Monday's & Sunday's review

Monday, March 30, 2009

Being unsure how to begin some of this re-cap, I will start with today and work my way backwards, I suppose.

I woke up this morning in less pain than I thought I would be in otherwise; a good sign and refreshing as well. Today came and went without an attack or crash, and that's good news. I have added "Crash" to my HKPP vocabulary. When I have an attack of a paralytic nature or of muscular spasmatic/cramp nature, I refer to them as a "hit" or an "attack", but when I am referring to a crash, it is generally related to, more often than not, either ingesting a higher level of sugar (a diabetic reaction) sodium, but not enough to trigger the next level or "hit". For me, I would describe crashing as having a matter of one to two minutes time to get myself into a chair or on a couch or a bed and prepared to go to sleep because my body is shutting down or crashing. Crashes also include mild isolated muscle spasms, profuse body sweats, occasional leg, foot or finger cramping and an inability to communicate with my eyes or mouth/speech. Sometimes I can make some vocal sounds (groans or brief "Mmmm.." sounds, but each crash, attack/hit is different from the next. I typically end up, more often than not, going right to sleep and I will sleep for five to seven hours during an average crash.

Today's breakfast was 2 scrambled eggs with two pieces of toast that had salted butter and some blackberry jelly on them. Also, included in the scrambled eggs was less than a quarter cup of Lucerne mild cheddar cheese, and a third of a small chicken breast (diced) that had been grilled (plain) the night before. I didn't have any snacks, but for lunch I had a turkey leg and a large glass of a Cherry/Berry/yogurt smoothie. At dinner time, I had a baked potato with some butter, some ground beef, some mild cheddar cheese and sour cream. My desert was a small portion of a pumpkin pie-type of desert, which also included some whip cream on top (I married an incredible cook!). Why all the menu diatribe? Well, if there is one thing in particular that I have learned, and we have learned, in this battle, it's that my diet is a critical factor in both triggering an attack/crash and rendering my system vulnerable to a trigger that would otherwise not set me off. The things we have to watch are my sodium intake, carbohydrate intake, direct levels of sugar and it byproducts (sweeteners), and meal sizes or portions.

