Black Dog 22

Candy6 Thank you, she's beautiful, but I'm biased . I'm already on Gabapentin, although not a high dose. Nice that you got to see your son. Your day yesterday sounded very pleasant - dog walk, park, lunch and shops. A perfect way to spend the day.

EllieAnne You had a very busy day yesterday! Good to get all those things done. Could you join W.I. or anything similar? You might be like me, though, and find it difficult to go somewhere new. What an upsetting thing to happen at your GS's nursery. What makes some people spoil things for others like that?? especially for children.

SweetpeaSue Fingers crossed for your husband today, hope he gets a proper diagnosis and correct treatment.

nadateturbe I hope you're resting when you can and reserving your energy for when you need it.

Doodle Thinking of you, hoping your day will be a bit better today.

Wyllow3 Do whatever it takes to start feeling better about yourself. We all want you to recover.

I'm utterly fed-up. The Physio I saw (the one from 2wk ago who said "Oh yes you had a TIA" - I'd had a bilateral stroke, was in hospital for weeks, had to learn everything again and had 6 weeks of physio when I got home) insists I've got Osteoarthritis, despite x-rays being "borderline" was a waste of time. He's referring me to a different Physio at the other local GP surgery - I suspect because he didn't like me challenging him. IF this is the start of OA, I don't know why I'm in such pain and how I could possibly manage if it gets worse. He said "It's been coming on for 65 years". No point in talking to any of "them" at all. Sorry to be so miserable. Hope ALL BDers have a better day x

Just had an email to say I'm being referred to a Musculoskeletal department, who deal with - bones, soft tissues, muscles, ligaments and joints. I feel more hopeful now. Got our little girl today, so taking her out to a farm park soon. x

HVDY Oh I sense your frustration -' no point in talking to any of them' .
The very idea he is dismissive of your full stroke -one which needed a lot of therapy and medication to overcome is so hurtful. So glad to read your second post that you are being referred to musculoskeletal clinic and are optimistic it can help. Sure your lovely DGD will cheer you up this afternoon.

I'm so worried and upset and shaken I've taken 2 diazapam to calm me.
DH and I at appt for 9am and were in Dr's office an hr and half. Spoke to Dr first then he called in consultant Rheumatologist who did a ultrasound scan on his temporal arteries which took nearly half n hr. He said because he's on 30 mg of Prednisone it wouldn't show full extent of inflammation but thinks he needs a biopsy and that might not find inflamed arteries either (as he's putting up dose to 40 mg) but worth doing. He believes its GCA but the low inflammatory markers in blood tests were only borderline. (They were borderline for Polymyalgia but he has that). Dr listened to side of neck and there's a sound that could indicate vascular problem(med term Bruit I think) It's on same side as the temple where he gets most pain. They're sending him for Doppler scan on that side to check for artery damage.
I asked why he couldn't have had ultrasound scan when he went to Emegency day care. Apparently that consultant is only one that could do it and not enough Rheumatologists in dept. If he'd had it done then it would have been more accurate as his steroids were raised afterwards.
Consultant said he wanted BP taken in both arms so back to nurse. It measure 187 in the arm where bad pain was in temple and only 113 in other! Have since looked it up and if disparity is over 15/20 points there could be high risk of stroke. Over 60 it's difference in his.

He asked if our surgery was OK in making up prescription( he would have given him a hospital prescription then) DH said yes. But it's written on paper meds given within 14 dys. He needs this 40mg now. He's going to take 40 mg daily of what he has left but they'll run out in 5dys so he'll need to see GP and she's not on till Tuesday.

Forgive me for rambling -I've no one to talk to. I honestly think there could be damage because the inflammation caused by the GCA not picked up soon enough. First GP to blame , as he wouldn't believe me and it was on his records that he had a migraine when he had a slurred speech episode last Yr. He didn't have a headache then at all.

There's a huge shortage of Rheumatologist in UK and not enough to meet nice guidelines (2021 report)
He'll have to wait about 3 weeks for biopsy.

So sorry for long post. I feel sick with panic and distrust in our broken NHS .
I'm crying as I write as DH only just come in for a bath after digging ground over for an hr and dripping sweat. He's worried and that's his way of coping but I'm so scared.sorry again all.

SweetpeaSue What a worry for you. I sympathise, I really do. It seems that the only way to get anything done or for anyone to take any notice is by "making a fuss" and constantly asking for help from healthcare professionals. It seems to be the same all over. I hope your husband will be able to get a prescription somehow, without seeing a GP. Could he apply via NHS app online? I do that. Please try to make him rest a bit. Poor man, he'll wear himself out.

