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.

NaBloPoMo NoMo

Done.  Just done writing every day about my failure to eat right and exercise.  I'm so beyond stressed out right now with the holidays coming and money super tight.  I just need a break for a minute and this is one less guilt trip for me to worry about.  Seriously, I put a cookie in my mouth and thought about how that's going to make for more crappy blog fodder tonight.  So I don't know if I feel like writing tomorrow I will, and if not well whatever.  I'm tired and worn down from being a single mom with a strong-willed child who will not go to bed and just wears me down until I'm just so done.  I'm not going up or down either way so maybe when I can afford that stupid gym membership or get motivated to move around in front of my television to videos, then maybe I'll feel better about writing about the progress I'm making.  As of now, this is not helping me feel better at all.  That's not what I need right now.

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.

Wordless Weekend Goal

Wordless Weekend

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. 

Back on the Wagon

Ok, I'm back and recommitted.  I'm joining a gym nearby and getting myself together.  I gained almost everything back I lost and I'm pissed.  I'm tired, I'm grumpy, and most of all my body just feels achy all over.  My job isn't exactly conducive to exercise, but now that the boy-child is in school 1/2 day, I have no reason not to work out.  I find that I do not work out at all when I come home.  My intention was to work out at home while he was in school.  I always have an excuse not to.  The gym is on the way and is priced reasonably.  It's not a place where people were hitting on each other, wasn't crowded at ALL, and all shapes and sizes were working out when I visited.

Weight tonight: 232.

Also, I will be updating all month as I joined NaBloPoMo and I'm looking for motivation anywhere I can get it as we go into the dark, winter months.

15 Pounds!!!

I just hit the 15 lbs lost goal!  Of course, my 4 year old has hidden my camera and we're going on day 3 of looking for it.  So no picture.  :-( 

This is the most I've lost consistently in forever.  I'm on a roll and I'm super excited.   That's half the weight of my kid I just lost. Hooray! 

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.

Weigh In with Current & Goal Pictures

Weigh in: I'm at 227!

Not much from the 228.6 but the consistent small loses mean a lot to me right now.  I feel like I'm actually making progress and some of the things I had hoped to do when I started thinking seriously about weight loss can now be continued and built upon.  Hopefully keeping the pictures on here will remind me of my journey so I don't loose motivation.  Since I love seeing other bloggers' photos of their progress, I'm hoping to do that for mine as well.  The photos from an old post are the start and the goal.

I wrote this on my family blog around my last birthday 9/2009 (edited for clarity):

I've always had issues with my weight. It goes up and down over time but I've never been as stressed over it like I am now. I used to love almost all of my body and how it looked. My calves and I have a love/hate relationship. Now, I'm the heaviest I've ever been and I weigh the same now as right before I gave birth. I added the baby weight back on rather than losing it. I only blame myself for letting it get out of hand, but now I'm going to be accountable for losing it rather than hiding it and being embarrassed about my size. The weight-loss ticker to the left is going to keep me accountable and honest about my progress. I already had to add pounds before I got to take pounds off.

I come from a line of heavy people on my paternal side, and know the health issues that come with it. I'm at risk for Type II diabetes, genetically and due to my gestational diabetes which vanished (thankfully) after Noah was born. I have terrible eating habits because I'm not disciplined and it's easier to snack at a computer than to stop and eat a meal. I work at home and my classes are online, so I sit in front of a computer for 15+ hours a day if not more. My son thinks my treadmill is an indoor jungle gym. Having had my gallbladder out makes things complicated as well.  The one thing I can say positive is that I quit smoking in 2006, which is never a negative even if it added pounds! 

The problem now is that my weight is causing me to change how I feel and act around people I know or just meet. I'm embarrassed to go see old friends who knew me when I was thinner. I constantly wonder if I'm dismissed as 'the fat chick'. I look in the mirror and I hate how round my face is and that double chin (omg I just said that out loud). My belly looks a mess with a yucky flap thing from carrying a kid. The only reason I don't really have serious wrinkles is that fat is less painful than botox for keeping them away. I don't feel good at all about any part of me. I have cute clothes in my current size (18/20), but I'm not happy at all about how I look in them.

My average weight is around 145-ish, but I was down to 125 (bad breakup) when I met my ex-husband.  I emotionally ate while I lived in AZ until I was 170 and thought that was the heaviest I'd get and had ever been. Then I got pregnant. I cried at 200, my 'max limit weight'. I got up to 235 but was at 208 after the baby. I haven't been under 200 since Noah was born. I'm ready to be back down to at least 150 max. I have a long way to go.

So this is my leap into better eating and then I'll try to add the exercise in slowly. I've failed before by trying to revamp my whole lifestyle and gave up when it was too much at once. Exercise is going to be the harder part of this whole thing. I am NOT a motivated person. I know what I should do, but putting it into action isn't my forte. So healthy eating first, and exercise once I've got a better diet down pat. Slow and steady is going to win this one.

Small changes I've made so far:

• Replacing ice cream with sugar free yogurt when I need something sweet. This seriously knocked my caloric/fat intake down a LOT! I love ice cream.
  
• Diet pop and sugar free flavored 'water'. I HATE plain water, hate it.
  
• Eat breakfast! Usually Greek yogurt, my new love, with something else. I don't get as hungry during the day when I have breakfast.
• Reducing meal portions by half and only eating a little when feel hungry. Just not overeating then feeling gross afterward.
  
• Pour any snacks into a very small bowl so I don't overeat. Small bowls and plates are my new friend.
  
• Realizing if I'm emotional/boredom eating or if I'm really hungry. (The hardest one to manage)

I've lost almost 5 pounds so far. I feel motivated. I know I can do this. I changed my diet almost overnight when I was gestating a child and our health was in jeopardy, and I've put those nutritional rules back in place. My health IS in jeopardy if I keep going this way! I do have to be careful because I don't have a gall bladder (past starvation dieting), and if I don't eat I end up with major gastric issues. This doesn't let me starve to lose the weight, which was always my go-to in the past to maintain things.

I am going to get back in my 'skinny-self' jeans. I won't be embarrassed to be in a swimsuit at the pool next year. I will have more energy to play with my child. I will be healthier to teach my child good eating habits. I won't hate my body anymore. So I'm putting it out there, and that ticker will be going down instead of up now that I know people will be watching! ;-)

Summer 2009 at almost 240:


Goal #1 at 165, can't find any for 145:

Smallest at 125-130 lbs:

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!