So, I’ve got my shrinkers on! They’re sorta like really thick and TIGHT panty hose. It’s really tight on both sides. But on the left side, it’s a little painful to get on but not nearly as uncomfortable as my right side. The right side is a little easier to put on but waaaay more uncomfortable to wear. The left side is painful to get on because the bottom part of the limb is still healing and is still pretty sensitive. The right side is about 90% healed (I think..) so it’s much easier and less painful to get on; There are still some minor spots that are healing and there is swelling that needs to be reduced. Oh and that uncomfortableness that I was referring to on my right side, that would be from the shrinker riding right up to my crotch. Let me tell ya – NOT COMFORTABLE at all…but I’ll suck it up..trying to not complain about it too much along the way. I’ll just have to keep thinking that’s it one more step closer to getting into prosthetics. I have my 2nd follow up with my physiatrist (rehab doc) next week and hopefully I’ll get some good news, or at least not bad news…
The weather is getting nicer and the temps are rising, which prior to the accident, would be wonderful because this would mean: sandals, dresses, shorts, outdoor activities, etc. Unfortunately, right now this means: black wheelchair arm rests that get really hot in the sun, a sweaty back and butt from sitting in a black cushion for my wheelchair (sorry..TMI?), not able to wear shorts (not yet, anyway), forget about sandals or any other warm weather footwear (obviously because I have no feet to put in them.), and a bunch of other things. But hey, at least I’m not stuck in bed at a hospital. I’ll take sweaty, uncomfortable, and out of the hospital over being trapped in a hospital bed any day.
Category Archives: Uncategorized
Slowly but surely…
So…I think I may have decided on a prosthetic facility. I know it’s a big decision but I don’t think it’s hit me just yet and probably won’t until I start actively working with them. But nonetheless, a big decision made. Next up – new car, car modifications, wheelchair(s), and all the other stuff I don’t even know about yet.
Another “milestone” – I’m ready for a shrinker on my right side. For those of you that don’t know, a shrinker is just what it sounds like, it’s used to shrink down my limb. They are used to reduce, prevent or control swelling (edema) in the limb. They fit snugly and apply pressure to the soft tissues of the stump. And hopefully I’ll be ready on my left side soon as well…a step closer to prosthetics.
Being closer to getting prosthetics means that I have a lot more things to think about…How much do I care about appearance and aesthetics? What kind of shoes will I be wearing on a regular basis (this will determine the kind of feet that I get)? And these are only some of the questions I’ll have to think about. Some other questions I’ve been thinking about are: What’s gonna happen if I don’t get a full 90 degree bend on my left leg? Will I not be able to walk “normally” if I don’t get the full 90 degree bend? Will I be able to do steps? Will I have a normal gait or will I walk with a limp? Am I going to drive the car while seated in the wheelchair or in the regular seat in the car? And those are just some questions I’ve got to think about. One of the last things to think about, which my friend asked me recently, what am I going to do for my birthday? Besides it being 2 1/2 months away, it’s the last thing that I’m thinking about. And I’ll probably be learning to walk again around that time. So, I don’t know what I’ll be doing for my birthday this year, but it certainly would be an awesome gift to myself to be able to walk for my birthday.
Prosthetic Facility Research
I checked out 3 different prosthetic facilities last week.
First of the three was a strong maybe, second a definite no, and third a weak maybe. These were the third, fourth, and fifth facilities, respectively, that I’ve checked out from the five total I’ve seen so far to date. There were a couple of things at the first place that I wasn’t sure about, hence the strong maybe. The second place, where do I even start. Word of advice to that place, don’t hire prosthetists that are creepy…BIG turnoff…couldn’t get out of there fast enough. I liked the prosthetist at the third facility but she (first female prosthetist I’d met with!) was much younger than the rest of the prosthetist, which meant she didn’t have as much experience as the others. Going back to the first place I checked out when I starting looking into facilities to ask them some questions. I had no idea what I wanted or what to ask when I first started this process so figured it would be a good idea to speak to them again now that I’m more educated on the topic.
