Thursday, August 31, 2017

I just don't know...

I love having Amos with me whilst going to therapy.  Today, because of a question that my therapist asked, I was able to pull him into my lap and hold onto him whilst answering her.  If it wouldn't drive Amos nuts, I would give him a bath every Wednesday night so that I could have lavender aroma therapy whilst I am having therapy.

But there is a cost to having Amos with me.  And it is a cost I am increasingly finding it difficult to pay.  You see, everyone and their dog (okay, just everyone in this case) sticks his or her hand out in Amos' face before asking if he/she can pet him.  For Amos' part, he handled the three intrusions today quite well, his best yet.  But I didn't.

One was another therapist.  Personally, I think she should have known not to get so close to a perfect stranger.  I was sitting in a chair with Amos behind me and so she bent over me to get to him.  I could smell her perfume or shampoo or whatever and I wanted to shove her away.  It was a rough beginning to my visit, especially since we were approached on the way into the building.

But on the way out, the doors to the rather minuscule elevator—an elevator that I have to screw up my courage just to enter twice each appointment—opened to a veritable crowd.  There were three adults and four children all crammed in the space the width of a regular door.  I wanted to slam the door back shut!  Only I couldn't.  All I could do is snake my way through all those folk.

Amos wasn't all that comfortable, and two of the children tried to pet him.  Now, he is getting better if someone sticks a hand in front of his face, but Amos does NOT want to be petted.  Not even by me.  I was worried he would snip at one of the children and was trying to get away from them by darting around a corner, but when you are trembling from head to toe, it is difficult to dart.  SIGH.

The whole situation made me think that I should start leaving Amos at home.  And, to be honest, to leave myself at home.  It is getting harder and harder and harder to leave.  I wish I could be the Bubble Boy, surrounded by plastic.  However, if you look into his life, it was rather heartbreaking.  He shouldn't even be a half-hearted wish.  I just want a large, large cushion around me.

I am weary of trying to hide how afraid I feel when I am out and about.  SIGH.

Speaking of that, I watched the first episode of Mike Rowe's new show "Returning the Favor."  The first episode is about a veteran who spends his life helping combat veterans deal with PTSD and TBI.  It was so ... comforting to watch.  I mean, it totally STINKS that there is so little help for veterans with PTSD.  It is hard for me to live with it, but it must be unfathomably difficult for them.  They have so very much going on in their worlds that to add PTSD on top of it ... I cannot imagine.

In the episode, we learn that Alabama has the highest rate of veteran suicides—28 a day—and there is not a single program to help veterans with PTSD and TBI reintegrate into society.  That is abdominal.  Truly.

It was weird, watching the show, for me to see folk who had suffered so much.  I know that comparing gets you nowhere, but I did.  Compare.

A couple of hours before my appointment, I had a severe flare of pudendal neuralgia.  There I was screaming PLEASE STOP.  STOP DOING THIS TO ME.  PLEASE STOP.  Usually, after things move along, it stops.  But, as it has a few times, the pain went on and on and on.  I wanted to die.  I wanted to call my friend Mary and have her speak Gospel to me.  I wanted the sun to go Super Nova.

As the time dragged on and on and one, I wondered if it was going to end before I had to leave for my appointment.  I couldn't fathom driving there, much less concentrating on talking.  A part of me was disappointment.  A part of me was relieved.

Anyone who knows me will fall on the floor laughing, but I oft find myself wishing I could just stop talking.  Stop speaking.  Just stop.  SIGH.

About forty-five minutes before I had to leave, the pain ebbed.  As before, on that terrible terrible day, I was faced with the aftermath of the pudendal neuralgia flare.  A different kind of pain.  A soreness.  That feeling of sitting on a stone.

I had read in the support group about using ice packs, so I worked up the courage to bring icepacks with me.  I sat on them and they did help, but I was too chicken to try and adjust them.  I hurt on the left side, even though there is not so much a side.  There is definitely a left to the pain.  I know the pudendal nerve goes through the SI joint, so I am trying to work out how to sit on ice packs ... or lean on them ... in such a way that I could have relief.

I did adjust them once I got home and think I might have gotten a bit more relief.  Tomorrow I see the GP and I thought I would ask her to help me.  Is that a GP thing??  I was thinking she could point out to me where my SI joint is.

That the pain ended before my appointment was an incredible relief.  That I had such a severe flare on my increased dose of baclofen drives me to despair.  Life with chronic pain ... I just don't know how to live it.

Tuesday, August 29, 2017

The worst...

I grew up in Houston and lived through flooding, though I do not remember much of my past.  It is hard to follow the coverage of Harvey and not to think about my life there.

My sister set me this tonight.  It is our childhood home.  She, too, is wondering if it is underwater.  So much of our life there probably is.  I cannot exactly say why it is that I, too, do not want it to drown.  It is not as if life in this home was perfect.

It is strange to look at this photo.  Thanks to Google, I can see what I do not have any photos of myself.  My father's childhood photos went to my sister after his death ... eventually.  My mother has never shared any of the ones she has.  I have a few from my paternal grandmother (when my maternal grandmother died, all her photos went to my mother) and some that my aunt sent me years and years and years ago.  I was glad that my sister sent it.

Thanks Google.

I do know that I feel proud to be a Texan, watching the coverage.  You see folk helping each other over and over and over again.  That's because, in Texas, everyone is your neighbor.  Even strangers.  Texans?  We pull ourselves up by our bootstraps.  [Do you know the meaning of bootstrap as a verb?] And when our neighbors cannot, we help them pull up their bootstraps.

I do miss Texas!

My sister remembers the flooding.  She remembers the trauma and the fear of it.  I don't.  I wanted to ask her if this was hard for her, but she was driving home from work and then fixing dinner for her boys.  She is so incredibly crazy busy that she hasn't really understood the scale of what was happening until today.

I wanted to talk with her about therapy, about some of the small remarks that my therapist has said.  But it wasn't the time.

In the sexual abuse support group, there was a heart-wrenching post by a woman who said that she had kept silent about the abuse she suffered for forty years, but is speaking up because her abuser is hurting her children.  He is her father.

I was DUMBFOUNDED that she would ever let her father around her children, much less alone with them.  When I mentioned it to my therapist, she said, before my words died away, "You cannot believe the role denial plays in abuse, chiefly as a coping mechanism.

I opened my mouth to protest "But" and the word (and all the words I planned after it) died.  For one, I learned from The Courage to Heal that any coping mechanism that helps you to survive, to come out alive, is a good coping mechanism.  It is good in that it helped you to survive.  Now that you are on the way to healing, the goal is to find coping mechanisms that serve you better.

