15 replies to this topic

[halobear11]

Hey! My name is Savannah, I'm 19 years old and in about a week I am returning home (Oshkosh) from a very long stay at Aurora St. Luke's Hospital in Milwaukee, WI.
This will be the first time I will be out and about in public with a wheelchair (my injury is around the T6 area). Since insurance is making this huge push forward for me to leave rehab, I'm quite nervous about the transition from the hospital to the "real world." My bowel program/incontinence still is a big issue, and simply not always having someone in front of me when I slide board transfer will be something to get used to. I was wondering if anyone had any tips for going back? Thanks in advance!

~Savannah

[airart1]

you'll be ok, i got 2 friends that are T6 and they do as good as i do at T12...........just take your time and dont fall, just need some getting used to the change, u'll do away with the transfer boards in do time and it will be old hat in a few months.......routine for the bowel-bladder, remember what goes in has to come out, regulate your diet and intake, i gauge my bladder by just how much i drink actually more than a schedule, the bowels will come in time, regularity is the key.....and exercise as much as possible, rebuild that strength........

[S&W Winger]

I wish you well with your homecoming! Hope you don't stress too much...just take it all "one day at a time" and give yourself a lot of breaks...try not to: expect to know everything or be able to do it all...and most of all, don't worry about what others think!

Take your time with transfers and you will grow accustomed to your own procedure (mine is "easy" as I cannot transfer myself due to having broken both arms as well as the six vertebrae, and I am Hoyer lift dependent )...

Since I've only been home for about seven months after being in hospitals for six months, I'm still looking for tips!! But, truthfully (for a change, as I just usually keep up my positivity! ) it was a huge adjustment for me...I will not sugar-coat the experience...besides the obvious physical changes/challenges, coming home brought the emotional side to the forefront...in the hospitals, the surreal world and busy-ness kept my feelings aside...when I returned home, that is when I realized the reality(-ies) of this new Life...maybe you already have or not...but please be good to yourself with whatever you are experiencing...like "going out in public in a wheelchair" - just keep your chin up, a smile on your face, and look people directly in the eye...and as airart1 said, you'll be OK!

Edited by S&W Winger, 19 February 2010 - 12:04 AM.

[Slowlegs]

I know how you feel. I was "inside" for a year. At first I got outside just in my bed and the world had got real scary. I got a case of agoraphobia and when I went outside I saw this huge open sky (instead of just looking at the ceiling above my bed) and honestly thought I was going to fall upwards. Another thing I found difficult was speed. After moving at the average speed of an orderly pushing my bed or chair at what is probably three quarters average walking speed or being transported round the hospital grounds in an ambulance where top speed was about 10mph, that change to thirty and sixty miles an hour felt like a leap to light speed. Soon got used to that but then at home it made me realize that this new life was a lot different. I was on my own emotionally, physically and pretty much medically.

Suddenly things didn't just happen on autopilot. I had to plan, remember pills, clean catheters, make sure everything was not only working but work out what to do when they didn't. The first time I had to make an emergency colostomy bag out of a bin liner and bread bag because my supplies had run out was a shock, as was my first catheter blockage. After a while we all learn to figure everything out, especially when we have (or had) youth on our respective sides. Of course now, just like you probably are thinking too, all the above seem so trivial, it's getting through them the first time that are hard but soon you'll look back and laugh at how much you have grown.

Good luck iwith getting used to your new life. I can't say it will be easy or it will be really hard. Just remember that with this site most of your answers have been faced by someone else and are probably only an email away at worst.

Edited by Slowlegs, 19 February 2010 - 12:26 AM.

[nitrosport_5]

i do agree with the take things slow and dont fall. At first i used a transfer board to do any transfers. I slowly realized that i could get over small gaps without it and then i worked my way to not using one at all. it is scary at first but you just gotta try it. After you have been at it for a while, things will just fall into a routein and you wont need to think about doing anything, it will just come natural. just like others have said

[Ratticis]

The first time I was home post SCI was 13 months in. That was an experence. But, made it to the carshow I wanted and even got another trophy for my truck If possible, I would really suggest getting a day pass or even a few days before they kick you out for good so you know what to expect and what needs changed. I finally came home for good after another 18 months . . . well, not really for good, but was released for the first time.

It gets easier as time goes by. Incontinence is just incontinence, a fall is just a fall, but you can overcome it all . . . ok, you'll either find that statement funny or not get it . . .

Anyway, take things day by day and keep reaching for that next small goal. Best of luck!

