The heart guy...

Today's cardiology appointment was my BEST EVER, mostly because I got the BEST NEWS that I could hear at this time from him:

My pacemaker is MRI capable!  The issue is not the pacemaker.  It is with the FDA, who stepped in to monitor devices in MRIs.  The associations for cardiologists and for radiology say the device is safe.  The central data clearinghouse medsafe says that the device is safe.  Folk with the device are getting MRIs in Europe.  Yet the FDA needs more information.  SIGH.

Still, there is a workaround.  It is a long and involved process that my cardiologist has to do that involves seeing a waiver and arranging for a programmer to be on hand and personally taking responsibility for any damage to the pacemaker.  If I decide that the MRI is necessary, he will go through the process for me.

I am absolutely, utterly relieved about that.

At my GP's visit, I learned that 60 mg was not the therapeutic dosage goal for the new nerve pain medication.  She would like to get me to 120 mg before making a decision about whether or not it will help me.  I'd need at least two months at that level.  So, on the morrow, I will be moving up to 90 mg for the next three to four weeks.  So, the plan is that, after two months at 120 mg, if I do not have adequate relief for the constant shocking in my hands—Day 91 of that particular misery now—then my cardiologist will start the process so that I can have an MRI.

Originally, she was going to do an MRI of my head and cervical spine, but I am going to ask her to go ahead and do an MRI of my entire spine and possibly my lungs, since we wouldn't want my cardiologist to have to go through his song and dance more than once.  I do fear that, after all of that, the MRI would not show any further changes in my brain, but I know that it would be needful, at that point, to rule other things out before concentrating on simply trying to calm down my blasted nerves.

That news alone would have made the visit worthwhile, but I was able to talk through several other matters.  One of the best moments—aside from my blessed pacemaker news—is that I was able to think of a way to describe the palpitations I have been having: it feels like my pacemaker is in test mode.  He knew exactly what I meant and told me that I was feeling PVCs.  That is something that he can track on my pacemaker to see if I am having more (which it feels like to me) or if I am merely noticing them more.

We talked about the daily torture I am doing, and he gave me something to try since I've abandoned the recumbent bike again.  Once the plantar fasciitis and then the tendonitis were resolved, I kept up the bike by rotating between a day of walking, a day of biking, and a day of half-and-half.  Only the biking hurts my thighs so much I finally decided a couple of weeks ago that I was going to just walk.

I also started back with using my free weights with my arms and shoulders.  In addition, I have been working on my calf muscles and trying to work on my thighs.  I tried to do lunges, but kept falling over.  I need a walker for that.  I've been doing squats, but I have worried they wouldn't count since I cannot go down very low because of my crappy knees.  I have thought about buying sleeves for them, but I am not sure the investment would been a good one for me.  And I just started back on some backwards leg lifts the physical therapist suggested I do.  [It is embarrassing to admit, but she believes that working on my backside muscles would be very, very good for me.]

Always, my cardiologist asked me to considering doing stair steps.  I was a bit ... well, I repeated for the dozenth time that stairs are hard for me.  But he was saying to use the steps of my stairs the way folk do in a gym.  Up and down on two steps, holding onto the handrail.  I thought that was a good idea to try.

At this point in the visit, my cardiologist told me that he thought I was doing a very good job taking care of myself and was clearly doing the best that I could.  Maybe not the best, but I would go with the good job.  After all, I am not a big veggie eater.

My cardiologist also said the most lovely thing today: "I don't want to do tests on you that will only come back normal, because I don't want you to think that your symptoms are not real or are unimportant."

He totally gets life with Dysautonomia!

It was following talk about the MRI (and my comment that it would probably be normal) and also about the echocardiogram he offered after my last appointment in a message to me.  It was an offer that I took a bit ... hard ... and waited to respond to until I saw him again.  The nurse wrote the email back to me, so it could have been her words or it could have been that I was upset after my last appointment.  In any case, I read it as ... if you really insist on being tested for something we can do this.

That's not what he meant.
Which I knew.
I just couldn't hear what he meant then.

My cardiologist, when I said what my plan was about the MRI, responded that it was a good plan.  That warmed the cockles of my heart.  After all, you know I sure do LOVE ME a plan.

