Flux and Lala

Symptoms are in a state of flux, as always.  My super great neuro doc did prescribe a new med for migraines (happens to be the exact mixture of Excedrin Migraine but in prescription strength, including all that caffeine).  The first time I took it, I slept only 4 hours that night.  I need not go on about how much a disaster the next few days were.  And further, it didn't work on the migraines.  I'm a caffeine-free girl.  It doesn't like me, I don't like it.  If we cohabitate, we do so in dark chocolate, and in small doses.  That's it.  So, a few days of the last week were spent in bed with full on big bloomed migraines.  Yesterday, Tim suggested trying the old med again, and what do you know, it worked!  No headache so far today.

I know a woman who has the disease I have and is homeless.  I cannot tell you how my heart hurts for her.  I think of what it takes for me, even within these warm walls and on cushy furniture, to get my body comfortable.  And then I think of the fact that she was living out of her car the last time we saw each other.  That was a couple months ago.  She could no longer work, as many with fibro end up having to stop.  Her children had to go and live with their father in another town.  She literally had nothing coming in to feed herself, there were no medications, etc.  I cannot even get in touch with her because her phone was a pay as you go, and she rarely turned it on in order to save minutes.  No one we mutually know has heard anything from or about her.  Imagine for a moment the sheer despair.  Its like Jesus in the garden of Gethsemane.  She is alone.  She hurts.  She's probably always hungry. There isn't an end to the pain in sight.   I pray for her all the time.    I mean, I have a home, electricity for heat, abundant food and water, a bathroom and bed of my own, medicine, doctors I can pay for, a spouse who supports and understands me and loves me, family who treasure me, friends who check on me.  And, it still takes regular therapy for me to keep my emotional head above water with this bucket of stuff I have.  Can you imagine carrying this bucket without ANY of that?    Please pray for her with me.  Her name is Lala.

Today I'm grateful for the fact that I am not out in the cold winter wind, that I was not impacted by the tornadoes, and that Christ came to save us all.

EDIT:
Lala was in touch with me about a week ago and is living in another state with some family members.  She is not out in the elements, and is even in therapy.  Thank you Lord!

Great Wake Up

So, this morning, I was gifted a wonderful dream.  Instead of describing it, I'm going to just relay its effect on me.  I woke up twice during the dream and was determined to go back to sleep to it, and both times I was successful.  I can remember almost all of it, and I keep bringing it back to the front of my mind, trying to concrete it in long-term memory.  The gist is that I am loved and taken care of in a way infinitely more than my human words can convey, and by someone who is the best parts of me, only  x 1000.  At a distance it can be seen as me being controlled by this someone, but it isn't control as much as it is that my situation is literally ideal for me.  Built and functioning for me.  Populated for me.  Made for me.  A dream that left me with a knowing of God.  A knowing that my faith in Him is what He wants it to be.

I now face this day with such a feeling of being loved that I want to just hug about 100 people.  Well, I have access to no people here and now.  I suppose I could go next door but, I'm not going to.  I have hugged my dog, and I had to give the cat her morning injection so, she's still a bit peeved at me.  I have never been surfing, never ridden a real tangible wave like that.  This feels like I imagine that would feel.  I don't have extra energy, in fact, if I walk the dog at all, it will be a short one.  But I do have extra spirit.  I feel full.  The tank is full.

The true beauty of this is that my day to day life is wrought with constant changes that are sometimes hard to adjust to and can be super frustrating.  With a tank so full, I have fuel to help me endure.  It won't put out fires, but it will aid me in getting to the other side of them.  I will still live with whatever my body throws at me, and the neurons will fire when the neurotransmitters emit, and it will hurt but, in the scope of my life, it is small.  I have a spirit-filled tank today.  And I am so, so grateful.

Praying everyone I love can have at least one similar morning.  And not only have it, but take time to recognize and appreciate it.
Have happy, happy days!

Today's Conudrum

So, yesterday, I didn't get a migraine at all.  Didn't have to medicate for one all day and fell asleep fine.  One of just two headache free days in a long slew of them.  And this morning I notice that, huh, I didn't take any of my regular maintenance medications or vitamins yesterday morning.  Connection?  Very probably.  Today I took them, and I'm going now to medicate for a migraine that started about oh, 3 minutes ago and find the darkest deepest hole into which to climb.  Super fun Thursday!!

Grateful it's just my head aching.  I am walking and talking fine.  Nice to have some things feeling normalish (I don't think normalish is a real word but, since this isn't being graded I figure its ok to use Marievish.  Have happy happy days.  JUST DECIDE TO DO IT.  BE HAPPY.

Oh Headache Tree, Oh Headache Tree

So, I've been in a long-term goal to lose XYZ pounds.  And, triumphantly, have lost X and Y.  Now, having to abandon the altered nutrition.  I am getting at least one migraine a day again.  Unfortunately, there's no way to tell yet what has brought them back.  In my hope that it was simple hunger, I am eating solid food and meat, etc again.  I am making sure that my environment is humidified well.  I am making sure proper naps are had.  Going to bed on time and doing more pilates than was usual for me.  I can't get my hands to grip around an answer.  My medicine is working when I take it.  The onset is so rapid that I don't have any time to drink my pink saltwater remedy.  The issue:  I am prescribed enough medicine to get through 9 headaches a month.  Nine.  I am simply not permitted to have more than that. lol. The insurance company thinks that if that dosage doesn't work, then it is the wrong medicine for me at this time.  (And I would not argue that fact.)  The prospect of me having to change migraine medicine is, let's call it, horrendous.  Not sure if that word really covers it.  Will have to keep thinking about proper adjectives for it.  

Grateful that the medicine I currently have is nipping them for now and that they are not lowering my quality of life dramatically.  Praying, and asking you to pray, that whatever is causing them comes to a close.  

Nov 30 Catch-Up

It has been a long time since I have felt clear-headed enough when the computer was also free for me to write.  (There's some kind of war going on lately whereby my husbands goblin gang roam around looking for treasure, slaying all those in the way....and I guess battles need to be tended to rather immediately...)

Much has happened to me, emotionally at least, in the last several weeks.  I have had some eureka moments which I hope stay with me, even when my fog is very dense.  First, I really do think I am gluten intolerant.  Also, intolerant of additives and preservatives.  I have been on a juice diet for about 3 weeks, beginning the 4th now.  It has helped me lose some more of the pounds I want to whittle away.  I plan to stay on it until the New Year.  I am eating some small solid foods, but trying to really just give my body nutrients it can use more immediately. I am down 20 pounds with only 10 to go by May of next year.  That's within reach.  I am not letting myself get too hungry, that's a sure fire migraine trigger.  So, I'm enjoying that small accomplishment.  It is especially successful since I have accomplished nearly all of it with nutrition change.  I do some pilates a few days a week, but not enough to burn any significant calories.  I'm not in the vigorous exercise category, but the sedentary one, unfortunately.

Second, my symptoms are still moderate, have not gotten severe again for more than a couple days at a time, even though the weather has been cold and wet for about a week.  I don't know if the nutrition change has helped to keep things more balanced so pain isn't triggered, I have no idea why this spell of cold wet weather is treating me ok when some in the past haven't.  I do know one thing, I have only left my home once in the past 4 days and stayed indoors only.  Blessed with warmth and shelter.

A friend suggested a book to me which was fantastic.  I listened to it but, I now want to read it also. It's called The Shack by William P. Young.  It has given me a new and different perspective about my spiritual relationships and what I want my goals to be.  It has pointed out to me once and for all that our human striving for independence (the thing that was stripped from me by this illness) is nearly on the same level as idol worship.  It is not of God.  In fact, the more we try to control whatever in our lives, the more we prove to Him that we don't trust and love Him in the way He wants.  Independence from Him is wrong.  We need to need Him in order for our hearts to open enough to let Him in.  So, I now see that before I got sick, I did seek independence fiercely.  I had been somewhat controlled by others for some years and I was then beginning to do MY thing.  I had MY goals, MY plan and path.  He simply wanted me on His path, to know His plan, in His time.  So, for me to get there, it took stripping me of my independence LITERALLY.  Now, I frequently need help.  Physical, emotional, psychological, logistical, mental, all kinds possible.  And I ask for it when I do.  Or I try to, and I usually accomplish it.  I am deep in the category of needy now.  I need Him.  I need others.  This creates one other beauty, a grateful heart.  When a heart is grateful, it cannot carry anger, resentment, bigotry, whatever is dark.  Grateful hearts know God's love.  They are filled with it and those around them are touched by it.  This is my prayer for my life.  That others know I have a grateful heart and that I want to share God's love with my brothers and sisters.  He loves us all, all of His children.  He loves killers, rapists, bombers, Grannys, girls, boys, teachers, stockbrokers, all of His children.  None He created are unloved.  I'm going to stop now because I'm both unsure if I'm making sense and I don't want to misrepresent or spoil the book if any of you'd like to read it.  It is just a stunning piece of work.

