About Me

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I'm a glass-half-full type of girl. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010 and life-altering allergies in 2013. I believe having a positive attitude is the only way to live with dis-ease. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Dis-ease is expensive, so I live a frugal yet healthy lifestyle. This is just my blog; my day-to-day story.

Wednesday, January 30, 2013

Everyone's got a solution.

Today while at work, I was forced to make a decision regarding my diabetes. My bg was between 70-80, with .15 units of insulin on board, meaning the bg is going to go down. I'm not hungry, and I'm also trying to cut extra calories (outside of meals) for my weight loss goals.

What do I do? I wonder as I sit at my desk. I know if I don't eat carbs NOW, I'm going to go low. That much is a fact. "Ok, I'll eat. But what? I'm sick of glucose tabs. I have an orange that's unwashed and unpeeled--too much work to go into the kitchen and clean it and peel it right now while I'm trying to work. I'm feeling both ornery and stubborn because I don't feel like eating anything at all. I don't like being bossed around and I feel like diabetes is always bossing me around; making my decisions for me.

As I'm thinking through all of this, my low alarm on the CGM beeps (60). I've waited too long to make my decision. Three grape glucose tabs down the hatch.

My cube neighbor hears the familiar bzzz bzzz of the CGM and pops her head over the wall. "You low?" she asks. "Yep." "Why are you going low every day?" (Me)"I don't know; just how it goes sometimes. It's unpredictable that way." (Her)"You need to eat more sugar so you don't go low."

Sigh. Everyone's got a solution, don't they.

Sunday, January 27, 2013

My Celiabetes Kitchen - Come on in!

My first Vlog! I'm camera shy so this was a HUGE step for me! I have watched several bloggers provide a tour of their kitchen, and I would like to invite you into the kitchen of a celiac type 1 diabetic (dual medical diets), so WELCOME! Please provide feedback. And please considering sharing your kitchen with us, as well! The first video is the intro; the second will begin the tour!


INTRO:



TOUR:



Thursday, January 24, 2013

When you pay the price for being unprepared.

Picture this scenario, which happened just a couple hours ago this evening. I went to my 2nd week appointment for physical therapy. Nearing the end of our session, I began to feel that sweep of wooziness that can only be one thing- low blood sugar. Going against my own better judgment, I decided to wait to check my bg until my appointment was over. Both of my CGMs ‘low alert’ alarms went off (my low alert is set at 60). I didn’t check my blood sugar because I felt it would be a nuisance to check it when I only had 5-10 minutes left of my appointment, and I didn’t want to interrupt her while she was giving me instructions for my at-home exercise homework. After the appointment I walked to the waiting room to get my coat, and sat down and checked my bg, it was 56. I had the one thing you don’t want to see on your CGM when you are low- down arrows. Crappity crap crap.

Talking to myself and trying to relax, I dug through the clutter in my purse for a source of sugar. Juice box? Nope. Candy? Nope. Glucose tabs? Only an empty roll container. How did I forget to refill my glucose tabs? I angrily asked myself. Now what am I gonna do….

The physical therapy clinic was now closed, the front desk people gone. But I remembered that on the first floor of the building I had seen a small novelty shop. I knew that if they weren't already closed (it was after 5pm), they would be closed shortly, since all of the offices inside this building were at the end of their business day. I ran down 2 flights of stairs, shaky from head to toe, knees wobbly in my way-too-high-heeled boots, profusely sweating at the forehead hairline, under arms, back of my neck and under my butt cheeks. I was so sweaty that it felt as if I had wet my pants. I make it inside the little novelty gift shop to find that they only carried a few food items. Now comes the part where it sucks to be a celiac diabetic. I’m trying to read the labels on the few bags of snack items, with shaky eyes that can't focus on the words; trying to determine if any of them are gluten free. None are marked gluten free. Now, if you are diabetic, you know that panicked-feeling that comes over you when you get that low. Everything already seems a little heightened and then when you can’t find a source of food/sugar to help you, you panic even more. I had to make a decision- buy something that I don’t know is gluten free, just to get something to treat the low blood sugar, or try to drive somewhere nearby to a fast food joint to get some soda. Buzz Buzz… the CGMs 55 low alarm is now buzzing, blood sugar in the 40s with down arrows.

