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.  :)

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!

Especially Harrowing Day

I am going to type this in as I spoke it into my voice recorder.  ~M

It's Friday morning at 2:23 and I'm awake because I did so much extra sleeping when I got home yesterday so I want to record the events of the day now that my migraine is finally gone and I can speak more easily.  So yesterday was Thursday which means swimming day.  The bus came for me at 8:15 am.  I felt ok.  I was out of my migraine medicine but I was not worried about that at all.  That was a mistake.  I rode the bus to the pool and I was the only rider so I was there by um, about 9:15 am.  So I got in the pool with the 9 o'clock class and I did about half their class with them and um, I swam quite a bit in between classes.  Um, I got out and I ate part of my muffin and drank a lot of water um, before my class started at 10:15, no 10:30.  So I was in the pool for a long time and I did have a migraine by the time my class started.  I was having to wear my sunglasses in the pool.  When my class finished at 11:15, I couldn't stay in the pool anymore and get any more exercise.  I had to get out and rest my head with my hat on.  So, I ate my sandwich wrap, drank more water, ate the rest of my muffin.  The ride was due to come at 12:15 so I knew that I just had to sit and wait in there for an hour.  So, I did that and I watched some people in the pool and I listened to a book and tried to keep my face in the dark.  Because my head was getting progressively much worse.  Um and my body was starting to really follow it and I was with my cane and not my wheelchair.  so at about 12:15 when I looked at the app on my phone again for the bus, it said it was coming at 12:45 now.  So I decided to go up the stairs and go into the offices to see if I could rest in there , sit in there while I wait for the extra half hour.  Well the extra half hour turned into an hour because the bus didn't come until 1:15 and I was curled up on the floor of the office on one of their yoga mats because I was debilitated from my head and the extra pain that was in my body.  Anique looked out for me for when the bus arrived so I wouldn't miss it and um she helped me to get on it.  Um, so I got on the bus 2 full hours late after I got out of the pool and then we rode around in Dallas for an hour in that bus with a full migraine and um the pain in my body escalating and escalating.  Um finally at about 2:15 or 2:20, um we dropped off another person, and then picked up another person, and my pain in my body just exploded all of a sudden like a bomb and I was just in agony everywhere.  Like my head was so bad that I couldn't really communicate or think of words to say and I'd begun pulling my hair.  I was out of water by this time. Um   I was sitting in the back of the bus which was a little mini van and began just sobbing, openly sobbing in the bus.  There was one other man on the bus with me who was mentally handicapped sitting in front of me, and then the driver in front of him.  The driver talking on the phone in a different language and I couldn't stop crying.  And I was wiggling around in the seat because my body hurt so bad and I was so uncomfortable.  I was so uncomfortable, it was like, I can't even describe it.  It was like things were inside me, crawling around  me trying to get out so I was like squirming all over the backseat and pulling my hair and sobbing.  And I was afraid.  I was in so much pain and I was in such a bad situation that I became afraid and I started to have a panic attack.  I started to breathe too shallowly and then I started to get where I couldn't take a full breath, I couldn't breathe deeply because I had done too much shallow breathing and I couldn't get my lungs to open again.  The bus driver was asking what was wrong, I just tried to say that I was in pain, he asked if we needed an ambulance or if I just needed to be home and I said home.  I was still sobbing, I couldn't stop sobbing, still pulling my hair, still squirming around.  We were far away from my house still.  He was trying to get me home as fast as he could, I know, because he knew I was in trouble and at 2:45 we pulled up to the front of our house.  I was still sobbing.  I told him that I couldn't walk, I couldn't get out, that he had to go press the bell.  And its just coincidence I think that Tim worked from home yesterday for the first time since he's had this job he was at home.  So he brought my wheelchair out to me and I sort of flung myself into it.  The bus driver carried my bags and my cane to the door.  Tim pushed me and got me in the door.  I told him I needed a paper bag, I was hyperventilating.  He said he didn't know where they were, I told him where they were.  I was pulling my hair, still sobbing.  He brought me 2 valiums and some water.  Got me into my room onto the futon, got the fan turned on, got me some valiums some water and paper bag, left me for a little while.  It was least a half hour of breathing into that bag before I could really breathe normally and feel um calm again.  My body was actually past the point of pain, it was entirely numb at this point.  I couldn't even feel any pain in my body anymore, which is maybe only about the second time that has happened since I have had fibromyalgia.  That the pain was so much that it was no longer registering, that it was just numbness everywhere.  My head was a hot mess of explosion, like I would say that it was at a 9, only because I never use the top number of the scale, so I would say this was a 9 or a 9.5 migraine.  