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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.
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 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.
Replied By: vaughn72 on Jul 6, 2014, 2:20PM
I am trying to get back in to back in to the workshop they need something on paper saying I have Severe Intellectual Disability, for me to get back in to the workshops. I need to redo my paper work for them again. And this there rules not mine, I be honest I am unable to take care of myself at home .And For me to go back to the workshop I need the wheel chair back with the seat belt it is for their bus . Renee been helping me out with my personal care reason is I been having 35 seizures a day and I can’t afford the co pay is 100.00 for my seizures doctor. And I had been fallen in the bathtub from seizures. And I injured my back again at home the back pain won’t go away at all. I don’t have the co pay for DR Gubb .I am having trouble walking from my seizures and seeing double vision after my seizures. This much easier for me to write down what Is going on since I can’t talk much no more at all. My words don’t come out right no more there are times I struggle to talk    . And I was bitten from several ticks could have carried the Lyme disease from the deer ticks. But I was told Lyme disease it is hard to fine in the blood. Since I had been bitten having headaches, joint pain won’t go away and flu like. But I won’t be able to come in since I don’t drive any more at all. and millers is refusing me a wheel chair and a wheel chir ramp for the house.and I have always been meanlty handicapp since birth and looking for a changing table for my wife be to dress me and etc. be easiers on her back

Replied By: jphook27 on May 27, 2014, 4:49PM
Thank you Dr. Phil for creating this most helpful App! My family and I have used it several times!!! It's the same amount as our co-pay, and it's so nice to be able to get help without being exposed to other illnesses.
Replied By: survivebyfaith on May 4, 2014, 9:30PM - In reply to sweeneykitkat
I admit I didn't read your whole entry. The title was enough to catch my attention. I, too,was diagnosed with gastraporesis, in addition to my GERD(reflux). I struggled with keeping weight on, let alone gaining weight. I was on Reglan for over four years with very little effect. I could count on one hand items I could eat without getting sick. At one time I was down to 78 pounds. All that time I couldn't get over 90 pounds

During a hospitalization to replenish my electrolytes, my primary care physician I had for not quite a year suggested I try probiotics instead of Reglan. For awhile, I was on two Align and one Florastor every day. Almost immediately I noticed a dramatic change. For a year, I have been able to eat whatever I want. I take one probiotic a day.

Ask your doctor about trying a probiotic.

God bless,

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