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I keep thinking I’ll find time to do a post on all of my latest adventures but the Updatecalendar keeps ticking by, so I thought I’d just do some quick updates.

  • I told people that when I “retired” I was going to learn how to use Twitter, call the dishwasher repair guy and finish my second book. I haven’t done any of the above. As the great American humorist, Erma Bombeck, often said, “Life is what’s happening as you make other plans.”
  • Two weeks ago (the first Monday of my retirement), I had my first Actemra infusion. I’ve been on the self-injectable version but it wasn’t quite doing the job. I’d feel better for a couple of days, then it would wear off. My rheumatologist suggested that we switch to the infusion because she can adjust the dosage. This in lieu of changing drugs yet again. The only biologic that I haven’t been on is Rituxan. If I also “fail” on that, I am out of biologic options. So far, I haven’t had good results after the infusion. We started on the lowest dose and it hasn’t seemed to helped at all. Fortunately since I’m not working full time I can take it a bit easier.
  • I am also thinking that I will discuss with her adding back in another DMARD, perhaps going back to methotrexate which I hate because of the brain fog. Although now that I’m not working, I will be better equipped to deal with that situation.
  • Per my earlier posts, my liver enzymes have been elevated. As I expect that we will increase the Actema and that will probably cause even more issues, I went to see my gastroenterologist to see what might be done to help support my poor, overworked liver. I really love this guy and his realistic approach to medicine and after some discussion, he recommended that we do a liver biopsy. He said that the best thing we could do is rule out there is any disease causing the elevated liver enzymes. In my particular case (and I would surmise in many RA patients as well), autoimmune hepatitis can’t be discounted without the test. Once we do the biopsy and rule out liver disease, then my rheumatologist can increase the RA meds. Even though my liver enzymes might be “high”, the “safe” range is expanded. The liver biopsy (which doesn’t sound very pleasant as you are awake when they do it), is scheduled for about 10 days from now — right before my next infusion.
  • Scheduling the biopsy procedure was greatly complicated by my current insurance situation. At the end of November I changed from my company paying the group insurance to COBRA where I pay the premium, which I did right before Thanksgiving. Unfortunately due to the holiday, the premium was showing paid on the COBRA site but on the eligibility part of the system, it showed my coverage ended on November 30 and so therefore they wouldn’t verify benefits for a procedure being scheduled in December. Didn’t matter that they could check and that I paid the premium, without their computer system having that checkmark, nothing was going to happen. I spent hours on the phone on November 30 to no avail. Patience actually paid off. The very next day, on December 1, everything had percolated through the system and I was shown as having coverage through December 31. That’s the good news. The bad news is that my COBRA coverage is changing plans effective January 1 and I have to be enrolled and pay the COBRA premium on a new plan which then has to percolate through the system before I can verify coverage for January. Sheesh.
  • While I have coverage and fully paid deductibles, I had made an appointment with my ortho surgeon to order some physical therapy for my (replaced) left knee. In the meantime, I have developed severe pain in my left heel. Consulting Drs. Google, WebMD, and MayoClinic.com, the symptoms are consistent with bursitis of the Achilles tendon, but unfortunately also with a torn Achilles tendon. The bursitis is easy. The torn tendon is not. If that’s what it is, it could require surgery and will require 12 to 16 weeks in a cast. I find out tomorrow what’s going on there.
  • In the meantime, I have filed a disability claim with my former employer’s disability insurance plan (to which I had paid in more than $1,000 in premiums this year) as I retired because I am no longer able to work full time. That was almost three weeks ago and I’ve yet to get a determination. They keep asking for further information from my doctors and I can see a long, drawn-out process where they deny and I appeal. In the meantime, I have no income coming in past my final employment check. It’s very frustrating.
  • That being said, I do have retirement savings and I have a meeting next week with my tax attorney to figure out which (very small) pile of money I should start tapping first. There are trade offs between tax consequences vs. growth and I’m smart enough to know that while I could probably figure it out, I’m better off asking for help from someone who does this for a living.
  • Thanksgiving was good, quiet, fun. My husband and I went to our neighbors for Thanksgiving lunch. She made most of the meal. I made my world-famous chorizo cornbread stuffing and a vat of my sinful gravy. So much for my diet.
  • But, because of my Saxenda prescription, I’ve been eating less and have lost about 7.5 lbs in the past month. I had started back to working out in the pool, but due to the pain issues in my heel have postponed any more workouts until I see my ortho doctor. I’ll do the physical therapy for my knee (if he prescribes it) at the same hospital facility where the pool is, so I am hopeful that will keep encouraging me to work out. Assuming I’m not in a cast.
  • I am now 19 days and counting before I can quit wearing my brace which supports my recuperation from spinal fusion therapy. Being free of this encumbrance will be a terrific Christmas present.

I think that brings you up to date. Everyone has been asking me how I’m enjoying my leisure time and, frankly, I’m not sure how to answer that question because I really haven’t had any leisure time to evaluate. I have been able to take one or two afternoon naps over the last couple of weeks and just knowing that’s an option is wonderful.

I hope that whatever updates are happening in your life are blessed and reflect the wonderful holiday season we’re entering. Thanks for checking in.

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