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Worried Mother

4 Mar

If you’re been  following along, you know that my daughter has celiac disease. I’ve always been worried because along with this disease you can possibly get vitiligo. I’ll say this first and the only one time! There is nothing wrong with having vitiligo, it is a terrible affliction that many people have to deal with.

My daughter started having a little white spot on the side of her mouth that started months ago. I wasn’t worried because it was just a spot, I thought nothing of it. Now she has a couple more spots on her nose and her back is starting to look splotchy. I have already made the doctors appointment to see with this is! I would not love my daughter any less because, who would if their kid had vitiligo! I just worry because in life people with vitiligo have to go through a lot of things. Especially black people where it is very noticeable. Just ask Michael Jackson, who it turns out really did have vitiligo. I never really thought much of it, but my husband has little white spots on his arm. He is so pale and pasty you would never notice it unless you looked close up. I don’t know what it is that is causing my daughter skin to change but I could possibly be from what my husband has. I am getting extremely nervous and want nothing more to happen to my child, who already has a lot to deal with. Even though she’s always known she cannot have gluten or dairy she is still questioning why she can’t have it. She thinks that one day she will be able to have these foods, & I explained to her how its not possible but she gets a lot of fun things to eat.

I can’t imagine what it would be like to grow up in the 1960 or 1980 and have celiac disease.  it seems like there were no options for restaurants or products in the grocery store. even though the gluten-free craze has been dying down, there still are products and places to eat. and although many of these products contain oats which many celiacs can not have it still is better than nothing.

Here’s to hoping that my daughter does not have vitiligo. And even if she did big freaking deal, just another something to put on our gluten free, dairy and corn free plate. If anyone out there has vitiligo or knows someone with vitiligo I’d love some advice! My husband is the greatest because he said he thinks it’s cool because you look like those beautiful pinto horses. I just wished the rest of the world was that cool.  And I’m sorry for the Michael Jackson jokes as a kid. We didn’t know it was real or true to be afflicted with vitiligo later in life. People who don’t even have vitiligo bleach their skin from Beyonce, Rihanna, Nicki Minaj and so on . People want lighter skin or tan skin,  let’s just live in the skin we’re in.


Back on Healthcare

20 Sep

As of May 2012 after a year -literally 365 days-  of no healthcare for my daughter, it was finally reinstated. Now we could  finally go to go see the gastroenterologist, -Medi-Cal ended at the appt of the other gastro… a year ago- a nice addition to the health care was that my daughter got to have her old pediatrician back. The appt was scheduled for June -that’s how long it takes-. At the appt. my daughter pissed her pants and I got to walk pass the Dr., I gave her a friendly smile and she had a look of total remembrance, I was excited! -Yes! She remembers! She remembers that my daughter had failure to thrive and a distended stomach!- But in turn she gave me this kind of annoyed look which really brought my mood down.

I was waiting for her in the room and she walking and  totally knew who we were. I told her over the pass year we were dealing with her Celiac’s disease then she said annoyingly,” If you take your daughter to some one else I don’t get those records. I don’t have any information on your daughter for over a year.” I was breathless! I told her-umm hmm- that her health insurance got canceled right when we were at the gastroenterologist’s office-LITERALLY- and, that this whole time I was the one to do TONS of research and make a diet plan for my daughter! That I figured out that any time anyone ate gluten and kiss her her face it would break out, it’s called dermatitis herpetiformis!-BAM BITCHES!- Well the look of utter surprise of her face made me happy and, she apologized for not knowing. I told her that I want her to still go see the gastroenterologist and dietitian so I can run my diet plan for my daughter by them. She said we could go see Dr. Lawrence again and I told her how that guy was pretty much useless to us. She told me how he told her that he thought we weren’t feeding our daughter properly.-UHHGG!-

She said that she would order referrals to the gastroenterologist and an allergist. I was so excited, after a year of being in worry and not knowing what’s going on it was going to finally be over…-What’s over? We haven’t even begun yet!-


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