What wegs took away but I will get back

[jola57]

Hi all, just my way of venting. My hubby is going scuba diving on Bonaire and I am feeling low, so here I am posting pics of life before wegs If you like, look at my My life album in my profile:sad:

[Jack]

It looks like a great life and something to look back upon with fond memories, it's nothing to be sad about. But you can only take support from the past, you can't afford to live in it. The job in hand now is to get as well as you can so that you can have more years of enjoyment. They won't be the same as the ones you have already had because life moves on and everyone changes with time, even the ones who don't get sick! However, there is no reason to believe that your New Normal will not be an acceptable alternative to what might have been.

[elephant]

Jolanta, I love the pictures. You have a beautiful family!

[Sangye]

Jolanta, I look at those pictures and feel similar pain. What lives we had! I often feel like life is passing me by. My friends travel, go to work, go to family picnics, walk their dogs, go for hikes, etc... I don't do any of that. I've been pretty down about it lately. I know a lot of kids with serious illnesses--many of them from birth-- who've never had a moment of good health. It helps me to contemplate that when I feel depressed. Not to diminish my own suffering--it's important to acknowledge it-- but to remember that I still have much to be grateful for--that reflecting on my past can be more than a source of pain.

[freakyschizogirl]

Hey guys. I feel lucky in a lot of respects because i'm still healthy and dont have a lot of restrictions on what i do...for now. Who knows when that'll change? I'm lucky in lots of ways. And you really appreciate small things when your world feels like its falling apart. I feel like i am only just holding myself together coping with my diagnosis. My way of coping with this now is (and you're all gonna shout at me) is to go and get a new tattoo...while i can. Cos its symbolic and my kinda therapy.

When those dark moments creep in try and think of something small that makes you happy like your kids, baking a cake, buying that dress that you just have to have, having those who love ya there to support you and best of all this forum. The best support you can get. x

[Jack]

My way of coping with this now is (and you're all gonna shout at me) is to go and get a new tattoo...while i can.
I don't think anyone here will shout at you, they may not agree with you, but few of us seem to be judgemental. Perhaps it goes with the territory?
I hope your tattoos bring you happiness! :)

[misskay]

Nothing wrong with tattoos... I currently have 18 of them. ;)
My only concern is if you're currently on any meds, and the possible risk of infection and slow healing issues.

[jola57]

Thank you all for your support, it was a rare down kind of day. True Jack, we do have our new normal, but once in a while it is hard to remember what it was like before wegs. Sharing with my friends is the best way of saying this is me, I'm still inside. I may not be able to do many of the things I did before but look at Cindy, Mt. Everest. So I can always hope.
Freaky, go for the tatoos, just remember that they always be there, so put it in a place where you won't mind it showing.
miskay, wow 18.
Sangye, it is a blessing to be here because in one way or another we understand what we all feel. Most days i am ok with my new life, it is when my hubby does something that we used to share and I miss, that the green monster rears its ugly head. LOL
I love my life.

[LisaMarie]

i too have had some low times lately ..several times i just wanna throw something ..when u add this disease to my complicated life...married with a blended family and several problems of a very broken family....and financial issues...i just wanna bagg it all and call it quits....then my sons show me love or my puppies won't leave my side when i hurt so bad or feel so sick....one of my daughters shows me love like i am her mom....been their only mom for 9yrs nows...somehow make me wanna accept my new normal....not love it but accept it as it is what it is...and one day i will get a tatoo....lol

[jola57]

Not an easy life but wonderful when love is given back.

[elephant]

When I was going through my darkest hours dealing with WG, I did not even belong to this forum...it took awhile for me to get on. There was a point when I felt like I could not take care of my kids and I couldn't for two months...I was blessed to have family fly down here and take care of them. I could not function mentally or physically. I am so glad I am feeling better.

[jola57]

I was lucky to find this group early on. It was unbelievable to be able to say "that is exactly how I feel and what I have". None of the docs were able to tell me what to expect. The biggest shock was when i had the dropped foot and neuropathy. hearing that so many have the same problem put it in prospective for me.

[marta]

I love the pics Jola. I don't have anything profound to say because I am having a low brain level week (and I'm pretty low at the best of times,) but I can say I feel like you're all an amazing extended family and I'm glad I have you all in my life even if it's only in the form of little words on my computer screen. You're all strong amazing people and we're in this together, and had I not gotten this silly disease, I wouldn't have known any of you exist, and I'm glad I know you all exist and the kind, thoughtful, gentle, remarkable people you are. When I was given my diagnosis of Wegener's I was THRILLED, yup thrilled, because the diagnosis given to me hours before was something that I don't think I could have survived for very long, so for me WG was a blessing. I say bring on the new normal ( a bit tongue in cheek, as I sometimes grumble about the new normal) but there are adventures and challenges everywhere, and perspective, well, it's perspective and any situation can be great or it can suck. From what I've read on the forum, you all have chosen to look at the way that this can be a good thing, and often with humour, and have inspired me to do the same.

[freakyschizogirl]

Hats off to ya misskay. 18 is loads. I'm not on any med so i'm going for it!! it will be my second. And i like to put em in hideable places...hate looking at brides that have tattoos its tacky (i hope to get married one day,lol)

I have a friend who's ill too it really helps to vent to people who understand you...and the medical jargon!

CT scan tomorrow..whooohoo!!

[Brooke]

Hi Jola -
I hope you are having a better day today! Try and do some things that make you happy, maybe even if it is just around the house. For example, I love the Fall and Halloween and the Holidays, so I have been enjoying decorating our kitchen with some fake pumpkins!

[jola57]

Freakyschizogirl, atta girl, go for the tatoos and make them happy looking!!
Brooke, thank you, that was a one off day, usually I am my sunny self and everything around me brings me happiness, even the rain LOL, and we have plenty of it these last few days. There aren't too many things in this life that can bring me down. Subadiving is one of them tho. Even that I turned around and do snorkeling instead so Ha Ha Ha, take that Wegeners.

[freakyschizogirl]

I will post pics when i get it done Jola57.

I'm happiest in the Summer...when i wake up and the sun is already up, i fly outta bed. Now its getting autumn here and dark in the mornings and makes me wanna crawl back under my duvet!! And dont even get me started on the rain. Sometimes i watch it and want it to stop and other days i'd rather get wet!

[elephant]

Too funny ,"rather get wet." I am glad it is mostly sunny in south carolina. We pray for rain!

[freakyschizogirl]

you can have all the rain from here elephant, i'll take the california sun any day!

[Geoff]

. Even that I turned around and do snorkeling instead so Ha Ha Ha, take that Wegeners.

Go girl!! Love the attitude!

[jola57]

thanks Geoff. Looking forward to picks freakyschizogirl