A Week of Letters

After a miserable time last week of cold and snow and general lousiness I was greeted with a week of letters….

Monday- A letter from my state senator, Mark Kirk, saying he will personally help me with my insurance company!!!

Tuesday- A letter from the Attorney General, Lisa Madigan, saying her office will help me deal with my insurance company!

Wednesday- A letter from my insurance company stating that instead of owing $3,023,00 for my CT I now only owe $22.15.

How about that?! It was very exciting and I did a little happy dance. Then I called Loyola to see if they could fax me an updated bill….They haven’t received anything from my insurance company yet, but they made a note on my file and will re-bill me.


So, somewhere between the Department of Insurance, a senator and an Attorney General I guess I finally ruffled some feathers….

Maybe this year is starting off on the right foot???


Cottage Cheese Roll Up Cookies

So every year around the holidays my mom would make these cookies, Cottage Cheese Roll Ups. They are like a rugelach, but flakier and delicious! We make them and eat them pipping hot out of the oven. because some cookies just taste better that way. They still taste good after they are cool, but there is just something about a flaky, steaming hot cookie on a cold day!

The big thing is that they cookies have nuts in them….since I can’t have crunchy foods, my mom ground them into a “nut dust” and used that-they tasted even better!  IMG_0163

Yes, the recipe is *that* old……Remember to substitute butter for oleo and grind up those nuts!!

IMG_0164The dough is rolled out and sprinkled with goodness!

IMG_0165                                                  All rolled up and ready for the oven!

IMG_0168Nothing like some cookies and tea on a cold day!

Update on my Bill

Between the holidays and the hellishly cold (35 below) and snowy weather I haven’t updated anything in awhile.

I spent the day after New Years on the phone with Aetna because they sent me two bills. One was for my old insurance and one for my new. After waiting 2 hours on hold I tweeted out my frustration and was immediately tweeted back by their customer service team and then my call was answered. So, there is a reason for twitter!

Apparently my old bill was just to let me know what I was paying-like I could forget!

I also received a letter from the state saying that they received my complaint and they are looking into it.

I have yet to hear anything back from Mark Kirk, Lisa Madigan or the President. I did e-mail all of them. I now get to enjoy emails about how super awesome the Republicans are and how awesome the White House is. They actually used the phrase “awesome”. You know what’s awesome? Replying to someone.

When I had trouble with my car last year with all of the GM recalls and I go the run around from my local auto dealership I contact Rep. Schenieder’s office and was immediately contacted back. They got their contact at the NTSB and put the fear of God into the dealership and the matter was quickly taken care of. I was expecting the same response. I guess because its that weird time in between people being sworn in that my reply is late.

My appeal with Aetna

So way back in July when I called Aetna to ask them if Loyola was in my network and they said yes and all I had to do was walk in and have my CT and it would be covered 100%….and that turned out to be not true and I had to open an appeal stating that I was told I could go there and they should pay for my claim.

Well, I got the appeal resolution the day before my birthday. That prompted my Mom to tell me that until after Christmas no opening anything unless it resembled a holiday card. They denied my appeal. Aetna states that what they say over the phone does’t guarantee coverage. So…how else am I supposed to divine where I can and can’t go and what is and isn’t covered?!

After a very lengthy call to Aetna (again) on Boxing Day (seriously, I thought the rep had hung up on me at a point after I told them that I felt betrayed and that if this is happening to me it must be happening to other people to and that wasn’t fair to anyone) I was told that I could do a written appeal to the state.

So, I spent two days drafting up a letter detailing everything phone call by phone call (I keep excellent records as should anyone dealing with any problem. I write down the date and time, who I spoke to a write down what they tell me) and explaining my situation. I included all my paperwork from the prescription to pre approval form to appeal denial.

I will send it out, cross my fingers and for some extra luck I will be in touch with the state Attorney General, a Senator, NF Midwest and I’m even thinking of writing to the CEO of Aetna, Mr. Mark Bertolini to state my case.

I’m a person, not a piggy bank. If anyone thinks that I will give up….remember, I got my congressman to put the fear of God into my local car dealership when they kept pushing of my real repairs. The government is supposed to work for the people.

To quote Shakespeare:

Oh, when she’s angry, she is keen and shrewd!
She was a vixen when she went to school.
And though she be but little, she is fierce.

The 12 Days of Christmas…my version

On the 12th day of Christmas 2014 gave to me…..

12 thousand dollars (spent on my medical crap this year)

11 days missing work (to see doctors/have tests)

10 explanations (about what NF is)

9 pureed smoothies

8 bowls of pudding

7 bills I’m paying

6 soup recipes

5 CALLS to AETNA (really, it was like 20)….

4 MRI’s

3 different hospitals

2 CT scans

and 1 NF specialist visit

Merry Christmas everyone! May your holidays be merry and bright and smooth sailing for at least one day!

