… And counting

Due to a scheduling situation at the surgery center, my hip replacement surgery has been moved up a day to Monday, 1/27/20 at 9:00 am (7:00 am check-in). Which is fine by me. I’m ready to have it done and get on the road to recovery. I would have already had it taken care of, but I had to wait 90 days after the guided steroid injection in my hip last October.

So surgery in nine days. And guess what? (Another surprise …) Medicare now considers hip and knee replacement surgery as outpatient. Meaning that they’re planning on discharging me to go home the next morning. I was in the hospital for three days for the first one, and two days for each of the shoulders and the knee. Apparently there are some new techniques that make this feasible. At first, I was in total disbelief. But the fact of the matter is, you get no rest at the hospital, so I’m coming around to this getting home early is a good idea. At least at home I’ll have control of my recovery efforts — sleep, exercise, diet, medication — and that’s a good thing. I’ll also have in-home physical therapy and potentially some other medical support, so I should be good.

I went in for my pre-op testing and things look great. In fact, my metabolic labs (glucose, cholesterol, liver enzymes, etc.) and even my weight look better than they have in some time. With the holidays and stress, I haven’t been good about diet or exercise, so the only thing I can contribute this to is being off my RA meds (after my allergic reaction to Remicade in November). As I said in my earlier post, I’m not sure the meds have actually helped. Now it looks like there might have been some unforeseen side effects. But at least I’m healthy going into surgery.

I actually saw my rheumy earlier this week for my regular checkup. She’s at a bit of a loss of what to do with me since I’m basically out of options for treatment. It doesn’t matter because I can’t start anything new until after surgery anyway. She has suggested that we do an MRI of the sacroiliac joint to confirm/deny an AS diagnosis, but I’m waiting until after the surgery.

She has come up with a brilliant idea. She’s asking my surgeon to send my hip (and related stuff) to pathology to see what’s really going on with my joints — specifically to see if there is any inflammation or infection. We’ll see (1) if it gets done and/or (2) what it shows. (I’ve had a number of bits and parts removed — four previous joints, tonsils, gall bladder, etc., and I always wondered what happened to them and if I’d be put back together in the afterlife like some giant reverse Operation game.)

In the meantime, I’m just trying to muddle through and get ready as best I can with meals, meds, books on my Kindle, etc. It’s getting increasingly tough to do much. The hip limits a lot of my movements. I need help getting dressed, getting in and out of the car — most things. Bending down to pick something up is beyond me. But I have lots of assistive devices — like my husband — to help. I also have things like my cane and my grabber sticks. Some days (and nights) are easier than others. I will just be glad to get the surgery done and start getting better.

I appreciate the fact that you took time to read all the way down to here. You’re the best! Thanks for checking in.

I dream of wheels

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All my life I’ve been interested in other peoples’ dreams. While I always thought it was too impertinent to ask, I’ve especially wondered about people with physical limitations. Are people who use a wheelchair able walk in their dreams? What do blind people experience in their dreams? Dreams are the open door into the most personal recesses of the mind, but there is a direct link from the physical world to that subconscious realm. If the mind can help the body be better, what effect does the body have on the mind?

I’ve used a wheelchair temporarily a couple of times in the past when I’ve been recovering from surgery. A few weeks ago when we were in Las Vegas for the Christmas holiday and my left hip was self destructing, I rented one just to help me get around. I’ve now purchased my first wheelchair. (I actually ordered it on line from Amazon while I was still in Vegas and it was waiting for me when I got home.)

On one hand, it’s great for mobility (especially at the end of the day when I really get sore). On the other hand, it’s a tough mental barrier to cross. But it’s a nice chair with all kinds of adjustments and I’ve got it fitted out with a cup/wine holder. (I haven’t figured out how to paint the flames yet). I told my husband that it was weird to be able to move across the room and it not hurt. In spite of the ego misgivings, I’m glad I have it because there are times I need it and I’ll really need it as I recover from hip replacement surgery in two weeks (January 28). Right now it lives at home because it’s too heavy for me to lift in and out of my car, so my cane gets to go out with me.

I’ve been using both the cane and wheelchair since the Christmas trip. A couple of nights ago, I had a dream where I was going all over this building between meetings and I was in the wheelchair. Never had a wheelchair dream before. The dream was about the people and the meetings, but there was a definite wheelchair theme involved. I remember thinking that I was glad I was in the chair because I could never walk so much. But as I went about my business, I would run into the obstacles — like narrow doors and stairs and things that are difficult or impossible to negotiate in a chair. I think it was a very real reflection of my life here and now.

