“Whatever Comes I’ll Be Ready…You Keep Me Steady”

My devotional this morning was about being thankful despite  times of uncertainty and pain when dealing with a chronic illness. You many not be living with a chronic illness, but there are many times of uncertainty and pain that daily creep into your life. It seems impossible to find gratefulness when you are in the bottom of the valley without any possible way of escape in sight; let alone being thankful for the situation itself. It doesn’t feel good  continually living in pain and distress. It doesn’t feel good having to struggle and fight, and to continually lose each and every time. What if I told you that you can be thankful, in the valley, the pain, distress, uncertainty. What if I told you that you can be thankful and grateful for the storm.

It seems crazy! Why would I be thankful for having lupus, and what could I possibly be grateful for? I must be losing it right!?! NOPE!! Not at all!! Reading this devotional this morning was right on time. The Lord has really been showing me how to be thankful for my chronic illness.  If I can learn to be thankful for this horrible illness that has left me in anxiety and depression, pain 24 hours of the day for the past 14 and a half years, took away my independence, my appearance, at times my sanity, safety, and everything I knew to be true, while literally trying to kill me, what else is there really to worry about!! I mean really think about that!! The Lord knew long before today what I would being going through. He knew since the beginning that in May of 2000, I would get sick with a chronic, incurable disease. He already made the provisions for me, and provided me with everything I will need to fight long before there was a battle; long before time knew time existed!!!  Just like me, the Lord knew your tears and pain would come. He knew that we both would make decisions that would bring dishonor to his name, yet he made a way for us before we even existed!!

Yes I have lupus! Yes, sometimes it seems unbearable, painful, and uncertain, but I am thankful!!  My fingers are cramping as I type this, and my knees are aching, as well as every other joint in my withered body, but guess what!?!? I am thankful for it!! When I opened my eyes in pain, that was a sign I was still alive!! When my swollen ankles hit the floor and I limp to the bathroom, I am walking on my own unassisted! God say’s,

“Give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”  1 Thessalonians 5:18

Nothing is too hard for my God! Lupus is not stronger than my GOD!! Your problems are not bigger than my God! Whatever comes I will be ready!! The Lord has already made provisions for me! He will not leave me to fight alone. Even when I don’t understand, and the world is crumbling down all around me, I will be thankful! He knows the answer, for he is the answer!

“You keep me steady when the sky is falling
And I’ll keep steady after You
I’ll carry on when my strength is failing
Take heart ‘cause You’re with me
So let the sun stop, stars drop, whatever comes
I’ll be ready, You keep me steady
You keep me steady” – For King and Country “Steady”

Brandi 🙂

Facebook: www.facebook.com/TheButterflyStitcher

Instagram: @thebutterflystitch

“Jesus Take The Wheel!”

Yesterday, I posted on Facebook that lupus was the best thing that ever happened to me.  Many people didn’t understand how such a horrible disease could  be the best thing that could ever happen . Even my husband looked at me crazy after reading it. It was not a typo! It is absolutely the truth!!

Recently I was talking to a friend that has been in a valley for some time now.  I was sharing with her how GOD allowed me to reach the lowest point in my life so I would let go and totally depend on him. For many years he let me do things my way.  He allowed me to pray to him and ask him to fix problems in my life while not truly believing that he would do it. I had plan A & B covered, and GOD was my plan C. How many of us pray to GOD to fix certain things in our lives, yet we don’t believe that he can do it, so we try to do things our way? I know I have. Despite the many times that I mocked GOD in prayer, disrespected him and spit in his face while telling him what I was going to do, he still loved me. Even in my sin he still loved me! While I smiled and worshiped him in public, I denied him in my heart in private!! Yet, he loved me so much he used lupus to save my life!!

I have an issue with control. I love it and want more of it. I have an issue with trust. It is rarely given, and quickly can be snatched away. The Lord know’s I struggle with both of these. My issues with trust and control were hampering my relationship with him.  I had built my wall up so strong and high that I wasn’t even letting the Lord through it!! He not only broke my walls down, he bulldozed that baby!! He took ALL control from me. I couldn’t even go to the bathroom by myself. I had to depend on strangers to clean me up afterwards. I had to trust that they  would take care of me. My most intimate moments, and basic private human functions had to be attended to by others. There was absolutely nothing under my control. I was flat on my back, and couldn’t do anything but look up.  That is where I found GOD’s love.

Why did it take lupus for me to learn my lesson? Why couldn’t I just surrender all on my own?  I would have saved myself so much time, heartache and pain if I would have let it all go and believe GOD would take care of me. Would I be the person I am today.?Here I am with a chronic disease that has no cure. If I worry or become stressed about anything, I will have a flare up. I live with chronic pain everyday for the past 14 years. There are days I can barely get out of the bed. This has forced me to learn  how  to ask for help. I can’t even  attempt to try to do it all; my body won’t allow me to!

