texting from bed. harsh after-effects

texting from bed.
harsh after-effects from eating lunch at Red Robin. can hardly walk & feel like I've been in a fight.

Working on Friday…Again

 

Well, I got up this morning after less than 5 hours of sleep and saw the kids off to school, but was very aware that my body was very unhappy with me; not only feeling terribly tired from the inside out, but also stomach hurting and cramping.  After the kids left, I ate a breakfast of 3 scrambled eggs with about 2 or 3 ounces of Trader Joe’s low-sodium turkey combined into it along with a few sprinkles of mild cheddar cheese as well.  Normally I don’t eat 3 eggs at a time (typically only 2) but I thought I might be feeling hunger pains so I made a larger breakfast.  After finishing, I was very aware that I was not and had not been dealing with hunger issues because the discomfort remained and increased, not decreased.  About 8:45 I got in my black chair and tried to let everything settle but was not successful.  I did manage to sleep restlessly for a couple hours, but was constantly waking up to my own snoring/gasps to breathe.  I should have gone upstairs to bed and used my CPAP machine and oxygen there, so after checking in with CC on her break (via phone; she calls to check in with me on her work break everyday), I went upstairs and tried again.  this time, I woke up around 2:15 pm this afternoon (about an hour ago) and I do feel somewhat better than I did, but I have not regained my lost sleep yet.  I’m drinking lots of water to help flush out whatever might be in my system.

As I was going to sleep last night, I got to thinking about the vocalist from Molly Hatchet, Danny Joe Brown, and the fact that he died of complications of his diabetes, and here I am, snacking on sweets when I get the “sweet” craving which is a common and regular side effect of the methadone I take, and I think, “I don’t want to go out like that in the next 10 years!  To die in my 50’s from diabetic complications…” so I am writing this down in hopes of keeping myself accountable to only eating natural sweets from fruits and such instead of small candies that I rationalize away everyday.  I know this will be very hard because I don’t feel that the kids or CC should have to forego those pleasures and thus we will have candies and cookies and ice cream in stock all the time.  I just have to be stronger and NOT stress about it.   …right….*sigh*

Please be praying for me in this long-haul battle.  I know that I cannot do it on my own but I DO believe that I can accomplish ANYTHING through my God and His Love, support and care of me and I believe that intercession by prayerful warriors will be key in any victories I may see in my lifetime.  There have been many who have been praying for God to heal me from this disease and though I have not experienced that healing as of yet, that does not mean He is not answering those prayers; it just means that He is in control of it and knows that…well…He is God and I am not and He will heal when and where He wants to for His reasons and not necessarily mine and I need to take refuge in that confidence and not wonder why I’m not getting “what I want when I want it”, so to speak.  I cannot serve somebody without trusting them, so, to call myself a Christian or a follower of Christ, means that I need to and have to trust Him and that includes trusting Him with my health, completely.  Now, with all of that being said, I’m going to continue to ask for prayers for healing and for acclimation and adaptation to the “rules of engagement” with this war against my disease, so I will know how to combat it correctly and successfully while awaiting God’s next step in my life.  I want to be healthy and I want to be restored.  I also know that He knows that too and He loves me more than to give-in to my own selfish desires, which have a physically restricted comprehension of my own life’s plans; He sees that entire picture of my life as a whole and I do not, so I must trust His decisions in regard to His acts of healing within me.

Okay.  I’ve listened to myself think out and type the above paragraph and I don’t know that what I wrote was meant for anyone else but me, but it makes sense to me and I good with that.

 

I’m still tired, so I am going to close this out and go after a smaller victory (and some cold water too.)

peace

 

Not Yesterday

 

No attack yesterday, Thursday.

Still played it low key.

Up late again…poor time management this time.

Still Standing

As it stands now, there have been attacks every day, with the exception of only a couple days in nearly 2 weeks or so.  I’m getting very exhausted.  I haven’t been returning calls or emails nearly enough, but the attacks and subsequent weakness makes what should be a very simple routine much more laborious.  I guess this is a sort of global “apology” to anyone who may be getting frustrated or put out with me for my lack of “friend stewardship”, if you will.  I’m sorry.

I had noted months ago that I was curious to see if the weather change and temperature change would have any significant effect…um…yeah, it has.