I’m not sure why the chair showed up in my dream when it did. It hasn’t visited Dreamland since (although the hip pain doesn’t allow me much uninterrupted sleep in which to dream). I’m glad of two things: (1) that I have a great tool like this to help me get accomplished what I need to do every day and that (2) it is (hopefully) a temporary situation until I recover from surgery in six or eight weeks.

If you want to know a real superhero, then just find someone with a chronic illness that also has to deal with the complexities of navigating life on four wheels instead of two feet. And there are real superheros out there including people like you who care about others — which is the first and foremost quality of any superhero. So, superhero, thanks for checking in … and sweet dreams.

 

And the left hip makes five …

Remember when I started whining about my knee/hip issues a couple of months ago (here: https://carlascorner.wordpress.com/2019/10/18/when-life-turns-left/) and it turned out that it was my left hip, not my knee that was the issue?

At that time, there was still a decent amount of cartilage in that left hip and the joint injection really helped. In the couple of months since then, things have taken a falling-off-a-cliff turn for the worse. Saw the ortho guy today and I’m bone-on-bone. Left hip replacement is scheduled for the end of January.

I was in so much pain that we had to rent a wheelchair while we were in Las Vegas for Christmas. If things had been refundable, we probably would have just cancelled for the first time in more than 20 years. Thought I could get along with a cane (which is really, really hard on my replaced shoulder), but not so.

So this makes my fifth replaced joint in 11 years — both shoulders, a knee, and the other hip.

Sigh.

I’ll keep you posted as things move along. Hope your holidays have (and will continue to be) joyful and pain-free. Thanks for checking in.

Learn to Speak Doctor

Every situation has its own language. This is true whether you’re visiting a different country, having a conversation at work or school, or even talking with your family. Your doctor’s office is no exception. Learning to “speak doctor” is an important part of making sure the two of you have the same understanding of your treatment.

I talk about this further in my post for rheumatoidarthritis.net here: https://rheumatoidarthritis.net/living/talk-doctor/

Thanks for checking in!

When is Enough, Enough?

First of all, let me say that I believe strongly in treatment for RA. I’ve seen too many people who didn’t seek treatment, or didn’t seek treatment soon enough, and have had permanent, debilitating damage. I am a western-medicine/pharma person, but I believe that whatever works for you is the path you should follow.

But I am also a bottom-line, results driven person. If something isn’t working, at some point you need to realize that you’ve invested enough into the situation.

I’m coming to the conclusion that I’m at that point with this whole chronic illness treatment situation. I posted earlier about my latest “failed” treatment and then the subsequent horrendous allergic reaction I had when we tried Remicade at the higher PsA dosage. I see my rheumatologist in mid-January and until then, I decided to take a medication break and just clear my system and my head. And frankly, for the moment I’m going to stop letting all this fretting over my condition dominate my life. I’m tired of being a patient and I really just want to go back to being a person.

But getting back to being a bottom-line, results driven person.

I was diagnosed 11 years ago. I’ve been on 11 different treatment plans. I’ve had 11 surgeries, including four joint replacements and two spinal fusions. I’m looking at a fifth joint replacement (the other hip) probably in 2020. In addition, I’ve had four epidural steroid injections for back pain and three endoscopies (related to inflammation in the esophagus). During this time, all of my lab results have come back 100% normal (except one really bad liver test caused by my DMARD). There hasn’t been any hard data — only opinion — that I have RA or PsA or other inflammatory disease.

I know that you can’t quantify the good that a preventive program does (e.g., how many cavities do you avoid by brushing your teeth twice a day?). But given the results I’ve had, I have to wonder if all the side effects, and time, and costs, and stress of 11 years of treatment have actually paid off. Would my life have actually been better (more enjoyable) if I’d just gone on about my business and lived my life? I’d no doubt still have had all the joint replacements and other surgeries, but I could have avoided all that other crap that comes with treatment, and doctors appointments, and pharmacy bills, and insurance claims, and labs, and all that potentially wasted time and money.

Layered on top of this is that I’ve about run out of treatment options. I’ve basically been on all the infused treatments that Medicare will pay for and I can’t afford the copays for the newer injectibles and oral meds. The cheapest alternative I could find would cost me $500/month plus another $100 additional insurance premium for the Part D drug policy that would cover it. (Medicare coverage makes you ineligible for patient assistance programs.) And I would do it if there was a guarantee that it would work better than the other 11 treatments I’ve already tried, but there’s not.

