Finally!!! My Referral to the Mayo Clinic is IN!

What a process! I guess I'm lucky since it took me just a month and I know these things can take several months to get. But it was still very frustrating. The referral reads for a Dr. Maria Aguilar and she is in Scottsdale with Wingerchuk, he's who I want to see. I'm going to try to change the name on my referral, which I am usually allowed to do but if not, I'm gonna see Aguilar.

I'm hoping that if I have to see her, at least he'll be there to assist or available for her to run test results by. You can guarantee, I'll be requesting him to view everything. I've read and have been told that he is the best at the Mayo Clinic in Arizona and you already know, I want the best.

Unfortunately, it looks like my visit will not be completely covered by my insurance company. We're military so our insurance usually covers everything, no co-pay. But since the Mayo Clinic of Arizona is out of my network, there's going to be a hefty deductible and other fees. With all the tests they'll have to run to confirm my NMO, it's not gonna be pretty.

I'm going to call my case manager on Monday and get some facts about everything but, I feel a fundraiser coming on. =)

Referral to Mayo Clinic Update

There isn't one. =( So....frustrating!!!

I called my GP's office again today and asked them if they have received anything from my neuro with the words, "Mayo Clinic" on them. Whether it be a referral or just some sort of correspondent requesting that they (my GP) create a referral for me to the Mayo Clinic and send it to my insurance company.

Nothing!

So I called my neuro's office and guess what... VOICEMAIL! And no call back today. So after giving them a break for a week or so I'll be back on their asses come Monday morning. I do not understand why they can't just pick up the phone and return my phone call. Even if it's to say, "Mrs. Ellis, I received your call and I'm looking into it now." Good grief, these people drive me nuts!

Off Topic - New blog design is up. Hope it's more pleasing to the eye than that last template. =)

Decisions. Decisions.

It's been a busy week and I have been completely ignoring Devic's. Ahhh... it's so nice when this disease goes into hiding, especially when you can also mentally tuck it away and forget about it for a while. I think these last few days have been the first in which I didn't subconsciously let my Devic's control what I do.

I've also been slacking on my doctor stalking. Or referral stalking. Whatever. But I've liked it. Now tomorrow when I call my GP, they better have the damn referral (and the right one!) from my neuro or I'm gonna go ape shit on their asses! LOL! Kidding. Kind of.

So on to my decisions.

On August 24th, I have my first Neuro Ophthamologist appointment. On August 24th, I also have the opportunity to appear as an extra in a movie. Not a big deal, but the experience would be nice and I get to look like crap in the movie so no need for beauty products. YES!!!

I haven't made up my mind yet. I know my health is important and this appointment is very important to my health, so I'm sort of stuck. However, if my appointment were pushed back a week, or even a month, will it hurt me? Probably not. I'm going to call the Neuro Ophthamologist office tomorrow and see if they have any availabilities on any other day in August. Maybe I can get lucky and push it back by a few days or even a week. Not likely though.

BTW... Things have been going well for me lately. I'll update on diet, exercise, and everything in between very soon.

Chasing A Dream

Since I was a young teen I had always wanted to be a SUPERMODEL! I've let the "Super" part go and now I just want to be a model. And.... maybe do a few commercials here and there. Ya know, if I'm lucky enough to get that opportunity. What better way to make money than doing something I've always loved and something that seems to be a pretty cool job.

When I was 18 I got pregnant with my son, who will be 9 in October, and needless to say, mommies dreams got put on hold. Between then and now, I have given birth to two children, acquired about 50 stretch marks, gotten married, moved to three different states, gained a good 40+ pounds, lost a good 40 pounds, and now here I am.

I live close to one of the biggest cities in the industry so just this week I decided, I'm gonna dive right in and see how long I can swim before getting spit out. Well, as it turns out, I was spit out pretty quickly.

(Quick note: Modeling has always been in the back of my mind and it's always been something I wanted to do. For a while, I was not satisifed with my size and I was probably even too large to be considered a 'Plus Size' model in the industry. Even though I think their idea of plus size (a 10) is ridiculous, it is what it is. So I've been working really hard to get in shape not only for my disease and to make myself feel better, but I've also been doing it for the hopes of one day being in front of the camera.)