Last Wednesday would have been Monica's 42 birthday.  I was okay most of the day until I saw a beautiful, breathtaking piece of art created of her by our brother.  The water works opened again.
I made and ate a pumpkin cheesecake because I'm told that is what she'd have liked for her b-day.  The real interesting thing is that on the next day, Thanksgiving Day, I felt fine.  I had spoken to everyone I loved and left many messages for others.  So, while war was waging in here on the keyboard, I decided I'd watch Dances with Wolves, having never seen it.  It's an old movie so, I'm not afraid of spoiling... when they murder Two Socks, I lost it.  I cried so hard that it was painful.  I could not stop.  I think I wept for 30 minutes.  Tim came and found me part way into the mess and held me.  I just could not handle the meanness to the innocent.  It crushed me.  I know some of that sadness was leftover from the previous day.  I also know that some of it is the fact that I am drawn to be near my loved ones during the holidays, and I am far away.  I also know that no matter how much I understand why I am now needy, I will still grieve my loss of independence.  And I do.  I surely do.

I must go do something else now, as I can no longer feel my hands or feet from the cold.  Circulation in them is poor, at best.  Also, its lunchtime.  Yay, more juice!!

Grateful for those who love me, really love ME, who I am, who I've been, who I will become.  Grateful for the abundance of the situation in which I live.  Food, shelter, water, heat, all of it.  Truly grateful.  Praying for lots more clear headed days so I can write in full sentences which complete my thoughts, instead of half-thoughts.  I do enjoy this so.

Have lovely days!  Decide to be happy.

Surprisingly Moderate

The weather has been rough here for a few days.  In fact last night there was a tornado warning at 3 am for about 30 min or so.  Weather like that usually creates a combo of symptoms that have me feeling, let's see how to put this, like I've dropped into a conscious coma and been set on fire.  Yes, I think that does it.  So, imagine my surprise and delight at my ability to walk around a bit and do a few chores in a row.  I love moderation.

Bittersweet that the fall used to be my favorite season but now, it really is my most painful one.  I haven't been out to pilates for 2 weeks.  I hope to go tomorrow.  We'll just see how today and tomorrow morning go.

I am still keeping my waking hours as full of pleasant things as I can, although, sometimes pleasant things have a third or fourth row seat to the show that is ME.  And a few days ago I began selling some of my little creations on Etsy which does connect me to the world at large again.  I so miss that connection.  Last week one day I had to reach for my narcotic pain med 3 times, which I've never done in 10 years.  I was actually only out of bed that day for about 30 minutes, in spurts.  This week is better so far.  I try hard not to need to reach for the hydrocodone and I usually succeed.  I can go for many, many months and handle my pain in a way other than pharmaceutical.  I used to see relying on the pain meds as a weakness, or a surrender if you will.  Not anymore.  Not at all for me to judge.  If a person in pain cannot handle it, whether they have tried something else or not, let them have medicine.  The time to talk and think about how to handle pain is not when you're IN the pain.  It has to be when you're in a valley, not a peak.  I have to plan to be in pain.  I have to know what to do, how to think, how to treat myself, how to speak to people so they can understand me.  It's a whole different version of me.  But by the time I get to the peak of the mountain it's too late to expect me to be able to do anything except survive it and follow a rudimentary plan of action.  Some folks might not know how to make a plan.  Some may not realize that a strategy is even necessary or helpful.  And I think they are the ones who do rely so heavily on narcotics.  Further, I feel for them now.  I feel a compassion that was not in me before.  I used to think they took the easy way out.  Really, they are taking the only way out.  The only other way out is a permanent one that we need not address here, in this "joyful and thankful" post.  lol.

My little support group of ladies is made up of 6 of us who all have my illness.  All of us have some extra different disease dangling from the bracelet, if you will.  One has rheumatoid arthritis, one has bipolar, it goes on and on.  Anyway, we haven't been well enough to all meet for a month now and I miss them so.  We meet on Mondays and the texts keep saying "can't get out of bed"  or  "have a migraine" or "unsafe to make the drive".  A motley crew we are.  But I told them yesterday that at least we now have each other to share those things with.  Before them, I had few people I could just pick up my phone and talk to who would TRULY know what I was going through.  Now, even though we aren't getting together, at least the Lord has put us all on a cross-path and we were able to meet.

Today I am thankful for the fact that I am ambulatory despite the crap weather and that my home did not become damaged in the tornado last night.  Also, I've lost 19 out of the 30 pound goal I'm working on, so, thankful my efforts are paying off.  Yay me!!

National Black Cat Day

A nod to my cat, who has been with me almost from the start.  She rescued me from the loneliness.

I hope I write sometimes when I feel really fantastic.  I don't go backwards and read my previous posts.  I'm sure I don't blog like some others do where they're promoting something or telling a story.  I just write how I feel or what new thing helped or hurt, etc. and maybe to me it seems like it's mostly on the negative feeling days that I am compelled to write.  I guess that's the cathartic part, the therapeutic part of it for me.  I need to go out and get some sunshine.  And it is a beautiful day here.  There's not any reason for me not to be happy.  But, I feel empty.  Not unhappy, just empty.  I shouldn't but, I do so I will accept it.  I am cooking something I really love, a squash pie.  And I'm finishing my laundry without undue pain.  Also going to work on my little crafty creations later, which feels sometimes like such a waste of time and money.  Who cares about those little pendants or the crocheted muffs?  What does it matter if I make them or not?  Yes, my house will feel more appealing if there's not clean laundry strewn across my living room but, so what?  What am I left with?  Squash pie.  And in the midst of all this "who cares?" feeling is the "holy cow you ungrateful *****" that I'm not thankful enough for it all.  How can I possibly have a day like this in all the blessings on my list?  But I am, and I do.  So there it is.

Oscar is trying his very best to lure me outside to play.  So, I will now be thankful for him and take him up on it.  Having faith that at least it might help.

Grateful for the fundamentals.  My shelter, my abundant food, clean water, indoor plumbing, electricity, peaceful and happy marriage.

Someone have a happy day.  Mine is at risk.

Oh, How I Hate That Dream

I had it again.  The dream, or nightmare rather, that I loathe.  Writing it here again, hoping to chase it out of my subconscious.  I know why I had it.  Yesterday morning was easy.  Walked the dog, did laundry, other chores, played with my clay, listened to music, all until the driver picked me up at noon to go for my brain MRI.  That ruined me.  Not the MRI.  The drive down.  He took the roads in such a way that my body was literally shaken badly enough that by the time we got there, I could barely stand, and I didn't have my chair, only my cane.  Just the manner in which he drove brought every symptom on and turned them to MAX.

As before in the dream, the person after me is someone I've loved all my life.  Someone I still love now, someone in my family of origin.  I'll use the pronoun he for the sake of writing but, I never want to disclose who it is for fear of hurting this beloved person.

He controls me.  He makes sure I go nowhere without him.  He has told everyone, everywhere we go that he plans to kill me in a very surprising and painful way.  We went to a club type event and they all knew what he was planning and no one would help me or hide me or defend me.  They all just left me to be terrified of what would come.  I was trying to convince them that I'd done nothing wrong to him, I didn't deserve it, but he had their ear.  I pleaded with everyone to help to no avail.  I tried to hide and was found again and again.  He laughed in my face at my figuring out I was in his grasp.  He put me in a car and told me to leave knowing I didn't know where I was so, I'd inevitably end up returning to the spot He was in waiting for me.  There was no escaping him and he enjoyed every second of it.

He represents my illness, according to my therapist.  That rings true for me.  When symptoms are at MAX like they were yesterday, it does control me.  A better way to say it is that it limits me but, really limiting is controlling, one just sounds a bit lest negative than the other.    It is always waiting for me, no matter where I go, it is with me, taunting, telling me there is no escaping it.  Just when I am enjoying some freedom from it, like yesterday morning, it comes in and warns me of my painful imminent death at its hands.  Reminds me that I am the prey and it is the predator and it will never stop until it succeeds.  I understand that my illness is not known to be terminal or even degenerative.  I do.  I also understand that my quality of life in general now is far higher than when I first got sick 10 years ago.  I try hard to mitigate what I live with and how I live.  But, quite a lot of how I feel is outside of my control.  For instance, the driver yesterday, unbeknownst to him, brought on every symptom I can have.  From severe pain to migraine to fatigue to depression,  All in one 20 minute ride.  And after, I could hardly even stand up.  I had to be helped to walk to the MRI appointment.

Further, this morning I had to get straight out of bed and into my wheelchair.  Something I've not had to do for quite a few months.  I'm angry.  I'm frustrated.  I'm sad.

I'm going to dress and eat and go to my pilates class at 9:30 when another driver will come to fetch me.  Despite wanting very much not to leave the comfort of my home, I'm going.  It has helped before, helped very much.  So, I am just going to hope for the best and trust that Christ is with me.  Frankly it couldn't be worse than yesterday's spectacle unless I lose consciousness.

This morning, I have gratitude for this computer and the fact that I can type these thoughts.  You see, it isn't very hard at all for me to tell the story on the keyboard.  But, if I tried to tell the story verbally, you'd hear a quite different description.  My brain blocks so much of my vocabulary from my mouth that I end up sounding like I never went to school in my life, let alone college.  But, somehow, I can make sense of my thoughts still, and am able to use this cathartic way to get them out of my head.  So, today, if you can have an easy conversation with someone, be thankful for it.  Some of us can't.

