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Monday, November 25, 2013
Sunday, November 24, 2013
Half Smile
So I will never really know if this will ever be found by anyone, so this blog is mostly a place for my thoughts. It's 11pm and I really should be sleeping, but I am to anxious to sleep. I recently realized and admitted that every night I worry about dying, I relive some portion of the night I almost really died, the after math, other trials that came due to the Lupus, what will happen to my children if I die and the list goes on, and on, and on. It can get so exhausting to play over these events each night. It can sometimes take me hours to get my mind to stop replaying events.
I started seeing a counselor a few months ago, and it was just for anxiety etc. Not specifically anything. But the more I went, the more I realized these things about me, and how that probably wasn't normal to be doing each night. My wonderful counselor after hearing me describe what happens at night suggested that I have PTSD. It had crossed my mind a while back but I brushed it off, thinking, that yeah, I am sure I was affected by the events but not PTSD. He asked me if I knew why it happens at night and not during the day. I said probably because I don't have time to think about it while chasing my kids all day. He then asked me when I was dying, and knew I was dying, what time was it. It was in the night, I was alone and dying. It then clicked for me, and it made sense why each night, as it gets dark my heart begins to beat faster, I feel my chest tighten, and I feel like I am having a hard time breathing. Then all the flashbacks begin. I realized it did fit PTSD. I still have mixed feelings about that diagnosis. Sometimes I think, "yeah I probably do". But then I have times where I think no, I am tough, I have had so many blessings given to me that I CAN'T be traumatized that badly. To be that affected feels as though I am not taking those blessings given to me with enough respect and somehow not being grateful for them. So I don't know what I have, PTSD or what, but I do know that it is very hard to not play back something from that period of my life. There is so much that happened, and things that didn't happen that I wished would have. And even though I know that replaying them out in my mind does me really no good at this present time, I seem to be unable to help it when it decides to come. Some nights are much better than others, and it's those nights that I think that I don't have the PTSD.
It's hard having a life long disease. I think that I started this blog wanting it to be positive, and give a good out look on life with Lupus, but there are hard times. I do smile a lot, and I am blessed beyond words with wonderful children and family, but its hard still. I have many, many times that I feel very alone in this battle. My family loves and supports me, but no one will ever know what it is like to live with Lupus like I have. My experience it unique to me as is every ones experience with Lupus is. Lupus is tailored to the individual, and while we may share similar problems and struggles, its still very unique.
So I will end, and try again to go to sleep, trying not to think about all the what ifs and what has happened and could it happen again. I will try to sleep, and wake up and start another day that is full of great blessings and continue to move forward.
Good Night
I started seeing a counselor a few months ago, and it was just for anxiety etc. Not specifically anything. But the more I went, the more I realized these things about me, and how that probably wasn't normal to be doing each night. My wonderful counselor after hearing me describe what happens at night suggested that I have PTSD. It had crossed my mind a while back but I brushed it off, thinking, that yeah, I am sure I was affected by the events but not PTSD. He asked me if I knew why it happens at night and not during the day. I said probably because I don't have time to think about it while chasing my kids all day. He then asked me when I was dying, and knew I was dying, what time was it. It was in the night, I was alone and dying. It then clicked for me, and it made sense why each night, as it gets dark my heart begins to beat faster, I feel my chest tighten, and I feel like I am having a hard time breathing. Then all the flashbacks begin. I realized it did fit PTSD. I still have mixed feelings about that diagnosis. Sometimes I think, "yeah I probably do". But then I have times where I think no, I am tough, I have had so many blessings given to me that I CAN'T be traumatized that badly. To be that affected feels as though I am not taking those blessings given to me with enough respect and somehow not being grateful for them. So I don't know what I have, PTSD or what, but I do know that it is very hard to not play back something from that period of my life. There is so much that happened, and things that didn't happen that I wished would have. And even though I know that replaying them out in my mind does me really no good at this present time, I seem to be unable to help it when it decides to come. Some nights are much better than others, and it's those nights that I think that I don't have the PTSD.
