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11 Year Anniversary

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    11 Year Anniversary

    I don't know why we call it an anniversary, but it's a day we really never forget, and today is mine.

    On Tuesday March 7, 1995 I had a massive grand maul seizure that lead to the diagnosis of Transverse Myelitis. Going from she might not live through the night to four days in a coma I came out of it with minimal use of my arms. On top of all this my Lupus was out of control so I was unable to go to Craig. Months and months of rehab, hours and hours of homework in my hospital room so I didn’t get held back, I was released in June to outpatient rehab.

    I never thought I would be in a chair this long way back when. I still wonder once in a while if the school had reported me missing or if someone had been home with me, maybe I would have gotten more recovery back by getting to the hospital sooner. Who knows? I became a very shy, but busy teenager. Instead of softball, basketball, and volleyball I put myself into a lot of school activities, mainly I think to forget. The busier I stayed the less I thought about the chair. It was when I graduated high school and took a year off was when I dealt with it all. After that I went back into lifting weights and then started college.

    It was going good until 2001 when my Lupus relapsed. This time really badly getting into my blood stream. I had numerous blood transfusions, Procrit shots, etc. Anything to keep my hemoglobin up. I finished out that school year and then had to quit, as I was just too weak. While my immune system was down I got a horrible pressure sore on my tailbone and I couldn’t heal it with hemoglobin on a good day was at 9.0. My plastic surgeon suggested surgery that June. It should have never been performed. He operated on me with my hemoglobin at 7.0. The surgery didn’t take and I spiraled into getting sicker. I then had to get a new doctor cause I was close to killing that one!

    Eight years to the day of my first seizure I had another one on March 7, 2003. Ironic isn’t it? I didn’t lapse into a coma, but was close. I didn’t know who anyone was, where I was, or who I was. It took a good week to two weeks for me to come around after being on Phenobarb. That pressure sore ended up with MSRA and Osteomyelitis in it after first doctor insisted it was not infected. My new plastic surgeon put a wound vac on it and said he would NOT operate until my Lupus was under control and my Predisone was under 5mg. Almost two years of being pretty much bed ridden I had surgery in November 2003 and after 7 weeks in the hospital the flap surgery finally took and I was a FREE woman and Lupus free!!

    It’s March 7, 2006 and my Lupus has been in remission for just over two years. There are no signs of it. Knock on wood! I think my new Lupus doc has me on the right medications that keep my Lupus calm and me off Predisone. He knows NOT to piss me off. Smart man he is and he has a sense of humor, which helps A LOT.

    A lot has happened in the past eleven years. Through all this I have become a stronger, bolder, not so shy woman. I don’t let anyone walk all over me, I tell you how it is and if you piss me off you will most likely never do it again.

    It’s been an up and down eleven years for me. Friends come and go with a life like this. It’s something I have excepted. I thought getting sick was the worst thing, but nothing was worse than the broken heart I had that this summer. It still bothers me, but I know I must move on. I have yet to find that special guy that can deal with it all. I hope he is out there.

    I’m still very hopeful that cure is out there somewhere. I know it will never be the same, but some function would be better then none. If some politician’s that shall remain nameless get their heads out of their ass then maybe that cure will come sooner than later.

    Last year on my tenth anniversary I didn’t even realize it was here until someone asked me how long I had been in a chair. It hit me hard and I cried for the rest of the day. I think I forgot about it because the night before I was seeing Papa Roach and my friend Jerry with the help of a couple security guys got me up on his shoulders in front of the stage. I got hugged and kissed by Jacoby, the lead singer while up there. It was hella cool and is something I never thought I could do. After being up there and NOT falling and what a rush that was I am more willing to try more daring things.

    At my eleven-year anniversary my new truck arrives. I’ve waited a long time for this. The amount of freedom and independence this truck is going to bring me will be HUGE. I can’t wait where I can just get up and go for a drive without even thinking where I am going. Just to go will be totally rock on! I’m hoping to get back into rehab this summer. More weight training, more things moving my legs, and after that I want try and get into Craig or Shepherd and look at possible stem cell therapies in other countries. If the United States is going to pass these breakthroughs by I am willing to go somewhere else for them. I will more than likely cry at some point during the day...haven't yet, but I am keeping myself busy. Going to a radio station party and off to a concert and drinking with boys. It will be a fun day.
    "Dream as if you'll live forever, live as if you'll die today." ~ James Dean


    There are a handful of people on this site who I regularly think of when I'm upset, angry, not in the mood to pull my finger out and just get on with life or ready to pack it in.

    You are one of them....

    True story

    I went to see a mate's band in concert recently....I rang on the day to check the lift was working to get me to the basement venue and set out with some friends to meet up at a restaurant beforehand.

    For all sorts of reasons I didn't feel like going but I had promised my friend.........I plastered on a fake smile and had a few beers, began to feel normal again. Then we got a call from my friend who was soundchecking - the lift wasn't working.....all my negativity came flooding back, my face fell, my friends all felt guilty, I was going to get a cab home and wallow in being a crip who brought a downer on the evening.

