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  • Nemo Tremors

    Hi Everyone,

    We are college roommates that both have rare medical conditions. Between us we have been diagnosed with a flipped half a heart on the ride side of the chest, Ehlers Danlos Syndrome, Polysplenia Syndrome, Mixed Cerebral Palsy, Satoyoshi Syndrome, Alopecia and counting. Doctors are still trying to figure out what we have. This all started because my roommate had to write a paper for school and I told her that she should write about the bond within the medical community. From that, we thought that we could create a network that would be able to help people. A lot of groups are separated by diagnosis so we did not have a group to join. All of the potential members are asked a few questions just to make sure that the page remains a safe space for people to talk openly about living with chronic illness. This page is open to individuals, friends, and family that are impacted by a chronic illness. It is also open to people that are undiagnosed looking for advice. If you are interested and want to know more about our specific story we have a blog called the medical dorm that addresses a lot of the issues of having a chronic illness while attempting to get through college. WE BELIEVE IN YOU!

    Facebook Group Link

    https://www.facebook.com/groups/178089542639008/

    Blog Link

    http://themedicaldorm.blogspot.com

  • Erin

    I am disheartened at the fact that these forums seem to have dwindled… I just found this website today and was excited to find a place where I may be able to connect with those who face the same things that I do on a daily basis. Hopefully this site will get revamped soon.

    On another note… I have been diagnosed with major depressive disorder, generalized anxiety disorder, borderline personality disorder, and PTSD. You would think that having all of these diagnoses would make it easier to get treatment or to at least gain some understanding from the people in your life, but it really doesn’t. I’ve lost so many of my friends, most of my family members do not understand, and everybody thinks I should just be able to “suck it up” and function like a normal adult. It is so hard for me to get out of bed in the morning. Trying to hold a job has become impossible because every time I try, my anxiety and PTSD go into full gear and I get so stressed out and anxious that I start having debilitating physical symptoms (chest pain, shortness of breath, dizziness, losing consciousness, just to name a few), and most recently lost a job because I got really bad bronchitis of all things from this weakened immune system that my anxiety and stress is causing. It is so hard to try and explain to people why it isn’t as simple as just “sucking it up” because I have to pay bills and whatnot. You wouldn’t tell someone with cancer to suck it up and keep working even though they throw up regularly due to the chemotherapy, would you? How is telling someone who suffers from severe anxiety and PTSD to suck it up any different when my symptoms are just as real? Just because they are mental disorders does not make them any less real or debilitating… and that is why I have lost so many people in my life. They just do not understand and think that I am just being lazy or childish.

    So the advice that I am hoping to find on here is… if someone you love who loves you were willing to support you and allow you to focus on therapy/recovery full time, would you be willing to let them? My fiance is an amazing man, and all he wants for me is to get better and focus on only that, regardless of what that means for him. In a way, it will require a sacrifice on both of our parts, as I will have to move with him back to his hometown nearly 1600 miles away from where we currently live (which is my hometown) as he has a great job offer there that will allow him to support the both of us. I trust him completely and know he would not do anything underhanded to me, and if he really did not want to do this, he never would have offered. But a long time friend of mine does not understand why I would be willing to essentially put my fate into my fiances hands instead of standing on my own two feet. I’ve tried explaining my symptoms to her and how I have tried for almost a year now to support myself to only keep losing job after job after job because I get ill with one thing or another to the point where my employer lets me go and tells me to come back once I am in good health (which never happens). My mom raised me to be independent and essentially beat into my brain that I should never rely on a man to support me. On the other hand, however, I am continually being told by non-biased others (such as counselors) that it is okay to accept help, especially under my circumstances, as long as I am not intentionally taking advantage of the person who is willing to help me. It is not my intention by any means to take advantage of my fiance, and I fully intend to try and hold a job again in the not so soon but not so distant future once I get my mental illness under control, and my fiance knows that. Honestly, I feel like anyone who truly knows me should know that I am not some lazy mooching loser who is using my mental illness as an excuse to not hold a job… especially since I keep trying to.

