June 30

Today, I suffered very little.  Today, I felt strangely close to what I vaguely remember normal feeling like.  Excluding the parts of the day that I limped around a bit after walking Oscar and the bit about having to take a nap after lunch, even though I didn't want to.  When I feel so symptomatic for such a prolonged period and then, the baby steps bring me here, into this foriegn land of "feeling ok", I actually believe in miracles.  Not that I don't believe in real miracles, you know.  I do.  But, this would be just a smallish Marie-sized miracle, not loaves and fishes.  I mean just a few weeks ago, I was in the depths of suffering.  And today, I enjoyed every bit of my day.  Granted, I did not do much, but, I ALSO DID NOT SUFFER.  How amazing is that?  It is comparable to a sunrise, truly.  To a pyramid or a mountain.  It is simply great.  Greater than my lil' mind has words to describe.  I swept my kitchen floor, dusted a few tables, took my bath and did 2 loads of laundry.  I made breakfast and lunch for myself and fed and watered my animals.  I did some dishes and unloaded the dishwasher.  (We had take-out for dinner so this evening, I rested on the couch with Tim.)  So, clearly no huge accomplishments were made here today.  But it feels absolutely joyous to me tonight.  To have had this one day, this break, in this s**t.  It feels like I am leading the dance now.  We are still only doing a slow waltz, but, I am an active dance partner.

Here is the rub.  These many baby steps and careful monitoring that have landed me here in this "feeling ok" area can be undone at any time.  And really by any stressor.  A stressor I bring on myself or one imposed upon me.  That might not be tomorrow, may not be next week.  In fact, I may have a month in this foriegn land.  But, at some point, I will be back in my "homeland".  My new normal.  Symptomatic.  Maybe not all the symptoms, in fact probably not all of them, but, some.  Severity will vary.  But it will happen.  This I know to be true.  And here is where the question of hope arises.  Can I not hope that I will just move permanently to the foriegn land and make a new homeland there?  Is that too unreasonable?  Everyone else I know lives there.  But, alas, I cannot.  Rather, I will not.  Will not subject myself to that.  Shattered hope is very much like your first heartbreak.  The scar is unforgettable and crystal clear even decades later.  I remember that I thought I would DIE from that first broken heart.  I had physical pain in my chest.  Shattered hope is like that.  I think, naively,  I have recovered all that I lost.  That I can now do all that I want to do.  That I can rejoin the world I so miss and the people in it.  And I may have recovered it.  But, in my soul I KNOW that it is not permanent.  So, after so much shattered hope, I now count on losing it all again.  My hope lies in living as full a life as I can during the "feeling ok" times.  I know I will have those.  Lots of them.  I don't know when, or how long they will last.  Maybe a year, maybe 6 hours.  This has taught me the value of a lot of life that I think I probably took for granted before 2005 (my illness onset year).

I feel actual pity for folks who do not believe in a power greater than themselves.  I don't think pity is a very useful feeling, but it is what I feel.  It can't be sympathy for they are not suffering any loss.  They don't know what they don't have.  They think that this earth and what lies on it are all that we get.  I am clearly not of that belief, but this is not about my beliefs right now.  Here is why I feel pity.  When, not if but when, an event happens in the life of this person who has no connection to greater power, let's call him Joe, he can then also only turn to earthly items and events to comfort him.  He will likely turn to chemicals, maybe medicines and maybe not, to try to control and comfort his unfamiliar situation.  He will rage at the unfairness of it and that he doesn't deserve it.  He will become bitter at folks in his life who are still "feeling ok" or seemingly unaffected by this event.  And, in that, there can be hope of no kind.  Hope, I think, is defined by what is bigger than we are, the idea that there is more available to us if we just tap the right barrel.  If Joe only knows that what is available are the items here on the earth, and none of them help him, then really, why continue on the journey.  It's s**t.  Just pain, day after day.  It is only the hope that keeps us going when crap hits the fan.  Nothing else, when you strip away all the fluff and frosting.  Just hope.  But, it is important to be clear about what we hope for, I think.  If Joe suddenly believed, would he hope for recovery, ease of symptoms, what?  That someone finds a cure?  What?  I sometimes think hope can be too wide-sweeping in light of a huge event like fibro.    For me, I have hope for specific smallish events.  (And I KNOW that I am a daughter of God and He will provide me what I need.)  I hope for enough energy and mental clarity tomorrow to accomplish my small to do list.  I hope to finish the 4 partial cane cozies I have begun by next week so I can photograph them and add them to Etsy, that will feel like an accomplishment to me.  Everyone needs to feel successful accomplishment sometimes.  I hope that my uncle settles in comfortably to his new home very SOON and that if I can help him at all, he lets me do so.  I hope that I manage these baby steps correctly so I do every single thing in my power to stave off going back to my new normal.  I hope my cat lives through the year.

It's past bedtime now.  My eyes burn from tiredness.  Thank you all for sharing in my thoughts.  I see my world more clearly as I explain it to you, and therefore I observe my behavior in it more accurately.

