Enough is Enough…(EDIT)

Ok…let’s recap…
-December 26,2013 – Fall onto the subway tracks at Grand Central. Get hit by the 7 train. Lose both of my legs.
Right there sounds like it should be enough already, right? Not quite…
-December 26, 2013-February 18, 2014 – 2 months in the hospital, most of it spent in the ICU. 12 trips to the OR. A week and a half of it spent on the floor from hell. Close to 2 weeks without washing my hair…after having been on a NYC subway track. Surgeries, countless drugs, painful trips to get X-rays, poked too many times, the “death” of my veins from being poked too many times.
-February 18, 2014-March 5, 2014 – 2 weeks in Rehab. It’s been over 2 months since I’ve had an actual shower. For the most part, these 2 weeks actually weren’t too bad, compared to what I had already been through. One of the most uncomfortable parts of this stay was probably the fact that my room was so hot, to me, anyway, that I had to pretty much sleep naked surrounded by 4-6 ice packs every single night and I’d still wake up sweaty every morning. Lovely.
-The rest of the year went OK. Nothing too major to be down and out about. I completely fell out of my wheelchair once (on a street corner in Westchester) and almost went flying out of my wheelchair another time (on the corner of Hollywood Blvd. in LA), both instances were horrifying and extremely unpleasant. I had some pain issues here and there, but mostly from learning how to use the prosthetics, so expected.
-Fast forward to March 20, 2015-present day – Surgery #13. I’m told from the Orthopedist and the Plastic Surgeon that surgery went well. However, I’m told, they did pull out a piece of plastic from my leg which had been buried in there pretty deep..just what I wanted to hear. But other than that…surgery went well. OK. The plastic surgeon also revised a scar line. Bonus! (I guess…). Then…the following night (Saturday) I’m told that I have an infection. The tissue swab that they took from me while I was in the OR tested for gram positive bacteria, which meant I had an infection, had to be moved to a private room (private room for free..woohoo!), and would be seen by an Infectious Disease doc. None of this sounded good, but I was assured that I had nothing to worry about, this was just protocol and I should be fine. Sunday – my leg starts to itch. I mention it to the residents and nurses and they tell me, itchy is good, it means you’re healing, which I knew from my past operations. However, as the day progressed, I felt it was getting much itchier and I couldn’t be healing THAT fast. I mean, I’ve been told I heal quickly, but it had only been 2 days..there’s no way I’m healing that fast. I thought about mentioning it to the residents, but I knew they’d tell me it’s nothing and that it’s not good to expose my wounds too much (they had just changed my dressings earlier that day). I was supposed to be discharged the following day and I knew they’d change my dressings before being discharged so I just sucked it up. Come Monday morning when the Plastic Surgery residents come to see me. They take off my dressings, and what do you know…I’ve had a bad reaction to what they were using to hold the dressings in place. Hundreds of blisters all along my 12+ inches long scar line. It just keeps getting better. I get discharged, sent home with a prescription for antibiotics (for the infection), and then I’m home. The first couple of days home went off pretty smoothly. I had some minor pain, but nothing I was dying over. The blisters were slowly popping and the itchiness they caused were slowly subsiding. Then comes Thursday night, I start getting itchy in other places on my body, areas of my leg that hadn’t been operated on, my stomach, my hip, and my hand. Ok, I thought, this has got to just be psychological. I’m not really itchy in all these places. It’s like when one spot on your back itches and then all of a sudden your entire back itches. And then Friday night came around, it gets worse. I’m itchy in those same places, plus new spots, and the itchiness has intensified. I take some Benadryl, which I had been taking the last couple of nights right before going to bed, but it didn’t seem to quite cut it this time around. I try to just fall asleep and ignore it. I wake up today (Saturday) and the second I sit up, I start scratching myself all over, like I had fleas. This was not pleasant. My back, my arms, my ears, all areas of my legs, etc. I go to the bathroom to brush my teeth and after I’m done, I roll up my sleeves so I can wash my face, and then I see them….spots/blotches/hives (?) ALL over my forearm. I let out a little scream and tell Ben to come and look. WHAT IS THIS?!? WHAT IS HAPPENING?!? I then proceed to lift up my shirt. It’s ALL over my stomach. I lift up my shirt again and ask Ben to see if it’s on my back too. Yup. ALL over. I email my surgeons and tell them what’s happening and send them pics. I call and leave a message for the Infectious Disease doc. The answering service asks me if it’s a life threatening emergency, I contemplate saying yes for a second, but then decide against it. But I do tell him that it’s bad. I call up my primary care doc to get his advice. As I sit and wait for one of them to get back to me, Ben and I think it could be an allergic reaction to the antibiotics. That’s the only new/different thing. Everything else that I was taking was over the counter (vitamins or Aspirin) or I had taken at some other time. But, I had already been taking the antibiotics for 5 days, why am I having a reaction now?!?…I still have 8 more days of taking it…ID doc is the first to call me back. I explain to him what’s going on. He agrees, it’s probably a reaction to the antibiotics, which he had told me could be a possibility, back when I was in the hospital(I forgot). He tells me to stop taking it for 2 days and see what happens and then call him in 2 days. But the infection, is it OK to not take it for 2 days? He says it’s fine and if it’s giving me such a bad reaction then I’ll have to stop it anyway. I tell him that I’m coming to the hospital on Monday to see the Plastic Surgeon, can I come by to see him? He says that would be perfect. We’ll figure out a plan when I see him on Monday. If the hives/breakout goes away then we’ll know that it’s the antibiotics and we’ll have to come up with a new plan. If they don’t go away, then we’ll have to examine me to figure out what it is and I’ll go back to taking the antibiotics. The catch – the only other antibiotic that fights the infection/bacteria I got, is in IV form. So, does that mean I have to go back to the hospital? How do I go about getting an IV drip everyday for 30 min if I don’t go to the hospital? All these questions… The doc says, lets just wait until Monday and see what happens. OK…So, I didn’t take the antibiotic today. The hives are still all over me, they’ve basically taken over my body as the day progressed. I’m trying to not itch. It’s very hard. (Sorry if I’m making all of you think you’re itchy just from reading this post…now you feel a bit of my pain.) I’d rather be in pain that be itchy. Being itchy, is its own form of pain. It’s torture. Hopefully when I wake up tomorrow some of it subsides. One itch went away, only to be replaced by a different, more intense, and wider spread itch. I will spare all of you pictures that I’ve taken…
-I’ve learned over this past year and a half…I’m pretty in tune with my body and when I think something is off or going wrong, I’m usually pretty on point about it…unfortunately. But moving forward, if I feel something is off, I’m going to email or call the doc ASAP. I’m by no means a hypochondriac, but I am a VERY detail-oriented person and I notice everything…so if I think something is off with my body, I should trust my gut. Worst thing that could happen?…I’m wrong and that could only be good.
-But really, I’ve had enough. It’s not enough that I lose my legs to the 7 train and have 12 operations in the span of 2 months, but just when I thought my latest operation went well, something has to come up…Just because I can take it, doesn’t mean I want it given to me!!! It just never ends…Whoever is in charge out there…listen up….ENOUGH IS ENOUGH!

**EDIT – I googled “reactions to Levaquin” (the antibiotic) and I click on this site, rxlist.com, and it says…”Stop using and call your doctor at once if you have a serious side effect such as…” And one of them says, “the first sign of skin rash, no matter how mild…” Wonderful.

