I'm not done yet

May is and it's no secret that ALS is not widely known, and for those who do know about it, it's thought of as an 'older white man's disease'. The truth is that anyone can be affected by ALS. Many people you know, like the women of Her ALS Story, may have already been affected by ALS, and someone you know could be diagnosed.

"Never in our wildest dreams (or nightmares?) did we imagine being "someone you know" with ALS. For all of us, this disease came out of nowhere just as we were hitting the prime of our lives. It has forced us to adapt constantly and we are sick of it. We believe in a future where ALS will no longer be fatal. This is why we ❤️ Project ALS and their unwavering dedication to promising research!" -Her ALS Story

Today's installment of living with ALS is brought to you by the letter C. I have spent the better part of an hour coughing trying to get this excess mucus out, only to choke several times in the process and ultimately end up with a bloody nose. Why don't I use the cough assist machine you might ask? Because it doesn't actually make me cough. It's just to help strengthen my lungs so I can cough harder.

This is another reason I ask you to stay away from me if you are sick or possibly could be sick. I no longer have a good immune system to help me fight off any kind of cold.

Since being diagnosed I have noticed that if something is funny, it's REALLY funny to me now. I don't remember ever laughing so hard. Last night I was laying in bed watching tik tok. My back was to Matt. I was watching videos and laughing so hard that nothing was coming out. And because I was doing that, the bed was shaking. Matt didn't know if I was laughing or crying. I finally rolled over and I was laughing so hard I was crying. This happens to me a lot. The first time I noticed it was when Taylor Darling made Paisley a cat box for her valentines day cards. She FaceTime me after midnight and all I could do was laugh. Paisley loved it so that's all that matters.

Here's a picture of said cat box.

Here are just a couple facts about ALS. They are seeing a high increase in people being diagnosed in Michigan.

Well it's that time again. Nothing to exciting going on my way. Finally got ahold of someone at SS. I called Monday and Tuesday and finally got someone that knew what they were talking about. Come to find out my case was approved in December but someone never finished the job. That's okay, it's complete now.
Woke up yesterday and couldn't get myself to the standing position no matter how hard I tried. Matt and I had a dr appointment. That was a lot of fun(not really). My car sits to high for me to be able to get in and out of it. So now I need to look for a van so I can just drive my wheelchair right up into it. So it looks like I'll be selling my baby to get a van. As always I'm home almost everyday if anyone wants to come hang out.
Ironically I did make a new friend. His name is Aaron and I met him on tik tok. He is originally from Michigan, now lives in Orlando. He was also diagnosed with ALS last year. He is the one that helped me to push for my disability. We've been talking and comparing stories. More people are being diagnosed every day. You never know who is going to affect.

On this week's adventures of living with ALS: Monday I got my heart monitor. Today was the last day I had to wear it. It's on its way back. They finally called to schedule my echocardiogram, that's happening the end of May. Today my new cough assist machine was delivered. Everyone in the house knows how to work it, as well as my daughter Madison and my granddaughter Addison.
Addison had fun listening to everyone's heart beats with the stethoscope, including the animals. She also got a new play structure this week. It was a surprise for her. I asked her if I could play on it with her and she told me I had to her fixed first. I'll take it, at least it wasn't a no. She's such a great helper.

Got this fancy schmancy heart monitor today. I have to wear it for 3 days. Hopefully that's long enough for them to find out what's going on

Six months. It's been six months since I heard the dr say "You have ALS". Six months since not only my life, but also the lives of my loved ones was changed forever. Six months I have been taking Riluzole to slow down the progression. Four months since I have been taking Radicava ORS, also to slow down the progression.
The day I was diagnosed I could still:
•Walk
•Drive
•Get in and out of my car unassisted
•Dress myself
•Shower
•Get myself in and out of bed, as well as roll over.
•To and from the bath room as well as on and off the toilet
•Get up and down from the furniture
•Cook
Today I can do all of those things with assistance. The hardest part for me has been having to depend on someone for everything..
I used to just get in my car and go when I wanted to. Now I can not even get in my own car.
Some days I require help to even put my hair in a ponytail. Everyday is different and everyday posses new challenges. But everyday I keep going. Trust me, I've cried probably everyday. Sometimes it's all I can do. Unless you have lived through this, you have no idea. I know it's hard for people to watch my struggle, trust me when I tell you it's hard for me to let you see my struggle. But here I am, Six months into my life sentence. I refuse to be a statisticic. I WILL live longer than the 2 to 5 years that they tell you. I will do everything in my power.
On Thursday I will have my new cough assist machine delivered and learn how to use it. I have developed a small cough. It seems like it comes on when my throat gets dry. However I can not cough hard enough to clear my throat, hence why I need this machine. I've watched some videos so I know what to expect. It just gives me anxiety.
As always, thank you for reading and sharing in my crazy journey.

