The things you endure...

Crushing headaches.
Nausea.
Tingling lips.
Weight loss.
Drowsiness.
Jerking limbs.
Yawning.
Gagging.
Dry mouth.
Numbness.
I Don't Care.

Those are the symptoms I've been battling for 11 days now.  This new drug packs a wallop.  Friday, I will be doubling the dose up to the lowest therapeutic dose for neuropathic pain.  Then, it will be a couple of months before I know if it will make a difference with the pain in my hands.

61 days.
Shock. Schock. Schock. Shock. Schock. Schock. Shock. Schock. Schock. Shock. Schock. Schock.
Unceasing.

Frankly, after all the weight gain with the gabapentin, I do not mind the weight loss.  However, I am fairly certain that it might be labeled a bit of a concern.  I am not concerned because I have LOTS of weight to lose.

I also do not mind the drowsiness in that I am sleeping longer segments at night.  I very much dislike when I awake after just an hour or ninety minutes of sleep.  Sometimes, now I am sleeping three or four hours before waking and needing to fetch fresh ice packs.

However, the drowsiness in the late afternoon/early evening means that I HAVE to take a nap.  That's because the yawning causes me to gag.  Every. Single. Yawn.  It is very, very, very difficult to continually fight back vomiting with the constant yawning.  It is easier to just give up and sleep.

The rest ... I am just trying to endure.  The hardest is feeling so numb and not caring about anything.  It is difficult to think, to talk, to do.  So, I haven't done much.  And what I have done has not gone so well ... especially my Christmas treat packages.  SIGH.

The things you endure for even the merest hope of help with your pain.  In my opinion, chronic pain is impossible to understand unless you live with it.  And I do not wish such knowledge on anyone.

Symptoms and symptoms...

In the absence of data that an MRI could provide and on my 50th day of constant shocking in my hands, my GP decided to add duloxetine for pain management.  I have been of two minds about trying the SNRI drug.  It is an antidepressant, after all, and there is a stigma about taking those meds in the medical community ... yet another reason to be labeled a "head case."  But the pain in my hands ... being shocked constantly ... is driving me nuts.  I agree to try the medication.

It's been five days and I wouldn't think that it could be affecting me this strongly, but what I am feeling my therapist says is clearly the duloxetine.  I am numb and basically do not care about anything.  It is a weird, weird state to be in, at least it is to me.  I have lost a bit of weight because I have absolutely no interest in food.  Me!  Me!!  That alone is shocking.  Of course, though, I don't mind the weight loss after all the gabapentin weight gain.  I just ... I just don't like the me that I am right now.  I am hoping this passes.

As far as side effects, the nausea is different from what I usually experience.  A lot more vomiting.  I have crushing headaches.  I have random shocks in my body.  And my lips are tingling.  Fun times.

In reading about duloxetine's help with the neuropathy, I need the dose to be at least 60 mg.  My GP said that I could go up in two weeks, but I'd rather not pay for the medication twice in a month.  My therapist suggested that I take the full 30 days, too.  It is a toss-up between symptoms of side effects and symptoms of neuropathy.  SIGH.

I tell you, the combination of brain fog and IDON'TCARE is making life hard, especially trying to take all of my meds at all the time slots I have throughout the day.  I haven't done much since starting the medication.  Well, other than going to appointments.  I forgot about a prescription at Walmart that was only partially filled, but it seems Walmart also forgot about it.  So, I need to go fetch that.  I had planned to not go out until next Tuesday, but I suppose one trip will be fine.  I am just not up for driving whilst in this IDON'TCARE state.

My sister completely spoiled me for Christmas and her present arrived today.  Normally, I would have already had it put together so that I could photograph it for the world to see, but IDON'TCARE and I am cold.  I am so very cold this winter that I am contemplating throwing my budget out the window and turning the thermostat UP.  I already did that.  I went from 55 to 60 degrees.  But I am still so very, very cold.  Whenever my realtor comes, I turn up the thermostat for her, to 65 degrees, and I feel much better then.  I just don't know how much more that will make my heating bill each month.  However, I am not sure how much more cold I can take.  In any case, I am hoping to put together my gift on the morrow.

For now, I am trying to think about something my therapist asked me to consider:  not saying that I was bad, but that I was terrified.  I was telling her about what happened during the blood flow testing.  I was thinking about how I was not being a good patient and she asked me to explain that.  I said that  I was shaking and crying and pulling away from the tech's touch, making things harder.  But my therapist responded:  you were terrified and lost back in the past.  She said that I was brave for staying and that she was amazed that I made it through that.

I have been turning that over and over in my mind.  I wasn't bad; I was terrified and my responses were natural and understandable.

But then we talked about how I coped with all the disgust and fear that overwhelmed me afterward.  I cut.  It is so hard for me to think about that.  I hate how effective cutting is at coping.  But my therapist insisted that there is no shame in that.  There is no shame in trying to keep myself safe in a way that is less destructive than drinking or drugs and less permanent such as suicide.

I cut and it is as if I am cutting through the maelstrom of emotions, stilling them.  The pain brings all my focus away from what is tossing me about, leaving me desperate for escape.  Then, the wound serves as a ... tool ... for days and days afterwards.  If I become overwhelmed again, I can just press on it and let the pain calm me again.  My therapist said that must be comforting to me.  I do not think that I have ever given thought to that, but it is.  I do not cut all the time and work hard not to, but I as much as I loathe that I have done so I welcome the help when I have a wound on my thigh.  SIGH.

I talked with my GP about it and she asked me to show her.  It took me a while to do so, but I did.  I was surprised at how ... non-plussed she was.  She asked if we could talk about it another time.  I agreed to that because I am trying not to be so ashamed.  That's why my therapist's comments were such a relief, how adamant she was that there was no shame in cutting.  And that she absolutely believes that one day I won't need that Big Gun coping mechanism.

It was a weird, weird conversation to have being so numb and in such a state of IDON'TCARE.  But I suppose she is used to someone trying to acclimate to an antidepressant.  I asked her what happens to someone who takes an antidepressant who isn't depressed.  I've never been diagnosed as such and she doesn't believe that I am.  She said she didn't know.  I do worry about that, especially with the IDON'TCARE permeating my every existence.  But I would really, really, really like an end to the shocking in my hands.

I do welcome the numbness, just now, and the weight loss, for sure.  But to have no interest at all in food?  Cooking has been the only thing that was moving forward in my life, the only area where I have been able to learn and to progress.  And, my goodness, with all the nausea I battle each day, I need my interest in tasty food returned!!

So which symptoms do I choose????

Wretchedness...

Yesterday, I woke early to a phone call canceling my MRIs scheduled for the 20th.  I have been so very worried about having my pacemaker turned off for them that a part of me was instantly relieved.  That is, I was so until I learned why my appointment was canceled:  my pacemaker is not rated for MRIs.

When I was learning about the model I was getting, I specifically asked about MRIs because I have them regularly. Well, I had them regularly until I started avoiding them a few years ago.  Avoiding neurologists, rather.  I asked several times in my nervousness.  And yet somehow my leads can be in an MRI, but my pacemaker itself cannot.

I am overwhelmed.

Trying to wrap my mind around this news—news that basically means that I have to have pacemaker surgery again if I want to have an MRI—I went to my blood flow study.  I was told it was an ultrasound.  I assumed that it was something akin to the last blood flow study that I had.  When I arrived, I asked to speak to someone from the pacemaker clinic, because I was absolutely certain the news that I had received was wrong.  Long story short, it was not.

Reeling, the tech told me that I would have to be unclothed, in a gown, would involved my groin and pelvic region, and would take two hours.  I started melting down.

My choice was to leave or to stay.
Leave and not have the data my cardiologist wanted.
Stay and have my PTSD triggered.  Something fierce.

I chose to stay.
I am still triggered.

Afterwards, I thought to cheer myself by getting a Christmas tree.  Only the JERK who did the fresh cut keep cutting and cutting and cutting.  I tried to stop him, but he ignored me.  Rather rudely.  You  know, my being a female and all.  I paid for the tree and brought it home and had an asthma attack carrying it inside.  All before I realized that the bottom of the tree was now so short it would not fit in my stand or pretty much any stand without pruning off quite a bit of the tree.  And, in the process of realizing this, my not-yet-two-year-old-metal-stand broke!

I thought about just ... well ... I decided to go back to Mendard's and ask for a refund.  This was, in part, because Taco Bell put onions on my no-onion bean burrito.  That has happened so frequently I stopped ordering my beloved bean burrito, an order I've been making for three and a half decades, but I just wanted one.  Only, I forgot to open it up in the drive-thru lane to see if there were onions.

