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Disease and Illness

 
Nothing makes you feel more helpless than when you’re in pain or watching a child, spouse or parent suffering. How do you cope with illness in your family? Have you been diagnosed with a chronic disease? Have you survived a debilitating illness? Do you worry about world health epidemics affecting your family? Share your stories and support for others.
Comments
Replied By: kmcewien on Nov 10, 2014, 8:41PM
I'm hoping someone at the show reads these messages and can pass this message on to the producer for Shemida's episode.

I'm wondering if Shemida has been tested for an MTHFR genetic defect.  It's a genetic issue with processing b-vitamins that elevates inflammation, and it causes all kinds of issues. It seemed like Shemida's list of issues pretty much exactly matches the list of issues it can cause.

One thing that makes me think it is an MTHFR issue is that it started right after a gastric bypass.  It could be she was heavy to begin with because of the gene, she was driven to eat more to correct her levels of folate.  When she had a bypass she removed her body's ability to drive her to eat more folate, and then she got sick.

Please, please, please pass this information on to Shemida and her doctors.  The treatment is literally just taking therapuetic levels of methylated b vitamins (especially folate, b6, and b12).  It's simple, it's cheap, and if that's the problem her health could be restored very quickly.
 
Replied By: positiveonly on Nov 10, 2014, 8:38AM
good morning

I was a very healthy 40 yr old woman up until Aug 15,2012. This day my life was stole from me by a rare and little known syndrome called Guilliane-Barre Syndrome GBS. What is it you ask, well it is when your very own immune system attacks your very own nervous system. I was lucky enough to pull the lucky ticket and win the lottery of health this day. I went to the hospital ER 3 times, my GP 1 time and no one knew anything, in fact the very first Dr sent me home telling me it was in MY HEAD!!! Hahaha I still laugh to this day, because in my head turned into clinging to life in less than a week. I am now left with residual numbness/pain (which I try not to pay attention to), I wear plastic AFOs on my legs so I can support my body. While I was sick, they had me on a ventilator, which they most likely hit my thyroid, now I have no thyroid function. So I am tired, in pain, and have a hard time moving. Had to leave my job, when my family could not afford it, stress makes my condition worse, so I try not to stress this. I stay positive even though curve balls are being chucked at my head......so when people complain they are SICK and the doctors can't find ANYTHING wrong with them, my sympathy is not there. I had little to no tolerance for hypochondriacs before, well now I have none AT ALL.

See the thing is your mind is the most powerful medication you have, you can make yourself well, you can make yourself sick (some things out of control) but for the phantom well... God chose me to have this horrific syndrome where I spent over 11 weeks in a hospital (should have been longer,but I am stubborn). I am choosing to make a difference in others lives. If you truly believe there is something wrong then pursue that, sometimes the doctors (SORRY DR PHIL) are very wrong. Those of you in search of the answer......maybe it lies within you. Choose to make yourself better, think of those little children that have cancer and things, they REALLY have something wrong, they are smiling. Have you ever asked why??

Think before you search for illness!!
 
Replied By: lepsychic on Oct 6, 2014, 9:40PM - In reply to lepsychic
     We are just the poor, the unwanted, the unloved, the uncared for and the attacked. We aren't the usual teenaged druggy or hooker, or deluded money giver for fake love-lifes. Dr.Phil and his TV show doesn't have enough money for the serious ills let alone those of us who only have a little problem.I don't miss his show from sabotaged tv. Too bad he never cared for me because I could have warned him about his relative who got acid in her face. How is she doing anyway? Bet you gave her a lot of money, then and now.

     Don't bother trying to care about other attacks, missing or murdered people. You can't handle the truth, only your simple social psychology.

