Which Plan?

Since August/September we've known if we could just SURVIVE until the end of February/first weekend of March, we would be okay. My husband started school and since it's a trade/vocational school, funds are extremely limited. They don't disperse student loans until 1.5 months-2 months AFTER you start the semester. Odd. But we knew the sacrifices we were making for the advanced, 23 credit hour semesters, would be worth it if we could just survive FINANCIALLY. I thought that was all I had to push through. Baby steps to March. Then graduation in May!

Little did I know that it was so much more than that. I prayed and prayed. Up until the last minute I wondered if we would make it. And then blessings started pouring in. More blessings than I could have dreamed of and I realized that for the first time in THREE years my prayers were beginning to be answered in gigantic ways. Miraculous ways. Don't get me wrong, little prayers were answered along the way, but they were more spaced out and far between. They were often just BARELY enough to carry on with a few HUGE blessings sprinkled in between. But the struggles were so grand that our hope dipped quite a few times. We maintained faith, determination, and gratitude with a vision of 3 years being quite a lengthy battle with all we had been up against. We could see the light at the end of the tunnel financially and that burden was finally being lifted. I could get all the medical assistance I needed. We had plenty of food, money for utilities, and more HOPE than when we had started. Things were turning around, robberies had stopped, health was better for the hubs and little one, and plans were being made for me medically. It was gonna be easy breasy from here on out. ISH. 

I had no idea that emotionally, spiritually, and socially I would be pushed beyond my limit, needing so much more help than I anticipated. It turned out that our financial struggle was the open doorway for others to squeeze through to lift me in ways I couldn't myself. 

It's been 6 weeks since my Radio Frequency Lesioning surgery for Trigeminal Neuralgia (V2 & V3, right side). When I went into the surgery I believed 100% that it would work. I had no doubts because there was so much success statistically and I had people praying for me in larger numbers than I had dreamed. I thought it was the ticket to things turning around for me. I'd seen so many other miracles recently that obviously this was just the icing on the proverbial cake. It turned out that it wasn't God's WILL or plan for it to work for me. Instead it made me significantly worse and I needed the help of others to SURVIVE. Not to thrive. The miracles and connections I'd made recently were for me to hold onto in my darkest, most painful moments I'd ever experienced before. 

I still struggle immensely with all of my constant pains. I've learned to not have my hair down in case a stray brushes against my cheek. I have two pillows now so I don't accidentally roll over mid sleep. I still wake up often with pain, but I'm getting better I think. I don't answer my phone on my right side and don't go out without something to block a slight breeze. I plan my teeth brushing for 30 min to 1 hour of no interaction with others because of the burning. I'm learning the new limitations and ways I pay later in the day for what I do in the morning or afternoon. I'm starting to learn more sign language and teaching my husband and daughter. I'm still figuring out the cocktail of MANY medications and the timing of all of them. The side effects are difficult, but the pain is worse. So, it's worth it for me. Thankfully my sister in law in KC has been taking my daughter during the week. My Relief Society has been wonderful, especially the president! My mom flew out when I was in the hospital and helped me heal. The darkness suffocating me earlier is lifting through the charity of many angels here and beyond. 

The medications take a bit of the edge off as long as I don't delay even by half an hour. My schedule is pretty important these days. Not because I have anywhere to go or really anything to do. But, when it's med time, it is TIME. However, since my nerves are so bad (myelin torn away too much), medication can only do so much. 

I still struggle with:::

Constant burning and stinging in lips, tongue and a half-dollar sized circle by my mouth. It's kind of like my curling iron I used to use. You can increase or decrease the heat level and even use TURBO. 

I was on TURBO burning pain for a while, but now I'm at a medium level I suppose. From a third degree burn to a second degree burn. But the burning curling iron never leaves my mouth, tongue or face. The more I talk, yawn, cough, laugh, or smile, the more the burning turns up. If I talk too much the burning is too much and the jolts of lightning are unbearable, so I stop. Often at home I use a notebook or hand signals or simply don't talk. Many times it is worth it for me to burn more. Sometimes it's not. 

The sensation of BUGS crawling under my skin seems to have gone from a level 10 to a level 8. Sometimes it gets annoying.

