My “Insomnia Watch” Broke

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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

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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.

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

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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.

Warnings for Xeljanz

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There is so much else to grab your attention these days it might have been easy to miss the FDA’s recent safety warnings for Pfizer’s JAK inhibitor, Xeljanz, which has been approved for RA patients as well as psoriatic arthritis and ulcerative colitis. These warnings apparently apply to the higher dose of 10 mg/day which, according to the safety trial, showed an increased risk for cardiovascular events and cancer. The safety trial applied specifically to Xeljanz produced by Pfizer. The other main JAK inhibitor on the market is Rinvoq produced by Abbvie, but I haven’t seen any related information for it. I suspect that the Xeljanz situation may raise the scrutiny on Rinvoq. A search already shows class-action lawyers lining up to sign up patients.

A good summary of the situation can be found here: https://www.pmlive.com/pharma_news/fda_considers_new_safety_warnings_for_pfizers_jak_inhibitor_xeljanz_1362988

This is tough news for patients for many reasons.

First of all, of course, are the safety concerns. Taking any kind of advanced treatment such as JAK inhibitors or biologics raises the stakes for increased side effects and safety issues. It especially raises concerns for patients who have been on the medication for a time.

Second, is that it will no doubt impact the use of JAK inhibitors to treat a range of debilitating diseases. This removes a powerful weapon in the fight against RA, PsA and UC.

Third, JAK inhibitors are taken by mouth — they don’t require injection or infusion. This is a much easier treatment option that removes barriers to treatment for those patients who have issues with injected or infused biologics.

The good news is that this kind of safety evaluation does happen and raises appropriate concerns. The bad news is these types of findings tend to make people even more cautious about undertaking other kinds of treatments.

The final determination is not yet in from the FDA. It may be that the lower dose may continue to be used or that the medication might preclude certain classes of patients (e.g., those who are older or have existing conditions).

Update 2/14/2021: A couple of updates, and I’m quoting an article from Medpage Today here. (1) The warnings apply to both the lower and higher doses of Xeljanz. (2) There is no determination yet, awaiting full data analysis, “but the FDA is not yet prepared to take action, which could include ordering new label language, requiring a risk evaluation and mitigation strategy (REMS), or even pulling the drug from the market.” The FDA has encouraged patients who are on the drug to stay on the drug and/or discuss with their doctor. Here’s the link to the article: https://www.medpagetoday.com/rheumatology/generalrheumatology/91051?xid=nl_mpt_SR_specialty_update_2021-02-14&eun=g1030170d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=SpecialtyUpdate_Rheum_021421_%7BOpt:0060z0000244tvpAAA%7D&utm_term=NL_Spec_Rheumatology_Update_Active_US%20only

I will update further as I see additional news.

Today’s Word – “Enough”

As a communicator I’m fascinated by both languages and words. Today I’m veering off my normal medical topics to focus on something more linguistic.

The man had a lean, rangy, hard-scrabble look about him. His pressed jeans and starched shirt made me think he haled from west Texas or perhaps Oklahoma. Certainly somewhere west, and hot, and dusty. Based on his age, I guessed he’d been born to Depression Era parents and probably served in WWII and perhaps even Korea. We were at one of those open-air things where food vendors circulated with bite-sized samples of their wares. When offered one, I heard the man reply, “Thank you, but I’ve had enough to eat today.”

I thought to myself that the man probably hadn’t had enough of anything except hard work his entire life. But I understood what he was saying. I was mainly raised by a single mom and, on more than one occasion, had been told that I’d had enough to eat, even though my stomach thought to argue otherwise.

All this ruminating made me think about the word “enough”.

For such a small word, it creates a clear, powerful dividing line between need and want. You might have enough food to eat, money to pay the rent, time to get to where you’re going, data to make a decision, but that doesn’t mean you don’t want more. Maybe a little buffer. Perhaps a little extra to make sure you’re not hungry, broke, late, wrong. But there is no buffer in “enough.” “Enough” is a true measure; there is no extra. No Lagniappe as they say in New Orleans. “Enough” is sufficient upon to itself.

So how do we know when enough is really enough? As the quote from Atticus goes, “Just enough crazy to make her interesting.” Beyond that, it becomes “more than enough.” Sometimes it’s hard to tell when the “enough point” has been reached, but I guarantee we all know when we don’t have enough.

Beyond dividing “need” and “want,” the word “enough” also serves as a tipping point. It’s that moment when it becomes clear that something different needs to be done. A change must be made. People will change jobs, homes, spouses, nearly any aspect of their lives when they’ve “had enough.” Interestingly, I think there is a lot of medical advice sought at the “enough” point. There comes a time when a person will decide they’ve had enough dealing with pain or other symptoms that it warrants seeing a doctor.

I’ve always thought of “enough” as an almost invisible word. One of those fillers in a sentence that take up the space between the first capital letter and the final period. It is unassuming. It’s an introvert. It certainly doesn’t have the panache of its synonyms such as “watershed moment.” “Enough” doesn’t seem important enough,  dramatic enough, or intense enough to carry the weight of transformative events. (See what I did there?)

Like many introverts I know, though, “enough” carries tremendous meaning and does so concisely.

I hope you have enough of not only what you need, but also what you want. Thank you for checking in.

Further COVID-19 Vax Info

If you’re not aware of Creaky Joints, they’re one of my go-to places for trustworthy information on RA. They have an entire section about living with RA and dealing with the pandemic, including the most current info on the vaccines and a wealth of resources to answer questions and provide support. Link is below.

On a personal front, like many places, the demand in Dallas for the vaccine is outpacing the supply and there isn’t a lot of organization. We have a “provider map” for Texas that lists the places you can get the vaccine and how many doses of which vaccine(s) they’ve received. While neither my PCP or rheumatologist have received a supply, I was pleased that my local pharmacy has started receiving some of the Moderna vaccine. While I will get the vaccine, right now, I’m committed to staying put until things settle down. I’m not willing to go to the County Health Office, and the private suppliers are getting wiped out quickly. If you’re interested, I’ve put the link to the Texas availability map below as well.

I am hoping that you and yours continue to stay safe and healthy. Thanks for checking in.

https://creakyjoints.org/category/living-with-arthritis/coronavirus/

https://txdshs.maps.arcgis.com/apps/webappviewer/index.html?id=91ac7fb5e5fd47e7ada4acfe4a05920a