So, I couldn't disagree with her denial.  Not at all.  And, whilst I started to say I would never live in such denial, I have.  I did.  I do.  There are somethings that, for me, are better not to have ever happened.

I ache for her children.  I want to think that it is not so much a failing on her part to protect them, because she is clearly still trying to protect herself.  And she needs to protect herself as she begins the very arduous journey to heal.  Yes, she also has to protect her children and part of her post was about that.  How brave of her to be so vulnerable to ask for help from a community that she could not yet know would understand.  And not judge.

I do like how, in there, there is this constant refrain of "find yourself a good therapist."  There is so much support and empathy and advice, but no one tries to take on the role of the expert.  In the medical support groups, often you find folk who are.  That is annoying and wrong.  Actually, it is most dangerous.

In the medical support groups, I often see the one-up-you behavior.  You know, my misery is worse than yours.  I am not interested in that.  But, in the sexual abuse support group, I have not really seen that.  Maybe it is because all the stories are horrible, no matter the scale.  No abuse is ever worse because it is always the worst it could be.


Monday, August 28, 2017

36 tomatoes...

Today was T-Day.

The tomatoes in the metal pan were finally ripe (though not in this photo taken a few days ago).

I did all the prep first, which really does make the cooking easier for me.  However, this photo is missing the bay leaves.  The last prep photo was missing the basil paste.  Perhaps the next batch I'll get all the ingredients lined up???

This is the stage where you cook the sauce covered for 10 minutes "so the tomatoes will render more of their juice."  I am not sure what that means, given that the tomatoes are grated in a food processor.  

Speaking of that, someone asked me if I peel the tomatoes first.  I replied that I grate them whole in a processor.  So, then she asked me if I take the seeds out first.  I sort of wanted to scream WHOLE MEANS WHOLE.  But I did not ... especially since I was typing.

It really bothers me when folk don't read what I have written.  I understand that it is now socially acceptable to not pay attention, but it is not socially acceptable to me.  For example, I carefully wrote a post about what the integrative medicine specialist has me trying for my severe dry throat.  I was careful to explain why trying the N-acetyl glucosamine and emphasize how there is a distinct difference between a dry throat and a dry mouth.  And I explained that I shared the post because there is so very little written and researched about dry throat.  It is as if you say "dry throat" (or type it) and everyone (and every search engine) converts your words to "dry mouth."

With the insane dryness of Sjögren's Syndrome, there are so many products and medications for dry skin, dry eyes, and dry mouth.  There is practically nothing out there for dry throat.  It is even worse when you have to explain over and over and over again that it is a dry throat, not a dry mouth.  And it is not a saliva problem (cue the suggestion to just take Evoxac and it will solve all your problems).  SIGH.

Anyway, the point of mentioning what stage that was is that, with this recipe, the first three stages (prep, slow onion cook, and 10-minute cook) affords me the opportunity to wash all my dishes before I start the hour-long-simmer stage.  I prep and then rest.  Breeze through the onions and the 10-minute thing, whilst cleaning my dishes, and then mostly rest in the next (almost final) stage of hour-long simmering.

This is the sauce after that hour is over.  I said mostly because, for whatever reason, I have found that I need to scrape the bottom every ten minutes or so during that simmering.  It is like a layer of tomato paste forms and I have to mix it back into the sauce.  I wonder if it is the roma tomatoes or if it is the flour in the recipe or if it is because I have not a clue about working with tomatoes (ICK).

This is my end result.  Thirty-six tomatoes and nearly three hours later, I have three pint jars of sauce for my freezer.

This and a whole lot of exhaustion.

Sunday, August 27, 2017

An inconvenient flare...

[No matter what, I am finishing this post that I started 11 days ago ... even if I don't really say anything.  SIGH.]

I have never had a pudendal flare around another person.  I mean, I had one during my birthday celebration, but it was in the wee hours of the mending and everyone else was asleep.  I wanted to wake someone up, but I didn't.

I had one, yesterday, during my therapy appointment.
What timing!
I struggled with deep shame.

Because I have learned how common the main symptoms I have are, I feel less reluctant to describe them.  Less ... well, I don't have a word.  Just less.  So I will say that it was weird to be with someone whilst it felt like someone was shoving something up inside my backside.  To have that very, very, very specific pressure and pain in my rectum, as I think I have shared, is near impossible for me.  It takes me right back to when I was a little girl and a despicable man shoved things inside of me because a part of him wouldn't fit.  Or at least that's the reason I came up with when I look back on the matter.

When I first read the symptom, when I first read that what I was feeling was a MEDICAL symptom, I was so relieved that I about perished.  I mean, I barely breathed or moved or existed with the enormity of the relief.  You see, I knew something was wrong, but I kept being told it was scar tissue from when I was young and there was nothing to be done.  I saw FOUR colorectal specialists over a period of several years and had many, many internal exams, three under sedation, only to be told the same thing.  Looking back on it, I think that they saw my history and just stopped thinking.  Period.


Pudendal Neuralgia is not truly well-known, but it is not actually rare.  Trigeminal Neuralgia is known as the Suicide Illness, but I think that the Pudendal Neuralgia community would also claim that title.  For many, many, many sufferers of Pudendal Neuralgia commit suicide in search of relief.

The pudendal nerve has three branches within the pelvis.  Clearly, the one that flares for me is the one that is near the anus.  However, as I wrote (or maybe I think I wrote but forgot to write), it recently occurred to me that the absolutely unbearable pain I have with pelvic exams, something that is newish for me, is probably the pudendal nerve.  I thought this because I sometimes have vaginal numbness and tingling.  I have actually never told anyone that (I think) because I like to pretend it doesn't happen.  I like to pretend it doesn't happen because I very much don't like to think about that part of my body.  But there is a branch of the pundendal nerve that feeds that area.

I have read of searing, burning, stinging, relentless  pain by some folk with pudendal neuralgia.  What I think must be equally devastating is that some have repeated, if not unending, arousal from the flares in their pudendal nerves.  For men, this must be terrible given that that happening is not something easily hidden.  There are those who cannot sit at all, who go from doctor to doctor to doctor, from surgeon to surgeon to surgeon, desperate for relief.  Pudendal Neuralgia can also cause bladder issues, including great pain and something called interstitial cystitis.

In short, pudendial neuralgia makes life miserable and oft unlivable.

For me, for the most part, what happens when I get a flare is that it feels as if someone is violently and relentlessly shoving something up into my rectum.  Every part of me screams MAKE IT STOP.  PLEASE STOP.  MAKE IT STOP.  It does, eventually, but with every bad flare, I cannot see my way past the next second before me and often want to die.

