Another Year of Lyme

Another Year of Lyme

2014 is coming to an end. This year has had it’s ups and downs. Some of the moments, like being able to go to the grocery store, walking the beach, putting my wheelchair away in our second bedroom for storage, and visiting some of the museums with Dave have been my highlights, enough to put tears in my eyes for making huge strides towards getting well.

Right now I am beyond discouraged, as I keep on slipping further downhill, and I am hoping I get some answers soon, and that I will be going back upward in 2015, and reach many of my goals that I have had for this year that I have not yet reached.

I had been doing my IVs for much of this year, and found myself to be making progress everyday. The fog had begun to be lifted a bit, and I even accomplished a full six weeks of physical therapy.

The turning point was when I transitioned to orals. I hit a big Babesia relapse, and things have never been the same. My body is either numb or aches, my head is always foggy and I feel like I am in a daze, the stuttering and tics are making a comeback as well as my seizures, and I am always really dizzy if I stand for too long. The chest pains, the air hunger, it never seems to end.

It has been a battle, dealing with depression, from life in general, to my medications and the bugs stirring and causing my brain to swell. After these two years, I was really believing that there would be a miracle, and I would have my life back to what it once was. It is okay though, as I have done my best to keep my spirits run high, and I have NEVER given up. And I won’t, because I know my day will come, and positivity is one of the greatest medicines.

We are in the middle of trying to find out if I have endometriosis. After four gynecologists, I at least feel like I am going in the right direction to finally get a proper diagnosis. My hormones are out of whack, and that just might be a part of the puzzle of why I am sick. Baby steps I suppose. This disease is a very very long marathon. I was certainly hoping for it being a short jog… like to my mailbox. I could have never imagined what a nightmare this disease and all its co infections could truly be.

Here is my little photo timeline summary of this year’s journey:

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One of my first appointments with Dr J of the year.
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No matter what, we can still have fun. 🙂 Dave didn’t want to smile at 5 in the morning though. Haha. I can’t say I blame him.
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B-12 shots collection memorabilia.
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Vienna sausage ACA toes. At least this has gotten better throughout my treatment process.
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Unclogging the Powerline with my favorite nurse, Helen.
Lyme rashes, although faint they still pop up from time to time. 1514160_10152042040297404_1625095241_n

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Hanging out with my Lisa Frank pole for the evening.

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Time to take out the trash! I am so glad to have all this stuff out of my living room!

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A Flagyl day at the hospital. Yuck! I look like I need a nap. And a hair wash. Judgement free zone here though boys and girls!

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Y
up. That is a very messy tegaderm. I had to have my line removed two months earlier than planned. Rotting skin and an IV line is never a good mix. There are so many things I hated about having a line, but I am beginning to miss it in many ways. Stomach issues, detox, relapse. Maybe I need to go back on them in the future to turn things back around..

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The last infusion! Weeeee!

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I was so incredibly happy at this moment. I think my biggest excitement was knowing I would be able to take a real SHOWER!

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Dave and I’s adventure to the Natural Museum of History.

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Just because I got my line out does not mean I get it easy by all means. This is my second round of the day.

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Okay… maybe not so Lyme related, but we brought home Cooper! How can you not resist that squishy face?

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Our walk on the beach. We walked 5 miles that day. That is amazing, considering 6 months before I needed a wheelchair to navigate through the airport.

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Hanging at the hospital for an ultrasound of my leg for possible DVT. Thank goodness it was not, but superficial thrombophlebitis.

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One day I hope this will all be different. There will be reliable testing ,doctors will all be on the same page, and most of all there will be an easy fix. Someday.

There are still many rough days as you can tell by my small video blog. Seeing is believing, so I love share even though I know I look bad.

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A little Bell’s-ish issue going on. I tested negative for Myesthenia Gravis, so the bugs are clearly having a field day in this picture.

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Dave and I still made it out for our favorite holiday. 🙂 It was the one and only time to go “out” this entire year. I had a lot of fun, and was happy to see familiar faces that I hadn’t seen in well.. a year!

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Christmas 2014.

I was diagnosed in 2012, and we are now beginning 2015. Here is my first year’s journey, and it’s struggles from the very beginning of my treatment (see, you don’t have to read every entry if you haven’t been following along! You should though.. I am awesome. ) : https://kimmiecakeskickslyme.wordpress.com/2014/01/01/a-year-of-lyme/

I wish the best to all of you, wishing you a happy and HEALTHY 2015. ❤

15 thoughts on “Another Year of Lyme

  1. Thanks for your honest commentary about your journey, I wish for improvements in your health for 2015. Thanks for sharing your story, 🙂

  2. Happy New Years my friend! This is going to be OUR year. We are going to start moving forward and not looking back. We are going to find answers to the questions we have. Keep fighting my friend we will beat this an become a new, better version of us. Xoxox

  3. Hola kimmie! I hace a question for you….I was totally puzzled when I saw you were diagnosed in 2012!!!! Have you been on treatment since then or just since 2014? i have been in treatment myself since august 2012 and I was considering the states ( i was the one spamming your mail lately) because I thought it would be better and quicker…thanks,thanks a lot! All the best for 2015!

    • I have been diagnosed and treating since September 2012. I sure thought it would be better and quicker! lol When I first heard “Lyme”, I was like “oh thank god it’s only Lyme!” I was very wrong on that one! Hang in there! There are some good LLMDs here if you are out of the country, but I am sure there are many abroad (I am unfamiliar). All the best for 2015 for sure!

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