Trying to make peace

I saw my myasthenia gravis (MG) neurologist today for a followup. I’ve been having a decent run with symptoms for a few months. I still have crazy, weak episodes but I’m recovering from them faster than I have in the past. I’m only on Imuran (aka, Azathioprine) to treat symptoms. I’ve run the gamut of Mestinon, prednisone, and IVIG. Imuran seems to be the path that’s working for me.

After completing my strength test today, the neuro sat back, looked at me, and had teary eyes and commented that I’ve come a long way since this time last year. Yes, it has been a crazy, long journey. I’m now able to do light exercise (cardio and hand weights along with some general resistance exercises). I’m happy about that. He also noticed I’ve lost a few more prednisone pounds since I last saw him. I’m VERY happy about that! I gained 65 pounds while on prednisone! I’m working my way to losing 45-50 more pounds to get back to my normal and comfortable weight. As long as I can still use my stationary bike and my weights, and stick to a decent diet, I should make it there. If I make it in a year, that would be wonderful.

On the flip side, I’ve been battling envy and jealousy lately over some people in my MG world who have the luxury of travel, vacation, and just generally doing cool things they enjoy with friends and family. Most of these people have a lot more in the way of financial resources to be able to do such things. Some on disability have spouses  who are the primary breadwinners. It’s challenging for me sometimes because it’s just me. I do ALL of my own chores, errands, cooking, cleaning, personal planning, self-care, oh yeah, and I still have to make a living. Dealing with all of it on top of chronic illness (MG isn’t the only chronic beast I battle) is very challenging. I can’t delegate to others because there’s no one to which to delegate. If it has to be accomplished, I’m it.

I try to keep my thoughts and feelings to myself around them—the lucky ones— but sometimes the evil green-eyed one comes out revealing my desire to have the help I really need at times and to be able to go out and truly enjoy the world the way I used to.

With today’s successful neurology followup, I’ll have to make peace and enjoy calmer MG days. Those days will have to serve as my “vacation,” my “exotic travels,” and my general “good times” until resources catch up.

Blissful silence!

Three days before New Year’s Eve, I decided to make a trek to a town ~3.5 hours from home to visit the Shrine to Don Pedrito. I had never heard of him until ~ a week prior to the trip. I was in a local grocery store picking up a few things. A couple of saint candles were on my list.  I searched and searched and didn’t see the candles where they’re normally placed. I asked a store worker and he went to the same place I had searched then asked a manager about them. The manager said they no longer carry them. No explanation. I’m not sure who looked more shocked, me or the worker. I paid for the items I did grab and left. I decided to go to another store in the same chain to see if I could find the candles I was seeking.

Find them, I did. I picked up one of La Virgen de Guadalupe and one of La Virgen de San Juan. I also randomly picked up another candle because I thought it looked interesting. When I got home and took them out of the bag, I looked more closely at the random candle. It was of Don Pedrito. Underneath his name it reads “Vida y Salud” (Life and Health). This has been a reoccurring thought for me over the last few weeks. I decided to look into who he was. It turns out he was a curandero in South Texas! Yes, he’s in his grave and has been there for many, many moons, but I am of the mindset that some people have a way of reaching out and touching the world from the beyond. No, not in a creepy, horror story way, but in a more divine manner.

I immediately decided that I would try to find his resting place and see what he was about.

I drove down early that Saturday morning. Found the place without any difficulties. As I parked out front, I thought the shrine, which is surrounded by a small cemetery wasn’t much to look at. I opened the door and was met by a wonderful wall of energy that I can’t begin to describe. Right in front of me was the Virgin Mary standing on an altar with Jesus on the cross on the wall behind her. To her left was La Virgin de San Juan and to my immediate left was a statue of Don Pedrito and his grave surrounded by flowers. It took me a few minutes to overcome the initial energy shock/surprise to walk all the way in. I said a couple of prayers/paid my respects at the three altars and placed a few petitions on a prayer wall for myself, family, and a couple of friends having a difficult time. I sat in there for a while and realized how amazingly quiet the space was. I’ve only experienced that level of quiet/peace three other times. It was mind blowing! I didn’t want to leave. They just need to have a restroom and a little kitchenette for me and I could seriously live there!

I left the shrine after a while to drive back home. I was in the calmest state I’ve been in in eons! I’ve also noticed that I’ve been experiencing the same inner calm and peace since then. Even my myasthenia gravis symptoms have eased up a bit. No one has set me off since then. I’ve encountered several situations where I could’ve gone off and strangled a few people since that day–especially at work. My hands have not yet met any deserving necks! Perhaps I should visit Don Pedrito and Mother Mary once a month for a little calming session.

No desire to punch anyone in the face so far this year. 🙂