Life with Ehlers Danlos Syndrome: surgery

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

@yahoo.com

Monday, May 15, 2017

The Patient Struggle

Medical patients of a chronic illness go through a larger battle than what meets the eye. It is more than time spent to see someone, money given, or even the action of explaining what all issues there are. Sometimes it is devastating to learn that the needed care will only go unattended.

Some people complain daily of debilitating symptoms such as pain, illness, or outright abnormality of the body which is left untreated or minimalized. Recently, I have had such a struggle. It began years ago when I had surgery for a kidney stone that was too big to pass through the urethra. I woke up with a stent reaching into my kidney to help aid passage of remnant stones safely out of my body. The doctor who removed it said, "Oh my! I am so sorry. This stent was defective. There was a hole in it during production, and you will experience an increase in UTIs for the rest of your life." I thought that was alarming. I will now tell you what is worse.

The Patient Struggle

I have had three surgeries for kidney stones in total. Those were just the ones that were too big ever to pass on their own. I would imagine that my kidneys have scar tissue and possibly other lifelong effects of the trauma. A few months ago I had all the symptoms of another UTI. I am waiting for my healthcare to start and go back to the doctor and get more medicine. I was given conditional approval April 11th for May 1st, but they can't find my name on their computer to pay my first premium, and I'm told to wait up to two weeks for that internal investigation. I did say more medicine. The doctor already gave me 3 (three) pills after an appointment that I paid out of pocket for (in addition to the collected bills from that office already). Those three pills took away the pain, but I am left with the fatigue and smell when going to the bathroom. I do hope it is no more than two weeks. Holding onto a UTI for this long cannot be healthy.

I send a shout out to all of the patients struggling to gain healthcare and treatment which are two very different things. I salute your perseverance throughout the fight and hope you know that you are not alone.

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Saturday, October 8, 2016

Surgery VATS with pleurodesis

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I have not been posting because I have been pushing my limits while having Ehlers Danlos Syndrome. I got steroid shots injected into my lower lumbar region and, unlike most people, it actually worked for me. I then pursued a full time job. For the past year I have been working to build surgical parts. It has been fullfilling work to know that I have been able to assist doctors in improving the quality of life for people around the world. I am now unemployed. Reoccurances of primary spontaneous pneumothorax took that from me and family. I saw my 3 year old dislocate and relocate his thumb yesterday. That was the first time I have ever seen anyone besides myself go through it in person. In this post, I'd like to add a call to action. This page is old and never really received much love to begin with. Please click contact us on the page linked above to visit the website and see if anyone's gofumdme is still working to help them. That is my goal this weekend in addition to school work and healing from VATS with pleurodesis.

Life with Ehlers Danlos Syndrome

About Me

Monday, May 15, 2017

The Patient Struggle

The Patient Struggle

Medical patients of a chronic illness go through a larger battle than what meets the eye. It is more than time spent to see someone, money given, or even the action of explaining what all issues there are. Sometimes it is devastating to learn that the needed care will only go unattended.

I send a shout out to all of the patients struggling to gain healthcare and treatment which are two very different things. I salute your perseverance throughout the fight and hope you know that you are not alone.

Please like and subscribe!

Saturday, October 8, 2016

Surgery VATS with pleurodesis

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