Up Periscope...

Tuesday, April 29, 2008

It’s hard to figure out where to begin tonight…I guess I need to begin with just apologizing for not having updated this for so long. Each day brings it’s own “excuses” for not simply sitting down and typing out what’s in my mind, but the bottom line is that I haven’t and didn’t.

Missy is in Oregon till tomorrow on a school field trip. That is incredibly hard for me to have her that far away. I’m very uncomfortable with it, but I know it is just the beginning of her stepping out and learning knew things about where she’s gone to and about herself. It’s just that she’s daddy’s girl and he’s having a hard time with her absence.

On the health front:
Where to start that doesn’t already look like familiar ground?
Wanna guess what’s currently the list of diagnosis’s:

- HKPP

- Hyperaldosteronism

- Hyperphosphatemia

- Hypoglycemia

- Sleep Apnea (considered severe including 00:97 second gaps between measured breaths in their Sleep Lab)

- Hepatitis B (?)

- Chronic Back pain

- Diabetes Type II

- Progressive Myopathy (front and back arms {biceps and triceps, etc} and legs, quads and thighs

- Myoclonic Jerks

Last week CC and I went to Kaiser’s South location Pain Clinic and most of the way through I suffered another spasm attack in front of the doc and her staff and we were coded (coded means that while you are in a hospital facility and you begin suffering, the person in charge calls for an ambulance and EMTs). I’ve had this happen to me half a dozen times or more now and each time it happens, the doctor in charge sees their view of “the elephant” and thinks they know what I’m dealing with, as long as it is not HKPP, it would seem.

Because of the negative experiences and treatment we have had in the various ER’s, CC tries her best to keep us out of them, but sometimes they are out of her control and we have to go as a result of other circumstances

Bottom line is that I seem to get hit by one kind of attack or another at most every three days, of not daily, and these attacks nearly always don’t end up in the ER but happen in a restaurant, a car while traveling, in a meeting, during church service, in a doc office, while having the labs drawn, or even after eating a meal turning out to be high in salt or high in sugar. CC and Missy will carry me out (as inconspicuously as possible as to not panic the natives or said establishment) to the van’s front seat (if the kids are with us) and we head straight home to the couch or bed followed by more medicine to prevent the attack’s progressive nature. If left alone with no meds, I likely pass out from the pain and/or the physical exhaustion. The medicine intercedes where my body cannot.

I cannot walk medium to long distances anymore; I am almost always in a wheel chair that we have here at home. I walk with a cane now every day due to regular weakness in my right leg/side. I’m going to have to accept the probability of figuring out how to pursue one of those 3 wheel scooters so I can gain some mobility back. We’ll see.

We have a home care nurse who comes once a week to take labs and get a general assessment of how I’m doing and help us progress beyond the Kaiser wall. She’s a wonderful lady who knows her stuff and more than anything wants to see me well again. She is and has been a blessing.

My mom has been up here now nearly a week helping me get along and being invaluable in her care of me and us. I think she’s heading home tomorrow where she will simply pick up running from where she left last week.

Speaking of invaluable

My Aunt Judy has shown incredible attention and has gone far, far beyond the normal boards to met my and my family’s needs during these past 2 years in particular. My Uncle Norm has done the same while also volunteering weekly at a variety of places where he has become well needed and appreciated. I cannot imagine adequately showing them how much I appreciate their love for me and my family. When I end up in an ER, 9 of 10 times my Aunt (and sometimes my Uncle too) is there when I arrive or very shortly thereafter to help CC any way she can.

On the “So what do they think now?” front:

Barely more than they did before, with the exception that a GI doc is trying to prove or disprove me suffering from Hepatitis B…that’s a new one. A few more labs and he plans to make his educated opinion known. There is a possibility that he would do a liver biopsy, which I am in great favor of because then they can actually work with the liver itself instead of lab tests which is little more than a bloody True or False game with my blood. Average lab draw is between 8 and 14 tubes per visit. Average number of needle pokes to locate veins is 2 to 3 and as high as 4. I’m what the labs call “ a tough stick”; my skin is thick which frustrates a simple needle intrusion and the veins in both my arms are scarred and blown, meaning they cannot yield a fruitful draw and then they have to stick in the back of my hand or at the knuckle of my index fingers where a vein crosses over from the finger to the wrist.

