Black Dog 16

HVDY Internal burning sensation sounds quite unpleasant. Though the side effects from the steroids are much worse than that.
I was diagnosed with Alopecia Androgenetica just after mum died over 20yrs ago. Can see scalp through hair at top. Ive noticed the hair shedding lately is much more rapid. To make matters worse Ive been completely white (genetics, runs in fam) since about 50, and because I've always dyed it, the white shows through very obviously now hair is thin so am dyeing it every 2 weeks. 1 sis has same problem.
I know it's not going to kill me and other people have worse things, but it has made me so embarrassed. Sun shines-hairs=scalp more visible
Wind blows =hair like nest
Wet weather a nightmare. Just admitting it here makes me feel ashamed.
Cant seem to contact my son 2. Haven't seen him in 3 weeks. Must be busy.
Your little new GD will just pick the name she wants to be called anyway so son shouldnt worry. Tske care. x

Hospital for us today and tomorrow and Thursday. At least we’re keeping the NHS busy. Had a lovely hot chocolate at the hospital cafe. Naughty but so nice.
Sweetpeasue good to hear you’re meeting your first consultant Saturday. Hopefully he can put your mind at rest.
You have a such clear grasp of your problems when posting here. Somehow you need to convey that to the doctors. Some written notes and a nice consultant would be helpful.
Your hair loss could well be stress. My mum lost a lot of hair when she was ill but it grew back. Is it the side effect of any of your meds.?
HVDY that’s a long time to be on steroids. I’m amazed you haven’t had a review in the meantime. Do you have any blood tests to check on side effects?
I’m pleased you bought lots of things for your other granddaughters too. My mum and dad always made sure they treated all their children and grandchildren equally. We have tried to carry on the tradition.
How about the other little girl is she excited about having a baby sister? Have your son and his GF decided on the baby’s name together (apart from the middle name that is)
Glad you had a nice lunch with your friend.
Candy no need to apologise. You’re still much fitter than me. At least you thought about going swimming 🤣
Thank you, yes it’s so nice to be able to sleep at night without having to get up with DH.
Wyllow it’s so easy to overdo things if you’re feeling ok. Then it wipes you out after. I am off to physio Thursday and a bit anxious as to what she/he might have me doing with my wrist. It’s still very painful. Sorry you twinged your back again. It’s obviously a vulnerable area. Does laying on your back help?
nadateturbe I’m another who’s mind starts going into overdrive when I go to bed. Either that or I get some strange dreams. I dreamt last night that my SIL had another baby and I had to help her look after it. As she’s 60 I don’t think it’s a likely scenario 🤣
Is it hard for you to get out sometimes. Could you sit in the garden at least and get some fresh air. I find these days I get really tired after I’ve eaten. I’ve been trying to remember that when dishing up dinner as a reminder to eat less but I keep forgetting.
Hope all BD are ok. Nanny still wondering how you are getting on. Whiff, Ellie Anne, Allsorts thinkjng of you too. Scaredycat hope you’re having a good time

SweetpeaSue My legs/feet don't ever itch. I get an "internal" burning sensation, but not all the time. They ache at times. My hands get a pins and needles sensation, some days. What's causing your hair loss? If you could face it, a hairdresser might be the best person to advise you about it, and might be able to style your hair so that it looks fuller.

nadateturbe Sorry you don't feel so good. How about trying scrambled egg or some soup?

Son2 called round, on his way home from work. First time we'd seen him for about 3 weeks. I gave him a book I bought, about being a new father, from birth to 3 years - he'll need all the advice he can get. He isn't happy that his GF plans to have her mum's name as baby's middle name (It doesn't bother me). Hope everyone's been ok. DH just said "Shall we put the heating on?" x

Quick comments. I wonder Wyllow3 will clearing out be cathartic in some way.
Sweetpeasue. You're not paranoid. Don't be intimidated by doctors. Good advice from Doodle about explaining .
HVDY your friend will have some explaining to do 😁 Hope the rash doesn't get worse. At least it's not painful.

