I confess...I am pondering emBODYment..and playing with words to make them work for me. This is really long...feel free to skip the update and go to the second section if you so desire...
I had a second round of diagnostic injections a couple weeks ago. The second doctor at the pain clinic had been on leave and I pretty much wanted to throw her a Welcome Back party when the appointment folks said she had returned. I knew it would be a better fit when she actually talked to me before the procedure and tried to make me feel less nervous. After being belittled for being scared the previous time I had needles poked in my spine, I took this as a good sign. I had about an hour after the injection where my pain dropped significantly. I put it at a 2 on the ever-popular 1-10 pain scale...I can't recall the last time I hit a 2. It only seemed to last as long as the anesthetic though, instead of having additional relief from the other meds in the cocktail.
I was able to schedule the follow-up with Lady Pan Doc. She never once made me feel attacked, which was amazing after feeling so belittled every time I saw the prior Pain Don. She said that the results really weren't what they would hope and that it indicated that it didn't make sense to move to ablation of the nerves. She suggested she approved of the pain meds I'm on (SUCH a change from being called a wimp and told to just deal w/ a daily level 8-9 pain unmedicated). I mentioned I really didn't want to need to use them for the next 50 years and she said I took the next words out of her mouth. I also said that the maintenance meds did help but I was still pretty bed-bound and I wasn't ready to concede that I'm going to spend the next 50 years in this state. She was completely understanding.
She wasn't sure what the next move would be but then mentioned that she figured I had already tried a different medication avenue. I had not, so we are trying a medicine that really targets nerve pain. She noted that patients have reported increased appetite on the medicine...people have put on weight but she said it was not the medicine itself but the increased food intake. Given my history, that makes me nervous and it felt like almost being asked "How bad do you want it (i.e. relief)?" After four months in bed, having to save up energy for a couple hours upright a week for dinner out or to see friends, the answer is clearly that I want it bad enough to deal with the side effect (Side note: Of course, the day before the appt I had ordered a bridesmaid dress based on my current size...the fact that my measurements landed me in three different sizes so I needed help from the store owner might be fodder for a future thought burst.).
The medicine can also make you a bit fuzzy at first so it is another one I need to build up over a few weeks...one week at one dose, one week at two doses, and then move to the goal rate of three doses a day. My online research has a lot of folks reporting good results with the medicine, though they noted they did have to wade through a transition time until they got used to it and the initial side effects faded. After a minor SNAFU (b/c it would be too much to ask that it work easily) of the script being sent to the wrong pharmacy, I started it last night. I am also getting some form of cream that I need to have mailed. I'll try this routine for two months and then return (happily scheduled with Lady Pain Doc again and not the evil other doc).
I asked Lady Pain Doc if I may be looking at being on this new medicine for life. She said that, if it worked, it would likely be a lifetime thing. I'm not thrilled with that, but I'll do it if it gets me my life back. On the good note, it would, hopefully, mean I can eventually stop the other pain meds which would be really great.
So, my new word.
I think one of the challenges of chronic pain is the complex relationship it creates between the patient and her body. I have never been particularly healthy. As an infant, I got seriously ill after every round of immunizations and battled what was apparently a horrific case of diaper rash (Side Note: Apparently this required a diaper-free day and infant me greatly enjoyed the brush with nudism). The migraines hit pretty young, but it was the mysterious hives that first really started the feeling of being trapped in a malfunctioning body rather than just having my body be a part of me. The relationship grew more tenuous with the endo. I think women should be able to embrace their bodies and their womanhood, but the endo makes that really difficult to pull off the "I am woman, hear my roar" mindset.
And then there's the eating and body image issues. Those are really all about how one relates to one's physical being. My struggles with those demons made it difficult to feel at peace with my body. Binging was very much my soul and mind mistreating my body. Over-exercising wasn't really any better. I felt like my body was the primary element of "me". I have definitely improved in this light, but there's still a tendency to look in the mirror and fight with my reflection. This is especially true as I've lost the muscle tone that made me feel proud and helped me feel like I was in better harmony with myself.
Now, the struggle of chronic pain. Facing severe pain on a daily basis means feeling trapped inside a malfunctioning body. It is impossible to forget that I am a creature with a body. My body overwhelms my mind and soul. The pain gets bad enough that my mind can't operate fully. The mix of pain and medicine means there are times when I can't string a sentence together....a frustrating feeling for someone who likes to write. I still do some ghost-writing for attorney blogs but there are days when I can't get the focus I need because I can't think beyond the pain. Some days, I can fight. Other days, the pain is just too much and I succumb and the pain wins.
Chronic pain means being constantly emBODYed (and making up a version of a word to express it). I know that I am more than just my body. Knowing that is an accomplishment and an improvement from the worst periods of body image issues. But still, dealing with chronic, severe pain makes never forgetting that I inhabit a body, that I am, inescapably, emBODYed. Never being distinct from, or in charge of, my body is one of the biggest challenges of chronic pain.