Day 6;
I would've told myself that everything's fine. Go to the doctors and keep persisting for a diagnosis. They won't be able to do anything but it helps to know what's wrong with you.
Hi, first of all I want to say I love this idea because it gives people with chronic illnesses a chance to tell their stories. A lot of well people are either uninterested or the topic makes them uncomfortable, so having a place to talk about this sounds so relieving.
Day 01: Introduce yourself. What illnesses do you have? How long have you had them?
I'm Ashley, I'm 18 years old, and I currently go to part-time college. I have some genetic disorders that are often found together, and one researcher is finding a gene that might be to blame. Still, not much is known about these illnesses, and I have to travel all over the U.S. to get care. Because they're genetic, I've dealt with a majority of them most of my life (though some are often triggered by puberty), but I haven't gotten official diagnoses until several years ago. Here they are!
-Postural orthostatic tachycardia syndrome (POTS). This was my first diagnoses, and I first heard about it because my aunt and cousin have it. So does my mom. I got my official diagnosis around age 12 I think (so over 6 years ago). Before getting the diagnosis, I thought getting dizzy all the time and going blind upon standing was normal! It also makes showering difficult and can make it very difficult to think due to not enough blood getting to your brain. It's much more common than people originally thought it was, and now that awareness is beginning to be spread, more and more people are getting help for it.
-Ehlers Danlos syndrome type 3 (EDS III). This disorder is also underdiagnosed, but similarly with POTS, its awareness is being spread. I think I got diagnosed with EDS about 3 years ago. Again, this runs in my family and coexists with POTS. It affects my connective tissue and often causes subluxations and muscles to get locked into being tight. Basically, it causes a lot of pain and can make it hard to walk. Luckily, I found a wonderful EDS-aware physical therapist who helps a lot.
Along with this, I also have mild scoliosis (my spine curves to the left a little) and vertical instability in my neck. My neck is apparently straight where it should have a curve, causing even more pain and who knows what else.
-Narcolepsy. This one is more well known, but I've heard that it might also be underdiagnosed. Narcolepsy doesn't always mean falling asleep during daily activities; actually, it very often doesn't. I've noticed my inability to concentrate due to sleepiness for a while, and for the longest time, I thought it was normal puberty stuff. When it didn't go away with age, I ended up getting a sleep study a year or two ago, and it turned out being narcolepsy. This is probably one of my most problematic diagnoses.
-Mast cell activation syndrome (MCAS). I got this diagnosis about a year ago, and it was not easy to get due to it being a "new" illness and the lack of doctors who know what it is. This is also one of the most life-affecting diagnoses, and it's commonly found with EDS and POTS. Though I was diagnosed with MCAS, my doctor is thinking I might actually have systemic mastocytosis, so we're monitoring my tryptase, which is high but below masto range. The skin symptoms I've been getting have lead us more in that direction.
Mast cell diseases (like MCAS and mastocytosis) are really hard to explain due to how complicated they are. They're generally known as allergic diseases because they cause your body to act allergic to things that aren't "real" allergies and cause many people to enter anaphylaxis without warning. But it also affects the stomach, heart (many researchers are connecting it to POTS), lungs, skin, and brain (it can actually be the cause of psychological disorders in many people).
-IBS. This one may not be chronic for me and started pretty recently. It turns out I also have bad SIBO (small intestinal bacterial overgrowth), which very commonly leads to IBS. I've had symptoms of SIBO most of my life, and even though it's really simple and common, doctors have failed to think of it. Even if it goes away with SIBO, I have to be on a very restrictive diet to keep it from coming back. So, basically, the life changes are chronic. IBS can also be easily caused by mast cell disorders, so there's that.
-Arnold Chiari malformation type 1. This basically means the lower parts of my brain have sunken in to part of my neck. This can block spinal fluid from flowing and cause a lot of other issues. It often coexists with EDS. It can cause vertigo issues and a lot more, and fixes include surgery and physical therapy.
Doctors have also suspected endometriosis, tethered cord syndrome, and bilateral chronic papilledema. Basically, everything's a mess right now. I'm also having symptoms of psychological issues, and my mood constantly swings up and down every day. Don't think I am able to handle the two classes I'm taking right now. But that's a different story.
So sorry about the long rant/explanations about everything. It really feels nice to be able to talk about all this. I wish you all the best and loved hearing your stories! 
@huggerofcats
Well now I just learned that getting dizzy when you stand up isnt normal! 😂
Wishing you the best, thanks for sharing. <3
Day 2: How have these illnesses affected your life?
Boy, have these illnesses affected my life. Yesterday and the day before, I had a huge mast cell attack that lead to breathlessness, loads of pain, palpitations, rashes, skin spots, a fever, vertigo, and me feeling like I wanted to escape my body. Today, my body is still recovering, and I had to contact my professors about rescheduling and exam and turning in assignments late. Hopefully they'll be understanding.
