Monday, June 26, 2017

6 things I never thought I'd do since my diagnosis with Lyme

I have had Lyme for 3 and a half years now. I was diagnosed not quite 3 years ago. Since then, I have gone through and experienced so many different things. These are just a few of the things I have done, that I never thought I would have done, since my fight against Lyme.

1- Go gluten free

I used to tease my celiac cousin, relentlessly I might add, for not being able to eat pizza, and sandwiches and pasta. Pretty much all the good things in life. It is so karma for me now, to go gluten free to try and stop the inflammation in my system. I never, would have thought I would have made that diet change.

2- Get used to needles

I used to be the biggest needle-baby ever. I remember being 13 and hiding from my mama when she wanted me to get a flu shot, I would get super sweaty, my hands would get clammy, I was a weenie! However, the tables have completely turned. The first blood work I had done, before Iw as even diagnosed, cost me 27 vials of blood in one sitting.  I almost passed out, and I was definitely crying in the chair. Now, I actually watch the needle go in, I don't even break into a sweat. I get at least 8 vials of blood work done every 2-3 months when I go see my doctor, and last summer I used to do IV Chelations a couple times a week. Needles, amazingly don't bug me anymore.

3- Go to counseling

I never, in my wildest dreams would have thought I would go to a counselor for depression and anxiety. Almost 3 years ago I found myself in desperation for a counselor to help me deal with PTSD, depression, and the mental pain that I couldn't shake. I met with 2 different counselors for 2 years and I have to say, it was very hard for me to realize, I needed more help than the medical treatments.

4- Befriend the pharmacist

I go into the pharmacy, or my mama comes back from picking up a bunch of prescriptions and they are always asking how I'm doing. They know who I am, so when I walk in they already have the bags ready for me. You could say we are on first name basis too.

5- Start this blog

I think my old self would find this blog to be the most embarrassing thing that I do now. When people started telling me to start up this blog, I immediately shut down the idea. I didn't want to be the type of person to post my feelings onto the internet for everyone to see. That was NOT me. However, I needed more of an outlet to try and explain what I was feeling, and speaking the words wasn't working. So, I wrote, and I blogged. Blogging, even though I don't do it as often anymore, has helped me heal in so many ways that medicine, doctors and counselors could have done.

6- See a Naturopath

I used to think the "essential oils" stuff was a pyramid scheme mixed with some voodoo liquid junk to steal your money. Since getting Lyme, I have now realized that I can't beat it doing just prescriptions, or just doing natural herbs... I am currently on 1 prescription antibiotic, and 3 herbal antibiotics, I never thought I'd see the day when I did this sort of stuff. I also have done acupuncture and gone to saunas to detox, as well as done Ionic Foot baths.

All in all, you could say desperate times call for desperate measures, that is probably what I would say to my old self to try and explain why I have done these things that I never thought I would. However, I think there is more to it. I think that it is in the moments of desperation, I had to make changes I never thought I would make. Desperation, sickness, hardship, trying times, all those forces drive change, sometimes for the bad, but for me, I see more good than bad coming from the changes I have made because of Lyme Disease.

-The Lyme Warrior

Sunday, April 23, 2017

"Try to be Alive"

I have recently had a turn of symptoms, for better. It has been slow, but since in January when I decided that this year I am going to get into remission, things have improved greatly. They have gotten so great, in fact, that I am now no longer taking antibiotics to treat my Lyme! This is a huge step in the process of getting better, and since I have been off of the antibiotics, I feel great! I used to take about 20 to 30 meds/supplements/vitamins/oils day and night, now I take about 4 in the morning and 8 at night! Things are improving in huge amounts.

For this summer, I am home from school. I attended college at Brigham Young University Idaho. This time for me to be home is for 2 things, 1-to work and 2-to get better. I am home to do Chealtion treatments. This is to help get rid of heavy metals that have built up in my body that Lyme hasn't allowed me to detox. Chelation is a simple poke of a needle and an IV is hooked up to it and a saline solution is pumped into me to clean out my body of heavy metals. In doing this, it is hopeful that my depression and anxiety will improve.
Me getting a Chelation Push last summer (2016)

Also, while I am home, I am going to take the advice of Ernest Hemingway:

I am going to, "Try to be alive." The main thing I like about this quote this the part on sleep. I still have to take sleeping medicine, I tried this week to go without it, and I didn't sleep the whole week, but 45 minutes. It was rough. However, this summer I want to work to the point where I don't need to sleep, really deeply, and the whole night, and wake up feeling completely rested, I don't want to do these with sleeping medicine. 

