Monday, November 16, 2020

My PsA story: Accepting help is becoming easier




A couple of weeks ago, Psoriatic-Arthritis.com published an article that I wrote about accepting help. It's always been hard for me to accept help and even more difficult to ask for it.

After this article was published and my words were out there where everyone could see them, somehow it became easier to believe that people are sincere when they offer to help out. Almost two weeks ago, I woke up from what I thought was a crick in my neck. Instead of getting better each day, it progressively became worse. I reached a point where I couldn't move my neck at all. My ear has hurt so much from this neck pain that I haven't been able to wear my hearing aids. There is no position that I can find that brings me comfort. It's been a miserable couple of weeks.

Knowing that I have felt so miserable, several friends and family members have offered to bring meals or help with errands. My first instinct is still to say "no thanks" but I have stopped myself each time and told them how they could help. It's been nice to have visitors and great to have the help! Texts and well wishes from distant friends have made me feel special and loved, too.

If you need help, I urge you to let people help, especially when they offer. 

To learn more about psoriatic arthritis, check out Psoriatic-Arthritis.com and Psoriasis.org.




Thursday, October 15, 2020

Letter to my future self



Dear Future Self,

Is it okay that I start this letter by saying that I'm afraid to think about how you might be doing? I want to be kind and optimistic, but based on our history together, I'm scared for the condition that you might be in right now.

My mind is going all over the place, wondering what you're able to do,  Are you confined to a wheelchair or bedbound? I certainly hope not. Do your hands still work properly? Are you unhappy that I made the decision to have our right wrist fused to relieve some pain? I hope that hasn't caused you too much difficulty. It was an irreversible surgery and so drastic that I have been very afraid of regret. Everything that I have done has been for you, my future self.

How I hope that over the years, we have made progress with psoriatic disease. Wouldn't it be wonderful if joint damage could be reversed? What if there was a cure for this disease? Have you seen this? There are tears in my eyes just thinking about the possibility of a cure. 

If nothing else is possible, I hope that you're able to hold your grandchildren. I hope that this is comfortable and a place where you want to stay. I hope that you've been able to see hope for Nora's disease progression and know that she'll be okay and won't have the same struggles that we did.  When her children are born, I hope they never even hear the word psoriasis. I hope there is no need, except as a distant memory of a life that we once knew.

Dear self, I hope you've found peace with your life and your disease. You struggled so much when you were younger. The embarrassment of this disease can be overwhelming, but as you've aged, I hope that you no longer feel like a burden, or no longer feel ashamed if your skin makes people uncomfortable.

I hope you grow to be old and wise and have less pain than today.

Love,

Me

The idea of my future feels extremely overwhelming. I never thought that I'd make it as long as I have. I honestly believed that the chronic pain would have done me in years ago. But here I am!

Every day, I hope for a cure. I am not confident that I'll see it in my lifetime, but I think that Nora will. The best gift I could receive is the knowledge that her children would be born without any worries of psoriatic disease.

What would you say to your future self?

Wednesday, October 14, 2020

Letter to my younger self


Dear 20-year-old self,

You don't know this yet, but your time to do all the things that you might ever want to do is very limited. Go do them now!

One day, you'll wish you had taken this time to explore the world. Go out and travel! I know that money is tight. Be more responsible with it. Make better decisions so that you can go on amazing trips. Don't settle for Myrtle Beach when Paris is waiting for you. Would you rather go out and spend your money on food and drinks on the weekend or save it and go ziplining in Costa Rica? Just stop wasting your money on stupid stuff that you'll never remember the way that you would remember a tour of Istanbul.

You'll tell me that you don't have anyone to travel with. Go anyway! You're so outgoing that you'll make friends. Find a tour group. Just go. You're going to have plenty of time to sit around and wish you had done  more. Just go have fun. If you go out on your own, you won't have to worry about someone else's timetable. You'll be able to do whatever you want, when you want. Nobody will judge you. They will be envious that you had the courage to do it and wish that they were able to.

Julie, don't be so scared. Your life is going to change in ways that you can't even begin to imagine. Take these next three years and find excitement and joy. Step outside of your comfort zone. Challenge yourself to do things that scare you. 