Thanks HVDY It's the 'making a fuss' that DH hates.
I honestly think because of reason I needed MH services (Dr's cover up) could have gone against me, plus my not agreeing with the Urologist about not diagnosing IC after Distention and requesting referral to another. Perhaps that GP - who we've both seen since then, thinks my experience has made me neurotic. I mean why did he put in expedite letter to Rheumatologist (that we really had to press him to write) that 'Susan has been reading up about GCA and believes its that'? It's as if he was trying to influence him as he himself said he didn't think it was.

Anyway I was really quiet ( most of the time) in appt today to present myself as not a 'googler' and let DH do most of the talking. It was bloody hard. Especially when he was asked if he had pain in his neck and he said not really. He's been having pain in his neck the last couple of weeks!

He's worked out enough prednisone to take 40mg for the next week ,in meantime we'll have yo get a GP to put forward the new dose tablets. The constant didn't give a prescription but a piece of paper with the required dosage and tapering plan for GP to do. It took nearly 2 weeks for the surgery to give me the Solfanacin my Urologist requested but DH's prednisone far more important. Honestly with this condition he could lose his sight or have a stroke.

Oh dear shouldn't have started writing. You might notice I'm still wound up.
Sorry all.

SweetpeaSue If it means "making a fuss" to get things moving, so be it. It shouldn't have to be like that, but stuff it, we (patients) have a right to proper treatment. Try not to worry about the worst that could happen - stroke or sight loss - even though it's difficult not to. A lot of things can cause a stroke, one being high BP (mine went to 250 top figure after their mistakes (which they admitted and did a big report on. That, oddly enough wasn't enough to cause a stroke though, they said. Do whatever you can to relax and to help your DH relax too. I hope you have a better evening.

Chubby Chops enjoyed my home-made spag bol and has just been collected, so when DH goes out at 7, I'll have the house to myself x

Thanks so much HVDY I realise making a fuss is necessary sometimes. Certainly being persistent despite how it makes us look. DH comes over as so laid back and that's why I like to be there.
I hadn't realised BP could go so high until you told us what happened to you.
All because they accidentally gave you too much of another drug. We have to speak up don't we--it's a very sad state of affairs. The Rheumatologist that the Dr called in to DH today was 'on call' . He spent 1 and half hrs with him so was very kind and he told me how overwhelmed the dept was.
Hope your own pain hasn't been too bad today and the Gabapentin is helping.

Doodle Realise you're having problems postin so don't worry. Hope you've not had too hard a day.

Wishing all BDs a peaceful night.

Hurrah. Got GN back. Be in later

SweetPeaSue- Oh dear your poor head is so full of such frustration and worry. Would it be possible for another GP at your practice to prescribe those necessary meds?
It sounds like they were very thorough today although so many tests seem to have thrown up more concerns for you. What happened to you has made you understandably very mistrustful still. What you say about the broken NHS is sadly true I think.
Your DH has found a way to deal with his worries but I,m sure you’re frightened he,ll do too much. Please don’t apologise for writing about your fears and worries - you love your DH and are scared. Xx
HVDY- thank goodness you have a referral to the Musculoskeletal Dept . You need help - and soon.
I can’t believe the attitude of that Physio- how dare he dismiss what you went through with your stroke- it’s disgraceful and so disrespectful. Glad you,ve had your little Sweetie today.I bet she loved the Farm park. I expect her little chops got covered in Spag Bol sauce .
Enjoy your peaceful evening and hope your pain lets you sleep tonight.
Candy- I,m sorry your MiL has dementia too. She lost her husband last year didn’t she? She does well to see after herself doesn’t she but it is a worry for the future isn’t it.
So nice to spend time at your Sons- wish mine wasn’t so far away. He face timed me yesterday when I was out with DD so we had a family chat in John LewisShoe dept!! It’s good you can cope better with him being away but it’s not easy is it.
EllieAnne- I,m so sorry for your loneliness - it must be so hard for you. Would you consider W.I.? They are a very supportive ,kind lot at my W.I. - maybe it would be worth a try.
What a wicked thing to do to the nursery- what is wrong with some people.
Nadateturbe- sorry life has been difficult for you lately. You have a very brave positive attitude though and make the most of what you can do if possible. How’s the Art going?
Wyllow- so nice to see you posting a bit more - it must sometimes take a lot of effort. You do really well getting to the supermarket- do you go on your own?
I wish you could be kinder to yourself - you deserve to do all the things that most people take for granted. You are such a good ,kindly person with so much to offer and I hope that the new carer when they come can help you to start living the life you deserve.
Doodle- glad Sunday was a better day for you. Hope,you continue eating what you can as you need to keep your strength up for your Op.
Hope you,ve sorted your laptop problem out. I,m not at all technical so was no help at all!!!
Today we have been to the Church to tidy up and put flowers on DH1 and DS grave. It still feels unreal even after all these years . My DH is so good and always helps me.
Hope you have a restful night xx
Love to all,those not mentioned and those just reading.

