Last night's ride to the Bay Area came with a cost but it was paid and we kept on going and arrived after a total of 6 hours driving.
Time to eat!
peace-
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As of right now, 9:16 PM on Friday night, I'm working on relaxing at the end of a fairly tiring day, yet not a bad day. The highlight of today was taking any for a walk over at the park that's close by our house. Missy had a friend sleepover last night so the two girls along with Josh and my parents and I all went over to the park, along with Annie. I took any for two loops around the entire park while the kids rode bikes in the scooter and explored the park in the creek that runs through it. A landmark for today is that my dad wrote my bike over to the park and that the first time he has been on a bike in over 20 years, according to him; that we'll see how he feels tomorrow...
the temperatures were in the low 80's and I had plenty of water with me, so all in all I think everything went very well. I ran my chair until it had barely any battery life left and was able to ride home with it as well.
No attacks today and no crashes; after being out for as long as we were at the park, I thought it was quite possible that there might be a crash or a hit that would take place simply due to my being in the sun and the heat and being "on", but I am blessed to say that nothing negative transpired (other than a lady walking to small to medium size dog's who did not keep them on a short leash when they passed by me and Annie; one of the dogs continued to bark but did not come close to her while the other dog lunged at her four or five times without the owner doing much about keeping it away from any. At one point I was able to reach past Annie with my left arm and knock the dog about 4 or 5 feet away; and the lady kept walking, never said sorry, never apologized, nothing. Space space here I am protecting 100 pound dog from two 20 or 30 pound dogs, when in fact I'm actually protecting the two dogs, in reality. I'm pretty sure if I had let Annie go or if I had given any any length of leash at all she would've made short work of the two obnoxious pets.)
Well, I've been writing for about 30 minutes now and I'm tired. More later --
peace
So it's 2:37 in the morning Wednesday morning and I woke up from a very light sleep about 45 minutes ago and I'm waiting for some of the medicine that helps me sleep, to take effect. It seems, over the last two or three weeks that my body sweats have been very pronounced during the night and morning while in bed. At first I thought that had directly to do with what I was eating just before going to bed but there were a number of nights where I didn't have anything to eat just before going to bed than the food that I had had which had been consumed four or five hours prior to going to bed, so I guess that means I have no idea, yet again, as to what the hell's going on with my body. I would much rather be in bed dreaming and resting right now than sitting here at the computer typing. Praise God for Greg Kopchinsky and his gift of dictation software to me, for with out it at this specific time, I wouldn't be able to be typing or focusing my thoughts in such a way as to be able to type.
I did have a crash this afternoon, actually this evening. Just as dinner was starting, I could tell that things were slowly headed south (as opposed to quickly), so I poured some potassium and drank that and went ahead and had dinner with my parents and family and Sean O'Brien who had come and was visiting for a good part of the day. By the end of dinner it was difficult for me to focus and so Joshy helped me walk into the house (we were eating outside). Shortly thereafter, I was in my chair and could feel all of my strength and my energy and ability to focus, ebbing away; it is in some ways, surreal to experience some of these attacks; I know they must look completely different to the person standing by and watching it. So far to date, I'm too embarrassed or vain to want to video record what I look like when the attacks happened, though I know that it could quite possibly be a very effective tool once we find a doctor who will take me on and take an interest in seeing my disease managed in a more efficient manner than just living day to day, waiting for the hits to come; in some cases literally counting the minutes before all hell would break loose.
Yesterday morning, Tuesday, I slept in fairly late but was able to get up in time to go to my 10:30 physical therapy appointment in Antelope. Things went well during the appointment, although I chose not to do any of the weights or exercises just because I wasn't feeling confident on how the rest of the day would turn out to be. Following physical therapy, my mom dropped me off at home and she left to pick up Missy from school and my dad and I got out my rifle and shotgun in prepare them for taking to the gun range in Rancho Cordova. My friend Sean O'Brien came over and he, along with my son Josh, went with us. We stayed at the range and shot for couple hours with my rifle and another .22 rifle we rented there at the range and had a pretty good time, all in all. The only exception that took place with me was that a person standing two booths to my left, shooting a higher caliber rifle, whose ejecting shells from his rifle were kicking out of the gun at a fairly good speed, (most of the time landing on top of Sean's head or my platform, or even further down away from us) came towards the end of our shooting time when the gentleman shot the target and the ejected shell flew directly towards my face and lodged its very hot metal casing in between the skin of my left eye and my glasses, so it held there for a moment until I could yank my glasses off and get the shell casing off of me. After doing so, we took a look at it and I have a couple small burns and bruises where it landed but I'm so, so very grateful that it did not actually hit my eye which was just a quarter of an inch away. That was a little scary and it definitely was a lesson as well, in that, when I go shooting the next time I will make sure that I have large piece of cardboard on my left to prevent any shells from popping over from one booth to the other.