If I were in my 20’s or 30’s, there would be no question that I would be working to slow the disease progression by any means I could find. But I’m not. And while I’m not exactly ancient, there comes a point in everyone’s life when you realize that you have more years behind you than in front. These remaining years become increasingly precious and you start asking yourself how you want to live them and what’s really important to you. And the fact of the matter is (and this is a hard fact to face), even on a treatment that works, I’m not going to be cured — I’d just be on treatments forever.

(Does this sound like a mid-life crisis, a pity party, or what?)

The one thing I will never regret, though, is the wonderful friends that I would have never met had it not been for RA (or whatever this is). I’ve come to know and love some amazing, strong, funny, wonderful people that not only carry the burden of their disease, but help others carry theirs as well. Thank you so much for being in my life and inspiring both me and so many others.

So here’s the current thinking/plan.

I’m staying off RA drugs until I see my rheumy in mid-January. Depending on how I feel, I very well may take a (much-) longer treatment vacation (and maybe a new infused drug will be introduced). The good news is that I’ve been through this long enough that I know when a plan isn’t working and am smart enough to go back to treatment if I need to. In the meantime, I’m going to focus on being a person, not a patient.

Thank you so much, once again, for checking in. May your holidays (however you celebrate or don’t), be blessed and may 2020 bring us all good health and happiness.

 

 

 

 

… and left again

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So I earlier whined, I mean posted, about my travails and you, my dear tribe, came through with some suggestions that Remicade at the higher PsA dose might be an answer.

Well (first) woohoo! My rheumatologist agreed and I went in just over a week ago for my first starter dose. They hit the vein the first time and things went swimmingly. I felt a bit down for a few days, but I could tell it was a stronger medicine than I was used to.

Then (second) boohoo! I had an allergic reaction to the Remicade. I got to spend last Saturday morning at the urgent care clinic and the rest of the weekend on antihistamines and steroids. I’m now off Remicade forever. (I started to post pictures of the rash, but even I’m grossed out by them …)

So I don’t know where we’re at, except that I’m just tired of it all. I spoke with my rheumatologist by phone and she was struggling to come up with an idea. I see her right after the first of the year and I’ve convinced her to let me just “exist” without additional treatment until then. By then my system should be more clear of the Remicade and I’ll have a chance to explore some options (and Medicare payments) as will she.

So I guess my holiday present is no RA drugs. (She wants me back on methotrexate, but at the rate my hair was falling out this time, I’m not sure that’s going to happen.) I need a break.

I have so much to be thankful for, and especially for the wonderful group of people I’ve met through this blog. Hoping your holidays (however you do or don’t celebrate them) bring you joy and that you are able to observe them in good health. Thanks for checking in.

Love, love, love my tribe!

It’s taken a chronic illness for me to find my “tribe”, but boy are you guys great!

I hate that it’s taken me this long to write this post and say thank you to so many of you who reached out to me (with lots of love) when I felt like my world was going sideways. (In my defense, the tornados hit Dallas right afterward and I was without internet for a week, then — since I work from home — have scrambling to get caught up on client work. Excuses, excuses, excuses …)

Both Lori-Ann French Holbrook and Leslie “Wren” Vandever suggested that Remicade might be a good alternate therapy for me since Simponi Aria has quit working. I’d been on Remicade before (without effect), but Lori-Ann pointed out that the dose for PsA is much higher than RA. (I did not know that!) Since I have some skin involvement, my rheumatologist has agreed to try Remicade at the higher dose to see if it works. This just shows the power of community as well as how so many of the inflammatory diseases are connected. I get my first starter dose of Remicade today.

And when we can get together in person, magic happens. Many of you may have been already seen the great picture taken when Cathy Kramer and Molly Schreiber came to town to get an early start on Molly’s 40th birthday celebration. (There were a lot of social media posts going on that weekend!) You can’t see it very well in this

Cathy Kramer, Molly Schreiber, and me celebrating an early birthday with Molly.

picture, but Molly is wearing a wonderful 40th birthday tiara. I haven’t heard if she’s taken it off yet or is just wearing it all the way through her actual birthday in a couple of weeks. (I’d wear it all year …)

I’ve always said that I’m hard-pressed to say anything good about this disease EXCEPT that it has brought me into contact with some wonderful, wonderful people.

Thank you so much for being there when I needed you and thanks for checking in.

When life turns left

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You know when you’re just rolling along and life decides to turn left when you’re not looking? A couple of things have happened to me health wise that has me saying WTF? (pardon the acronym).

