Thursday, February 9, 2012

You just need to try harder...Pa-lease!

I was talking to a friend recently who has some of the same conditions I do. She was telling me how proud she is of the fact that no one where she goes to church knows she is sick. She has a power wheelchair that she doesn’t use, (even though she needs it) because she says people look at you differently, badly.

Most of us grew up hearing that we could accomplish anything if we try hard enough, overcome any obstacle with our sweat equity. We need to pull ourselves up by the bootstraps. If we just try hard enough….

Then along comes something we can’t change and can’t fix. We are willing to do whatever we can to not feel this way anymore, to feel and be more productive, healthier. Most of the doctors I’ve worked with have been great. But there are those who seem to feel the need to punish those of us who just “won’t” get better.

It’s hard not to give into the shame, the guilt of being sick with a an chronic illness that no one knows how to cure or its cause. The loss of control is very frightening. Knowing that we have medical conditions that we can’t change is enough to make the toughest of us tremble. We try harder, we get sicker, and end up tripping over those darned bootstraps! Not trying hard enough?!

I refuse to buy it.

I know who I am.

I know what my conditions have done to me. I know what I have done to try to manage my medical conditions. 

I know the before and after.

There may be times God may work with us through adversity, sometimes our adversity is caused by others behavior or our own.

Sometimes, it is simply our circumstance. We live in a mortal world. People get sick, people may stay sick, get well or pass on. These are simply the circumstances of our lives. It just Is. What in that is there to be ashamed of?

If God is working with us, that must mean he thinks we can become even better than we already are. The good news is that regardless of the nature of our adversity (all adversity), the nature of God can see us through all things, including the misplaced feelings of guilt or shame we may feel about our health.

There is nothing to feel guilty about because medicine may not have caught up with what we need to be cured. I was talking to a doctor once and commented on the fact that there is no test for Chronic Fatigue. She said, “Oh there’s a test for it. We just don’t know what it is yet.”

We may not have all of the answers Right Now, but that doesn’t mean they don’t exist. Where is the shame in that?

Tuesday, February 7, 2012

Anybody Seen My Immune System?

I was very psyched about starting my blog (finally) with the New Year. I got my first two post written and posted and have really enjoyed that. Then came the Bronchitis and the voice of the bass, which is impressive for any woman to accomplish.

And thus the story for my next blog. If you what to hear Chronic Fatigue Syndrome actually giggle, make plans.

Then it nudges it’s good buddy, Fibromyalgia and they start a big ol’ party! They are careful to invite the Diabetes, the Weird Back Thing, the hinky thyroid. They would never think of excluding the Asthma and Arthritis. That would be rude! Besides, those two are way too much fun not to include at a bronchial party!

Being sick is truly stressful. Just my “normal” sick is hard enough but when you end up with one thing after another over the course of a few months, you soon begin to suspect that your immune system has boarded a plane and gone to the Bahamas for the winter. So it wouldn’t get lonely, it seems to have taken my voice with it. 

Next time, I expect to be invited! 

Friday, January 6, 2012

So, who is this woman and why does she think she gets to write a blog?!


14 years ago I became quite ill. I had a bout with Chronic Fatigue Syndrome in 1989 which lasted a couple of years, but none of the Doctors I saw back then knew what it was.  That was pretty common then.
It came back in December 1998 with an amazing vengeance. It took 6 months to be certain what I was dealing with. I won my disability case on the merits of severe Chronic Fatigue Syndrome, severe Fibromyalgia, severe Asthma, and Arthritis.

Then a few years ago, I developed what my original Doc and I called “The Weird Back Thing”. None of the Doc’s I have seen have been able to determine exactly what it is, but they know what it does.  It is possibly a recurring virus in my back that wipes out the strength in my middle and lower back and abdomen and to some degree my legs. This is why I use a power wheelchair. I also was diagnosed with Diabetes about  3½ years ago.

I don’t tell you this for your sympathy, or pity but to hopefully share some understanding. 

Being disabled is hard work.

The paper work alone would kill most people, or at least drive them securely around the bend.  It happens to most of us at times.

What I want this blog to be about is that being disabled is hard, very hard.  Different people with different conditions have an enormous variety of things to deal with.  I want to share some of my experiences with you.  Not just the stuff that is so hard to deal with, but also the amazing blessings that come are at times mindboggling.  

Sunday, January 1, 2012

My 2011 Year in Review

There were:

Recurring UTI’s
Sinus and ear infection
Laryngitis
A bruised tail bone
Arthritis in new and annoying places
Bloating, (I mean 15lbs worth of bloating or more)
Serious Insomnia for months
Having to start insulin

and these are the extras!

There is always:

Chronic Fatigue Syndrome (CFS)
Fibromyalgia
the existing Arthritis
Asthma
Diabetes
The Weird Back Thing
and a few “minor” things to keep life interesting.

Oh, wait.

There was also:

Seeing my best friend from High School for the first time in over 30 years.
Friends who show up to help clean my apartment, help with shopping,
cleaning litter pans, mopping floors, dusting, supplementing my pantry,
listening, and are genuinely supportive.
A great friend who found a job this year after a 2½ year search.
There is sharing tears and laughter with friends and family.
Gratefully knowing that God knows what I am going through.
He hears my prayers and answers lovingly and kindly –
not always with what I think is best,
but thankfully, with what he knows is best.

Blessings and Adversity.  Both alive and well and keeping my life interesting!

I wonder what 2012 will bring. I'm rather looking forward to it.