Old Style Ways and Poor Health part 2.

3secondmemory

Not sure what is happening. I went for my endoscopy this morning but my surgeon cancelled it after examining me. He’s ordered some other tests and has assured me I’ll be seen within a fortnight. 

MingVase

Are you all ok ladies? It's bad when you go quiet. When my youngest went quiet it was always trouble. Like the time he (quietly) stuffed almost an ounce of wool up his nose..

pollyanna_26

MingVase said:

Are you all ok ladies? It's bad when you go quiet. When my youngest went quiet it was always trouble. Like the time he (quietly) stuffed almost an ounce of wool up his nose..

Well Mar as you know things have been up and down. Lots of times unable to use the internet combined with laptop failures have been a challenge when you can't look anything up or send or reply to messages and emails.

I'm hoping posting here tomorrow will go ok.

Apologies to WCS who asked about MTX and Flares. Just mum and the box of tricks and 3second memory who I invited to join us then went Awol Your son sounds like my middle dd Mar. I managed to remove a lot of random things but we had some interesting trips to A&E in the early years

pollyx

MingVase

He also managed to swallow nail varnish. Blue nail varnish. He looked very interesting.. blue round the gills.

3secondmemory

Hi Polly. My morning didn’t start great but as soon as it was light, I managed to get out in the garden and did a surprising amount of tidying up. 

I had another psychological assessment to check that my memory is not getting worse – it’s not, 😅 

It’s been such a battle because I’d been thinking that things weren’t right for a long time, but memory problems in women of a certain age with fibro are easily dismissed. 

Anyway, I can look forward to a SPECT scan in 2021, A trip to the urologist and a trip to the haematologist (legacy of MXT - whilst it was really effective, my white blood cell count has never recovered and I have chronic neutropenia) 

my plan for the rest of the day is to empty the bottom of the wash bin of all the delicates I haven’t got round to handwashing. Apparently the corner shop is open so I will go and get some milk and if it stays this bright this afternoon, go for a walk. I’ve been feeding the squirrels and now they come without fail 😃

Hope your day is enjoyable 

pollyanna_26

3secondmemory said:

Hi Polly. My morning didn’t start great but as soon as it was light, I managed to get out in the garden and did a surprising amount of tidying up. 

I had another psychological assessment to check that my memory is not getting worse – it’s not, 😅 

It’s been such a battle because I’d been thinking that things weren’t right for a long time, but memory problems in women of a certain age with fibro are easily dismissed. 

Anyway, I can look forward to a SPECT scan in 2021, A trip to the urologist and a trip to the haematologist (legacy of MXT - whilst it was really effective, my white blood cell count has never recovered and I have chronic neutropenia) 

my plan for the rest of the day is to empty the bottom of the wash bin of all the delicates I haven’t got round to handwashing. Apparently the corner shop is open so I will go and get some milk and if it stays this bright this afternoon, go for a walk. I’ve been feeding the squirrels and now they come without fail 😃

Hope your day is enjoyable 

I think I first came across a post from you during a discussion on the wonders of cheese! I'd noticed a mention of fibro elsewhere and then noticed how upset you were re appointments in the present pandemic.

I invited you here and then temporary laptop no 2 failed. Now posting on no 3 so fingers crossed I'll stay online until the family techie decides which of the two new laptops I'd prefer would be suitable if either.

I had to google chronic Neutropenia. Not something I'd heard of . I just saw your original mention of fibro.

Reading your post today I can agree thaat memory problems in women of a certain age are often dismissed and Fibro isn't diagnosed . Both myself at an age when everything was put down to hormones etc and my dd then in her 20s were lucky to have a world expert in the condition in our NHS trust who did the points test, checked a few other things and diagnosis done. Mine was some years before my dd but it led to her being diagnosed and we share three different conditions. I know many who do have fibro but haven't managed to get diagnosed and get helpful meds.

I must say you put me to shame! Having a home alone at Christmas day I haven't done the tree , have a few festive bits and cards but that's it. As I'm limiting going out I didn't do my normal stocking up on Christmas treats. I'm having my favourite casserole of lamb leg steaks from the freezer,,carrots and onion with parsley dumplings . Quick to prepare and looks after itself.

We had fog and then very heavy frost overnight , some sun now but no real warmth.

Youngest and I were emailing earlier. She is planning to wear a dress and make an effort with make up after mainly pjs this year. Just her , boyfriend and the cats.

You have reminded me I need to do a wool wash. The warm jumpers have been a blessing . I keep finding random stuff I thought I'd run out of . Latest is an unused bottle of Eucalan wool wash which keeps machine washed woollens in good condition. One of the odd things about fibro fog is sudden surprises.

