It was a beautiful day today in Georgia. The weather was brisk, but sunny outside. My little guy had asked me to ride bikes with him around our property. I had received a beautiful mountain bike from my husband for Christmas. It has just sat in the garage since the day I received it. I had absolutely no energy to ride it, just looking at it made me tired. After almost 8 weeks of feeling as if I am living an out-of-body experience I decided to dust it off and give it a try. I will admit, I was a bit scared. I haven’t rode a bike in a million and a half years. I got going and it was fun. My son looked so ecstatic to see me outside and playing with him, I felt that feeling of warm satisfaction come over me. The warmth reminded me of something that my sister said in her workshop this past weekend. What are the 5 most beautiful things around you.
5 most beautiful things in that moment: 1: the sun is shining, 2: my son was laughing, 3: I had the wind in my hair as I sailed through the yard on my bike, 4: I was well enough to enjoy time playing with my little guy, 5: The sky was unbelievably blue without a cloud for a hundred miles.
I rode the bike for a few minutes, I ran down a hill that was bigger than I thought. I giggled as I slid my feet on the ground to balance and protect myself from crashing into a tree. I was rather amused at how silly I must look. I had one of those moments where you are laughing and your heart is racing, your body doesn’t know if you should be scared or yell yippee at the tops of your lungs.The energy was short-lived, the overwhelming fatigue I have settled in.I decided to go back inside and sit down.
I took the last 9 days as a break from the endless doctor appointments I have been through. I felt so defeated as I sat in the doctor’s office last Tuesday, my birthday, as the doctor said my MRI was normal. It wasn’t the MRI my regular doctor even wanted. So I walked away having given a small fortune to one doctor only to discover that I would need to seek a new Neurologist and start all over again.
The last week has given me a plenitude of time to think about my life, my body, and what it is that has taken over my physical self. I really want an answer. I really want to know what it is that isn’t working inside my skeleton. I really want to know why I don’t feel the way I think I ‘should’. That being said I also really want to not have anything wrong with me, especially things that could potentially rob me of the life I desire to have.
A few months back I was on Facebook and I came across the profile of a mom that I know from a moms group. She came up in my news feed. She was posting pictures of herself, she was bald in all of them. The next week she posted references to her surgery. I knew of course she had breast cancer. She is so young, she is my age, she just had a baby for crying out loud. It hits home for you when you see people who represent you, people in the same stage of life that you are, getting sick. I can’t handle the thought of all of this.
I am in limbo with my health. I have days of normalcy and days where I feel like a person who is very ill, not a pleasant feeling. I have no diagnosis. I have no explanation. I have no proof of illness. I have nothing except for the ever-growing lists of symptoms that have overtaken my body. When you don’t know what is ‘wrong’ with you it is scary, definitely scary. I don’t think the glitch in my body is fatal, but you get scared in your private moments
I am scared! What this mystery ‘thing’ is inside of me
When my son Blaise was 2 years old we saw every doctor under the sun. As he got heavier and heavier I knew something more was wrong with him, it was more than just low muscle tone. We saw cardiologists, pulmonologist, G.I. and so on. Finally at the rheumatologist office, a well respected man with horrible bed side manner, did we start to get closer to finding the root of it all. As this tall man with his white hair and hardened face looked at me, I felt small and uncomfortable, I wanted to shrink and disappear. He said to me, there was nothing wrong with my son, I fed him too much simply put he was JUST fat. I knew this wasn’t the case and I said no,no, no. After going back and forth we finally agreed my son hadn’t received the right genetic test for PWS. I told him order it, I forced him to order it and so he did. Twenty one days later I got the news that Blaise indeed had PWS. Had I just taken that doctor for his word that Blaise was just fat he would still be undiagnosed today. This is where I stand. I KNOW THAT SOMETHING IS NOT WORKING INSIDE MY BODY. I know I have to be an advocate for myself. I will find the right doctor, I will take all the tests I need, and I will make sure that I am not slipping through the cracks.
I am traveling to Kripalu to assist my sister next week for another retreat. I worry that I will have an attack while I am away. I worry that I won’t have the energy I need to be a support for her. I worry that I won’t experience this wonderful place the way I would have before I got sick. All that being said I am still going. I am taking a leap of faith. I have faith that I will not be sick while I am there, I will find the energy I need, and I will meditate and find some peace while on this trip.
At this stage all I can do is have faith. I have always been a firm believer that the Universe has big plans for me. I know that this is all just a roadblock for me. I promise to keep everybody informed of any new news on my health. Thanks to you all for sticking by me through all of this.