Have happy happy evenings and sleep peacefully.

Who loves fermenting??

So, I am a newbie at fermented foods.  I am determined to keep my gut functioning correctly and well without taking handfuls of pills to do so.  I cultured these veggies this week:
And I just made this milk kefir:

milk kefir 2nd ferment

carrots, sauerkraut (2 kinds), cucumbers, red peppers, beets

Ok, so the first ferment of the milk kefir was beautiful and did not separate the way the second one did in the above pic.  But, I just made cheese out of the second one and am making watermelon soda out of the whey (the bottom liquid).  The first one was my morning smoothie.  

Sometimes, I have been guilty of the attitude that I am stagnant.  That is understandable when symptoms are bad.  Also, since I can't drive myself anywhere, it is easy to feel like I am not living as much as others, not learning, not growing.  But, this proves otherwise does it not?  I have just learned and taught myself to preserve food with ALL the possible probiotics in them.  And, by the way, beets are wonderful.  They are my favorites of all the ones I cultured.  Right now, I am making watermelon rind pickles.  They will be ready in 2 more days.  I had no idea that the rind was the most nutritious part of the watermelon.  Imagine we used to throw away such valuable stuff.  UUUGGHHH!  So.  I am not stagnant.  I do learn and I do grow.  And I do enjoy my life tremendously.  I do this in the face of a dance partner I did not choose.  

Thanking God today for this very needed and treasured calm of the storm and hoping that it lasts long enough for me to build up whats necessary to survive the next storm successfully.  

Have happy, happy days!

Encouraging validity

So, here is what I learned this week.  I'm making progress.  Honest to goodness progress.

In a conversation with my Dad, I mentioned that I was doing a bit better and I knew it was because I'm staying in and just taking really little baby steps in my activity level.  I said I wasn't sure if it was fear or not because I didn't want to slide backwards.  I needed a break from my storm of symptoms and flare-up SOOOO badly.  My body, my mind, my spirit, needed for it to subside, even for a bit, desperately, and I have been very careful not to do too much.

My fantastic Dr. L and I discussed this.  I very much don't want to make any decisions out of fear.  I don't carry fear around with me now and I don't want to pick it up again.  Also, fear comes with a physical feeling, shortness of breath, rapid heart rate, sweating, etc.  Imagine truly spotting a mountain lion when out for a hike.  Those feelings are PRESENT.  You don't decide for them to be there.  They are just there to save your life, that's all.  So, in light of that, as I decide not to go out these days in the heat, it is not out of fear.  I am making the choice that it is not worth the risk of sliding backwards for me.  I know what usually happens to my body 95% of the time when I put myself in an unpleasant climate or take on more than feels completely comfortable and I choose not to go through it.  On the 5% chance that I am wrong and that I could do the activity and not suffer, I'm simply not willing to, choosing not to, take that chance.  Things were just too bad this year for too long and I want to protect this calm in the storm however I can.  And the very fact that I include fear as one of the options in the multiple choice of "why am I really not doing this activity?" instantly concludes that it cannot be fear.  In fear, I do not have creative problem-solving energy.  The only energy I have is to save myself from the lion.  But the fact that I can decide, means it cannot be real fear.  It can be very cautious prevention but, that is MY CHOICE.  I am not afraid.  My Savior tells me to BE NOT AFRAID, and I am not.  And it feels wonderful.  I will be as careful as I want for as long as I want and if that means I miss the entire summer of 2014, well then that's fine by me.  I want to spend as much time with my indoor kitty as possible now anyway.  She is very much not well.

Etsy - taking away the ugly

etsy.com/shop/Canecozies

Yay for colorful canes!!!

Would y'all go there and click follow, that way more folks might see me and my cozies.

Happy happy days!

Tea Tree Oil fights the night bugs

I have officially determined that when I forget to put tea tree oil in my bathwater, those are the nights I am crazy with crawly bug feelings.  When I remember, I am less bothered, if at all.  I use somewhere between 8-10 drops of essential tea tree oil.

Essential oils are worth learning about.  They have such powers.  We actually can do without all the laboratory chemicals that clean our environments and just use natural things.  We can wash our skin with them.  We can put one drop on a pillow to enhance relaxation and sleep.  I am just on the very base of the mountain of information about them but, I have several scents that I use regularly.  Sweet orange, lavender, peppermint, rosemary, and lemon.   I used Crunchy Betty to learn quite a bit and I use one of her oils from Etsy to wash my face, as does my sweet spouse.

I can't wait to try this mental clarity mist.  I bought patchouli just for this purpose.  But, I don't have a little spray bottle appropriate for it yet.  I keep forgetting.  Imagine, forgetting.  That's an ironic cycle.  Need the bottle for the mental clarity mist, mentally unclear so bottle is forgotten, and so it goes.

Feeling much more mobile and a lesser amount of fatigue these few days.  Super rain all week and forecast for today and the next few.  Trying just to keep myself from being exposed to that level of humidity.  It sucks the life right out of me.