My decision was to eat the snacks in the store; there was no way I could drive with that low and I was parked so far away in the parking ramp that I wondered if I’d even make it to my car, walking in high heeled boots with my balance so affected and also with the wind chills being -20 (shivering in the cold drops my blood sugar really quickly).

I found a bag of tater skins from a brand I’d never heard of that said they contain Milk and Soy. I don’t know if they were gluten free, all I knew is that I had to eat something and eat it fast. Obviously fast-acting glucose would have been a better option if it had been available.

After stabbing the bag with a pen to open it, since I couldn’t get it open, I devoured the bag right outside of the store, right there in the hallway. You’ve never seen a chick shovel so many chips in her mouth at one time. Afterwards, I walked to my car and sat there for 20 minutes or so until the low subsided.
The moral of the story is that if you are a celiabetic, you need to be better prepared than I was today. You need to have a gluten-free source of glucose with you at all times, and not rely on the hope that you will always be somewhere convenient that has what you need. I should be doing daily checks to make sure I have glucose in my purse AND in my car; refilling them when I use them up. It’s tough when you have to always be prepared for two diseases. I don’t always get it right.

I’m sitting here now in dry clothes (pajamas), with the hair that frames my face and the back of my neck still wet from the sweat attack. Just praying now that those tater skins were gluten free, so my immune system doesn’t take a nasty hit.

Wednesday, January 23, 2013

Getting to Know You

I stole this from Cherise over at the DSMA's website. I hope you'll get inspired and answer these questions on your blog, so I can get to know you better, too.

1. WERE YOU NAMED AFTER ANYONE?

No.


2. WHEN WAS THE LAST TIME YOU CRIED?

When was the last sad animal abuse commercial on? Other than that, it's been a while. Not sure when.


3. DO YOU LIKE YOUR HANDWRITING?

Yes, I have really interesting handwriting, I've been told.


4. WHAT IS YOUR FAVORITE LUNCH MEAT?


Anything gluten- and nitrate-free! I like Applegate a lot.

5. DO YOU HAVE KIDS?

Not that I'm aware of.


6. IF YOU WERE ANOTHER PERSON, WOULD YOU BE FRIENDS WITH YOU?

Yeah, I would. I'm easy to get along with and I generally like most everybody I meet.


7. DO YOU USE SARCASM A LOT?

Nope, I'm a straight shooter. Just say what it is.



8. DO YOU STILL HAVE YOUR TONSILS?

Yes. They are one of my parts that has always worked!


9. WOULD YOU BUNGEE JUMP?


Never. I'm non-adventurous to a fault.


10. WHAT IS YOUR FAVORITE CEREAL?

I don't eat cereal. It's horrible for you!! It just turns into a pile of sugar in your body!!

11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF?

No. Unless they are too tight and I have to.


12. DO YOU THINK YOU ARE STRONG?

Physical strength, no. Mental strength, incredibly strong. There's nothing I can't handle.


13. WHAT IS YOUR FAVORITE ICE CREAM?

I know I'm strange but I don't really like ice cream. If I do eat any, it's Edy's Peanut Butter Cup. But I'd probably only eat a few bites.


14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE?

I guess their overall appearance; how they put themselves together. I notice details.


15. RED OR PINK?

Pink

16. WHAT IS THE LEAST FAVORITE THING ABOUT YOURSELF?

My fear of being a passenger in a car. I can't relax when I'm riding with someone else. I drive myself crazy.


17. WHO DO YOU MISS THE MOST?

My family, who live out of state.

18. WHAT IS THE TECHNIQUE THAT YOU NEED TO WORK ON THE MOST?

Not drawing conclusions before hearing the entire conversation.

