Day 36: Do your job

Back at it again on a Monday. This weekend was a doozy. It was my birthday Sunday so my wife was nice enough to plan some things. Saturday night I played poker with the guys at our house. It was nice to see everyone and honestly just nice to relax and have a drink. Sunday morning, we got back to the Church routine. Really great service and still working through Ephesians. The topic this week was “Do your job”. As a Patriots fan it made me giggle a bit. The overall lesson was for people to do the work of God and let the other things go. We all focus on material items that will last this life and less focus on the eternal life ahead. We are here to do God’s work and we get so sideways with everything else.

I’m as guilty as anyone for that. I spent a good deal of my life wanting the new cars, new boats, etc. and spent all of time trying to be successful. Not that we aren’t here for the purpose of God but I think “Do your job” goes so much further. We all have responsibilities in life that we lose focus on whether it be our family, balance in life, or even enjoying the natural gifts that God gave us.

Everyone has heard that hindsight is 20/20 but I’m not sure we think about what that actually means. Most of the time we think about it in business decisions or other things. What if we really focused up front. What if when you walked out the front door you really embraced everything as a gift? What if you took an extra 2 minutes in the morning to enjoy the sunrise? These are gifts given to us but we right them off as the status quo.
What if we changed our hindsight and focused on our jobs with our families instead of work? Smiling and teaching our children, loving our spouse, and following our beliefs is where we should be. I’ve found in reflection that not much of my life meant much. There were moments of good but never a focus on it. I’ve tried to change that but it’s a daily process. My youngest son is by far the most sensitive member of our family. He is constantly telling others how much he cares, offering to help, and just being a great kid. My other child is living the preteen life. I know eventually my youngest will turn to the dark side of being a teenager too but it really does empower me to see the young men they have become. Those are the rewards of doing good work. I envy them though. It’s easier for them to be good people. They haven’t been spoiled by sin and materialistic things yet and yet they are still happy.

People refer to the innocence and joy of being a child. In my mind, maybe we all need to shed the years of sin and distractions and get back to that. The difference in a child and a man should be a higher responsibility in doing our jobs instead of further losing our way. Just my thought on it but I’m going to try to be more of a child. I might not go to toys r us but I’m going to try to find my innocence again and integrate a higher purpose. Just my thoughts for the weekend. Hope everyone has a happy Monday. Enjoy it!

Day 32: Hiding  

This becomes more and more of a struggle for me. When do you stop lying to others about what’s going on. I’ve been blessed so far with no major tell-tale signs except a dysfunctional leg and the random speech slurs. My leg is always a topic and everyone always wants to know what happened. I mean what do you tell people? Where do you cut the line at who really knows? I see a lot of random people daily through work and it just gets old lying. Then you wonder if you’re just doing the world a disservice by lying about it. Should people be more aware that this disease is out there. I mean we are talking about 1 in 300,000 people and to be honest between my father and myself I’m not sure I’ve had another person tell me they had ALS.

The reality is I don’t want to admit it yet but it stresses me out more to hide it. Regardless of feeling better and stronger now than 3 months ago the reality is I 99% have this disease. I’ve made my peace internally that I’m just going to ride God’s plan and live life to the fullest but I cringe every time I talk to someone about it. I’ve held off on talking to my children about this because we aren’t 100% sure and no child needs to hear that. I remember when my parents told me and I was destroyed. I don’t mean that in a light way by any means. That tore me to the core until he passed and then I was a wreck for years after that. Until I met my wife I was a professional at pushing people away and not growing relationships. To be honest I’m still trying to fix myself. Ironic that over the past 20 years I’ve shut everyone out from my feelings, find out this stuff, now I’m opening up, and one thing blocking me and bothering me is being open about the same thing that made me shut the door in the first place.

