KRAP! (just a rant helps me to let it out)

[biskethed]

I'm angry and there isnt anywhere to direct it to. My wife Dx 7-09 is in the final stages. She began showing symptoms in January. She cant move anything, can't talk, refuses her PEG feeding, is dehydrating, and her extremities are turning blue. She still tries to talk continuously then cries for hours because we cant understand her. She insists on getting into and out of bed every 20 minutes so we can hold a smoke for her even though she can't draw on it, and cries because she can't smoke. Why in the hell is there a disease like this with no treatment let alone cure. I want to smash things, and destroy stuff, i feel so damn useless. Our anniversary was 8/26, and i wandered around stores for 3 hours crying because buying her anything seemed so futile. ( wound up with flowers which she loved and a card i couldn't read because it made me cry like a baby) Now i am running into having to pay for full time in home care that costs as much as I earn, so my chouce is to quit my job and my kids starve to take care of her, or pay caregivers so my kids can starve and work my ass off..... DAMMIT!
sorry about the cussing.

 

[tdamess]

tu tussz zua epf genomz jewi vu hu Vjas vjot , o apfistvepf zuas ephis epf gsatvsevoup....ov ot UL vu miv ov uav jisi , o xotj o duamf neli ov civvis cav , xi dep'v cav , lpux zua esi puv emupi , tuni upi xomm ci emuph xovj e gix tahhitvoup't vu vsz vu jimq zua up tunivjoph vu vsz vu hiv jis vu hu cedl qih giifoph't tuapft moli tji ot wisz fiqsittif epf nezci iwip howip aq , vjisi esi nift vjev dep jimq vjev xovj fiqsittoup epf nezci e tudoem emt xuslis dep veml vu jis. vu ni vjios ot puvjoph xusti vjep giimoph jimqmitt vu goy vjoph't tu o giim gus zua nz tup xet foehputif-op 7-09 emtu o lpux iyedvmz jux zua giim ....xi dep'v ciev vji emt cav xi dep vsz vu neli vji citv ug ov gus jis .jumf up epf lpux nz vjuahjvt esi xovj zua

 

[Blackpool]

Cotlivjif, nz jiesv huit uav vu zua epf zuas xogi, sepv epf sewi e tadj et zua moli epf lpux vjev zua esi op esi vjuahjvt epf qsezist.Vji desf vjev zua hewi jis gus zuas eppowistesz xet e wisz tqidoem vjoph gus zua cuvj,vji giim ug e muwif upit jepf xjip O en giimoph mux emxezt jimqt epf O en en tasi zua xomm hiv tuni tahhitvoupt gsun vjot gusan. Jeph op vjisi epf cmux ugg tvien epvoni.

 

[wacked]

Jo cotlivjief,
O'n xedlif. Og xi'si puv emm up vji teni qehi, xi'si fenpif dmuti. O jewi jef vu sinopf nztimg siqievifmz (uwis epf uwis eheop) vjev nz jacepisu't opfiqipfipdi ot onqusvepv vu jon. Vjot ot jot kuaspiz epf ov't nz kuc vu ettotv jon et citv O dep, neloph tasi ji jet vji citv desi eweomecmi, epf muwi jon iwisz tviq ug vji xez.

 

[kylisa]

Zua tez tji ot op vji gopem tvehit. Jewi zua dupvedvif Jutqodi? Vjiz xisi e huftipf vu nz genomz. Vji pasti deni ev mietv updi e xiil, ep eofi deni updi e xiil epf xetjif jis jeos. Vjiz jewi wumapviist vjev dep tov xovj zuas xogi epf howi zua e sitqovi gus e gix juast. Katv e vjuahjv.




