Saturday, February 25, 2017


Early this morning, I awoke abruptly coughing and gasping and struggling to breathe.  It is a terrifying way to awake.  I had forgotten that.

I miss the theophylline.  I mean, it clearly was starting to cause more problems than it helped, but I miss it.  I miss the control it gave me over my asthma.

In the intervening years, emergency inhalers have changed.  At least, for me they have.  The best news was that the combination of drugs that I use in my nebulizer are now available in an emergency inhaler.  The best news about that is that I qualify for patient assistance program on that inhaler.  Having used it muchly, I adore it.  Quite effective.

Except when you awake in the early morning coughing, gasping, and struggling to breathe.

I slept until around 3:00 in the afternoon, once my breathing finally got better, my heart rate dropped, and my blood pressure came back down.  My response to the asthma drugs was blunted, somewhat, by using the extra half-dose of metoprolol, but I couldn't wait before taking it and using my nebulizer.  The attack was the worst one since moving here.  The kind that I used to drive myself on over to the ER to address.

The Parkview ER is a half hour away (at least I don't think there is a closer one).  I am fairly certain I could go to an out-of-network ER in an emergency, but I wouldn't much like that kind of paperwork/insurance battle.  Plus, when I have asthma meds, my heart rate and blood blood pressure swing wildly and it's important medical personnel have some understanding of dysautonomia before plying me with heart and BP drugs.

Then there is the whole shame angle.  Back in Alexandria, I had a system.  I wore these stretchy undershirt things that could stay on in x-ray.  Now, my abdomen is too sore to wear them.  Maybe if I found larger ones, but I am not sure.  Then there is the pacemaker thing.  Before, I was rarely placed on a monitor.  Now, it seems like everyone wants me on a monitor.  And it's pretty much impossible to keep yourself covered up when you have folk sticking pads on your chest and abdomen and even legs.

But I almost went this morning.
I suppose I should investigate where to go.
Instead I nebulized at home today.
Several times.

In between neublizing, I found myself drowning in the need to DO SOMETHING.  So, I did, though most of my doing was around food.  I:
  • cut Amos' nails
  • took my beloved Fluffernutter for a walk
  • made bacon-wrapped fillet mignon with boursin cheese
  • poached chicken with lemon, garlic, and thyme for salads and such
  • cooked up some crumbled bacon bits for my salads
  • made a Betty Crocker batch of molasses cookies (sadly, I don't like them ... what is wrong with me???????)
  • built myself a fire
  • and finished the day with some of those luscious scrambled eggs with spinach, sun-dried tomatoes, and goat's milk cheese. 

I'm tuckered out ... breathing better, but tuckered out.

Friday, February 24, 2017

Catching up...

I've been trying to recover from all the appointments and going out over the past two weeks, so today was a lot of resting.  Not all resting ... but much resting.

I thought I would start that resting last night, but I got a call from the Walmart Vision Center, so I went to fetch my new glasses ... my new, new glasses since my new glasses did not work out.

I really am not much for selfies when it comes to me, but I do like that you can see that my hair cut works well after sleeping on wet hair and rolling out of bed without any sort of combing or brushing or anything like that.  The glasses are not as great a look as the first ones, but they fit well, having the much needed nose pads.

These are my new, new sunglasses.  I was going for an old, sort of classic look.  They are gold on the frames and leopard print on the sides.

The case is for my glasses.  It is pink.  I am not a pink person.

As you can see from my sweaty face, I took Amos for his walk today.  That was all I thought that I would be doing, but I decided to stop putting off tending to a free begonia that my neighbor shared with me (she got three).

The pot was another freebie.  Sadly, it had the bay leaf plant in it that I bought last fall (summer??).  It died.  I had been ignoring the dead plant in the solarium and the new plant sitting on the dining table, so it was time to swap pots and water.  I just adore the blooms on this begonia!

Firewood Man came by on Wednesday to trim the fence posts and install the caps.  Amos has been spending lots of time back there in my haven, mostly up on the bench!  Silly Fluffernutter!!

Firewood Man also put in the river rock on the back side.  I need to take a photo of it, but he put it there to hold the paving base in place. I think it looks smart and sort of finishes the back side of the fencing in the alley.  I just so love what a fantastic job that Tim's done for me ... one that is better even than I imagined.

I did get the Menard's rebates off in the mail.  I'll get ~$70 back to use on the pavers, when they go on sale.  I think that I want the tumbled pavers and I think I want the 4 Block Step pattern.  I am just not sure.  I sort of wish someone else would make the paving decisions for me.

The rest of the day, I did a lot of just sitting and trying not to focus on my eyes and my abdomen and the nausea and the headaches and the falling and the fainting and Georgie's shenanigans going on in my heart.

With my eyes, I often have to take a break from using them.  But, more importantly, I have to somehow learn to remember that when they are hurting it is because they are dry and I need to moisten them.  I am not all that good at remembering that yet, but the gel and the gel drops and the Balance drops are helping.  At least I have not gotten back to that place where I was so scared that the dryness was going to damage my eyes instead of merely making me miserable.

Amos has been just fine with my resting.  He'd rather I rest all the time if it means that I stay home with him.  He doesn't know that the Great Separation of 2017 is upcoming.  March 2nd, he's having his teeth cleaned (I've been saving for 14 months), which means anesthesia which means Amos will be in the clinic all day which means we were not be together all day.  SIGH.

Who do you think will take it the worst?????

Tuesday, February 21, 2017


It happened today!

I missed the photo of Firewood Man digging out a foot of dirt to create a base for the paving stones.  Now, if it were me, I would have maybe taken it down a bit, tossed down some sand, and stuck the bricks on top.  Firewood Man is all about doing things correctly.  So, after digging out out all dirt, Firewood Man then laid down 4.5 tons of crushed rock as a base.

Spreading and tamping and spreading and tamping and spreading and tamping happened until after dark, so I had to take a photo with flash.  Even though it is a bit fuzzy and dark, is this not a lovely sight?

He left a pile of crushed rock on the right side in case we needed a bit more to level a spot here or there.  And then he installed the final panel.  I about near wept.  I really like that we extended out the fence on the right to make a proper corner instead of the angled corner that was there.  Otherwise, that post right behind the tree would have been the back corner.  And I think that having that corner makes the tree look more like it is in a space than just ... there.

Before he left, Firewood Man moved the bench back so I could enjoy the space.  I have 1,001 ideas of how I might make it my little haven.  Right now, I am leaning toward eventually having a fountain on the right hand side against the garage.  Then, I would have the bench across from that.  And beneath the tree a small table with chairs.  To eat out there ... or blog.

[I currently have not a single clue how I might fund a fountain and a small table with chairs aside from stealing from my grocery and household budget funds.  I'd call them "medical expenses" for mental health, but that line item is vastly underfunded as it is.]

I am not sure which kind of pavers I should get or even the pattern style.  I like the idea of cheap pavers and I like the idea of a pattern to how they are laid, but beyond that, I think I mostly would like some that look old rather than straight edge bricks.  Mostly, though, it is all about how cheaply I can do this, especially since I will have more Menard's money to use on them.

Firewood Man is willing to build some planters, if need be. He plans to move the downspout on the right to the other side of the fence.  Another change in plans because of how it turned out.  I have no problem with moving the downspout!

We were both concerned Amos might try to get out beneath the panels since there is extra space there right now until the stones get put down, but Amos showed only a passing interest to the space.  I am sooooooooo happy I no longer need to have Amos on a leash in the back yard, for he was not so much interested in tending to his major business on a leash.  When he cannot go outdoors, Amos has no compunction about going indoors.  SIGH.