    It is really hurtful that people that I have considered friends for a good decade now have turned their backs on me and think so horribly of me when I feel like I am doing everything that I can and do not understand why they see me the way that they do. I feel so misunderstood, and there is nothing that I can do to get them to see things from my perspective since allowing them to switch bodies with me for a day is not in the cards. Any advice on that front would be extremely appreciated too.

    Mental illness is extremely misunderstood in general, something that most people think you can just overcome by forcing yourself to hold a positive outlook and forcing yourself to function. My dad is bipolar and won’t even admit it because he thinks mental illness is just a bunch of crap that someone came up with to justify their immature/childish behavior (so obviously I do not get much support on the family front). And then there are those who suffer from mental illness themselves but have a different degree of it and think that everybody else is on the same level (which would be the case with my friend who thinks I should be able to “suck it up” and not have to rely on my fiance for help). It would just be nice to be understood and for once not be told that I am full of it or just lazy.

  • Anonymous12345678900000000

    Have any of you had experience with losing most of your friends due to your illness? My illness seriously affects my cognitive functioning and ability to stay awake, so I am unable to participate in any events. Just curious if you have tips on how to handle this. I am in my mid-twenties, so this is a very big issue for me…

  • roody

    ive been taking cellcept for more than a year new, two grams a day (1for breakfast, 1for dinner) and i am doing good with it

  • MN LOVE

    I want to share a true story in hopes that it touches some one out there and that someone,think before they react. My cousin was recently murdered by her boyfriend. Her boyfriend suffered from serious mental illness. He was diagnosed with schizophrenia and bi-polar are the only two the media are releasing at this time. She was with this man for over a year and half.
    There were signs she ignored she wanted to be loved so bad and also her nature was to be a caregiver. She felt she could help this man through his problems. This was so untrue.
    When people who suffer from a mental health disease,they may take there medication then within a couple weeks to a month feel they dont need it. They then spiral out of control. No matter what you say or do for this person,it’s beyond your care. You can not control another’s actions. My cousin was gone to soon,and now we have another black man in the system. Where he will get no help. Just medicated to a vegetable. If we only talk,get a dialogue going,listen and help follow threw with ones in need. They may not come to you,but you know someone that needs help. I feel helpless knowing millions of people suffer from some type of mental illness,and we sit and do nothing.
    Call your senator call your congress person let your voice be heard. Our laws need to change when it comes to mental illness. My cousin gone to soon,only if this coward would have been helped or treated properly. Like I said before now he’s in our justice system with no mental health providers and they will allow him to become a vegetable. This is an ugly cycle of destruction,that Wil continue

  • cecilia

    I have lupus SLE and wanted to know has anyone tried cellcept if so what should I be aware of. Thank you

  • Melissa

    Hi Christine, I was wondering if you have any tips or posts about surviving the first year of mother hood? I have fibro & cfs and have just had a baby, after six weeks , I’m already way past exhausted!

  • Carol

    i read this

    Expand ONCE YOU’VE STARTED READINGTHIS YOU CAN’T GET OUT! READ ON IF YOU DON’T WANT TO DIE

    A year ago A girl named Kathy was hated by everyone. Everyone made fun of her. She was ignored. Even by messages.

    One day she decided to …kill herself.
    B……eca……use………………… even her parents ignored her.
    She jumed out her window. No one noticed utill people started
    dissapearing. Kathy haunted the…m. She made them suffer like the way
    she did. She hung them slowly and stabed them over and over very slowly
    so they could suffer like she did.

    If you don’t send this message to 15 diffrent comments you will die tonight by Kathy. Because she considers it ignooring her.

  • Karon Bending

    How do you log in? Can’t see a link anywhere!

  • Mo

    What has happened to the forums? And will they be returning?

    The spoonie community was wonderful and very strong there.

  • Holty24

    Christine I would like to know if your doing any sppeches in the near future. My wife is a Lupus survivor. She got diagnosed 10 years ago and last Christmas her levels came to a pont where the doctor said she was in full remission. I would love to bring her and see and meet more women with Lupus. She is inspired by you and I would love to give her this dream!!!

  • Carwashidiot

    Tried to log into message board. Unable to do so under disqus and facebook

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