Tuesday, August 20, 2019

I Can Clean The Grail (NSFW and TMI. Not safe for work and too much information!

August 20, 2019

Another breakthrough!


In New York City many of the buses are switching to a payment system where you dip your MetroCard into a machine at the bus stop and it spits out a slip. Theoretically you just keep this lip with you and you could ride the bus. It makes things go faster because people can board on any door and don't have to dwell around the driver putting money or metrocards into a machine. The thing is, 99.9something% of New Yorkers can operate that machine. But only a little sliver of paper sticks out and I don't have enough strength between my thumb and forefinger to grab it so I have to use two hands but there's not enough paper sticking out for me to get two hands around it.

 But yesterday I did. I did not have to ask a stranger for help and I didn't have to dip my MetroCard two times to make the paper bigger.

I hang out with a lot of people with disabilities. not all of them are regular people with disabilities many of them are active people with disabilities and many of them are activists who are people with disabilities. when you hang out with activists you also hang out with a lot of their lawyers. I happened to be sitting next to an ADA lawyer and told him about my problem using that machine. He told me that I should continue to try to use it. Always dip my card in and try to get the slip of paper out. But if I didn't want to I shouldn't have to ask a stranger for help nor should I have to lick my fingers or use my teeth. He said that if the bus gets inspected I should respectfully tell the police officer that I will be defended by an ADA lawyer and this will be a federal case if I get a ticket. twice before we had that conversation I was on a bus without the ticket and showed the inspector my Acksress o ride Metrocard and both times they got frustrated and shrugged and walked away without giving me a ticket.

I might not be able to pull out that little slip of paper next time And I still might be the plaintiff in a federal ADA case . But yesterday there was just one guy who looked a little crazy on the bus because he was struggling to hold back tears of joy. It was kind of nice not to worry that I was going to be treated like a criminal for taking the crosstown 34th Street bus.






...................................................................................................................................................................

July 31, 2019

So a little bit more of a review. 5 years ago last May I went from physically fit to quadrophenia in a couple of days. I couldn't move my arms and legs. 135 days in the hospital. I came home in a wheelchair. then started using crutches a little bit of a cane and since then I finished three more marathons. But the nerves in my hands didn't really heal.

I've had five surgeries to recombobulate my hands and fingers. the first was to put a rod in my right wrist and the second was the transfer the tendon that used to move the wrist a little so I can have a little bit of control over my fingers. Now all the fingers in my right hand move together so I can't flip the bird but I can pick up a can of beer or a fork or pen or a toothbrush with my right hand now.

The third surgery fused the 4 knuckles in my fingers in my left hand so that they were more in a shape of a cup as opposed to being as functional as a paper plate on the end of my hand. We thought that was going to be the last surgery but I realized I needed to get my thumb out of the palm of my hand. We had two more. One to fuse the joint in the thumb to keep it in the open position and the second was to transfer some of the tendon from my wrist so I could literally open my thumb.

Those five surgeries are done and I’m unlikely to have any more unless science figures out some new way of recombobulate in me.

This might sound weird but the one thing I can do now that I couldn't do five years ago or five weeks ago is put deodorant on both my armpits by myself. Yeah, there might be many ways of defining yourself as a human being. but one of them for me is being able to put a little Old Spice on my armpits without asking for help.


Yeah, the cast is off and I'm back in occupational therapy. I prepared myself this time by thinking of what goals I had.
  • Opening pistachios
  • Safety pins
  • Pulling up my pants without having to put both my hands inside the elastic waistband and touching the Holy Grail is good. But doing it without having to lay on my side would be better

    Update January 2019


    I have to give a shout out to two life-saving products First, the Aqua Total Hygiene glove.  It is designed for bathing but it makes it possible for me to achieve toileting. And then of course there are Shittens, the as seen on Shark Tank life-changing product that has changed my life. Yes, changed my life! 

    The sole purpose of my third surgery was so that I can turn my wrist and bend my fingers in the position necessary to wipe my own ass. But it's going to be the next surgery that will allow me to hold toilet paper with my thumb and the rest of the fingers. So I'd like to thank the makers of these products for allowing me to go out and travel without looking for the never to be found bidet in a public place. Thank you, for creating a product that means I don't have to rush home to use my own bathroom. Thank you, for creating a product that means I don't have to spend every not home moment worrying that I might have to rush home and use my own bathroom.

