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!