Another member of the Chronic Illness Bloggers’ Network – Kali at This Spoonie Speaks, created a Blog Challenge for EDS Awareness Month after looking for one to participate in and not being able to find one! I have decided to catch up in order to participate – so I will list the questions below, in case you would also like to join the challenge – and then answer the first 6 to the best of my ability!

 

  1. Introduce yourself and explain what type of EDS you have.
  2. What other illnesses do you have that are related to your EDS?
  3. How long did it take you to get your diagnosis? How many doctors did you see?
  4. What do you want newly diagnosed EDS-ers to know?
  5. How have you adapted to your diagnosis?
  6. How has EDS changed your life for the better?
  7. What are your top 5 coping tips?
  8. What are your top 5 goals that you want to accomplish despite your chronic illness(es)?
  9. How do you stay motivated in daily life?
  10. What do you want people to know the most about your life with EDS?
  11. When did you first start thinking that the dislocations/subluxation, extreme flexibility ect. could be related to a real problem?
  12. Did your related diagnoses come before or after your EDS diagnosis?
  13. What’s your biggest pet peeve about trying to explain EDS?
  14. Has being sick impacted your relationships?
  15. What were your initial thoughts about being diagnosed?
  16. What healthy habits have you adopted since getting diagnosed?
  17. How do you feel about your current treatment plan?
  18. What do you think is the most misunderstood aspect of EDS?
  19. What are your top things to pass time when you’re stuck in bed?
  20. What is your favorite motivational quote and why?
  21. What is your favorite piece of medical equipment that you own?
  22. What things have you learned from being chronically ill?
  23. What was your worst medical setback? How did you overcome it?
  24. What was your worst encounter with a doctor?
  25. What is the worst unwanted advice you’ve ever gotten?
  26. Have you found books that have helped you cope with being chronically ill?
  27. What would your coping advice be to friends or family of someone who’s chronically ill?
  28. What is the strangest question you’ve ever been asked about EDS?
  29. Do you think changes to your diet helped or contributed to your symptoms or the severity of them?
  30. What has been your biggest outlet to help deal with being sick?
  31. What are your favorite memories from EDS Awareness Month?
  1. Introduce yourself and explain what type of EDS you have. My first post for EDS awareness Month was an overview of the different types of EDS. There are 13 currently recognized types of EDS, as well as the recently coined Hypermobility Spectrum Disoders. I was diagnosed with Hypermobile EDS (hEDS) in March of 2016 at 28 years old. I have shown signs of hEDS since birth, but started experiencing serious symptoms in my late teens. hEDS is the most commonly diagnosed form of EDS, and also the only type for which there is not a clear genetic marker that has been identified. One of the reasons for the new (and generally more strict) guidelines for diagnosing hEDS is to encourage research to find the genetic marker(s) for hEDS. hEDS is now defined by the presence of generalized joint hypermobility (a beighton score greater than or equal to 6 for pre-pubertal children, 5 for pubertal adolescents and adults up to age 50, and 4 for adults over age 50), and either A) Systemic manifestations of a connective tissue disorder such as mild skin involvement – at least 5 must be present (soft velvety skin, mild hyperextensibility, unexplained stretchmarks, bilateral piezogenic papules of the heel, recurrent or multiple abdominal hernias, atrophic scarring, pelvic floor/rectal/uterine prolapse, dental crowding/narrow palate, arachnodactyly, arm span-to-height ratio > 1.05, Mitral Valve Prolapse, aortic root dilation > 2, B) Positive Family History (a parent, child, or sibling who independently meets the diagnostic criteria), or C) Musculoskeletal complications (chronic musculoskeletal pain in 2+ limbs, chronic widespread pain, recurrent joint dislocations or joint instability confirmed at two or more sites in the absence of trauma). My beighton score is 7, and I have five systemic manifestations of connective tissue disorder, and musculoskeletal complications. I also have family members who would likely meet the criteria, although none have been formally diagnosed.
  2. What other illnesses do you have that are related to your EDS? EDS almost always come with coexisting or comorbid conditions. For me those include Asthma, Arthritis of the Cervical Spine, Cervicogenic Headache, Cervical Spondylosis, Cervical Radiculopathy, Chronic/Intractable Migraine w/ Persistent Aura w/o Infarction, Complex Sleep Apnea Syndrome (both central and obstructive apnea), Dysautonomia, Fibromyalgia, Functional GI Disoders (IBS, GERD, Functional Dyspepsia)Mast Cell Activation Syndrome (MCAS), Mild hearing loss, Myopia (Near-sightedness), Non-Celiac Gluten Intolerance, Occipital Neuralgia, Sacroilieac (SI) Joint Dysfunction, Temporomandibular Joint Dysfunction (TMJ), Trochanteric Bursitis, and deficiencies of Vitamin D, Magnesium, and Vitamin B12.
  3. How long did it take you to get your diagnosis? How many doctors did you see? Since EDS is a genetic condition that I was born with, I think that it’s appropriate to say that it took 28 years to reach a diagnosis. Especially considering that I have displayed symptoms since birth. Very early on, I had extreme difficulties with digestion and required a predigested formula. I cannot possibly count how many doctors I saw looking for answers about my EDS and the comorbidities before I reached an answer. I am grateful that when doctor after doctor said that my blood work looked fine, and that I seemed healthy, I did not listen, or let them tell me that fibromyalgia and mental health issues were the only problems that needed to be addressed. I will always be grateful to the doctors and especially the physical therapists at the Michigan Headache and Neurological Institute who were some of the first to suggest that my hypermobility might be connected to my pain.
  4. What do you want newly diagnosed EDS-ers to know? It’s okay to feel overwhelmed, and it’s also okay to feel validated. Feel what you need to feel, and then move on with the knowledge that nothing has really changed except for now you have the language and the tools that you need to get proper care for your condition. Try not to feel like you have to figure it all out RIGHT NOW (the comorbities, the best treatments). You have the rest of your life to work out how to go about living with EDS. Also, if you can, find a local support group. They will be the best resource for finding doctors who are either EDS literate, or willing to learn. It’s also just really nice to meet some people in person  who have walked a similar path.
  5. How have you adapted to your diagnosis? I have adapted to my diagnosis on a lot of different levels. At first, in the most practical sense, I adapted by incorporating physical therapies, and accepted that these exercises will be a necessary part of my life in the long term, as opposed to the sort of short-term physical therapy that typical people do after an injury. I’ve also been able to accept that I have a disability that will be with me for the rest of my life, and learned to accept that while I have limitations I can learn to accommodate for them just like I advocated for the needs of my students. I have also happily adopted the zebra as a mascot in my life and as a part of my identity.
  6. How has EDS changed your life for the better? First, the connections that I’ve made both online and in person with other zebras and family members of zebras has been a gift that I was surprised by initially. My diagnosis also encouraged me to begin writing about and advocating for EDS awareness through my blog. I’m also a firm believer that the presence of pain in my life has made me more grateful for the times when I am able to fully enjoy myself – I wrote about this phenomenon here. I believe that those of us who experience chronic pain also feel greater joy in the good times.