tag:blogger.com,1999:blog-67333072770638201552024-03-04T22:14:21.078-08:00My Lupus UpdateSo I am going to put together my own Lupus site. So many people ask what's going on and I'm not sure how much they really want to know... so I am going to keep everyone posted here. I hope that other "Lupies" will find my site and post comments on how they have done things to survive.Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.comBlogger125125tag:blogger.com,1999:blog-6733307277063820155.post-22422225779091214102012-10-11T12:38:00.000-07:002012-10-11T12:38:13.002-07:00October UpdateI really wish I would use this blog for an outlet more often, but I haven't. Maybe some day I will remember that I can post this stuff and free it from my brain. So here is the update...<br />
I had my infusion in July with no signs of improvement. I went through summer fighting my lupus, watching everything that I did and taking every step with caution.<br />
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I met with my doctor in August and she said that because it took 3-4 infusions for it to start working I should wait until I have been back on it for the full four infusions... this was an overwhelming thought since I was a week away from number 2. She did show me my chart and the amazing progress I had made while on benlysta and to just hang in there. So I did. <br />
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September is usually a pretty stressful month for me, I have WAY too much going on in my life, and this year with the Benlysta not yet working in hit me hard. I struggled all month with painful days after painful days. Getting home to medicate myself couldn't come fast enough. I remember a recent Sunday when I was at church and I had three friends tell me I looked amazing and I must be feeling good, what I didn't share with them was no, this was an act and apparently I was acting too good so I needed to tone it down so no one would ask if I was really doing ok. <br />
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September may have been the worst Lupus symptoms I have had in a LONG time. But on last week I got the fourth infusion... I wasn't too optimistic that it would start working but as of yesterday I can say without a doubt that it has kicked in. I NEVER want to end the infusions, I NEVER want to go back to feeling the way I did. I am so thankful that it is actually working. <br />
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Don't get me wrong, I am going to take it easy the next few weeks just to make sure. <br />
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On another note... I decided at the begining of September to go gluten free for two reasons. One, a few years ago my Rhuemy asked me to just to see if it would work. I didn't have the motivation then or the willingness to try new things and two, I can't loose weight for anything. The first week I had a bad headache but for the most part it's been pretty easy. It's been 6 weeks and I am told it can take 6-8 weeks to see a difference, I know it will be hard to tell since benlysta was started back up but I will just wait and see. <br />
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I will keep you posted!Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com4tag:blogger.com,1999:blog-6733307277063820155.post-24717397113254180862012-07-05T12:22:00.000-07:002012-07-05T12:22:40.001-07:00July 2012A brief background for you before I get into the real motivation for this post. <br />
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I have been off benlysta. April 29th I learned I had bronchitis. That afternoon I had symptoms of a kidney infection. Sure enough I had one. My doc thought the antibiotics would talk care of the infection, but two weeks later I still had it, but no symptoms. She told me she is not too concerned but to follow up with my primary. Since my schedule was so hectic I put it on the back burner. She didn't sound too concerned so I wasn't either. Then as I went in for my next infusion I got a call saying that because I had this infection I couldn't get it. Great. <br />
So I saw another doc, got another antibiotic and this last Tuesday saw my PCP and was all cleared. I partly wonder if he cleared me because I was having some serious issues with my ankles and he was confident it was Lupus... and at those words, I burst into tears. I had finally seen the benefits of benlysta without a doubt in the world.<br />
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The last few weeks have been a consistant reminder of the role Lupus plays in my life. My pain level was high, every inch of me ached. Anytime someone touched me for a hug or something I seared pain through my body. Chest pains at night that would wake me, exhaustion so strong that getting home from work was the only desire of the day so I could go to bed. And guilt. Guilt that I couldn't be a part of my family. Guilt of not wanting to take my son to his class, guilt of letting him play video games the moment we walked in the door. Guilt that my husband had to make and clean up dinner. Guilt that staying awake after my ten year old went to bed so I could spend time with my husband was just too unbearable. And guilt that pain medication was the only thing I desired to make it all numb.<br />
