You Revive Me

His Strength Is PERFECT!

God keeps His promises

 

For no matter how many promises God has made, they are “Yes” in Christ. And so through Him the “Amen” is spoken by us to the glory of God.
(2 Cor. 1:20) NIV.
In a world of uncertainty, our trust is in a faithful God who will always keep His promises.
I continue to trust the promise of God that I am healed.  Recovery from a transplant is not as easy as I thought it would be.  I am thankful that I have been able to put one foot in front of the other day by day I am going to recover.  I am very tired and have been feeling cold this past week. The transplant team assures me that my body is still making adjustments, and it is still early.  I seem to feel better later in the day than when I first get up.  I try hard to stay busy during the day, but am still having to take a nap at some time during the day.  I am happy to answer phone calls, emails, and other means of communication.
I thought it would be a good idea to go back and detail all that has happened leading up to the transplant. According to my medical records I was seen at Boozmanhauf eye clinic for an unexplained optic neuritis in late 2002.  After many examinations locally and Little Rock, it was determined that I needed IV steroids for the inflammation in my eye.  I couldn’t see in my right eye when I went to the doctor to begin with, and that did not change even after the hospital stay.  A week later I was examined by a Neurologist who diagnosed me with MS, scheduled me for a series of test, but said that the treatment for MS is to treat the symptoms as they come up.  At that particular time the only problem I was having was the optic neuritis.  MRI, lumbar puncture, nerve conduction studies all pointed towards MS.  There is not a specific test to confirm MS all other diseases are ruled out and then MS becomes the diagnosis, based on the symptoms.  By this time I had begun having some weird symptoms for example my feet were numb, I was unable to grip anything with my hands, and I felt like there was a band around my waist all the time, it was very uncomfortable.  Another Neurologist saw me and said he was aware of a specific test for NMO, that he thought I should have because of the symptoms, and because more symptoms were coming up even with the medication he’d prescribed for me.  The test was positive for Neuromylitis Optica, (NMO) aka Devics Disease, the doctor told me that this was a very rare disease and that he could not tell me a prognosis, that we would wait to see what course the disease would take.
I did some research and found very little information on NMO.  I remember thinking to myself there is no way I am the only one with this disease, I need to find somebody else who has NMO to talk to.  I prayed and asked the Lord to lead and guide me to help myself, I really felt like the doctor did what he thought he could do and the disease would run its course.  Every time a different symptom came up I found myself really searching for help and answers.  The Mayo Clinic had little information, about treatments, however they did offer suggestions once the disease progress to a certain point.  I prayed and asked God again to direct me because I did not want to get to the point that the Mayo Clinic described to me.  For, a couple of years things seemed to stay the quiet, and God gave me strength to manage the symptoms I had been having.  (I will pick up here next time).

Three Weeks

I’ve been home now from Chicago for three weeks now, after undergoing a stem cell transplant on February 27, a month ago.  I will admit that this is a process that is going to take time to get a routine rhythm going.  My family has covered me as long as they could and now with the help of the Lord I am doing it.  God bless Rida, Kitty, and Mother who put their lives on hold to be sure I could live the best life possible during this transition.  Joshua and Dee unfortunately don’t get off that easy they still have to deal with me daily, they don’t seem to mind that much as long as I am home. 

So much emphasis on infection and safety until there is very little time for me to blog.  I felt like I needed to catch things up so that I don’t feel so overwhelmed when I have the opportunity to blog.  As far as infection goes my orders are to stay away from clinics, hospitals, day care centers, and any other public places where people could be sick.  I cannot be around anyone that is aware that they are ill, or has been ill.  If out in public I wear gloves for my protection, I am not allowed to hug/kiss until my immune system is built up again, so hard because I am a people person, and I work hard at loving people and hugs are a part of my love language (on hold for a little).  I am allowed to go out in public now, however not at peak times when there may be large crowds (Easter service yesterday an exception). I have been encouraged to slowly get back to what a normal routine is for me.  The safety issue is as serious as the infection issue is because of the fragile, weakened state the chemotherapy and the transplant left my body in.  It is a welcomed everyday chore to get up and get myself ready for the day whatever that day holds.  I have found that every day is different than the one before, and I have to take each day for what it is worth. The first week I was home it was all I could do was get used to being home again it seemed like everything was so foreign, my bed was the first wake-up call, I was used to using the rails on the hospital beds to turn from side to side, no rails on my bed here at home slowly, I’ve made some adjustments and am doing fine at home now.  The second week I spent figuring out medication, and reporting my B/P, and P to my doctors who were trying to regulate the medications. This past week, I’ve noticed I get tired very easily, so I take frequent rest breaks.  What is good about the breaks is that I recover quickly.  I have pinpointed the areas that I need work and what I’ve found is my overall body is weak and so I am starting with strengthening my core.  I have been evaluated for o/t and p/t but I know that there is only so much they can do the rest of how well I recover will be determined by what I do.

My overall goal remains the same, to get back on my feet, bring awareness about this disease, and finally set up a foundation in which anyone that needs a particular treatment, and does not have the means there will be means to help them. While going through my process I also hope that my experience will help another person dealing with Devic’s Disease experience a little easier.  I hope to encourage, and inspire others to remain hopeful and to keep searching until there is a cure.

The only way the FDA will approved this and other treatments for Neuromylitis Optica (NMO) aka Devics Disease is if those with the disease are allowed to take part in the research efforts.

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.

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.

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.