Three hundred and sixty-five days with Lupus

I’m still here, but there is a part of me that is gone.
I’ve spent the last three hundred and sixty-five days muddling through the grief brought on by being diagnosed with Lupus.

I’ve spent the last three hundred and sixty-five days mourning the loss of my former self.

I’ve spent the last three hundred and sixty-five days crying and screaming and asking God why?, all out of frustration and confusion.

I’m only twenty-three years old – I shouldn’t feel like I’ve lost a part of myself to not only one, but four autoimmune diseases.

Yet – here I am a year later, still here.

The process of grief is natural – it is to be expected.

In Ecclesiastes, the author mentions how, “For everything there is a season, and a time for every matter under heaven:”. Further down into the chapter, it specifically states various times such as: “a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance.”

And in these last three hundred and sixty-five days, I’ve been in and out of the five stages of grief.

When I was initially diagnosed, I was in denial. I said to myself, “Abigail, you’re fine.” I also told myself that I didn’t really have Lupus. I mean, how could I? I was a relatively healthy twenty-two year old. I didn’t exhibit many of the horrifying symptoms that are usually associated with Lupus.

In my state of denial, I even went as far as waiting for a phone call from my doctor. I was waiting for him to say that they misdiagnosed me, that the got the lab work mixed up with another patient – I was waiting for a phone call from my doctor telling me that I really didn’t have Lupus. Yet, that was a phone call that never came.

I remember the agonizing pain that replaced the initial shock after denial wore off. Throughout the first two weeks after my diagnosis, I really didn’t cry. It wasn’t because I didn’t want to, it was because I was trying so hard to be strong. I thought that if people saw me cry, it meant that I was weak.

It wasn’t till I found myself sitting on the couch in an amazing Christian counselor’s office that I actually cried. We weren’t even into the first couple of minutes and I found myself releasing all of the tension and anger I had been hiding from everybody. I sat there and cried in front of a stranger. There in that moment, I was forced to finally let it all go.

It took talking to the counselor to realize that I was mildly depressed. To hear someone else tell me that I was depressed, it helped put my life in perspective.

Of course, I hadn’t been eating so much. I stopped singing. I wasn’t running. All of the things that I loved doing, that made me who I was, I wasn’t doing anymore. I simply no longer had the desire to do them.

It wasn’t out of anger or lack of energy. I just didn’t feel like I wanted to anymore.

I also learned that I have pretty strong social anxiety.

The term the doctor used was this: hit rates. Hit rates are not percents. If you took the same situation/scenario and repeated it one hundred times, how likely is the person to repeat the same behavior every time.

My hit rate for social anxiety was 83. The diagnosed level is 85.

Because my social anxiety hit rate was relatively high, the Christian counselor discussed going on medication to help me with the stress that is brought on with social anxiety. Because my newly diagnosed autoimmune diseases feed off of my stress, he discussed his concerns with me about how my social anxiety could make my health worse.

After discussing this option with both him and my parents, I decided that I wanted to try it.

I remember after a few weeks of taking my prescription that I began to feel my social anxiety lessen – It didn’t go completely away, but I felt like the huge weight that been weighing me down was somehow lighter.

I found myself engaging others in conversation – even complete strangers. I found myself initiating social interaction with others. Things that I would have initially stressed out thinking about, I was actually doing them.

Growing up stuttering, this was a major break through for me. Having always been conscientious about speech, I oftentimes wouldn’t engage in social interactions to prevent having to talk.

I spent the next several months blogging about Lupus, trying to find some way to process my autoimmune diseases. I thought that if I would figure it all out, I would be much happier. I thought that maybe I could even move on with my life.

I had saturated my life with Lupus. Every time something in, or on, my body hurt, I would start scouring the Internet to see if this was a common symptom of Lupus. I would read blogs from others who also had Lupus. I made frequent calls to my doctor, asking them questions about my body and what each pain meant. I was on a strict Paleo diet, trying to reverse my disease.

It was safe to say that my life revolved around Lupus.

And after a living this way for several months, I finally got to where I wouldn’t Google search Lupus and the pains I was having. Instead, I would smother my body in IcyHot and keep on taking my handful of prescriptions. I also slid off of the whole diet thing.

Honestly, I let it all go.

And it felt really good.

I’m finally ready to just accept my disease.

I want to take charge of my life again.

I want to move forward with my life.

Just yesterday, I surprised myself when I realized I was singing at the top of my lungs in my empty apartment. I was singing hymns and just silly songs that I make up on the spot.

Just recently, I started working out again. I’ve been jogging and lifting weights. While I’m not in the great shape I was in before I was diagnosed, I’m starting out slow and working my way back.

It has taken me nearly three hundred and sixty-five days to come back around almost full circle.

Yes, this last year has been utterly miserable and agonizing at times. But it has also been uplifting and encouraging at other times.

Because of an amazing support group (family, my boyfriend, friends), I was able to make it through the last three hundred and sixty-five days.

My faith has undoubtedly been strengthened. I have learned just how compassionate and loving human beings are. I have discovered just strong I really am.

As many tears as have been shed the last three hundred and sixty-five days, there has been double the amount of laughter. For every pain that has been felt, there has been undoubtedly more good days than bad ones. Compared to the times that I’ve felt depressed or hopeless, I’ve been encouraged and uplifted much, much more.

While I will never quite be the same person I was before, I feel parts of my old self slowly coming back.

And you can’t imagine just how good it feels.

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