Wow! What a crazy faith walk it has been over the past 14 years. I have seen the Lord perform so many miracles in my life. Things have not come together by luck or happenstance. It was the hand of GOD moving in my life. I have been in the hospital room when the doctors come in,with their faces drawn trying to explain to me that my  tests, and kidney function isn’t looking to good, then come back a few days later to be told that my kidney prognosis is great!! I have seen how the Lord helped the doctors to diagnosis me with lupus within 2 weeks while many other lupies take years and years to get a diagnosis. I have seen the Lord move when I got pregnant after the doctor told me I would never be able to have children due to the chemo making me infertile. I have seen the Lord shut down the words of the first obstetrician I went to when he told me that I would be horribly sick during my pregnancy and my son, if he survived, would be the sickest baby in the nursery. He told me to get an abortion. He then told me I was young and could have more children later. Eight months later, my son was born premature, but with absolutely no health issues!! While pregnant I was the healthiest I had ever been. My kidneys even healed themselves despite having to do the work for two!!  These and many more miracles have truly strengthen my faith. I know longer worry about what tomorrow brings, because I know GOD has already taken care of it.  I checked my account this morning and  my balance will not cover the rest of my bills for the month, but I am not worried at all. Our car is broken down right now, but I am not worried one bit!! He has promised me he would supply all my needs, and he hasn’t failed me yet!

I don’t know GOD’s plans for my future. I don’t know if it is his will to be totally healed, or if this will just be something I have to live with for the rest of my life.  2 Corinthians 12:8-9 says,

“Three times I pleaded with the Lord to take it away from me.  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.”

It wasn’t until I lost all control that I was able to experience GOD’s mighty power! Yes it is sometimes a rough road to travel,  and some days are hard to endure. Yes, frustration exists, and many tears are shed, but I will continue to give him the praise regardless of what may come my way!!!   Through it all, lupus ABSOLUTELY was the best thing that has ever happened to me. I am a walking testimony!! GOD’s GRACE IS SUFFICIENT!!!

Brandi 🙂

 

Facebook: http://www.facebook.com/TheButterflyStitcher

Instagram:  Thebutteflystitch

“How Deep The Father’s Love For Us”

I was talking to a friend not to long ago about my living with lupus, and the subsequent complications due to lupus. Growing up I had a plan for my life. I knew I was going to go to college one day. I planned to become an english teacher, and a part-time journalist.  I would get married  to a wonderful man, have 2 children, a girl named Lillian and a boy named Brandon,  travel the world and retire on some fabulous beachfront property where I would spend my days surrounded by all things that I love. None of my plans involved lupus, however the Lord had other plans for me.

I never planned to end up in Huntsville, Al. I am a Cali girl, from Riverside Ca, and I wanted to attend a state school. I knew that my family would not be able to pay for my education.  Oakwood College  ( now University) was an option, but not necessarily the highest on my list of possible college’s. Oakwood is a small  historically black Seventh Day Adventist school in Alabama. However, regardless of my plans, in the late summer of 1996 I was packed and ready to go to Huntsville.  I would have never imagined what the Lord would allow me to go through.  If I had known I would have run far away from Huntsville and Oakwood, and been unable to handle what the trials he would allow me to go through to save my life.

I grew up in the church. My mom became a Seventh Day Adventist when I was 3 or 4.  I can’t remember exactly when, but I remember her receiveng bible studies in our living room. I remember their was an evangelistic tent effort that happened to be right next door to our home, and I can still hear the sound of the preaching through our windows at night.  Once my mom joined the church, she became very active.  We practically lived at church! I knew right from wrong. I knew bible verses, and could sing all the favorite hymns. I was baptized in my tweens, and thought I knew who GOD was.  The thing is I knew who GOD was, but I didn’t really KNOW him.  I had heard what he had done in the bible, but I couldn’t say I could see what he had done in my everyday life, or those around me.  Even though I “knew” him, I never saw his hand on my life, and how his only plan was to save my life, so he could save my soul.

