Tuesday, October 31, 2017

Shocking, shocking, shocking...

Being constantly shocked in my palms and fingertips is driving me NUTS!

I just do not know how to handle it.  I mean, Electrician Man came today to service the HVAC and Firewood Man came by to mow.  Having folk to interact with helps distract me for a while.  But when I am alone, which is almost all of the time, I struggle to ignore the pain and the ... jerking.  It is hard to use the computer and the phone and my Kindle.  It is difficult to concentrate enough to stream something.  It is near impossible to sleep.  It is just ... shocking ... shocking ... shocking ALL THE TIME.  SIGH.

I am horrible company.
I am horribly grumpy.
Life is horribly bleak.

Friday, October 27, 2017

Slow innards...


The neuropathy in my arms and hands continues, which has made just about everything impossible.  Okay, not impossible, but definitely difficult.  Typing and using the touch pad and using my phone ... I jerk and jerk and jerk and end up with a colossal amount of mistakes.  SIGH.  Plus, well, it just drives me nuts to be continuously shocked.  I cannot tell if the shocks are slightly less or if I am growing used to them.  SIGH.

The visit with the cardiologist was ... interesting.  He is super, super patient with me and answered my gazillion questions, some of them several times until I could understand.  Some of the answers, I understood, but I just cannot repeat.  One of them made sense ... maybe my oxygen sats are not as low as my pulseoximeter, because maybe the capillaries in my fingertips have shut down because of a reaction to the exertion.  He doesn't know that, but it could be an answer.  The thing is, we just don't have enough answers.

I started experiencing a new symptom that I am calling breathlessness.  All of a sudden, it feels like there isn't enough oxygen in the air anymore.  Like I am breathing another gas or something.  Usually, it passes quickly, but it is rather disconcerting.  My cardiologist thinks the shortness of breath with exertion and the breathlessness are connected.  I think he thinks that it is lungs not heart, but I wasn't quite straight on that.

The doughy swelling in my legs at night, he suspects my be because of the valves in the veins in my legs, so I am having a test for that in December.  I brought him a photo from Tuesday night, because the elephantine size of my legs, ankles, and feet scared me.  My right is worse than my left.  I just don't look at my feet much.  But when I did I gasped.  I was really, really, really grateful that I only had two days left until my cardiology appointment.

As far as the breathing, the pulmonary function tests say two things:  1) I had good results for having asthma.  Great results, even.  2) They show a restriction and something else I just don't understand that has to do with diffusion.  I'm not taking in enough of a breath is the restriction part.  Is it Sjögren's?  Is it the weight gain?  Is it asthma?  Is it dysautonomia?

I think I got that he thinks it might be reactive, which could mean dysautonomia and thus harder to pinpoint and maybe treat.

I mentioned to him that the integrative medicine specialist asked why I am no longer on the theophylline since it helped my asthma so much.  I told him that I told her that I didn't think that I could go back on it.  His response was interesting in that he did not agree with that.  Maybe I could.  Or maybe we needed to attack this from a non-traditional direction.

I practically didn't have asthma any more on theophylline.  So, I'm up for that, if there was a way to control the wild reactions I had in my blood pressure and heart rate at times.  Also, frankly, theophylline would be cheaper treatment for me.  Well, cheaper in that I wouldn't be on traditional meds.  But I would be paying for it, whereas I do not now being on medication assistance programs from the manufacturer.

One of the highlights of my visit was when I shared my FitBit data about the increase and subsequent decrease in my resting heart rate.  I know doctors can be dismissive of Fitbit, but I thought the graph could help show this rise of heart rate overall.  Low and behold, the pacemaker data showed the same thing!  Fitbit shows the peak October 8th, but it was really the 10th.  And it shows a greater intensity in increase a week around that date.

With dyautonomia, you generally get a whole lot of normal test results, save for the tilt table test.  So, you get a whole lot of "crazy" diagnoses.  "Psychosomatic" comes up a lot.  The way I like to describe it is that those tests are often looking at the organ and not the nerves controlling it.  And it is the nerves that are the problem.  Nerves a whole lot of medical personnel forget about, ignore, and even dismiss as real.  SIGH.

With Sjögren's, I am getting abnormal results, which is a bit of a relief.  Only the syndrome is unnerving and makes life ever so difficult.  It is unfamiliar and difficult to manage.  I hate it already and my diagnosis is not even a year old.  SIGH.

So, back to the breathing issues.  My cardiologist wants me to do a cardiopulmonary stress tests, which takes place on a bike.  First, that is a problem because of the pudendal neuralgia.  But I will sit for that.  Second, biking is just not that stressful to me.  It is not the effort that standing and walking is.  I am just not sure we can get the data he wants on a bike.

My idea was to go home and do a session on my recumbent bike to see if my oxygen sats drops.  I tried different settings, mostly because I figured I would need to be able to sustain the biking.  At the middle tension and 12.5 miles an hour, I got my heart rate to the 120s, but my sats only dropped to 92.  I do not think that that is enough stress.  I sent him the data, per his request.  So, I am waiting to hear back from him.

In sum, I was reminded that I am incredibly blessed by the care of my cardiologist.  He is very, very knowledgeable about dysautonomia and is the paragon of patience.  I am trying to get better at being the patient of a male doctor.  SIGH.

