The way we were

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Carla Kienast, hip surgery, rheumatoid arthritis, Shoulder Surgery

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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Thanksgiving and other updates

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Carla Kienast, knee surgery, rheumatoid arthritis, Shoulder Surgery

First the good news.

My husband and I went to New Orleans for Thanksgiving and had a wonderful time. Ate far too much incredible food, but as much as we walked and explored, I kept all but one pound of it off. We hadn’t been for many years — since before Katrina — and we were well overdue for a visit.

As indicated by my previous post, the other news concerns my job. Or actually, as the case is currently, my lack thereof. For the first time in my life I’ve been laid off. It’s not totally unexpected, but it’s still a bit of a shock to the system (and to the pocketbook). So for at least the time being, I’m back to consulting, which I did for about 15 years before joining my last company as a full-time employee. (See my new website here.) I’m in the midst of getting my new office set up and everything working again. My husband’s firm had an empty space in their offices which has turned into quite comfortable quarters for me.

This has been a heck of year (and it’s not over yet). I lost my stepmother in January. I had knee surgery in March. I lost a good friend and co-worker in June (and took on her job duties and department temporarily). I had extensive shoulder surgery in October and lost my job in November. Good thing the world is going to end in December — I’m not sure I could take much more of this.

The good news throughout all this is that RA has remained relatively quiet through all the rest of the chaos in my life. Perhaps Orencia is working or perhaps my body is so busy fighting the other effects of stress on my body that it doesn’t have time to give me grief with RA. Whatever the reason, I’m grateful.

So that’s my news for the day. I hope yours is much better. Thanks for checking in.

I don’t even know where to start …

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Carla Kienast, rheumatoid arthritis, rotator cuff surgery, Shoulder Surgery

I have been meaning to post for days, but lately my life has seemed like a time-lapse video. You know that video that shows a seed being planted, then it germinates and sprouts and grows into a beautiful flower. Then it’s eaten by a cow and winds up as a withered cow patty decomposing in the pasture. That’s me.

In the essense of brevity and to keep me from whining too much, here’s the Cliff Notes version of recent events:

• Shoulder surgery. The steroid shot did its work and since then I’ve made amazing progress. I can actually believe that I will make a full or nearly full recovery. Still have a lot of physical therapy in front of me and I’m still not supposed to lift more than one pound, but I am leaps and bounds beyond where I was the last time I posted. And the really good news is that I won’t have to convert to being left-handed for the rest of my life. (Apologies to my brother and the other lefties in the world, but it ain’t easy being left-handed in a right-handed world, and I’d like to avoid that if possible.)
• House repairs. Things have been on hold while I’ve been home recoverying. When I say “on hold” I mean nothing physically has been done. However, the last few weeks I’ve felt well enough that I’ve met with flooring people and kitchen people and installation people and mold people and insurance people out the kazoo. We basically are close to being ready to get all this stuff done. The mold remediation will be done the week after Thanksgiving, then the big replacement of the floors, kitchen, and paint will begin in January. (What a way to start the year.)
• Other news. In other news my career took an 180 degree turn as of yesterday. I’ll provide details in a later post (it’s a bit early to discuss at this point), but the change will definitely have a real impact on my life.

So that’s all the news that’s fit to print in my (Carla’s) corner of the world. Thanks for checking in, and Happy Thanksgiving next week. May you and yours enjoy all the blessings of the season.

Steroids to the Rescue!

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Carla Kienast, rheumatoid arthritis, rotator cuff surgery, Shoulder Surgery, steroids

Like many people with inflammatory issues, I have a love-hate relationship with steroids. You can’t help but love them because generally they make you feel better and fill you with energy. What’s not to like? Besides the side effects, that is. You know: weight gain, thinning skin and bones, among a long list of others.

After two weeks of recovering from surgery, I was still very sore and could tell there was inflammation and swelling in the shoulder. In addition, I had been off my RA drugs for a month and was starting to feel the effects. So last week I did a prednisone taper.

