My apologies.......

I want to first apologize to everyone for not posting anything yesterday. The following is not an excuse, just an explanation.

Yesterday was really tough for me. I woke up, felling OK, but as soon as I got moving around; zap! No energy, no drive, no desire, no nothing! Yes, I did have something. That "something" was aches & pains all over! I had to wait till my son came over to bring me breakfast, for him to open the pain med. bottle, since I couldn't. After breakfast & one pain pill; I didn't wake up until 12:30 pm. When I woke up, I got caught up in lunch & arraigning a phone appointment for today. After lunch, cat napping until Sharon got home at 6pm. Dinner was brought to me, thank you Mike, and then I helped Sharon refill our meds, then Charlie & the Chocolate factory and a shave with my new shaver, thank you Sharon, then bed time.

Today, a bit better, No pain pill and I am posting on the blog.

As for where I left everybody hanging on Monday: Here is why I am angry with BOA in general there lawyers, specifically. When we were told we got our mortgage re-modification, we were told that the one last thing we had to do was come up with and forward to BOA by 6/14/10 was the $2000.00 the lawyers want to settle there bill for BOA! A big concession since there last bill was ten times that amount!

So after discussing this situation with Sharon on Sunday evening; We have come to the conclusion that if we can raise that amount, we can save our house. If not, we move in with somebody, either Mike or Steve or some cheap trailer in Alachua. Now this $2000.00 will be a stretch. We blew thru our savings and our EM fund, when we remolded our house & moved in. We sold everything of value on eBay. The wetsuit that recently came back & has to be reshipped, is the last item of my scuba stuff. We are living more of a paycheck to paycheck than ever before!

Since I lost my income in February of 2010 & we found out my SSADI was fixed and scheduled to not start until August 25, 2010. My monthly check will be right at half of what I was making when I was working; this transition has been tuff & depressing. That doesn't even include the Medicare Part B premium! Sharon & I have gone from loving our lives to hating our lives. Not life itself or even our lives together; just life in general & feeling POWERLESS to change it! We are very aware that one or both of us could slip into a depression, so we are constantly on guard to this evil.

We are not in a position to BORROW this money because, frankly, we don't know if we can pay it back or even when we could pay it back, at all! Sharon's sister Sandi Fentress has offered to be a fund raiser, so if anyone feels led to contribute; her number is 352-636-1996. I believe her email is frentress@comcast.net.

This is our LAST option. We are asking for Medicine, in the form of whatever you are led to give, after reading this. It can be anonymous or not; it's your choice. We just need it by 6/14/10 or the Sheriff gets a sale date from the clerk of the court who gets it from the bank. I know it's NOT PRETTY, but that is the reality of the situation.

In conclusion, In this mortgage re-modification program that Congress has funded twice, I believe; the ONLY people that truly win are the lawyers. That's not surprising, when lawyers came up with it, a lawyer signed it into law and lawyers reviewed it and put there blessing on it. By the way, that $2000.00 is two months of mortgage payments and the payments wouldn't start until August of 2010. Mike & Madeline have been considering moving in with us for two months now. To help with my care & all of our financial needs, by merging two households into one. We & us can not to anything until this is resolved.

I think the place to start is where Shakespeare says in Hamlet, "Kill all the Lawyers.........."

Love & Peace to all, Gene

I am happy & I am peeved........

Good morning to all! Now, here is the happy part. I noticed we are up to 15 followers; that's GREAT!!! I had no idea I would get that many people that would be interested in reading what I wrote. I really appreciate everyone that follows me on this blog.

Now, onto the peeved part. I hate to bring this up BUT; I have to get it off my chest. I am peeved at one group of people; the Bank of America lawyers. We got our mortgage remod, BUT........


I am going to stop here for three reasons: 1) My hands are very tired, 2) this subject upsets me & I need to get into the position to be able to vent & 3) so I keep you folks hangin & I have something to write about tomorrow..................... Grace, Love & Blessings, to all, Gene C. (TBC)

Things on my mind............

