I'm Here If You Need Me...

It's official!

Wed, 07 Mar 2012 10:16:12 -0800

My final plasmapheresis treatment is tomorrow! Which means this horrid IV gets removed tomorrow and I GET TO GO HOME!

I still want them to knock me out to get the IV removed.

I don’t care that it’ll literally only take 2 minutes to remove. The majority of the time taking the two sutures out of the actual apparatus, and then 2 seconds to pull the thing out. But still. No.

Anyway. Bored.

Central Line. Bleh. And my face is super puffy. Damn water...

Tue, 06 Mar 2012 19:32:00 -0800

Central Line. Bleh. And my face is super puffy. Damn water retention.

Hospital stay day 6

Tue, 06 Mar 2012 12:54:08 -0800

Plasmapheresis treatment #4 went well. My calcium was a bit low so i felt “cold” in my chest for a bit. Pretty normal, for pheresis. That’s why they usually hook you up to a calcium drip at the same time. So the tech just turned up my calcium drip and i felt better.

I’m walking better. Er. Farther. Less fatigue. MUCH less fatigue. I still have to remember to walk slow and pay attention to how i’m walking. Otherwise my feet get all funky and i start tripping -_- It’s a process.

Lunch soon.

Watching the looney tunes.

If my numbers are good, i’ll have my last treatment tomorrow and can be released! But i’m not allowed to get to excited about it because there’s a big chance they’ll be low and they don’t want me to get like uber dissapointed cuz then that wouldn’t help the whole “healing” process lol Ah well.

Just a few days left.

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Tue, 06 Mar 2012 11:47:18 -0800

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Tue, 06 Mar 2012 10:40:27 -0800

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Tue, 06 Mar 2012 10:40:21 -0800

Pointless rant.

Mon, 05 Mar 2012 15:45:38 -0800

There’s a friend of mine on facebook that’s a bit of a complainer. Okay more than a bit. Now i’ve known this person for years and i love this person to death. But lately…. i just want to slap them upside the head. Complaining that they have a cold and they just want to stay in bed and die while im here in the hospital hooked up to a machine that is actually removing my own plasma. Complaining that they have to take their dog to the vet and they don’t want to be there they want to go out. HELLO. dont’ take me wrong. I’m not special, i know. There’s even people across the hall from me that have it worse off. I know that. But i’m not rubbing my sickness in everyone’s face. Sure i posted a picture of me getting my plasma done, but hell this has been my life for the past week, I think i’ve earned some sympathy. You on the other hand, my dear friend, need to shup up and quit complaining about your life. So fortunate and they don’t even know it…..

Been a long day. (Hospital stay: Day 4)

Sun, 04 Mar 2012 20:33:54 -0800

Throughout the night i just couldn’t get comfortable. my pillows kept “shifting” and sliding around and i was too tired to try and fix it. Fell asleep around 12, woke up at 2, peed, fell back asleep, woke up at 4 because my infusion line decided to let us know that i had 40 minutes of infusion left. Peed. Went back to sleep. Nurse woke me up at 5 to draw blood and take my vital signs. Fell back asleep. Nurse woke me up to take my vitals again at 6. Doctor came in at 7 to check on me and to see how the treatments were going. Peed. Fell asleep. Breakfast showed up at 8:30. Peed again. Time for meds. Up from then.

Lunch time around 12-ish. Around 1 the infusion people came by and i got my 3rd round of pheresis. My uncle and my aunt came to visit, chris came to visit, grandpa and grandma came to visit, and my other uncle came to visit. My best friend came by and we found a snazy cane that’s available “in store” at my local walgreens that’s purple and simple enough to do the job. (You’d be surprised how many different styles there are o.O)

They changed my bed linens, and gave me some new robes for when i shower next. My mom is going to help me wash my hair tomorrow. Pheresis made me a bit too tired for it today. I did walk around today, though. I had to skip that yesterday. If only they’d just let me sleep through the night. I hate that they always wake you up. “Heyyyyyy are you feeling better? Yes? okay, i’ll wake you up again in an hour to ask you the same thing. than again an hour after that to stab your arm with a needle for the 4th time.” Anyway. We have to “water seal” my neck catheter before i shower so that way i don’t get any water in the tubes as that can cause them to clog and if that happens… eugh…

