This a my blog about my life and struggles with HKPP (a terminal disease); Conquests and set backs, relationships and the strengthened resolve of their survival.
Wednesday, December 30, 2009
Monday, December 07, 2009
Saturday, December 05, 2009
Well, It’s Been a While…
Well, it's been quite a long time since I have posted anything written to the blog and I'm sorry that it has taken so much time for me to get my thoughts together to post again. Some incredible things have taken place since we returned from Orlando this past October, and in addition to those incredible things, I was challenged to seek out my motives for writing all that I have, into the blog. The challenge to do so was from one of the purest hearts and someone whom I respect deeply, so I know the intent was not to cause me any discouragement whatsoever, but to learn that much more about myself. Since this disease kicked into gear in 2006, I lost a lot of what I perceived to be my physical identity;
I lost my job
I lost my career
we lost our home
I lost my drivers license
I lost my truck
I lost my independance, to a significant extent.
…and without my license and my truck, I quickly lost touch with the majority of my friends. By no means do I think that any of my friends did not, or do not want to see me anymore, but the convenience of being able to step into my truck and drive to see someone was removed and with it a major motivating factor from the bulk of my relationships. Under the circumstances, it truly is nobody's fault; no one gave me the disease and no one made me get sick. Pretty much all of my friends either have jobs, families, school or all three and I know that it is very difficult to break routines just to go catch up with somebody, regardless of who they are. There's only one reason that I am sharing all of this with you, and that is because I realized that I've been using the blog as that friend, that embodiment of all of those different friendships combined into a computer generated pen pal of sorts. I don't think that that is bad, in another itself, as a matter of fact, I think that it has been very helpful to me with great regularity. The problem is, well... that I am feeling tremendously better and I don't want to be talking just to a computer screen, I would like to be talking to actual people, in person. We all have those close friends that we feel that we can share our hearts, our minds and our souls with, and that's a very good thing because you know who you're talking to, that you're able to verify that what they're hearing is in fact what you are saying, and more importantly what you're trying to communicate. When I share here on the blog, I don't know who reads what, and as such, I have to remain guarded and constantly edit every word and punctuation point before I hit the publish button. So, there you go. That's pretty much it, in its most brief form. I still haven't figured out how to move forward with the blog in a way that will satisfy me, but I do know that I want to use the blog in a better that will keep my family and friends up to date on what's going on with me, at least all the things that are appropriate for me to share.
Now, as I mentioned above, I am feeling tremendously better since returning from Orlando, I would even go as far as saying that the trip to the Periodic Paralysis Organization’s Conference in Orlando this last October, was life-changing for me and for my family. Before going to Orlando, I would have attacks every day or I would have one very large attack that would last a matter of one to two weeks, with several smaller crashes within those 7 to 14 days and it would typically take me hours to recover from the attack or the crash, to the point that I could communicate effectively. While at the conference, I went into an attack (no surprise) and one of my pen pals from the HK PP listserv, who I had only known in person for a matter of hours, came out to see if she could help CC in caring for me and helping me recover. When she saw that I was taking liquid potassium combined with Apple juice, she explained to us that the Apple juice would actually become a vehicle for the potassium to not be absorbed, but instead, just be flushed out of my system like any other liquid. Her explanation opened our eyes to understanding why it would take me so very long to come around after an attack; because the potassium was being prevented from absorbing due to the juice. CC told me that she left to get her purse and when she came back, she brought with her a different type of potassium, known as a “fizzy”by those who use it. This type of potassium is effervescent it is very quickly absorbed into the system. I actually came around within minutes! CC called our Dr. back in California, that afternoon, and asked for a prescription change from the liquid potassium to the fizzy tablets, and my life has not been the same since, praise God! There were other very significant experiences and understandings from our trip but I don't think any of them were as significant as the change in potassium delivery. God has not removed the disease from my body, but he has blessed me with friends and family who continually fight alongside me for a much better quality of life. How could anyone not see me as extremely blessed? I know I am not alone, I have a better handle on fighting the disease, I have more energy and I feel like I am living life now, more than I have in the last three years. God is good.
Before I close out, I would like to also share one more thing, and that is that I am now doing a one hour show on media technologies in the church, on an intranet Christian radio station on the Creator Leadership Network click here. My official Showtime is on Mondays at 4 PM. Unofficially, the show will run at various times during the week until those other times get filled by other hosts. Theoretically, the show is currently running at:
Mon-Sun at 4am and 4pm
Tuesday and Saturday @ 8pm,
Wednesday and Sunday @8am,
The last show that I recorded will be the first of a three-part series, which I think will probably begin running one week from this Monday, December 14... but don't quote me on that. It's entitled “Communication, Integration and Preferences”. The first hour’s talk will cover 2 different relevant topics that generally face the sound-tech team members, as well as, Worship Leaders and Ministers of Music, and they are:
“Church in a box?” and “How to communicate with your tech during a service”
The following two shows in the series will address “Integrating Sound Reinforcement with Organs and keyboards”, a response to an Email Regarding “Mic Preferences and Placements”, and also “Monitor Mix Issues”.
If you click on the Reverence Channel link, it will open up a small window with a media player in it. If you click on programs, you'll be able to see all of the different folks who are on the station as well (Vern Sanders, Doug Lawrence, Steve Amerson and Mark Lawson, to name a few). For the first time in years, I'm truly excited to be given the opportunity to serve in a manner that allows me to share my heart and my experiences in a new way. This was, and would have continued to be, totally impossible prior to our trip to Orlando and it should be duly noted that the offer did not come through until after some of my strength and confidence had returned, once we had returned from Orlando. I don't believe in coincidences but I do believe in Him and His timing, period.
If you wish to, check out the site and check out the show and then shoot me an e-mail sharing your thoughts with me, your constructive criticisms and any ideas you may have on how I can make the show grow. And no longer believe that it matters whether or not the door is closed in front of me or not; God's key opens every single door. I really hope that I will hear from some of you regarding this new adventure and I'm also hoping that you will understand my silence for the last month and a half and will accept my apologies for it.
<http://www.creatorleadershipnetwork.com/>
<http://nexmix.serveftp.org/createrev/player.html?noresize=y
>My love to you and your families-
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