Starting a New Life After Almost Dying or How Polymyositis Changes Everything

Sooooo.... yeah, I guess I fell off the diet wagon for a long time, and then this year I find out the hard way that I have a rare autoimmune disease called Polymyositis (PM) with Interstitial Lung Disease (ILD). Basically my body is attacking my own muscles, & the worst parts are the shoulders and hips. Some people have issues with swallowing, but I'm okay there thankfully. I had to go to inpatient rehab twice for weakness that put me in a wheelchair. Each time I got out, I was able to walk with just a cane outside. This time I weaned off the oxygen and my lungs are finally clear of crackles.

It all started with bilateral pneumonia right before Halloween 2011, which led to respiratory failure and they thought the muscle weakness was atrophy from the coma. The coma was to keep me from ripping out the ventilator they put in. It was all actually the start of Polymyositis. It took almost 5 months to get a diagnosis of PM. I was in the hospital at least once a month for a minimum of a week at a time, and I had to switch hospitals to find this out. Come to find out, weaning me off Prednisone was causing relapses! Now I'm on tons of harsh meds, and physical therapy (PT) and occupational therapy (OT) have gotten me almost back to 100%, but not quite.

Ironically, I was in the process of losing weight and was down to 211, but stuck and going back up. In the hospital I swelled up from the high doses of Prednisone I'd be given, and go back down from the Furosemide/Lasix. I have stretchmarks on the sides of my knees as reminders of this. I couldn't even bend my legs at the knees all the way it was so bad one time. At least now I know what to expect when I get Prednisone in the hospital.

This last stay in the hospital, in inpatient rehab, I was doing 2 hours of exercise and one hour of daily living (ADLs) every day while on a 10 carb meal limit. The Prednisone increases my blood sugar and makes me hyperglycemic. So the exercise & carb restriction had me come out of the hospital at 194.7! I stepped on the scale twice to make sure. Since I've been home, I'm back up to 210 with PMS this week. I'm hoping the Lasix brings down the bloating, & next week I'll be discussing tapering the Prednisone so the swelling goes down. I'm inching up in weight, but I don't know how much is meds and how much is lazy eating & not exercising 2 hours a day.

Here's the plan to figure it out: 

Elimination dieting of sugar, dairy & wheat/gluten starting June 4th and each week after, eliminate the next thing. It's first Monday of June. Why wait? Because I'm planning a major event by travelling to Chicago June 1 and trying to 'cleanse' my diet while travelling is stupid & I'll fail. If I fail, I'll give up. I'll be checking with my Drs. on this idea as well before I start. My next step has slowly helped ease me into this somewhat. I'm really going to miss cheese, greek yogurt, ice cream & chips.

Cleaning of the kitchen cabinets and freezer/fridge. I've been 'shopping the pantry' to clean out expired foods, processed foods, etc. Now that I'm paying attention to what's in the food I eat, and how I feel after I eat it, I realize that the garbage I'm putting into my body makes me feel like garbage. The less temptation I have in my cabinets or fridge, the less likely my willpower will give out. So processed, microwavable, HFS, MSG, and similar items are vanishing from my home.

Exercise program: My PT told me to walk every day and each day go two houses further. This starts now, obviously. I also have OT exercises to do with my arms even though I'm not in OT anymore. These keep my strength up where I'm still shaky and hopefully keep the flares at bay. How many times did I wish I was in shape before getting sick?! Having two nurses have to help you, or not trusting someone to be strong enough to catch you if you fall because you're heavier than them sucks. Muscle strength is what helps me to get up off the floor! Motivation is all I need when I'm not being goaded by an evil therapist. Yoga & swimming are on the OK list as well. I'm excited about this. I also think Tai Chi might be good for me for exercise and for keeping stress at bay.

This is going to be really hard. Food is my life. I love cooking. I love eating. No... this is going to be a CHALLENGE! I need to change my mindset. If I overcame not being able to wipe my own butt more than once while in the hospital... I can change my diet and exercise everyday - even if I hate it. Changing my diet should be easy compared to what I've already done so far.

