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.
Wednesday, January 30, 2013
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:
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.
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.
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!
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!
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...
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!
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!
Wednesday, December 12, 2012
Google Yourself.
I have a really good piece of advice for you. Google yourself. Google your name, google your email address(es), see what comes up. It might surprise you.
I google myself every couple months to see what shows up. I don't like it when websites post my home address or info like that, and if I see it show up, I email them and ask them to remove me from their site, which they always do.
It's also funny to find out that others have the same name as you and interesting stuff comes up. Tonight I found out that a porn star shares my first and last name. THAT was interesting.
What was also interesting when I googled my name is that I found a link to a book that my story is going to be in: http://books.google.com/books?id=7E9sFW2eBZMC&pg=PT234&lpg=PT234&dq=nikki+coar&source=bl&ots=1sTwgsPnfr&sig=qp2d3vjoIt3T3TXaCdfT_2DSKeA&hl=en&sa=X&ei=Sy7JUOiTPKaoywHIzID4DA&ved=0CEQQ6AEwBA
Only parts of the story are shown. I can't wait to see the whole story when the book comes out. And I can't wait to read about other's stories. It's a book about eating well with diabetes, but I contribute how to eat with diabetes AND celiac. When you have both it can be a little challenging.
Pretty cool!!
Sorry this is short. I just finished the tweetchat on #dsma tonight. I get so pumped talking with others with D; it's pretty awesome.
More tomorrow...
I google myself every couple months to see what shows up. I don't like it when websites post my home address or info like that, and if I see it show up, I email them and ask them to remove me from their site, which they always do.
It's also funny to find out that others have the same name as you and interesting stuff comes up. Tonight I found out that a porn star shares my first and last name. THAT was interesting.
What was also interesting when I googled my name is that I found a link to a book that my story is going to be in: http://books.google.com/books?id=7E9sFW2eBZMC&pg=PT234&lpg=PT234&dq=nikki+coar&source=bl&ots=1sTwgsPnfr&sig=qp2d3vjoIt3T3TXaCdfT_2DSKeA&hl=en&sa=X&ei=Sy7JUOiTPKaoywHIzID4DA&ved=0CEQQ6AEwBA
Only parts of the story are shown. I can't wait to see the whole story when the book comes out. And I can't wait to read about other's stories. It's a book about eating well with diabetes, but I contribute how to eat with diabetes AND celiac. When you have both it can be a little challenging.
Pretty cool!!
Sorry this is short. I just finished the tweetchat on #dsma tonight. I get so pumped talking with others with D; it's pretty awesome.
More tomorrow...
Sunday, December 2, 2012
Dating with disease.
Yes it's late and yes I should be in bed right now deep in a slumber in preparation for tomorrow's workday but I just can't sleep. I just finished watching this Hallmark Channel Christmas movie that I recorded earlier and it's put some questions in my head. While I must admit that these movies shamelessly bring me joy, the one I watched today got me to thinking about something.
In one part of the movie, a man (presumably in his late 20s/early 30s)is trying to find his perfect match and finds a girl he thinks is cute but he finds out she is vegan and decides not to ask her out because as he put it "where could I ever take her out to eat? Too much work." and moves on to the next girl. Anyways, I felt this twinge in my stomach because I believe his feelings and his statement ring true- that perhaps a woman with "food issues" IS too much work and not worth pursuing. I wonder if that is how others perceive me? Do my "food issues" due to celiac disease and type 1 diabetes take me out of the running? Will no man pursue a lifelong commitment with me because of these things? I know I've brought up my questions about being loved as someone with medical conditions in a previous blog where I blatantly wondered if I could be considered lovable.
This all stems from my own embarrassment/insecurity from having these illnesses, and recognizing the hassle they will cause the person I could have a relationship with and/or marry someday, even though I know these diagnoses are not my fault but still I feel a little like damaged goods. And watching that scene in the Hallmark Channel movie made me think that even more! Why would they joke about it if it weren't true?
I'm just beginning to believe that finding a person who will see past my diseases, or "food issues" is just not a big possibility.
At least I have my dog and she loves me no matter what <3
Thoughts/opinions? I would really appreciate everyone's raw thoughts on this.
In one part of the movie, a man (presumably in his late 20s/early 30s)is trying to find his perfect match and finds a girl he thinks is cute but he finds out she is vegan and decides not to ask her out because as he put it "where could I ever take her out to eat? Too much work." and moves on to the next girl. Anyways, I felt this twinge in my stomach because I believe his feelings and his statement ring true- that perhaps a woman with "food issues" IS too much work and not worth pursuing. I wonder if that is how others perceive me? Do my "food issues" due to celiac disease and type 1 diabetes take me out of the running? Will no man pursue a lifelong commitment with me because of these things? I know I've brought up my questions about being loved as someone with medical conditions in a previous blog where I blatantly wondered if I could be considered lovable.
This all stems from my own embarrassment/insecurity from having these illnesses, and recognizing the hassle they will cause the person I could have a relationship with and/or marry someday, even though I know these diagnoses are not my fault but still I feel a little like damaged goods. And watching that scene in the Hallmark Channel movie made me think that even more! Why would they joke about it if it weren't true?
I'm just beginning to believe that finding a person who will see past my diseases, or "food issues" is just not a big possibility.
At least I have my dog and she loves me no matter what <3
Thoughts/opinions? I would really appreciate everyone's raw thoughts on this.
Sunday Funday.
Well Thanksgiving is over and it's now 'Tis the season. Today I joined a gym so that I can walk on the treadmill; the only exercise I have permission to do. It's cold here in Minnesota; there won't be any walking outside for this girl.
Last week I had blood work for my endo appt. All my numbers were great, including my cholesterol which is a blessing considered last time it was checked it was really high. I've never had high cholesterol in my life but then in the last 6 months I had this crazy idea to go on an egg diet where I basically ate eggs all day every day (protein) and the blood work showed my stupidity. My doctor asked "what happened in the last few months" and I told him about my egg idea and he put the kabash on that straight away. Put me on a limit of 2 egg yolks a week (unlimited egg whites) and voila, my cholesterol is back to being very low.
A couple of numbers didn't come back awesome- my white blood cell count and my thyroid test. No big deal tho; a tweak to my thyroid medication should take care of both of those issues.
