Today I go out

Today is my day out.  First the bus picks me up and takes me to the pool.  I'll stay there for a couple hours, then take a Lyft car over to my psych appointment.  Then the bus picks me up there and brings me home.  I look forward to pool day all week.  When I am in the pool, I cannot wait for the next day I can get to it.  However, the ride home from Plano, mid-day on a bus takes nearly 2 hours, and sometimes more, which needless to say, isn't good for me.  But, I still can't wait to get to that warm water.  I am free in the water.  There isn't any pressure on any part of my body.  I have no stress whatsoever.  It feels miraculous.  Or as close as I think miraculous can, given my hand of cards dealt.

We spread Evy's remains out in front of our home by one of the large trees.  I miss her so much.  Sometimes the ache begins to abate, and then I remember she isn't going to come around the corner and "I love you" ankle rub me, and then I ache again.  It will be a long sad road back from this loss.  I did beg God after her initial collapse that He take the decision from Tim and I and when it was time, just to please take her from us.  I prayed hard, selfishly, to not have to make the decision.  And He granted me that.  So, so grateful.  She was a super, super quiet kitty so, she was ever present, even though you didn't necessarily hear or see her.  She was just always here.  I think she had a happy life with us, and that gives me comfort but, the heartache remains.  The void is ginormous.  More than 12 years as my 24 hour companion.  For the first 7, there were no dogs, just me and her.

I finally gathered as much family health history as I possibly could from every parent, sibling, grandparent, aunt, uncle, and first cousin, niece and nephew I have to complete a form for UT Southwestern for them to determine whether I will be admitted to be seen in their Adult Genetics clinic for evaluation.  I called the lady's office number on the day I mailed the form to be sure I was sending it all to the right place and chatted with her a moment.  She asked what I wanted to be evaluated for and I told her.  The next question was whether anyone in my family had had an aneurysm.  When I said yes, she said OH, and then she was silent for several beats.  That is a scary silence, if you've never heard it.  Then she said she'd do her best to process my form quickly when she got it.  At that point, there seemed to no longer be a question of whether I'd be seen by them, but only when.  When I try and take a step back from my life and look at it, how understandable that I am sometimes just overcome with anxiety.  I might have a truly dangerous form of a disease, a chronic and incurable disease.  Meanwhile, I already have an illness that leaves me without physical and mental resources to cope  very successfully sometimes.  I find myself reaching for the newly prescribed Xanax more and more often.

And to make matters even more scary, I will have to find a new mental health professional after only 5 more visits.  I have to change insurance, I have to.  Mine won't take the new plan.  This is something millions of us go through.  But, my level of anxiety is so high right now that I feel panic in not knowing who will help me take care of myself.  Tim had to pick me up off the kitchen floor in a mess of sobs over the weekend.  Grief and fear are very real players in my game right now.  They are undeniable.  I'm having trouble.  Thank God Tim is stable enough to help me, at least he seems to be.

Thankful that it is a pool day.  Thankful for my friends who still insert themselves into my life, because I just lack the energy to reach out to them, even though I need them.  Thankful for my spouse who so far is not infected by my downward spiral.  Prayer for stability and courage.

Have happy, happy days today!

Gotta write

I maybe shouldn't write tonight because the heartbreak is so raw, so new.  We got her from a shelter in 2005 just a month or so after I first came down with disabling symptoms.  She has been my companion through all of them.  Through every single one.  She purred next to me when I was sure I'd die from pain.  She rubbed against me an "I love you" when I was devastatingly lonely and isolated.  And today, she died sort of in my arms as I sang her our song, You Are My Sunshine, while we were in a Lyft on the way to the vet.  She was still breathing when we got there, but they told me she was gone by the time the nurse brought her back to the doctors.  The worst, the absolute worst is this:  I fed her this morning and she didn't seem to be as strong as she was for the last few days, but, I had to get on the bus to go to Dallas for a neurology appointment.  At the doctor's office, I learn that, in fact, I have an appointment next Friday, not today.  And I was so f******g cheap that I wouldn't take a Lyft home, or call a friend, I just decided since I didn't feel so bad that I had my crochet and my lunch and a book, and I'd just wait the few hours.  I should've come home.  I just should've.  At least she wouldn't have been alone when she collapsed, which is how I found her.  God I hope she heard me singing.  She was my sunshine.  Sweet Evy.

Grateful that the Lord took the decision from me and Tim.  Truly grateful for that.  And for her presence in our lives.

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.  :)

Some fear, indeed

I have said before, in several places and many times that I don't have fear about my life.  Well last week, my body very clearly demonstrated that I'm a liar.  And I just saw a blurb on FB that sums it up, I think.

I'm afraid because I know I can't fight forever.

That's what having this life feels like.  I will have to fight forever.

On a brighter note, I am doing well with my switch in sleeping position. Successfully on my back without changing all night for a week now.  I have no idea how this is helping me, but I trust that it is. Just the amount of pain I'm in right now would suggest that NOTHING I'm doing is helping.  lol  So, its hard to discern what to continue to do and what to discard.

Migraines are under much better control.  I have added an ever so slight amount of caffeine to my daily fluid intake throughout the day, and it does make a difference.   I add 2 full glasses of ice water to one cup of brewed tea.  Sometimes, I have half a coke zero diluted with a glass of ice water and lemon juice.  Really trying to keep it at as low a level as I can.  I want to not have to take my precious Zomig pill.  I only get 9 for a month.  I'm only "allowed" to have 9 instances where I suspect what I feel will turn into a migraine.  So, trying to hoard pills is an obvious problem.