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Guilt...<br />
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A feeling I haven't really felt this strongly in several months. <br />
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A feeling I was choosing to feel. But couldn't make a different choice for myself.<br />
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It's my fault. I put off the appointment. I was lead to believe it wasn't a big deal so I just didn't care. I have learned that lesson a very important lesson.<br />
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But in all this guilt, yesterday may have been the biggest smack in the face for me. I couldn't keep up with others around me. I struggled with being in the sunshine. I struggled with standing for long periods of time and finally I had to distance myself from the fun and go inside to watch from the window. I try desperately to disappear without being noticed, because I don't want a big deal made. I don't want the fun to stop just cause I can't be there. I ended up dozing on the couch to catch up on those elusive spoons I have been searching for the last month.<br />
But it was the first time in months I really felt like I had pushed myself way too far. I sat on the couch looking out the window realizing that benlysta really did make a big impact on my life. It really gave me more time with my son, more time with my husband and more time with my friends enjoying life.<br />
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Today I was studying Ruth for a weekly bible study I am in, and there is apart where the author talks about her friends pain:<br />
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"I can cope with the pain for the most part, but the despair of feeling forgotten by God's healing is overwhelming". <br />
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To me, I don't feel forgotten by God, I feel that God has chosen this path for me and to me that is more overwhelming than to think He forgot me. I know He didn't. But I do consistently wonder why I was chosen this path, and these challenges. But a paragraph later she writes "God love endures forever" and when I read that my mind is at ease. Oh I still wonder why this is my cross to bear, but I know that God still in control, even through my pain, feelings of defeat He is there. And in my lowest point He is holding me.<br />
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Thankfully my rheumy can get me in tomorrow for my infusion. I am ready for it. And if the side effects return I am ready. My body is reacting well to this medication and I thank the Lord for this gift he has given me. <br />
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<br />Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com4tag:blogger.com,1999:blog-6733307277063820155.post-18983057841712173062012-06-22T10:10:00.001-07:002012-06-22T10:11:03.759-07:00<br />
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Like last year I will be giving away a Disney gift basket that will include 2 one day park hopper passes to a Disney park*. Pictures will be posted next couple of weeks. <br />
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Or a lap quilt, made by me, in the fabric of your choice...<br />
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Here are the details oh how you can win:<br />
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1. 1 raffle entry for every $10.00 you donate.<br />
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2. An additional raffle ticket each time you post it on your Facebook/Twitter page (Please tag me so I can keep track)<br />
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3. An Additional raffle ticket if someone donates because of your link<br />
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4. THREE more tickets if you join our team (Seattle walk or Virtual walk)<br />
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5. An additional ticket for each of your friends that join the team<br />
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6. Raise $100 and I'll toss in another ticket.<br />
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Please contact me if you have any questions.<br />
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*(Park tickets will be available mid December)<br />
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Donate to my page by clicking <a href="http://lupuspnw.kintera.org/faf/donorReg/donorPledge.asp?ievent=1022215&lis=1&kntae1022215=5DEF9151E2874489905FC900B536293A&supId=296680312">HERE</a><br />
