I had a few weeks there where the pain was only drizzling in at about a 3-4 in the mornings and then a 6-7 in the evenings. It was almost nice. It was a break. Just as suddenly as always, a front has moved in, and a pain storm has hit. As with any storm there are bursts of incredible intensity (10+), and then moments when the wind dies down (5’s). This storm started this past weekend, after I got whipped in the face with the news of another rejection from my insurance company for my motor cortex stimulation surgery. Do I detect a stress/trigeminal neuralgia flare-up connection?! Certainly.
Sunday was an odd day. It was my 31st birthday and I had a mostly wonderful morning eating breakfast with my husband, parents, in-laws, and soul-sister/best-friend from childhood “Wormy.” It was really magical to be all together, enjoying each others’ loving company. I only wish my brother, sister, brother-in-law, and soon to be brother-in-law could have joined us. Sadly I was a bit mentally distracted from the loveliness of the moment. I had pain pain pain. For those of you who do not experience pain, it can be very confusing to be experiencing something so horrible and upsetting when you are simultaneously experiencing such joy. I wanted so badly to be in the moment with the people who I love, yet this TN was pulling me away. One of the most emotionally taxing parts of having a chronic condition is the lack of control. I want so badly, especially in moments like my birthday breakfast, to tell me body “ENOUGH!” Where is the off button? Why can’t I will it away?
The pain has ebbed and flowed since then, but has stayed in the Pain Storm category (a term coined by my supportive husband). Today I am suffering tremendously. My TN pain is beyond a level of distract-ability, and I have a raging headache. I never know how long a storm will last. Sometimes it is a few days, sometimes a week, but occasionally a month or more. I can only hunker down and wait for it to pass.
In the meantime, I have written and submitted my appeal letter to my insurance company. I am happy with my letter. I think it is informative about my life with TN, succinct, and explains why motor cortex stimulation surgery is medically necessary for me. I do expect this next appeal to be denied as well, as it is an internal review. My hope is the final appeal, which is an external review, will be approved. Otherwise I will bring legal action against the insurance company. I will not accept no for an answer. Forever-pain will not be my life.
Now if only I could somehow stop this level 10 pain in the meantime. But I guess that’s the whole problem to begin with anyhow. I mean who would choose brain surgery if they could stop the pain without it?
This was taken from my personal blog at LeeLeeBot.wordpress.com