A bit more...

The Doctors addressed POTS and the accusation of faking illness today on their show.  For me, it is both sad to see the cruelty others show and yet also encouraging to have the validation about invisible illness.

I just knew that it would be, for me, essentially a waste of money, but I ended up going to the ER last night because my head hurts ever so much and the nausea was rather profound.  I have a concussion and contusions.  I knew that.  I need to rest and be careful.  I knew that.  Falls are dangerous.  I knew that.  Still, I went because my level of fear spilled over into the unmanageable.  In a nutshell, it was hard for me to endure such pain in my head that was not from a migraine.

That effects of that are a bit more than I expected.

I was not honest about just how badly I feel, so I could get home to Amos.  Besides, resting, much less sleeping, in hospitals is near impossible for me.  I also neglected to mention that I had driven myself.  I just wanted to be home, to be in my safe place where I feel less embarrassed about being a whimpering wet noodle.

As the hours have passed, my body has become more and more sore.  Never mind the rather spectacular brushing.  Maybe this is what football players feel like, hitting the ground so hard??  I was offered pain meds, but I declined.  They slow my innards even further.  So, I am popping Tylenol.  And Zofran.  And the toradol that I have for migraines (quick pain relieve to cover the gap before the migraine specific medication kicks in).

I feel just wretched.
Much worse than usual.
And I need to fetch prescriptions.

SIGH.

The good news?  Yesterday, I learned that Blue Corn Flour Tortillas dough balls freeze quite well! Yay!  I only ate one and have one for today, but I am still incredibly nauseous.  Maybe later.  After a nap (or two or three, though I am supposed to remain awake today).  And copious amounts of Amos cuddling.  And if the pain in my head ever decides to subside.

Faking it...

One of the most cruel aspects to having dysautonomia is being accused of faking it, from the medical community to even your own family and friends.  Suffering from such debilitating illness is hard enough; being accused of faking it increases suffering ten-fold.  And story after story after story can be found online and in the news.  Dysautonomia is an umbrella label, if you will, for Postural Orthostatic Tachycardia Syndrome, Neurocardiogenic Syncope, and Multiple System Atrophe.  Often, sufferers have multiple diagnosis, as well as other co-morbid conditions, especially autoimmune ones.  All three are marked by dysfunction of the auto-immune system, hence the word dysautonomia.

Because our bodies are all individualistic and how our nervous system malfunctions can vary from moment to moment, much less day to day, dysautonomia will not look the same, feel the same, be the same experience in every patient.  However, there are many, many, many symptoms in common and hall-mark signs.

I do believe that the experience that nearly everyone with dysautonomia has in common is disbelief ... is being accused of faking it, of having psychosomatic symptoms, of trying to get attention.  Here is the sad, but almost stereotypical response one young woman had to go through before finally being diagnosed:  Woman, 21, with debilitating chronic illness that causes 'never-ending nausea' says doctors refused to diagnose her - and even suggested she was 'faking' her symptoms.  It even happens to young children.  SIGH.

For me, this is a constant problem with seeking medical care, and one that frustrates me to no end, hearing over and over and over about "stress" or "emotions" when I am have a diagnosis and documented test results demonstrating a malfunction of my autonomic system.  For example, my first appointment with the Internal Medicine Specialist, I was so nauseous that I did not think that I would be able to go.  I told her staff and her that I was violently ill.  Yet when I went to my second appointment, the doctor went on and on and on about how much more "chipper" I was, more positive about life when I was there as opposed to my first visit.  Because I am soooooo very slow on the uptake these days, I did not remember just how ill I was the first time.  I was ILL, I was not lacking in positivity or "chipper's."  SIGH.

However, the deepest wound, that continues to both hurt and plague me, is the lengths that one person went to in order to convince others that I was faking it.  Five years ago, just as I was finally diagnosed with dysautonomia, when I had been fainting for years, seeing doctor after doctor, including several cardiologists, a pastor whom I knew and visited took it upon himself to not only accuse me of faking it, but going so far as to email other pastors in the LCMS in the process, declaring me to be faking it in order to gain sympathy and to manipulate others.  He believed that I had Munchausen Syndrome (making oneself ill in order gain attention from medical personnel and have unnecessary tests and procedures and even surgeries) and Borderline Personality Disorder, among other things.  He is not a physician nor a psychiatrist to proffer such diagnoses.  It was a brutal betrayal that, unfortunately, has followed me ever since.    Apparently, it is easier to believe the lies of someone who is not qualified to make the assertions he did than to believe the truth.  Or to believe my diagnosis. 

Or my suffering.

Not a single one of the other pastors came to my defense or sought to offer comfort after such a scathing personal attack.  The pastor who made the claims asserted that everything he did was in my best interest.  I have learned in counseling that no one does everything for the good and that absolute statements such as that are red flags.  Nonetheless, I remain at a loss at how accusing someone of such a thing and bruiting it about to others would be helpful.  My reputation was most thoroughly trashed.

Given that I have also heard from my family about being a "hypochondriac," such doubts assail me ... about everything.  

Standing still is the single hardest act for me, physically.  The longer I stand, the less I am engaged with whatever is going on around me, because my focus narrows to the quivering in my legs and buttock muscles, the racing of my heart, and the weakness creeping over me.  To this day, I still take far, far, far too long to sit on the floor if there is nowhere else to rest.  But I am getting better at doing so.  

You could say that that internal battle is an invisible aspect of my chronic illness.  And that would be true.  But I believe the worst invisible aspect are the wounds of having my suffering disbelieved.  I cringe and even weep when I read the stories of others who bear the same wounds, who battle the same cruel insensitivity, knowing how profoundly it affects one personally and what a barrier it can be to getting proper medical care and community support.  

To be fair, some of that cruelty stems from a lack of understanding and education.  By that I mean not a lack of listening to the ill person, but actually researching dysautonomia so as to become familiar with the hallmarks of life with chronic illness in order to recognize them when friends and family speak of them.  But few, at least in my life, have done this.  It still staggers me that my new counselor already has, already is trying to help me adjust to life with chronic illness, as well as the wounds of child abuse.

I think ... I think I am in shock because she is not telling me that I should already be over it ... over the loss, over the change in my circumstances. 

Anyway, that is my take on the struggle of invisible illness:  Having to bear the wounds of your suffering  disbelieved, of being accused of faking it.  I mean, Who? Who in the world would chose this life???

Tonight, my leg gave way.  That is actually something that started before I was diagnosed with multiple sclerosis, back in the mid 1990s.  It is as if my leg, or sometimes just my knee, disappears.  I was walking, for me, somewhat quickly down the hallway, trying to get to the bathroom.  My leg gave way.  I fell to the ground, hitting my head first against the wall and then the floor, landing very hard on my left hip.

I was stunned.
I messed myself.
I raged against my body.

All I could do is to lay there and wait.  Wait for dizziness in my head to subside.  Wait for the pain in my body to ease.  Wait for my leg to reappear.  Wait for the fortitude to gather up the shards of my self and gird my loins enough to face the reality of my life and to address the mess.

I wasn't going to write what I really wanted to say about invisible illness until the fall.  No one was here to see.  No one was here to help.  I could, as usual, just pretend that that is not who I am, the person who had to deal with bodily messes.  But I do not want to  ...  pretend.  And I do not want to remain silent about what is, to me, the worst aspect of invisible illness.
  

Invisible illness week...

I did not make it to the store today, which means a) I cannot see if a lower watt bulb would make my neighbor any less furious with me and b) no curry-making for me.  I had planned to go after my appointment, but I am so weary and I have milk.  The latter sealed my grocery-shopping fate.  Maybe later in the week.  Maybe when it is cooler (Thursday/Friday).

I find it ... interesting ... that the new counselor has learned more about dysautonomia in two weeks than anyone in my personal life knows.  She has researched both personal stories and medical sites.  She also asked for a list of all of my medications and planned to look each one of them up to see how I might be affected by them.  Her response to what I learned was how devastating having dysautonmia must be, having such a profound impact on quality of life and the constant cycle of grief for the things you are losing.  Again, she said that it is clear to her that my pretending about being better than I am is not just for others, but for me, too.

I find that ... disconcerting ... to ponder.

This is Invisible Illness Week!  Bloggers are encouraged to write about their fight against invisible illness, particular the battle(s) others do not see.  I am inspired to write, but then again feel so overwhelmed at how scattered I have become.  Maybe before the end of the week....

From that website, I learned about a really cool book:  Beyond Casseroles 502 Ways to Encourage an You can order a copy here.  Or you can get the Kindle version.  Or you can read an excerpt of 52 ways to encourage the chronically ill.

Dysautonomia Awareness Month is October.  Illinois just acknowledged (proclaimed) that.  I wonder how that happened.  I think, too, Wisconsin has joined in on the campaign.  I find that staggering, given just how few even in the medical community know what Dysautonmia is.

This really cracked me up!

I like this one because it emphasizes the vagaries of life with dysautonomia and how folk might look fine, but actually are most decidedly not fine.


The counselor said that it was normal, my longing for my life to be understood and the efforts I am making to manage my illness acknowledged, but she said that unless folk when to the effort she did, they would not understand if they did not have dysautonomia themselves.  I replied that I wish I had cancer ... so explanations wouldn't be necessary.