Went walking around today. Went down 3 hallways today. Got a bit flimsy just as we made it back to my room. I hate the compression tights. I’m far too hot. I want to shave my legs, my armpits, tear my hair out, and sleep naked. It’s far too fucking hot in here. And for them to take out this stupid catheter. Once we get closer to that, i’m going to ask my mom if she can request that they knock me out for it. Getting it in was beyond scary (poem coming soon), i can’t imagine them just “pulling” it out. I’m sure their just going to locally anesthetize it again, and then just “pull” but that pressure…. hell no…. not again. No way. But that’s far from now, so i’ll just push that to the recesses of my brain.

Anyway. Meds soon. then bed. *sigh*

Now i keep thinking of this stupid catheter. You’d think they’d have a better way of doing this. Or at least have the common courtesy to knock you out before they impale your jugular vein with a giant tube….. right?

random anon here to say that they miss seeing you on their dash and are hoping everything's alright with your surgery. hug

Sun, 04 Mar 2012 14:33:13 -0800

Aww really?! My mom just brought me my computer today so hopefully i’ll be posting more and more :) Thank so much for caring!

Me getting plasmapheresis!

Sun, 04 Mar 2012 14:07:08 -0800

Me getting plasmapheresis!

Day 3 - Bad news.

Sat, 03 Mar 2012 14:08:21 -0800

So the plasmapheresis treatments have deplinished my bloodcount. Normally your body will begin creating more cells and what not in time for the next treatment, however, my body isnt doing that fast enough so we need to skip todays treatment and start again tomorrow. If my levels are still low, than ill need donor blood to be infused alongside the therapy. *sigh* this means ill be in the hospital longer than planned.

Some of my “get well” stuffs and gifts :)

Fri, 02 Mar 2012 15:14:41 -0800

Some of my “get well” stuffs and gifts :)

Day 2 in the hospital (Canes and Pheresis)

Fri, 02 Mar 2012 14:32:02 -0800

So my physical therapist here in the hospital said i should concider a cane for school, that way if symptoms start to happen, i have extra support and less chance of another exacerbation. Im not opposed to the idea of it at all, especially for the time after i get out of the hospital and start walking around more. BUT every cane looks like a giant ass tree compared to me lol
My mom and i were cracking jokes saying i was going to put a flag on it so that you can see me a mile away.
Anyway,
Plasmapheresis is pretty cool. No side effects for me,and its over pretty quick. Getting the catheter was MUCH worse than any part of the actual treatment. I dont feel a thing.
They hook you catheter tubes up to a machine that looks like something they used in the movie “young frankenstein.” Your blood slowly goes in, gets seperated by immence gravity/force, plasma is removed, essential antibofies and things are replaced by synthetic means, everything except your yucky plasma is mixed back together and put back into you through one of your many tubes. Painless. Easy. All i do is sit there.
Feeling a bit better today. The weakness is subsiding, my face isnt puffy or saggy anymore, and im eating better. Well. Eating more. The dietitian says i need to eat more protein and veggies. But im on a “soft foods only” diet, which means my veggies are steamed until properly disgusting. Yum.
Still waiting for todays treatment. Seems like the pheresis guy is running pretty late. Spongebob is on :)

ugh.

Thu, 01 Mar 2012 16:51:44 -0800

No pain. None at all unless i move wrong, like a normal IV. But the pressure is almost suffocating. I can breathe just fine, swallow just fine, there is nothing physically wrong with my throat, but thetes just so much pressure from the gauze and the catheter. Ugh.

Catheters

Thu, 01 Mar 2012 11:55:35 -0800

Im assuming are uncomfortable. But the one in my neck….
You read that right. Theres a catheter in my neck. So much pressure….
its normal to be this scared…right? :’(

Im being admitted to the hospital for 5 days…. Weee….. :(

Wed, 29 Feb 2012 17:21:36 -0800

Im being admitted to the hospital for 5 days…. Weee….. :(

"Sometimes you imagine that everything could have been different for you, that if only you had gone..."

Wed, 29 Feb 2012 12:16:01 -0800

“Sometimes you imagine that everything could have been different for you, that if only you had gone right one day when you chose to go left, you would be living a life you could never have anticipated. But at other times you think there was no other way forward—that you were always bound to end up exactly where you have.”

