Revised About Me - Get to Know Me

My name is Skyler, Skye for short. I am nonbinary and prefer they/them pronouns, but don't take offense to she/her. I am chronically ill and autistic. I love to sing, and spend most of my time either playing video games, modding Oblivion, or watching way too much Youtube. I am very optimistic, which makes a massive difference in how I navigate the world.

I have a few different illnesses. I have Ehlers Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome. POTS and Mast Cell are very frequently seen in Ehlers Danlos patients.

EDS causes my body to not produce collagen properly, and collagen is in every part of your body. It causes my joints to be so loose and floppy that they often partially dislocate. I haven't had any full dislocations yet, but many many EDS patients have dislocations all the time. I consider my self lucky that mine isn't that severe, at least right now. EDS gets worse as you get older so who knows what will happen in the future. :(

POTS is a disorder where your body can't properly regulate your blood flow, so when you stand up blood pools in your legs and feet. This causes your heart to beat way to fast in an attempt to get the blood flowing properly. Unfortunately my heart doesn't realize that that is a very bad thing to do, so I get dizzy when I stand up. Luckily I haven't fainted yet. Many POTS patients faint a lot. Again, I'm lucky not to have it as bad as some people. Taking a shower is hard because POTS is massively triggered by heat, so I have to be extra careful not to fall, and use a shower chair to shower safely. Even with the chair I have fallen a few times when standing up to get out of the shower. Summer is awful for people with POTS because of the heat.

Mast Cell Activation Syndrome is a disorder where the cells that cause allergic reactions react when they shouldn't. Reactions can be triggered by anything. My biggest triggers are perfume, smoke, and most scented products like deodorant or hair products. My mom goes out on the front porch to use hairspray, for which I am very grateful. I wear a cloth filtration mask when I leave the house to help keep me from reacting. It has really been a game changer. It helps so much, but I do still have at least one reaction most days. I never leave the house without my Epi-pen, but thankfully I haven't needed it yet, although there have been a few close calls.

As I mentioned, I am also Autistic, so I don't do well with loud noises or people touching me. I actually like being Autistic, though. It comes with both good things and bad. Some good things are my ability to memorize song lyrics and movie lines really easily, my major love for modding Oblivion and the ability to focus on modding and block out pretty much every thing else. Autistic people call that a special interest. Mine is the Elder Scrolls universe in general. I do flap my hands when I am stressed or excited (two different ways of flapping for two different emotions), and I rock a lot. I'm not embarrassed by those things, which is a majorly good thing, because they really help calm me down and it is very hard for me to go out in public without some kind of soothing repetitive motion. My mom and I actually think that my happy flapping is really cute and it makes her smile whenever I'm excited and start bouncing and flapping.

I hope this has helped you get to know me a bit, and that you'll stick around for my mods and ramblings.

Chronic Illness Update - Not Great

I really haven't been doing well lately. I have some instability in my neck which is causing my vertebra to press into my spinal cord. I also probably have something called a Chiari Malformation, which is where the bottom of the brain slips down into the top of your spinal column, which means it is being squeezed. All of this is causing a lot of neurological symptoms which are really debilitating right now. I have double vision, which makes it very hard to read, and I am so dizzy that sometimes my mom has to help me walk back and forth from the bathroom. I'm constantly dizzy, but it isn't always that severe, and sometimes I can get around the house by holding onto the walls, and on a really good day I can just walk normally, but I have to be really careful not to fall. The dizziness is really bad right now.... I also have a constant ringing in my ears, which is driving me crazy. We're trying to get my insurance to cover MRIs of my neck and brain, but they are stubborn.

Some better news is that I now have physical therapy every Tuesday and Thursday, which is so wonderful. I am getting stronger, and some of the joints that wouldn't stay in are doing better now, Also my physical therapist is just an awesome person, which makes me look forward to PT even more. Over all I'm sleeping better. I struggle with insomnia and sometimes would go for days without sleep, but it has gotten much better lately. I'm really happy about that. Also sense it has cooled down I can go outside without my heart rate jumping way too high and almost fainting. My environmental allergies are getting better because of the shots I get every week. My Mast Cell Activation Syndrome (An allergy disorder where you react to all kinds of weird things, including sometimes reacting with no trigger), is still a mess, but I am on the right track with a new medication to help.

Sadly I can't play most video games right now because the movement of the camera makes me motion sick because of the dizziness. And I can't really do much modding because of the double vision. So there won't be any mods for a while unless something changes. Sorry about that.

Anyway, I just wanted to update and let you know why there won't be any mods for an unknown amount of time. If you are the praying type, I would request a prayer for my medical team to figure out what to do about my neck. If you are not, maybe just some positive energy. :) I hope you all don't mind the current lack of modding and communication. I'm doing the best I can, but I am struggling. But I'm probably the most optimistic person you'll ever meet, so I have lots of hope.