I finally found a great therapist!  For me, the amount of good a great therapist does for me may exceed all the 4 meds I'm on put together.  Except for my migraine abortive, of course.  We only had one visit but, she already knows so much about me from how I handled that panic attack that I just intuit she and I will work well together.  So glad I fired the other one when I did and that her name was passed on to me.   It's ironic that she does not accept any private insurance, but yet she does take Medicare.  It's also important for me that she used to be an ICU nurse in younger years.  She knows about the body.  She knows about medicine.  She knows about fibromyalgia.  She was so glad that I asked my doctor for Xanax and have it in my purse and that I now carry a paper bag in my purse too.  She even told me that if I ever need to take the Xanax, to put it under my tongue and let it melt.  That way is the fastest to get into my bloodstream and begins to work within a few minutes.  Neither my doc nor my pharmacist told me that.  It takes the whole team, and now my team feels like I've got a solid quarterback.  I will see her weekly for a while.  Of the many things she asked me, "are you happily married?" was the one that brought a huge grin to my face when I said yes, and she said, "you have no idea how seldom I hear that."  Blessed.  So blessed.

We are going to adopt another dog for our home.  A smaller one.  Found one on Petfinder and was approved for her, but at the adoption event in Dallas yesterday, she nipped at Oscar twice.  But, we did find another.  I've not let myself fall in love with her but, she is a doll-face and I will be disappointed if something happens and we don't get to have her.  She's a year old Cairn terrier mix.  Good with Oscar and with the foster mom's kitties.  She's probably under 20 lbs.  If she doesn't get to be with us, at least Tim is on board with me and how desperately I need extra company sometimes.  So, another sweetie will be in our future, maybe sweet Carrie, maybe someone else.

You've no idea how exciting that is for me.  I have few things in life that I really can legitimately look forward to.  This is one.

Also, my trip to FL next month is one.  I'm not a super involved aunt like I wanted to be to all of them when they were born, but I do the best I can.

I pray so hard for this country and the world at large.  Frankly, and I will not say political things here because this is my personal space, this year makes me nervous for us all.  Again, like the title says, some fear indeed.

Well, enough now.  It is a sort of dreary Sunday.  It stormed this morning a bit, and now is just cloudy, windy, damp out.  The bottoms of my feet feel like they've maybe walked a marathon or something similar.  A very long distance on a very hard surface.  So, wheelie is in play bright and early to save the day.  Maybe not the whole day, but at least to remove that particular discomfort from my basket.

Grateful today for my shelter, my access to fresh food and water.  Grateful for my medicine and my doctors.  Grateful for electricity and air conditioning.  These foundation blessings make it so I can feel comfortable enough and think clearly enough to recognize the mega-long list of the rest of my blessings.

Have happy days!

Today's Plan

Well, I am home today, when I want to be somewhere else.  It's disappointing, frustrating, hard to accept the reality of the situation, and saddening.  So, I've gotta find a way to be ok with it.  I have to.  I want to be at the warm, indoor saltwater pool swimming around.  Instead, I am going to walk the dog, then I'm going to make homemade toothpaste and homemade shampoo and conditioner.  Never made any of those before.   Found recipes to use from a site I like.  Every time I begin to feel sorry for myself, I look around at my lovely home, observe my sweet dog, and feel like an a_____e for not being grateful enough.  O and I are currently playing "throw the Kong again so the last treat bounces out of it 'cause I can't get the last one out".  Its a game we can play when I sit here on my laptop.  We use Temptations cat treats as the innards and the game is the MOST fun when there's only one left inside, apparently.  It starts out loaded with about 15 or so.

I am so looking forward to seeing a new psychologist tomorrow, especially since she was recommended to me by others whose lives are similar to mine.  I can really feel the deficit of mental health support since my move here a few months ago.  The first doc I tried was a bust.  In all things, all my life, I try not to set expectations too high so as not to be too disappointed when they're not met, but in this case, I need her to "get" me and I need it soon.  So, hopes are high.

Whoop, our Kong game is over.  :/

I'm retraining myself to sleep at night on my back without moving.  I've done it 4 nights in a row now, but, I've needed to take my valium to do it.  Hopefully, as it becomes more habitual for my body, and as I develop the muscle memory, I will wean down and then back off the valium for sleeping.  I have done that before, a couple times.  It feels incredibly unusual to wake up on my back staring at my ceiling.  I've never slept that way my whole life.  My new massage therapist was pointing out all the ways that my tense muscles were pulling my skeleton out of alignment, which only compounds pain.  One leg was a couple inches longer than the other, one hip was jutted forward an inch or so from it's partner.  One scapula sat at a normal angle, the other at about a 45 degree angle.  A general mess.  So, he suggested this change and I told him I'd try.  I feel good that I haven't broken down so far and flipped.  I am so used to resting on my belly that it almost doesn't feel restful to lie on my back.  It feels foreign.

Well, I guess I will get up, walk him,  and make my little recipes.  Enough of sitting here pondering life as I know it.  I am glad not to be out there in the city on the bus.  And I have hope that I'll be guided to the right mental health practitioner soon.  My Father knows what I need.  He provides.  Grateful for the quiet, peace of my home and my lovely companion animals.  I do have a very rich life.

Have happy days!