I am so sorry you are going through this--you are doing such a great job taking care of your daughter &, grandma. You deserve better--keep writing, so many of us care & we want to listen to you. I wish there was a way to help.
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I am so sorry you are going through this--you are doing such a great job taking care of your daughter &, grandma. You deserve better--keep writing, so many of us care & we want to listen to you. I wish there was a way to help.
Hi,
I am sorry you are feeling this way and that you are going through such a rough time. Your daughter is beautiful and she needs you so much. Please continue to "vent" because that is what this forum is for. Many of us feel many of the same emotions and can help support you. HUGS!!!
Lexie's Mom: I am so glad you feel free to get on here and vent the way you are doing. We will never be judgemental of your spelling or anything you say. I think you said a couple of times that you are stupid, but no, I don't think you are at all. You are just completely overwhelmed by all the health and family issues that are getting you down. It's clear that most of the people around you are not helping with their attitudes. This can be so very depressing, when you never asked to be sick or to have all these problems heaped on you.
I see that you are in Salt Lake City. I know there is a major vasculitis center there at the University of Utah, and i hope you are seeing the doctors there. If you are, and you are not satisfied with your progress, then I am very sorry and wish I knew what to suggest. Perhaps you could also use a good counselor who specializes in chronic diseases. As for support from fellow Weggies, I remember a guy from SLC posting on here a few months ago, just don't remember his name. You might look on the Weggie map at top of this page and see if there is anyone near you who has placed a pin.
In the meantime, I'd suggest you keep posting here and little by little you'll blow off the steam and we'll get a better idea of exactly what you are going through. Best wishes and hugs to you. :hug2:
Lexie's Momma. My heart goes out to you and the horrible vortex you seem to be in right now. I wish I could fly by and scoop you and Lexie and gramma and bring you here.
I agree with everyone on here that writing it out is very good for the brain. I have found that unless you get to vocalize or write the problems down, they tend to swirl and swirl and swirl until they become such a huge tornado that it's impossible to deal with it, whereas if you get it out, your brain starts to find solutions to the numerous problems one by one by one.
I'm glad that you have Lexie and your grams to keep you grounded and focused on the task at hand - living a strong, productive life and raising a solid girl into a solid woman. It sounds to me that you're surrounded by a lot of people who enjoy creating drama in their lives and are completely self absorbed. You can't be responsible for the goofy decisions they make in their lives, but you can be responsible for the decisions you make in yours. Keep looking for support. Anne mentioned a good possibility, also ask your doc next time you see him/her if he wouldn't mind passing your name along to some of his other patients dealing with WG to contact you. I know he won't be able to give you their contacts, but he/she can pass your info to them with your permission and they can decide whether to contact you. I'm sure you've checked all of this out, but in case things are too busy and you missed it here's a page that might lead you in the right direction: Utah: Health & Disability Programs Also, I don't think you should try and keep it to Wegener's support only. Since I started focusing on Autoimmune Disease and finding the common thread for it, I have found that it's mind blowing how similar our paths are with other people dealing with autoimmune disease. I've also just checked on Google for "Rare Disease Support Groups" - I think that we all go through similar experiences despite the name of our diseases. Check it out or if you'd like I can do some research for you. Just let me know.
Try to distance yourself from the drama. Focus on why you can't sleep and how you can keep your food and your meds down. Take care of your health, and gain energy to get stronger. Take care of your daughter and your granny and do whatever you can to distance yourself from the negative and focus on the things that make you feel alive, and human and give you joy. I know it's easier to say than to do, but I think it's an essential first step to getting better. Screw the housecleaning. Screw trying to make a person who is intent on being sour happy by making him complicated meals that use up your precious little energy. Your daughter wont care if the house is messy or spotless, but she will care about spending quality time with her beloved momma, so focus on that. Don't ask the people who are drama hounds for help, just do less and choose what you're doing carefully so that it's the stuff that will make you better and show your daughter the right way to live. Do the bare minimum while optimizing the results. If you ever need a vent you can send me your phone number by private message and we can talk. I'll call you - I have that North American plan, so we can talk at nauseum.
