I can't feel my blank when i'm with you

 Hey my name in Anna I live in San Francisco and in case your curious I have a few disabilities the may take a bit. So What do I have? Well...How much time do you have? I have more chronic illness than I can count including asthma which is A condition in which a person's airways become inflamed, narrow and swell, and produce extra mucus, which makes it difficult to breathe. Plus, hypothyroidism is,a condition in which the thyroid glands doesn't produce enough thyroid hormone.more notable ones however are   Autonomic dysfunction can affect a small part of the ANS or the entire ANS. Some symptoms that may indicate the presence of an autonomic nerve disorder include: dizziness and fainting upon standing up, or orthostatic hypotension. an inability to alter heart rate with exercise, or exercise intolerance.   Endometriosis which is wwhenA disorder in which tissue that normally lines the uterus grows outside the uter. I also have a rare condition called Reflex Sympathetic Dystrophy (RSD)which is Chronic arm or leg pain developing after injury, surgery, stroke, or heart attack. low cerebral blood flow which is hypotensive neonatal distress. Mast­Cell Activation which is mediated by the high-affinity receptor for IgE (Fc epsilon RI) is considered to be a key event in the allergic inflammatory response. So The autonomic nervous system (ANS) controls unconscious thought. This includes heart rate, blood pressure, temperature, tearing, etc. All that fun stuff we take for granted.
Endometriosis is when cells from cells (from the uterus) travel out of the uterus and basically cause patches of skin to form where they shouldn't. Some patches are different colors ranging from clear to red with clear being the most painful and red being barely felt. Red is also the most dangerous since it can often go undiagnosed and lead to infertility. I believe I have white.
RSD is the misfiring of nerves. This causes pain when there shouldn't be and intensified pain. Mast­ cells control histamine release. It's almost like have severe allergies. The body releases an overabundance of unnecessary histamines. Some of the systems include hives, severe itching that I didn't even notice until after I was diagnosed, severe discomfort, and many other symptoms that I forget about until my medicine wears off after a successful treatment day.I received the diagnosis of hypothyroidism when I was in first grade. We didn't find out about the Endometriosis until I was thirteen and was lucky they found it so early. Shortly after came the asthma diagnosis. The autonomic dysfunction came a year later with the RSD (a suspected cause is the shock to the development of my nervous system from the Endo, but we'll get to that). We only found out about the Mast­cell Activation about two months ago. I'm 19 now.Story behind it.
Oh gosh where to begin. I guess I'll try to keep it short but I'm not sure that's possible. I had had abdominal issues for years. As they got worse and we got more desperate for an answer doctors started suspecting a psychological cause more than a physiological. They even a used my mom of having munchausen's. This included a nine day hospital stay where five days were just psychological evaluations. I guess it was partially my fault since I was a) a kid and didn't know what was a normal feeling and what was not and b) because I had become so used to hiding it. I don't blame myself at all, of course I sometimes wonder what my life would have been like if the process had gone more smoothly but I am in part who I am today because of my experiences. This is one of the reasons I strongly believe doctors should be trained to be able to spot things, such as when a kid makes a face when a doctor pushes on their abdomen but doesn't say anything. At the time I was going to a very religious school that did not, what's the word, I guess believe me, even after the surgery. Even with the picture proof in front of them. This all resulted in me having to make up the seventh grade. They were the epitome of making a bad situation worse. After pain rehab and a new school I was finally on the right track.Then, one day I was walking between school buildings and I kind of just looked down at my feet. In that moment I knew something wasn't right again. I just kinda knew. I can't really explain it. It was like my legs were heavy and far away. I think I had been feeling it for months but after the trauma of one medical diagnosis I just couldn't see telling my mom I was sick again and that we had to go to more doCtors and face more scrutiny and disappointment.
After a couple more month I finally had to tell her. I remember to this day. We were in our van driving home from school I guess, and my legs were uncomfortable so I had my feet up on the dash. I don't remember if I was able to hold back my tears but I did get it out. G­d i was so uncomfortable. I told her "I think I'm sick again." She said "I know."I think my heart stopped for a second. As I mentioned earlier, I had become very good at hiding my pain. This was of course something completely different though. More discomfort than pain. Discomforts sometimes worse. They’re is things you can do for pain. Take pain medicine rub where it hurts to distract the nerves use a tens unit. For discomfort all you can do is sit through it and wait for it to pass.I got lucky. We were immediately referred to CHOP Children's Hospital of Philadelphia, and in a few hours we had a diagnosis. For a while I muddled through. Drank a lot of Powerade (120 oz a day) went on the treadmill three time a week for an hour and a half. Then I ended up back in pain rehab, had to go to physical therapy three times a week and eventually couldn't go to school during my freshman and sophomore years of high school. Right before my junior year, by right before I mean two days into, we started to get some answers. You have to understand, I never had really tested positive for anything before. We had a party when I tested positive for a strep test. At least it meant there was something we could do. So when the doctor starts giving the results and what I thought was the famous let down easy there's nothing we can do for you speech I start to zone out. Then she starts talking about how all my reading were normal blood pressure on my arm, heart rate, but the my cerebral blood flow dropped by 10%. I had to ask her to repeat herself she also said that I don't sweat over 40% of my body which is why I over heat like a computer hard drive.I only missed nine days of school that year. I bet I can still tell you exactly for what. Two were for the original appointment, three were for a marathon that I completed on my own two feet, one was for a yearly appointment, two were a cold that my teacher