No surgery for me

Aww, @Gidget this all feels so unfair. I'm sorry for all you are dealing with. It's a lot.
I'll bet that cutie pie, Lily keeps you smiling. That expression is priceless.
It's great you'll be getting a new wheel chair, hopefully it only takes four months as opposed to six.
Wishing you the best on any upcoming tests. :prayer:

Thanks for updating. It was nice to hear from you. Stay in touch.
A great weekend to you!
 
4-6 months is ludicrous...and yes...the government is very slow and inefficient.
That's why I like that our local charities can help because they are private they can get things done so much quicker and easier.
I hate that you will have to go through the MRI, but do hope it means the doctors haven't given up on finding some help for your situation.
Lilly's expression is priceless.
Little Mojo on the other hand will jump in my bathtub and bark for a bath if I've mentioned it and I'm putting it off.
Sorry you are struggling so..:console2:
 
@anny, @Layla, @Mojo333

Thanks for your replies. I’m not upset about the tests or Docs inputs but more confused than anything else. I mention some small symptom and they jump all over it and I wish I hadn’t said anything but they think the hip pain is of minor consequence...I’ll never understand them. It is what it is.

I was very naughty this morning. I’m horribly embarrassed.

I’m still in hospital and I wanted a shower before I was hooked up for my 12 hour infusion. So I get everything ready and have a lovely, long, hot shower. The bathroom exhaust fan is rather ineffective and it gets really steamy, so when I go to brush my teeth, brush my hair etc..I open the bathroom door to help clear the steamy mirror. Well, it set off the smoke detector. I of course, didn’t realise this had happened. I just heard the siren over the PA system with the announcement that the fire alarm system has been activated and to stand by for further instructions. Then the announcement said it was activated for the 4th floor (where my ward is), so I hurriedly finished in the bathroom and packed in case we needed to be evacuated. I saw and heard the fire engines arriving at the hospital and within minutes my room was full of firemen. Yep, it was my smoke detector...I wished the floor would have swallowed me up. It was awful. Luckily everyone had a good laugh about it (including the security guards) and as it’s Sunday here...they had to call in a janitor to deactivate and replace the detector. At least the sprinkler system didn’t go off. Lesson learnt...no hot showers for me any more or at least, don’t open the bathroom door until the steam has disappated.

My Doc has given permission for me to order wine with my meals and I plan on having a glass or two tonight...it’s been a big day. There have been quite a few amused nurses popping in to have a laugh. ‍
 
Well at least you are keeping everyone on their toes @Gidget ! Enjoy your day!
 
well you won't be stuck for a topic of conversation for a while will you :heehee: sounds like you brought a smile for quite a few people. Enjoy your glass or three (oops, two :wink:) of wine, it's been like an eventful day! :cheers:
 
:rotfl: into every life, some excitement must come.:wink:
Oh my stars...:cheers2:cheers!
 
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What some people will resort to in an effort to have hunky fireman show up in their room :rotfl:
Nice shower, all fresh and clean, primping in the foggy mirror. Ok, looking good...come rescue me :heehee:
Then a nightcap....Next we'll hear it was followed by a cigarette, lol!

Oh Gidget, that story was great. Thanks for the laughs! Hope you have a good week.
@Gidget
 
@Gidget - I find myself with the same issue on my left (bad) side - I can't sit with my feet on the floor for very long and when I try to stand, my left leg won't extend. I have to work it up and down a couple of times in order to straighten it out. Similarly, if I sleep like you show, I've woken up with that leg stuck and painful - again, slowly work it back and forth until it releases. it seems to be a combination of the OA in that hip plus I wore a heel lift on my right leg for 12 years (courtesy of a lousy physio recommendation long time ago now) - and when I finally found a good physio, they were rather surprised at the amount of "damage" to my left side muscles, tendons, etc. Everything was tight, wrong, shortened, you name it. I've spent the past 15 months cleaning that up to the point that I've mostly fixed the muscular issues and left with the bone pain now. But that leg extension issue continues no matter how much I exercise - it has lessened but still there. Not sure if its related to your issues but the symptoms are very similar. Strengthening the glute and hip muscles were key to helping with it for me.
 
Oh. @wayner1...you have no idea how much your post has reassured me. I thought I was the only one with this issue. I’ve been a little concerned that I would end up stuck in that contracted position. I’ve tried all kind of stretches to try and keep that leg supple but the more I do, the tighter it gets. That’s the nature of my illness though. I’ve been told not to stimulate the muscles too much because it causes an uncontrollable increase in tone and spasming and I don’t want to take preventative medicine for it.

Last time I had PT, the stretching and rocking I was doing on my left leg caused my right leg and left arm to spasm and become completely rigid, so now I can’t even have PT. I’ve been considering alternative treatments such as acupuncture, hypnosis and formal meditation classes (currently do meditation with the help of an app).

If all else fails I’m considering asking my Neurologist to Botox the muscles around my hip and my anterior thigh. I don’t know if it’s even feasible but it won’t hurt to ask.

