helooooo

[brokenangel]

heloooo guys....dis is broken angel here n m from india...i guess m d only one indian out here..feeling nyc to write down here but sad to be one of d sufferers.i was diagnosed in 2006..n as ul cn c my name to be broken angel i realy am now aftr so much of medicns n hurting people around whose unlovin n uncarin attitude adds to my apathy...sadly nobdy to und d mental trauma i face each day,..jus dnt feel lik living nemor:huh::confused1:

[annekat]

Welcome, Broken Angel. Please don't give up; if you have Wegener's and are having trouble finding support and understanding, we are here for you! Tell us your story, let us know what your issues are, how you are doing, how we can help. There are many caring and knowledgeable people on this forum, and since we are all over the world, there is usually someone to respond to your concerns. Take care.

[windchime]

Hello Broken Angle

Here you will find all loving, caring people that will happily help you through this trying time in your life. Don't give up! This site is also has a wealth of information about the disease process as well as personal experiences of its many members. Please tell us your story and what you are having a difficult time with. Chances are someone else has had similiar issues and can give you some coping tools. Lean heavily if you need to that's what everyone is here for. Hoping you are feeling better.

[Debbie C]

Welcome to the group broken angel. Sorry you had to get this disease to find us ( as we all wish we didn't have it ) but life does go on and things do get better. The most important thing is to find a dr that has knowledge of wg. And don't give up,if you have questions....ask, if you are scared ...talk or if you are mad...vent ( I do that alot. ) But we are like one big family here and now you have somewhere to turn to.:hug2:

[rebekah]

Hi Brokenangel. I know this is a sucky thing to have, but this group is full of nothing but love and support. Please don't ever give up. It may be tough at times, but things do get better. Like others have already said, having a doctor that has experience is important. I'm not sure how much experience the doctors in India have with treating WG, but there are experts that can consult on your case with your doctors which can be found here: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/). Feel free to ask questions and vent any time you need to. We are all here for you.

[brokenangel]

i really feel happy to be a part of this support group forum however sad to be one of the sufferers.i would def lyk to put up my story as to how it all began but at ths point of lyf i feel disgusted and lonely...i feel sad dt despite suffering from such a grave thing and battling wid lyf each day,having bein come out with a near death experience..god tuk away al d happiness from my lyf..n put in such people who on n off hurt me badly...m left wounded n d sad part is i cnt speak out or open up to my parent as she loves me tooooooo much to handle al dat.i also came across people who made my disease my weakness against me instd of supportin n makin me feel loved i was always kicked away....atlst i thank god a lot to bless me wid such a wonderful loving n caring mother....m scared wat wd i do if shes nt dere....i hav so much to tell but cant cz i dont want to c her hurt n feel low for me..thinkin dt her child is goin thru so much emotional trmoil...bt yes..nw smwhr d pred hs strtd givng me steroid inducd psychosis whr i wak up shoutn howlin at nite,,behav lik a mad,,smtms rude arogant.depressed wid no intentns to live...i jus wish i cd kill myslf cz i cnt live a lyff whr m unhappy...evn i wna be loved n cared,,understud by smone..smone to tel me dt m der for u...........but i am jus being told not to depend or rely..evn by my closest people.

[mishb]

I'm so sorry that you are going through this brokenangel.

Please don't give up on yourself. You are the most important person, not only to your mother, but.......to you.
You should try speaking to your mother. I know I would want my children to talk to me. If you can't speak to her, then please keep talking to us.

What dose of pred are you on? the steroids can cause these feelings that you have, as you know.
Are you on any other medications?

We/someone, is here for you, day or night.

[Debbie C]

Broken angel, I am so sorry u feel this way. Michelle is right,steroids,especially at a high dose make you feel awful and this disease can cause depression. I am sure your mother would want to know the pain you are going thru and maybe she can help. Just remember you are NOT alone anymore.And one day you won't feel so broken ,I promise..I've been there too.

[Dirty Don]

Welcome brokenangel...without your particulars, people with knowledge on here can't help you much. Please be more specific. Best...

[Alysia]

Dear Broken angel,
I am sorry for your pains and suffering. you have being through too much.
now you are not alone any more. we are all with you. holding you hands.
please share as much as you want to. I am sending you big warm hug :hug1:

[Wegetarian]

Sorry to hear you are not feeling well. Have you been taking high doses of prednisone since 2006? What other medicines are you taking?

[nagesh]

hi,

sorry to know about your condition, right doctors can help you to over come, do not give up hope, i live in bengaluru india my son 18 years old got diagnosed 5 yrs back, where do you live in india, plz share more on medications etc people here can help you.take care all the best, feel free to contact me if you wish 9341215692

[brokenangel]

helloooooo guys,,its nyc to be back and after goin thru ur replies feels gud to kno dat people r der to listen to me n my feelings...to start up dis week m really very sad and down totaly broken..cz i realised dat the person whom i loved so much unconditionally and cd give up ny damn thing or on tym jus to be supportive wen he needed me,has begun priortsng n sd dat his lyfe n postings(is a dr) are more imp than knowing if m alive or not.i really felt hurt to d core as to i was jus expectng a msd or 2min cal from his end since i ws down n unwell,,mentally nt in a gud frame....i never thot 2min is a big deal in 24hrs,,atlst fr smone whm u lov n care.....but i gues it is for him..n hes made it clear by hs talks earlier as well dat iv got no more value than a dog,,,wen i askd boud our attachmnt n bond i rem he hd said...dat a person develops attachmnt evn wd a stray brought home as pet...........im shattered...

[mishb]

I don't know what to say Angel, that is a disgusting way to treat a person.

You certainly deserve better. I am so sorry that you have to go through that as well as feeling so bad from this awful condition.

I think that it is time for you to have some YOU time. All of these stresses really can make your WG much worse.

I hope you have been able to speak to your mum now.

Angel (Sorry, I'm not going to call you broken), what medications are you currently taking to help the WG?

[annekat]

I agree with Michelle, we need to know more about your WG and what meds you are on. It is so true that stress can make things worse.... I know that because I just went through several days of stress and a cute little Wegs rash just popped up on my forearm. You should find a way to separate yourself from all people who make you feel like crap. Get with your mom, she probably needs you as much as you need her. Are you getting your basic needs met for food and shelter, finances, etc.? Some Weggies are well off that way while others must struggle for a living as well as fight the disease. We'd like to know more about your life, what you do and how you get by each day. Also, I hope you will get in touch with the person from India who posted above! Keep your chin up and take steps to make your life more positive, if you can! Hang in there and keep posting here. We care.

[Alysia]

Dear Angel,
you deserve to have a man who will love you and treat you with respect.
you can be glad to get rid of that aweful man. you are better without him.
maybe having wg will be your guide in the world to find yourself a better company.
we are with you. you are not alone. we are holding your hands.