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Join our team <a href="http://lupuspnw.kintera.org/faf/search/searchTeamPart.asp?ievent=1022215&lis=1&kntae1022215=5DEF9151E2874489905FC900B536293A&supId=0&team=5092624">HERE</a>Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-69734139086997853792012-05-10T06:09:00.001-07:002012-05-10T06:09:26.394-07:00What World Lupus day & Lupus Awareness Month mean to meA 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!Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-13701888317346786642012-04-18T07:28:00.003-07:002012-04-18T07:35:28.158-07:00Put on Purple for Lupus<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheI7okiGmaDyz5agkOVdRQzXAnH4KS27tMG2gdpzV4YSTtSVPFs1nOruKziBKkY1EbnydQO_Lv-qrss2mwZ_O-8etLXjsBLanepbBwsV0Ue72vm2UgTBvKb7VM0BCtn8Ulr2OGGNis_f4/s1600/4378-POPBanner_300x350.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 274px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheI7okiGmaDyz5agkOVdRQzXAnH4KS27tMG2gdpzV4YSTtSVPFs1nOruKziBKkY1EbnydQO_Lv-qrss2mwZ_O-8etLXjsBLanepbBwsV0Ue72vm2UgTBvKb7VM0BCtn8Ulr2OGGNis_f4/s320/4378-POPBanner_300x350.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5732748641315816114" /></a><br />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.<br /><br /><br />I am going to have a contest... So here are the rules:<br /><br />Wear purple on the 18th and post a photo on Facebook or Twitter (Tag me! I have to see it!)<br /><br />Get others to do this (Have them tag both you & me so I can keep track of who did it because of your efforts)<br /><br />Get a Celebrity to wear purple and get 5 extra entries (Local celebrities count too!!) <br /><br />Get your company to sponsor this event and get 3 extra entries. <br /><br />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)<br />The prize is a $100 PF Changs Gift Card. So dig out that purple and join in!!<br />PS- Here is the Facebook event: https://www.facebook.com/#!/events/205471922889558/ or comment below and let me know you will join us!Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-15879246540058249062012-04-18T07:17:00.002-07:002012-04-18T07:28:50.628-07:00FrustrationI have been playing with this post in my head for a few weeks now. But this weekend really set off my frustrations. <br /><br />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. <br /><br />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. <br /><br />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? <br /><br />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".<br /><br />These comments drive me INSANE. My body isn't a normal body. My body doesn't heal like others. Pain is a bad thing. <br /><br />Why do I do this to myself?<br />Why do I think that any drug will make me "normal"?<br />Why do I expect Benlysta to make is all go away?<br /><br />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.<br /><br />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.Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-77812304693814750652012-03-27T07:20:00.002-07:002012-03-27T07:28:59.808-07:00UpdateNot 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.<br /><br />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.<br /><br />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.<br /><br />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!Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-192162896852411892012-02-28T13:16:00.002-08:002012-02-28T13:38:59.911-08:00My take on the Royal Pains Lupus Story LineI 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:<br /><br />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.<br /><br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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).Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com2tag:blogger.com,1999:blog-6733307277063820155.post-40848927455787213402012-02-15T11:29:00.000-08:002012-02-15T11:31:27.258-08:00Lupus and Genetics (Guest Blogger)<em>Written by Jenna Walters</em><br />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. <br /><br />Is Lupus Linked to Genetics?<br /><br />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. <br /><br />The Role of Genetic Research <br /><br />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. <br /><br />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.<br /><br />Treating Lupus <br /><br />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.<br /><br /><br /><br /><br /><strong><em>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.</em></strong>Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-38596274546022946692012-01-26T07:21:00.000-08:002012-01-26T07:30:53.906-08:00Today's devotion emailI 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.<br /><br />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. <br /><br />I wanted to share this with you today because today's email hit home. Hit me right upside the head. So here it is:<br /><br /><br /><br /><em>"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)<br /><br />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.<br /><br />Rather than offering support and prayer, they offered her what they assumed was a “sure-fire”cure.<br /><br />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.<br /><br />It always breaks my heart when others pass judgment on those who are in pain. . .<br />Well-meaning church-members assume they have the answers.<br />Well-meaning friends offer their cures, remedies and advice.<br />Well-meaning family members don’t understand why we are in pain.<br /><br />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.<br /><br />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.<br /><br /><strong>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.<br /><br />I would like a friend who would listen and understand.<br />I have that friend today in Jesus.