I did receive a refund and thought about leaving.  My sister was on the phone and suggested I leave, if that was what I wanted.  She suggested that I just skip Christmas, with all that has been going on with me.  I thought about that.  But I do want a tree.  Although ... I'd like to decorate it the way I wanted, not with all the decorations I've been gifted.   I voiced that thought, since I will be alone this Christmas, and my sister encouraged me to just go look at trees ... and stands.

I choose a tree that was all wrapped up, not knowing what it looked like, because I knew I could easily get it in my car and I could get it into my house by myself with the bear hug method.  It is not exactly a Christmas tree shape, kind of skinny and leaning quite a bit, but it is my tree.  When I got fetched the stand from the attic, I grabbed the box with the tree skirt and the lights.

I thought I would like to decorate the tree with just my glass ornaments and the half-dozen from my childhood, but it is awfully difficult going up and down two sets of stairs.  I think I might just leave the tree as it is.  After all, there won't be any presents underneath it.  And it will be just me looking at it.  It look okay like this, eh?

Today, aside from wrapping the lights around the tree now that the branches have dropped down from being all wrapped up, I finished the frame for the stained glass window that I bought for my haven last March.  [Firewood Man never got a chance to make the frame, so I finally got him to bring me back the window and loan me his miter saw.]  The good news is that I finished.  The bad news is that I broke the second pane of glass again.  That's $28 down the drain!  ARGH.

I decided to just leave the back side open.  What I can do is caulk the top and sides of the frame once it is hung to keep the elements away from the back side of the window.  But I am hanging it on the side of the garage with a roof overhang.  It should be fairly protected.

Overall, I would give myself a C+ on this project.  Clearly my wood skills leave much to be desired.  My only final worry is that the frame will split when it is hung, since I plan to screw it directly into the garage wall.  I have to have help with this part, so maybe the other person (I am assuming/hoping Firewood Man can help) will be so skilled with drilling and screwing that the frame will be fine.  I would like it hung as soon as possible, even knowing that I won't be able to fill the screw holes and paint them until next spring.  I just want to be able to see how my vision for my haven turns out.

I will admit that it took me well over an hour to figure out how to use the glazing points to hold in the window and the pane of glass I have in front of the window.  The way I kept trying to put them in was with the bent pieces parallel to the frame pointing down, as if they were to slip between the glass and the frame.  What you do is have those bits pointing upwards, so you can use them to tap the pointy bit in until those bent prongs rest up against the frame.  It was ever so much easier to put them in when the glazing points are in the right direction and orientation!  SIGH

With the frame completed, I tortured myself on the recumbent bike, showered, and built a fire.  I spent the entire evening clutching Amos and roasting myself before the fire.

I am still overwhelmed.
I am still triggered.
I am still weary of the wretchedness of this life of mine.

Start and stop...

Wanting to DO SOMETHING yet again, I got everything ready to continue working on the frame for the stained glass window.  From the garage, I fetched the two glass panes, the stained glass window, the under frame, and the staple gun.  From the basement, I fetched my drop cloth, pliers, primer, paint, stir sticks, paint triangles, paint brushes, liquid nails, and the doohickey you use to apply sealant or construction adhesive.  It was a lot of work to get everything set up.

I needed to adjust the inner frame, so I pulled out all the staples on the two left side corners and repositioned that piece.  Then, I stapled it back into place, and I added staples to both sides of all four corners.  Finally, I added staples to the back side of all four corners of the outer frame.

After checking and double checking that I could move the glass and the stained glass window in and out of the inner frame, I went to glue the two frame pieces together.  Sadly, the liquid nails had hardened.  It was too old.  And I had broken the 6th rule of construction projects:  Wait until the project is done before making your returns.  I bought a new tube of liquid nails, found a tube in my basement, and then returned the new one when I bought the second glass pane.

The pane of glass that I broke today.
SIGH.

I wanted to SCREAM.  There was no way that I was going to go out and fetch more liquid nails because I went to therapy today.  I have a test on the veins in my legs tomorrow.  And I have another doctor's appointment on Friday.  I can possibly stop by Lowe's tomorrow.  Tonight, I just have to wait.  Be patient.  I stink at that when I want to DO SOMETHING.

Since the balmy weather finally fled tonight, I decided to have a fire and concentrate on not castigating myself for breaking the pane of glass ... for wasting $14.  I am really, really, really tempted to not have a pane of glass in the back, but I do still think that having the stained glass window sandwiched between two panes of glass and sealed with clear caulk  (ah! ... doohickey = caulk gun) is the best way to protect the stained glass window outside.  So, I will be buying liquid nails and yet another pane of glass.  SIGH.

It was rather frustrating to start working and to find myself abruptly stopping.  It is not that I want to finish the project NOW, because I am not going to be able to install it without help (translate that:  without Firewood Man's drill).  But I did want to make progress.  I was hoping to get the priming done and one coat of paint.  But I do not wish to prime until the two pieces are glued together.  Or paint.  Mostly, this is because I need to be sure that gluing the pieces together doesn't make the window no longer fit into the inner frame.  Maybe that is a ridiculous worry, but it is my worry.

The fire?  Well, that was just lovely!  Firewood Man was not able to bring more wood for a couple of weeks and then we had this crazy insane balmy weather.  But tonight we had bitter cold weather due to the wild winds that started yesterday.  So, I was able to roast myself before the fireplace.

Here's a tip for you:  Don't roast your feet before a fire if you are wearing Birkenstocks.  The soles will come unglued from the heat!  Yep, my feet are so cold from Reynaud's that the heat can be intense enough to melt shoe glue and yet not even feel warm to my icy skin!!

I'm colder this winter already, but I do not know why ... unless really you blame my wonky nerves and the autonomic process that keeps you warm.  Last year, I kept the house at 55 degrees.  This year, I had to up it to 60 degrees.  And at that I am still very, very, very cold.  When my realtor comes over, I bump up the heat to 65 and only then find the temperature bearable.  However, I cannot afford keeping the house balmy this winter.  Or any winter for that matter.  But especially this winter.

Despite the cardiologist's certainty that I have venous insufficiency, I am expecting the test results to be normal tomorrow.  I still think that whatever's going on has to do with my heart.  Of course I am probably wrong, given that he is very good at his job.  But I've finally got back to walking on the treadmill and the thing that I keep seeing is that I have breathing problems when my heart rate tops about the 130s.  On the recumbent bike, I just cannot get my heart rate up high enough.  However, it isn't just standing because I can walk at a lower pace and keep my heart rate around 120 and my oxygen sats drop to 91-92, but no lower.  Once I get over 130, my sats start dropping lower and lower and breathing gets harder and harder.  Something is happening.

Of course, to be fair, I will admit that I do not hold out hope that the high resolution CT scan will give any answers either.  Mostly, I think this because, with dysautonomia, normal test results are the norm.  That's why my bum kidney blood work was so surprising to me.  I am not looking forward to the next blood test even though I've gone down—again—on the amount of Celebrex that I take.

No, I cannot think of why my overall heart rate rose in September/October, but the higher it was, the worse the breathing got with any exertion.  High is not good for me.  Why? I cannot think why sometimes my legs go from being swollen to be alarmingly doughy.  But its randomness speaks more to dysautonomia rather than the valves in my veins.

But I will use the opportunity to practice medical optimism during the testing.  Smile and nod and look hopeful!  Hah!!  SIGH.

Yep.  I'll definitely be fetching the liquid nails and glass pane on the morrow.  That way, after the testing, I can distract myself by DOING SOMETHING.  From the testing and from the comprehensive physical exam I'm having on Friday.

Eight days...

I keep trying to write, only to find myself with nothing to say.  Or nothing worth speaking.

It's been a long, long week (or rather eight days), with a few bright spots.  One was getting my replacement refrigerator.  It arrived on Thursday, which made for a long, long day.  I had to empty mine and then re-fill the new one.  The good news is that the new one is much, much better than mine.  Small things, really, that add up to a BIG difference.

For one, there is an extra cubic foot in both the refrigerator and the freezer.  In the freezer, it almost feels as if there is two or even three.  Mostly, this is because of the second bin in the freezer.  Storing things in a bin, things that cannot be stacked easily on a shelf, multiplies space.  Also, the three bins in the freezer door are much deeper and have more space than I can think of how to use.

On the refrigerator side, the best news is that the light box that was at the front of the top of the refrigerator, blocking access to the top shelf is gone.  The light is now in the back corner.  And the top shelf is ginormous.  Every time I look at it, I am amazed anew at just how much space there is and that I never, ever have to tilt my jug of milk in order to put in on the shelf again!  Like the freezer, I have extra space in the refrigerator door bins.  Two are only half full.  Shocking, eh?

