I’ve been getting a lot of questions about my diagnosis/condition/treatment plan, so I thought I would just make one big long post. I hope this will clear some things up for you, and if it makes you think of any more questions for me, please ask!
Here’s a little background info. Last semester, I struggled to get through classes and lectures due to fainting spells, dizziness, heart palpitations, and lots of other lovely symptoms related to my heart. I had numerous doctors visits, but I ended up being able to finish my semester with straight As. This spring, I returned to school much more confident after going through a physical therapy regime, and I thought everything was going great. I had a few weird days with stomach issues, but that’s not unusual for me. As the semester progressed, my stomach started acting up more and more, but I tried to ignore it. One night, I had a ton more pain than usual, and in the morning I woke up to blood. We went to the emergency room, and the next few weeks were full of tests, procedures, appointments, and blood draws. I withdrew from my semester of classes, which was difficult, but it was a huge relief. The doctors found no answers, and we were all confused and stumped. I lost a lot of weight (I’m currently 83 pounds, and I was around 100 before.), and I couldn’t eat much of anything without lots of pain and nausea. I started feeling full within a couple bites of anything, and I had a hard time finishing meals. Most nights I spent on the couch with a heating pad trying to make the pain go away. Which leads us to today! I was finally diagnosed, and I started a new treatment/management plan a month ago. Because of this, I have finally worked my way up to eating about 1000 calories a day. It may not seem like much, but it is SUCH an improvement. I have been slowly gaining a little weight, and I hope to eventually weigh more than I did before diagnosis!
Now that you know the basics, in true Q and A fashion…
Here we go!
Q: What do you have? What were you diagnosed with?
A: In August of 2016, I was diagnosed with Ehler’s Danlos Syndrome-Hypermobility Type, and in October of 2016, I was diagnosed with Postural Orthostatic Tachycardia Syndrome. Just recently, I was diagnosed with a motility disorder of the gut-Gastroparesis. POTS and Gastroparesis both fall under the umbrella term of Dysautonomia. You will hear me use all three terms throughout this post.
Q: What is Ehler’s Danlos Syndrome-Hypermobility Type?
A: EDS is a genetic condition, which means that I was born with it. I did not catch it, and it is not contagious. It is a gene mutation that causes my collagen to be faulty. Collagen is the most abundant protein in the body, and it plays a huge part in our joints, muscles, organs, and blood vessels. Since my collagen is faulty, all of my body is affected, which is why it is called a multisystemic disorder. There is no cure, and there is not much in the way of treatment or research. Follow this link to learn more.
Q: What is POTS?
A: Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia characterized by a spike in heart rate when moving from a horizontal to vertical position (Laying down to sitting upright or sitting upright to standing.). Because my blood vessels are extra stretchy due to my Ehler’s Danlos Syndrome, most of my blood pools in my legs while sitting or lying down. When I stand up, my heart has to work much harder than normal to pump all of that blood back to my brain. Follow this link to learn more!
Q: What is Gastroparesis?
A: Gastroparesis is a functional GI motility disorder, which means that my gut does not digest food normally, and there is no cure. Some people develop gastroparesis after an illness or surgery, and their condition usually resolves on its own. My gastroparesis is secondary to my dysautonomia, which means that it is something I will just have to live with. My stomach does not empty the way that it should, and my digestion is slowed immensely in my small and large intestines. On some days, my stomach will dump all of my food out the instant it hits my stomach, which leads to uncontrollable hunger and weakness. Most days, though, my stomach empties very slowly. My food from the day before may not fully empty by the morning, or my breakfast might not be gone at the end of the day. This leads to a big build up of food in the stomach, which is very uncomfortable and painful. Follow this link to learn more.
Q: What kinds of symptoms do these diagnoses explain?
A: My EDS diagnosis explains my joint pain, joint swelling, fatigue, dislocations, and subluxations. My dysautonomia diagnosis explains my abdominal pain, fainting spells, nausea, heat intolerance, early satiety (full after a few bites), exercise intolerance, shortness of breath, low blood pressure, tachycardia (racing heart), bradycardia (slow heart), bloating, distention (my stomach swells like a balloon), weakness, chronic dehydration, fatigue, and loss of vision.
Q: What kind of doctor do I see for these conditions?
A: I have a primary care physician, an OBGYN, a gastroenterologist, a cardiologist, a neurologist, a rheumatologist, a physical therapist, and a mental health therapist. I am about to see a new neurologist who specializes in dysautonomia next Thursday, and I am very excited!
