my vent to myself.... dont care if anyone reads or not..

[alexciasmom]

first off just incase anyone trys to read. i am at a life changing blow up point my fuse is lit!! now its lets see how long my fuse is. anythin i say here is my opinyion and how i feel at this second in time and is in now way ment to hurt anyone in any way. my spelling sentence format even thought prosses will be all over and i am not going to put energy into fixing it. so if i happends you were warned.

they say to start at the begining. but the never say begining off what there so much in my mind and heart i just cant seam to grab one and hold on to it long enuff to prosses. i look back at my life and see the same misserbal circles happening over and over and im done. i get told and tell people when there down to look at the posetive espeshaly when its hard to find i know this boy do i no this its one of the few things i absolotly no. i have my daughter and shes the only thing i worrie about the most is her i have had scott talk to me about being suacidle was not in a positive manor and did not make me feel better. i think he just might like to say it who no i dont. he like so as me do you feel like offing your self yet? or im suprised you have not off your self by now. ooo that make me feel so good. i dont think it would make anyone feel good but i am stupid and dont know nothing and dont do say feel or think like i am saposto or right its my emaganation its me making up ****. well i cant say to myself if i am or not i feel and beleve i am not. my i am wrong and stupid. but yep lex if i did not have her honastly being real to myself i would have killed myself by now i tryed and failed before i would not fail this time. the piont is i have her so its only a fleeting thought one in a great wile.

[Alysia]

Hi,
I read.
Im new here so I dont know anything about you.
would you tell more ?
I understand your beautifull daughter is "holding" you around... ?
what are you going through ?

[alexciasmom]

as i walk threw this house getting more sprite with ice sence the only things i can drink besides a coke slurpi makes me throw up. i see how in just 4 days has turne into a mess i cant even or want to try to put into words. as of the 4 days ago i had the house as clean i a can get it now a days its not my clean that i use to do 4 years ago when i got wg my cleaning has gotten alot slower and take my nomal rutin takes three times longer but i can only do what i can do. i think to my self the house was clean home made from scratch stake pot pie, and 6 from scratch angel food cakes made. the mess cleand up scotts and lexs belly full. mine not i dont eat. not because i dont want to but i have no appatite i dont get hungry when i do remember to try to eat i take one maby to bites and there it is the puking feeling. no more food for me, and thats only food i dont have to chew cant for get not sweet or to hot or cold sence one tooth in the top back on one side of my mouth has fallen apart and on the top and bottom of the other in the back is the same. o well its my emagenation so o well i would think thow that after that then getting up with lex getting her off to school then spending the time untill i get her from school running erands and making phone calls and taking grandma for surgery and apptments then up to her house every 4 hr to put drops in her eyes. when 3 days ago i crash mentaly and physacly had not sleeped in 7 days not becuse i dont want to just because this is what my body does to me. i crash and not one thing gets done i am tired of scott hidding in the safe shell of work, sleep, and negativaty, i dont have the energy to try to constanty battle your moods to try to make u feel confadent happy well as happy as you let yourself get to feel suported and nothings wrong. and of trying to be told anything but you are willing to here is not there and i realy am hurt tto find out all these people fam frends what ever dont realy care i am not suprised but am hurt there was me hopping and having fath in some one. scott you allways tell me you cant trust anyone and theres no having fath in anyone or thing they will just let u doun well its finaly suck in your right. but then u new this i am stupind and dont know anything sorry i forgot

[Alysia]

It is too much. not in imagination but in reality. all of it.
and not sleeping is terrible.
I know it is hard to rest when feeling all this... if you succeed it will help I believe
It is good that you are writing...

