Bye, bye, baby, Goodbye!

I started this blog nearly 15 years ago when there were few patient-centered resources for RA. I’ve had some amazing experiences, vented loudly about insurance and copays, shared what I knew about treatments, and (most importantly) made some life-long friends.

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In the meantime, there has been a growth of sites where those with RA and related conditions can find reliable information and connect with community. There are truly some informed, funny, sympathetic, and reliable people working on behalf of patients.

Also in the meantime, my blog has been pretty much abandoned like a much-loved toy sitting in the corner waiting for attention. I’ve found other avenues for my advocacy and other channels to connect to the RA community. The blog has served its purpose and served it well. But in the time of New Year’s resolutions, I’m letting go of things rather than neglect them. I’m closing the site sometime over the New Year’s holiday.

I’ve loved sharing my story with you and even more having you share your experiences with me. I will always treasure the great friendships I’ve made. I spend more time than I should on Facebook and, if you’re interested, invite you to find me there.

And then there’s this

It’s been 10 days and I’ve been trying to figure out how to write this post.

Image from MedicineNet

Last November I had a TIA (“mini stroke”) that I wrote about here. At that time, the most exciting thing was the ride in the ambulance. I knew that once you have one, you are almost guaranteed to have others and it’s often the indication of a major stroke to come.

Since then, life has gone on. My doctors’ appointments and labs have gone well although, as part of life as we know it, I’ve developed some other issues that don’t warrant mentioning here. There’s been a six-month process of moving my husband’s architecture business to a home office. The pandemic is still very much present in Texas (where our governor and his anti-masking policies haven’t helped). You know, life.

Death is also part of life and last May we lost my amazing SIL to a totally unexpected brain hemorrhage. She was a heart thread in her community where she touched lives of thousands working in the school for decades.

So about 10 days ago, also unexpectedly, I had another TIA. Sitting there eating dinner with my husband and suddenly I couldn’t speak. Another trip to the emergency room. More tests. This one was also mild, but it was (just slightly) more severe than the last one. And while I’ve had a bit of a lingering headache, I haven’t had any after effects. I’ve been able to find a good neurologist (with a capable staff). I’ve had an MRI of my brain (results pending), I’m on blood thinners for 30 days, and when I see my cardiologist next week for my regular stress test, I’m supposed to discuss some heart monitoring in case there are any intermittent Afib or other issues that might be contributing to the problem.

The major difference between this incident and the previous one is that at one point, I really thought I was going to die.

After the initial shock of being diagnosed with RA more than a decade (and five replaced joints) ago, living with the disease became just another one of the daily challenges. In my mind, RA was just adding to the potholes in the long road of life ahead of me. While no cure, there were treatments and a certain amount of control (diet, exercise, lifestyle changes) that I could employ. This is not RA. If life is a road, and RA is a pothole, then strokes are what washes the bridge out from under you car when you’re going somewhere else.

I feel like I’ve lost my footing. A control freak, I’m doing what I can and when tests are back and a plan is made, I’ll do more. But there’s no question this latest incident has given me a new perception of things.

I hope whatever sudden events in your life have been happy ones. Thanks for checking in.

And, so …

There are two things to know: seronegative RA is hard to quantify and I haven’t been on a “formal” treatment plan since November 2019. The third thing to know is that I am a strong proponent of treating RA. Slowing the effects of the disease is possible but recovering from permanent joint damage really isn’t. I believe that treatment (1) should be in consultation with your doctor and (2) treatment can be whatever works, whether pharmaceutical, holistic or a combination of the two.

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Looking for a viable (and affordable) treatment plan, in November 2019, we upped the dosage of an infused biologic which had previously been effective but eventually quit working. We were hopeful that the increased dosage would once again be effective. I had a significant allergic reaction – not enough to be life-threatening but enough that I had to seek medical intervention. I was scheduled for my second hip replacement about six weeks later – in January 2020, and since I would have had to stop treatment in advance of the surgery anyway, it was a moot point not to look for a replacement treatment at that point.

Recovery from surgery (and being off treatment) gave me the chance to assess my situation. I’d voluntarily (with my doctor’s approval) taken an occasional short break from treatment in the past, only to go running back. But all my labs since my diagnosis in 2008 have been stone, cold normal. Other than the couple of small breaks, I’ve been on a series of treatment plans, centered around biologics, since 2008. And while I felt better on treatment and symptoms like pain and fatigue were improved, I’ve still had five joint replacements and two spinal fusions, so my joints have still degenerated. So, after discussion with my rheumy, at my appointment after surgery recovery, we made the decision to just treat symptoms (pain meds when needed, the occasional Celebrex for inflammation) and, at least temporarily, to forego the search for a more aggressive treatment.

