Category: RANDOM

Multiple Sclerosis · PAIN · Ramblings · RANDOM

OMG, he’s cuttin’ my neck open…

Tracy16 Comments

That was my reaction when my port was put in a few months back.

Let me backtrack a bit. In February I had a port put in my chest. With the monthly  2 hour Tysabri infusions it was the best option. Me ole veins are gone and sticking me each time was getting painful and harder to do. So cool, a port, a lil contraption with a tube under my skin in my chest going in to a vein. Easy peasy, right?

First problem when we get there is no ‘twilight’ sleep or meds, as, well, no veins for an I.V. Hence the need for the port. But it’s all good! The area will be numbed up and I’ll get a shot of Ativan [not that it would work on me]. I finally get wheeled in and the doctor comes in. He looks at the area for the port, then lifts the cover from my face. He says from his charts he assumed I’d be older but when he saw my skin and how ‘young’ it looked he had to see me. ummm hmmm smooth talker! lol Meanwhile Ativan not kickin’ in… they proceed to give me some injections in my chest to numb it up! OUCH! But then he injects my neck!! Um, WTF why are you injecting my neck. **shivers. Meanwhile Ativan not kickin’ in… He starts the incision into my chest, no real pain just pressure. Then I feel my neck getting cut. Okay, I speak up. “Why are you cutting my neck?” He asks me if I understood the procedure. I told him that I was told it was a a lil contraption with a tube under my skin in my chest going in to a vein. He explains it in a bit more detail. He tells me how the lil contraption [the port] goes under the skin in my chest, then a tube is brought up through my neck, around and down towards the heart into a vein. Okay then!! I guess it’s too late to turn back now! 😉 Meanwhile Ativan not kickin’ in…

All in all, it wasn’t too bad. I hung out in recovery for a bit and then we headed home. On the ride home… the Ativan finally kicked in!! Go figure. lol

on the way home
BAD reaction to the tape and bandages. owie
today

I figure, dudes dig chicks with scars right! 😛 I tensed my neck a bit so you can see the tube going up through my neck! Cool right. When I do this it freaks out my kids!! lol

Peace out all!

Family · FUCK · Health · Multiple Sclerosis · Quotes · Ramblings · RANDOM · Sarcasm

No more sugar coating it…MS suuuuucks!!

Tracy14 Comments

I try hard to find the humor in having MS, but honestly…NOT funny! For me, the only way to cope is to find the humor. It’s getting harder daily.

To be ‘upbeat’ about it, I do have blessings in my life. I have a hubby who stands by me, 3 fabulous teenagers [yes fabulous and teenagers in the same breath], a roof over my head, food, and the list goes on. Roger [hubby] has spoiled me: mini fridge in my room, microwave, 40″ flat screen, hospital table, MAC, iPad, iPhone, etc. My parents purchased me an awesome king size adjustable bed. So on the outside it may seem ‘all good’. Yes, what a life. I can spend my time cozy in my bed, watching my Crossing Jordan on Netflix, dozing, cuddling up with my 3 dogs, play on my MAC. Joyous, right!

But on the inside emptiness prevails. I’m alone most of the day, no way to just get up and go, have a life…a quality life. I can no longer make my jewelry as my hands drop things all the time. The stress and sadness that causes is unbearable. Yet another thing my MS has taken away from me. Sometimes I think I must have been a real bitch in a previous life! Most people would laugh and say, “In a previous life?!!” 😛

So how do I cope? Never said I do, I just keep on breathing. I’ll never cope too much has been taken from me. Being primary progressive is a slow drawn out death. When dx’ed in 1997 [finally] I have gone from a cane, AFO’s, walker, manual wc, to a power wc. The fatigue is paralyzing. And fatigue and being tired are two separate issues. Being tired, I can sleep. Being fatigued, I just lie there, empty and alone.

please no more

I’m feeling all of this right now as new issues happening yet again. I’ve tried many different meds. All of which did not help or caused other problems. Now, the Tysabri, may have to be stopped due to a rise in my liver counts. We will find out next month. Two blood test have shown a rise, if the third does, yet again, another med bites the dust. After awhile you feel like ‘why the fuck should I keep trying!’ With every new issue it feels like another part of you has died. The mourning period starts.

I know, I know, “Poor me, pour me a drink!” I wish a pity party was that simple. And trust me, the last I want or need is anyones pity!! That just pisses me off. This blogging thing is to help me get it out and down in to words. Trust me, I know I’m no writer, but it’s my blog and I can blog if I want to! HA!!! I’ve not been blogging much as my hands will not cooperate. I have Dragon Naturally speaking and am trying to figure it out. lol My problem is it won’t allow the work fuck!! You know that doesn’t work for me! 😉 Figured I’d blog to let my readers know I’m still alive and hmmm not kicking… you get the idea.

One last lil’ diddy… ‘Be kind, for everyone you meet is fighting a hard battle.’

Off to watch more Crossing Jordan! [love me some Nigel]

Peace out peeps and peepettes!

