because of the excessive swelling I had, I saw him one week after the surgery and now again two weeks later.

I’ve always recovered well from surgery and felt like I was doing okay this time. I’m not quite where I’d like to be, but I put that down to being impatient. The doctor says I’m behind what’s considered normal, but I’m pretty much on track for a patient with rheumatoid arthritis. There’s still some swelling in the knee. I have good extension, but I’m only just past 90 degrees on flexing my knee. You need to be at about 125 degrees to get up and down out of a chair or out of a car comfortably, so I still have quite a bit of room for improvement. He prescribed some additional physical therapy, which will be outpatient (I go there) instead of home health (where the therapist came to see me). There’s a facility that I really like that has a therapy pool so I will go back there. The therapist also works with you the entire time of your appointment instead of some places I’ve been where they just sit you on an exercise machine and tell you how many reps to do then leave to go do something else.

Tomorrow I’m driving for the first time. I have a final check up with my back surgeon and my husband is not able to take me. I am much less nervous about driving than my husband is. Honestly I think I’ll be fine with the mechanics of operating a car (even in Dallas traffic). If I have any concerns at all, it’s that I still get quite tired with just a bit of exertion. Spending 2-3 hours getting dressed in “big girl clothes”, driving across town, getting an X-ray, then sitting around a doctor’s office will no doubt tucker me out. His office is close by the physical therapy facility so I had also planned on stopping by there after my doctor’s appointment to get my sessions set up.

And when I think about my knee recovery, I have to remember that I am still recovering from the back surgery I had just a few months ago. I’ve probably overtaxed my “recovery genes” to the point that I’m probably not as able to bounce back as quickly as I’d like.

I think the only other news is that I was surprised a couple of days ago when the medical equipment rental company called to tell me they were picking up my continuous passive motion (CPM) machine and ice system. Apparently the insurance company will only pay for three weeks of use. I was using the CPM four hours a day. Now I need to find some active exercise to replace what I’ll be missing. I did go ahead and bite the bullet for the ice system (although I found the exact same one on Overstock.com for $80 less ….).

I was feeling pretty abandoned because the day they took the CPM was also the last day of my home health physical therapy visits. So I guess it’s good that I have additional physical therapy ordered to help keep me on track.

Pain levels are good and I am walking around the house without a cane or other assistance so I am making progress. I started back on my Arava last week and had my first Orencia injection a few days ago, so that should help me feel better overall as well. Now it’s just a matter of time and work to get back to 100%.

I think that’s something to think about and a topic I thought about doing an entire post on. If you have other kinds of surgery — say you have your gall bladder or your tonsils out — you have the surgery then you kind of lay around and take it easy until you feel better. When you have a joint replaced, the surgery is the easy part. The real work starts after surgery because you have several weeks of dedicated exercise to make sure that you get the full benefit of the joint replacement. It doesn’t do a whole lot of good to have the surgery if you’re not willing to put in the work afterward.

So I’m doing well (at least for a Class-B RA patient …). I’m ready to be up and about and that counts for a lot.

Again, I appreciate the well wishes and warm thoughts. Thanks for checking in.


Two weeks after surgery


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Okay, so it’s been more than two weeks after surgery (barely). But I did come home from the hospital two weeks ago yesterday, so the headline is (almost) true. By the way, I’ve posted some pictures of my knee below. They’re not terribly graphic, but I wanted you to be forewarned.

I’ve got to admit that I’ve spent most of those two weeks in bed. A lot of it is just recovering. Part of it is because I spend four hours a day in a passive motion machine and another hour in physical therapy, so the rest of the day, I’m just plain old tuckered out.

The surgery went very well. There were some adventures in the hospital stay that I won’t go into now, but if I must have surgery again (which I’m not planning), I may have it somewhere else. This was my third surgery at the surgical center and while I like the center for many reasons, I do have some issues with the quality of their nursing care. We’ll see. Right now, I’m resigning from all future surgeries. I’ve had more than my fill.

There hasn’t been a lot of pain. During surgery, they put some long-lasting anesthetic directly in the knee. It lasts 3-4 days, enough that by the time it wears off, the initial surgical pain has subsided.

They got me up and walking on my new knee within hours of surgery. I was still hung over from anesthesia and I was not a happy camper but the only way to get them to go away was to get up and walk, so I did. But I did great after the anesthesia wore off. I was up walking around the hallways and counting the hours until I could go home. If they would have let me go home after the first night, I would have, but they do need to keep an eye on you.