Thursday night, I had dinner with my realtor after my cardiology appointment.  Unfortunately, after that my stomach stopped working.  Another gastroparesis flare.  It's been a while since the writhing has been this bad.  Here I am, more than 24 hours later, and that dinner is still sitting there.  Such misery.

It's been a long, long few weeks for me.  Many appointments and yet no real answers.  I very much dislike breathing issues, for they deeply frighten me.  Swallowing.  Breathing.  Chest pains.  The symptoms that strike the deepest fear within me.

More blood work on Monday.
I don't do mornings well.

If only my stomach would start working again.  Slow innards ... UGH.

Monday, October 23, 2017

I cried today...

I had a terrible migraine last Wednesday evening.  After taking my meds and finally falling asleep, I awoke with the neuropathy I think I've described:  pain radiating down the inside of my arms to my fingertips.  A pulsing, electrical pain.  A pain that over the weekend intensified into electrical shocks that make my hands jerk.

I am not able to type without lots and lots and lots of mistakes.  It is hard to use my phone because my fingers are jerking against the screen.  I keep selecting things I do not want.  I am mighty frustrated and in quite a bit of pain.  Sleeping is also rather difficult.

Tonight, I have been struggling with my breathing.  I feel short of breath even though I am not short of breath.  When I check, my oxygen sats are low.  I do not understand what's wrong, but I will be at a doctor's office tomorrow, so I can ask.

I see the cardiologist in just two days.  Even though the shortness of breath upon exertion has gotten better and my resting heart rate that had elevated 30 beats per minute is now back down, I am, as of tonight, glad only two more days remain before that appointment.  Even though I don't think I have the data for him to collect on my body anymore, I have QUESTIONS that I want to ask.  First with the exertion and second with the breathlessness.  SIGH.

I did want to share something that I read from a child sexual abuse survivor:

I cried today because even though the abuse has stopped I'm still affected
I cried today because I've been strong for far too long
I cried today because he could be out there hurting someone else and I was too ashamed to stop him
I cried today because my innocence was stolen before I was ready to give it away
I cried today because I will never know what normal is
I cried today because who I am is not who I want to be, and who I want to be is too hard for me to be
I cried today because through all the suffering I am a survivor

I think do not think of myself as a survivor, nor do I think of myself as having been strong.  Mostly, because I keep getting this pushback that I should be "over that" by now.  I am not.  Over it.  I do not think I will ever be, but I hope that I am better at coping.

What struck me most are two lines:

I cried today because I will never know what normal is

YES!  I want to scream and weep, though I have no more tears.  It is difficult for others to understand.  I do rage, at times, that I will never know what normal is.  It is an ache and a longing that I oft think will shatter my soul.

I cried today because who I am is not who I want to be, and who I want to be is too hard for me to be

YES!  I feel ever so much pressure to not be who I am, at least in regards to an adult survivor of child sexual abuse.  I do not much like myself for a plethora of reasons, but chief amongst them is not being the person that I know I should be.

I cried today  ... not with the tears Sjögren's stole from me, but with my whole body.

Thursday, October 19, 2017


That crazy weird neuropathy is driving me NUTS!  Never mind the burning, stinging electrical pain running down the inside of my arms past my wrists to my fingertips. When you feel something like a static shock, you tend to jerk your hand away.  So, I have to constantly keep myself from jerking my hands away.  Plus, when I am scrolling in my laptop, my fingertips jerk against the mousepad and I end up clicking on things I'd rather not.  This is just ... too much.

I continue to feel so very STUPID about the phone.  I mean, I know I wouldn't have known about the service coverage if I didn't try, but I just think that if I had done better research I could have learned about the importance of having a phone optimized to the service you choose.  It really is best to have a phone sold by that service because you have the best antennas for that service ... or so it seems by my two attempts to use the SIM free phone.

What I do know is that with Sprint I had no problems talking on my phone wherever I needed.  The data was not the best, but I don't need data all that often.  I haven't used more than 1GB a month.  Mostly, I keep my long rides on the data train for whenever I am on a wi-fi network.

So, $115.23 later, I have ended up trying to get service back with Sprint and getting a phone through them, having lost my phone number in this process.  SIGH.  I cannot get the $56 for Straight Talk back.  I am hopeful $25 of the $26.75 for the T-Mobile SIM card might come back through an account credit on my friend's bill.  But the $32.48 for the booster doohickey that was not supposed to be charged to my card, it turns out, doesn't seem to be coming back to me because the only way to refund the deposit part ($25 ... the salesman did not tell me about the other $7.48) is through an account and I don't have an account with T-Mobile.  It should have gone on my friend's account, but it didn't.  SIGH.

So. Very. STUPID.

It is my fervent hope that the Sprint phone comes before Monday because I have to send the Apple phone back.  I don't want to be without a phone at all.  SIGH.

This past week, I have deeply missed having a landline.  Firewood Man left on a trip this morning, but last night he stopped by to bring me some wood so I could enjoy a fire as the weather cools in the near future.  Being the merciful man that he is, Tim stayed for a long while to be my landline so I could try to figure out the problem with Straight Talk (I need a Straight Talk phone basically to make the voice mail work).