I must go now , sorry, but when Im back i will read what you write and write back to you.
meanwhile. sending you big hug :hug2:

[alexciasmom]

rite now asking me to describe whats going on is like asking someone to pick up descrip the ins and outs of every peice of sand in the desirt. one instans leeds to another they say thigs in the past are better buryed i dont know how to if they done and want to to constanty say im sorry do things to make up for it emotionaly and by doing things or givving money even if you dont have then you better go give blood if not your a son of a b**** and it just keeps going and going i am futher in dept to them in all ways but i am never doing it the right way its not good enuff. i cant. when they look at me and ask how r u and i say im fine i get in trubble for lieing then i have to do everything to make them feel better because how dare i make them sad or upset. i will try to list some thing to give you an idea'

[mishb]

I am sorry you are feeling like this and sorry that Scott has decided that things are too hard.
It's not fair.
It's not fair that you got stuck with this terrible condition.
It's not fair that you haven't got family to turn too.

What you do have is Lexie.
What you do have is the need to keep going for your grandmother, the need to keep going for Lexie and the need to definately keep going for yourself.

What you also have is US. We (someone, somewhere, in the World) are here for you.


Is it just your teeth making you not be able to eat, or are you in a full blown WG flare?
Are your medications still working the way they should?
When is your next doctor visit?

I wish I was in your part of the world to give you a helping hand, someone to talk to and a big hug.

[alexciasmom]

1. i have not talk to my side of the fam for almost a year because of this and other stuff.
the onlyone i talk to or viset is my grandma larue or rue, lex has larue as a middle name its alexcia larue suzanne dillard.
to this day scott says he hates me and is still pissed at me for putting it any were in there even thow suzanne is his sister who died that he is verry close to. story for another time. you talk to them is gets blown up twisted so ur a pece of crap and more and more as time and people it gos to. you ask them about thay or some lie you catch them in your a pece. and they still dont own up to it or admits it not u have to beleve it or your a pece. but i am sapos to tell truth and agree to everything even if its them lieing to someone else. you have more or better things or life going good u have to give it and more to them sore there life and stuff is better than the jones. everyone even my so called husband i feel are acting like i need to be or act like i was before i got wgs even better then i am a pece. then they tell me to let them know if i need anything so when i ask and now for a year have even scream it to the hell i have cryed and begged for help. and nope nothing no anserws no help. the docs are no help theres no saport group around here i have looked till my fingers were blistered from calling and thats just the calling part but nope theres not. cant see a therapest it cost money. i have two friends i am not related to by blood or marradge and one first thing she jumps to and is her insested answer is get devorced well there a biger prob that just him, the other is my sister in law i was the bff with hes her boyfriend so thats out. thats why i decided to vent here and dont care if anyone reads or not. and truly thank you for taking time out of your life and doing so. ty

[alexciasmom]

what truly crapy is everone is constaly jumpimg on the speep yes its true sleep is needed and good as long as like scott your not hiding in it. but when i do get good restfull sleep i still feel this yas humm dont no i have no ansers. the docs say blood work and all looks good. now they do want me to were o2 at night, but i have to redo test they finaly got my results after almost 2 years, another long story that led me here but for another time. so if they were resent the plan would be o2 at night and see pulmonolagest and get lung test dont there fear is wg related lung crap. but the results are not currant so wating to hear from docs. when i found this out i dreded telling scott but i did and he threw a fit not going into right now. but man it so made me feel good they need to bottle that stuff and sale it. i hurt all over, but i cant seem to ged my meds down all i am sapos to take in a day let alone at right times, when i can my body not as bad. the docs say it sucks but to early to try another iv.

[alexciasmom]

now as for grandma yes i have her and my heart bleeds for her, one of the many reasons i am not talking to my side is they have sat here and done nothing to help. debbie the woman who says she gave birth to and loves, but she says as they all do that they love rue. rues 89. they use all her ssi to pay bills, branch to so many other storys. well they let her agin sit a week without all the proper meds they cant make a phone call to fix, but aslo a week with out her potty under were. she has needed hearing aids, and glasses to get glasses she needs catoracs surg, both eyes. all this she needs for 15 years and they do do nothing but all are liveing with and off her and in with her from now back till they were born. so i get fed up and get a car that ac and heat works. get her in car and in two months got meds, most of past and present med bills fixed, two hearing aids, and one eye done. monday we do other. shes 89 has lost both her houses. and all of her belongings are in a storage shed in another state for 3 or 4 years now. debbie got a car, man so many storys. and in the two months she had it took granma out side twice. now car gone, but gma and i get out even if scott is mad and so one over me spending for luch for her and i. but the gas.. humm more storys. well i dont call what debbie calls love, love but then i am stupid and its my emagenation

[Alysia]

Hi,
you are taking care of your daughter and grandma, so well. and you deserve to have someone who will take care of you, with love and sesitivity and respect...
Im sending you my caring with hope for better days.
continue to write. i believe it is good.