But the number I always dread is the A1c. I knew it wouldn't be great because after my spinal cord repair let's just say that keeping my blood sugar in line wasn't exactly a priority. My A1c went up .4, from the previous 6.3 to now 6.7. Not horrible but still a disappointment because I have this goal of getting it down to 6 or lower. I guess I want it that low because then I feel I have a "cushion" for when things go awry (like spinal cord surgery!) and it goes up. But if you are already starting a little higher, then it doesn't give as much of a cushion for it to go up and be in a range that I feel happy with.
The other number that needs a little work is my weight. My forced sedentary lifestyle put some extra fat on me and I am on a mission to get rid of the extra weight by the end of the year or at least by the end of January. My goal weight is 118. That is where I look and feel my best. I'm 125 now so I think a 7 lb goal is attainable. I'm very small boned and a small amount of added weight on me gives me a muffin top AND a double chin. I know that sounds ridiculous but after some recent pictures taken of me I almost fell off my chair. I looked horrible. Everyone has a weight that they look (and feel) their best and mine is 118-ish.
I started the Paleo way of eating last week and so far it's been great. It's not a big change from how I was eating prior, except that it cuts out grains. I can't say I'll never eat grains again but after reading a lot on the Paleo's claims that grains cause inflammation and a host of other issues, I'm curious to see if I feel a difference when not eating them. So it's more of an experiment for me. If I don't feel different after about 2 months, I will reincorporate healthy grains back into my diet. I thought now would be a good time so then I won't feel as left out at the holidays when I can't eat any cookies or pies. Having celiac disease sort of ruined the holiday eating for me, so at least eating Paleo I can pretend THAT is the reason I'm not eating any of those beautiful desserts that are around me during the month of December.
Last night I went to the natural food co-op and ended up introducing myself to someone in the freezer aisle that I could tell was struggling with making a decision on a gluten free bread selection. I seem to always end up doing this when I go to this store; it seems to be a haven for celiacs, especially that frozen food aisle where all the GF frozen goods are. I like helping people and after her and I talked for a while, I found out that she, her 3 kids, her brother and her brother's daughter all have celiac disease. One of her children becomes violently ill when he ingests gluten and must be hospitalized. I suggested that she take advantage of the Mayo Clinic's Celiac Clinic right here in Minnesota, where they offer top-notch care and cutting edge research for celiac disease. We are so lucky to have the Mayo Clinic just one hour away. What a blessing that is.
I was up early today because as you know Sunday's are my chop & prep days for food for the week. I'll be making a chicken curry dish in the crock pot (from a paleo cookbook), chopping up lots of veggies for snacks, cleaning chicken for a chicken stir fry later in the week and chopping up lettuce for salads. Oh and of course I need to boil about a dozen eggs to have on hand for last minute breakfasts or snacks. And yes, I'm only eating the egg whites :)
Then back to the weekly grind tomorrow...
Last week I had blood work for my endo appt. All my numbers were great, including my cholesterol which is a blessing considered last time it was checked it was really high. I've never had high cholesterol in my life but then in the last 6 months I had this crazy idea to go on an egg diet where I basically ate eggs all day every day (protein) and the blood work showed my stupidity. My doctor asked "what happened in the last few months" and I told him about my egg idea and he put the kabash on that straight away. Put me on a limit of 2 egg yolks a week (unlimited egg whites) and voila, my cholesterol is back to being very low.
A couple of numbers didn't come back awesome- my white blood cell count and my thyroid test. No big deal tho; a tweak to my thyroid medication should take care of both of those issues.
But the number I always dread is the A1c. I knew it wouldn't be great because after my spinal cord repair let's just say that keeping my blood sugar in line wasn't exactly a priority. My A1c went up .4, from the previous 6.3 to now 6.7. Not horrible but still a disappointment because I have this goal of getting it down to 6 or lower. I guess I want it that low because then I feel I have a "cushion" for when things go awry (like spinal cord surgery!) and it goes up. But if you are already starting a little higher, then it doesn't give as much of a cushion for it to go up and be in a range that I feel happy with.
The other number that needs a little work is my weight. My forced sedentary lifestyle put some extra fat on me and I am on a mission to get rid of the extra weight by the end of the year or at least by the end of January. My goal weight is 118. That is where I look and feel my best. I'm 125 now so I think a 7 lb goal is attainable. I'm very small boned and a small amount of added weight on me gives me a muffin top AND a double chin. I know that sounds ridiculous but after some recent pictures taken of me I almost fell off my chair. I looked horrible. Everyone has a weight that they look (and feel) their best and mine is 118-ish.
I started the Paleo way of eating last week and so far it's been great. It's not a big change from how I was eating prior, except that it cuts out grains. I can't say I'll never eat grains again but after reading a lot on the Paleo's claims that grains cause inflammation and a host of other issues, I'm curious to see if I feel a difference when not eating them. So it's more of an experiment for me. If I don't feel different after about 2 months, I will reincorporate healthy grains back into my diet. I thought now would be a good time so then I won't feel as left out at the holidays when I can't eat any cookies or pies. Having celiac disease sort of ruined the holiday eating for me, so at least eating Paleo I can pretend THAT is the reason I'm not eating any of those beautiful desserts that are around me during the month of December.
Last night I went to the natural food co-op and ended up introducing myself to someone in the freezer aisle that I could tell was struggling with making a decision on a gluten free bread selection. I seem to always end up doing this when I go to this store; it seems to be a haven for celiacs, especially that frozen food aisle where all the GF frozen goods are. I like helping people and after her and I talked for a while, I found out that she, her 3 kids, her brother and her brother's daughter all have celiac disease. One of her children becomes violently ill when he ingests gluten and must be hospitalized. I suggested that she take advantage of the Mayo Clinic's Celiac Clinic right here in Minnesota, where they offer top-notch care and cutting edge research for celiac disease. We are so lucky to have the Mayo Clinic just one hour away. What a blessing that is.
I was up early today because as you know Sunday's are my chop & prep days for food for the week. I'll be making a chicken curry dish in the crock pot (from a paleo cookbook), chopping up lots of veggies for snacks, cleaning chicken for a chicken stir fry later in the week and chopping up lettuce for salads. Oh and of course I need to boil about a dozen eggs to have on hand for last minute breakfasts or snacks. And yes, I'm only eating the egg whites :)
Then back to the weekly grind tomorrow...