In bed, half asleep, can't understand, slept most of last night. No walk for 2 days. Not even very hungry. Have managed some chocolate buttons. 😋
Hope you are all OK.

HVDY It must seem strange developing a rash yet no pain. Isthere itching? Sorry if you've already mentioned this.
Nice time with friend.( You could commiserate over cheesecake.)

DH cleared away his stuff ( tools, garden shed, batteries/screwdrivers/pkts nails/all in my T-towel draw!)
I sorted my medical papers/letters/scans/records/ jottings in excercise book/folders and moved most upstairs. But it's all still in my head. DH dyed my hair. I'm so alarmed at the amount of hair loss.Everytime wash hair water wont go down plughole, theres handfuls.
So embarrassed while out, I notice women looking at my head. Cant see hairdresser. Too much anxiety but first things first.

SweetpeaSue Don't worry about offending any doctor etc. Someone, somewhere, caused your problems. We all feel the need, sometimes, to vent here. That's the good thing about BD. I noticed another new rash this afternoon - it starts as purple dots, under the skin (similar to when you knock yourself), which then turns to orange-brown in a few days. No pain, though.

It's been grey and overcast here, but I met my friend, had lunch and cheesecake (she's put on 3.5lb this week, she goes to Slimming World ) and then I got my nails done. Hope everyone has been ok today x

Morning everyone. Cold and overcast here(North-East coast)
I don't know what I'd do without BD. It's good to feel that caring support-just a few kind word can make all the difference. That connection is very real.

Doodle Hope your knee is holding up. My left knee is worst and your right knee's the prob. Was going to say we could do a swap, but that doesn't work out does it? 🤔. You hit the nail on the head by guessing I find it hard to be 'matter of fact' about it when discussing it all. I have to mention the botched Hysteroscopy in case anything is stemming from that, and that's where I can get nervous as I'm aware it's awkward territory, being such an emotional subject for me. I'm placed in the same situation now as I ever was at the beginning regarding seeing Drs--being aware of offending them and knowing I can be seen as a paranoid patient and not someone who has genuinely been deceived. I still feel angry that through no fault of my own(unless my fault was trying to find out what happened and formal complaint) I'm put in this situation.

Here I go again - - didn't mean to write so much about self - - just so much injustice and I need to keep it in Pandora's box.

Wyllow Last session with counsellor then I would need to reapply for more. Do hope your back isn't as painful today. Delving into past emotions in sorting Art must be so hard.
NadateturbeThankyou so much for your hug. I hope your night wasn't too bad last night. Do you have your Art group this week?
HVDY Hope your legs didnt keep you awake last night. You will feel so frustrated at having to take the drugs for another 5 weeks. So hard to communicate with Consultants now.
Hope you have a lovely cheering time today with your friend. So exciting that the birth of your new little GC being soon.

Hoping all BDs have a decent day. Hope it's warmer than here too. x

nadateturbe The new GD is due in 10 days. Our 2 GDs are looking forward to having a little cousin. Glad you've been sleeping better.

Wyllow3 Hope your back is a bit easier today. I've got 5 weeks to go on the steroids (had 8 weeks already). Don't overdo things and make yourself ill.

Hope all BDers had a decent sleep. I'm seeing my friend today, for lunch and coffee, at our favourite garden centre. x

Sweetpeasue Your feelings a re completely understandable - and this is just the place to share them. Fear of not knowing, and difficult decisions with so much uncertainty on outcomes them wears you down too. Just keep posting. Now, is this the last session with counsellor or have you got another group of sessions? I hope, the latter. glad there was a nice GP, the more you get to know the GP's the better I think in your situation so there is less reluctance to talk to them even if you cant get the best one.

HVDY you are certainly having a really rough time of it on those meds. How long it is now you have to stay on them?

Doodle I recall the run of dreadful nights you had, and am glad at least that has eased. But yes you would want to hear call outs.

Candy holding down a job and trying to keep the swimming up is hard work, but you are right to keep at it whenever possible. sounds like me trying to keep the basics up.

