Ce n’est pas la fibromyalgie. Très probablement vous n’êtes pas au courant

Je me tenais dans mon placard ce matin, regardant autour comme si je n’avais jamais été là. Je ne pouvais pas me rappeler ce que je faisais, pourquoi, ou ce que je devrais faire ensuite. Alors je me tenais immobile, attendant qu’il vienne à moi. Quelques instants avant j’avais été violemment haletant comme un animal sauvage, penché dans la douleur et étreindre mon propre corps. Je suis simplement allé à l’étage pour s’habiller pour la journée, mais tout comme il le fait tous les jours de ma vie à des degrés divers, ma maladie m’a rappelé qui était en charge.

Les larmes sont bien. Ça arrive souvent. Je n’ai pas toujours de mots plus quand je veux exprimer ce que je ressens pour que mon âme l’exprime pour moi. J’ai oublié. Beaucoup.

Ce n’est pas la fibromyalgie

J’ai d’abord été diagnostiqué avec la fibromyalgie dans mon début des années 30 par un jeune médecin qui avait clairement juste appris le mot sur une soirée pyjama au camp de médecin Junior.

 

“vous serez plus faible et plus faible jusqu’à ce que finalement vos muscles s’atrophient.” Votre durée de vie sera considérablement raccourci, et vous vivrez vos dernières années en fauteuil roulant lié.

 

Au fil des ans, j’aurais vécu des périodes d’amélioration sporadiques et j’avais donc décidé que la fibromyalgie était un diagnostic de conneries, et je Damn sûr ne l’avait pas.

 

Alors je deviendrais vraiment malade à nouveau.

Mes symptômes

Mes bras et les jambes vont engourdis, presque toujours les deux en même temps, mais parfois pas. Dans tous les cas, je tombe, je me Cogne, je perds mon équilibre. Je ne peux pas toujours dire où mon pied est frappant, et quand cela se produit, vous pensez que nos planchers sont faits de chewing-gum à bulles.

 

Mes articulations raide si sévèrement que mes chevilles ne veulent pas plier et mes coudes se sentent toujours comme quelqu’un les frapper avec un marteau pendant que je dormais.

 

Je bouge comme Frankenstein, mais pas aussi gracieusement.

 

Mes muscles me font mal à l’os d’une manière qui me donne l’impression d’être toujours en lutte contre la grippe. Ça ne s’arrête jamais. Jamais.

Mais, de loin la pire chose que je vis avec pour est si longue fatigue extrême. J’ai pensé si souvent sur ce mot que je pourrais peut-être utiliser pour décrire ce qu’on ressent, et je suis venu toujours vide. Tout ce que je peux vous dire est le genre de fatigue que je vis chaque jour est ce que je crois qu’il doit se sentir comme à mourir. Quand il est très mauvais, les médecins remarquer une paralysie qui vient sur mon visage, et j’ai du mal à même debout. Je ne peux pas assez de repos pour récupérer. Je dis que c’est que quelqu’un me embaumement.

Cela peut arriver si je suis assis sur une chaise avec mes pieds, ou il peut arriver après que je l’ai joué avec mes grandmonkeys. Peu importe ce que je fais. Il est toujours là.

Je l’ai dit à chaque médecin, je l’ai vu, « Je sais que je ne vais pas vivre beaucoup plus longtemps. Je suis en train de mourir. » Je connais que depuis longtemps. Dans les années passées, j’aurais rafales de semaines ou mois d’énergie qui me permettraient de se comporter normalement. Mais, je savais toujours que je mourais. Au cours des trois dernières années, je l’ai vraiment senti ma vie se dérober. Il y a eu presque pas des rafales d’énergie ou de bons jours – me attendant d’aller dormir et ne pas se réveiller.

Je me suis dit que mes résultats de l’autopsie qu’ils avaient découvrir ce qui était vraiment mal avec moi et « le monde » ne savent que je n’étais pas fou. Eh bien, au moins en ce qui a trait à ma santé.

À travers des décennies que j’ai vu par de nouveaux médecins, et à chaque venue des monticules de nouvelles factures médicales. « Vous présentez comme vous avez MS, » ils avaient tous disent, puis après la même batterie de tests sont le même diagnostic.

La fibromyalgie et le syndrome de fatigue chronique.

« Je ne crois pas que ce soit des personnes est un diagnostic, » Je dirais que pour eux. « Vous me étiquetez avec ces mots parce que je suis une femme, et parce que vous ne savez pas quoi faire d’autre avec moi. »

Vous voulez emmerder un médecin? Dites-leur que vous pensez qu’ils ne savent pas ce dont ils parlent. Un fils de pute particulièrement culotté m’a dit: « Tu as l’air comme vous préférez, je l’aurais dit que vous avez MS. »

Je connais des gens qui souffrent affreusement de sclérose en plaques. Il est vicieux. Mais oui. Parfois, je l’aurais pris le diagnostic de cette maladie terrible si seulement d’avoir une « vraie chose » qui explique pourquoi je si souvent ne peut pas marcher dix pieds de ma chaise longue à la plus proche salle de bain sans se tenir à quelque chose. Les gens que vous croyez quand vous dites que vous avez MS. Ils comprennent (comme ils le peuvent), que vous n’êtes pas bien et que vous n’êtes pas un menteur qui cherche l’attention.

