Since my last surgery in May this year, Im actually becoming “Tracy” again. I’m gaining back some strength and actually getting out of my ‘prison’ occasionally. I know I’ll never walk again, but if I can transfer on my own I’ll be happy.
this makes me happy!
Now here’s the kicker…when I start feeling even a tad bit good, I tend to over-do-it. Badly… I want so bad to be ‘me’ again I push it too far.
Some say the face of MS is invisible. For the majority of people with MS it is considered the invisible disease. But, for 5-7% of MS’ers I’m also the face of MS. The face no one wants to see or think about. Bedridden, wheel-chariot user, pain most can’t comprehend, and my MS list goes on. I’m the dreaded [badly] progressive form. So when I feel ‘good’ I want to do all the things that get put off. Then I crash and burn. And alas, I’m crashing.
I will get the rest that I need for a few days. I pray it’s only a few days. My last crash landed me in Hospital and then a 3 month depression. People, even some MS’ers, can’t comprehend the terrible pain and loss I have had. I hope with all my might they never have to.
Today I knew a ‘crash’ was coming, but I will no let it kill my spirit as I have in the past. Shit, my friend Stephanie won’t let me. Right this minute though I feel like I’m losing my mind. And, yes it’s spelled losing, NOT loosing! A huge pet peeve of mine. Sorry, I went off track a smidgen. 😉 My sleep is back to noooo sleep tonight. Muscles spasms and shakes are taking over my being. I think Aliens are coming for me to do some probing. Although, that may be fun…hey, it could happen. Now I really am losing it. Lack of sleep will make you insane. Trust me I’m there.
it’s all I have…
Now I will sit here in the dark with the light of my MAC illuminating my room. Will I ever find my peace, my center? I do not know. But, I will always be searching for it.
It’s been one of those long strange days. The Red Bull didn’t help either. Figured since it helped my fatigue yesterday, it would help again today. Not so much… Woke me up but good, with the shakes and jitters. Trust me I get those without the Red Bull… With it was like being on meth, or so I’m told! 😛 Never again. I love the taste as they have that smarties candy thing going on. But, never again.
I did get a new necklace listed at my jewelry shop and some more supplies up at my supply shop. Guess that’s a good thing. Doing anything I can to shake the blues.
My weight is taking its toll on me. No matter how good I eat I’m staying the same. At least I’m not gaining anymore, right? I’m not liking this being ‘heavy’ thing. It’s new to me and I know if not for the fucking MonSter, I’d still be thin and active. I try so hard to find the good in everything and take it all in stride, but nothing seems to be helping. A tummy tuck and boob reduction might help! 😉 I need to find a sugar daddy…
I know… blah, blah, blah!! Well, before I break out in to song, I’ll leave with something that is totally the snarky me:
So we had our debut of ‘The Padded Room- unlocked and unplugged’ and we actually made it through. We do need to work on the sound for us, as we have gotten feedback that we are a bit hard to hear. Ruby is soft spoken, so why she is hard to hear. She is the soothing voice behind the padded room. I’m, well, not so soft spoken but even I came across low at times. I cannot hold my phone for too long as my hands go numb and get weak, so I need to find a good quality telephone headset. Add one more item on my list of things to do! lol But, all in all, we are proud of the job we did and cannot wait for our next show…April 8, 2010 on the Real Life Radio Network at 1 pm Texas time!
The Ladies of the Padded Room
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After getting some things done for the show, and skyping with Ruby, I started feeling a bit out of sorts. It was like a light bulb going off in my head…I had forgotten to take my anti-d for 2 maybe even 3 nights. Soooooo not good. And nutty me, we just discussed this on our debut show about depression and medications. It was one of those ‘slap me upside the head’ moments. So duh me!! Now I am back on track and hope to not forget again. I even bought a morning/evening pill box for my meds. I’m thinking the key is to actually add the meds in it and take them on time. Ya think! rolfmfao
Then, the coolest thing…my Sybil doll came.
