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Cyndee Miller

My quality of life significantly improved when my husband and I relocated to Arizona from Illinois in 1986. Even though I left my support structure behind, I feel so much better in the dry climate.

I was a computer systems analyst since 1974, and had worked for Arizona State University in Tempe, Arizona for 15 years from 1986-2001 and was an Ombudsperson for 8 years.

On September 13, 1966, the day after my 19th birthday, I was hospitalized at Illinois Masonic Hospital, Chicago, Illinois. I had been waiting patiently at home for two weeks for a call from the hospital to tell me that they finally had a bed for me. During this waiting period, I had a temperature of 104 degrees, became weak, and my joints, especially my hips, began to hurt, making it very painful to walk.

Since I still had a very high temperature, I was placed on an ice mattress and rubbed down with alcohol during the day. Wow..what a feeling to be hot and cold at the same time! I steadily grew weaker, sores developed in my mouth, glands became swollen in my neck, and the I.V. in my arm began to bother me.

Each morning, bright and early, a nurse came in and asked me for a urine specimen. After she left, a lab technician came into the room and drew blood, usually between six and ten vials. Soon the doctors came in to see me. They always had some little game they wanted to play. For example, can you touch your nose with your finger, or can you follow the little light with your eyes? After they left, I was able to rest a little, but not for long! I was aroused by someone saying, "Cyndee, I'm here to take you to ...." I'd think to myself, oh, no, not another test!

As I lay in the hospital bed, I thought of how exciting and challenging life had been for me. I was active in both school and community affairs. In high school I was a member of the Girls' Athletic Association (G.A.A.) Board, serving as Treasurer, Junior year and President, Senior year, Captain of the Girls' Gymnastics Team, a member of the modern dance club (Orchesis), and a member of the National Honors Society. I had received the G.A.A. 225 Point Award by accumulating points and hours of fun-filled sport in bowling, track and field, and gymnastics. Every Saturday at Illinois Masonic Hospital, I volunteered about eight hours of service as a Candy Striper. I was voted in as President of the Candy Stripers, helped write their Constitution and Bylaws and helped train new Candy Stripers. On Tuesdays I went to Jr. Achievement meetings, where I learned different phases of business. In June, 1965 I graduated in the top 14% of my class from Niles Township High School - East Division, and in September, 1965, I began my studies in the pre-medical technology program at the University of Illinois at Chicago Circle (UICC), where I also worked part-time in the University bowling lanes to earn a little spending money and to meet people.

For recreation, I enjoyed many sports. One of my favorite sports was table tennis. Since I was quite a good player, I never had to wait or look for a game because young men would constantly challenge me to a game. I gave them a vigorous and, sometimes, male-ego shattering game. I would run them back and forth from the table, slamming and putting "english" on the ball. At the end of the game, they usually were exhausted, but somehow were able to get up enough strength to put money in a refreshment machine to treat me to a drink. They were really good sports.

I bowled with my family on weekends and bowled during the week between classes. I was able to bowl about four games a day. While maintaining an average of 145, I decided to try for the UICC Women's Bowling Team and made it. We spent many hours practicing for intercollegiate competition. I began to be a well-known figure on the UICC bowling lanes because I had a graceful, yet powerful style. I often had an audience watching me when I practiced. My average increased to 200+ and that was with a 10-pound rubber bowling ball.

When my family wasn't bowling, we were playing tennis. It was great!

Also, I had aspirations of competing on the uneven parallel bars in gymnastics at the 1968 Summer Olympics in Mexico City. Now, I could barely walk across the room.

What lay ahead of me...was I dying?

Every day my mother was at my bedside from early morning until late at night, watching over me and comforting me. One day as she was sponging me off, she noticed a slight rash on my cheeks and went to find the doctors. Immediately the doctors came in and examined me. Soon thereafter, a specialist came and examined me. New medicines, including Prednisone, were given to me, and as a result, my temperature went down and I began to feel better. During this time, I maintained a sense of humor. Back then, stool specimens were collected in round containers similar to Chinese food take-out containers. I put a slit in the top and asked for donations from the doctors every time they wanted to look at my rash. The doctors were very cooperative and played along. I managed to make money while flat on my back.