Time to start a new life after almost dying.

Sick

Oh the fun of sinus congestion and feeling bad all over.  I've had more chicken soup, tea, and orange juice than should be humanly allowed.  The poptart I ate was dry and scratchy and tasted like dirt - sugary dirt.  Yuck.  Milk was a really bad choice this morning and just made me a way more congested, and I knew better so that's worse.  I suppose this is a good thing?  The taste of my normal foods are just off and I don't want to eat anything since it tastes weird.  It may even just be allergies but I doubt it.  I can guarantee I won't be trying to do any aerobic activities while I can't breathe through two nostrils at the same time.  I just feel so yuck right now.

I'm just waiting for my son to get this too.  He just got over a cold and it's never fun when he's congested.  That truly stresses me out and trying to get him to eat stresses me out even more.  The only easy part of that is that I can finally keep up with him because he doesn't want to do anything.  I know he's better when he's back to his Tigger-like bouncy self.  That's usually when I end up eating what he leaves on his plate because it's basically not touched.  I don't eat mine and then his, I usually just eat his plate because I know he won't.

I really need to figure this all out.  This might just be the most boring non-weight loss blog ever.  There's no weight loss or exercise to be seen around here.  Just me thinking about it and wishing it would happen. You know, I'm in a terrible mood today and sick of myself.  On that note...g'nite.

Oatmeal

Today I realized if I start my day with oatmeal, I don't have the urge to snack or just wander in search of something to eat.  It actually keeps me full until lunch and I like oatmeal.  Okay, so it's not the plain kind...yet.  And I probably ingested too many calories, carbs, sugar, etc. but it's good to know and I can switch to plain with my own fruit once I'm out of my blah slump.  I'm feeling better.  I don't know what it is when fall ends and right before Daylight Savings I get all out of sorts and yuck.  I'm not going to blame it on PMS because that's not like a month long issue.  Not for me anyway.  So I had greek yogurt and homemade chili with veggies in it.  I have always put in frozen mixed veggies, even though this time it felt like I was ruining it, but I like them and it's better for me.  Now as far as portion control, I could probably have had smaller portions and no cheese.  I didn't use sour cream at all this time.  It's these little changes I need to document so I just don't feel like I'm completely failing and just not making any effort at all.  Thank God the Halloween candy is all gone.  We didn't have that much in my house, so that was a plus.  But I did have KFC chicken and then homemade pizza Saturday while I visited family.  So my battle is just maybe trying to work on portion control in small ways.  I really, really know I need to add exercise.  I'm not mentally there yet.  I'll have to blog those out tomorrow.

My Hope

My hope this month is that by writing about my struggles to even get motivated to get fit will lead to some changes.  I really feel silly writing that I didn't work out or didn't eat wonderfully again today.  I wonder if I can write that everyday and still call this a weight loss blog?  I've never gained this much weight before so this is all new territory.  I've always been able to starve it off on Mt. Dew and Goldfish crackers.  Having my son and having my gall bladder out really put a wrench in that unhealthy weight loss program I had going on.  Now, with the lack of a gall bladder, if I don't want to have some serious intestinal issues, I have to eat something.  If I wait until lunch I'm screwed.  

So this weekend I'm going to see family, my son is going to burn off more calories than he takes in, and I'm going to take in more than I burn off.  Somehow I'm going to get some walking in there somewhere.  It's getting cold and I really, really wish I could afford the gym right now.  Since I'm self-employed, I hope and pray my contracts pay me on time.  This month it didn't happen like that and my reserve is already running low from moving and not going to school this year.  It's just a big struggle to get back on track to where I'm feeling comfortable with my life and my schedule.  Oh, the guilt.  This sucks and it doesn't help me get skinny.  

Here's the stress showing - the spice candies I don't like that much just went into my mouth.  Five of them.  Ugh.  Now I'm going to go rummage for something, and I don't know what yet.  Something.  I hate stressing about money because it leads to eating things I don't really want to eat.  If I ignore it, I will be back up in 5 minutes rummaging again.  Ridiculous.  

