Where to start?

annic4363

HI All

And firstly my apologies for the prolonged disappearance!

To say the life has been challenging would be putting it mildly.. so briefly....

1. I have pain in my right foot since November last year. About that time I was diagnosed with raised cholesterol and diabetes having been told that I had osteoporosis in September. Gotta luv those steroids! The pain in my foot has been interesting though! It has been tendinitis, Mortons Neuroma, RA of course and finally I had an MRI in March - when they found 2 fractured bones!!! So off I toddle to a consultant who put me in an Aircast as I was not able to have surgery (See point 2!) Well if you don't know this thing it looks like it was designed by Darth Vader.. it is bloomin' uncomfortable, awkward and positively lethal in the wet... So back I go the consultant after 6 weeks in this thing and for the second time he doesn't have my notes... so starts on about surgery again as if we had never met before! Now I am no doctor but even I know RA and diabetes make foot surgery challenging. I suggested he get my notes and was treated to 'don't tell me what to do. I'm the doctor!'

Well I am sorry this led to a TOTAL MELTDOWN! I was too exhausted and depressed for this. Have you ever tried to flounce out in an Aircast - particularly when it is only half on?! Anyway I had to go back and see him after an XRay and hey presto my notes had magically appeared.. "Oh you have Osteoporosis Oh you have DiabetesOh you have 'Rheumatism' (WHAT THE BLAZES IS THAT?!) Oh well this makes you a poor candidate for surgery' Well I just wanted to scream at him - THATS WHY YOU NEEDED MY NOTES!

Anyway the upshot was my GP referred me to a different consultant for a second opinion. The new one seems to think Phyiso will do the trick. So that will be the magic hands physio that heals broken bones then will it? Interestingly he didn't even mention the fracture...

So for now I have given up... I will live with it till I can't and then we will see.. I am certainly not wearing the aircast in icy conditions as I don't want to a broken wrist to my trauma...

2. My husband has been in a Taylors Spatial Frame (http://en.wikipedia.org/wiki/Taylor_Spatial_Frame) since April. This is the second time we have been through this so we knew what to expect - or thought we did! Having said that this time has been much tougher. What with pain leading to sleep deprivation leading to pain leading to total exhaustion (Coupled with RA of course) ... well need I say more! WE have just heard he needs a further 4 weeks in the frame before going into a cast for 6 weeks.... Poor love...

3. NOW my mother (for whom I am the only relative nearby) has done something bizarre to her hip or lower back. She is in agony poor thing and has become old overnight. So now I am cooking her a meal once a day and doing just about everything else for her. She has been on an assortment of pain killers none of which seem to be doing much good. My real worry is that after all this time it is no better - in fact I think it could even be worse.. so now we wait for Blood tests and Xrays and hope against hope that it is just her back...

So I hope I am forgiven .. oh and for whinging too of course! I know we all cope with a lot but sometimes I do feel like I could head off to Kirsty Young's desert island.. but only on the proviso that NO-ONE comes looking for me...

Chat soon

Annie xxx

woodbon

Hi, I'm sorry, you have been through quite an ordeal and to have to look after your mother as well must be very hard.

I don't have the same problems as you, although I have experience of consultants not being sure of the diagnosis and after 2 years, they are still not sure. Arthritis is a hard thing to sort out, but I hope you have pain killers. Did they give you anything for the RA? Anyway I hope the physio can do something or refer you back to someone else who can help you. They can make a difference really, I've had some good physio on my lower spine & hip.
Let us know how you get on. Someone else here may be able to give you better advice, if they have had similar problems.
Love Sue

annic4363

Thank you!

I am an old hand at RA and seem to have tried most things. Currently I am on Enbrel as an anti TNF, Lefludomide, Predisolone and an assortment of pain killers. In the past I have tried Humira and all the varieties of Methotrexate!

I didn't even dare start on the RA meds but I changed to Enbrel in January but it has had no effect on my RA at all. My ESR is still too high and I will be interested to hear what happens with the Rheumy nurse next week... mind you I am not sure I want to hear....

It is lovely to know there are others out there going through this as it can be a bit isolating sometimes..,

Thanks again for the support

Annie

woodbon wrote:

Hi, I'm sorry, you have been through quite an ordeal and to have to look after your mother as well must be very hard.

I don't have the same problems as you, although I have experience of consultants not being sure of the diagnosis and after 2 years, they are still not sure. Arthritis is a hard thing to sort out, but I hope you have pain killers. Did they give you anything for the RA? Anyway I hope the physio can do something or refer you back to someone else who can help you. They can make a difference really, I've had some good physio on my lower spine & hip.
Let us know how you get on. Someone else here may be able to give you better advice, if they have had similar problems.
Love Sue

elnafinn

Dear Annie

My heart goes out to you. You have been thru the mill and back haven't you, no wonder you have not had time for the forum. Never apologise for being away from here or not posting very often. The forum is for everyone to use as little or as often as they choose.

