Surviving on a wing and a prayer

I've been surviving on a WING and a PRAYER!

I know it's an idiom, but truly I take part of it literally these days. I feel the strength of prayers and angels on both sides of the veil even more than I felt in the first few weeks of anesthesia dolorosa (after my surgery).

In the beginning, right after my surgery, I knew prayers saved me in some ways. The neurosurgeon was disappointed that he didn't get V1, but as previously shared, it was a good thing he hadn't. I would most likely have permanent cornea problems and possibly blindness. I've had vision problems for 19 years, but I can still see (unless I get too hot or my MS gets out of control, but even then it's temporary). The prayers, gifts, and previous help kept me alive.

Once I got out of the hospital with 4 days of IV antibiotics almost continuously, I still had a bit of the pneumonia left in me. So, I continued breathing exercises/tools/medicines and slept sitting up for about a month. But each week after I got out of the hospital I seemed to get just a little better and a little better with my anesthesia dolorosa. I'd originally hoped that many people's prayers and fasting would produce a miraculous, INSTANTANEOUS healing. It didn't. I wanted to report to everyone who had sacrificed and worried over me that I was much better. But, instead, I couldn't tell. I noticed emotionally I had greatly improved. I had gone from wanting to die and planning my funeral to thinking I could make it. Surviving and being able to picture living for a long time even if I had this wretched disease for a long time was a gigantic blessing. It was baby steps of improvement. I suppose much healing often comes in smaller doses, step by step whereas you don't realize the improvements until you look back. I knew for sure that I could feel prayers, my dark, dark depression was lessening, and I had no major side effects to the new anti-seizure medication I was slowly increasing. All the other anti-seizure medications had horrible side effects and as we increased, my body couldn't handle it. I had all hopes that I would continue to get better and better, even if it was a very slow process with this new medication added to my regimen.

My brother was getting married and we knew financially and physically I couldn't handle it. I had come to terms with it and then all of a sudden we could financially afford to attend!! But, alas, my health still wasn't quite good enough to drive in the car for 4 days. The week of his marriage, however, we found out on Tuesday we could fly. I felt good 'enough' ish to go. That Friday night we were there. I couldn't talk or walk well, but we made it. I had to take lots of breaks and do much less than usual, but on the day of the wedding I had a wonderful surprise of being able to talk in the morning AND the night. This was the first time in 9 weeks!! The wedding day was stressful (all 3 of us didn't sleep well for days, too much pain, a daughter who wanted to explore and had to sit and take pictures while her mom couldn't chase her down and talk to her, tons of crowds, etc). I definitely wasn't at my best, but I was THERE! I even got a bonus blessing that for 10 minutes on the flight in, my ear popped and I could hear! It didn't last, but it was marvelous. The way back was okay and I even got about 2 minutes of my hearing returned as we left. But, alas, I got much worse and the stabbing ice pick in my ear and spreading pain up and down my neck has gotten worse.

I figured I would need crash time once I returned. What I didn't expect was that my anesthesia dolorosa would progressively get worse. Much worse. I rested a lot. But, each day I was getting just a little worse and worse. My meds were less effective. I was still waiting for my CBD and didn't know what to do. I was reverting back to how I was right out of the hospital. 2.5 weeks later I was again more depressed. It was just like ALL the times before. My anti-seizure meds lose their effectiveness. So, we have to increase, increase, increase until you can't anymore and have to try a new one. Each only last about 2 months before I struggle. I hadn't realized it, but in looking back, it was about the same time frame as the others. I hadn't expected it because it seemed to work well and had virtually no side effects. I had thought it was just the matter of finding the RIGHT one. "5th time's a charm," right?

I also learned recently that my thyroid is the MOST inflamed it's ever been before in my life. (It explains why I have trouble swallowing, feel like I have a constant sore throat, and have some pain). My thyroid has attached to the tissues surrounding it. They can't do anything more than have me take higher doses of selenium. I still have hypothyroidism and will still have to get regular ultrasounds and biopsies as well because of the growing nodule. To my husband and I, it was just another drop in the bucket-add it to my tab. We both shrugged and said, "Of course." =) It did help that I had a little more answers as to the pain in my neck and ear. I was getting it from anesthesia dolorosa, thyroid, and my continued eustachian tube dysfunction (mine isn't your typical one) issues.

...

