Thursday's comeback?

Thursday, September 11, 2008

today's entry is going to be via a microphone because of what's gone on the last couple of days. Last weekend, I had an attack on Saturday but I didn't have an attack on Sunday. However, Monday had an attack as well as Tuesday. Tuesday's attack took place while I was at physical therapy, and it was a particularly painful attack. Mark, my therapist, had just started to work on stretching my left leg while I was lying on my back, when the spasms hit and quickly got out of control. Because they were not able to find the potassium in my bag, they ended up calling 911 and, in no time at all, the EMTs were on site and were trying to work with me. I was unable to speak to them or see them; I could hear them at different points and have vague recollections of moments in time from that day, but for the most part, it's all just sketchy. They did not start a saline IV, which is great and I believe that was because my aunt had told them not to, as well as the fact that my aunt and my wife were on the phone at the time that the firemen came in, and so CC was able to talk directly to the firemen and explain what the problems would be with the saline.
I do have recollection that they used the siren on the way to the hospital, something that I don't recall them having used, but once before, and from the way that I was bouncing around on the gurney, I would suppose that they were driving very, very fast. The EMTs and the firemen were very caring and very kind from all that I can remember and recall. And I remembered them expressing their frustration that they couldn't do anything tangibly to help me or stop the attack from progressing. I felt badly for them as well as feeling badly that the attack happened while I was at PT causing stress on Mark and Sheri and the other people that were in there.I had forgotten to mention that my aunt was the one who drove me to my PT appointment, which is why she was there on site when the attack hit. Once I was at the hospital, I have a difficult time remembering much of what all had gone and in what order it all went. I do recall them deciding to get potassium into me, but they chose not to put it in via IV, but they stuck a tube down my nose into my stomach and then pumped the liquid potassium in that way. It was a horrible experience; being able to hear them say what they were going to do and not being able to tell them to stop and just having to go through it. While some held me down, another one forced the tube through my nose and down the back of my throat. I gagged and choked on it until I was able to convince my body to relax and that took every bit of energy that I had in the moment to give. When it seemed like an eternity after they had given the potassium, I decided that the tube had been in a long enough so I began trying hard to find it with my hands and pull it out, but the nurses caught me and restrained me and then they pulled it out for me.
Sometimes when we go into an ER, we end up getting a doctor, who will do exactly what CC suggests to him and he takes what we are saying as experience and thus he expedites the process, helping me to get over it quickly. Unfortunately, this was not one of those doctors. I believe that this attack went on a very long time, primarily due to the doctors decision not to listen to CC, but to instead argue with or repeatedly attempt to clarify what was going on with me. He told us that he would not give me any IV pain meds but would only give me pain medication orally, through the mouth. CC told him that won't work, but it's the route that he chose to take. The pain increased it did not go away. The spasms went away for a period of time after the potassium was in my stomach, but then they creeped back into place; I think because from the pain that was going on. When I was finally able to speak, I begged him to please give me a shot, at which point he relented and gave permission to give me a shot, however, he took his time in putting the request for the shot into the system, so I waited much longer than I had to. I don't remember leaving the hospital, I don't remember going home, I don't remember going into the house, and for that matter, I don't remember the bulk of yesterday either. Yesterday, Wednesday, I was in excruciating pain in my legs, my lower back, my waist, my ribs, my shoulders, my hands and my fingers; everything hurt badly. I somewhat slept through the night, though I woke up several times from muscle spasms, jumps and muscle cramps and pain. Today is a walker day and I've been on the walker since I woke up this morning. My aunt came by and picked me up and took me down to PT again and Mark just focused his energies on the upper body with the exception of doing some muscle massage on both legs; front and back, which I think was very helpful. It hurt, but it felt good at the same time. There's been no incident today with the exception that, when he had me turnover on the table, my right leg began to spasm, but I was able to focus on it and get it to relax before it caught on and began a problem. Mark said his heart skipped a beat. I am back at home, working at trying to catch up on some of the computer things, though I expect I will only get part way through all of this and will need to rest, because I'm getting tired now. I can't imagine having to type all of this in; this software and use of the mic is a real true blessing.

That's as far as I can go for the moment. I can't think of much of anything else to write at this point.

cant walk much at all

cant walk much at all now. have 2 wait 4 back/leg muscles 2 recover and strengthn. throat hurts from tube scraping. hurt.

attack while at pt. vert

attack while at pt. vert bad & painful. fast ambulnc 2 er.
tube down nose for k+. horrible but effective. now back home....

attack while kneeling cleaning our

attack while kneeling cleaning our bathrm. Very sore, back, bad headache, muscle cramps in both legs. it is hard night.