The feeling like a sledge hammer or lightning bolt slamming into my face comes intermittently, especially when I shower, forget and lie down with a tiny bit of my head touching something, or sometimes just for fun. 

My teeth still feel like I am ALWAYS getting root canals on most of my right teeth (bottom) with no anesthesia. (They're all connected to the trigeminal nerve, so essentially I kind of am). I feel like someone is yanking out my jaw, kicking in or twisting my front four teeth, and sometimes ALL of my teeth have issues because I still have trigeminal neuralgia on BOTH sides of my face. 

I still twitch, moan, struggle sleeping, and the most basic activities are now my biggest obstacles on a daily basis. It used to be fatigue and shaking were my biggest hurdles to hop over daily when I got dressed, brushed my teeth, showered, and took care of my daughter. Now, however, I have the fatigue, twitching, shaking and PAIN! 

Good news:::

1. I can sleep lying down now. 

2. I only wheeze and cough a little bit. (My pneumonia and hubby's walking pneumonia are mostly gone.)

3. My 2 neurologists and ESPECIALLY my INCREDIBLE neurosurgeon are amazing and taking everything very serious. I thought my neurosurgeon would just follow up with me and say good bye since he can't do any more surgeries on me. The nurse and neurosurgeon were very pleased I looked better than my last visit, but VERY concerned because they know how severe my nerves are and how horrific ANESTHESIA DOLOROSA is for a person. If Trigeminal Neuralgia is the suicide disease (one of the most painful diseases known in the medical world) and is usually intermittent, you can imagine that having that PLUS constant burning, pressure, stinging, pounding, and pulling is a new level of torture very few people experience. Thankfully.

My first 3-4 weeks were honestly very, very difficult. I struggled finding a reason to live, to be perfectly honest. As I mentioned before, my family and friends TRULY saved me and gave me reasons to carry on. Talking, laughing, crying, smiling, and anything else that caused any movement with any part of my face was torturous. Every time my daughter or husband kissed me I winced in pain and flinched when they got close. I isolated more and the sicknesses in our house just took off. Sleep became impossible, daily care was difficult, and by the time I was passing out or almost passing out, I was at my ultimate low. My anxiety has skyrocketed because of a few new medications, as well as the new constant pain and tiny little things that aggravate it all. When I shower I now get used to ...well, I never get used to it...I have come to accept the sensation that daggers shoot from the shower head and a sledge hammer falls at surprise. Washing my face and brushing my teeth causes an extreme burning and increase in pain. Since I was born without a real sense of smell, I'm more obsessed about a daily shower than most, unless I'm on death's door or camping. (Heaven or hell). I suppose it's a good thing because the more I have to face my demons and torturers, the stronger I will get. Maybe. 

The hospital stay was especially a turning point for me. I was in the ER for 12 hours. I wasn't worried, but apparently everyone else was. Everywhere they looked I had infections and I apparently didn't sound or look too good. My fever wasn't coming down for a long time. Because of the possibility of meningitis they had to do a spinal tap. The cocky doctor didn't listen to me and failed. He attempted 4-5 pushes and pulls. To me it was a pain level of 2, not a big deal. He asked several times if I was okay and I just slightly shrugged and said, "Yeah, I'm fine. Keep trying." There was an eye roll or two. He was so surprised by how well I was taking it. It was my 6th spinal tap. Not really a big deal, especially compared to Trigeminal Neuralgia. 