THEN, I got my CBD in the mail. I had tried another one, but a dose was too much oil for my stomach to handle with not enough relief. I decided to go for a higher dose. I got a balm, pill/capsule, and spray. The pills and balm aren't great for me. But, the spray...just as my neurosurgeon had said Europe and Canada had advanced further and faster than us, they had a spray in their pharmacy and I found one to order online (hemp source legal in any state). I had thought I could spray it on my face without touching it (like a gentle, medicated mist). Nope. It was much thicker than the oil I'd used earlier in the month. I made a mess and decided to take it as directed. It had peppermint with it which helped with some of my nausea. AND GUESS WHAT??? It helped. On my second day I had almost an HOUR with my lips NOT burning!! AN HOUR!! I talked freely. We went on a drive and stopped at a beautiful spot. I had to still be careful, but for about an hour I felt mostly like a normal human being. We had found the ticket!!!

And then the next day, Sunday, was one of my worst days I'd had.

I hadn't changed a thing. Kept up with the exact same medications on the same schedule, same CBD, stayed cool, stress level down, and couldn't control the pain, twitching, or anything. Out of control anesthesia dolorosa.

I couldn't sleep at all. I was up for 48 hours or more before I could finally sleep. It's been quite the up and down rollercoaster. I suppose in many ways it was good for me to be able to look back and see the relief I had been getting slowly but surely. The prayers and fasts worked miraculously, just not as I expected. Thankfully I'm back to being very careful with how much I talk, go outside, etc. I'm back to somewhat manageable pain. I do have more pains than I had 3 weeks ago, but they aren't as bad as they were on Sunday.

I'm still surviving on a wing and a prayer. Lots and LOTS of prayers. And wings figuratively of my angels on the other side and my many angels here on earth. Bless you into eternity. THANK YOU!



For ME-->

Changes:

Somewhere in there my burning levels on my lips has decreased some. It increases more if I talk, laugh, yawn, eat, etc. At night it also increases even if I don't do anything. Still intermittent stabs of burning, but overall burning level has come down. It went down around the time that a second group of friends fasted for me. It has stayed pretty consistent since then.

Week 8- Much more pain, stabbing, twitching, aching, less controlled by meds, increase in ear pain
Week 9- Even more increase in pains
Week 10 - One of my worst days in the last 1.5 months squeezed between 2 good days and 2.5 decent enough days. Now when face is touched by worst spot by mouth, feels like a hair is stuck there and won't leave (i.e. after shower for 2 hours or so). More sensation also of bugs crawling under skin still by ear and also by mouth. Dramatic increase in stabbing pains by mouth at night. Still haven't figured out correct times for medications to spread out but not spread too thin.

Anxiety has increased (because daggers, sledge hammers, ice picks, yanking & punching teeth, knives, and electric bolts hit me without provocation and when I go out, typical hygiene, eat or socialize). I have noticed it and do not want to let anxiety rule me. So, I continue to do daily hygiene no matter the cost, talk to someone at least every other day (beyond my husband), and go outside twice a week. Once for a massage and once for church. It was recently that I started going for massages (which I felt EXTREMELY guilty about, but have decided it is necessary for me. It has helped with generalized pains in body and anxiety-->something to look forward to that decreases some pain), and once for church.


Started WFPB/Overcoming MS diet with husband's help. Very successful. Bad cravings when I didn't sleep 48+ hours, but subsided dramatically and quickly since then.

Minor brain surgery and WHY FAQ

I decided to do a basic Q&A of my Trigeminal Neuralgia and Anesthesia Dolorosa, simply because it's easier here. Several people have asked specific questions and I feel like this is the easiest way to answer. I am completely fine with questions and if you have more to ask, don't be afraid. I'm a pretty open book these days. My, how 10 diseases and adulthood makes you more open. haha

Question: What is Trigeminal Neuralgia?
The TRIGEMINAL nerve is the 5th cranial nerve that has 3 branches. It is how you feel in your teeth, lips, tongue, eyes, cheek, forehead, nose, etc. Trigeminal neuralgia (TN) is when this is damaged or compressed, then chronic pain ensues. The pain is excruciating and feels like stabbing, electric shocks, burning, crushing, exploding, or shooting pains. Often it is intermittent, but with MS can lead to more frequent attacks with less remission time between. It is one of the most painful diseases known in the medical world. Think of how sensitive your lips are, your eyes, if you've bit your tongue, or if you get a tiny particle in your eye. Magnify that by a million with hot coals, scissors, knives, fire pokers, branches, boulders, and more and it still won't touch this type of pain. ha.

