Black Dog 22

HVDY hope you manage to enjoy your meetup without too much pain. At least there won't be hot weather to contend with, thankfully.
Eye drops for life most likely. But different ones, I hope
Its cold and windy here. Brighter later. That's OK.
Thinking of you Doodle.
Hope you get to see the GP Sweetpeasue.
How are you EllieAnne?
Hope everyone else is OK.

nadateurbe It was nice, thanks. SIL was using a walking stick (aching knees), she's 5 years older than I am (she's almost 70). We met at a pub, had coffee there, then went to the pub next to it and had lunch, then moved a short distance to Bird's, bought cream cakes, and sat on a bench to eat them .

EllieAnne How are you? I hope I didn't offend you.
SweetpeaSue Did your husband get to see or speak with a GP?
Doodle Hope you're having a better day.

How has everyone been? x

Oh HVDY you made me laugh. That was a good day!

Wyllow Your remark about every hr being so bleak is so terribly sad. I wish we could help. Are you certain you're on right medication.
When you feel so low it's a huge effort for anything especially questioning Dr's - I'm just thinking of my DH feeling too ill to 'bother' the Dr as he was told so many times it was ordinary headache ,he couldn't be bothered and didn't want to make a fuss. It was a good thing he wasn't living alone. Just a thought Wyllow.
Don't underestimate you going shopping -you are making a big effort and to keep some communication with son. Sending a hug -we do indeed have basketfulls here .
Nadateturbe Glad your eyes weren't too painful last night. Awful lot of eyedrops but it's good if they are working . Hope it's the same for you today. First dry day here for a while- started foggy- but actual sunshine now.
Scaredycat Lindisfarne, /Holy Island is beautiful isn't it. I've been once and didn't see half of it. Did you buy some Mead? Hope you are not too tired today.
HVDY Oh I do hope you were OK when you met your SIL today. You must be so fed up with it all and the loss of your independence at being unable to drive. Yes DH did get an appt thanks.
Got a F2F as DH had a sore. growth on his foot that needed looking at. She says can't do anything about BP , even though it's high as its low in other arm so we need to wait to see Rheumatologist. She didn't even actually take his BP while there. He had to see the GP as his Prednisone would run out as still not got more from the consultant's prescription 2 weeks ago. On telling her she said we wouldn't as we'd need to hand in a paper from the Rheumatologist. I told her we had done! Honestly- she didn't even ask him if he still had headaches or felt any better with the raised dose. I asked her if there was anything to look out for with his hand tingling all the time in arm with low BP. Told us usual stroke signs but I still had to ask.

Hope everyone is OK today. Back later.

Wyllow Just re-read my post and I'm sorry if I'm barking up wrong tree. Just want to help but realise I may have sounded too forward. I know nothing of your illness -just concerned . I hope it hasn't all come over wrong. X

Sweetpeasue I'm sorry. That wasn't a very comforting appointment at all. Did you not get the prednisone? What is your DH supposed to do without it?
I understand the problem with BP. Forgive me if this sounds stupid but maybe if your husband gets the arm treated his BP will go up in that arm and they'll be able to treat the high BP. I hope so. You've maybe talked about this before but I think prednisone can raise BP. It's very difficult and frustrating when something to help one thing causes another problem.
(I'm a bit like this with the eye drops lowering my BP, which is already low).
I do feel for you both. I think the GP could been more sympathetic.I hope after Fridays biopsy things move quickly and DH gets some help..

No Sweetpeasue just to put your mind at rest not barking up wrong tree, be in later.

Wyllow like you I’m struggling to find a reason to go on. Obviously my family is a big reason but it’s hard when there seems to be no joy in life anymore. Please will you keep trying to get out and see people. I had a reasonable day today. Not happy or exciting just not so bad and I’m trying to stay calm tonight. I know it’s hard but we must keep trying. We all want you to get your life back. We remember the Wyllow of old.
Sweetpeasue bless you I know how much you care. There is little that can be said or done to help me I just have to keep going. Today wasn’t too bad. Very shaky this morning but then went to see a friend for coffee and had an afternoon blitzing our spare bedroom. I’m exhausted tonight.
Not a very satisfactory meeting with the GP today. Doesn’t sound as though she was in the ball at all. You must be worried about looking for stroke signs. One of the ones they told me about when DH had his TIA s was to get him to grip my hands hard and see if there was good pressure from both. Also smile but I expect you know all this already. It’s frightening isn’t it. I know when DH had his TIA s I was too afraid to sleep at night for ages in case something happened.
Scaredycat I love Lindisfarne such a beautiful and holy place. So peaceful. Hope you’re having a great time.
nadateturbe glad you got back to the caravan and had the joy of a lovely sunset. Hope you can relax and rest there.
HVDY sounds like you had a lovely time with your SIL.
Love the idea of you sitting on a bench with your cream buns 😊. Hope the sun was shining for you.