Another Phone Call to Customer Service

I’m really getting sick of this.

First is was the bill for my CT that I had to appeal because I was LIED to and its going to cost me money. I still don’t see how it is MY FAULT for going to a hospital to have a test that I had pre-approved and was told was in my network. It turns out the girl I talked to didn’t know how to read her computer and what I thought was in my network, isn’t. So, this becomes my fault for going outside my network.

Now its my specialist visit. For some reason my insurance company was never billed by the hospital so instead of a $60 copay, I was sent a $700 bill. After much head smashing (not really-that would break my jaw) and staying on hold the hospital is re submitting my bill. I don’t understand how my insurance company never got a bill because I can look up the claim online. If I can see the claim, how can they not see it?

I’m just hoping that this isn’t another hey we told you it was in your network and you didn’t need a referral but we lied about that because we are shits that only care about money rather than actually helping you and we think that you will just give up because seriously, who fights a bill for that long?

I’m sick of having to fight for every single thing. I think I’m going to right to my senator/congressmen/state rep, etc and express my anger and frustration with the whole thing. My state rep greased the wheels and got my car fixed for me, so they should be able to deal with a health care company, right?

A Phone Call from Comers

Well, I finally called and got the low down on my visit to the NF doctor.

I do have mandibular hypoplasia, the nurse tried to be upbeat by saying “most people have hypoplasia of the orbital bone and their eyes fall out!”…not helping….not helping…..

Eat food that don’t break my jaw; stay away from crunchy, hard and chewy foods. So still no popcorn, hard pretzels, licorice, taffy or caramel….(or gingerbread cookies…thank goodness for Lebucken!)

Don’t put myself into situations were I could break my jaw. Be careful because my jaw might dislocate.

Oh, and I have to get MRI and CT’s every year to track my progress……..

But, I don’t have to have surgery. Which is good and bad…..

Things that can break my Jaw in December

Since I pretty much blew this for November I thought I would start out December with this. So, here are 5 things that can break my jaw during the holiday season…..

5. Deranged Mutant Killer Monster Snow Goons: From the mind of Calvin and Hobbes, you can read about them here: http://calvinandhobbes.wikia.com/wiki/Attack_of_the_Deranged_Mutant_Killer_Monster_Snow_Goons

4. Black Friday through the New Year Shopping: Giant crowds of people pushing and shoving each other instead to get things they don’t need. One stray elbow and I’m done!

3. Holiday Sweets: This includes gingerbread men, sugar cookies, candied nuts, candy canes and much more! This year I will be dipping all of my cookies into tea and sticking with a nut free rugelach. Maybe nut free fudge too?

2. Winter Sports: Ice skating, skiing (all kinds), snowboarding and sledding are most likely out. I think I can get away with some light snow shoeing….

1. Winter-Slippery sidewalks, curbs and roads can lead to a broken anything. Walking around downtown Chicago you are bound to see “Caution: Falling Ice” signs and when wind and ice combines; you get blown down Lake Shore Drive. I just have to hope my Yaktrax keep me safe!


A different kind of Pumpkin Pie


Red Kuri Squash

Happy Thanksgiving everyone! I thought I would share a kind of pumpkin pie-pie recipe. If you ever have the opportunity to get Red Kuri squash-buy it! It is silly smooth and tastes like chestnuts (my favorite!).

I had never seen this kind of squash before, normally you see butternut, acorn, kabocha, spaghetti, etc…I was told that this squash is more of an heirloom that is grown in Meso America and that it tastes like chestnuts….Well…you had me at chestnuts. I love chestnuts and I’m happy that they are making a comeback in the American garden. If I could find a place to plant a tree in my backyard, I would. No Thanksgiving in my house is complete without chestnuts. Right before turkey day, I like to roast them in the oven. I put my chestnuts in my dressing and it does NOT go in the bird! Stuffing is mushy, disgusting and it takes away from the turkey. Dressing is delicious and while I can’t have it as crispy as I want it, there’s nothing some gravy won’t be able to fix. I always get twice as many chestnuts so I can eat them as I peel them.

I first cut the squash and roasted it in the oven. The squash is *very* hard to cut. I ended up using a big sharp knife and banged another knife on it to hack my way through it. I scooped out the seeds and quartered each half. I drizzled melted butter over the squash (it was on a cookie sheet) and placed it in the oven for an hour at 400 degrees.
When it was all nice and golden brown, I took the squash out and let it cool. Then I sliced the skin off and had my first taste. I tasted exactly like chestnuts! It was so weird….
I then pureed the squash. You can use a food processor, blender, etc…..
Wile the squash was cooking I was making my dough. I used Martha Stewart’s recipe for tart dough because it sounded really good and when it’s baked, it tastes like a sugar cookie.