Since my father, a family physician, had hospital privileges at the hospital, he requested a lunch tray to be delivered to my room so that he could visit with me while he ate. One day I was having difficulty feeding myself. He left the room and came back looking a little weird. I asked the nurses about it later and they told me that he had to go to the Nurse's Lounge to compose himself. Here he was a doctor and couldn't do a thing to help me! Back then, lupus was not known by the general medical community. The specialist they called in could practice all over the world.

On November 13, 1966, I was discharged from the hospital. I was not able to walk very well yet, but I was glad to be going home.

One day I became very anxious and hysterical about my physical condition and limited activity so my father sat me down, opened a medical book before me and told me that I had systemic lupus erythematosus. He explained that this emotional outburst might trigger a relapse. Up until then, I only knew that I had been very ill and was now recuperating. I was so distraught by the prognosis of 10 years life expectancy after initial diagnosis, which I read in the outdated medical book, that I began thinking about locking myself in my room until I died. My father reassured me that, with the new medicines and treatments, SLE, could be controlled and that I could lead a long and "normal" life.

After a few days, I did some serious thinking. I thought it foolish to shut the world out. I thought of the many people less fortunate than I. I was thankful to have both my arms and legs and to have my eyesight and hearing. I began to live each day to its fullest.

In March, 1967, I was allowed to return to college on a part-time basis. I changed my curriculum from pre-medical technology to pre-medical records because I could not take Organic Chemistry due to the chemical involvement of the course. This was the beginning of the redirecting of my interests. I had to learn to slow down and become more involved in passive activities, such as playing card games, playing the piano and guitar, reading and knitting.

I believe the readjustment period was harder on my family than on me. Before my family was quite sports-oriented and enjoyed spending quality time together. Now that I tired very easily and could not be in sunlight, I usually chose to remain at home and amuse myself rather than go with them and be merely a spectator, wishing to take part. At first my family stayed home with me instead of going out. When I finally convinced them that I was happy at home, they started going out again and enjoying themselves.

During the next two years, I was admitted to the hospital four times for neurological problems, mainly headaches and weakening of my arms and legs. I was seen by different neurologists and renal doctors. I underwent spinal taps, electroencephalograms and brain scans. There were always differences of opinions between the neurologists and renal doctors concerning my problems - the neurologists said migraine-related and the renal doctors said lupus-related. Although I had been through many neurological tests and had been pricked by so many needles, nothing conclusive was found. I was even chosen as one of the patients to be presented at one of the Neurology Grand Rounds at Presbyterian-St. Luke's Hospital, Chicago, Illinois. It was quite an experience to be on stage with lights shining down on me in a wheelchair, with an I.V. starting to infiltrate, and having to answer questions bombarded at me from doctors in the audience.

In December, 1969, I was admitted to the hospital to be given an experimental drug, Thiocymetin, for 14 days. At this point, I was willing to try anything to help me feel better. I thought...Here I am world...your favorite guinea pig! The first time I took the capsules, I felt like I was swallowing a time bomb. I anxiously waited for the results of the blood tests taken every day to see if they were normal. I was told that one of the side effects of the medicine was the stopping of blood formation. If this occurred, I would have to come in periodically for blood transfusions. Well, I experienced no ill effects from the medicine. What a relief!

After this treatment, I enjoyed good health for the following year and a half until I suffered another relapse - headache, right arm numb and pressure in the left eye. This time I was given nitrogen mustard (chemotherapy) over a period of three days. I gradually regained my strength and was able to resume normal activities.