had to send me home and order me to stay home, and one because I threw up one day and stayed home to be safe. My senior year I was a little more lax. I don't even want to see my attendance record  only two days were actually full on ditch days. A lot was doctors appointments and tests in preparation for my gap year in Israel. At the end of the last school year, the euphoria kind of wore off and I started to feel "not right" again. "not right" is how I used to describe the low blood pressure wife it was indescribable. My mom used to get frustrated with me that I couldn't describe it. Side note: one day after the diagnosis, my mom started "why didn't you just say something wasn't ri.... Oh". It was one of those moments when your like "see I was telling you all along. We just didn't know what I was saying." Eventually, my pulmonologist (for asthma) referred me to a neurologist friend of his to try and get to the root of my discomfort. He was very helpful and I actually was just at him today for a follow up. He referred us to a specialist on mast­ cells and a connective tissue thing they think i have, after being able to draw on my arm with a paper clip. Apparently that's not supposed to cause your arm to light up like a Christmas tree. The mast cell specialist said that the specimen they sampled had so much histamine in it it couldn't be measured. She said because we didn't refrigerate it, the sample would have beeneven more saturated than they thought. She said this could be everything or it could be nothing. Well it certainly was a huge part of it. No more heavy lung feeling (at least not when I take my nebulizer on time. I know there's still a long way to go. It's been a domino effect ever since we found out about the low blood pressure. Now because of that I get to go to Israel next year! I think it is important to note something. If it had not been for the Endometriosis, I wouldn't have gotten to my pulmonologist or CHOP. Had it not been for CHOP I wouldn't have been prescribed pain medication for my RSD. Had I not have had the pain medication I would not have gotten a long term overdose. Without the long­term overdose no one would have thought I had a genetic issue that was causing my brain to not transmit the signal for me to breath (hyperventilation). Had it not been for this suspected condition I wouldn't have been referred by my pulmonologist to the specialist who agreed to see me. Had it not been for seeing this specialist I wouldn't have gotten a tilt test with an experimental blood pressure sticker on the forehead sticker that had only previously been used in the NICU. Had it not been for this special sticker, I wouldn't have found out about the low blood pressure. Had I not found out about the low blood pressure I would not have been able to recover my academic career. Had I not recovered my academic career I wouldn't have gotten into or waitlIsted to all ten colleges I applied to. Including two Ivy league grade programs and would not be going to an amazing Israel program next year. When do so many domino effect coincidences stop being coincidences. Treatment plan(what does it do for you)?
Well, every three and a half waking hours I take medication to raise my blood pressure. I don't let that stop me. I have a watch on my wrist that vibrates to remind me. Initially it was a problem because I was forgetting when to take it and if I had taken it or not.
I also take a bunch of antihistamines three times a day. In addition to that I take a medication specialised for my disorder four time a day by two different forms. One an oral one I dilute in water, and a nebulized solution. It's kind of inconvenient at times because it's every five and a half hour and I haven't started setting an alarm for it. Sometimes I sit down at a meal eat some challa and then "dang it" moment because I can't take it anymore. It must be taken on an empty stomach. It's annoying
because then I get a bloated and uncomfortable stomach.Hospitalized ever?
Yes, before the Endometriosis discovery. Never have been since that experience. It's become a problem before. When I was getting sick a lot due to a lowered immune system I got a horrible stomach flu that lasted for days. This resulted in serious dehydration. You could make a martini on my chest my heart was beating so hard. My mom got really upset a few days later when I told her.Affects everyday life?I try my best not to let and do crazy things anyway. Every once in awhile if I get too little sleep, I can't function. Literally I can feel my body trying to shut down. I try to go home from school orrest when that happens. Also, the thing that probably affects me the most is, occasionally, I get these awful, unbearable headaches. Really can't function with those. I'm usually incapacitated on the couch with a blanket and iPad for hours on end (usually until I can get to bed). Regardless, my friends at school know I have medical stuff but they've got no clue how bad. They have no idea that whenever I'm a little edgy it because I'm waiting for important test results, or that when I'm snippy it's because I'm feeling so sick that they couldn't be in school if they felt that way. If you're having trouble picturing it, it's kind of like having the flu every day. Temperature out of whack full body discomfort and, even though I'm used to feeling like this, sometime a feeling of literally wanting to crawl out of your skin it's so unbearable. No matter what I feel physically I push through. I climb the mountains and jump those hurdles I get there no matter what. Even when it requires a rerouting or detor. We all have challenged every day of our lives. Mine are just a little different. Ever felt discrimination cause of disability?
Not recently. Unless you count teenage friends who aren't really mature enough to handle it Also did it affect your self esteem and is it something you try to hide?
Doesn't affect my self esteem. I don't really try to hide it as much as not tell people I don't really think need to know.Do you struggle with it? Nah, now that we know more of what makes me feel so sick my family's pretty good with it and so am I. I don't talk to my friends about it, only my best friend. This stuff barely phases her any more and after I tell her what's bugging me we usually move on to the next topic like its a normal discussion. Then someone around us usually points out how it's not and we start laughing.One more thing, I have this awesome, crazyenthusiastic friend who had a setback earlier in the year. She's got a lot of struggles in her personal life as well. And you know what? She's friggin awesome! She's there for everyone all the time and everyone who meets her loves her! She's one of those amazing people who you look at and say “that girl, she's going places.”