On Wednesday I went to an open call at Wilhelmina. I was so nervous the night before and for that entire day. I drove almost 2 hours to LA and made it to the office with 30 minutes to spare. I sat down, a man came out, he grabbed my photos along with two other girls, and took them to the back. Not even a minute later, he came back out and passed each set of photos back to us while simultaneously saying, "We'll pass".

I wasn't upset though. This is how the game works. It seemed to have made me even more determined than I was before. I came home, had my husband take some natural photos of me (the two above are a couple of them) and I sent them off to Ford. Ha!

I also started searching for all the modeling, talent and whatever else agency's in Los Angeles, San Diego and surrounding areas. I have contacted many people and a couple of days ago I even lined up an interview with a promotion company. Then today I got news of two more companies that are interested in me. One is for an independent film company in San Diego that wants me to come down and test shoot for a commercial and a catalog, the other one is also in San Diego and they are a modeling and talent agency that want to do a face-to-face interview.

Yay! and Whew! I'm feeling a bit overwhelmed at the moment. And it'll really suck if none of these opportunities follow through because now I've just aired everything to the world wide web. We shall see.

Sometimes, dreams do come true. Other times, you have to make them come true.

Keeping Track

If you have frustrations with your doctor, you're not alone. It was a few days after my Devic's diagnosis on June 22, 2010 that I decided I wanted to see the doctors at the Mayo Clinic in Arizona. After speaking with my insurance case manager and learning that I would need to get a referral to the Mayo clinic from my Neuro, I started my log.

Here we go...

Carol (Office Manager at my Neuro's) - Left message to confirm Doctors email address since no one else in the office was allowed to do it. I was going to send my request directly to him.

8:37am - Monday, 6/28 - Message Left
9:19am - Tuesday, 6/29 - Message Left

Gave up on her quickly and decided to go with...

Jamie (Referral Coordinator)

11:15am - Wednesday, 6/30 - Message Left
12:12pm - Thursday, 7/1 - Message Left
9:41am - Friday, 7/2 - Message Left

SURPRISE!!!

Jamie called me back on Friday, 7/2. She told me I needed to talk to Mary (fantastic!), my neuro's assistant. She will be able to request the referral from him and get it submitted. Jamie did tell me that she would speak with Mary about it but if I didn't hear back from her in a week, to give her a call and check the status. That's always comforting, isn't it? It's like they're saying, "I'll most likely forget about you, so call me back and leave a detailed message. That way, I can hurry up and do it before I return your call."

So I waited a week and of course, I heard nothing.

Mary (Neuro's Assistant)

10:03am - Monday, 7/12 - Message Left
12:37pm - Wednesday, 7/14 - Message Left

Morning of 7/19 - I finally spoke with Mary. Each message I left was letting her know that I was checking status to see if my neuro has written the referral. I explained the whole situation when I spoke to her and she said, "Oh yeah, he's written it and I have sent it over to Jamie to send it to your General Practitioner". Why couldn't she just call me and tell me that? So I then tell her that I will check with my GP's office and confirm receipt. Thank you and goodbye!

Secretary of General Practitioner's Office:

Me: I'm checking to see if you received a referral for me to go to the Mayo Clinic in Arizona from my Neuro.
Sec: Let me check...... Oh yes, I see it here. Let me call them and see if this is what they actually want me to send to your insurance for the referral to be approved or if there's something else.
Me: Great! Will you call me back or should I call back and check status?
Sec: Call me back this afternoon.
Me: (Great....) Ok. Will do!

Monday afternoon I call her back...

Me: Hi! I spoke with you earlier regarding my referral from my neuro's office. You were going to call them and confirm that's what you were supposed to send.
Sec: One second please.....
Me: (This hold music sucks!)
Sec: Yes. All I have here is a consult from your June 22nd appointment detailing the conversation you had with your neuro and your recent diagnosis.
Me: Uhh... You told me earlier you had something mentioning the Mayo Clinic in AZ.
Sec: No, we don't have it.
Me: O...K.... I'll call my neuro's office and get them to resend. Thanks!
Sec: Ok. Thank you!