I hope you enjoy your walk if you do get out. I've been watching the garden birds taking on the sea birds in the back garden . Always funny to watch and the little ones usually win.

pollyx

MingVase

I've had ME for 20 years and now diagnosed with fibro - never had as much as an asprin off the GP for either condition. Just get told "self-help is all we can do here". Pretty disgusted with them.

pollyanna_26

MingVase said:

I've had ME for 20 years and now diagnosed with fibro - never had as much as an asprin off the GP for either condition. Just get told "self-help is all we can do here". Pretty disgusted with them.

Mar I know I've mentioned this before and the current virus situation wont help but what your GP has said is unacceptable. I refused the medication for both forms of arthritis and fibro and lived to regret it. I couldn't have supported youngest while adjusting to the medication she takes.She's half my age but is showing far less joint damage re Arthritis and her Fibro is generallly more manageable.

Part was a good doctor and effective medication . The original pain clinic was where she met a very good Dr who's an expert in pain and fought the Senior consultant - rather like your heifer and history now who insisted she needed to forget 2 pain meds and make an effort!

Well she stayed on the meds, Superdoc referred her locally . Pain clinic apart from the Pain expert and a wonderfiul Pain Psych couldn't offer much more although she kept attending for a while. When Superdoc referred her to the new Centre od Health and Wellbeing she was reunited with the pain psych and had some really good therapy with her at our local hospital and is free to go back if needed. Thhe young physio guy was amazing. Very gentle and not pushy . He printed off all the exercises and advice and when she felt ready yo end the visits he issued an open invitation to come back if needed. She's kept up the exercises over the last few years sometimes a few often more. Having everything on paper including her sessions with the lovely counsellor Superdoc brought in to surgery has helped her so much and I believe she's handled this year far better than she , I or Superdoc expected.

I know we've discussed your old style GP in the past. I honestly would be asking around now you've moved house about doctors in the area. In your situation our GP would have found an alternative to the Heifer and found you the right meds and support for the fibro, If it's the hospital that are saying they can't help there are alternatives. The awful consultant who concentrated on the Psoriatic Arthritis was appalling. Accused dd of fakng fibro not making an effort etc. That was the last day we went there. Dd left the room in tears and pain after having her arm twisted up her back and called a liar. Consultant "She'll be sitting in the coffee shop , do bring her to have a word with me" Me "She'll be heading for the way out" mad rush with a junior consultant , a nurse and myself and dd hidden outside in floods of tears.

Life's short Mar. You have the Addisons to cope with and the RV to care for after his surgery. See if there is a decent GP practice to move to. Use local knowledge as you did when looking for someone to decorate when you moved in. When there are a number of things such as CFS /ME I had it called both over the years in with other conditions it needs joined up decent care.

I remember reading what seemed a very basic, simple book years ago which mentioned conditions that were normally seen alongside arthritis etc. It's making a lot of sense these days. Many with ME/CFS have been dismissed. I was and i seem to remember you saying you couldn't prove ME to claim disability benefit.

Sorry for such a long post but it is never acceptable to be dismissed in such a fashion.

pollyx

MingVase

There's only one health centre here who takes our postcode Polly so I'll sign up there as soon as the virus has died down a wee bit. Not heard great things about them though so not getting hopes up. Sorry to moan on Christmas day! just in a bad spell, will lift in time. I am taking loads of vitamins and got a herbalist giving me a vile dark brown mix in a huge bottle, I think that helps a bit

pollyanna_26

No need to say sorry. You aren't moanig  you've just had enough messing about one way and another with health in recent years. We are lucky both GPs since the late 70s have been brilliant. One suceeding the previous one at retirement. I doubt think there are many like that.

Never had any problem with either Dr but managed to train a few receptionists over the years! It's important not to form a judgement based on other peoples bad views. I've known people post bad online reviews on our dr but still turn up although there are a number of other practices in the area taking on new patients.

The thing about Superdoc is he's a good Dr full of empathy and does his job well. However he wont be fooled by chancers or fakers which doesn't appeal to those swinging the lead.Good on you taking the vitamins . Dd is really good with that but I forget from time to time. I need to do better.

I wonder what's in that huge bottle. I've had some effective. herbal things over the years and miss Quiet Life tablets very much since they were withdrawn. I've noticed some online but not from Lanes. I have a feeling there was something in them. Never affected me but I wouldn't buy from any other source.

3 Second memory I wrote a long reply and managed to send it off into the ether. I'll try tomorrow. Fingers are shot and the brain is muddled. I hope your  day has been ok. Lovely to read you have squirrels nearby. We have red squirrels a few miles down the coast . They are one of the reasons I've been furious everytime this long coastline has been invaded by the hordes . Rare and protected flora and fauna wiped out by woodland and beach fires, disposable bbqs and drunken idiots travelling miles to do their thing even during lockdown and send us up a tier in the process while overworking the lifeboats, air sea rescue and police ambulance fire services plus local health care.

pollyx