In ALL Things Give Thanks

As I'm going about my morning routine, feeding and watering animals, putting clothes in the dryer, scooping litter boxes, I have had an idea.

I am going to be consciously thankful for my fibromyalgia.  There are times when I have been thankful for some aspects of it before, but not always, and not as it unfolds, symptom by symptom.  I am going to CHOOSE to see it as a BLESSING in my life for which I was picked.  After all, there is absolutely no reason why this fact would be wrong.  Yesterday's passage in Jesus Saves spoke of His sovereignty and love.  It referred to why we imagine that He lets cruelty happen in our world, and the finite nature of our minds.  It is simply not for us to understand.  To spend time trying is to waste the glorious life He has given us.  So, I am making a choice today.  I don't know that I will be able to stick to this mindset when severe symptoms clobber me but, I am able to commit right now, this morning.  So, I will give it a practice run and see how it fits.  I would like it to fit snugly but not tightly.

Reasons why my debilitating illness is a BLESSING:
1. Hopefully, others will experience in me a presence of Christ's love.  Ideally, they may see that as an example.
2.  I provide a genuine reason for strangers, friends, family to demonstrate generosity and kindness.
3.  I am provided a glimpse at those who are hardened by the world and do not care for humanity or the suffering of others, thus giving me an opportunity to pray for them specifically.
4.  I can live in a purposeful way.  I can choose what to do, and when (within my limits, of course.  I cannot go rock-climbing, lol.).  I am not required to go through busy motions, filling my mind and soul with pollution.
5.  I try to live happily and joyfully whenever I'm able.  The result is that in my home, a man, a dog and a cat are all happy and content.  Thus, if I pass before the animals or my spouse, there is a greater chance that they will be able to continue to spread the happiness that I hope I have planted.  (I do not presume to take full credit for anyone's happiness but my own, but I do know that I have created an environment of love in this home.)
6.  I give others an opportunity to thank God for their good fortune and good health.
7.  I open discussions between children and parents about folks who have different health needs.
8.  I am funnier than I was before.  I take everything less seriously.  I laugh more.
9.  I've been given an opportunity to get to know both my parents in their retirement years, and they are not only loving and supportive of me, they are healthy themselves.  Many do not get such an opportunity and I do not take it for granted.
10.  I no longer dwell at all on the future or what it may bring.  I am in full awareness that I do not now, nor have I ever had a crystal ball and to pretend I do is an insult to my Savior.  His will will be done.  Not mine.
11.  I can observe Him everywhere.  In all creation.  In every flower.
12.  I have truly learned once and for all that fear is the absence of God.  Nothing more or less.  It is a creation of darkness and I will have no part in it.  (Not to say that some of those ice-pick stabbing pains don't alarm me sometimes, they do.  But, I am only very temporarily shaken.)

I've gone through my one allotted cup of coffee now so, I will go and get on with my day.  The bus comes for me in 90 min and I want to be just a bit more productive before that.

I will try to not strive for the independence my humanity craves, but instead go to Him when I am in need.  He said He will never abandon me.  Time for me to prove I believe it.

May you all have happy, happy days!!

Balance

It has been a while since I've updated, it was nice to be missed (my lovely SIL).    I have worked through some of my grief.  I don't feel sad at all most days.  I was quite disappointed when we came home from a trip to the mountains, (my favorite!!!) that I had altitude sickness while I was there.  But, it was pointed out to me by a friend that I still had a great time and got to do such fun activities, and was in general blessed to have the opportunity.  So, I promptly got over myself.

It's interesting that we find a way to want things to be the way WE want them to be, not how they should be or how HE will have them be, as if we have any power.  You'd think with faith would come a comfortable relinquishing of desire to control, but it doesn't.  We want what we want, when we want it.  Most of us do, anyway.  I am guilty.  Have humans always been like this?  And those who "go with the flow", "let go, and let God" are sometimes judged as inactive or unproductive or surrendered.  Really though, they have got it right.  Maybe one day I will be able to stop trying to be in control.

Anyway, I've been lucky to have stumbled upon a little support group.  A small gathering of ladies, all who have fibromyalgia get together at a local coffeehouse.  It is so meaningful to have them to chat with, and have their names and numbers so that I can keep up with them during the week. Sometimes you just need to talk to someone who knows what you are experiencing.  I'm especially grateful for the group leader /coordinator who drives me there and home.  So much about my life causes me to feel outside the normal boundaries of social gatherings, but this group brings me back to what I know is factual, that I am a normal woman, responding as best I can to a can of crap, which I'd much rather put back on the shelf.  It is a blessing.

I am also actively asking Christ to be with me in my home during the day.  I used to fill the silence here with noise.  I thought it made me less lonely if TV was on.  It didn't really matter much what channel, as long as it wasn't high drama or news.  Too stressful on both those counts.  But, I'd keep a DIY show, or a cupcake war, or buying a house in Alaska, just whatever so that I was there and not here.  The change happened when we dropped our cable.  Now television is not as easily available, not as much anyhow.  And frankly, I do know how to turn it on and find shows, but, I just don't.  When Tim comes home, then we turn it on after a while.  But, I have begun really listening to music I love again, and singing again.  I even thought about getting my guitar out.  I didn't get so far as to do it, mind you, but I did consider it.  And, I listen to some audiobooks sometimes.  But, and this is the new thing, I live in the quiet because I want to hear Him speaking to me.  I feel like there is something for me to know or learn or do but I don't know what.  So, I spend some of my time every day just quiet.  It was a challenge initially, there was a noise withdrawal issue.  But now, I cherish it.

I live in such abundance.  In a country of abundance.  In a time of abundance.  I am so grateful for it because it allows me to be physically, mentally, and emotionally comfortable.  I see living conditions in other parts of the world and I wonder if I'd even manage to survive there because the environment is so harsh and I've got such a small window of acceptable requirements.  I hear about or read about folks who are emotionally unstable or impoverished and I am grateful that I feel compassion for others in my heart.  I pray for those who lack the ability to think clearly for themselves, hoping they have trustworthy caregivers in their lives.  I have felt profound confusion which is not the same as mental handicap, but it is my measure of comparison.

It feels like life this week is starting to find a balance again.  Fatigue was my worst symptom this week.  Twice I slept 12+ hours a night, and took naps on those days.  Trying to go with the flow.  Wanting to get a few things done but, also not putting undue pressure on myself to perform activities.  Endeavoring to be the Marie He wants me to be.

Thankful that I live in an age that spreads my words to someone who might benefit from them. Thankful also that I was raised to give a damn, and that I know how to say so.

Have happy happy days!

They Won't Come

I want to cry.  I want to cry this afternoon more than I've ever wanted a piece of chocolate.  I can feel inside me that I need to.  But, the tears won't come.  I now realize what I hadn't thought of before Monica passed away.  Getting through the grief  of losing her won't be like anyone else I know.  I won't be able to just compare and console and understand in a way that is ideal and healthy.  It will take me much, much longer.  And cognitively I will stay in a fog for more extended periods of time.

One component of my illness is depression, which makes perfect sense considering pain is ever present.  I am on an effective regimen of anti-depressants (I take a cocktail of 3 kinds every morning)  and would not consider going off them for any reason.  Not only will I not do it, my entire team of doctors would not allow it, I'm certain.  And those medicines are the reason I can't cry for her today.  I want to.  I miss her.  Anti-depressants effectively shorten the range of emotion available to us.  I no longer can feel my lowest low feelings.  Also, I can no longer feel my highest joys.  My range is maybe a 6 to a 14 instead of  a 0 to 20, if numerals help you.  I accept that because I must.  I am at peace with it only because I acutely understand the alternative provides zero quality of life.

I have been trying to make myself cry for about an hour now.  And I don't want to just get on you-tube and find some random video that is tear-jerking and use that as my way out of this.  I want and need to grieve the loss of my baby sister.  And, damn it, I can't cry.  Not today, anyway.  I want to pass through this grieving period in a reasonable time, and at a reasonable pace, naturally in my own way, but not delayed because of stupid chemicals that won't let me cry.  I am sort of abandoned on the grief highway and left there, not able to go in either direction.  I can't come out of it because well, there's deep sadness left for me to feel and process.  And I can't dive in to the deep sadness because my medicines won't allow it chemically.  I'm on the grief Exit ramp.  And I can't get there.

Maybe one day this week, I'll accomplish progress on this front.  I hope so.

I'm so grateful for the anti-depressants and their function of stabilizing my mood and masking some of the physical pain, that they are affordable and that I have found some that work for me without horrendous side-effects.

Here's to happy days.  Hoping y'all have them.

Grieving wishes

The thing about grief is that it sneaks up on you when you think you've finished with it.  Sort of like dust on furniture.  You can dust thoroughly and carefully, not missing any areas.  You can stand back and admire your work and feel the accomplishment.  And, at that very moment, the accumulation of dust begins to gather again.  This is how I live with grief.  It is ever present for me.  Today, my grief is for myself, not even about my latest huge loss, my Monica.  I simply went to one low-key social setting, and back home today but, for some reason, I found myself wishing that realities were different.  I kept thinking, I wish I could drive.  I never would have taken that corner so quickly and my body wouldn't have pressed so hard against the door.  I wish I could be the one to decide when to pull out in front of another car, using and trusting my own judgment.  I wish I could leave the outing when I wanted to, not when my loved one fetched me.  I wish I didn't have these wishes, but I do.