<br />He is a friend I can always turn to.<br />He understands me through and through.<br />What kind of a friend are you today?</strong><br /><br />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.<br /><br />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.<br /><br />About the author:<br />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!<br /><br />You can now read this on your Kindle. Find out more at http://TodaysDevotionOnKindle.com<br /><br />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?</em><br /><br />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.<br /><br />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.Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-85905395141813695152012-01-25T08:48:00.000-08:002012-01-26T08:21:05.490-08:00Guest 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.<br /><br />Email me lewisdca@msn.com<br /><br />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!Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-52072747002954078352012-01-25T08:23:00.000-08:002012-01-25T08:43:16.896-08:00the morning afterThis morning I thought I would wake up feeling better. Yes, I know, I have an optomistic look on life sometimes. But I didn't. <br /><br />The good news, bland food and fluids are staying in me. A lot of stomach pains come with that, but it works. <br /><br />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.<br /><br />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. <br /><br />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.Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-76736540388203387882012-01-24T19:21:00.000-08:002012-01-24T19:31:58.881-08:00Ever 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. <br /><br />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? <br /><br />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. <br /><br />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?Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com1tag:blogger.com,1999:blog-6733307277063820155.post-48649639464390907302012-01-09T07:37:00.000-08:002012-01-09T07:49:56.514-08:00Product reviewI was not given product for this blog post, I just love this product- although if they wanted to send me some as a thank you I wouldn't turn it away) :-)<br /><br /><br /><br />I am NOT a "health" person. I roll my eyes at people who say this vitamin or that will probably help me with my Lupus. Mainly cause I have tried it all. But I had confided in a friend of mine about my struggle to loose weight and how I desperatly wanted something I could have for breakfast that was fast and easy to do. She told me about this drink... I am a PICKY eater, so I was skeptical. She gave me a three day sample and I actually was able to drink it.<br /><br />The first is a mix called "Green Vibrance"<br /><br />Green Vibrance is the original Concentrated Green Superfood. It's a nutritional powerhouse that improves energy and endurance, strengthens immunity, improves digestion and circulation. Green Vibrance has more nutrient density than any other green-food product on the market. It contains 58 certified organic, concetrated foods and extracts, all of the highest quality, along with an industry-leading 18 billion probiotics per serving. (From the Amazon website)<br /><br /><br /><a href="http://www.amazon.com/Vibrant-Health-Green-Vibrance-Family/dp/B000NDME6C/ref=sr_1_1?ie=UTF8&qid=1326123726&sr=8-1">Click here to find it on Amazon</a><br /><br />I also mix it with "Rainbow Vibrance" <br /><br />Rainbow Vibrance red, yellow, blue & green fresh fruits and vegetables two-thirds of a pound of fresh fruits and vegetables concentrated in each scoop. Equivalent to 4½ servings of fruits and vegetables 3,974 ORAC units per serving; Gluten free. We do not live in a monochromatic world. In the realm of nutritional supplementation, red drinks are not enough. Blueberry, blackberry, grape, plums, peaches and apricots measure up well against the famous red fruits cranberry, raspberry, cherry and Camu-camu. But good health does not revolve solely around the strength of anti-oxidants in the diet. Soluble and insoluble fibers, indoles, sulphorohane, flavanols, flavonoids, and complex polysaccharides and carotenoids all play a part. <br /><br /><a href="http://www.amazon.com/Vibrant-Health-Vibrance-Superfood-6-24-Ounces/dp/B001ECZNLO/ref=pd_sim_hpc_1">Click here to find it on Amazon</a><br /><br />I mix these together with 10 oz of orange juice and a scoop of Physillum Husk and drink it every morning.<br /><br />I feel great. The digestion issues I have with my lupus are completely gone (Including when I had my major flare in December). It is the perfect breakfast for me and keeps me "full" until lunch time. <br /><br /><br />Feel free to ask me questions. But if you are looking for a healthy drink I would suggest these. The cost can be over welming by $100 for two months is pretty good for breakfast every morning.Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com2tag:blogger.com,1999:blog-6733307277063820155.post-14026382604560804142012-01-09T07:31:00.001-08:002012-01-09T07:36:47.352-08:00December UpdateSo I have once again neglected the blog and now my mind is spinning with all kinds of posts... So I'll start with this one:<br /><br />December was a fun month, too fun. We decided to take a last minute cruise and I pushed myself way to hard. I really over estimated how great Benlysta was working. So I flared, and flared bad. Still dealing with the flare. Good Times!!