Tuesday, July 31, 2018

24 hours...

Well, my first go-round with the hospital patient advocate line worked really well.  What an incredible difference 24 hours made!

I received a call from a supervisor in the radiology department.  He listened to my concerns and the three accommodations that I am requesting.  He then went through each one very carefully.  Sadly, where I live, there are 27 radiologists, but there is just one female.  Or at least in the practice.  And they are independent, like neurology and orthopedics are, so the hospital has nothing to do with their work schedule.  So, it is most likely that I will have a made radiologist do the spinal tap.  But the supervisor is going to talk with whomever it is about minimizing touch with me.

However, BECKY CAN BE IN THERE WITH ME!  I am beyond excited.  So giddy am I, in fact, that I doubt I will be sleeping tonight.  I just cannot believe I went from no one can come in with you to she can be there in just 24-hours.

The news made for a better day today, even with three bouts of nausea.  I did manage to get to the bank in between them and to eat some of the Peruvian pork stew with chilis, limes, and apples.  Something about having regularly tasty food helps me endure the violent waves of nausea just a little bit easier.

I also listened to this talk  "A Dirty Church, Body Shame, and God’s Twisted Smile" by Chad Bird, which made for a pensive evening, ruminating on my own shame and the sweet, sweet gospel Chad presented.

Would that it were I could grasp it.

Monday, July 30, 2018

Crashed and burned...

I felt like I crashed and burned today in my attempt to advocate for myself, but Becky noted that it was the radiology department personnel who did so.  Feelings can be tricky things ... especially when you inherently believe that you are always the one in the wrong.

I do have a difficult time advocating for myself, even though I rehearsed it with my therapist.  You see, I picked today as the day that I would approach the radiology department about three accommodations that I wanted for the spinal tap that is scheduled two weeks from today:

  • Female staff (if not available then someone to talk with the male radiologist about minimizing how he touches me and definitely no comfort touching, like the arm or shoulder)
  • Surgical underwear for beneath my gown (and really lots of blankets, but I am not sure there will be blankets in there).
  • Becky to accompany me.

I do not believe that any of the three are outlandish or even out-of-the-ordinary requests.  However, I also do not believe that I am worth the time and effort it will take for at least two of them.  And the third is probably against established procedure.  SIGH.

I want Becky there because I know that she will help keep me calm, should the need arise.  I mean, seriously, this is going to hurt.  The lidocaine shots alone hurt.  And I have those pesky nerves that overreact and have disproportionate responses.  I want Becky there because I will be struggling with shame and fear and pain.  I want her there to help me keep from melting down, because folk who melt down in hospital settings often calmed down medically.  I do not want that to happen to me.  Such drugs take me eons to metabolize and leave me tremendously vulnerable.  Plus, if Becky is there, perhaps I can be braver than I normally am, not wanting to embarrass her or unduly distress her.

And I don't want to be alone.

I called and asked to speak with someone about the spinal tap and this woman at the radiology desk said she could help me.  Only once I started talking, she was not interested in helping me.  She was busy.  She didn't know the schedule.  She asked me to call back next week or so.  Well, no, that would not be a good idea since I know that it will take time to check staff schedules and, perhaps, change my appointment, to fit the lone female radiologist on staff.  She finally just asked for my number and said that she'd call me right back.

She didn't.
I knew she wouldn't.

After thinking on the matter for a very long time (and posting on Facebook), I decided to try the patient advocate route.  At first, the woman who called me back from that department was suggesting that I simply have the ordering physician ask for the accommodations.  But that did not work so well for me with the colonoscopy.  Plus, the neurologist is outside of the Parkview system and it has taken her nurse more than a week at a time to get back with me on the two questions I have already posed.  I feel the direct route with the department is best.  I mentioned the lack of follow-through with the colonoscopy staff and how I wanted to try to avoid that scenario repeating itself by talking with the staff in advance.  Then, the woman sort of changed her tune and said she would start by talking with the head of the radiology department to see what could be done and how to go about it.  She started to say she would give me an update in the morning, but I told her that I understood that these things would take time and that I wasn't expecting a speedy response or was in need of regular updates to feel as if something was being done.  So, she then said she'd probably be able to get back with me with a plan in a few days.

You know how I like a plan.

For me, asking for female staff brings shame.  But I also struggle with deep shame over my response to male staff.  Shame and fear and flashbacks.  The same is true when I cannot wear anything beneath a hospital gown.  Underwear is safety to me, albeit a tenuous one.  I have a greater capacity to be ... normal ... when I have underwear on.  But I don't like being the person for whom this is true.  I don't like needing such things.

Because I don't like the response I normally get to such requests.

Being a bother.
Needing to get over things.
Being a head-case.
Being weak.
Being mentally ill.
Being troublesome.

Neither a history of sexual abuse nor PTSD is mental illness.  Folk seem to forget that.  But neither is something that you just "get over."  Would that they were.  SIGH.

With the woman in the radiology department and the patient advocate, I emphasized the PTSD and never once mentioned a history fo sexual abuse.  I focused on trying to eliminate triggers.  I thought that this might keep things ... well ... not mired in the idea that I am mentally ill or the sexual abuse.  I suppose I'll learn in two weeks whether or not the emphasis helped or hurt.

Sunday, July 29, 2018

Another plan...

Last Saturday, Becky and her whole family came to visit through Thursday.  It was a simply glorious time for me.  Some of Gary's family now lives in Fort Wayne, so they split their time between family and me.  This enabled me to get some rest in between visiting, which made the visit all the better.

Saturday, they arrived earlier than expected, so it was like a bonus day for me.  I slept Sunday.  We visited Monday and Tuesday.  I slept Wednesday.  And they left Thursday.  I also had mornings and evenings with them, so my share of the Kulp visit was extended.