6 tbspn salted butter at room temperature
1/2 cup powdered sugar
2 egg yolks
1 1/4 cups all purpose flour

First beat the powdered sugar and the butter in an electric mixer (with the paddle attachment) until they are creamy. I chopped my butter up and added it slowly.

Add the egg yolks one at a time and mix them in.

Add 3/4 cup of flour and mix on low speed until combined. Then add the remaining 3/4 cup flour and mix until that is combined. Do NOT over mix!!!! Then you will have tough dough that will not want to be rolled out. The key is to mix the flour in until it is just incorporated into the rest of the mixture.

Turn the dough onto a piece of plastic wrap and shape it into a circle, flatten it, wrap the dough and put it in the refrigerator for 2 hours or overnight.

If you time things right, the dough can be chilling while the squash is cooking…..

On a lightly floured piece of parchment paper (or a silpat pad), roll out the dough so it will fit into a 9 inch pie pan. Trim the overhanging dough. I used my left over dough to make “cookies”. I just cut up the strips of dough and popped them in the oven for a bit, they tasted like sugar cookies. Put the pie pan with the dough into the freezer for 15 minutes.

Pie crust ready to go in the oven

Pre-heat the oven to 375 degrees F. Remove the pie pan from the freezer, place a piece of parchment paper over the dough and fill the pie with dried beans or pie weights. Bake until the edges are just beginning to turn golden brown, about 15 to 20 minutes.

Remove the parchment and pie weights/beans (the weights will be hot!) and return the crust to the oven and continue baking until light golden brown all over, about 15 to 20 minutes. Cool completely on a wire rack. While the shell is cooling, you can make the filling!

              I had enough dough to make a mini-tart as well.

Kuri Squash Pie Filling

I modified one of my favorite pumpkin pie recipes for this.

8oz mascarpone cheese (this is what gives tiramisu it’s creamy texture)
1 1/2 cup roasted kuri squash puree
1 egg
1/2 cup packed brown sugar
1/2 tspn fresh ground cinnamon
1/8 tspn fresh ground nutmeg
2 tblspn all-purpose flour
1 tspn vanilla extract
Pre heat your oven to 350 degrees F.

In an electric mixer with the paddle attachment beat the mascarpone cheese until smooth, a minute or so, you’ll be able to tell that it’s loosening up a bit. Add the kuri squash puree, egg, brown sugar and the spices. Beat until they are incorporated. Then add the flour and the vanilla. Beat until everything is combined.

Pout the mixture into the crust. Place it in the oven for 45-60 minutes. The surface should have some cracks in it. If you are worried about your crust burning, you can add some tin foil around the edge to protect it.

Remove the pie from the oven and let it sit for 15 minutes. The you can put it in the refrigerator for 4 hours or overnight. Garnish with some whipped cream and enjoy!

                  Cake needs a reason, pie, not so much. Yay Pie!

This pie has a super velvety texture and the flavor is outstanding. It’s not too sweet and you can definitely taste the chestnut tones. The best part about this pie-you are eating your vegetables! Red Kuri Squash is a good source of fiber, Vitamins A-B-C, calcium (builds those bone), riboflavin, potassium, thiamin and beta carotene. It is low calorie and low sodium.

A Visit to Comer Children’s Hospital

Another hospital visit.. this marks the third hospital and the fourth doctor in less than 6 months. I feel like I should have a punch card or something for a free visit after so many times….

I had to go to a children’s hospital. The doctor I went to see is an expert in NF and he is out of their Clinic


Trying to blend in with this guy in the lobby.

. There was some great artwork in every area of the building. The hospital was really inviting and fun in a way that hospitals usually aren’t.

I love this sculpture of a cat and birds.


And then there was this puzzle piece plan on the floor that the Clinic was on.


It was a three hour drive into the city.

Before I saw the doctor I had to give a history of why I was there. I can pretty much repeat this without thinking, verbatim-that’s how many times I’ve had to do this lately. My reflexes were tested and a lot of touch your nose, touch my finger games were played. I had to state my name, date of birth, were I was, who was the president and V.P.

I have to call back in 2-3 weeks for a full report since the doctor hasn’t had a chance to look in depth at my MRI and CT. But I got this much.

I have something called mandibular hypoplasia which you can get with NF. My jaw atrophied at some point and stopped growing. There was nothing that I could have done to prevent this or stop it.  The doctor wants to see whether what I have in my jaw are cysts or giant cell tumors (they are mostly benign, but its always good to check).

You normally leave these alone because they are very hard to surgically remove (suck it other doctor who wants to slice me open).

The big thing to make sure is that I do not have any plexiform fibromas. These are bad and are cancerous. (See all the fun new words you learn when you have a disease?).

Another reason to not have surgery is that the bone is very fragile and it wouldn’t heal well.

So, I am waiting once again. I am still on soft foods. I was told that I have super fun things to look forward to when I get older, like lots of different forms of cancer.

So, waiting…..waiting….