It's hard having a life long disease. I think that I started this blog wanting it to be positive, and give a good out look on life with Lupus, but there are hard times. I do smile a lot, and I am blessed beyond words with wonderful children and family, but its hard still. I have many, many times that I feel very alone in this battle. My family loves and supports me, but no one will ever know what it is like to live with Lupus like I have. My experience it unique to me as is every ones experience with Lupus is. Lupus is tailored to the individual, and while we may share similar problems and struggles, its still very unique.
So I will end, and try again to go to sleep, trying not to think about all the what ifs and what has happened and could it happen again. I will try to sleep, and wake up and start another day that is full of great blessings and continue to move forward.
Good Night
Saturday, November 2, 2013
The Diagnosis
As I had mentioned, I was 21yrs old when I was diagnosed. I started having random pains in my joints. One day it was my knee, the next my elbow and it just seemed to jump around from joint to joint, until it didn't...it started to stay in the joint and just add another one the next day. Soon I was in so much pain it hurt to lay down, it hurt to stand up, it pretty much hurt to breath, at least that is how it felt. I was out of state in college and I felt a little lost as to what to do. I had a dear friend and roommate drive me back to my home state, and my father met me there. They really hadn't realized how bad the situation was until he saw me that day at the doctors. He pretty much had to carry me to the doctors, and that even hurt me. I was given a very large dose of steroids which helped within hours to make the pain go away. They ran tests and I was able to return to school just two days later. I waited for the diagnosis. I prayed and prayed that whatever it was that God would take it away. I felt I was living right and doing what he would want me to be so I felt that he should be able to remove this trial from me. Well a month passed and I went into the doctor for the diagnosis. He was probably the most unfriendly person I have met. He walked in, spatted out, "Well, it's Lupus". Said some other things, but at that point it was almost an out of body moment, or shock. I remember looking at my mom and she was sobbing, and it just hadn't sunk in what this was all meaning. I drove home in silence with my mom. Both of us really not knowing what to say.
At this point I thought my life was over, I would be dying and everything that I hoped for the future was no longer a possibility. I cried most of the day in my parents home. I wanted to be left alone, and not think. I remember that my father came in and told me that we were going out to dinner. I remember thinking, "Are you crazy, I have been diagnosed with Lupus, and you want to go out to dinner tonight?". I insisted that I was staying and they could go. But my Father, being who he is and wiser than I would ever let him know. :-) dragged me to a Sizzler. I could barely see out of my eyes because they were so puffy from crying all day. I am sure I got some looks from people, but I really couldn't have cared less what others were thinking at that moment. It may seem like a silly and simple thing, going out to dinner and maybe totally not the right time, but it was. It taught me something...life was still continuing on, my life was continuing on. It helped me have the strength to return to school and complete my degree. It was a simple thing my parents did, but very critical in my perspective on fighting this Lupus.
That day I thought my life was over, but learned quickly that yes my life could be over, but I still had a lot of control as to when that would be. And I didn't want my life to be over yet, and still don't so I fight, always fighting. Looking back over these ten years it has been the simple and what seemed to be insignificant efforts of others, and me that really shaped how I have learned to live with Lupus. Having my best friend come over with a hot brownie and ice cream from out favorite restaurant and talking about everything but the Lupus, making me feel I was normal, that life could still be filled with happy moments.
Lupus is a tough diagnosis to take, it is unpredictable and that is scary. But it is possible to live with Lupus and have a fulfilling life. It's possible to live with Lupus and still Smile!
