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!

Sunday, September 22, 2019

Psoriatic Arthritis Setback

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What a week it has been! I went to the orthopedic surgeon on Thursday because of pretty severe hip pain. In my mind, the surgeon would give me a cortisone injection in the hip, send me to PT and tell me to come back in three months. In three months, they would then recommend hip replacement. Boy, was I wrong! 

As it turns out, the pain stems from my low back. After nearly three decades of arthritis, it should have come as no surprise to me when she said, “extensive degeneration” in my spine. That degeneration is pinching nerves and that’s what’s causing my hip and leg pain. She also told me I have scoliosis and showed me a very curved spine. Since I was visiting the knee and hip team, I had to get on the schedule of the spine team. In the meantime, I got a prescription for Gabapentin and PT. I see the new doc in 4 weeks where, if I’m not experiencing noticeable improvement, I will need an MRI and then, potentially, a steroid via epidural.

When I was in the doctor’s office, I was so glad to have scheduled my appointment with my surgeon’s compassionate PA. While my surgeon is very skilled and did a fantastic job on my knee replacement, he’s not known for his bedside manner. The PA answered all of my questions and didn’t flinch by my tears.

When I left the office, I completely fell apart. All I could think about is how far I’ve come since I started having symptoms of psoriatic arthritis. That was 28 years ago and I remember the pain like it was yesterday. I remember how hopeless and uncertain I felt then. That’s how I felt on Thursday.
Way back in my first signs of psoriatic arthritis (PsA), I couldn’t imagine how I would get up and go to work day after day. It never occurred to me that at 50+ years old I would still be able to work. But here I am! On Thursday, I wondered if this was the beginning of the end. It was a hard day for me. So, I did what I do. I jumped into action. I scheduled four weeks’ worth of PT at a local wellness center where I will be able to use the therapy pool. I scheduled a immediate appointment with my mental health therapist for that very afternoon. She helped me find a lot of clarity about my strength and perseverance and when I left her office, I felt much more hopeful.

Setbacks happen. PsA is a difficult disease to manage. For days, months or years, you might feel fine. And then one day you wake up and remember how bad this disease can make you feel. Know that this is normal. As many times as I’ve been through really bad times with PsA, my life is more good than bad. In fact, it’s pretty great. I’ve got an understanding family, caring friends and a job that allows me to use my skills to make a positive impact.

It might come as a surprise that I consider PsA one of the positive things in my life. After all, with this disease, I wouldn’t be the person I am today. I wouldn’t be as determined or as compassionate. I’ve met so many people I know through the chronic disease community as part of my patient advocacy. This disease has given me the opportunity to make a real impact on other people through my volunteer work.

Don’t give up on yourself. True, your life with psoriatic arthritis, or any other chronic disease, might not be what you expected. It’s the life you have now and it can be satisfying and fulfilling in spite of the struggles.

Wednesday, September 18, 2019

Not All Handicaps are Visible

Who among us has ever looked at a person getting out of a car in a handicap-accessible parking space and thought, “she doesn’t look disabled to me”? I will admit that sometimes that thought still runs through my head. I should know better – and I do. Let’s face it, it’s hard not to judge.

When I do start to feel a little judgy, I try to put myself in that person’s shoes. Maybe she feels okay at this very moment, but she knows that when she leaves the concert she’s at or when she walks out of the home goods store that she’s going to be in pain.
My rheumatologist is always very cautious when she provides a handicap placard. Ultimately, she wants her patients walking as much as possible. When I finally went into her office and told her about all the things that I don’t do because I’m afraid that it will be too painful for me, she immediately gave me what I needed to go to the DMV.

You may find it hard to believe, but I hate to use these special parking spaces. The intent behind them is to make life easier for those with a disability. Most of the time, I want to believe that there is someone out there who needs this more convenient parking space more than I do. But sometimes, the pain is too much for me. Or, the distance is so far that I know that I might be able to make it to the place that I’m going, but when I leave, I might not be able to make it back to my car. So, there are times that I use that parking space.

When you’re parking in these handicap-accessible spaces and you don’t have some sort of medical device such as a cane or a knee brace, people aren’t shy about looking at you with judgement in their eyes. Or, maybe I’m just being paranoid and making assumptions about what’s in their eyes. But probably not.