Tuesday, November 20, 2012
A letter to my Dexcom 7.
Dear Dexcom 7,
I just wanted to thank you for keeping me up all night. It must be nice to stay up all night partying and being loud, and then get to sleep in and not function properly until 11:19am this morning. I wish I could stay up all night and then sleep in, but unfortunately one of us needs to go to work so we can pay the bills.
Thank you for the 2am, 3am and 3:30am fake warnings of high blood sugars, for saying I was 221 when in actuality I was 79 and later 98. Thanks for waking the dog up so I had to take her to go potty at 2 in the morning.
Thanks for the ERR1 message you gave me this morning at work- twice. In case no one else knew you weren't working properly, you made it known by beeping as loud as you could in my cubicle.
I also want to thank you for putzing out on me at only 3 days old. You are supposed to last a week, you jerk.
You just wait until January when I can afford to replace you with the G4; we'll see who's laughing then.
I just wanted to thank you for keeping me up all night. It must be nice to stay up all night partying and being loud, and then get to sleep in and not function properly until 11:19am this morning. I wish I could stay up all night and then sleep in, but unfortunately one of us needs to go to work so we can pay the bills.
Thank you for the 2am, 3am and 3:30am fake warnings of high blood sugars, for saying I was 221 when in actuality I was 79 and later 98. Thanks for waking the dog up so I had to take her to go potty at 2 in the morning.
Thanks for the ERR1 message you gave me this morning at work- twice. In case no one else knew you weren't working properly, you made it known by beeping as loud as you could in my cubicle.
I also want to thank you for putzing out on me at only 3 days old. You are supposed to last a week, you jerk.
You just wait until January when I can afford to replace you with the G4; we'll see who's laughing then.
Friday, November 16, 2012
A disease hypothetical question?
There are questions about my diabetes and celiac disease that I inevitably get asked.
When people ask you how "your diabetes is going," how do you answer? When someone new finds out I have diabetes, I am ready for three questions that inevitably follow- the first question usually involves the amount of time I've had it ("did you get it as a kid? how long have you had it?"). The 2nd question evolves around diagnosis ("how did you know you had it?" "what were your symptoms?" "does it run in your family?") and the third question is always the one I dread the most- it evolves around how my diabetes is being managed ("how's the diabetes going?" "is it well managed?"). When people ask that, especially someone you don't know well, how do you answer? Do you give them the dirty low down details? Do you breeze over the question altogether? There's this balance I always want to strike when answering that question; I want people to know the level of dedication it takes to manage this disease, but I don't want to terrorize them, either. I feel in the past, I've done both. I've sometimes glossed over the question with an answer like "Oh, it's going fine" and other times I have given TMI and you can see the confusion/horror on their face. So then I realize I wonder if that 3rd question is actually just a hypothetical question, to be polite? Maybe it's a question like "How are you doing?" The type of question that people don't realllly want to know that you just got dumped, your dog is sick, your car broke down, fill in the blank, etc. They just want you to say "I'm doing fine, thanks for asking," so they can move on to their next task. And then there's the task of deciphering who wants the details and who doesn't. I'm guessing the sales clerk at Macy's didn't want to know about your blood sugar issues when she asked you how your day was going.
I was asked this question by my manager when I told her I had diabetes a few weeks back. I wasn't sure how to answer- I didn't want to scare her with details that might make her think I was going to be a "problem" employee, but I also didn't want her to think it was a breeze and would never interfere with my work. Taken off guard, I think I leaned toward the side of having her believe it would never be a problem, out of fear of being a new employee and worried what she would think of me. Diabetes makes me very self-conscious.
I wish I didn't care what people thought. I wish their assumptions didn't hurt. I wish I had a disease I could keep to myself and not tell anyone about. But that is not the case.
Usually my celiac disease diagnosis is a little easier to hide, at least from strangers. People won't usually find out about it until there is a food-related event, and even then sometimes you can get away with not mentioning it if you don't want to. Until you go out to a restaurant and grill the poor waiter about ingredients, food handling and cross contamination. Celiac disease is difficult to answer questions about. The hardest question I get is "What happens when you eat it?" The reason that I don't enjoy answering this question is because there is no polite way to describe the digestive symptoms it causes. I'm not one to blurt out to strangers "Oh, it gives me the scoots." Nothing like telling a stranger about your bloating, diarrhea and gas problems. I try to glaze over the gross parts and focus about the damage it causes to my small intestine.
At the same time, when I am asked questions about one of my diseases, I don't want to miss an opportunity to educate someone and give them the CORRECT information about the disease, versus the stereotypes they'll likely hear later.
When people ask you how "your diabetes is going," how do you answer? When someone new finds out I have diabetes, I am ready for three questions that inevitably follow- the first question usually involves the amount of time I've had it ("did you get it as a kid? how long have you had it?"). The 2nd question evolves around diagnosis ("how did you know you had it?" "what were your symptoms?" "does it run in your family?") and the third question is always the one I dread the most- it evolves around how my diabetes is being managed ("how's the diabetes going?" "is it well managed?"). When people ask that, especially someone you don't know well, how do you answer? Do you give them the dirty low down details? Do you breeze over the question altogether? There's this balance I always want to strike when answering that question; I want people to know the level of dedication it takes to manage this disease, but I don't want to terrorize them, either. I feel in the past, I've done both. I've sometimes glossed over the question with an answer like "Oh, it's going fine" and other times I have given TMI and you can see the confusion/horror on their face. So then I realize I wonder if that 3rd question is actually just a hypothetical question, to be polite? Maybe it's a question like "How are you doing?" The type of question that people don't realllly want to know that you just got dumped, your dog is sick, your car broke down, fill in the blank, etc. They just want you to say "I'm doing fine, thanks for asking," so they can move on to their next task. And then there's the task of deciphering who wants the details and who doesn't. I'm guessing the sales clerk at Macy's didn't want to know about your blood sugar issues when she asked you how your day was going.
I was asked this question by my manager when I told her I had diabetes a few weeks back. I wasn't sure how to answer- I didn't want to scare her with details that might make her think I was going to be a "problem" employee, but I also didn't want her to think it was a breeze and would never interfere with my work. Taken off guard, I think I leaned toward the side of having her believe it would never be a problem, out of fear of being a new employee and worried what she would think of me. Diabetes makes me very self-conscious.
