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.