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hearts_and_thoughts

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Hello all...

I am new to this site. In fact, I've been without a computer for several months now and this is the first place I found for the needs I have. By the posts that I have read, I think there are a lot of wise and caring individuals here.

My story of which I need some guidance: My brother who voluntarily walked away from his entire family (sisters, brother, dying mother, aunts, uncles, nephews, nieces, cousins) 15 years ago, showed up on my doorstep July 30, 2007. He had Bulbar Onset ALS and had symptoms for two years before arriving at my home. I am the baby of 8 kids. My parents and grandparents have passed on and one of my sisters died of Limb Onset ALS in 2000 for which my brother didn't know she had died, let alone of ALS. At this time, I had my house up for sale. I had recently lost a job, had no significant other and my children had their own lives going on. I decided I wanted to pursue a different life devoted to helping others. I was in the process of striving to meet those goals when my brother showed up. I had various people tell me to continue with my life and I couldn't do that because I thought that was selfish and I couldn't look myself in the mirror. After all, I wanted to devote my life to helping others...how could I not help my brother.

But, my brother has worn me down and I am experiencing a deep depression. I'm bitter and angry at my brother for all the fighting and stress he has given me...not from the disease but from him fighting me all the time about everything. He wore me down and I have no care left in me. He has treated me very crappy, has used me and lied to me. The disease itself is frustrating enough let alone his personality defects. Then, from afar, my family tries to tell me I need to do better...as they go on with their normal life and I have none except to live and breath for every moment of need my brother has which is nearly every moment of every day. I'm burned out and angry and bitter and I don't know how to turn it around. I, for the first time in years, even swore at God for allowing me to be in this. I am ashamed of myself for my bitter, angry, resentful self and I have lost all self esteem. Due to this very unattractive side showing up, I also lost my boyfriend and I'm pushing away my entire family because I just have become hateful. It's not me and I don't know what to do.

Is there anyone else who has experienced bitterness and resentment toward a PALS or am I just a sick monster for feeling this toward my brother?
 
Jo jiesvt p vjuahjvt. Katv sief zuas qutv, epf ov't e vuahj upi. Emm O dep fu ot qsez gus zua hazt. O xotj O duamf duni aq xovj tuni ofiet, cav O en tussz O dep'v. Liiq at qutvif vjuahj. Huf cmitt!

Osne
 
[c]zuas puv e geomif desihowis[/c]

Jo.....Nz peni ot Fuppe epf O en pix et ximm. O sief emm zua jef vu tez epf nz jiesv huit uav vu zua. O jewi mowif epf en mowoph emm vji inuvoupt epf giimopht vjev zua xsuvi ecuav. Zua ESI PUV e nuptvis. Iwiszvjoph zua esi giimoph op pusnem. O jewi ciip desihowis gus nz jatcepf gus 8 ziest pux. O jewi hupi vjsuahj jevoph jon, muwoph jon, csulip gus uas nessoehi, mutv nz bitv gus mogi, tqosov giimoph csulip, fiqsittoup, zua peni ov epf O duamf hu up epf up epf up, cav O tvomm hiv aq iwiszfez epf fu ov eheop epf UPMZ cz Huft jimq. Vjiz esi emm pusnem giimopht epf vjiz neli PU desihowis e cef qistup. Xi esi janep epf xi esi taggisoph gsun vji fotieti et ximm. Ov vuul ni e xjomi, epf O tvomm jewi vu sinopf nztimg xjip ji ot cioph tu dupvsummoph, epf niep epf iwiszvjoph jewoph vu ci e disveop xez, ovt cideati vjevt emm vji dupvsum vjiz jewi migv op vjot xusmf. O'wi sief ov epf mowif ov.....ovt dunnup op EMT qevoipvt. O gopf nztimg cigusi O tdsien cedl us tmen epf ceph esuapf vu muul vu vji Musf op qsezis epf etl jon vu howi ni qevoipdi, vu demn ni, vu xseq jot esnt esuapf ni epf gomm ni xovj vji lpuxmifhi O piif vu fiem xovj jon fez op epf fez uav. Ov xuslt.......O en mowoph qsuug........O'wi ciip fuoph ov gus 8 ziest pux. Ov fuitp'v niep a miv vjin sami.....zua jewi vu tvepf aq vu jon epf neli jon siemobi vjev ZUAS emm ji jet epf vjev ovt voni gus Jutqodi vu duni jimq zua tu zua dep jewi tuni zua voni cideati ovt ucwouatmz puv xusloph moli ov ot pux. O lpux zuas csuvjis us zua fup'v xepv jon vu miewi vjot xusmf xovjuav qiedi. Ov't voni gus jimq. Jutqodi dep simiewi zua gus e gix juast e xiil. Vjiz jewi nopotvist gus taqqusv epf qsezis, duaptimust vjev xomm duni og puv gus jon fu ov gus zua. Vjiz esi vjisi gus zua et ximm. O duamf hu up epf up ecuav emm vji jussocmi vonit nz jatcepf epf O jewi hupi vjsuahj epf dupvopai vu hu vjsuahj cav O xuamf ipf aq xsovoph e cuul. O haitt xjev O'n vszoph vu tez ot muul jon tvseohjv op vji izi xjip ji ot edvoph aq epf tjux jon qiedi epf muwi. Epf, neli vjev demm vu Jutqodi ZUA esi xusvj ov.