When we were talking about the echocardiogram, he brought up the MRI plan again as being a good one and then said he felt we were on a good plan for watching out to be sure that the symptoms of Dysautonomia do not mask any symptoms of heart disease, given my concern about my family history.  I see him every three months; I talk about the symptoms I am having that worry me—such as the chest pain I get when my heart rate tops 130 or the palpitations I described this time—he listens closely and repeats back to me what I am saying to be sure he understands; and then he considers the possibly causes of what I am experiencing.  Thus far, he is confident everything is Dysautonomia-related, other than I now have a lazy heart.

However, my cardiologist said that I am the one living in my body and so if I tell him that I am just not sure about something, he is happy to follow up my concern with testing.  Then he made that most lovely and caring and compassionate of statements:

"I don't want to do tests on you that will only come back normal, because I don't want you to think that your symptoms are not real or are unimportant."

I got a bazillion "likes" when I posted it in the Neurocardiogenic Syncope (NCS) support group on Facebook.  Lots of congratulations on having such a fantastic doctor and lots of jealousy wanting the same.  I find it interesting that in the general Dysautonomia group, which is mostly Postural Orthostatic Tachycardia Syndrome (POTS) folk, there was not as much love.  I have had a lot of negative interactions with POTS folk and have noted they are more of a test-happy group.

I've read oodles of posts about having a second, third, fourth, and even fifth Tilt Table Test.  That is a very dangerous and quite awful test.  I would never go through it a second time.  But I see folk traveling from one doctor to the next, one specialty clinic to the next either wanting a cause or a cure or both.

Dysautonomia is incurable and its cause is primarily merely a good guess.  Some women get POTS after pregnancy, but why that happens is unknown since pregnancy itself is not a cause given there are a bazillion pregnancies each year and not a bazillion new POTS patients.

I do understand the desire to be better, but those of us are not going to get better.  We can have better management of our symptoms, but even then that can be tenuous at best.  I was making headway on the dryness in my throat and my sinuses, but what worked for me before is no longer effective.  And the Restasis is barely holding ground in the battle of dryness in my eyes.

Pursuing a cure will only lead to a troubled bank account and a troubled spirit.

NCSers tend to be more pragmatic about posts, asking about doctors and meds and symptoms.  And they are less strident about folk all being on the same page when issues are raised.  So, I was not surprised at all that there was an outpouring of emotion in the NCS group about my cardiologist's view about testing and just a sniff of that in the POTS group.  I am just thankful I had a place to share that loveliest of comments with folk who would understand its beauty and comfort.

But back to the visit, I will also note that I was able, whilst discussing the echocardiogram offer, to tell my cardiologist that I was triggered during my last appointment.  I told him that I didn't understand what was happening until my therapist pointed out that I had had a flashback.  It was a different sort of flashback than I had had before and didn't recognize it as such.  After she pointed that out to me and that news sank in for a few hours, I was able to see that my thoughts during my upsettedness were not based on what had happened now, but what had happened then.  I didn't tell him what triggered me or what I was thinking, but I was glad to be able to talk about that briefly.

I forgot to tell him that I should get brownie points for not sending him an upset response to the echocardiogram offer or after I was told the less than accurate news about my pacemaker not being MRI-compatable.  It is.  The FDA just hasn't recognized that fact yet.  Oh, the heartache that could have been avoided had the nurse from the pacemaker clinic just have explained that to me!

Well, I'm sure that I am forgetting something about my appointment, but you get the gist of it:  GOOD NEWS and good communicating.  This was my best cardiology appointment thus far, and it leaves me rather hopeful about future appointments.

Just how giddy was I about the pacemaker news?  I scheduled Attempt #2 at having an MRI.  I am going on Tuesday, just before my therapy appointment.  It is my hope that I go through with it so that I have a safe place to go afterwards.  SIGH.

Should I mention that I got COSTCO pizza on the way home??????????

a long day...

Today was to be another snowmageddon, but it never materialized.  Going with how I am struggling and my GP's permission to delay the mammogram, I called and canceled it.  Staying home from that was an enormous relief.