Edited: I forgot to add, I can no longer walk. I can stand long enough to transfer, and I have lost most of the use of my left hand. And anyone that has talked to me on the phone may have noticed my speech is getting a little slurred, or so I think anyways. Any over noticed that I have to stop and take a breath during talking.

Well, to say I'm already over having ALS would be an understatement. This week has given me a fall in the bathroom and a trip to urgent care. Not only do I have no strength in my left leg, my right leg and core are also getting weaker.
I was in the bathroom, standing up and holding on to the towel bar(save the lectures, I already know it's not strong enough to hold me). As a rule I'm only using it to steady myself. Matt was in the bathroom with me, but by the time he grabbed me it was too late. He is the reason I didn't get hurt as bad. I couldn't get my left leg under me enough to steady me until he could help me onto the toilet. Down I went, he did help break my fall. Anyways.
I went back to the bedroom and after about 2 hours or so I had to use the bathroom again. Well, when I stood up I couldn't put ANY weight on my foot. At this point it's like 10pm and I'm going to urgent care. I couldn't put any weight on my foot which posed an issue for me to transition from wheelchair to car and car to wheelchair. Not to mention I can't get in my car very easily. So I called one of my best friends and someone I can always count on and with out hesitation her and her husband jumped in the car and where on the way. I just want to add that these two people have NEVER hesitated to help me, to hang out, to help Matt out with anything and vice versa. We have only been friends a couple of years. So that goes to show that it's not always the people you have known the longest.
Anyways, went to urgent care, got xrays of my foot. Nothing is broken. He said it could be a hair line fracture or a break that won't show up for 7 to 10 days. So they just wrapped it and sent me on my way.
The ONLY time I am left home alone is if Matt has to run to the store. My cousin is here, the only thing he can do is get me something if I need it and keep me company. He can not lift me. That is where Taylor Darling comes into the picture. So yesterday her and Lincoln "babysit"me. He sure is busy, but he kept me company, ate lunch with me and spent most of his time saying papa Matt. Next week I go to the cardiologist for me fast heart rate, hopefully they figure it out.
To say my life is boring compared to what it used to be in an understatement.
Anyone that wants to come visit is more than welcome. I'm usually almost always home. 🥰Here are some pictures of Lincoln from yesterday. Yes, that's ham on his face. He's a little ham.

So because I can no longer walk, I can not get my legs on the bed and getting on and off the toilet requires assistance, I can no longer stay home by myself for long periods. So I require a "babysitter". So a couple days this month I need someone for a couple hours. Taylor Darling is going to hang out. This is how our conversations go. I wouldn't have them any other way. 💙💚

So apparently I get cool skin along with my ALS.i had the chills, looked at my arm and this is how my goose bumps looked 🤷‍♀️

Well, we had a little more excitement this week. I've noticed for years that my heart rate runs on the high side, my resting heart rate is anywhere between 80-109ish. I've been keeping a closer eye on it recently. So a couple days last week it was as low as 40 and as high as 120. So I'm looking through my health app on my phone and checking what my range has been. There were two days that it was as high as 162 and 182. I was actually sitting doing nothing. I didn't have any chest pain, no headache, no blurred vision, no vomiting. I didn't feel any different. So I emailed my ALS Dr and filled her in (this was on Saturday) so Monday she emailed me back and said I need to go to the ER.i finally went and they did an EKG, ran some blood tests. Everything was normal. So now I have to follow up with a cardiologist and get a heart monitor that I'll have to wear for 4 to 6 weeks. Fun times

So I recieved this message from one of my nurses at my ALS clinic. I have said from the beginning that I really love this team of Drs and nurses. The communication is amazing! This is the nasty medicine that I had to drink. I honestly only drank it for 2 days, that's how terrible it is. Anyone that wants to taste it, I have a ton of it lol. Anyways, I no longer have to worry about it!