Successful Surgery

Surgery is the easy part. Recovery is the hard part.
According to the docs, surgery was successful. As for myself, I won’t know until my leg is all healed up and I can get back to using it. Right now, it’s still very swollen and scar lines haven’t fully healed yet so I’m limited in what I can do. Surgery was on Friday, 3/20, so I’m on day 5 of recovery.
A lot happened over the weekend while I was in the hospital, so I’ll bullet point the things that I thought were memorable.
-During the check-in process at the hospital, I asked the gentlemen helping me if there were private rooms (just curious as to how the Hospital for Special Surgery does things). He replied, yes, but they’re an out-of-pocket cost. Figured that much. Naturally, my follow-up question is, how much?..at NYU Rusk it was $399/night, I think…I tell him. He replies with, “You don’t have a heart condition, do you?” No…He then hands me a piece of paper with the different private room options, a menu of sorts. The private rooms go for $1,100, $1,200, $1,300 or $1,400 PER NIGHT. Woah. The higher the nightly rate, the bigger the room size, the better the view, and the more in-room amenities (i.e sofa). Ridiculous. I end up getting a private room for free…you’ll learn why a little further into this post.
-While in the “holding room” all the nurses and residents came to ask me all the usual questions. I’m still unsure as to how I’m supposed to answer, “What’s your height?” and “How much do you weigh?” Well, I know my height and weight in my prosthetics but not when I’m not in them. I can estimate my weight, but how is height measured when my remaining limbs aren’t the same length? Do you go by the longer one?, the shorter one?, the average of both?….And each nurse or resident asks, so what are we having done today? Uhm, should you know? But I guess it’s some sort of check system…I hope.
-I left the “holding room” and left for the OR at around 12N. A few minutes after getting into the OR, they hooked the anesthesia up to my IV and I was out in about 30 seconds. Before fully being put out I had one request for the team. I asked that they please put me back into the bed right side up because at Bellevue, after one of my surgeries, they had transferred me back onto my bed upside down, with my head at the foot of the bed and my legs at the head….
-It was about 3:30/4P when I woke up in the recovery room. Surgery had taken about 3.5 hours. Doc had estimate 3-5 hours, so it was on the shorter end of the estimate. This was the first time I had woken up loopy after surgery. Of the 12 times I had surgery at Bellevue, I had never woken up loopy. Groggy? Yes. Tired? Yes. So, I had woken up and both Ben and the Ortho doc were at my bedside. Based on what I remembered and what Ben told me, this is how it went down. Doc said that the surgery went well. Great. I asked if I had to have a skin graft. No. Awesome. The doctor is telling Ben that they think they’ve increased my range of motion to 100 degrees (it was about 50-55 prior). They manually bent it in the OR and were able to get about that mush flexion. Then the doc picked up my leg and bent it right then and there. I had received a spinal epidural so the lower half of me was still numb so I didn’t feel a thing, but I remember him picking up my leg and bending it. Then the next thing I did…so embarrassing. I happily said, “GOOD JOB DOC! HIGH FIVE!” And proceeded to put my hand up in the air. WOW. NERD ALERT. Sorry, doc. It’s the meds. Don’t judge. =) The doc also told Ben that when the plastic surgeon was working on me, he took out a “chunk” of plastic that was in my leg. Uh….what?!? Yup, you heard correctly..a piece of plastic. Lovely.
-I spent about 5 hours in the recovery room. They couldn’t transfer me into a room until the numbness went away. It took about 4 hours for the numbness to go away and then I had to wait about another hour for a room b/c even though I was ready to go at around 7P, that’s the time of shift change, so I had to wait until everyone was situated. My nurse in the recovery room told me that she told them to make sure I got a good room. =) I was moved to the 6th floor, the window side of the room that had an amazing view of the river and the 59th Street Bridge. Nice. I got settled in and my nurse came to take my vitals and give me my meds..the usual. About an hour after being in my room, I started to feel nauseous. It came and went. But when it came back the 3rd time…uh oh…it wasn’t looking good. I thought, oh crap…do I puke to the left of my bed or the right of my bed? If I puke to the right, it’s too close to my neighbor. If I puke to the left, I don’t know if I’d make it b/c I couldn’t really lean over to my left side just yet. Puke on myself?…Ugh. Then I saw the little puke tray that was on my tray table. Saw it and grabbed it just in time. Strawberry jello and some chicken soup broth. At least it came up easy….I called for my nurse and when he came in I was sitting there holding my tray and thinking…uhm, can you take this, please??….
-Saturday went ok. I had the plastic surgery residents and the orthopedic resident check up on me. They basically told me that everything went well…blah, blah, blah…and that they’d check on me on Sunday. I was on a liquid diet Saturday morning, a soft diet by the afternoon, and a regular diet by the evening. I had a lot of visitors on Saturday. Thanks to everyone that came by on Saturday. XOXO. I was worried that I’d be disturbing my neighbor, Yoko, a lovely 78-year old Japanese woman, who was very happy to tell me that she’s married to a younger man, a 65-year old. Way to go, Yoko! She was very nice and told me I wasn’t bothering her..thank goodness.
-Saturday night came around and 2 minutes after Ben left to go home, a doc walks into the room and comes to my bedside and just starts spewing out info. Wait, hold on. Who are you? What are you talking about? “Oh, sorry”, he says. I’m from the ortho team and the tissue sample we took from you while you were in the OR tested positive for bacteria in the lab. You have gram positive bacteria. Don’t be alarmed. You’re stable and not showing any symptoms, like a fever, so don’t worry. But, as a precaution and hospital protocol, we’re going to need to transfer you to a private room. And then tomorrow or Monday, a doctor from the infectious disease department will come and speak to you? Uh, what? Infectious disease?!?! Don’t worry, they’re just the guys that handle the lab work and will have more details/info on this. Ooookay. I immediately call Ben and ask him to come back b/c I was freaking out for a hot second. It was already past visiting hours and he was worried that he wouldn’t be let back up. I said tell them to just call the charge nurse and they’ll tell security it’s ok. Upon coming back up, Ben tells me that the front desk had a message for me..tell your wife, she doesn’t get to say it’s ok if you can go back up or not. Teehee. =) So, we gathered my stuff and off I went into my private, corner room. This room was much bigger. It had a chair that pulled out into a bed, a mini fridge in the corner of the room, a little sink with counter space, and more windows.
-I texted a few people and told them I had been transferred into a private room. The response from all…Great! My reply, yea…it wasn’t b/c of anything good though. Oh, what happened? I may have an infection. Oh no…did you lose the view? Haha…I just told you that the reason I got a private room is b/c I may potentially have an infection and the first thing you ask is if I lost the view…I did lose the view. My view was now of the hospital building. Oh well, you gain some, you lose some. I think I had the $1,100/night room. And apparently at $1,100/night the TV is not included, still $10/day…crazy. I wasn’t being quarantined. I could still leave the room and have visitors. Whew. The nurse started me on IV antibiotics and then I got settled in and turned in for the night.
-Sunday morning – The ortho residents came to see me and just asked if everything was ok and that it looked like I was ok to go home on Monday if the infectious disease doc cleared me. Then the plastics residents came to see me and change my dressings. They walk in and one of them says to me, you have a nice big room all to yourself now. I said yea, but not b/c of anything good. Oh, what happened? Well, the ortho resident came to see me last night and said I might have an infection. About a nanosecond after I said the word infection, the two of them turned around and started to walk towards the door and said, we’ll be right back. Don’t worry, we’re not avoiding you. Really…?…isn’t that exactly what you’re doing?!? They came back with gloves on (why they didn’t in the first place, I don’t know) and the full-length, long sleeve gowns on top of their scrubs. He says to me, I’m sure you’ll be fine, but we’re just being careful. Yup, ok. Idiot. They change my dressings and then I ask them, will I be seeing the doc tomorrow, before/if I get discharged? Do you want to see him? Uh, yes…that would be nice. Ok, we’ll let him know. Thanks. Please tell him to not treat me like a one night stand. A physical therapist came in a little later after that. He told me that I was already cleared by PT on Saturday so if you want to just rest, that’s ok, but if you want to do some exercises, we can do that, too..whatever you want. As long as I’m not in pain, I’m always down to do some exercises, so I asked him…ok, what kind of exercises. His reply…We can go for a walk. I don’t say anything for a second and then I say, Uhm…how would we do that?…He puts his hand to his forehead, looks at his piece of paper, and then says to me, “Oh, right…sorry…” I said, it’s ok…don’t worry. He seemed embarrassed enough. But then he proceeds to ask me, do you have your prosthetics? I have prosthetics, but they’re not here. They’re at home. Oh, but you have them. Yes, I have them but even if they were here I wouldn’t be able to put them on now. Oh, right..b/c of the surgery. This guy is just digging a deeper and deeper hole for himself. Then he finally ends with, well, we can do some transfer exercises or you can transfer in your chair and we can go for a stroll. Eh..I think I’m good for now..thanks.
-Thanks to all that came to visit me on Sunday!
-Sunday night – my friend Klara brought dinner and dessert (donuts from this new place). I had my mom, my brother, and Klara in my room until about 9:30P. Before they went home, the 4 of us split the glazed donut. My mom then put the box of donuts on top of the mini-fridge, along with a bag filled with a pretzel on top of that. (You’ll see why I bring this up in a sec). Before my mom left, I had her go with me to the pantry, down the hall from my room and fill up my water bottle. While we were at the pantry, the charge nurse from the other night sees me and comes over to say hello. I ask him if he’s heard about my latest drama and he said he had, but that at least I got a free, private room out of it. He asked me if they had told me what bacteria they found in me. I said no. He said he had it written down on my chart and if I wanted to know. Yes! I had waited all day for the ID (Infectious Disease) doc and he was a no show. I was told I was “infected”, moved to a private room, and then never told what was wrong with me. He gave me the name of the bacteria and then it was off to google. Turns out it’s a very common bacteria, one that’s in the outside world and you can get almost anywhere, but most commonly in hospitals. While I was in the recovery room, the nurse said to me, 12 surgeries before this one and not one single infection. That’s amazing. Oh, the irony. Googling the name of the bacteria could’ve gone very badly. But knowing that it’s a common bacteria, eased my mind a little bit.
-Monday morning – Still waiting to get word on if I’d be going home. I got up, brushed my teeth in the bathroom and that’s when the construction started. It sounded like the ceiling was going to collapse on me. My breakfast arrived at around 7:30A, but I don’t usually start eating it until around 8:30A or so and by then the coffee is cold. So, I got in my wheelchair and grabbed the cup of coffee, and by alternating hands, got myself down the hall to the pantry. Once down the hall, I had to ask for help, since I couldn’t reach the microwave. I don’t like buzzing the nurses for stuff like that..I knew I had to ask for help once I was there but I knew I didn’t need help getting there, so why bother them? They always seem so impressed when I do something on my own. Anyway, the ortho residents came to see me, said I was good to go home on their end. Then the plastics team came to see me. They started to take off my old dressings and there it was. Hundreds of blisters. My skin had a bad reaction to something they used to secure the gauze on my scar line. That’s why my leg was so itchy that I wanted to scratch my skin off. It was gross. As they were on their way out, one of the residents said, I told the doc you wanted to see him, he’ll be here to see you in a bit. A little bit later, he showed up. Looked me over, gave me the details of what was done in the OR, gave me wound care instructions for when I get home, and then told me to make an appointment with him for next week. Upon exiting my room, he says to me, “And btw, I was never treating you like a one-night stand. That’s not my style..maybe 20 years ago..” Love it. A short while after that, the ID doc came in. He said, you can go home. Tell the nurses that I told you you could go home and that I wasn’t the one holding things up. Hah. We talked about the bacteria, that I could’ve had it living in me for a while, and that I’ll need to be on antibiotics for 2, maybe 4 weeks. Ok, not too bad. After his visit, I was waiting on paperwork, my prescriptions, the official discharge and a visit from PT (to get in a quick session since I was waiting). While the the ID doc was in my room, Ben arrived and after the ID doc finished talking with me, Ben and I went for a stroll around the floor. I went to visit Yoko and then we did a loop around the floor before returning to the room. When we got back to the room, I decided to try one of the other donuts that was leftover from Sunday night. I open the box and there were only 2 donuts…..uhm, what happened? I asked my mom and my friend Klara if they took any to go. They didn’t. Uhm…I’ve been robbed. Obviously I wasn’t upset that I was short a donut (although the thief did take the Nutella one) or even that it was “stolen”…but it was just so odd. When did it happen? I went to bed at around 1A. The nurse’s aid came in at around 3:30A to take my vitals and then my nurse came in at 5A and again at 6A and I woke up each time they entered the room b/c of the sound of the door opening, the light from the hallway, and the sounds from the hallway. I’d awake before they even got to my bed. So, how did someone come in in the middle of the night, walk all the way into my room, to the corner, remove the pretzel bag on top of the box, open the box, and then take the donut??? What is going on?!? Soooo odd. After thinking about it, I think it was taken when Ben and I went for stroll around the floor and not in the middle of the night. Whoever stole it, could’ve just asked…maybe I wouldn’t have given up the Nutella one, but I wouldn’t given you a donut..jeez.
-After waiting for a half hour and no show from PT, my nurse came in and said, we’re getting you out of here. The construction, which was happening right above me on the 7th floor had intensified (jack hammering, drilling, etc.) and it was getting ridiculous. She brought in the paperwork, the prescriptions, and once we went over everything and I signed everything, I was good to go. My nurse told me she was sad to see me go b/c she and all the other nurses and aids said I was such a pleasant patient. =) I’ve had some experience as a patient. You can be grumpy and angry on your own, but not to the nurses and the aids that are caring for you. Ben brought the car around and by 1:30ish we were on our way home.
-I’ve been home for about 2 1/2 days and it’s been nice to be home, but I have been so uncomfortable. SUPER Swollen, SUPER itchy, covered in blisters, and bleeding/oozing. Luckily, pain is minimal…so at least, I’ve got that going for me. So, on my agenda…just resting, taking my meds, and trying not to scratch myself to death.

