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No surgery for me

Good news at last. Lily has been booked into the vet and when they checked she has lost all her baby teeth and adult teeth are all coming in nicely...so one less procedure for her. The vet is also going to clip her toenails and do a closer grooming around her face while she’s asleep (groomer couldn’t do much around the face because she stressed out). I’m sure she’ll be ok but I still have a little PTSD as the last time I left a dog at the vet surgery she never came home. I know it’s silly but it is in the back of my mind.

I was referred for in home OT assessment for my new wheelchair. I was told not to ring them, they will ring me with an appt. well, after waiting almost two weeks and hearing nothing (website says..rapid response...), I broke the rule, and rang them. At first they said I didn’t have a referral then they said I needed an admin visit first...when I told them that the OT in hospital has done the initial assessment and paperwork...they managed to find my referral. Frustrating bureaucracy. So next Tuesday the OT is coming to see if my home is suitable for a wheelchair...jeez...used one on and off in the house for 6 years and constantly for the last 5 weeks, had the alterations already done etc. Just need a better wheelchair that raises to help reach high cupboards and tilts when my BP drops, easier transfer to bed etc. Talk about waste of time and money but the “system” is all important. I was told it could take up to 5 home visits. It’s one size fits all.

At least I’m finally getting somewhere after asking for a new wheelchair assessment for months. I’m also looking forward to my first private PT session this afternoon.

I cancelled my haircut and eye appt and rescheduled for later in the week. It would have been too much.

It’s very quiet here..no boisterous, mischievous, sweet little dog.
 
I miss having my little one following me around when he is at the groomer. Glad Lily doesn't need dental work.
Hope PT goes well...
Hope today is a Good Day, Gigi:SUNsmile:
 
Thanks mojo. Lily did well, in fact so well you wouldn’t know she had surgery except for the cute little bandages on her back feet. That in itself is a problem because she wants to run, jump, play etc. She flew up 13 steps to visit my Father this morning before we could stop her. I’ve had to crate her to make her have a rest.

My PT was a waste of time. She basically told me that I should rock my spasms out and that my feet are a big problem. I think after 6 years of hypertonicity, contracture sand spasms that I already knew all that. I think it’s my own fault. I was looking for every avenue of treatment instead of acceptance of reality. I will complete the course but I have no expectations. I did find out coincidentally when she read out my referral letter that my heart failure is confirmed. What a way to find out, I didn’t let on to her that I had not been informed of the results of my echo. One more thing to add to the list..
 
Hi, I was wondering how I can change the name of my thread. I want to change it to...No surgery for me.
 
Agh, bad hip day. To be more truthful, bad hip days. Every time I move my hip it really hurts, not just the groin but the thigh muscles and butt too. It seems to have worsened since I’ve stopped walking. I wouldn’t be surprised if my hip eventually just fuses into one position, at least that’s what feels is happening. It’s getting stiffer and stiffer and I can no longer straighten my hip flexors at all. Just having a moan. I’ll learn to live with it.
 
@Gidget so sorry you're having such a rough time.....your lack of self-pity never fails to impress me. Does heat, as in a hot water bottle, or heat pad or similar, help with either the pain or flexibility? I know there are exercises for the chairbound on youTube, but I'm sure you've already discovered them. Moan as much as you want....better to get it off your chest than to bottle it up. Hope Lily is back to normal....tho it sounds as if her surgery didn't slow her down at all :dogwalk:.......perhaps you need to take her batteries out :heehee:
 
Hi Gidget. Glad Lily is on the mend.
I also found some comfort in heating pad but I, like Anny, am guessing you've tried just about everything there is for relief.
Hope you don't fault is for continuing to want to throw out suggestions. We hate to see you discouraged or in pain.
Acceptance is a hard thing.
Hugs for you and praying you have a Good Day.:praying:
 
I've forwarded your request for thread name change...someone will handle it for you.
 
Thread title all changed for you! Hang in there @Gidget ! And moan all you want - we do understand!
 