I wish I could do a different kind of exercise.  I am left with only "safe" options because my body cannot be relied upon to remain strong through any one event.  I wish I had somebody who would try another exercise with me, to just see if I could do it, thereby removing any danger for me and being there if I should need help.  I wish I could sign up for trampoline fitness classes.  They are offered and available just a few miles from my house and it sounds like GREAT fun, but, again, I'm being discouraged by my husband because it could be something which sends me into flare.   (I'm going to still go one day this week and try it for a while.  I will never know how hard or soft the bouncing is unless I give it a go, so I'm going to.)  I wish I weren't so desperate to find a fun, a truly fun activity to do.  I wish I could do exercises which I really feel building my strength and endurance.

I wish I could tolerate being outside in the sunshine for even a half hour each day.  Or, for even 10 minutes.  I wish I could walk the dog without having to get up at 6 am to do that, because of heat intolerance.  I wish I could leave for a dog walk with complete confidence that I will be able to make it home on my legs.

I wish I did not wish for things I don't have.

I wish I had independence and I could go see any movie I wanted at the theater.  I wish I could decide to go get a haircut and then DO that.  I wish I could FEEL progress in my life.  Any progress.  I wish I had enough financial input in my household to warrant my giving more generously to others.  I wish I could take handmade crocheted items I make to the people I make them for, and not have to put them through the mail or rely on someone else to ferry them there for me.  I wish I could see the expression on even one face of someone enjoying what I crafted.

I wish I could dust all these wishes away and feel just gratified with what I have, but, somehow, my season has turned again and I'm back at wishing.  I really, really wish I didn't feel this way this evening.

At this point, my therapist would say, "How does it feel to wish for so much and not have it, to wish for perfectly logical and realistic things and  have no expectation of getting them?  What is that like?"  Here is my answer.  "It feels ever so sad."  Also, "It feels heart-wrenching" is accurate.  Further, "It feels like I can't smile and like I can't think straight because of the grief."

I suppose right now, I am dealing with a deep loss at my core, my dear sister, the deepest loss I've ever suffered behind the loss of my own health and my personal identity.  And to have just the dust of my daily life settling on that void is really throwing me for a loop today.  I can't find a balance.  I have, unfortunately, found a hole.  I'm not in it yet, and I hope not to go down it, but, I do see it and I also feel its pull on me.  I wish that so, so, so much were different about how I am spending my precious time here in this world, in this body.  I really do.  And it makes me sad.  To not be sad about it would be dishonest, I think.  It would be denial, and untrue.

I wish I could feel and function normally again.  I'm even now through tears, thinking of what I could possibly offer to God as my bargaining chip.  Of course, I have no chips to play my hand with.  After all, He dealt my hand to me so, he knows I am holding a pair of deuces.  

Maybe I will be able to dust it all fairly swiftly, but more importantly, thoroughly, and move on through in a timely fashion.  Hopefully, I will not get any closer to the deep, black hole, for that is truly TERRIFYING, in case you didn't know.  I wish I didn't.

Because I've made it a point to end my entries on notes of gratitude, I am grateful that I have this venue to record my sadness, my wishes.  Now they are on a screen in front of me and I feel justified in feeling this sad.  So, now I will go to bed and I will have faith that He will bring me to tomorrow with renewed vision.

And it's bedtime in August

It feels like too much time has passed without recording any thoughts or events.  I'm not sure if that's true, but it feels that way tonight, so, I'm going to do the "stream of consciousness" thing and see what comes out.  Just finished getting ready for bed, so this might have potholes.   Here goes:

I have coped with quite a lot successfully recently.  And I think its important to recognize that.  Not to be too proud but just proud enough that I am aware of my growth and how my life is improved by  it.  I have been controlled by anxiety before and I have also lived in relative isolation because of my situation in society, but that's not me anymore.  Not at all.  Now, I rarely have fear.  And it is almost never a factor in deciding where to go or what to engage in.  Not to say I'm still not careful about what I undertake.  I'm just not afraid anymore.  I'm realistic.  And, I'm also much less self-conscious than I have previously been about wanting others not to hear me struggle to speak.  I am making a huge effort to bring more people into my life, and to keeping the quality ones there.  I haven't made this a priority before but, I want it to be more so.  I want to have more of a social network, and I'm actively doing something about that.  Which is lovely because, I not in a complaining mode, or even a problem solving mode, but an action mode.  It feels great in action mode.  I find that I miss this mode as much as I miss everything else.

My sister passed away a few weeks ago, and I am able to reflect on my relationship with her as everything I could have hoped for.  We forgave each other everything before saying goodbye, and now, I can feel her super-social influence in my life as I meet new friends often.  Her daughters carry on her smile and her eyes.  And I am so relieved to know that she no longer lives in that wrecked and ruined physical body.  And, I don't feel even a bit guilty about that relief.  She would feel it too, and would feel it for any of us who she loved.

I have begun several different hobbies and I think I want to stumble onto one which will be so clever and easy and inventive that I can market and produce a product which is healing, fun, healthy, etc.  I know it, in fact.  It's at the base of me.  I want to be well.  I don't want to read on discussion boards how others with my illness are so very very depressed.  That is so dangerous.  You can't know unless you've felt it, just how dangerous that is.  I want to discover something I can message them and say, hey, try doing this for a few days, it has really helped me.  Also, its natural, inexpensive, etc.  I am desperate to keep more drugs out of me.  I am continuing to strive to get and keep my body into a shape which is acceptable and sustainable as I get deep into middle age.  I had some help with the math recently and discovered that I actually am not even 45 anymore, I'm 46!  I have to get a grip on this because its only going to get harder.  Stupid sweet carbs.  Of doom.

I felt good during pilates again today.  It was my last one-on-one session and from here out, I will take mat classes for a couple months.  I came home exhausted and ate lunch and then went to bed, as I have every time.  And this time, I didn't wake up symptom-free, but I am feeling pretty good if I can be this cognitively aware at bedtime.  Lots of times I am doing well to form elementary sentences.

Have a looming sense that I should give the dog a bath tomorrow.  But, that's probably not going to happen.  It could but, I wouldn't lay down any money on it.

I'm so, so blessed.  I'm able to see what some cannot.  I'm able to hear what some cannot.  We all have special talents, as my 6-yr-old niece would say.  I'm not sure what my very specific talent would be in her eyes but, I hope it is along the lines of kindness.  I hope whatever it is keeps me close to Christ.

Loss

Death seems to have hit my life in a spider-webby sort of way.  Or it has this summer, anyway.  I lost a member of my family of origin, the first member of that family to pass, and the closest person to me who has died. In addition to that death, I am aware that 4 people I know, 3 very well and 1 as an acquaintance, have lost dear animal companions.  Further, an online friend lost her mother suddenly.  My mom reports that Monica's husband's aunt passed last week.  (Monica is my dear sister who now guards me as an angel and began that job on 7/12/15.)  And yesterday, my brand new friend told me that she was visited by the police and a pastor who informed her that her mother had been found on the floor in her Florida condo.  She couldn't reach her mom on the phone on Thursday and started to get worried.  And for good reason.  Her mother had indeed died alone in her bedroom.    So, if we are arranging these angels now, we have 4 people and 4 animals in the span of about 3 weeks.  For me, that is a lot of loss.  Now, obviously I will not grieve for the folks I never met, nor the animals, but it does make my heart hurt a little.  And my heart is very beaten up from the loss of my baby sister.  I actually wish that I didn't care quite so much about anyone else's loss, the tangential ones but, I do.  And that is part of me.  I know how sad those people are.  I know how frustrated they feel and how unfair the situation became.  And I feel it.  Some of it is quite close to me.  I find myself praying for comfort so often that I have begun feeling selfish during my "prayer conversations".  I force myself to focus on some issues or events or people eliciting my gratitude.  I can do that, fairly easily, after I instruct myself.  But, forcing it is unusual for me.  I love being mainly thankful and not so wanting from our Lord.  I won't beat myself up too much about it, remembering that I have to walk through this grieving valley and He wants to comfort me, its not a special treat or something.  It is wrapped up in the combo package that is His love for me.  But, it does feel uncomfortable.  And in a few days, I will physically face everyone in the world who loved my sister, all of us grieving our individual lost relationships with her.  I feel stable at home here now, writing about her and reflecting.  But, when I see the pain on the faces of my parents, that is when I know I will need the Lord the most.  It is easy to sit here and tell myself that she simply finished her journey.  But, it will take some time before I can look at a photograph of her and not weep.



Grateful that she was loaned to a family in which I belonged.

Wow, what a fog

Now, under what's considered normal circumstances for me, fog is something that I adapt to without much hardship anymore.  In the beginning,  the mental fogginess of fibro was truly scary because I remember wondering if I'd had a stroke or something.  But now, I just know to take necessary measures to keep myself safe from injury and I try to minimize whatever stimulation I can so as to not get even more confused.  It no longer really alarms me, it just is what it is.  It is debilitating so much at times that I did give up driving.  So, that's a lot.