I feel as if my life is so infernally small:  illness, budgeting, cooking, Amos.  And that most of my life is not ... well ... anything of interest.  I was thinking about how my neighbor, who until recently was the most frequent human contact in my life, asked me not to talk about budgeting or cooking or illness.  Flat out.  Topics not to be discussed.  Boring were her words.  Despite the restriction, being lonely, I would invite her over for a drink after work and then mostly listen to her life, which is all about custodial work.  I find myself not all that interested in copious amounts of industrial cleaning knowledge.  Can I blame her for not wanting to hear about cooking or budgeting or dysautonomia?

I suppose I am trying to say that I do not feel heard and being heard is important to me given what I am facing.   [Or maybe say what I am trying not to face???]  Day in and day out.

It was a big step for me, today, to concede that getting up and getting dressed and going out and talking was enough for me.  Shopping needs to be on another day.  And not two outings two days in a row.

Which brings me back to needing support.  The nearest support group is in Nevada or Maryland.  I think Maryland might be closer. I did not Google it.  The point is that there is not even one in the whole of Indiana or the mid-west.  This gives rise to thoughts of Facebook again. I do NOT want to be on there, for all the negatives that crushed me.  However, there are several dysautonomia support groups on Facebook where no explanations are needed.  And where it would be acknowledged that getting up and putting on clothing is applauded as the achievement it is.  Gosh, for that matter, the fact that I showered last night would be cause for celebratory adulation.

Living with chronic illness causes you to value the efforts of cheerleaders.  SIGH.

I found one of Michelle's articles that mirrors stuff from her blog, but written so beautifully.  It is from a journal in April 2015:  Sucker Punched:  Ducking and Weaving through the Grief of Chronic Illness.


Earlier this year I had a ceremonial burning. I dragged my body up the steep stairs to our study. No mean feat when your muscles are wasted and weak, and your blood pressure has a fondness for dropping at the most inconvenient of times. I went through my folders and my filing cabinets. Thesis, work documents, neurology articles and course work, were shredded with ruthless efficiency as I sat on the floor. I filled up grey Woolies bags by the dozen. Some, I binned. The rest, I burned. A large bonfire out back. Carbon footprint aside, it was incredibly satisfying watching the ashen motes of paper rise up on the hot air and disappear – a moment of reprieve. Of loss conquered. Or so I told myself. But loss and grief don’t work that way. Not when you live with chronic illness.

‘No one expects the Spanish Inquisition,’ or that, at thirty-three, they’ll develop a serious and debilitating chronic illness. Sure, I expected that I might finally be beyond getting carded at clubs. That maybe Supre was no longer a shopping option and even that silver eye shadow may make me look more mutton than lamb. But not that my dodgy genes would kick in and my body would forget how to stand. And yet, somewhere between doing a presentation to the ethics committee at a major Melbourne hospital, and lying, covered in electrodes while a neurologist I once worked with asked me about my bowels, I transitioned quite spectacularly from professional to patient.

In 2006 my body broke and it has continued to break. I have a vague diagnosis few have heard of, Dysautonomia, to pin it on. A contrary, unpredictable disorder where the most basic of body systems fail or malfunction. And suddenly the world of work, doctorate, and the odd sav blanc with a girlfriend, has been replaced with pill boxes and offering the universe my first born if it can stop me passing out in the rancid loo of yet another 7-Eleven. To quote a naff, but very catchy, 80s novelty song, ‘It’s life, Jim, but not as we know it,’ and I’m still trying to navigate a path.

Six years since I walked out of work for the last time and the grieving process continues. For work. For study. For possibilities. I’m grieving me. Or at least the picture of me to which it would seem I was very attached. Whether that old me ever existed or is the fictional construct of rose-coloured glasses and a frequently blood-starved brain, I grieve her all the same. I grieve the loss of choice. I grieve the loss of function. I grieve the pieces of me that progressive disability and illness have torn away. Devoured piece by piece, day by day and year by year. Big and small, I am consumed by my own body. And just when I get a handle on things, another loss occurs. And suddenly the fact that I can no longer vacuum my house is a cause for tears. Choice is perhaps the biggest loss and my dog-hair covered floor both mocks and reminds me of that loss.

I tell myself that I am okay with the changes that illness has brought to my life over the past eight years. And when I say brought I mean, beaten me over the head with or sucker punched me at every opportunity. Progressive chronic illness takes mercilessly and indiscriminately. Every time I find my even keel I am hit once more with loss, big and small. When I realise I can no longer do something I could do a week beforehand. When I find a piece of my before life. When I am once more reminded that I am different. That the me I thought I was and was going to be is long gone. Michelle 2.0 looks vaguely like version one, although I’m pretty sure version one would most likely mock version 2.0’s now bright blue hair and prodigious mouth breathing abilities.

I used to be a psychologist, but that is a lifetime ago. A lifetime that, today, seems completely foreign. Like something I read in a book sometime. Or a late night movie that I was watching but only half-awake, so I am left with nothing but half-formed snippets, that don’t quite make a whole.

*

My memory is not great. I struggle to recall day-to-day, but in some ways the long-term forgetfulness worries me most. I remember walking along the ward corridors. The hustle and bustle of over-worked nursing staff. Blue clad physios bent over our elderly patients gently lifting limbs and murmuring words of encouragement. I recall sitting at a patient’s bedside holding her hand as she cried, distraught, wondering why her husband, long-passed, had not visited. I remember the little room at the front of the ward where we’d take patients and their families to deliver bad news. I remember the look on the faces of adult children forced to make the tough decision to send their parent to a nursing home. The smell of Avagard in its pink bottles dotting every room and every corridor. The less savoury smells of patients no longer in control of the most basic of bodily functions. The beeping and the buzzing. But it is all snippets. Faces and events merge into one another. I am left with nothing more than a jumbled montage to represent that period of my life.

There is a special grief in losing the particulars of those memories. I was working in a new hospital on the edge of the city sprawl when illness first came calling. A growth corridor as they like to call it. And grow it has. I drive past now and the open windy paddocks that surrounded are filled with building after building. Concrete, glass and steel. I can hardly see the hospital from the road. It is as half-glimpsed in real life as my time there in my memory.

So much of me was wrapped up in that job. I defined myself by the label on my ID card and so did those around me. It was on my cards and my stickers. It was reflected in the books on my shelf. The large pull-apart brain model I used to explain the infinite varieties of strokes, tumours and dementias. The large posters on the wall of my office showing the same collection of disorders and injuries and the handouts I’d prepared for patients and families. It was on my shelves at home and my green bag that carried my life from home to work and back again. It was the shorthand means of communication at parties, even though Neuropsychologist usually leant itself to blank or confused stares. It’s not the most common of professions.

I was one of the lucky ones. One of the few who end up working in a job they love. And still I lie here today having forgotten the details of my time there. It’s like looking through a car window on a rainy night – everything is distorted and half-formed. You know the splodge of yellow light above your eye line is a streetlight and the two red lights in front a car, but only through interpretation and deduction, not because of clarity. The survival mode in which I was functioning that last year at work seems to have been little beyond a ruthless practicality. Identify task. Complete. Drop. Move on. No time for reflection or integration. And as a result, I am left with a time more flickering mirage than reality. Not living but existing. And lost time is all I really have to show for working myself into the ground in an attempt to cling onto a life I was no longer capable of living.

*

Slowly I have been unpacking that part of my life. First it was my work bag. Then my files. My text books are packed away in the cardboard box wasteland that is the garage. My awards and certificates are packed away somewhere. The fact I no longer care as to their location, a huge step. But I still have my professional membership cards, a handful of business cards and most of my work clothes. Slowly I am peeling off the layers. Slowly I am letting that part of me go.

A few days ago I sat on the floor of my walk-in wardrobe and started sorting through my work shirts. Our combined marital hoarding tendencies make it a cramped little space, but I like that. Where normally I am claustrophobic to the extreme, that little room, filled with the bits and bobs of our life, is somehow comforting. I was holding a red long-sleeved shirt in my lap and I felt an unexpected visceral hit. It’s an unremarkable shirt other than being my favourite colour. Just a small variation of every other work shirt I still own. A mass-produced cotton and elastane blend. And yet I found myself rubbing my fingers over the fabric with a building sadness and longing. I don’t recall any specific instance when I wore it. It is remarkable in its ordinariness. But it triggered the feeling of loss nonetheless.

A small part of me still thinks, maybe. Maybe one day I could return. I have visions of myself St George-style, slaying the dragon. I’ll ride back in through those sliding glass doors on my magnificent stallion, the Dysautonomia beast slain, its bloody head hanging from my clenched fist. But it is not to be. My rational mind laughs, knowing I am no longer mentally or physically capable. It also reminds me that I am allergic to horses and perhaps should watch fewer episodes of Game of Thrones. But the maybe persists. It would seem I’m still working on that part of my life.

*

Acceptance is found in pieces, disjointed pieces. I’d love it to be a clean, formulaic one-hour television episode. I’d like to believe that lie. But grief jumps up and grabs you when you least expect. Denial, bargaining, anger, depression and acceptance. Grief knows nothing about the artificial stages we impose upon it. And grief where the initiating event is never over, takes pleasure in mocking the neat lineal path set out in my old textbooks. Instead it’s more: Step 1 anger, Step 2 sadness, Step 3 pissed off, Step 4 really pissed off, Step 5 denial, Step 6 immerse yourself in Bold and the Beautiful (denial in any other language), Step 7 bargaining, Step 8 depression, Step 9 chocolate binging… and so on. It’s a messy process and it’s even messier when there is no finality to the loss, no end to the episode.