When I got up and around a few minutes before 7 am this morning, I felt tired and my arms felt very rubbery. Now it's after lunch, I am rested and fed. I am not so tired, but my arms STILL feel like rubber. I hope this is not a permanent feeling. I will probably double up on my muscle relaxer tonight and use the hand splints that help my hands when they really curl up. If this is what I have to endure to have as much time with my family as possible; then YES, it is worth it. I love my Wife Sharon, My three adult kids, Becky, Stephen & Mike AND my 10 grand-kids and the soon to be grand-kid-in-law Natasha; and I want to spend as much time with them as possible. It's Friday and Star Gate Universe is on at 9 pm. Hopefully the sky will clear up and allow, Sharon Lynn, Mike and myself do some Star Gazing tomorrow night. I saw a Yahoo news brief that both the ISS and Atlantis will be visible to most of the US this weekend right at dusk & dawn. Something to look foreword too!

Now onto what's on my mind: There is nothing new in the World, a quote from Solomon and I would like to add there is nothing sacred in the world. The reason I say this is because on the Yahoo news brief this morning I saw a story stating that they were planning on bringing a remake of the venerable TV show known as Hawaii 5-0 on! Plus, they redid the theme song and gave it a 21st century style and sound, which I liked. The purists out there didn't like either option, but I think it might be around for a few seasons. That is the "nothing new in the world" piece because the film & TV producers are remaking more & more shows!

Now for the nothing's sacred part. I also read on a separate Yahoo story that some nutritionists with a cause are bashing Ronald McDonald and want that clown pulled. The CEO of Mickey D's basically said NO! Now, Ronald is about the same age as I am (50 years young) so he is a 50 year old American icon. You just don't mess with a 50 year old American icon!!! I have a personal spot in my heart for Ronald because way back when, when I was into clowning about 3-4 years; I interviewed for Ronald's assistant for the Orlando Ronald McDonald. After missing that spot by one decision (the clown wanted me, the SR. VP didn't, so the other guy got the job; shows you just how much they listen to the clowns that are in the know). Eventually, the assistant becomes the next Ronald McDonald. That would have been a SWEET job.

So nothing new in the world and nothing is sacred. My wife came in as I was writing the end of the previous paragraph and she added, "and no one cares either". What a crappy world we live in at times. I am just glad that we are not of this world, we are just visitors for a brief time.

Well Danny from the Barnes Health care Service just finished adjusting my power-chair. It's the neatest thing since sliced bread! He did it on the ALS loaner, power-chair and he took all the time needed and did everything that it took. It was so nice of him to dovetail it on a visit to Chiefland. Thanks Danny! And kudos to Cindi Pettio, who is a private practice Occupational Therapy Therapists, for taking time to bring the Hoyer lift with her last Wednesday night. It does fold down! I plan on using both of those professionals when my medicare kicks in.

Well that's all for now folks. I plan on taking the weekend off, unless Sharon does go into work on Saturday. If she does and I have energy I might to a weekend post. Love, Grace, Blessings,Hugs and Kisses to all, Gene

Attitude adjustment.....

Good morning to everyone! Twelve followers & going strong! Let's keep the referrals up and the feedback coming. Thanks!

I was told last night, by two different women; one that has been in my life for 28 years. The other, I just met; that I needed an Attitude adjustment! It was done, in both instances, in the most loving and the most professional and helpful manner. I really needed to change my attitude about my disease & how I look at it.

Now, when I get the same advice from both ends of the woman scale, I listen. I don't like too, I don't want to, but I do, for one very good reason: I have learned that to do so is in MY best interest! It has only taken 50 years of life and 28 years of marriage to come to that realization; but I guess I am a slow leaner. Better late than never, I say.

The specific attitude that I am talking about is my attitude towards my disease of ALS and using durable medical aides, like walkers, wheel chairs & power chairs. I am constantly comparing my "Performance today" to what it was back in Jan/Feb/March of this year and realizing how much ground (abilities) I have lost. That's because this shi**y disease has taken away so much and given so much that we didn't want; that I don't want to give up ANYMORE abilities with out a fight! But, am I fighting a lost cause or something entirely different? Do I need to fight at all?

According to these two women ( I know, I keep coming back to women, but in general I like women and specifically, I LOVE the one that I have been married too for 28 years!) I am looking at it all wrong. After processing what was said in private and at the ALS Gainesville support group meeting; I have come to the conclusion that I need to give myself some GRACE. As a matter of fact; I GIVE MYSELF PERMISSION to have some of Fathers Grace!

