Tuesday, October 27, 2015

Please stop...

Dear World,

Please stop asking me to stand.


Today, I went to fetch some groceries.  Just a week or so ago (the last prescription run), I remembered that deli meat is high in sodium and realized that would be good for me to eat.  I had some Oscar Meyer meat, but I wanted fresh sliced from the deli counter because that is ever so much more tasty.  I also have been waiting to buy some Yukon potatoes for a curry recipe and Wal-Mart did not have any the last two times I went, so I went to the real grocery store where there are more produce options.

At the deli counter, there were three customers and four staff.  However, one of the staff was ... puttering around.  As the wait dragged on and on, I sat down on the floor because I simply cannot stand for long.  But, boy, does my sitting on the floor make others uncomfortable.  Shoppers kept staring at me and staff came over to try and get me to stand.  Well, if there was an electronic shopping cart, I would have used it.  There was not.  So, I sat.  After 30 minutes, I gave up and left without my deli meat.  My fatigue was increasing and I had more groceries to fetch.

I posted about it on the Facebook support group and, much to my dismay, received comments more about why I should not sit rather than supporting me for doing what is needful to prevent fainting.

Get a cane with a seat
not sturdy enough for me
my weight is a bit too high for them

Get a walker with a seat
I don't maneuver well with them.
I don't want to lift one in and out of a shopping cart.

Bring a pad with you so you are not a dirty floor.
I don't want to have to carry yet another item.
Washing machines are great for cleaning dirty clothes.

I don't like to make others uncomfortable.
Why should my sitting on the floor make others uncomfortable?
I am not here to make others comfortable with my condition.

I don't like to stand out.
I no longer care about standing out.
I have more important things to care about.

Gosh!  I would have thought there would be some championing of my post.  I don't need to be fixed!  I am not so stupid as to have failed to consider other assistive walking devices.  Sitting on the floor is easiest for me!!

There are simply too many places in this world where one must wait on line without any thought about those who have difficulty standing.  At both the downtown venue and the college venue for the symphony, even though there are circular drives for drop-offs and even though the patronage is skewed toward the elderly and disabled, there is not one place to sit at either venue while waiting for the very long line of cars picking up folk to move along.  The next time you are out and about, think about how much standing you do between leaving your house and coming back home.

One person did suggest that we have a Dysautonomia Sit-In where folk can post selfies sitting on floors in solidarity.  I sort of liked that idea, even though I am not much into selfies.  

There is no shame in sitting on the floor.  There is no shame in the adjustments you have to make living with chronic illness.  There is no shame in being different from others.


Monday, October 26, 2015

Culinary therapy...

I was a bit ... bothered ... this afternoon about my appointment tomorrow, so I decided to practice some culinary therapy.  A while ago, I saw a recipe for cauliflower "breadsticks" and was intrigued by the idea even though the thought of them seemed a bit disgusting to me.

While I normally do not mess with a recipe without trying it first as written, I did not want to take any chances at wasting the cheese with less-than-tasty result.  So, I blatantly tweaked the recipe from the outset.

The Herbed Vegetable Sticks (I just had to change the name since these are in no way "bread") turned out far better than I thought they would.  I am betting the fresh herbs and garlic had something to do with that.

Since I do not own a food processor and was concerned about pulsing an entire cauliflower in my mini-food prep processor, I decided to start with Green Giant Fresh® Cauliflower Crumbles that I spotted in the store.  I was worried a bit about having too much egg white since I think 16 ounces of chopped cauliflower might be less that what a head of cauliflower might be once chopped, but the recipe turned out fine.  Perhaps there is a bit of proportion leeway in using egg whites.

Being a fresh herb novice, I really do not know how much to use most of the time I substitute fresh herbs for dried.  I think that my little pile of chopped herbs ended up being about 3 tablespoons worth. I tried to be specific about how much I used of each type in the recipe.  It seems like I basically end up with a heaping handful of fresh herbs no matter what recipe I am following.

I would definitely serve these to company, if only for their conversation value.  I do not believe I would mention, prior to serving, that the main ingredient was cauliflower.  After all, the melted cheese made them pretty attractive.

All in all, I liked the challenge of making something that is so completely outside my wheelhouse.

While I was cooking, I left the back door open to try and persuade Amos to tend to his major business.  Firewood Man was going to surprise me with the caulk and prep work so that we could finally paint the interior of the porch roof and the exterior horizontal strip of house red paint.  I practically jumped out of my skin when I turned around and he was standing in the open door.

[I confess I might have called him once or 20 times in the past few weeks since it is getting a bit late for painting.]

Tim thought I was nuts for making "breadsticks" from cauliflower.  I admit I agreed with him and hesitated before adding the cheese.  After all, who in her right might would want to waste cheese?  The smell of cauliflower was off-putting for me and rather worrisome, but I did chow down on four of the sticks (after girding my loins to gear up enough courage to take a bite) before putting the rest in the refrigerator.  There is a hint of cauliflower aftertaste that you wouldn't have with regular breadsticks, but not enough to make them un-tasty.

Not being a bread maker, I am untutored in the theories behind type of cooking trays/pans to use with bread items.  Since the sticks stuck to the baking stone that I used, the bottoms were then soft.  I tried to compensate by putting them back into the oven for two minutes after transferring them to a cooling rack.  Next time, I think I might try a metal pan.  Perhaps even a greased one.  For I believe these would be better if the bottoms were a bit crispy.

Feeling rather sanctimonious for eating something made from cauliflower, I toyed with the idea of having a second slice of the Apple Cider Donut Cake.  It thaws and reheats just wonderfully.  However, Becky encouraged me to stick with self discipline with her response:  "Desert your ideas about a second dessert!"

My funny friend!

Sunday, October 25, 2015


I was watching a talk Michael Card was giving in which he began by adamantly and unabashedly proclaiming that he believes in the perfection of Jesus. Every word that Jesus spoke is perfect. And where Jesus remains silent, His silence, too, is perfect. I wanted to shout, "I do, too!" even though alone in the living room staring at a screen. 

Sometimes ... well ... I think there is a rather sad absence of appreciating the perfection of the Living Word as a whole.  I mean, a friend pointed out that she hears about Jesus being the perfect sacrifice, but all of Him, all of His existence as God and as God Incarnate is perfect. 

And I think this lack of appreciation for the perfection of the Word of God is, at least in part, the reason for a rather distressing lack of conviction in the sufficiency of the Word of God amongst Christians. We fumble around for our own words to banish despair or bathe wounds or assuage doubts instead of simply sharing/speaking the Word of God to others. 

Would that it were more lessonings on faith begin with adamant and unabashed proclamation of the perfection of Jesus.

Saturday, October 24, 2015

She used to be mine...

It's not what I asked for
Sometimes life just slips in through a back door
And carves out a person
And makes you believe it's all true
And now I've got you
And you're not what I asked for
If I'm honest I know I would give it all back
For a chance to start over
And rewrite an ending or two
For the girl that I knew

It's not simple to say
That most days I don't recognize me
That these shoes and this apron
That place and it's patrons
Have taken more than I gave them
It's not easy to know
I'm not anything like I used to be
Although it's true
I was never attention's sweet center
I still remember that girl

She's imperfect but she tries
She is good but she lies
She is hard on herself
She is broken and won't ask for help
She is messy but she's kind
She is lonely most of the time
She is all of this mixed up
And baked in a beautiful pie
She is gone but she used to be mine

It's not what I asked for
Sometimes life just slips in through a back door
And carves out a person
And makes you believe it's all true
And now I've got you
And you're not what I asked for
If I'm honest I know I would give it all back
For a chance to start over
And rewrite an ending or two
For the girl that I knew

Who'll be reckless just enough
Who'll get hurt but
Who learns how to toughen up when she's bruised
And gets used by a man who can't love
And then she'll get stuck and be scared
Of the life that's inside her
Growing stronger each day
'Til it finally reminds her
To fight just a little
To bring back the fire in her eyes
That's been gone but it used to be mine

Used to be mine
She is messy but she's kind
She is lonely most of the time
She is all of this mixed up and baked in a beautiful pie
She is gone but she used to be mine

Thursday, October 22, 2015

Culinary coaching...

Emily showed me great mercy today by serving as my culinary coach for my first attempt at a real cake (although I have made a boiled one which is mostly dump, cook, and bake).  I found the recipe rather inadequate and highly stressful, but Emily brought me through the bake like a champ!

This is an Apple Cider Donut Cake.

It is incredibly tasty!