I really only did simple cooking, and I messed up the menu since I forgot to make a written plan.  But they are very forgiving and gracious and are willing to go with the flow when need be.  I did try to make the visit as restful as possible by cooking when I could and doing the dishes primarily myself.  I dare say my scrambled eggs made the mornings better.  Well, especially that was true on the morning that we had breakfast tacos.

I would prefer breakfast tacos every morning!

Becky had brought a fair amount of tasty snacks for her family, along with some delicious chocolate. Not having tasty snacks in my budget, I am afraid I lost my head and begged for some of each of them.  Well ... LOTS of each of them.  And I flat out asked for all of the raspberry cream chocolates once I had one.  They reminded me so strongly of a tasty chocolate that I have not been able to find for eons.  Becky, being pretty much the kindest person I've ever met, gladly gave me the bag of chocolates.  And, at the end of the visit, it didn't take much arm twisting for her to also give me the remaining chocolate-covered pretzels.  Whoever invented such a wicked chocolate idea was a genius!  The salt with the chocolate was simply divine.

The thing is that I am not so good with sharing tasty stuff.  In fact, I stink at it.  So, it was like heaping coals of fire upon my head with all of her sharing.  Still, my greedy, gluttonous self happily grabbed ahold of all that she gave me, and I have been indulging ever since they left!  Well, except for the raspberry cream chocolates.  Those are almost too precious to eat!  Of course, I'm certain I'll get over that soon enough.  For now, they are in a mason jar so that they will stay fresh.  Mmmmm!

Amos has been positively morose ever since they left.  He was so very happy to have everyone in the house, especially since three of the visitors were really, really generous about playing fetch with him. His nervousness abated almost instantaneously, and he took a real shine to Gary.  At night, since we went up to bed last, Amos had to stop and check on his visitors, stopping to listen and to sniff at each door.  He did the same both going down to and then coming back up from breakfast.  And since Josh slept with his door open, Amos had to spend extra time with him before heading back to his own bed.

He keeps checking the spare bedrooms and the solarium upstairs for his missing visitors.
Poor puppy dog!

It might have been harder on me with them leaving, but two weeks from yesterday, Becky will be back for one of her week-long visits.  Of course, I have to endure the spinal tap whilst she is here, but other than that we will have lots of tasty food and watch lots of engaging movies and shows and will play lots of enjoyable games (which hopefully I will win)!

I have been sleeping lots since they left.
However, I have also been sleep lots before they came.
"Nap" is now my middle name.

Today, I had another terrible, terrible Pudendal Neuralgia flare.  Trigeminal Neuralgia flares hurt worse, but they are so very brief in comparison.  Plus, for me, the Pudendal Neuralgia flares bring an onslaught of flashback and shame.  Each time it happens, I think that it will be the one that breaks me, that causes me to give up on this life of mine.  For me, there really are no words sufficient to describe both the pain and the shame.  It is a burden I feel is too great to bear.  And yet I must if I am to stay here in this life.

I tried to busy myself afterwards to keep from thinking of the trauma that comes with enduring such.  I stripped the bed and took care of my laundry.  I gave Amos a foot treatment.  I vacuumed the first floor.  I cleaned the bathroom.  I watered the pots on the porches and out in the haven.  I re-filled both fountains and all four birdbaths with water.  I brewed tea.  I ordered my medications from the mail-order pharmacy.  I placed this quarter's order from OTC Essentials, a program through my Medicare insurance company (cotton balls, q-tips, lotion, triple antibiotic, vapor rub, epsom salt, and Biotene mouth spray).  And I number-crunched .... and crunched and crunched and crunched. 

The latter was, in part, working out how to allocate what I call "extra" money.  A friend and her husband have shared their money with me a few times, which I have all put toward medical.  However, I have not known what to do with extra money with regard to the budgeting and reconciliations that I have been doing.  For example, I got a tip for making a referral, a $100 one.  How do I allocate that money?

I mean, I would love to just spend it.  I could easily spend it.  However, I want to be able to follow a plan for extra money the way that I have a plan for my disability money (my budget).  When I have gotten medical survey money, I have just spent it on whatever I wanted.  That sounds good, but it isn't.  Being so very ... tight ... means that I need a plan for how to spend everything not just the monthly distribution from Social Security.

I kept trying to reach the financial advisor who has been helping me, but we've been ships passing through the night.  I wanted her to tell me what to do.  I wanted anyone to tell me what to do.  Silly that extra money could be so stressful.  Welcome as it is, the money is still stressful, because I am trying to very hard to find a way to live on what is really not enough.  When I have extra money, I do not know how to account for it in my budget or how to spend it.

I did finally come up with my PLAN:

Medical     40%
Dental       20%
Savings     25%
Treats        15%

Medical:  Whilst I am now budgeting medical directly out of my monthly stipend instead of just winging it, I still am not covering all of my medical expenses.  I have earmarked $250 to cover doctors, prescriptions, and prescribed OTC items.  I've yet to have a reliable way to pay for blood work, labs, and x-rays/scans.  Hence, the 40% to medical.

Dental:  I worked out the automatic savings amount that I need to pay for all my dental expenses, $67 a month.  Right now, I am only saving $40 a month, because that is simply all I could do this year.  So, by the end of 2018, my dental savings account will al ready be low.  I also have that pesky 4th cavity which needed filling.

Savings:  I do not have a savings account that is not already earmarked for something.  I think it would be good if I started a savings account that is full of money that could be spend any which way but loose.

Treats:  A new friend sent me a very generous check in the spring with which to treat myself.  I have been trying to stretch the money as far as possible.  I have also added a bit of money here and there, because I like the idea of one guilt-free treat, such as a grilled bacon and artichoke heart sub, a month.  Mmmmm!  My spending has to be so very utilitarian that I was glad to hear the financial advisor say that I need to be spending more on myself.

Now that I have a plan, I will deposit the cash and then transfer it to the accounts listen above.  I am so very relieved to have a plan, to have a process to allocate (Divvy up) extra monies.  I added a spreadsheet to my number crunching.  When I was finished, I was so relieved that I ended up having another nap.