It is now 3:08 AM and I'm going to try it back to sleep.
Today's crash is the first in the past five days, so in and of itself, that is good news according to my daily life.
Where to begin? It’s been so long since I last posted. It kind of snowballs on itself, in that I feel frustrated and bad that I haven’t written and caught up here that I put it off, waiting in some sense to have more information to write and share, but the reality is that I should be just journaling daily and that would solve the issue. Of course, now that I think more about it and remember how I have been over the last couple weeks, I realize that I’ve had numerous hits/attacks that have interrupted all daily flow and plans, and I need to keep that in mind before I continue to rag on myself for my blogging absence. Same old, same old, I suppose.
Well, it's taken a long while for me to be able to get the new speech recognition software "Dragon NaturallySpeaking 10" installed onto this computer, because I was unfamiliar with the sound card layout of this computer; none of the plug-in locations on the sound card have any labels so it was a matter of trial and error to find out which one was the microphone input. Success. Of course, by using the recognition software, I'm likely to be much more verbose than I would be if I were just to be typing... :-)
My parents have come to visit for this week; they were in Oregon all of last week visiting a very dear friend of theirs who was celebrating her 97th birthday. On their way home to the Bay Area, they decided to come by our house and hang with us for the week. I expect that this week will be a pretty mellow week because we have no major things planned and no major accomplishments to be reached. Cc garden is doing really very well in the backyard; she planted corn, watermelon, tomatoes, squash, and pumpkins and all are growing just fine. It's the first time she's ever had a garden of any substantial nature, so she's very excited about this end we are all excited to see everything growing, to see the "fruits of our labor", so to speak. I need to post some pictures of our little garden... maybe I can get that done in my next post.
As for me and my health, over the last week or so, it seems that I've been getting between one and two days in between attacks which is better than no days in between attacks, but I sure would like to have more time than that in between the hits. Most of the time, were able to discern what the triggers have been for the attacks, but not in every case.
It’s 10:35 and I’m going to get this one posted and then see about another more complete one tomorrow.
Peace-
Today was a gift, in many ways; of key significance, no attacks and no crashes. Following up to that, Missy gave me a wonderful choker/necklace for everyday wearing, I got to go on a shopping run with CC to Lowes and I got some neat one-on-one time with Joshy, just cuddling and listening to music this morning. On any given day, just one of these would in actuality be a treat and blessing for me, but to include them all in one day was truly a blessing and gift, in my opinion.
Yesterday afternoon was a very good time, in that we went to our close friends’, Sean and Tiffany, who live in Davis. We spent the better part of the evening there and, though I did crash, the evening was not destroyed and I was able to rest/sleep off the crash until it was time to go home and they got me out to the car and we left with no casualties on my end and the embarrassment was lessened due to the closeness of friendship and our 30-some-odd years of friendship with Sean. We all had a good time.
I’ve found some White Stone recordings and am trying to lift them from a 4 track reel to reel tape using a 2 track machine running at half speed. Sorry Mike, for taking so long to accomplish this and Sam, surprise…I was hoping to get them done and just email them to you, but it’s taking a long time to get done.
And just for my own record, Merrill Osmond of the Osmond Brothers (yes, the originals) had one of the very best “rock” voices on record, again, in my opinion. Great *rasp* when needed and solid pitch and melodic range.
So, that’s it in a brief note. I know I’m forgetting some things I would like to include, but at this point, it’s a no-go for tonight/this morning. Praise God for a good day spent.
peace
Yesterday closed with a very tough attack which began with a series of muscle-locking, very similar to a cramp, only these are in multiple locations simultaneously. Hurt like hell. The attack involved acute spasms around the shoulders, chest and abdomen. I’m beaten up.
Missy was able to help shoulder me up the stairs and get me into my bed where the chills set it for their turn in the attack.
I did rest/sleep alright but am very tired and sore today. I went to PT this morning and we were unable to do any full assertive stretching and we stopped early to give me some K+ while in the room and wait until I could walk again before leaving for home.
I’m staying down today in the black chair and will try to relax and watch some big screen.
…ow.
The first thing that came to my head when thinking of a title was the question we are all likely numbed to, found on spam mail and coupons and different postal papers; “Have you seen me?”, regarding to a missing child or youth. Hopefully, there are many of us who are not numb to it, but I seldom look at these advertisements and it scares me to think what the parents and siblings must be going through. Sorry to begin this post so dark, but it struck me a couple days ago when I went out and brought in the mail and I’m hoping to focus my head and mind long enough to write something lyrical about it. We shall see. Also, I’m trying a new font called “Kristin ITC”. I kinda like it.