Lyme has hindered my way of living for a long time now, and I have made it work in ways that I didn't like, but I had to do. Now, I am fighting more than ever this summer to get my life back to the way that I want it. This summer I am going to "Try to be alive."

Monday, March 6, 2017

The Mental Path to Remission

I am working this year on getting into remission, that is my goal, and that is what I want. I have learned over the course of my battle against Lyme that it is as much mental as it is physical. And the mental battle is much more challenging because you can't take ibuprofen when you are feeling frustrated and it takes the frustration pains away. It just doesn't work that way. So I have come up with some ways that I am working on to help me heal mentally from Lyme.

2 years ago I wouldn't have been able to hike this waterfall, it is a simple hike normally,
 but my cousin and I were able to do it a couple weeks ago and to me, that is a mental win!

1- Learn from the losses

Some days you win some, and other days you lose, but it was Malcom X who said "Every defeat, every heartbreak, every loss, contains it's own seed, it's own lesson, on how to improve your performance the next time." And that is what I am talking about. 

I feel like most people would say that they have more losses in a week than gains, but that is just me. I could be wrong. However, I believe, and have had to change my mindset on losses. I used to think a loss, whether it was a card game, a basketball game, or you did really bad on a test, just meant either A) you suck, or B) someone or something was just better than you, or it was too hard and so you therefore lost. I used to think this way, but now I realize I am wrong. 

I now see losses as Malcom X saw them: as an opportunity to learn. I take a day that I am in more pain than usual, more depressed and down on myself, and I look back at it: I can see things like adjustments I need to make so I don't feel that way again, like eating, or exercising. I can see maybe how I got out of it and maybe make a mental note to try it for next time. Any time I feel like I have lost a day to Lyme Disease I have to realize I just have to change my mind set and ask, "what did I learn in this loss?" I tend to find I actually gained more than I really did lose.

This is hard to do sometimes, because sometimes we just have down right blow out losses. These days make me feel almost hopeless, and above all frustrated. However, I try in anyway possible to find the improvements and changes I can make along the way.

2- Take pride in the wins

I have talked about the losses, and while I have had many of these over the past 3 and a half years now, I have to recognize the wins. Sometimes it's not a whole day that is a win, rarely ever is a whole day a win with a chronic illness, but I take my wins by moments, not so much by days. 

The first way I can take pride in a win is by celebrating my successes. If I successfully made it a whole day without getting too down on myself about school, than I allow myself to feel good about that. It is a way of mentally rewarding myself, I'll watch a funny Olan Rogers video on youtube, I'll read something that doesn't have to do with my Nutrition 150 text book. There are little things I can do to celebrate my victories. For example, last week I was more upset than usual because I wasn't able to eat with a big group of people because of my diet restrictions. I didn't end up splurging and just giving into the delicious smell of cornbread and chili. So when I got home I made myself my own really good food. 

The second way I take pride in my win throughout the day is by making sure I take note of my victories. I can't always reward myself by making myself good food that I actually can eat, however, I can make sure I recognize when something good happened. I am still working on this part. An example might be if I wake up one morning and the day is great, than something happens later in the evening and I'm down or in lots of pain, instead of marking off that day as a loss because I forgot all the good stuff I was feeling earlier, I can take note of how well I felt earlier in the day, and then I don't necessarily have to see the whole day as a loss, but I can give myself credit that most of the day was alright.

3- Let the good in

I have noticed that if I do #1--learn from the losses, I can then see more wins as well, and by being able to see these I find I can let more good into my life. This helps boost my mentality into beating this disease mentally. I feel like by allowing myself to have good times I am also allowing myself to heal as well. And why shouldn't I be allowed to have goodness and happiness in my life? Why can't I fight Lyme and not be happy? As with anything else in my life that is hard. Why can't I be a hard working, exhausted, busy college student and yet, happy? I feel like sometimes all we need to do is allow ourselves to be happy, and have goodness in our lives.

These are simple steps I have undertaken to try and be more mentally sound while trying to beat Lyme this year. I am not perfect at them, but I feel like they are meaningful and helpful to me.

-The Lyme Warrior

Tuesday, January 31, 2017

On the edge

I can feel it... It is like living on the edge, and for me, I feel even more on the edge...edgy...edged? I don't know how to explain it other than I feel like I'm 12 and my parents have woken me up and told me we are going to Harry Potter world. They have loaded up the car and a half hour into the drive they yell: "Just Kidding!" And turned around laughing the whole drive home.