Of course, tapers come to an end and, as good as I felt at the beginning of the week, by the end of the week, things weren’t much better than when I started.

That being said, I’m back on my medications and they are starting to help overall. However, the shoulder continues to be sore and inflamed, so tomorrow I’m going to swing by the surgeon’s and they’re going to do a steroid injection to help calm things down and keep me on track.

I don’t have an addictive tendency, but feeling as good as I do on prednisone, I can understand how people would want to maintain that level of vibrancy — whether from steroids or other less-legal drugs. I’ve contemplated discussing with my rheumatologist adding a low dose of prednisone to my current cocktail. And as alluring as that is, every time I peek behind the curtain of the dark side of those side effect, I opt for staying on this side of the line with the occasional “emergency” foray to be “rescued.”

I continue to mend and I am hopeful that if I can get the pain and swelling in my shoulder calmed down that I’ll soon be able to return to work and other (ab)normal activities. This recovery has been longer and more difficult than I could have imagined. Thanks to everyone who has sent well wishes and hugs. They have made all the difference in my life these last few weeks.

Hope that you have a great Halloween. Thanks for checking in.

Pigeonholed?

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Carla Kienast, rheumatoid arthritis, rotator cuff surgery, Shoulder Surgery

I think I’m finally calm enough to write this post. I’ve been seething since my appointment with my shoulder surgeon to schedule my surgery.

I had been dealing with increasing pain and limitations in range of motion for approximately a year. Repeated imaging (X-rays and MRIs) did not show excessive amounts of arthritis damage but were also inconclusive about other causes. For lack of other options, steroid injections were prescribed (which didn’t work). If those didn’t provide improvement, then the only other option would be to replace the shoulder.

My surgeon is one of the best in his field and it’s common for him to conduct his patient visits with one or more fellows that are studying with him. (These are physicians who are furthering their specialties.) When I went in for my post-MRI, pre-surgery visit, one of these fellows came in to chat with me before the surgeon came in.

The first words out of his mouth were, “I see you have RA.”

I guess the good news is that he paid attention.

He went on to suggest that I might want to just treat my shoulder medically, i.e., via RA drugs, rather than surgically.

I don’t normally speak to medical professionals like I did that doctor. I explained that I was treating my RA medically under the guidance of one of the best rheumatologists in the region using a cocktail of sophisticated and advanced drugs combined with exercise and diet. This was not RA. I know what it feels like when it’s an RA flare, and this was not it.

Then the surgeon came in and I went through that explanation a second time. He finally agreed that we would go in with the scope to determine if there were something not showing up on the imaging studies and to see if there were some corrective/cleanup actions that could improve the situation.

If you have been following my blog, you know they found a severe rotator cuff tear which had been apparently getting worse over time. What really infuriates me is that last friggin’ October I told them I thought I had re-torn my rotator cuff and I had been living with the situation for a full year trying to convince them that something was wrong.

On one hand, I’m glad I have a conservative surgeon who doesn’t just jump into unnecessary surgery to collect insurance fees. On the other hand, I feel like that if I didn’t have RA, my complaints would have been taken more seriously earlier on and I would have been saved months of pain, sleepless nights, and limited motion.

Okay. So now I’m mad all over again.

I guess the point of this post is that so many of us search, sometimes for years, for a diagnosis which means that we can find a treatment plan and perhaps even remission. However, it apparently can put us in a pigeonhole in the eyes of some healthcare providers: “It hurts, so it must be her RA. There’s nothing else to be done.” The truth is, we are people and prone to the same injuries and illnesses as anyone else — perhaps even more so due to our disease and the associated treatment.

We as patients must make it incumbent upon our healthcare providers to see us as whole patients. It takes work and perseverance, but you are the patient and are therefore the only one who knows how you feel. In order to get the appropriate treatment, you must be able to make your healthcare provider understand that.

Thanks for letting me rant, and thanks for checking in.