Today was a long day because I had my cardiology appointment.  I think the main point of the visit was that he has been surprised and concerned by just how much the pacemaker (Georgie) is pacing me, well over 90%.  He would like for my heart to work on its own and has not really experienced persistent bradycardia amongst his other dysautonomia patients.  He actually turned the bottom setting of the pacemaker down from 60 beats per minute (BPM) to 50.

I actually brought up the subject because I think I am feeling the base pacing when I roll over on my right side at night.  Sleeping on my left hurts because of the pacemaker pocket ... still ... so I would like to sleep on my right side.  But when I roll over, I feel this funny quivering inside.  My thought was that if we turned it down a bit, maybe my heart would beat on its own and I wouldn't feel it.  I mean, bradycardia as a response is different than persistent bradycardia.  So, my hope was/is that a setting change might help.

He agreed, though not hopeful about my theory.  However, sitting on the sofa this evening, when checking, I have not see my heart rate below 56.  That means, when checking, my heart has been working on its own all that time!  Woo Hoo!  Sleeping, though, would be longer odds.  My heart rate and BP drop quite a bit when sleeping.

He asked how he could help me, given all that is going on (I LOVE that he read up on my chart before I saw him, going through the notes of all my specialists).  I mentioned that Georgie still doesn't really pace when I am on stairs or other times of physicality where I wish she would.  It is hard to be physical when your heart is beating so slowly.

With pacemakers like mine, there are two options:  1) use a setting based on motion or 2) use a setting based on how hard your heart is working.  The latter is more important for fainting because it kicks in when your BP is plummeting.  It also, be it for good or ill, kicked in other times your heart is working hard ... like when you are emotional.  Yes, well.  Georgie often lets me know I am upset before I realize I am upset because she starts firing.  Your heart also works hard when you are excited, like the last two minutes of a Dallas Cowboys game or the end of a NASCAR race.  Yep, Georgie also goes nuts when I am watching football and racing.

The motion setting would help with the physicality, but the other setting (CLS) is safer for patients with dysautonomia.  What he decided to do is increase the sensitivity of the CLS and increase the jumpstart BPM from 110 to 120.  So, that means I can potentially have my heart driven from 50 BPM to 120 BMP in just a few seconds!

I am to live with the changes for a week and then report back.

We also talked about the fact that the metoprolol is blunting my reactive responses to my emergency inhaler, but more with my heart rate than my BP.  My last attack was 156/71 HR111.  Having a heart rate of just 111 at such a time is great, since I use to leap up closer to 200.  However, when my body is stressed, my systolic tends to jump, but the diastolic lags behind.  When the difference between those (pulse pressure) widens, I feel this sense of doom and I feel like crap.  BUT the cardiologist has a plan!

I LOVE ME a plan!

He said to take half a pill of the metoprolol and then wait 5 minutes before using my emergency inhaler.  Since I start coughing before wheezing, most of the time, I have the time to wait.  That will boost the blunting effect.  I am almost sort of maybe looking forward to my next asthma attack.

We talked about a walker (he brought it up), thinking that if I had greater stability and safety whilst walking Amos then I might could take a break mid-way and be less miserable whilst walking.  He's all for me walking, although he understands why I cannot do that for very long.

We talked about this fearful thing that happens:  When my heart is really working crazy hard, I feel my pulse in my lower back and it HURTS.  As my heart slows, the pulsing in my lower back slows until it goes away.  No more pain.  Just like that.  I have worried that I have an aneurysm or something.  But he has a much more likely answer:  it is a sympathetic response (our autonomic nervous system is divided into the sympathetic and parasympathetic).  Or, to put it another way, "it's your dysautonomia."  So, I have mixed signals causing the muscles in my back to contract as my heart is contracting.  Fun times, eh?  I am thankful to better understand this thing that happens to me. And to see him so very unworried about it.

Seeing him worried about how much Georgie is working for my heart is a tad disconcerting.  I'm not sure what to do with that.  SIGH.

He also explained that when my BP plummets and the blood begins pooling in my legs and it feels like my neck is being squeezed, that's my body going into preservation mode since one of the most fascinating designs of our Creator is that our body will automatically seek to protect the blood flow to our brains.  In a way, it actually is being squeezed, just from the inside.

That, I think, is one of the worst aspect of dysautnomia.  You feel so very many processes of your body that normally go unnoticed.

And we talked about the cost of having a quarterly review of the reports Georgie takes and then sends to his office via the home monitor (which I nicknamed HAL).  I would like to skip the reviews to save money.  He totally and completely understands.  Since HAL will notify him if I have abnormal heart activity (aside from the arythmias I get that are par for the course for dysautonomia) or if one of my leads breaks, he is fine with skipping the quarterly review.  Of course, I still have to come in once a year for the dreaded interrogatory because hooking me up to the computer in the pacemaker lab will generate more extensive test reports than what Georgie is capable of doing.  It is really, really, really great  when your doctor understands the need to keep expenses down.

Anyway, that was my today.  A today filled with compassionate and careful medical care by my cardiologist and compassionate and careful construction by Firewood Man.

Monday, February 20, 2017

Maybe tomorrow...

Tonight I went to an abuse support group.  I am of many minds about it.  I'd give just about anything (save for haven panel fencing to obscure garbage bins) to have access to counseling.  Only I am not really convinced this is the way to go.  It is, essentially a 12-Step program for recovery from abuse, complete with a recitation of the serenity prayer.  It does mention Jesus and not some whatever-is-your-higher-power god, but I don't think recovery from abuse is that simple.   Work the program and you'll get better.

I am disappointed and I am confused.

There are thoughts in my head that I wish I could have help with regard to the sexual abuse, but a large part of what I struggle with has as much to do with being chronically ill as it has to do with that because it has to do with my body.  I mean, some of it is patterns of thought, but some is patterns of physical response that are simply not going to change, such as the infinitesimally small amount of stress or shock or ... startle-ment ... it takes to trigger the fight/flight/freeze response in my body.   The regular, repeated, long-term pattern of dumping cortisol, adrenaline, and norepinephrine have wreaked havoc on my body.

I have gotten much better at managing my body after what I call The Dump.  When that hot flush that spreads out from my chest and sets me to shaking begins, I have learned to focus less on the outer picture and more on the inner.  To work on not despairing over what is happening and simply be in that moment, to try and minimize it.

In a way, it is like the work I have done on my migraines.  Minimize the aftereffects to try and avoid bounce back migraines.  I cannot stop the migraines.  I also cannot stop (well, at least not right now) the fear that overwhelms me with the pain, but even to that I do work:  I repeat over and over, like a litany, two hours.  That's all I have to get through ... two hours until I can take the second dose.

Of course, now, I to deal with the aftereffects of taking the migraine medicine.  It both saves me and fells me.  So, I have this whole approach for dealing with the aftereffects of sumatriptan whilst I am also dealing with the aftereffects of having a migraine.  And, what I am not doing ... what I don't have ... is a way of dealing with the guilt and shame of failing to be a good suffering saint praising and trusting God whilst I am in the midst of all that pain and bodily suffering.

It's exhausting.

I am not sure how to put into words what it is that I know that I need.  I mean, I want to talk about the things that are still secrets in my head and the things society keeps telling me are inappropriate topics.  But I don't want to be working my way down a prescribed road to recovery delineated by completing twelve steps.