<br /><br />I forgot how bad I felt before I started Benlysta. SO now I am taking it easy, as much as I can and wait for the medication to take control once again. Oh, who am I kidding I'm not taking it easy at all. Still working out, still have a crazy commitment schedule. Will I slow down, probably not. My body just needs to catch up.<br /><br />My primary doctor wants to test me for diabetes, this to me is a HUGE blow. I'm overweight, yes. But I am trying so hard. If the "cure" for type 2 is weight loss and I can't loose weight how am I suppose to get over it? The test he wants is two hours long and I just haven't gotten up the courage to go do it.<br /><br />So that is all I got for now... I have other posts that have nothing to do with an "update" that I will type up now.Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com1tag:blogger.com,1999:blog-6733307277063820155.post-72800361540106039262011-11-18T11:02:00.000-08:002011-11-18T11:10:33.198-08:00NovemberI haven't been thinking too much about my Lupus lately because it really hasn't been an issue, which is a HUGE relief. I must admit this week didn't start off too good and it was a sign that the Benlysta is actually working. <br /><br />I started to flare on Monday night. Stress and the fact that I was due for another infusion probably started the whole thing. I was so sick. Facial rash, chest pain, mouth sores, exhaustion and pain EVERYWHERE. So I fought my way through the four days to this morning. But I have to say I was reminded of how I feel when I am not on Benlysta. <br /><br />Every joint feels like it was hit with a baseball bat, every movement has to be carefully planned. Every free moment should be spent resting. I am so incredibly thankful that this medication is working, and working well. I would be happy to take a few days every month of feeling like this if it meant the other days were so much better. The other days are filled with activities, family & friends. It is so great to feel so good.<br /><br />So today was my 4th infusion. I enjoy getting them. I am excited to get them. And then 1/2 way through I am reminded of why I do these on a Friday. Nausea and exhaustion quickly set in. I am not complaining by any means. I will be rejoicing for as long as it works. I am so greatful for a drug that finally makes a difference in my life. <br /><br />But now I struggle with habbits. After years of having to come home after work and lay down I come home from work and I have no idea what to do, so I go lay down. I need to learn to cook and clean spend more time with my family. I still need to listen to my body, but I need to learn it's ok to push myself and do what a "normal" person does on a daily basis. This will take time, but honestly, I don't even know where to start.<br /><br />I hope you all have a safe, rest filled Thanksgiving next week. I will be enjoying time with friends as we play cards until the wee hours of the morning!Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com2tag:blogger.com,1999:blog-6733307277063820155.post-60188333791842162422011-10-26T08:41:00.000-07:002011-10-26T08:50:05.967-07:003rd treatment doneSo I had my 3rd infusion last friday for Benlysta. The nausea was nonexsistent, but I was still pretty tired for two days after. Luckily I can handle being tired. I did however realize another side effect I was having... after 48 hours of sheer exhaustion I deal with several days of insomnia. That's right as of today (Wednesday) I have had maybe 7 hours of sleep since Sunday night. You would think I would be exhausted, but really I'm not. I hate being awake all night. It is so boring. I do go watch TV, but our couch and chair are so incredibly uncomfortable that I begin to hurt all over so I can't do it for long.<br /><br />I have realized that the Benlysta is begining to work. First, I have a monthly flare with my cycle and I didn't get one. And second, I worked the Seattle Lupus Walk and even after all that no flare. I have had some minor set backs with my pluerisy, but that I have been able to deal with. <br /><br />It is really exciting to know it's working. I'm still causious about talking about the fact that it's working. But I secretly know that it is. It is so exciting to think it might be working. 11 years of medication after medication. <br /><br />Now my infusions are monthly, so I guess time will tell.Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com3tag:blogger.com,1999:blog-6733307277063820155.post-4783714827044324782011-10-18T07:49:00.000-07:002011-10-18T08:04:01.239-07:00Benlysta and Other feelingsI started Benlysta 5 weeks ago and on Friday I get my third dose. After the last two I have spent my weekend sick and tired. Normally I would say, it's not an issue, but this has knocked me out. If it works, it will be VERY worth it! So far other than the two days after each infusion I feel my normal. <br /><br />This last weekend was the Seattle Lupus walk. I sit on the committee that puts it on and I must say I expected to have it hit me very hard. I didn't "wear out" until after 12:00 which is a huge improvement over last year. Now I did go home and spend the rest of the weekend resting. So I don't know if the fact that I feel ok today is a sign of successful resting or if maybe this new med is starting to work. I guess only time will tell.