Could you not get in some help in for your mum for a few weeks? Carers for instance. It seems unfair that you should be doing so much with all that is going on with you and your husband. I know you probably want to do it, but you cannot overburden yourself at this time.

You call in as often as you wish to, especially now, it does help to write things down and you will get support from us even if we have no magic answers.

I do hope that your mum begins to start to feel better and you can then take more of a back seat from looking after her. These sort of things often happen altogether, don't they?

Look after yourself, as well as your husband and mum and do please pop in as and when you are able to do so. You can guarantee a warm welcome from us.

Luv
Elna x

ps I started this reply but had to stop as my little grand daughter came over, otherwise it would have been sooner.

dorcas

Hi Annie

nice to meet you

Having read all you've been going through I'm not surprised you'd want to go to a desert island :roll: how you've coped with what life and arther has been throwing at you over these months/ years shows how amazingly resilient you must be.

I don't have answers...but hope that your meeting with physio and the rheummy nurse will result in something positive by way of treatment.

but perhaps more importantly I did wonder if there is anyone who recognises that you and your husband and mother need support :?:
and that someone...the physio or nurse ..is/ will be looking at local services to support you with the practicalities of helping you mother as well as your husband given your own health difficulties.

I do hope things get better for all of you very soon.

we are here on the forum to listen and support you too...as are our very helpful helpline peeps...so please know that you are not alone.

gentle (((hugs)))

Iris x

roses1

Hi Annie,

I am so sorry life is being so cruel ! Just sending you some (((((hugs)))))

Nice to meet you btw


Rose x

annic4363

..... and now I have fallen out of bed....

:oops: :oops: :oops:

Annie

PS Thank you all!

elnafinn

Oh no, Annie! What happened? I hope you have not done any more damage to yourself. You are most definitely going through a very bad patch at the moment. Surely nothing else can happen, can it?
How are you now?

Luv
Elna x

annic4363

I have no idea! And NO I hadn't resorted to the Chardonney!

I just woke up as I hit my head on the night stand heading for the floor..

I am a bit battered and bruised now... Hey ho

But the good news is I got Ma an Xray appointment for tomorrow so that feels like progress...

Now I just need to get some work done!

Annie x

elnafinn

Hi Annie,

You will have to wrap yourself up in cotton wool. Have you got the Arnica ready for your bruises? I do hope there will not be any.

Good news on mum's xray tomorrow. Progess indeed!

You go careful, with your chores, my lovely!

I do hope today gets better for you,

Luv
Elna x (who must now shower and get into day clothes to greet the world properly :roll: :oops:

dreamdaisy

I have no practical suggestions whatoseover, but my heart goes out to you. Your plate is crammed to overflowing - perhaps finding some care for your mother could be a start but how resistant would she be to that? You also have to make sure that you get the time you need for rest etc otherwise your health is going to break down completely and then everyone will be up a certain creek minus the propelling mechanism. I wish I could help more but I don't have a clue: my sincere apologies. DD

annic4363

dreamdaisy wrote:

I have no practical suggestions whatoseover, but my heart goes out to you. Your plate is crammed to overflowing - perhaps finding some care for your mother could be a start but how resistant would she be to that? You also have to make sure that you get the time you need for rest etc otherwise your health is going to break down completely and then everyone will be up a certain creek minus the propelling mechanism. I wish I could help more but I don't have a clue: my sincere apologies. DD

Thank you!

The care thought has crossed my mind and it may become inevitable once we know what is actually wrong. I think that is important to establish first... Mind you persuading her could be a whole new ball of wax!

I think what I really need is some sun... now just need to win the lottery!!

Annie

annic4363

HI there

Me again! So now the Ma is driving me nuts!!! She admitted yesterday that she hasn't been eating and 'would I get her some Cup-a-Soup?'! Well no was my answer to that. Poorly as she is I think the last thing she needs is chemical muck! So off I shot and bought some fresh soups and then agreed to make her some soup myself. So yesterday turned into a cooking fest as I made her some Chicken Noodle soup..

Now I have to admit that baking is my relaxation lately. It is fairly new to me but I am learning fast. My husband is a fantastic cook and normally does all this in our house. I am relishing the fact that he can't do it - or I have to say interfere - at the minute and (modestly) I don't think I am bad! Yesterday my major therapy session resulted in Hummingbird Cake, Chocolate Tray bake and Shortbread!