The less than good  news is that the two extra shelves in the freezer that I need to manage all my ice packs did not fit in the newer model.  I was able to take them from my original new refrigerator from five years ago and put them into the new refrigerator I bought a year ago.  But I am not able to put them into this one.  They are too narrow.  So, I had to spend far, far, far too much money replacing those.  You see, the side-by-side models only come with three shelves, thinking that you would want a space large enough for a frozen pizza on its side.  Well, yes, maybe, if you didn't have a neurological disorder that made ice packs one of your most prized and needful possessions.  SIGH.

Most of the last week was spent being ill or resting or avoiding my thoughts.

Firewood Man did finally bring me a load of firewood and he did the final mow of the year.  This meant that he also tended to all my leaves.  Well, except for the leaves from the ornamental pear tree out front.  Those are still on the tree!  This was the first year I didn't have to do the raking and bagging and I am deeply relieved and thankful.

I was able to prune the burning bushes for the year.  If I do not, they start growing up over the windows that are above the built-ins in the dining room!  Pruning is not so bad, but cleaning up is rather hard on me.  Too much bending over and getting up from a squat.  I also pruned the weeping cherry as best I could in case I am not able to get it removed.  It is still massive, despite having pruned enough for an entire yard waste bag.

I also worked on refilling my larder, which was getting a bit low.  I now have 10 different options in my freezer for meals and one dessert option.  I have been a bit lax on refilling those containers.  I would like to try a new recipe or two, but it was good to do a bit of cooking.

Finally, I started work on building a frame for the stained glass window I bought for my haven last spring.  Firewood Man hasn't had time to do so.  I spent a long time thinking about what I could make and asked to borrow his miter saw.  I have much of it done, but have not had the energy to pick the project back up.  I still need to work on the inner frame, how the window will be held in place. Then priming and painting.  But I have the outer frame done and ready to paint.  When it is all done, I will still need help installing it.

So, some productivity and some cooking and a lot of just ... being.

I've mentioned before that I wondered why the authors of my favorite dysautonomia blog stopped writing.  I get it.  Life becomes too overwhelming.  And there are no words sufficient to speak such a life.

Since I started therapy (for the umpteenth time) last April, all I have been doing is be overwhelmed.  I keep thinking that I am wasting her time because we just ... I just ... well, I spill out how I've been overwhelmed the intervening week and we never get around to ... the hard stuff. 

All I do these days is manage.  I manage pain and manage medications and manage symptoms and manage ... well, manage and endure.  For I was going to say that I manage my fear.  But I am not managing that.  Would that I were.  SIGH.

A difficult day...

Yesterday, I tended to the burning bushes in my back yard.  Thankfully, we've had a bit of a warm spell, so I didn't have to work in the bitter cold.  They held onto their leaves so very late this year!

They grow so well that I have to whack them back each fall.  The one year I didn't, they grew over the windows above them!

Whacking them back is not too terribly difficult with the electric hedge clippers ... as long as I do not cut through the power cord.  I've done that three times since owning them.  SIGH.  Not this year, though!

The hard part is the clean-up afterwards.  I used the blower, but it still meant a whole lot of bending over and squatting and standing.  Those two things are what make me faint the most.  If not syncope, then pre-syncope.  Imagine trying to do your yard work whilst battling to remain conscious the entire time.

Such is my life.

Today, I've been battling this terrible drowsiness and dizziness all day long.  I woke up around 1:00 in the afternoon, took Amos out, and then collapsed on the sofa for another three hours.  Then, I took my 4:00 meds, fed Amos, and slept for another two hours.  I took my 6:00 meds, struggled to stay awake until my 7:00 meds, and fell asleep.

I couldn't stay awake until nearly 9:00 in the evening.  That means I was sleeping, mostly, from 2:00 AM until 9:00 PM!  It was as if I somehow took extra of my nerve pain medications.  It's been the weirdest of days.

Amos, though, has been on his very, very, very best behavior.  Normally, when I try to sleep on the sofa in the afternoon, Amos is busy defending the homestead, which keeps me away.  Today, however, Amos was busy snuggling with his puppy momma.

I'd rather not crawl into bed, but it is past midnight (though I'll back date this to keep the entry on the right day for my remembering) and I don't want to stay up all night if I could actually sleep some before whatever bodily misery sets in in the wee hours of the morning.

This morning, I spent hours and hours yo-yoing with my blood sugar.  Crash-correct.  Crash-correct.  Crash-correct.  I loathe when my body does that.  Middle of the night crashes are bad enough, but they are almost unbearable when I cannot find a balance.  Each subsequent crash leaves me even more frightened and insensible.  SIGH.

Still, that doesn't explain why I couldn't stay awake today.  What a strange day after a rather rough night.  Still, there was Amos.  How blessed am I by my beloved Fluffernutter?

Another mistake...

I made a mistake.

I made a mistake that I think I should have known better than to make.  Sometimes, I can give myself a pass, thinking about the things I haven't learned or learned wrongly that I am trying to learn now.  Sometimes, I can by thinking about all the things in my life swirling around my head right now.  Even so, I made a mistake.

I really, really, really like one of the maids who comes to clean.  She is soothing to me, even though I am having strangers in my house.  Because of that, we chat.  We chat and I talk to her as if she is a friend ... or at least a work friend.  But she is not.

There has been some changes in the other women who come, and lately, that has been her best friend.  But that woman is not a good fit.  Things get missed.  I've been asked to check things over as each floor is finished.  I do.  And her friend doesn't not respond well to pointing out what still needs to be done.  This past clean, she had a small meltdown and her actions and words had me wanting to leave my own home.

I was up thinking about what happened two nights in a row before deciding to speak to the manager who manages my service.  She was kind and gracious and understanding.  She told me that there are some women who just don't fit and gave me an example of a much beloved maid who's also had clients who've asked she not return.  She said she would handle things for me, because I was worried about having the women I like coming learn her best friend isn't going to be coming back.

The mistake?  The maid and I connected on Facebook.

Yesterday, I saw her anger online.
I knew.
And then I saw her unfriend me.

It was a mistake to have made the Facebook connection because mine is a personal account, not one that is at least a mixture of personal and professional.  And this isn't a personal connection.  It is a professional one.

I made a mistake.

I made a mistake in treating her as if she were a friend.  I made a mistake in connecting with her on Facebook.  I made a mistake in not addressing the concern with her best friend the first time it came up in the house.  I was so worried about hurting this woman's feelings that I allowed for something to ... well, to worsen rather than nip it in the bud.  It was clear her friend did not want to be cleaning my house.  Her comments.  Her reactions.  All that she regularly missed.

It is my most fervent hope that this wonderful woman who has been on my team since the beginning  will still come to clean next month, but I have no real expectation that that might happen.  So, I have four weeks to rehearse having a whole new team to get used to coming to clean.  And to think about not using the time they are here as time to ... I don't know ... practice, maybe ... practice visiting.  They are not company.  They are there to work.

Excuse me whilst I go and kick myself in the backside a few more times.
SIGH.

Dream job...

[Expanded from a musing I made on Facebook last night.]

Last night, my sister and I watched "Hidden Figures" together, syncing up our DVRs.  It was interesting because she knew that our father was a part of the space program in a way that I did not ... at least not until his funeral.  She remembers him.

Watching the movie, she mused how she was ... well, she went to school with the children of astronauts and she couldn't understand why he didn't want to be one.  And she was angry that he didn't go on the summer vacations with us, but would stay home to work.

She realized, though, after his funeral and reflecting on this movie that my father was working his DREAM job.  He didn't want to be in space.  He wanted to help send others by getting to do the math! Such an engineer nerd he was!!

Her comment made me truly appreciate the scenes with the IBM machine that was brought in to the program.  No one knew what to do or could fathom the relationship IBM would have with the space program in the coming years.  But I knew that machine would bring my father into the fold in the years to come.  And, according to my sister, bring him to his BLISS.

There was a fundamental shift that took place in what I know of my father watching "Hidden Figures" with my sister.  She grew up with a different father than I did, having both more time with the two of them still together and the memories of my parents still being married.  It struck me that my brother had no memories of such, being too young when my parents divorced.  He has no anchor in his life of living with his father full-time.

And, to be honest, a lot of what I know of my father has been filtered through my mother.  As a child, I believed all that she said.  But I have come to realize the pain and bitterness of her divorce colored his view of him and the stories she chose to tell me.  She also played games with him using us children.  

Recently, I learned that one of the greatest griefs that my father bore was not having his children by his side at the funeral of his father.  It is a bitterness that still remains with my step-mother, remembering the agony of her spouse at that time.  I do not remember his death or the funeral.  From what I understand, instead of teaching us to love and support my father, my mother didn't encourage us to go.  I am not sure if it is possible to know if she prevented us, the way that my father and step-mother believed or if she merely allowed us to give into our selfish nature.  But she did fail in parenting us to support and encourage our father.  

