Wednesday, December 26, 2007

The Day After Christmas

It is Wednesday, December 26 and we are now in the Bay Area at my parents house. We drove in to San Francisco this afternoon to see the 7:00 showing of The Nutcracker Ballet after dinner at California Kitchen, across the street from the Opera House.
The ballet was different from years past and this one was more focused on the dancing per se, than the story or storyline. We found the departure from the story to be kind of a let down for us; Josh complained that there was only one fight scene in the whole thing and that the fight was too short and wimpy. Too funny.

More later. It was good to make it through the day and night with minimal complication. Prayers we will be without issues for the next number of days are coveted.

peace

Wednesday, December 19, 2007

Wednesday Night Review

Wednesday, December 19, 2007

I suppose it should not come as a shock to me, but I got to thinking this morning, while installing some software, that for the time being, I cannot be left alone for any extended period of time. How strange is that? It’s strange to me and uncomfortable but it is reality and something I must accept without angst, or at least with as little angst as possible.

I slept fairly well last night and I believe that is due to changing what had been a modified pill allotment , back to its directed prescription. All that means is that I had been experiencing very slow and groggy mornings for a while and so my doc’s approval of CC’s suggestion to cut two of the night time medicine quantities back by half have been changed back to the original prescription. Wow. Still verbose even WITH effort.

*Sigh*

Annie no longer barks at my Aunt and Uncle when they come over and let themselves in; no issues at all with their entrance even through the front door. Same as for my parents too. Speaking of Annie, I’ve now watched a couple episodes of “The Dog Whisperer” and I have learned a lot and become more resolute in my convictions of how to walk Annie and treat her as well as how the rest of the family should be treating her because it will take all 4 of us to treat her the same for her to come more inline with her nature as a pack animal and human companion.

I’ve been working with Joshua on his D&D characters (he now has 2 of them and plans to create 1 more) for the game I wish to begin with him and Missy. Both of them expressed great interest in playing the game and my hopes include the probability of having some fun, family time with them. CC would rather watch the game take place or will use the “found” or created free time to do things she wants to do without worrying about where the kids are and what they’re doing.

Having played the game from the middle of my high school years through all of my college years, often playing with as many as 8 to 10 players (Seriously FUN games with much action and activity) or as few as 3 or 4 players, I have wonderful memories of the many campaigns we went on in the games seeking adventure, fun and mayhem, all within the walls of our creative minds. We never took the games seriously, though we were passionate about how we played. There was a friend of mine from my high school years who was very serious about the game, so much so that it became uncomfortable to play the game with him involved because everything was personal and real in a sense for him, it seemed. At one point, we had around 8 of us playing at one of my friend’s houses (we took over the house for the weekend when his parents left for the 3 day holiday so we played a 36 hour campaign without stopping…ingesting caffeine by the tablet (nodoze) and by the can and two liter. Anyway, partway into the game on the Friday night, the phone rang at the house and it was this other friend I was mentioning who took things in the game too seriously, and he wanted to be allowed into the game over the phone. Seems he wanted to “get even” with one of the group that was gathered and playing with us that night, so he wanted to be allowed into the game for the express purpose of killing that person’s main character. The Dungeon Master was aware of intent and wanted nothing to do with the scenario but the friend would just call back over and over to get into the game. It was suggested that the next time he called, allow his character into the came and then have the DM kill off his character via a bolt of lightening from the rainy sky and that would close the books with the guy. That was what we did and the friend went nearly crazy on the phone afterward, threatening us for what we had done to his character. After that weekend, our friendship had reached an impasse; I saw the game as fun and a way of enjoying one another creatively, but he saw the game as an extension of his reality and his character was another facet of his own personality, as in he was living out aspects of life he was uncomfortable with, as the character instead of himself.

Also, some time before that, some real rich kid in college back East couldn’t cope and convinced himself that he had indeed become one with his made up character and to everyone’s great heartbreak, his character had the ability to fly…however he did not after stepping off of 4th story dorm room building in an effort to prove to those who didn’t believe. There will always be those folks, but the group that I cavorted with and played many, many games with, never took the game more seriously than we did take seriously who drank the last Diet Coke, know what I mean?

I’m feeling exhausted now, end of a long day of staying down for the most part. Lots of body jumps, jerking me out of my skin, almost. I think they happen when I am most tired and bodily drained.

That’s it for now-

-peace

Monday, December 17, 2007

Monday night...

Monday, December 17, 2007

Officially, our relationship with Comcast has ended, and to their credit, one of their supervisors called me regarding a letter I sent them sharing my shock and complete frustration in response to a phone conversation with one of there “Customer Service” representatives…nonetheless, it is done and our active email addresses are now, ONLY:

Audiopilot@surewest.net

V12pilot@surewest.net

WCOdum@surewest.net

Bachie77@surewest.net

Missymae@surewest.net

Joshuado@surewest.net

Think that’s enough email addresses? I’m thinking they’ll do for now…

I’ve been resting and staying down for the whole day (so far) which is much harder than one would think it is, at least for me anyhow. Even with remaining down and eating a very specific diet, I’m still experiencing intense sweats, so much so that my glasses fog and have to be wiped off, as well as my mouth becoming salty from the sweat coming from below my eyes; probably more info than most would want to know, but the original goal of this blog is to chronicle my experiences instead of just being a generic family update so I hope you’ll bear with me.

Since I’m on the topic, it’s worth mentioning, even again if I have already done so, that when I sweat, it’s not from feeling hot as one would think, I feel very cold and skin-wise am cold and clammy to the touch; something NONE of the doctors have even TRIED to share a thought on. Right now, I’m sitting on our bed, typing away, while I’m wearing a long sleeve shirt, Emu moccasins/slippers, silk long johns (they breathe better than any other long john fabric I know) and my pull on cap, yet I’m very cold to the touch and feel as close to “normal” as I can. You’d say, “Take off the cold weather stuff, once you’re indoors (especially if the over-all temp is about 70 degrees) and your body will level out.” But unfortunately for me, I become even colder and chills (violent muscle spasms) start up when I dress “normally”. If I go outside now in this pretty cold season, I have to dress twice as warm as anyone else. Those of you whom I got to see during the Summer and Autumn months where the temps were in the 90’s, will probably remember that I was wearing long sleeves, vests, hats etc, which would “normally” be unbearable in that heat. Either my body’s thermostat is just as whacked as my muscle make-up is or I’m fighting some kind of virus which is causing fevers that my system addresses normally, except that I take a fair amount of Tylenol each day that will mask any fever temperature. Personally, I think my system has begun to glitch, either due to some kind of virus or genetic disease.

I had BBQ pork for dinner with steamed rice, a small sweet potato and some salad, but it wasn’t until I ate 1/3rd of a sugar cookie that my back began to ache painfully. Definite reaction to the sugar.

That’s it for tonight.

Sunday, December 16, 2007

Some pics































































































Back Home

It's Sunday night, December 16, 2007 and CC and Josh brought me back home from another visit at Kaiser this weekend. I was admitted straight from my doctor's office visit where I had another attack My potassium at home that morning (Friday) was 5.5 which is 2 points high then when I was admitted my potassium had dropped down to 4.0 and then was in the range of 4.5 by the time I was released this morning.
I was admitted with the diagnosis of pneumonia but the second MD to come see me said that he doesn't think I have pneumonia but instead bronchitis and that my potassium is not a factor (never mind that when he came to talk with me both times, he didn't have the correct lab numbers regarding my K+, anyway. Odd that he used the phrase "I don't know what it is that you have, but I'm certain it's not...". that seems to be the Kaiser phrase).

I'm still sweating like crazy, VERY frustrating. The home nurse thinks it is because I am fighting some kind of "bug" and that I don't show a fever because of the Tylenol I take, however my body sweats like a fever and I feel the after-effects of the fever.