I want to talk about my past and the pesky problem of knowing my thoughts are lies and yet still find myself bound by them.
I want to talk about shame and how that affects/interferes with my medical care.
I want to talk about suffering.  Then.  Now.
I want to talk about what I didn't learn as a child and what I still desire even though I am no longer a child.
I want to talk about my father's death.
I want to be seen.  To be heard.

To bolster myself, I wore my GREEN skirt, which I save for special occasions.  When I came home, I sat down to eat a bit and promptly stained it.  Today was disappointing on many fronts.  But tomorrow?  Tomorrow I might have completed fencing and a gravel base for the area to be eventually  covered with paving stones.  Tomorrow, I might have my haven!!

[Gosh, it's hard not to be excited.]

Sunday, February 19, 2017


I woke up to a bit of progress yesterday:

The fence had been removed.  The bush had been removed.  And the massive stump had been removed.  That was it for yesterday, though.  More time to swim in the waters of anticipation!

Today, there was more progress:

The posts started going in, which is actually very exciting to me.

Then the panels started going up!  I am LOVING how the back corner, rife with the site of garbage/recycling bins, is changing!!

When Firewood Man and his friend turned the corner, I got a little misty eyed!  Just darned lovely!  However, do you see that post behind the tree?  That was the back corner of the fence.  From there it angled back toward my garage.  Only the there there is over just a bit to the left since Firewood Man decided to pull the back line of the fencing in from the alley about two feet so as to protect it from any wild traffic or snowplows.  Neither of us realized it would shift left.  We thought it would shift right.  Looking at it, I thought it might be better to push the fence out to the right by creating another, slightly skinnier panel.

This change would make the right corner of the fencing into a right angle, back to the house.  It means that I will need to take a bit more care with pulling into my garage.  It means the brick pad I made for my garbage and recycling bins needed to be dug up and moved.  And it means we need another post and more materials for the additional panel.  So, my little haven is not quite finished.

It was dark when they called a halt, having dug the remaining holes and gotten all but one post set.  Here you can see the edge of the chain link fence was re-set, using a new post and clips, and the tension rod and cap from what was removed.  I think it looks just great.  Clean.  The variegated maple tree that I had to move out of the full sun location will sort of anchor this edge of the haven.

My neighbor has a gate, which can be seen in the first photo.  It is just a gate, not proper fencing.  So, the gap between it and my fence was just some chain link attached to my fencing with ties.  I had every right to ask that she remove that and put it in with a post, but I just lived with this u-shape of extra link on the fencing.  I mean, I inherited the situation.

I did ask her to remove it because my fencing was coming down.  She did not.  So, Firewood Man had to do that.  Then, thinking about how difficult things can be with my neighbor at times, I asked him to use one of my old posts and two of my old tension rods and more of the new clamps that I paid for to create proper fencing for my neighbor in the 18 inches or so between her gate and my fence.

When my neighbor saw the new/old fence repair Firewood Man did, she was not all that happy.  I will admit that I just hate this whole idea of changing something on my property (the fence is inset approximately six inches on my property) being ... I don't know ... so affected by my neighbor.

I really, really, really want a privacy fence all around.  My other neighbor actually has a gate attached directly to my fence.  No pole.  Just jury-rigged to my chainlink.  Plus, that neighbor regularly leaves her dog outside.  So, switching to the privacy fencing all around the yard means dealing with someone who's been actively aggressive (very, very, very angry about her divorce) and telling her that that side of the yard would be without fencing for two to three days ... no containment for her dog.

Fencing might make good neighbors, but it can also cause lots of upsettedness.  The first neighbor, flat out doesn't want me to have the privacy fencing.  She wants to be able to see into the yard.  I want to be able to go outside unseen and be outside in just my back yard, not the whole neighborhood.

Today, whilst Tim was working, I broached the topic of eventually, as is sometime much, much, much later in the future, converting the rest of the fencing to standard size (8 feet) panels of what he created.  That means he would have to make them ... I think something like 20 of them.  He said that the worst part would be getting me to agree to how much pruning all the things I have planted along the fencing would need.  He's right.  That would be a tad painful on my part.  But it was great to hear that this lovely, lovely look for my yard could be expanded.  And I think it would be just fine to have keep the back corner in smaller segments since there will be pavers there.

The funny thing was that Tim would like the fencing as much as I would because that means he would get to make my gates as wide as he wants them so his larger mower could fit through them!  I wouldn't mind that, even though the change would affect my raised bed a bit.  Actually, the fencing would affect that.  It would have to be narrowed, width-wise to accommodate the fencing.  I could also live with that.  Dreams to dream, eh?

In any case, in a few days, I shall have a lovely spot for resting in the corner of my yard.  And, in a few weeks (or months), when the pavers go on sale, it will be even more lovely.

I should finish by admitting that both Firewood Man and I were tickled that someone already stopped by to say how  lovely his fencing looks.  He's pretty excited that he figured out how to turn what I was thinking of into a reality.  I'm pretty excited that he did, too!

Saturday, February 18, 2017

Plans change...

Plans did not go as thought today, but I am not upset over that.  I know that Firewood Man does what he can when he can.  And, eventually, I'll have my garbage-bin-less haven.

Here is the first of five panels that Tim built at his house to save time here.  He will build the last two onsite because we are not sure of the total length on that side.  I think that the panel turned out spectacular and I am very, very, very much looking forward to seeing the new fencing installed.

Part of the reason for working this weekend is that we are having rather unseasonable weather.  So, not being needed as a cheerleader in the back yard, I instead spent time with Amos up on the airing porch.  We actually both napped for a while.  I did learn that his puppy theanine was not sufficient to keep him protesting the existence of all life since he had such a strategic view.  I wish I knew how to better work with his upsettedness.  However, even with his periodic barking, it was a truly peaceful time for the two of his.  Plus, I spent much of my awake time chuckling at how the stiff breeze made Amos look like the Flying Nun!

I sure do love my Fluffernutter.

This is my eye arsenal at the moment.  The two on the right are the gel products, with the straight gel in the tube.  I find it interesting that the gel drops seem to coat more ... or at least they block my vision for quite a while.  However, the gel turns into teeny tiny globules that float across the surface of my eye.  Or at least that is what it seems like is happening, for I see these tiny bubbles moving across the surface of my eyes when I concentrate on them.  Both of them help with the pain of the dry eyes.  I have noticed that if I am vigilant, then it is better.  But I am having trouble getting used to the rhythm of regularly dosing my eyeballs.

I am doing the gel morning and night, the gel drops mid-day, the plain drops on either side of that, and the Balance drops sandwiching those.  Basically, I'm trying to vary what I'm using.  In part, because of cost.  In part, because I wonder if, like many things in medicine, starting from the least intervention needed and working upward.  Plus, the ophthalmologist did say that this will be a bit of a trial and error process as I learn what works best for me.  I just wish I didn't have to learn so quickly.

When my budget cycles, I would like to get a second bottle of the Systane  Balance to have in my purse for when I am out.  In some ways, I could see this being like my Zofran (for nausea).  I have a stash by my bed, by the sofas, in the kitchen, in the master bathroom, in the half bath, and in my purse.  Only it is different with pills.  I can divide the bottle up rather easily.  I cannot divide a bottle of drops.

