Saturday, July 31, 2010

a different ms day

I did wake up and go to Pilate's class on Thursday and I probably tried even harder than usual...that's human nature, that's me...
I went for a short visit with my daughter in the afternoon...my husband drove even though she lives only five minutes away...
and when we came home I napped with my pile of poodles.

My night was long, as usual...but I was focused on the next day and didn't let myself care...
My six year old grandson, Ethan, was coming to spend the day and the night, and that was all that really mattered to me.
Anything MS and being Tired would still be there like laundry or dirty dishes on Saturday when Ethan went home.

When my kids were little I would send them off to school every morning saying,
 "have a great day, be the best You can be!"
Well, when I'm with Ethan, all I want to do is be the best Gramma I can be...

Even though I had a nap, I'm really really tired now...
Ethan and I both had a great day
 and night
 and I think, together, we were the Best we could be...
so, sweet dreams for now and I'll tell you what we did...
 maybe... tomorrow...
good night...
-mara

Wednesday, July 28, 2010

another day with ms

Firstly, I'm choosing not to capitalize ms because I don't want to give it any more status or weight than usual.
It's just another day and I decided a long time ago that no day was all good or all bad with or without ms...

After a Very Long Night of waking Up almost every hour for a pill, my ice bag, to shift my body or go use the bathroom...
When morning finally came all I wanted to do was Sleep! 

My headache was priority which means that how I respond to my meds will shape my day...
at the absolute best my headache subsides, I'm a little tired, maybe dizzyish and I feel like I have a skeleton that floats above me made of icy bones.

Well, I swallowed the pill, moved from my bed to the family room couch followed by my three little poodles, also exhausted from sharing another night's ups and downs.

I fell back to sleep in a pile of poodles and woke with a start a few hours later...
By now I knew that this was going to be another day with ms...

I was glad that my writing group was on hiatus this month.  I was sorry that I wouldn't be pruning my roses and tying my tomatoes as I had thought last night before sleep eluded me.  My fingers and arms were tingling
too much to draw or paint and if I tried to finish the book I was reading my now low grade headache might come back...I was even too tired to chat on the phone!

I flipped on the TV for a little background noise, sometimes I just like hearing the voices and closed my eyes...
I dozed on and off most of the afternoon...
Finally, at about five I got up and took a shower, brushed my teeth and sprayed myself with a little of my Shalimar...
My husband had already planned a seafood salad for dinner but I managed to throw together a fruit crumble from the berries, cherries, apricots and white peaches he bought at the farm stand...
Remember, no day is all good or all bad...

Tomorrow I plan to wake up and go to my Pilate's class.  It's a different day and I have muscle memory to think about...

Monday, July 26, 2010

Pushing Buttons

This summer my perceptions about living with a disability have shifted yet again. This world that I thought I knew so intimately has turned upside down. All of my tender buttons have been pushed…


My beautiful, amazing thirty four year old daughter was just diagnosed with systemic lupus. So now, as her mom, I feel very small and quite powerless.

The relationship I have with my daughter has always been grounded by unwavering love. Comparing the symptoms of our autoimmune disabilities is not what I imagined when I held my precocious baby girl in my arms so long ago.

We have begun to discuss the FEARS of not knowing what lies ahead; the HORRORS of trying to adjust to medicine; and that now, after almost ONE YEAR of waiting for a PROPER DIAGNOSIS, having one is actually a RELIEF…

As we talk, the lines between us become blurred...

This emotion doesn't feel very motherly to me. I try not to feel guilty about genetics and DNA and whatever part that may have played, but feeling guilty does feel motherly to me

I was always like the mother bird that pushed her baby birds out of the nest so that they would learn to fly. In my heart, I know that my daughter can and will continue to fly high. I just have to remember that before anything else, I am her mom and must let her…

-mara

Monday, July 19, 2010

getting in touch with butterflies

hi...i'm working with the web people to keep things as simple as possible so if you'd like to email me about a future blog topic, the website, etc just click on the butterfly...
by the way, the butterfly is a collaborative effort of my six year old grandson, ethan and i...
last summer we started drawing sketchbooks full of butterflies and this year we added dragonflies.
one of the future blogs i'm working on is about being a 'disabled' gramma...

Friday, July 16, 2010

comments

to get in touch, just click on the word comments below the blog entry...
hope to hear from you soon
sweet dreams

Thursday, July 15, 2010

reflections

hi...
this is all very new and a little intimidating but I think the best way to get used to it is to just start writing...
even when I don't have something specific to discuss.  I do want to point out a special feature that the blog offers called pages.  I've chosen to use this as a personal notebook or companion to the actual blog.  I call these pages reflections.  You can look at this by clicking on the word reflections on the right side of the blog just above the butterfly.

Wednesday, July 14, 2010

hi

   If you've read our story you already know I have MS.  While that is major, there is so much more to who I am.  There is no denying that the MS is integral but it doesn't define me.  I am a wife, a mother, a gramma;
a writer, an artist, a former teacher.  I am a baker, a gardener, a reader, a dreamer, a friend.  And I am a woman who has a disability.  I have MS.
   To be honest, there are days when I feel like all I am is a woman with MS.  It grabs me from the inside and holds on so tight that it overwhelms me.  I feel tired and I don't want to face the day.  My positive identities disappear.  It's a complex relationship.
   When David began researching the website, I knew that I wanted to make a contribution.  As Disabled Discounts comes together, state by state, I'd like to create a space where disabled people and their caregivers share their thoughts and feelings, a place to talk about our concerns and feel supported by the strength of a community who understands us as individuals.