Boy, I hope I get to the fitness part of this blog soon because this really doesn't speak well for my progress on losing pounds at all. 

Food

I love food.  Obviously.  I love cooking it and creating flavors that just meld seamlessly.  Eating it is the reward for the work put into creating.  If something tastes good, my willpower to resist eating it all or eating too much goes out the window.

So how do I turn off my desire to eat delicious food and still say enough is enough?  It's not like suddenly I'm going to have willpower out of the blue.  I mean, if I had willpower like that I wouldn't be where I am now.  Fat.

What kills me is that when I was pregnant I got gestational diabetes and followed the diet to a T.  The nutritionist was really impressed that I switched over so easily.  Well, my son's life was in danger and I was having female issues because of the high blood sugar.  Of course I'd follow it.  As soon as my son was born, I grabbed the Oreos.  Not being able to eat sugar sucked.  Sugar free food is the Devil.  How anyone gets used to that nasty taste of 'fake' sugar...yuck.

So, I don't know.  Portion control is obviously an issue because I love how food tastes.  I don't just eat anything because it's here.  I wouldn't eat Ramen noodles if you paid me.  I also hate sugary cereals.  Most the food I have in my house is pretty healthy!  We do not eat white bread.  We don't drink whole milk.  We mostly eat chicken and limit red meat to ground beef sometimes.  The only yogurt I buy is Chobani greek yogurt (so good).  I don't really like sausage or pepperoni on pizza and it's something like Newman's or California Pizza kitchen.  We love fruit and veggies!  I try to avoid corn syrup and use natural peanut butter.

But then there's the snacks like salt & vinegar chips or reverse Oreos.  I can't keep ice cream in my house or it's gone.  My weakness is root beer floats.  I could possibly live on those and bacon, which is also not in my house.  The Goldfish crackers I eat by the handful are killing me.  I hate water.  God, I hate water.  Buying bottled water seems wasteful, but I won't drink tap water.  So we drink 100% juice, 1% milk, and the dread pop (soda) which isn't a staple here either.

You know, I'm pretty sure exercise would help too.  Just sayin'.

Not Ready but I Want

I don't know what's going on with me lately.  It's like I just don't care, or I have an excuse for putting everything off.  Maybe it's the shorter days or something, but I am not motivated.  Not with my clients, not with my home, not anything.  It's like depression, but I still feel happy just not motivated to do anything I should.  I find distractions like TV or the Internet or Xbox (loving Halo).  I don't know.  I do have a lot on my mind with money and the holidays coming up.  I have a feeling that's a big part of it, but it's still an excuse.  I bet exercise would reduct my stress...everything I read says it does. Ha!

I just want to look nice for the holidays.  I want to hear people ask me if I've been losing weight.  I want to be able to keep up with my kid when he runs ahead after school.  I want to wear cute clothes this summer.  I want to not feel HOT all the time!!!  I hate sweating.  Hate it.  You would think that alone would motivate me to lose.  Nope.  I want to feel good and not feel jiggly.

So I'm not sure where my happy groove of desire to work out went.  Or where my motivation went, period.  I just hope it's a blip on the radar right now.  I'm just grabbing sleep and food randomly when I have time right now.  So this isn't even going to be a very good weight loss blog at all until I snap the hell out of this funk.

Pizza & Soup

The election results are making me worried about what is going to happen in the future.  My son did not want to go to bed and was seriously stressing me out tonight.  I have tons of work sitting there waiting to be completed.  I"m going to be pulling another all-nighter to get it done.  I'm feeling stressed and I ate like crap.  I had two instant coffee drinks for breakfast, 2 frozen chicken nuggets, then a poptart for lunch at 3pm, random spice candies, too much California Pizza Kitchen frozen pizza that my son ate all the meat off first, another instant coffee to keep me up for work, and just now I ate a Campbells Chunky Italian wedding soup...and a bite-size Butterfinger.  I'm sure there will be more random candy to try to stay awake and it'll just make me sluggish and tired.  The nap I wanted to take earlier to help me stay up didn't happen.  The gym isn't going to happen for at least a couple weeks.  I'm just feeling a lot stressed out about my finances and my child right now.  I can tell in how I'm not even thinking about what I'm eating when I grab it.  Oh, and I did have about 20 grapes but also some puffed cheese things (not Cheetos ew).