I know I’m in hospital too often when you get to know the good nurses from the bad. Today I have a not so good one. Every admission she’s been the same...doesn’t seem to want to work. I’m supposed to have regular observations (BP, pulse, oxygen levels, temp) when I’m having my infusion because it has the potential to cause heart and lung issues. Well, it’s been 4 hours since she started her shift and I haven’t even seen her since the infusion started and I haven’t had a BP taken in 16 hours (every patient is supposed to have obs done every 4 hours, day and night). I know my bed won’t be made because she has never made my bed in any of my admissions. I know my central line site won’t be checked because she’s never done it, even though it’s supposed to be done every shift. Worst of all, she’s doing a 12 hour shift so I’m stuck with her all day. I also asked if she could organise my transport for discharge tomorrow morning (has to be done before 10am the day before discharge). I can guarantee she won’t do it and I’ll be stuck here tomorrow until I call a wheelchair taxi and end up paying $120 just to get home. The quality of the nursing staff makes such a difference to my hospital stays. The good ones are Angels, the bad ones are nightmares. (and no, I’m not a demanding patient. I never press the call button or ask for attention..in fact the nurses always say I’m extremely easy to look after). Maybe the squeaky wheel gets the oil. On the other hand, I’ve never met a bad cleaner or meal service person...always polite and friendly...makes such a difference.

@anny...I’ll try taking a photo of Lily in her PJs after her haircut on Wednesday. She’s a bit wriggly and it’s not always easy.

Wonders will never cease...just had my obs taken...not by my nurse..by another nurse..BP down to 84 systolic, pulse 43, temp 34C .... so...lying flat, on oxygen with bed tilted head down and space blanket and warm blankets on me. Very dramatic but I feel fine. Goodness knows how long my obs have been bad.

Docs come in...gotta go.
 
Gidget...I'm late to your party. I've just read through your entire thread. I have no good words of encouragement; what I do have is profound admiration for your coping ability. Without ever giving in and actually accepting your ever-diminishing world, you still manage to reflect with pragmatism and even humor as you observe what has happened to you.

I used to teach writing skills, and I always stressed the importance of letting your writing reflect your voice, in order to reach the reader. You, my dear lady, have a strong writing voice, and you have reached this reader. I suspect you reach all your readers.

I am left wanting some kind of happy outcome for you. A happier outcome. A manageable outcome. I have no idea what it will be or what shape it will take. But from everything I hear in your voice, if there's a way to get it, you will find it. And I will be glued to this page waiting to read about it.

Sharon
 
@sharonslp ...nice to hear from you. Thank you For your kind words. I quite often think I’m becoming less articulate (and more disinhibited) and it was lovely to be told that I can express myself with my writing. My courage, resolve, strength etc, vary from hour to hour. I try to tell myself that the times when I’m down and vulnerable will pass and the good times will prevail again. I’m lucky I have an inbuilt optimism. I do get a little jealous that some people have a faith in God. Now that must be comforting but it’s not something you can force yourself to have no matter how much you crave that comfort.

My Doc just left. It turns out the low BP, pulse, temp etc is related to my central and peripheral neuropathy and it’s a malfunction of the Autonomic Nervous System and is not treatable or curable (weird...I’ve been on Fludrocortisone for it before). It’s the reason that I’m unable to have elective surgery. While it’s not good news, it’s good that someone has finally told me why I don’t have the “neuro or global reserve” that I keep reading about in my medical reports.

For some unknown reason my 12 hour nurse has been allocated to another section of the ward (aww) and my new nurse is delightful. There’s also a very new student nurse doing her first prac from Uni. Her name is Britney and she’s 10 years old (to my old eyes). It’s touching how scared and wide eyed they are when they enter the room. They look like frightened rabbits. I’m so pleased I’m too old to feel that fear of doing the wrong thing. Age has its benefits.

It’s no good...I’ve been craving a coffee frappe with cream all day..I’m going to ring the downstairs coffee shop and have one delivered...I’m conceding defeat to my vice.

Discharge tomorrow....bliss.
 
Hi @Gidget
Hope you have an easy breezy discharge and safe travels home.
Wishing you a good week!
 
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@Gidget I too, have started following you. I read through all the pages and find your writing to be inspiring and surprisingly upbeat considering all you have to deal with. I have no idea how you deal with it all so well. I need to have your attitude toward blocks in my life path. :) Please continue to update us. I am sorry that you have so much to have to deal with and wish there was a way to help you. Hoping for good things to come your way soon! :flwrysmile::flwrysmile::flwrysmile:
 
I'm probably not supposed to post on here first am I? But wanted to say hi to Gidget, I have just been reading through your thread and have to take my hat of to you for your determination, it's sad that you weren't able to have treatment that might have increased your mobility but like you said life throws us curved balls and we are meant to catch them even if it means one smacking us in the eye
Considering the setbacks you have encountered your still sounding a glass half full type of lady.
I think you will do well no matter what they tell you, so you can't walk, but a person is not measured by how many steps they can achieve in my mind, but how far they can learn to adapt.
Keep on living your life to the best of your ability and it will always be worth it.
PS love your beautiful little dog she is so sweet.
I have 3 rogues.
 
5CC4EF90-D54B-48A1-A44C-2A52E47533E1.jpeg
Lily in her PJs. Big day at the groomers.
 
ahh Gidget she's such a sweetie.....bet you can't stay cross with her for too long, no matter what she's done! Thank you for posting that photo......a lovely picture to go to sleep on :roseshwr:
 
Lily is adorable, Gidget...and I'll bet lots of fun too.
Hope you have a nice weekend! :)
@Gidget
 
Yes, Gidget.
Hope you have a peaceful weekend.:friends:
 
Hi @Gidget ....hope you and Lily are doing ok and that you are at home having a great weekend :flwrysmile:
 

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