Didn’t see that one coming …

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Carla Kienast, dr. burkhead, rheumatoid arthritis, rotator cuff surgery, Shoulder Surgery

So Tuesday I went back for my two-week post-op follow-up and to get my stitches out. Everything looks fine, which is the good news.

When I had rotator cuff surgery previously (which was arthroscopic rather than open), I was back to work after three weeks. I was actually working from home part-time after the first week. Other people I know have returned to work after the three weeks you’re required to be in the sling.

So, assuming a three-week recovery, I would be returning to work next Monday. However, this has been a tough surgery and a rough recovery, so I was prepared to negotiate for one more week to regain strength and range of motion before trying to go back to work.

My doctor wants me to stay out at least four more weeks after this one, returning to work Thanksgiving week, for a total of seven weeks.

As God is my witness, I’m not sure I can watch that much daytime television.

Two days later, I’m still trying to digest that news. Now that I’m generally feeling well (and back on my RA meds), I’m getting the bored and restless syndrome. Of course I’m still handicapped by not being able to use my right arm, and I can’t drive yet — which just fuels the B&R syndrome.

My company has a policy to shut off access to emails, servers, etc. to people who are on FMLA leave (which I am), so I can’t even work part-time from home. I am supposed to be focusing on my recovery. Well I am, but you can’t do that all friggin’ day (especially since I’m no longer taking anything but Tylenol …).

The other thing this has impacted is moving forward on repairs on the house after the damage from the water leak. But we’ll deal with those issues as we can.

So, that’s the latest from the home front. If you have any great ideas for things to do that don’t involve the right hand, please send them my way. Thanks for checking in.

7 Days Later

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Carla Kienast, dr. burkhead, Glad Press and Seal Wrap, Press and Seal, rheumatoid arthritis, Shoulder Surgery

There are a couple of British horror movies that explore the conditions in England 28 days and 28 weeks (respectively) after a “rage virus” infects the population with the end result of turning everyone into zombies. Appropriately enough, the first movie directed by Danny Boyle (Slumdog Millionaire, the 2012 Summer Olympics) was named “28 Days Later”, and the second movie starring noted British actor Robert Carlyle, was named “28 Weeks Later.”

I feel like I’ve been living my own zombie movie for the past week since surgery (thus the title of the post …).

I’ve had a lot of surgery, but I have to say this one has been very rough. The last week has been a blur of sweat-soaked nights and pain-wracked days interspersed with frequent visits with my new best friends, Percocet, Hydrocodone, and Oxycontin. I had my first glimmer of normalcy for a few hours on Saturday when a friend came over to rattle my cage and share pizza. Then yesterday, I started feeling a bit human and finally today, a week later, I feel like I’ve finally awakened from a week-long nightmare.

But I’m getting ahead of myself. You know, like the murder mysteries that open with the main character awakening face down, covered in blood, wearing a ski mask, and surrounded by the pink plastic flamingos in the next-door neighbor’s yard.

When I last wrote, I didn’t know what procedure(s) would actually be done. The options ranged from a simple orthoscopic cleanup (or “debridement”) up to a full shoulder replacement.

They started with the debridement which generally cleans up the joint and, in the process, found a “massive” rotator cuff tear (which apparently didn’t show up on the imaging studies). Apparently my rotator cuff was being held together “by a thread”. So they did that repair. Unfortunately, it wasn’t done with the scope, I have a 3-4″ scar over the crown of my right shoulder, which I’m sure accounts for a great deal of the pain I’ve been having.

My previous rotator cuff surgery (two years ago on the same shoulder) was a breeze. I was the poster child of all possible outcomes being the best possible. Of course, looking back over my posts, I note that my surgeon told me that it would be more painful than shoulder replacement — which it wasn’t then but it is now.

One of the worst parts is having to sleep propped up with my shoulder in a sling. Of course, I’m off my RA meds, and since I’m basically in the same position all night, I wake up so stiff, I’m crinkly.  I feel like ice has formed in my joints overnight and I have to “crunch” through it just to move in the morning.

