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Sedona, Arizona, United States
~Adventure Seeker ~ Animal Lover ~ Lifetime Learner ~ Battling Lyme ~ Contact: emily.sukiennik@me.com

Tuesday, August 30, 2016

Fighting Chronic Disease - My Story

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 hard 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)




Thursday, August 21, 2014

Why you haven't seen me online for a while.

It's been a very long time since I've written on my blog, the last post being about an individual that I knew who died BASE Jumping and how that had effected me. I guess that says something in and of itself....I think it had more of an impact on me than I originally thought it did. 

For the longest time I was very, very involved in the outdoor adventure community. Living in Moab, Utah (the now mecca for outdoor adventure sports) and myself being a slackliner and highliner I surrounded myself with all types of athletes from rock climbers to other highliners, BASE Jumpers, Wingsuiters, "rope swingers", mountain bikers, and many others. It was a thrill and I felt like I was in my element. I loved it; it was so empowering to be surrounded by other adventurers and in some respects we inspired and encouraged one another to push our limits. I felt like these were my best friends and that I was happier than I had ever been. But on some occasions it seemed to be the opposite. In order to be successful in the extreme athletics that we were involved in it started to become competitive and those that I thought were my friends somehow became my competition, which was never the intention. Not only that but people were starting to get hurt, and people were even dying.







I started to feel like it wasn't worth it anymore. People were injuring themselves and dying all around me. I had a friend in 2011 fall while rock climbing which resulted in brain damage. In 2012 there were multiple BASE Jumping accidents; people were crashing into the rock walls after jumping and having to get rescued and flown to the nearest hospital. A friend of mine broke her femur base jumping and is now, I'm sure, stuck with thousands and thousands of dollars in medical fees. Another person I knew passed away while BASE Jumping and then a year later, two more. Then, another rock climbing accident that resulted in death. At that point I really started to question why I was involving myself in such risk in the first place. While I was on a highline I felt free, I felt challenged and I felt powerful. I loved the feeling of accomplishing something after pushing myself and trying so hard. So much fear was involved and overcoming that fear was when I felt invincible. But was it really worth it?

For a while, I was very well known within the slacklining and highlining community. (Please see my website www.slacklinedynamics.com if you would like to see some of my accomplishments). I was one of very few females who could walk a highline successfully, especially long ones. I was walking pretty long lines and was able to perform a variety of tricks in the exposure of lines hundreds of feet high. I could keep up with the boys. My ego was flying high and I felt like that was what I was meant to be doing and I thought that I would be doing it forever. But, the thing was....I wasn't making any money doing it. Nobody was willing to pay me to highline whether it was for a periodical, a tv show, a performance or whatever else it was. I kept getting the following words "Hey! We would love to feature you in our magazine/newspaper/article/tv show but we can't pay you....this will be great exposure for you!" At first I thought this was alright and I let it slide. At least I would get exposure so that in the future people would know who I was and then would be able to pay me! But years started to go by and I kept hearing the same story over and over again...."This will be great exposure for you! Sorry we can't pay but you will be on TV!". I was really starting to get frustrated and so the passion that I had for what I was doing started to dwindle as it became harder and harder to get by.

The two things that really started to separate me from the sport that I had once loved were the injury and death's surrounding me and the lack of pay. At one point I was living out of my car with my dog just so that I didn't have to pay rent so that I could actually continue to do what I wanted to do, which was make it as an athlete and an artist. It was an experience that I chose to go through because I thought it was my best chance.

I started to realize that perhaps my type of athlete and artist just don't get paid and that's how it's set up to be. In order to get attention and get published to "eventually" make money I needed to have photographer's, but when the photographer would then contribute their photo's to the media they would request money from whomever was publishing the story. A lot of the photographer's would say "Hey Emily, so if I do get paid a decent amount of money for this I will certainly split it with you". But alas, that didn't happen even once within the four to five years that I was seriously pursuing the sport. So all in all, the athlete or artist doesn't get paid but the person holding the camera and/or the publisher or magazine or TV show does? I was out there performing my art and ultimately risking my life and I all I was really getting was my ego stroked? There seemed to be something very wrong with that picture and it seemed that I was just getting jerked around, manipulated and used for someone else's benefit. Without the artist/athlete.....there is no story to begin with so how is it possibly that I wasn't getting compensated?

Eventually I became more than fed up with my situation and moved away from Moab, Utah. Nowadays, I hardly slackline anymore. I have hosted and taught at a few women's slackline events which is something that I still very much enjoy, but I rarely slackline on my own. Nowadays I work full time for a company in Arizona and am loving life more than I ever have before. Since I have fallen away from the "big dream" of making it as an athlete I am able to stop and smell the roses. Working full time I make enough money to support myself and my family. I have a nice roof over my head. I no longer stress about "getting this gig or that gig" or getting paid for a performance or an article. Instead I work for my own money and get paid fairly for it. I enjoy my days off more than I ever had and I experience such joy in the little things like my dogs, music, flowers, weather, my fiance, just a normal everyday hike or being safely on the ground rather than up in the sky.