I did decide to put the Plain Jane drops by the toilet in the half bath, so that when I'm in there tending to my needs during the day, if I haven't dosed myself recently, I could do so then.  Maybe one next to the toilet upstairs, too.  Keep the Systane Balance, the gel, and the gel drops in my basket that I take up and down stairs since it has lots of my medical stuff in it.  I don't really care for the Refresh sample I got from the ophthalmologist, but there is a Systane equivalent (Ultra) that I can try.  I am also doing the hot compresses at night when I fetch fresh ice packs because they make my eyes feel so much better in the short run.

If only I could live with a hot compress across my eyes and ice packs on the pesky nerves in my head 24/7.  SIGH.

Hopefully, this is the last day my back corner will look like this.  Frankly, I think it will take more than a day, but Tim is determined.  In any case, eventually, sitting on that bench, I will no longer see garbage/recycling bins.  BLISS.

Friday, February 17, 2017


This has been a long week for me.  Of course, it is the week with that day in it.  Having never been loved, each Valentine's Day that rolls around, I think I died just a little bit more, deep inside.  Myrtle, the unloveable.

Tonight, after a very long week with a very long day today, I was on the phone helping someone with his website development.  For this small moment in my rather exhausted life, I was DOING SOMETHING that was productive and helpful and a bit fun for me.  Although, to be fair, because I was so exhausted, I told him straight up the things that I observed that needed consideration.  He's done an extraordinary job, but there is room for improvement before he goes live.  I just didn't have room in my remaining energy to tell him the 1,001 ways in which he has created a really great website before telling him the areas that were not so great.  Thankfully, he didn't need me to build him up before getting down to business, before getting down to the way in which I could help him.  That should have made the end of my very long day of a very long week good but it did not.

Instead,  I lost it whilst on the phone with him.

You see, Amos was doing his whimpergrowl to go tend to his needs and so I unhooked the phone and the computer and took both outside with us so that I could continue to DO SOMETHING whilst awaiting Amos to conquer his fear long enough to do something.  But when I looked to the back corner of the yard where he started to race whilst barking, I could see two very, very, very large dogs. Because my vision is so poor with these glasses (hopefully the second new pair will come soon), I could not tell if the dogs were in my yard or not.  I tossed the computer on the small table on the back porch and started screaming at Amos to come back to me.

Amos was more interested in protesting the existence of the dogs.
I was too afraid to even get close enough to Amos to grab him and bring him to safety.
Amos barked.
I screamed.
All in all, it was a bad moment.

Then, I heard some guy start yelling at me to calm down.  It appears he thought it was great for his dogs to hang out at my back gate.  HUMONGOUS dogs NOT ON THEIR LEASHES IN VIOLATION OF COUNTY AND CITY LAW.  I pointed out that they needed to be on leashes and his talk to me turned from scorn to cruel speech.  I was shaking and trying to herd Amos back inside where he would be safe.  [Three times I have found big dogs in my back yard who jumped my fence to be there.]

Okay, let's be honest, where I would be safe.

Oh, how I hate the fear that consumes me when it comes to big dogs, especially those not on leashes,  near me and my dog.  I hate the adrenaline and norepinephrine and cortisol racing through my body.  I hate the violent tremors.  I hate the raw throat from screaming.  I hate the need to go stuff myself in the back of my closet in order to calm down.  SIGH.

In Alexandria, Kashi was bitten twice through my fence.  Whilst walking, I was bitten (albeit not badly) three times by dogs that were "friendly."  Don't tell me that your dog is friendly.  Having a friendly dog does not mean that you can ignore leash laws.  Friendly dogs still bite.  And, even if they do not bite, I have every right NOT to have your "friendly" dog race over to me and jump all over me because I've picked up my dog to keep him from interacting with yours.  IT'S THE BLOODY LAW!

I went over a year without cutting as a coping mechanism for being overwhelmed to such a degree that it was cut or worse.  Cutting works.  It is effective in bringing clarity in a storm.  I get that it is an unhealthy coping mechanism and I very much dislike the careful scars on my body.  I thought I had finally moved on.  But I just don't have that Big Gun.

Words written about me online overwhelmed and felled me.  I cut.
A scene that has me right back there.  I cut.
Big dogs barking and pawing at my back gate.  I cut.

I am trying to hold onto the positive of this day:  I learned I am using my cane on the wrong side.  I am using it correctly, putting it forward when I take a step.  But by using it on right side, my dominant side, I am putting all the pressure of walking on my right side (and on my rather painful right SI Joint and right hip), instead of allowing the cane to help spread the strain of walking equally across my pelvis.

In my book, that info alone was worth the $40 of the Physical Therapy session.  As to how else it might help me, the jury is still out.

I think I also need a more stable cane, especially if I have to figure out how to use it on my left side.  That or I need an alternative assistive device altogether.  [I dream of a walker most days.]  I think that,  if I get a cane with a quad base (four legs), I might be able to learn to walk with the cane on my left side, using my weaker and less coordination arm.  I am, after all, the least coordinated person on the planet.

I am trying to hold onto learning something helpful regarding the misery in my body.
I am trying not to think of big dogs.
I am trying not to think of failure.

Thursday, February 16, 2017

Still more...

When speaking of vigilance, I forgot to mention that I have to be vigilant about the dryness in my mouth.  If not, I can lose my teeth.  Teeth.  Vision.  Fingers and toes.  SIGH.

I realized, too, that I forgot another area where I need to be vigilant: my PTSD.

I streamed something the other day that has triggered me.  I am not sure why.  I cannot remember what it is that has me triggered.  I mean, I remember what I saw, but I do not know why it has brought me back to the place where I am trembling in my soul.

Shut up.  Be still.  Wait until it is over.

If my mind turns to what I saw on television, I am right back there.   I am terrified.  I am cold.  I am no one.  Being there is not good for anyone, but especially not for me. 

I have not been vigilant about taking care of my mind, of late.  Or at least taking care of the part of my mind that is ... bound ... by my past.  There are things that I have learned about myself, but there is still much, much more that I do not understand.  And I wish that I did.  I wish that that part of me could be better. 

Walking Amos, I live with constant pain.  Every step hurts.  My beloved Fluffernutter has embraced walking so wholeheartedly that a mere glance of mind toward the deacon's bench where my walking pants are or if I pull a plastic baggie from the drawer in the kitchen (he knows what size I use to pick up his poop) or if I grab the bluetooth earbuds to listen to music, then Amos races toward the front door where he has a conniption fit in his excitement, sometimes knocking himself over as his joy spills over.  And so I walk.

We both live with constant fear, but Amos' fear has grow less, at least whilst walking.  He is a trembling leaf in the back yard still, but out on the leash, Amos can now bear to have others walk by him.  He can bear for cars to drive by.  He can bear for leaves to fall.  Amos' startle response is so much less whilst walking.  And so I walk.

But me?  I walk in constant fear.  Each time we encounter another dog, adrenaline rushes through my body as fear strikes.   It doesn't even have to be a large dog, but the large ones are difficult to bear.  Occasionally, I see a pit bull, and even on a leash, the sight causes me struggle to breathe as my panic reaches terrifying heights.  I hate the pain and I hate the fear, but I love my puppy dog.  And so I walk.

[Of course, I try to get Becky to walk with me (via Sprint) every chance I get because I want don't want to be alone with those things.  So, walking doesn't make me brave.]

Working on the pit bull attack and its impact on my life by walking Amos these past 102 days has helped with the PTSD.  My exposure therapy in a way.  But I have no way to help myself with the sexual abuse.  And so I have not been vigilant in trying to at least protect myself from things that trigger me when I am streaming to escape my bodily misery.

