Enough is enough, I’m taking the control back

So the Topamax was too strong.  Way too strong.  That’s why the very next time I took it I went down to one pill and that’s where I’ve been ever since.  I just can’t see going to two pills yet.  I was nowhere near ready and I don’t think I will be for a while, if ever.  Believe it or not the doctor actually wants me to take 4 of them, FOUR.  In a day!  Not happening.  NOT.

a cup of nope

The thing is, I hate sounding negative and I hate the way that it slows down my brain.  It makes time feel like it’s going backwards.  It confuses me, it fatigues me, it frustrates me, but mostly I feel like it’s not a long term solution and I’d much rather have a solution than a quick fix.

It's Temporary

Besides, this all came on so quickly.  I mean, I’ve had migraines my whole life but never so frequently and never so intense.  They just got worse over time and along with some other symptoms.  I truly feel like if we could get to the bottom of this I could live with the occasional migraine rather than take these powerful drugs and this is what bugs me the most.

I was thinking about it all this yesterday when I was out on my morning walk and that’s when I made a decision.  I got back home and called my primary care doctor and I told her that I was not going to wait any longer for a GI doctor to fit me in here in Clearwater and that I thought she would have better results getting me in quicker and I expected her to do just that.  This morning her assistant called me and let me know that she had sent a referral over to the G.I doctor down in Venice and that if they did not call me by Tuesday then I should call them.


I have already set an alarm on my phone for noon on Tuesday and if I don’t hear from you by then Dr. D, I’ll be calling your ass….

I also went through every single one of my medical records going back 25 years and guess what?  I have never been tested for celiac disease, ever.  So I asked the doctor’s assistant if she could also ask the doctor if she could just go ahead and call the lab and order the blood test for celiac disease.  I mean it’s a simple blood test right?  I read all about it on the celiac websites.  It’s a first step and at least I could be proactive while I’m waiting for the GI doctor and still consuming gluten right? I mean I’ve only been waiting for 3 months already.  Three. Months.

what?  NO

No, see, they would rather me linger here in pain because it’s not procedure to just call in a blood test without an office visit and since they’re sending me to a G.I. doctor for a referral I’ll just have to wait….

I hate waiting

Hmmmmm, I’ve got a bill from the imaging center for over 7,000 dollars for MRI’s the doctors ordered and the insurance company approved.  They weren’t conclusive enough for a diagnosis yet the doctor ordered them and the insurance company approved them but now won’t pay for them.  I can order the screening test myself from an independent lab for around 160 bucks.   I think we all know what my next move should be.  If the doctor doesn’t call in that damn test today, I’m going to do it myself on Monday.  It’s time to take my life back.

Y’all have a great weekend.  I’m gonna eat all the damn gluten I can because come Monday I’m gettin that test and it may or may not be my answer but at least it gets me one step closer.

Do you find it insane that in America one can have health insurance and find it easier to pay out of pocket?

On a scale of 1-10 how happy are you with your health care?

Do you or anyone you know suffer from Celiac Disease?

2 thoughts on “Enough is enough, I’m taking the control back

  1. Yes, take your life back! Go kick ass! I find that the doctor is a often a good guide in my health but I live in my body, I know my body!! If you want a dx for celiac you NEED to have the endoscopy. My dad has celiac and I have been tested. I am not saying an endoscopy is fun (well, you won’t remember any of it but the prep which meant no food and then no water about killed me….yes, I know, I am a drama queen but I hate fasting) but it is the gold standard to a proper dx. I have no doubt you are going to get to the bottom of this. Stay strong, keep your chin up…keep fighting, girl.

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