My sister just had her birthday and I spent four weeks trying, long distance, to get my teenage nephews to have a card and a present for their mother.  I learned last year that they haven't done so, at least since her husband left seven years ago.  In those seven years, their father has not saw fit to teach them to be loving, supportive, and encouraging to their mother.  He has failed them as a parent and has missed such an incredibly opportunity to mold them into the men that they could become.

Watching the movie, I found myself wanting to weep—save for the dratted lack of tears in my eyes thanks to Sjögren's Syndrome—for the father that I did not know, the one I could have known if my mother had had a different response to her divorce.  It made me admire my sister all the more, for although she has had many opportunities to drag down her ex-husband, she has worked very hard to cover his failings as a father and bend over backwards, even to her detriment, to try to include him in their lives outside of his weekends with them.  I am envious of my nephews for that.

Anyway, when I first saw the movie, it gutted me.  For I know my father would have LOVED watching it and talking about his time when he joined the space program just a short while later.  Gosh!  I just know the authentic film locations chosen by the crew would have hand him waxing on and on about his work.  Though not always in the present during our movie-watching years, my father could recount the past with ease.  I dearly, dearly wish this movie had been made when he could have seen it.

Like I said. Gutted.

But, watching it with my sister, I was able to borrow a bit of her excitement of re-living that time with a dad who woke her up, scooped her out of bed, plopped her in front of the TV, and said, "You have to see this."

What? The moon landing!

I was able to share her joy of him as a father and I got to better understand what I learned at the funeral.  He worked on the space program, including the Mercury Program, the Apollo Program, Skylab, and the Shuttle Program.  At his funeral, I was astounded to learn all this and wondered why there was such a distance in our family, why so little is really known about close family members.  I also learned that he was well-known for mentoring young engineers and helping to guide their careers.  Men who remained grateful for his help their entire lives.

Such energy and purpose of those years!
So much pulling together the same oars, despite great obstacles!

"Hidden Figures" is a truly beautiful and profound movie, one made all the better viewing it through my sister's eyes.  Of course, now I need to watch "Apollo 13" again!

Colossal mistake...

I have been a fairly good homeowner in my adult life.  I was a great tenant, if I may say so, for I always left my apartments better off. I repaired things and left improvements, such as overhead fixtures in the bedrooms that had none.  I also added plants and flowers to the beds outside where possible.

My sister was talking about our father, an engineer, and it struck me anew just how much I learned from him as far as being a homeowner.  You stay on top of things.  You do preventative maintenance. You do not let repairs drag on and on.  My mother's addition to that mantra is that you don't wait to fix things up to sell the house—to make the house better for the next owner—because you should be fixing them up for yourself.  She also warns about looking for tolerances.

Tolerances are the thing that you put up with because the thought of changing them overwhelms you or wearies you or seems too large to tackle.  Only, once that situation or circumstance or _______ in your home has been remedied, you will have more peace and more energy from no longer consciously or unconsciously battling the toll of tolerating whatever it is that was niggling at you.  Sometimes tolerances are a small repair.  Sometimes they are simply rearranging furniture.  Sometimes a tolerance might be reorganizing a kitchen or painting a room.  The idea is to make your home work for you in all ways instead of having your home weigh on your spirit even in a small way.

For me, a tolerance I dealt with recently was three small things needing superglue.  It was not a hard task to tend to them, but in my mind using superglue is always, always a hard task.  Of course, I have switched to the Gorilla Glue brand of superglue and most often use their gel formula.  That does make things easier.  The bottle also never stop up, so you don't have to stick pins or nails through the top.

Anyway, I made a mistake in my oven.  And in trying to remedy that mistake, I made a colossal mistake in my oven.  In my new oven.  SIGH.

You see, for some reason, the newer ovens melt foil if you put foil in the bottom of your oven to keep it clean.  In part, this is because foil has been manufactured thinner and thinner and thinner.  But even if you use the heavy duty foil, it can melt onto the bottom of your oven.  Yes, I have foil stuck to the bottom of my new oven.

When the GE repairman was out to replace the broiler, he mentioned that if you put ketchup on the foil and let it sit for a couple of days it might get up the foil.  Scary that thought.  But I decided I had nothing to lose.  Wrong!

A normal person would have nothing to lose.  But someone with a significantly impaired rememberer has a whole lot to lose ... as in coming close to ruining the bottom of her new oven.  For if you forget that you have a thick layer of ketchup on the bottom of your oven and you use that oven, you will burn to a blackened mass that layer of ketchup.  Ketchup which has tons and tons of sugar in it.  Sugar burns.  And when it burns ... it will remain behind a nuclear holocaust.  SIGH.

I went hunting and hunting and hunting and am working on the backing soda method.  It got some off, but not nearly enough.  So, I am on round three of trying to clean my oven with a baking soda past.  I don't know when I'll be able to use it again because I don't want to continue to bake that mass on.  Plus, the smell is horrible and the smoke sets off the fire alarm near the kitchen.  SIGH.

I thought to post photos, but I am a bit gutted by what I have done to my new oven, so I just couldn't hit the shutter button on my phone.  Stupid Myrtle.  Stupid, stupid Myrtle.

I am, of course, open to any method for getting blacked ketchup off of the bottom of an oven.
SIGH.

Adding my voice...

I joined Instagram.  The link is here.  I thought that it could be a way to interact with the larger world and help me to focus on ... something outside myself.  I am not so much wanting to pursue advocacy about chronic illness, but I thought I could share some of my journey with invisible illness.  And I could combine that with my love of photography.  Although ... I don't think much of my photos.  They certainly do not rise to the level of being photography.

And I already have a couple of followers!  I actually have more than two, but one of the others is a friend and the rest seem to be businesses and/or gurus in the chronic illness world.  I am not sure why they would follow unless to get an idea from me.  Hah!  Think it will be slim pickings in that regard.

I actually got the idea from one of those Facebook challenges that is currently making the rounds.  The idea is to post seven black and white photographs of your life.  No titles or explanations.  I didn't realize you are also not supposed to post photos of your children or your pets.  I posted one of Amos, but he is more than a pet.  And he is a large part of my life.

I think that my dear friend Becky did a much better job than I did on the challenge.  She was more artistic and deep with her choices.  I particularly loved the ones of her piano and the mantle clock.  Of course, I might know a bit more of what those two represent than most do.

Anyway, I posted my black and white photos on Instagram, with a bit of an explanation and hashtags that fit what I was trying to show.  I liked what I was able to share and felt like I do when, here, I can write what it is that I am trying to say.  Such is rare.  But, on Instagram, I can use a photo to take some of the burden of words.

Life with #gastroparesis means eating multiple small meals and doing anything and everything to keep your food as fresh as possible. My top rack of the dishwasher: custard bowls as my dishes and snapware glass storage containers! #chronicillness means changes in all parts of your life, not just your body. #dysautonomia means malfunctions all over your body, including your digestive track. #mylife #neurocardiogenicsyncope #invisibleillness #newnormal

A post shared by Myrtle Bernice Adams (@myrtlebadams) on Nov 16, 2017 at 8:17pm PST

In this post, I was emptying my dishwasher and was struck by how my top rack had changed, had turned into a portrait of sorts of how gastroparesis has changed more than just my body.  I have a gazillion custard dishes and a gazillion glass storage containers.

The first I have because I have to primarily eat small meals.  The second because I have to keep food as fresh as possible.  Because the fresher your food is the less bacteria is growing on it and the greater chance it will digest more smoothly.  Plastic is more porous than glass.  Glass storage containers keep food fresher and keep it longer.

I have to worry about things like is my food fresh, but I also have to worry whether or not I have enough glass storage containers!  This is partly because I run the dishwasher just once a week and partly because of the way that I cook.  For example, I will poach two chicken breasts to get four servings of poached chicken.  I will put each serving, whilst still warm, in a separate snapware glass  container.  I use the one-cup size.  That way, there is no air added to the chicken from opening and closing the same container.  And each container maintains a seal of sorts having been closed on the warm chicken.  So, my poached chicken lasts longer, still tastes good, and doesn't set off malfunctions in my innards.

Of course I do wish I were an artist.  I wish I could capture in a photo some of the depth of the challenge of being chronically ill.  I'm sure an artist could have done a better job at capturing what I saw whilst I was piling up the glass ware.  And yet I am not unpleased with my small effort.

I think it might be a good thing—for me at least—to add my voice to the Instagram world.

Getting me some ferns...

I have two hooks on my front porch for hanging plants.  There are more, actually, but two in the front that I use.  A few years ago, my mother bought lovely baskets for them.  So very lovely.  But large baskets are expensive, so I have tried to make my own ever since.  The first time I did was a dismal failure, but my second attempt went well ... at first.

