Embracing the Squirrel

Imagine if someone told you for every good day you have the rest of your life, you would have three bad ones. Every week you would have only two good days. Every month you would have only eight good days. Every year you would have only 96 good days, the equivalent of about three months.

Now imagine that you don’t get to choose when you have the good days. You don’t get to count on the good days coming on a regular schedule. You don’t get to know how many good days you might get before you have bad days again. You can’t plan anything in your life without knowing your plans won’t fall through or be ruined at a moment’s notice because there is nothing you can do to keep the bad days from showing up.

Imagine living like this for most of your life. Imagine what a drag you might seem to your friends and family. Imagine what it must be like for other people to have to listen to your complaints for most of their lives. Imagine the burden you would feel like on everyone around you because you not being able to keep up means you drag them down, as well. Imagine raising kids through all this. Imagine missing years of school activities and family get togethers because of this. Imagine disappearing from general society because you can’t bear the drag you’ve become on the people around you.

Let’s start over.

Imagine if someone told you that your existence on this earth would change lives in a variety of ways. Every week you would have an opportunity to do something crucial in someone else’s life, every month you could change history, and every year you would be loved for being there when no one else was.

Now imagine missing all those opportunities because you had to be at work, or because you were in a bar drinking with your friends, or because you were able to spend all your money on shopping and eating out.

Imagine the rest of your life being filled with people who were so glad you showed up for five minutes in their lives in the middle of the night, so thankful someone out there said exactly the right thing when they needed it most, so grateful someone else had the time to notice they were having a bad day, too. Imagine being thanked for your kindness when all you did was log onto your computer.

Imagine.

You aren’t a drag just because you are stuck. Free your mind. Create the world you dream inside you. Share what makes you feel happy. Find others who help you laugh.

Imagine finding out at the end of your life how powerful you were in other people’s lives.

Preparing for Flares.  Yeah, it’s depressing, but you know what? I like the person I’ve become.

diabetes and steroid meds

Originally posted at diabetes and steroid meds | GrandFortuna’s League of 20,000 Planets and follows Holidays with Diabetes- easier than you think

Disclaimer- I am not a medical professional or nutritionist, but I do have diabetes and have become really good at controlling my blood sugar with diet since I cannot take the diabetes meds.

Having to deal with diabetes sucks bad enough, but sometimes you have to get prednisone shots or go on a medrol pack for allergies or autoimmune flare ups or goodness knows what else, and then diabetes can turn into a real nightmare. Steroid meds force your adrenal glands to squeeze out more cortisol, which in turn makes other hormones and chemicals do stuff, and while this can be wonderfully life-saving, it also makes your liver dump out its glucose backup, originally meant for fight or flight emergencies, into your bloodstream *right now*.

Facts About Corticosteroids (Steroids) <- click

Steroid meds are awesome when we need them, even when they temporarily make us gain weight and lose sleep. But a diabetic person on steroid meds is in a catch-22 situation when their blood sugar spikes a hundred or more points and stays that way while on steroid treatment. Increasing your diabetes meds without strict monitoring can get dangerous, and then you wind up on a roller coaster between high spikes and low drops. This is especially dangerous in traffic. I have no proof of that, but I’m sure doctors and highway patrol would agree, because low blood sugar drastically affects decision making and reaction time, kind of like being drunk or sleepy.

I have a solution! And it works! I confess it’s not my idea, but it’s brilliant, and I can help you. 

The best thing I ever found for easily controlling blood sugar spikes during steroid treatment is the Rosedale Diet. (I’m not being paid to say this, and I bought nothing from them but a used book off Amazon.) Dr. Rosedale takes the time to list foods you can eat that don’t spike your blood sugar. There are plenty of foods out there in the form of proteins and healthy fats that you can rely on. The problem is that our world nowadays is so saturated with carbohydrates (sugars and starches) that it seems almost impossible to know what to eat during times of illness and stress, when a diabetic’s blood sugar goes the highest.