Anger · FUCK · HELL · Multiple Sclerosis · Ramblings · RANDOM · Sarcasm

Hotel HELL

Tracy12 Comments

In my head I do not ‘see’ myself as crippled. I just see me. Unfortunately there are little issues that pop up to remind me.

Next week we are heading to Carlsbad/San Diego so I can go see my Uncle, the dentist. Finally going to find out what’s happening with my painful mouth. We usually stay with my parents in Carlsbad at their home, but it can be rough for me with no ‘crippled’ access. Roger and I decided we would stay in a hotel nearby with the roll in showers and accessible rooms. We had stayed at the Hampton Inn Carlsbad once before and it was perfect. Now, here’s where the fun starts. I called to make a reservation making sure I could get a roll-in shower room. They said they were booked for those rooms on those dates but had an ADA bathtub room. I explained that will not work for me and he said to try the hotel next door, the Homewood Suites by Hilton. Okay, cool. I thanked him and called. The Homewood Suites had no availability for these rooms either so he said he would call the Hilton Garden Inn Carlsbad. By now I’m feeling a bit nervous and stressed and crippled. All this to get a hotel room? I figured 3rd times the charm, right? Wrong!

The Hilton Garden Inn had roll-in shower available rooms. Woot woot! Not so much. Now we could pay for and ‘reserve’ this room…but…they can not guarantee we will get the roll-in room. Ummmmm, what? I’m paying for the reservation [reserving] the roll-in room, but you cannot guarantee it. WTF! Basically, we can pay for it, but once we get there is may not be available and we will get an ADA bathtub room. Now I’m not only confused but getting angry and tearing up. I ask the guy why the other hotel has the rooms and also has them reserved for the people. [why I couldn’t get one there] He’s sorry but there will be no guarantees for the roll-in room. I explain that if we pay for it and it is not available that I will need to cancel and get my money back so I CAN find a hotel with the room I need. He explains that no money will be refunded as it’s a two day cancellation policy. I then explained that the ADA will not be happy to hear about this.

After a few no so nice, yet adult like comments, I hung up. Wow, I can’t even get a hotel room… I really am crippled! Fuuuuuuuuuuuuuck!

I call my parents and burst into tears explaining what happened. After a few minutes, I calmed down, [thank you Cheryl] regained my composure, and realized I can tough it out for two days in their house. It’s just the bathrooms that cause me stress.

Now that I was composed, I noticed there was a Marriott nearby as well. I figured, maybe the 4th time is the charm and fuck Hilton! 😛

Dialing the number, crossing everything, I call The Courtyard By Marriott Carlsbad. [oh please, oh please] My first question to the sweet voice on the other end was, “Do you have roll-in shower rooms?” She says yes. My second question was, “If we reserve one, will we be sure to get one?” She says yes, they will reserve it and put a block on that room for me!!! HALLELUJAH…HALLELUJAH Really, I heard music! So this  lovely girl made our reservations, blocked the room, and instantly sent me a confirmation.

Marriott - a crippled persons dream! :p

My stress was lifted, my spoons replenished. I will NEVER deal with Hilton again. They may be and have accessible rooms, but they are NOT cripple friendly. Marriott, you are my new love, Thank You!!

Love and light peeps!

Love · Multiple Sclerosis · Music · Ramblings · RANDOM

Wildflower

Tracy1 Comment

This song resonates deeply inside of me. Thank you Laurie for posting on my FB!

My favorite part of the song is…

“Be careful how you touch her for she’ll awaken; and sleep’s the only freedom that she knows”

The whole song means so many things to me..

__________________________________

Wildflower by Skylark

She’s faced the hardest times,
You could imagine
And many times,
Her eyes fought back the tears
And when her youthful world,
Was about to fall in
Each time her slender shoulders,
Bore the weight of all her fears
And a sorrow no one hears
Still rings in midnight silence
In her ears

Let her cry,
For she’s a lady
Let her dream
For she’s a child
Let the rain,
Fall down upon her
She’s a free and gentle flower
Growing wild

And if by chance,
I should hold her
Let me hold her for a time
But if allowed just one possession
I would pick her from the garden,
To be mine

Ummmm………………..
Be careful how you touch her,
For she’ll awaken
And sleep’s the only freedom,
That she knows
And when you walk into her eyes,
You won’t believe
The way she’s always payin’
For a debt she never owes
And a silent wind still blows
That only she can hear
And so, she goes

Let her cry,
For she’s a lady
Let her dream,
For she’s a child
Let the rain
Fall down upon her
She’s a free and gentle flower
Growing wild

Let her cry,
For she’s a lady
Let her dream,
For she’s a child
Let the rain
Fall down upon her
She’s a free and gentle flower
Growing wild

She’s a flower
Growing wild

She’s free…….

Love and Light ~Tracy

Ramblings · RANDOM

A Dog Named Patrick – UPDATE

Tracy1 Comment

For his story click here

For the love of Patrick

I remember when I saw the first picture of Patrick, I knew this poor soul was gone. When I finally got up the courage to look, to my happy surprise, he was alive… barely. AHS had him for the first day to stabilize him then he was of to Garden State Veterinary Hospital, where the miraculous recovery truly began.