Thanks for the name change. Every time I looked at the last thread title it reminded me of the hope I had for surgery.

As for the moan...well, I came home from hospital last night after my usual week of treatment. Now that I’m home I’m feeling better mentally and it’s easier to cope with chronic pain when your head is in a better space.

I have the cutest hot pack you’ve ever seen and it gets a lot of use. I find it comforting while it’s on but it has no lasting effect. I won’t take pain killers on a regular basis. A lot of them have interactions with my illness or they can create tolerance and dependency and I don’t want to go that route. I have packs of Temgesic and Tramadol. They remain unopened.

On an upbeat note..I’ve just been told I’ve been accepted for the National Disability Insurance Scheme which starts here on July 1st. I will be allocated a funding budget which I can access for my needs. I can have my bathroom modified, get the new power chair, have someone come in and clean my house weekly, have my ironing done, have my transport to social outings (plays etc) paid for, have ramps installed to help me access the garden and a whole lot more. I hope it’s going to be as good as it sounds. It has to be better than the current situation where I’m getting nothing besides the base pension.

I’m lying flat in bed with a rolled up towel under my bum and the hot pack on trying to stretch my hip flexors. I think this is the most effective static way I’ve found to help so far. I suppose time will tell if they loosen up long term.

My little dog was very naughty last night. I took her out every hour to pee then at 10.45pm, she squats and pees on the mat in my bedroom. I had a pee pad about a metre away. I was cranky!! Off she went, pee pad, crate and water bowl into the bathroom for the night and she whinged and howled and scratched at the door until 3.32am. I let her out at 5.15 and to my surprise she hadn’t peed at all. Bathroom lovely and clean. The blessing is...she’s exhausted today and just being a gentle quiet cuddly puppy. I wish she was this quiet all the time.
 
Oh I'm so glad you've got the funding Gidget......my daughter had a lot of that done and it made it so much easier for her to be independent.....make sure they do your housing mods so that it works for YOU, and not for them. Be prepared to be bolshie if necessary, it's worth it to get everything right the first time round. Do you have someone who will advocate for you if necessary? Push for everything you can, you deserve it.

Naughty Lily.....that is so irritating late at night when all you want to do is sleep! Do you think she's been a bit unsettled by your latest stay in hospital, and maybe she's picking up a bit on your stress? My daughter's dog always seems to forget some of his training when she's feeling ill or upset. Good job we love them, isn't it? :yes:
 
Yes anny, I’m hoping I can make some things easier to do. It’d be nice to clean my teeth and rinse my mouth without being side on to the vanity and doing everything left handed. Just to have a vanity with wheelchair acces under and the right height! I’d be in heaven. But..what I’d really love and don’t think I’ll be entitled to, is to have my bedroom window replaced with a door so I can get to the backyard. Then with my tilt and lift wheelchair I’d be able to hang my own washing on the clothes line. Independence...

I think the problem with Lily is the inconsistency between the discipline she gets from the three of us who share her care. I want her to be a calm, gentle, loving girl but my Aunt loves the feisty, energetic side and Dad just wants her to toilet outside and not use peepads. I’d like her to be completely outside toilet dog too but I find it too hard to let her out numerous times a night when I have to keep two cats escaping every time I open the door. (strict cat curfews here). As you would know, it’s not easy negotiating two cats and a puppy in a wheelchair. I’ve shut her out of the house for two hours to encourage her to run around and tire herself out for tonight but instead of that she’s trying to break down the closed cat flap trying to get back in....I’m going to win!
 
Gidget....re your bedroom window.....my daughter's bedroom is at the back of her unit, she has a front door and a side door from the utility room....you have to go thro the kitchen area to access it. They didn't want to give her a door from bedroom but we argued it from the safety angle....if there was a fire she would have to go thro the front door (onto a raised deck with steps and lift, so might be stranded) or the side door (thro the kitchen area, most likely source of fire, 3 steps down and the wheelchair wouldn't get thro anyway). After a lot of arguing they put a patio door where the window was and a wooden ramp down to the garden. Could you use that argument in any way? And are there any organisations who would advocate for you? I know you're a determined and feisty lady but fighting red tape over a length of time can be exhausting, as I'm sure you know, and you need to save your energy for some good stuff too.

