Thursday, May 10, 2012
What World Lupus day & Lupus Awareness Month mean to me
A few weeks ago I shared my story to women who have known me for years. I thought the fact that I had Lupus wouldn't suprise them since I don't hide it. But, it surprised many. I was disappointed in myself for not sharing more about Lupus with others and the more I thought about it the more I realized that I was, but the platform I was using wasn't for everyone and I don't walk around with a billboard announcing it. Instead I use social media.
I realize I'm quiet on facebook about it. I use twitter to vent about lupus, and even then I block people who know me in real life. I keep a blog, but would prefer not to know if people I know read it. Why? Because I like to vent. And because I don't want to be defined by this disease. You maybe saying to yourself "but I would never do that", but you do, you just don't know it.
Today is World Lupus Day. A day to raise awareness. A day to educate someone who may or may not have had an opportunity in the past to learn what Lupus means.
Don't feel sorry for me, that maybe the worse thing you can say. I am not sorry. This is my story, this is a part of me. And today I choose to stand up to Lupus and tell it to back off. Today I choose to raise awareness because the more people that know the better chances of a cure being found in my lifetime! So today I URGE you to share something about Lupus somewhere, somehow. Put it on your facebook status, encourage your friends to particapate in "Put On Purple" next week DO SOMETHING! No more Dr. House jokes, let's get rid of this once and so no one else has to deal with this!
Wednesday, April 18, 2012
Put on Purple for Lupus
On May 18th the Lupus Foundation of America is hosting a "Put on Purple for Lupus" event. The goal is to get people to wear purple to raise awareness for Lupus.
I am going to have a contest... So here are the rules:
Wear purple on the 18th and post a photo on Facebook or Twitter (Tag me! I have to see it!)
Get others to do this (Have them tag both you & me so I can keep track of who did it because of your efforts)
Get a Celebrity to wear purple and get 5 extra entries (Local celebrities count too!!)
Get your company to sponsor this event and get 3 extra entries.
If you need more information, posters or something to get the ball rolling with your comany you can email me or comment below and I will help you out. (Email: lewisdca at msn.com)
The prize is a $100 PF Changs Gift Card. So dig out that purple and join in!!
PS- Here is the Facebook event: https://www.facebook.com/#!/events/205471922889558/ or comment below and let me know you will join us!
Frustration
I have been playing with this post in my head for a few weeks now. But this weekend really set off my frustrations.
I had made plans for the weekend, no more than a "normal" person could handle. My 9th Benlysta infusion was on Friday (a week late). I left wrok early and went home to take a nap so I was ready for what was ahead of me. That is really when my frustration hit the roof.
By Sunday I was so exhausted and in so much pain I could barely deal with it. I want to be able to live my life. I want to be able to make plans and follow through. I want to not have to worry about flaring any more.
Sunday I started a flare. My first one in months and this maybe the most discouraging one. What can I say. I haven't had one and I was proud of that. I got through Sunday doing all that was on my list (yep, pushed myself). And then Monday morning came and I WENT TO THE GYM.... what is the world was I thinking. When did I get into this I can do it all no matter what mentality?
And the real surprise... I over did it at the gym. I hurt so bad I can hardly walk (even two days later). Sitting down or standing up is the worse! I've heard the comments of "no pain, no gain", "go back to the gym and work those muscles again it will help", "if your sore stretch".
These comments drive me INSANE. My body isn't a normal body. My body doesn't heal like others. Pain is a bad thing.
Why do I do this to myself?
Why do I think that any drug will make me "normal"?
Why do I expect Benlysta to make is all go away?
The flare has died down, no rash on my face (my neck & back are not so lucky). The chest pains are lessing. But I don't know if that is because my focus is on the fact that the squats I was doing with 25# killed my legs.
Time for me to stop expecting that I will feel better. Time for me to go back to listening to my body and accepting what is dealt to me.
I had made plans for the weekend, no more than a "normal" person could handle. My 9th Benlysta infusion was on Friday (a week late). I left wrok early and went home to take a nap so I was ready for what was ahead of me. That is really when my frustration hit the roof.
By Sunday I was so exhausted and in so much pain I could barely deal with it. I want to be able to live my life. I want to be able to make plans and follow through. I want to not have to worry about flaring any more.
Sunday I started a flare. My first one in months and this maybe the most discouraging one. What can I say. I haven't had one and I was proud of that. I got through Sunday doing all that was on my list (yep, pushed myself). And then Monday morning came and I WENT TO THE GYM.... what is the world was I thinking. When did I get into this I can do it all no matter what mentality?
