Sticky Blood-Hughes Syndrome Support
8,080 members8,320 posts

I'm back all ( in body anyways }

I have a temporary place to live now -- i have my dog Casey - i was out of my home with Mary on the 17 th of this month -- it was hard -everything was a memory, a thought -a laugh. my blood has been REAL bad 2.4 on mondays test then 7.9 on thursdays test-- emotional state not good --aaaaaaaaaaaaaaALL my doc's have me under a microscope- i see a social service worker for my mental well being. on strong morphine patghes on my back i have to have changed every 7 days --they also have me on 2 more pain killers that are in pill form i take those 3 times a day-- and yes along with all my other pills -- i have a new Doc for a eheumy and i fired my pcp -i had a major blow out with him and pretty much told him in no uncertain terms just what i thought of his screw ups and mis-diagnossises. i also took him in front of the chief doc for the entire hospital. i am still waiting on some info on what to expect next . but you know with what i have been thru the last 2 monthsi could give a s---- less. i have no home phone so for those of you i was calling i still don't know when that will be.i take things one day at a time now. thank god for Jess i would most likley be dead now had it not been for her. any thanks should go to her. going to my doc's appts with me as i couldn't speak for myself-just to mentally screwed up and scatter brained to remember or retain anything.been trying to E sheena but no sucess.and nothing from suez. hope the rest of you will get back - have missed you all. my SS worker wants me back to you guys asap. she is very worried about me also -- i just got back on line last night at 9:00 my time...-------------------------------------- thanks your brain cramped friend ---- jet .

18 Replies

Hi Jet - Really sorry to hear about all your problems but so proud of you that you are hanging in there and just taking one step at a time - one day at a time. Thats all you can do and all anyone expects you to do. You know Ive been where you are and you never think things will improve but they do.

Hang on tight my friend, give Casey a big hug and take him/her for a little walk, it will do you both good and it will make you feel better if you can do that every day. Find somewhere where you can sit while he/she has a little run and sit about so you can clear your head and escape for awhile. It helps.

let us know how you are doing...thinking of you xx


Glad you're back hon, you've been missed, your sense of humour, strength and general ability to smile in the face of adversity brightens my day. As APsnotfab says proud of you flipper, from your half flippered friend hugs xxxxx :-) :-) :-)


your warmth brings tears of joy to Casey's eyes. HE is a remarkable dog . i am having him certified as a therapy dog and also a public acess dog which means i can take him EVERY where with me --no exceptions -- he only has to pass a test that he already passed by another trainer. he is smarter than most humans i know -- and yes including myself- he can sence a flare when i have them- and there has been to many in the last 2 months- i am on to many drugs and patches right now -- all the doc 's are watching me real close - i have them all worried . blood very bad -- mental state - well not good-- back has been trash. on morphine patches so i could continue to move out. can't remember when my memory was so bad???????????????????????????!!!!!!!!!!!!!!! -- Jess has been going to my appt's with me i'm so bad . i don't think i would still be here if she wasn't with me . no joke there. i have had alot of support and i needed every it of it . it warms my heart and head that i am able to get back to you all . it's been a long hard road and it is far from over ,, APS i take Casey with me every where -- even the mens room HA HA HA . i walk him alot - good advise---can't wait till i get my phone back so we can chat.. next big think i will have to deal with. getting my own place in this thing that is my life. god bless you ------- me and casey


Well done for pulling through and well done to Jess for helping you. Keep going and stay strong. Thinking of you.

Reply praying for you and its good to hear how you are doing. Im happy for you that you have Jess to help you, and Casey sounds like a special dog. God bless all of you take care...Teresa


So pleased to hear from you and that you have somewhere to stay even if it is temporary.

I am pleased that Casey is with you. I don't know what I would do without my dogs. My dobermann, Hortense, always knows when I am going to have a flair and will start itching 3 days before. I call her 'The Grim Reaper'!

Hoping that things are going to get better for you, from now.

When things get really bad I recall the words of Basil Fawlty 'I remember Happy'!

Thinking of you and Casey Love Sue


Hi jetjetjet,

I sent you a message the 1 of June and asked you to fight.

I can see that you have done a lot since last time. Keep on going! I will be thinking of you.

I wish you the best in your difficult situation.

Love from Stockholm and Kerstin


thank you i will try to E you on here and let you know whats going on . i just got this comp working yesterday ???? i am in bettween appt's right now-- let me know the time difference i am in N.H. U.S.A. - i know it's 5 hrs. from here to England.. i will fill you in on alot more-- thank you again ------------------------- wacky Jet---------- :-)


Good morning SLUDGE BLOOD WORLD.. well after my appointments yesterday i can ee i am no closer to my PCP problem than i was the last couple of weeks ???? O well at least i got rid of the last no mind !!!!! They at my next appointment called for a urine test , having some trouble , not passing the test ( the only test i can pass !!!!! ] it.s to find out if my meds may be the cause of the problem as with me it takes 4 to 6 or so weeks to see if i will be ok with a new med - problem is i M ON 3 NEW ONES NOW SINCE MY MELT DOWN so i am not sure how they will pick the culprit. sleeping a bit better now 4 to 5 hours a night a couple nights a week, thats lots better than earlier.- well all need my morning coffee [ my eye opener-- or at least one ] HA HA HA ---------------------- have a great day all ---- wacky, skinny [ to date i have lost 22 pounds and not the healthy way ] jet