[JeanMarie]

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.

[marylz]

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!!!

[annekat]

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:

[marta]

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 (http://www.aahd.us/2012/03/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.

[annekat]

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.

[alexciasmom]

[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 (http://www.aahd.us/2012/03/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...

[alexciasmom]

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.

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!!!

[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.

[Alysia]

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.

[Barbara N]

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

[annekat]

Barbara, it's so sad to read about what your brothers did to you. I see that here and there, people seeming good, well-meaning, and easy to get along with, and then they just shut down that part of them for selfish reasons. And they won't go back because they can't admit they were wrong. I think it must take a toll on them, too. I'm so glad you have your kids and grandkids to even things out. And now you have us, too!

DeDe, I'm still thinking of you in all of this; you may be coping better now, but changes never happen overnight. Please keep us posted on how things are going!

[Barbara N]

Thanks for your concern, I have finally learned to let it go or it would have eaten me up. We were a very close family growing up and I know my parents would be horrified if they knew. It is amazing, and I have seen it over and over, how money can change people into monsters. I figure that they must feel bad about what they have done and that is why they are afraid to see me. Then I realize that they don't feel anything or they would have stopped threatening us and trying to ruin our lives. So now my family starts with my husband and me and works down to my grandchildren. We have three great children and four grandchildren and a bunch of animals. I do admit that that money would have gone a long way to help me get medical help but they don't care.

[annekat]

I do admire you for being able to let it go. That kind of stress is the last thing a person with Wegener's needs. I'm glad you are surrounded by your husband, children, grandchildren, and all those animals. That must make it a lot easier to forget the wrongs done to you and take joy in your current life.

[Barbara N]

It took me < year or two to let go because it was wrong what they did and I haven't told the half of it. I still don't know how family can turn on you so fast just over inheritance. My children and riding have made me change my whole way of thinking, it was hard at first but then I realised that i couldn't do anything about it so just let it go and I no longer need to take anti-depressants or anxiety pills. That is a big plus and I am a much happier person. My husband is having a much harder time letting it go because they beat him up, threatened me and left my children out of what my parents wanted them to have. My brothers don't even have families or wives to give it to. My older brother has been sick all of his life and I was always the one to go with him, talk to the doctors, find him specialists and now he won-t help me when I need it. It is seeing my husband hurt that makes it hard for me because he is doing everything to make sure I am happy. Well, on to happier subjects. No use crying over spilt milk.

[alexciasmom]

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.

AHH thanks hun!! i would love to travel. i have never been on a plane. guess that one goes on the bucket list. yeah this site ROCKS!!!

[alexciasmom]

how can i put this? its not better but scotts family talked to him, and so did mine!! that's a another story. so then he was good at helping around house and made two dr appts but now hes drifing back. i am tomorrow i am making the appts for a therapist. but i dont know. to be honest i dont know if it will help. he has changed so much over the last three years. i would not even know were to start to describe it. but he thinks he has not. that its all me, and my mind!! i really dont think therapy will help. i dont know what to think.

[alexciasmom]

ok lets see i am going to give you guys 4 examples of different times scott upset me, and why it upset me. but i will try to shorten the story. lets see if i am the only one who would get upset or not.