That has left me trapped.
Shut up.  Be still.  Wait until it is over.

Tonight, though, Firewood Man called because our plan for my trashcan-view-less haven in the back yard hit a snag.  Actually, they came to a crashing halt.  He ended up talking with me whilst he visited three stores trying to resolve the problem, then sitting in his truck whilst searching the Internet for a solution.  Menard's, Lowe's, and Home Depot all didn't have lattice in the size wanted.  The choice was either too large or too small.

Four hours later, we worked out a new plan.  Perhaps, it might even be a better plan.  That's how merciful Tim is.  He's patient with me and willing to work miracles to make an idea come to pass.  And, today, he helped me forget for a few hours that I've become trapped again.

Wednesday, February 15, 2017


Vigilance needs to be my new middle name.  But vigilance is exhausting.

I spent 12 hours swapping out hot, wet compresses on my eyes because they were so dry I couldn't bear the pain.  It felt as if the back of my eyelids were made of sandpaper.  I had used the new drops from the ophthalmologist, but I don't think they were better than the Systane Balance.  I put in drops each time I swapped out the compresses, but it was 12 hours before I felt as if I could bear my eyeballs once more.  SIGH.

I keep thinking about the eye doctor telling me that using the eye drops six times a day is closer to what my eyeballs needed.  How do I remember to do that?

I have to be vigilant about my feet.  When they feel numb, I know they are blue and are in danger of new chilblains.  The worst spot on my right foot turned black and then the skin sloughed off.  It was gross!  And hurt.  But that spot is better.  Now I have chilblains on my left foot.  SIGH.

With Sjogren's, I first developed the need to be vigilant about my skin.  It is now so dry that, when I pulled off my clothing, inside it is filled with small flakes.  And it hurts.  My arms and hands hurt, that is.  So, I am slathering on lotion, and some high-powered lotion at that, all the bloody time.  I especially have to do this after a shower.  If I am not careful about my hands, my skin starts to split and bleed.  SIGH.

The skin on my lips is the same.  I am having to put lip balm on them all the time now, me who was never much of a balmer.  Or lipstick wearer.  So, I am not in the habit of slathering stuff on my lips.  But, if I forget, they split open.  SIGH.  

My eyes have been getting worse and worse.  It is funny, in an odd sort of way, just how easy it is to get used to discomfort and pain.  Since I had optic neuritis, they hurt to move, but I am used to that.  When I am really tired, my eyes hurt, almost as if they are swollen.  It has gotten to the point that if I awake and my eyes still hurt, I will go back to sleep, waiting to get up until they no longer hurt.

Now, though, they constantly feel as if something is is in my eye.  Both of them.  Last night, though, it got worse and worse and worse until I was frightened.  Hence, the hot compresses, trying to keep the outside of my eyes moist whilst apply drops to the inside.  Hours and hours later, the pain level in my eyes dropped back down to manageable.

I need to be more vigilant about drinking water (that will help my eyes) and more vigilant about using those eye drops and using them more frequently.  It is my most fervent hope that the gel and the gel drops (I bought bought to be on the safe side) will help with the bad days and make this whole dry eye thing more bearable.

I am weary of the need for vigilance, though.  Not standing too long, resting enough, taking medication, drinking enough, getting enough sodium, slathering enough lotion, using enough eye drops, having enough frozen ice packs, etc.  It goes on and on and on.

I want to be well, to feel good.
Just for one day.

Tuesday, February 14, 2017

What I wanted...

Today was a terribly long day for me.  My first stop was just great.  The woman whom I had approached about cutting my hair was even more lovely and encouraging than when I met her.

I actually was $2 short in my budget for the hair cut, and that was not including the tip.  But before I left I received a treat from my Aunt that fully paid for my haircut.  That also meant that I got to pick up leave-in conditioner with my hair cut and some toothpaste when I fetched my prescription.

This is one of the reference photos that I brought with me.  What I wanted some long layers to add a bit of depth and movement to my hair, instead of just long hanging stuff.  She created layers with about six inches of difference between the top and bottom layers.  Perfect.  Because I have been cutting my hair for several years, she had a bit of straightening to do, but I didn't lose much length at all.

She also tapered the hair by my face so that she could blend in the bangs that I had cut last week (or so).  That way, it is not such a strange look to have long hair and short bangs!  Those pieces were rather long locks falling to the floor, but I managed not to panic at that part.

I don't know how to take a photo of the back of my hair and I am not sure it is all that necessary.  Really, what I got was what I wanted.  When I looked in the mirror, I was so thankful for someone who could do what I wanted on my hair.  This is the first time that I ever had someone cut my hair the way that I wanted it done rather than his or her idea of how it should be done.  I've always had to compromise some.  And even if I liked the end result, it wasn't what I wanted.  I always told myself that what I wanted wasn't important.  But it is.

The bonus was what I hoped for:  lighter hair.  I can tell a difference in weight from having layers.  And I am hoping having lighter hair will help with the pain in my head and the pain on my head.

The fun part of my day was that I got compliments on my hair at my eye appointment and when I went to have more x-rays.  That was nice.  Really, really, really nice.

When I went to get the prescription, it was run wrongly ... through my insurance instead of GoodRX. It's a ~$7 difference, so they did re-run the prescription.  But that meant waiting and waiting and waiting.  After I had already waited and waited and waited at my eye appointment.

The ophthalmologist was rather kind about re-doing the exam and was able to make some tweaks to my prescription.  The fitting ladies were patient with my having to start all over on the frame search, since the non-nose-pad frames simply wouldn't stay on my face.  I had less options, but we found one that was close to the ones I had originally picked out.  And we managed to find some really cool old fashioned frames (gold toned with tortoise shell on the sides) that still gave the fun sun-glasses look that I was wanting to have.

The frames were both less, but the lenses increased in price.  I think I should be getting $41 back, but I think that I will get $18 back.  I do not know because they kept getting so confused with the transaction that they asked me to do it when my glasses were ready.  I hope that is before my budget cycles so I can officially be within budget!

The ophthalmologist talked with me about the dryness in my eyes from the Sjogren's.  It really STINKS.  They hurt all the time, and they feel as if I have something in them, like an eyelash.  I told him about the Systane Balance eyedrops.  I was using them twice a day, he said to use them as much as needed, even if that was six times a day.  I think my vision is better with them, so I thought that was good news.  He said they were not addicting and none of the ingredients would not build up in my eyes.

He also gave me gel drops to try and talked about trying straight gel at night.  I ordered that when I got home and am looking forward to trying the gel on Friday.  I am weary of dry and painful eyes.  Very weary.

I had to wait more at the lab for the x-rays.  My GP is pretty awesome because, after lying in bed and thinking that we only had the right side of my pelvis imaged, I messaged and ask if we could have the left side imaged, the whole pelvis since I would bet really good money that my left SI joint is also arthritic.  If it is, then I think that would inform whatever PT plan I'm given.  And if not, and yet it hurts all the way across my pelvis in my lower back, then I am thinking that will also inform whatever PT plan I'm given.  She agreed and sent orders for more x-rays to the lab.

I dragged my weary self over there tonight because I wanted the report ready for my PT appointment on Friday.  As I said, there was a wait.  There was a man there getting blood work done for two of his charges, both of whom were mentally challenged.  One of them wanted to talk to me, the social oaf, about his hospital stay.  At first, I thought that it was sad that he was clearly wanting to share that medical experience.  Then I thought it was sad that he and I were the same.  And then I was jealous that he had someone there with him, even though it was clearly a paid service.  SIGH.