Here is how yesterday's fog compares to my regular fog fare.  First, know that I am grieving right now.  I am losing a sibling.  She is not yet gone from this world, but I have said goodbye and I find myself sobbing spontaneously wherever I am, doing whatever activity I happen to be engaged with.  The loss of her will be the closest person to me to be lost and it does feel surreal.   Yesterday, I left my stove on for 4 hours.  Yup.  No, not a gas stove, so no flame.  Just burned up a teapot. ( I have a kind that doesn't whistle.)  I would say that in regular fog I sort of swim through brownie-like batter (might as well have yummy descriptions, right?) mentally.  So, ok imagine that.  Now, I find myself sludging through a pot of yesterdays breakfast oatmeal still in the pot on the stove.  There is a whisper of moisture for me to try to grab on and swim/push myself through but, really, after only one step, I'm so exhausted that I could literally sleep.  Oh, and also, in the brand new spot, I now have no idea why I'm there nor how to navigate anywhere else.

I was speaking with a woman at our insurance company the other day, and for maybe only the second or third time in my 10 years with this, Tim came over and just gently took the phone from me and took care of the conversation and issue.  I simply could not be understood, not by the woman on the other end, nor even by him, and he even speaks Marie-fog (well, he doesn't speak it so much as he is fluent in understanding it).

Do you see the problem?  It does not bode well for one's safety when one is so stuck, so surrounded by the inability to even recognize the familiar.  No, it is more the lack of understanding outside stimuli in any sequential way.  Puzzle pieces do not fit.  None of them.  At all.  In fact, I've got about 10 pieces each from about 50 different puzzles to try to get some coherent understanding of my immediate future from.  I can do something tangible.  I can physically crochet.  But I cannot talk about what I'm making or why.    I can physically get food out of the refrigerator.  But I cannot figure out what to eat among that food.  There are just random containers of stuff sitting on the counter.
I can call a loved one with a specific fact in mind to convey, and I am only successful if I write it down on paper and read it.  Yesterday's oatmeal is just not a place you want to find yourself.

I'm a pretty decisive personality.  Historically sometimes, too much so.  I decide to act, and then there is no going gently, I act.  I am used to that kind of behavior and I'm good at it.  Now, I find myself  walking, and then standing in a room with no idea why and still unable to decide what to do about it.  I stand there just looking around that room for who knows how long.  Should I stay there?  Leave?  What's up with this room?  Anything good going on in here?  Why does it even exist?

I know fog during grief is common.  I also know that for me, fog is one of my regular fibro symptoms.  But, for the measure of grief I now bear, the fog will be deeper and darker than ever before.  And I predict it will last a long time.  I will miss my sister for the rest of my days, even though she is not yet quite gone.

Brain damage

Well, I just read an article with so much validated research that I know it is proven.  So, there is no question of its truth.  Here is the point.  Fibromyalgia causes brain damage in people who have it.

               Researchers found that in people with chronic pain, a front region of the cortex associated with emotion fails to deactivate when it should. It's stuck on full throttle, wearing out neurons and altering their connections.

http://www.sciencedaily.com/releases/2008/02/080205171755.htm

Now, that is quite a depressing thing to read.  How can it not be?  They've proven that as much as it sucks living through the pain, doing so actually damages my brain.  Hmmmm you say.  Why bother to keep showing up?  I know that sounds drastic, and I am by no means near that kind of thinking but, come on, it is high time that the world stop judging or assessing "what we are going through" because frankly, they are going to come up short every time.  For one thing, every time, my brain will be damaged a bit more.  Also, how could anyone feel what's inside the very private vessel that is me?  Impossible.    

Think about that one line for just a moment.  "Stuck on full throttle."  So the first thing that comes to my mind is a car.  A car stuck on full throttle is a disaster waiting to happen.  What else has throttles, maybe an elevator?  Well, the floors are going to stop up there somewhere or down there somewhere.  How about even my electric toothbrush?  It will burn out and I'm imagining smoke will be involved if it stayed stuck on full force.  Here is the point - anything stuck on full throttle will end abruptly, permanently and probably very messily.  I cannot think of a single exception.  Nothing, not any man made device or machine, nor any animal I know of can sustain being "stuck on full throttle".  It hands my mortality to me on a plate.  Huge questions arise about how damaged my brain will be when I'm 55 or 65.  After all, medicine cannot treat the root causes yet at all.  They are just now figuring out how it effects us.  It is quite a thing to read about a disease you live with.

So, how to bring this knowledge into my soul cohesively?  How to embrace the damage to my brain which is happening every single second of my life.  There is an answer.  Just give it to Him.  There is nothing else I can possibly do.  If I am to enjoy any of the life I'm given by Christ's sacrifice, I have to also let Him help me carry this burden.  To try to carry it alone, that would be suicide.  And, for those of you who know me very well, you know I do not use that word lightly.  I would never.  

Today I pray for folks with pain like mine who are not close to the Lord.  I pray that they can find their way to Him, that they are guided in His direction and develop a "besties" relationship with Him.  Without Him, how could I actually face each day?  Really?  I mean, full throttle always?  Come on.

Thankful that I was raised in deep faith which comforts and nourishes me during all the moments of my life.  Even, and especially during the brain damaging ones.  

Have happy, happy days.

May

It's not that this month is uneventful, I am just having trouble grouping everything that's happening into their proper sections and figuring a way to write about them.

First, could I just say how fantastically GRATEFUL I am that my health is standing up to these last 3 tornado warning evenings without quality of life loss.  I've been able to be not only up and around, but not at all unhappy or more than medium discomfort.  This has never been the case for me before when there is severe weather.  Once, it actually robbed me of the ability to think of words to ask for help, which is quite scary, let me assure you.  Tonight and tomorrow are supposed to be more of this same kind of weather.  Its already rainy and stormy here, which began this morning, and I still feel decent.  Not in a wheelchair.  Not reaching for medicine.  Not in tears.  Basically, just LOVING LIFE.

Okay, now that that is covered, I think I can cover some other stuff without minimalizing my current situation.  I had a super lovely vacation recently with a dear relative.  I reached out to her during the time several weeks back when I felt so utterly lonely and she set this trip up for us.  Such a beautiful gift, these puzzle pieces that make up our hearts.  I now have a fantastic friend in her, as well.  I hope she feels the same.  It was a much needed change of scenery for me.  And, at the end, there was a little "brain injury" mishap on my part but, the concussion seems to have healed now and I've managed not to get another while symptoms were still on the burner.  Apparently, as long as you don't sustain another until the first one has had 7-10 days to heal, or you have no more symptoms, your brain heals from them without problem.  So says the ER doctor.

Also, a lovely bit about sustaining the "brain injury" is that I was entirely bed bound for about 2.5 days and I only got out with help to sit in my wheelchair and then have to be pushed and have help getting onto the toilet.  So, needless to say, my spouse was vital in my care.  And, we managed.  I can't remember having anyone at my beck and call like that before.  We have walkie talkies which were put into use, only because I just hate yelling.  I hate hearing it and I hate doing it.  He brought food.  He moved heating pads and brought warmer socks.  He kept the animals in food and water. And, I have to say I was honestly tempted to continue feeling "brain injured" longer than I was because, I really just wanted another day or so of the hand-maiden stuff.  When it came right down to it though, I've been up doing stuff, taking medicine, alternating with rest for several days.  It feels like horrible karma to take advantage of a caregiver for even an afternoon.  Folks who care for the sick are often changed by it psychologically and I'd not want that on my conscience.

Enrolled as a Wellness Advocate for doTerra essential oils.  I've done this really as just a partnership for my little pendants.  That way I can sell folks little samples of different oils and they don't have to dish out like $30 for a small bottle of oil, just to find out that it is not the one which works for them, or their family.  The direction that our health care system is heading frankly scares me and I want to keep as many chemicals as possible outside of my house and body.  The scents of nature are powerful.  Last night, I found that my mood changed about an hour before bed.  I couldn't figure out why, either.  Nothing had happened to cause it yet, I was in a bit of a funk.  I used two drops of a blend called Elevation on the insides of my wrists, like I would for perfume.  It smelled very good at the time I applied it.  But as it was absorbed by the pores of my skin and my personal chemistry mixed with it, IT   SMELLED   DELICIOUS.   Like, I wanted to just lick my arms, delicious.   It is hard to be in a funk when you think you are completely YUMMY.

A few folks in my world are struggling with symptoms of illness these days, and I witness some of these and hear about others.  It is truly a helpless feeling to watch loved ones suffer.  Growth is hard.  That's why when kids have growing feelings, those are called pains.  I think most all illnesses which are chronic (and these I'm referring to are) must be grieved, like any important loss.  And one of the steps of grieving is acceptance which is sometimes confused with resignation.  Resignation to me has the ring of surrender.  I am laying down now.  Just go on and run me over.  But acceptance, that means, okay, I get that things will be different, but, I'm not going to stop living.  I will figure out how to live differently.  I can still go on a cruise to Alaska, even though I have to do it differently.  I can still hope to see the Grand Canyon someday.  I can still offer compassion to others.

This is from my Minute Meditations and it struck me as so so true today that I want to share it.

In this life you now perceive great value and beauty in things that formerly you turned away from: poverty, suffering, even illness. You now understand that in the poor and lonely you behold the face of Christ. And in difficulties such as illness you see the means for you to do as Christ bade you: to take up your cross and follow him all the way to heaven.

