Tuesday, December 19, 2017

The things you endure...

Crushing headaches.
Tingling lips.
Weight loss.
Jerking limbs.
Dry mouth.
I Don't Care.

Those are the symptoms I've been battling for 11 days now.  This new drug packs a wallop.  Friday, I will be doubling the dose up to the lowest therapeutic dose for neuropathic pain.  Then, it will be a couple of months before I know if it will make a difference with the pain in my hands.

61 days.
Shock. Schock. Schock. Shock. Schock. Schock. Shock. Schock. Schock. Shock. Schock. Schock.

Frankly, after all the weight gain with the gabapentin, I do not mind the weight loss.  However, I am fairly certain that it might be labeled a bit of a concern.  I am not concerned because I have LOTS of weight to lose.

I also do not mind the drowsiness in that I am sleeping longer segments at night.  I very much dislike when I awake after just an hour or ninety minutes of sleep.  Sometimes, now I am sleeping three or four hours before waking and needing to fetch fresh ice packs.

However, the drowsiness in the late afternoon/early evening means that I HAVE to take a nap.  That's because the yawning causes me to gag.  Every. Single. Yawn.  It is very, very, very difficult to continually fight back vomiting with the constant yawning.  It is easier to just give up and sleep.

The rest ... I am just trying to endure.  The hardest is feeling so numb and not caring about anything.  It is difficult to think, to talk, to do.  So, I haven't done much.  And what I have done has not gone so well ... especially my Christmas treat packages.  SIGH.

The things you endure for even the merest hope of help with your pain.  In my opinion, chronic pain is impossible to understand unless you live with it.  And I do not wish such knowledge on anyone.

Tuesday, December 12, 2017

Symptoms and symptoms...

In the absence of data that an MRI could provide and on my 50th day of constant shocking in my hands, my GP decided to add duloxetine for pain management.  I have been of two minds about trying the SNRI drug.  It is an antidepressant, after all, and there is a stigma about taking those meds in the medical community ... yet another reason to be labeled a "head case."  But the pain in my hands ... being shocked constantly ... is driving me nuts.  I agree to try the medication.

It's been five days and I wouldn't think that it could be affecting me this strongly, but what I am feeling my therapist says is clearly the duloxetine.  I am numb and basically do not care about anything.  It is a weird, weird state to be in, at least it is to me.  I have lost a bit of weight because I have absolutely no interest in food.  Me!  Me!!  That alone is shocking.  Of course, though, I don't mind the weight loss after all the gabapentin weight gain.  I just ... I just don't like the me that I am right now.  I am hoping this passes.

As far as side effects, the nausea is different from what I usually experience.  A lot more vomiting.  I have crushing headaches.  I have random shocks in my body.  And my lips are tingling.  Fun times.

In reading about duloxetine's help with the neuropathy, I need the dose to be at least 60 mg.  My GP said that I could go up in two weeks, but I'd rather not pay for the medication twice in a month.  My therapist suggested that I take the full 30 days, too.  It is a toss-up between symptoms of side effects and symptoms of neuropathy.  SIGH.

I tell you, the combination of brain fog and IDON'TCARE is making life hard, especially trying to take all of my meds at all the time slots I have throughout the day.  I haven't done much since starting the medication.  Well, other than going to appointments.  I forgot about a prescription at Walmart that was only partially filled, but it seems Walmart also forgot about it.  So, I need to go fetch that.  I had planned to not go out until next Tuesday, but I suppose one trip will be fine.  I am just not up for driving whilst in this IDON'TCARE state.

My sister completely spoiled me for Christmas and her present arrived today.  Normally, I would have already had it put together so that I could photograph it for the world to see, but IDON'TCARE and I am cold.  I am so very cold this winter that I am contemplating throwing my budget out the window and turning the thermostat UP.  I already did that.  I went from 55 to 60 degrees.  But I am still so very, very cold.  Whenever my realtor comes, I turn up the thermostat for her, to 65 degrees, and I feel much better then.  I just don't know how much more that will make my heating bill each month.  However, I am not sure how much more cold I can take.  In any case, I am hoping to put together my gift on the morrow.