However, it makes quite a mess in your kitchen!!

The part of the recipe I found lacking is that two bits leave you with leftovers!  Who has leftovers in a recipe???????  The first bit is where you peel, core, and chop apples, cook them in apple cider, and then puree the mixture.  You end up with just over double what you need.  I think I would halve this part of the recipe.  When I realized how much was left over, I decided to freeze it for the next time I make this cake.

The other part of the recipe that is too much is the cinnamon topping. I can only surmise it is so much because one ingredient is 1/8 teaspoon and how could you take that down further??  Seriously, I think the leftover part of the recipe should have been noted!

I called Emily in a panic, looking at all that apple mixture, most certain that I had done something wrong and did not want to proceed further lest I waste ingredients, especially the butter.  Emily was aware of the complex nature of the recipe and proffered that perhaps the idea of cooking down just one apple was a bit too small for a pan.  On her way to take her daughter to dance class, Emily encouraged me to plow ahead and coached me through the rest of the recipe.  I seriously would have not make it without her act of mercy!!

My stomach is glad that she did!

What meant the most to me is that Emily understood, without me even mentioning it, that I was cooking, that I was baking as a means of girding my loins for the appointment tomorrow.  The one I don't want to do.  The one I am not sure I will do.  The one that if I do not do I will not have refills of my hormones which I cannot be without.  A true Catch-22.  Dangerous to do and dangerous not to do.

After the cake was cooled, I sliced up the rest of it and put it in the freezer downstairs.  It is in the Rubbermaid cake container that I have owned for 26 years.  Nothing like a quality product!!  I froze it rather quickly because I really wanted another slice ... or two or three.  After all, four is my favorite number....

I have yet to clean the dishes, even though I need to try and shower and crawl into bed since I have to be up earlier than normal tomorrow and drive across Timbuktu for my appointment.  They are all in the sink and the counters and stove top are cleaned, but I do not want to leave them until tomorrow. I think that would be too discouraging a sight coming downstairs in the morning.

Speaking of encouraging sights ... I have made my bed for over a week now.  It really does cheer my weary heart when I stumbled my way up to bed and find visual rest in my bedroom.  Sometimes I do so when I awake, but mostly it has been after I have been up for a while.

This is sooooo perfect!  It really is wretched to faint when you get out of bed.  Getting up, transitioning to being upright instead of supine is rather difficult, so who wants to add the additional labor of making a bed and straightening a room?  Not me.  By waiting until after I am adjusted to the strain of being vertical the labor is less exhausting and I still achieve the blessing of nighttime bedroom visual rest.

Perhaps, now that I have posted such scrumptious photos, I will get Amos to tend to his business and then I will tend to mine.  Each time I am in the kitchen laboring, Amos camps out on his resting pad in there. I am so very, very, very thankful to Becky for providing a safe space for my Fluffnutter and constant company for me!

Tuesday, October 20, 2015

A good steward...

With Medicare costs rising so very high, although I should not have to pay the increase in premiums, I am even more committed to working on trying to reduce my living to 80% of the disability payment in anticipation of the fund going insolvent just about a year from now.  I work and work and work on saving and on cutting expenses.

However, I do feel as if all I have done of late is acquire things.  It is a bit disconcerting for me.

For example, I was a bit ashamed at wearing a hoodie to the chamber performance of the symphony, even if I did have a pretty flowy skirt on as well.  It struck me that if I wore a jean jacket with my flowy skirts, I could be comfortable and a bit more ... well ... maybe, possibly stylish.  I used to own a jean jacket, but it somehow got lost over the years.  Given that I am still wearing clothes from over thirty years ago, that is a bit surprising.  So, I went to eBay to see what I could find.  In short order, I bought a men's Levi jean jacket in pristine condition for a mere $10.  Men's so that it would not constrict my always tender abdomen.

I wore it to counseling today, and then afterwards to fetch prescriptions (and a few groceries).  Whilst at Target, six different folk commented on my outfit.  I guess I was right about the lack of a hoodie being a better choice.

I have also been making some purchases to get ready for having an additional seven people in the house this winter, such as replacing the bedding for the beds in the solarium.  As an adult, nearly all of the items in my kitchen have been hand-me-downs from my grandmother and my mother.  The first real purchase of my own was still a joint one, between my mother and my brother and myself ... spending several years building up my Henkel's knife collection.  [They are 20 years old and still amaze me with their precision.]

My dishes set is many years old, some mustard dishes that I found at Walmart.  My glasses set are a bit newer, a set I found at Target.  Originally, I bought a set of 12 of both, but I found each, a long while later, on clearance.  So I have dishwater for 16.

When I started cooking nearly two years ago to help reduce the digestive problems I had from processed foods due to the autonomic malfunction of my innards, I finally bought cookware, only Amazon ended up crediting me for the set.  I have really enjoyed the pots and pans, although it absolutely amazes me, still, that I have new ones to use, instead of pots many, many decades old.  I do still use my grandmother's aluminum pans for anything that I am not cooking on the stoneware.  I wish I had a daughter to pass them down to ... when the time comes.

My flatware is my grandmother's.  I do not remember why I just have part of it.  I have just 5 place settings, plus many strays.  I even have a knife that got left at my house somewhere along the way.  Being low on flatware, I never minded the odd one out.  Since I cannot use metal forks or spoons without solely tasting the metal, my use of plastic ones means that, for the most part, the lack of flatware isn't really a problem.  It does mean that when anyone is here, I have to do a lot of flatware hand washing.  With the hoard descending upon me, one of my purchase goals was to get some flatware.

My issue with flatware is that the quality stuff is sooooooo very expensive.  The economical stuff, even in department stores, just is not made well.  Every time in the past I have though about buying a set, I always end up dissatisfied.  My grandmother's flatware from the sixties, Japanese, is rather lovely stuff to me.  I have looked for more of it for years, but have never found it.  I have found other Cosmos patterns, but not hers.

Since inviting everyone here this past May, I started searching for a pattern that I would like on eBay, limiting my search to vintage Japanese flatware.  Finally ... finally ... I found a pattern that I thought might work.  It is not a Cosmos one, but is Cortina Fleur de Lis.  The reason that it stood out to me is that part of our family history is from France and my mother has a pair of stained glass windows (moved from house to house to house) with a fleur de lis pattern.

After pricing things for a few weeks, I bit the bullet and bought two sets of 8 place settings (with two butter knives and one sugar spoon added in to one batch), thrilled that I could get all of the place settings I wanted in just two purchases.  So, my dishware, flatware, and glassware all match in number.  The lighting is a bit odd, so it looks like I chose the black accented ones, but I chose the plain ones.  I have had them since Friday and I am still amazed whenever I open the flatware drawer and see such abundance.  No more hand washing forks, knives, and spoons for me!!

I feel really good about the purchase, on one hand.  I like that I am using flatware that others might have thrown away.  I believe the cost was rather great, especially for the quality.  And it ... means something ... to me to have a pattern that harkens a bit of family history.  However, with every purchase I have made in the past year, I worry ... greatly ... about trying to live on 80% of disability.  Translate that:  I feel much financial guilt.

Am I being a good steward?
Am I leveraging the resources I have been given to the best degree possible?
Am I limiting any "want" purchases to my best ability?
Have I sold as much as I possibly could of the things that I am not actively using or need?
Am I pursing every economy of scale possible?
Am I saving as much as possible?
Am I re-evaluating my budget in a timely manner?


You know, I very much wish to purchase some vanilla paste for cooking.  However, I think it is the least economical item thus far in my cooking endeavors.  Does someone on such a tight budget have any business buying vanilla paste???  Oh, how the financial questions haunt me!

But I feel so empowered by my FROG ring and my GREEN flower headband.  I really enjoyed wearing the jean jacket and can think of all sorts of combinations with my flowy skirts and tops.  The NutriBullet has been such a blessing, with more than the smoothies.  The sight of the flatware brings such relief thinking of the upcoming visit.  And, frankly, even if I didn't have folk coming, I am glad that the old bedding has been replaced.  The sheets on the beds date back from when I was in junior high school, and the damage to the spreads did bother me (especially with Amos working on pulling out the batting).  And, frankly, Amos is so enamored with his latest baby, even if he already had ... well, more than I care to admit.

For once, my forgetting is working in my favor; I cannot remember my other acquisitions this year!


The other day, I was having a rather firm discussion with Amos about cutting his nails when I realized that the nail clippers I was using are over 19 years old.  Surely it would not be extravagant to purchase another pair or to get a fresh blade (if that was possible), right?  Why agonize over such a small purchase?


