No surgery for me

[Gidget]

I spoke to my Physician about steroid injections and whether they are contraindicated. He said he recommended I have the spine injections and physio and ditch the collar. So...

All over..red rover.
Didn’t hurt and the only side effect is a numb right hand...it now matches my left hand (permanent nerve damage) but I was warned it could happen and is only temporary. I also realised I’d been getting achey neck pain but only realised this after it disappeared with the local anaesthetic..the things you learn to live with and ignore!

The radiologist let me watch the procedure on the CT screen and explained everything as he did it. I asked if he thought it had been worth doing and he said that not only was the disc bulge compressing the nerves but that I had osteophytes compressing them too and the exit hole was tiny. So the injections are not a long term solution. I have to say, I was surprised he injected from the sides instead of the back. You learn new things all the time.

BTW, I didn’t have the central line for the procedure...it’s already there because I’m having my routine treatment. I rewarded myself with a slice of mango coconut cheesecake.

 

[Gidget]

I just realised I haven’t posted in almost two months.

A couple of news items.

I’ve been diagnosed with Sarcoidosis on top of everything else. I had a biopsy on what the GP and I thought was a skin cancer and it came back as Sarcoid. I’m in the process of staging. So far found in skin and spleen but more tests to come. It’s not a big deal but the treatment is steroids and I hate steroids. I’ll wait and see which organs are effected before I make a decision on whether I’ll agree to Prednisone or not.

Other news, I had that which can not be named...a.....f.a.l.l.....I’ve broken my left foot and ankle. I didn’t go to the doctor for 3 days after the accident and was very surprised when I had an X-ray that showed not one fracture but two. I’m not in a cast but in a moon boot which means I can still shower. I feel very lucky. I’m told I’ll probably be in the boot for 6-8 weeks. I’m also supposed to have CT because the X-ray report says there’s a suspicion of a Lifranc? Injury. I’m not going to bother about that CT at this stage and I’ll just give my leg a chance to heal first. The f.a.l.l happened when I got a sharp pain in my right hip and my leg gave way. I didn’t get any sympathy, just nagging. This is because I was walking with my walker when I’ve been given instructions that I’m not to walk at all.

I wouldn’t have a broken leg if I’d had my hip fixed....that’s my opinion and I’m sticking to it.

 

[anny]

Good grief @Gidget....I'm glad to hear you're ok but don't you think you're a little greedy....2 things at the same time? Don't know much about sarcoidosis so had to jump to Wiki for a quick read......apparently it's very common in Scandinavia, so are you a secret Viking? And it has associations with arthritis....do they think it's implicated with yours? Can understand you going slow on the prednisone....you must be sick to the back teeth with meds.....hope you can figure out some better way with the drs. Also hope that broken ankle isn't too painful.....have they given you the moon boot instead of a cast on the assumption you won't be weight-bearing? Lol, you'd better be compliant for a while Gidget My daughter was thought to have a Lisfranc fracture, fortunately she didn't.....I believe if it's a 'minor' one it can heal up with non WB....so fingers crossed that if you do have it, it will heal at the same time as the rest of it while you are resting. Keep posting and let us know how you're doing, take care

 

[Mojo333]

Hey there friend!
Oh my stars...you are just wrought with some really horrible luck.
Honestly, you distress me.
My better half is having MOH surgery to deal with what we thought was a mole/skin tag issue less than a half inch from his eye tomorrow...that is a carcinoma...so I'm right with you with the stress.
And I'm with you on the hip thing...certainly not medical professional but if anyone could stand this surgery...it is you.
I'm glad you posted..I've been wondering about you.
Keep the faith...sorry about the Frankenstein boot.

 

[anny]

Hi @mojo.....sorry to read about your husband....seems to be a bad year for husbands all round the world with medical issues. Hope things get better for him, and take care of yourself too.....you are so supportive and encouraging for everyone else, don't forget to give yourself a pat on the back too! You have cheerleaders too Everything crossed for tomorrow

 

[Gidget]

Yeah I’ll take all the sympathy I can get because there’s none forthcoming at my house. It’s either nagging about how stupid I am or laughing at me in the boot.

I think I underestimated the damage because I can’t feel my legs very well. So even though I knew something was wrong it wasn’t particularly painful. Sometimes pain is your friend. The ankle fracture was because I tore the ligament off the bone and it pulled a bit of bone off too. The ankle/foot thing is just a bit of a nuisance but my hip is letting me know it’s there. It’s much worse than my fractures.

