I've got Friends in Low Places

During my search and find for Ehlers Danlos Support I have come across a very good friend! Her name is Ashley. She has a website too with a ton of information!

Medicallyme.com

I am very thankful for the support groups available to me.

On a side note we came up with the money for me to go see my chiropractor at the end of the week wooohoo! I have been having a lot of trouble with my ribs, back, and chest lately.

More than the Beighton Scale/Score

Other signs of connective tissue disorder and hypermobility include the following:

Metenier's sign

Reverse-Namaskar

There are many more signs. EDSers will do this stuff as kids as "party tricks" and yes we realize nobody else seems to 

be able to do it but we dont necessarily see ourselves as different. Gym class shows many people doing things that 

others can not for instance. We were born this way and have to be told that it is different within the population norms.

Genetics Ehlers Danlos Syndrome and Me

All of the laboratory testing for 23andMe is done in a CLIA-certified, CAP-accredited laboratory in the United States.

I had my DNA ran by 23andme.com using saliva testing. I took the results and ran them through livewello. These are my results based on genes presumed to be linked to Ehlers Danlos Syndrome (note: SNPs are all collectively found on my chip for each gene. There are more but they aren't showing on my chip at this time.)

1

2

3

My diagnosis is classical familial hypermobility type of Ehlers Danlos Syndrome by my rheumatologist. I have not seen a geneticist. I do not have insurance to go see one or seek treatment at this time. Thanks for reading! Please subscribe and share!

Cervical Instability

Hello everyone! I hope you are enjoying the blog. All I could think about lately was the pain that goes on everyday but Im not going to get on here everyday and whine about that causing my blogs not to want to be read anymore. Instead I slap on a smile (call me fake idc) and continue onward.

Today I want to talk briefly about cervical instability. Many with EDS complain about neck and back pain daily. It can get really bad too. I would love to put my head down about every hour for a good 15 minutes all day long. Of course I cant do that but when I get the chance it does help me get through the day. You will find me trying to hold my head up with my wrists very often. Yes it does make things worse for the wrists!! Today I am thankful of my pain scale not being a 10. Woohoo! Tomorrow is Halloween and I plan to take my kids out so I imagine I will be worthless November 1st hahaha! (I laugh but it's not funny. Not really) But that's ok I will pretend I am fine and try to get myself to believe it. Its hard to understand how that does seem to help, although very little, it does. A positive attitude will get me as far as I can go in life. I choose to stay positive for myself and my family! So slap that smile on and fake a good day if you have to. If I believe there will be more Ehlers Danlos Syndrome awareness in our future than it will come true? The power of attraction wins!!

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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Medical insurance

October 7, 2014

I used to be on my state Medicaid program. I was on food stamps and didn't make any money. My youngest son is still in diapers. I had to find a way to make money to afford clothing, extra milk and formula, bottles, and diapers beyond what I was able to get from charity. I started a job. My food stamps, dropped significantly. I lost my Medicaid.. I've never had an MRI of my brain. With Ehlers-Danlos syndrome. I'm supposed to have an upright MRI of my back and brain. I have no way of doing that.There used to be a program for people who work. That program is not receiving enough funding to allow me to apply.I am not writing blogs to try to get money. I still work. The point I am trying to make is that some people with Ehlers-Danlos syndrome struggle with getting medical care. My doctors office visit is paid out-of-pocket.

I hope that something changes soon in my case.

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Nortriptylin October 6, 2014

I'm sorry I haven't posted in a while. I started my new drug and the sedation has worn off. I'm not sure what to think of this new one just yet. I'm just glad that I'm awake sometimes. I'm talking with Dragon NaturallySpeaking now. So far so good on the program. Deleting things can be kind of tricky. Often I have to delete an entire paragraph because it is difficult to tell it which word to remove and have it do so. I'm very happy about how much I can get down on a page without my wrist or hand hurting. I feel tired today, but that's because I did more activity than I normally do. Today I was crushing cans using a grabber to avoid bending over. It still wore me out. I feel like taking a nap. This is only my third day on this new drug.

Day 2 New Drug NOT!!

Dr. took me off of the amnitriptyline because he was afraid I would be sedated enough to have a car accident considering I work and chose not to take it at 11 PM last night after being asleep for nearly 3 shifts. I have a new med to pick up tomorrow after work. I am off this weekend so I sure hope it doesn't interfere with school work.

Day One on New Drug Amitriptyline

10/1/2014

Daily Journal,

I slept well last night although I got up in pain as I managed to pretzel myself up in my sleep again. I went back to asleep upon a new position. I woke groggy but pain was low. I took my 8 year old to school and came home to gather paperwork I needed to take to town. I took my 16 month old with me. I was doing ok getting him in and out of the carseat until the last stop to get WIC because he ran out of milk. I couldn't get him out of the cart! My mid back has a pain that I cant get rid of. I thought I would need to ask for help. Instead I pushed through the pain. Getting him and the groceries in seemed impossible. I hurt so bad.

I also woke up today with a split in the crease of my second to pinky toe. I have had this happen certain times of year since I was a kid. It feels worse than a paper cut. This one is pretty deep.

I feel very tired too. I took a nap this afternoon. The drug doesn't seem to affect my ability (or lack there of really) to control the racing thoughts that come with my anxiety. It's too bad I cant seem to get any treatment for that.

Will add more later if anything new comes up...

Its about 5 PM and I cant bend! My mid back is in full blown pain. Not cool.

Went to sleep and got up at 11 PM. Too late to take day 2! I have to work tomorrow.

Amitriptyline and more about me.

9/30/2014

Amitriptyline

I have bad brain fog and so I am afraid that I will have more memory trouble as a possible side effect. I took my first pill at approx. 9 PM EST. They are 10 MG each and the prescription said to take one or two at bedtime. I will only be taking one. Will add more details tomorrow.

I was diagnosed with Ehlers Danlos Classical in August of 2014. I top the Brighton score.

I go to college and recently applied for a disability due to my wrist. hand, back, neck, and every joint in my body pain. I was approved and will begin using Dragon Naturally Speaking soon. It is a voice to text software. I will be updating my blog as a daily journal which will include my thoughts on the program. 

In my blog I will also be talking about past experiences that may or may not relate to Ehlers Danlos Syndrome but are worthy of taking note.

Thanks for reading!