Sausages for Breakfast

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Most of the time I like new things, but when it comes to RA, not so much.

I woke up Saturday morning (three days ago) with sausage fingers on both hands. They were swollen and stiff and it hurt to the point that I couldn’t make a fist with either hand. As the day wore on, the swelling and stiffness subsided and my hands were as back to normal as they ever are. Sunday was fine, but on Monday, the sausages were back. This morning, again, but not so bad.

Not sure what’s going on. I have OA in my distal finger joints due to years of typing, but really haven’t had a lot of issues in my hands from RA. This is new and I’m not happy about it.

My check up with my rheumatologist is tomorrow, so we have one more thing to talk about. I’m afraid that she may want to change me from Orencia (to what, I don’t know) or increase my Arava, but as I am scheduled for back surgery April 1, I only have another week or so on the meds before I have to discontinue them in preparation for surgery. It’s not going to do any good to start a new routine at this point.

In other news, tomorrow is also my second Euflexxa injection. I’m afraid that my previous euphoria over Euflexxa was a bit premature. The “it doesn’t hurt any more” only lasted until about noon on Thursday after the injection on Wednesday afternoon. In fact, over the weekend, my knee hurt as much or more than it ever has. I don’t know if there was some residual pain associated with the injection or what, but right now I can’t say that I have any positive improvement. Of course most people don’t experience any improvement until the second or third/final injection, so I was being a bit optimistic.

Then the following day is my myelogram. Can’t say that I’m looking forward to that. Having anything injected into your spine just seems wrong.

In still other news, we’re getting the house back in to shape. I have to say that the knee and back pain are not helpful to the lifting and bending and stretching required to unpack and reorganize a house, so it’s certainly going slower than I’d like it to, but we’re getting there. Answers to requests for pictures will be forthcoming, I promise.

I hope that whatever was on your breakfast plate (whether sausages or some other wonderful meal) was both healthy and filling. Thanks for checking in.

First Euflexxa Injection

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It seems like I’ve been whining a lot lately. True, my life has had its challenges, but constant whining gets old. So I’m pleased to report some good news.

Yesterday I had my first Euflexxa injection in my right knee. Like most of us facing a new treatment, I had spent a good amount of time researching the drug, its effectiveness, and of course what patient experiences I could find on line. I have to admit that I was most concerned about the pain of the injection. Even my orthopedic surgeon warned me that it would “smart”. He tends to underplay how much things might hurt so for him to forewarn me that it would hurt would be like describing World War II as a diplomatic event between civilized nations.

I did have his office prescribe some Valium to take before the injection. I believe that stress can make things worse, so I figured if I lessened the anxiety, it would be less painful. And, of course, I had my husband take off work and drive me because you shouldn’t be driving around (especially in crazy Dallas traffic) under the influence of drugs.

All this was much ado about nothing.

The Valium hadn’t really kicked in when I got to the doctor’s office, so I was still a bit anxious. But the fact of the matter is, the injection didn’t hurt. At all. I’ve had steroid shots that hurt a lot worse. The doctor didn’t use any numbing spray or other deadening agent. He just inserted the needle, injected the drug and we were done in probably less than five seconds. A quick bandaid and I was out the door.

The requirement is that you should stay off your feet as much as possible for the first 48 hours, so I went home and propped up in bed. Of course, by then the Valium had kicked in and I was out like a light for a couple of hours.

But I slept well last night. For the first time in weeks — maybe months — knee pain didn’t wake me up. And when I got up this morning, my knee didn’t hurt like it usually does. It takes me about 45 minutes in the morning to get through shower, hair and makeup, and by the time I got ready for the day, my knee started to hurt a bit. And I admit I was pushing it a bit being on my feet for that amount of time. But now that I’ve been sitting and working, the pain has gone — again.

I really wasn’t expecting much. Most people don’t realize any pain relief until at least the second injection, so to say that I am both amazed and hopeful is an understatement.