Anyways outside of that I feel pretty good. Fasciculation’s are still bugging me to death but changed up the meds a bit to help me sleep. They might tone me down a bit too much and the past 2 days have dragged too much. Lastly, I got my test results back for vitamins/levels and my vitamin D is still low. I’ve been taking 4000iu’s a day of D3 and just don’t get this. Body is just not processing well right now but everything else was in line.

Day 30: Stay Positive or Die Trying

So, I am continuing to stay on the gluten free diet and am feeling differences in my mental and physical energy. It’s almost like I’m 100% awake all of the time. I’m happy to have the energy but wow would I love to sleep. I take 10mg of melatonin every night and by 3-4am I’m wide awake again. My mind just never shuts down. It would take me 5 cups of coffee before to feel the way I do now 90% of the time.

So yesterday I went to PT and evidently, I’m showing some coordination improvement which I can slightly feel too. I boosted some of my reps that are to fatigue and she seems encouraged by my progress. I thought she might have not been paying attention but I went for my one month clinic visit today. My right-hand strength went from 106 to 110 and my left hand went from 84 to 110 which is a 50% increase. I’m trying to not get too much hope up that this is just celiac but I feel great. My blood pressure came back to reasonable levels, pulse is lower, and overall my body seems to just be performing better. I didn’t show any changes in other movements so in the words of the doctor “no change is good change”. Evidently, I should be showing some progression but it doesn’t seem to be there.

My fasciculations are going crazy but I was told that could be from stress, lack of sleep, or over exercise. I’m probably a bit guilty on all fronts. Work has been nuts, I don’t sleep more than 4 hours, and I’ve pushed myself a bit too hard. One PT there did say to not over exercise but don’t rob yourself of what makes yourself happy. Boom that’s me! I enjoy working in the yard and I like to go wide open sometimes especially at work. I was even told to slow down my walk a bit.

Overall, it’s all encouraging to me which is what I need right now. I will fight whatever this is and I will fight hard but my mental state is what I want to really keep healthy right now. I was told that I couldn’t be put in any trials because my diagnosis is only 99% and not 100%. In my mind that’s a win. Maybe it’s just delaying the obvious but your saying there’s a chance!

Day 25: Do what you love

So, I’m taking a short break from a semi-crushing day. Seems like I’ve been on 60 hr. weeks for a while trying to get a job done. Its wearing on me a bit but my wife and myself both like to work even though it wears on us. So, I’m sitting at work last night talking to a vendor at around 7pm. He’s probably one of the hardest working guys I’ve ever met. Always on top of it and always has a positive nature. I’ve been giving him grief over not working late on our stuff. He responded back saying he would do this even if he won the lottery. I’ve always had the same outlook. Maybe I wouldn’t go at the same speed but I love my job.

So, I feel like I’m doing that right now. I’m playing against the house with time but I’m doing something that I love. My only regret about work is when it interferes with family life. I’m trying to balance that but it’s tough with deadlines and limited help. Regardless I sent him an email to set a reminder for us to talk about this in a year.

My advice is to do what you love and accept nothing less in a career. We could all die tomorrow and this moment is all you are guaranteed in life. I’m not sad about my outcomes because God has a plan. That may sound silly but God has a plan for all of us. There are far bigger tragedies in this world than someone living 33+ years comfortably and enjoying it. Children are having bombs dropped on them so it would seem silly for me to sulk over the life I’ve had.

The sadness I do have is for my family and what they are dealing with. That’s pages of words I’d rather not describe but we are trying to enjoy every day and keep the smiles rolling. I’ve been unusually perky since diagnosis day but I have had moments of frustration. I had one this morning and my goal is to further improving that.

Other than that, everything is peachy and I hope everyone has a killer day. Keep the smiles rolling and grab the bull by the horns.

Day 15-23: A normal Week

I took a week off from writing. Some of it intentional and some of it not. Work has been busier than usual and trying to finalize some projects. I did however want to take a week off to live “normally”. It helps sometimes to take a step back and not think about things. It was nice and really helped me focus on work.

