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.

I Almost Died but Didn't

About 2 weeks after my last post in October, just before Halloween, I went into the ER with pneumonia. A few days in the hospital on antibiotics led to respiratory failure, my being intubated on a ventilator, and put into a medically induced coma for about a week. This is the first time I've wanted to write about any of this. Maybe because after almost six months of being in and out of the hospital, I finally have a final diagnosis and I feel almost normal - outside of the physical damage that was done.

I officially have Polymyositis with Interstitial Lung Disease. It's a rare connective tissue (muscle) autoimmune disease with breathing issues. No definitive cause is known, but it means I'm on meds my whole life and I'm officially disabled. I can't lift my arms up over my head, and I can't lift my legs at the hip more than an inch or two right now. I'm in physical and occupational therapy to fix this and I hope to be back to normal in the months to come. I just have to stay on my steroids and anti-transplant rejection drugs forever to keep from a relapse. After experiencing what happens without these drugs, I'll gladly take those two and all the others given to me. I couldn't move without massive pain and my hands wouldn't open or close. Yay drugs, boo side effects.

It started with pneumonia. I couldn't catch my breath so I went to the ER. They admitted me, but I didn't get better so I went to the ICU. Just hours after I got to the ICU, the last thing I remember is saying I couldn't breathe and my chest hurt. Then it goes blank until I woke up a week later. My family says they gave me about a 50% of living while I was out. The hospital basically threw everything they had at me to keep me alive. I had crazy dreams from the drugs, and my son is what I remember most from the dreams. I had a tube down my throat and couldn't talk. I wrote on an eraser board the best I could, and a rolled my eyes a lot when I got annoyed, frustrated or angry. I did that a lot. Not being able to talk sucked. I did make a joke to my stepbro with hand motions (that didn't make sense to anyone but me) when I first came out of the coma. At least I kept my sense of humor, right?

Being in the ICU & having lost the ability to do anything on my own was humbling. Remembering the first time I had to stand up from the bed with a nurse's help is what keeps me going now when I get discouraged. Thank goodness for Xanax because that was the scariest moment of my life, after having been mostly immobile in a bed for weeks. Actually, the bill from that time is pretty scary too. My legs didn't work, my arms only moved at the elbow, and I needed help with everything. I'm trying to forget the tubes being removed and the other help the nurses provided. I could never work in healthcare, ever.

I went to the rehab unit for physical and occupational therapy, but the coughing from the pneumonia made everything so hard. Breathing is usually required when you exercise and I was struggling. I finally was able to walk up stairs and do a lot of my basic care and went home just before Christmas, even though I wasn't 100%. I was supposed to finish my rehab as an outpatient. I felt good and ready to go, but no such luck.

A week after getting home, the first week of January, my mom was here helping me and my right arm swelled up. Back to he ER! I had a blood clot in my right jugular. I was put on blood thinners and had to have my blood tested every week. I also would start to wean off the steriods/prednisone and get sick. I was in the hospital every month, if not every other week almost. I finally had to switch to a larger hospital because they'd had more exposure to my first diagnosis of ARDS - Adult Respiratory Distress Syndrome after pneumonia. I've had so many CT's and Xrays of my chest that I glow in the dark. I have about 8-9 DVDs of images from thouse and the ultrasounds to EKGs that it's just ridiculous.

Once I changed hospitals, I got better diagnosis of what was going on, but everyone kept looking at my lungs as the issue. Finally, this last episode of muscle weakness caused such distress that I couldn't even walk. A muscle biopsy was done along with many other tests, and I joke they went all Dr. House on me, but they found out I have an autoimmune disease. Finally! I was just happy to know what was going wrong with my body and how I can manage it in the future. Once I got into therapy, I rocked it and made super progress. Only two weeks in rehab and going from barely walking to being able to take care of myself at home. The doctors are super impressed and I'm really motivated to get better.

Yeah, it sucks I'm now permanently disabled, but it could be so much worse. My meds will help me get better and therapy too. The worst part of all of this? My son having to go live with my ex-husband until the end of the school year. I miss him more than anything, but I know his being with his dad is the only way for me to get well enough to bring him home. I see him this weekend and I can't wait. There so much more I have to say, but it's time to eat and take more meds. Here's to getting better!

Strep Throat

Well, sure enough I got myself sick by burning my candle from both ends and from the middle!  The strep came on so gradually, and I'd never had it before, so it got its claws in my throat nice and deep before I got it treated.

It's been a week since I ate solid food.  From last Sunday to Saturday, all I had was liquids and not even filling ones.  Everything burned so bad when I tried to swallow, even pudding and jello!  I had 1% milk, tea, hot cocoa, and coffee to keep going.  Work didn't stop coming in while I was sick.  My son didn't stop needing me when I wanted to cry from the pain.  He's sick as a dog too, but of course not with the highly contagious strep but with a hacking cough. *sighs*

Sadly, I thought I'd lose weight from the all-liquid diet all week, but it's not looking good.  Normally I weigh right when I get up before a shower (naked) and was at 127 the Sunday it started.  On Wednesday, I weighed mid-day, fully clothed and was at 134.  How is that even possible?!  HOW?!  I'm doing a real weigh-in when I get up.  I'm totally blaming PMS and 'water' weight. Hmph!

I'm also working my butt off this month to be able to add that gym membership to my budget in January.  Ohhhh, since it's just the membership sign-up fee that's really pushing it out of reach, maybe requesting it as a present from someone in my family!  Ha, I'm brainstorming like the Imagination Movers my son watches.  Must follow up on that idea later.

I'm headed back to sleep feeling more positive at least.  Now if only my household could shake these colds we keep getting.  The resting  part of sick I'm all for, except my son didn't get that memo.  Crazy kid.

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.

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.

Aches and Pains

My body hurts in all kinds of places.  I know some of it is from the extra weight I'm carrying around on my body.  My hips hurt mostly.  That's partly because of this God awful couch I bought online that is like lounging on a rock.  If I were a lizard sunning myself it would be great. I'm not.  I'm sure the 80 or so pounds I need to lose aren't helping when all the pressure is placed on my hip when I 'relax' on my couch.  I really just need to sell it and get a new one.  My knees hurt too.  Usually when I'm down on the floor playing with my son and I have to get up.  Things usually pop and crack when I get up.  That can't be good for me.  I had knee problems as a teenager and I really would like to avoid them now.  My feet hurt if I stand for too long.  They hurt if I walk at the zoo all day with my son.  They don't fit in my cute shoes right.  I hate it.  I thought my cute shoes were the one thing I would always have.  I mean, the whole knee-high boot thing is a nightmare for me anyway.  I come from thick-calved genetics and even on my thinnest days they don't fit me.

I think the worst pain is the pain of not being happy with how I look right now.  Every day I wonder how the hell I got here.  Okay, I know how - stress, baby, divorce, unemployment, homelessness, etc, etc.  Now how do I get out of it?  Where do I find my motivation when I feel defeated before I start?  I know all the things I need to do to make it happen.  I know and I just don't know where to find my motivation.  I know if I started exercising regularly the pounds would start dropping off and that would be motivation enough.  Now if only I didn't get itchy after I start sweating that might help too.  Who wants to sweat and then itch?!  Like working out isn't pain enough.  I guess I'll have to figure it all out.  Soon.

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.