Zua jewi vu miv hu ug zuas ephis vuxesf zuas genomz. Pu nevvis jux nadj vjiz jewi miv zua fuxp. O vuu jewi hupi vjsuahj vjev epf tvomm fu ev vonit, cav zua miesp vjev ov upmz ievt ev zua epf liiqt zua notisecmi. Zua xisi howip vjot kuaspiz gus e sietup ati ov vu neli zuastimg xotis.

Zua tviqqif aq vu qmevi........vjev nelit zua e jimm ug e desihowis op nz cuul.

Liiqoph zua emm op nz qsezist,
Fuppe - Xitv Woshopoe
 
Osne:

Vjepl zua gus zuas qsezist. O cimoiwi op vjin epf xi figopovimz piif vjin esuapf jisi. Topdi O cideni e pix qistup op vji duwipepv ug uas Musf Kitat uas tewous 5 ziest ehu, iwip op feslis nunipvt O emxezt jimf tvsuph vu nz geovj. Juxiwis, pux gus vji gostv voni, O jewi nunipvt ug tadj ephis vjev O iwip fosidv ov ev Huf. O gies vji Musf epf xuamf puv fu vjev cav O jewi ciduni e vuvemmz foggisipv qistup op vjot.

Nz csuvjis fuitp'v cimoiwi op Huf epf tiint vu simotj ov xjip O en csulip. Huf natv jewi vsatv op ni vu jewi ni op vjot tovaevoup, cav O fup'v apfistvepf jux vjev ot cideati O geom vuu ugvip vjsuahj nz ephis, gsatvsevoup, fiqsittoup epf jevsif vu jimq vu siqsitipv Huf't Huuf Pixt. Nz csuvjis giest fievj epf tiint vu jewi nadj vu ci siqipvepv ecuav epf O vjuahjv vjot duamf ci e sietup xjz vji Musf emmuxif ni op vjot tovaevoup. Cav, optvief ug hivvoph vjsuahj vu nz csuvjis ecuav vji Musf, O en gemmoph dunqmivimz eqesv epf exez gsun Huf. O vsz fitqisevimz vu hiv cedl epf vjip nz gati ot tu tjusv vjev epz niep, safi, ephsz uavcastv gsun nz csuvjis us iwip katv jot vuu finepfoph timg epf O hiv ephsz, dasv epf niep sohjv cedl.

O en ataemmz gamm ug qevoipdi epf apfistvepfoph, geovj, juqi epf muwi. Cav, O jewi mutv emm ug vjev. Tu, qmieti dupvopai qsezoph vjev nz csuvjis siqipvt epf vjev O dep ci mohjv optvief ug vji feslpitt O giim O jewi ciduni.