I stopped at Panera on the way home since the manager said I could have a free meal to make up for the one last week that I took home and found rotten avocados.  When I spoke with the manager, he tried to tell me the avocados were merely browned from the air.  So, I showed him the photos I took.  And he grew quiet.

Not wanting to risk more black avocados (that was my third rotten avocado experience), I tried the Thai wonton broth bowl.  Frankly, I thought it was stellar, but, oh, my are those broth bowls expensive (even as a free dish!).  I got a sandwich, too.  And a cinnamon scone.  Mmmmm.  Cinnamon scones!

By the time I got home, I was too weary to eat almost.  I held Amos (he demands that before anything else), let him outside, fed him, and spent some more time holding him on the sofa before trying the broth bowl.  I do wonder, though, if a broth is full of vegetables and stuffed wantons, how is it not a soup??

I swear Amos said he liked my hair cut, but maybe I am imaging things....

Monday, February 13, 2017

A plan and a door...

Firewood Man came over this evening to measure out the area where I have wanted privacy screens (well, if I couldn't have a whole privacy fence) in the far end of the back yard to the left of the garage.  When I sit on the bench there, I can see 17 garbage/recycling bin.  Not all that restful, if you ask me.

I have gone round and round and round on what I wanted Firewood Man to do.  And, of course, I have sort of gone round and round and round on the money.  But I have that worked out and am ready to move forward.  Even if, maybe, some might think I should invest in the physical therapy instead of blocking the view back there.

What I LOVED about Tim's visit is that he came up with a PLAN.  I really, really, really need PLANS these days.  To have steps and processes and procedures for getting through things, for making decisions.

He actually made a change, suggesting that we pull the fence line back off the alley about two feet.  That way, any snow plowing and the like wouldn't endanger the new privacy screens.  By doing that, we can also adjust the posts so that we can set them 8 feet on center so that, if ever a privacy fence was in the future, then those new posts could be used.

By doing that, too, we will be taking out the existing chain link fence in that area, saving all but the posts in the garage for re-use if someone wants to remove the little haven I want to create.

The fence will be 8 feet by the garage, 8 feet by the alley, and then 12 feet along side my neighbors garage, to more fully block the garage view.  In that area, Firewood Man will be putting paving stones down, so it will curve from the garage over to the side fence.  Since he knows I don't like to have mud in the yard because of Amos' paws, Firewood Man is going to bring gravel to fill in a base. It will be grey and dull for a while, but not muddy!

He's going to saw the pole on the chain link fence where it will end and put in a metal post right next to the wooden one to have a clean edge.  Maybe it will look odd to others, but to me, I will like that.  A single line of fencing.

We are using privacy lattice. We have gone round and round and round as to how we should do the panels, but, after looking at a fence in the neighborhood that I think works a bit like what I want (it's around a play set).  With the spacing and what I want, we are going to do the panels in 4 foot sections.  So, tall and narrow instead of doing two wider, longer horizontal panels atop each other.  That way, if we need to adjust by the garage (a possibility), then we will have all 4 foot sections and then a smaller one right adjacent to the garage.  I like how he's planned for possibilities because, when you dig, you never know what you will find.

The lattice will be held in place with trim on both sides, having the back side flush so we can have a bit of a corner round (but square) look to have multi-level trim.  The fence posts will be capped, similar to the ones on the railings of the back porch and airing porch.  And we will seal all the wood later.

I am excited.
We have a plan.

Firewood Man also helped me with a fix in the basement.  The piece of wood that holds the door to the ancient wooden cabinet in the utility closet had come off.  The very old nail popped out in late December.  I tried to make a repair using a screw that had no threads at the top (so the wood could easily spin on it), but my drill ended up stripping the head.  I asked Firewood Man to bring his drill and a grippy thing (to get out the stripped screw).  He did and, using the second screw I found like the first (yes, I have a stash of screws and nails all divided into little compartments), Firewood Man repaired the door.  It closes now!

No more holding shut that door whilst opening the freezer door!
Visual rest in the utility closet once more!

Firewood Man often shows me much mercy in things like that, in helping me restore order or visual rest to some place in my house so that it does not drive me nuts.  He also recognizes when I need to DO SOMETHING even if he is the one doing it.  Yes, if all goes well, he will be doing something this weekend!

I made a plan with my GP's nurse last night (this morning).  Next appointment is going to be talking about options for addressing the Trigeminal Neuralgia.  She wrote to me today saying that chronic pain changes people, fundamentally changes them.  I do not doubt that.  She was telling me not to punish myself for how I see myself these days.

I can bring up two topics in my 30-minute appointments, so the other one will be a new diagnosis from this past appointment:  Gustatory Rhinitis.  Yep, my nose has started dripping like a sieve whenever I eat.  I sit down to a box of tissues with every meal.  SIGH.

I've been reading about it and there is a medication that I can try.  I am going to ask about it.  It is on my formulary as a Tier 2, so it is possible ... budget doable.  I'll have to pay to try it, but if it does work with me, I can get a 90-day supply for free.  After all, tissues with your meals is just not as enjoyable as having candle light with your meals.  SIGH.

I have a plan for my yard and a plan for my next GP visit.  And I have a door that closes.  Yay me!

Sunday, February 12, 2017

This life of pain...

I suppose I should not be surprised that I shared that image of Trigeminal Neuralgia and ... BAM ... another attack.  This morning.  11:47.

I have been so blue all day that I am struggling to find the words.  Afterwards.  Afterwards, I lay in a huddled mass on the floor and just wept.  I. Can't. Handle. This.

Life with migraines is pretty awful, when they first started and I was caught in the chronic migraine cycle, I thought I wouldn't survive it.  But as awful ... as terrible the pain of a migraine is, it is nothing, absolutely nothing compared to the brutal, crushing, suffocating pain of Trigeminal Neuralgia.

And, frankly, Trigeminal Neuralgia pain is not good for my PTSD.

A while ago, I read the following.  I am not sharing it because I am praying or even thinking about Psalm 23.  I am sharing it because of just how incredible the prayers of the Psalter are.  Really, how incredible is the Word of God.  It shows such an unbelievable intimate knowledge of the human condition.  It is powerful.  It is performative.  And I wish with my whole being it was being poured in my ears at this very moment.  SIGH.

Hunted by Goodness & Mercy
by Daniel Emery Price

There is no Psalm as well known as Psalm 23. Sometimes when a portion of Scripture is this well known, it becomes a sort of cliché or platitude. You also see this with John 3:16, Romans 8:28, and many others. But these texts are well known for a reason. They contain comforts and promises that Christians have clung to from the time of the Early Church.

Recently, I started preaching through the Psalms of David and came to Psalm 23. I have read these well-worn verses countless times but in preparation for my sermon, I was surprised at how the comforting words of David hit me as if I had never read them before…

  • The Lord is our Shepherd who brings us to His soul restoring Water.
  • He walks with us through the desperate valley of the shadow of death.
  • He comforts us with the rod of His cross, and He uses it to defeat death.
  • He faithfully guides us with the staff of His Word to His gift-laden Table.
  • He serves us Himself in the presence of our enemies: sin, death, and the Devil.

Every line is rich with wonderful, peace-giving words of comfort, hope, and promise. Psalm 23 is only six verses long, but in that sixth and final verse, David says something utterly incredible—and it’s easily missed.

“Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord forever.” —Psalm 23:6

“Follow” is not a word we struggle to understand. It’s a word we use all the time. If I’m going somewhere with a group of people and I don’t know the way, I will say to someone else who does, “I’ll follow you.” And in the context of Psalm 23, I think we all assume “goodness and mercy” following us means something like “they will always be around” or “we’re never far from them.” But that’s not really what the text is saying.

The word we translate as “follow” is the Hebrew word “radap.” It means: “to pursue or chase down.” In other words, God’s goodness and mercy are not passively hanging around behind us. They are actively pursuing us. They are chasing us down. Like a lion hunting its prey, so the goodness and mercy of God are hounding us. God is the Hunter, and He has given chase. There is no escape. We will find ourselves caught time and time again by a good and merciful God.

We know David had days of incredible victory and days of incredible defeat. Days of humbling obedience and days of impassioned sin. He had days of meditation on the Word of God and days of running, wondering, and even brazen unrepentance. But he makes no distinction between any of these days when speaking of this relentless goodness and mercy of God. Their unstoppable hounding has been the constant through “all the days” of his life. And so it is with us.

Psalm 23 tells us we have nothing to fear. Even when we find ourselves in the valley of the shadow of death, our great Good Shepherd goes with us. And those rapidly approaching footsteps you hear are not those of the Devil coming to do you in—they belong to the Holy Hunter, and they are known as the goodness and mercy of God.

I have said to the social worker and to my GP and to pretty much anyone who will listen.  I don't know how to handle this new life of pain.  I absolutely do not know how to handle life in which, at any moment, I can have an attack of Trigeminal Neuralgia.  How in the heck does one do that?

Saturday, February 11, 2017

The suicide disease...

Today, I learned that trigeminal neuralgia is know as "The Suicide Disease" and is frequently described as the worst pain known to man.  I was immediately comforted by that!  Sounds strange, I know, but dealing with the pain in the side of my face, mostly my tongue, has nearly felled me at times.  I fear the next attack with my entire being.  SIGH.

I found this image on a search of a hashtag for trigeminal neuralgia.
To me, it is perfect.
To me, it is me.

The reason that I was looking at that hashtag was that the Facebook Group Chronically Hopeful posted this and asked for submissions.  Being an ex-researcher, I found the entries (the data) both fascinating and another argument for what a wide reach an invisible illness support group would have.

I copied the responses to Pages and set about working on turning them into a list.  Once I did that, I turned them, temporarily, into a plain text document in order to break the links so that I could edit them.  Next, I used this totally awesome online tool to put them into alphabetical order.  Finally, I turned them into initial caps so that it is easier to read the list.

I suggest reading through it to see just how many folk are struggling with chronic illness that is primarily invisible to others, folk who are often accused of faking it or being a head case.  SADNESS.

Note: There were 34 respondents.  The numbers in parentheses after a hashtag indicate repeated entry among respondents.

#Anxiety (3)
#ChronicVertigo (2)
#Depression (2)
#Fibromyalgia (5)
#Hashimotos (2)
#KeepFighting (2)
#Lupus (3)
#Migraine (2)
#Neuropathy (3)
#POTS (2)
#Raynauds (3)
#RheumatoidArthritis (2)
#SjogrensSyndrome (2)
#Spoonie (3)
#StayStrong (2)
#TN (2)
#ZebraStrong (2)

Friday, February 10, 2017

My marathon...

One of the reasons I have been thinking about having a hair cut—an expense I normally eschew—is because the nerves in my head have been making me more ill than usual.  I cannot bear to have my hair up.  I cannot bear to have it down.  My hair hurts and when I wear it up the weight of it on my  nerves are making me nauseated, dizzy, and weak.

Every single time I have gone in with long hair and asked to have layers, I have been told that that isn't possible with long hair.  But if you Google "long layers" and click on images, you will see a plethora of photos of women with long hair that is layered.

[Why is it that when you have waist length hair and you try to have a trim, you walk alway with six inches or more hacked off?????]

I talked with the stylist for a while, going through the photos I brought her.  She seemed to understand what I wanted and actually didn't even let me finish saying that I was told I couldn't have layers—"That's not true."  As interruptions go, it was a consoling moment for me.

Tonight, battling pain and nausea all evening, I am actually thinking of asking her to take off that six inches before layering my hair.  I thought that I could have a little relief in the weight part, if she could cut it in such a way that growing out would be okay.  The stylist—her name is Abbie—said she could blend in the bangs I cut myself a few weeks ago ... if I wanted.  I probably want that.  Maybe.  It's not like I spend any time on my hair these days.

I rarely even brush it.

Holding my arms up is hard on my heart and oft makes me faint.  I am really great at washing it in just a few minutes.  And I wash it less.  SIGH.  I comb it out in the shower and then again after toweling it dry for just a few minutes and putting in some moisturizer.  Usually, the next time I brush or comb it is the next time I wash it.  Having my arms up is my version of a marathon ... one that happens in mere minutes and leaves me just as exhausted.

Having long hair is the only thing I have ever liked about myself, the only thing that I ever though was attractive and, frankly the only thing about which I've received compliments from the opposite sex.  I don't want to cut it.  I would, however, like to find some sort of way to have a bit of relief.  I mean, the nerves in my head will bother me no matter the length when it comes to laying down or leaning my head against something.  And, after a day or so post hair wash, sometimes less, the movement of my hair will hurt no matter how long it is.  So, this isn't about going bald, though I sometimes think that is what I should do.  It is about seeing if there is a happy medium somewhere.  One outside L'Engle's A Wrinkle in Time.

Can I find a way to make my marathons a bit easier on my body???

Wednesday, February 08, 2017

A good thing...

I often wonder if is it wrong to ascribe something to God without ... knowing. 

Yesterday, my GP was really, really insistent on starting Physical Therapy for the pain, since there is not a female pain specialist that I can see.  She wanted to x-ray my hip to see why I was having new pain in that area with the flare I've been laboring under, but her plan was PT.  

My GP also essentially forbid me to continue taking ibuprofen on top of the Celebrex. I burst into tears at her words because it is the only thing that has made this pain flare bearable.  I saw this long dark path of misery ahead of me.  I deal with pain every day in many parts of my body, but the level of daily pain since this flare began has been terribly difficult to swallow.  

I am grumpy. 
I am quick to become upset.  
I am melancholy.

Today, the PT's office called for an appointment, telling me that my GP had already spoken with the therapist and the therapist's nurse to be very specific about helping me. I hemmed and hawed and felt pressured into making an appointment.  So, I made one for the 17th, because I already have two appointments on the 14th and one on the 21st and I need rest and recovery time between the work of getting ready and going out to appointments.

I hung up the phone and cried again because I kept thinking, How will I pay for the appointment?  As a rule, I do not charge things without a way to pay for them. And the clinic said I would have to pay up front instead of when the claim was processed and billed, as I do with all of Parkview.  Setting aside the money for my next prescription and for the monthly alarm system payment, I have just $16 left for this month.

Well, a while ago I made a referral to my realtor for a guy who wants to flip houses.  If all goes well, she'll be doing both transactions on each house.  Tonight, she stopped by with a card, telling me that she closed on the first house. She wanted to give me a little something for the referral.  In the envelope was $80.  That means I can pay for two PT appointments, which, hopefully would at least net me some stretches and exercises I could do on my own.

To me, when I counted out the cash, it seemed like God was telling me not to be so hopeless about the pain.

