I’m alive

I can’t believe it’s been so long since I blogged. So much has happened in the past two years. I honestly don’t even know where to start.

Once upon a time, I was happy, healthy and had my dream job of teaching yoga; then it all crumbled. Sound like a good start?

The Spring of 2017 I finished my yoga training and opened Sunset Yoga Studio. Life was crazy busy but I was so happy to live my dream. I lived that dream for about a year but then my body went crazy. My hair was falling out, my gut was not happy with ANYTHING, I had joint and muscle pain that was so horrible there was days I could not walk. I literally could not walk. It was scary and would sometimes last for about an hour.

By the end of 2018 I knew I had to sell the yoga studio. This sent me into depression. I could feel all my dreams going down the toilet. There were days I didn’t want to get out of bed. Around this time my blood sugar starting going crazy. I would wake up in the mornings, it would be in the low 60’s. I would be so dizzy,… almost felt drunk, so I would stumble to the kitchen to get a glass of OJ. There were a few times it dropped down in the 50’s and I had to go to the ER. Of course, again the doctors had no clue what was going on.

Beginning of 2019 I started intermittent fasting because I read and my dr said that might help with my blood sugar issues because I didn’t want to be put on meds. Intermittent fasting went great for a few months but then in May of 2019 horrible things started to happen. My blood sugar was crazy low, the worst joint and muscle pain of my life and then one day I went to the bathroom and my urine was brown. My Husband rushed me to the ER and I was admitted to the hospital for three days. They honestly had no clue what was going on. My doctors at this point were doing everything humanly possible to help me.

Last night I went back over my online medical records and it showed I was at the ER 9 times in 2019 and I was admitted 7. From May to August of 2019 the doctors had me on antibiotics, steroids and pain meds. I gained almost 45 pounds and my health was so bad I couldn’t do yoga or go on my weekend hikes. I couldn’t even sit still long enough to meditate. The pain was so bad I would just scream out and beg God to take me home so I didn’t have to suffer. There were days my Mother would have to help me out of bed, then I would have to use her walker to get to the bathroom. Hell to be honest there was a few times I would sit on her walker and she would push me to the bathroom. I remember one night I was so depressed, in horrible pain and felt like I was a burden to my Mother, Husband, Children and Best Friend. I looked at the bottle of pain meds and thought about ending it all. Only by the Grace of God I didn’t.

The next day after thinking about taking my life, I was in bed watching a documentary on Netflix called Diagnosis. The first, and honestly the only episode I’ve watched so far, was about a young lady named Angel Parker. Halfway through the episode I told my Husband and Mother to come watch it with me. I had every one of her symptom. By the time we finished watching the show my mother ( who is a retired RN ) was on the phone with my Doctor.

Two days after watching the documentary my doctor talked my insurance into running a genetic test on me to see if I had CPT2. 6 weeks later I got the formal diagnosis. I have a VERY rare genetic disorder called Carnitine palmitoyltransferase II Deficiency AKA CPT2. I actually have adult onset CPT2. What that means is both of my parents are carriers and it lived dormant in my body until I activated by doing yoga 3 hours a day for months.

October 2019 when I got my formal diagnosis I reached out to Angel Parker. I thanked her and told her she helped to save my life. Living with CPT2 is not easy. We are just two of less than 400 people in the world so every time I find something new about CPT2 I send it her way.

Ok y’all that’s part of my life update. Tomorrow ( yessss tomorrow ) I’ll post again and talk about how much my life has changed after finding out I have CPT2. Oh yeah and if you don’t know what CPT2 is……… come back tomorrow.

    1 COMMENT

  • Risa February 9, 2020 Reply

    *hugs* looks to me like you have a good start here to help you through all this hell hun! I knew much of this due to all our talks nightly. I’m always here for you hun, any time Day/Night! Love ya Cookie!!

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