I think I will scrub one bathtub today.  Yippee!!!!  (THIS IS NOT SARCASM.  This is gratitude.  The ability to take care of my own home.  Thank You God.)

Have happy happy days!

One giant leap for Marie-kind

Things have improved.  I am no longer plagued by such unrelenting pain in the last couple of days.  Fatigue has replaced it, but I will take fatigue every time over pain.  And, also no headaches, which is a blessing.  I continue to stay basically cocooned in this house to accomplish these steps forward which is a fairly high price to pay.  Feels very, very much like others are out there living, and I am here, stagnant.

I can't fall asleep yet, and it frustrates me.  I have read.  I have crocheted.  I have prayed.  Last night I resorted to a Valium to just knock me out and I don't want to do that again.  Lately at bedtime, my skin itches so bad, and of course if I reflexively scratch it, boy o boy, I am reminded that I can't just scratch an itch like a normal person.  I have to scratch the itch like I'm a week old newborn.  Otherwise, I just end up hurting myself, and the itching multiplies.  So, I sit here, another attempt at tiring myself enough to sleep.   The hundred or so bugs crawling all over me want attention but I deny them, for now.

I am going to culture food tomorrow for the first time.  I'm very excited.  The starters I ordered should come in tomorrow's mail.  Today I prepared lots of veggies.  Red peppers, beets, cabbages, both colors, celery, and carrots.  Love my food processor.  I have been reading that I can get enough probiotics in these fermented vegetables so that my gut will be balanced naturally and I can quit taking supplements.  If only.  After I seal the jars of food with the brine, they sit in a warmish place for 3 days, then should be ready to eat.  Then transfer to the refrigerator for up to a year.  Also, tomorrow, I'm going to pickle watermelon rinds.  Proof that I feel better than a few weeks ago.  So ambitious, huh?

Also going to make kefir for the first time.  Will report back as to success.

I feel a very distinct feeling of unease right now.  And, that would probably be natural considering the hundred crawly bugs, but no, it isn't them.  My mind, my spirit isn't at rest.  I'm not sure why.  It's sort of as if I sense that something is on the way to my life and I'm readying myself.  On alert, that's what it is, alert.  Interesting how I am using both the word alert and the word fatigue to describe myself today.  Oh, the possibilities of the universe.....

This week I have two doctor appointments to go to so, I will not be enjoying my safe cocoon as much.  It is time-consuming and energy-draining to go to an appointment.  I'm grateful that I have good doctors I trust and that we have good medical insurance, to be sure.  But, the expenditure on my part is high, especially when there is more than one appointment in a single week.  Not looking forward to it.  Maybe that's the unease.  Light-bulb. On.

Update on bugs:  they're winning.  I am miserable.  Of course, these bugs are invisible and you can't smash them or flick them off.  In my head, justifying taking med so I can get the sleep I so desperately need.  I won't be able to do it with this constant itching otherwise.  And it's midnight.  So many hours past my bedtime.

Have happy, happy, restful nights.
~M

Inspirational favorites. Just LOVE these two.

The Serenity Prayer

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace; Taking, as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life and supremely happy with Him Forever in the next. Amen. --Reinhold Niebuhr

Desiderata

Go placidly amid the noise and haste, and remember what peace there may be in silence.

As far as possible, without surrender, be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant, they too have their story. Avoid loud and aggressive persons, they are vexations to the spirit.

If you compare yourself with others, you may become vain and bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism. Be yourself. Especially, do not feign affection. Neither be cynical about love, for in the face of all aridity and disenchantment it is perennial as the grass.

Take kindly to the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul.

With all its sham, drudgery and broken dreams, it is still a beautiful world.

Be cheerful. Strive to be happy.

Max Ehrmann c.1920

My favorite lines of each are highlighted.  Which lines hit you in the heart?  

Have happy, happy days.

Marie

PS:  Evy is on my lap now, which doesn't happen much anymore so I feel compelled to keep writing.  She is firmly diagnosed with Stage 3 kidney disease (out of 4 stages) and the struggle is getting her to eat the special food.  I also have to give her a pill twice a day.  If we can't keep her appetite up, then we will have to go to subcutaneous fluids. Just an update on her.  There is no fixing it, just treating it as it gets slowly worse.  She is such a love and there will be a void the size of a battleship in this home when we lose her.  

Copy & Paste Bullet Points

Earlier this year, I sent the following to a loved one who was struggling.  I think it helped her.  I have zero energy/spoons today.  I feel extremely disoriented like I just woke up from having slept for a year and I have no idea what's going on.  I am getting dizzy spells along with growing pain.  So, I am not going to spend any further time out of bed.  This is copied and pasted from that email:

1.  There is no rule that says you must be ok all the time.  What you must be is true to yourself and caretaker for yourself.  The End.

2.  Every single feeling you have, love, rage, jealousy, anger, joy, all of them - are normal.  They are in us and part of us and we can learn about ourselves from each one.  None are abnormal or disposable or bad.  