I had no business being out in the sunshine, I had no business being out there without any water on a bus.   None.  But, that's where I found myself so.  So um, I laid for a while and breathed into the bag drank all the water I had and I got myself into my wheelchair, then I yelled for Tim to come and help me because I had to pee.  The wheelchair doesn't go into my bathroom.  So, I had to cross my arms around his neck and hug him and he had to lift me and take me onto the toilet.  We had to get my swimming suit off me together so that I could pee.  He brought me one of my cold frogg towels from the refrigerator and then we had to get me back up off the toilet onto the wheelchair back into this room.  He brought me another tall glass of iced water with a straw and um then just left me with my frogg towel and my water to try to pass out, which I did.  I woke up about maybe 5:30 um, needed more water, needed the bathroom again, went to the kitchen and made myself a peanut butter and jelly sandwich for some dinner.  Asked Tim to please go to WalMart  and pick up my migraine medicine and also my Amitryptaline.  We agreed that I wouldn't go to the pool again without at least one migraine pill available and that I would also not go there without my wheelchair again.  My head still was in very bad condition but the rest helped it so I could to form sentences and I was able to communicate.  It wasn't split open anymore, it was just wounded.  Um so I went back to my room and tried to rest more in the dark and the quiet.  He did go get my migraine medicine for me so that I'd have it for today's bus ride.  But, I knew that it was not gonna help yesterday's so I didn't bother taking one.  I did find my old hydrocodone which I haven't taken since about March I haven't taken it.  I took one and it wasn't very long before I could feel it working, passing me out.  So I brushed my teeth and um took my nighttime medicines and came back and laid down more to try to pass out again.  So now at 2 in the morning I can say my migraine is finally gone.  I do have a dull pain in my head that feels like a bruise was left from the migraine.  It feels like my head is actually bruised.  My body is in better shape, not good shape but better shape than it was in because I've rested so much.  2 am and I'm actually starving and quite thirsty.  Um.  So I didn't record this story tonight for my blog for any pity from anybody.  If anybody wants to feel any pity toward me, please don't, turn it into prayer for me.  Because pity will not help me in my life, but prayer will.  Those of you who have never found yourself in an incredibly vulneralbe and scary situation where you did not have a person who you could depend on with you and you were alone, you might not understand why the hyperventilation happened, why I got so scared.  I wasn't even aware of the fact that I was fearful, it was just happening from within me.  I knew that I was in trouble when I started to pull my own hair because that's a behavior I've never done before.  And so I knew from that behavior, it scared me, I knew that I was in a new and a very very bad situation.  And that's when the hyperventilation began.  I was able to keep that under control.  I was able to find deep breath while I was still on the bus for a little while.  I calmed myself down a couple of times but the sobbing just kept returning.  By the time we got to the sidewalk in front of the house going into the house my lungs were on fire burning, trying to get breath in them.  Which is quite frightening if you've never had that experience or lived through that.  Um, it feels quite serious, it feels quite frightening.  So even though people, doctors say that fibromyalgia is not a life-threatening thing, I really did think that I might die on the bus yesterday.  I really did think that there were probably not that many ways I was gonna survive that.  I think that's where the tears came from.  So, I'll be curious to see how strong and how courageous I'll be when the bus pulls up at the house this morning to take me to my doctor.  Whether or not I'll be afraid to get on it, whether or not, how I will feel.  Because as of right now, I have to tell you I'm not looking forward to it.  I look to it with dread, so, I will have to do a lot of praying and a lot of pep talk stuff to be able to get myself to my doctor this morning.  And I need to go, because I need a muscle relaxer because my back is in trouble.  I've got a massage scheduled on Saturday also, so I've gotta ride the bus two more days in a row, tomorrow and the following day.  And it was a bad experience today.  It was a bad experience.  They were 2 hours late, and then I rode around in the bus for an hour before I started to have panic.  It was at least another half an hour that I was sobbing and in panic mode so I'm not sure how the experience could have been worse than it was because I was in full on panic mode, sobbing openly, pulling my hair, on the bus.  So it will be interesting to see how I  can talk myself and pray myself into getting on the bus again today alone.  I do have migraine medicine I can take with me, I do anticipate that my head will feel like a bruise for quite some days now after this.  So, my gratitude for this entry will be that I was able to stay under control and not go into full hyperventilation while I was alone in the world.  I was able to still keep enough oxygen and breath that I could tell the driver what I needed, tell my husband what I needed.  I needed a paper bag.  I needed my cold towel.  I needed water, ice water.  I had to be able to tell them that because I couldn't get those things on my own.  So I have gratitude that I had enough left in me to communicate.  Goodnight.

