Eu estava no meu armário esta manhã, olhando em volta como se eu nunca tivesse estado lá. Eu não conseguia lembrar o que eu estava fazendo, porque, ou o que eu deveria fazer em seguida. Então, eu ainda estava de pé, esperando por ele para vir para mim. Momentos antes eu tinha sido violentamente ofegante como um animal selvagem, curvado de dor e abraçando meu próprio corpo. Eu simplesmente subido para se vestir para o dia, mas apenas como faz todos os dias da minha vida em diferentes graus, a minha doença me fez lembrar que estava no comando.
Lágrimas rolaram. Isso acontece muito também. Eu nem sempre tenho palavras mais quando eu quero expressar o que estou sentindo por isso a minha alma expressa isso por mim. Eu esqueço. Muito.
Não é a fibromialgia
I foi diagnosticado com fibromialgia em meus 30 anos por um jovem médico que claramente tinha acabado de aprender a palavra em uma festa do pijama na Júnior Doutor Camp.
“Você vai crescer cada vez mais fraco, até que finalmente os músculos atrofiam. O seu tempo de vida será drasticamente reduzido, e você vai viver a sua anos de cadeira de rodas final, obrigado.”
Ao longo dos anos eu iria experimentar períodos esporádicos de melhoria e então eu decidi que a fibromialgia foi o diagnóstico besteira, e eu maldita certeza não tê-lo.
Então eu ia ficar muito doente novamente.
meus sintomas
Meus braços e pernas dormentes, quase sempre os dois ao mesmo tempo, mas às vezes não. De qualquer maneira, eu cair, bater nas coisas, perder o equilíbrio. Nem sempre posso dizer onde meu pé está batendo, e quando isso acontece você pensaria que os nossos pisos são feitos de mastigado chiclete.
Minhas articulações endurecem de forma tão severa que os meus tornozelos não quer dobrar e meus cotovelos sempre me sinto como se alguém bater-lhes com um martelo enquanto eu dormia.
Eu me movo como Frankenstein, só que não tão graciosamente.
Meus músculos doer até o osso de uma forma que parece que eu estou sempre lutando contra influenza. Ele nunca pára. Sempre.
Mas, de longe, a pior coisa que eu tenho vivido com por tanto tempo é fadiga extrema. Tenho pensado muitas vezes sobre o que palavra que eu poderia usar para descrever o que se sente, e eu sempre vir acima de vazio. Tudo o que posso dizer é o tipo de fadiga eu vivo a cada dia que é o que eu acredito que deve sentir a morrer. Quando é muito ruim, os médicos notar uma paralisia que vem sobre meu rosto, e eu tenho dificuldade até mesmo em pé. Eu não posso descansar o suficiente para se recuperar. Eu digo que é como se alguém estivesse me embalsamamento.
Isso pode acontecer se eu estou sentado em uma cadeira com os pés para cima, ou pode acontecer depois que eu joguei com meus grandmonkeys. Não importa o que eu faço. É sempre lá.
Eu já disse a todos os médicos que eu vi, “Eu sei que eu não vou viver muito mais tempo. Eu estou morrendo.”Eu conheço que por um longo tempo. Nos últimos anos eu teria rajadas de semanas ou meses de energia que permita-me a comportar-se normalmente. Mas, eu sempre soube que eu estava morrendo. Nos últimos três anos eu realmente senti a minha vida se esvaindo. Houve quase nenhuma explosões de energia ou bons tempos – apenas me esperando para ir dormir e não acordar.
Eu percebi que nos meus resultados da autópsia eles descobrir o que realmente estava errado comigo e “o mundo” saberia que eu não era louco. Bem, pelo menos no que se refere à minha saúde.
Ao longo das décadas eu tenho visto por novos médicos, e com cada veio montes de novas contas médicas. “Você está apresentando como você tem MS,” eles todos dizem, e em seguida, após a mesma bateria de testes foi o mesmo diagnóstico.
Fibromialgia e Síndrome de Fadiga Crônica.
“Eu não acredito que qualquer um desses é um diagnóstico,” Eu diria a eles. “Você está me rotular com essas palavras, porque eu sou uma mulher, e porque você não sabe mais o que fazer comigo.”
Quer irritar um médico? Diga-lhes que acho que eles não sabem o que estão falando. Uma particularmente arrogante filho da puta me disse: “Você parece que você prefere que eu teria dito que você tem MS.”
Sei que as pessoas que sofrem unspeakably com Esclerose Múltipla. É vicioso. Mas sim. Às vezes eu teria tomado o diagnóstico dessa doença terrível, se só para ter uma “coisa real” que explica por que tantas vezes não pode andar dez pés de minha cadeira para o banheiro mais próximo sem segurar em algo. As pessoas acreditam que você quando você diz que tem MS. Eles entendem (o melhor que puder), que você não está bem e que você não é um mentiroso que está em busca de atenção.
