“I was initially diagnosed when I was about 6 months pregnant with my son.
For those of you who have been pregnant, you know you have a ton of blood work done consistently during your pregnancy. Well, after one of my routine tests, I received a referral for a rheumatologist. I had never heard of this type of doctor so I looked it up. A rheumatologist specializes in disorders of the immune system, like rheumatoid arthritis and lupus.
When I went to my appointment, the doctor explained to me that I tested positive for lupus, but since I didn’t have any symptoms, it could be from my pregnancy. She then said if I don’t develop symptoms within three years, then it was pregnancy induced. My husband bought tons of books about lupus and we proceeded to read up on it. I remember telling my husband that I could have the lupus that only affects the skin.
Unfortunately, that wasn’t the case.
A few days later, this same rheumatologist called me and told me that I should call my Obstetrician because I had high blood pressure. I was a little alarmed but didn’t really think too much about it. I called my OB/GYN and she told me to come in right away. Now, I was getting worried.
My husband was at work in NYC and I was home alone with my daughter, who was 3 at the time. I managed to get my brother to watch my daughter so I could get to the doctor’s office. She took my blood pressure and told me I had to be admitted to the hospital for preeclampsia. Imagine, sitting there, alone, and being told you have to go to the hospital right away. I started to cry. I was so afraid. I pride myself on being very strong and independent, but in that moment, I was TERRIFIED.
The doctor consoled me and explained that they have to monitor the baby and me because I could have a stroke because of the high blood pressure. I spent 4 weeks on bed rest. I could only get up to go to the bathroom. If I walked around or stood up for any length of time, my blood pressure would skyrocket. As a result of my preeclampsia, my son was born a month early.
This was my first experience of lupus affecting my body. My body was attacking itself and my baby. Thankfully, he was born healthy in spite of being a month early.
Three years later, I noticed that my legs were swelling a lot. I saw my general doctor and he wanted to dismiss it as age and standing a lot, which I did do a lot of at my job. However, I did not accept that answer because at the time I was only 33. I should not have swelling in my legs! As a result, he did a bunch of blood work to figure out what was going on.
I will remember this day always…my family and I were on our way to our cruise vacation when my doctor called and asked me to come in that day. He told me I had blood and protein in my urine and didn’t think I should go on my vacation. WTH? Oh no, I was going on that vacation! He called a Nephrologist (kidney specialist) he knew and gave him a quick and dirty update of my situation. They prescribed me a few meds and told me to stay out of the sun and eat no raw fish or vegetables. I then promised to see the Nephrologist as soon as I returned from my trip.
So, once I got back I went to the Nephrologist and I was told that I have a low platelet count, which means I could bleed to death and that something is going on with my kidneys. Based upon my labs, they were concerned I may be headed toward kidney failure and needed to start chemo…
CHEMO??!!! I just looked at the doctor like he was crazy. I didn’t feel that sick, I didn’t look that sick…but, I was really, really sick.
I felt like I was in a dream state and I just couldn’t believe I was at this point. I remember being prescribed high blood pressure medication but I didn’t take it. The doctor had to tell me that I had to take it because my high blood pressure is damaging my kidneys. But once he explained to me that my blood pressure, cholesterol, protein and blood in my urine, and the low platelets were all because of the lupus, I took my meds faithfully.
I thank GOD that I never had to go through chemo, but I did have to take several medications every day three times a day. I had to see a rheumatologist, nephrologist and a hematologist three to four times a month EACH! I saw the hematologist every week and had blood work done every week. I had a bone marrow biopsy that was unbelievably painful! I also had a kidney biopsy that showed inflammation, but no damage. Hallelujah!!
I have to be honest; there was a brief moment during this time when I wasn’t sure I would be around to see my children grow up. This was the hardest thing I have ever had to deal with. I wouldn’t wish it on anyone. I wanted to share with you how devastating a lupus flare can be to those experiencing them. They may look fine on the outside but they aren’t fine. Most people didn’t realize I was sick, except if they saw all of the medicine I had to take because I had to take medicine 3 times a day.
So, if you know someone who has lupus and he or she tells you they are tired or they aren’t feeling well…believe them. Thanks for allowing me to share my journey with you.”
This story was submitted to Love What Matters by Felicia Petway of New Jersey. You can follow her journey on Facebook and on her website. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
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‘I love when you are healthy, and can play with me,’ my son said. That CRUSHED me. I was forced to observe my son from a distance, watching his life from afar. I couldn’t join in.’
‘I can tell by the tears in your eyes no one has believed you, have they?,’ he asked. ‘No, they haven’t.’ He then replied, ‘Well I believe you.’ I had felt like a crazy person.’
‘I’m ok to keep repeating until I pass.’ This is my adopted brother. His mother died of lupus; his father has a new family now. He’d need to repeat 6th grade.’
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