In January 2006 I went snowmobiling. After a long, cold weekend I noticed that went I changed temperatures (like going from the outside to the inside) a few of my finger tips would turn a little numb and get white. I ignored it.
I was pregnant. I had more side effects (fatigue, achiness, shortness of breath, a nagging cough) then I remembered with either Emma or Jake but I was older and had two kids at home so I didn't think much of it.
Three particular instances remain very clear in my mind:
- Standing at the end of our bed one morning in March or April, coughing so hard I couldn't catch my breath and saying to Bill "honey, I'm worried. If this cough doesn't go away, there is no way I can get enough oxygen to get through delivering this baby."
- Sitting at my desk one day at work, my neck had been bothering me for days and it was so unbearable at that moment that I could hardly lift my arms. I had to leave to have a massage therapist just so I could get through the day. When I was at the therapist (a client of ours) she said she wasn't sure she had ever felt anything like it before and she worked at it the best she could.
- Walking back to the bank from an "after work event", the end of April, with two of my coworkers commenting on how I couldn't believe how bad my hands and my knees and my ankles ached. The coworkers were both men, both dads, and I am sure they thought it was going to be a long pregnancy for everyone.
The next day, I was getting ready for work, putting the breakfast dishes in the dishwasher and there was a "pop" and water gushed down my legs, I went to the bathroom in absolute terror with the phone in hand and I called Bill at work and told him what happened. He did his best to calm me down, told me to call the doctor and that he would be right home (he was downtown at work already and at least 30 minutes from getting home). The next call was to the nurse. She was so calm and so positive and she took down all the information, told me not to worry and she would call me back. I was not having any cramping and that was a good sign. The next call was to my dear friend Brenda. The kids were both still sleeping. She lives a half a mile away and was here in a heartbeat. I was sitting in a chair with a towel wrapped around my waist and tears in my eyes and she hugged me, said she would pray with me, she got clothes for the kids together and whisked them out the door. She would get them to school. Bill got home. We went to the doctor. The whole way there Bill kept telling me it would be OK. Whatever happened we were together. We had each other to hold on to. We could do this. The doctor listed with the ultrasound wand and didn't hear the heartbeat we had heard many times before. She said not too worry she would listen with an internal ultrasound and as we prepared for that she said "I am so sorry, the baby is coming...." I started contracting but not hard enough to deliver so I got an IV of patocin. The contractions came harder and the baby was delivered there in the last room on the right. There was not enough time to get to the hospital. Bill held my hand the whole time. He was so strong for me. There was a nurse, I think her name was Grace. She was a labor and delivery nurse and she was so caring and compassionate. She called me later that day. She called me the next day. She really cared a lot. That afternoon when the school bus brought Emma home Bill brought her upstairs and we told her that the baby was born too early and small to live outside mommy. Now those are some tears I will never forget. I am not sure there is a greater pain.
Guess what....we had plans to go to DisneyWorld. The kids very first trip to the Magic Kingdom and there was nothing that was going to stop me from going there. We were suppose to leave on Saturday but the doctor would not let us go until Sunday or maybe Monday but we went. There was some concern because I was running a fever and having terrible sweating episodes. I wasn't not going to go to Florida. It wasn't the trip we had planned but we all needed the distraction. My arms ached. I remember reading that this is often a symptom of losing a child. The moms arms aching to hold that little one again, I believed my symptoms were in my head or symptoms of this tragedy my body had just been through. On the beach in Florida I watched the kids pick up seashells and build sand castles and when it was time to go, I couldn't get up. Really....I could not stand up. My arms were not strong enough, my legs were not strong enough. I called for Bill and once he got me to my feet I could walk but I was scared.
When we returned to Milwaukee ( a week later) I called the doctor and said that I was worried because the symptoms that I thought were related to pregnancy were still there and I was clearly not pregnant. I saw my internal medicine doctor, she ordered xrays of my hands and wrists which were clearly what was bothering me the most and in that same appointment had me see a rheumatologist. He looked at the xrays, didn't see any joint damage and what seemed as an after thought he listened to my lungs. He heard something that concerned him and sent me back to xray and I had a chest xray. The radiologist read this right away and the next thing you know I am back with my primary care doctor (three hours later) and she is telling me I have congestive heart failure. They did a comparison and my heart seemed to be enlarged from an xray that had been done a year prior. I called Bill who was of course wondering where the heck I was all this time and I remember telling him I was on my way home and we would talk when I got there. I could not imagine telling him this over the phone. More tests, EKG's, EMG's, MRI's appointments with Cardiologists, Pulminary Specialists, Neurologists, the first diagnosis was interstatial lung disease (my lungs had "ground glass" that showed up on the MRI) in mid-May and a biopsy from my left thigh lead to the additional diagnosis in June of 2006 of Myositis.
So that's it in a pretty big nutshell. I have a doctor appointment tomorrow at 2:30 with my rheumatologist. I haven't been feeling very well for a week or so. I am now back on 40 mg of prednisone as well as all the other stuff and in hopes that tomorrow other options will be considered and presented. I'll keep you posted.
No more looking back for a while. I wouldn't want to miss what's in front of me.
Thanks for checking in. This continues to be a great form of therapy for me.
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