It struck me, then, just how much Tim does for me, helping when and where he can.  We are not family.  We are not really friends.  But he helps me as if I were both.  I mean, he is a service man for me, but he also does things like bring me wood for the first truly cold nights.  And, a couple of weeks ago, he fertilized my yard for me, knowing that some GREEN grass would do my heart some good.  my yard is GREEN now!  There is some grass seed growing where he finally got a chance to remove the mound of dirt left over from the excavation work on the sewage line in February 2016.  No more grave in my yard!  Anyway, I guess you can say that he's claimed me as his neighbor.

Such goodness God has brought to me through that man.  The interesting part, to me, is that Becky found him for me.  The first man I had bringing me firewood was ... cruel.  He would leave me feeling wretched.  Becky finally stepped in and told me that I didn't have to take such behavior from the person bringing my firewood.  She went looking on Craigslist in my area and found Tim.

I think I've said this before, but Tim stopped selling firewood.  He chops trees for himself and for me, telling me I can have as much as I want.  So. Very. Blessed.

I know that God has blessed me through my friends, the ones who have stuck with me despite the illness and the misery and the spiritual anguish.  Despite my utter brokenness.  I know that.

But do I believe?

I doubt that every day.  Every. Single. Day.  Not looking to my faith as evidence of faith, but questioning what is it that I believe.  Do I believe that Jesus is the Son of God?  Yes.  Do I believe He died to save the world?  Yes.  Do I believe that He died for me?  Honestly, no.  What could possibly cover my past?  What could possibly cover the utter hatred I have for my body?  What could possibly cover the doubts I've been struggling with ever since I stopped ... being able to keep hidden all the things of my past?  What could possibly cover the deep and abiding fear that leaves me quaking in my very soul?  What belief have I that atones for such filth, such hatred, such doubt?  SIGH.

My dear friend Mary listened to me bewail my misery and fear today and tried to speak the Gospel to me.  I think she said that Jesus died for the futility of the world.  And so He died for the futility I see in my life.  I think that was the word ... futility.  I love words.  It is something that we share between us, something that I cherish.

Sitting here, writing this, I thought of another word:  fragility.  Did Jesus die for the fragility of the world?  Did He did for my fragility?

Tuesday, October 17, 2017

Blasted SIM cards...

I read this article today on Facebook that sort of punched me in the gut.

I could tell you about a dozen things that I loathe about myself.  Truly loathe.  Not just ... oh, I wish I was _____ talk ... but loathe.  The article popped up like this ginormous mirror that I could not avoid.

"When Anxiety Presents As Anger" could have been written by me, well not me because my micro meltdown today at T-Mobile store was not as self-aware as the author seems to be.  It was my fourth trip in a week.  And it was another brick wall against which I banged my head.  But I still wish I would have been ... more gracious.

I want to scream and shout and stamp my feet and roll around on the floor flailing all my limbs.  IT'S NOT BLOODY FAIR!!!  My dear friend and her husband offered to put me on their plan so as to free up my phone cost for medical.  I called them my Medicare Supplemental Insurance Plan.  Only it turns out that T-Mobile is not good service for an iPhone in Fort Wayne.  I have no service in my home, at one of the hospitals I visit, and at my GP's office.  Oddly, I did have service in Walmart, even though it appears that T-Mobile on a SIM-free iPhone doesn't want to work inside a building ... except for Walmart.

After the pulmonary function testing, I came home needing to DO SOMETHING.  I kept thinking about how I couldn't use my phone at home without a wi-fi connection and I thought it was just plan stupid of me for trying to make a dismal service work for me just because it is free.  As much as I need that financial help, I need to have a phone that works in my house even if the Internet is out!  Without a landline, cell service is crucial.

So, what I did in my need to DO SOMETHING was to get what I thought (and now fervently hope) I needed to switch from my week of T-Mobile service to Straight Talk.  That was the service I thought I would do because it is $12 less than what I was paying with Sprint and it is the service Becky had when she visited me last.  It was the service she had when she came to get me through the pacemaker surgery and was driving out and about for me.  It was good service and I thought it would be sort of risk-free in trying.  It was my plan before the offer of free service came.

Now, Becky has also experienced terrible service in the same areas her husband's Android phone works just fine.  I thought it was something that just needed to be adjusted on her account.  In truth, I sort of blamed Becky for not working the problem.  Hah!  Oh, how the Lord smote me in that!!  There is no working of the problem.  The Bring Your Own Phone program with T-Mobile leaves much to be desired.

In switching phones, I purposely  bought a SIM-free phone from Apple because it angers me that my iPhone 5s from Sprint can only be used on Sprint even though it is unlocked and now owned by me for over two years.  I couldn't even use it on Boost Mobile, the pre-paid service that runs on Sprint's network.  Only I don't really know what SIM-free means and it seems like having a phone optimized for a service is the better approach in cell phones.

I've got 7 days left to return the iPhone if that is the course that I should take.  Should I get just get an iPhone through T-Mobile?  Should I return the phone and get a replacement, in case it is the antennae?  I know that it is the Qualcomm chip thingamajig, so it is the better un-attached phone.  But this whole SIM-card world is not for me.