Other easy ways to learn what ‘carbs’ to avoid is by following the South Beach Diet or by learning the glycemic index. Even people without diabetes find they lose weight faster and in a more healthy way when they simply limit the amount of carbs they eat. Diabetes websites such as American Diabetes Association also recommend counting carbs‘. But that sounds like a lot of work, you say. Nope, it’s EASY. Food labels show you how many grams of carbohydrates per serving. Rule of thumb is 10-15 carbs or less per meal or snack. You get 11 carbs in one cup of milk, for instance (that’s half of a tall glass).

I had the opportunity to try this myself recently after an ER trip with IV prednisone, benadryl, and pepcid for unknown cause that could have been anything from allergic reaction to lupus flare up. I also had to take a pain pill on an empty stomach there, so they gave me 4 crackers, which normally won’t spike my blood sugar much at all because it’s just under 10 carbs. Since I hadn’t eaten in several hours, my blood sugar was most likely below 100 before I got the prednisone shot. (I’m able to control with diet since I can’t take diabetes meds, and therefore test regularly, so I know pretty well how it goes for me.) After I went home I got my glucose monitor out and a piece of paper to keep track. My blood sugar had jumped up to 148 from only 4 crackers on an empty stomach. I knew better than to eat any more carbs that evening, so I scrambled a couple of eggs and ate a piece of cheese. My blood sugar held steady like that for about 12 hours. When it finally came down the next morning (tested 111), I had some coffee with a little milk and a half tsp. of sugar in it and did ok, but I still stuck to mostly proteins and healthy fats until I was sure it was going to stay down through the afternoon. THEN I went back to 10 carbs per meal and snack. But then when it was time to take prednisone pills that evening (24 hours after the shot), I stopped all carbs again about an hour before I took the pills and didn’t eat anything else through the night. The next morning my blood sugar was down to 115, so I was able to handle a small amount of carbs with breakfast, and then eat normally as the day wore on.

This worked fantastically until the fourth evening. My brain fell out, I wasn’t thinking, I remembered my prednisone and took it without waiting after I ate, and 30 minutes later suddenly decided to polish off the rest of some chocolate milk I had left over, about a cup. *WORST*NIGHT*EVER*. ~omg~ My blood sugar must have spiked over 250 and stayed there for hours, because I was miserable, up every hour to pee, tossing around feeling like my heart was beating too hard, felt too hot, finally got a nasty headache that went down into a neck spasm and I had to get an ice pack out at one in the morning just to be able to lay back down. It didn’t even dawn on me until I woke up again at 3:15 with a nasty throbbing headache that I did that to myself. I totally forgot to count my carbs and slammed that prednisone down right in the middle of them. I took my blood sugar right then and it was 142, so at least it was on the way back down, and was 118 by 5:45, thank goodness. The next night I watched my carbs again and *slept great*.

Ideally, you want to keep your blood sugar below 120, preferably between 86 and 100. Blood sugar goes up and down all day as we eat, and that’s normal, but it’s not normal for it to go over 120 and stay way up there for hours, which is what prednisone will make it do, especially if you’ve just had a shot. So until that comes back down, NO CARBS, or you’ll make it go way higher. A great site to get really good blood sugar information from another real person like me is Blood Sugar 101.

If you are diabetic and must spend a week or longer on steroid meds, here are a few quick rules of thumb until you can get your menu figured out

*Avoid all sugared drinks, including soda pop, tea, and fruit juices.

*Cheese, cream cheese, and butter are ok, but cut down or avoid all other dairy, because lactose will spike your blood sugar, including cottage cheese and some other soft cheeses.

*Eggs, nuts, meats, poultry, and fish are awesome, but avoid eating them if they are breaded in any form, especially tempura. Breading (flour) will spike your blood sugar as much as sugar will. Peel the breading off. This goes for other breaded foods as well. NO onion rings or other breaded veggies like okra or mushrooms or jalapeno poppers! Also beware of sugared or honeyed nuts and main dishes with added sugar in any form, which happens in some Asian, Mexican, and Italian dishes. *note- IHOP uses pancake mix in their scrambled eggs and omelettes, which will spike your blood sugarCheck labels on frozen precooked meals.

