Getting a blood patch for CSF leak

This is the last part of A very long walk.

For those of you who have been reading along and commenting…there is a happy ending and an even better future

The PLAN was that my dad would drive me in my van with the seat laid flat, and my mom would follow in their car. Decatur Memorial advised my local hospital that I would be arriving later that day and that I needed a BLOOD PATCH.  They even printed all my records for me to take with me.  Yah should be pretty simple right?!?

joker-laughing-gif-3

NOT EVEN A LITTLE BIT!!!!!!!

While we did make pretty good time getting there, ( a little over 4 hours) the hospital could not just admit me because I had declined the ambulance transport, instead they tried to seat me in the waiting room.

When you go to the Emergency Room, they take patients in the order of the severity of their injuries, I get that… Unfortunately a “headache” doesn’t rank very high on the list.

I don’t know if you have ever had the kind of headache that comes with a spinal fluid leak, but I promise you, it’s enough to make you think you are losing your mind.  I still can’t quite explain it either.

Maybe kind of like the spins, after a night of too much drinking combined with someone smashing your head between two symbols while trying to speak to you in 3 different languages at the same time?

I really think I must have looked like I was losing my mind because I literally laid on the floor in the emergency room to try to stay horizontal.  I’m really not a germaphob, but even I would draw the line at that normally.

I was frustrated, my parents were frustrated why couldn’t you just do this blood patch thing?!?!?  I don’t remember all of the details that followed other than, I left and went home.  Well my dad drove me home and they both stayed at my house with me.

I think some of the difficulty was that it was a holiday weekend.  Another issue was that they were not sure where I was leaking cerebral spinal fluid from, and doubted the effectiveness of a blood patch if they didn’t find the right site.

Once the weekend was over, my mother was able to contact the neurosurgeon that had performed my thoracic laminectomy from a few years prior, and he said to bring me right into his office and he would do the blood patch immediately.

So what is a blood patch?

An epidural blood patch is an injection of your blood into the epidural space. The epidural space is not an injection into the spinal cord itself. The spinal cord and spinal nerves are in a “sack” containing clear fluid (cerebrospinal fluid). The area outside this “sack” is called the epidural space.

This is a great link explaining it in more detail.  What is a blood patch?

I remember being terrified to stand up after the procedure.  I had the doctor on one side of me and the nurse on the other, and I slowly stood up….. Nothing happened!!!!!  My head DID NOT explode, there was no projectile vomiting!!!  I was still sensitive to the light, but I could handle that.  OMG it worked!!!! and almost immediately too!

After going home, I still continued to chug coffee and laid in bed for the next couple of days….just to be sure.

For the next month or so, I would continue to get migraine like headaches, but they were not positional and could be managed with medication.

While I thankfully no longer suffer from those headaches, I plagued myself with the fear of walking alone.  When I walk in my house, I grab everything, walls, furniture, people.  When I walk outside, I always have someone with me.  What I did was to make myself a prisoner to my fear.

Prisoner no more

If you have been reading my blog posts for the last month, you know that I have been in a dark place both emotionally and physically.  I don’t want to feel that way anymore!

So I started to force myself to “hit the road” again…. God let’s hope not… I mean walking again.

 

There are flashlights everywhere

Last week?  I think it was last week, I asked someone to hold the flashlight for me.  I don’t know why I was so surprised by the number of offers I received, but I  was genuinely and pleasantly surprised.  Thank YOU for that!

In my post I talked about how I don’t do “feelings” very well, and that I was going to take some time working on that.  What I have discovered is that I am not very nice to myself.  My ‘inner’ voice says the most atrocious things to myself.  I call myself fat.  I call myself lazy.  I call myself mean, and to be honest, I am very mean TO MYSELF.  “you should have done better , Why didn’t you try harder? You should have been able to fix that!!!”

Did I mention pretty fucking mean?  The thing is the things I say to myself, I would never say to another human being.  EVER!.  So why is it ok to say it to myself?!?!?  I’ve been spending the last week trying to find the answer to that question, and I have come up with…. IT’S NOT OKAY!

That’s as far as I have gotten with my observations.

I am very mean to myself and IT IS NOT OK!!!!!!!!!!!!!!!!!!!!!

I have tried the whole stand in front of the mirror and telling myself that I am a warrior thing, which resulted in my spitting toothpaste on the mirror.  When I finished cleaning that up, I did realize that I was laughing.  I also came to the conclusion that laughing makes up two of my strengths.  1.  I have a good sense of humor.  AND 2.  I am able to laugh at myself.  Those are both good qualities to have.

A third “positive affirmation” that I was able to come up with, is that I am good at making people feel good about themselves.  It truly makes me happy to watch someone grow and stand taller.  I need to spend more time thinking about how I do that and apply it to myself.

Before I go, I want to thank you all for your comments and messages, it really does help to know that I’m not alone here in the dark.

Will you hold the flashlight?