I wish I didn't care what people thought. I wish their assumptions didn't hurt. I wish I had a disease I could keep to myself and not tell anyone about. But that is not the case.
Usually my celiac disease diagnosis is a little easier to hide, at least from strangers. People won't usually find out about it until there is a food-related event, and even then sometimes you can get away with not mentioning it if you don't want to. Until you go out to a restaurant and grill the poor waiter about ingredients, food handling and cross contamination. Celiac disease is difficult to answer questions about. The hardest question I get is "What happens when you eat it?" The reason that I don't enjoy answering this question is because there is no polite way to describe the digestive symptoms it causes. I'm not one to blurt out to strangers "Oh, it gives me the scoots." Nothing like telling a stranger about your bloating, diarrhea and gas problems. I try to glaze over the gross parts and focus about the damage it causes to my small intestine.
At the same time, when I am asked questions about one of my diseases, I don't want to miss an opportunity to educate someone and give them the CORRECT information about the disease, versus the stereotypes they'll likely hear later.
Sunday, November 11, 2012
Reducing Risk.
It's Sunday afternoon and not a normal time for me to write a blog. This time of day usually involves chopping, cooking, laundry. I have been doing some of that today, but not much because I'm trying to rest up my back in preparation for another long week. I just thought I'd take a coffee and gluten free scone break from my house chores.
Last night I completed my grocery shopping for food prep today. I went later in the evening on purpose, to avoid the daytime shoppers that pack up the stores. I also prefer to go when there is less traffic on the road. Since my spinal cord injury in July, I have been very scared of being on the road; scared that someone is going to rear-end me. The words from my surgeon ruminate in my mind; that if I were to get into even a minor accident, I could end up with quadriplegia. Quadriplegia occurs when there is injury to the spinal cord in any part between the C4-C7 cervical area. My spinal cord was damaged in the C5-C6 and C6-C7 region, with minor damage in the C4 area that they chose not to fix at the same time as the others (there is risk that a multi-level fusion would not be successful). The 12-15 months is how long it takes for my bones to fuse with the cadaver bones. Until then, what's holding me together are screws on the inside and outside of my spinal cord (see 2nd picture, below). So I am supposed to be really careful for the next year or so and is why I have a long list of restricted movements and activities. Here's a picture I found online that better explains the regions:
photo credit TexasTrialLawyer.com
Since I don't have a picture of my own xray, I found one online that looks just like mine:
photo credit boneandjoint.org.uk
The truth is, I'm scared of being being paralyzed from the neck down. What would that mean to a t1 diabetic like myself? It would mean not being able to poke my own fingers to check my blood sugar, not being able to treat a low on my own, and possibly not having the ability to feel a low due to paralysis. It would mean requiring 24 hour a day care, because of the risk of low blood sugar. It could mean living in a facility due to the special circumstances of type 1 diabetes and needing someone to be available to help me treat my diabetes at any time of the day or night. While I know that many quadriplegic patients may live with a level of independence, I don't think a type 1 diabetic would have that option. And that fear haunts me when I'm driving and I see a car behind me not slowing down fast enough.
I've purposely chosen my work schedule in order to avoid rush hour traffic. I don't drive during rush hour, period. I try to do everything locally and avoid the main highways, which seem to be featured on the morning and evening news everyday for accidents. I'm just simply trying to reduce my risk. I don't text and drive and I rarely talk and drive either. I see too many cars swerving around in their lanes only to see when I pass them that they are texting and not watching the road. I don't want someone who is texting behind me on the road because if I have to slam on my brakes for some reason, they will not be paying attention and run into me. We live in a different world now with cell phones and GPS systems. People are reading their texts, texting back, dialing, or looking at the map/directions on their phone. What they aren't looking at are the brake lights in front of them.
Maybe I'm paranoid, I'm not saying I'm not. But I have a lot to lose and I'd rather be overly cautious than not cautious enough.
Last night I completed my grocery shopping for food prep today. I went later in the evening on purpose, to avoid the daytime shoppers that pack up the stores. I also prefer to go when there is less traffic on the road. Since my spinal cord injury in July, I have been very scared of being on the road; scared that someone is going to rear-end me. The words from my surgeon ruminate in my mind; that if I were to get into even a minor accident, I could end up with quadriplegia. Quadriplegia occurs when there is injury to the spinal cord in any part between the C4-C7 cervical area. My spinal cord was damaged in the C5-C6 and C6-C7 region, with minor damage in the C4 area that they chose not to fix at the same time as the others (there is risk that a multi-level fusion would not be successful). The 12-15 months is how long it takes for my bones to fuse with the cadaver bones. Until then, what's holding me together are screws on the inside and outside of my spinal cord (see 2nd picture, below). So I am supposed to be really careful for the next year or so and is why I have a long list of restricted movements and activities. Here's a picture I found online that better explains the regions:
Since I don't have a picture of my own xray, I found one online that looks just like mine:
The truth is, I'm scared of being being paralyzed from the neck down. What would that mean to a t1 diabetic like myself? It would mean not being able to poke my own fingers to check my blood sugar, not being able to treat a low on my own, and possibly not having the ability to feel a low due to paralysis. It would mean requiring 24 hour a day care, because of the risk of low blood sugar. It could mean living in a facility due to the special circumstances of type 1 diabetes and needing someone to be available to help me treat my diabetes at any time of the day or night. While I know that many quadriplegic patients may live with a level of independence, I don't think a type 1 diabetic would have that option. And that fear haunts me when I'm driving and I see a car behind me not slowing down fast enough.
I've purposely chosen my work schedule in order to avoid rush hour traffic. I don't drive during rush hour, period. I try to do everything locally and avoid the main highways, which seem to be featured on the morning and evening news everyday for accidents. I'm just simply trying to reduce my risk. I don't text and drive and I rarely talk and drive either. I see too many cars swerving around in their lanes only to see when I pass them that they are texting and not watching the road. I don't want someone who is texting behind me on the road because if I have to slam on my brakes for some reason, they will not be paying attention and run into me. We live in a different world now with cell phones and GPS systems. People are reading their texts, texting back, dialing, or looking at the map/directions on their phone. What they aren't looking at are the brake lights in front of them.
Maybe I'm paranoid, I'm not saying I'm not. But I have a lot to lose and I'd rather be overly cautious than not cautious enough.
