What I called "mobility issues"

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miapeters

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  1. Incontinent
Hey, it's Mia

I have already talked about this with some people but I think I'm okay with sharing this, a recent post wanted to know why I take a long time to change and the thought came across that it's okay to share this with everyone.
I usually don't like the feeling of talking about this as a public post, but here it goes.

what happened was when I was small I got a bacterial infection and it got really bad and long story short I went into sepsis. Both my legs were amputated above the knee..... The doctors did all they could to keep me alive so at least I came through that episode. That's also how I became incontinent because of a lot of tissue damage in that area. I mean I don't remember much myself but it was a mess down there and I went through multiple surgeries to minimize some of the damage.
Going for further surgery is quite a risk for me since my last surgery to have a artificial sphinctor to control my bowels failed and went sideways.... It's part of the reason why I haven't been able to get a colostomy yet. Not sure if I ever can..... Anyway I just wanted to share this with everyone.

I'm okay with any question but really I prefer everyone to be cool about it..... Physically I'm okay now and other than the incontinence and the mobility issues I'm okay physically.
 
No one on here will judge you (I know I will not). We are all damaged in some way, shape or form (physically and/or emotionally). Do you think a colostomy will be easier to deal with? I know a family member who had one and it was hard on him.
 
Wow, that sounds like quite an ordeal. Sepsis can be deadly. I think I would have an even harder time adjusting to the lack of legs than dealing with incontinence. Do you use prosthetics to walk? Did the infection affect anything else like your reproductive system too?
 
Spaz said:
No one on here will judge you (I know I will not). We are all damaged in some way, shape or form (physically and/or emotionally). Do you think a colostomy will be easier to deal with? I know a family member who had one and it was hard on him.
Thanks.
Cleaning up and changing is quite tedious for me at the moment. When I'm home it's pretty straight forward because everything is adapted to make it easy for me. But when I'm outside it takes a really long time as I've mentioned before.... Handicap toilets are a lot easier but nothing compared to home...I feel like a colostomy would make it easier for me but of coarse there's both pro's and cons to it. The doctor isn't as optimistic about a colostomy surgery as I am. It's risky especially for me so I'm not even sure whether it'll ever happen.
 
INTrePid said:
Wow, that sounds like quite an ordeal. Sepsis can be deadly. I think I would have an even harder time adjusting to the lack of legs than dealing with incontinence. Do you use prosthetics to walk? Did the infection affect anything else like your reproductive system too?

Yeah.... Anyway I had tons of support from family.....I wouldn't have made it this far without them and it made everything a lot better than it was.

I've met quite a few people who have gotten sepsis in different circumstances, it can be really bad. I personally know someone just a few years older than me who lost all 4 limbs. She can do a lot more than you'd think by herself. Modern prosthetics are improving. Unfortunately as far as I know I'm the only one where it affected my plumbing....... Honestly I don't want to get into my reproductive system if that's okay.

I do use prosthetics, they are not as limited as someone would think. My stumps aren't the same length which made walking on prosthetic's a little hard to learn but I've had plenty of physiotherapy to be able to go without crutches. There are some limitations like the prosthetic's knee only bends while walking. Not while I'm walking up stairs or anything, it's like walking up the stairs without bending your knee or anything. so somethings are a little hard to tackle like stairs, standing up and sitting back down. Totally doable and most of the time I manage by myself.
What I have been using all this time a mechanical prosthetics which are 'affordable'. The titanium knee itself is pretty expensive.
I hope to get a c-leg prosthetic one day, it's not going to drastically change anything because of how short my stumps are but it will be much easier to walk on.