Sunday Night Brief

Sunday, September 07, 2008

Once again, I'm going to keep this brief; this time due to my wanting to get into bed sooner than later, if possible.

No attack today, though one was brewing, so to speak, but was thwarted by my ingestion of 30 meq of potassium tabs and consumption of lunch that CC *just happened to bring home at that minute*...there are no coincidence, as far as I'm concerned. The attack Saturday was most uncomfortable and frustrating. Bleh.

Watched some of the VMA's tonight on MTV...oh how the mighty have fallen...it is but a single spark of the bonfire it used to be. Now it's completely about getting Obama elected, as much bare chesting as they can arrange by their females and swearing. At one point, I understand that the main host (punk idiot, in my opinion) actually ridiculed and criticized the Jonas Brothers for having promise rings. A definite statement on how that part of the culture views Christianity. Interestingly, a following female presenter called him on the carpet for it and said something to the effect that not all girls are prostitutes, etc. It was very cool and very appropriate. Afterward, the host came out and actually apologised (feebly) for what he did. MTV continues to lose the very little respect I try to have for them. Those days are truly gone. Sad. I'm deeply saddened that the communications industries have lost almost all respect for themselves and now parade their wares as a red light district competitor. Shame on them.

We changed the lighting fixture in our bathroom and now we have wonderful lighting! Yay!

I got to see the chair ramp for the van today; VERY COOL! It will be such a blessing for us. So cool.

I've been drinking tons of water over the past several days, almost like my thirst never stops...kind of weird to me and a little disconcerting. Up towards 6 to 8 bottles in a day...I so don't get my body...not at all.

Please be praying for a friend "D" who fell from a chair (due to an attack) and she really got hurt. Broken clavicle, torn tendons, muscles, nerves...she's really hurting and cannot take pain medicine at all, so she's just toughing it out. Please keep her in your prayers and pray as you feel led. I'm not certain who else is praying for her besides us...so we need to step up for her. Please.

Tomorrow is Monday; kids go back to school and Annie and I have the house to ourselves for the morning. I'm trying to turn my body-clock around and break the "going to bed at 2am - 3am" routine.
It's 11:07...time to go.
peace

Forgot

I forgot to add that the heat I was in from attending part of Joshy's game was unquestionably a key factor in being the catalyst of the attack. I was pouring sweat just before my neck/shoulders and head locked up and wouldn't move. Spasms followed suit and the rest was *typical*, so to speak.

CC came home from the dinner get together that she went with Joshy to, and she came home with a trailer hitch-ramp/holder for the motorized chair. Now we won't have to dead-lift it into and out of the van anymore. Total God blessing through our friends. I'm so grateful that writing the words doesn't nearly do justice to my heart. Thank you guys SO much!

It's now 1:39 and I'm going to try and go to sleep quickly.

Testing

Hopefully this will show up on my blog which then means I am connected with my Facebook account as well.
Wouldn't that be cool?

Attack today while traveling from Joshua's game to Missy's game. 6 hours later...turns out, in our haste to get out of the house this morning, I managed to forget my morning meds. I screwed myself up on this one. Missed Missy's game and tweaked my system.

I so hope tomorrow will be without issue.

Thursday Night's Brief

Thursday, September 4, 2008

Yet another attack yesterday early afternoon which wiped me out for the day, but while I was at PT this morning, I was told my muscles are doing very well in spite of the abuse they take from the attacks, so at least I'm not going backwards in regards to my discernible major muscles which are tested each Tues-Thurs.

It's appropriate to note that the Fatty Liver issue I am contending with is not something that will turn bad soon or in the near future, but is something to be concerned about ever 5+ years or so and to have tracked. I felt my previous post read more desperate than it really is and I wanted to clarify that.

Tonight, I was able to order some concert videos I have been wanting for years now;

- Sting's "Bring On The Night" VHS from 1985:
This is an enjoyable and often humorous documentary on the formation of Sting's new band and their first live performance in 1985. Filmed over a nine-day period, the musicians in the band are shown bantering in their usual repartee and quick come-backs as they rehearse for the big opening night. Interviews bring out their thoughts on music and performing, and there is even an impromptu appearance by Sting's son Jake, who was born on the second night of their opening concert.
- Peter Gabriel's "POV" live from '93 VHS
- Peter Gabriel's "Growing Up Live" from 2003
- Peter Gabriel's "Still Growing up - Live and Unwrapped" 2 disc set from 2005

(...Did I already mention that I met Peter Gabriel...?) :-o) Sorry about that...Anyway, I should receive them within a week and I'm very excited to FINALLY be able to get them. Money from the truck helped to make it happen, plus I found 2 of them used for cheap but good condition. Here's hoping...

