#ThisIsMyEDS Part 2

Blog post

[Image shows three spoons on a laptop keyboard. Overlaid is a clip art of torn white notebook paper with a red paper clip that reads “#This Is My EDS Part 2” with a zebra head. In the bottom left corner is the banner for Thee Crohnie Grace]

Part two of the #ThisIsMyEDS Tag is all about Diagnosis with Ehlers Danlos Syndrome since diagnosis often doesn’t occur until later in life and is under diagnosed since it can cause an array of different problems per person.

1) How Long Did Your Diagnosis Take? When and how were you ultimately diagnosed?  It took 18 years before I was diagnosed. Due to having Crohn’s since I was little, many doctors blamed my problems on Crohn’s and it’s related issues. At one point my GI had put on me Celebrex because he believed I had Juvenile Rheumatoid Arthritis because it is common with Crohn’s. When the joint pain and joint related issues began to get worse they finally sent me to a Rheumatologist who told me I had Ehlers Danlos Syndrome and no arthritis, and after a genetic study it was determined I had the COL5A2 mutation that is linked with Classical Ehlers Danlos.

2) What was your emotional reaction when you were diagnosed? And Now? Honestly it was a huge relief to know it wasn’t all in my head, that I had validation, and relief to just have an answer. Of course then there was a bout of sadness over the lack of treatments and the fear of getting worse. Now I’ve just kind of accepted things and am at peace with my health overall.

3) When did you first start experiencing symptoms? When did you acknowledge them as symptoms? When I was 9 I started getting bad joint pain, around the same time I started Remicade for my Crohn’s disease, I assumed it was just a side effect of medicine and wasn’t until other problems surfaced that I began to suspect something was off.

4) Was there a specific age where your head drastically changed? If so, when was that? My junior year and that summer were when things really started causing problems. I had lost a lot of weight from a bad Crohn’s flare and the weakness and fatigue made the pain even worse, things were subluxating and dislocating more frequently and I started using a cane because I found standing and walking to be incredibly painful and I felt off balance quite frequently because I put all my weight on whichever side hurt the less.

5) What medicines, treatments, and/or devices do you typically need? Do you have access to all your needs? I have access to all my needs really. Medicine wise I rely on pain medication and lots of medication for comorbidities such as gastroparesis and POTS. I have an NJ feeding tube that keeps me nourished and keeps my medicine in my system. Mobility device wise I use a walker on a every day basis and a wheelchair as needed for longer events or things that require a more extensive amount of walking. I also use braces and KT tape on a regular basis due to joints dislocating or subluxating.

[Image shown at the top left shows my thighs and knees sitting in a car, my left leg has a brace and my right leg is taped with pink and purple KT tape. Image shown at the top right shows me sitting in a wheelchair in a cafeteria with my brother standing behind me holding his phone down for me to see while our friend stands to the left looking at his phone. Image at the bottom shows me in my dining room from the thighs up, my hands resting on the handles of my walker, I’m in white shorts and a pink shirt with some planets and text that says “Far Out”]

6) How often do you go to the hospital? How comfortable are you in medical environments?  I go to the hospital for follow ups with specialists and procedures as necessary, I tend to avoid the ER unless it’s for something that can be handled locally (like my kidney stones) because all my main doctors are 4 hours away at Cincinnati so we can usually schedule a direct admit to avoid the hassle of dealing with an ER since they are not usually equipped to deal with chronic issues. Honestly in a hospital I am pretty comfortable now (I used to not be) but I still get very uncomfortable in ERs due to many ERs not knowing how to handle chronic illnesses and such.

7) What kind of resources and support do you use?  My family and friends are really my main support. There’s not many sources around here so I rely on doctors and in depth research when it comes to questions and resources.

 

And that concludes part 2! We are nearing the end of May and there is still one segment left so stay tuned and remember that when the month ends, awareness shouldn’t stop there. Spreading awareness can help by gaining the attention of others, raising money for research which could lead to treatments or resources for EDSers everywhere.

 

#ThisIsMyEDS Part 1

Blog post

[Photo shows three spoons laying on a laptop keyboard, overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads, “#ThisIsMyEDS Part 1: What EDS Is Like On My Body”. Below the text is a picture of the profile of a zebra head. In the bottom left corner is the blog banner that reads “Thee Crohnie Grace”]

“For EDS Awareness Month I’d like to try and uplift the DIVERSITY of EDS and how it impacts our lives as individuals. EDS manifests itself on a wide spectrum and our symptoms can be fluid as well.” -Annie Segarra

 

You probably know Annie from her Youtube videos where she talks about disability and diversity. Annie also has Ehlers Danlos Syndrome and is an activist when it comes to spreading awareness. Thus came her idea of EDS tag. It includes three separate parts to be released over the month of May (EDS Awareness Month). This is the first part which is mainly a bit of an introduction and just covering some of the basic stuff, so let’s get started. And if you have EDS, feel free to join along and tag in with the hashtag: #ThisIsMyEDS

1. Name, Pronouns and EDS Type: So my name is Grace, my pronouns are she/her or they/them (Gender is a social construct) and I have Classical EDS which was formerly known as Type 2.

2. How Are You Feeling Today? Overall I feel pretty decent, of course I’m also writing this after taking pain medicine and Benadryl haha.

3. Can You Explain EDS in a Sentence? Ehlers Danlos Syndrome is a genetic connective tissue disorder in which the body doesn’t produce enough collagen or produces defective collagen.

4. Whats Your Favorite Analogy for How EDS Feels? OR What EDS is Like? For me it feels like my  joints are like wet spaghetti or like I’m being held together by very old rubber bands that stretch way more than they should and snap very easily.

5. What Are Your Symptoms and Comorbid Illnesses/Conditions? I have chronic pain in my joins, sometimes muscle pain from bruises, hyper mobile joints that frequently subluxate or dislocate, stretchy skin, trouble walking, poor memory and trouble regulating body temperature.  Comorbid illnesses such as POTS, Gastroparesis, Cluster Headaches and Crohn’s Disease.

6. How Does EDS Impact Your Daily Life? Well I have to use a walker or wheelchair now to get around, I’m in physical therapy twice a week, I’m tube fed, I have an ileostomy, I have to take medicine in the morning, afternoon, and night. I’m unable to work, but I am still in college. I very seldom leave my house except to go to college or doctors’ appointments anymore. I am often in too much pain to do much of anything except stuff I can do from bed or from a couch, I’m always exhausted no matter how much sleep I get and have trouble getting to sleep because of pain or here recently because of cluster headaches. It can sometimes do a number on me emotionally because there’s so much I want to do any I’m unable to do it. Such as the fact I didn’t go to my latest LARP event because I was feeling so horrible.

 

This concludes the first part of #ThisIsMyEDS. Part two will be done on the 15th, and part 3 will be done at the end of the month. To learn more about EDS check out The Ehlers Danlos Society.

EDSTag

[Image shows me with strawberry blonde hair without my glasses, my makeup is on and my feeding tube is dangling over my arm. I’m wearing a white halter tank top and wearing a Mjolnir necklace. Along the bottom in black text reads #ZebraStrong and has the face of a forward facing zebra.]