    New Sponge Exfoliating Back Strap Natural Loofah Bath Body Scrubber BrushAnyway, in case the above products are unavailable or I'm not around functioning bidet I can always take a shower and floss myself with these. I get them on eBay for $.99 apiece.

    Next week I have surgery number four. It's the start of getting an opposable thumb back on the left-hand so I won't need any of this crap to clean my crapper


    Update October 2018

    It's been a while since I updated this. Last November I had a titanium rod installed in my right wrist to completely stable as it and then in January I had a tendon transferred. The surgeons disconnected the tendon that used to move my wrist and attached it to my fingers. So with my right hand I can open and close my fingers but I cannot move my wrist at all. Things this allowed me to do as long;
    • I can easily use a fork or spoon or a pen
    • I can reach for things and hold them. Things like cups and telephones and peoples hands
    • it's easier for me to open doors
    • I can confidently use a credit card or a MetroCard
    • I have an easier time using a touchscreen phone or a remote control
    But the rod in my wrist is at a 15° upward angle. It helps me do all the above things but it prohibits me from holding my hand down. There's one very important thing that I cannot do with my right hand that makes me care very little about the things I can do. Occupational therapists call it "toileting"or, "being independent in the bathroom". Let me put this into regular adult language. Since May 7, 2014 I have been unable to wipe my own ass. I've been dependent on healthcare workers and installed a bidet in my home. Traveling has been tough because I have to have these things installed at the hotels I go to or in the homes of the people I stayed at.

    My left hand was in worse shape now my right hand. The wrist worked poorly in one direction only. If I hold my hand out and face my palm up I can lift my hand. But if I turn my arm over and have the palm face the ground I cannot lift my hand from the wrist. Also, the axonal nerve damage going to the fingers in the left hand was pretty bad. Atrophy kicked in and the fingers pretty much stiffened up in a very open position. So after consulting with amazing surgeons and occupational therapists we decided to put some screws in my fingers so instead of them being stuck in a useless position they are now stuck in a useful position. You can't really tell from the x-ray which was taken from above, but four of my fingers are now permanently bent at a 75° angle. My left hand is permanently cupped as opposed to flat as it was before the surgery
    So yesterday the cast came off and as soon as the surgeon gave me the green light I took my new hand out for a test drive or a "dry run". It worked! It worked! I didn't cry then, but tears are running down my face as I dictate these words into my computer screen.

    A couple of years ago I had a good talk with my friend Josh about my rehabilitation. I told him that all my breakthroughs in abilities were nothing without the ability to white my ass. He understood and referred to that activity is the Holy Grail of rehab

    A couple years ago my son told me I was a toddler because a toddler is defined as a human who was learning to walk. He told me I was the toddler anymore when we finished the New York City Marathon together. I was very proud of finishing the marathon but I still felt like a toddler. Toddlers can't independently go to the bathroom.

    So dear reader, tomorrow I will attempt to finish my 32nd marathon. My third since recovering from GBS. Tomorrow I'm going to leave my house knowing that I can use any bathroom I want.Can you imagine a good that feels? You won't have to use your imagination because I'll update this blog and let you all know how it "goes"when I reach my "#2 goal"





    Update: November, 2017
    I might've finished a marathon three weeks ago, but that was a leg thing. They don't work that well but I was able to make them work for 9 hours and 52 minutes. But my hands are almost FUBAR, [Almost Fucked Up Beyond Any Repair]. My elbows work fine. But my wrists and fingers not so much.

    If I hold my arms out with my palms facing towards the ceiling I can lift my fingers up. But if my palms are facing down I cannot tell my hands upward. I can make a fist but there's not much strength behind holding the hand closed. Also, the slightest amount of pressure can stop me from opening my hand from the fist. That adds up to not much function. When I reach for things my hands hang limply from the wrists, and when that happens I can't close my fingers. It's been 3 1/2 years since  GBS took the motor function away from my hands and my neurologist told me that at this point no amount of time or Occupational Therapy is going to bring them back.

    So it's time to make what works work better. And move around the working parts to bring some function back to those fingers. Two weeks ago I underwent surgery to fuse the joint in my right wrist. Now when I reach for something my hand does not flop down, it stays straight and I'm able to close my fingers. When that heels I'm going to have the tendon used to move my hand around moved to the back of my hand so it opens up the fingers.


