A.S. Face 0025 : Jennifer Fiamengo-Negrón

Have AS, Rheum Arthritis, Convulsive Seizures from exhaustion and severe pain, heart arythmias, high blood pressure, blood clots and too much cerebral fluid (that periodically has to be drained if it the medications don’t control it). I’m on remicade infusions, methotrexate injections and about 20 other pills a day. I really can’t complain though. I have been so blessed in my life, I am a mommy to 5 AMAZING kiddos and am married to the kindest most understanding man EVER! I have my ups and downs but am still able to swim and stay mobile and active. I hope this finds you and others with AS well. Stay warm this winter and stay positive, AS may get the best of our bodies some days but let’s make sure it doesn’t ever get our spirits!!!!!

In His Love,

Jennifer Fiamengo-Negrón
Proud Army Wife
Proud Mommy to 5
Proud Owner of Tony

Mile High Rockie Mountain State Of Colorado United States of America

1/1/82 – 9/28/15


7 Responses to “A.S. Face 0025 : Jennifer Fiamengo-Negrón”

  1. Dear Jennifer,
    You sound a lot like me. I can’t complain either, I would rather focus on what I have been blessed with than what I no longer have.
    Blessings to you always 5x 5 =25!

    Sincerely Cookie

  2. Focusing on the blessings is so difficult–Thanks for being an inspiration.. And, thank your husband for his service You are both heroes in different ways.

    Elizabeth said this on October 23, 2011 at 7:21 am

  3. Elizabeth, I definitely have had my share of down days. I flat-lined in the hospital on 2/14/11 from complications of AS and literally died for two minutes in front of my younger sister, I was then bed ridden for a week and it then took me six months to really come back to “life” and be myself. On 7/5/11 after only having my port-a-cath or medport (whatever they want to call it) installed I was infected with a staph infection during a remicade infusion from the infusion nurse (we have proof) that left me in the hospital again and for six weeks had me knocking at deaths door. I then went through two more surgeries, three rounds of IV antibiotics, a picc line that left me with two DVT’s now and I now have a NEW SHINY PORT WOOHT WOOHT!!!! So excited since it’s worked once with no infection and my sister and I are just on cloud nine!!! LOL! Through all of this, I have laughed, smiled, cried, lost 60lbs, puked my guts out, thanked God a million times over for the love and support of my baby sister/nephew and my husband and kids (who have kept me in good spirits and going). We keep joking that I’ve been kicked out of heaven twice now because God just isn’t ready to handle and angel like me yet and I guess we’ll just hang on to that. Keep the faith and hang on to the positive, I know it can be so very hard and you will most definitely be in my prayers. Thank you for your kind words and I will pass them on to my husband. Many gentle hugs, lots of love and even more support and prayers from the Rockies!!!! ~Jen

    Jen said this on October 25, 2011 at 2:07 pm

  4. I am also currently awaiting an appointment with a neurosurgeon, suspected too much csf causing headaches etc. i have AS. Have they ever said that the 2 things are related to you? x

    • Hi Kerry!!!! I’m so very sorry I didn’t respond to you, for some reason I didn’t see this until now (pardon the pun – ha ha ha ha – although funny to me). They have never said that the two are related but I have a sneaky suspicion that they are both related. I have since found out that I will never be a candidate for stinting or splicing because my neuro opthamologist said that I am throwing small clots from my brain and that is what’s keeping my fluid too high. I’ll also never be able to have my dosage of diamox (3,000mg a day) lowered because I run a significant risk of is coming back (apparently 4x’s worse than before, which will be enough to cause me to go brain dead). So I keep going with what I have and enjoy living the life I have ;). I’m so blessed to have the opportunities that I do. Things are definitely in a good place and I am so very blessed to have the family and friends that I do. Feel free to ask me anything at anytime and email me directly if anyone has any questions!!! gentle hugs and love to you all!!! jennifer.negron@gmail.com

  5. Dear Jennifer , I was reading through some of the many A.S. stories and came across yours . You make me want to fight harder and you are a inspiration . Your story is truly touching ! Thank you for sharing it with me & all the other A.S. WARRIORS ! I’m going to start praying not only for my loved one’s but for everyone with A.S. ! May God Bless You & Your Family Keep You Strong & Safe Always .. Amen Amen !

    • Dear Kristy, Please forgive me for not replying sooner. I am so flattered that you would think of me as an inspiration. I tend to think of myself as just putting one foot in front of the other and laughing my way through life. Boy do I have my moments though where I break down and sob and feel completely sorry for myself and disappear into a dark room, then I remember my children and my husband and right about the time I want to roll over and pull the covers over my head one of my children peak the door open and ask me “Momma?? Do you need anything?” That’s when the covers come off and I get up and go back to being mama. I am truly so very very blessed though. Please keep in touch with me via email or facebook. my email is jennifer.negron@gmail.com and I am now in Sunny Charleston, SC ;). Praying for you and all the AS warriors out there.

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