And the real surprise... I over did it at the gym. I hurt so bad I can hardly walk (even two days later). Sitting down or standing up is the worse! I've heard the comments of "no pain, no gain", "go back to the gym and work those muscles again it will help", "if your sore stretch".
These comments drive me INSANE. My body isn't a normal body. My body doesn't heal like others. Pain is a bad thing.
Why do I do this to myself?
Why do I think that any drug will make me "normal"?
Why do I expect Benlysta to make is all go away?
The flare has died down, no rash on my face (my neck & back are not so lucky). The chest pains are lessing. But I don't know if that is because my focus is on the fact that the squats I was doing with 25# killed my legs.
Time for me to stop expecting that I will feel better. Time for me to go back to listening to my body and accepting what is dealt to me.
Tuesday, March 27, 2012
Update
Not much new to update on my end. Wait, I take that back. I have been putting off posting for so long I haven't give you the latest update... so here goes.
Last month I learned that my Iron levels were seriously low. So much that they were considering stopping the benlysta if I couldn't get them back up. I am taking Iron supplements a few times a week. They make me itch like crazy so I don't like to take them.
Friday I go in for a procedure that will hopefully stop my mentral cycle so my iron levels don't drop. I hope that works because stopping the Benlysta is not something I want to do.
In other news, I was watching one of the new talk shows last week with my husband and it was on ADD/ADHD and my husband kept trying to convince me that I have it. So now I am contemplating testing for that. The only thing stopping me is the idea of another medication. But the promise of feeling organized and being able to finally finish something would be amazing. I'll keep you updated on that!
Last month I learned that my Iron levels were seriously low. So much that they were considering stopping the benlysta if I couldn't get them back up. I am taking Iron supplements a few times a week. They make me itch like crazy so I don't like to take them.
Friday I go in for a procedure that will hopefully stop my mentral cycle so my iron levels don't drop. I hope that works because stopping the Benlysta is not something I want to do.
In other news, I was watching one of the new talk shows last week with my husband and it was on ADD/ADHD and my husband kept trying to convince me that I have it. So now I am contemplating testing for that. The only thing stopping me is the idea of another medication. But the promise of feeling organized and being able to finally finish something would be amazing. I'll keep you updated on that!
Tuesday, February 28, 2012
My take on the Royal Pains Lupus Story Line
I am a big fan of the show "Royal Pains" on the USA Network. I was behind a couple of weeks when the show aired where the character with Lupus died, but I saw many posts from others in the Lupus community that were upset that they had shown a character with Lupus die. So here is my take:
As I watched the show (the story line was approx 5 episodes long), I was happy to see a Lupus story line that didn't use Lupus as a joke or something that was so mysterious they only explained it with severe exhaustion and a rash across the face.
I watched as the character heard the news, and dismissed it as if it was nothing. It was interesting to watch as it went through the episodes where he didn't really listen to his doctors, or ignored the care his friends wanted to give him. We have all been there, right? We get the news that we have this disease and we say that we can ignore it. We see our friends start to look at us differently and we tell them that we are fine when we aren't. We ignore the treatment our doctor is suggesting because it isn't really that bad.
I will admit that when the character died, I cried. It was so hard to watch. To sit and think "I have what he has". But I am glad that USA chose to show a side of Lupus that many other platforms don't. Yes the majority of Lupus patients will die of a Lupus complication. Yes, we will be hospitalized at some point. So let's show the world. If we are going to raise awareness let's do it right. I really think House has played a worse roll in raising awareness for Lupus than Royal pains did.
I will also admit that I laid awake for a long time afterwards disturbed by what I saw. My husband was with me as we watched it and he was really a rock for me at that point.
Sometimes reality is hard, but you know what, it's reality. And if we don't face what is ahead of us our lives maybe drastically changed because we didn't plan ahead (Or do that treatment we weren't prepaired to accept).
As I watched the show (the story line was approx 5 episodes long), I was happy to see a Lupus story line that didn't use Lupus as a joke or something that was so mysterious they only explained it with severe exhaustion and a rash across the face.
I watched as the character heard the news, and dismissed it as if it was nothing. It was interesting to watch as it went through the episodes where he didn't really listen to his doctors, or ignored the care his friends wanted to give him. We have all been there, right? We get the news that we have this disease and we say that we can ignore it. We see our friends start to look at us differently and we tell them that we are fine when we aren't. We ignore the treatment our doctor is suggesting because it isn't really that bad.