I was one of those people who perceived value in beauty.  In abundance.  Now, I am the other kind of person.  Frankly, I wouldn't change it for anything.  It so delights me that I have tears.

In deep gratitude that I know myself.  

Have happy, happy days.

New venture

Officially launching the FaceBook site for my essential oil terra cotta pendants today.   Uploaded pics just last Friday and have sold 6 since then.  So, now I have photos of them each, and cards, the whole deal. Gratitude for the mental clarity to take this creativity into something that will at least pay for itself.  (Unlike my yarn art.)  Feel pretty delighted that it is raining now, and has several times this week and my symptoms are minimal.  Yes, that's what I said.  Minimal.  I can walk independently, speak coherently, all the stuff I sometimes lose.  So, I am trying to just enjoy it and not really focus on whatever it is I'm doing that's right.  After all, it could be due to nothing I have acted on at all.

Have happy days!

Since last time

Well, its been a bit since I've written.  I've had a few realizations since then.  Also, my symptoms weren't that bothersome for some time until about 3 days ago, so I used the time to do things at sites other than my computer.

For a bit, I crocheted since I was working on a charity drive and our goal was to do as many things as possible for whatever charity we personally chose.  I sent 12 hats and a dozen or so bracelets and necklaces to the Battered Women's Foundation of Fort Worth.  Then I got started on slippers for my sister and a hat & scarf set for my sister-in-law.  I love to work with my yarn.  I especially love when I find a pattern with a stitch that is soothing rhythmically and doesn't require a lot of counting.  I haven't been crocheting for very long and have only had individual instruction once so, I think I'm quite good, considering that.  But, when I have to carefully count specific stitches and gauge is critical, that's when mistakes are made, especially by folks like me.  Let's just say that one of Moni's slippers wasn't exactly the same color throughout.  Very, very, super close, but not exactly.  So, I call it a one-of-a-kind uniquely crafted piece of fiber art made for her very own foot.  (It's a handy thing being good with words.)  I am trying to improve, but not in any goal oriented way.  I can produce better results if it is all I'm doing but, then the book has to be turned off.  I can do it to music of course but, I'm sort of addicted to stories so, books are my thing to listen to.

Then I cooked for a bit and refilled my freezer with enough prepared stuff so that I don't scramble for dinner.  I know it shouldn't seem like I'd ever scramble for dinner since I'm home all day and can take my time choosing what to have or make but, not so.  I don't handle the last minute pressure of him being at home already and asking what's for dinner.  If I don't have an answer for that, it freaks me out a bit.  Also, I think because he doesn't cook, he doesn't get that raw meat (and really cooked meat, too) thawed in the microwave is less desirable than if it were left to thaw at room temperature.  Or, it is for me at least. Anyway, I usually take something out of the freezer and about half the time he doesn't feel like having that.  He never complains.  He is very happy eating something else.  But I am left feeling like I did it wrong.

Also, in the last month, I discovered I am an empath.  (I think there are people out there who would say this was "New Agey" and not a real thing, similar to psychics.)  It is not the same as being psychic.  It means the ability to feel is enhanced, which actually makes sense with my particular disability.  A friend brought this to my attention.  I had mixed feelings about this for a couple weeks and it was hard to come to terms with.  I didn't doubt it, when the books I got described types of people, I'm one of them.  There's no question.  So, the thing to do about it now is to make sure I continue to pay careful attention to whatever and whoever in the world has access to me, stimulation wise.  Its unhealthy for me to just wander through the world like most folks can.  I have to do things and go places with deliberation and purpose, or not go.  And, I have to choose folks to be in my world by their quality and peacefulness.  Since my world already involves so few people, it is likely that when my energy is depleted or changed for the negative, it is due mostly to environmental causes or to hanging on energies in the larger world around me, both of which I don't have control.  I will try to work on constructing any further mental barriers which could help separate me from feeling too much.

I spent some time making terra-cotta essential oil pendants this week.  It was a brand new creative endeavor for me and I LOVED it.  It was surprisingly delightful to sit there with clay and create.  I have posted them for sale.  The trouble is that if I do it for maybe 2 mornings about 2 hours each, I end up with a couple dozen pendants.  They are going to pile up quick at that rate.  Unless I find a Massage Envy who wants to put them on their front desks for sale, I doubt I will be able to get rid of them as quickly as I'd like to make them.

So, that's a quick catch up of life inside me.  I had some very down days not very long ago.  But, I floated up as the waters rose and felt better.  Had a couple lovely "play-dates" with other women friends, which I don't get to do often enough.  That was overdue.  And entirely enjoyed

I have decided I am going to try to describe my days differently to you.  Previously, I have used the words good and bad as descriptors for how I felt each day.  That's value based and sets me up for feeling some blame when all I did was wake up with severe symptoms.  So, I'm going to try out other things like "I'm not symptomatic today  or  Symptoms are severe now".  Maybe I could try "Life feels difficult today or A piece of cake day".  If I can remember to do that and retrain my thinking, I bet I would feel mentally better on days I'm currently calling "bad".   Today, by the way, is a difficult day so far.

Grateful today for plans to get away soon with a dear, dear loved one.  And deep gratitude that I floated back up when the waters rose.

Have happy, happy days.  They're the only days we get.  Don't waste them.

Definitely darker

There's a weird sort of thing that happens with my symptoms.  It is understandable from a birds-eye view but, I am not a bird.  I am having to live it.  So, its a bit harder to wrap my head around and sort of get the firm grip I need in order not to sink.  Here goes.  So, severe symptoms like pain, or migraine, or massive fatigue limit everything I do when they are present.  I adapt to include them into my life since I have no choice but to do so.  Part of adapting means that I am limited as to where I can go, the independent freedom to go when I want, and the energy of participating in some event.  So, as adaptation, I have learned not to make too many plans.  They are too frequently cancelled and/or changed.  I know that large groups of people cause an unhealthy reaction in my body, so again I avoid places where these groups might be.  I am extremely sensitive to certain vibrations and smells, and noises.  More things to avoid.  I don't drive because it isn't safe when I am symptomatic, and I live with unpredictable symptoms.   These changes make sense when symptoms are in place.  However, lately, the last few weeks, symptoms have not been overly bad.  I find myself left with what feels like a shell of a life.  Unfulfilled.  Lonely.  I have lost so much of what I'd want to be or do that when I can contribute or participate, the doors are already closed due to symptoms.  Even if I can go to a place where a lot of people are gathered, and it may be a bit noisy, maybe a neighborhood social event or whatever, I am left feeling like I don't belong there.  I've already adapted it out.  They don't know me and are so busy with the people they do know that they don't have time to get to know me.  It seems darker here, in this place.  This life that feels a bit like a shell today.  Sometimes, when I have been symptomatic, I can recall feeling like life is on hold.  Like I'm just waiting it out for "this" to pass so I can get back to..... to what?  Well, to doing nothing, really.  I did get some very sad news a couple days ago that I haven't yet processed emotionally, and certainly that has a component on how dark things look for me today.  My personal triangle remains the same.  If I'm not in pain, I am fatigued.  If I'm not fatigued, I have a migraine.  If I don't have a migraine, I'm depressed.  So, just finishing out the cycle with that last one.  It's a very scary one.  Physical pain is super easy for me to tolerate compared to pain in my heart and soul.  I know for SURE that that will pass.  This just feels bigger.  It feels like someone has taken a huge old moldy woolen blanket and thrown it over me and I can't find any corner to lift it and get light.  I'm trying to find an edge.  But, I keep dropping it or not being strong enough to lift it.  I have a lovely life.  Even as I type that, I find that I cannot smile about it.  Problem.  I have a spouse who is ideal for me and treasures me and, still not smiling at the monitor.  Problem.  I have the affection of two sweet animals.  Stone-faced as I sit here.  Problem.   I am grateful in theory for about a billion things in my world and yet, I feel empty.  I have adapted so many fulfilling things out of my life that now, when I am not fully symptomatic, I am left empty.  I am waiting for symptoms to come so I have something to do.  ??  Could that be possible?    What I have just written confuses me no end.  If you are confused as well, then I guess I made my point.  This whole thing is just so much NOT straightforward and I lack the mental energy necessary to connect the proposed dots.  I just do.  That is all.  Going to bed now.

Grateful for the bedtime yoga sequence that calms me and has improved my sleep cycle.    Thanks, Adriene.