Gone too soon…

A few weeks ago, Ben and I went to the movies. The theater rooms at this theater are on the 2nd floor. We bought our tickets and took the elevator to the 2nd floor. I haven’t taken an escalator yet b/c they move too fast for me and since my pace is still not up to “normal” speed, it’s very scary, to say the least. When the movie was over, we exited the theater and made our way over to the escalator. It was a little slow when we took it up, but after about 5 minutes of waiting and not hearing any sounds of movement, I told Ben that I thought the elevator was either broken or had been turned off. Ben went to look for someone to help us. We had seen one of the last showings so the staff was a little light. He found a concessions guy and he went to check to see if it had been stuck on the third floor. Fast forward – he checked, a security guard checked, and it was concluded that I wouldn’t be able to take the elevator. We still weren’t sure why, but no matter. OK…well, now what. So…the security guard asks me..Can we help you get on the escalator? I said…mmm…I don’t know. We can help you..it’ll be ok. Well, I’m not so sure about that. I have prosthetics, so I don’t know… I think up until that point they were just thinking…Can’t this girl with crutches just step onto the escalator and then ride it down? It would only be 2 steps that she would have to take. Why does she HAVE to take the elevator?!? But then once I lifted my pants, it was a game changer. Now I’ve got 3 people helping me and making sure I was ok. Yea, ok…thanks. Like I’ve said before…different levels of handicappedness (I don’t think it’s a real word…) garner different levels of help and sympathy. What they ended up doing was turning off the escalator so that I could step onto it, turning it back on once I stepped onto it, and then turning it back off so that I could step off once we reached the bottom. There is a big jolt once the escalator is turned back on and both myself and Ben were unprepared for it. I didn’t fall or anything, but I did grab on and let out a little woah! To which point the manager, who was standing on the step behind me, felt the need to grab the waistband of my sweats and proceed to pull my pants and underwear all the way up into my ass. Um, thanks. She also felt the need to hold onto them during the entire ride down and until I stepped off the escalator. Lovely. So, that was an experience.
About a week after that, I went prom dress shopping with my little cousin (My cousin’s (Annie) daughter – your name made it into a blog…happy? =)). We were at the last boutique for the day and there was a little bit of a wait before it was our turn to be helped. The shop had a little waiting/seating area and when the ladies that were already seated saw that I had crutches, they waved me over to sit down. I hobbled myself over and plopped myself down on the couch. There were 2 older ladies to the right of me and a mother with her 2 teenage daughters to the left of me. Right after I sat down, one of the older ladies said to me, “What happened? Did you break your leg?” I smirked to myself and for a hot second, thought about what to say to them. I didn’t want to be too harsh since there were the 2 younger girls to the left of me, but then I thought, but there really isn’t a “gentle” way to explain what happened. This was also the first time, outside of being at a doctor’s office or at A Step Ahead, that someone has asked me what happened, let alone ask if I had broken my leg. So I just came out and said, “Actually….no, I was run over by the 7 train.” Boom. Just like that. I said it very matter of factly. I think right after I said it all of their eyes popped out of their heads, both shocked and unsure if I was serious. I think the lady said something along the lines of…What? The 7 train? Like the one at Grand Central? I said…Yup. That’s where it happened, actually, at Grand Central. They then proceeded to ask me a few questions, which I answered. They weren’t prying, just general “follow-up” questions, I guess. I think they felt OK asking since I sort of dropped that bit of info on them pretty openly…which was fine with me. Always better to inquire nicely, then stare rudely. Sometimes, life just sucks. A couple of weeks ago, my PT at my prosthetic facility suffered a massive stroke and then fell into a coma. He passed away this past Monday, after being in a coma for two weeks. He was an amazing man. Sweet, funny, smart, kicked my ass every time I had a session with him, and always pushed me to accomplish things that I didn’t even know I could. He’s the reason I’m able to walk on my prosthesis. This should not have happened to him. The selfish part of me is upset that he’e no longer here to help me in this journey. I was supposed to have at least 10 years with him…Although we only had a short time together, he did so much for me and was a big part of my recovery. Phil, you will be missed. Thank you for all that you did for me.
I’ve got my surgery this Friday, 3/20. Yikes. I’m not nervous for the surgery itself, per se, but scared that the surgery might not be successful and that the outcome doesn’t turn out to be what we’re expecting or hoping for. I’m also worried that I’ll need more skin grafting, which the docs won’t even know if I’ll need into I’m in the OR. I’m petrified to wake up after surgery and be in excruciating pain because I’m had yet another skin graft. Back in the Bellevue days, I was in soooo much pain the first couple of weeks, if anyone grazed my bed or made even the slightest movement around my bed, I cringed. I’m not looking forward to potentially waking up with a catheter inserted in me or a slew of other unknowns…. T-5 days…I’m also not looking forward to being fully wheelchair bound again for 4-6 weeks. I’ll be accepting visitors while I’m recovering!…both at the hospital and once I’m home. =)