Jamie (Referral Coordinator)

9:38am - Tuesday, 7/20 - Message left.

Tomorrow I'll call my GP again and see if they have anything. If not, Jamie is getting another call from me. I don't know about you but to me, this is bullshit!

Saying Goodbye

To Copaxone.

I don't know why I've hung on to this stuff since deciding to stop on June 27th. Maybe because I was unsure about my decision. Yeah, that's probably it. Because I look at that picture and think, "Am I making a mistake?" I'll never know.

Like I've said in past posts on my other blog, you can really never know if a medication is working. Unless of course, you're able to clone yourself to a "T" and give person 'A' the medication and not give it to person 'B'. Then you'll know. Unfortunately, I'm not in a position to clone myself so I'll just have to go with what feels right.

And right now, it feels right to not inject myself anymore.

I journeyed over to the Hazardous Waste Materials location in my area and handed over all my Copaxone. Thousands of dollars worth of medication, gone! Granted, I only paid $9.00 for the medication but still, that's a lot of money.

Oh, but wait! I get back in my car and what do I find after leaving the HWM place? Three sneaky, fully packaged syringes (unused of course), trying to hide behind my gym bag on my front seat. A sign? I don't think so! But I could've swore I heard a voice ask, "Are you sure?"

Hell yes!

They were terminated upon my arrival home. So it's official. O. ffic. ial. I am not on any disease-modifying meds nor do I have any in my possession. A clean start.

Until of course, I get my referral to the Mayo Clinic in Arizona. Oh... the drama there! I'll update soon but I'm sad to say, not much progress has been made. Other than my progressively growing phone bill.

Progress Report - Take One

So I'm doing this whole exercising and eating healthy thing. It's extremely difficult to stick with some days but I truly do feel better when I feed my body healthy foods. Now, I'm not here to preach to you because to be honest, I have a hard enough time sticking with it myself. I've been on-again, off-again, on-again, so many times I can't even count. I'm just sharing my experience and hopefully informing and inspiring some of you in the process.

I started eating healthy and exercising after my misdiagnosis in October of 2009. Then I was off-again for a few months and I think I was on-again sometime in March or April. Then off, and finally back on (hardcore) 10 or so days ago.

You see, I'm a wreck. Staying committed is a pain in the ass.

You're probably looking at the picture above and thinking, "What the hell does she mean by "She's on her way", looks to me like she's already there". My reply to that, I have fat in places that I prefer it not be, and I'm sparing you those pictures. And I'm not doing this for anyone else but myself. And maybe a little bit for the Hubs. =)

My Goals:

1. Drop 12 pounds.

2. Tone. Tone. Tone.

3. Have Superwoman muscles to go with my Superwoman attitude.

4. Be 100% confident in my body.

5. Win an Olympic Gold Metal.

Just kidding about number five. So far I have lost 3 pounds and the muscles are on the way. My birthday is in late August and although I know I won't have Superwomans body by then, I do hope to be down the 12lbs.

I'll definitely keep you updated and if you have any advice or want any (limited) advice from me, I'm here.

(Now that I've killed maybe 20 minutes typing this, I must find something else to keep my mind off those delicious turkey burgers I made for dinner tonight.)

2010 NMO Patient Day

I know that's a bit small so for more information check out Guthy-Jackson Charitable Foundation. Or, you can go directly to the NMO Patient Day page HERE.

I'm attending and I look forward to meeting new people face-to-face with NMO. Hope to see you there!

50 BEST Low Calorie Snacks 115-125 Calories (August 2010 Issue of Good Housekeeping)

I thought I would share this information with those of you who are trying to eat right and/or lose weight. I'm one of those people. It's a lot easier to stick with it when you have tasty treats to choose from.