I tried to port my number from T-Mobile to Straight Talk.  Who knows if I did it correctly.  Right now, I'm in this limbo land where the T-Mobile SIM card works and the new Straight Talk one doesn't.  I had to buy the $45 plan for the first month even though I want the $35 plan.  I am crossing my fingers that I can switch after 30 days.  But, instead of being smart about this, I opted to try to port my number.  What I should have done is gone with a new number.  Now, I'm in limbo.  Who knows if I did things correctly.  It's 10 hours later and the T-Mobile SIM card is still working.  The new one has "No Service" on it.  Becky (and the Straight Talk website) says that this will take a while.  But when I ported from Sprint to T-Mobile, it took mere minutes.

I think if I had signed up for a new phone number, I would know right away if I bought the right kind of SIM card and if it is working.

It is extremely NERVE-WRACKING to not know if you blew up your cell service or not.  If the T-Mobile SIM card stops working but the new Straight Talk one doesn't start working, I won't have a phone to call customer service!  I think I could get my realtor to come over and let me use her phone, but I am not certain.  And I've been too chicken to ask.

I have been ... well, I feel as if I am shattering, as if all these pieces of me are flying outward and I'm unable to hold enough pieces of myself together.  I am worried about the shortness of breath.  I am even worried about how it is getting better.  I am worried about the one segment of the testing today that I failed.  I am worried about potentially meeting a new specialist.  I am broken by this question in therapy that arose a couple of months ago that is rattling around my being.  And I am crushed by something that happened with my family this week.

This whole evening, as I checked the service on my phone a million and one times, I also found myself shuddering and shaking and being on the verge of a flood of tears save for the whole dry-eyes-Sjögren's thing that means I no longer cry.  Pain wells in my eyes.  My face turns read.  I shudder.  And my entire being is melancholy.  But no tears in my eye.

I found myself huddled over, clutching my midsection wanting to wail, but somehow silenced.  I am so fractured that I am even more frightened about that that about the barbecue ... no, not barbecue.  Oh!  DARN IT.  A migraine is starting and I cannot finish this.  I cannot think of the words for the greater fear.  But I want to post anyway. Post that I am frantic and frenetic and thrumming with an upsettedness that has bowled me over.  SIGH.

Maybe my migraine meds might send me into the slumber that eluded me nearly all of last night ... and I'll awake to find the port finished and the new service working on my phone.  A girl can dream, eh?

Sunday, October 15, 2017

Culinary labors...

Tomorrow, the maids my parents have clean the house once a month are coming, so I had a deadline of procesing my dried herbs.  I do not know how others do it or how I should be doing it, but the way I do takes forever.

This is over three hours worth of work.  Stripping the leaves and then ... crunching them down from a large bowl to what will fit into the mason jars.  From left to right, I have sage, thyme, oregano, and dill.  The dill is this German dill that I tried this year.  I adore it.  Can you see how brilliant GREEN it is even after being dried?  I wish I had enough for the larger jar, but I only grew one plant this year.  Next year, I shall be planting two of them!

The other goal I had for this day (well, I had two more culinary ones but grew too tired for the second) was to make some more chilorio.  Of all the recent recipes (as in this past year), I think that I like the chilorio the best.  Or it is definitely in the Top Five list.  I do like it as I have been eating it, on a fresh tortilla slathered with avocado mash, but I think it would be tasty as ... well ... as someone would eat barbecue.

You start by cooking the pork in a combination of orange juice and water.

Whilst the pork is cooking, you make the ancho sauce.  These are the peppers when you first start prepping them, remove the stem and seeds.

This is the peppers after you have soaked them in water you brought to a boil.  That's some of the water there on the right, because you use it with the ancho sauce.

This is the sauce.  Impressive, eh?  You put the peppers, soaking water, apple cider vinegar, onions, garlic, cumin, oregano, peppercorn medley, and parsley (I use Gourmet Gardens Parsley Paste).

To finish things off, you take out the pork and reduce the remaining liquid.  Then you pull the pork and drizzle it with the reduced sauce.  Next, in the same pot that you cooked the pork in, you heat olive oil and then pour in the ancho sauce.  After it cooks for a while, you add the shredded pork and cook it until the sauce is ... absorbed.

Mmmmm!  Tasty!!

Today, I started upping the baclofen.  I had put it off for a week or so because I knew I would be bowled over by massive headaches, dizziness, and drowsiness.  I wanted to sort of gear myself up for the increase, even though I want help with the neuralgia flares.  Nerve pain stinks!

The headache has started.  I know the side effects will ease as I get use to the dosage change—at least they have each increase thus far—but it is difficult to endure the side effects with all the other symptoms I have to swallow in this chronic life of mine.  SIGH.

It was good, though exhausting, to distract myself with some culinary labors.  I do so relish the idea of growing my own herbs and the sight of those jars tickle me pink.  Now, I just need to remember to buy an avocado so I can chow down on the chilorio I made.

Mmmm!  Tasty!!

Saturday, October 14, 2017


Someone I follow on Facebook posted the following:


Today, I was listening to a conversation on the radio between a man and women concerning the Weinstein sexual assault accusations. She mentioned that she didn't like it when a man hugs her during a greeting, but she never said anything.

