About Me

Hello! Thank you for viewing my blogs. I am a mother of two born in the early 80s. My boys were born 5/19/2006 and 5/5/2013. I was diagnosed with Ehlers-Danlos Syndrome Classical in August 2013 after going to a rheumatologist suspected of having an autoimmune problem both by symptoms and blood work. I left the office with an Ehlers-Danlos Syndrome diagnosis. I frequent many Facebook groups including Ehlers-Danlos support sites. I have other diagnostics which will I will list in the archives of my site. I live in the forest area of Indiana. I grew up all over the state of Indiana. My other family shows no signs of hypermobility except for my father who sat in a yoga position with both feet up in his lap. He complained of hand and wrist pains when it came to writing. I am the first and only in my family with this diagnosis. You do not have to be hypermobile to have Ehlers Danlos Syndrome. You do have to be in pain.

During this journey of life with a chronic illness, I hope to pick up friends to exchange support and encouragement.

I remember the appointment very well. The office staff gave me this long word that I had to have them write on a piece of paper for me. I went home and began to research "Ehlers-Danlos Syndrome." I never expected what I found to fit me so incredibly well. I have joined many support groups. Within the support groups, I have learned that there are many more common issues that we have though they are not on the lists available to describe us. One example is that I have yet to find somebody with Ehlers-Danlos Syndrome that does not see halos around lights in the night. As time goes on, I am learning exactly how debilitating this condition is. Although the pain remains the same, the stiffness and lack of ability increases.

If you need to contact me and are not a spammer, you may also write an email to my lowercase yahoo address. See combination below:

The email is my first name. amanda

The first letter of my last name. hudson

The number 14


Monday, October 20, 2014

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...

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