Fast forward to my senior year of high school. I could have stayed home, and attended a school in the city, but for some reason I was not aware of, I boarded that plan that August of 1996 to a place I wasn’t sure about, and really didn’t have plans to be.  I was traveling far from home, to a place that would become my new home; the place that would prepare me for his show of power in my life.  The “Oakwood Experience” isn’t anything that can really be put into words. It is more than the music or the history.  It is a community of believers that become like family.  It was here that I began to “know” who GOD was.  I craved to see him work in my life.  I have many testimonies of how he provided a way when there wasn’t any.  There were times I would get calls to show up for pictures for scholarship winners. I was too  afraid to ask to many questions in fear they would think they had the wrong person. One time I did ask another recipent and was told they all applied for their scholarships in the financial aid office. I knew I had not been to the financial aid office to apply for any type of scholarship! Actually out of all the scholarships I received I NEVER applied for them.  I wasn’t a super fantastic student. I surely wasn’t one they would hand out scholarships to without me applying first. Many times I would be told that I needed to go home because I didn’t have money to clear.  I knew that was not an option. I didn’t have any money to get home, so I had no choice but to stay and pray the Lord made a way. Sometimes I only ate once a day because that is all I had unless a friend would smuggle food out of the cafe for me.  One day I was in desperate need of money to buy books.  I had gone a long time without buying books. I did all I could by writing excellent notes, and borrowing from my friends.  It worked out because we were pretty much taking the same classes.  The problem came when I started taking classes for my major. Most of my friends were biology majors not English or education majors.  I  remember one time I was $40 dollars short of what I needed for a book. I was walking to my bible class. Usually at this time I was never alone.  There were always other students either going to, or coming from class.  This day I didn’t even notice I was alone. I saw something out of the corner of my eye blow across my feet.  I looked down to see 2 crisp $20 bills. You would think all of these miraclous miracles would be enough for me, but it wasn’t.

I started dating my husband in 1998. I had been in a year long relationship, and wasn’t really looking to be in another relationship.  I decided that I would spend that time getting to know the Lord better and focus on my school work.  I REALLY wasn’t checking for him!! He of  course has his version of the story that of course is a half truth, just in case it ever happens to come up in your conversation with him.  Really I wasn’t, but the Lord knew who I needed and when I would need it.  We dated for a while, and soon he became enthralled with my beauty and intellegence and couldn’t help himself. He proposed and I said yes!  The spring of 2000 I was taking 17 hours, working 2 jobs and surviving on the bear minimum. I am a worrier. I have been this way my whole life. If their is a problem, I will drive myself crazy wondering  the how, when and why. I need to find some way to fix it.  I worry about not being able to fix it. I worry about what will happen if it is not. I need to take care of it or nobody else will.  I worry about things that are clearly beyond my control. I hate to even depend on people because I feel I can do it all myself. It was no difference doing all I was doing, and trying to plan a wedding on a limited budget  for the date of August 13, 2000. I was doing a lot at the time. I even started working out.  I thought this was the reason I was so sore. I thought I was just really out of shape.  This went on for a couple of weeks until I came down with what I thought was the flu right before finals; the worst possible time.

I was in the hospital for almost 2 weeks before they finally diagnosed me with lupus. Up to this point I had never expirenced  any health issues this serious.  Here I was, flat on my back with no way of fixing anything; my health, school work, keeping my job, let alone planning a wedding.  Even though so many times GOD had made a way for me I still had to have my own back up plan just in case he decided he didn’t want to bless me. Though I had grown so much in my spiritual walk, I hadn’t totally surrendred to him, and still didn’t tottally trust him with my life.  It is crazy to look back now and not clearly see how many times the Lord had his hand on my life. I never noticed how GOD had snatched me from the web the devil thought he had me in. I mean he had set up things so perfectly to take me out even back then. I could be a drug addicted prostitute, locked up in jail, and could have died in my sin never knowing that GOD loved me so much!! The enime had fixed the deck to give me just the right amount of sadness, and to put the right people in my path  he thought he needed to excecute his plan. He even introduced me to a pimp and had him come over to my home, and made sure I was in his for a whole summer, yet he never propositioned me, or noticed the sadness in my eyes. Later I found out he had got a hold of one of the neighborhood girls who was also my friend.   We were both 10 at the time.  He probably was  betting that I would just give up, or blame GOD for my lupus diagnosis. He probably thought he had finally won, however, GOD used lupus to save my life!

Lupus is a debilitating disease. It slowly steals away everything you thought to be true. It steals your confidence, your independence, and everything you thought you had in a matter of weeks. I began to physically change.  I didn’t know who I was looking at in the mirror. My body would not listen to what I wanted it to do. Then I find out that lupus flares are related to stress.  This means, if  I worry to much, or try and do to much on my own I am in danger of having a lupus flare. Did you hear me? Me, the worrier , who always had a back up plan, who always was trying to find my own way out of situations and do things all on my own was now diagnosed with a chronic disease that has NO cure !! If I resorted to my comfort zone of doing what I needed to do and making my own plans regardless of what the Lord had in mind, was now in a situation where I had no choice but turn it ALL over to him. I had to trust him!!  I needed to learn that because he was planning to take me through some steep dark valleys, and if I didn’t learn to trust him tottally, I would have never made it out. I wouldn’t know he was a healer and a deliverer. I also wouldn’t know he had a way when I had none. I didn’t know that he would allow me to be his miracle. I also believe that if I had not been diagnosed so many years ago, in the spiritual state I was in, I wouldn’t have been ready for what he planned to do in my  life. Yes, lupus has taken so much from my life, and caused me so much pain, but I couldn’t say that if it did not happen I would have surrendered to him.  He had to strip me of all I knew. It wasn’t until then I was able to see clearly how he had his hand in every aspect of my life, holding back the devils snare. I could clearly see the times  he stepped in to let it not be. Yes, I continue to carry this burden for the past 14 years, but it does not equal what he sacraficed for me. I know he has always loved me, and even when I spit in his face, he doesn’t give up on me.  He did what he had to do to speak to me. He did what he had to do to save me.  I am now attentive, and forever grateful.