During these early years, I learned to be a "patient" patient. I got used to the doctors sticking their heads into my hospital room and saying, "No results yet, see you tomorrow." I learned techniques on how to get through the day, such as imagery, biofeedback, and affirmations. My favorite phrases are: "Strong like bull!" and "I feel terrific!

Up to this point, I had completed the equivalence of three years college work after going to school, on and off, for six years. I submitted my application to finish the fourth year of the medical records program at the University of Illinois Medical Center. Unfortunately, there was room only for 15 full-time students from Urbana, Circle Campus and out-of-state students. Since I had gotten good grades, my counselor advised me to apply anyway as part-time and see if I would be admitted. I was not. Now, where was I to go?

I decided to get a full-time job on-campus as a Clerk-Typist III in the Room Reservations Department for the student union. I really enjoyed working there because I was able to help set up meetings and activities for different student and faculty organizations. It gave me the opportunity to meet many weird (it was the 60's) and wonderful people. I worked there for three years. In May, 1974, I decided to resign from my job and look for "greener pastures" in the computer world. During college, I had taken a computer course as an elective and had found it quite interesting.

Two weeks after I resigned, I began to experience tingling sensations on the left side of my brain and weakness on my right side. I progressively got worse and was admitted to the hospital in June. I underwent more neurological tests, a spinal tap, a brain scan, an EMI scan, and an electroencephalogram. My steroids were increased and then decreased over a period of three months. My condition did not change, though. I was readmitted to the hospital in September for nitrogen mustard again, but this time it was administered over a period of four days. I was super sedated and was "out-of-it" for a few days. I was sent home after the treatment and stayed home until January, 1975, when I was permitted to start taking a COBOL programming class, which met twice a week for two and a half hours a day at Oakton Community College. I was on my way to earning an Associate of Applied Sciences Degree in Data Processing.

From 1974 to 1983, I enjoyed relatively good health. I had a full-time job at a small family-owned chemical company. I had started out as the secretary for the Management Information Services Department (computer department) since I typed over 100+ words per minute, had a chemistry background so I was familiar with terminology, and had taken computer programming languages. However, my supervisor saw potential in me and trained me to become a systems analyst. I was accepted at Roosevelt University to obtain a Bachelor of General Studies Degree in Computer Science. I took one class a semester at night. The company paid for the tuition. However, I was only able to attend five semesters. My system didn't like working full-time and going to school at the same time. My college education had to be put on hold once again.

I didn't want to get married because I didn't want to be a burden to anyone outside of my family. My friends told me that I had so much love to give and that I would be selfish if I didn't give a man a chance to love me. They told me that, if he really loved me, it wouldn't matter if I had lupus. Well, in 1976 at age 29, I met Bob, who was hired as a programmer in my department. When he started showing signs of getting serious, I got scared. I gave him all of the literature that I had on lupus and my father talked to him about what he could expect. However, this didn't discourage him. We were married in May, 1979, and 30 years later, I am very happy that he's still with me!

From 1984 to 1993, I had many flare-ups, five hip surgeries (core decompressions of both hips, total hip replacement of both hips, and revision of my left total hip replacement), three exploratory abdominal laporatomies (one resulting in my gall bladder being removed), and a total hysterectomy. From March 1984 through March 1985, I was in the hospital 265 days out of 365 days! During this time, I was given Cytoxan (chemotherapy) to help arrest the lupus activity. I lost my waist long, black hair. I was devastated! Also, my Prednisone (steroid) dosage was increased. End result...I was a bald, fat, short person, who didn't want anyone to see me, even my closest friends. My self-image was very poor. However, I let myself grieve over this loss and regained my positive mental attitude.

After my right hip replacement in December, 1985, Bob and I considered moving to a drier climate for my health before the winter of 1986. My arthritic pains were really taking their toll on me. Also, Bob didn't want me to fall down due to the snow and ice and hurt my hips.

