Invisible Illness Awareness Week

I never knew anything like this existed!

http://invisibleillnessweek.com/

Aside from his fading scar, my husband's coronary artery disease is invisible. My CFS is invisible, as is my hypothyroid, hypoglycemia, partial deafness, asthma, and degenerative disc disease and other arthritis and neuritis problems. And now that my labwork is showing I have an autoimmune disease, add that to the list.

I think I'll be spending a lot of time on that web site the next few days. 

How?!?!

How am I going to lose more than half my current weight and not wind up in the hospital, nuthouse, or cemetery?

I'm following a very low fat, starch based food plan, keeping the sodium under 2000 mg a day and calories between 1200 - 1400.

I'm getting 5 to 6 hours of cardio exercise each week, much of it in my target heart rate zone. I mix it up between different videos, the treadmill and exercise bike. Many of the videos incorporate weight and toning work, too.

I'm using meditation and relaxation techniques, along with an ACE inhibitor, to keep my blood pressure down, and sometimes it goes a little too low, so low I'm about to pass out.

I try get eight hours of sleep a night, but some days life just interferes and I only get 6 or 7. I've been making up for it on weekends.

And my weight still keeps yo-yoing between the same 4 pound weight range that's still 140 pounds above my target weight, as set by the cardiologist in December. I haven't lost any weight in about a month.

Is it any wonder why the doc recommended weight loss surgery? Well, that plus the fact that as a surgeon he's knife happy, and probably gets a kick back from everyone he sends for a consult to one of the surgeons in our hospital's brand new bariatric surgery section, modeled after the cardio-vascular center the hospital built for him and brought in big bucks to the institution.

My food is very bland, meals are unenjoyable, and there's not much of them so I spend the majority of my days - and nights - hungry. My hypoglycemia is acting up, some mornings I wake up so dizzy I can barely walk and find my fasting blood sugars 20 or more points below the normal fasting levels. Between the low blood pressure, low blood sugars, and under active thyroid that my doctor refuses to treat more aggressively I'm barely functional!

My body is falling apart. Because of the degenerative arthritis in my back, many of the upper body movements cause pain in my shoulders, neck and upper back and the sciatica causes pains in my right hip and leg. My feet, malformed to begin with (Thanks, Mom and Nana!), are even worse, with the constant pounding on them from various exercises aggravating the arthritis, fasciitis, tendinitis, and now my podiatrist says some bones are shifting out of position, causing not just more pain but affecting my gait, which aggravates the back and hips even more. My already wide feet are now wider than any shoe on the market so no matter what I wear they don't fit right and cause even more pain.

I consider constantly changing food plans, going for a calorie counting plan like Richard Simmons' Foodmover, or even following the DASH diet, which is not only very low sodium but low calorie, too. Then I look at what foods I have available to me, not just in the local stores but what money I have in my weekly food budget to buy them, and sigh. I looked at chicken breasts yesterday that were loaded with bright yellow blobs of fat and whose packages had small puddles of "chicken juice" comprised of not just blood but I'm assuming the saline solution injected into most chicken breasts on the market today. Ground beef is constantly getting recalled for bacterial contamination, and besides, it's usually too high in fat content to be considered a healthy food, and the lower fat version is too expensive. I know, I could buy a cheaper grade and par boil it and pour off the fatty water, but then I'm left with meat that tastes blander than the packaging it's in.

I could also switch to a vegan plan that relies more on fresh vegetables - greens, mostly - and fruits and restricts starches, but I can't even find enough ingredients for one decent bowl of salad per week and certainly won't be able to find enough to make a pound of salad a day. Then there's another plan that limits you to around 1000 calories a day of mostly starches and fruit and later limited veggies. I don't think all that fruit would be good for my hypoglycemia. I may as well stick with the vegan food plan I'm already on and just pay really close attention to portion size and maybe lower the calories down to 1000 - 1200 a day again.

My hypothyroidism is as bad as it's ever been, with my PCP refusing to raise my med dosage for fear of "blowing out" my thyroid. He refuses to believe the fact that hypothyroid can lead to high blood pressure, high cholesterol, depression, muscle aches, rosacea (Another ailment of mine that keeps me indoors a lot) and of course, weight gain.

I have no energy for anything by the time I finish my daily exercise. I have no mental energy to read or do any of my former hobbies, and I fall asleep at the drop of a hat, making watching even a tv show impossible unless I record it and play it back in bits and pieces. Most days I don't even get dressed.