<br /><br />And now on to some venting...<br /><br />In the past I have been exposed to people who claim to be lupus patients. (I know I shouldn't judge and believe their word). But their actions really make me question whether or not they do have it. I have been exposed to one of these people a lot lately, and I just want to scream. I feel like she is belittling my disease. She never says she is doing a treatment she just waits for one of us to talk and then agrees or claims her doctor has talked about that treatment. It is so frustrating. <br />(one once told me that she too had Lupus and Fibromyalgia too but she didn't believe Fibromyalgia was an actual issue).<br /><br />It's just interesting. Why are these people so in need of attention, why do they have to belittle my suffering?<br /><br />Hopefully I can let it go, hopefully I can move on. Thanks for letting me vent. And for the record, I rarely question anyone who has Lupus, but after spending a LOT of time with a couple of people i have learned that their actions speak a lot louder and if they have Lupus I would be SHOCKED. What I would give to be healthy.Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com1tag:blogger.com,1999:blog-6733307277063820155.post-890573090110920642011-09-20T08:55:00.000-07:002011-09-20T09:06:41.180-07:00Lupus is painfulFor the last couple of weeks I have needed some heavy pain killers to get me through the night. But I always fear becoming addicted and needing them to sleep. So last night I decided I can do it, I can sleep without them. Boy was I wrong.<br /><br />I am not a big pill popper, so I always look for ways out of taking medication. But with narcotics I am super careful. I don't like to take them every night and I don't like to take them after midnight (for fear of not being able to get up in the morning). <br /><br />So last night I thought I could handle it. I thought I could sleep without issues. I was sore when i laid down but I didn't think much of it. Then at 1:00 I was awake, in pain. A lot of pain. I tried to get comfortable. I just couldn't. The only way I can describe it is it feels like someone beat me with a baseball bat. The covers on the bed were too heavy, the weight of my body on my hips shot pain down my legs. So I got up. I wasn't willing to pop the narcotics.<br /><br />I watched tv, walked around the living room. Sat down, laid down, anythin position that would ease the pain for just a few minutes. After an hour of bad TV I knew I had to try and go back to bed and yes take those pain pills.<br /><br />I opted for my lesser dose meds in hopes of being able to get up in the morning. it took anoth 45 minutes of me laying there getting comfortable and waiting for the pain to go away. When it finally did sleep came back. Getting up this morning was extremely difficult. My joints were stiff and bearing weight on my joints was painful. But I have to get up. If I let Lupus win every day I will go no where. I need to win the battles.<br /><br /><br />BENLYSTA Update: I was approved for Benlysta over a week ago. But we have to go through my mail order pharmacy. Not sure why but it's frustrating. Last Monday I called and was told the RX was written for the full amount my insurance allows so they had a call into the doctor for a new RX. Then Saturday I get a call asking if I approve the medication and if I approve it to be shipped... um YES. But they can't ship it until they talk to my doctors office and confirm they will receive it. So HOPEFULLY yesterday my doctors office called them back and confirmed that yes they will receive the medication so it would be shipped. This is really frustrating. And to add to this awesome flare I am angry. Could the Benlysta have prevented what I went through? I don't know, but I am hopeful that I wont have to go through another night like that one.Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com1tag:blogger.com,1999:blog-6733307277063820155.post-46498993079172790642011-09-13T12:59:00.000-07:002011-09-13T13:12:10.390-07:00I'm TiredLike that's a shock.. I'm ALWAYS tired. Yesterday, after almost three weeks, I got word that my insurance approved Benlysta. I was so EXCITED! The catch? it had to go through a mail order pharmacy (their pharmacy). I didn't think much of it until today. I called to find out when to expect the med only to learn that first, they had a question for the doctor so they were waiting for a call back. Second their processing time is 5-7 business days. I was so stinking annoyed. 5-7 MORE days? This is so stupid. <br /><br />I realize this is probably another lesson in patience, but I don't feel well, I want to get it started. I WANT TO FEEL BETTER!!! Deep down inside I know it will take time for Benlysta to get in my system. But when you feel like I do that hope of getting in my system soon so it can start working is there.<br /><br />So I sit and wait. It sucks. I guess the good thing is it's in process and the wait wont be that long, right?Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-86840522442552786812011-09-07T10:10:00.000-07:002011-09-14T14:44:41.924-07:00Walk Giveaway<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhybBqw3v1YRQ7YW2WAkm0ac5xkgD5J_c81jfh2vOVmSc0r_xopnxrKDavz43gARJhgMRNR1bjdN940FCcv4A9xg8WLlclu7jEcpEVGMDSnw1wApsuYqix7DUYBdNenH4p1ajqkzvQFv2Y/s1600/321228_10150312076891912_651801911_8082816_2111384293_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhybBqw3v1YRQ7YW2WAkm0ac5xkgD5J_c81jfh2vOVmSc0r_xopnxrKDavz43gARJhgMRNR1bjdN940FCcv4A9xg8WLlclu7jEcpEVGMDSnw1wApsuYqix7DUYBdNenH4p1ajqkzvQFv2Y/s320/321228_10150312076891912_651801911_8082816_2111384293_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5652334482987218482" /></a><br />Like last year I will be giving away a Disney gift basket that will include 2 one day park hopper passes to a Disney park*. Pictures will be posted next couple of weeks. <br />Or a lap quilt, made by me, in the fabric of your choice...<br /><br /><br /><br /> Here are the details oh how you can win:<br /><br />1. 1 raffle entry for every $10.00 you donate.<br /><br />2. An additional raffle ticket each time you post it on your Facebook/Twitter page (Please tag me so I can keep track)<br /><br />3. An Additional raffle ticket if someone donates because of your link<br /><br />4. THREE more tickets if you join our team (Seattle walk or Virtual walk)<br /><br />5. An additional ticket for each of your friends that join the team<br /><br />6. Raise $100 and I'll toss in another ticket.<br /><br />Please contact me if you have any questions.<br /><br />*(Park tickets will be available mid December)<br /><br /><a href="http://lupuspnw.kintera.org/faf/donorReg/donorPledge.asp?ievent=470305&lis=1&kntae470305=F0E4CAF2709B48028E4E06120F762A71&supId=296680312">Donate to my page by clicking here</a><br /><br /><a href="http://lupuspnw.kintera.org/faf/search/searchTeamPart.asp?ievent=470305&lis=1&kntae470305=F0E4CAF2709B48028E4E06120F762A71&supId=0&team=4103503&cj=Y">Join our team here</a>Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-5281229661417697992011-09-01T09:20:00.000-07:002011-09-01T09:30:26.184-07:00SeptemberIt's September already? Wow!
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<br />I saw my Rheumy last week. The meds she had given me in July made me sick, really sick. I was up all night sick and I called and said I was done with them. I didn't see a difference until after I stopped taking them.
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<br />When I saw her we had a long talk about the next steps and Benlysta was mentioned. For those that don't know, Benlysta was just approved this past winter. It is the first Lupus drug to be approved in over 50 years (Roosevelt was president).
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<br />The problem? the waiting period to get it approved with my insurance. I sit here a week later jumping everytime my phone buzz's, which happnes to be a lot. I'm ready, I want to take this step. I have heard so many positive expierence's with Benlysta (Yes, I've heard the bad ones too), that I am anxious to try it. I want to get it running through my body now. Why do the insurance companies have to take so long to determine if my doctor is right or not on my treatment... So I wait. I was told that it could take two weeks. TWO WEEKS? don't they get how crappy I feel? Or how once I get approval I have to make the appointment and wait for the office to get the drug? Don't they get it? I am sure I wont be able to get it til the middle of September, but it's so hard to wait. I just want my energy and my health better. I want the pain to go away!
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<br />I've also been pimping out my walk page like no body's business. I am passionate about Lupus awareness, I want a day when I don't have to tell people what it is. Will that ever happen?
<br /><a href="http://lupuspnw.kintera.org/faf/donorReg/donorPledge.asp?ievent=470305&lis=1&kntae470305=6180A673A63E49E5AD79443201EB54B1&supId=296680312">Click here</a>
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<br />My "Why I walk" Story is on the link above, and yes there is a Disney Gift Basket up for grabs that will be raffled off for one lucky winner. Help me today. Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com1tag:blogger.com,1999:blog-6733307277063820155.post-50284672187395917822011-08-12T10:31:00.001-07:002011-08-31T07:31:23.398-07:00Why I walkIf you don't have me on facebook or twitter than you haven't seen this link... Check it out:
<br /><a href="http://www.lupus.org/webmodules/webarticlesnet/templates/pacificnw_news.aspx?articleid=4012&zoneid=257">http://www.lupus.org/webmodules/webarticlesnet/templates/pacificnw_news.aspx?articleid=4012&zoneid=257</a>
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<br />This site changed their story, so you can now find my Why I walk Story <a href="http://lupuspnw.kintera.org/faf/donorReg/donorPledge.asp?ievent=470305&lis=1&kntae470305=852810BED67840EC841064F5B33F8BA5&supId=296680312">HERE</a>Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com3tag:blogger.com,1999:blog-6733307277063820155.post-18851744751337370192011-08-09T11:36:00.000-07:002011-08-09T11:48:18.133-07:00What is pleurisy?What is pleurisy?
