Hey, I’m doin alright….

I woke up this morning in a bit of a panic thinking,  “Que dia es hoy”?

I’m not sure why I always ask that in Spanish, but I do.

What day is today?!?!?!?

My brain raced through all the things I have or had to do this week.

Check Check Check.

Deep sigh of relief…

Ah It’s Friday!  I don’t have to be anywhere until 3:15 pm!!!!

I closed my eyes, prepared to go back to sleep, but then it hit me.

Today’s a GREAT DAY TO BE ALIVE!!!!!

I quickly got out of bed and into the wheelchair to head to the bathroom. Next, I wheeled to the kitchen to hit the button on the coffee maker, and finally to the porch to let D.O.G. out.  As I sat staring at the coffee maker urging it to produce faster, another thought popped into my mind.  At yesterday’s appointment with the orthopedic surgeon, I was given the go ahead to begin taking steps as tolerated while in the CAM boot.  I  jumped up and down!!!! (figuratively not literally)

I quickly raced back into my bedroom and took off the surgical shoe that I sleep in, and donned the knee high cam boot that I used to abhor.  THEN

I STOOD UP and took a step  WOW that hurt!!!

I sat back down in the wheelchair and headed back to the kitchen for Coffee.  (That was two hours ago and I’m still on a It’s a Great Day to be Alive High)

Yes the foot thing is great news, but to be honest it’s not the reason for the high.  My non drug induced High is because I survived a really rough week and lived to tell about it.

I almost thought about turning on the video camera to tell you about the week I have had, because I can talk so much faster than I can type,  But 1 I need a shower badly and 2 I think I am so Happy the words would come out too fast and they wouldn’t be comprehensible anyway.  So instead, I would like to give a brief summary of the week and go into more detail in the future.

Monday

I had surgery for Botox injections in my bladder.  For the first time ever, the anesthesiologist let me stay awake while they finished setting up in the OR.  I have had this surgery at least 2 times a year for the last 10 years, and although I have asked repeatedly not to be put out, I’ve never made it awake longer than a few minutes in the Operating Room.  Spoiler Alert…this MAY be the last time I have to have this surgery!!!!! (More about this next week?)

Tuesday

I woke up on time for my scheduled hearing with the IL Dept of Public Aide!  (That in itself was impressive considering I didn’t get home from the hospital until 9:30 p.m. Monday night)  I have been FIGHTING with the state for many years and finally requested a hearing to resolve the issues.  Spoiler Alert… MAYBE it worked out in my favor?

Wednesday

This was Not my day.  I mean I was not the patient on this day.  I think I have said numerous times that I would rather “take the hit or the pain” than to have my loved ones have to feel it.  Today was my Dad’s day.  I’m still not sure what is appropriate to share about my father’s condition so I will be brief.  Over the last year and a half, my father has been having numerous issues with his vision.  Together we have seen more than 10 specialists looking for help and answers.  While the ‘mystery’ is not solved, Wednesday we received some hope.  I’m gonna leave it there and hold onto the hope awhile longer.

Thursday

I mentioned that above.  I can begin walking!  Since I began writing this post I have taken a few steps.  I’m weak and wobbly, but a step forward is good one so I will take it.  BABY STEPS!!!!

Completely random subject change here… My grandsons have begun taking their first steps while holding onto or pushing things!!!!!!!!!!!!!!!!!!!!  Super exciting!!!!!

Friday (Today)

2 MRI’s at 3 :15.  Although I’m not looking forward to the tube, Thing 2 will be taking me and it will give me more answers to what my next step (see the funny) with my MS will be.

So yay! Today is Friday and it’s a GREAT DAY TO BE ALIVE!!!!!!!!!!!!!!!!!!!

For the off chance that anyone is NOT having a Great day, give this song a listen to, and see if it perks you up a bit.  (It’s actually my Not having a great day song, but it does pump me up.) It’s a great day to whoop somebody’s ass!

Happy Friday Everyone!  See you next week!

 

 

 

 

 

 

 

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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?!?

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……

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

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 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.  I 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.