Our family experiences with our chronic illnesses - tips, stories and lessons learned
Wednesday, September 30, 2020
How do you sleep when you have chronic pain?
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:
- Colace
- Senecot
- Miralax
- Prunes
- Apple Juice
- Other foods high in fiber
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
Friday, September 18, 2020
Finding purpose when you have a disability
Here we go again! When I filed for social security disability, it was recommended to me that I not blog. In fact, it was recommended that I have no public social media at all. The thought is that if I'm getting out of bed in the morning, I must not be disabled. Anyone who has been in touch with me for the past year knows that this couldn't be farther from the truth.
I'm here at home today, recovering from wrist fusion surgery on a dreary day, feeling sorry for myself. I'm feeling that there is nothing that I can go out and do without pain, both from my surgery and my arthritis. I have family occasions to look forward to, but how much fun will they be if I hurt to much to join in family reindeer games (my husband's family is big on the reindeer games!) and I don't want to be the person there who can't do the thing that everyone else is doing. It would be great to get together with my friends, but I can't drive now and, if I could, would I be able to be comfortable? In my mind, they would have more fun if I wasn't there.
I know that there are some people who see my time off of work at a vacation. It't not. I am constantly working to try to make my pain feel better or get my mental health under better control. It's a constant battle. Today, what I realize that I need is a sense of purpose. That's what work gave me. I am good at my job and know that I made a valuable contribution.
So, I'm going to blog again. It's a reasonably short time commitment. I'm currently typing with my right arm in a full splint, so it's taken a long time. For some reason, every time I want to type an apostrophe with this big hand, a semi-colon happens instead. Every. Single. Time. This isn;t (see...I am gonna leave that one so you can see that it's true) easy for me, but if I can reach someone who is going through the same thing, I will have a purpose.
I'm curious to hear from other folks with similar struggles. How do you find your purpose? Tell me in the comments or send me a DM.
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...


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