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.