I will admit that when the character died, I cried. It was so hard to watch. To sit and think "I have what he has". But I am glad that USA chose to show a side of Lupus that many other platforms don't. Yes the majority of Lupus patients will die of a Lupus complication. Yes, we will be hospitalized at some point. So let's show the world. If we are going to raise awareness let's do it right. I really think House has played a worse roll in raising awareness for Lupus than Royal pains did.
I will also admit that I laid awake for a long time afterwards disturbed by what I saw. My husband was with me as we watched it and he was really a rock for me at that point.
Sometimes reality is hard, but you know what, it's reality. And if we don't face what is ahead of us our lives maybe drastically changed because we didn't plan ahead (Or do that treatment we weren't prepaired to accept).
Wednesday, February 15, 2012
Lupus and Genetics (Guest Blogger)
Written by Jenna Walters
Lupus is a disease where the body’s immune system attacks its own healthy tissue, causing inflammation and damage to the skin, kidneys, lungs, heart and blood. A normal, healthy immune system functions as a defense against viruses and bacteria, however, Lupus confuses the system so that it is unable to distinguish between healthy tissue and antigens. Lupus is prevalent in those of northern European descent, blacks and particularly in women aged 15 to 45.
Is Lupus Linked to Genetics?
Leading experts believe that genetics is a definite factor in the development of Lupus. The basic theory is people with Lupus often have a close relative with the disease, while a small percentage of children who are born to parents with the disease will inherit it. Furthermore, studies have shown genetic makeup plays a role in the disease, as Identical twins are more likely to be at risk for Lupus than fraternal twins are.
The Role of Genetic Research
Researchers have identified a number of genes that are associated with Lupus in women and continue to make breakthroughs with further studies for isolating other genes that are likely to cause the disease. Technology has enabled researchers to examine more closely the genetics of various ethnic groups and the way in which other factors as onset and complications of Lupus are predetermined by genetic variances.
In the future, scientists envision specific genetic clues that will reveal which conditions a patient is more likely to be at risk for as well as the correlation between Lupus genes and other autoimmune diseases. Much like a plethora of other diseases, such as peritoneal mesothelioma, there is no known cure for Lupus, though genetic research teams will soon be able to develop effective strategies for treating the disease and preventing systematic damage with debilitating complications.
Treating Lupus
Anti-inflammatories or NSAIDs and corticosteroids are commonly used drugs for controlling mild or moderate Lupus symptoms, while immunosuppressive medications are recommended for severe cases. In addition to drugs, doctors advise patients to take care of themselves to reduce the severity of symptoms by engaging in a healthy lifestyle with regular exercise, a balanced diet, protection from direct sunlight and reduction of stress.
Jenna Walters is a recent college graduate and aspiring writer interested in health and wellness. She is especially interested in touching people’s lives through her writing. Jenna also enjoys kayaking, hiking, and reading.
Lupus is a disease where the body’s immune system attacks its own healthy tissue, causing inflammation and damage to the skin, kidneys, lungs, heart and blood. A normal, healthy immune system functions as a defense against viruses and bacteria, however, Lupus confuses the system so that it is unable to distinguish between healthy tissue and antigens. Lupus is prevalent in those of northern European descent, blacks and particularly in women aged 15 to 45.
Is Lupus Linked to Genetics?
Leading experts believe that genetics is a definite factor in the development of Lupus. The basic theory is people with Lupus often have a close relative with the disease, while a small percentage of children who are born to parents with the disease will inherit it. Furthermore, studies have shown genetic makeup plays a role in the disease, as Identical twins are more likely to be at risk for Lupus than fraternal twins are.
The Role of Genetic Research
Researchers have identified a number of genes that are associated with Lupus in women and continue to make breakthroughs with further studies for isolating other genes that are likely to cause the disease. Technology has enabled researchers to examine more closely the genetics of various ethnic groups and the way in which other factors as onset and complications of Lupus are predetermined by genetic variances.
In the future, scientists envision specific genetic clues that will reveal which conditions a patient is more likely to be at risk for as well as the correlation between Lupus genes and other autoimmune diseases. Much like a plethora of other diseases, such as peritoneal mesothelioma, there is no known cure for Lupus, though genetic research teams will soon be able to develop effective strategies for treating the disease and preventing systematic damage with debilitating complications.