You know ... Amos was not economical.  But, boy, has he ever turned out to be an incredible investment!

Monday, October 19, 2015

Would that it were...

I like to think the PTSD is better.  It is.  But it is also not.  Take, for instance, the near melt-down in Lowe's, the melt-down at the surgeon's office, the panic at the sight of the armed officers on my back porch, and the melt-down after being touched at the symphony.

"No, really, I'm better," I insist.

Tomorrow is counseling and fetching of prescriptions.  By my newly recommitted vow of not overdoing it, I should just do one of those things, but I have been putting off picking up prescriptions for over a week.  I need them.  Getting dressed is at least half the battle, so I am going to Target either fore or aft my appointment.  Maybe fore would be best.

I was thinking about the exam and procedure I have on Friday ... the one I've been dreading for ... well ... two years now??  I just am not the sort of person who can tolerate things inside her.  My homework for my next counseling session has been to identify what I am feeling at such times.  I don't know.  I really don't ... apart from abject and overwhelming shame.  The only word off the feelings chart that seems remotely a possibility is: revulsion.  SIGH.

I was thinking about my appointment because I was thinking about how afraid I am whenever the counselor gets near me.  I thought I was hiding it, but when I mentioned how ... distracting ... it was for me when she leans forward in her chair, she called my bluff and told me she knows I am afraid of her.

Last week, I dropped something.  Automatically, she reached down to pick it up so I wouldn't have to do so, given how dizzy that would make me.  I recoiled as she drew near.  Then, I sat in shame for being so weak as to be afraid of someone I actually like and the absolute BEST counselor I have ever seen.

Shame paralyzes me.
Shame clings to me.
Shame colors everything else in my life.

Fear does, too.  The hyper-vigilance I try to hide.  My utter love for the airing porch because up there I can be outside and feel safe.  Fear of being touched is really fear of my reaction, of being felled by shame.

Gosh, I really, really, really do not like who I am.  Would that it were I could be better.

I can be.  Or at least I hope.  That is why I decided to gird my loins enough to try counseling again, even knowing that free counseling means a revolving door of counselors, which makes it rather difficult to establish the relationship needed for healing.

But in another way I will not be better.  I will always be ill (excepting a miracle).  The PTSD will always be there.  And the past cannot be changed.

Would that it were there existed a medication for shame, a procedure for its excision as you would with a tumor.

Saturday, October 17, 2015

Annoyance update...

Electrician Man is so good to me that I just don't deserve it!

His phone died today, and he didn't know it.  After charging it, he just saw my text and texted me back troubleshooting ideas.  Then he had me go to the basement, remove the panel, and call him so that he could hear the unit and I could describe what I saw when it tried to come on.  After some fancy over-the-phone tutorial-ing, Electrician Man guided me to the likely problem area. I found a disconnected wire that goes to the heat sensor.  Without that safety feature working, the unit automatically kicks off to prevent overheating and a fire.  I re-connected the wire and voila!  I HAVE HEAT!

How many service contractors would call just before 11:00 PM on a Saturday night to try and troubleshoot an HVAC problem??  I am (and have been for nearly five years) been every so blessed by Ben and his dedication to his vocation.

I repeat:  I HAVE HEAT!!!!

Excuse me, now, whilst I go sit atop the vent on the kitchen floor.  I plan to make a tent with a blanket and warm myself up.  I have been shivering and shaking all day!!


My heat is not coming on.

The HVAC unit is four years old and should be just fine.  That's what buying a new unit is for ... lower costs and no worries.  Four times now, the coils have frozen over.  As a "fix" for this, since nothing appears wrong, is to keep the freon a pound heavier than it would normally have.  That has mostly worked.  The heat, however, has not yet had a problem.  Until now.  Now ... nothing.  It is 51 degrees in my house.  Saturday.  And no hope of getting Electrician Man out here until next week some time.  SIGH.

I am rather annoyed.

Of course, with my house repair fund, I do have some money accumulated to address whatever is wrong.  Since my switch early their year to adding a small monthly amount for the house, too, I now have $119.16 in savings and interests.  The perverse part of me, however, objects to the fact that the those funds are for old things in my house, such as the dryer.  All the appliances and mechanicals are new since moving here.  Therefore, in my mind, none of those things should be in need of repair.  I guess I am being a petulant homeowner.  SIGH.

I did have my first fire last night.  The first one of the season is always more difficult than the rest to keep lit because of the lack of an ash bed.  If I owned an ash bucket, I would keep ash from the previous year, but during the spring and summer, I have to keep the fireplace clean because sometimes a bit of rain comes down the chimney.  The way I see it, I don't need to worry about the interior of the chimney because by the fall, there is a pile of black ... stuff ... that's been washed down by rain.  I have asked Firewood Man to put a cap on the chimney, but he really, really, really hates heights.  I think doing so is the last thing on his Myrtle List.  I do not mind.

Right now, I am huddled beneath five blankets with Amos, only my arms peaking out to peck on the keyboard for a short while so that I can do a bit of homeowner rant.  I might build a fire later, but I do feel the need for a nap ... or two ... or three.  We have both already had supper, so we can snooze away the evening.

I am still exhausted.

I did, however, bring the porch plants inside.  Two of them need repotting, so they are still sitting on the deacon's bench.  The rest are watered and are in the solarium, save for the hanging baskets.

Here they are ... before and after.  This will be the third time this summer (plus a month or so) that I had to lop off the long locks of my Wandering Jews.  The one on the left, obviously, has had its trim job.  The one on the right came next, but I wanted to get a comparison shot.

Two of the giant spotted begonias need to be repotted.  What I think I will do with both is prune them back to a smaller size when I do so.  I had thought to do them today, but schlepping everything inside and most upstairs was enough labor for me this day.  And, honestly, that is why I have yet to light a fire.  I am not really up to schlepping wood at the moment.  I am thankful, though, that the plants are all safely inside.

Tomorrow, my goal is to disconnect both hoses for the winter.

Meanwhile, I shall snuggled with my Fluffernutter beneath all the blankets and try to rest ... to rest and to shed my abject annoyance over the HVAC.

Friday, October 16, 2015

All my spoons today...

I moved the two stonecrops that were not quite spaced properly.
I am glad I did.
I am knackered

With chronic illness, there is a popular theory to explain life with chronic illness:  The Spoon Theory.    I had heard of it before, but it is not language I have adopted or use readily.  Last night, I came upon the original article and read it through more carefully.  I do like how she explains the difference between having limited energy resources and not having to think about them.  To, she explains how getting ready is really broken down into a series of challenges for the chronically ill that takes far more energy than the healthy person.

In the video I posted yesterday, I smiled when the doctor mentioned washing hair.  Taking a shower is hard, especially with the effect warm/hot water can have on me, but raising my arms above my head long enough for a quick shampoo and cream rinse leaves me ever so exhausted.  That is why, now, I shower at night.  And, why, I shower far, far, far less than I care to admit.  Hygiene is still important to me even if I feel unhygienic much of the time.

It's hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons."
Reading this bit of the article was a real Come-to-Jesus moment for me.  I have just got to start planning more carefully how I use my resources.  Period.  Overdoing it is simply not worth whatever I might achieve.   But how?  How do I learn to do that when I am the only one here to get things done??   SIGH.

All I have done today and all I plan to do today was move the two stonecrop bushes.
I am glad I did.
I am knackered.

Thursday, October 15, 2015

If not for me...

I have found such interesting ... stuff ... on the Facebook support group.  Some of it is not something anyone outside of life with dysautonomia would understand.  Not really, I think.

I know.  I can hear you now.  "Myrtle, you don't like to be touched!"  Yes, I know, but sometimes I need to hear those very words and to have some sort of physical connection ... if not a hug, a hand squeeze.

I do not like memes.  I actually do not like that we made up a word for them.  But I have found a whole lot of memes on that support group that I do like.  They are what I long to hear outside myself. This one is so ... apt.  It is perfect.  And it is what I wish that everyone would know about me.  This is one reason why going to the symphony is so difficult.  More than two hours of sitting.  I wish I were brave enough to ask the Fort Wayne Philharmonic to allow me to bring a pillow and lie down somewhere, perhaps in the side seats not sold or something.  But, oh, my, does lying down on the floor upset others something fierce!

