Day 16: What is your favorite inspirational quote?
Honestly, I've been putting this one off for a while. That's one reason I haven't contributed to this forum for so long. I have a hard time picking a favorite anything, but I'll try to find a quote I like.
"Disabled bodies exist in a state of conflict — sometimes with our minds, sometimes with the world at large, and sometimes with themselves. That push-pull space is tough to occupy. Being proud of a part of you that also saps a ton of energy, devalues you in the eyes of people youve never even met, and forces you to put your body in someone elses hands to ensure its safety? That takes active, constant, grueling work." --by Carrie in The Unresolved Body in a State of Conflict
I was going through some quotes I saved and thought this one fit the theme of this forum. It provides explanation and validation for how we may feel about disabling illness. Hopefully it's helpful to some.
DAY 14
List 5 things you are grateful for...
1) Well first and foremost I am most grateful for my two increbile boys.. They brighten my day, they are the reason I get out of bed in the morning.. Being 3 and 1 1/2 they dont see mommy as sick, they just see Mommy..
2) Of course I have to say my Husband, without him I would have fallen to pieces years ago.. When I was first diagnosed I slippped into a pretty bad depression, I was contiplatig suicide... He made me get up and out of bed everyday, he would drag me outside even if it was just walkig around the block.. He refused to let me retreat into myself.. He kept up with my breathing treatments, my inhalers, and even my Doctor apointments. He gave me the strength to keep going.. I can not find the words that describe what he did for me, and continues to do.
3) My grandpa.. He passed away 6 months go because of COPD.. Before he passed he pushed me to quit smoking and to not let this disease take over.. He always used himself as an example, he would say "Look at me babygirl, look at what happened to me because I let it take over.. I continued to smoke, I didnt leave the house.. Now I'm in a nursing home hooked up to oxygen, even though the nurses give a hell of a sponge bath!.. I love you more then anything and anyone, I can not see you in the place Iam.. I will not allow you to give up, you are so strong and you have two beautiful boys who are dependng on you. If you wont fight this for yourself or for me, do it for them." He made me WANT to fight, he gave me the courage and the strength to push forward.
4) I am grateful for my Doctor.. After my second week long stay in the hospital I made an appointment so that I could get a refil on my Nebulizer.. I told him what had happened, h didnt believe me at first.. So he went and got my records from the hospital. He came in the room, looked at me and finaly said ok.. He told me that I did have COPD and that it was pretty severe.. He told me I had to quit smoking, start exercising (Even though it was hard), start using both my inhaler and breathing treatment 2x a DAY, and really make some life changes.. And of course me being 23 I kinda rolled my eyes like blah blah.. He sat down across from me and said flat out, "Look, I know you arent taking this seriously. But this is serious, you have been hospitalized twice in 4 months, hooked up to oxygen, on bed rest, for 7 days both times. If you do not start making these changes like I told you, in about 5-10 years you will go into the hospital again, but this time you will NOT come back out. You will be 30 years old hooke up to an oxygen tank and that is the best senerio." He was the second Doctor to tell me to my face that if I didnt change I will die, that really hit home and I started makng those changes.
5) I am grateful for every single day that I am alive. Even when I am depressed or about to pass out cuz I cant breathe.. At least I CAN complain about it lol.. Every single day I have on this earth is a GIFT!!
Day 17: How would things be different if you weren't ill?
This is a good question, and it's not something I enjoy thinking about to be honest.
First I'd have to realize the changes being ill has made in my life. And that isn't easy because I was born with my primary conditions (which lady caused other health issues), and life without them is a bit hard to imagine. Often, mostly because of the EDS and mast cell disease (which we recently found has autoimmune elements), I'm often at doctor's offices multiple times a week. (This is because we're trying to catch the consequences of these illnesses. Simply put, the earlier you can catch them, the less damage they can do.) My health conditions are also limiting my ability to do much without feeling worse the next day, and my brain often can't function to its full ability (brain fog/sleepiness/lack of blood to brain). I also have a lot of medications and supplements to take--including one medication I have to make and take 3+ times a day. Because of all this (on top of other reasons), I'm still living with my parents and am afraid I won't be moving out anytime soon.
