Hiding when I am sick is not a good thing/Esconder que estoy enferma no es algo bueno

This April will be my 25th year anniversary living with HIV. The last 2 years of living with HIV have been the hardest for me and many do not know this. I don’t like to show or tell people when I feel ill, and it is very frustrating for me to know that I am doing everything I am supposed to and then some, and still feel like I am a baby - exposure to any virus or bug and I am sick once again. It seems I haven’t been able to catch a break as far as getting ill and I have written before about feeling stuck…never completely ill for a hospitalization and never 100 percent healthy to feel good. For those of you that know me, you know I am a hard worker and when I have energy I get so happy that I run myself out!! I know I have to take it easy, but it seems like I am feeling more weak more days, so those days that I am ok I want to live to the fullest and live intensely!! I am so grateful to my mother that prays for me daily and motivates me from far away. I don’t like to tell her I am not feeling well because it worries her. :( But in those moments of despair I finally tell her “Where is the God you pray to???” And I get in this dark hole I do not like. :( I am very spiritual and I get these angry feelings and have these conversations with God and tell him, “Please!!! I know that I brought this on myself, but pleaseeeeee where are you? When are you going to heal me or just take me? Why do we have to suffer???” I know as always there are people a million times worse than me. I am blessed...but no one else’s pain is less than. We all have our own sorrows and cross that we carry. My problem is not having HIV, or taking my meds, etc., etc. My problem is doing everything I can to be healthy and still getting sick monthly with some type of infection, etc. So many antibiotics all the time, and just being so tired and fatigued to even do normal things. People that have their health just don’t know how lucky they are! Please listen to me if you are newly diagnosed!!! Do not wait as I did for 10 years to have no T cells and get sick to start treatment. The sooner the better! And if you do not have HIV, pleaseeeeeeeeeee protect yourself! This bitch of HIV/AIDS is horrible and it is no joke! Most long-term survivors like myself go through this...it’s not easy. HIV with aging is a bitch, really.

I decided to be a normal human and I asked for help yesterday from an admin I highly respect in my international support group in FB, Martha Lang. She made me realize that all that I am preaching to others, I am not doing for myself. I need advice, support and need to start listening to my body again. I am pro-natural and alternative therapies and there are some things I am lacking like protein because I don’t really eat things with much protein and also some other things I am very happy to try. It is not normal for me to be undetectable for almost 14 years (which is when I started meds) and for my T cells and percentage to be so low. I have never been above 450 and now it’s in the 300s. Mind you I don’t smoke, don’t really drink, I eat super healthy, drink fluids, exercise, take my meds every day etc., etc. There is a missing link as my friend Martha told me. And there is! I need to ask my body questions and ask it what it needs and I will do it.

I also feel bad sometimes when I complain about not feeling good, because many people that follow me find their hope through me, and I feel like they will get scared if they see me break down or feeling vulnerable. But I have to think of me. I can’t be good to help if I am in turmoil myself and I am human!

I am also so thankful for my wife Lisa who is there for me 24/7. But at the same time I feel she deserves to live a normal life with someone that is healthy. I feel guilty, but she says and reminds me that I am worthy and that she chose to go through this with me. <3 How special is that? For those that judge me (us) for loving each other, think before you speak! This is not about sex. This is pure and unconditional love! It doesn’t matter what gender we are.

I have decided I am going to continue asking for help and showing the reality of what living with HIV is for me! I can’t hide anymore and I will not do that to myself. I will fight till the end.

I accept I am vulnerable.

I accept whatever life has for me.

I accept that I can get weak sometimes and this doesn’t mean I am not a fighter.

I accept that I don’t have control all the time.

I accept that I need help from others.

I accept that it is ok to feel angry.

I accept I don’t know it all.

I accept with an open heart and with all my flaws I am human.

Love and light,

Maria T Mejia

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Este mes de abril será el 25 aniversario conviviendo con el VIH. Los últimos 2 años de vivir con el VIH han sido los más difíciles para mí y muchos no saben esto. No me gusta para mostrar o decirle a la gente cuando me siento enferma, y es muy frustrante para mí saber que estoy haciendo todo que debo y más y todavía se siente como que estoy como un bebé - y cualquier virus anda en el aire lo cojo y estoy enferma de nuevo. Parece que no he podido tener un descanso. He escrito antes acerca de sentirse atrapado...nunca completamente enfermo de hospitalización y nunca 100 por ciento saludable para sentirse bien. Aquellos de ustedes que me conocen saben que soy muy trabajadora. Trabajador duro y cuando tengo energía me siento tan feliz de que me termino quemándome de hacer tantas cosas! Sé que tengo que tomarlo las cosas con calma. Pero, parece que me siento más débil mas días. Entonces esos días que estoy bien, quiero vivir al máximo y vivir intensamente! Estoy muy agradecida a mi madre que ora por mí y me motiva diario de lejos. No me gusta decirle que no me siento bien, ya que se preocupa. :( Pero, en esos momentos de desesperación finalmente le digo, “¿¿Dónde está el Dios al que le rezas??” Y caigo en un agujero oscuro...no me gusta. :( Soy muy espiritual pero muchas veces me siento enojad y tengo estas conversaciones con Dios y le digo, “Por favor, yo sé que yo mismo me lo busqué, pero porfavorrrrrr ¿Dónde estás? ¿Cuando vas a sanarme o simplemente llevarme? ¿¿¿Por qué tenemos que sufrir???” Sé que hay gente un millón de veces peor que yo. Soy bendecida...pero dolor es menor que otro de! Todos tenemos nuestro propio dolor y cruz que llevamos. Mi problema no es el VIH. O tomar mis medicinas etc., etc. Mi problema estar haciendo todo lo humanamente posible para ser saludable y aún sentirme débil y enferma con algún tipo de infección etc., etc. Tantos antibióticos todo el tiempo, etc., etc. Estar cansada y fatigada hasta para hacer las cosas del diario normales. Las personas que tienen su salud simplemente no saben lo afortunados que son! Por favor, escuchen a mí si son diagnosticadas! No espere como lo hice yo para comenzar el tratamiento. Cuanto antes, mejor! Y si usted no tiene el VIH, por favor cuídese y protéjase! Este maldito virus del VIH/sida es horrible! La mayoría de los sobrevivientes a largo plazo del VIH como yo pasamos por esto...no es fácil.