Treating Lupus
Anti-inflammatories or NSAIDs and corticosteroids are commonly used drugs for controlling mild or moderate Lupus symptoms, while immunosuppressive medications are recommended for severe cases. In addition to drugs, doctors advise patients to take care of themselves to reduce the severity of symptoms by engaging in a healthy lifestyle with regular exercise, a balanced diet, protection from direct sunlight and reduction of stress.
Jenna Walters is a recent college graduate and aspiring writer interested in health and wellness. She is especially interested in touching people’s lives through her writing. Jenna also enjoys kayaking, hiking, and reading.
Thursday, January 26, 2012
Today's devotion email
I get an email every day from Rest Ministries- Chronic Illness and Pain Support. I do my best to read them every day as well as one day of devotions out of the book "Mosiac Moments: Devotionals for the Chronically Ill. And I reflect on them through out the day.
One I read several months ago talked about leaning on God for physical strength, this is something I ask God to show me every day. I lean on him for emotional strength most of the time, but I don't understand how to lean on him for physical strength.
I wanted to share this with you today because today's email hit home. Hit me right upside the head. So here it is:
"As he went along, he saw a man blind from birth. His disciples ask Him, ‘Rabbi who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the work of God might be displayed in his life.’” (John 9: 1-3)
One dear-lady on one of the prayer forums I visit requested prayer for her church and a member of this church. This church-member suffers from Multiple Chemical Sensitivities, one of the illnesses we refer to as an “invisible illness” because we can not actually see the results of the damage this illness can cause. Since there is little known about this disorder, the church members took it upon themselves to intervene and try to heal this member in their own way.
Rather than offering support and prayer, they offered her what they assumed was a “sure-fire”cure.
They felt that this lady was not “physically” ill as she had said but rather suffering from sin in her life. They offered her a book that has chemicals on it to help her overcome her problems. The idea is basically that the more she smells the chemicals in this book, the more she will realize that her illness is and has been all in her imagination.
It always breaks my heart when others pass judgment on those who are in pain. . .
Well-meaning church-members assume they have the answers.
Well-meaning friends offer their cures, remedies and advice.
Well-meaning family members don’t understand why we are in pain.
Soon, we find ourselves questioning our life and illness and wondering if sin has been the reason we suffer so. In John chapter nine, we see a similar situation. The disciples saw a blind man. This blind man had suffered all of his life. The disciples ask Jesus who had sinned, him or his parents that he might have such an affliction. Jesus replied neither had sinned.
You see, it does not please God that we suffer, The Lord desires only the best for us, but the Lord can see past our pain in this temporary life to the eternal gain we will someday receive. This man’s weakness was displaying his spiritual strength, by relying on the Lord to work through him.God’s grace was the power for this blind man to endure his burden. He was strengthened as he relied on the strength of the Lord in his life. God’s powerful grace is more real to us in our sufferings. God’s glory could be demonstrated by working through the human weakness.
I know that when my pain is deep and intense and I am so troubled, despaired and alone, I would like to have an interceding friend who is concerned enough to pray for me and with me.
I would like a friend who would listen and understand.
I have that friend today in Jesus.
He is a friend I can always turn to.
He understands me through and through.
What kind of a friend are you today?
Can you intercede for another in pain? Perhaps you need prayer and understanding today in your own life. Remember precious one, you are so loved today and you are not alone. The Lord does understand and He knows your pain.
Dear Lord: Thank You for reminding us it is not our fault that we suffer so. Please help us to forgive ourselves and take away any guilt that is misplaced. You demonstrated in Your Word that this world offers pain because the world is flawed, but that we as individuals are not at fault when illness strikes. We can be blessed and assured that you understand the pain we are in and we are grateful to find any relief through You and Your Word! Thank you, Lord. Amen.
About the author:
Deborah Farmer suffers daily from a few of those invisible illnesses. She desires that everyone in pain today feel the loving arms of a Savior who understands and loves them. Deborah offers her prayers and hugs to you today!
You can now read this on your Kindle. Find out more at http://TodaysDevotionOnKindle.com
Have you ever been hurt by a well-meaning person who offered a quick cure or solution to your physical ailments? Did you hurt about it even more than your loved ones would have expected? How have you used this experience to respond differently when you are encouraging another person who is suffering?