It is also known as tic douloureux or "The Suicide Disease," because so many patients committed suicide before treatment was developed.

People with TN due to a compression or agitation are usually from a blood vessel or tumor pushing on the trigeminal nerve. This is much more easily treated than those with MS. MS trigeminal neuralgia actually tears away the myelin sheath which protects the nerve and actually destroys the nerve fibers, as well. This makes the communication between nerves and the brain or spinal cord less effective and to misinterpret signals as pain. (My brain actually thinks I'm being stabbed, burned, etc). This is kind of like the coating on electrical wires being exposed and misfirings, glitches, and other issues happening between the brain and nerves or spinal cord.

The neurosurgeon explained that my trigeminal nerve is very, very bad (damaged). Most people only have TN on one side of their face/head. But, my MS has destroyed both sides of my trigeminal nerves, as well as the left side of my occipital nerve. Few people also have all 3 branches of the Trigeminal nerve affected, but mine has been destroyed/damaged on all 3 branches on my right side and 2 branches on my left side. Before my surgery V1 and V3 were my worst pains and were progressively getting worse in frequency and level of pain.

http://fpa-support.org/wp-content/themes/fpa/assets/images/tn.jpg

http://www.health.harvard.edu/media/cr/205896.jpg

What can they do for Trigeminal Neuralgia?

Most often people simply have the tumor or blood vessel moved or blasted away, relieving the pressure. Kind of like a water hose being kinked. But, mine is like a water hose that has been torn down, holes poked all over, and lava replacing some of the water. haha. It doesn't mean mine is more painful than someone with a tumor or blood vessel but I use the simile to explain the differing issues in treating the two types of TN. I won't get into the variety of surgeries for that type of TN. (Balloon, Gama Knife, Gauze, etc). In these cases the trigeminal nerve hasn't been damaged as it is with MS. Mine, however, has been very damaged and is therefore much more difficult to treat. Often others can simply go on a medication or two (usually an antidepressant or anti-seizure medication) and it stops the pain signals from getting back to the brain. They do well. Others try medication after medication and it doesn't help. In fact, it continues to get worse. I was the latter type of patient. I've had TN for 4 years. My 3 neurologists didn't know what it was, and therefore didn't know how to help me. I also didn't have insurance for part of this time, so I just suffered through it. After I met with an incredible ophthalmologist and discovered I had OCCIPITAL neuralgia (often just a temporary issue), we finally found out that there was a name for my facial pains as well. Trigeminal neuralgia. It is often a long road to answers, just as my MS diagnosis was decades earlier. Mine was also compounded by the fact that I had lost hair over the spot that was swelling and stabbing. I had developed HYPERthyroidism after 15+ years of HYPOthyroidism (I have Hashimoto's thyroiditis-another auto-immune disorder). 

Once we got my thyroidism under control, we could focus more on the face and head pains and swellings. I tried 4 different medications but continued to get worse. At this point surgery was the next step, since medications obviously weren't cutting it. 

http://www.mayfieldclinic.com/Images/PE-PSR_Figure1.jpg

For MS caused TN, I went in for RADIO FREQUENCY LESIONING (Rhizotomy). They make an incision by the mouth with a long, hollow needle and enter the brain through a small opening in the skull. They then use some heat from electrodes to cause lesions in the nerve. This numbs the nerve so that the pain signals to the brain stop temporarily. It stops temporarily because your body will try to fix the lesion (like a scab). Once you gain feeling again, the pain signals continue and you keep getting the surgery. (Usually 1-2 years but can be as soon as 6 months and as long as 3 years). Ironically, I have brain lesions which causes so much havoc on my body and do not heal. But, there is a 90% success rate with rhizotomies and much further down the road if it stops working they can do an open rhizotomy where they completely kill the nerve. It causes more problems with permanent numbness, but BELIEVE ME, it is much better than the unbearable pain. ALSO, you cannot treat both V1 and V2 or else you risk permanent cornea and other vision problems. It's simply too risky. So, the plan was for V2 and V3. But after further discussion we decided V1 and V3 because those were my worst pains. It is hardest to get to V1, but worth a try. 

What happened in your surgery? 

