Nine Years and Still Counting

Today Marks Year Nine

As the above says, today 1/26/20 marks my ninth year of battling Lyme disease. In the beginning I had no idea I had Lyme. I had broken my arm and then never felt well again, I felt this way, then worse and worse for several years before getting any idea as to what was truly wrong with me.
For my full story, see this post from years and years ago.

I look at the last nine years and I almost want to scream, every single year has been different in thousands of ways. Consistency has not been my forté at all for how I have felt with being ill or how I had to deal with the ever rolling stresses handed to me. The first year was the beginning of the stress, I thought I was just sick from a drug interaction or from the stress of breaking multiple bones. Then I got sicker and I thought something more had to be wrong.

Year six and seven were probably the worst of the worst. I discovered anxiety and severe OCD somewhere in that timeline, I learned what starving and not being able to eat meant. I discovered new fears and pains that I had no idea were possible.
I prayed a lot. I cried a lot. I complained many times over. I made it.

Year eight was a big changing point, I began exercising for the first time in my life and was able to really begin enjoying it! I began feeling peace and calmness again in my life, something that I felt was gone forever at one point. It felt as if my body had begun "waking up", my alertness began coming back and so did my energy. Consistency starting walking into my life and pain began walking out.

Looking back, I see several people who have come and gone from my life. Some I miss and some I hope have lost my number, and truthfully I do blame lyme and what it did to me for why I left some people behind and why some people left me in the dirt. Necessities breed ingenuity, I had a great need for "real" people in my life. People that just enjoy "fun" on a Friday night and nothing else at all, no longer had a place in my life. Some of these people could not handle how I "felt" all of the time, they did not appreciate how I had too many feelings and that none of these feelings were "fun".
And some of these people I no longer felt like being around because they are rather shallow. Lyme taught me a lot about looking deeper than skin deep and it taught me that what people don't say can be louder than what they do say. I learned to listen to the world going around instead of only hearing what was placed directly in my face, which is hard to explain.

Looking back I can also see how Lyme landed me my job, which I love so much. Lyme shaped my personality into a more caring spirit, I want to work with people who need help and need people to understand. Not just a 9-5 which serves no long term purpose.
I learned that living with a purpose and a meaning was capable of reshaping my entire outlook on life.

Nine years has taught me a lot, I pray that this is the year in which I can say Lyme no longer causes me illness. To be further specific, I pray that the lyme bacteria and the damage that has been done to my body, emotions, and spirit will no longer cause me disease. Year eight has taught me that my patience has begun paying off. I go to the gym all the time, since the beginning of December I have been to the gym on average 4x per week and I have gotten into my sauna 5x per week. These things have made me feel so satisfied and happy. I do not know if its because they are helping me so much, or if I am just that grateful that I can finally exercise on a consistent basis for the first time in my life.

I cant believe I have been sick nearly a decade, it is scary to think about how quickly all of it has burned past. I am grateful though that the last few years went by quickly, because they were nothing short of horrible. If I could never relieve that part of my life, that would be great.

I thank God for all of my progress. I have prayed that I will come out on the otherside healthier and happier than ever before, without trauma and damage. I think that one day this goal will be achieved.

Heres to another benchmark year in which changes and progress and growth will be embraced and welcomed :)

Seasons Changing

The time for seasons of my life to change has come once again. School is starting back this week. My best friend is leaving to live in Missouri tomorrow. Another friend of mine leaves the day after, then my sister leaves this weekend.
I will once again watch my life become engulfed in school assignments. Life will get busy and I won't be seeing my friends very often. My best friend moving 10 hours away has probably affected me the most. He is the person I go to for everything, he's my support, my encouragement, my safe place, and of course the person I have the most fun with ( I promise I have fun and do normal fun things with my friends). Now I will have very limited access to him. I don't handle big changes all that well, I am already a rather emotional person these days. My emotions run their own way without rhyme or reason more often than not, but with my best friend leaving...I have been a mess.

I am taking care of my best friends fish now that he's leaving. Last night he brought his tank and his one fish (Sherman) to my house about 11pm. We got it setup besides one of my tanks and I now have the honor of keeping Sherman for a long time to come.
My friend stayed a while at my house because we knew it would be one of the last times we could hang out, maybe even the last before he leaves. I felt horrible, this last weekend has been extremely stressful. I worked a full day. No sleep. The usual human complaints.
It was so great hanging out but we did reach the point where I had a breakdown. I just lost it and started crying and thats all I could do. I couldn't speak. All I could do was just cry harder. I felt so pathetic, why is everything such a big deal to me? But my best friend was there for me. He hugged me until I could finally speak again. I was so worn out I couldn't stand up anymore, I think the first words I spoke to him were something along the lines of "I have to sit, I can't stand any longer". At this point it was after 1AM, he needed to go home but I was delaying it with my emotional neediness.
He held onto me longer and told me he would walk me to my room to make sure I could walk up the stairs alright without blacking out or collapsing (that has been an issue this summer, which he has first hand witnessed).
And because he's awesome, he let me convince him into staying the night with me. So we both walked to bed and I got to keep him for the night. I felt horrible, I haven't slept well this weekend and ive been burning the candle at both ends, not a great combo for anyone no matter their health situation!
My friend stood by me and helped me through it. I couldn't have asked for anything more. It wasn't planned but hey, I needed someone and he wanted to be that someone. He dragged me on to bed so I could finally relax and get some rest for the first time in several days.