As far as how I feel I have really been feeling good until Sunday. Felt a bit of a pep in my step so to speak. I’ve continued to eat healthy but do struggle with eating enough. I’ve subsidized some snacks and meals with smoothies and shakes when we are on the go but generally have tried to eat a real breakfast and make a conscious effort to eat whole meals.

Saturday night I got knocked down a peg. I’ve been gluten free and haven’t had a drink in weeks. Actually, seem to have regained a little movement in my calf and my fasciculation’s were down to a minimum. So, Saturday night I go out with some friends for a buddy’s birthday. I’ve been a bit absent from seeing people and trying to collect my thoughts so this was a first for me since I’ve told anyone about the ALS. Had a really good time and it felt good to let loose for a few hours. On the way, the panic hit and I had no idea what I could drink. Google to the rescue! Vodka tonic it was for the beverages. Ordered a nice grey goose and tonic with a lime and sipped away. Had a salad for dinner which absolutely sucked since it was a wing place. Just not the kind of place you trust to ask for something Gluten free.

So, I have two drinks and start heading home. Keep in mind this was two drinks over 4 hours. About a mile from the house I noticed my vision was blurry again. Before I started eating differently I would get double vision on dark nights. Nothing horrible but the glare off the street lines was awful. Felt a few fasciculation’s and thought I just overdid it that night standing up for hours. Went to bed and a few hours later woke up in excruciating pain. Cramps were hitting and shooting pains down my legs like someone had a knife in my foot. I felt the same way a few weeks before when I ate some bread and just wasn’t thinking. Oh, wow did it keep going.

Sunday I was curled up in the fetal position. To this point I’ve thought some of the Celiac stuff was just in my head. Like oh I’m a feeling a bit better and maybe it’s just my imagination. After some quick searching, it turns out potato or grape vodka is gluten free but wheat vodka like grey goose still has traces after being distilled. It was almost a relief to know I’m not crazy but the pain was definitely real. Monday was a real drag to get up and I still felt the effects. Still having bad fasciculation’s but the cramps are gone.

Monday is PT day but I haven’t seen my therapist since my evaluation. She really pushed me today which I needed. The last PT I saw was a 400lb woman who didn’t seem to care what I did. This one challenged me to push it a bit. Pretty great feeling until I limped to the parking lot. Felt like years ago, when I’d hit the elliptical until I was jello. Definitely took a few hours to get my legs back under me.

Overall besides the accidental poisoning I was taking steps in the right direction and learning how to eat. The wife was great and took me on a Gluten Free food finding mission. We did miss church on Sunday which I was disappointed in but I just felt like crap. Overall I still feel very happy and centered which is new for me. I’ve always felt off balanced and things just seem more in front of me know. Going to try and continue on with that.

Day 13 & 14: The Weekend   

I’m sitting here on the porch and its 70 degrees in February. Not a bad gig. Yesterday I woke up wide open. Proceeded to hit up some yard work trimming all the hedges and cleaning up. I’ve come to the conclusion we have too many bushes. I love working outside and sliding some headphones in and relaxing does wonders for me. The kids when outside all day to play with the neighborhood kids which is something I need to push on them more. It’s important for them not to miss these days in their lives. I say that but they are probably upstairs playing Minecraft and taking it easy today.

Anyways I got all that done and decided to keep rolling. Washed and waxed the truck because its looked like a hot mess since the winter storm. About half way through that my body called it quits but pushed through it. Man, do I feel it today. Just last week I was told to not push myself until it hurts and today it took some major power to get up for church. Regardless I really enjoyed it and God has blessed us with some beautiful weather. Wish I didn’t feel like I got into a fight with Mike Tyson or I might go another round today. Overall that was a great day. Kept pumping my body full of food and finally got my calorie intake up. My goodness it’s hard to slam in 3000 calories. Evidently the doctors want to plump me up.

