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Every single thing I do brings tortuous pain. There is NOTHING I can do to get away from the pain.

Breathing.
Eating.
Swallowing.
Kissing.
Talking.
Showering.
Sleeping.
Brushing my teeth.
Washing my face.
Walking.
Laughing.
Singing.
Coughing.
Sneezing.

Living.

100% of the time I struggle with the following:

*My lips are on fire
*My tongue is burning/stinging
*I can't hear well out of my right ear, chew on my right side, and can barely taste anything
*A section near my chin burns (with intermittent stabbing pains)
*A section by my ear feels like bugs are crawling under my skin
*I feel like someone is yanking out my lower jaw
*I feel like someone is kicking in my teeth
*When I cry it feels like acid is running down my cheek (but it's better than wiping it and causing my entire half of my face to burn in pain)
*Pressure and pain is on my cheek
*I feel like I've been hit by a truck under my eye, along my cheek, and along my jaw (somewhat under)
*A portion of my face is always numb


Intermittently I still get stabbing pains above, in, and under my eye, along my cheek, on top of my head, behind my head, and on my left side as well (eye and jaw/teeth). I also still feel like an ice pick is being shoved down my ear drum and stabbing pains go along my neck in two places. But, I'm not sure if that has to do with another infection or if it's just a new part of my pains. Part of my face also twitches or looks like a tick. Sometimes it jerks my eye lid shut too much.

I'm much more sensitive as well. Things I used to do to cool my body down now cause the intensity of pain to increase.

*Fan blowing on me
*Cool air
*Ice pack near my face (not even touching, just on my chest or left forehead is too close)
*Eating or sucking on something cold
*Touching
*Any movement

I felt better than I had the two days before, although I still felt quite ill.

I know some things will pass. Breathing will eventually be easier once the pneumonia and sinus infection leave my body. Both of my hands' IVs stopped working and became inflamed and really sensitive. They still are and I assume the swelling will eventually go down. Since being out of the hospital, and off antibiotics, my cough is intensifying again, as is the pressure in my face. Everywhere they looked in the hospital they found infection. They worried about meningitis but the cocky ER doctor in training couldn't get the spinal fluid. He told me they almost always just did spinal taps without technological assistance. I told him the ones where they didn't use anything weren't successful. He was surprised I'd had others (this was my 6th) and I asked if I could lie down on my left side. He told me he'd just have me sit up since he wasn't worried about pressure. I voiced my concerns, but he ignored me. He propped me up on some extra blankets on the table with WHEELS, told me to arch my back like a cat, and kept trying. Pushing and pulling over and over and I tried to keep the wheely table in place with my foot, but I'm short. It moved twice and then he had the other student stand there to stabilize the unsteady table. No luck. It moved again. That time both of us looked at him. The student said, "It's okay, I'm here." I thought..."buddy, you had ONE job." But, I kept telling the overconfident doc I was fine each time he attempted and eventually he gave up. He decided by the time they could finally get me in to do it with X-ray, I'd have had the loads of antibiotics in my system and it may not show up now. I'd been in the ER for 12 hours and I was bad enough I had to be moved up to the neurosurgery floor. I had a team of 5 doctors and was glad they knew what they were doing. My sweet husband finally went to a quick care and found he had walking pneumonia. With his walking pneumonia and my pneumonia, sinus infection, and UTI, we were quite the pair. My mom flew in from Idaho and I felt incredibly blessed. My main doctor wanted me to stay in the hospital for the 5th day, but another on the team thought I'd be fine to go home after 4 days. In the end, I wish I had insisted that we follow the directions of my main doctor.

If you've been following me on Facebook, you know the details of more of my stay and ups and downs.

When I met with the neurosurgeon, I was feeling better than I had the previous two days. I had passed out once and had nearly passed out several times. I had fevers and chills and my husband had to cover me with ice packs. My pain was out of control. But, I just kept holding on until I met with the neurosurgeon (I had met with the quick care doctor the week before and she didn't listen too well to me either when I said ONE round of steroids is never enough for me). I thought I was doing better, but apparently my temp was almost 103 and he ordered me downstairs to the ER. He is a wonderful surgeon and held my hand as I cried. He explained that I WAS in fact one of the RARE people (.8%, not even 1%) who got ANESTHESIA DELOROSA. There was nothing more he could do for me surgery wise. He wanted me back to discuss medications, but at this point, it was the only route to go. He was so compassionate and kind. The whole reason I had done the surgery was because medications were not working. The ones I was on were less and less effective. You can only go up so high on anti-seizure medications. But, I quickly learned that there is ONE thing WORSE than TRIGEMINAL NEURALGIA...ANESTHESIA DELOROSA. You go from intermittent pain to CONSTANT pain, on top of the intermittent pain because your brain doesn't recognize the numbness as it really is.