Q: What kind of treatment is available for these conditions?
A: Not much. For my dysautonomia, I am supposed to drink 2-3 Liters of water a day and increase my salt intake by a lot. I did a trial run of IV saline infusions this week, and it really seemed to help me! I am hoping to make that a more permanent part of my care. I may be adding a medication to help me retain my salt and fluids, which will increase my blood pressure and help my fatigue. There are a few motility drugs for gastroparesis, but neither are very good or safe. One is an antibiotic that will lose effects in about a month, and the other drug could cause permanent neurologic side effects if used for too long. Because of this, I have decided to manage my gastroparesis with diet and lifestyle modifications. I have a scheduled eating plan, and I do things like yoga, meditation, acupuncture, and other relaxation techniques to force my body into “rest and digest” mode. For my Ehler’s Danlos Syndrome, I could take pain medication, but they all come with side effects. I have chosen to strengthen my joints and muscles with physical therapy and decrease my pain with things like heat and ice, acupuncture, relaxation techniques, and lifestyle modifications. I don’t like to take drugs, and I try to avoid them at all costs. I do take hormonal birth control so that I have less fluctuation of symptoms throughout the month, and eventually, I will be on continuous pills for a few months at a time for even more symptom management regarding hormones.
Those are the general Qs and As that I thought would be a good introduction into the questions my friends sent in! These next few questions are the ones I received from my Facebook friends. 🙂
Q: I have a mild form of POTS, do you have any advice for me?
A: Yes! I think it’s best to research the condition thoroughly yourself. Most doctors don’t know much about the condition, and you will be the best advocate for your own care. Since your POTS is mild, I would be sure to be aware of all of the possible symptoms. But do NOT go looking for them. If a new problem is arising with your POTS, you will notice, so try not to worry about them. It’s best to stay off of support groups and message boards as well. Most of them are just competitions to see who is sickest and other negative things. Until it gets worse, which it may very well not do at all, enjoy things as they are! Remember your limitations, but don’t be afraid to push them every once in a while. Start an exercise regimen while you are feeling well, and make sure you drink a lot of water! Get enough sleep, and learn to manage your stress. Just try to keep your body as healthy as you can, and go to your doctor as soon as you have any new complaints or symptoms.
Q: What is the most frustrating thing about your conditions that most people don’t understand or consider?
A: I think the most frustrating thing about these conditions is that I look pretty normal on the outside. I am very skinny and pale, but in general, I don’t look sickly. I use a handicap parking pass, and I have gotten a lot of weird looks because I look like a healthy college student. I might seem very healthy, but that is only because you only see me on my good days. On my bad/sick days, I am curled up in bed with several heating pads and forcing myself to eat small amounts, even though I feel like I have the stomach flu. Also, when I ask to sit down or take a break, I really need one. I do my best to push through, but sometimes, I can’t. Just because I did something yesterday does not mean that I can do the same thing today or tomorrow. My symptoms change on the hour sometimes, and I have to do my best to manage them. Another thing that is new to me is my diet. I have to eat very strange foods in comparison to other people, so I like to eat before I see people. If you don’t make it awkward that I am not eating, it won’t be! I’m perfectly fine to go to dinner/get togethers and not eat. 🙂
Q: How many times do I have to visit the doctor per month on average? What for?
A: This month, I have had 3-4 doctors visits a week. Most of my appointments at this point are checkups on weight, blood pressure, heart rate, symptom management, etc. I have a few weekly appointments, which are physical therapy, acupuncture, and every two weeks is my mental health therapist. In physical therapy, I am working on strengthening my pelvic muscles to help with my abdominal pain and slow colon. The acupuncture is a trial run, but so far it is pretty relaxing and seems to be helping a bit! Next Thursday I will be seeing a dysautonomia specialist, who should be able to help cut down on the doctor visits. Eventually, I will just have physical therapy and visits like that.
Q: What happens when I get a cold?
A: I get sick just like everyone else! The only thing that makes it more severe is that all of my illnesses act up with the cold. Viruses will spike my symptoms the entire time I am sick, which really wipes me out. I don’t have an autoimmune disease aside from Celiac Disease as far as we know, so I get over colds just like anyone else.
Q: Will I be going back to school?
A: Yes! I hope to be back in the fall. However, the music program is too intense for me to jump into right away. I need to have time to continue my therapies and lifestyle modifications, so I will just be taking some general ed courses. I may return to music after the fall semester, but I will make that decision based on my health and thoughts after I finish my fall semester. If I have to choose between being really sick and studying music or feeling better and studying something that I enjoy just as much, I will choose feeling better!