February – Teena stressed out month…

Well, the rest of this winter is going to be interesting… Anytime there’s more than a dusting of snow, I’m pretty much trapped inside the apartment. Until I’m confidently on my feet and have my bearings (and probably even after I have my bearings), it’s very difficult to walk in the snow, especially when it’s a mixture of snow and ice. I know, even when I had my legs, that I was SUPER careful when walking when the streets were as icy as they were last week. So, if able people are slipping and sliding as they walk…
I FINALLY have a date for this surgery. Hallelujah! This was the most inefficient process ever. Let me recap (Sorry for the repeat..just venting here)…
I contacted the surgical coordinator for the first time, emailing her my phone # and asking her to call me, over 2 weeks ago. Three days later she calls me, telling me that she’s calling because I asked her to. Well, obviously. I told her that I wasn’t familiar with this process so she explained to me that she was waiting for the doctor to give her the coding for the procedures, then she would call insurance, then check the schedules of the doctors, and then call me back to discuss dates. Ok. And as we all know, as per my last post, that I called all week but wasn’t able to get in touch with her. Then this past Monday, she called me and apologized for not getting back to me…the office had been closed b/c of the snow….EVERY day? Fine, whatever. She told me that the doctor had given her the codes and that she would reach out to the other doctor’s office to check his schedule and would get back to me later in the week. When Thursday came and she hadn’t reached out to me, I called, naturally. And what do you know?!?!? She had an out of office message on her machine. But, wait…it didn’t snow on Thursday…so I’m confused. She must have so many vacation days!…what a nice work schedule she has.
Ok, now it’s Friday. Time to start the calling… First call was at 11:30ish in the morning. I get the out of office message, the same one from the day before. Is she still out or has she not removed the message yet? 12:30ish I call again. No more message this time, but no answer either. Hang up. Did I call every hour? Nope. Every half hour. It’s Friday and I thought there might be a change they leave early…maybe 3P, maybe 4P. So, I proceeded to call every half hour. Finally, on the 3P call, I actually have her on the phone. She says…let me call the other doctor’s office now and I’ll call you back in a few minutes. I say ok and then hang up. I regretted it the second I hung up. Crap..I should have told her that I’d hold and stay on the line while she made that call. Luckily, at about 3:30, she called me back. She tells me that it was difficult to find a date b/c, we’ll call him Dr. A, is going to be out 1 week in February and then another in March and that, we’ll call him Dr. B, is also out one week, so the earliest we can do is March 20th. Fine, let’s put that in the books. But, if something earlier opens up I’d like to move the up the date. She makes a note of it. Then I ask her what the next steps are. She tells me…I’ll email you next week with the codes and payment information and then you’ll have to call up your insurance company and ask them what they’ll cover for the procedures (using the codes to reference the procedures) since Dr. A is out of network. Oh…I thought you did that. No, I’m going to call them up to get authorization for the surgery but you’ll have to call to get the coverage information. Ok…so based on what I can gather from the limited communication that I’ve had with this woman, it’s taken her over 2 weeks to get codes from Dr. A, review Dr. A’s calendar, and reach out to Dr. B’s office to coordinate a date of March 20th. Does that sound about right? Are you F***ing kidding me?!?! Oh, and it seems like she only just called up Dr. B’s office today to coordinate a date…when I finally got in touch with her and she said she’d call me back in a few minutes after calling Dr. B’s office. Had I know she was this inefficient (I need a stronger word…inefficient doesn’t even cut it for me), I would’ve emailed Dr. A myself, asked him for the codes, then called up his secretary and asked her what dates he’s available to operate, then called up Dr. B’s secretary to get his availability, and then emailed the surgical coordinator with my options. Oh, and then call up my insurance company to find out about my coverage for this operation. And it wouldn’t have taken me over 2 weeks!!! Holy crap…
Now that I’m done venting, here’s the deal about the surgery. Friday, March 20th…happens to be the first day of Spring. I’ll have to stay in the hospital for 3 nights, with a discharge date of Monday, March 23rd. Sucks. I thought I’d only have to stay over 1 night, if at all. This is going to lead to so many more questions…Oy. I’ll have to go to the hospital 1-2 weeks prior to the day of surgery to get all the necessary pre-op tests run to make sure I’m cleared for surgery. And a few days prior to the surgery, I’ll have to go to the doctor’s office. I’ll speak to the doc on the specifics of the surgery when I see him then. Of course, I’ll also have to call him the insurance company and figure out the costs of everything and what I’m going to be responsible for…2 out of network doctors and 3 nights in the hospital…this could be VERY costly. Is there a possibility that I’ll have to find an in network doctor if it’s too much? Potentially. But, I figured I’d at least have something scheduled with this doc. If it turns out to be too costly, that’s really going to put a delay on things. As it is, I’m at somewhat of a standstill in my progress until I have this operation. So, searching for a new doc means getting referrals for an in-network doc, or potentially several, until I find one I like and am comfortable with and has experience working with amputees, visiting these doc(s), possibly getting more X-rays/tests, and then taking however long it will take to schedule surgery. I’ve been trying to schedule this March 20th date since January, so by the time all is said and done, I may not have this surgery until the end of the year if I have to look for a new doctor. And lets not forget, the 4-6 weeks of recovery time after the surgery of which I won’t be able to put on my prosthesis and be tied to my wheelchair.
I started this post last Friday. I spoke to my insurance company today (Monday). I still need the surgical codes so that I can speak to the billing departing of the doctor’s office and hospital but I called up my insurance company so I could get the breakdown of my out-of-network benefits. And I don’t know how much everything will cost (surgery, consultations after surgery, hospital stay, etc.), but it sounds like if I stick with these out-of-networks docs…a lot of finagling or creativity is going to be necessary. My insurance contact is going to work with me and try and do everything she can to help me, since this is a “unique” situation. But let me tell you about the example she gave me about someone who got back surgery with an out-of-network doctor (Mind you, I didn’t have specifics about the surgery or his condition, obviously)…Surgeon’s claim – $28K, insurance paid $2K. Hospital’s claim – $98K (I don’t know how long his stay was or what it was for), insurance paid $7K. That’s $117K that he was responsible for. Seriously?!? What’s the point of even having insurance? Great. Fun times. Am I going to have to start some web site directed at people with amputee fetishes and charge for “peep shows”?!?! I kid, obviously. Ick. But, I mean…come on…
Next steps – get procedure codes and speak to billing department of doctor/hospital. Speak to A Step Ahead and see if they have “back-up” docs that are in-network for me….
I liked it better when a doctor would just come into my room and tell me we would be going into the OR in a couple of days and then on that day someone would come and wheel me into the OR. This is going to be surgery #13, but only my first time having to deal with all that goes with scheduling surgery. As if having surgery #13 isn’t stressful enough…