You are not doing anything wrong. Nothing!!!! Don't let anyone make you feel like you are because you got dealt a stupid disease. Never, ever let them make you feel that way. They obviously have their own issues of insecurity and low self worth to be making you feel that way. You are so much better than all of that nonsense. I hope that you know that and you don't give them the power to make you feel otherwise.
I'm sending you strength and power and energy to be the best that you can be, to be the healthy strong woman you were before WG and never ever ever think you're stupid for feeling this way. It seems to me that you're by far the smartest, kindest and most noble of the bunch you're surrounded by.
That is great advice from Marta. The only thing that just popped into my head to add is, I hope you can get back to those cool craft projects you were doing awhile back... the birdhouses, Halloween things, rugs, and so much more! They were delightful, and you seemed so happy when doing them.
[QUOTE=marta;67358]Lexie's Momma. My heart goes out to you and the horrible vortex you seem to be in right now. I wish I could fly by and scoop you and Lexie and gramma and bring you here.
I agree with everyone on here that writing it out is very good for the brain. I have found that unless you get to vocalize or write the problems down, they tend to swirl and swirl and swirl until they become such a huge tornado that it's impossible to deal with it, whereas if you get it out, your brain starts to find solutions to the numerous problems one by one by one.
I'm glad that you have Lexie and your grams to keep you grounded and focused on the task at hand - living a strong, productive life and raising a solid girl into a solid woman. It sounds to me that you're surrounded by a lot of people who enjoy creating drama in their lives and are completely self absorbed. You can't be responsible for the goofy decisions they make in their lives, but you can be responsible for the decisions you make in yours. Keep looking for support. Anne mentioned a good possibility, also ask your doc next time you see him/her if he wouldn't mind passing your name along to some of his other patients dealing with WG to contact you. I know he won't be able to give you their contacts, but he/she can pass your info to them with your permission and they can decide whether to contact you. I'm sure you've checked all of this out, but in case things are too busy and you missed it here's a page that might lead you in the right direction: Utah: Health & Disability Programs Also, I don't think you should try and keep it to Wegener's support only. Since I started focusing on Autoimmune Disease and finding the common thread for it, I have found that it's mind blowing how similar our paths are with other people dealing with autoimmune disease. I've also just checked on Google for "Rare Disease Support Groups" - I think that we all go through similar experiences despite the name of our diseases. Check it out or if you'd like I can do some research for you. Just let me know.
Try to distance yourself from the drama. Focus on why you can't sleep and how you can keep your food and your meds down. Take care of your health, and gain energy to get stronger. Take care of your daughter and your granny and do whatever you can to distance yourself from the negative and focus on the things that make you feel alive, and human and give you joy. I know it's easier to say than to do, but I think it's an essential first step to getting better. Screw the housecleaning. Screw trying to make a person who is intent on being sour happy by making him complicated meals that use up your precious little energy. Your daughter wont care if the house is messy or spotless, but she will care about spending quality time with her beloved momma, so focus on that. Don't ask the people who are drama hounds for help, just do less and choose what you're doing carefully so that it's the stuff that will make you better and show your daughter the right way to live. Do the bare minimum while optimizing the results. If you ever need a vent you can send me your phone number by private message and we can talk. I'll call you - I have that North American plan, so we can talk at nauseum.
You are not doing anything wrong. Nothing!!!! Don't let anyone make you feel like you are because you got dealt a stupid disease. Never, ever let them make you feel that way. They obviously have their own issues of insecurity and low self worth to be making you feel that way. You are so much better than all of that nonsense. I hope that you know that and you don't give them the power to make you feel otherwise.