Brandi 🙂

 

 

 

Find me at:

http://www.facebook.com/thebutterflystitcher

Instagram: @thebutterflystitch
@brandi_nichell

Email: thebutterflystitcher@gmail.com

“I Will Survive…I’ve got all my life to live!”

Today wasn’t a good day. I woke up with another cold (number 5 so far this year). Because of my anti-rejection drugs I have a decreased immune system.  Every time I get sick it sends my body into a tail spin. I peeled myself out of the bed this morning.  Sometimes I wish I could go back to the days where a cold was just a cold and nothing else.  It is so frustrating!!!  It has been 14 years living with this life altering disease and it never gives me a day off; no weekends or holidays. I live with chronic pain 24 hours a day.  I have become accustomed to it. It is like a house guest that refuses to leave. Most people would never know what I go through day to day unless I told them.  I have learned to put a smile on my face and keep it moving.  There is no need to dwell on what is, if there is nothing you can do about it. Don’t get me wrong. There are days when it is just too much.There are days when I ask God why? There are days when I am angry that I can’t do what I want to. There are days I am angry that people don’t understand my limitations or my pain. Sometimes I am pleading God to give me just one day to be who I think I am in my head.

I have learned it is ok to be upset or angry in the valley.  It is suppose to be uncomfortable.  I am  not suppose to like it.  Sometimes it hurts.  Sometimes I will be sad, and wonder if I will every have a reason to smile.  If I never had valley moments I would never appreciate the good times. I would never be grateful for my good days if I never had a bad one. I would never know that GOD is a healer and a refuge in my time of trouble. Yes, I woke up in pain, but I WOKE UP. Someone else lived their last day.God is so good that even when I lose, I win! He has already given me what I need to make it through the day. Some how I have been given a strength I never new I had.  It is nothing I could have done on my own. It is all God. What I lack he fills in the gap, and renews my strength. He is the reason I can keep going. Though it may not always seem like it, God has already given me what I need to be VICTORIOUS!!

“Have you not known? Have you not heard?

The Lord is the everlasting God,

the Creator of the ends of the earth.

He does not faint or grow weary;

his understanding is unsearchable.

 He gives power to the faint,

and to him who has no might he increases strength.

 Even youths shall faint and be weary,

and young men shall fall exhausted;

 but they who wait for the Lord shall renew their strength;

they shall mount up with wings like eagles;

they shall run and not be weary;

they shall walk and not faint.”

-Isaiah 40:28-31

“But now thus says the Lord,
he who created you, O Jacob,
    he who formed you, O Israel:
“Fear not, for I have redeemed you;
    I have called you by name, you are mine.
 When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
    and the flame shall not consume you.
 For I am the Lord your God,
    the Holy One of Israel, your Saviour.”

-Isaiah 43:1-3

Brandi 🙂

Recently I gave Shared my testimony for “They Overcame By”. Watch and be encouraged.

“Put It On The Altar!”

Last week I wrote about my new health crisis. (“My Soul Is Anchord” https://lupieloop.wordpress.com/2013/09/09/)  My labs showed increased protein in my urine.  After a kidney biopsy, I learned that I have significant scarring on my transplant kidney. I was told I had irreversible damage. They still didn’t know why, or what was attacking my kidney. Though I have been concerned I have been prayerfully walking in faith. I have had so many people praying on my behalf.  I have been prepared to do what was necessary on my part to keep rejection at bay.  I have been saying that this storm was my testimony before my testimony. Well here is the testimony!!

I returned to UAB this morning. I was prepared for what ever the dr had to say, because no matter what, I believed that in the Lord’s time it would be worked out.  I was happy to see Dr. Gaston walk in.  You can tell he has been doing this job for a long time. He thoroughly explains what’s going on in clear terms.  I believe the Lord wanted me to fully understand what was going on.  He began with small talk and a review of what happened last week, then he busted out the lap top with the results of the labs for this week. Now, please listen closely.  He said that my protein levels are going down.  I had a wonderful creatinine level of .09 (0.4-1.3).  Then he dropped the real deal news. THERE WERE NO ANTIBODIES PRESENT!!!  Basically there is nothing in my body attacking my kidneys!! NOTHING!! ZILCH!!!  He continued on to say that he thinks by November all of my levels should be back to normal and my prognosis looks good!  Even some of the scarring should go away!! PRAISE GOD!!