To Stalk or Not to Stalk?…

Hope everyone is doing OK after the “storm”. It wasn’t bad here in Queens, but I know it was worse further out East. I was trapped inside the apartment for a few days, literally. I know there was a ban on public transportation and being out on the roads, but I couldn’t step foot outside of the apartment. Technically, I could…but if I didn’t want to risk falling on my ass the second I stepped on the snow, then it was best to just stay indoors until some of the snow melted away. Aside from slipping and falling on my ass because I can’t feel the ground, I can’t ‘march” in the snow (the way you walk when the snow is higher than your ankles), so I sort of shuffle through the snow…which is kind of a pain…at least when my shoes get soaking wet, I don’t feel the wetness or the cold…. Hopefully, it won’t be too bad this year…
Ok…so I’ve been trying to schedule this surgery and it’s becoming increasingly frustrating as I’ve made no progress and haven’t been given any information. This is not good for me. I need to know what’s going on. I need updates. I’m in the dark and I don’t know what’s happening. It’s killing me. I’m a control freak and the fact that I can’t do anything to speed this up or not getting my emails or phone calls returned is stressing me out!!! AHHHH. In my last email correspondence with the doc, he CC’ed his secretary and surgical coordinator, and said, “ok lets book her at HSS” (Hospital for Special Surgery). I then replied to the surgical coordinator with my phone # so that she could give me a call and we could discuss the next steps. I’ve never had any surgery prior to my accident so I didn’t know what would be involved in scheduling one’s own surgery or the protocol. Like I said in previous posts, I’m just used to a doctor coming into my hospital room and telling me when we’re having surgery and then being wheeled into the OR a few days later. Ok, so I emailed her and didn’t get a call. Two days later, I called and left her a voicemail. She called me back three days after I sent that email. I explained to her that I’d never scheduled surgery before and didn’t know the process, blah blah blah, so I just wanted to be in the loop. She told me that she was waiting on the doc to give her the procedure code and then she would call up the insurance company and speak to them. This doc isn’t an in network doc so she needed to call them up in order to get pre-authorization and then find out what they would cover and what I need to cover…blah blah blah. Basically, $$$. I realize three days isn’t that long to wait for a return call…but it was for me!!…control freak, remember?.. I think this was a Wednesday and she said hopefully she’d have some info by Friday. Naturally, when Friday afternoon came around I called her…got the machine. This was last Friday, I believe. So, this past Tuesday I called to follow up. Machine…again. I left a voicemail just asking for the latest update, if there was one. Thursday rolls around and nothing. I call back. Machine…Aaaagain. I send an email asking for an update and that I’d really like to get the surgery on the books and that if there’s anything I can do on my end to please let me know. Now it’s today, Friday…no email response or call back. I know everyone is busy, but if you sit in front of the computer all day…it takes 2 minutes to email me back!! Just saying! So, I call. I get the machine…yet again…staying that she’s out of the office. I think this was the 2nd or 3rd time this week she was out of the office. Hopefully, everything is ok..otherwise I look like a big asshole here. But if there was something going on that caused her to be out of the office, you’d think someone would be covering…no? When I spoke to her in that first phone call and asked her what she thought would be a likely time frame for the surgery she said that they were booking for March now. Ok…so here’s my concern. This was over a week and a half ago and she told me March. We are now at the end of January and I don’t want March to become April. I know that without getting the authorization from insurance and all that other necessary info, she can’t actually schedule me (so annoying), but I’m worried that because all this paperwork stuff is taking so long, my potential March time frame will get pushed to April. I’m not in a rush to get into an OR again, by any means, but if the surgery is going to put me out of commission for a few weeks then I’d rather get it out of the way ASAP. Also, if this surgery is going to potentially help me walk better, the sooner the better! Am I being overly persistent here? Have I gone into stalker mode too quickly? Do I need to tone it down and take a breath?…OR do I need to call and email more and kick the stalker mode into high gear?!?!?

People and Patience

Hey everyone! If you’re gonna be in front of a computer with an internet connection on Thursday, January 22nd, then tune into beterrific.com/live at 4P and you’ll be able to watch me on your computers! BeTerrific.com produces positive, original content and programming. They cover a variety of topics, including, sports, entertainment, technology, as well as human interest (like my story!). My friend (Michael) and my brother (Peter) are 2 of the creators behind this terrific (!) site. Michael will be interviewing me on Thursday. Grab a set of headphones and tune into beterrific.com/live on Thursday @ 4P if you can! Hopefully, I don’t look like a fool! Yikes.
Thanks for all the love in response to my last post. XOXO. I just want to let everyone know that I’m OK. I’m sorry if it sounded like I was whining or a crying for help. Yes, I was talking about how some days it feels very lonely when I’m at home with no actual interaction with the outside world and how it would be nice to have some company but I was also talking about another kind of loneliness. I realized I didn’t go into it…probably b/c it was getting to be a pretty lengthy post. The loneliness of not being able to share this burden adds onto the actual physical loneliness. I’m the only one that bears this burden and no matter how often I have company, how many dinners I go out to with friends and family, or how often I’m distracted…it’s still just me. With that being said, I just want to thank everyone, again, for the love.
I went to the movies last week (not my first time). It was one of those theaters where you choose/reserve your seats when you purchase the tickets. All the handicapped seats were already reserved so we chose 3 seats from the aisle that were 3 rows down from the handicapped seats. There’s usually a railing and I had Ben and my friend, Wade, with me..so I wasn’t worried about making it to the seats and I figured that if I was struggling people would see me and offer up the handicapped seats to us (assuming the people sitting in them weren’t handicapped). Well, I did struggle (it was a very steep decline) and nobody that was in the handicapped seats offered up their seats to us. Maybe they didn’t see me struggling (I wasn’t loud, but I definitely wasn’t whispering about the hard time I was having either.), but it didn’t seem like they were all “in need” of those seats. At one point, I was taking up the entire aisle because I had to reach over from the left to the right hand rail. The hand rail on the left ended and started up again on the right side. Two gentlemen, walked up behind me and said, “Excuse us..”, with a slight attitude. Granted, I knew I was taking up the entire aisle and causing a back-up due to the amount of time it was taking me to walk down 2 rows, but chill out…there was still 10 minutes until the movie would start. This is exactly why I make it a point to roll up my long pants when we go out. When people think I’m just on crutches, they don’t give me the same “leeway” as they do when they find out I’m on crutches b/c I have a pair of prosthesis on. Once they said excuse us, I replied with a sorry…and that’s when they saw my prosthesis and cut me off and said, “Oh! We’re so sorry! Take your time!” I said it’s fine and let them go first. They went ahead and then asked if I needed any help. I said no. They asked if I was sure. Yep, all good. It’s a funny thing…I want people to see that I have prosthesis on so they give me more space and are more patient towards my situation, but at the same time, I don’t want them to treat me like I’m incapable of doing something. Once I’m at the point where I no longer need the crutches and am 100% independent (I hope), I may no longer feel the need to have my prosthesis on display, but for now, I definitely do. This situation wasn’t exactly an example of that, but it just a little irritating when being handicapped with just crutches isn’t enough of a “disability” for people to be a little more patient. I’m not bashing those people, because I’m sure prior to the accident I would’ve been a little impatient back then too (We are NYers, after all.), but now that my eyes are open to different things, I’m just more aware. I think I freaked some people out after the movie ended too. When we sat down for the movie, most of our row was already filled up so only a few people had to walk past us. However, when the movie ended, half the row would need to walk past us in order to exit the row. Well, since I had a difficult time walking down the steep decline, I knew I was going to be slow going walking up the steep incline. So, since I knew I wasn’t going to be able to walk up the aisle with everyone else exiting and I knew I wasn’t going to be able to exit the row and then wait in the aisle for it to clear, I took off my left prosthesis and held onto it so people could exit the row without me having to get up. My right leg is a prosthetic from my thigh down so I can bend the prosthetic back so it’s not blocking the row, but my left leg is a prosthetic that’s below the knee and b/c my knee can’t bend more than 50 degrees, I can’t bend it back all the way, leaving it stretched out in the row. Most people stared as they walked out of the row. Fine, as expected. They stared and then went on their way. This one lady…stared as she walked out of the row and then when she got to the aisle, stopped and just stood there staring. Uh…ok. She stopped to put on her gloves and stare. After about a minute, Ben said something like, watch your back, to Wade, which got her attention and then she kept walking. I get it…it’s not something you see. I’d stare too. You probably have never seen it, expect for in the movies. But, either approach me and ask me something if you’re curious, or do a normal 5 second long stare, like everyone else, and then move it along!
I have to schedule my surgery this week. It’s so odd to be scheduling my own surgery. I never had any sort of surgery prior to the accident…closest would be my root canal..and when I was in the hospital, the doctors would just tell me when I would be going into the OR and then the nurses would just run all the necessary pre-op tests. But, to have to call up the doctor’s surgical coordinator and schedule my surgery..that’s just weird. Not to mention, all the questions I’m going to have about showing up to the hospital that day and other things a “normal” person wouldn’t ask. In the hospital…I was in bed 24/7, always in a hospital gown, IV already in…good to go for surgery all the time! Now….what do I wear coming into the hospital? Probably doesn’t matter since I’ll have to change into a hospital gown when I get there. I never had any underwear on under my hospital gown…do I keep it on or take it off upon changing into the gown? What’s wrong with me?!? Who thinks about these things when they’re about to have their leg cut open?!? Don’t worry…I’m thinking about all the things related to the actual operation as well. Unless you don’t know me or are new to reading this blog…you’d know that!
Sometimes there’s a big gap in between posts because I either, forget, or don’t feel I have anything “good enough” to post. So, if there’s anything any of you would like me to talk about, anything you’re curious about and would like to ask me, go for it! I’d be happy to write about it and don’t worry, if I’m not comfortable posting about it, I’ll let you know. But..doesn’t hurt to ask. IF you have something you want to ask me or want me to talk about on Thursday’s interview, let me know before Thursday and I will try and talk about it on the beterrific.com/live.
Plugging the site/show again….beterrific.com/live on Thursday, January 22nd @ 4P.