I had Wandering Jew baskets that I made from a single broken piece from a plant my dear friend Becky bought during her visit.  They were terribly scraggly the first year, but were spectacular the second year, after wintering them in my living room.  The third year, they grew scraggly and I just couldn't stay on top of them.  So, I gave them up.

This year, I bought fuschia baskets at Walmart.  They were very small, but pretty.  The thing is that they never really filled out.  They stayed small all summer.  Pretty bloom after bloom, but small.

Here they are just a week ago, when we had the first really cold night.  When I found them still alive in the morning, I decided to winter them in the solarium to see if they might could finally take off.  So, first I decided to do a long, deep soaking before taking them upstairs.  I also gave them some fertilizer.  I am not sure they will like the cold sunshine that is my solarium in winter, the way the succulents revel in it.  But I thought, if they survive, I would try them out in my haven next summer.

For my front porch, next summer, I am finally going to get a couple of ferns.  I love ferns.  And I love, love, love the look of ferns hanging on a porch.  There are two houses on my block who had them hanging on their porches this summer.  I admired them every opportunity I could.

After dwelling on the matter some as things were kind of imploding, I thought that I was going to give in and just get me some ... that I was going to stop counting the cost on something that would give me such bliss in this wretched life.  Next spring, I am going to buy ferns!

And probably post a gazillion photos of them if I can keep them alive.
Silly Myrtle.

Medical update...

Today was my GP appointment, something that was delayed this month and which couldn't have come a moment sooner.  It was hard for me to wait.  And, of course, I went over on my appointment.  I really need help with being more timely.  SIGH.

The first bit I want to discuss is going over the problem with the wretched constant shocks in my palms and fingertips.  I learned that it is unusual to be bilateral (both sides), so that probably points primarily to neuropathy, something which I am 99.99% sure it is.  I was glad to learn that she did not think it related to either the migraine or the sumatriptan.  

The first two options were the ones I thought we might come to as a decision.  However, my GP offer two more to the pot:

Option #1: Waiting to see how the increase of gabapentin goes.  My GP said that we might expect to go to 600 mg thrice a day if the increase from 400 mg to 500 mg doesn't stop the constant neuropathy.  I had a great decrease in overall neuropathy after we increased from 300 mg to 400 mg.  So, a part of me is hoping a one- or two-step increase might do the trick.

Option #2: Add an SNRI to the mix to see if it would make a difference in my neuropathy treatment.   I have been reading up on Cymbalta because that is most often mentioned in the nerve pain support groups I participate in on Facebook.  I am of two minds about trying Cymbalta, because of its side effects and its addictive nature.  My GP said that I could try Cymbalta or I could try Effexor. She gave me the homework to research Effexor and ask about in my support groups since I am not familiar with it the way that I have learned about Cymbalta.  Either one should work and the choice to try either one is up to me at this point.

Option #3: Have an MRI of my head and cervical spice to be sure that there is not something else that needs pursuing.  I have been worried about this ever since I had the pacemaker implanted, but my GP took the time to look up how we would do an MRI with my pacemaker. I would go to the pacemaker clinic and have my pacemaker put in MRI-mode (sort of like putting it to sleep). Then I would go have both MRIs. Afterwards, I would go back to the pacemaker clinic and have the pacemaker put back into normal mode (wake it up). It sounds doable. Just a VERY long day. And this WIMP would still worry about being in the MRI machine. So, I was a bit thankful that it was too late to call Parkview Scheduling today. I will note that hospital MRIs are more expensive than stand alone clinics, but I do think that I should get them done at Parkview because of the pacemaker complication.

FOUR: See a neurologist. Since I have had less than positive care from neurologists in Fort Wayne, I am not so much interested in that one. I also know there is not a whole lot more to be done at this point. However, I spent some time reviewing the doctors on my plan. There is one I have seen before once, who is female. There is another who has Parkview privileges and who has good reviews, but is male. The one my GP recommends is out of network. I am considering trying him, even though it is much more money, solely because several of her patients really like him. All that is to say, I have done some homework and am open to dipping my toes in the neurology waters again.

That covered my body shocking itself, but there was ever so much more to address.  My cardiologist is still leaning away from my heart being being behind the shortness of breath and the breathlessness.  I really wanted him to do an evaluation of my heart function, since the BNP test results were high, but all he did was offer to do another echocardiogram if I wanted one done.  Yes, well, I felt condescended to with that and will not be asking for one.  I'll wait until he wants it.  I do wonder if I can have the blood work repeated.  In any case, I was very, very, very thankful that my GP would like to be cautious and rule out Sjögren's Syndrome affecting my lungs at this point. So, she ordered a high resolution CT scan of my chest. Part of me really, really wants an answer. But that would be just about the worst answer I could get at this point. So, I suppose I am crossing my fingers for a normal reading.

What I haven't really written about is that I have been 99.99% certain that I had plantar fasciitis in my right foot.  It got so bad that I stopped walking on the treadmill 15 days ago and started a comprehensive scope of treatment: twice daily ice, thrice daily stretches, twice daily exercises, compression sleeves, anti-inflammatory medication, and rest.  It turns out the plantar fasciitis is much better, but the way that I have been walking compensating for the severe pain means that I now also have tendonitis in my right ankle. SIGH. Tomorrow I start a 10-day course of prednisone to deal with the pain and continuing inflammation. My GP said that I will probably be in the least amount of pain since my body started attacking me. However, she already warned me that she will not be giving me a monthly pack of prednisone.  My fervent hope is that the BIG GUN of the prednisone pack and continued icing and rest will get me back to walking on the treadmill on the 26th.

Who knew that torturing myself on the treadmill would have helped my beleaguered mental state?? I find that I miss it and I deeply, deeply miss not being able to work on trying to mitigate the incredible weight gain from taking gabapentin. I walked for 9 months in the neighborhood and only continued to gain weight. Two months on the treadmill and I had started a downward trajectory on the scale.

No more. The increase in gabapentin and the lack of treadmill torturing has me gaining weight again. SNIFF. SNIFF.

We also did a fall assessment worksheet from my Medicare Advantage Plan.  I dislike jumping through hoops, but I have been working on finishing up the 2017 Healthy Rewards for my Medicare Advantage Plan. So, far, I have earned $40 in gift cards (I chose Amazon since that is where I get my theanine) by doing the eye exam, the flu shot, and (today) the fall risk assessment. On December 8th, instead of my normal monthly visit, we are going through the Annual Check Up visit even though I see her every month. That will earn me another $15 in rewards.

With the $40 so far in my Amazon account (I just redeemed three rewards), I am going to get something for my tub to help me be more stable in it. My GP recommended this mat because it is what she uses. I ordered it since it is user-tested by my GP. She also has those stick on ones, but my GP said that they do not provide the stability that the mat does. I also like that the mat can be taken out and cleaned when my tub is scoured.

My GP gave me a lesson on balance.  Balance is affected by 3 things: 1) eyes, 2) ears (inner ear), and 3) feet. If one of those is unavailable/compromised, the other two should compensate for the loss ... unless one of those is also compromised.

We talked about how I often fall in the shower when my eyes are closed (washing my face and rising my hair). She surmised that I am not getting a good enough feel of the ground beneath me because of the neuropathy I have. This theory is mostly likely correct because I feel most secure in the tub the first week after the Household Magicians clean it. It is like I am standing on Gibraltar. A few showers later I no longer feel secure. The mat should help with that.  I am hoping it does.

We also went over a few other smaller issues.  I had been saving up a lot since I missed my appointment the first week of November.  Next month, I hope to be just on time since we are doing the annual exam.  Although, if I have test results before then, I would like to hear about them.  Even with that, though, I do want to stick with one hour.

I will note that my blood pressure during my visit was 80/60.  The nurse kept thinking that it was an error.  I laughed and told her that is what can happen with NCS.  Funny how that doesn't even worry me anymore.  A part of me was actually glad I had a really low day, because doctor's office syndrome ususally makes me the opposite with all my worrying.  This way, I have something more like the readings I have at home.  Still, I wonder what drove it so low today.

Finally, I will say that I made my doctor's life better in one way.  I had told her about the Awesome Note app, which I adore, because of the stress of having to try and restore all my notes.  She went looking for a similar app and found a free one that she likes.  So, now she had more organization in her life and an even better use of her smart phone.  I really like that she share that little blessing with me because she's been a huge blessing to me.  I like knowing I've been a small one to her.

Puttering about the yard...

Last night and today I worked on prepping the yard a bit for winter.  Our weather has been so very wacky that my weigela didn't stop blooming until yesterday when it froze.  It was rather massive, so Firewood Man suggested that I prune it back to about a two-foot ball.  I have pruned it every save for last year.  I liked the growth that I saw this year, but it out grew the corner bed where it is by the end of the summer.

