Struggling to survive an invisible illness

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sweeneykitkat's avatar
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With the 5 year anniversary of my life threatening condition fast approaching, I am reaching out to ask for support to cover medical expenses so that I may try to rebuild some semblance of my life. My name is Jessica-Faye Watters and on thanksgiving 2009 I became ill with bronchitis which soon developed into H1N1. As I'm sure many have heard, it was a brutal flu but what remains lesser known are the long term effects of this illness. I never seemed to get better, in fact I actually grew worse. One by one causes were ruled out; concerns of an eating disorder were even raised, but after seeing 2 therapists these fears were dispelled. After years of specialists, ineffective drugs, tests that were invasive and sometimes quite unpleasant, and even tube feeding after a weight loss of over 120 lbs, it wasn't until the end of 2012 that I was finally diagnosed with a condition known as Gastroparesis.

Simply explained, this is a disorder that slows or stops the movement of food from the stomach to the small intestine. Within our bodies is the vagus nerve that controls the muscles of the stomach that normally contract to break up food and move it through the gastrointestinal tract as well as the hormones and enzymes that helps us digest food. It goes deeper than this, however, also controlling our involuntary functions such as breathing, blood pressure, swallowing and heart rate. Even our emotions are affected by it. Gastroparesis occurs when that nerve becomes damaged by injury/illness and the stomach muscles cease to contract normally. This slows or all together stops movement of food from the stomach to the small intestine.

My day to day life includes but isn't always limited to the following:

  • Constant abdominal pain
  • Constant Nausea
  • Vomiting (inability to keep ANY food down or even small bits of fluids at times)
  • Constipation (which can switch to diarrhea)
  • Low Potassium, Magnesium, & Iron
  • Muscle aches and weakness
  • Hypersensitivity (to both touch and temperature)
  • Insomnia
  • Dehydration
  • Abdominal Bloating
  • Stomach Distention
  • Hair loss
  • Dry Skin
  • Anxiety
  • Depression

Even with a diagnosis I still find myself in medical limbo. Since Gastroparesis has no known cure at this time and without earlier identification I have become too weak to even take the medication that would normally be prescribed for this. I was given a trial of Metoclopramide, Domperidone and Erythromycin (3 of the leading names in Gastroparesis treatment) but after having bad side effects from all, the last even landing me in ER I was told I could no longer even attempt them due to the potential of heart damage it could cause. This is due to having also developed chronic low potassium or Hypokalemia.

Different procedures exist to try and combat this condition but my specialist has advised me to keep clear of them, saying that his other patients have actually gotten worse after having undergone them and while tube feeding is an option my blood work and state of mind are healthier by my current regiment of trying to eat by mouth, even though I can't keep it down. Come November, I will be attempting the Erythromycin once again; I pray my body will be able to benefit from it.

More and more I see news of fellow GPers passing away and I am left scared and longing for my old self. I want to be there for the people I love and who have supported me throughout this nightmare. I can't begin to describe the expenses that have been exhausted,  financially and emotionally. One by one I lost the dreams I'd struggled to achieve. I am passionate about expressing myself through my art, whether it be by hand, computer or photography; I have a certificate in Pre-animation/Illustration had been transitioning from Algonquin College's Animation program to a winter intake course, with plans to apply to Photography when my health became too weak to attend school. I now carry a hefty student debt, caused by medical expenses rather than education. With the aid of my loving parents I took a 6 month leave from work at Coliseum Ottawa Theater until the costs were too great. I worked in a limited position at the theater for another year only to have my health decline faster. It wasn't until my doctor firmly advised me to do so that I had to leave the job I loved. I am on Disability now but have discovered many limitations with what the program can actually provide. While full recovery may seem a distant dream I want to continue living my life and being a part of others.

There are different alternative measures and therapies that I would like to attempt to try and stimulate healing, not only physically but emotionally as well, but I am unable to afford them at this time. There is also medical equipment to help ease the day to day symptoms, such as a hospital bed since I am unable to lift my body some days due to the deterioration, enamel restoration for my teeth (the amount of vomiting has left the nerves exposed), tools to help food preparation since my energy is limited and even just day to day needs like high calorie foods to gain weight and warm clothing for the upcoming Winter since I am now so sensitive to the temperature. Additional funds above the target goal would be grealy appreciated to realistically cover what I need. I believe if I could at least build up my strength and get my weight up, I can survive this ordeal.

Any support would be greatly appreciated at this time. Gastroparesis is considered an invisible disease, and even those who are suffering the worse do not always appear sick to the people around them.Many have lost their battle and I refuse to lose mine!


Any support can be provided through the link below, where my story as well as additional content can be found:
www.indiegogo.com/projects/str…

© 2014 - 2024 sweeneykitkat
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Cytchii's avatar
Sometimes at my moms work hospital beds come in being offered she wonders if you or some one you know would be able to pick one up to transport it