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.

 

Always an Adventure

I don’t even finish one adventure before I start looking for or planning the next one.

While we were in Boston, K was constantly on the phone with her husband trying to figure out the logistics for their relocation to Texas in July of this year.  Before I knew what I was doing, either alcohol or I said, “Just rent a fricking truck or trailer, and I will drive.”…..”NOW, will you get off the phone?!?!?”….and that’s how it all started….well at least that’s how I remember it.

Fast forward to last week….

I got a message from K’s husband D, “Were you serious about driving the truck to Texas for us?”…. I responded, “sure, as long as you get me home when I’m done.”  (I don’t THINK I was drinking that night)  Anyway….guess what….. I’m going to Texas!!!!!…. um next week……

and that’s not all…..

While I am in Texas, I am going to meet my friend ‘Ghost’s’, girlfriend Jackie.  Do you remember me talking about Ghost?  He suffered a stroke at the end of November, and most of my communication with him since then has been through his girlfriend Jackie.  In the back of my mind, I had been hoping to make a trip to Florida to see them and some other friends later this year,  but I haven’t set a date yet….

Wait a minute Grace, you just said you are going to Texas, but they live in Florida, you’re going to Florida too?……  NOPE!….Jackie will be in Texas the same week I am, so we are gonna meet for coffee.   What a small fricking world huh?

but wait there is more….

While I was pricing airfare from Houston to Ohare, I discovered (yes there was alcohol involved again), that it would actually be cheaper for me to fly to vegas and THEN home….. hmmmm Vegas….my best Friend Gary lives in Vegas, and it’s been a few years since we have been in the same room together…..

Ok truth be told, I am geographically challenged, and honestly thought that Nevada was directly North of Texas, so why not “stop in” and say hello.  It was just lucky for me that when you travel at the butt crack of dawn and use carry on luggage only the cost for two one way tickets was cheaper and timing was better for pick up and drop offs than a flight from Houston to Ohare…..

I know that this story has been all over the place (literally) so let me recap, before I continue.  Next week, I drive a truck in a convoy with friends to Texas.  While in Texas, I meet a friend from Florida who will be in town. Then I fly to Vegas to stay with my best friend for a couple days …..AND….one more thing…..

I get to meet Paige from Page’s of Paige A couple weeks ago, Paige posted that she will be moving to Vegas in the near future.  Ever since I read her first post, I have wanted to meet her.  This kid has some spunk.  She is constantly challenging herself to try new things, and although I call her “kiddo” she is wise beyond her years.

I think I have said it 10,000,000 times before, but in case anyone missed it…. I LOVE meeting new people, and I am always looking for a new adventure….keep that in mind if you are ever heading this way, or let me know if your couch is free for a couple days, just remember that I am that friend……

that one friend

Oh and the next adventure in the works is one more stateside trip this year and Italy next year…whoot whoot

MS Cog Fog, Slump Week, and Grieving

2 coffee makers

Have you ever had a night out drinking and then next morning “replayed” the events from the previous evening in your head? You try to fit the pieces and events together but you know you are missing parts…Everything is a little blurry…. I am doing that now, but not because I was drinking…. I wasn’t.  No xanax, or other mind numbing medications.  But the “blur” is there.

I don’t know which one is to blame, or if its a combination of all three, but I can tell you it was rough, and maybe a little dangerous.  That was yesterday, I’m hoping that I am better prepared for it today.  I have identified the problem, now I want to ‘laugh’ at it and try to prepare for today a little better. (plan for the worst, hope for the best?)

My new coffee makers ( yes two of them) arrived yesterday, and as I sit here drinking my 3rd espresso, I would like to review yesterdays events.  YAH COFFEE!!!! but more about that later.

I remember being woken up at 5 am to take Einstein to work.  I know that I walked on the treadmill at some point.  I remember thinking no workout today because my arms and abs still hurt from the abuse I had given them the day before.  (I think I only ‘remember’ that because they still hurt today….doh!)  I also know that I was on wordpress and facebook a bit, because the notifications and time stamps tell me that I was.  (I honestly don’t remember though)  Did I mention I wasn’t drinking?!?!?
I went to Aldi’s yesterday to buy eggs.  Only eggs.  This I do remember because I had a long discussion with myself that I didn’t need to use a cart for balance, I was only getting one thing and I COULD do this!… I make it to the back of the store, grabbed two dozen eggs, cradled them in my arm like a baby, and made my way to the checkout where I just stood.  I never put the eggs on the belt.  I stood there having the meaningless conversation with the cashier, “Hi, how are you?” etc.  The problem is I stood there for 5 mins, just holding the eggs.  “Oh Shit, I should probably give these to you huh?” I asked.  He smiled and said, “Nope I got you, $2.12.”  I remember that too.  I remember the price of the eggs, but I don’t remember driving home, putting them away etc.

At One O’clock this heavy cloud/weight settled on me.  I felt like I was going to pass out.  Not because I couldn’t breathe panic attack style.  I just couldn’t….. anything.  Well that sucks… I needed to pick Einstein up from work in a couple hours.  MORE COFFEE!!!! Fold the laundry? Somehow you must stay vertical!!!!  Yeah that didn’t happen.  I passed out, sitting up folding laundry.  I woke up 2 hours later to the sound of the 4th call from Einstein….”Did you forget me?!?!?”