I've just done a quick google, have you come across ADA Australia? Also you could try Citizens' Advice Bureau, there might be something more local to you. I'm sorry if I'm teaching grandmother to suck eggs (SUCH a weird saying!) but I can be a bit bossy.....won't be offended if you tell me to back off :wink:
 
Hope you and Lily have a good day today.
Hopefully they can get some accessibility improvements going soon for you.:SUNsmile:
 
I’ve just read your whole thread. What a journey you’ve been on! I certainly admire your strength to stay so positive through it all despite the many obstacles you’ve encountered. Lily is just adorable and I’m sure brings you great joy. My only other thought on her is that you may want to consider putting her in her kennel at night if she continues to have “accidents” inside. Unless she is a puppy, or unless she has some medical issues, she should be able to go all night without going outside. Hopefully the new accessibility changes will make life better and easier for you. You are an inspiration to all of us! Sending happy healing thoughts your way...:flwrysmile:
 
Thank you for being here. I need to have a moan sometimes. It’s a better hip day today. I don’t know why but some days the hip is better than others. If I knew the secret to the good days I’d be very grateful.

Lily was naughty last night...kept hopping on the bed...so she was placed in time out in the bathroom. Let’s just say it was a howling, barking, crying, noisy night and this morning Lily is VERY tired, plus I showered her and you’d think I was killing her AND she had a visit to the Vet to have her stitches taken out of her back legs (she screamed like she was having her legs cut off...embarrassing) I know that I’ll have a good night tonight because she can hardly move from exhaustion. A nice big meal of salmon, sweet potato and cauliflower (her favourites) and she’ll be out for the count.

@GrannyC Lily is just on 6 months and is mostly house trained, it’s only if she’s excited, angry at me (for being away in hospital) or it’s raining and she doesn’t want to get her feet wet, that she still pees in the house. I’ve also noticed that she is naughtier when my Aunt has been looking after her. She seems to be hyperexcitable whereas my father and I try to work on the calm, gentle, quiet side of her. My Aunt is away for 10 days so Lily won’t be getting the high sugar treats that my aunt gives to her and I’m going to work on some extra discipline and training while I can.

I’m so pleased with myself. I’ve managed to cook porterhouse steak, cauliflower cheese and make a side salad. It’s my first attempt at cooking from my wheelchair. The hardest part was cleaning the stove top and splash back afterward. My father was happy to accept his meal because he doesn’t bother cooking much for himself any more...just frozen meals and prepackaged salads for him usually. Silly little thing to feel pleased about but it’s a big deal for me. I’m slowly learning how to do things sitting down and having to reach long distances without almost falling out of the chair.
 
Gidget said:
A nice big meal of salmon, sweet potato and cauliflower (her favourites) and she’ll be out for the count.
Click to expand...

I'm jealous Gidget.....when Lily gets fed up with the high life, can I come and be your pampered pooch? Glad to hear you're coping so well in your chair.....once you get the kitchen mods done everything will be a lot easier :yes:
 
:hi: hope you are finding some peace with your new normal.
I think of you often but as people do...don't pop in as often when they feel badly that there is nothing they can do to help such a hard situation.
I hope Lily is behaving and that you are both OK.:roseshwr:
 
Hi, I’m back. I come to BS multiple times a day and read everyone’s posts but I don’t have a lot of news about my situation so there’s nothing to write about.

I’m currently in hospital for my usual treatment...boring!

I have to say I’m a little confused with my Doctors. Don’t get me wrong, I’m lucky I have Doctors who want to do the best for me but I do find the whole situation perplexing.