Today we got up early for church which I’ve really come to enjoy. My mood wasn’t great and I just generally hurt. Our normal Pastor wasn’t there this week so we took a break from the scheduled sermon. To be honest I wasn’t listening the way I normally do. I wasn’t taking it all in but something caught me. The Pastor discussed how Christians tend to expect new Christians not to fall down and compared it to parenting a child. We can’t expect a child to walk on day one. Also, another hot topic was how we think we are working for God instead of walking with God.

I spent a great deal of my life thinking I believed but not following anything close to what God would want. My treatment of people was subpar to say the least and while I tried to be a good person I was selective in that to say the least. My wife asked me a few weeks ago, to make a list of things I wanted to do in my life if it were to be shortened and I couldn’t think of much. The things I want are out of my grasp right now. I want to run around with the kids, I want to go out to the lake to swim. My biggest want in life is to walk up a set of stairs or better yet run up them. I want to do all of the things that I didn’t appreciate enough before all of this. I have my regrets in how I treated people but I have very few regrets in things I’d want to do. I’m not a person who cares about sitting on some exotic beach or climbing the highest mountain. I was so content in my life but not appreciative enough.

So, when asked to list those things they are short in dream vacations, etc. My list is to be a better person, to try and mend some of my mistakes, and to be more of who I’ve always needed to be. Our failures in life are what make us who we are. I don’t regret a lot of my mistakes because they took me down the path of life to find my wife, to find my children, and to find a lot of success. My regrets are the harms to people that I caused along the way. Those are the regrets you can’t take back but can try to mend and mitigate in the future.

So to tie all of this in I don’t want to work with God and will work on that. I’ve tried to do small things like making people smile and trying to be a better husband but even these steps are hard. I’m stumbling but trying. Maybe theres hope for me physically. Maybe I have Celiac and not ALS. Maybe I have both but can help or reverse some symptoms. Maybe 5 minutes before I die there will be a cure. Maybe none of that really matters. I know my life doesn’t end on this earth but it does scare me. Not because I don’t believe but becasuse I see my past sins so much more clearly now.

I’ve posted several times and told myself for my entire life that I was emotionless and that it was on me to provide my happiness. The truth is I was doing it all the wrong way. I was focused on being the best at my job or buying material items and that made me happy. The truth is I had it so good and didn’t enjoy it enough. I found frustrations in others. Like Christians need to help others from stumbling I needed to help others more and let others help me. I’ve stumbled so hard and never let the help come.

I missed that Boat by so many years but if you are reading this grab the help, help others, and walk with God. Everything material means nothing. It’s a farce of false happiness but the truth is all around us.

Live it, Love it, Cherish it. To throw in a little Dave Matthews Eat, drink, and be merry for tomorrow we die. None of that is literal but the figurative nature of it is so true. Go home and hug your wife, hug your children, and appreciate the steps God gives us.

I’ll end with this. I’ve questioned why I’m writing this blog and others have to. It’s self-revelation and the hopes that someone will read this who needs to. Even in writing this I’ve realized my sadness today is a wasted moment, a wasted gift, and yet again I have stumbled. I love you all and want to share that.

Day 12: A Mixed Bag

So, this Celiac thing has me all jacked up. Do I have Celiac? Do I have ALS? Do I have both? Do I have time to think about this? Does it really matter? Can you’ll get this biopsy done like yesterday?

Hope is a powerful thing and my nerves are shot. Work is going 100mph and I’m trying to keep it all straight. Today has been probably the worst as far as symptoms go. Stomach is having spasms, pins and needles in my other leg, fasciculation’s are hitting like a hammer, and I just can’t think. The past few weeks I’ve had massive blanks in my memory. I don’t mean like “oh where are my keys?”. I mean like what is my birthday or not remembering someones name who I’ve known for years. I’ve dialed back on my happy pills over the past few days but it’s not helping. The double vision has been absurd too. It’s mainly at night but its bothering me occasionally and randomly.