For someone who earned her Ph.D. in two and a half years, this is devastating to look at and yet I like it because I HATE when I try to talk about cognitive dysfunction and folk respond with, "Oh, but you are still so smart."  It is like being punched in the stomach and smothered at the same time.  Those words are ever so cruel, even if the speaker intended them to be otherwise.

This one, I think, shows what a difference my life is from others.  At least others who do not suffer from dysautonomia.

There are more, but these are the ones that I saved to my computer so that I would have them for me. So I would have them as a reminder that I am not alone.  That I am not crazy.  That I am not an hysterical female.  Yes, I have a hospital admission where I was charted as exhibiting hysteria.  SIGH.

As I mentioned, I removed the support group notifications from my newsfeed because they are often difficult to take.  Stories of suffering.  Stories of being ignored or mistreated.  Stories of despair.  Stories that are nothing short of suicidal pleas.  I only go to the support group page when I am feeling bolstered (such as after suffocating Amos for a while as I crush him against my body) and when I am feeling safe.

Because of this ... risk factor ... of the support group I have considered leaving it, thinking that I had at least gotten what I wanted from checking it out.  However, today, I was reminded of the riches it has to offer.

So much of what I have tried to share about living with it is covered in this video... objectively and subjectively.  I am ever so thankful for the support group if only to finally have a comprehensive way to introduce someone to life with dysautonomia, even if the video is primarily focused on POTS when there are many other illnesses beneath the dysautonomia umbrella, because it presents the many and varied ways dysautonomia affects the body and one's life.

If not for me, for one of the million or so Americans or the millions more across the globe suffering from dysautonomia, please spend the 45 minutes it takes watch this video.

Wednesday, October 14, 2015

Crazy thoughts...

Early Tuesday morning, I was weeping at my stupidity.  By 8:00 AM-ish, I was worried I done serious harm to my body.  As I was getting ready for my doctor appointment at 11:00, I was stifling screams.  Definitely, this was the worst bout of post-physical-labor pain yet.  I was floored by its intensity.  It was not until late Tuesday evening that the edge began wearing off and I could dare to hope for an end to the agony.

I want to write about the visit with the integrative medicine specialist, only later....

Tonight, I went to the symphony to hear the first of the four chamber performances.  Yesterday, I wore a Thermacare wrap all day.  In the wee hours of the morning today, I remembered my back brace, which is neoprene and thus makes my back hot, and put it on.  I honestly believe a normal person feeling the level of pain I am in even now and would be racing to the ER.  I think I have gotten better at enduring pain, but that is only because, as of now, Migraine pain is the only pain I am willing to medicate beyond Tylenol or Ibuprofen since anything stronger slows my already compromised digestive system to a crawl.

I did wonder about grunting and groaning and moaning as I drove, walked, and sat for the performance, but I also thought about how much I savor going to the symphony.  Music won the day.

There were three pieces, rather than two.  This is the second time that there has been a performance arts piece, something called Table Music (only in French).  Literally, they played tabletops.  I was not impressed.

The second piece was so beautiful I was weeping by the end. I was so very thankful that I dragged myself to the Fort Wayne History Center just so that I could experience Klughardt's Wind Quintet in C Major OP. 79.   I wasn't alone in the awe and wonder of it because when I went to tend to my needs during intermission, the bathroom was filled with women gushing over the performance.  It was truly spectacular and one I wish that I could add to my non-existent-but-longed-for classical music playlist.  Oh, how I wish I knew how to find and select solid performances of the pieces I have enjoyed most over the past two plus years!

The third piece ... well ... I spent the entire piece trying to figure out just what about it was keeping me from enjoying the lush composition by Brahams, his String Sextet No. 1 in B-flat major, Op. 18. If I didn't know better, I would say that one or more of the instruments was not properly tuned. But it has to be the music itself. I could never relax and become lost in it.  Just as I started to feel safe these jarring sounds that seemed absolutely wrong would poke my ears and prod me to walk out.  Only I didn't, because that would be incredibly insulting to the artists.  I do wish I could have figured out what was bothering me about the music.

All in all, I am very glad that I went.  I was late in getting to the car, since moving is still so difficult.  However, I nabbed the last spot on the street near the door (the handicapped parking ... indeed the entire lot's parking ... was already taken), when I arrived 15 minutes before the performance started.  That spot was a blessing.  If I had had to park on another street and face several blocks of walking, I would have had to forego the performance.

You would think this constant reminder of just how weakened I am and what consequences I face by trying to do things I am no longer capable of doing would finally sink in.  The thing is ... despite the still overwhelming pain ... I am rashly considering moving two of the stonecrops. I thought I had measured correctly, but today I saw that I am about six inches off on the ones to the left of the rose bush.  Yes, that will bother me.  And right now is when I should address it.  Otherwise, it is going to bother me ... maybe enough to do even more ill-advised gardening labor.

Monday, October 12, 2015


I did too much, again, today.  But it is really, really, really hard for me to admit that I cannot (should not) do any yard work anymore.  Not just some.  Not even a little.  Nada.  Zilch.  Absolutely nothing.

The variegated weigela has languished this year.

By comparison, its mate has flourished after taking a very long recovery period following the construction on the back porch.  Both weigelas were marked as "sun" plants, but the plain weigela has done rather well in the partial shade.

So, I moved the variegated one over to the empty spot on the other side of the steps, where I have been hankering to plant a lilac bush.

I about died.

That should have been all that I did.  However, I had such plans.

For example, the utter wrongness of the too-large stonecrop between the rose bushes has been bothering me something fierce.  I wanted to move them, but was not sure where.

This is the bed on the side of the house, which used to be filled with too many daffodils and the garage-sized rose bush.  The rose bush I had to completely cut back.  SNIFF.  SNIFF.  At least it has sported some growth and thus is not completely dead as it had looked.  I decided to put the stone crop here.

First, I divided each of them to space two plants on either side of the rose bush.  If it grows back as high as the garage, the stonecrop should still be okay in the shade of the rose "tree."

Don't the rose bushes look ever so much better now??  I need to prune them back, but they are still blooming!  Maybe in a couple of weeks.  Well, maybe I will ask Firewood Man to prune them back for me in a couple of weeks.

I still would like something low and GREEN between the bushes.  Clearly I erred in selecting stonecrop last year.  SIGH.

The moving and hole-digging and replanting and watering just did me in.  I was sooooo exhausted.  That really should have been enough.

However I had already put clean sheets on the bed.
Amos needed a bath.
I needed a bath.
And then there was the laundry....

Knowing that I had already changed the sheets and had so much laundry that it was spilling out of my closet, I should not have tried to do yard work.  But I have so much to do.  Such as dividing all the hostas in the bed on the side of the house.  No, I didn't make it there.

I did have dirty towels from two of Amos' baths, which exhausted my supply of Amos bath towels.  So, I had to do laundry in order to give him a bath.  I also had two sets of dirty sheets and every single pair of underwear I own.  And six of my hoodies.  And eight pairs of lounge pants.  And all of my compression stockings.  And nearly all of my socks.  You get the picture.  I had to do laundry.

I am in such agony from the musical bed gardening that I could tear my hair out.  I hurt soooooooo much.  It is hard to move.  But I am still working on the laundry.  The sixth and final load is in the dryer.  The fifth load is on my bed, needing to be folded before I can get in it.

I called Firewood Man, weeping, after moving the weigela.  The inside of the back porch roof still needs to be caulked and painted.   The rock river, smashed during construction, still needs some more rocks.  The corners of the gutters still need re-sealing.  The leaning evergreen tree still needs chopping down.  The basement toilet still needs re-setting.  The yard still needs aerating.  Those "still" things have been lingering for months.  And the hostas should have been split last year.  I cannot do most of those.  I think I should be able to.  Not the ladder/gutter or the chainsaw/tree, but the rest.  Surely.  Only ... no, I cannot.  

Realistically, baths for Amos and I and fresh sheets is all I should do in a day.  All I should do in several days.

When I am lying in bed, my heart rate drops into the 40s and 50s.  When I get up to go to the bathroom or fetch ice packs, my heart rate spikes to the 150s and 160s.  It triples or almost quadruples.  I feel miserable.  I shake.  I fight to not faint.  And when I crawl back into bed it takes a very, very long time for my heart to calm down enough for me to fall back asleep, even if I am really, really, really tired.  This is so much a problem that I am tired all the time and also find myself avoiding bed, even though the GREEN chair is not large enough to sleep in all night long.  Naps, yes.  Overnight, no.  It is just one thing that makes life hard.