What is everyone doing for Easter? We are doing a big family gathering. We will be having a non traditional Easter. Going to be doing a taco/ nacho party. With about 25 people, it was a good choice.

Sorry I have not posted here in a week or so. Not to much going on, nothing really new to report. Just been hanging out, doing a lot of nothing. I did sit at my sewing machine last week and started 3 bags. Just need to finish them. What's everyone been up to?

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I'm not done yet Medical & health

If you want to follow me on or journey but have not liked my page yet, please share, like and follow. I realize not everyone knows about this disease so together we can learn about it, ask questions and hopefully one day find a cure!

I'm not done yet Medical & health

Day 2s approach to drinking Rilyvrio: spray listerine in mouth, wait a minute until it's good abs numb, slam the 8oz and then brush my teeth very well. Still nasty as ever, but got the after taste out faster. On a side note, it's 71 outside today and beautiful 😍 even Stella is enjoying it outside

Day 1 of Relyvrio, this is the one I have to mix the packet with 8 ounces of water. Well, they didn't exaggerated when they said it tasted bad. It's absolutely horrible. They send you a cup that has an 8 Oz fill line on it and a straw. So I mixed it up and gave it a taste. 🤢 it's horrible. I tried another sip. 🤢 They sent me listerin spray and strips. I decided to spray my mouth and then slam it. That will be the way I take it from now on. The first 3 weeks I have to drink one packet in the morning. After that I drink one in the morning and one at night. It is absolutely horrible. Tastes bad is an understatement! Hope everyone is out enjoying this beautiful weather!

Sunday is my last day for my Radicava ORS(for round one). I think the only side effect I had(and I'm not 100% sure it was from the meds) is diarrhea. And to me, that's the worst. I'd rather be nauseous or have the occasional headache. But, I do feel like I can tell a difference! I am noticing that in not having as many Fasciculations. However, I am having more and more swelling in my feet, especially the left one. Makes sense because that's the one that I have all the issues with. Hope everyone is having a great weekend and enjoying this nice weather. 🥰

Almost done with wk two of Radicava ORS. Still going good. No side effects. It's been really nice out the last couple of days. We went to Walmart yesterday. Getting in and out of the car is becoming a bit much. It takes me to long to get my energy back. I've only been going out when I really need to. (Maybe once a week, otherwise I start to go stir crazy). I also went and seen my friend Melissa yesterday. I don't get out of the car right now. Sitting in the car to long has also proven to be hard. I get to stiff and my left leg likes to swell up. Thank you Robb, aunt Linda and uncle Rich for coming to visit me today. And thank you for the cute Easter basket. It really helped to brighten my day.

Oh yeah, if I go missing, check the nursing homes. Taylor told me I was exhibiting nursing home behavior yesterday. She promised she wouldn't put me in one. In return I told her that we can do a full weekend at Bernies photo shoot lol

I came on fb like 3 times earlier to leave a message and didn't do it any of those times. So, one wk down on the Radicava ORS, so far so good!

Day 2 of Radiva ORS. Still no side effects that I have noticed. Feeling pretty good. It is getting harder to lift my left foot off the ground. Sometimes I can walk like nothings going on and other times I have to really concentrate to pick up that foot. I'm getting tired a lot easier. But I'm still fighting!

I started my Radicava today. It didn't taste too bad thankfully. It was a good day, no immediate side effects. Didn't do much other than watch TV. Had a nice long conversation with my sister Christina. Other than that nothing new to report.

Not to much new going on. I recieved the other two medications finally. Both of which I have to drink 🤢 I will start them on Monday. I'm going to start them one at a time so I know which one the side effects are from, if any. I'm told that the relyvrio tastes horrible. I can mix it with juice, but not orange juice apparently. I guess it's very nasty that way. The after taste is so bad that they actually send you listens breath strips to use immediately after. 🙄

Edit: this stuff is so expensive it comes from a specialty pharmacy next day air in a cooler and someone has to sign for it.

I think my biggest struggle is letting other people help me. I'm so used to being independent and doing what I want when I want. I'm not used to someone else being in control of my life and the decisions I make.

Went to visit Mikey at the hospital and then shopping at Sam's. All I did was get in and out of the car a couple times and man, I'm pooped. I can not walk long enough to get anywhere so wheel chair or electric scooter it is. I'm just glad I got out of the house.