SWEET

1. 11 M&M Pretzel Chocolate Candies
2. 1 pkg. Q.bel Dark Chocolate Wafer Rolls
3. 1 Deep Chocolate VitaTop VitaMuffin + ¼ cup raspberries
4. 1 Van’s Natural Food Lite Totally Natural Waffle + 1 ½ tsp. Nutella
5. 2 scoops Ciao Bella Orange Sorbet
6. 14 Quaker True Delights Multigrain Fiber Crisps Wild Blueberry
7. 1 Breyers Smooth & Dreamy Chocolate Covered Strawberry Bar
8. 1 pack Kellogg’s Special K Fruit Crisps + Iced chai tea + ¼ cup fat-free milk
9. ½ cup Edy’s/Dreyer’s Slow Churned Yogurt Blends In Tart Mango + ¼ cup blackberries
10. 4 oz. light yogurt + ½ cup Nature’s Path Crunchy Vanilla Sunrise cereal
11. 1 Breyers Inspirations Natural Vanilla Bean Low fat Yogurt + 1 Mini Nilla Wafer
12. 1 Jell-O Caramel Crème Mousses Temptations + ½ large apple, sliced for dipping
13. 1 pkg. Nabisco 100 Cal Fudge + 1 cup iced coffee with ¼ cup fat-free milk
14. 1 Kashi TLC Fruit & Grain Bar in Dark Chocolate Coconut
15. 1 pkg. Peeled Snacks Much-Ado-About-Mango
16. ½ cup Yogi Granola Crisps (Fresh Strawberry Crunch or Baked Cinnamon Raisin)
17. 10 Barbara’s Snackimals Chocolate Chip Animal Cookies
18. 15 Shale Snacks Cranberry Pecan Biscotti Crisps
19. One 100 Calorie Pack Emerald Cocoa Roast Almonds + 1 Tbsp. Ocean Spray Craisins
20. 1 Kozy Shack Chocolate Hazelnut Pudding + 3 raspberries and 3 strawberries
21. 7 Nabisco Nilla Wafers
22. 1 Starbucks Grande Iced Caffé Latte with Soy Milk
23. 42 Pepperidge Farm Vanilla Grahams Goldfish
24. One 1-oz. pkg. Smartfood Cranberry Almond Popcorn Clusters
25. ½ Cup Blue Bunny Caramel Praline Crunch All-Natural Frozen Yogurt

SAVORY

26. 22 Original Popchips
27. 20 Kettle Brand Baked Potato Chips in Salt & Fresh Ground Pepper
28. 6 oz. Low Sodium V8 Juice + 1 Large hard-boiled egg
29. 1 cup Campbell’s V8 Garden Vegetable Blend Soup
30. 2 Blue Horizon Organic Indian-Style Vegetable Spring Rolls + ¼ cup edamame
31. 3 Daella’s Biscuits for cheese, Hazelnut with Figs + 1 Tbsp Chavrie Original Fresh Goat Cheese
32. 2 Tbsp. Wholly Guacamole Classic + 5 Food Should Taste Good Cheddar Chips
33. 2 John Wm Macy’s WheatSticks in Garlic Romano + 1 wedge The Laughing Cow Light Swiss Cheese
34. 5 Multigrain Food Should Taste Good Chips + 1 low-fat cheese stick
35. 13 Terra Sweet Potato Chips
36. 11 McCain Sweet Potato Crinkle Cut Fries
37. 1 cup McDougall’s Black Bean Soup
38. 7 Beanitos Pinto Bean & Flax Chips + 3 Tbsp salsa
39. 3 Kitchen Tables Bakers Sesame Parmesan Crisps + 1.5 oz. deli ham
40. 7 Snyder’s of Hanover Multigrain Sticks
41. 1 Mini Babybel Light + 3 Ak-Mak Whole Wheat Stone Ground Sesame Crackers
42. ½ Thomas’ 100% Whole Wheat Bagel Thins + 2 tsp. peanut butter
43. 3 Tbsp. Alouette Light Garlic & Herb Cheese + 6 endive leaves and 2 tsp. pine nuts
44. Jolly Time Healthy Pop Butter 100 Calorie Mini bag + 1 Tbsp. grated parmesan cheese
45. 1 small pear + 1 wedge The Laughing Cow Light Blue Cheese
46. 14 SunChips Original Flavor Multigrain Snacks
47. 1 Cabot 50% Light Cheddar Snack Pack + 20 red grapes
48. 3 Tbsp. Sabra Peppadew Hummus + 10 baby carrot
49. 16 Quaker Rice Snacks Cheddar Cheese Quakes
50. 19 Garden of Eatin’ Baked Yellow Chips

ENT Confirmed

I am SUPERWOMAN!

