Amanda's Medical and Family Fund

I have always been an optimistic and positive person. No matter what I must show a smile. Nobody likes the turned down eyes of sympathy. Some people are willing to pretend they are ok when they are not. I am one of those people. I am asking for your help today and this is why:

I went to the doctor with the following complaints:

·         Anxiety

·         Hair loss

·         Night Sweats/Soaks!

·         Sensitivity to hot and cold weather

·         Times of-Inability to get warm regardless of temperature and layers of clothing/blankets(uncontrollable chattering of teeth)

·         Painful heavy menstrual

·         Brain Fog

·         Memory Loss

·         Reoccurrence of Strep A and Candida

·         Reoccurrence of Bronchitis

·         Migraines/Headaches

·         Debilitating Physical and Mental Fatigue

·         Insomnia/Oversleeping

·         Achy muscles and joints/resembling arthritis

·         Severe pain in specific areas constant!

·         Ringing in the ears

·         Hoarse voice on occasion for no reason

·         Occasional fainting

·         On and off torso pains

·         Lactose sensitivity

·         Dental Issues

·         Vision Issues

·         Irritability

·         Itchy hands and feet

·         Lumps under the skin

·         Lumps on the skin that resemble strep

·         Frequent Urination

·         Dizzy upon standing sometimes

·         Dry Skin

·         GI Issues

·         Daily Muscle Problems/spasms/pulled/ache

My doctor sent me to see a hematologist because of my last pregnancy resulting in lovenox and heparin shots based on a positive test for MTHFR gene mutation combination. The hematologist found me to have low factor VIII and elevated APTT. This indicated bleeding problems instead.

Then he sent me to a rheumatologist who diagnosed me with Ehlers-Danlos Syndrome. This is a collagen disorder found in the same family as Marfan syndrome.
The ER has found small pneumothorax in my lower left lung.
The eye doctor has put me on drops for Glaucoma. The problems just keep coming.


Now I would like to tell you about my children and their birth.

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 4th 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 movementthough. 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 turning 2 now.I didn’t know about EDS, bleeding disorders, chronic illness or glaucoma before I had my children. I knew about broken ankles, kidney stones, gallbladder removal full of too many stones to count, teeth extractions, and pain for unknown reasons some of which I thought everyone had to deal with in life. Now that they are here I wish to give them the best life possible as any mother would. We have a home on 5 acres of property which we rent but could own for $55,000. I pray that I could leave it for them.
The children's father works full time seven days a week to support our bills and food. I am unable to pay extra on the land with the need to put all money towards medical trips far away to get treatment by specialists for Ehlers Danlos Syndrome, diapers, and babysitting fees to work part time plus a day for school. I have been unable to hold down a full time job in my condition for any length of time. My hope was to go to college and make enough money to do such things. Instead I have brought myself thousands of dollars worth of educational loans. I still attend college. I am now a Junior. I worry I may not be able to set aside enough money to support my own legacy. Every day I pray for my family. Today I ask for your support. Every $1 gives me hope that my children will have a good life despite this battle I have with chronic illness. I am truely overwhelmed financially.

I was taught that each person has to earn their living and enjoy fruits from thier own labor. I do believe this is true! I will continue to fight my own battles and put a dollar into each of these wishlist items personally.

Asking for help is very hard for me. It is what I feel I have to do for them. My children will always come before my pride.