Join the Conversation on
46 people
0 stories
3 posts
Explore Our Newsletters
What's New in

My defining moment came when I could go no further. I'd struggled for years with #EhlersDanlosSyndrome symptoms but neither I, nor any of my doctors knew why. I have both #primary lymphedema and #Lipidema - diagnosed after years of searching for answers. all my doctors diagnosed me as fat, but that wasn't the answer to what was taking me down so fast. My defining moment came when I could no longer use my constantly subluxating arms, hold my head erect for long or walk a reasonable distance. I did the research that led me to the Ehlers-Danlos Society pages where I religiously studied the videos until I came to some understanding of my condition. I own that knowledge now, have a diagnosis and got one shoulder successfuly repaired

See full photo

Even though my day so far has been really stressful I still managed to take a breather and draw this #primary pain disorder #Cronic pain #Fatigue


Handling the Holidays with Rare Diseases

Big sigh. The Holidays are upon us again. This should be a happy time, I should be looking forward to all the get-togethers to come, so why am I so anxious? It's because I have a genetic immunodeficiency disorder. Being around loved ones can literally make me sick. I also have Vestibular Neuritis, Vestibular Migraines and food allergies, just to name a few.

This is both my favorite and most miserable time of year. My favorite because it's time to give thanks for our blessing and the birth of our Savior. My most miserable because it coincides with cold and flu season, and surviving dinners made with love, but not with consideration for my severe food allergies.

It's hard to get family members and friends to understand that the "little bug" they have can lead to a serious infection or even a hospital stay for me. It's hard to get them to understand that too much movement in a room, flashing lights and overstimulation can lead to a flair of vertigo or a migraine. It's hard to get them to understand that the "just a little bit" of dairy in their dish can leave me spending the rest of the day vomiting and miserable. Its harder still to deal with the misconceptions about my conditions, advice on how to cure an incurable disorder, the questions about when I'm going to use my degree and go to work, and my least favorite "you can't really be that sick".

So how do I handle all these things and still enjoy the Holidays? I don't have the answer to that. My husband and I have come up with a code word so that when I've had all I can handle of insensitive behavior, we leave immediately. I'll take all the precautions I can. I'll get my infusions the week before the Holiday, I'll wash my hands, a lot. I'll wear my mask when I can. I'll make a point to avoid the flashing lights and the most crowded rooms. I'll bite my tongue and nod my head at the comments that shouldn't be made. I'll bring food that I know I can safely eat. Most importantly I'll pray and put my trust in Jesus.
#primary immunodeficiency disorder #vestibulardisorders #rarediseaseawareness