About Me

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

Monday, August 27, 2012

Struggling with fear.

I need to have a talk with myself about my attitude lately. I have been overly critical of myself, doing a lot of negative self-talk, and judging myself in ways I would never do with others. I blamed myself for getting glutened from a restaurant last week, blamed myself for high and low blood sugars that I'm currently experiencing, chastised myself for not being able to walk 30 minutes on the treadmill without pain in my spine. I'd hear a voice barking at me that I didn't drink enough water today. That I shouldn't eat a brownie when I'm trying to watch my weight. All I could hear myself say was fail fail fail. I've been setting myself up to feel really bad.

I'm sure most of this is stemming out of frustration. I'm upset with my current situation and feel confined. I'm lashing out because I am angry that I have no sense of control over my health. That no one can fix me and stop these bad things from happening to me. I've felt angry that I can work to do everything right with my current auto-immune diseases, do everything the doctors tell me to do, and then have something like this (an out-of-the-blue spinal cord injury) happen. This injury took one thing away from me that I'm not sure I can get back- a sense of security.

After everything that happened in 2010, it took me a long time to feel safe again; that I wasn't going to lose my life. In fact, I'd say it took a full 2 years for me to begin to feel secure, to feel like the events of 2010 were behind me and the auto-immune disease diagnoses were done and I could focus on managing the diseases instead of living in fear of getting diagnosed with another. I began to look at 2010 as a part of the past and felt positive about the future.

And then July 2012 happened. And it washed away my sense of health, stability and security. I felt vulnerable all over again; no sense of control over my life, not being able to stop nor prevent health issues with life-altering consequences. The spinal cord injury was not preventable, which is worse than if it were preventable. Because if it were preventable, then going forward I could prevent it from happening again. Who could have seen something like this coming?

I don't like feeling vulnerable. I don't like to feel scared. I don't like to feel that I can't control what happens to me and that something else could happen to me again. I can't shake the fear that another health scare is going to sneak up on me and take something else away from me. Each illness chips away a little part of the enjoyable parts of my life.

There isn't a person alive that can make me feel secure right now; not a doctor, not a friend, not even a family member. Until you've experienced the fear stemming from multiple, back-to-back, life-altering health conditions, you just can't know how damn frightening it is. In an attempt to gain back some calm and peace in my mind, I've begun reading a new book, Calming Your Anxious Mind: how mindfulness & compassion can free you from anxiety, fear & panic. I'm hoping to take back some of the control that this latest event stole from me. I need to gain back control.

As I was sitting here tonight, I ran my fingers over the incision site on the front of my neck. The incision is still swollen like bee-stung lips. I pressed on it and it still is tender; it's like a soft spot on a newborn baby's head. I feel like if I pressed hard enough, my finger would go right through it. It made me feel slightly nauseous so I took my finger off it. Sometimes I need to run my fingers over it to prove it actually happened at all.

I'm struggling with fear and I'm hoping this too shall pass. And I'm afraid that airing to everyone what I'm struggling with makes me look weak and stupid. I hope you don't think that of me. Just know that I am working really hard to rebuild right now.

Thursday, August 23, 2012

An important PSA about facial tissues. READ ON.

I sit here writing this with kleenex shoved up both nostrils and blurry eyes from tears that continue to make their way down my face. No, I'm not sad. I have #$(*&#$*&#*$!! allergies.

I think I might have found the source of my migraine yesterday (=allergies). My allergies are a mess right now. The weather here in Minnesota is changing. It's 70 degrees and cool for a few days, then 85 and humid for a week. Then repeat. My allergies cannot handle the weather changes.

Here's an allergy tip about facial tissues. Don't buy the tissues with lotion (Puffs, Kleenex, etc.) They irritate your eyes when you rub them. OH, and DON'T, for heaven's sake, buy the tissue with the menthol in them. Not only do they burn your eyes but they also put some sort of funk on your fingertips afterwards and I'm convinced it messed up my blood sugar readings, whatever that chemical is. I prefer Kleenex ultra soft (Ultra Doux or something like that) ones or the plain Puffs with no crap on them. Or the Target brand plain ones are good, too. They are all thicker and you won't blow your nose THROUGH them or sneeze THROUGH them. And forget about using toilet paper to wipe your eyes; you'll just end up with tp lint in your eyelashes.

I have year-round allergies that are completely controlled with a daily Zyrtec pill. But every season change causes me big problems that Zyrtec alone can't fix. I received weekly allergy shots for 5 years, which helped. Nowadays, Benadryl for severe symptoms works if you don't mind being in a mind fog for part of the day.

I'm also allergic to cats (like, really allergic. Instant, uncomfortable symptoms including mild throat swelling), and most animals give me hives, except my precious babygirl Bella

SIDEBAR: I really hate God for making me allergic to animals when I love them so much. Why couldn't he make me allergic to, say, meth? Something that I would never touch anyway? Continuing...

Also mold (indoor and outdoor), grass, carpet, goat hair (not kidding), strawberries, dust, dairy, onions, fabric softener (nope, can't use most dryer sheets or detergents unless they are unscented) and more things, totaling over 30 on my last allergy skin and blood tests. Most were insignificant things that you wouldn't run into in your daily life (like the goat hair). I had no allergies until my early 20's and then all hell broke loose. I literally woke up one day and was so allergic to my cat that I'd had for 7 years that I had an asthma attack that required a call to 911. I tried to keep dear kitty for as long as I could afterwards, until the asthma became so bad that my doctor told me my cat would out live me if I kept her. So my very good friend adopted her and gave her a great home and me visitation rights for the rest of her life (RIP Lily, 2012). (The cat, not my friend, is RIP).

