Sunday, December 4, 2016

We Were There, Take a Deep Breathe

This week in diabeatus land. Yes...I know it's spelled wrong but it sure felt like it beat us...

Everyone was sick. We took turns. No getting it all over at the same time. And as a Lupus mom I do need to warn you this post is coming from a very unrested mom, which is her own fault for doing too much...

But it's time for a valuable parenting lesson.

Take a deep breath. It's going to be hard...remember we were there once too.

We all know it, parenting is not for the faint of heart. We fail our kids. Our kids fail us. It feels like we get no where, but we must because the majority of us are productive & decent members of society.

So this is what our family learned. After dealing with continued high blood sugars after being sick, I decided to check the sweet teenager's blood sugars because she seemed a little off. Those who know someone with Diabetes knows the look. It's kind of a Hulk look. Like right before the gentle doctor changes. We call it Sunny smash. What I found broke my heart. She had missed too many checks. It was too high too even register. A reminder of how vigilant those with Diabetes must be.

We are at the point when it's time to let go a little, help her learn to take responsibility for her health.

It's hard.

It's days like this that I'm thankful for Lupus. I really could have yelled, taken away her phone, grounded her for life. But I remember how hard as a teen it is to have your life controlled by your illness. Take your meds, where's your hat, do you have sunscreen, you can't go out during the day. It sucked. Sorry, there's really no nice way to say it. At times I rebelled, four trips to the tanning bed began a flare with kidney disease.

This is hard stuff...with real consequences. When you are parenting a teen the choices they make and the choices we make in guiding them have real hard consequences.

So what did we do when we found out that letting go isn't as easy as we'd thought. We hugged her, said we'll try again, be a more vigilant, bug her a little more.

She's growing up, learning to make her own hard choices. And after a week she's got a better handle on her blood sugar. She even gained a new kind of freedom. She drove her self for the first time. This Lupus mom was exhausted, but oh so excited when she realized her teen could now drive herself. Just a little confession this said mom may have also ran around the house looking out every window and maybe on to the front porch to watch her daughter's well deserved taste of freedom.

Don't worry this was taken during her first time driving home. She's a much better driver now!
Remember we were there, take a deep breath, it's gonna be hard.

Monday, November 21, 2016

Moving On and Adding A Little Color To My Life

I like change.

Just ask Jim. Although I've agreed to not change the furniture while he's out of town due to a minor accident that may have occurred when he came in at 2 AM to find a couch in what was once a clear path, I can't help myself to seek change.

To me change is like therapy. It's my way of finding control.

There are so many variables in life we cannot control...and I may be a bit of a control freak. Luckily marriage and children have been a valuable lesson in letting go of control...but I still crave it. 

Especially when my emotions feel out of control.

My hair can easily tell my story. Almost every picture I have of myself is a different hair style or color. I chopped it all off after my sister's lupus diagnosis. After her death grey patches appeared and my light golden brown was dyed black. When I started processing her death, a perm...a new start. My lupus diagnosis, I chopped it again. Every color and style tells part of my story. 

In a rash decision last year I left it grey but chopped it again...wanting to find control. Another attempt to adopt was over and I was broken. For me cutting my hair was therapy and leaving it my natural grey just felt right. Even though I received many compliments, to me the grey was how I felt inside.

I really wanted to grow my family, to love more children. The door closed. I felt I failed. I mean look at my life. I have lupus, two kids with major health issues,  finances devastated from medical bills. I spent the past year here.  I.  Failed.

Then last week after a year of wrestling I finally broke free. I did not fail. Broken dreams happen and it was nothing I did to break them. This is my life. Blessed despite broken dreams and broken bodies. 

So today I'm making the change I can control. It's a show of healing and celebration. I am still here. I am still fighting, for my health, for my marriage, for my children.  For now my grey hair is covered and will stay that way for awhile as I move on and add a little color to my life.

Sunday, May 29, 2016

What we fight for

In a time when each month has several "Awareness" labels, it's not easy to get awareness. We are all affected by something whether it is our own struggle or a loved ones. To be honest I really hate "awareness" months. When your family is given a diagnosis you are going to live with awareness for the rest of your life. For my parents and friends with cancer, remission may have been attained but I am well aware of the emotions tied to their diagnosis and struggles. Maybe it's just me but awareness almost seems as if its a competition. Who's walk will have the highest attendance? Who's the biggest fundraiser? Yes, awareness is important but why do I have to walk or raise $100 for a T-Shirt? Why do I have to be rewarded?  Why don't we just help each other out?  What if we could just join together and celebrate and encourage those who are struggling with Cancer, Diabetes, Autism, MS, Lupus, Heart Disease, Alzheimers, and we all know this list can go on for pages.  Just share our stories and educate those who do not know their lives too are being affected. So many people are struggling, families are devastated by medical bills, hearts are broken from those who's fight ended. But what I think gets lost in these "awareness" months are the stories. Why these people need celebration and not just another walk. They need to know they're not alone, their lives are not a burden, that if today they got out of bed and made it to the bathroom alone or made eye contact their lives are Facebook worthy.
A quick note about walks and awareness events. They're not all bad. I love being able to support friends and families and seeing a community come together to support a family. My issue rests more with "corporate" events. We have been apart of one for diabetes in Fort Wayne and the walk raises money but offers no support for the families in this area. Also I thinks it's sad that many patients can't participate in a typical walk.  