I say bad flare because I discovered that the baclofen that I started taking for the spasticity in the back of my legs that I then realized was helping the Trigeminal Neuralgia also helps the Pudendal Neuralgia.  For both conditions, the bacolfen blunts the flares, makes them more bearable.  This is especially helpful with the Pudendal Neuralgia, because I am having flares nearly every day now.

I dislike thinking about it, but it appears I made things tremendously worse for me when I worked on the porches.  Hours and hours sitting on my backside has left me with an extremely bothered pudendal nerve.

I now have to sit on a special cushion, unless I want to sit in constant pain.  I read that patients often describe it as if they are sitting on a stone or a rock.  I think that is an excellent description.  The pain was so bad that it hurt to walk and to move, a soreness as if I had broken my tailbone again as I did in graduate school.  Slowly, over time, sitting on the cushion has made that soreness dissipate, but I cannot sit without the cushion for long without that stone pain starting up again.  And when it starts, boy does it linger.

Sometimes the shoving-something-roughly-and-relentlessly-up-my-backside pain is muted to just a gentle whisper.  Or should I say whimper?  For whenever it happens, I still find myself pleading for it to stop.  Even the slightly echo of that pain takes me right back to that terrible place of my childhood.  But I can say that, after the worst flare ever in May, the steady increase of my dose of baclofen has muted every flare since.  Some are still bad, but I can still bear them without fighting this rather intense desire to die, to ensure that I never have to experience them again.

But I do find myself in this existence where I do not want to see anyone or much talk to anyone because I find myself back in that darkness several times a day.  It is not something I can easily explain.  And it is not a place where any of my friends have convinced me that they want to sit with me in sackcloth and ashes as I endure.

When I tried counseling again in September 2015, with the free counselor I am now calling The Crazy Lady (because my therapist thinks she's NUTS as I have slowly told her the things she said that distressed me so), I tried because I just couldn't bear the pain and the memories. I had no coping mechanism to get through the flares.  Then, they were about four or five times a month, not four or five times a day as they are now.  We never got anywhere with helping me cope.  Mostly, she didn't go there with me.  I learned why the last time I saw her: she thought the pain was all in my head.

I was incensed  when she said that.  NO BLOODY WAY!  I rejected her words and though there was no reason for me to go back.  I didn't.  But her words still hurt me even now when I know that she is 100% wrong.  SIGH.

So, back to my appointment.  Instead of using that rather inconvenient flare to address my deep longing for help enduring them, I opened my mouth and rather frantically spoke for the entire session, trying to fill every breath of mine with words that were anything but MAKE IT STOP.  PLEASE STOP.  MAKE IT STOP.  I was screaming inside the entire time I spoke to her.  SIGH.

This past Thursday, I wanted to talk about what happened.  I tried, for about two seconds ... okay ... for about as long as it took me to say that I wanted to talk about what happened.  But, then, every word out of my mouth after that was not about what happened.  I don't know why.  SIGH.

If I were to guess, I think that it is because just as every part of my being is screaming when it happens, every part of my being is also flooded with shame.  And I don't know what to do with that.  I  mean, Dr. Brené Brown's research on shame is helping me deal better with new experiences with shame.  However, it is not helping me with the old.  In part, I think that is the bigger picture thinking that you must do to practice shame resilience is easier when that shame isn't about sexual abuse.  SIGH.

I think I would like to try again to talk with my therapist about what happened.

Wednesday, August 23, 2017

Missed days...

Darn it!  I've spent an entire week trying to write a post and, in the process, lost that week to my online rememberer.  SIGH.

I had a full day today, so I think I will start there.

Wait, I'm going to go back to yesterday.  Or the wee hours of this morning.  I did some midnight gardening (that was really at 1:00 AM).  I tackled the weeping cherry, which is inexorably taking over my yard!  I trimmed it up, worked on its width a bit, and weeded beneath it.  The latter is a task I have not done for two years, at least.  Probably three.

I watered, which turned out to be sort of a personal joke between God and I, because just a few hours later, we had one of those torrential downpours!  However, that was good, because I cannot soak my azaleas the way that God can.  And, being new bushes, I have been a bit lackadaisical about keeping them well-watered until they are established.  I noted this afternoon that the leaves were much, much perkier after the downpour.

I watered the raised beds, especially my non-producing cucumbers.  Well, my six plants have grown two small cucumbers and these three duds.  SIGH.  Last year I had such a bumper crop even though the plants were crammed into that tiny pot.  Now, spread out, they are totally unhappy.  SIGH.  SIGH.  SIGH.

A few days ago, I picked my very first summer squash!!!!  Another one is growing, but all the rest of the blossoms have been male ones, so I am a tad worried that FIVE squash plants will only produce two fruit for me.  That is a terrible ratio!  However, last summer, all I did was kill squash plants, so I am already ahead at this point.  I did, three weeks ago, plant the last of my summer squash seeds.  I have five more plants growing.  They have blossom buds, but they are only about twelve inches tall, so I am not sure I left myself enough time for the plants to mature.  Since I cannot use the seeds again next year, it didn't cost me anything to try and grow them.

Part of my midnight gardening was picking up the fallen tomatoes and adding them to my new stash. Now, this is important because ...

... this was my stash just a few days ago.   Well, August 15th.  Somehow, I already had enough for another half batch of the tomato sauce after, seemingly, just having made the first one.

I did all my prep first and took a photo (and a rest) before starting.  Only, in this photo you can see that I forgot to get out the basil paste.  I had to hastily grab it from the refrigerator when it came to that point in the recipe.  The first six servings, I saved individually, but these six servings, I saved in batches of two in pint mason jars.

The key to that photo above is that I already have double the tomatoes since the rain storm dropped a whole lot more of them.  However, I forgot to take a photo to show you the new ones just a day later  and if I get up and take one now, I'll probably get distracted and not finish this point.


So, back to last night's gardening that was after a week ago's cooking of tomato sauce.  One of the things that I SWORE I was going to do, when I was watering, is to put up some of the herbs I am growing.  That meant that, today, I would take down the German dill and cilantro that is dry, strip those leaves, and get them into jars, and then harvest, bundle, and hang the next set of herbs.

This is my German dill.  I really, really, really like this stuff, so I am looking forward to cooking with it even dried.  The jar smells so bloody good!!  Where is the cilantro?  Well, let me first say that I forgot to take a photo of the first herb I dried this summer:  rosemary.  I ended up taking bags of it to most of my doctors since I have two rosemary pots and at least one of them will winter.  I am quite good at wintering Rosemary, but I have learned that the bushes only like being in pots for so many years before wanting ground and the ground in Indiana will not keep rosemary alive during the winter.  I also had made rosemary butter in the spring, which is why I dried some.  I was planning on keeping it, but then thought about how much care I get from my medical team ... and my own availability of rosemary.  I do hope to dry some for my friends when I do a harvest before bringing the pots inside to winter.