CC just left with Joshy to go and pick up Missy from her friend's house in Rocklin and then they plan to hook up with my cousin and Aunt and Uncle to go look at Christmas lights on a near-by street to the friend's house. I didn't feel like going anywhere, especially sweating like this and just feeling over-all crappy.

I'm going to go lay down and just keep this short. It's good to be back home, as it always is.
Your prayers are coveted for me and my family.
-w

Saturday, December 15, 2007

Tuesday, December 11, 2007

Coming back...

Tuesday, December 11, 2007

Lots of darkness in these past few months combined with very bright lights of family, friendships, histories and even some ideas. The darkness is always there, perhaps it has always been there, just less pronounced, awaiting its opportunity to obscure one's global/spiritual view.

As real as the darkness is, more real and tangible are the bright lights, distracting, if you will, me from the daily oppression.

I guess I didn't begin on a very telly-tubby note, huh? Live by the scope, see by the scope and continue to pray for better vision and sights.

My energy is pretty low these past days.


A few days have passed since I started this entry; now it is Friday, December 14, 2007 and I have had 2 or 3 more hard attacks, I think one per day. One of them scared me bad, like the fear from when I was in the Rec Hall at work last year. This time though, we didn’t go in but CC and my aunt took care of me here.

I have a walker now as well and have needed its use a number of times since its arrival. I never imagined that I would need the use of a handicap placard or cane or even walker by the age of 44.

We have been waiting (until last night) for a call or appointment with the Endocrinologist from Kaiser SFO, who we saw a couple months back and who had promised to do a very inclusive and thorough examination of me and my history…last night she called (after CC had scheduled an appointment with her following no replies or correspondence from our phone calls and emails, but I was too weak to travel to SFO and back in one day trip, so a phone appointment was arranged instead) and the bottom line of her call was to suggest that I might be taking “some *other* medications that neither she nor the doctor may know about” and essentially that whatever I’m enduring is not an Endocrinology problem, regardless that Neurology and EVERY other department I’ve seen says it is. She wants nothing to do with me or my care. Sound familiar?

I’m beginning to get angry, so I’m going to stop this entry and begin a new one later-

Thursday, November 29, 2007

Internet is up at the house

Thursday, November 29, 2007

Hi all-
This will be brief, but I wanted to let you know that we are up and running and my new email addresses are:
audiopilot@surewest.net (notice no dot between words...)
v12pilot@surewest.net
Home email is wcodum@surewest.net
CC's email is bachie77@surewest.net

We thought that there would be the dots in between words, as was the case with comcast, but that is not the case with surewest.

More later-
peace

Tuesday, November 27, 2007

Even though they lost our

Even though they lost our business, they STILL charged us for an installation here that they didn't do. Yet another call..

Internet 2be installed tomorrow, Wednesday;

Internet 2be installed tomorrow, Wednesday; new suffix 2 same addresses: V12.Pilot@surewest.net etc.
Comcast lost the bid.

Attacks have gained in frequency,

Attacks have gained in frequency, nearly 1 per day now, though they are not as brutal as could be. Life has been tough.

Yesterday (26th) I turned 44

Yesterday (26th) I turned 44 & my parents came up 2 share the day with me and the fam. We went 2 Red Lobster for dinner :-)

Hi- blood pressure has been

Hi-
blood pressure has been dropping and we began logging it last week. Stopped 2 of the reg meds to bring it up...

Thursday, November 15, 2007

Finished test; equivalent 2 running

Finished test; equivalent 2 running a marathon through an IV. Heart rate reached 155 & I felt beaten into the dirt & wiped.

I'm in the waiting room

I'm in the waiting room for an IV Echocardiogram; 90 min if all goes well. I failed my previous tests, so...we shall see...

Attacks are nearly daily now,

Attacks are nearly daily now, but generally not requiring ER support. It's like it chips away at my being and my strength.

Tuesday, November 13, 2007

We are still without internet

We are still without internet cable and phones at the new house; sorry for the long gap in communication. Maybe this wknd?

Friday, November 09, 2007

Monday, November 05, 2007

Repeat post from August 08, 2007

My blog has been hacked in the comment area with garbage comments with links to porno crap. Until I can figure out how to remove them, I'll repost the afflicted posts.

How truly annoying.
_______________________________

Wednesday, August 08, 2007

I’m back at home on my bed.It hurts to walk and stand and I’m more than tired.No sleep while we stayed at Roseville Kaiser lying on a gurney in a hallway for several hours, waiting for a room that never came then several more hours in a back room someplace in the ER. The Roseville hospital admitting room never came and I was sent via ambulance to Morse Ave Hospital where 3 beds were squeezed into a room that should have held one bed. No sleep for another 36 hours or so.May God show pity on me and my family and not allow any more of this calamity befall ANY of the rest of my family and my friends and may He bring rest and restoration to me and my wife and my children.

I’m so tired and beaten.
No more writing for now.

Will it be better tomorrow?

Thursday, November 01, 2007

Beginning of November

Thursday, November 01, 2007

So we are beginning the 11th month of 2007, a year filled with life changes and monumental decisions. As we near 2008, it is my hope and prayer that 2008 will not be as tumultuous and painful as this year has been.

Biggest change to note now on here is that we have found a home to rent in Orangevale (nearer Greenback and Fair Oaks Blvd) and it has 4 bedrooms and 2 ½ bathrooms. It has a big enough yard for Annie, though it is far smaller than our existing home’s yard. CC suggested that the 4th bedroom be an office and music room for me and it is right next to our master bedroom.
We have begun moving and hope to be living there as of this coming weekend. I’ll post some pics once we get in there and are comfortable. Oh yeah, there is also dedicated room/space for the boat to reside beside the house, behind a fence. The garage is an actual 2 car garage where I can have a workbench and tool area. Very exciting.

On the unfortunate side, I have been suffering attacks nearly every other day though they are more mild than severe, they still knock me down for several hours at a time and they completely change our family’s planning in a heartbeat.

Headway: My good friend and mentor Art Yeap called a short while back and suggested that I review and consider that a number of my attacks have begun while I was bending over and or working on my hands and knees, a source of physical stress and possibly neurological base. He’s completely correct in noting my physical posturing at the time of the onset of the attack and I’m hopeful it may be another workable piece of this complex and disruptive medical puzzle.

CC has a new work schedule now; she no longer has to work starting at 6:00 AM like before, but now starts her shift at 8:00 AM which allows her to see the kids before leaving for work and she now can get more sleep as well.

Last night, Halloween, we went to Capitol Christian Center’s Fall Festival which was HUGE and outdoors. The kids had a great time and each came home with way too much candy and I was able to walk with them for a period of time before having to retreat to the car to warm back up. I paid a price for the evening but it was worth it in my mind, to see the kids enjoy their evening and spend time together as a family. Pics hopefully coming before too long. We’ll see.

On to the rest of the day…

Sunday, October 28, 2007

10 days later...AGAIN! Grrrrrrrrrr...

Sunday, October 28, 2007

It’s 7:34 in the morning and I got up 34 minutes ago. I awoke from a dream wherein I was struggling to contain a snake of black color and a snake of white color and get them into a case of some kind that kept changing shapes as well as the snakes changing body sizes so that they were escaping through the netting of one container then returning to the larger snake size they had been to begin with.
I’d rather be awake.

I’m sorry not to have kept this up to date any better than I have. Joshua and I have both been contending with some kind of virus with Josh getting the worst of it, no doubt. He had a fever of 104° for nearly 5 to 6 days and missed last week of school as well as the Friday before. The virus manifested in me with stomach cramps, daily weakness, lightheadedness; a kind of set of significant HKPP symptoms on a daily basis.
Friday evening we were out with the kids and CC suggested Fresh Choice for dinner. We were on our way there when symptoms began to ht but I felt that I could get through it so we could have a small dinner out.
I was wrong.
CC said that after getting inside that I began to lose it while standing in line to pay and she helped me get to the booth the kids chose. Somewhere after that my hands went numb and CC gave me some K+ undiluted, a memory I’ll not soon forget, but it did not immediately restore me so she said that she and Missy, each under one arm, carried me out to the car and then back home to the couch. That’s the first time at a restaurant and the first time of numbness in quite some time. It scared me. I guess they all do, scare me that is, in some fashion or form. So yesterday was pay the price day, as is today.