Anyway, enough about my tears and snot problems. Today was a good day. A normal, good day. I got up late, around 9:15ish, lay in bed and watched The Nate Berkus Show. Then I shoved some raw almonds in my mouth, downed some water and hopped on the treadmill to walk for 30 minutes. I then made myself my usual breakfast, Ancient Harvest Quinoa Flakes with Justin's Maple Almond Butter swirled in (you can sub peanut butter), a splash of unsweetened vanilla almond milk to thin it out a bit (you can sub milk), and a teeny weeny drizzle of organic agave nectar on top (you can sub maple syrup). At times I will swirl in a spoonful of sugar free jelly. Oh heaven. The best thing about this breakfast is that it only takes 90 seconds to make. 90 seconds!! People don't tell me you don't have time for breakfast!!

My back/neck was a little sore from all the activity, so I decided to relax for a bit afterwards. I sat in the recliner and read my book, Gone Girl. Have you heard of this book? Oh it's so crazy good. Very psychological without being scary. I'm about 3/4 of the way through.

It was too hot and humid today to be outside, for me or the dog, so we just hung out the rest of the day in the air conditioning and cooked up the rest of the black bean burgers from the mix I made up yesterday. If you haven't tried these before, you really need to. So yummy. And very economical to make. And easy.

Black Bean Patties

2 cups black beans, rinsed and mashed up with a fork (I used 1 regular sized can of black beans)
1/2 medium sized onion, minced or chopped finely
1/4 cup ground flaxseed
2 tsp. black pepper
2 tsp. chili powder

Mix everything together in a mixing bowl. I add about a tablespoon of water to thin it out a bit. Not too much; you don't want it runny. Then form into patties. It should make 4 patties. Spray some non-stick cooking spray in a pan and fry 'em up until browned on both sides. You can freeze them, too.

Serve with a side of veggies or a side salad.

In the afternoon, I hopped back on the treadmill for another 30 minute walk, hopped in the shower and relaxed until, well, now. And now it's bedtime. Not a very exciting life I'm living right now, but I certainly do appreciate UN-eventful, calm days. I've had a little too much excitement in my life lately :)

Wednesday, August 22, 2012

Falling behind.

I've been falling a little bit behind this week. I had full intentions of taking pictures of my last grocery haul, because I was so proud of myself for staying within my new budgetary guidelines (#win). But life got busy and I ended up eating a good portion of those groceries before I got around to taking a picture of them (#fail). So I guess I could take a picture of my now 1/2 eaten groceries...or I could just wait until the next grocery haul and try again.

I've been falling behind on other things, 'betes included. It's high time I put my CGM back on. It's been off since June, since I was taking acetaminophen medication related to the spinal cord injury and it interferes with the CGM. Being off the CGM has made it easier for me to ignore my diabetes. No alarms going off to notify me of blood sugar doom. Ironically, a friend of mine (also T1) called me last night and was saying how off track she's been with her diabetes for the last 6 months. I'm worried about her, because her diabetes is really out of control and she is having complications as a result (both eye and limb neuropathy) and so did my best to try to motivate her back into taking care of herself, and in the process I ended up re-motivating myself.

Tonight I have such a crazy migraine headache that it's hard for me to focus on any one thing for very long. I joined the DSMA chat on Twitter tonight, but didn't contribute much because of the headache. Could be triggered from allergies or from the spinal cord stuff, not sure. I'm going to think positive that when I wake up tomorrow it will be gone. Until then, I'll keep this entry short and go to bed.

Monday, August 20, 2012

Gluten-Free, Diabetic-friendly dieting.

Me, feeling my best with exercise, good diet, and a great spray on tan.

Just a word to say I am not a medical professional and am not giving you medical or diet or lifestyle advice. I'm just spilling my life here on these pages. :) My OWN advice doesn't even always work for ME in every situation so I'm certainly not telling you to follow it. :)

Being bored, sitting at home all day with this cervical collar on is not doing me any favors. I have more than enough time to look in the mirror and identify every flaw on my body. As of late, I have noticed that I've entered the world of "skinny fat." What is that? It's when the scale lies to you. It says you haven't gained weight yet you can't seem to comfortably fit into your clothes anymore. Not being able to do any form of exercise over the last 8 weeks has not been good to my mind OR my body. At last week's doctor appointment, I was given permission to walk on a treadmill, and not like rigorous walking or anything. That's not much to work with when you want to lose some belly/butt/wherever fat. I just need to get back on track. Eating good, feeling good plus liking what I see in the mirror are great mood lifters for me.

Weight management is a tricky thing to accomplish when you are both gluten-free from celiac disease AND you are diabetic. Your routine and your diet must be done with great intention. The diet piece is tough when you must follow two conflicting medical diets. Food in my world must already be gluten-free and lower carb... add in that all foods must be healthy and low fat and what you've got left is grass and twigs. (Okay not really, but that's how it feels sometimes). Really, the only food categories where the two diseases don't seem to disagree are meat and vegetables. How much easier the diet portion of weight management would be if I only had one or the other of these two diseases... sigh. Diet books and magazines don't work for me because they always direct me to eat food that conflicts with one or the other of my medical diets. Nowadays, I follow a gluten-free diet plan that is also diabetic friendly. It was worth every penny.

So let me give you a run-down of common food categories and where the medical diets conflict.

Fruit- Fresh fruit in a person without disease is healthy. Fresh fruit in a person with diabetes (at least for me, anyways) can be downright ugly. Fresh fruit is always gluten-free. I don't eat much fruit because I cannot figure out the correct way to bolus for it; my blood sugar always goes super high after eating it. Dried fruit is asking for a 300+ blood sugar reading. I avoid dried fruit altogether.