I was apprehensive about moving, though. I had grown up in Michigan and Illinois. I was used to the cold and damp weather. When I was diagnosed with lupus, I thought the way that I felt was just the way I had to feel for the rest of my life. Bob wanted to move to Arizona. I was terrified. Through the years I had been told by the doctors to stay out of the sun. Now, my husband was asking me to move to the Valley of the Sun! I consulted my lupus doctor (I had been with him for 18 years; he was like my big brother) and he told me that he thought it was a good idea for me to move. He said that I would do as other Arizonans...stay indoors during the day and use sun screen when outside. He found out for me that there was a lupus chapter in Phoenix. So, I felt a little bit better about moving. However, I would be leaving my family, my support structure, behind.

Bob, Corey (my beloved teddy bear) and I moved to Arizona in September, 1986. After two months, my arthritic pains were gone! When I lived in Illinois, if I went to the shopping mall, I had to sit down every 15 minutes to rest because I hurt and was tired. In Arizona I can walk for a long time. The first time my parents visited, they couldn't believe that I was the same person. I was so energetic and wanted to show them around. Our decision to move was the best decision we have ever made!

In 1991 I contacted Roosevelt University and made arrangements to finish my degree via correspondence courses. I only had four core courses and the senior thesis to finish. However, I was able to complete only the first two modules of the first core course before my lupus started to act up again.

From 1994 to 1995, I was healthy and found a new hobby, archival (acid-free) scrapbooking and rubber stamping. I met new friends going to workshops. I also renewed my interest in putting jigsaw puzzles together. These activities were good for my manual dexterity. During the early years, my doctors had told my mother to make sure that I used my hands so that I wouldn't get arthritis in them. So, I was always playing the piano, knitting, putting jigsaw puzzles together, or doing counted cross-stitch.

Unfortunately, on May 15, 1996, I suffered a small brainstem stroke while at work. The mild right side weakness only lasted for a few days. However, for four months, I had a whopper of a headache, extreme pain on the left side of my head, extreme vertigo, and a slight form of dyslexia. The stroke had caused a decrease of blood flow to my left inner ear, resulting in it functioning only 38% capacity. I worked with a speech therapist for five months for the dyslexia and general mental exercises. I'm glad to say that I suffered no permanent disabilities!

I returned to work mid-October, 1996, with the understanding that I was to take time-outs in the morning and afternoon and take my full lunch hour without work in front of me. I am a Type A person and am always doing something and enjoying it! The possibility of having a recurrent stroke within one year is very high so I have to try harder on taking my timeouts.

While recovering from the stroke, I asked myself, "What is my mission in life?" Why was I having to endure and survive all of the physical and mental challenges of lupus? My mission became clear to me when I returned to my full-time job. Within three weeks, two people told me that they were recently diagnosed with lupus and three people told me that they had a friend or relative recently diagnosed with lupus. They wanted to know if I could help them and provide them with information about the disease.

All these years, I have been very fortunate to have the most understanding and compassionate bosses. My job has always been secure. Knowing this has really helped when I was out sick...one less thing to worry about! The knowledge that I have today is the result of my college education, on-the-job-training, technical workshops, and support from my bosses.

Well, it has alot to do with how I was brought up. My father had drilled into his children that we could do anything if we put our mind to it. He established a positive mental attitude environment at home. My mother was my caregiver and gave me emotional support. She made many trips to the doctor (waiting for hours sometimes) and trips to the Social Security Office (guaranteed to wait hours) with me. Often I was in a wheelchair so she had to deal with loading and unloading it from the car. To this day, she still tells me, "This too shall pass." She always knows when I am hurting, even though I don't say anything. She just helps me without saying a word.

My faith in God, the prayers, love, understanding, encouragement, and support from my husband, parents, siblings, friends, and coworkers, and silent comfort from my 59 teddy bears, have given me the strength to endure all.

In addition, Judy, my best friend since high school, has always been there for me. We have spent many hours together - talking, laughing, and crying. Even though we live 3,000 miles apart, she is only a phone call away. There have been numerous times that she has made personal sacrifices to be by my side during difficult times. Also, I must thank Judy's family for allowing her to do so.