Thursday, November 8, 2012
Needed: Rest.
Glad this week is almost OH-VER. I haven't slept well most of the week and my back has been hurting, which scares me A LOT. It hurts in the surgical site area, and I think it's from the constant sitting in one position at work. I can't get comfortable at work, with my arms out in front of me typing all day. I keep repositioning myself to find a comfy spot and I can't find it. My boss doesn't know about my spinal cord surgery, and I'm not sure how much she (or any boss) would be willing to accommodate a brand-new employee for yet another medical condition. She already knows about the diabetes and the celiac disease. I just hate feeling like the problem employee. I don't want her to think "great, what have I hired." I am afraid to call my surgeon's office because I'm afraid they will recommend working a reduced work week, to work my way back into working full time. But I can't afford that. And I know for a fact my new job will not accommodate that because they have already stated the company does not hire part-time employees. So I'm planning a weekend of complete and total rest, preferably spent on my back. During the week I'm going to have do try to do less work at home after work (cleaning, cooking, laundry, errands) and focus on rest rest resting my back. I'm so scared one of my health conditions is going to jeopardize my work.
So tonight I made a yummy gluten free meals that I hope will last me through the entire weekend. I had a 2 1/2 lb container of ground turkey from Sam's Club that I thawed but had not made a plan for, so I flipped through my recipes and decided to make Confetti Turkey Loaf before it spoiled. It's very healthy and tasty. That took up 1 1/2 lbs; the remaining pound I used to make a batch of Manwich sloppy joe mix (less healthy, but easy). Then I baked 5 sweet potatoes in the toaster oven.
Here's the quick version of how to make the turkey loaf. Saute onions and peppers in a pan with a teeny amount of oil, then dump in a big mixing bowl. Add 1 1/2 lbs ground turkey, 2 eggs, a chopped up carrot, fennel seed, salt and pepper. Mix it up.
Make 1 cup of cook wild rice (I made it in the rice cooker). Soak the cooked rice in 1/2 cup canned coconut milk for about 5 minutes.
Add it to the turkey/vegetable mix. Throw it in a greased loaf pan. Bake for a hour.
Before
After
Thanks for listening to me this week. I've had a bad week. Between the nightmares and stress, a $4000 medical bill for uncovered services during my spinal cord surgery, and now my surgical area causing me a lot of pain, I'm ready for the weekend.
So tonight I made a yummy gluten free meals that I hope will last me through the entire weekend. I had a 2 1/2 lb container of ground turkey from Sam's Club that I thawed but had not made a plan for, so I flipped through my recipes and decided to make Confetti Turkey Loaf before it spoiled. It's very healthy and tasty. That took up 1 1/2 lbs; the remaining pound I used to make a batch of Manwich sloppy joe mix (less healthy, but easy). Then I baked 5 sweet potatoes in the toaster oven.
Here's the quick version of how to make the turkey loaf. Saute onions and peppers in a pan with a teeny amount of oil, then dump in a big mixing bowl. Add 1 1/2 lbs ground turkey, 2 eggs, a chopped up carrot, fennel seed, salt and pepper. Mix it up.
Make 1 cup of cook wild rice (I made it in the rice cooker). Soak the cooked rice in 1/2 cup canned coconut milk for about 5 minutes.
Add it to the turkey/vegetable mix. Throw it in a greased loaf pan. Bake for a hour.
Before
After
Thanks for listening to me this week. I've had a bad week. Between the nightmares and stress, a $4000 medical bill for uncovered services during my spinal cord surgery, and now my surgical area causing me a lot of pain, I'm ready for the weekend.
Decisions, in pictures.
What I wanted to eat for supper.
Then I saw this (notice the 6 hour trending)
So I ate this instead
What I thought I probably should have had for supper
Then I saw this (notice the 6 hour trending)
So I ate this instead
What I thought I probably should have had for supper
Monday, November 5, 2012
Haven't really talked about this before.
I've been sitting here for a while thinking Should I publish this? Should I not publish this? I don't know why I'm hesitant to talk about this when I've shared so many things.
I'm struggling a bit with an old demon. Night terrors. My nightmares have been coming back and as such, are preventing me from sleeping soundly throughout the night and have also made me dread bedtime. I haven't really talked much about this, but in 2010 I was diagnosed with PTSD after being diagnosed with type 1 diabetes, grave's disease and celiac disease. I experienced a lot of trauma from the multiple life-changing illnesses and being extremely ill for most of the year 2010. In addition to the night terrors, I lost my appetite, I cut myself off from all my friends and family, not even a phone call here and there. I lived with so much fear that I felt like I was going crazy. I rarely left my house and for almost 9 straight months I cried every single day. It's hard to explain without sounding exaggerated, but after the 3rd autoimmune disease diagnosis in a 5 month period and a 2nd unsuccessful heart surgery to correct a heart condition, I lost my ability to sleep, to concentrate, to live normally. That's when the nightmares began; vivid dreams that seemed so real that in my dream I'd tell myself I was just dreaming, but then right after would think oh my gosh I'm NOT dreaming- this is actually HAPPENING. (It wasn't). I had nightmares that ranged from having snakes in my bed, attackers in my house, having my heart stop and tons and tons of dreams that my blood sugar was low while being physically unable to treat it. I dreamed that I was always dying in some way, whether it was someone killing me in my house, chasing me down and killing me, or dying from one of my many medical conditions. In my dreams, I was always alone where no one could save me or find me; where no one was ever around to help me, which is much how I felt in real life, that no one could save me from all the diseases that had plagued me.
The doctor put me on sleeping medication to help me get some much needed sleep. After about a year and a half, things started to improve enough where I wasn't taking the sleeping medication, but since the spinal cord injury diagnosis in July, the nightmares are back and I just can't shake them. I did try counseling but found it too slow of a pace to work. One hour a week just wasn't cuttin' it. I know this stuff takes time, but at a $45 copay for each visit, and really needing to go at least weekly, it just isn't something I could afford to do long-term (I have insurance where you still have copays after you meet your out of pocket maximum). I recently had a dream that was so awful that I woke up screaming. And last night I had a dream that someone broke in my house, and the dream was so real that I sat up on the couch with a hunting knife next to me and I didn't go back to sleep. I was a complete zombie at work today. It's time for me to re-connect with my doctors and see what other options we can come up with. I don't want to be doped up on sleeping pills which don't solve the problem anyway, and I don't want to keep living in a place of fear. I'm wondering if a group setting-type meeting might be a better fit for me. I always associated PTSD with people who went to war or people who were crime victims. I'd be almost embarrassed to go to a meeting and tell people why I have it; it just doesn't seem like it would compare to the tragedies they've experienced. Whatever I do I just know I won't let it get out of hand before I decide to do something about it. I won't let it destroy me like it almost did in 2010. My positive thinking, my faith, and belief that life WILL get better won't let it.