Plans are a true blessing for me.  They help create boundaries and relive uncertainty.  I am so very blessed to have friends who understand the need for plans in my life and to help me create them.

Wednesday, July 18, 2018

A first harvest...

Today is the day that I would have stepped up another 1/4 dose on the saliva drug (pilocarpine).  But it is a day that has had me battling exhaustion the entire day.  I was able to get up and take Amos outside, but soon thereafter, I found myself struggling to stay awake again.  So, I napped.

It wasn't until after 5:00 PM that I could manage to get up and try to move some.  I fed Amos and then forced myself to go down to the treadmill.  I wanted to then go nap some more, once I cooled down, but I had harvested my first eggplant before walking so that I would then be forced to cook some dinner.

I Googled when to harvest and learned that you don't want them to get ripe, because ripe eggplant is inedible.  I also read that smaller ones are rather tasty.  Since I am the only one here, I thought this one-serving sized eggplant would be a good trial harvest.

I dipped the slices in milk and egg and then in seasoned flour and sautéed them in olive oil.  I used some of my homemade ranch dressing as a dipping sauce.  The Internet was right.  Young eggplant is divine.  It practically melted in my mouth.  I look forward to eating the other nine eggplants that are growing at the moment!

The dishes washed, I collapsed on the sofa again.  I wonder if the predinsone is a factor in my exhaustion or if it is merely a combination of having both Dysautonomia and Sjögren's.  I want to say that the two medications have something to do with my excessive napping, but I do not feel drowsy all the time.  By that I mean, if I nap, then I awake a bit refreshed and am able to get up and do things much of the time, for a little bit, before needing to nap again.

But then there are days like today where I am so very bone deep exhausted that nothing helps but lying down.  Heck, I am so very weary that reading and streaming is too much effort!

The thing is ... Becky and her entire family will be here in just three days!  I haven't cleaned, not that they expect much.  Nor have I fetched groceries.  I worked out meal options with Becky and spent the whole day trying to work on a shopping list.  No, not a single item has been written down yet.  SIGH.

I cannot wait to see them.  I haven't seen her children in years, and I haven't seen her beloved since I moved.  I like Gary.  He's witty and kind and really, really intelligent.  I have missed visiting with him.

I sure hope I can stay awake for their visit!

Tuesday, July 17, 2018

Mind over matter...

I definitely think that the side effects of the duloxetine are easing a bit, but just a bit.  I am so very exhausted and also drowsy, so it is difficult to be awake and present.  Last night, in the shower, I swear I almost fell asleep twice.  Or something akin to sleeping whilst standing up.  Twice I found myself shaking myself back to the fact that I was standing beneath water and was supposed to be doing something.  What I was supposed to be doing took a few moments to come to mind, despite my location and the running water.

Yesterday was the refrigerator exchange.
It, too, was exhausting.

I am terribly disappointed to realize that I somehow missed that in switching to a Maytag, I lost 2 cubic feet of space.  I dearly miss that space!

The work of taking everything out of the broken refrigerator and putting it into the new refrigerator was made all the more difficult in realizing I do not have enough space for the way I had been doing my icepacks and the other freezer items.  Right now, things are not very organized on either side, and I wish them to be each and every time I open the doors, but I am weary.

Today, I dropped off cucumbers at my GP and therapist's offices and gave a bag to my realtor.  In all, I gave away 18 cucumbers and still have six in my refrigerator!  It was so terribly hard digging out the honeysuckle, but getting rid of the source of powdery mildew in the yard has made cucumber-growing finally a success.  Plus, the crabapple was being affected.  I wonder if I could grow summer squash now....

On the way back, I fetched a prescription from the drive-thru pharmacy.  I brought Amos with me because we both are more attached at the hip than ever.  Plus, I get lonely on errands.  He has gotten really good about not arguing with me when I tell him that he has to stay in the car.  Even though it is hot, I was only gone a few minutes at each stop, just long enough to drop off the cucumbers and come back out.  When we got to the pharmacy, Amos started hanging outside the window and barking at the screen.  I quickly told him to hush, but I soon realized the why behind his agitation.  Amos remembered that he gets a doggie treat in the pharmacy bag when we go there!  This is just his third time of being with me there, so I find that a bit remarkable.  Of course, it is food.  He has a mind like a steel trap when it comes to sources of food!

I am proud of how Amos has improved his car behavior.  Going to therapy with me has helped me teach him better manners.  He is a very smart little Fluffernutter.  I want to try and train him some more, especially try to train him on the leash.

Of course, he is also a very stubborn puppy dog.
And I am a weary puppy momma.

I could note one more gain that I hope is not a one-off.  Whenever Amos is in the basement, he will not tell me that he has to poop.  He will just poop.  Upstairs, he will ask to go outside.  But downstairs all bets are off.  Usually, this happens when I haven't been paying attention to his bodily needs and he's been waiting for me to get off the treadmill.  He gets up and poops ... and then disappears because he knows he's done wrong!

If I try to get him to stop, mostly by yelling, he just continues.  However, yesterday, he stopped long enough to have me follow him up the stairs and let him outside.  Even having to pause a bit in the kitchen was okay as far as the proper dispensation of his bodily waste.  I really do hope we turned a corner on that one.

Mostly, I blame myself.  The majority of the time Amos poops inside is because I haven't had him go outside ... I haven't been keeping track of the fact that he needs to go outside.  The only other time is the "fear poop" when servicemen or visitors have arrived.  The latter I doubt I will ever be able to do anything about, because it happens even when I have him take care of business right before folk arrive.  But the former is clearly on my shoulders.  Yes, I want him to ask me to go outside with him, but I know that after both meals needs are pressing.  If, in the morning, I let him avoid his fears and come back inside without doing his business, it is incumbent upon me to remember to have him conduct his affairs once we get up for the day.  I do not always do that.

