06/28/2019 Update

Since my last update I made my trip to Dallas to see the specialist.  And I so apologize for not having posted this.  I will explain in my next post.   

Let me tell you I hate trips.  Not the trip itself but the getting-there part.  I bought a mattress topper and cut it to fit length wise, then folded that sucker to make two layers.  Then I wrapped it in a fitted sheet.  That was my base for my back-seat nest.  I still used the wedged foam pillow and my bed pillow.  All that did was support the curves in my body.  That did help some, but it did not help the issues with my joints going to sleep or the appendage that is resting on another one from hurting.  I had gone to the family doctor and refilled my tiny “don’t kill the driver” pill.  For each leg of the trip I swallowed a half to help keep me drowsy; and then to sleep I took another half.  I sort of kept a diary for each day on the trip down there and I will include some of those comments now.

6/17/2019

It took an hour to get to the other side of Atlanta.  We stopped at a gas station so I could stretch and walk for a few seconds.  I was hoping that we would be able to stop about 30 minutes further along the interstate.  You know you cannot drive any major highway in this country and not run into road work.   So, my lunch was delayed a full hour.  And if you are crazy enough to think about getting out of your car, to stretch, along a work zone, don’t expect any pull-off areas.  Then when you know the road work powers to be will not alert you to where it starts until after the exit that you could have pulled off to fill your belly.  Add, you have the rude ones that will not get in line with every other polite driver and merge.  That just makes the whole experience angering. 

After finally crossing the border into Alabama, we made a pit stop at a state rest stop.  Yep, this girl needed a restroom.  Would you not know it, when I got my chance this disease kicked in and that was a wasted stop.  So down the road we go to eat fast food.  I was a genius and decided to change hips back in my nest.  If we were not so close to the son’s home, I would have made the chauffeur pull over so I could switch hips again after the humming and burn got out of control. 

6/19

Today was interesting.  When we entered into Louisiana, we saw the flooding crossing the Mississippi.  Then a few miles later we saw a young black bear trying to cross the interstate. [Highlight of the trip!]   The last time we made this trip the roads in Mississippi was pitted, bumpy and just plainly pot-holie.  Love my terminology?  Well, thank goodness they were improved.  But there were places in Louisiana that could use some repaving and a giant level.  When you see the cab of a tractor trailer dip and wonder if the axles on its trailer will break you know there was no professional group doing the road work.  It is funny really when you think about it —  I rode a car to make the trip more comfortable instead of being squished into an airplane seat.  There is not a joint, bone, or muscle that likes me right now. 

But the scary part was the email my husband got saying the Fairfield Inn changed our hotel at the last minute.  What!!!!  Oh, they wanted us to go to one that was just 13 minutes away.  Well thank you very much, we are talking Dallas, which is like Atlanta.  Thirteen minutes really means an hour in the daylight hours. 

6/20/2019

Today was the appointment.  Um, can I say I was shocked.  The doctor said he did not see new cysts on the images.  Ok, so I have to go with that.  I spent three days in my car, and now what I have to take from the visit was to find a really open neurologist to discuss the head issues.  Maybe if I could get rid of the head issues my rear could think about healing from the fall.    He wanted to get me an appointment with a local pain specialist to discuss the stimulators.  So, what did I do?  I left so close to tears.  No appointment.

Why would someone with ‘good’ news feel the need to cry?  One is that the fear is relieved.  Let us face it, after my fall in January, life has gotten so bad that I can barely function.  I have not shared everything with the physical issues that have grown, with this blog.  That is a choice I made as a blogger.  I feel like I need to be positive, not only for myself but for the readers. 

Second, how the heck am I to deal with the discomfort that is growing?  I just hate the idea of doctor interviewing for pain relief.  The first thing they will want/demand is that I try their shots.  Sorry, not happening.  Then they want you to pee in a cup each time you come in, then well heck you are depressed, and on and on.  In the area I live in everyone is so disappointed in those types of doctors and hate the idea of seeking appointments.   When I say ‘everyone’, that is not just the ones with Tarlovs.   Then if I re-try to find a neurologist, I will probably keep the knowledge of Tarlov Cysts to myself.  Egos are a wonderful thing, to a point.  

Third, how the heck am I to deal with the symptoms?  After four and half years, and having a great last year, how?  How do I accept the ‘having to deal again’?   I question my fortitude to stay positive.  I question my ability to play nice when things are expected of me and I don’t have the strength to even attempt.  And I am already losing my freedom.  [When I said “great last year” that is not meaning anything other than “considering having pain at some level every minute of the day”.]

6/23/2019

We have been in our own home now for a few hours.  Yay!  Can I say I hurt?  Every nerve from my hips down are humming.  My shoulders are so tense, and my neck feels like rubber.  At least my brain does not feel like it is exploding.  I finally gave in and took meds to get me here.  Yep, I took something each time I got in the car to go the next leg.  Since pain meds are hard to come by I horde those little buggers. But not the three days coming home, I had already cut each in half before we even left home.  Sometimes I am smart enough to be prepared.  So, a half of a pill for pain and my crackers to keep me from puking because of the med.  Since I have half dozed each day for five to six hours and then slept [rrriiiight, right?] in hotel beds for the last six days, you watch, about every three hours I will have to get up during the night.  If anyone is contemplating the car drive to see their doctor let me suggest taking an extra day to rest before you are crazy enough to hop back in the car to go home. 

6/28/2019

Let me tell you my funny during the doctor’s appointment.  I had taken meds that morning.  Well those meds will make me sleepy or just the opposite.  I was so hyped up that the poor doctor could tell my brain was jumping way ahead of what he was saying.  I heard everything he said, but I wasn’t giving him time to finish before I asked my next question.  Poor guy having to deal with me. 

This last week has been a time to recover from the trip, I didn’t want to spend time thinking about it or about my worries.  I just flat out ignored it.  The neighbor’s dog was relatively quiet except for the last two nights.  The first night I stepped out to tell him to hush and find a spot to lie down, and guess what.  The neighbor down the hill beat me to it.  Then the owner came home at 2:30 and took the poor dog in with him. Then last night I decided to sit in the swing on the deck.  The dog started whining because the owner went inside the house.  I just sat there and talked to the dog.  He listens until I get quiet.  Well, I was telling the poor dog I was so sorry he had bad owners and did not know the young teen had come out.  Egg on the face?  Heck no, not for me.  Some might wonder why we don’t call the police.  They have already told us that is between neighbors, they won’t step in that arena. 

When I finally went in to bed I was playing my app and listening to gospel.  I could not rest, just doze.  Then this morning I was out of the bed by 6 and on the deck again.  I can’t take the discomfort that lying in a bed causes if I can’t doze thru it.  The dog was out all night long and was still whining.  So, I started talking to him and eating my breakfast.  Those people did not come check on the dog until after 9.  But before then, I started the app up to let him listen to Opera.  That dog likes it, he stays quiet for the tenors.

For some reason my body decided it need more rest (sarcasm).  I plopped myself right back in bed.  I guess that was sometime around 10 and I just dozed on an off until 3.  My body feels rested but my brain is in slow mode.

So now to face reality and find a neurologist that is local for the head issues.  I am thinking I might have to find a functional medicine practitioner.  They are the only doctors willing to give you blood work that delves deeper than what the insurance companies will pay for.