I have said this before. I do not know why the Lord chose me to walk this journey. All I know is that over the past 13 years, the Lord has brought me to this place where I learned to live with FEARLESS FAITH!! I have been through so much, and each and every time I go through a storm I always come out better on the other side.  I have learned to praise in my weakness, in pain, and through my tears.  He has never left me!  He has done so much that I have no fear of storms that may  pass, because I know I believe in a life guard that can walk on water!!  I know that what ever he promised me in his word he will deliver. It isn’t always in my time. It is in the time of a GOD that created time!!

There are so many people going through just life, and they are barely staying afloat.  Finances are low, and jobs now days are scarce.  I know. I am living it too.  All I can tell you is you are GOD’S child.  He knows exactly what you need. He may give you just enough to be able to look up and gasp for air before you go down again.  This is not the time to give up!! It is time to lay on your back, look up and learn to float until your change comes!!! He is grooming you so you can walk in  FEARLESS FAITH!!  The bible say’s,

“Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken.”  Psalm 55:22

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.”  Philippians 4:6

“Cast all your anxiety on him because he cares for you.”  1 Peter 5:7

You have the perfect set up, “The Dream Team”,  if only you will believe on him.  Jesus is our lawyer, the Holy Spirit is co council and God all mighty  is the Judge.  Don’t you know you have won before you were even taken to trial?!?!? You can never lose whether it is about a job, finances, health, or hurts and pains.  The trial is over and the judges decision was  in your favor!!  It is time that we become FEARLESS FAITH Christians.  Oh what more does the Lord have in store for us if we only asked, believing he could?  There would be so much, we wouldn’t have room enough to receive it!!  (Malachi 3:10) Thank you GOD for giving me my testimony before the testimony and teaching me to live my life as a FEARLESS FAITH Christian!!

” Now faith is being sure of what we hope for and certain of what we do not see.”  Hebrews 11:1 

“Jesus turned and saw her. “Take heart, daughter,” he said, “your faith has healed you.” And the woman was healed at that moment.”  Matthew 9:22

“Then Jesus said to her, “Woman, you have great faith! Your request is granted.” And her daughter was healed at that moment.”  Matthew 15:28

“Jesus replied, “Truly I tell you, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, ‘Go, throw yourself into the sea,’ and it will be done. If you believe, you will receive whatever you ask for in prayer.”  Matthew 21:21-22

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, o him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”  Ephesians 3:20-21

“He sent out his word and healed them; he rescued them from the grave. Let them give thanks to the LORD for his unfailing love and his wonderful deeds for mankind.”  Psalm 107:21-33

“Praise the LORD, my soul, and forget not all his benefits, who forgives all your sins and heals all your diseases,who redeems your life from the pit and crowns you with love and compassion,who satisfies your desires with good things so that your youth is renewed like the eagle’s. The LORD works righteousness and justice for all the oppressed.”  Psalm 103:2-6

“The righteous person may have many troubles, but the LORD delivers him from them all; he protects all his bones, not one of them will be broken.”  Psalm 34:19-20

“Lord my God, I called to you for help and you healed me. You, Lord, brought me up from the realm of the dead;  you spared me from going down to the pit. Sing the praises of the Lord, you his faithful people;  praise his holy name.”  Psalm 30:2-4

“Then they cried to the Lord in their trouble, and he saved them from their distress; he sent out his word and healed them, and delivered them from destruction. Let them thank the Lord for his steadfast love, for his wonderful works to humankind.”  Psalm 107:19-21

“You shall worship the Lord your God, and I will bless your bread and your water; and I will take sickness away from among you.”  Exodus 23:25

‘O Lord my God, I cried to you for help, and you have healed me.”  Psalm 30:2

 

God’s greatness is unmeasurable ,

his grace immense,

and his love everlasting!

Brandi 🙂

* Thanks to all of you that have thought of me and prayed on my behalf.

Check out my fb page at: www.facebook.com/thebutterflystitcher

“My Soul Is Anchored”

If someone were to ask how i feel right now I would say concerned, but steadfast. Today was definitely a test of faith, but I still believe the Lord is in control. I had a kidney biopsy on my 7-year-old transplant kidney today.  Though I feel fine, my labs show there is a considerable amount of protein in my urine.  The doctors have not been able to find out why.  The biopsy shows that I have significant scarring and is beginning to show early signs of possible rejection.  The scarring is irreversible . They have decided to increase some of my anit-rejection meds and add a new medication in hopes of slowing down anything that may be causing it and try to prolong the kidney as long as possible. The positives are though my kidney isn’t ideal, they say that my function is over 60% and is functioning very well to have such significant scarring. If for what ever reason it drops down to 20% I will be put back on the transplant list.  The other positive news is that my lupus is still in remission and was not the reason the kidney isn’t functioning as it should be.  They want me to return next Wednesday to see how my body is taking the new milligram changes, and the new drug that they are prescribing to decrease the protein.