Next Wednesday I have my regular check up with my rheumatologist and my second Euflexxa injection. Then Thursday I go in for the myelogram prior to back surgery. There’s a possibility that I may have to postpone surgery from April 1 until the second or third week in May. I will know more when I meet with the doctor to discuss the myelogram results. I have to travel in early May and, even though my husband will be with me to wrangle the bags, the doctor may not want me to travel that early.

So it’s nice to report some good news for a change. I hope the new in your life is also good. Thanks for checking in.

Looking Ahead

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It appears that the AARP (American Association for Retired Persons for those of you under 50 or not in the US) has launched a new series of thought-provoking television ads. One of them in particular caught my attention. It featured a man driving a car and made the comment that the car has a small mirror for you to occasionally check what’s behind you, but a large windshield for you to use to look ahead. This is, of course, a metaphor for life saying that while it’s good to remember where we’ve been, we need to focus on the life ahead of us.

I was diagnosed nearly five years ago and looking at the statistics for disability within the first five years I was, if not panicked, at least concerned. Perhaps depressed. Definitely unhappy. However, almost five years later, I’m not among the disabled. True, RA has certainly taken its toll as documented in this blog with multiple surgeries, including replaced joints (and we’re not done yet) and an ever-changing treatment plan. However, it’s been a productive five years working full-time and traveling every chance I got.

But that front windshield is difficult to see through because it’s clouded by the unknown. I do know that I’ve got back surgery and knee surgery ahead of me — both this year while I still have COBRA benefits from my last job. But what continued toll I can expect from RA or what I’ll do about it when my COBRA benefits expire are big question marks. The only thing I can do is plan for the worst, but live my life expecting the best.

I do have some immediate, near-term events visible in my windshield.

In two days I have my first Euflexxa injection. My knee is getting worse, almost by the day, so I am hopeful that the injections help. They are supposed to be pretty painful so, particularly having a strong vasovagal reflex, I am stressed. The doctor has prescribed some valium for me to take in advance. I find that things hurt more if you’re stressed about them, so I’m hopeful that the valium will help.

Next week I have my regular check up with my rheumatologist and my second of the three Euflexxa injections along with my myelogram in anticipation of back surgery in a few weeks.

Ah, the joys of RA. You get to meet such interesting people such as orthopedic and neuro surgeons.

I hope that whatever is in your windshield brings a smile to your face. Thanks for checking in.

Where do I go to resign?

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Several years ago I worked with a woman who, due to a number of changes in the company, decided to quit her job. In a time where people actually wrote memos instead of text messages, she spent about an hour carefully composing an eloquent, concise letter of resignation. Then she came to my office a bit bewildered. The entire management team was out. She had no one to whom she could deliver her resignation.

I suddenly feel a lot like her. I’m ready to get off this RA joy ride, but I can’t find anyone in charge to accept my resignation. Some days I can cope, but lately it’s been hard and I’m tired of it.

Last Thursday I went back to see the neurosurgeon concerning the results of the MRI on my back. This is one of those times I really wish the pain was in my imagination. herniated diskUnfortunately, it’s due to a herniated disk and severe degeneration of the adjacent two vertebra. It appears that the herniated disk is pressing against a nerve coming out of the right side of my spine causing pain. I’m currently scheduled for surgery on April Fool’s Day. They’ll remove the disk and fuse the two vertebra together. Sometime prior to that time, I have to go in for a myelogram so the doctor can get a clear image of what’s going on in my back. Nothing like getting needles stuck in your spine.

In the meantime, I will start the Euflexxa injections in my knee with the hope that it will hold my knee pain at bay until I can get through this back situation. Then I’ll worry about surgery on it.

