“Little Becomes Much”

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http://www.npr.org/2014/11/21/365433685/if-we-left-they-wouldnt-have-nobody

If you haven’t,  please listen to the story above. 

I am so grateful for these young men. No, there wasn’t one of my family members in the facility, but it could have been. Isn’t it something how GOD can use something in your past that the devil meant for evil, to help someone else!?!  Miguel Alvarez talked about how his parents had abandoned him. He remembered how it made him feel. That was the reason he couldn’t just leave the residents like the other employees had.

These men, one hired as a cook and the other as a janitor probably thought they were hired just to do that job, but at just the right time GOD equipped them to do the job of a whole facility from the doctors on down! These men were put there for a purpose.  This wasn’t a job they just happened to get.  GOD had a plan. All they had to do was be willing and able.

You may not be where you think you should be in your life and it is keeping you from doing what GOD wants you to because you don’t feel qualified. Did you know that my GOD is a qualifier! ! GOD doesn’t need your degree our your money in your account! He used a cook and a janitor who helped more people than they probably know. He is waiting to use you in that job that you feel is just a dead beat job and is not going anywhere. Work that job like you own the place! Maybe one day you will!

In all things I have shown you that by working hard in this way we must help the weak and remember the words of the Lord Jesus, how he himself said, ‘It is blessed to give than to receive.
Acts 20:35

The Lord will fulfill his purpose for me; your steadfast love, O Lord, endures forever. Do not forsake the work of your hands.
Psalm 138:8

I can do all things through him who strengthens me.
Philippians 4:13

And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.   Colossians 3:17

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11

Commit your work to the Lord, and your plans will be established. Proverbs 16:3

 

“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 🙂

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“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 🙂

 

 

 

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@brandi_nichell

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“Imagine Me”/”Flaws And All”

Scrolling down my Facebookwall today, I have seen the same picture over and over again.  It is a post baby pic of Kim Kardashin in an ill fitting white bathing suit. I know many of you have seen it as well because it seems every form of media has posted it or is talking about it.  While I admire how quickly she has been able to shed her baby weight and return to her beautiful curvy figure, I can’t help but think about the sabbatical we have had for the past 10-12 months not having to be bombarded by pics of her on  instagram in varying states of undress, and how much I have enjoyed it. She is a beautiful women but geesh! Scrolling further along, I see an article about a young girl that was found in the middle of her crowded high school cafeteria giving oral sex to another male student.  Though these articles would seem to be two unrelated stories, they sadly are very much the same.

I have to admit, throughout my childhood and my teens I didn’t love myself. I liked myself, but I didn’t love myself.  I had body issues, hair issues, daddy issues, clothes, money, boys; all the issues that come with growing up a little brown girl under the California sun.  I really didn’t learn to love myself until I was in college.  For the most part I was comparing myself to the other girls, (who probably had the same insecure issues I had) in my jr. high and high school. It wasn’t the Gwenyth Paltrow’s on the red carpet, or the stunning Beyonce’s entertaining the masses, or the Kim Kardashin’s in every magazine on every shelf in the grocery store check out line. Though  at the time I felt I could never have all the things my classmates possessed, everything they had, or looked like they had was some how obtainable even if I didn’t know that then.  Even in their school yard perfection they still had a zit or two, had lipstick on their teeth, or bad hair days every once in a while.  I was able to see that the “princess of the ball” was sometimes off her A game just like me.  Even though I didn’t love myself, I liked myself a whole bunch.  Liking myself filled in the gaps of my insecurities until I could learn to love who I was.

I think about my nieces and I know that already in their young lives they are already being indoctrinated about what is beautiful and what is not. Unlike me their young minds are already barraged by the flawless perfection of societies idea of beauty. Unlike me, they are not shown bad hair days, zits, or any form of imperfections. All they see are impeccable photos that have been doctored beyond recognition, or the glamorous life of celebrities that is idolized on tv or social media.  It makes me wonder will they ever learn to love themselves.  Will they ever learn to even like themselves?  Will they constantly compare their self worth to an unattainable apparition that doesn’t exist. I pray when they realize that they can’t attain this false perfection they see around them, they don’t look for it, crave it, from other means. I pray they don’t look for that love from a bottle or a drugs altering haze. I pray they don’t look for it in a boy, whose love is conditioned on what she can do for him.  I pray they don’t look for it in an addicted obsession of body dismorphia.  I pray they don’t seek attention using their body as currency. I pray they grow to love themselves and all their imperfections because they are unique, special, wonderful individuals who are carefully and wonderfully made by a perfect all loving GOD.  I want them to grow to love those things that make them different.  I want them to know they are very extraordinary girls and they are loved, because there are so many little girls who have never heard this, and so many women who have yet to believe it. By birthright, you have always been “the princess of the ball”!!

Brandi 🙂

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“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.

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“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

 

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“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!

 

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