My GP appointment yesterday was rather productive, if discouraging for me.  The main thing I avoided discussing in depth was the whole problem of the chest CT showing a finding of interstitial lung disease.  In short, my GP wanted to talk with me first before consulting with the rheumatologist about treatment.  She also wrote a referral to a pulmonologist.  The soonest available appointment is in April.

The best part of the appointment, even though it made me feel like a blooming idiot was when we were discussing the dry coughing fits I am having, primarily in the morning when I am trying to sleep.  I know it is not my asthma and I am fairly certain it is not sinus drainage because my sinuses are severely dry from Sjögren's Syndrome.  I felt like a failure for not being able to manage the problem and I have been quite despairing about it.  I sort of lose it when I could be sleeping (i.e., the nausea has abated) but cannot because of the coughing.  Well, my GP pointed out that I have severe dryness in my throat and by the morning, it is most dry since I do not hydrate in my sleep.  Lightbulb.  Ohhhhhhhhh! Yes!

It is like my eyes. Because I no longer had to use hot compresses just to get through the day, I thought the dryness in my eyes was better. It is and it isn't. Learning that it isn't at my eye appointment last week was a bit devastating.  I am not feeling all that positive about having my tear ducts cauterized closed. 

Because I have been so much better at swallowing my pills, I thought the dryness in my throat was better. It is and it isn't. And, by golly, in the early morning to noonish when I'm trying to get some better sleep in, the dryness has me coughing up a storm. I was quite despairing about it when the tesselon pearls, chloroseptic, and cepacol all started to fall short and the coughing grew worse. But now that I know that my problem is dryness I can try to work the problem with that in mind.

Last night, I drank more before bed and drank a little bit every time I got out of bed to fetch fresh ice packs.  Before the integrative medicine specialist started me on n-actyl glucosamine and hyaluronic acid for the dryness, my GP has me trying carafate, dissolved into a slurry, to see if I can coat my throat.  It is the weirdest and most frustrating thing to have the driest of throats and have water quench the agony not at all.  The problem is needing your body hydrate the tissue from the inside out and having your body give up that process.

Buy, my goodness, why didn't I figure this out?????

Yesterday, I was grumpy and tired, having already done too much before seeing my most amazing doctor.  I had been to the orthodontist to have the broken retainer removed, to Best Buy to drop off my broken television for recycling, to the pharmacy, and to Walmart for groceries.  And, of course, having my hands shock me for 84 days at that point, going nuts dealing with that pain just makes everything worse.  Mostly, though, I have been felled by both my parents rejection when I asked for help with my medical expenses and the bad news about my lungs and eyes.  

I do want to think of something I can do next month to thank my doctor for being gracious about my grumpiness.  SIGH.

After the end of my 90-minute appointment, I walked outside and was shocked at how pitch dark it was.  And it was raining.  It was a bad day for my vision and, having started my journey home, became rather frightened about making it there safely.  I called my sister then Becky and then my  friend Mary trying to find someone to help me.  With six children at dinnertime, I thought it was a bit selfish of me to ask her for help, but I did.  But she, in a beautiful act of mercy, did help, staying with me on the phone as I drove through the rain, struggling to see the street signs and battling fear the entire way.

It was a long and trying day.  But I had the problem with my broken retainer resolved, I no longer have a television riding around in the back of my Highlander, I have milk milk enough to last through any snow in the next two weeks, I am ready to fill my two-week medication holders on Sunday, and I was blessed both by the care of my doctor and my very dear friend.  So, I am working on viewing it as a good day.

Is it even possible for any day you stock up on milk to be a truly bad day??

A small victory...

It is weird.  For the first time in 35 years, I can feel the back side of the front six bottom teeth.  I can do so because I had to spend $50 getting the broken permanent retainer removed.  I had the worst time trying to be civil to the woman who was tending to me because: 1) she talked so much, asking me dozens of questions and stopped working for her chatting and 2) she COUGHED ON ME the entire time she was working.  I fully expect to come down with germs in the next few days.  SIGH.