Cool note: Joshy and I have been writing a song together with him playing some guitar and some keyboards. He even wants to sing on it too! How COOL is that?? The only negative is that he doesn’t want to wait to do it, even if I am feeling poorly, he is quite anxious to keep going.
Also, I found a rough tape demo from my Forthright days (Christian Metal/Rock) and will figure out how to post it so you can hear what I did “back in the day”.

That’s all for now. More later…Sooner…sometime.

Friday, October 19, 2007

Back after a While: Two days in one entry...

Thursday, October 18, 2007

Today’s been a hard day.
I’ve allowed the realities to become my primary focus and depression became quite tangible.
The privilege to drive has been such an escape for me that losing it struck deep and hard. Of everyone who reads this, I know more than all to look up and not get bogged down, but there are days…indeed, like this one, where it is almost a fresh shock to accept that I have a disease that laid relatively dormant for over 40 years and now has moved into a gear that affects me every single day. I was sharing with CC that I’m grateful that I was given a “free” pass, so to speak, for the past 40 years but now, I seem to pay a daily price for each day of my youth that I escaped the pain, the spasms and the fear. No more escaping. No more refuge. In a matter of weeks we will have to move out of our home because I can no longer bring in the money necessary to pay the mortgage. Rental agencies want proof of employment to show them that we will pay our rent in a timely manner and I cannot give them that proof.
We leave in a minute to go see a possible rental…back soon.

Friday, October 19, 2007

Challenges abound. After returning from looking at a 5 bedroom home with a pool and such, we came back home to drop me off so CC could go get the kids from school. My legs gave out as I got out of the car and CC was there to help keep me vertical and get into the house and onto the couch. Medicine and then rest/sleep for a while.
We had a wonderful visit with my bro Keith Nesja and his mom for dinner time. Keith is in town because of his dad’s heart surgery at Sutter Medical, as was his mom. We had dinner with them and reminded each other of stories and such. It was very cool.
Before they left they had the unfortunate opportunity to witness me losing my ability to stand while we were all in the kitchen talking and petting Annie. Once again, CC was right there and I didn’t hit the floor. I think Keith followed suit in supporting me and they brought me to the couch where our visit soon ended.

We’ve decided not to go to Florida.
We both feel it is too risky to fly that long in a plane, especially with nearly daily hits, like they have been.
We DO hope to make some kind of vacation out of the time CC has off from work. We’ll have to see about that.
Waiting for a call back from the doc offices regarding getting an appt. today. Pray for no office attacks.

Friday, October 12, 2007

Ugly Attack Yesterday (Thursday)

Ugly attack yesterday (Thursday) while we were in Redwood City during a dr. appt.
Ended up in ER until stable then CC brought me home.

We had gone to Redwood City to see another doctor about the DMV situation and to consult regarding my ongoing symptoms. Once we got into the doctor's office, I began to feel progressively worse than I did during the car ride down to the Bay Area. I'm not certain how long it took for the attack to fully manifest, but the rest of the time down there is very sketchy at best.

Friday was spent horizontal and today, Saturday, we had both kids' games at the same field in Orangevale so CC and I got to watch them both play, together.
I'm still very sore today and feeling very fatigued. My goal has been to type as much as I can on a couple projects before having to call it a day. I'm pretty much there now.
Continued prayers for healing and for us to find a new home somewhere in the area.
In the past 12 months, I've lost my job, my home and my privilege to drive, all because of this disease. It's been a tough year, to say the least.

Tuesday, October 09, 2007

One Week Later...Big Changes.

October 9, 2007

We’ve gotten the answer from the mortgage companies; no deal or cooperation, so our house is now in foreclosure and we need to find a rental somewhere in the Orangevale, Fair Oaks area, possibly Citrus Heights or Roseville, depending on the opportunities within the Orangevale and Fair Oaks areas.
We knew this would be a possibility months ago and we hoped and prayed for another solution, however, we have what we have and will do our best with the present circumstances. My afternoon will be calling on houses, as yesterday afternoon found CC and I driving from possible home to possible home for a few hours but finding no suitable opportunities. Worth noting is one home that we looked at which was renting for $1,750.00 month, 3 bedrooms, 2,300 square feet on ½ an acre.
“No pets”.
We were bummed when we learned of the “no pets” clause and that there were two families before us waiting, one having already placed a down payment. This place was amazing.
So, the positive from that was that there ARE homes out there with a good amount of square footage and that we need to keep our noses to the grindstone and search hard for the home that God has planned for us.
If ANY of you know of a 3 or 4 bedroom rental in the areas I noted above, please let me know ASAP and I’ll check it out.

We took another hit from our blind-side, so to speak…the DMV sent me a letter letting me know that my driving privileges have been suspended indefinitely until a have a doctor clear me completely. My current doctor worded his input in such a way that the DMV felt that I am a risk behind the wheel. This means that ALL transportation needs of the family fall completely on CC and tie my hands for getting kids to and from soccer practices Mon-Thurs nights and soccer games on Saturdays. AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Seriously pissed me off to lose my main source of independence and mobile musical escape.
In-freeking (insert profanity here)-credible.

Bright spot: My parents came up and stayed with us for the weekend. It was wonderful to see them for a while.

I went in this morning to get my labs drawn and was feeling somewhat poorly. 10 tubes later I was weak and wanting to go home.
I suffered a mild crash after the lab and slept the rest of the day after taking some meds to level my numbers out. Also, I forgot protein this morning so…there you go. Idiot.
My aunt apparently stayed with me for most of the afternoon while CC was gone.
I’m a blessed and fortunate guy.
On to tomorrow.
peace

Tuesday, October 02, 2007

Recovering

October 2, 2007

I have rebounded fairly well from Sunday afternoon's hit. I had felt somewhat poorly earlier that day and had been fairly active on Friday and Saturday. I had been kneeling on the ground for quite some time, cleaning up after a storage bin had fallen off one of our shelving units. The bin contained several of my 8mm, VHS, audio cassette and CDs and was located directly underneath a container of auto coolant that was leaking directly into my bin of collectibles.
I don't know how long I was down there, but it had been a while inspecting and cleaning off each and every salvageable cassette that I could. When I began to stand up I realized that I might be having a problem and began to lean on my cane for balance and support. I heard Joshy call for Mommy who was working a little distance away and then all of a sudden she was holding me up and then the next moment I was sitting in a chair. She and Missy carried me into the house and I spent the remainder of the day on the couch with soreness, spasms, lightheadedness and complete weakness.
Yesterday, Monday, I spent in bed all day due to weakness and very sore feet, ankles and such.
I am able to walk fairly well today with the cane but am still sore from front to back, hands to feet.

Bright spots:
- More cuddle time with Missy and Joshy
- We attended church on Sunday (Capital Christian)
- We got a fair amount of nitty gritty done in the garage before and after my issue.
- We had quite a fun mellow day on Saturday afternoon over at my brother and sister-in law's place (with their two young boys). One of CC's older sisters was there with her husband and their daughter as well as Nana (though she spent the whole time lying on the couch napping or acting like she was napping. It was good to be there and hang out.
- I got to speak to my bro Harry who lives in Long Beach; my brother who I miss very, very much. One of these days I will post some of his drawings on here to brag on how talented he is.
- I got a voice mail from my brother Carl. Carl and Madoli are two special and good friends who have been there for me/us over the past year of our suffering and I value them both. I still value my whole Media Tech team, though I don't get to see them or hear from them very much. When I do see them, it's always a blessing to me and warms my heart.