So in honor of Lupus Awarness month. I am going to educate you a little bit about Lupus while celebrating two sisters with Lupus.

My sister, Brandi, and I.

She was 13 and I was 15 at diagnosis.  Most people are diagnosed in their childbearing years. Siblings rarely are diagnosed. But hey, we're not normal.  Our Lupus started out with the same basic symptoms. A rash across our face. The butterfly rash ~ looks like you've been in the sun. Anemia. Fever. Hair loss. Mouth and nasal sores. Fatigue. Joint Pain. Those are just a few of the 11 criteria for diagnosing Lupus. (Unfortunately there is no basic test for Lupus. A Lupus diagnosis is based on several blood tests along with meeting at least 4 of  the 11 criteria symptoms.) I didn't even show positive for one of the major blood tests used in diagnosis.  So I was told I was borderline. Later to be told by a rheumatologist (a doctor who specializes in Lupus) that you can't have borderline Lupus, it's like being pregnant either you are or you aren't. But Lupus is not just those 11 criteria symptoms. It can be discoid (skin) or systemic (entire body).  In my sister it manifested in her thyroid, lungs, kidneys, and liver. My Lupus manifests as vasculitis in my skin and colon, lungs, kidney, central nervous system, and severe photosensitivity. I now have the pleasure of embarrassing my children by carrying an umbrella on a beautiful sunny day and wearing a hat wherever I go.

When it comes to treating Lupus treatment plans can be just as varied as the manifestations.  Sadly there are very few Lupus specific treatments. Along with  a lack of treatments there are few doctors who treat Lupus. This has changed over the years. Brandi's Lupus battle and mine are an example of how Lupus can be treated. At her diagnosis she was given five years to live, told to stay out of the sun, and each hospital stay was used to get her symptoms under control, not fight the Lupus. When I was diagnosed 8 years later, I was given Plaquanil (a drug used to fight Malaria) an anti-inflammatory medication that I will need to take the rest of my life, told to stay out of the sun, and have blood work every 3 months to monitor the Lupus and its affects on my organs.

Five years. 

That was all our family was given with Brandi. We lost her and her unborn baby girl Krystina. Six months into her pregnancy her body was taken over by infection after a bought of bronchitis, her kidneys and liver too damaged.There would be no doctors educated in watching for organ involvement, no prednisone to slow kidney disease, no chemotherapy to stop the Lupus from attacking her body and taking her life. Even though she fought with all she had, she had no fighting chance. She was 18. Ten years before the average patient is even diagnosed.


One thing I was taught through her death it was to fight. Give my life a fighting chance until my last breath, fight for patients to receive a diagnosis, fight for their voices to be heard.

Because of Lupus complications many like my sister have lost their fight. Many like me suffer every day never knowing when we wake if our bodies will cooperate. Families and friends watch them suffer knowing they are helpless and nothing in this life will bring complete healing, This is why we have awareness we want to have our voices heard.  We want to see less die from complications. We want to know there will be a break from pain and fatigue.

I would really love to sit outside and feel the sun...

Okay. I really tried to be positive but living with Lupus or any illness, or watching our kids struggle with special needs is sad. And hard work. And sometimes lonely. But there are good moments and that is what we fight for.

Wednesday, January 13, 2016

Prosper in Captivity

My body is warning me. Symptoms of Lupus starting to slow me down, my blood work still looks good. It's time to be vigilant, rest, and let my body fight. 

It's a fight I'm really tired of. I have plans, responsibilities. Lupus doesn't care. It takes me captive.

There is one place I go when I'm tired of fighting, need reassurance, and need to surrender. There is one place where surrender gives me the strength to prosper even in captivity.

"For I know the plans I have for you” — this is the Lord’s declaration — “plans for your welfare, not for disaster, to give you a future and a hope."  - Jeremiah 29:11

The Israelites have been exiled in Babylon. They have been taken captive. We may not find ourselves in a literal state of captivity as the Israelites but we can be held captive by the struggles we face.

“Build houses and live in them. Plant gardens and eat their produce...Multiply there; do not decrease. Seek the welfare of the city I have deported you to. Pray to the Lord on its behalf, for when it has prosperity, you will prosper.”  -  Jeremiah 29:5-7

Keep moving...don't give's not the end. 

“For this is what the Lord says: “When 70 years for Babylon are complete, I will attend to you and will confirm My promise concerning you to restore you to this place.”
  -  Jeremiah 29:10

So how do I prosper when my body has taken me captive.

“You will seek Me and find Me when you search for Me with all your heart. I will be found by you” — this is the Lord’s declaration — “and I will restore you from your captivity..."  -  Jeremiah 29:13-14 

I am held captive but God knows my story. He knows how far I can be pushed, when it's time to rest. He knows when I will be restored from a flare. He reminds me this temporary captivity is only a portion of my story. 

I will prosper in captivity. Today a short walk. I grab my shoes and struggle to put them on. I notice the bottoms are stained red. Georgia clay from miles I walked while serving others just months ago. A break from my captivity.

And when the time is right He will restore me once again.