Friday, May 25, 2012

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.