*Avoid all grains in any form as much as possible until your blood sugar comes down, and then only in moderation because grains are super carby. This includes all pastries, cakes, cookies, pies, breads, buns, tortillas, gravies, sauces, pastas, and rice. I know this is really hard. *hug*

*Be very careful with all legumes. Beans will spike your blood sugar a little differently from grains, but will stay high for a long time if you eat a lot. This includes chick peas and tofu. This part is really tough for vegetarians who use legumes for protein, so please watch this and keep monitoring your glucose levels.

*Avoid potatoes and other high starch or high sugar root vegetables and gourds, such as squash, pumpkin, carrots, parsnips, and beets. Stick to leafy greens and cruciferous vegetables like broccoli, cauliflower, brussels sprouts, and radishes. NO french fries or chips! Corn is the worst, watch the peas, stick to green beans, unbreaded okra, and asparagus. *note- some restaurants soak lettuce and salad veggies in sugar water to freshen them up, which can spike your blood sugarThis has happened to me. It sucked. It’s not fair when you can’t count on ‘healthy’ low carb foods in restaurants because of poor practices, so be vigilant.

*Be careful with tomatoes and ketchup, very high in both natural and added sugar content. Avoid salsas, spaghetti and pizza sauces, basically stay away from concentrated tomato products if your blood sugar is already high.

*Cut out fruits until your blood sugar is under control, although you can probably eat most berries without much of a problem. NO watermelon! Fruits are naturally very high in sugar content and are as bad on spiking blood sugar during steroid meds as drinking soda pop. I think avocados are ok, half a banana or less, but since fruits aren’t marked for carbs and are generally carb rich, it’s easier to walk away if you haven’t had the time to look it up.

DO NOT DESPAIR. Remind yourself this is temporary until you can figure out your blood sugar pattern, like I did, or until you can make sure your diabetes medication is working well for you while you are on steroid meds. The worst thing you can do on top of feeling sick or dealing with something like flare ups and meds is make your diabetes worse. When you don’t feel well in the first place, it’s very natural to grab and eat something that tricks your body into thinking it will feel better, like caffeine or quick sugars and starches. But that feeling is very temporary, and the consequences are not only miserating, but harmful and even dangerous if your blood sugar is spiking up into the 300’s. YOU CAN CONTROL THIS. I’ve learned this because my own health depends on it, since I can’t take the pills. A nice perk I’ve noticed is that when I carb count while on steroid meds, I don’t have any new weight gain.

I’m not going to abandon you there. I have a lot of experience with making food yummy and keeping my blood sugar down. That list up there is for emergencies while you are trying to get through the next 24 hours (or week) of misery (because that is usually when I find articles like this myself, and probably why you are here, too). You need a reward for sticking through this far during such a sucky time! heart Let’s make this easy!!!

I know what you’re thinking- it’s already sucking bad enough, but the thought of eating salad and no dessert when you need comfort food the most is about to send you through a black well of despair. If you absolutely must have something or go crazy, the dessert I have found that does the least harm is a very simple cheesecake, but you still need to keep the portion small so you won’t make yourself sick. I got this recipe from a Philadelphia cream cheese box. Total carbs in the entire cheesecake is 224, and if you slice into 8 portions, each portion is 28. So eat half a slice of this cheesecake and get only 16 carbs, which is fantastic compared to most desserts having 30 or much more.

Crust- 1 1/4 graham cracker crumbs, 1/4 c sugar, 1/3 cup melted butter, stirred together and patted into pie plate.

Filling- Mix together 2 8-oz blocks of cream cheese, 1/2 c sugar and 1 tsp vanilla, then mix in two eggs. Pour into crust and bake at 350 for 35-40 minutes. Do NOT add a topping when it’s done unless a label says it has no carbs because it’s been replaced with artificial sweeteners. Fresh berries are ok if you don’t add sugar to them, but please use your glucose meter to verify this and not my word.