Why, then, do I make it even harder by doing too much, by ignoring the fact that I cannot do yard work anymore?  That I either need help or need to let it go neglected?  Oh, my, my body is screaming at me.

Why ... why did I do this to myself??

Sunday, October 11, 2015

No more creases...

His weighted blanket and a pile of pillows makes for a very contented Fluffernutter.  The pillow in the foreground is actually heavy, so Amos was quite squished.  He just loves that!

I went trolling for recipes last night ... to sort of ... assuage some upsettedness and found several to try.  I adore chicken satay with peanut sauce and found a really sound recipe.  However, it serves eight, so I really need some crash company.  I also found a recipe for lemon basil hummus that I am just dying to try, but I do not have a food processor.  I am not sure it would work in a blender ... or the NutriBullet.  I FINALLY found a nut free-seed free-granola recipe that I plan on trying as soon as I am up for standing in the kitchen.  I found a new rub for grilled chicken that had my mouth salivating.  And I found a rather interesting pork kabobs recipe.  Gosh, I want to try them all!  Immediately!!

At the risk of having to backtrack later, I will note that I followed a link from the Facebook Dysautonomia support group to Dysautonomia International about medications that have been helpful for some in the battle against autonomic nerve malfunction illness.  Most are drugs I cannot take because while I have low blood pressure normally, my blood pressure spikes are inordinately high.  Part of the review included herbal medications.  One of them was Butcher's Broom for helping circulation in the extremities and swelling in the legs.

I honestly believe that my cardiologist is just not hearing me when I try to tell him how swollen my lower legs are.  Yes, I am heavier.  But even when I was heavier than I am now due to all of those steroids, my ankles never swelled, nor did socks leave painful creases on my ankles.  I looked up possible interactions with all of my medications and read some more about Butcher's Broom before ordering it.  I do not exactly understand why, although I read two medical articles about it, but standardized (10% ruscogenin) is much more efficacious than plain Butcher's Broom.  After many reviews and side-of-the-bottle perusing, I chose Swanson's, but ended up getting it from Amazon instead of the manufacturer's website.

I am on just the fourth day of taking it, rather dutifully, twice a day with a glass of liquid, but I have already lost 4 pounds and there are, at the moment, no creases on my ankles.  I am THRILLED!  While I do not expect to continue to lose weight, I am hopeful about not having such swollen ankles. Moreover, I am wondering if it might also help with the Reynaud's in my feet (blue feet).  The temperature was low last night, but my feet were surprisingly not cold.  Less cold feet might be too much to ask for, but I would be thankful if just the swelling and pain in my lower legs is lessened.

Aroma therapy and now herbal medicine.
I don't even recognize myself.
What will be next?  Magnets??

Saturday, October 10, 2015

Me, myself, and I...

Yesterday and today have been rough, with the wretchedness of yesterday iced with a migraine.  Feeling so lonely and afraid, I rather petulantly watched really, really, really bad cheesy sci-fi disaster movies instead of sitting in the quiet darkness to help the migraine medicine alone.  I suspect that is why I have not been able to shake a headache today.

I used to email and text my friends of my wretchedness because I feel so utterly alone.  But I feel even more lonely when there is no response.  First one and then the others became too busy with their own lives and families to respond in a timely manner.  My emails go almost unremarked now.  Those I stopped sending in the wee hours of the morning.  I only text one person now, but realize that even that friend is too busy.

I have been so very thankful for starting counseling again and for how ... good ... I think that she is.  However, I am so bloody weary of hearing how I need to have a support team.  I don't have one. I cannot make one.  I am not anyone's priority and, in my opinion, I think the only way that would happen is if I had either a different family or were married.

Being so utterly alone in this life of the chronically ill is one of the reasons that I do not think I could survive it without my Fluffernutter.  It is hard, therefore, when he is punishing me for tending to his personal grooming.  I have to get the matts out of the curls on his ears.  If I do not tend to them, they will only get worse.  However, Amos has been upstairs, hiding from me, even though he watched me put away the detangler and grooming comb, for more than two hours.  Every time I try to woo him back to my lap, he runs away and stuffs himself into some small space.

I get that.
Stuffing one's self into small spaces is comforting.
I am in need of comfort.

I learned that the theophylline price is going up, the co-pay.  It is no longer a preferred brand and is the highest tier, the co-pay for which is also significantly changing (a percentage, not a flat amount).  I have so many of the smaller doses, I thought that I would try taking the 300 mg (two of them) to make up the 600 mg.  However, the 300s are the 12-hour version.  And although I have now tried three different manufacturer's versions of three different doses I absolutely cannot tolerate whatever is in the 12-hour extended release formula verses the 24-hour extended release formula.  I become symptomatic as if I am overdosing on the theophylline, and also battle incredible abdominal cramps, migraines, and arrhythmias.  Even taking less than I need makes me ill.

Reluctantly, I threw out all the 12-hour pills tonight ... several months worth of medicine between all the dose changes over the past two years (the pills not yet expired).  I do not wish to be tempted financially into feeling so ill again.  SIGH.

I have noticed on the Facebook support group that many folk post the way that I emailed or texted ... a cry of illness and fear, a plea not to be alone in the moment.  Sometimes the posts go unremarked.  Sometimes folk respond with encouragement and reminders that the person is not alone.  I have thought about trying to post there, but the counselor is really, really, really adamant that support comes through relationship, not virtual interactions with folk you've never met.  Maybe, one day, I might get to know some of them, but support the type of which I'm supposed to build into a team (again, I am ever so weary of hearing about this) doesn't come from strangers.  And, before, when I would make such posts on my personal Facebook page without much support from folk I thought had become friends of a sort, I felt even worse than just being ill.

Support with illness flares.
Support with cognitive battles.
Support with appointments.
Support with coping with/managing chronic illness life.

Yes, well.  That would be nice.  I would go for just not being so alone when my body makes it difficult to see past a moment (hours) of misery to life on the other side.

I sure wish I were better at talking to myself....

Wednesday, October 07, 2015

Still grateful...

The ineffable gratitude for not being so ill lingers still today, but the giddiness abounding within over not being sick is no longer sufficient to counter the soul crushing exhaustion from being ill ... Monday and every day.  I was able to put away my Amazon Subscribe and Save order and the dishes from the dishwasher.  I also went to get gas, having received a notice about rising gas prices.  And I girded my loins to also address my tires.

The low-pressure warning light came on in the car last Saturday.  Or at least I noticed it on the way to the symphony.  But it was dark and I did not want to try checking the air in my tires until daylight.

I think that tire pressure warning system is the one true luxury item on my Highlander.  My second car had electric windows.  I thought I was in heaven.  This third car has electric windows, automatic transmission, and the tire pressure warning system.  The lap of luxury.  January will make this my oldest car, once it turns 12.

Anyway, I had my tires rotated and balanced in July with the oil change and they are not even two years old yet, so I was wondering why one of them was low.  However, ALL of them were low!  I do not understand how that happened ... unless they were not properly checked in July.

To check the air in my tires, since air costs money, I prep the car first.  I pull the hose out all the way. I remove all the caps and set them atop each tire.  And I pre-check the air in the tires to find the lowest one first.  Only, as I said, they were all low.

When I started, I had both front doors open, and my purse had spilled onto the passenger seat.  I was bent over (VERY BAD FOR ME) removing the cap from the front driver's tire when a man reached into the car to pick up my phone.  I was startled and fell back and yelled.  None of the other customers at the station even looked over at us.  I screamed at the man to get out of my car.  He did,  dropping my phone and calling me a rude B_____!  The nerve of him!

He wouldn't leave and I was not ... thinking.  I proceeded to ignore him and finish what I was doing.  Stupid of me, I guess.  He wound up the hose and told me to go get a man to do the job, but then left.  Shaking, I pulled it back out, put in my coins, and worked quickly to get all four tires properly inflated.  And then I got back into the car, locked all the doors, and looked up in the operations manual how to reset the tire pressure warning system.

Sometimes ... well ... I wouldn't mind a planet that was all female.

Back home, I collapsed into the GREEN chair and have been there ever since.  Holding Amos.  Reading.  Thinking.

Tuesday, October 06, 2015

Those small things...

I was so very grateful today that I was not ill that I was practically giddy. I wouldn't be surprised if my counselor's notes read: MANIC!!!!

My tweet from early this morning: The cessation of the pain of a migraine is almost as visceral and overwhelming as its presence.

