Blast from the past lol...

[Lisa6161]

Hi everyone, I used to use this site about 6/7 years ago. I'm not so bad, and coping with the lockdown ok. Looking forward to seeing if my old chums are still on here. Barnclown was one. If you recognise me, feel free to msg me.

[Horsewhisper]

Hello Lisa, welcome back, Barnclown is here. I joined a couple of years ago so might not know of the others who have been here much longer. Hope you are keeping well.

[Lisa6161 in reply to Horsewhisper]

Thanks, I'm not so bad despite it all. You're name is familiar, but it can't if you've only been on here a couple of years. Is purpletop still here? Anyway new friends are good too, and look forward to chatting with you all. Stay safe. Thanks for your reply.

[Barnclown in reply to Lisa6161]

😍 Glad you’re back, lisa! we’re in touch so I know Purpletop is doing as ok as we can 😉, but she only drops in here once in a long while. I’m also doing as ok as we can, but the past 6/7 years of True Detective medics sorting out my 🦓ness have uncovered a lot of 😈s which are ALL responding pos to ALL treatments, so could be a lot worse 😉, but early onset 🦓ness + this collection of primaries going unmedicated for decades = I’m not managing to be active here any longer...but you can’t keep me away! I do post now & then + check in to see whassup most days...and am looking forward to your contributions ❤️🍀 Coco

[Lisa6161 in reply to Barnclown]

Hi CoCo, glad you remember me too. Well I'm ok but have had several ops, due to lupus related rheumatoid. ( rhupus!!!) I recall talking with you about mortons neuroma and my toes separating. I had surgery 1 yr ago for weils osteotomy. My metatarsals needed shortening, so not mortons after all. 9 weeks ago, I had cervical spinal op on 3 levels. ACDF. I'm over that now, but these ops are rheumatoid diagnosis. I need more ops, but I'm finding that my lupus, is pretty much ok. I now suffer with the effects and meds, this disease has caused. My liver is also a problem now, and that's because of meds. So still busy with the NHS, but actually could be worse. Lovely to chat again. Take care. X

[Barnclown in reply to Lisa6161]

🤷🏼‍♀️ Oh Gosh: what a life we lead...am resisting trying to share a summary of my version of similar (But have posted here recently, inc quite a lot of detail on this) Except to say: had instrumented L4/5 fusion last June & am still recovering (all my consultants say such a long recovery is ‘normal’ for folk like us)...so, am V MUCH relating to what you’re explaining...I forget your age, but being over 60 makes everything even more of a party 🥳 ❤️🍀

[Lisa6161 in reply to Barnclown]

I'm 58 so too close for comfort lol... I will try and find your posts and have a catch up. I always thought you were the exception rather than the rule!!!! I'm sorry you are still an enigma!!! Hope you remember my sense of humour btw. Main thing is, we are still here and fighting. Stay safe x

[Barnclown in reply to Lisa6161]

😆👍...🥳 HURRAH: am no longer an enigma..my True Detectives have finally come up with sound convincing diagnoses of my 4 early onset primaries + the most relevant genetic & environmental factors = adequate explanation for all my secondaries etc etc. GLAD have hung on in here long enough to feel the JOY of a personal narrative that SATISFIES, ie stands the test of time + hits the spot ALL previous hypothetical narratives couldn’t 🤷🏼‍♀️... and 🗝 to coming to terms with it ALL is: a health Funny Bone 🤡, so it’s GREAT you’re back 👏👏👏👏🥰

[minka in reply to Barnclown]

Barnclown it's John how are you doing ok? I'm in the wars again after 6 years of being ok

[Barnclown in reply to minka]

good to ‘see’ you again, John….but am wishing things weren’t bad…glad you’re here now though: this community is even better than ever. I’m as ok as an old girl can be, especially with infant onset lupus + hEDS & Antibody Deficiency Disease. But am with a lot of really good consultants for everything long term, so feeling lucky despite all the increased disability etc 🤷🏼‍♀️

[minka in reply to Barnclown]

lovely to here from you again we talked loads last time and u helped me a lot through through this thing im off out at moment but i will post a good one again tomorrow. you wont believe what happened

i totally cleared up for 6 years with no meds fit as a fiddle i was then wam bam GAME OVER.

[Barnclown in reply to minka]

great to have those 6 years…🤞 you can turn this around & have even more good years 8n a row!🤞💞…I remember you & motorbikes, yes? You’ve changed your photo…I think you had a bike in it?

