Believe me, it’s not as glamorous as it seems. Now, if I had Gerard Butler fanning me and feeding me chocolate covered strawberries, that would be okay!!
Hello Gerard!!
The reality is not so lovely. Hubby says no design table or being out in the front until my legs stop swelling. I know he’s right, but I’m not happy about it. My mind is clear, but my body is in pain. This is when it sucks to be me. Mentally I can do anything, but when the body won’t cooperate it’s no bueno! 😦 There are only so many movies to watch and books to read. I’ve heard it said that only boring people are bored. SORRY, but that is bullshit! My boredom comes from my MS and being trapped in my own body. In my mind I can get up and go, my body says nope!
It’s during these times when I have to find my inner strength so I don’t fall into a deep depression. Finding it sometimes is a hard thing to do. Eventually, it shows up…
So, here I am in bed, with my MAC [only link to the outside world], my TV, and 3 of my fur-babies lying all over me. I guess I should be happy…they are actually sharing THEIR bed with me! 😛
Wow, that’s what I feel like right now. Legs swelling, migraines, tingly all over my arms. This is the price I pay for doing what I love; making jewelry. Seriously…
When I make my jewelry I sit for hours at my design table in the front. Long periods of sitting wreak havoc on my body. I know, must sound strange since I live my life in a wheel-chariot. The difference is, when not making jewelry, I switch positions a lot. Lie in my bed legs elevated, switch to my chair for a bit then back in bed. Now, I know I could take breaks, but once I get in the ‘mood’ nothing can break me away from my table. I can’t start something without finishing it. Type A here people! Being ill didn’t change that, just makes it harder for me.
I was making things non-stop from Tuesday thru Friday. Friday night it started. My left leg looked like a watermelon and my right arm and shoulder pain brought me to tears. Thank God for Norco and Soma! 😉 No real sleep that night and Saturday was not much better. Did a few things then hubby said enough. I knew I must have felt bad as I never listen to the hubby! lol Sunday the arm/shoulder pain was gone [phew], but the fucking migraine would not go away!! Spent the day in my bed, legs elevated, and highly medicated. Got in trouble as I have to get on the net, even if it’s just for a few, to post and share animals in need. Hubby knows not to tell me no to that! 😛
Well, here’s Monday… Supposed to go for my 9th Tysabri infusion. Legs still have swelling, migraine still lingering and arm tingles came back. Now waiting to see if my liver count is ok to continue the Tysabri. Hopefully they’ll call me back. As it stands I go Friday I’ll find out. JOY!
BUT…
Did get some new things going on in my shop, so it’s not all bad!
As some of you know I am re-vamping my jewelry shop. I’m starting to sell off beads and findings and things at my supply shop. I’ll be making glass pendants and wire wrapped bracelets now. Intricate beading is much too hard as my hands have a bitch of a time hanging on to the tiny parts.
I have been so excited as I thought of another type of jewelry to make for my shop, stamping. I purchased an amazing set to get me started.
FUN!! Not so much...
Well… here’s where the other shoe drops! I can’t do it. I’m not strong enough to hammer the lil buggers hard enough to get a good indentation. WTF!!! Every time I get all positive and excited something fucks it up! Mainly, MS fucks it up! I even tried a heavier hammer to no avail. If I go any heavier I’m afraid I’ll pound off my thumb. 😛 And stupid me bought more blanks BEFORE I tried it out. DOH! I really felt that I could do this and expand my jewelry design. I was all stoked and ready to do awareness pieces…hmmm!! Oh well, I won’t give up right away as I can be relentless. Just don’t expect to see any of this type of jewelry any time soon…
Love these people!!Sabrina, dd Shelby, and RogerThe Fabulous BobbiHandsome men!!Some of my favorite girls!!Love these peeps!The Three Amigos! 😉YAY!!!!The most awesome Mascot!
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!!
Gorgeous birds!!FamilyGet to walkin'All done and medaled up!!
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!
Truth!
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! 😛
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!
hiding...
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.
Yup it’s that time again. I seriously have slacked off this year with the promoting of the walk. My walk is this Sunday, April 15 at the Rose Bowl.
I roll so no one will ever have to hear the words, “You have MS!” No child should have to watch their mommy slowly lose her abilities. No child should have to see their mommy be taken away in an ambulance. No mommy should have to explain to their children why she can’t get out of bed, why she can’t drive them places, why she can’t play with them. (Daddies and others also have MS, but this is what has happened to me) MS is a family disease, not only the person with MS is affected.
My fabulous team, Tracy’s MSKateer’s, is comprised of the best people ever from NBC/Universal. Best looking team too! 😉
If you are able to help, please click on the banner below and donate to help find the cure. If you are not able, please share my page and/or blog as maybe someone you know is able to donate.
Click the banner to go to my page! xx
I hope for the day when I can get out of my wheel-chariot. If that doesn’t come for me, I hope with research no one else has to ever be in a WC again.
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
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]
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!!
Making it Through the Rain 