Anyway, we had a great celebration of Amos being able to hold his bowels until reaching the Great Outdoors yesterday.  Yes, I was proud of him!  Yes, I told him dozens of times!!  It was a genuine triumph of mind over matter!!!


I guess you could say that is my battle of late:  Mind over matter.  Will I be able to bully my body its way through the side effects mind field I am traversing?  Right now, this very minute, it is mind over matter vs muscle spasms, neuralgia flares, and headaches.

Time for another nap....

Sunday, July 15, 2018

Side effects, birthday boxes, and frozen food...

As I mentioned before, research has shown off-label use of an SNRI in combination with lyrica or gabapentin  has helped with neuropathy more than just lyrica or gabapentin alone.  I tried taking duloxetine in December and gave up after two months, because going up in dosage was a mitigated disaster of side effects for me.  However, seeing how the pilocarpine has produced saliva for me at sub-dosage levels got me to thinking that my sensitivity to drugs might mean that a sub-dosage level of an SNRI might help my neuropathy.  So, I asked my GP to try duloxetine again.

She wanted me to try the other SNRI, effexor, first, so I did.  Two days was all I could bear at an even lower dose than the initial dose of duloxetine.  It was brutal.  So, last Monday, I started the lowest dose of duloxetine again, with the goal of trying to stay on just it for 2-3 months to see if there is any gains in the constant shocking in my hands.

It has been a long, long week.

Primarily, I have done a prodigious amount of napping.  Three days, I think I was asleep more than I was awake.  I have been napping heavily in the evenings for more than a year now, with the added exhaustion of Sjögren's on top of the fatigue of Dysautonomia.  I am weary of being weary.  Yesterday, I only had one nap and today none, but that was because I was laboring and my sister's phone call kept me on task instead of curled up on the sofa!

I have had headaches again and an increase in Trigeminal Neuralgia flares.  It is the latter that is truly discouraging, but I can say there have been less in the past two days than there were in the first two days, so perhaps there is hope.  I am not certain I can live with more of those brutal pain flares just to take this medication.

The IDON'TCARE is back.  And, to be honest, I am welcoming of it.  The numbness or distance or however best to put it is a welcome abject relief from all the things that have been weighing on my being.  I am still overwhelmed with the thought of all that I am facing, but just not also with the emotion of it.

The other neurological issue is the dystonia and tremors.  I learned that they are called extrapyramidal side effects and that one way to treat them, providing that you wish to stay on a drug that can cause permanent neurological side effects, is the use of benedryl.  I have not tried it yet, but I am thinking hard about it.  It is just that benedryl makes me so darned drowsy and I do not need another drug causing that side effect.

I am trying to deal with the dystonia (muscle clenching/continuous spasms) by mind-over-matter.  The jury is out over whether or not I am gaining ground.  I am at least aware of the problem much of the time and am actively working at relaxing.

Sadly, I am also back to sleeping in 90-120 minute increments during the night.  My sleep has been very light, but I think that is a step up from insomnia.  How you can be drowsy and have insomnia at the same time is a mystery to me.  In any case, I wake up, fetch fresh ice packs, read a tiny bit, crash, rinse and repeat.  I do that until I think that I can get up and stay up ... at least until my first nap.

I know the first two weeks are the worst, so I am working hard not to really think about how I am just now.  Instead, I have been moving from one day to the next, still in shock over my fourth cavity and all the other ways Sjögren's is attacking my body, and caught up in the battle that is trying a new medication.

However, I had an almost impossible goal today:  two birthday boxes.

Two birthday boxes means making two Lemon Greek Yogurt Pound Cakes.  Plus cookies.  And wrapping things up.  Plus taping up the boxes.  Plus writing out labels.  I am glad to report that the first task was accomplished.  Don't you think that I did a stellar job on the glaze this time??  

My last glazing was such an abject failure that I worked to improve my process.  Not once, but twice I was able to not over mix the glaze and to apply it in a more aesthetically pleasing manner.  Frankly, I wish that I was eating this!

My sister had a most brilliant idea:  Only mail half the pound cake and keep the other half to celebrate the birthday!

I must say, I was sure tempted to try out her idea.  Instead, though, I wrapped up both of them whole and (hopefully) safely packaged them up for the birthday boxes.  I have to try and get to the post office tomorrow morning, since I have a delivery window in the afternoon for the replacement of the replacement refrigerator.

Yes, the Maytag one has finally arrived.

Here's hoping to no more frozen food on the morrow.  And birthday boxes off in the mail.

Saturday, July 14, 2018

A warning...

A year ago, I seriously injured my back by digging holes to plant the azaleas.  It took about a month to heal.  Yesterday, I felt the same searing pain start as I leaned forward.  I wasn't straining. I wasn't even bending. I was just leaning forward!

I immediately froze and then slowly straightened up.  For a moment, I was transported back to being stuck in the back yard, wondering how I was going to get myself back inside.  However, I was able to walk and immediately took myself upstairs to take some Toradol.  I thought the powerful NSAID I used with my migraines might help, but it ultimately did not.  I then made my way downstairs and promptly put an ice pack against the back of my pelvis.

I don't know what a pinched nerve feels like, but I do know what neuropathy does.  This pain is searing ... almost tearing ... and nothing electrical or burning or pulsing like neuropathy.  So, I decided it must be muscular somehow.

When I lived in Alexandria, for a while there I kept getting neck pains that I learned were actually spasms in my back.  My doctor there, when I once came in just as one was happening, treated me with some sort of ice spray, which stopped the spasm right away and then had me work on using heat to relax the muscle against the pain I was still feeling.  Hence, the ice pack.

I iced my back for hours and hours and then I switched to heat for hours and hours.  And I broke down and took some ibuprofen, even though I know that my beleaguered kidneys do not respond well that that most beloved of pain drugs to me.  I took two high doses, back to back, and then stopped.  So, perhaps doing so was not too much of a danger.

