And Then There Was Monday

...and a reasonable Monday it has been.  No hard crash or major attack to speak of, but a quick, smaller hit that literally took my feet/legs out from under me around 6:ish or so.  Once again, who's there to catch me?  CC.  As she had passed by me and asked if I was alright, and just as I was able to say "no", she caught an arm and Missy came around and grabbed the other while Joshy pulled a chair to underneath me and down I went.  This time I did not lose my vision but did have the brain-fog which is common with potassium changes, drops in particular.  The got the liquid K+ into me very quickly because hardly any other symptoms followed suit.  A matter of minutes later I could feel my body's muscles all stiffening up and becoming sore and angry.  My jaw seems to be another localized point of susceptibility during the attacks now and becomes hard to move and open, plus, it just plain ol' hurts.

While I was doing my usual pondering and self-psychoanalyzing about "why this hit and like this" and she reminded me that today has been a good day in many respects, but it has been a very emotional day as well.  It's not appropriate for me to go into today's emotional details, but in a general sense, here are some of today's realities: a friend is suffering and feeling alone, another is coming to the end of a very long journey, another friend and I have reconnected after quite some time, and also, we have some life changes ahead of us that will require intense attention shortly.  No one thing from this list triggered the hit, but we feel that it was the combination of intensities that shoved the adrenalin into gear, causing a quick shift in the electrolytes and either pulling K+ out of the muscles or shoving it in (I can't really remember right now the order in which they all go, but they are all cellular dominoes that fall when tapped and they each effect the next.  Wow; I'm wordy, huh?

One of the specifics that I can share from today is that I learned that there will be another HKPP Conference this year in October in Orlando, Florida.  Of even more significance, there will be an internationally known and recognized doctor who treats HKPP patients speaking at the conference and he will be providing free genetic testing for those who can attend.  Even now, as I reread what I just wrote, I sit here and wonder how in the world we could pull it off to be able to go, participate and then, make it back unscathed to a significant degree.  We had planned to go to the 2007 conference but wisely realized that my condition was much too unstable to make the flight and conference work and worthwhile, especially considering the costs at that time.  I guess I just felt that I should share that because, well, it's going to take immense prayer and discernment to know whether or not I, and my family, are supposed to go and then more of the same to figure out how we could even afford to go, etc.  Let me also say that I DO know that God does provide and His funds are limitless, but I also believe that if we are not prayerfully seeking His face and His direction and listening for His voice amidst the sounds of our daily life, we can, with good and warm hearted intentions, mistakenly insert our own voice or agenda while waiting on His.

I've given much in the way of prayerful intercession needs and I beseech you to please pray for me, for us and for those alluded to, who are in need of Him, even now.

I don't want to close this out without conveying this; Gary, I love you brother and I miss you. But I'm looking forward to staying connected with you now; this disease and its attacks have truly opened my heart and my eyes to my family and my friendships in that they are more valuable to me now than they have ever been and than I can really comprehend. You are precious to me, Gary.  Thank you for calling me friend.  I'm humbled.

Foods today:

• Breakfast: several pieces of grilled steak, marinated w/o salt
• Lunch: a chopped steak salad with Romaine lettuce, garbanzo  & beans (reduced salt), and TJ's low salt salad dressing.  Included no salt corn tortilla chips from Chili's with some sour cream and 1/2 a tablespoon of Pace mild salsa.
• Snacks: 2 Cutie oranges
• Evening: a slice of CC's banana bread
• Drinks: 4 or 5 16.9 oz bottles of water [No sodas]

Ok, now it's time to be done.

peace-

Easter Sunday

We got up in time to make it to church this morning, though we did not get there prior to the service beginning; a weekly challenge of ours that we seem to fail nearly every time, *sigh*.  I took a few pics and posted them here (below) because I was struck but the dynamic lighting of the service, yet, if I am honest, I was clearly distracted by it as well, which is counter-productive in terms of a worship service or setting.  Indeed, at 11:15 we had a full orchestra and full choir as well as the Doug Reid Band leading in worship.  I felt that this morning was more-so directed at newcomers and the Holiday attendees rather than the established family.  It's certainly worth noting that it was a full house for that service.

After church we eventually made it out of the parking lot and back to the freeway and then we went to Chili's for our Easter Lunch...sounds kind of anti-climactic, but we did have lunch together and that was more-so what Easter lunch is about in my opinion.  On the one hand, it would be really neat to go someplace fancy and have an expensive high quality tasting lunch with as many family as we could gather, but then also on the other hand, it shouldn't matter where you got to eat as long as you are with your family.  So, we were a little over-dressed for Chili's, but we felt good to be out, eating lunch together.