Grains/breads- the low carb versions of tortillas and breads are made from whole wheat, which is a no-no for celiac disease. Gluten-free breads and tortillas are almost always made from rice flour or corn and are not low in carbs. Rice (in any form) jacks up my diabetes by causing high blood sugar. Sigh. Therefore I don't eat much bread products.

Sweets- this is really a no-win situation with either disease. Most of the desserts I like either don't have gluten-free versions or don't taste the same gluten-free, and sweets and baked goods do a number on the diabetes due to their high carb counts. Thumbs down all the way around!

Soda- Soda is usually always gluten-free. However, I dislike diet soda, and regular soda is a diabetic nightmare for me. I usually just drink water or tea now.

Vegetables- fresh veggies are gluten-free AND are usually low enough in carbs that I don't have issues managing my blood sugar when I eat them. Frozen veggies I have to watch for gluten, especially if there is any sort of seasoning or sauce on them. Lucky for me, I love all vegetables, no exceptions.

Meat- Meat is usually gluten-free, unless there is cross contamination involved (e.g., meat from your grocery deli, even if labeled gluten-free, is usually cross contaminated from being cut on the same meat slicer as other lunch meats and cheeses that are not gluten-free). Fresh meat that is pre-marinated is off limits. Any meats that contain seasoning/marinade are generally off limits like sausage, hot dogs, lunch meats, seasoned chicken/beef. A few brands offer gluten-free versions but you have to be careful to ensure their gluten-free status. Meat doesn't affect my diabetes, either. Eggs work well for me, too, for both celiac and diabetes.

Cheese/Dairy- Cheese doesn't affect my diabetes, but it is tricky when it comes to my celiac disease. Some cheese is gluten free; some is not. I've had to do a lot of research on different brands of cheese, because there is also risk of cross contamination in the processing and cutting/slicing process. Dairy like yogurt is sometimes gluten-free. I don't drink milk (yuck), but it is generally gluten-free. Dairy products affects my diabetes, especially creamer and yogurt, so now I only use low carb soy or almond milk products.

Snacks/chips- the gluten-free versions are almost always made from rice or corn, so I have the same problem with snacks and chips that I do with grains/breads; high blood sugar readings.

Protein powders- these are more-often-than-not NOT gluten-free, although I've finally found one that IS gluten-free, dairy-free, vegan, non-gmo and organic and actually tastes good. And it's only 3 carbs per serving.

And that's just the DIET part of the weight-management process. Exercise is a whole other consideration when you have diabetes, since for me it almost always results in dangerous low blood sugars, so I have to be super duper careful. It's frustrating when you work out to burn calories, only to have to drink/eat them all back to treat a low blood sugar the exercise caused.

I won't be focusing on the numbers on my scale, since obviously they are deceitful. According to them, I should fit into my clothing. It will be the measurements that I will be focusing on, so tomorrow morning I will be taking down my measurements before walking on the Dreadmill.

Which reminds me that this week I will try to blog about my grocery haul from today, as I said I would, showing what staying in my $50/wk grocery budget looks like. I did well and have enough groceries to last me through the week.

Anyway, my work-in-progress, treadmill/walking exercise regimen and diet plan will help kill time while I'm sitting at home dying of boredom. It gives me something to do; to focus on and to take my mind off of other things. Why not work towards goals while you're down and out? Beats sitting in front of the tv all day. It's a good way to make something good come out of a bad situation, right? Don't get me wrong, I've done my fair share of sulking and feeling sorry for myself since getting the spinal cord injury diagnosis. But that's over and done. I don't like to wallow there for fear I'll stay there.

Which reminds me of the newest addition to my happy book collection I picked up at Barnes & Noble last weekend, from who else? My favorite author, Louise Hay of course!

I mean, look at that book. Aren't you happier just LOOKING at it? That's nothing compared to the positivity crammed inside. If you've read my blog you know I am a lover of positive-thinking, positive-attitude books. Louise Hay is Queen of it! I bought her book at B&N even though I could have gotten it off Amazon for $7 cheaper. I just wanted to take it home with me that day so I could absorb all the positivity right off the pages!

She says beautiful, powerful things like "The moment you say affirmations, you are stepping out of the victim role. You are no longer helpless. You are acknowledging your own power." Think how powerful of a statement that is to someone who is trying to manage a chronic disease! Or when she says "Notice what you are thinking at this moment. Is the thought negative or positive? Do you want this thought to be creating your future and your infinite possibilities? Just notice and be aware." Genius! I would definitely recommend this book to you if you need some uplifting. I am not a paid sponsor or anything like that, I just found this book on Saturday and HAD TO HAVE IT. Her previous books have helped me so much in my journey.

Anyway, it's time for me to tie up my kicks, fire up my iTunes and get movin! Movin towards a physically fit, happier, healthier me. :)

Thursday, August 16, 2012

Why I'm not their favorite patient.

I might be many things. Loyal, friendly, quirky. But there is one thing I am not and will never be- my doctor's favorite patient.

There is a reason for this. I take my diseases and my health very seriously. And I always prepare for my doctor appointments ahead of time. I come to each doctor's visit prepared with a list of questions. Seems reasonable, right? I mean, isn't that what doctors want? They want you to be an active participant in your care, right?

Okay, so maybe there is a fine line between being a proactive patient and being insane. I'm not sure what side of the fence I fall. Yesterday, I had my first follow up to the spinal cord surgery. I'm pretty sure I was scheduled for only 20 minutes. I always try to warn the receptionist when I make an appointment to make it for "a little longer," because I come armed with a lot of questions. They never take me seriously. Well anyways, so during the visit, after the physician's assistant reviewed my xrays with me and talked about the next steps, she asked me if I had any questions. I told her I had a few.