For now, I am trying to think about something my therapist asked me to consider:  not saying that I was bad, but that I was terrified.  I was telling her about what happened during the blood flow testing.  I was thinking about how I was not being a good patient and she asked me to explain that.  I said that  I was shaking and crying and pulling away from the tech's touch, making things harder.  But my therapist responded:  you were terrified and lost back in the past.  She said that I was brave for staying and that she was amazed that I made it through that.

I have been turning that over and over in my mind.  I wasn't bad; I was terrified and my responses were natural and understandable.

But then we talked about how I coped with all the disgust and fear that overwhelmed me afterward.  I cut.  It is so hard for me to think about that.  I hate how effective cutting is at coping.  But my therapist insisted that there is no shame in that.  There is no shame in trying to keep myself safe in a way that is less destructive than drinking or drugs and less permanent such as suicide.

I cut and it is as if I am cutting through the maelstrom of emotions, stilling them.  The pain brings all my focus away from what is tossing me about, leaving me desperate for escape.  Then, the wound serves as a ... tool ... for days and days afterwards.  If I become overwhelmed again, I can just press on it and let the pain calm me again.  My therapist said that must be comforting to me.  I do not think that I have ever given thought to that, but it is.  I do not cut all the time and work hard not to, but I as much as I loathe that I have done so I welcome the help when I have a wound on my thigh.  SIGH.

I talked with my GP about it and she asked me to show her.  It took me a while to do so, but I did.  I was surprised at how ... non-plussed she was.  She asked if we could talk about it another time.  I agreed to that because I am trying not to be so ashamed.  That's why my therapist's comments were such a relief, how adamant she was that there was no shame in cutting.  And that she absolutely believes that one day I won't need that Big Gun coping mechanism.

It was a weird, weird conversation to have being so numb and in such a state of IDON'TCARE.  But I suppose she is used to someone trying to acclimate to an antidepressant.  I asked her what happens to someone who takes an antidepressant who isn't depressed.  I've never been diagnosed as such and she doesn't believe that I am.  She said she didn't know.  I do worry about that, especially with the IDON'TCARE permeating my every existence.  But I would really, really, really like an end to the shocking in my hands.

I do welcome the numbness, just now, and the weight loss, for sure.  But to have no interest at all in food?  Cooking has been the only thing that was moving forward in my life, the only area where I have been able to learn and to progress.  And, my goodness, with all the nausea I battle each day, I need my interest in tasty food returned!!

So which symptoms do I choose????

Thursday, December 07, 2017


Yesterday, I woke early to a phone call canceling my MRIs scheduled for the 20th.  I have been so very worried about having my pacemaker turned off for them that a part of me was instantly relieved.  That is, I was so until I learned why my appointment was canceled:  my pacemaker is not rated for MRIs.

When I was learning about the model I was getting, I specifically asked about MRIs because I have them regularly. Well, I had them regularly until I started avoiding them a few years ago.  Avoiding neurologists, rather.  I asked several times in my nervousness.  And yet somehow my leads can be in an MRI, but my pacemaker itself cannot.

I am overwhelmed.

Trying to wrap my mind around this news—news that basically means that I have to have pacemaker surgery again if I want to have an MRI—I went to my blood flow study.  I was told it was an ultrasound.  I assumed that it was something akin to the last blood flow study that I had.  When I arrived, I asked to speak to someone from the pacemaker clinic, because I was absolutely certain the news that I had received was wrong.  Long story short, it was not.

Reeling, the tech told me that I would have to be unclothed, in a gown, would involved my groin and pelvic region, and would take two hours.  I started melting down.

My choice was to leave or to stay.
Leave and not have the data my cardiologist wanted.
Stay and have my PTSD triggered.  Something fierce.

I chose to stay.
I am still triggered.