[brokenangel]

well...thankyu so much guys fr ur suportin words..but at tyms i feel so awful dat as a human being dont i deserve to be lovd n cared for by someone unconditionally???,,,jus bcz i hav a disease dt too an acquired one!!...is it dat i dnt deserv to b happy wid,rely on or depnd on somebdy whom i loved from d bottm of my heart......!!....at tyms im evn being told by my people n frnds to luk out for somone who suffers from d same or similar or any disease n get married....at tyms i cam across ppl who jus abruptly stoppd tokin to me after knoin my illness...atlst im true n honest to tok of it n not hide......der was ds gal whos smhw related to d guy i spok about n i love d most...she cursed me of dying a lonely death wid nobdy to love me n widout food or water.she evn sd m a burden for my mom n dt i sd die soon,to let odrs live happily...evn pointd out at my character..n to addd it all she did d same evn on my birthday..askin me y dont i die!!.....al des words haunt me n m too much under mental instability,partly cz of meds and majorly cz of dis.i just dont wana live nemore..n d person whom i love so much n sacrificd my emotns self respct,on n off makes me feel m nt worth his tym n affectn,,avoids meetng me or calling up...i feel sad dt mayb he dsnt lyk to be wid me,or my cmpany,or my ugly face,my voice,,i feel tooooooooooo sad insyd..n wen i ask hm or expct a few lovin wrds from hm,he shouts sayin y do i depnd on hm for lov n care,i hv mom n bro,i sd decrs my flngs etc.....y m i being treated so bad jus for my fault of loving somone unconditionaly.?/y

[Alysia]

Dear Angel,
Of course you are desereved to be loved and cared unconditionaly.
anyone who doesn't respect you, is not worth to be in your company.
please don't listen to cruel people with no heart. stay away from them.
your life are precious. you are good and kind. your disease can be treated and you can live peacfuly. you dereve to have good life.
find yourself loving company.
please continue to write. we are with you. you are not alone.

[brokenangel]

hi friends.....feeling too low so thot of writin to ul..jus bn to d nephro yesterday..for a follow up..n cam back wid no respite for my problems,disappointd....m suffering from hypertension which jus dsnt seem to go down despite takin al meds...my bp shoots up 2 170/120...n m currently on amlodipine,labetalol.clonidine,minoxidil,moxonidin e,torsemide,prazopress jus fr dat.i havnt told my doc bt yes i stopd takin minoxidil on my own cz i suddnly put on 3 kg n had facial hair..eew..i ws lukin ugly wid dt n wasnt ready to accpet myslf dt way since iv bn alws compimntd to b beutful.....neways,n such hi bp wid jus 10mg of pred.dt too for d scleritis,wid iridocyclitis,keratitis i hav in d right eye...it hd flared up d tym wen my dad passd away n i ws in too much of stress wid no one at my side to kp me at ease....sinc den its bn der...n nw iv also developd cataract for vch i nd to b operated bt cant jus cz of bp. my doc insists on takin rituximab infusion bt m scared as m aware of its ill effects..i cnt risk my lyff for dt bt at d sam tym m sufferin a lot thanx to pred n al dos meds............frends i nd ur prayers....pls do pray for me dt my eye issues are fixed n ds scleritis thingy goes away....iv nevr gt love n care in retrn ever frm my close ones..excpt for my loving sweet mom..........alws gt cursed by ppl fr no fault...n for d frst tym demandin my frnds to pray for me dt i deserv.....thankyu.:sad::mellow:

[brokenangel]

hi friends.....feeling too low so thot of writin to ul..jus bn to d nephro yesterday..for a follow up..n cam back wid no respite for my problems,disappointd....m suffering from hypertension which jus dsnt seem to go down despite takin al meds...my bp shoots up 2 170/120...n m currently on amlodipine,labetalol.clonidine,minoxidil,moxonidin e,torsemide,prazopress jus fr dat.i havnt told my doc bt yes i stopd takin minoxidil on my own cz i suddnly put on 3 kg n had facial hair..eew..i ws lukin ugly wid dt n wasnt ready to accpet myslf dt way since iv bn alws compimntd to b beutful.....neways,n such hi bp wid jus 10mg of pred.dt too for d scleritis,wid iridocyclitis,keratitis i hav in d right eye...it hd flared up d tym wen my dad passd away n i ws in too much of stress wid no one at my side to kp me at ease....sinc den its bn der...n nw iv also developd cataract for vch i nd to b operated bt cant jus cz of bp. my doc insists on takin rituximab infusion bt m scared as m aware of its ill effects..i cnt risk my lyff for dt bt at d sam tym m sufferin a lot thanx to pred n al dos meds............frends i nd ur prayers....pls do pray for me dt my eye issues are fixed n ds scleritis thingy goes away....iv nevr gt love n care in retrn ever frm my close ones..excpt for my loving sweet mom..........alws gt cursed by ppl fr no fault...n for d frst tym demandin my frnds to pray for me dt i deserv.....thankyu.:sad::mellow:
n now ders anodr issue cm up.....my random blood sugar counts are 213....fasting sugar is 102 n post is 195. wid js 10mg steroid ech day....my questn is hav i bcm diabetic now?? do i nd to tk med for it or it wd gradually cm down as n wen d steroids are tapered.

[annekat]

Hi, Angel, good to hear some specifics about your issues and meds. That's a lot of drugs to be on, but then I don't have the hypertension problem... don't know what minoxidil is, though I'm sure I've heard of it. Sorry about your eye issues, that would be hard to deal with, and I know others on here have been through those things. As for the RTX, I don't take it, it but many on here do, with no ill effects. I think they'd be able to tell if you were having a bad reaction and put the brakes on. There are risks with all the drugs, but few on here have gotten into any big trouble with them, though some have not been able to tolerate certain ones. RTX is getting to be the preferred choice for WG treatment and remission, so if your doc thinks you should take it, many on here will encourage you to go ahead and do it. It has helped many people very much. As for the pred and diabetes, it does seem surprising that that would be a problem at only 10mg. But I don't know the answer. I just know that my mom went diabetic for awhile from taking prednisone after a bout with pneumonia and had to shoot herself up with insulin for a time; I don't know how much she was on or for how long, but I know that the diabetes eventually went away. There are diabetics here on the forum but I don't think they all got it from pred use. I haven't heard of that a lot. Please take care of your self esteem and know that you are worth a lot more than the way some people treat you. See if you can figure out what you might be doing to invite those kind of people into your life. I know I've been there, when I was a lot younger, taking up with people who were not good for me. And yes, I will pray for you, and hope that things turn around in your life, and with your illness, soon. Best wishes to you and your mom.

[nagesh]

Hi angle,

plz console yourself, you are passing through tough time, be confident you will over come, if your doc's are advising rituximab go for it, it is a wonder drug
my son recently had it for a flare it takes about 15 to 20 days to start working, you should not consider side effects for now,( side effects may or may not)
controlling wg should be the priority, plz enquire with your Doc that rituximab company is conducting trails in india for WG if you can enroll to that they don't charge for rituximab infussion, sure we all pray for your welbeing.

[brokenangel]

hi friends...dis disappointed n broken angel is back again to bug u all..ysday aftr a really lonnnnng tym i was in a kind of gud mood but as always happns wid me god jus cn nevr cc me happy...i hd bn to d market area wid mom and to binge on some food for my taste buds...i usualy do feel dizzy wen m movin about cz of hypertension n d meds m on..but yesday all of a sudden i felt sooo dizzy,i hd profuse sweating,,,suddnly i cdnt hear nythng or evn open ma mouth,,,felt disoriented n jus cdnt walk,i somhw tried to get into an auto but i wd hv sureshot falln down unconcious...latr at nite i noticd sm blood streaks frm d nose....i dunno y did ds happn...i assume its cs of my stupidity to take labatalol and pred togetdr....i still do feel dizzy whm m puttn it down here...:sad:

[brokenangel]

hi friends...dis disappointed n broken angel is back again to bug u all..ysday aftr a really lonnnnng tym i was in a kind of gud mood but as always happns wid me god jus cn nevr cc me happy...i hd bn to d market area wid mom and to binge on some food for my taste buds...i usualy do feel dizzy wen m movin about cz of hypertension n d meds m on..but yesday all of a sudden i felt sooo dizzy,i hd profuse sweating,,,suddnly i cdnt hear nythng or evn open ma mouth,,,felt disoriented n jus cdnt walk,i somhw tried to get into an auto but i wd hv sureshot falln down unconcious...latr at nite i noticd sm blood streaks frm d nose....i dunno y did ds happn...i assume its cs of my stupidity to take labatalol and pred togetdr....i still do feel dizzy whm m puttn it down here...:sad:

[windchime]

hi friends...dis disappointed n broken angel is back again to bug u all..ysday aftr a really lonnnnng tym i was in a kind of gud mood but as always happns wid me god jus cn nevr cc me happy...i hd bn to d market area wid mom and to binge on some food for my taste buds...i usualy do feel dizzy wen m movin about cz of hypertension n d meds m on..but yesday all of a sudden i felt sooo dizzy,i hd profuse sweating,,,suddnly i cdnt hear nythng or evn open ma mouth,,,felt disoriented n jus cdnt walk,i somhw tried to get into an auto but i wd hv sureshot falln down unconcious...latr at nite i noticd sm blood streaks frm d nose....i dunno y did ds happn...i assume its cs of my stupidity to take labatalol and pred togetdr....i still do feel dizzy whm m puttn it down here...:sad:

Your blood pressure med doesn't seem to be contraindicated with prednisone, however maybe your blood pressure dropped too low causing the dizziness. That happens with my BP medicine sometimes. It could also be an effect of the WG's. Do you have a blood pressure cuff to check your BP?

If you have WG's in your sinuses then that could cause the bleeding. There are others on here more versed in that than I am and I'm sure they will speak to it. Please let us know where your WG's is. That way people can better advise you. Hang in there.

[Alysia]

Hi Angel.
I am sorry for you for have being through this.
please go to your doc and tell him about it. let him check you and decide about your med. don't neglect it.
good luck and update us.

[JeanMarie]

Hi Angel, I'm so sorry you are going through this but I'm glad you found us. There are so many friendly people here to help you. I hope you are better soon.

[brokenangel]

hi friends,,thot of sharing few things wid ul...jus ysday had been to d chest physician,,for a routine follow up but wid hell lot of complaints lyk dizziness,palpitations headache breathlesns...hes added more to diuretics n my bp hs bn fluctuating frm 170/120 to 129/111...jus dunno wat to do..d drs jus kp addin meds bt dnt und my situation,,,,m a physiotherapist n its so bloody difficult for me to do my daily living activities,,wen u fl giddy al d tym n as if ul jus collapse,,on top of it i hav abs no vision in ma right eye thnx to cataract,,i nd to gt operatd fr it bt cnt cz of uncntrold bp.....bt ysday i jus spok my heart out to d dr to cm extent,,,bt yet cnt reveal my insecurities of dyng a lonely death,,of hw bad i feel wen m ill treated n unlovd by my bf n al d words he said to me for d oder gal in hs lyf,,never valued me.i was abt to cry in frnt of d doc bt dn lukin at my mom,poor thing i feel so bad for her dt cz of me she hs to suffer....n hs bn d only pillar of strngth for me..loves me d most...i jus controlld...i was mentally upset cz i jus cnt frgt my feelings for d guy n d way i get treated in return...d abuses,,no msg or cal for days togdr...n i kno dis is al for dt oder gal hes forgottn al dt i did for hm,,i feel sad hurt insyd....wish if once he cd realis my worth..he knos wat n hw mch i feel for him yet kicks me ech tym n granted,,cz iv alws bn an option nevr choice,,,,i feel sad..it hurts me wn i recollct hs words askin me dnt i feel lonely despit being in relation wd hm...i realisd latr dt he ws two tymin n hs lyf was set unlyk me wid hs priorts n pref,,alws ready to throw me out of hs lyf,avoid or break contct for dt gal....i dint know dt person lyk me sufferng frm such disease hs no rights n luck to be loved.....he alws cnsiderd her to b lucky dt she hs him n vice versa...deyr happy etc...i feel sad wn he sd he nevr usto b happy meetng me or calng up or celbrtn stuf wid me,n nw i realis y i ws d frst one to initiate thngs lyk celbrtng bdays etc...iv alwys bn at d begging end....:sad:

[brokenangel]

all des thots,,,d words n people dt hav hurt me...d way m being treated here arnd by people,,d way lyf hs changed alongwid people for me after wegeners,,,al d physical stress n mental stress is making me mad,,i kp crying many tyms a day..at night i end up sleepless or wake up howling n cryng n scared upset....d whole day i be isolated frm people..sad down..feel disgusted n hopeless bd myself,,,get weird n crappy thngs in ma mind,,,jus feel lyk committin suicide....n somewhere yes d way iv bn betrayed n my feelings hav not bn reciprocated by d guy,d way he abused n treated me bad just for dt gal has left a bad scar,,,it hurts me...whras for hm dos words are jus bygones,,,he defnds d odr gal wenvr i point out her mistaks reg me d way she sd dt i sd die etc,,,in turn he points out my flaws blaming dt evn i hav sd wong thngs to her but nevr takes into account dt i m nevr d one to start wd al dt,,,infact i kp my mouth shut n suffer evrthn just for him..n he nevr appreciates dis...he hd once promisd me hel always be der fr me n hold my hand til hs last breath,,,,i dont und how does one girl influenc n brainwash hm soo much,hw cn he b so selfsih n frgt al d flngs atchmnt for me,,,,n wen u say il alwys be der for u d person doesnt evn bodr to gv a call or msg for days tgdr despite knowin my mental state.....sparing 2min for a loser lyk me is waste of tym...al dis stress n my profsnl lyf persnl lyf is taking a heavy toll on me....i jus wanna commit suicide

[windchime]

all des thots,,,d words n people dt hav hurt me...d way m being treated here arnd by people,,d way lyf hs changed alongwid people for me after wegeners,,,al d physical stress n mental stress is making me mad,,i kp crying many tyms a day..at night i end up sleepless or wake up howling n cryng n scared upset....d whole day i be isolated frm people..sad down..feel disgusted n hopeless bd myself,,,get weird n crappy thngs in ma mind,,,jus feel lyk committin suicide....n somewhere yes d way iv bn betrayed n my feelings hav not bn reciprocated by d guy,d way he abused n treated me bad just for dt gal has left a bad scar,,,it hurts me...whras for hm dos words are jus bygones,,,he defnds d odr gal wenvr i point out her mistaks reg me d way she sd dt i sd die etc,,,in turn he points out my flaws blaming dt evn i hav sd wong thngs to her but nevr takes into account dt i m nevr d one to start wd al dt,,,infact i kp my mouth shut n suffer evrthn just for him..n he nevr appreciates dis...he hd once promisd me hel always be der fr me n hold my hand til hs last breath,,,,i dont und how does one girl influenc n brainwash hm soo much,hw cn he b so selfsih n frgt al d flngs atchmnt for me,,,,n wen u say il alwys be der for u d person doesnt evn bodr to gv a call or msg for days tgdr despite knowin my mental state.....sparing 2min for a loser lyk me is waste of tym...al dis stress n my profsnl lyf persnl lyf is taking a heavy toll on me....i jus wanna commit suicide

Angel I'm sorry you are going through such an emotional roller coaster. Your life is very tough right now, but NO ONE and NOTHING is worth committing suicide over. Things happen for a reason and when one door closes another one opens. You just need to wait for that door to open for you. Some day you will find someone who will love you for the beautiful person you are. You will look back on this period in your life shrug and smile saying "I made it through that difficult time and I'm a better person for it." Do you have anything like a suicide hot line in India where you can call and talk to someone about your feelings. You might find that very useful in this dark period of your life. Feel better and please, please keep writing here. We're here to give you all the support we can.

