September 7, 2012 – 3 Years

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Well, the whole “blue skies” feeling from the day before ran out. I was running on negative spoons. One of my biggest downfalls is that when I have better moments, instead of just enjoying the moment, I feel like I need to do anything and everything possible. Can you really blame me though? Having a better day is exciting. It brings out so much positivity and hope. It makes me so optimistic that there are going to be more and more days like this to come.

I was kind of bummed the beginning of this week. I have been using my bike a lot so my legs have hurt, and have been trying to detox as much as I can. I even popped a Diflucan the other day to try to get read of as much Candida lurking in me.

After taking a Diflucan, I feel pretty yucky the next day. You can indeed herx from yeast die-off, and I think that was going on. I was blaming it on my new use of essential oils, but that really doesn’t make any sense. It had to be the die-off. I had to “mind over matter” and push through the day, as it was extremely busy in the office, and I really needed to do some cleaning. A clean house is a happy house. My house was not so happy.

It was a long nap day, and Dave has been letting me sleep. He says I am completely out, and he doesn’t want to ruin it. That leaves me with a later bedtime, and I didn’t sleep very well that night. It was a full moon recently, and although I never really knew if the full moon and Lyme link was really true or not, but I seem to notice a difference.

My phone had officially shit the bed, and I needed to try to get a new one. It has been nothing but a pain in the ass, my Dad making phone calls, since the phone is under both of our names (according to the idiot our first trip mine wasn’t, even if you log into the account it says right on the screen, “WELCOME, KIM!”. Roar. Even trying to handle something as simple as getting a phone is enough to stress you out, flair your symptoms. That day I was tired, having hot flashes, and felt like a fat man was sitting on my chest.

Okay funny story… Dave had a Lyme rage moment at the store. As we were going inside, he was telling me to behave myself in the store. He would kill me if he knew I told the story.. but I am going to anyway.

As soon as we got into the store, he told the man off that was really rude to me, telling him that we would wait for someone else to help us, we didn’t care if he wasn’t busy. That he didn’t want to help us the week before and was a jerk… Yeah.

But the thing was, he yelled at the wrong guy. Dave whispered to me while we were sitting at the counter cashing out and getting my number transferred, “I don’t think that was the right guy I yelled at, I think it was the one over there.” LOL After really thinking about it, he was right. It was hard to not crack up laughing. Oh well…… it happens. I just think it was funny because he gave me warning to behave myself. And for once, he was the mean one.

I almost thought about hitting my heart monitor button today. It was one of those days that I seemed to run into people and they wanted to chit chat. I kept looking for anything possible to lean against, and began to be a sweaty hot mess. At least it was a dub day at work. A very dub day. I sat out in the sun and relaxed a bit with the dogs, and now I am taking it easy until it is time to cook dinner.

September 7th will be my 3rd anniversary of beginning this journey. Three very long years.

This is all what I have remembered to keep, and just imagine if I kept over 15 months of IV bags! Not only would I not have any room, my house would be rather stinky.
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I won’t bore you sharing my first and second years. You can read them. You should read them. Just saying. 🙂

https://kimmiecakeskickslyme.wordpress.com/2013/09/07/september-7th-2012-one-year/

https://kimmiecakeskickslyme.wordpress.com/2014/09/07/september-7th-2012-two-years/

This year, although I try to remain as optimistic as possible, has not been anything I had hoped for. If anything, I am worse than where I was a year ago.  Although I am still better than the day I wobbled into Dr J’s office, ticking, rocking, and in complete outer space, I have gone from walking five miles on the beach when I first finished my IV treatments, to having to be babysat a lot of the time. Dave wouldn’t even try to take me on a Walmart trip anymore. Hell, he has even had to put me on a pallet at Lowe’s to wheel me out.

I have dealt with cruel doctors, have unfortunately made little to no progress, and worst of all, my mind has played terrible games with me. I never thought my mind could go in such dark places, and it happened. I am sad that I have even had may issues, the little monsters in my head, telling me over and over that I am nothing, no one would miss me, just get it over with.

Thoughts of “how I would do it”. These monsters kept telling me these things over and over again.  The voices would never stop. The only thing that I could do was sleep to make them go away.

I have slept more than I could have imagined. I am so physically exhausted, I am mentally exhausted. This all probably sounds like a Debbie Downer to many of you readers , but I am still positive that I have so much more room for improvement. And I will get there. I just know it.

In the last month or two, I saw my electrophysiologist, and I have not had to press my heart button in nearly a month. That is one of the  biggest reasons why I think that this year will be a much better one. I think that this year I will progress a lot.

I have even had a few parts of the day having, as Dr J calls it, “moments of blue skies”. I have moments I have been a busy bee, cleaning, work, and Dave leaving half the grocery list up to me to get on my way home by myself. There was part of one afternoon, that I know made Dave happy. So happy. I use to be his partner in crime on his wheeling trips, and although not far, I went out with him for a ride.