I feel this way because I have set a resolution to be in remission by the end of this year. I have lots of mini-goals to help me get to that point at the end of the year. I want this so bad. I have felt since about October that there has been a turning point in fighting Lyme, in which I am coiming out on top most of the time now. This is a big change from just 6 or 7 months ago. I have modern and natual medicines both working on my side, I have more energy to work out and be fit again. I have a better focus on keeping my diet healthy and strict, and because of that, I have thrown out the window all my cheat days. I used to justify cheat days a couple times a month. I would be found saying "Diet starts Monday again..." on a Thursday! I have come to the realization that I am not going to beat this if I don't stick to everything I have learned over the past 3+ years.

However, I feel on edge for the reason of wanting this disease to be gone, and still dealing with set backs. Where the set backs are minor colmpared to a year ago, I find myself getting more frustrated, because I can feel myself so close to remission, but then I have a Lyme flare up and I feel dissappointment set in.

For example, this weekend I woke up not feeling well. I was struggling to focus, my brain fog was bad, and I had a lot of chronic pain in my body again. It persisted through Sunday, so I walked home from church early at the urge of my awesome roommate who was concerned for me. When got to my apartment I realized I had forgotten my key (thanks brain fog). However, my friend who lives 2 doors down always has her apartment open. So I texted her and asked if I could take a nap on her bed. I woke up about an hour and a half later with no recollection of where I was or how I had gotten in the bed I was in. I didn't remember walking home, being locked out and ending up in a random bed, I was disoriented and delirious, confused and scared. I still don't remember that, and what is even more concerning is I used to have episodes like this, but not for about two years!

I have been frustrated, concerned and stressed about it for the past two days. I keep telling myself I should be getting better, and I keep asking myself, why is this happening again? There is no answer to the question, expect for BECAUSE I HAVE LYME DISEASE. I need to remember that Lyme is so fickle, and remember that flare ups are good. I have been mega-herxing again (click here to read about herxhimer reactions), which I have to remind myself it is good. It means I am getting better. However, at the same time, I feel crappy. The pain, headache, and extreme fatigue is wearing on me.

I have to remember to keep an open mindset about it. I need to allow myself to be ok with feeling sick, because it means I'm getting better. Where I want more than anything to get into remission I have to remember that it is still going to be a process. It isn't a gradual strait line, it is a roller coast of healing, and where the roller coaster is traveling up, there are still ups and downs in that roller coaster. This is my challenge for the new year: be ok with my progress towards remission!

So for this, I am on the edge. I am almost to remission, or symptom free, but it's not there. It's just at a distance. It might sound silly but I can almost taste remission, and for that, I am edgy about being on edge.

Sunday, December 18, 2016

I couldn't quit, because I won't quit

I just finished my first semester of taking full 14 credit classes since I have been diagnosed. I wasn't 100% sure I would be able to do it, plus work, but I did, and I passed! It took a couple days of sleeping off finals and letting it all sink in to actually feel proud of myself. And I am.

This semester I learned many things socially, educationally, spiritually, mentally and physically. Most of them about myself. This is one thing about my chronic illness--I learn so much about myself. The 2 biggest things I am still working on, but that I learned from this semester especially is, 1- being ok with myself, and where I am at. And 2- realizing I am stronger than I really think, and the reason behind why I am so strong.

It is hard to have a chronic illness and not compare yourself to others. I am guilty of that. It's always been said you should only compare yourself with you... the only problem with telling someone with a chronic illness they should only compare themselves to themselves is it entails them to remember who they used to be, what they used to be able to do, and makes them hate their situation even more.

For example, I love learning about things I am passionate about. That's why I love college, I learn about so many things I want to learn about. The hard thing is the effort it takes for me to learn something now, where as before Lyme Disease, is frustrating. Where I could have sat in a lecture and left understanding everything before, I now record a few of my classes and listen to the lectures over again sometimes multiple times, to make sure I understand and know the material. 80 percent of the time it's not music I'm listening to when I'm walking around with my headphones in. Studying for finals takes me twice as long as others. Then you hear the kids in your class obsessing over those .5 percentages they have between an A and an A-. I couldn't help but feel really crummy about my C when I hear someone telling me they could skip the final and pass with an 91 percent, but I know they will come everyday and still do the extra credit to finish the class with 101 percent. How can I not compare myself to that? It's not saying "I'm worse than them because my grades are worse." It's more like "Why am I putting in so much more effort and yet I'm 2% from a D?" At that point it is easy to throw in the towel, and give up. Right? When it takes so much more work, why try? 

I learned "why" this semester. When a very smart friend told me something nobody has ever told me before. It was one of those rough days when Lyme was winning everything. The depression was bad, and I was ready to ditch school and go home sick. I was ready to give up on everything. I. Was. Done. And I told her that, I told her I was tired of being strong. I didn't want to fight anymore. I wasn't the "Lyme Warrior" my blog said I was. On and on and on I went. 

