I have been feeling frustrated because all the pain medications I’m taking make it difficult for me to function normally.
The part of my life that I miss most is being creative. My mind is blocked in a way that it never has been before and there are moments when I feel cut off from who I used to be.
It has become a necessary part of my life. The pain specialists make sure I’m getting the right level of medications for pain management. They assess my condition to determine what procedures might help to reduce my pain. They are really good at communicating technical details in a way that’s easy to understand and setting my expectations. Most importantly, they quieted the doubters (the insurance company, my family doctor/primary care physician, and other specialists) who questioned, for different reasons, why and how it was possible that I could be in so much pain based on my initial misdiagnosis and even now with what my surgeon identified.
Having pain specialists as part of the team of doctors treating me has also become important to my friends and family. They are more comfortable with my treatment plan now that I have this extra level of care. When my pain spikes to unbearable levels my friends and family ask if I should call the pain specialists to have my pain medications adjusted. They ask when my next appointment at the pain clinic is scheduled if they think I need support. And they ask if the pain specialists agree with my surgeon’s opinions about how to move forward with treating my condition.
At Friday’s appointment I saw the doctor I met during my first visit last summer– I like her a lot. She adjusted my medications to help with my night time pain and the high blood pressure I now have because of my pain. Then she talked to me about the procedure I have scheduled for later this week. This procedure will help my surgeon determine if the only surgery known to be able to correct the condition I have might help or hurt me further because my illness is rare, but my case is more complicated than most documented cases.
The doctor outlined the possible outcomes for the procedure and she set my expectations. I could end up having a major pain flare up after the procedure and it may take weeks to see any positive results– if any at all. If my pain is not relieved then the surgical option will be taken off the table because the anticipated outcomes for my post-operative quality of life are very poor. The upside if this procedure fails is that the pain clinic may be able to provide some minimally invasive treatments to help me cope better long-term.
My situation may not be ideal, but I feel very fortunate to have access to this clinic and such a caring team of doctors.
Today I leave you with Joan Armatrading singing about physical pain of a very different nature than mine.
It’s been very hard spending so much time alone while being so severely ill.
I’ve known since I was very young that I think a lot. Actually, some would say that I think too much. I might be inclined to agree.
My thoughts have become very circular in some difficult moments: is my illness a boomerang of bad karmic energy that I deserve as payment for something terrible I did in the past; how much longer can I possibly live like this; what if the doctors can’t “fix me”; and how can I possibly continue to do this alone?
These thoughts take me dangerously close to the edges of a rat hole I know it’s possible for me to fall into under the right circumstances. I have to work hard to keep my mental health healthy and some days I just barely come out on top. Some days it feels like it would be easier to give in, but the choice I make instead is to not fight against my thoughts and feelings so hard because it adds to my physical pain and causes me additional psychological and emotional pain.
I’m trying, instead of thinking so much, to accept this challenging experience for what it is. At the very least, I don’t blame myself for being sick anymore. At the beginning of all this, as irrational as I knew it was, I tried to figure out what I could have done to avoid getting sick. Even after I learned that my illness most likely resulted from a rare congenital condition that could never be prevented. I try not to wish my illness and the accompanying excruciating pain away because it requires a significant investment of my energy. Energy that I need to function at the most basic level some days. I also try not to blame anyone else– not even the doctors who misdiagnosed me at the start of all this.
Hardest of all, I try to be present with the pain. Being present means: noticing how the pain is changing my body and my mind; moving my body in ways that don’t aggravate my pain– not always successfully; and moving slowly, carefully and deliberately in every physical action I make so I don’t drop things or drop myself– again. It also means I try not to feel guilt when after doing very little I’m so exhausted I need to nap in the middle of the morning, afternoon and/or evening– like I did for about three hours in the middle of writing this entry.
The final thing is something I’ve always done but I work at even harder now. I work at being grateful for the people who love and support me. One of the ways I do it may not, at first glance, seem like gratitude but I work at allowing them to help me because I’ve never been good at asking for or accepting help. And I need help now like never before– even if I can’t always admit to it. But I can admit that each time I reach out to someone I can feel a shift in myself and I feel a little less alone.
Today I leave you with some thoughts from the Queen of Soul, Aretha Franklin – Think [1968]
My Small Surrenders 