Its early in the afternoon and I have scrapped work for the day and just popped a melatonin. I’m just in total overload. The overload isn’t work or anger or anything like that. I just feel like I’m full of high, lows, and every mix of emotions. If this post gets weird I’m about to fall asleep by the way. Houston the melatonin has landed. I hate to scrap a day but at 4pm but its opening day for ECU baseball so I have another good excuse to lay down, relax, recoup, and enjoy some Pirate baseball.

Day 11: Let’s get Weird!

So today was interesting. Lot of test results came back from the Clinic visit. For one my Vitamin D levels are far below normal. Highly odd since I drink 4-6 glasses of milk a day, take a multi vitamin, and have been eating so clean. Going all WebMD on it and it could be amplifying my symptoms like fasciculation’s and cramps. Seems to be a big problem with ALS patients and speeds up progression. Second my celiac test came back abnormal so I get to go have an intestinal biopsy. That sounds awful but Celiac can actually mimic ALS. I could also have both.

Overall the results were weird enough that I got a direct call from the doctor. Was told to take 2000 iu of D3 a day and they would retest at the next appointment and a biopsy is being scheduled. Basically, Celiac could be an ALS mimic or I could have both. The crazy thing is I was told those who have both have been treated for the celiac and in a few cases the ALS symptoms have stopped in progression or actually reversed. We are talking slim here but just another chance at a positive.

Work is crazy right now but my mind is right. The call did send me into a google dive for the last hour of the day and I’m sure I’ll be into it all tonight. The fasciculation’s are out of control but less bothersome at night. For those suffering at night Melatonin is a God send. I haven’t slept this well since my kids were born. Its helped with focus and really feel driven during the day minus the mind cloud I’ve been in and short term memory loss. Evidently that could be a side effect of the Vitamin D deficiency. We’ll see how that progresses.

All the possibilities are cool and keeping everyone upbeat. Maybe just a stay in execution acceptance but hope is a heck of a driving force in life. I hope everyone else had a great day and we’ll keep taking this thing one day at a time!

Day 10: An array of reactions

One thing that’s become glaringly obvious to me over the last week and a half is how different we are as people. We all react to different things in such different ways. My family has slowly discussed with close friends, coworkers, and family. I have a history of ALS in the family so we have had a 20-year head start on a lot of people on how to deal with feelings. To be honest I think a lot of my lack of emotion is due to this. I was so young when my father was diagnosed that I barely remember it. It’s all very spotty to say the least but I honestly can’t remember the day I was told. Regardless I’ve always been lacking in my emotion. I had a lot of anger issues but it takes a lot to legitimately upset me in other ways. I tend to worry less and try to be more deliberate in my actions to prevent emotions.

Over the past week and a half, I’ve seen so many different reactions. Shockingly my mother has processed this so well. Maybe she’s hidden a lot of it from me, maybe she just knew it was coming, or maybe her faith is just that strong. She has been great which is saying a lot. We have had rocky times throughout life just like most families but she responded with “if anyone is going to beat this it would be you”. While I know, this isn’t something you can really “beat” it is something you can fight. That meant a lot to me. Others have been almost angry and others have gone over the top with the condolences. Maybe I’m a robot or maybe I just know God has a plan but the over the top condolences make me want to vomit. I didn’t lose a child or suddenly die. I have lived a blessed life and accomplished a lot. Bottom line is if I’m not crying for myself why not join in the smiling for a while. Let’s save the sadness for later down the line and live life like there’s no tomorrow. Do God’s work and move onto the next day.

This isn’t a post about me or my feelings it’s a post about life and people. We as a people wrap ourselves in our sadness and the bad things in our life. We become infatuated with the things we can’t control and lose sight of the gifts in front of us. Everyone gets knocked down but not everyone gets up. What if we took getting up a step farther and looked at the getting knocked down as an opportunity to stand back up? What if all the potholes in life are just reminders to appreciate a smooth road? Bottom line is if you get punched in lip let that swollen lip just be a bigger smile.

