Roger reminded of the best part of my port surgery… at least the funniest part!
While being prepped for the procedure it was a bit cold in the room. I was being covered and all of a sudden I felt a tad chilly on my right side as if something was hanging out! Well, I knew exactly what was hanging out. 😛 I cleared my throat and asked the tech if something was ‘uncovered’. He quietly said yes. As it seemed he was a tad embarrassed, I explained to him that it was ok. Seriously, since giving birth in a room full of people, my modesty has done flown out the window!!
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 homeBAD reaction to the tape and bandages. owietoday
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
Sometimes I wonder if my rescue babies realize they are safe now! I know I would love to be a ‘dog’ in my home. Take over the bed, get treats and love all day. But, I still wonder if they know how loved they are.
Charlie, Dexter and Chance
“The greatness of a nation and its moral progress can be judged by the way its animals are treated.” -Mahatma Gandhi
This quote is so very true! Like children, we are the animals only voice! My foster fail 😉 Charlie still shakes and goes into the submissive pose. I hold her and tell her that no one will EVER hurt her again because if they tried they would have to deal with a bat toting wheel-chariot mama! WAKE up World, we need to speak for those who can’t!!
nuff said!
Hug and love your pet today and, if you are able, check out your local shelter and save a life today!
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]
Before we left I called the Courtyard Marriot to make sure my roll in shower with bench room was still reserved for me. I was told yes. Well woo hoo… maybe not. Ten minutes later the hotel’s manager called and said their room was a roll in but had no bench. :-O But… the Residence Inn Marriott had one and would be reserved for me. Well cool beans..
We hit the road for Carlsbad late and finally got to the hotel around 10:30 pm. Check in was nice and easy, the rest… not so much. The first place I looked when we got in the room was the bathroom. Yup, roll in shower, Nope no bench and no places to put shower essentials. Ya know a shelf! Roger went to get some ice from the refrigerator and it seemed clogged. When he opened the ice maker there were two Smirnoff Ice drinks, one broken from freezing. He had to take out the ice maker and empty it to make sure no glass was in the tray/box. NICE! Then in one of the fridge drawers the previous customers also left more drinks. Does no one clean the fridge? By now I’m a wee bit irritated. I ring down to the front desk and ask about the shower. They tell me they have a portable folding shower bench they will bring to me. Really, I could bring my own. The attached benches are much more sturdy and safer. I politely declined their offer. WTF!! You would think if you ask for a roll in shower with bench and they say they have one, that’s what you would/should get. The worst part for me, is when these things happen it’s so in my face that I’m crippled in a wheel-chariot! Guess if your crippled, hotel stays are not for you…
BUT, as always, Hell hotel would not ruin my trip.
The next day we headed out to my uncle’s dentist’s office. I was prepared for bad news per the dentist from my area. Guess what, not nearly as bad as the ‘liar’ said. I had a bit of decay [2 small cavity areas] which Greg filled. Then one, not two root canals were needed. We made the appt. for the nest day. Greg also filed down my two top front teeth as they always jetted out a bit on the bottom. Took two minutes and now my front teeth look so cool! Next I had the best teeth cleaning ever. We headed back to the parents house and my sister Laura and her new adorable puppy [Finley] came over. It was a nice night with great food!
The next morning we got up and Roger washed my hair in the sink and I did a hooker bath. Fun… We then took off to the Endodontist’s office for my root canal. As root canals go, it was fabulous. Not a smidge of pain and fabulous people there. It was great. Then the parents took us to lunch…I had soup. lol Next was the moment I’ve been waiting for for 3 weeks; off to see my nephew Max!! YIPPEE.
Baby Max
This made up for the crappy hotel that we will never occupy again.
Max is just a love and the cutest baby ever. Instant love!! My brother Ed and his beautiful wife Kelly did a good job! If fairy tales are true this family IS The Fairy Tale!
All in all the trip was fabulous. Yes the hotel sucked, but I always make it through. The good, however, outweighed the bad; my teeth rock now and I got to hold my and meet my Nephew Max.
After my blog yesterday, the Fabulous Vicki Day tweeted it to @hiltononline. Well soon after, hiltononline tweeted me asking me to dm them. I did, and after a few dms they called me.
The explanation was, to say the least [the very least], comical! Really, all I heard was blah, blah, blah.
The gentleman who phoned was very business like and polite. I’m sure the typical PR guy. The reasoning behind the reservation person saying that I could reserve the room, but no guarantees, was due to… get this, here it comes… natural disasters! You know, floods, earthquakes, even fires. You see if they guarantee the room and this happens then issues can arise. Seriously… do I sound [or look like] I have STUPID written on my forehead? I mean really, if that happens the majority of people would understand. It was very hard for me to keep from lmao and saying something sarcastic.
Marriott had no problem guaranteeing my room.
I explained that I told the guy [reservationist] that if I got there and the room was gone, I would expect my money back so I could go elsewhere and was told, no, there is a 48 hours cancellation policy. PR guy said that if that happened they would definitely accommodate me and find me the proper room I needed. Now I’m confused, do they not train the reservationists? [maybe Paris trains them, oh wait she does nothing] If the RG [reservation guy] had explained the natural disaster problem [roflmao] I would have said okay! But, I know, from experience that the real issue is someone coming in before we get there, needing a roll in shower and them giving it to that person. How do I know this… because this was done for me at the Hilton Garden Inn when my friend and I had a mom’s night away. [now I feel like shit for that] We said we would go elsewhere, but he said, no he could change the rooms. Anything for a buck!!
Like the Hilton's need more money... grrrrr
The PR guy also said he would give me their direct number, and in the future I can call them directly and they will get the manager to make sure I get the room reserved. Just train your fucking employees.
So there you have it! Again, all I heard was blah, blah, blah!
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!!
There are so many times I cannot put my life, my emotions into the right words. In my head it comes out clearly, but when trying to express it into words it comes out jumbled. I tend to use music to to let my feelings known. [as shown in my blogs more than once]
Many of the songs I post will resonate with others who deal with chronic illness’.
Todd Rundgren is an amazing artist and his songs show real emotion.
This is the Music video for Todd’s 1981 song “Time Heals”.
If I’m not mistaken it was the third video ever played on MTV, when MTV was actually music videos… ah the good ole days!
________________________
If you’re bleeding,
Then everyone can see you’re bleeding
They can call for the doctor,
Who’ll provide what the diagnosis says you’re needing
Then he’ll take away your pain
But if your heart,
Your heart has been broken
And you don’t wear it on your sleeve
No one can tell,
Your hell goes unspoken
But there’s one thing you must believe
Time heals the wounds no one can see
Time heals the wounds that no one can see
If you’re crying
Then everyone can see you crying
And they all sympathize
But it just doesn’t matter
Though they may be trying,
They can’t feel the hurt inside
You can’t go on,
You’ve gone to the limit
And your life seems to slip away
You’re on your own
Alone you must face it
And tomorrow’s so far away
You got to hold on baby
Got to give it time to heal
Time heals the wounds that no one can see
You must believe what they say is true
It do’s wonders for ya, yeah, yeah
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
Making it Through the Rain 