2016 Year of the Patient: Christie Mehring-Cruz
It was a few days before Thanksgiving1997, when I was babysitting and I collapsed in the bathroom, hitting my head on the sink. My primary care doctor said I should go into the hospital to run tests and make sure everything was alright as I just had a baby boy earlier that year. During my hospital stay they ran several tests, MRI, Blood tests, EKG, to find the cause of my syncope. Then my primary doctor came in and asked about family history as my blood tests results were all over the place. I then explained to him that my biological mother had Lupus, and died of complications when she was 24 years old. So he decided to have the lab follow up on my blood samples to include the ANA test used to determine one of the criteria for diagnosing a person with SLE. At the time of his visit I had the swollen joints, hair loss, skin rashes; all he needed was a positive ANA and Rheumatoid Factor. The day after Thanksgiving 1997, I was diagnosed with SLE.
I became withdrawn in the beginning because I was wondering why me? How does this disease affect your life? Will I have to take medicine all the time? We both didn’t really know much about it. I remember his grandmother sent me information on Lupus from her doctors in Australia. My grandparents knew all too well about the effects of Lupus as they lived and struggled with caring for a child with Lupus.
With the support from my boyfriend we decided to move in together to raise our son. The following year, I became Mrs. Mehring-Cruz wife of Leon Mehring-Cruz. For the next two years, I was always tired no matter how much rest I got during the day. Being outdoors in the sun I would get rashes on my back. The following day I would be tired, and have achy joints. I would always feel hot throughout the day. Plaquenil became the drug of choice and on occasion I would need prednisone to control the pain associated with Lupus. With this comes the insomnia and irritability from the medication. I soon learned I was pregnant again. Once again I miscarried, and then another pregnancy followed leaving me motherless again.
By a miracle I became pregnant with my 5th child who was born on January 17, 2000. We now have a baby girl but it was a long journey to keep this child. I had to stay on the Plaquenil and endured several non- stress tests and ultrasounds to make sure she was developing normally without complications. Once she was born I had a more obligations and not enough energy to get things done most days. We decided to move from Guam to Cedar Rapids, IA in hopes of a brighter future. By this time my step-daughter helped out a lot as she was 12 by the time our youngest child was born. My daughter thought at times her big sister was mommy as I was often too sick to care for the three kids, husband, and myself.
In 2002 -2004 I developed a seizure disorder from the Lupus. Undergoing tests and trying different medications until the doctor found the right one. After a year on anti-seizure medicine I was seizure free. During this time I began to feel very angry and worried as my husband was so overwhelmed with my health issues. We argued at times and I became severely depressed. I cascaded down a deep spiral and my depression got the best of me. I would stop taking my medications when I felt good without doctor’s permission. I wanted to be free of this disease and I hated how my life was starting to change. During the day I cared for the kids and at night I would work as a server to help my husband with the bills. I tried working full- time only to come to the realization that I couldn’t keep a full-time job being tired all the time. After a year of that I decided to go into childcare. It worked out nicely because my youngest could go to work with me and the two older kids were in school. Despite all of the challenges I faced during this period of time I managed to graduate from Kaplan University with a Computer Technician Diploma.
In 2005 I developed ocular migraines; my first one scared me to death as I went blind for a short period of time until the pain subsided. Thankfully during my migraines, I only blacked out for a few seconds at a time no longer than a minute or two. I was then admitted to the Neurology department for further analysis. I spent a week away from my family and it was hard to be away from my kids. Not knowing what was causing my headaches or triggers was the stressful part as I always worried it would happen if I was driving or involved in an activity that could be dangerous to self and others.
Then the disease went dormant until 2007, when I started to develop issues with my digestive tract. The doctors called it Irritable Bowel Disease. I would have bouts of diarrhea and constipation all the time. My potassium levels would fluctuate and I was constantly tired. Muscle cramps and weakness would plague my lower extremities and sleeping would be very difficult. I also developed a vitamin D deficiency. To help with my symptoms, I received steroid injections to bypass the gut. This however causes osteopenia, and another pill called Fosamax was added to help correct the bone density issues I now face from the steroid use. Once I was stable I began to take NSAIDS to help with inflammation to offset the use of the steroids but it didn’t last long as the NSAIDS were causing issues within my intestines once again. I was a smoker so my doctors worried about blood clots and other complications of using NSAIDS for long periods of time.