The narcolepsy gives me problems with school and concentration due to being sleepy all the time. I also waste way too much time sleeping because of it. I've been on 15mg of Adderall because other medications caused weird side effects, but it doesn't seem to be helping much so far. Narcolepsy is probably also what causes the chronic headaches, but I'm not sure.
POTS leads to a bunch of crazy heart symptoms, and due to blood not reaching my head, it affects my thinking speed, as well. It can make exercising quite difficult, too. It also causes anxiety due to a fast heart rate.
EDS III mostly just causes a lot of pain. Throughout the day, I need to pay close attention to how I position my spine and joints to reduce pain, and I need to be wary of a lot of exercises, especially stretches. Doing physical therapy also helps with my EDS, but since I'm supposed to do it three times a day, it takes up a lot of time.
I don't think my chiari malformation and neck instability affect me as much as the others. I'll just get random days where the vertigo gets really bad, making walking pretty difficult.
The SIBO/IBS issue causes pain, as well. I also have to go on a strict diet to kill off and keep away the bacteria.
MCAS/mastocytosis affects everything and can cause the symptoms of all my other conditions to escalate. It can also be really difficult to learn what your mast cell triggers are because they can change by the day. Many days, I'm knocked out with inflammation and flu symptoms. Other days, I get bad allergic reactions to things, and I can't tell what triggered them that day.
So, basically, my illnesses take a lot of time out of my life, and I have to be careful not to push myself. I've been having to come to terms with the fact that I can't finish college at a "normal" rate, and I can't beat myself up about it. On the bright side, my illnesses have caused me to be pretty informed about how the body works! 
Day 22
How do I feel that I have been treated by the medical system? Overall, pretty horribly.
Getting a diagnosis in general should not take decades, although that's fairly common place. The sad thing is I had an abnormal result for a test that's often used to screen for HAE and it was brushed off as being something else.
The system itself is frustrating although I am relieved I don't have to pay to see a doctor or to go to the emergency room. There should be a better system to track things, my meds, condition, how to treat it, tests I need, etc can't be pulled up easily. The system for handing out of blood products has been pretty horrible and abusive - threatening to cut me off for their mistakes, but I do think that's improving.
Doctors have blamed things on me just being stressed out. Many don't listen to what I need. Luckily I also have some awesome ones.
Day 3
Initially, a friend suggested the possibility of PMDD. I was skeptical, but started monitoring behavior patterns, especially when my anxiety or inclination to be more depressed and argumentative startes becoming unbearable - for myself and those around me.
I looked at a few lists of symptoms online, one of which said "if you have (some number) out of these symptoms, you may have PMDD." Well, I was well past that number. I think it was something like ten of the 11 symptoms. I talked to an acupuncturist about it and she referred me to an awesome doc who took me seriously when I discussed how my mood disorders were manageable any other time, but it was unbearable most months for 6-9 days before my next period started.
Now I'm trying to get healthcare again and I have to find a new doctor - she got a job in another state.
CFIDS/ME is another story. While a relapse is something I keep an eye out for, I was in my teens when I was diagnosed. My very patient and concerned doctor listened to my ongoing symptoms and never doubted me. She was a hero. I was tested for everything under the sun, and it all came up negative. The only tell tale signs in the lab was that my white blood cell count was unusually high. Basically, my body was fighting itself as if there was still a virus there to fight (and maybe there was.)
Day 13 : Has your physical illness had any effect on your mental health? Explain.
Yes , it did. I lost lots of my self confidence and self worth. I even was doubting myself: whether the pain I was experiencing was real or I imagined it. Was I having an over active imagination ?Was my pain threshold so low, ?why can't i just endure it ? How do I manage the children, their activities, their school? How to manage the peak season at work? How do I explain to colleague to avoid getting duties under the heat/sun? How to tolerate the daily traveling ? Questions, questions, questions, I had questions running through my mind 24/7, so much till I was so exhausted and full of apprehension. Being anxious was a constant state I found myself in and it ate away on my faith I had in myself.
@faithlove1111
Wow, this explains life with chronic illness so well imo. It's so easy to question and constantly doubt our symptoms, especially when they go away for a bit. Even today, I've been sitting here thinking, was the attack really that bad? Could I have actually taken that exam today? Did I just reschedule it to put it off? Am I lying to my professors? And the list goes on. It's a really hard habit to break.
@huggerofcats, be patient with yourself. Give yourself a break if you are pushing yourself too hard. Always listen to your inner voice. Take care.
@faithlove1111 Thank you so much. That was so good to hear. Same to you if you need it.
