Wednesday, December 27, 2017

Looking Forward, Glancing Back

Today, December 27th, 2017 marks 4 years since I got Lyme Disease. 

This post is about how far I have come since then.

The ability to see how far we have coming in any journey is probably one of the greatest gifts ever given to anyone on the face of the earth. That very ability, to not blind ones self to their own past, is something that some human struggle to grasp. For myself, that ability comes and goes, sometimes I can look back on certain days so clearly, other times all I see is everything in front of me and nothing behind. Sometimes the things I can look back on and see the most clearly are things I really don't want to see at all. However, I am at a point in my life, in my battle against Lyme Disease where I have to be able to look back. I have to be able to see how far I have come.

I told myself last year at this time that I would be in remission. I said #remission2k17 and I believed with every fiber in my being that I would make it to remission this year. I am still on just as many antibiotics as I was last year. I am still seeing a naturopath and my lyme doctor, who still doesn't hesitate to order 15 vials worth of blood work from me. I am not in remission. I started to realize I wasn't going to get into remission by the end of the year and started to get sloppy with things that I had worked so hard on the whole year. I started cheating on my diet, I started giving up on my strict bed time. I started to convince myself that this was as good as I am going to get. I got hooked on caffeine again. I just started all around slacking. The resilience that I had kept so strong through about August of 2017 left faster than a couple of fiber one bars eaten for breakfast.

I saw I wasn't going to be completely healed and assumed this would be my life--feeling alright most days, with only a few crappy days. This is as good as it get... That's what I have started to convince myself. I was a little frustrated with how I was feeling. I wasn't getting better... or was I?

The crazy symptoms I have are gone. I don't struggle with PTSD like I did before. I don't have any self harm thoughts, and I don't have mood swings. I don't fall asleep driving in the car 10 minutes to work. I don't feel like dizzy when I stand up, and I don't forget to wear a bra in the mornings anymore before I leave the house. I don't run on 2 hours of sleep's more like 4-5. I don't pass out or have seizures anymore.

These are huge mile stones, but for me those are big things to over come. I notice when those things are gone. I notice that I am not falling asleep anymore at the wheel. I notice that I don't need to take naps. I notice I don't wake up having awful flashbacks. These are all great things I have overcome with so much help of my doctors and my family... But I still have a ways to go. And the other things are harder to notice, because they are little things.

I keep getting sinus infections because of a biotin from Lyme Disease and mold. I have crappy skin, and bad acne because my body is trying to detox it's self from all the Lyme Disease I have killed off. I hit a wall every day at 3 where I don't feel like doing anything. I don't need a nap, I just don't have energy or motivation to do anything at that point in the day.

These are all things that are harder to pin point and treat as symptoms of Lyme Disease, because what if these are just side effects of the antibiotics? What if this is just me? and my biggest fear: What if this is just me now, for the rest of my life? What if the Lyme is taken care of pretty much, and the rest is just what it has left in damages? This might be a little dramatic in thinking, but that is what I wonder sometimes.

I do have one huge milestone that I have reached in the last 4 months of the year, which I didn't realize until towards the end of November. Since September I have not had a since day of depression. I didn't not have a wave of it hit me on a single day. Every one has their hard, and sad days. But I didn't have anything like I used to have. I made it through my whole semester of college without having a bout of depression. That is an amazing feat. That is something I am really excited about, and it took me a while to realize I wasn't feeling depressed. Part of it was I was so busy, and the other part was because I was still looking forward at everything I still had to get better from. I wasn't taking the time to notice the improvements I had already had. I wasn't taking the time to look back at where I was compared to now. I had forgotten for a second, where I once was.
My battered, old Medical ID

Now, don't get me wrong, I never want to go back to there. But I don't ever want to forget how sick I really was. Because I am who I am today because of how sick I really was. And I like who I am now.

In realizing that I did not meet my goal of getting into remission, yet, also realizing how far I made it this year, I am treating myself to a milestone of my own. In July 2016 I had a seizure. I was really embarrassed about it, and it was pretty scary, and so I never wrote about it. It was while I was up at school for a summer semester, but I was wearing a medical ID bracelet and that helped my roommates when the ambulance had to come get me. I will write more about this day some other time, but I have kinda had that medical ID as a life line before, and since that seizure.

