It’s not all sunshine and rainbows

ALS with Anna Vol. 8

It’s been a rough two weeks. I went to Mayo for my 3 month check up, April 25th.. The whole trip was a dumpster fire. Now mind you we look forward to our trips to Jacksonville and to Mayo. It is like a mini vacation. We enjoy driving down together. We order DoorDash and chill. Plus we also LOVE LOVE LOVE our ALS team at Mayo. We have grown quite close to them. So the trip is usually great for us. We are tired when we get home, but also rested if that makes sense.

So to start out I had even questioned if it was worth it anymore. Due to the fact of all the planning it takes to get all three boys seen about and our animals looked after. We depend on one of my cousins, my mom, mother in law, my caregiver, and my aunt sometimes as well. So there are a lot of moving parts or people to make the trip happen. It is also a lot for Jason to load, unload, and organize to take me anywhere. To be honest I was feeling guilty so many people had to rearrange their life just for me to go to the doctor. It truly takes a village. I am extremely grateful, but It’s a lot.

Then I had hoped to have my mobility van fixed in time, but that didn’t happen. So that meant Jason, my husband, had to pick me up and put me in the truck every time we got in and out of the truck. That was even more on him. It is not good on his back since he has had two back surgeries. ALS has taken a toll on his back, but he keeps on pushing through for me and the boys. I don’t know what I would do without him.

We also found out it will cost several thousands of dollars to fix it. It has a lot of miles on it and it’s a 06’ model. So then comes the dilemma of do we fix or look at another one? Let me tell you they ain’t cheap. It’s like they are made of gold.

However, The traffic down there was great. When we got to the hotel things started going sideways. The lady at the front desk wouldn’t let Jason check in since it was in my name. He explained to her our situation, me having ALS and not able to move. She didn’t care. He told her We stay here all the time and this has never been a problem. Nope, she did not care, and made him come get me out of the truck. Mind you I am barely understandable because of ALS. So he comes and gets me. I get inside and she greets me with a blank face. No I’m sorry or at least a smile. She ask me for my ID which I don’t have. I had 3 other cards with my name on them: debit card, insurance card, and my Sam’s Club ID. she said none of that would work. We have stayed at this hotel over the last year and a half. In April, we were there for a week while I was in the hospital. At this point Jason is upset and I’m starting to panic. She is not trying to help at all. She has a I don’t care attitude and acts like we are out of line because we are mad. Jason is losing what little patience he had left. We asked to speak to a manager. She tells us she is the only one there. Jason tells her how ridiculous this is, in a not so polite way. She makes like she is going to call the cops on us. I’ve asked if there is anything we can do. She just ignores me. Then out walks Kenya, our saving grace. She saw Jason and Jason saw her and Jason said, “ Kenya baby where have you been.” Relief flooded me. Kenya said,” Mr. Lewis calm down, it’s going to be okay, I got you.” The other women huffed and threw my cards back at us, and said, “ I don’t have to take this” and stormed off. Kenya apologized and got us checked in.

Unfortunately, even though I booked online for an ADA room they were all gone. Kenya spent 20 minutes running around looking for a room that would work. She found a suite with a big enough bathroom to get my Wheelchair in and out. The only problem was the shower and toilet were not ADA. So getting me showered about did us in that night. Jason was hurting so bad after the shower debacle he didn’t sleep well. So I didn’t sleep well. Not having ADA accommodations made our stay very difficult. An ADA room has enough room for the wheelchair, a higher toilet, and a roll in shower. So you can understand why our stay was an extra strain on both of us. We both dread each time I had to use the restroom, but at least we had a room.

The next morning we went to our ALS clinic. We are both extremely tired. Jason can feel the effects of having to pick me from the tube the night before. Clinic lasts from 8:30 to 1:00. I also had a Botox appt afterwards. While at the ALS clinic I meet with 5 different doctors all in a 30-45 minute rotation. By doctor #2 I start hurting, Jason is already croaking. We ain’t worth killing at this point. We end up seeing a different neurologist than usual. So I felt like he did not really know me and my journey. Plus I was so tired I just wanted the day over. I didn’t ask questions that my regular neurologist would have told me. Like how my respiratory levels had changed or stayed the same, how my neurofilament test had changed, and what he thought of my overall progression or lack thereof since our last meeting. I didn’t have the energy to catch that doctor and probe for the answers I was looking for. Or maybe I just didn’t want to know the answer. I was just down and out. Honestly, I felt like there isn’t much they can do for me at this point. That’s kinda how each meeting with most of my doctors that day. Except for social services we got a lead on possible resources that might be available to get an electric hoyer lift..

We wrapped up with the clinic and we went one hallway over for my Botox injections. That is one great benefit to Mayo is I can get everything done at one time and in one place. I got injections in my jaw muscles, chest, and abductor muscles. The outcome we are looking for is relaxation of the targeted muscles. I will report on that when I know if it helps or not.

After that we came back to the hotel. It was almost 3:30. I had Jason put me straight in bed. I ordered DoorDash and fell asleep. When it got there we ate and got back in bed. At 5:30 I ended up taking Tylenol PM. I had a killer headache. Within 20 minutes I was out. I slept like a Koala. Hey, did you know koalas sleep 20-22 hours a day. Making them the sleepiest animal in the world. Sorry I was channeling my inner Justin Danger Nunley. I love his videos. If you know him you will get the joke. If you don’t Google him, you are missing out.

A week prior to my clinic appointment I started experiencing pain at my feeding tube incision site. So we had an appointment at 7:30 the next morning with radiology to look at the placement and make sure everything was okay. I was so tired I couldn’t make the appointment. We woke up at 6 o’clock, but there was no way I could get up and get ready. I told Jason and we went back to sleep and slept until 10:30. Then Jason packed us up and we came home.

I even slept on and off the morning until 1:30. I was whooped. Jason ended up getting sick a few days after we got back. He is still fighting that now. It took me a week to get over the trip, but now almost two weeks later I’m in a better place. I got stuck in a little funk. ALS is a process or journey. I try to stay positive, but sometimes life piles up on you. You just can’t let it keep you down. Life is too short to spend it unhappy or depressed. I plan on living the best life I can and loving as much as I can.

Pro Tip: Don’t let negativity in your bubble. Move on from it. It only brings you down. And remember you can’t control other people, just yourself. If ALS has given me anything it has given me the ability to move on and let drama and negativity roll off my back. I don’t stew in it anymore. I decide what I can control and fix that. I take what I can’t control and I cut it off. I do this by writing about it and talking it out with my people. Then I am done with it. It takes practice and you have to want to make peace. Then it will come. It is a mindset.

~ He has a plan and I have a purpose ~