So the first thing is my left knee. Or hip. Or something in that general area. I’ve been putting up with some issues for about six weeks or so and finally decided things were getting worse instead of better. I was pretty sure it was my left (replaced) knee because, well, that’s where it hurts. So I went to my ortho guy (who’s great) and after exams and prodding and turning things this way and that and taking Xrays, then taking more Xrays, the doctor says he thinks it’s not my knee but my hip. My main issue is that I’ve lost the ability to rotate my leg inward (think crossing your legs). It not only hurts, I physically can’t do that any more. This makes getting dressed, getting in and out of cars, etc. etc. very troublesome and very painful. However, it seems that this action is controlled not by the knee, but by the hip. The IT band that goes from the outside of the hip to the knee is definitely involved, but the Xrays of my hip are also showing some concern. So yes, I get to go to physical therapy for four weeks, but I also am having a radiologist-guided steroid injection into the hip joint. (Can you say, “ouch!”?)

Here’s the kicker: If the steroid injection provides significant relief, we know it’s the hip, right? Well, if it truly is the hip, I may be looking at (another) hip replacement sooner rather than later. So instead of getting a little love for my knee, I may be looking at a chunk of titanium for my left hip. I’m scheduled for the injection the middle of next week, so we’ll see how it goes. If the injection doesn’t help, then we go back to square one. If the injection does help, well, then I guess I’m scheduling major surgery (again …). This will be my fifth joint replacement in 11 years.

The second thing, in some ways, is even more of a left turn for me. I’ve always wondered whether or not I really have RA. Or something else. Or nothing. (Kind of like the little girl thinking she’s really a princess instead of a child of boring suburbanites.) All of my labs (including RA factor) have always come back totally normal, so there is no strong indication of RA, although there is no question that I have some kind of autoimmune/inflammatory arthritis. My latest treatment plan (of the 10 I’ve been on) has basically quit working and, in discussing this with my rheumy last week, she hit upon the fact that I get a lot of skin-related issues when my symptoms act up or treatments stop working, including a recent bout of inverse psoriasis (which contributed to my virtual friend and fellow advocate, Lene Andersen getting a hospital stay). So while I don’t have plaque psoriasis or even ongoing regular psoriasis, my doctor is considering that I might actually have psoriatic arthritis (PsA).

So why is this a bad thing?

Well, there are two issues for me. The first is that having a new diagnosis opens up different classes of drugs. Since I’ve basically failed on all but one of the RA-approved medications, having something new to try should be a good thing. Except that those drugs are all injections. Under Medicare, injections are covered under the Part D pharmacy plan which has copays rather than the Part B medical that generally covers infusions at no cost to me. Under my current plan, MY yearly cost of the cheapest PsA medication would be $152,000. In January, when I can change plans, it would still be $6,000 a year or $500/month. And since I’m on Medicare, I can’t participate in any patient assistance programs. So basically, I can’t afford a new diagnosis. (Well, okay, I can afford the diagnosis, just not the treatment.)

The second thing, to me, is somewhat more difficult for a variety of reasons. A few years ago I retired early due to RA. Not having kids, my career had always been a huge part of my identity. I was well known in my field and I had an executive position in an industry leader. All of a sudden, that was gone. I suddenly became “just” an RA patient. I’ve embraced that role, becoming more active in advocacy and working with both patient groups and pharma companies to support the patients’ voice in the healthcare space. If I no longer have an RA diagnosis, I lose that identity, too. I can still represent the autoimmune/inflammatory disease community, but I will no doubt lose the ability to continue with the various RA-specific patient advisory boards and communities I’ve come to enjoy so much. I can build relationships in the PsA groups, but I have more than 11 years invested with RA. Somehow I feel like I’m being laid off. (Is that weird? Yes, I know it is, but, is it really weird?) My rheumatologist did a flurry of tests that will hopefully provide some clarity on the situation. I usually see the results in a few days, but the lab says it will be another couple of weeks before I hear. In the meantime, I’m back on injected methotrexate and continuing on my biologic which might or might not be working (oh, joy).

So here I am. In the left-turn lane. With my blinker on. Waiting for the green light so I can go somewhere new. Or not.

These diseases make life difficult in all kinds of ways, including ways you don’t expect. I hope your life is far from difficult. Thanks for checking in.

 

 

Words I thought I’d never say …

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I’m a pretty outspoken person, but there is a list of things I never expected I’d say. “I hope it’s a flare,” is certainly close to the top of the list. A friend of mine with RA had tweeted that some unusual pain/soreness after her workouts that had been going on for a while. I responded that I hoped it was “just” a flare.

I explain myself in my recent post at RheumatoidArthritis.net, here: https://rheumatoidarthritis.net/living/pain-progression/

Thanks for checking in!