[minka in reply to Barnclown]

hi barnclown its realy great to here from you although i wish you where not on here and you where all fixt up and cooking on gas so to speak.

well where the heck do i start with this one so i will start t the beginning. i started to get some pain in the left right groin riding the bike and a slightly swollen testicular. it was sore. went to the clasic tt on the bike in the isle of man and i didn't feel like going. going over bumps hurt the groin. so i stayed on flatter roads. Walking around was ok at home i usually do 2.5 miles a week to keep in shape since the knee microfracture done (look it up) pulled that back best leg i ever had could walk for miles never better since 1991 when it went.

when on hols Spain seemed to be getting better. Came home pain in right side on my walks did a mile came home hurt near kidneys. had a rest on bed and something to me foot to me back jumped out oh what pain that was. I f that's what having a baby is like in pain forget it. lol

Wife calls ambulance in wigan and sent home next day with pills even though could not put my foot down. Ankle not swelled but was hurting, tried walking it killed my foot started off underneath feet and really sore. hand lumps started to flair up. and knee started to twist again. i thought oh no this is the bleeding thing coming back but not like it usually does. its my immune system again. i should have known cos on holiday i got really tired out at night just wanted to go back on bed in hotel at 9pm and wife said i don't look to good.

YES I NEVER TOOK HER ON!! AND DISMISSED IT WITH I AM FIT AS A FIDDLE IVE JUST WALKED TORAMALINOS COSTAL ROAD TO BELAMADNIA,

I booked an appointment private with rumi doctor for 250 quid in that much inflammation. He told me seen you before john you have a couple of things going on 1/ you have multiple enthesis. and 2/ this gold be also an abutment in your back although your mri showes no difference to 6 years ago.

Now at phisio who are taking no notice of knee twisting want to give me orthotics again if got them in now. legs and ankle are not stable but i can get a mile then im beat fit aching feet sore toes swelled at ends and a bone like on my better leg through compensatin and groin ache, its a nightmare again.

I would just love a 3 mile walk again. but i should have known when thinks started to make me feel a bit run down.

ps this is the shorten version. but how are you these days.

[minka in reply to minka]

i was trying to send a bike picture and something else popped up and now cant find or delete it don't know what the hell it was popped up sorry

[Barnclown in reply to minka]

🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️that adds up to one GINORMOUS mega bummer! Thanks for explaining….phew: glad your wife is keeping an eye in you…& that rheumy remembered you. & yes, we all do/can miss stuff cause we feel ‘more well’ which makes sorta ignoring or underestimating signs of trouble head possible…I’ve learned lesson after lesson due to that way of being, but I never seem to stop getting this right 🙄

Am as ok as I can be considering my version of all this was infant onset & am 70 this autumn + went inadequately medicated till about 10 years ago. But after 40 years being messed around by the health system I got in with a really good set of consultants in all the depts I need & really I am getting the best care imaginable. But am in my 6th year off food altogether surviving on gastroenterology’s lab synthesised predigested Elemental Diet, with ileostomy looming…2019 spine surgery failed making my scoliosis even more severe so I lurch about like julie Walters in Victoria Wood’s ‘2 Soups’ sketch & my severe Raynaud’s feet have dreadful ischemia reperfusion injury so are simultaneous frozen & burning like hot coals + flippin numb - but rheumy figured that out & put me on long term high dose scleroderma protocol viagra which amuses my other half no end, but it does help just enough to stop me scream8ng 24/7/12 😵‍💫.

🤷🏼‍♀️So I guess my biggest hassles are mouth to exit,GI tract , feet, spine…but if I were REALLY brave, I’d dare say the AIDs are reasonably well medicated & stable so long as I don’t get an infection or fall over & break something (am on 2 sticks now)…& we’re lucky to live in beautiful countryside which cheers me up, as does encountering pals like you again

Am too frail now to be active here, but it feels good to catch up with what’s up at your end, & how could I not fill you in a bit re my end, seeing as you’ve been so kind as to ask

Take care, buddy…wishing you every best wish 💞 with a wave to your wide🤩

[minka in reply to Barnclown]

your funny victoria woods .Im 72 now which people keep telling me is getting on .But i say just because their is snow on the roof doesn't mean fire has gone out. its raining here and i so much wanted to do a 2 mile walk even though im climbing the wall with the sore feet and ankle and knee. how the heck i have got like this and don't know which way to turn regards what the heck is the problem. is it the hip is it the back is it the leg. we went on a barge trip down the canal and i think i sent it down when i stepped of the boat. didn't seem right. but all this other stuff going on its not all a knee and and ankle i feel. i keep running a tennis ball under my foot to help with that a bit. oh and we went all the way through a pandemic and 4 week ago i got covid that didn't help i felt like i was 90 trying to get down stairs. im trying to decide whether to go see private rumi again or what to do cos i am not getting much out of the nhs. did a picture come through on a reply that where the heck that came trough from i don't know?

[Barnclown in reply to minka]

yes, a picture did come through…& I get it all, as much as another can…my feeling is: put all this vivid & ‘awful to live’ detail in a new post of your own here..we need experienced guys like you speaking up..there are more guys on here now than there used to be & I’m SO GLAD…I wish I could be more helpful, but am afraid have not much more to offer up except best wishes 🤩👏👏👏👏

[Krazykat26]

Hi Lisa 🤗

We haven't met before as I joined a couple of years ago too..but welcome back!! 💐🌈😽😽Xx

[Lisa6161]

Thanks KrazyKat.