The time that came before illness is as much a part of me as the now. It has formed me in ways I can both acknowledge and have yet to discover. I miss that time. I grieve it even now. I will no doubt grieve it in the future. The grief is far less than when I first sat crying on my couch while the social worker from the local outpatient rehabilitation centre sat opposite deciphering my sob-obscured mutterings. But while muted, it is still there.

So I’ll hang onto those shirts until the time when I am ready to let them go. When I no longer need them, and they serve no purpose. For now they can sit there in the jumbled pile I shoved onto the shelf. To be ignored until the next time I think I’m ready. I’m pretty fond of that grieving stage known as denial. I think in this case, we’ll just hang out for a while yet.  ~Michelle Roger

I found myself weeping and nodding my head at the same time.  She gets it.  I envy her the community she's found in struggling with chronic illness.  And I am thankful for the effort she makes as a writer so that I can see my life elsewhere.  So that I can know that I am not alone.

Through the article I discovered Michelle is on Twitter (@RustyHoe) and through Twitter, found two more dysautonomia feeds I would like to follow and, subsequently, was reminded about groups on Facebook, such as POTS, where I would be one of the crowd.

Dare I try being on there again???
SIGH.


It was strange, but I was so incredibly hungry late last night/early this morning.  Theophylline takes away your appetite, so feeling strong physical hunger is so unusual for me.  Maybe it was just nerves and not actual hunger.  Around 2:00 AM, I gave in and ate the meal I had thawed out for today, my black-eyed peas medley.  I also had one of the blue cornmeal muffins.  I have found a recipe for sweet corn muffins that I would like to try.  I thought for sure that I would like it better than my first recipe. However, the non-sweet, nutty, bold blue cornmeal muffins that I made were such a perfect compliment to the black-eyed peas.  I think I was a bit surprised by how much I enjoyed the muffin.  I still plan on, however, trying the sweet version.  Soon.  If ever I work up the energy to fetch groceries.


Symphony is this Saturday.
I wonder if I will make it.

A hybrid...

I have been trying to make my bed in the afternoon, because going bed with a made bed is more cheering than walking into a disaster zone of a bedroom.  It is my compromise because I feel so wretched when I first get up that I have not the wherewithal to make the bed.

This early afternoon, I took a shower and then stripped the bed and put on clean sheets. Doing so will force me to give Amos his bath today ... to not put it off any longer, no matter how I feel.  I do not plan to do laundry, though, until Tuesday.  Why?  Because I just might have a second cooking cloth to wash on Tuesday.

Why?
I made my hybrid!

Yes!  It is possible to make a blue corn flour tortilla that is a culinary success!

I very much dislike regular corn tortillas.  I find them dense and a bit gummy.  ICK!  I simply do not eat them.  I wanted to incorporate blue cornmeal to have the protein and health advantage to a flour tortilla, but still essentially have the experience of a soft, fluffy flour tortilla.  It worked!!!

For the Blue Corn Tortillas recipe, as I wrote in the notes, I decided to use the 3/4 to 1 cup ratio, but to add the missing 1/4 cup as additional flour. I also increased the baking powder.  And I used some flavoring that I found whilst Googling millions of corn tortilla recipes.

The end result was a soft, fluffy tortilla that is slightly denser and tastes of corn.  As I was eating the tacos, pictured above, I noticed that the tortillas cracked where I folded them, so I had to hold them a bit more carefully.  However, I am very, very, very pleased with the results.  I had the experience of a flour tortilla that has a bit of the healthiness of a corn tortilla.  And, in case I have not mentioned this before, blue corn has higher protein than yellow corn, which is why I am focused on experimenting with blue cornmeal.

The key to success, the proving of it (baking pun intended) will be if the dough balls freeze as well as the flour tortillas do.  So, following the advice of my best friend, I shall have a Taco Tuesday this week.  If the dough freezes well, I will make a full batch of the Blue Corn Flour Tortillas.  My fingers are currently crossed!

Blue thoughts...

"Boneless, skinless, all-white meat wings" ...  I'm sorry, Sonic, but your commercial is wrong.  Those are nuggets not wings.  Wings are a specific part of the chicken that must have bones and dark meat.  Unless ... have you genetically modified your chickens????

Sometimes, commercials irk me.  Clearly.

Last night, I made Blue Cornmeal Muffins.  I made the traditional recipe, using the lower amount of sugar.  Next time, I would like to make them sweet cornbread.  I found them to be interesting, as the cornmeal I bought is medium grind.  So, they are sort of crunchy.  Today, I had one with the Chicken Chipotle Chili and found the combination to be tasty.

Today, I, using the NutriBullet, I milled some of the cornmeal so that it was finely ground. [I utterly adore the NutriBullet!]  I did so because I wanted to try making blue corn tortillas, but I chickened out.  I cannot find a recipe for blue corn tortillas that looks doable and my thoughts of replacing cornmeal for flour in my flour tortilla recipe do not actually seem theoretically sound.  Although ... this blog post does show that substitution is possible and offers a specific ratio to follow.  The bottom line is that I know zilch about cooking with cornmeal and am, thus, highly culinarily nervous.

This is what my mason jar drawer looks like when I spend a month eating down on the freezer meals without regularly cooking to replace them.  While I have essentially achieved my severe austerity goal, I do have a severe crowding problem in my drawer!

Even though my budget cycle starts tomorrow, I am going to wait to shop until after my appointment on Monday.  Getting dressed and going out and walking about two days in a row would be too much for me.

Mostly, today I have been napping.  I did get the dishwasher emptied and the rest of the hand-wash dishes cleaned.  Amos is in dire need of a bath (and the sheets cleaned), but I have primarily spent my awake moments Googling for blue cornmeal recipes.  I want to learn more ways to use it!  Flapjacks, though??? I am just not interested in those.

Actually, what is a flapjack?
Wait, let me Google.
Okay ... I prefer the British version ... either plain or fancy ... no cornmeal though.

I will admit that I found eating blue muffins a bit weird.  Even so, I ate two of them, just to be sure I liked them.  With butter, of course.


PS  I am now an ardent fan of Pam's happy baking spray.  Each time I have used it, such as with the red velvet brownie mix Thursday night and with the blue cornmeal muffins, the baked goods have practically leapt out of the pan and clean-up was a breeze.  Had this been around a few decades ago, I might have grown up to be a baker ... or weight about 500 lbs now.

Sticker shock...

It does not make sense to me that the price of gas can keep a cost of living adjustment from being made when it is INORDINATELY more expensive to live, year over year.  I have already noted just how much car and house insurance increases and my real estate taxes, too.  When I first joined Medicare, there was no monthly premium for prescriptions.  Then it was $17 a month.  Then $22.  Now $34.  All the medical co-pays and prescription co-pays were increased last year.  Now, again, they have been raised once more.  And where there once was no co-pays, such as for blood work (which I get OFTEN, imaging, and the like, there is now a $15 co-pay per test.  Sticker shock really doesn't even describe it.  With disability scheduled to become insolvent around September-October of 2016, and the current "solution" to be to only pay 80% of the monthly award, I simply do not know how I will afford the medical stuff in my life.

Other than not going to appointments.
Or taking medications.

It looks like the hormones I am taking will no longer be covered.  They are not optional.  The generic Celebrex has increased in price (SIGH).  But THANKFULLY Zofran is still on the LIST.

I do not want to be the person who pinches pennies so severely (and then finds rebelling financially here and there), who counts the cost of a visit by increases in utility and grocery bills.  But that really is who I am.  And I do not know how to not be deeply concerned about the insolvency of the disability fund.

It is hard, too, knowing that the financial advisor who pushed and pushed me to make liquid all my retirement stock was so very wrong.  She sort of scoffed at my Amazon stock.  It is now $300 more than when I sold it.  Had I done what I wanted, sold every thing but Amazon, I would currently have THREE HUNDRED THOUSAND DOLLARS more in retirement to deal with all the financial raises in my life.  I think I am mostly good about not dwelling on that error, but at times like this, when I am scouring the 2016 insurance plan and noting all the increases, I become frustrated that I listened to an "expert" instead of following what I know to have worked for me all my investing years: my own common sense.

The task of comparing available plans and considering total costs, as well as confirming that the doctors I see are still in my network, cannot begin until October 1st, even though the plan changes arrived in the mail today.  So, somehow, I need to set all this medical worry and the need to research my options aside until then.  I STINK at setting aside such.  SIGH.

I have been trying to go without the air-conditioning, but last night was quite warm and I believe the next week or so will have overnight "lows" to high to stick it out.  I would like to chill myself down now, especially because I found an interesting article about dysautonomia and body temperature.

Two bits to quote, since I doubt anyone reads what I link:

Recognizing that probability of heat and cold intolerance and the potential consequences (often fatigue or pain) makes it important for patients and families to use good planning when going outdoors, getting into a hot car, swimming or bathing, etc.

It drives me just NUTS when I try to say that it is too hot for me to be outside and for someone to respond: "Oh, it's not to hot at all!"  I get that a lot.  It is dismissive of my medical condition and rather insensitive.  It is also inordinately frustrating.

