Add another disease to the list-even more rare than ALL of my other diseases!

For the last 19 years, the cold seasons have been my better seasons. Fall is my ultimate, because it's cool and people don't have on their heaters yet. Here in Kansas, Autumn lasted about a week or two. Then we moved right into winter. We got snow for Halloween. And my "ice pick shoved down my ear" pains have amplified right along with those colder temps. As have my trigeminal neuralgia attacks on my LEFT side of my face. I'm afraid MS is currently eating away more of my trigeminal nerve on that side now. Hands down, though, the cold weather greatly aggravates my right ear the most. In fact, issues with my hearing, dizziness, and louder ringing in my right ear have been an issue since my surgery, but especially now that it's significantly colder. Wind has been an enemy all year, but now even just bitter cold is enough to cause the ice pick to attack with more ferocity. Funny fact-I am now only comfortable between 66 and 69 degrees. Creepy coincidence? And when I say comfortable, I mean those are the only temperatures where I can see, hear, walk, and feel adequately. Outside of that range, I struggle, even if you can't see it. It's a shame I can't wear hats, ear muffs, scarves, sunglasses, or anything that touches my face or head. Sometimes it's worth the pain, but most of the times it's a tricky balance of which kind of torture I can endure.

When I met with my neurosurgeon I shared a tiny bit of information about my grandmother. She had tumors that pushed on at least 2 of her nerves. One was on her trigeminal nerve (she had deep pains and also couldn't eat or talk without causing the pains. She used paper and pen to communicate just like me!!) and another was on the nerve by her ear. The neurosurgeon who worked on my grandmother a few times in the 1960s cut several nerves. After one of the surgeries she had balance issues, which I've also had, but brushed off as simply due to my MS and anti-seizure meds. It got me thinking to ask specifically about the pain in my ear that happened soon after my minor brain surgery. I asked if it was due to me jerking my head away when I woke up and the needle was still inside my skull. He said it wasn't because the movement shifted the needle over to that nerve, but that it's related to my MS. In fact, the only people he has known with anesthesia dolorosa are MS patients. The numbness and lack of signal from the nerve to the brain is confusing. Our brains misinterpret the lack of signal as a problem-which must mean PAIN. So, we have the numbness and the pain. This was just another attack my body was making on that nerve. NERVUS INTERMEDUS NEURALGIA or GENICULATE NEURALGIA. He explained that this is EVEN MORE RARE than Trigeminal Neuralgia, TN in all 3 branches, TN on both sides of my face, AND Anesthesia Dolorosa. So, so, so incredibly rare. In fact, he didn't even have stats for this GN! I asked if I had it and he said, "Yes."

ANOTHER disease that was there, but not diagnosed until now...story of my life! 

It's getting a bit ridiculous to add up all my diseases and issues diagnosed over the last 1/2 of my life (some are obviously related to each other):

1. Multiple Sclerosis
2. Hashimoto's Thyroiditis
3. Polycystic Ovarian Syndrome (PCOS) + insulin resistance
4. Dysmetabolic Syndrome
5. Depression & Anxiety
6. Asthma 
7. IBS
8. Gall bladder (removed)
9. Fibromyalgia
10. Occipital neuralgia
11. Trigeminal neuralgia
12. Geniculate neuralgia
13. Anesthesia dolorosa
14. Melasma
15. PTSD (waking up in surgery)

The first 5 I've had for AT LEAST 19 years and the rest I've developed as my body just continues to fight itself. The last 6 I've developed in the last 4 years. BUT, it isn't normal for most MS patients to have this many issues. Then again, most MS patients I know haven't had it as long as I have! I had issues all the way back in my junior year of high school with MS (minor) & thyroid. I've also struggled with depression & anxiety for as long as I can remember living. Honestly inflammation and hormones seem to have been the biggest factors in my deterioration of health. In looking back I can see the small flares, red flags, and contributing factors, but I had no clue. Obviously even with the HUGE exacerbations and red flags doctors had no clue for a while either. 