Like, a page and a half of questions, double spaced. I pulled my question list out of my purse and watched her eyes get big. The only thing should could muster out of her mouth was a helpless "Okay." We did get through all 21 questions, and my 20 min office visit turned into 45 minutes. Some questions were of higher importance, like asking about prevention of future problems. And then there were questions like #11, "Can I get my hair done now?" (The answer was no). Which led to a Part Two question "When can I?" (Answer: we'll re-visit the question after next appointment in 6 weeks).

Sidebar: Look, I'm a chick. I need to get my hair done. The girl who does my hair actually facebooked me because over the last 8 years I've never missed my every 8-week appointment and she hadn't heard from me and got worried. I need my highlights, my lowlights, and about 5 inches cut off my hair. All this lack of grooming is making me depressed. For crap's sake, I haven't been able to BEND my back in order to shave my legs for the last 6 weeks or paint my toenails. Give me SOMETHING!!! (TMI TMI TMI).

When I got home, I used my scribbled notes I wrote to type up a more thorough question/answer sheet that I can reference later.

Yes, I'm pretty sure my doctors demand double the payment from my insurance company for my visits.

Look, I have a type A personality. Always have. I can't shake it. I've always been thorough and organized. It's the business analyst/project manager in me. And when you have more than one illness to take care of, you NEED to be organized. I have a binder assigned to each one of my illnesses. Some are thin binders (Grave's Disease) and some are the thickest ones Office Depot offers (Diabetes and Celiac Disease). I now will have one for my spinal cord surgery. Everything related to those diagnoses go into the respective binder. Every lab result, medical record, question and answer sheet, brochure, business card, referral paperwork, you name it, it all goes into the binder. I have dividers for different sections in them. When I go to my doctor appointments, I bring the respective binder with me. The doctors who have been with me since the beginning of my diagnoses are used to it, if not fascinated by it and like to look in it. The new doctors are the ones who are more bewildered by it.

I don't feel embarrassed by this because guess what, at the end of the day, I get to go home and manage my diseases, not my doctor. I see them once every 3-12 months for 20 minutes a pop, whereas every other day during the year I am using that information obtained in said 20 minute appointment to manage my disease and keep myself, you know, ALIVE. So yeah, I want to be as thorough as possible because who pays the price if I don't remember all the information because I didn't write it down or didn't ask the question? That's right, I do.

I'm quirky and organized and thorough. And proud of it! :)

So no, I probably won't be winning any Patient of The Year awards anytime soon. But in the end, I take home the bigger prize.

Wednesday, August 15, 2012

Stop saying I can't.

I'm sitting at a cafe, reading a book about creating an exceptional life and inner wisdom. As I'm turning the page, I take my first sip off the latte. The steam fogs up my readers. I don't care that it's 90 degrees outside; I like my coffee hot. Besides, that's what A/C is for.

I'm feeling quiet today. Contemplative, but peaceful. A follow up visit with the neurosurgeon today revealed I won't be returning to the workforce anytime soon, or taking off this cervical collar. Sigh.

Just as I was beginning to feel sorry for myself, dwelling on the feeling that life is on hold and passing me by, I read a random page in this book that reminded me that nothing is coincidence and that each event that happens to me -good or bad- slightly reshapes me into the (better, stronger) person I am today. In the middle of a bad event, I can't always see the light at the end of the tunnel. 'What good can possibly come out of THIS,' I begin to wonder.

Sometimes you just have to retrain your mind to not expect the worst outcome.

As one of my favorite authors, Louise Hay, says: If you are willing to change your thinking, you can change your life. Author Rhonda Byrne says something similar: If you think it in your head, you will hold it in your hand. No, I haven't won the Powerball -YET_ but what I've wanted more than anything these last 2 1/2 years was to be alive and survive all the health issues that were plaguing my existence. At a time when even some of my doctors gave up on me, fearing that my rash of autoimmune disease diagnoses would continue until one of them killed me, I never gave up on myself and the power I believed my body had to fight back. So after one physician ended one of our office visits by saying "See you at your next diagnosis," I was off reading every health and healing book and journal I could get my hands on. I visited holistic dietitians (who recommend eating whole foods) and began practicing meditation. That's the simplified version of that story (my february 2011 blog entry gives more detail). My doctors watched as my blood work markers vastly improved, and began asking me what I was doing that was working.

I realized, for the first time, how much untapped energy we have inside to restore our bodies. The body has an unshakable desire to heal itself to the best of its ability. It just needs us to believe that we can. Our bodies want us to calm down, be in control and tell it what to do. You can't always reverse what's already happened to you physically. But I believe you can improve your situation and make things more manageable. It's not voodoo or rocket science, y'all, but really basic things that we already know we should be doing. Basic care of our health. As an example, if you are celiac, don't eat gluten. Never. Don't take risks, despite temptation. And things that can improve the state of all your diseases- eat clean, whole foods, everyday. And get some sleep for crying out loud. Get 8 hours every night. Make it your priority. Make YOURSELF and YOUR HEALTH your daily priority. Cuz guess what, once it's gone, it's gone. And you'll realize that nothing else ever should have mattered more.

I hope you'll read yesterday's blog and think about your energy and how you can use it to your advantage health-wise. And I hope you read this and it will be the little spark that ignites your desire to turn things around in your life. You don't need to wait until the New Year craze begins to start taking care of yourself. Start today. Right now. Start little. You'll be happy you did! See that face below, don't I look happy? If I can be happy, YOU can be happy. :)

Monday, August 13, 2012


Energy. It's something that I manage throughout my day, every day. I never used to think about my energy before I got sick. I was just high energy (read: high strung) pretty much 24/7/365. It put my body in the position to always be stressed out. I don't remember a time in my past when I was actually relaxed. Everything seemed important, everything that is, but myself and my health.

