No surgery for me

[Mojo333]

Of course you aren't decrepit...and I love your spirit...it exudes through the limitations of internet communication.
That being said, I don't want you to undergo a major surgery that would put your life in danger.
AND I want you to be mobile and OUT of pain.
Prayers for you that something gives.
Not very helpful, but know I'm rooting for you, Gidget.

 

[Gidget]

I just got a message that the OS is coming to rehab to see me this afternoon. That’s great, it means I don’t have to try to get to his office tomorrow.

I’ve just come from the gym...gave 100% effort and I’m exhausted. Time for a morning nap.

BTW...the support on here is keeping my spirits up...I can’t thank you enough for just being there.

 

[MammaT]

Good luck.

 

[anny]

Hi Gidget, lots of luck and best wishes from over the Ditch, how frustrating for you to be told that! Hope your OS is much more positive.....if he isn't do you have the option of shopping for another OS?

I read your post about the dryer on the wall in the rehab unit....have to say that doesn't surprise me at all. My daughter's been in a wheelchair for 4 years, and I am constantly muttering under my breath (ok, in a pretty loud voice!) about the difficulties she has with things being out of her reach even in hospital, and in shops, cafes etc that proudly say they are 'accessible'. I'm ashamed to say it never even crossed my mind to notice it before one of my family was affected

Hope it goes well tomorrow

 

[Gidget]

Thanks anny. I love NZ. remember the days when we didn’t need Passports between our two countries? Maybe you’re too young. As for the wheelchair thing...it’s those really high counters at the cafes that you can’t reach up to...annoying. Also shops where the aisles are so narrow that you can’t even get in. Frustrating.

Unfortunately the OS has just left. No surgery for me. He said it was too risky medically and functionally I’d receive very little benefit because my mobility problems would prevent a good recovery and I might even be worse off. My right foot is stuck in an inverted extended position and would prevent the hip from working normally. He did say that I need intensive physio on my feet and perhaps splinting. It’s been mentioned before but no one has done anything about it. Suggested treatment....wheelchair alternating with bed rest and pain killers.

I refuse to be defeated. I’ll find a good life in my wheelchair. I’m going on a cruise to New Caledonia in June...I WILL thoroughly enjoy every moment and I WILL use my wheelchair to it’s full capacity. Sex on the beach cocktails....here I come.

Will not....

 

[MammaT]

Oh @Gidget, I know that isn’t the news you wanted to hear. I have the feeling that the wheelchair will be used to it’s full capacity. You have a spirit that is determined to live your life to its fullest. Hope the physio and splinting provides some relief.

 

[Gidget]

I’ve been lying here all night wondering why I’m even in rehab for “reconditioning” if the advice I’m being given is to stop trying to walk and use my wheelchair all the time and when I’m told I’m not well enough to have surgery to fix any problems I might get...

I was alternating between thinking that there must be some hope for improvement to justify this rehab admission and resignation that I just have to accept what the Docs tell me.

Well this morning I got my answer. The rehab Doc said not to worry about being admitted for reconditioning in 6 months...there’s no point. So it looks like they are giving up on any chance of “fixing” me.

Well, they can say what they want but I won’t give up on me! I’ll do it myself. Two years ago I was sent home from hospital to die...I was placed under palliative care and was given a do not resuscitate order. Against all odds and with sheer grit I’m still here and I intend to not only stay here but improve. If there was an emoji for sticking out a tongue and thumbing my nose at them that’s what I’d insert here.

Now...off to gym and shoulders back, head up and chin out.

 

[anny]

wow I admire your grit @Gidget .....you are one spunky lady! Don't give up, keep fighting, you're far too young to sink into the life of an invalid! I hope you stay with the forum and let us know how you're getting on.....and I hope that one day we will hear that they have found a way to give you that new hip

 

[Mojo333]

(best I can do)

Trust thyself.
I pray solutions will come for you.

 

[Gidget]

The whole dept..PT, OT, Doc etc had their patient case meeting this morning. I’ve been offered, meal delivery, house cleaning, nursing assistance for daily hygiene etc etc. I don’t need any of it but the one thing I would like is someone to do my ironing...no, not on offer ‍

I am getting a home OT visit with a number of new wheelchairs to see which one best suits my needs. My current wheelchair is 6 yo and getting a bit wonky. They say I should get some financial assistance up to about $6,600.00. That’s great, I had to pay for my last wheelchair by myself and it wasn’t cheap.

I had a bit of a fall night before last and twisted my ankle but didn’t tell anyone about it until they noticed the swelling and bruising. I’m lucky?? that I can’t feel my legs much and it’s not painful. Now I’m getting ice packs for it and I’ve used them on my hip as well and I couldn’t believe how good it is. So it’s true...ice, ice, ice! I think ice is going to be my new friend...and I thought it was only good for post surgery.

I love this forum and the supportive people here. Thank you.

 

[Layla]

You look great! @Gidget
Your strength and determination is inspiring.
Prayers things start looking up. Wishing you comfort and peace!