So, back to the cilantro.  Well, when I took it down, it didn't smell.  At all.  I was really surprised.  Then, I tasted it.  There was basically no taste.  I mean, I am actually not a cilantro fan, so I am rather sensitive to its taste.  This had none.  I do not know if there is something special you have to do with cilantro to dry it or if what I grew was only good fresh.  But I ended up tossing the three bundles that I had dried.  SIGH.

So, today, I did get the German dill in a jar and I got three bundles of sage, four of thyme, and three of oregano harvested, bundled, and hung.  Of course, I fainted three times whilst hanging them.  [I sure do need me a helper for things that need doing but are a sure-fire syncope episode.]

The oregano is especially exciting to me because last year I didn't bother growing it.  That is because the first two years of herb growing, the oregano I bought grew along the ground and was a bear to harvest and then strip after it dried. To me, the yield wasn't worth the hassle.  This is a different type and I am FRUSTRATED that I do not remember where I bought it.  I am assuming it was from Menard's, because Lowe's is where I got the frustrating type.  However, you know where assumptions get you.  In any case, I dearly wish that I had harvested it earlier so that I could get more from the single plant I bought.  I was thinking that oregano would be good to also freeze in oil.

Skipping back to last night, before the gardening, I held a surgery clinic for Amos' babies.  He was whimpering and whining the entire time I worked on three of his babies.  Sadly, all three were damaged again before the evening had grown very long.  However, I had forgotten just how much Amos ADORES his Elf Baby.  This was his post-surgery-clinic nap with Elf Baby, who, incidentally, also went upstairs with us to bed.

Maybe surgery clinic was the night before.

ARGH!  THAT is why I hate missing writing about my days, even if my entries disappoint me as a writer most days now.

Well, sometime in the past few days, I fried my first fried food.  I picked zucchini.  I wanted to use flour, milk, eggs, and breadcrumbs, as I had seen all four used in cooking videos, but I couldn't find the order.  I only found the flour-egg-breadcrumb order, so I went with that.  However, as you might guess, I also went with panko breadcrumbs.

These are actually my second batch a day later, because I forgot to document my official first fried food, but they look the same.  I was rather disappointed in how I found them to taste and was weighing switching to regular breadcrumbs in the second attempt (I had two zucchinis), but decided to stay the course.

I have been thinking muchly and deeply on the matter.  Is it that the taste is just not wowing me because I do not, as a rule, eat fried foods?  I rarely have them when going out and rarely go out now that I am on a fixed income.   Or is it that I did not properly season either the flour or the breadcrumbs??  I honestly do not know.

The zucchini did not taste bad.  It actually melted in my mouth (the inside part) and the outside was impressively crunchy.  It just didn't wow me.

Last Friday, I think (because of how many I have left), I made another batch of my beloved baked oatmeal.  This is key because this is the second time that I got to make them all at once (or, darn it, was it the third?).  I think it was the second because the first time I was so excited that I messed up counting on the oatmeal, I used the wrong milk, and I forgot the blueberries.  The end result was pretty awful, but I ate all 18 of them anyway because I LOVE baked oatmeal.

They were really, really, really dense.
Brick dense.
Baked hockey pucks.

These turned out light and soft and AMAZING.  I had my seventh one (I think) this morning and for the seventh day in a row, I have marveled at how tasty they are.  I've been eating them for months and months and months and their AWESOMENESS never grows old.  Of course, it is especially notable after consuming the previous batch.

Back to today.  I wanted to eat my summer squash since it had already been in the refrigerator for a few days, so I planned a special meal.  That meant thawing out my second-to-last steak and digging for carrots.  I actually found one of respectable length!  [My dear friend Mary thinks there are two others that are also respectable.]  Now, the problem is that I STINK at being a carrot murderer, so I did not thin these.

These are the ones that I harvested several days ago, so I had a very strong lesson on the need to thin driven home, but I still did not manage to thin my second crop of carrots until last night.  I doubt that I was too late on the thinning, but I am now doubting that I will get any carrots from the second batch.  We are having a whole lot of unseasonable weather and I suspect I will not have the longer growing season that I was counting on when I planted the rest of the seeds.

Next year, I think I will plant cucumber plants all along the fence of the original bed and then carrots all along in front of them because I LOVE carrots.

Here is my meal all prepped.  I have decided that, wherever possible, I need to cook by prepping first because it affords me the opportunity to rest a bit before I start cooking.  That cuts the length of the cooking process into more manageable segments for me.  And standing is one of the most difficult things for me to do.  [If there is a way to cook in my kitchen whilst sitting, I haven't found it yet.]

The steak is seasoned and oiled (I learned that if I oil the steak instead of the pan, I get far, far less smoke).  I sliced and then made up the marinade for the summer squash.  It is my most favorite way of cooking summer squash, grilled with the butter/stone ground mustard/ginger paste marinade.  Mmmmm!  The carrots are drizzled with olive oil and seasoned with smoked sea salt, peppercorn medley, sage, and thyme.

I wanted to use one of my last steaks (steak is not going to be in my austere budget) because this is the first time I get to eat vegetables that I have grown.  I really am disappointed that I failed at thinning carrots and mostly failed at my summer squash because I ADORE both of those.  And, based on tonight's meal, picking veggies just before (or there abouts) before cooking them makes them BLOODY FANTASTIC.

Everything turned out VERY tasty.

Yes, I ate by candlelight again!

I was so very excited about both meeting my goal (the herbs) and, for the very FIRST time, cooking so that all of my dishes were ready at the same time that I decided to go for broke in the energy department and test my working theory on just why it is that I haven't been all that successful with my fires out in my haven.

Since I am the Fire Queen when it comes to laying them indoors, my poor performance out of doors has bothered me.  I decided it was because I couldn't use my Tried-And-True method without either the andirons I have inside or a rack.  I actually found a rack that would fit my fire pit, but it is $29.95, so I have put off buying it.  Then, I wondered if I could use some of my old bricks as makeshift andirons (okay, not andirons but the same function as far as I am concerned).

I used four bricks to create two long supports for my logs.  In the middle, I made my kindling pile that is comprised of paper, paperboard, bark bits, a fire starter, and some bits of wood (this summer, I've been using paint sticks since I have a substantial collection of them).  I put my single piece of kindling wood (Firewood Man makes these skinny, bare pieces of wood for me) just above the fire starter so it can light and then light the rest of my wood.  I then placed the six logs, two by two by two, in alternating directions, three stacks high.  I lit the kindling and VOILÁ!  I had my usual ROARING fire in just about two minutes.