Over the years, my [wife] and I have hugged hundreds, maybe thousands of our customers, friends, and acquaintances that we liked and felt comfortable with. After listening to the radio today and seeing what Weinstein had done, I'm feeling like I owe an apology to those I may have hugged and were offended.

I hug many people, even men. (Man Hugs) with no disrespect intended.If I didn't have respect or admiration for you, I wouldn't even take the time.

This being said, if I or [my wife] have offended anyone, please accept our sincere apologies.

Out of 34 comments, only three acknowledged what he was saying as important.  Most were saying his hugs were fine and not to worry.  Many were about how intentions matters so folk needed to be able to recognize that.  In most of the latter posts, not wanting a hug was seen as ... anti-social ... as wrong.  

When I see such comments on social media, it fells me.  It hurts and hurts and hurts and I can barely breathe.

Today, a friend posted this article about a woman who is on a mission to tell her story.  A story where she was a sex-slave.  In America.  Beginning when she was twelve.  Twelve.

Her brother-in-law sold her from her home .. because her own mother sold her to him.  By day she was another young girl going about her life and by night she was a sex-slave.  No one at school knew.  As she says, "a pimp doesn't necessarily wear a big hat with a feather, and pedophiles aren't necessarily 40-year-old men who live in basements."

She says all the signs were there for folk to know what her life was like, but no one looked. She is sharing her story so that folk can learn to do so.

Reading the comments on that man's post made me rather cynical about her prospects.  Nearly all of the commenters rejected the very idea that his hugs could have been troubling to another.  They rejected the idea because he was a good person.  They rejected the idea because no one should be troubled if the hug was well-intentioned.  They rejected ... me.

They rejected my pain, my shame, my PTSD.
They rejected my fear, my sense of being trapped, my trigger.

Mostly, when I think about the things inside me, I believe there is no place for me in this world.  When I read comments like the one on that man's post, I am convinced more than ever that that is true.  When I read about that woman's horror, I know that that is true.

The world turns away.
The world doesn't want to know.
The world silences such stories.

I would add one more point about his post.  The man's response apologized for those who might have been offended by his hugs.  Perhaps ... perhaps those who do not like hugs in general it might have been offense.  But I would proffer that for those to whom he was addressing, those like the woman he heard on the radio, it wasn't offense, it was hurt.

Force me to endure something I do not want and you are hurting me, deepening the wounds of my past.  Even if it is just a hug.  Even in church.  Especially there.

Friday, October 13, 2017

Not what I wanted...

Half of me remains convinced that the huffing and puffing is because of Dyautonomia.  Half of me is still rather worried about it being otherwise.  Half of me is clinging to my GP's optimism.

Today, the visit with the rheumatologist went mostly as expected.  Her part of my blood work is what she would expect to see.  I am to repeat it and come back.  She gave me another eye drop option, but it is brand new and rather expensive.  I have made do with the Restasis primarily because you can stretch out each vial for many days, as long as you do not touch the tip to your eye and you keep it in the refrigerator.  I could do without the constant burning and stinging of the medication, but it has greatly helped the dryness in my eyes.

But the very minute she walked in, my doctor said, "So you've been short of breath?"  I nodded and told her about the pulmonary function testing next week.  "It's not your lungs. It's your heart.  When do you see the cardiologist?"

Gut punch.

Whilst I was sitting there, she fired off a note to my cardiologist, asking him to review the blood work, and I found myself worrying anew all over again.  She was very firm in her opinion.  SIGH.

I like my rheumatologist, even though she is pretty much the antithesis of me.  I am loquacious and she is taciturn.  But she reviews my chart before I arrive, reviews the test information, listens to me, takes notes on what I talk about, and dictates her chart note whilst I am in the room so that I can hear here.  Hers is the quickest doctor appointments I have and yet I do not feel as if I am being overlooked or neglected.

I like her.
But I am worried.

Something I have noted, though, is that in the past few days, my rising resting heart rate has been coming back down.  The graph is a sharp upward trajectory, with a steady decline past the peak.  It looks like a mountain.

I sort of laugh at that.  By the time I see the cardiologist, my huffing and puffing will be all better.  I should have made a stink about going in two weeks ago.  Don't get me wrong, I am glad that I have had less pain on the treadmill the past couple of days and walking up to my bedroom is a smidgeon easier.  However, whatever is happening I would like documented.  Not for ... proof ... but so that the next time this happens—if the shortness of breath is easing—I will know what is happening and if there is any treatment.

But I might be getting ahead of myself.
There could be much huffing and puffing still to come.

I had worked up to 35 minutes on the treadmill, but I dropped it down to 20.  I read that anything less than 30 is useless, but I am hoping that having my hear rate so high means my 20 minutes are useless.  I just cannot torture myself a minute past that mark.  I keep walking, though, because if I stop whilst I wait to learn what is going on with me, I am most certain I will never start again.

The appointment was hard because her words were not want I wanted to hear.  I wanted her to echo the cautious optimism of my GP, so I could gather their hope around me like one of my weighted blankets.  I have not worried as much as I have been save for the weeks before the pacemaker surgery, when I worked at saying goodbye to folk.  I have been so worried that I have lost four pounds in the past week.  That is a bloody miracle, but I am sure worry weight loss isn't permanent.