Nadateturbe I must apologise again-sorry I didn't explain it properly at all. DH must take Prednisone as it will be ongoing treatment for at least a year and often a couple of yrs. The GP provided another prescription of Prednisone as we couldn't get the receptionist to give one quickly as the paper consultant gave us had a 'within2 weeks' printed at top. My own for Solfanacin from Urologist had same thing on and I didn't get it for 2 weeks. But Prednisone is different as you can't just stop taking it as needed for things like GCA. Indeed it should be given immediately if GCA is even suspected as the inflammation behind eyes can very quickly cause blindness. The Rheumatologist asked DH , as he was writing it, will there be any problem with your surgery providing it quickly and DH said no, because he didn't think there would be. He didn't know it was written on one of these '2 weeks' papers until he saw it later. Knowing the risks of not taking the steroids promptly the surgery was wrong to tell DH they couldn't get it promptly. We didn't take it further as DH didn't want me too.

GCA causes inflam.ation in temporal arteries and down carotid arteries in neck and down to Aorta if not treated early. Yes the rise in steroid dose will have caused higher BP. It's the lack of good flow in the arteries that's caused his arm low BP in that side.
GP just said to wait until Rheumatologist sorts it but I'm scared that he could have a stroke. I honestly don't think the GPs know much about it. She's also said before that the Prednisone wouldn't solve the headaches and he'd need painkillers- total rubbish. When on the correct dose symptoms should go within about 3 dys. It's getting the right dose though. Should be 40-60 mg to start -DH on 40 but is getting some headaches but much better. It's the terrible fatigue ,he seems exhausted but that's prob the blood flow problems in arteries.
I've gone on a lot so sorry. I'm just anxious. Hope I've explained better.

You've explained well Sweetpeasue, and it is complicated. It's as well you understand everything. Of course you're worried about a stroke. But you can only watch your DH. And hope and pray he's all right until the artery problem is dealt with. You are coping so well. Sending hugs.

Thanks Wyllow
HVDY You crept in behind me. I too like the image of you both sitting on the bench with your cream cakes. Sounds like a lovely day with your SIL and glad the sun shone for you. Next few dys are meant to be sunny but hope it's not too hot for you.
EllieAnne I was wondering how you are too.
Doodle I'm glad you have some friends (though not surprised) so you can have a coffee with someone and just get outside for a while. You must be so tired now and I hope that means a peaceful night for you. You were in my prayers at 4-am this morning. Hope it's not in bad taste but I'd taken painkillers and I always feel more calm when they get to work. Couple of glasses of wine does the same too. Not sure that's very 'spiritual' .🤫 That's really quite helpful to know , the hand squeezing thing. Thanks Doodle. I can understand you not wanting to sleep yourself. I'm always asking him how he is if I think he's awake during the night. I ask him if he's asleep -he must get fed up with me.
Much love and more hugs.x

Thankyou for the hugs Nadateturbe I don't really know everything but we've not been told very much so I expect the Rheumatologist wants the results of scans before we know everything.
I had to read alot when Dr's didn't tell me what had happened when Hysteroscopy went wrong. I know I need to limit it as it can make me more anxious. Hope you rest well tonight .

Doodle It's good to hear from you. I'm glad your day has been ok. I hope your evening is too. The feeling of no joy is awful. But you are getting through each day so well, and some day the sun will shine again. Of course it will never be the same, and it's ok to have bad days, but it will be better and you have your loving children and families. Sending much love.xx
Wyllow3 I'm sorry things seem so pointless and you don't want to go out or mix. just a thought, you manage to get to the shops once a week. Could you possibly force yourself to do it twice. Even for a very short time. Just one little step. Sorry if its a stupid idea.
I would love you to get a little of the old you back.
Just seen your next post Sweetpeasue. I too feel better when pills start to work. And like you am often awake in the wee small hours. Nothing wrong with a glass of wine. I have wine with dinner most nights.

Nadateturbe Hete I am again!😂

I didn't mean it's 'not very spiritual ' to have a drink. More that it can't be good to feel able to pray better when squiffy or doped up with tablets? Think the co-codamol give me a calm feeling but the downside is can get lot of nightmares.
Just didn't want to sound goody two shoes.

SweetpeaSue The GP your husband saw didn't sound very sympathetic or helpful. When is he due to see the Rheumatologist again? Sorry if you've already said. I was ok today, thanks. SIL was using a walking stick, so her daughter must have felt she was out with a couple of old fogeys . I was told the MSK place would contact me within 2 weeks, but to ring if I hadn't heard. The 2 weeks are up today, so I'll ring tomorrow.

SweetpeaSue My BP went up to 350 top figure when the hospital gave me the wrong drug, but they said that didn't cause the stroke , but keep an eye on him. Any symptoms (one is being able to stick out the tongue, as well as face, arms, speech and time), 999.

