Unfortunately you can’t always blame your joint pain on RA. I am (un)lucky enough to be blessed with both RA and osteoarthritis (OA). Read more in my article on RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/oa/
I’ve decided that money is just like air: it’s not important unless you don’t have any.
I’m very fortunate in that I have a job that I like and it pays well. The benefits are good — they support my $1800/mo. Simponi habit. My husband owns his own architectural firm and while he’s not Frank Lloyd Wright, it has had consistent business over the years. We’re a long way from being rich (particularly based on Dallas standards), but our income supports our relatively modest lifestyle and allows us to indulge our passion for travel on a fairly regular basis.
I grew up [really] poor, and I’ve worked hard starting at a very young age to get to where I am today. The last 15 years or so I had my own consulting business, which takes an enormous amount of hard work and long hours if you don’t want to starve. I closed my consulting firm and ran for cover under the corporate umbrella about a year ago when I saw the economic handwriting on the wall.
What I would really like to do, what I’ve never had the opportunity to do, is to either stop working or cut way back — perhaps do some project work at home. I love keeping house and cooking. I’d like to be able to seriously work on my second novel — which has been gathering dust for over a year. I’d like to be able take exercise classes in the middle of the day — instead of missing them because I’m working late (again). I’d like to indulge those days when I don’t feel well without worrying if I have enough time off accrued.
And while our lifestyle would become even more modest, and travel become less frequent, we could manage on my husband’s income alone. The other night when I got home after a particularly grueling day, my husband even told me that if that’s what I really wanted to do, that he’s right there behind me all the way.
It sounds good until I look back just a few months ago when my husband had his triple-bypass surgery. What if he had not survived or had not been able to return to work? What if that had happened and I had already quit my job? It made me realize that as comfortable as our lifestyle is today, we, like many people, are one major health event from potential financial disaster.
We just applied (and were finally approved) for long-term health care insurance. This was right after my husband’s heart surgery. It seemed to take a while for things to move through and yesterday I spoke with our agent. It seems the hold up was not my husband’s health, but my RA. In fact, my RA disqualified me for one of the benefits we applied for (a waiver for the waiting period for home health care), and put me in a sub-prime group, which increased the premium on my policy. My policy has less benefits and costs more than my husband’s who has had open-heart surgery.
I tell people that I don’t necessarily believe the phrase, “If you have your health, you have everything,” but I’m a firm believer that if you don’t have your health, it impacts everything.
I’ve also decided that health, like money, is a lot like air. When you’re young, healthy, and invincible, you don’t pay attention to it because whatever you’re doing is working, right? But when you’re health becomes an issue, it’s like getting that after-Christmas credit card bill in the mail.
So take care of your health budget. Put some nutrition, exercise, and rest in the savings bank, and they’ll pay dividends well into the future.
Thanks for checking in.
There is an old saying that goes something like, “If the only tool you have is a hammer, then every problem is a nail.”
I have a good friend who, among her other amazing qualities, is extremely knowledgeable about hormones and has published a book that empowers women going through menopause toward self evaluation and self help (What About Menopause Don’t You Understand? http://hormoneguru.com/). In the past year that I have had both my hip and my shoulder replaced, she lost her husband to colon cancer and became a breast cancer survivor, so she has had more than a crash course. It is not uncommon that our conversations drift into medical discussions. When I comment on a new symptom or ache, she offers insight into which conditions might be causing it and which hormones or natural supplements might ease the situation.
While I certainly respect her knowledge, and I love her for caring about me, I know that not all things are hormone related, just like I know that not every one of my aches and pains is related to RA.
Or are they?
That’s one of the toughest things about this condition for me to deal with. It would be easy to define myself via RA, to scrutinize each new creaking joint and ache through the lens of the disease. However, I suspect the stiff, aching neck and shoulders has more to do with working 14-hour days on a computer than a sudden progression of RA. On the other hand, I also don’t doubt that working long hours, hunched over a keyboard aggravates already inflamed tissues, perhaps giving the disease an edge it wouldn’t have if I had a different life.
I recently read another blog where the author took umbrage about people flippantly saying their aches and pains were arthritis when those of us who truly have the disease understand the difference. On the other hand, how many of us had years of unresolved aches and pains before the disease manifested itself enough to be diagnosed? Who is to say that those minor aches and pains suffered by others aren’t the harbinger of something more insidious?
But back to the point. Having a diagnosis puts a different perspective on your life. Whether you want to or not, you evaluate any change in your joints as a person with RA, which is much different from a person without it. I have to decide whether the pain in my feet today is the onset of a flare, a result of the changing weather, or perhaps wearing a different pair of shoes yesterday. People who don’t have RA don’t think about those things. They have tools other than hammers and look at life through different-colored lenses.
