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

  1. #31
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    Quote Originally Posted by alexciasmom View Post
    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.
    "My daughter is closer to me than my skin.. she is the arteries to my heart.. she is my life line.. The reason I breathe.."

  2. #32
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    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...
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. #33
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    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.
    Anne, dx'ed April 2011

  4. #34
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    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?

  5. #35
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    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.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  6. #36
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    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.

  7. #37
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    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!
    Anne, dx'ed April 2011

  8. #38
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    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

  9. #39
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    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.
    when it is too much, please write. it helps.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  10. #40
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    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....
    "My daughter is closer to me than my skin.. she is the arteries to my heart.. she is my life line.. The reason I breathe.."

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