On The Journey #SpeakingOfLupus : Many things went through my thoughts that day. What If? It’s #Lupus? But the peace of God was with me

Blog from July 31, 2007

  • Lupus Issue

         This blog is the continuation from
         my Biopsy Issues on the 24th of 2007…
        
         Seven days had past.
         It was Tuesday the 31st of July 2001. I received a phone call from the kidney doctor’s nurse. She said that the doctor wanted to see me on August 1, 2001. Many things went through my thoughts that day. What if ? But the peace of God was with me.

         That day came. It was one of the worst days of my life. I received the bad report of having Acute Lupus Nephritis IV (SLE). Some of you may be thinking, What is Lupus? Lupus is one of many disorder of the immune system know as autoimmune disease. There are different types and stages of Lupus. The Lupus I had was almost full.  It was serious. (Systemic Lupus Erythematosus.)

    The kidney doctor explain to me that Lupus is like the opposite of aids. My explanation…it’s a civil war going on inside a person’s body. What’s suppose to be on the good side in protecting the body turn against and fights parts of the body that it’s designed to protect.

    When I heard that report that I had Lupus, I could not cry. I believe that the Spirit of the Lord had to have been with me. The doctor explain the procedure of what I would have to go through. I could lose all my hair and it would grow back. I could not respond to what I was hearing. I was not in shock.

    Back to my testimony…I had to make a decision…I needed to be hospitalized for two days. I had to start chemotherapy for 6 months. The kidney doctor set up all what was necessary for what I needed. I agreed to check in the hospital that night.

    First, I had to take care of some business before checking into the hospital. As I was packaging my suit case, I had thoughts of What if?  I did not know how I was going to pay for the hospital bills so forth. I was worried. Then a thought came to me and said. “Remember, I paid the price for your healing”. This voice brought comfort to my soul.

    There was some point after this time, I did cry. I got the comfort of the Holy Spirit that every thing was going to be alright. What was on my mind next… to go to Wal Mart. I needed to go shopping so that my brothers would have some food in the house while I was away.

    My brother and I went shopping. When we got there I was headed to see a person who worked there. He was a Word of Lifer. We sung in the choir together. I can remember the expression on his face when I saw him. He was on the phone and was looking at me. I motioned to him as though I told him to come here.

    When I spoke to him. I told him what was going on. I wanted him to tell Pastor Eric, Pastor Brian and Peri that I was going to be in the hospital for a few days and that I had Lupus. This friends said that he would tell them. I went about to do my shopping. I had to walk slow.I was in a lot of pain. I had trouble breathing if I walked fast.

    After we got all my shopping, we went home to put up the food. Then I was finishing getting all what I plan to take to the hospital. My two sisters took me there. I wanted to check as late as possible. It was about the 9 PM hour. I went through all the procedures that was needed…

    On my first night there, one of my sisters stayed with me. This night in the hospital started off unusual. Not too long after I go there, I was hungry and wanted a sandwich. As I was waiting, I started to itch. I though that I was allergic to something. The nurse gave me some medicine through the IV that was in my arm.

    The nurse said that I should not have had any reaction to what she gave me. I was itching up a storm. So the nurse gave me something to stop the itching. Yeah, it did and it also made me very very sleepy. My sisters told me that I was saying some silly things. I don’t recall saying too much. I was so sleepy. All I recall waking up the next morning.

    The next day, I was to take my first chemo. Every thing was set to go for my treatment. The chemo lasted from about 3 to 4 hours. The largest dose was first chemo. Then things begin to change during that day. I can not recall when I notice a different in my condition. More blood work was done.

    The doctor said that I was responding very well to the chemo. I was not having any side effects. Thursday went very good. Then came the third day.  I wake up about 6 AM high in the spirit on that Friday, August the 3rd of 2001.

    That morning I saw the nurse there, I told him that I had a lot of energy. He said what I was taking I could have ran around the hospital building a couple of times. I had some powerful medicine injected into me. I was so high with full of energy.

    The doctor came and saw how I was doing. I ask him questions. He notice a change in me as well. I talk a lot more. The doctor signed me out and through all the paper work, it was time for me to go. It was about the 4 PM hour.

    As one of my brothers was wheeling me out, I saw Pastor Eric on the way out of the emergency room doors. I told my brother to hurry up, I wanted to talk that man. We caught up with Pastor E. I told him that I will see him tonight in church. Then I got out of the wheel chair and into my sister’s van.

    It was Friday, I had to get my medicine and get myself ready for church by 6:30 PM. And I did. I was so happy to go to church that day. I had ask the kidney doctor could I go to church. He said yes, as long I would keep a distant from people with colds, babies and so forth sickness.

    Yeah, I had a lot of energy. I seem to had a clearer thinking pattern too. I was seeing much better. Things appeared much brighter and the colors were beautiful. This chemo seem to have brought life back into me. A friend told me it sounded like I had a transfusion of life that came from God into my being.

    Through the months that followed I made more improvements. In about a month’s time I had lost about 30 pounds. It was mostly fluid build up. I lost more weight because of the chemo too. I was shrinking. I was at the point to where I needed to gain some weight.

    I cannot recall how much medication I was taking at that time. It was too much for me. January 12, 2002 was the sixth month of chemotherapy. I was glad that it was. I kept believing that what I had went through was working. I believe that I was healed.

    Through out the 6 months of chemo, I prayed and sought God earnestly. I surrounded myself in a faith atmosphere. I read and listened to the whole Book of Psalm. I confessed healing scriptures. But most important I praised and worshipped God.