The bad news is that I’m still in the midst of unpacking having moved back in after all the renovation/repair work in the house. I spent all day Friday through Monday unpacking and half a day Tuesday. I was in so much pain by Sunday night that I dug out an old Percocet prescription just so I could go to sleep. Monday I started a prednisone taper. Between the steroids and the pain meds, I’m making it. But the steroids will be gone in a couple of days, and I have one more shipment of about 80 boxes coming to the house next week. Sigh.

The good news is that (at least for the moment) my health insurance issues seem to have calmed down. Things that got denied have been reprocessed and I’m no longer in fear of having to go to doctors appointments with the assurance of health coverage. (Fingers crossed that it lasts!)

I don’t know that my back issues are related to RA, but when you do have RA, it’s a safe bet that you have a lot of inflammation and that certainly can contribute to disk and vertebra degeneration. The knee issues are definitely RA related. I’m going to have an interesting conversation with my rheumatologist next month. I haven’t had a lot of flares or swollen joints, but I can’t help but wonder if my treatment plan is really working when I have the problems I’m having.

So, in the meantime, if you can find out who is in charge so I can send in my letter of resignation, I’d appreciate it. Thanks for checking in.

Silent, but deadly

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My step-brother had one of those momentous birthdays a few months back and, as he was officially going to be an “old fart”, I felt it only appropriate that I gave him a birthday card centered on, well, flatulence. It wasn’t just a short joke on the subject — it was an entire dissertation on the 10 most common types. I don’t remember them all, probably because I was laughing so hard I couldn’t read the card, but the one type I remember most clearly was “silent but deadly.” You know, the one when you’re on the elevator and no one heard it, but suddenly everyone can smell it. (Eewwww!)

Anyway, it got me to thinking that there are no doubt lots of different kinds of RA. RA Warrior has certainly done an excellent job documenting the striking difference between patient experience and what they teach doctors in text books. Just reading a few RA blogs will give you quite a bit of anecdotal evidence that no two cases are alike.

Like that sulfurous elevator demon mentioned above, I’ve decided that I have the silent but deadly type. For all practical purposes, I lead a full, busy life and usually don’t give my RA a great deal of thought unless something provokes me to do so. However, there’s no doubt that I have a very active case of RA eating away at me.

The most recent evidence of RA’s activity was my visit to my orthopedic surgeon for my knee follow-up. I had him pull the X-rays from last March and last December and even to my untrained eye there is a definitive narrowing of the joint. The doctor says that it looks like RA because when it’s osteoarthritis, there are a lot of bone spurs around the joint from the wear and tear. My joint is actually pretty clean, except for the fact that it’s deteriorating right before our eyes. We’re going for the hyaluronan injections, probably Euflexxa, depending on what my on-again/off-again insurance decides they’ll approve.

But the bottom line is, I’m going to need to have the knee replaced. Probably between now and when my COBRA insurance runs out in early 2014. In fact, probably later this year. The Euflexxa is just a hope that may relieve some of the pain between now and when we can get the surgery figured out. It’s certainly not going to cure anything.

Thanks, RA.

In other news, Dr. Spine Guy has ordered an MRI of my back to see what’s going on and/or what’s changed since the last time we did an MRI two years ago. That’s in four days, then I see him three days later for the result. I just hope I don’t have to figure out time for back surgery before the knee surgery.

Sigh.

The really good news is that the insurance scramble has been sorted out (again) and hopefully all these new medical miracles in my life will be at least partially covered.

In other good news, the house is slowly but surely being reconstructed. Like the mummy in those old movies, it’s sucking the life out of my checking account and rebuilding itself. Seriously, it’s going to be great when it’s finished and the movers are supposed to return our stuff in about a week. I’ll post pictures (I promise).

I hope whatever type of RA you have, that it leaves you comfortably alone and your life is filled with pain-free health. Thanks for checking in.