Back/shoulder/neck

Muscle spasm.  That is all I have to say.  Please google it if you aren't aware of how this can make you feel.

Gratitude that its only in this one area of my body.  More widespread might kill me.

Recipes in My Life (not for eating)

I save us so much money by doing a few things that are truly easy, if not I'd likely not embrace them so well, and they are so good for us.  I eliminate chemicals that I don't want around by making stuff out of natural elements.  Thought I'd compile a list of what I use on a daily basis so y'all can see how easy it is to stop paying $13.00 for detergent and 4.00 for deodorant, etc.  I'm not hardcore at this DIY stuff-making.  I still buy shampoo and conditioner, but it's on the horizon to get changed next.  I still use toothpaste and mouthwash.  Also I still use brand toilet bowl cleaner and dishwasher gel (I did try a few DIY dishwasher soap recipes, and was not satisfied with the results so, for now it's still Cascade).  Most all the rest, I make.  And when you make the stuff, you can customize the stuff.  Lovely.  These specific recipes are the ones I use in my home and life all the time.  If I use hair spray, I use this.  It's more like scrunch spray than finishing spray.  I only wash myself with this body wash.  Only this deodorant, and I don't refrigerate mine.   I only do my dishes with this.  I only scrub my bathtub with this.  So, they work.  And I think they work well.  The one caveat I will add is that the laundry soap doesn't help things stay white.  So, if you are a white whites purist, you'll want to beware.  Whites in this house are dull.  They aren't a priority for me.  They are clean, that is all we need.  Enjoy.

PS: I did not author any of these.  They are all found online and many folks use them.  Again, not my creation.

Hair Spray

Ingredients

·         1 cup of hot water (not boiling)- Can also use strong Chamomile Tea as the base if you want to lighten hair or black tea as the base if you want to darken hair, but you will need to keep in the fridge.

·         2 tablespoons Epsom salts (or more for extra texture)

·         1/2 tsp Himalayan or Sea Salt (optional but adds stiffness)

·         1 teaspoon aloe vera gel

·         1/2 tsp conditioner (optional- don’t use if you have fine/oily hair)

·         Optional: a few drops of essential oils or a spritz of your favorite perfume for scent- Lavender and citrus are great options

·         Optional: 1 teaspoon lemon juice and 1 teaspoon vodka or alcohol- if you want to lighten hair (the lemon juice lightens and the alcohol preserves)

Hair Spray Instructions

1.   Get a spray bottle that holds at least 10 ounces. I used a glass bottle made from an old apple cider vinegar bottle and a regular spray top. I also tripled the recipe to accommodate the size of my bottle.

2.   Put the hot water (or tea) in the spray bottle and add the Epsom salts, sea salt (optional), aloe vera, conditioner, scent (optional) and lemon juice/vodka (if using).

3.   Put the cap on the bottle and shake for 1-2 minutes or until Epsom salts and sea salt are dissolved. Store in the fridge if using lemon juice or tea base, or at room temperature if you aren’t. Will last 3-4 months or longer.

Herbal Bedtime Tea

Ingredients
*Purchase organically-grown or wildcrafted herbs whenever possible. Parts are measured by volume not weight.

-3 parts chamomile flowers
-2 parts lemon balm
-1 part catnip
-1 part oatstraw
-1 part passionflower
-1/4 part hop flowers
-1/4 part valerian root

Method

1.    Measure the parts of each of the herbs listed and mix in a large bowl until well combined.

2.    Grab your tea accessories, tea infusers, and/or tea pots…and brew a cup! (Note: I get all of my loose leaf tea-making supplies online from Mountain Rose Herbs.)

3.    This herbal tea blend will keep stored in a cool, dark place for approximately 6 months. (Note: I like to store all of my teas in glass jars with tight-fitting lids.)

