Working For A Living, Part 2

 

I’ve been thinking about what I wrote in Working For A Living all day. It all started because I need more money to live on. My rent is almost my entire monthly check, then there’s electricity, cell phone, internet connection, van insurance, food, gas, pet food and meds, tithing, haircuts, etc…  $573/month is impossible to live on. That’s why I was homeless so long. If I didn’t have money to drive or to camp or whatever, I found a parking lot or a field to stay in until I had more money to spend. It’s not that easy as an apartment dweller.

I was talking to a couple of brothers from church about me being in limbo financially. I have money owed to me, but no money now. If it wasn’t for my church,  I’d still be homeless. The problem is this being in the middle between nothing and something. One brother suggested I get a job.  I’m sure it was innocent enough, but that got me thinking about just how unsuitable I am as a worker of any sort.  That depresses the heck out of me. 

I LOVED being self-employed. Those were some of the best years of my life. I worked very hard when I could, and not at all when I couldn’t. That’s why I wrote part 1. I loved being a chef and I really, really loved my farm and homestead. I feel guilty and ashamed at not working.  It has been a many year, long, tough struggle to deal with the issues of self esteem and self worth as a disabled person. When I have to admit my limitations, I feel BAD.

A few months ago a brother asked me to translate census forms from the 1800’s to the computer. I thought that was going to be fun until I tried. I have never been able to read cursive very well. All my life I handed cursive letters to my friends and family to read to me. Others suggested I do the online tutorials about deciphering, which I did.  At some point I realized the REAL reason cursive has been difficult my whole life!  THAT made me realize why I cannot read emails written in all caps! An aha moment.  It’s because I have “regular” writing memorized. I see it double, but my brain can decipher it. Any other kind of style and it’s a struggle. That should not embarrass me, it’s just a fact of my life, but it does, because it feels like saying “I can’t” will be interpreted as “I won’t”.

Many of my problems are because I am not like Kasia who wrote the matter-of-fact email about what it’s like to have MG and how she uses fans. She  doesn’t feel guilty. She understands what is going on with her and states it without embarrassment. I need to be more like her and quit feeling so guilty about EVERYTHING. I justify my feelings and circumstances to people constantly…as if I am not allowed to be who I am. I try way too hard to please everyone but me. I hate making other people mad or offended. I wish I could stop being so darn accommodating to others and do better at taking care of myself. For one thing, they won’t know what my challenges are unless I tell them. I try to be super woman so much that folks have no clue what it’s like to be me. I’m way better at writing than speaking.

Pondering this stuff all day has given me a lot of insight… 

Doing Our Best with Our Families

“Sometimes as parents we feel we have failed when our children make
mistakes or stray. Parents are never failures when they do their best to
love, teach, pray, and care for their children. Their faith, prayers, and
efforts will be consecrated to the good of their children. . . . No family
has reached perfection. All families are subject to the conditions of
mortality. All of us are given the gift of agency–to choose for
ourselves and to learn from the consequences of our
choices.”

(Robert D. Hales, “With All the Feelings of a Tender Parent,” Ensign, May 2004, 8

Just had to share this

I was looking up stuff about fans and MG and found the following letter from a woman I know. I always love her writing What she has to stay is absolutely my experience…but she is better and funnier at saying it!

 

Heat to an MGer is like water being splashed on the
Wicked Witch in the Wizard of Oz. I kid you NOT. Your
muscles relax to the extent that they feel like jello - soft and immobile and
totally unable to support you. Your legs quiver whether or not you use them. If
you try to stand or walk, they may collapse under you without notice. Falling is
a very real and present danger.

Your chest muscles feel so heavy. It’s like an elephant is sitting on your
chest. Deep breathing (which is difficult at the best of times for most MGers)
is well nigh impossible in heat. Heat, to most of us, is any temperature above
75 degrees Farhenheit and humidity above 75%, too. These conditions are LIVING
MISERY for MGers.

In the above-described state, coherent thinking is tough. Movement of any
coordinated kind, is completely exhausting. The best place for us to be is an
air-conditioned room. I have put my head in the freezer in the dead of a
Pennsylvania Winter just to regain my ability to function. I have used fans in
our bedroom and the kitchen in the Winter time, too, because I was overheated.
The room temperature was 62 degrees and I NEEDED to run fans in order to be able
to move and more importantly, breathe without a superhuman struggle.

We are NOT wusses. We are not wimps. We cannot tolerate heat and humidity.
These conditions devastate our weakened bodies. Period. No ifs, ands or buts.
Believe it or else. End of story. ‘Nuff said.

This and That…

 

When I went outside this morning there was an X in the sky.  So much for the weekend of blue skies. I guess it’s back to work for the  planes.

My myasthenia has been acting up big time.  Part stress, part environment, part luck of the draw, I guess. After yesterday I didn’t think I could possibly have any tears left in me, but I do. MG causes me to choke on everything and nothing. I had a whopping good dose of choking this morning. I choked until tears streamed down my face.  Now I’m wicked bad dizzy and my ribs and guts hurt from the force of all that coughing. Ouch.

I’m really missing my supplemental oxygen lately.  When I put on my CPAP mask, I find myself struggling to get enough air. The veins on my neck hurt again and I just plain feel like I never get enough oxygen. There’s a great heaviness in my lungs. I breathe more often and with more force, giving me a very sore rib area down near my diaphragm.

I’ve always wondered about me and fans. Why do they help me breathe better? Maybe I will try Googling that for an answer. 

Gray skies, a breeze and falling humidity and temps. The weather is changing again. Seems like it’s often a yo-yo of heat and humidity and cooler air with fire advisories. I mostly like the cooler air. It’s funny to watch Floridians when it gets to 60 or below.  The kids go off to school in puffy winter jackets that Vermonters would  only wear at well below freezing. Floridians get to be amused by me when it’s over 80 and I am sweating profusely and bright red. To them it’s a mild summer day. I still wonder if I will ever adapt to Florida summers.

Hmmm…someday when I’m rich, I need to buy some refrigerant for my van’s A/C system. It won’t be much longer until I need it to survive going to the grocery store

 

He Is Aware Of Your Needs

 

As you strive to become a quality person, commune daily with your Heavenly
Father who knows you best of all. He knows your talents, your strengths, and
your weaknesses. You are here on the earth at this time to develop and
refine these characteristics. I promise you He will help you. He is aware of
your needs. He is aware of your unanswered prayers.”

Marvin J. Ashton, Ensign, Feb 1993, 64