Saturday, August 23, 2008

It is right now 11:44 p.m. on Saturday night, and today really turned out to be a pretty good day. I have not had an attack since Monday, however, each day has had serious bouts of major sweating, followed by sharp right, and sometimes left, shoulder pains with nausea and weakness. Each time I was waiting for the attack to actually form and finish out, however it never came out that way. I'm very sure that these episodes are directly potassium related, instead of nutritional, atmospheric or conditional. Of course, I'm hinging these perspectives directly on the information I received from the home care nurse, but it is her information that has made the most sense and connected the most dots, providing answers to so many questions that we've had about the majority of the symptoms that I experience on a daily basis.

I can't remember if I mentioned in an earlier post that, in the letter that came from Social Security granting us full benefits, they specifically noted that my disability is, in fact, Hypokalemic Periodic Paralysis, along with probable Hyperaldosteronism and other muscle myopathys. Lord willing, this letter will be another rung in the latter that we're having to climb for actual medical treatment that is preventative instead of reactive. What's funny to me, in a black comedy sort of way, is that SSI states in their letter that I do have HKPP and that I likely have Hyperaldosteronism, whereas Kaiser is pushing that I have Hyperaldosteronism (which is a fairly rare condition/disease of the adrenal glands) and because it is a rare condition/disease, they aren't willing to accept/consider that I could actually have two rare diseases at the same time. There are other people that have two and sometimes more than two diseases or conditions, but for some reason, it's not okay for me to have them. Even more ironic is that SSI is basing their determination and conclusions directly off of the clinical notes, the different doctors reports and my primary care physicians eight or nine page letter that he sent to them on my behalf. Is it not amazing that the authors of the information provided to SSI, have are unwilling to reconsider and review their own notes and their own facts? Unfortunately, more than ever, I am of the belief that Kaiser, simply does not want to admit that I have a disease that they do not specialize in. I think when all is said done, they've spent more money on trying to cover this whole thing up than they would have spent, had they just pursued finding the nearest hospital with an HKPP treating physician for me to go and see. Nothing less than stupid.

It's now 12:11 in the morning on Sunday; can you believe that it took me nearly 30 minutes just to read those two paragraphs? I guess I'm tired.

As important as sharing those few thought processes above, is that both kids played in their soccer games today and, though Joshua's team did not win either of their two games, and neither did Missy's team, both kids said they had a very good time and that they really enjoyed playing and that they were having fun while playing. How cool is that? (Click here to see a 15 second clip of Missy at the field) It worked out that I was able to attend all four games which took place in two different locations; one in Orangevale and the other in Folsom. I was definitely aware that during Missy's second game, the heat was soaking in it and becoming problematic for me. When the game was done, we loaded up my motorized chair and the kids into the Van and headed for home. During the ride home, I was experiencing the sweating and the fatigue, so once we got home, I went and reclined in the lazy boy chair and ended up taking a three hour nap and CC also slept for probably an hour or hour and a half while on the couch. Speaking of sleeping, I woke up this morning just before CC's alarm went off at 6 a.m., and I realized that I had not moved since I had fallen asleep 6 1/2 hours earlier. Needless to say, I was very stiff and sore when I began to try and move and it took a little while for my body to agree with my mind that mobility was okay. We had to be out at the field in Orangevale by 8:30 so that Josh could play his game at 9:00. Missy's two games were at 10:45 and 12:30, and there is no question in my mind that it is because of the motorized chair, that I was able to attend all four games and be able to last that whole time without any significant issues being triggered.
I think that CC videotaped the better part of all four games, and I also shot a variety of shots that I thought could be used as intros or outros in a finished video product. It is my hope to upload those videos this coming week and then begin the very slow process of editing and putting together a compilation video of this morning's games. I'll have to confer with my administrative assistant to make sure that I have available time in my schedule this coming week...yeah.

Well, it is now 12:30 in the morning and I think it is time to stop. It is my hope and plan to attend the 11/15 service of Capital Christian tomorrow/today. As far as attacks go, I am far from being out of the woods, so to speak, because the triggers are not necessarily immediate. What I mean by that, is that I can trigger an attack that won't happen for 24 to 72 hours sometimes; it seems peculiar and often we look to the immediate and recent to determine the reason for an attack, however, it's well documented that the manifestation of an attack can sometimes take hours to a day or so, and that physical exertion is one of the most common triggers. I guess, saying all of this, is your prayers are coveted that I would get through tomorrow and Monday without reaping any negative rewards from Saturday mornings excursion.

Hopefully, I'll be able to get another post out later today.