Tuesday, March 21, 2017


Well, the appointment that next day (the 8th) was a crap appointment, the ripples from which are pretty devastating from a medical care standpoint ... not a physical one.  And today's was no picnic either (about half drown in one of those ripples) and I want, very much, to write about what has happened, but I have been wanting to write, too, about the baby in the jar.  And so I am.  Only, really, what I want to say is so very clear in my head, but keeps stumbling about on the page.

The world I grew up in and that in which my best friend grew are planets apart.  We are just far enough in age that there are some cultural stuff that is familiar to me and not to her.  Plus, well, Texas is just plain different from the rest of the other states.  But I mean our families.  And the families of my other dear friends.  I knew this, but I been realizing, for a while now, just how profound that is for me.  It is a chasm too vast for me to cross, I think.

Not that I need to do so in order to be or remain friends.
Not that they want me to.
I just need it to be okay to have such foreignness in me.

I gave an example of that foreignness ... wanting to write about the baby in the jar.  When I was a little girl, I played with the baby in the jar that was in my grandmother's bathroom cabinet.  She was a science teacher and saw nothing wrong with having the body of a human being in her bathroom cabinet.

For the most part, I only have flashes of fragments of not quite memories.  I am a stranger to my life and my lack of personal history oft makes me feel the alien.  A gift my sister has been giving me of late is telling me stories of growing up.  What I do remember in detail is what she doesn't know.  And what I wish with my whole being I could forget.  What she remembers I do not know.

Some of the fragments, the flashes, are just a breath of feeling.  When I was in the fourth grade, we moved across town. This was in Houston, before we relocated to Dallas, the city where I would call home.  We lived in a townhouse adjacent to a wood.  On the other side was the Goodyear blimp hanger.  The wood was filled with wild dogwood.  It was a magical, magical place.  If I close my eyes, I can almost ... almost remember it.  The flash is this snippet of looking up at the sky through the blossoms.  Oh, how I wish I could remember that place!

Back in those days, security was a different animal, so I often snuck up to watch the maintenance on the blimp ... even daring the hanger.  What a wild thought!  It was massive.  It was a marvel.  It was as otherworldly as the dark wood dappled with sunlight.

I rock my body in time with the one I hold in my hand as I shake the jar.  I can feel the cool glass. I can see the curve of the nose on the tiny body.  I can sense the emptiness of the tiled bathroom.  My musing.  My isolation.  My fear.

I grew up playing with a baby in the glass jar.  That was my normal, my frame of reference for building a world view.  Sometimes, I find it very, very, very difficult to wrap my heart and mind and soul around the forgiveness of Christ whilst standing in a world where playing with the body of a human being is normal.

How can He possibly forgive me?

Tuesday, March 07, 2017

More news...

The eye doctor I found at Walmart is just so lovely.  He wears a bow tie.  I think bow-tie-wearing men are inherently kind.

To back track, when I had my exam, he does several tests.  One of them did not go well, apparently, and he asked me to repeat it when I picked up my first set of glasses, though I did not know why.  At that first visit, he asked me to bring him a list of my doctors.  He TOTALLY should have had that by now and he TOTALLY should be on the list I maintain.  So, I said I would and then forgot.  After another reminder, I brought the list to him.

Last week, I got a message from my GP's nurse telling me that the testing was concerning and that I needed to see another specialist.  I replied saying that I was already seeing too many at the moment and my eyes would have to wait.  She wrote back saying that Dr. Walther believes this is a MUST DO.  Well, my response was a bit of an out-pouring of frustration, though politely written, saying that if it was a MUST DO then she needed to pick something to drop ... like the physical therapy.  I did not have a response to my upsettedness, but I didn't expect one.  Her nurse often just listens to me since her sister has dysautonomia and she understands my world.

Well, today, my eye doctor called me.  He was kind and patient with all my talking around his request, but he remained instant that I see a specialist.  IF his testing is accurate, he finally, reluctantly admitted, I have peripheral vision loss.  On me, that most like is MS related.  My heart sunk.  If I do and if that is the reason, then this is now two new MS symptoms in a few months.  It's been years without a flare.  I can NOT have an MS flare with everything else going on!!!!!

I was still hem hawing around agreeing to see who he wants me to see because 1) it is a different place than where my GP wants me to see and 2) MONEY.  But Dr. Embree is persistent!  He his kill shot to my resistance was saying that IF I have peripheral vision loss, there is a possibility I could end up with only a very small range of vision.  As in tunnel vision!