One of the biggest challenges in switching to a low carb diet is thinking you have to sacrifice flavor and feeling comfortably full, if you are used to filling up the empty corners on breads and desserts. One of the myths of good health is that fats will kill you, when in fact the sugar is already doing it much faster. The body craves healthy fats because they are essential to good nerve conduction and proper metabolism, among many other things. Because fats have lots of flavor and calories, a little bit of fat replaces a whole lot of sugar and starch and your body is much more quickly satisfied when you eat them. When you eat sugars and starches and play the game of spiking your blood sugar, your body sends out an alarm when your blood sugar starts to drop, and if you are diabetic, this alarm is sent out prematurely because your system is wonky, and bing, you’re hungry again even when you’ve had more calories than you need and it hasn’t been that long since you’ve eaten. This vicious cycle can be broken without the horrible suffering you imagine, simply by eating more proteins and fats. Treat yourself to some delicious food as you limit your carbs while you are on steroid meds, and you will feel so much better in both the short and long term. I have a few recipes of my own linked right here that work wonderfully for me.

campfire scrambled eggs– add more veggies if you like, it only gets more delicious

restaurant quality alfredo sauce if you need a low carb sauce or gravy to go over grilled meat or poultry (do not add pasta)

Italian Chicken Fingers– the breading is half parmesan cheese for low carb

really good chicken soup– super low carb unless you add carby stuff like potatoes and rice

I wish you all the best, and I hope this was helpful.

winning the suck contest

This week Sept 9-15, 2013 is National Chronic Illness Awareness Week. Actually, I think it’s worldwide. And I think it’s being called Invisible Illness Awareness Week now –> http://invisibleillnessweek.com/

I have a special blog called spaz at http://jankita.blogspot.com/ for my ‘drag’ posts. I don’t write a whole lot of those for the public, but when I do, I make sure they don’t suck to read.

pill phobia at its finest –> http://jankita.blogspot.com/2011/03/pill-phobia-at-its-finest.html

blinking in the light –> http://jankita.blogspot.com/2012/07/blinking-in-light.html

walking in the air –> http://jankita.blogspot.com/2012/08/walking-in-air.html

I like it dark –> http://jankita.blogspot.com/2012/12/i-like-it-dark.html

I’m blue –> http://jankita.blogspot.com/2012/12/im-blue.html

aspie overload –> http://jankita.blogspot.com/2013/09/aspie-overload.html

I know it’s hard. Believe me, I KNOW.

There are two ways to look at life- selfish vs. selfless. The biggest challenge I ever had was figuring out how to cut through all the overwhelming pain, fatigue, and brain melts to be kind to other people. It’s so easy to fall into the dark pit where you think because it all sucks for you that the rest of the world owes you and has to excuse you. Um, no they don’t. No one owes you anything, and there is no excuse for treating other people badly, no matter how crap your own life is. I don’t care how unfair life is, if all you can do on this planet is whine and moan and treat other people badly, you suck.

I had to face this. I had to own the fact that I suck. I had to accept that life is unfair. You cannot truly go on until you take these things into yourself and digest them down into something you can turn inside out into being someone other people actually want to be around. (That sentence was a handful.) No one wants to be around you when you suck. And no matter who you are, life will always feel unfair. You don’t get context until you go through stuff yourself, and any time something doesn’t go the way you want it to, it sucks. Simple formula.

There is no contest. I’m not out to win My Life Sux Worse So You Have To Be Nice To Me More Than I Have To Be Nice To You. But some people ante up like it’s a contest. We each have a headache, mine sux more than yours, ok but mine is on top of this bad day I’m having, and we go on and on building up these monuments to our bad days. You know what? There is nothing more depressing than trying to win the worst day contest. Just everything sux, let’s move on to another subject, ok?

I’ve had 30 years of life altering suck. But I noticed some people have way worse suck than I have. I may live with pain levels that would have other people thinking suicide, but I’ve never been in a fire. I’ve never lost my own child. I’ve not yet had cancer. Yeah I’ve gone through stuff, but there is no comparison between me and someone who has been in a fire and had reconstructive surgeries and still all scarred up. They have their own suck, I have mine. Same with any other pain, grief, and despair. Sooner or later, I don’t care who you are, your life will suck in ways that you never dreamed would ever happen to you. The sucky stuff opens our eyes and hearts and challenges our souls.