"I just thought I was crazy for feeling this way," said one MitoAction member on the call. Be assured, you are not crazy, and the symptoms associated with dysautonomia can be very confusing and really challenging as they affect how one feels and even how well one can function! There are patients whose primary symptoms of their underlying mitochondrial disorder are related to autonomic nervous system irregularities. Still, many people wonder when to react and seek medical help. First, know the patient's baseline. For example, if a person's baseline temperature is around 97 degrees, a temp of 100 degrees is more concerning than in a person with a normal baseline temperature of 98.6 degrees Farenheit. The same idea applies to heart rate, blood pressure, and daily function. Second, always respond by consulting a doctor the first time that any unusual symptoms occur. In addition, rest and good fluid intake are two keys to managing mitochondrial disease, as well as autonomic nervous system dysfunction.


I have actually been reading a lot about how mitochondria might be the actual cause of dysautonomia.  [I always think of Madeline L'Engle's books when it comes to mitochondria!]  But here is an example of where I TRY to seek medical care when my temperature is 100, but each time my concern is dismissed, even though I point out that my baseline temperature is approximately 97.3.

I confess that I have more tea than ginger water of late, which has affected my innards ... functioning.  It took me a while figure that out and have only just started adjusting for having tea, too.  I would like to have cucumber water again, but I do not like the waste of cucumbers going bad if I have not fully used them in time.  I haven't Googled, yet, for dried cucumber to make tea.

Oh, uhm, dried sea cucumber.
No.

The new curry paste is burning a hole in my proverbial pocket.  I have everything I need to make a massaman curry save for potatoes.  Sunday cannot get here soon enough!


PS  In case you were wondering, red velvet brownies are not acceptable for assuaging offense taken over a light at the exterior entrance to a basement.

To light or not...

The antenna (and the other four items) arrived early today.  Installing it was so easy I was almost embarrassed over my worry about it.  I have it temporarily stuck up in the window, but I shall endeavor to clean the window and used the double-sided tape ... soon ... to have a more secure installation.  This is the antenna I chose.

See the football on the screen!!!!!!

See the UGLY monstrosity of an antenna (on top of the book case) that I replaced??  Maybe having it broken was a blessing of a sort with the whole visual rest aspect of my living room????  Now, if you look carefully, you can see the cord running above the printer, but with the antenna in the window, you cannot see it ... at least not at night.  I have yet to tuck the cord behind the printer because I am considering moving the television to the corner and putting the printer on its other side.

Yes, I am using an antique tea table with inlaid wood as a TV stand.
In this instance, I am NOT the daughter of an interior designer!
No one is perfect.

The cooking items have me all excited about the next two curries, but I also am committed to waiting until Sunday (the beginning of my budget cycle) before shopping.  I did, however, buy milk. I decided that I was NOT going to ration milk just to meet my severe austerity goal.  Instead of saving $400 for the month, I will have saved $396.42.  I think that I should be just as pleased with the slightly off-goal amount as much as if I had met my goal.

Plus, I have lots of milk to drink as I celebrate the approaching light at the end of the proverbial tunnel (Sunday).

The other package that arrived was the replacement dongle for my FitBit Flex.  It took me a while to realize the reason that I was not getting the battery reminder emails was that my dongle had died.  I was ASTOUNDED that when I called FitBit, IMMEDIATELY an order for a replacement dongle was placed and arrived just three days later.  In today's age of having to almost always FIGHT for customer service, this was nearly a miracle.  I am all synced back to my computer.

Getting the antenna in time for Thursday Night Football was a pleasant surprise and a good ending to an otherwise difficult day.  Also, getting the antenna reminded me that it was Thursday and football was on because setting it up I ran through the channels and spotted the game.

Not last night but the night before, the motion sensor on the three-year-old light outside the exterior entrance door to the basement failed.  My neighbor has never liked that I installed a light.  However, being single, I am a FIRM believer in having the entrances to my home lit up all night.  I chose a light with a motion detector so that it could remain off unless someone walked on the side of the house.  It is hardwired without a switch.  Anyway, with the motion sensor causing the light to flicker on and off, I decided to switch to the dusk-to-dawn setting.  Thinking of how little my neighbor cares for the light, I went to the basement and fetched the tools, fetched the stool from behind the parlor door, and took apart the light to replace the 100 watt bulb with a 60 watt one.  I planned to see if I could find an even dimmer light since the white siding of the two houses reflects the light quite well.

My neighbor has yet to cease to send upset texts to me about the light.
I am not going to forego safety to appease her.
It has been a rough time for me.

I realized, in the middle of the night, lying on the bathroom floor writhing with violent nausea, that I fear my neighbor.  When I am doing all the things she likes, it is great.  But whenever there is something she does not like, such as the light or some of my landscaping choices (she particularly loathes my herb bed), I bear the brunt of her upsettedness.  Sometimes it is not acknowledging me for weeks or even months.  Sometimes is it a repeated litany of my wrongs ... a recap of all the ones since I moved in next door.

Over the years, I have learned to not take on her upsettedness and to just wait for it to pass.  I have ceased kicking myself for being a "bad" neighbor and just hoped for a more pleasant exchange soon.  I absolutely do not believe that a light outside the door is an unreasonable or inconsiderate act on my part.  I tried to consider her desire for a dark upstairs bedroom by switching out the bulb and am willing to try an even lower wattage.  There is a street light out front, so there is light on the other side of her bedroom anyway.  Light ... is not un-neighborly.

However, I puked when the texts started coming in again last night as she went to bed and was shaking for hours.  I very much disliked my reaction to ... upsettedness.  But I eventually realized that the truth is that I fear her temper.

I hear her fighting with her son a lot and fighting on the phone.  Growing up in a family where alcohol abuse fostered much fighting, I do not do well with anger at all.  It frightens me. And, with dysautonomia, the tiniest bit of stress is magnified exponentially with physical responses beyond my control.

Cortisol.
Adrenaline
Norepinephrine.
The bane of my existence.

Today, I talked about the situation with the counselor I started seeing because she asked me why I was so agitated when I arrived.  I honestly thought I was hiding how I felt about the current ... failing ... as a neighbor.  And, well, I asked my friends if they thought it was unreasonable to have the light at the door.

I have wanted to talk with a counselor again.  I stopped before because, yet again, the counselor I was seeing at the free program left.  It is inordinately difficult to try trusting a therapist when you have to start the process over and over.  Non-profits notoriously have a high-turnover rate, especially ones with low pay and high stress.  There is simply no way I could afford counseling out-of-pocket.

The counselor is a hippy.  Nice and seemingly sincere.  But a hippy.  I feel like I should buy a tie-dye shirt or ... hoodie!  What is interesting is that she Googled dysautonomia after my first appointment and today asked for my medications, so she could learn more about my health.  She was disappointed that there was very little about dysautonomia, when it came to research and causes. I just smiled.  Yes, I know.

I admitted to her about my realization about being afraid of my neighbor, but also my frustration because I have tried so hard to set boundaries with her and yet I STINK at setting boundaries.  I feel the failure trying to manage the relationship.  The counselor asked me if I would be friends with my neighbor if we lived elsewhere.  The honest answer is: No.  Walking on eggshells from time to time is exhausting.  However, I do live next to her.  She does help me.  And I can help her.  Given that I help practically no one these days ... I want to keep trying.

I am just tired of living in fear.

What I found most ... interesting ... about today was that the counselor talked about how it has not been very long since being diagnosed.  I was stunned.  I mean, it has been 5 years.  She pointed out that 5 years of 48 is not a long time.  And, in that short period, I have had loss after loss after loss with the disease itself, setting aside anything else in my life.  Well, when you put it that way....

She doesn't think I understand how much I am grieving ... in the midst of all the nausea.

She asked me what could help, with facing the dysautonomia.  Her very hippy attitude is that "we" can start a dysautonomia support group so all of us in the area can help each other.  I would LOVE to have a support group, but I have nothing ... nothing in me that could bear the weight and work of starting a group.  SIGH.

But help.
I have been wanting something.
Asking, though, just ... well, getting hopes dashed is hard.

Help.  When I am really, really ill with innards misery, I will oft email Mary or text Becky.  With six children and infant twins, Mary cannot really email back.  Becky sometimes texts back, but not always.  I just want so very much not to be alone with that.  I wish that I had a cohort of folk to cycle through texting in the terrors of misery just to say I am pukey.  Or battling beached whale status. Or waiting for my blood pressure to rise so I could rise, too.

I am not looking for any particular response.  Gosh, an emoticon would do at times. And I don't expect and immediate response because I am usually worse in the wee hours of the middle of the night.  I just want to know that it is okay for me to be so ill and that I am not actually alone on the planet.  For at those dark times I feel as if I am alone ... sole survivor of some apocalypse.

Being alone makes enduring severe illness more difficult.

I called to try for an appointment last July.  The message was misdirected.  A few weeks went by without a response, so when the return call came, I had chickened out in asking for help again.  Then, nearly a month later, I returned the return call and made an appointment.  I called ... asked for help ... not really expecting help but to say that I am deeply struggling with the physicality of dysautonomia, with the pain I have in places that are a sharp and seemingly inescapable and overwhelming reminder of the abuse of my past.  The times of such pain—pain that I must simply endure until it passes—are the proverbial straw that is breaking this camel's back.

I manage so much.
I endure so much.
But the pain is too much ... for me.

Safe places...

The resting pads that Becky sewed for Amos have been such a blessing to me and to him.  He is ever so much more at peace when I am in the basement, for example, because he lies down on his pad and waits for me.  It is his safe place.  The most adorable part of them is that when Amos has a baby in his mouth and it is time to go outside, he will put the baby on the kitchen resting pad before heading out the back door!  I crack up each time I see him do that, especially with Beaver Baby, who is his current most beloved baby, apart from Flower Baby, who is his first love.

