Chronic Illness Chronicles

I figured it was time that I wrote about what the illness I have are and how I experience them(because not everyone experiences the same illness the same way). There is a post about my diagnosing journey so some parts may overlap, but this will mostly be informational about my illnesses to help others learn!

Before I get into it I wanted to share that writing these posts is not a way of me to look for pity, or attention. By reading others stories I have learnt so much about my illnesses. It has also helped me feel less alone and helped me understand that what I experience is not normal. Reading or listening to others stories about their health journeys also helps spread awareness and with awareness comes answers to those who suffer from these or similar illnesses.

(Each illness is represented with their color)

Lets get into it. The first illness I was told I had was Postural Orthostatic Tachycardia Syndrome(POTS). POTS is a autonomic nervous system disorder. This means that my entire nervous system is effected by this. Things like breathing, heart rate, blood pressure, and anything your body does involuntary are effected by this disorder. POTS is triggered by movement to your body. For example when I go from laying down to sitting, or sitting to standing, my heart rate skyrockets causing other symptoms that I will mention later on. POTS is a form of dysautonomia. There are several types of dysautonomia and pots or another type of dysautomina can be the primary disease or it can be a secondary disease. Recently a lot of people who had COVID have been diagnosed with POTS because one way someone can get POTS is by having a viral infection. POTS can affect your brain, mouth, eyes, skin, heart, blood vessels, immune cells, bladder, stomach, intestines, gallbladder, and much more.

Symptoms of POTS that I experience include: brain fog, fatigue, migraines, vertigo, lightheadedness, fainting, presyncope, difficulty swallowing (gagging and choking), greyed out vision, sensitivity to light, exercise intolerance, night sweats, numbness in hands legs arms feet, tachycardia, palpitations, chest pain, low blood pressure, inflammation, increased allergies, bloating, nausea, vomiting, stomach pain, impaired motility, constipation, diarrhea, blood pooling, and much more. Now I know that is a long list and some of my symptoms overlap with some of my other illnesses so Im not always sure where it is coming from.

POTS has affected me in many ways. I had to take a year off of work/school, I was unable to drive for 9 months, I could not walk down stairs without severe tremors, evening standing some days is too much. I continue to struggle with my POTS symptoms and continue to learn how to best manage them. When I have a bad POTS symptom day, really doing anything besides lay down is impossible. You can tell just by looking at me if I am having a symptomatic day, my skin turns gray, my eyes look off, I have trouble speaking,etc. POTS is more than just being dizzy, theres a lot that it affects but I am lucky to have great doctors who have me on a treatment plan that is currently working for me.Things that have helped my POTS symptoms are, lots and lots of water (100oz a day), electrolytes, SALT, compression gear, elevating my legs, and listening to my body. There is no cure to POTS but it can get better with time and learning how to manage your flares better, as well as overall symptom management.

The next illness I was diagnosed with was Ehlers Danlos Syndrome(EDS). EDS has 13(?) subtypes each with a variety of comobitities and symptoms. EDS is a genetic connective tissue disorder. A connective tissue disorder affects the connective tissues that provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. The EDS symptoms I experience include: Joint hypermobility, loose, unstable joints, dislocations, subluxations, joint pain and clicking joints, fatigue, brusies easily, digestive problems, translucent skin, velvetly skin, wounds that take a long time to heal , and much more.

EDS affects my life daily. I have chronic pain which means it is rare that I have a pain free day, to be honest that does not really exist. My EDS makes sleep really hard. When I lay down in one way or another my body is popping out of place. I bought a special pillow, which is on my ‘Check these out’ page, that helps support my neck. This pillow has honestly helped a lot so if you experience severe neck pain I highly recommend checking that out! Often times I will wear braces to sleep such as a wrist brace because if I don’t Ill wake up and my hands will hurt so bad they’re hard to use. The thing with being hyper mobile is in the act of hyperextended it typically does not hurt me, but the pain comes after, and the pain comes with dislocations and subluxations. Exercising is hard and Im relearning how to build a strong body that will support me! Things that help my EDS: heating pads, ice packs, braces for high pain areas (knees, ankles, wrists), natural pain relief supplements, CBD, topical CBD/THC blend, I am still learning what works best for me when it comes it pain management! If you have any tips feel free to leave a comment!

