My fabulous team:
Thanks to the best MS Walk Team ever!! Love you all and ty from the bottom of my heart… or the heart of my bottom! 😛
xoxoxo, Tracy
More piccies!!
Tracy’s MSkateer’s – MS Walk 2012
Category: Ramblings
No Walk for the Wicked… err, Roll!
I know I know, you’re all dying to know if i made the walk.. Well, by my title, nope!
My legs are swelling so much and the pain is seeping in. Been lying in my bed with my legs elevated and watching Grimm on DVR. Roger and Shelby went to the walk, which makes me feel better. I’ll get my t-shirt!! 😉 Hoping they get some good photos I can share of my fabulous team, Tracy’s MSkateer’s!
I know I’ve been kind of a bummer in a couple of my blogs… don’t mean to be. Sometimes I get so overwhelmed I can’t shake the blues off of my shoulders. Believe me, I fight them every day. On the up side, even when I’m down… I’ll never stay down for too long!
I’m lucky, as no matter how bad it gets I have the best support system behind me. My family and friends rock and always make me smile no matter how hard the tears are falling. That, in itself, makes me one of the luckiest people in the World! Now if only I could win the Lotto! 😛
Love and Light, Tracy
Where is the rock for me to crawl under?
I’ve been trying so hard to get out out of the ‘whatever’ mood I’m in. I’ve been blogging [duh], updating my jewelry shop[s], tweeting and pinning like a mad woman… but I just can’t seem to shake the blahs. I just wanna crawl under a rock!
Tomorrow is the MSWalk2012 and I’m so not feeling it. My legs have not been cooperating. Even being in a wheel-chariot all the time the legs have issues. I’ve been getting the shakes, and from sitting all the time, serious ankle swelling. Not liking ‘kankles’!! 😛 Kind of sucks when you have to sit and then you get issues from it. **SMH** It hurts when the legs swell and embarrassing when they just start shaking all over the place. Hubby calls it ‘the rhythm’ and always asks if I wanna dance! Dork! lol I’m fighting between dealing with pain and embarrassment, to the guilt feeling of not going. My team, Tracy’sMSkateers are the best. They had a big ole bake sale at NBC/Universal yesterday to raise money for our team. Think they raised over 1000.00!! Woot Woot! I feel like if I don’t go I’m letting them down. I really want to go, but really not a fan of pain. I even bought a cute orange shirt for the walk…
I’m going to confess something I have not really touched on in the past. I hate me! I really do not like going out in to public due to the all the weight I have gained since being in my wheel-chariot. I was once tall [6′] and skinny. Now I’m short [4’4″ in my wheel-chariot] and huge. I have gained almost 60 pounds and I hate the way I look. I try to keep away from mirrors as I get depressed. I will take responsibility that I sometimes eat what I shouldn’t, but most days I eat right. It’s so hard to lose weight when you are immobile. I’m embarrassed by my weight, and prefer hiding out at home. I know the extra weight is not helping my MS either. It truly has nothing to do with what others think… it’s all about what I think. So in a nutshell… I hate what I have become.
A Coffee IV!! Yes please…
This is what I’m talkin’ about!! Perfect for my port! 😛
Srsly… May I please have my bed back!
OMG, he’s cuttin’ my neck open…
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
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!
I’m all the drugs you need!
Thanks to the fabulous Mz. Vicki Day for this! 😉
No more sugar coating it…MS suuuuucks!!
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.
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!
My Trip, err I’m a trip? I do trip…
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.
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.
Have a fabulous Sunday peeps!
Hotel Hell update!!
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!!
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!
PEACE!!!!
Making it Through the Rain 