I guess we should start from the beginning, now keep in mind... I am not a blogger, or a writer of any sort, these are just my feelings. It is important for me to express them, maybe someone who is reading this will relate to me, and feel safe to talk about his or her feelings as well.
I was diagnosed at the age of 11 with SLE. At the age of 5, I had joint pain and a severe rash that covered my body. For the longest time the doctors thought it was just a heat rash. Finally, a dermatologist did a skin biopsy, and low and behold, I had lupus. At first this was not scary to me, I mean I was 11! What did I know about lupus?? Thankfully, I really didn’t have any medical problems, besides the rash. That same year, I underwent a kidney biopsy and the doctors discovered I had kidney involvement, but again, no big deal to me. I felt the same, I had been dealing with the joint pain and rash my whole life, this was normal life to me. I was put on a regimen of steroids, a hefty dose, at first it was IV and then it was at least 60 mg a day. You all know that prednisone causes “moon face” and I had a bad case of it. I grew up being picked on severely all throughout school. Time went on and I was diagnosed with Raynaud's, RA, hypothyroidism, Sjogren's, TMJD, migraines, bipolar, and depression.
It was hard for me to understand why this all was happening to me, I mean what did I do to deserve this? For many years I had a pity party, I did not know anybody else who had Lupus and I felt alone.
Then one day as I was looking through Facebook I found the Lupus Alliance of Upstate NY. I saw that they were doing a lupus walk at the local mall. I figured why not go and see what this is all about? Well, I have to say it changed my life. The first year I met so many different people, with different struggles. I have done this walk since 2007, and it is something I look forward to every year. It gives me hope, and I don’t feel so alone anymore. I can talk to people who understand some of what I am going through.
Let’s fast forward to present day. I just turned 33 years old! Yay me, right? Hahaha! For as long as I can remember, I have wanted to be a mother. As the oldest of seven kids, I was always taking care of all my siblings. My goal in life was to be a mom. I really didn’t care about school, or a career...all I wanted was to be a mom. Don’t get me wrong, I have a career now, and though it took me a very long time to get where I am, I did it! About a month ago I started tapering off all of my medications... I mean all of them. That includes prednisone, plaquenil, procardia, synthroid, my benlysta injections, and all my psych medications. I thought that to become pregnant I could not take any medications. I was so happy and for the first few weeks I felt great and was very hopeful. Then it happened, my moods starting declining, my joints started aching, I have fevers, my rash came back, it was one of the worst flares I have had in a long time. I ended up in the hospital for two days and out of work for a week. This broke me, I thought I can never be a mother if I can’t be off of my medications. How will it ever happen for me? My bipolar and depression were full blown, I couldn’t get out of bed on top of the lupus symptoms, and I wanted to give up.
On my birthday, September 28th, I met with the high-risk doctor at my OBGYN. I knew it was a shot in the dark, but I wanted to see what my options were. To my surprise, I CAN take most of my medications including plaquenil. She explained all the risks and the process, and all the testing that would have to be done throughout the pregnancy. This may not seem like a lot, but this was the little ray of sunshine I needed. There is hope for me, I can possibly be a mom!
I have to say that I am feeling much better, I am back on all my medications for the time being. We made a plan that I would wait a few months, taper my prednisone and try to start planning for a baby in December. I know it is going to be a long hard road, but I have hope.
I want to end this entry on a good note, I am so thankful for More Than Lupus, I now can express how I feel. I hope at least one person can relate and take something away from this.
Article by: Regina Dorin
Hi, I am Regina. I am 33 years old, I have two cats, Mia and Ariel, they are my life!! I am the oldest of seven children with five nieces and 3 nephews. I am currently working on my Masters degree in child and adolescent psychology, 9 more weeks to go! I am a service coordinator for the Center for Disability Rights. I am originally from a small town, Oswego NY, but now live in I Newark, New York with my boyfriend and my fur babies!