I don’t look forward to the lab draw with the one exception of a lab tech named Dwayne who has never failed me (1 stick typical, 2 sticks rare. I consider him a friend even though I don’t know his last name. He’s got tattoos all over; arms, neck (front and back) and looks like he’s been there and back and we hit it off the first time I met him. He remembered my name the next time I saw him, probably a month later, even before getting the lab paperwork.

I wish I could stop all my meds and just clean out my system, but the fear of that following unknown is more than I can deal with, not the least of which would be the crap I would get from the nurses on the hospital floor who would be taking care of me as a result.

Each time I have a spasm attack or a paralysis attack (those have been more at night than in the day time), the muscles affected by the attack are permanently damaged by the potassium. This is called “myopathy” which I tested positive for back in 2006. Life right now is surreal to me. I’m feeling like I’m waiting for God to catch me up in His huge hand and tell me that the test is over and though I probably got a barely passing grade, that I’ve passed this part of my life and my family’s life and He will heal me back to independence and breadwinning with a renewed vigor for spreading His news through the skills He’s given me.

…Just not yet. Just not yet.

Indebted…

There are so many of you that I have not followed up on replying to emails and voice mails; Jared, David, Steve, Chris, Rob, Aunts and Uncles and cousins back East, My bro Harry, my brother and Encourager Art, my example Karl, my blood Kev, my true, true friend Neil- my brother for life as well as other brothers mentioned…the list goes on and the weight of the mere letters causes me to sink lower in my chair.

Please forgive, those mention and those not.

Bob and Carolynn…we remain speechless with undeserving hearts, broken in gratitude…

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Certainly there is much, much more for me to pour out from thought but not tonight.

A question though, before signing off: who knows of a software that would allow me to speak into a computer mic and have those spoken words converted into text in a Word Doc or text file or so? This ability would prove very helpful given my situation. If any of you can point me in the right direction, that would be a blessing.

And now, for this evening’s understatement: I miss you; hearing from you, seeing you, texting with you, even visiting with you. When you can, email me when you’ve a minute or two.

Well, I’ve thought, phrased, rephrased, corrected and typed now for two hours.

fíne

Sorry...Friday, April 11, 2008

Friday, April 11, 2008

Life is still challenging I know I'm better off than so many people who are suffering from the varieties of impairments from car accidents, drive-bys and all of the varieties of cancers, but as I ride out my daily pity parties, that perspective is difficult to maintain.

Attacks are every other day, between minor to major, but I have not been to the ER in the past 2 weeks, which is a good thing, regardless of my mood.

For those friends who live near by, it would be cool to see you if your schedule will permit. Most of my days are spent recovering, lying down or being seated.

CC needs your prayers for strength and endurance being that everything is up to her.

More later.
w

New week

Tuesday, March 25, 2008

Not much energy to write with.
I was released from Kaiser this past Saturday after a 6 day stay and am no closer to finding an answer than before I went in for chest pain and shortness of breath.
I'll write more later, but for now I am depleted of energy and clear thoughts.
If you have CC's cell, you can update with her directly or can use emails to contact her about what's going on.
Most outings are in a wheel chair, short trips with a cane anyway.
Hard to watch this happen before my eyes and before the eyes of my family. Hospital stays become scary for all involved.
Visitors are always welcome; check in with CC first if possible.
I love my friends and am thankful consciously.

Excuses, Excuses: Thursday, March 13, 2008

Thursday, March 13, 2008:

I guess this is what I meant by “more later” from my last entry.
February and March f this year (so far) have been medical roller coasters which in their high points leave me feeling astonished at how close to “normal” I feel. At their low points find me in an ER, on a gurney with an IV in one arm, my wife holding my other and me wondering how they’ll stop the pain this time and will they listen to my wife?!

