For the Last Time …

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I was musing today, wondering if I’d dare to go on another cruise or even sit in another crowded movie theater. I was reminded of this post I wrote some time ago. In today’s uncertain environment, I think this post is even more valid than when I first wrote it. Enjoy.

When we’re growing up, we look forward to those fabulous “firsts” — the first grade, the first date, the first kiss — all kinds of new adventures.

As we move forward as adults, we start noticing the “lasts”. Some of these are intentional. A few years ago after spending a soggy week in Orlando with two 12-year-old girls, I looked my [now ex-] husband squarely in the eye and stated quite clearly that I had visited my last amusement park.

Some of these “lasts” are good things, like when you finally figure out it’s the last time you ever want to drink too much and pray to the porcelain god all night.

There are also some “nevers”. You know, those things on your bucket list that you’ll probably never do. I’ll never take up sky diving. I haven’t given up on learning to fly a helicopter or how to speak Spanish, but with each year that passes, those things inch closer to that “never” column.

But what I’ve come to realize lately, is that there are “lasts” that sneak by you and don’t realize it until it’s too late.  There ought to be signs or trumpets or announcements that, “Hey, this is the last time you’re going to get to do this, so pay attention and enjoy it.” Like having dinner at a restaurant only to have it close shortly thereafter. Heck, if you’d known it was going to close, you might have foregone the diet and enjoyed the world-famous dessert one last time.

I’ve had a pretty significant “last” come to my attention. And it’s something that I thought I’d do again, but I’ve come to the realization that I was wrong. It’s sad when that happens, when a chapter closes in your life.

With RA, some of those chapters close sooner than they should, and you get to enjoy firsts that you’d rather not: first dose of Methotrexate, first time to use a cane, first time you really can’t get out of bed.

The good thing about it is, there are still unread chapters in my book (and yours), adventures to be had, firsts (and repeats) that I really enjoy.

Thanks for checking in.

What July Means to Me and RA

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I was diagnosed with RA 12 years ago in July. That was the bad news.

The really good, wonderful, amazing news is that seven years ago this month, I became a contributor for rheumatoidarthritis.net. The site, along with several others dedicated to chronic diseases, is the brain child of the incredible folks at Health Union. Along with great resources, they truly bring the patients’ voices forward. Anyone with a chronic disease will tell you that connecting with other people who have experience with what you’re dealing with is invaluable. Through this association, I have connected with so many strong, resilient, passionate and, yes, funny patient advocates.

Health Union has honored me with a profile on their site. Here’s the link: https://rheumatoidarthritis.net/spotlight/interview-carla-kienast/

Thanks for checking in.

Any club that would have me …

Groucho Marx is credited with saying that he didn’t want to be a member of any club that would have him. That is, if the bar was set that low, he didn’t want to be associated with it.

That’s hardly the case for me. I once again find my blog listed on Healthline’s Best Rheumatoid Arthritis blogs. I couldn’t be more privileged to be included in this amazing group of terrific patient advocates. Here’s the link so you can check them out yourselves. The Best Rheumatoid Arthritis Blogs of 2020

Thank you Healthline!

Conscientiously objecting

I feel like I’ve badly neglected my poor blog. There are good excuses for that, but they’re just that — excuses. The main one being the virus that seems to have brought our entire planet to a standstill. Excuses aside, I thought I might give you a quick update. I think it mirrors what a lot of us are going through at the moment.

I recently had two follow-up telehealth visits with interesting results. One was on Zoom and the other was via a real telehealth site with all the medical disclaimers. It’s apparent that everyone, including our doctors, are making this up as we go. One appointment was with my rheumatologist (more about that in a later post) and one was the followup for my hip replacement surgery. Both doctors were generally pleased, as I am.

So what’s the deal?

My rheumatologist wants me to have my three-month labs done and my orthopedic surgeon wants me to come in for the 90-day X-rays on my hip.

Uh, no.

The lab I use is in a large hospital complex (where my doctors are) and it’s one of the national labs doing a substantial amount of COVID19 testing. Even if I used one of their satellite locations (not in the hospital), they’re still doing the virus testing. My doctor recommended waiting until sometime in May, but it still makes me nervous. Ditto the hip X-ray. My doctor has his own X-ray department, but he’s located in the hospital complex. This hospital complex was ground zero for the Ebola outbreak a few years ago and is a major site for COVID19 treatment. I told them I might be in sometime in May or June (when I get my labs done so I only have to make one stop). I’ve also just postponed my dental and dermatology appointments that were scheduled for mid-May.