[annekat]

Cindy is right, Angel. You are worth a lot more than how you feel right now. You need to be strong for yourself and your mother. Maybe you can find some new friends and activities to get involved in that will take you away from dwelling on your own emotional setbacks. I know how those things are; I have felt them, and they do become much less important with time, especially if they involve people who aren't worth bothering about. When you are treated badly by these people, it is due to their own shortcomings and not due to anything wrong with you. Could you get involved with an organization that helps the needy, people less fortunate than yourself, or animals in need? I realize with Wegs you need to watch what you are exposed to, so you'd need to choose any activities carefully. But sitting there in the kind of stress you are feeling is not going to help your Wegs; maybe some counseling would be in order? You need some relief that we cannot give you over the internet, although I certainly hope our caring and support is of some help. I guess we are all capable of having suicidal thoughts when things get bad enough, but please don't consider this as a serious option. Think of what it would do to your mother. And yes, if these thoughts persist, please get some help from a professional or a suicide prevention organization. You are in my thoughts and prayers!

[nagesh]

Hi
angle
no no it is not the answer for any thing, you should never think of it ,
sure, you will come out of this situation, think positively. keep sharing
your feelings, believe in god.
plz try open this link and speak to them
Sneha India - Network (http://www.snehaindia.org/network.php)

god bless you.

[brokenangel]

hey,,it really feels great to have people lyk ul wid whm i cn share my feelings and express evn widout a second thot or fear of being judgemental...m so unfortunate dt d person who ws closest to me dsnt evn care to gv a call or listen to me wen i spk up of wat n hw i feel insyd....instd of listeng he jus says y d hell do i irritate hm wid al dat n he dsnt wnt my load nemr,,he takes it as if m blamin hm fr d situation im in,n as escapism blames it on al my drugs.yes i kno steroids do cause psychosis but wt boud d person whos bn crushed insyd wd al d words n wn i cnt see him wid dt girl..d tyms wen iv shed tears wen he suportd her for al wrong thngs dne to me by agn approachn her,d tyms wen he said he cnt be happy widout her,d tyms wen he told her dt m a burden for him n meetng me is lyk givng attendnc,d tyms wen he sent her msgs ful of love n exprssng,hw happy he is wid her,hw he ignord me for her,spoke to her at length,,,lying to me,n meetng her up..spndng quality tym wid her,,n i was just made to cry,feel bad...wasnt i ny deservin of al dis??..wasnt i deservn to be made feel specl??...i jus feel lonely n a loser insyd..by jus trying to hold on to dt person whras d person dsnt evn value me now..i wish god watches.........n yes..guys thanx a ton for ur caring words,,i kno i do nd a pysch i evn spok to my drs bt dn m scard of d drug interactns....n nagesh thnx alot for d helpline..ul mk me feel so very nyc..trust me ur rep bring a smyl to my sad face..n i evn mention abd all of u to my mom...such beutfl ppl..love u guys

[nagesh]

Hi,
angle

really happy if i could bring a smile on your face, well said god will be watching, leave it to him,
for God sake never bring suci___ thoughts. no one is alone we have to fight ourselves,
i know in general about indians mentality, don't care if he is not behaving wisely, leave it him.
keeping your good health is most important, then only you can come out of stress.
as you well know WG is treatable condition don't mismanage it because of your stress.
keep writing about your feeling so that you can feel light,
i can make out from your english you are well educated, but my english is very poor bear with me,

good health good luck

[windchime]

Hi,
angle
but my english is very poor bear with me,

good health good luck

Nagesh, Your english is great for a second language.

[Alysia]

Dear angel,
please read and remember the following, couple times a day, each day:
your life are precious, you are good and special and valuable. you must save your life.
you deserve to be beloved just as you are, with no conditions. you deserve to get best things.
no one on earth is allowed to hurt you. and you are not allowed to hurt yourself either.
if anyone is hurting you, go away from him and dont let him be in touch with you. he doesnt deserve to be in your company.
I am sending you my prayers and lots of hugs.
please hug yourself too.
continue to write.
we are here with you. you are not alone.

[brokenangel]

hi gus back on d blog after such a long tymmm....missed u guys a lot bt cdnt find tym to pen it down...was gooin thru such a bad emotional turmoil..a roller coatsre ryd one cn say,,,m so much frustrated wid my own,,i jus dunt und hw to control my mind n heart...on one end m stuck up wid sooo many health issues. my bp jus dsnt seem to be controlled..despit taking meds,,running frm one to anodr dr.n wid dt m jus nt d way i us2 be,,,i feel bad n hurt insyd wen i look at odrs of my age,so fresh and glowing,in pink of health,,,n luk at me,,i jus feel so exhausted n totaly disintrstd in lyff....i jus weep n weep n weep..i feel hurt wen evryone jus kicks me away...the thots of d guy whm i loved n stil love so much jus dsnt hav d tym to evn know if im alive or dead,,n yes hes made dt clear dat his studies postings are more imp dan knowin al dis crap boud me,,,i js dnt und wid whm shd i share my feelings n hw awry i feel insyd,,cz he ws d closest for me in whom i usd 2 confide,,whras now he has bettr ppl in his lyf to hav fun wid,his family and dt oder gal,,n i now realise dt mayb he never considered me as his own or close enuf,,,but for me he ws and wil alwys be d closest one,,,,n he also knos dis very well insyd,,,yet he treats me bad by ignoring me.i realise mayb he did not ever need a person like me in his lyf,,however he ws alws my priority...today m feeling a bit nostalgic,,as its 31s of dec,,a new years gna begin,,,n i rem celebrating all d new years with him,,althou he nevr planned nethng for me n i was alws d one to initiate plans,,,,dis year i havnt initiated thngs ndr ahs he as usual,,somwhr insyd i feell n pray dt how i wish if he cals up n maks a plan to make me feel special,,n dis thot brings a smyl on my face but i know hes changed n he wont evn bodr to drop a message..dis brings tears back in d flow,,,,i rem wen we had a fight he had said dt he never used to lyk celebrating thngs wid me or come to meet me n was alwys happy being wid her and alws wantd to celebrt wid her...i felt hurt....i kno i cnt make nebdy happy or smyl but its me whu knos i put in my best effrts to mk hm feel happy and special.....make him smyl,,,maybe im nt deserving dat love or care dat smbdy shd celebrate deir joys wid me..i kno nobdy lyks to be wd a person lyk me....n dts d resn y i dint initiate or ask hm to cm down and celebrt wid me dis tym...smhw im feeling lonely and sad insyd,,missing him a lot...i wish he cd und dis....n al ds is jus makin me more menta;y upset..i js dnt feel lyk living nemore,,think of various ways to commit suicide n jus end up all.i wna be in a place whr nobdy knows me or is judgmntal wid me...whr ppl wd jus love u for d way u rr,,,,,my head is paining hell cz of shooting bp n doc hs told me to get hospitalised for uncntroled bp..smhw i escapd makin xcuses of colg,,,last week twice i hit my head on d walla of my bathroom,,,n banged my head wid the bp instrument so dt i bleed to death..........sorry folks for nt makin u smyl...merry christmas and a veryyy happy new year.

[Captian Al]

Please know that things WILL and CAN get better. Your medical issues do not define you. You can and will get better. If someone is not supportive, put them aside at least for now. Concentrate on your health right now. Later, when you are better, YOU can decide who is deserving to be in your life. Perspectives can change dramatically with time...
Wishing you the best. Take care of you.