Yesterday was a low point, having been at a Kaiser facility in Lincoln for a couple Ultra Sounds to be done to further rule out concerns when another episode took over and being that this Lincoln facility is a very new facility, I imagine my situation was the most action they’ve seen in some time. My aunt was with me at the time while CC was at work until she got the call from my Aunt or the nurses and then she left for the ER in Roseville. Prior to my being loaded into the ambulance, my Aunt wrote with a sharpie on both of my arms “NO SALINE”. Indeed, this episode from start to finish involved no saline, praise God.

During the ambulance ride I had a hard time breathing with the oxygen mask on; I wanted more air than it would provide giving me a profound sense of suffocation, a sense that I would not like to experience again.

A few days before that we were at my doctor’s office for a follow up and catch up on my status when I became profoundly sweaty and tired. At an earlier appointment, I had asked him to remove a couple “skin tags” (kind of wart-like growths) and he said to remove them was a little painful in that liquid nitrogen is used and prayed on the tags which can cause a burning sensation. Well, I got through that process and I wanted him to see them while at this next appointment and he noted that they needed spraying again but this time the pain of the burning experience was too much and it triggered an episode then and there. 4 hours, and 4 shots (pain meds and anti nausea and muscle relaxant) later CC was able to take us home and I once again didn’t get the license of the truck that ran me over…everything hurts from feet to hands to mouth to eyes. As for feeling like writing, that desire was fleeting and not very convincing. My apologies.

CC wrote the following to my doctor after I suffered another attack/episode on Thursday 2/28:

“Thursday Wade woke up with numbness in his right hand. I gave him his morning meds and told him to call me at work if it didn't get any better. He phoned me at 11am, speaking really slowly stating " I don't know what to do". When I got home I found him on the floor in the hallway. BP 120/80, BS 184, muscle spasms and chest tightness and pain. I gave him the Ativan, Liquid Potassium, Percocet and put on the CPAP. It took 4 hours before we could get him moved to the bed. Then on Friday he had another overwhelming weakness episode when he tried to walk to the bathroom. The chief complaint is complete weakness all over his body and the chest tightness and difficulty breathing. We are doing the inhalers and Motrin for the breathing. If it continues to happen I will have to go to the ER, but we never seem to get good care at the ER and it is so frustrating.”

It was very strange to read that well after the fact; almost surreal in a way.

Church was very good this past Sunday, and I once again, felt as if he was speaking directly to me, conviction of both a positive and uncomfortable nature. At any rate, it was good to be there and in attendance.

I guess, if you are willing to read into the above 3 larger paragraphs, you might read reasons why I have not kept up on the blog and please know that I feel badly not having kept up with it. I’m hopeful to do better as I go along.

Your prayers are still coveted.

-w

A Listening Change

Saturday, February 23, 2008:

A couple posts ago I included a list of songs the kids have been listening to, which included a song called “Crank That Soldier boy” which I had not researched or scanned because of the innocuous dance that seemed to be at the heart of the song, but after some digging into the lyrics, the song appears to be sexually based and the dance just fronts the song’s acceptance. So, after all of that, it has been removed from listening options and I have scratched the surface of explanation to the kids so that they understand the purpose of my actions without me having to dissect the song for them, explaining each phrase and its meaning.

It is certainly possible that I have misunderstood the lyricist’s intentions, but if so then let it be my mistake and I’ll live wit knowing that my kids are being deprived of a questionable song.

If I’m right, then shame on the writer for targeting a dance audience for his smut. Period.

Big Uncle Kevin came over this morning and stayed for the day and early evening, bringing with him Brittney (17) and Austin (13). More than just bringing the presence of his family and their love, he brought with him a calm to my internal storm just by sitting and talking with him and laughing with him, remembering with him and receiving his loving hugs as only my little (big) brother can give. You know, I just realized the origin of the comforting familiarity of Kev’s hugs; they remind me of the hugs I used to get from Ben Clanton. Ben was my Youth Pastor for a time while growing up at TPC in San Carlos. Ben was stolen from all of us while he lived in Arizona or Nevada, I can’t remember which one…anyway, he was murdered by knife by a youth he had picked up along the road who had wanted a meal. None of that is particularly relevant to Kevin with the notable exception that his hugs feel like those of my very long, long ago friend and big brother, Ben. Wow. What a revelation to comprehend, yet it is pretty simple at the same time. Kev stayed for dinner and just left a short while ago. He took the kids (his and mine) to John’s Pizza place/arcade but it was packed so they went to Sun Splash and played in the arcade for a few hours while I slept. I began to fade before he and I had lunch and after I ate, my body called it quits and I had to take a nap for a few hours (which he said he was expecting and prepared for, having brought his laptop and work with him in case). I need to catch up on sleep; I’ve lost a bit over the past few days.

