About empathy..

[katarzena]

I wanted to share with you guys a little story about me when I was first diagnosed. I was completely depressed, lost, confused and just wanted to die. I pictured myself that I'll be fat with thin arms and legs, have huge bald head, lose vision and hearing and just go crazy. Geesh it was horrible. I only thought about negative things. At that time (6 months ago) I lost my best friend (I still don't know why we aren't friends anymore) and the other friend died from carbon monoxide poisoning.
My sister kept telling me that I'm insane, why arent I going out? What's wrong with me, I am sick and antisocial. She mad me cry a lot when I was at my lowest point. Even now when I'm feeling much better I can't forgive her for the torture she let me go through, her and I will hardly ever be close as we were before because I hardly forgive when being mollested from someone so close to you.
I wanted to say something about how, in the beginning, I lost empathy towards other. Now I think that's normal with patients newly diagnosed. I was so angry and full of rage that I couldn't stand people moaning about things, like headaches, stomachaches, even when they were sad when a close person died. I turned into a complete bitch and thought; how can you come to me and moan about such unimportant things when I'm dying? That's exactly what I thought.
What I wanted to say is that I believe it's normal to act (well mostly ;D ) that way when you're newly diagnosed. Who wouldn't be mad when diagnosed with such disease?!
I must say a lot of things that were happening int he past half of a year made me stronger and at some point I simply decided to think positively. It was hard and a complete roller coaster of emotions but I think I'm succsseeding.
In two months I'll be done with my 6 month IV cylo. I'll be put on Imuran (most likely) and lower prednisone (I am currently at 10mg) and I stick to thinking that all of it will soon be done. There's not much else I can do, right?
I just wanted to say to all newly diagnosed people to be strong, cry when they feel like crying, but know that you will get through this just like many other people did before you!

Cheers =*

[elephant]

Katarzena, thanks for sharing and being so honest. You are a survivor and love your bravery thru all that you went through.

[DEE]

take care of u Katarzena DEEx

[Luce]

I went through the hatred for everyone else who complained that they were ill - how could they be that insensitive, I'm the one having chemo and all they have is a cold!
You do get over it and I think it's perfectly normal when you go through what we all have. You come to accept that you're kinda on your own with this thing so might as well try to make friends with it and hate has no purpose in this situation.

Pred also changes your moods and behaviour, friends and family find it hard to cope with. My husband thought I was going nuts for a while, but it was just the horrid mood swings that pred causes.

I'm sorry your sister didn't understand your situation and couldn't show compassion and understanding for you. Perhaps she thought that getting back to your old way of life would help you, but didn't consider that it just wasn't possible for you.

[LisaMarie]

Katarzena,
Oh I am so there right now....not as bad as I could be ...but there just the same...had to explain this lovely disease more in depth to my 15 yr old yesterday...tried to play it off as "no Biggie"...cause I don't want to scare him...he is staying with my parents due to family issues at my home...he is doing well there and it was the hardest decesion to make but the best one for him...I skated around the disease for the past month...but the more fatigue and sick I get the more I know I have to fill him in alittle.....My parents are not too happy I am sure but I don't wanna freak him out when i loose more hair and have a chubby face...and am too tired to make my visits with him or go to his games...Lord I do not want him to think I am abandoning him...My mom is under the belief that it is not such a bad disease and most people get remission and live drug free...at first she refused to believe I have it...Ughhh ...she thinks I need drug to calm me down from the pred...because i am looking at the negative..I don't just look at the negative...but truth is there is not much positive about WG...and....the way I am wired is prepare for the worse and hope for the best....Yes I am angry that I have WG...and at times I have my "it's not fair!!!!" moments....but I try to focus back on getting the care I need to keep me going...I am blessed that I can still work.....and Blessed to have found this forum....Thank you for sharing ...you are truly an inspiration
Lisa Marie

[jola57]

Dear Katarzena and LisaMarie, you have been thru your darkest moments ans survived and are stronger for it. No matter if we have support or not from our families, they are not able to see what it is like for us. Outside we look normal(well a little or more round) and our lovd ones an not so loved ones, don't understand tha we feel like chewed up slippers. Please know that we are all in this together, we are a family that understands, supports and does not judge. Comming here is my lifeline. As the song says 'YOU ARE STRONG, YOU ARE INVINCIBLE , YOU ARE A WOMAN"

[Col 23]

Oh Kat, I can feel the pain youve been through, whats that saying what doesnt kill you makes you stronger. I went through alot of the above that you went through and became very depressed. I too had a hard time with relatives and siblings and my kids to start off with. I learnt to narrow my circle and anyone that what stressing me out I lessened the contact. My self esteem has taken a battering and Im only now starting to deal with things a bit better and be a bit more postive but some days its not good.
I think the Pred does cause weight gain but depression can also make us overeat. The soap suds taste in my mouth makes me want something sweet so I can taste it. I think I could have watered the garden for a year with the tears I shed initially.
Thinking of you
Col 23

[Palmyra]

I was so angry and full of rage that I couldn't stand people moaning about things, like headaches, stomachaches, even when they were sad when a close person died. I turned into a complete bitch and thought; how can you come to me and moan about such unimportant things when I'm dying? That's exactly what I thought.
What I wanted to say is that I believe it's normal to act (well mostly ;D ) that way when you're newly diagnosed. Who wouldn't be mad when diagnosed with such disease?!
I must say a lot of things that were happening int he past half of a year made me stronger and at some point I simply decided to think positively. Cheers =*

So Katarzena, how did you get over the anger? What was the turning point that made you decide to think differently/positively?

My daughter has been sick for so very long. I think at this particular moment she is simply tired..really sick and tired of being sick. She does not want to go in for blood tests and another Rituxin infusion. Its time, but along with the rtx have come infections and surgeries. She is tired. How can one motivate and provide that needed empathy for a loved one? Living with chronic disease is different than the care free, old normal.
Mom Palmyra

[Sangye]

Palmyra, does your daughter see a therapist? It's been a key element for me being able to deal with Wegs. I've gone weekly since I was dx'ed in 2006.

[Palmyra]

She did at one time. I will encourage her to re-engage (We'll have to find a new one, as her old one past away! Happens to the best of us..)

Good news is she picked up the ball today. She called her local rheumy for an appointment, and requested the proper tests ASAP. I am learning not to be directive, plant a seed, and let her pick it up when she is ready.

And yes, the therapist is a really good idea. Thank you Sangye :-)