But, a week later, I am doing much better.

A couple of other things re the surgery worth noting. First, the doctor said that I will likely need to have the shoulder replaced in 2-3 years, but that it wasn’t degraded enough at this point that he could justify it doing it now (as opposed to putting me through another major surgery in the future …). The second was that I agreed to not only general anesthesia, but a regional block which worked really well when I had shoulder replacement surgery. Unfortunately, the anesthesiologist (literally) missed the mark and I wound up with the entire right side of my head numb, but nothing in my shoulder. I could do an entire rant post about that, but it wouldn’t solve anything.

I’m doing passive exercises at home 2-3 times a day and start real physical therapy later this week. I need it. My arm is so stiff, I can’t raise my hand above my shoulder. The goal was to improve things and obviously we aren’t there yet.

So thanks to the wonderful nursing skills of my husband who pretty much stayed home with me all week, I’m starting to regain my humanity (although I still sort of look like a zombie with stringy hair, a stiff gait, and bags under my eyes).

Oh, and a final tip of the day (and I can’t believe I’m just now learning about this), if you need to keep some of your pieces and parts dry in the shower, get some Glad Press and Seal wrap. It seals to the skin. A double layer will pretty much guarantee that bandages and stitches and skin will all stay dry while the rest of you can get soaped up. (And for people like me who are allergic to tapes and adhesives, a non-tape option is a God-send.)

I probably have lots more to write, but I’ve used up all of my energy and creative juices. It’s nice to be upright and conscious for a change. Thanks to everyone who sent warm thoughts and well wishes and, as always, thanks for checking in.

Surgery Monday and other updates

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Carla Kienast, dr. burkhead, ES hybrid, ES300h, lexus hybrid, replacement surgery, Shoulder Surgery

For the last 10 days I thought I’d find a couple of minutes to update the blog, but it seems like there has been so much happening I haven’t been able to slow down long enough.

On the health front, shoulder surgery is three days away. I was originally scheduled to be at the surgical center at 9:30 Monday morning. The scheduling nurse called me yesterday and asked that I show up at 6:30 am for an 8:30 am surgery start. While I hate getting up that early, I’m glad they moved the start time earlier. There are few things worse than sitting around waiting for your turn for surgery. You’re nervous. And you can’t eat or drink anything — and for someone with Sjogren’s who gets terribly dry and thirsty anyway — not being able to have a drink of water can be pure torture. So better to start early.

I’m still not taking bets on where we’ll wind up on the range of possibilities — from a simple arthroscopic clean-up to a full-blown replacement. I know the insurance and medical-leave machinery is all geared up for me to have the replacement surgery and be out of the office until after Thanksgiving. Better to plan for the worst scenario than to have to scramble and re-approve everything. I guess I’ll find out Monday morning when I wake up in recovery. One way or the other, I have a high degree of confidence that the eventual outcome will be less pain and stiffness and more range of motion than what I experience now.

And I got a new assistive device. It’s a hybrid.  A 2013 Lexus ES300 hybrid to be exact. It’s a good thing I’m going to be off work for a while so I’ll have time to read the owner’s manual. It has more bells and whistles than my iPhone. And it really is an assistive device. I really liked my previous car, the Lexus IS250, but my RA has gotten bad enough that it was physically painful to get in and out of the car. It also had a sports suspension — which is fairly stiff — so going over bumps in the road actually hurt my joints. In addition to the fully adjustable seats, the new car has the automatically retractable steering wheel, plus being slightly larger overall, so I don’t have to “squeeze” in and out of the car. It’s also got a longer wheelbase and the comfort suspension, so the ride is much more comfortable. I’ve had it on order for more than a month and it finally arrived last night, just days before shoulder surgery (and you can’t drive for a while after shoulder surgery …). I know, with all this other stuff going on in my life I didn’t even mention getting a new car — when my intention all along was to do an expanded post on assistive devices similar to one I did a couple of years ago here.