I also cleaned out the rest of the original raised bed and my raised bed 2.0.  The second round of carrots were still in the original raised bed.  Even though they are supposed to be ready to harvest at 75 days, I left them in the bed until the tops froze on day 97.  Clearly, I am not skilled at growing carrots.  SIGH.

I also pruned back the rose bushes.  One of the new ones died and I pulled it out, but I never got around to replacing it.  I very much wanted to do so, but I kept thinking about that terrible injury to my back the last time I tried to dig a hole.  SIGH.

What's left is to prune back the burning bushes.  I do that every fall, but the leaves haven't dropped yet.  It is far, far easier to shape them when they are bare.  So, I am hoping they drop soon since we've started to have a spate of weather too cold for puttering about the yard.

My final chore was to put away the two fountains.  For the one in the haven, I had a rather difficult time emptying it.  I think I could have built it in a better manner so that breaking it down is much easier.  I have the winter to think about that.  For now, I struggled to pick up the upper pot since it was full of water and the pump was connected to it.  And emptying the larger bottom pot was quite difficult, since it was incredibly heavy and I was trying to direct the water away from my shoes!  I should have changed to my gardening shoes first.  But I got the fountain emptied and moved into the garage.  The pump is drying out and then I will move it to the basement.  I learned the hard way it is best to not freeze your pumps.

I wore my gloves for all the pruning and bed work, but I foolishly took them off before taking apart the fountain on the front porch.  The mini-mountain is made out of a faux pumice or something like that and it cuts your fingers and hands and arms and pretty much any body part that you get near it.  I basically shredded my right pointer finger.  And I realized why it is you don't buy generic medicine.  Neosporin has pain relief in it!  The generic version I grabbed does not.  Be a better shopper, Myrtle!

Last night, I did not sleep much because I kept having sleep paralysis with my night terrors.  It has been a while since I was trapped in my body because of my dreams.  It is a horrify experience that is difficult to explain.  And it got me thinking about nerve pain ... because I didn't want to think about my night terrors.

Like the bouts of sleep paralysis, Trigeminal Neuralgia is such a lonely, lonely condition.  Its pain is truly ineffable.  Even when it is wreaking havoc in your life and driving you to despair, describing it seems impossible.  How could this pain in the side of your face fell you so? It attacks you so suddenly, gripping your whole body even though it is in your face.  For me, each time, I fall to the ground in the grips of its agony.  There is no room for thought or feeling or any kind of sensibility.  There is only the pain.  And when it is over,  I am numb with shock.  When the shock passes, it is hard to do much because of what I just went through.  And I try not to think of what I just went through, because if I did I would ... I would want to die before going through it again.

I cannot fathom how it is for those who suffer constant neuralgia instead of its flares.  

More days lost...

More days lost.  SIGH.

Mostly, I've been taking care of things.  I called GE and got an appointment for my new stove.  It took me months and months and months to figure out why it is not broiling evenly.  The broiler isn't lit evenly!  A no brainer, I know.  But it took me forever to realize that.  I've got less than two months of warranty left, so I wanted to have someone come out.  Of course, it took me a few weeks to work up the energy to make that call.

Then, sadly, the only appointment was for the morning hours. So, getting up for that was taxing and recovering from both the stranger in my house and the early morning was the same.  Just typing that wearies me.  The upside is that the broiler is going to be replaced to ensure that it is not the part as opposed to how the model works.  If it is the model, I shall be a bit disappointed.  I really do adore cooking with gas.  I suppose I could learn to rotate the pan whilst broiling.  Maybe.  Another thing to remember.  SIGH.

Then, I had to work up the energy to call Whirlpool again.  The parts were replaced at the end of September on repair trip #3 (each repair actually takes 2-3 visits to the house) and there has been no real change in the refrigerator.  It still freezes my food and is sometimes much warmer.  Personally, I think it is that it is the damper, even though it has been replaced twice.  I think that it is a faulty part that Whirlpool hasn't resolved.  But, then again, what do I know about refrigerators?

Finally, I am being referred to the unit replacement program.  I have yet to hear back, but some time in the next 3 business days (since 2 have passed) I should receive a call from the program.  I am a bit skeptical, after all this time, that things can work out.  However, it would be a great relief to have a reliable refrigerator again.  One less worry to have on my plate.

I have also been working on my prescriptions.  As I mentioned the other day, I have been working on looking up other options for nerve pain management that might be viable ones for me.  A lot of folk in my Facebook support groups are deeply worried about having their opioids taken away from them. Already they are facing terrible obstacles toward getting (and taking) their current medications (mostly in the Pudendal Neuralgia and Trigeminal Neuralgia groups).  That pain is so bloody severe that often opioids are the only thing that works.  For many of them, the opioids do not even take away the pain.  They just lessen it.  Genuine chronic pain patients are caught in the movement to combat addiction and it is terrifying for them.

Something that comes up again and again is the idea of having counseling to learn to live with the pain.  Mostly cognitive behavioral therapy is what I see.  Whilst that sounds good, it is more complicated that something that seems reasonable.  For some, it is the easy way out for doctors who are not understanding or believing of their pain.  In the Pudendal Neuralgia world, this is especially true.  Even though everyone has a pudendal nerve, some doctor's doubt is can cause the debilitating pain that it does.  Funny that since other neuralgias are recognized.  SIGH.

Plus, it is utterly devastating to hear that nothing more can be done for you.  Going into counseling has to be the patient's choice.  But more and more pain management clinics are making it a requirement to continue receiving the same treatment that a patient has had for a while.  Essentially, they feel their pain medication is being held hostage.

Sometimes, I get that.  I mean, from the time I started taking Xanax to the end, how it was given changed.  At the end, I had to get a prescription every month or so.  And it was extremely stressful because the drug is not something you can stop cold turkey.  I was on a relatively low dose and yet I was treated as if I was some kind of junkie.  What I could get, the length of time between having to what felt like begging for refills, dwindled.  I had wanted to get off the drug for a while, but every time I asked for help, my request was brushed aside, even when I talked about how stressful it was to always be in limbo over whether or not I would be able to get more Xanax.  SIGH.

So, a bit of that ... continuing coverage concern ... still lingers with me.  I am now taking three medications that cannot be stopped abruptly.  Managing those prescriptions is stressful to me, even though I am in the best of situations right now, with good doctors who are good listeners and are supportive of my care.

For the baclofen, we increased that last month, although I put off starting the gradual increase for two weeks just thinking about the side effects I would experience again.  Then, it was trying to get the prescription changed to the 10 mg pills, which are both easier for me to swallow and are cheaper.  Today, I receive my bottles of the next shipment and they are the 10 mg ones.  Yay.

For the gabapentin, I had to end up asking via the messaging system, for an increase because I just CANNOT STAND this constant shocking in my hands.  There was a bit of a miscommunication, so the original order was not sent in, but I got that one re-sent.  I am now one week into the gradual increase of that drug.  Being extra cautious with that one means a much slower increase.

Then, I had a bit of a panic about the gabapentin 400 mg pills because I am nearly out of them and will need another bottle before I fill my meds a week from Sunday.  I had forgotten to order them when I noticed the dwindling supply when I was filling my meds last Sunday.  That forgetting, when I discover it, grieves and distresses me.  I had to go through all my meds and figure out which ones I needed from the mail order pharmacy to get that order done.

Then, I needed to have my hormones refilled, only this is a new prescription and it was not entered in correctly last time, so I was trying to figure out if it was corrected before I tried to refill it again.  That was a bit of a management process.  But I am glad to say that those are ready to pick up once I can drag myself out of the house.

Finally, I was working on my sister's birthday box.  I have been a wretched sister when it comes to celebrating her birthday my entire adult life.  My family doesn't really do birthday celebrations, not like I see in other families.  I find it hurtful, but I never stopped to think about how my sister found it.  That's why, when I realized she had no celebrating of her 50th, I decided to share mine.  Thinking about that still, I wanted to send her something good for her birthday.

She was appreciative of my newfound lemon pound cake skill and I got the rather brilliant idea of sending her one for her birthday.  And, because the box needed filling out, I also made her some of those bloody fantastic brown sugar oatmeal cookies and some of the maple chili roasted sunflower seeds.  Finally, I took care to wrap the present I bought her to make it extra special pretty.  Now, to be honest, I shall admit that I reuse wrapping supplies like nobody's business.  I haven't bought anything more than a gift bag in well over a decade.  Still, I think that I did a good job.  And then I got the box packaged up and off to the post office today.

All of that ... well ... I am exhausted.  And so I sit, trying to ignore the constant shocks taking place in my hands, and think about blogging without actually doing so.  Who would have thought that I would come to a place in my life when I am too exhausted to write.  SIGH.

Oh, this wretched life of mine!

Prescription bargain hunting...

