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Daily Life

10/06/2020 Update

I have been trying to put this update to the key board and every time I start to, I just break down.  It is not a post about “depression”, it is a post about “pain” and “anger”.  It is a post about “fear” mixed in.

Saturday, I was on my bed playing a game on the tablet and was not paying attention to how I was reclining.  So, I tried to get up and could not.  I mean I really could not move my middle back down to my toes!  I know I was  on the bed for over 30 minutes and possibly over an hour.  That is absolutely too long for this body to recline.  There is an angle that I have a problem with and I thought that I was not putting my body into that zone of stress.  When I first reclined it was very comfortable and I did wiggle a little to re-adjust my body, but …..  Either I stayed in one position too long or I did not get the warning signals when I moved.  To explain it a little, think of having a cramp.  After the cramp wears off you are sore for a few hours or even days.  But you “try” to push your muscle to the point of ‘almost’ pain to stretch the muscle out.  You can feel the tightness of the muscle and you can feel how far you can stretch without feeling pain.  Usually that warning is what I get when I recline at certain angles.  The spine yells at me, “I dare you to stay like that.”  Knowing what will happen I am extra cautious not to lean back into that region.  Thus, how this happened I do not know.  I am wondering if my spine is expanding its range of recline that I can not do.  If that is the case, it is going to be hip sitting for the rest of my life.  Or it will be not being able to move my legs.  Oh, the choices(fears)!

So we can laugh at my  predicament, let me share my fun.  I am on the bed trying to roll over to lift myself into a more correct sitting pose and needing to visit the little girls’ room.  As I try to roll over, my body freezes.  Usually I have a house coat belt hanging on the bedpost, which I use to pull the legs into a different position.  No belt!  Let’s not forget having a handy dandy cell phone, yep, no phone.  Accordingly, I resort to yelling for the husband.  Now, this house has 6-inch wall studs.  Plus, the ceilings are over 12 feet so you cannot hear from one room to the other.  But I try!  I have found out when you are in pain, you either scream your head off or your scream volume gets turned down.  I call the husbands name for a good five minutes to no avail.  Then I get the bright idea to message, using my tablet, for the kids to call him.  That required trying to do it with one finger.   My son tried several times, but the husband could not hear his phone.  Then the son calls my cell phone.  I could hear my phone, and the husband was much closer to it but never heard it.  By this time, I have the tears flowing.  My son asked if I needed an ambulance.  He lives in a different state, by the way.  When I really started thinking the ambulance was sounding like a blessing, in walks the husband.  I told him I was getting a buzzer installed that flashes strobe lights if it happens one more time.  That man has a huge ego, he knows he needs hearing aids, but refuses to get them.  He has heard all the sad stories about how they are so difficult to use and how they are not the best for hearing people speak.  Well, excuse me!  If I have to use a walker, I think hearing aids is a little more classy. 

By the time he moved my legs I was ready to smack someone.  Just moving them caused more pain.  Then as he was trying to lift me into a sitting position I was bawling.  I went from tears flowing to out-loud crying with groans and ouches.  When I was finally up, into a sitting position, I tried to stand up.  My legs from the knees down were completely numb.  “Numb” is really not a good word.  I could not feel anything.  I am sure the floor was cold, but I could not tell if my feet were even on the floor.  Between crying, needing the potty, and being in pain I braved using the walker to get myself to the little girls’ room.  It has been years since I had to roll that thing to the bathroom with me.  I even had to use it to raise myself off the seat.  I won’t share about clothing being in the way.  I will let your imagination form a picture of that. 

After getting back on my bed I requested my meds, a snack or two, a cell phone, and then all my chargers hooked up.   I let him return to his ball game.  I even resorted to a heating pad, and my Christian music on the tablet.  I did not really sleep due to the pins and needles attacking my surgery area.  I could not lie on my left, nor my right, much less flat on my back.  All the med did was make me groggy, and allow me to get a few bouts  of sleep.  The next morning the workers came to do more on the remodel of the bathroom and I never said hello to them.  I went into another room and stayed drugged up and asleep. 

Are you wondering which meds I took?  Well, it was not pain relievers because I have none.  I took a muscle relaxer that puts me to sleep.  What I find unusual is that I can sleep and still know I am in pain.  The first day after the freezing up fun, I spent in bed. My second day was sorta productive due to staying in bed like a zombie.  It allowed me to do some things toward unpacking a few of the items that were still packed from the move.  It also allowed me to remeasure the bedroom and decide I want the furniture moved.  Any takers on helping me?  

I was able to drive today.  Tomorrow I might be hitting the road to go to a funeral for the family.  That will be a ten-hour ride in the back seat of our SUV.  That lovely walker will be making this trip with us.  And no work on this remodel.  And let me graciously share that I do not have a liking to wearing those masks.  Really, I think I start having panic attacks when I wear them.  They make me feel like I can not breathe.  And they heat up my face so much that I look like I am running a fever, so my face sweats.  Sweating is moisture on my skin and with the Aquagenic Pruritus that means feeling like I have bugs crawling and itching my face.  Water on my skin is not my friend.

Now I will touch on the “fear” part of the post.

With having a rare disease, it is scary to have a new symptom, or even an old one pop back up.  Remember that word “rare”.  What it really means is that the disease is not understood by all doctors.  It means being treated like you are a little off in the rocker.  It means being treated as a drug seeker.  Just suffice it to say that most doctors know nothing about it and are not willing to help you research.  Then add this “freezing” that my body likes to throw at me, I wonder if one day it might become indefinite. 

Fear is real and I do not think any other person can really ease your concerns about the ‘what ifs’ that come with something like this.  Words people say, trying to ease your mind and to calm you, might be doing them good, but….  They really are just words.  They last as long as the sound lasts.  It is nice of people to try to reassure you that all things will be ok, but….   Words can never resolve the fears for very long.  That is one of the reasons I blog about my life.   It is so the next Tarlov Cyst person might find something to comfort them and let them know what I go through.  They may not follow the same path as me, but they can learn from me.  It is not for me to tell them everything is “all good”.  But I can let them know they are not alone.  I can share things I have done to handle the discomforts.  And how important accepting the disease is to keeping their mind from depression.  And that they know that I do not spiel out medical advice.  [gotta put that bit in!]

If anyone knows where I can get a strobe light that will work in every room; lets add “that is voice activated to the word “help” or a name”, let me know.  Asking for a friend (spouse). 

On a side note!  WordPress I can’t figure out your block business.  I do all my posts on a word program then copy and paste.  Your blocks don’t work with that.  Please leave things alone.  Changing something just to do it is a waste of effort.  Also, I have noticed that the list of my “tags” have gone away!

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