I thought maybe I should write a little bit about Lupus so that people who visit my blog understand what it is that “we” the lupus community deal with on a daily basis. First and foremost Lupus is not a contagious or sexually transmitted disease. It cannot be spread from person to person. And, even though a lot of people believe it has to be genetic in nature that is not always the case.
Lupus is an autoimmune disease. It affects just about every part of the body but it affects every person who has it differently. No two people have the same problems. It can be fatal. It can destroy your life. It can destroy relationships. It is very misunderstood. But, it can be fought, and it can be lived through.
I want to tell you my major issues and my fight because it is not the same as everyone else’s. Hopefully this will generate conversation on my blog and others about how people are affected. Perhaps we who have it, and those around us who are our support system will begin to talk more openly and the exposure that Lupus needs to have will begin to happen. I’m tired. 95% of my life is spent tired. I have to fight my way through fatigue all day long most days. There is no cure for that. I hurt. My joints, back, often my skin hurts. Sometimes the pain seems unbearable. Most times the smile I wear is purely acting. (Did I mention I am an oscar worthy actress??) My kidneys don’t function the way they should. I am basically allergic to the sun…yes I live in Phoenix AZ one of the hottest places on the planet. The summer for me is brutal. I don’t get to spend a lot of time with my family at the pool, or water parks during the summer, yes there is an emmense amount of guilt involved in that. I break out in skin leisions. My hair falls out by the handfuls. Migraines are awful. They are dibilitating. Some days I vomit for no reason. I bleed when I urinate, and sometimes when I go poop….just what you wanted to hear right??? I have sjogrens syndrom which means i don’t create enough syliva…my mouth is almost always dry. I have rynauds which means my fingertips turn blue when i am cold. I have three blod clotting disorders. My lungs are not great and my heart isn’t so good either. But, if you were to see me in the mall, at the grocery store, in church, at a park, where ever, you would never think there was a thing wrong with me. that’s one of the hardest things about this disease. It just doesn’t show.
Because most of it you cant’ see people think I am lazy, or un motivated. People think I am a slacker or not willing to help out in certain areas. I am on disablility. Some would wonder why since I look completely capable of working. If only they knew that flourescent lights almost knock me out.
I can’t do things for my kids that I would like to do. I feel guilt for that. Depression is a constant friend and with that comes low self esteem and anxiety. Who would love someone with this kind of illness? I am on so many meds I have lost count.
However, I love life. I love my life. I love my husband, my kids, my grand kids and I believe in Gods amazing grace. I believe He is working through me with this disease for something greater then i know now. And I am growing each day. Every day is new.
If you have Lupus or know someone who does you are not alone. You are a champion. You are the best of the best. The strongest of the strong. You are a fighter…an everyday hero. You are in for the fight of your life…but….the best is yet to be!
As you can see from the pictures I have a very full and busy life. I love my family. They mean the world to me. I write for them…I love for them…I live for them…and I am here by grace!
Permanent Ink said,
April 30, 2008 at 7:08 pm
I can relate with this post. I too have Lupus and Raynauds. They only thing that show’s is ‘the flare ups’. It shows on my face, my body and my attitude. I have no support system to fall back on, and so I go it alone. I love working outside. I love to fish and camp/hunt/garden/ride motorcyles etc. but the sun is killing me. I am swollen and feel like a bloated cow most of the time. Purple fingers are not very attractive, so I have stopped getting manicures. I have a purple toe, so as not to have to explain this ‘illness’, so now I don’t get manicure. Anyhow, good post and I hope you have a great day!!
Peace
javaqueen14 said,
May 7, 2008 at 7:05 am
I’ve learned yet another lesson by blogging. I never knew what lupus is. I do now and I think you are very brave. It takes a lot of courage to write what you did and you are helping so many by doing so. Best to you and yours!
sherriet said,
May 14, 2008 at 10:09 pm
My SIL’s mother died from complications from Lupus and had a scare herself earlier this year. You are helping others understand the disease and how your life has been affected by it. Best to you!
BTW, thanks for stopping by and commenting. Much appreciated.
Karen said,
May 24, 2008 at 1:31 am
Just popping by to say hello and thank you for commenting on my blog. You seem like one amazing , brave lady — thanks for teaching me about lupus. Best of luck to you.
jennyspeaks said,
June 12, 2008 at 1:29 am
hmmm you’ve cleared all my misconceptions of lupus. it’s great to see yet another positive spirit out there living life to the max. c’est la vie!