I am blessed with a GP who is willing to help me work on the best prices. She will look up things on my formulary and try to find options on Tier 1 and Tier 2. She will also make changes based on free programs (such as changing me from Advair to Dulera) and based on pill pricing (the 10 mg of baclofen is much cheaper than the 20 mg pill, so we changed my dose to two 10 mg pills at a time instead of using the 20 mg pills so I have less of an impact on my Medicare prescription spending total).

I currently use four different local pharmacies and a mail order pharmacy. At the local pharmacies, I switch between using my Medicare Advantage Plan and GoodRX coupons depending on the price. I also get three prescriptions for free using the manufacturer's patience assistance program (Celebrex, Combivent, and Dulera). All of those free ones are Tier 3 drugs and would take me to the donut hole around April if I didn't get them free, making my medication costs soar out of reach for me, being on a fixed disability income. With the assistant programs and my bargain hunting, it is November and I am still not yet in the Donut Hole.

So, right now I am considering asking my doctor about Cymbalta (duloxetine) to see if it helps with my nerve pain. I spent much of today looking it up on my formulary, calling for the price it will be charged to my insurance, seeing what it will be using a GoodRX coupon, and seeing if the manufacturer (Lilly) has a patience assistance program (it does, but I do not qualify based on my medication spending). In this case, my insurance co-pay would be $45 and the cost to insurance (charged against my medication total before reaching the donut hole) would be around $100. However, if I use GoodRX, the price will be $19.50 AND, being cash, it will not be charged against my medication total (a total win in my book). I will be taking the GoodRX coupon for Meijer Pharmacy to my next GP appointment to ask if it is time that we add Cymbalta to my drug regimen.

For the newbies to the Prescription Bargain Hunting game, to sum, the things I do are:

1) Ask the doctor for other options in that drug class in case I find a cheaper one when I do my drug pricing research.

2) Look to see if there is a manufacturer patient assistance program or coupon for my drug and for the other option drugs. The programs usually based on some combination of insurance (or lack thereof), income, and total prescription spending.

3) Check my formulary for my drug's tier and then look up the similar options to to see if there is a cheaper tier. I asked my insurance company for a stand alone copy of the formulary and bring it to all my medical appointments.

4) Check GoodRX to first see if there is a price different between the pill sizes to see if there is savings to be had by taking more pills at a lower dose (like two 10 mg pills to get a 20 mg dose). Then I look to see if the coupon prices are lower than my co-pay. Finally, if I am going to be using the GoodRX coupon, I check to see which pharmacy is lowest at the dose I will be taking.

5) For my maintenance drugs, where possible I try to get 90-day supply from the mail order pharmacy. This is because Tier 1 and Tier 2 drugs are free in 90-day supplies on my Medicare insurance. Many insurance companies have a mail order pharmacy that is cheaper in 90-day supplies. However, my mail order pharmacy is always more expensive where I have co-insurance (a fluctuating amount usually based on a percentage) instead of a co-pay (a fixed amount). So, I only use it for Tier 1 and Tier 2 drugs where they are free. Thus, it is important to do some research on the cheapest way to use your specific mail order program.

5) Every time I get a refill and that refill will be using insurance, I double check GoodRX to see if the cash prices are better because drug prices can really fluctuate. If I am already using GoodRX, I do another search in case switching pharmacies will save money. For example, last month the hormones I take dropped from $15.27 to $9.80.

6) To every doctor appointment, I bring a chart of all my medications that shows where I buy them so that when I need refills sent, I know what location/method is the cheapest. I also bring a copy of my formulary in case we need to look up new medications.

7) For every new prescription where I will be using GoodRX, I get a paper prescription so that I can bring the coupon with me. If the doctor's office hems and haws about paper because their policy is to use electronic prescriptions, I very calmly and bluntly say that the only way I can afford that particular medication is using GoodRX and when starting up a new prescription with a pharmacy paper is best ... the smoothest process. I've never had a doctor refuse to give me paper once I start talking about trying to afford my medical expenses. Once GoodRX is in a pharmacy system, the coding will stay on the refills. But if you have a new prescription because you are out of refills, it is best to get a new paper prescription instead of having that new prescription called in so as to avoid the problem of having the new prescription run through on insurance instead of GoodRX, even though it was run through on GoodRX previously. Insurance seems to be the default entry of most pharmacy computer systems.

This is exhausting, but it is necessary if you are on a fixed budget.  And, to me, it is really necessary for anyone looking to save on their prescriptions.  Unless your co-pays are really low on the upper tiers of your plan, checking out GoodRX is prudent.  I have saved ever so much money using it even with prescription coverage.  And, with the two prescriptions I have that are not on my formulary, GoodRX saves me a substantial amount each and every time I pick them up, especially the benzonatate.

I am grateful that I found an more economical way of paying for cymbalta should my GP choose to go that route with nerve pain control.  GoodRX is $24.50 cheaper, per month, than my Medicare Advantage Plan insurance.  Of course, I would be even more grateful if the nerves shocking me would stop!  SIGH.

I've said it before and I'll say it again:  dealing with chronic illness is the work of a graduate degree.  Really, it is several graduate degrees, such as Prescription Management, Insurance Claims Management, and Illness Specialities.  When you battle chronic exhaustion, working up the energy to throw yourself into the prescription or claim or treatment fray is daunting.

Never assume...

My security system company is having growing pains that are really, really, really frustrating.  Trying to get to tech support these days often requires an hour or more on hold.  This from a company whose business model is based upon customer installed systems.

I called for one problem and learned that my system is still under warranty.  That means that I can still get an inset sensor for the basement entry free of charge.  When I had the other two door sensors switched out immediately after getting the system, I somehow overlooked the basement door, the first door for which I had to jury-rig a means of attaching the sensor.  I have never felt comfortable with my solution for the sensor and was grateful to hear that I could have an inset one ... the kind that you drill into the top of your door and the bottom of the top of your door frame so that the sensors are inaccessible to the common thief.

Tonight, Firewood Man came over with his 3/4 inch drill bit and took care of the installation!  My doors were made onsite back in 1920, so the wood is HARD.  There is no way that I could have drilled a hole.  Plus, the new sensors are twice as long (deep) as the ones I received nearly two years ago.

All three of my doors have glass in them, so I have a double-keyed deadbolt on them ... where you have to have a key on both sides.  The front door is an oversized French door, and I think, even with all that glass, would be hard to destroy because of that hard wood.  The back and basement doors are ones with large single pane.  So, I didn't want a sensor that was easily viewed from the outside.  Thus, I already feel much safer with the sensor installed.

I keep thinking about seeing to the cost of a motion sensor in the basement, because I would like the advanced notice if someone managed to break the glass and crawl through it, go down the stairs, into the other room, and back up the basement stairs to the kitchen.  However, once there, the intruder would set off the motion detector.  That's probably why I haven't taken that step.

The other thing Firewood Man did was to get the window above the treadmill and recumbent bike open for me.  There was this crazy long, ancient bolt being used as a window security pin.  I got the left side out, but not the right.  He finally got it out, but the window wouldn't open.  When it finally did, we realized we had never cut through the paint from this summer's paint job.  That window now needs to be painted again.  SIGH.  However, now I won't be so stinkin' hot whenever the heat kicks on whilst I am torturing myself on either piece of exercise equipment.

I was trying to figure out how to hold the window up because it was resting on Firewood Man's head whilst he worked on cleaning up the paint and stuff that was making it hard to close the window back up.  When I said that maybe I should get a hook and eye doohickey, Firewood Man suddenly said I wouldn't need one.  He'd already noticed the hook attacked to the window and found the eye in the joist above us.  I think I would still like something I could just wedge in the bottom to keep the window open just a bit since being wide open won't be necessary in the dead of winter.

I was too chicken to ask about the window opposite this one, even though I know the value of a good cross draft.  When I checked myself later—looking not working—I spotted another hook and eye.  I will try to remember to go and cut the other four basement windows from the outside before I try opening any more from the inside.  With two entrances to the basement, one being an outside entrance, I never worried much about opening the windows.  But I now need some cold winter air by the treadmill at least.  Mission accomplished.  I can worry about the rest later.

Before he left, Firewood Man shot the breeze with me a bit.  He knows how lonely I am and gives me some time whenever he can.  It is sad, to me, that he feels less safe in my neighborhood since he first started coming over to my house.  The whole city is less safe, but so is my neighborhood.  It is weird to look around at my beautiful old house and think about the decline of the neighborhood happening all around it.  Not a heavy decline, but a marked one nonetheless.

That is why he was so willing to come over as soon as possible to switch out the sensor.  He fully supports both making the house safer and helping me to feel more safe.  I like that about him.  And that he mows.  And his firewood.  And his countrified patience and mercy he always shows to me.