I wrote a sorta lengthy post on my bluejacky blog a few years ago called “Synchronicity, Suicide, and the Eyes” –> http://bluejacky.xanga.com/2008/07/23/synchronicity-suicide-and-the-eyes/ There comes a point where we ask ourselves if being here on this planet is more about us being worth the air we breathe. It’s important that we get past that yawning black cavern of self pity and see the light around us. Even with full blown suck, I’m so glad I got the chance to be here.

Chronic Illness or Invisible Illness Awareness Week, whatever you want to call it, I’m glad another group is ganging up on the public because there really does need to be more thought out there about stuff all around us that we might shrug off or take for granted. For instance, I have difficulty pulling or pushing doors open in public buildings, so I need the little handicap button thingy. One year I had a lot of difficulty moving quickly and got smashed in a door in a big beautiful bank because the button was so far away from the door that even an able bodied person without pain would have to walk quickly. It hurt real bad and I cried. It was mortifying and embarrassing and brought all the wrong kinds of attention. There is no dignity in being bruised up by an automatic door on a day you can barely keep it together in the first place to run your errands. So yes, I think Awareness Week is fab and helpful and whatever.

But I’m just saying that we’ll get more awareness if we aren’t hateful and crabby and snotty about it. It’s important to remember that we are ALL human, and that we ALL need to be kind and good at communicating. Maybe it’s not fair that some of us have to do it through a fuzzy static of crap, but other people will listen better if we can be cool about it.

It’s very hard sometimes to be nice when everything sux and it’s overwhelming your brain. I know other people can find me a little shocking on bad days. So my contribution to Invisible Illness Awareness Week is to beg the public to please not take me personally, please blow my crabbiness off when the suckiness is taking me down, please forgive me for seeming like a jerk when I react to something minor, please understand that underneath my reaction is my horrified recoil when I look at myself and then the overwhelming depression that I’m ugly when I suck. I want very much to be wonderful and sweet and for you to like me, but some days that feels almost impossible. So please love me anyway, even when I suck.

It’s like having brain sex

At the best of times I have a pretty awesome brain. I’m afraid the best of times is in my past. I can always brag about scoring over 30 on my ACT, but that means nothing after a couple of decades of brain-impacting autoimmune problems and big bad viral infections taking me down for months at a time. If you’d like to know more, click this pic.

 photo blinking.jpg

So this morning I’m wobbling around the massive WordPress maze of instructions for downloading this yada yada JUST so I can change the theme on my newly migrated Xanga blogs. omg. The very first line in the instructions is “Don’t change anything until you read this.” I clicked aplenty during that migration. While root codes were still being integrated onto new servers I was clicking away, getting stuck, going in loops, running into walls. After a week of watching my original info slowly come back up like sleeping giants rubbing their eyes, I am finally getting links to ‘how to do this’ kind of stuff. Oopsie.

‘Daunting’ is a cute word. I used to fly through techanese with ease, the way mathy people fly through seventh grade algebra. You know what? I *just* want my blogs. I’m not even going to say how much money I put into that kickstarter. And I’m not angry, I’m just really tired. This whole thing has been dragging on since May, it completely displaced my work schedule over the summer (along with some other surprises), and for the first time in my life I’m actually wondering if I should hire somebody to help me fix my blogs. I used to be the one who fixed other people’s blogs. *wow*

I have to think forward. “Onward!” I remember back in 2007 this was one of my favorite videos to run in the background while I labored through lengthy manual html in the dead of night.

I CAN DO THIS. Might take some time, but it’s gonna look ***goooooood***.

In the meantime, I need to get back on track and worry about these forms my publisher wants filled out. Just not as fun as obsessing over blogs.

Since I’m in the Merlin fandom now, I’ve updated the song source. This is my work vid today.