  I call mine "The Mini-Marie Army".  I literally picture myself surrounded by a few dozen tiny clones of me, like 2 ft tall.  Each Mini holds a sign.  When her sign, her feeling comes up, she gets to use her voice.  Every single mini me is as important as every other.  No feeling or emotion should be squelched or denied or tell myself I shouldn't feel that way.  That dishonors my little army and the person God made me to be.  That feeling is real, valid, and she deserves her voice.  And, after I let her speak, the feeling flows away like water in a stream.  And in this image, this visual fantasy I draw support from, I also am never, ever alone.  I have all these dozens of versions of myself to give me strength.

Also, if I try only to let the OK mini-Marie speak (from #1) and none of the others, think of how much goes unsaid, unlearned, stopped up.  

3.  At the edge of the unknown, we have two choices.  Fear or curiosity.  Usually, we choose fear because its easy and we've chosen it for so long its habitual and we are comfortable in it.  But, if I imagine I am really at the edge, and I don't know what is in the next step, I wonder if there is gravity, I wonder if I could float or fly, I wonder how I will solve obstacles and cope with limitations.  Curiosity implies hope and life-giving energy.  Problem-solving.  Creativity.  ON the other hand if I choose to just predict my future, in spite of the next step being entirely UNKNOWN, and either back away or fall, expecting to do so (since I'm now some kind of psychic and I know whats gonna happen.).  

4.  It is super easy to go about our business and not ask for help.  Just the fact that its hard to do and people avoid it and it makes even the toughest of us uncomfortable PROVES that it takes incredible courage to do it.  You have within you the courage you need to do it.  Just let that little Mini-you speak.  

5.  I wonder what I look like in Christ's eyes.  He, above all, understands exactly what I suffer, exactly how I feel.  And I wonder if I am honoring Him by respecting myself and my needs.  Sure, life feels crappy some days.  Yes, it would be easier to wallow in self-pity.  But, he made me amazing.  I know that and it is up to me to be as close to that as I can even with my limits.  He made each person special.  Just some decide they want to take on the role of victim or helpless or whatever.  I know He can smile when He sees me because I continue to try, and when I need to, I sit down and grieve (Jesus wept), and then I do next what ever respects my body.  

Top 10 actions I have taken to improve quality of life this year

1.  Let go fully of any thinking other than just giving my entire life and being to Christ.

2.  Tried vegetarian diet for about 5 months.  Discovered several foods that I am keeping in my diet even though I have gone back to being omnivore.  Quinoa, tofu, hummus, Greek yogurt, a huge variety of salads, pizzas, pastas.  There is some truly great good-for-you food out there.

3.  Bought a Magic Blanket.  I seriously don't know how I slept through nights without one.

4.  Began supplements from Gut Sense.  Finally feeling some relief in that realm.

5.  Truly learned not to push myself on "good" days.  Pushing = overdoing, for me ALWAYS.

6.  Tell every person I come in contact with to "have a good day".

7.  Bought a pendant of Jesus and an angel in the Garden of Gethsemane.  Keeps in my mind the aloneness he felt then, similar probably to the aloneness I sometimes feel.  I can not tolerate a chain, so I replaced it with a leather cord and wear it whenever I'm not in bed.

8.  Sleep with a heating pad on my feet.

9.  Forgive myself EVERYTHING.

10.  Ask Christ to just "be" with me.  Daily.  Sometimes hourly.  Somehow, I keep surviving.

Nightmare. If you love me, beware. If you don't, this is quite interesting.

So, I have decided to share this repeated nightmare I have here just in case it might resolve it in my head and it might change or stop.  I have it frequently.  When I told my fantastic psychologist about it, and she explained the likely meaning to me, we were both emotional.  I cried.  And I have cried over it since.  Whenever I wake up from it, I am careful to lie there for a few minutes remembering it and committing important parts in my mind.  Then I go straight to the laptop and just type nonstop until it’s all out.  So I have several pages of it and only a bit of variation, like maybe the location.  The gist is the same.  As is the ending.

The person in the dream who is against me is always a member of my close family of origin (meaning my folks and siblings).  It is always that same member.  I treasure this person, as I do all five, and would not inflict hurt feelings for anything.  So, I am going to be gender non-specific and call the person Jamie, as that could be male or female.    After you read, I think you will agree that none of us would ever want to be in this Jamie’s position in a loved one’s dream.

Here goes:  I’m going to tell the school version but, there is a party version, a camping version, a supermarket version.

In my dream, Jamie and I are a couple, as well as siblings, which is weird, I know. She/he is unchanged in that she’s normal in almost every way except in how it applies to me.  (I’m just going to use she for ease of writing.)  So in private, she becomes diabolical.  I try to figure out a way to escape from her but, I can’t.  She says she’s going to kill me, it’s just a matter of when.  She will not let me out of her sight.  She is everywhere I go, magically.   She insinuates herself in everything I do.  Finally, I get to tell a couple of people what she has said about killing me and they won’t help.  I don’t know whether they don’t believe me or they don’t want to get involved or what.  Finally an old teacher of mine helps me (we are in a school and not one I ever went to).    At that point, the teacher and every other person in the class, all people I have been friends with in my life, try to hide me from Jamie.  She storms the school looking for me with a gun.  Everyone is terrified.  They think she doesn’t care about hurting them so, they try to protect me.  She shoots them to get to me.  They sneak me out of the classroom and into a bathroom and then they form a wall of protection for me again.  Jamie finds us.  She doesn’t even want me back or to have control over me anymore.  She just wants to kill me.  She has gone crazy with hating me.  I am so confused.  I don’t understand how this can be the case.  I am so bewildered as I just try to survive.  One old boyfriend in the class tells me he will do anything to protect me and I realize I should never have left him to be with Jamie.  He tries to figure out a way to save me but, he can’t. 