Woe is Me…

It’s funny the things that I missed after my accident. Yes, there are the obvious things: walking/running anywhere, yoga, driving…pretty much all the “active” things that involved using my legs. But, I missed doing things like: dishes, cooking, doing the laundry, etc…or maybe missed being able to do them is a more accurate statement. I was watching an episode of Dateline the other night and one of the segments focused on the Olympian, Amy Van Dyken. Van Dyken was in both the 1996 and 2000 Olympics and won Gold in the 2000 Olympics. She was in an ATV accident in the summer of 2014 and suffered major spinal cord damage that led to her paralyzation. In her interview with Dateline, she talked about how she was very happy when she was able to go home from the hospital but that it wasn’t the same because she wasn’t able to do the dishes, cook, shower in her own bathroom, or any of the other “normal” things she used to be able to do in her own home. So, I guess it doesn’t matter if you’re a Gold Medal winning, Olympic swimmer, or little ol’ me…wanting to be able to do the ordinary, mundane chores of daily living after getting home from the hospital isn’t such a bizarre thing. I can now wash the dishes, cook dinner (hopefully without burning myself or the apartment down), and do the laundry (with help). Woohoo! Only I would get so excited over these “chores”. Hah. I think it’s more excitement of having some sense of independence back, as opposed to being excited over doing the chores themselves. But, there are still some things that I still can’t do…
I still can’t sit down on the floor (unless someone places me onto the floor) because my left knee doesn’t bend enough to allow me to do get down there or get back up. (See how much you actually bend your knees when you go to sit down on the floor from a standing position) I still need help going to the bathroom when we go out to places that don’t have a proper handicapped accessible bathroom, which means I have to have someone that is comfortable in helping me in case it’s necessary. Not being able to go to the bathroom solo is not the greatest thing in the world and it’s not like when girls go to the bathroom in pairs…this person has to actually help me sit down and get up from the toilet. Fun times. And the most difficult thing to deal with…I have yet to go anywhere completely on my own since the accident. I mean, if necessary, I can walk to the mailbox or even to the store, which are both about less than 2 blocks from the apartment. However, if I walked to the store by myself I’m probably not going to be buying anything that’s bigger than my pocket because if it can’t fit in my pocket…I’m not really going to be able to carry it and walk a the same time. I still need 2 forearm crutches to get around and it’s a bit difficult to carry things and attempt to walk, since it will throw me off balance. And I may have lost 2 legs, but I didn’t get any extra arms/hands. Sometimes, when I’m at home, I’ll practice walking using only a single crutch, but outside, still really nerve-wrecking. Once we get the new car, install the hand controls, and I learn how to use them, then I get gain a little bit more independence. I won’t be able to go everywhere on my own, but at least I can go to places where I’ll know what to expect on the other end. I.e..Therapy, my parent’s apartment or any family member’s apartment, places around the neighborhood, etc. Driving for the first time is going to be super nerve-wrecking as well…yikes.
Since getting my prosthesis, I definitely get out and about more, get in and out of the car a little easier (not to mention we don’t have to lug the wheelchair around), and obviously, I can walk around places. And of course, being a newbie on prosthesis means I still have plenty of issues to deal with, but for the most part, those issues are “better” than the issues that came with being in a wheelchair 24/7. Although I get out of the house and am out and about more, I’m still limited in the places I can go. For example…A few weeks ago, I met some of my friends for lunch. After lunch, we all talked about our plans for the rest of the day and nobody had any plans until later that day. Ok…what should we do? Should we go back to Sil’s house? She has a lot of steps leading up to her front door, doesn’t she? Yea..that’s not going to be easy for me. Ok…no then. Shopping? Oh, that’s a lot of walking for Teena. Nope..next. We can get some coffee from the coffee shop down the road. Ok, that works. I know my friends don’t care, but part of what’s going through my head is…Why don’t you guys just drop me off and go to Sil’s place or go shopping? I don’t want to be the reason you guys can’t do either of those things. But then, I’m also thinking…I don’t want to get dropped off and sit at home by myself while you guys continue to hang out. It sounds so pathetic.
I think sometimes people that don’t see me or talk to me on a somewhat regular basis, are under the assumption that now that I’m doing “better” and am walking around on my prosthesis, that I’m happier than I actually am. Now, don’t get me wrong, I’m not saying that I’m sad or depressed, by any means. I’m much happier since being freed from being in the wheelchair 24/7, but life still kind of sucks at times. I can now prepare a meal for myself, wash the dishes, and bathe myself..all pluses that don’t really come with any negatives. I can go out with friends..but only if it’s going to be a park the car and go right to the destination outing. IF it requires too much walking around, then I’m not quite there yet. And the biggest thing…I can spend the day at home, on my own. Just a few months ago, my mom would come over and spend the day with me and then when Ben would be headed home, my mom would head out because Ben would be taking the next “shift”. It’s great being able to take care of myself when I’m home, but it gets really lonely. I don’t have any human interaction all day. I might text, email, speak to people via IM, or make an occasional phone call, but if I don’t have an appointment or therapy, I have no human interaction. And you might not realize it..but that can get really hard to deal with. (Maybe that’s why I talk so much when I’m at therapy!) And prior to the accident I probably had days where I’d go into work and not really interact with people, but they were there if I wanted to. Commuting into work, being at work, going out to get lunch/coffee, commuting home…all opportunities to interact with people. They may not necessarily be deepest of interactions, but interaction nonetheless. Occasionally, I get the, “but you look so happy” comment. And I probably was at that moment. At that moment, I was probably having dinner with you, watching a movie with you, shooting the shit with you, etc…doing something/anything with you meant that I wasn’t sitting around by myself. I’m not saying that I need someone to keep me company or “entertain” me 24/7, but I guess I’m just trying to point out that just because I am happy when I’m with you (I am..when I’m with you), doesn’t me I’m “better” or always that way. None of those people see me when I’m crying at home over any number of things. This doesn’t happen as frequently as it used to or over as many things (I no longer have a mini breakdown whenever I drop something on the floor anymore), but it still happens every once in a while. Sometimes it just creates a feeling of being trapped. It’ll get better and I know this, but it’s tough. It’s not just the physical stuff, but the mental stuff is rough too.
And one last thing to touch on before I end this post. (Sorry if this post seemed like it was full of whining and complaining…hope it doesn’t turn you away from reading future posts!) One other thing I kind of had to adjust and deal with were the visitors. When I was in the hospital, I would have visitors all the time. Whether it was family who was always rotating around, or friends who would come by whenever I was up for visiting, I always had company. When I transferred over to NYU Rusk, I still had a good rotation of visitors, a little less, but I didn’t have my own room anymore and I had therapy to do during the day, so it was fine. After getting settled in at home, I had a steady amount of visitors come every weekend for a little while. We live in a part of Queens where the easiest way to get to us is either by car or the LIRR. IF not by those to modes of transportation, then it’s a subway to a bus. I totally understood the hassle that came along with visiting me. But after a couple of months or so, that steady stream dwindled down. You kind of go through a little bit of withdrawal. It’s werid. Obviously, I don’t blame people for not visiting me more. People have their own lives to live. Would I like it if they did? Of course!..but not ideal..I know. It’s such a odd thing…but it really is like I’m going through visitation withdrawal, or something.
Thanks for reading..til next time!