After I became ill, I began reading books about health, healing, and energy. I read books about the energy in food. Illness forced me to slow down. And I'm a better person today because I did. Nowadays I prioritize in accordance to what is actually important. I realize that not everything needs to be done rightnow. I used to actually put together a to-do list in my head as I woke up in the mornings, and would fly out of bed, get that heart racing first thing in the morning and get busy, and then stay busy until I went to bed. Not anymore. For the past 1 1/2 years, I make it a practice to wake up slowly. I wake up and absorb everything around me and just breathe deeply, relaxed. Before I think about anything else or get up, I lay in bed and say a prayer of gratitude. If I don't have to wake up early, I will lay in bed and watch something relaxing on tv for a short bit.

Throughout the day, I try to really live in the moment, each moment; really get deeply involved in thought of what I'm doing. I don't rush around like a maniac anymore. And the irony? I still accomplish everything I need to. Why didn't I ever try this method before I was sick? I really allowed myself to be stressed out on a continual basis for nothing.

Nighttime is my favorite time. I have a sort of bedtime ritual. I always shower or take a bath before bed. I prefer a bath if I have time, and always choose relaxing scents of bath salts or bubble baths, like those infused with lavender, vanilla or chamomile. I don't like the feeling of bringing the day's dirt into bed with me. I don't want the dirt and germs on my feet (from walking barefoot around the house, garage or outside) in my sheets. I don't want whatever daily outdoor pollutants that have been stuck in my hairspray or stuck to my face lotion to rub off on my pillowcase. I like the feeling that every night, as I slide into my bed, everything is clean. At night, I also like to slather on lotion with essential oils in them, like lavender. I might watch some tv, but I like to turn it off in favor of reading a book to slowly tire my eyes and relax. Often times I'll read night time devotional books, the Bible, or happy novels. I don't want to read stuff that will stress me out, energize me, or affect my ability to sleep soundly. I don't need to read motivational stuff before bed. I don't need to feel MOTIVATED at night; I need to go to sleep. That's why I NEVER ever watch news programs in the evening. Before bedtime, usually around early evening, I begin to tell myself "it's time to turn down the energy for the night." That includes not only my own energy and thought process, but to also begin watching tv programming that is conducive to a relaxing night of rest and begin stopping all forms of work I am in the process of doing, whether it's work from work, or work around the house.

In the morning, I like to have my coffee pot set on a timer so I can smell the freshly made coffee while I'm still in bed and wake to the sound of the coffee pot rumble noises. It's straight out of a Folgers commercial. If I'm not in a coffee mood, I will get up and start my tea pot, and start my day with a glass of hot water infused with fresh lemon, followed by some tea. I don't drink caffeine, so I don't get buzzed up from coffee or tea. It always has amazed me at work how I always have seen people come in to work the same time as me (usually 7am ish) drinking a bottle of diet coke. YUCK. I believe you should always start your day with good nourishment, even if you decide to eat like crap the rest of the day. At least start your body off with some food it can use. A creature of habit, I usually rotate between two breakfasts; scrambled egg whites with veggies or a bowl of quinoa flakes (similar to oatmeal) with almond butter, almond milk and fresh fruit mixed in. Using my food as my energy source, and not caffeine, leaves me feeling really awake and energized all morning into the afternoon, no problem. You'd be amazed what eating the right foods can do for your energy source. I've always been proud that I don't need caffeine or sugar to feel alert throughout the day.

I even control my dog's energy level. It's freaking amazing how I can turn her energy up or off simply by the tone in which I talk to her. At nighttime, I use a very soft, relaxing, assuring voice with her. In this voice, I will say to her "it's time to go to bed." She will always stop what she's doing, lay down and put her head down. I'll then pet her and ask "Are you tired?" in that same relaxing voice. When I ask her this, she always yawns, as a way to respond. Within minutes, she is asleep. I use this technique (of using a soft, relaxing, smooth voice) with her during the day when she's going bananas (sees a squirrel, hears the garbage truck, etc.) It usually calms her down.

I also manage my energy when managing my diseases. I calm myself when I see a high blood sugar reading, or when I see a really low one. I don't allow myself to go into a full-on panic mode wherein my heart starts speeding up. There have been a few instances where I've been blindsided by severe lows and have to control my initial response, because any diabetic knows that when you panic, it can make your blood sugar even worse. So while I work quickly to correct a bad blood sugar, I do so while talking to myself in a reassuring, low stress manner, telling myself that everything will be okay because I am doing exactly what needs to be done to take care of the problem. This seems to work for me. You can't always choose the situation you're in, especially when it comes to disease. But you can choose your response. Stress will only make you sicker in the long run and won't help you to fix the problem any faster or more efficiently. Anyone will tell you a cool head will always help you out more.

I guess my point is that I believe energy is an amazing thing that you can use to your advantage or to your own disadvantage. There is a time for stress, but it shouldn't be everyday or in every situation. Stress will make you sick, and when you already have a disease I believe it can make your disease more difficult to manage, from both a physical perspective and from a mental perspective. Tomorrow try to recognize your stress levels throughout the day, beginning when you wake up in the morning. Take inventory. Maybe you'll notice ways you can improve. I often receive compliments from physicians on how I stay calm in bad situations. Once you get to a point you can control your energy, you can use it to your advantage.

Saturday, August 11, 2012

Haven't been doing what I should. And I crave normal ppl problems.