I'm looking forward to another 30 years! With a positive attitude, I can accomplish anything! God willing, I hope I will continue to be an inspiration to other lupus patients by my living example.

I started the first three months of 1997 with a sinusitis/upper respiratory infection that took five antibiotic treatments [Amoxicillin, Cefaclor, Cipro, and Biaxin (2x)], decongestants, nasal sprays, short-term steroid treatment in addition to my regular daily 1.5 mg of Decadron, and steam to get rid of it.

On March 13th, I suffered another stroke! Thank goodness I didn't get vertigo this time. I had a severe headache, nausea, trouble concentrating, slow speech, dizziness, weakness in my right arm and leg, and head and right arm tremors. I stayed home for a week since I was tired and my legs were very weak. Good news again...there was no permanent damage. The neurologist wasn't sure if the strokes are related to my early years when I had central nervous system involvement. I'm supposed to continue taking Calan SR (reduces stroke-like events and vasospasms) and Ecotrin 325 mg (aspirin). I had to stop Ticlid because I was getting fist-size bruises without hitting anything! My lupus doctor said that my sed rate was elevated, RNP was positive (can't correlate it with CNS involvement), and my complements were normal. He couldn't really say if I was having a mild lupus flare or not. When I asked both doctors, "Why are my legs weak?", they both responded: "It might be from the stroke and/or the lupus." Same old response!

At the end of April I finally admitted that I needed progressive glasses...my arms just weren't long enough anymore. I had been in major denial for three years.

Since July, my orthopedic doctor had been trying to determine what to do about pain in my right subtalar joint in my ankle. We tried three cortisone shots which had no effect. For six weeks, I tried resting my ankle by using crutches with minimal weight bearing and heat each day. If nothing alleviated the pain and swelling, I might have faced arthroscopic surgery. Good news! My ankle got better. However, now I have to wear orthodics for support.

Daily affirmation...I'll keep on going...just like the little pink bunny!

Well, I've reached the first stage of senior citizen status... I turned 50!

Where did 1998 go to? Each year seems to be flying by. I started the year with the stomach flu. I lost 12 pounds in less than 5 weeks. I had continuous abdominal pain so I had a CT scan of my abdomen. A general surgeon didn't see anything conclusive to warrant surgery. However, he hospitalized me so that tests could be done quickly and the doctors would have to come to me instead of me getting referrals, setting up appointments, going for tests, going back to the specialists, etc.

I was given an IV to keep me hydrated since I was eating only 500 calories a day and then was put on NPO for a colonoscopy, esophogastroduodenoscopy, and small bowl follow through. I also had blood tests (including amylase and lipase) and urine tests (including amylase and porphyrin (test for porphyria metabolic disorder)).

During this time, my rheumatologist told me that there was no indication that my lupus was active. He told me that maybe my abdominal pain would go away as mysteriously as it came. At least I had pain medication to take at night to help me sleep.

I'm glad that my tests showed that I didn't have cancer, no ulcer, no bleeding, no diverticula, no irritable bowel syndrome, no colitis, no parasites, no c.difficle antibody toxins, no problem with my thyroid, no nothing!! But, I was SO unhappy that I had to play the wait and see game once more.

Well, my rheumatologist was right. In October my abdominal pain disappeared! I'm was a happy camper once again.

Other than the abdominal pain, I felt great all year. However, I had to have a heart-to-heart talk to myself to slow myself down because I was getting stressed out at work. I discovered line dancing, which I do on Wednesdays and Thursdays. It's great fun and an excellent stress-buster!