I wasn't supposed to remember it. They go in, make sure they got the right spot, and put you under further. The most they said before the surgery was that if they got the right spot some patients actually have a tear drop from their eye because of the pain. Or a nod or yes when you are groggy and mostly out of it. Then they know they got the right spot and use the full heat to cause the lesion AFTER you are put under completely. You don't remember it and don't feel the pain like you would when it is actually destroying the nerve fibers. (Again not fully destroying the nerve). I went right under anesthesia once I was situated on the surgical table. I was happy, jovial and optimistic and then blissfully asleep. Truly I had no worries. I was put under and they did my first branches of the trigeminal nerve lesions. I didn't remember the first two times they did it. But, I was in surgery for 2 hours. At the end as they were doing the final lesions, I woke up and felt the full effects. I was screaming, jerked my head and begged them to stop. The anesthesiologist I believe didn't give me enough towards the end. I could feel the needle in my skull, the burning, and the pain was out of this world. The anesthesiologist quickly gave me more and my body jerked more than it ever has before (I jerk a lot throughout the day because of my medications but it's mild). They quickly stopped the procedure and I continued to moan and jerk drastically. I remember them moving me from the surgical table to my rolling bed. I even asked if I needed to help move myself to the bed. (They said no and the nurses moved my body instead). They wheeled me down the hallway. They parked my bed and the nurses, anesthesiologist and neurosurgeon stood around my bed to see if I could feel and how I was doing. I kept saying, "It hurt. It hurt." The neurosurgeon asked what hurts and I clarified, "No, the SURGERY hurt. It was horrible. It hurt so bad." I was still just so awake. All of them looked at each other worried. The shock on their face was almost comical if I hadn't have been in such horrific pain. He felt my forehead to see if V1 worked and I could feel it fine. He and I realized immediately that my worst pains would stay. It didn't work. V2 and V3 did instead. I was wheeled out of surgery at 10:00 am and at 10:05 I was begging to leave, simply because I hated the experience. The pains were so severe as I was rocking back and forth holding my head that they wouldn't let me leave. They gave me pain killers that usually knock most people out. It didn't for me and the nurse said, "It seems like nothing knocks you out. Like nothing works on you." I saw others being wheeled out of surgery around me and they were groggy and totally out of it. I was jealous. In other surgeries I've had I also come out of anesthesia quicker than most patients. I think it is because I have to function at a difficult level on a daily basis. When most would lie in bed, I am up talking and walking/hobbling. However, I have NEVER been out of anesthesia while on the surgical table and so awake as I leave the room. 20 minutes after being wheeled out of surgery I left the hospital. I believed 100% that the surgery would be successful. I was shocked and depressed more than I had been before. In looking back I think I had some PTSD right after the surgery because it was so terribly traumatic and didn't go according to plan at all. I know they gave me more when I was screaming, but was forcing myself to stay awake because I was so afraid. I also am so grateful for prayers and fasting. I can't imagine if V1 had been completed. They did it 3 times and if both V1 and V2 had been lesioned, I could be permanently blind. I'll take my darkened, altered vision over permanent blindness any day!

What happened next? What is anesthesia dolorosa?  

Immediately after the surgery, most of my face and head was numb and I felt like an ice pick was being shoved down my right ear. I couldn't hear very well out of it and I still got the trigeminal attacks. My lips burned, I couldn't chew on that side or taste very much at all. My tongue was stinging, I felt like bugs were crawling under my skin by my ear, and it was a very difficult adjustment. I also got a cough either immediately after the surgery or by the morning of the next day. I was told to just take tylenol and I couldn't even take advil until 6 weeks post-op. The pain continued to spread and the numbness didn't leave. A spot by my mouth always burned with intermittent jolts of electricity. My lips always burned and when I coughed, yawned, spoke, smiled, etc, the burning increased. My tongue was almost all numb and it felt burning and stinging always. I felt like someone was constantly yanking out my teeth (lower) and I was always being kicked in my front teeth. I had to chew on my left side of my face, which was my worst trigeminal pains on that side of my face. It was like leaving the dentist with a terrorist torturing me non-stop. If I had been placed in a dark room and told I was being tortured to death I would have believed you. It was because I was the 0.8% who got anesthesia dolorosa. My brain misinterpreted the numbness as severe pain instead. So, I HAD numbness, but ALSO now had NON-STOP burning, yanking, stabbing, stinging, crushing pain ON TOP of still having trigeminal neuralgia attacks. It is EXTREMELY rare and I was one of those patients. The more I did, the worse the torture became. 