The funny thing is that what is best for SOME of these diseases is WORSE for others. For example, vitamin D deficiencies are an issue with some of my diseases, but sun is HORRIBLE for my MELASMA and if it's too hot, it's bad for my MS. Studies show no meat is better for MS, but meat and no grains are better for the THYROID. Cold is better for my MS, but worse for my TN/AD/GN. Stepping outside in 20 degree weather when heaters were too much was refreshing or standing in front of a strong a/c unit brought relief. Now I can't handle the slightest breeze or even Fall temps! I used to be a prisoner stuck in my home a few months out of the year in southern Utah. (Granted my health and newer diseases weren't as bad or present back then). Then I came to Kansas and it reversed-there were only a few months out of the year that I could venture outside without too many issues. Now there is NO month that I can simply go outside without big issues. 

It is funny how your dreams have to change. First I wanted to be a wife and mother to many children. Instead I was a case manager and then teacher to many, many children. I traveled the world. My next humanitarian project was going to be in India to work in one of Mother Theresa's orphanages for the summer while I taught the rest of the year. Maybe I'd add one more country and round up to 15 visited countries. But, I didn't feel like that was one that would happen. Instead, I got married and even though many, many doctors told me I'd have a hard time getting pregnant, I got prego 2 weeks after marriage. Then my biggest goal was to get sleep and hoped my daughter would sleep more than 20 min at a time. I wanted to be the best mom. After maternity leave, I wanted to be a great teacher AND a mom. After surgery and retirement, I just wanted to be able to physically lift up my daughter. Then I traveled a lot through many moves across a few states. Now my daughter lifts me. Dreams just morph, change, die, grow, and take twists and turns. I got used to creating plans A, B, C & D. Letting one dream go, so another could take its place, while involving God along the way. 

Now I dream of the simplest things with EASE! It's no wonder it's called DIS-EASE! 

• Eat a taco...which eventually just morphed into EAT 
• Go outside for 50, 15, 5 minutes...and eventually morphed into GO OUTSIDE
• Laugh 
• Smile
• Sleep
• Walk
• Travel
• Read
• Write
• Hear
• See
• Touch/Feel
• Taste
• Smell
• Sit in the sun
• Sit
• Exercise
• Kiss
• Play
• Sing

Thankfully I can do all of these at least sometimes. I can't do any of them with ease, but I can do them. I don't let the pain, worry, struggle, or lack of senses chain me down to full surrender. I may find myself at times DIS-couraged, DIS-abled, DIS-ordered, DIS-tracted, and want to DIS-appear, but I find the positive aspects of each state more often. In fact I'm getting better at doing them despite the pain! Day to day it doesn't seem like much improvement. But looking back, I have definitely improved. Less is holding me back!!! A lot of people struggle with taking things for granted, missing out on the small moments, simplifying, feeling gratitude, or a myriad of aspects of life that flitter by. All of my diseases may rob my body of many functions, but it definitely lets my spirit take the wheel in other ways. When I CAN go outside, smile, laugh, walk, travel, hear, see, feel, sit, kiss, play, eat, or sleep, I appreciate it so much more. It's the smallest things that have become my new BIG things. Sometimes I hate it. But most of the time I love it. 

EASE may have stopped in my teen years as DISease was replaced, but my determination, optimism, and faith keep climbing. Most of the time you don't want to plateau, but these days that is kind of my lofty goal. 

Often I feel as though I've maxed out my blessings. Travel- maxed at 13 countries. Careers-maxed out at 2. Children- maxed out at 1. For a while in the back of my head I still thought I could get control of my health and have ONE more child (foster care, adoption, biological-I didn't care). Maybe we could visit a country or two with careful planning? But those dang diseases keep climbing. Instead of getting 15 stamps on my passport, I got 15 diseases. Balance in everything, right?

I'm declaring with like 66.6% certainty that 15 diseases/issues/syndromes/tortures are my max. Done and done. I can relate really well to those 'OVER THE HILL,' so I feel like it's on to greener pastures, smooth sailing, and retirement, please. I'll hold off on the REST in PEACE, but I would also like extra portions of rest AND peace. Thank goodness medications, family, friends, and the priesthood do offer these to a great extent. 

P.S. I'm super, duper, UBER aware of the fact that my body isn't completely broken. Disease may be rampant, but I'm not only a diseased/disabled person. I still have some working parts and abilities. =) 

P.P.S. I've decided to donate my body to science after I pass. I was already an organ donor, but chances are when that happens no one will want them. haha