When you start feeling those first pains of arthritis, please know that your life isn't over. The pain will be hard to get through, but you'll still have a really good life and you'll create happy memories.

Always remember to take advantage of your good days and have as much fun as you can.

Love,
Me

What would you say to your younger self?



Wednesday, September 30, 2020

How do you sleep when you have chronic pain?




Remember the days when you could just go to bed, put your head on your pillow and drift off to sleep. You'd wake up the next morning feeling refreshed and ready for the day? Me neither. Does that really happen? 

Even if it wasn't the best, sleep used to come much easier to me than it does now. I've tried almost everything. My doctor and I have tried to adjust my medications so that we can take full advantage of those that might be sleep-inducing. It turns out, those only make me sleepy if I take them during the day. I started showering at night instead of the morning. It was nice, but didn't do much for my sleep. My pillows seemed like they weren't cooperating with me, so I bought new ones, including lots of different support pillows in case I need to elevate part of my body. Finally, we took the plunge and bought a Sleep Number bed. It is great and I don't wake up with hip pain anymore, but still sometimes struggle to sleep.

When you have chronic pain, it's just not easy to sleep. My recent wrist surgery made it even more difficult. We had a big thunderstorm last night. I could feel it in my fingers and toes. It felt like I had burning lava in each of them and, at any moment, it was going to erupt. When my fingers and toes feel this way, it feels as though my skin might not be strong enough to stay in place.  My low back was on fire with tennis ball sized pain points shooting down my legs. On top of these symptoms, I could suddenly feel the titanium rod in my hand and just wished everything would settle down in my body.

Sleep is the thing that my body needs. It will help my wrist to heal. It will soothe my joints affected by psoriatic arthritis. Knowing this, I try harder to sleep. The harder I try, the more frustrated I get, until I finally decide to get up and see what's on tv. All I can find are clips of the presidential debate, and that is not relaxing, trying-to-get-some-sleep TV. When I finally go back to bed, I have a bit more success, though my bed tells me that my sleep wasn't very restful. (How cool is it that my bed can tell me this?)

So now, I'm still in pain today. I'm in this cycle and I know I'll need a nap today. I'll try to fight it so I can sleep tonight, but I'll probably give in. But sleep is what I need the most. 

I keep thinking about what I might do to resolve this sleep situation. It makes me think about who determined this sleep time that I'm imposing upon myself. If I can't sleep at night, should I stay in bed and try to force it, or just let sleep come where and when it is willing? I think I'm going to give option two a try.

Surely I'm not the only person with chronic pain who battles sleep. How do you sleep? Please share your secrets to a good night of sleep with me!!



Thursday, September 24, 2020

What to expect after surgery: Depression

Hello friends! In the last few weeks, I've answered so many questions about orthopedic surgery on Quora that people are specifically reaching out to me to answer their questions. (Sorry dude...I don't know when it's completely safe for you to smoke again after knee surgery, but I'm gonna say never.) As a frequent flyer in the orthopedic surgery center, I'm going to go ahead and proclaim myself an expert.

There are certain things that we all know that we should expect. We expect pain. We know that we'll need someone to help take care of us for at least the first day or two after surgery. But, the one post-surgical side effect that I always manage to forget about is depression. It happens every time, yet it's the one after effect that I put out of my mind.

I just had wrist fusion surgery on September 11 and all was going as well as I expected it to go. My arm was wrapped up, it was hard to shower and get dressed. I couldn't drive and, even if I could, where would I go? Plus, I'm in pain. I'm isolated, not really able to do much, having to count on my husband for many of my needs and exhausted. It stands to reason I wouldn't quite be myself. Plus, I've been taking pain medicine. I've been constipated. I already battle depression, so this is just amplifying an issue that already exists for me.

Finally, I opened to to my husband...really opened up. I told him that I was really feeling a lot of grief about my life not being exactly as I hoped it would be. I want to be able to be more active but find that so difficult. It sometimes feels that I have nothing to contribute to society anymore and that I have just given up. It felt good to tell him all of this, as hard as it was. 

I signed up for a pain and grief support group and then decided to start blogging again, since I feel that this is my contribution to society.  Then Scott made me go out for dinner. I didn't feel like it, but I was so glad I went. I really needed to get out of the house.