Once they moved me up to the neurosurgical floor, I was still struggling breathing, coughing, swelling, and with my pain. There was a man I saw who walked the floor often. Most of his nose was missing and distorted. He obviously had some surgeries on his face and had more to come. We waved and nodded to each other every once in a while when my door was open. You could see his health struggles and I felt for him. He could only tell I was always in the bed and could only get up with a nurse. Looking at me, you can't tell the pain I have and that is mostly a blessing. It's been that way for a long time. I prefer for people to not worry about me and know of my struggles. Now you can tell a little bit if you see me with my walker, cooling vest or the swelling, face twitches, or brighter lips (sometimes they turn more red). Honestly, though, if you don't read my blog or fb, you would just think I have MS. That used to be my worst disease of the 9. But, now it's not. Being in the hospital and since I've been out I've refocused more. I've remembered my time in Kenya, Israel, Greece, teaching, as a case manager, and connecting with my friends and family. That man was happy and friendly nonetheless. I'm guessing he had pain too. He could do more than I could do at the time, but had more limitations as well in some ways. Life is just that way. Sometimes the struggles of others are obvious while others are hidden. Some may get out, reach out, and smile along the way. Others may lock their emotions up, hide away, and not move forward by even an inch. Up until that point I had been barely moving forward. I was consumed. Granted, I had pneumonia, UTI, sinus infection, was trying to heal from the surgery and had the new dreaded anesthesia dolorosa with only ASPRIN to take. Being in the hospital was a blessing in more than one way. One, even though I told my Mom I was just fine, she knew how I am (I say I'm okay-even when I had started to die many years ago). She came. Two, it took massive amounts of IV steroids over 4 days and 12 hours in the ER to get my fever and pneumonia under control. Three, I decided to accept God's will. One dear friend in particular around this time also helped me focus on my future. 

I know I'm too wordy and digress...

Anyway, at one point I was really struggling to breathe, was coughing too much, holding half of my head rocking back and forth and crying. We called in the nurse (twice) and when she came for my pain meds she asked what my pain level was now...to which I replied, "An 8?" When she left, my mom's gaping look told me I might have been off. She said, "An 8?!? When you're crying, barely able to breathe, holding your head...you're AT LEAST a 9!!!! A 10 for most people." We laughed a little because my pain scale has significantly altered since the TN, but especially since the anesthesia dolorosa. 

I remember when:

I was a junior in high school and had so much abdominal pain I would go out in the winter and lie down on the pavement in the back yard, crying. Now I know it was cysts erupting on my ovaries. My MS might have also been present since I did have some levels of heat intolerance and MINOR issues with vision when I played volleyball. I thought that was a 9 or 10 back then. Now when my cysts erupt, I'd say they're a 3. 

When I was in my first year of college, my vision and hearing completely went away and when they came back I felt like someone was taking a hammer to my head. That was a 10. Now it's like a 4-6 depending on my exertion. (MS to Occipital Neuralgia)

When I got stabbing pains around my ribs on my left side I thought that was an 8 (Tietze's Syndrome). Now it's a 2.

When I was in my graduate program, student teaching, and my gall bladder was failing (causing stabbing pains, vomiting, and nausea), that was a 9. Now I look back and call it a 5. 

When I was in labor for multiple days and my OBGYN thought it was just a kidney stone, that was a 9! I only ever got up to a 5 (my uterus was too exhausted from 5 days of labor), but the pain was up there until I got the epidural. Now compared to this, labor was a 6. Maybe a 5. 

The last 3 years as I had stabbing eye, face, and head pains, my irregular heart rate, increased anxiety, insomnia, hair falling out into bald spots, and other issues, I thought I'd reached my max at 9-10! Nothing could be worse. 

This, THIS is worse. That was a 7. This is a 10. But, I think with medication I'd call it a 9 at night and 8 in the morning/early afternoon. Maybe in 2-3 weeks when I'm at full dose with my second anti seizure medication I'll be a 7! It's been recommended I get cannabidiol (CBD, different from the cannabis oil wherein the THC is left in tact. This one is from hemp sources often and has no psychoactive ingredients). It will only help with 20-30% of the pain, but it MAY be the difference between me TALKING and SMILING without incredible pain. Can you even IMAGINE? Maybe even laughing. I laugh now mostly without opening my mouth. But, I assume in 2-3 years I'll be able to again with or without another medication. I will always have TN and ON and most likely they will get worse (they've continued to get worse over the years and become less and less managed with meds). But now that I've had AD, I think I can handle intermittent pain. 

Life is so funny, right? I had a plan for my life since I was a little girl. Graduate from High School. Get married. Become a mom. Live happily ever after. 