My original attitude, deep down, was based on a version of shame & regret. NOT anyway near the best attitude or yardstick to measure ones performance. Father doesn't do it, as a matter of fact, I know, for a fact, that Father is into grace big time, which is the opposite of shame! The kind of grace that brings tears to my eyes just thinking about it. The kind of grace that turns pain into beauty; in this life AND the next. The kind of grace that is shaped by the most powerful versions of the most unseen but most important things in this life and in the next: Faith Hope and Love from the Father!

Now, with this grace from Father, by & because of my Brother (Christ) and carried by the Spirit (Holy); I feel empowered, I feel re-energized. Hey, I've got a life long hall pass, I've got the ultimate NOTE! And what makes it SO VERY MUCH SWEETER IS THAT IT KEEPS ON GOING, like the Energizer Bunny!

I am reminded of the parable of the workers that grace will never make sense, so don't try and get into the performance thing again BECAUSE my grace may look like nothing like YOUR grace. Besides, we do not have to perform for Father; he loves us just how we are, sins and all!

GRACE doesn't make sense. Just like Faith, Hope & Love does not make sense. And for the last BUT; Paul said we know in part and see in part, but when we get to heaven, all will be seen, all will be known (my paraphrase and I still don't have my Bible to check the reference). This is why I am using my walker this morning and when needed; I will use my power chair. I have shifted a position, I have found my Cheese!!!!!!!

So, it sounds like this is the end of the thought & heart line of my questions. Isn't it nice to know that grace is at the end?! Grace that 1) Doesn't make sense 2) Is individual , 3) Keeps on going and finally 4) Is freely given from above. All I have to do is give myself PERMISSION TO HAVE SOME, GRACE........... to all and have a nice weekend, Gene

New format & Moving on.....

My wife finally got a chance to look at my blog, yesterday and she suggested that I would need to change the format of my postings to avoid sounding too preachy AND to included some info on how I am feeling & such so I can give a well rounded report to friends and family. So here goes something.......

I just got a call from the ALS nurse at the Mayo clinic about my clinic visit next week. She did a FRS test (Functionality Rating System) on me over the Phone and it was 32 out of 48 possible. I have taken one previously, but I don't remember what it was, but I know it was higher. Just another confirmation that this damn disease has taken a little more from me since the last test which was in March or April. I will find out next week, what my breathing ability is now vs. what it was in mid-April which was 74%. In Feb/2010 it was 84%.

I would like to make a comment about Doctors and playing it safe. In the MDA research articles published yesterday for there May/June magazine; the first two articles dealt with the recent discovery by ALS researchers that our immune system may play a greater role in ALS that first thought. There was a seperate article that I read back in March on how some MD/ALS patients are taking Low Dose Naraxon (LDN) to jump start there immune system with promising results with there MD/ALS. Since there is not an official drug trial with LDN; my Doctor WON'T prescribe it for me. The nurse stated he gets questions all the time about stuff like this. He's afraid of doing more harm. Well what more harm could he do? The LDN has been researched to the point that It has no side effects at the 3-5 mg range that is used for this. While I can understand his position; I don't think he understands mine. This is not my fight. I don't have energy for it.

All this week I am battling increased fatigue and stiffness. It's like I have lead in my butt and I am sooo stiff, it's takes me more than normal (my normal) to get up and moving. I know this is the way this #$@%^& disease is BUT I still don't like it! My challange today is shaving and showering. I am down to once a week or once every two weeks. I might do a clothes change in there if I start smelling myself.

AS for my posting yesterday; I am going to let it stand on it's own for a while before re-visiting it. It feels right in my heart BUT it's only part of the answer. For some reason (the Holy Spirit maybe) the story of Job pops into my mind. Specifiably, the part about where Satan goes to God about what Job will and will not do if he is afflicted or his situation changes for the worse. Father put boundaries on what the enemy of my soul could do to Job. Is this the same case for me, all of us, outside what we bring upon ourselves? Please, everyone consider this spiritual position and give me feedback.