I felt very well, except for an unexplained numbness and swelling of my left leg which lasted a few weeks and then went away as mysteriously as it came. My annual bone density scan showed that it has increased since last year! I thought as you got older it decreases. My Rheumatologist was very pleased and told me to keep up what I'd been doing. The only thing different in my life since my last bone density scan was line dancing. I am now dancing 4 hours on Wednesdays, 2 hours on Thursdays, and 2 hours on Sundays. An article, "Outdistancing Osteoporosis" in the Healthy Living section of The Arizona Republic newspaper on Thursday, October 21, 1999, listed dancing as one of the weight-bearing exercises that put stress on the bones to help preserve bone mass. So, I'm going to keep on dancing into the 21st century!

This year was a year to test my patience. In the Spring, due to unknown cause, my left leg, ankle and foot became swollen. After a few weeks my leg and ankle were no longer swollen, however, my left foot required 3 cortisone shots before the swelling subsided. In the Fall I started having pain in my neck with pain traveling along my left shoulder and down my left arm to my hand. An MRI showed narrowing between the C6-C7 cervical spine in my neck. The C7 nerve root goes down the left arm. The nerve might be irritated by this narrowing or by lupus. An epidural anesthesiologist gave me 13 trigger point injections in my upper left back and shoulder and 3 epidural steroid injections between C6-C7. These did not help at all. I also had 21 physical therapy sessions with exercises to stretch and strengthen my neck, back, shoulder and arms, electrical stimulation to block the pain signal, and ultrasound with moist heat to promote blood circulation in my upper back. I was on very strong pain medication, which might have affected my stomach so my family doctor started slowing decreasing it. Since there isn't clear evidence what is causing the pain, the neurosurgeon does not recommend surgery at this time. Meanwhile the pain is constant. So, I decided to enter the world of Oriental Medicine and acupuncture to see if it can help manage the pain.

Unfortunately, the acupuncture did not help the pain or stomach problems. I lost 40 pounds since November 2000. I became extremely dehydrated since I couldn't eat or drink anything because it hurt my stomach...couldn't even make saliva. In January 2001 I was hospitalized for 2 weeks and was given fluids and electrolytes through an IV. I had an EGD (esophogastroduodenoscopy) and a CT scan of my abdomen and pelvis - both were normal. The doctors put me on medications to sedate and relax me. However, the stomach and abdominal pain persisted and my liver enzymes were very high. In February I had a spiral CT scan of my pancreas (was normal) and in March I had an ERCP (Endoscopic retrograde cholangio pancreatogram) where the surgeon removed small sandlike stones from the common bile duct and cut scar tissue (papillary stenosis) at the opening of the duct.

During this time, all of my joints hurt...my lupus was active even though my blood work was normal. So, my Rheumatologist increased my steroids slightly for 9 weeks until my symptoms subsided.

My neck pain finally went away in April after months of physical therapy, bed rest and medication and was able to return to work in my office in mid-April.

In July I had my 8-month checkup with my Orthopedist. X-rays of both hip replacements showed deterioration of the polyethylene. The left one was serious enough to warrant immediate replacement. So, I was scheduled for surgery.

Since August 2001, I have had many medical challenges which have tested Bob and my strength and faith. After surgery to replace the failed left hip prosthesis, I had 3 hip dislocations while in the hospital and had another surgery to put in a larger cup in the socket. Shortly after, I developed a life-threatening staph infection (MRSA) and underwent another surgery to completely remove the new hip prosthesis and infected soft tissue, leaving me without a hip! (Curiously, my stomach problem disappeared after the first hip surgery...miracles do happen.)

This was the beginning of a very trying time for us. In summary I also had emergency abdominal surgery, was in traction for a month to set a fractured fragile left femur, wore a custom-made leg fracture brace from groin to tip of toes (wore for 10 months) and sent to a rehabilitation facility for intensive physical and occupational therapy for two weeks, was on a respirator in ICU for 3 days due to respiratory failure after an allergic reaction to fumes after the installation of a new heat pump for the house, and finally in June 2003 surgery to put in a new hip prosthesis 22 months after first hip surgery.