Actually the incontinence feels way worse, maybe that's just me but it's like something which is unsanitary and just in general grosses me out despite me having it as long as I did. I guess it's just perspective. As I became older out felt like a worse thing. By the time I was in high school I thought it's probably the worst thing out of everything what happened.
 
miapeters said:
Thanks. Cleaning up and changing is quite tedious for me at the moment. When I'm home it's pretty straight forward because everything is adapted to make it easy for me. But when I'm outside it takes a really long time as I've mentioned before.... Handicap toilets are a lot easier but nothing compared to home...I feel like a colostomy would make it easier for me but of coarse there's both pro's and cons to it. The doctor isn't as optimistic about a colostomy surgery as I am. It's risky especially for me so I'm not even sure whether it'll ever happen.

This thread explains a lot of your struggles. Thanks for sharing. I think anyone who is incontinent will agree that home is way better than public bathrooms. I can deal with my mess and my family's mess at home. I admit I am somewhat OCD when it comes to cleanliness, but I have a hard time dealing with other peoples mess. Yuck.

I am fortunate because I can usually control my IBS-D through diet. I am sorry you have to deal with constant bowel IC. I don't blame you for wanting a colostomy, but surgery is kinda scary any way you look at it.
 
Hi and thanks for sharing. We've talked so I know your history just as you know my wife's. Life has a way of throwing some really big obstacles our way. You're young, so you'd have that colostomy bag for a lot of years, so I think I'd listen to you doctor. If he's worried about a future infection site, that will have to be something to consider.

My wife and I met with some specialists about a kidney transplant for her, but they didn't think she was a good candidate. In fact, they weren't even sure she would survive the surgery so we had to accept the difficult news. Sometimes we have to live with things we hate and we have to find ways that enable it to happen. It's never easy.
 
miapeters said:
Hey, it's Mia

I have already talked about this with some people but I think I'm okay with sharing this, a recent post wanted to know why I take a long time to change and the thought came across that it's okay to share this with everyone.
I usually don't like the feeling of talking about this as a public post, but here it goes.

what happened was when I was small I got a bacterial infection and it got really bad and long story short I went into sepsis. Both my legs were amputated above the knee..... The doctors did all they could to keep me alive so at least I came through that episode. That's also how I became incontinent because of a lot of tissue damage in that area. I mean I don't remember much myself but it was a mess down there and I went through multiple surgeries to minimize some of the damage.
Going for further surgery is quite a risk for me since my last surgery to have a artificial sphinctor to control my bowels failed and went sideways.... It's part of the reason why I haven't been able to get a colostomy yet. Not sure if I ever can..... Anyway I just wanted to share this with everyone.

I'm okay with any question but really I prefer everyone to be cool about it..... Physically I'm okay now and other than the incontinence and the mobility issues I'm okay physically.

It is not an issue with me, since I myself have Cerebral Palsy and Autism and in diapers 24/7.
 
Wow, holy crap! Yeah, thanks for sharing and that does explain a lot. You've been through so much, you're a trooper for even being able to work through it all.
 
Wow, Mia. It took guts to share with the forum. I'm proud of you and I hope it feels right.

Of course we've been talking a lot privately so I already knew this stuff, but I have to think your interactions here will be easier and more meaningful now that everyone can understand where you are truly coming from. And call me Pollyanna but I also believe that someone with your clear strength will get through your current difficulties and have a remarkable life.

Pollyanna (I mean Kerry)
 
Hi Mia, we've messaged privately and I was aware of your physical deficits. I'm still quite amazed at how you continue to move forward. How you manage getting around on a collage campus alone gets you my admiration. But dealing with IC along with everything else makes you a fighter that has somehow come out on top. As hard as it is for a lot of us, it can always be worse. I was just in Florida a week ago. It wasn't a pleasure trip. I helped get a close relative into hospice care. They gave her 6 weeks to 6 months to live. By the time I got home just over a week ago she had slipped into a coma and died the next day. She lasted 48 hours. She was only 51 when ovarian cancer took her. So when we take inventory of our health conditions, we should be thankful that the will to fight for an acceptable way to live is always there. Sometimes it's hard to find our happy place, to be content with current circumstance and keep a positive outlook. You girl, are proof that it's possible.
 