Ever since I was put on the theophylline, I have not felt hungry.  It is a side effect of the drug.  I thought that, once I stopped the medication, feeling hunger would return, but it hasn't.  Every now and then, I feel a bit peckish, but no real hunger.

I often say, these days, I spend so much time being pummeled by violent waves of nausea that I want to eat as much tasty food as possible when the nausea subsides.  But ever since I saw my blood work posted a week ago tonight I have lost that ... enthusiasm ... for tasty food.  I have found myself sitting and thinking and worrying until hours and hours have passed.  I am so alone and so scared that I do not have room for reading or music or streaming.  I am completely and utterly overwhelmed.

As I said, I am nearly certain this is the dysautonomia.  But, if it is, that means that it is yet another new normal that I must somehow learn to accept ... and endure.  That thought is what has me so completely and utterly overwhelmed.

You see, I don't think it is my lungs because none of my current lung medications help.  If it were Sjögren's damaging my lungs, I think the x-ray would have shown something.  If it were neither asthma or Sjögren's, then, again, the x-ray would have pointed to crappy lobes in my chest.

I don't think that it is my heart because my GP spent a long time listening to me last Friday and because the x-ray shows a normal size and does not show any fluid loading.  Anything more serious with my heart would have, I believe, other symptoms than merely shortness of breath with exertion.

I think it is crappy nerves doing crappy things and messing up my normal function.  And, frankly, I have absolutely no room on my plate for another new normal.  None.  Zero.  Zilch.

What I heard today was not what I wanted.
Not at all.

Thursday, October 12, 2017

Another injury...

One of the things that I do not believe I have written about is, recently, finding myself with injuries without any knowledge of how I got them.  One of the ones that has puzzled me the most is a cut I got on my right leg that is deep enough to result in a scar.  I got it sometime this summer (I cannot remember when) and whenever I see the now scar, I wonder just what happened.

Well, my left foot has been hurting for a few days.  I cannot thing of anything that I did that might hurt it.  It is hard to describe, because it mostly hurts on the bottom of it, but more diffuse as I walk on it.  Hobble, really, though I have continued to walk on the treadmill.

So, when I awoke today, and about near screamed with my first step, I thought to actually look at the bottom of my foot.  It is bruised!  I mean, gee!  There must have been something really ... hard ... to bruise the bottom of my foot that way.  I must have stepped on something really hard to bruise my foot so and to have it hurt this much for so many days. But I don't remember doing that.

Only blankness.

I know that there have been a few other injuries, but I do not remember them.  SIGH.  Today, I answered a question for the therapist from last week, only I couldn't remember the why behind the question.  Why I was so deeply distraught the week before.  I worked on answering her question and didn't work on trying to remember.  After all, surely I would that.  But no.

Only blankness.

I really wish I knew what caused this latest injury.

Tuesday, October 10, 2017


Friday night, I received rather distressing news in my blood work results.  At least to me it was.  Three of them—tests looking at inflammation, tissue damage, and heart strain—were all high, one of them seemingly really high.  All this huffing and puffing I am doing with exertion was bothering me and now it is really worrying me.

On Monday, I learned that my chest x-ray was normal, which is good news.  No obvious signs of heart or lung involvement.  Before seeing my GP, I had figured the huffing and puffing was either my heart, lungs, or dysautonomia.  I have been deeply despairing because I am convinced that it is the latter.  And if it is the latter, like the dysphagia, there is nothing to do about it.  My asthma medications are not helping.  I cannot think what could, though I am not a doctor.  And this is a new normal that I have not been taking well.

The most distressing part of my visit with my GP on Friday was that she noted a fourth option:  the huffing and puffing could be lung damage from Sjögren's.  SIGH.  I have been worrying about that ever since the blood work was posted to my chart.

In the wee hours of Monday morning I wrote a rather pathetic message to my GP, asking her to look at the results posted to my chart and help me understand how they should not worry me, since she has been really good at speaking calming words on things that have worried me in the past, either reframing things or explaining why I should remain hopeful.  She is talented in that way.

At 2:35 in the morning, today, I received a message back from her explaining that, whilst the results were of a concern, they were not yet the worry that I was carrying.  For one, she said, on the heart test, if I had bad damage the numbers would be even higher.  The tissue test, too, could be much worse.  The inflammation test is the one she said she would leave up to the rheumatologist to interpret.  But what I should do is focus on the fact that we just do not have enough data yet to truly worry.  That means I am to wait for that data.  The 13th is my appointment with the rheumatologist.  The 17th is my pulmonary function testing at the hospital.  The 26th is my appointment with the cardiologist.

So, this is me waiting ... trying not to worry.
Go ahead and laugh.

Thursday, October 05, 2017

Not quite five...

I have been wanting to do a bit of baking, to continue re-filling my larder.  Not really wanting to think about the session today and the appointment with my GP on the morrow and inspired by a recipe my dear friend Mary mentioned on the phone to me, I set out to see if I could do five bakes in an evening.

I know.

I think I could have made it, had I not crashed and burned three times on the first of the two new recipes that I wanted to try.  Math was my nemesis yet again!

