19 Monday Nov 2012
Posted in Uncategorized
All: The holidays are busy for me as I am sure they are for you, so I just wanted to take a minute to wish us one and all a happy, healthy, flare-free Thanksgiving. I will update after Thanksgiving on the job situation and other news.
Until then, thanks for checking in.
15 Thursday Nov 2012
Posted in Medical, Rheumatoid Arthritis, 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:
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.
31 Wednesday Oct 2012
Posted in Health, Medical, Rheumatoid Arthritis, Shoulder Surgery, Uncategorized
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.
22 Monday Oct 2012
Posted in Medical, Rheumatoid Arthritis
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.
18 Thursday Oct 2012
Posted in 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.
08 Monday Oct 2012
Posted in Medical, Rheumatoid Arthritis, Shoulder Surgery
Tags
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.
28 Friday Sep 2012
Posted in Medical, Rheumatoid Arthritis, Shoulder Surgery
Tags
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.
18 Tuesday Sep 2012
Posted in Medical, Orencia, Rheumatoid Arthritis, Shoulder Surgery, Weight Loss
Now that I’m two weeks out from my surgery, I’ve taken the last of my RA meds (and associated drugs like folic acid) for about a month. That’s two weeks before surgery and two weeks after surgery.
My Orencia injection schedule has been on Wednesday evenings and considering that it’s now Tuesday, like any good drug addict, I’m feeling the need for my “fix”. I can tell the Orencia’s working because I start feeling worse when I’m due for the next injection. I am not looking forward to the next few weeks. Last March when I had knee surgery, my surgeon had put me on Mobic before and after the surgery, which helped alleviate the symptoms. This time I’m going cold turkey. (Oh joy. With all the stress in my life with the home repairs and work and just stress about the surgery, you think there’s a flare in my future????)
Yesterday I went to see my internist for my pre-op exam. The surgeon had sent a list of tests that he needed so they sent me down to the lab for blood work and my chest X-ray before I saw the doctor. (Which is good because they electronically send the chest X-ray to the doctor and we can look at it together in the exam room.) I have “bad” veins when it comes to drawing blood and especially IV’s, but I got through the blood work without too much trauma. Then I met with the doctor and based on our conversation and my last blood work, he ordered another test. He thought that they could just use the blood they’d already taken, but as I was checking out, the lab called and said they needed more, so I got to get jabbed again. The inside of my right elbow is just one big bruise this morning.
In the midst of all this, I’ve managed to lose another couple of pounds. The chaos of no air conditioners and the house in a bit of an uproar with contractors and consultants and adjusters all running around has thrown me off my usual cooking routine, so instead of staying on the ultra-low cab diet I was on, I’ve just concentrated on eating healthy and lightly. I still have a way to go, but seeing progress on the scales helps me keep on track.
On the house front, it seems like we have had lots of people come through, but haven’t made any real progress or know very much more than we did two weeks ago. The insurance adjuster came, but she doesn’t do estimating, so we had to wait for the flooring guy. The flooring guy said that he can’t fully estimate until they demolish the existing floor because he won’t know if the sub-floor needs to be replaced, but right now we believe he’s going to recommend replacing all the floors except the tile in the master bath. (Sigh.) There are still fans blowing under my floors, drying everything out. Today the guys are bringing four more fans and a dehumdifier.
We need to get everything done so the mold can be treated by the end of next week. The environmental consultant suggested that it might not be a good idea for someone who has just had surgery to be in the house while they were doing the treatment so we have to get it done before the procedure.
Our plan is, right now, to get through the drying process and the mold treatment and not start any of the real repairs until after the first of the year. I think we’re going to take the opportunity while we’re moved out of the house to get some other things done such as repainting the interior of the house (which it needs). It’s going to take us a while to get all that figured out. Plus, if they wind up replacing my shoulder, I could be out through part or all of November anyway, and I’m not going to deal with packing and moving furniture and construction while I’m recovering.
So on one hand, my life seems like it’s up in the air as I don’t know the real situation with the house and the insurance and what kind of shoulder surgery I’m going to have. On the other hand, we are making progress getting things dried out and the mold taken care of and moving forward with necessary steps needed before surgery.
Here’s hoping your life is a bit more settled than mine. Thanks for checking in.
14 Friday Sep 2012
Posted in Medical, Rheumatoid Arthritis
In case you missed it, last week there was a huge announcement concerning the study of “junk” DNA. The reported findings were astounding and offered not only a glimmer, but a million watt strobe, of hope that someday scientists might learn why one person gets cancer (or rheumatoid arthritis), and someone else doesn’t. You can read the New York Times article (with additional links) here.
I have to say that every revolutionary scientific discovery has been met with controversy and skepticism, and this one is no different. (Read the Forbes rebuttal here.)
Let me tell you, I want this to be true. I really, really want there to be an “off” switch to RA. Given all the pills and injections and stretches and ice packs and rest I do just to try to keep it at bay, I’d do 10 or 100 or 1000 times that effort if I could just friggin’ stop the disease.
We all know there are no easy answers and even now, just a few days after the announcement, lines are being drawn in the scientific community dividing the believers and the nay sayers. Like any great discovery (or announcement thereof), it will take time — no doubt decades — for the truth to be known.
But what I do know is that the investigation of this potentially revolutionary DNA study will yield amazing discoveries. When I look back at the acknowledgment of the early AIDS/HIV cases and how much we’ve learned about the immune system because of it, it’s astounding. Now we have the opportunity to examine the effect that so-called “junk” DNA has on a multitude of chronic, deadly, and debilitating diseases.
I don’t think you can have progress without controversy, so I am heartened by the amount of turmoil this announcement has caused. It is only right that something of this magnitude be examined and explored. And if it is true (prayers said, fingers crossed, lucky penny in my pocket), then maybe that examination and exploration will yield some answers and some real cures for what ails us.
I am hopeful, for all of us, that we are on the verge of one of the greatest medical findings of the age.
Thanks for checking in.
13 Thursday Sep 2012
Posted in Rheumatoid Arthritis, Shoulder Surgery
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.