    

 
 
Replied By: mckeenoel on Oct 6, 2014, 1:54PM
this is a letter my daughter wrote about what she goes thur on a daily bases .

written by my daughter jeannette jacks,

You don't know where it came from but you slowly start to realize something is wrong with you; you start getting light headed and your vision starts blacking out at random times when you stand or move too quick. It gets worse over time; you find that walking it off doesn't do anything anymore, it sticks around no matter how long you try to walk and keep your eyes from going tunnel-vision. Then one day you faint, and it's the worst thing you've ever experienced. You stay there on the floor for a long while, not having the energy it takes to even move your arms.
You go to the doctors and they run tests, fainting is no laughing matter, but nothing comes up. All the AKG's and blood tests are normal, but there's something weird with your pulse when you stand; along with your blood pressure. It's not enough to diagnose you with orthostatic hypertension. They finally rule that you're dehydrated, pump you with some fluids, and send you home, but you don't feel any better. Over time the ill feeling goes away and you can live a normal life again, but you're worried about passing out. The tunnel vision and lightheadedness never really goes away, but it doesn't bother you as much. Then suddenly it hits you like a ton of bricks one day, and you can't escape it. You start feeling ill all the time and your body starts to betray you. Some days you can barely force yourself to eat as your stomach becomes so upset you feel like you're going to puke at any moment, and any extreme temperature makes it nearly impossible for you to be able to do anything.
You're always tired, you don't know how it feels to be fully rested anymore. Even after twelve or more hours of sleep, you're exhausted; getting out of bed is a chore within itself and doing normal daily routines becomes harder. Dehydration is something you always have to look after; even a single afternoon without a few glasses of water can wreck havoc on your body; your heart beats irregularly without any real reason and you have chest pains and heart flutters, standing is impossible and turning is a dangerous task and something you try to avoid doing pretty much any moment you can. You start getting sick; a lot. Viruses and infections and fevers become something you're so used to that you can easily tell them apart. Headaches happen normally, seemingly for no reason. All the while, through all the tests and xrays and CAT's and MRI's, no doctors can find out what's wrong with you. You've had so many blood tests you can point out spots where the needles have run through your skin time after time again and come back with absolutely nothing. Hospitals and Emergency rooms begin to get on a first name basis with you. They see you often and you see them often.
After a long time waiting, you finally find the doctor who tells you what's wrong. It's something with your nervous system, and they can't even tell you why it's there. They tell you there's nothing they can give you to cure it, and it's something you just have to learn to live with, and manage the best you can in till you MAYBE some day grow out of it. You get relief at first knowing that maybe there's a chance of hope for you that you might be able to finally be normal again and return to the normal life you had. They don't tell you that it could possibly give you strokes or that you might never grow out of it. They don't tell you the struggles it causes as you try to live with this disease that makes your body defy everything you try to do.
You begin to forget how it feels to be healthy, normal. You always feel these symptoms slowly out of reach, not every totally gone. Your friends leave you when you start to not be able to do anything; they betray you and leave you, stop checking up on you. Everyone begins to think you're faking it and no one believes you because the only thing they ever see is the shaky hands and pale complexion; there's no real signs to show what's going on besides the trail that it leaves behind. Depression becomes a thing if it wasn't already, as you find yourself trapped inside a house unable to do anything. Exercise is hard and often leaves you tired within short amounts of time and weather determines whether or not you'll be outside that day. Your sensitivity to heat and cold becomes so finely tuned that you can't even enjoy hot baths for more than ten to fifteen minutes at a time without your heart beating so heavily in your chest that you can feel it pulsing in your face and it ripples the water. Antibiotics and medicines become something that you become insanely familiar with. Your immune system has weakened because of this dysfunction you live with but it's not serious enough to consider you Auto-immune deficient.
All the while you sit and walk around and try your best to live a life where no one believes that you're sick; knowing what everyone thinks of you and thinks about what you're going through.
Try to tell me I'm not sick, go ahead. Look at me right now and tell me I'm not sick.


I am wanting to build an awarness to POTS aka autonomic dysfunction .
 
Replied By: lepsychic on Oct 5, 2014, 6:24PM
I have no cell phone to use to contact a doctor to get a diagnosis and if I could where would I get a Prescription for an anti-biotic?
 