Concerns are:
- That I did not see Sunday's attack coming and that I could have easily fallen on my face if CC had been there a second later. I'm a blessed husband with a seriously strong wife. I weigh 225
- That my main caring doctor is on a long vacation from October 1 through November 20 and I will have need of medicine refills in between which has me nervous.
- That an irreversible process has begun with regard to our home and mortgages and that we are uncertain that we have definitively heard God's direction for where we are and where we are to go. It was our prayer to work out staying here somehow, coordinating with the mortgage companies, but we don't know yet what their answer is. Continued prayers are begged for on this topic, please.

That's it for now.

Peace.

Monday, October 01, 2007

Down today from.attack yesterday in

Down today from.attack yesterday in garage.
Hard to stand/ walk by myself.
Couch then bed. CC, Missy & Joshy cared 4 me.

Monday, September 24, 2007

...Please continue to pray for

...Please continue to pray for all of us and each of us.

Please.
peace.

I did PT this AM

I did PT this AM and feel pretty weak from it. When shes done at the chiro we are heading to the lab for my numbers.
Bleh.

CC had to work yesterday

CC had to work yesterday but came home early due to feeling sick and she called in sick this morning too.
:-o(
Pray 4 wife

I took the kids to

I took the kids to Cap Christian Cntr yesterday for the first time in like, 3 months. They really enjoyed it. I did too.

David is spending a year

David is spending a year in the US with my sister's family as an exchange student and he was Kirsten's Hungarian brother.

...as Joshy played soccer. It

...as Joshy played soccer. It was a really neat time with them, although far too short, as always. We also met David...

This past weekend... was a

This past weekend...
was a good weekend. We got to see my sister and almost her whole family Sat and they watched Josh...

Wednesday, September 19, 2007

Post number 200! September 19, 2007

Wednesday, September 19, 2007

God is good.
Once again, another week goes by and once again, I have pretty good health to hold culpable for not writing more, sooner. Not that Good health is a bad thing, by NO means, but having felt so much better, I have remained as busy as I could which meant not sitting at the computer or lying in bed with the computer to vent on or better said, vent into.
Worthy of note at the beginning, God is good regardless of how I feel. I know that. I just happen to write it in parallel of feeling better. God is good, regardless.


I'm uncertain if I noted in my last entry that this past weekend was not only a celebration of Missy's 13th birthday, but also on the 16th, CC's and my 18th wedding anniversary. Unable to really celebrate, we spent the day actually relaxing. CC actually watched some TV and laid on the couch for part of the day. I'm so glad she was able to relax and rest in this turbulent time of life. I'm blessed to have a wife, let alone her. Truly, a gift of God for the rest of my life.

Rain is supposed to be coming tonight and tomorrow and then again on Saturday and we are looking forward to its return. It says thunder storms, but we seldom ever get those, though that would be so cool if we did, however the temps have been changing from the 90’s and 100’s now down to yesterday’s high of 82 and today should get up to the low 70’s. I’m uncertain how my body will handle and react to the cold weather, but I guess we’ll find out soon enough, yes? Bring on the thunder showers. (Less yard watering on our part…)

Yesterday had a price though; I went with CC to Costco which I normally do whenever I can and typically I use one of their electric carts, but this time I felt good enough to walk with her and even without the cane. Very cool. End of the trip we were both hungry and their little food court holds few options, so I decided to try their hot dog, something I have greatly enjoyed in my past but have discontinued because of concern for the salt. Well, I should have stuck to my train of thought because within minutes of eating the hot dog, I began to sweat and feel very poorly; an instantaneous reminder of what it feels like to feel badly. My stomach began to cramp and my head started getting light. We both drove our respective vehicles home and I went right in to the couch and laid down. I remained down for the next couple hours but the sweats came and went a few times and I felt very yucky.
CC went and picked up the kids and brought our two back home in hopes of picking me up to join them in visiting one of Missy’s friends who landed in the hospital the night before from a car accident (Leah). Leah’s alright, all things considered, she’s got a gash in her right arm that may take some surgery to fix up, so she will be hospitalized for the next few days anyway and CC wanted us to go see her and I didn’t want to stay home by myself, so I made up my mind to go with them and hoped that my body would settle down. The cane became necessary again for the remainder of the evening which was a let down. I had gotten used to walking around without it.
We got to the hospital and things went reasonably well and though I didn’t feel good, it wasn’t terribly obvious other than me wearing my sweatshirt hood to keep my head from getting cold because of the sweating (think Uni-Bomber with less of a beard and such). We visited for about half an hour then we left to go get dinner for the four of us at Fresh Choice in Roseville. This place beats the other franchise locations by a mile in cleanliness, set up and even menu selection and lay out. Turns out that I can eat most things there without any real issue, though I tempted fate again by having a small amount of apple cobbler for dessert, for which I suffered more sweating but that, thankfully, was all I noticed.

---------
Moment of reality: I am the parent of a teenager. Whoa. Things have and are changing before my eyes. What a trip.
---------

This coming weekend is a Christian leadership conference at Bayside Church and I have been given admission to the conference and Friday night concert for my family and I’m really hopeful that I’ll hold up for the two days involved. My buddy Craig thinks he may be able to go as well, so we can keep one another company if, indeed, he can attend. Prayers for this weekend are sought and coveted. Ordinarily, I would not choose to spend time away from CC and the kids but this opportunity is unusual and could be enriching for me from a number of aspects and directions. Plus it should be rainy if the forecast is correct and unhindered.

I’ve been keeping a symptom and meal log for the past few weeks now and my Primary Doc okay’d me emailing it to him for him to take a look at such. Thanks to Carl and his fellows at his work as well as my cousin Rob in North Carolina, the chart is working out very well as long as I stay up with it and don’t get far behind on it.

I don’t remember if I noted in here that I bought some D&D dice and am borrowing my nephew’s books in order to see about playing some D&D with Missy and Joshy. I was holding off on it due to a skeptical spirit, I guess, but after talking at length with my buddy and very good friend Pastor Josh, I feel much better about playing with them, given their creative minds for role playing as it stands now and the Warrior books Missy has been reading for school which are about animals that from clans and fight medieval style in a take off of knights and such but having animals play the parts of the characters. I didn’t get into D&D until I was in high school, but then the games came out at that time so I was involved in the beginning times of the role playing games of the early eighties and I loved it. Of all the games and friends that played it, I had only one friend who took it a little too far and got kinda weird about it, but all the rest of us identified him as that and supported one another in knowing where our grounding was and not getting caught up in the game but remembering that it is “just a game” and that you get out of it what you put into it, pretty much. Not long ago, I showed Missy and Joshy the drawings that Harry had drawn for me of my D&D characters and they were very excited and inspired by Harry’s incredible talent with a pencil and parchment. I wish that I could find my original character sheets which I know I kept, but that they are in one of the nameless boxes STILL in the garage…sigh. For the time being, those drawings are wrapped up in my bedroom where they are safe. Come to think of it, I should unwrap them and take a digital photo of them and then post them here for you guys to see. For the most of you they won’t matter much, but for those of you from “back in the day”, who remember playing the games and playing with Harry, the pics might spark some good thoughts and who knows what else? We used to play single days of 5 to 8 hour games up to our 72 hour marathons (Fri-Sun) fueled by caffeine, adrenalin and sugar. They were very fun times that involved no computers…remember those times? It was just our imaginations with paper, pencils and dice. Now the kids have access to D&D games that are computer based and the imagination is used quite differently from the earlier days where what you saw in your mind was corporate with other players shaping the imaginary journey with their character’s input. I hope I can do the game justice and make the time fun for the kids. I’ve drawn up a couple maps of mazes/dungeons and need to fill the created rooms with beasties for them to battle and outwit.