I guess all I can do is have a better day tomorrow and not just give up.  Focus!  I need focus and commitment.

Hormonal

I want to eat all the chocolate in the house and then eat everything salty I can find after that and wash it all down with chocolate milk!!!

My ex, my work, and my body are all conspiring against me the past few days to pull me in a spiral of eating and then feeling bad about it.  I'm beyond stressed and I can't sleep at all.  Insomnia for weeks.  So fun.  I gained 2 pounds and I don't even know if I want to try to blame it on bloating.  Sounds like a cop out to eat more chocolate at this point.

So I did eat a few mini chocolate bars and then a few tortilla chips.  I don't know why I don't have chocolate pretzels in my house in case of emergency! 

I'm just annoyed and tired and stressed out.  At some point, maybe I'll figure out that exercise will help even things out.  Bet I lose more than 2 pounds here and there too.  Meh, whatever.

Sweet

Even though it's probably not completely deserved The Fat Chick  listed me in her 'consistently consistent award' followers.  Thanks!  I guess I better be more motivated and post more often.  I sadly neglect my 'mommy blog' just as much as this one most days, so at least I'm consistent in neglecting both equally.  LOL

So I suppose I should update for real.

I've been eating garbage and got garbage back for it.  2+ pounds gained for eating chocolate bars and pizza and ice cream.  Blech.  And I feel like garbage after I eat that stuff too.  Not only that, but I binged on it for a few days and felt completely annoyed with myself for grabbing whatever I might have a taste for and just eating it.  Then when I realize it's NOT what I had a taste for, I get annoyed and start looking for something else to stop the gnawing desire for something...anything that will shut my brain up for a while.  Ironically, the last time I did this it was a nectarine that finally fulfilled that craving.  I ate two and they were delicious.  Ice cream is usually my weakness and I've decided not to bring it into my home anymore.  I'll stick to my Greek yogurt (Chobani all natural) since it's in a single serving cup and I won't gorge on it.

Also of note, my stress about my finances and changing my income stream is having an effect on what I eat.  If I keep processed, lazy-making food in my house I eat it first and then the good-for-me stuff goes bad...because it's fruit and veggies!  So while I do need easy, fast-to-make food in my house for days I need to work and work some more but my kid still needs to eat, I have to keep the bad-for-me frozen stuff out of my house.  I'm going to have to try a Sunday all day cook for the week type thing and then I'll be forced to eat the veggies and fruits for breakfast, snacks, and dinner.  I'm all about the easy so I'm going to try this and see if it helps cut out the nasty processed freezer section food from my home freezer.  Wish me luck in this because Sunday dishes will be insane with this plan & I hate me some dirty dishes.

Back on Track & in the 220's

So I took a loooong break from even trying to get fit or lose weight.  I suppose it was bad timing to try to start with the new year, as I was immediately put under a lot of stress with school and trying to find a new place to live.  Sometimes I just know when to claim defeat and start again when the timing is better.  I know myself well enough that if I had tried to put that on my already fully plate then I would've beat myself up every day for failing.  Instead, I put it on a temporary hold.  I just made sure I didn't gain but hovered at about 235 or so. 

So here I am, done with school for the summer, moved into my new place, and feeling really good about life.  I have space in my new home to exercise and my stress levels are at an all time low.  I don't find myself in the cupboards looking for solace or stress relief in my snacks anymore.  I am also more active now that some of the financial pressure on me has been lifted. 

So the time to start again is now! I've already begun to lose without having added regular exercise.  I just hit 229 (technically 228.6)!  Woo hoo!! Haven't seen that number in... 2 years. *happy dance*  The best thing about this journey is that even if you 'fail' for a while, you can keep starting over and over until you reach your goal.  Heck, I failed at quitting smoking over and over for many years but I finally did it over four years ago.  So I know I can do this!!