Anny....my Doc told me to go home and Google Sarcoidosis, so I did. Guess what? My Dad is Swedish. (Well so am I actually even though I was born in Oz...because I’m dual nationality). I also read that it’s common to get an Rh negative arthritis and soft tissue joint swelling and tendinitis...I didn’t ask the Doc about it because I’ve a lot more tests to have done including a PET scan. If the joints light up we’ll know there’s an issue. I’m REALLY hoping I don’t have to have a lung biopsy...that scares me silly. The Neuro has already mentioned a brain biopsy in the past so I suppose I’m going to be fending one of those off too.

It’s interesting that your daughter was thought to have the Lisfranc injury. It’s not something you hear about much. I was told that it almost always requires surgery or you end up with a foot deformity. When my Doc said that I just looked at him and pointed to my “good” foot that is inverted, clawed and contracted and said...geez, that’d be awful! You have to laugh.

Anny, I hope you don’t mind I have some questions about how your daughters disability funding works. I’ve been given funding for daily Activities to help by employing a cleaner, gardener, cook or whatever. Plenty of funds there. I’ll have a hard time spending it all. Also funding for home mods for bathroom alteration, widening doorways installing new ramps, hopefully new back door etc..just need OT assessment, builders quotes and the Gov will pay for it. The bit I don’t understand is I’ve been given $17400.00 to Participate in the Community. Things like going to concerts, theme parks...whatever I want. BUT...I have to pay my own tickets to these events and I can only use this money to pay someone to accompany me (to maximum $42/hr) I’ve just applied for a companion card which means whoever is with me at these events gets free admission. Now just yesterday I received a phone call telling me they’ve reviewed my funding plan and are going to give me funding to pay for transport in taxis or whatever as well. It seems very extravagant. Do you think this is normal? Or does it seem a bit excessive? I mean this is the budget for just one year. I get repeat funding every year. Apparently I can even ask for preprepared meals to be delivered and paid for, my dog to be bathed and groomed because I can’t do it, to pay someone to accompany me if I want to go to Uni to study etc. I’m a bit overwhelmed with the world that’s being offered to me and I’m feeling guilty that I’m receiving so much when we have homeless Veterans etc. Is it the same in NZ? This scheme only came to my area in July but it’s being rolled out across the country slowly and started about 6 years ago. I read where they are funding children under 7 years old with learning difficulties, autism, intellectual problems, social anxiety etc to have whatever therapies they need including speech therapy, OT, physio, exercise physiologists, psychologists etc etc. I think that is an excellent proactive way to help them achieve their full potential but I can’t see where it’s all going to be sustainable in the long run.

It seems as if this Disability Scheme is at least more permanent than our revolving door Prime Ministers.

 

[Mojo333]

I’m a bit overwhelmed with the world that’s being offered to me and I’m feeling guilty that I’m receiving so much

Sorry to butt in ...but in my opinion
You let them figure out the future and logistics of the social services...you do all you want...I certainly wouldn't begrudge you if my tax dollars were funding it.
You deserve it!

 

[Gidget]

Thanks Mojo. I do feel guilty. I know that if the funds are there I need to use them or they’ll just be wasted but it is so against my nature to spend my own money let alone OPM.

I hope your husbands surgery goes well. I live in the skin cancer capital of the world and here we see it as a normal part of life. That’s why I wasn’t at all concerned when I had my biopsies. I was surprised when I didn’t have skin cancer and it was Sarcoidosis. So was my GP.

It’s a nasty looking day here. Gloomy, windy, cold (only 18C at the moment) that’s not cold for most places but I think it’s cold. My little dog doesn’t want to get out of her basket and both cats are curled up in their little caves. If I wasn’t getting a visitor I’d have a pyjama day.

 

[Mojo333]

I don't think she should feel guilty at all.
You are the epitome of one who would use such improvements to truly have a better quality of life and inspire others with your refusal to just give up on being happy despite the adversities!

Thankfully DH prognosis basil cell not melanoma but ridiculously close to his eye.
They cut quite a large plug out and thankfully pathology showed all clear now...we then had a hour and half drive to get to plastic surgeon so he could close up that hole. Lots of in and out stitches!
He looks like a socked him a good one...
Now I get to drive him around!

Hope today is a good day dear Gidget!

 

[anny]

Thankfully DH prognosis basil cell not melanoma

 

[Gidget]

That’s great Mojo. Hopefully he’ll heal very well.

