Emily's Medical Fund: Lyme Disease
Donation protected
Hello. My name is Emily Sukiennik, I'm 30 years old, a previous adventure athlete in the sport of slacklining/highlining, an outdoor tour guide, and I was diagnosed this year with Chronic Lyme Disease. Lyme Disease, originating in New England, is a bacterial infection contracted mostly by deer ticks and if not treated right away with antibiotics, can become chronic in nature. Many people that are exposed to the disease catch it right away as it produes flu like symtoms and sometimes, a distinct red rash at the site of the tick bite. Unfortunately, there are some cases that are different. I do not know when or where I contracted the disease as I never developed the rash. It's possible I contracted it when I was very young having been born 60 miles from Lyme, Connecticut where Lyme was first discovered; or, perhaps I contracted it later in life being as outdoorsy as I am. Either way, my symptoms started to show themselves in spring of 2012. I started to experience a variety of mystery symptoms including nausea, dizziness, frequent infections, muscle and joint pain, photosensitivity, anxiety and overall fatigue. Being someone who has been working my entire life, someone who is very strong willed and a hard worker I never thought that I would be someone asking for money in this way, let along someone struggling with chronic illness. But, here I am, an example that it can happen to anyone; I'm allowing myself to let go of my pride and ask for help.
I am asking for support in the healing process. At this point in my life, I will not be able to afford the treatments that will be most effective in beating this. Because Chronic Lyme Disease is not well researched and is very difficult to erradicate, I need to see specialists. Most specialists that are well versed in Lyme are Naturopathic Doctor's and as many of you may know, Naturopathic Doctor's provide alternative treatments that are not covered by insurance. I have quit my job in order to allow myself to heal properly, take care of my dog Belle who has cancer and pursue school full time. I found that not only did I need to leave for my dog and for school but the job was becoming too difficult or me physically and mentally. I was a tour guide for Pink Jeep Tours in Sedona and being out in the elements for 8-10 hours a day was proving to be too much for my body to handle. The sun exposure, breathing in dust and smoke from wildfires, talking and engaging for so many hours on end and bouncing around was completely exhausting and I just found myself deteriorating. This may be the first time since I was 15 years old that I have not worked. It feels a little strange as I have always put a lot of pressure on myself. But, I know deep down that it's the right thing to do. At this point I am taking a variety of supplements, monitoring my diet, undergoing Ozone Therapy, detoxing and resting as much as possible. It will be a tough battle but I know that I am strong enough to get through it with the support of my husband, my family and my friends. I thank you with my whole heart for considering helping me out in any way you can. In a perfect world, I would not have to ask, but I desperately want to heal and I am looking forward to life after Lyme. Below you will find a recent blog post I wrote about what I have been going through for the past 4 1/2 years. Hopefully it will not only educate people on Lyme Disease but also allow those struggling as well to know they are not alone.
Sincerely,
Emily
- Ozone Therapy: $175-550 per treatment (dependent on how aggressive the patient wants to go).
- Hyperbaric Oxygen Chamber: $150 per treatment
- Supplements: $15-70 per bottle
- Massage for Detoxing: $80 per treatment
There is stength in difficulty.
Fighting Chronic Disease - My Story
(www.theascentofem.blogspot.com)
It was 2012, early spring, and I had just returned to the desert town of Moab, Utah from a brief hiatus from the small town life. Moab is an incredible place if you love adventure but being only about 5,000 people or so it get's overwhelming at times, your typical small town drama. I had decided to take about a 6 month break and spent some time in the Denver/Boulder, Colorado area with some friends. Upon returning to the desert I started to notice that I was much more fatigued than usual but blew it off thinking I might just have a bug or something. Weeks and weeks went by and not only was I fatigued but I began to have severe cramping in my shoulder blades; I found myself constantly asking friends for shoulder rubs (and thank you for obliging, by the way). One episode was so extreme that I was actually brought to the ground and begged my friend to please just make the cramping stop. I prayed that he may actually have magical powers and could perhaps suck the pain right out of me; unfortunately he was not magical. It was so debilitating that I could hardly breathe. We had driven about an hour out of Moab and were preparing for a long hike to rig a highline but I was completely incapable of continuing. What's interesting is this was not my first experience with being brought to he ground by muscle cramps. I had had these cramps before, many years prior. My first "back spasm", as I have come to call them, was in 2008 in my college dorm room in North Carolina. At that time I was brought in an ambulance to the hospital because the spasm had lasted over 5 hours and I literally could not get off the floor of my room. That posed a problem for the EMT's as they didn't know how to get me out of the second floor dorm room. I ended up crawling slowly to the chair and they carried me down the stairs in a seated position. For those of you that have never had a back spasm, it is not minor. The muscles tense up so tightly that it actually pulls muscles from back, your sides and even your chest. It felt like the air was being squeezed right out of my lungs. Any move that I made triggered even more tightening of the muscles. At the hospital the doctor reluctantly gave me a muscle relaxant shot (right in the bum), some pain killers and more muscle relaxants to take home. I could tell, though, that he wasn't quite sure I was telling the truth about my pain. He had this look in his eye that perhaps I was a drug addict just begging for more.