Personally, I think that the baking world—at least the bread world—is prejudice against the single baker.  I say that because nearly every bread recipe that I have wanted to try is a double batch.  Trying to do the math to have the recipe is oft beyond me.  In the recipe I tried and failed and failed and failed and then succeeded at tonight, I had to halve 1 and 1/3 cup.  So, 1/2 and 1/6.  How to get to 1/6?  Tablespoons in a cup.  Teaspoons in a tablespoon.  Eight teaspoons.  So the answer is 1/2 cup, plus two tablespoons and two teaspoons.

But I should start from the beginning:

I wanted to do one of my dessert mixes, particularly the white chocolate cranberry cookies one.  I love the mixes because I don't have to worry about messing things up save for cooking them.  However, they do not have a high yield.  This one netted just 16 cookies.

Next up was a batch of my beloved baked oatmeal.  Since I have one every morning, I have to cook them every 18 days.

After that, I tackled Irish Soda Muffins.  I have not made them in ages, but I have been thinking about how much I like them for the past couple of months.  They were every bit as tasty as I remembered!

Fourth was Mary's recipe:  Colonial Brown Bread.

I would call this Brown Sugar Buttermilk Bread.  But it is not my recipe.  As I mentioned above, the math felled me.  I wasted ever so much whole wheat flour, all purpose flour, salt, baking powder (which isn't even in the recipe), baking powder, and buttermilk.  Thankfully, the later was only wasted once.

I will never rely on mental arithmetic again.
I will never rely on my own recipe conversions again.

The quick bread is close-textured (I learned that watching the "Great British Bake Off") and moist.  It is sweet and sort of nutty.  Mary told me to have it warm and with butter, so I slathered on some of my beloved Pulgra European butter.  Mmmm!

I think it was worth the steep learning curve and will be a new favorite of mine, too.  I think it will be a good dessert or a snack.  I am wondering what it would be like in the toaster even!  The original recipe suggested topping a slice with cream cheese.  But I am not all that interested in tasting that!  Maybe toasted, though ....

I am so very glad that Mary mentioned this to me!

The fifth recipe is one that I have been drooling over for a few weeks: Lemon Greek Yogurt Pound Cake.  I am hoping to get that done tomorrow evening.  But I am worried about how the appointment will go and how I will be afterwards.  You see, I've been huffing and puffing more and more and more and need to bring that up, even if I am distressed about yet another way in which my body is failing.

And I have also to face my latest kidney function blood work.  Despite lowering my overall dosage of Celebrex, the results were worse than before we made that change.  ARGH!  I cannot fathom a life without Celebrex.  It is the only arthritis medication that has helped me.  What kills me is that ibuprofen is the only thing that knocks out my headaches.  I have not had a single pill in three months, choosing instead to endure the headaches so as not to add to my load of NSAIDS on my kidneys.  To me, that sacrifice was in vain.

I am really, really, really worried that instead of lowering my dosage again, that my GP will say that it is time to give up Celebrex.  I know that day is coming, but I think it should be a long way off still.  And, sadly, we do not have a PLAN for post-Celebrex arthritis pain management.  That terrifies me and I try not to think of it much.

Anyway, so as to avoid thinking about my session today and my appointment tomorrow, I baked up a storm this evening.  Not quite the five bakes that I had wanted, but a goodly step forward in my efforts to have a full and varied larder for the times in which I am too weary and/or ill to do little more than warm up something to eat.

Wednesday, October 04, 2017

Bad day...

I had a bad day yesterday.  If you are a fan of "Crimes of the Heart," then you know what I mean.  That is sort of a life movie for me.  It is one, too, that I can mention to my mother and my sister and they will mention a scene or a line and we'll chuckle.  I don't know if they would really understand what I mean by having a bad day.  I know it is not something that I can even broach with my mother, but I have tried to be more open with my sister.

I had a bad day yesterday.  I was so very sad.  I could come up with several reasons why, and I voiced them as reasons because I couldn't say why I was sad.  I was just near inconsolable over something I couldn't even pinpoint.  As the day wore on and my sadness overwhelmed me, I called my dear friend Mary, even though I knew she was probably having dinner, and asked her to pray.  And I reached out to my dear friend Becky, hoping we could talk some time in the evening.

Mary had a few moments to spare and I tried to control the shaking in my body and the sadness.  And I told her all the things I had tried to tie to the sadness.  Mary observed that I might be grieving for the world and the terrible dark times we are enmeshed in call for grief.  I love that she talked about the darkness of our world, because I feel like it is being ignored in all the blame flinging.  And I do find great sadness in things in our world, especially my country.

It grieves me, especially, how sexual assault has become such a common weapon of war.  It grieves me deeply that even UN peacekeeping troops use this weapon and little is done.  It grieves me the silence—across the globe—regarding the aftermath of living with sexual assault.  It isn't just adults.  It's children who bear those wounds of war.  The enormity of it all overwhelms me.

I grieve the sexual abuse of children that happens all day every day in our country.  I grieve its silence.  I grieve the lack of help for those victims.  I grieve the adults they grow up to be bearing those wounds.  I grieve the shame that persists, with those who bear the wounds and in our society.

I grieve the egregious perfidy that is the unfathomable backlog of rape kits across our country.  A problem so great that a television actor is devoting her personal time and public platform to fighting to get those kits process.  I grieve the lack of compassion, sense of urgency, and justice that backlog represents.

