Kate's Lyme and AutoImmune Recovery
Donation protected
This week I turn 33. Never in my life did I imagine this is how I'd be celebrating 33rd birthday.
Over the last 2 years my health has been a myriad of ups and downs. I've been diagnosed with multiple autoimmune disorders. I am currently battling Celiacs Disease, Hashimoto's Disease, Small Intestinal Bacterial Overgrowth, Leaky Gut Syndrome, Peripheral Neuropathy, Adrenal Fatigue and malnutrition. I've shrunk an inch & a half in the last two years, have serious vitamin deficiencies and my immune system is constantly attacking and shutting down specific parts of my body. After months of slowly getting worse rather than better, more testing uncovered I also have Late Stage Neurological Lyme Disease, Rocky Mountain Spotty Fever, and a few other co-infections that are often hand in hand with Lyme disease (babesia and mycoplasma).
People often ask, "How do you feel?" Well, honestly, extreme fatigue doesn't even come close to describing how physically exhausted I feel. It's hard to move and it feels like a monumental feat to get out of bed in the morning. I have constant and severe nerve pain in my arms, hands, brain, and feet. The nerve pain can cause uncontrollable muscle twitching in my body. I have very little muscle strength. Sometimes, I have limited control over movement in my hands. I forget things due to cognitive impairment - important things and common things like the name of objects, what I'm doing, etc. My joints hurt, all the time. My thyroid is being attacked by my immune system and not functioning, so my hormones are all over the place. Celiacs has damaged my digestive system so badly over the years, resulting in a list of foods I absolutely cannot tolerate that is a mile long, while foods I can eat - I could fit that list on a post it note. I have such a severe allergy to wheat that I cannot eat anything that I haven't personally cooked myself in my own kitchen. The food issue has been hard for many reasons, but I've slowly navigated that uncharted territory. And I'm constantly learning new things that my body reacts to, which means cutting out more options of what I can eat.
I work with a phenomenal team of doctors that specialize in chronic and digestive disorders as well as the ins and outs of tick borne illnesses (Lyme,Rocky Mountain Spotty Fever, mycoplasma and babesia). Unfortunately, treatments for late stage neurological Lyme aren't covered under insurance, or well understood. I travel quite a lot (6 hours round trip) to get to my doctors, which gets expensive.
It turns out I can't take the majority of medicines because I have a reaction to their ingredients, so I have to search for alternatives and pay for all of those out of pocket. I've been sourcing medicines without ingredients that make me sicker but they are hard to come by. Working with my doctors, we are slowly piecing together a treatment plan that won't trigger my celiacs or other food allergies. For Lyme, I've taken the standard round of antibiotics but that is only one piece to the puzzle. I've got a very long road ahead of me and it seems like it will be a lot of trial and error as treating Lyme is not a one size fits all approach.
It's incredibly edgy for me to ask for help while there are so many people out there in the world that need it more than I do. And still, I want to be healthy so I can play with my daughter, watch her grow up and actually enjoy my life. I want to not be in constant pain. I'd like to wake up in the morning and feel like I could do anything I want, because I'm healthy
again.
My hope is that by this time next year, I'll be celebrating my 34th and I'll have my health back, my life back. I've been told numerous times that getting Lyme disease to go into remission can take years. Years! While not being able to work is hard, stressful and not what I would have preferred, I'm looking at this as an opportunity to spend time just resting and getting better.
The financial strain on our family is huge right now as we adjust to not having my full time income. While we are making it work, my medical expenses are large and growing. The average cost of treating Chronic Lyme is around $20,000 (according to lymedisease.org) in out of pocket expenses.
What I'm asking for my birthday is help to speed up this process. I'm committed to spending this year resting and getting healthy but I can only afford so many treatments. It takes us a while to save money for medicine and given my food reactions, it costs more to have them specially made. My hope is that if I can spend the next year really giving treatment my all, it won't take me years to feel better.
So here I am...asking for help. While financial help for treatments would be wonderful, prayers and well wishes are needed as well.
I can't thank you enough for simply reading this far. I believe in the power of being witnessed, and supported by community as a strong pathway to healing. So thank you and blessings to each of you.
I've set my goal at $5000, and while I know that won't cover every medical expense, it's a start.