Okay, I'll go.  In 30 minutes, he had called and talked with the doctor at the clinic and had me scheduled for an appointment on the 20th.  I was impressed.  When I talk about him, I often receive back a sneer ... "oh, a Walmart doctor."  He is the BEST optometrist I have ever had.

As I have said, I've been medically melancholy since the whole discovery of my new normal means living with dysphagia.  Then the trigeminal neuralgia.  Then the pain flare.  Then the dry skin, mouth, throat, and eyes.  Then Sjogren's.  Then the concerning thyroid scan.  Then.  Then.  Then.  THIS!


So, I will just admit that I bought myself something else for my haven.  Nope, not a water fountain.  That I'd like to be homemade somehow.  But something for the garage wall that is one corner of my haven.  The spot where the water fountain will be.

[Ignore the cork packing squares.]

I found this on Craigslist and Firewood Man went and fetched it for me.  I LOVE it.  And it was really, really CHEAP for a stained glass window.  I am going to buy some glass and Firewood Man is going to make a wood holder for it (a frame).  We will screw it into the garage wall and then caulk around the frame for good measure.

The shameless part of me rationalized spending the $60 as yet another birthday present since my mother usually sends me a check.  Technically, I'm just floating her the money, right?  There are two small cracks, but WHO CARES?  I have a stained glass window for my haven that goes with my tulip bed!

It was a blessing to have Tim fetch this for me on the day I had more distressing news.

The other thing that came today was this.  When looking at more headache remedy (essential oil), I saw that there were diffuser necklaces.  They were $45 and yet I thought it might help me if I had a familiar scent wafting about me during my medical appointments.  I went looking on eBay, thinking I'd find one cheaper and voilá! there was this one for $1.49!  It is stainless steel, so can be sterilized for a hospital stay if need be.  I wanted one with a cross, but the two options were unappealing to me. I found one that looked like a Luther cross, but it was nearly $9.  I thought I should take the cheaper one, not knowing if it would work.

It does!
I've had gardenia wafting about me all evening.

I see my GP tomorrow.  She is a bloody fantastic doctor, but I just don't want to go. I don't want to hear anything else distressing.  But I do know that going is important and, maybe, it could be that today's news is all she has to address on the negative side.

I did learn the baclofen, the drug that could potentially help with the spasticity in my legs, has terrible side effects.  I still want to try it, but I want to talk about it with her directly, rather than what was relayed by her nurse.

And I do have those good words to use to talk about an asthma plan.
So maybe I do want to go.  Maybe.

Monday, March 06, 2017

Good words...

I wanted to write about the second physical therapy appointment, but I am just so tired!  And today was a long, long day for me.

The nurse from the community health program left.  This was the nurse who replace the nurse who took another position.  The social worker who has been checking in on me asked if she could bring the nurse coordinator as a stop-gap measure until a new community nurse is on-board.  It is hard for me to deal with new people, but I agreed.

Mostly, I talked to the social worker, not trying to ignore the coordinator, but because it was easier.  However, I will say that I was greatly blessed by her presence because she is a fantastic reflective listener and she is very, very, very good at giving someone alternative thoughts to think, coaching on better words to use in communicating, and in making plans.  She's a natural born counselor.  Still, what we talked about was a brutally draining as a counseling session.  I was so exhausted.

Firewood Man arrived before they left and waited for me in the back yard.  He came over to measure what we need for the pad beneath the trash cans (instead of replacing mine that I made from old bricks, he's bringing leftover paving stones from a project to use) and then he brought over a copy of the pattern I chose for the pavers to see which direction I wanted it to run.  Before Tim showed me the photo, I thought I did not have an opinion, but when I saw it I knew which way I'd want it to go.

Whilst he was here, he went ahead and measured for the raised bed he's going to make for the space across from the day lily bed.  I have gone back and forth on adding any raised beds, but I really would like to grow a bit more than I currently have space for in my current raised bed.  Mostly, I'd like to keep my herbs in one place and my vegetable attempts in another.

Since he was measuring, he went ahead and measured to repair the back sidewalk.  Once when splitting firewood, Tim broke one section of the sidewalk, but the steps are broken, as are five other sections.  We discussed him going ahead and doing so and my just pulling money from retirement and working on paying it back later.  It makes more sense when he has the helpers to do this kind of work to take advantage of them.  IF the thyroid scan remains constant, then I wouldn't have a larger outlay of medical stuff and could figure out a way to pay for the sidewalk by gouging my grocery funds for the rest of the year.  Eventually.  It makes sense.