1. its not the gift its the thought that counts, but really how much thought is this.... he goes shopping for the gifts on xmas eve, spend all day of my bday shopping, or complain about Easter being for the stores to sale stuff and we should not even celebrate it.. then when you get your gift its anything on sale, or its pink becuse he let lex pick it out. fyi pink is the color i hate the most!!! in 13 years, i have never gotten a gift over 100$ and i have spent 600 to 1500 on him for almost every bday and xmas. never gotten a real piece of jewelry, well he got our wedding rings they were like 500$ for all three. i would like a real good quality piece of jewelry. is that so bad? he has never sent me flowers at work, he will like once a year bring me home a clearance single rose for me and for lex.

2.

[alexciasmom]

2. you all know how hard it is to get going in the morns. between meds and symtoms. i dont know what it is but i just cant get going before 8am and gets up for school at 7am. my sleep is all over the place. i am seeing a pulmanolagest to see whats going on. he works from 4pm to 130am to 330am. then he stays up to 5am playing games and does londrey but piles it on floor not put them away!! and gets mad at me if he has to take time from 730v am to 830 am to get lex of to school but shes 7 and he only gets her up with 30 min to get ready he no helps and yell at her to get dressed, she never gets teeth brushed but then he yells at me for her getting cavities, then she no gets all her meds, hair brushed, face washed. what the crap. there's to many reasons why i am upset about this to write. but yeah please tell me your thoughts.

[alexciasmom]

i guess that was 2. and 3. so heres 4.

4. the methotraxate has me sick, anything made me throw up, i hurt, and a bunch of other symptoms acting up. had not sleped in three days. and he wants a home made dinner so i cook one. then he has lex help him tell me that a mommy treat sounds good. but not just cookies they want toffee. so feel like crap cooking food that the smell is making me worse. cooking food im not even going to eat. now mind you some times and he knows this my hearing goes funny and i cant hear well, then i in kitchen he in front room, i have raidio on, and doing dishes. he yells something. i say what im sorry i cant hear you and he says well god i was going to tell you, that your cutie when your cooking but now its pointless. and this is sapos to be a complament??

[annekat]

It sounds like some of the things a lot of women might complain about regarding their men, but with the Wegener's thrown in, it becomes more and more intolerable. I live by myself with Wegener's, and sometimes wish I had someone here to help me with things, but at the same time I'm glad I have no one constantly making demands on me, or saying and doing things that might make me feel disregarded and belittled. On the other hand, it sounds like Scott has been trying and does love you. I know you are feeling that therapy won't help, but I think you should wait and see, and give it a chance. You might not see improvement overnight. But therapists are trained to help you figure out how to stand up for yourself and work through your feelings of resentment. I wish you all the luck in the world with that.

[alexciasmom]

2. you all know how hard it is to get going in the morns. between meds and symtoms. i dont know what it is but i just cant get going before 8am and gets up for school at 7am. my sleep is all over the place. i am seeing a pulmanolagest to see whats going on. he works from 4pm to 130am to 330am. then he stays up to 5am playing games and does londrey but piles it on floor not put them away!! and gets mad at me if he has to take time from 730v am to 830 am to get lex of to school but shes 7 and he only gets her up with 30 min to get ready he no helps and yell at her to get dressed, she never gets teeth brushed but then he yells at me for her getting cavities, then she no gets all her meds, hair brushed, face washed. what the crap. there's to many reasons why i am upset about this to write. but yeah please tell me your thoughts.

o yeah i forgot to put my point down, so he gets mad at me if i cant get up with lex all 5 days a week.

[Dirty Don]

He needs to grow up and become a parent and spouse, you need therapy and a stronger will, and Lexie needs 2 parents who can and will cope with the crap in life...c'mon...not the kid's fault and she's taking the brunt of all of it & will pay dearly further on in her life...not sorry, MY vent...

[annekat]

Don has some good points. Scott COULD come home from work and go right to bed, NOT stay up playing games and doing laundry, so that he can get up when his daughter needs him to see her off to school. Then he can go back to bed. With his work schedule, he sees precious little of her, and she needs more than that from him.

[drz]

So what would happen if you were in the hospital or a similar place and not there to care for her? Would he do it? Can he take care of her?