I wish I could count how many times doctors have told me, "It's rare..." as if it would never happen. I am that RARE person, even though I believe them and go ahead with their recommendation. Or when I go back in and explain my symptoms and they look it up to find a few cases that were reported with side effects or allergic reactions similar to mine. Even down to the dentist with fluoride varnish. It's almost as if I can now count on my body rejecting anything out of the ordinary that has been altered from what God put here in His form.

I met with my two neurologists, nurses, pharmacist, and a case manager. They were concerned that I was depressed, until they learned the constant pain I face. (pun intended). Then they just kept saying, "Wow." and "You're so brave. You're so strong." over and over. (nurses and case manager). My mom kept agreeing with them and repeated, "You have no idea." I cried when I told my favorite neurologist that before we had decreased anti-seizure medication because it caused me to jerk too much, my vision became too jumpy, dark, and double vision for me to do anything like read, drive, or see well, and I was losing my memory and ability to concentrate. Maybe some was just from my MS. But, I told him, at this point, "I don't care if I can never drive, read, remember, lie still, or concentrate again." It's a hard place to be.

Every minute of every day right now, I have to choose which torture I want to endure and how much (and how long). Even in my dreams I constantly dream about death. I still have to sleep sitting up right now. The other day I dreamed that as I was trying to wake up and get to the door, an evil male voice laughed, "No one can hear you. How does that feel?" While still dreaming, I was praying that I could survive. I have to pray through every minute almost of every day, asleep or awake. It is exhausting. But, I know I just need to adjust to the new me.

I can barely remember how it was 19 years ago before I had nausea, pain, fatigue, dizziness, dark vision, and ringing in my ears. When it first started I was frightened. I didn't know how I could carry on not exercising, running, seeing or hearing well (with some intermittent memory issues). But, eventually I learned how to deal with it all. It made me better instead of bitter, although I had my moments. Now, I have to do the same thing all over again. It appears as though the trigeminal and occipital neuralgia will forever be with me (intermittent pain, but as my MS tears down the myelin, it will get worse). The neurosurgeon said when he went in, my nerves were SO messed up. He used the lowest heat setting on me. To imagine them getting worse is a bit dismal. However, I am quite hopeful that in 6 months to 3 years the constant pain will alleviate as my body tries to repair them. I simply have to learn how to adapt, just as I have with every other MS exacerbation.

The thing I'm worried about is how much will it change me? When Christ prayed to the Father that he wanted the cup taken away from Him, I used to think I sort of understood. No one can truly comprehend the magnitude of Christ's suffering or perfection. But you try to understand and take it to heart. It's also explained that he was sore amazed and very heavy. In 3 Nephi 11:11, Christ talks about how He was the light and the life of the world; and "I have drunk out of that bitter cup which the Father hath given me..." Doctrine & Covenants 19:18, "Which suffering caused myself, even God, the greatest of all, to tremble because of pain, and to bleed from every pore, and to suffer both body and spirit-and would that I might not drink the bitter cup, and shrink- Nevertheless, glory be to the Father, and I partook and finished my preparations unto the children of men." (I'm not comparing myself AT ALL to Christ. But, I'm saying I understand these scriptures a little better now.)

I feel like I have shrunk and begged God to not make me drink this bitter cup, although it pales in comparison to Christ's pain and suffering. I've shrunk in who I am (except weight wise). I used to travel the world and now I rarely venture away from my couch. I used to laugh and smile so much that some people called me "laughy girl" before they knew my name or followed my sound through apartment complexes or school hallways in order to find me. Now I avoid comedies or dramas and try to nod to people instead of my usual expressiveness. I used to try to lift people physically, emotionally, spiritually, and now have held on for DEAR LIFE to those around me and their tokens of love and support (my dear, dear friends and family). I'm afraid in 3 years I'll not laugh as loud, smile as big, talk as often, or reach out as I have my whole life. Maybe I'll just be a shrunken version of me. I hope not, but I'm afraid it may beat me down to oblivion.

