IamA 20 year old woman with Lupus, a mitrovalve prolapse, asthma, scoliosis, hashimoto's thyroiditis and 8 other diseases. AMA!

Thanks for coming forward and sharing!

1. How difficult was it to get help from your insurance company?

2. How long did it take you to start getting a useful diagnosis (something better than "it is all in your head")?

3. What kinds of specialists are you seeing?

4. Are any drug therapies (or any other therapies) helpful in dealing with your symptoms?

1. I'm pretty sure my insurance hates me. I have to call all the time to get them to bill everything correctly. I already met the deductible for the year but, until that happens the bills are pretty ridiculous.
2. It took around six month for me to stop getting people that were just guessing or pretending that they knew what was going on. Now my doctor calls all the time to see how I am doing and to tell me what she is thinking.
3. I have my normal doctor who coordinates everyone else,several neurologists, epileptologist, rheumatologist, cardiologist, chiropractor, and a hematologist.
4. My most helpful medication at the moment is Depakote ER.

How many of your diseases are due to genetic defects? What type of genetic defect/defects do you have that can cause this many diseases to occur simultaneously? Were there any environmental factors that you are aware of that may have contributed to the manifestation of some of these diseases? Lastly, how many other people have you met (online or otherwise) with a similar amount of diseases?

Right now my doctors are looking into genetic issues being the root of the problem, especially mitochondrial disorders. I had swine flu and whooping cough a few months before everything started so that could have had an impact. Most people with autoimmune disorders have more than one so, I have met many people who have several issues.

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Even without accounting for the medications I have a lower life expectancy than most people. I only have one drug that overlaps but, sometimes fixing one thing will help another. For example getting my iodine back up helps my thyroid. My doctor also tries to use vitamins and supplements as much as she can to help. My body has a hard time turning certain drugs and supplements into something it can use so my meds are always being increased. This is something I am just starting to learn about though.

Have you ever dated, and do you wish to get married and have children?

I'll answer this one for her because I think she's taking a nap (don't worry she will be back.). I'm her boyfriend, so she's certainly dated.

You two rock. From personal experience, keep supporting each other and you'll get through anything.

Thanks! :)

I currently have the most supportive and caring boyfriend ever. We have been dating for almost a year and he just spent three nights on a hospital couch. I would love to get married someday but for right now I'm just thankful for everyday I get. I don't want to have children but, I would love to adopt some day!

Since you said you don't want to have children but would love to adopt, I assume you're scared of passing on any bad genes you have to your potential children?

I am scarred to pass on bad genes and all my doctors recommend against it quickly after meeting me. I also would have to be off all my drugs as they are all harmful to babies and that would be very dangerous for me. It would be considered a high risk pregnancy from day one.

How long did it take to diagnose all of these things? Did doctors write your symptoms off as nothing in the beginning?

In the beginning I started waking up being completely blind and then randomly I would pass out. They liked to say it was all in my head and write it off in the beginning but, now I have a great team of doctors who really care about getting it figured out. They are still working on diagnosing things today.

What percentage of your life is used for health related issues (medication, treatment, diagnostics, surgery, etc?)

At the moment I have been in the hospital since last Wednesday for testing and observation. Normally two or three days a month and a couple hours on the phone talking to doctors. Medications take about ten minutes in the morning and night.

I thought for a second this was one of my childhood friends. Her list of conditions is strikingly similar, but she's an Orthodox Jew (and the photo doesn't match)

On that note, have you met many others who share similar lists of ailments?

A lot of people with autoimmune issues have several disorders but, everyone is different. I have never met anyone with the exact same things or with it manifesting like it does for me but, I have definitely talked to other people who have several disorders too.

• How do you feel about taking all those medications?

• Did you take a lot of medications before all of those diagnoses?

• Do you get to go to college/school?

I'm about your age and remember when I was in and out of the hospital a lot and just want to hear your perspective on some of those things.

Hi! If the medications help I guess I am alright with it because it is a lot better then what would happen if I was not on them. A lot of my meds cause other problems too so, my doctor is always looking for other options. I grew up having to take daily migraine meds and getting sick all the time and taking meds for that but, other than that no. I am going into my third year of university as a music education major. I am giving my junior recital during the winter semester and hoping to get my masters degree in music performance. Thanks for asking. :)

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I grew up to my parents always playing Andrea Bocelli at home. When I first started waking up without vision and having health problems my Grandma told me if he could sing (he's blind) I could do whatever I wanted. My parents also always told me as a kid that if I could dream it, I had the perceverence to achieve it. That always has stuck with me. I want to show all the other sick kids that they too can do it and to never give up or feel hopeless. I'm never going to let it win.