Mast Cell Activation Syndrome(MCAS) is next on the list! MCAS sucks, lets just start there. Im still leanring exactly how MCAS works so I am going to insert some information I found. “MCAS is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing and severe diarrhea. High levels of mast cell mediators are released during those episodes. The episodes respond to treatment with inhibitors or blockers of mast cell mediators. The episodes are called “idiopathic” which means that the mechanism is unknown – that is, not caused by allergic antibody or secondary to other known conditions that activate normal mast cells.”(https://www.aaaai.org/conditions-treatments/related-conditions/mcas) Basically what happens is anything can trigger these allergic reactions.

Triggers vary for everyone as well as the sevreity of their reaction. I have a long list of triggers but to name a few, tomatos, eggs, soy, cold weather, heat, stress, exercise, alcohol, antibiotics, local anesthetic, food dyes, infections, and much more! Some symptoms of MCAS are flushing of the face neck or chest, anaphylaxis, rash, hives, swelling, congestion, shortness of breath, throat itching and swelling, headache, brain bog, anxiety, depression, diarrhea, nausea, vomiting, bloating, bone/muscle pain, low blood pressure, and more. Each patient with MCAS reacts differently. For me my typical reaction will look like hives, swelling of my tongue, itchy throat, GI symptoms, low blood pressure, high rate rate. In order to find some relief I have Benadryl on deck-children’s dye free! I also take cromolyn-sodium, and a histamine blocker. I also avoid triggers as much as possible and try to eat a low histamine diet! Keeping track of known triggers is what helps the most but sometimes you just dont know so it is important to always have your EPIPEN on you as well as Benadryl to combat a reaction if needed. To ensure my safety if I am alone I have a medical ID bracelet that will let others know what to look for!

The last known chronic illness I have is gastroparesis(GP). GP means paralyzed stomach. Patients who have GP can not empty food like a person without GP can. GP can be caused by damage to the vagus nerve which can happen in a variety of ways. GP is a serious disorder. With GP comes a lack of nutrition, malabsorption, nausea, diarrhea, constipation, serve weight loss, vomiting, feeling full after just a few bites, esophageal issues, and more. I have experienced GI issues my entire life and it was not until last year that I discovered the cause. Thats about 20 years of discomfort and pain. GP affects the way I use the bathroom, its either I eat food and need to run there immediately after, or I need to take medication to help me go. I am on some medication now to help with the constipation but I am still searching for some relief when it goes out faster than it came in… I also get what I call ’gagging spells’ where I feel like I need to throw up but I just dry heave for 1-6 minutes but nothing comes up. These are involuntary and usually happen before or after I eat but sometimes it is random. I also have trouble swallowing and this can lead to me choking often, or having the food ’stuck’ in my throat. These spells are scary but it is important for me to remain calm and try to let my muscles relax, breathe best I can and let it pass. I also experice severe stomach pain, so bad that even my most comfy sweatpants touching my stomach hurts. The stomach pain often comes with severe bloating. GP is a pain in the ass…literally. To help me get through GP I take reglan which is an anti nausea medication. I drink a ton of water, and stay away from foods that can inflame by stomach even more. When my GP is bad I drink Kate Farms, which I believe is also linked on my ’Check these out’ page, which is a meal replacement and is sometimes the only way my body will tolerate anything. I struggle with relief when my GP is really bad and I am waiting to see my GI to hope for a better treatment plan. GP used to affect my mental health quite a bit, it still does, but since I have been dealing with it for so long I have come to terms with what I need to do to feel good. SO I pick comfort over cute clothes, I embrace the bloat when I have to, and I do what I can to feel okay.

Please keep in mind that everyone experiences these illnesses differently. I tried to limit the graphic details that my illnesses entail but if you are struggling with any of the symptoms mentioned above send me a message on my instagram and I will be more than happy to discuss these further with you!

This post was publish on Feb 28th, which is also rare disease day. The illnesses I have often go undiagnosed or misdiagnosed for years. Bringing awareness brings answers. These very well may not be rare disease one day. With the help of spreading awareness about these rare diseases, more patients will receive the answers they have been waiting a long time for. Thank you for reading this post and your continued support.