Wings

Not big into wishing, but if I were, and if I had one today, I think I'd wish for wings. It hurts too much to walk on my legs. It hurts too much to sit in my wheelchair for more than just a couple minutes at a time. But, I want to move around the planet, too!! Need wings, please. If anyone has a spare pair, I will barter with Twiddle Muffs. Agreed that its possible that the wings could then hurt and there'd be a possibility of just more of me hurting, but I'm willing to risk that at this point. I am OVER just sitting/lying here. Using my spurts as they come, but those feel and actually are so short, so, so short. It stymies me how I can continue to forget how bad flares can be. It is not NORMAL to think that, oh, maybe cutting off my leg really might be a viable solution to this situation in which I find myself. I have another leg. Already have the disability tag and permission to ride the bus. It would be a lot less of me to hurt. Its's amazing. I am actually justifying the idea of cutting off my leg. Who'da thunk?

Grateful that I have neither the strength nor the mental energy to take the plan any further than that. God knows exactly, precisely how much thinkin' I can handle today.

Have happy days.
M

PS, Need wings please.

Not a helpful post

For any of you who read this blog hoping to glean tips, today is not for you.  Stop reading now.  And to my family, this isn't for you either.  Stop reading now.

I am not doing well.  Not coping well.  I've had a migraine for many days in a row now.  Pain level is severe.  So, on top of that challenge basket, my beloved kitty is very, very sick.  She collapsed on Thursday.  We've been to the vet on Thurs, Fri, and go again tomorrow.  She's shown no improvement whatsoever with what we are trying.  In case you don't know this about me, I am an empath.  I feel the energy of others.  It drains me.  I feel what they feel. (This is why I cannot tolerate a crowded place, or lots of voices,  I take in that energy without wanting to.)  It is my very strong intuition and feeling that she is leaving us and we are gifted with these few days to say goodbye.  She cannot lift her head, stand, etc.  We are syringe feeding.  I am spending all the time I can here in the nest room I've created for her.  The energy is rough on me.  It feels like my brain will start to leak out my nose and ears at any moment.  I think what is going on with her is neurological and in her brain.  That's all I will say now, except that my illness is the reason she is in my life.  She has witnessed every moment of my pain.  Not sure any greater bond exists in my universe.

Secondly, I am terrified that in fact, I have something called EDS, which those who want to can google.  It is worse than fibromyalgia in that in severe cases, the median life expectancy is 50 yrs.  I will turn 48 in 2 months.  I don't know what guided me to read about it, but, the more I read, the more I think I have it and the fibro is secondary to it.  Anyway, I have reached out to a local support group and thankfully some kind folks are going to guide me to a good geneticist.   Unlike the fibro, there are definitive tests that can be run to see if I am in this category.  Like the fibro, incurable.   I really am trying not to be terrified but, truly I am.  Have not yet told my sweet husband about this new thing since it crept up just as Evy collapsed the other day.  Both happened at once on Thursday evening.   I will tell him what the new doc says after I go.  

I'm in the darkest room of my house, and it feels like punishment to open the door and go out of it to the bathroom.  I want so much for her not to be alone.  And, I cannot tolerate any light or sound anyway.

I told you, not helpful.  I hope you didn't read this Mama.  It is never, ever my intention to create bad feelings among those I love in these writings.  Please don't take it on yourself to feel sad.  It is just that this thing, these posts, connect me to the world.  I am largely disconnected, very much so.  But, in reporting about my small and seemingly insignificant life, I can still stand back and observe, yes, my life is so valuable.  You know?

Grateful that Evy hasn't been called home yet.  Prayerful that if that is God's will, He takes the decision away from us.
Have lovely days/
M

10/11/2016

Today is our wedding anniversary.  Eight years.  Met and became a couple four years prior.  I was in a remission from my symptoms for 14 months, including all of 2008.  So, that's when we married.  So happily married.  Just plain old blessed.