[mishb]

My dear Angel - we are the ones the will not judge you.
You wanted someone who would understand you, someone who doesn't know you and someone that is not judgmental of you - well here we are :biggrin1:

You can tell us whatever you like, whatever you feel, however you feel - we are not here to judge.

Please don't continue to hurt yourself - it makes all of us very sad. :crying:

May I ask how old you are?

I wish we could make you see that you are special

As far as your bp goes - if you are taking your medication, the only other thing that will help it, is to stop stressing.
Stop worrying about what he, or others, think. Worrying is not worth it - especially on one that has treated you so badly. :mad1:

Angel, I hope and pray that you will see 2014 as a new beginning for you. A new year to reach your dreams, achieve your goals, and most of all, to feel better within yourself and about yourself.

Go and reach for 2014 with your arms wide open Girl and respect it and cherish the time for a new you :hug3:

[Barbara N]

heloooo guys....dis is broken angel here n m from india...i guess m d only one indian out here..feeling nyc to write down here but sad to be one of d sufferers.i was diagnosed in 2006..n as ul cn c my name to be broken angel i realy am now aftr so much of medicns n hurting people around whose unlovin n uncarin attitude adds to my apathy...sadly nobdy to und d mental trauma i face each day,..jus dnt feel lik living nemor:huh::confused1:

We all feel like that sometimes, welcome to the forum, you will make lots of friends here and won-t feel so alone. Try to have a positive attitude because you can have lots of remission or semi=remission time with WG you just never know. One day you can-t walk and the next day you feel great. You never know how you will be one day from the next. A few weeks ago I went in to a coma and now I am back riding my horse, so you see things can get better.You have to love yourself first before your can love someone else. and don-t even worry or think about those people who push you aside, you are worth a lot more than they are. You seem to have a big heart and can love very deeply and your love is true not fake. A big hug, Barbara

[Alysia]

Dear Angel.
you deserve to have a boy friend who will love you and respect you.
please don't hurt yourself. and don't let anyone hurt you.
you desreve to get best treatment and attitude. please ask your docs about your bp.
what meds are you taking ? what symptoms do you have ? what docs are you meeting ?
please continue to write. you are not alone. we are all with you.
have blessed new year. take care.

[windchime]

Dear Angel, I once had a boyfriend that I dearly loved. for various reasons he decided that it wasn't going to work. I went through many months of hell thinking about him, stalking him, and generally making a nuisance of myself. What can I say I was in my 20's. But as time passed the pain healed and I was left with the memories we made together. When I think of him now it is with fondness not heartbreak. Your situation is doubly difficult because you are dealing with a disease that isn't predicable. That's why mental health care is so important if it's available to you. Also get your BP under control and you will feel somewhat better. You must make some effort to help yourself so others can help. Know that we are all here for you.

[annekat]

Angel, we really need to know more about YOU, who you are, your age, your issues with Wegs, your interests, and less about the man who dumped you. I understand your needing to vent about that and it is OK, but there must be other things in life that are meaningful to you. Do you live in a place where you can get out and enjoy the natural world? I know little about India and would like to know more, like where you live and what is nice or not nice about it, and if you travel to other regions at all. Do you have any pics you can share of yourself or things you think are worth photographing? Do you have any pets, any siblings, or relatives who are children?

You can learn a lot from Barbara and the adversity she has overcome, losing a good part of her face and suffering many physical problems related not only to Wegs. But she gets back up on her horse and keeps riding. Maybe we don't all have horses or know how to ride them, but we all must find ways to rise above all this. Some of us play golf, there are even people on here who climb mountains and race sled dogs. No, we cannot all do those things, but they show what people with Wegs are actually capable of. One of us here is a Buddhist nun who helps maintain a spiritual refuge for anyone who needs it, regardless of their religion or background. Some of us are too sick to do much of anything, while others must work at jobs to get by, regardless of how they feel. We are all different. I hope you are spending some time searching the archives and browsing past threads to learn about specific Wegs issues and about us as individuals and how we deal with Wegs.

It is true that many of us have supportive spouses or others who make it a lot easier for us to deal with each day. But not all of us do, though we might like it so. It sounds cliche' that we must love ourselves before we can truly love others or be in a true love relationship. But I guess it is probably true, and those of us who are alone must find ways to love, appreciate, and support ourselves every day, if there is no one else there to do it.

As for your bp, your doc said you should go to the hospital for it. Maybe you should. And there you would have people to care for you for a few days, at least, which might feel good. You need to get that under control, and perhaps get some psychological counseling, too, to deal with the emotional issues you are having.

Best to you, and I hope that 2014 is a lot better! If you have to spend New Years alone, just think of me, as I will most likely be doing the same thing. Once that is over, I can move on to making 2014 better than the last one.

[Wegetarian]

The prednisone will also affect the mind. It sounds like you are going through a difficult time, but it only temporary. Just make sure you take the meds you need to get better and get all the health care you need. Its of course not easy to do everything when you are feeling down, but try your best and have hope for the future.

[LillysMom]

I am new on this forum . . . am mother to a 23 year survivor of wegeners . . . she has never gone into true remission. Am just beginning to learn how to use site. However, you seem to understand what prednisone can do to your mind and behavior. Have you talked to your doctor about this? Perhaps about taking less? Anyone have any other thoughts about this problem?

LillysMom

[annekat]

I know that this is true about pred but that it affects some people more than others that way. I never thought of pred as bothering me too much, but I have experienced "pred rage" occasionally. Sometimes it sneaks up on me. I'm only on 9mg. right now, but it seems like the amount of time I've taken it, that is about 2.5 years since dx, has as much to do with it as the amount. I wonder how different I'll feel if I can get down to 5mg. A little less crabby, maybe? :predrage:

[brokenangel]

helooo guys...wel m sorry i hvnt kpt myslf updated on the posts for a long tym since i was busy wid my college submissions.i went thru d posts and trust me i had tears in ma eyes..u guys are such wonderful people n i really thank god dat smwhr somone lyk ul are der for me whm i cn count on.yes i know i havnt writtn much boud myself n blabbered a hel lot boud d guy who dumped me,,bt dn m helpless as its d only thing on my mind 24/7 after wegeners...often questng god dat y dos he tak so much pleasure in makin me suffer so much,,n tak away ppl frm my life whom i love d most....well my name is neha n m a medical professional..a physiotherapist to be precise located at mumbai in india. currently i am doing my masters in orthopedic physiotherapy and yes trust me m doin al dis wid utmost difficulty.,,my bp has bn on a constant rise.i jus dnt und how to explain my situation to ul/...at tyms i feel m totally goin insane. d thoughts of hw d guy treated me kp running on my mind 24/7 right frm d tym i open my eyes in morng til d tym m on bed...at colg im totaly lost,aloof,alone n isolated.at tyms wen my folks mak a comment on me being fat,,i feel sad insyd...i feel bad for myslf dt such a bad lyf i hav wid no future...i feel bad dt d persn whm i lovd so much has no tym of evn 2 min to evn know if m dead or alive...jus few days ago wen i askd hm as to y he dint msg,n dt i fl lyk suicidin...he bargd sayin hes totaly tired n mentally distrbd bein wid me n dt he hd to visit a psychiatrist who told him to file an FIR wid d police agnst me..he says if i suicide his lyf n future would be ruined cz of me....dis msg left me in great hurt n tears.i was wondering dt dis guy isnt bodered bd my lyf or dt if i suicide i wd die,,bt is jus cncrnd dt his lyff wd get ruined if i do dt.i really felt hurt.....well as for my health concerns,,iv nt bn kpn well,,havn constnt fever god knws fr wat resns...severe headache,dizziness...at tyms i feel my blood vessel wd rupture n i wd bleed to death....bp goes upto 162/129....meds are on...of late my SGPT levels are rising slightly..uric acid level high....iv takn an appoinmt wid d psych dis wk..i feel i nd to vent it out...i end up wid sleepless nights..sit up n wid wide eyes open suddnly get a thot of jumpin out of the window n end myslf...i really feel bad insyd..thinkin dt hw can dt guy just kick me out of his lyf anytm for dt gal..he alws md me feel he ws happy wid her n not me..wen instd i put in al my heart n soul into d relation..evn wd d physical stress of d disease i did so much fr him.bt it hurts dt today he has no value for me in hs lyf.....two days back i ws totaly mentally distressd wid al d thots running dt i end up vomiting in my sleep.i had a dream whr i was puking n i actually puked in bed,i ws shockd n deccd i def nd to c a psych....nw lets c wat he says.....mom has also nt bn kpin well..n bro has gone to pattaya fr work.hes also alone der unwel....i felt gulty n sad on my part dt i cd do little to look after her wen shes so unwel...jus cz physically m nt dt strong nw neidr mentaly,,n in dt state i shoutd at her....m al broken insyd