I had put six more logs in my log carrier to use to add to my fire as it got going.  The fire was so well done that I was able to watch a movie (I'll give you one guess which one) and two episodes of "The Great British Bake Off."  I still had one log about half left, but I needed to get working on going to bed (which I am not making much progress since I am writing this), so I put on the screen cover and went inside.

Then, I went back outside to take a soothing video to post for my Facebook Peeps (I've not been able to figure out how to post my videos on here).  As I was taking the video, the crickets were chirping and a passing train began to whistle.  The fire was gently crackling.  And the cool breeze was blowing through my hair.  I could have stayed out there until the final ember cooled my have is so darned PEACEFUL.

I know that it is going to take me a long, long, long time to pay myself back for the overages of that space, but it absolutely was worth it.  And, personally, I think that God gave me a summer half filled with cool days because He knew I'd go nuts waiting an entire summer to use the space again!  Okay, perhaps not really, but I have been MIGHTILY blessed.

So, here I am, with a raging headache, as is par for the course these days as I try to get used to my increased dose of bacolfen.  That drug is a miracle worker with regard to making my want-to-kill-myself pain more manageable.  So, I think that the adjustment of each dose increase has been worth it.  But it is hard to remember that when I am dealing with the constant dizziness and the raging headaches.

I am also putting off sleeping, as I have for several days now, because I am afraid.  I went for a while without remembering my dreams.  It was heavenly in the relief and in the fact that I truly believe it was, in part, because some of my FB peeps were praying about my dreams.  But then I woke up screaming again and it was the absolute worst dream that I have ever had.  And I don't want to have it again.

I am afraid to have it again.

Wednesday, August 16, 2017

Another blanket...

I recently finished another weighted blanket.  I wanted one for my bed, since carrying them up and down the stairs is difficult for me.  I bought the fabric one month and the weighted pellets another month.  Then, I started sewing, still not being a seamstress and basically only able to sew in a straight line.  This was the largest one I've ever attempted.  Next, I ran out of pellets and had to wait until another budget cycle to buy them.  Finally, I finished it.

The problem with the fabric is that I let myself be hurried in its purchase, my neighbor anxious to leave since she didn't care about fabric and the woman working at the fabric counter rushing me so she could take her break.  I wish I wasn't such a pushover.  SIGH.  Anyway, I ended up with too much fabric.

Way too much.

When I went to cut it off, I decided that I would cut the fabric in half.  [Have I mentioned that I really, really, really bought too much fabric?]  I thought that would be sufficient, because the blanket would be from my chest to my toes.  I thought it would be a waste of the fabric purchase if I had a smaller piece left.  Though, now that I have worked it with, I could have cut it with a quarter left and had what I needed, had the covered I needed.  Though, I am jumping ahead.

This is the fabric I chose, because I wanted to something that would go with my bedding.  [You know, being an interior designer's daughter and all!]  It is Waverly, as is all the fabric I've purchased for weighted blankets, a light weight upholstery fabric.

The reason that I had to buy more pellets, the reason that I had to wait even longer for the blanket, was that if you buy heavier pellets and you still use the same quantity per pocket, you will run out of pellets.  They sell by weight.  I should have thought about that when I bought a larger quantity and yet it came in the same sized box.  But I don't realize such things anymore.  I get confused ... especially by anything that involves math!

Sewing the blanket was terribly difficult, which I now realize because it was so much heavier!  I struggled to move the fabric along as I was sewing the seams for the pockets.  I haven't actually weighed the blanket, but I know that it is twice as heavy as the one Becky made for me and I have been sleeping with of late.  Speaking of weight, I practically need a crane to move the new blanket!!

Here is my finished blanket.  I know there is a formula for weighted blankets ... wait, I will go look.  Okay, so my body weight means my blanket should be between 12 and 25 pounds.  Now, I will trudge upstairs and weigh the blanket.  Oh!  It is only 19.6 pounds!  If I had made it as long as I wanted, where I could have my shoulders and feet covered at the same time, I bet I would have hit that weight!  Maybe.

As it is, I ripped off a nail two nights ago pulling the blanket up over my shoulders.  OUCH.  Seriously, I could use a crane.  But the up side is that I have been sleeping more and better since I started using this crushing weight atop me.  Yay!  Yay!  Yay!

I do not move around as much, which might help.  I don't know about that.  But what I do feel the most is not so much the weight but a sense of safety.  SAFETY!!  I am not that good at describing it other than to say that after the first night I IMMEDIATELY wanted to figure out how to make myself a bed size weight blanket so that no matter how I rolled around in the bed, I'd be smushed.  After all, I could just cut apart this blanket, spill out the weighted pellets, and start again.

[Okay, so I am not a graphic designer, so please ignore my childish attempt to make an example.]

My idea was to make the blanket in nine parts.  The outside edges I would make like I do the ones now, but the inside edges I would simply close with a seam and leave the some fabric hanging out so that I can use it to sew all the parts together.  Then, to cover that, I would just sew on a cover.  That part wouldn't have to be weighted.  And I think the two seams of the cover and the seam of joining the pieces would mean that the joints would be strong enough to bear being tugged on by the weight of the pieces moving around.

It is something that I am thinking about, although I think that the larger you try to make a weighted blanket, the more you need a second person to help move the fabric through the machine once you've make a fair amount of the pockets.

The blanket above is 140 pockets.  I think that is nearly as much as I could make by myself.  The side pieces would not be hard to make, but I am not sure piecing them together is something I could do without help.  Like I said, all I know how to do is sew straight lines, simple stitches.  And I can sometimes wind a bobbin and sometimes thread a needle.  SIGH.

In the meantime, I decided to use half of the remaining fabric to make a medium weighted blanket for my new therapist's office.  I had been lugging the one Becky made me back and forth, which was quite hard.  I brought up the idea of leaving one there and she was amenable, so I thought I would make one.  This is a bit larger than the one I made for the back of the sofa and the one I had originally made for my bed.  Sitting on her sofa, I can either have a generous covering of my lap and torso or I can turn it and have it cover me from my shoulders to below my knees.  That's how I used it the first time I brought it ... last week.

My therapist thought I meant to just park it there, but I told her that she was welcome to offer it to her other clients whilst they were with her.  Or, maybe, she could use it whilst listening to our wounds and confusion.  Clearly I believe in their value.  And I find them helpful.  Maybe others there will, too.