The text I put in bold really spoke to me. I have been in pain and despair this week and the one thing I didn't look to was God. I had friends offer their ear, but that just didn't seem like enough. I turned to chocolate and didn't get my answers. So today I am committed to turning to God, focusing on Him to guide me through.
If you don't believe in God or are unsure. Contact me. Leaning on Him through my 12 year battle with Lupus has gotten me through some low times. Sure sometimes I need a smack upside the head to remeber He is there. But He is. He understands, He loves me and He puts people in my life to see me through everything.
One I read several months ago talked about leaning on God for physical strength, this is something I ask God to show me every day. I lean on him for emotional strength most of the time, but I don't understand how to lean on him for physical strength.
I wanted to share this with you today because today's email hit home. Hit me right upside the head. So here it is:
"As he went along, he saw a man blind from birth. His disciples ask Him, ‘Rabbi who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the work of God might be displayed in his life.’” (John 9: 1-3)
One dear-lady on one of the prayer forums I visit requested prayer for her church and a member of this church. This church-member suffers from Multiple Chemical Sensitivities, one of the illnesses we refer to as an “invisible illness” because we can not actually see the results of the damage this illness can cause. Since there is little known about this disorder, the church members took it upon themselves to intervene and try to heal this member in their own way.
Rather than offering support and prayer, they offered her what they assumed was a “sure-fire”cure.
They felt that this lady was not “physically” ill as she had said but rather suffering from sin in her life. They offered her a book that has chemicals on it to help her overcome her problems. The idea is basically that the more she smells the chemicals in this book, the more she will realize that her illness is and has been all in her imagination.
It always breaks my heart when others pass judgment on those who are in pain. . .
Well-meaning church-members assume they have the answers.
Well-meaning friends offer their cures, remedies and advice.
Well-meaning family members don’t understand why we are in pain.
Soon, we find ourselves questioning our life and illness and wondering if sin has been the reason we suffer so. In John chapter nine, we see a similar situation. The disciples saw a blind man. This blind man had suffered all of his life. The disciples ask Jesus who had sinned, him or his parents that he might have such an affliction. Jesus replied neither had sinned.
You see, it does not please God that we suffer, The Lord desires only the best for us, but the Lord can see past our pain in this temporary life to the eternal gain we will someday receive. This man’s weakness was displaying his spiritual strength, by relying on the Lord to work through him.God’s grace was the power for this blind man to endure his burden. He was strengthened as he relied on the strength of the Lord in his life. God’s powerful grace is more real to us in our sufferings. God’s glory could be demonstrated by working through the human weakness.
I know that when my pain is deep and intense and I am so troubled, despaired and alone, I would like to have an interceding friend who is concerned enough to pray for me and with me.
I would like a friend who would listen and understand.
I have that friend today in Jesus.
He is a friend I can always turn to.
He understands me through and through.
What kind of a friend are you today?
Can you intercede for another in pain? Perhaps you need prayer and understanding today in your own life. Remember precious one, you are so loved today and you are not alone. The Lord does understand and He knows your pain.
Dear Lord: Thank You for reminding us it is not our fault that we suffer so. Please help us to forgive ourselves and take away any guilt that is misplaced. You demonstrated in Your Word that this world offers pain because the world is flawed, but that we as individuals are not at fault when illness strikes. We can be blessed and assured that you understand the pain we are in and we are grateful to find any relief through You and Your Word! Thank you, Lord. Amen.
About the author:
Deborah Farmer suffers daily from a few of those invisible illnesses. She desires that everyone in pain today feel the loving arms of a Savior who understands and loves them. Deborah offers her prayers and hugs to you today!
You can now read this on your Kindle. Find out more at http://TodaysDevotionOnKindle.com
Have you ever been hurt by a well-meaning person who offered a quick cure or solution to your physical ailments? Did you hurt about it even more than your loved ones would have expected? How have you used this experience to respond differently when you are encouraging another person who is suffering?
The text I put in bold really spoke to me. I have been in pain and despair this week and the one thing I didn't look to was God. I had friends offer their ear, but that just didn't seem like enough. I turned to chocolate and didn't get my answers. So today I am committed to turning to God, focusing on Him to guide me through.
If you don't believe in God or are unsure. Contact me. Leaning on Him through my 12 year battle with Lupus has gotten me through some low times. Sure sometimes I need a smack upside the head to remeber He is there. But He is. He understands, He loves me and He puts people in my life to see me through everything.
Subscribe to:
Posts (Atom)