Q: How am I coping with the mental/emotional side of things?
A: For a while, I wasn’t doing very well. I was fighting the reality of things, and I was really sad. Now that I know what I’m up against, I am slowly beginning to accept this as my new normal. I have several friends who understand my illnesses because they have the same things, and they help me greatly. My family is very supportive and helpful, and they help me see bad days as just bad days. When I have bad days, it’s getting easier and easier for me to accept them and wait them out instead of panicking and making them worse. I have joined an incredible support group of ladies, and together we are going through a lifestyle modification program, which has been incredibly helpful. They even let my mom join in free of charge since I am still young. Every day, I try to do something normal and not related to my illness. I have been reading a ton, watching netflix, crocheting, drawing and painting, and playing my piano when I feel up to it. Mostly, though, I have learned that the only way I can get through this is by trusting in God and resting in his promises for me. Someday, I will be with Him in paradise, and I won’t have to worry about being sick or weak or tired. That’s enough to get me through anything.
Q: Do these conditions typically affect younger people?
A: Yes! All of these conditions can affect people of any age. POTS is typically seen in young girls, and most of them outgrow it eventually. Mine is secondary to my EDS, so I will not outgrow it. EDS is genetic, so anyone who has it is born with it.
Q: Does this give me a different perspective than most?
A: Yes! I am learning lots of new things that would benefit anyone. I’m learning how to listen to my body and to stop when I need to. I’m learning to take care of myself to keep myself feeling my best, but I’m also learning that things happen. I am learning to appreciate every happy moment and to hold on to the memories of good times to get me through the inevitable rough days.
Q: Do I connect and interact with others that have the same conditions?
A: Yes! I have several friends with various chronic illnesses, and it’s so nice to have people who understand completely what I am going through. I also have a great support group, which is the only support group I am a part of. Many support groups turn into competitive suffering (I’m sicker than you!), and they really bring me down. So I just stick to my one.
Q: How do I remain so positive?
A: First of all, I’m really glad that I seem so positive to you! I just want to be honest and say that I do still have many moments/hours/days where I can’t handle the challenges. Sometimes I see my family sitting down to eat their meal, and I leave the room to cry because it feels so unfair. Other times, I have to cancel on my friends because my heart is so slow that I can’t breathe right, and I have to spend another day at home alone. During those times, I let myself be sad. I think it’s completely normal to be sad about the things I have to miss. But being sad starts to get boring. To lift my spirits, I usually turn to my bible, devotional, or friends and family. Just being reminded that God is with me and has the power to use this for good is really encouraging. I try to memorize verses a lot so that I can remember them anywhere, and I can always ask my friends to pray for me. Another thing I like to do is watch vlogs of other girls with chronic illnesses. I especially love Jacquie Blake (who has everything I do!) and The Frey Life. These two channels are the only ones I watch because they are constantly positive, but they are still honest about their struggles. They are both christians, which I think is the source of their joy and positivity as well. They inspire me so much!
Q: What can we do to help?
- Talk to me!
- Keep in contact with me. Even if I can’t hang out, I still love to talk to you all! I like to know when you are thinking of me, especially since I’m out of school.
- Keep inviting me to things! I may have to leave early or bring my own food, but I would still LOVE to see you.
- Please tell me about anything and everything. I feel so out of the loop because I am at home or the doctor’s office 95% of the time.
- Understand when I need to leave early or cancel. I am just as upset as you are!
- Ask questions! It’s usually kind of awkward when I start feeling badly because no one really knows how to react. If you are curious about what I am doing or why, just ask!
- Don’t tell me that my food looks gross. I am fully aware that pureed vegetables and cream of rice cereal don’t look appetizing to the average person. But most days, that’s all I can eat without feeling terribly nauseous. Telling me that my food looks/smells gross will make me feel even worse forcing myself to eat it.
- And finally, pray for me! Pray that I can continue to make forward progress and that I can learn to manage these conditions. Pray that I draw closer and closer to God through this. Pray that myself, my family, and my friends all come to terms with all of the changes in our lives. And pray that I can use this experience to help others.
Thank you all so much for sending questions. I had fun writing this, and it took my mind off of myself for a while! I hope that this brings awareness to my conditions and explains some things that everyone was curious about. Let me know if you have any other questions!
Until next time! 🙂