According to my ENT, whom I saw this morning, I have phenomenal hearing despite a 24/7 ringing/buzzing sound in my ears that's also accompanied by an occasional high pitch squeal.

It is also confirmed that my 8 year old is ignoring me. Hmmm...

I was the talk of the office - Perfect hearing, Tinnitus, Devic's Disease, A Medical Marvil. Well, maybe not. But it sounds nice.

I went through a round of hearing tests which wouldn't be complete without the small, metal looking, sound proof room. Any normal human being would go crazy in that thing if they were in there for more than 5 minutes. And with blurred vision, the metal wire looking things covering the walls looked like they were fusing together and closing in on me. Fun!

Something I did learn from this appointment is that I have a pretty bad sinus infection. And not only that, but I'm contagious. Really!? I didn't think sinus infections were contagious, so I turned to my trusty Mr. Know-It-All, Google, and confirmed that it is indeed a spreadable cootie, depending on the circumstances.

I was ordered to limited activity (Yay!) and to take antibiotics for 10 days.

But then I remembered, I have a son at home with pneumonia and a daughter who seems to (just this morning) be coming down with something as well. So for me, taking it easy is not in the cards.

Before Devic's - EEG and VEP

This was originally posted on October 21, 2009 on my other blog. This blog will have a new design before the month is up. Yay! Until then, I'm going to do "Before Devic's" posts just to catch everyone up on how I got here.

Getting ready to start my EEG.

Fake sleeping during EEG. I had to completely relax and keep my eyes closed for 20 minutes.

The aftermath.

So all my tests are done, now I just wait. I wasn't able to get my Radiologist Report today. You have to mail/fax/email a request, they then have 14 days to respond. I'll send the request tomorrow but I'm sure I'll see my Neuro before they get here.

My appointment to go over all tests results is next Thursday, the 29th. Between now and then, I'm just going to chill. These may be my last 8 days of being 'free' of an incurable disease.

Once I get the results, either way they go, I'll share with you after all family members have been told.

Thank you for your support. :)

Before Devic's - Spinal MRI

This was originally posted on October 17, 2009 on my other blog. This blog will have a new design before the month is up. Yay! Until then, I'm going to do "Before Devic's" posts just to catch everyone up on how I got here.


Yesterday was my MRI of the Cervical and Thoracic (sounds like a dinosaur) Spine. It was at a different place then my last MRI because of the Doc change of course. I didn't think it was possible for this MRI to be any louder then the first one but surprise, surprise, this one was.

I went in a 7:30pm with a slight headache. I finished at 9pm with the sound of fog horns ringing in both ears and a massive headache. She gave me ear phones that were playing classical music but really, what's the point? I heard maybe one song throughout the entire hour and a half.

I don't know if I've mentioned this before but I don't handle IV's or getting my blood drawn very well, or in this case the contrast.* For me, it's not the prick or even the feel of the stuff going in that bothers me, it's the thought. I think about a needle hanging out of my arm and blood and....yuck! Anyway, I'm known for passing out.

So the radiologist asks me before I even go in, "How are your veins?" And luckily, they're great! So I tell her that but I also inform her that I don't handle that kind of stuff well and so on. When the time came for the contrast, all was fine until I see what looks like water flying towards my face. I close my eyes and then she quickly asks if I'm alright. "Yes," I say. She then tells me to NOT move my arm no matter what and that she has to go and get some more contrast. Great!

So I'm sitting there, thinking about a needle hanging out of my arm, wondering if I'm bleeding or what's happeneing. Of course I can't see because I have all this padding crap around my head and a metal bridge-looking thing going over my neck. In my mind I'm thinking, "Come on Lady! Hurry it up!" I keep looking at the beautiful (artifical) scenary that's postered on the ceiling panels and trying to think of something else. Anything else.