The thing is, I'm actually a very strong person and can typically handle a lot of pain. I think I inherited this trait from my father who brought me up as an athlete, having me on ice hockey skates at age 3 and on an all boys team by age 7. I have always been a tom boy and someone who refuses to go down easily. But this was different. Not only was I having fatigue and spasms but an array of other symptoms began to rear their ugly heads; I started to keep track of them all. There were so many symptoms at one point that I felt silly even telling the doctors about all of them. I'm sure that some people in my life thought I was a hypochondriac, thinking something was very wrong with me when it wasn't, and that was one of the hardest things to deal with. I felt very alone. As many doctors as I saw, as many emergency room visits as I made, not one person seemed to care enough or believe me enough to look deeper into the issue. My symptoms ranged from periodic nausea, dizziness, repeated infections, muscle and joint pain, sensitivity to light, heart palpitations, chest pain, achey body and eventually severe anxiety and depression. I couldn't seem to find someone that would help me investigate this so I decided to begin my own investigation.
I started doing research day in and day out. I think I started to worry my boyfriend (now husband) as I was constantly on the internet reading article after article about this disease and that disease. Each symptom that I had related to so many different illnesses that it was difficult to narrow it down. I went from one minute thinking I had Lupus to another thinking I had Multiple Sclerosis or Fibromyalgia or Chronic Fatigue Syndrome. So many diseases and so many symptoms my brain was mush after a while. At this point I had made so many doctor's visits that I think I gave up on that approach. I started to monitor my own health daily and at least try to manage the symptoms the best that I could. I started to notice what foods made my symptoms worse and about 3 years into it I figured out a pretty good system for myself. Very low carbs, very low sugar and hardly any alcohol. Those were the three things that effected me the most. Although I had it somewhat under control, I still felt somewhat helpless. What was wrong with me? Yes, I was managing the symptoms and was able to function on a daily basis, but not without discomfort and always having in the back of my mind this mystery illness. Not to mention my three vices happened to be what made me feel worse; I just wanted to be normal and go out for a drink with friends without suffering the consequences.
Eventually I went to see a new doctor in Arizona where my husband and I had moved for a basic check up. I explained to her casually what I had been through and that something was wrong but I didn't know what. This time I wasn't desperate for answers; this time I went in there with no expectations as I had lost hope when it came the medical field. Despite my attitude, I have to say, this Nurse Practitioner was the first medical professional to actually take the time and listen to me. She made eye contact. She asked me questions. She wrote everything down. I could see in her eyes that she was actually quite concerned and even curious about what might be wrong. We did many tests and labs, as many as I could afford, and nothing seemed out of the ordinary. My liver was fine, my kidneys were fine, I didn't have diabetes, my blood tests were normal. Nothing was coming up. Defeated once again I felt like maybe I just needed to accept that I would never know. Perhaps not knowing was my reality.
