My Platform NMO Rare Disease

Saturday, March 16, 2013

Discharged home

So the plan to be discharged Friday was in our favor, my white count was up and everything else was going along as planned.  After the usual morning hospital routine, I told my sister I didn’t feel well.  She came over felt my head and said you may have a temp, she put the nurse light on and my temperature was 101.6, from there it went as high as 103.6, there was no way I was going anywhere, until the fever subsided  
My girls have all had a fever at one time or another and you know they are punie looking, whiney, and you just know they do not feel well.  You do you all can to make it better but fevers do their own thing.  I do not believe I have had a fever that I can recall that made me feel so bad for three days.  They cultured everything they could, however they were unable to find a source for the fever.
We watched online church service, and prayed to All Mighty God that the fever would go away and stay away so we could come home.  God is so faithful; I do not know how people make it without Jesus Acts 17:28 declares that it is in Him we move, in Him we live, in Him we have our being, I cannot, don’t want to do anything without Him. 
Dr. Burt released us Monday we came home Tuesday PTL. The recovery will be long and sometimes difficult, but I got a beautiful card that will serve as my reminder …recovery is a process.  It takes time.  It takes patience.  It takes everything you’ve got and more to get through the process but you will get through.
From start to finish the Lord’s hand has been on this transplant.  From not knowing if I was a candidate, to not having insurance coverage because this has not been FDA approved, each, every obstacle that came up the Lord made provision.
I’d like to say that because of God’s provision this was a piece of cake,  it was not there were some very cloudy days and sleepless nights but I am so glad that I was able to remind myself that Jesus has already bore my sickness and disease, and by His stripes I am healed.  I know that there is purpose for my life and there are those hopeless, helpless ones living with this disease that do not know about a transplant, and if they did they would not have the resources to have the transplant.  From the transplant team point of view without enough of data from actual transplants then there would not be a FDA approval. As I am recovering join me in prayer for God’s direction to be the voice that cry out for Devic’s Disease and other rare Autoimmune Diseases.
Friday, March 8, 2013

Best Day

Transplant Scripture (sent from Randy Cameron)

Philippians 2:27

New International Version (NIV)

27 Indeed he was ill, and almost died. But God had mercy on him, and not on him only but also on me, to spare me sorrow upon sorrow.

I shout every time I confess this word…

+8 day

Able to understand the cycle (refusing to accept it) the fever of unknown source causes the dehydration, drops B/P causing weakness, and then the next three hours recovering.

The pass three days the cycle has been continuous …. There is a time and a season for everything according to Ecclesiastes one cycle today, recovered in about an hour GLORY TO OUR GREAT GOD.

The day was so productive; I was able to shower, and lubricate this covering over my muscles and bones that is most commonly known as skin, so thankful Mary Kay products.

Went to the isolation rehab center and worked for 45 continuous minuets.  I know pretty impressive huh.  Spoke with my Biglil Brother who has a way of letting me be me … he had me laughing which is good free natural medicine. My middle sister called with an update on my brother in law who is recovering from a heart attack and stroke (he is their Music Minister at their church) we had a good visit and I was able to encourage her (I was so pleased that even where I am the Spirit of God can use me) agree with me for his healing Kenneth Rumper Sr.

Another blessing graced my room later Jeni the Transplant Chaplin, she was apologetic about not being here to bless the cells before transplant, I assured her God was totally in control and His divine appointment was best. We talked about how the physical issues will seep into our spiritual being and cause doubt, fear, and a sense of loneliness.  She reminded me of Psalm 23 very comforting. We had to watch my sister’s service online they live feed, and we have also had the privilege of going to our vimeo and our service because there are no Christian channels on the hospital TV. We gave her information, she was thrilled she said many people ask for resources and she has some to give Yay Dave and the Crew.

One more thing up late watching the news last night (thanks to steroids). Remember I am in Chicago (which doesn’t matter news for me ends after the weather no matter where I am) I’m wired so I watch the entire sports from hockey, to basketball, and everything in between, and then the sports guy strings me along he says you want to make sure you come back after the break for an incredible story so now I am talking to the TV to hurry on with their commercials. The story comes on about a women diagnosed with cancer with seven children who wins 20,000 my sister and begin to pray thanking God for His provisions but understand the cost of medical care will quickly consume that 20,000. I lay down to sleep. My Soldier Sista for the Savior Susan called and we go through our chatty routine, I give inside updates she gives me outside updates, and we think ok is there anything else and she says one that blessed me and she starts the sports guy story … I say oh I saw that last night she says well you know who that is I say no she says that is Hutch’s brother … WOW

 This has been the best day since having the transplant and we believe for more of the same.
Wednesday, March 6, 2013

One week Transplant Old

I was made aware that my blog post have not been posting...(spoke about my lack of being techo before), and those post were not saved so let my monster blog marathon begin ... I thought that I'd finish several projects,blog, sort my nicknacks with all the time on hand, nothing could be farther from the truth.  Each and every day has it's own happenings and we are along for the ride.  For example today started with me thinking about Lakeside Baptist Church and my Uncle Chicken singing

Oh, to be “Kept for Jesus!”
Kept, by the power of God;
Kept from the world unspotted,
Treading where Jesus trod.

Oh, to be “Kept for Jesus!”
Lord, at Thy feet I fall;
I would be “nothing, nothing, nothing”;
Thou shall be “all in all.”

Oh, to be “Kept for Jesus!”
Serving as He shall choose;
“Kept” for the Master’s pleasure;
“Kept” for the Master’s use.

Oh, to be “Kept for Jesus!”
Kept from the world apart;
Lowly in mind and spirit,
Gentle and pure in heart.

Oh, to be “Kept for Jesus!”
Oh, to be all His own;
Kept, to be His forever,
Kept, to be His alone!

and looking around seeing the older people crying ... well I did not understand then but I do now what a joy it is to be kept by Jesus. Such a peaceful time, prayed, read my word while waiting on the transplant team spiked a temp that took the entire day to break. Fever comes in at #3, Cytoxan #1, and Neuprigen Injections #2.  After such high temp for so long it is really easy to be completely wiped out I remember feeling this same way two days ago and relied on Isaiah 40:29 that when I am so weak He (my Keeper) will increase my strength.
Transplant team comes in go over the process today is +7 I am one week transplant old so funny I am cracking up right now because a little while ago Joshua called to tell me my AARP membership info came in the mail today. We expect the white count to go up at anytime is what the team say. 
I am so ready for that and my everyday confession is ..
My immune system grows stronger day by day. I speak life to my new system You have given me.  I forbid any confusion in my new system.  The same Spirit that raised Jesus Christ from the dead dwells in me and quickens my immune system with the life and wisdom of God, which guards the life and health of my body in Jesus name.