Long time no see…Goodbye 2014. Hello 2015.

Sorry for the delay everyone. I wanted to wait until after all of my appointments before I put up a post…
In the last 3 weeks I’ve seen 2 Orthopedic Specialists, a Plastic Surgeon, had 2 separate X-Ray appointments, and 1 CAT scan appointment. And upon leaving the Orthopedist Specialist today, I have an MRI appointment to schedule. Once I’ve had the MRI, the docs will review the images, we’ll (docs, prosthetist, and myself) discuss, and then schedule my surgery. That’s one way to start the new year…
The surgery will be on my left leg. The goal of the surgery is to increase my range of motion. I’m currently at about 55 degrees of flexion (bending) and hopefully the surgery will increase that to about 90 degrees. The proposed plan is to cut me open on the lateral side of my leg (outside part of my left leg, near my knee), remove the 3cm sized bone (heterotopic ossification)* in that area, that may be restricting my range of motion, break apart some scar tissue, fix the neuroma* that’s behind my leg, and remove some of the extra tissue that’s on the medial* bone near my knee. I think that’s it. If I have to be cut open, I might as well get everything done in one shot. Recovery will be about 6 weeks, which means I’ll be out of commission and won’t be able to wear the prosthesis for 6 weeks. Not great, but hopefully it will be worth it. If after all of that and my range of motion does not increase then Plan B is to have a treatment/procedure called external fixation. The simple explanation for external fixation is that holes are drilled into my bone, screws/pins are then put into the holes, and then a circular frame is put around my leg and attached to the screws/pins. The screws/pins are then turned in order to “lengthen” the bone. I’d have to wear this for at least 6 weeks, 24/7. In those 6 weeks I wouldn’t be able to wear my prosthesis and could possibly lose some degrees of extension (straightening my leg), which I wouldn’t be able to get back…and that would be a big problem. The surgery could also lead to an infection. Since the bottom half of my left leg consists mostly of skin grafts and other issues, I may be more prone to infection after surgery as well. But, the doc says that that could easily be managed. I hope. Obviously, the biggest problem could be that there are issues with the surgery and then I wake up with no knee and am a bilateral, AK (above knee) amputee. Let’s hope that doesn’t happen. Loooooord…..
So, I have to schedule my MRI, have the docs review the images, have all parties involved devise a surgery plan, coordinate everyone’s schedule, then schedule surgery…possibly end of January. Schedule #13. I’m not looking forward to it, but want to schedule it as soon as possible so that we can get it taken care of and move on. On the bright side, or maybe I should say on the dim side…being out of commission in the heart of winter isn’t the end of the world.
So, that’s the biggest/latest medical update.
Five days ago was the 1 year anniversary of my accident. “Observed” it by hosting a dinner in the city with some special people. Dinner and the company was great and I made it home without getting hit by a train, or a car for that matter. So, I guess, the night of December 26, 2014 ended better than the night of December 26, 2013. And I guess December 27, 2014 was better than December 27, 2013 for my friends and family.
Even though 2014 was filled with many milestones, I still feel like it was an unproductive year for me. Yes, I know…I’m coocoo. I realize that if I didn’t get into this accident, it’s not like I would have spent 2014 bringing peace to the world, feeding starving children, or anything else of that magnitude, but me being the psycho that I am, it felt unproductive. Irrational? Yes. Well aware. But all the “milestones” I had this year were only milestones because of the accident. Ok, that’s all with the negativity. I’ll get over it. I know I accomplished a lot this year. And I want to thank everyone for the support and love they’ve given me along the way. It is much appreciated. Let’s hope surgery goes well and that once I recover from it, I’ll be back on track and 2015 will be filled with even more milestones.
I hope everyone enjoyed the holidays. Ben and I didn’t get each other anything for Chrismukkah this year. We’ve ordered our new car…that was our gift to each other. Once the car is in, I’ll have to send it off to have hand controls installed. Car won’t be in until early February and then the installation of the hand controls will take a few weeks. Ben, or anyone else, will still be able to drive the car even though it will have hand controls. He can drive it with the foot pedals or choose to use the hand controls. It’ll be great when I can drive myself around. Scary and nervous as hell, but the independence will be awesome. Although I’m sure Ben is going to miss driving me around all over the place! Ha! =)
What else has been happening? Oh!..Ben and I went to the mall, without my wheelchair. That was exhausting. We only needed to go one store so I didn’t think it would be too bad. Boy, was I wrong! Going to the mall involves A LOT of walking. I never thought about how much walking one actually does when they go to the mall. Why would I? Walking wasn’t an issue. Going to the mall is good exercise for your legs and wallet. I had to walk through the parking lot, walk through the mall to the elevator (riding an escalator isn’t in my barrel of tricks yet), walk from the elevator to the store, and then walk around the actual store, except by the time I got to the store I was so exhausted I had to find a spot to sit down and rest so that I could actually walk out of the store. I popped a squat in the store and took a little rest while Ben returned the item in the store for me. Luckily, I mustered up enough energy to make it out of the mall, slowly but surely. Looks like I should still to online shopping for a little longer..or stick to small strip malls!
I’m sure there have been some other little things, but this is what I get for waiting so long to post something! Hopefully I’ll get better in 2015 with this. Sorry! I’ll need to write things down to ensure I don’t miss anything for you guys.
I hope everyone has fun tonight on NYE, whatever you might be doing. HAPPY 2015!!!

*Heterotopic Ossification – the presence of bone in soft tissue where bone normally does not exist.
*Neuroma – growth or tumor of nerve tissue.
*Medial – Pertaining to the middle; in or toward the middle; nearer the middle of the body. Medial is as opposed to lateral. For example, the medial side of the knee is the side closest to the other knee whereas the lateral side of the knee is the outside of the knee.