As defeated as I was I felt like I was getting closer and closer to figuring out this mystery. Having tests that came out normal actually gave me more to work with; the process of elimination. One thing that had really stood out to me over the years was my sudden intolerance to alcohol. I had always been able to drink previously with no issue (other than some swelling in my hands and feet which is something a lot of my family members experience). But now, it made all of my symptoms worse the next morning and my hangovers were intolerable. My whole body would actually ache, my muscles and even my skin would ache. I know that sounds strange but it felt like a full body bruise. I started to research this and I came across an article that had something to do with how Lyme Disease patients struggle to process alcohol and it can actually feed the Lyme Bacteria, in turn making symptoms worse. It was like a light bulb went off. This was the first article I had read that seemed to point me in the right direction. A lot of other things during my research had made sense to me in the past but I had never found anything this specific to a symptom I was having. At my next doctor's visit I was getting more lab's done and last minute I asked if they could add on the Lyme Disease test. The phlebotomist checked and said that would be no problem. I was excited. Perhaps this was it? Would I finally have my answer? A week later I went back in to go over my results. "So everything looks totally normal here", as she scrolled down the lab report, "Everything is fine on these tests. It seems like you're blood sugars are normal, you're liver enzymes...wait a minute, what's this. Emily, your Lyme test is positive."
I went home that day in disbelief; still to this day I have a hard time believing that I actually know what is wrong with me. I have Lyme Disease. I have to repeat that to myself over and over again. I have Lyme Disease. I got so used to researching and not knowing that my brain doesn't seem to comprehend that there is no more searching to be done. It is time to heal now. But, unfortunately, healing from Lyme Disease is not that simple.
In your ideal Lyme Disease case, which many of you may be familiar with, the patient discovers a tick on their body followed by a circular red rash that is very distinct. This then develops into flu like symptoms and then, hopefully, a doctor's visit. Antibiotics are administered and then most patients go back to their normal lives. In your not so ideal case, which many people are unaware of, the patient does not realize they have been bit by a tick, does not develop the typical rash and develops flu like symptoms which are then treated as just that: the flu. If the patient does not get treated with antibiotics right away the Lyme bacteria have time to spread into the body: the muscles, the joints and in more severe cases the nervous system and the brain.
My case is the not so ideal one. I don't exactly know when I contracted the disease. I did grow up in New England and was born 60 miles from Lyme, Connecticut where the disease was originally discovered (and is rumored to actually be a bioweapon created by man, which is a whole different blog post alltogether). My Mother says that when I was 3 years old I had a very large tick on my neck but I never developed a rash or exhibited any symptoms at that time. In high school I have vague memories of being in contact with ticks but have no specific memorable events. All in all, I don't know when I contracted the disease but I do know when I started to develop symptoms. Some doctor's theorize that the human body can manage/fight the bacteria up until a certain trigger event, whether that event is the onset of an additional virus or extreme amounts of stress, either one can produce the onset of symptoms. Whatever the case, it seems that the typical Lyme story is not applicable to in all cases. The diseases has also been nicknamed "The Great Imitator" due to it's resembling many other illnesses. To top that off, the bacteria of Lyme Disease comes with "co-infections": infections that it travels with, like friends or buddies, or pals. These multiple bacteria strains live together in a bio-film, a protective casing, which render it un-detectable, protected from harm, and very difficult to diagnose.
I never imagined that I would be affected by chronic illness. Having always been a healthy and active person I feel somewhat blindsided by all of it. Life seems to do that, doesn't it. On minute you're walking highlines across the desert canyons and the next you're chronically ill. On the bright side, I am not one to give up. My father not only trained me as an athlete but he also taught me to keep pushing forward, no matter the circumstances. This will not take me down. As difficult as walking highlines once was for me it does not compare to the challenge this disease has presented. I thought I had reached my peak when it came to challenges, I thought I had done the hardest thing I could do, but I was very very wrong.
My life now is very different than it once was. I am still the same person with the same adventurous spirit but I am limited by how I feel. Some days I feel great and am up for a long hike or rock climbing or anything fun. Other days I am fatigued and achey and don't want to get off the couch. This is not only hard for me but it is also difficult for those around me to understand. I think it's hard for people to truly understand the disease and that every day is different. I find myself feeling lazy on the days I can't get up. I blame myself for not pushing through it. This is something that I am working on. I don't want to feel guilty for how I feel and right now that is one of my challenges.