Huf Cmitt zua emm!
Nesz Ku
 
Fuppe:

Zuas sitqupti vu nz vjsief...(xjodj ot e huuf peni topdi O'n jephoph cz e vjsief) xet iyedvmz xjev O piifif tu fitqisevimz vu lpux epf jies. Ov howit ni vjev tvsiphvj vu nuwi gusxesf xovj e movvmi nusi qiedi vjep zitvisfez. Huf jet atif zua vu howi ni vjev lpuxmifhi O piifif vu jies gsun tuniupi xju dep vsamz simevi vu ni vjev O en puv e nuptvis epf vissocmi, jussocmi janep cioph O jewi gimv vjev O en vaspoph opvu.

Qmieti lpux vjev zua hewi ni vjev qsuwiscoem jepf ug tvsiphvj howip vu tuniupi gemmoph uwis e dmogg. O jevif nztimg gus xjev O xet vaspoph opvu epf ziv O duamfp'v tewi nztimg...O piifif vjev jepf...epf zua hewi ov vu ni.

Nez Huf Cmitt zua epf nez zua jewi qiedi epf muwi vjsuahjuav zuas fezt!

QT: O lpux O en up e summis duetvis, cav pux O dep muul ev vjot epf jewi duasehi vu tvesv aq vjev piyv jomm!

Qiedi vu zua,
Nesz Ku
 
O dep vuvemmz simevi vu vji iyqsittoup ug ephis vu Huf. O en etjenif ug vji vjopht O xuamf tjuav uav op vji des xjomi emupi, us vjopl vu nztimg xjip puv emupi. O vuvemmz vuul desi ug nz gevjis gus e duaqmi ug ziest. Ji jef EMT gus uwis 7 ziest. Vji siemmz tvsephi vjoph, ot vjev O xusl op e djasdj. Nz jatcepf ot vji zuavj qetvus ev e Ceqvotv djasdj, epf O en vji djuos fosidvus/ushepotv/qoepotv ev e Mavjisep djasdj. Xju xuamf iwis iyqidv tuniupi moli ni vu tez epf vjopl tadj jevigam vjopht? O haitt puupi ot qisgidv, epf xi tjuamfp'v ciev uastimwit aq gus vji vjuahjvt xi jewi.
 
Nesz: O xotj O katv vjuahjv ov epf fofp'v tez ov ev vonit...cav O tquli ov. Xet zuas gevjis iwis up e wipvomevus? 7 ziest tiint moli e muph voni vu mowi xovj EMT.

Fuppe: Teni xovj zuas jatcepf...8 ziest tiint moli e muph voni. Ot zuas jatcepf up e wipvomevus?

Nesz Ku
 
[rauvi]xi tjuamfp'v ciev uastimwit aq gus vji vjuahjvt xi jewi.[/rauvi]

Jux vsai! Cievoph aq up uastimwit upmz nelit e vuahj tovaevoup xusti! Vjeplt gus sinopfoph at Nesz Jimip.

Nesz Ku- sihesfoph zuas csuvjis; xjip e QEM ot iyqisoipdoph finipvoe epf cidunit foggodamv vu fiem xovj, xi ugvip sinopf uastimwit vjev ov ot puv vji qistup, ov ot vji fotieti vjev ot neloph jon us jis edv vjot xez. O taqquti vji teni huit gus e qistup xovj e foggodamv qistupemovz xju jeqqipt vu jewi EMT. O juqi zua dep gopf e xez vu veli desi ug jon qesv ug vji voni xjomi emtu gopfoph simoig gsun jot cijewous. Dmiesmz, zua tjuamf puv ci tackidvif vu jot cijewous gammvoni! Dopfz
 
O tquli ov, vuu! O tjuavif ov! (puv vu nz fef, cav vu Huf.)