Worthy of noting here in my blog is a realization that I came-to within the past couple weeks; when the disease picked up speed a few years ago, I fought hard to remain in control of my routine, my job, my responsibilities, my friendships and relationships and my life and self esteem.  I fought so hard that I lost perspective on each of those things because my focus during the fighting was always on my symptoms and attacks and hardly on living and making the best of me in the midst of the circumstances.  Now, in sharing this and realizing this, I am not beating myself up about it or condemning myself over it, but recognizing it so I can own it and keep going.  I realize as well that this may just be for me and not something others might understand and that's perfectly cool too because I know that I am both the author of this and the reader of it as well.  *[heavy duty sweats just came and went in a matter of a few minutes.  bleh.]  Specifically, I realized that the main reason I backed way off from trying to maintain my foothold within the Audio and Media Production fields was and is that I feared being wrong.  I feared that my memory would fail me in crucial moments and in important conversations and I would feel ashamed of my memory losses and current inability to concentrate and successfully focus.  I think much of it is ego-based and vanity while another part of that soul within me who wants to please and serve yet now feels that I may not have or remember the words to share that someone may need to hear in a moment of exchange.  {more head and neck drops while I'm trying to focus my thoughts and write this out.  Grrrr.]  I shared this with CC over lunch a little bit ago and she encouraged me to realize that I have more to give without having to drive around to do it and that got me thinking about this blog and my Facebook participation and how I need to keep myself involved for a variety of good and healthy reasons. [ok, it's getting harder and harder to keep typing and thinking now]  I need to stop and rest, I've run out of *fuel*.

Hi. this is Missy, Wade's daughter. He is in bed right now, resting after a unfortunate little crash with body stuff. Soo....... yeah. he will be up and moving tomorrow (I think). Ok. Bye!

Easter 2009

Easter 2009

Easter 2009

Easter 2009

Easter Sunday at Capital Christian Center, 2009; full choir, band and orchestra...and us.
May God bless us all in spite of ourselves.
He has risen, He has risen indeed.

Saturday Re-cap

Today began unremarkably, health-wise anyway; CC took Joshy to his gymnastics class so I slept until 9:30 AM or so, and then shortly after 10:00 AM, Missy came down stairs and began her day as well.  She worked on some of her morning responsibilities while I ate some breakfast (1 and a half eggs with some cheese and a piece of potato bread toast with 1/2 a tablespoon of blackberry spread.  The morning was really, pretty much uneventful for the most part.  After eating, I realized that I was feeling nauseous and weak.  I wasn't sweating though.  Anyway, by the time CC came back home with Joshy, I was feeling very anxious and somewhat panicky that my chest was constricting, deep breaths weren't an option and my legs and hips were very week and undependable.  She got me some meds to help shut it all down but it took 2 doses to manage it, and even then I was still very aware that *something* was not level within me.  Add to this that my blood sugar has been remaining in the 180 - 275 range for the bast several days and we have some idea of a culprit.  Also, my bp has been running high again (150-180/90-101) without any clear cause.

Today was a down day and I feel like i missed out on time with my family and even my dog.  This is when the disease is at its most effective cerebrally in that I become bummed out and even depressed with this kind of scenario plays out for an extended period of time. Prayers for good sleep tonight and for the muscles to relax and mend and for a remarkable difference in my soreness and strength (in a positive way) come tomorrow.

Maroon 5's "Wake Up Call" is impressively put together, musically.  Pass on the video, but find the tune and listen to some nice, tight music that makes your neck work.  :o)

Time for bed-

peace

A Movie Clip

 

Ok, so I'm supposed to be going to bed, but I just had to check out this other feature in Windows Live Writer which will allow me to post a video (this is not my dad even though the title says it is...) in my blog as well!!  You must watch the whole video, it's only 9 minutes but you'll end up laughing till it hurts, more than likely...
This is very cool! Expect more video clips from now on. :o)

Ok, I done.

Saturday Morning :04

 

So it's 12:04 AM and I'm still trying to get my mind back after watching "Seven Pounds" tonight with CC.  Impressive and unique movie that is also very intense and emotional; that's all I should say in case you haven't seen it but think you might check it out.  My remedy?  Watching some of WWE Friday Night Smackdown (Professional Wrestling).  Works for me.  I'm not back yet, but it is working.  I decided to post something after tucking the kids into bed and then checking my email one more time before staying down for the night.  I saw a link that I was not familiar with, called "Blog This"; it is in my Internet Explorer tool bar so I decided to check it out (later hours often brings out curiosity) and it opened a feature, Windows Live Writer" which will apparently post directly to my existing blog, so, here I am.  It appears that I might have much more in the way of text options if I use this to create the post; we'll see.

No hits since Tuesday, praise God alone.  Both attacks were pretty un-fun, so to speak, but they could certainly have been much worse, so I'm still thankful for not experiencing a deeper level of pain and recovery.  Sometimes it's not so easy to be unafraid of the next day's inclusions, in that, I don't know what tomorrow will bring, i.e. an attack or crash or stiffness or malaise or anything else I do not want to experience, but I know that I have to face tomorrow full on and not anticipate suffering.  I need to expect life and touch the warmth of the love of my wife and children; that I must do every day, whether or not I feel good or even indifferent.