The monster, Keisha Curtis, who did this to him, we pray will pay for her heinous abuse and torture to Patrick.

From the Capt. at NJ SPCA:

To All: In answer to the questions of the Plea Agreement, that Plea was rejected by the Defense Attorney representing Kisha Curtis. The Plea Agreement included 18 months in jail, $5000.00 in fines and an animal ban on the defendent. Again this is not unusual and moving forward we are confident that this case was handled properly by NJSPCA and that our case is strong and solid. Capt

——————————————

AHS is still fighting to tear Patrick away from the only loving home he has ever known. Patrick has been with The Scavelli Family during this ordeal. He is loved for the first time in his life and they want to adopt him permanently. Yet, AHS is fighting to have him returned to their shelter/zoo. I thought shelters were supposed to want the best for the animals… guess not this one.

Please sign and share the petition below to tell the courts to let Patrick say with the Scavelli Family!

Let the Scavelli’s Adopt Patrick

To remove Patrick would be tantamount to abusing him all over again! We MUST let our voices be heard!

For more on this part of the case go here.

“The greatness of a nation and its moral progress can be judged by the way its animals are treated.” -Mahatma Gandhi

Ramblings · RANDOM · Sarcasm · Stupid Stuff

Quotes to live by…

Tracy5 Comments

Found this while surfing the net… gave me the giggles! [bold print is my jam lol]

——————————–

Do not walk behind me, for I may not lead. Do not walk ahead of me, for I may not follow. Do not walk beside me either. Just pretty much leave me the hell alone.

The journey of a thousand miles begins with a broken fan belt and leaky tire.

It’s always darkest before dawn. So if you’re going to steal your neighbor’s newspaper, that’s the time to do it.

Don’t be irreplaceable. If you can’t be replaced, you can’t be promoted.

Always remember that you’re unique. Just like everyone else.

Never test the depth of the water with both feet.

If you think nobody cares if you’re alive, try missing a couple of car payments.

Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them, you’re a mile away and you have their shoes.

If at first you don’t succeed, skydiving is not for you.

Give a man a fish and he will eat for a day. Teach him how to fish, and he will sit in a boat and drink beer all day.

If you lend someone $20 and never see that person again, it was probably worth it.

If you tell the truth, you don’t have to remember anything.

Some days you’re the pidgeon; some days you’re the statue.

Everyone seems normal until you get to know them.

The quickest way to double your money is to fold it in half and put it back in your pocket.

A closed mouth gathers no foot.

Never miss a good chance to shut up.

There are two theories to arguing with women. Neither one works.

Generally speaking, you aren’t learning much when your lips are moving.

Experience is something you don’t get until just after you need it.

——————————–

Peace out and have a fabulous day peeps!!

Happiness · RANDOM

It’s a great day!

Tracy9 Comments

I do not have many ‘great’ days in my life. Good days maybe, but far from great. Well, yesterday was a GREAT day. My brother [baby brother] Ed and his wife Kelly brought an amazing new being in to this World. Ed and Kelly have a relationship that I’ve only seen in  fairy tales. I may be biased, but my brother is pretty amazing.

I ‘met’ my brother when he was 6 months old and it was love at first site. He could not say Tracy when he started talking, so my new name became Sissy. I wear that name with pride. I’m sissy to my baby brother Ed and baby sister Laura. I would have it no other way.

And now, a new chapter in Ed’s life. The baby brother I changed, baby-sat, fed, etc. is now a daddy. I’m over the moon. [also feeling really old, lol]

So, without further ado, Welcome to the World Max – born Jan. 20, at 11:52pm. 8lbs 6oz.

he's perfect!

So, yes, this was a GREAT day!!

Love and Light!

Multiple Sclerosis · Ramblings · RANDOM · Sarcasm

Prioritize?

Tracy5 Comments

Do you get overwhelmed? OMFG… I do all the time.

There are so many things that need to be done for my family and around my home. If I were MS free the shit would be over and done with. My family and house would be rockin’! It’s time for to-do lists I’m thinking. I need to put all the things that need to be done in order by priority. Then figure out how to it all…

I do not start out the day with many spoons, so I must utilize them smartly.

Need Spoons!

There is sooooooo flippen’ much clutter in my home that some places are hard to get into with my wheel-chariot. My closet has become ‘here’s where all the junk goes’ central. And, yes, I’m a bit [huge bit] of a pack rat. It’s hard to let go of things. I guess we could buy a bigger house so I can have a ‘junk’ room… Okay, back to reality!! But, that is an idea! 😛

Where to start:

  • get tax stuff together
  • go through closet and get organized
  • get salvation army pick-up together
  • get all my jewelry pieces together and clean design area
  • find someone to hangs doors and add door guards [to protect from wheelchair, lol]
  • carpets cleaned
  • front closet cleared out

Now these things may sound easy to some, and years ago I would have been done in a couple of days. Now, this stuff could and most likely will take a month or more to complete. Now all I have to do is to decide what to do first and how to get it done!!

Decisions…decisions…

Peace out peeps!!