Treatment also effects the way I feel. Right now I am taking various dietary supplements, monitoring my daily diet, seeing a naturopathic doctor here in Flagstaff and undergoing Ozone Therapy. Lyme Disease thrives in low oxygen environments therefore by infusing the blood with oxygen it creates an environment that the diseases no longer thrives. You may be thinking, "But we breathe oxygen everyday, right?" Well yes. But, our bodies can only access a limited amount. By infusing the blood with even more oxygen it really kicks this disease in the butt. When the bacteria dies, it emits toxins into the body which cause what is referred to as a "Herxheimer Reaction" or "Die off". The toxins make you're usual symptoms much, much worse. It's the "feel worse before you feel better" idea. As I delve into the healing process I am so grateful for those that support me and love me. I thank you. I also thank you for taking the time to read this and perhaps gain more understanding not only into my story but into the story of all "Lymies" out there going through the same thing. Until next time, onward and upward. Through the challenges we blaze, as without them life is meaningless.
(If you are interested in learning more about Lyme Disease, the website that I have found to be the most useful is www.lymedisease.org)
I am asking for support in the healing process. At this point in my life, I will not be able to afford the treatments that will be most effective in beating this. Because Chronic Lyme Disease is not well researched and is very difficult to erradicate, I need to see specialists. Most specialists that are well versed in Lyme are Naturopathic Doctor's and as many of you may know, Naturopathic Doctor's provide alternative treatments that are not covered by insurance. I have quit my job in order to allow myself to heal properly, take care of my dog Belle who has cancer and pursue school full time. I found that not only did I need to leave for my dog and for school but the job was becoming too difficult or me physically and mentally. I was a tour guide for Pink Jeep Tours in Sedona and being out in the elements for 8-10 hours a day was proving to be too much for my body to handle. The sun exposure, breathing in dust and smoke from wildfires, talking and engaging for so many hours on end and bouncing around was completely exhausting and I just found myself deteriorating. This may be the first time since I was 15 years old that I have not worked. It feels a little strange as I have always put a lot of pressure on myself. But, I know deep down that it's the right thing to do. At this point I am taking a variety of supplements, monitoring my diet, undergoing Ozone Therapy, detoxing and resting as much as possible. It will be a tough battle but I know that I am strong enough to get through it with the support of my husband, my family and my friends. I thank you with my whole heart for considering helping me out in any way you can. In a perfect world, I would not have to ask, but I desperately want to heal and I am looking forward to life after Lyme. Below you will find a recent blog post I wrote about what I have been going through for the past 4 1/2 years. Hopefully it will not only educate people on Lyme Disease but also allow those struggling as well to know they are not alone.
Sincerely,
Emily
- Ozone Therapy: $175-550 per treatment (dependent on how aggressive the patient wants to go).
- Hyperbaric Oxygen Chamber: $150 per treatment
- Supplements: $15-70 per bottle
- Massage for Detoxing: $80 per treatment
There is stength in difficulty.Fighting Chronic Disease - My Story
(www.theascentofem.blogspot.com)
It was 2012, early spring, and I had just returned to the desert town of Moab, Utah from a brief hiatus from the small town life. Moab is an incredible place if you love adventure but being only about 5,000 people or so it get's overwhelming at times, your typical small town drama. I had decided to take about a 6 month break and spent some time in the Denver/Boulder, Colorado area with some friends. Upon returning to the desert I started to notice that I was much more fatigued than usual but blew it off thinking I might just have a bug or something. Weeks and weeks went by and not only was I fatigued but I began to have severe cramping in my shoulder blades; I found myself constantly asking friends for shoulder rubs (and thank you for obliging, by the way). One episode was so extreme that I was actually brought to the ground and begged my friend to please just make the cramping stop. I prayed that he may actually have magical powers and could perhaps suck the pain right out of me; unfortunately he was not magical. It was so debilitating that I could hardly breathe. We had driven about an hour out of Moab and were preparing for a long hike to rig a highline but I was completely incapable of continuing. What's interesting is this was not my first experience with being brought to he ground by muscle cramps. I had had these cramps before, many years prior. My first "back spasm", as I have come to call them, was in 2008 in my college dorm room in North Carolina. At that time I was brought in an ambulance to the hospital because the spasm had lasted over 5 hours and I literally could not get off the floor of my room. That posed a problem for the EMT's as they didn't know how to get me out of the second floor dorm room. I ended up crawling slowly to the chair and they carried me down the stairs in a seated position. For those of you that have never had a back spasm, it is not minor. The muscles tense up so tightly that it actually pulls muscles from back, your sides and even your chest. It felt like the air was being squeezed right out of my lungs. Any move that I made triggered even more tightening of the muscles. At the hospital the doctor reluctantly gave me a muscle relaxant shot (right in the bum), some pain killers and more muscle relaxants to take home. I could tell, though, that he wasn't quite sure I was telling the truth about my pain. He had this look in his eye that perhaps I was a drug addict just begging for more.
