Clinical trials...Feeding and Breathing tubes..Oh My
So it's been a while and I thought I'd update everyone. I started this blog to help myself and others who might be struggling with ALS or depression or life. Also maybe if you know someone struggling or are caring for someone. It also serves as a way to update friends and family in one shot. It's easier than telling every single person. It keeps us connected and close. It saves you time because it takes forever for me to get something out. Lastly I can let it all out here and not consume me.
What I don't ever want is for this disease to consume my life or me again. It's part of the reason I like this. I don't like talking about it alot outside of here because I don't want the attention or pity or my sole focus to be this. There is so much more to focus on or worry about. Like friends and family and trips and making memories and love and really living. So forgive my foul mouthed vulgar humor and drunk posts because bitch I ain't dead yet. I'm still me and even when I can't move or talk I'll still be me in there (Which fucking blows and is scary) so treat me like it. Yes I'm dying but so is everyone...I've just got a head start to the big bar in the sky! Suckers. Yes my strength sucks and body is slowly shutting down but I can still do everything with a little assistance. Actually not lifting heavy barbells up over my head...I'd probably die. Man I miss working out. Yes there's no cure and the doctors don't really know how long I have because everyone is different but....um...there's a positive to this.....oh does anyone really know how much time they have? Nailed it! Ayyyye!
So about a year after being diagnosed I started a trial drug to help slow the progression of losing my breathing. It was in the phase 3 which is probably the safest and I wasn't a total Guinea pig. *Totally would of been down to be one because what have I got to lose now and I like drugs. Just kidding mom no I don't 😉 totally on my bucket list...maybe. You'll never know. Who am I kidding there will probably be video.
Anyways the average als patient drops 5%(I think) in their breathing numbers every 3 to 4 months and I was above average. My numbers dropped significantly slower than most which they attributed to the study drug. Yippee! *while in the trial no one knew if I was getting the actual drug or placebo but because of my numbers we all thought it had to be actual drug.
So every few weeks I went in got poked prodded and more drugs. After a while I was given actual drug but had to do a low dose because I had side effects on the high one. Still poked and prodded every so often and given more drug. Fast forward to the end of August and I get a text that I need to come in because the drug lost funding and I won't be receiving it anymore. I know what you're thinking...dead girl walking...panic! Haha Well apparently because of how low my dose is it essentially was working just like a placebo and the numbers were not as good as they hoped in the trial so it didn't seem ethical to keep having me or anyone take it. What it means for people on the higher dose I don't know. One less pill to swallow I guess.
So I was told that whatever I've been doing since being diagnosed is working for me and that my very active social life and amazing support system has been my saving grace. I am so thankful for all of you. The visits and outings and trips and talks...laughs and outpouring of love is literally prolonging my life. I've always loved my friends and family something fierce but this is a whole new level of love and appreciation.
As for new trials I don't qualify right now but hopefully something will come around soon.
Now my least favorite topic...getting a feeding tube put into my stomach that has a part outside of my body. At some point...they don't know when...I'll need it. I don't need it now but because my breathing numbers are declining they have to do it NOW because any lower breathing numbers would make it unsafe to put me under. I probably wouldn't make it out. If I don't get it...I'll have to manage without it. Which means I either won't be able to get enough food and water to live very long. I'll choke and die or aspirate food or liquid and get sick and die. The possibilities are endless Haha. Well I declined getting one. I know I'm crazy and it's something that will help later. Hear me out for a second though. Have you ever seen a movie or maybe in real life someone hooked up to a ton of machines and thought if that's ever me just pull the plug...cuz I have. Now I want you to think about where you are in life right now and think about would you want to stick around living on tubes and machines. Some of you may have children who you want to stick around for and I get that. I don't and as much as I love my friends and family I know that talking and breathing through machines won't be enough for me. I'm in no way putting down those who choose that life. I think it's badass and brave and such examples of strength for overcoming and showing people death isn't the only option. Everyone is different and for me it's not what I want.
I want you to put yourself in my shoes. Body shutting down. Barely any strength in your hands and arms and they feel so heavy that they drag you down a little. Your balance and walking is wobbly. Breathing and talking is a little harder. You've made all kinds of adjustments and need help doing almost everything. But the one place that you don't feel that sick is in bed. It's easier to move around and you don't feel the weight of it all. Also you're a stomach sleeper and have been all your life. Now they want you to put something in your body that will help you at some point but until then will be another reminder that you're sick. Another thing to worry about and take care of. And is gonna take another piece of you and ruin sleeping on your stomach and rolling like you like. Swimming with it will be another adventure also. So is it worth it to you to sacrifice another part of you and some quality of life. Not for me. Some of you may think it's weak and it's me giving up. I see it as strength and fighting in a big way. It's a big middle finger to ALS and saying you don't scare me...bring it bitch. I'm gonna fight you with everything I have and when it isn't enough you can have my shell of a body but not my spirit. Mainly because I'll be ruling the underworld haha just kidding I'm so going to heaven. Actually wherever the drinks are better.