19. WHAT COLOR SHOES ARE YOU WEARING?

I'm barefoot now but earlier I was wearing brown clogs. Which is not smart in the winter.


20. WHAT WAS THE LAST THING YOU ATE?


steak, winter squash and asparagus (dinner)


21. WHAT ARE YOU LISTENING TO RIGHT NOW?


Investigation Discovery TV channel. Somebody's getting murdered I think.


22. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE?


Nude/flesh. It was always my favorite color in the crayon box. I like to blend in.


23. FAVORITE SMELLS?

Bonfire and ironically, toast. And a coffee house.


24. HOW IMPORTANT ARE YOUR POLITICAL VIEWS TO YOU?

Not very.


25. MOUNTAIN HIDEAWAY OR BEACH HOUSE?

Beach house. No question.



26. FAVORITE SPORTS TO WATCH?


None. I don't like watching sports on tv. In person is another story.


27. HAIR COLOR?

blonde. duhhh.



28. EYE COLOR?


blue


29. DO YOU WEAR CONTACTS?

No


30. FAVORITE FOOD?

Pizza (gluten free of course)

31. SCARY MOVIES OR HAPPY ENDINGS?

Happy Endings.


32. LAST MOVIE YOU WATCHED?

On tv: Closer with Jude Law, Clive Owen, Julia Roberts and Natalie Portman. Dark and sexy.


33. WHAT COLOR SHIRT ARE YOU WEARING?

A blue PINK shirt from Victoria's Secret. If you're a chick, that will make sense to you.


34. SUMMER OR WINTER?

Summer. Hands down, Summer.

35. FAVORITE DESSERT?

Caramel flan.

36. STRENGTH TRAINING OR CARDIO?

Right now Cardio, since it's the only thing I can do!


37. COMPUTER OR TELEVISION?

TV. There are some shows I just can't miss and aren't online. I'd miss my blogosphere friends and Tweeps tho.

38. WHAT BOOK ARE YOU READING NOW?

Gone Girl. Almost done with it after putting it down for a while. It's interesting.


39. WHAT IS ON YOUR MOUSE PAD?

Laptop and iPad only.


40. FAVORITE SOUND?

The ocean or a good (but not crazy) thunderstorm with rain

41. FAVORITE GENRE OF MUSIC?

Depends on the mood. There's wind-down music, happy music, etc.

42. WHAT IS THE FARTHEST YOU HAVE BEEN FROM HOME?

Sadly, I've only been as far as Canada and Mexico!

43. DO YOU HAVE A SPECIAL TALENT?

Relating to people. I can talk to anyone about anything.

44. WHERE WERE YOU BORN?

Benton Harbor, Michigan

45. WHERE ARE YOU LIVING NOW?

Minneapolis, Minnesota


46. WHAT COLOR IS YOUR HOUSE?

beige with an awesome red door

47. WHAT COLOR IS YOUR CAR?

bronze


48. DO YOU LIKE ANSWERING 48 QUESTIONS?

Sure.

Tuesday, January 22, 2013

Shout out to another blogger

I would really like to give a shout out over to my friend Stephen at his blog Happy-Medium.net . Stephen is a type 1 diabetic who BRAVELY took on the challenge of eating the diet a person with celiac disease has to follow- a strict, gluten free diet, including watching for cross-contamination risks.

He did his homework, and WOW is he doing a wonderful job. Please go over to his site and check out his day by day chronicle of his eating gluten free experiment.

When he first presented me with the idea, I thought it was great, and I offered to help in anyway possible. I gave him some initial basic information that he would need to begin his gluten free week. If you are curious about the diet, you can certainly ask me, a "seasoned" strict GF celiac, or you can also read Stephen's blog to hear about what it's like to be a brand new celiac who is trying to figure out what to eat. It's very interesting!

I was asked earlier and yes, all wine is gluten free, and there are many gluten free beers available and other drinks. I always refer to an online GF drinks and spirits list to find out what is GF.