The thing is, I'm actually a very strong person and can typically handle a lot of pain. I think I inherited this trait from my father who brought me up as an athlete, having me on ice hockey skates at age 3 and on an all boys team by age 7. I have always been a tom boy and someone who refuses to go down easily. But this was different. Not only was I having fatigue and spasms but an array of other symptoms began to rear their ugly heads; I started to keep track of them all. There were so many symptoms at one point that I felt silly even telling the doctors about all of them. I'm sure that some people in my life thought I was a hypochondriac, thinking something was very wrong with me when it wasn't, and that was one of the hardest things to deal with. I felt very alone. As many doctors as I saw, as many emergency room visits as I made, not one person seemed to care enough or believe me enough to look deeper into the issue. My symptoms ranged from periodic nausea, dizziness, repeated infections, muscle and joint pain, sensitivity to light, heart palpitations, chest pain, achey body and eventually severe anxiety and depression. I couldn't seem to find someone that would help me investigate this so I decided to begin my own investigation.
I started doing research day in and day out. I think I started to worry my boyfriend (now husband) as I was constantly on the internet reading article after article about this disease and that disease. Each symptom that I had related to so many different illnesses that it was difficult to narrow it down. I went from one minute thinking I had Lupus to another thinking I had Multiple Sclerosis or Fibromyalgia or Chronic Fatigue Syndrome. So many diseases and so many symptoms my brain was mush after a while. At this point I had made so many doctor's visits that I think I gave up on that approach. I started to monitor my own health daily and at least try to manage the symptoms the best that I could. I started to notice what foods made my symptoms worse and about 3 years into it I figured out a pretty good system for myself. Very low carbs, very low sugar and hardly any alcohol. Those were the three things that effected me the most. Although I had it somewhat under control, I still felt somewhat helpless. What was wrong with me? Yes, I was managing the symptoms and was able to function on a daily basis, but not without discomfort and always having in the back of my mind this mystery illness. Not to mention my three vices happened to be what made me feel worse; I just wanted to be normal and go out for a drink with friends without suffering the consequences.
Eventually I went to see a new doctor in Arizona where my husband and I had moved for a basic check up. I explained to her casually what I had been through and that something was wrong but I didn't know what. This time I wasn't desperate for answers; this time I went in there with no expectations as I had lost hope when it came the medical field. Despite my attitude, I have to say, this Nurse Practitioner was the first medical professional to actually take the time and listen to me. She made eye contact. She asked me questions. She wrote everything down. I could see in her eyes that she was actually quite concerned and even curious about what might be wrong. We did many tests and labs, as many as I could afford, and nothing seemed out of the ordinary. My liver was fine, my kidneys were fine, I didn't have diabetes, my blood tests were normal. Nothing was coming up. Defeated once again I felt like maybe I just needed to accept that I would never know. Perhaps not knowing was my reality.
As defeated as I was I felt like I was getting closer and closer to figuring out this mystery. Having tests that came out normal actually gave me more to work with; the process of elimination. One thing that had really stood out to me over the years was my sudden intolerance to alcohol. I had always been able to drink previously with no issue (other than some swelling in my hands and feet which is something a lot of my family members experience). But now, it made all of my symptoms worse the next morning and my hangovers were intolerable. My whole body would actually ache, my muscles and even my skin would ache. I know that sounds strange but it felt like a full body bruise. I started to research this and I came across an article that had something to do with how Lyme Disease patients struggle to process alcohol and it can actually feed the Lyme Bacteria, in turn making symptoms worse. It was like a light bulb went off. This was the first article I had read that seemed to point me in the right direction. A lot of other things during my research had made sense to me in the past but I had never found anything this specific to a symptom I was having. At my next doctor's visit I was getting more lab's done and last minute I asked if they could add on the Lyme Disease test. The phlebotomist checked and said that would be no problem. I was excited. Perhaps this was it? Would I finally have my answer? A week later I went back in to go over my results. "So everything looks totally normal here", as she scrolled down the lab report, "Everything is fine on these tests. It seems like you're blood sugars are normal, you're liver enzymes...wait a minute, what's this. Emily, your Lyme test is positive."
