UNITY ONE / TFOC: Fundraiser for Isys Alexis
Donation protected
My friend Isys Alexis has been living with her illness that is rapidly effecting all aspects of her life in a profound and negative way . And for her to continue to have a quality of life that she deserves she is in need of funds to help her live day to day as the medication that she requires has to be administered on a daily basis.
Isys would like to share with you her story and diagnosis so that there will be a greater understanding with regards to her illness. She is doing so to also raise awareness for those that are also suffering from the same illness. Please take the time to read below. Thank you all for your support.
Thank you for taking the time to read this, I hope it better helps you understand what I am going through, first a little background info on autoimmune disease. Your body's immune system protects you from disease and infection. But if you have an autoimmune disease, your immune system attacks healthy cells in your body by mistake. Autoimmune diseases can affect many parts of the body. No one is sure what causes autoimmune diseases. The hardest thing to understand is that its 2018 and we still don’t have all the answers. My health was never perfect; I was diagnosed with an autoimmune disease when I was nine. Being a T1D (aka Type on Juvenile Diabetic) meant I always carried the risk of devastating complications in the future. It also meant I had a disease that shared a name with another disease known as Type 2 diabetes, so being faced with comments like “You don’t look diabetic” Or “Diabetes? But you’re so young” Became a part of my life. I can explain. Type 2 Diabetes is a metabolic disorder, not an autoimmune. It can be prevented by eating healthy and exercising and is usually diagnosed to obese patients. So essentially people with T2D tend to be overweight, older and not too focused on their health. T2D can also be managed by eating healthy and exercising and can also go away completely! Some folk who choose not to exercise or eat healthy take Insulin or pills to control their diabetes. Please understand that insulin is NOT covered by OHIP (Gov’t health insurance) and I fear it is for this reason. (It’s not necessarily mandatory for T2D) The issue: T1D do not have this luxury of reversing their illness with diet and exercise and without insulin injections (pills don’t work on us) we must inject needles into our body and balance your sugar levels or we eventually die, slowly may I add. I don’t usually feel very comfortable with this part, and it gets me quite emotional but here I go, complications of T1D include but are not limited to heart stroke, ulcers, blindness, and amputations of toes, fingers, feet, legs etc..... On top of that some people with one autoimmune illness tend to be more prone to others. I am one of those people. Through my life I have suffered 4 Iritis outbreaks (Inflammation of the eye-muscle for no reason) it feels like someone is putting a hot knife in your eye. I also had my skin break out in a crocodile-skin looking rash for about two months. It was between my thighs, on my arms, stomach, and lower back and on my buttocks. I didn’t share this with many people because I didn’t want them thinking I was dirty or had bacteria; mind you this is completely unrelated to personal hygiene and is just another autoimmune. I also have seasonal allergies and other things but honestly I can’t complain about that. I knew this but much like the most of us I never really thought I’d reach the point in my life were the complications would dramatically change my quality of life....I tried my best to keep my T1D under control but sometimes we just get unlucky and it hits us harder than others. Where I am at now: Since April of this year I began feeling nauseous, it start off as me brushing it off as car related motion sickness, but it quickly became apparent to my husband and I that it was something more serious, and permanent. The nausea never seemed to go away, perhaps for only a few brief moments but it always returned. I had no other related symptoms to digestive issues. So this was all a bit strange. It didn’t show signs of stopping and was progressively getting worse and harder to handle. Eating regularly is important for T1 diabetics because if our blood sugar levels drop too low we need sugar to get it back to safe range or we can suffer seizures, coma and death. Now I had difficulty keeping juice in my system, you can imagine how scary it’s been for my husband and I. Multiple doctor visits told us that I was suffering from “Gastro paresis”, perhaps due to my diabetes....but Gastro paresis, is a general term meaning digestive paralysis. Each case is unique so this is what I am dealing with: My body has nerve damage in my small intestine so food isn’t getting pushed through fast enough so that equals me suffering with: Acute to severe nausea all day every single day. Like a hangover that wont leave. Ever. Last month I ended up in the hospital because I couldn’t keep any liquids down for 4 days. They kept me there just short of a week rehydrating me and running rests on my heart, which is under distress due to its constant physical suffering. Like that feeling you get right when you are about to vomit, your heart races and you start to contract. Some days that happens every few minutes for hours. But there has to be a cure right? No, but drugs can be taken to help move food along, the issue is the drug has these side effects when taken long term and I was told to stop immediately since I am at “high risk” for the following symptoms: twitching movements of face and tongue/ random chewing movements mask-like face uncontrolled movements of the hands and fingers twisting movements of the body shuffling walk loss of bladder control muscle spasms of the face, neck, and back ...also nausea? it goes on. So what can I do to help this? Since I can’t take the medication and there is no cure? What does my future hold for me or my quality of life? I had an idea, the use of IV dips have become more popular in today’s age. I can use this to my advantage; the IV can provide a direct source of hydration for the days/weeks/months I cannot keep water in my system. The vitamins in the IV drip can help me replenish the electrolytes I lose from vomiting and any other essential nutrients I am not getting. The reality of this is upsetting for me to talk about but I need help. I don’t want to have a feeding tube installed and I don’t want to live with the side effects of my medication. For those who know, I am an actress and musician and having a feeding tube would limit my ability to perform, with muscle spasms it will make my future as an actress obsolete. Donations would go towards my IV treatments which are not covered by any health plan. This means I could sustain myself without the need of a feeding tube and could continue my dreams as a model, actress and musician. I also would one day like to be a voice of those suffering from similar invisible/autoimmune illnesses.