Just after 3:00 AM, twenty-five hours after my flare (I have learned that is what I should be calling my illness episodes like that) ended with the end of my migraine.  I did not fall asleep until around 5:00 and could not sleep past 11:00-ish today, but I was so infernally grateful I was bouncing off the ceiling all day.

Worried about the non-economical meat I thawed for the stew, I made it tonight, filling up the last of my non-colored single meal mason jars.  [I used the colored ones for pasta meals.]  Braising the meat, I was so very pleased with the stew skill I have acquired.  Filling the jars, it was hard not to eat a bowl, even though I had two main meals today to make up for not eating yesterday.  But the stew is even better once it has been frozen for a while.  

What was one of my meals today?  Stew!

I also made Maple Chili Roasted Pumpkin Seeds.  I REALLY do wish that I could remember the things that I like.  Since my stash of Red Bob Mill's products in is the basement on the shelves there, I forgot that I had pumpkin seeds.  I made a double batch and filled two jars of them.  They are so very good for me.  And tasty.  

[Mary, feel free to remind me about these the way you periodically remind me about deviled eggs ... which I would like to make soon.]

While I was cooking, I took courage and ... well ... joy from two small things that cheer me.  

Emily's FROG card has traveled about the house with me, kept in eye-sight, ever since I received it.  I left it on my cutting board with Amos' bit of mail since Sunday as a bolstering tool to help me get through doing the dishes.  Standing wearies me.  And stresses my heart.  And drops my blood pressure.  Plus, I see it each and every time I fetch fresh ice packs.

This was Amos' mail that arrived in a package for him.  His beloved Aunt Becky finished the last resting pad so that he now has a place in the bathroom upstairs.  When the package arrived, his SIXTH SENSE just knew that it was for him and he dragged it about the first floor until I opened it, since I had left it in his reach on the deacon's bench.

[Becky should NOT be inculcating my Fluffernutter regarding the boring sport of baseball!]

Both pieces of mail were such small acts of mercy, but they have reaped profound, on-going merciful blessings to me.  I have such positive thoughts when I see them and, let's be fair, I oft need bolstering.  And, despite all the visual rest I need, I do not actually mind that there are "things" on the cutting board.  The cooking cloth reminds me that I accomplish tasty culinary activities, the tea back holder reminds me to actually make more tea, and the bits of mail remind me of the mercy of my friends.

Tonight, as I was cooking, I took a break to take out the trash (with the meat packing in it).  A young man came running up to me and frightened me.  I screamed.  He immediately backed away, but was begging me for help.  I must have had volumes written on my face because he said if I would help him, he would lie down on the floor with his hands on his head if he had to just to prove he wasn't there to hurt me.

He was so very frightened and young, though clearly a teenager.  I actually have never seen someone so frightened in person before.  Someone not me.  I wanted so dearly to bring him inside my house, but all I could manage was to direct him to come into my fence once I took Amos inside and to rest in the GREEN rocking chair on the back porch.  I told him I would call the police and then watch over him from the kitchen window.   I also asked him want he wanted to drink and poured him some Gatorade.

Thankfully, the police came very quickly, only having THREE MEN outside my kitchen door was disconcerting for me.  I just peeked from behind the curtain and half waved at one of them.  The police must have sensed my fear because they called for a female officer who came to my front door and explained that they were taking the young man home.  Three males had "jumped" him in the park down the street, but the young man had gotten away without serious injury.  The policewoman thanked me for looking out for the young man.

Emily made such an encouraging comment on Facebook.  I had posted about the young man because ... well ... I was hoping one of my very few friends would pray for him if they read of his distress.  I felt so bad for not doing more and for not offering him the hospitality of my home.  Emily reframed my guilt for me telling me that I had done what I could and had been helpful.  The policewoman's remarks underscored Emily's comment and helped relieved my lingering guilt.

When I was little, we had these standard signs (some color and shape I am forgetting) that folk could put in their front window to let children know the house was a safe place to go if they needed one.  I think that that practice should be revived and revived in our neighborhood.  I am even (rashly) considering trying to go to the next neighborhood association meeting.

A dead body on the porch down the street on Sunday.  A young man attacked in the park two blocks down tonight.  A house broken in two doors down last year.  I think it is time for a crime watch in our neighborhood, eh?

Not related, but I wondered if you wondered just want a really, really, really ill person does as the day of misery drags on into the night?  Well, if you are me, you will decide that getting rid of the very scraggly ends of your hair, which you have not cut in well over a year (or was it two???) will make you feel better.  Despite your trembling body that stands for very little time without fainting, you will grab the scissors and lop off those scraggly ends.

Don't they look better?  I am most certain that no longer having scraggly ends (which were embarrassing when I actually looked at my hair when getting ready for the symphony on Saturday) was part of what propelled me to survive the bodily misery that was this latest flare.

[Yes, I am lying down in the GREEN chair ... as per usual.]

Where was Amos?, you were asking. Sometimes he is in my lap.  Sometimes he is squished behind my back (don't ask).  And sometimes he is perched up top checking out the activities in front of the house.  He becomes a very, very, very large Fluffernutter when perched up there.  I have to be careful that he doesn't tip us over.  

[Yes, that has happened.  Yes, more than once.]

I really did too much today, given how much (how long) I will be paying for yesterday's flare.  The cooking.  The rescuing.  The dish cleaning.  The trash and the recycling carried to the bins in the alley.  Getting dressed, venturing out, and going to counseling.  And I also unpacked (and cut down the boxes to take them out to recycling) the bi-monthly Amazon Subscribe and Save order.  It is all on the deacon's bench at the moment.  Maybe tomorrow I will work up the strength to take Amos' food to the basement, distribute the toilet paper about the house, put away the herbs, and make up some more gorp with the Reese's Pieces that arrived.  

Or maybe Thursday.
The order is stacked all neatly on the deacon's bench.
And I cannot see it from the GREEN chair.

Or Friday.

Monday, October 05, 2015

My day thus far...

Fall asleep around 2:30 AM.
Wake at 4:42 violently nauseous.
Take Zofran.
Feed Amos early.
Take Amos outside.
Drag yourself back inside because your heart is starting to race.
Take fresh ice packs back to bed.
Try to lie still enough for your heart to calm.
Writhe in bed until just after 10.
Stumble first to the bathroom to take more Zofran, even though it is too early.
Get fresh ice packs.
Fall back onto the bed.
Text best friend of your misery.
Become frightened over arrhythmias.
Blood pressure tanks because you will eventually be pooping.
Stumbled to bathroom floor.
Writhe more.
Text more.
Realize you failed to remember first-of-the-month heart worm pill for Amos.
Crawl back to bedroom and pull yourself up into bed.
Heart racing and beating irregularly.
Get out of bed.
Drag yourself downstairs for fresh ice packs.
Crawl into GREEN chair.
Try to read.
Post one article to Facebook.
Screen blurs.
Full body tremors start.
Migraine starts.
Wail because because your migraine meds are upstairs.
Realize it is time to poop.
Try to stand again.
Crawl to half-bath.
Poop and puke at the same time.
Fall to the floor, miraculously avoiding vomit on the floor.
Crawl back to the GREEN chair.
Sleep some.
Heart skyrockets.
Head explodes.
Realize blood sugar is crashing.
Crawl to kitchen.
Pull yourself up the cabinets to the counter and reach for the glucose tablets.
Collapse to floor.
Contemplate ordering a guillotine off of Amazon.
Try to stand.
Get fresh ice packs.
Stumble back to GREEN chair.
Text best friend desperation.
Swallow more Zofran.
Stare at crucifix for several hours.
Crawl to stairs.
Crawl up the stairs.
Crawl to the bathroom.
Pull yourself up the drawers to sit on the tub.
Take migraine meds without water.
Slide into tub and turn on water.
Peel off soaking pajamas and try to wash remnants of puke from your person.
Drag yourself over the edge of the tub and lie on the bathroom floor shivering.
Wonder why it is you leave the best cane in the car.
Drag yourself to the bedroom.
Pull on fresh pajamas.
Break out the big guns by putting on Emily's GREEN socks.
Manage to stand without fainting.
Check blood pressure.
88/52 HR 167
Stare at bedroom crucifix.
Stumble to the stairs.
Slide down the stairs.
Stumble to the kitchen.
Down two glasses of Gatorade.
Fetch icepacks.
Turn to go back to the GREEN chair.
Be grateful for blanket still on the kitchen floor.
Crawl to the GREEN chair.
Stare at crucifix again.
Pull yourself into the GREEN chair.
Nearly suffocate Amos whilst you weep.
Reach for computer.
Drop computer.
Curse loudly.
Pick up computer.
Try to capture day thus far.