[brokenangel]

is der anyone from pattaya out here???...

[mishb]

Nice to meet you Neha from Mumbai :biggrin1:

I think it is a very good idea for you to speak to the psychologist.
I hope that you will see that this man should not be in your life.......you deserve better.

I personally, would have washed him way out of my system by now.

Concentrate on getting yourself better before worrying about what anyone else is doing.

Big hugs to you Neha :hug1:

[LillysMom]

Please don't give up Broken Angel. Even those closest to those suffering with Weg do not understand the disease and don't understand those that have it. That is why most Weg patients feel alone and sometimes uncared for because even their closest friends and relatives do not understand and may think you are just exaggerating or feeling sorry for yourself (which you are not). Just keep in touch here, hopefully that will help.

"Be gentle with yourself, you are doing the best you can."



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[annekat]

Neha,

Michelle could not have said it better. I'm so glad to hear a little more about you. I wish you could shake this guy out of your mind. I know it is hard, and I hope that the passage of time will do the trick. But that will be important time for you to focus on your own well-being, both physically and emotionally, and perhaps to pay more attention to those who love and need you, your mother and brother. It doesn't sound like this guy deserves such an important place in your consciousness.... the people who truly love you do deserve that. And you yourself... I'm worried about your blood pressure and other health issues. It sounds like you have access to good medical care and I hope you are making the appointments you need to address these issues. I'm glad to hear you will see a psych soon and hope he will be a good fit for you and will be helpful... I know that process can take some time, too.

[brokenangel]

yes i kno bt den i dunno smhw its all affecting me insyd n killing me each day...i feel so bad n hurt insyd wen i recollect al d thngs he said to me..wen i put in my heart n soul for him n d relation widout ny expctatns n al dt he said was he wasnt happy being wid me..he said wid me hes temporarily happy bt wid her he is alwys happy...n dat he nevr used to lyk to come n meet me at all...he alws made me feel n said dt he nevr got to stay a free lyff bcz of me..bt i fail to undstnd dt isnt it obvious i wd expct thngs frm him as my bf n spcly wen i dont kno dt hes going arnd wid dt female as well behnd my back???...it ws his mistak dt he manipulated thngs to hide dt frm me n to please her...n yet he blames me..he blames it sayin he ws wid me in a relationshp jus fr my health so dt d breakup dsnt affct my health...each tym i tok bd d attachmnt he dsnt accept d fact dt he equally is attachd to me,,bt jus fr dt gals sake hes ready to evn frget dat attachmnt...n ech tym he says dt i blackmaild him statin my health resns for him to b wid me...today i feel so hurt n alone..dt i did so much for him despit my illness n today hes so busy wid hs own ppl n happy wid dt gal dt he dsnt evn hav dose 2min to spare n kno or calup if m evn alive or not..smtyms i feel it was dt plannd by him wid dt gal tryin to find ways to kick me out of hs lyff....it affcts me mentally...m broken..n goin back hme i feel sorry for my mom for she waits to cc my smyl at d end of d day...i cn cc dos hopes in her eyes dt she wants to cc me d way i was,,bt here i am goin back wid a sad face n eyes...a hopeless female or buffalo lying on d couch....shes got me all pocbl thngs on earth to lose weight bt am also hlpless dt i feel drained.....i so very feel bad..

[mishb]

Hi Neha,

Take a look in the mirror - there, yes her.....that person you are looking at - she is your reason for living
.........she is also your competition - the only one that you have to worry about.

Please don't worry about this other girl or about this bloke that has treated you so badly. Neha is the only one that matters in this.

A read something the other day that said ............ there are 100 reasons for you to go back - but there are thousands of reasons for you to continue forward.


Today you woke up.....therefore it is a good day.

Neha, what I'm trying to say is - don't worry about yesterday, or last week or last month ........think ahead, and think about you............YOU CAN DO IT :thumbsup:

[Alysia]

Hi Neha,
my heart is going out to you. I think that you deserve to have a boyfriend who will be loyal to you and who will treat you with respect and love and caring. not less then that. if your boyfriend is willing to do it, then stay with him. but if he can't or doesn't want to, please don't stay with him.
no one is allowed to hurt you. your life are precious. insist on being in good relationship.
you are not alone. we are with you, holding your hand. take care and continue to write.

[annekat]

I would add that it is always OK not to have a boyfriend for awhile. Then you will be free to meet the right one when he comes along. I have been through something like what you are going through, a long time ago. I do remember the pain of it. It is true that time will heal wounds, but you must find positive ways to occupy yourself in the meantime. I, too, am very sorry you are going through this and hope you can find ways to rise above it. :hug2:

[Captian Al]

I have not personally experienced your serious health problems, but I can say that I have grieved deeply over broken relationships. On hind sight and with time (and not as long as you think), I found myself relieved that that person was not in my life anymore. If a relationship does not feel good, do not give it your energy. You should only allow people in your inner circle who are supportive, make you laugh --it shouldn't feel like work. You will find your 2nd wind. There are many friends and great experiences in your future that you haven't even dreamed of yet.

[brokenangel]