So what would life be like without these conditions?
Honestly, I don't know if I would be leaving the house more or less. All the appointments give a good excuse to leave the house, and that often helps with my depression (unless we're pretending mental illness wasn't standing in the way either). But I would also probably have a lot more energy, making leaving the house much, much easier. I don't know where I'd be going, though. Maybe I'd be able to get more into some hobbies and meet people with similar interests? Maybe I'd be driving by now? Maybe I would've been able to attend high school? Now that I think of it, if I did attend high school instead of being homeschooled, I doubt I would've ever met my partner, who has been the most supportive person in my life for over two years. I don't think all the changes would be good ones.
I also wouldn't be able to understand what my mom goes through as much. (She has many of the same illnesses. They're genetic after all.) I would probably be a lot more judgemental if I wasn't also sick, and our relationship might be worse than it is now. Speaking of family, the home environment can be a bit toxic right now, and if I wasn't sick, maybe I'd be able to leave it. Who knows how that would turn out, though.
If I wasn't sick, I might be able to be a full-time student and possibly even live at a campus. I would probably be much more independent in general, too.
Then there's the symptoms. What would life be like without the symptoms? This is difficult because, again, I've been living with many of them for most of my life. I would probably feel as light as a feather compared to how I feel now, but of course I wouldn't know that without living with the symptoms first. There is probably so much more I could do without my symptoms, but would I take advantage of that without living life sick? I can't know the answer to that.
Sorry about all the rambling. I can't think clearly right now and ended up writing whatever came to mind. Hope life treats you all alright, and you have enough spoons to make it through the day (or night). 
Day 30
This is a bit of an awkward question, but I'll try my best.
My toes and feet have swelled. I also get pain due to feet abnormalities. They have also been affected by parasthesia. I love that I can do things to help with this, like stretching and orthotics and they are much better now compared to when I used to dance frequently.
My legs and hips have also had pain/swelling. I think my legs are pretty decent looking. Loved them more when I was younger and active though.
I also get uro-genital swelling. I'm very thankful that this has greatly subsided with medicaiton. I also got UTIs frequently but I think some of those were actually swells so hopefully I can keep better track of what's what now. I love that my urinary tract functions pretty well. Genitals for the obvious reasons in my marital relationship ;)
GI tract - I've had quite a few swells here and in the abdomen in general. Constipation, diarrhea and vomitting are all things I experience quite often. For the most part they function though. I love them for not having more serious issues!
My respiratory tract gets inflammed, congested and infected a fair bit. Glad to not be on oxygen and love that my asthma is much easier to manage now compared to when I was a child.
My breasts are pretty awesome. For the most part they just sit there, not doing much, not causing me any grief. Keep it up breasts!
Arms and hands - like legs and feet, swelling pain although not as much as feet. More effected by skin conditions though. They are functional so happy for that.
As a kid I hated my voice. Now I'm just happy when it's working as my vocal cords like to swell a fair bit. Airway is pretty important, so I'm liking it when it's not swollen.
I like my face for the most part. It took has been affected my swelling. My most obvious HAE attack affected my face when I was very young. Skin issues affect it took, perfer it when the conditions aren't flared up.
My brain is overall pretty awesome. I do get headaches, not completely sure how much of it is swelling. I get brain fog as well but overall happy with how well my brain works :)
Scalp has been affected with psorasis/excema quite a bit the last few years. It's pretty uncomfortable, but it grows me some pretty awesome healthy looking hair, so happy for that!
Day 18: Do you think you have become a better person through being ill? Explain.
Good question, and I don't think I know the answer. I guess it depends on how you define "better person," but I won't go into that.