Mia I hope your active in your local cripp community , many people think a disability means give up, go quietly in the night , become s living ghost , that's not living that's not life , we have to achieve our hopes and dreams , that which we hold dear , we have a local program of rescuing fellow cripps from nursing homes and assisted living showing them how to access indepent living , doing ADL's and leading a more fulfilling life , people like you are the role models for the people who just give up, life ain't perfect ,life ain't easy ,but it's up to us to aspire for more and reach for it and most people achieve more then they ever dreamed ,when you graduate from boot camp in the Marine corp they say you were "reborn hard" , you have fought domething harder than anything our tiny little minds can dream up, you were forged in fire from an early age and have more heart in one cell than many people have in there whole body , facing adversity that almost eclipses the human condition and coming away the person you are is a thing of beauty and should give you a great source of pride ,every day of your life says strength, many parents question the value of heroic interventions for there children "What kind of life will they have" your there poster child ,any life you want to make ,you will, it's between the child and there god to negotiate what they want to aspire to and achieve , keep going keep growing .adapt and over come , dont adapt and call it done. Life is what we make it , and you help make it beautifull.

Sent from my SM-T810 using Tapatalk
 
Thank you everybody for the support...... Sorry I'm a little slow in response as there's a lot of stuff to work out and plan before I start uni, I might not have as much free time as I like [emoji14]

I'm feeling much better now and despite having loads of things to sort out I feeling less stressed.....
I keep active when I can and as some of you may know have been doing a great deal of swimming since last year, it's been the most active part of my life ever and I'm so glad I'm doing it! I'm not the most social in real life as I'd like to be but enough to have a pretty outdoorsy attitude. I hate being inside so although getting around can be quite an ordeal I love that I can do it. I'm honored you see me as inspirational or whatever but I'm inspired by so many other people. I've met people who have lost limbs and I'm some cases all 4 limbs and what they can do motivates me inspires me and my Independence keeps me from wanting to just give up. I really value being able to do things on my own, I've been looked after/cared for by other people many times before and while not for long it really gives you an idea of what it means to be able to do stuff by yourself.
As cliche as it may sound if you really really want something you have to take it, it's not going to come to you.

That being said I can't take all the credit... My mother pushed me to do things by myself and while I sort of resented doing that as I got older I realized how important it was. If you looked from the outside most would probably have thought she's going too hard on me, but that's exactly what I needed.

Anyway thanks guys..... I guess I'm glad I had the guts to share this......
 
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I myself am pretty active in my local disability community. I drive with hand controls and am pretty independent.
I have too much going on to ever feel sorry for myself in any way as an Autistic with Cerebral Palsy.

 
Hi All,
this is the first time i have read this read and can only congratulate Mia on the way she has managed her life. A lot of you say you prefer changing at home because the disabled toilets are far from ideal. I don't know if there is a US version of this site or organisation, but here in the UK we are lucky enough to have:- http://www.changing-places.org/ These toilets are a dream to use either alone if it's a hydraulic table or with assistance if it's a hoist system, (although you could probably manage the hoist system yourself provided you have the manual dexterity). There is space for a wheelchair user and 2 carers or assistants, some have screens to help preserve modesty, decent washing facilities and of course bins for wet or soiled nappies.

On a slightly different note, Tetra why do you use the word "Cripps" it seems to me it's a rather pejorative word to use for disabled people it reminds me of the 1960's and some of the names that my cousin was called (he had poliomyelitis)
 
PCBaby said:
Hi All,
this is the first time i have read this read and can only congratulate Mia on the way she has managed her life. A lot of you say you prefer changing at home because the disabled toilets are far from ideal. I don't know if there is a US version of this site or organisation, but here in the UK we are lucky enough to have:- http://www.changing-places.org/ These toilets are a dream to use either alone if it's a hydraulic table or with assistance if it's a hoist system, (although you could probably manage the hoist system yourself provided you have the manual dexterity). There is space for a wheelchair user and 2 carers or assistants, some have screens to help preserve modesty, decent washing facilities and of course bins for wet or soiled nappies.