Replied By: kallen91 on Sep 20, 2014, 11:55PM
I was diagnosed around 2010 I believe. Normally patients with this disease are affected in their kidneys and lungs, but for some unkown reason, my WG affects me in my pituitary. No one actually knows what causes this disease, and I believe it is genetic. I went blind in my left eye within hours after months of trying to figure out what was wrong with me. Before they said it was a tumor in my brain that was bleeding and gave me emergency surgery to remove the mass, I was having symptoms of terrible migraines, that were constant and would never go away, I couldn't sleep barley ever I was lucky to get an hour a day, and I was always vomitting and couldn't hold anything down except water and fruit if I was lucky. I was in ICU at Vanderbilt, for two weeks, until they told me the tumor was caused by too much spinal fluid in my head, so I had another surgery at that point where they put a VP shunt in my brain draining the spinal fluids to my stomach. I was in ICU again, but this surgery was much worse when it came to recovery, I was way too weak to even move out of my bed and I was vomitting everything I tried to eat up. I was in a lot of pain, and had a huge scar across the side of my head, and straight down my stomach. Not to mention they shaved my hair off, so that knocked me down a few notches within my self esteem. They had me on prednisone for a while which made me feel so much better, as the steroid keeps my WG at bay. Unfortunately there is no cure for this terrible disease and it is extremely rare. The prednisone stopped working and so they put me on Dexamethazone (Decadron), they eventually had me on the highest doage they could which was 16mg. TheDexamethazone, caused me to have the same symptoms you would have if you had Cushings Disease. I gained over 200 lbs. within about a year, and it caused me to have abnormal stretch marks all over my body. I was on this steroid for about 3 yeras trying to ween down, but very slowly. This drug also caused me to develop type 2 diabetes, and Avascular Necrosis in my right hip, if you don't know what that is then please look it up, it is very painful and very dibilitating especially if you're 400 lbs. I am on disablity because of the Avascular Necrosis, and the WG. I was put on about 12 different medications on and off. I see about 5 doctors spread throughout the year. Eventually they tried two mild forms of chemotherapy called Cytoxan, and Rituximab, and an immune suppresant which I'm still on now. The chemo treatments seemed to help getting me into a very slow remission. I will always be on a low dosage of dexamethazone for the rest of my life. I am doing a lot better. I am weary that not enough people know about this disease as it is hard to diagnose. I wish to bring more awareness to more people so that they won't have to be permanently blind like I am now, or worse even die and never have known about this disease. There are more people out there that have this disease, but it goes undiagnosed. please look this disease up if you have any suspicions. If you feel you do make sure you see a doctor immediatley, and if you feel that they have mis diagnosed you, continue to go and ask for an MRI. Thank you for reading and please stay strong.
 
Replied By: elvenfairy on Sep 17, 2014, 8:08PM - In reply to philhubble
My cousin has been in a wheelchair for 15 years because he had a tumor in his thyroid no one found until his brain swelled.  The brain injury put him in a coma for a month, and now he has no control of his legs, and has difficulty talking.  The way he keeps positive is by finding ways to make a difference in the new life he lives.  What happened to my cousin is visual proof of what happens when doctor's have too much of a "wait and see" attitude.  Now he advocates for other people who are ill.  He can't drive a tractor any more, but he designs and plots what crops will be grown on his family farm.  He had dreams of being an olympic skiier.  Now he enjoys sit-down skiing with his friends on either side, wizzing down the mountain.  


Life sometimes takes traumatic turns.  The best thing to do is keep going, whatever new road you may face.  Find things to be happy about, things you can still do or even better, start doing.  If you're in a wheelchair, maybe you have time to knit or sew blankets for charity?  If you can't run but like to exercise, maybe train for a bike race, or do a 5 k in a wheelchair?  I've seen people in the Boston Marathon in wheelchairs.  If you can't hold down a job, maybe voulenteer a few hours?  If you can't leave the house, be a big face online?  There are always things you can do to make life worth living, to contribute to the world and your community.  Your life is different, but it isn't over!  You can be strong, look at all you've managed to go through already! 
 
Replied By: elvenfairy on Sep 17, 2014, 7:59PM - In reply to oceanentity
I will look into adrenalin levels, thanks for the suggestion.  Fingers crossed!
 
Replied By: philhubble on Sep 16, 2014, 12:06PM
My name is lynne. I am suffering from depression because of a procedure given to me 4 years ago by a bad doctor that left me forever crippled. I am hoping that I can meet some nice people on this blog that might be going through something similar . Please help me and I hope to help you also.
 
Replied By: oceanentity on Aug 28, 2014, 11:14AM - In reply to elvenfairy
hello i have the same symptoms as you , i saw a Dr who specialises in bioidentical hormones ( as regular drs wont test for this) ive been diagnosed with adrenal fatigue. google it from a legit source. only these types of drs will do the proper saliva test for cortisol levels over different times during the day over a short oeriod of time. you never know ? this could be it.
 
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