[Listening to some good old Molly Hatchet from the late 70’s and 80’s in an effort to lift my mood a bit.  These are some Good ‘ol boys from Florida.  I saw them at the Keystone in Palo Alto in the earlier 80’s and their primary attendees were bikers, especially Hell’s Angels.  I felt a bit out of place, but really enjoyed the show and the music; they never backed off from going full tilt, from start to finish.  I was impressed.  I remember thinking that they looked like roadies until they began playing…Lead vocalist Danny Joe Brown,  had their staple voice and Southern “growl” along with his “horse whistle” in many of the songs to direct the concert-goers to who was leading on the guitar, of which they would sport 3 guitars on many songs.  Many considered them a unique blend of Southern Rock and Roll with a metal edge.]   

 

Wow…I got side tracked…

I want to share this link with you as well.  It is about the correlation of consuming sodas and Hypokalemia. Granted, the quantities consumed are above average, but everybody’s systems are unique and have very different thresholds:

http://www.sciencedaily.com/releases/2009/05/090519075420.htm

Anyway, I’m going to call it a night and hope for a better day tomorrow.

peace

Of Course It’s After 1:00 AM…!

 

Isn’t this my normal time?  Oh well…

Bullets again:

• Last Wednesday I had a crash with no spasms but paralysis (I think…)
• Last Thursday I went to my 9:30 AM PT appt and did not exercise but did the stretching and massage and faired well.  Following that at 1:30 PM, I had another dentist appt, but this appt was for 3 fillings on my front upper teeth.  This was my first experience of having dental work like this done in the office and though it did not go as planned, it went very well and I did not have an attack while at the dentist’s office.  After getting home from there, I did crash pretty substantially, but the triggers were likely stress from the appt as well as after-affects from the oral sedation they gave me in pill form and the pain meds I took prior.  When I woke up, my body felt like I had danced with a train again, so I knew it was HKPP related.
• Last Friday we picked up Joshy from school after he returned from a 3 day/2 night field trip to Columbia.  He had a great time and all went well while waiting for him at school, except the heat began to slowly take me out.  By the time we were on our way home from school, I was beginning an attack which ended up closing out my afternoon as well as evening.  *sigh*
• Saturday began great but we got less sleep than desired with Joshy sleeping with us…The day remained low key and one of Missy’s friends came over in the late morning and spent the night with her.  We went to a good friend’s open house/house warming that evening around 6-ish but learned that day that his AC unit was fritzed, so it was humid and hot inside and just plain old hot outside.  I lasted nearly 2 hours before I began to struggle to breath (muscles in my chest began to seize, followed by arms, legs and hips, then face and neck.) [The feeling and recognition of slowly suffocating is a feeling of terror that is almost indescribable, other than translating it as the most basic of panics.]  As I was recognizing this, CC came back to where I was sitting and asked “is it time to go?” and I nodded.  We got part way home before having to stop and get the meds into me.  CC wheeled me into the house and got me into my black chair (THE chair) which is when the muscle chills/spasms hit because of my very sweaty and wet clothing connecting with the cold leather of the air conditioned house.  CC got me awake enough to get upstairs to go to bed, but once in bed, I was then awake and the room was stuffy and Joshy was, once again, lying in between us .  I didn’t go to sleep until after 3:00 AM.  Turns out that Missy’s friend who’s dad was having the house warming asked if she could sleep over at our house too, so Missy ended up with 2 friends spending the night and having a small slumber party.  That was cool for her.
• Sunday we did not go to church, AGAIN, which caused grief within me, but I knew at 3:00 that morning that it was NOT a very realistic outing, considering the previous day’s events and bodily condition.  The day remained low key and I chose to work on repairing the bent frame and pulled rivet in our hide-a-way bed in our couch.  It took about an hour, but I fixed it!!  These kind of small victories do my self esteem wonders; choosing a task, figuring it out and then not just working on it, but completing it too.!  I had to spend a little while in the garage looking for the right stray hardware and such and could tell that the incubator, er, I mean garage had become surprisingly hot very quickly and I needed to get back into the house before I would drop.  THAT annoyed me.  anyway, I finished fixing the couch and began to pick up my tools when I realized that I had spent too much time in the garage heat combined with the stress of hyper-focusing on repairing the couch.  I went down, but not before I got myself into my chair.  This attack hurt my chest again and also brought nausea as well and the paralysis set in very quickly.
• Lastly, and maybe most importantly, I am beginning to scope out putting together a fund raiser for this summer and I need all the help I can get, at the moment.   My first priority is to find someone who can be my coordinator and action person, who has event planning and hopefully fund raising experience.  I know that I cannot do this by myself and CC is already overwhelmed without me adding anything new to her HUGE plate.  If you think you can help me or know someone who can and would be willing to take this proverbial “bull by the horns”, please email me at v12pilot@surewest.net or audiopilotfopc@gmail.com and we can see what can work out.
• I guess I should include as well that we also need help with our back yard before June 6th.  We need to either build a deck where our current gravel box is or relocate the current gravel from the existing location to other locations, yet to be determined.  We also need some help with our sprinklers in the backyard; a couple are broken and one needs to be dug up and fixed. 

