It’s Dysautonomia Awareness Month!
Enter CeCe Collins, one of the strongest and most intelligent people I know. CeCe lives with multiple chronic illnesses including Ehlers-Danlos Syndrome, Sjogrens, and Dysautonomia. She does a lot of her own research to manage her illnesses.
(This is a LONG, but VERY GOOD read that I’m breaking up into parts)
Q: What are the most beneficial aspects of your treatment? What works best for you, including lifestyle changes you’ve implemented yourself?
Right now, I am really limited on a daily basis, unable to live life like I should be as a 23 year old woman. I had to quit my job, I really limit my activity, and mostly stay home unless it is to go out to doctors appointments. This obviously is very frustrating, but the progression of my conditions has basically gone unchecked because no one was treating me aggressively until I went back to Mayo. When you have chronic illnesses like mine that are sort of still “new” and don’t have hundreds of clinical trials showing what treatment works, it is hard. To get the best care, you have to go somewhere that is constantly researching and experimenting. That is why I chose the neurologist I did, because he is specifically specializing in autonomic dysfunction caused by Sjogren’s Syndrome and has treated dozens of patients with immunotherapy with good, positive results.
I am not under any treatment that is helping the progression of my conditions so I can’t say that anything has yet to be very beneficial or that I have found the answer. I am still waiting on that because of bureaucracy and health insurance and money hungry pharm companies.
Editor’s note: Since this interview, CeCe has been approved for IVIG therapy (which costs around $10,000 per treatment in the U.S., but mere thousands anywhere else in the world – correct me if I’m wrong, CeCe.)
After we travelled to see Goodman, it became clear that my health was precarious and my condition was potentially life threatening without the proper treatment, which includes how I treat myself. So, my parents and I decided that it would be best to quit and have my “job” be to focus on my health and do all the things necessary to get my IVIG treatment ASAP.
I also implement different management techniques into my daily routine that are specific to my conditions. With POTS, I aim for 2-3 L of electrolyte, high sodium fluid per day. This can be hard with my GI issues as I am not absorbing the hydration into my tissues. This means I sometimes have to go get IV fluids at the hospital or doctor’s office often. I often wear compression to keep blood flow from pooling in my legs. I use ice packs to cool off after overheating, because my body has a hard time regulating its own temp. I rest when I need to rest (for the most part) and try not to overdo things, because I will regret it. I stay out of the sun as much as possible and always wear a hat and sunscreen, to prevent reactions.
I take like 16 medications a day, including some vitamins because I am deficient in so many due to the GI malabsorption. Some not always, but lately everything has been on an everyday basis due to symptoms. These meds help a lot. I’ve tested some by coming off them and seeing if they made me feel worse, or better, but it was determined they were definitely helping me keep my symptoms a little bit more manageable. I do keep track of my blood pressure and vitals so that I can determine what is causing me to feel certain symptoms. This can sometimes cause me some anxiety if my vitals are totally wacko, but I have to just get over the worrying and get on with my day. I try as hard as possible to keep a pretty steady routine, because that does help me function a little better, but sometimes that just isn’t possible. If my body is extremely tired, I try to sleep as long as possible and listen to my body. I recently have been developing symptoms of hypersomnia though which is no fun and literally makes getting up freaking impossible. I slept for 24 hours recently and yes I felt refreshed, but also like I was hungover and just not my best self. So I am working on figuring out some things that might help me get better sleep.
I have had to adjust my diet. I have fructose malabsorption and glucose intolerance so I basically can’t eat any fruit. I occasionally will eat like a banana but most other fruits leave me in agony for a few hours later. It just isn’t worth it. This also means i have to cut out a lot of things with added sugar or certain types of sweeteners. Stevia, Agave, and too much honey all cause horrific stomach pain. Any of the sugar substitutes like dextrose, maltodextrin, etc are a big no. This can be hard because sometimes I just don’t look or something hasn’t bothered me before so I keep eating it and then one day it will suddenly cause very bad stomach pain and bloating and i know I can’t eat that thing anymore.
