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  1. #71
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    Dear angel,
    you have being through hell and back. you survived and you will be better in time. you are more storng then you think you are.
    welcome back home. please continue to update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  2. #72
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    I'm glad you are out of hospital now Angel.

    How horrible to have to have a lumber puncture as well.
    I'm glad that they could rule out meningitis.

    Don't start worrying about the what if's. I'm sure everything will be under control way before the what if's eventuate
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  3. #73
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    Hello Angel. i feel for you. Must be so hard to not have many around supporting you. Good that you survived your ordeal. When we look back in life the horrible times never seem quite so bad and you have survived so take a day at a time and expect things to be better. I find an optimist has a happier life. I rather be disappointed now and then when my wishes don't come true than be unhappy thinking they never will

    I spent a few years bedridden and on a treatment that was too difficult to explain to a lot of people so I shied away from contact with friends and family. They simply couldn't understand and as my husband worked I spent days alone at home. So I joined a virtual community called Second Life and made some wonderful friends. It was a way of escape for me. Nobody could see me or how sick I was and I could be active and creative go to concerts and dances, attend poetry readings and meet up with friends face to face (virtually) from all around the globe. Many of those have become great friends to me and quit a few I have now met in Real Life.

    I do recommend this virtual world to people who are handicapped or too ill to do much in Real Life and can't be bothered explaining to everyone how they feel. IN SL I was able to attend art exhibitions, absail down the Eiffel tower, visit a replica of the Jerusalem Temple prior to its destruction, some cathedrals that I used to love visiting when I was able to travel and it almost felt like it was real. I was immersed in this world the only senses not engaged were touch and taste and smell but somehow the rest compensated for that. The accounts are free. The events are usually free, people just tip if they can afford. One of my favourite guitar player / singer is from Wales and he has visited me in Australia. His girlfriend lives here and they have both become friends. They even visited me in hospital earlier this year.

    Just mentioning it to you Angel as you mentioned in other posts how lonely you get. I found this totally fixed my loneliness. You do need a reasonably powerful computer because the graphics are pretty amazing. All the best to you and tell yourself that things will improve.
    "Slow and Steady wins the Race"
    All the best, Inge

  4. #74
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    hello guys,,,m back on group after a veryyyyy long time..hospitalisation was realy very tough for me but somhow back out of it...now my nephron insists on taking rituximab for my worsening scleritis,,,as a part of escapism iv askd for 2 months time coz I don't really know how much will rituximab work for me as far as my eye part goes,,trust me friends the eye pain is terrible,,redness increased,,on top of it I have cataract in the same eye,i lietrally cant see anything.i evn went to d opthal who advised me to take pred shot in the eye,have taken two injections and hoping it gets better,,but each tym I hav to face some or the other ordeal and wen I hav tears in my eyes it worsens....after hosp wen I was going thru all d loneliness and missing my bf,,i realised aftr comin back dat he hd just deleted me form his fb account and was enjoying happy times with that other girl.during hosp I messaged him so many tyms pleading to atlst come n see me once in the hosp,,but he just ignored and behaved as if he dsnt evn kno me,,n here after being discharged I come to know dt he was jus njoying with dt oder gal....my heart crushed to death,,i cried lyke hell...in a fit of rage I just cald up at his home,,i evn tried to convey d msg to him dt im hosp..thru his frnds,,but still he kept ignoring me..and aftr knoin dt iv cald up his place he msgs me abusing dt iv ruined him n just broke off all ties in seconds,,,i was deep down hurt wondering as to how cd he be so much bloody selfish dt wen I was in so much pain,alon at hosp he dint evn hv d humanity to enquire atlst,,,hw cn he jus forget al things n break al ties with me widout evn thinkin once as to wat im goin thru...d guy who onc promisd me dt he wd nevr break contcts with me was jus havn a game plan in mind as to finish off with his xams n den wen done jus kick me out of d picture,,,,now wen I req him each day msgsn out of helplessness to atlst be with me as a friend for life,,he just dsnt rep..n at tyms says he dsnt want to b with a person like me...I fail to und wats my fault.??? jus dt I loved him so genuinely n full of heart??,,,d reason Im pleading is coz im all alone in life...I don't have any relatives or friends,,,my real brother also doesn't care for me n cals me a physically handicapped person in rage,,,i feel sad lonely n insecure of my future as to wat wd I do being unmarried and wen evn my mom wont b der...I feel I nd support and someone to hold on to...but god just leaves me with no people in life,,n all alone,,,m sad heartbroken to d core,,,,,

  5. #75
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    Nice to hear from you, Angel, sorry you were in the hospital and glad you are now out. We are more interested in hearing about your health issues than that old boyfriend..... he really does not sound worth bothering with. Easy for me to say, I know. But continuing to be hung up and stressed out over him will only affect your health in negative ways. I hope you can put him in the past and get on with your life. There must be other people who can give you the support you need through these difficult times with your health, both mental and physical.
    Anne, dx'ed April 2011

  6. #76
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    Hi lovely Angel.

    I'm glad you came back to let us know how you are doing.
    I hope that blood pressure comes down and you can start feeling better again.
    .........and I know that it is really difficult (we have all been there before, believe me) but you really can do without the ex boyfriend
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  7. #77
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    Hii friends. ..bk to ds group aftr a lonnng tym...was hospitlsd last month fr very high fever 105.6 n lo bp 80 / 52. Was in icu n agn a near death experience. ..agn was lonely wd jys mom by my syd...ds tym I realized dt lyf is to njoy evry momnt cz u dunno wats next...I ws regretting so much dt I wasted my precious feelings emotions n yearz fr dt jerk who in last few months dint evn bodr to kno if m aliv or nt...I ws feeling helpless lukin at my mom...it was a public holiday wd al banks shut n mom was trying evry picbl thng running here to der to arrng fr money so as to admit me..

  8. #78
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    welcome back angel. I am sorry that you have being through tough time and glad that you are feeling better in all ways. take care and update us how you are doing.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  9. #79
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    I am indeed super frustrated now guys..I cnt hv albd meds nymore n sometimes feel it wd hv bn much betr hd I nt bn bk....I was bombrdd wd 7 antibiotics 21 bottles each. And 30 bottles of paracetamol. Post dt also m on antibio s n host of odr meds...my eye jyst bloody dsnt gt ny bettr...it hurts me bad n gvs hell of pain fr vch I hv to tk painkillers dt indirectly affct my kidneys. ...nthng excpt steroids seem to help n nw ovr nine yrs steroids are damagn me intrnly..steroids inj in eye gs caused pyffy swelling under eye dt luk awful cosmtcly...marriage concerns...nobdy wd want such a wife

  10. #80
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    please continue to take your medications. it is important. if you don't feel well enough please go to the hospital.
    I understand the frustration. it takes time to heal. hang in there.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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