One Doctor visit with my GP doctor and my first ALS group meeting today. I hope a nice diner out with my wife is in there somewhere. I am getting a Hoyer lift from the ALS loan closet in Jax after the group meeting tonight. Now, if I could only get the $600.00 from the ALS Guardian Angels group for the wheelchair lift! That is what my friends and family need to pray about, for me.

That's all for now. Look, more followers; we are up to 11+1!!!! Love Hugs & Blessings to all, Gene

Let us not be discouraged.

I wrote this blog post a few minutes after finishing yesterdays, post because it is a continuation of yesterdays, thoughts and encouragements. Here is the scripture verse that made me thinking.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 2 Cor 4:16-18

To me, a very relevant and powerful statement and a GREAT piece of encouragement. One of those simply powerful phrases that I wish I wrote! I would like to focus on the second sentence in this verse. I agree with the first sentence, because it is a promise; Father gives me the unseen HOPE, in the form of encouragement, to go on in a new day. He does this thru the renewing of my mind (Romans 12:1, I think) "...For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all..." This is what I want to focus on:

Evidentally my sufferings with ALS (not the day-to-day sufferings I create, cause or bring onto my self. Those are relevant, but not for this discussion) are creating an eternal glory that far outweighs my trouble WITH ALS! This is very intriguing! Is this the reason that Father created this process, when sin (I know he new it was going to happen) came into the world, this eternal glory from the suffering we endure? Is this the mechanism that he creates Beauty from the Pain?

I am writing this blog post on Monday, so I won't lose my thought tomorrow, and I can process these thoughts all through to Wednesday morning and beyond a little more easily. The last sentence, as far as I am concerned, is the key: To focus, consider, THINK OF, the unseen, which is eternal not what is seen (the suffering).

So based on this scripture verse, I am suffering with ALS NOW, so that Father may create an eternally and glorious beauty from my current pain that will be MUCH, MUCH MORE than the suffering of the disease and it will last forever when I get to be with him in heaven!

I am going to stop here, to make sure that I am not way off, blowing smoke or whatever. More on this Wednesday. Love, Blessings and Hugs and Kisses; be encoureged, Gene C.

What we Hope for.....

Good morning to all. I would like to note we have one more follower on this blog, YEAAAAAAA!!!!!!

It's a funny thing, what we hope for at times. The simple things, the serious things, the silly things, the things that matter to us the most. I would like to suggest a slight refocus on what you & I (we) all hope for. Yes, it's OK to plan, hope, expect. But let us emphasize or refocus on just living in the moment.

When Jesus said "my grace is sufficient for you" he was talking about THAT moment (I believe). All that the Father promises is today,. Yesterday is gone and the only two things yesterday is good for is regret or encouragement. Tomorrow has enough trouble in & of itself and Jesus tells us NOT to worry about it. Thus, today is what matters in the framework of what we are to gauge our hopes, dreams and expectations by. "Now these three remain, Faith, Hope & Love, but the greatest of these is Love" (2 Cor)

Those are the things from above, that we can not see, not the things here below that we can see that Paul encourages us to focus on. This could turn out to be a major paradigm shift. If I sound cryptic, I am still figuring it out, myself. Soooo, I will try and increase the clarity of what I am saying, this week......I Hope.

Love, Blessings, Hugs & Kisses to all, Gene C. p.s. this doesn't have to be a puzzle! Check out this link to a similar article on another blog: http://www.thebridgemaker.com/

Good morning to all! Three more followers which is GREAT! I will make this short in honor of the Lord's Day: I love Him, I love Him, I Love Him! I am NOT angry at Father for allowing this disease to affect me. I do fight with anger, for it not to take over my life, like sooo many ALS patients have. I would like to know why? That's all.....What supreme purpose or "Value" (those of you who went thru the process know what I am talking about) am I to get out of this experience?

I saw a clip from a movie released recently, Letters to God, where the grandfather is talking to the kid with cancer and the postman trying to figure it all out; The grandfather, played by Ralph Waite, from the Walton's fame, tells his grandson that he, the grandson, was allowed to get that disease because God has the "Most important part of his life" to play. I am sorry, BUT that is too pat, too easy and too simple. It might work for a 9 year old kid and a 30 something guy that doesn't get it; but IT DOESN'T WORK FOR ME!