I have a confession to make. A confession I will very soon reveal to my doctor. I'm supposed to go in soon to get my A1c tested and ohhhhhh the dread. Ever since this back issue started, I stopped staying on top of my diabetes. I was (AM) burned out from all of the health issues. Sometimes it can feel like too much to manage all the time. So I haven't been checking my blood sugar as often as I should, and I've become lax on treating highs and lows, as well as on bolusing for food before I eat it. I didn't expect the burnout would last this long, but it has and it continues. Unlike celiac disease, where when I eat gluten I am usually immediately ill, with diabetes, not taking care of it doesn't result in immediate consequences that I can feel. I guess that's what makes this disease so dangerous; a false sense of security/health. But my upcoming A1c is going to reveal my dirty secret.

I get tired of making my health issues a priority over each other and over everything else. It's hard to always strike a balance. Which one takes priority today?? I want to have a life outside of my diseases and I'd love if I could make that life a priority one of these days. You know, the part of life that includes having a social life, having a job, enjoying exercise time, having expendable income, all the things that I would like to not only have but be successful at. Despite my best attempts, my diseases have negatively impacted each one of these areas of my life at one point or another.

I wish I could put celiac disease on the back burner so I could just go out to eat anywhere-- not just places that have gluten free menus-- and just sit down an enjoy a meal without worrying I will be gluten poisoned.

I wish I could put diabetes on the back burner so I wouldn't live with worry of either long term complications from highs or immediate death from a severe low, 24/7/365, and also so I wouldn't have to follow two medical diets.

I wish I could put my spinal cord injury on the back burner so I could resume my love of walking, running, training, and yoga-ing. So I can drive again. So I could work again. So I can sleep laying down again. So I can move without pain and without fear of causing further or permanent damage.

I want "normal people's problems." The "I hate my job, I'm fighting with my spouse, the I am soooo busy..." blah blah blah type of problems.


Put into perspective I realize I could have worse problems than these. But right now, I just am craving a few days of back when my life was normal (pre-2010). I wish I'd known to appreciate those days more. Hind sight sure is 20/20.

Thursday, August 9, 2012

Food budgeting when following a medical diet.

(FYI: I am not a medical professional and am not giving you advice, health-wise, money-wise, or anything else wise. Just telling you how I do things in my own situation.)

One fine fact about me is that I'm a notoriously frugal gluten free diabetic. Not cheap, don't call me cheap. I'm not cheap (on any level, for that matter). I'm a proud frugal gal, a fruGAL if you will. I grocery shop largely at Aldi's discount grocery store. What I cannot buy there I purchase at Sam's Club in bulk discounted price (I do verify that their prices are indeed lower than other retailers prior to my purchase). It does not need to cost a lot to eat healthy. I don't make a million bucks and cannot afford to buy organic meats, but I eat as clean as possible and do buy as many produce products organic to the extent I can afford. You've probably noticed your food bills going up too. Food's not cheap, yo. And with the escalating gas prices (my dad was a truck driver so I'm real familiar with how that affects his costs and everyone else's) and the earlier droughts our country experienced, don't expect your food bill to go lower (quite the opposite will be happening).

I went to a different grocery store last weekend, only because I am not able to drive yet and so I have to go wherever the person giving me a ride wants to go to do their grocery shopping. Beggars can't be choosy! But when the check out person told me that the grand total for my groceries was $97...NINETY SEVEN DOLLARS... I about flipped OUT. I didn't buy that much food, and, thinking that things must have wrung up incorrectly, I reviewed the receipt. But sure enough, it was correct. Many of my usual food items had increased in price, other items I don't think I ever looked at the price before throwing it in the cart, and other mistakes were stocking up on sale items that I really didn't need and were not on my list. That's just too much money to spend for a party of one. So I've decided to do a food budget. I budget for everything else, but I seem to always blow my food budget when I get to the grocery store; buying things off my list or buying a larger quantity (what? It's ON SALE!!) than what's needed.

So I drafted a new food budget. $55/week. I go shopping weekly because I purchase fresh salad ingredients, veggies for side dishes and fruits for dessert on a weekly basis. What's left in the budget will be used to purchase items on my grocery list. But I will need to prioritize my list better, because $55 doesn't go a long way. That means sticking with Aldi's as often as possible. Another way that will help to keep me within my budget is to avoid purchasing any processed foods. No desserts, snacks chips, tortilla shells or even salad dressing. I make a few killer homemade dressings for pennies a serving; there's no need to buy expensive dressing that is full of questionable ingredients. And if I want some garbanzo beans, I won't be buying the more expensive canned versions. I'll be buying a bag of dried beans (which costs half as much and makes 2 or 3 times the amount in a can of beans) and cooking them myself in the crock pot. And no more bottled water, especially when I have a PUR water filter attached to my kitchen faucet.

I should clarify that the goal is not solely based on a monetary budget; it has parameters. The food must be healthy, whole, clean foods. My goal isn't just to spend less; it's to be healthy in the end. I have to eat for both a diabetic diet and a celiac (gluten free) diet, which requires a lot more time and a little more creativity.

I will confess that I might have further blown my food budget by going out to eat tonight. With tip, my portion of the bill was $19.09 at Outback Steakhouse. It was a much-needed outing when you remember I have had a cervical collar on for 4 weeks, haven't driven in almost 5 1/2 weeks, and have been house-bound so far for a total of 6 weeks. It was time well spent with a very good friend (like a sis for sho).

Anyway, I'll be posting here and there to let you know how my food budgeting is going, show you my grocery hauls so you see what I'm buying and what it's costing me, and I'll even tell you what kind of meals I'm making so you can see whether I'm staying on track with the clean eating goal. It's a challenging goal when you have diseases like T1D and celiac that you have to take into consideration when making food purchases.

If you are on a food budget and have any advice to make this project a little easier, I'm all ears.

Tuesday, August 7, 2012

Here's what the heck happened to me.

(MRI of the cervical spine- not actually mine. But what I like to refer to as angry squirrel face.)

