You may be saying “Dang girl, what’s up with all the posts?” The answer is simple, I have no idea when I will post again (took me two months to log in) so while baby is sleeping and I feel good then I am posting all my pent up thoughts so I don’t feel bad when I go back to not posting.
The pic above of the family is our first day of school pic! My husband had his first day of class and so did I …baby boy went to his baby school aka…grandma’s! Love that this was our first day of school as a parent!!!
You read by the title Lupus found me. I was flare free and feeling good all summer and that was with the hot sun! Yes, running around the park and playing soccer outdoors was not smart…I got a huge rash to prove it wasn’t my best idea, but I could do it. I swam almost every other day with baby boy…we did swim lessons and lots of visits to the park. Yes, we were the crazy parents that took like a hundred pics each day of the swim lesson. I held him one day so dad could take pics then we switched. Even with all that sun, I managed to be stress free and well rested to avoid any flares.
Then school started.
From the first week of staff development the flares began to build. I could feel the chills, the fevers came back, the rashes were on my face, arms and neck and that was just the beginning. By the first day of school, I could not move in the morning. Every joint was throbbing in pain. To turn over and turn off the clock was a battle. Getting out of bed was work. The first thing I did in the morning was take an anti-inflammatory pill. By midday, I felt better but by the end of the day I was exhausted. I began to take 5 hour energy for the first time. I could not last all day. I lost my voice, I began to get the whole sexy raspy thing that is only cool for a day. Going to bed at nine was a gift, but that meant SO much did not get done around the house or in the classroom. I was literally making it day by day. For the first time I felt like this is the invisible disease. From the outside I look fine, but inside I am hurting and just getting to work was a huge accomplishment. I googled Lupus flare more than I ever did before and I actually related to a video that described Lupus as the disease where “you don’t look sick” I understood the spoon theory that every choice I made meant I had a little less to give later. What made it all worse, is that I committed to do a half marathon in my summer I feel great days and running was no longer an option. I felt bad for not training, but I had nothing to give.
Thank God I began to do a daily devotional because I needed the prayers and affirmations. To be honest, I have been in a flare from the middle of August until now when I got back on Prednisone. I weaned myself off it, but now I am back to 5 mg a day. Not much for most, but I know have to wean myself back off it later. For now, I feel better than I have felt in over a month. I can be up at this hour typing and not wanting to sleep forever. I can pick my son up in the morning instead of grimmacing and praying I don’t drop him. I can turn in the middle of the night without waking myself up in pain. I can open bottles and bend my fingers. I can walk. I can bend my knee. Lupus affects my skeletal system the most and it hit hard for the last month. I got depressed again, I was afraid I would not be able to do my job, I thought that my life would be lived in pain forever. I questioned going on disability…it was bad. I did not want to take the meds, but finally realized I have to and I have to keep taking them until we figure out a different plan.
It finally clicked to take the Prednisone and keep taking it everyday. I first thought that once I felt better then I could stop, but my body was addicted again and stopping meant hurting. I feel so much better that I forgot what it felt like to feel normal. Again, I know now that this is the real me and not what I had become. My husband put it nicely “so I won’t have to live with that other girl…this is you again?” This is me.
I go back to the doctor in October to learn what to do. This may be my new norm with a kid and job. I have to be active all day and then come home and be active all evening for my baby. Remember this is my first year to do this so I am learning to do both, but I am also learning what it feels like when something is wrong and doing something about it.
The worst part is I did NOT lose weight dramatically which I liked until I got too skinny and looked like death when I was diagnosed. My belly is growing and it makes me mad because that is the only good thing about Lupus which is unexplained weight loss. If I am going to flare up at least give me that one symptom!
The good news is: I am able to type this post which I have not wanted or been able to do in a while.