All of this being said I think the main point that I would like to make is that there is something very wrong with how athletes and artists are compensated. The way that everything is structured really doesn't allow for these individuals to succeed. It takes way more work and hardly any compensation for it, and sometimes it involves risking your life. I know top-athletes to this day that do not get paid fairly for what they do and what they have accomplished. I wanted to bring some light to this and also explain why I have dropped off the radar a little bit. I still love the sport and love what it has given to me and my progression in life. I am incredibly grateful. Having been able to push myself to those limits really helped me develop as a human being in ways that I can't explain. I am a different person and a stronger person than I would have been without it. Perhaps someday in the future my excitement vigor for the sport will return and you will see me out there again but for now I am very happy where I am....on the ground. :)

PS- Oh yeah, and I've also taken a pretty big interested in the search for Sasquatch. Perhaps I'll start writing about that on my blog instead....

Wednesday, August 21, 2013

The Elation and the Devestation

Since moving to Moab in 2010 to participate and experience the extreme sport "mecca" of the world, I have experienced more death than I ever have before. This is not something I EVER could have prepared myself for or ever would have expected. Death's occurring in the sports of climbing, rope swinging and flying; this year has been particularly extreme. I find it very difficult to process it all. I don't know how to react considering that I participate in the same dangerous sports that these deaths have occurred within and my boyfriend, Mark, does as well. Each time it has been a slap in the face and the most recent passing, Mario Richard, has particularly effected both Mark and I.  Mario was one of the world's most talented and passionate fliers having over 7,000 Skydives and 2,000 BASE Jumps without so much as a sprained ankle over a span of 25 years.  It is bringing up a lot of questions that I have about my lifestyle of choice and how I see the world in general. What does it all mean? How could even the best of the best die doing what they worked so hard to master?

Mario was one of our role models, both him and his beautiful wife Steph. We admired them immensely not only for their loving relationship but also their achievements and their maturity. Mario was especially an inspiration to Mark who also flies. He looked up to Mario for his long time safety record, his achievements, his business "Moab BASE Adventures", his willingness to teach others and his overall positive energy even through times of turbulence. We are both devastated and cannot fathom what Steph is going through. My heart goes out to her in this tragic time and I am hoping she finds peace within this loss. I will always remember my first flight through the deep red desert canyons which I could not have experienced without Mario and his passion for human flight. Thank you. You will always be remembered and will continue to serve as a role model for us regardless of where you are. A friend of mine has said, "They are not gone, they have only changed residence".




Sunday, August 4, 2013

The laughter and the happy

I just took some time to read through some very, very old blog posts and let me just tell you....THAT was eye opening. I was so happy!!!!! I was writing about hilarious encounters I had with people, strange people, dogs, things that made me laugh...wow. I am in shock at how much I have changed over the years and how caught up I became in "being successful". I just got off the phone with my sister and in explaining my posts to her i said "the laughter and the happy!!!" and she suggested that be my new motto :) I think that's a great idea. Wow....my posts actually used to be quite funny. Time to get back to that happy place!!!

Saturday, August 3, 2013

Going Facebook Free

Today is my first day Facebook Free and I can't tell you how excited I am to be doing this. Facebook has been such a big part of my life as I'm sure it has for many people in today's world. As fun as it can be seeing what everyone and their mother is doing on a minute by minute basis, I was really starting to notice how it was negatively affecting me and the overall quality of my life. I was so consumed with what I was posting on Facebook and what other people were posting on Facebook rather than being consumed with what was actually going on in my daily life. Somehow I was able to take a step out of it and look at it from an outside perspective: my life had become more virtual than it was real! Today being the first day, it's a bit funny, but I was actually thinking out of habit that I wanted to make a post on Facebook what it was like not being on Facebook. This made me laugh. This is the exact reason that I am going to "detox". I don't want my automatic response to any event to be posting about it. Rather, I want my response to be pure enjoyment and sharing it with those that are around me. Being the first day I can see that this is going to be a challenge but I'm ready! I'm so ready for this change and am beyond excited to see how it affects me and my overall happiness.

I am looking forward to continuing this blog and now that I will be Facebook Free I will feel more compelled to actually write. I have always loved writing but neglected it over the past few years. It really allows me to process my feelings and what I'm going through rather than bottling them up. That being said I will continue to write about my struggles, my experiences and everything in between. Time to enjoy the day!