“Where’s the STOP button?” is the question I’ve been trying to figure out for the past couple weeks now; the attacks have been pretty much daily with a few exceptions, though none of them have required an ER trip, thankfully, so I guess I can say that they have not been real bad attacks. I do most of my writing at night or in the evening which is also the *usual* time of attacks and or recovery from attacks.
I feel badly that I have not gotten caught up here in recent days. There has been quite a bit of life that has happened in the past several days and I will try to recount the notable moments. Before I attempt any recount of any memories, I did want to note that it does appear to me that I am watching the days pass by as the toll-booth operator watches the cars pass through, all going in one direction. I don't know about the rest of the folks who contend with this disease (HKPP), but I pretty much keep track of days and weeks by how many "good" days I have (good days = no attacks) in contrast to the days in which I suffer attacks. When I was able to hold a job, I relied solely on the calendar and I oriented my priorities according to what day it was and what time of the day as well. Now, it seems the only relevancy of what day it is, is based on whether or not the kids are in school or not, whether CC is off work and whether or not it is a Sunday and we are going to church. What the day holds for me seems to be subject to a number of variables, such as, am I stressed? Do I expose myself to the heat of the day by standing or walking outside for even a few minutes? Do I become angry? Do I become very sad? Do I strenuously try to compete in a video game? Do I eat something with a high sodium count? Do I consume something with a high glucose or carb count, etc. I've come to recognize these variables now as "triggers" which often dictate how the remainder of the day is going to go and they also are factors in my family's life as well, because when I suffer an attack, it has immediate and lasting effects on my wife, children, parents and aunts and uncles; it even stresses out our dog when I am in the throws of an attack. All of us, in fact, seem to have the attack, so to speak…you know what I mean. Yeah, so, it is now Wednesday, June 10th and we are 5 days into the kid’s summer time from school and (Time warp - it’s now 1:17 AM on Thursday morning…) I love having them home with me during the day. The only way to make my day be any better is to have CC home all day as well; she completes me… :o) I consider myself exceptionally blessed to have my wife and my best friend be the same person; I love being with her and having the four of us together is the only family structure that feels right to me. FYI: yesterday (Tuesday) and today (Wednesday) have been attack-free. I did crash yesterday after eating an early dinner but rebounded pretty well, all things considered. This past Saturday, we put on a informal grad party for Missy’s graduating from 8th grade and had some family and some friends here to celebrate. The main negatives for me were that we had to keep our numbers down so we couldn’t invite everyone we wanted, I didn’t get to see everyone who came because I had an attack less than halfway through what I thought was the party time and that Annie made an embarrassing error in judgment in being a tad bit hostile to one of my very good friends who was visiting for the first time…granted, she was muzzled at the time and she did not make contact with him, but her disposition left an impression (Mark now calls her “Killer”)…I’m still VERY sorry Mark. The story before that story is that CC wanted to create a patio-effect in our existent gravel pit, so within a week, she worked in the back yard every day during all daylight hours that she was not at work (pretty much) and we were able to transform the back yard into something very fun and comfy; complete with hanging tea lamps, solar path lights and electric mini-mini individual lamp lights hang around the dinner umbrella. The comments I heard were very kind and gratifying and they gave us a real sense of accomplishment. My mom came up a couple days before Saturday and was a real trooper; helping wherever she could and being willing to do anything we needed yet never crowded the process whatsoever As usual, she a was real blessing. There will be another Periodic Paralysis Conference this coming October in Orland Florida and I think we are going to make a run at it this time. They will be conducting free blood analyses of family members of HKPP patients and I’m hoping to be there for that for our kids and possibly even my parents as well. The hurdle in front of me/us isn’t so much the disease, but the cost of getting us there, staying and then flying back. I don’t know where you are in life at this point, as far as financial stability goes, but I know we will need help to make this happen and I know that I need to ask for any monetary help possible; the flights will run between $1,400 and $1, 1650 for the 5 of us to travel and then the hotel site is another $800+/-, so a rough total of $2,2250.00 to make the trip happen. That’s A LOT of money and not a lot of time to raise it in and this is the worst fiscal time to ask for anyone’s help, I realize. If after reading this, you feel that you can help us financially, please send me an email to v12pilot@surewest.net and let me know. If you are uncertain or sure that you cannot, then my only plea is, please intercede prayerfully for us as often as you can remember to do so, because without our discernment of His guidance, we’ll fall into error and try and control what is His to control and accomplish, should He choose to. Ultimately, I believe that if God wants me and us to be there for this conference, then He will make it happen because it is certainly within the confines of a described miracle at this point. I’ll share more on life in the next few days (hopefully) and will keep track of our trip-progress-potential as well. It’s good to be back and communicating again… w
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