 

[MammaT]

Happy to hear they are providing you support @Gidget. Take the assistance you can get. Hopefully that will let you focus on other things.

 

[Jaycey]

So it’s true...ice, ice, ice! I think ice is going to be my new friend...and I thought it was only good for post surgery.

Ice is a natural pain killer. For some it doesn't help pre-op. But looks like you are one of the lucky ones! Well done!

I really admire your determination @Gidget ! We are here for you!

 

[Gidget]

I spoke with my rehab Doc this morning. I told her that when I was admitted I’d hoped to be told that my nerve/brain damage was repairing, that we’d work on strengthening my legs, that we’d aim for walking with a cane and I’d have my hip fixed to improve mobility. I told her I’d had my hope taken away. She said that she wouldn’t have been as blunt with most people but she knew that I was very resilient and I wouldn’t like false promises.

It’s true...I’ll survive and get over it. I’m disappointed now but I’ll be okay.

Oh, and there’s no point in physio or splinting on my feet...it’s permanent and non fixable...ho hum.

 

[Mojo333]

So how are you, Gidget?
I don't know how you must be feeling except that there are things that no-one knows for sure and that you have a purpose.
I hope that you find something beautiful in today.

 

[Gidget]

Thanks for asking mojo. I’m home. I’ve found lots of accessibility problems. Not being able to reach the top cupboards in the kitchen, the coffee pod machine, the top shelves of the fridge. In my bedroom there wasn’t enough room between the end of the bed and my chest of drawers for the wheelchair which meant I couldn’t get my clothes out of the walk in robe OR the drawers, I couldn’t open or close the window or window blinds...the list seemed to get bigger every time I tried to do anything.

So I got the toolbox out, got the allan key and removed the bed frame. Now I’ve just got the electric bed but plenty of room to get around. It was extremely difficult to do while sitting in a wheelchair and I’d just got to the end when someone came for a visit and told me that they’d do it...really...I’d told them I had a problem two days ago and there was no offer of help then.

Unfortunately I was trying to move my bedside table so my wheelchair could fit in when I had an accident. The wheelchair control got stuck in full forward and my left foot and leg got trapped between the wheelchair and bedside table and I’m not sure but I think I might have broken my ankle. It’s hard to know because I can’t feel my legs the same as other people. Let’s just say it’s bruised, swollen, has a funny throbbing sensation and I can’t weight bear to stand transfer to my wheelchair. I also can’t flex or move my ankle at all. The bruising goes half way up my calf to the toes and over the bottom end of the fibula. I’m just grateful I can’t feel pain very much .

I’m getting lots of cuddles from my little scuff ball and she’s learning quickly to stay away from the wheelchair. However, she does love going for rides. Bad news is it’s been raining heavily here and scruff ball keeps getting muddy and then trying to get on my lap...yuk! I’ve used a lot of baby wipes and hand towels since I’ve been home.

I’m lying in bed at the moment with my legs elevated and ice pack on my left foot watching the crime and investigation channel...geez, there are some nasty evil people around. I quite often don’t lock my doors at night but I might now. Note to self...don’t watch murder stories again.

 

[anny]

@Gidget I'm worried about your ankle....have you had it seen by a dr? If you haven't could you please call your ambulance service and at least let their first responder check it out? I realise you can't just whizz yourself down to A&E but please at least get them to come to you. If you have very little feeling in your leg you could also have damaged your circulation/soft tissues etc and that could be nasty, so please don't be stalwart but get it checked!

Your story of trying to fit your wheelchair into an 'ordinary' house sounded very familiar.....when my daughter came home in a wheelchair it was really frustrating.....ended up downsizing a lot of furniture just so that she could get round it, and a lot of reorganisation. But she DID get there in the end, and is now quite settled, as you will get there too. Ask for help if you need it, don't wait for people to offer.....I think most people who have not come into contact with someone with a disability do not quite understand what they can and can't do, and also are afraid of upsetting them by questioning their independence. I hope you have lots of cuddles with your lovely little scruffball.....she really is a poppet! and a peaceful evening, BUT please get that ankle checked out asap

 

[Beckadeez]

I hate to hear of all of your problems. Im amazed at your positivity though. Awesome! Please get your ankle examined. I cringed just reading about it. Hugs...

 

[Gidget]

Thanks. I decided if I still can’t move my foot or ankle tomorrow that I’ll either see my GP or go to the ED. The icing has kept the bruising and swelling in check.

 

[Mojo333]

Oh my stars....
I hate that you crunched your foot.
Please do let someone look at it. My sister has very little feeling in her get due to neuropathy from diabetes and cancer treatment aftermath. She injured her foot and ended up with gangrene in it before she knew it.
I don't know what the "new normal" for you will be, but I saw how sweet your picture was with those beautiful clouds in the background and how determined you are to live your life.
Oh your pup is such a doll baby. My Mojo was a little fluff ball and now he is still adorable, but now he is becoming just a cranky old dude. He drags through every manner of Yuk also and then wants to lay on me!
Hope not a bad injury, Gidget.