But hey, I can always go the alternative route…leg transplant. Or…maybe not. Definitely cutting edge and beyond interesting, but not sure if it’s my cup of tea. I recently spoke to a doc in Boston that my brother put me in touch with who’s a part of this potentially amazing new surgery. After answering some medical history questions, it turns out I’m a pretty optimal candidate for limb transplant surgery.
Facial, hand, and arm surgeries have been completed but leg transplants are still in the VERY early stages.
As life changing and miraculous as this surgery can be, if successful, it still comes at a price. Let me start with how this process would go..It would start with me going on a transplant list and when 2 legs became available (ideally an Asian woman around my age, with my blood type, around my weight and height, etc..) I would be notified. Keep in mind, this “wait time” could be anywhere from 6 months – 2 years..maybe less, maybe more. And I’m not sure if I’d be able to get prosthesis while I wait, which means I’d be wheelchair bound for as long as it takes. I believe the doctor said an ideal donor would be a stroke victim, but don’t quote me on that. It was a lot of information to take in all at once. Once notified, I’d head to the hospital and be put side by side with the donor in the OR. After the surgery, I’d have to be on anti-rejection/immunosuppresants the rest of my life and if I got sick (even a little cold), my immune system would be so much more susceptible to breaking down even further…which in a worse case scenario, could mean an infection of my transplanted legs. And because this surgery is still brand new, there isn’t even a benchmark of how much time needs to pass after the surgery to determine if it was a successful transplant. I would also have to undergo an extensive amount of PT. If however, the transplant didn’t “take” or I got sick or developed some sort of infection, I’d have to be amputated..AGAIN. Yup. Again.
In my opinion, I think this type of surgery if proven successful would be miraculous, but only if you weren’t eligible for prosthesis and if the surgery didn’t leave you worse off than you were, physically and mentally. And I don’t think I’d want to be part of the experimental phase…
Next up..finding another PT facility that requires less traveling..once I make a decision on prosthetic facility. And figuring out the wheelchair and car situations.
Ya Gotta Believe!
Hi all,
Sorry for the multiple posts within the last 24 hours.
The Amazin’ Mets are helping me raise some money to aid in my recovery and new life. I’ve attached the flyer with all the info for the game. (Please click on link at bottom of this post for flyer.) It’s a Saturday afternoon game on June 14th, followed by a 50cent concert. Even if you’re not a Mets fan (I understand and forgive you.), please try and come out for a nice day (hopefully) of baseball and fun. And it would be nice to meet some of you that have offered me such support and kind words!
Please send me a comment or reach out to me at the email provided on the bottom of the flyer if you’re interested in getting tickets for the game. Deadline to purchase is on 5/31.
Hope to see some of you there!
Ya Gotta Believe!
METS FUNDRAISER for Teenavs7train
It’s been almost 4 months…
It’s April.
I can’t believe it’s been almost 4 months since that night that changed my life forever. On one hand, it seems like 4 months have passed by in the blink of an eye and yet on the other, it seems I’ve been stuck in this wheelchair forever, even though it’s just been 6 weeks. In the last 4 months I: got hit by the 7 train, lost both my legs, had 12 operations, spent 3 months in the hospital, went to rehab, learned to use a wheelchair, became ambulatory, and so much more. Can’t say I haven’t been productive!..even though a lot of the time I don’t feel that way…
Well, at least the weather is starting to warm up a bit. Although, April Showers might make it a little difficult for me to leave the house. How do people who are wheelchair bound leave the house in inclement weather?…They can’t hold an umbrella in one AND push themselves with the other…you’d end up going in a circle! There isn’t an umbrella attachment for the wheelchair (at least not that I’m aware of) and if you hold an umbrella while someone pushes you then that person gets rained on. The next time it rains, look out for people in wheelchairs and let me know how it’s done please. I digress. Mom and I have been taking advantage of the nice weather while we have it and going on some strolls. I get some fresh air and she gets a little workout by pushing me. We’ll both have killer arms soon! The downside of these outings is that people stare. I could care less (although I’m sure on some level it bothers me..probably) but I know it bothers my mom, which she voiced when she said to me, “It’s fine if people look as you pass by but when they turn their heads and continue to follow after you’ve passed them…I just want to smack them!” (I may have paraphrased..). Stare all you want, but for future reference, I’d rather you flat out ask me what happened instead of being all bug eyed…or maybe I just need to get some shirts made that say, “Take a picture. It’ll last longer!” in multiple languages. Maybe I should look into that before my mom decks someone one day! =)
I had my first out patient visit with my rehab doctor since leaving rehab in March. He said that everything looked to be healing on track for the most part and that there were no major issues. I have a follow-up appointment in 6 weeks and hopefully by then I won’t be too far off from having prosthesis. Fingers crossed that healing continues to progress in these next 6 weeks. Until then, I’ll be researching and visiting prosthetic facilities. I’ll be visiting a few this week and will let everyone know how that goes in my next post!