Honestly the worst part of the entire surgical/hospital experience was trying to find a vein for either the IV (which ended up in my left hand) or to draw blood. One morning at three o’clock I had five nurses (and a vein finder) trying to draw blood. They stuck me four times before they could draw it. What a mess.

I think I’ve been pretty much on or ahead of the recovery track at home. My surgeon thought I’d be using a walker for the first two weeks before graduating to a cane. I was using a cane by the end of the first week and the last few days haven’t used any assistive devices around the house. I do take my cane when I go out (which has been very infrequent).

I had a major issue with swelling the first week after I got home. My knee was swollen to the point that I could barely bend my knee which made the exercise machine and the PT pretty futile. I went back to the doctor who prescribed a Medrol pack and antibiotics and it made an amazing difference.

My knee still doesn’t want to bend all the way which is an issue for a lot of activities. It’s difficult for me to sit very long at a table for dinner. My knee gets very stiff and then it doesn’t want to “unbend”. I’ve only tried going out for dinner one time to ease the cabin fever, although I think we’re going out again this evening. It’s more a break for my poor husband who has been chief cook and caretaker for the last couple of weeks. I’d like to go to a movie, but I’m not sure I can sit 2.5 hours in a theater. Plus the thought of someone stumbling over my feet as they go to their seats is fairly frightening.

There is a lot of numbness in the front of my knee. It almost feels like I have on a knee pad or something. I’m sure this will diminish as time goes on. (I hope.) And occasionally my knee “clicks”. And every so often it feels like it hyperextends which causes me a bit of balance loss. But overall, we’re getting acquainted and I have great faith that I’ll be feeling normal in a short period of time.

My goal is to be driving at least short distances next week. I have a couple of doctor’s appointments (follow-up on my knee as well as my previous back surgery). My husband is going to take me to the knee doctor, but I’m on my own for the back surgeon. Fortunately, I live fairly close to the medical center and I’m there so often that my car can almost drive itself there on auto-pilot.

Pain in general has been minimal, although it’s worse when I use the knee a lot (like for PT). I have long-acting and short-acting pain relievers. I’ve never been one to take much and finally yesterday, I made it through the day with just some Tylenol. Getting off narcotics is a big step in the healing process, so I feel I’ve made a major accomplishment.

I guess my main issue is still stamina. It takes about all the energy I have just to get up, get showered, and get dressed. That will improve, I’m sure. I just need to start spending more time out of the bed than in it. I’m going to be spending some time out of the house each day next week, so that will somewhat force the issue.

So I’ve got two more PT appointments (one today and one Monday). I have another week and a half of the dreaded TED hose and the continuous passive motion machine. After that we’ll see what the plan is. At some point I have to think about going back to work, but I’m certainly not ready yet.

The scar isn’t going to be bad. Below are a couple of pictures. One right after I came home from the hospital and one from yesterday after all the steri-strips came off. The knee(s) look especially gnarly because I have to wear TED hose and an Ace bandage on my operated knee, which leave marks on my skin.

So overall, I’m doing pretty well. Wish it were two weeks from now and I had more stamina and mobility, but I’m getting there. I appreciate all the healing thoughts and well wishes the last few weeks. Thanks for checking in.

Knees shortly after return from hospital

Knees shortly after return from hospital

Knees after two weeks without steri-strips.

Knee after two weeks and sans steri-strips.


She’s Alive!


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Yep, here I am, one week post-surgery and I’m pleased to report that not only was the surgery a success, the patient (me) survived to tell the tale.

This is going to be a short post because I still don’t have a lot of stamina (have just now started getting up to eat meals at the table rather than off my bedside table), but I wanted to check in and let you know that the surgery went well and my new knee and I are getting well acquainted.

I’ve run into a bit of an issue that my knee is still so swollen than I really can’t get it to bend, making it almost impossible to do physical therapy and use my continuous passive motion machine. It doesn’t appear to be infected, but not sure what else could be going on. It’s possible that the knee is flaring which would more than account for the swelling and stiffness.

I’m making a foray out today to see the surgeon and see if we can’t figure this out and get me back on the road to recovery. (I see a steroid injection in my future.)

But the surgery went well. Very little pain or other issues. Will post more gory details and associated pictures in the near future. Thanks for checking in.

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.


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