Ce n’est pas le même état d’esprit en ce qui concerne Fibro et CSA.

Je me souviens quelqu’un que je respecte profondément qui a soudainement fait une proclamation sur Facebook au sujet des femmes et Fibromyalgie. Allez sur un régime alimentaire, faire de l’exercice et grandir résume assez bien le sentiment. Il n’y avait aucun moyen que je pourrais dire aux gens comment malade, je suis allé de peur qu’ils penseraient de moi comme quelqu’un qui ne cherche pas assez dur pour être en bonne santé, ou pire, demandez-leur pensent qu’il était dans ma tête.

Juste pour être sûr, je suis allé voir un psychiatre. « Sher, vous n’êtes pas fou. Ce n’est pas dans votre tête « , at-il dit. À son crédit, il « , a dit aussi que je pouvais prescrire Lyrica pour vous, mais si je le fais que c’est la même chose que dire je crois ce que vous avez dit au sujet de ce qui se passe et je ne. Vous devez continuer à pousser jusqu’à ce que vous arriviez à la personne qui peut vous aider « .

Des amis bien intentionnés proches et pas si bien intentionnés parents avaient plus à dire quand je les prendrais dans ma confiance sur la façon dont je me sentais pas bien. Pour être juste, il n’y a qu’une seule personne qui sait à quel point je suis. Certaines personnes dans ma vie connaissent un peu, et un peu plus, mais on ne sait pas dans quelle mesure à quel point sacrément mauvais, il a été au-delà de mon partenaire.

Ce que les gens me disent:

Vous devez découper le gluten. Vous devez couper le sucre. Vous devez pousser à travers elle. Vous devez exercer. Vous devez prier. Vous devez essayer plus difficile de vous forcer à faire des choses qui sont mal à l’aise. Mon ami connaît quelqu’un qui connaît quelqu’un qui souffre de fibromyalgie et ils vivent leur vie, et non pas autour de la pose de le laisser se produire.

Et les pires choses qui ont été dites? Les choses que je ne peux pas sortir de ma tête et qui me faire pleurer comme j’écris?

« Est-ce que vous prévoyez d’être malade le mois prochain? »

“Sérieusement? Ne me dites pas que vous êtes de nouveau malade. Vraiment? Il est drôle comment vous êtes malade quand je besoin de quelque chose de vous « .

Enfin, un diagnostic

Une connaissance m’a laissé une note un jour m’a encouragé à voir ici dans le Midwest une doc maladies infectieuses. Un membre de la famille proche de la sienne a été rendue plus saine par cet homme et elle a senti que je devrais au moins le voir. Il a fallu des mois pour y entrer, et je suis profondément sceptique.

Le jour est venu et j’ai apporté mon partenaire avec moi pour me aider à exprimer ce qui se passait, poser des questions intelligentes, et rappelez-vous tout. Lorsque vous perdez vos mots et vous oubliez les choses comme je le fais, vous arrêtez d’aller aux rendez-vous seul. Vous vous arrêtez d’aller nulle part seule.

Quand il est entré, je savais tout de suite quelque chose était différent. Il m’a dit qu’il laissait deux heures pour notre visite. Je ne l’avais jamais eu plus de minutes avec un médecin. Il m’a posé des questions sur ma vie actuelle, et mon passé. Dans de nombreux cas, avant que je puisse répondre, il me disait ce qu’il soupçonnait ma réponse allait être. Il avait toujours raison.

Il a expliqué ses recherches sur la fibromyalgie et le syndrome de fatigue chronique et de la façon dont il était devenu sa passion de conduire depuis de nombreuses années. Il nous a parlé de sa  recherche , les deux documents qu’il avait publiés et le troisième sur lequel il travaille actuellement.

« Je suis positif 95%, Sher, que lorsque nous testons votre urine, vous serez positif pour mycotoxines – moisissure noire. »

Dans ma vie, aucun médecin a fait une telle déclaration audacieuse. Aucun médecin de toute nature avait jamais été si confiant d’utiliser cette langue avant les tests.

« Il est avec raison que vous dites-moi, vous savez que vous êtes en train de mourir. C’est exactement ce qui se passe. Les mycotoxines vous tuent au niveau cellulaire « .

Et puis il a dit deux petites phrases qui a tout changé.

“Je peux vous aider. Je t’aiderai.”

Je pleurais, et quand à la fin de notre temps ensemble, il se leva pour partir, il a ouvert ses bras larges pour moi. « Par ici, nous donnons des câlins. »

Je suis rentré et je priai que je serais positif pour la moisissure noire. Il y a une prière que je ne l’imaginais.

Lorsque les tests sont revenus, environ deux semaines, j’ai reçu une copie de mes résultats. Il était en noir et blanc. Moisissure noire. Mycotoxines. « Vous avez une usine de moisissure noire vivant dans votre cavité des sinus, Sher, » médecin a dit.