I tried to follow the low FODMAP diet recently with a nutritionist but I have a lot of problems digesting other foods as well due to the GI dysmotility and my general malabsorption syndrome. Basically my stomach is just really lazy and doesn’t do a very good job at actually providing me with nutrients. So, I felt like the low FODMAP was just limiting my diet even more and if I couldn’t eat really simple things that always seem to go ok on my stomach on the days where I could barely keep down food, it was going to make things worse. So I quit that. I mostly just listen to my body and eat what doesn’t leave me in extreme pain. This has been a process and is still trial and error and has been a really difficult aspect of living with chronic illness. I drink a lot of Orgain vegan protein shakes but just recently they now seem to also irritate my stomach. Boo. Generally my safe foods are: PB w/ little J or Honey and banana, flour tortillas, rice, eggs, rice cake, cereals, popcorn, crackers, greek yogurt, watermelon (only truly safe fruit), small amount of black beans, sometimes I can do a sweet potato, some meats in small quantities like simple rotisserie chicken and applegate organic turkey sausage, ground organic turkey sausage…as you see I literally get zero veggies. It sucks. I straight up can’t digest them. Continually working on a plan for my GI stuff and nutrition with my GI doc.
Q: What is the coolest thing you learned about the medical field in your journey? What’s the worst thing you’ve realized as a patient that you would like to see changed?
The coolest thing about the medical field…hmmm! That is a hard one…Well I can’t think of anything vague that applies to “The medical field” as a whole, but I can think of the coolest thing that was done for me to get diagnosed with one of my conditions. To diagnose the Lupus Anticoagulant Antibody they use a snake viper venom from a “Russel Viper” or something. When I saw it on my test results I first thought “What the heck?! Did my doctor think maybe I had an old snake bite?!” but then I figured out that they were using the viper venom, which should make the blood do something with clotting time, and if it is longer than a certain amount of time, they run it again. Mine was longer both times and then they did some other clotting tests and protein tests to determine that I did have the LAC. I just thought that was really cool and never thought that hematology would use a tool like snake venom to test someone’s blood.
I think that when a doctor can’t find what is wrong with a patient, they tend to react and give up because it might make them feel like they aren’t doing a good job because they can’t help you. It is probably uncomfortable for them and they would rather not see your face in their office over and over again when they have hit a point in their medical knowledge where they just can’t figure out how to help you.
This is extremely frustrating and goes back to the med school complex and how doctors are trained to think horses not zebras, in my opinion. I wish that there was some emphasis on human sympathy and knowing when to say “I can’t find something wrong with you, but it might be because I am trained in the wrong thing and you actually have something else that is presenting weirdly. You might still be sick, but you need to find a place with doctors that have access to better research facilities or newer data and novel testing methods…” or something like that. There just needs to be a change in doctors attitudes where if they can’t find something wrong then it must be the patient who is at fault and not have anything to do with the doctor having reached their skill level. If that makes sense.
Q: Many of your illnesses are quite rare. Do you have a community of people with similar experiences you can confide in?
So my illnesses aren’t necessarily like 1 in a million rare. The fact that I got all of these things together, that is kind of rare haha but that is okay.
In fact, a lot of doctors still mistakenly think that EDS, Dysautonomia, and Sjogren’s is rare, but it isn’t. It is just RARE to have a lot of medical knowledge because this diseases have been sort of neglected and are not taught as much in medical school. It is RARE that a doctor will catch these things because they lack the knowledge and training. It is RARE that a patient will get diagnosed as soon as symptoms start. In fact, for all of these conditions, patients often go 3-6 years on average before getting an answer.
The type of EDS I have is estimated to affect 1 in every 5,000 to 1 in every 20,000 – this isn’t exactly known because there have been a lot of reclassifications of the disease over the years and most recently, a lot of the criteria was re-done (a few months ago actually).