To me even when I block the door because I was peeved he didn't have the sawzall with him, my solution for the window bolt problem.  He didn't have it with him because he wanted to eyeball the problem.  I was so certain it was needed I was miffed and sulked quite a bit as we went downstairs to the basement.  I was equally certain the entire time he was working on the door sensor and left him to his own devices for the first time ever when working in my hope (I'm a side-seat driver even in home repair).  I was so certain right up until the moment he pulled the bolt out.

But you know what they say about assuming something.

He was right to wait and see.  I was wrong about what tool we needed.  Instead of a sawzall, we needed a painter's knife, a cutting blade, and locking pliers.  I was wrong and he was right.  SIGH.

But let's not focus on that.  Let's focus on new sensors and open windows rather that how we got here.  And the blatant reminder lesson I got about making assumptions.  And how mercifully that lesson was given despite my sulky ways when I was certain I was right.  I don't deserve the blessing that is Firewood Man to me!

Oh, and if you need help programing an IQ security system panel?  I'm your gal.  No question is too small or two embarrassing.  My especial skill is to add and delete sensors.  But I can also run tests and customize the system for you.

Ah ... the things you learn as a homeowner!

Being tortured...

Shock.
Shock.
Shock.

It is difficult for me to concentrate on anything.  And it is difficult for me to be fully sensible ... or at least as sensible as I am capable of being.  A large portion of my brain is caught up in being shocked. In managing the pain and surprise and jerking of being shocked constantly.

Shock.
Shock.
Shock.

Last night, I started an upgrade to the gabapentin.  I'm going from 1,500 mg to 1,800 mg, 100 mg a dose at a time.  It should take about 2-3 weeks.  I am hoping ... fervently ... it will make a difference.  But when I think about the last constant neuropathy I had, the bee-sting pain and itching with the pacemaker incision, I am discouraged because it was 18 months of increasing and increasing and increasing gabapentin—and gaining weight—before first the pain and then the itching ceased.  I cannot fathom living with being shocked by my own body for a year or more.

Shock.
Shock.
Shock.

More than anything else that has happened to me, I feel like I am being tortured by my own body.  SIGH.

Flashback revelation

Therapy today was good in that the therapist enlightened me a bit about why I have been so upset over something that I know is not what happened.  She told me that the way I described it to her ... far more detail than what I wrote here night ... was someone describing a flashback.  That surprised me.  I mean, I thought I knew what flashbacks are, considering I have them a lot.

To me, the strange thing was that I had a flashback on Monday that was par for the course.  I was in a parking garage basement and I heard a noise that startled me.  BOOM!  I was right back in the parking garage where I was raped.  I could smell the urine on the ground and feel my head slam against the concrete.  There was pressure all along my body as I was forced against the wall.  I screamed and screamed and then fled into the floorboards of the back seat of my Highlander.  I wouldn't have thought I could squeeze myself down there, but I was trying to hide.

It felt like ages for my body to calm down and even longer for my mind to leave the past.  I am proud of myself for going inside to get my blood drawn.  It was one of the few times I wasn't transparent on Facebook, for I was ashamed at how afraid I was.  I just posted about my blood work being done and moved on from there.  No mention of the bruises I have from jamming myself into my vehicle.

Of course, I will not be going back to that lab unless I am already at my GP's office up on the 2nd floor.  If so, then I could take the interior elevator down and back up.  Otherwise, I am going back to the lab on Liberty Mills.  It's a stand alone, single story building that has no ... triggers.

When the cardiologist touched me the third time, I went cold all over and became full of fear.  I slipped into that shut up/be still/wait until it is over mode.  I felt my whole body screaming at me to leave.  And, as I have said, I had this thought of being groomed.  A thought I haven't been able to escape even though I know it was not what happened.

When I started, I told her that I HAVE to figure out how to change that thought by the end of January because I can NOT walk back in his office thinking that way.  I have been rather distraught over that.  And a bit despairing because changing thoughts has not been a skill of mine, despite working hard to acquire it.

However, with her ... revelation ... this is not so much a thought I have to change as to re-categorize.  I already know that when I have a flashback, I can be a tad insensible.  And it is insensible to think that my cardiologist was grooming me.  He's proven over and over and over again that he is committed to make me feel safe and worthy of care, even when doing so disrupts his rather busy schedule.

It wasn't so much talking about it being a flashback in the session as it was that revelation and all that it could mean soaking in on the way home and since camping out on the sofa.  I don't need to change the thought so much as to understand why it happened.  It is not exactly a wrong thought.  It is just a thought from the past, not the present.

I can work with that.
There is hope with that.

I already know I cannot believe my body during flashbacks.  So, I think that if I focus on what happened being a different kind of flashback, especially since part of me stayed there and still functioned, I should be able to eventually leave last Thursday's appointment in the past and not keep it in my present.

I am not sure if that makes sense, but it does in my mind, which is most important.  A flashback is not reality, which I already know.  The upsettedness of flashbacks eventually end.  Now that I understand that was what was happening to me and what skewed my mind ever so much, the end will come.

In a way, maybe the constant shocking in my palms and fingertips will be of service just now, as I am greatly distracted with them.  Very, very much so.

From childhood's hour...

I know that this is not what Edgar Allen Poe had in mind when he penned these lines ...

... but think about a child who has been sexually abused repeatedly and read them again.


When I saw this image, that was my first thought.  That this was a meme for adult survivors of childhood sexual abuse, but it was not.  It was just a poetry meme.  Only, for me, that is exactly what the image was ... is.

Were I a poet, I could have penned these words and they would have been about my past.  About how I was as a child.  About who I am now because of that.  I wish that I could pen the words in my head as a poet.  For me, I can only fumble about whilst I try to find the words to make them make sense for anyone other than me.

My cardiologist knows about my past, not in detail but as a concept.  Because of that, since the beginning, he has not had his nurse deal with me first collecting my symptoms, but has taken them himself, so that I would learn to deal with him.

When I had my pacemaker surgery, he was very, very, very accommodating for me.  For one, I wore a bandeau bra into the surgery and he worked around it.  For another, he had an all female support team.  And he made sure the hospital had all female staff for my care.  There was one snafu with the tech sent for the in-hospital pacemaker interrogation, but, upon reflection, I am not sure it is realistic to have expected perfection with the hospitalization.  And I could have refused his service.  Well, if I were a different person, I could have.  The possibility was there.  I am not sure my cardiologist could have prepared perfectly because I am not sure he's ever had a patient like me.  In any case, I don't blame him ... which is big for me.

But something happened last Thursday during my appointment that has me deeply, deeply spooked.  It was something that was innocent and actually, upon reflection, probably good for me, but still I am distressed.

During my appointment, my cardiologist touched me three times.  He very purposely does not touch me and when he's near me, to listen to my heart, he asks my permission to approach and to lift my hair and just about anything he does.  When he's not listening to my heart, he sits pretty far away from me.  So, for him to touch me the way that he did was pretty unusual.

In my head, I know that he has spent years being patient with me and working up to me trusting him. But, also in my head, my first thought after the third touch was "He's grooming me!"  I panicked, but was able to shove that panic deep inside.  I know it is a lie.  But I also know it as a truth that has been proven over and over and over again in my life.  SIGH.

The conflict within has been ever so difficult to bear on top of the gastroparesis flare, the pain of which drove all thoughts of my medications out of my head, which added gabapentin withdrawal on top of all the other bodily misery.  To be so ill and so conflicted makes being so alone even worse.

In sum, the past week has been ... brutal.

I should add another thing my cardiologist did last Thursday was that he immediately and directly responded to something I dared to mention.  You see, there was this change in my appointments a couple of years ago where I no longer left with the next one, but was to receive a phone call.  Each time, I have not received a phone call.  I don't call myself because I feel such a bother and reckon the missing call is proof of my being a bother and do not feel worthy enough of his care.

Had I called for that appointment when I wasn't called, I would have seen him a month prior, right when I was in the grip of whatever was raising my overall heart rate and he might have caught the reason.  But I didn't.  I couldn't fight through the 1,001 ways I am utterly convinced that I am not worthy of care (or anything else good), including that I never get a call for an appointment.  Last time this happened, I didn't go in for almost a year.  I only called because I have been so worried about being short of breath with exertion.  The breathlessness didn't even start until after I had my apointment.  SIGH.

Anyway, I dared tell him about that issue of mine because it kept me from coming in and he once said that he didn't trust that I would call him when I needed help.  I reminded him of that remark and then explained why I let things go and how much it bothered me that I couldn't bring myself to call for an appointment.  His immediate response was that he would give me an appointment before even leaving the exam room and he would make sure that happens each time I come.

He's proven over and over and over again that I can trust him.  So, why am I certain his touches were grooming when I know that they were not?

I hate my childhood's hour.
I hate my mind.
I hate my ever present self-loathing and abject fear of the next time it will happen.