It’s been a long time, so let’s catch up.
Hmmmm….I’m sorta in remission and have a fulltime job for next year. My husband could not handle my condition, so we are in the midst of a divorce (don’t feel sorry, it’s freeing actually…I guess you can feel bad for him, he’s having a tough time with it). Summer actually comes to a close this week as classes begin next week to get ready for the new school system, THAT is making the timing of everything very stressful…I just need to let it all go and enjoy I guess. It will work itself out somehow. Easier said than done.
Trying to find a dentist to clean your teeth when you have trigeminal neuralgia is like, well, pulling teeth.
I went to see the allergist/immunologist by myself and it was fine. A few glitches, but overall fine. It was nice to wiggle my toes in the sand again. It was nice to find out what is up with this cough. It was nice to prove I could do it on my own.
To my friends and family who have given me support and space to fly, thank you. I love you more than you will ever know.
My Friend Rantz Tagged me:
My modified meme:
“Reach for nearest book,
Turn to page 23
Find the second sentence and
Post the next three sentences.”
Cadence by B.J. Hoff
Things were right for them right now, and Renny meant to do whatever he could ro ease Vangie’s worries and the needs of the children. If only she could read… Her mind raced as she hauled the chair along behind her, heading down Mulberry Street.
When I was pondering this subject, I came across this great blog A Chronic Dose . She found a source that said that 75% of marriages where one or more partners have a chronic illness end in divorce. I remember the day I wrote those words for my marriage ceremony and was totally serious about them. I even endured the “jokes” about how my husband should have taken out an extended warranty on me. I faithfully took care of him after his stroke, even if it meant stopping at a friends house on the way home from work to vent, pray or cry.
So what happened? I’m not sure. He went to the neurologist with me and asked NO questions about trigeminal neuralgia. He admittedly read little about it. In my mind it seems as though he used it as an excuse to take away my freedoms and show what a great husband he was by taking care of me; all of the while thinking this was the worst time of his life and me feeling like a prisoner in my own home and car. My neuro put his foot down the other day and gave me my car back…it was glorious, and I’m not giving it back. And after the conversation about this being the worst time of his life and refusing any type of therapy, well, I am scared, but I think I’m ready to be part of the 75%. I’m happy for my parents and other people who made it work, but it’s just not working here. In fact, I’m thrilled my parents are still together, cause I’m going to need them more than they know (or maybe they do).
And yes I do remember every detail of that conversation that day. It’s seared into my memory forever.
“You’re free”…that’s what my husband said to me this week. While that sentence has interesting undertones, in simple terms, I can drive my own car whereever I want, whenever I want, whereever I want, YIPEE!!!!! This has been TOO LONG coming! Also, I got an exemplary on my evaluation, and managed to teach 2 1/3 classes yesterday (full-time is 3)…I had arrived at 6:45, so I almost got an entire planning period in as well (would have if I had drive alone). Hmmm wonder if they’ve ever had a teacher work 6:30 until 1:30 before? If they were willing to do that, I could work full-time I think. Interesting idea since they need more Geometry teachers. We’ll see how Monday goes (math tournament.
Well Thursday ushered in a weekend full of bad weather. And along with it, another blurry eye episode. Only this one didn’t trigger the neuralgia, it triggered a migraine that did not respond to my rescue meds. So I tried samples the neuro had given me along with caffeine. They worked. Apparently, I’m enterering a whole new world of migraine aura. Actually this makes me feel better, not worse; because it means that the new little opthamologist didn’t know squat. I may get an MRI at some point and I may be developing MS. But I’m not scared right now. Which is good. I have too much going on to be scared.
This monday I drove for the first time in 4 months. Mainly because I had a decent day at work and my neuro was surprised I hadn’t even attempted driving since going on the trileptal. I was fine. Someone even cut me off, and I just eased off the break. Hubby said that for the amount of time I had been not driving, I was calm and handled everything surprisingly well. I cannot explain the amount of independence this one little move provided me. Of course the rest of the week sucked, and I didn’t drive again; but just knowing I could if I wanted to was wonderful and powerful.
One day last week my vision went blurry in my left eye (the side with the neuralgia), and it hurt and it scared the snot out of me. I also had stabbing pain in my face every 15 minutes. SO, once I finally got the nurse to understand what was going on and convey it to the neurologist, all I had was pain meds and an appt with an opthamologist. The next day I go to the opthamologist, who after finding no optic neuritis (swelling of the optic nerve), and no problems with the retina, and only mild problems with depth perception that I supposedly have had all of my life and he doesn’t know why I would just now be noticing them; procedes to tell me that the neurologist would have to perform more tests to confirm MS. I was like I haven’t even been told he suspects that, I have trigeminal neuralgia and migraines. Then I asked if the tests were an MRI with contrast to look at the mylin of the optic nerve, and he said yes, very sheepishly. He said he would send a full report to my neuro. And the appointment was over, just like that. Leaving me more confused and scared that beforehand. Oh well, such is life.
Through a strange snaffoo in mail order pharmacy, I ended up resorting to local pharm who only had brand. Guess what, the attacks stopped, dead in their tracks, even though we went from 70 degree weather to the coldest day recorded with flurries and will go back to warm weather in a day. Hmmmmm, perplexing. Talked to someone about this who said that a pharmacist said that sometimes our bodies react differently to the fillers in the generics than in the brands. How odd, since I have a friend who did the opposite, went from a lot of attacks to none after switching to generic. Our bodies are very very weird indeed. I shan’t be posting the fillers or the drug name here, but would be interested in who’s had a similar experience with ANY medicine (you don’t need to name the med).
Time to go to work. Still not driving 
I’ve written several things over the past month and just saved them. They were more cathartic for me to write than for anyone to read.
If there are any chronic pain patients out there who still read this, I’m curious. Do you go through a loss of independence? Not driving, depending on someone else when you are really sick. And as a result, do you feel like you are losing yourself? That you are no longer yourself, just this burden to those that loved you and a memory to those that used to?
Do you lose your confidence of being able to understand your condition, set forward an action plan, know what the future holds? I no longer know what I want to be when I grow up. That is slowly being snatched from my hands.
Do you find yourself researching and reaching out for support and turning away frustrated, tired of the prospects that lie before you, unable to give anymore of yourself. Do you long to hang out with “normal people” but find yourself not having much to say?
Do you find yourself while researching and go “if people only knew” (see Trigeminal Neuralgia)
Do you find yourself lost, afraid to move, afraid not to move.
I feel you my friend.