Post from 3/28 – just realized this was still in my drafts…
*Lyrics courtesy of Aloe Blacc’s “The Man”
Well you can tell everybody
Yeah you can tell everybody
Go ahead and tell everybody
I’m the man, I’m the man, I’m the man
Yes I am, Yes I am, Yes I am
I’m the man, I’m the man, I’m the man
….
Somewhere I heard that life is a test
I been through the worst but I still give my best
God made my mold different from the rest
Then he broke that mold so I know I’m blessed.
*Lyrics courtesy of John Legend’s “All of me”
‘Cause all of me
Loves all of you
Love your curves and all your edges
All your perfect imperfections
Give your all to me
I’ll give my all to you
You’re my end and my beginning
Even when I lose I’m winning
‘Cause I give you all of me
And you give me all of you, oh
How many times do I have to tell you
Even when you’re crying you’re beautiful too
The world is beating you down, I’m around through every mood
You’re my downfall, you’re my muse
My worst distraction, my rhythm and blues
I can’t stop singing, it’s ringing, in my head for you
My head’s under water
But I’m breathing fine
You’re crazy and I’m out of my mind
I give you all of me
And you give me all of you
Just some song lyrics that have been stuck with me…
I’ve been researching different prosthetic facilities lately. I didn’t even realize until I started looking into prosthetic facilities that not going back to rehab (for 3? weeks as an in patient) was an option. As I was told by one of the program directors at a facility, you’re not “rehabbing”, you’re learning how to walk again and how to use your prosthetics. Good piece of info to learn because I don’t know if I’d be able to voluntarily check into the hospital/rehab for 3 weeks after being home for months from having checked out of being in the hospital for months! And this would be a good segue into Ben asking if I wanted him to take me to the hospital the other night.
I had my first “bad” night since being home and it had nothing to do with my legs. It was a little past 1 in the morning and we were in bed watching TV when all of a sudden a bad case of (gas) cramps came on. When this happened to me while I was in rehab and I didn’t know what to do (since I can no longer walk things off or curl into a ball..) the nurse told me to lie on my side and that would relieve the pressure. It worked in rehab, but not so much this time. Laying on my side, back, or stomach didn’t help AT ALL. It was now almost 3 in the morning and it just got worse. With the pressure moving up to my lungs making it difficult for me to breathe, Ben asked if I wanted to go to the hospital. I very matter of factly said, “NO!!!, I just want this to go away!!” If while in SO much pain and just the suggestion of going to the hospital resulted in such an adamant no, I don’t know if I can see myself going back to the hospital/rehab for prosthetic training.
As if the other day wasn’t bad enough…(and some random thoughts/rants)
I swear either there was/is testosterone in the drugs I’m taking or the docs did something. I’ve got a lot less leg I’m working with and what I am working with is covered in scars, donor sites, or skin grafts yet somehow…I have more hair on my legs than I’ve ever had in my life!!! I’ve never had to shave my legs above my knees before, but apparently I now have hair there and it’s freaking long! But on the flip side, I guess I’ll never have to shave below my knees anymore…too soon?!? And the hair that’s growing on my “flap” (the skin on the bottom part of my left leg that they took from my thigh) looks like the head of a bald man with a few hairs sprouting out. Lovely. Think along the lines of Homer Simpson, but less orange.
To make it even better, I’ve got all this “new” hair on my legs but I have a bald spot on my head….