You see, the thing is that I have been in shock, for a week now, struggling with a mixture of disbelief and despair about my teeth.  How in the bloody world could I have another cavity just four months after discovering that I had three?  As my mother continues to point out, I've always had the best teeth in the family.  And it was really, really, really difficult listening to the dentist telling me what fantastic shape I was keeping my teeth in—how pleased she was with my home dental care—and yet make plans to fill my tooth then and there.

So, this whole searing back pain for no reason at all has me also in shock.  I keep thinking I cannot have a bad back on top of everything else! 

I've been working on my abdominal muscles, doing the two exercises the physical therapist I saw last year directed, as well as two exercises to work on my backside, since your back is supported by your abdominal and backside muscles.  As a result, I have noticed that it is easier for me to sit up in bed.  I guess you could say that I was feeling a bit better about my back.

Not so much anymore.

I didn't walk yesterday, because I could feel the pain in my back every step I took, though not whilst on the stairs.  However, I cautiously got on the treadmill today and was able to walk.  I did skip the abdominal exercises, just to be safe.

I think that stopping the movement that was hurting me immediately and getting ice on it immediately helped to stop whatever was happening with the upper left side of my pelvis in my lower back.  And the ibuprofen.  Or probably that I am starting my second week of high dose steroids.  Or maybe it is all of that.  Or none.

In any case, I spent most of yesterday and all of today holding my proverbial breath against another injury to my back.  I am giving thanks that it was, I suppose, just a tweak.

A warning, it seems to me, though of what I am not certain.

Thursday, July 12, 2018

This day...

Oh, my goodness!

I've had four two-hour naps today and am struggling to stay awake at the moment.  I've got 41 minutes until my last meds of the day and I am trying to hang on for that.

It is as if I have taken too much baclofen or something, but I haven't.  Something is off.  Or not.  Well, I do feel more drugged than exhausted.  Only I don't feel dizzy-drugged.  Just drugged.  So sleepy that I just cannot stay awake.

It is a good thing that Amos likes naps!

A part of me wonders if it is because of this day.
This day that is so very hard for me.
And terribly lonely.

Seven years ago was the most violent experience I have ever had.  It tore away pieces of Amos and I that both of us have never gotten back.  I doubt we ever will.

I have flashes of the pit bull attack that bring up such horror that I dare not touch them.  It was such a ferocious battle between he and I over Amos.  Being dragged to the ground again and again and again, knowing that each time I got up brought me closer and closer to the last time I would be getting up.

Violent is not really a sufficient word to describe what happened.  Neither is brutal.  They are too hollow, too empty of what I experienced then and oft experience now.

Life has never been the same.
It won't be the same.
And I feel so alone with this.

Wednesday, July 11, 2018


Tuesday, I was slotted in to see the dentist and ended up with a filling for the cavity.  I still cannot believe that I have a fourth cavity.  I am absolutely overwhelmed at the way Sjögren's is attacking my body ... and the cost.  Yes, I started a dental savings account, but I've only had four months to start saving for more dental work.  Just four months!


I really have spent much of the time since I laid eyes upon that tiny black hole in my tooth in shock.  It has been a strange few days for me, isolating and devastating.  When I could, I threw myself into some labor in the yard.  Sunday and Monday, I tackled weeding all of my beds and watering by hand the bushes, ornamental trees, raised beds, pots, and baskets out in my haven and on all three porches, as well as cleaning and re-filling the four birdbaths and two fountains.  Tonight, I pruned the forsythia, the last of the major yard tasks for spring/summer.

Labor requires napping.  Lots and lots of napping.  Labor also requires not thinking.  By that I mean, labor, for me, is hours and hours of slow work in which I am alone, alone with my person and alone with my thoughts.

Sometimes, I can manage not to think.  To just be whilst laboring.  This is most easy when I am puttering in soil.  It is then that I can mostly meditate on the good gift of creation, one that continually awes me.  It is in this way that I think I have learned, in brief moments, to be still and know that I am God.  But when my mind cannot be still, when thoughts of what my life has become crowd too closely, I pray.

Sealing the fencing in the haven was not mere hours of work, but days.  During the first day, I prayed through the ins and outs of the lives of family and friends.   I did the same the second day, but I also included all of my doctors.  It was the third day that I began to listen to the sounds of my neighbors.

Amos is most particularly terrified by the sounds of the neighborhood, including my neighbors and the nature therein.  He is most at peace when we are out in the dead of night, where silence and stillness reigns.  I admit that I am most at peace when out in my haven, where the fencing also separates me from the hustle and bustle of the world around me.  I want the quiet of my space where the sounds I hear are the flow of water in the fountain and the tinkling of the wind chimes.  Well, those and whatever show or movie I might be streaming.

Before, when I listened to the neighborhood, I really only heard the cacophony, unless it was the arguing of my neighbors on both sides.  I was listening as a whole, to the collective of the neighborhood.  As I was moving the brush back and forth, back and forth, I started listening to the individual sounds of my neighbors.

Something that has saddened me is that most of the child's play I hear around me is centered on violence and death.  They mostly play at killing each other.  It is a sorrow of mine.  However, thanks to the rather loud talking of my neighbor, I learned that the pitiful musical noises coming from next door is the high school graduate giving music lessons.

I learned that a neighbor has a new baby.
I learned that a neighbor has started a new job.
I learned that a neighbor has a newly broken leg.
I learned that a neighbor has a new marriage.

Thinking about them as individuals is not really my strong suit, especially this time of year.  They are all just the NUTTERS around me who inside on using fireworks for every possible second of the fireworks-using period in this area.  Well, every possible second of the legal period and then some.

I started praying for them as individuals.  And, for the first time, I ask God to change to my heart about my neighbors on either side.  I cannot change their hurtful behavior, but I can change my attitude about them.

But it wasn't really praying about me, because I don't do that.  It was about praying for that baby, for getting the soothing that he/she needs ... and the love and the wisdom and the patience and the physical care and instruction in the catechism.

