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Ernests' Story

Still a sensitive subject to talk about

My name is Ernest Waite and my last story was told in September 2001 (see below) and the not so funny thing is that, I am still in pain but there are times that I get out and do family things.

I do know that the reason that I can get out, it is due to the team of doctors that had implanted a morphine pump inside my abdomen, without the pump I wouldn’t be able to withstand the pain. The other medicine for terrible burning and hurting inside my mouth and on my tongue is called “Lidocaine HCL 2% Viscous Liquid” and it really works for approx. 20-30 minutes.

When I had first contracted the disease I was put on prednisone as I think everyone of us has. About February In 2002 I had received a call from my doctor in the Dermatology department and the doctor had made an appointment for me to take a “Bone Density Test “. I had gotten a little nervous at that time, and then the doctor had explained that because of being on prednisone for as long as I have been that I have developed “Osteoporosis”. The Osteoporosis is deteriorating of your bones, and on me it’s my spine bone and both my hips.

From the time I first developed Behcet’s I have met so many people that their lives have been put on hold because nobody out there can really cure this monster and it does attack everyone differently. Some people it may take years to diagnose. When I had attended the convention in Boston I have had the chance to with quite a few people, some real young and some a few years older.

The one thing that was really heartbreaking was the woman that have gotten divorces because of this nasty Disease. I thank GOD everyday for the wife I married 22 years ago, And if I have learned not one more thing I do know that when your wife or husband has put up with there spouse having Behcet’s then that means but one thing “LOVE”. I do know that everyone who has Behcet’s that there are people praying for all of us. My really main problem is that the head of my penis has all the nerve endings destroyed and there is no rejuvenating of these nerve endings.

There are about four months out of the year that I have no lesions or blisters. I still try to keep smiling because the real truth is that nobody out there really gives a s--- maybe only your family and other Behcet’s sufferers care. Before I end Please have a Bone Density Test if you or anyone you know have been taking prednisone.

I’m praying for each and everyone of “US”

Good health to everyone

Ernest A. Waite

I would like to start off on May 19th when I was first admitted to the V.A. hospital.

 It was just before noon that my wife and daughter had rushed me to the emergency room, I had about fifty blisters covering my tongue and cheeks.  While I was waiting to be taken to my room there must have been about five doctors who have been trying to guess what I had.  Dr. Semler who happens to be a dermatologist had mentioned Behcets but the infectious disease doctor came up with SJS (stevens johnson syndrome ). 

For the next three weeks I was treated for SJS, until the disease decided to keep going with no remission for the past sixteen months to present.  I have burnt nerve endings inside my whole mouth including my tongue and my penis.  This burning I’m talking about is like having a torch coming up from my throat. Also my penis feels like its on fire all the time.  Five hours after being taken to a private room my penis had turned all black and the skin was just burned off. There were doctors that came to see me and wanted to take pictures of my mouth and penis.

For about the first three days my eye’s had mucus coming out of them both and they would swell up and turn red after the third or forth day my eyes were all right. I had lost eighteen pounds in three weeks.  It was twenty days and I was released from the V.A. hospital with pain medicine to keep the terrible burning under control.  And I mean to tell you that every day is different, the only thing that stays the same if this terrible burning, constantly with no hopes in sight. 

I am seeing about six different doctors all of which I think very highly of, along with the nurses who have been very helpful. Nurse Brand has been so helpful to my wife and me, and she is also in pain management, and I would like to say a special thanks to Fran.  I have been having a hard time dealing with this nasty disease.  The doctors at the V.A. hospital and the Cleveland Clinic have told me that they have no way of healing burned nerve endings, and I may never have sex again.  I am also seeing a psychologist to help me deal with this ugly disease because there have been many nights that I have stayed awake crying not knowing what the future holds.

For my family and me, this hasn’t been an easy task.  I haven’t had any energy at all; I get so out of breath walking to the corner store, which is only about a quarter mile away. The really sad thing is my six year old will ask me to play and I just can’t do it. But I do play board games whenever he wants to.  I have an implanted morphine pump inside my stomach with the leads going to my spine to take the burning away from my penis, if not for that pump I would be insane.  I also breakout with lesions all over the front of my legs and all over my stomach about every two to three months, the lesions that come are red with pus in the middle.  I have been on and off with prednisone to fight the symptoms but I have a feeling that this disease is forever…

I am having a really hard time trying to deal with it, just knowing that it will never go away.  I really would like to thank all my family and friends with all the support and prayers that they have been saying.  And a special thanks to my loving wife Pam who has the hardest job of all, that is taking care of my two boy’s and me and making sure that she goes to all my doctors appointments with me.

There have been so many lonely nights when all I could do is to watch my wife sleep and wish I could just hold her. I’ve been having a hard time sleeping.  Well Thanks Again Alex for all your concern and I am really looking forward to meeting everybody.  May God Bless all the Behcet Sufferers!!!!

I pray for each and every one of us, because no matter how many doctors say it’s in our head, we are the only ones that know what kind of pain this nasty disease can DELIVER.

Also A “Thank You” to all the Doctors that have been with me from day one to present, and have seen the pain that I’ve been going through. I want to thank The V.A. Hospital in Cleveland, Ohio and their staff for taking extremely good care of me, along with the V.A. administration in downtown Cleveland, Ohio.          

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