“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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“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 🙂

 

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“Free Falling”/”Dr. Feel Good”

Image Detail  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!!!

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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!!

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“I Will Always Love YOU!”

Candy Hearts Clip ArtA friend called me this morning to let me know she found her birth mother.  I am so excited for her!  I wish I could be there to witness the reunion, 36 years in the making.  Two people that have been thinking and searching for each other have finally been reunited. The birth mother would return to the agency to find her every year until they gave her the impression that the child that she gave up so many years ago was possibly dead.  I can’t imagine what she felt when she heard her long-lost daughter on the other end of the telephone, actually alive,  who had also been looking for her.  What a major change in my friend’s life. What a major change in the life of her birth family.

I have been thinking about my friend all day today. I’m on pins and needles by the phone waiting for her call to tell me how everything went.  While waiting I have started to think about how much the LORD loves us, and how we have become separated from him.  We have lived our lives far away from his will, yet he continues, year after year, day after day, minute after minute to get our attention.  We know he is there, but we continue to go on with our life-like he is not.  We feel we are so lost, and that we are to far from him his will to return.  Even still he continues to call us.  The bible say’s,

Romans 8:37-39 “No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.”

This means that no matter what we do, where we go, what we say, not even death, will EVER will separate us from GOD’S love.  We can never go to far where he can not save us!! Isn’t that wonderful to know that we have a heavenly father that has an everlasting, unconditional love for us. How many times has he dispatched our guardian angel to protect us from harm just so that we may have one more day, minute, second, to seek him and be saved? GOD wants to make a change in our lives.  He died so that we all would be free. He loves us so much that everyday he holds back the clock so that all can be saved before his return. He loves you/me to much to let you/me remain lost.   On that cross on Calvary he was thinking of you, he was thinking of me. Oh how he loves us!!!!

John 3:16  For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.

Romans 5:8 but God shows his love for us in that while we were still sinners, Christ died for us.

Galatians 2:20 I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God. who loved me and gave himself for me.

Ephesians 2:4-5 But God, being rich in mercy, because of the great love with which he loved us, evenwhen we were dead in our trespasses, made us alive together with Christ— by grace you have been saved—

Psalm 86:15 But you, O Lord, are a God merciful and gracious, slow to anger and abounding in steadfast love and faithfulness.

Proverbs 8:17 I love those who love me, and those who seek me diligently find me.

Jeremiah 29:11 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.

Zephaniah 3:17 The LORD your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exalt over you with loud singing.

 

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“Three Times A Lady” (Happy Birthday To You!!!)


Today she would have been 81. It doesn’t seem like it has been a whole year since I saw her last.  We threw her  a grand surprise party, and I will have memories of it…of her, for the rest of my life.  For some reason I thought she would live forever.  She was 80 years young, and even sick she could run circles around me.  She had a quick wit, and a come back for everything. She was hilarious too!! I will never forget the conversation about “German Shepard Cake”, or my mom having a “Blue Bird” phone.  I remember a conversation she and I had just a week or so before she passed.  My mom is often hard to get a hold of.  I would call and leave messages and sometimes won’t hear from her until 2 weeks later.  She was having the same problem.  She said she was going to have someone call her and tell her that she missed her funeral.  She was the best with the dry sarcastic humor.

Vegas was her playground. She could hang with the best.  It seemed like she turned into the Energizer Bunny. She didn’t need a reason to go, and turned every holiday into a Vegas Holiday.  If it wasn’t Vegas, it was a Morango holiday.  You wouldn’t even know she was gone until she would roll into the house early in the morning.

She loved her family very much!! Though she may not have said it, her actions showed it.  She left behind a legacy, 4 daughters,  26 grand children, 40 great grandchildren and one great great grandchildren.  She will be missed but never forgotten. Happy Birthday Grandma Constance!!! Can’t wait to see you at the SAVIOR’S feet.  Oh what a reunion that will be!!!

One Great Day

Yet we must not forget
we believe in an everlasting hope.
One that conquers all pain,
And heals all wounds.
He raised Lazarus from the dead
And himself from the tomb.
With all power he rose again,
Proclaiming his promise of return.

Oh will you be ready,
When he returns and cracks the sky,
When demons are stifled and death itself will die?
Where hurts will be forgotten
And disappointments will be no more.
Loved one’s will be reunited
Some day on that distant shore.
His promises will all be reviled,
No more sorrow, loss, no more worry or pain,
With a loud cry,
The dead in Christ will rise
And the rest will meet them in the sky.

Oh what a joyous day,
When we all see him face to face.
Yes, we have hope to see our loved one’s again,
On that earth made new time will never end.

Until then I am getting ready,
For that wonderful place beyond the sky,
When years are but an instance,
With him forever we will abide
His grace was sufficient,

His promises were true
His glories I see,
His mercies anew.
One day we will all be with him
Oh what a reunion that will be“When we all get to heaven ,
We will sing and shout the victory”.

-Brandi Watts

Copyright © 2012, All rights reserved by author

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Constance Marie Clark-Daniels-Clemons

April 29, 1931-September 24, 2011

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

Clip art licensed from the Clip Art Gallery on DiscoverySchool.com

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 🙂