I prayed for the new job and all the ways he was going to be interacting with others, including those whom he would be serving or comforting.  I prayed for patience and wisdom and discernment.

I prayed for the marriage and the injury.  And I moved on to the others sounds I heard, such as construction and gardening and relationships.  I listened to the life around me and lifted it up to the Lord.

This listening ... I've continued.  Listening and praying.

Perhaps it is eavesdropping at medical offices.  At the dentist office, I heard a new mother despairing of her fatigue, so I prayed for her, the baby, and her family.  After all, I know a thing or two about fatigue.  I also prayed for an elderly gentlemen despairing of losing his teeth.  I clearly know about that!

It is weird, for me, to spend so much time listening and praying.  I mean, coming from the Bible Belt, praying is par for the course.  But I haven't ever been an ... interventional ... prayer like this.  Such a strange way to flee from my mind and my body, eh?

Sunday, July 08, 2018

Something done...

Amos is my shadow, inside or out.  I don't blame him.  I want him with me as much as he wants to be with me.  But, when in the Great Outdoors, his preference is to be atop my shoulders, protecting him from all the fearsome things about.  However, it is most difficult to weed and to water with a Fluffernutter on my shoulders.

His most favorite place in the yard, now, is the haven.  And, in the haven, he adores surveying the world from atop the bench.  Even if all he is surveying is his sweaty, shaky puppy momma.

I have been really struggling with spotting the spot on my tooth ... not just the spot.  It is everything that has gone to pot on my body since being diagnosed with Sjögren's.

Crap eyes.
Crap kidneys.
Crap lungs.
Crap joints.
Crap teeth.

It's the failings of my body.
It's the constant strain of trying to figure out how to pay for meds.
It's the struggle to take meds all the day long.
It's the enduring of even more illness in side effects in the oft futile hopes for help.
It's the illness.
It's the never-ending exhaustion.
It's the loneliness.
It's the isolation.
It's the uncertainty.
It's everything.
And nothing.

So, I strove to get some things done in the yard today.  I weeded all of my beds, though most were nearly clear.  I had some more of the baby Rose of Sharons to pluck and I had the whole shade bed on the far side of the house to weed, just a few inches away from a bed that is nearly all weeds.  Thankfully, most of the weeds were ones that I could pull rather than dig.

When I finished, I napped for a couple of hours.  Most days, I nap twice, between 2-3 hours each time.  If I try to stay awake, I oft fall asleep sitting up!

After my nap, I watered and watered and watered.  Every summer, we have a mini-drought, which has clearly started.  The raised beds, the bushes, the ornamental trees, the pots, the baskets.  And I tended to the bird baths and the fountains.  Water, water everywhere.

It was good to get something done, to be outside of my body for a while.

Saturday, July 07, 2018

Another blow...

I know I am not a dentist, but I am 99.99% confident in my diagnosis.  SIGH.

Friday morning, I awoke to a call from my new neurologist. This is the second time that she's called me and the second time that she has called me to break the news that I will not be getting an MRI.  The other hospital in town also refused to do the MRI.  Without the imaging, she stated that we need to do a lumbar puncture (spinal tap).  I am not looking forward to that.

I did think to see exactly when my dear friend Becky and her brood will be in town (just two weeks from now), so I called to see if I could get it scheduled during her visit.  I doubt the stars will align for that, but I am going to beg come Monday, since the scheduler never called me back.

So, already Friday was a rather distressing day for me.  But when I went to brush my teeth—floss actually—it got worse.  I noticed a black speck on the top of one of my molars.  At first, I thought that I had missed something when I was brushing my teeth.  So, out came my electric toothbrush and I went over the tooth several times.  But the speck remained.  Then, I tried using my dental pick, thinking that perhaps it was some bit of pepper that was just plastered down hard.  Alas, know, it was a small hole actually.

Google tells me that I have a fourth cavity.
I agree.

The saliva-producing medicine has made me quite ill, so I have had to increase the dosage by 1/4 of a pill every two weeks.  After the first week of June, I finally got to two whole pills, a half dose.  I decided to take a break, in part because of the side effects and in part because I have gotten such strong pushback about trying to take the medication, basically questioning if I even needed to take it.

A fourth cavity.
Just four months after my x-rays, exam, and three other fillings.

Even though I have bewailed my despair on Facebook and tried to text with a friend about it, I really haven't gotten too close to the thought of what this means.  By that I mean, I think I would tip the scales towards leaving this world if I were to go there.

It isn't just the thought of dentures, it is the expense.  They would be out of my range if I wanted to not drain my meager retirement.  Actually, it is not just the dentures.  It is the extractions.  And it is not just the extractions.  It is the root canals.  And it is not just the root canals.  It is the crowns.  And it is not just the crowns.  It is the fillings.  By all accounts, I very well could be at the event horizon of a financial black hole visited by so very many folk with Sjögren's.

A financial black hole.
An emotional black hole.
A physical black hole.

I admit that I am not always diligent about brushing four times a day, flossing twice a day, and using the fluoride rinse twice a day.  That is my new routine.  I am also not all that diligent about putting drops in my eyes every hour or tending to my sinuses with various products every two hours or putting the topical NSAID gel on my shoulder ever four hours.  For that matter, as much as I strive to take my meds at 5:00, 6:00, 7:00, noon, 4:00, 6:00, 7:00, and midnight, I have not excelled at doing so.  Not lately.

I've let my visual rest go.
I've let my personal care go.
I've let my butter passion go.
I've let my cooking journey go.

This whole MRI thing and new shoulder arthritis thing and lung function thing has had me in a real funk, but that black speck has tripped me down a hole that is seemingly impossible from which to climb out.

I am weary and alone and medically hopeless.
With crap teeth.

Thursday, July 05, 2018

No change...