@huggerofcats
Day 3: How did you get a diagnosis?
Wow, this is a really long story. Honestly, for most of my diagnoses, my mom came up with the idea and had to find doctors who would listen to her. This took a while.
When I was very little, I remember getting constant hours long pain that left me in tears. My family thought they were growth pains, but I still get the same pains now, so I don't know. I also had constant rashes, chronic bloating, and stabbing joint pains a little later on in my childhood (maybe around 8 years old?). I think I also lost my vision upon standing around then, but since it was so normal for me, I thought it was normal for everyone else. This was around when my mom's health problems got really bad, leading her to begin seeing doctors. Due to my health problems, she brought me along to a lot of them. My mom started to delve into nutrition and other health-related information and tried multiple diets. One of the tests we did revealed some Lyme's disease markers, so a doctor put us on antibiotics. I also tried following a bunch of other suggestions that didn't really work for me. The antibiotics also did more harm than they helped, and we're still not entirely sure if I have Lyme's or not.
My mom didn't seem to get better after the Lyme treatment, either, but she did hear something online about how mold can affect your health. We got our house checked for mold, and it came back positive. We ended up living near her family in another state while the house got checked out. We ended up staying there for three years. Meanwhile, we still tried to avoid in outside and in buildings. (So many buildings have hidden mold in them, which escapes into the air.) We saw a doctor who treated mold illness, and my mom had multiple sinus polyps, and I had nothing.
Around that time, I was going through puberty. That's when a lot of my symptoms suddenly got worse. I used to be a morning person who could sleep for 8 hours; then I ended up sleeping 14 hours a day. My family thought it was puberty, but of course, it didn't stop when puberty did. When the sleepiness slowed down my ability to work on school, I ended up feeling really helpless--like something was wrong with me. Still, no one considered a sleep disorder. (If anything, I think my mom considered a learning disabilty.) My dizziness also got worse around then, so I went to a heart doctor because POTS ran in my family. The tests came back positive, so that's one diagnosis down.
Year and years later, when I was in my older teens, I finally got a sleep study, which came back positive for narcolepsy. I also saw an EDS doctor, who diagnosed me with EDS III. My mom has been researching mast cell disorders for a while, and since mast cell doctors are rare, we booked a flight to another state to see a top mast-cell researcher there. I got tests run, and the results were definitely positive. The professional doctors actually knew what illnesses commonly coexisted with things like EDS and MCAS, so they gave me wonderful suggestions on what doctors to see next. Through those doctors and the help of my mom, I got my other conditions diagnosed. All of this has felt so sudden.
Meanwhile, in the past year, the symptoms have worsened, so I'm hoping to get any other possible conditions figured out, then heavily focus on treatment. Not much is known about a lot of these illnesses yet, but research is being done, so hopefully better treatments will be invented soon.
SORRY THIS IS SO LONG. OOPS.
Day 14 : Give 5 things you are grateful for ?
1. The presence of my children in my life
2. My spouse's fantastic common sense and support
3. The love and support I experienced from strangers, lay people I see daily , my sister and most definately my very long list of students.
4. The many Opportunities I keep getting to meet and see new people , places and challenges.
5. Faith : a strong faith in life which was restored by a lovely human being and a group of amazing people who helped me without any expectation or judgment.
Day 4: How have your friends and family reacted to it?
I haven't really talked about my health issues to "friends" (people I sometimes talk to) much. When I have brought it up to them before, they didn't really know how to react. My boyfriend, on the other hand, has been wonderful. He believes everything, and I can vent to him whenver I need to. He's also really supportive and seems to understand more than anyone else I've met who doesn't have a chronic illness.
I don't really know what to think about my family. My mom has really similar health conditions, but she has a lot on her plate and isn't always emotionally supportive or trustworthy. She's also done a lot of research for me, which I'm extremely grateful for. If it wasn't for her, I probably wouldn't have gotten most of my diagnoses or treatments. It can be a bit hard to tell what my dad thinks. We're not exactly close, and some of the comments he said have made me think he doesn't really understand what I go through with chronic illness. Overall, he hasn't really said much about it. Maybe I just need to explain better. My brother and I just live our own seperate lives, so I can't say much about him.
Day 4: How Have Your Friends & Family Reacyed to It?
PMDD has wrecked most of my personal and romantic relationships. There is a time span from 6-9 days before my period where my mood swings are tough for even the most patient person to deal with. The fact that I temporarily have feelings that people I love dont love me anymore or are lying really is hard for myself and others to cope with. Even knowing its not totally me and its my condition, not everyone can cope with it. On top of this, I often fe ill or extremely uncomfortable. I wouldnt want tobe around me, either. Platonic friends are a little more understanding and comforting, tgat said, they don't usually have to endure the worst of it.