I especially love that Amos has a place in the kitchen, for other than the bathroom (that resting pad is not yet finished) and the GREEN chair, the kitchen is where I spend the most time between cooking and doing dishes.  What interests me is that I have put a blanket and towels down for Amos, which he used from time to time, but the resting pads, made from his beloved (old) bedspread quilts, are HIS PLACE.  Amos sees them as that and uses them to have a safe haven that is not on my person (shoulders, lap, chest, etc.).  Plus, I really enjoy having his company when I am working in the kitchen.

The fall crocus are blooming.  I forget they exist until I see them begin to peek through the thyme ground cover in the bulb bed.  So lovely!  I sure wouldn't mind filling the bed with them, but there were not bulbs I bought.  Certainly I've never seen them at Lowe's.

I am down to $.0.96 cents left until the new budget cycle begins on Sunday.  My milk will definitely not last until then. I do have just under $5 of Walmart Savings Catcher credit that I could use, but I am not really wanting to drive over to Walmart just for milk.  I was considering raiding the last of the parking quarters (from back when I lived in the DC Metro Area and needed parking quarters regularly) to pay for another gallon of milk.  Would that be cheating?  Or should I, if I really want to officially make my austerity goal (which is HALF of my normal budget for all the combined categories that are charged) forego buying milk until Sunday?  GULP.

Looking at the schedule for the symphony (probably the last year I will have tickets since getting to and from the performances is so difficult), I was convinced it started this week.  The problem is that the schedule said Saturday, September 27th.  And Saturday is September 26th.  For weeks I have been trying to figure out why the date is wrong, how the Fort Wayne Philharmonic could have made such  mistake.  Then, I got out my tickets and saw that the first ticket for a performance that I have is actually in October (which is really late).  I studied the schedule and figured that my ticket order was messed up.  I tried to call the box office twice, but could not reach anyone and did not want to leave a long message.  THANK GOODNESS I did not!  For you know what?  I was looking at the 2014 schedule that was still on my refrigerator!!  SIGH.

I vacuumed half of the first floor before fainting.  When I could stand, I went upstairs to take a shower and put on my blue pair of men's pajamas (sooooooo soft), before setting up camp on the airing porch.  The lavender woodwick candle is crackling, the only light beneath the starry sky.  Amos is ensconced my lap beneath and quilt and his weighted blanket.  I am debating streaming or just reading.  I confess I might have napped a bit just a while ago.  It is cool and peaceful and quiet save for the sounds of the crickets.  Have I mentioned lately that I love the restored airing porch?  It is such as safe and blissful place for me.

Do crickets sleep???

An upside...

I am feeling a bit cursed.  SIGH.

The Amazon Fire TV stick was great.  Was being the operative word.  Suddenly, today, it started rebooting every few minutes and switching over to Netflix ... not even rebooting to the Home screen. I am very, very, very discouraged and annoyed.  It would be nice if I could have a bit of technology peace.

At the moment, I am doing a restore-to-factory-default on the Fire TV Stick, hoping that will solve the problem.  However, I am taking a break from trying to using the on-screen TV keyboard.  Doing so is mentally exhausting.

The game I have been playing freezes every few minutes on the new iOS.  SIGH.  Really, I am huddled beneath a technology rain cloud.

Sometimes, there are benefits to forgetting.  For example, I could not remember if I like to brew ice tea using one teabag or two.  I was most certain it was just one.  But, for some unknown reason, I used two (the first time) at the last minute.  Boy!  I was right about having previously using only one, but, oh my, do I ever like the Bigelow Vanilla Caramel cold tea made with two bags.  Frankly, I like it ever so much better than the Snapple tea I drank from time to time, as a treat.

I was about to order some more tea, yesterday, but wondered if there was any in the basement stash.  I mean, I had forgotten about making cold tea for eons.  Months?  More than a year?  I do not know.  But I do know that, yes, there was a stash in basement.  Looking up the order just now, I bought it more than two years ago.  Good thing the packets are individually sealed, eh?

Anyway, I brewed more tea, mixed up more Gatorade, and spent eons trying to coax Amos to face his The Great Outdoors fear so that he might conduct his major business.  That was enough for me.  I'm plumb exhausted, though I did water the plants on the front porch when the reminder alarm went off. Maybe a nap or two is in order?????

Then some more re-reading.
Forgetting means books and movies are new once more.
Another upside.

Proving dough...

In case you want to join me in viewing delight, you can watch The Great British Baking Show online!  Hah!  Without any help from anyone, I remembered that I wanted to watch it and found it online.  Granted, I still couldn't figure out how to watch it on my television, but the antenna problem would have prevented me from enjoying it anyway.  I just marvel at what the lay cooks do during the challenges.

Something I learned from catching up on Episode Two, Bread:  In England, dough doesn't "rise"; it "proves"!  How apt!  The proving of the dough tells if you kneaded it properly!  And the baking tells if you proved it well.

I've chosen an antenna and ordered it, still bothered that I have to spend money on it.  It reminds me how with every visit save Mary's, going back to living in Alexandria, one or more of my things ends up broken with visitors.  SIGH.  The most annoying and grievous loss was this hand-blown hummingbird feeder that I had hanging in my tree.  A visitor went to take it down because it was empty.  I asked the person to simply leave it and let me take care of it later.  The visitor asked, "What?  Do you think I am going to break it?"  Then plucked it from the tree ... and ... promptly dropped it on the concrete sidewalk.  I adored that hummingbird feeder and can never replace it.

In the kitchen, I had a set of three ladybug votive candle holders sitting in a windowsill.  Three separate times, a visitor knocked one of the holders off the sill.  I moved each of the remaining holders, but all three were broken.  I really liked the holders and wish they were still here to cheer me up.

When I was a little girl, my grandmother would always have a cup of coffee in her tall GREEN mugs.  I received four of them after her death, even though I do not drink coffee.  The sight of them stirred memories of the good times with her, not the bad.  However, all but one of them were broken by visitors.  I have the remaining one tucked safely away, but regret that I cannot keep it out for me to spot from time to time.

The renters all had their own share of breaking things ... including my car window.  SIGH.  Too, with the renters, I had things go missing.  The loss of a hand towel from a complete bathroom set was a bit hard to swallow because the brand, Fieldcrest, is no longer available.  My mother had given me a set of three mesh bags to put delicates in when doing laundry.  I now only have two bags, the most convenient size gone missing.  I suppose it is good that I have few delicates, being decidedly old-fashioned in my underclothing and no longer wearing hosiery.

I could go on, but the reminders here are a bit tough to take.

I have tried, assiduously, since college, to hold loosely to things.  However, I think that, with all the breaking and gone missing, I have become a bit too-tightfisted with my possessions.  In December, I will have two teenage boys here.  Already I have been working on a list of things to put away.  And today I went ahead and put passwords on all my technology ... especially since one family member has a tendency to plow-ahead-first-and-ask-permission-later when it comes to making changes to technology.

I think the buying and securing has left me stewing and feeling uncomfortable with my own thoughts.  I did also, however, finish buying a few more cooking supplies I had earmarked for the upcoming curries I would like to make.

I learned that I should be using palm sugar (instead of brown sugar), which conveniently has a lower glycemic index.  That is good for me since eating my neighbor's fudge (something I should have politely declined) sent me in to a hypoglycemic tailspin and has broken the equilibrium I have been enjoying blood sugar wise.  I ordered another type of curry paste, fenugreek leaves, cardamon pods, cinnamon sticks, tamarind paste, and tandoori masala.  I am going to need another spice shelf.  I learned that the best way to use to cardamon pods is to take a needle and thread and string them together so that you can fish them out rather easily when the recipe is done.

I would like my next curry to be a massaman curry, but am torn between chicken and beef.  I also think I would like to try to find a brown basmati rice, however in my searching I have yet to find what I think might taste good to me, texture wise.  I have no problem eating curries without rice because I am not a rice person.  When I was a teenager, we had rice many times a week, or so it seemed.  We had many types of rice, but I basically graduated from college all riced out.  Serving as a missionary in Africa, where rice is a staple, put me over the top.  I went more than a decade avoiding any and all rice.  Still, in my curry reading, I learned that there are brown rices beyond my imagination and might be a good match for my digestion and blood sugar challenges.  Not, mind you, that changing foods can really mitigate the vagaries of dysautonomia all that much.

With the all ordering and another medical bill paid, I am down to $13.55 until the 27th.  I would like to fetch a few groceries this week, my refrigerator becoming rather empty, but I do not need them.  Milk, perhaps.  I have one prescription waiting on me at Target.  Nothing else owing, I believe.  Surely I should not be counting my eggs before they hatch, but I am rather pleased that it looks like, despite all the shopping I have accomplished throughout the month, I will have meet the extreme austerity goal I set for myself so that last month and this month balance out on average.  No budget guilt for me!!

With all the shopping, knowing I couldn't buy copious amounts of groceries until next budget cycle, I chose the slower shipping on each order.  By the time everything ships, I think I will have enough promotional credits to buy a new Kindle book.  Hmmm ... what should I read?