In other news, the crawl space under my house is finally dry. The guys came and took out the nine blowers and the dehumidifier yesterday. I have my dryer back in place (they had to plug all that equipment into the 220v dryer outlet — now I can do laundry again). However, we can’t get the mold treated until after I recover sufficiently from surgery because it’s not really a health risk for healthy people, but could be a problem for someone recovering from surgery — particularly with an open surgical wound. So it might be a week or three weeks or eight weeks. No way to tell at this point. That’s another thing I’ll find out Monday.

The flooring people came out and did measurements and we sent them samples of the existing flooring so they could determine the quality of the materials for replacement value. They sent their estimates and findings to the insurance company, so I guess we need to get the estimates from them. We’ll just need to see what that particular flooring company has to offer. My inclination is to go with the insurance company’s provider so if we run into any problems during installation, they can deal with the insurance company directly. However, if they don’t have anything we like, we may just take the check and find another supplier.

But before we do that, we have to get the mold treated. Then we have to pack up everything in the house and put it in storage and move to a hotel while another contractor demolishes all the floors and subfloors (except the tile floor in the master bath). Hopefully we don’t find any more issues once the flooring is ripped out and we can move forward with replacing the floors and moving back in. We’ll also have to replace all the baseboards because those will get damaged in the demolition process and the paint (except for the ceilings) will probably have to be redone as well.

Oh, and the air conditioner people called. They’ve decided our warranty on the dead compressor covered parts, but not labor. So now we have to go back to our 2007 records when we bought the unit and find the original contract to prove them wrong. Otherwise, it’s another $$$.

And work has just been nuts. I’ve had a couple of critical communications projects recently (and not the good kind, either). So all that has been pretty stressful.

But I can only work on this stuff one step at a time, so I’ve tried not to worry about the mountain of stuff, just tackling whatever’s next on the list. One of the good things is that my husband and I sat down the other night and worked our way through the list, discussed our options, and basically got on the same page with how we’re going to approach everything, how long we think everything is going to take, and what contingencies we may need to think about. It’s good we talked now because it’s going to be a long haul and we certainly don’t want to be arguing our way through it one step at a time.

Another good thing in all this is that I’ve somehow managed to avoid any major flares. My joints are telling me that I’ve been off the meds for two weeks and also that we’re supposed to get a few days of rain this weekend, but not the “run hide under the covers with the pain pills” flare. (Hope those aren’t famous last words.)

I doubt that I’m going to get the chance to post again before surgery — too much stuff to get done to get ready — so please send healing thoughts my way next week.

Thanks for checking in.

A matter of perspective …

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Carla Kienast, home repairs, rheumatoid arthritis, Shoulder Surgery, water damage

Yesterday was my regular visit with my rheumatologist. I really like her because I usually feel better physically and/or mentally after my appointment. However, I discovered that we have a bit of difference in our perspective.

I’ve been having a chronic bout of bursitis in my left hip. It’ll get better, then it’ll get worse, but it never quite goes away. Hearing about it, my doctor immediately offered to inject it. As she was doing the procedure, she said, “This of course, is just the jumpstart. You need to support it with stretches, mild exercise, and ice.” To which I replied, “No, this is the finish line. I’m already doing the stretches, exercises, and ice and that hasn’t resolved the issue. I’m hoping the injection is the extra bit that’s needed to get me over this.”

I’m not saying that my doctor — or any doctor — assumes that their patients come to them as a first line of defense. However, I do think that there are people who do go to the doctor first rather than using some common sense remedies first (like using OTC medications for a cold, or rest and elevation for a twisted ankle). As proactive patients, I think we need to make sure that our doctors know what measures we’ve taken before we’ve seen them.

I used to get these weird rashes for which I’d first start with a topical OTC cortisone cream then, if that didn’t work, try a stronger prescription-strength cream for a couple of days. If that didn’t work, I’d go see my dermatologist. By telling him that I’d already used everything I had in my arsenal, he knew it was time to go to DefCon 3 and try something above and beyond what had already been done. Had I not done this, he might have prescribed a treatment plan I’d already tried.