I listened to all they had to say, and their advice, but inside I was praying.  I have been here before.  I have been in a hospital bed too many times with a diagnosis that seems to leave me in the deepest and steepest valley, and each time I pray and ask the Lord if he chooses not to heal me today, just allow me to make it to see tomorrow. It has been 13 years and I am still here! They do not know my story. They don’t know how many times the Lord has sustained me, carried and kept me.  They do not know I was in a wheel chair for 2 years unable to walk.  They do not know how my son shouldn’t even be alive.  They do not know!!! I feel like Noah right now.  I have built this huge ship, loaded it with the animals, and now I am looking out the window with nothing but water as far as my eye’s can see.  My family has made it through the storm, though uncomfortable there has been no casualties. I have sent out the raven, and now the dove, and I am waiting for the olive branch.  He will send me that olive branch. It may not be today, or tomorrow, but it will be done!! Until then I will take my medication as prescribed and remain in prayer. This is  my testimony before my testimony!! Whether he heals my kidney today, or if I must hold on until he provides a new kidney, my freshly plucked olive branch is already on the way!

Continue to keep me in prayer.

http://www.youtube.com/watch?v=9B8RCeJ4hm4

 

Check out my fb page at: www.facebook.com/thebutterflystitcher

“It wasn’t easy, but it was worth it!”

I have had several people, including doctors that have told me that I am a very good patient, and that I deal with having a chronic illness pretty well. I am very meticulous about my medication regimen.  I know what medication I take, the milligrams and why.  I ask questions before procedures, and I am not afraid to tell a doctor no if I am not comfortable with their method of treatment.  I have been through a lot over the last 13 years, but by no means was I always this way. It wasn’t that long ago I was in the dark with no flash light.  I have learned to adjust to the “darkness” out of necessity.  My only hope and goal was to LIVE!

Lupus is an unforgiving disease.  You get a diagnosis on Monday, and by Wednesday you barely recognize the person in the mirror. My face became more round  and changed into what is known as the “moon face” with flattened  facial features. Hunger seems to never subside, and it wasn’t long before my  figure started to resemble that of a  spider with a rounded abdomen with arms and legs sticking out. All of this was due to inflamation and  the high doses of steroids.  It was hard to prevent because I was in so much pain just walk to the bathroom, let alone trying to walk laps on some bodies track.  Just the thought of it would make me want to cuss someone out!!

The changes are very hard to deal with. It is no wonder that many Lupies struggle with depression.  How would you feel if you woke up one day and your life was TOTALLY changed. One day you are able to walk, the next day you can’t. One day you can fit you favorite pair of jeans, and the next day  you can’t pull them up past your thighs. One day you can take a shower on your own, then the next day all you can do is sit there while someone you just met earlier that morning is giving you a sponge bath.  It is hard to all take in.  I get a little misty just remembering those dark days.

After much sadness, depression, anger and then acceptance, it was time to deal with my “new normal”. I may never look like my pre-lupus self ever again, but I learned how to work with what I have. My clothes may be a bigger size, and I may not be able to wear my favorite dress again, but I can still rock an outfit with the perfect shoes and accessories. My hair fell out, but my husband hooked me up with a tight cut until my hair was able to grow back. I can’t run the miles that I use too, but I can flop around the pool and still burn a few calories without feeling like I am about to die.  I had to learn I can still be me. Lupus can’t change that. No matter what diagnosis I was given, it couldn’t change my heart, my dreams or my desires.  I can enjoy the same things in life, it just has to be executed differently.  Once I realized that, I could deal with the diagnosis of a disease that may never be cured.  I didn’t get to this point over night.  It was, and still is a fight everyday to not allow myself to become lost in depression and hopelessness, but I have to keep on living, or keep on dying.  With an illness where control is relinquished without consultation, it is the one thing I have control of.

The other thing that I could have control over was my medical care. I researched all I could about lupus.  I learned about my medications and asked why they were prescribed.  To make sure I am at my best, I take meds and I don’t miss a dosage. I don’t put a pill in my mouth that I do not know what it is. When I am not feeling my best, I make sure if I have a busy day, I give my body adequate time to recover so I don’t  spend a week on strong pain meds trying to catch up on my pain. I keep up with new treatments and ways to make my life easier.  I had to become my own advocate. I am the only one who can know how I am feeling.  Sometimes it is a hit, others may be a miss, but every decision is an informed one.  It is talked about and decided by me and my doctors.  I don’t have to agree to procedures that I am not comfortable with just because the doctor told me to.  After all, it is my body, not theirs.