    To the left is a picture I was able to take of my right hand before surgery. That's me trying to make a fist or trying to lift my hand, it looks the same. To the right is what they did to my hand.

    It's been a little over a week and I still haven't had the stitches removed and it still in a cast. But now I don't have to put a contraption on my arm to hold a fork, a spoon or a pen.





























    Update: October 17, 2017

    Another surprise update in that I got to regain a little part of normal life without thinking about it. Coffee. Coffee! Yes coffee!

    When my kids were born I immediately started using a travel mug to drink my morning coffee. I just figured a lid would be a good way to protect my coffee from my kids. Oh, I'm sorry I mean protecting my kids from the coffee. Then I got to realize that I like it that way because I can take my time and it would stay hot. In the hospital they often woke me up at 4 o'clock in the morning for medication or just to make holes in my arm and then I wound up being awake until they brought breakfast at 8 AM. I had no problem ingratiating myself to the nurses so that they would bring me coffee from their personal pots. But I didn't want to make them stand there and bring it to my lips so I drank it with a straw.

    I kinda got used to drinking everything with a straw.  I guess weaned myself off of using straws for cold drinks. And a while back I announced my happiness when I was able to hold a beer with my hands. But at home I kept a straw in the coffee. I'll have to admit it never occurred to me to stop using the straw because I had so many in the house. But last week I had one left and I figured I wouldn't buy any more straws. And so this morning I just drink my coffee out of my travel mug like a regular person. I think I'll be using the travel mug for a long time. I like my coffee to stay hot and since it takes all ten fingers to hold the mug, I don't need to burn myself.

    One more small step towards getting my regular life back.


    Update: June 2, 2017

    I didn't think I'd be updating this again for a while, but today I had a little breakthrough. Using a credit card is a lot easier than cash because paper money and coins tend to fall out of my hands. It's much easier to just hand my card to the salesperson. But sometimes you have to handle the card yourself. In those cases,using the chip reader is a lot easier than swiping because it's easy to stick the card in the slot wait a moment and then pull it out. 

    But until today, the ATM machine at my local bank didn't really work for me. You have to insert the card and pull it out rather quickly. My fingers haven't been that good at pulling it out rather quickly. This challenge hasn't stop me from trying, but if I try to many times the card will not work anymore. But I'm not shy, I had no problem going into the bank and asking the nice manager for some help.

    But today, I forgot that it was a challenge. I just walked up to the machine stuck my card in and out in the proper amount of time and then press those little buttons and got my hundred dollars. #FUGBS


    Update: December 10, 2016........................................................

    As a review, I walked into my doctor's office on May 7, 2014. She set me straight to the hospital with a little note that said I had Guillain-BarrĂ© syndrome and by that evening I was unable to stand on my own. When you can't stand you can't stand in front of the toilet. So in the hospital, and in rehab, and for a while after I got home, I had to use a smooth wooden plank to slide from a wheelchair onto a rolling commode. A few months after I got home I was able to keep the commode over the toilet and get myself there with a walker. But all this time my hands were healing much slower than my legs so when eventually I was able to get on and off the regular toilet I was still unable to cross the finish line and use toilet paper 

    So while I came home from rehab on September 18, 2014 I haven't been independent in any sense of the word. It was about a year before I was able to use a fork and a spoon myself, or bathe myself, or brush my own teeth. But in the year beginning the summer of 2015 I slowly gained the ability or purchased the tools so I can handle most of the activities adults take for granted. I had the round doorknob replaced to the back entrance of my apartment building with a lever and a pushbutton combination lock so I didn't have to use a key. I also put a giant rubber band on my apartment door so I can pull it closed and got a funky keychain so I can get in and out of my own apartment without leaving the door unlocked. So basically, by the end of the summer of 2016 the only thing that kept me from spending my days alone like an adult was the fact that if I needed to use toilet paper I would be as they say 'Shit out of luck.' 


    So I figured out which bidet would work for me and had it installed. Then my wife and I were figuring out all the other little details that would need to be arranged for so we wouldn't have to pay someone to hang around with me all day. We bought a new coffee maker (I'm sorry planet Earth we got a Krups machine) .... Figured out how to leave the lids a little open so I can have lunch. I even asked the staff at the YMCA where I work out if they would mind helping me with some of the contraptions I need to pull the bars on some of the devices (When they smiled and just said "that's why we're here", I was overjoyed). One of the last little humps that I had a figure out how to get over was putting my own socks on. You wouldn't think that would be that hard except I still don't have the grip strength in my fingers to pull them up.