And there is this thing ... I have been in a melancholy spiral of sorts with all the things happening to my body that I cannot control and how physically miserable I am at times.  But I can control ... or fix ... things that are wrong about the house.  I can stop looking at a broken sidewalk even if I am still broken!  And I can have my haven.

I think that Tim is already excited about how much I have savored the space at the back of my yard now that the alley view is blocked off.  I've eaten out there twice and last night I spent some time lying down on the crushed rock just enjoying the view.  His excitement over my excitement gave him another idea for the space: an outlet for a laptop!  What a GREAT idea.  The conduit would need to be buried beneath the pavers, so he can still get that done since only the crushed stone is down.  He's even going to run the conduit up the back side of the fence so all you'll see is an outlet on the far side of one of the posts.

Snow has cropped up in the forecast for Saturday, so Tim is trying to adjust the plan to working on the pavers on Friday, doing the leveling work Thursday evening.  Sweet of him, because that means taking a day off work.  Otherwise, if it doesn't work out then, we will have to wait another week or so.  I prefer sooner!

Answering all the questions he needed to ask about the size of the raised bed (six feet long and 26 inches deep) and the changes in the sidewalk (it is a non-standard size currently ... switching to 42 inches wide between the back steps and the garage, as well as removing the curves and making it an angled sidewalk since the doors are offset).  Sometimes, I just want someone else to think, to decide.  At least Tim teases me and lets me tease him back.  When we talk, sometimes, I am not ill.  I am just ... me.  That is simply wonderful!

Walking about the space, Tim pointed out that the bench really should be in the back corner.  The table can be up front where the bench is in the last photo, since that will eliminate any problems with the chair legs and the opening in the pavers around the tree.  With the fountain going by the garage wall corner, that would leave space for one of my folding lawn chairs beneath the tree by the fountain and still have space for a fire pit thingy in the front center if I want.  I, of course, wanted to swap the table and bench immediately, but that bench is HEAVY concrete and he's already moved it three times with the work he's done.  He'll have to move it to do the pavers, so I can see it in the corner then, right?

Basically, Tim created a PLAN for the space, an orientation for the bench and table and water fountain (not that I have one) so I'll know where everything fits.  I LOVE ME some plans!  He even started Googling homemade water fountains because I'd really like one made of found stuff.  Then he started texting me screen shots of ones he likes.  Funny.  Fun.  Sweet.  What a merciful God to send someone to help me as he has at such bargain rates!

I really, really, really hope the pavers can go in Friday.

The other PLAN for today?  The nurse coordinator is going to make arrangements for me to visit the emergency room at Parkview Randalia, the emergency room closest to me that is in-network.  She knows the head of the department and thinks that we could do a walk through of what an asthma attack care would be there.  That would be really, really, really, really helpful.

I fear so much going to the ER for asthma, as much as I wanted to be in one 9 days ago.  I am ... well, the social worker and the nurse coordinator gave more positive words to say ... more complicated than I was when I went to many ERs in Alexandria.  I didn't have PTSD then (or at least I wasn't triggered).  I didn't have dysautonomia and Sjogren's and a pacemaker and all the crazy/crappy medical things I've accumulated since then.  I didn't have anxiety.  I didn't melt down.  I am really fearful of being put in a situation where lots of people are touching me and I'm in distress and yet still have to battle all the other stuff.

Parkview practices patient-centered care.  The community health program is trying to knit together a care program tailored to me that is promulgated across its medical care centers and that includes what will make me feel less anxious and safer.  They showed me a page from my electronic chart.  Emblazoned across the top in RED and BOLD are instructions to have only female personnel where possible.  That embarrasses me and defeats me and comforts me.  I know ... complicated.  I felt greater comfort that if the cardiologist creates an asthma treatment plant, then it will be in the chart where anyone can pull it up, even at the emergency clinics that are scattered around Fort Wayne.

The other thing the nurse coordinator suggested is that I ask for help considering if my asthma is getting worse again, as I think it is or if this is another new normal, if I simply cannot do things I used to, like carry out the recycling bin because my body has changed, not so much my lungs.  She wondered if maybe I need to carry out the recycling in smaller amounts.  Or perhaps using my emergency inhaler before I do something that will trigger my asthma.