Afterwards, I thought to cheer myself by getting a Christmas tree.  Only the JERK who did the fresh cut keep cutting and cutting and cutting.  I tried to stop him, but he ignored me.  Rather rudely.  You  know, my being a female and all.  I paid for the tree and brought it home and had an asthma attack carrying it inside.  All before I realized that the bottom of the tree was now so short it would not fit in my stand or pretty much any stand without pruning off quite a bit of the tree.  And, in the process of realizing this, my not-yet-two-year-old-metal-stand broke!

I thought about just ... well ... I decided to go back to Mendard's and ask for a refund.  This was, in part, because Taco Bell put onions on my no-onion bean burrito.  That has happened so frequently I stopped ordering my beloved bean burrito, an order I've been making for three and a half decades, but I just wanted one.  Only, I forgot to open it up in the drive-thru lane to see if there were onions.

I did receive a refund and thought about leaving.  My sister was on the phone and suggested I leave, if that was what I wanted.  She suggested that I just skip Christmas, with all that has been going on with me.  I thought about that.  But I do want a tree.  Although ... I'd like to decorate it the way I wanted, not with all the decorations I've been gifted.   I voiced that thought, since I will be alone this Christmas, and my sister encouraged me to just go look at trees ... and stands.

I choose a tree that was all wrapped up, not knowing what it looked like, because I knew I could easily get it in my car and I could get it into my house by myself with the bear hug method.  It is not exactly a Christmas tree shape, kind of skinny and leaning quite a bit, but it is my tree.  When I got fetched the stand from the attic, I grabbed the box with the tree skirt and the lights.

I thought I would like to decorate the tree with just my glass ornaments and the half-dozen from my childhood, but it is awfully difficult going up and down two sets of stairs.  I think I might just leave the tree as it is.  After all, there won't be any presents underneath it.  And it will be just me looking at it.  It look okay like this, eh?

Today, aside from wrapping the lights around the tree now that the branches have dropped down from being all wrapped up, I finished the frame for the stained glass window that I bought for my haven last March.  [Firewood Man never got a chance to make the frame, so I finally got him to bring me back the window and loan me his miter saw.]  The good news is that I finished.  The bad news is that I broke the second pane of glass again.  That's $28 down the drain!  ARGH.

I decided to just leave the back side open.  What I can do is caulk the top and sides of the frame once it is hung to keep the elements away from the back side of the window.  But I am hanging it on the side of the garage with a roof overhang.  It should be fairly protected.

Overall, I would give myself a C+ on this project.  Clearly my wood skills leave much to be desired.  My only final worry is that the frame will split when it is hung, since I plan to screw it directly into the garage wall.  I have to have help with this part, so maybe the other person (I am assuming/hoping Firewood Man can help) will be so skilled with drilling and screwing that the frame will be fine.  I would like it hung as soon as possible, even knowing that I won't be able to fill the screw holes and paint them until next spring.  I just want to be able to see how my vision for my haven turns out.

I will admit that it took me well over an hour to figure out how to use the glazing points to hold in the window and the pane of glass I have in front of the window.  The way I kept trying to put them in was with the bent pieces parallel to the frame pointing down, as if they were to slip between the glass and the frame.  What you do is have those bits pointing upwards, so you can use them to tap the pointy bit in until those bent prongs rest up against the frame.  It was ever so much easier to put them in when the glazing points are in the right direction and orientation!  SIGH

With the frame completed, I tortured myself on the recumbent bike, showered, and built a fire.  I spent the entire evening clutching Amos and roasting myself before the fire.

I am still overwhelmed.
I am still triggered.
I am still weary of the wretchedness of this life of mine.

Tuesday, December 05, 2017

Start and stop...

Wanting to DO SOMETHING yet again, I got everything ready to continue working on the frame for the stained glass window.  From the garage, I fetched the two glass panes, the stained glass window, the under frame, and the staple gun.  From the basement, I fetched my drop cloth, pliers, primer, paint, stir sticks, paint triangles, paint brushes, liquid nails, and the doohickey you use to apply sealant or construction adhesive.  It was a lot of work to get everything set up.

I needed to adjust the inner frame, so I pulled out all the staples on the two left side corners and repositioned that piece.  Then, I stapled it back into place, and I added staples to both sides of all four corners.  Finally, I added staples to the back side of all four corners of the outer frame.