I grew up listening to Andrea Bocelli too.. My mom loved him (I always hated it though). You have a great outlook, keep it up and the best of luck to you.

Thank you so much. I wish you the best in your endeavors also. :)

FINALLY! WE HAVE LUPUS... Have you been on House M.D. yet? Edit: You have a great smile. Keep your spirits high!

Thank You! :) I was laughing at a joke.

Thank you for doing this ama! You seem like a strong person that many could look up to :) I also have mitral valve prolapse along with dysautonomia. The only daily trouble I have is becoming easily winded from moderate to heavy physical activity & I get dizzy if I take a hot shower before I have taken my atenolol. Also, if I drink coffee or smoke before taking my beta blocker, my heart races uncontrollably & I am prone to almost blacking out if I stand up too quickly. I was diagnosed at 13 & my cardiologist explained that it would "go away" with time, most likely in my late teens...I am now 20 & still have problems with it. I am just curious as to what your experience daily with these disorders is like & if your cardiologist has told you something similar? Also, I am curious what medications you are taking for mitral valve prolapse & dysautonomia. My doctor prescribes Atenolol & advises me to drink at least 8 bottles of water a day & eat tablespoons of salt in the morning to retain the water. I mayyybe drink 2 a day & I do not do the salt.

Thank you!

Hi! My cardiologist sent me to a doctor at the Cleveland Clinic for the dysautonomia. They tried me on licorice pills and midodrine for a bit but, it did not work for me. Right now I use compression socks and take salt pills in the morning for it and drink tons of water. Water is mostly the only thing I drink. It is hard finding things to take for it that do not clash with all my other meds. Daily trouble I get is things turning black or fuzzy when I stand up too quick and getting tired very easily. I also get lightheaded, shaky, and nauseous. I am allergic to caffeine so I stay away from it most of the time. I think I answered everything. :)

Thank you for answering! It sounds like we have similar daily troubles. What were the licorice pills supposed to do for you? & also what is midodrine? I really need to work on my water intake & you have influenced me to do so, just grabbed me a bottle xP I wish you the best & God bless! Oh, I just saw your proof picture & you are totally adorable girl :)

Thanks! The licorice and midodrine are supposed to raise blood pressure but, it just didn't work out for me. I'm so glad to help! :)

Does anyone else in your family have Lupus?

And what type of Lupus do you have?

No one in my family has lupus but, they do have other autoimmune diseases. It doesn't have to necessarily be passed from someone who has lupus just someone who has an autoimmune disease. I have SLE.

How hard would you say it is balancing out a normal life? Do you find it difficult to start and maintain friendships/relationships?

In the beginning I had a hard time realizing and dealing with the fact that I couldn't do as much as everyone else, as fast as everyone else, and sometimes like everyone else. Now I have accepted what is "normal" for me. I go to university full time and normally take around 18 credits a semester. My true friends understand that I can't always do everything with them and that some times we have to slow down. I have a great boyfriend who is super supportive. We have been best friends for two years and dating for almost one year (which has been the best year of my life).

Do you think maybe you have any super powers that may be causing the diseases?

I think that there is a very high possibility that I may have a hidden super power that causes my diseases!

Hey, have you heard about the Chromosome 13 thing? I read about it in /r/Interstitialcystitis. It sounds like you have everything except maybe the thyroid problems?

Also, who's your favorite author?

I have never heard of that although my doctors are looking into different genetic problems. My favorite author is John Green.

Your boyfriend is your Augustus Waters? :D

We saw the premiere together! He said I should do this while I was in the hospital.

What's your favorite music band ? :D

My favorite artist would probably have to be Jack Johnson. I love his music and it reminds me of the ocean (my favorite place).

I hope you get rid of all your problems in the near future. I want to ask a simple question. My brother also had migraines (he doesn't any longer). He would always say something like I wanna rip my head off when I get migraines. Is the feeling that bad?

I have had migraines since around kindergarten or first grade so, I am pretty used to them. They are really painful though.

What do you enjoy most in life?

The thing I enjoy most in life is spending time with people I love. I also love playing the saxophone, going to university, and going to the ocean (I can't wait to learn to surf later this month).

are you on social security disability or do you have to work for a living? common employment sounds like it would be tough.