A topic of prayer need is for next month’s Periodic Paralysis Convention in Orlando, Florida. I had set up room reservations and some extended time there to see family and local sights, but the more we know about what I’m dealing with, the less we understand and I’m uncertain if I should take my family across the United Stated to attend a conference that may or may not focus on my needs and situation, let alone the kids being out of school for that amount of time and coverage for our animals, etc. My prayer is to know confidently whether or not to attend and to know this soon since it requires the necessary planning and such. I guess it’s possible that it may be happening at a time that is possibly very unfortunate for us as a family, timing-wise as well, but to understand that more, you’ll have to read this next small paragraph that follows…

Our home situation still needs your fervent prayers. I cannot go into much detail, but we are waiting on God to learn whether or not He wills us to stay put or move to a rental. We’ve been riding a roller coaster of thoughts and directions, but the bottom line is what does He want us to do and how can we do it. Waiting on God is by far the hardest thing I know to do, yet I know He answers in His timing. Problem is that my timing and His timing seldom are aligned and calibrated, know what I mean? Please be praying for His continuing handling and holding of us and that we will quickly and surely see His direction in this time of high stress and monumental, pivotal decisions. I’m not sure how else to phrase it. We are living kinda scary right now and, like the child who needs the comfort of the parent’s touch when they are afraid of the unknown darkness of the familiar closet, we need to feel His touch right now as well as we face uncertainty.

peace-

Wednesday, September 12, 2007

Behind, Once Again...rats.

September 12, 2007

So I've fallen behind by a week again...what's the deal?
This time, it's actually because of better days than because of bad days and I haven’t stopped to write and catch up. The past week has been pretty good, numbers-wise in that my Potassium has been near and around 5.0 which leaves me feeling like I’m nearly normal. The negative to that is that I have been taking 40 Meq of K+ each morning in order to keep my numbers elevated and if I was to cut out the Potassium supplements, my numbers would change towards the lower 4’s then 3’s and I would feel worse and worse. I’m still very sensitive to sodium in my diet and I go through complete body sweats when I have much salt.

Yesterday I was to take a Nuclear Stress Test where a chemical is intravenously put into my system and then I eat and allow my body’s blood to work on the stomach and then they monitor my heart and veins to make certain everything is working properly there. They called the night before to let me know what the fasting guidelines were and I let then know then that I have an intolerance to IV saline but they wouldn’t take me seriously about it and said to just let the RN know in the morning, so…when we (CC and I) got to Radiology the next morning and fasting and all, we told them that saline is an issue and showed them a printed document from my doctor stating such, and they had to call off the test because the medicine has nearly 10% saline, and though there is another medicine that is D5 based, they didn’t plan for that, regardless of my chart notices and such. Pretty frustrating, especially when we forecast that outcome the night before. We have to wait now for another appointment with another medicine.

I had lunch today with my good friend and pastor Josh from FOPC and the minutes just flew and before we knew it, we had been talking for two and a half hours and I was over due to be back home. Oops. It was so good to have time with him and catch up; he has been given such a refreshing point of view that I learn multiple things each time we hook up and talk and I always walk away being blessed and waiting for another opportunity to talk and share.

Tomorrow is Missy’s 13th birthday and she could not be more excited. We are definitely living out a change of person in Missy as she gets older and changes, which has its pros and cons, needless to say. She challenges CC but doesn’t challenge me. Hopefully that will remain and she will back off challenging her mom too. I don’t know what the future holds but I’m hopeful that we have raised her as God wanted us to and that she has been trained in righteous ways. That’s really our main job for these years; to raise Missy and Joshua in the ways of God and prepare them to become God believing and God fearing adults in time.

That being said, I’ll let this go for now so I can finish getting the kids ready for bed…actually see to Joshy finishing his homework and then getting them both to bed. Due to This being a birthday weekend, CC has been cleaning house like crazy and working herself thin. Looking forward to resting sometime, but not yet. Your prayers are coveted continuously for health, safety and His divine touch in and on our lives. If we don’t have Him, we have nothing.

Peace-

Wednesday, September 05, 2007

It's been a week plus...catching up

Wednesday, September 05, 2007

Well, I’ve let my written accounting go for another week; sorry about that. I seem to suffer attacks nearly every other day, though they are not what we consider “big” or critical attacks, they still knock me down for hours at a time and shift all home responsibilities to CC and the kids each time they hit. Missy has become very familiar with how to care for me once the attack hits. I don’t think it is fair that she has had to learn this, but it takes the solitary stress off of CC from time to time when it does hit.
Worthy of note though, is that I’ve had some really decent days in the past week in spite of having caught some kind of bug that CC and Missy caught and have been contending with. Sore throat, head ache, lots of congestion. My version has not been as bad as theirs, but it seems that the simplest symptoms became exaggerated in effect.

We’ve learned that the long term disability that we’ve had, is actually hinging on our receiving Social Security which they expect to be repaid through. In other words, even though we’ve lost two petitions to Social Security and we are now on our third appeal, should we succeed in receiving Social Security, the company who is paying out for the long term disability expects to be repaid in full through the award of our Social Security claim; i.e. they get paid back through the award for all they money they paid us. We had no clue until recently when we were being “encouraged” by the Long Term Dis. Company to win our appeals case with Social Security and then we read the fine print in one of the letters we had received months ago. They have been, in a sense, simply “loaning” us the money until Social Security goes through then they get their money back through our award. We had been looking forward to winning our case with Social Security so that we could get our feet back under us far better, but apparently that’s not what the future holds at this point. More stress.

CC has connected with a Chiropractor up in Roseville and our united prayer there is that he can help bring relief to her back pain and migraines. She had seen one back when we lived in the Bay Area and it had worked out well for her as far as relief was concerned, so that is our prayer now as well.

I’ve been working with some of the symptom charts that some of you sent me and I’m beginning to get the hang of it now, though it is more challenging than I had thought it would be to keep up with. It’s my hope that these charts will better illuminate what is happening with me and can be sufficient data for whichever medical care we see. Currently, we’re still with Kaiser, fighting away. My last appointment was with another Endocrinologist, but this one from Kaiser San Francisco. She did a thorough exam and concluded our appointment with her saying she has absolutely no clue as to what is plaguing me but she will be digging into it over the following series of weeks.
The last series of labs I’ve had done (on my own) have shown possible liver issues which we think might be explaining why I feel as crappy as I do, like today, but so far, it is just our research and assumptions based on the data we see from liver lab tests that have come back abnormal. I’m going to email my doc today and see if he will investigate this avenue more thoroughly. Symptoms are/have been; over-all malaise, nausea, increased tiredness, abdominal and lower back pain, some stomach cramping, light-headedness. “Hurry up and wait” syndrome, I’m much too familiar with.


Due to how I was feeling since I awoke this morning, I took a long, few hours nap this afternoon and accomplished so very little. When I feel like I'm dancing slowly with my symptoms, all I want to end up doing is trying ot sleep it off, which is frustrating in and of itself.

Plus note:
Missy and Josh are doing really well in school even though Joshy doesn’t have as many friends in this class make up as he did in last year’s class make up. That’s hard for him, but we have been really proud of both of their efforts in class so far. Joshy has done great in his spelling and writing and Missy is 130% in her reading expectations. Considering the stresses we are swimming in as a family right now, it is a true blessing to see them succeeding in their efforts at school.

That’s all for now.

Sunday, August 26, 2007

Sunday night

Sunday, August 26, 2007

It's Sunday night and today was better than yesterday was; I could walk more independent of the cane, though I've more or less accepted that the cane will be with me for the rest of my life. One less battle to fight.
We shall see what tomorrow holds.
peace

Saturday, August 25, 2007

We made it to the weekend...