Just when you thought it was safe to go in the water …

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The first of the year is a busy “doctor time” for me. A week or so ago I had my annual mammogram and retina check (not the same doctor) followed a few days later by my every-four-month visit with my internist. This week I have my annual dermatology exam, meeting with the spine guy about the issues with my back and follow-up with my knee guy about the potential Hyalgan injection treatment for my left knee. In the upcoming couple of weeks I also have my regular rheumy check up along with the follow-up with my shoulder surgeon. And of course, there is the monthly run to the pharmacy that, between my prescriptions and my husband’s, runs me about $300 after insurance.

You see that’s the rub. It appears that there’s been yet another clerical error and not only am I not covered by insurance at the moment, I haven’t been since January 1. You’ll recall this happened earlier when I changed from employee insurance to COBRA at the end of November. This time it has to do with the annual open enrollment at the end of the year. The HR people are working on the issue, but I found out about this when I had to shell out $$$ for prescriptions this weekend. Going back to the claims statement, it appears that my earlier doctors appointments haven’t been covered, either.  I am just hopeful that they will resubmit the claim and, when they do, this mess will be straightened out. With the cash flow hemorrhaging I’m doing on the house renovation, I really don’t need to be paying full price for specialist visits.

The good news is that the house is moving along. After some issues, we’re finally getting the floors finished. I need an extra coat of paint in one room, then the painting is done. The kitchen cabinets are being installed even as we speak. We have countertops, tile, and clean up to finish, then hopefully the end of next week we can move home. (There’s a potential disastrous delay on the countertops in the works, but that’s another story.)

This weekend I decided that I would clean the kitchen tile well before the cabinets were installed. It’s not a very big area, but by the time I was done with a mop and a rinse, I could really tell the toll that RA has taken on me. What would have been a quick, painless job just a couple of years ago turned into an arduous adventure. My hands hurt, my back hurt, my knees hurt, my feet hurt.

But again, good news. With all this stress and extra physical activity, I haven’t had a flare. (Fingers crossed.) I guess the meds are actually helping keep things under a level of control.

So that’s my life at the moment. Hope yours is rolling along smoothly. Thanks for checking in.

#105 Tie Your Shoes or You’ll Fall Down

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This morning there was a news story about a “Rules for Kids” book that was compiled by two young girls who both had younger sisters with which to contend. The news story didn’t cover all 187 rules, but it gave a few examples, and I was especially struck by #105 – Tie your shoes or you’ll fall down. What a wonderful way to express the old saying of Proper preparation prevents p— poor performance. (I guess it’s the “Everything I need to know I learned in kindergarten” approach.)

At any rate, it got me to thinking about rules to live by for people with RA. We all have them and, like parents with a new baby, when you’re first diagnosed, it would be nice to have an instruction manual.

Here are my top 10 rules. Feel free to share your own. Thanks for checking in and don’t forget to tie your shoes!

  • Remember, it’s a diagnosis, not a death sentence. Many, many people with RA live full, productive lives.
  • Do your research, but don’t panic. Thanks to the Internet, there is a wealth of information about the disease from medical sites as well as real-world patients. Learn what you can, but understand that each situation is different and that the worst-case scenarios are just that: “worst case”. There is no pre-defined path for disease progression or even medical treatments.
  • Find a rheumatologist whom you trust and with whom you can communicate. Don’t be afraid to change rheumatologists if you feel that your concerns are not being addressed. Your future treatment options and well-being are in this person’s care so it’s important you find the “right” doctor. Once you find that person be clear about your health and concerns. S/he can’t help you if you aren’t honest about how you’re doing.
  • Give yourself permission: permission to not feel your best, permission to not always do everything, permission to let your body rest when it needs it, permission to live your life to the fullest extent possible.
  • Don’t give up. RA will be part of your life going forward. If something isn’t working for you, try another treatment option or augment what you’re doing with other therapies such as physical therapy, massage, etc.
  • No one is perfect, but we can all be better. Do the best you can for yourself. Stress, unhealthy food, lack of sleep, and lack of exercise can increase your inflammatory response. Limit those factors and triggers. Make “being healthy(ier)” part of your every-day life.
  • Enjoy your life. It’s easy to be overwhelmed by a chronic disease. Sometimes it takes a conscious effort to count your blessings and revisit those things that make you smile. Always keep your sense of humor.
  • Share your burden. You’re going to need the help and understanding of your family and friends. They can’t be there for you if you don’t share your needs. Seek out a support group — either in person or any of the wonderful resources on the Internet.
  • Take one day at a time. Every day will have its challenges and rewards. RA can turn around 180 degrees in a matter of minutes. Do what you need to and can for today and worry about tomorrow when it comes.
  • Tie your shoes or you’ll fall down. In other words, be prepared. Your life will be filled with unexpected challenges. You need to do the best you can for yourself in order to meet them. Take your medications, get your rest, talk to your doctor, share with your friends and family. Then if you need a “Plan B” or if you actually do “fall down”, you’ll be in the best position possible to recover.