Finally, what felt like 10 minutes but was probably only 2, she came back. She finished up the contrast, taped the "wound", and sent me back into the tomb of (noisy) death. I hate it when I'm in there. I've only done it twice but with both times, I've been ready to scream right at the moment before they pull me out.

I received a copy of my scans (obviously) and have shared a couple of the clearest pics with you. I'm no doctor but I have a pretty good idea of what I'm looking at. If I'm right, I'm screwed!

* Contrast - Contrast dye is a solution that is used to accentuate specific structures when looking at an image. Injected into your blood vessels. Fun! Fun!

Before Devic's - EEG: In Progress

This was originally posted on June 10, 2009 on my other blog. This blog will have a new design before the month is up. Yay! Until then, I'm going to do "Before Devic's" posts just to catch everyone up on how I got here.

I am officially "wired" for my 72 hour EEG test. It took about an hour and a half to get all 21 wires placed in the proper place on my head. No hair was removed and each wire is taped and glued to insure that it stay's in place. The other end of the wires are attached to a recorder which I have to carry around until they're removed.

Here's the educational portion of this post: An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors electrodes are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity.

Thank you WebMD for that excellent description. The purpose of this test for me, my Neurologist's wants to review my brain activity, particularly when experiencing headaches, migraines, dizziness and a few other symptoms. Luckily, the wires will come off one day before my daughter's 2nd birthday party. Whew!

So above is my before picture. Most of you know what I look like but that is for my newbie's. And also for myself. Just a little reminder that this is only temporary and my lovely locks will soon be flowing again. And below, well, it's obviously the after photo.

Not so hot. That fancy black strap you see is connected to a small fanny-pack-like bag that carries my recorder. I am the hippest chick on the block right now. Watch out California! Sarah's wired and she feels like freakin' people out. Muah-ha-ha-ha-ha!!!! (That was my evil laugh).

It's kind of annoying having people look at you like you're crazy. Rather then crawling into a corner and crying, I'll just stare back at them and maybe make a crazy face and throw my arms in the air. LMAO! In all realness, I have to be pretty chill during this test. It's very sensitive and even a blink is seen on the screen.

Update: Still waiting on my MRI results but once I find something out, I will certainly share.

Before Devic's - Fast Forward

This was originally posted on June 9, 2009 on my other blog. This blog will have a new design before the month is up. Yay! Until then, I'm going to do "Before Devic's" posts just to catch everyone up on how I got here.

Say hello to my brain. "Hello Sarah's brain!" Or part of my brain I guess I should say. And check out that nose. Much smaller when you remove all that cartilage. ;)

Yesterday, I had my first (and hopefully last) Brain MRI. It wasn't that bad but what everyone told me was definitely true. If you're claustrophobic, it's your worst nightmare. Luckily, I am not. I had it with and without contrast and for those of you who don't know what that means, it's basically with an IV and without an IV. The "juice" in the IV is used to show pictures of structures more clearly.

I was able to prepare myself before the procedure by asking lots of questions and talking to people who have been through it before. One obvious bit of advice, No Metal! So I purchased an acrylic tongue ring so my beloved hole in my mouth wouldn't close up while in the machine. :) Mom would be proud. LOL! And I even remembered to bring a sports bra so I would be nice and comfy while my head was being photographed.

However, I didn't notice that the panties I was wearing sported a very tiny metal ring. So there I am, forced to wear the fashionable medical shorts supplied by the facility just in case a situation like mine should arise. The machine was loud and the knocking was extremely annoying but I managed to close my eyes and relax for the 40 or so minutes it took to complete my MRI.

I was able to get a copy of my scans but have yet to hear the results. Tomorrow I go in to get wired for a 72hr EEG. That should produce some interesting posts and pictures. Luckily, this device will be removed before Bean's birthday party this Sunday. Whew!

So here we are. From a "possible MS" comment to a visit with a Neurologist. From Neurologist to being scheduled for 3 or 4 tests. And from there, who know's. Maybe it's good news and maybe it's bad, but all we can do is wait.

Did I mention that the waiting is killer?