I am struggling to stay positive. I keep trying to Pollyanna my way out of a miserable pool of self-pity, but it’s difficult to do.
I have much to be thankful for. My children are supportive and loving, my parents are helpful and loving, Dan is wonderful, my work is patient and supportive. I have caring friends. I finally have a good doctor with a plan who meets with me regularly. I should be content.
Instead I am struggling to find the energy to keep going. The new medications make me tired, nauseated. They give me muscle cramps, make all food and drink taste like copper, make my muscles tire so easily that I have a hard time finishing this blog post. They have long term side effects like heart scarring.
I want to be cheerful and hopeful. I want to believe I will get better and find a solution and be able to resume something resembling a normal life. I just, can’t. Not today. Not right now.
It’s been so long since I had a stretch of feeling great. A week of pain free living. I am not sure I believe that is something I will ever get.
I met with my new doctor this week. Dan took me to see her and when we got to the door I thought they were closed. You know, because the lights were muted, there were no fluorescent lights at all, it was quiet. There was no loud music, just a super low classical playing. The walls were painted a dark brown, with a matching carpet. All the decorations were dark in color. It was like a cave. A lovely muted cave.
The doctor’s assistant is named Novella. I’m taking it as a sign. The doctor herself bears my godmother’s name. Another sign. That and her last name is Lane, as in path, as in a new path.
She is a whirlwind. My hour-plus appointment with her was spent learning I do have migraines “Just migraines, I don’t know what all this other crap they have been going on about is, cluster and tension headaches go away, you present with persistent migraine”, that I do have trigeminal neuralgia, that I will need surgery, and that I struggle with feeling happy not simply because I am in pain but because the migraines literally sap my brain of the chemicals it needs to keep me happy. In other words, she took me completely seriously, had done her homework in advance, didn’t rush me, and developed a plan.
A PLAN PEOPLE!! I have a PLAN!!!
I left overwhelmed, reeling, happy, and in tears. I am not sure why the tears, except that having someone validate me instead of throwing meds at me was wonderful.
Treatment is going to be a full time job. I try to remind myself that my headaches were a full time job, but my brain is currently trying to rabbit.
I am happy, however, that I will be treating this headache with a doctor who believes in approaching migraine from all aspects of life, instead of just medication.
Oh, and the other thing? She asked Dan in with me so he would know what he was dealing with too. So, supportive and knowledgable boyfriend, check.
The brain surgery is out-patient, which is so futuristic to contemplate that my mind wants to rabbit whenever I think about someone rooting around in my head with a steel crochet hook and then sending me home.
The scary part is that I am back on the Topomax. This is a big trust thing for me. She swears she has a medication to counter any cognitive disfunction resulting from the drug, but I am terrified. Last time I was on it I lost 40 pounds in three months and forgot words like “table” and “glass”. Dan has offered to conduct daily word game tests to track any potential side effects.
The other scary part is knowing that the future holds a week or two or more at this ultra intense migraine clinic in Michigan if we can’t get it under control here. She kept telling me that the clinic used I.V. meds to find a solution in this really excited voice, like I should respond as though she were telling me the clinic used 8 hours of massage a day. I do not find I.V. meds nearly as enticing as massage. However, it’s good to know there is an end game here, you know, that isn’t MY end game.
She spoke 8 million miles a minute and made notes for me that look a lot like pidgeon feet on sand so I am still trying to remember the entire picture, but those are the high points. (And low points. And silly points.)
That is basically my new medical plan. For now at least. It turns out the fancy drugs they gave me to assist in fighting off the shadowboxer caused suicidal ideation. Long term use of opiates does the same thing for me, so I am used to randomly being ready to hang up the towel when my brain chemistry is altered by various medications.
So I called my doctor and used the magic words. “Dear Doctor So and So, I want to drop a piano on my head. Please advise”. I had an appointment the next morning where he took me off all my currents medications and started me on all new ones. He also ordered the following:
Go to sleep at the same time every night.
Wake up at the same time every day.
Eat breakfast, lunch, and dinner at about the same time every day.
Exercise every day.
Work at the same time every day.
He basically ordered a “Fake it ’til you make it” prescription. I started it yesterday. It was grueling. I wanted to fall asleep at noon, so instead I spent two hours cleaning. I ended up going to bed at ten. Ten took forever to get here.
So, today I woke up to get the kids to school. Stayed up after seeing them off, made myself eat a healthy breakfast, and am now sitting down to work. I assume someday this routine will reset my circadian rythyms and seem more natural, but for now, it feels a little like water boarding. I keep forcing myself to keep doing stuff until it’s time to go to bed.
Managing life with chronic illness requires savvy spoons