So I plod along, constantly hungry and in pain, constantly tired and frustrated. I dread each upcoming doctor's appointment because I know I'll get reprimanded for the lack of weight loss each time, whether I lose or not. I have no energy to leave the house most days, and the few times I do it's never for anything pleasant, but for mundane things like grocery shopping or going to the laundromat or to care for the elderly relative with Alzheimer's disease. Her mind is getting worse, her finances dwindling, and we know that sooner or later we'll be forced to move in with her to care for her. Sure, she can afford live-in homemakers right now, but refuses them. We're lucky she allowed us to hire one to come for a few hours on weekdays for the winter. But her money won't last forever, so to keep her safe we'll either have to place her in a nursing home or more in. Since every nursing home we interviewed told us the same thing the assisted living place did last September, that they can't force her to stay there if she doesn't want to, we know we'll never be able to place her. With our luck, as soon as she got settled in and we were lucky enough to sell her house, she'll decide to go home, so the house has to stay, at least for a year, yet we can't afford to care for both her house and pay for a nursing home (Over $3000 a month), so moving in with her is the lesser of the financial evils. This is a woman without a friend in the world, one whose entire family hates her (Including us) and hates to spend any time with, even before she started showing Alzheimer's symptoms, a woman whose own husband used to yell at her to stop being such a bitch to her sister and go to her room until after we left if she couldn't keep a civil tongue in her head. When he husband died there was no one left to reign her in and she berated her sister, my m-i-l, until the day she died. She only has one other nephew and one niece, both live out of state, and both want nothing to do with her. Because we live the closest, her care fell to us. My husband is trying to find a way to have someone else - ANYONE else - take over, maybe make her a ward of the state, but so far no luck. He refuses to accept legal guardianship because of all the paperwork involved, mostly the financial side of keeping every receipt to prove how every penny of her money gets spent. She can't even remember to eat, much less where she spends money each week, which is why we only leave a small amount of cash in her place and took away her checkbook after she once handed it over to a contractor who knocked on her door and offered to do work for her and told him to make out any check he needed. We had to threaten him with legal action to get him to leave her alone and stop coming around. See why she needs someone to be with her as much as possible? I dread the day we have to move in with her.

Heck, I dread many things in life right now. This isn't the life I thought I would be living when I was younger. This isn't even half as good a life I was living even five years ago, five MONTHS ago. Sometimes the alternative does look better, to twist the old saying around.

Half Asleep

I wish my doctor would believe me when I tell him my thyroid is low and I not only need another lab test but an increase in my meds. I'm so tired I'm napping every afternoon and still falling asleep in front of the tv, some nights as early as 7 pm. I can't do the amount of exercise I need to do, even want to do, because I get part way through and experience severe muscle aches and tiredness as well as loose my "umph." Exercise isn't effective if you're just going through the motions without putting any effort into it. But the doc says I've been stable for 3 months and he feels there's no need for a test, no need for a med increase. Although even LabCorp finally dropped the reference range, my doc is one of those who feels any TSH level under 10 is fine and dandy. It doesn't matter if a patient has a TSH as low as 1.x and still feels like shit. His prescription is to eat less and exercise more. He gave me the same orders when I first complained about my chronic fatigue and hypoglycemia 25 years ago. Ah, an old story on this blog, not worth rehashing again.

Our main car, a 1996 (?) Toyota Corolla, is still at the garage as they try figure out why the brake lights stay on even though the brake isn't being depressed and the headlights aren't turned on. They already changed all the fuses and did a few diagnostics, but I guess it's going to take a while. A few years ago our other car, a Toyota Camry Wagon LE, had rear lights that wouldn't light, the opposite problem. It took four different garages before the cause was found and even then it was only partially fixed - the lights now come on but the inside light doesn't. That was the car that was hit twice in the left front bumper as well as was involved in the fireball when it was parked next to the garage when the gas station we had it at (for those electrical repairs) exploded. Aside from a few minor dings and discoloration in the back tinted windshield from the heat of that of that fire in 2003 the car is going as good as new.

Soup and homemade bread for dinner yesterday and today again. Butternut squash soup and bread yesterday, minestrone soup and sun-dried tomato bread today. Tomorrow is our 31st anniversary - pizza!

Gotta go get my Amazon order in. MXC discs 4 and 5 finally came out today, as well as Scrubs season 7. I still didn't finish watching season 4 on DVD. As soon as those discs were delivered the episodes started playing in constant rotation on Comedy Central. But MXC - a.k.a. Most Extreme Elimination Challange? We've been waiting for these discs for ages and will watch them at least a dozen times, then start with season one and watch them all over again.