I'm not usually a real open person with people that I don't know so this whole blogging thing is very different for me. I decided to start this blog so people can have a better understanding of what I am going through, which is kind of why I wish I would have started this a little sooner. I appologize because this blog may be a little bit longer than most as I am trying to sum up my past 3 weeks.
If you have no idea why I am blogging, I would advise reading the tabs at the top of this page to get a little background knowledge of my situation.
This whole month has been one of the most difficult times of my life. Usually, I am on medication and when a flare occurs my Rheumatology doctor is able to take care of the situation immediately. Since I discovered I was pregnant I have opted to stop taking all of my medication. All of my medications can affect my baby. If I continued to take the medicine the chances of my baby having a birth defect (or something worse happening) would be more likely. I felt like it was selfish to continue taking the medicine to help myself knowing that there were chances I was harming my baby.
The problem with not taking my medication is that I could have a flare at any time. For several months, the only thing I have been taking is prenatal vitamins. About two and a half weeks ago, I began experiencing a flare from my autoimmune disease. I expected it was going to happen at some point in my pregnancy, but I never thought it was going to get as bad as it did.
On a Sunday morning I woke up somewhat stiff and started having a hard time walking. Unlike before I didn't have any medicine to reduce my flare. I took some Tylenol Extra Strength since this is one of the only pain relievers I have to take.
The next morning was worse. I struggled getting out of bed and walking around the house. I got in my car and was in pain the whole entire drive to work. When I pulled into the parking lot I dreaded getting out of the car. It took me a few minutes to swing my legs out and stand up. I stood there for a minute as my eyes swelled up with tears. I began feeling some of the worst pain I've ever felt in my life. I took a deep breath and built up my courage to walk up to the building. I waddled and limped all the way there. Immediately one of the managers knew something was wrong and told me I shouldn't be working. She called someone else in to take my spot. I took my time getting back to my car and immediately called my fiance, Stephen, warning him that I would need help when I got home.
I called Stephen when I was pulling into the driveway and he met me outside. I could barely get out of the car. He helped me walk all the way back to the room and helped me as I struggled to somehow crawl into bed. I was so exhausted and in so much pain all I wanted to do was sleep. I took a nap and when I woke up I called my doctors. They wanted to see me before they decided what to do. The appointment they set me up was for three days later, on Thursday. Looking back, I didn't know how bad my flare was going to get, but I should have asked for the appointment to be as soon as possible.
Thankfully, I don't work Tuesdays. I go to therapy on Tuesdays. Therapy helped, but the pain came back and only got worse. The next two days were by far the worst part of my flare. It hurt to lay down. It hurt to sit. It hurt to stand. And it definitely hurt to walk. Standing up from sitting and standing to sitting down were THE worst parts of my day. I can only imagine how inflammed and swollen my SI joint was because the pain was unbearable. I really think it's hard to explain for anyone to understand what I was going through. The best comparison I can give is imagine having the worst headache/migraine you've ever had times that by ten and then the only thing you can take is baby asprin for the pain. Yeah, Tylenol Extra Strength was doing nothing to help compared to my usual medications.
I was miserable to say the least. It took about 15-20 minutes to go to the bathroom, which was 10 seconds down the hall, and back. I used all my energy to sit up in bed. Once I was up I had to prepare myself to stand because when I did stand pain would shoot down my leg. My muscles started tightening up which made the pain worse. Every time I put weight on my left leg I felt pain shoot down and I felt like my leg would give out. Getting to the bathroom was the easiest part because I hadn't been up for very long. Remember how I said standing to sitting was one of the worst parts? I tried bracing myself on the sink and would try to slowly sit down. Sometimes when I was sitting my leg would spaz out making it feel like it was impossible to stand back up. Everytime I tried to stand it would spaz over and over sending sharp pains down my leg. By the time I finally was able to stand it took all my energy out of me and I was in so much pain I literally couldn't walk. Getting back to bed felt like it took forever. If Stephen was around (which sometimes he was at work) he would come help me. I used him as a crutch and tried to put as little weight as I could on my left side. The bed is higher up so getting back in it was quite a task. At this point I would be crying. Stephen would say, "it's going to hurt whether you try to pull yourself up or whether I lift you, but if I lift you it will be over faster." He lifted me into bed and once I finally was able to get comfortable I would just go back to sleep.
This was obviously a reoccuring issue. I drank a lot of water and with being pregnant you have to go to the bathroom all the time. I dreaded going to the bathroom so much that I started drinking less water. Well this was a bad idea because the more dehydrated you are the more your muscles tighten and cramp up. The more my muscles tightened, the more pain I was in. I felt like I was in a lose-lose situation.
I have never felt so pathetic or helpless in my life. I don't ever wish that pain on anyone. Therapy said it was like I was walking around on a swollen sprained ankle without any medicine, crutches or anything to help. Once I was able to see my Rheumatology doctor he put me on prednisone. I was really limited on options of what I could take because of the baby. The prednisone only helps with reducing the flare it didn't help with the pain. The next few days I only felt a little better. I was still pretty helpless and didn't leave the house for days.
Obviously with being in so much pain, I was not very active. The whole not being active thing kind of hurt the situation also. The more active I am the better I feel because I am not stiff and the less pain it causes. There was nothing really I could do. Days seemed very long and boring. I learned there's really nothing on day time TV.
Most people know pregnant women have lower back pain. Unfortunately, I have the pregnancy back pain PLUS my autoimmune disease back pain. The pain is more than discomfort, it's extremely severe. I knew I wasn't going to be a normal pregnancy case for my OBGYN or my Rheumatology doctor. If I had to guess, with my disease being more common in men, I'd say neither one of them or obviously myself have really experienced a pregnancy with my disease. So we are all learning from this.
We ended up having to increase the milligrams of the prednisone because I wasn't seeing enough of an improvement. Since then, I have been feeling better. Slowly, but surely. I am also in a pregnancy back brace which we think is also helping. I've learned that my disease is on my right side making the movement in my right hip and SI joint limited. This means my left side is doing all the work, plus extra work to make up for what my right side isn't doing. This also explains why my left side was so inflammed.
For a while I thought things weren't going to get better, but things are finally starting to turn around. Right now we are trying to taper me off the prednisone and trying to have a plan of action in case a flare occurs again. I know it is likely, especially because of the weight gain and how my hips are being altered.
As of right now, the baby is doing well and I am slowly beginning to recover.