I have felt like no one has heard my concerns about my asthma because it hasn't been bad yet here and I have been using my emergency meds at home.  I didn't have it as a child and only got it after moving to Virginia.  As long as I have had asthma, no one has ever really taken the time to teach me about it.  I did have a sort of a plan in Alexandria (do not nebulize more than twice in a day without going to the ER), but I don't have one here.  And I need one since the meds I'll get in an ER will spike my BP and heart rate but I need for those reactions to be either allowed or treated as reactions and not a systemic problem.  And, of course, I have that pesky pacemaker.

I have better words now, to try once more to be heard about this.  My GP has not really heard me and the two visits to the immunologist and asthma specialist did not hear me.  I have better words that are devoid of emotion and the past, focusing on moving forward.  Good words.

I'm grateful.

Sunday, March 05, 2017

Catching up...

Another week and a bit lost.  SIGH.

Recovering from the asthma attack, as well as the blues of the asthma attack, took a lot out of me.  But most of the last week has been trying to manage my upsettedness over Amos being put to sleep for his teeth cleaning.  On the day (Thursday), it took me 38 minutes to actually let go of him.  [My vet has very, very patient staff.]  I had brought his weighted blanket, one of his babies, and a t-shirt that I slept in, so when they put Amos in his cage, he immediately laid atop the t-shirt and tucked his baby beneath this chin.  But later, when they went to actually sedate him, Amos wigged out.  They managed to give him the first shot, but Amos was so agitated that it was not working.  He pooped and peed all over himself and the cage.  I was expecting him to be ready for me at 11:30, but when I called around 10:00, I learned of his distress and headed back to the vet.

Long story short, Amos got his teeth cleaned and they let me have him as soon as he could stand on four legs (not walk, mind you, but at least stand).  Oh, how I needed to have my beloved Fluffernutter  in my arms again!  Amos was rather hilarious, not really understanding where he was or what he was doing, but he recognized me because his tail set to wagging.  The vet staff have never seen him that happy.  It was a good moment.

I admit that I was worried even on Friday, because Amos was just so sleepy.  He was a little interested in food and water, but he was not much interested in anything else.  I mean, when Amos doesn't Defend The Homestead against the invaders on the sidewalk out front, I know there is something wrong.  Saturday, though, Amos was more of his perky self.  And by Sunday, I knew he was okay.

The upshot of having his teeth cleaned is that, over the past couple of months, I started noticing that his kisses were STINKY.  He was actually diagnosed with halitosis!  I learned that when dog's teeth get really dirty, bacteria builds up on them and that is what smells.  So, Amos' breath no longer stinks!  YAY!

The vet doesn't want me to wait another six years, but she thought that he might be okay for three, especially if I go back to brushing his teeth.  I think I shall try that.  After all, Amos is beginning to forget who's Alpha Dog around here.

I was distracted from his continuing somnolence a bit because the bistro set I ordered for my haven arrived a week early!  That meant I had to put the table and chairs together.  [I sure do loathe Allen wrenches.]  Normally, Amos would be prowling about, expressing his upsettedness.  But this time I was left to work in peace whilst he napped.  Don't you think it looks good?

Today, Firewood Man fetched the pavers (and other supplies) because they went on sale.  I thought I was going to have to wait for another month!  If all goes well, he will be installing them this Saturday.  He would like for me to not go outside and keep them company whilst they are working, so that I could come out and be surprised by the end result.  He's planning on bringing a strip of the edging over some evening this week so that I can see what the real shape will be.  And then we will also map out the space around the tree.  Even as I typed that I realized the table would have to be moved, or at least the chair next to the tree, since the chair legs, as they are now, would be in the hole.

Of course, I am not sure about where the table should be or the bench.  I've thought about having the bench in the back corner.  And I've thought about having the bench tucked to the right of the tree over where the fountain  (I hope) will be.  Mostly, I think I won't know until I see the final shape of the patio (is that what you call the flooring outside??).

I also have ideas about some planters in my haven, but I do not know yet if I want Tim to build them or to buy some tall pots.   I think I will know more of what I want to have in that space once the space is more defined.  I know I want water and a wind chime and some growing things.  I don't know if I want a hanging basket or three or pots or planters.  I don't want to rush.  But I knew that, for the table, I wanted chairs with arms.  That severely limited my choices in the lower budget range.  However, I am fine with my selection and have already picked up a glass table top for it to make cleaning it easier.  I had dinner out there today!  Soooooooooooo peaceful!

Saturday cannot come soon enough!!