I have started to break myself of my consistency of wearing it. And since tomorrow marks the 4 year anniversary of me getting bit by Dick the Tick, I have decided that I will not be wearing my medical ID anymore. I may not be in remission yet, but I am well enough that I don't need to wear it anymore. For me, that feels like a great weight taken off of me, to help me move forward.

-The Lyme Warrior

Sunday, September 3, 2017

3 years since being diagnosed....

About a week ago, I was listening to an 80's playlist on Spotify, and Bryan Adams feel good song, "Summer of '69" came on. I was listening to it, and I started thinking about this summer for me. I really feel like this summer, the "Summer of '17", has been my "Summer of '69."

I had a lot of plans at the beginning of summer, I really wanted to do things that made me feel good about my progress with Lyme, but to do that, I needed to feel good with Lyme. So, I decided I was really going to listen to my body, and what it was saying. I had to put my body over anything else this summer, and that meant pushing it.

I was already feeling I was getting better in April when I came home from school, but if you read my previous post (click here to read it), I didn't really know just how good I really was feeling. I didn't know my limits. This summer became a time to test my limits, and push them.

My first real push was to attempt to work out more this summer. I had taken a weight lifting class in school, but I wanted to really implement it, and feel better about my endurance. I wanted to know I could work out, and not have it leave me spending a month in bed. I signed up for Crossfit. The first couple times I went, I almost started crying, but I felt so good after, and even though I was very sore after my first couple workouts, I was still able to keep up with the daily grind of life. This helped my confidence, in what I was able to do for the summer, soar.

My second test began in the middle of May, I went hiking in Southern Utah, in a place called Kanarraville Falls. Two summers prior, I couldn't even make it halfway up the hike, and it was about a week recovery after going because I was in so much pain and so exhausted. This time I went, we had to stop and turn around after 2 hours, because our group had to head back at a certain time, and to my utter surprise, I wanted to keep going. I felt like I could have hiked for 5 more hours! I was at the front of the group, and helping others wade through the deep waters and skinny narrows, I had so much fun. This was my first time realized, and testing the waters (literally and figuratively), in what I could and couldn't do. I went right back to work the Monday after that, with no problems, and feeling great.

My third test, and the one I was dreading the most at the beginning of summer was work. I started off the summer not looking forward to going back to working at the Daycare center. It is fun, the summer is full of actives, but it is very exhausting, and I have worked there almost every summer since I was 16. It makes for a long summer. This summer I was very worried, because we were switching up how we did the program in some major ways. I will admit that I had many doubts about working this summer. However, as time went on, I began to realize that the changes to the summer program at work made it easier on me. It was hard to change, but easy to do. The changes implemented made it so I was able to get closer to the kids, and have more fun. I didn't think I would be able to work out after work, because I would be too worn out from work. Instead, I found myself not wanting to leave work, not because I didn't want to work out, but because I was having too much fun. There were many times I was told to go on my break, and I didn't want to because I was in the middle of a game with the kids.

Now that the summer program has ended, I sit back and look at all the pictures that I took with them, and I think, man I wasted way too much time stressing and worrying about how hard it was going to be to go from a part time tutoring job in the library on campus, to a full time entertainer/caregiver to 25 (give or take a few) kids... Now my concerns have done a 180! How am I going to go back to a more professional job, after all of the fun I have had this summer?

Of course there have been ups and downs this summer, but for the first time since being diagnosed I am happy to report that this summer has been more up's than downs! I would venture to say double the ups than downs. Today, September 3rd, is the 3 year anniversary of my diagnosis. If you would have told me a year ago I would be feeling this good, I would have thought I was being filled with false hope, not because I didn't hope in it for myself, but because it sounded too good to be true. I have had a sort of "bucket list this summer" and I am happy to report that the final thing on my list is going to be crossed off this week, hiking Table Rock in the Grand Tetons in Wyoming (don't worry, I'll post pics of that hike on my instagram).

As I look at this picture (now a traditional picture) of all my boxes I have collected of medicine, I realize just how far I have come because of all these little bottles. I have had a goal of "Remission 2k17" (click here to read) and if I don't get there within the next 3 months I do know that I can keep working to get there, and that I am living a nearly full life now. I am feeling good nearly every day, this summer was an example of how far I was able to push myself, and keep going, and now I can actually feel the results from the summer, and from all of these medicines and I am for the first time actually excited. I am excited to keep going and healing.