So Yeah, I’m in a really dark place right now…. I chuckle as I say that because I think it almost goes without saying if you have talked with me recently, or read anything that I have written in the last month or so.

So now what?  What’s next?  What’s the plan?  How do I fix this?

I’m gonna stay right here for a little while and just be.  I am going to let myself FEEL each emotion GOOD, BAD, or UGLY and NOT judge them.  I am also not going to give myself a time limit on this.

I have mentioned before that I don’t “do feelings” well.  When I ‘mention’ it though, I say it offhandedly or in a joking matter, as I immediately begin looking for the next task or chore I am supposed to complete. (anything that I can do to “get out of my head”)

Over the last couple months, I have tried eating, drinking too much, smoking more, taking xanax and sleeping as much as possible.  If you have tried these things you know that they don’t really help, and are a temporary fix at best.  In fact, usually as in my case, they cause more problems.

So for now, I’m done running.  I need to sit in the dark a bit and just be, without a time limit.  I am, however, asking for someone to ‘hold the flashlight’ as I let my eyes adjust to the darkness that I have let consume me.

As I get ready to hit enter, I am acknowledging that I feel Fear.  I also feel vulnerable, and kind of weak at the moment.  I know these feelings will pass, but they are there.

Anyone need a Lyft?

MEET JESUS, our first Lyft driver in Boston.

This guy alone sold me on Lyft!  When he pulled up to pick us up, he got out of the car with a big smile on his face.  He immediately offered to load our luggage in his car, listened intently as I told him this was my first experience with Lyft, and even opened the car doors for us.  He was more than willing to answer my never ending questions about how he started driving,  AND he let me dust off my spanish speaking skills.

Sidenote, but I still think it’s an interesting story…

When we were talking I said “despacio por favor, soy gringa” (which can be translated as slower please, English is my first language)  That got the desired response and he laughed.  He went on to ask if I knew why I would be referred to as gringa or gringo.  Honestly, I had no clue, it was something my spanish professor told me to say, when I couldn’t keep up and I went with it.  So I asked, “No, why?”   He said, “Well it goes back to the Mexican American War, when the American troops (dressed in green) were returning to the states.  The Mexican people were saying “Green….GO home”, thereby Gringo….  I did spend some time googling this, and did find this listed as ONE reason (among others).  I don’t know if it’s true or not but like I said still a good story, and fun conversation.   I Did I mention Uber can kiss my ass?!??!

Our plans for the day

Figuring I would be wiped out after our exploring and knowing that my dumbass had booked another “at the crack of dawn” flight for our return to Chicago the next day, the only thing we actually confirmed for Saturday was staying at the Hampton Inn by the airport.  The hotel had a restaurant, bar, indoor swimming pool, and offered a free shuttle to the airport.  DEAL!  So we had Jesus, drop us off at the hotel.

When the whale watch cruise was cancelled for Thursday, they offered us tickets to come back on Saturday for a 2:30 pm cruise. After seeing these pictures on their website, how could you NOT want to see them?…plus we could stop at Legal sea food again, and grab some more chowdda….

Another trip with Lyft

While this guy wasn’t as talkative as Jesus, he did have a really Sexy Car and I told him so.  I also said,  “I will give you a really good tip if you can put it on TWO WHEELS”.  He punched it, and it was AWESOME!… He also surrendered control of the radio and the best part…. was the light show on the floor….

Of course I took his picture too. AND gave him a good tip.

2nd uberTo be honest after that ride I didn’t really care if we saw the whales anymore…THIS was definitely the preferred method of transportation.

We stopped in at Legal seafood, grabbed some chowdda to go, and waited on the wharf to board our “cruise”.

This is the best video I was able to get of the whales  (which to be honest isn’t saying much)

Part of the reason I wasn’t able to get many pictures is because the whales were free, not captive and on display somewhere. I guess they didn’t “feel like performing”.  pink coat lady

The other reason I wasn’t able to get many pictures is because “pink coat lady” couldn’t keep her arms down.  I get that she was excited, but I was getting angry that she was EVERYWHERE, well at least her pink arms were.  I am still not sure if the thought of pushing her overboard was only in my mind or if it snuck out of my mouth, but either way I needed to get away from her.

Living in Illinois (surrounded by corn), I don’t have much experience with boating or being around water in general so although I was disappointed about having higher expectations, I am still glad I went.  Before I surrendered to the warmth of the cabin, I was able to capture a video of this dolphin swimming alongside the boat.

By the time we docked, I was done.  Boston was definitely beautiful and I had a great time, but if we are keeping score….it kicked my ass.  I really am a country girl at heart.

We had a really delicious meal at La Famiglia Giorgio’s , headed back to the hotel, and pretty much went right to sleep, never enjoying the pool or bar.  I know that we took a Lyft back to the hotel, but I couldn’t even tell you if it was a man or woman driving.

last supper

This is what was still on our plates AFTER we had finished eating.  Basta Pasta!