It means so much to me to have someone there for me like that when  I get sick. I hate being alone when my mind and or body decide to plummet into a black hole. Just having a friend there for support takes a lot of the pressure and loneliness out of the picture. Having my best friend there for me is even better. That meant more to me than anything I could dream up, its not easy being the outsider in a sick persons life but he knows he to help me out.

One of the things that made this weekend so stressful was the death of my grandfather. Friday morning my grandmother called my mom to inform her that she found my grandfather on the bathroom floor, dead. It was a total shock. He was not in bad health. They were supposed to be going on a cruise tomorrow for their 60th anniversary.
This last weekend instead was used to plan his funeral, which was today. His death was hard for all of us to deal with. I think we are all still in shock that he is gone.
We had some awesome friends help us out and bring us all a meal for after the service. The family came back to our house after the service and our friends had all the food and tables setup and ready to go, I don't think we could have asked for anything more.
Nonetheless, this has been a weekend of sudden and lasting changes. Emotionally I am worn out, physically I need rest. This time, its not just me but the whole family thats in the same boat as I am.

My Life, the Past Five Years

Today I want to share with you all an excerpt from a recent school presentation. Most of this I have shared with my blog readers in the past, but here I go again.

My Life, the Past Five Years

Lyme disease is spread by insect bites, most commonly ticks but also fleas and mosquitos. Any tick borne pathogen can be spread to the host in less than a minute. It does not take a tick 24 hours or even several days to transmit a disease. The most common symptoms are migrating joint pain, headaches, dizziness, brain fog, and swelling. There’s a catch, most common is a very loose term. Lyme disease can mimic over 300 diseases and can imitate nearly every symptom known. Recently it has even been found to cause tumors, certain cancers, and 8 out of 10 Alzheimer’s cases. 

Lyme disease is a lifelong disease, it has no known cure. About 80-90% of patients never reach long term remission. The ones that do reach remission commonly have a port placed in their chest or PICC line in their arm, and receive intravenous antibiotics several days a week, multiple times a day. There are very few clinics that treat full blown chronic Lyme disease in the United States. Most doctors do not believe the disease exist, for reasons unknown.

 

To pursue remission and stop the damaging effects of Lyme disease, I traveled to Wichita, Kansas. I chose this clinic because it is the only clinic in the United States that utilizes only natural methods to heal the body, better than before contracting the disease. There is only one other clinic like this in the world, the Paracelsus Clinic in Switzerland. I have stayed at the clinic a total of three weeks this year and will return for another week in August. I have reached about an 80% improvement; it is expected for me to reach remission this year.

As a child with chronic disease I have had the opportunity to learn so much more than others. I now have a Master’s degree in using Google, I can find the health section at the library walking backwards with my eyes closed, I learned compassion and understanding, and most of all I learned the importance of faith.

At 13 I had to become my own doctor, because no one knew what was wrong with me. It was my own persistence and research that brought me to where I am today. After reading countless books, internet articles, and watching every video I could find on YouTube I came to the conclusion I would not use antibiotics as a long term treatment method. In the last five going on six years of research I have not found one case of Lyme that has been cured without damaging, lasting side effects from antibiotics.  On top of that it takes on average 3-5 years of intravenous antibiotics to bring chronic Lyme disease into remission.

No Lyme literate medical doctor will tell you this. Only looking at other people’s experience will you find this information.

Lyme disease is not a disease recognized by most doctors, not just in the United States but all over the world. Every Lyme patient has to search, ask around, and dig for that one doctor within reach that could possibly help them find relief.

One thing I learned for sure, without a doubt is patience. It took four years to find a doctor that had enough experience under his belt to not just relieve symptoms, but to bring me too remission-possibly to the point of cure. Time will tell.

Lyme disease has totally and completely changed my life. The last normal, scheduled, teenager program I was involved in for fun was Boy Scouts. I was the first in my patrol to reach the Rank of Eagle, I was the first to completely fill my sash. When I was 14, I had to quit that too because I no longer had the energy and focus to move further in the program. I have stayed a member and go to meetings whenever I am needed, but that’s all I do for them.

It took a long time to realize this, but my life experience truly is different than the standard. I have not missed out on anything; I have been given my own unique opportunity.

Any teenage male from the ages 12-18 can join the Boy Scouts and earn a Merit Badge. It’s a black and white process, fill out the paperwork and do the required activities-you just got yourself a badge. Having a chronic disease is anything but black and white. Every day is different; I do not know what I will be doing or what will even be able to do until the minute I do it. Even throughout the day things change, it’s normal to wake up sick, perk up at some point, crash, and then reach what seems to be a steady medium. This day is not a literal 24 hour day, 80% of Lyme patients are insomniacs, and this whole process could cycle for 36+ hours without ever sleeping.

Even on the worst days where I never left the bed or stayed up for two days in a row, I had my faith. I knew everything would be okay. God’s timing is perfect; it takes time to learn life lessons. They cannot be taught in school, because school is only a program, it cannot teach you the every up and down swing life can and will throw at you.

I would have never learned compassion for other people, suffering in ways that cannot be seen by those who have not had the experience themselves. I would never had seen how perfect Gods timing really is if I didn’t have a reason to look for it. Waking up feeling dead is quite the motivator to look!

I would never have seen the groups and droves of people with chronic illnesses that have no one to reach out to them. Most importantly of all, I would have never seen the reason to be the one to reach out, if I hadn’t been there myself.

 

When I wrote this for my presentation, my goal was to not show people that all suffering is worthless and horrible. Everything happens for a reason and through all things there is a lesson. If you can see the reason for your own life, you will always be able to pull yourself out of depression and you will always conquer you battles.