Pen and Moon

from the writing nook of Theresa Jarosz Alberti

An Update, and Good News!

It’s been awhile since I did a health update. I get asked about my knees all the time when I run into people. Now I have some news, so it’s time to share.

The last posts had been on the procedures I had this last winter/spring. After months of pursuit, I finally had radiofrequency ablation done on each of my knees– a procedure where they insert three needles and burn out the nerve endings. It’s supposed to give pain relief, and for some people, it gives them a couple of years of increased mobility with a big decrease in pain. Unfortunately, for me it only gave me a little pain relief and no increase in mobility. For each procedure, I had to go through a whole painful pre-procedure to do a test of the needle locations. It was quite discouraging to not get better results from all of this.

My next plan was to go back to looking for a surgeon for knee replacement surgery. You may remember that a year ago I’d been rejected for surgery by a few surgeons because of my weight. While I understand they have concerns and that there are increased risks of infection with larger patients, I knew that I was a pretty good candidate for surgery anyway…

 

I exercise to the best of my ability, have been through multiple rounds of physical therapy, I weight lift to keep up my strength, I have a good immune system and am otherwise healthy. They of course wanted me to lose weight, but I am in an eating disorder program, I do not ever want bariatric surgery, and I am limited by pain in my efforts to be mobile and active. Also, as my dietitian tells me, chronic pain raises cortisol levels and stress, which make weight loss very difficult.

The Good News is that I went back to one of the surgeons at the University of Minnesota who had rejected me last year to see what he’d say now (he had left an opening for me to come back after I’d “worked on things” for awhile, a very vague statement). After he saw that my quality of life was much worse, my arthritic knees were in worse shape, that I’d been going to pain clinics and had a cane, had continued to exercise and do PT, he agreed to do surgery on me. Of course we talked about the risks: there is a 10-15% chance of infection or problems with wound healing with a heavier person, as compared to 1% in a regular-weight range. “But that’s still 85% chance of success,” I said. And of course,  new knees would have a great impact on the quality of my life.

Because in so many ways, the last year has sucked. I have had a whole education in Life with Chronic Pain and being handicapped. It’s something I’ve had to learn to live with, every hour of every day, varying degrees of pain and learning to manage things in my life to get by. Stairs– can I avoid them? Unfortunately, I often can’t (like in my home) so I steel myself against the crunching pain as I climb or descend. Sleeping or lying down doesn’t always help– pain and discomfort keep me tossing and turning.  I’ve been to three different pain clinics and tried many different medications, with different side effects. The ones I’m on now never quite leave me pain-free, but they do take the edge off.

I have a cane, but walking a block is just too painful most days. I am thankful for my handicap tag for parking. Things around the house like cooking or laundry are too much for me all at once. I sit down a lot and make decisions about what I realistically can and can’t do. And then, many days, I overdo it and pay the price. Bob has held me while I cried so often, frustrated or demoralized by what I can’t do or how hard things are.  He just got back from spending five weeks in Cyprus working on an archaeological project. At one point there had been talk of me going along for part of it, and yet, my pain and physical limitations made that impossible. I had a lot of grief over that.

And yet, I know that in the scheme of things, I have only had a brief taste of chronic pain and disability. I know plenty of people who have had to deal with all these things I’m talking about, or worse, for years or a lifetime. While that doesn’t diminish my own suffering, I’m acutely aware of the privileges of health that I’ve had, being able to walk around and do things with my body without thinking about it, with ease.

This last year has made me have so much more compassion and empathy for people living with pain and disability. I thought I had compassion before, but now it’s coming from a place of direct experience and deeper understanding.

[And I won’t go into it here, but this year has also been an education in how screwed up our health insurance system is here in this country. I made hundreds of phone calls, spent days making phone calls, trying to get the care I needed and trying to (and often failing to) understand the complicated, confusing rules of the system. Ugh. Another day for this topic!]

My first surgery is scheduled for just after Labor Day. I’ll be able to get the next knee done 2-3 months after that. It has really given me a lot of hope that my current situation will be better, and that makes it a little easier  to get through my days. My dream is to be able to go on walks again, be able to do more exercise without feeling great pain afterwards, to be able to do more things in my daily life, as well as travel again.

I know that having new knees (or Robot Legs, as Dante calls them) will help improve the quality of my life, but I’ll never forget the lessons and experiences I’ve had in the last year. I’m glad for the extra compassion and understanding I have for others who are dealing with physical challenges and pain, which are so often overlooked by our society.

Photos by me, David Monje and Fernanda Marin (courtesy of Unsplash).

14 Comments

  1. Nora Jane Krahn

    July 3, 2018 at 2:00 am

    Thank you for sharing this Theresa. You have been on a kind of marathon; trying all you could to get relief. So glad you have this hope to look forward to!

  2. Are you not able to get both knees done at the same time? That’s what I had done and I highly recommend it….The first few days are difficult, but every day is easier. And no second surgery to look forward to. My insurance would only let me have rehab in a hospital if I had both done at once, and I think that helped a lot, too…..Wishing you lots of luck whatever you choose!

    • Hi Kristi– getting both done at once was my original wish, after talking to others who’ve had it done. But the doctor is “concerned” enough about my weight that I didn’t want to push it. He did say I could get the other knee done in 2-3 months. I am going to make it my mission to prove to him that the surgery and recovery can go extremely well for someone of my size. I’m so glad you were able to get it done and that it turned out great!

  3. As you know, I really understand. Way to go and persevere. I am so happy for you. I know it will make a difference.

  4. Honey!!! I am beyond ecstatic that a doctor finally HEARD you and you are getting what you need!!! This is going to be a GAME CHANGER for you, I promise! Your new knee will be in very good shape by the time you do the next one – and your strong arms from weight-lifting will be your best friend. I’m thrilled beyond words!!!!

    • Thanks so much for all your support, Jen… I am SO looking forward to getting this going. I know you’ve had such great results with yours, just being able to live actively again. Looking forward to seeing you soon!

  5. I do hope all will be better than expected. Walking soothes the soul, especially in the natural world.

  6. Theresa, I’ve read about your journey and I really appreciate you sharing your struggle. Well done advocating for yourself. Well done making sure that you’re heard! Wishing you continued success and quick healing.

  7. Your determination and self-advocacy are impressive. So glad you are able to get this done and have great chances of improved quality of life. We are all rooting for you.

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