I grieve the children who do not understand what is happening to them is wrong.  I grieve the adults who've kept silent.  I grieve the parents who find their children having to bear the same wounds, experience the same horror.  I grieve the pain, the doubt, the dismissal, not being believed, the shame, the sorrow, the self-loathing, the self-destructive coping mechanisms, the illnesses, the broken relationships, the suicides.

Mary was right about the darkness.  And she listened as I talked about Las Vegas.

Because I also grieve for those in Las Vegas.  Not just the family and loved ones of those murdered and those wounded.  Not just the first responders.  Not just the survivors, of whom it would be a lie to say they walked away unscathed.  I grieve for an entire city who've learned that it could happen in their back yards.  I remember living with the DC sniper.  I remember the loss of a sense of safety just going out and about.  I remember the before and the after of the lesson.

But I also told her about this movie that I watched, "Hidden Figures."  I know my dad would have loved it.  I know he would have told me stories about his work in the space program.  Things I never knew about him until his funeral, but my sister remembers.  I know he would have watched it with me several times, the way we did with movies we liked in those last years with him.  I didn't realize how the movie deepened his absence in my life.

The burden of my own past being churned up in therapy.  The news of abuse so prevalent but rarely reaches mainstream media.  That movie.  The massacre.  Oh! How very many things to make me sad.

However, I think my bad day was another blasted hormone surge, because I awoke today without the crushing emotions smothering me.  I awoke with all those thoughts still churning in my head, but no sadness overwhelming me and driving me to the despair that feels as if death is its only escape.

It is like there is a damn within me, that occasionally still has its floodgates opened.  When they are that way, I am not aware that something is especially off, that I am in a place of insensibility and inconsolable in my grief or sadness or shame ... or all of the above.  It is only after those gates are closed and I find myself clear of the sudden onslaught of emotion that I realize what most likely took place.

I had a bad day yesterday.  It is probably the best bad day that I have had since the surges started.  It wasn't until I moved to Fort Wayne that I learned that my hormones were low and so ovulation and its surge would fell me emotionally.  That is why I take birth control now and why the plan is for me to continue taking hormones when I move through menopause.

For several years, those hormones made bad days a thing of the past.  Only when I changed brands because of manufacturer discontinuations did I find myself captive to the surge again.  But last February, I had a bad day that frightened me because I am taking my pills and had not missed any.  I learned, afterward, that even on the pills, I could have a surge.

That made me panic.
How am I supposed to get through bad days?

Yesterday was the third bad day since February.  They scare me because I think about how foggy-brained I can get now with dysautonomia and couple that with insensibility and things seem fairly hopeless about my getting through the bad days that lurk within my body.  It is another fear I face when I think about the future.

In the movie, Meg comes home and finds her sister Babe with her head in the oven.  She pulls her out and they talk.  At one point Meg asks Babe about what she's just done.

Meg:  Oh, Babe, why?  Why?
Babe:  Why what?
Meg:  Why did you put your head in the oven?
Babe:  Oh, I don't know, Meg.  I'm having a bad day.  A really bad day.

That line has stuck with me ever since I saw the movie, even though the pursuit of death is not something I battled until ... well ... until the night terrors that featured scenes from my past started ... the same time as I started to become ill.  It just resonated within me in a way I cannot describe.

Meg and Babe talk and Babe tells her sister that her husband was going to have her committed because he said she was insane.  There is this lovely, lovely moment where Meg tells Babe she's not insane at all even as she's pulling the rope Babe used to try to kill herself before then trying again using a knife and then trying with the oven.  You want to laugh and cry at the same time.

"Crimes of the Heart" is a story of a southern family full of secrets and scars and tragedies.  I think you might not really get it unless you live in the South.  I think you might not get it if your family is not full of secrets and scars and tragedies.  I think you might not get it if you've never despaired.  But I do.  I got it before I ever understood that I did.  I got it before I ever looked at the secrets I've kept ... if that makes sense.

Meg eventually tells Babe, "We've got to find a way to get through these really bad days."  That's what I want, if I am honest.  I want a way to get through bad days and a way to get through bad pain flares ... particularly pudendal neuralgia flares.

I want that, but I am not sure I even believe such is possible.
I had a bad day yesterday.

Monday, October 02, 2017

May we all listen...

In the coming days and months and probably longer, there will be many stories about what happened in Las Vegas.  I hope so.  I hope we hear the stories of the lives cut short and the lives spared because of the help of strangers. Listening at such times is ever so much more important than speaking.  Though I do acknowledge that writing here I am speaking.

To me, this story, is what serving your neighbor can look like: a stranger staying with the body of a man she only met as he died so that his loved ones would know where he would be taken. She cared for his body in death as they had cared for him in life. Sometimes loving your fellow man is sitting with him in death.

Another survivor answered his phone and got his name. She tracked down his mother on social media and found out his girlfriend. She called his girlfriend and made her promise to stay.

Call me weird, but I think one of the most loving acts this stranger did was to write the man's name on his arm. This way, when she was eventually separated from him, she ensured that the others who would tend to him in his journey to back to his family would always know who he was. Maybe it was spur-of-the-moment. Maybe it was strategic. In either case, it was loving.