Consider this a segue. I'd rather talk about things that make me happy. Like food.
This is the first week in a while that I didn't have a menu plan in place, nor did I spend my Sunday chopping and food prepping for the week. The end of last week was busy and so was the weekend (two volunteer shifts at church) and next thing I know, the weekend was over. Tonight I made a fly-by-the-seat-of-my-pants dinner. I threw some chicken breasts in a pan and seasoned the heck out of them with a collage of rosemary, onion powder, salt, pepper and oregano. Flash fried with a wee bit of olive oil just until the outsides were slightly browned but still raw inside and threw them in the toaster oven at 400 degrees for 20-25 minutes (this technique keeps them juicy and not dried out). While those baked, I looked in my cupboards and fridge and realized I had nothing that went together meal-wise or made sense, so decided to be creative. I used the same pan that still had the chicken seasonings still in it and threw in a can of organic pinto beans (drained and rinsed), fresh mushrooms, fresh tomatoes, and some jarred organic kalamata olives that have been hanging out in the fridge for a while. I added a few more seasonings and voila
Not to shabby.
Well, it's time for me to wind down and get ready for bed. I'm hoping the bad dreams will subside for tonight so I can get a full night's sleep. I don't like starting my week off so tired.
I'm struggling a bit with an old demon. Night terrors. My nightmares have been coming back and as such, are preventing me from sleeping soundly throughout the night and have also made me dread bedtime. I haven't really talked much about this, but in 2010 I was diagnosed with PTSD after being diagnosed with type 1 diabetes, grave's disease and celiac disease. I experienced a lot of trauma from the multiple life-changing illnesses and being extremely ill for most of the year 2010. In addition to the night terrors, I lost my appetite, I cut myself off from all my friends and family, not even a phone call here and there. I lived with so much fear that I felt like I was going crazy. I rarely left my house and for almost 9 straight months I cried every single day. It's hard to explain without sounding exaggerated, but after the 3rd autoimmune disease diagnosis in a 5 month period and a 2nd unsuccessful heart surgery to correct a heart condition, I lost my ability to sleep, to concentrate, to live normally. That's when the nightmares began; vivid dreams that seemed so real that in my dream I'd tell myself I was just dreaming, but then right after would think oh my gosh I'm NOT dreaming- this is actually HAPPENING. (It wasn't). I had nightmares that ranged from having snakes in my bed, attackers in my house, having my heart stop and tons and tons of dreams that my blood sugar was low while being physically unable to treat it. I dreamed that I was always dying in some way, whether it was someone killing me in my house, chasing me down and killing me, or dying from one of my many medical conditions. In my dreams, I was always alone where no one could save me or find me; where no one was ever around to help me, which is much how I felt in real life, that no one could save me from all the diseases that had plagued me.
The doctor put me on sleeping medication to help me get some much needed sleep. After about a year and a half, things started to improve enough where I wasn't taking the sleeping medication, but since the spinal cord injury diagnosis in July, the nightmares are back and I just can't shake them. I did try counseling but found it too slow of a pace to work. One hour a week just wasn't cuttin' it. I know this stuff takes time, but at a $45 copay for each visit, and really needing to go at least weekly, it just isn't something I could afford to do long-term (I have insurance where you still have copays after you meet your out of pocket maximum). I recently had a dream that was so awful that I woke up screaming. And last night I had a dream that someone broke in my house, and the dream was so real that I sat up on the couch with a hunting knife next to me and I didn't go back to sleep. I was a complete zombie at work today. It's time for me to re-connect with my doctors and see what other options we can come up with. I don't want to be doped up on sleeping pills which don't solve the problem anyway, and I don't want to keep living in a place of fear. I'm wondering if a group setting-type meeting might be a better fit for me. I always associated PTSD with people who went to war or people who were crime victims. I'd be almost embarrassed to go to a meeting and tell people why I have it; it just doesn't seem like it would compare to the tragedies they've experienced. Whatever I do I just know I won't let it get out of hand before I decide to do something about it. I won't let it destroy me like it almost did in 2010. My positive thinking, my faith, and belief that life WILL get better won't let it.
Consider this a segue. I'd rather talk about things that make me happy. Like food.
This is the first week in a while that I didn't have a menu plan in place, nor did I spend my Sunday chopping and food prepping for the week. The end of last week was busy and so was the weekend (two volunteer shifts at church) and next thing I know, the weekend was over. Tonight I made a fly-by-the-seat-of-my-pants dinner. I threw some chicken breasts in a pan and seasoned the heck out of them with a collage of rosemary, onion powder, salt, pepper and oregano. Flash fried with a wee bit of olive oil just until the outsides were slightly browned but still raw inside and threw them in the toaster oven at 400 degrees for 20-25 minutes (this technique keeps them juicy and not dried out). While those baked, I looked in my cupboards and fridge and realized I had nothing that went together meal-wise or made sense, so decided to be creative. I used the same pan that still had the chicken seasonings still in it and threw in a can of organic pinto beans (drained and rinsed), fresh mushrooms, fresh tomatoes, and some jarred organic kalamata olives that have been hanging out in the fridge for a while. I added a few more seasonings and voila
Not to shabby.
Well, it's time for me to wind down and get ready for bed. I'm hoping the bad dreams will subside for tonight so I can get a full night's sleep. I don't like starting my week off so tired.
Friday, November 2, 2012
Your Disease Disaster Plan.
