Eek!

vonski

Hi
I went to my Drs. appointment today to speak about OA and RSD as arranged. He told me one job at once so he took RSD and said he would refer me, good I thought. Then he told me the referral was to Bath approx 250 miles away :shock: That is the only specialist centre so hubby reluctantly agreed, he the one that has to put up with me squeaking like a mouse on long car journeys.
I also went to hospital to see about my wheelchair which has been causing me problems. Lady that I saw is getting me a new cushion plus one for my back, probably highering arms and the seat is being raised because my legs are too long for foot rests and they can't be highered anymore.
Through all this my hubby is making it obvious to me that he is fed up of the last three years.
Love
Vonski x

Ankyspond

At least you are being seen by the right person, why not break the journey and stay overnight in a cheap travelodge or premier inn? As for hubby prob having an off day, but then he is a man and they are strange species. X

tjt6768

us strange :shock:
Pot, kettle, black :eek:
My God, all that way :???: ...
I do hope that you can make a trip of it.. It's a long way to go for an appointment.. As is mentioned the travel doodah hotels are good, or there is late r00ms.com we use that all the time, had some great stays away.
They had better give you a great appointment and treat you like royalty when you get there, haha..

Best of luck

Ankyspond

Ooops forgot to say that of course the male species on here are exempt. Xx

tjt6768

I should think so Anky. Lol

hileena111

Yes, I totally agree.....make a few days of it...stay overnight at a Pre...r Inn. We went to Tenby in Wales {Live in the N.E} so thats a long journey.
Apart from stops for coffee we booked in at the other one { T. L.} halfway through the journey. This particular one had an upstairs and no lift would you believe :eek: ......they managed to find a downstairs room for us so if you do decide.....make sure they know you are disabled.
There is no point in going all that way and not making a short break of it and you are being seen by the right people
Love
Hileena

dreamdaisy

Oh dear, 250 miles? That is a trek and a half, no doubt about that. I would agree with the others, turn it into a mini-break, do the drive, the appointment, then stay over night and have a look round the environs the next day. Bath is lovely (if a bit hilly), Mr DD and me were there earlier this year.

As for the 'displeasure' about the last three years, please point out (gently, quietly but with some force) that it hasn't exactly been a barrel of laughs for you either. DD

traluvie

That is a long journey..

Bath is a lovely place so as the others suggested maybe stay over. that way you get a break and some rest to recooperate..
Really hope it goes well..What is RSD ???

mig

hope it goes well from me too,what is rsd?Mig

barbara12

Like the others have said Bath is such a lovely place, I hope you can stop overnight, but I suppose it depends on commitments....I do hope things come together very soon.
You take care, and please let us know how you get on.

elnafinn

Aw dear Vonski

Although it makes sense to see the specialists in RSD, that is an awfully long way to travel. I can understand that you may not wish to stay overnight anywhere because of your problems. This is a difficult one and I am sure that hubby, was shocked and angry, hearing this appointment would be so far away, as you would have been, both of you for different reasons, perhaps. Hubby probably spoke like he did and then regretted it. We have all said things at times, that we wished we had not. It is yet another very difficult/testing time for both of you. He will get annoyed, cross and upset as you do.

I am so sorry that things are not at all good with you atm and have not been for a long time. You have always had such a lot to contend with, one thing after another. I think it is good that you are talking to us about it, because it does no good bottling this sort of thing up inside. You will explode.

I wish I could think of an easier solution but just cannot see one, other than to travel to this centre. It is a shame that these specialists do not travel around the country a little to make it easier for patients with RSD to be seen.

I am thinking of you although I know that is not much help. Do please keep in touch.

Love
Elna x

kathbee

Ooohh Vonski

Thats a huge trip.
Plenty of comfort stops for you I would think.

Hopefully it will be a good outcome for you.

Love Kath xx

ironic

Hi Vonski,
Wow that is a daunting journey for you both. All you can do is wait for the letter to come through and then decide the best way to go about things. It will have been a shock for you both so it might be that your hubby is just overwhelmed with it all at the moment.

Good news that you are getting your chair sorted, will this mean you will get a temporary one while it is being altered?
Gentle hugs Vonski,
Lv, I x

nanasue

Sorry to hear you have to go so far, but like the others said break the journey if you can. As for OH, just remember as he is a man he will not have a lot of sympathy/patience, that is the nature of the beast. Just remember when he has a cold (manflu) and he makes a big fuss remind him he will get over it but you don't have that luxury. My OH is just the same and unbelievably he has aknylosing spondylitis and OA of knees so you would think he would understand, but no, his pain etc. is always worse trhan mine (I have RA and other stuff), so I think that's just how they're made, if you get a good one it's very rare, an endangered species I think :roll:
Seriously though, I hope you get it sorted, good luck,

Sue x

julie47

Hi Vonski

I am shocked too at the mileage you have to do to see a specialist.
I hope that the consultation goes well for you.
Take care
Juliepf x

vonski

Hi again, Anky, Tony, Hileena, DD, Traluvie (love the name), mig, Barbara, Elna, Kath, I, Sue and Julie I hope I haven't missed anyone.

