30 things for 2015
Although I have been diagnosed with several invisible illnesses, this year I decided to focus my 30 Things meme on just the most recent diagnosis. It’s the one that’s had the greatest impact on my daily life so far this year. The stairs are my worst enemy and the pain can limit my mobility to the point that I can barely walk at all. I’m not always symptomatic and sometimes the symptoms are not obvious enough to be noticed by others. Visible or invisible, the disease is always present.
- The illness I live with is Tricompartmental Degenerative Arthrosis & Chondromalacia, better known by its common name, osteoarthritis. The damage is confined to my right knee, with damage to the patellar cartilage as well as to the knee joint.
- I was diagnosed this year when right knee pain persisted after a lengthy recovery from pneumonia
- Symptoms just started in May when I tried to resume my usual exercise routine after recovering from pneumonia.
- The biggest adjustment I’ve had to make is learning to change my body mechanics so I don’t put undue stress on the joint.
- Most people assume I am too young for osteoarthritis.
- The hardest part about mornings is fighting the urge to avoid activity. I need to keep the joint moving to control the pain. After a long night, my knee is usually stiff and sore. It can take a few hours for the pain to subside.
- My favorite medical TV show is Grimm. I prefer getting lost in fantasy fiction rather than focus on medical themes. I get enough of that in real life.
- A gadget I couldn’t live without is my laptop. When I had problems with it this summer, my whole world stopped until I got it fixed. It is my lifeline to the rest of the world and the medium I use as a creative outlet.
- The hardest part about nights is waking up after only a few hours of sleep and not being able to get back to sleep. I’m usually kept awake by medication-induced heartburn.
- Each day I take 14 pills & vitamins. That’s a lot less than I used to take. Only two of those actually help the osteoarthritis.
- Regarding alternative treatments, I do use a combination of Glucosamine, Chrondroitin, and Turmeric in addition to medical treatment for osteoarthritis.
- If I had to choose between an invisible or visible illness, I’m not sure which I would pick. At times osteoarthritis is a visible illness because I do use a knee brace and cane when the pain is especially bad. However, thanks to cortisone injections, I have long periods of good symptom control. No one would ever know that I am living on borrowed time. It’s only a matter of time before I will have to have an artificial knee replacement.
- Regarding working and career, there is no way I could do my former job with my knee in such bad shape. It’s really a blessing that I was already disabled by other conditions when the symptoms first appeared.
- People would be surprised to know that there are days when I can barely walk due to the pain.
- The hardest thing to accept about my new reality is that it’s not going to get better. This isn’t something that can be reversed. Eventually I will have to have knee replacement surgery.
- Something I never thought I could do with my illness that I did was to travel by air alone.
- The commercials about my illness show senior citizens and make it sound like just taking a pill will stop the pain. Yet my orthopedist has instructed me to avoid taking pain medicines whenever possible. He says that gentle, low impact movement is the best way to slow the progression of this disease. Pills just mask the pain and increase the chance that I will stress the join and damage it faster.
- Something I really miss doing since I was diagnosed is playing “horse” with my 16 month old granddaughter. It took her several months to realize she couldn’t climb on my leg and bounce anymore. We’ve had to find new ways to have fun.
- It was really hard to accept that I need a cane sometimes. I really fought the idea for a long time.
- A new hobby I have taken up since my diagnosis is coloring. I’ve started collecting and decorating adult coloring books. It takes my mind off the pain and gives me something to do when my mobility is limited.
- If I could have one day of feeling normal again I would walk to the park with my granddaughter.
- My illness has taught me that you can feel invisible even when your illness is visible.
- Want to know a secret? One thing people say that gets under my skin is, “But you’re so young!” First, I look a lot younger than I really am. And second, osteoarthritis happens because the joint is worn out, not because of age.
- But I love it when people slow down so I can comfortably keep up.
- My favorite motto, scripture, quote that gets me through tough times…it’s so hard to choose just one! I guess right now I’d have to say that “Every storm runs out of rain.” is one that reminds me that nothing lasts forever.
- When someone is diagnosed I’d like to tell them to completely explain to their doctor how the pain impacts their daily activities. Even if the x-ray doesn’t show any problems, push for an MRI. My joint deterioration never showed up on the x-ray. It took an MRI to properly diagnose the problem. I was then able to receive the appropriate cortisone injections to manage the pain.
- Something that has surprised me about living with this illness is how intense arthritis pain can be. It’s the same intensity as the pain of a bad migraine attack.
- The nicest thing someone did for me when I wasn’t feeling well was when a store clerk noticed my cane and offered to get me a motorized cart.
- I’m involved with Invisible Illness Week to give others hope that they can live well even with an invisible illness.
- The fact that you read this list makes me feel grateful that you took the time to learn more about life with osteoarthritis.
Tammy Rome
Migraine was ruining my life. It stole countless important moments. Migraine even stole my career. I was desperate for relief and almost gave up. Yet there was this small spark of stubbornness that refused to give up. Determined to find solutions, I took charge of my treatment. Now I control migraine. It does not control me. I even got my career back! Now, I'm dedicated to helping others discover a life of peaceful coexistence with migraine and headache and empowering them to embrace joy and a sense of purpose.