From the Desk of Michelle: Update on My Health

The search for treatment and progress on the eosinophilic esophagitis continues! Since my favorite primary doctor is no longer practicing (so unfortunate as I loved how much time she took to assess, how natural her approach, and the avoidance of prescription drugs she had), I decided I must switch doctors. I’ve been sort of facing the run around with the GI situation. Supposedly, they were ordering me a steriod liquid prescription I must drink and wanting me to see an allergist. The nurse called me on the 2nd and stated I’d hear from the pharmacy an hour north where I had to pick it up. Well, two weeks ago, I called again because still nothing. The nurse replied in a voicemail that they would try to get my information to an allergist and also the pharmacist wondered if I wanted to try the drink or not and pay my $55 copay. Still, the nurse stated the pharmacy would be in touch with me.

So, here it is going on two weeks later yet again and still nothing. I met with a new primary doctor last week who is also more the natural and lifestyle approach too. She and I discussed my situation and she researched immediately potential treatments such as Cingular and the Elimination diet. That almost seems impossible through the holidays, especially with family members not understanding my needs. Plus, we’d hate to cut out SO much and an allergist can directly tell me what is up. The new doctor also stated she would rush a referral to an allergist for me too, noting how much I was congested even just from air pollens. Ironically, air pollens only consist of 1% of the cases of eosinophilic esophagitis. I was impressed! The very next morning, one allergist office called first thing for the new referral from the new primary doctor I just saw the night before. Yet, that afternoon, another allergist office contacted me FINALLY with the referral from the GI, nearly a month following the endoscope and biopsies revealing the condition. Yet, still NO call from the pharmacy.

Upon reviewing the prescription I have concerns. It’s $55 per each time I fill it. Everything the hubby, also a Licensed Practical Nurse, and myself read states one must remain on it for life. It’s a steriod to boot, and the $55 fee only lasts me roughly two weeks. So, every two weeks I’d have to drive 100 miles to pick up another dose… not to mention that I’ve learned it can cause severe Candida infections in the body. Um, not really something I’m too thrilled about. Yet, can I get answers about it? No. Even the primary doctor wasn’t really knowledgable on the auto immune disease and I’m not getting much info from this GI who I’m not even scheduled to follow up to an October endoscope with until mid to late January.
So, I did schedule with the allergist the GI referred me to. This way they will have the biopsy results, the scope results, and the information I’m looking at Eosinophilic Esophagitis. My appointment with the allergist is right after Christmas and we’ll see what they reveal. I do know we avoided dairy and wheat in what the hubby and I prepared for our Thanksgiving feast. However, my mother prepared a pumpkin cheesecake pie. I noticed no problems with anything until I worked on a piece of that pie and felt my throat acting up. As my husband points out, it had wheat, eggs, and dairy.

That’s been the hardest part so far. People just don’t seem to get it and still act like I’m just trying to lose weight. Instead, they don’t seem to realize I must make these changes. I felt awful when a volunteer at my job told me to just enjoy string cheese they brought around on snack cart, saying stop reading labels and I was getting thin enough. I had to correct them, sharing it’s a matter of my health. If left untreated, eosinophilic esophagitis can spread into cells in the stomach. My grandfather who suffered getting stuck and food impactions off and on to the point of dilation required in his esophagus died from esophageal cancer in his 70s. Coincidence? I’m not sure, but it is a buildup of abnormal cells with the white cells ever present from constant irritation. And to think that just one bit of whatever food allergy exposure I receive can have inflammation of 30 days, it’s kind of scary.
So, we’ll see! And here’s hoping!

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