 

[anny]

Hi Gidget......do NOT feel at all guilty for being given help! This sounds quite different from NZ....here we have ACC (accident compensation corporation) for people who have any sort of accident.....it pays for treatment etc equipment/modifications, and if you were working at the time of the accident you get approx 80% salary until you return. The snag is that they will often claim it wasn't an accident, there was an underlying previous condition etc and you have to be very knowledgeable and supported to fight this. Fortunately we contacted one of the top lawyers who take on ACC cases and we won The other thing wrong with this system is that someone who has say, a car crash, and is paralysed, will get ACC ie house mods, special equipment, disability van etc etc. Someone who is paralysed in exactly the same way but thro illness will not get this....they are on the public system, and receive the minimum ie they might get a wheelchair and a ramp, but not the van and new bathroom/kitchen....and I think they would only get a disability benefit, nothing employment related. So unfair....it should be a level playing field. However, not accepting help where you are offered it will not make any difference to anyone else. You turning it down is not going to enable them to extend the scheme to others. So take advantage of it all Gidget ......outings and taxi rides and home delivered meals will never compensate for the restrictions in your mobility , but they can make life easier and more pleasant for you, so go for it. If you feel really guilty about it, maybe you can donate a little money to an appropriate charity when you receive a govt benefit you would otherwise have to pay for. But I don't think you should feel any obligation to do so....I only suggest it if it's the only way you can come to terms with your 'good fortune'.

Although I strongly disagree with the NZ system of ACC, which is very divisive (I believe it started years ago as an attempt to keep accidents out of court....you don't sue for damages here, as ACC foots the bill, even for tourists) I am enormously grateful for the amount of help my daughter has received.....by modifying her little unit and giving her a wheelchair van she has been able to keep her independence and live on her own (well.....with 1 dog and 2 cats too!) and I can feel fairly confident that if I'm not around she will still be able to cope. My heart aches for those people who do not qualify because it was illness not accident, or who do not have the ability and support to push for the help they are entitled to.

I am thrilled to know that you have so many opportunities opening up for you.....let us know what you do with it (not sure Lily will approve of the opportunity for more frequent grooming opportunities tho )

It seems as if this Disability Scheme is at least more permanent than our revolving door Prime Ministers.

lol given that I'm now at least part Kiwi I'd better not comment on PMs in Oz

 

[Gidget]

Oh I see the difference. It’s a fair bit different then. Here if you have an accident which leaves you disabled and you receive compensation, that compensation is taken into account when you apply for the NDIS. A lot of people get less funding through NDIS until they’ve exhausted their compensation payouts. The inequitable part of our system is that you only qualify for NDIS if you become disabled under the age of 65 (and can prove its permanent) and have made an application before then. So if you’re still working (retirement age for anyone born after 1952 is 65.5 then increases, born after 1954 the retirement age is 66 and it goes up each year to maximum retirement age 67) you can’t access NDIS ever. So young enough to work but too old for the disability insurance scheme...very wrong! It should be that if you haven’t reached retirement age you are eligible to apply for the NDIS. It reminds me when we had Conscription of our young people during the Viet Nam war. We sent 18 year olds to fight and die but they were too young to vote or drink alcohol...absolutely wrong. So instead of increasing the Conscription age, they lowered the age for voting and drinking...logical...not! I’d better not start on that farce that was the Viet Nam war. The only good thing about that war was the influx of Vietnamese refugees into our country. They have expanded (along with all migrants and refugees), our culture, our philosophies, our food and generally made our country a better place.

I was very impressed when I woke this morning to find we still have the same Prime Minister.

 

[anny]

I was very impressed when I woke this morning to find we still have the same Prime Minister.

be thankful for small mercies

 

[Gidget]

Wow, it keeps coming. I had a phone call yesterday from the NDIS. They reviewed my funding plan for my disability. As soon as he said that I thought uh oh...they gave me too much and they’re reducing it. No. They forgot to give me funding for consumables, assistive Technology and transport...so they are increasing my funding. So now I can get cup holders for my wheelchair, storage bag or whatever else as well as things like electric can openers to help my hands, tipping kettles etc.

This is becoming so overwhelming that I’m getting so much help. I imagined I would struggle financially in the future because of the extra costs caused by disability but that fear is gone.