Stephen will be embarking on day 3 next, and I'm very excited to read about it! Keep up the good work, Stephen!

Saturday, January 12, 2013

Creating a Disease Binder- Staying Organized.

If you've read my blog in the past, you've probably heard me mention my disease binders and why I think they are a good idea to have. Today I'd like to show you how I put mine together, and encourage you to make one of your own.

It is so essential and beneficial to stay organized when dealing with a chronic illness, whether it is your own or your family member's. If you have more than one member of your family that has a chronic illness, I would keep separate binders for each person. It is also essential to have a binder in the event that something happens to you and someone needs to quickly step in to take care of you. A binder will provide someone with information on who your doctors are for each condition, contact info, latest medical tests and info, etc. It enables someone to step in and pick up where you left off.

Just so you know, I also have a binder for my pet. Yep, I do. So that if something were to happen to me, or if someone needed to watch her for a period of time, they have all of her food info and feeding schedule, her vet contact info as well as where the closest emergency vet location is, my contact information, her age and medical info, pill schedule, and general info on her schedule (like where she likes to sleep and that she cannot go up or down staircases) and behavior info (ex: she doesn't like small children or other dogs).

I've included a lot of information in this post, so go grab a coffee, a water, and a snack, because you're going to be here for a while.

I have one binder designated for type 1 diabetes and grave's disease, and one for celiac disease.

In general, these are the items you will need to put together a disease binder (all can be found at retailers like Walmart and Target or office supply stores):

-a binder (I started with a small one and eventually changed it to a large-ring one). I recommend using one with pockets in the front and back cover.
-tabbed dividers
-clear sheet protectors (to hold articles and small things like notes and business cards)
-3-ring paper hole punch (optional, but certainly helpful to have)

And of course, copies of all of medical information you've received, including medical records or reports, test results (I especially like to keep all of my A1c results so I can look back at them), business cards, notes you've taken, articles you've ripped out, recipes, brochures, insulin pump or CGM information--including a copy of your MOST CURRENT insulin pump settings. Also, mail order RX forms, extra written prescriptions, medical bracelet receipt, travel/fly letter from my doctor, which I get updated once a year and keep on hand, and a list of questions I have for that particular physician the next time I go in, etc.


Let's start with the diabetes and grave's disease binder. You can click on the pictures to make them bigger if the writing is too small for you to read.

You can decorate your cover any way you'd like, but at the very least I'd recommend labeling it.



In the front pocket, I keep small notes and articles. In the front of the binder, I've saved a few articles that I have liked to share with others who want to know more about type 1 diabetes; articles that I think are well-written. I made copies for family members and friends after diagnosis to answer a lot of the questions they had about type 1 diabetes.

Next, I have tabbed dividers for each of the diabetes providers I see or have seen.




In these sections, I have my original diagnosis paperwork, all hospital discharge paperwork, instructions from doctors and CDEs, and any literature that facility has given me that I've found useful (like instructions on how to adjust your basal rates). I also keep copies of all lab work. In a clear sheet protector, I keep small things, like all of the business cards for the providers I see in that health system. I also keep food & activity logs, information from diabetes education classes, and any faxes with the verification page attached. Also keep in here any paperwork that you need to have filled out the next time you go in to that provider, or any paperwork you are supposed to bring back to them. Keeping it here ensures it won't get lost.

A key note I'd like to make is to only keep information that you deem could be useful to you in the future. I don't promote keeping every single piece of paper you are ever given.

Next I have tabs for my sick day plan, my Omnipod insulin pump (including approval letter from insurance and any important correspondence from the pump company, notes from phone calls talking to the company, a copy of my pump therapy orders and instructions for use), and the JDRF's Type 1 Toolkit.




You may want to add additional separate sections for things like if you are in/have been in any medical studies or if you have a "membership" with a glucose meter/test strip company, like Accu-chek or Freestyle. In those tabs I would keep a copy of my "membership" card, so when I inevitably decide to use it I have the information needed to give the pharmacy. And a section on food or carb counting, if it's useful information you would reference.