The thing is, I didn't realize just how much I needed them, especially a heavier one.  I know that weighted blankets suppresses your autonomic nervous system so that it helps to calm you and help with anxiety. I wonder if the heavier weight is more helpful with me because of the malfunction of my autonomic nervous system.  I honestly think that I could sleep even better were I to get a blanket large enough for all of me and allow for movement.

I want that.

Tuesday, August 15, 2017

Beset by fear...

I find it interesting that I have a puppy dog so beset by fear.  I find it interesting the fears he's learned to conquer and the ones that fell him still.

This is my beloved Fluffernutter, begging to be picked up, as he fearfully looks about.  He becomes so very agitated, anxiously looking for what has frightened.  He is hypervigilent much of the time, but when he is afraid on our walks, that vigilance increases tenfold or more!

I paused to photograph him, this day, but then I bent down, as usual, and hugged him. Amos likes to lean his head on my shoulder for a bit, a paw about my neck, whilst I whisper sweet nothings to him. Most of the time, I can get him to walk again, but sometimes he climbs up onto my shoulders as I start to stand back up. And so I carry him for a while, until I feel his body cease to tremble. 

My poor little Fluffernutter!

I must admit, though, that I wish I had the comfort Amos does.  I wish I had someone who could calm my fears or carry me until I was more settled.

I will add, for clarity's sake, that Amos has learned a new command:  Sweetie Pie.  Whenever I call Sweetie Pie, Amos knows to come running immediately and comfort me.  Often, I called when taking care of my business is making me rather ill.  I become afraid of what will happen next and want very much to not be alone.  Amos has learned to come when I have especial need of him.  For that, I am immensely grateful.

Monday, August 14, 2017

Changes abound...

I have not been good with taking my asthma and nasal medications for a while.  I have an alarm that goes off for times a day for the four times I take my meds, but I've always treated the asthma and nasal spray stuff as when-I-get-around-to-it.  When I started the Restasis, a twice-a-day med, I was trying to be good with it, but soon devolved into try-to-remember-it.  I think that, mostly, is because it hurts too much to use the medication.  SIGH.

Well, a little while ago, I sat down and looked at what I was taking when and how and such and decided to move all of those "stray" things to morning and the 7:00 PM slot.  Morning is a tad fluid, because I sometimes am too nauseous to get my meds down, so they really are mostly 7:00 AM, but often 8:00.  In any case, those are my two slots for twice a day meds (mostly 12 hours apart).  One of the nasal meds is actually every 6 hours, so I am still working to take it exactly on time.  That said, I have become rather regimented about my meds.

Or at least I am trying.

You see, I very much dislike any sort of sign that I am a "sick person" about the house.  To me, the quintessential sign is having meds on your kitchen counter.  So, I have not done that. I have taken great pains to avoid that.  Only, following alarms and such, creating a plan and such, only works when you remember to take your meds.  It is easier with the pills in my daily med boxes with their four slots.  However, the nasal meds and inhalers and the eye drops are not easy to remember.  Out of sight, out of mind.

Trying and trying and trying to be consistent and timely with my meds ... and failing ... I had an epic Come to Jesus talk with myself and created a meds station on my kitchen counter.

My desire for visual rest doesn't much care for things on my counter other than necessities, such as my knife rack and my jars for flour and those sorts of things.  I have kept a few things, such as my tea bag holder, the tiny vase, and a cooking cloth (old napkin), on my cutting board.  Somehow I don't mind if things are on there ... artfully arranged, of course.  In fact, when visitors come with their own medication boxes and want them in the kitchen, I put them on the cutting board.

So, I fetched one of my most favorite things from when I was a missionary in Africa: a GREEN woven bowl.  I had always kept it on my desk as a lovely reminder, but my days of working at a desk are over.  I thought that if I repurposed it, I might not detest my meds station so much.  In it are the two inhalers, the two nasal meds, the psyllium husk (that I changed when and how I take it as well), and the carafate (for dry throat) that I take just before heading to bed.  I find it annoyingly ugly, but I put my inhaler spacer (a newish development) on there, along with the pitted prunes, which are really just another "medication" for me.  At least Amos' theanine now fits in with all the other meds.  SIGH.

The crappy part, for me, is that having my medications in line of sight has helped me immensely in the whole remembering-to-take department.  The Restasis drops are in the refrigerator and I try to remember to take that med out when I fetch the "thicker" liquids I need to be able to swallow my pills.


You see, the swallowing specialist's recommendation was for me to take my medications with yogurt or applesauce.  Only I have a lot of pills and that would me a goodly serving of either four times a day.  With gastropareiss, I eat very small meals, save for a larger main dish, six times a day.  [All that goes out the window with regard to when I've had barbecue.]  I have baked oatmeal in the morning (the best thing to eat after battling nausea), some sort of protein when I wake, then something main-ish, such as the pulled pork tacos, then small servings of either veggies (like my beloved asparagus) or more protein.  With having gastroparesis, eating regular meals is just not possible.

When I have guests, I have the terrible habit of falling prey to Keeping Up With The Jones Syndrome, KUWTJS (or maybe just KUJS).  With guests, I try to sit down to breakfast and then lunch and then dinner, serving them as many tasty things as I can.  I intend to have just a little bit, but end up eating a full plate.  I grow more and more ill in my innards and take weeks recovering after my visitors have gone.  I always fret about just having them eat as I do (how weird would that be), even if it was one of my "main" meals.  You see, I have the pulled pork tacos, but no veggies or salads or sides with them.  Or a cup (no longer a bowl) of Santa Fe Soup or Black Eyed Peas Medley or 15 Bean Soup and, perhaps, a cornbread muffin or a custard cup of tortilla chips.

That gastroparesis study helped me to identify and to understand the pressure I feel to fit in socially when it comes to eating.  The table is probably the only social setting where—before I fell ill—I could fit in socially.  Back when I was working, and what and how I ate had to change, it was an inconvenience to others.  Non-profits, at least in my experience, do a lot of eating together.  I was no longer one of the team at the table.  I became odd person out who caused a disruption merely by eating differently and most especially when I would order and then bring more than half my food home.

Anyway, if I have four servings of yogurt or applesauce, I most certainly won't have room or the function to digest what I would normally eat to have a balanced diet by day's end.  I thought about how much better swallowing pills were with the most awful V8 juice the nutritionist had me start drinking.  I thought about it and went to the store and bought the greens version of V8 that I saw when I first bought the regular V8.  I thought I could alternate them and use them to take my pills during my four main dose slots.