The other day my sister mentioned that her doctor once talked about our wandering tongues.  I just LOVE that phrase.  What he meant is that when there is something going on in our mouths our tongues just cannot seem to leave it alone.  My poor tongue has several wounds on it from wondering about and wandering all over the broken retainer until I could get it removed.  And, now that it is gone, my tongue cannot seem to leave those teeth alone!

The woman working on me commented on how good the back side of my teeth looked, something I attribute to using that wretched-tasting baking soda toothpaste.  But no matter how much I worked on brushing and dental-picking around the bar, when it was removed, I was left with quite a bit of plaque in a line above and below the bar on the back side of my teeth.  The teeth with the two ends cemented on them were cleaned off, but the four between were left alone.  UGH.

I used a free toothbrush there at the "rinsing station"—gone are the days of water and suction and a bowl beside your chair—but it was too soft to do much.  I also asked for floss and toothpicks because the back side of my teeth were driving me crazy.  Sadly, because my doctor's staff asked me to come early—unbeknownst to her—I went from the orthodontist to Best Buy to drop off my old television to the pharmacy to Walmart (groceries) and then to my GP's office.  So, no time to get home to my disgusting-but-awesome toothpaste and my electric tooth brush and, most importantly, my dental pick.

I am hoping to use a coupon for an economical dental exam and cleaning as soon as possible so that I can have a professional finish off the job I started on cleaning up that plaque.  At least I finally got all the cement grit out from between my teeth.  That stuff flew everywhere.

I had to sign a release acknowledging that I understood that my teeth will move since I did not have another retainer put back in my mouth.  The price was $260 for that.  At first, I was going to ask my sister to loan me the money until I could pay her back and then I looked at using one of those balance transfer checks that came in the mail the other day.  But the fact is that I have to move from trying to figure out how to pay for things to not paying for them in the first place.

Recently my sister put it simply:  You cannot do what you cannot do.

We were talking about medical expenses and choosing amongst those, but I need to stop trying to make things work the way that I have.  I do not need straight teeth.  I just need teeth in my mouth.  Hopefully, they will not move much.  So, instead of spending that $260 that I didn't have, tying up more and more of my grocery money down the road (I am already almost impossibly tight until April making up for spending at the end of 2017), I spent $50 just to have the broken retainer removed.

This month, aside from my slimmed down grocery budget and all my other fixed expenses, I have $188 to spend on non-budgeted medical, household, gas, and pretty much anything non-utilitarian that I need.  Although I am at the end of the second week of my budget cycle, I actually have not spent any of that money.  So, I could pay that $50.  And I will need the $59 that I think I will need for that coupon-dental-service.  That will leave me $87 still to address my needs the second half of this month.

As much as I am peeved about breaking my retainer after three decades, this is the first victory of the Great Recovery Budget Plan for 2018.  I will be glad when April arrives, though.  SIGH.


P.S.  I broke it chowing down on a chunk of French Bread.

P.P.S  My tongue is still freaking out over the back of my lower teeth.  Long lost friends??

Distressing news...

Tonight I made apple caramel cookies for my therapist's office, salted caramel cookies for my GP's office, and peanut butter cookie brownies and butter vanilla sugar cookies for my freezer.  I had been planning to make the latter two for myself for several days, but the news I've had of late just has me despairing and the new medication I am trying for the constant shocking pain in my hands has side effects that have made life rather difficult in the physical department.

I had planned on making the cookies for my therapist's office this afternoon, but the news I received this morning crushed me.  And I spent the afternoon sitting on the sofa weeping my tearless sadness.

I finally got up the courage to ask my parents for help with my medical expenses.  In part I did so because they are no longer paying to have my house cleaned since the woman who was leading my team left the job and there is no one who has another space in her schedule.  In part I did so because I keep thinking about the money they are sending my sister for my nephew's schooling and I asked myself what made him more worthy of help than me.

The answer I received was no, buried in some talk about having medical expenses of their own and my stepfather's retirement.  The thing is ... they have been taking vacations all over the world, having recently gotten back from Argentina, following trips to Peru, Ireland, and Japan.  They are in the process of sending $100,000 to my sister for my nephew's schooling.  They regularly visit my nephews, taking them on trips for Spring Break and having adventure-filled trips in the summers with them.  They regularly visit other family members.  And they regularly visit friends and take small trips such as to a spa retreat.  In short, my parents are wealthy.  It isn't that they do not have money with which to help me with my medical expenses.  It is that they do not want to help me.