    If you've been paying attention to my blog you would've known that on September 25 I fractured one of the little bones in the foot. I didn't need a plaster cast, but I did have to wear a boot that was secured with Velcro straps. Since the neuropathy in my hands hasn't healed as well as my feet I was unable to get that boot on and off. But earlier this week I was given the green light by the orthopedist to just take it easy wearing regular shoes.
    So, exactly 31 months from the day I walked into my doctor's office and was told to hurry up and get to the hospital because you have a life-changing illness, I walked out of a different doctor's office knowing that I can begin to resume a normal life. This week I was able to say goodbye to the person that I had hired two years ago to help me do almost every activity I needed to do. Now, I can wake up, get out of bed, and do everything you do in the bathroom. I can make myself coffee, get dressed and leave the house. I could choose to go to the gym or take a bus or subway in a different direction. With a little bit of advance planning I can go into a restaurant and by myself lunch or go into a grocery store and bring some food home. 

    I can compare my disability to slavery and institutional racism. But I think I can appreciate what it's like to have your freedom restricted.


    Home Alone

    Out Alone

    Fuck you GBS

    I'm free at last






    Update October 22, 2016 .....................................................

    It's been a long time since I updated this post. Maybe too long. Maybe I should've bought a bidet months or years ago. But now I have one.
    Now that I purchased this model from
    Overstock this pops up as a Facebook ad.

    So my dear reader, you only have to use the tip of your imagination to think of the indignities I had to go through about once a day because my fingers and wrists are is about as useful as a big of carrots. 

    Now, I can get on up whenever I want to go, as long as a home. 

    It might be a long time, if ever before I get to update this post again. But a lot of people only sit down on their own toilets....

    ..... And if anyone says I told you so, I'm you spend a few days at your place thanking you....



    December 2015..................................................................................................................................

    On the third to the last time I visited my friend Paul in hospice, I witnessed something no one should ever have to see. We were chatting for a while he asked me to hand him the buzzer for the nurse. We ran so many miles together he didn't ask me to leave because he had to pee. When the nurse came in he said he needed some help getting to the toilet. She then said something like, "We talked about that Paul, remember what happened last time, your legs are too weak, we have to bring you a bottle."  Nobody should ever be in the room with someone who was told they already stood in front of the toilet for the last time. 

    Fast-forward a couple years and I'm in the intensive care unit this time. Remember, I walked into the hospital, but once I was there they did n't let me walk around too much. The morning of my second day I buzzed for the nurse and told him I had to pee. I made it to the bathroom but when they let go of me in front of the toilet I almost hit the ground. They said after this we'll bring you a bottle.  In that moment I was with Paul again

    For a couple weeks I was able to hold the bottle, and then neuropathy started to affect my hands worse. For four months while I was hospitalized and a few more months at home I couldn't even stand and be at the same time. Then for a while I was able to stand, but I didn't have the hands to deal with the rest of the process, so I still needed a person and a bottle. A couple months ago I was able to work out the process of peeing, but pants with zippers and buttons not so much.

    Last night I decided to push the envelope a little. For the first time in almost 19 months I just got up, walked to the bathroom, took a leak, and came back to the living room without asking for help. This is big. This means, that if I wearing the right kind of pants I could use a public restroom by myself.


    October 2015............................................................................................................................................

    I need to give this one more update. And it's also time to describe some of the processes I had to go through in various hospitals.  You don't really have to read this, because it is NSFF(not safe for work) and TMI (too much information)

    When I went to the emergency room I was just wearing shorts and a T-shirt. I difficult to be moving.  I actually get my shorts on for about five days in intensive care. Then one evening a couple of nurses aides came over and said hey you want to take a shower? I had been out of bed and for five days, and wasn't thinking much about showering but it sounded like a good idea. They put me onto a thing that was like a combination of a wheelchair and a beach chair. They rolled me into a little room that had a shower and then they peeled me out of my clothes. I said out loud goodbye dignity", because I actually sort floating away like a balloon into the hospital  For the past year and a half I've been struggling to get it back.