[Alysia]

Hi dede,
maybe he cannot understand what you are going through and how difficult it is. one who doesnt have WG, doesnt know really what it feels like.
are you both going to therapy or only you ?
if it is only you going, it is o.k. you need a place for yourself. someone to care for you. to listen, think together, support, contain, feel for you and with you.
Im going to therapy about 20 years (with 4 years break) and i cannot imagine my life without it. psychotherapy for the soul is like sport for the body.

[Stephene]

i am so sorry to hear u are going thru all this with the wg.I have been going thru similar depression the past 3 days which is why i havent been on here.I got upset and dumped all my prednisone in a glass of water and told my hubby I was done with the fight.I just gave up. I am fortunate enough to have a husband who cares and he scattered the house trying to find some prednisone while i was sleeping.When i woke he had me take my meds.I went from 60 mg a day than 0 than the next day i took 30 . believe me my emotions are anywhere but normal still. I slept 30 hrs and woke up today feeling a little better but in no way am i emotionally stable yet.like u my upper back wisdom is falling apart and i sat at the dentist almost 3 hrs than got angry when they called others behind me and i walked out.So i am still suffering with a bad wisdom tooth as well.at the dentist a lady i know seen me and " oh my god stephene what happend to u? really...what happened to u? u look like a racoon" that hurt so bad. i had a strong desire to live and didnt care how much weight i gained but after 30 lbs in 2 weeks and the remark hit me hard. I started giving up.And my 9 yr old said mom what are all those dots on your face? he said it because he was worried.It was the acne from the prednisone. i have never had issues with acne.I have had gorgous skin my entire life.I am so torn today. my streangth is falling apart.I cant prdict one minute from the next if im gonna cry or throw something. i am trying to sit here and not think of it all but prednisone is really messing my life up.I am venting too. sorry. but just keep ur head up and u will get thru this.WE can get thru this :) a big hug to you.

[annekat]

I'm sorry you are feeling this way, Stephene, my fellow Washingtonian. It sounds like the prednisone doesn't agree with you much, but your docs know what they are doing, you will feel better, and may even get used to it, and will be able to reduce the dose before you know it. I'm glad you have an understanding husband who will scour the house for your meds! He sounds great. I guess you know now that stopping the pred like that is worse than taking it. You should allow yourself to cry and be alone and sleep as much as you want, if that is a luxury you can afford! I know it must be harder when there are others you must think about... for me, I could just be a hermit during that time, and it was great. I know it's hard to take people's insensitive and rude comments. I guess you need to develop a tactic for that.... trying to explain your illness may not help much... perhaps just better to give a brief answer, or none at all, and not get too engaged. I'm still learning these things, too. Keep in mind that you are in the hardest part of having WG, and it will get much better! Feel free to PM me if you need to vent some more or ask specific questions; not that I'm an expert, but it's been 2 years since starting my treatment and I can share my overview of how it's gone for me. Keep the faith!

[Stephene]

ty annekat. the feeling of giving up is the worst.Im fine one minute and crying the next.Been on high dose prednisone for couple months and was fine but little things with my older kids have stressed me out and broke me down. Having an adult child living at home and bearing me down with extra emotional stress is not needed and i asked her to leave but i think she is laughing it off and not going to do it.She has been a great helper with cooking and cleaning and helping with the younger ones but can be very cruel to me with her words.and that stress i dont need. i do spend almost every day in bed unless i have apptments.I havent finished the rituxun yet and i hope i get remission soon with it. ty again

[Alysia]

Dear Stephene.
I hope you will start feeling better soon.
dont allow your daughter to speek unkindely to you.
sending you a hug and hope for better days. :hug2:
when it is too much, please write. it helps.