Double ICK!  I mean who would want to drink this wretched stuff???  Not me, for sure, for sure!  However, since making the switch from water or tea or Gatorade, I've had much few fewer episodes of pills getting stuck in the Sahara desert that is my throat.

Well, these changes and the echoes of my stern self-lecture still ringing about my mind have resulted in better medication consumption on my part.  I do think that my getting more regimented with the Dulera inhaler, as well as the spacer, showed a marked improvement in my breathing.  Maybe it was that and yet still coughing and gasping that gave me the courage, during a wonderful GP visit on the 3rd, to ask about taking Combivent full time, instead of merely as a rescue inhaler.

You see, I have been waking up coughing and gasping all too frequently of late.  I totally and completely get why I needed to stop the theophylline and move to a pacemaker, but on the theophylline, after about six months or so, I stopped having problems with my asthma.  It became almost nonexistent.  Oh how I miss my beloved theophylline!  How odd was it that a medication given to me to increase my heart rate and help with the fainting from dysautonomia be one that used to be a mainline asthma drug?  I ask myself that quite a bit, especially as my asthma has been creeping back in my life.

Anyway, the Combivent inhaler makes me feel ever so much better.  I started checking into it and learned that COPD patients use it full-time.  That is why I wanted to try using it that way.  I mentioned it to four doctors.  But the fifth time I tried, with my new GP, I finally landed upon a "let's see how that works for you."  It turns out that the FDA recently also approved it for the treatment of asthma.

I have only had one coughing spell since starting the Combivent full time (the evening of the 3rd) and I haven't have awoken coughing or gasping at all!  Personally, I find that rather remarkable, but I am waiting to declare victory until my next monthly GP visit so as to have more data to back my claim.

So, in sum, I've been trying really, really, really hard to be more consistent about taking my medications, searching for the supports I need to do so ... including knocking my pride back a bit and making a meds station.

Sunday, August 13, 2017


I am heartbroken....

When I went to take Amos for his walk, I discovered this.

Sometime around 2:00 AM Saturday, two boys pushed over one of my beloved lion statues.  Its mouth and nose was shattered.

I suppose I am fortunate that the body remains intact, since I have a pair of them and I think it would look odd to have just one lion out front.

I called the police and had to work a bit to have someone come out.  Something like this didn't really matter.  The policeman who is writing up the report seemed a bit broken to me.  He spoke of the increased crime in Fort Wayne and the liberal policies that put the criminals they arrest right back out on the street.  I will say that it angers me that I have seen such an increase in crime, even in my own neighborhood.  I also see graffiti as I drive out and about now.  And yet the mayor keeps insisting that crime is not any worse.  Two dead bodies on my street.  A drive-by shooting one street over.  Now vandalism at my house.  Seems worse to me.

I am heartbroken.
And sad.
And weary.

Saturday, August 12, 2017


I often do not know how I feel.  It helps me when others, such as my therapist or my very dear friends Mary and Becky, tell me what I am feeling.  Well, I mentioned that last week I joined a Facebook support group for adult survivors of childhood sexual abuse.  It has been helpful for me primarily because I have been able to encourage others who share my experience in one fashion or another.  But I have also been ... comforted ... by seeing some of the same struggles I have in others.  However, Friday I read a post that brought me to my figurative knees.  I have been trying to write about it ever since, but I have gotten nowhere.  So, I thought I would just post the words written by another that are mine:

I feel like a casualty not a survivor.

Thursday, August 03, 2017

Working out some upsettedness...

I did a bit of organizing on my computer tonight, having finally become embarrassed by just how messy my downloads folder was.  Of course, you know by now that organizing is my way of working out some upsettedness.

One of the things that I did was to rename all the graphics I downloaded about chronic illness and such.  I cannot see well enough to know which is which in looking through a folder that has many files all with a long letter/number string as a file name.  Now, I can go back and find what I need.

I thought I would post a few here.

This, to me, is such a WOW moment.  It shows you just how much your autonomic nervous systems affect your body.  So, when they go all wonky on you, ever so much can be affected and affected in opposites.  It is truly overwhelming.

I do not remember if I have posted this before, but it is something that I mentioned to the therapist last week.  There is so much in my life that I do because it is what is easiest for me or what I need to do to manage a symptom.  All of it makes sense to me and if you insist on your way of helping instead of doing how I do things, then you are really hurting me, making my life more difficult.

Then there are the ones that just make you smile!  I totally get this!!

I went from therapy over to the Walmart Vision Center to bewail my plight about the glasses again.  I would have to pay for the entire visit again if I go back to the specialist to have my glasses adjusted, but I do not like what she did at all.  My eyes were supposed to adjust to how she made my glasses after a couple of weeks, but they never did.  It was just awful.

I had learned that the women at Walmart had kept my old lenses, so I begged them to put them back in so I could have some relief.  That means that I no longer have the trifocals in my sunglasses, the upgrade I paid for last month, but it means that I can see ever so much better.  I just still have problems with my distance.

My pacemaker was firing over and over and over again because I was upset.  That, in a way, was making me more upset.  I was frustrated with myself for being unable to manage my own upsettedness.  I was also really worried about what will happen.  Will Walmart concert to remake my "new" lenses a 4th time?  If not, I absolutely cannot afford the $575 at the moment.  I already am trying to work out adding $287 to this year.  The $128 from the medical studies will help, but it is a long shot.  Plus, as it is, my quaking phone has to last into a 5th year.  That's just darned ancient for an iPhone.

I did squeeze in a quick call to my dear friend Mary after therapy.  I selfishly like for her to help me absorb what I've said.  Today, she gave me a right crackin' way to reframe a thought for me.  I LOVE ME some reframing and I stink at it.

I was asking Mary how I change a thought, especially one so very foundational to my being.  I told my therapist that I wanted her to tell me it wasn't my fault, but I didn't receive the words well.  I actually don't know how to receive them.  It is awkward and I feel the need to rush on to something else because I know I don't know how to receive them and, in truth, I don't know how to believe them.

I didn't say all that to my dear friend, but what did say was enough for her to have a thought.  Instead of setting out to, right now, change a thought, I could work on thinking an additional thought, sort of a rebuttal thought:  I didn't have a chance to....

I am not up for really delving into what I didn't have a chance to do, but her thought helps me acknowledge how what happened hindered me, kept me from doing and being what I longed.  In a way, it is a non-emotional way to acknowledge my sadness at the loss of who I could have been, what I could have done.

After ruminating on my therapy session and Mary's helpful chat, I joined a Facebook group for Survivors of Childhood Sexual Abuse. Reading through the posts, it is heartbreaking to see that I am not alone and yet also comforting. It is so very, very familiar. I will be known there.

Wednesday, August 02, 2017

Of value...

