A.S. Face 1044: Miriam Hernandez

Face 1044Miriam HI wanted to share my story with fellow AS’rs 😀 I am a 29 yr old mother of 2 amazing boys 7 and 1 been married for 8 yrs and I now reside in Northern Illinois. I started having problems as a child I remember always having sprained ankles or wrists but my mother always thought I was just a clumsy child. I was very active as a child and teenager when I was 15 I had a “bike injury” is what the doctors called it. I was riding my bike and decided to take a break when it was time to get on again my knee popped out of place it immediately ballooned up and I was in so much pain went to the ER and they said my knee gave out. About a month later I had so much pain in my right wrist, it hurt too much I went to my Dr and he said I had CT and was sent home the pain kept getting worse and worse I went to have a second opinion and it turns out my wrist was broken ..how? I have no clue. My Dr sent me in for a bone scan, MRI, X-rays and he said I had nothing maybe some Osteo-Arthritis . I remember always being asked if I slept wrong because I didn’t notice that I would turn  my whole body to look at something or someone my neck felt sore but I didn’t pay much attention to it. Yrs passed and I got married in 2005 I lived here in Illinois but noticed I could not get out of bed I ached all the time so I was taking a lot of Naproxen and I couldn’t take it anymore my husband and I decided to move to Texas where my family was I felt better but still had the “Did you sleep wrong? Got a stiff neck ?” questions. I ended up pregnant that same yr in August I felt great no more pains delivered in May 2006 and about a month after little by little I kept getting pain in my neck my knees everything hurt. My Dr kept saying it was my body readjusting to not being pregnant he sent me in for test he thought at a point in time I had gout when that came back negative and I kept nagging him he finally referred me to a Rheumatologist in 2007. I went to my apt within 10 minutes of me seeing and talking to the Rheumy he said I know what you have. I was like how do you know if you haven’t tested me for anything? He said ” you have a condition called Ankylosing Spondylitis” I was like Anky whitis? lol He sent me in for blood work, X-rays and an MRI that same week he called to confirm his diagnosis. I was put on pills but that didn’t help at all so within a month I was on Humira and pain meds. I was able to take control of my life once again, keep a full time job, keep up with my home, my child, my husband, my family, my life. I was able to loose weight, go to the gym enjoy life! I ended up leaving my job and family, home everything I knew to follow my husband up to Illinois in 2011,  within being here a month or so things went down hill , I kept getting flare ups, couldn’t walk,  I had no job, I started to get depressed so I found a new Rheumatologist and I was put back on Humira but that wasn’t helping me as it did before, I was put on Enbrel and Methotrexate, usually my other Dr would do Urine tests before I was put on any medications but this one didn’t do that nor did he do blood work. My monthly cycles have always been off so he gave me the go to get on methotrexate, I took about 2 weeks of the pills and stopped I felt sick all the time but continued the Enbrel, I went in for a check up and to my surprise I found out I was pregnant in May of 2011 so I stopped my meds and in June I started bleeding went to the ER they said I miscarried and I felt horrible you can only imagine..I went back to the Rheumatologist and he said I needed to get back on the MTX he sent me in for a sonogram to make sure I had miscarried and went in for HCG testing everything indicated that I was not pregnant and had miscarried. So I started treatment once again , I only took a month this time in July I kept getting sick so I stopped.  I noticed in August I kept getting sick in the mornings but I blamed my meds for that , I slept more than usual but hey who doesn’t with this lovely disease? Halloween came along and I kept getting flutters thought nah! I have gas 😀 well I went in for a check up because I kept feeling sick and it turned out I was pregnant this whole time 5 months and I didn’t know it! I had exposed my baby to MTX and other AS drugs I felt so bad. The Dr’s wanted me to have an abortion because my baby was supposed to be born with all these medical problems but I said NO, I delivered a baby boy in Feb 2012 he was underweight and was born with Multi cystic Kidney he has very little function in one of his kidneys and the other one is just fine. My AS never went into remission I was in so much pain it got worse, after I delivered my neck got even more stiff it fused and I can no longer turn or look directly up. I continue to battle with this  because I know that It wont get me down , I have so much to live for. I have met great people dealing with this and I am happy to know that I am not alone my father was diagnosed a year after I was so we keep in contact and compare our symptoms 🙂 we joke about inheritance some people inherit money, houses, cars and I inherit pain and aches ..

Illinois, United States of America


6 Responses to “A.S. Face 1044: Miriam Hernandez”

  1. Dear Miriam,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. That’s for sharing your story. It makes my heart warm when you didn’t abort your child. God is good! Hope things get better!

  3. Hi Miriam, My name is Julia Valencia Cook # 552. Thank you for sharing your story. Are you latina? I’m from Colombia but have lived in Canada my hole life. Your story is inspiring. I too was very happy that you didn’t abort. Do you know if you carry the HLA – B27 gene? I sometimes wonder if some latino’s (while not carrying the gene) may still have a genetic predisposition. My dad had AS and died of a heart attact at the yound age of 54. Thanks for sharing your story and stay hopeful. You have AS but by the looks of it AS does not have you!

    • Thank you all for taking the time to read my story .. I am Latina I have tried to see who else has this in my family my father has it and like I said my AS is more advanced than his .. I am positive for the gene .. Oh my sweet child of mine he’s my miracle baby love him to pieces .. I now understand when they say God creates perfection I see it everyday in him 💚@ Daryl I was tired of meds I went off for several reasons one didn’t have money to keep getting my meds and second I wasn’t getting any better seemed like my condition got worse and that’s when he decided to put me on methotrexate and still didn’t help my neck fused and sometimes I could hardly get out of bed .. I went on enbrel and I am Doing much better 🙂

  4. Hi Miriam, thanks for sharing your story. Do you mind my asking why you decided to go off Humira in the first place? I am on it too and am tempted to try going off it to see how I would feel “drug-free.” Is that what happened in your case? Thanks!

    Daryl

  5. 🙂 …… I know this Illinois weather is hard on you!! Stay strong……you have a beautiful family!

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