Jamie is crazy with wanting me dead.  Jamie always tells me this well before the immediate danger of it, too.  She seems normal to others, just crazy to me.  People don’t believe me when I ask for help.  I am afraid every second of every day.  I even ask strangers for help.  I tell every person I can what danger I’m in and no one helps.  When I finally find someone who will help hide me, because that’s the only way to protect me, (Jamie can’t be fought or killed), the hider is always in such danger.  Every person I know is in danger as she searches everywhere for me.  Every friend I’ve ever had is at risk.  She always finds me.  She always delights in getting ready to kill me. 

(Jamie seems to be able to smell me out.  Once I hid in a department store in a rack of clothes and she walked straight to me as if somehow she knew right where I was.)  Sometimes I needed to run and couldn’t because of my pain.  I am always confused and fearful.

I dream all the way through being killed by Jamie most dreams.  It is usually up close and personal with a knife (a KitchenAid knife that’s in my kitchen right now!), a really big chopping knife.  I do not scream.  I am quiet.  She just quietly inserts it into my abdomen and I die.  There is no fight, no struggle.

NOW – here is the really sad part – Jamie represents my illness, the literal genetic component of my illness.  I guess I could have given the pretend name Gene, lol.  So, if you read again and substitute the word illness/genetics for the word Jamie, it really does explain how deeply I am affected subconsciously by my fibro. 


To my family of origin:  It is not important at all which of you is Jamie.  It is not about any of you as people.  Jamie just represents my very close genetic bond to you.  It is my illness chasing me, that’s all.  I thought long and hard before publishing this because I would not do it if I thought you would take it on as your responsibility and feel hurt by it.  Please don't do that.

I sincerely hope that in the telling, maybe I can change the dream.  I have tried to change it many times but, can't seem to get out of the cycle.  

Don't think I don't have super great dreams, either.  I have another that is frequent as well and that one has me smiling in my sleep (so says Tim) and I wake up smiling.  Now, darlings, that is a dream.  I am gonna keep that one for myself for now.   There is no better way to begin a day than waking up smiling.  

Have happy, happy days!

Like Christmas morning in 1977

So, in '77 I was 9 yrs old (I think, I'm not super strong with math anymore.  Never was, really).  I don't know what I got for Christmas that year but, my joy this morning feels pretty comparable to what I estimate it was on that day.  Ginormous.

I just took a medium-sized walk with Oscar and came home with a bit of energy leftover and also, DID NOT REGRET HAVING DONE IT!  That is a giant step forward no matter how you look at it.  From every angle, a blessing, a gift.  (My walks come in sizes like french fries, small, medium, large.)  It is super humid already this morning and probably low 90's.  

Also, my super sweet husband noticed that I left my cane at home and was worried that I maybe needed help since I didn't tell him I was going to be attempting a medium walk and he expected me home in small walk time.  He was pulling out of the driveway to find me while we were just passing in front of the neighbors house on the way home.  (I have 2 canes and 2 wheelchairs.  A wheelchair lives in the back of the car always, or ideally, always.  The other is for inside the house.  Or if I want to walk O from it and husband has inconveniently driven car to work.  I have a single cane, standard, regular that I use to go on walks ONLY.  This cane is no good to me if I may need to stand still at all.  The other, my regular, everyday one, I call Pokey, is quad-footed.  I had left quad Pokey home and Tim had forgotten about single Pokey since he doesn't see me use it very often. So he thought I was actually out in the world with NO cane. Don't I wish.)

About an hour later........had enough energy to unload and reload the dishwasher and have a bath.

Am now going to make zucchini salad for my lunch and then, fingers crossed, actually make a batch of granola bars before my nap.  I know, I know.  Lofty goals for me this day.  I will go slow.  Listen to my body talk and if it says, no Ma'am, no granola bars today, I will obey.  

So fun to type this and be smiling.  So fun.  Monumentally fun.  

Have happy, happy days!

Pretty things I made out of string and various yarn bombs

My friend Sharon is credited with teaching me how to crochet one Sunday afternoon last year.   I have unfortunately become kind of a maniac.  It is such a soothing, rhythmic action.  And the yarns are so soft and pillowy.  I just love it. It calms me.  My hands do get stiff if I'm working on a tight row (the amigurimi, especially) but I use an ergonomic thingy for the hook and that helps some.  Mostly, I just have to put it down every 10 min. or so. Now, I don't strive for perfect pieces.  I am not that gal.  I strive for pretty good.  Happy there.  Pics below of some stuff I've done.  The yarn bombs are super fun.  Right now there is only one up, the telephone pole one, oh, and also my cane is always bombed.  I have made a few other cane bombs so, will put those on my cane and photograph too, at some point.  I made those extras to give away so, if you know someone who'd like one and it would make them feel better about using their cane, email me.