-The Lyme Warrior

Sunday, July 30, 2017

The Lows and Highs of Recovery

I work with kids at a daycare center in the summers. We go on field trips, and do lots of fun things. A week ago I went to a theme park with lots of roller coasters with the kids. I was in a group of kids who had never been, but wanted to ride the rides that go upside down, cork screw, have height limits, and are really big thriller rides. I was in line with a particular 9 year old girl who told me she was scared to go on the first roller coaster of the day, one called, "Colossus," which went upside down twice. I asked her where she felt scared, she said it was in her stomach, that she had butterflies, but she wanted to go, she was excited. She then asked me why, in her head she was excited, but her stomach was making her feel nervous and scared. I didn't have an answer for this girl, but I had a word to describe what she was feeling, I told her the word for her emotion was anxiety, and that I felt it too. She looked up at me, in line, and asked why I was scared, she knew I had been on this ride before.

I didn't quite know how to explain to her that the last time I had been to that theme park I didn't have Lyme disease, I didn't have depression and crippling anxiety. I didn't know how to help her understand that in going on these big rides, was a big step in my personal healing process. If I was too sick to ride these, my own personal view of my healing and goal towards remission, would be set back farther than I anticipated. I didn't have the words to explain, or to help her understand. I just told her that sometimes my head and gut try to tease me and make me think I'm afraid, even though I'm actually excited for something new. I told her she could give into the part that was scared and get out of line and watch, or she could be brave, and fight it, and see how much fun it really was. I don't think she really got what I was saying, or even remembered the conversation but she did stay in the line, and the next thing both of us knew we were buckled in and on our gradual ascent up to the top of the roller coaster.

She loved the ride, and went on it two more times that day. I went on it one more time. I went half the day on crazy rides, and the second half of the day I just followed the kids around to where they wanted to ride and watched.

In accomplishing this milestone, of surviving (literally) this theme park, with zero setbacks the day after, I have come to see some knew things:

At the beginning of the year I set a goal to be in remission by the end of this year. Whether this happens by the end of 2017 or not, I am getting better. I feel so much better, I am doing things I couldn't do even 6 months ago. Physically, I feel so good, mentally... I am happier, but there are certain levels of anxiety that have come up that even I haven't faced yet, and it's a whole new ball game.

When I first was diagnosed, and began treatment, it was like 100-0 really quick, in knowing what I could and couldn't do. Mentally it was hard to not look back and think, I just want to feel good enough to do easy things, like go to the store, or to church; let alone, work and go to school, those were the highest goals. And in the healing process, I had to learn that I had to say no to certain things because if I stayed up too late, or went on that big hike, or went and did something to exhaust my strength, I couldn't afford the next 2 days of chronic pain or sickness off, in bed.

I became really good at knowing my limits, so good in fact, that now that I am healing, my body isn't telling me I can't do things anymore, but my mind is still stuck in the warning stages. Like the 9 year old in line to ride her first ever roller coaster feeling one half excited but another half scared, I am that way all the time.

I have anxiety over going and doing things, and staying out late now with friends, because a year ago those things would have put me over the edge. I have anxiety before working out all the time because 6 months ago, and when I first started nearly 4 months ago, I was being set back a day or so because of pain. But every time I do these things now, I am so surprised, and grateful. I am doing so many things that I haven't been able to do in years, but doing them is an effort almost more mentally than physically, because my brain is still in ultra healing mode.

I am afraid to get sick again, so much so, that I want to back out of things that I don't think I can physically do, out of fear of being beaten to a pulp again by Lyme, because that has been the ordeal for the past 3+ years. I have to learn how to work past the anxiety. Like I had to learn in the beginning of this disease, how to be sick, and let others help me, and all those really hard things. I now have to learn how to be healthy, and right now it's been proving a challenge, because every big thing I do I have near crippling anxiety telling me "What if this is the wall you are going to hit?" or, "What if this is the final tipping point?"

I can't live my life not doing anything out of fear of Lyme Disease, if I did, the disease could be gone, but I would still be living like I was sick, not doing anything, but without the disease. It would still be winning, even when it wasn't ravaging my body. I can't and won't let it win me that way. It has been hard to deal with, but every time I do something to prove my anxiety wrong I am both surprised and grateful that I am able to experience this high--of recovery.

-The Lyme Warrior

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.