[alexciasmom]

well scott and lex doing better, but my side and his side just dont even call or come over to see how i am doing. i can harld use computer, do crafts, my hands hurt to bad. i dont feel like myself, i am not even a person any more. theres just to much to type. i been missing dr appt. and not taking meds like i am sapos to. i dont even care about going to drs. and no one else cares eather. i was sapos to make like 4 dr appts two months ago and still havent. i dont care about my garden, it can die for all i care any more. i the past three months i been tracking texts, phone calls and people comming over, it only happends when someone wants something from me. so i deleted my face book and email account. i dont need them no one wants to talk to me. i know i have done some bad stuff growing up. but do i realy deserve going threw all this alone? guess i must. its true what they say... when you laugh the world laughs with you and when u cry you cry alone. and thats how i feel alone. depressed, tired, feel like crap, and ticked of at the world....

[pberggren1]

First of all, you are a human. And we care. God cares as well, but at times it may not seem like that. You are not alone. You have us and your wonderful daughter. Please message me hun.

[annekat]

I am so sorry you are going through these things, DeDe. I noticed you cancelled your FB account. I hope this is only a low spot and things will get better soon.

You know, I've been remiss on some doctor's appts., too, not Wegs stuff, but like my yearly physical, dental checkups, things like that. I'm feeling pretty good but things are still a struggle, and depression can really get us down. Having such unsupportive families, both you and Scott, is really bad. I don't understand hpw they can care so little and not offer their support. Obviously, they don't understand, but that is not a good reason. I guess you will have to develop other support networks, such as friends, and us here on the forum. I think someone on here suggested counseling.... that would be a good thing, if you could swing it and would keep the appointment.. I understand your resistance to that, as I am the same way, not that I wouldn't do it, but I don't expend the energy to make the first move. A doc could prescribe an antidepressant... I was taking a lowish dose of Zoloft, and I think it helped, but now the script has run out and I need to see that doc.... I don't think it is a heavy hitter like Prozac, which might be a good thing.... I'm getting by without it OK for now. Not going thru as much crap as you are. Well, I will be thinking of you, and feel free to vent on here as much as you want, or to PM me or probably some others on here for a private vent.

You know, I keep thinking about the fact that you are in Salt Lake City and wondering if you are getting treated there at the vasculitis center at U of Utah. There has been so much positive stuff on here about Dr. Koening. You are lucky to be in a position to take advantage of that.

Above all, I know it is sometimes easy not to care anymore, but start caring, especially about yourself, because you are worth it! I know you are doing a good job with Lexie and are a good wife to Scott, so focus some of that on yourself, too. And try to get out there in the garden before it is overtaken by weeds.... it could be therapeutic, and Lexie can help you. Best wishes for feeling better!

[Alysia]

Hi dede. Im sorry for you. All that sorrow. Please give yourself good things. Im sending you big hug. We are here to support you. Take care.

[Debbie C]

Dede...You need to sit back and take a deep breathe and get a grip on things. You have alexcia that needs her mom to be around and I'm sure she loves you rather you are sick or not. It sounds like not taking your meds has put you in a bad spot and you NEED to get in touch with your drs, get back on your meds,maybe get something for your depression because you are the only one that can snap yourself out of this funk you are in. If you don't do it for yourself ....do it for your daughter. We are all here for you when you need to vent and will talk to you anytime but we aren't there to help you, you HAVE to do it. Maybe if you go to the hosp. for a few days they can get your meds straight and maybe that can turn things around for you and you'll start feeling better. Never think you are going thru this alone.:hug2:

[Barbara N]

Hi Dede,when you feel like the world is against you that is the time you have to be strong and think positive and do things that you enjoy. Take your daughter somewhere fun so you can both have a good time together. I know when I was down my daughter came and said I want my mother back that really shook me, and they took me to the hospital where I had a complete exam and had all my meds changed and I saw a psychiatrist and it really helped. I have been a different person ever since. >I no longer hide in the house or feel sorry for myself. I don't care what other people think I do what I want and have fun with the kids and I have a hobby, my horse,. It is important to have a hobby, something you really enjoy doing and do it. Take a yoga class or something where you will meet other people and start a new group of friends. You are a strong person and this is just a glitch in your system and you can fix it your self. We are all with you and will help how we can.