SweetpeaSue It's ridiculous that there aren't enough doctors working (the junior doctors in Nottingham were on strike from last Thurs to this morning, not sure if that makes a difference). I took Gabapentin, Paracetamol and Codeine Phosphate this morning (Physio yesterday suggested that but I won't be doing that regularly - I walked around the farm park place (pushing the pushchair to lean on) but felt really drowsy (early to bed tonight I think)

ScaredyCat She enjoyed seeing the animals, crawled about in the sandpit, wanted to get hold of some free-range chickens (cried when we said "No") and got covered in her dinner but ate a lot of it. How kind of your DH to help you tidy your son's and 1st husband's graves. He must be a nice man.

DH is out with Son1 for a pint, so I'm going to have ashower, get my pyjamas on, see what's on tv. Love to ALL BDers x

Catching up in small stages.
HVDY glad you had a lovely time with Chubby Chops. A quiet night for you. Hope you’re comfortable and not in pain.
Glad you’ve got your referral. Hope it helps.

Scaredycat Years go by so quickly don't they and such a tragic and devastating thing as the loss of your DH and DS must be always there with you.
I'm glad your DH is so helpful to you at such a time you need it most.
Thankyou for your kind d post.
HVDY The first Rheumatologist DH saw was off on annual leave and the consultant today said * all* of her patients having long waits to see her again as not enough other consultants in the dept to take them on. There's a lack of Rheumatologists in the whole of UK.
Hopefully you will get used to the meds a bit and won't feel as sleepy. Not how we would like to be though.
Can just imagine your little DGD wanting to chase the chickens. She would be wanting to know what they are and what they felt like. You must be so tired after such an eventful day. Hope you have a good restful night.

Scaredycat how lovely your DH helps you to tend the graves. He sounds a lovely man and kind. I don’t know how you managed to cope. I’m falling apart at the seams here. Had such an awful day and struggling to snap out of it.
I’m so lucky to have a good friend don’t know what I’d do without her.

Sweetpeasue I can understand how scared you are but at least your concerns are being taken seriously now. I just wish the NHS would work as it’s supposed to.
With regards to the Doppler on the neck, DH had a blocked artery on his neck years ago and they operated and he was fine after. Is your DH taking blood thinners?
No point in telling you not to worry as we all would. Just hope your DH is ok. Try and rest tonight and I hope you both sleep well.

Doodle You are so very good to post about my troubles and they're nothing to your own . So appreciate your experience of the Doppler neck scan. Think the GCA has caused this but anyway ,glad to know there are solutions to blocked arteries - thankyou.
DH not taking blood thinners but I was giving him aspirin as I knew the GCA could cause strokes so I alone suggested he take them this last couple of weeks.
Consultant understood why as he said this aspirin treatment for GCA had been looked at but nice guidelines don't recommend it over here. Though American Rheumatology does. Anyway DH is going to continue low dose aspirin for now.
Just thankyou for your caring but how have you been? Hope your day hasn't been too bad. I imagine you must just be 'treading water'. Giving you a warm hug and sending love. Xx

SPS, I realise you've done a lot of writing already but possibly writing it all out poin tby point and numbering them might help?
Is there no trusted friend or ally at all? Awful situation.

Hope all BD folk are as OK as we can be.
Better day for me. Did some exercise, don't like it but it helps!

I'll try to post early tomorrow. Shouldn't wait until night time.
Scaredycat Such awful sad memories for you. Your husband sounds so caring.
Sweetpeasue Doodle HVDY sending love. So sorry for all you are going through.
Sorry I can't write more and have ignored people but I have read everyone's posts.
Hope you all manage to have a peaceful night.xx

Thankyou Zakouma66 I'm beginning to understand what's happening just by writing on BD.
I have no one I can talk to.

