Hi, I know i must be emailing her brother. My name is Odette and I manage myasthenia-advocacy. org, I wrote a tribute to BB on the site’s first blog. Thank you for keeping this account up and running so that her brave story is shared. I will link the site to this account in honor of her memory. Thank you.
Thank you for the tribute and for anyone that wishes to submit to this blog is more than welcome or you all are able to contact me, her older brother Christian at theicebergh.tumblr.com
Fist off let me clarify this is not Bethany posting this, it is her older brother christian, who happened to log onto her tumblr for the first time in several months.
It has come to my attention that many of her beloved followers do not know what has happened. 4 months ago today on March 9th at 2:14am my lovely sister that you all loyally followed passed away.
I’m not sure what drew me to log in to her Tumblr today but it has been inundated with comments and questions as to where she has been these past months and how they miss seeing her posts on their dashboards.
My family has chosen to leave this blog, this testament to my sister’s true nature up for all of those that she has helped, those who will re-read her posts and find the help they need, and those who happen to randomly come across this page and fine some answers.
If you would like to know the full details of her passing I will gladly speak with any of her loving followers, feel free to follow me if you would like, i post about her often and she helped me just as much as she helped many of you.
Thank you so much for loving my sister, and I am sorry that it had to end.
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.
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.
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.
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…..
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?
Aww really?! My mom just brought me my computer today so hopefully i’ll be posting more and more :) Thank so much for caring!
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.
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.
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 :)