This week I was glued to the news coverage of Hurricane Sandy. I watched the different types of devastation it caused in different states- some got snow blizzards, some got sand, some got wind and flooding. I watched as a New York hospital lost power and their backup generators failed. My mind immediately begins wondering about whether the diabetics and celiacs in the path of Sandy were well stocked up and prepared for the impending disaster. I can only assume that the pharmacies were closed for a while and hospitals were overloaded with patients. What if you couldn't get access to an insulin refill? Do you have enough on hand to get you through for a period of time? If you do have extra in your fridge, do you have a way of keeping it cold in case of a power outtage? Have you notified your electric company that you are an insulin dependent diabetic so that you will be on the list of the first people to have their power turned back on? Do you have a diabetes disaster plan? How about the celiacs- do you have enough gluten free food on hand that if the grocery stores were unaccessable or out of food that you could survive for a while? Because I have bad news for you otherwise- don't count on the emergency food shelves or the Red Cross to have gluten free options for you. Hopefully whether you are diabetic or celiac you've got an emergency plan in place, because in those situations these are additional things you will have to worry about.
I began to think about my situation, and what challenges I might face if there was a a big natural disaster in my area. I'm pretty stocked up on diabetes supplies. I have a good year or more supply of insulin in my fridge, and keep my test strips, lancets and pump supplies as stocked up as I am able to afford. I have coolers and freezer packs ready to go, and I also have a generator. I may or may not even have ammo on hand to defend said supplies (I'm just sayin' you might want to pick a different house to loot). I like to think of myself as a Diabetes Doomsday Prepper, and you may remember reading my blog earlier this year. As for the celiac side, I keep lots of cans of beans, canned tuna, rice, and canned vegetables stocked. I also have cans of Spam stocked since it's a gluten free protein, although I think it's nasty and hope to goodness I never have to eat it.
The show Doomsday Preppers was popular this spring and I hope they bring it back. Nowadays the show I like is Extreme Cheapskates on TLC. Not that I plan on peeing in a bottle instead of flushing my toilet anytime soon, or dumpster diving for food, but I can't say anything bad about those folks cuz guess what, they don't have any debt and I do. They are millionaires and I'm not. So who's the smart one?
While I am not an Extreme Cheapskate, I do like to think of myself as an amateur diabetes cheapskate. I use the same nasty kleenex or napkin over and over until it's riddled with dots and looks like a George Seurat painting. I re-purpose my alcohol swabs by first using them to clean my finger tip if if needs it, followed by using it to clean off all my equipment screens like my iphone, cgm, insulin pump, glucose meter, even my work phone and keyboard and mouse. Until it's dried out. I sign up for any and all free offers for test strips and glucose meters, because I'll use whatever is free before I go out and pay my deductible for my prescription ones. Recently, I signed up for a coupon for a Verio IQ glucose meter and 50 free test strips. Why not? I get to try new equipment for free and free test strips too? Now that's GOLD. And I save money by trying to test my bg less on days when it's stable, to make up for the days when my bg is nutso and I have to test twice as many times. That way it all balances out. Lastly, I have a T1 friend who I swap d-supplies with. I may have extra of one supply she needs and she has extra supply of something I need. Tonight I gave her some of my extra stock in exchange for 2 of her cgm sensors because I'm almost out. Now I'm not saying you should follow what I do, or that these are the right things to do for you. I'm just a person trying to manage my diseases on a reallllly tight budget and sometimes, you just gotta cut corners to make it work.
Do you have any tips for saving money to manage your disease? Are you prepared for a disaster? Did seeing the Hurricane Sandy coverage make you think about your preparedness?
I began to think about my situation, and what challenges I might face if there was a a big natural disaster in my area. I'm pretty stocked up on diabetes supplies. I have a good year or more supply of insulin in my fridge, and keep my test strips, lancets and pump supplies as stocked up as I am able to afford. I have coolers and freezer packs ready to go, and I also have a generator. I may or may not even have ammo on hand to defend said supplies (I'm just sayin' you might want to pick a different house to loot). I like to think of myself as a Diabetes Doomsday Prepper, and you may remember reading my blog earlier this year. As for the celiac side, I keep lots of cans of beans, canned tuna, rice, and canned vegetables stocked. I also have cans of Spam stocked since it's a gluten free protein, although I think it's nasty and hope to goodness I never have to eat it.
The show Doomsday Preppers was popular this spring and I hope they bring it back. Nowadays the show I like is Extreme Cheapskates on TLC. Not that I plan on peeing in a bottle instead of flushing my toilet anytime soon, or dumpster diving for food, but I can't say anything bad about those folks cuz guess what, they don't have any debt and I do. They are millionaires and I'm not. So who's the smart one?
While I am not an Extreme Cheapskate, I do like to think of myself as an amateur diabetes cheapskate. I use the same nasty kleenex or napkin over and over until it's riddled with dots and looks like a George Seurat painting. I re-purpose my alcohol swabs by first using them to clean my finger tip if if needs it, followed by using it to clean off all my equipment screens like my iphone, cgm, insulin pump, glucose meter, even my work phone and keyboard and mouse. Until it's dried out. I sign up for any and all free offers for test strips and glucose meters, because I'll use whatever is free before I go out and pay my deductible for my prescription ones. Recently, I signed up for a coupon for a Verio IQ glucose meter and 50 free test strips. Why not? I get to try new equipment for free and free test strips too? Now that's GOLD. And I save money by trying to test my bg less on days when it's stable, to make up for the days when my bg is nutso and I have to test twice as many times. That way it all balances out. Lastly, I have a T1 friend who I swap d-supplies with. I may have extra of one supply she needs and she has extra supply of something I need. Tonight I gave her some of my extra stock in exchange for 2 of her cgm sensors because I'm almost out. Now I'm not saying you should follow what I do, or that these are the right things to do for you. I'm just a person trying to manage my diseases on a reallllly tight budget and sometimes, you just gotta cut corners to make it work.
Do you have any tips for saving money to manage your disease? Are you prepared for a disaster? Did seeing the Hurricane Sandy coverage make you think about your preparedness?
Wednesday, October 31, 2012
Thursday, October 25, 2012
The worst they can say is no.
A few weeks ago my electric hot water maker died. I've had it for years and loved it so much. I use it nightly to make my tea (you may recall from previous posts just HOW MUCH tea I actually have.) Anyway, while most normal people would drive over to the local Walmart or Target and pick up a new one (they are only about $20-something dollars, after all), me being very frugal decided to write a letter to Hamilton Beach, the parent company of the Proctor Silex hot water maker I own. Here was my letter:
Dear Hamilton Beach,
I am sad to report that my loyal, favorite hot water maker (Proctor Silex) has pooped out on me for the last time. I love this kettle because of its reliability and the long cord, and I can't find another like it. It started to die a while ago but I was always able to get it working again by wiggling and jiggling the cord each time until the light finally came on. Sometimes I would have to prop the cord up with something under it so the power would stay on. It became a nightly (fun) challenge to find what item to put under the cord that was the right height that would keep the light on. But last weekend, the wiggling and jiggling and cord gymnastics stopped working. And thus, I had to warm up my water in the dirty microwave instead.