My Neuro just gave me 33 injections of Botox in my scalp, neck and shoulders..to lessen the artery spasms that cause temporary vision loss every couple of days. It hasn’t helped yet but you never know. However, now he wants me to get another brain and full spine MRI...I had one last June...I hate them. It’s such a big MRI that I’m in there for about an hour and a quarter/half. I have to be on oxygen and be sedated with Midazolam to stop the dystonia/spasms. On top of that the Oncologist wants me to have a gastroscopy and colonoscopy in two weeks time and I have to be admitted for 4 days for that (will need blood transfusion and covering antibiotics) and now my Physcian says my blood tests aren’t responding as well as he’d hoped to the increase in my dose of IV therapy for my bone marrow failure so the dose is going to be increased again (second increase in two months). Like I said, it’s good that they are proactive but it seems a bit silly to do all that and still be told I’m too unwell for hip surgery. Surely quality of life is important too.

Since I’ve stopped walking my legs have stiffened up and I sometimes have trouble getting them to move after they’ve been at rest. For instance I’m getting more episodes of dystonia where my legs want to extend and my feet and ankles invert and contract to the point of feeling as if my ankles are going to dislocate. When this happens I take a stat dose of Valium and try to bend my legs up to my chest to stretch out the spasms. When the Valium kicks in I can straighten my legs again. However I’m having problems with my right leg which now seems to lock in this contracted position. When I try to straighten it, not only is it very difficult but also very painful in the hip and thigh. I don’t know if it’s my hip at fault or my neuro disease.

[Bonesmart.org] No surgery for me


This is how my leg gets stuck. My left leg relaxes with no problems. I don’t know if it’s even worth mentioning to my Doctors and even which Doctor would be appropriate. Toss up...bad hip or neuro disease?

As for my disability funding. It’s all been approved but I haven’t been told what the budget is. I’ve had another home visit from the OT and I’m approved for a subsidy for my new wheelchair. I got to make the decision about features, seating, arm rests etc. and although I could have gone with the newest, you beaut, state of the art, electronic, digital model..I opted for an older version. I’m getting a Quickie Pulse 6 because the lift feature is cheaper to fit, it has a proven track record and the rear casters are closer to the centre which means I can reverse closer to walls and cupboards etc. I still have a co pay but I’m grateful for any help I can get. The ridiculous part...now that everything has been set in motion, it’s going to take the Government between 4 to 6 months to supply the chair. Why, oh why, is everything Government related so s..l..o..w. I’m sure if I owed Taxes they wouldn’t let me take that long to pay them.

Lily is doing well and I’ve booked her in for her next haircut (there’s a two week wait at the Grooming Parlor) and I’ve bought a couple of little jumpers and a pair of PJs for her for the coming winter. I’ve tried them on her...she hates them but she looks so cute.

This is the look I got when I mentioned the b..a..t..h word last week.


[Bonesmart.org] No surgery for me


She certainly lets me know how she feels. She did get 3 new toys after her bath so I think she forgave me.

I might do the newspaper sudoku now. Bye.
 
Hi @Gidget ......good to hear from you, was wondering how you were doing. That Lily of yours is sooo cute......I'm feeling a need for a little girl dog to keep my 2 boys in line! And pjs? :loveshwr: photo please!

Sorry to hear about all your medical stuff....you really are going thro the mill, it's a wonder you have any time left to do anything else! As for the hip/neuro thing.....can you just ask every dr you see and see if one of them has an idea? You seem to have narrowed it down to hip or nerve problem, but could there be another reason? I'm sure you don't need anyone telling you to ask, ask, ask.....you must be sick of doing it! Do you have someone close who could do some of the questioning for you? When my daughter got a bit overwhelmed I was able to talk to her drs and simplify the info a bit so she was less stressed. And yes, wading thro red tape to get modifications, equipment etc is very slow and frustrating.....can't imagine it's much better whatever part of the world you live in :umm:oh to win the Lottery! Good for you choosing a chair that suits you....the all-singing all-dancing versions look amazing but I know of someone who has one and more features mean more to go wrong. I am a big believer in KISS (keep it simple), as far as makes sense. Hope you get some good news from all these tests, let us know how you're getting on :console2:
 
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