I've watched very little TV over this past week but instead have been spending much time on the computer and on Facebook. Definitely cool for me at this point.

No attack today (yay) and we shall see what tomorrow holds in store.

On to tomorrow...

Wednesday thoughts...Addendum Again...

Wednesday, September 03, 2008

I *forgot* to include in this morning's post that we sold my truck this past Sunday afternoon. Long story short, a guy who had been following garage sale signs, ended up driving down our street and saw my truck in the driveway (it did not have any FOR SALE signs on it; it was just parked on the side driveway.) and asked Missy and Josh, who were both outside getting ready to leave for a late lunch at CC's brother's house, if the truck is for sale. About 2 hours later, we had cash in our hand and the truck drove away forever. That was my dream truck. I had waited all my life to have a truck like that. it tore at me as we were in the process of selling it, but I'm very hopeful that it will now be driven every day and used and enjoyed as much as I enjoyed it for the 2 years I had it. My parents were responsible for getting it into a reliable safe driving condition and I knew at the time that we'd never get that money back out of it, but then I knew that we were not "fixing it up" to sell it, but to drive it and use it, so the money was well spent.
It brings back memories of a blue Chevy 3/4 ton pick up with a bench seat, that I used to have years back, before I broke my back. It had to be sold off while I was in recovery of my back surgeries and at the time, there was no prognosis that I would ever drive again then too. That hurt as much as this did. But now the driveway is clear, the truck is with an owner who will love it like I did and we are no longer going to have to put out any more money for a vehicle that I can't drive.
The Red Hot Chili Pepper is gone. Chris Alford named it for me, or better said, christened it moments after I bought it. The name affectionately stuck.

I didn't get to sleep until almost 3:00 am this morning...I'm definitely feeling the affects of not sleeping as much as I needed to. I did sleep for around 4 hours yesterday, but I don't think I am balanced out in regards to my sleep quota, if that makes any sense. If it doesn't, oh well. It does to me.

I took Annie for a "motorized" walk this morning. I don't normally go out with her by myself, but I want to build up that relationship with her and create more independence as much as I can, safely. I use her shoulder harness instead of the gentle leader and I'm able to hold on to her while she trots along beside me. I also gave her more leash on the latter part of the block and she did great just running in front of me while I held the leash from the chair. We had one instance where she lunged at a gated Great Dane that we couldn't see but could hear; I almost "rolled it", so to speak, but was able to maintain balance and then helped Annie "re-focus", before continuing on with our short travel. I learned a bit in that moment of balance. Fortunately, very fortunately, I did not have to deal with an attack as a result of the incident. I'm not out of the woods from it for another 2 days, but I'm very hopeful nothing will come of it. When I get a pic of me and Annie together during a walk, I'll post it. I haven't really thought of what we look like together for walks...hmmmm.

I'm connecting with so many friends and people from my past through Facebook, it is really cool for me and looks like I might be able to use it as a social outlet for me, since I cannot get out and go places on my own, meet folks for breakfast or lunch or visit them at their work and the like. At least this way I can see pictures, chat, email and just generally correspond with friends, better than I could even a month ago. I hope to find and communicate with other HKPP folks via Facebook as well. The list I'm currently on is fine and good, but it's purely black and white, email texts with no formatting, no personalization, no personality except for their written words. At least on Facebook they could share photos, images, convey personality through their design of their page and even chat with one another instead of emailing and waiting for posts to be permitted and put through. Facebook give you COMPLETE control over who communicates with you, what is communicated and how it is shared. Your privacy is assured. How cool is that? Well, I'm sounding like I should get a kickback or something from them...but I'm simply jazzed about the forum opportunity. I'll shut up about it...until the next post, anyway...

We are going to make an appointment to see my primary doc regarding my continued memory losses and see if there is anything we can do to remedy that.