Fast forward to now.

I had my first in-person checkup with my rheumy since before the pandemic a couple of weeks ago. I’m doing okay. Not great but okay. My fatigue has actually improved since I’ve been off treatment (thank you, MTX), but my morning stiffness is a bear and painsomnia is my nightly companion. There are many days when my husband gets to help me out of bed. I have the occasional full-body flare. My inflammatory markers on my labs are still normal and the RF factor is still negative, but since I’m not on biologics/MTX other things like my liver tests are greatly improved. I think that being in lockdown with the lack of stress and focus on healthier, home-cooked meals has helped the situation. My rheumy ordered some imaging to see if the joints showed signs of inflammation, which came back basically negative, although my joints are still degenerating. (I will have to have both TMJ joints replaced at some point.) It should be noted that I also have Sjogren’s which could account for many of these symptoms. We continue to treat Sjogren’s and monitor the RA symptoms.

So am I in remission? Possibly. Being seronegative it’s hard to tell. But at this point, RA disease activity is low enough that I’m content to just deal with the symptoms until such point it’s apparent that a more aggressive approach to address the actual disease is, once again, necessary. I don’t know if that will last another week or another year. With RA, you really never know.

If there are any bits of experience/wisdom I’d offer from this latest part of my RA journey, there are these: (1) You know your body best, but you have to pay attention to what it’s telling you. Mine was telling me it might be okay to go off treatment for now. (2) Always discuss treatment plans (or lack thereof) with your doctor. While I know how I feel, my doctor sees things on exams, labs, and other tests that may not be apparent. There are instances where an RA patient has said they feel okay but the doctor sees early joint degeneration on imaging or other tests. The best approach is a combination of the patient’s experience and the doctor’s clinical expertise.

That’s my story (for now). I hope you are doing well. Thanks for checking in.

My “Insomnia Watch” Broke

Tags

Apple Watch Series 6, Fitbit Sense, Insomnia

Those of us who wake up at weird times in the middle of the night will understand what an “insomnia watch” is. It’s that timepiece you look at to try to figure out if it’s worth trying to go back to sleep or whether you might as well just forget about it.

Mine was a Fitbit Sense. It (theoretically) had all kinds of bells and whistles and apps and capabilities but the primary thing for me was that it had different clock face displays. The Sense basically has a screen you can customize and my display had large white numbers that I could read half asleep, in the dark, without my glasses. When I woke up at 1:30 am or 5:30 am, I could see what time it was and decide whether to try sleeping again. (I say “try” because it often didn’t work anyway …)

I really tried to like that device, but I honestly hated it almost from the first. It depended on a Bluetooth connection to my phone for a lot of functions and it simply could not stay connected. I’d have to restart it nearly every day just to get it to sync and, because I keep my phone on “silent”, I was missing calls and texts because I wasn’t getting alerts on my Fitbit. I’d just about decided to give up completely when the battery started depleting. I’d go to bed with 100% charge and I’d wake up with a 19% charge when previously it would stay charged for a couple of days straight.

The Fitbit is less than a year old, so it’s still under warranty. After spending some time (more time than I’d have liked) on the phone with the customer service rep, Fitbit agreed to a return/replacement of the device. The problem is, it is going to take a couple of weeks — a week for them to get it and another week to send back the new one. In the meantime, I have no tracking of heart rate, sleep, steps, etc. Plus, it’s my primary watch. (Unlike many people I know, I can’t get used to using my phone as a watch.) But the main thing is, I have no confidence that the new Fitbit is going to work any better than the old one did.

In the meantime, when I wake up at night, I fumble around until I find my phone (and my glasses), to see what time it is. After all that, I’m awake whether I want to be or not. (Thus defeating the whole purpose of an insomnia watch to begin with.)

So I did the only sensible thing: I bought myself an early birthday present. I’m investing in an Apple watch which will be here in a day or so. I considered the Apple version when I got the Sense and decided that it was more than I wanted to spend. Plus I was replacing an earlier version of the Fitbit that I really liked, so it seemed logical to stay with the brand. It turned out that I wasted $$$ on the Sense that wound up aggravating me on a daily basis.

I had a lot of fun going through all the Apple watch models and options and colors, but I’m a basic black kind of girl so I went pretty tailored. I can always swap out the band or put some color onto the display if I get bored. It cost more than I’d like (but what doesn’t these days), but I have a lot more confidence in the performance of this device than the old one. Not sure what I’ll do with the old Sense when it comes back from warranty but I’ll figure that out.

I hope that if you’re losing sleep, it’s for a good cause. Thanks for checking in.