My friend Emily said that this is what is meant by praying "Give us our daily bread."  I hadn't thought of that.  My friend Mary reminded me that good things come from God.  Of course I know that, I believe that, I can quote the verse (James 1:17), and I can even sing an old evangelical praise song about the verse!  Gosh I wish my mind would remember the important things.

Definitely getting the funds for two PT appointments is a good thing.  

Every perfect gift comes from the Lord
From the Father of lights
From the Lord of love
This joy that I have that I’m singing of
Is from the Lord, from the Lord
That’s where the joy comes from
That’s where the joy comes from
~Steve Green

An old professor of mine used to preach when his pastor was out of town.  He would send me tapes of his sermons and in his booming southern accent, I can still hear him preach:  If it's good, it's from God.  Period.  End of discussion.  How could I forget that?

I am thankful for friends who remind me of the things of faith and teach me the things of faith.
I am thankful for a surprise thank you for the referral.
And I am thankful for the care of my Good Shepherd.

Sunday, February 05, 2017

Words, wounds, and clouds...

A few days ago, I tried to engage with a family member of a friend online.  I know that she and I come from different world views, but I also know that we have lots in common.  Concerned about some false teaching she had about the bible, I tried to talk with her about it.  I ended up getting attacked, but attacked in a way that has really felled me.

Words can create such deep, deep wounds.
I was flayed with my most secret fears.

I am not angry at the person.  That's one thing that came up in counseling.  I don't get angry.  It strikes such fear in the little girl in me, the little girl who came forth several years ago and has yet to find safety.  Anger, in our family, often meant drunken violence.  And if not drunken violence then it meant being flayed with words.  Ugly words.  Stabbed with fears and insecurities, twisted within you, and then pulled out and used to scrape off all your skin.

I fear that if I get angry, I will never stop.
I fear that if I get angry, I will wound others the way that I have been.

The thing that I have not yet learned is how to live with the deep wounds of words, of your fears being used to flay you.  SIGH.

I have also been battling more nausea than ... usual.  [What an odd thing to write.  Usual nausea.]  For several weeks, I have had nausea in the early evening, in addition to the violent waves of nausea that toss me about usually starting around 4:00 AM.  I have been trying to gut my way through it, though from time to time I break down and take more Zofran.

Today, I had nausea round the clock.
Nausea.  A dose of Zofran.
More Nausea.  A dose of Zofran.
More Nausea.  A dose of Zofran.

Zofran does work.  Sometimes it takes a while, but it does work.  The nausea subsides.  Up until a few weeks ago, that was it.  Once I got through the nausea each morning, I was good for the rest of the day.  The past few weeks ... nearly a month now ... that hasn't been the case.  Twice a day STINKS.  I've now had three days where it was all day.  Not three in a row, mind you, but three.

I did notice yesterday and today that the gastroparesis has been particularly bad.  My stomach has not been emptying all that quickly.  It made me realize that it has not been a real problem for a while now.  Cycles.  All this crap often goes in cycles.  Or,  more specifically, flares.

I suppose I need to be a bit better at ticking off those silver linings.  All I can think of the moment (and I hope I'm not jinxing myself) is that for months, I couldn't get through the night without having at least one blood sugar crash, if not two or three.  Something like July through October-ish.  Since then, I have had but one or two crashes and no more.  None since Christmas, for certain.  That is a big, fat silver lining.

I cannot think of any others, though.
Just more storm clouds.
Especially the fierce, black ones of Sjogren's.

Friday, February 03, 2017


I have learned a few new recipes that have added to my general store of tasty recipes.  Although, at the moment, I do not have the next recipe up for trial.  Strange that.  I need one!

A while ago, Keebler stopped selling their Honey Grahams.  At first, I couldn't find them in the store, but I could online.  Then, I couldn't find them online.  So, I have tried graham crackers from the stores around me.  CVS, Walmart, Target, Walgreen's, Menard's, Meijer, and Kroger.  Frankly, I did not really like any of them.  Walgreen's is the best, but also the most expensive.  The least expensive is the brand at Menard's, but it is also the least tasty.

Then, I got the idea of trying to make my own honey graham crackers and hit a home right on the first swing!  The taste is great, whether you make them crispy or a bit soft.  I did change on how I got them ready to bake because many of the reviewers of the recipe said the dough was sticky and hard to roll out.  I decided to just slice the dough, since it is refrigerated.  The second tray, I actually froze the dough for a while.  I still have half the dough and look forward to having more homemade graham crackers, even if they are a bit oddly shaped.

Pati Jinich's newsletter had a scrumptious looking recipe for pomegranate short rib tacos.  I bought all the ingredients for them, but the short ribs.  I went to three stores and called two more.  I also went to one meat shop and called a second butcher.  I don't think that my city has them.  I really wanted to try the recipe, so I decided to do so using the pork sirloin I use when making Spicy Dr Pepper Pulled Pork.  Basically, I made Pomegranate Pulled Pork.

Just look at the inside of the lid on my dutch oven!  Tasty, though.

Of course I wanted to make the tacos!  The original recipe calls for an avocado mash/guacomole.  But I got the idea to try the tacos with goat's milk cheese. That set me to thinking about the avocado and I finally came up with the idea of trying an avocado dressing of some kind.  I ended up with an avocado cream.

I made the tacos using my blue corn flour tortillas.  Man!  They were so very tasty!  I had them the next day on the Texas flour tortillas.  Both were tasty.  I will have to try them again each way before knowing which I prefer.  Once.  Twice.  Maybe thrice more and I might know!

I did try one more recipe, but I did not quite get it right, so I want to try again before posting.  It is eggs baked in hash browns.  Mmmm.  Even though I did not get them crispy enough, I still enjoyed eating them.  Hopefully, the second time will the a charm.

Thursday, February 02, 2017


I cannot believe that it has been more than two weeks since I wrote here.  Missing days bothers me so very much.  But, then again, most days are the same for me, in just different shades.

I am not doing very well handling the increased pain and the ever present pain.  I have been working on stretching my hamstrings for about three weeks now, since I read that can help with lower back pain.  Only stretching hurts more than even the arthritis.  Not as much as the trigeminal nerve pain, but still so very painful that I only stretch for a few minutes at a time.  Seconds on each leg.  Repeat.  Try for one more.  Stop.  Weep in frustration.  I can straighten my legs more, but I am not sure it helps the arthritis in my back or the flare of pain I am having.  SIGH.

I gave up and started taking ibuprofen, once I realized that it helps.  I'm not supposed to take ibuprofen because I'm on Celebrex.  But Tylenol, Aleve, and Aspirin didn't help at all.  I'm also not supposed to take ibuprofen because of the bleeding lesions in my stomach.  But I did learn that the Prilosec helps protect my stomach from ulcers so ... I choose less pain.  The ibuprofen makes life bearable.  SIGH.

That and heat.  I've become nearly inseparable from my heating pads (one upstairs and one downstairs).  I don't know why my hip has started hurting, but it has. My right one.  So, I have the heating pad on that most of the time.  SIGH.

For months, I have struggled with having dysphagia as a new normal.  It has felled me in a way I cannot really describe.  I mean, I think that daily battling nausea has made me even more desirous of eating tasty food when I am not nauseous.  And when I have swallowing problems when I am trying to eat, I want to scream in frustration.  A week or so ago, I had just started enjoying Spicy Dr Pepper Pulled pork tacos and it struck.  I couldn't swallow my second bite.  I spent 30 minutes trying to finish that swallow.  Then I don't know how long trying to swallow my fear over what happened.  Truth be told, I haven't finished that swallow yet.  SIGH.