Wednesday, October 30, 2019

The unpredictable nature of psoriatic arthritis

Hello friends! I wanted to provide a little update to let you know how my time away from work is going.

There have been a few really good days. So good, in fact, that I couldn't help but wonder why I needed this time off work. Sadly, there were only a few of these days. Most of what I have experienced have been moderate days. These are the days that I have pain, but that I realize that my time away from work allows me the opportunity to do physical therapy, cook nutritious, healing foods and focus on my health. And then, there are the days like I had yesterday: high pain days.

Fortunately, these high pain days aren't every day. These are the days when I get nothing done at home. Days like this, I find that it's sometimes difficult to get myself around to get to the kitchen or bathroom. I cry because I rely so heavily on Nora and Scott, and then I feel guilty. On these days, Scott cooks (after a full day at work) and brings my dinner to me. Nora keeps my water bottle full. Molly, the dog, waits patiently for someone else to come home and take her for a walk. Days like this suck. Days like this make my weekly visit to my mental therapist an absolute necessity.

Ultimately, what these days remind me of is the unpredictable nature of psoriatic arthritis. I have to remember to enjoy the good days and take care of myself on the bad days. More updates to come!

Thursday, October 24, 2019

Saying goodbye to a friend

Photo credit: Mike Durbin

This most is a little more like a journal entry than a blog post. I just needed to post some of my few memories about my friend who lost her battle with multiple myeloma yesterday, but on her own terms.

These last couple of days have been surprisingly emotional for me. I had the privilege of attending HealtheVoices19 in Dallas, TX earlier this year. At this conference, I learned more about health advocacy and had a chance to meet other health advocates. This conference was one of those rare opportunities to bond with other attendees very quickly and on a much deeper level than at other conferences.

On my first day there, I specifically remember meeting a beautiful lady with short gray hair. Cherie was very quick to correct me when I assumed that gray was her natural hair color. She said it in such a matter of fact way that I couldn’t possibly be offended.

Throughout the weekend, I talked to her a few times. We didn’t necessarily talk about our advocacy work, but just about the conference and the fact that we have children of the same age.
Saturday night was open mic night and she stood up to speak. She was reading a poem written by her youngest. Much of this was about how Cherie’s journey with cancer, specifically multiple myeloma, had affected their relationship. While Cherie had been in remission for some time, she let us know that just the week before attending HealtheVoices19, her cancer had returned. If you told me that there was a dry eye in that room when she was standing on stage, I wouldn’t believe it.

After we all went our separate ways, we got in touch with each other on Facebook. Although we all have different chronic conditions, we follow each other’s journeys. Since this conference, I no longer simply follow those with the conditions that I have because I see that we all have very similar paths.
Cherie’s prognosis was not good. She did not have long to live. She opted to move to Colorado where Death with Dignity was an option for her. Cherie didn’t want to die a slow, painful death, but instead to make the choice for herself.

Her family and friends posted a video on Facebook on that last day of her life. It felt like an honor to have been able to watch this video and participate in those last moments of her life. I watched her daughter and son hold her hands and cry. I cried with them.

It was hard for me to sleep last night. I kept thinking about how hard it must have been to take that medication that ended her life. She knew well what was happening and wasn’t afraid of it. As Cherie always said, “it was all about love, anyway.”

I told Cherie several times in the last few weeks that I will never forget her. She took charge of her health. She made the decisions. I’m so proud to have known her.

Thursday, October 17, 2019

How I became my own mentor

Sometimes I forget the importance of self care. Recently, I told my therapist that I was considering taking on a couple of mentees through the National Psoriasis Foundation. I enjoy volunteer work as a mentor to people who need to talk about their concerns with psoriatic disease. Plus, as I mentioned to my therapist, I wanted to do something worthwhile during my leave from work.

She stopped me there. Didn't I realize that taking this medical leave was worthwhile? Didn't I understand that I was busy taking care of myself? Nope. That never even occurred to me. She suggested that I take on one mentee, but she would choose that person for me. Guess who it was? Me.

I left that appointment with a fancy new journal. My assignment was to write to myself about the struggles that I have, particularly with regard to my psoriatic arthritis and my medical leave. Later, when I felt motivated to wear the mentor hat, I would answer those letters.

During my work as a mentor, I've worked with people who are amazing! I've become friends with some and have even met one in real life. I've also had people who are struggling so much that I didn't feel capable of mentoring them. But I've never had a challenge like the one I provided to myself! When I read the first message from my "new mentee", I was shocked! "This chick is crazy!" I thought to myself.  Still, I answered with the same thoughtful care and compassion I would have if it were a stranger I was writing to.

After a couple of entries, I was feeling so much more optimistic. I was reminded that I know what to do and what I need. My advice to myself was exactly what I needed. This project allowed me the opportunity to be a bit more insightful about my needs. When other people tell me that it's okay to rest, I sometimes don't believe them. It doesn't always feel like it's okay. But, when I tell myself that it's okay to rest, I now believe it. 

At this point, I'm going to wait before I take on any new mentees. I have my hands full with the one I have! 

Sunday, October 13, 2019

Slow down does not mean stop

Taking a time out is not as easy as one might expect. When I discovered that I would need a break from work to take care of my health, I assumed that meant scheduling one healthy activity after the next. I envisioned a big weekly schedule of events that would fully account for my time off to ensure that there was not one wasted moment.

The reality was that I was drained and didn't feel like doing much of anything. When I talked with my therapist about my need to feel that I was getting something accomplished, she reminded me that I was getting something accomplished. Rest. That's the thing my body needs most.