I'm wondering if you have replacement cords? I love my kettle and am sad to see it go.
No tea for me,
Nikki
I am happy to report that Hamilton Beach provided me with a 30% off coupon towards a new hot water maker.
Also a few weeks ago, my Otterbox case for my iPhone started to break. I've had the case since February 2011 and surely didn't expect that contacting Otterbox about it would do any good. WRONG.
Upon reading my letter, even advising them that I purchased the case almost 2 years ago, they had me send them a picture of the damaged case. Then they sent me an email saying a new case would be shipped. BOOM. I received my new Otterbox case about a week later. I sent them a thank you letter!
The point of sharing these seemingly-unrelated-to-anything stories is that it never hurts to ask. I would never lie to get something for free, because I have strict morals about that and think that's wrong. But there's nothing wrong (in my humble opinion) in asking to see if they would be willing to help you with whatever your situation is.
When I had my spinal cord injury this summer and was laid up without any income, I sat in my cervical collar in a bed 24/7 and watched my medical bills pile up with no money to pay them. Then one day I decided to contact the two health systems I owed the most money to and ask if they had any sort of patient finance programs to help those in 'tight spots' financially. Both did. What I hoped for was that they could lower my monthly payments or write off a small portion of my bill; making it more affordable for me to pay it off. I went through their internal application process, in which I had to prove my income (or lack thereof), provide proof of hardship (easy with all the medical bills I was accumulating), and write a letter explaining my hardship. The health systems decide if- and how much- they are willing to assist, based on your hardship. In my case, both health systems decided I qualified to have the entire amounts I owed written off; one wrote off $1600.00 as long as I paid them $200.00 over the course of 6 months (in $33.50 installments), and the other health system wrote off the entire $1800.00 bill due to providing evidence of severe hardship. I now owe them zero and am $3400.00 less in debt than I would have been had I never inquired about their programs.
Clinics and hospitals offer programs out there specifically to help those who are in tight financial spots. Don't be afraid to inquire if you are one of those people. They understand that people fall on hard times and need help paying their medical bills. In my case, I had been making high monthly payments to both of them for over a year and could no longer continue to make those payments once I was unable to work.
So again, my point is that it never hurts to ask, whether it's your favorite tea kettle that just died on you, or whether you are in dire straights financially due to loads of medical debt. Don't try to tackle more than you are able. See what resources the clinics/hospitals might be able to offer you. These are not state-programs; these are exclusively offered by the health systems as part of a budget they set aside to assist patients experiencing hardships, so don't feel bad about it!
I hope that this information has been useful to you. If you have any stories you'd like to share about a time when you asked for something - and got it - I'd love to hear it!
Dear Hamilton Beach,
I am sad to report that my loyal, favorite hot water maker (Proctor Silex) has pooped out on me for the last time. I love this kettle because of its reliability and the long cord, and I can't find another like it. It started to die a while ago but I was always able to get it working again by wiggling and jiggling the cord each time until the light finally came on. Sometimes I would have to prop the cord up with something under it so the power would stay on. It became a nightly (fun) challenge to find what item to put under the cord that was the right height that would keep the light on. But last weekend, the wiggling and jiggling and cord gymnastics stopped working. And thus, I had to warm up my water in the dirty microwave instead.
I'm wondering if you have replacement cords? I love my kettle and am sad to see it go.
No tea for me,
Nikki
I am happy to report that Hamilton Beach provided me with a 30% off coupon towards a new hot water maker.
Also a few weeks ago, my Otterbox case for my iPhone started to break. I've had the case since February 2011 and surely didn't expect that contacting Otterbox about it would do any good. WRONG.
Upon reading my letter, even advising them that I purchased the case almost 2 years ago, they had me send them a picture of the damaged case. Then they sent me an email saying a new case would be shipped. BOOM. I received my new Otterbox case about a week later. I sent them a thank you letter!
The point of sharing these seemingly-unrelated-to-anything stories is that it never hurts to ask. I would never lie to get something for free, because I have strict morals about that and think that's wrong. But there's nothing wrong (in my humble opinion) in asking to see if they would be willing to help you with whatever your situation is.
When I had my spinal cord injury this summer and was laid up without any income, I sat in my cervical collar in a bed 24/7 and watched my medical bills pile up with no money to pay them. Then one day I decided to contact the two health systems I owed the most money to and ask if they had any sort of patient finance programs to help those in 'tight spots' financially. Both did. What I hoped for was that they could lower my monthly payments or write off a small portion of my bill; making it more affordable for me to pay it off. I went through their internal application process, in which I had to prove my income (or lack thereof), provide proof of hardship (easy with all the medical bills I was accumulating), and write a letter explaining my hardship. The health systems decide if- and how much- they are willing to assist, based on your hardship. In my case, both health systems decided I qualified to have the entire amounts I owed written off; one wrote off $1600.00 as long as I paid them $200.00 over the course of 6 months (in $33.50 installments), and the other health system wrote off the entire $1800.00 bill due to providing evidence of severe hardship. I now owe them zero and am $3400.00 less in debt than I would have been had I never inquired about their programs.
Clinics and hospitals offer programs out there specifically to help those who are in tight financial spots. Don't be afraid to inquire if you are one of those people. They understand that people fall on hard times and need help paying their medical bills. In my case, I had been making high monthly payments to both of them for over a year and could no longer continue to make those payments once I was unable to work.
So again, my point is that it never hurts to ask, whether it's your favorite tea kettle that just died on you, or whether you are in dire straights financially due to loads of medical debt. Don't try to tackle more than you are able. See what resources the clinics/hospitals might be able to offer you. These are not state-programs; these are exclusively offered by the health systems as part of a budget they set aside to assist patients experiencing hardships, so don't feel bad about it!
I hope that this information has been useful to you. If you have any stories you'd like to share about a time when you asked for something - and got it - I'd love to hear it!
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