Please send me an email telling me which font you’d prefer or would recommend that is not “ordinary and boring” :o)
This font is called “Forte” and I’m going to use it for this next paragraph. Before sharing about today, I need to relate yesterday’s activities; Missy began her summer school courses at Sac State and she has one class in the early afternoon this week. Joshy and I went with CC to pick up Missy from class then we went on an excursion to the American River, which is right beside the college campus. We brought my chair and some food for me and drove down to a parking area near the shoreline and then went exploring. I think we all had a good time, but my part of the trek came with a physical price, in that, most of the areas they wanted to walk and any areas near the water are covered in river rocks and taking my chair 4-wheeling beat the daylights out of me by the time we were done. I wasn’t certain how I would feel today, but I was thinking I might be sore…and I was right. I’m sore.
Now we are on to “Lucida Handwriting” (computer font-based cursive which looks really good!). So, following yesterday’s adventure was a smaller hit which was a combo trigger of me beating myself to a pulp using the chair and river rock combination and my choice to not abstain from Baskin Robbins on our way home. The sugar rush combined with my agitated physical state brought on a smaller hit. I went upstairs after we got home and stayed in bed for the remainder of the evening. I took some liquid potassium (K+) upon arriving home and it shut down the attack progression within about 20 – 30 minutes. It is nothing short of confirming when you analyze my attack symptoms and then witness the nearly immediate changes once I get the K+ into me.
So, I get up and go to PT this morning and am realizing on the ride over that I will not want to do any machines today; just go in and do the muscle stretching and massage and see how I do. Mark did an effective job of convicting me on my sugar consumption, which I know is an unsecured aspect of my battle with this disease. The Methadone I take creates a “sweet” craving that hits at different points during the day and that craving is terribly hard for me to control, yet if I don’t, I will suffer either a diabetic attack or crash , or I will have an attack from a resulting K+ imbalance. *sigh* Anyway, PT went well but we stayed away from much work on my legs and lower back. As my aunt and I were preparing to leave from PT, I was aware that necessary work had been done to some already angry muscles in my lower back, hips and ribs and I chose to take some liquid K+ before driving away. Once we got back to my house, walking was initially becoming painfully problematic and my goals for the day became quite simple; avoid an attack, period. It’s now 6:38 and so far so good, though I’ve taken an additional amount of pain meds to block out what would become tensing pain. There have been 4 or so sweats that pour sweat all over, but no spasms to follow them so far.
Joshy and I watched “Galaxy Quest” this afternoon while CC and Missy had some mom/daughter date time together. Galaxy Quest is one of my favorite movies and Joshy thought it was hilarious. Mission accomplished.
Ugly heat today and it only got into the upper 80’s…this oncoming heat-spell will not be a good thing for me if I am to be outside the house for any reason.
Ok. Writing and keeping my head up, focusing is becoming laborious which means I’m losing my energy battle and I should post now so I don’t end up trying to post at midnight or some such hour…
I want to humbly yet directly ask you to please continue to pray for us; for our finances, for our communications, for His healing and restoration, for wisdom and discernment. There is SO MUCH that must go into our planned trip in October to the Periodic Paralysis Conference in Orlando and my ability to stay focused has been compromised by my desire and actions to experience less pain…
Peace-
Well, once again it’s after midnight. *sigh*
This evening included a mild hit (more lethargy and very mild paralysis than anything else) but I am clueless as to why. Yesterday was the same and Thursday evening, around dinner time as well. I’m thankful they are not more significant hits, but…I’m getting tired of swinging at pitches and my family is tired of running the bases and hoping I won’t get hit by a pitch…
I was going to go into detail of what these hits are like and how they feel, but I’m realizing I’m tired and need to call it earlier, for once.
Tomorrow’s plans include going to the 11:15 service at church and going to a friend’s post-grad BBQ close by. I expect a price, but I’m hoping it won’t cash in until after we get home from the party; I don’t want to be a prisoner to this disease and stay home all the time, but I also do not want to be a distraction or spectacle while visiting or attending a gathering or dining out.
We do believe that God is making a way for us to go to Orlando this October and I know I must lay this trip, its costs, its prices and its experiences at His feet, nearly daily and not worry about how it will all come together. Your prayerful (and ANY other type of) support is and will be HUGE to us; thank you so very much for interceding on our behalf however you can.
2 minutes to 1:00 AM…
“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
In This Body: Living with HKPP through Faith and Love of family & community with Wade Odum This was recorded on March 19, 2024 On today...
