♥ Spoonies?

What does being a spoonie mean?

Spoonies are people who live their lives with chronic illness. Basically spoons represent emotional and physical energy. We start each day with spoons and every action takes some of the spoons. The bigger the job the more spoons. “Running out of spoons” is a way to tell others you’ve used all your energy.

What takes the most spoons?

 ♥ I would have to say washing my hair is exhausting I have really long get real tired and really sore arms.

How did you find out about Spoonies?

  I first heard about it when I started my blog! I was confused of what it meant at first so i researched and asked others. I now have a very good understanding of it all!

How Does it feel that others are in the same situation?

  Honestly, It’s saddening. I know first hand what some of the pain feels like. Everyone is different so personally I am really effected by my energy loss and pain. It’s the type of feeling no one should have to go through. The exhaustion is constant for me. I wake up feeling i could sleep for years. I can’t do anything someone my age could do, such as sports and being up on my feet for long periods of time.

-Stay beautiful!

Cassie

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My Story About Finding An Answer

Hello everyone!

Today’s posts are going to be a bit different…

I want to talk about how life was leading up to my diagnosis..

I was a normal 12 year old going to school making lots of friends and getting straight A’s. First time i noticed when something was really wrong was something that happened in school. I was in science class painting a bottle rocket made from a soda bottle.. I felt weird so i ask to go into the hallway for some fresh air. Next thing i know is i can’t speak and i’m falling with a fuzzy head. All i remember is my science teacher picking me up and running me to the nurse, when i got there they called home and my mom came to pick me up. That same day i went to the doctors and that’s where it all started.. “Shes fine it was probably the heat”. At first i was like okay.. they’re right!

I went to school the next week and i kept getting dizzy and light headed, adding to that i had bad stomach aches. I went to the school nurse and told her how i was feeling.. she sent me back to class. When I got home that day i told my mom what happened, and we were going to keep an eye on it to make sure i’m not getting the flu or anything. The next day i went to the nurse again with the same problem and she refused to call my mom. I went to the bathroom and texted my mom to come pick me up, when she got there I was dizzy had a stomach ache and my face was flushed as red can be. Something wasn’t right..

That’s when the doctors started running test after tests on me to figure out what was happening. They did TONS of blood work and other tests like checking my brain and heart making sure i was okay in that aspect. At the end of my cardiologist appointment they told me i have a prolapsed mitral valve, that scared me but they told me it was okay and that they were going to followup with me every few years.

As time went on more symptoms, more tests, more fear..The doctors said i didn’t have anything. That is when they started telling me rude things.. “it’s all in you’re head” “You’re a hypochondriac” “You just want attention”. As I listened i knew what i was feeling but i was starting to believe what they were saying. I then over time developed severe depression and anxiety, the doctors didn’t believe me only my family did, my mom noticed me isolating myself and talked to me. My family was really supportive and then got me some help…The depression was worse than i thought, I fell deep into a black hole and just kept digging. I had many thoughts.. “Why won’t the doctors believe me?” then i had thoughts like “Why am I still here?” I felt like I was taking up all the doctors time with me being sick so constantly. After some time my depression lessened but was still there.

I finally got sent to a GI doctor His name was Dr. Kuhn, as soon as he came in the room he gave me a feeling that he was going to take good care of me and help us figure this out. He ran tests and we were still stumped but, he didn’t give up on me. As time went on i got my depression a little more under control but i gained ever more symptoms. My bones and joints were constantly popping out by such simple movements like turning my head. I had been to orthopedic doctors and they just told me i needed more exercise.. I was doing physical therapy three times a week for 2 hours. I as time went on i got worse.. and i lost all hope..

I recently in 2015 got referred to another orthopedic doctor because they told me i had scoliosis, at this point it didn’t surprise me. When we got there the checked me over..we noticed stretch marks all over my body like a pregnant women. At that time i was only weighing in at 90lbs and i was 5’2, that stumped us. He then mentioned his wife was a genetics doctor, he referred us to her we waited well over a year for an appointment. When we arrived they bought me in and looked at my charts..ran blood tests to make sure i didn’t have the more severe types. She then went in the hall to talk to the others..when she came in she told me i had Ehlers-Danlos Syndrome Hyper-mobility. My mom and i looked at each other with tears in our eyes..happy tears, because after 7 years i finally got answers and a diagnosis.

Thank you all for reading my post!! I will have many more to come relating with this.. Stay tuned and thank you for all of the support! If you ever need to talk about you’re battle feel free to message me!

P.S. I want to thank all the people who have supported me through out my troubles and all.. I love you guys! ❤

-Stay Beautiful

-Cassie

 

Injured?

Boy oh boy it’s been a long past couple weeks. Spent one Thursday evening in the emergency room after i fell down a couple steps. As i was walking down my knee dislocated and my ankle gave out and my full body weight went onto my bent ankle. My mom and sister took me to the hospital and after hours of x rays and waiting we were told it was a bad sprain and possible damage to my tendons, ligaments, and muscles. As the days went on i had bad swelling and bruising. I was so bummed that i was going to miss prom but i wasn’t giving that chance up for nothing! If i had to go to prom in a wheel chair i would’ve!

