Once again I’ve been slacking in my duties as a Blog Master, (is that what I’m suppose to call myself – sounds important anyway) so I’ll attempt to fill everyone in on recent developments. First, Kathy and I want to thank everyone who has contributed to the bank fund that is allowing us to participate in this wonderful program here in India and those who have supported us with their love and encouragement. We haven’t been able to go to the bank and to get the donation records to thank you personally so we wanted to take this moment to give our heartfelt thanks to all who have helped us. Without your support we would not be able to be here and for that you have our gratitude and appreciation. Thank you!
Yesterday was another lost day. I felt weak and had other issues that I’m sure people don’t want to read about. Never the less, I spent the day taking IV fluids, having medical attention applied to parts of my body, feeling sorry for myself because I couldn’t participate in needed therapy, and trying to understand signals my body was sending to my brain.
Since last week’s procedure my body continues to have strange, exciting and painful impulses coursing through it. Immediately after the procedure I felt a “heaviness” in my front pubic area and this feeling is constant and has stayed with me. Dr. Ashish is excited and hopeful that my bladder is finally starting to reconnect, but we are unable to test this aspect as I have an in-dwelling catheter in for the next two weeks. There is a band of tissue, stretching from hip to hip and 3 to 4″ wide in my lower back that started producing a constant tingling and sometimes painful sensation the last couple of days. This is below my level of injury. It seems so weird to have these sensations after having none for 9+ years. This band of tissue has intensified the nerve impulses it is sending to my brain the last 2 days. Along with the tingling pain (sometimes very intense pain) sensations, my lower body is having a lot of spasticity - in my butt, legs and feet. Sometimes I can’t keep my feet on the foot rest of my wheelchair. It seems equally weird to actually complain about these sensations when they have disrupted the normal “nothing” my body is used to feeling.
Today, I discovered I was actually able to use muscles associated with my bowels to help with my bowel program. I’m sorry, I know this is not a normal topic of conversation and most people couldn’t care less about my program, but this is an enormous achievement in my journey to regain function. The #1 desire of people with SCI’s is to regain sensation and/or control of their bladders and bowels. This was the one thing we were hoping to gain through Dr. Shroff’s stem cell program when we came here. We can only pray that there will be further developments along this line. Dr. Shroff told me this morning that this was my biggest and most important achievement and if nothing else happens I had regained some bowel control! She advised me to stop worrying over my lack-of-progress with standing and rejoice for what I do have. This has been a re-occurring theme for me, and I think others, as we tend to focus on what we haven’t achieved. Easier said than done. I’ll have to give this one to Dr. Shroff (by the way, her new haircut looks very nice). Thank you!
My wife went shopping with Louis Miceli’s wife, Amy Rupert, today. Louis and Amy know a family here and the wife is taking Kathy and Amy shopping for Indian clothes. God knows Kathy deserves to get away from having to care for my sorry butt, and it will be interesting what they purchase. Dr. Sudeep Sharma, from the other hospital at Goutam Nagar, made an insightful comment about Kathy and her calmness during the problems we experienced when my urethra tore — you can read it in the comment section. She really is a beautiful person. Kathy has stood by me for over 30 years now and through all sorts of hell that I’ve put her through since I got injured in 1998. I am an extremely lucky man to have her. Thank you, Babe. I love you!!
Love you!!
YEAH!!! I think the bowel info is great – what a nice surprise! I agree with Dr. Shroff – this is definitely something to be thankful for. You can only do what your body will let you do, and right now you need to concentrate on feeling better and feeling in general. I can’t wait to hear what mom buys – sounds like fun! Feel better, stay positive, and talk to you soon! Love ya!
You’ve been on my mind, so it’s good to hear how things are going again, thank you. We are so happy to hear that you might be regaining some control, and with all the sensations you’re feeling, who knows what’s possible? Blessings on you both!
It’s snowing here. Again! Who’da thunk it? We’re getting a real winter here this year and it was 66 in Boston yesterday!
Lesser persons would no doubt be tempted to “throw in the towel” after such a set back. I know you won’t for more reasons than I can count. It’s a helpless feeling for those of us (actually an army of us) on the sidelines who wait, pray and hope.
Maria in City Market Pharmacy asked about you and Kathy and sends her best wishes.
Much love, Mom
Hang in there Rusty!! From where you started just a mear month and a half ago…you have come a long way!! It seems that with time and patience you will get the dream. Remember you told me that you can’t get your hopes to far up. I think you have pasted what your goals were to start….now just move that bar a little higher.
Everyone at work has asked how you are doing…and they send their thoughts and prayers!! Susann
Hey, every little step forward is progress. Keep up the good work; your miracle is awaiting.
Thanks for the pictures and updates I won’t be able to check in again for about a week, but daily my prayers are with you, as well as warm thoughts and hugs.
Frannie
Based on your very first blogs I think you are way past what you even expected on this first time around. Keep the momentum going and your eye on the prize.
Yes, you do have a keeper in Kathy
Here’s more sisu,
Susie
Heck yes! I think most of us DO want to hear about your bowels and bladder–thank you for being bold enough to talk about it on your blog. Do you actually notice a difference in your ability to do your program now that you have the use of some of the muscles? or is that still a ways off?
You still have a couple more weeks there, you will make the best of it while recovering!
Love you
Kari
We’re so relieved that things are doing better, sorry about the setback, but hang in there! We have a high praise for Indian medicine and Dr’s so thank goodness they were there to help you! And don’t worry about talking about your bowels, heck who does’t worry about their bowels at our age! Love to both of you..we want to come to the next soup party…Feb/March? Can’t wait to see you and hear all the stories.., Love Mary
Hang in there Rusty and you too Kathy our prayers are for healing your tear and for twice as much sensation and feeling everywhere….4 inches of snow here in Rifle and more to come…we are going south to Arizona where we bought a house….you know Kathy it is the time to buy…have been following you’re story almost daily…Trina has gone to GJ her dad had prostate surgery Monday and her mom had 3 stints put in her heart Tuesday…double duty…I have cat, dog and bird duty…have told your story to many freinds…brings tears to my eyes every time…take care..
Kirk & Trina
It sounds like one step backward and 5 steps forward to me. You hang in there and keep feeding on the positive fibes all your family and friends are sending. It brings a warm glow to hear of your advancing “steps”. As far as the pain you describe, even though it has to be excruciating at times I’m sure, I hope deep down it’s one of those “it hurts so good” feelings. I know before you left you had said one of your primary measures of success would be to gain bladder and bowel sensation. Hopefully the many prayers are being answered. The both of you are extraordinary people and have displayed this ever since I’ve known you, which has been a year or two.
Thank you so much for taking us all along on this exciting venture.
Our love and prayers be with you,
Ray & Christy