Watching the bread exercise redoubled my desire to try the hand pie sandwich recipe I found (like hot pockets), but I still have not settled on a filling for the first go-round.  The breadsticks on the episode did not call to me, but I was fascinated at watching all the different methods of kneading dough.  Have you ever seen someone "slap" knead??  Watching all the bread make me even more keen to try this recipe for pepperoni pull-apart bread.  The recipe is gone from Pioneer Woman, but I rather conveniently emailed the page to Becky, who adores pepperoni pizza, so I still have the directions.  It is rather chicken of me, I think, to still stick with flat breads instead of learning how to properly knead dough and make bread.

Proving dough intimates me.

How soon is not-too-soon would it be for me to have the second serving of Coconut Chicken Curry?  And then the third???




PS  Next time I plan to make it with yukon gold potatoes ... mmmmmmmmmmm.

PS2  In case you thought I was exaggerating about how STINKING HOT it was here, my electricity bill for the past month was the highest for this period since I moved to Fort Wayne ... highest by far.

PS3  Please, please do not give me fudge.

Finally...

It is with deep relief that I can FINALLY note the END of the fruit fly INVASION.  It has been, officially, 24 hours since there has been a fruit fly drowned in the bowl of vinegar and soap.  I went through half a bottle of the red wine vinegar and dozens and dozens and dozens of fruit flies as I regularly emptied and refilled the small bowl I left on the kitchen counter.  I was extremely pleased to learn the solution for getting rid of fruit flies, but the length of time it took for all of them to die was rather discouraging.

Normally, I would be dancing about the living room, however, I just discovered that my television antenna was, apparently, broken when it was accidentally knocked off the bookshelf during Becky's visit.  I rarely watch regular television, but I finally remembered that football has started!!

I have jiggled and tightened and whispered sweet nothings to the antenna, but it is not bringing in any channel without swaths of pixiling and dropping in and out of coverage.  When I do have the channel appearing, the sound is as if folk are talking into a fan.  I thought that it was just the PBS station when I watched (in part) the baking show.  But all the channels are more gone than playable.

DEEPLY BUMMED.
The Cowboys are starting play soon.

Today has been rough already, having fainted trying to take Amos outside and burned the meal I tried to prepare for myself.  Being upright is rather difficult today.  And I am hungry.  The downside to tasty, easy-to-reheat freezer meals is when you ruin the only meal that is thawed out.  I guess I need to start thawing out two at once.  SIGH.

I sure do with you could watch rebroadcasts of football games after the next day the way you can do television shows.  I love football.

Now to research antennas since the one I bought five years ago is eons old in technology terms.
SIGH.

Managing and managing and managing...

The house smelled like an Indian food restaurant when I came down the stairs this morning.  So, it is not merely for the incredible flavor that I shall be sticking with that particular brand of yellow curry paste next time I need to purchase it.  I cannot wait to have the next serving of the Coconut Chicken Curry!  Mmmmm!!

Two things that niggle at me ... worry me ... both have to do with ways I manage my life, my illness, living alone.  The first is that I really do worry a bit about just how much food and supplies I have in the house, since I tend to buy multiples of things that are on sale.  Buy two, get one free?  Three if not six pop into my cart.  So, the shelves in the basement that originally I utilized primarily for when there was a renter in the basement living space are now completely full of food and household goods.  I find it a bit shocking when I walk downstairs sometimes and wonder if others might think me addled for having so much goods on hand when it is just me (and Amos) in the house.

However, the other day I prepared dinner for my neighbor, who was hankering for corn dogs.  Having discovered the State Fair brand (on sale, of course) to be rather tasty and a breeze to crisp up in the oven, I happily obliged her.  When I realized I was nearly out of ketchup, I did not panic.  You see, this July, Target had a buy two, get one free sale on condiments.  I have plenty of ketchup and my beloved yellow mustard on hand.

And, today, I went to wash the dishes and discovered that my dishwashing soap dispenser was empty.  Again ... no panic.  I trotted downstairs to the top shelf (where all cleaning and paper goods are housed) and fetched another bottle of my most favorite lavender scented, no-dye soap.  Eons ago, I found the soap in two-packs that were on sale for the price of one.  I promptly bought all three two-packs on the store shelf, getting six bottles of soap for the price of three.  That is a lot of soap, but I have not had to worry about fetching it in ... well, eons.  I am half-way through my soap hoard.

Despite how ... disturbing ... it is for me at times to take a gander at my stash, I really do like the ease of simply fetching what I need.  And, again like today, when I fetch the last of something (La Costena refried black beans) I put it on the shopping list in my most FAVORITE app (Awesome Note, which I use for organizing all sorts of information that I want to remember).

The other managing thing that I do that bothers me ... makes me worry that folk might think I am losing it ... is that I have a process, procedure, and/or place for everything in my household and for all of my chores.  For example, my spices and herbs are all organized in a way that makes sense to me.  When Becky was here, she, understandably, put a few jars back in the wrong place.  That left me hunting all around for them and pulling bottle after bottle down and putting them back up.  It is hard for me to remember what I just did, so I would pull the same bottle down several times.  I ended up emptying the shelves and putting them all back, one at a time, where I am used to each one being.

And, well, there was the whole incident with folding the blanket the wrong direction ... not in the same orientation as the bench so as to ensure it remaining on the bench when I am tugging at one of the other blankets.

My medications are all in specific places, because there are so many bottles that I end up doing the same thing as I did with the spices and the herbs.  But it is more than just bottles ... everything in the house has a specific place.  Woe to anyone who tries to help me put things away and not put them in their place!  Primarily, this is because I will not be able to find them again!  But, to be honest, partially it is because of the visual rest that I crave, that I need with this annoyingly nerve-damaged-and-thus-anxious-body-and-mind I have.

Today, I decided to finally tend to the handle on the refrigerator freezer door.  It has been jiggling for quite a while.  I believe this is because I lean on the handle to hold myself up a bit whenever I am using it.  Clearly, I use the freezer door (fetching ice packs) far more than the refrigerator door since it is looser.  I lean on everything.  SIGH.  I am trying to train myself to not lean on the microwave handle, since it is attached to the cabinets above the stove.  And I am trying to train myself to stop leaning on the kitchen faucet handle since it is probably not designed to hold up weak and weary ill folk named Myrtle.

Anyway, with the handle ... I had put off tending to it, but doing so was easy peasy.  You see, I have this flip-top, pasteboard box (sized for 4x6 index cards) that is filled with snack-sized Ziploc bags.  Each bag contains the assembly instructions and the tools that came with every thing in the house that I had to put together myself.  I simply went down to the utility closet in the basement, opened the antique wooden cabinet that was left with the house, pulled out the box, carried it to the laundry area counter where I could see better, searched through the bags for the one marked "refrigerator," took it upstairs, used the allen wrench to tighten both handles, went back down to the basement, returned the bag to the box, and returned the box to its specific place on a specific shelf in the cabinet in the closet.

You could say that it is good to be so ... regimented ... since I could tell someone helping me exactly where to go for the box of assembly tools.  However, I would probably worry that the person helping me would not return the box to its exact place on the shelf.  Why is placement so important?? Because I can stare at something in the wrong place and not see it because it does not make sense to me that it is not in the proper place.  This is especially problematic with my medications that are almost all in identical bottles.  SIGH.

This, by the way, is why I was so very annoyed about the twine I lost.  I mean, it should have been in the basket on the second shelf in the utility closet right next to the center post.  It could have been in the bottom drawer in the kitchen (where the new twine is now to keep it clean since I also use it to tie up herbs for drying) or it could have been in the top left-hand drawer in the dining room built-in since that is my utility drawer with pens and scissors and rubber bands and twisty-ties and the small measuring tape and the small screwdriver set and Amos' medicine and the games I like to play the most (so no trip to the basement if someone is willing to play).  Or it simply could have been (forgotten) on the counter in the garage where I was last after using it.  However, the twine is nowhere.  Months and months and months of searching to no avail left me having to purchase a new spool of it.  SIGH.

Even Amos has his "place" now, thanks to Becky making him the resting pads.  He is much easier in his canine self whenever I am in on of the four main locations in which I putter about the house.  This  is because each one of them has a resting pad for him to rest upon as I am working.  Before having his own "place," Amos would fret, moving here and there and whining for me.  Now, he curls up and waits rather patiently.  Becky is making one more ... so that Amos has his own place when I am lying on the bathroom floor.  We both cannot wait for that one to arrive!

I was talking with someone this week about how my entire life is managing my physical ailments and managing my cognitive failings and managing my household chores and managing my PTSD puppy dog and managing my own PTSD and managing food preparation and managing medications and managing medical appointments.  All I do is manage.  I discover breakdowns in my abilities and try to mitigate them with a new process, procedure, sign, alarm, automated email, etc.  It is exhausting to do and exhausting to consider the scope of just how much managing it takes for me to be ... still independent.

During an appointment this week, the alarm for watering the plants on the front porch, the alarm for feeding Amos his dinner, the alarm for getting up and moving every two hours, and two alarms for medications went off.  The person I was seeing for the appointment was a bit ... distracted and then worried.  She asked how I was going to remember all the things I had missed while I was with her until I got home and could do them.  I said I probably wouldn't.  I would forget.  [I did.]  Then I said the upside was that I am learning to not punish myself for forgetting.  SIGH.

I worry.
I live in fear, actually.
I fret that someone is going to notice just how much managing I need and cry foul.

