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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: msbhavn264 on Feb 11, 2015, 5:01AM
Almost 4 years ago I was diagnosed with Idiopathic Pulmonary Hypertension.  It is a non-curable, but treatable disease.  Presently, there are only 12 treatments available ~ 13 if you count heart/lung transplant.  It is something that I will have for the rest of my life and I will die with and from this disease.  When is the big question.  There is minimal knowledge and research for this disease.  I believe the statistics are somewhere between 1 in 1million are diagnosed, but many have it without knowing it for quite some time before diagnosing.  I currently am on one oral medication and another that is delivered thru a pump sub-cutaneously.  Both of those meds costs are astronomical !! I am on many other medications also, diuretics are a biggie since that is a HUGE symptom of Pulmonary Hypertension. 
My life has changed so much since diagnosis.  I had to give up my career as a nurse.  I had to go on Disability.  I now live with my daughter and her family.  I'm still trying to get use to the "new me" and that's so hard when I want the "old me" back.

One question to you, Dr. Phil, have you ever done a show on Pulmonary Hypertension ?  
If not, I think it would be a great idea because it would make so many people aware of this disease and people need the knowledge of it.
Replied By: msbhavn264 on Feb 11, 2015, 4:52AM - In reply to proud2beeme
My daughter has recently been diagnosed with Hashimoto's.  She is having a heck of a time dealing with it but she is finding ways and constantly researching.  She currently takes Armour thyroid medication and it is an absolute wonder for her.
Replied By: krissy888 on Feb 4, 2015, 1:55AM
I have suffered with interstitial cystitis(A Chronic Bladder Disease) since I was 13 years old. I was always diagnosed with UTI's, but have came to learn in the past 5 years I was mis-diagnosed. This disease causes chronic pain and UTI symptoms. The only thing difference is when insirting a camera inside my bladder you can see all the damage that has been caused through the years. My body has built a tolerance against Anti Boitics due to doctors treating me with UTI'S. I am at the point now where i suffer everyday with multiple symptoms. consistant blood in my urine, frequent urination, or none at all. and extreme pain in my bladder, back and lower belly. My right Leg litterly gives out with pain. it sometimes goes Numb. any help or information to deal or cope with this disease would be much apriciated. currently undergoing Bladder installiations to see if it will help... there has to be something that will help? i am only 32 years old and suffer great deal of pain....
Replied By: adamtimz on Jan 16, 2015, 10:58PM - In reply to sloomis
I know what you mean. I'm currently taking 19 pills a day, I've had brain surgery to remove a damaged portion of my temoral lobe, and I had a Vagus nerve stimulator implanted in me. After all of this I'm still having siezures every day. It's frustrating, but I guess it's would be a lot worse if we weren't taking the meds.
Replied By: cindycharlieam on Jan 8, 2015, 4:17PM - In reply to proud2beeme
I have hashimoto's, fibromyalgia, bursitis IBS and this list goes on and on.  I work full time and it is very difficult as people don't care or don't understand chronic pain and autoimmune diseases.  The only people that do are those that suffer with them.  What are you taking?  I see many physicians and am trying new therapies for pain management as I have to work full time.  I have a hard time walking at work but I have to keep going.  I also have depression and anxiety.  I understand what you are feeling.
Replied By: afrenchie on Dec 22, 2014, 12:28PM
In the "I'm Divorcing My Real Life Mommy Dearest" episode, Dr. Freda was speaking with a woman who takes OTC pain medication for chronic pain.  Woman reported taking OTC pain medications daily for 10 years to help manage her pain.  While Dr. Freda addressed alternatives to explore for pain management, I was extremely disappointed that she failed to advise this woman of the damage she could be doing to her liver and kidneys.  Ibuprofen and acetaminophen are TOXIC to your liver and kidneys, not just by one-time overdosing, but also by prolonged use.  It is also very important to avoid other medications such as cold medications and Rx pain meds that also contain ibuprofen and acetaminophen (Norco, Lortab, Vicodin, etc.) when taking OTC pain meds.  Taking multiple medications with ibuprofen and acetaminophen will overdose your system and potentially cause irreversible damage to your liver and kidneys.  Why didn't Dr. Freda address this danger?
Replied By: teresaols on Dec 17, 2014, 6:31PM
Dear Dr. Phil,

I have never seen you talk about COPD and how it has affected so many lives.  I was a smoker for almost 50 years and I quit 7 years ago.  I grew up in the era where all kids then thought it was really neat to smoke. My dad knew I was smoking and he told me that I had to buy my own cigarettes.  And at that time they were only about 25 or 30 cents a pack and I babysat for extra money so I could buy my own.  The Dr. that I have been going to for the past 30 years kept trying to get me to quit smoking, but as usual I knew better than him and I continued. Well, I am paying for it now.  I am on oxygen 24 hours a day and use a nebulizer.  I also take pills.  My doctor just says I have tired lungs, but I keep trying to get by.  I have a pulmonologist too, and I started seeing him about 3 years ago and he told me then I might live for about 5 more years.  I'm trying to prove him wrong.  I can walk about a mile with the help of my husband and my walker and I go grocery shopping with him.  As long as I have something to hang onto I do really well. Plus I have a travel oxygen cannister.  This is a devastating disease and a lot of people have it.  I hope you will be able to show interest in it. Teresa Olsen
Replied By: sloomis on Dec 16, 2014, 1:37PM
Why do I have to be on 20 pills? Its taking my over the edge.
Replied By: proud2beeme on Dec 8, 2014, 2:50PM
Hypothyroidism ( Hashimotos disease) is killing me and there is not a Dr.  that I have seen that cares. I am 47 yrs. old and I do not believe that ( at the rate my body is changing) I will  Not  see my 50 th Bithday...

Can anyone else relate to thie pain &  suffering of this debilitating disease?

i have taken EVERY POSSIBLE MEASURE and made change to help myself  however it  still isn't enough, my body needs more-requires more...More of what, I dont know... Because "I  look good"  ( by society's rule) I cannot get the correct treatment. I sometimes wonder if I were the drug addict or alcoholic off  the street entering the ER if my help would come?

I survived  many years of physical/emotional abuse and now my fate lies in the hands of this debilitating disease. It is so disheartening.
Replied By: hvnzfire on Dec 2, 2014, 2:34AM - In reply to mckeenoel
I hope you get better soon! A lot of your symptoms sound like mine. I have these because of a tick borne illness. My heart goes out to you!
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