hi frienz..ul hav no idea as to wat kind of emotional support ul give me wen m down n wid utmost desires of suiciding or ending myslf.as i said i was to go to d psychiatrist d oder day..i did go n d scenario out der was indeed scary.my mom was equally scared...smhw i ws feeling vulnerable as to in wat state i am in today..lyk being a dr myslf m amngst d psychiatrically ill patients.wid great courage i went insyd n was carrying a list of things am expereiencing.the dr der told me to read out dos things n i jus cdnt speak out a word.i startd crying.den aftr sometym he strtd askin me my issues.to my surprise he gave me a book to read in wch d signs n symptoms exactly matched wid wat i was facing.he then said dt wat i am going thru is severe depression wid psychosis n mania for wch hes prescrbd certn meds.i havnt strtd takin dem yet cz in acute stages they induce rader aggravate d suicidal thoughts n my mom is scared fr me...i dunno smhw right frm d tym i open my eyes d thots racing thots cm to my mind...it al recollects hw smbdy humilitaed me..smbdy poked at my illness,,,making me feel inferior at my college or being biased jus cz m nt dt phy active or bright cz of d disease n bp issues...people jus try to pull me down,,n i recollct hw bad my guy md me feel by comparing betwn me n her,,in d initial stages when he hd told me bout her..sayin she luks too good,,many ppl r after her...wen i hd spoken of y he treats me dis way n is so affctionate for her..he hd replied saying " u cn say shes lucky....i smhw felt bad...dat m i sooo unlucky???not to be loved by him?..mayb m nt dt pretty or gud lukin n nt many ppl r after me lyk her...bt dos dt mean watevr thngs i did for him frm d depth of my heart holds no value??????...evn if i jus questn him askin dt y hasnt he msgd me in so many days he replies barging at me sayin when i had told u i wil not be marrying u den y ru teling me boud suicide n stuff..y do u expct love n care frm me wen u hav ur mom n bro,,i jus feel so helpless n hopeless,,i dunno hw to not feel for him,,he fails to und d gravity of my flngs for him,,he dsnt realise dt who odr gal wd hav bn wid me evn on tokin terms aftr so much of abuse hurtin n humiliation?? d very resn m stil der is d fact dt i love him a lot n dnt wna lose him...der ws a tym wen he also said he wd nevr lose me or brk contacts wid me...bt at tyms hes evr ready to kick me out jus for dt bloody gal...it hurts

[windchime]

Hi Angel, I'm glad that you were able to see a Psychiatrist the other day. Did he/she give you any specific way in which to begin the meds since they can aggravate your symptoms? It's really great that they were able to give you a diagnosis and that you have gotten through that part. Do you have another appointment? Stay with it as it looks like this will help you heal as soon as you can begin with the meds. They will hopefully bring things under control and life will look a lot different to you. Hugs to you. :hug1:

[Alysia]

Hi Angel
thanks for updating us. some of yours psychiatric symptoms can be caused by the meds you are already taking.
I understand the need to be careful with the psychiatric meds, not to make you commit a suicide.
I think that the best option to you now is to be admitted to a hospital for couple of weeks and only there to start the meds. this way they can monitor your state and keep an eye on you. also to take a better care of your wg.
I am sending to you my prayers. stay safe.

[brokenangel]

Hi guys...bak on d blog aftr long tym...bt had to write on ds...iv been hospitalised for the last one week.was sufferng frm very high fever n fatigye....d fever wd come on wid chills..initualy it was low grade bt dn I had been to pune..a city out here in india.thot dt an outing mite help me cm out of depressn n fr moms sake.went to osho park......bt dn aftr cmin bk my fevr wrsnd.....so thot I btr gt admittd..Was feeling a bit low as m al alone here wid no relatvs n frnds visiting me....missing my dad as I lost hm in d same hosp....my bro is also nt here. .its just me n mom...feel so bad dt ppl whm I helpd n who msgd me fr deir wrk n stuf hv no tym today to msg n enquire og my health....al mean ppl....n d guy whm I lovd so much id also nt boderd if m aliv or nt. ...I so feel vry hurt....dr hs dne a battry if tests....nw lets c wat hapns n jus pray d fevr goes away soon...

[annekat]

Hi, Neha,

Thanks for the update... I'd been wondering how you were doing. So sorry you are in the hospital but glad you are in the right place to get the help you need. I'm sorry the outing with your mom resulted in your health worsening. It must be sad to be there in the place where you lost your dad. I'm glad your mom is there for you. I hope and pray you will improve soon and be able to get on with your life. Let us know.

[mishb]

Hey Angel, I'm glad you are back.

What a rotten month you have had. What was the reason for the fever, did the hospital say?
Did they put you on any more medication?
How is the blood pressure going now?

I am also glad that you have your mum around still.
Fingers crossed that things start getting better for you

[windchime]

Feel better Naha. Sorry to hear about the fever, but perhaps it's a blessing in disguise. They are running the tests that may get you on the correct meds and help you to stabilize. Thanks for the update as I was beginning to worry that we hadn't heard from you in awhile. Hope you get out soon and can get on with your life. Hugs to you. :hug1:

[nagesh]

Hi, Neha

sorry to know that,you were hospitalised for hi fever,
good, you are back in to forum, me and my wife were thinking of you many times.
you are not alone, be positive.
friends and relatives can't understand WG. means, they will not be knowing how tough times you are passing through.
Hope, things will turn to your favour soon. God bless you, get well soon, we pray for your well being.

[Alysia]

Hi Neha,
I am sorry for all the tough time you are going through, the fever, the sorrow, the lonliness.
I hope that you will soon feel better in all ways.
we are hollding your hand. prayers and hugs to you. take care.

[brokenangel]

Hi frnds....m still hospitalised...feeling alon..ofcrs few of my frnds tyrnd up to meet bt m feeling hurt insyd dt despite leavi msgs thru his frnds so dat he cms to kno dt m hosptldsd n missing him..wanna meer him..he did nt cntct me back....m in a miserabl state...mom also kps cryin wen she sees me cry...drs hv dne s lumbar puncture on me.durn d proc my heart rate dropped. Hd to b gvn atropine. ...its paining like hell.cnt move about...

[annekat]

Neha, I'm sorry to hear you are still in the hospital. I'm glad you have had some visits from friends. Those are people who really care about you. I wish you could stop worrying about that guy... I know it is hard. But if he doesn't care enough to even contact you when you are seriously ill in the hospital, then he isn't worth even thinking about. Easy for me to say, I know. Best to you and your mom and I hope you will see some recovery soon and be able to go home.

[mishb]

Neha, Angel, it's time to let him go sweetheart. :hug2:
It's time to get yourself better, get out of hospital and show him that you can do it without him.

I'm sorry that you are still in hospital, or went back in.
What are the test results showing?
Do you have something other than WG that is causing all this extra trouble?

Get well soon

[Alysia]

Hi Neha.
I am sorry that you are feeling so bad and so much pain. it is good that you are still at the hospital. ask them to help you as much as they can: to take care of all the things that are causing you pains.
If there is a psychologist at the hospital, ask to talk to him, and/ or to a social worker.
take care and please update us.
you are not alone. we are with you :hug1:

[brokenangel]

Hi frenzies. ....I m bk home now aftr a really long ling struggle...I tel u I realy missd d home made food n yummy dishes md by my mom....nw m at cmfrt....bt smhw m still unwel despit all d workup n soo much of heavy antibiotucs..I guess I hd told ul about the lumbar puncture dt I hd to go thru...dey wanted to rule out meningitis n stuff...guys it was really painful...I kno d drs wer cnsdrn me to b brave as m a medico bt ay d end if it m a human being...dey tuk out 25ml of cerebrispinl fluid...aftr dt my heart rate dropped to 40 n dn I was gvn two injctnc of atropine...I hd tachycardia as well....agaim I wd say I hd a meeting radr a handshak wd death.....aftr dt dey pland to tak me fr an mri..n as sun as dey made me lie dwn d pain was horrible..I cdnt gt it dne....d pain is still as terrible as it can be. ...n on top of it m getting pins and needles sensation d whol spine....initiaky d dr hd put a wrng needle dt twistd insyd cnsdrn my big size...dn dey put anodr....overal three ndled..n post dat I hd to lie down flat on bak in headlow postn fr six hrs...

..I was very depressed alone n sad...missd my dad...cried a hell lot...n a hell lot..I feek bad fr myslf wen I c my frnds njoyin deir lyf gettin married n njoyin deir lyf..n here I am each tym thinkn boud d possibilts of hw long wd I live...I feel insecure wen I thnk of future as to wen my mom wont b der..I wd b al alon in d wrld wiyh no one to luk afyr or hold me...