You may recall from my July 4th posting that I was complaining of back/neck pain. I had no idea what I did to deserve such misery, but it ruined fun plans for the 4th, and as it turned out, it turned out to be a BIG deal.

I ended up making a doctor appointment with my primary care physician the week after July 4th. The pain had gotten so unbearable that I was unable to sit up or drive. It also involved nerve pain that shot down my left arm into my fingers. My doctor did some in office tests, documenting significant loss of function in my left arm. He ordered a CT scan and an MRI. When the MRI was read, the doctor called me to advise I had two ruptured disks, C5-C6 and C6-C7 that were compressing a nerve in my left arm. He contacted a neurosurgeon- on a Saturday morning- and told him he needed to see me right away. My primary doctor wasn't telling me all that was wrong; I'm guessing perhaps that was because it was out of his area of specialty and maybe wanted the neurology department to review the MRI results with me. My primary doctor called me later that Saturday and advised me to report to the neurosurgery department Monday morning. I thought this all this was pretty extreme for ruptured disks that although painful are not life-threatening.

When I arrived Monday, the front desk advised I would be meeting with a physician's assistant named Molly, and that she would only bring in Dr. X, a neurosurgeon, at the end of the appointment if she felt it was necessary. At this point, I'm still in the dark as to what for sure is wrong with me. When Molly arrived in the exam room, this is what she said:

Molly: (thinking this was just about the ruptured disks issue) Okay I'm just going to quickly pull up your MRI and take a look at it. I'll explain the MRI results with you and we'll go over your options. If we need to pull in Dr. X (neurosurgeon), I'll do that at the end of the appointment.

(She pulls up results and reads through them for a few minutes. She is quiet. She is very quiet. She is not talking to me.)

Molly: (Looking right at me) Excuse me for a moment. She gets up and leaves the room.

Right away I'm thinking that is not a good sign.

Sometime later (I don't know how much time passed, I was too busy mentally freaking out), Molly walks back in... with the Department Chair of the neurosurgery department.(!!!) (Also not a good sign). He sits down and reviews my MRI. He is quiet while reviewing for several minutes, then turns to me and explains.

Dr. XX: Nikki, I've reviewed your MRI and there seems to be a problem. Although you were initially seen for pain related to 2 ruptured disks and a compressed nerve, what's bothering you (the pain) is not what's bothering us. We have identified a much more significant issue. (He pulls up the MRI screen shots, which look like an angry squirrel face to me, and is pointing out different white and light gray markings that mean absolutely nothing to me.) You have a severe, potentially life-altering spinal cord injury that needs immediate medical intervention. We are treating this as a medical emergency and need to get you into surgery asap. If you hadn't come in for the other issue (the ruptured disks), we would not have identified the issue until it was too late, as it would not have caused you any symptoms.

So, although I've never been in a serious accident, played contact sports as a child, or had any back pain or issues EVER in my life, I apparently have a congenital spinal cord deformity (that I had no idea I had) which caused what they call a non-traumatic spinal cord injury (stenosis), meaning it wasn't from an impact or accident, it happened over time. The spinal cord was compressed and was at risk of being snapped in half. The doctor told me that if I had even been so much as in a minor fender bender/rear ender, tripped and fell at home, having someone rough housing with me, or any other little impact, my spinal cord would have snapped in two at the base of my neck, leaving me quadriplegic. He said that even without an impact, the spinal cord would eventually snap out of compression. He advised me it wasn't a matter of IF that would happen; it was a matter of WHEN. While the surgery did carry a larger-than-I-was-comfortable-with chance of causing quadriplegia, (like he said, most surgeons try to avoid any contact with the spinal cord during a back surgery), he said there was a 100% likelihood of becoming a quadriplegic without this surgery. He said he was much more concerned about the outcome of NOT having the surgery. He advised of another 30 year old patient who also had this rare condition and chose not to risk the surgery. Unfortunately for him, 2 months later he was rear ended at a stop sign in a relatively minor fender bender. The paramedics were shocked that a man could be injured from the minor accident but took him to the emergency room. The man became a quadriplegic from that accident, and there was nothing my neurosurgeon could do at that point.

He offered to set me up with a second opinion with either the Mayo Clinic, or the University of Minnesota, both of whom he was well-connected and could get me in right away. But he stated that with this severe condition, I would not get a different opinion and that I should make my decision soon before something bad happened.

I didn't feel as though I had a real choice in the matter. Not with those outcomes. So I was scheduled for surgery immediately with the department chair, who, lucky for me, happened to specialize in spinal cord trauma surgery. He is also the president of the neurosurgery association for the state of Minnesota.

He advised that after repairing my spinal cord, they would also do a multilevel cervical fusion to repair the 2 ruptured disks and the compressed nerve. I would have plates and screws in my back. He also was going to remove bone spurs that were causing damage to the spine. He was concerned about my type 1 diabetes and how to manage it during a traumatic surgery procedure, and my endocrinologist and his team were contacted for a consult. A great plan was put into place- literally in 1 afternoon because surgery was scheduled for the following day- to watch my blood sugar and keep it stable during surgery, especially after having to fast for 14 hours prior to the surgery, and knowing I would be unable to swallow liquids or food after the surgery. I would be hooked up with both an IV for glucose and insulin, and afterwards for IV nutrition therapy and hydration since I wouldn't be able to swallow any fluids.

The good news kept rolling in. He then advised me how the procedure would be done. In order to prevent the risk of further damage to the spinal cord, he would need to perform the surgery through the front of my neck, slicing through the neck muscles and tissue to the back of my neck. He said my windpipe, vocal cords and esophagus would be pulled to the side to avoid damage during the cutting. I was advised when I woke up from surgery, I would be unable to speak due to vocal cord trauma and unable to swallow for a period of days. I secretly wondered if the surgeon, if he hadn't become a surgeon, would he have become a serial killer? Cuz who can do that gross of a surgery, seriously.

