I have definitely been missing in action, I know. I haven't posted in forever. It's been way too long. But life has just sort of gotten in the way as it does. I've been busy dealing with work, being a mom, and some recent health issues that have turned my old life a bit upside down.
Last June I noticed my left foot began to hurt, it felt stiff and painful to bear weight. I was diagnosed with tibial tendonitis and put in a boot for 4 weeks. The odd part was that I had no injury or real explanation for it. I completed physical therapy and got the boot off, only to get it back on 2 weeks later- this time for 6 weeks. During that time, my right thumb suddenly swelled up like a sausage and became stiff and achy. I could no longer use it to unlock my daughter's seat belt, or even to press the button on my electric toothbrush. I was baffled and asked my orthopedic foot doctor about it. Could they be related? He suggested we run blood work, which revealed sky high inflammation. Other than the inflammation level, my blood work was negative for markers for rheumatoid arthritis, lupus, and the other autoimmune diseases I was tested for.
With this information, I was sent to a rhuematologist who quickly reviewed my symptoms and felt that I definitely had an autoimmune disease that was causing inflammatory arthritis. We just were not sure what type since I was negative for all the blood tests. My symptoms very quickly began to get worse. My shoulder and knees were now involved and I was in pain daily. Doing the simplest of things was exhausting and painful.
Standing to cook dinner, getting dressed, opening things, going up or down stairs.. it was almost unbearable. The worst part was the exhaustion. I was just so tired, even holding a conversation was exhausting. As soon as we knew that my immune system was attacking my joints, I read everything I could about the various types and treatments, risks, and worst-case-scenarios. I was petrified and truly felt like my life as I knew it was just slipping through my fingers. Even sitting was uncomfortable.
I began to feel incredibly anxious and depressed. It was hard to "keep up appearances" and to continue going to work as a pre-k teacher, taking care of my daughter, and cooking dinners. Grocery shopping was nearly impossible. I had to get a stool to sit on in the kitchen to cook. Every joint in my body just felt like it was stiff and had a deep bone ache.
My social life changed dramatically too because I was too exhausted to host friends for dinners like I so loved doing, and even meeting friends for dinner out was exhausting because of getting ready and socializing for more than an hour just wiped me out. I had to withdraw from so many social events and literally put my social life on hold completely. I only kept in touch with a few extremely close friends that 100% supported me and lifted my spirits during the whole ordeal, understanding if I couldn't hang out and loving me anyway.
I felt so full of guilt for my husband because while I was still going through the motions of each day, taking care of my daughter, packing lunches, teaching my class, cooking dinners, doing laundry... I felt like I was going to crack and I did not want to let my husband down. We are teammates and he needs me. He has an incredibly high stakes and demanding job as an attorney, and he needs me to pull my weight. I didn't want my daughter to see me cracking or to worry about me. I did everything I could to hide my on-the-verge-of-tears face from her. Only once did she catch me crying.
Thankfully, I live only a mile from my parents house and many nights after I finished the day, dinners, lunches, cleaning, laundry- I was just hurting so much that I had to cry. I'd go over to my parents house and just cry into my moms arms. I'd tell her all the things that I needed to vent about, all my worries about losing all function, my future... everything. And she would hug me and listen.My dad comforted me too. He told me about the time he lost nearly all of his eye sight in one eye due to a virus. I remember this happening when I was a teen, but I just remember my dad being so brave and stoic. I never knew he was so scared and fearful. He just did it. He shared with me about how life just throws us these curve balls sometimes and you just have to dig deep and keep on keeping on.
I thought and thought about what he must have gone through. Several surgeries. Fears for his future. He even did an experimental surgery, which was unsuccessful. Yet he found that strength within himself to decide not to be a victim of his circumstances. He found grace in his struggle.
I decided I was going to do everything I could to feel more in control of my situation. I wanted to feel strong again. I began by removing gluten from my diet, as it can exacerbate inflammation. That helped some. I also started exercising daily like my life depended on it. My sanity actually did. I know you must be thinking, exercising?! How??? Well, I did some crazy things. Somethings that I just hope my husband never got on video. But we both got a good laugh. I could only use certain joints and bend certain ways. I could not stand to exercise, but I could lay on the floor, and there are a lot of things you can do on the floor. I used to teach aerobics so I got quite creative and I started to push myself.
After every floor sweat session I actually felt a sense of pain relief and strength. I felt mentally better because I was showing myself what I could still do. I was proving I was still capable of some things. I listened to the same three songs over and over (Chandilier- Sia, because I was truly, "Just holding on for tonight, don't look down, don't open my eyes." Brave- Sara Bairelles because, "Maybe there's a way out of the cage where you live, maybe one of these days you can let the light in. Show me, how big your brave is." and Chain smokers- Don't Let Me Down, because, "Crashing. Hit a wall. Right now I need a miracle.") I knew I needed leg strength so I did more straight leg lifts than I could count. When it got easy, I added ankle weights. I'd lay on my stomach and lift my legs and arms and pretend to swim to tone my back muscles, legs, and arms. I slowly began lifting weights- only 3 lbs and 10 reps, but worked up to 8 lbs and 40 reps. I can now hold planks, do push ups, both regular and tricep push ups, and my flexibility has improved immensely. When I started, I could only handle about 5-10 minutes of exercises, but am now almost up to an hour. I've also begun several medications to treat my inflammatory arthritis and have had some relief from these.
I am eternally grateful for these medications, and although there are risks, the benefits absolutely outweigh the risks. I know I would not have such a positive result without my mental strength and my physical strength. I am stronger now than I was last June. I've lost 16 pounds since last June and am finally feeling like my life may actually turn out to not be such a tragedy, but more of a story of survival, strength, and accomplishment.
I'm not really sure what my future holds. I'm slowly improving every day. I don't have constant pain and my doctors are watching me carefully. I may not ever be able to go jogging again, but I try to focus on all the things that I can do. If I take breaks and wear my knee braces, I can do most things that I want to do, plus I have most of my function back in my thumb and it's only getting better- so who knows! I expect to deal with flares in the future. I know I will have periods of time when I can do less and other times when I can do more. But ultimately, I know my strength. I know what I'm capable of- even when I felt like I could hardly move.
I feel that my life is worth fighting for. I still believe that God can help me get through anything I'm handed in life. I'm not sure I believe that he chose this for me per se. I just think he helps me get through. He helps me be brave and he reminds me, every single time I look at my daughter, that He is so good. He will hold my hand. And He will never leave nor forsake me. There is grace right in the midst of the struggle, but you have to get your head above the water to see it sometimes. You have to swim on your own right through the pain.
I'm embarrassed by the length of this post. If you've read it all, I thank you and I implore you to take your own battle- whatever yours might be- however big or small... allow yourself to be vulnerable, to be scared by your situation. Don't hide behind the shame that you are not perfect or "just like everybody else." Be brave in your imperfections and put one foot in front of the other. Take care of you, be patient with yourself, and above all- get your head up and just keep swimming.