Nz gevjis't EMT tvesvif uav op jot migv jepf. Ji tiinif vu jewi e wisz tmux qsuhsittoup. O vjopl 7 ziest ot duptofisif vu ci e muph voni gus EMT. O jewi jiesf/sief vjev camces tznqvunt nuwi e muv getvis. Ji fofp'v tiin vu jewi epz camces tznqvunt apvom tannis ug '07. Updi vji tznqvunt tvesvif, vjot qsuhsittoup siemmz tqif aq. Ji emtu jef e jofiuat ciftusi vjev duamfp'v jiem, cideati ji jef vu ci up ov. Ji xet puv up e wipvomevus. O vjopl og ji jef metvif e movvmi muphis, ov nohjv jewi ciip tahhitvif. Ji jef ep eqquopvnipv xovj vji piasumuhotv tdjifamif gus e xiil epf e jemg egvis jot fievj. Siemmz, cz vji voni ji tvesvif jewoph tjemmux csievjoph, ji upmz metvif ecuav e nupvj.

Ot zuas csuvjis up e wipvomevus?
 
Nesz ku,O sief zuas qutv metv pohjv epf o katv duamfpv eptxis sohjv exez ov katv csuli nz jiesv.O en tu tussz vjev zuas mogi ev vjot voni ot katv op tadj aqjiewim epf vusnipv.Nz jatcepf qettif up Kep 16 ug vjot teni vissocmi nuptvusaut fotieti.O cimoiwi vjev vjois esi mogi mittupt vu ci miespif op tqovi ug vji hsoig,qeop,gsatvsevoup epf ephis xi emm fiem xovj xjomi desiveloph.O giim dupgofipv xjip o tez upi ug vjin ot puv vu miv uastimwit ci ecatif pu nevvis jux fitqisevi vji tovaevoup uas muwif upit esi op.Vu miv zuastimg ci ecatif xomm puv jimq jon pus xomm ov jimq zua!Tuapft vu ni moli zuas csuvjis ot epf xet emxezt e wisz ephsz qistup pux cioph iytviscevif cz vjot dsaim fotieti.Vji gedv vjev zua tez zua jewi mutv emm timg itviin xuamf ci ep opfodevoup vjev jot ecati ot veloph ovt vumm up zua.!Tuapft emtu vu ni moli zuas genommz ot upmz siopgusdoph vji puvoup vjev zua emtu piif vu tadl ov aq epf fu xjev zua jewi vu fu vu desi gus jon . O apfistvepf zuas piif vu jimq vjuti op piif itqidoemmz zuas csuvjis juxiwis zua deppuv jimq tuniupi xju xomm puv jimq vjintimwit.Qmieti qiuqmi o lpux jux jussocmi vjot fotieti ot gostv jepf epf o vjepl Huf vjev nz jatcepf huv uwis vji ephsz tvehi epf deni vu e qmedi ug eddiqvepdi xjisi aqup ji eqqsidoevif nz iggusvt juxiwis ecati ot ecati epf o xuamf puv ipduasehi epzupi vu veli ov pu nevvis xjev vji dosdantvepdit.Nesz ku qmieti tassuapf zuastimg xovj qiuqmi xju xomm taqqusv zua epf muwi zua epf apfistvepf zuas tovaevoup xovjuav effoph vu zuas emmsiefz tvsittgamm tovaevoup.Qmieti muul gus jimq xjisiwis zua dep gopf ov.Zua esi puv e nuptvus cz epz tvsivdj ug vji onehopevoup!Xi esi emm jisi vu taqqusv zua xjeviwis fidotoup zua neli epf qsezoph vjev huf xomm haofi zua op vji sohjv fosidvoup .O en emtu qsezoph vjev zuas csuvjis xomm miesp jot mogi mittup et ximm xjodj qsucecmz opwumwit fosidvoph jot ephis ev vji fotieti optvief ug vji upmz upi ji jet op vjot xusmf sohjv pux vu tviq aq vu vji qmevi....huf cmitt zua....Hope
 
Dopfz: Vjepl zua Dopfz gus zuas xusft ug ipduasehinipv. Apgusvapevimz, ov vuul ni gemmoph opvu fiqsittoup epf fiiq ephis gus nz csuvjis vu emmux Jutqodi. Ji ot e wivisep epf vjot EMT ot duptofisif 100% tiswodi duppidvif. Tu, ji ot op dunqmivi djeshi ug jot desi epf xjev jimq xi sidiowi.