My brother. May God richly bless him and keep him safe in ALL that he does. He’s head of security for a hospital out in Sutter so his safety is often on the line on any given day at work.

Please be praying for his wife, Chelle, for her continued recovery from some hospital stuff.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Strange symptoms;

The past couple days have included hardcore heartburn which has been somewhat tamed by Gelucil.
I have not been able to go to sleep until nearly 2:00 AM the past couple nights.
I’ve gained back all the weight I had lost last year (now I am back up to 247 where I was at 225 at one point)
Same old exhaustion that comes on very quick and leaves me unable to walk and talk.

More later-

Sunday night, Feb. 17, 2008

Sunday, February 17, 2008

No hospital stays or ER visits, of which I'm blessed to avoid.
Bouts of weakness, near fainting spells, complete body fatigue and general body spasms with localized chest soreness and pain are now nearly daily but spread out.
My parents came and visited this past week, leaving for home today. I had some truly wonderful time with both, especially with my dad.
Hero?
yes.

I'm still uncertain as to why I am to carry and contend with this ravaging ailment which leaves no moment of any day un-scarred, but then, I'm not blind am I? I'm not dying on a battlefield. I'm not in a coma. As far as we know, cancer and tumors are not in play with me, yet so many others live through those stated alternatives. Some don't live.
Whatever I have, it has to be reckoned against the truth that I have a wife who does still love me in spite of what seems now to be a "jip-deal" on the husband clause (for better for worse), I have a daughter and a son who I can't possibly treasure more than I do and have done. I have parents who are still married well past 50 years and still in love.

May I have the stamina to write more tomorrow and the good sense to follow through with the urge.

The emails that come to encourage are blessings and warmth to a cold, mixed up constitution and body. Thank you for writing them.

-w

Yes, I'm still here...Sorry for the laps.

It's Tuesday, February 5, 2008

I’ve let a month go by without writing. I’m sorry for the laps.

Seems that I have attacks now on a daily basis toward the late afternoon or evening and being that I usually write in the evening, writing has taken a backseat to my recovering on the couch downstairs or upstairs in our bed. At least these attacks are smaller in nature and have not required ER attention so far but they are debilitating none the less and a tremendous stress on CC and the kids. My energy simply runs out regardless of where I am or who I am with or who is visiting. It is now nearly common that we may have a guest over but I am unable to last through the visit, often requiring a shot of K+ and then being down for the remainder of the visit. Typically, the visits conclude before I wake back up or recover. It used to embarrass me more than it does now. I guess if I was to dwell on it much then I would become angry with it and take even more objection to it than I generally do, however that will get me nowhere and I know it.

On the lighter side, the kids are listening to more and more music from the radio and school dances now so I find myself needing to find the songs they enjoy and then editing them in my audio software to remove or obscure the objectionable words/lyrics. Highest on their lists right now: “Underdog” theme song from Kyle Massey, “The Way I Are” by Timbaland (edited), “Low” by Flow Rida featuring T-Pain (Seriously edited to choruses only…the verses were to full of “stuff”, “Bartender” by T-Pain and Akon and Chipmunk’s version of “Crank That Soldier Boy”. It’s not an official Chipmunks but it’s similar and they like it.

Movies to see (that I think are worthy): “Stranger than Fiction”, “Man of the Year”, “Pirates of the Carribean 1 and 2” (I haven’t seen 3 yet), “Underworld 1 and 2” (not for the faint hearted) and “Batman the beginning”.