Natalia Antonova said,
June 19, 2008 at 7:48 pm
Woman, you are strong. You are beautiful.
lwayswright said,
June 19, 2008 at 11:57 pm
thanks! I appreciate your comment!
bint alshamsa said,
July 29, 2008 at 10:28 pm
Woot! Another lupie on the web! I can’t wait to add you to my blogroll. Like you, I have to deal with the chronic dry mouth (which has resulted in several cavities because of the lack of saliva to wash things down), fatigue, hair loss, skin sensitivity, and arthritis. I must stay indoors at home most of the time because I simply don’t have the energy to get out and about, especially not where I live (Louisiana–the subtropics).
Thank you so much for adding the part about being allergic to the sun. I’ve said that to people and they totally brush it off because they don’t think such a thing is possible. Well, you and I and other lupies know otherwise, right? I tell people that the sun is my kryptonite.
I can’t wait to start reading your writing. It feels so good to see other women with disabilities who are living life on their own terms. Kudos!
AlisonH said,
August 12, 2008 at 3:49 am
I am intensely sensitive to UV light as well with my lupus. I have LE cells in my GI tract, which has simply been labelled Crohn’s for simplicity’s sake, given that that’s how it manifests. It is all completely unresponsive to steroids, always has been, and I get hives with Plaquenil, so it’s been an interesting 18 years. And life goes very happily on: the lupus is just background noise. Just turn up the music a little louder, y’know?
The ironic thing is, a reckless speeder totalled my car and damaged my balance and left me walking with a cane, so now there’s damage that shows, even though it’s totally of no real consequence. People look at me and think, wow, she must have some huge disease or something!
Which is kind of funny, really.
nowiz said,
August 22, 2008 at 5:00 pm
I love the site! I have a friend who’s wife has Lupus she miss work a lot. The picture on flickr.com were wonderful.
lupusranting said,
August 28, 2008 at 1:46 am
I have systemic lupus, subacute cutaneous lupus, and sjogren’s overlap. I’m also ridiculously photosensitive. Have tinted my car windows, wear SPF 50 clothing, sunblock and hats, but when I’m in a flare (like the last 5 months) nothing seems to help. So if you ever come to Missouri and notice a nice lady shopping at Target with a big smile and a floppy hat to shield her from the florescent lights, say hello! It’s probably me! Stay strong and keep smiling!
— Sue
Michal said,
September 8, 2008 at 7:33 pm
Kindest regards from Poland!
Thank you for the beautiful witness of faith, hope and love. I have forwarded it to my girlfriend who fights Sjoegren’s. You are very brave woman and your life is a great win.
Laine said,
September 21, 2008 at 5:10 am
Thank you for dropping by my blog.
God is amazing, cast your burdens unto him and he’ll take care of everything. Although I don’t know anyone who has Lupus but my dad is a survivor of brain cancer! God has been kind to our family and my dad is doing well so far. Who knows, God might decide to perform a miracle and you’ll be healed one day. Just keep praying and keep your faith strong in our Lord
God’s grace is the best medicine I’ve known so far.
Stay strong!
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Rachel said,
May 12, 2009 at 5:15 pm
Hi Lori,
My name is Rachel Neil and I go to school in Anoka, MN. I dont know much about you or anything but this popped up in a google search so i can only hope you are based in MN. My senior class is required to complete a service project and my group and I are holding a benefit concert to raise money and awareness for lupus (my mother was diagnosed two years ago). We are hoping to find an organization that would consider accepting a donation as well as appearing at the show to speak briefly. I also wanted to have someone who HAS lupus to speak about their personal journey for a few minutes. As i said, I am not sure if you even live in minnesota, but if you would be interested, or even offer any information about organizations you are/ were involved in that would benefit from a donation please let me know. you can email me at baneil@comcast.net OR my cell is 763.228.5252 Thank you so much. God Bless
lwayswright said,
May 12, 2009 at 5:28 pm
I sent you an email…hopefully you get it!
Zoya said,
June 16, 2009 at 11:20 pm
God tests us all, some through loss of a beloved, failed relationships, heartbreaks and some with life threatening health problems.
I’m very happy that you’re making it through, and I pray that you and all people of the world facing any sort of health problem, be rewarded with treasures beyond the scope of their imagination.
I wish you and your family all the best and thank you so much for telling us not so grateful people about how it’s like having this problem.
Most people wouldn’t realize what you go through, but it’s not about the people anyway, it’s all about you…and how you shape up your life from this point onwards…and I’m sure this has made you more thankful about whatever God has blessed you with, which in itself brings in peace. And peace, nowadays, is very hard to find.
May sunshine kiss your depressions away.
Take care,
-Zoya