hi lori
how are you, its been a while, oh my dear friend, im sorry you are down, i wish i could make it better for you,
you are a fab friend also, you have always been there,
thankyou for your kind words,
joelene
Joelene that is the most horrible way for your parents to act.But I know what your going through.Its horrible to be sick anyways. But to have to be sick really sick and deal with mean people is BS that are not only friendes but close famlie members. They attack you. Belive m I wished the way I felt on them afew times not forever like my sentance but for three good mo with no hope o getting better then they can get better. Its the only way they could know.One / ?? where was your husband .Was he with you or were you all alone. Thats awful if he had to work somewhere else and they couldnt support you. Thatjust plain crule. Love you lady. You take care. And stay away from those people. They obviously dont have your best intrest at heart.God bless you.
joelene hossack said:
twana......thats alwful, you should have your family there for support while you go though the bad times, i understand how that feels, i wondered what i had done to mt mother as she never bothered to even see me before mine, even the first one, which was in o8 i got a txt about 11pm at night saying good luck, i was so upsett,
ohhh she visited a few days later, but damage was done, once i was home she never cared or helped, and then for the yrs later i never got help, even i was sooo sick i eventually asked the family for help, my dad came over and got all grumpy at me, and started about why my husband wasnt here, and that he needed to give up his job, sell the house, get on the benefit and look after me, cause i married him, and im no longer their responciblity, i tod him to leave, as he did, i said for once you need to support to us for once while we need help, (this isnt the first time we have needed it) he turned back at me, nose to nose and backed me in my kitchen, and swore and said i was ungrateful and selfish, and that he could hit me fight right now, he walked out, i was left crying, i learnt never to ask for help again,
and my mother never once came over and said dad was wrong,
so then i went for decompression surgery told everyone, my parents didnt even bother getting in touch, at that stage, they were looking at spine at same time, so it was scarey for me, didnt cope with knowing that both could be done.
later the night b4 going into hospital, i txted them and said that "i know you dont like me, but im your daughter and you need to support me, and i love you, and im scared about going into surgery,", dad txt back and said mum will see you in the morning after her walk,
she did pop in, i cried, she called me stupid, i think in a good way, and wanted me to keep her informed, thats the first time she showed any form of love for her child, ME..
poped into the hospital after surgery didnt have spine done afer all, didnt get help once i was home.
in feb i tried to build a bond with mum, i really wanted it badly, shes not easy to deal with,
so i went there, i just got declined home help, and told her, she went on about how my husband needed to up his game, i said yeh right, and then she decided that for the next hr, to down on him, i steered at the wall, until she said thats why she hasnt helped me, as if she did, then he wouldnt, i then question that, and asked, so for the last 4yrs of me being sick and having surgeries you havent helped cause you dont like my husbnd?, she said YES,
i said where did that leave me, she told me i was slfish and thought of just me,
told me to leave the house of she would call the cops, and that pretty much the end of it, i told her i wont be back,
she then said i was no longer part of the family until i buckup my ideas,
she told me she would give me support for i left my husband, we havent spoken since, and dont plan to,
thats pretty much my story,
you should want to support you family not put them out when things so wrong, what is it, with people,
it hurt me, im still having trouble dealing with it, but now i know that all these yrs it wasnt me, on why she wasnt around, it was her, she had the issues, shes the one that misses out, not me,
I have had the feelings your having. My husband was not emotionally there for me( we divorced seven years after my first surgery) but my children keep me going. I always believe this to will pass. I do live on pain medications I would love to get off all this but I do think it is impossible. I had major complications after my surgeries and at times I thought I was better off before having the first one. I take it day by day and try to stay active on my good days. It's kinda hard for me to find the words to say but I do understand what your feeling and your not alone. If you every wanna chat look me up, Best wishes!
twain luckly my husband was there, but not the best of support, but i know its hard for him and it soesnt know how to deal with it, over the last few weeks, he has been beta, its like maybe a light bulb went off in him and he is different, he seems more caring and worried more. he seems interested in how im feeling, strange, ill see how long it lasts,
edock, im sorry that you and your husband feel apart, that must of been hard at that point,
thankyou for understanding, im just trying to figure it out, it takes time,
emotionally its hard, i try so much, but it gets you.
i wrote this the other day
my body and mind may drop when you throw me a bad day, but then i rise up and come up stronger, fighting to become better than what i was before i dropped, you can try to take me down, but in the end i will, come up every time, and beat you back, so bring it on, I CAN TAKE WHAT CAN GIVE ME!.
i then posted it on face book, on the support areas on there, hoping that maybe it might boast, someone up, and in some ways it helped me, but i did feel like that, its my way of trying
Twain................... DX is archnoiditis, i had a adhesive removed, got the surgery summery in the mail,
no wonder my pain is back, im feeling doomed with this now, i would rather ahave been told its cancer, atleast theres treatment plans, or even death to take the pain away, i know thats horrible way to look at it, but reading up on it over the last week, is pleak, how progressive will i get, will i be one of the lucky ones and platue, and be ok with the pain, how can you be ok with pain?
no pain relief will help, cancer pain they call it, that scares me, i mean really scares me, theres even a chance i could end up unable to walk due to the weakness, and somedays thats so bad,
makes you look at your life and think of the future and wonder on everyhing, so far i have managed to take what ever has been thrown at me, but im unsure whether i can manage pain every min of everyday, i already know whats its like, and couldnt imagine it worse, could i really cope with it?
i am also pleased that i now know what is going on with my spine, but man im angry, chiari is enough to deal with,
i feel short changed,
sorry i cant seem to lift the gloom that i have with it, even my husband is walking around with his head low, feeling sorry for me,
thankyou though for making me search at it b4 the results came in, it wasnt such a surprise when i got it, now i have to work the process in my head
joelene
I am sorry to hear the dx. I also suffer from severe pain issues, it is like having a severe.toothach but ove your entire body . I live on pain.meds can’t seem to reduce the dosage crazy way tolive ur thirties Best of luck to you. Praying for you!
how life thankyou edock, this is not how life is meant to be in your thirties, im also in my 30s,
how do you cope? interested in anyways you mange it
I have to say God is mycoping skills. I have a bf that is great for the most part. I had become accustom to not having a supportive person and now I have a veru compassionate giy that eants to be there. I know I push him away at times, when I am in severe pain I do not want him near. I also have two boys that help, my youngest son is ill himself so he can be great company, my other coping way is medication, sometimes it does not work. Ihad a dr tell me I was on to much and it wasmaking things worse, but he isthe one that gave me the pills. I have c-1 to c-3 shaved down in my neck, I also have avp shunt that the tube drains down myneckand empties intomy stomach but the tube pulls tight at times causing more pain in the region. Idid start exercising aboutsix mth ago. I tryand walk each day I have yo make myself. I also began online courses it takes my mind off things. Hopefully I cango back to work at some point. I just recently started to get sll my Chiari symptoms back after doing fairly well forfive years I only had episodes of pain every four months or so. Now the past 3wks have been crazy being dizzy, heart racing & givingme a feeling that it was pounding so hard it felt like it was in my stomach. The numbness is also worse, I have read lately it seems as if people dealing with pain their symptoms have been severe the past couple wks. Maybe the weather is causing it or pressure changes. Thanks for writing, hope ur feeling better today! Eileen
joelene hossack said:
how life thankyou edock, this is not how life is meant to be in your thirties, im also in my 30s,
how do you cope? interested in anyways you mange it