Another thing I want to include is that I don't know how many Facebook friends read this blog, but for those that do, I want to share that I SO appreciate your Wall postings and notes, so much.  I wish that I would feel like being more communicative and be on FB more often, but when I'm not feeling as well as I want to, I tend to refrain from interactions and connections which includes being on FB as well as even posting here in the blog.  Add to that, that my eyes take much more effort to read and see now than before, makes it very difficult to read, let alone write.  That's not so much me whining about old age eye sight issues or even diabetic vision issues because, according to the folks at Kaiser, my eyes are functioning as they are supposed to in regards to my age and diabetic screenings.  Of the more challenging muscles that have routinely been the first to "go" when the attacks and crashes hit, are my eyelids and my ability to keep them open as well as focus and control my eyes.  Even now, as I type these words, it takes several blinks per word or few words, and I have to work to keep them focused and oriented simply because I'm tired and those muscles have been hit over and over again.  I feel like I'm whining again...well, I hope you understand my heart in what I am trying to say anyway.  I'm going to make a more concerted effort to stay in communications on FB, but if, or better, when I fail, I hope you will understand.

I've been writing for nearly an hour now, so it really is time to be getting to bed even though I have a number of things I want to share here.  Another day has begun and I know I need to rest in order to take advantage of its dawning.  Peace.

Wednesday Night Quick

Wednesday, April 8, 2009

Another quicker post than not; today was attack-free but yesterday late morning, I took a hit while on the table at PT and the day before (Monday) I got hit in the evening. Today just plain-old hurt, sums it up.
We've been monitoring my blood sugar as well as my blood pressure and both have been elevated, leading me to believe that my system is much more fragile than it was weeks ago, and likely my potassium levels are all over the map since my blood sugar and bp are elevated.

Tomorrow is PT again...I'm going to go very easy this time on the stretching but normal on the muscle massage, if Mark is cool with it. It's such a two-edged sword, exercise and muscle manipulation (like massage), in that the muscles need to be flexed and moved in order to keep the exchange of electrolytes and oxygen flowing in and out of them, but move them too much or too suddenly and they react with a cramp or an attack. There is a definite invisible line that you know you have crossed but cannot see beforehand, that must be held in order to prevent more damage following an attack.

The venture to the mall on Monday went well but I ended up exhausted afterwards and then that night I got hit. It could have been because of the level of exertion or it could have been just the fragile levels getting out of whack.

I do want to note that it was my Aunt and Uncle who came to help me while I was at PT on Tuesday and they got me out of PT and home. They have been selfless in their care of me and of us as a family; always offering to help in way they can and always being in attendance of our family gatherings and kids events (when schedules would permit) and I don't think there has been but maybe one time that I was in an ER up here, that they weren't there with me or CC to support and help in any way they could (and we're talking about, between 15 and 20 ER visits in the past three years, I think).

Please be praying for tomorrow's PT appt. I don't want another hit again. My body needs more time to recover from the last two and I know I need Mark's help to work the muscles recently damaged from the last two hits.

Lastly, I had been letting my hair grow out a bit from shaving, to see how it would look coming in and what areas on my scalp would be visually problematic, from my perspective. What I saw frustrated me more and more, though I know that I have to be in it for the "long haul", so to speak, and not get discouraged by what I see in the process. The problem was that, every time I looked in a mirror, I saw a "crippled" old man who looked beaten and lost. Sounds dramatic, I know, but it IS what I saw and I hated seeing it. So, on the weekend, I suddenly remembered what had given me strength in attitude when I was recovering from my back surgeries and when I was being treated like a drug-user/junkie; I remembered a pro-wrestler named Stone Cold Steve Austin, whose "gimmick and personality was that of a alley-fighter, take no names-just kick butt, shaved-headed tough s.o.b. (It also happened that I resembled him at a distance). I adopted his DTA attitude (DTA=Don't Trust Anybody) and decided that I would not be a victim any longer and that I would not be taken advantage of anymore. Emotionally, I would hit first and would stand up and be counted at the first sign of conflict. So, with all of those memories coming back to me in an instant, I knew I needed to re-adopt a fighter's attitude and choose not to lie down when I get hit or crash, but fight and be proud of and respect what and who I see in the mirror. For me, that meant shaving my head again and trimming my beard/goatee so that I would resemble someone that I would not want to challenge at a glance. To me, it's about attitude and perspective and not allowing a bully like HKPP or Hyperaldosteronism to beat me on all four fronts (physically, emotionally, spiritually and intellectually/cerebrally) at the same time. Pro wrestlers always play to the audience, always wrestle or fight even when injured and they never stop pursuing their goal to achieve whatever belt or championship they are going after. In my case, I am my own audience and need to “play” in such a way that I feel respectable and know that I believe in myself to beat whatever I’m fighting. Due to the diseases, I have no choice but to fight while injured which, in fact, means to fighter more definitely and more intelligently with knowledge and wisdom as well as perseverance and determination. I’m not fighting for a belt or a title or championship; I’m fighting for my life. I’m fighting for my family. I’m fighting for my dignity against a disease that chips away at my view of myself with each and every single hit and crash I suffer.
Enough said for now.

More later-