Simply put … depression

The blanket of depression is just getting heavier and heavier. @$$#^!&

I dream of a day of having the luxury of being able to travel whenever and wherever I want again.

I dream of having reliable help/assistance when I need it.

I dream of someone willing to occasionally cook, clean, and pick up things at the store.

I dream of not having people around who promise to help and then disappear.

I dream of people saying what they really mean and not what they think I want to hear.

I dream of being around people who truly accept me for who I am.

I dream of having friends who don’t call me only when they need a favor or want to be nosy.

I dream of having people around who truly appreciate the help I provide them when they ask for it.

I’ve heard countless times from people who say I’m one of the strongest people they know. Inside I laugh. They don’t witness the meltdowns. They don’t feel the heartache and frustration. They don’t experience the inner struggles with worthiness. The don’t hear the daily dialogue between my mind and body of chronic ailments.

I look fine so I must be so?

If I had the energy, I’d just punch the next annoying, nosy, fair-weather friend in the face.

One-year Anniversary with Imuran

July 19 marked the one-year anniversary of my relationship with Imuran (aka, azathioprine). It’s been one hell of a time. The first two days were fab. The next several weeks were pure hell as Imuran was not going to allow me to keep anything down. MG was being its typical asshole self the whole time. Hair started coming out in a major way after four months or so on it. It was around that time that I started noticing that I was better able to make it through a few extra hours each day, but when I crashed, I crashed hard. Today, thanks to letting go of a major stressor (my former employer), and having a little more time to rest when I need to, things have become a bit more stable. I still crash, but it isn’t as difficult to recover. My hair no longer comes out in clumps, just cycles of major shedding then new growth (all gray ). I still occasionally experience bouts of nausea but all in all, Imuran and I are getting along to fight the MG demon. Perhaps this time next year I’ll be able to walk one or two miles of my former four-mile route around the lake.

Happy Anniversary, Imuran!

Double Standards

I’m a bit behind on posting the latest and greatest MG adventures. I’ll get them up soon.

In the meantime, please check out this post from a fellow MGer, which explains how many of us (MG and other autoimmune disease sufferers) feel on a daily basis.

Gotta love double standards. Just want to punch ’em in the face!



And for the record, this post is not a plea for attention. Just a plea for understanding.

Of food and dieting

Food. It’s something we all need to live. It’s sad that a lot of people are emotional eaters—they eat when they’re depressed, angry, bored, etc. Some are addicted to taste. Then there are those of us who have to be forced to eat when we’re upset. Personally, I’ve never been one to eat when upset. Food quickly makes a u-turn if I eat while upset. I like my food to travel one way—south.

I’m one of those people who has always had a sensitive digestive system. Food constantly made u-turns as a child. No, it wasn’t my mother’s cooking. She’s an amazing cook. I’m just über sensitive to a lot of things.

Given my many food issues, you’d think I’d be as thin as a rail. I was…until my late 20s when Celiac disease and a wheat allergy were uncovered. My poor immune system went from being kind of ok to being a war zone and I’m apparently the enemy!

I see so many people around me on various diets. Good luck to them. I’ve never been one to follow the herd. I’ve gone through all sorts of eliminating this and eliminating that over the years. I’ve tried low-carb, higher protein (I’m a vegetarian so this is challenging), no processed/refined sugar, no this, that, and the other. I’m done giving up stuff.  I will eat whatever does not upset my stomach. It’s the Don’t-Upset-My-Stomach diet. If it makes tummy unhappy, it will no longer be consumed. Period.

I have been on high doses of prednisone since October of last year to help with myasthenia gravis symptoms. This little necessary evil pill has added a lot of extra weight to my 5’5” frame. A lot of it has actually been water weight. Regardless, it has been very uncomfortable. I swear I slosh when I walk! My neurologist, seeing that it has not helped me and has only caused more suffering, started weaning me off of it in May. I’m finally seeing some of the weight come off! I’m one of the fortunate prednisone consumers who did not develop the insatiable food cravings. In fact, I think I’ve eaten less since I’ve been on it because my appetite has gone by the wayside. I haven’t even wanted chocolate in a couple of weeks!!! That’s just wrong!

I had one very brief chocolate craving. It went away in about five minutes without me eating any. A miracle, a sign I’m really sick, or just the Universe doing me a favor? I guess I’ll just go with it.

Here’s hoping the weight continues to drop off despite me not being able to exercise the way I used to.