Il aurait pu commencer comme une très jeune fille dans le Sud. Il aurait pu se produire tous les ans, je vivais dans le Kentucky. Il aurait pu être en Allemagne. Il pourrait certainement avoir été aggravée encore par tous les inondations et les vieilles maisons du sud-est du Kansas.

« Vous ne devez pas vivre dans une maison avec de la moisissure noire sur les murs pour avoir cela vous arrive, » dit-il.

Qu’il ya fait plusieurs semaines maintenant, et chaque jour je prends le traitement qu’il prescrit. Il revient à l’inhalation d’un médicament pour tuer le moule. Il n’y a aucun moyen de savoir combien de temps cela prendra, mais je ne se soucient pas. Si cela prend un an, je vais le faire tous les jours et attendre que ce soit terminé. Les seuls effets secondaires que je vais avoir actuellement sont que je suis tellement nauséabonde presque tout le temps, et la fatigue est devenue encore pire … si vous pouvez imaginer une telle chose.

Je suis en attente d’un appel de son infirmière en ce moment au sujet de ces choses, mais je me suis dit la nausée est du traitement en cours d’exécution dans ma gorge à l’estomac. Et la fatigue aggravation? Eh bien, je l’habitude de dire à mes enfants que quand votre corps travaille dur pour vous faire bien, il faut se reposer, car il faut beaucoup d’énergie pour la guérison. Il y a une guerre à l’intérieur de mon corps maintenant et je vais juste devoir faire le mieux que je peux l’attendre dehors.

Au moins, nous savons ce que l’enfer ce monstre invisible, est tortueuse et il y a espoir maintenant. Je veux être à nouveau en bonne santé. Je veux prendre mes grandmonkeys sur les sorties. Je veux courir. Je veux boire du café à Portland, et dormir dans une cabane perchée en Nouvelle-Angleterre, et boire un grand vin avec des amis à Chicago, et manger la meilleure pizza à New York, et tyroliennes dans un endroit verdoyant et chaleureux. Je veux être moi à nouveau.

J’ai deux enfants incroyablement affectueux et de soutien et un homme dans mon coin qui dit des choses comme: « Je préfère avoir la vie avec vous – même si vous n’êtes pas bien – que la vie sans toi. Pas de question.”

Ne peut pas quitter maintenant. Je suis trois pieds de soleil.

Si vous vous interrogez sur l’empoisonnement de la moisissure noire, je vous laisse avec les informations suivantes:

Les symptômes de la moisissure noire

S’il vous plaît noter que ceci est une liste exhaustive. Vous ne devez pas avoir tous les symptômes unique d’avoir une maladie liée à la moisissure.

  • Douleur abdominale
  • Maux et douleurs
  • L’agression et d’autres changements de personnalité
  • Anxiété
  • Saignement des gencives
  • Saignement dans le cerveau
  • tendance aux saignements
  • Le sang ne coagulation correctement
  • vision floue et détérioration de la vision
  • perturbation de la moelle osseuse
  • brouillard cerveau
  • Sensation de brûlure dans la bouche
  • Douleur de poitrine
  • Fatigue chronique
  • symptômes de type rhume ou la grippe ou le rhume récurrents
  • Coma
  • Confusion
  • Tousser
  • peau rampants
  • Les dommages au coeur
  • Décès
  • Dépression
  • Dermatite
  • La diarrhée
  • Difficulté à respirer
  • Difficulté à se concentrer et faire attention
  • désorientation
  • Vertiges
  • Somnolence
  • des lésions oculaires
  • inflammation des yeux et la douleur
  • Fièvre
  • Chute de cheveux
  • hallucinations
  • Des maux de tête
  • Perte auditive
  • inflammation cardiaque
  • Hémorragie – hémorragie interne
  • immunosuppression
  • capacité d’apprentissage avec facultés affaiblies
  • Les infections récurrentes
  • Rythme cardiaque irrégulier
  • nez qui démange
  • Jaunisse (coloration jaune des yeux et la peau)
  • Douleur articulaire
  • Raideur articulaire
  • Maladie du foie
  • Pression artérielle faible
  • Malaise
  • problèmes de perte et de la mémoire mémoire
  • Douleur musculaire
  • La nausée
  • saignements de nez
  • Engourdissement
  • Œdème pulmonaire
  • L’hémorragie pulmonaire
  • Les yeux rouges ou injectés de sang
  • Nez qui coule
  • Saisie
  • Dysfonction sexuelle
  • Tremblement
  • Choc
  • durée d’attention raccourcies
  • réflexes ont ralenti
  • Gorge irritée
  • Nez bouché, bloqué
  • picotements
  • Tremblant
  • Vomissement
  • Vomissant du sang
  • La faiblesse
  • La perte de poids, anorexie
  • sifflante

 

Mon espoir est que vous vous sentez mieux très bientôt. S’il vous plaît sais que si je ne peux pas répondre à tous les commentaires, je les lis tous et mon cœur me fait mal pour chacun d’entre vous qui souffrent.

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