I have been bedridden since August 2001 and have to depend on Bob and my mother to take care of me. The only time I go out is to go to a monthly doctor appointment.

Although I can no longer work, my spirits are high and I spend my day watching TIVOed satellite TV shows to keep up on current events and entertainment and putting jigsaw puzzles together I'm definitely missing line dancing, which is unfortunately a thing of the past.

I am so blessed with a loving husband, family and friends to help me through this very challenging time. I continue to keep my faith and know that God has a plan for me, and a reason for me going through this.

While looking at our "children" (59 teddy bears) during the 2004 Christmas season, Bob and I decided to donate 39 of them to the Sunshine Acres Children's Home so that needy children could have something to cuddle up with. We miss them, but we know that they are being loved.

I can't believe it's been 40 years since my diagnosis, especially since the early medical books stated that life expectancy after diagnosis was 10 years.I am truly blessed!

The doctor told me to be patient for the muscles and ligaments in the left leg to be retrained after being without a hip for 22 months. As I relax, I think about what I have endured and what I may do in the future to help lupus patients. I have found two more things to enjoy: "Tangoes" (arrange 7 geometric shapes to match picture on a card), "Sudoku" and "Kakuro"(current logic puzzle crazes). I can't do these, though, for very long because I get very tired and lose my concentration.

A medical uneventful year is a "good year"! I turned 60 and am now taking advantage of Senior rates at the movies. I got a kick out of showing my ID to prove my age. I also retired on August 1st. I started scanning old photos (restore, resize, document) since my childhood so I can put them on DVDs. I continue to carry a Sudoku book and pencil with me wherever I go.

Since I hadn't walked normally since 2001 due to the 4 hip surgeries and recovery, I had been sedentary for 8 years. I decided to start walking in the mall with Bob. As usual I pushed myself too far again! I increased the walking distance each day for 3 days straight. The result: Pain in my right ankle and left foot. I was put under the care of a podiatrist for overuse tendonitis of my right Achilles tendon, plantar fascitis and posterior tibialis inflammation on my right foot/ankle. I also had plantar fascitis of my left foot and the metatarsals were irritated due to compensating for the left leg being 1/2 inch shorter than the right leg. I have physical therapy two times a week for rehab, strengthening and gait training. When all of the pain is gone, he will give me a walking routine. Until then, no mall walking for me. He also put 1/4 inch heel lifts in my shoes to take the strain off the Achilles tendon. Other than this mandatory rest period for me - life is great!

I had a severe nose bleed on April 23rd. I expelled 2 large blood clots and my husband and I couldn’t stop the pouring blood so Bob called 911. While in the ambulance, blood started flowing out of my eyes. I was a person of interest in the ER because none of the staff had seen this before.

The ER doctor packed her left nostril and the bleeding stopped after 2-1/2 hours. It was difficult to stop the bleeding since I take an aspirin a day after my stroke in 1994. My body’s ability to clot was affected by the aspirin, garlic and fish oil (all blood thinners) that I take daily. My immune system was really compromised and left me very weak. I was discharged after 6 hours. When we returned home, Bob cleaned up the bathroom. There was 2 inches of blood in the sink!

For 4 days I had to sleep with my head elevated at 45 degrees and was sedated so the stress wouldn’t cause my lupus to flare.

On April 27th our ENT removed the packing and the left nasal passage looked good. I couldn’t blow my nose and had to open my mouth when she sneezed.

We, think, when the ENT doctor scoped me on April 15th to check my vocal chords (I had been coughing since December), he might have broken a capillary in my nose, causing a slow bleed which would explain the color and size of the clots (looked like chicken livers) she expelled.

It took me 3 months for the nasal tissue to heal and get back to normal.

If you want to see how I looked with blood flowing from my eyes, click here.

Bob continues to be my rock!

Cyndee's Left Hip and Pelvis History Photos

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Copyright © 1997-2009 Cyndee Miller
Page Last Updated: Sunday, November 1, 2009