A couple days after the accident It still was pretty painful so they gave me a boot to wear.

Stay beautiful!

-Cassie

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Doctors Appointment…

Had an appointment with my GI doctor yesterday Dr. Kuhn… I’ve been going to him for the past 7+ years trying to find an answer to my pain. He never gave up and told me he never said couldn’t help anymore, he kept searching for answers to help me. Hes the main doctor who got me to where i am today being diagnosed with Ehlers – Danlos Syndrome.

I was going to him for abdominal pain, We did test after test and we couldn’t figure it out..it was a long road to a diagnosis. He never gave up on me so i never gave up on him! He was such a sweet, caring, passionate doctor who cares about every single patient, you can tell he loves his job.

Dr. Kuhn if you’re reading this, thank you again for everything you’ve done for me. Thank you for sticking with us and not giving up! You by far is the greatest doctor I’ve ever been to and i’m sure others could agree! Thanks for taking care of me and i wish you a happy rest of your career! #1 Doctor!!! Bless you’re heart!

-Stay beautiful!

-Cassie

Sharing!

Hello everyone!

Well, I finally found a doctor who knew what EDS was! We went to a local clinic with one of the younger kids and i had put a packet together about EDS to share. As I was trying to share the information she acknowledged knowing what EDS was. Oddly enough, they thought she may have had it at one point. She was sent to Johns Hopkins in Maryland for evaluation.  Luckily, she did not have it, but she was adamant that this was an outstanding hospital for evaluation.  She was pleased with how friendly and caring they were.  Way to go Johns Hopkins!!!!!

Look forward to new post soon!

Stay Beautiful!

-Cassie

Ehlers-Danlos Syndrome

EDS is a group of inherited disorders that affects your connective tissues and is caused by abnormalities in
the structure, production, and processing of Collagen.
Collagen is the main protein in skin and other connective tissues, such as tendons, ligmants, skin, cartilage, bones and blood vessels.

There are six major forms of EDS:

  • hypermobility :
  • Classic : Often mistaken for Hypermobility and has more significant skin and soft tissue manifestations. Connective tissue disorder characterized by skin hyperextensibility (Excessive stretching of the skin), abnormal wound healing, and joint hypermobility (joints that move beyond the natural range). It includes two previously designated subtypes (EDS type I and EDS type II).

 

  • Vascular : Usually manifests thin, translucent skin, fragility of soft tissue and scarring. Predisposition to spontaneous rupture of hollow organs (primarily arteries, intestines, and uterus.)

 

  • Kphosoliosis : deformity in the spine caused by an abnormal curvature of the vertebral column. It is a combination of kyphosis and scoliosis. Kyphosis is an excessive curvature of the spine in the (A-P) plane.

 

  • Arthrochalasia : autosomal dominant, rare, and dstinguished by congenital hip dislocation and more severe skin manifestations Skin hyperextensibility with easy bruising. Tissue fragility including atrophic scars ,Muscle Hypotonia (Hypotonia means decreased muscle tone.) ,Kyphoscoliosis ,Radiologically Mild Osteopenia (bone density that is lower than normal peak density but not low enough to be classified as osteoporosis.).

 

  • Dermatosporoxis : soft, doughy skin that is extremely fragile; saggy, redundant skin, especially on the face; hernias; and mild to severe joint hypermobility.

 
I have the hypermobility type. This form is usually considered one of the least severe types, however; serious musculoskeletal, skin, and soft tissue complications occur more with this type. It mainly affects my joints and bones and makes it hard for me to do day to day things. It’s hard for me to stand for long periods of time, and do stuff like climbing steps and even washing my hair.

-Stay Beautiful!

-Cassie

How Will I Be As Time Goes On?

Today i felt more exhausted than i have been in about a week. I was dragging trying to find things to keep me awake and busy. I decided to write the doctors that have helped me and cared for me in this journey. I wanted to make it special so i decided to do it myself. Went to the store to buy some blank cards and some decor for them. As I got home i realized i grabbed envelopes instead.. ugh.

My pain and soreness is still bad from the other day, i could really feel it in my shoulder and back today. Wasn’t able to do as much as i wanted to which disappoints me. I ended up falling asleep around 3:00pm and slept till around 5:40pm. I woke up tired with a bad headache, which thankfully is starting to go away.

I wish I had energy during the day time as i have a lot of things that need to get done. I feel like i’m not doing enough in my everyday life, i’m either really fatigued or sick. Looking back now at all the things i was able to do and loved like dance it saddens me that i can’t do that anymore. As of now i get tired and achy from washing my hair. How is life going to be as time goes on? Will i have trouble doing more things? These questions i wonder everyday..

Stay Beautiful!

-Cassie