Last Summer I Nannied for a family. During the school year I was a full time student at university and my doctors insisted I just focus on that. At the moment they agreed with my parents and wanted me to take it easy this summer too and focus on going to the doctors. This fall hopefully they will let me get a job though. I get tired very easy and right now passing out is getting in the way but, I can't wait till I can again.

Are you following any specific diet (i.e Paleo)? Very curious to know if you've noticed any improvements. Thanks for doing the AMA!

Sorry for not getting back to you sooner but, I haven't been on in a while. I was on the Paleo diet for a while and it definitely made me feel different in a good way. I currently am living in a dorm now that school has started again and it is just to hard at my school. They do not have the best options for food. My doctor currently has me eating fish whenever available and eating tons of red meat and green veggies. I highly recommend the Paleo diet though.

As someone who has no idea what most of the symptoms you have are, how serious are your conditions? Do you require support on a regular basis?

My biggest problems are passing out and waking up without vision. I get memory loss with both of them so that kinda gets in the way haha. I have passed out in the shower about five times this year almost drowning each time and getting water in my lungs. The first time it happened my doctor thinks I may have died or a few seconds. I am supposed to use elevators instead of stairs and do some things differently from most people but, I am pretty independent.

Wow that sounds really tough to cope with, I think it's amazing how you are dealing with it pretty much independently. I know my sympathy probably won't mean very much, but I'm sorry you have developed this at such an early stage, I admire your positive attitude towards it, that can help a lot.

Thank you! I couldn't do it without my boyfriend, family, or friends. For me there is no use to dwell on things I can't change or to be sad. I would rather use every moment being happy and with all the amazing people in my life.

Do you and/or the doctors believe there is an underlying etiology for all of these issues? It is hard to believe that one person could be so unlucky.

They are looking for a genetic issue to be the cause for all of this. At the moment they are focusing on mitochondrial disorders. edit: I also had swine flue and whooping cough at the same time a couple months before everything really started. So that could have something to do with it too.

Did you have a tramatic and stressful life before coming down with all this?

No. I have had a great life. I was born a month early though and visited the emergency room a few times for various things.

I work in the manufacturing of medical devices for hemostasis diseases like lupus. A very close coworker of mine is pretty certain he is diagnosed with hashimotos and is found through a lot of testing right now. What was the testing/diagnosis like for this, and what is your treatment? He's done some research and found that gluten can contribute to it and is discussing it with his endocrinologist.

My current normal doctor was talking to me at my first appointment with her and asked if anyone in my family had it because I had many of the symptoms. My Grandma has it and my Dad's thyroid is hypo so she ran the tests right away. Mine is really far from being under control at the moment. I did gluten free for a while and it didn't particularly help me but, everyone's different

Yeah going gluten free is a difficult task, but from his research he found that the antibodies remain in your body fit up to 6 months, so it could be that long before you see the effects of going gluten free, and if you break once your basically starting from scratch :s All the best for you.

Thank you, I will definitely keep that in mind.

Damnit Otto you have lupus! I hope you get that reference. How was school for you growing up with so many conditions? Did you miss many days or had to homeschool? If you went to traditional schools, how many people were aware of your conditions and how were you treated?

I don't actually know the reference haha. In high school I did the second half of my junior year from home or the hospital. My senior year I did half my classes online and the afternoon at school so I could still be with everyone else. I misses a lot but they were very understanding. My friends in high school and my teachers knew but, that was really it. In university I still miss sometimes and my professors are very understanding. They all want to be kept up to date on how I'm doing and ask that I put my health first. All the students in my department know. Some treat me just like everyone else others don't. One girl in specific acts like I'm stupid and don't understand anything. Most people are there for me and just want to help though. Sometimes if I have a medical mask on people will come up and ask what it is and why I wear it.

So what kind of prolapse are we talkin' about here?

Sorry it was misspelled in the original post. It is a mitral valve prolapse.

Do you have have anxiety problems?

I do not have anxiety problems. I am more of a relaxed go with the flow kind of person.

ah, that's good. Mitral Valve Prolapse often seems to be associated with anxiety.

I'm lucky avoiding that so far.

do you live in america? because if so, i'd like to know how you keep up with insurance and stuff like that.

i have a relative with various conditions and some insurance companies didnt want to "cover" him because he was considered "at risk" or something like that.

I do live in America.My family actually has not switched insurance companies since I was in first grade because of that haha.

How do you feel most days?

Most days I feel tired.

I hope you get to feel better soon. My birth mother had Lupus, I never knew her but I pray for her so I'll pray for you too.