I took extra meds this afternoon to give my mind a break to sleep: twigged my back again but managed it better this time, I have to keep doing physio exercises but don't enough! But disappointed as its painful and unpredictable means fear and difficulty planning, but I think we all understand that here.

Best nights possible BD's

Last evening overdid it with the decluttering past art work when hit a very triggering bit downwards so trying to keep a better balance today.

You have never come across as unfriendly, EllieAnne. someone was being spiteful.
Like Doodle I have to make an effort to smile at times as I have frown marks. Its not actually frowning, its when I am doing one of my deep pondering sessions and thinking I always frown and its left its marks.

Candy just noticed your post. Yes, I knew you meant the App. Thanks.
I think some nights no matter what you try, sleep just doesn't come. And if you start thinking, you've no chance of nodding off again. It's worse of course if, like you, you have to get up for work next day.
I still think as HVDY says, you're fitter than most of us. I admire anyone who can actually make it to a swimming pool at 7am!

Sweetpeasue no need to apologise. I would be screaming and tearing my hair out by now. Good news about your urologist appointment. I have googled IC and it seems such an awful chronic condition to cope with, and they don't even know the cause, apparently. And being uncertain about the drug you are offered, and on top of that your knees. No wonder you're complaining. Giving you a big hug. Maybe you can ask the urologist about the side effects.
Doodle great that you're both having a better night's sleep. Makes such a difference. You made me laugh. Surely the busker would get the hint, if folk walk past with their hands over their ears. 🙂
HVDY the weeks of treatment seem to be going very slowly. And it's terrible having to suffer when you don't think they are working very well. I hope having the new baby to think about is distracting you. It's hard to stop buying baby clothes isn't it?
Have had a couple of good nights sleep, which is always welcome.
Hello to everyone on BD has a peaceful night.

Candy6 I'm following the dosage that the Neurologist told me to take (13 weeks altogether). I'd hoped to ask someone about it, but the Rheumotologist hasn't 'phoned. Apparently, I'm under the 2 consultants. Coming off these any quicker will exacerbate the side-effects, so I'll have to just put up with it. I think you sound really fit (far fitter than many of us on here).

SweetpeaSue Thanks. Not to worry, I now know that I'll refuse steroids if ever offered them again. I hope you have a decent night's sleep.

Just listening to Jordan Peterson on YouTube, then off to bed x

Evening all, I have an admission - I’m not as committed to swimming as I may have made out. I’m afraid I dibbed out this morning as my alarm went off at 6 and I though sod it! I didn’t sleep well last night. I seemed to be awake every hour. Not sure why.
HVDY you are having a bad time with those steroids. Is there any way you can come off any quicker at all? Especially as you’re having to put up with all the side effects with no benefit. My son in law sometimes has to take them for his rheumatoid arthritis but I don’t think he weans off very slowly? Maybe there are different types. I hope aqua made you feel a bit better.
Nadaterturbe just to clarify, I use the Calm app downloaded onto my phone not tablets. I had to use it a few times last night, just to try and distract. Which it did but not long after, I woke up again. I hope your day has been ok.
Sweetpeasue I hope your knees are better today. Must be so unnerving for you. My sister in law is waiting for a new knee. Very painful and on top of your other problems too. That drug does seem to have some serious side effects but I suppose it’s weighing them up against the quality of life. I’m so sorry you have such a difficult time and it’s quite natural for you to want to vent from time to time. We all went to help you and be here for you. I hope today has been ok for you.
Doodle you must be so relieved that DH no longer has those awful problems with disturbed sleep. I remember those days when you were getting no rest at all. You both must feel some benefit from that. Hope you enjoyed your little outing today. Shame you had to encounter that awful singer though 😡. As I said earlier, I think I’ve misled everyone. I’m really not that fit. I used to go to the gym quite a bit but am so time limited at the moment. I’m still,learning to swim properly and am finding that’s it’s a whole new ball game with regards to actual fitness. I can barely do a full length (20 m) without feeling exhausted. I’m sticking with it though as I really want to improve.