[Alysia]

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. :hug1:

[mishb]

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

[ingemlb]

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.

[brokenangel]

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,,,,,

[annekat]

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.

[mishb]

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

[brokenangel]

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..

[Alysia]

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.

[brokenangel]

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

[Alysia]

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.

[brokenangel]

Thnx dear...such wrds of courge boost up morale to sm xtnt

[annekat]

Thanks for updating us, Angel. You are going through some very rough times with your health and I wonder if better treatment might be available to you somewhere. I'm glad you seem to be getting over "the jerk", and your health is more important now than worrying about any man wanting you. You need caring friends like the people on here, and hopefully some whom you can see in person, and I'm glad that your sweet mom is still there for you. Best wishes for better times ahead.

[brokenangel]

Thanks a lot annekat...I really wish n pray I find somon who wd love me fr d person I am n accept me wd wegs

[annekat]

Thanks a lot annekat...I really wish n pray I find somon who wd love me fr d person I am n accept me wd wegs You're welcome. I'm single, too, and wish the same thing for both of us. I am not as sick as you so have more opportunity to be out there meeting people. I hope you can get past your health issues eventually and be able to start a new life.

[Rini]

This is something to walk away from. There are too many people on this planet to have to deal with someone like him. I really really promise there is someone else for you. I have seen people come together from different sides of the world even. Someone better is closer than you think.

[Rini]

You're welcome. I'm single, too, and wish the same thing for both of us. I am not as sick as you so have more opportunity to be out there meeting people. I hope you can get past your health issues eventually and be able to start a new life.

Terrible people are bad for your physical health. Please let this fact give you strength to find better people.

[annekat]

Terrible people are bad for your physical health. Please let this fact give you strength to find better people. Right, Rini. There are good people out there. It will happen when it is time. I'm OK with being single for the time being, and do believe there is someone good out there for me. I see a lot of people on the weekends when I'm selling at the farmers market and that's a place where many quality people can be found. i just wish Angel had that same opportunity.

[Rini]

Right, Rini. There are good people out there. It will happen when it is time. I'm OK with being single for the time being, and do believe there is someone good out there for me. I see a lot of people on the weekends when I'm selling at the farmers market and that's a place where many quality people can be found. i just wish Angel had that same opportunity.


what do you sell?

[annekat]

what do you sell? I sell pottery that I make, and have been doing so there for about 23 years.

[Rini]

I sell pottery that I make, and have been doing so there for about 23 years.

that sounds so fun! I do stain glass on a small scale level but would just freak out to have a hot enough kiln to use to melt and do fusion glass art. This is a very nifty job you have!

[annekat]

that sounds so fun! I do stain glass on a small scale level but would just freak out to have a hot enough kiln to use to melt and do fusion glass art. This is a very nifty job you have! A glass kiln does not need to get as hot as a pottery kiln. And it does not have to be very big. You should take a class or something! We can always talk by PM, here or on FB. (Apologies to Broken Angel for hijacking the thread....) :)

[Rini]

A glass kiln does not need to get as hot as a pottery kiln. And it does not have to be very big. You should take a class or something! We can always talk by PM, here or on FB. (Apologies to Broken Angel for hijacking the thread....) :)

yes very sorry for hijacking! I really am happy you found us! What did you do as job or hobbies brokenangel? Are these the same now or will you look for new ones?

[annekat]

yes very sorry for hijacking! I really am happy you found us! What did you do as job or hobbies brokenangel? Are these the same now or will you look for new ones? No problem, Rini. It happens all the time. It's just that we don't hear from Broken Angel very often and this is her only thread so far, that I know of. I'm also interested in what she does or has done for a career or hobbies. I'm hoping she can stay out of the hospital long enough to get out and enjoy life a little.

[brokenangel]

Guys...m a physiotherapist by professn n hd bn practcn really well al dz tym...it felt gud treating patients but at d sam tym I somehow felt dt m abl to alleviate my patnts suffrng but wat boud my pain....d escapsm n ovrstressng myslf by doin too mny jobs n hom visits at a time aggrvtd my cndtn n I endd up being hosp....I ws just trying to run away from thots....im a singer as well..hv dn 12 yrz of music wd a degree.dne tv shows..

[mishb]

Wow Angel, that's sounds wonderful.

I'm sorry that you got so sick that you couldn't see all of your patients and you ended up in hospital.

I hope you can manage to stay out of hospital a little longer and maybe take up your singing again, full time

[brokenangel]

True...but I feel sad fr d fact dt my patients cn gt bettr wth my trtmnt but der seems ti b nothn dt cn cure my suffrng n pain..I feel soooo helpless

[annekat]

True...but I feel sad fr d fact dt my patients cn gt bettr wth my trtmnt but der seems ti b nothn dt cn cure my suffrng n pain..I feel soooo helpless Great to hear more about you. I think I remember you mentioned being a physiotherapist earlier in the thread. Now knowing you are a singer, too, is great. It's heartbreaking that your pain and other symptoms are so unmanageable. Are these problems all from Wegener's? Or are there other complications, too? I hope the docs who are treating you have enough experience to do the best they can for you.

[brokenangel]

D scleritis keratitis iritis n cataract in d eye is due to wegs steroids dt m on fr it...n nw steroids are causng syd effcts..

[annekat]

D scleritis keratitis iritis n cataract in d eye is due to wegs steroids dt m on fr it...n nw steroids are causng syd effcts.. So the eye issues are the main area of wegs involvement? Not to minimize it, it sounds awful, and would make it hard to function in life if you get no relief and the steroids cause big problems. Do you have any other involvements such as nasal/ear/sinus, lungs, kidneys, joint pain, or have you had at some stage? Are you on any other Wegs meds such as the standard immunosuppressants ( CTX, MTX, RTX, AZA, Cellcept) or have you been in the past? Have you ever been in remission or close to it? Are you currently still in the hospital? I wonder if there is an ophthalmologist with significant WG experience who you can see, if you aren't already seeing one, in addition to a good rheumatologist whom I hope you are seeing. Sorry for all the questions, I just really wish you an end to these problems so you can get on with your life.

[brokenangel]

Anne..I was at a stage whr drs hd lost all hopes...hd dn plasmapheress on me..I hd lung collapse n ws on venti..hd multi orgn failure..hd three cardiac arrest cz of all compkctnd....iv cm a lonnng way n stl my problem persst...my eye js dsnt seem to gt betr.n I cnt evn cry n vnt outy frustration. .yeah iv bn on endoxan cellcept etc...bn to mny ophthalmologist but here in india ders no ons who sems to spclz

[annekat]

Anne..I was at a stage whr drs hd lost all hopes...hd dn plasmapheress on me..I hd lung collapse n ws on venti..hd multi orgn failure..hd three cardiac arrest cz of all compkctnd....iv cm a lonnng way n stl my problem persst...my eye js dsnt seem to gt betr.n I cnt evn cry n vnt outy frustration. .yeah iv bn on endoxan cellcept etc...bn to mny ophthalmologist but here in india ders no ons who sems to spclz Thanks so much for the explanation. You have really been through a lot and recovered from a lot, it sounds like. I'm so sorry the eye thing doesn't seem to clear up. Here, too, there aren't that many ophthalmologists who specialize in vasculitis, I don't think... some know more than others, and rheumies who specialize know who the more knowledgeable ones are. But in any given location we are limited in whom we have access to. It sounds like you are on top of doing the best you can for yourself, even if it doesn't end up solving all your problems. I wish it could get better for you and hope to hear someday that it has.