Nothing is what it was to be.........

The weekend for the Lupus walk is upon us. But nothing is what it was to be... Here I sit alone at home on Friday night. What was suppose to happen was Rick was going to an annual Bass Fishing Tournament at Lake Hartwell tomorrow and I was going to go walk for A Cure For Lupus with my daughter and one or 2 of my granddaughters, Hope and Isabella. What actually happened. Rick went this afternoon so they wouldn't have to get up in the middle of the night and drive to Hartwell and what else happened is just horrible. The Youth Minister at Sanctuary Baptist Church died. John Powell, apparently a heart attack in his sleep. He was Hope's youth minister, Matt's mentor and my daughter Heather's whole family not to mention her whole church's very wonderful friend, brother in Christ for years. I ache for their loss. So I am praying for them all. Please pray for the Powell family and the church family. The funeral is tomorrow at 3:30 and Heather is singing at Johns funeral. Pray for my granddaughter she is taking this so hard...you know how close youth are to their ministers.... And please throw in a prayer for me too for strength, clarity of mind and pain free joints. I am a nervous wreck I will get either mugged or lost....finding my way down town alone via Marta to Piedmont Park to the Lupus Walk tomorrow afternoon at 3:00... Thank you!

Happy Birthday in Heaven

It mom's first birthday in Heaven.  She was celebrating with dad and her parents, her twin and other brothers and sister, dads parents and brothers and sisters, my 2 brothers and so many more. Here we celebrated at Heathers house like the 7 years before Isabella and mom had their party together. I missed her so...

Dad's birthday is Wednesday.  I know they are rejoicing together.

Blessings

April 22nd. Moms 1st birthday in Heaven....I knew as soon as I woke up...but I thought I could do it...just another day, right?... As we sat Rick drinking coffee, me my Chai tea, Sunday morning, time to get a shower and get ready for church, our conversation turns to a news story that Rick wants to show me...not just any story I discover but one about a special singer, one I was very familiar with. Laura Story. And what song is she singing on this news clip none other than "Blessings". A song that has helped me Deal with my grief over the last few months, this song has helped me keep going and dig in deep when I found out I had lupus...

Here are the lyrics to the song, Blessings,

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise.

Thank you Laura Story!!

So at this point I am blubbering, he is apologizing and I am a mess mentally and physically ( my knees are swollen and stiff and aching), time for church comes and goes, we didn't make it this morning but we had some time to remember. Later as hunger brings us back to reality we grab some lunch, take in a movie I have been wanting to see (The Lucky One)and even manage to get new Nikes for The Lupus walk next weekend. All in all it was a bitter sweet day thanks to my sweet hubby and my Lord and even Laura Story.

And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.  (Philippians 1:6)

A Walk Down Memory Lane

Rick and I walked A Walk Down Memory Lane sponsored by Abbey Hospice in memory of mom. Her birthday is this Sunday and I finally felt I was able to deal with facing this pain I have been holding off...it went well. There were many many people there walking for their love ones as well. They gave us shirts and as we walked there were signs posted for us to read that brought special memories to us. There was a 3/4 mile walk and a 2 mile walk. I had not walked in almost a year and with my Lupus I was not sure if I could do 2 miles so we walked the 3/4 mile, then we walked the 3/4 mile again and part of the 2 mile so I could take pictures of some of the signs. I figure all in all I walked the 2 miles and now I am more motivated to walk the Lupus walk in a week and a half at Piedmont Park. I have raised $310 so far and hope I can raise the other $190 and meet my goal.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  (2 Corinthians 12:9)

I am a "LUPIE"

Why We Walk...

I am a "LUPIE"

My Pain - Is real and it's different everyday
My Fatigue - Does not mean I am lazy
My Rash - Is not bad Hygiene
My Hospital Stays - Are not a spa retreat
My Needle marks - Do not make me an addict
My Forgetfulness - Is not selective memory
My Weight gain - Is not by choice
My Clumsiness - Does not mean I'm intoxicated
My Stress - Is not a bad attitude
MY SMILE - Is my signature and I hope to have it for a very long time.
My Disease is LUPUS and it's my Journey...No cause and No Cure!

Jordan Clark's Poem, I am a "LUPIE"
Jordyn Clark, a 22 year old senior at Savannah State University, was diagnosed with lupus in 2009. As you read her poem, you will be inspired by...

