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beautifullybroken99
Female, 28, Big Stone Gap, VA
"still sick... stupid virus. its been 2 weeks now"
12:18am, June 14, 2009
Trying To Deal... Mood
Monday, May 25, 2009
alright..  so i'm sorta dealing..  a little bit..  well who am i kidding?  i am pissed the fuck off and so aggravated i cant think straight ..   what happed to the old me?  the one who just took it day to day and managed and adapted to all the things i needed to...  if i got sick from the sun i didnt blow up like i do now (which makes it alot worse cuz lupus can be triggered by emotions as well).. while i was curled up with the usual 103 fever and chills i would see that as time to sit and read a book or watch a movie...  now i am just bitchy and i cant even stand myself!  *sighs*   i dealt with this stupid disease for over 20 years so why am i having a hard time dealing now?  perhaps kids deal with things better than adults sometimes.  perhaps it chemical.. perhaps its just me tryin to admit defeat...  i'm still standing on that mountain... but i havent dug my heels in yet and stuck that flag of defeat on there...  well... perhaps its because everything has hit me all at once this time..  before all i usually had to worry about were 2 things..  the RA and the lupus...  well this time the whole dam mixed connective tissue disease is in full swing.(maybe undifferentiated connective tissue disease), rheumatoid arthritis, lupus, polymyositis, raynauds syndrome, scleroderma, ... and a few others..  i may be loosing the tip of my right middle finger from the raynauds as well..   it feels like i have a razor thru it digging into the bone..  (sorry for the graphicness).. i cant even spend 5 minutes out in the sun with my son because 10 minutes later i am really really sick... and yea i know .. this is the second time i've written about this. sometimes writing about it helps me ..  i had a delusion that it would always be under some sort of control.  i had the delusion that i would live to be 100 (if i just stopped with the greasy foods and all the sweets *lol*).. at one point i did not fear death.. i had no fear what so ever..  i coulda stood at the mouth of hell and mooned the devil..  that was my strength and sometimes my fault..  now..  well, i dont know how strong i am anymore.  i dont know how to face certain things..  i've become soo soft... and it annoys me..  it angers me.. i wanna scream and cry and well, i cant bring myself to either..   i am just a really big mess right now..  my sweet little sugar baby keeps me occupied sometimes tho, so i am not as upset as i would be otherwise..   am i weak for admitting my weakness, or am i strong because i am able to admit it?   yea i'm writin a long one again *L*.  its rainy out and theres nothing on t.v so i need something to do .. and i already made a cake .  sooooo   *lol*  well i suppose this is all for now..  i'm pretty tired and the cake is calling me.. *LOL*
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Comments

  1. GildedButterfly

    I know it was back in May when u wrote this but I was deeply touched & hope u have some more journal entries in the very near future. I have only been dx w/ MCTD 4 five mo. & fill like it's been a lifetime. The depression is more intense, the cutting sharper. I could never imagine 20yrs of this. Help!


