Haley’s Medical Journey
Donation protected
Hi everyone. As you know, I’ve had a long journey while navigating my health. I was blessed with several years of remission, which allowed me to work, get a car, and make some amazing friends and memories. I got into rock climbing, going to the club, working with kiddos and started planning a career for zoology. Just being 23
Unfortunately, I’ve become very sick over the last several months. I have severe systemic burning pain under all of my skin. My arms, face, legs, core…everywhere. Muscle spasms turn into knots and limit mobility, or twitch so much I can’t do tasks normally. I also have intermittent vision loss, and my bladder still only works part time. I have to medicate a lot to manage the pain, which unfortunately has made me quite spacey and unable to drive at times. Preliminary genetic testing is showing I likely have several genetic neuromuscular diseases, including two types of Charcot Marie Tooth disease and Hereditary Sensory and Autonomic Neuropathy. The possibility of Juvenile ALS is also coming to the forefront and would be an awful diagnosis to have. I am currently undergoing more tests to determine proper diagnosis as I have very rare gene variants.
I’ve unfortunately lost the ability to a lot of the things I’ve so thoroughly enjoyed. Venues are too hot and hurt so I spend my time outside with my favorite bouncers or laying down in the car, rock climbing doesn’t go all that well, long walks (like a museum or street fair) need a walker, even pool hasn’t been great because of my vision. I have amazing people who are helping me make the most of it but it still has been hard
All of my jobs are generally labor intensive, or I need a clear head, so it’s cut down my ability to work significantly. I’m doing my best to work when I can but it’s not enough, and I often have to tap out because I’m in so much pain.
I’m getting behind in bills, as I picked up things like a car payment and other recurring bills while I was in remission. I’ve also had to a lot of traveling for appointments, as well as back and forth to the bay to hide from the heat, as living at home isn’t sustainable when it’s hot. I’m being as cautious as I can-minimal spending, shopping for necessities at discount stores, putting off work on my car…but I’m drowning right now.
A lot of you have asked how you can help, and this is the biggest stressor I have right now. It’s going to be several months until I have a solid diagnosis and possible treatment, and getting ahead would take so much off my plate. All the check ins and visits and love and support mean the world as well, and I appreciate the team of people I have so so much.
Please share on your social medias if you can
Thank you everyone
Haley Miller
Unfortunately, I’ve become very sick over the last several months. I have severe systemic burning pain under all of my skin. My arms, face, legs, core…everywhere. Muscle spasms turn into knots and limit mobility, or twitch so much I can’t do tasks normally. I also have intermittent vision loss, and my bladder still only works part time. I have to medicate a lot to manage the pain, which unfortunately has made me quite spacey and unable to drive at times. Preliminary genetic testing is showing I likely have several genetic neuromuscular diseases, including two types of Charcot Marie Tooth disease and Hereditary Sensory and Autonomic Neuropathy. The possibility of Juvenile ALS is also coming to the forefront and would be an awful diagnosis to have. I am currently undergoing more tests to determine proper diagnosis as I have very rare gene variants.
I’ve unfortunately lost the ability to a lot of the things I’ve so thoroughly enjoyed. Venues are too hot and hurt so I spend my time outside with my favorite bouncers or laying down in the car, rock climbing doesn’t go all that well, long walks (like a museum or street fair) need a walker, even pool hasn’t been great because of my vision. I have amazing people who are helping me make the most of it but it still has been hard
All of my jobs are generally labor intensive, or I need a clear head, so it’s cut down my ability to work significantly. I’m doing my best to work when I can but it’s not enough, and I often have to tap out because I’m in so much pain.
I’m getting behind in bills, as I picked up things like a car payment and other recurring bills while I was in remission. I’ve also had to a lot of traveling for appointments, as well as back and forth to the bay to hide from the heat, as living at home isn’t sustainable when it’s hot. I’m being as cautious as I can-minimal spending, shopping for necessities at discount stores, putting off work on my car…but I’m drowning right now.
A lot of you have asked how you can help, and this is the biggest stressor I have right now. It’s going to be several months until I have a solid diagnosis and possible treatment, and getting ahead would take so much off my plate. All the check ins and visits and love and support mean the world as well, and I appreciate the team of people I have so so much.
Please share on your social medias if you can
Thank you everyone
Haley Miller
Organizer
Haley Miller
Organizer
Lathrop, CA