I’ve always tried to be a good patient, but at this point, the risks outweigh the benefits. I had great lab results in January and I’m having no issues whatsoever with my new hip. I just see no compelling reason to rush into what could be a smoldering cauldron of virus particles.

I’ve seen other friends post about going in for their infusions. THAT makes sense. My situation, not so much. For now I’m staying put.

Hope that you’re staying put and staying healthy. Thanks for checking in.

8 Weeks and Counting

So it’s been eight weeks since hip replacement surgery and I’m doing great. I don’t even think about the fact I had surgery except when I (try to) sleep on that side at night or when I try to tie my shoe. Since I wasn’t even walking very well before the surgery (using a wheelchair about half the time even around the house), I’m just totally grateful for the amazing results and that I had the surgery before the #Covid-19 hit and all elective surgeries went on hold.

Life here in Dallas has been interesting. Like others we’ve faced tightened restrictions almost on a daily basis and the grocery stores have large swaths of empty shelves. At midnight tonight, Dallas County has upped its game and issued a “Shelter in Place” order, which means basically everything shuts down except grocery stores, pharmacies, and essential services. My husband has started working from home. (I figure they won’t find his body until after the isolation period ends …)

At least the weather here is (finally) going to be sunny and warm and, now that my hip is doing so well, I can get out and start walking again.

So many of us are at high risk due to our immune systems. Please be careful. Please avoid those jerks who aren’t following guidelines. (I understand that there are some idiots that actually sneeze/cough in the direction of older people.) Take care of yourself and connect whenever you can.

Thanks for checking in.

Survey Help, Please

You may have already seen this from other blogs but, if not, I encourage you to participate. It concerns the use of Hydroxychloroquine (e.g., Plaquenil) to treat RA or Lupus. I’ve pasted the request below.

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This is a SurveyMonkeys link:
https://www.surveymonkey.com/r/RHLVY6W
Help the world to fight Coronavirus!

Do you use Plaquenil, Aralan or chloroquine ?
A common drug, called Plaquenil, has been shown by scientists to block the coronavirus in test tubes.
Many people worldwide use this drug, or its generic Hydroxychloroquine (HCQ),  to treat lupus erythematosus or rheumatoid arthritis.
Other people use a similar drug (Aralen), chloroquine, for malaria or Amebiasis.
I work at the  University of Ferrara (Italy). Like many other nations in the world we are now hit hard by coronavirus. The hospitals are more and more stressed by the ever increasing number of patients. The pandemic is now expanding worldwide. Large scale studies for the efficacy of this drug against Coronavirus are not yet available.
Even if you are not using any of these drugs, you can be part of the solution!
Simply answer 3 questions and help to stop this deadly disease, called COVID-19!

Many thanks!

The opposite of whining

So what’s the opposite of whining? Is it un-whining or anti-whining or reverse/inverse whining? Whatever it is, that’s what I’m doing. After what seems like an endless stream of feel-sorry-for-me posts, I’m glad to be reporting good news. Not only NOT whining, but actually sharing some good news. I’ve had at least one medical appointment every day this week, so I’ve got lots of positive check marks.

  • I guess the main thing is recovery from hip replacement. I’m doing great. It’s not quite four weeks since the surgery and I’m driving, walking without a cane, running errands, cooking, etc. My main problem is that I tend to overdo (because I forget that I’m recovering from surgery) then wind up tired and sore at the end of the day. My follow-up appointment with the surgeon couldn’t have been better. My last home care physical therapy visit was three days ago and my doctor is even letting me forego outpatient physical therapy since I’m up and active, although he’s given me the option of adding it in later if I decide I need it. He previously replaced my other hip and a knee so he trusts me to manage my recovery well. So, yay! for that.
  • I also had my annual follow-up for my two shoulder replacements this week. Everything is looking great there and I’ve been released to five-year maintenance follow-ups. No appointments there until 2025!
  • My mammogram results (you can skip this part if you want …). Had my mammogram on Wednesday and the follow-up with the doc on Friday. We’ve been following a cyst on the left side for a few years now — even aspirated it once. I actually thought it was gone because I couldn’t feel it any more. However, it’s still there. The good news is that it’s still just a cyst — hasn’t decided to morph into anything worrisome and it is actually slightly smaller. So while I still have to have ultrasound with my mammogram and 3-D tomography, I only have to go in on an annual basis instead of every six months.
  • I guess the only fly in the ointment is that the pathology report on the hip didn’t show any evidence of RA. My rheumatologist and I were hoping that the report would provide some evidence of what is going on with me. Even though I’ve been on aggressive treatment since diagnosis (biologics +/- DMARDs), I’ve had five joints replaced and two spinal fusions — all while my labs come back completely normal. I’m not sure what to do and I’m not sure that she knows either.

