My First Major Lupus Flare

   A few weeks ago, it was like 100 degrees here in southern California, I was 27 weeks pregnant, and I was miserable. I was at dinner for my brother in laws birthday a few weeks prior, and all the sudden I had a sharp pain running down my right arm. It was a hard to explain dull ache that went from my shoulder to wrist. I left dinner in fear, and went to an urgent care that night. I had been getting the lupus malar rash on my face a few weeks before, but I chalked it up to too much sun exposure. The doctor at the urgent care said it could be neuropathy from my lupus and to follow up with my doctors. The next week I saw my rheumy who ordered doppler ultrasound studies in my arms to rule out a blood clot. I ended up having 3, because each one came back "inconclusive" (which is scary) and since I am pregnant there is not much more they can do but just watch that it doesn't get worse. I took prednisone for a week and thought I was feeling better, all until that heat rolled in...
   100 degrees outside and I am covered in blankets shivering with a fever. I feel like crap, my whole body hurts.  I started having chest pains when I breathed in and it felt like I was never getting enough oxygen. I kept going back and forth on whether I should go to the ER, I hate the ER, imagining staying 8 hours somewhere with a chance that they think I'm crazy.  Finally around 7pm, Matt and I headed over there. By the time I walked in my body felt like it was going to fall apart. I could barely walk. They ask "where does it hurt?", well I was there for my right side arm and chest pain, but I had to say "Honestly, my whole body, everything hurts." They gave my a wheel chair and got me in pretty fast, I'm sure saying I had a hard time breathing didn't hurt.
   The ER doctor was awesome, he actually listened to me. Usually when you say "I'm pregnant, oh and I have lupus, a blood clotting disorder called antiphospholipid syndrome, and recently tested positive for sjorgens", they kind of just stand there and stare at you, but this guy was great. First, because of the clotting problem he wanted to rule out pulmonary embolism through CT scan. I am an xray tech so I am well aware of the dangers of radiation, especially while pregnant, so it took a lot of convincing on my part. I knew that if I did have a clot, that could mean death for me and my baby so it was better to go through with it. The doctor also gave me a small dose of morphine because I was in so much pain I literally couldn't even lay on the gurney, it helped so much. They inserted the IV contrast and it made me feel like I was literally peeing my pants! Apparently that is a normal sensation, but I had to do a double take at my underwear just to make sure.
    Great news, no clot! He diagnosed me with pleurisy, inflammation of the lining of the lungs that causes pain and trouble breathing. Just another complication of lupus that I had never experienced before. Body aches, pain, fever, rash, all fit the bill to a lupus flare. I had read other peoples blogs about how they laid in bed for a week because they literally couldn't get up, I now knew that feeling. The joint pain was excruciating, and unfortunately there is not much I could take because I'm pregnant.
   3 weeks later, and I am finally starting to feel better, although my joint pain has gotten pretty bad, at least the full on body pains have subsided.
  9 more weeks to go and Baby Angus is still looking healthy:) Keeping my fingers crossed!

Pregnancy #2

        I am now 30 weeks pregnant with baby number 2. After my first crazy experience with my son, Miller, I have been seeing a rheumatologist, hematologist, opthamalogist, and even got sent to the head of hematology at USC.  They had managed to keep my symptoms under control through blood thinners, plaquenil, and bouts of pain killers.
       I was feeling great and knew that if it were possible, Matt and I wanted another child. I talked it over with Dr. Cheng, my amazing rheumy, and she did some blood tests and said she had my blessing to have another child. Pretty much, if I wanted to be a mom again I should try now, because its only going to get harder as a get older, and I had been flare free for almost a year. I made an appointment with Dr. Green, my OB. I asked him if he were willing to take on such a high risk pregnancy like mine, he spent an hour in the office with me, going over all the risks...the very real, very scary risks. I couldn't hold back my tears, I cried when he said things like, "miscarriage", "late-term miscarriage", "blood clots", and "death, although I have never lost a patient yet". Holy crap!

    I went home that night, cried, and discussed everything with Matt. We knew the risks, but at the same time what if I didn't get HELLP again this time around? They say its a rare occurrence anyways, so there was a chance I could have a fine, normal pregnancy. We decided that if we didn't try we would never know, and I would hate to grow old wondering if it were possible. If something bad were to happen, then we would know it wasn't meant to be. I was scared but excited. 1 month later we were pregnant!
    I was nervous about the first trimester just because I know a lot of people suffering from antiphospholid syndrome have a higher chance of miscarriage. I saw a perinatologist who put me on 40mg Lovenox blood thinner injections daily, and I continued taking my 400 mg plaquenil, so far pregnancy was great. At 17 weeks pregnant, they saw I also had placenta previa, so decided to take me out of work and put me on short term disability, especially because I was also having major sciatic pain.
   So I grew and grew... went to doctors appointments at least weekly.  I was seeing my OB, rheumy, perinatologist, and a fetal cardiologist to check the developing baby for signs of a heart block. Ya just another thing to add on the list. Apparently I am positive for the Sjorgen's antibody which can cause heart problems in a baby. I am trying to stay positive and be happy but I had a major breakdown. Everyone says things like, "Wow Nicole, you are such a strong person, I don't know how you do it", well the truth is, I don't know how I do it either, but ya know, I have no other choice, this is my life, these are the cards I was dealt.
    So far so good, baby looks healthy, I am semi- healthy, my goal is to get past 31 weeks. Keeping my fingers crossed.

Where to start...

I've always thought it would be great to document what goes on in my crazy life, so here we go. My name is Nicole, and I am a wife and mother to an amazing 2 year old , Miller. I have a rare blood clotting disorder called antiphospholipid syndrome along with Lupus. I know, I hit the genetic lottery. Miller is our little miracle baby, being born at 31 weeks because I got something called HELLP syndrome while I was pregnant. Pretty much my liver was failing and I needed a blood transfusion and I was losing my vision in my right eye because my blood pressure was 200/160! The only cure is to deliver the baby. I woke up in the ICU and Miller was breathing on his own but only weighed 3 pounds. Without him, I would have never been diagnosed with my diseases until I possibly had a stroke or DVT, for that I will be forever grateful.