The Padded Room Mascot
It’s kind of hard to tell as it was a quick pic, but she is wearing a straight jacket. So awesome. She is one of MANY dolls from the Living Dead Dolls line. I now have 5 and am hoping for one more.
My girls....
Click to enlarge the pics. They are dead and needed someone to care for them. Who better but me!
hehe
My newest Pic for The Real Life Network
Urban billboard baby!
Talk about ramblings…
Maybe my meds are kicking in and it is time for me to fly!! Love that REO Speedwagon song, don’t you?
The hubby is ‘softly’ snoring, kids talking as quiet as kids can, and I cannot sleep. So I am here to ramble…
Do you ever feel like something is missing, or you forgot to do something important? I HATE that feeling! I am not one to forget things, and yet lately I forget everything. My MS is messing with my cognitive skills, and that pisses me off more than losing the use of my legs. Shit, even more than incontinence issues. I actually forgot to pay two bills in the past months. That is so not me. Thankfully we are never late and I got out of late fess. Get this, I even have reminders…and i still forgot. It’s the damn ‘some-timers’; sometimes I remember, sometimes I don’t! 😛 So, if anyone out there knows what I am forgetting to do, please let me know. rofl
This blog may be out of sorts, as I have no clue about anything. My girl Ruby made it through her 11 hour back surgery with flying colors, so no more worries there. Christmas is over and it was good, but YAY it’s over, so all good there. A woman needing help, got help thanks to Laurie and her call to arms at Facebook. So that is really good.
I am feeling sad about my good friend Lu’s father, passing away. I so wish there was something I could do to help her through this time. Lu. if you are reading, know you are in my thoughts and blessings and if you need me, I’m here! I cannot imagine her pain. That is the problem with having friends so far away, I cannot get over to her home and give her a hug. Love ya Lu!
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I have so many thoughts going on in my lil head and cannot sort them out. ARRGGHH I get so frustrated when this happens. There is no sleep in sight and deciphering my crazy thoughts. I start thinking about new designs for a bracelet, then POOF my mind goes to how can I get out and start doing some photography, then POOF thinking about a blog I want to write on finding my center. I try to concentrate on one, but then something catches my eye and I’m off to another dimension of space and time! lol
I have lil chicken scratches of things I think of and want to accomplish someday. I want a concert ukulele, but then I would like to try a zither or harp. I have heard the vibrations of musical instruments on the body help to center some, find a sense of peace, if you will. I re-tried to play guitar, but my hands were not strong enough to hold down the strings. We have a piano, which I mess around with, but it’s a lil big to have in my bed on bad days! So, I am looking for something small enough to keep with me. I need music in my life…
I figured by now I would be getting tired…NOPE. Just more goofy. Maybe it’s my meds. Ya that’s it, it’s my meds.
Hubby is no longer ‘softly’ snoring. Now he is buzz sawing it. It’s like razor blades being slid through my brain.
me...
I just ordered a snoring mouthpiece thingy for him. I so hope it works or he will be back in sofa city soon. I see visions of me, a wrought iron skillet in hand, and his head. I am thinking ear plugs before that vision becomes reality!! I can still hear him even when he is in sofa city, even when I have my ipod on. The house shakes. I’m thinking it’s it the big one [cali, earthquakes], but no it’s just him…snoring! I have some earplugs from when I had my last MRI. They kind of rock. Better than the ones in the store. But they suck to sleep in. So, pray for the hubby that the mouthpiece works, or no more cal king bed for him!! mwaaaahhhhhhhh
OMG, so hubby is snoring. Not too loud now as the plugs are in, but now one of the 3 dogs just popped a HUGE bean and it stinks!! Holy man…where is the spray? rofl This is so life in my world. I love it! Loud and smelly and I would not change a thing. [maybe get some nose plugs too]
I need Mr. Sandman please. Hope he’s cute, maybe Gerard Butler cute. Maybe not, as no sleep would happen if he was my sandman!! YUMMY man!
Ok, so now going to go surf the net a bit more, maybe play a game or two and hope for sleep. For those who made it through my ramblings, bless you. You are brave! Now I bid you good-night!
Making it Through the Rain 