Archives For lupus awareness

My forever accessory to life

My forever accessory to life

When my face is rash free, my joints are treating me nice and my fingers don’t go crazy white I can forget that I have an illness. Mostly when I have had weeks and even months of feeling better than usual. The thing about Lupus is that majority of the time it doesn’t show through on the outside. I look just like everyone else, I seem to be healthy but reality is far from that. There are times when I look into the mirror and think back to that moment I heard “You have Lupus” and find myself doubting those very words. Could it really be true? I have felt so good lately. I look okay. Maybe it was all in my head. But those thoughts come to a sudden jolt when I am reminded of my disease every day by my twice-a-day pill organizer. What twenty-something has a pill organizer? Just those that need one..

The truth is I am not in denial of my diagnosis. I’m actually okay with it. But sometimes I find myself looking and feeling like I used to and then everything becomes surreal. When I actually stop to think about those words “You have Lupus” it’s hard to believe. Not because I wish it weren’t so or because I fear what is ahead. It’s hard to believe because who thinks that they will have their world altered by words like that? No one. I seem to be healthy, and sometimes I even feel that way. But then I get reminded of just how invisible this illness really is when I wake up with achy joints and the beautiful butterfly rash to accent my face for the next several days and my stark white fingers that are my winter accessory. Truthfully it’s as simple as this… I don’t think about my disease all the time and if I am having several good days in a row I forget about this part of my life, that I have Lupus. But, I think that is a good thing because it’s pretty great that people don’t see me and see my illness. I will talk to people about it with all honesty, but I like knowing that it doesn’t have to be me. I think it’s okay to forget about your diagnosis because every day when I take my morning and evening medicine that is enough of a reminder. I don’t need to dwell on it.

I do not fear what is ahead. Rain or shine, God Has plans far greater than mine, and that includes my disease!

Go On, Admit It.

September 7, 2013 — Leave a comment

This is not an easy post to write. You see it is very common for people diagnosed with any disease to struggle with depression. But, no one wants to talk about it. Why? Because if you admit to having dealt with this issue then suddenly you will be seen as an emotionally unstable basket case. At least that is what we believe others will see.

typewriterThe truth is, it’s very common to deal with depression. In fact the Lupus Foundation of America states that “between 15 and 60 percent of people with a chronic illness will experience clinical depression.” That is a significant number! So why do we fear to mention this “symptom” of our disease? Because we are scared that others will view us differently. 

I have dealt with depression. There I said it. And honestly it’s not even easy for me to admit to you right now. I am actually sitting here thinking about your response as I type this.

At first I didn’t even realize that I was dealing with depression. I thought that I was emotional for one reason or another. When I finally began to realize what I was dealing with I didn’t want to admit it out loud because saying it means that it’s a reality. The thing is I wasn’t depressed about any one thing, I would find myself crying for no reason at all and frustrated that I couldn’t figure out why. I struggled understanding what was happening because I never really had a melt down after being diagnosed. There was a peace that I felt when I heard the words Lupus. There was finally a name to the problems I was having, and I knew that everything was in God’s hands. But, what I didn’t take into account was the changes that happened days, weeks and even months ahead. Fatigue that caused our family to end a Saturday outing earlier than normal, nausea that lasted all day, painful joints that left me sitting on the couch with heating pads all evening. It could be much worse, but it was change that I didn’t see coming. I also now know that certain medications can have a side effect of depression. Eventually my emotions began to shine through and I was able to see that yes, I was dealing with depression.

I don’t believe that depression is something that can ever truly be a hurdle that you leap over and never come to again with a chronic illness. The difference is that once you know it can creep up along your path at anytime you know what to do with it. For me, I look at it as another way to help others. You see I truly believe that my Lupus is more than just an illness. It is a ministry. If I didn’t battle with the things that come with my disease then I wouldn’t be able to encourage others in the way that I can connect with them now. So I write this to you today to say that it is okay to not be perfect! It is okay to admit that our illness stinks! It is okay to admit that your having a rough day! Because then we can stand together and fight our illnesses side by side!

I Am Not Lupus

February 25, 2013 — Leave a comment

In a little over a month it will be a year since I was diagnosed. To receive a diagnosis that changes everything is tough. You never know how you will take that kind of news until you are faced with it. It can be so easy to sink into depression, searching for the answers to questions that run a continual loop in your thoughts… why me? Why am I sick? What will the future hold? It’s also difficult to process because not everyone will understand what you are going through, because you might not look sick. But we can not stay in this place! When we stay there it can be a long and bumpy road ahead. I believe that my God is with me each and every day. He is there on good days and my horribly flared up days. I have no doubt that my going through this diagnosis and now living with Lupus is teaching me things I would not have learned otherwise.

Snow Day

There is so much more to me than just my Lupus.

But, we all have bad days and sometimes we just need a little reminder… some inspiration to keep us going. The truth is I don’t want this blog to be a constant story about the woes of my disease. Sure there will be posts about some rough flare ups, that’s just part of it. The point is I have Lupus but, I am not Lupus. There is so much more to me than that. I am a wife to the most amazing man who I am blessed to say was my high school sweetheart. I am a mom to an adorable little boy. I am a writer. I get so passionate about writing my thoughts, creating make believe in my novel I am writing, and sharing and expressing myself as a writer. I look at my disease as only giving me more perspective, not just my sole purpose of writing. Lupus is something that affects me every day. Even when I am feeling good I still have things that just come with having a disease to deal with that no one else has to worry about. It will always be a part of who I am. But it doesn’t have to be my identity. I don’t have to be strictly Lupus.

After several months of processing through my diagnosis I decided to take this blog in a different direction. I had been writing this blog for a while but felt it was time to for a change. For me Raising Inspiration is about my life, my journey and my disease. I want to spread a little awareness and some inspiration. My hope is that someone who is having a bad flare up will stumble across here and see that tomorrow is a new day. Perhaps a little laughter is what they find and it brightens their day, because sometimes laughter really is the best medicine. I don’t know why I got Lupus, I just did. And that’s okay. It’s part of who I am and now I have more to add to my story.