Anesthesia Dolorosa literally means painful numbness. Without doing anything I have extreme pain. But if I do anything that causes movement or any slight form of touch to that side of my face I pay dearly. Yawning, smiling, talking, laughing, eating, a fan, a very slight wind, lying down, showering, kissing, etc, causes MORE pain, burning, yanking, kicking, shocking pains. Coughing was especially difficult. With MS I had to choose daily what sacrifices I would make and pay for later in the day, week, or month on a lower level of pain, fatigue, nausea, and dizziness. Now just living was supremely painful, exhausting, depressing, dizzying and knocked me down emotionally. 

With my recent sickness (I believe I got from someone in the waiting room at the hospital, which later my husband and daughter got as well), it was an added level of torture. I tried to get into my family doctor and/or nurse practitioner. They were backed up by two weeks. I went to the Urgent Care and the doctor gave me steroids and said I had an eustachian tube dysfunction that was pretty severe. (My eustachian tube had retracted into my head and it caused an imbalance of pressure). I also had an obvious cough, but it hadn't reached my lungs yet (bronchitis). She said if I was still struggling to wait 2 weeks and then she would give me another round of steroids, even though I explained over and over that with my MS I always need multiple rounds because my body is always attacking itself and my immune system is so bad. 

Two weeks later I passed out once and had fevers, chills, and almost passed out several more times. My husband covered me with ice packs everywhere. I kept thinking I just had to hold on until I met with my neurosurgeon. I was feeling significantly better the next morning. We were regular with ice packs, it was cold outside (January), and I was about to hopefully get a new medication to take away the severity of my new pains. However, apparently I looked pretty bad. I had a fever of 102.6 (I had been much, much worse for 2 days earlier but never took my temperature), obvious infections, and the nurse, doctor, and others were very worried. He told me that I DID have anethsesia dolorosa and that they could no longer help me with surgeries. BUT, he was most worried about my current situation and sent me directly downstairs to the ER. He didn't want me to walk down with my walker (which surprised me because I was walking better that morning than I had several days before). I got a nurse, wheelchair, and ended up 12 hours in the ER. It took that long to get my fever down. They tried a spinal tap (even though I told them I always need at least X-ray and to lie down. The cocky doc didn't listen to me and failed. (More details in an earlier post).) He pushed and pulled several times and was surprised at how well I handled it all. Everywhere they looked they found infection. Because I was in so much pain I didn't know I even had pain in some parts. ha. Pneumonia, sinus infection, UTI, and possible meningitis. Because the doctor didn't listen to me, by the time they could have gotten a spinal tap with Xray the next day, I would have had SO many antibiotics in my system that it wouldn't have shown up. I stayed in the hospital for 4 days with IV antibiotics almost continuously. I struggled breathing, could only get up with a nurse to use the restroom, and was grateful that even though I'd told my mom I was fine, she came from Idaho to help. 

Once I was out of the hospital it was easier to move forward. My two neurologists met with me. This time they were worried about my depression and how severe the anesthesia dolorosa is to deal with. I was put on more medications. Both my neurosurgeon and neurologists are meeting with me much more regularly. It is a long game of try this med and hope for the best. 

How did you handle it all? How can you keep going? 

Truth be told the depression, suicidal thoughts, and anxiety were something I have never experienced to this extreme before. I have had depression and anxiety for 26+ years, but this was a level I had never known. I am grateful few people in this world will ever know it. Around November I was quite depressed over my health and financial situation. I opened up a TINY bit about it and friends came to my aid. Some friends I hadn't really been in close contact with for more than a decade. I thought I was so lost and forgotten. Even unloved. But, they helped us in more ways than I can count. All of a sudden we were able to survive December, January, and February when I had no idea how we'd make it. They lifted a burden I had carried for 3 years. They answered prayers I'd given years before and continued with each passing year causing me to question more and more. It was like I had prayers answered a few times in the years before and then all of a sudden the heavens opened up. I thought all was turning around and my surgery would be the ICING ON the cake! Little did I know that ALL of their sacrifices and assistance would actually help me to survive the worst journey and darkest depth of despair I'd ever known before. By having my financial struggles, it opened a door for angels on earth to assist me in so many ways. They all gave me something to hold on to physically when I felt like I had so little to survive on. My friends and family still are lifting me when I physically, emotionally, and at times spiritually cannot. I have developed a greater appreciation for the gospel, Priesthood, and God and Jesus, as well. My connection to my Father in Heaven and Savior have developed even more. 