[alexciasmom]

ihave been taking m meds for two weeks now. but i still hurt every were. my dr is sending my info to dr k, at u. just have to wate to see if he will see me. my inlaws who up intill a year ago would help me. but now pops is getting alshimers and now they want me to go help them? i cant even walk to potty without terabal pain in feet. all i wanna do is sleep. i do play and everything with lex but other than that i just dont care. my sister in law stold my meds, she stold my wedding ring and had it melted down for money. my mom will not even say sorry to me to talk to me. wow she cares. ok to tell you how f ed up my fam is my sis had s## with her daughters boy friend. why there dating. i love my in laws but there to in volded with them selfs and tell me a 20 min drive on free way is to much to drive. i dont know what to do..

[pberggren1]

Just keep talking about it with us hun.

[Alysia]

They want from you but give nothing. You are such a good person. You deserve to get all the love and support. I hope you can find someone who will be there for you. Meantime we are here for you. Tou are not alone. :hug2::hug2::hug2:

[annekat]

DeDe, it is great that your doc sent your info to Dr. Koening at U of Utah. If Wegeners is what's causing your pain and fatigue, and I'm assuming it is, then I can't imagine any reason he wouldn't see you. Even if there's a problem with insurance, maybe he could work you in somehow. You are right there in town, and it seems ridiculous that you wouldn't get to take advantage of his expertise! Or your doc could at least consult with him, or some other vasculitis specialist on the VF list, about your case. Best of luck, and don't let the toxic family members get you down, just avoid them as much as possible. Easier said than done, I know. And like Phil says, keep talking to us.

[alexciasmom]

ok so i am not talking to anyone i am blood related to except my gma rue, and one sister kristy who i was hert by. but she said sorry so we are talking and seeing each other but she lives 1hr and 1/2 away. past strawberry resavor. and there is so much drama on that side. so that leaves my inlaws. they have only once came by to help. and now they want me to come over twice a week to help them?? o ok let me just do that. right!!! what ever. my so called friends all disapeard when i got sick. so i have no one to vent to in person. i hardly use comp. it huert my fingers my ra is running rampid threw my body. and yes i am still in a poor pick on me mood. and my hubbie who has allways been a grouch, told me that hes tired of my bad mood. so i told him now you know what i have lived with the past 13 years. ugg men some times

[alexciasmom]

i did get out today and lex and i rode our bike to see despicable me 2. and rode back it as so fun. she still dont know how to ride a bike without training wheels. so i bought her a trail bike its a bike that hooks to mine and makes a dubble bike. i will get a pic on here for ya its so cool.

[Alysia]

Hi dede.
no wonder you have bad mood with all of this...
you have us to vent as much as you want.
I also saw "Despicable me 2" last week with my son. i love it. I wish we could have "transformed" the "bad purple" people in your life to "good yellow" like in the movie...
how old is your daughter ?

[Debbie C]

Dede, I am so glad you and your daughter got out ( I bet she enjoyed it also ) You definately need to take more times like those and enjoy your time together.

[marylz]

Glad you had fun with your daughter today! She is such a cutie!

[alexciasmom]

she is &. how old is your son? and well a name

[alexciasmom]

Hi and thank you all so much for you kind words and thoughts. i been thinking about you all alot more lately. even if i dont wright on a post i do read alot of them almost every day, i can read them on my phone but will not let me post. ugg,, So i finaly got time to sit on the computer.. and the past month is been more and more, Lex and i out doing stuff. or around the house as well. not as much in bed. complaining to myself and my poor spouce. whos been wonderfull the last month. who has on top of everything from normal to our not normal life. has had to put up with his family now acting nuts like mine. :ohmy: long drama and a few bad nights for scott, and some for myself as well. but short story is scotts dad who is the best dad, gpapa, any kid wuld want. he always puts and has put others before him. and well no matter how i say it it just dont seam enuff. so let me try to put it another way. before scotts dad i has hated not just disliked, i hated the lds religon and most of them i have ever met. it was one of those bad taste in mouth kinda things. now mind you i was as a kid lds. (another story).
but over the years i have grown to love papa more than my oun dad. papa is the reason i have fath back in the lds religon and in some of its people and no more byist anymore. becouse of papa he gave that back to me. no matter how hard my mom inlaw tries i still not lds anymore. but its all good to be difrent i say. its funny they go for byu cuz of tey allway have liked them and scotts cousin used to play for them now he plays for the stillers. but at game night i allways vote for the other team and tease them about it like i mean it. it ticks emm off its so funny/ and they know i do it to them. i hate football.. oooo and speaking of football. on our bike set up we got to park and she has flag football three times a week. so its something for now to motavate me. she had there first of game today shes on the packers team. and they WON TODAY!!! 5-3 and she ran half one touchdown all herself!!!!