After checking and double checking that I could move the glass and the stained glass window in and out of the inner frame, I went to glue the two frame pieces together.  Sadly, the liquid nails had hardened.  It was too old.  And I had broken the 6th rule of construction projects:  Wait until the project is done before making your returns.  I bought a new tube of liquid nails, found a tube in my basement, and then returned the new one when I bought the second glass pane.

The pane of glass that I broke today.

I wanted to SCREAM.  There was no way that I was going to go out and fetch more liquid nails because I went to therapy today.  I have a test on the veins in my legs tomorrow.  And I have another doctor's appointment on Friday.  I can possibly stop by Lowe's tomorrow.  Tonight, I just have to wait.  Be patient.  I stink at that when I want to DO SOMETHING.

Since the balmy weather finally fled tonight, I decided to have a fire and concentrate on not castigating myself for breaking the pane of glass ... for wasting $14.  I am really, really, really tempted to not have a pane of glass in the back, but I do still think that having the stained glass window sandwiched between two panes of glass and sealed with clear caulk  (ah! ... doohickey = caulk gun) is the best way to protect the stained glass window outside.  So, I will be buying liquid nails and yet another pane of glass.  SIGH.

It was rather frustrating to start working and to find myself abruptly stopping.  It is not that I want to finish the project NOW, because I am not going to be able to install it without help (translate that:  without Firewood Man's drill).  But I did want to make progress.  I was hoping to get the priming done and one coat of paint.  But I do not wish to prime until the two pieces are glued together.  Or paint.  Mostly, this is because I need to be sure that gluing the pieces together doesn't make the window no longer fit into the inner frame.  Maybe that is a ridiculous worry, but it is my worry.

The fire?  Well, that was just lovely!  Firewood Man was not able to bring more wood for a couple of weeks and then we had this crazy insane balmy weather.  But tonight we had bitter cold weather due to the wild winds that started yesterday.  So, I was able to roast myself before the fireplace.

Here's a tip for you:  Don't roast your feet before a fire if you are wearing Birkenstocks.  The soles will come unglued from the heat!  Yep, my feet are so cold from Reynaud's that the heat can be intense enough to melt shoe glue and yet not even feel warm to my icy skin!!

I'm colder this winter already, but I do not know why ... unless really you blame my wonky nerves and the autonomic process that keeps you warm.  Last year, I kept the house at 55 degrees.  This year, I had to up it to 60 degrees.  And at that I am still very, very, very cold.  When my realtor comes over, I bump up the heat to 65 and only then find the temperature bearable.  However, I cannot afford keeping the house balmy this winter.  Or any winter for that matter.  But especially this winter.

Despite the cardiologist's certainty that I have venous insufficiency, I am expecting the test results to be normal tomorrow.  I still think that whatever's going on has to do with my heart.  Of course I am probably wrong, given that he is very good at his job.  But I've finally got back to walking on the treadmill and the thing that I keep seeing is that I have breathing problems when my heart rate tops about the 130s.  On the recumbent bike, I just cannot get my heart rate up high enough.  However, it isn't just standing because I can walk at a lower pace and keep my heart rate around 120 and my oxygen sats drop to 91-92, but no lower.  Once I get over 130, my sats start dropping lower and lower and breathing gets harder and harder.  Something is happening.

Of course, to be fair, I will admit that I do not hold out hope that the high resolution CT scan will give any answers either.  Mostly, I think this because, with dysautonomia, normal test results are the norm.  That's why my bum kidney blood work was so surprising to me.  I am not looking forward to the next blood test even though I've gone down—again—on the amount of Celebrex that I take.

No, I cannot think of why my overall heart rate rose in September/October, but the higher it was, the worse the breathing got with any exertion.  High is not good for me.  Why? I cannot think why sometimes my legs go from being swollen to be alarmingly doughy.  But its randomness speaks more to dysautonomia rather than the valves in my veins.

