Following on from my posts here over recent months:
a HUGE thank you to ALL who have helped me GREATLY to process/interpret my flaring symptoms while my medics & I systematically took a 1 step @ a time approach to the typically complex chronic multisystem gastro + gyn + urology
+ rheumatology problem we've been getting our heads around since early October:
you are ANGELS & WIZARDS & my HEROS🌟🌟🌟🌟I cannot thank you enough 🤗😉
that NHS specialist gyn/urology/gastro physio appt this afternoon went brilliantly: she is the stuff of dreams: EXACTLY what's needed, AND I know we can work together...a highly experienced young woman with incrediblly good communication & listening skills! And a great local NHS networker: she can connect me with the right NHS gyn & gastro consultants...I have homework to do, and then I see this physio again in 3+ weeks....and several more appts will follow: she is in for the long term. She also seems to have a very human heart...these were vvvv intimate subjects under discussion
I see the lady urology surgeon who referred me to this MAGICAL physio next month...I may just let myself hug her...
I am in a state of shock: how can I be this lucky...after such a lifetime of truly madly deeply dodgy luck? There is a lot of rehab to be done, but she says that if I can maintain the other multisystem rehab regimes I've been running successfully for years now (eyes, mouth, nose, spine, legs/feet, gyn, uro, etc etc) then I can do this specialist rehab. Well, time will tell...but this feels like a good beginning
And: HURRAH: the layman's diagnosis you've helped me to piece together seems to be spot on (sjogrens + SLE + EDH affecting viscera & peritoneum, + Rectocele & Cystocele).
+ AH HA: there appears to be at least one wild card (a condition in my small intestine I'd never heard of: more about that another time)
Enough for now...just to let you know a bit...just to say THANKS....😘🍀
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Thanks effie: couldn't have got this far without you, buddy...will fill you in with more details ASAP...could maybe be useful re your complex abdo thing 😘🍀
So glad to hear that you at last seem to be getting somewhere Coco and have found someone in the NHS with true empathy and understanding who genuinely seems to want to help you with these issues and not just brush them under the carpet. You sound pretty ecstatic and I hope you can now move forward and get these symptoms sorted out or at the very least eased xxxx
Ecstatic is THE word for how I feel, sjogibear👌👌: but I do tend to over excitement at the least excuse....well, this is a positive breakthrough...these abdo problems are of looooooong standing going back 30 years to my early 30s & worsening over the decades despite all efforts to minimise them...while consultants & gps blanked my every mention of them...until NOW they've finally got this severe...so why not celebrate it right away...who knows what might happen next: we've got to seize the day, no? And 'at the very least eased' are also the right words! Thanks...am wishing you all the best 😘🍀
So delighted for you Coco - you have so much positivity and enthusiasm that it's infectious.
You are big in my thoughts actually because I've just sanded and painted with undercoat the only remotely acceptable walking stick in the whole of St Andrews that I could find.
It's going to be shiny cappuccino coloured and bedecked with pearly buttons. I was so shocked that there were no walking sticks at all in any of the six charity shops that I thought I might even start a sideline customising walking sticks for the discerning cane user. They could be called Coco's after the woman who inspires us all do much? 👍🏽👌🏻🎉🎨🙃 Xxxx
OMG: may I buy one of your customised walking sticks? SO EXCITING: BRILLIANT IDEA 🌟🌟🌟🌟🌟🌟🌟🌟🌟 I CANNOT WAIT TO SEE PICS
Thanks so much for YOUR enthusiasm....it means all the more because I know how deep you have to reach to tap your enthusiasm while you're going through your prolonged ordeal seeking convincing diagnosis & effective treatment....you're like a modern day Ulysses, I think. & just as scores of people have identified with Ulysses over the centuries, so I identify with you...as you know, my diagnosis & treatment ordeal has also monopolised my life..involving decades of disappointment that almost sucked me under to extinguish me...but finally these past 5-6 years have meant all that makes a kind of twisted sense...I'm not sure what to make of the concept of karma: must there be a big personal lesson in all that? ...well, it is what it is
Hi! Twitchtoes! I shall attempt to insert a pic of assorted canes and crutches I possess ( 😚 ) as I wonder if they are available on line? ' Switch Sticks' is the brand. Our Mobility Store stocks them so I'm a frequent peruser 😆. You can colour code according to your couture de jour 😂.
Hi Penelope-Mary - Thanks will google your Switch Sticks with much interest but am now minded to make my own wooden canes and embellish or distress them bevause today's efforts worked out rather well!
BC when and if they become a proper bespoke sideline yours will, of course, be a gift rather than a purchase! Xx
Thanks eeyore: your encouragement is especially meaningful + welcome because I'm 1 of your greatest fans...seeing as I've always felt like a cross between eeyore & tigger....wishing you every ounce of good fortune 🍀😘
Again, I don't know how you can have all these going on and still be sane, I've been struggling with one pesky issue in the past few weeks that put me in hospital several times and I'm ready to give up.
