Prader Willi

If you are unfamiliar with this disease, to sum it up- the person who has this syndrome does not recognize when they’re full- therefore, food and pantries have to be locked and/or hidden. It’s a terrible disease for all involved- both having to hide the food or monitor the intake and for the person who is always feeling starved.

Now, I do not have this disease (thank Gd) but I do have a side effect of the medication that is hopefully saving my life- and that is constant hunger. Now, maybe that’s a wrong term because I do feel full to some extent… but let me give you an example.

I was initially told by a very old friend of mine to stop all sugar, flour, decaf and soy, and to do whatever it takes to cut out these foods. For about a week, I did try that- and my appetite was gone (anyhow). However, I became lethargic or experienced the Keto flu at a time where I could not breathe and felt weak. My mother- very concerned, came into my room and told me how her friend who is a doctor, said I must not lose weight ,and that I have got to eat- eat whatever I want.

Like a lightbulb, I ate two soydogs after days of not eating, and felt better. It was great because I had just started my medication and was told this was not the time to lose weight.

Unbeknownst to me- since I put hubby and my mother in charge of all communications with the doctor, one of the side effects was weight gain. How lucky can one person be??? First to have the rarest mutation to instantly wipe out 90% of my hard drive, then to be the lucky 1-2% of the world’s population to have a specific drug for said mutation…. and third- to be one of the smallest groups of patients treated for cancer, who will need a lifetime membership to WW.

I used to joke to my coworkers when they said they had a stomach bug and couldn’t come into work- how lucky they were and to enjoy the weight loss…. so to hear cancer (negative) and think weight loss (huge plus), I mean… I had a silver lining.

All that aside, I still have my head craving cookies or anything sweet (even coffee), but the moment I taste what it is that I’m craving, the taste repulses me. Now, that should be the end of it- great, tastes yucky- will lose weight. On the contrary, I am now trying to fill that hunger with pretzels, fiber cereal, mustard and bagels. I haven’t had this much carbs since I was in my 30s and wasn’t negatively affected- but boy am packing it in – topped with French’s. 

Worst part is: mentally I know I should stop eating but physically, my body is asking to just pour the flour down my throat…. all the livelong day.

About Lady in Red

mom of 3
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