Facing Forward: Sara

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Sara

Location: Cincinnati, OH

Diagnosis: My primary diagnosis is Hypermobile Ehlers-Danlos Syndrome. Co-morbid conditions include: Anxiety, Asthma, Cervicogenic Headache, CFS/ME, Chronic/Intractable Migraine w/ Persistent Aura, Depression, Fibromyalgia, Food Allergies and Intolerances, Functional Dyspepsia, GERD, Irritable Bowel Syndrome, Migrainous Vertigo, Occipital Neuralgia, and TMJ. It's also suspected that I have Mast Cell Activation Syndrome (MCAS) and Post Orthostatic Tachycardia Syndrome (POTS) - a type of dysautonomia, but these have not yet been confirmed. Most of these conditions are experessions of my EDS. 

Age at Diagnosis: My first chronic health condition (Basilar Migraine) was diagnosed wt 18. This is also the age at which I began displaying symptoms of EDS, which was not diagnosed until a decade later at 28.

How are you currently treating your condition?

I take more than 20 medications and supplements daily (sometimes multiple times a day). I also have about 15 medications that I take on an as needed basis. When my migraines are at their worst I used injections, infusions, and nerve blocks to help alleviate symptoms.

I also attended occupational and physical therapy to work on strengthening the muscles that support my spine and other joints, and improving my balance/proprioception (I fall A LOT!)

I have tried many different elimination diets to improve my symptoms. Currently, I follow a diet called The Abascal Way. It requires elimination of most major food allergens (gluten, dairy, shellfish, etc.) and all sugar. It also dictates that all protein and carbs must be eaten in proportion to fruits and vegetables (more fruits and veggies!) I also avoid foods I know to be migraine triggers. As a result, in many ways it ends up being similar to an Autoimmune Paleo Protocol. It is NOT a cure, but it helps me manage my symptoms.

Additionally, I see a pain psychologist and practice meditation regularly.

 

What are the biggest challenges you have faced since your diagnosis?

Honestly, my biggest challenge since becoming chronically ill has been getting the EDS diagnosis. Hypermobile EDS is under-recognized, and doctors do not often connect all of the conditions it can cause and look at the whole picture. Since my EDS diagnosis earlier this year my biggest challenge has been identifying co-morbid conditions I wasn't already aware of (like POTS and MCAS), and getting appropriate recommendations for treatment.

What are your favorite tips and tricks for managing everyday tasks?

Be kind to yourself. Believe that no matter what, you are enough. Put self-care tasks on your to-do list. Prioritize them. Allow yourself to rest and recognize that doing so is not only necessary but productive when you have a chronic illness.

How do you manage to keep facing forward every day?

I practice mindfulness and gratitude throughout my day. I celebrate all that I am able to do. Sometimes, I allow myself to do things I shouldn't. I choose to believe that "life does not have to be perfect to be wonderful." (A fellow chronic illness warrior, Annette Funicello, once said this). It is because of this that I'm able to plan for the future, even though it is uncertain.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

You are a fighter; you made it this far. You will figure it out, and when you do the important people will still be there. Breathe and "Just Keep Swimming!"

Do you have a blog you would like to share?

My blog is Zebra Writes.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.