Oh and the mother has now decided she might be able to force down a roast dinner tomorrow... I think 'I'm not hungry' should be translated as 'I am too much pain and can't bring myself to cook'.

Hey ho! Onwards and Upwards!

Chat soon

Annie xxxx

ironic

Hi Annie,
Gosh you are having a fun time.. not :roll:
Love the hummingbird cake! Well impressed.
Sorry you are having such a rough time of it. No use me saying rest when you can. Hope you can get some answers for both you and your mum. Good luck with your appointments next week.
Please keep us updated when you can.
Let Hubby do the roast tomorrow you have already done your bit with the cakes

Lv, Ix

annic4363

HI Guys!

Well here is an update as promised.

I have seen the Rheumy nurse today and am somewhat shocked to have an ESR of 32 which feels high to me.

She is lovely so I told her all the issues I have at present so she decided that could be inflating my ESR so is in a holding pattern to see if things settle down which is fair enough. She is also of the opinion that this foot won't heal now so I am probably looking at Surgery which she is happy to help the Orthopods manage.

So nothing really dramatic or new to report...

Oh for that desert lsland!

Chat soon

Annie xx

dorcas

Hi Annie

your rheummy nurse sounds supportive....have you been referred back to ortho for your foot or is she going to do that :?:

when will you being going back to see rheummy again?

how's you OH and your mum. :?:

full of questions , sorry, but have been thinking about you and wondering how things were and if the pressures were easing....hope so.

Iris x

annic4363

Hiya

I am still under an Orthopod for the foot who has referred me to a Physio.. Not at all thrilled with that as I cannot see how it will work unless the Physio has magic hands! IT IS FRACTURED... Anyway my GP is checking this and I have an appointment to see her about it next week.

I am back to the Rheumy in 3 months..

Mum and OH seem to be in a holding pattern - no better but no worse....

But at least I slept quite well last night so feel a bit better. I am also planning a girly spa trip which will be lovely! The boys just don't get the 'best friend' thing do they?!

Chat soon

Annie xx

dreamdaisy

32 isn't that high, not by my standards anyway!, but it would indicate that enbrel is not controlling everything. What's your CRP? Is it controlling that better? My inflammatory markers are CRP 5 ESR 1 and have been for over a year now, thanks to humira. The pain hasn't lessened, and my knees still feel 'inflated' but the figures don't reflect that. How often do you have your bloods done? DD

dorcas

Hi Annie,

there doesn't seem to be any shortcut for you with getting your foot properly fixed does there? :roll: glad at least your GP is doing something ... so let us know when you see him/ her next week?

A 'holding pattern' with OH and your mum's difficulties is better than things worsening that's for sure.. have you given any more thought to asking for OT or social services to assess what support they could provide? even some help might make an enormous difference...

wondered too if you or your OH were getting DLA....or your mum Attendance Allowance (assuming she's over 65 :oops: )
those allowances might also help with paying for support/ care/ getting about.

hope I'm not being too interfering....just want to help.

enjoy the 'spa'... your right... it is definitely a girly friend thing!

Iris x

speedalong

Blimey Annie life sounds very challenging at your end. Keep us updated - as surely it can only start improving!!

Speedy

annic4363

So here is today's update...

It turns out my poor old Ma has fractured her pelvis... no wonder the poor old thing is in so much pain and isn't getting better,

My concern now is that they seem to be more preoccupied as to why she has done this so easily than the actual fracture.. I have everything crossed that there is nothing sinister going on.. For those that do please remember her in your prayers.

I am sorry this is so short but I am exhausted having spent the whole day with her in A&E getting her admitted.

I will let you know what develops

Thank you again all for your love and support

Chat soon

Annie xxx

marion1952

Oh Annie

Really sorry to hear about your mother.. she must have been in great pain... ..

Hope that you can get some sleep tonight as I'm sure it'll be another busy day tomorrow..

Marion x

roses1

Annie,

I really hope your mom gets better soon and you look after yourself too! (((hugs)))

Rose x

dreamdaisy

I hope your mum has had a settled night in hospital, how horrid for her. I can see why they are concerned about how she did it - it's a substantial bone to break. She is in the right place, she should be looked after well, and that will ease some of the pressure on you for the time being. PLease let us know how she and you are getting on. DD

julie47

just sending love and support

love pfxx

ironic

Hi Annie,
So sorry to hear about your mum. Do hope they find out why this has happened. It might be that you will be offered some help and guidance for when she is discharged.

Just wanted to add my support to you and your OH. I wish I could do more.

Lv, Ix