Não é a mesma mentalidade em relação a Fibro e CFS.
Lembro-me de alguém que eu respeito profundamente que de repente fez uma proclamação no Facebook sobre mulheres e fibromialgia. Ir em uma dieta, fazer algum exercício e crescer resume muito bem o sentimento. Não havia nenhuma maneira que eu poderia dizer às pessoas o quão doente eu estive com medo que eles pensam de mim como alguém que não estava se esforçando o suficiente para ser saudável, ou pior, tê-los acho que foi tudo na minha cabeça.
Só para ter certeza, eu fui ver um psiquiatra. “Sher, você não está louco. Isso não está na sua cabeça “, disse ele. Para seu crédito, ele também disse: “Eu poderia prescrever Lyrica para você, mas se eu fizer isso é o mesmo que dizer que eu acredito que você foi dito sobre o que está acontecendo e eu não. Você tem que manter empurrando até chegar à pessoa que pode ajudá-lo.”
Bem-intencionados amigos próximos e não tão bem-intencionada parentes tinha mais a dizer quando eu ia levá-los para a minha confiança sobre como doente eu estava. Para ser justo, há apenas uma pessoa que sabe o quão ruim eu sou. Algumas pessoas na minha vida saber um pouco, e alguns um pouco mais, mas ninguém sabe a extensão de apenas como maldito ruim tem sido além do meu parceiro.
O que as pessoas me dizem
Você precisa cortar glúten. Você precisa cortar açúcar. Você precisa empurrar através dele. Você precisa exercer. Você deve orar. Você precisa se esforçar mais para se forçar a fazer coisas que são desconfortáveis. Meu amigo conhece alguém que conhece alguém que tem fibromialgia e eles estão vivendo a sua vida, não lançando em torno de deixar isso acontecer.
E as piores coisas que foram ditas? As coisas que eu não posso sair da minha cabeça e que me trazem às lágrimas mesmo enquanto escrevo?
“Você está pensando em estar doente no próximo mês?”
“A sério? Não me diga que você está doente de novo. Mesmo? É engraçado como você está doente quando eu preciso de algo de você.”
Finalmente, um diagnóstico
Um conhecido caiu-me uma nota de um dia em que me encorajou a ver um doc doença infecciosa aqui no Centro-Oeste. Um membro próximo da família dela foi feito mais saudável por este homem e ela sentia que devia pelo menos vê-lo. Levou meses para entrar, e eu estava profundamente cético.
O dia chegou e eu trouxe meu parceiro comigo para me ajudar a expressar o que estava acontecendo, fazer perguntas inteligentes, e lembre-se tudo. Quando você perde suas palavras e você esquece as coisas da maneira que eu faço, você parar de ir a consultas sozinho. Você parar de ir a lugar nenhum sozinho.
Quando ele entrou, eu soube imediatamente que algo estava diferente. Ele me disse que estava permitindo que duas horas para a visita. Eu nunca tinha tido mais de minutos com qualquer médico. Ele perguntou-me perguntas sobre a minha vida atual, e meu passado. Em muitos casos, antes que eu pudesse responder, ele me diria que ele suspeitava minha resposta ia ser. Ele estava sempre certo.
Ele explicou sua pesquisa sobre Fibromialgia e Síndrome de Fadiga Crônica e como ela se tornara sua paixão de condução há muitos, muitos anos. Ele nos falou sobre sua pesquisa , os dois papéis que ele publicados e a terceira em que ele estava trabalhando atualmente.
“Eu sou 95% positivo, Sher, que quando nós testar sua urina você vai ser positivo para as micotoxinas – bolor negro.”
Na minha vida, nenhum médico fez uma declaração tão ousada. Nenhum médico de qualquer tipo jamais havia sido tão confiante para usar esse tipo de linguagem antes dos testes.
“É com boa razão que você me diga que você sabe que você está morrendo. Isso é exatamente o que está acontecendo. As micotoxinas estão matando você em um nível celular.”
E, em seguida, ele disse duas pequenas frases que mudou tudo.
“Posso te ajudar. Vou te ajudar.”
Eu chorei, e quando no final do nosso tempo juntos, ele se levantou para sair, ele abriu os braços para mim. “Por aqui, vamos dar abraços.”
Cheguei em casa e orou para que eu seria positivo para o bolor negro. Há uma oração que eu nunca imaginei.