Doodle I'm glad you had a bit of company today. It must be awful to be grieving like you are - I can't pretend to know how that feels, but I imagine keeping busy/seeing other people might be a little bit of a distraction, for a short while. I hope you sleep ok tonight after the work you did today. Much love. x

Nadateturbe Hope the weather stays decent for you there.

Wyllow3 Thinking of you, hoping you have some brighter days soon.

DH out with Son1 until about 10, so I've faffed about online looking at things/ideas of what to get Son1 for his birthday (he'll be 43, where did all those years go). Foxy has got a mate! Smaller than he is, they were chasing each other around the other night (saw them on the camera the following day). Love to all for a restful night x

HVDY My son2 is 43 just gone. It's frightening the yrs passing so fast. Aw how sweet that you saw Foxy's mate and they were playing together! It must be wonderful to see your camera footage the next day. You must have been so excited to see that.
Thanks for the tips about stroke. Appreciated. It's ridiculous that a top figure of 350 could not be reason for a stroke, it really is. They gave you the wrong drug, on their records, they admitted as much. So much is covered up . No wonder we feel we need to be vigilant.
Saw Rheumatologist 2 weeks ago today. He told us then he'd make sure we saw him in 4 weeks. On letter to GP he says 4to 6 weeks. So we're hoping for an appt through the post soon. Biopsy on Friday so expect the scan assessments will be with him soon after.

Love to all BDs and hoping you all sleep peacefully.

Evening all.
Doodle no, we’re not at the caravan at the moment we came back on Sunday as we had some family stuff on the past few days. I noice you got the Calm app. I listen to mine through cordless ear phones (the small ones that fit inside the ear). I prefer to listen that way. Haven’t tried through Alexa. I’m sorry you are struggling and hope that you get a cruse appointment soon. Are there any online bereavement groups you could join in wonder? Sometimes talking to those in the same position can help. I wish there was more we could do. Are you on AD’s and if so, could you increase the dose a little? I did and it made a big difference to me.
Sweetpeasue another nightmare with the medics for you. It’s so disappointing that when you finally get an appointment, you don’t get the help you thought you would. I hope your DS gets the prescription he needs soon. It must be worrying for you and stressful having to be alert for symptoms all the time. I hope you are managing some rest.
Nadaterturbe glad you got back to your caravan. I hope it does you good. Beautiful sunset.
Scaredycat I had to google Lindisfarne too. Beautiful. I hope the weather was kind for you. It’s been awful here but better this afternoon.
Wyllow I’m sorry everything is a struggle for you but you really are doing very well coping. I hope there is some light for you soon. I know your medication is complex, but could something be given to help your mood? You need that “lift” that could make all the difference and more motivated.
HVDY your meet up sounded lovely. Hope the rain stayed away and you are pain free, or at least able to cope with it.
Bed for me now, I’ve had a busy day doing family stuff. An extra dog to look free for a week now too! Love to everyone not personally mentioned. Night all xx

Hvdy I don’t know what you mean?
I’m no offended about anything.
Just not really feeling up to writing much just now .
I got my son a new kindle for his birthday.

Sorry Sweetpeasue I meant DH not DS. I pressed “post” too soon! Xx

Sweetpeasue I understand now. Yes, I'm pretty sure praying while under the influence doesn't count. 😁
HVDY I'm shocked at how high your BP was. And it didn't cause your stroke. Hmm. Hard to believe they said that.
It's hard knowing what to get for presents. And where did all the years go? My son is 53 very soon. I had him when I was just 20. The childhood days pass so quickly.. How lovely seeing the fox and his friend playing.
Candy it's that time of year when pets are passed around as family go on holiday. I hope it doesn't take too much extra energy.
Hope you're OK EllieAnne. A Kindle is a good idea. I love mine.
Wishing everyone a peaceful night xx

Sorry meant not offended

Thank you for the understanding on here yes I wish the Wyllow you first knew was there. Read all your days and taken them in but not up to commenting but sending warm BD hugs out. xx

SweetpeaSue Best of luck to your husband when he has the biopsy. I can't imagine that will be pleasant. It's about time something was being done about his problem, but he should have had all this ages ago. You and he must be longing to see the Rheumatologist.

Candy6 Thanks, the pain is bearable at this moment. How many dogs will you be walking? Enjoy.

EllieAnne Good, I'm glad you weren't offended by what I said, I was trying to help. Kindles are a good idea, but Son1 likes actual books. I hope the weather is better where you are. It's sunny and warm already here.

nadateturbe A hospital consultant rang me, told me all that. They then did an investigation (their idea, not anything to do with me) and sent me all the written report, detailing many mistakes that had been made (one was, alarmingly, that the drug had the wrong label on).

Wyllow3 Koko, please. Much love.

I ended up getting Son1 a voucher for a popular restaurant in town, a Next voucher (he never buys himself any clothes or spends anything on himself apart from computer stuff and the odd few craft beers) and a voucher to do axe-throwing at a place in town, he'll love that and it's apparently trendy . He can either take his GF or a mate.

Hope ALL BDers manage to see a bit of sunshine x