I'm going to see if starting the Couch to 5K program will be possible, but not sure if it's feasible without a treadmill and no sitter for the preschooler here at home.  A gym is too pricey right now & when the boy starts school in September I'll have 3 hours to work out every day.  I guess for now there's always cable On Demand exercise shows or my Jillian 30-Day Shred DVD I put somewhere...

I feel good, and I feel motivated!

Lazy

That's me.  I've been doing a TERRIBLE job of this healthy thing and we're already into February!  I tell myself that each day is a new one to start over, and just don't give up completely.  It's hard not to beat myself up with the internal voice of "By now you could have lost XX pounds!" and to feel failure when I read about other bloggers' successes, but I can't be jealous if I'm not keeping to my resolve to be healthier!

Not as an excuse, but a realization of how I eat in times of stress, I had a really rough week last week and didn't track what I put in my mouth.  I just tried to keep sane & food was how I de-stressed myself.  Instead of trying exercise to relax, I found snacks (Oreos to be exact).  At least this time when I ate something not so healthy, I reminded myself that it doesn't mean I'm giving up completely and I could start over tomorrow.  I did almost give up when I checked one day and the scale read 238!  Up from my 234 average.  I cut back on the 'cheating' and tried to be more diligent & stopped eating those salty pretzels.  I did make some good choices during the week, like skipping the McD's when I was running errands with my son.  I really wanted to make excuses for stopping and eating fast food, but I didn't.  I find myself putting things down that before I wouldn't have given a second thought to eating.  Like the coffee cake from the vending machine at jury duty.  I ended up not having to wait as anticipated and gave it to my son instead when I got home.  I could've ate it in the car, but I didn't.  I have been eating breakfast every day and getting most of my calories in early, rather than in the past when I basically ate before going to bed - really late at night.  I also purchased a Better Homes and Gardens Cook Healthy Today cookbook that uses ingredients I normally buy or have on hand.  They're all easy and look delicious!  I have a weekly menu planned and will be shopping for the few things I need to complete my menu.  Most of my shopping has been in produce, which I know is good.  My better eating habits absolutely have me going around the edge of the store for food, and only a few things from in the middle.  This is VERY different from the heavy packaged foods in the past.  So now that I wrote all that out, I guess I have made some real changes.  Now if only I could find the exercise motivation to add to it.

I am a slug.  Seriously that's how I feel.  A picture of me is under couch potato in Wikipedia. Here's where I spew excuses....  I haven't found something I love to do yet that makes me keep going.  I tried Wii Your Shape and I don't love it because it has glitches that suck the fun out of it.  I don't have very much room in my 1-bedroom apartment between my son and I (& all his toys).  I work 50+ hours from home & I am a full time student online, which leaves barely enough time to feed and care for my child, let alone keep my house kind of tidy.  I'm not a morning person and no way I'm waking up even earlier to exercise, just won't happen & I'd kill myself trying to be coordinated that early!  It has to be when my son is asleep because he gets in the way (again space issues).  I'm also really sweaty when I work out, always have been even when skinny, and I HATE being sweaty.  It itches when I get sweaty & I have to shower immediately.  So it's not a 20 min workout, it's really at least 45 mins w/my shower.  Where can I find another 45 mins in my schedule???  At 1:00am?  A gym is pointless since in the winter I barely leave the house.  At this point anyway.  Money is also an issue with that as well. 

Ok, ok, now how to get past all those excuses!!!!  How to make room for my treadmill.  How to find a time that works for me.  Maybe working out with my son in the same room won't be as annoying as I imagine!  He does love yoga so maybe doing it together will help with some of the exercise during the week.  Maybe institute quiet time again where he watches a movie in the bedroom while I work out?  Then I can take a shower in peace too!  The space issue is a serious problem.  Not much I can do about that right now until I move out.  Maybe saving up for a Wii Fit might be the way to go?  I have to think of what it is that's blocking my exercise motivation and get rid of them.  I have to start exercising or this isn't going to work at all.

