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On May 5th, 2006, my amazing team at Boston Children’s Hospital removed the tumor that was trying to kill me and saved my left leg from reconstruction. This last week, I celebrated 10 years being officially tumor free! It’s still so crazy to me that 10 years has past by since I was diagnosed with pediatric cancer, half the time it still seems like yesterday that I was in the hospital dealing with vicious rounds of chemo and the other half of the time, it seems like a far off nightmare.
It’s a huge relief to be so far out from my cancer, but the truth is, my life never went back to “normal.” The combination of chemotherapy and cancer can cause a lot of complicated side effects (emotionally and physically) on the body that lasts well after the last cancer cell has been vanquished. My immune system is shot, I deal with fatigue and exhaustion on a daily basis and I struggle with PTSD and anxiety as a result of my treatment. And, on top of the total left knee replacement and donor bone in my left leg, I developed a pretty intense case of arthritis and tendonitis in my left hip from walking “funny” for the last 10 years.
I know I’ve shared here before how discouraging life can be for me at times with these kinds of complications hanging over me 10 years later. I want nothing more to move on from that dark time in my life and to greet my future facing forward. It’s really hard to do that, though, when I am reminded of what happened to me with every step I take. Although my knee replacement has given me so much of my life back from my first surgery, my joint pain has gotten increasingly worse in the last 10 years. It’s so frustrating at times to be 26 years old and to be trapped in a body that aches all of the time. It’s frustrating to have to weigh the risks of every physical activity and decide whether I’m capable of handling the pain during and the pain after. It makes me angry that I’m a 10-year cancer survivor and that people don’t understand why I still deal with pain or have to say no to certain activities to protect my leg. And while I am incredibly thankful to have my life and to have two legs, it’s definitely been an ongoing journey to find peace with the way my body works now.
Part of my healing process has been to find ways to take back what my cancer and arthritis has taken from me. May is National Arthritis Month and I am one of 53 Million Americans who are affected by Arthritis! Sometimes, that involves a bit of creative thinking and adaptation, but with the help of my husband, family, and my trusty Advil (nothing’s proven stronger on Arthritis and other joint pain among OTC pain relievers,) I’ve been able to find ways to take back pieces of my life!
Swimming is actually one of the best forms of exercising for people with joint pain because it has no impact on the joints. I love swimming but used to be so self-conscious about going to the pool because of my scars. Strangers used to point out my leg to me (as if I didn’t know that it was deformed) and make silly comments like “did a bear get you?” I used to respond back snappily “No, but cancer almost did” just to get them to shut up and leave me alone, but that didn’t make me feel any better.
Taking back swimming has been one of my biggest accomplishments because swimming really does help me strengthen my muscles without causing too much irritation in my hips. Over the last year (and with great thanks to this blog) I’ve been able to find a lot of peace with my leg and learn to be proud of my scars instead of ashamed of them. I have also learned that people asking about my scars can be a great opportunity to spread awareness for pediatric cancer and to teach others about it!
I can’t run for long distances or even very short ones, but after my knee replacement, I made it a goal to be able TO run, even if it was just a short sprint. After lots of physical therapy and taking Advil to counter any swelling or pain, I was able to jog one lap around the track a couple months ago!
I do have to adjust how I jog in order to keep the pain at bay. It’s more of a power walk and I concentrate on rolling my heels so that way I’m not pounding down on my joints. But hey, if I had to run for my life, I think I could and that’s all that matters!
Riding a Bike
Arthritis tends to put a damper on bike rides because of the constant use of my joints to push the pedals. I actually stopped riding a bike for a few years because I simply couldn’t handle the pain. It was pretty discouraging because I used to ride my bike all of the time and because bike riding is also a great rehab for my left knee!
Last summer, however, Dustin bought me a new bike and promised me that he would help me take back bike riding from my joint pain! We started small by just riding my bike around the block. After a couple weeks (and using Advil to help counteract any joint pain) we were
Sleeping on my Side
For the longest time, I wasn’t able to sleep on my left side because of the pain in my hip! It was so frustrating to me because I’m a side/belly sleeper and my pain would wake me up in the middle of the night!
Now, I have a trusty system in place that has allowed me to take back sleeping on my side! On rough pain days, I end my night by first soaking in a warm bath to relax my muscles. Then, I use an essential oil rub on my hip and knee that creates a tingly relaxation sensation in the deep tissues. Because I took a hot bath before, my pores are open and this allows the lotion to penetrate even deeper. I sleep with a memory foam pillow in between my legs to alleviate any pressure on my hip joints and take Advil to help the pain stay away once I fall asleep.
Before my knee replacement surgery, I had to take the stairs one at a time like a two-year-old because my knee simply wasn’t strong enough to push me up the stairs. Even after the replacement, it was still hard for me to want to go up and down the stairs because I knew it would cause a lot of pain and discomfort.
Thankfully, I’ve been able to really strengthen my knee muscles in the last year and on days I know I’m doing a lot of walking and stairs, I can premedicated with Advil to help alleviate any pain! Hooray for being able to not be so anxious about stairs anymore!
Taking Rosie for a Walk
Rosie has been instrumental in helping me become more active despite my chronic joint pain. She needs to be taken out to go play, for walks and for adventures! I want the best for my pup, so I refuse to let my knee and joint pain keep me down from getting her out!
I used to use my joint pain as an excuse for not exercising and would just sit around and watch TV instead of being active. I had a hash reality check last summer when I visited my orthopedic surgeon, who told me that I needed to loose a couple pounds in order to help my knee replacement last as long as possible! So, I knew I needed to stop saying no to excersise and start saying yes so that I could take care of my body!
I’ve started with low impact exercises, such as stretching and yoga. Now, I’m working on lifting weights and strengthening my core. There are plenty of exercises that I can do that don’t impact my knee or hip joints while helping me stay fit and active, but my three favorites are as follows:
- Laying on my back, sticking my legs straight up in the air and swinging them from side to side in windsheild washer motions. This works the lower core and strengthens the back!
- Laying on my side and lifting my leg straight in the air (10 reps on each side.) This helps strengthen my hip flexors
- Holding a weight in both of my hands, holding it straight up above me and then bending my arms and lowering it behind my head (20 reps.) This helps strengthen my shoulders and arms with no impact to my painful joints!
And, on days when I might over do it, I know I can pop some Advil to help me manage any pain!
I know that it sounds like I take Advil A LOT. I only take it on my worst days, but it’s nice to know that I can rely on Advil to help me reduce my pain and function somewhat normally again. Advil just came out with a new bottle design with an EZ open cap that is perfect for people struggling with Arthritis (or people like me who just can’t open regular caps.) I found this new bottle design on an endcap in the pharmacy section of my local Walmart!
Do you suffer from joint pain or rely on Advil to help you out? I’d love to hear your tricks to managing chronic pain!