Sunday, CC and the kids and I all got up in time to be able to make it very near the beginning of the church service, which is very good for us, in that it is more common that we show up 10 to 20 minutes late for the service. Anyway, we came in and we went right to the location where I have been normally sitting; in the back of the sanctuary, right beside the rear center camera booth, where the head usher had offered a place for my chair to be. And when it's not packed, CC and the kids can sit directly in front of me, or we can have even a folding chair pulled beside me so that somebody can sit with me but still be out of the aisle. This is where I have been positioned since we restarted our relationship with Capital Christian a matter of months ago. There have been times in the past where an older lady usher, who is one of the two ushers for that particular set of doors, had expressed frustration that I was taking up their space, where they would normally sit in two folding chairs, directly behind me. She would remark that they were given those seats, allocated seats, to sit during the service. Even though the back pew on the other side of that door way is generally open (5' difference), she felt that they were to sit in those chairs and my being there was not appropriate, end of story. Well, this particular morning (ok, not this morning, but this past Sunday morning), that situation escalated and it was very maddening for me. When we came in to church, I went straight in and went over to the doorway I usually go in through and the doors were open so I rolled in and got into position as Josh was with me. CC and Missy were looking for another pew to sit in because the one in front of us had people in it. While Josh and I were figuring out how to get situated, the female usher leaned over and said, in a out of patience tone and voice, that it was just not appropriate for us to sit there and it's not right. We should not sit there, that that space is for ushers only and we do not belong there; it blocks their view. After telling Joshy to pick up our stuff and go right back out, I turned my chair around (even though some folks were walking in to take their seats) and worked my way past them and went out and located the head usher who had helped us in the past and originally located THAT spot for me to sit in! I briefly explained what it taken place and what had been said. She walked over to the doorway, as we went back as well and she talked to the woman usher and then she told me to go ahead, and park my chair and I would be fine. So, Joshy and I began to get re-settled again, and once again the gal came back down in front of Joshy and me and leaned over so that I could see her very clearly and said it's absolutely not right for me to sit there and that she's going to talk to the senior pastor about this because what I'm doing is absolutely wrong. At that apologized for the bottom of her heart and her voice was cracked ahead point I had reached the end of my patience and composure and was very angry; not in the mood to even stay in church at that point. I was flying through angry thoughts and thinking "...there aren't very many places that I can sit in church, let alone in most churches or even restaurants or theaters...!" and the frustration of that reality welled up inside of me at the same time of the frustration that I have to be sitting in this chair in the first place, that I don't have the ability anymore to sit in a pew or folding chair for any real length of time. So all those things came up, and I was angry. As we were going back around to leave again, the head usher was walking back in to make sure everything was all right and I told her it was NOT alright and that I was done with it at that point, and that we were going to go sit someplace else. And so she pulled the usher out to talk with her, AGAIN, but I don't know exactly how that finished out. Joshy and I rode over to the very back rear corner in the Sanctuary, where they do have allocated space specifically for handicap folks, and it unfortunately, as you might guess, is the worst seat in the house and not the best sound either. Also, the whole area where we now were is also where many of the moms with kids come in and sit; Unfortunately for me, one of the younger-aged family cultures that attend that hour of service, rears their children very differently than we reared ours. Being in that area was much more frustrating because it's very loud and very distracting and there is little monitoring of the children as they bounce from pew to pew and up and down the aisles. So, for us to attend the church, I need to be able to be located in a place where I can focus on the pastor and focus on the worship and not be distracted.
And as it turns out, that particular usher was/is simply not willing to let it go. So, as Josh and I entered over to the other area to sit, the anger really locked on, and tears began to well in my eyes, which is a definite indication that it has moved past me being able to think through my anger and apply a reflecting management to just think it through. Just as that happened, Joshua, who was holding my hand and rubbing my shoulder, said that I'm now sweating and immediately I realized that I had to get a handle on the anger somehow, otherwise I'm going to have an attack here in moments, because that process had just begun. CC and Missy came over after having watched a little of it but didn't know really what happened. When they came over, we all sat together in that one area; C's sat next to me through the whole service and the kids sat directly in front of us. She really helped to calm me down, and helped me to get my perspective back and coached me through the process. The head usher came and found us and apologized from the bottom of her heart and her voice was cracking while she was speaking to me so I knew that she was very upset as well and was feeling ashamed of how this whole thing had gone and how we/I were/was treated, specifically. I really appreciated her words and her candor, and her heart. She expressed that the following Sunday, those ushers will not be at that door, so my understanding is that she is moving them to a different door and there’ll be somebody else at that door and she will explain to those people that will be ushering that location at the 11:15 service, that I will be there and that's where I'll be seated, per her instructions. Now, here's the God "thing" for blatant for that morning...Pastor Cole's message was entitled "Anger" and that's what he spoke on for the morning...I actually chuckled in the midst of my anger when he spoke that. Okay, so when all that was said and done, we got through service, and then left from there and decided that we would try to do just a special family time together over lunch at Fresh Choice, though I wasn't very hungry. I didn't eat very much, plus I did not bring my salad dressing from home like I would normally do, so I knew that I shouldn't have very much salad dressing, anyway. As it stood, the meal came and went without any real problems, with the exception that as we were leaving, I was aware that my muscles were aching, much more than just the joints and the muscles were much more tender, also an indication that things are on the verge of going the wrong way. Once we got home, I hadn't been in the house more than 10 minutes before I knew that I had to lie down and get into a chair someplace quick. Moments later I was asleep and slept from 1:30 until 6:30. That kind of sleep is not restful. I am asleep, but was sweating a lot and I was aware of my surroundings even though I couldn't open my eyes. I had my oxygen on but I didn't have my CPAP on because I wasn't upstairs in the bedroom. So, several hours passed by without me having anything to show for it. Not even rest from sleeping. CC and I were trying to figure out why I crashed like I did, it was Joshua who spoke up and said, "You know what I think? I think that you had to crash because your body was weakened while we were at church when you were dealing with the usher and your body stayed in a weakened state so that when we went to Fresh Choice, that it didn't take much of the raw ingredients to push you over the edge." CC and I looked at each other and just shook her heads and gave him due credit for being a very smart and perceptive young man, who is very much in tune to his daddy.

I think this one is done for tonight, because I am very tired and can hopefully go to sleep soon.

I will share what happened on Friday and Saturday, in my next post.
Peace