helooooo

[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?

[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

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

[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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