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Jane's Story

Hi, my name is Jane. I was born on October 29, 1958. I was diagnosed with Behcet’s about 5 and a half, years ago. I am now 40 years old.

I am told, my mother, had a normal pregnancy, and I was weaned from the bottle and potty-trained at the age of 8 months.

Some people would say, I had a normal childhood, with a normal upbringing. It all depends on the time of day it is, who you are asking, and what kind of mood they are in. I grew up with a step-sister, a step brother and five other brother’s. Out of eight children, I took third place. It was rough growing up with the boy’s !

My first injury I think was when I cut my right arm, I can still see the scar from this.
About my third grade of school, 1 of my brothers , stuck a rusty fork, into my head, about 1 half inch to an inch from my temple.

The 5th and 6th grade, was to be, my most memorable events of my child life. My Brother-in-law bought me a new bike. I fell off that and cut my right knee. It took about a year for that to heal. To follow shortly after that, 1 of my brothers, hit me in the head with a rock, just a few inches away from my left eye. I had hot boiling water spilled down my right leg, and I’m told they were third degree burns on my right foot. I was hit in the head with a stick of wood, this 1 managed to knock me out.

In my young day’s, we weren’t taken to the doctors, you had your home remedies, or my parents. I did go for my burns, I can’t remember how long it took to heal or what treatment I received. I stayed by myself, as much as I could growing up. We were not allowed friends over, but I did have one, her name is Juanita. My family was raised as Jehovah Witness Religion, I did not feel loved nor did I have a high opinion of my self worth.

When I was 18, I had Suicidal Tendencies, even had it all planned out, I was going to jump out of a tree, to kill myself, but I got counselling, instead. The way I grew up and my Environment, made me feel this way.

I had my Gall Bladder operation.

I met my first husband. He was good to me, I thought. He was an alcoholic, never hurt me physically.
I gave Birth to my first child, when I was 19,( I have two daughters.) we both almost died. I was in a lot of pain, during labour, my water wouldn’t break, and I did not dilate. The doctor induced labour, and had to perform a C-section. This method is how I had both children. I was on vitamins and a white pill for morning sickness, for my first pregnancy.
I also had trouble with a bleeding ulcer. I was 22 years old, when I had my 2nd daughter. This pregnancy was easier.

At the age of 28, I had to have my right arm, operated on. I had a tumour they say. The doctor said it would only take 1 operation to fix it, but in reality, it took 3. The 1rst operation, they scraped the tumour off my bone. It would not heal. The 2nd operation, they took a bone out of my right leg, to replace the bone in my arm, which resulted in infection, and the 3rd operation, was the insertion of an IV Heplock, to give me an anti-biotic for the infection.

My husband was in the military, he went to Turkey, Greece, Italy and a few other countries, prior to our marriage. I met him after he got out, through communication on the C.B.
My first marriage, ended in divorce, my husband sexually abused our daughters. He went to jail, for this, this was my reason for leaving him. “It seems my troubles began!”

The symptom’s of ulcers, mouth and Uvea, started when I was about 32. My neighbour told me a treatment, for this but, it didn’t seem to help.

I married my 2nd husband, at the age of 34.

I continued with getting ulcer reoccurence, approximately 3 times a year. One morning I woke up with a terrible headache, I figured it would go away, but it didn’t, instead it got worse. At the hospital they told me I had the flu. They did a MRI, then sent me home with Tylenol #3 for the headache. I went to the bank with my husband one day, and I tried to sign a check, but I couldn’t even do that, because I could not see. About 4 days later,(I am not sure of the duration of time), I could barely walk, I had to have my youngest daughter help me because she was stronger, than I. My speech was slurred. A friend thought it was a reaction to the Tylenol#3, then we thought it might be MS, we continued to speculate, we didn’t know at this time, what was wrong, I was this way about 4 months, before, I finally went to the doctors.

At first, my husband took me to two different hospitals, but I wouldn’t sit long enough for them to find out what was wrong with me! My step-sister took me to Lewiston, Maine for another MRI, but that didn’t show anything! This is when they decided to admit me into the first hospital, they took a brain sample, as I know it, and I think they did a Spinal Tap. I came very close to dying in there, but I am writing this story, so I couldn’t had died.

They put me on a medication, I do not remember the name, but do remember they gave it to the Inmates for mood swings. They sent me to another hospital. No one could figure out what was wrong. I hated hospitals even more. I kept asking myself,”WHY ME”? “WHAT DID I DO TO EVER DESERVE THIS?” They didn’t have an answer then either!

In the 3rd Hospital, they finally had an answer. I was diagnosed with Behcet’s at the age of 35. I stayed in this hospital for about three months.

I went to yet another hospital for about 3 or 4 months, but this one was even further from my home. They taught me how to feed myself, drink, talk, and walk. At this time I was unable to do anything, for myself, and then I was finally able to go home again. I missed my girls real bad, by then.

When I came home, it was in “1994” I think. I still could not walk or speak clearly. I was dependent on others for my daily living needs. With a lot of different kinds of therapy and help, it took only two years until I was a little less dependent on others. I went from 150 lbs. to 305 lbs. I was on prednisone and Lasix. My balance was off, not due to any inner ear disturbances, my brain just wouldn’t get my feet out of my own way! I was clumsy and always tripping, and for the most part, embarrassed about myself.

I am divorcing husband #2, due to mental abuse. I have lost a lot of weight, not falling like I use to, but that could always change. The medications I am on, are: Colchicine 0.6mg tab, 1 tab Q12 hours, for my disease. Zoloft 100mg QD am, Esgic-plus tab, 1 Q6 hours PRN for the headaches, Elavil 50mg tab QHS, Claritan 1 tab in a.m. everyday and Immodium 2mg cap TID PRN prescribed for loose stools.
My symptoms now, are: Mouth sores and uvea sores, thrice yearly, headaches, sleeping problems, arthritis, depression, loose stools, allergies, balance problems and frustration with this disease.

I have a 2 grandsons, whom, both I have been able to hold. I lost my father last year due to Emphysema. My oldest grandson is almost 3 years old now, he has been diagnosed with Velocardio Facial Syndrome. I am just beginning to learn more about that. His mother,” my daughter” is in counselling at this time and also suffers from depression. My youngest daughter hasn’t decided when she is getting married, but she lives with her boyfriend.

I am nearsighted OD and farsighted OS, and wear glasses. I have three, PCA’s at 8 hours a day. My RN comes in once a month, to check my TPR and Blood Pressure, also to make sure everything is all right with me. Not much is known about this Disease, in these parts, or anywhere else for that matter.

But! I am living on my own, “everyone, said I couldn’t.” I am enjoying it too. I have a cat that lives with me, so I really am not alone!

It is funny; as my writer, goes through spellchecker, the suggestion is to change Behcet’s to Beech’s or Beachnut, even the dictionary, is not sure of this disease.

I hope this story will help someone else or maybe even me!