<br />Pleurisy is swelling (inflammation) of the thin layers of tissue (pleura) covering the lungs and the chest wall.
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<br />The outer layer of the pleura lines the inside of the chest wall, and the inner layer covers the lungs. The tiny space between the two layers is called the pleural cavity. This cavity normally contains a small amount of lubricating fluid that allows the two layers to slide over each other when you breathe.
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<br />When the pleura becomes inflamed, the layers rub together, causing chest pain. This is known as pleuritic pain.
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<br />Pleurisy is sometimes called pleuritis.
<br />(Above was taken from the WebMD.com defination).
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<br />So that above is how pluerisy is described, but let me tell you about it in my own words.
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<br />Your sitting at your desk, making dinner, driving or even laying down and all of a sudden my chest gets the stabbing pain. With every inhale I feel like my lungs are being stabbed. And with every exhale they feel the same. My entire body tightens up in hopes of enduring the pain. How long will this one last? Relief, when can I get some relief. If I hold my breath I get a little relief, jusst don't move my lungs. Then I take shallow breaths as long as my body can handle it in hopes of less movement. By now I am usually hugging a pillow or something close by and climbing into a ball in hopes of some relief but none comes. It can wake me in the dead of night. It is one pain I can't hold in. It takes all that is in me not to cry out and hope for relief soon.
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<br />You see, pleurisy can come and go whenever it wants.
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<br />By the time it goes my back hurts, my arms hurt and my head hurts from all that I have done to relieve the pain that really can't be relieved.
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<br />Right now I have had several attacks in the last 24 hours. Attacks that are bringing me to tears, attacks that even my strongest pain med doesn't even touch. Attacks that lingere in my arm and collar bone area until the next one. Attacks that just make today painful.
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<br />I wouldn't wish pleurisy on my worst nightmare. I wouldn't wish it on anyone. It is something terrible. But it's just another sign for me that I have Lupus. That I will never have a day without pain and that this will never go away. It's also a sign that meds are working and we need to look at "what's next". It's a sad sign. But one I am going to share with anyone who listens.
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<br />It's true Lupus sucks hard core. But we need to raise our voices and make it heard. So stand up and be heard. Find a walk in your area. Share this with someone who doesn't know what lupus is. Help us raise awareness.
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<br />In the meantime I'll be curled up trying to relieve this instense pain.
<br />Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0tag:blogger.com,1999:blog-6733307277063820155.post-90029971781385499202011-08-03T12:30:00.001-07:002011-08-03T12:38:45.034-07:00UpdateI am going to see if I can get through this post without completely losing it. <br /><br />On July 13th (My birthday) I had an appointment with my new Rheumy. I was so nervous. I even had a panic attack while waiting for her. It was crazy. Within the first few minutes I knew she was going to be a perfect fit.<br /><br />We came to the conclusion that the Rituxan was not going to work for me (Sucks, all that crap I went through and the weeks worth of bed rest). She also discussed trying to manage my Lupus and not my symptoms. I didn't realize before that we weren't doing that. So I listened intently and we created a plan, one I was very happy with.<br /><br />I left the doctor's on a high note with prescriptions in hand. When I got back to my office all hell broke loose in my personal life. My brother's 18 month old nephew drown in a back yard pond.<br /><br />My little brother lives in Salt Lake City and me in Seattle, 13 hours apart. Plus my brother has some severe mental health issues (Manic Bipolar to just name one). I didn't think, I jumped in the car and headed home crying my eyes out. Grabbed my nine year old packed and hit the road. Planned on driving until I got there.<br /><br />The reason I post this is because my lupus has been calm through all this stress. I was awake for 36 hours without a break and emotionally falling apart, but my body held it together. By the grace of God I have made it with no flare. I didn't even stop to fill the new prescriptions. My body held it together til I got home and started the new meds.<br /><br />Even three weeks later I am feeling pretty good. The stress of what my brother and his wife are going through still falls heavily on me, but I am doing ok physically. This is a shock to me. I have really struggled with what it means lean on God physically and I think I am learning that lesson during these times.<br /><br />I hope my Lupus friends have what I have in God. I pray for each of you daily that you get the support from the One who can truly give you that support.<br /><br />Much love...Cori Lewishttp://www.blogger.com/profile/01883873719139941485noreply@blogger.com0