So, laying in bed for an extended period of time can cause your hips to contract and that’s why the therapists give me hip extension exercises. But, sitting in this rental wheelchair is bad for my hip and core. So, I’m basically doing exercises to counter what laying in a hospital bed for 3 months did to my hips but then as soon as I get back into my wheelchair I’m contradicting those exercises…someone please explain. On that note, I’ve got a leg/knee rest for my “residual limb”. However, keeping my leg on there extended for too long can risk inflection or limit full range of motion (bending my knee). But not resting it on the leg rest can cause me to not have full extension. Ok…which is it? I’m so confused. This is like when I was in ICU in the hospital…you weren’t allowed to have flowers in your room yet hospital employees that were going into patients’ rooms would be wearing an entire bottle of cologne or perfume…huh?!?
*WARNING – last part of this post may be slightly TMI for some so I’d suggest that you stop reading now if you don’t want to hear about it. In all fairness, I’m just keeping it real…
As if the other day’s horrible events weren’t bad enough, last night and this morning’s event have made the rest of my week! Since the accident, my “friend” has been on hiatus. But last night, she decided to come back to work…greeeaat. And as if that wasn’t bad enough, this morning I woke up to find that she decided to come back full force. Even better. Yes, yes – this means my body is healing, adjusting, and getting back to some sense of normalcy. Whatever you want to call it or however you want to “spin” it, it still SUCKS.
Murphy’s Law
It’s April Fool’s Day, not Murphy’s Law Day. With that being said, everything that could go wrong seemed to go wrong today.
The day started off with us driving into the city to check out a prosthetics facility. Ben wasn’t able to come up with me to tour the facility b/c there was absolutely no street parking and garages in the area were insanely pricey. Then, I had to cut the tour short b/c I was running late to my OT appointment. So, I tell Ben to pull up to the building so we can head over to therapy. Well, with there being no place to park and everyone and their mother double parked, I rolled down 33rd Street while he was at a red light. Wonderful. I transferred into the car as quickly and safely as I could, but we still weren’t able to beat the green light. As I was settling in and Ben was putting my wheelchair into the car, we get honked at by the traffic behind us. Yeah…they all got the finger from me.
So, now we’re in the car and ready to go and rehab is only 5 streets and 3 avenues away..so no problem right? Not so much. It took 45 minutes to get there, causing me to get there with 10 minutes left of my allotted 45 minute appointment..which meant I missed my OT appointment. But not to worry, my OT has an opening tomorrow. Good – I can make up my missed appointment tomorrow. Bad – We get to make an “unnecessary” hour (with no traffic) roundtrip drive for a 45 minute appointment. Good times.
PT was followed by OT and then home. My brother joined me at my appointment to film some footage of me working out so he was my ride home today. Normally, Ben and I hit some traffic (that stretch of the LIE once you get out of the tunnel or the bridge…) but b/c there was an accident on the West bound side, it took about 2 hours today. Yup.
Ok, I’m home now…so everything should be good right? Not quite. Ben and I are watching TV, he with his hot chocolate and me with my green tea. He goes into the kitchen to get some sugar to put in his hot chocolate (b/c apparently it wasn’t sweet enough?!?), reaches for one of the cylindrical air tight containers above the stove, and…….Yup, it opened midway and a shit load of sugar was now all over the kitchen. This accident in itself SUCKED. But…for those that know me, they know that the fact that I can’t help clean up the mess but just watch Ben “inefficiently” clean, is 10x worse. Just stuck in the wheelchair watching…but lucky for me I’ll probably hear the crunching of all the sugar as I roll into the kitchen next time. UGH.
The Latest
Finished with at home physical and occupational therapy from the Visiting Nurse Service (VNS). Actually, the OT discharged me upon his first visit when he came over to open my case. He asked me some questions, declared that I was “high functioning” and that I didn’t need at home OT care, and then proceeded to discharge me. Uhm ok, well I could’ve told you that and saved you a trip out to me! I will have my last Nurse visit next week and start out-patient PT and OT next week as well. That means at least 2 trips a week into the city for the next month.
