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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: 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.
 
Replied By: elvenfairy on Aug 22, 2014, 9:27AM
I know your field is Psychology, not medicine, but maybe someone on your message boards can help... I don't know.  

All I do know is my doctors are out of ideas, and I am out of patience.  I have been ill since January, and it is NOT getting any better.  It started with cold symptoms.  I assumed, it being winter, that it was a cold.  When it didn't go away after a while, I went to the doctor.  Though they didn't see any signs of an infection, they gave me antibiotics anyways.  Yet still, the symptoms have not gone away.  I am exhasted all day, dizzy to the point where standing is a serious issue,  I've passed out at work and missed several days so I got laid off.  I have also had some hot flashes, sinus pressure, and aches all over my body.


  Being terminated has of course caused some insurance issues and so my doctors are reluctant to see me, even when I offered to pay out of pocket.  My guess is that the insurance glitch was as good an excuse as any to give up trying to help me figure this out.  I've had blood tests in extensive detail, I've had an MRI on my brain, and yet no one knows what is wrong with me.  I've also had allergy testing, and been on vitamin suplements to deal with the anemia they found a few months ago.  The problem is, all the treatments and tests have given me no cure, and no treatment that even HELPS the symptoms!  Being this sick for this long is downright demoralizing.  It's not an infection, its not lyme disease, its not Mono, it is definetly not a flue or cold... so what the hell is wrong with me?  When am I going to get better so I can have a job and get my life back?  Why can no one find any answers?  Anyways, I am open to suggestions or recomendations
 
Replied By: amandarogers06 on Aug 22, 2014, 3:27AM
I often wonder if anyone else out there feels like I do.

I am a 25 year-old female, and have a dopamine deficiency.  My movement disorder specialist has split her decision between young onset Parkinson's disease and dopa-responsive dystonia. 

I often try to hide my symptoms.  I will stick my shaking hand in my pocket, take my medication and get into my car so no-one sees, or go in a room to be by myself.  Throughout the day, I go between periods of looking normal, to starting to tremor on my left side, having speech difficulties and other symptoms.  Too much dopamine too fast means I speak too fast, fidget and move around too much and have to wait for this to 'calm' down, and too little means my left arm stiffens, I start to speak slower and can feel my neck start to tense up.  My handwriting gets incredibly tiny and illegible so much so that I learned how to write fluently with my right hand for when my left can't write.  I currently still work in a music store and can play at a decent, but not appropriate to my experience-level) and went back to attend administrative-office courses to try to retrain (I was also previously a drum instructor) and move on.

I don't want to be a burden to my family or friends, and don't want them to see me struggle.  I also don't see the point in dating because I don't know why anyone would want someone who can't be on their level.  While I feel as if I have made some accomplishments, I have also had a great deal of hurt in my life; consequently, have always found relationships difficult.  I would rather people think I am weird over telling them the truth...at least over the internet one is essentially nameless and faceless.

Often, my family's messages confuse me.  I know my family only wants the best for me, but my mom thinks it would be easier to continue to hide my 'disease' than tell people about it.  I often feel ashamed that I will never be the daughter my parents want me to be, the friend that I should be, the sister I should be, or ever the partner I should be to someone. 

This last year has made me feel the same shame I carried around as a young child.  I was sexually abused by an older female cousin from the time I was 5 to about 8 or 9 years old and never, ever told anyone.  I never felt like I really belonged anywhere before in my life, and wonder if I ever will.
 
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