A lot to catch up on

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Happy New Year. It seems like it’s been a while since I posted (or for that matter, had a chance to catch up on the many other blogs I enjoy). I have been working on a project that’s taken my nights and weekends and just finished up today. So, whew, let me catch you up on recent events.

December brought two doctor’s appointments — my normal rheumy check up and an impromptu visit to my knee surgeon.

The rheumatologist appointment went well. Even with all the stress in my life, my RA has stayed petty much at bay. It appears that my current cocktail of Orencia and 10 mg of Arava is helping. My major complaint lately has been fatigue, but with everything going on, it’s not surprising that I’m tired.

The knee surgeon is a bit of a different story. My left knee (the one that had surgery in March) has been bothering me. It’s not RA related (at least not directly). It’s very specifically painful and it’s painful when I put weight on my knee. X-rays revealed increased osteoarthritis in the knee and narrowing of the joint. The only real “cure” is a knee replacement, but we’re not there (yet). What I didn’t do, and should have, is ask the doctor to compare these X-rays with the ones we took in March. That would show us how quickly the knee is degrading. As it was, it was the Wednesday before Christmas, so the doctor did a steroid injection to help me through our annual Christmas trip. It did help through the trip, but it’s pretty much quit working a couple of weeks later. We’ve been moving out of the house this week getting ready for our major renovation. All the lifting, packing, toting, etc., etc., etc. has really taken its toll.

The next step(s) on the knee is (perhaps) a series of Hyalgan injections. These are given once a week for five weeks and help replenish the natural lubricating fluid in the joint. I’ve found some other medications (such as Synvisc) that don’t require quite so may injections. I see the surgeon again in February and we’ll discuss the options. Of course all of this has to be pre-approved by the insurance, so I’ll know more in February. Unfortunately, neither Hyalgan nor Synvisc actually “cure” the osteoarthritis and eventually the knee will have to be replaced. With my current situation, being on COBRA, I need to think about this.

In other news, as I mentioned, we’re getting started on the major house renovations. The movers will be here all this week, then we’ll demolish all the floors and subfloors next week. New flooring the following week, followed by new paint, and new kitchen cabinets. Sometime in early February we’ll be done. In the meantime, we’re camping out in an extended-stay hotel. If this doesn’t throw me into a flare, I don’t know what will.

So, good-bye and good riddance to 2012. While my RA was pretty well-behaved, the rest of the year seemed like it was one round of bad news after another. I lost my step-mother in January, had knee surgery and shoulder surgery, lost a good friend and co-worker and inherited her department to manage, had a major water leak that requires replacement of all the floors and subfloors in the house, and got laid off. I’m hoping that 2013 is a much better year for us all.

Happy New Year. Thanks for checking in.

Insurance or the lack thereof

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We’ve all seen those movies where the person backs up one step too many and finds themselves falling over the balcony, or the cliff, or the edge of the building. Or perhaps they hear the crack of the ice before they fall in or the click of the trigger of the land mine they’ve just stepped on.