I am now counting the days until my next Simponi injection. It seems like the last week has just been miserable. Every morning I wake up and count the things that don’t hurt- it’s easier than counting the things that don’t feel like they want to move, ever again. I got such immediate, wonderful relief with the first injection of Simponi, I’m hoping for the same reaction this time, but maybe it will last longer than a week. I’ve considered going back to see my rheumatologist, but I don’t want to go back on steroids (yet) and until we figure out if Simponi is going to work for me, I’m not sure she has much else to offer.
But my symptoms seem to be accelerating. I’ve been walking in the evening and last night my knee was so swollen that you couldn’t even see it. I’ve also been developing pain and new nodules in my hands. All of this is disturbing. I’m taking Tylenol at an alarming rate, but it’s all that gets me through the day. Previously I had been taking two Celebrex, but my new doctor cut me back to one. I’m considering going back to two a day and seeing if that morning dose helps.
The physical therapy seems to be helping loosen up my shoulder. We stretched it out really well on Monday to the point that I’ve been really sore all week. I go back Thursday and hopefully I’ll be up for another good session. I have hope now that I’ll get a good range of motion back and lose some or all of the painful tightness. So there is good news in my life, after all.
My husband is recovering nicely from his triple-bypass. He’s been diligently going to rehab 2-3 times a week, eating well, ignoring red meat, and enjoying the benefits of red wine. All is well on that angle.
I take my next Simponi shot on or around the 12th of September and see my rheumatologist soon after that. I’ll check in after those events unless something deserves mentioning before then.
Thanks for checking in.
First of all, for those of you who are aware of my marital history, no, I’m not getting a new husband.
Second, about the shoulder. Went to the shoulder doc today. Everything is as it should be. They’ve added some strength building exercises to the ones I’m already [supposed] to be doing. I go back in 2.5 months (late August). As long as I continue to progress with my home exercises, they’re not going to send me to “real” physical therapy, which is a good thing. The last thing I need in my schedule is another doctor’s visit. I do need to start being better about actually doing my exercises, though.
Next about the husband. Jack has had some issues being out of breath when walking briskly or otherwise exerting. A nuclear scan showed some potential narrowing or blockage of one of his coronary arteries. We go in Wednesday for an angiogram with the possibility of having a balloon procedure or a stent inserted. (Well, actually, Jack goes in. I’m just the chauffer.) If all they do is look, Jack will be home Wednesday afternoon. If they actually do something, he’ll have to stay overnight at the hospital and come home Thursday. Probably be back to work on Friday or Saturday. Right now no one is getting too excited about this. It doesn’t sound life-threatening or even appear to be significant enough for the doctor to rush him in for the angiogram. However it is something that we need to check into and I give Jack a lot of credit for stepping up and getting it seen about. I’ll post more Wednesday night after the procedure to keep everyone informed.
Now about the car. (Picture below) The car (we’ll call him George to protect the innocent), has blended in quite well with the family. He’s almost the same size as the white CTS Cadillac that he shares his room (the garage) with. Jack thinks he’s wonderful and is now considering getting a twin — or at least a cousin — when his lease on the CTS runs out later this year. I think it’s a wonderful car. It’s plush and powerful and safe. But I can’t help but miss my Smart Car. It was cute and fun to drive and it made me smile every day. Now I’m just another Lexus-driving, middle-aged, Dallas workaholic. Everyone should have my problems. Thanks for checking in. I’ll update on Jack’s condition after the procedure on Wednesday.
Much like my hip surgery, I tend to gauge my recovery by how well I can do things by myself. Now that I’ve started back to work, I’m driving and wearing “big girl” clothes, so I have a whole new list of things I’m [supposed] to be doing by myself.
Getting dressed [and undressed] has still got to be my biggest issue. I occasionally “get stuck” pulling a top on or off. Other types of clothes that need to be pulled on or adjusted with both hands are a problem since I don’t have any “pulling power” in my left arm yet.
Blow drying my hair is a daily adventure. My ultra-short haircut has now grown out to a little over an inch on top. On the weekends I can just towel-dry and go. However, during the week I actually have to dry it because if I don’t it’s still wet when I get to the office. I had this really neat hair dryer stand that was basically a long goose-neck stand with a clamp on the end that held the hair dryer. That worked great for exactly three days until my cleaning lady picked it up by the hairdryer and broke off the clamp. The process is three parts. The first is me waving the hairdryer around with my right hand, stopping and styling the hair, repeating as necessary. The second is me propping my left arm up on the sink and holding the hair dryer while waving my head wildly around trying to style with my right hand. The third is my husband doing his G.I. Joe imitation with his Kung Fu grip holding the hairdryer, which allows me to style with my right hand. None of this works very successfully, but as short as my hair is, it’s styled straight back, so there’s not a lot of damage that can be done. In another couple of weeks, though, my hair will be long enough that I’m going to have to do something with it.