Saturday, August 25, 2007

So, we made it to the weekend.
I went in yesterday with CC to see my primary care doc and I think the coldness of the office atmosphere brought on an attack and he coded me right then and there and away to the ER I went via ambulance again.
I STILL feel like a truck ran over me and I'm heading for the couch to lay down for a while so this is a short one.
My CK levels have been very high indicating muscle problems and damage and my ALT levels have been elevated as well indicating liver issues.

I feel more like a I'm a science project gone wrong.

Wednesday, August 22, 2007

Wednesday, August 22, 2007

Wednesday, August 22, 2007

Monday and yesterday morning were pretty good days, especially Monday. Yesterday I woke up and realized I had sweat pretty substantially by morning and then once up and going I was feeling better.
I drove the kids to school and stayed with them through the bells for class, except that Joshy tweaked his neck jumping from a 3’ monkey bar post to the ground. The pain was enough to bring him to tears and cause hyperventilating fright, so I took him home and began Motrin and ice bag 15 minutes on/15 minutes off from 9 AM through noon.
I then went to have lunch with my buddy Rob at Olive Garden where I had salad and a bowl of minestrone soup and a 1/3 of a bread stick. No after dinner mint either, sigh.
I felt no symptoms after lunch or while driving home.
I got home just when CC had gotten home and had begun unloading the van from Costco.
It was nearing the time for Missy to be picked up so we agreed that I would stay home and then take Joshy to a later afternoon Dr. appt. while CC would pick up the kids from school and then go do another errand. CC left, Joshy was on a computer and I was trimming some tri tip to prepare for marinade and dinner that evening.
While trimming I noticed that one eye then the other would twitch involuntarily and I would blink to regain my focus and orientation. I then realized that my eyes were having muscle spasms and then the spasms began in my forearms and biceps / triceps as well. I got most all the mat cut when I began to feel lightheaded and needed to hold the counter to keep my balance and very shortly after that came muscle pain and pressure in my center and left chest and I had to go sit on the couch. I called CC twice and got voicemail and then she called back and came back home.
We ended up not taking me in but CC treated me at home and I feel like hell today, par for the course.

Here’s CC’s account for records purposing:
```````````````````````````````````````

Episodes

8/21/07
3:30pm

Chest pain ( center left )
SOB
Nausea
Muscle Spasms – eyes, chest and arms
Cold sweats
Dull ache left thigh

Gave:
1 Aspirin
4 Ativan
3 Methadone
Oxygen


Low key day
Out to lunch w/ Rob
Working on food in kitchen when sx occurred
e-mail Fujioka details for documentation

4:00 pm


Lower back pain
Body spasms

1 table potassium

Hot / cold sweats
Spasms
SOB (short of breathe)


4:45pm


Nausea
Gave:
2 tsp Phenegran



5:30pm


Resting, meds taking effect, chest pain lessoned, right thigh pain

```````````````````````````````````````````````````
Today we head in for more labs and a doc appoint for Joshy who’s still feeling pain from yesterday
.

Monday, August 20, 2007

Some help if you are so inclined...

Monday, August 20, 2007

I woke up this AM around 6:15 and got the kids ready for school and actually was able to get them to school in plenty of time. I attribute this good fortune to feeling much better today than my previous several days and weeks. I’m taking it as a heavenly gift and appreciating it in like fashion.

The help I’m asking for is in creating an Excel worksheet which will log daily experiences so I can more formally track my own symptoms easily. If it is much more than a simple “fill in the blanks” or “check the box here” then it won’t be feasible for me to keep up with when I’m feeling poorly. I plan to keep the log in my Axim (similar to a Palm Pilot…but better in my opinion…) so I can always have it with me and I can sync it with the computer when I sync up.
I try these logs from time to time but I have little success because I make them more than they need to be inevitably, so I’m hopeful some of you will be willing and able to create a log for me to use or at least try out in Excel format; I’m using Microsoft Office, that’s the catch.

Here’s what I was using so far with the formatting change of the Date, Time Row would be diagonal to like 15%, though I’m not seriously attached to that formatting. Also, instead of “X” I’d like to have a box that I “check off” or mark, fill in, so to speak, where multiple symptoms can be selected instead of just one. And the format could be done vertically instead of horizontally if you see how to do it…see, I start to get all creative and want a finished Masterpiece when I’m done…sigh.
Anyway, see below for the columns I am certain I need in the chart and keep in mind when creating for the possibility for adding more symptoms if needed:


Date

8/20/2007
Morning

Time
Body sweats
head/neck sweats
light headed
Disorientation
have to sit down
general weakness
blurred vision
Numbness (location?)
Muscle Cramps
Muscle Spasms (Brief, minor)
Muscle Spasms (Major)
Chills
Myoclonic Jerks (Logged the morning after)



Please send me any ideas to v12.pilot@comcast.net and know that they will be received with the utmost appreciation and gratitude. I need help on this so I’m calling out to anyone interested.

peace

Sunday, August 12, 2007

Sunday, August 12, 2007

Sunday, August 12, 2007

Life has been moving by swiftly since I last entered my previous text.
Last Monday, August 6, as best as I can recall, I spent nearly a couple hours cleaning some of the carpets in our house with a carpet cleaner while CC took the kids to karate.
Progressively feeling weaker as I went, I wanted to complete a certain amount of the task I had put in front of myself and after completing the task I had set, I realized I was very tired and was having a hard time keeping a clear head to think, so I sat down at my computer and began to read some emails. Sometime after sitting down and reading some, I passed out and woke up with my head on the edge of the keyboard. After waking up, I was very concerned and light headed, in a panic because I was alone and couldn’t remember where everyone was. The cold sweats began and numbness began in my hands. My chest began to feel tight and it was becoming difficult to breathe with a localized pain in the left side of my chest and left arm.
I made it down to our bedroom and lay on the bed. Somewhere in that time frame, CC called and I think I told her of what was happening and that I was scared in this one.
After she came home, I told her I had been experiencing more of the same and some distinct muscle jumps (contractions) but the numbness did not progress past my hands and wrists. She gave me a dose of liquid K+ but nothing improved and that furthered my fears so I asked her to call 911. It was around 6:30 PM, I think.
EMTs were there in a manner of minutes but I don’t remember much past hearing the sirens approaching. They got me onto a gurney and CC road with me in the ambulance where they administered a number of doses of nitroglycerin to ease the chest pain (which it did, as I recall) on the way to Roseville ER. My aunt was waiting for us at the ER after getting a call from CC before we left and she stayed with me through the night and till noon the next day.
This next section of timing details is what I recall from my haze of lack of sleep, pain, pain meds, nausea and muscle spasms, etc.
After arriving at the Roseville ER, I stayed in a hallway near the nursing station for several hours until they moved me into a back room in the ER somewhere and my aunt was told that I would be admitted “eventually”. “Eventually” went from the initial target of 2:00 AM to 4:00 AM to 8:00 AM and then I was offered the option of being transported to Morse Avenue Hospital where they had open beds waiting instead of waiting for the new targeted time of Roseville’s noon to 2:00 PM, so I opted for the transfer to the Morse Avenue facility.
The EMTs arrived to transfer me to Morse and I asked for some nausea medicine for the ride but was told “No, they’ll give you some when you get there”. The whole reason for asking for the medicine was because I was feeling sick and expected the ride to make that feeling worse (which it did) but it was clear that they didn’t want to take the time ti administer any more meds for whatever reason. Even the EMTs looked at each other with a kind of quizzical/”I don’t understand” look after I was refused the medicine so one of the EMTs went out and asked on my behalf and was shut down as well, much to their surprise as well.
After arriving at Morse Avenue on Tuesday morning, I ended up in a room which should have held one person, maybe two at the max, but was set up for three patients very snugly. CC came by after she got off work that morning and stayed with me until she needed to go get the kids from a babysitter arranged for at the last minute. I want to make sure that I note that CC went with me to Roseville and went home around midnight, so that she could sleep some before getting up and going to work the next morning at 4:00 AM and my aunt stayed awake the whole night in the ER and also came straight to the Morse facility after briefly heading home and getting something to eat just as I was transferred to Morse.