As much as I needed her…. HE wanted me to need HIM…

At our Beth Moore Bible Study on James Wednesday night our Pastors wife, Telesa,  said something that made me have a GOD  moment…She said something to this effect. That “ when we are already going through a storm, going through all we think we can handle and then more is piled on us that is the time to be even closer to God.. Not to step away but to step closer because that is the time Satan can get a foothold in an instant if you let him….”

Here is what God told me Wednesday night but I have to tell you a story for you to understand.

 I have really struggled with the fact that I was diagnosed with Lupus 2 months after my mom died, it was like I didn’t have time to mourn and I was struck with this disease.  It was scary and I wanted to tell my mom. But I couldn’t.  And I ask God why…Why did I sit by her bed 2 months and not know…. I knew I was hurting and I knew something was wrong in fact I had questionable blood work done right before she fell and broke her hip and shoulder and pelvis. I had put it all on hold because I couldn’t leave her.  I had rescheduled my Rheumatologist appointments 2 times and finally one day about 6 weeks into her illness  I made a decision to go ahead and go to my Rheumatologist appointment as much as I hated to leave my mom’s side but I needed something for my joint and muscle pain. Not knowing what was wrong at the time I just thought I was tired from the whole experience of her fall, surgery, Nursing Home, Hospice situation and I never left her side except to get a few hours’ sleep…..  My daughter Heather said she would sit with mom while I went to the appointment…

My appointment was 3:30 pm in Lawrenceville at Dr. Lawrence office (I will never forget this experience!). 

I arrived early hoping to get in early and get back to mom.  Their office closed at 5:00 so it couldn’t be that long right?  When I arrived I explained to the check in lady my mom was in Hospice and I really needed to be here because of pain but I was anxious to get back to her …And so began my wait, as I sat I was hearing comments about someone had been back there for 2 hours…what was taking so long, etc.. At 5:30 pm,(again the office closed at 5:00) I was taken to the back and sat in a room.... I told the nurse I needed to get back to my mom and ask how much longer it would be…She assured me it would not be long….…. At 6:30 pm I was in tears, having never met or even seen this Dr. Lawrence, sobbing and exhausted mentally… I walked up to the front desk, reminded her what I had said when I got there and ask for my co-pay check back…

I walked into the waiting room and there were still many people still waiting, complaining…… I told them “I couldn’t confide in a Dr. that didn’t respect my time any more that this and they shouldn’t either!”  

 I stumbled to the nearly empty parking lot and I drove back to the hospice in tears and yes, I got lost on the way back. (I am in tears right now just remembering the mental torment I went through)…That I took those hours away from being with my mom, for NOTHING….

But God did not want me to know I had Lupus yet…..Because my mom did not need that burden on her death bed… He knew what He was doing even though I didn’t at the time….

 As much as I needed her…. HE wanted me to need HIM… WOW…

Thank you God for showing me this through our James Study, Mercy Triumphs!

2 More Weeks Till Lupus Walk

I was off Friday and Monday and we had a quiet Easter weekend. I did go to the Yellow River Game Ranch with Heather, Bella and Ben on Friday. It was fun.

We had a nice church service and then went to put tulips on mom and dads headstone. Had dinner with friends. .

Continuing to have extreme pain specifically top left thigh muscle and tops of both legs in groin area. Worse when not changing positions for a period of time such as sitting in church, Sunday school, at a meeting today, watching tv at night, sitting at dinner table, sitting in car...I am contemplating calling dr about my concern......this is with all meds....

2 weeks till Lupus walk and the most I have walked is the Yellow River Game Ranch...

April, A Big Month Is Upon Us.....

April, the month for birthdays (Mom and Dads) and Easter and the Walk for Lupus. So far I have only raised $70 and I haven't walked any to prepare. So I have a little work to do. I set my goal at $500, a little high I guess but I hope to raise at least $100 so I can get the shirt:). I am so happy my daughter and 2 of my granddaughters are walking with me.

Lupus updates, although I have been tired and requiring more sleep than normal, I have been feeling pretty good. I have aches and pains but nothing that has kept me down. Most days require a nap when ever possible which is so strange because a few months ago I would of told you I am not a napper, now I can nap at the drop of a hat. But thats ok.

In the last 2 weeks I know 2 ladies that have been diagnosed with Lupus. We have to find a cure. Please help support me as I walk. www.lupusga.org