Salt

I love it when there is a simple answer to a ginormous problem.  It feels miraculous.  Maybe as close to a miracle as I will experience in my life.  (Although I will admit that during my 14 month remission of symptoms, I felt overjoyed most of the time.)  Before I began taking one of the drugs prescribed to me in 2005 to see if it would help, I think I had maybe 4 migraines in my life.  I remember one very clearly.  It came on because of hunger.  I wasn't seeing a neurologist then and was otherwise healthy, so because it wasn't a ginormous problem, I didn't feel any real suffering from it.  Well, after the drug Neurontin, gabapentin is the generic equivalent, it is the second most debilitating of all my symptoms.  I was only on it for a one month trial.  During that one month, I had a migraine almost every day.  It was September and of the 30 days, at least 24 of them were spent in splitting pain so unbearable as to put me in bed, all day, each time.  I called the doctor twice during the month saying, this side effect is too much, and like all the other months, he asked me to please stay with it for at least one month.  He said that my body might still adjust, adapt to the medicine.  Hang in there, he said.  He was one of the more compassionate doctors I had.  He was working with me in trying to find a medicine, an anti-seizure medicine, that would calm my nerves down.  So, we tried several.  I would titrate up, stay on it for a month if I could, and then titrate back off.  I think I did that for eight months or so.  This was one of those experiments.  And it changed my life.  I think it changed the face of the condition I live in, as well.  Now, this is just me speaking but, I think it has rewired the trigger for migraines to be so low and easily sprung, that I get them so often and so severely that they are one of the worst culprits of my fibro.  It's interesting because I know others who have fibro and don't suffer migraines.  Also, I know some folks who swear by their Neurontin.  It's crazy how we are each a feat of miraculous, supreme, exquisite human engineering.  So, it has been one constant battle to stay on top of my headaches.  In fact, I find them more debilitating than the physical pain.  I am on two preventative medicines, and have one rescue med that works most of the time.  But, some don't get caught and I still am left with an axe in my head and, well, etc.....

I stumbled upon something online which has already helped 3 times in 2 days.  Salt.  Specifically, pink Himalayan sea salt.  That kind of sea salt has a very high concentration of some certain minerals not found anywhere else and, they cure a migraine headache.  To think that something as simple as a teaspoon of salt in water with lemon can be my medicine, it is a miraculous feat.  It makes full sense to me, because every time I feel one coming on, I crave salty Tostitos.  I must need it.  My lil' inside Marie knows it. A remedy exists that is not put out by a pharmeceutical laboratory, does not have any side effects, is not expensive, feels wholesome, on which I can now count.  So, I will continue to take my prevention meds.  But, when I feel one coming, I will get to my salt and water as fast as I can.  And now, I have a backup med if the salt doesn't work.  I have a plan A AND a plan B.  How sweet is that?  Super delicious yummo sweetness.

I have true gratitude that the internet and all its many "do this, it will cure you" sites guided me to one that WORKS.  Gratitude for a plan B.

True escape for three hours

Maybe I shouldn't call it escape.  Maybe it was more like a vacation.  My life is not a prison to return to, but an interesting and challenging combo of environments and blessings which can, without a break, feel overwhelming at times.  I went to my first ever knitting circle this morning.  These ladies meet once a month about half an hour away from me.  Here is one of the most lovely things about the group.  None of them knew me.  No one asked how I'd been feeling.  No one said, oh it must be the weather.  I used my cane and took things slow when I did need to walk but, there was no questioning whatsoever (it would have been rude, really) about my health.  I got to pretend to be a regular gal.  For 3 whole hours.  There were 13 of us at the end of the time and we all just chatted about books, movies, what projects we're working on, the traffic somewhere, home schooling, food, husbands, etc.  Normal things.  It was not a support group.  It was a group of friends.  They were happy to have me there.  It is the usual thing to leave the morning with more yarn than you arrived with.  Somehow, donations of yarn are made to the lady who runs the group and passed along to whomever, and I brought a huge bag of yarn home with me.  Ladies were throwing finished 9x9 squares across the table to each other for specific blankets.  Holding up the little pink sweaters for admiration.  Taking note of which author one of them said was fabulous and which TV show to look for on Netflix.  Also, I think I was the only one who didn't bring food to share.  There was a plethora of desserts, salads, coffees, fruits to be had.  The word fibromyalgia did not come up.  No one talked about any of their own problems.  Just shared the experience of enjoying the company of those who love to do what they do.

I don't know if I can accurately articulate just how badly I needed a vacation like this one today.  I needed to be around some people who don't know me.  Who take me in for just a bit socially, and who didn't delve deep enough that any bit of the conversation had to do with me or my health.  They asked me to return just based on what small parts of me I showed them.  I got to feel like a regular woman.  I have forgotten what that feels like.  Now that I'm home, I don't feel that way anymore as I cannot even walk from the car through the garage to the door without help.  Not regular help from my cane, either.  I had my cane and it was not anywhere near enough.  Tim had to bear most of my weight to get me inside to the wheelchair.  The small miracle of those 3 hours of normalcy is not lost on me.  I hold huge gratitude for it.

Grateful for the courage it took to reach out and put myself in such an unknown situation alone.  Grateful that it was worth the risk.  Grateful to Tim who taxis me around without complaint.  Grateful that I have something on my calendar to look forward to.  Grateful there is something on my calendar at all, besides doctors appointments.

A Beautiful Day For A Dog Walk

I went for a walk today.  With the dog.  Just me and the dog.  I understand that doesn't sound like much of an accomplishment but, it is one to me.  I'm proud.  I think it has been a year since I've done that.  I've experienced changes in my limitations that I've adapted to and but being alone anywhere in the world with said limitations is cause for acute awareness.  It is a beautiful day.  Maybe in the 50s or high 60s.  Clear blue sky.  Gorgeous.  A bit of breeze.  I miss being out in the sunshine.  I have missed walking Oscar but, he can still be tuggy and the instability was not a combo I was willing to take on.  So, this morning I became fed up with the overload of dog energy in the backyard in the form of barking that I just threw up my hands and said, ok, we're going.  I used his martingale collar which helps him with tugging but, I also put his backpack on him which we haven't used since he was 1, back in 2012.  I hoped, and it happened this way, that the unusual feeling of the backpack would be more puzzling to him than the confidence he'd have to pull away to smell things.  I started out from the house with 1 lb. in each side of the pack.  He really wouldn't abide that.  We got just a few houses away and I realized I would do more coaxing than walking so, we went back and I took the cans of beans out, leaving the backpack empty.  Upon this action, he was willing to walk.  Also, we walked in the street, which I usually don't do either.  If we are on the sidewalk, he tugs to smell things.  I know the pulling is a result of poor training but, that's where I'm at.

So, in gratitude for the courage to push my body and trust myself and my preparation, and for the peaceful quiet now that O is asleep, feeling fatigued but better than upon waking.

Have happy days!

Maybe inside the bell curve

Since my world these days is much quieter than it used to be, I have more space in my brain for thinking.  I have had the desire to write for several days, but not taken the effort to sit down and let myself actually do it.  Then, I began to wonder why I want to write.  Who is reading this stuff?  What does anybody care if I had to start taking magnesium again.  And it came to me while I was pureeing butternut squash for a pie that it is a craft.  A form of expression, like music and dance.  I have that creative, lets call it a gene, but  I don't know if that's anywhere near correct or not.  I have had the desire to express whatever is in me for as long as I can produce memories.  I have rocks which I colored with crayons when I was probably 5 or 6.  I have a ribbon I won at a local art show as a child.  Music was always all around me.  Always.  I can't remember ever going to the church we attended as a child and not singing in the choir with my parents and my brother.  I just do stuff, expressive stuff.  I guess the question now is what am I trying to express.  Well, isn't that the question of every life on this globe?  Today alone, there are probably 4 or 5 people in the homes of recently deceased loved ones who were also creative and expressive.  My money is on the fact that there are notebooks upon notebooks of writing.  Canvases stacked and paintbrushes all over.  Or guitars.  How many guitars does one person need, really?  If they were recorded for posterity's sake, we get to enjoy their gene too.  People with the gene do stuff because they are called to do it.  I am one of them.  I have no idea if anybody reads my words save one beloved aunt, one sibling, and one good friend.  Maybe they are the only 3 and maybe they even only do it occasionally.  But, in fact, I just write for me now.  It is the way I express that gene.  It is my outlet.  I don't really know how the quality of my "prose" measures against any real writer but, I do know this.  It flows naturally out of me as if it were carbon dioxide.    And it helps me to clear out something in my head akin to cobwebs, which is always feels nice.  Exactly like getting into a bed with clean sheets.

I sent some of my writing to an uncle who is not virtually connected to the world, hoping it would not be too depressing for him.  That last bit was specifically instructed by my mother.  I didn't sift through to find any depressing parts to omit.  It is what it is.  If some of it strikes him as sad, that's OK.  Let him express that feeling.  Why are we trying to protect other people from feeling stuff that's hard?  That's the only time we grow, when we burst through something that was difficult to get through.  Otherwise, we're surfing along in our life journey, and it's only in the stumbling that we get our scabby knees and scars of wisdom.

My plan to omit extraneous chemicals in the form of all those vitamins and supplements has worked.  Also, I have very minimal exposure time to audio during my day.  I am not feeling so foggy as I had been and during the last month I didn't have any back sliding into it.  I let myself listen to some audio book while I'm washing dishes only or while I'm falling asleep.  No other times.  I have not turned the morning news on for 3 weeks or more.  When I sit down to watch something recorded on TV, I watch it and do nothing else.  Then, I turn it off.  I really only spend my mornings alone.  Tim goes into work each day before 5am, I get up about 8 am.  I do household things as much as I can in that time, bathe, cook, at 11:30 or 12, I've got to eat again.  After lunch, I go nap.  Skipping naps is a mistake I have made more than once and I am determined to finally learn the lesson. Nap from 12-3pm  So, he comes home from his workday while I am napping and I wake up to him here, ready and waiting to share his day with me.  So, my afternoons and evenings, I am not alone.  Which is lovely.  But, the affect of omitting others voices from my home, no TV on in the background or music, does leave me feeling a bit lonelier in my mornings.  Maybe I'm still getting used to it.