Love to Wyllow, Ellie Anne, Whiff, Nanny, Scaredycat. Apologies if I’ve missed anyone out. Hope you all have a restful night xx

HVDY I really feel for your situation. I didn't want to take the steroids at all when I realised the many side effects. It's not right to be left without any assessment of how this medication is working, though I think with the state NHS is in I think there will be many others. I'm so sorry for your predicament.

SweetpeaSue, Of course, you're worried. Anyone would be if they'd been through what you have. It might be an idea to write down everything you want to say, for when you see or speak to the GP.

Doodle I've been quite low, but have got another 5 weeks of these steroids. I certainly won't take them again, the side-effects have been worse than the condition. I don't see the Neurologist until October. The Rheumatologist was meant to have 'phone me 2 weeks ago but hasn't. I've bought babygrows, bibs, sleepsuits, dresses, blankets, all sorts - most in pink. After having 2 sons, I also bought lots of girly things for Son1's 2 girls. I'm glad your husband (you too) is having better nights now.

Hope all BDers have a restful night. x

Doodle Thankyou so much for your understanding post. I guess I'm worrying too much. Last time meniscus prob knee went had 6 weeks physio that made it so bad DH had to lift it extremely slowly onto bed as I couldn't move it myself at all.

Oh I should have said the good thing is that I rang reception of private hospital of 1st Urologist where I'm NHS patient, and Ive got appt with my first Urologist on Sat, so can ask him if he'll do the Diagnostic Distention as he'd agreed to before he sent me for 2nd opinion. So not all bad.
Glad I'm not the only one who takes things back.😂 I hate changing rooms. X

Wyllow sorry I’ve misled you. DH sleeps quite well these days it’s just that his balance is so bad he could fall over anytime. We have an en suite bathroom to our bedroom and if I slept in our other bedroom I would worry that I wouldn’t hear him if he called out.
Of course you’re ok to be as you are. I wonder how much of your fathers attitude to you has affected how you see yourself.
It is so easy to be knocked back by thoughtless comments by others.
Ellie Anne I have a face that doesn’t project a friendly aura which is why I try to smile at people a lot. That woman is not pleasant so why listen to her. Would you tell anyone they give off unfriendly vibes. No, it’s not the sort of thing decent people say to anyone. She is at fault not you. Don’t listen to her or let her get to you.
There must be some friendly slimming groups you could join. As for being judged, surely everyone there has the same goal to lose weight. I would hope the atmosphere is more one of encouragement than judgement.
Candy hope you had a nice break and work went well today. How often do you go swimming? It must be good for you.
nadateturbe I’m doing quite well with sleep now thanks. DH has/had restless leg syndrome which meant he was up at least once every night for months. He had to walk round to ease the cramp and tension in his legs. Fortunately, as a side effect from his recent iron transfusions the RLS has subsided considerably and he is now no longer gets up other than trips to the loo.
HVDY you sound quite down and I’m not surprised. The steroids don’t seem to be helping you at all. Have you bought any little clothes for the new baby? I loved buying stuff for my grandchildren. Not sure they were very practical though. Having two sons I went mad on pink when we had a girl in the family. 🤣 I’m glad you got put your aqua aerobics and I’m sure it did you good. How long till you see the consultant now? Is it about 4 weeks?

Sweetpeasue I have weak knees and after a walk the other day I had a real twinge in my right knee and it too felt like it was giving way. I’ve been very careful since. I know if you move slightly the wrong way it can cause knee problems. My younger son got up from playing on the floor with his son one day and his knee went from under him. He was in a big knee support splint for months. He damaged his cartilage.
I Hope yours is feeling a bit better today. Have you thought of a support bandage ?
Now you know you don’t have to apologise for your post. As I’ve said before, this is the one thread where you don’t have to pretend to feel better than you are. We’ve all been there for one reason or another. Perhaps we should all have a vent session. Wish we had a virtual room where we could all go and let rip.
You actually explain your problems so well on the thread. Your anxieties about treatment and procedures and your worries. I think the problem is that’s it’s such an emotional thing for you that you find it hard to be matter of fact about it when discussing it with the medical profession. Could you get an appointment with your GP or the nice one you mentioned and explain it to them exactly as you have here in your last post.
Not pathetic just suffering and worried x
Scaredycat hope the holiday is going well.
We went into town today to take back what I bought there last week 🤣. DH went to Specsavers for new glasses then a quick trip to Waitrose. There was a dreadful singer in town busking. He could play guitar ok but kept trying to sing songs his voice wasn’t suited for very loudly. People were walking past with their hands over their ears.