Driving is the other exciting part of my day. Driving in Dallas is an adventure in living even if you have both arms available. Driving with 1.5 hands is really exciting. I’m to the point that I can hold the steering wheel with the left hand, although I do all the hard steering (turns, etc.) with my right arm. I also have to use my right hand to use the turn signal. Normally I’m driving alone, but this weekend I was test driving new cars and I think the car dealer thought I was a bit weird the way I was driving. Can’t say that I blame him.
So, I’m getting there. It’s a slow progress and I occasionally forget that I can’t do things — like open doors with my left arm and I am quickly reminded. I cooked dinner last week and getting things in and out of the oven was pretty scary. I also cracked open an acorn squash one handed with a large chef’s knife and it’s a wonder I didn’t chop more than the gourd.
Tomorrow I see Dr. Tucker (the ortho guy who did my hip) and my rheumatologist. My hip has been bothering me since my fall and my knee is making me miserable, so we’ll see what he says. This is my check up with my rheumatologist. The Humira hasn’t kicked in completely since the surgery and I am still having some problems, but not as much as when I was off because of surgery.
I’ll check in tomorrow after I see those guys.
Today I got my staples out — all 14 of them. For the not squeamish among you, I have uploaded a picture of the incision along with a picture of the bruises that are still on the back of my hand from trying to start the IV. Click on the shoulder surgery pics page link.
Had a good weekend. Got out of the house for the first time since surgery. Went to the store Saturday and Sunday went to dinner for our wedding anniversary.
My home health nurse is going to check to see if I can restart my Humira and Celebrex. My rheumatologist said 2 weeks after surgery if I was healing like I should, and the nurse said everything looked great. I’ll be glad to be back on the medication. I think I’ll feel better over all.
I think that’s about all I know for now. I’m just getting really tired of being house bound. Thanks for checking in.
It’s hard to believe it’s already been 10 days since surgery. Being off work and on drugs seems to make the days run together.
I’ve decided to basically give up the pain/muscle relaxer meds. I was taking them as a matter of course to “stay ahead of the pain, not chase it”, and realized that I probably didn’t need all the narcotics and associated side effects. Actually I planned to do this yesterday, but I have an area in the biceps region that tends to get really sore as the day wears on and when I woke up yesterday, that pain was already there. So I first took a muscle relaxer, thinking the muscle was just tight. When that didn’t work, I broke down and took an oxycontin (just one), which is a long-lasting drug, with the thought I might not need anything else for the rest of the day, which I didn’t. However, before I went to sleep, I took a percocet which tends to put me to sleep. Even so, one muscle relaxer and two pain pills is a far cry from the around-the-clock meds I was taking. This morning I haven’t needed/taken anything, but if/when I do, I may just start with some Tylenol and go from there. I haven’t even opened the hydrocodone bottle. It’s sitting on the shelf with the left over two bottles from previous adventures.
I think I’ve got a lot of mobility for where I should be. Right now all my exercises are passive, meaning I move my surgical arm with my other arm. I’m not supposed to be using my surgical arm for basically anything. The one thing I can’t do yet, and which was one of the things I had issues with before surgery, is raising my arm/elbow directly in front. One of my exercises is to use a pully to raise the arm. My elbow is supposed to be level with my shoulder and I can only get it about 1/3 to 1/2 the way there. I actually do use my arm some when I’m getting ready in the morning when I’m out of the sling — not a lot, but some.
My IV bruises have about faded. I still have one dark purple, quarter-sized one on the inside of my fore arm and 3 other light green areas you can see on the forearm. The back of the hand is still a light grey/purple/green. The needle holes have healed down to basically little light scabs that a good salt/sugar scrub at a spa would cure.
I get my stitches out Monday, which will be nice. The incision is about 6″ long with a little curl on each end, giving it a weird sort of S shape. Kind of like “Sorro” (instead of “Zorro”) came by with his sword and initialed me. I’m going to ask the nurse if I can get clearance to start back on my Humira and my Celebrex. My rheumatologist said two weeks if they were happy with the way I was healing, so hopefully the answer will be yes.
I am excited about this weekend. I get my first outings. Saturday I get my nails done and Sunday is our wedding anniverary so we’ll go to dinner Sunday evening. It’ll be a bit embarrassing being at a 4-star restaurant and having Jack cut my food up for me, but I don’t care. And my hair has finally grown out to about 1/2″ so it looks stylishly chic (or that’s what I tell myself, anyway).
Then on the 30th I go back to see Dr. Burkhead. I hope/believe at that time I will start real physical therapy and will begin getting my strength and range of motion back in my arm. I’m ready. This sitting around getting well is nothing if not boring, especially since I’ve quit taking drugs.
That’s all I know for now. Thanks to all who care enough to check in and are sending warm, healing thoughts my way.