I was released on Wednesday morning after Morse ran a series of blood tests ruling out the likelihood of any kind of heart attack. Our physician at Morse was very compassionate and puzzled by my whole plight, even appearing confused by our stagnant situation with Kaiser. My parents headed up our way Wednesday sometime to help with my care and to help manage the house while I recovered. Just stopped what they were doing and left their lives in motion in San Carlos to come up and help us.

When I was released, my K+ was at the minimum level of 3.5. We don’t know what my Phosphorus levels were during my stay this time (normal range is 2.5 to 4.5), but we do know that Thursday night, the 9th, after we went and had my labs done, my phosphorus was 5.4 and on the 11th it was 4.9. The high levels of Phosphorus help to explain the muscle pains and chemical imbalance which continue to keep me feeling like dirt, but Kaiser hasn’t treated the Phosphorus imbalance or even noted it as a concern except for Redwood City back in February where I was admitted for low levels of Phosphorus. They don’t seem to be the least bit concerned about me, let alone my lab levels which are out of balance.

I spent most of Wednesday in bed feeling like I had been run over by a truck. Thursday, after going outside to look at what Joshy thought was a huge bee, I stood up from being in a somewhat crouched position and collapsed into the arms of my mom and CC who were looking at the bug with me. Back to bed I went, still feeling like a 4 wheeled vehicle took me out.

Last night (Saturday) we went to a church service up in Roseville and then to dinner and then home to bed. Today is Sunday and we went to see Nana at her place at Eskaton since my parent’s haven’t seen her since she moved and haven’t seen her new place. We went to lunch with her and then got an ice cream afterwards and now are about to call it a day being that CC has to work tomorrow morning.

I did want to note that, months ago, my symptoms began with confusion, disorientation and then paralysis and that since February my symptoms have begun more with localized spasms, Myoclonic spasms and muscle pain throughout my body. Monday’s attack was the most severe I’ve had in quite some time. Over the past several weeks, I have had attacks almost every other day, but they have not been as severe in that CC has taken care of them herself with liquid K+ stopping the numbness and spasms.

Wednesday, August 08, 2007

Wednesday, August 08, 2007

Wednesday, August 08, 2007

I’m back at home on my bed.
It hurts to walk and stand and I’m more than tired.


No sleep while we stayed at Roseville Kaiser lying on a gurney in a hallway for several hours, waiting for a room that never came then several more hours in a back room someplace in the ER. The Roseville hospital admitting room never came and I was sent via ambulance to Morse Ave Hospital where 3 beds were squeezed into a room that should have held one bed. No sleep for another 36 hours or so.

May God show pity on me and my family and not allow any more of this calamity befall ANY of the rest of my family and my friends and may He bring rest and restoration to me and my wife and my children.

I’m so tired and beaten. No more writing for now.

Will it be better tomorrow?

It's Wed. and Ive been

It's Wed. and Ive been sent home once again being told we are on our own. This doc said his prayers are with us.

I'm home.

Tuesday, August 07, 2007

Had my aunt not been

Had my aunt not been there and my uncle willing to drive CC home in the late/middle of the night, we'd have been stuck...

My aunt stayed awake with

My aunt stayed awake with me, from the ER ride in the early evening yesterday through the night and this morning till noon

That being said, docs don't

That being said, docs don't know if the attack was cardio or K+ but whichever it was scared me seriously.
...

I cleaned some carpeting in

I cleaned some carpeting in the house and likely pushed my limits on physical exersion and the docs are ?? heart attack..

I'm back in the hospital,

I'm back in the hospital, at Morse Ave Kaiser after a scary attack at home by myself yesterday. CC called 911. Home soon?

Saturday, August 04, 2007

Saturday, August 4, 2007

Saturday, August 4, 2007

Short one tonight. Very tired.
3 attacks this week, two with numbness; Monday morning, Wednesday morning (immediately following CC's trip to the ER via ambulance that morning for chest pains, weakness, difficulty breathing. She's alright now and was released a few hours after she was brought in to the ER) and then again today after going to see a screening of a polar Ice movie for global warming awareness. After meds today, I slept upwards of 7 hours.

More on Wednesday and today later...too tired now.

Monday, July 30, 2007

Monday, July 30, 2007

Monday, July 30, 2007

Brief now; Another attack this morning following my workout. Actually, it began while I was working out but due to an office situation, no one was with me when it started, The gals in the front helped me walk out to my Aunt's van and she drove me home.
The rest of the day is more of a blur with pain, spasms and numbness weaved throughout. No ER trip this time either.

We are heading out to look at some rental properties...Limited options now.

Friday, July 27, 2007

Friday, July 27, 2007

Friday, July 27, 2007

Chronicle of Wednesday and Thursday (July 25-26)
Wednesday we drove to San Jose to pick up CC’s niece and take her and our two to a place called The Jungle which is vaguely similar to Chuck E Cheese only 100x better. Anyway, we met Angel (CC’s niece by her oldest sister Kimmy) while there from 11:30 AM to 5:30 PM, early on in our 6 hour stay, I ate a piece of pepperoni pizza and was immediately struck by profuse sweating and nausea and overwhelming tiredness/fatigue. Because of the noise level at these kid playhouses (like Chuck E Cheese and The Jungle and Bamboola, etc) I try to bring ear plugs so I can lessen the noise level and this trip was no different. I put my ear plugs in and succumbed to my fatigue with about a 3 hour+ nap and over-all weakness that fallowed me the rest of the day.
We left there and went to Red Robin where we ate sparingly and I had chicken pieces and a few fries. Cramps followed through the early evening and we ultimately made it home without incident that evening.
Thursday, however, we slept in for a little while and then got up and started our days in “normal” fashion, relatively speaking when just around noonish, while I was reading an email, I was overcome by weakness, fatigue and a sense of lack of control (emotionally and physically) and I made my way to our bed by using the walls to stabilize me and steady me as I moved down the hall.
CC came in a short time after and I was in spasms and sweating but icy cold. She gave me a dose of liquid K+ and my muscle relaxers as well as pain meds but besides the K+, the rest are all pill from and I just had to wait for them to take effect which seemed like it took forever. I gave up somewhere in the process and said I didn’t care if she took me to ER or not but she stayed with me and monitored me until my body settled down eventually. This one didn’t scare the kids as much as the times before…I guess they’ve gotten used to seeing me nearly completely incapacitated…not that that is a good thing necessarily, but in this case at least they weren’t scared that I was going to die like a couple times before.
No discernable numbness while I was aware this time, though it may have happened during the previous night’s attempt at sleep. I don’t know.

Today I awoke to feeling like I had been beaten severely with a bat or board; everything hurt, even the bottoms of my feet which were cramping and spasming distinctly this time. Today was a definite cane day and tomorrow will likely be as well.

Until later-

Thursday, July 26, 2007

another attack thismorning. I feel

another attack thismorning.
I feel beaten with a board.
CC kept me home, brought me back around.
Hard night and day coming

Tuesday, July 24, 2007

Tuesday, July 24, 2007

Tuesday, July 24, 2007

So, it’s been a little while.


