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I had been talking to a my friend, the same one I mentioned earlier, about how my mom was feeling. She told me that she was participating in a Lupus Loop with some people from her work that upcoming weekend. So...I did some research and learned that it was a 5K and all the proceeds would be donated to Lupus research. I knew my mom and I had to go! I was looking forward to doing something positive for Lupus, because up until this point I felt a lot of anger towards the situation. I think because I was helpless, there was nothing I could do to change my mom's diagnosis. I can't fix her, and that makes me mad. We registered for the walk online. I was beyond thrilled! I felt like maybe I was making a difference. I believe a few people even donated to us! We were pumped for walk day! When the day finally arrived I was pretty nervous. I don't think I knew what to expect. When we arrived I was very overwhelmed by the amount of people that had attended. I was sort of taken back when I saw what some of the other lupus warriors were going through. Many were in wheelchairs, or using a cane. Some were completely covered because they needed to block the sun. My mom looked at me and began to cry. My heart broke of her. I remember her saying, "Is this my future?" I knew I couldn't answer that because the truth was and still is, we don't know what the future holds. But I did know from that moment on, whatever came her way, we would face it together. I had an awesome time on the walk. It did me good to get out and get moving. My weight is something I have always struggled with, and this was a very motivating day for me! We completed 3.21 miles and loved every minute of it! I had such a feeling of accomplishment when I finished!  I knew that I wanted to go to another one! I had finally found a way to fight Lupus and I didn't feel angry. I might even say, part of me felt happy. I didn't need to be mad at the world because my mom was sick. I needed to stand up and fight for her life, and lives of so many others. To date I have been a part of more than 8 Lupus walks up and down the east coast. I have traveled to Boca Raton, Florida, Atalanta, Georgia, New York City, and Harrisburg, Pennsylvania in my fight against Lupus. Numerous friends and family have joined us along the way! I'm so glad that we went to this Lupus Loop in Scranton! It truly changed my life! It's the day I began getting my life back. The day I realized anything worth having, is worth fighting for....I face the fight for not only my mom's life but the lives of all Lupus warriors every day... 
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It hadn't been smooth sailing since my mom was sick. It seemed like every year something would come up and she would be sent to some new doctor, they would run tests, and she would need surgery. It feel like a never ending cycle. My mom often referred to herself as "The Murphy's Law of Medicine." She was very prone to blood clots, which is something we became very aware of. My mom was very sensitive to the cold, her hands would turn white and become very painful to the point where she would be in tears. I felt so helpless and tried to do everything I could to prevent her from feeling that pain. We eventually learned this is referred to as Raynaud's syndrome. There is really nothing we can do about it, other than my mom needs to bundle up when she goes outdoors.
Over time my mom had a great deal of aches and pains, which I think she probably chalked up to getting older, but eventually she could barely left arms over her head! At this point it had to be addressed. I believe this led our family doctor to run a series of tests. It came back that my mom had a positive ANA test, antinuclear antibody test. An ANA test detects antinuclear antibodies in your blood. Your immune system normally makes antibodies to help you fight infection. In contrast, antinuclear antibodies often attack your body's own tissues- specifically targeting each cell's nucleus. Anyway, my mom's ANA test came back positive. The next step for her was to meet with a rheumatologist. I remember my mom being very nervous. I went with her to meet with him. I was extremely nervous as well. He came in, and began talking with us. He was even cracking jokes. He definitely put us at ease. He went over my mom's medical history and explained he felt there was a chance she had Lupus, but he wanted to run his own series of tests. It was back to the waiting game. I truly think waiting for test results is the worst part. Eventually it was confirmed and my mom was diagnosed with Lupus. Up until this point we weren't familiar with Lupus. So together we set out and did our research. It was very overwhelming! I felt as though my world was crashing around me. I was mad at the world and began questioning a lot of things. I couldn't believe after all my mom's been through we were once again hitting another bump in the road, a very large bump. I had been talking to a friend of mine about my mom's diagnosis and I was surprised when she had explained she had heard of Lupus. She was very supportive and would always lend a shoulder when I needed one! My friend and I have since grown apart, but I hope she knows what an important role she planned in my life during this time. I knew my mom had a long road ahead, but we would get through it together just like we always had... 12 years ago my mom became very ill pretty much over night. I was only 13 years old, therefore at the time I have not fully understood what was happening. What I did understand was that my world would forever be changed....
It was early in the morning, I want to say between 5 and 6 am, I hadn't left for school yet. My mom woke up in excruciating pain. I was the only one home with her. (My mom and dad divorced when I was one year old.) I remember calling my Grandma, and Ray, my step-father but at that time he and my mom were only dating. They both came to our house immediately! We decided to rush her to the ER. She couldn't even stand to sit, so she rode in the trunk part of our SUV. I vaguely remember her saying she was bleeding while we were on the way, but I had no idea that she was hemorrhaging. When we finally arrived at the hospital she was immediately taken into a room. I remember there being blood everywhere. A nurse was with my Grandma and I trying to get any information that we could give her. The doctor on staff was new and became very dizzy. He kept calling other doctors for help. As I sat in the waiting room my uncle, my mom's twin came in. I remember thinking it was really nice of him to come up, but the truth was he was there in case they needed more blood than they had on hand. Believe it or not, my mom laid there for hours before help came. They did everything they could do to slow the bleeding, but she bled for hours. After this point, things feel like kind of a blur to me. Maybe I have blocked it out, I don't know....This was some time in late May or early June because I remember not finishing 7th grade in school. My mom's kidneys began shutting down some time after this. I think it was a few days later. My Gtrandma and I received a phone call around 5 am that we needed to get to the hospital ASAP. After we got there our pastor showed up, and again I thought it was him being supportive for my family, but in reality, doctors thought it was the beginning of the end.We all took turns visiting with her since the ICU was strict about visitors. At some point she was transferred to a different hospital that specialized in her kidney condition. I don't really remember when this took place or exactly why it took place. I can remember visiting my mom in the ICU of the new hospital and every time I would go into see her, she would throw up. I would become upset and want to go back to the waiting room. In reality my mom's throat was dry from the oxygen, and when she would being to talk it was cause her to choke and throw up. I remember always having this uneasy feeling that wouldn't go away. I couldn't wait to get to the hospital to see her, but when I was finally there I was too nervous to be in the same room with her. I was terrified something would happen to her. We would spend our days, visiting in 30 minute increments. At the time I wasn't old enough to drive so I had to rely on others to drive me to the hospital. I remember praying nonstop, and I would always say the same prayer in fear that if I didn't she would die. I became very superstitious. I barely slept and my heart would stop every time the phone rang. This was a really difficult time for our family. We were all running on high emotions and low energy which caused many of us to snap at one another. Eventually the hospital my mom was in decided that she needed to be transported to a higher tech hospital. In our cause this hospital was in Philadelphia, 3 hours from my house. I was terrified. I knew that seeing my mom was going to be next to impossible and I knew if she was being moved things weren't going well. My Grandma and I packed up and headed to the city of brotherly love. When we arrived we discovered there had been a bed mix up and we were there 3 days before her. ; My mom and I have decided to document our journeys through our battle with lupus. I think most of the time I give a brief over view of what we have been through, and don't really elaborate to much on how it makes me feel or even how I react to each situation. I wanted our followers to be able to see this journey from each of our prospective.
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JessI am the daughter of a Lupus patient! This is our journey through my eyes! Archives |