I also focus more on what I CAN do instead of what I canNOT do. For example, I was thinking about how sad it was that I hadn't really sung in over a year and wasn't sure if I'll ever be able to sing again. (My trigeminal neuralgia will always be with me). Then my next thought was, "Well, I could hum along. I usually just read the words or think them, but I could do more." My daughter loves music and I used to feel awkward at church when I was the only one not singing. But, I thought...I can even hand it over to my spirit. My spirit can belt it out. I still listen to music almost daily, so it's still an influence. 

Additionally I do a worry journal, which I've done for years. I pray-A LOT. I use notebooks or texting to "talk," as well as Facebook. I'm learning sign language. My daughter and I can communicate pretty well without words. We've been able to for a long time. I'm planning a trip with a friend, whether I can make it or not. I am seeing a counselor. Sometimes it is worth it to smile, talk, laugh, and then I reach my max and stop. I keep telling myself "Every minute, every hour, turn the pain into power." I pretend like the pain is good and to accept it. It's a reminder of what I've overcome and will overcome. When I'm sad about not being able to do the most basic of things, I allow myself to feel the sorrow. But, I don't let myself stay there. When I can write and see well enough I journal. A friend is teaching me tapping and I'm learning some meditation stuff. I'm eating better (I've tried WHOLE FOOD, PLANT BASED OFF AND ON for a while. I never stick with it long enough, though. This pain a great motivator). I am much more limited by going out than I was before (which is saying a lot), but I force myself to once a week still. I find things daily to be grateful for, even if they are miniscule. A dear friend and I share our good things daily, as well as in my prayers. 

My family is my strength. My friends have been my beacon of hope. The gospel of Jesus Christ gives me eternal perspective. 

Are you getting better?

Somewhat yes, somewhat no. I'm learning that if I just sit and rest, without interacting with anything or anyone, my pains aren't as bad until the end of the day. But, it's also not much of a life. All of this is teaching me balance even more than my MS has for the last 19 years. Half of my life has been lived altered and painful. I'm on many medications, creams, and trying alternative methods to deal with it. So far everything is VERY temporary. The only thing I've found to last about 4 hours are my various anti-seizure medications. When I get off by 30 minutes, I pay so dearly. But, even with all of my medications, I still have a great deal of pain. Sometimes it comes when I do absolutely nothing. The afternoons and evenings are the worst for me. Overall I want to die less, so that is a huge improvement. It used to be that I wanted to die 98% of the day. Now I'd say I want to die 1% of every other day. Last week it was probably only a few minutes in about 5 days! The pain in general is better, I would say. I would NEVER say I'm used to it, but I am learning to live with it. So, that is a remarkable improvement. I am sleeping better. The burning in my lips is better. My nose isn't numb at all. My ears popped for 12 minutes last weekend! So, there are some obvious physical improvements. Even more than that is the emotional and spiritual improvements!

(Weeks 8&9: I itch more which is hard to deal with, but I assume it means I'm healing.)

I can literally feel prayers of others. I can feel when many people are praying for me and then when prayers of people stop or go down in number. It is kind of remarkable. When prayers are high, I feel strength to carry on and much more hope. Even when the pains are bad, I still feel like I can handle it. It's almost like physically they are there, but emotionally it isn't as bad. It's hard to explain. When the prayers go down, I feel EVERYTHING more. It pulls me down more. Last week I was feeling pretty good. This week I'm doing a bit worse. The pains, even though my meds haven't changed, are worse. I don't know if that was because I went to my brother's wedding or because my body is again adjusting to the medications. There is only so high you can go on anti-seizure meds and only so many available on the market. However, I've got 2 more weeks and then I'll be at full dose for my second anti-seizure medication. I'm hoping that I'll be even better then. 

Have you thought of/tried medical marijuana?