I’ve always imagined that would be the most horrible feeling — knowing that your life was suddenly and completely in danger and utterly out of your control.

That’s how I felt Tuesday night.

My husband and I had gone to have a nice dinner and, as the restaurant was close to the pharmacy, I asked that we stop on the way back to pick up a prescription refill that I’d called in. It wasn’t one of those “urgent” prescriptions, so I had not taken the time to pick it up for a couple of days.

The pharmacy aide who knows me by sight, was reaching for my prescription even as I approached the counter. Then he kind of looked at me odd, lowered his voice and asked, “Have you had a change in your insurance? When we ran this through, it came back that your insurance was terminated.”

Crack. Click. Fall.

Now I can’t disclose the particulars of my severance agreement with my past company, but I will say (to their credit) there was a great deal of understanding about my health issues and I had been assured that the transition from insurance to COBRA coverage would be seamless.

It was a relatively inexpensive prescription, so I just paid for it knowing that when all of this got straightened out I could file for a reimbursement. However this was also the night before my rheumatologi$t’$ appointment and I really didn’t want to pay that out-of-pocket, particularly since I thought she might be injecting a joint or two.

Next-morning calls to the benefit supplier indicated that they had sent the notification to the insurance company concerning my coverage. Calls to the insurance company revealed that if they had received the notification, it hadn’t trickled through their system as yet because my coverage was, indeed, terminated as of November 30.

This story has a happy ending for me. Frantic emails to my old HR team worked magic and by the time I got to my rheumy appointment, the insurance system was once again agreeing that I was covered.

I can’t forget, however, the horrible feeling of suddenly finding myself uninsured and the great relief that I hadn’t been in a car accident or serious fall for the previous week. And as I look toward this joyous holiday season, I can only send up a prayer for those who, unlike me, haven’t had happy endings to their employer-sponsored insurance plans and who face the future with families and chronic diseases, but without insurance.

When I count my blessings, insurance is surely near the top of the list.

The friends I’ve made through this blog are right there at the top as well. Thanks for checking in.

Updates

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It’s been busy since I last posted.

I spent most of last week setting up my workspace in a corner of my husband’s offices. I still have a few lingering technical issues, but I can basically work which is a really good thing because I have a rush project for a an old client that popped up. (It’s nice to be wanted — and busy!)

I had my second post-op follow-up with my shoulder doctor this week. Gold stars all the way around. I’ve been released from having to do any more physical therapy although I have to continue my home exercises. I go back in February when I also have my annual check up on the shoulder replacement in the other shoulder.

Next week is my regular check up with my rheumatologist. Overall, I’ve been doing well, but I have had a couple of weird things crop up. My left knee, which had surgery in March, has started hurting again. I don’t think it’s directly RA because it feels pretty good when I wake up in the morning, but gets extremely sore once I start walking on it. By the time I get ready and leave in the morning, I can barely make it up the four stairs from the parking garage to the sidewalk at my office. I think if it were RA it would be more random and not so directly tied to walking.

The other thing is that my back slips out of place. This has been going on for a couple of months now, but it is gradually getting worse. It’s now pretty consistently happening when I’m sitting and I reach or stretch to the side — for example, when I put my hand out the window to use the access card at the garage. It’s very sudden and very startling and very painful when it does it. It’s also started “popping” when I walk. More so when I’m carrying something, but even occasionally when I’m not. Going to that great medical authority “the Web”, it sounds like I’ve developed spondylolisthesis. Or perhaps it’s just my hypochondria.

So at any rate, it appears that in addition to my rheumy, I have visits to my knee doctor and my spine guy in my future. Not what I wanted for Christmas.

All in all, I’m doing pretty well, although it’s weird to be working again. This is the first week I’ve worked since surgery October 1. I’d gotten used to being a lady of leisure.

I hope you’re doing well also and that your holiday season is progressing nicely. Thanks for checking in.

 

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