My Doc yesterday said that my cuboid bone in my ankle is at risk of dying with this fracture so I’ll be in this boot a long time. He’s also getting the OT to organise night splints for both legs/feet. I’ve been wanting those for a long time so there’s a silver lining to these fractures.

I don’t know what’s happened to Spring. It’s awful here. 8.30 am and dark, overcast, gloomy, cold, drizzly...not at all the kind of weather you associate with Queensland. I’m almost glad I’m in hospital so I have an excuse to stay in bed. Missing my little dog though.

 

[anny]

I'm so glad you're getting all this financial support.....being able to afford things is such a big worry for anyone unable to work and having that worry taken away will, hopefully, make it a bit less stressful and easier to concentrate on yourself instead of $$.

You are a very positive lady to see the 'benefit' of breaking your ankle! Hope it all gets sorted quickly for you

Agree about the weather.....considering it's now spring and there are loads of older lambs around it is NOT very warm.....more like winter at the moment ....in fact, the farthest range of hills I can see from home have snow on the tops.

 

[Mojo333]

Good things Can happen to good people. Karma!
Hope you get to go home soon...
Wishing you a good weekend...

 

[Gidget]

Well I need/would like some advice.

I had the CT of my foot. Then I received a phone call asking me to attend my GP for the results. My regular GP has resigned so I was assigned to another in the same practice.

When I went I was told the CT showed a # of the neck of the 5th metatarsal, # of the base of the 5th metatarsal, # cuboid and # calcaneus (displaced). The new GP used Dr Google (yes, while I was sitting there) to find out where the fractures were and if they needed treatment. Can I just say...that did not fill me with confidence. She has referred me to a fracture clinic at the local hospital because she read on Google that the cuboid fracture may need surgery and external fixations. She said she “didn’t like the sound of that”! Well, guess what? Neither do I!

My foot/ankle doesn’t hurt much at all, just occasional sharp shooting nerve pains on the top of my foot and a bit achey under the instep. My opposite hip on the other hand...very unpleasant. I’m continuing with the moon boot but do walk on my broken foot at night without the boot when I need to go to the toilet or let the dog out for a wee. I feel I’ve lost a lot of confidence walking with my walker and I’m quite scared to move much now. I know I’m supposed to use the wheelchair in any case but it’s so hard to resist the urge to keep what mobility I do have.

I’ll be very surprised if I ever hear from the fracture clinic because it’s a public hospital and there are months to years wait list for appts. In the meantime I haven’t been given any advice on what I should be doing with my ankle besides...keep wearing the boot! I have questions (which I did ask but were not answered) like, is it ok to walk on the foot occasionally without the boot? How long should I wear it for 6 weeks? 8 weeks? (It’s been 2 weeks already) Do I need a further X-ray or CT?

My Physician in hospital asked the OT to supply night splints for both my feet but after assessment, decided that I wasn’t a candidate due to foot drop and contractures and that I need Botox and serial casting from a Hypertonicity Clinic. The OT told me to get my GP to refer me to this clinic and I did ask the GP but she said she had never heard of it and didn’t want to refer me in case she was doing the wrong thing and to ask my Neurologist when I see him in a few months time??? I had given this GP the paperwork for the Hypertonicity Clinic that the OT gave me with all the referral details etc. By this time I realised I was in the presence of an idiot and I most definitely will not be seeing her again so now I’m GPless on top of everything else.

I just feel down right now. Useless left leg, useless right hip and useless GP. Any words of wisdom or advice very welcome.

 

[Mojo333]

Any words of wisdom or advice very welcome.

I'm hoping someone comes along with either, as I have none...but just the utmost frustration that I'm sure is infantesimile in comparison to your own.
Don't know if Jo would have a professional opinion of if it or if it out of her wheelhouse?
Guess a virtual hug is useless at this point?
Sending you one despite its value.

 

[Barbaraj]

Good grief, @Gidget, that doctor really does sound clueless--very discouraging, I'm sure. I have no words of advice as this whole situation is so clearly out of my expertise, but wanted to express my sympathy for all you've been going through. This must be so very, very hard. In your shoes I suspect I'd be looking for a new GP as soon as possible, and hoping that the new doctor isn't an idiot like the person you've seen recently. Unfortunately, I think you need to keep being an advocate for yourself, as much as you're able--firmly, quietly and persistent--or if you have family or friends who are willing to help you in the role of an advisor/advocate, then definitely ask for their assistance. I am sending positive, strong wishes your way--deep breath, hoping tomorrow is a better day.