A Cute Little Parasite

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It’s been a crazy 4 months!!!!! If you had told me a year ago that I would be in school again and pregnant I would have not believed you. The main reason I’ve been MIA is the morning sickness had me down and out. Between being tired, nauseous, and throwing up all the time I literally had no energy. Im doing much better now. RaJon and I are super excited but a little nervous. Going back to school full time for my MPH (Master of Public Health) is a lot harder than I thought. Also by me being on Remicade I can’t get the baby vaccinated with live viruses for 6 months. I am going to continue with my Remicade treatments until my 3rd Trimester. Once that hits I have to stop. Dr. Hamvazi wants to put me on another medication but he admitted that he has never had a pregnant patient on an active treatment. He referred me to a rheumatologist he knows because she has had pregnant patients on similar treatment. I told my ob and my doula that I wanted a vagina birth with no drugs. My ob said that if my HS stays stable I can have that but if my flares become too bad I would need a C-Section. With me coming off of Remicade in December I am worried about flaring to the point where I can’t deliver vaginally Im due in March 9th and I am currently 17 weeks and 5 days. I can’t want until we find out whether we are having a boy or a girl. Wish me luck.

 

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R.I.P. Prodigy

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Prodigy of Mobb Deep died on June 20th. It took me by surprise but I remember hearing that he had Sickle Cell. When I heard that he died I automatically assumed it was some type of complication from it. Though the cause of death is not known it is believed to be related to his illness. He died doing what he loved, performing. It took me back because it was a crushing reminder that chronic illness can be fatal and sometimes doing the things you love can put you at risk. He was in Las Vegas, where the temperature reaches the 100’s performing when he became ill. He probably knew the risk and performed anyway because rapping was his life. Though I don’t have Sickle Cell I can understand choosing to be safe or to do something you enjoy. It sucks that sometimes we have to make that choice. For healthy people it may be an easy choice. Do what’s safe. With Well’s Syndrome I am not suppose to be outside because 1 mosquito bite can cause havoc in my body. I don’t want to be in doors everyday. I put on Off and go outside to play with my nieces, walk the trail at Hines Park, or walk the dog. Sometimes I don’t put on Off and I just go outside. I am tired of living in a bubble and I want to start doing the outdoor activities I love. Rest in Peace Prodigy. You died doing what you loved. Your music will be remembered.

HS Scholarship

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So AbbVie emailed me and asked me to post this scholarship opportunity. If you are going to college (Undergrad or Grad School) and you have HS you should really look into this scholarship.

BBVIE IMMUNOLOGY SCHOLARSHIP OVERVIEW

·        The scholarship is available to students living with inflammatory diseases*, including psoriasis or HS, who are seeking an undergraduate or graduate degree from an accredited US university/college or trade school, and who plan to enroll for the 2017-2018 school year.

·        Forty-five AbbVie Immunology Scholars will be selected to receive $15,000 each for use during the 2017-2018 academic year.

·        Applicants will be judged based on academic excellence, community involvement, written response to an essay question, and ability to serve as a positive role model for the community.

Key dates and deadlines are as follows:

Applications will be made available in December 2016 on www.AbbVieImmunologyScholarship.com.

Applications must be submitted by Friday, March 31, 2017.

Winners will be notified by Friday, April 28, 2017.

More information on the AbbVie Immunology Scholarship, the application process, and eligibility criteria can be found at www.AbbVieImmunologyScholarship.com.

New Beginnings

I feel like a weight has been lifted off of me today. I have been struggling awhile and its finally done. Today was the last day at my job. It was time for me to go. I will miss my students and co workers but I have a new opportunity in the new year. With the new year approaching my hair needs to come out tomorrow. I don’t feel like taking it out because washing and styling my hair can be a challenge. My arms get tired and by my left arm being webbed I can not wash with ease. I will use this Christmas break to do my hair in sections. I remember when I use to have other people doing my hair and it wasn’t want I wanted but I had no choice at the time. My arms were out of commission. I remember to times and I remind myself to be thankful that I can do my own hair. Yes I am not as fast and efficient as I use to be but I can do it myself. I like the hair but its too much. Im not use to having all of this hair. Im glad I didn’t put all of the packs in. Im ready to take it out and try something new in the new year. With a new job I want to do something different with my hair, but I don’t know what.

Remicade Rechallenge

Later on today I will receive my Remicade infusion! I haven’t had an infusion since July 24th. My HS has been flaring for the pass 3 months but I was to tolerate it surprisingly. Dr. Hamzavi had me take 60mg of Prednisone yesterday to see if it can prevent the Wells from occurring. I guess we will see. The first dose of Prednisone was okay but the second one has my legs in so much pain. I don’t remember being in pain with Prednisone in the pass. I just took my third dose an hour ago along with some Motrin. I will give an update on how this infusion goes.

Happy Birthday to Me

Today is the first birthday in 4 years where I was not bandaged. I just thank God for that. My family and friends came over and we played Black Card Revoked. My aunt made me a homemade Carmel cake, my husband bought pizza and cupcakes. I’m glad I was able to take my mind off of HS for a while. It’s been almost 13 weeks since my Remicade Infusion and I’m doing ok considering. I’m waiting for my insurance to approve my treatment. Hopefully they approve it soon because my left thigh is pretty angry.

Wells Syndrome

So I may have a condition called Wells Syndrome. I keep getting these itchy, painful, burning bumps all over my body. I had to start wrapping my arms and putting Telfas on my back so that my clothes wouldn’t rub against them. Dr. Hamvazi thinks I developed it because of Remicade. My biopsy came back positive and now it’s been sent to another lab to confirm. I’ve been on Remicade for almost 2 years now and it would suck if I have to stop. I’m on Prednisone right now and I have to push back my Remicade for a month. Mind you I was suppose to have Remicade on Sunday. Now I will have to go 10 weeks without an infusion. I am not a happy camper right now.