#1 What are our diagnosis?
We both have the same main diagnosis of:
- POTS (Postural Orthostatic Tachycardia Syndrome)
- EDS (Ehlers Danlos Syndrome)
- MCAD (Mast Cell Activation Disorder/Syndrome)
We do have offshoots of these autoimmune/autonomic issues that differ slightly!
#2 When were we diagnosed?
Strangely enough we were each diagnosed at the age of 17 (first with with Lupus and then everything else followed).
Kate: Em was diagnosed first and then each of our diagnosis seemed to bounce back and forth. I was next with POTS and then so on…
#3 What specialist do we see, if any?
Basically all of our doctors are specialists at this point. We each see a Rheumatologist, Cardiologist, Neurologist and we’ll see other specialist when things pop up (like a gastroenterologist or hematologist).
#4 What should I do if I suspect I have an autoimmune or autonomic issues like POTS?
Start logging your symptoms and numbers in a journal. Whether if it’s a certain time of the day that you’re “crashing”, or what your heart rate/blood pressure are sitting at throughout different times of the day – write it down. This information will be very handy when you’re relaying your symptoms to your doctor.
You also want to find a doctor who doesn’t dismiss you if you feel like something is wrong with your body. If you suspect you have POTS you want to ask for a Tilt Table Test. If it’s autoimmune related a lot can be detected through blood work and ask for a referral to a specialist in your suspected field.
#5 What’s the furthest we’ve traveled to see doctors?
We each have traveled across county to go to specific hospitals (both were done by referrals).
Em: I went to Johns Hopkins in Baltimore, MD for an autoimmune offshoot problem I was having with my muscles.
Kate: And I went to The Mayo Clinic in Rochester, MN for a full autonomic workup for POTS and gastrointestinal issues.
#6 Are we twins?
This one cracks us up because we get it all of the time (and we don’t see) – no we’re not twins, but we are sisters!
Em: I’m older by 2 1/2 years
# 7 Where are we based?
We moved up to Seattle, WA a couple of years ago but we both grew up in San Diego, CA and went to school in Northern California. It wasn’t planned for us to both end up in the same state, but we’re SO glad it worked out this way. We absolutely love the Pacific North West and actually prefer the weather up here for our symptoms.
#8 What medications are you on?
We are both on several medications. We’re on some of the same, but most different because we respond differently to medications and what work’s for one, does not necessarily work for the other. We don’t have a list of our medications anywhere because while some are pretty consistent (like our immunosuppressant), others are constantly changing.
#9 What do we struggle with mostly on a daily basis?
Like a lot of patients in the chronic illness community, our symptoms can fluctuate big time. It really depends if there are any other factors at play to how we’re feeling as well (diet, sleep, activity level etc.) Some days we’re are doing well with pretty good energy levels and appetite, other days we can’t get out of bed.
#10 I’m thinking of buying something you recommended, what’s your honest review?
Anything we put out publicly is 100% how we really feel. We’re never going to hype up a product if we don’t use it/believe in it. Something may work for one of us and not the other, but we’re never going to give false info to try and sell something to you. We only share things that excite us and make our daily life better. We know from personal experience that working with a chronic illness is NOT easy and even with limited funds at times, we are tempted to spend money on something in the hopes of feeling better. We’re conscious of that and we don’t take any recommendations we give lightly because of it.