I had such disappointing news today.  I posted about on Facebook and was surprised that no one responded with consolation.  After all, despite two months of treatment, there has been absolutely no improvement in my lung function.  My function has held steady, which is something, but no improvement.  My ability to draw a breath remains at only 50% of what it should be.

I hadn't known the percentage of my dysfunction until today.  I am not sure why not or why she chose to tell me.  I am not sure why I didn't ask more questions the other times I have seen my pulmonologist.  Perhaps it is because this is just so very overwhelming.  After all, breathing is such a primal need.

All those "thumbs up" responses.
Not a single sad face.
No consolation.

It doesn't matter that my therapist tells me that most folk don't know what to say to those who are ill and/or suffering.  I still feels so absolutely and utterly alone.

It seemed to be a cosmic sucker punch when my tire low pressure warning system came on whilst I was driving out to the hospital.  I had my oil changed, a service inspection completed, and my tires rotated just yesterday.  There I sat, back in Goodyear, wanting to cry and to cut and to hold my beloved Fluffernutter.  Instead, I was waiting for a mistake to be corrected.

Instead of losing it, I very quietly asked to speak to the manager and requested that the serviceman who worked on my car have a bit of re-training.  Not checking the tire pressure after rotating the tires is a pretty basic fail.  I adore the men who work at that Goodyear and am grateful for all that they have done for me over the years.  I was annoyed at having to both drive all the way out to the shop again and sit again in one of their hard plastic chairs.

Besides, it is hard to be devastated in public.  I just wanted to go home.

I have been rather ill with the new medication.  I have been sitting here for a few hours tonight, wondering why I am trying to so hard to find a medication to help my hands.  It seems as if I am the only one that wants the shocks to cease.  SIGH.

What a crap day.
No change.

Wednesday, July 04, 2018

Hand me the shame...

I confess that I dismiss the shame of Christ on the cross.  I very much dislike it when I try to speak of my shame and I am handed the shame of Christ on the cross as a panacea for my own.  Christ was naked (not that most Christian artwork shows this), yes.  I understand that for Him, that for a man at that time, public nakedness brought shame.  But hanging naked on cross is not the same shame as being raped or having parts of your body played with by an adult who knew well what he was doing when, as a child, you did not comprehend what was happening.  As a child.  As an adult, you know well what is happening in those flashbacks and some part of that shame fills the flashbacks with a greater horror.

Don't get me wrong.  Christ Himself is the answer for shame.  Christ is the answer for the whole world.  His being naked on the cross, however, isn't the answer.  It just isn't the same.

Something I also very much dislike is the comparing of suffering.  You could say that I am doing that here, but I am not.  Suffering is suffering.  Suffering is such a personal and idiosyncratic experience.  What is horrifying to me might not be to you and vice versa.  But we each have our own horrors of the mind.  That is suffering.  And what miseries of the body fell me might be mere annoyances to you and vice versa.  But we each have our own miseries of the body.  That is suffering.

Besides, comparison of suffering moves one away from what is needed:  compassion, empathy, presence.

But still I compare shame.  And, for me, to hand me the shame of Christ on the cross when I try to speak of my shame is to hand me dismissal, disconnection, loneliness.  And, honestly, it is also to add to my shame in a sense of failure.  Failure to communicate, perhaps.  Failure of faith for certain.

Sometimes, it seems to me that answers that I am given, even as a Lutheran are really thinly veiled "let go and let God."  That is not ... biblical to me.  At least I've never found that verse.

Unless just a little while ago, every single time I had a pudendal neuralgia flare, I was not lying on my bathroom floor or in my bed, but rather I was trapped beneath the body of a man, writhing and even screaming, now, as an adult, as an object was shoved up by backside.  That is the sensation one can have with a pudendal neuralgia flare: as if something is being inserted into your rectum.  Even without a history of sexual abuse, it can be a terrible experience.  But for one who was abused in that manner, it is the trigger of all triggers, melding the pain of the present with the pain of the past in a wretchedly warped manner.

Now, understanding has helped change how I respond to what I am feeling.  I do, admittedly, fall back into the flashbacks, but most often I am able to gather the reigns of my mind and drive them to the knowledge that is most important.  I close my eyes and picture a diagram of the pudendal nerves in the human body.  I follow the branches of those nerves on the left side down to where the branch affects the rectum and I force my mind to focus on a true medical fact:  What is happening to my body, what I am feeling, is a malfunction of my pudendal nerve, following down from along my spine, though my pelvis, and branching throughout my pelvic region; it is not what happened in the past.

The power that is most effective against flashbacks is the ability to remain in the present so that you can concentrate on what is actually happening rather than what has happened before.  The ground I have gained in the battle of enduring pudendal neuralgia flares hasn't come because I let go and let God.  No, that gain came through medical knowledge I have gathered about my pudendal nerve allows me to remain in the present.  Now, that present stinks and I oft want to die as much as I do when I am lost in a flashback, but I savor the victory of remaining present.

But even as I do the shame of those flashbacks comes creeping back, just as it is beginning to flood my mind as I write this.  The dirty, secret actions in that place where my body was violated and, sometimes, would violate itself with responses too overwhelmingly laced with shame that even to dare touch the thought is to flirt with a desire the die that is just as strong as the shame.

Sexual abuse shame is a shame that is complex, I believe.  There is the shame of the body and the shame of the mind and the shame of betrayal and the shame of behavior and the shame of society.  I could try to explain what I mean by each of them, but I would be falling down my own rabbit hole and tonight is not the time or place to do so.

I just wanted to admit that, after a fashion, I dismiss the shame of Christ on the cross.  Instead of that, when I speak of my shame, perhaps, hand me the shame of the prodigal son.  You might not understand, but a part of me feels responsible.  Hand me the shame of Christ on the cross and you are handing me an example of nakedness that does not match my own and only serves to make me feel more wretched for having spoken.   Hand me the shame of the prodigal son and you are essentially handing me the hope of forgiveness.