Sjogren’s affects 4 million Americans, 90% being women.
As a young 23 year old with Sjogren’s, that is a bit more rare. But yes, I have a great community and volunteer with Dysautonomia International. They have done amazing things raising awareness for POTS and other forms of Dysautonomia.
The other thing is that it is now more common for people with various things to get diagnosed with POTS whereas 50 years ago, someone with Lupus or cancer or the genetic Familial Dysautonomia gene had all the symptoms of POTS, they just didn’t get a diagnosis, it would just be blamed on their primary condition, or they would be called crazy. So, even within local support groups and online, I have found people with EDS, Sjogren’s, MCAD, and POTS for example, because they kind of go together. There are other patients like me, or very similar. Most POTS patients have varied other conditions and symptoms. Remember, it took me 4 years to get diagnosed and technically 21 years to get diagnosed with EDS, which I was born with, along with my two brothers. My mom didn’t know she had EDS until I was 21 either so she was 52 or something like that. I have yet to find another patient that had a schwannoma like me though! I am really involved in trying to create support communities for “spoonies” that means chronic illness patient (to understand that you can go google the spoon theory)☺ I am an admin on FB for the POTS group with 40k members now, I think…
Q: You seem to travel a lot for your healthcare. What do you do to ensure you have the most comfortable and efficient travel experience possible, especially when you may be feeling at your worst?
Ah, yes I do. And I have had to play around with this a lot. It takes a toll on me to travel and it has gotten more difficult. I just got back from seeing an Orthopedic Spine Surgeon for a consult in Houston which is 3ish hours away from my home in Austin. I don’t drive myself, that is the number one thing. My mom, dad, or Luke [my boyfriend] or other family member will drive me if it is a place we are driving to. I make sure to try to stay really hydrated and I might even get a few bags of IV fluids before traveling, especially if flying. I have a neck pillow to keep me from irritating my neck. I wear compression socks to prevent blood clots. As much as I would like to sleep the whole drive or flight, I do make sure I move my legs and get up and walk because I don’t want a blood clot.
I have ALL my meds really close by on hand, in a bag in my purse. I have a lot of nausea now so I always make sure I have my Zofran and extra while traveling. I bring a sleep mask to wear while sleeping or not just to prevent further motion sickness and bright lights because I tend to have headaches with my nausea. I do make sure now that I have something to puke in because lately, I have been very close to puking or have puked and that sucks for everyone. I also have an emergency bag that has everything I need to check my vitals if I crash/go into one of my POTS episodes. That has my BP cuff, a thermometer (which attaches to my iphone to take my temp and its awesome, it also tracks my temp), a pulse ox, a glucose monitor, alcohol swabs, pain stuff like hot packs, biofreeze, etc, cooling equipment (cooling towel, spray mister thing). It also has electrolyte tabs in it and things like a toothbrush in case I either forget mine or I puke and need to brush my teeth.
If I fly, I unfortunately usually have to call the airlines ahead of time and reserve a wheelchair to get through security and the gate. I really resented this at first and I would go for awhile until I would get super sick and then my mom or whoever I was with would need to go back and get me a wheelchair because I would almost be passing out or just be super pale and feel really sick. The whole process is just too hard for my body right now with how weak it is. So I just make a plan to get the wheelchair and it makes everything SO much easier. Flying is still super exhausting for me and I am still working out kinks whenever I go. I usually plan to completely rest the day I arrive from flying.
That’s it for now. Read Part 3 here!
CeCe Collins is a full-time chronic illness fighter living in Austin, TX. She shares raw photos of her day-to-day life on social media in order to help, inspire, and advocate for others. You can follow her on instagram @cece_getyoursicktogether or read her upcoming blog & vlog, Get Your Sick Together. You can follow her service dog Ruca on instagram at @right_hand_ruca.
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Photo Credit: CeCe Collins