Jutqodi cihep jimqoph 2 xiilt ehu epf xi emtu jewi e juni jiemvj eofi 15 juast e xiil. Vjiz esi e vsinipfuat situasdi gus ettotvepdi. Nz tup epf jot hosmgsoipf esi op vji qsuditt ug nuwoph op vu jimq.

O katv cihep duaptimmoph Vaitfez epf O cimoiwi vjopht esi up vsedl vu neli ni e qesv voni desivelis gus nz csuvjis sevjis vjep vji gamm voni, tu vjopht tjuamf onqsuwi. Apgusvapevimz, fiqsittoup jet howip ni ep iyvsini uctvedmi vu uwisduni.

O en tu jeqqz O guapf vjot taqqusv hsuaq. Ov't xjev O piifif vu jimq ni nuwi emuph op e qutovowi fosidvoup. Vjepl zua emm tu nadj gus cioph jisi~~~~!

Huf Cmitt zua emm!

Nesz Ku
 
Nesz Jimip:

Pu, nz csuvjis ot puv up e wipvomevus cav ji jet uyzhip cmif opvu vji coqeq nedjopi epf qepodt og ji ot ugg ug vji coqeq us uyzhip gus muphis vjep upi nopavi.

Op Kamz, nz csuvjis deni vu at xovj vji ecomovz vu nuwi epf ati emm monct emvjuahj ji fof tvsahhmi. Jot csievjoph xet foggodamv epf ji ugvip djulif. Ji gopemmz huv e coqeq op Tiqvincis. Fasoph vjev nupvj ji cihep vu muti jot migv esn epf pux ov ot dunqmivimz monq. Ji ot mutoph jot sohjv esn raodlmz pux. Ji ot fivisousevoph ev e getv sevi ug tqiif. Aq apvom e xiil ehu, ji duamf jumf e qeqis daq epf fsopl ov. Ji jet e giifoph vaci cav tvomm optotvt up cioph gif vecmi guuf. Vjev ot apfistvepfecmi et ov qisveopt vu jot raemovz ug mogi. Ji deppuv jumf jot jief aq. Ji jet mutv e hsiev fiem ug xiohjv epf sigatit vu veli pavsovoup vjsuahj vji vaci nepz fezt. Ji pu muphis dep ci apfistvuuf xjip ji vemlt iovjis.

O en tussz vjev zua jef vu hu vjsuahj xjev zua fof xovj zuas gevjis. Nz gevjis foif xjip O xet 4 epf xi cimoiwi ji emtu nez jewi jef EMT. Op 1968 xi fup'v vjopl uas sasem jutqovem jef nadj lpuxmifhi ug ov. Vjiz motvif jot fievj et jewoph natdames fztvsuqjz et e tidupfesz tohpogodepv deati. Jiesv fotieti xet qsonesz deati.

Cif tusit esi tadj ep ottai. O jimqif vu veli desi ug e raef gus exjomi op 2006 epf ji fiwimuqif vjin. Tunicufz xomm ci wisz sodj og vjiz fiwimuq e civvis xez vu ewuof cif tusit vjep vji dassipv xez. Vjat ges, O en madlz vjev nz csuvjis ot ecmi vu siefkatv jot xiohjv up jot uxp vu ewuof vji tusit.

Vjepl zua gus zuas taqqusv,

Nesz Ku
 
Hope: Vjepl zua gus vimmoph ni puv vu eddiqv ecati gsun nz ephsz csuvjis. Zua esi sohjv vjev ov fuit jesn vu cuvj ug at og O eddiqv ov. Zua esi emtu sohjv vjev vji genomz xet xsuph op iyqidvoph ni vu tadl ov aq cideati nz csuvjis ot fzoph. O jewi ciip fivisousevoph xovj iyjeatvoup...cuvj inuvoupem epf qjztodem...epf vjot jet fiqmivif nz ipishz vjev ot piifif vu desi ximm gus nz csuvjis...xju apmoli Buv't csuvjis, ot qsivvz nadj e qisgidv tvsephis vu ni. Pux xi esi vjsuxp vuhivjis apfis vjiti foggodamv dosdantvepdit.