Everyday isn’t always filled with smiles.  I still have some days where I feel a little overwhelmed with the frustration of a body that won’t allow me to do what my mind wants too.  Depression still knocks on my door, and sometimes it is kicked opened without permission, but I know longer feel like I have a hopeless future where I am just existing. Lupus is not my death sentence.  It is up to me whether to keep on living, or to keep on dying.  I choose to live!

 

Check out my fb page at: www.facebook.com/thebutterflystitcher

“Today My Life Begins”

I celebrated my 6th “Kidneyversary” today (5/10).  Six years ago I received a call from UAB that they had a kidney waiting for me and I needed to get there as soon as I could.  I remember like it was yesterday.  I was in the process of doing my nightly routine of hooking myself up to my dialysis machine.  My husband worked nights at the time.  The kids were sound asleep.  It was around 10pm and I had waited to the absolute last-minute to hook myself up.  Though I had a long cord I would still be tethered to it for the next 10 hours or so. Like any other night I was getting everything prepared so that I could lay down, watch a little t.v. while my life line, the dialysis machine did all the work.  I had done it so many times over the past 2 1/2 years I could do it on auto pilot.  For what ever reason that night I didn’t feel pressured to do it right at the stroke of 10pm.  I didn’t have any appointments in the morning so I would be ok if I wasn’t able to disconnect until 10 or 11  in the morning.

The phone rang. I just knew it was my husband calling because he had forgotten to do something.  Instead a male voice that was not my husbands, was telling me they had found a kidney match for me.  I couldn’t hardly say anything but “Thank you Jesus”, and to answer yes I would be able to get to the hospital.  I dialed my husbands number.  Of course this would be the night he wouldn’t answer his phone.  I called again, then again, and I still didn’t get an answer.  I called a friend who possibly could have been with him.  Still I got no answer!! One of the most important nights of my life and I couldn’t get my dang husband on the phone!!!!  I called my in-laws to let them know what was going on, then my best friend so that I could have someone to keep the boys.  Finally my husband called back.  I was so excited my brain was moving faster than my mouth, so I had to actually take a few deep breaths to be able to tell him what was going on.  He was home 20 minutes later.  The boys were sleep walking to my in-laws car while we stood in a circle holding hands praying for traveling mercies, and that my surgery would go well.  I packed my bag into the car. I knew I had forgotten something or things, but I was to excited to pack.

It seemed we were the only one’s on the road that night which ended up being a good thing. That night had to have been the darkest and most foggy night of the year.  I don’t know how fast my husband was driving, but he definitely had his foot on the gas.  I think I prayed all the way there!  I wasn’t sure the of the window of time I actually had to get there.  I knew from past transplant education classes I wouldn’t be the only one there getting crossed matched.  I could be one of a handful of people called that night for the same exact kidneys!!  We felt an urgency to get there before my competition even though tests, not time would prove the winners.

I arrived at the hospital and was placed in the room I would be in for the night.  It was painted white and was one of the most sterile looking hospital rooms I had ever been in.They asked all the normal questions they ask you when you are admitted into the hospital.  I had repeated these questions so many times over the years I didn’t even have to think about it. Do you have any allergies? What meds are you on? Do you know the dosage? Who is your emergency contact? Do you have a living will or a power of attorney? Yada, Yada, Yada.  Who could think about those things when in just a few hours I was going to be wheeled into surgery.  Of course I didn’t sleep. I couldn’t sleep. I had a mix of excitement, nervousness, anticipation, and a handful of other emotions you have when you find out that your life is going to be changed forever!  I laid there in the dark thinking about how wonderful a gift I was going to be given.  The calls from my family in California had died down for the night.  I expected it to resume in the morning; if not on my phone it definitely would be Cornell’s.  My family was overjoyed with the news.  They had been worrying about me from a far.  Sometimes the distance makes any illness worse than it really is.  I could only guess that everyone thought I had one leg in the grave with one eye closed.  For at least an hour I stared at the ugly floral picture on the wall. Who decorates hospital rooms? They always have the worst art work.  They do nothing to help “uplift your spirit”.  Tonight I didn’t need it. It seemed every 30 minutes I would say a prayer of thanks.  I may have been saying the same thing over and over again.  I can’t really remember, but I was extremely grateful.  I found myself doing it for possibly the 15th time that night.  My mind began to wander and I began thinking.  While we were rejoicing, somewhere in this hospital a family was in pain and grieving the lost of their, son, brother, uncle, father.  Someone’s loved one had to die so that I could live.  I didn’t know how to feel about this at the time; sometimes I still don’t.