Day 9: Happy Valentine’s Day

So again, I’m a day late and a dollar short. Was just beat yesterday so catching up today. So yesterday was the big day of the first clinic visit. What a long day that one was. Got done at 3pm after showing up at 7:45am. We met the entire team and did every test possible. Pretty much received a 99% confirmation that its ALS but still doing some testing for some deficiencies etc. It wasn’t exactly how you picture Valentine’s day but I spent the entire day with my wife regardless. She’s such an angel and dealt with my issues all day.

Good news overall is I’m the healthiest dying man ever. Strength is there everywhere but the leg and starting PT next week to see if I can regain some of that. So much to take in but a lot of hope in the fact that I’m in great health otherwise. I’m starting on some new meds for a month so I can be eligible for trials if my other tests don’t rule out some mimic of the disease. I think everyone was shocked I still had strength all over. Hoping the progression stays slow and can actually improve some.

My only two gripes of the day were the dietician and the girl taking blood. First off I have a problem taking diet advice from an obese person. I’m not saying that really affects her ability to do her job or diminishes her knowledge but I used to workout religiously and really watched my nutrition. I was never ripped but could go 120% on an elliptical for an hour. Basically, told me to take in more calories and not to worry about what I’m eating. Let me say I stopped listening right there. You are telling me that my body is attacking itself and I should go eat cheeseburgers? Not going there. I had pizza last night out of laziness but have stricken any other processed foods from my body. Maybe they tell you that since they don’t want people to not enjoy the small things like eating. My thing is the whole process is about hope and kicking butt. This isn’t a sentence for me it’s a challenge and Burell’s never back down from a challenge. Reinstalled my diet app that I love. If you are looking for a food tracking app Lose It! Is the bomb. It has a lot more data for foods than other products I’ve tried.

Overall, she was trying to calculate caloric intake I should be at and I just laughed. I told her 2600 baseline but was going to go for 3000 with a new workout regimen. ALS eats calories and I’m taking Coconut oil at 6 tablespoons a day which is roughly 700 calories and a protein shake which is roughly 450 calories. So, you are telling me you want me to only eat an additional 1350 calories divided between 3 meals and 2 snacks? I’ve lost 4 lbs. in 3-4 weeks on healthy eating to create a 180 baseline which is 25% body fat roughly without major calculations. Anyways I wasn’t impressed. I’ll keep a log and throw what I find under the nutrition page. I was also told to stop the supplements so I can get on trials. I don’t have a problem ditching some things so they can create baselines for research but I’m also not going to stop things that I have found to help. Anyways I’ll dive deeper into nutrition later. I’m not an expert by any means but I’ve managed my weight & nutrition in depth for years.

The only other person I had an issue with was the poor woman for bloodwork. I’ve probably had blood taken 100 times and never had a person miss a vein. I have veins like a heroin addict. Ray Charles could take my blood while simultaneously playing stairway to heaven on the piano. This woman missed 5 times and was “fishing” once under the skin. Thought I was going to jack her up. So now I have EMG bruises and I appear to have a heroin addiction……..SUPER!

Knocked out the appointment and headed back to the office to knock out some work. Rest of the day was spent on the phone telling people things we already knew. My wife was upset obviously but she’s my rock. Hit a few hard patches through the day but she popped that smile right back on. Smiles are a contagious thing and a day shouldn’t be spent without lots of them.

Only other thing that became the joke of the day is that they now offer a program to record your voice. Basically, you speak into a mic and read a few hundred sentences. The program allows you to type later in the progression so everyone hears your voice instead of a robotic voice. I am joking but I need to mix in some Morgan Freeman or Optimus Prime. I told my wife my last words (hoping they never come) may be Buzz Lightyear saying to “infinity and beyond”. Not sure she found it humorous but if you can’t laugh what can you do?

Now I’m going to go knock some work out. It’s going to be a wonderful productive day!