Isys would like to share with you her story and diagnosis so that there will be a greater understanding with regards to her illness. She is doing so to also raise awareness for those that are also suffering from the same illness. Please take the time to read below. Thank you all for your support.
Thank you for taking the time to read this, I hope it better helps you understand what I am going through, first a little background info on autoimmune disease. Your body's immune system protects you from disease and infection. But if you have an autoimmune disease, your immune system attacks healthy cells in your body by mistake. Autoimmune diseases can affect many parts of the body. No one is sure what causes autoimmune diseases. The hardest thing to understand is that its 2018 and we still don’t have all the answers. My health was never perfect; I was diagnosed with an autoimmune disease when I was nine. Being a T1D (aka Type on Juvenile Diabetic) meant I always carried the risk of devastating complications in the future. It also meant I had a disease that shared a name with another disease known as Type 2 diabetes, so being faced with comments like “You don’t look diabetic” Or “Diabetes? But you’re so young” Became a part of my life. I can explain. Type 2 Diabetes is a metabolic disorder, not an autoimmune. It can be prevented by eating healthy and exercising and is usually diagnosed to obese patients. So essentially people with T2D tend to be overweight, older and not too focused on their health. T2D can also be managed by eating healthy and exercising and can also go away completely! Some folk who choose not to exercise or eat healthy take Insulin or pills to control their diabetes. Please understand that insulin is NOT covered by OHIP (Gov’t health insurance) and I fear it is for this reason. (It’s not necessarily mandatory for T2D) The issue: T1D do not have this luxury of reversing their illness with diet and exercise and without insulin injections (pills don’t work on us) we must inject needles into our body and balance your sugar levels or we eventually die, slowly may I add. I don’t usually feel very comfortable with this part, and it gets me quite emotional but here I go, complications of T1D include but are not limited to heart stroke, ulcers, blindness, and amputations of toes, fingers, feet, legs etc..... On top of that some people with one autoimmune illness tend to be more prone to others. I am one of those people. Through my life I have suffered 4 Iritis outbreaks (Inflammation of the eye-muscle for no reason) it feels like someone is putting a hot knife in your eye. I also had my skin break out in a crocodile-skin looking rash for about two months. It was between my thighs, on my arms, stomach, and lower back and on my buttocks. I didn’t share this with many people because I didn’t want them thinking I was dirty or had bacteria; mind you this is completely unrelated to personal hygiene and is just another autoimmune. I also have seasonal allergies and other things but honestly I can’t complain about that. I knew this but much like the most of us I never really thought I’d reach the point in my life were the complications would dramatically change my quality of life....I tried my best to keep my T1D under control but sometimes we just get unlucky and it hits us harder than others. Where I am at now: Since April of this year I began feeling nauseous, it start off as me brushing it off as car related motion sickness, but it quickly became apparent to my husband and I that it was something more serious, and permanent. The nausea never seemed to go away, perhaps for only a few brief moments but it always returned. I had no other related symptoms to digestive issues. So this was all a bit strange. It didn’t show signs of stopping and was progressively getting worse and harder to handle. Eating regularly is important for T1 diabetics because if our blood sugar levels drop too low we need sugar to get it back to safe range or we can suffer seizures, coma and death. Now I had difficulty keeping juice in my system, you can imagine how scary it’s been for my husband and I. Multiple doctor visits told us that I was suffering from “Gastro paresis”, perhaps due to my diabetes....but Gastro paresis, is a general term meaning digestive paralysis. Each case is unique so this is what I am dealing with: My body has nerve damage in my small intestine so food isn’t getting pushed through fast enough so that equals me suffering with: Acute to severe nausea all day every single day. Like a hangover that wont leave. Ever. Last month I ended up in the hospital because I couldn’t keep any liquids down for 4 days. They kept me there just short of a week rehydrating me and running rests on my heart, which is under distress due to its constant physical suffering. Like that feeling you get right when you are about to vomit, your heart races and you start to contract. Some days that happens every few minutes for hours. But there has to be a cure right? No, but drugs can be taken to help move food along, the issue is the drug has these side effects when taken long term and I was told to stop immediately since I am at “high risk” for the following symptoms: twitching movements of face and tongue/ random chewing movements mask-like face uncontrolled movements of the hands and fingers twisting movements of the body shuffling walk loss of bladder control muscle spasms of the face, neck, and back ...also nausea? it goes on. So what can I do to help this? Since I can’t take the medication and there is no cure? What does my future hold for me or my quality of life? I had an idea, the use of IV dips have become more popular in today’s age. I can use this to my advantage; the IV can provide a direct source of hydration for the days/weeks/months I cannot keep water in my system. The vitamins in the IV drip can help me replenish the electrolytes I lose from vomiting and any other essential nutrients I am not getting. The reality of this is upsetting for me to talk about but I need help. I don’t want to have a feeding tube installed and I don’t want to live with the side effects of my medication. For those who know, I am an actress and musician and having a feeding tube would limit my ability to perform, with muscle spasms it will make my future as an actress obsolete. Donations would go towards my IV treatments which are not covered by any health plan. This means I could sustain myself without the need of a feeding tube and could continue my dreams as a model, actress and musician. I also would one day like to be a voice of those suffering from similar invisible/autoimmune illnesses.
Organizer
Nalini Singh
Organizer
Hamilton, ON