You are an inspiration, well done for persevering In the face of such complexity and adversity.
I'll whisper this...although it's not really a secret: I'm not sane: I'm only mainly "functional"...I have to work every minute of every day at CBT & mindfulness techniques,..it's become second nature, after a dreadful patch in the mid-late 1990s in my late 40s when I was close to surrender. My hero husband & my closest oldest friend saved me. She is 20 years older & had hit the same point in her 40s..it was terrible to see... I was there for her, as she was later for me...just as we are here for one another
So, I know how that bad depression feels, and I know we can survive ....and every day here on forum I am inspired by all of you, who are enduring greater & more severely protracted trials than I feel I've ever experienced. You've taught me so much about how to claw my health back PT...without the highly informed & brilliantly argued way you pressed me into trying pred & myco, my birth-defected-DES-daughter-reluctance to take ANY pharmaceuticals could well have prevented me discovering that I can now feel better in my 60s than I have since my 20s...and if I hadn't discovered the benefits of these meds, I doubt I could be embarking on this crucial new phase of extra challenging advanced rehab now
am on the edge of my seat here, looking forward to your next update...knowing you're going through an especially challenging time right now...and feeling total confidence you'll succeed😉
Hi Barnclown just read your good news.I am delighted you finally found answers and help from a very caring doctor.You deserve this as you are always helping everybody with their problems hope you get sorted and best of luck to you. Xxx
Oh circles: you are so dear: I do my best...and every time I'm replying here, I know deep inside that i'm talking to myself as much as to you guys...our life here on forum is essentially one of solidarity: we are MUCH MUCH stronger & more effective together🤗🍀😘
I couldn't be having this MOMENT (THE operative word) without YOU, cutty: your depth of experience with abdo stuff + your generosity & encouragement have kept me 'at' this...when I truly was lagging...thanks so much...am wishing you a similar jackpot SOON...it can't be long off now, hang in there, my friend 🍀😘
Means the world to have this from you, dear misty! 👏👏👏👏 Your friendship & coaching over the years, and especially over the past 5 months of grappling with my abdo saga, have been KEY to this...Of course I know this is just one more breakthrough along my way...and improving my condition will take concerted effort...but I do feel as if this breakthrough deserves special acknowledgement: I really had grown so accustomed to these troublesome & debilitating chronic symptoms: that's not a good idea when medicine is progressing with developments at hand for older patients like me...if this new physio joins my medical team, & if we all can play this right, I could be here 20 years on to see the 20,000 little trees badger has planted here finally making up an independent little wood...capable of standing on their own....thanks so much for your kind words...wishing you all the very best 🍀😘
Your success is all down to you. I bet the Physio was really impressed with your notes , diagrams and grasp of such a complicated medical history!. She won't have seen many patients like you and you know they're much more likely to want to help patients who want to help themselves. Onwards and upwards to see those beautiful trees as a proper wood. TAKE CARE. X
Excellent news. More than well deserving for your endless battle and support for us all. Proof that help is there.x
You're so right: help is there..seems we need to hunker down and just keep trying! And I guess we do best to try to gear our hopes & expectations reasonably...without damping down the desire that fuels our drive towards improvements. It's a tough balancing act. And this forum helps me every day to get the balance as right as poss
this morning I had to drive badger to his garage so he could collect his mini after a repair...so I kinda had him "hostage" and could 'share' a bit more detail re that appt yesterday...poor husbands: well, he listened like a man! When I got to the bit re the physio's thoughts on my small intestine he said: that's exactly what we crohns patients have! I felt mortified: been caring for badger 32 years...his crohns was severe even before we met...somehow I'd never properly understood this aspect of his crohns...despite trying hard to understand, despite plenty of time listening to him tell me about his crohns, despite reading his crohns & colitis assoc magazines etc, all these decades..well that really taught me just how hard it can be to understand another's illness. Anyway, as a result, we had a good chat about this small intestine thing...and I think I better understand what the physio was explaining...and i better understand what badger copes with day to day...one thing is for sure: the life of having multisystem immune dysfunction is one long education!
Thanks so much johare: am so glad you're here 🍀😘
Too true. Many years nursing taught me that no matter how hard I tried to understand others conditions, until you live it you can't. Doctors, nurses, loved ones are no exception. Pain is personal not on a scale. Tiredness can not be measured. But here we are closer to feeling others emotional, physical trials. X
Wonderful news Coco Barnclown! Good doctors are out there and patients who need their expertise can be recognised. You've had such a long and rocky road, it is indeed happy news for your friends here to read.
Yay! Let's get you 'better'! You do so deserve it!
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Thank you.......
PS To my saga re having a referral to Man Royal Infirmary to Lupus specialist?
Need help and advice please