It’s a daily battle that I wage with myself and, regardless of how badly I want to be well enough to fulfill my own physical expectations, in the end, I simply cannot do these things and I have no choice but to call out for help.

I will share more about the fundraiser, the more it begins to look like a possible reality and, I will then, again, need lots of help and prayer support; heck, I need prayer support NOW!  I know that God does not want us to be worried or worrisome…but I’ve gotten good at it; forgive me.

2:20 AM…time to stop.

peace to each of you reading this, truly.

 

 

 

 

 

 

 

 

 

 

The Day after Mother’s Day

 

Why must it always seem that I begin my blog posts at the time I should be going to bed…?  Perhaps, because that’s the reality.  *sigh*

Yesterday saw no attack, and that was a true blessing.  The only physical issues notable were lots of leg and feet cramps as well as body fatigues which forced me to sit and recline several times throughout the day. Today brought an attack triggered by the heat; that sucked.  Saturday also saw an attack as did Friday, I think.  Saturday’s attack was caused from eating at the local Mexican cantina.  Even though I ordered safe, I realized afterward that the grill which the food was prepared on was likely not cleaned of from previous food orders, so my lunch became guilty by association, if you will.  You don’t have to have added salt in your entree, but, if the entree prepared before yours has any salted seasonings, there will be some amount of carry-over onto your dish, unless the cook/chef completely and thoroughly cleans off the grill between entrees; Chili’s does this when I eat there, IF I ask for the manager’s involvement.  With my system being so fragile, in terms of dietary balance, I lose every time unless extra steps are taken to prevent the carry-over.

Mother’s day was a great day!  In short (for now), Missy decided on a dinner and dessert she wanted to prepare and cook, so she went shopping with her mom and grandma and selected the dinner’s ingredients (with a little cellular help from her proud daddy) and then she kept her mom and grandma out of the kitchen while she and her soux chef [ :o) ] prepared steak and chicken kabobs with fresh veggies and grilled pineapple!  T’was very yummy, indeed and no added salt to anything.  the only unnatural salting was within the balsamic vinaigrette salad dressing we used as the meat marinades, both the steak and chicken.

So, it’s now 11:59 PM and I need to stop.

Zzzzzzzzzzzzzzzzzzz…………………………………………………

Joshy's 10th Birthday

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime® 6.5 or higher is required.

Joshy's birthday party at SkyHigh: Joshy, Kirsten and Missy

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime� 6.5 or higher is required.

Long Overdue

 

My spirits are much better today.  I woke up without the same degree of pain I’ve had for the past few days, plus, IT’S JOSHY’S BIRTHDAY!!!!!  He’s 10 years old today!!!  CC, Missy and I woke him up at 6:30 this morning by singing “happy Birthday” to him. and, with his eyes closed, he showed a big smile.  What a great way to begin your birthday; with a big smile!  He, his sister and his mommy are the true loves of my life, deeply and forever.  I plan to have some pics of him from today’s party, to post before the week’s end.  Also, Kirsten s coming up today to celebrate Joshy’s birthday as well and my mom, his grandma, is also coming up today to help be another set of hands in working with my care and household *stuff* since CC’s “plate” is the size of a dinner table! (analogy from “my cup runneth over” and I have too much on my plate to get accomplished”, etc.)  It will be a real blessing to have the help at this point.  We could not have known that Sunday's attack would be a nasty as it was.

Now, for the part of this post that pertains to being “Long Overdue”;

It’s long over due that I note on here that I am able to keep blogging and continue working via computer, thanks to a friend and brother.  History: I’ve been a laptop user for quite some time and when working, it was especially important to be able to work via a laptop for a variety of reasons, all of which are *sound* reasons…get it?  ha.

Okay, anyway, my laptop has served me well and the back up, stand alone hard drive has been a saving grace when the laptop hard drive crashed this past December.  Praise God I had all of my music files (MP3, WAV, MPEG, AVI) on the back up drive at the time.  I lost most of my Outlook emails and history, but I was able to piece that back together via our downstairs computer which also shares from the same Surewest servers, so I copied from that computer back to my laptop.