Taking a bit of time this morning to put some things down here.  Had just a lovely vacation with my family last week.  The best visit with my parents/friends/heroes in recent history.  In reflecting on why that might be the case, I realized that they were really primary caregivers for their dying daughter and helping raise her small children until she passed away last year, and now, they wear only one of those hats.  The other, blessedly, is lifted.  It was my first visit without Moni there.  I wondered how it would feel.  It felt fine.  Normal even.  I miss her, but, her presence is everywhere in both my folks home and in my brother-in-law's home.  Everyone talks about her freely and easily, and without sadness.  With joy and laughter at who she was, and that we were lucky enough to know her.  So, I'd say, it felt lovely.  Ideal, even, if there can be an ideal in the face of grief.  Not to say we are all not grieving still and missing her, but, the family is functioning in the face of the grief, I think.  I might be wrong, but that's my takeaway feeling.

I had an opportunity to watch my wedding on video for the first time.  Monica read the second reading.  Megan was about a year old.  This was before she was diagnosed.  It was such a gift to see and hear her read my favorite "Love is patient, love is kind...." that I picked for that reading.  I hope the rest of my family get to see it soon.

I've been up and down with flares, battling these headaches which continue to just plague me.  I did take more medications on the airplanes and during the trip than I'd have liked but, I decided to use them to just keep comfortable.  I'm not sure why I feel the need to justify using medication prescribed to me.  If it wasn't necessary, doctors wouldn't have given it.  But, yet, I feel the need to explain.  I will say that I am glad I had such medications at hand on the flights, and at other times during my stay.  Quality of life isn't something to toss away because of the narrow-mindedness of "not wanting to take pills".  None of us do.  For some, the need is there.

We've added another dog to our family.

 Katie, a Cairn terrier mix, is about a year old.  She's quite energetic and playful.  Just a bit destructive of soft stuff like pillows, and plush toys.  I should actually be working with her right now instead of writing since she's currently out on the patio just worn out tired.  Evy tolerates her, and she doesn't push herself on Evy, which is the best we can hope for with our elderly kitty.  Oscar and Katie are great buddies now.  It has been so fun to watch him play with another dog every day.  Something he clearly loves, and never got to do.  She fits in our home very nicely and is just as sweet as she can be.

Loving the fact that it is now fall.  Being able to stay outdoors for more than a minute at a time can be a game-changer.  It is just lovely now.

Discovered that the large tree in the center of my backyard is a pecan tree, which I love.  We gathered them every year as kids, and church members would bring us brown bags full.  Now, all I need is a nutcracker.

Constantly adjusting my thinking so I keep my head straight and away from negativity.  Tim is much happier at work in this new team he's on so, it is a huge relief to us both regarding his frame of mind.  Positive mindset is easy some days, others, it is really an effort.  Storytellers, whether they be authors of books, movies, tv, etc, generally don't tell about how hard day-to-day can be sometimes.  They tend to tell about overcoming a single big obstacle, or a series of a few, and then life is smooth sailing.  I won't have smooth seas in mine.  I know this.  To think I might is unrealistic.  I can hope, I suppose, but, I think a better use of my precious hope is to be able to continue to enjoy my life at the highest level of functioning I can and to prevent further limitations from creeping in for as long as I can.  And to stay positive.  My Father will hold my hand, so I'll have company.

Grateful today for the fact that I can enjoy the beautiful sunshine outside without feeling crippled by its light.
Have happy days!

PS:  I have rethought what I wrote earlier about storytellers and smooth sailing and realized that I'm generalizing A LOT of people I know and love who fight their way through life every day.  I know them, I know about their struggles they face every day, I know that Hollywood and stories are just there for our escapes, our entertainment.  But its easy to forget that.  None of us has it easy.  And if someone's life appears to be smooth sailing from the exterior, you can bet that there's a storm somewhere inside.  Each of us has a very specific cross.  Each of us bears it a bit differently.  But, only Hollywood promises smooth sailing.  Pure fiction.  ok.  Now I feel better having corrected myself.  :)