In 2008 I developed several cysts throughout parts of my body from the thyroid gland, ovaries, kidneys, adrenal glands. My menstrual cycles were so heavy due to fibroids in my uterus I was scheduled for a hysterectomy in 2008. This was another life changing event. I was trying to make the best of my situation but it would become overwhelming at times. The added stress caused added issues with the disease.
I stopped caring about the foods I was eating and the lack of exercise didn’t help either. I gained an excessive amount of weight that was not healthy for me. In 2010 I was diagnosed with malabsorption syndrome; I could not keep anything down. Specialists in Hawaii could not determine the root cause of the malabsorption but attributed it to a side effect or symptom brought on by a lupus flare. I developed several allergies and intolerances to medications due to the malabsorption issues in the digestive tract. The nodules have spread throughout my body and in 2012; I went in for my first mammogram. The surgeon removed my lymph nodes under the arms due to a large growth within them. Good news my cancer screening from the samples sent for pathology came back benign. Recommendation was every year mammogram and ultrasound of breasts every 6 months due to axillary mass and nodules on adrenal glands and lungs. I often had sinus infections or upper respiratory infections probably brought on by smoking. In 2014, I was again dealing with malabsorption issues caused by H.Plyori and bacterial overgrowth within the intestines. I also had and intolerance to natural sugars and fructose. By this time I am no longer able to go to work. I never knew if I would be able to make it to the restroom in time had I needed to go suddenly. Food choices became a trial and error type of thing and sometimes it still is. I was drowsy all the time and light headed. My bones would hurt and the intestines would not digest the steroids properly so I was a complete mess at times. I had to consult with Infectious Disease specialists to determine what antibiotic combination to take to get rid of the bacterial overgrowth as I am intolerant to several antibiotics now and allergic to the two common ones they use to treat the disease.
Before antibiotic treatment I was scheduled to have a CT scan of my abdomen to check up on my pancreas, liver, the technicians noticed nodules in my lungs so I was scheduled for a chest CT. It was confirmed I had a type of lung disease caused from the Lupus, and COPD from smoking. I managed to quit smoking on June 25, 2015.
Along this journey I have had many people judge me, say I need to get a job and help my husband, her disease is fake, and I am lazy, she doesn’t look sick. I know of someone with Lupus and they work and go outdoors. My husband at times would be overwhelmed at times as he was my primary caregiver. I could sometimes feel the resentment; the tension would build up when the finances weren’t in order. I would often go to bed feeling like I was a terrible wife and mother. The one thing everyone who judged me never asked was does it hurt? What types of pain or symptoms do you experience? Has your relationships with family and friends changed since you became diagnosed? To answer those questions I can only speak for myself and tell you that SLE, for me causes daily pain and feelings of depression and anxiety. Lupus can affect the brain and I often have lupus fog, concentration issues, and as I get older I have become overly sensitive to certain situations or life changing events.
If I could go back to work I would do the one thing I love and that is care for children but, since I can’t enjoy the sun or move about without feeling some kind of muscle or joint pain. My husband has family here in Cedar Rapids with young children and whenever I am having a good day I get to spend time with them doing simple things like coloring or reading. This helps me feel like I am making a difference in a life even if it’s not much. I also spend time with my children like going to movies or playing board games. Crocheting was something I once enjoyed but can’t do anymore. For many who suffer from the effects of Lupus, some of us can agree that it does change your life and the lives of your caregiver in one way or another.
One thing I am grateful for is the doctors I have had throughout the 19 years of living with Lupus, not one of them felt I was a hypochondriac or wanted attention. They made me feel like a person not a patient with chart number 01234. To my doctors I am Christie Mehring-Cruz a 41 year old wife and mother who battles lupus daily. You never know what tomorrow is going to hold for you but whether it is a good day or bad day, I am happy to be alive. I am a person living with Lupus, not a Lupus patient.