Decidí ser humana y pedí ayuda ayer de un administradora de mi grupo internacional. Su nombre es Martha Lang. Ella me hizo caer en cuenta de que todo lo que le predico a otros, yo no soy haciendo por mí misma. Necesito apoyo y empezar a escuchar a mi organismo de nuevo. Yo soy pro terapias naturales y alternativas, pero hay alunas que me falta como mas proteína porque realmente no como cosas con proteína mucho y también algunas otras cosas que estoy muy feliz de probar. No es normal para mí ser indetectable durante casi 14 años (que es cuando empecé mis medicinas) y que mis CD4s y porcentaje estén tan bajos. Nunca he tenido mas de 450 CD4s y ahora ando en los 300s…Y…Yo no fumo, realmente no bebo, como súper sano, tomo agua, hago ejercicio, tomo mis ARVs a diario etc., etc. Hay un eslabón perdido como mi amiga Martha me dijo. Y así es! Y tengo que hablar con mi organismo y hacerle preguntarle lo que necesita y lo haré. También siento mal a veces cuando me quejo de no sentirse bien, porque muchas personas que me siguen para apoyo y encuentran su esperanza a través de me, y siento que van a estar asustados ntos que estoy vulnerable por ver la realidad y los asuste. Pero, tengo que pensar en mi. No puedo ser buena para ayudar si estoy yo misma en turbulencia y soy humana!

También estoy agradecida con mi esposa Lisa que está ahí para mí 24/7. Pero al mismo tiempo siento que ella se merece vivir una vida normal con alguien que sea saludable. Me siento culpable, pero, ella me dice recuerda que vales mucho y que eligió pasar por esto conmigo. <3 Que especial es! Para los que me juzgan porque nos amamos ella y yo, piensa antes de hablar! Esto no es por sexo. Esto es puro y amor incondicional! No importa de que género somos.

He decidido que voy a seguir pidiendo ayuda y mostrar la realidad de lo que yo vivo con el VIH! Los momentos buenos y malos! No puedo esconderlo mas ni me voy hacer eso a mi misma. Voy a luchar hasta el final.

Acepto yo soy vulnerable.

Acepto lo que la vida tenga para mi.

Acepto que puedo ser débil a veces y esto no significa que soy un perdedora.

Acepto que no tengo el control todo el tiempo.

Acepto que necesito ayuda de otros.

Acepto que esta bien sentirme enojada y esto esta bien.

Acepto con un corazón abierto y con todos mis defectos que soy humana.

Amor y la luz

Maria T Mejia

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jae001's picture

Maria, you really start need to start listening to your own advice. You're such a wonderful person and you're so caring to everybody else you need to start taking time making appointments for time for yourself. I am in the healthcare field and I find myself running myself down even though I have very high T-cell count even after 22+ years I understand what it means to get yourself worn out.
And don't be down on yourself because your T-cell count my doctor told me like this, your T cells are like the police officers on the corners and they're hunting for the virus and if your viruses undetectable you don't need a lot a police officers around. So it's okay to only have a couple even 450 but if there's no virus to fight you're doing good.
If you want to take a vacation you can always come to Palm Springs and will never tell anybody where you're at you and Lisa can come out and stay at our house. And just relax!

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Sologirl's picture

I am glad you have decided to not fight yourself as much, after all... You are human. I also wonder when my borrowed time will be gone. I am healthy for the most part. Sooo I have a few pointers. For protien I use a whey powder called "Jay Robb Whey protien" you can get it in 3 flavors at the health store or on amazon. It's the best tasting stuff I found, I mix it in a frozen fruit smoothie with yogurt, or have it with soy milk. I also take a supplement called "juice plus" it's a pill. Lotsa clinical proof. Email me if you are interested. Also a real probiotic. These 3 things help me a lot. I know how the bad days I want to sleep and the good days I am just like you, I want to get it all in and do everything while I have the energy! Be well my sister....Sologirl

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