    On February 4, 2002, I had my follow up visit to see the kidney doctor. He talk about  the chemo treatments and the results. I had been seeing the doctor once a month. I had to take blood work a week before every treatment to check my white blood cell count. I could not have a cold or fever when I took the chemo.

    But on the 4th of February 2002, the doctor looked at the test results. He said Do I claim victory over Lupus? I said YEAH!  I had all joy about the test results. I had improved a lot over the months.

    The strangest thing happened to me after I claimed victory over Lupus. The days that followed,  I caught the flu. I had to miss Friday Night church. It was Faith Life Weekend. Yeah, I was depressed and VERY MAD too. But I made it to the Sunday Night Gathering.


    I want to sum this all up… and than take you back to the year 2003. First I had no pain not to far after my first chemo in August of 2001. I became pain free  within days but the swelling  took a while and was gone with in two months.

    I have not been on any medication for Lupus since September / November of 2004. I have been doing good. I take 2 vitamin pills and an aspirin a day. As for my medical bills. I made arrangement to pay off all my hospital bills and so forth. I paid my last bill off in 2005.


    I will go back to the year 2003.. During the summertime something began to happen to me again but in a new way. I had pain but I did not know what was causing it. Yeah, I started to sleep back in my recliner in July and August.  But by October – December of 2003 the pain grew worst.

    In January of 2004, I had a kidney doctor’s appointment. I told him about what was going on. He subscribed me some pain pills. They seem to have helped out but up to a point. I had been noticing that my left foot was turning black again. In February, I was concern about it and call the kidney doctor’s nurse.

    On February 9th of 2004, I called the nurse, I told her about my foot. She thought that I may have had a blood clot. She told me to go to the emergency room. So, I had my sister in law take me there.

    The ER visit lasted about 5 hours. They ran test, checked my heart, lungs and so forth. The test results was that the Lupus had reoccurred. At first the doctor wanted to kept me over night. My first response was. “I did not bring my Bible.” I did not have to stay in the hospital over night. I had to make an appointment to see the kidney doctor for follow up.

    I had the follow up with the doctor about a month later. He did not want me to take the kidney biopsy until the was the right time. When ever that meant. My family was concern that the doctor took so long in ordering the kidney biopsy.

    The day came a day before my birthday, April 7, 2004. I went through the procedure again with a different doctor. He was explaining to me that I was an expert at this. I said I don’t want to be. I had a harder time this time around with this kidney biopsy. I was very mad that the Lupus came back. I did not want to tell people about it.

    In February of 2004, not to far after I claimed the victory over Lupus, I had something in my spirit trying to give me fear. The thought of Lupus was going to return. That thought had been there but I spoke back to it. By His stripes I am healed. At times the thought of Lupus comes to my thinking. Even doctors speak that to me that it will return.

    Back to my biopsy. I had to wait 7 days for the results of the test. It came on April 13, 2004. Yes The bad report of Lupus.  I made arrangement to have 6 more chemotherapy treatments….On the morning of April 14, 2004, I woke up in my recliner. I was talking with God.

    I spoke to God with tear in my eyes saying “I did not know how much more I can take of this”. I was speaking of the pain that I was in . In the quiet of the still moments of that morning, I heard a voice tell me to stop breathing.

    And so I did. As I held my breathe, I felt something. What was it? there was NO Pain. For that moment of holding my breathe I had comfort. The peace of God had surrounded me. I believe that God was with me and that I needed to hang on.

    My two sisters were with me again to take me to the hospital. I did not use the wheel chair to where I had to go….I walked very slowly into the hospital in pain and out of breath. What more could happen this time? I don’t what to share that ordeal… I will say that I did have Chemo that day. I did make it home. Thank You Jesus.

    A normal treatment time including check in and check out would last around 4 1/2- 6 1/2 hours each in 2004. Some of the times the treatment times were not normal. The last chemo that I have had was in Sept of 2004. I have been off all mediations for Lupus since September /November of 2004. I thank God for bringing me through.

    During the 2nd round of chemo for 6 months, I did experience some side effects. In June of 2004, I had dry eyes and redness because of the medication that I was on. It appeared as though I had been crying. My eyes were so blood shot red.

    In September of 2004: Test Results: Positive for Lupus…. with no symptoms of Lupus. I came to this conclusion. A positive negative on Lupus does not mean that I have Lupus. It’s been about 3 years since my last chemo. Still I am on no medication for Lupus. I still have a positive test results for Lupus with no symptoms of Lupus.

    I am living life the best way that I can. There are times when I need take it easy. I rest from time to time. I try to reduce my stress level and not to worry as much. I try to not to over do things. I try to keep alert to what attacks my body. I keep track of unexplained rashes or pains that come and won’t leave. In all what had attacked my body has left…

    I read up on Lupus for the knowledge reason. I try to eat right and stay out of the sun as much as possible. I was on the internet on day. I can across a website that had a wristband. The wristband had this words on it that I like ….LIFE WITHOUT LUPUS. I wear this orange wristband as a testimony and reminder that I’m living life without Lupus.

    You can learn more about Lupus at www.lupus.org  www.intotheloop.org

    There are times in life when we don’t know what to do when we receive that bad report. We need to remember that God is with us in all that we do. Lord, help us to remember that You are with us always. Amen!

    I have had these words with me since May 8, 1998. I will leave you with these thoughts. “Whatever you hear, Remember, that I (God) will always be with you to help you and guide you through.”

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About Susan

Follower of Jesus Christ, Worshiper, Caregiver, Love Searching Family History, Lupus Warrior: On Twitter , Facebook ~ Journal on Xanga under the username of Journaling_Susan
This entry was posted in Lupus, Questions, ReflectionsPast, Testimonies, Thoughts. Bookmark the permalink.

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