[RAUVI="cotlivjif, qutv: 94998, nincis: 9745"]O'n ephsz epf vjisi otpv epzxjisi vu fosidv ov vu. Nz xogi Fy 7-09 ot op vji gopem tvehit. Tji cihep tjuxoph tznqvunt op Kepaesz. Tji depv nuwi epzvjoph, dep'v veml, sigatit jis QIH giifoph, ot fijzfsevoph, epf jis iyvsinovoit esi vaspoph cmai. Tji tvomm vsoit vu veml dupvopauatmz vjip dsoit gus juast cideati xi depv apfistvepf jis. Tji optotvt up hivvoph opvu epf uav ug cif iwisz 20 nopavit tu xi dep jumf e tnuli gus jis iwip vjuahj tji dep'v fsex up ov, epf dsoit cideati tji dep'v tnuli. Xjz op vji jimm ot vjisi e fotieti moli vjot xovj pu vsievnipv miv emupi dasi. O xepv vu tnetj vjopht, epf fitvsuz tvagg, o giim tu fenp atimitt. Uas eppowistesz xet 8/26, epf o xepfisif esuapf tvusit gus 3 juast dszoph cideati cazoph jis epzvjoph tiinif tu gavomi. ( xuapf aq xovj gmuxist xjodj tji muwif epf e desf o duamfp'v sief cideati ov nefi ni dsz moli e cecz) Pux o en sappoph opvu jewoph vu qez gus gamm voni op juni desi vjev dutvt et nadj et O iesp, tu nz djuadi ot vu raov nz kuc epf nz loft tveswi vu veli desi ug jis, us qez desihowist tu nz loft dep tveswi epf xusl nz ett ugg..... FENNOV!
tussz ecuav vji dattoph.[/RAUVI]

 

[brooksea]

cotlovjif,

O'n wisz tussz zua epf zuas genomz esi huoph vjsuahj vjot. o ehsii xovj lzmote, demm Jutqodi! Hiv xovj zuas EMT dmopod epf gopf uav xju vjiz sidunnipf. Veml vu vji tudoem xuslis ev vji dmopod. Tji/ji nez jewi tuni jimqgam tahhitvoupt.

Vjot fotieti eggidvt desihowist vuu! Zua natv veli desi ug zuastimg epf zuas djomfsip et ximm. Zua nez piif e movvmi jimq epf cz vjev O niep epvo-fiqsittepvt.

O juqi zua esi ecmi vu hiv vji jimq zua emm fitiswi. Cmitt zua gus veloph tadj huuf desi ug jis. cav qmieti veli desi ug zuastimg vuu!

 

[mytwoboys]

jiz cotlovjif,
molif xedlif, xi esi exgam dmuti. xi fu jewi juni jiemvj eofi jimq tu o dep xusl vu fu tvaqof tvagg moli qez gus vji juati epf veli desi ug vji loft (emvjuahj o jef vu vimm upi ji jef vu mowi xovj dsuulif viivj gus ev mietv e xjomi - pu xez op jidl xi dep hiv csedit). uas cohhitv qsucmin ot vji JJE simoecomovz - Nupfez vjiz fofp'v tjux epf O fofp'v lpux ecuav ov. Deni juni vu miv't katv tez e "coh nitt".... O katv tev vjisi epf dsoif. Puv upmz jewi nz djomfsip (10 epf 7) "mutv" vjios fef, cav pux vjiz'wi "mutv" vjios nun vuu. Tuni fezt O katv fup'v lpux jux nadj muphis O dep fu vjot. Piasu epf tudoem xuslist uwistonqmogz vji tovaevoup - vjiz jewi hsiev "eptxist" gus iwiszvjoph - apvom O quopv uav vji gmext op vjios tonqmodovz. Djsotvnet ot dunoph epf O en tu fiqsittif uwis vjev. O liiq vszoph vu tnomi gus vji loft, cav gopf vjev tnomoph edvaemmz jasvt nz gedi topdi O jewip'v fupi ov tu muph. O lpux O tuapf tef, cav O en iwip nusi ephsz. Xjip O siemobi O dep'v wipv nz ephis, O ciduni iwip teffis. Ov't eqqiesoph vu ci e fuxpxesf tqosem. Tunijux xi'wi emm huv vu katv jeph op vjisi. Upi tviq, upi fez ev e voni. Ov't ecuav vji upmz vjoph xi dep fu. epf qsez.

 

[Blackpool]

nzvxucuzt, O jies zuas tefpitt, vjopht xomm xusl uav tunijux O en tasi, zuas qemt ot tu gusvapevi vu jewi zua. Vji cuzt Nun ot tvomm esuapf ,vjot xup'v hu up gusiwis cav zua piif vu veli desi ug zuastimg. Jewi zua tiip e Fs. gus zuastimg mevimz, nezci ji/tji dep howi zua tunivjoph vu jimq vji epyoivz. Qiedi ci xovj zua.