No one could write a list of blessings longer than mine.  Truly, I believe that.  And, this journey and my scabby knees have shaped me into who I am, and she rocks, by the way.  I function, in the few hours that I am awake and out of my bed, a little bit within the normal section of the bell curve currently.  Now, if I were to decrease the sleep to what is within the bell curve for others, the house of cards would surely fall.  But, just having days like today, where there was nothing that I felt I suffered from, it feels like there may just be some magic around us.

Have happy days!

~M  

PS:  You know who you are; I used poor judgement in my actions last week and I will not make the mistake again.  I love you and the others.

Decisions, decisions

January 11, 2015

Some of you who know me well, will agree that I am quite decisive.  I rarely debate something in my head or with another person once I already have a plan of action I want to take.  Now, if I am without any plan, I will seek advice.  But, this decisiveness and call to immediate action has been with me for as long as I know.  Also, I rarely second guess myself.  If things went wrong, well, they went wrong and if I'm to blame then I apologize and try to correct what I can correct and move back into the present moment.

Recently, the decisiveness went wrong.  On Monday, I had such a completely clueless day that it frightened me.  I became convinced that I did not want to live in such a fog because I might indeed accidentally hurt myself, or burn my house down, or whatever.  In an effort at action in the face of "battle" I decided abruptly to stop taking everything I take which is not prescribed to me by my doctors.  That amounts to an entire hand full of vitamins and supplements.  I took only my meds.  Well, the fog has cleared in my head.  Although, I have no way to know if that is related to the fact.....

had to stop and am picking up later....

if it is related to the extra chemicals in the supplements being gone or if the extraneous stimulating sounds  are the key but, probably it is come combo of the two.  I am having many more clear headed days now than I had when I first began this entry.

Grateful for courage to decide.  And the ability to take it on the chin when the decision goes badly.

After the nap but, still deep in the fog

This entry will be an example of how deep in fog I am today.  I think I may be able to disgise it since I'm going to type slow.  Also, leaving spelling problems in.  I'm from the age when you spelled it right the first time and didn't rely on spell check.  Anyway, for some reason, my fibro fog is justy super thick today.  I mean, I could scoop it out like meringue in front of me.  Visibility is nothing, or maybe like 1 foot.  Tim just said to me "what did you do today/"  I replied "I fed them, and I did a couple loads of laundry and I did the dishes.  And I fed myself.  I nd I spent an awful lot of time wondering what to do.  It is so nice that he gets what that means.

Something I sort of discovered is thatI do have muscle memory in my arms, hands, and my hamstrings.  Here is how I know.  If I sit in my wheelchair and wheel myself to the other room I'm able to retain the thought of why I'm going there and what to do about it.  The action  of my arms and hands having something mechanical to do and the lack of risk on the part of my legs, I don't know why, but, I have noticed the effect 3 separate times.  If I walk into a room, its like I've nefer been there, but if I wheel in, that is so much easier on my mind that not only can I remember the reason, I also can get some steps done toward accomplishing the thing itself, if not the whole thing.  Its the memories in my muscles.  It has to be.  My mind is just addled.  Really.  So, I used to used my chair about 1/4 of the time, now I use it 3/4 of the time.  I can't think at all when I'm onmy feet.  Also, had another 2 events or incidenceds, whichever you like to call it where I fall/faint/go down today.  And the 4 that happened yesterday, T was home.  Two of them he was right beside me.  Today, I just paid attention to the precursor, which is a tinghling in my knees, and then thats it, legs no longer support weight and vision is grey on the way to black.

Very frustrating.
Closing with gratitude, I did get to napo for an hour and a half before O woke me.  I have a warm safe, place to nap, and provision for me to be so comfortable as I lnavigate my dense fog.  Also, gratitude that I don't try anything stupid like fire, or swimming, or lifting things, you know.  All the things that would put me into actual trouble.  My angels up there at least keeping me on the main highway.
Have happy days my friends.  I hope this non-corrected copy doesn't offend any.  It is how I think even now after my brain is at its freshest today.  Porridge> Oatmeal>

Two thoughts: A metaphor and a precaution

I have thought of two things I wanted to share here with you but, right now I can only remember one, and that is because in the middle of the night, I could jot it down with my snazzy stylus on my smart phone.  How fun is that?  Really.  Oh, and I just got the other one back.  First music.  Then canes.

Probably lots of people before me have made this metaphor about pain and music or pain and sound, in general.  If you are in the presence of someone in pain, it is extremely hard to understand what they are feeling.  They cannot adequately communicate it.  They just can't.  Even if they had the incredible vocabulary to put it into words, the pain itself slams shut the file cabinet in the brain marked words and all they are left with is generalizations like aching, stabbing, burning.  I say this.  Think of pain as a symphony of instruments, hoping to not have one playing at the same time as another.  I have a low sort of thrumming pain in my arms right now which I imagine is what a very low note on a clarinet or flute sounds like.  Sort of melancholy.  My fingers, however, sound like a piccolo at its highest register.  In fact, I'm sure I would hurt less if they were gone.  And music is so fluid, like the nervous system is.  I could be at a medium level 5-6 pain which is burning but, if I say, imagine a saxophone blues number on high speed.  That gives a different metaphor.  Here are the sounds you don't want to hear.  Trumpets.  If the trumpets are blowing, I am generally unable to even spell my name.  I have been known to not understand what the word "left" meant.  Those damn trumpets.  And sometimes, trumpets play along with other instruments, just suddenly, for a measure or two, to keep me on my toes, there will be say 20 seconds of trumpets while I am just coping with my saxophone stuff.  The sciatic area would be trombones or tubas.  I think head pain is the absolute worst.  Of all the pain I have endured, migraine is the most debilitating.  Frankly, the only thing it could be is the snare drum with cymbals.  And being played rock style.  Like the drums are the highlight and everything else has gone quiet so every single sound wave of every hit travels into my brain blinding me with its sound. A deep depression is the sound of a wailing unending cello.  A heartbreaking sound.

The fibromyalgia pain syndrome feels very much like a song, really.  A never-ending song.  Yes, there are rests when things are silent, but, there are times when most of the instruments are playing their parts and doing so very well.  At those times, I can not get up and leave the symphony hall.  It is IN me.  I have no escape from it except that which I create through mindfulness, laughter, and faith.  Yes, with clarinets I can fall asleep.  Also with flutes.  But if a trumpet is playing, how, answer me that, how could I fall asleep?    Then in the morning, I have just a few notes off the xylophone or something or a very light brush of a cymbal.  Anyway, I am sure I'm not the first to denote this metaphor but, in case any of you wonder how we describe pain so differently, it is because it IS so different.  The Canon in D Minor, my favorite work ever, does not sound or feel like John Denver's Annie's Song and that does not feel or sound like something by Ozzy Osborne.

So, my second thing is that I have an issue I don't understand which is different about me from some others in my similar situation.  I gladly and willingly walk with a cane.  I almost always use a quad cane now instead of just the single.  I bought one the day I woke up with these symptoms and it has been part of my life since.  (Yes, there was once a remission at which time it was unnecessary.)  Also, I own 2 wheelchairs.  One lives in my house, one lives in our car.  Now I don't think of myself as having a fear of falling because I believe that these measures are the practical and prudent actions I can take to protect myself.  So, I move about at my pace, carefully and anybody who is bothered by my slowness should say a prayer of thanksgiving that they can walk without any pain.  But, many friends I have, do not use a cane.  I don't understand this.  I'm unsure if the condition is indeed affecting me in a more severe way than in others I know.  One thing medical science does know for sure about fibro is that no two of us are alike.  I am disabled by it and have been since its sudden onset on 3/15/05.Its possible that it may be vanity or stubbornness on their part.  Also, I have done much volunteer work in nursing homes and I know the truth is that generally, if people who cannot be very active fall and break a large bone or joint, they do get sent to a rehab/nursing home, if they can't be cared for in their own house.  Sometimes that is the first step in a long line of steps that keeps them in that nursing home for the remainder of their days.  They can be bleak places.  I want to remain as independent as I can possibly be for as long as I can be.  And sometimes it breaks my heart that I am dependent.  It is just grievous to need somebody else to do a small household activity for me.  But, also, it is what it is.  So, someday, I may need to face that kind of situation.  I want to have any stubbornness or vanity well behind me and get on with the business of living each day happily.  Further, why would I risk twisting an ankle or tearing a knee ligament and letting the trumpets play more and louder.  Foolishness, I say.

Grateful today for blogging right before lunch which includes:  This house, which is warm with gas, and comfortable with furniture.  It's feeling of safety from the alarm and the dog.  Clarity of my mind since, right now, only the piccolo in my fingers has a part.  The food I'm about to go choose for my lunch today and what I will take out for dinner tonight.  The bathtub I can fill with hot water and the soaps and shampoos of my choosing for use on my skin.  Every single bit of it.  Pure gratitude.  And for my faith which never wavers.  And my friends and family who buoy me in every storm.