I guess the point is, for the best and most effective treatment options, we have to make sure that we and our doctors are looking at the issue from the same perspective.

In other news, I’m making progress on the home front issues. The cable got fixed last weekend. The air conditioner, which was to have been fixed on Monday didn’t get fixed until Tuesday because some guy in the warehouse didn’t get the new compressor on the truck on Friday. Seems like we’ve had three or four people come in and do assessments on the water damage situation. Today they show up with blowers to put under the house to finish drying the space. This will last 5-7 days and will be followed by people who will hand clean any mold, do the microbial treatment and seal everything. In the meantime, my husband and I keep finding new places where the floor is buckled. The insurance adjuster comes by tomorrow morning and once he does his assessment, we’ll have a much clearer understanding of what we’re dealing with, how much work needs to be done, and how much the insurance company will cover.

And in two weeks, after my shoulder surgery, we’ll have a better idea of when we’ll actually start the repair process. Once we get everything dried out and the mold treated, then there is no rush to get the floors fixed. We’ll just have to live with roller-coaster floors until we get around to it. Between my surgery and recovery and my husband’s travel schedule, we may very well be looking at the end of the year or the first of next year (which isn’t that far away when you think about it, unless the world actually ends in December according to the Mayan calendar, and then it doesn’t matter …)

That’s all that ‘s going on in my world today. Thanks for checking in.

Mushrooms under the floorboards and other updates …

Tags

Carla Kienast, home repair, rheumatoid arthritis, Shoulder Surgery, water damage

Let me update you on progress from my last couple of posts and a couple of other items.

First the remediation/restoration guys came out Friday to do an assessment. Based on what we’d told them, they were expecting 50% humidity under the house and 15% water penetration in wood. It was 80% humidity and 18% penetration — much worse than we expected. They took measurements and pictures. I have pictures of mushrooms growing on my subfloor (not the dirt — the actual wood!). We also have pictures of mold growing. It’s not the black dangerous mold, but it still has to be hand treated, sprayed with a microbial and then sealed. Once it’s sealed, they’ll put blowers under the house to make sure everything is dry. I think this is going to start happening this week.

Since our air conditioner compressor died, my husband and I spent last Thursday, Friday, and Saturday in a hotel room. However, the temperatures in Dallas dropped over the weekend from highs in the 100’s to highs in the 80’s with overnight lows in the 60’s so we decided to stay at home yesterday. It was good to be in my own bed, surrounded by my own “stuff” again.

The cable got fixed yesterday. (I know, I didn’t mention this earlier. In the grand scheme of things, non-working cable seemed like a moot point.)

The new air conditioner compressor will be installed today. Hopefully that will solve that problem.

The insurance adjuster is going to come out on Friday to do an assessment of the damage. We’ll know more about the total impact of this “event” once we meet with him. Based on where we’ve found floors that have buckled (or in the case of the kitchen, where the ceramic tile is cracked), I’m estimating that 1/2 to 2/3 of our floors and subfloors will need to be replaced. As we’re going to move both us and our furniture out of the house while this is going on, we’re trying to figure out how this fits into my surgery/recovery schedule. I could be “out” for six to eight weeks if they do the shoulder replacement.

Speaking of doctors, I was supposed to have seen my rheumatologist last Friday, but since I had been away from the office all day Wednesday and part of Thursday with plumbers and A/C guys, I bumped it to this Wednesday. Just when I think I’m starting to get some relief from restarting the drugs, I’ll need to get off them for surgery in three weeks. With all of this stress in my life, I’m surprised I’m not home in bed with a flare …. (perhaps I shouldn’t tempt fate!).

So rheumatologist this week. Pre-op check up next week and shoulder surgery three weeks from today.

That’s all I know for now. This will be an interesting week as we get more visibility into the home situation. I’ll keep you posted. Until then, thanks for checking in.