When I was in the ER at hour 7 or 8, I had enough pain medication that for the first time I felt almost no pain. I'm talking a pain level of 3 or 4 (I haven't been a pain level 1 or 2 since 1997 or early 1998). I don't remember the last time I had so little pain. I laughed loud, talked much, and cried happily to my husband that I couldn't believe how it felt. It was alleviated! It only lasted 5 minutes. A few days later my hubby joked, "I should have made out with Kali. Missed opportunity." haha. My heart breaks a bit for him. When I was back from the hospital he said, "I remember when we talked before we got married. We thought the WORST would be bedridden and getting around in a wheelchair. I would trade that for this any day." Before we got married, we talked about the best and the worst. The best and the worst case scenarios.

I was poked 15 times (if you count the failed spinal tap) and had 9 bruises all around (not including both hands with the bad IVs which are still swollen and sensitive)

Since so many doctors told me I'd have a hard time getting pregnant, we talked about what we'd do if I couldn't ever have a child. It wasn't a big deal to us. Foster care and/or adoption was a dream of mine and he was completely open to it as well (his sisters have found great joy by doing so). I've seen how many children in desperate need of love would benefit from a couple unable to bear children physically, so it just excited me to find a man on the same page! We went through a lot more "WHAT IFs..." What if we were poor and had no money? What if we were far from family? What if my health got so bad that he had to push me around in a wheelchair or take care of my basic needs? Addictions, frustrations, idiosyncrasies, habits, fears, intimacy, finances, mental health, physical health, social issues, child abuse, last days, spirituality, and so much more. We were ALL for it. We were ready to take on life's challenges and joys. This, however, we had never heard of, anticipated, or could have even imagined a struggle and sorrow so deep.

I do worry about the heavy medications I'm on and the road in front of me. I am aware of the possible side effects and struggles ahead. Already my vision is changing some. I feel like I want to read all the books I can until I can't anymore. I want to watch all the movies I can, see all the landscape out there, and so much more.

I used to dream so big. I wanted to do humanitarian service on EVERY continent. I had done Europe, Middle East (Asia), North America, and Africa. I wanted to get all kinds of degrees. I got an Associate's, Bachelor's, and Master's. I wanted to be settled and happy with who I was and where I was. I bought a 2,100 sq ft home in a gorgeous place and met some of the most amazing people I could have imagined all along the way. I had the wedding of my dreams (better) to the man of my dreams (better), and was sealed for eternity. I bore the most beautiful miracle baby I'd ever seen. All while I had many diseases and struggles.

Now...
I dream of sleeping through ONE night (it's been almost 6 years, because of pain).
I dream of playing with my daughter and being close with my husband without wincing in pain and almost falling over.
I dream of camping ONE night in a cabin or a tent.
I dream of singing, laughing, and talking without pain ONE time without supreme torture.
I dream of running ONE lap without major complications.
I dream of visiting ONE more country or taking ONE more cruise.
I dream of developing ONE talent or hobby I used to have.
I dream of making ONE new friend without them looking down on me.
I dream of living and loving it.

It may never happen. Then again, maybe it will. Maybe it's just baby steps along the way until I can relearn how to live. How to thrive. How to love without pain. Everyone has to do it in one way or another. My mountain feels a little steeper than everyone around me, but maybe it's not.

Here is what I've learned the last few months:::

*I've used sign language with my mom and daughter (she can spell her name and we can communicate with just mumbles and actions well). With my husband I've used a notebook I got from Christmas. When I'm with others I just talk and pay the consequences until it is truly unbearable. My niece and nephew with their rare kidney disease (Alport Syndrome) are very likely to lose their hearing and possibly their vision (up to 90% I believe). I'm going to spend this time learning sign language with my daughter. It's frustrating when you want to say something so simple, but can't.

Communication!!!

*I believe 100% in the power of PRAYER, PRIESTHOOD, and FASTING. However, I also believe that the answers will at one point or another have to be NO. If it wasn't the case, no one would die. Which would make for a VERY full earth and I know there are missions to accomplish on the other side of the veil. Suffering is not pointless. I believe that I willingly took on these trials before I came to earth. WHY I thought I could handle it is beyond me. But, it's what I'm going through and eventually I'll get through it. A HUGE reason for me keeping up on my blog all of a sudden is because I want to look back on these times when I thought there was no possible way to survive. If I can get through this, I can get through nearly anything. It is so much worse than I ever could have imagined. But, hopefully the joy will also be so much more than I can imagine at this point in my life.

*No man/woman is an island. We are here to lift each other. I have been lifted through MIRACULOUS ways. I wish everyone could be blessed by some of the most amazing people on earth as I have. However, I wouldn't wish this load on a soul. God is aware and loves us. He loves you too.