Oh yeah, I believe CC spoke to my Endocrine doc last week regarding the outcome of my liver biopsy and he said the results show that I have a condition called "Fatty Liver" which means that there is excess fat in and on the liver itself and that its functions are reasonably normal for now. So, we don't need to worry about that at this point; the Endocrine folks will continue to track it and monitor it for any changes and we are to expect higher liver enzymes from here on out. there will come a point where my liver will become particularly problematic due to the condition of it being a "fatty Liver", but for now, I don't have to track those labs, they are supposed to do that for us. I'm not very worried that they won't take care of me regarding my liver condition because it is something they have dealt with in other patients and they know what to do about it and how to treat me should things change, so I know they'll be watching for that and will be pro-active, given their familiarity with it.
Here is more information from Mayo Clinic's website (http://www.mayoclinic.com) on Nonalcoholic Fatty Liver Disease (NAFLD):
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Definition

Nonalcoholic fatty liver disease (NAFLD) describes a range of conditions involving the liver that affect people who drink little or no alcohol.

The mildest type is simple fatty liver (steatosis), an accumulation of fat within your liver that usually causes no liver damage. A potentially more serious type, nonalcoholic steatohepatitis (NASH), is associated with liver-damaging inflammation and, sometimes, the formation of fibrous tissue. In some cases, this can progress either to cirrhosis, which can produce progressive, irreversible liver scarring, or to liver cancer.

Nonalcoholic fatty liver disease affects all age groups, including children. Most often, it's diagnosed in middle-aged people who are overweight or obese, and who may also have diabetes and elevated cholesterol and triglyceride levels.

With the increasing incidence of obesity and diabetes in Western countries, nonalcoholic fatty liver disease has become a growing problem. Although its true prevalence is unknown, some estimates suggest it may affect as many as one-third of American adults.

Because early-stage nonalcoholic fatty liver disease rarely causes any symptoms, it's often detected because of abnormal results of liver tests done for unrelated issues. Treatments for nonalcoholic fatty liver disease include weight loss, exercise, improved diabetes control and the use of cholesterol-lowering medications.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We've been told not to stress over it, particularly me, because it is what it is and we are actively trying to reduce my weight and control my diabetes and, hopefully next week, will be beginning to exercise on some of the PT weight machines. Other than taking even more meds, we are doing what we can and what can be expected.
I will not be afraid of this.
That is my choice and my decision.

I'll try to remember my last two attacks in more detail later on. For now, it's time to find something to eat for lunch. Maybe even a nap too...?

peace for now-

Wednesday Morning...again...

Wednesday, September 3, 2008

HAPPY BIRTHDAY SIS!!!!!! My sister Mindy's birthday is today (9/3). I wish I could be with you to celebrate. As a matter of fact, yesterday was my sister-in-law, Kimmy's birthday and my good buddy, Ray Baldonade's birthday as well. I, like a royal putz, didn't get off a card to either one. I'll see if I can send a belated E-card tomorrow morning. Everybody deserves a card on their birthday. Everybody.

Well, once again...it's after midnight and I'm just now getting to my blog. Growl.
My last post was this past Saturday, which came and went without a manifested attack, however, Sunday evening contained an attack (nasty) as did Monday late afternoon (also nasty). I figured that I would have been on a walker Monday and yesterday, but my body has been rebounding much quicker than recent past. Come to think of it, the attacks now, as well as the recoveries, are similar to back in the middle of 2006. I hope I don't repeat the rough ones form then too...
I slept for nearly 4.5 hours this afternoon/evening...just kind of passed out. While in a light sleep, I was aware of the myoclonic jerks which were hitting every few minutes, it seemed. I hate those with a passion, but I cannot do anything about them at all.

I've spent much time learning Facebook and getting acquainted there, more than I have been keeping up here. I'm sorry about that. I'll do better. Problem is that, the attacks last for 4+ hours and then I am limited as to how much energy I have to post or even sit at the computer and Facebook is a interactive social on-line network, so there is immediate gratification most of the time, when I log on.

I really want to share Facebook with the folks on the HKPP list, but I'm not sure how to do it without getting kicked off the list. Anyone who's on the list and reads my blog, feel free to check out what Facebook is. It's a very cool way to socialize even when you are feeling imprisoned by your house and disability. It's been a real blessing to me so far.

I will try to recall the past few days activities to get them noted on here, maybe tomorrow. My memory problem has hit very close to home today; I could not remember my cell phone number. I know that may seem trivial, but that's something I've never forgotten but today...well...I was stuck when I was asked for it. This whole disease thing terrifies me at different points in time. I cannot describe my fears as I realize I'm losing my memory of people, places and things...I've always been proud of my ability to remember and memorize, so it's incredibly hard to see it go away so slowly.

Ok. It's 12:58 am and I'm officially tired.
Done. Pray for no attacks tomorrow.

Oh yeah; here is my Facebook page:

http://www.facebook.com/profile.php?id=1456926742

-peace