Awwww shucks, folks.....

It means more to me than I know how to phrase that I have gotten such lovely emails about this blog.  It is quite personal, clearly.  The last think I'd want is to seem like I was reaching for pity or sympathy.  And I was concerned it may come across in that light.  I am so relieved to know that it is enjoyable and moving.  I want to keep on writing.  I am going to count on you, my core few, to spread the word to others who may like/need it.  That is more work than I have energy for.  Some spoons have got to be saved for stuff like laundry and dishwasher loading.  I did make a Face Book page for it but, I am going to be careful not to spend too much time on there.  I discovered when I was on it before, I don't really enjoy it much of the time but I came to feel an obligation toward it.  That won't happen again.  I really just created the Coping Marie Style page there to help promote this blog to other fibro folks.

Today's victory:  Evy peed in all 4 litter boxes several times but, never on anything else in the last 36 hours.   Woot woot!  We will find out tomorrow what her blood tests show about how much the subq fluids lowered her numbers this week.  Fingers crossed.  She's our sweet, sweet girl.  She has been here with me almost since the beginning of this chapter of my life.  I got sick in March 05 and was crazy lonely at home until we got her in Aug 05.  She's been by my side for all the tears and giggles.

Thanks again for all your kind words to me.  It is super encouraging and very much appreciated.

Have happy, happy days!!

When to be thankful

He tells us to:

Be thankful in all circumstances (for this is God's will for you who belong to Christ Jesus).  1 Thes 5:18

Now, think about that for just a second.  In every situation I find myself, I am called to have gratitude for it.  When I lose the ability to clearly speak on the phone to (everyone is at risk when they call me) whoever and it just happens mid-sentence, I am asked for gratitude.  When I have to sit down on the sidewalk downtown because there is just no bench anywhere near and I just cannot stand any longer, I am asked for gratitude.  When I receive distressing news about a friend or family member and I fully deeply understand there is nothing I can do to help except pray, I am asked for gratitude.  When I see an older man walking into the medical office lobby who has trouble opening the door and I want to open it for him but I remember that in fact, I could not open it for myself either, I am asked for gratitude.  Complicated.  Difficult.

I do know this.  Grateful hearts are loving.  They take nothing for granted.  Not life, breath, love, not anything.  On my heart's list of goals:  Gratitude.  In all circumstances.

Today's example:  Evy, the queen of cats, has kidney disease now.  She does not feel well at all.  Consequently she has already peed on both of the dog beds.  Today, she also peed on his toys.  I am thankful for this because it is her language to me that she still feels really yucky.  Three days of subcutaneous fluid doesn't have her "back on her feet" yet.  This condition was just diagnosed about 5 days ago so, treatments are in early stages.

So, I need to pick out the pieces of my situations and find the jewels that I didn't have before.  With a pure heart, thanking God that the sidewalk I have to sit down on is not wet from rain or snow, and that it is in a part of town I don't feel directly threatened and that I haven't accidentally sat in dog poop.  :)

Have happy, happy days.

Longing to touch souls.....

Ministering to Others 

Feeding the poor and clothing the hungry are important ministries. But so is the ability to write a moving eulogy or devotion, compose a beautiful hymn, or paint a glorious sunset. The ways in which God gifts us with the talent to touch souls are as infinitesimal as he is. 

— from Sisterhood of Saints

What a comforting notion.  My talents are not very high in any one category but, I have at least some in a few categories.  Well, in the previous healthy-Marie world I did.  Now, I hang on to just a smallish amount of those few but, above, I am assured that even the expression of those is a way to minister to others.  Maybe I will get better at this writing thing and it will actually make a difference to somebody someday.  That is my hope.

June 2014 - another random late night

I have taken a series of baby steps forward followed by giant steps backwards for many months now.  Today, I can say, I did have markedly less pain.  It feels like one extra baby step got snuck in.  But to do this, I am literally not leaving my house more than twice a week.  Sometimes, only once a week.  I do not expose myself to many other people, or even to the weather.  

There is a huge sense of loss in the fact that it is now June and I realize that last year by this time, Tim and I geocached every weekend, dozens of caches at a time.  Now, I am nowhere near being able to tolerate or enjoy that.  I rode the MITS bus to a farmers-market at least every other week.  That would be just misery this year.

I sort of feel stunned by the hugeness of the grief of it.  Everything I am missing.  everything that I choose not to expose myself to because of negative consequences.  And for me, memories of negative consequences seem to stick around longer too.  Maybe I have fewer opportunities for delightful positive ones to fill in the memory picture so the negative ones seem bigger than they are. 