But I will use the opportunity to practice medical optimism during the testing.  Smile and nod and look hopeful!  Hah!!  SIGH.

Yep.  I'll definitely be fetching the liquid nails and glass pane on the morrow.  That way, after the testing, I can distract myself by DOING SOMETHING.  From the testing and from the comprehensive physical exam I'm having on Friday.

Monday, December 04, 2017

Eight days...

I keep trying to write, only to find myself with nothing to say.  Or nothing worth speaking.

It's been a long, long week (or rather eight days), with a few bright spots.  One was getting my replacement refrigerator.  It arrived on Thursday, which made for a long, long day.  I had to empty mine and then re-fill the new one.  The good news is that the new one is much, much better than mine.  Small things, really, that add up to a BIG difference.

For one, there is an extra cubic foot in both the refrigerator and the freezer.  In the freezer, it almost feels as if there is two or even three.  Mostly, this is because of the second bin in the freezer.  Storing things in a bin, things that cannot be stacked easily on a shelf, multiplies space.  Also, the three bins in the freezer door are much deeper and have more space than I can think of how to use.

On the refrigerator side, the best news is that the light box that was at the front of the top of the refrigerator, blocking access to the top shelf is gone.  The light is now in the back corner.  And the top shelf is ginormous.  Every time I look at it, I am amazed anew at just how much space there is and that I never, ever have to tilt my jug of milk in order to put in on the shelf again!  Like the freezer, I have extra space in the refrigerator door bins.  Two are only half full.  Shocking, eh?

The less than good  news is that the two extra shelves in the freezer that I need to manage all my ice packs did not fit in the newer model.  I was able to take them from my original new refrigerator from five years ago and put them into the new refrigerator I bought a year ago.  But I am not able to put them into this one.  They are too narrow.  So, I had to spend far, far, far too much money replacing those.  You see, the side-by-side models only come with three shelves, thinking that you would want a space large enough for a frozen pizza on its side.  Well, yes, maybe, if you didn't have a neurological disorder that made ice packs one of your most prized and needful possessions.  SIGH.

Most of the last week was spent being ill or resting or avoiding my thoughts.

Firewood Man did finally bring me a load of firewood and he did the final mow of the year.  This meant that he also tended to all my leaves.  Well, except for the leaves from the ornamental pear tree out front.  Those are still on the tree!  This was the first year I didn't have to do the raking and bagging and I am deeply relieved and thankful.

I was able to prune the burning bushes for the year.  If I do not, they start growing up over the windows that are above the built-ins in the dining room!  Pruning is not so bad, but cleaning up is rather hard on me.  Too much bending over and getting up from a squat.  I also pruned the weeping cherry as best I could in case I am not able to get it removed.  It is still massive, despite having pruned enough for an entire yard waste bag.

I also worked on refilling my larder, which was getting a bit low.  I now have 10 different options in my freezer for meals and one dessert option.  I have been a bit lax on refilling those containers.  I would like to try a new recipe or two, but it was good to do a bit of cooking.

Finally, I started work on building a frame for the stained glass window I bought for my haven last spring.  Firewood Man hasn't had time to do so.  I spent a long time thinking about what I could make and asked to borrow his miter saw.  I have much of it done, but have not had the energy to pick the project back up.  I still need to work on the inner frame, how the window will be held in place. Then priming and painting.  But I have the outer frame done and ready to paint.  When it is all done, I will still need help installing it.

So, some productivity and some cooking and a lot of just ... being.

I've mentioned before that I wondered why the authors of my favorite dysautonomia blog stopped writing.  I get it.  Life becomes too overwhelming.  And there are no words sufficient to speak such a life.

Since I started therapy (for the umpteenth time) last April, all I have been doing is be overwhelmed.  I keep thinking that I am wasting her time because we just ... I just ... well, I spill out how I've been overwhelmed the intervening week and we never get around to ... the hard stuff. 

All I do these days is manage.  I manage pain and manage medications and manage symptoms and manage ... well, manage and endure.  For I was going to say that I manage my fear.  But I am not managing that.  Would that I were.  SIGH.