- Unknown (via dahye93

)

I'm starting to think that taking piano was a bad idea.

Wed, 29 Feb 2012 12:05:50 -0800

Don’t get me wrong, i LOVE piano…
I meant taking it at school as a class was a bad idea. the teacher spends most of his time trying to get me to play correctly. In fact today we were learning “kumbayah” and he spent thirty minutes just counting until i could play it right. Or, right-er. My hands are far too delayed. I’m counting in my head but my fingers just… they shake and then i skip keys, random double strike, and sudden stops. Just complete stops. In my head i’m telling them to play and they just sit there. Shaking. And sweating. I have to put my arms down and rest for a second so i can make them go again. I think next semester, if i’m up to it, i’ll look into classes at Family Music center to see if i can find a teacher that is willing to work with someone who has a “disability.”

My teacher knows i have MG, and i think that’s why he spends so much time away from the other students to try and work with me, but i can tell he’s frustrated, especially when i’m playing and i just freeze. It’s the weirdest thing… i wish i could explain it better… Today he pointed to a base cleft note and asked me what notes they were. One was an E, the other a G. It took me 10 minutes to answer. I felt like i was stuck in my head. I KNEW the answer. I made freaking flash cards to learn the notes, but i couldn’t figure out how to work my body. I was stuck in limbo. I could see just fine, but nothing was happening. My eyes were moving around, my hands were shaking, and my brain just didn’t know what the hell “talking” was supposed to mean.

I feel bad that i take other students away from help with the teacher. He was bombarded with questions after class today that normally would have been covered if i wasn’t such a burden. I have to play everything about 70% slower than most people, or my fingers get funky. He sits there and counts for me in a slow manner and goes, “1….and….2….and….3….and….4….” and i still can’t get it. I forget that i have 2 hands, or they are both somehow on different tempos… i The weird thing is… i KNOW when i’m going to hit the wrong key as soon as it starts to happen. I KNOW that my brain said “C” and then i gasp or make some sort of noise, as my finger plays a “G.” I hope IVIG can help with that…they still haven’t called, btw. I wonder if something is up with my health insurance…

Books to read during surgery recovery:

Mon, 27 Feb 2012 19:28:00 -0800

I will add to this list as more books come to my attention :P

Mocking Jay (Hunger games book 3)
The Help
The Lost Hero (Heroes of Olympus: Book 1)
Red Pyramid (Kane Chronicles: Book 1)
Witches and Wizards (Book 1)
Grimms Fairytales
Cinder
City of Bones
Clockwork Angel
Glass
Room
Wicked (Life and times of the wicked witch of the west Book: 1)
Alice in wonderland’s Through the looking glass
Cosmopolitan Issues (Monthly e-delivered to my nook)

(I’m already halfway through 3 of these books…. lol)
I’d say i’ve got a good list ready. I’ve got 4 months of no lifting/bending/or doing anything uber extraneous. Okay technically i can lift after 8 weeks or so, but it’s summer break… what else am i going to do?

I have to write an essay on the movie, "Titanic."

Mon, 27 Feb 2012 16:02:33 -0800

Trust me, i know this movie by heart.
But i don’t want to do that right now lol. I need to summarize the movie first… and i gotta figure out what details i’m going to take out first…. *sigh*

Futurama is on.

I'm Here If You Need Me...

It's official!

Central Line. Bleh. And my face is super puffy. Damn water...

Hospital stay day 6

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Pointless rant.

Been a long day. (Hospital stay: Day 4)

random anon here to say that they miss seeing you on their dash and are hoping everything's alright with your surgery. *hug*

Me getting plasmapheresis!

Day 3 - Bad news.

Some of my “get well” stuffs and gifts :)

Day 2 in the hospital (Canes and Pheresis)

ugh.

Catheters

Im being admitted to the hospital for 5 days…. Weee….. :(

"Sometimes you imagine that everything could have been different for you, that if only you had gone..."

I'm starting to think that taking piano was a bad idea.

Books to read during surgery recovery:

I have to write an essay on the movie, "Titanic."

random anon here to say that they miss seeing you on their dash and are hoping everything's alright with your surgery. hug