This was my initial dysautonomia diagnosis.  Clearly life has gone downhill since August 6, 2010.

Heart pounding.
Head exploding.
Body trembling.


Couldn't imagine this life without Amos.

Saturday, October 03, 2015

Too much...

With all those mason jars filling up my drawer (and subsequently rather empty freezer) from going a month without a real grocery trip by eating up my freezer meals, I needed to cook.  Like yesterday.  And I did.  Starting yesterday.

I was so tired fetching groceries Thursday that I did not finish my list.  Hence, no new curry for me yet.  However, I decided this weekend I would restock my staples.  Friday, I made Chipotle Chicken Chili.  Today, I made Spicy Dr Pepper Pulled Pork and Myrtle's 15-Bean Soup (a new recipe).  Tomorrow, I plan to make Beef Stew with Beer with the meat thawing in the refrigerator.  By the end of the weekend, I shall have 44 meals back in my freezer.

I have been wanting to make 15-bean soup without using the flavoring packet.  I had not worked out how to do so and planned to make more black-eyed pea soup.  However, after thawing the bacon and the ham, I realized I was out of black-eyed peas.  So, I took the chance to plunge into the world of 15-Bean Soup without the flavoring packet.

I like the recipe I created.   I cast a very wide net and went for smoky/savory/hint-of-sweet.  Amos like it, too, carrying the "cleaned" bowl around the living room for a bit.  For the recipe, I used herbs from my raised bed.

Watching the mason jars disappear from my drawer is rather satisfying.  So, too, is seeing the empty freezer shelves filling up.  However, I will admit that all this cooking has been a bit too much for me.

That is especially so since I did try to go to the symphony tonight.  I took a shower (which was too much for me) and dressed (also too much for me given how much time I spent wrestling on my compressing stockings) and drove to the venue (too much for me given that meant walking from the parking garage to my seat).

The first half was unbelievable ... until just before the end.  As I have done for a while, I was reading as I listened using my Kindle.  Since I cannot clearly see the instrumentalists and since I like reading in such a peaceful atmosphere, I read.  At the chamber performances, there is a knitter.  I figure that I am in good company.

Only tonight an usher put a hand on my shoulder, squeezing it before sliding down to my upper arm,  to tell me to turn off my Kindle.  I jumped and yelled and started shaking like an aspen leaf.  Whatever distraction my very, very, very darkened Kindle was my reaction was far more disturbing.  SIGH.

I couldn't calm down and did not really hear the end of the final movement.  My cheeks had been flushing ever since I climbed the stairs to my seat.  I do not know what triggers it, but I always view it as a sign things are askew with my autonomic nervous system.  Being startled and touched certainly didn't hurt.

I felt a rush of searing pain from head to toe as my nerves fired on all cylinders, my heart rate sky-rocketed, and my ears started roaring. I tried taking slower breaths. I tried listening for my favorite instrument (oboe). I tried savoring the incredible historical architecture.  Nothing worked.  My body was going hay-wire and I was too tired to cope there.

Feeling like I was cheating, somehow, I left during intermission, trudging ever so slowly back to my car and back to my pajamas and my snuggly puppy dog.  No Rachmaninoff for me.  SIGH.

My head still hurts from my concussion.
My body still aches from my fall.
And I am ever so weary from life with dysautonomia.

I would not make the beef stew on the morrow except for the fact that the meat is thawed.  Would that it were a magic genie would pouf into my world, cook the stew, clean the dishes, and .... maybe ... brush my hair.

It is beginning to bother me that I have not styled my hair in years.  No hair dryer.  No curling iron.  Nothing.  All that is too much for me.  Even sitting, having my arms above my head for any amount of time is too much.  I am doing good these days to wash it.

Sometimes, though, a girl just wants her hair brushed.

Friday, October 02, 2015

What I do not really know...

After learning how to do so, I turned off the notifications for the dysautnomia group in my newsfeed. That way, I can only look at them when I am ... ready to do so.

I find it comforting, in a way, reading posts that could be my life, seeing just how many others struggle with the same bodily suffering.  And I have actually learned a few things, most particularly discovering a resource of medications, both prescription and herbal, that have helped folk with dysautnomia that is physician reviewed.

Since treatment of dysautonomis via medication is primarily off-label use (finding drugs that have side effects that mitigate or diminish symptoms), there is no one-size-fits-all treatment.  What helps me will not necessarily help others.  What helps others will not necessarily help me.  For example, many people with dysautomia take SSRIs to treat symptoms, but I cannot tolerate them.  Their side effects greatly diminish my already poor quality of life.  Many also take beta blockers, but those are rather dangerous for me because of the wild swings in my blood pressure.  And I have been taking theophylline for years, but many cannot tolerate it at all.

The suggestion I found was to take standardized Butcher's Broom to help with the swelling and pain in my legs.  I emailed the integrative medicine specialist and then, after the okay, ordered some to try.

For those two reasons, I am glad that I took the step to get back on Facebook and join the support group.

Why, then, block the posts in my feed?

I have been staggered and ... humbled ... and saddened ... by the abject despondency that is often posted in the group.  So much fear.  So much darkness.  So much hopelessness.  So much helplessness.  So much loneliness.  The cries, the desperate pleas for help are heart wrenching.  Quite frequent are posts from people clinging to the end of their rope, telling the world they are losing their grip.  All I could think was:  "Lord, have mercy.  Christ, have mercy.  Lord, have mercy."

And that is problematic for me.

Yes, the posts are, which is why I figured out how to not have them appear on my feed.  What I mean is the prayer that came to my lips, reading post after post.

I want to write about faith, but each time I try to speak about it, I get no where.  From where I stand, I get no where, even if others might think I am being heard.  If I truly was, the words spoken back to me would be different, I believe.

I have never understood church membership and it was never required as an evangelical.  While I understand the need for closed communion, I do not understand the need for vows and membership as I have experienced it as a Lutheran.  And I will say that I was more of a "member" of churches as evangelicals than I ever have been as a Lutheran.  That said, I requested (with help) and received a release from membership at my church, having, to me, never been much of a member or a part of the body of Christ, or any of those things.

I wanted to no longer receive the many requests for donations that I receive.  Each one felt like pressure and pressure is not something I handle well these days.  I wanted, more importantly, to no longer have an official ... public ... record of a vow I never understood and feel is dishonest.  And, given that I do now know about my faith, I did not want to be dishonest in membership.

Without knowing what I did, my counselor has said that it is important for me to go back to the beginning so that I can learn the things that I miss.  I cannot fathom how it is that I can go back to the beginning and learn what it means to trust.  But, to me, undoing the membership was a way of my going back to the beginning.  Even if no one understands that.

What is faith?

I honestly wonder, much of the time, now, if the sky is really blue.  Or do I think it is blue because someone told me it is blue and I just followed along because that is what you are supposed to do.  Not because it is my favorite color, but I know that leaves are really green because I vaguely remember the process of chlorophyll.  I do not remember anything about why the sky might be blue.

From a very young age, I learned: Shut up.  Be still.  Wait until it is over.  And I learned:  Do not tell. I learned wrong things and obeyed wrong ... instruction/teaching/modeling (??).  When I finally got to go to church, a few years after first hearing the Word at a summer camp, I was found by a pedophile.  By that I mean, it was not long after becoming a choir member that I found myself trapped in a room with a man who had other ideas than practicing our parts.  I told.  Nothing happened.  That's the way being hurt was for me.

For a very long while now, I have doubted that I have faith.  Primarily, this is because, when writhing on the bathroom floor, I am not crying out to God for help.  I whimper, to be sure.  Sometimes I wail, but not usually because wailing would take more energy than I have in those moments (hours).  I do not expect aid or rescue or healing.  I expect life to continue as it has since being diagnosed, first with MS and now with Dysautnomia.  Actually, I think it was the first ER visit with asthma, when I didn't even know I had gotten asthma (or that adults could get it) that I became resigned to being ill.  Asthma, arthritis, reactive hypoglycemia, hypothyroidism, and Reynaud's.  Those last three are a function of dysautonomia. I do not know about the arthritis.  Asthma ... well, Northern Virginia is an epicenter for adult onset asthma.  I blame locale for that one.

What is faith?