My latest managing??  My Fitbit dongle stopped working so I no longer get the automated email notification.  So, I set up an alarm to charge it every Friday night.  However, most of my alarms need to be doubled or tripled because I will often forget what I am supposed do to after swiping off the alarm.  I forgot.  Again.  So, I just, as I am typing this, added a repeat for tomorrow so that if I do not get it done on Friday, the charge can be done on Saturday before the battery is completely dead.

When I was talking about the managing, I muttered that it bothers me that I do not get any credit for the prodigious amount of managing that I am doing.  I think that is why I like the Fitbit.  I get credit for every step that I try to take in a day!!

If only it was not one more thing that needs to be managed.
SIGH.

A new recipe...

I have been wanting to explore curries (hence the Split Pea Curry recipe), so today I utilized ingredients I had on hand to make a yellow curry: Coconut Chicken Curry.

Mmmmmm!

Now, this photo was taken before I removed the lid to reduce the sauce a bit more.  I think the potatoes cooking down make it more a gravy than a sauce.  And, for the record, yellow curry paste is SPICY!  To me, the coconut milk helped cut the spiciness, so my mouth radiated heat, but I was not uncomfortable after finishing my bowl.  I was, very much, wanting a second one!

I bought the yellow curry paste on Amazon a while ago (I got it for half the price as an add-on item) ... as in last year ... for a recipe that I "lost" and thus never opened the container.  Inside the container is a vacuumed-sealed packet of paste, instead of how it is in the jars of green and red curry paste that I can buy at Target or Walmart.  It is also, interestingly so, not exactly yellow ... although the end result looks yellow, right?

All in all, I wanted the distraction and ... rest ... of trying out a new recipe.  I was tickled that I could do so without having to go to the store (still able to maintain my austerity plan).  And I was inordinately pleased with how it turned out.

Amos was, too!
Such a spicy tongue that puppy dog has!!

A sign...

My neighbor has started buying me a gallon of milk whenever she is at the grocery store.  It is the absolute most helpful act I could think of for her to do and it was not even my idea.  Now, not only do I have a continuous supply of milk (translate that an absence of milk panic), I do not have to drag myself out to a store on a regular basis!

Tonight, when we met at the fence for her to give me the milk (yes, she very properly buys the gallons with the latest date on them), she look at my hand as I took a hold of the jug and said, "Uh, oh.  The ring.  A bad day?"

It was not until that moment did I realize that wearing the most wonderful FROG ring could be a great way of letting folk know that I am struggling.  I put it on during a particularly violent bout of nausea in the wee hours of the morning and have spun it absently about my finger throughout the day.

I have been thinking....

Anyway, I made some cheddar biscuits yesterday.  I had already put the first blob of batter on the medium bar pan when I realized it was not big enough to do row of eight biscuits.  So, I decided to simply make six large biscuits.

These are from a mix.  When it comes to biscuits, I have the decided opinion that if your name is "Myrtle," using a mix is a much more prudent course of action than trying to make them yourself.  What I found odd about these is that they are a "cheddar" biscuit mix, but you have to actually supply the cheddar cheese yourself.  So, really, does that not make them simply a regular biscuit mix???  It is the Red Lobster brand ... something that fell into my cart one day when I was not looking.

Today, I tried Pioneer Woman's Steak Bites (sirloin tips) recipe.  I still would like to find ways of making steak, especially since I still stink at grilling it.  This was a simple recipe (so I am not sure I will retype it on my recipe blog) that was easy to execute.  Having watched oodles and oodles of master chef steak-making videos, I did heed the advice I had garnered with them and rather liberally salted my bits of steak.  I hesitated half way through that process, but plowed ahead, thinking of all the admonishment about the need for salt when cooking steak.

The key to the recipe is to use a REALLY hot pan and to wait until the butter has already browned.  I was pleased that my bite bits turned out beautifully.

On her recipe, Pioneer Woman notes that you could use red wine to deglaze the pan and make a sauce.  Not having red wine, I used Miren (sweetened sake...rice wine).  Mmmmmmmm!

Amos was so enamored with the sauce that he carried around the dipping bowl for quite a while, even though he had licked it clean.  I don't blame him.  Honestly, I would have preferred that I were the one licking it clean.  Mmmmmmmmmm!

Becky blogged today!!  I like her post, in part because she read some more of the Living with Bob blog about life with dysautonomia (which warmed the cockles of my heart) and in part because she copied and wrote about one of my favorite recent passages that Michelle wrote.  I liked Becky's take-away from the passage.

After the record-shattering rainfall we had in the spring and early summer, it has become rather dry here, despite periodic rain and all that STINKING HOT STEAMY humidity.  Just looking at this makes my gardener's heart hurt.

Last night, at first, I was beneath my weighted blanket and Amos snored next to me curled up in his weighted blanket.

It is hard to tell, but here Amos had woken, crawled into my lap to give me some kisses, and then fell back asleep sitting up against me, as I was typing.  I covered him with his blanket and savored the heavy, snoring, warm lump of puppy dog and two weighted blankets in my lap.

I'm still wearing the ring.  I dare not sleep in in lest I loose it.  But I have wondered:  Would the FROG ring bolster the spirits of my sleeping self the way it does my wake self???

704

704.

Seven hundred and four is a number that I wish the world would rally around and the media would plaster on every screen possible until 704 became 0.

According to the government of Paraguay, in 2014, 704 girls between the ages of 10 and 14 gave birth.  Child sexual abuse is a profound problem in Paraguay, as it is everywhere.  And the world has made gained little ground in stopping it.

The article linked above, to me, has the wrong focus.  It contrasts the pregnancies in the same age range in the UK with those in Paraguay, noting that the majority of the young girls in the UK had abortions, whereas the girls in Paraguay are "forced" to carry to term given that abortion is illegal.

Pregnancy at 10 is most certainly devastating.  But so is abortion.  The focus should not be on abortion verses delivery but on STOPPING CHILD SEXUAL ABUSE in the first place so that there is not either or.

Recently, Angela Jolie Pitt, actress and human rights advocate, recently called on the world to essentially do a better job at addressing the threat of ISIS.  In doing so, she deplored the unprecedented escalation by ISIS of the use of rape as a key weapon of war.  Day in and day out, women and girls are raped and sold by ISIS.  A practice so commonplace in war zones now as to barely cause a blip in the news.  That rape is an accepted and frequently used weapon of war is so egregious I cannot understand why the outcries against it are not flooding the proverbial airwave.  But, apparently, a lion's death is more important.  More meaningful.  More deserving of discussion and advocacy and policy change.

I think about my best friend's fifth grade daughter having a baby and my stomach churns.  Yet, as faithful and devout Christians, I cannot fathom her parents making the choice for her to have an abortion if she were pregnant.  See, even I focus on the either or ... should the girl have a baby or have an abortion.  Even I.  My stomach churns even more.

What saddens me is that the debate really is for-or-against abortion, rather than making the reporting of child abuse both mandatory and easy world-wide, of having sentences/repercussions be so frighteningly and overwhelmingly punitive so as to cause an abuser to stop and think before crossing the line with an act that can never been undone and/or prevent repeated abuse by an abuser.  If children really are our future and our most precious resource, why does not every single country have a national database of child abuse and sexual abuse perpetrators?  Stopping child abuse is not a state right or a state problem.  It is not even a national right or a national problem.  It is a WORLD problem.

704.
Almost two a day.
And that reported abuse is only a fraction of the actual crimes committed.

I weep at the knowledge that one of the things in common among humanity in all countries is the silence that cloaks child abuse and the utter failure, even in 2015 to protect children ... and adults ... from sexual assault.

In other words, the culture we all share is a culture of rape.

RUOK?...

I am on my eighth bowl of vinegar and soap.
The fruit flies are still ensconced in my home.
SIGH.

Today, I was able to take care of some niggling things:

• put a pen and small notepad in the "medical" basket on the table by the couch (several times I have found myself writing confirmation codes or appointment times on my napkins when sitting on the couch or in the GREEN chair ...  I used my father's vintage IBM Think notepad)
• logged on to Sprint to block the third scam number from Buford, GA ringing my phone
• verified credits from three years of fraudulent service charge from domain company, which I am thankful they actually gave back the money since I somehow missed the charges on my credit card until this year
• paid medical bills (using up the domain credits and then some)
• calculated how much I have left for the budget cycle ($101.69) ... 16 more days to go.
• updated my medical expense spread sheet
• updated Firewood Man's spreadsheet (I am working toward a plan of trying to pay an annual monthly average instead of direct costs to even out his expense over the course of the year ... it looks like a budget of $70 a month for mowing, edging, weed control, snow removal, and firewood will work)
• ran the dishwasher and emptied it
• used the special stone cleaner on the kitchen and half bath granite countertops
• used the special cleaner for my ceramic top stove
• Swiffered the first floor
• scoured the main bathroom
• tried to vacuum the stairs (fainted and fell back down them, along with my beloved Dyson)
• did three loads of laundry
• hung laundry on my new clothesline (!!!)
• took out the trash and recycling to the bins in the alley
• filed the paperwork that was filling my "inbox" in the basement
• brewed more tea (vanilla caramel this time)

When Becky was here, I asked her for help with two items that I simply cannot do by myself:  1) trim the hair between Amos' pads on his paws and 2) vacuum the servant's stairs.  We did not do either of those tasks.

The Amos' paw trim is a two-person job because he is most wiggly as he vehemently protests having scissors near his person.  With the curls growing long there, he is constantly chewing on them to clean them, especially working on the tree sap that he picks up as he meanders by the evergreens.