So, overall doing really well. I have no doubt that all the support and love that you all have shared over these last few weeks has been a huge contributor to that. Thank you for that and thank you for checking in.

 

 

Recovering well

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So it’s been just over a week since my anterior hip replacement surgery and, while I expected to do well after surgery, even I am impressed with how well things are going.

Surgery was on Monday morning and I was discharged about noon on Tuesday. Anterior hip replacement, which is much less invasive than the older method used on my other hip, is considered “outpatient” and thus the quick discharge. My right/first hip was replaced about 11 years ago and I have about a 12-inch scar on the outside of my hip (20+ staples to close the incision). This surgery, done from the front (or anterior) has left me with about a six-inch scar on the front of my leg, starting about the panty line. The leg muscles are moved out of the way — not cut, so everything is much more stable afterward. They even have a really cool surgical bed for the procedure. Your feet are put into boots and then moved around as needed for surgery.

They had me up and walking soon after surgery (with the help of a walker). Pain management was done with oral oxycodone and Tylenol, but there was actually very little pain. (The doctor injects pain medication into the surgical site, so that helps.) I’ve taken one oxy the day I got home from the hospital and done well on just Tylenol since then.

I got home Tuesday and home physical therapy started on Wednesday. I’m getting around with just my cane, although for short trips in the house, I’ve started leaving the cane behind and just walking on my own. Next week I finish in-home therapy and will switch to outpatient. Which is fine, except that I have to figure out how to get across town for my appointments. Technically, my doctor’s orders say I can drive at this point, but I haven’t tried it yet. Getting in and out of the car (which I’ve done once since surgery) isn’t the most comfortable thing I can do. Luckily, it’s my left leg, not my right/driving one.

There are a few things that are a bit of a challenge such as getting in bed, some parts of getting showered and dressed, etc. The main thing is just getting my energy back. I do pretty well when I get up, but it doesn’t take much for me to run out of steam.

I’ve often said that it’s not the big things in life, it’s the little things, and this situation is no different. The big things — surgery and recovery so far — are good. But, for example, they stuck me more than 15 times over a four-hour period starting at 1:00 am to get labs so they could discharge me. They couldn’t discharge me without the labs so I didn’t have a choice. The lab techs and floor nurses all tried. Then they called in the team from the ER and then the team from the ICU, then a second team from the ICU after shift change. In the midst of all that, my IV blew and I wouldn’t let them start another one. I told them if they couldn’t find a vein to draw blood, I sure wasn’t going to let them find a vein to hold an IV. One guy from the ICU actually listened to me when I told him of an earlier horror story where they used a vein in my foot, and that’s where he finally was able to draw blood. I actually have more bruises from the blood draw than I do the surgery.

But I’m doing great. My husband stayed home with me the first week. He went back to work this past Monday but I had a girlfriend come hang out. We actually went out at lunch and grabbed a sandwich — the first time I’d been out since surgery. I have the PT guy three days this week and my cleaning lady today, so I really don’t have much of a chance to lay around and be lazy.

My rheumatologist asked for the pathology report from my hip. We’re still searching for answers on what actually is going on with me. It’s hard to diagnose when my labs always come back normal. We’re hoping that the actual joint will yield some clues. After that, I have my surgeon follow-up on 2/20, so I’ll be posting updates as things progress.

I’m blessed to have so much love and support from family, friends, neighbors, and my RA peeps. It truly does make a world of difference knowing that there are people out there who care if you’re doing well. And I am — both blessed and doing well. Thank you so much — and thanks for checking in.

… 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.