I continue to really struggle with anger and sadness.  How I hate not being able to do things I want to do.  Like walk the dog, make a new recipe, scrub my kitchen floor.  Not outrageous things.  Not roller coasters.  Just regular, run of the mill life.  Out of my grasp.  

I am more symptomatic and for longer now than I have been for a few years.  I did have a sort of remission of symptoms in 2008 when I finished college and got married and went to grad school.  Maybe this year is the opposite balance of that year.  I am sitting the year out at home instead of doing really anything.  

I do not think I will grow old.  I think my body, as sensitive as it is, will be done long before then.  I don't think it will be able to handle what I have and the frailties of old age as well.  It is actually sort of relieving to realize that. I am desperate for relief.  I never thought I'd actually reflect on that topic in that way but, you start to wonder just how much pain a human being can tolerate day after day before the brain just says, OK, we're done now.  Lots of people get tortured very severely and survive. But, I don't have any hope that the torture will end.  Just that it might ease up for a bit.  I will just have to hold on to that bit of hope.  

Here's hoping for another baby step forward tomorrow.

May 2014... On being me late one night

I think we are all made of such widely varying characteristic s that it really can take many many years of practice and experiences to be who we were created to be.  There is an ideal balance.  It is elusive though.  And sometimes can only be realized during or after hardship.  This is ironic because in our civilized society we try as hard as we can to stave off hardships, despite the fact that they are growth opportunities. 

My anniversary was last month.  No one else knows the date nor would I have anyone else remember it with me.   I still always recognize march 13 almost like the anniversary of the death of a very close loved one.  I have been plugging away for 9 years now.

My illness affects me more severely than any other person I've ever met with the same affliction.  I seem to be made of two minds, or segments.  Deep inside physically , I'm like a porcelain doll, delicate, fragile, needing specific care and gentle handling.  Psychologically, I'm like G. I. Joe barbie.  Strong, tough, ready.   But eventually my physical limitations naturally reflect in my mind and soul and I end up having to re-examine what it is to be me.  I have to embrace the delicate and fragile parts, despite the fact that I don't want to.

Like everybody else, I cannot know what purpose my specific life serves in His grand plan but, I want to play my part as fully and lovingly and mindfully as possible.  Many times I am unable to be who I want to be.  I am unable to speak the way I want to speak or to physically do things I want, even need, to do.  The greatest faith is to know that these times too serve a purpose for Him and He means me to be on this path.

One of the greatest frustrations of my severe fibromyalgia is that other people in my world don't have any idea what life is like for me.  What I endure is uniquely my own.  If someone breaks a bone, has a cast or surgery, chances are that they know someone or at least of someone who knows exactly what that feels like.   When people, have flu, or strep, others can relate exactly since they maybe had it last year or in the last few.  But, the only people I know who share my illness, I met purposefully after the onset of my disease.  Before it, I never heard the word before.

And so, I am very, very alone in my struggle.  Maybe struggle is the wrong word.  Maybe fight is a better word but, to look at me day to day, I fear you would not think I'm much of a fighter.  Fighting implies strength, enthusiasm, endurance, courage.  I face most days with courage, but also with physical weakness, severe fatigue, confusion and foggy headed.  Dr L helps me bear out this aloneness by reminding me that Christ was utterly alone in the garden of Gethsemane.   Of His 3 friends there, none could stay awake and pray with him or comfort him even though he was clearly distressed and in need of company.  He was abandoned by them to fight His fight alone.  And He prayed that the cup be taken from Him.  I have prayed for that too.  I don't want THIS life.  He also prayed that The Fathers will be done.  And, in His footsteps, I have prayed that also.  Living in such isolation with more active people all around me is sometimes so bittersweet.   I am genuinely happy to see love and delight in the world.  Yet, I can participate in so little of life's joys without very high physical costs that it is hard not to feel anger.  So, I now allow myself to feel it more than I used to.  It would be so much easier if I could blame a specific source, but there is none.  So, sometimes I pretend there is one (the one varies depending on the day or whatever) in the privacy of my home and beat pillows, cuss like a sailor, and slap counter tops with oven-mitts.

I am glad for the fact that I usually over prepare for my needs instead of under preparing.  Yesterday, for the first time in some years, I found myself without my wheelchair and unable to walk.  The doctor performed an unplanned biopsy during a routine visit.  Even though I walked in fine with pokey, (my sweet quad-footed, yarn-bombed cane) I could not walk out without help.  This can have the effect of being demoralizing if I let it.  So, I have to focus on the fact that I gave those people a real chance to help someone in true need and remember from my pre-illness years how good and gratifying it feels to be able to do that.  It will be a while before I go out without my wheelchair again.  My strength can desert me before you can count to 20.  It has many times.   And when it goes, because my brain is responding to pain signals, so does some of my cognition.   This is why I do not drive.  Let me tell you what a hard thing it is to give up driving under the age of 50.

Dr L is helping me understand some of my dreams so I can really get down to how I am thinking and dealing with this illness in my subconscious mind.  There is so much grieving to do.  There will always be.  I have lost almost everything that makes a person independent from others.  I have lost pride in work well done.  I have lost hopes and dreams for myself.  I have lost my identity, my understanding of myself. 