I received the news this morning and couldn't get back to sleep.  All I kept thinking about is the wording of the decline of my request, just how much they have helped my sister over the years, and all the ways that they spend money.  It's their money, though.  I have no right to it.  I suppose I had no right to ask.  But I did.  And I hoped.

I have a plan for 2018 to make up for just how much I went about celebrating my 50th birthday since I was going to be the only one really doing so.  I have a plan that is doable as opposed to so austere that I will fail to meet my monthly budget goals.  But I also have a body that is failing me in ways that are troubling.

A while back, I was looking at something in my chart and I saw that I was diagnosed as Stage 2 Chronic Kidney Disease.  Call me foolish, but that is the first time I absorbed just how troubling my kidneys are and I understood why my GP was so put out over the ibuprofen I took with the plantar fasciitis even though I gave up the Celebrex during that time.  I also realized my willingness to go from 400 mg of Celebrex a day to 300 mg wasn't all that impressive in her book.  She's trying to save my kidneys while balancing my need for arthritis pain relief and I wasn't getting it.

I got it now.

Learning that I have venous insufficiency in my legs wasn't that much of a surprise because my cardiologist was so very certain that was the cause of the swelling I experience.  That and blood pooling when my blood pressure drops and my heart rate cannot keep up with gravity.  But I admit that I am rather used to test results coming back normal.

So, I suppose ... I suppose I should have been prepared for the high resolution chest CT to come back normal, too.  It didn't.

I have patches of groundglass opacities in the upper and lower lobes of both lungs, more so in the lower ones.  The impression was either infection (my white cell count is just peachy) or interstitial lung disease (something that can happen with Sjögren's Syndrome if you are unfortunate).  The latter is just plain bad news.

Now, there is this part of me that jumped up and down to have something measurable wrong with me, but mostly I felt punched in the gut.  I had bought into my rheumatologist saying it was my heart and my cardiologist saying that it was the strain of being vertical that is par for the course with dysautonomia.  He didn't even think I should bother with the CT, buy my GP still wanted it done (as did I).  I knew that something was going on between the shortness of breath and the breathlessness.  I just didn't want that to be the answer.

It is not a good answer.

Then I went to see the eye specialist thinking I would get a good report and was sucker punched again with the news that the dryness in my corneas is no better and is a tad worse in some areas.  I am to try adding a fifth type of eye drop to my regimen and to increase dosing my eyes to every hour.  She said, ideally, I should be putting in those drops every 10 minutes, but that is not manageable.  The next step will be to cauterize my tear ducts to try and keep more moisture in my eyes.

I have been so very overwhelmed thinking about adding one (most likely two and possibly three) more specialists to my medical team and any medications they might add to my list or tests they might order.  There just isn't room in my budget.  The increase in Medicare ate up nearly all of the COLA adjustment that I got this year after having things static for the past few years.  Where will I get the money for more medical stuff?

I learned that I can save money on streaming if I pay two of them annually and so I did and set up savings accounts so that when I pay them next year, I won't take a hit from those bills.  I realized that even for the small amount of Christmas things that I do (cards and a few presents), I need to be saving all year for that, too.  Another automatic savings account.  And I switched insurance companies saving well over $100 per year, but I had to pay the car insurance up front.  A third autonomic savings account set up.

Laugh if you will at all of my savings accounts, but I cannot handle any big bill in a month.  I need them all saved for and funds set aside for when those bills come due.  And I cannot think of a way to keep all the funds separate—saving what for when—if I just dump the money all in one savings account.  Fortunately, Capital One has the same rate no matter how small your balance and no limit on deposit amounts or the number of accounts you can have.

I should say that I cannot handle more than one big bill in a month and right now that one big bill is Parkview, the medical system where nearly all my appointments, tests, labs, and x-rays take place.