4.    This tea is mild enough to use nightly. Take a cup 30 minutes before bed.

Homemade Muscle Rub Recipe

The blends below start at a 5% dilution, which combined with the cayenne-infused oil should be sufficient for most situations. However, in some cases you may find that more is needed to relax and soothe. A 10-20% dilution is considered appropriate for very sore muscles if used only on an occasional basis. To increase the dilution ratio to 10%, simply double the number of drops. To increase it to 15%, triple the number of drops. To increase it to 20%, quadruple the number of drops.

INGREDIENTS

·         4 fluid ounces (1/2 cup) melted coconut oil – this will yields about 2 fluid ounces of infused oil (where to buy coconut oil)

·         4 fluid ounces (1/2 cup) shea butter (where to buy shea butter)

·         2 tablespoons grated beeswax, tightly packed (where to buy beeswax)

·         2 tablespoons cayenne pepper (where to buy cayenne)

·         100 drops peppermint essential oil or eucalyptus globulus – 50 drops of wintergreen essential oil can be used in place of peppermint or eucalyptus, but please read the cautions below before including it (where to buy peppermint essential oil, where to buy eucalyptus essential oil, where to buy wintergreen essential oil)

·         40 drops copaiba essential oil (where to buy copaiba essential oil)

·         40 drops juniper berry essential oil (where to buy juniper berry essential oil)

*Note About Wintergreen Essential Oil: This oil should be avoided by pregnant and breastfeeding mamas, children, anyone on anticoagulant medication, anyone who has recently undergone surgery or will soon undergo surgery, individuals with hemophilia or other bleeding disorders, and anyone who has a salicylate sensitivity (this often applies to individuals with ADD/ADHD). (Source: Essential Oil Safety)Individuals with the MTHFR mutation may also have a problem with wintergreen due to it’s high salicylate content. If this applies to you, replace the wintergreen with 50 more drops of peppermint or eucalyptus globulus essential oil.

EQUIPMENT

·         double boiler (or a pot that fits inside another pot)

INSTRUCTIONS

1.   Place coconut oil and cayenne in a double boiler and gently warm the oil. Be careful not to let it get hot because the smell of cayenne will fill the room and make you cough. (Not that I would know that from experience – ahem).

2.   Once the oil is slightly warm give it a stir and then turn off the stove. Allow it to sit for half an hour and then repeat the process.At this point you can move on to step 3, or you can warm it again and allow to infuse 1-2 more times for a stronger oil. Overall this process should take 1-2 hours, depending on how many times you reheat the oil to intensify the infusion.

3.   Using a cheesecloth or old t-shirt, strain the mixture mixture over a measuring cup. After straining out the spices, add enough coconut oil so that the final amount is 1/4 cup.

4.   Melt beeswax and shea butter in a double boiler and add to the coconut oil. Stir in essential oils and allow to cool completely.

5.   Store in an airtight jar – Amber or cobalt are best but a clear jar is fine if kept out of direct sunlight (which promotes oxidation).

Storage and Shelf Life

I recommend storing this rub in the fridge to preserve shelf-life, which should be around 6-12 months.

 Mind-Clearing Mist

Ingredients

4 ounces water
10 drops peppermint essential oil
20 drops sweet orange essential oil
4 drops patchouli essential oil 

Directions

1. In a spray-mist bottle, combine all ingredients. Shake vigorously.

2. To use, apply a light misting to face, neck and surrounding airspace.

Homemade Body Wash Recipe

Ingredients

·         ⅔ cup liquid castile soap (find it here)

·         ¼ cup raw honey (find it here)

·         2 teaspoons oil – jojoba, sweet almond, grapeseed, sesame, or olive (find it here)

·         1 teaspoon Vitamin E oil (find it here)

·         50 – 60 drops essential oils (find 100% pure essential oils here) – see suggestions below

Directions

Measure out all ingredients and combine in a bottle with a squirt top, shaking to mix. Shake gently before each use. To use, squirt onto a washcloth, bath pouf, or directly onto body.

Since this recipe doesn’t contain water, it has a long shelf life.

Fabric Softener

Ingredients

• 3 c White Vinegar
• 1/4 c Rubbing Alcohol (or vodka)
• 20 drops of Essential Oil (such as Tea Tree, Purification, or Thieves)- I recommend this brand

This is easy! Simply put the ingredients into a glass jar, shake it up and you're ready to go! Just add ½-¾ cup to your fabric softener dispenser in you washing machine the next time you do a load.
That's so easy right?