Thank you so much :)

Are you religious?

I'm Catholic.

Does your belief in God help or hinder your ability to internalize your illnesses? i.e. is there a help/blame relationship?

I do ask him for help but, I think it is more of a thankful relationship. I am very thankful for everyday I get to be alive and spend with my family and friends. I am thankful for all the support I have whether it comes from my medical team, my befriend, family, or friends.

I'm curious why Catholism spoke to you more than other religions. Were you raised Catholic?

I was raised Catholic and for me it has always just been good, calm, welcoming place.

What's your favorite TV show?

Game of Thrones or Royal Pains.

Have you sought a second opinion?

I have seen doctors at private neurology practices, the University of Michigan, and the Cleveland Clinic. All my diagnoses have been checked over several times.

Do they know what the cause of some/most of them are? There seems to be a high rate of ailments for it to be seemingly random. Do they think it is genetic, environmental, or, in fact, just random?

They are looking into genetic and mitochondrial disorders. I did have whooping cough and swine flu at the same time a few months before everything started.

Thank you for doing this - do you get annoyed at House? I feel like every time I see or hear Lupus, I think of House. it's a bad connotation that i'd like washed from my brain.

I guess it's good that people are hearing about it but, I wish that while joking about it House would at least talk about what lupus is and raise a bit of awareness.

yeah - it's a bit insensitive of me to say this - but I hear Lupus and almost always circlejerk back to "is it lupus?!".

it's sort of like "it IS NOT A tumor!!!" -From a movie that was out probably before you were born: Kindergarten Cop

That seems to be a lot of peoples reaction when they hear about it too.

what improvements do you expect from doctors side so as it would be helpful to patients,specially with difficult diagnosis? how can they be more helpful?

I am very lucky to have the doctors i currently have.They all listen to what i have to say and take what I have to say into account. They all treat me as a person instead of an interesting case and take time to call me themselves. i think other doctors can try to be more like that.

thanks for the reply.wish you all the best. :-)

Thank you :)

How many puppies and/or babies did you kick in a previous life?

None hopefully! Puppies are the best!

Weird that you're listing vitamin deficiencies along with things like lupus and mitrovalve prolapse.

So, what do you want to do with your life once the medical stuff takes a back seat?

It's more of a problem that my body has a genetic problem processing the vitamins and drugs that I take. I just listed a few of the vitamins but, every blood test without fail there is a new one that is low. I am just starting to learn about the genetic defect that makes it hard for my body to process these things. I am going to university full time currently and majoring in music education. In the winter I am giving an hour long recital on my saxophone. I would love to get a masters in saxophone performance. I also can't wait to share my passion for music with others. :)

How many times a day do people say "It's never lupus" to you?

Haha in daily life almost never but, online a lot.

Did you vaccinate as a child?

I got all my shots as a child.

Jillian?

Sorry my name is not Jillian. :)

How long have you been calling it "mitrovalve" prolapse? It's "mitral valve" prolapse.

I passed out today and am having a lot of brain fog. My boyfriend typed the title and original post out for me before leaving the hospital but, thank you for catching that.

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I have the MTHFR gene defect which makes my blood thick but, at the same time my body does not process iron properly so I also have anemia. The drugs I am on cause some of the bladder irritability because some of them make my bladder a lot weaker. Yes, I get many bladder infections but it also wears down the bladder itself and makes it a lot weaker. Some day possibly soon my doctor thinks it will need surgery so it can hold urine and be strong again. For my kidneys their six kidney stones this winter semester speak for themselves. The vitamin deficiencies themselves are caused by a bigger genetic problem that makes it so my body does not process or create many of these correctly. It also affects my drug dosages because they always need to be increased because of my body not knowing how to process these. My thyroid barely works and actually might be getting removed in the near future and eventually the cardiologist thinks the valve will need to be replaced too. My scoliosis is the least of my worries although my right shoulder is about 1.5 inches higher than the other. My doctor brags that I am the healthiest eater she has ever met. I guess when you pass out it could be considered something small but, when you do it more than 100 times a year consisting of one time where you lose a year of memory and another where you die for a few seconds it isn't something small anymore. :)

How do you suppress the urge to murder people when they whine about their "problems"?

I think everyone has their own problems and that you can't understand them without walking in their shoes for a day. So I guess it doesn't really bother me when other people whine about their problems unless they do excessively.

Ever thought about posting on /r/gonewild?

Sorry, not something I would ever do.