I'll leave this fundraiser up for the year and use any funds raised for treatments, medicine and other medical expenses.
Over the last 2 years my health has been a myriad of ups and downs. I've been diagnosed with multiple autoimmune disorders. I am currently battling Celiacs Disease, Hashimoto's Disease, Small Intestinal Bacterial Overgrowth, Leaky Gut Syndrome, Peripheral Neuropathy, Adrenal Fatigue and malnutrition. I've shrunk an inch & a half in the last two years, have serious vitamin deficiencies and my immune system is constantly attacking and shutting down specific parts of my body. After months of slowly getting worse rather than better, more testing uncovered I also have Late Stage Neurological Lyme Disease, Rocky Mountain Spotty Fever, and a few other co-infections that are often hand in hand with Lyme disease (babesia and mycoplasma).
People often ask, "How do you feel?" Well, honestly, extreme fatigue doesn't even come close to describing how physically exhausted I feel. It's hard to move and it feels like a monumental feat to get out of bed in the morning. I have constant and severe nerve pain in my arms, hands, brain, and feet. The nerve pain can cause uncontrollable muscle twitching in my body. I have very little muscle strength. Sometimes, I have limited control over movement in my hands. I forget things due to cognitive impairment - important things and common things like the name of objects, what I'm doing, etc. My joints hurt, all the time. My thyroid is being attacked by my immune system and not functioning, so my hormones are all over the place. Celiacs has damaged my digestive system so badly over the years, resulting in a list of foods I absolutely cannot tolerate that is a mile long, while foods I can eat - I could fit that list on a post it note. I have such a severe allergy to wheat that I cannot eat anything that I haven't personally cooked myself in my own kitchen. The food issue has been hard for many reasons, but I've slowly navigated that uncharted territory. And I'm constantly learning new things that my body reacts to, which means cutting out more options of what I can eat.
I work with a phenomenal team of doctors that specialize in chronic and digestive disorders as well as the ins and outs of tick borne illnesses (Lyme,Rocky Mountain Spotty Fever, mycoplasma and babesia). Unfortunately, treatments for late stage neurological Lyme aren't covered under insurance, or well understood. I travel quite a lot (6 hours round trip) to get to my doctors, which gets expensive.
It turns out I can't take the majority of medicines because I have a reaction to their ingredients, so I have to search for alternatives and pay for all of those out of pocket. I've been sourcing medicines without ingredients that make me sicker but they are hard to come by. Working with my doctors, we are slowly piecing together a treatment plan that won't trigger my celiacs or other food allergies. For Lyme, I've taken the standard round of antibiotics but that is only one piece to the puzzle. I've got a very long road ahead of me and it seems like it will be a lot of trial and error as treating Lyme is not a one size fits all approach.
It's incredibly edgy for me to ask for help while there are so many people out there in the world that need it more than I do. And still, I want to be healthy so I can play with my daughter, watch her grow up and actually enjoy my life. I want to not be in constant pain. I'd like to wake up in the morning and feel like I could do anything I want, because I'm healthy
again.
My hope is that by this time next year, I'll be celebrating my 34th and I'll have my health back, my life back. I've been told numerous times that getting Lyme disease to go into remission can take years. Years! While not being able to work is hard, stressful and not what I would have preferred, I'm looking at this as an opportunity to spend time just resting and getting better.
The financial strain on our family is huge right now as we adjust to not having my full time income. While we are making it work, my medical expenses are large and growing. The average cost of treating Chronic Lyme is around $20,000 (according to lymedisease.org) in out of pocket expenses.
What I'm asking for my birthday is help to speed up this process. I'm committed to spending this year resting and getting healthy but I can only afford so many treatments. It takes us a while to save money for medicine and given my food reactions, it costs more to have them specially made. My hope is that if I can spend the next year really giving treatment my all, it won't take me years to feel better.
So here I am...asking for help. While financial help for treatments would be wonderful, prayers and well wishes are needed as well.
I can't thank you enough for simply reading this far. I believe in the power of being witnessed, and supported by community as a strong pathway to healing. So thank you and blessings to each of you.
I've set my goal at $5000, and while I know that won't cover every medical expense, it's a start.
I'll leave this fundraiser up for the year and use any funds raised for treatments, medicine and other medical expenses.
Organizer
Kate Shanti
Organizer