I am looking for Why Me and why THIS disease? What am I to do with it and Will HE choose to heal me? Or, is this the disease that will take me to my grave, much sooner than I anticipated. I keep coming back to the crippled guy at the pool of Bethesda (I don't know the reference because I can't find my Bibles) that could not get to the bottom of the pool when the angel stirred the waters to get in and waited some 30 years for Jesus to step over all the other cripples to find HIM! I don't know if it is the SPIRIT directing me or my spirit reaching out OR BOTH!

This didn't turn out as short as I hoped, BUT I do hope you folks get the idea. Please, please, please invite YOUR Friends and Family to check out his blog. Love Hugs and more, Gene

The second thing that frustrates me is........

This is day two of the life of this blog and I already have 2 Dear friends and one soon to be family member who are followers, Yea! Now, because I want to be clear about the things about ALS that frustrate me; I plan on highlighting the top 5 or so, before moving onto something else.

The second thing about ALS that frustrates me is how it has changed my life!!! (Folks, I just want you to know this is going to be a $%$#@!&* of a post) because ALS has changed my life so much for the negative, that it's hard for me not to be angry about this situation. Here are a list of things I had to "STOP" doing because of ALS: Cave & Cavern or any type of diving, I had just started into U/W photography too! My job and we lived were I worked, so we had to move after 8 years & 4 months. Sex became a major chore and energy drainer & that's all I going to say about that. The quality of my life went down because of the elimination of my income (the SSA 5 month waiting period really sucks! Let's get the congress to do without there pay for five months & see what they do with no income & no savings.) I can't travel like I used too, I have to get out of the car & walk around for 15 mins. or so, after a 3 hour or more drive. Also, about that; I don't have enough energy to shift my weight around on a memory foam cushion while in the car! My speech has slowed way down as well as my though process as well. I have fallen more times than I can count & that fear is always with me. These are just the 3,4 or 5 top things that aggravate me about ALS. There isn't room to go into detail about EVERYTHING!

As a result of ALS, my lovely wife of 28 years has taken on allot more things (tasks) of our life together than she should or is at times capable of. Without going in depth too much out of respect for her; the financial issues and having to ask for help from just about everyone, has really bumped her Fibromyalgae up to a new pain level with migraines to boot! It is causing her to be sick allot and she is hourly not salaried. Fuhermore, her life has changed more for her, than for me, in my opinion.

Now, I know that my heavenly Father operates on Grace and not shame. I am just trying to make sense of the Why!?! That is what I am struggling with right now, today and for the past two weeks. I have asked for help in this area & I know that if I seek, I will find, knock and the door opened, ask and the answer will be given.......! (Now please, don't give me any 1/2 as*, flippant answer designed to make YOU feel good and that will PIS*** me off. I have become aware of those type of answers so my advise to the world is this; If you don't know what to say, don't say anything!) more to follow, Gene

My first Blog posting

Well, this is my first attempt at blogging, so here goes. In this first posting I will try and describe my greatest frustration with ALS.... Not having the energy to do everything I want to do in my life. Everyone that is healthy never thinks about how much energy a task will take. Why, even typing this blog takes energy from me that will catch up with me at the end of the night. And it varies day to day. This day 5/14/2010 is shaping up to be a bad day because I had to take a pain pill. Only one so far.

I would like to clear up a myth. Most websites state that ALS Pt's feel no pain. That is simply not true. I get a low level 1-2 general ach in my hands & limbs. If I stretch my arms past where the spascisity allows me to comfortably do so, my pain jumps to a five! It is theorized that this low level pain is due to specific irritations of the motor nerves that are being irritated already from the ALS

Back to the fatigue issue: I would like every one to stop and think about this. Let's say you were at Disney World's Magic Kingdom and you had to walk from the front entrance to the Merry-go-round in fantasy land; I could not do it. I would have to use my powered wheelchair that the ALS Jacksonville Loan closet lent me. Try and conceptualize that for a moment. If I tried, I might get half up mainstreet and then have to set down for about a half hour to "recharge". By about mid-day, I would be wiped out and have to go back to my hotel room to re-charge for 2-3 hours , by sleeping and taking a muscle relaxer, because the more I move about; the more I get jammed up or get stiffer. Who would want to go to Disney World with me except those people that really love me and understand and that would help me. More to follow in the coming days. Love to all, Gene