I know that out of everything that has happened in the past three years, not being able to do these things with him has probably hurt him the most. It was never taking care of me, pushing me in my chair, bathing and helping me get my pajamas on for bed, bringing me to appointments, helping more around the house, or being my protector from mean people, or my advocate . It was losing me.

Dave asked me randomly last night, “Would you do it all again?. That is a powerful question. A loaded question. Once you start this journey with Lyme treatment, there really is no turning back. Even now, I don’t really know how I would answer that.

On September 12th, 2012, I walked into Dr S’s office with a bum left leg, and my “Fibromyalgia and CFS” had never truly went away, it was just much better controlled with diet and exercise, I had a much stronger immune system, and honestly I think I was just so busy that I didn’t have the chance to feel anything. I was a “go go go!” sort of person.

I guess the best way to answer that is yes and no. Some people are lucky, and their symptoms will come and go. I think somehow if I knew that things would have gotten better, my leg a little more useful, and still suffer from the same symptoms I had learned to deal with for years, I probably would have said, “no”. People even in remission have little flairs here and there. What if I was one of them? One of those people that was just having a flair? Maybe I could have been one of those people.

But.. what if things got even worse for me? That this path would be even more of a challenge? That I would be sitting here three years later, even sicker than I once was, which seems to be hard to even want to imagine, with all of these things attacking me for a few extra years.

Like I had mentioned earlier, it is a very loaded question. Knowing what you know now? Would you do it all again???

P.S. Kimmiecakes recently hit over 250,000 views! I hope that by sharing my story I am educating others, being the best advocate I can be, and most of all, helping those of you living in this nightmare feel a little less alone. I just wanted to give a big THANK YOU for all your love, kindness, and support!

Friday, November 19th, 2004

This day means more to me than my wedding anniversary. It is the day that I MADE… yes MADE my now husband, Dave ask me out.

I say this day was more important than our wedding day for several reasons. One was that without this Friday evening in 2004, there would be no wedding day. There would be no “us”. I sometimes wonder what my life would have been like if I hadn’t met Dave and had a different path in life, and then I can’t even begin to imagine what life would be like without him.

This day means more because I did not have a big wedding, nor did I have the chance to have everyone I love there for many personal reasons.

I keep saying that we will have a party (next month will be our 6 year wedding anniversary so I might be a little behind), in hopes that maybe we can finally get a chance to celebrate ourselves, and hopefully also celebrate good health.

We sat in his Neon at the municipal parking lot in our tiny town that was our groups “hang out spot”. I should say, his “COOL” Neon, with turbo boost and a DVD player. Pretty high tech stuff for 2004! 😉

I was scared. I was a 17 years old high school senior, and he was 21, all done his schooling. Even though he wasn’t all that different in age, it seemed like a world of a difference. He had started experiencing the world and I had not even begun mine.

All I knew from middle school until my senior year of high school was one relationship, my high school sweetheart, and it ended not too far from the time I started seeing Dave.

With Dave, I didn’t know what a relationship would be like. I was young. I only had my high school sweetheart to go by. What was I suppose to do? What was I suppose to act like? I wasn’t too sure. But with Dave, it seemed like I could be “me”.  He kissed me the last time I saw him so I needed to know what I was to him. I wanted to take that chance. I wanted to be his girlfriend.

And so he  asked me out. And I said yes, of course, because I made him. “What are we? Do you want to be my boyfriend? You have to ask me out, that is how it works!” :). I am rather bossy if you know me in person. My way or the highway. I am ALWAYS right. Anywho, on that evening, we became “us”.

It was a perfect evening, hanging out in my little town’s municipal parking lot. Simple yet perfect. After becoming his official girlfriend, I had to make it home for my 10 p.m. curfew, and on the way home I could not stop smiling. I felt the butterflies. 🙂 🙂

We meshed very well and began our relationship with a friendship, built our trust, and then eventually fell in love.

I am not one of those “everything happen’s for a reason” sort of people, since I believe that everyone can create their own destiny by their own actions, at least to a certain extent, but I somehow believe there was a reason that we met.

And today, I know I couldn’t have picked a better guy. There is just no way.

When my life changed forever in September 2012, he stayed by my side. Always helping and handling everything while I had my seizures. He never treated me differently when I developed my verbal and physical tics, stuttering, and my body rocking. He helped me when I couldn’t even bathe myself. Pushed me around in my wheelchair.

He took over all the household duties. He takes time off of work so I can see one of the world’s leading Lyme specialists in DC. He has seen me at my very worst, sometimes terrified because he didn’t know how to help me or what to do. He has been my voice and advocate throughout this process.

All of this without an ounce of resentment. Asking what he can do to make it better.  Living this experience with me all with love.

Friday, November 19th, 2004, changed my life for the better. Being sick has surely tested us, but we are strong, and it did not break us. And it will not break us. Happy REAL anniversary, babe. 😉

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