Will I ever go to Boston again?  MAYBE in warmer weather, with MORE time, and on someone else’s dime.  ( I was able to cover my entire trip, excluding food, with all the points I have accumulated from using travel cards)

The guide books call Boston the “walking city” and with MS my walking isn’t going to improve so for now I will just be grateful for the things I WAS able to do….oh and next time I would take a map…. I relied way to much on Google Maps, which if you look at the bottom of this picture, was very unreliable for me.   Can’t find a way there?!?!?!  SMHno help

 

 

You’re doing what? With who? Where?

Phone conversation with Thing One:

Grace :  “While I am in Boston I am going to meet a couple of friends that live in the vicinity whom I met in the blogging world.”

Thing One:  “OK, mom, don’t forget the “proof of life” pictures.”

Grace: “you got it kiddo”

Friday, April 6, 2018

proof of life
Grace Fullnot….last seen wearing pic

Grace:  Good Morning kiddo

Thing One:  What’s wrong?

Grace:  Nothing, just sending you proof of life, Bill will be here in a few minutes to pick me up.

Thing One:  Why aren’t you smiling?

Grace:  Seriously?… Because I am freezing my ass off, and besides I wouldn’t be smiling if I was kidnapped 😛

Thing One:  I’m gonna need another picture

smile
The things you do for your kids….

Grace:  Better?

Thing One: 😀

SMH….for those of you who don’t know…SMH is Shaking my head.  (I really do that A lot!)

narrow streets

 

 

 

 

Superman was supposed to pick me up by 10.  I’m expecting a little Honda Civic to pull up…. he tells me when he’s on his way that he will be driving a truck instead…..ummmm……. itty bitty roads….

“Let me know when you’re close, I might have to meet you on the corner?”

Before I knew it, ( early even ) there he was loading mine and my companions suitcases in the truck.   Bill and I were heading to Salem for the day, where we would be meeting Karyn and Steve after exploring Salem for a bit.  My traveling companions were going to Pax East at the Boston Convention Center, and we would meet up again at a new airbnb apartment near Salem for the night.

Superman Really Does Exist

superman
To keep his identity a secret…this is the only picture of him I will post

Before we ever decided to meet in real life, Bill and I spent hours on the phone.  (not all at one time, though he did provide a big shoulder when I was struggling with Sara’s death) but we’ve talked about our illnesses, our common expression of saying, “are you really sure you want me to answer that?” when people ask for our opinions, and so on and so on.  Not only is he a great writer, but a great friend.

The real reason I am not posting his picture, is because he wasn’t feeling well and hasn’t been for awhile.  That’s HIS story to tell though, if you want to check it out.    As I said, he is a great writer, and just an all around great guy.

After eating breakfast at a little restaurant in Salem, we wondered around to find the Salem Witch Museum (my choice, not his)

I’m not going to say much about the experience, because hearing about the amount of hatred that people endured during the witchcraft trails still gives me the chills, but I did want to share this postcard.  The last room of the museum  is painted with the words on the postcard….. Very thought provoking!

Of course it was snowing in New England…AGAIN

snow in new england
Just flurries though for the time being

Let me tell you a little bit about the other two bloggers that I got to meet.

First of all there is Steve Markesich

grace and steveOf course you can read his About ME page, but I want to tell you about the man I met.  I’m not sure exactly how our path’s crossed.  ( I think he was doing the “my publisher said, I need to add as many people on social media as I can for the book I am writing thing”)  Either way, Steve’s is the first blog I ever started following.

I love the honesty, openness, and determination he displays when he writes about living with Primary Progressive MS.  MS is a nasty monster, and while I would not wish the disease on anyone, it is good to know you have people like this with you on this scary ride.  Poor Steve has also become a dear friend (didn’t know what you signed up for did you?”)  Please take a moment to check out his blog MSich Chronicles.  He does a great job of sharing how he overcomes the challenges that MS has laid at his door.

I had the privilege of meeting Karyn who writes Karyn’s Domain.

grace and karynKaryn and my paths first crossed around the time she wrote this The best blog I ever read.   She sent me a message saying that she had found my blog after reading Superman’s posts in their entirety, and looked forward to getting to know like minded people….

As many of you know lately my life has been filled with Drama, drama, drama, and I haven’t had much time for keeping up with ANY blogs, but the day after we met, I went to her website and saw this post.  (Honestly at first thought from the meme, I thought she was talking about me….lol).  This woman quit her job, and hiked the Appalachian trail!!!  How can you NOT want to know more?!?!?!  Actually , there is much more to Karyn, I encourage you to follow her on her journey as she discovers where she is headed next.  I know that I will be.

I would like to tell you that our “little get together” lasted until dawn and that we all just barely escaped being arrested for a noise disturbance.  But to tell you the truth…. we got together and just talked…..and it was perfect!  (in hindsight, they might have brought duct tape for MY Mouth)

Thank you all for making the trip and spending your time with me.  I look forward to our ongoing friendships!!!!