I'm sending you strength and power and energy to be the best that you can be, to be the healthy strong woman you were before WG and never ever ever think you're stupid for feeling this way. It seems to me that you're by far the smartest, kindest and most noble of the bunch you're surrounded by.[/QUOTE
thank you!! and thank all of you!! all of you and my mother inlaw have helped so much. i dont know why all this just blew up my mind and heart. the drama with my blood line has been there sence i was born, and porob till i die, thats why i am still not talking to them. they dont like it and im a b**** for not talking to them. like i am the one who set up and took gma to all the appt for her eyes, and pharmacy, plus got both serg approved threw both ins. and fixed her food stamps agin. and fixed all her back medical billing,, and paying 2200. out of my own pocket for her hearing aids. but becuse i was not able to go down to her house every 4 hr to put in her drops i am a b**** but thats them i could go on for ever about them. it herts more than im mad. but o well. im just happy gma as of today both eyes are done she got the left eye done today and it went great. tomarrow she goes on for a check. but now for what ever time she has left. she can see and hear lex and maby in joy life better. she was so depressed she was saying she could not wate to die. so now maby she will not feel this way. i could have cryed the other day. i took her and my father in law who i love as my own dad. we all went to lunch. and gma looked at me all happy with tears in her eyes and said.. o my gosh i can read that sign across the room. she was so happy. that right there makes it all worth it!!!! lex is good her bday comming up and she gets surg on her belly on the 18th. for a umbilacal hurnea. but thatnk you all so much.. if you or anyone wants to be friends on facebook look me up. dede dillard.. sorry my tiping is crapy with numb fingers. lol...
ahh thanks its nice to know some one enjoys looking at them. i got a bunch more made. you can see some on my facebook. or my other fb page. dragonbabycrafts on fb. when i get a chance i will put some more pics up. yes i love making crafts and gardening i just do as much as i can. scott has agreed to go to counsaling with me YEAHH,, and my mother in law and well hes whole family kinda ganged together to try to help. i gess they did not relize how bad i felt and how overwhelmed i felt. so thank goodness for all you and them. or i would have lost it over the past few days. i so wish we all were so much closer so we could start our own group. lets all move to some were tropical and sit and talk on the beach. and have a round of drinks i will have a virgin margarita!!!Quote:
Originally Posted by annekat
Dede, I will look you up on Facebook. I'm Anne Wellings, and will make a friend request if I find you. You sound so much better now. I'm so glad Scott has agreed to go with you for counseling. A lot of people would refuse to do that. You are taking such good care of your grandma, and you deserve more recognition for that. I wish we lived closer, too. I'm in Olympia, Washington, and believe it or not, the vasculitis center at U of Utah, SLC, might be the closest one for me, the other would be in San Francisco. So if I ever go there, I can look you up, and I have some old family friends there, too, whom I haven't seen for ages. Right now it's a pie-in-the-sky idea, as I can't afford to go anywhere, nor do I have the time. Next time you feel that down and overwhelmed, don't wait until it's built up so much, get on the forum right away! We are here for you.
Hi dede,
Im happy to find that things are getting better for you.
you touches my heart and others' heart here.
Im sending you my love and my caring.
I live far away from you, in Israel. if you travell someday...
(i dont have facebook)
martha and anne and everybody here,
I feel lucky to be here with you all, so caring and kind and supportive.
it is a good place here. real. compassionate.
the best.
thanks.
I think it is great that you are writing, you need to get out those feelings. don't worry about cleaning the house, it will still be there tomorrow. I feel for you about family and people you trusted not being there for you. Once my mother died my brothers took all of the money and haven't spoken to me since.I thought we were a really close family, but I guess not. I also have my children and grandchildren that help keep me grounded. They help make you re-think things when you are feeling like life is hopeless. I am also new to this group, but so far every one on here has been so kind and helpful, people you can really talk to and they will listen and answer you. Take care of your self and your daughter, maybe try and do something fun for a change. Even if it is just for a short time, like have a picnic. A huge hug, Barbara