Staying over is something we will have to do but hubby has googled it and thinks I will be an inmate, not again but I suppose it's a different place. Or he could just be hoping I've read in an arthritis research mag that Dr. gave me that one of the drugs they use is ketamine neigh neigh. It's called CRPS in it but there is quite a few similar things, RSD, CRPS and Erythromelalgia, hopefully this visit will find out which. Tony I hadn't heard of R00ms but hubby has. Sue you are right, men never have colds just flu
Mig does this answer what you asked? all I really know is it hurts. I the hospital are supposed to be sending someone out to me to do it so hope they'll get here before I go. Elna we've always been the same, some my friends were taking bets on my Wedding day wether I'd turn up or not as I was late. Also Hubby has been on google again and found out there is now a specialist team in Salford much closer at 30/35 mls. and he says he can do that daily as he used to do for work.
Love
Vonski x

elnafinn

Dear Vonski

Marvellous ain't it? Your lovely hubby goes to the trouble of googling and finds a specialist centre much nearer to you. Why didn't they know that where you went for your appointment?

I do hope that you will be able to be seen there instead and you do not have to stay in but if you do it would be better all round wouldn't it?

You sound a little brighter tonight, I hope I am right.

Chin up, it is good that you are posting on here again, sometimes you go AWOL for ages and then I really do worry about you.

Love
Elna x (((h)))

vonski

Hi Elna
Lovely hubby???? he just like messing about on computer You have one of those hubbies but mines not bad though . I have never seen anyone about this it was neuro surgeon that told me I had RSD nothing else and the people from the helpline that said Bath. I have just e mailed them to see if there is another, maybe Bath is the best. I have to go through physio and other things that could help plus try various meds. With my track record just lately I'm not looking forward to that. I don't really care as long as they can do domething to ease the pain Hubby says he will go walking and explore Bath which will be good for him, 10 mls a day
Love and gentle (((((())))))
Vonski x

julie47

Hi Vonski

Perhaps after your first consultation at bath they will, if you ask them transfer you to the hospitals nearer home. You may be right in thinking that the one in bath is probably more specialized and that is why they chose that hospital. I have my fingers crossed for you that your consultation goes well.
Take care
Juliepf x

traluvie

What Julie said might be possible(once they have seen you then they can refer closer)..Worth a shot..Will save long distances eh?
Whatever the outcome i hope you get some comfort soon ..Thinking of you..x

vonski

Thanks Julie and Traluvie

I hope you are right I would love to be closer to home The way people talk about the crew in Bath they are gods in their league so hope so.

Love
Vonski xx

skezier

hi Vonski,

sorry i am so late here.

Bath is a good place and maybe the one your hubby found is as good though and might be worth seeing about? If you do go to Bath maybe they would be able to really help you and make it easier for you?

I did a lot of miles in one day recently and cus I had to get back i didn't stop over. it was way to much and took me days to recover so flower if you do go make it a 2 day trip if you can. lots of stops like Kath says and well if you have to go there just take it as easy as you can.

i so hope the nearer one will be as good and you can go there.

again i am sorry to be so late. Cris xx

elnafinn

Only the best for you dear Vonski. Even if it will be difficult to get there, it is best if at all possible to attend this special centre and take it from there.

Love
Elna x

vonski

Hi Cris I have heard good things about Bath, just need the good weather. I hope you are managing everything.
Elna I e mailed someone on RDS who said I should post on forum as it turns out there is London, Liverpool but she did say Salford is very clued up on RSD so fingers crossed. I could ask if anyone has had good/bad esperiences of any. Thing is I don't really know what's involved a Neuro, Rheumy, Physio and Pain Clinic so will I be greedy and get them all? what me
Love
Vonski x

vonski

Eek doesn't come close. I've just found out that there are only 2 good ones, Bath and London but Bath is best. It is for 2/3 weeks is that another long stay in hospital? and how much does it cost? I suppose I'm lucky it's a while since last time. Physio is one of the main thing in this treatment so hope Dr. can find one closer to home. Hubby was coming with me, rubbing his hands together now
Love
Vonski x

skezier

Hi Vonski,

if Bath is the best and you can do it it might be worth it. 2/3weeks is a long time flower but if it leads to some help and some treatments well it might be worth it.

i don;t envy you having to go through all this but so hope you will get some help from it all. do you think Salford is good enough cus it would be a lot nearer.... oh flower horrible thing to have to try and decide on but hang in there. hugs and a cuppa, Cris xx