The Latest…

First off, I want to wish everyone safe travels on this nasty day and even if you’re not traveling anywhere for the Holiday..be careful! Luckily, I didn’t have anywhere to go today. Heard it’s really slippery out there. Yikes. Looks like I may have to switch to my winter footwear sooner than expected. Although winter boots and workout shorts (generally my bottom apparel of choice) are gonna look mighty odd…but I guess booty shorts in the winter in itself is odd. Oh well…
So, the latest…
I had some x-rays taken of both my right and left legs a couple of weeks ago and they revealed some good and bad news. Bad news – I’m probably going to need more surgery (on my left leg). FML. Good news – the surgery will probably help improve my range of motion and reduce some of the discomfort I’m experiencing in my leg. And it looks like my right side is ok.
Surgery isn’t confirmed yet as I haven’t seen an orthopedist. But, according to the opinion of my prosthetist, who has reviewed my x-rays, it’s very likely. Based on what he saw in the x-rays, part of my knee cap may have to get shaved down since part of it is sticking out…not like it’s poking through my skin or anything like that, but it doesn’t have as much skin graft covering that particular part so it’s more “exposed”. And it looks like there some sort of bone or something behind my knee that will probably have to be removed. It’s about 3cm in size, almost an inch..which is pretty big for something that you have to get taken out of your body. It looks as if that may be a big cause to why I can’t get my knee to bend more than 40-45 degrees. Now, having that removed may not give me full range of motion of my knee, which would be 180 degrees (I think), but if it will help get it to 90 degrees or even increase over 45 degrees, then it will be worth it. It’s extremely difficult to walk up down stairs when your knee doesn’t bend. Try it.
ASA has reached out to the orthopedist that they’d like me to see and once they hear back from him I’ll schedule and appointment, assuming he takes my case. And then we’ll go from there…I’ll update everyone as I find out more information.
In one month, it will be a year since the accident. One year. Guess I’ve come along way in a year…so I’m told. It’s true…I’ve accomplished a lot, but there’s still so much more to accomplish. Even though surgery will be a minor set back, hopefully the result of it will be 2 steps forward…
I try and go out now without my wheelchair. The last time I took my wheelchair with me on an outing was probably a few weeks ago and it probably stayed in the car. I use it less and less. Mostly just when I get up in the morning and in the evening when I’m preparing to shower and getting ready for bed. I’m proud of myself for being able to get around and not needing the wheelchair as a “crutch”, but it definitely leads me to push myself.
Funny story – we took a trip to Target last week after an appointment at ASA. I didn’t have the wheelchair, just my forearm crutches. I walked into Target and then we found one of those electric carts that I could sit in and drive myself around Target. I had spent 10 minutes on the treadmill during my appointment at ASA and this was probably going to be an hour or longer visit at Target, so I didn’t have the energy or strength to walk this time around. I got myself into the cart and Ben and I started perusing the aisles. We entered the Hanukkah aisle and then it happened…my cart broke down. I had turned into the aisle, stopped to look at something, then pushed the button to start moving again, and nothing. Uh…Ben,..I think we have a problem. What? I think I’m stuck… Forward, backward, nothing. I wasn’t moving. He asked if he could pull me while I pushed the forward button (like having a car in neutral)…nope. What do you do when you’re stuck in the Hanukkah aisle of Target and don’t have the energy to walk all the way through Target and back to the front in order to get a new cart?…Send your husband to get a new one and drive it to you, of course. After about 10 minutes of me just sitting in the Hanukkah aisle, blocking anyone from entering, (Sorry!..I’m constantly holding people up or in their way..it’s my thing, apparently.) Ben drives up in a working cart. “Oh my gosh, old people walking were passing me left and right..this thing moves so slowly!”, he says to me. Hah.
That’s all for now.
Oh, if you haven’t seen this yet…check it out!

Hope everyone has a HAPPY THANKSGIVING! Be safe!
Happy Thanksgiving

Week of 11-10-14

Usually, I go to PT at A Step Ahead twice a week but last week I only had one appointment. So, since my supervised exercises were cut in half, I thought I needed to take it upon myself to make up for that. In order accomplish that, I decided to attempt to walk to the nearest Chase with my mom, without my wheelchair and with just my crutches in tow. Naturally, I googled what the distance was from the apartment to the bank and how long it would “normally” take to walk there. 0.3 miles each way and about 7 minutes to get there. So, a roundtrip is 0.6 miles and should take about 14 minutes. My mom kept asking me if I was sure I didn’t want to take the wheelchair and if I’d be ok to walk that distance without being able to take a break in the chair. I said yes, but with a little bit of hesitation. After all, if I walked to the bank and back, successfully, this would be the longest distance, without a break (except for when I needed to cross the street), that I will have walked with my crutches. So, my mom and I were off. There were some slight nerve-wrecking moments getting off the sloped curbs in order to cross the street, but I made it to the bank in 32 minutes. I took care of what I needed to at the bank and then took a 5 minute rest in front of the bank in order to power up for the walk back home. It took 30 minutes to make it back home. The last half block home was a bit strenuous, but I was a trooper. I may have cut through Rite Aid to shave off those 2 minutes. However, I don’t think cutting through Rite Aid shortened the distance, but it did allow me to pick up the pace because walking indoors on linoleum is much easier than walking outside on cracked pavement. 0.6 miles in 1 hour and 2 minutes. It wasn’t easy though. I was exhausted and my hands, arms, back, legs, and butt sore were all sore. The sun was still out when we left the apartment and had almost fully set by the time we made it back, but, we made it back…and without needing the wheelchair to rescue me.
On Tuesday, I was still a little sore…but no slacking off allowed. I didn’t think I could do such a long walk 2 days in a row, so I decided to walk to the mailbox since I had to mail some cards. I made the walk to the mailbox this time without having to take any breaks. A few weeks ago when I did the walk, I had to stop twice before making it to the mailbox. Improvement. After sticking the cards in the mailbox, my mom asked me if I wanted to turn around and go back the way we came or if I wanted to circle the block and go back the long way. Sure, why not..I completed my version of a marathon yesterday, a walk around the block is nothing. It was a little warmer out this day than it was on Monday, so by the time I made it back to the house I was sweating all over the place, mind you…I had taken off my sweatshirt when we got to the mailbox and all I was wearing was a pair of short shorts and a t-shirt. My mom was in jeans, a t-shirt, a sweatshirt, and a light jacket. Sigh.
Another successful walk in the books.
On Wednesday, I went to my appointment at the plastic surgeon. This was a follow-up to my last appointment, which was a few months ago. We discussed how my skin has healed, how it’s still healing, and what my options are for trouble options that I currently have, and what my options will be if they continue to cause me trouble. When my legs are fully exposed, no shrinkers or liners, I’m generally very gentle, but sometimes when I’m at A Step Ahead or seeing any of my doctors, I feel like they’re manhandling me. I’ve gotten much better, but it still gives me a bit of anxiety…Gentle, people! There’s nothing that has to be done right now in terms of surgery, but we discussed what kinds of surgery that could/would be done, if necessary. We’ll try to address everything prosthetically at first, and if that doesn’t work then we’ll look into surgery options. Surgery would be the last resort because after 12 major surgeries, I’m not electing to have any operations or procedures and because any procedure would likely put me out of commission for at least a week, which at this point in my recovery would be a MAJOR step back.
On Thursday, I had an appointment for a “driver’s evaluation” at Abilities/The Viscardi Center, a non-profit organization that provides services for children and adults with disabilities. I wasn’t quite sure what the $250, hour long evaluation was for, since it’s pretty obvious to me that I need hand controls in order to drive a car, but off we went since it was necessary to complete this appointment before signing up for driving lessons. This is basically how the appointment went..showed up, the gentleman filled out paperwork for about 15 minutes in silence (with us sitting across from him), then he finally spoke and introduced himself. We then spoke about different types of hand controls and Ben and I asked some questions. After about 30 minutes or so in his office, we headed outside so that I could get into a learning car and see the hand controls in person. He and I got into the car and then he proceeded to tell me about how to operate the type of hand controls in that car. I asked questions and we sat in the car for about 20 minutes and then my “evaluation” was over. We exited the car and then he asked me if I was told about the payment. I said yes but didn’t have it with me so he told me I could just mail a check. I left still not quite sure why that hour was worth $250. So, the next day, prior to mailing out the check, I sent him an email asking what exactly the $250 covered. It covered the interview (interview?..ok.), the in-car evaluation (if that’s considered an evaluation), and my first driving lesson (ok..that works for me). Driving lessons cost $90. So basically $160 to sit in an office for 30 minutes and talk about why I was amputated, if I’m a right/left-handed, about hand controls, and then 20 minutes in a car. At the end of the day..it is what it is and everyone needs to get paid for providing a service…but I don’t know…$250 for not a lot just seemed a little offensive…
It took me a little longer than expected to get last week’s events in so stay tuned for a post on this week’s happenings…hopefully….