Thursday, January 2, 2014

Quit Micromanaging My Health, It's My Business!

Trigeminal neuralgia is severe facial pain known to doctors as the Suicide Disease, and for good reason. Not only is this type of pain agonizing, it is difficult, often impossible to treat. I need treatment for my trigeminal and glossopharyngeal neuralgia, but the day I walked in to start things off, I was told the government has denied me the beginning to my treatment: a shingles vaccine.

Nope, didn't ask a government agency to pay for it or even to administer it. They however, without being a physician who has examined me, or knowing me or my illness, have created a blanket law that states that no one will be allowed to give me the vaccine until I am 50, even with my doctor's orders and written prescription. Not in the USA anyway.

I am 49.

My neuralgia is suspected to come from my autoimmune disease, Sjogren's syndrome. It began many years ago in my right ear, and has slowly spread. A few years ago, it showed up on my left side too, and lately has spread like wildfire. Without quick treatment, my neuralgia may become worse, and permanent. Since I cannot safely take the oral meds needed to try to control it, I am in trouble. My rheumatologist has prescribed a biologic drug to modify my errant immune system, which we're praying will help to control the inflammation and crazy nerve impulses that control my life. We've been slowly working up to this treatment over the last year and a half.



I now have what feel like knitting needles stabbing my eyeballs, bee stings in my eyelids, and scissors stabbing my jaws, ears, throat and tonsils as well as the base of the right side of my tongue. Some days I can neither eat nor drink, and talking is impossible without indescribeable pain. Add a Migraine, and I am frantic with pain that isn't controllable in any way.

My doctors feel that the biologic may be helpful, but I need a shingle's vaccine first, to make sure that, after we tank my immune system, I don't make the nerve problem worse by getting shingles (a nerve condition) on top of everything else. 

The government thinks I am too young. It hasn't taken into consideration that this immune system treatment will be lifelong, and dangerous. It hasn't taken my disease into consideration at all. That's what my doctors are for. My doctors insist this is vital and I agree with them. Simply said, neuralgia worse than this is not compatible with life. 

I don't know what I can do at this point, but pray and make phone calls. Starting today, that's the plan. Right now, I get by, moment to moment, day by day. I haven't blogged much lately, due to the medications, the intense pain, the brain fog and bad eyesight, and I am so very sorry.  I hope you'll hang in here with me. 

This girl could use a few friends on her team :D

3 comments:

Cindy McMillan said...

I hate when people who don't know you get to decide w h at is best for you. Keep fighting.

Migrainista said...

Wow, I had no idea this law even existed - doesn't make any sense at all. I'm so sorry for this random road block in your treatment - and even more sorry for all this pain you are having to endure. I hope and your doctors will e victorious in your battle with the govt.

Anonymous said...

Hello - I have just found your blog by doing a search on the effects of LDN as treatment for chronic migraines. I read a blog you posted in 2011 called MS and LDN.

I am sorry to hear you are having such a painful issue with neuralgia! I hope over the last months you have found some relieve.

Have you continued the use of LDN? As a follow-up I would like to know how any LDN treatment has adversely or positively affected your migraines.

My husband is a chronic migraine sufferer with daily debilitating migraines. I am doing my best to research on his behalf.

Thank you!
Katherine