OMG!!!!  YES I did!, I mean NO!…oh shit…. Sorry, I fell asleep…… I’m coming!!! I went to the bathroom, tripped over the coffee table, put my shoes on and ran out the door.  ARGH… I don’t take naps, I am NEVER late, in fact, if I am not 15 minutes early people begin to worry……smh

While I didn’t HURT myself or anyone else yesterday, I wasn’t there.  (Although, I did almost hit Einstein with my car for the 3rd time in his life.)  Yes I did just say that I hit him with my car 2 times, once WAS intentional the other I claim is his fault.  ( If you remind me, I will tell you about it in a couple weeks, it’s not a horror story, and it’s something we all laugh about, NOW)

So TODAY, I am prepared for the worst.  Einstein took my car to work, so I don’t have to leave the house until visitation tonight.  My only plan is enjoy my new coffee maker, and just be.  I am giving myself the gift of no expectations until this evening.  When all I have to do is show up.  My girls are going to the funeral home with me.  My parents are meeting us for dinner afterwards, and then I am coming home.  No lists today!

Tomorrow, or next week, or even a week after that ( Yah Tysabri on the First) I will make another to do list, but for now, for today…. I will just be…..

While I am here though, I want to thank everyone for letting me share my pain and memory with you the other day.  Thank you for your presence, support, and kind words!!!!

 

 

 

My “Dirty Little Secret”…..

I CAN’T KEEP MY COFFEE CUPS FROM LOOKING LIKE THIS EVERY WEEK!!!!

(So not what you were expecting though huh?) 😉

But while you are here, can you help?

I’m serious!!! The first step in getting help is ADMITTING you have a problem.

I have a major problem!!!!  Not only with dirty coffee cups, but with coffee in general, I am an addict.  But let’s start with the smaller of the problems….. my coffee cups.  This is disgusting!  The sad thing is, the cup just came out of the dishwasher.  (maybe I need a new dishwasher?!??!) That would incredibly suck because, just this morning…..

Another one bites the dustanother one bites the dust

This is my second coffee pot funeral this month!!!!

Each day, I rinse my coffee cup out with warm water, and load it into the dishwasher.  (On the average, the dishwasher is run every other day).  After a week or so though, my cups look like this.  I don’t understand how that’s even possible.

About one month ago, Einstein told me I was “doing it all wrong”, and to prove this, he filled all of our coffee cups up with hot water, and let them soak in the sink for a couple days (periodically refreshing the hot water).  YES I was mad that I couldn’t use the sink for 2 days, OCD remember? BUT, after spending over an hour scrubbing them out with vinegar, baking soda, AND a toothbrush the month before, I was more than willing to let him SHOW ME “what I was doing wrong”.  (I did take pictures of him doing it his way, and I do believe he used more elbow grease than he let on, but either way the cups came clean….. FOR A WEEK!!!!!!)

Fast Forward to THIS MORNING.  Not only could I not find a CLEAN cup, but another coffee maker bit the dust.  😦  I really wish someone delivered coffee in my neighborhood since I shouldn’t be allowed to drive, let alone SPEAK, until I have at LEAST a cup, but no such luck.   So now, here I sit with freshly scrubbed coffee cups, and no coffee maker.  cups are cleanI have ordered yet another new one from Amazon, though in reality I will run to Walmart and buy a ‘spare’ within the next hour. (Starbucks made a killing from me this morning)

But how do I keep my coffee cups from looking like that?!?!?!?  Any help, tips, etc would be most appreciated!!!!!!!  Ok tips like “stop drinking coffee” or “don’t make it so strong” will be considered offensive and I may have to kill you…only real help please.

coffee pic

 

 

 

The Morning After….”THE VIDEO”

Yesterday, I posted a video I did as a self challenge to put myself out there and face something I was terrified of.  I didn’t watch the video again until today and this morning “Pre-coffee” I made another one after I finished watching the first one.

For anyone wondering “Pre-coffee” should have a clinical definition and be categorized as some other kind of disease.  ( At least for me it is)  I am not a doctor, so I won’t attempt a clinical definition….. but picture this….

Or check out other pins I have collected .  If you have any to share, please add them too!!…But I digress….I wanted to share some things I have learned both about myself, and about making a video, just from doing that ONE VIDEO….. Caution though…the following video was made PRE-COFFEE. (ok while having the first cup or I wouldn’t have been able to turn on my computer)  But as usual I digress…

Here is my second video if you want to see

Other things I learned from making the video:

  1.  How to upload a video
  2. I really DO NOT Enunciate ( which is why I attempted to add captions) to this one… not perfect, it’s alot of work, but yah I learned something new.
  3. I HATE  the way I LOOK and SOUND precoffee
  4. My goofy first video encouraged someone that I consider a VERY SUCCESSFUL blogger to try something she has been putting off…. DOUBLE WIN!!!!
  5. I’m gonna keep “doing me”.  I know that If I did this or that when making a video, it would be more successful, but baby steps for now.
  6. Drink coffee before EVER attempting to blog or video

Ok Now I’m just rambling…. Thank you again to everyone that is following me on this adventure!!!! I am really enjoying it and learning lots of new things!!!!!