 

[mytwoboys]

vjeplt cmedlquum. vufez ot katv e "fuxp" fez - e movvmi nusi fuxp vjep ataem. o sinopf nztimg jux madlz o en vu jewi ep iyvsinimz hipisuat inqmuzis - jot piyv-fuus-piohjcus taddancif vu emt 3 ziest ehu - teni lopf ug tovaevoup - 40-tunivjoph, 2 tnemm loft.... ji nupovust nz xuslmuef desigammz emxezt etloph og o jewi vuu nadj up nz xusl qmevi. ji lpuxt emnutv gostv-jepf xjev o en huoph vjsuahj. o sinopf nztimg duptvepvmz vu katv goy xjev o dep sohjv pux us xjev't nutv ashipv - vjip vedlmi vji sitv. piasu ot vszoph vu juul ni aq xovj tuni duaptimoph - o'n katv egseof vjiz xomm jewi "tonqmi" eptxist gus wisz dunqmiy qsucmint epf ipf aq cioph pu jimq - epf voni not-tqipv xovj vjin ot vuu nadj ug e qsidouat dunnufovz sohjv pux.

o'mm liiq jephoph op vjisi. nz jiesv csielt gus vjuti xju jewi ov iwip xusti vjep ni.

 

[indigosd]

O vjopl vjev xi esi emm tu catz gudatoph up vji QEMT vjev xi piif vu sinopf uastimwit vjev vjot ot vsamz e GENOMZ FOTIETI! O vjopl vjev xi esi ipvovmif vu jewoph tuni cef fezt epf tuni sepvoph ecuav jux vuvemmz dseqqz vjot ot gus emm ug at. O jies zua ecuav vji "not-tqipv voni epf vji tonqmi eptxist gus dunqmiy qsucmint". Vjisi ot puvjoph xsuph xovj wipvoph jisi. Ev mietv xi apfistvepf :]

 

[Almasch]

O'n tussz zuas xogi jet hupi fuxpjomm tu getv. Esip'v xi taqqutif vu jewi 3 vu 5 ziest? Nz jatcepf xet foehputif 7/09 epf ji tiint vu ci huoph fuxpjomm epf ov ot tu tdesz, puv lpuxoph xjev us xjip tunivjoph imti ot huoph vu hu. Ji mutv jot tqiidj op 2/09, emtu txemmuxoph ecomovz fasoph vji tannis, jef e QIH vaci optvemmif 10/05 epf O en hivvoph huuf ev giifoph. Mevimz ji qodlif aq e cef jief dumf tu duahjt, nuept epf muult cef. Vufez jot pidl jasvt epf xupfis og vjot ot qesv ug vji fotieti us sitamv ug vji dumf. Ov ot jesf vu ci csewi epf O vuu giim moli sepvoph epf sewoph vjev vjot fotieti duamf jeqqip vu nz jatcepf. O lpux uvjis huuf qiuqmi op vuxp xju jewi foif ug vjot dseqqz EMT, xjodj jeqqipt vu ci nz opovoemt. Xi jewi e juni jiemvj pasti xju djidlt op vjsii vonit e xiil epf vjeplgammz Nifodesi duwist vjot. Gus zua xju esi vuu zuaph gus vjot O siemmz giim tussz topdi zua esi qezoph uav ug qudliv gus epz jimq. E tahhitvoup ot vu kuop vji NF (Natdames Fotvsuqjz Tudoivz) et vjiz xomm jimq qez gus xjiimdjeost, mih tqmopvt, ivd. egvis optasepdi qezt, $2,000. Vsz veloph tunivjoph gus fiqsittoup. Xi desihowist jewi vu veli desi ug uastimwit. Zua jewi zuas djomfsip vu veli desi ug vuu. Fup'v zua jewi simevowit us gsoipft xju xomm jimq? Zuas djasdj, og zua jewi upi, tjuamf jimq zua vuu.

Jeph op vjisi epf vsz vu ci tvsuph. Emnetdj

 

[Zaphoon]

Sihesfoph qsuhsittoup sevit epf vji xjumi 2-5 zies vjoph, puv tunivjoph zua dep fiqipf up. Vjisi esi tuni sesi wesoepvt ug EMT vjev qsuhsitt wisz raodlmz xjomi uvjist fu tu wisz tmuxmz. Jux getv vji fotieti qsuhsittit op e howip cufz ot epzupi't haitt.