At this point I thought my life was over, I would be dying and everything that I hoped for the future was no longer a possibility. I cried most of the day in my parents home. I wanted to be left alone, and not think. I remember that my father came in and told me that we were going out to dinner. I remember thinking, "Are you crazy, I have been diagnosed with Lupus, and you want to go out to dinner tonight?". I insisted that I was staying and they could go. But my Father, being who he is and wiser than I would ever let him know. :-) dragged me to a Sizzler. I could barely see out of my eyes because they were so puffy from crying all day. I am sure I got some looks from people, but I really couldn't have cared less what others were thinking at that moment. It may seem like a silly and simple thing, going out to dinner and maybe totally not the right time, but it was. It taught me something...life was still continuing on, my life was continuing on. It helped me have the strength to return to school and complete my degree. It was a simple thing my parents did, but very critical in my perspective on fighting this Lupus.
That day I thought my life was over, but learned quickly that yes my life could be over, but I still had a lot of control as to when that would be. And I didn't want my life to be over yet, and still don't so I fight, always fighting. Looking back over these ten years it has been the simple and what seemed to be insignificant efforts of others, and me that really shaped how I have learned to live with Lupus. Having my best friend come over with a hot brownie and ice cream from out favorite restaurant and talking about everything but the Lupus, making me feel I was normal, that life could still be filled with happy moments.
Lupus is a tough diagnosis to take, it is unpredictable and that is scary. But it is possible to live with Lupus and have a fulfilling life. It's possible to live with Lupus and still Smile!
My Purpose
Each day more people are being diagnosed with Lupus, and learning about the great impact that it has on ones self and those that love and care for them. I have had Lupus for almost 10 years, and it's been quite the journey, and continues to still be. When we are presented with a challenge, I hope to gain something from it, grow from it, and help others in similar situations. That is my goal with this blog. Selfishly I know this will be a great thing for me to be able to to articulate my thoughts and insights, but I truly hope that it is able to help others with Lupus, or their families.
A little history on me, I was 21 years old when I was diagnosed. I was very lucky to receive a diagnosis within a month, which I know is not typical. My Lupus for the most part was joint pain, and fatigue. It was manageable, and eventually calmed down for several years. I was lucky enough to find a great guy and we were married in 2007. That is the turning point for me in my life with Lupus. Three months into our marriage I was diagnosed with stage 4 kidney disease and started chemo treatment to try and save my kidneys. Only a few short weeks after that, I began swelling severely and having a difficult time breathing. Soon I found myself waking up in ICU recovering from open heart surgery. My lupus had attacked my Mitral valve and it had to be replaced. Needless to say that is was a shock to wake up to that news. It was a long recovery and quite a trying first year of marriage to say the very least.
Fast forward six years, and I amazingly have two wonderful children and my lupus is under control once again. I have had my share of ups and downs throughout the six years, both physically and emotionally. I have tried just about everything to help my lupus, and some of my greatest successes have been through essential oils. Go figure huh? I have so much to share, and experiences to relate. I hope that as others read this and have similar situations, Lupus or not, that you will gain hope for the future and a knowledge that you are never alone in the process.
Until next time!
A little history on me, I was 21 years old when I was diagnosed. I was very lucky to receive a diagnosis within a month, which I know is not typical. My Lupus for the most part was joint pain, and fatigue. It was manageable, and eventually calmed down for several years. I was lucky enough to find a great guy and we were married in 2007. That is the turning point for me in my life with Lupus. Three months into our marriage I was diagnosed with stage 4 kidney disease and started chemo treatment to try and save my kidneys. Only a few short weeks after that, I began swelling severely and having a difficult time breathing. Soon I found myself waking up in ICU recovering from open heart surgery. My lupus had attacked my Mitral valve and it had to be replaced. Needless to say that is was a shock to wake up to that news. It was a long recovery and quite a trying first year of marriage to say the very least.
Fast forward six years, and I amazingly have two wonderful children and my lupus is under control once again. I have had my share of ups and downs throughout the six years, both physically and emotionally. I have tried just about everything to help my lupus, and some of my greatest successes have been through essential oils. Go figure huh? I have so much to share, and experiences to relate. I hope that as others read this and have similar situations, Lupus or not, that you will gain hope for the future and a knowledge that you are never alone in the process.
Until next time!
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