Until she finally said, "ya know what Sadie, do it. Just give up! Go ahead." 

I was stunned. Nobody had  ever said that to me. I don't tell people when I feel like I'm losing with Lyme just to have them tell me I'm "strong" and "I can do it." That's not me, but she did the opposite of what I expected. Have you ever felt words hit you with so much force that you physically shrink backwards? Those words hit me with so hard it was like a punch in the gut, I felt myself sway back. Finally I answered through tears: "I can't."

"That's right, you can't because you won't. Because you are not a quitter!" She answered with even more force, and I knew she was right.

It took a huge break down to realize that I can't quit, I won't quit, and the reason is because I am strong. To realize how strong I really was I had to have someone give me the permission to give up. I realized just because I was tired of fighting didn't mean I was going to give up. 

I can't give up because I won't. I just won't. I won't let myself. I realized that I am tired, all the time I am tired. But I am not tired of being strong. I am still so grateful that someone saw it in me enough to boldly point it out. If I wouldn't have been granted permission to give up, I wouldn't have realized it in myself, and since then it has been freeing. 

The rest of the semester after I realized I can't give up because I won't, I still struggled, I still felt the sting when a guy was mad over his 3.1 percent deduction on a paper that gave him a B instead of an A. I still got down on myself when everyone was sharing their scores on a paper and knowing I could have done better than I did, if I didn't have this chronic illness bringing me (and my grades) down. I still slightly compare. 

It' s either a comparison between sick-me to them, or sick-me to non-sick-me, but I don't let it get me down. It's like ripping off a band aid too fast, I allow it to hurt and sting for a second, and then I attempt to move on and deal with me the best I can. Because I know I won't give up. So why linger on things that will just frustrate me to want to give up?

Learning to be ok with myself, my sick-self and learning just how strong I really am by realizing I can't quit because I won't has been two very important things for me in my confidence. I hope I can continue to be strong enough to overcome my comparisons I make towards myself and towards others. I have already realized I can't not, I just can't, but I do know that I can choose to be strong enough to not let them get to me anymore.

-The Lyme Warrior

Tuesday, December 13, 2016

Documentary on Lyme Disease

This semester I have been working with a group of people in a Video Productions class. They were in charge of making a short documentary, and they chose to do it on Lyme Disease, and they interviewed me for the documentary. And they did an amazing job! So click the link below to check it out.

Wednesday, November 16, 2016

Diet and Exercise: The Great Conundrum

Food glorious food!

"I can't eat that..."
"Because I have Lyme Disease..."

This is an excuse I feel like I use on the daily. It's part of life with Lyme. I have found, and others I have talked to with Lyme as well, that if you are not willing to change your diet, you will struggle to beat this disease. For the past two years I have changed my diet to work against Lyme, and it is a struggle. I had to work super hard at first, but now I feel like following a strict diet is one way I can have total control over my disease.

Food has always been a love of my life. In fact, it has been the love of my life. I wrote my mission president before my service for The Church of Jesus Christ of Latter-day Saints, and I told him I was in a relationship with food. I love food. Fast forward, however, and a year or so later I'm home early from my mission, with Lyme. For 6 months I relied only on prescriptions to help me. I had heard the suggestion to quit gluten and sugar within the first 2-3 months of my diagnosis. It wasn't until after the holidays and the opening of 2015 year that I decided to quit gluten and sugar.

I knew there was no way in heaven I could quit both at the same time, so I chose to quit the one I knew I could live without: sugar.

The sweets and candy's wasn't actually that hard, the hard thing was giving up my addiction to Diet Mountain Dew. I started drinking it on my mission to stay awake and survive the chronic fatigue that was controlling my life. I kept up the addiction after the mission and into my treatments because I was still very tired, I would fall asleep while driving 10 minutes to work. However, the inflammatories that are in gluten and sugar are what Lyme thrives on. So caffeine and sugar had to go. It took about 2 months, the first 2 weeks I was brutally cranky and tired, but after that I started to find I had more energy, I was still chronically exhausted, but I had more energy in that exhaustion. I had conquered the sugar cravings, and gluten was next.

Gluten is my favorite food, which I didn't realize until I had to give it up. It took about 6 months for me to quit. I feel like I sound like a smoker, or an alcoholic, but I seriously could have gone to a Gluten Anonymous meeting: "Hey I'm Sadie, and I'm addicted to gluten." I loved, and still love bread,  pastas, cereals, and basically anything with gluten.

