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!
Tuesday, March 27, 2012
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.
Wednesday, January 25, 2012
Guest Bloggers?
I recently had a request from someone who would like to be a guest blogger. I have never even considered this, but I am open to it. If this is something you would be interested in doing send me an email and let me know. I will be happy to review your writing and post it. I would like to keep away from sales posts and things of that matter. You don't have to be just a patient, you can be a caregiver or someone on the outside looking in.
Email me lewisdca@msn.com
Also, if you have other blogs you enjoy reading or you have one yourself, leave me the link and I am happy to post it on the side of my blog so others can enjoy!
Email me lewisdca@msn.com
Also, if you have other blogs you enjoy reading or you have one yourself, leave me the link and I am happy to post it on the side of my blog so others can enjoy!
the morning after
This morning I thought I would wake up feeling better. Yes, I know, I have an optomistic look on life sometimes. But I didn't.
The good news, bland food and fluids are staying in me. A lot of stomach pains come with that, but it works.
Surprising my joints are doing ok today. Last night it was horrible. Had to take medications to sleep. I am feeling stressed too. Is the Benlysta working? Is it not? I just don't know anymore.
I thought working out was helping my body feel better with the Benlysta, now I don't know. What else can I do? I don't know.
Time to pick myself up off the floor, figure this crap out and move on. I think this will be much harder said than donw, but I am going to try.
The good news, bland food and fluids are staying in me. A lot of stomach pains come with that, but it works.
Surprising my joints are doing ok today. Last night it was horrible. Had to take medications to sleep. I am feeling stressed too. Is the Benlysta working? Is it not? I just don't know anymore.
I thought working out was helping my body feel better with the Benlysta, now I don't know. What else can I do? I don't know.
Time to pick myself up off the floor, figure this crap out and move on. I think this will be much harder said than donw, but I am going to try.
Tuesday, January 24, 2012
Ever feel alone?
I know I'm not alone. Thousands of people deal with Lupus everyday, but each case is unique. This week I have been keeping myself out of the gutter, but just barely.
I am so frustrated with all I am going through. I was feeling so great and then something hit and now I feel as bad as I did 6 months ago. What is going on? Is the Benlysta done working? Did it ever work, or was I fooling myself?
Back in September my husband challenged me to loose 80 pounds. 80 pounds I would give anything to loose. But it's been hard, very hard. Going to the gym is hard. Not because I'm out of shape but because it hurts so much. Everything I do there I will pay for the next several days. I want this so bad and yet I can't achieve it. I want this more than anything and it's so hard. I worked with a trainer tonight and I had to keep taking breaks. It killed me to see all these people that make it look so easy (my husband being one of them). I just feel defeated.
Between feeling like crap suddenly and the realization that I will probably never loose this weight has but me on the depressed track. Maybe I'm throwing myself a pity party but I really feel alone. No one knows what it feels like. No one understands. I wonder why I got dealt this hand I. Life. When will someone come along who can mentor me through this?
I am so frustrated with all I am going through. I was feeling so great and then something hit and now I feel as bad as I did 6 months ago. What is going on? Is the Benlysta done working? Did it ever work, or was I fooling myself?
Back in September my husband challenged me to loose 80 pounds. 80 pounds I would give anything to loose. But it's been hard, very hard. Going to the gym is hard. Not because I'm out of shape but because it hurts so much. Everything I do there I will pay for the next several days. I want this so bad and yet I can't achieve it. I want this more than anything and it's so hard. I worked with a trainer tonight and I had to keep taking breaks. It killed me to see all these people that make it look so easy (my husband being one of them). I just feel defeated.
Between feeling like crap suddenly and the realization that I will probably never loose this weight has but me on the depressed track. Maybe I'm throwing myself a pity party but I really feel alone. No one knows what it feels like. No one understands. I wonder why I got dealt this hand I. Life. When will someone come along who can mentor me through this?
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