No, I haven't tried it. It's illegal in Kansas. Have I thought about it? Heck yeah, I have thought about a LOT of things since anesthesia dolorosa. My neurosurgeon suggested CANNABIDIOL. Cannabidiol (CBD) is NOT medical marijuana. Marijuana has many compounds but the two most common ones are THC and CBD. THC is the one that gets you high. It is a psychoactive part of marijuana. I don't want that part and my neurosurgeon agreed. I understand that for some people they do want all parts of the marijuana plant in tact and it helps them, but I personally don't want the THC for me. The CBD instead is extracted and you are left with the part that helps with pain and mood. It is NOT psychoactive, addictive, and will never get you high. Higher concentrations of CBD are available with a medical card in a few states that have passed the laws. I do not believe in recreational marijuana use. However, JUST getting CBD for my pains sounds like a 5th good option. You can get it from a HEMP plant, which IS actually different from marijuana. In fact if a marijuana plant has 0.3% or less of THC, it is reclassified as hemp. Marijuana has also been modified over the years to have a higher concentration of THC in ratio to CBD. CBD, by the way counteracts the affects of THC. A dear friend sent me an oil form of CBD, with a very low concentration (3mg mixed with olive oil per dose). I've tried a full dose and it makes me sick, but I'm thinking it's the oil. I've cut down on my oil consumption this past year and seem to get more sick when I use it. I'm looking into topical or tablets/capsules. However, when I've tried my cream or this oil rubbed on my face or gums, once it wears off (1.5 hrs), my pain is worse than when I started. So, I'm still learning how to deal with it all. For now I use half a dose (1.5 mg) twice a day just dropped into my right side of my mouth. I'm also still waiting on the machine I put on my forehead. Thankfully since Jan/Feb, I have been able to pay for all the expensive medications, creams, doctor's visits, travel expenses, and more that I would have put off just a few months ago. 

Are you going to die from any of this?

From the diseases and reactions directly, no. People don't die from MS or any of my other diseases. However, with MS, my immune system is constantly fighting itself. People die instead from infections that your body struggles fighting through most often. It is a big reason why it was so scary (which I underestimated until I spoke with the doctors later) that I had so many infections after my surgery. But, I'm good now. In the beginning of my struggles with anesthesia dolorosa I did think about death a lot. Thankfully those thoughts don't come as often. 

Is there a cure? Can you just find the right medication and then be okay from there?

No, there is no cure for any of my diseases. With anesthesia dolorosa, sadly, there is not much they can do beyond medications. And even a bit more tragic is that it often isn't enough. Since my MS seems to be continuing to attack my nerves, there is a very good possibility that I will continue to get worse. There is a very good chance that the medications will become less and less effective, as they have in the past. But, mentally I just tell myself that we will cross that road when we get there. Until now I'm just focusing on surviving. I hope someday to thrive. I'm learning balance. I'm realistic in that I most likely will not be able to have the pain completely disappear (although I'm COMPLETELY open to it and think it could be a possibility). But, I do believe that I'll be able to learn to live with this. I feel like I'm already half way there. I'm laughing more. I was afraid I wouldn't, but it is such a big part of me, that I still do. Granted, I have to force myself to stop and that has impacted how often and how big I laugh. But, I still laugh. And smile. And talk. Sort of, on most days. I believe one day there will be a cure. I am with an INCREDIBLE neurosurgeon who is brilliant and specializes in Trigeminal Neuralgia. He is so understanding, compassionate, knowledgable, and won't give up on me. I have friends and family who won't give up on me either. Most of them knew me back in my healthy days. They know I don't give up. I'm optimistic, faithful, and determined by nature. They also know I suck at asking for help or admitting my weaknesses. They've stepped up as I've fallen down. I'm learning to be more open, ask more, and share more of my weaknesses. In doing so, the blessings have touched me tremendously. 

I take these medications daily plus an oil, cream, and hopefully a few more in the very near future.

Will you always have anesthesia dolorosa?

Most likely, NO. I will always have trigeminal neuralgia with a good possibility that it will continue to get worse. There is a type of trigeminal neuralgia that is also constant pain, including the burning. But, I have the intermittent pain for now. The anesthesia dolorosa should only last as long as my body keeps the lesions. For most people that is 1-2 years. For some that is 6 months and for others it can last as long as 3 years. It is the amount of time it takes for your body to heal the lesions in the nerve. 

***UPDATE, SEPT 2017*** We HOPE the answer is NO, but I have discovered that many have anesthesia dolorosa for the rest of their lives. In fact, their AD continues to get worse and worse without options of relief. 

Why didn't the prayers and fasts work?

I'm working on a blog post specifically about prayer. ...to be continued =). Short answer: they did, but not in the way I expected. Also, people often think faith just takes into account our will, but completely discount the Lord's will. And just because the answer is "Not right now," doesn't mean it won't happen later. 

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.