I wrote a while ago about my word book.  When I was in graduate school, reading hundreds of children's and young adult books for my classes, I realized just how many words I skipped because the only meaning I knew was what I could glean from the surrounding text. I could not define them for you, such as with the word "alacrity."  That is a common word in fantasy.  I have come to suspect some fantasy writers have their own dictionaries of words-that-must-be-used, such as "ablutions."  The latter is actually a ritual washing, but is used in stories in lieu of simply saying "washed up" or "cleaned up."  "After morning ablutions"... instead of "after getting ready for the day..."  The former means eager willingness.  Many folk do things with alacrity in fantasy books.

I started keeping sticky notes on the covers of my books, writing down every word I could not actually define.  I later looked them up and then recorded them in my word book, a blank journal.  Obviously, my vocabulary improved.

Encountering Lutheran doctrine, which I still believe to be a true exposition of the Word of God, I realized that there were far too many words in Lutheranism that simply do not mean the same in mainline evangelicalism.  That was a real problem for me.  [It still is.]  I blogged about it. I talked about it. I tried to say that I was beginning to realize that I do not know what it means to have faith.  Or what it means to believe.  [I think those are two different things.]

What I can ferret of believe is to fear and love and trust God.  Well, I do not love and I do not trust.  Not really.  That is my dirty little secret.  Deep inside me is emptiness.  An absence.  And I do not mean the proverbial hole that God fills when you become a Christian.  Maybe what I am speaking of is just another facet of disassociation.  I do not know.  But if you tell me that surely I love Amos, that I do love, I will most likely scream in frustration, if not reach for the nearest pillow to chunk at you.

I do not know if I love Amos.  And, frankly, loving an animal is so absolutely not the same thing as loving a person or loving God.  At least I cannot see how that can be.

Fear God?  Yes, well, I've got that one down pat.  Trust Him, trust in His provision?  I do not.  I do not have another God (I'm sure others would argue with me on that one), but I am not trusting myself or something else.  I am ... paralyzed ... just going through the motions of existence ... not knowing what will come next.

I am a thinking person.  My goodness, I have three college degrees, two of them graduate ones.  I earned my Ph.D. in less than three years, taking 50 graduate credits in a single year.  I love studying.  And because I love studying, I did a whole heck of a lot of studying of the Book of Concord.  The one part of it that I cannot escape is the teaching that a knowledge of history is not faith.  From where I stand, I have a solid argument for a knowledge of history but a decided lack of evidence for faith.

What do I believe?

Well, that is complicated.  This is especially true because I received some harmful false teaching by a Lutheran pastor and it is near impossible for me to un-hear his words.  I am so confused I do not know which way is up or down or right or left.  What is before me?  What is behind me?  Couple that with my neurological problems with being oriented to time and place and my cognitive dysfunction and you have a recipe for spiritual disaster ... if you ask me.

Be it unfair or not, I happen to think the questions I have tried and tried to ask, were I a child, would have been answered or addressed differently.  Granted, I acknowledge that some answers have been given and I have said they helped ... but they did not remain with me nor did they stave off the certitude I have about the fact that I do not love and I do not trust.

As for the latter, I have very good reason.  From personal to professional to medical.  I have been mistreated and lied to by people in authority and I have trusted, in my clumsy fashion, the wrong people.  My track record stinks.  But more importantly, I think the counselor would say that I have no foundation for trust or love.  And that is my real problem.

In the past six months or so, I have had epiphany after epiphany and I just do not know what to do with those thoughts.  I admit that I have been profoundly hurt by the response to my wanting to be released from membership.  I was not prepared for that.  However, I just cannot see how membership fits with salvation.

What I also need is to not hear what I would call spiritual platitudes:

  • It's okay if you do not think you have faith because I know you do.  
  • It is in times like this that you can lean on the confidence of Jesus Your Savior.
  • You do not have to understand to believe.
  • Stop naval-gazing.  [I think this is particularly dismissive of the doubter.]
  • You are trying to put your faith in faith instead of Jesus.  [No!  You are not hearing me!!]
  • We all doubt at times; this will pass.

Actually, I stink at remembering and looking up emails is too painful for me, but perhaps those make my point.

The truth is that I worry that I am a psychopath, so cold is my heart of hearts (whatever that is).  I have actually taken three different tests for that (online), but ranking low on them is not enough for me.  I want to understand how it can be that I am so cold inside and not be a psychopath.  My counselor said that a psychopath would not worry about being a psychopath (just as I heard that if I worry about having faith is evidence of faith).  I practically yelled at her that that is not enough for me.  What are the diagnostic criteria?  If I do not meet them, then why am I a block of ice?

I have been deeply worried about having either a heart attack or a stroke or both.  I still am, to be honest, but I worried to a much less degree than I was.  Now, it is just a niggle that looms a bit larger in times of blood pressure and heart rate swings.  It was not my cardiologist who eased my fear.  Or there it was not only him.  He used words that I did not understand.  He repeated them to me several times because I kept asking about a stroke, well, I asked sideways by telling him how worried I am about my wide pulse pressure (the difference between your systolic and diastolic pressure numbers).  Standard is 40 (such as 120/80).  I am often at 70 and have been as high as 92.  I feel physically wretched when my pulse pressure widens and I become very, very, very afraid.

It was not until I found that video on the autonomic nervous system that I finally began to grasp what the cardiologist was telling me.  I have reactionary wide pulse pressure.  Physical stress causes my systolic to rise whilst my diastolic pressure is being suppressed.  That is one way in which my autonomic nervous system is malfunctioning.  Stroke with wide pulse pressure most often occurs with permanent wide pulse pressure, not the periodic reactionary wild pulse pressure that I experience.  Given that I also experience very narrow pulse pressure it is easier to see that it is my nerves that are driving the problem, not my cardiac system itself.

I had to watch the video many times to grasp the bulk of the information.  I forget a lot of it, actually. But I do remember that the vegas nerve runs the length of my spine and connects the brain to every single organ (all my viscera).  Its failing, understandably, has a profound effect on my health and well-being.

If only there were a video about faith.

So, I have cringed when folk keep asking me to pray for them and for their family and friends because I stopped praying.  I still ... well ... talk to (or is it at) God, but I do not ... petition.  I do not know if I should ... or can.  A lot of things about my house have been triggers for my upsettedness about faith.  I removed them or moved them out of sight.  I stopped taking the Lord's Supper because I never received a clear answer as to what is the harm that can be taken in the Lord's Supper.  To me, doubt seems pretty harmful when it comes to the reception of the Lord's Supper.  I just don't want any more pretending about faith.

When I stopped, I honestly thought I would eventually learn what I needed to learn.  But I did not.  And the further away from the last time I had the Lord's Supper the more confused I have become.

I was listening to sermons, but I cannot find where the ones I was listening to are being posted now.  And, frankly, the whole world of "podcasts" seems Greek to me.  I read two pastor's sermons.  However, reading is oft difficult for me.  It struck me, recently just how much I re-read.  I mean, when watching things online or streaming them, I usually seek out the recap or synopsis to help me follow the show/movie.  I recently tried to edit a book for a friend and just couldn't follow it.  I struggled with comprehending it page by page, as well as from beginning to end.  It is grievous to me to realize this latest loss.  I alto think it is a hindrance to finding the teaching I need.  Often, even emails are confusing to me.  SIGH.

So, well, all of that is to say that I am a bit ... discombobulated ... at my response to the agony of body and mind and spirit I see in the dysautnomia support group posts.  It is an overwhelming, devastating, constantly changing illness.  It makes for a very, very, very poor quality of life.  I thought of something the other day:  Fainting to me is like sneezing to you.  Chew on that for a while. It is heartbreaking to see such misery and such bald pleas for help.  Yes, you can write words of encouragement and offer advice where asked.  But ... really ... Lord, have mercy.  Christ, have mercy. Lord, have mercy.  is what is most needful.

I just do not know what to do having found such a prayer on my lips.


Why do I not make the same pleas for help?  Why do I not feel or experience the same depth of hopelessness?  I found myself searching for a post describing what it is like to be on the bathroom floor and did not find it.  So far, I have found the symptoms and the suffering I face, but I have not found what I feel or what I think.  Is that because I do not actually know what I feel or what I think?  Or is it because there is hope in me somewhere that I cannot even recognize?


For those who are battling the un-winnable war in their bodies that is dysautnomia ... Lord, have mercy.  Christ, have mercy.  Lord, have mercy.  I cannot tell you that there is hope in Jesus, because I simply do not know what that is supposed to mean.  But I can say that the source, the font of all mercy is the triune God.