    Then I thought about all your concert pics, your posts about being carried here and there and I thought 'fuck it' - said to my friends that we would find a way. Got there and persuaded two HUGE bouncers to carry me down in the chair - took four of them to bring me back up - I didn't get the nickname Rhino for nothing LOL.

    Point is.....I had a FANTASTIC evening and didn't let the chair stop me....soooo many people have mentioned it since, how my injury hasn't stopped me partying blah blah. It was a turning point in my attitude.

    Thanks to you, genuinely
    C5/6 incomplete

    "I assume you all have guns and crack....."


      For all that you have been through - and I didn't even know a fraction of it - you appear to be one helluva positive girl. I thoroughly enjoy reading all about your latest adventures. You know what you like and you make sure to get to do what you like, and in the process I'd say that those around you have a good time too. I think your truck is totally fab and wish you great fun cruising around your home stretch and further.
      No need to say enjoy your night out - sounds like you have it sussed!


        Wow Kristi, I didn't realize you'd been through so much crap. I think the way you never complain is great. I'm a top class moaner, but you are the opposite. A very much life is for living type.

        You're top quality, Kristi!

        PS - Hope you are going to get your ass back to Beautyability very soon. We're waiting for ya!


          Kristi, you filled me in on most of that when we talked on the phone.
          I couldn't imagine so much pain and drama for so long, but through
          all of that, you have still managed to be a sweet, hot, bubbly girl,
          who I would love to bang and tell all of my friends about.

          I hope you can relax and not let memories get you down. I can't wait
          to hear how the truck drives. Later Kristi.

          Word to your mother


            A big for Kristi...You've been through a ton, glad that Lupus isn't rearing its ugly head...It has felt the wrath of Kristi, and wants no more

            For those that don't already know....Me and Kristi are gonna put together a football show...She rants, and I produce....We'll be a crazy


              Hang in Cowgirl,,,,,,,, not easy but .



                hey K, thanks for the info. i am so glad that the Lupus is under control... that is such awesome news.. you are going to enjoy your truck so much and you are so deserving too... if you come to Shepherd, you'd be in my 'hood.. we'd definately hang and big surprise... see a concert..

                Life isn't like a bowl of cherries or peaches. It's more like a jar of jalapenos--What you do today might burn your ass tomorrow.

                If you ain't laughing, you ain't living, baby. Carlos Mencia


                  Y'all that was so sweet! I'm so freakin tired today. I didn't get in all that late. I was totally numb yesterday with the passing of Dana Reeve and Kirby Puckett and it being my day. Went to a metal show and can barely hear today. It, but it's always fun taking a road trip with my buddy TR. He even gave me a pretty ring yesterday for our "fake" engagement. Don't's a weird situation...LOL!

                  I could write a book on what I have been through these last 15 years since being diagnosed. Maybe someday I will. Been in the hospital too many times to count. Those stays are never fun, but I came out of every one...that's what matters.

                  Rhino...wowie! I'm touched by that story. Ya know had ya NOT gone to that concert I would have found a way to kick your ass even though there is an ocean between us. I'm glad ya went...stairs or no stairs...lift or no lift. That's what those big bouncers are for. Glad you had a good time and start posting about your concert experiences.

                  Oh romantic you make it sound. You make me laugh...that's a great gift!

         got it. Thanks for letting me know about it. We would be a hit! What is our TV show going to be called?

                  Jeffers...Sheperd would be first on my and Collective Soul are there...and well of course you. A lot of cool night clubs, shows...and friends there...y'all would have to break me out on weekends!

                  Keps...I'm sure I have complained a time or two to someone. More like bitch would be the word I use...but it's all good now.

                  carbar...thanks for your words and FreeJ a just for you and being a Cowboys fan!!!
                  "Dream as if you'll live forever, live as if you'll die today." ~ James Dean


                    Hey Kristi,

                    It's been a while and you almost gave me a heart attack with your story.

                    Best go back to and get one of those supersized dogs

                    Han Tacoma

                    ~ Artificial Intelligence is better than none! ~


                      OH MY GAWD!! You got a picture of the MALL in Sioux Falls!! Those pictures are going to haunt me for the rest of my life!!!
                      "Dream as if you'll live forever, live as if you'll die today." ~ James Dean


                        Hey Kristi ~

                        Hope you're okay. Reading your story - minus the Lupus - we have so much in common. The TM, young age and the pressure sore flap surgery (I had mine at 15). I shut down during my teenage years, whereas you involved yourself in school activities. Same thing though - denial - I'm not disabled, I'm not disabled. lol Hey it worked for me.

                        I think you have a terrific attitude, one that will serve you well in life. Strong women need a few solitary moments in life to gather themselves and carry on - you take all the time you need today. Mr Right will be damn lucky to even know you!

                        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12



                          What a story!

                          "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang


                            I don't wanna get all sentimental and stuff, but...I guess this is as good time as any.

                            You are a strong, beautiful, outgoing, CRAZY woman,...and I am glad we have become such good friends over the past year or so. We've had some good times...and cried together when things weren't so good. I'm always around when ya need me.

                            If there is light
                            it will find

                            --Charles Bukowski


                              Kristi rocks.
                              Does This Wheelchair Make My Ass Look Fat?