MY NAME IS LULU

by

Vicki Palermo

 

My problems started in my junior year of high school with severe cramping and diarrhea. I barely made it through my senior year and graduation. I became so thin and weak trying to work, date and do everything an 18 year old does. Finally I was diagnosed with Crohn’s disease and ulcerative colitis. Alzulfadine didn’t help. I was then given Prednisone, which 21 years later I am still on.

Following years of pain and not being able to get any relief I went to Mayo Clinic. I was tested and told an ileostomy was my only chance for relief. By this time every part of the large intestine and rectum was involved in the disease. Surgery to remove both was recommended. I returned to Chicago to be with family and friends and ask their help in making that decision. I held a great job but the disease was taking its toll. I spoke to an ET nurse, a surgeon and a young woman who had the surgery. Then I decided to have the surgery but in Chicago.

The surgery was in 1988, two days following my 27th birthday. I though everything would be fine and the need to wear a pouch seemed like a small price to pay for freedom from pain and to,once again, be able to be out and about without the worry of where the nearest restroom was. Unfortunately the hoped for relief did not last long. Something had gone terribly wrong and I repeatedly found myself in the hospital emergency room. My stoma was not doing its job and everything I ate was vomited up. My gastro doctor, who I had faith in for so long, told me it was all in my head and he felt I had just given up. I believed then and still do if you are not getting results with your current treatment, run, don’t walk , in your search to find someone better qualified. My doctor also felt my mother was overly distraught and suggested I go home with my aunt, a nusing aide at that hospital. But that night my aunt and uncle rushed me to the hospital where I had emergency surgery on a perforated intestine. I was very near death. From that operation I began a six month downhill spiral, that lasted from November 1988 to Mother’s Day, May 1989.

The intestinal poison spread throughout my entire system. My breathing was extremely labored,causing my lungs to collapse. I was placed on a respirator with tubes inserted into my chest. A few days later I was intubated and put into an induced coma. The massive infection had gone into Adult Respiratory Failure. I received 100 percent oxygen, which I could not be weaned from. My parents were told that in all probability I would not survive. In the wee hours of January 3, 1989 my mother was summoned to the hospital and there in the intensive care room, I was given last rites. Then, although not expected to survive, I was put into a deeper coma.

Slowly I was weaned off the oxygen and the day came when I was to be brought out of the coma. My eyes opened but I did not respond. My mom noticed I would flip the monitor off my left hand but not the right. She mentioned to a nurse that I was taking a long time to come around. The nurse confided I should have responded by then. A scared, nagging feeling came over my mom who began to wonder “Where are all the doctors who had been hovering around? Why isn’t anyone telling me anything?”

Recognizing certain signs, mom mentioned to Gram that perhaps I had a stroke in January when so much had gone wrong. She wanted answers. A large entourage took me for a MRI. My mom’s worst fears were confirmed. I had a stroke and it had damage my brain affecting my right side and eyesight. I could no longer speak. With further study the doctors concluded a blood clot shot through an opening in my heart, when my heart became crushed by the Adult Respiatory Failure. The ileostomy was no longer the major problem. I had the aftermath of a stroke to contend with.

Since that time I have had years of physical and speech therapy, which continues to this day 21 years later. Seven months after the original surgery, in May of 19891 began daily therapy at New Medico in Chicago. It was difficult struggling to regain what I could of my former self. With little use of my right side, arm and leg, limited eye sight and an inability to speak coherently, life was overwhelming. I fought hard and received a lot of love and assistance. I still have Aphasia. Sometimes it is hard to communicate my thoughts, but the difference between then and now is like night and day. 

Perhaps you wonder about the title of my story, especially since you now know my name is Vicki and not Lulu. My dad would visit and try to get me to talk. He had and still does have a great sense of humor and coached me to say “My name is Vicki and I am a creep.” What came out of my mouth was, “My name is Lulu and I need money.” With Aphasia often what is clear in the mind is not what comes out of the mouth. I repeated that sentence over for days. This exchange has for years brought smiles and laughter to an otherwise tragic situation.

My past work history included jobs at the Tribune, Browns Chicken, McDades, a financial advisor at John Amico Beauty School, travel agent, one of my favorite jobs, a Mary Kay consultant, and a secretary at the Daley Center in downtown Chicago. I loved all my jobs but I was medically retired.