[Karl187]

halobear11, on Feb 18 2010, 07:46 PM, said:

Hey! My name is Savannah, I'm 19 years old and in about a week I am returning home (Oshkosh) from a very long stay at Aurora St. Luke's Hospital in Milwaukee, WI.
This will be the first time I will be out and about in public with a wheelchair (my injury is around the T6 area). Since insurance is making this huge push forward for me to leave rehab, I'm quite nervous about the transition from the hospital to the "real world." My bowel program/incontinence still is a big issue, and simply not always having someone in front of me when I slide board transfer will be something to get used to. I was wondering if anyone had any tips for going back? Thanks in advance!

~Savannah

I didn't get out of hospital even overnight for five months+ because I lost my previous house. I went home for a few days trial toward the end of my rehab and I found home to be a daunting thought. But when I actually arrived, with the help of my family, I didn't want to return to hospital and I forced them to release me earlier than scheduled.

The hospital is a kind of sheltered place but its also terrible. Home is your domain and you can choose what to do and when to do it etc.

My bowel routine was still messed up until I left hospital. Once I got home I was able to stick to a rigid routine and eat much better and this helped no end.
Also, the transfer board thing you will get used to. In the hospital toward the end of my stay I was not using it, but my bed at home sinks low when my legs are over the edge and I use the board to even out the height difference when getting back into the chair. Point is, you will get used to everything at home in time. It'll be daunting, exciting and downright confusing at first, but you'll get used to it and you'll eventually wonder why you were so scared in the first place.

Good luck.

[Tetracyclone]

I had 2 transitions- the first to our apartment overseas with a full time caretaker. That cushioned the emotional aspect for me because my dear carer would do whatever i was too tired to do.

Then we transitioned home to our house in the States, where I was alone during the day. It took about 4 months before basic self care was no longer exhausting. Getting myself meals wore me out entirely. Now I'm home a year and I'm in charge of all dishes and even sweep the floors from the chair now and then. Feels easy, and I'm ever so much stronger. Continuing with my exercise program at home has been key.

[Soryfam]

Congratulations on being able to go home. I always hated the transfer board, and like others have said, you will probably not need for too long. I also have to agree to take things slow. It does feel good to be out of the hospital and back into your own space, but it can be tempting to get in the mindset that if you can do everything that you used to right away that the injury will just go away.
For me it was difficult to ask for help, but you have to some times.
Please be sure to to get into some good physical and occupational therapy. I especially liked the occupational therapy in my home. Each time he came we would work on strategies to do things I wanted to be able to do, like organizing the refrigerator, putting dishes where I can reach them, figuring out ways I could still garden, and even strategies on how I would get up if I fell while gardening. These not only helped me to physically be able to do these, butthey also gave me hope and something "fun" to do.
I've had to learn that my whole life isn't about being disabled. I happen to be disabled, but that's not who I am.
Lastly, if you can manage it, finding a good therapist to go to is a great help. THe therapist isn't part of your current life and doesn't try to compare you to pre SCI. Instead they help you deal with issues of loss, friendships, family relations, and just about anything else.

I wish you well. Keep in touch here-- it is a wonderful resource.

Sandy

[guido]

Hey Savannah - Happy going home! Guess you're getting the picture from what everyone's saying. It's a bit like starting at a new school. Everything is unfamiliar at first, and you have to start all over again with lots of things like bladder & bowels.

If you find anything hard, remember:
- you can ask here
- it will get easier
- there are others who know what you are going through and it's all completely normal for the situation.

Enjoy the home cooking and your own bed, and no old b4stard snoring on an air mattress nearby!!!

[Ratticis]

Actually, I had a 3 day pass for christmas, but didn't go back fer 2 weeks so they discharged me

[Soryfam]

Ratticis, on Feb 19 2010, 03:39 PM, said:

Actually, I had a 3 day pass for christmas, but didn't go back fer 2 weeks so they discharged me

I like this-- a runaway patient!!!!!!


Sandy

[McTavish]

Hi savannah congratulations on going home. When I came home I can honestly say that it took a good three years before everything in the house was just as I wanted, so patience is a good thing to have. Now there is not much that I can,t do on my own, if it can,t be done one way i will find another way to to whatever the job in hand is. As for transferring I use a wooden board only to get into the car otherwise I can transfer without a board again this will come to you in time. Luckily I do not have to do any bowel programme, for which I am eternally grateful.
At first I was embarassed about going out in the wheelchair and didn't want anyone to see me but that soon changed and now it does not bother me one iota. Good Luck and enjoy your homecoming.