    GildedButterfly

mortality of loved ones Mood
Thursday, March 12, 2009

well.. i have spent the the last year wondering and worrying myself half to death.  oh yea i got problems of my own.. but i dont really worry about me.. honestly i never do. i just worry about the ones i love.   it was a little over a year ago that my man, jonathan, his grandfather, fred,found out that he had cancer, again. he was a 3 time survivor.  strong old man. the kind of man that cant be still for anything.. a working man with many hobbies. oh yea, he retired a long ago.. but he had many projects and hobbies to always keep him busy.  well everyone figured this cancer would be a quick fix like the others. do surgery to remove it, then do either chemo or radiation.  well.. this time it had gone too far for that. they did try chemo, but it only made him sicker. this time last year a funny little dr. in a university hospital he was at told him he had 2 months to live at most and he needed to go home and get his affairs in order..   of course that upset everyone.. but then he went to a special cancer clinic. the dr. there told him there was no reason to think he wouldnt get over this .  well, that made everyone happy..  do you see the rollercoaster effect here yet?   they found the cancer in his stomach...  several months later (more than 2 months) they did several other tests and found out that it had gone to his lymphnodes..  well, anyone that knows about cancer knows when it goes there it can pop up any freakin place it wants..    several months later it was in his liver... then kidneys.. then esophagus... at one point the cancer dr. said there wasnt any need in putting him thru anymore tests. it would just be more suffering for him.  i had to sit by and watch this man waste away.  this man that took me in and accepted me as a granddaughter.  the one man my jonathan was closest to.  i had to watch jonathan suffer as well..  and his mom and dad..  we lived next door to fred up until a little over a year ago. we're still in town just the other side of it. anyway, everyday we would go over and every day i saw him suffer.. and the rest of his family grieve ..  i think it was about november or december they had to put in a stomach tube because the cancer had closed up his esophagus. nothing could go down..  nothing..  march 5th  he went into the hospital.  he couldnt breathe, he couldnt move..  march 8th at around 4 am.  he started mumbling.. only a few words could be made out.. he wasnt looking at anyone in particular, in fact it seemed like he was looking right thru everyone.  he was talking of home.. at 6 am..  he passed away.   we got the call at about 6:10 ..   its only now that i can even let myself grieve.  i have had to be the strong one for everyone all these months. i've had to watch my love suffer.. i've had to watch this family that took me in and treated me as their daughter suffer..  the funeral today was hard. the wake the other night was hard..  if anyone of you has ever lost anyone to anything like that, then you know how i feel now. and thru all of this, back in jan. my step dad.. the only dad i have ever known, told me he had prostate cancer.  mind you, it was caught really early. he didnt even have any symptoms. and now he has had his surgery and everything is fine.. but still thru all that, i was solid for everyone.  i was here, watching my man and his family fall apart with grief, and i went back home to find my family falling apart with grief.    now, at this very moment, i feel like i can finally fall apart. i know the acceptance of freds death is still new and prolly hasnt hit home entirely.  i have always known that facing the mortality of the ones you love is truly one of the 2 worst things .. the second being , seeing them suffer and not being able to help or do anything at all about it.  i understand how jonathan and his family feels.  my grandmother is the one i am closest too.  shes 85 now.  and looks only 60ish.  shes a diabetic, with slightly high blood pressure and cholesteral...  but she is VERY independant.   i feel like she should always be around ya know..  i know very well she wont.  but i dont really want to accept  that.. i dont want to face her mortality.  just like i dont want to ever face my sons, my moms, my sister & brother in law.. my step dad ..  and even tho i dont know him well and he tends to be a bit of a screw up.. even my dad..  tonight fred's and my step dads has hit my full force.  everyone has found their acceptance and has started dealing.  i know i am gonna have to watch jonathan, for many more days and nights to come, grieve and maybe even cry.. (he mostly does that when he thinks i am not looking)..   sooo...  right now, for these few moments, i am gonna let myself fall apart a little.  i accept my own mortality with solid knowledge... i've died too many times , at one point its all you really can see....  its just hard for me to face theirs.   so for now i'm gonna go curl up with my prayers and thank the lord for everything hes done for me , for us ..  *hugs&love2all*

 

amy

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stupid idiotic insurance companys! Mood
Tuesday, February 24, 2009

 

ok... well..  i went to my rheumy thrusday.. he said since i have been in so much pain the pain meds arent doin anything, its time to start another arthritis med..  i hate starting new meds..  for 2 reasons..  1.  i have to figure out when the best time to take it is, which usually takes at least a month.. (trying a certain time for a week at a time)  and the second..  the stupid idiotic insurance company battle.. ok..  so let me tell you what the dumbnuts did this time..  doc wanted me to take arthrotec..   they absolutly refuse to pay for it....  BUT they will pay for the meds seperatly.   *LMAO*   they will pay for the voltaren and cytotec seperatly, but not the other medicine that is made up of the 2 meds..  am i missing something here?  what the heck is the difference?  its the same dam thing.. only thing is you either take 1 pill or 2.   *L*   sometimes i would love to know the motivation behind their stupidity.. and other times i dont think i could handle the level of stupid they function on..  *sighs*  well... i better go figure out when to start this stuff.  and i have some packing to do. my stepdad has the prostate cancer surgery thrusday..  i gotta go spend a week with my gran since my mom is gonna be taking care of my stepdad.. its gonna be a very long week ..   take care all.. 

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