Defining, Allocating, Uniting, Saving, Educating…… These are our February Chronic Illness prompts. Each month A Chronic Voice hosts many chronic illness bloggers on her site. We love sharing with each other and you, some of our thoughts about a life lived with a chronic illness.
January went by far too quickly. I honestly haven’t accomplished any of my new-year’s goals. That means in February I will give up. Oh, I’m just kidding. I can’t give up on things that will be good for me. I’ll actually just keep committed to my goals.
I hear a lot about being defined by my illness. All over the internet I see memes and quotes that say something like this: I won’t let my illness define me. I believe that I know what the intent of the message is, but I have issues with it. When they say this, they want to say that their life is much more than just the illness itself. It’s like saying that the label of the illness isn’t what they want people to think of when they see them.
That’s why when I go out I fix my hair and wear a little makeup. It’s why I try to smile whenever I can, or even laugh about my symptoms instead of moaning and groaning all the time. But, in reality, my illnesses do define me. Arthritis and Ehlers Danlos Syndrome define me because I can no longer do most of things I could do ten years ago. Back then, I was defined by my ability to play musical instruments. Now, I’m not able to. That changes how people think of me and how I think of myself.
That’s just one of the many things that now define me. We used to say that someone would need to reinvent themselves. That usually was meant to be a positive thing. I’m still trying to “reinvent myself” as a person with multiple chronic illnesses. As my list of diagnosis’s continues to grow, my definition of myself continues to change. But, as I delve deeper into who I am I know that my soul stays the same.
Thankfully, my spirit is secure and content because of my relationship with Christ. Even though my physical body continues to falter, I know that I’m loved and sustained by God.
February is the month I have allocated a ton of my time to therapy for the Cutaneous T-Cell Lymphoma. The phototherapy clinic has set aside appointments for me. I will go every Monday, Wednesday, and Friday for treatments. The time on the road will add up to 6 hours each week. Because of dizziness that can appear suddenly, my husband will be driving me. So, he’s now tied up for many hours per week.
Uniting is a big word this year. Many people are hoping to see the uniting of our country. That would be an awesome thing, if people could put the good of the country first. But, that’s not probably going to happen.
Uniting those of us with chronic illness is one of the best reasons to use the internet. Blogs, social media, and forums are so helpful. We can all unite in our common interests. We all want to have the best life possible with our chronic illness. We can often learn great coping mechanisms, new therapies, or find great specialists by conversing online.
I’ve learned so much just by reading what has helped someone else. I enjoy the unity that I find on many online groups. When people come to forums and leave their sensitivity at home, a lot of good things can happen. Uniting works better when we care about what happens to others and not just ourselves.
I know what I’m not saving……money. My medical care expenses are out of control! I’m going to a doctor who doesn’t take insurance. So far, he’s the only doctor who has actually helped me since I got sick. I’ve considered going back to a doctor who takes my insurance, but my husband agrees that we need to try and keep paying for this doctor.
All the expenses for private doctors, more expensive health insurance, driving a long way to get care, and all the extra supplements and drugs just keep going higher in price. And, with the outrageous price of organic meat, our grocery bill is through the roof!
I do try to stop making any unnecessary purchases, but it doesn’t balance the extra medical expenditures. It’s really expensive being sick.
Spreading information and sharing knowledge is something that I’m committed to doing this year. I hope to share many awareness days, new research articles, and disease advocacy posts. I absolutely love doing research. Spending hours trying to read and understand research articles helps me to see connections.
If I only had one disease, life would be so much easier. And, so many of my disorders have symptoms that overlap. Some treatment options that help one of my diseases is bad for another one. I have a hard time keeping up with them all. I have to advocate for myself with doctors.
I can remember so many times when a doctor will prescribe something that I later find out is bad for one of my diseases. I’ve even been given a drug that has a major contradiction with another one I’m taking. I’m constantly having to double check and read all I can. I take medications for: pain, osteoporosis, fibromyalgia, Sjogren’s Syndrome, Small Fiber Neuropathy, Allergies, GERD, LBBB, and more.
It looks like I need to keep educating myself as long as I have a mind to do so. Hopefully, there will be new and better treatments to find out about over the years. Having a chronic illness means that I need to be a lifelong learner.
@2021, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.