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); Sj√∂gren'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.