LUPUS

the guitar mandrummershubby and I at christmasmy girlsI 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!

34 thoughts on “LUPUS

  1. Permanent Ink says:

    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

  2. javaqueen14 says:

    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!

    • martha says:

      The only thing I can tell you right now is thank you so much. I was so depressed at this minute actually i was crying and desperate of my situation but as soon I read you situation I kind of related to you and actually it made me think that there are many people like us with the same disease, and probably don’t know it. When i was diagnosed I didn’t know it actually I was diagnosed with menginitis first and i was in the hospital for 2 weeks, then I went back to work and after working for 3 months i got sick again and went back to the hospital and got diagnosed with RA (rhemathoid arthitris) and Lupus , like you i have Rynauds and Migranes for years and having lupus now I understand that I had it all this time but doctors weren’t aware because Lupus was not a disease that was on top of the list of diseases for doctors to watch for. The only thing we can do now is live with it and try to survive and enjoy life as we go, teach others what we went through maybe others are going through the same and don’t know it let’s do Lupus awarenes.

      Thank You
      M.

      • lwayswright says:

        I’m glad you found this blog and that now you feel less alone. I would suggest that you go to the Lupus foundation of America website. You will find so many helpful things there that will help you get in touch with information about lupus walks, support groups, other bloggers etc. Keep me posted on how you are doing. And if you ever have questions don’t hesitate to ask!!!!

  3. sherriet says:

    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.

  4. Karen says:

    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.

  5. jennyspeaks says:

    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! 🙂

  6. bint alshamsa says:

    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!

  7. AlisonH says:

    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.

  8. nowiz says:

    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.

  9. lupusranting says:

    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

  10. Michal says:

    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.

  11. Laine says:

    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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  13. Rachel says:

    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

  14. Zoya says:

    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

  15. Min.Tracey Estes says:

    I can relate to EVERYONE here, I too am a survivor of Lupus (SLE). Also, I moved away from my family and friends a few months ago because I was always the topic of discussion that “I was killing my mother who is now 70 yrs.old”. For some odd reason people in our family and a few of her friends thought I was the reason my mother was always on the go. (Actually she is a real go-getter herself).

    But problem with that was I lived in one town, and she in another. I even stopped riding to church with her because of the talk. (Church was near my house). The stress alone from all the gossip and lies, and unwanted phone calls made me decide to leave my home of 8 yrs. and move to a place where I do not know anyone, and have no family.

    If it is GOD’s will that I die, I must die of something right? I rather die in peace..lol I have been battling another flare up for over a month now, and had to go to ER the other day and found out my Kidneys are now effected.. SO along with my sexy blazing, blistering rashes on my hands and arms, and my own personal butterfly for the face, and the pain, swelling and NOW wanting to throw up every 5 minutes, I count it all Joy according to the word of GOD.

    But, it is just me and Jesus now, even my church family does not understand. I have had the scriptures slung at me, belittled, low rated you name it because of battling Lupus. Now I am on my second church with the same old problems surfacing again.. SO I understand how each and everyone here feels. It is tough not feeling 100% everyday, or even when you think your next breathe will be your last..

    I think we stay strong because of people like you who are willing to give others an outlet to vent, rant and rave about the unjustice that Lupus survivors are often met with.. GOD Bless you everyone..

    Respectfully, Min.Tracey Estes

    • lwayswright says:

      thanks for stopping by. It is really hard to help others to understand this disease and what it is like to live with it on a daily basis! One minute we feel up the next we feel down..it is a roller coaster that never ends and people don’t understand. My brother is the pastor of a church (he actually started the church) here in Phoenix, and I do attend as often as I feel good enough to go. My son plays in the praise band there about 2 times a month so I go when he plays. But I am often asked why I am not there every sunday. And people don’t always get that just getting out of bed and getting ready to go someplace can take it out of me for the whole day. I sang on easter Sunday for the first time in a long time, at two services..standing for almost two hours straight, not to mention the nerves and stress that goes along with all of that..and I spent that whole night and the next day throwing up. But guess what…even in that mess, in that place of pain and weakness Jesus is there to meet my needs and comfort me back to sanity. And I have to cling to that everyday…the times when I get angry and frustrated at what I am dealt I have to hang on to the belief that there is a plan..there is a purpose to what is going on in my life. I will be praying for you…keep me posted on how it goes in your new home. Try to enjoy those moments of wellness that you DO get.

    • Min.Tracey Estes says:

      ~*~UPDATE~*~ I have moved back where my family lived at once they moved away, the LUPUS is NO LONGER found in my body; ANYWHERE!!! I have been given profile after profile and now it cannot be found, not even a trace of ever having it!!!

      NOBODY but GOD!! LUPUS nearly took my life many times, I laid in a hospital bed flat on my back fighting for every breathe I took; had to learn how to walk again and everything..

      Got a divine visitation from the LORD, He came and stood beside my bedside; shinning brighter than the sun, and spoke these words to me:”I CAME THAT YOU MAY HAVE LIFE AND HAVE IT MORE ABUNDANTLY”.. I lifted up my eyes and responded:”Then help me to recieve that abundant life and to walk in it”..

      I am not going to tell you that I jumped off my bed totally and instantly healed, but I will tell you that I was up walking around on my own strength within a few days, and I have gotten stronger everyday since! I am even working out and juicing and stuff again..