At the end of the binder is my grave's disease tab. In that section I put diagnosis paperwork, lab results, biopsy results, and information about grave's disease and treatment options, including a brochure on the type of treatment I selected.


I have a separate binder specifically for the Mayo Clinic, since I like to keep all of their stuff together. Their doctors work collaboratively and when I go for an appointment, I bring my binder and can reference things from other Mayo doctors.

Separate from the binders, for small ailments, like regular doctor appointments and such, I just keep a general medical file in the file cabinet. I include in there general diagnosis information, test results, etc.

I also keep separate files for insurance information. I have one hanging file for each year, so I just created my 2013 insurance file. In it, I keep a copy of my insurance renewal verification (should it get lost and I not get added to the system, I have a record that I did, in fact, enroll) and an extra copy of my insurance card (they usually send me two). I also keep copies of all Explanation of Benefits (EOBs), any insurance prior authorization or approval letters (like for getting additional test strips), copies of appeal denials and approvals, basically anything that you don't have an electronic copy of, and also notes I've taken from each call when calling the insurance. On several times, I've used those notes when someone said they would complete something for me, and it never got done, and I call back and they have no record of me having ever spoken to someone. Or maybe that's never happened to you. But I've had it happen several times so I keep detailed notes including the tele# called, the date, time, representative's name, what my questions were, what the answers were, and what follow up that person has agreed to do and by what deadline. I have worked for insurance companies since my early 20's and I HIGHLY recommend doing this. You could certainly keep these items in your binder, as well; just create a separate Insurance tab. It just depends on how you like to organize your topics. I like all my insurance stuff together versus separated out by disease.

I also keep in my 2013 insurance hanging file copies of all FSA dollars spent (each time you use your FSA it should generate a document to be sent to you).

I don't keep these files forever; usually about 2 years, and then they are recycled.

WHEW....

Next up, the celiac binder.

I threw out my old cover page I made for the front of the binder, because I have plans on spiffy-ing it up with some pictures of food and desserts.

So, when you open it:


In the front pockets, I keep brochures, notes, phone numbers of celiac clinics, and business cards.

Under the first tab, I keep articles about celiac disease that I like to share with others, to help them gain a better understanding of this disease. I picked out my favorite articles that were the most well written. I have also used these to make copies and give to people I meet that were recently diagnosed with celiac disease. I've been known to get someone's address that I meet in the grocery store that was recently diagnosed and send them a celiac care package, including copies of these articles for them to read and to share with their friends and family.


Like the diabetes/grave's disease binder, I keep separate tabs for each provider that I've seen for celiac disease. In each section, I keep any lab results, biopsy results, instructions, etc.


I have a separate tabbed section for notes of places/companies I've called to confirm whether a certain product was gluten free. I know this information can change, but I like to know who I've contacted in the past.


I include various miscellaneous tabs, see below. Yours will vary depending on what topics interest you.





I also keep an updated list from our local celiac support group of restaurants in the area with gluten free menus.



And lastly, a section on celiac nutrition therapy


You could add additional sections for any celiac support groups you are a member of, or a section for recipes you like.

I now only go to the Mayo Clinic- Celiac Clinic for treatment and follow up, and all of those test results, biopsy info etc. is all kept in my Mayo Clinic binder.

I hope this information helps you and prompts you to make a binder of your own. Life is busy; make things easier for yourself (and for loved ones who may need to care for you later) by staying organized. Feel free to contact me if you need any guidance or suggestions with starting up your binder!








Monday, January 7, 2013

Good Overload.

It was like Christmas last Friday. In one day, my iPad 3 finally got delivered to Best Buy for pickup,

I'm officially "cool" now. Lol.

Also, this was on my doorstep:


A three month supply of my Pods! Woo hoo! I was down to just one left.