Here are a few recommendations for battling post surgical depression:

  • get dressed - that makes you feel normal again
  • get out of the house - go for a walk around the block, go for a ride with a friend
  • watch a funny tv show or movie - we've started watching Green Acres on Hulu and it always makes me laugh out loud
  • Talk with a friend - nothing makes me feel better than a chat with a friend. If you can't go to them, invite them to come to you, or call them

Surgery can be very jarring to the system. It makes sense that it leaves some emotional scars in its wake. Just remember why you had this surgery and take this opportunity to rest, recovery and take care of yourself.



Monday, September 21, 2020

Preparing for hand or wrist surgery

Every time I prepare for hand surgery, I go online to look for tips and am always surprised by how few I can find. Since I've now gone through several and am still in the recovery process of wrist fusion surgery, I decided that I should be the one to create the list of things everyone needs to know when preparing for hand or wrist surgery.


Before Surgery

Your surgeon has likely called in prescriptions for you. Don't forget to get those filled before surgery. Since this is a painful surgery, one of those prescriptions will likely be something for pain. The surgery staff will tell you to stay ahead of the the pain, but they probably won't tell you to stay ahead of the poop. When you're getting you're prescriptions filled, do yourself a favor and buy the following:

  1. Colace
  2. Senecot
  3. Miralax
  4. Prunes
  5. Apple Juice
  6. Other foods high in fiber
Do not wait until you're constipated before you start thinking about this. Get ahead of it. It is just as important as staying on top of the pain.

On the day of surgery, wear your comfiest clothes. My surgeon suggested elastic waist pants and a short-sleeve, button down top. Since this was not my first rodeo, I knew that I would likely be in these clothes for a couple of days, so I wore my pj's to the surgery center. Sure, I was the only person there in my pajamas, but they were super cute, comfortable and were exactly what the doctor called for. When you come home from the surgery center, you can just crawl right into bed without thinking about changing into something more comfortable.

Eating

Hopefully, you will have someone at home helping you. at least for the first few days. When they bring meals to you, ask them to bring you meals on plastic dishes. That will be lighter and easier for you to manage. If you're having surgery on your dominant hand, you may want to have your food cut into bite sized pieces for you. I also found it much easier to eat with a spoon rather than a fork. As much as I love sushi, I cannot use chopsticks with my left hand, so I make sushi a finger food now. 

For the bath

I have tried the fancy arm covers that you can get from Amazon and I find them so difficult to use that it's just not worth it to me. The best way that I have found to cover my dressing is with umbrella bags or bread bags. They are both very sturdy and usually a nice size to put over the arm. Tape it up and get in the shower. Just remember to hold your arm up so that water doesn't get into the bag.

I love using body wash and shower gel but post surgery, simplicity is key. I find that a bar of soap is easier to manage post surgery. Shampoo and conditioner is easiest to manage when you buy the bottles that come with a pump.

I also keep baby wipes so if I want a shower but don't really have the energy for a shower, I just have a little bird bath. I'm not going anywhere, so if I miss a day it's not a big deal. 

You'll want a good electric toothbrush if you're having surgery on your dominant hand, since surgery will make brushing your teeth very difficult. You'd be surprised by how hard it is to brush your teeth with the wrong hand.

Medicines

Since I have chronic health conditions, I have multiple medicines that I have to take daily.  I was surprised that I could open medications that were in child-proof containers, as long as they were in the regular sized bottles. Of course, I had to put the top of the bottle in my mouth and twisted with my left hand. I needed help opening the larger bottles. One of my prescriptions is dosed at 1.5 pills daily, and I can't break that pill in half, so my husband has to do that for me. 


Finally, I want to mention that it's taken me this long to remember that after every surgery I've had, I have a period of depression. I'm assuming that must be normal. I think part of it is the grief of psoriatic arthritis and the realization that my life won't be exactly like I planned it, but part of it must be from the isolation and the medication. Have you experienced that? I'll share my experience with this soon.

I'm sure that many of you have post surgical tips, so please share them in the comments. 


Saturday, September 19, 2020

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?

Psoriatic Arthritis Infographic










Follow by Email

My PsA story: Accepting help is becoming easier

A couple of weeks ago, Psoriatic-Arthritis.com published an article that I wrote about accepting help . It's always been hard for me to...