Shoulder replacement surgery is less than a week away and I’ve got several of the pre-op check marks ticked off my list. For one thing I’ve spoken with the anesthesiologist’s office and was extremely pleased to find that my co-pay for them is a whopping $198. When I’ve paid literally thousands for out-of-network, out-of-pocket anesthesiologist fees before, this is amazing. I’m hopeful the rest of the procedure (both physical and financial) will be equally easy.
I’ve also asked that my previous physical therapist be assigned to me once I get home. I was supposed to go to some type of rehab class, but I got the instruction letter too late to attend the class. On Thursday I go through the pre-registration phone call with the surgical center admitting office.
As I was telling my husband and my brother (and my friends and anyone else who will listen) I can’t seen to get my head around needing this surgery. Unlike my hip which hurt with every step I took, I’ve learned to not use my shoulder in certain ways, so it doesn’t hurt day in and day out like my hip did, so it’s not driving me to seek this kind of drastic relief. However, there’s no arguing with the test results and delaying it will only make it harder to repair. I know all of these things intellectually, but I still can’t emotionally embrace the fact that I’m facing another joint replacement surgery.
I’ve been off my arthritis medicine (Humira) for about five weeks now and I stopped taking my anti-inflammatory (Celebrex) on Sunday, so I feel like … well, I feel like I’ve got a case of the flu because I ache all over. My rheumatologist prescribed some pain pills, which I took on Sunday. However, they make me really goofy, so I’ve decided that I’m going to try to tough it out with Tylenol. Although as uncomfortable as I am already, in another couple of days I may be chugging those new pills — goofy or not.
I’ve got a busy week before surgery, and a busy weekend with getting ready for surgery and the Texas Motor Speedway NASCAR race on Sunday. I guess that’s good. I won’t be sitting around fretting about it.
Actually, the only thing I really dread — and anyone who knows me will tell you this — the only thing I really, really dread is starting the IV. As I said in an earlier post, they only have one arm (my “bad” one) to try to stick, and I’m very concerned. Once they get that started, it’s all downhill. They pour in the drugs and off to wonderland I go. When I wake up, all I have to do is get well.
That’s it. I’ll probably check in once more before surgery. I’m actually hopeful that I will only have to spend one night at the surgical center, so I may not update the blog while I’m in the hospital. I’ll take my phone with me though, so I can take pictures if there’s anything worth doing that.
Thanks for your good wishes and for checking in.
arthritis, Banerjee, Carla Kienast, dr. burkhead, Humira, Osteoarthritis, replacement surgery, rheumatoid arthritis, shoulder impingement, Shoulder Surgery, Undifferentiated Spondylarthropathy, wayne burkhead, Williarm Tucker, Wm. Tucker
Well yesterday I saw my internist for my pre-op physical and general annual check up. No surprises there unless something comes back in the blood work.
This morning I went in for a follow-up visit with my rheumatologist. She was appalled that I’ve been off the Humira as long as I have. Ideally she wants her patients to be off for four (4) weeks before surgery then start again two (2) weeks after surgery if everything is healing and progressing like it should.
She was also concerned that Dr. Cheatum prescribed two Celebrex a day. She said I should be stopping the Celebrex any day now prior to the surgery and when I start back up again after surgery, she wants me to only take one. In the meantime she has prescribed some pain medication for me to take when I get of the Celebrex that won’t interfere with any of the surgery stuff. I don’t know that I’ll take it. I’ll probably stick with Tylenol. I have too much to get done to be dopey headed. But if I have problems sleeping or whatever, it’ll be nice to have them.
I think I mentioned in an earlier post that my knees have been bothering me. When she examined me today, it was apparent that my right knee was swollen. She wanted to draw off some of the fluid then inject the knee. NOT! I guess it would have made my knee feel better over all, but I don’t have the time to deal with it if it hurts due to the procedure. She offered to let me come in at any time before surgery and get my joint(s) injected and/or put me on a low dose of prednisone, although she’s not real keen on the prednisone because it can interfere with healing. She’s afraid that I’ll have a flare being off the Humira and I don’t doubt that she’s right.
I still haven’t gotten my head around this surgery. I know without a doubt that this is the right answer, but knowing and feeling it are two different things. They had to stick both arms yesterday just to do a simple blood draw for my physical. That just brings home how difficult it is to get an IV started in me and all those fears about the surgery came flooding back.
I called the surgeon’s office today because I haven’t gotten the disability paper work back so I can get paid while I’m off. They’re going to get it to me later today (probably). I still haven’t gotten my packet of information about the surgery and check-in procedures, so hopefully that will show up soon.
Tomorrow I go to Houston all day on business, so I’ll get to beep through two new airports — Dallas Love and Houston Hobby. I can’t imagine how many bells I’ll set off when I have both the shoulder and the hip.
I expect things to be pretty quiet between now and surgery, but if anything new pops up, I’ll update the blog.
Thanks for checking in.