I have 2018 mapped out budget wise and, thanks to my electronic register, can tell you how much money I should have on any given day of the year.  I also have weekly budget goals estimated through June, estimating specifically what will be on my credit card, so I can also tell you on what days of the month I will be spending money.  The only real luxury I have is streaming, spending $44 a month if you include the cost of Amazon Prime.  That and groceries is the only place I have flexibility.

I know I dipped into my tiny retirement fund for my haven.  But I honestly feel no guilt over that.  My daily life is quite miserable on many fronts and I built a place that makes me soothes and strengths me when I seek solace there.  Having that is crucial to surviving.

But I am determined to only dip into that meager retirement fund for medical if I have a hospitalization.  I want to make medical work on my small disability income.  I want to make all my bills work so that I am not taking from the future to fund the present.  In the best of all worlds, I would be saving even more for the future.

But there's my blasted body with crap kidneys and crap lungs and crap eyes and a crap autonomic nervous system and a crap immune system.  I'm assailed on many fronts and hardly know how to fight.

My sister asked a question the other day, wanting to know if the thousands I spend on medical is worth it since I have incurable disease and conditions.  She surprised me and I thought that was a good question as I could see how that question could be in the minds of my family members.

I am humbled by my new GP and feel as if all the things she has done medication wise are geared toward making some things in my life better.  Some of the pain is better.  It is still present, but muted somewhat.  I've added a slew of mediations this year, but all are ones that have a measurable impact, save for the one we are trying out now.  And none of my doctor's are into testing for testing's sake.  I think we've been extremely conservative in that front.  I think the only extra spending I am doing is that the cardiologist would go to thrice a year visits, but I want to stay with the quarterly ones.  That means an extra $45 a year there.

So, I could answer her in the affirmative.  And her question was good in that I want to make sure that I keep asking it as I move forward, especially with how Sjögren's is ravaging my body.  Because, basically, I do not believe that going into medical debt is a wise course of action unless there is some life-shattering event, such as a car accident that is out of your control.  I don't believe in seeing any doctor without being certain of paying his/her bill.  The same goes with testing, imaging, and labs.

How do I pay for all the medical?

Devastated at my parent's response, I reached out to my sister.  Mostly, she just kept me company all evening, chatting about this, that, and the other, none of which having anything to do with medical expenses and asking for help.  But she did ask me how I felt.  It was hard to answer her and something she had said is what I was thinking, too.  But after I said that I felt worthless and unloved, she said she hoped that I could get to a place, beyond the hurt I am feeling now, where I could see that my parent's response has nothing to do with my worth as a human being.  Normally, I want to scream:  GIVE ME TIME TO FEEL WHAT I FEEL.  But her saying that I am not worthless was helpful to hear.  Something I think would help to hear more often!

My parent's decision not to help me when they clearly could do so is not a reflection of who I am or what I am worth.  My sister's emphatic statement with those two points was a balm to my heart.  But I am still feeling what I am feeling.  I am still so hurt and still wonder why I am not worth such a small fraction of the help my sister is getting for my nephew.

But I suppose that hurt is sitting on a foundation of hurt that my family, aside from my sister, has not taken the time to learn of the things ravaging my body and making life so very, very hard for me.  I want them to care and to support me in this battle that I am forced to fight.  I want to not be the only one managing all the medications and weighing what to take or do medical and what to not pursue because of cost or return on investment.  I want the words dysautonomia and Sjögren's to be their words, along with all the words that fill life in both of those worlds.  Instead of "How are you doing?" I want to hear "How was your last doctor visit?" or "What is your testing showing these days?"  "Or how is your battle with PTSD going?" or "What are ways in which I can support you?"

I want a Team Myrtle and I want my family to be charter members.

My therapist and doctors keep asking about Team Myrtle.  I mention Becky's help with filling my medications and my friend Mary's reframing of troubling things from therapy and Amos' love and affection.  They sigh, saying that's not really a Team Myrtle.  I know that.  But I cannot make my family care.

SIGH.



On a separate note, before I forget, I want to say that this is the first year that I had a lot of Christmas cards.  My dear friends all sent ones and some of my family.  I was surprised and heartened and have savored looking at them up on the plate rail in my dining room.  I didn't realize that Christmas cards could be such a comfort.  I am deeply, deeply grateful for all of them.

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.