Quando os testes voltou, cerca de duas semanas, recebi uma cópia dos meus resultados. Não era em preto e branco. bolor negro. Micotoxinas. “Você tem uma fábrica de bolor negro vivendo em sua cavidade sinusal, Sher”, disse médico.
Poderia ter começado como uma menina muito jovem no Sul. Poderia ter acontecido todos os anos que vivi em Kentucky. Poderia ter sido na Alemanha. Ele definitivamente poderia ter sido agravado novamente por toda a inundações e casas antigas no Sudeste Kansas.
“Você não tem que estar vivendo em uma casa com bolor negro nas paredes para que isso aconteça com você”, disse ele.
Isso tem sido há algumas semanas agora, e todos os dias eu fazer o tratamento que ele está prescrito. Isso equivale a inalação de um medicamento para matar o molde. Não há nenhuma maneira de saber quanto tempo vai demorar, mas eu não me importo. Se demorar um ano eu vou fazer isso todos os dias e esperar para que isso seja terminado. Os únicos efeitos colaterais que eu estou tendo atualmente são que eu estou tão enjoado quase todo o tempo, e o cansaço ficou ainda pior … se você pode imaginar uma coisa dessas.
Estou esperando um telefonema de sua enfermeira agora sobre essas coisas, mas eu disse a mim mesmo a náusea é a partir do tratamento descendo minha garganta para o estômago. E a fadiga piora? Bem, eu costumava dizer aos meus bebês que quando seu corpo está trabalhando duro para torná-lo bem, você tem para descansar, porque é preciso muita energia para a cura. Há uma guerra dentro do meu corpo agora e eu só vou ter que fazer o melhor que posso esperar para fora.
Pelo menos sabemos que o inferno esta invisível, monstro torturante é e não há esperança agora. Eu quero ser saudável novamente. Eu quero levar meus grandmonkeys em passeios. Eu quero correr. Eu quero beber café em Portland, e dormir em uma casa na árvore na Nova Inglaterra, e beber grande vinho com amigos em Chicago, e comer a melhor pizza em Nova York, e tirolesa em algum lugar exuberante e quente. Eu quero ser eu novamente.
Tenho dois filhos incrivelmente amorosa e de suporte e um homem no meu canto que diz coisas como: “Eu prefiro ter vida com você – mesmo quando você não está bem – que a vida sem você. Nenhuma pergunta.”
não pode sair agora. Eu sou três pés de sol.
Se você está querendo saber sobre envenenamento por bolor negro, eu vou deixá-lo com as seguintes informações:
Os sintomas bolor negro
Por favor, note que esta é uma lista exaustiva. Você não tem que ter todos os sintomas único a ter uma doença relacionada molde.
- Dor abdominal
- Dores e dores
- Agressão e outras alterações de personalidade
- Ansiedade
- Sangramento nas gengivas
- Hemorragia no cérebro
- tendência para hemorragias
- O sangue não coagule adequadamente
- visão embaçada e visão piora
- interrupção de medula óssea
- névoa do cérebro
- Sensação de queimação na boca
- Dor no peito
- Fadiga crônica
- tipo sintomas de resfriado ou gripe ou resfriados recorrentes
- Coma
- Confusão
- tosse
- rastejando pele
- Danos ao coração
- Morte
- Depressão
- Dermatite
- Diarréia
- Dificuldade ao respirar
- Dificuldade de concentração e atenção
- Desorientaçao
- Tontura
- sonolência
- lesões oculares
- inflamação ocular e de dor
- Febre
- Perda de cabelo
- alucinações
- Dores de cabeça
- Perda de audição
- inflamação do coração
- Hemorragia – hemorragia interna
- imunossupressão
- capacidade de aprendizagem prejudicada
- infecções reoccurring
- Arritmia cardíaca
- comichão no nariz
- Icterícia (amarelamento dos olhos e da pele)
- dor nas articulações
- rigidez articular
- Doença hepática
- Pressão sanguínea baixa
- Mal-estar
- problemas de perda de memória e memória
- Dor muscular
- Náusea
- nariz sangra
- entorpecimento
- Edema pulmonar
- hemorragia pulmonar
- olhos vermelhos ou avermelhados
- Coriza
- Apreensão
- disfunção sexual
- balançando
- Choque
- Encurtado tempo de atenção
- reflexos desacelerou
- Dor de garganta
- Entupido, nariz entupido
- formigamento
- trêmulo
- vómitos
- Vomitando sangue
- Fraqueza
- perda de peso, anorexia
- pieira
Minha esperança é que você se sentir melhor muito em breve. Por favor, saibam que, enquanto eu não posso responder a cada comentário, eu li todos eles e meu coração dói por cada um de vocês que estão sofrendo.
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