I had a really triumphant day Tuesday that turned into one of the worst days of my life with gastroparesis. I had wanted to share some pictures of me celebrating (I rode a carousel) being able to get my driver’s permit.
But Ive been feeling so shitty, literally, that I havent thought much about anything else, much less putting them to paper.
I will say this : love, real love, is UNDERrated. Real love is when you can look at a man and tell him you just shit yourself in bed and he is completely unphased and says “Aww baby. Im sorry you feel ao bad. I love you.”
When a man tells you he loves you in THAT moment or he sees you looking like this
AND thinks you’re the most beautiful woman in the world. His woman. That’s love ya’ll. Real love.
Love at its core is this: That in sickness and in health, with shit in your pants and ugly on your face, it finds the best in you. It knows the song in your heart and singd it back to you.
I dont give him nearly enough credit for all the ways he really loves me.
I am sick and tired of doctors associating and dismissing everything if you are a patient who is overweight, to you being overweight.
Yes, I am overweight by medical standards. I know that. I know how much I weigh, I know my BMI. But I also know that I eat well and I exercise. So, while my weight may not fit into your box, if you actually looked at the food and exercise I log, instead of down your nose at me, you might discover something else. You know, something you might discover if you actually PRACTICE medicine. What if fat is a symptom and not the cause?
I have PCOS. I have autoimmune antibodies. Antibodies attacking my optic nerve. Antibodies attacking my connective tissue, scleroderma. Scleroderma has caused me to have gastroparesis. Gastroparesis makes me eat a low residue diet. Low fiber.
So when Im suffering from excruciating stomach pain and you look at me and assume I need to eat better, eat more fiber, that’s actually the WORST thing I could do. That would cause an obstruction. It could kill me. I know it goes against everything you’ve been taught about how the body works and what we should eat, but guess what? Its how MY body works. Try actually living against all the things you’ve been taught about eating.
All bodies are different and should be treated as such. I know you’re taught to look for horses and not zebras, but zebras exist. A zebra is never going to be a fucking horse no matter how much you try to make it one.
Received an email from my new neurologist at the Cleveland Clinic today regarding testing results. There is a “significant” issue with my sympathetic nervous system. I need more testing. Blood, imaging, biopsy. The wind had already been taken out of my sails because I’m currently dealing with a flare up with my gastroparesis. This lovely app on my phone indicates that my “quality of life” has dropped two points in the past month. This is an indication that I need to return to a liquid/mush diet. Perfect timing since I’m hosting extended family for Christmas dinner (insert heavy sarcasm)
I really try to put on the brave face, push forward and not let the disease rule. Today, I just need to collect myself. Back on the grind tomorrow….
Last June (2013) I became very ill.
Between June to September I was sick on my stomach EVERYDAY. Nothing I ate stated down or in for very long and I was constantly nauseous. CONSTANTLY. Let’s stop to think back on the worst stomach flu or maybe food poisoning you’d ever experienced. Now try to appreciate what it would feel like to be that sick Every. Single. Day.
I was exhausted all the time, even when sleeping upwards of 16 hours a day. My hair started to break off near the root, leaving me with very itchy patches of stubble here and there on my scalp. Oh, and I also started dropping weight like crazy.
Being a female, I’ve been dieting since I was ten years old. I’ve done fad diets like Atkins, South Beach, 30/15, cabbage soup, I’ve done the calories in vs. calories out, I’ve lost 80pounds and gained it back. I beat my head into the wall trying to figure out why no matter how much I worked out and how little I ate or carbs v. protein, after having kids, the weight just wouldn’t go away. I figured out through testing that it was due to polycystic ovary syndrome and I guess that made it ok in my mind that the struggle existed, well at least it made sense. I promised to keep up the exercise in order to be healthy. I stopped being worried about the number on the scale. So, go figure that once I arrived at that point, my health went in the shitter.
For the first time in my life I was dropping weight without trying. People started to notice and tell me how awesome it was but I couldn’t agree. Having put health over scale, I knew there was nothing awesome going on. It was bad and I was scared. This tells you how absolutely shallow people can be. I am embarrassed that I had ever fallen into the thought pattern myself. Seriously, people, there are WAY bigger things going on in life and world than our weight. It’s superficial.
Anyway, I ended up having to go see a gastrointestinal specialist. I found out that I had this disorder called gastroparesis which is quite literally what it sounds like paralysis of the GI tract. The doctor said that he had additional concerns (because already losing most of your vision and having a stomach that doesn’t work wasn’t enough) because he believed that it may be autoimmune in nature.
Then I was sent to see a rheumatologist at the Cleveland Clinic. The way she reviewed my paperwork and gave me the once over made me uneasy. It was like a stereotypical therapist on TV who says “mmhmm” and makes notes after everything you say and you’re sure something you’ve said has revealed some deep down personality you know nothing about. I felt very vulnerable. The hospital gown didn’t help.
She runs blood work and says she will call me with the results.
Turns out…I have an autoimmune disease called scleroderma. I won’t go into the details because frankly they tend to send me into some sort of post traumatic stress. Basically it means that your body attacks the tissue in your body, producing too much collagen causing the tissue to harden. Not just your skin, but any tissue, like the tissue that is a part of your vital organs. Since It seems that I already have internal involvement….well, it is likely I will develop “complications”.
And that’s the explanation for my hiatus here. Now that it’s all out on of the table I will try to carry on.