My pastor called me at 10:30 the night before my surgery and prayed over me over the telephone. It meant the world to me and I felt at peace. I received SO many phone calls, texts, cards, and emails from dear friends letting me know they were praying for me, that their colleagues were having prayer circles for me in the morning at work, that their churches and were praying for me. A church I don't even attend crocheted me a prayer shawl and mailed it to me. I felt overwhelmed by how GOOD people are, even complete strangers. You can't convince me that people are innately evil! I even received 2 bone grafts from cadaver donations. I sent a long thank you letter to the family of the person who donated the bones to me (I will never know who they are; they will never know who I am, but I was able to send a letter through the agency responsible for arranging the donation).

Strangely, I wasn't nervous at all going into surgery. I was grateful, SO grateful, that this condition was caught due to the pain I was having from a totally separate condition. To think what could have happened to me if I'd never ruptured 2 disks in my back... (which I still have NO idea how that happened because I didn't do anything that I can think of). I went into the surgery calm as a cucumber, and the only part I was nervous about was the nurse putting the IV in my hand (can they seriously not find a less painful way of doing that????? With all our currently technology??? Geez.) I woke up several hours after the surgery, and had a smile on my face (see pic from previous post). I remember being so happy when I realized I could move my fingers and toes that I knew that I could deal with the pain of recovery or anything else. I woke up grateful, fully aware of what was at risk if the surgery had failed and immensely happy it hadn't. I recovered in the hospital, had great nurses and a great care team including diabetes educators who came in to check on my diabetes and also brought in gluten free food options for me from their own offices (once I was able to swallow), like yogurts, apple sauce, pudding, Ensure.

It's been 4 weeks and I'm still wearing my cervical collar 24/7. I cannot move my head. I can't bend. I can't lift my arms above my head (think of reaching up into a cupboard or washing your hair). I can't see anything that isn't in front of me, or anything that is above me or low to the ground. At church last weekend, I knocked a coffee right out of a woman's hand that was standing near me. I didn't see her. I felt so bad, but strangely she kept apologizing to me as if SHE'D done something wrong. I was the one who ran into her because I have no peripheral vision. Sooo funny that she apologized! I cannot drive. I cannot walk far or do anything for long periods of time. I cannot lift anything. The recovery is approximately 9 months, but will involve life-long restrictions regarding the weight I will be able to lift, and what movements I will be able to do. I've already been advised I cannot ever again do anything involving a risk for impact- sledding, skiing, contact sports, roller coasters, bumper cars, chiropractic manipulations, etc. Yep, okay that is fine. I'll find out on 8/15/12 whether I can take this blankety-blank cervical collar off or whether that will be extended.(Fingers crossed).

The other day I got a ride to the grocery store and accidentally ran my cart into the back of someone's heel. Now you know how much that hurts. The person turned around as if going to yell at me but then saw my cervical collar and my face all scrunched up in it and she apologized to me. WHAT? I ran into you, lady. I told her I was really sorry and she apologized to me again. I felt really bad but it was funny that she kept apologizing and I was laughing inside (because I wasn't able to laugh yet, for real. No sound came out and no throat movement, so it was just weird air-laugh coming out of my mouth).

I'm still experiencing pain in my spinal cord and in the neck area where the muscles were cut. And it's hard to sleep in this hard plastic cervical collar that digs into the back of my head, my back, and my chest. In fact, I have to sleep sitting up every night. I can't lay flat because 1. it hurts and 2. I can't get back up. It's hard to get used to sleeping in ONE position and never moving. There's no rolling over onto your side. You have tons of pillows behind you to prop you up and you fall asleep in the same position you've been sitting in for 12 hours. I think you fall asleep out of boredom, really. There's only so much tv you can watch and books/magazines you can read. Being unable to type or use the internet was awful. Talk about feeling out of touch!!

But still, there's a huge lesson to be learned (for me). That you can have such a horrible thing happen to you, and yet still feel like the luckiest person in the world. Yeah, I wonder why so many bad things have happened to me (health-related) in the past two years. And really, having this health problem come out of left field- a problem I should normally not even be at risk for- back problems- having never played contact sports or been in a bad accident, not being overweight, etc. The doctors were as shocked as I was. But sometimes that's how life goes. After each illness I've been diagnosed with, I've had to reinvent myself and redefine my definition of myself; who I thought I was; what I thought was important. This illness was no exception. While previously everything I had wrong with me was organ-related, this one was musculo-skeletal and unrelated to any problem I've ever had. I know I can live with whatever restrictions I'm given from this ordeal, because I've learned how to live with restrictions from my other illnesses- not drinking caffeine (heart related), following a strict gluten-free diet (celiac disease), multiple diet/lifestyle changes (Type 1 diabetes), strict medication management/adherence (grave's disease).

Life is precious. Each chance I get to survive something big is HUGE to me. I AM a survivor. I'm alive, I'm happy, I'm extremely grateful, every day. I can live with whatever those doctors throw at me because I'm ALIVE to live with them. So many people don't get that choice! I will keep spreading sunshine whenever, where ever I can. I really want people to know that no matter what they've currently got on their plate, it's do-able, it's manageable, you can do it.

Wednesday, August 1, 2012

It's been a month.

Just wanted to let you know I am alive. I'm recovering from a surprise spinal cord injury repair surgery and have been unable to type for the last month. But I am recovering well! Will post a "real" post soon!

This is a photo of me in the recovery room following surgery, with a puffy face full of fluid. For the record, I have no recollection of this picture being taken. But I was told I was my usual, cheery self coming out of surgery!