Tuesday, July 03, 2018

The trauma response...

The trauma response in our brain is to either fight, flight, or freeze.  For me, my life has been defined by and bound by the latter:  Shut up.  Be still. Wait until it is over.  I snap into that ... easily.  Too easily.

It is not a response that some predators like.  Or, rather, I think that I should say that my disassociation that accompanies the trauma response is not what they want.  I wonder what I look like.  However I do, it used to enrage my last boss when she was filleting me for this, that, and the other.

Instead of leaving (and suing), I shut up, was still, and waited until it was over.  Even though I was an adult and had learned some things about abuse.  The same is with others ... those who abused my body.  At 44, I was still unable to do anything but shut up, be still, and wait until it is over. 

I know that that what I learned at a young age.  I know that it is a normal trauma response.  I know that my brain is wired differently.  And yet I feel immense guilt and shame for my response, for what seems to me to be ... participation in the abuse of my body, in the sex (even though I know it should be called rape).

How could Jesus forgive a life of that?

The past three therapy sessions, we have used the article that I shared here about Complex PTSD as a framework, a tool that is perfect for me.  The past two sessions have been about how I struggle to trust God.  I am not sure I do much at all.  That grieves me.  And it terrifies me.

I have been trying to figure what it is that I believe.

As I have written before, I believe in the power of prayer.  I believe that God desires us to pray.  I believe that God yearns for us to pour out our hearts to Him.  I believe that prayer comforts.  I believe that prayer heals.  I believe that it matters not so much what we say, because the Holy Spirit takes us to Jesus and Jesus takes us to the Father.  The Holy Spirit understands our groanings and speaks them.  We need not worry about our words when the very Living Word of God brings our cries to the Father, who collects our tears.

To me, the beauty ... the awe really ... of the Psalter is that it shows so clearly that we, as human beings, are known to our Creator.  He understands our doubts and fears and joys and exultations and wonders and yearnings and questions.  They are all there.  In the collections of prayers He gave to us.

Which brings me to the other certainty I have:  I believe in the efficacy of the Word of God.  It is powerful, performative, and perfect.  Hearing it changes you.  The Word of God sustains and heals and feeds and encourages.  Having it in your mouth and on your lips, in your ears, and in your eyes is what God desires for us because the Word of God is and has done all that God is and has done.  It will not return void.

I could write forever about the Word of God, about the wonder of it and its perfection.  The latter is why I love (and have been so very blessed by) Michael Card's commentaries on the gospels.  He, too, believes in the perfection of the Word of God (and the Living Word).  They are an amazing celebration of Jesus ... not a exploration of how Christians should live.

Good stuff there.

I'd rather hide in the Psalter and in those commentaries than think about the fact that I struggle with trusting God.  What does that mean for me?

It is a tad challenging when my therapist talks about faith, and the Bible, and theology.  She believes in God, but I think she is lapsed in whatever denomination she might be.  I suspect it was either Catholic or Lutheran.  In any case, she made a suggestion for something for me to consider:

If God is our Creator, then He created that trauma response in our brains to preserve us.  So, therefore, there would be no shame in freezing, no shame and no guilt.  Certainly Jesus would have forgiveness for that response ... again and again and again.

I spent the week thinking about what she said, wondering if her thought could become my thought.  I have yearned to speak to a pastor about her thought, to work through what that could mean for me.

We talked more about it today, along with trust in general.

1. Deep Fear Of Trust
People who endure ongoing abuse, particularly from significant people in their lives, develop an intense and understandable fear of trusting people. If the abuse was parents or caregivers, this intensifies. Ongoing trauma wires the brain for fear and distrust. It becomes the way the brain copes with any further potential abuse. Complex trauma survivors often find trusting people very difficult, and it takes little for any trust built to be destroyed. The brain senses issues and this overwhelms the already severely-traumatized brain. This fear of trust is extremely impactful on a survivor’s life. Trust can be learned with support and an understanding of trusting people slowly and carefully.

After setting aside her idea about the trauma response, we talked briefly about how she would like for me to come up with three ways that I view trust in others.  What a tough assignment!  I could think of one:

Don't tell me that you will call or visit or write and then do not.  If your plans change, call me or send a text.  I understand that.  But if you blow me off—for that is how I feel about it—then I cannot help but think that I matter not to you.

I am not sure what she means, but when I think about trust, that came to mind first as an example when the trust I built is threatened or even destroyed.  "The brain senses issues and this overwhelms the already severely-traumatized brain."  Oh, man! Is that ever a sentence I understand. SIGH.

Monday, July 02, 2018

Like every other day...

The fireworks have been blasting for over a week now, here in Fort Wayne.  And we are still two days away from the 4th.  Not that the holiday will end the madness.  For me, it is that.  Madness.

Both Amos and I do not do well with fireworks.  Each of us are felled by our PTSD, made insensible by the trigger.  It is a comfort knowing that we are not the only ones felled by PTSD at this time of year, albeit a small one.

When I am on the phone or with someone, it is easier to shove the fear below the surface.  But when it is just Amos and I, each pop, rattle, and BOOM makes me jump and long to crawl into the recesses of my closet.  I just don't understand why my neighbors like having such deafening and overwhelming and frightful noises in their backyards.  But, boy oh boy do they ever like them.  SIGH.

The first of the year is also difficult for the same reason.

It is hard for me to this of this as a holiday.  I mean, holiday have little meaning for me since I am home all the time, home and not working.  Home and alone.  But the celebrations drive me to despair as the fireworks start even as dusk is still falling until after midnight.  Hours and hours of torture for me.

One of the questions I dread are about holidays.  What are you doing for ____________?  I don't have an answer because I am usually not going anything any different from any other day.  I don't have special plans for meals.  I don't have plans to go out.  I don't have visitors coming.  The day of the holiday will be like every other day of my life.

Unless it is one with fireworks, where the flashes of light bring unwanted flashes of memory to my mind ... and body.