When you don’t want the answer

Tags

joint replacement, RA, TMJ

So I’ve completed my third visit in search of answers for my TMJ situation. While I’ve had TMJ issues my entire life, they haven’t really bothered me. I’ve always been able to “unlock” my jaw when it went out — until about six weeks ago. At that point my jaw got stuck to where it only opens about 60 percent. Nothing to this point has been able to “unstick” it.

I’d put off seeing this particular specialist because he doesn’t take my insurance and TMJ solutions are expensive even for providers who are in network. However, after meeting with him (and having my third set of 3D X-rays taken), I finally have confidence that I’ve found someone who understands the situation and has the answer.

Except I don’t want the answer. I want a magic solution. Or even someone to come by with a good right hook and sock my jaw into place (or submission).

The answer is total replacement of both jaw joints. I’ve included a picture of what the prothesis looks like. There’s a piece that screws into the skull between the cheekbone and the ear and a second piece that replaces the end of the jaw bone and screwed in along the jaw. I didn’t include pictures of what the surgery scars look like. I’d basically look like I had my throat cut from ear-to-ear and have slash marks in front of both ears.

Heaven knows I’m not afraid of surgery. I’ve already had five joint replacements and two separate spinal fusions as well as a raft of soft-tissue surgeries. But I really, really don’t want this. I think part of it is that I’ve already been through so much that thinking about facing yet another massive surgery it just more than I can stand.

It happens at some point where you question whether the cure is worse that the disease. And “worse” can mean anything from side effects to emptying the bank accounts to pay for it. In my case, my jaw doesn’t hurt most of the time. I just can’t open it very wide. So yawning and even eating something like a sandwich are both pretty much impossible and ARE painful. There may very well be a point where things get painful enough (or simply inconvenient enough) that things rebalance in favor of doing the surgery.

But that day is not today.

In the meantime, the doctor recommended (and I agreed) that some physical therapy might help. He recommended a great therapist who specializes in this area and speaks to medical audiences regularly on PT for TMJ issues. That being said, we know the joint has arthritis and has degenerated. So while PT might help the immediate problem, it’s inevitable that I’m going to wind up in the same situation again in the future. The joints just can’t work like they are supposed to. Even so, the therapist can’t see me for almost another month so I’m in limbo until then.

Sigh.

So many people have such worse problems than I do I feel a bit self-involved even discussing this. This may be the universe’s way of telling me I really shouldn’t be eating double-stacked bacon cheeseburgers anyway. (I really don’t but I do enjoy the occasional NYC bagel.)

I hope that you don’t have any problems but, if you do, I hope they all have easy answers. Thanks for checking in.

Is beauty skin deep?

In the search for a treatment for my TMJ issues, I’ve had some 3-D X-rays taken. These are not only of my teeth/jaw area but of my entire head. It’s weird seeing your skull. What do you think? Change my profile picture to this?

Actually SEE patients?

I’m all for telehealth visits. It’s been a lifeline during the pandemic and is truly convenient for those who have issues traveling to a doctor’s office. But at some point, doctors actually need to see patients. Hands-on, physical exams provide a depth of information that a virtual visit simply cannot. And while you might be able to put your swollen joint, rash, etc. up to the camera, it’s impossible for the doctor to closely examine your eyes, skin or other parts of your body.

Photo by Karolina Grabowska on Pexels.com

(Can you tell I’m perturbed?)

Last November I had a TIA (also known as a mini-stroke). It took me several weeks to even get an appointment with a neurologist and then it was a televisit due to the pandemic restrictions. During that call, we scheduled an in-person follow-up for June. Today the office called to change the in-person visit to a virtual one.

I’ve been doing fine since that one incident, but there comes a time when a neurologist needs to check your reflexes, examine your eye functions and check for other signs that a patient might miss. You simply cannot do that over a camera.

I’ve had other in-person visits with my PCP, my ortho surgeon, my dentist to name a few. However, there is still a cadre of providers staying hands-off.

I hope telehealth visits remain mainstream, but at some point (hopefully soon) doctors need to start seeing patients in person – or at least offer the option.

I hope that you, and your virtual self, are doing well and keeping safe. Thanks for checking in.

Winter storm, TMJ and RA

You may have seen the news that we had a major winter storm in Texas in mid-February. I was lucky in that I lost power for a few days (I camped out in a warm hotel room), but was otherwise unscathed. Literally thousands of Texans had devastating damage and many of these people are still dealing with the aftermath. One such person is my dentist.

It turns out that my dental checkup was originally scheduled for a day or so after the winter storm was supposed to hit. Knowing the roads would still be in bad shape, I had called and left a message that I would reschedule once things thawed out. When I called back, it turns out the dental practice is going to be closed indefinitely. The pipes had frozen in the office (which is in a standalone building). The frozen pipes burst and when they thawed, they caused a flooded office. The flood caused an electrical short. The electrical short caused a fire and the building basically burned to the ground. More than a month later they’re still in discussions with the insurance company with no idea of when they might get to rebuild.