    Where do the boy parts go?
    When I walked into my doctor's office back in May 2014 I knew I had problems. But one of them like was myself. Prior to all the weakness that occurred in my arms and legs, I had incredible pain. Kidney stone level pain. And I've had kidney stones and have been told I be prone to more. So I keep oxycodone around. When I had this pain I self medicated little. I didn't know that oxycodone doesn't work on nerve pain, but since the pain to go away I just took more oxycodone. It didn't help, it did make me happy but it did make me really constipated. So being a quadriplegic and totally clogged up was not a fun combination. All my fifth day in the intensive care unit I mentioned to my nurse that I got a problem, that I had not pooped in five days. She said yeah we know if nothing happens tomorrow it's all of our problem. So in the middle of that night I rang the bell.

    So.....I'm in intensive care and having gotten out of bed or pooped in five days. They bring over this chair with a little hole in it and tell me that they will help me get on it. I look at it and say "but where do my boy parts go?" The nurse says don't worry about it do what you gotta do. Okey-doke he but IP when I poop. So they hit me up on that thing, but as I predicted I became a frigging fountain. Sorry.

    The constipation all effects of the oxycodone lasted for about a month. I stayed on a once a week schedule during that time. In acute rehab they had better rolling commodes with my boy parts, and they actually rolled me over a real toilet. But the first two out of three poops I had at Rusk required a plumber after I was done. I don't know about you, but have ever were able to look back and say holy shit that was the biggest poop I ever had. Well, I looked back and four turds and each of them was the biggest crap I ever took in my life.

    Yeah, I got regular and came home from the hospital.  That was 13 months ago. But I still needed a sliding board to get over onto a raised commode. It took me a few months but then I was able to put the commode in the bathroom and use a walker to get to it. Then the walker became unnecessary. But, I couldn't even stand in front of the toilet.

    So in the spring I was able to pee standing up. It was really exciting to recycle that portable uranal.


    A few weeks ago I started up Occupational Therapy again. It's great. I'm just ask questions like what do you want to do that you haven't been doing. There's been so much I've been afraid to try, but lately I've learned that I can yes drink from a glass, no more beer through a straw.

    The third week of OT I said that I didn't know if I could get up off a regular toilet. So we tried it in the therapy gym. Without holding onto anything and without taking my pants down I easily sat down on a toilet. And then I got right back up! FUCKING WOW. 

    Yeah, I still need a little help in the bathroom with those things that require fine motor skills from the fingers. But raised arm commodes and urinal jars are behind me. (Pun intended)





    August 2015..................................

    life's been getting better, been spending four or five hours out of the house it any given time. I just have to make sure I go before I go.

    April 2015 ...................................

    I wrote this post below back in August when I was in rehab.  Lately, I've been posting about my progress how far I can walk the fact that I can handle a flight of stairs now.  But my whole day revolves around personal needs that I need help with.  I don't need a sliding board anymore, but I can't just go anywhere.
    ...................................................................................

    Written from rehab in August 2014

    Sometime in the next 24 to 36 hours you're going to feel the need to go to the bathroom. You're going to get up, go to an appropriate place, take off an appropriate amount of clothing, sit down for an appropriate amount of time, and when you're done you're going to clean yourself. Hopefully get up and wash your hands leave the room and move on with life.

    If you are a believer thank your god that you can do this without pressing a button, and calling for help, using a sliding board and a commode chair that was specifically adjusted for your height. If you're not a believer just don't take taking a shit for granted.


    5 comments:

    1. This comment has been removed by a blog administrator.

      ReplyDelete
    2. I thought you'd find this interesting
      http://www.villagevoice.com/news/why-does-the-mta-refuse-to-work-with-a-nonprofit-that-donates-rides-to-the-poor-8006386

      ReplyDelete
    3. People have no idea what life is really like living with disability. Dignity is the one thing I l felt I'd lost fpr the longest time. The indignity that comes with the loss of bladder and bowel cpntrol is overwhelming, especially if limited funds leavr you with limited options.
      Id love a downstairs loo with one of those fancy loos that wash and flush . Instead a comode in the hall has to suffice. Going out you check theres access before you attend. Friends you visited able bodied now become inaccessible. That or be subjected to more indignities. It's a subject people shy from. The catheter and devices, the awful pants all make me feel less feminine. Still I count my blessings that my situation now doesn't require another person' to assist in the main but challenges remain all because society does not see this subject worthy of awareness or more funding.

      ReplyDelete

    You do not have to be nice!

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