I tried to talk with my friend Mary about a thought I had today and could not find the words to match what was on my mind.  I did think of something I failed to express that might help.

Today, I finished a three-day gastroparesis patient research study.  The honorarium is $125, which was my primary focus for doing the study.  I have not qualified for all but one other of the dozens of preliminary surveys I've filled out this year.  So, I was surprised when I was chosen for this one.  However, I was more surprised by the other benefit I received from my participation.

I am a part of a support groups on Facebook for: dysautonomia (general); neurocardiogenic syncope (NCS—my type of dysautonomia); Sjögren's Syndrome; and Pudendial Neuralgia.  The latter two I mostly just "listen" whilst checking in, but I do interact in the first two, primarily the one for NCS.  In the two dysautonomia groups, there are many, many folk who have gastroparesis, but the talk is rarely about that.  For three days, I was privy to interactions with others who spoke almost solely about its struggle.  And I was blessed.

There are so many symptoms I manage that there is no time for so many of them.  The therapist finished my words when I tried to speak this, noting that not having time to address the PTSD was harmful to me and made everything else difficult.

Life with gastroparesis is terribly difficult.  It is draining and discouraging and can be an incredible detriment to your health.  During the study, I was reminded of this in a way that was helpful.  I do not always remember that one of the problems with having a slow stomach is that medications are not digested properly.  When your lunch is lagging behind, so are your meds.  One participant talked about how her doctor has her on as much liquid medication as possible.  Lately, I have been so very focused on how my battle with dysphagia is affecting my medications (my pills are dissolving in my throat because they get stuck and it HURTS) that I have forgotten that I need to be vigilant when my stomach is not working well.

There are several more examples like that, but suffice it to say the interactions were quite helpful in that I was able to spend most of my thinking for a spate of time focused on one condition and all the ways it was affecting my body.  The latter is important because I often think of (and blame) dysautonomia when it comes to constipation.  [I have only recently been able to admit that I have constipation because it is a side effect more than a condition and, therefore, something I prefer to ignore as I find it embarrassing and view it as a personal failing of mine.] However, gastroparesis causes constipation.  So, really, I have a terrible confluence of two things hindering my bowels.  SIGH.

The other part of the blessing I received from the study was that, for a while, my suffering had value. My experience and my thoughts about it mattered greatly.  And, it struck me, hours after I finished, that it bothers me that my suffering from sexual abuse has no value.  My dear friend, who is an incredible wordsmith, was having trouble with my use of value.  I couldn't really get around that in trying to express what I meant.

Tonight, I just thought of another way to describe it.

For three days, my suffering from gastroparesis had value.  My experience mattered.  My thoughts about my experience and my treatment and my opinions about resources needful for gastroparesis patients mattered.  My words were important, even though they were about difficult subjects.   My suffering mattered because in speaking about it I was given the opportunity to inform and teach research and marketing folk and, in doing so, help others in their suffering.  My suffering mattered because it was acknowledged as an experience that could be helpful to others in their suffering.

The crappiest thing about gastroparesis is that there are primarily just two drugs that you can take.  The third, E.E.S. is no longer available because its manufacturer stopped making it.  Only, that is what I thought.  What it used to be.  I have discovered that it is being made again.  But back to the two made motility drugs.  One is only to be used short term because it can cause tardive dyskinesia (the shaking you see in Parkinson's), and when the tardive dyskinesia starts, it is permanent.  Stopping the medication will not resolve it.  The other has serious cardiovascular risks.  In other words, it is a serious risk to take either drug.  Erythromycin, the third drug, can cause diarrhea, though I never had that problem whilst taking it.  Its downside, other than folk can be allergic to the antibiotic, is that it usually looses its effectiveness.

There really is no great, effective treatment for gastroparesis.  Several folk in the study talked about how they were told to simply eat smaller meals.  Eating patterns and diet does make a difference, but not always ... especially when a malfunction of your autonomic nervous system is the main culprit.

However, there exists little resources for the newly diagnosed on treatment options, OTC products that help with symptoms, nutrition, and emotional impact of both life with chronic illness and living with gastroparesis in particular.  A goal of the study was to garner information that might help in that area.

I have described one of my main problems with having visitors as the KUWTJ syndrome: Keeping Up with the Jones, or KUJ for short.  It is a real problem of mine.  Visitors come, I eat with them instead of following the eating schedule that is best for me.  I feel great pressure to join in, to eat "normally," and so I do.  I do no matter the consequence to me.  I do and I hide those consequences.  I do and I spend weeks recovering, trying to find that balance with my innards again.

Several of the participants talked about how very isolating gastroparesis is.  Eating together is a large part of building familial, personal, workplace, and community relationships.  When what you eat and how you eat separates you from others, it is difficult to build those relationships.  I saw it happening at work when reactive hypoglycemia became a problem.  And it became worse when I started struggling with nausea, pain, swelling, and the rest.  For a while, I lost quite a bit of weight because I just couldn't eat.  Not eating at staff meetings and grand opening/ground breakings set me apart.  But I felt isolated, but I did not have the word for how I felt.

Several participants described how they felt about the study as being "therapeutic" and "therapy."  Seeing that made me smile because I knew that I was not alone in what I thought and felt about the study.  And that, there, is the true value of a support group, why I go to those on FB even though they do have their downsides:  I am known.  I can talk about things without having to explain.  My life, my thoughts, my feelings, my experiences are accepted and shared, in part, by others.

What I was trying to say to my dear friend was that, for three days, my suffering with gastroparesis had value.  My experiences and thoughts mattered.  My suffering was seen as something that could help others.

It bothers me that that is not the case with my suffering from sexual abuse.  That topic is so very hush-hush.  Folk see it as inappropriate and disturbing.  Talking about the topic in general, as something that happens out there or elsewhere is fine.  Talking about your experience and thoughts is not encouraged.  Is frowned upon.  Is forbidden.

When folk talk about the rates of childhood sexual abuse, you hear: 1 in 4 girls and 1 in 7 boys.  Look around any given gathering and that is a staggering number.  However, something few talk about is that those accepted numbers are based on reported abuse.  It is also generally accepted that it is more often than not that abuse goes unreported.  There is too much shame.  Too much social pressure.  Too much hurt ... overwhelming hurt and confusion.

But the thing is, when your suffering is not valued, when your experiences and thoughts do not appear to matter, especially as a way to help others who are suffering with the same, it is easy to believe that you will never be known and, therefore, never belong.  And that, sadly, you, your life, does not matter.

I still do not think that I got where I wanted to go with what I wanted to say, but I am hoping this speak, in part, to the thought I had.