I need a geneticist!!

I know Doctor Google can be very harmful for us and it is best to stay away from researching too much but I came across this article and it fit me so well that I can't help but wonder if I have type IV Ehlers Danlos Syndrome personally instead. My factor VIII was found to be low and borderline Von WIllebrand Disease was diagnosed. I have been having problems with pneumothorax as well. I am very nervous that my fundraiser wont take off and that I wouldn't be able to afford my child daycare and travel expenses to get myself properly checked out. I know I need to place my faith in the universe and believe that God has a plan no matter if I am comfortable with it or not. I could really use prayers today.

Check out the article that ruffled my feathers today here.

A special shout out and thank you to my supporters! You mean so much! You give me HOPE!

My Medical Journey Update

The goal was to get me into see a care team but we learned that Cincinnati Children's Hospital is booked until January. I am being sent to a round of different specialist doctors in the meantime. I will be taking the trip to Carmel, Indiana tomorrow and look forward to updating my supporters as I receive information. I also have an appointment with Methodist Hospital in Indianapolis, Indiana Scheduled for the afternoon of May 12th to address my clotting disorder. I have been to three different hematologists in regard to my opposing bleeding disorder. I will be seeing a vascular surgeon for this evaluation. 

I can't thank my supporters enough for being here for me during this journey! I am blessed and they give me hope!

Pregnancy and birth memories with Ehlers Danlos Classical

I apologize that it has been so long since I posted. I enjoyed birthday memories yesterday with my family. I turned 32. I thought it would be good to share my memories of pregnancy. I was pregnant for the first time about age 19. I had an early miscarriage. I was pregnant again about the age of 20. The same thing happened again only this time they saw a good sac but no fetus inside. I had a DNC. When I woke up I was very upset and full of anxiety. I was screaming! My hospital bed was soaked (you would think they would have kept me from seeing that) with blood to the point it was indented in the mattress. The nurse said he disagreed with the doctor's decision not to give me a blood transfusion. I ate. I lost it on the way home. I slept for 3 days straight. No eating, toileting, or anything but sleep. I was pregnant a third time about age 22 and it happened again. I chose not to have a dnc this time. They did some chromosome testing and decided I should be able to have children. I was 24 when I found out I was pregnant a 5th time. I was given progesterone suppositories for the next 12 weeks following this discovery. As I progressed I was very scared but the baby made it passed the first trimester. I almost never felt movement though. I found out I had preclampsia during the third trimester. I was induced 9 days before due. I had him vaginally with epidural. He flew out in about 7 hours. That is how it goes with a stretchy pelvic in my case. I had anemia and an unusual amount of bleeding.

He is 8 now. I wanted two really bad and tried for years to get pregnant again hopeful I could carry another. Finally, 7 years later I did! This pregnancy started out great! I was tested positive for MTHFR A1289C/and C677T combination mutated. Because of this test I was put on blood thinners. I noticed that when I forgot the shot my baby didn't move much like my last pregnancy but when I did it was like my uterus was the world's largest playground! I was unable to walk by the time I was in third trimester. My chiropractor was a godsend. I had a hip going out everyday and my pelvic was VERY unstable! Instead of preclampsia I only had high blood pressure though. I had placenta previa too whatever that means. He was scheduled to be induced but decided to come on his own about 3 days early. They tried to send me home (I lived about an hour from Hospital) but I refused. My contractions weren't regular. They never got regular with my first either. It has always been a guessing game for the doctors. I had been 3 cm dilated for months and that hadn't changed so they saw no reason to keep me.Then my water popped! Nobody checked how far I was until they came in with the epidural. I was already a 7! They gave the epi but it truly only covered the last push and the tearing. Yes, tearing. I tore both times and my biggest was 7lbs 1 oz! The doctors did not expect any tearing.  I was at the hospital about 5 hours until I had him. I was unusually fatigued after both almost to the point of unable to care for the infant straight away. I was so tired I would fall asleep with the baby in my hospital bed with me. That was dangerous! I had a significantly less amount of bleeding with him. I had worse postpartum phase with the first than the second. So the first was more emotional and bleeding and the second was a more painful pregnancy in regards to my body structure feeling as if it was falling apart. I had my tubes done a month later. My second is 17 months old now.

Of note: I went a year later to see if I still needed blood thinners. I learned I have a low factor 8 or possibly Von Willibrand's Disease which are bleeding disorders. I still think I needed thinners...

Please subscribe and share!