Anyway, my cousin Chris saved the day for me just after the crash by replacing the dead hard drive with a new hard drive and salvaging as much data as he could from the dying drive, which allowed me to continue working on it for the time being.  that was huge for me.  The good thing was that I had my back up drive to draw from where all of my files were safely stored…the bad thing was that I had just the one drive where all my *stuff* was stored and that drive was showing signs of old age, so my “safe” documents weren’t actually so safe anymore and I was very concerned.  I’d been wanting to pick up another portable drive as a back up to the back up, but the $$ simply wasn’t there and so, my stress levels had been creeping up on me, fearing that a crash on the back up drive was eminent and there would be nothing I could do about it.  Enter my bro and friend who called me one day, a couple weeks ago, and shared that he wanted to send me a computer.  Just out of the blue.  After picking myself up off the ground, I said alright and was humbled to the core.  It’s never easy for me to receive, regardless of circumstances and this was no exception, but I knew that this was clearly a *God thing* and that He knew of my needs and was meeting them, right before my eyes.

A few days later, a couple monitors showed up via courier and then a custom built computer with amazing features and lots of hard drive space!!!  That night, after transferring the very last file from my stand alone back up drive to one of the new computer’s hard drives, the stand alone crashed and has since been inoperable.  It was God’s timing, down to the last file and moment.  Had this computer not arrived when it did and had it not been equipped with the hard drives capable of holding all of the stand alone’s data, I would have lost everything and, when I say everything, I mean all of my MP3’s, all of my MPEGS (movie clips and files I’ve collected over several years), and most importantly and irreplaceable, all of my music files and recordings I have made and created over my musical career.  They all would have been gone that very night had that computer not arrived when it did.  This gift of a computer (with dual monitors!!) was and is far more than the giver even imagined it could be.  If he is comfortable with my sharing his name then I’ll do so, but I don’t want to share it at this point because I don’t know how he would feel about it.  He’s not one for the spot light and is much more comfortable being an integral part of the background “machine”, if you will.  I know he reads my blog from time to time and I have already shared with him via voice how much this gift means to me and to my family, so reiterating those sentiments here is fine and appropriate since he heard them from me before he read them from me. 

To each of you reading this, never, ever, ever underestimate the potential of your effort to the behalf of someone who receives your *gift* whether it be something verbal, physical, prayerful or even thoughtful.  God takes our intentional “good thing”, our imperfect effort or simple gift and produces something awesome and incredible with it, and, more often than not, allows the giver to feel or sense the impact their *gift* has had on the recipient.  I’m including a piece from Paul Stanley's (of KISS) website which hopefully correlates to you as it did for me, the latter point I was wanting to convey:

'CRITTER' GETS KISS ON THE PHONE

13th March, 2009 | CINCINNATI ENQUIRER

LEGENDARY ROCKERS LIFT AILING FAN'S SPIRITS
By William Croyle
NEWPORT, KY - The phone rang Wednesday afternoon in Christopher "Critter" Smith's room at Cincinnati Children's Hospital Medical Center.
His mom had just stepped out for a moment, so he answered it.
"Critter, it's Paul Stanley," the caller said. Stanley is the lead singer for KISS, Critter's favorite rock band.
"At first, I thought it was just my dad messing with me," Critter said.
It really was Stanley.
The band had been alerted about Critter by a fan after an article was published March 2 in The Enquirer. The article talked about the 11-year-old's battle with leukemia, and mentioned his love for KISS.
"When I realized it was really him, I was like, 'Oh my God!'" Critter said.
Stanley told Critter to stay strong and that he was praying for him. "And he told me he was going to send me some KISS stuff," Critter said.
All of that happened about 1:30 p.m. The call lasted just a few minutes, but was enough to raise Critter's spirits.
"I was lying down all day," Critter said. "Then, after he called me, I was up playing basketball in my room."
"He was on top of the world," said his mother, Carol Smith.
About 10 p.m. that same day, the phone rang again. Still bouncing off the walls from Stanley's call, Critter got another surprise: It was the band's drummer, Eric Singer.
"I was just like 'Woooow!'" Critter exclaimed.
Singer talked with Critter for a few minutes and invited him to one of their concerts this summer to see the show and meet the band.
"I've never even been to a concert at all," Critter said. "This is just so cool!"
This is Critter's second bout with acute lymphoblastic leukemia, a cancer of the white blood cells.
During five months in 2007 he underwent five rounds of chemotherapy, a round of radiation and a bone marrow transplant. Critter returned to school at Fourth Street Elementary and was in remission for 15 months until January.
He's started chemotherapy. He'll undergo another bone marrow aspiration this weekend.
The good news, his mom said, is that doctors are going to hold off for now on another bone marrow transplant until they see how he does.
"To have to go through this twice isn't fair, but I'm ecstatic he's responding to the chemo," his mother said. "I'm still nervous, but hopeful."

http://www.paulstanley.com/?module=news&news_item_id=2296

The Gift is better than the reception.