On a slightly different note, Tetra why do you use the word "Cripps" it seems to me it's a rather pejorative word to use for disabled people it reminds me of the 1960's and some of the names that my cousin was called (he had poliomyelitis)
Thanks a lot, and actually while at home The toilet I use is completely adapted to make it easier for me to change by myself I can still manage it in a normal bathroom but it takes hell of a long time and sometimes it can be very slow and frustrating, because I'm an above knee amputee the prosthetic's are a little limited... But anyway I can manage, I feel like whatever there is I want to be able to do it myself, handicap bathroom or not I want to be able.
 
PCBaby said:
Hi All,
this is the first time i have read this read and can only congratulate Mia on the way she has managed her life. A lot of you say you prefer changing at home because the disabled toilets are far from ideal. I don't know if there is a US version of this site or organisation, but here in the UK we are lucky enough to have:- http://www.changing-places.org/ These toilets are a dream to use either alone if it's a hydraulic table or with assistance if it's a hoist system, (although you could probably manage the hoist system yourself provided you have the manual dexterity). There is space for a wheelchair user and 2 carers or assistants, some have screens to help preserve modesty, decent washing facilities and of course bins for wet or soiled nappies.

On a slightly different note, Tetra why do you use the word "Cripps" it seems to me it's a rather pejorative word to use for disabled people it reminds me of the 1960's and some of the names that my cousin was called (he had poliomyelitis)
It's just a bad habit , from sitting around talking amongst the many flavors of disability, i used to volunteer on a a governor's roundtable on disabilities and when we were discussing things in sessions rather than spelling out what we obviously were talking about "cripps" just became a slang for saying for the umpteenth million time what a particular person's disability or impairment was , I think we turned to "cripps" rather than the wholly more offensive use of cripples that people would refer to us as ,and most us dont consider ourselves as meeting the publics "definition of crippled"or all the inherent bias assosciated with the word .

on that note i once got taken to task by a neurologist for using "cripps" he said in two Hours i had reffered to my gang involvement 4 times why was a so proud of it ? And how did i get involved in the gang ? He did not know that they accepted people in wheelchairs , yet so many of his patients were proud of it ? I had to explain to him it was our internal slang that came without all the negative connotations associated with labels society gave us ,and that none of us were in fact gang members , i couldnt imagine how a guy so smart could be so dumb,and how he could think that clients were gang identifying in the middle of an otherwise clear coherent discussion .

So that is why I use it , it fills the void left when we don't want to use diagnostic or regular civilian references that come with so much "baggage" of all the unspoken bias people have .

Sent from my SM-T810 using Tapatalk
 
Hi Tetra,
thanks for the explanation

- - - Updated - - -

Hi Mia,
thanks for the reply, i can completely understand your wanting to be independent. A couple of my Consultants have suggested i should consider having carers in to help, but i see that as a slippery slope downwards and whilst i don't have your problems i too want to remain as independent as possible for as long as possible.
 
PCBaby said:
Hi Tetra,
thanks for the explanation

- - - Updated - - -

Hi Mia,
thanks for the reply, i can completely understand your wanting to be independent. A couple of my Consultants have suggested i should consider having carers in to help, but i see that as a slippery slope downwards and whilst i don't have your problems i too want to remain as independent as possible for as long as possible.
Pc having someone come in to help you , doesnt have to decrease your independence , especially if you can have "consumer model" rather than agency model.

When you are able to hire and fire as well as train and define the carers duties , you can remain completely independent well still having someone available if you need the help .

Sent from my SM-T810 using Tapatalk
 
Hi Tetra thanks for the info, these would unfortunately be agency carers with no guarantee that i would get the same 1 or 2 every day.
 
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