When the time came I was rolled down  several long cold sterile hallways.  We finally reached the operating room.  Earlier I had been given something to help me relax.  Others say it causes them to not remember a thing.  It seems to not have the same effect on  me.  I always remember everything.  This time I was grateful.  I wanted to remember this moment for the rest of my life.  I never wanted to forget this miracle that GOD allowed me to take part in. There aren’t usually that many smiles in the room, but this time there were more than a few.  It felt like when a baby is born.  There is always an anticipation of a brand new life being brought into the world, that has all the opportunities dreams can hold.  I glanced to my right and saw one of the surgeon’s bathing a bright pink healthy kidney in a saline bath.  Just like a baby, it is crazy how something so small can have such a large impact on your life.  As they prepared me to go under I began to count down trying to keep my eye on my little pink miracle. I looked as long as I could. Not only was I looking at my blessing, I was looking at the beginning of the rest of my life.

Brandi 🙂

 

Check out my fb page at: www.facebook.com/thebutterflystitcher

“Free Falling”/”Dr. Feel Good”

  Twelve years later you think I would know my limitations when it comes to lupus.  I spent a good portion of yesterday soaking up ultra violet rays.  Because it was a good reason I am not kicking myself today despite spending most of the day in the bed.  My sister-in-law just celebrated her 40th birthday.  The festivities were concluded yesterday with a surprise.  She went skydiving!!!!  I won’t ever be able to do anything remotely like that because of my blood pressure, but even if that wasn’t an issue for me I am sure my heart would jump out the plane before I did!!!  Watching her was worth the extra “rest” I received today.  I will just live through her jump!! That’s about how close I will come to doing it myself!!!

****************************************************************************************************************************************

I have been doing something the past 2 months that I haven’t really talked about here.  I have started to go to the chiropractor.   We had inquired about it in ’09 but decided against it at the time.  We returned this year to find our bodies at seriously deteriorate since then.  We took x-rays of our spines and reviewed them with Dr. O (our chiropractor).  In that time the lower part of my spine began to bow out and was showing beginning signs of scoliosis.  The nerves in that part of my spine controls my sex organs such as my uterus and ovaries. Since ’09 and this year I have had my uterus removed, found out I have endometriosis that can not be treated, and also had an ovary removed.  I keep thinking that if we had decided to continue care in ’09 I wouldn’t have had to deal with these issues and the surgeries that I have.

When we first started chiropractic care, I was still on my cane from the hip replacement ( I talk about it in my blog entry entitled “A day in the life…With My Super Cane” https://lupieloop.wordpress.com/2011/04/17/a-day-in-the-life/).  I just couldn’t get rid of that thing.  I had been using the cane since March 2011, and was becoming very frustrated with the fact that I was still using it.  More than anything, this was the real reason I wanted to go to the chiropractor.  I began to feel like I would  always have to use the cane and I wasn’t comfortable with that.  After three adjustments I was off my cane!!! Even though I have bad days due to the lupus, I have had a good share of “more than good” days.  Some do not believe in chiropractic car, even friends of mine that are doctors.  All I know is It has helped me tremendously!!  All I can go on is how it has improved my quality of life.  Since I am the expert on my body that is all that counts!!

Check out my fb page at: www.facebook.com/thebutterflystitcher

“If You Can Use Anything Lord You Can Use Me”

It has been a while since I have written a blog entry.  I have been trying to convience myself that I didn’t have anything to say, when I have had so much to say.  My aunt passed away last month. Yes, death has shown up on our families door step again.  I wasn’t able to go the funeral due to my recent surgery, so I really haven’t fully grieved yet.  I was sitting alone in my room this morning and  I actually  heard myself say I need to call Aunt Jackie and see how she is doing.   I had forgotten that she had passed away.  My eye’s began to well up when I realized I wouldn’t be able to call her ever again.  A week before she died I finally erased all the messages she left on my phone.  I didn’t know that would be the last time I ever would hear her voice again.

Sometimes I hate writing because it forces me to feel when I don’t always want to feel.  Sometimes living so far from my family (I am in Alabama and the rest of my family lives in California) in away shelters me from a lot.  It is kind of out of sight, out of mind.  The only time I am real with myself is when I write.  This is why it took forever for me to finally sit down and write about having lupus.  I hated being sick, and watching how this illness was slowly but surely taking my life away from me.   Talking or writing about being sick, while I was acutually sick didn’t make me feel any better.  Truthfully I ran from it.  I guess I felt Lupus didn’t deserve my attention because of what it had done to me. Maybe If I would have been brave enough, you probably would have seen me on the shelves at Barne’s & Nobles by now.

I thank GOD, even though I don’t always use it, for an avenue where my voice my ideas, experiences and feelings can be shared with others. I am often told how my blog has helped so many people. The truth is, it has helped me just as much.  I pray that my words will be able to reach who he feels needs to hear it, at the time they need to hear it.  I ran away from it long enough.  I am learning to do better. Lord use me as you will.

Stay tuned.

Brandi 🙂