2 Days Past

Last night I slept fairly hard but woke up a few times.  What I forgot to do before going to sleep was to set my bed angles for better back and leg comfort (motorized bed), so when I woke up, I knew I had made a mistake in not having set the angles.  I didn’t hurt nearly as much as I did yesterday, but this new day saw me being as slow as I was yesterday, but without the intense pain and fatigue.  I went to PT this morning where Mark noted that my muscle tightness, on a 10 scale, was 8+; I agreed.

Flutters had been present during the appointment but began to increase as he was finishing up stretching me, so I opted for a dose of liquid K+  and some phenagren (sp?) before leaving.

Once I got back home, I was pretty tired and weak so I got into my black chair, ate some meatloaf sandwich and watched some G3 from Tokyo on DVD and slept.  I didn’t wake up fully until around 6;00 PM; these attacks are laying waste to my system for now.  But my resolve is good and my desire to live *normally*, whatever that means for me, is strong too.

It’s 9:30 PM and time to try and go to bed for the night…hopefully, I will be able to get off to sleep without any issues.

Down

This is an email I just sent to a list I belong to, that is populated by folks who contend with the same or similar forms of periodic paralysis.

Yesterday started out alright, even to the point that I felt good enough and strong enough to take Annie, our Doberman/Shepherd/Hound mix, for an extended walk/ride through our local small park. I can't walk long distances anymore without tiring quickly and triggering attacks, so I used my motorized chair; steering with my right and holding the leash in my left. My 9 year old son went with me on his bike and remarked that just the two of us doing something was special to him, since my disease often interrupts and prohibits concentrated time together. With that in mind, I did not want to have something happen to screw it up, which, for the most part, did not happen, i.e., I didn't have the attack until after having been home for 20 or 30 minutes.

While standing in the kitchen and touching bases with my wife (she had just returned from errands a minute or so before things went South with me), I began to feel *that feeling* when you know things aren't alright, but in the moment, you can't explain it. Sometimes, that feeling comes bundled with a degree of fear, which this one did. I told her I was not alright and that I was going to go sit in my black chair (a Lay-Z-Boy that was given to us and that my dad built an elevated base for, to make it easier to get into and out of under my own power or not. My dad is my hero and my champion.) and get my oxygen going (I'm on 2 .5 liters). It didn't take long before I could feel my body ignoring my intentions and commands to respond and CC brought me a dose of liquid K+ and an Ativan as well. I was able to swallow (I normally am able to swallow when not in spasms) and a short time later, I thought I was on the other side of it, like most times before. I was wrong. I remember there being a preventative sharper pain just under my left side of my ribcage, preventative in the sense that I could not breathe deeply at all without aggravating the pain, so my breathing got out of whack due to my feeling panic because I can't breathe right and was breathing more rapidly and more shallow. CC brought me another dose and another Ativan.

After considerable struggles with the pain, the muscle cramping in my chest, rib muscles, calves and feet, I was able to focus on slowing my breathing down and forcing myself to not continue to panic. CC stayed beside me throughout and I could hear her voice speaking to me and I could feel her familiar fingers moving the sweat away from my eyes and my forehead and she brought me back from where I had gone.

I don't remember the last time I had 2 attacks consecutively, back to back like that and it makes me wonder if it was actually just one attack that re-surged due to some kind of K+ flush or fragile imbalance. I'm sure open to ideas here.

CC says I'm not allowed to take the dog for walks for the foreseeable future...I guess I understand; what would have been the outcome, had this happened when I was in the park?

Today is impressively restricting from a pain standpoint and from feeling as though I've been taught a lesson by an enraged Mike Tyson...slow-go today.

 

today began with a sense of unknown forboding, but the day went along fairly qietly in most respects.
This post is to note that I took a pretty hard hit around 2something and it hit a 2nd time more intensly making it very difficult to breath. Cs held my hand and kept me from panic; legcramping complicated matters 2.

I will be down tomorrow

Sunday was my dads 80th birthday party luncheon in the bay area and because of .this fricking disease, I/we were'nt with them. That was not alright with me at all. This disease continues to cost me future memories and experiences.

I'm writing from my bed using my phone; it's 2:28 AM
Time to sleep...

This message was sent using the Picture and Video Messaging service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, QuickTime� 6.5 or higher is required.