Pain, whether chronic or acute, takes a lot out of you. It's exhausting. I'm accustomed to the fatigue of psoriatic arthritis, but any overuse of my back causes more discomfort as a form of tired that I've never experienced. There are no words that I can find to describe what I feel when I reach this point. I've been trying to describe it and officially give up. :)

The key reason I'm not able to work now is this horrible pain in my low back but the psoriatic arthritis and emotional distress only amplify this need. Still, doing nothing isn't realistic. And, that wouldn't be what I need. Physical therapy is my primary activity and I love to spend time in the pool. That's the one place that I can take a real break. There is no pain in the pool and I can appreciate this opportunity to feel normal. I've got doctors appointments and a weekly session with my therapist. But, this schedule does not create a fully satisfying lifestyle.

Scott and I had tickets to see Aladdin The Musical Friday night. It occurred to us on Friday afternoon that I may not be able to comfortably sit in our center orchestra seats, so I called the venue to ask about handicap seating. They generously provided us with seats in the back of the orchestra level that would allow me to stand, as needed. These seats also had a bit more support than the other seats, so it was a much better option for us.

When I have walked too much (which is sadly not that much walking) I find that my leg will sometimes want to buckle. My back won't allow me to continue walking. Since the performing arts center we visited on Friday night is large, I knew it would be difficult to walk. I had to swallow my pride and use a cane for support.

Yes, I have to slow down and take care of my health. But, that doesn't mean stop. It just means that I need to find a healthy balance. How do you find that healthy balance when  you're struggling with a disability? Here are some ways that I have found:

  • Ask for accommodations. If there is something that you really want to do but you worry that it's too much, try some creative thinking. Just like switching my seats for Aladdin, it might just be a matter of asking.
  • Get the tools you need. I sometimes enjoy cooking, but standing in the kitchen can be very difficult for me, at this point. Rather than give it up entirely, I try to find simple, easy to cook recipes. Amazon was also a life saver! I ordered kitchen mats that make it more comfortable to stand and they arrived in just one day.
  • Find fun new hobbies. After my knee replacement surgery a couple of years ago, I started a cross stitch project that I never finished. I decided to start on that again. I've also found more time for reading. 
  • Don't isolate yourself. I'm a very social person and, if I allow myself to become too isolated from my friends, I can get very down. This disability can be very embarrassing for me. It's hard to let people see me walk with such a severe limp or using a cane. There are so many times that I have to cancel because I just am not up to it. But, I still have to allow myself time with others. Invite friends over. Spend time with people who you can be yourself around. They will understand if you're not able to go run a marathon with them!
  • Be flexible. We had a family game night that started around the kitchen table. It wasn't long before my chair was causing a lot of pain for me, so we moved into the living room where I could get comfy in my recliner. I'm a creature of habit and believe that games should be played around a table, so this was not super easy for me. But, this is the way I was able to keep enjoying the night with my family.
  • Take care of yourself. If your body tells you to rest, do it. You don't have to keep going. Order take out and relax.

How do you find a healthy balance? Please share your ideas. I'd love to be able to use them for myself!

Wednesday, October 2, 2019

I'm going to give self care a try

I've done the scariest thing I think I've ever done. For the first time during my 28-year history of psoriatic arthritis, I have time time away from work to take care of myself. This is terrifying! I have gone to work during the very worst times I could imagine. During the days that I couldn't step off or onto a curb unassisted, I still went to work. No matter what crazy things my body throws at me, I just keep on going. Taking time off had never even occurred to me. Until it did.

As you know, I recently found out that what I thought was hip pain turned out to be spinal degeneration. Now that I'm on medication for the nerve pain and some of the leg pain has subsided, I can absolutely feel that it is in my low back. It's still so difficult to sit or stand in one position for any length of time, but at least I'm getting a little more sleep than I was a couple of weeks ago.

My first thought when I found out about the severity of my spinal degeneration is that I would have to leave work permanently. After conversations with my many providers, I realized that long-term disability is not my only option. It's not even my best option because I really want to work. It's something that I enjoy. It never occurred to me that a few months away from my job to heal would be my best option. It gives me an opportunity to practice some self-care and a chance to rehab.

Self-care is somewhat lacking in my life. Sure, I do things that make me feel good sometimes, but many of those luxuries have been given up in this most recent arthritis flare. I don't remember the last time I did yoga, outside of goat yoga. (And let's face it, I mostly just snuggled with goats then!) Nora and I had a little spa day a few months ago, before our vacation, but I haven't had a massage since. Pretty much, I've spent my recent time laying around on the couch watching Dr. Phil. So, I'm gearing up for this time off with big plans. I'll have appointments with my general practitioner, rheumatologist, orthopedic, physical therapist, psychiatrist and therapist, but I want (or need) to do some other things just because they make me feel good. Here are things that come to mind to try.

1. Massage
2. Swimming
3. Float tank (Who has tried this? I can't wait!)
4. Mani/pedi
5. Meditation (Any recommendations on how to start a practice?)

Please tell me what else you do because this is all I can come up with. Surely there are other things I can do for myself. What do you do?

The next 3 months will be a new experience for me, but I am convinced that I will return to work better and stronger for having taken the break. I hope that this will help me avoid surgery and avoid an early retirement. I'm getting ready to battle psoriatic disease and I intend to win!

Psoriasis and Tattoos

Before I got my first tattoo, I went online, frantically looking for someone to tell me that it was okay for me to go okay - I would be fine...