And so, I am now working on becoming me.

Birth of FB page

Created a FaceBook page for parts of this blog.  Hope to reach more folks who have to live with this monster.  Have lofty plans to input journal entries from early, undiagnosed years.  Haven't gotten to that yet.  The next thing on my list today is NAP.  

Post by Coping Marie Style.

Committed to writing

Today, a friend of mine asked me if I ever thought about writing a biography or something.   She thought it would be interesting to read.  She is maybe the 15th person to ask or suggest such a thing during the 9 years since I first became ill.  The way that this day unfolded for me has me understanding that God means for me to do some writing.  I have such a ginormous amount to express and this is such a great outlet.  Who really cares if no one ever reads it?  I will write pretending someone finds something helpful or encouraging or ... beneficial in some way.

About an hour ago I had the longest, hardest, wracking sob-fest I've had in a couple of years.  All pure grief for myself.  No tears for anyone else or their situation.  This was about 45 minutes of just inconsolable-ness all in grieving what I have lost.  I needed it fiercely.  I don't grieve or cry nearly enough.  I do feel quite better now.  The interesting part is that it was triggered by a Disney movie.  Brave.  A movie, if you haven't seen it, about the relationship of a mother and daughter and the growing and changing they go through together.  On the surface, not something to really bring on such waterworks as I had.  But, here's the lowdown on the previous events of my day.

I had breakfast with my sweet neighbor families who I love and I got to meet my newest neighbor, 4 week old Knox, for the first time.  I held him twice.  He still smells like new baby.  His sweet head still feels like warm fuzz.  At the time I was holding him, I was appreciating him sort of superficially, to medium, not deep in my gut.  I was under such sensory battle to be part of conversations with friends, which I am sorely missing and need more now than I have in a long while.  Happy, healthy children, young ones were only some of the background noise for my brain to process.  There was also a whole other conversation going on across the room, which always sort of throws me off.  My brain seems to not be able to remember which voice it is supposed to be listening to and I literally get lost.  Anyway, like I said, I certainly appreciated him in his presence.

I had wondered if I would have a strong emotional reaction to Knox when I met him because of how severe my symptoms are and have been for many months.  The answer is that I did not have one that anybody else saw, but, boy o boy did I ever have one.

After holding him, then struggling through my day as I recovered from all that stimulation, which I welcomed by the way, I then was asked casually about myself by a new hair stylist.  Describing myself was decidedly depressing.  I quickly turned the talk to anything else I could jump to.  That evening when we were settled in on couches and it was time to pick a movie for tonight, I picked Brave, not knowing really what it was about, only that there was a female redheaded archer by Disney.

Here is how God worked in my day to help me grieve, which I clearly need help to do.  I am constantly surrounded and reminded of loss in my life.  I have lost so much that I hesitate to even think of listing it all.  But, the single loss of never being a mother, never having a baby of my own to hold, to nurture, to love, and not having that child to have the subsequent relationship with, is colossal.  Monumental.  Gigantic.  Indescribable.  Just huge, superbly, horrifingly huge.  And I haven't grieved it or focused on it for quite some time, several years in fact.  But, boy I did today.  Also, I'm not entirely sure I want to see Knox again so soon.  I feel too fragile to face a 4 week old.  How sad is that on the scale? 8.5? 9?  Pretty high, I'm thinking.

It's bedtime now and what I feel left with is a feeling of gratitude.  I do not easily let myself grieve, just as I do not easily let myself access and express anger.  They are emotions I need to make some efforts express.  I know how important they are and that it is critical I not try to suppress them or deny myself their legitimate place in my world.  Still, its hard for me.  And so, my Lord, my Savior and Hero, stepped in and arranged my day so that I could genuinely, privately, grieve the horrible void I live with.  The void where a child should be.   My grief so desperately needed to be expressed.  He forced my hand and of course I heard Him.  Cry, Marie.  Just cry for a while.  This is not yours.  It was never yours and it never will be.  It is lovely and joyful and beautiful and you can never have it.  Cry for your loss.


And so I did.  And I need to mention crying often brings on a headache, but not this time.  This was pure grief.  Not complicated by any stressors of this world.  Not related to my health or any relationships or their issues, etc.  Just comforting my own spirit's sadness.  Pure.

I am going to make an effort to write at least twice a week.  Not really sure any of it will be worth reading but, I guess if even one person feels more normal or connected to the world because of it, that will be worth the typing.  I will go through the notebooks and journals I have kept since I became ill.  I will try to organize them such that they are introduced chronologically.  I want my experiences to make sense.  Or, maybe I could present them as flashback bits.  Who knows?  Maybe that's some of the good of the writing experience for me.  The unfolding of the road ahead.

Have a lovely evening.  If there is anyone around who you love, go tell them that you love them.  If there is no person around, know that you are held in the palms of the hands of Our Father and that His love for you is so great as to be not understandable by our measly human brains.  Feel the peace of that.