In a way, it does make me a more empathetic and undertstanding person. If I never got sick, I really don't think I'd be close to understanding what others are going through. Helping out others with chronic illness or disability also means more to me, especially since my conditions started getting worse. I'm also much more informed about the illnesses that affect me than I would be if they didn't affect me, so I can use that knowledge to help others and actually feel good about it.
But with chronic illness, I don't have as much energy. I don't do much anymore. If I wasn't sick, I'd probably have more energy to talk to people and help others out. It's impossible to know for sure.
Day 12: Briefly explain to a healthy person what it is like to live with this illness.
Endometriosis: Every period is debilitating. Even when you're not on your period, there are cysts that rupture, and it feels like a gun shot to the abdomen, and it bloats from the fluid for days. There are times you literally can't move. Getting help for it is a joke because all anyone cares about is making sure you can have babies regardless of how much you tell them you don't and that you want it all gone.
Depression/Anxiety: No matter what you do, you feel empty and hopeless or on the verge of a panic attack. No one gets it. It's the emotional equivalent of being a beached whale and having people get mad because you won't just get back in the ocean. Your brain tells you that people who are trying to help are just using you and trying to be nice out of obligation; therefore, you push them away before they can hurt you.
Exploding Head Syndrome: An imaginary bomb that only you can hear wakes you up continuosly for no damn reason.
Day 19: How do you feel about the future?
Yikes. The future. This isn't something I like to talk about. I've been avoiding thinking about the future for a long time now because it's such a scary place. So how do I feel about the future? Scared I guess. Scared and hopeless.
Because of health conditions--both mental and physical--I don't know if I can ever work a job. And that's a huge letdown for me because that's the main thing I looked forward to in my future. I wanted to define myself and focus my life on a career that I loved. So the huge possibility of not being able to work at all is a huge letdown, even if I don't care much about future careers anymore. I think it's something my childhood self still has to mourn.
Day 20: Have you met anyone with the same illness? Did it help?
I'm assuming this is asking if I've met anyone with the same illness(es) in person. Actually, I have.
First of all, because most of my conditions are genetic, my mom--and probably other family members--lives with them as well. She's done a lot of research on them for that reason, and she's passing her knowledge down to me. I'm lucky in that way: I don't have to spend decades going to doctors just to generally find out what's up with my body. Because we have similar health conditions, my mom is also able to grasp how I might be feeling physically, so yes, it's helpful. I wish she didn't have to go through it, though.
My old best friend also has POTS. Actually, I think I've met at least two other people (not counting my mom and other relatives) who have POTS. It's good to know that awareness is being spread--at least somewhat. My old best friend also had a gluten sensitivity, so we helped motivate eachother to eat gluten-free. So that was helpful, too (other than the relationship with my friend being really unhealthy, but I won't go into that). Also, one of my doctors has scoliosis, so he knows a lot about taking care of that. Plus I went to an event hosted for people with POTS, EDS, and mast cell disorders (because they're commonly found together), so I ended up seeing others with similar conditions there.
Day 21: What networks or websites have you used for support or information about your illness?
Hmm... Honestly, I can't remember any sites I've used for information. My mom has done a lot of the research already, so I end up getting most of the info from her. There's also Google, so I often use (or at least look into) any site it takes me to. Dysautonomia International and the Narcolepsy Network (if I remember the names correctly) are two resources I can think of off the top of my head. I've also found others' experiences with my illnesses to be helpful, so I've looked at a lot of blogs as well.
As for support, I've spent a lot of time on Tumblr, and that's probably where I've found most of my online support and understanding. Spending time around others with similar struggles can really make me feel less alone. It's nice because it can be difficult to find others with similar struggles in person, so many people don't seem to understand what it's like.
Anyway, that's it for now!
Day 13: Has your physical illness had an effect on your mental health? Explain.
Yes, and I don't want to explain.