[alexciasmom]

so went to dr today. and we changed a bunch of meds and i got some cut out the last wile and such, so now its.
oxy 10 mg up to 2xd
pirk 5mg up to 3xd
lavoxil 125mg 1xd
gabbapentenmg 300 3xd
cymbalta 90 mg 1xd
ramipril ? 1xd
sorry going of head.
some female tesotarone chewy
folic acid
1xs vite
metho 6 1d/w
i think thats it so i got 6 cut out over the last 4 months yeah.
but i forgot to ask her about my foot. anyone know what this might be? and yes i am getting in to see her for it. but my left foot to sum it up. looks and feel the bone and it feels to me like my middle, ring, and index toe have shrunk the middle the most. and there shrunk curls under. my bones were toes meet first foot bone. there curling up like a U, so the base bone right in the middle of the pad right below and on each side of middle matching shrunk toes. that bone pokes out more and hurts. that tendond in thoes joints from top and bottom of foot hurt feel numb, and burn. on and off. ???? any ideas???

[alexciasmom]

so about papa well he went nuts we just say. dr no have idea yet y. but he has to be placed in a home. and my inlaws are just throwing him under the bus. so i am not calling them all the time. scotts mad as well. but if they call me i will talk to them but i will not over suger coat my feelings. so its not like with my side were i am not talking at all to most. but some ove you might has seen i closed my fb account, i have done this allot of things in my life. i am trying to just figure out what is not realy needed like 6 email accounts, what can be condensed like getting rid of fb cus some of you i talk to here. and some from fb i text and the rest i dont need to know that much about there life that i take time away from lex. so i am just re focus life. :w00t: thanks in a lot of help to YALL!!!!

[mishb]

Wow, I'm glad you are getting things sorted and that Scott has come around to your way of thinking.

Not sure about your football comment though - I love football, but not the American version .....Aussie Rules (AFL) is the best :flapper:

I'm sorry to hear about Scott's dad - that's a very sad thing to happen.

I miss seeing your artwork on fb but can understand that you need to set priorities and Lexi is a big one of them. The bike you made sounds super cool and now you and Lexi can get out and about more.

Take care and I hope things start to get much better now that you are off some of those medications and starting to enjoy life.

[annekat]

I agree with everything Michelle said... except I also hate football; of course if I was familiar with the Aussie version, I might like it more!

No one can tell you how to address religion in your life.... that is a personal thing. It is not supposed to be divisive among people and family members, and if it is, they are doing something wrong. I would ignore that whole issue as much as possible and just keep doing what you are doing, keep finding cool things to do with Lexie and enjoy your home life with your supportive husband. I, too, am sorry about his dad.

[Alysia]

she is &. how old is your son? and well a name

I understand your daughter is 7. my little son is 8. Ido.
Im glad things are getting better for you and that you are having quality time with your daughter. she looks very sweet.

[Linda22]

Hi Dede
I understand what you are feeling even though I have not got WG myself but I know what it is like to feel so alone!!!!! What I have learnt through my tragedy is to take it day by day, I never think about what tomorrow holds but only the moment now. If it was not for that and my other 4 children I honestly don't know what would of happened to me by now. You have joined a fantastic support group with so many people that care. I am wishing you all the best in trying to handle this disease and things will get better, I know it is hard but just try and think positive thoughts

Lots of Love
Linda