Oh I'm sorry for that depressing post. You've all got enough troubles. I'm ok. Just wanted to vent a bit.
Take care all.

* HVDY* Those are all horrible side effects there. It doesn't seem right that you have to keep taking them, especially when youve not had any improvement at all. I hope the aqua aerobics cheered you a little. Yes I have got a stick thanks. Went to supermarket today without it and felt terrified when knee felt it was going to go, as it did yesterday.
Nadateturbe Hope last night wasn't too bad. I believe I'm an introvert too.

I feel so low. What's strange about the knee situation is they were both completely ok then almost suddenly (over maybe a few dys) I woke up and they both were so stiff and really hurt to stand up and put weight on them. Left knee is one with meniscus prob from 5yrs ago and feels like will give way.
Swab test result not back but mess on my file saying 1st Urologist had asked this drug Elmiron be made available to me but GP has to get Urologist to send request to chemist as it's 'Red' label or something. I only asked Urologist about it--hadn't made my mind up about it. Looked it up again and so many common side effects not just hair loss which is main one. Serious stuff. Known to be a cause of macular degeneration and lawsuits in America because of it. Don't know what to think. Crossing fingers that the pain doesnt come back like it was early last week. I think Id take that drug if it did.

I feel so afraid of everything, I really need to speak to GP but wouldn't be able to until Friday. Ive spoken to a different one who's nice and he's on earlier. See counsellor for last follow up session Thurs. Not seen her for a month. I feel really pathetic as I just want everything to go away.

nadateturbe Not brave, just sick of being stuck at home . It was ok, thanks.

Hope all BDers have been ok today x

Candy just saw your post. 7am swim 😲, what a great start to the day. You must be very fit.
I will try Calms, thanks.

HVDY You are having an awful time with all these side effects. Very brave going to aqua aerobics, hope you enjoy.
EllieAnne I like a little company but basically am an introvert and very sensitive to how others perceive/treat me. Its OK to just be yourself.
I wish we were all told this when we were young. Sending hugs. x
Sweetpeasue it's so nice of you to think of everyone even though you were tired. And able to post such thoughtful comments.

SweetpeaSue Have you got a walking stick? It might give you a bit of stability just whilst your knee is bad.

Candy6 Glad you had a nice holiday. You have early starts! Hope today goes well for you.

I hadn't been on BD yesterday as felt so fed-up. The side-effects have been horrible - trembling, dizziness, feeling "spaced out", inability to get my legs moving (muscle weakness is one of the effects), nausea, headache. The rash (it's due to inflamed blood vessels) is no different to how it was in January. DH is going to drop me at aqua aerobics (still feel unable to drive) . Hope all BDers manage to have a decent day x

Whiff You've had such a lot of problems, ill health and loss in your life, and yet you've overcome them and give such caring advice on here. I so admire you. I hope you manage to get PIP. I can't see why you wouldn't. I get the lower rate for both parts of it.

nadateturbe I hope you slept better last night. My husband usually ends up in the spare room because of his terrible snoring.

Wyllow You sound very intelligent and clever. Your father wasn't very kind or supportive, by the sound of it. You certainly don't come across as snobby.

EllieAnne You're perhaps an introvert, nothing at all wrong with that. So am I. I'm disgusted with my weight, and can't seem to get back on this diet. I write down everything I eat. Counting calories might help you. That nasty woman at church is the one with the unfriendly vibes!

Doodle It must be hard for you to relax and sleep, when you've got to keep an eye on your husband. Could you have a little doze in the afternoon? It's not the same, but might help a bit.

ScaredyCat I hope your AF is a bit settled and that you have a lovely break away.

I realise that I often write to find out its OK to be as I am xxx