So to give up this love of my life I would say it took about 6 months before I was finally completely off gluten. I would make it 4 or 5 days going strong and then the cravings would hit by the weekend and I would be craving pasta and pizza with a giant loaf of bread to go on the side. What did help was my mama quit gluten for her own personal health issues too, and that made things easier on both of us. Mostly because I think I had someone to complain to about how bad I missed eating my favorite cereals in the morning.

Once gluten was given up I stayed strong and off of both of those things, the doctors suggested to go off of dairy too, especially at the beginning of 2016 when my gal-bladder took a hit from all of the antibiotics I had been taking for the past year and a half. It actually wasn't htat hard to quit diary, I never drink milk, I think of it as cereal sauce, and I hadn't been eating cereal for about 9 months a the point of me quitting diary. I drink almond milk, and cook and use that instead. Sometimes I will really crave cheese, and that is hard, but dairy was the easiest of all the groups to give up.

Recently however, after almost 2 years of being off sugar, I have been put on the paleo diet. It is a diet of meats, veggies, nuts and berries. It limits almost all sugars and all grains. I used to eat rice and quinoa every day after I quit gluten. Now I can't eat any of those things. It was hard at first, but no where as near as hard as gluten.

After suffering through the paleo diet this summer, I was then put on the diet from hell. For about a month I could only eat 11 things: Greet yogurt, almonds, pecans, eggs, fish, organic grass fed beef, avocados, spinach, kale, berries, and broccoli. I was MISERABLE! I was hungry ALL THE TIME! I wasn't a big fan of the paleo diet, but being on the new diet, I just wanted to be back on paleo, I missed all my veggies and chicken! So I sucked it up, and did the diet. I was very cranky the first 2 weeks of the diet, trying to figure out how to stay full, eating at least every 2 hours. Now, after that diet, I feel like I can do paleo, and that is what I am back on again.

 The harder thing is trying to eat with friends. It is hard to go on dates and explain what I can or can't eat. Because I don't go out to eat, but that is a big thing to do on dates. I don't do that. So when I end up going on dates instead of saying "Yeah I can eat that piece of meat, wrapped in lettuce, oh and is the beef grass fed, or organic, because I can't have it if not." That is just tedious to have to deal with on a first date. So limiting my food makes my life a lot harder than it needs to be on dates.

Sometimes I cheat, and I regret it the next day. I notice a difference when I eat sugar, and I notice an even bigger difference when I eat gluten. I get brain fog and just can't think, or move. I'm slower mentally, and physically. And where ice cream or a bowl of noodles might be celestial to my tastebuds, the next day they are not!

Now those are the hard things about limiting my diet. I haven't gotten to the best parts! I feel better, I feel healthier. I feel like I can tangibly control something about my health that doesn't involve taking a substance that comes from a doctor or a health store. And I think that is the best part--being able to control something about my situation.

Exercise: Cheaper than therapy

I have talked about limiting your diet if you have Lyme, but there is more than just healthy eating that I can control and do to kick this disease into remission. Exercise. Working out. This is something that is almost like voodoo to someone with a chronic illness. Especially when they deal with chronic pain. The problem with Lyme is the Herxhimer Reactions (to read about those click here).

If you don't want to read all about it in a different post I guess I can recap it: So when you over work your body and it heats up you naturally kill off lots of bacteria. When you kill off too much of the bacteria too fast it is hard for your body to detoxify all the dead bacteria carcasses floating around in your body. So you get itches, aches, pains, and extreme fatigue.

I love playing, I love to swim, and I love sports, and hiking and working out. The most important thing with I have found is to know your limits. I know mine, but unfortunately I will push them past their limits. It is not always the best, in the moment the adrenaline might be fine, but I usually regret it after I finish whatever it was that I was doing.

It is a great conundrum to me because, for example, if I'm in a basketball game because I know how I should be able to play. I know how good I am, but with my body being infected with Lyme, I can't go as hard as I would like too. So I work harder, trying to play through the pain, and the cramping, stiff muscles and I get more frustrated and down on myself, I miss more shots because I get in my own head. Then after the game, even the next day, I feel the aftermath. As soon as I sit up in the morning my body just aches. I usually describe it as feeling like I got hit by a bus.

As good as exercise is for those who want to beat this disease, you have to exercise, even if it is just a walk. I remember when just getting up and showering was as if I had ran a marathon. You have to exercise.

All in all, it is hard to discipline yourself. If you struggle with Lyme and desperately want to feel in control of something in your life besides going to the pharmacy every other day, I would recommend changing your diet, educating yourself on a healthy life style, and pushing yourself to work out, but not to over do it.

-The Lyme Warrior.