We relocated to Highlands Ranch,Colorado in 2005 but I keep in touch with friends in Chicago, including those from the North Side Support Group of the UOAA and folks at the Rehabilitation Institute. I attend the conferences as often as possible. It is great to see familiar faces and recive updates on health issues. I am attending the New Orleans conference and am hoping the next one is still going to be in Denver. 

Today the Crohn’s is under control. My vision has improved somewhat. I wear a brace on my right leg, I can move my right arm, but the right hand will not cooperate. Fate has placed before me many challenges but I try to keep a good attitude. I can walk trails and swim like a fish. I am in Golf 4 Fun with others challenged by disabilities. I am taking tennis lessons and I bowl. I take art classes and one of my works sold at silent auction for over $500.00.1 am writing my memoirs. I spent a week end at Easter Seals camp recently and was able to get on a horse again. Something I have missed. I am looking into some riding programs and hope to get into one this year. Beyond family and friends my support group has been through the Rocky Mountain Stroke Association where I take skill classes in addition to occupational and physical therapies. I also attend the YESS support group there, which means Young, Enthusiastic, Stroke Survivors.

I have had other health issues over the years – a hysterectomy, sinus surgery, a broken shoulder from a fall down the steps at our pool in our complex. Panic attacks are no fun, but fortunately they are few and far between. A case of Pyaderma around my stoma caused a lot of pain and made it impossible to keep a pouch system in place. After medical attempts failed I found a group who I’ll call the “Irish People who work on the aura surrounding your body. Believe it or not, after 2 sessions, the Pyaderma was healing. I did confess to my doctor, he said he didn’t care how it was healed just that it was. I was please to learn he was open to alternative medicine.

It has taken years following the ileostomy surgery to get the Crohn’s under control. But now it is. The move to Colorado seems to have been good for me. Although I missed my Chicago doctor who knew my case so well, I have a doctor here who has been great. My doctors just met recently at a conference and discussed how well I am doing.

With the Crohn’s under control I am concentrating more fully on correcting the disabilities caused by the stroke. People at the support group I attend are consistently inspiring. I have been told I inspire others, which is always good to hear. I am again dating. In 2008 my friend and I traveled to Santa Fe, New Mexico, and this year to the Grand Canyon, stopping along the way in Sedona, Durango, and Moab.

My family is close by. I share a house with my mom. My dad lives about 3 miles away. My brother, his wife and 3 sons live about 7 miles away. The rest of the family is still in the Chicago area, and I try to get back to visit them and my friends at least once a year.

As too many of us have experienced life is not easy. I do the best I can every day. My motto has become “FIGHT TO THE FINISH”

 

…… So now you know that “Lulu” is Vicki Palermo.

Her story is compelling in that it represents one person to accept responsibility. For what?  you may ask. For her condition and her happiness. It would have been very easy for Vicki to have given up. But she never did. Vicki could have become, very easily and understandably, a bitter young woman who blamed others for her disability and wallowed in the mire and muck of being unable to walk, talk and live like she had as a younger person. But she didn’t.

With thousands of  hours of therapy, incalculable gallons of sweat, and a mountain of determination, Vicki accepted responsibility for making her life a happier place. And she did it! Now her life is certainly different than your or mine, but Vicki is a happy happy person. If you are lucky enough to know Vicki, you will agree that Vicki never blames or complains. She decided, on her own, to recognize her condition and to accept responsibility for changing. In her own words, she has written about where she was,  where she is now, and where she wants to be.

Vicki, as you know has very little use of her right side, has limited vision, and difficulty communicating. (Yes, talking to Vicki is “different.”  But I enjoy it so much. For those who know the challenge of “aphasia ” you will understand.) Vicki was not content to walk again — she wanted to swim, to hike trails, to bow, to golf, to ride a horse – so she learned to do all of those things. She paints, she travels,she is writing her memoirs,  and she teaches.

Teaches? You are thinking I don’t remember that in her story.  But, yes, her story “teaches” by  inspiring other stroke victims, and all of us. She is a stellar exmple, to people all over, of the power of accepting responsibility for our situation and having the determination to make one’ s own happiness.