Glad to hear your back online....x


Thanks Sharon--- been a long road -- lots of road blocks -not having the comp. was not good as all my med. records are in there , i had paper copies BUT- the last push to get out of my home of all those years- got put in like boxes , un-marked and ended up in different locations ??????????????? so this needless to say is a huge help and a strain off me as i have new Doc's and because i have4 seperate hospitals i deal with comunication is BAD at best. Buuuuuuuuuuuuuuuuut Thanks for your kind words ,you guys are so important to my mental well being.i need all the help i can muster !! having Jess- my sister Betty - Barb -- these 3 have been heaven sent .. will talk later--- are you in England ?? with the 5 hour time difference!!!! i sometimes forget -- the messages are there when you wake -unless you are a late person -- anyways bear with me --:-) wacky - confused- skinny - but stable ?? -- jet


Hi here :)

I have left message on here wen possible? :( U had sent you an email too?? Just figured yoy would get back to me when you could :)

So sorry about all your news & problems with so called docs, missed you friend.....hope to catch up again soon?! I still dont have landline & ex almost made me lose my mind even more than normal! Can I still contact you through private messages on facebook until phone problem sorted? Might be easiest way?

Keep strong, well & smiling when possible bud, speak to you soon x


Hi -- i hear that you have a glow and a skip to your gate !!!! great - you sparkle -and beam -- you can still us my private e mail as always -- just no land line phone till i get a permanent place and i don't know when that will be . God it's great to hear from you -- it made my day. did you happen to get the attempt i made at a home video !!!!! - i think we sent it to Sheena -- you will get a kick out of that - great shots of my feet Ha Ha and some footage of some people . i can try to send it to you. you won't believe this but i had just wrote down your e mail and left for 15 minutes and came back and there was your message .. Mary was watching over me she knows how long i have been waiting for this day that i would be able to write youi !!!!!!- THANKS MARY --------------- gotta go so now don't be a stranger - i need you more than ever now my friend. put on those high fasion BOOTS and strut. missed you -- gotta go for BBN jet -- i feel the love


I'll have to check my emails, sounds like I need to see this video!!

Even tho' I have a sparkle back I am still struggling at times...but hey I'll be ok, just need some time to heal some scars :)

I have bought a 2nd pair of kicking my arse boots so I will be strutting well again soon.....I wont be a stranger, missed your banter bud & our chats, keep ok & I will take a look at my messages now I actually have 2 mins!!

I am burning myself out as quite run down at mo.....trying to keep sane as well as keep everyone happy, do my photography & website etc to try to keep head above water with the bills! its lovely they all want my time...but I'm not having any for me & I'm finding it exhausting & can never say no!

But seriously I will not be a stranger anymore....I'm trying to find time to be back with my Hughie friends & support others as before, so big hug bing sent to you, keep strong & we'll speak soon x


hay - honey bun !!! i just got my info to work . my problem is -isthat i no longer have a home and i am trying to work this thing under a router that is here with my friends. { as if i know what i am doing anyways -- i tried to E you under your old address???? lets hope That worked. i am having a coctail for all of us !?!?-------------Sheena i think has my poor attempt at a video ???start there--sorry i had to put my fingers down for a short slurp !!!!!!- now i am back-finger wise anyways-- Ha ha ha get back to me on our private E 'S---- keep struting girl --- i would buy the post card.. so long as it isn't to costly HA HA HA . no kidding, i would take out a SMALL LOAN IF NEED BE. -- just kidding . god i have missed you. you and our Sheena are the only ones that i have had the honor and privalige to have actually talk with in person, sorta - kinda -speak?????? be fun -be happy - be safe --- just be you---- the world is so much better with you in it !!! ---- me


Lol.... I have another friend funny enough that calls me that!!!! to the joy of everyone when he shouts it over the mike!!! except he says: Suzy baby honey bun!!!!

I've just had two rum & cokes...large ones!!

Life is better with us all in it bud......we must never give up....what doesn't kill us makes us stronger...... as the saying goes :)

Got your email & answered it a little while back, I'm off to bed now, speak to you hopefully soon, keep well & happy x


P.S. not good on facebook -- but i'll learn for U get ahold of Sheena on my {VIDEO } lets talk much :-) :-) :-)... HORAAAAAAAAAY


Hi JetJet So sorry to hear your feeling so low, I am also feeling under the weather but reading of how other people feel. I am not doing as bad after all. I need to get back to drawing. This is something I have started doing since being Diagnosed. I love to draw. Especially animals. I have a little zoo I have been drawing. Thank God for hobbies. I actually sold some of my art at a bazar where I am participate in a Art class every Thursday. Just like my moods, my art has been on slow to stop. I need to be more positive about life. It is a lonely world when I do not have anyone who understands how we feel with Hughes. I would like to be more active with This fellowship. I would also like to go to the yearly Day I read about in which people meet in London or is it St Thomas. Would Love for someone to give me more information on how to be a more active member.... Please Write Soon Your Friend Windsor GIRL.


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