[halobear11]

Thank you all so much for your support!
Today was quite rough; I woke up sick to my stomach, knowing my homecoming is just a day away. I talked to my doctor (who has just been simply amazing at answering questions), and my OT and PT and I feel much better...about everything.
Also my father has been an inspiration. He feels like I'm as ready as I'm going to be, but it just doesn't feel enough! Although, when I worry, I just worry about everything, and that just becomes overwhelming. So it's not just one simple thing, but simply coming home.

Thanks again for replying to this post. I really need(ed) the extra support!

~Savannah

[mellowgator]

halobear11, on Mar 2 2010, 02:51 AM, said:

Thank you all so much for your support!
Today was quite rough; I woke up sick to my stomach, knowing my homecoming is just a day away. I talked to my doctor (who has just been simply amazing at answering questions), and my OT and PT and I feel much better...about everything.
Also my father has been an inspiration. He feels like I'm as ready as I'm going to be, but it just doesn't feel enough! Although, when I worry, I just worry about everything, and that just becomes overwhelming. So it's not just one simple thing, but simply coming home.

Thanks again for replying to this post. I really need(ed) the extra support!

~Savannah

HI SAVANNA,

I GUESS YOU ARE HOME BY NOW. I KNOW THIS IS A SUPER HARD AJUSTMENT. I HAD NURSES WHO CAME IN TO HELP ME AT FIRST BUT OVER THE YEARS I NO LONGER NEED AN OUTSIDE ATTENDANT. I HAVE GONE ON THE HAVE CHILDREN AND I REALLY FULL HAPPY LIFE. THE 1ST 5 YEARS WERE THE WORST. I HAD FRIENDS WHO DROPPED ME AFTER I WAS INJURED AND IT REALLY HURT MY FEELINGS. OVERALL THE BOWEL AND BLADDER WILL FALL INTO PLACE. IT JUST BECOMES PART OF WHO YOU ARE AND THE TROUBLE SHOOTING WILL COME SECOND NATURE. I WAS 25 WHEN INJURED AND IT REALLY HURT MY SELF ESTEEM AND I DIDN'T FEEL SEXY. I FINALLY KNEW WHAT IT FELT LIKE TO BE ON THE OTHER SIDE AND IT REALLY OPENED MY EYES. GOOD LUCK IN YOUR NEW LIFE. GO BACK TO SCHOOL AND KEEP ACTIVE AND YOU'LL DO GREAT.

MELLOWGATOR

[C-5Quad1065]

halobear11, on Feb 18 2010, 01:46 PM, said:

Hey! My name is Savannah, I'm 19 years old and in about a week I am returning home (Oshkosh) from a very long stay at Aurora St. Luke's Hospital in Milwaukee, WI.
This will be the first time I will be out and about in public with a wheelchair (my injury is around the T6 area). Since insurance is making this huge push forward for me to leave rehab, I'm quite nervous about the transition from the hospital to the "real world." My bowel program/incontinence still is a big issue, and simply not always having someone in front of me when I slide board transfer will be something to get used to. I was wondering if anyone had any tips for going back? Thanks in advance!

~Savannah

Hey Savannah....

Congrats on the homecoming! I too am from WI(Green Bay) My inpatient was at Froedtert in Milwaukee and they have been WONDERFUL in helping my transitions. There is a learning curve, that's for sure. I'm trying to get my dad to stop touching me during my transfers. He still seems to think I am weak like flower, and not strong like bull. When I woke up from surgery I had NO arms whatsoever, through my therapy I've gained all my biceps and starting to get triceps. I've got one wrist so I now am learning to be left-handed. Insurance is goal-orientated so work as hard as possible in rehab. Try outpatient at Froedtert if at all possible, I can't say enough about them. They really work to get as much out of your insurance as possible. I tried outpatient therapy in Green Bay(Aurora) and they just didn't have what I needed, so now I drive two hours to Milwaukee once a week to go to outpatient. Once a week of good therapy is twice as good as twice a week bad therapy. Being a c-5/c-6 incomplete and so VERY close to being able to live alone is all credited to good therapy and hard work. You only get 1 chance at therapy so work as hard as you can and learn all you can. Us Wisconsisites have to stick together. I have only been a Quad for 6 months and I still go to Froedtert so if you end up there look me up I go on Wednesdays and my name is Jason. Good luck in your recovery, don't be scared to hit that wall that we know is out there, but climb that wall quickly and move on. The hurdles never end so hit them head-on and hit them hard. You can overcome all of them they're easy. You've already made it through the worst...remember that.

Jason