Able-bodied friends, please be patient with those of us who take advantage of accessible parking. Recognize that we’re likely embarrassed to be parking there. We want to be healthy enough to park where everyone else parks. This is not what we want, it’s what we need.

Sunday, September 15, 2019

Psoriatic arthritis pain described

What does psoriatic arthritis feel like? There isn’t really one answer for this question. It feels different depending on what’s going on. 

For example, I’ve had terrible hip pain the past couple of weeks. When I stand up from my chair at work or get out of bed in the morning, I struggle to walk. My hip is stiff and doesn’t feel like I can move it. As I start moving, it loosens up and movement becomes a bit easier. Each step hurts, but it’s bearable. With this type of pain, sleep is very difficult. I take a very low dose muscle relaxer to help ease me into sleep. Before I go to bed, I also use a CBD muscle balm that I bought while in Seattle. It’s the best!

In my opinion, pain in the larger joints like my hip feels more tolerable than pain in my hands or feet, or other small joints. I have arthritis in my toes, and when they start throbbing, I literally can’t even think. It’s hard to put a sentence together. My husband, Scott, will ask how I feel and it’s difficult to articulate my answer, so I usually say, “I’m okay.” Scott probably knows this, but I’m not okay when I say I’m okay. The pain is just too intense to describe. In those situations, I might use heat and/or ice, more of my magic muscle balm and often I will take two muscle relaxers before bed. I might even take a bath, though things have to be really bad to get me to this extreme. Remember that episode of Friends, The One Where Chandler Takes a Bath? Chandler says he doesn’t find baths relaxing because “You just sit in there stewing in your own filth.” I agree with Chandler, but sometimes I have no choice and I’m willing to go to this extreme.

When psoriatic arthritis first became part of my life, even before I had been diagnosed, my little finger was the target joint. It was so swollen and painful, and, during the night, the pain would wake me up. I always described this pain as feeling like someone was jamming an ice pick into my joint. So sorry for this shocking and graphic description, but that’s how it felt.

The moral of this story is that, even with psoriatic arthritis, no two pains are exactly the same. My pain over the past couple of weeks has been so intense that I have felt it necessary to apologize to my family for not being as involved as I feel I should. I forgot to make Nora’s lunch a couple of times. Scott has been trying to get our new home set up and get our boxes unpacked. And guess what I’ve been doing? I’ve been in bed or on the couch feeling guilty.

Tell me, what kind of pain is the most bothersome to you? Do you struggle with the feeling of irrational guilt?

Friday, September 13, 2019

If you're looking for perfection, you won't find it here.

I started this blog with high expectations of myself. I expected that I would be eager to write about my life a couple of times a week, and each post would represent the very best of myself. I would show everyone that it’s easy to live a full life with a chronic illness. Maybe that was unrealistic.

Life got the best of me. The summer of 2019 was filled with fun, but it was also filled with stress. My family went on a fantastic summer vacation; a cruise to Key West, Costa Maya and Cozumel. For the first time in my life, I snorkeled. It was amazing!!

The weekend after our family vacation, Nora and I went to Austin, TX for the OCD conference. I’ll tell you more about that later, but suffice it to say, this was not the best conference I’ve ever been to.

Less than a week later, I traveled to Germany for a patient speaking opportunity.

Here’s where things get crazy. Just days after returning from Germany, my family moved across town. Also, my office at work was moved during this time. So, while these were all good things, they were still stressful. And anybody who deals with an autoimmune disease knows what stress does to the body.

Oh…and did I mentioned that my arthritis medicine, Enbrel, failed during that time?

The joint pain that I’ve experienced over the past couple of months have rivaled what I felt at the very beginning of my experience. Fortunately, I’ve learned to hide it better than I did 28 years ago. But this post isn’t about how much pain I’m in. What I prefer to tell you about is how difficult it can be to share the hard times.

My hope with this blog was to show you my real life. But, when life I got hard, I stopped sharing it with you. It was hard to articulate what was going on when I just wanted to keep that to myself.

I’m going to do better to paint a more accurate picture of life with psoriatic disease. After all, that's what this blog is all about. If you're looking for perfection, you won't find it here.

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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 t...