I had planned to talk with my dentist about TMJ issues. I’ve had TMJ problems as long as I can remember. My jaw regularly popped and clicked whenever I ate and three or four times a year would get “locked” where I had problems opening my mouth. I’ve always been able to pop it back in place and go on with life. At the first of the year, this was happening more often and by the first of March, it was almost a daily occurrence. On March 17, my TMJ locked and I haven’t been able to get it to release.

Not everyone realizes that RA will attack any joint it chooses, including the TMJ. (A search of rheumatoidarthritis.net will bring up some excellent articles on the subject.) There are several things that can cause TMJ issues. Teeth alignment/bite is probably the most common. For people with RA, the joint and/or cartilage can also be damaged to the point the TMJ can no longer function properly.

After nearly a week of limited function and range of motion, I called my dentist. I won’t bore you with the details but it was several days of tracking down alternate resources and other referrals. Finally, my original dentist called me back and told me they had found a temporary dental clinic where they could see patients on an emergency basis and they gave me an appointment for today (two weeks after my jaw had locked up).

We don’t know anything yet. I’m in a temporary bite alignment splint to see if that will relax the jaw enough that the joint will realign. I talked to my dentist about my other joint issues (specifically the five that have been replaced) and explained that I was concerned the TMJ was also going to be a victim of RA. So I was sent to yet another dental facility and had 3-D X-rays of my head to see if we can determine the status of the joint. I go back to see my dentist in a week.

The other thing is that the TMJ falls in this weird alternate universe that is neither covered by dental or medical insurance. Each kind of insurance classifies it as the other kind of problem and won’t cover it. The only thing that is potentially possible is that if I have to have surgery (to basically replace the joint), it may be covered by insurance (if I can find a qualified surgeon who takes Medicare …).

It’s been a bit more than a year since I had my second hip replaced. Since my diagnosis, it seems like every year to 18 months, I’m having another surgery to repair/replace a joint. I am hopeful my TMJ isn’t the next one in line.

I hope that everything is aligning in your life. Thanks for checking in.

Vaccination Complete

Yesterday my husband and I received our second #Moderna vax, right on schedule four weeks after we got our first round. Other than a sore arm for me, we’ve not (yet) had any adverse side effects. The cosmic coincidence that we got our injections on the day that Texas “opened 100%” and lifted all COVID/mask restrictions isn’t lost on me. It will be two weeks before we’re considered “fully vaccinated” meaning we’ve had time to form the required antibodies.

I don’t necessarily feel safer, but I’m a lot less stressed. Since we registered (in multiple places) it seems it was a daily ritual to check the news to see how many doses were coming in, checking to see if there were other places to register, wondering when we would get an appointment. After the first shot, it was a worry if we would get a second appointment within the four-week interval, if Dallas County/City injection locations would shift, if the process we went through last time would change this time, etc. (Okay, I’ll admit I’m a class-A control freak.) All those questions/stress/concerns are now behind me.

In other news, Texas just opened vaccination appointments up for people 50+. I’m not only glad we’re expanding the opportunity, I’m glad that I don’t have to compete for appointment times with that much larger group of people. Our median age in the county is about 33 years, so we’re still working on the top half. (Note, in the graphic below, blue represents male and red represents female, so we are nearly equally split in all age groups.)

I hope that you are, and will continue to stay, safe. Thanks for checking in.

Finally – Help for Fatigue

Tags

Simponi Aria

For many RA and PsA patients (myself included) fatigue is a major complaint. I know that one of the first signs that a treatment plan was not working as well as it had been previously was the onset of worsening fatigue. Unfortunately, since you can’t measure fatigue with a lab test, doctors and other healthcare workers might note it on a chart but otherwise may be uncertain how to address this debilitating symptom. Fatigue, like pain, is often viewed as simply a patient’s opinion rather than a clinical finding.

FINALLY, the FDA has approved a label change for one of the prominent RA/PsA medications to include treatment for fatigue. Simponi Aria, an infused TNF-inhibitor manufactured by @Janssen achieved this approval on February 25. This not only recognizes fatigue as a valid manifestation of the disease, it actually approves a treatment for it. I have personal experience with Simponia Aria and can attest to greatly improved fatigue symptoms. An article with more details can be found here: https://www.healio.com/news/rheumatology/20210225/fda-expands-simponi-aria-labeling-to-include-fatigue-in-ra-psa

When dealing with chronic diseases, breakthroughs like this that can really improve the quality of life truly provide hope and evidence that we are making progress in the battle. I’m delighted to share this information with you. Thanks for checking in.