Oregon:
We went to Camp Sherman, just outside of Sisters Oregon (20 minutes out of Bend) for a week of spending time with my family. My sister and her family and my parents went up on Friday and we went up Saturday and stayed until the following Saturday morning and then drove back home. Long ride home. Annie spent the time at my brother in laws in Shingle Springs and one of our neighbors watched our home and cat for us while we were away.
Highlights of the trip? We loved hanging out with family and especially having some concentrated time with my niece and nephew. Sterling, my sister’s oldest son was unable to go and we really missed him much. all of you. We spent time Shooting the .22 rifle a couple of days at a quarry where everyone (except my mom who didn’t go to the quarry with us)was a real blast and it appeared that everyone enjoyed the time shooting. We also went to a couple of lakes and tried fishing for a morning as well with no luck, however we DID see 2 bald eagles on that fishing trip as they were fishing too. That was one of the most majestic things I can recall having witnessed. I caught some of that on video and if I can figure out how to get it up on Youtube, I’ll link it in the blog for those who aren’t easily bored by family videos.
Erik being bashful and shy, of course
This is one of the lakes (at over 6,500 feet) where we kicked back for a while and CP, Kirsten and Erik all mountain biked back down to town. I'm uncertain of the number of miles they rode, but I do know they had a good time (when they remained on their bikes, that is...) Here's a pic of Joshy enjoying the lake
CP and Missy took on a Lego version of a Jet airliner while Joshy kept guard with his (then) new flintlock cap gun. The view is from the back door of the cabin rear porch, facing the Metolious River which is less than 50 feet from the edge of the back porch of the cabin we were staying in. Nice? Yeah, you could say that. Here is the view from the quarry where we went shooting a couple times. The view was breath taking even when it was showing signs of storming. I love the rain, so the clouds were a very welcomed sight. Here are Kirsten and Missy. Beauty runs in the family girls, no doubt.
Erik was making use of anything stationary to jump off of, on to, from, to, you name it, Erik went after it fearlessly, no doubt. I'm not certain, but I think E may have landed a little "differently" than he had planned. Notice the blond kid in the white Tshirt wanting to be like his older cousin?
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Reality hit back when we came home. We came back to some very, very hard news that one of our neighbors, Jerry Lemke (the guy/trucker from across the street with the diesel pick up who would bring home a semi-truck load of snow each winter/spring for the kids to play with in his driveway) died of cardiac arrest the night we left for Oregon. Dot, his wife, chose not to call us with the news fearing it would mess with our time away; she was completely correct, it would have been very hard to hear, as it was when she came over night before last to let us know personally. We went to see her yesterday afternoon and sat with her for an hour or so while she shared. I’ve been an emotional wreck over it. I considered him to be a good and loyal friend. He was only 52. Hard times to return to…harder than we imagined they could be.

CC let Annie out at 4:00 AM this morning (while she was getting ready to go to work) and Annie apparently surprised another skunk but this time only took the shot to the right side of her face somehow. I got up and we moved her crate outside and did decent damage control of the smell and then went back to bed. CC’s back and shoulders were hurting so bad that she had no choice but to call in sick to work. After sleeping in a little bit this morning, it was up and cleaning time for Annie’s crate, Annie and her blankets again. Most of the smell is gone now, but it was a very rude awakening; a smell unlike ANY other, period.

A cousin from Florida is coming in to the Bay Area to see the family there and we hope to go down there to see her and her husband and son and perhaps they may come up this way as well during their visit. I think they plan to do the San Francisco tourist-thing and sight see as much as feasible. She blessed us incredibly earlier this year and it will be even more of a blessing to see her in person. We haven’t seen each other in a number of years now…10 years I think.

The hair is gone now…I’m comfortably back to shaved. Definitely feels better for me.

Please continue to be praying for us. The emotional roller coaster does not seem to have a “stop” feature on it and we have more HUGE decisions coming up regarding our house and our future and we cannot consider everything with having His hand in EVERYTHING we do, though the emotions cloud my vision and make it really hard to see His hand at work. That’s about as honest as I can be at this point.
Health:
Each day for several months now, I sweat through between one and three shirts or complete outfits with no end in sight. When I say that I sweat through them, I mean I litterally soak the clothing to the point that it looks similar to me having been in a sprinkler and my clothing is soaked with absorbing the sweat. I wake up each morning to the sheets being saturated as well. You would think I ran a marathon.
Daily I deal with exhaustion that simply stops me in my tracks and I have to sit down or lie down. Our last trip to San Francisco proved necessary to have the wheel chair that CC packed "just in case". I cannot make it through long days of walking or physical transit.
Stress triggers episodes of exhaustion and fatigue and I feel poorly and sick.
We have changed our diet and I have no doubt that it is the main reason that I have not had to be back in the hospital now since February, though I should have gone in twice in May, but we fought my primary care physician to keep me in his office. As a result, he now triage's me in the waiting room to "head that possibility off at the pass".
Paralysis has been kept to a real minimum thanks to close monitoring of medicines and diet and an eagle-eyed wife who has saved me more than a few times now.
I want to be well and not deal with this stuff anymore. Same as everyone else who suffers from this thing.
Kaiser has no doctor who specializes in HKPP so it is not cost effective to allow me to keep the diagnosis THEY gave me back in August. For me to keep the diagnosis, they would have to send me wherever a medical center treats this disease and pay for it, so they have done all they can to remove the given diagnosis, even as far as actually calling the neurologist at UCSF, prior to my visit, to "suggest" in Kaiser's opinion that I do not have the specific disease. What do you know? The UCSF Neurologist who took the call from Kaiser Walnut Creek says I don't have HKPP but he, like Kaiser, has no idea what I have. All I have now is the August 2006 documentation from my first Kaiser neurologist that I do, in fact, have HKPP, proven by my family history and a electromuscular test he had me undergo which came back positive for myopathy. As long as Kaiser doesn't allow me to keep the diagnosis, they are not going to be out of pocket for my treatment, so it is in their financial "best interests" to keep me undiagnosed and treat me in the ER than to follow out a treatment plan which includes HKPP.
Okay, that’s it for now.

Sunday, July 22, 2007

Sunday, July 22, 2007

Sunday, July 22, 2007

We made it back, safe and sound from our family trip to Oregon with my parents and my sister's family.

I'll write more about last week, but right now, I'm emotionally nailed by the news we got today from our neighbors across the street that Jerry, the husband, died last Saturday night from a heart attack. He died in transit in an ambulance. It's difficult to know what else to say or even feel.

Pray from Dot, his wife.

We need prayers too.

peace

Wednesday, July 18, 2007

We've been having a good

We've been having a good time all together up here with my parents, my sister and family, though I cannot escape my memory

We are on our way

We are on our way to pick up some .22 shells so we can go shoot some plastic targets up in the Oregon mountains.

Monday, July 16, 2007

We are enjoying our time,

We are enjoying our time, one day at a time though we dont have all the comforts of home.
The river is 50' away...

Friday, July 13, 2007

Friday, July 13, 2007 Evening Brief

Friday, July 13, 2007

Just an FYI; For the next week the posts will be occasional and possibly just short, 160 character entries from my cell phone.

peace

Sunday, July 08, 2007

Pics from June and July

















A little game of "Keep Away" with Annie...using my hand as the toy to catch. Wanna play?













Joshua on his cousin Erik's electric chopper while we were in San Carlos visiting in June























This pic is from a Tech Appreciation Dinner that Rob put together. Not everyone was able to attend, but those who were in attendance are greatly loved as are those who weren't able to make it.
My sis (of many, many years) Kari and her husband John came and visited us for an evening and morning and I cannot begin to express how blessed I was by their visit and time with them. They live in Colorado and we so seldom ever get to see one another; this was a real treat for me and us as a family. Breakfast at Annie's in Orangevale.








This is a shot from when Scott, Kyle and Madison came to visit and we took them to Negro Bar (yes, that's it's actual name) where there are a bunch of rocks for climbing and jumping. Take a closer look and you'll spot Joshua, Missy and Madison up on the rocks.

We took Scott and his family to San Francisco and did the "tourist" thing that I wrote of in an earlier blog. The day ended up with me in a wheel chair, but that allowed us to remain a bit longer in the City and to see a bit more than we would have. Here are some more SFO pics including a Cable Car ride.













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&...