Sorry - just realised. I've been offered help if I need it by MH services I'm under. But I don't want them to think I've relapsed. This is just extreme pressure that anyone would experience in same situation.

Doodle- I,m so sorry today has been one of the bad ones. I know it doesn’t feel like it but each day you get through is one day nearer to feeling stronger. You have had so much trauma and sadness this last year but you still have such strength of character to keep going and even think of us too. One day the sun will shine again- I promise.
I coped like you because I had to. I had 2 surviving teenagers who had been through hell to care for. Also I felt that I had to live my best life for those who no longer could.
I,m glad you have a kind friend - they are to be treasured aren’t they. If you ever need someone to talk to I am here as I know we all are. Take carex
Zakouma- glad you,ve had a better day. I think you always feel better if you do something physical even if you don’t always feel like doing it.
HVDY- how cute Chubby Chops liked the chickens.
Yes I can’t tell you how much I appreciate DH coming with me to the Church. He’s always done it.
Enjoy the tele - guess what we have the footie on!!!
SweetPeaSue- hope you and DH have a restful sleep and that you manage to,get those meds sorted.

I'd grab any help on offer Sweet Pea. You could get in first by saying you have not relapsed but this is very challenging.

Just a thought!

Scaredy-cat I have just looked up w I in my area and there is one but it is off July and August.
I may look into it after summer.
It’s hard to explain but my loneliness is inside myself and being with people doesn’t always help. But I do make the effort because it’s not good to be alone all the time.
Thinking of everyone tonight.

- [ ] Doodle yes what a relief when GN came back on for you. “Someone there”. Its scary feeling you are falling apart at the seams, its grief of course the long hours - I wish there was something to help - just sending you lots of love x
- [ ]
- [ ] HVDY I’, very glad to hear about your referral and hope seeing chubby chops helped - after the awful start.

What an exhausting and complicated day, Sweetpeasue, it is scary knowing the lack of resources. Perhaps you could get a prescription sooner by getting the hospital to send it to your GP electronically. It is difficult when DH won’t tell all. And dont be afraid of reaching out to MH out of fear of “assumptions” because you ere afraid of that before - and it turned out OK.

Scardeycat yes it’s a huge effort to get past there being no point, which has been today.

I really hate myself for not doing things that could make things better and especially physical deterioration because of lack of exercise sat indoors. It’s a feature of my particular MH stuff.

But I really value BD’s and all of you in here.

Bless you for your sad day and flowers and those memories.

Well done on the exercise Zakouma you are right it helps. It’s an achievement.

Night night nadateturbe

Night night BD’s

Scaredycat Beautiful and kind words to Doodle.
EllieAnne Your words brought tears-- 'a loneliness inside myself' . So well put and describes that isolation from others. I do hope you do find WI a help after the summer holidays. Take care of yourself EllieAnne. x
Wyllow Wish I had words to make a difference to your situation.I know about hating oneself and it is so destructive
So glad that BD helps. . You are cared about here Wyllow and we so want you to be well. Thankyou for the help about prescription.
Doodle I think of you every day and just send love and warmth across the 'vibes' or whatever is between us all that isn't actually distance of miles.

SweetpeaSue I wonder why there is such a shortage of Rheumatologists - is it because they are going to work abroad? I hope you both had a decent night's sleep. Contact the MH team if you need to, they will understand.

Doodle ScaredyCat* has been through the pain of losing a beloved husband, so she knows how you feel, more than those of us who haven't experienced the same loss. for you both.

Zakouma Glad you had a better day. Exercise does help. I'm going to return to aqua aerobics next week.

ScaredyCat What with tennis, election stuff and football on, I watched a very old episode of One Foot in the Grave then Super Surgeons but was dozing so went to bed at 10.

Wyllow3 The lack of motivation to do things is common with MH problems, I think. I can remember, at my worst, mentally, sitting staring at a wall for hours solidly. I hope things will improve for you soon, we all care about you and want you to get better.

EllieAnne The loneliness you feel must be awful. I hope you manage to find a group, perhaps U3A or even just something at a library?

nadateturbe, Whiff, Allsorts, Candy and ALL BDers - hope you're all ok.

I must have overdone things yesterday, as I've got a lot of pain already, but my friend is picking me up later, going out for a snack & coffee. It's cool and raining here. Hope ALL BDers have a better day x