Thimbleful of LEGIT Hope

It is an amazing thing to have hope when there previously wasn't much.  The metaphor for the hope I feel after this week's doctor visit is like I can see there is a thimbleful of hope in California.  Since I am in Texas, it is a distance off.  Will take much time, energy, help and logistics to be in the vicinity of the hopeful event itself, but, the possibility exists.  It shines up from CA like a rainbow exploding from a thimble.  I can see the exploded rainbow from here in Rowlett, TX.  I know that some of it is meant for me.  I know this now.

I had a magical doctor visit this week.  I saw a cardiac electrophysiologist.  Not going to go into the facts yet, since there really aren't any firm ones until after all the testing during the first week of January.  However, I did leave that office with 3 monitors hooked up to me.  At one point during the examination he said to me "Why has no one seen this in you before?  Why has no doctor recognized this?"  Understand me fully when I say that I wanted to weep with the joy of hearing those words.  That sentence relieved my depression and soothed my soul.  I finally found the doctor who knows whats wrong and gives a damn.  He spent time explaining.  He asked me what questions I had.  He informed me the testing plan and sent me home with monitors.  He gave me his tentative opinion of who he thinks he will also be referring me to for other specific things.  He is fully invested in and planning to care for me.  And my mood is joyful.  I'm in a lot of pain, and not sleeping great but, I'm joyful.  I decorated our Christmas tree early yesterday.  Of the last eleven Christmases, I've only decorated the tree for maybe half of them.  Partially because it is so much work.  Partially because there needs to be a certain joyful feeling to motivate me to do so.  I am overfull with that now.

I had a feeling when I opened that Christmas ornament on Thursday evening of the Snowman Doctor with the cardinal that the whole army of my angel loved ones would be pulling for me during that appointment.  And they were.  I am validated.  Something is very much wrong.  And that thing   might not be able to be fixed.  But, I'm not scared.  I'm thrilled.  I've found someone who understands my problem and cares.  Even if my quality of life can only be lifted marginally, I'm thrilled.  I get to understand WHY I function and feel this way.  Maybe not for months yet, maybe not until I visit some other specialists, but, this is legitimately the beginning of the real deal.  I'm not just "more disabled by my fibromyalgia than all other fibro folks I know", I actually have deep root causes and more than a few things are very wrong.    And I'm not worried.  Not scared.  I am actually excited because even really bad news is so much better than living sort of like "how come I can't walk but everyone else at the support group can?"   I am going to finally get the PROPER diagnosis.  I am going to finally see the PROPER doctors for the actual things that are wrong with me, instead of just seeing doctors to give me medicines to relieve symptoms.  I will still do that too, because from what I understand, much of what I face isn't curable, but maybe more manageable than I'm handling it now.  There's no question that I've got fibromyalgia, but it's secondary.  As are the migraines.  As is the depression.  I'm on the path to finally naming and caring for the PRIMARY problems.

I'm grateful today like never before.  I really, truly am.  That Snowman Doctor with the cardinal, I'm super grateful for that because it was the communication vessel that I'd be cared for.  And I am.

Bonafide cheering section

I want to first say thank you to my bonafide cheering section in the world.  I forget that you're there and then when you remind me of your presence, it feels like a gift.  I'm so grateful for you few.  

The Christmas tree is up and lit.  Nothing else decorates it yet but, progress has been made.  I did neither of those tasks, btw.  I knocked a couple of things off my To Do list today.  Maybe half of them.  That's solid achievement.  Finding my way back toward proper perspective to take a win anywhere I can get one.

Only slept a few hours last night.  Haven't suffered physically today as I'd have predicted as the result, except for the migraine, of course.    Here's this month's tally.  I have two pills left.  "They"  you know, BIG PHARMA and all their importance and rules, will let me have another 9 pills on Friday.  I think I will make it this month.  I think I actually will make it.  I have to go out tomorrow, but just to a doc appointment and home.  Cutting out the swimming.  Recognizing it as too much for me in spite of how much I LOVE it.  And on Friday, I have a new doc appointment which is predicted to last at least 3 hours, so, saving a pill for that bundle of loveliness.   Not gonna lie, nervous about that one.  Timothy will be with.   Tried twice to nap today, failed twice.  But, did get solid rest, which, for today at least, counts.

This year's tree is bittersweet because our kitty LOVED to lay under the Christmas tree.  Every year she'd snuggle down.  It's only our 2nd Christmas together without her.  I just searched for a pic of her under a tree, but couldn't find one, so, here's a lovely one. We don't generally photograph our Christmas trees.  In fact, I couldn't find any but, I didn't search all that hard, either.

Anyone who struggles with depression, I highly recommend Furiously Happy by Jenny Lawson.  I'm listening to it now for probably the third time.   Maybe the fourth.

Let's see, what other minutiae to report?  Got some nice Lupine Martingale collars for the dogs and the walking/tugging situation.  Today was our first time out with them, and all 3 of us returned home in the original 3 pieces in which we left.  Goes without saying that we walked back and forth in front of our home and two homes up and down in each direction, for about 20 minutes.  Again, accomplishment.  Baby steps, y'all.

It was pointed out to me by my sweet spouse that one of my passwords was ultra-depressing, and I didn't realize that.  So, yesterday, I went on a password changing spree.  Feels good to shed that negative.  No, I will never forget, but that doesn't mean I have to type it in.  Now the passwords are positive and factual.  And no, they aren't IMISSEVY2.  If they were, I'd use IMISSEVYAZILLION2.

I felt weary last week, getting through a family holiday as we do with utter absence of family with us.  And the fact that the day after was Monica's birthday, pulled at me.  A couple days, I stayed in bed a lot of the daylight hours.  As of now, Monday evening of the new week, in the twinkly lights, color twinklies, not white ones, I feel less weary.  I am not myself.  But, I am also not somebody I don't wanna be, if that makes sense.  This is one of those times in my life I am making a conscious effort to be thankful for because, it is in these times that I 1)am reminded of my cheering section, 2)pray more and stop and be still to listen for answers, 3)compare how good things normally are for me, 4)hopefully learn and grow.  It's a genuinely uncomfortable time but, I understand its arrival and necessity and I appreciate that I really am being cared for, genuinely cared for.

Got an early Christmas/Birthday present with my new Samsung Tablet.  I was gonna write which kind it is but, now its in the protective casing, and I can't remember how to figure it out.  My other tablet had become non-responsive.  This new one is lovely.

Oh, also selling a few Twiddle Muffs, which is also lovely.  Having a "sale" that for every one I sell before the end of the year, I will donate one to a local dementia unit.   I put down my crochet several weeks ago because it had become so painful.  Haven't picked it back up yet.  Emotional armor not strong enough for disappointment again so soon, not to make negative predictions, but you know, just in case it still hurt to hold the hooks.  Just in case, I'll be ready soon.  Baby steps.  Coloring instead now.  Nice but, not nearly as lovely as crochet for me.

Have pulled myself away from web searching about miscellaneous health issues.  This was/is good advice.  Spending very minimal time on social media, in general.  Trying to listen to God and hear His will for me.  And waiting for doctor appointments.  Who sings that song, "the waiiiiting is the hardest part"?  Truth.  Whatever is, is.  The end.

I'm gonna call the stable that's just about a half mile down the road from my neighborhood and ask them if I can come out one afternoon, and just hang.  I feel like if I could be in the company of a horse for an afternoon, all would be right with the world again.  OK, not all, that is really too much, but, a good bit would feel soothed in my soul. Better? More realistic.   A good, good bit of soothing.  
Thankful for them.  Have happy happy days.

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.  :)