I went to my first out-patient appointment with the plastic surgeon this past Wednesday. He said everything looked good and that things looked like they were healing well. I no longer need to put xeroform on my left left leg and I can be a little more aggressive when cleaning it in the shower. And apparently I won’t need to see him for another 2 months..We also discussed the potential surgeries I may need to have down the road. Great. All in all, I guess the appointment went well..just continue to wait and heal. C’mon body…hurry up and heal so I can get started on prosthetics! I have things I need to do, people I need to see, and places I need to go.
So, besides attending out-patient OT and PT in the upcoming month I have list of things to research. I have to research: prosthetics, motorized wheelchairs, minivans, psychologists, support groups…
My friend KK came to visit me today while she was in town from LA on work. Loved the visit and it was so good to see you! However, it wasn’t all fun and games. She left with a list of homework assignments for me…Work (Universal Music) has been really supportive throughout all this and a team has been put together to work on some things for me. I’ll fill everyone in and be sending out save the dates as things are confirmed!
Before I end this post, I just wanted to apologize to the ESU guys for (inadvertently) leaving them out of my last “Thank You” post. Obviously unintentional as all of you guys have a special place in my heart. Apologies and THANK YOU.
Til next time everyone…will try to update/post more frequently!
Thanks for following this normal girl that happened to get hit by the 7 train and end up in this shitty (a PG adjective just didn’t cut it) situation…
Thank You
I got a hair cut on Monday. Goodbye hair down to my belly button and hello bob. In my current physical state, it is way to difficult to wash and maintain hair at such a length and if I want to wash it on a regular basis then I have to do what I can in order to make my life easier nowadays. All that hair is going to a good cause. I told my hair dresser to donate it to Locks of Love. Hopefully, that’s where it ends up. But even if it doesn’t, it’ll still be going to a good cause!
On another note, I just want to say a big THANK YOU to everyone for their kind words, generous donations, and just the general outpouring of support I’ve received. I’m so overwhelmed by everyone’s support and i just want you all to know that I’m so appreciative of all of it. THANK YOU, THANK YOU, THANK YOU from the bottom of my heart.
While I’m on the thank you kick…there are some specific thank yous I’d like to make;
Mom – Thank you for being my Mom. I couldn’t ask for a better Mom. You have been and always will be awesome.
Pops – Thank you for making me all those home cooked meals and “good for you” soup while I was in the hospital. No need to drink Ensure thanks to you!
Bro – Thanks for being you. Thanks for being there for me. Enough said.
Ben – Thanks for sticking around. Everyone on the outside might not see all that you do for me but I do. Thanks for being my best friend and husband.
Momma & Poppa Katz – Thanks for driving Ben in all the time so he could visit me. Thanks for making all those insurance and work phone calls so I didn’t have to. Thanks for taking care of the apartment while I was “away”. The list goes on…Thanks for being such amazing in-laws.
Cynthia – Thanks for making my room happier when you came to visit. =)
Annie – Thanks for being my “mom” and nurse while at the hospital. Thanks for being my prostat bartender, my personal organizer, and so much more. You were and are awesome.
Danny – Thanks for being Annie’s personal driver and my personal “driver”. Thanks for filming me while I was high as a kite too! =P
Tan – Thanks for being my personal miracle worker. Thanks for dealing with all the “crap” that needed to be dealt with. You seriously worked miracles and moved mountains for me. Thanks for taking on my “case”. XOXO.
Ho – Thanks for keeping me company during your overnights. Sorry that your over nights sometimes didn’t go so smoothly…Thanks for taking such good care of me…you know what I mean.
**Edit** Klara – I’m so sorry I forgot to include you when I first posted this. Thank you for all the goodies (snacks as well as all the “as seen on tv” items!), being my personal hair dresser (along with my mom), being my notary, and visiting and keeping me company after your long days at the office. **Edit**
The Girls (Jenn, May, Sil, Steph) – Thanks for keeping me sane and for being my girls. XOXO.
Erin – Thanks for putting this awesome site together. A site that everyone loves.
Universal Music Group – Thanks for being so great through all of this. Couldn’t have asked for a better company to work for.
Docs & Nurses – Thanks for putting what’s left of me back together and for taking care of me.
I can go on and on with this specific list, but I probably shouldn’t. To all my friends and co-workers – thank you so much for all the love and support. I was and still am genuinely touched.
I wouldn’t have made it this far without all of you.
Til next time…