We also watch “Trauma: Life in the ER”, “Iron Chef America”, “The Dog Whisperer” and a fair variety of other cable shows.

Well, it seems that I have reached my maximum for sitting and typing. I’ve hung my head to “rest” a few times now with minutes passing while I “rest” so I’ll work my way back to the bed up here and hope that this will suffice as an acceptable blog entry for the time being. More later-

Tuesday January 22 PM

Tuesday, January 22, 2008

Still hanging in there.
Bronchial issues have lessened but not given up.
Attacks Thurs, Friday, Sunday and Monday though none landed me in the hospital.
More later...maybe tomorrow...? Energy is low.
Sorry about it being a while since writing.
-w

Continued...

It's Tuesday, January 9, 2008

I get so tired often when I'm working on computer stuff that I simply hang my head down to stretch and rest it but then have difficulty mustering the energy to raise it back up again. Seems silly huh? I was walking up the stairs a few minutes ago when I saw a piece of gum wrapper on the stairs so I stopped, took hold of the railing, reached down and picked it up and as I began to look at it, I began to lose my balance and had to grab the other rail to steady myself before continuing up the remainder of the stairs.

I still have body shocks (Myoclonic jerks) when going to bed or just resting on the bed or after long periods of sitting, like when I’m working at the computer, and to say the least, they are frustrating to experience. FYI, the medical field recognizes that hiccups are Myoclonic jerks of the diaphragm. Learn something new every day.

Now is a time when I wish we had a hot tub or Jacuzzi bathtub so I could sit in it and relax all my muscles at once with the heat but not have to contend with the cold air upon getting out.

It is hard for me to keep my train of thought when typing (like now) and especially when I’m listening to someone. CC sees it immediately that I’m struggling, normally even before I have recognized it myself. One or both of my eyes slowly begin to cross and the eyelid begins to slowly close against my desire to remain focused including eye contact.

There was a situation that happened Sunday night where I nearly passed out from the pain I was experiencing and managed to call out for CC who came and helped me to stand and she called for Missy who came and they both helped me get back onto my bed. It was the worst pain I can recall experiencing, and I don’t wish to recall it. It has come to pass that I have to have my phone with me regardless of the room I go into, just in case. It feels like my independence is ebbing away slowly, and I can’t stop it but only watch it go.

I have a nurse who comes on Mondays or Tuesdays and on Fridays to get my blood draw/sample and check me out, run my vital signs, etc. She was here yesterday and it took three tries to get the lab drawn because the veins in my right arm blow out/collapse under the stress of the draw so she succeeded in drawing it from my Left arm, but it provoked a topic we have discussed which is to pursue having a medical port put into my chest so we can do away with the arm, wrist, back of the hand pokes for the weekly labs. Sometimes I have to have my labs done daily if I have become particularly weak or if I am over-run by HKPP symptoms. So the real consideration now is to have a medical port placed into my left or right chest so all IV’s blood draws and labs and such can be easily accessed with minimal pain to me. CC’s mom has one as does her niece, Angel.

I came to the realization this afternoon while talking to CC just before she left to pick up the kids from school, that many realities are well underway, it’s just that I haven’t accepted a number of them yet because I don’t want them to be true. As I verbalized that, she didn’t say anything, just gave me a hug of confirmation.

I’m going to try taking a bath for a little while, even though I don’t fit into the tub very well; baths have had a relaxing effect on me over the years. We used to vacation in Monterey at a place called The Cypress Tree Inn because they feature a couple rooms which were 2 room suites each with a hot tub IN one of the rooms, including a fridge and cable TV in the room with the hot tub. Their rates are prohibitive now, but there was a time when that was affordable and considered “relaxation”. Now we shoot for a few nights stay in an Embassy Suites hotel with an indoor pool so that the kids can swim night or day and I can melt away in their hot tub if it’s not too hot. Wow. What a digression. Haven’t done that in a while.

One of my best buds gave me a gift of a webcam which I plan to hook up sooner than later and once I do, I’ll make available the contact information so that those who read this, that have the same capability, can connect up for some video chat perhaps.
Yeah, so until later with more energy, peace.

Holiday Pictures: End of 2007