So I leave you with all of that to digest. Till next time...Tequila Jessy pooh out.
What I don't ever want is for this disease to consume my life or me again. It's part of the reason I like this. I don't like talking about it alot outside of here because I don't want the attention or pity or my sole focus to be this. There is so much more to focus on or worry about. Like friends and family and trips and making memories and love and really living. So forgive my foul mouthed vulgar humor and drunk posts because bitch I ain't dead yet. I'm still me and even when I can't move or talk I'll still be me in there (Which fucking blows and is scary) so treat me like it. Yes I'm dying but so is everyone...I've just got a head start to the big bar in the sky! Suckers. Yes my strength sucks and body is slowly shutting down but I can still do everything with a little assistance. Actually not lifting heavy barbells up over my head...I'd probably die. Man I miss working out. Yes there's no cure and the doctors don't really know how long I have because everyone is different but....um...there's a positive to this.....oh does anyone really know how much time they have? Nailed it! Ayyyye!
So about a year after being diagnosed I started a trial drug to help slow the progression of losing my breathing. It was in the phase 3 which is probably the safest and I wasn't a total Guinea pig. *Totally would of been down to be one because what have I got to lose now and I like drugs. Just kidding mom no I don't 😉 totally on my bucket list...maybe. You'll never know. Who am I kidding there will probably be video.
Anyways the average als patient drops 5%(I think) in their breathing numbers every 3 to 4 months and I was above average. My numbers dropped significantly slower than most which they attributed to the study drug. Yippee! *while in the trial no one knew if I was getting the actual drug or placebo but because of my numbers we all thought it had to be actual drug.
So every few weeks I went in got poked prodded and more drugs. After a while I was given actual drug but had to do a low dose because I had side effects on the high one. Still poked and prodded every so often and given more drug. Fast forward to the end of August and I get a text that I need to come in because the drug lost funding and I won't be receiving it anymore. I know what you're thinking...dead girl walking...panic! Haha Well apparently because of how low my dose is it essentially was working just like a placebo and the numbers were not as good as they hoped in the trial so it didn't seem ethical to keep having me or anyone take it. What it means for people on the higher dose I don't know. One less pill to swallow I guess.
So I was told that whatever I've been doing since being diagnosed is working for me and that my very active social life and amazing support system has been my saving grace. I am so thankful for all of you. The visits and outings and trips and talks...laughs and outpouring of love is literally prolonging my life. I've always loved my friends and family something fierce but this is a whole new level of love and appreciation.
As for new trials I don't qualify right now but hopefully something will come around soon.
Now my least favorite topic...getting a feeding tube put into my stomach that has a part outside of my body. At some point...they don't know when...I'll need it. I don't need it now but because my breathing numbers are declining they have to do it NOW because any lower breathing numbers would make it unsafe to put me under. I probably wouldn't make it out. If I don't get it...I'll have to manage without it. Which means I either won't be able to get enough food and water to live very long. I'll choke and die or aspirate food or liquid and get sick and die. The possibilities are endless Haha. Well I declined getting one. I know I'm crazy and it's something that will help later. Hear me out for a second though. Have you ever seen a movie or maybe in real life someone hooked up to a ton of machines and thought if that's ever me just pull the plug...cuz I have. Now I want you to think about where you are in life right now and think about would you want to stick around living on tubes and machines. Some of you may have children who you want to stick around for and I get that. I don't and as much as I love my friends and family I know that talking and breathing through machines won't be enough for me. I'm in no way putting down those who choose that life. I think it's badass and brave and such examples of strength for overcoming and showing people death isn't the only option. Everyone is different and for me it's not what I want.
I want you to put yourself in my shoes. Body shutting down. Barely any strength in your hands and arms and they feel so heavy that they drag you down a little. Your balance and walking is wobbly. Breathing and talking is a little harder. You've made all kinds of adjustments and need help doing almost everything. But the one place that you don't feel that sick is in bed. It's easier to move around and you don't feel the weight of it all. Also you're a stomach sleeper and have been all your life. Now they want you to put something in your body that will help you at some point but until then will be another reminder that you're sick. Another thing to worry about and take care of. And is gonna take another piece of you and ruin sleeping on your stomach and rolling like you like. Swimming with it will be another adventure also. So is it worth it to you to sacrifice another part of you and some quality of life. Not for me. Some of you may think it's weak and it's me giving up. I see it as strength and fighting in a big way. It's a big middle finger to ALS and saying you don't scare me...bring it bitch. I'm gonna fight you with everything I have and when it isn't enough you can have my shell of a body but not my spirit. Mainly because I'll be ruling the underworld haha just kidding I'm so going to heaven. Actually wherever the drinks are better.
So I leave you with all of that to digest. Till next time...Tequila Jessy pooh out.