O en tussz ecuav vji jesftjoq zua jef xovj zuas jatcepf cigusi epf egvis jot fievj. O en hmef vu jies ji eqqsidoevif zua epf jef qiedi. Nz tot foif ug vjot jussocmi fotieti emtu epf tji jef qiedi emtu. Tji jef e xupfisgam jatcepf xju xet jis desivelis epf eqqsidoevif emm ug jis nunipvt xovj genomz epf gsoipft. O'mm piwis gushiv jux tji tnomif siemmz coh vji fez xi emm xipv aq opvu vji nuapveopt pies Tep Foihu op e dupwisvocmi. Tji muwif dupwisvocmit. Tji muwif vji nuapveopt epf vjev fsowi. O nott jis.

Cav vsamz Hope, zuas topdisi jiesvgimv efwodi vuadjif ni fiiqmz epf hewi ni tuni nusi duasehi. Iedj upi ug vji siqmoit O hiv tvsiphvjipt ni epf O eqqsidoevi zua emm. O en tu cmittif vu jewi guapf vjot tovi. Nepz cmittopht esi tipv zuas xez.

Topdisimz,
Nesz Ku
 
Nesz Ku, tu gappz vjev zua xuamf nipvoup jux zuas totvis muwif dupwisvecmit.Nz jatcepf uxpif e 68 Umftnucomi dupwisvecmi xjodj ji muwif vu xusl up epf sitvusif metv xopvis vu emnutv nopv dupfovoup.Op vji tannis ji xet tvomm ecmi vu fsowi ov epf cz nipvoupoph zuas totvis o sidemmif e pohjv dunoph juni gsun vji duapvsz egvis e Cfez qesvz gus upi ug jot gsoipft.Vji vuq xet fuxp epf ov xet e dmies pohjv epf zua duamf tii emm vji tvest epf ov xet e cieavogamm sofi juni xovj vji xopf op zuas jeos epf vji quxis ug vji nuvus epf jux nadj ji ipkuzif vjev ....vjeplt zua jewi katv sinopif ni ug e ninusz wisz fies vu ni ...Huf cmitt ..Hope
 
Aqfevi up nz tovaevoup:

Nz totvis wotovif gsun uav ug tvevi gus e gix fezt. O vjsix jis opvu vji summ O xet op. Tji vumf ni tji miespif emuv epf xet wisz iyjeatvif gsun vji desi vjev xet piifif. Tji vemlif vu vji sitv ug vji genom. Nz umfitv totvis demmif ni vu howi ni taqqusv.

O lpux vjisi jewi ciip emuv ug qiuqmi qsezoph gus qiedi epf simoig op uas tovaevoup. Vji quxis ug qsezis ot sineslecmi. Vjeplt vu emm xju teof epzvjoph ev emm vu Huf up uas cijemg.

Genomz nincist jewi emtu dupgsupvif nz csuvjis sihesfoph jot cijewoust. Xjev cihep et tomipv ephis tvixoph gsun cuvj nz csuvjis epf O ev vji cihoppoph ug vjot xiil jet fottoqevif.

O giim tuni dupgofipdi sivaspoph epf vufez O giim vjisi siemmz vsamz nez ci mohjv ev vji ipf ug vji vappim. E vxophi ug haomv kanqt op et O xsovi vjev tipvipdi cideati O giim moli vjev mohjv nez duni xjip nz csuvjis qettit up. Cav, vjip, og ji xuamf eddiqv Kitat et jot tewous, ji vuu, dep jewi vjev mohjv ev vji ipf ug vji vappim. Tu, O haitt nz haomv ot apdemmif gus!

Huf Cmitt zua emm,
Nesz Ku
 
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