Mr. Right wasn't at my doorstep come graduation, so I went to college. Mr. Right didn't fall from the sky, so I kept moving along. I got degrees. Served. Traveled. Matured. Accomplished all kinds of goals, while never giving up on finding my love. Waiting and getting "NO" or "WAIT" answers from God made sense. There was still so much GOOD I could accomplish. I created BUT IF NOT plans. Plan A, B, C...and then some. I adjusted, adapted, and attained other goals. It was worth the wait. Once I found my Mike, I saw the timing was perfect. There was so much purpose in waiting and progressing whether or not a man or child came into my life. Once I was married, I was okay if we needed to adopt or do foster care. 2 weeks later I was prego and then after having her with my health declining, we adjusted the amount of kids we could have. As my health continued to decline, we readjusted what I could do. But, I always felt eternally blessed to have what I had. I still had value. And then this happened and I couldn't find my Divine Worth. It was like it was spliced away on the surgical table where I woke up. Screaming in pain, moaning, and jerking, begging the doctor to stop. It was as if I was begging God to do the same. Just STOP.  

This part of my journey I have struggled understanding the reason for it. I don't know why I'm the rare .8%. I came to terms with my MS and other diseases in time and found much good from it all. Finding good from ANESTHESIA DOLOROSA has been a struggle. To not be able to talk, laugh, smile, or really do much of anything has greatly challenged me. As we've added more medications and increased others the side effects are worse than before. Darkened vision, twitching more, worsening memory, struggling cognition, and so much more. But, I'm coming to accept the pain more and more. It's an adjustment and I'm sure I'll eventually look back on this and re-rate my suffering level. If I had been left on a deserted island with only my pain and my anti seizure meds (and a few antidepressants), I would have shriveled up and died. Not because I would have done anything to myself (well, at some low points I probably would have swam towards a shark or two), but because I would have lost myself. Thankfully, I didn't. I'm still here and pushing forward. There were many who really lifted me and several who really carried me. 

God has a plan. I know His plan is the BEST plan that leads me back to Him. It's bumpy. It's hard. It's a steep climb with a whole lot of bruises and pain along the way. A few people have questioned my faith or positive thinking. I know they don't know me too well, but I do have to say I have had faith all along. I truly believe that IF it was God's WILL to heal me, he could. In an instant. Through the Priesthood, just as Christ had, His apostles, and prophets of old. BUT IF NOT, I'm okay with it too now. My husband is too. It took me a little while to accept it. That my life had any value if things didn't change. I felt so exhausted from pushing through so much pain for so long. 

I thought if I had enough people praying for me good outcomes would come from my surgery. Physically I became much worse. But emotionally and spiritually I have grown stronger. I have come to know God and Christ even more than before. I have found more value in myself. I have reconnected with dear friends and learned that I'm not forgotten or alone. I still have my weak moments. Much has changed. My sweet daughter cries sometimes that she now wants to live with me and daddy again. (She does live with us, but she stays with her cousins many days in the week). I can't go to my baby brother's wedding in a few weeks. It takes a great deal of motivation to take care of myself. But, I'm relearning my own strength. 

When I read about Abraham and Sarah who waited so long to have a child, then were asked to SACRIFICE their only child?!?! How could Abraham AND Isaac have taken even one step up that mountain? How far did they travel? How many chances did they have to turn around and doubt? In the end the future wasn't as bleak as they had both imagined. Was part of the journey to show Abraham, Isaac, and Sarah how strong THEY were? Sarah had to stand by and watch them leave. Isaac had to find the ram and lie down. Abraham had to raise his arm with full intention. If they could overcome the greatest fear they ever could have imagined, while always looking to Christ and God along the way, nothing else could stand in their way. 

I have SO much further to go before I ever get to the point of Abraham, Isaac, or Sarah. Or many other amazing people who have gone ahead of me. But, I do know that year by year I'm facing my biggest fears whether I like it or not. I'm finding ME. It hurts. I still don't know WHY. But, I do know HOW I can carry on. Eventually I will overcome it, through Christ's healing power and God's will. On HIS timetable, with me sometimes kicking and screaming along the way. Mostly that's just my body twitching from the meds and moans from the pain, though. Mostly. 

I'm just glad I never have to go through it alone.