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Hi. My name is Kristi and I was asked to tell you about me. I work for an association that helps our nation's handicapped military veterans and have since 2015. Before that, I worked for the Christopher & Dana Reeve Foundation. I have one of the most rewarding, humbling jobs in the world. I love helping our nation’s Veterans and their families.
I have lived with Lupus for over 30 years and have been paralyzed for 25 years. I am a fighter. Medically speaking – I should not be here. I have a hard time talking about myself, and well, I have an extensive medical history so this could get quite long. The last thing I want to do is bore you. With that said…here we go. 😊
I was a healthy kid until the age of 10 when I was diagnosed with Lupus in the summer of 1989. Lupus is a long-term autoimmune disease in which the body's immune system becomes hyperactive and attacks normal, healthy tissue. This is an adult disease and rare that a child as young as me would be diagnosed with it. It immediately attacked my kidneys and when I was 12 I was sent to the Mayo Clinic where it was thought I might need a kidney transplant. I was put on chemo and high doses of steroids and they were able to turn my kidneys around and to this day I have not had a kidney problem.
When I was 14 I had a spontaneous lung collapse. Did nothing to cause it – it just happened.
I was paralyzed on March 7, 1995, when I was 15 from a Lupus flare (relapse) from a grand mal seizure. My parents were at work and my school did not report me missing. I lapsed into a coma for four days and was not supposed to live through that first night, but I pulled through. I was diagnosed with Transverse Myelitis (TM). TM is an inflammation of both sides of one section of the spinal cord. It is extremely rare. I was originally paralyzed from the neck down, but as I came out of the coma my arms and hands came back with full function. I spent three months in inpatient rehab and the next three months in outpatient rehab and with the help of tutors, I passed my freshman year in the hospital and was there for the first day of my sophomore year.
Shortly after I turned 21 the Lupus flared and entered my red blood count. I had to get my hemoglobin checked daily to make sure I was not dropping below 8.0 because if I did I would have to get a blood transfusion. My Rheumatologists was having a hard time figuring out the hemoglobin issues so he consulted with an oncologist. I was tested for cancer by having my bone marrow tested. I was so sick and very weak. I had numerous blood transfusions to the point the oncologist came into my hospital room one day and said you need to get better – I do not want you to become immune to blood transfusions. I never do things easily or by the book and often times have doctors scratching their heads.
I got pressure sore on my tailbone in 2002 and a botched flap surgery kept me in bed for 17 months and on a wound vac for the majority of it. The doctor also insisted the wound was not infected, but I ended up with osteomyelitis which is a bone infection. I was on IV antibiotics for nine months before I was to have another flap surgery. After firing the first surgeon I ended up with a great one what kind and patient.
On March 7, 2003, I had another Lupus related seizure - eight years to the day of my first seizure. What are the odds? Not my best day. Not my favorite day. My mom was home with me that day so I did not lose consciousness however, I got simple questions wrong and could not recognize people. I am happy to report I have been seizure-free since.
My Lupus has been in remission since December 2003 and other than breaking my right leg three different times I for the most part, did not have too many health issues. My feet gave me a scare the summer of 2018 – there were talks of amputating both if we could not get the pressure sores under control. I have battled sores on my feet since getting paralyzed, however nothing that was so serious where amputation was a consideration. After trying everything under the sun medically – a $10 bottle of betadine helped heal them.
My health took a major turn for the worse in November 2018 and I thought I was going to die. I went undiagnosed for months and no one could figure it out. A full body cat scan was ordered and it showed I had bilateral pleural effusions and my lungs were 90% full of fluid. I had what is called a thoracentesis and had my left lung drained. The right lung had gone back to normal. The next day I experienced pain and was told to go to the ER where I got admitted. From November to February I experienced constant pleural effusions in my left lung and my right lung had pneumonia. I also could not keep food down, I had Influenza A, my first rapid response, and my hemoglobin dropped down to 6.2 which lead to two units of blood. I had numerous hospital stays and a couple of trips to the ICU and no one could figure out why these things were not improving. I was on IV antibiotics that made me feel sicker than I already was and then…my hands and arms went numb and I lost function in my hands and arms. I begged them not to discharge me, but they did.
I emailed my Lupus doctor the next day (Friday) about what was going on with my hands and he asked if I could see him on Monday and I said yes. Within 10 minutes of that appointment, he kicked us out of the office and said go to the ER with no explanation. I was admitted again and I found out (months later) that under his strong urging that I get an MRI. That night I had an MRI and the next day a neurosurgeon was talking to me. He said a lot of big words, but all I heard was I was very sick, my spine and back had split in half and I had also lost some vertebrae from infection and that was the cause of the hand function loss. He said it was not an emergency, but it was urgent that I pick a hospital to do the surgery as there was not a team big enough in Sioux Falls to do it. It took everything in my power not to cry, but I held it together. I ended up at the University of Minnesota.
I have gained most of my hand function back, but they are still numb and probably will be for the rest of my life. It is called neuropathy. I take nerve medication for it and some days are better than others. I had OT when I came home from Minneapolis. I do not write like a three-year-old anymore and I would say most of the function is back. My back is in chronic pain from all the metal, but there is some light at the end of the tunnel I’ve been approved for a pain stimulator, but due to Covid19 that surgery has been postponed.
I missed six months of work and went back part-time in June 2019. What a joy it was to be back. And everyone from coworkers, Regional office employees, and my Veterans let me know I was extremely missed. And I missed all of them. My boss caught me up as much as he could and I was eager to see our Veterans again. I was able to go back full time in November 2019. I currently healing yet another broken femur but should be back to work full time from home once Human Resource goes through my FMLA paperwork. To say PVA has been great through my health issues is an understatement. I am lucky to be where I am at today.
As you can see I have not been dealt the best of hands, but I am not done playing with these cards yet. If you are keeping track, my body is mostly metal. I am turning into the bionic woman. There is a reason I am still here.
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