gastrointestional disease

Official Diagnosis: You’re on My Last Nerve

If you have followed me over the past few years or know me in real life you are aware of my Phantom GI Issues. For five years these episodes have controlled my life. There were days when I could not get out of bed. There were days when I had to leave work early because I couldn’t stop throwing up. There were months where I lived on smoothies and liquid foods. There were dates with the hubby that had to be cut short because I got sick and would pass out. Then there was the time I had an attack at the OBGYN office; the hubs had to pick me up and I had to drink the orange sugar drink they give pregnant ladies. I lived in fear (and sometimes embarrassment) of knowing that any moment I could have something coming out of somewhere.

 

Over the years I have spent more time in doctor’s offices then I’d like to admit. I have lost my temper and swore off doctors all together. I have had ingested more radioactive tracers than a “healthy” person needs to. If I had a dollar for every time I heard “you’re too young to be here” or “too young to be having these issues” I’d have a brand new car. I had tests done that costs more than a new car done that came back with negative results. I have tried medicine, food, supplementation, and just living to get this under control. I had to listen over and over again to people telling me that I need to ingest essential oils and I’d be cured. That I don’t do enough yoga or meditation. These antidotes spun around me like a record on a record player.

 

I got to a point where I thought they were never going to figure out what’s wrong with me. It wasn’t my gallbladder, my hiatal hernia had been long cured, it wasn’t my small intestine  and it’s function, my colon, or more food allergies. While I almost felt like giving up a part of me kept fighting on. I knew eventually something would have to give and I would find out what was causing my distress. Even though it seemed like no one was listening to me that something was wrong (it started to have that girl who cried wolf vibe) I knew internally something was off. I just had to find the right doctor.

 

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After reading some research on a medicine I was taking, I began to think that maybe my nerves weren’t working. While I suffer from GAD and spent most of my life battling eating disorders, I thought that maybe somehow together they caused the nerves that go to my belly to stop working. If that was the case then maybe there is some way to stimulate them, just like the therapies that are out for Alzheimer’s and when you ESTEM a muscle when it has atrophied too much.  When I went to my new GI doctor we talked about that and he set me up for one final test. The results were positive! I finally got a result: I have gastroporesis/delayed stomach emptying. The nerves from my brain to belly in fact didn’t work. Since they don’t work I can’t tell if I’m full, hungry, or something in between.  I was so relieved. To think I finally had a diagnosis. That something was actually wrong with me! I wasn’t crazy.

 

With this new found relief came a whole new round of stress. Yup, the stress was still around. This time instead of worrying where the closest bathroom was I had to restructure my eating and lifestyle AGAIN. I’m not going to lie it was, and still is difficult. I had to stop eating vegetarian because I can’t digests lentils, beans, and most staples of a vegetarian die (bring it on to those who disagree with research and science). I’m slowly eating more mea and figuring out how to keep my veggie loving self happy. I have to eat small portions every few hours and eat very slowly.

 

While I still have some stress about eating, I feel relief in my diagnosis- almost a sense of peace. With this new found peace I am determined to finally have a healthy relationship with food. It will take some time but hopefully bite by bite food can restore how I view food once and for all.

 

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To Those With Invisible Illnesses

Over the past few weeks I’ve been thinking a lot about invisibility. I’m not talking about the super power, I’m talking about things that can’t be seen. Like invisible illnesses. If you have followed me for some time or know me you are aware of my invisible illnesses: eating disorders, anxiety, un-diagnosed GI issues. But there are also more invisible illnesses: depression, other mental disorders, addiction, autoimmune diseases (fibro, lupus, chronic fatigue syndrome, etc…)With 1 in 5 adults experiencing or diagnosed with mental illness, and approx 50 million people living with an autoimmune disorder , chances are you have known someone who is suffering without you being aware of it it.

 

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Those of us who live with these various illnesses become masters of masking our pain with smile and concealing it better than the best make up concealer in the world. Sometimes we are too good at covering it up that people don’t believe us.  Invisible illnesses are also hard to explain when on the outside you look happy and healthy but internally your body is waging war. It seems that unless we bear our souls, post a billion IG videos documenting our lives, send up prayer requests in small groups, act sick all the time, become hermits; then do people only sorta begin to understand or have a bit of sympathy.

I can’t tell you how many times people don’t believe me when I say I have an illness. When I first began to seek help for my eating disorder I constantly heard, “you don’t look like you have one”, “you aren’t emaciated, just thin, only emaciated people have eating disorders”, “but you eat. how can you have anorexia when you I see you eat all the time?”,  “you can’t be addicted to exercise, exercise is healthy!”. Now with my mysterious GI issues I hear, “you are too young to have this problem”, “are you sure you have a problem?”, “it’s just IBS”. Do this sound familiar? “You’re just tired, “all you need is a nap”, “you’re being over dramatic”, “do more yoga”, “try this essential oil”…the list goes on and on.

 

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I have blogged about this before and keep discussing it in therapy, how difficult it is for me to work on cultivating a positive body image when my body hates me. Who else has been there? Between people not believing us, the doctors appointments, the episodes, bland diets, and tears we forget that we aren’t our illness.  It is so easy to get caught up in the physical that we wear ourselves down even more. The disconnect continues to grow and fester till it’s unbearable. But is it truly unbearable?

How can it be bearable? By coming together and lifting each other up. Reminding one another that we are beautiful beings who are capable of so much more; that there is more to life and even on our worst day it’s a miracle that we are even here. We can also see each other–and I don’t mean physically look. I mean really see. Recognize others who are like us and show support. Educate others on these invisible illnesses and teaching them how to show support for people like us. For my yogis out there, really practice Namaste.   Lastly, take time to remind yourself that you aren’t your body by reading this meditation. Then reach out to someone who needs to be seen, fully loved, and fully heard.

 

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So next time you are all alone in our bedroom wrapped up in our favorite blanket cuddling with our doggy waiting for our episode to be over, that we aren’t alone. There is someone else out there wrapped up in their favorite blanket, cuddling with their animal, waiting for their episode to be over.