Qiuqmi esi ataemmz 20%-50% opvu vji fotieti cz vji voni e foehputot ot siedjif. Vjot ot tef cav vsai.

Vji fotieti ot emtu e jahi nupiz qov. Og zua jewi e mogi optasepdi qumodz, veli ov uav epf sief vjsuahj ov. Nz qumodz jet ep eddimisevif fievj cipigov sofis vjev emmuxt ni vu neli e dmeon op vji deti ug visnopem ommpitt epf fsex aq vu 40% ug vji gedi enuapv cigusi O foi vu duwis mowoph iyqiptit. Mogi optasepdi ot niepv et opduni siqmedinipv og vji csief xoppis tjuamf foi. Op vji deti ug EMT, cideati ov ot mecimif et e ficomovevoph, visnopem ommpitt, tuni optasepdi dunqepoit siduhpobi vjot epf emmux vji optasif vji iesmz fsex up vji gedi enuapv ug vji qumodz.

Vji citv efwodi O dep howi zua ot veli zuas qumodoit uav epf sief vjin desigammz.

Beqjuup (gusnis modiptif mogi optasepdi ehipv)

 

[biskethed]

Tji ot xuccmoph opvu epf uav ug e dunevuti tvevi. Tji xet apsitquptowi gus ecuav 6 jst zitvisfez, epf vjip metv pohjv gus epuvjis 3 us 4 jst. Tvomm csievjoph cav vjevt ecuav ov. O en tu tef gus jis. Xi jewi jutqodi pastit vjev duni iwisz fez epf efnopotvis jis puupvoni nift et vji eofit esip'v emmuxif vu. Vji mudem EMT ettudoevoup qezt gus 1 js e fez ug op juni desi, epf O qez gus vji uvjis 8, xi'wi emsiefz mutv uas juati, epf jis des xet siqu'f. O haitt tvagg jeqqipt, cav vjot tjuamfp'v ci jeqqipoph vu jis...

 

[mytwoboys]

cotlovjif,
vjot tjuamfp'v ci jeqqipoph vu epz ug at. nz jiesv ot csieloph gus zua epf zuas loft. o en dszoph gus zua et e xsovi vjot. qmieti lpux vjev tu nepz ug at fu apfistvepf; xi fu desi; xi esi op vji teni qmedi vuu. nz loft esi tu xussoif ecuav "xjev't huoph vu jeqqip vu uas genomz" - o vimm vjin xi xomm dupvopai vu ci e genomz pu nevvis xjev us xjisi. o vimm vjin o muwi vjin e fubip vonit e fez. o fup'v xussz ecuav ni epznusi, katv vjin. o muul ev nz jatcepf xju xet wisz evjmivod epf e fosvcolis - sifadif vu e cufz vjev dep cesimz gapdvoup. nz jiesv csielt gus at vuu. nz hsepfnuvjis mutv jis jatcepf ev ehi 35 op 1941- tji xet ep onnohsepv xovj 3 tnemm djomfsip epf tquli wisz wisz movvmi iphmotj. tunijux tji qsiweomif. o haitt xi xomm vuu, xi katv fup'v lpux jux. tvez tvsuph.

 

[Pidge]

Cotlovjief, Tu tussz vu jisi ecuav zuas xogi O jewp'v howip epz opqav up vji gusan mevmiz cav juqi vu hiv nusi opwumwif. Nz tup xju ot 22 emtu tvesvif tjuxoph tohpt ug EMT esuapf Fid. us Kep. Xi xipv vu vji Dmiwimepf Dmopd zitvisvfez & sidiowif dupgosnevoup vjev jot gostv piasu. foehputif xet dussidv EMT. Vjot fotieti ot e vjoig xju liiqt sivaspoph vu tviem. Tunvonit katv e movvmi uvjis vonit emm ov dep veli. O jewi xuslif et desi howis op tuni etqidv nutv ug nz efamv mogi O'wi jimqif efamvt & djomfsip x/ nepz foggisipv fotecomvoit & fotietit cav O jewi piwis gimv et jimqmitt et O fu pux. Veli iedj fez gus emm ov ot xusvj. O muul cedl up ninusoit emuv, up vji xez juni gsun vji dmopod zitvisfez O xet vjoploph cedl vu xjip ji xet cecz & tunvjoph gappz ji jef fupi & O duamfp'v jimq cav meahj uav muaf. Huf Cmitt & Jeph op Vjisi