And lastly on Friday, I went to the pharmacy to pick up all my D-supplies/refills. The pharmacist told me I was picking up my "Diabetes Party Pack." Haha. It feels good to have enough supplies for a change. This is my 2013 FSA dollars hard at work:


It was a good day.

Saturday was a fun day, too. I went to the Science Museum and watched Tornado Alley at the Omnitheatre. Nothing like seeing a real tornado up close and in 3D. For those of you who watched Storm Chasers on Discovery Channel, you'll know what the TIV is. The TIV was on display at the museum! It was very interesting.




The only stressful part of the day was trying to find something to eat at the museum. They have a few food joints, but unfortunately not ONE person at any of them had ever heard of gluten and could not tell me if anything was safe. So I was stuck eating my KIND granola bar in my purse for a meal. It's hard sometimes to see and smell all the delicious food but not able to partake in it with your friends. What I wouldn't have given to have sunk my teeth into one of those yummy giant pretzels with cheese sauce! Oh well, still had an awesome time.

I don't know about you, but I'm super glad the holidays are over. Way too much emphasis on food, which is not always a good time for a person with 2 diseases that are affected by food. No more stressing about food until Easter :)

I thought this week I'd share with you my disease binders. I'm a big fan of creating binders for each of your illnesses to keep track of everything from test results, travel letters, extra written prescriptions, my personal notes, insurance stuff, A1c tracking, and recipes. I have one for diabetes and one for celiac disease. I'll be taking pictures of them or may just do a vlog if it's easier, to show you how I put mine together. They have come in handy so many times! More to come on that.

This Wednesday I have a follow up for my spinal cord. I'm always nervous about these appointments; I just want to hear that everything's still 'looking good' and progressing on plan. The sooner I heal, the sooner I can start incorporating exercise again. I don't know how I'm going to make it to October without exercising...

Tuesday, January 1, 2013

Overbooked and loving it.

It's been a little while since I last posted. The holidays were fun and busy. In addition to the usual frenzy associated with the holidays, I also worked overtime for two weeks straight, which meant being at work an hour earlier in the morning, staying after work a little longer, and working weekends. It was all voluntary, and I ate up every opportunity since I've got medical bills I'm working really hard to pay off. Luckily for 2013, I put enough money in my FSA to cover my out-of-pocket expenses for medical and prescriptions. WHAT-- there's a chance this year that I might have a few spare dollars in my bank account???? Miracles can happen!!

Speaking of miracles, I've seen so many good things happen in my life. Maybe little things, but no less a blessing. The overtime was a much-needed blessing. Also, I ran out of Omnipods (my pump supplies) and couldn't refill until January 1. Panicked and with no other way to get insulin (if you remember, I can't do shots), I prayed and prayed for a miracle. And that miracle came when my *awesome* diabetes educator was able to give me 3 extra pods to hold me over until I could refill my prescription. Can I get a hallelujah. Another miracle was when I actually won something! ME- winning something! I entered a contest for gluten-free blogger (and former Bachelor/Bachelor Pad contestant) Tenley Molzahn (website) and won 3rd prize, which was a work out video that I REALLY wanted when it came out this summer. It's from my favorite trainers at Tone It Up (website). I was extremely excited when I got an email from her. Another small miracle was when Suite D, the Omnipod blog, contacted me and asked me to be a contributor, discussing the unique perspective of a diabetic with celiac disease. I can't wait for that and will keep you posted as I know more. And lastly, I was asked by Jen from TheIronJen to attend her financial seminar as her guest next week! A huge value! I got the privilege of meeting this great woman a few months back and she is so inspiring. You feel full of energy after talking with her. She is a Type 3- her young son has type 1 diabetes and wears an Omnipod like me!

Life is really good right now. I don't want to keep the pace of always being so busy, but right now I'm really enjoying it. Just another example of how a broke-off-your-butt, single person with health conditions can have a fabulous life on so little. Like I always say, life doesn't have to be *perfect* to be wonderful!