      My Doctors and Specialist are all in a tizzy, scratching their heads and trying to figure out just what happened…lol A MIRACLE HAPPENED, THATS WHAT HAPPENED!!!! I was on so many different medicines and treatments for Lupus that I could fill a huge walmart bag full…

      I am no longer on the treatments, I take mostly Iron & Multi Vitamins and 2 Asthma mediciations, I am so happy; I just cannot put into words how excited I am…lol Oh and my long (Butt Length) hair, had to be shaved off due to coming out and huge hot spots and sores on my head.. It too is growing back healthy and beautiful…

      I pray that everyone here gets the same Miracle as I recieved.. I am so happy to be able to stand long enough and cook and clean for myself! I no longer need a wheelchair, walker or shower chair or lift chair recliner…I can do everthing I could not do before, and I am so thankful…

      I opened a getting fit for life page on Facebook, please join me there and invite your friends, we have a natural plan for getting our life’s back.. Look me up under :”Min.Tracey Estes” and inbox me and ask me to add you..

      Be encouraged everyone, and do not give up on yourself, each other or GOD!! He is still in the miracle working business!!!

      GOD Bless, Tracey

  16. Angela Rice says:

    I am dealing with Lupus as well. Started with Reynauds. Kept feeling sick, tired(lazy), skin problems. Found a new rheumatologist who did a ton of blood work and told me yes I have Lupus, sceleraderma and Sjorgens. Thankfully right now I present with mild symptoms. My kidneys are functioning properly, lungs excellent (thankfully I stopped smoking last year!), I have notice a lot more hair falling out (I have been using Nioxin hair care to help keep it looking thicker). We are doing everything we can at home so that this does not control my life completely, we even have shaded half our pool. I am a career firefighter/paramedic and sometimes the fatigue is almost unbearable… Working 2 hour shifts can wear me out on my “bad days”. But I am adjusting to my new life and learning how to deal with it. My husband and family are very supportive and that has helped with my depression and adjustment. Thanks for posting the blog, I like to read about others with Lupus, it reminds me that I am not alone and others have it much worse, so I should be greatful that right now I have only mild symptoms and not to feel sorry for myself..

    • lwayswright says:

      Thanks for your comment. I wish you the best of luck in your journey. It can be hard sometimes to cope, but you sound like you have a great support system!!! Keep me updated on how you are doing!

  17. holythyname says:

    I understand and know what you go through. Your blog sounded as though I’ve written it. I have Lupus, RA, Sjogren’s, Raynaud’s, bronchiectasis, and others. It is true, no one can tell what we are feeling or going through because it doesn’t show. I look normal to everyone. I too am exhausted and in pain most of the day. Many times when I awake in the morning, I wish I didn’t. I wish I could have died in my sleep.

    • lwayswright says:

      i understand how you feel. please if you ever feel like you need to talk or anything, just post something here and i will try to get back to you as soon as i can. but please, although it may seem like the best solution, dont look at death as the solution. there are people who love you and want you around. just keep hanging on. for me, i have found recently that excersize, even when i dont feel like it, has helped. a slow walk, or just walking in place while watching tv helps. writing my thoughts and feelings down, hot showers, cold packs on my back, neck and even head sometimes. keep holding on!

  18. Bill Howdle says:

    I commend you for your strength and honesty as you share with the world. I knew there was a terrible disease called Lupus but nothing about it.
    You are providing needed information to all that stop by and most importantly support for fellow sufferers.
    Bill

  19. Angela says:

    I was diagnosed last May 2012…. I always thought feeling like crap was because of something else… I have been battling Raynauds since 2005… I have since been diagnosed with Sjogrens, Sceleraderma… Unfortunatley, but not so unfortunate my career is fire/EMS.. Physically demanding and I am unable to control my environment… headaches everday, nauseous every day and severe joint pain durin the summer… Blue fingers and toes during the winter… I hate having to change everything i have loved to keep from being sick.. A few months ago I had my first Lupus flair, hated it and how it made me feel but I know I will continue to be sick till the day I die.. I really feel for those of you who suffer more than I do.. I hope that one day the medical world can find something to stop this or at least seriously reduce the signs/symptoms… Love to you all and hope we all have a better year in 2014!

    • Angela says:

      Angela and Angela Rice from 2012 are the same people.. 2012 comment i wrote 2 hour shifts, I meant 24 hour shifts.. Not looking for sympathy! I hate feeling like crap, I feel lazy and tired… I would live to hear from all of you, how you cope… Have you found anything that helps with the ‘lazy’ feeling? And do any of you suffer from joint problems more in the summer than winter? I have skin problems as well… If I get a cut, scratch or bruise on most any part of my body, I get this itchy hive… Its like my body is attacking the cuts, scratches or bruises.., anyone else?!!

      • lwayswright says:

        Angela I have a real hard time in the summer time with the heat! I also have skin issues, I have had shingles and joint pain can sometimes be overwhelming. Oftentimes there is nothing one can do about the fatigue except let it take over and rest. Listen to your body cuz it will let you know what it needs. Medications can be overwhelming. Trial and error seems to be the way it plays out for most of us. Keep open dialogues with your doctors. If they won’t listen to you and really hear you then find another doctor. They are your advocates but you need to be your own advocate as well. If you have any questions please feel free to ask!

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