The servants' stairs is difficult to do because it has a turn in it, with a bit of a platform, and the Dyson, though lightweight, is hard for me to carry, much less hold whilst I am vacuuming.  The ugly-to-me shag carpet hides a LOT of dirtiness, but it has reached critical mass!

I think that if I ever have visitors willing to help me come again, I not only need to ask, but also, perhaps, post a list of requests on the refrigerator.  You see, if I ask once, especially if it is something I doubt anyone would want to help me with, it is rather difficult for me to ask a second time.

The spate of productivity is a direct reflection of just how ill I was this morning.  In that wretched hour between 4:00 AM and 5:00 AM, I was hit by a tsunami of violent nausea.  While the Zofran eventually worked, I refrained from eating my usual breakfast because I was still so ... digestively fragile.

I also read ...several times ... and savored Michelle's blog post about the R U OK? day that Australia has.  She writes so bluntly and clearly about the struggles oft faced by those living with chronic illness.  I fervently hope that those of you who read my blog will read her post below:

Thursday, 10 September 2015

Life with Chronic Illness is Incredibly Stressful. Time to ask the Question: RUOK? 

It's RUOK? day today in Australia and it's time to get involved. This brilliant initiative began in 2009 and has grown every year since. As the site explains:

"R U OK?Day is a national day of action dedicated to inspiring all Australians to ask family, friends and colleagues, ‘Are you ok?’ By regularly reaching out to one another and having open and honest conversations, we can all help build a more connected community and reduce our country’s high suicide rate."

"Connection and open, honest conversations are good for our wellbeing – whether or not we’re struggling with a problem. It helps us to feel valued and supported by the people around us. There's also an emerging body of research which links supportive social relationships and a sense of social connection with protective factors in suicide prevention."

As I wrote here the incidence of mental health issues such as depression or anxiety, are very high amongst those who live with chronic illness. As a group those with chronic illness are faced with illnesses and disability that are measured in years or, in some cases, life times. The physical toll is often high, but it is the mental and emotional toll, which often goes unknown by all but the sufferer, which frequently creates the greatest burden. It is important that we start the conversation about the mental health burden of chronic illness, particularly when unlike many of the chronic physical conditions, it can be addressed successfully with appropriate support.

The issue is complex. Stress is often multi-factoral and many are reluctant to discuss their difficulties for fear of being perceived as weak or the stigma associated with mental health issues. Dysautonomia is an umbrella term for a complex series of disorders that arise from the malfunction of the autonomic nervous system. Some forms are rare, but even amongst the more common forms, they are rarely discussed and not easily identified. Patients often experience long and stressful journeys to diagnosis. Even once diagnosed, the complexities of the disorders and lack of information and treatment pathways lead to ongoing high levels of stress. Add to that the severity of sometimes disabling long term symptoms experienced by many and it is not surprising to find that if actually asked, many patients will respond that they may be functioning but they are not necessarily OK.

Those with chronic illnesses that are rare or poorly understood such as the Dysautonomias, often face a long and soul crushing journey to diagnosis. With symptoms that are frequently vague or fluctuating, patients are told "it's all in your head", "you just need to get out more", "you're depressed". Many are faced with insinuation or outright accusations of malingering or lying. The story is repeated again and again on forums around the world. Even long after diagnosis these words continue to haunt patients who continue to hide their stress levels for fear of reignitig old accusations.

Being a chronic illness many find that their friendships and social relationships fall away over time. Friends who initially came around with a casserole or offered to take a child to school, call around with ever decreasing frequency or, simply disappear. Social isolation is a huge issues for many. Especially those patients in isolated or rural areas, or those in countries where little is known of the disorder. Even in larger cities and centres where there are more patients, it can be difficult to organise face-to-face meet ups with patients who are fatigued, have mobility issues and, thanks to the quirks of the disorder, may have to cancel engagements at the last minute. Whilst fellow patients may understand this, often friends and family do not and social invitations slowly evaporate. In my own case, many friends I thought would always stay by my side disappeared as my ill health increased. My circle of friends decreased over time until now I can count them on one hand. Although I would say chronic illness does aid in rapidly sorting the wheat from the chafe and whilst I may not have the same quantity of friendships the quality is far better. (online friendships have been a saviour, but that is another post).

Intimate relationships change. Husband and wife, becomes carer and patient. Trying to maintain a marriage in these circumstances can be very difficult without dedication. Often outside guidance and counselling is required to traverse the new and changing relationships. Marriage breakdown is common and even dating is often difficult. The strain of constant illness, inability or infrequency of intimacy, financial concerns, difficulty in maintaining roles such as house keeper, parent or cook can all mount to create problems in relationships. Additional difficulties can arise when a partner requires aid with personal care needs such as showering and toileting. Where does the role of husband stop and carer begin? Navigating these changes can be very difficult for couples many of who attempt to do this in private for fear of embarrassment or feeling like a failure. 

Parent/child relationships also change. Adult children may be forced to move in with aging parents. Conversely, young children can become carers for their adult parents. Parenting with chronic illness is difficult. Being able to care for small children when you can barely stand or are worried about passing out can be both heartbreaking and dangerous. Guilt is common. Even when the children enter the teenage years they may be forced to care for sick parents or are unable to socialise with friends and relationships can become strained. 

Many teenagers with Dysautonomia are unable to go to school or participate in regular teenage pursuits such as parties or sports. They are reliant upon parents at a time when they are normally asserting their independence. Again conflict can arise and strain exists for both patient and carer.

Work commitments are often challenged and unemployment is not uncommon for many patients. This creates not only a financial burden to families, but also a loss of identity. The first question asked at social functions is often "what do you do?" For someone recently unemployed this can be difficult to deal with and often those asking the questions are stumped as to what to ask next. For many, a career equals identity. We understand when someone says they are a doctor or teacher. There is a whole social schema that goes with each label. For many, myself included work was a joy. After years of study and working hard I had a job that I enjoyed and felt was making a difference in the lives of others. To give that up after a year of battling increasing Dysautonomia symptoms felt like the ultimate surrender. I felt like a failure. Added to that was the guilt of the financial burden I was placing upon my husband which was and continues to be high. 

Independence is often the first casualty of chronic illness. Simply being able to do the grocery shopping by yourself can be difficult. Many patients who experience frequent syncope are no longer allowed to drive which leaves them reliant on others for transportation. Being able to garden or go to the movies can be a Herculean task. A patients' identity can often seem lost with each small piece of independence that disappears. Spontaneity is no longer possible. A friend calling over for a quick, unexpected coffee can be overwhelming. Patients need to prepare for outings and entertaining through rest, medications, extra fluids and salt, after which they still may be unable to participate thanks to the unpredictable nature of the disorder. It is the normal social situations that others take for granted, particularly the small things such as going to a cafe, that are frequently reported as most missed by patients. And the inability to do such simple things often serves to highlight what they have lost.

Cognitive problems are also common in Dysautonomia thanks to poor cerebral perfusion, fatigue and medication issues. Patients are embarrassed by lapses in memory, inability to complete simple tasks, read a book or follow a conversation. For many, on a bad day, speech is impaired both cognitively and mechanically. Many withdraw from social interaction as they are either self-conscious or simply unable to take in all the competing information.

All of these issues are on top of the physical symptoms of the disorder with which patients contend with 24/7 (tachycardia, bradycardia, hypertension, hypotension, syncope, pre-syncope, weakness, fatigue, poor thermoregulatory control, gastrointestinal symptoms, urinary frequency, seizures, to name but a few). Whilst the physiological symptoms of Dysautonomia can be difficult to live with, it is the impact that they have on daily life, the social, psychological and emotional issues that many patients find the most challenging. 

The support for those suffering chronic illness is greatly lacking. Care fatigue ensues amongst friends and family as time passes and a patient either doesn't get better or, gets worse. Chronic illness doesn't fit into the normal sick paradigm associated with acute illness. There is no easily identifiable illness or injury, no clear and distinct treatment path and frequently no identifiable resolution after which the patient can resume their regular role in society. This leaves chronic illness patients vulnerable both medically and more importantly psychologically.

People stop asking if you're okay. As one of my readers wrote, "when I asked her why she didn't call to ask how I was, she responded "it's just your normal. I thought you were used to it"". Chronic illness patients are frequently forgotten until a crisis occurs. We develop means of coping, putting one foot in front of another, because there is no choice. There is no resolution as the disorder is chronic, you must learn a way to cope. Patients may smile and laugh , because they have learnt to find humour in the small things, but that doesn't mean everything is okay. It doesn't mean they are okay. It doesn't mean they are coping. Many are barely holding it together. Being strong for years on end is difficult. Sometimes we all need to be asked "R U OK?" 

Please take the time to ask the people in your lives R U OK? If you have someone in your life living with a chronic disabling illness like Dysautonomia take the time to truly ask "R U OK?" It wont take long and they will appreciate that you care. You don't have to solve their problems, just listen and be there. Start the conversation. 

If you are unsure how to ask someone, RUOK? Day has some fantastic resources available. 

Importantly, if you're the one who isn't OK, but you're not sure how to tell someone or ask for help, they have information and resources here. 

You don't have to be in Australia to participate. Nor do you have to stick to one day a year. You can ask "R U OK?" anywhere, and any time. Start the conversation and change a life.

Cheers Michelle :)