Homemade Laundry Detergent

1 bar, Dr. Bronner's Castille Soap -OR- 1 cup liquid Dr. Bronner's Castille Soap* (from Whole Foods)
1/2 cup washing soda (sold at Meijer's)
1/2 cup borax (sold at Target)
water
5 gallon bucket with lid (sold at Home Depot)

Using a food processor with a grater attachment, or an old-fashioned regular grater, grate the Castille bar soap, or simply use the liquid Castille.

Heat 6 cups of water until very hot, but not boiling. Pour the water into the 5 gallon bucket, and add the Castille soap. Stir until dissolved.

Add washing soda and borax, and stir until dissolved.

(for this next step, you really want to make sure that the bucket is in a place where you will be storing it, so you won't have to carry it. Once the bucket is full, it is heavy!)

Fill the bucket within a few inches of the top, and stir well. Let stand overnight.

In the morning, stir again. There will be a gelatinous topping, so you want to stir the detergent, until it is the consistency of egg-drop soup.

You are now ready to use the detergent. I used a ladle and a funnel, and re-used several plastic juice and cider containers, and poured the detergent into several smaller containers, and stored the rest of the detergent in the bucket.

TO USE: Simply add 1/2 cup of the laundry detergent, while the water is filling the basin, so it mixes with the water.

*Dr. Bronner's comes in all sorts of nice scents, I chose a citrus scent, which works great. However, since the scent comes from essential oils instead of chemicals, it is much more subtle than traditional detergent. If you want stronger scents, add essential oils. But honestly, I love the way clothes just smell, well, clean.

Easy DIY Dish Soap 

Author: Kristin Marr

Ingredients

·         2 TB borax (where to buy)

·         2 TB washing soda (where to buy)

·         1¼ cups water

·         ¾ cup Sal Suds (where to buy)

·         15-20 drops each: peppermint essential oil (where to buy) and tea tree essential oil (where to buy)

Optional:

·         ½ TB nourishing oil (jojoba, almond, olive oil, etc.)--If you'll be using this soap with bare hands.

Instructions

1.       In a saucepan, heat the the water just until it reaches a boiling point. Turn off the heat and add the washing soda and borax, stirring to dissolve. Let the mixture cool for 3-5 minutes, just until warm, but no longer hot.

2.      Add the Sal Suds and and essential oils to the water mixture. Vigorously whisk the ingredients together.

3.      Use a funnel to pour the dish soap into a soap dispenser (I found one at IKEA). The soap may separate after sitting for 24 hours. If this happens, vigorously shake the soap bottle until the ingredients are combined.

Deodorant

Ingredients

1/2 cup coconut oil
1/4 cup cornstarch (or arrowroot powder for sensitive skin)
1/4 cup baking soda
1/8 -1/4 teaspoon essential oil (We like lavender and lemongrass, but feel free to choose your favorite)

*Recipe slightly adapted from gnowfglins.com

Instructions

1. If the coconut oil is in a solid state, put some in a microwave-safe container and pop it in the microwave for 10-second intervals (until it melts fully).
2. Mix in essential oil.
3. Add cornstarch and baking soda and mix until smooth.
4. Transfer to a jar and apply with your hands or an empty deodorant tube for mess free application.

Note: It may be best to refrigerate your deodorant since coconut oil has a low melting point.

Disinfectant

makes 1 medium bottle
Safe for use on granite, great for killing germs anywhere.
3 tbsp Castile soap
30 drops essential oil
Enough water to fill bottle

Shower spray

 makes 1 bottle
Lightly mist walls and tub after you shower—no more evil soap scum!
1 cup water
1 cup vinegar*
2 tbsp Castile soap*
10 drops essential oil

Soft scrub 

makes 2 squeeze bottles (mix in individual bottles!)

Scrub into tubs, sinks, and toilets—let sit, then rinse.
1/2 cup baking soda per bottle (1 cup total)
1/2  cup Borax per bottle (1 cup total)
1/2 cup Castile soap per bottle (1 cup total)
15 drops essential oil per bottle (30 total)
Splash or two of water per bottle (get it to the consistency you want)

All-purpose cleaner 

makes 2 medium bottles
Use on all surfaces except maybe granite, wood furniture, and food areas like cutting boards.
2 cups hot water
2 tbsp Borax (dissolve)
1/4 cup vinegar*
1/2 cup Castile soap*
40 drops essential oil