I went home that day in disbelief; still to this day I have a hard time believing that I actually know what is wrong with me. I have Lyme Disease. I have to repeat that to myself over and over again. I have Lyme Disease. I got so used to researching and not knowing that my brain doesn't seem to comprehend that there is no more searching to be done. It is time to heal now. But, unfortunately, healing from Lyme Disease is not that simple.
In your ideal Lyme Disease case, which many of you may be familiar with, the patient discovers a tick on their body followed by a circular red rash that is very distinct. This then develops into flu like symptoms and then, hopefully, a doctor's visit. Antibiotics are administered and then most patients go back to their normal lives. In your not so ideal case, which many people are unaware of, the patient does not realize they have been bit by a tick, does not develop the typical rash and develops flu like symptoms which are then treated as just that: the flu. If the patient does not get treated with antibiotics right away the Lyme bacteria have time to spread into the body: the muscles, the joints and in more severe cases the nervous system and the brain.
My case is the not so ideal one. I don't exactly know when I contracted the disease. I did grow up in New England and was born 60 miles from Lyme, Connecticut where the disease was originally discovered (and is rumored to actually be a bioweapon created by man, which is a whole different blog post alltogether). My Mother says that when I was 3 years old I had a very large tick on my neck but I never developed a rash or exhibited any symptoms at that time. In high school I have vague memories of being in contact with ticks but have no specific memorable events. All in all, I don't know when I contracted the disease but I do know when I started to develop symptoms. Some doctor's theorize that the human body can manage/fight the bacteria up until a certain trigger event, whether that event is the onset of an additional virus or extreme amounts of stress, either one can produce the onset of symptoms. Whatever the case, it seems that the typical Lyme story is not applicable to in all cases. The diseases has also been nicknamed "The Great Imitator" due to it's resembling many other illnesses. To top that off, the bacteria of Lyme Disease comes with "co-infections": infections that it travels with, like friends or buddies, or pals. These multiple bacteria strains live together in a bio-film, a protective casing, which render it un-detectable, protected from harm, and very difficult to diagnose.
I never imagined that I would be affected by chronic illness. Having always been a healthy and active person I feel somewhat blindsided by all of it. Life seems to do that, doesn't it. On minute you're walking highlines across the desert canyons and the next you're chronically ill. On the bright side, I am not one to give up. My father not only trained me as an athlete but he also taught me to keep pushing forward, no matter the circumstances. This will not take me down. As difficult as walking highlines once was for me it does not compare to the challenge this disease has presented. I thought I had reached my peak when it came to challenges, I thought I had done the hardest thing I could do, but I was very very wrong.
My life now is very different than it once was. I am still the same person with the same adventurous spirit but I am limited by how I feel. Some days I feel great and am up for a long hike or rock climbing or anything fun. Other days I am fatigued and achey and don't want to get off the couch. This is not only hard for me but it is also difficult for those around me to understand. I think it's hard for people to truly understand the disease and that every day is different. I find myself feeling lazy on the days I can't get up. I blame myself for not pushing through it. This is something that I am working on. I don't want to feel guilty for how I feel and right now that is one of my challenges.
Treatment also effects the way I feel. Right now I am taking various dietary supplements, monitoring my daily diet, seeing a naturopathic doctor here in Flagstaff and undergoing Ozone Therapy. Lyme Disease thrives in low oxygen environments therefore by infusing the blood with oxygen it creates an environment that the diseases no longer thrives. You may be thinking, "But we breathe oxygen everyday, right?" Well yes. But, our bodies can only access a limited amount. By infusing the blood with even more oxygen it really kicks this disease in the butt. When the bacteria dies, it emits toxins into the body which cause what is referred to as a "Herxheimer Reaction" or "Die off". The toxins make you're usual symptoms much, much worse. It's the "feel worse before you feel better" idea. As I delve into the healing process I am so grateful for those that support me and love me. I thank you. I also thank you for taking the time to read this and perhaps gain more understanding not only into my story but into the story of all "Lymies" out there going through the same thing. Until next time, onward and upward. Through the challenges we blaze, as without them life is meaningless.
(If you are interested in learning more about Lyme Disease, the website that I have found to be the most useful is www.lymedisease.org)
Organizer
Emily Christine
Organizer
Flagstaff, AZ