Three Pounds

I GAINED 3 pounds! I wasn't careful enough about what I was eating when I got stressed out recently. I ate junk for two days and I made excuses every time I put something in my mouth that didn't belong there. A chip or two there, a cookie, a few chocolate pretzels, and three pounds hopped onto my body. Honestly, I saw that and wanted to give up. Even though I made positive changed things like making a salad as one of my meals, and adding fish to my diet, gaining felt like it canceled out the good stuff too. Then I thought about it and it's giving me more motivation to lose all this weight! Anger usually translates to motivation in my world and I am angry with myself today.

I also need to start drinking more water. I HATE water! Those diet water flavors gross me out w/the diet sugar taste. Actually, I hate water that's not ice cold. I may have to invest in a filter, stock up on ice cubes, and/or keep a few water bottles in the icebox. Anything that makes it easier keeps me from making excuses or bad food choices.

I'm also going to put more effort into my workouts since I've been only half-hearted on that aspect. I need to just jump in and be committed and do everything all at once. No more easing into it bit by bit. THREE POUNDS!!!! *Sighs*

That Many Calories? Really?

I've been reading a lot of other bloggers who are on weight loss journeys in hopes I'll learn things that I'm currently clueless about.  One of those bloggers is JewliaGoulia who mentioned calorie intake causing a body go into starvation mode.  I would have never thought of this! So this is what the information says from the information I put in on the Women's Nutrition Guide

Your results for the Women's Nutrition Guide Calorie Calculator

These results will help you to know how many calories you need to maintain your current weight, and the number of calories needed per day to achieve your goal weight in a healthy, steady manner.

You need 2303.7 calories per day to maintain your current weight without exercise. (Oh heck no!)
You need 1920.8 calories per day to reach your goal weight slowly and maintain that weight without exercise.
If you reduce your current caloric intake to 1803.7 calories per day you will lose one pound per week without exercise.
If you increase your current caloric intake to 2803.7 calories per day, you will gain one pound per week.

Exercise and Calorie Needs
If you exercise for 30 minutes each day, you may increase your caloric intake to 2567.5 calories per day and still maintain your current weight.

If you exercise for 60 minutes each day, you may increase your caloric intake to 2897.3 calories per day to maintain your current weight.
If you exercise for 30 minutes each day, you will be able to reach your goal weight with 2138.6 calories per day.
If you exercise for 60 minutes each day, you will be able to reach your goal weight with 2411 calories per day.

Macronutrients
The United States Department of Agriculture suggests that approximately 50 percent of your calories come from carbohydrates, about 30 percent from fats, and approximately 20 percent from protein sources. One gram of protein has about four calories, one gram of fat has about nine calories, and one gram of carbohydrate has about four calories.

You need 288 grams of carbohydrates, 76 grams of fat, and 115.2 grams of protein per day for 2303.7 calories to maintain your weight of 235 pounds.
You need 240.1 grams of carbohydrates, 63.4 grams of fat, and 96 grams of protein per day for 1920.8 calories to maintain your goal weight of 145 pounds.

(I prefer a diet closer to what diabetics use. Carbs love sticking with me & I have a family history of diabetes.)

This is SO interesting to me and makes total sense when put like that.  I would've absolutely gone into starvation mode and given up completely when my body didn't melt off the pounds. Now I have a better foundation when I look at all the numbers on nutritional labels! 

Day 1 The Continuation

Weigh in at 8:30am to assess the damage as we begin twenty-ten: 235 *sighs*  Up 3 pounds from 2 days ago.

That's what I get for gorging on garbage foods the past few days before New Years. I feel so gross right now and my kid can have whatever left overs are in there. Blech.  The problem will be the chips & crackers and moderation.  Already I want to say I'll start tomorrow so I can eat crap today! Oh willpower where are you?

Getting fit wasn't a New Years resolution since I've been trying for a while, but I knew the holidays would be pointless.  I cannot be early in the weight loss process and have big holidays with food I love and pies to cook.  So I still kept some of my  smaller portions, eat a healthy breakfast, etc.  Today is the first time I've seen a gain of anything.  I guess that means it's the right time to jump back on the wagon!

Here I go!