About

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This blog will share the realities of living with an incurable, and chronic disease called Lupus. Lupus is an autoimmune disease that can strike your body on any level and several all at once as well. It can mask itself and pretend to be other diseases. It is often called the great imitator. To learn more about lupus and the ways it can affect you or your loved ones, go to www.lupus.org. It will show you the symptoms of lupus, as well as educate you on ways to help others who are afflicted with this disease.

My name is Jennifer, and I am a 50 year old woman who was diagnosed with this disease 16 years ago. I am married and have three children and eight grandchildren. I am doing this so that people will learn the harsh realities of the disease, and also because it can be hereditary and run in families. It is predominantly found in women, although men can have it as well. I have seven granddaughters and one grandson and I never want them to have to go through what I have. It is to that end that I am doing this blog, to make people more aware, and to help find a cure in my lifetime, if possible.

Please enter this blog with an open mind and know that I am writing from the heart about my own experience with the wolf (as lupus is called). There will be good days and bad days and I will try to share them with you. I will not tolerate, nor allow publication of any hateful or obnoxious remarks. I will be accepting kind comments from those who are eager to learn about lupus, or those who suffer themselves or are waiting for a diagnosis.

Relax and enjoy the blog…

37 thoughts on “About

  1. Rachael

    I am 27 and was just recently diagnosed with Lupus and LOVE your blog. This has helped me so much. Not only in helping me know I’m not alone but also in helping my family understand what I’m going through:-) Thanks again!

    • Rachael you are definitely not alone! My goal is to find information and put it in this blog so people don’t have to go all over the web. I also want to put validation onto lupus patients and our feelings, good or bad. No two lupus patients are alike, we are like snowflakes! Please feel welcomed!! Join in the conversations and share your thoughts and feelings! Thank you for your kind words!~Jen

  2. Jennifer: I am enjoying your blog and glad to see you using Carol’s artwork as a beautiful backdrop! I love her artwork and featured her artwork in a blog post last July. As part of my Lupus Awareness activities this month, I am doing a series of daily spotlights on lupus bloggers, and want you to know your blog is featured in my post today. Thank you for your wonderful work promoting lupus awareness, and your candor and perspectives on your daily walk with Lupus. Lupus Adventurer

  3. Rachel

    Hi Jen – I am so worried about my 80 year old mother, and lupus patient, tonight. She has come down with what I assume is common cold, but what if it’s flu or just a severe lupus flair. Her temperature has gone up to 99.9. We are not calling doctor – likely waiting until morning. I hope I’m not up all night. I love how beautiful your site is. I’m thinking lupus is one big family now.

    • Rachel

      Hi – Just updating – I researched on lupus.org and mom’s fever went up to 100. She called her doctor and sees him tomorrow.

  4. Anonymous

    Hello Jennifer,

    I would really like to speak with you privately. I am in desperate need of advice and I came across your blog whilst looking for answers. I would be extremely grateful if I could have your e-mail. Thank you and take care!

    -A

  5. Anonymous

    Hi Jen. I was unable to find your email address, but I stumbled across your blog this afternoon and read your article on emotionally abusive men. I am absolutely floored after reading it, as I am currently in an almost identical situation. Reading your article gave me strength, to sound cliche, and proved to me that I am doing the right thing by ending it and standing up to him, despite his attempts to turn it around on me and make me feel as though I am in the wrong. My breaking point was a few days ago, when my partner explicitly told me that I was going to be the end of the relationship because I am not trustworthy and ‘going to do something shady’ in a few months. He went on to say that him and I were only in this because neither of us wanted to do the breaking up, irrespective of our ‘inevitable fate’, and never acknowledged the unreasonable sacrifices I was constantly making to keep him happy. I did not feel as though there was any coming back from his blatant disrespect towards me and the manner in which he was able to talk to and treat me. I had to leave you a message because I think this article has saved me to a degree and I would like to sincerely thank you.

    • I am so glad you liked the post however, if it is the one I am thinking of I must admit that I did not write it. I reblogged it from another blogger. It struck a nerve with me too.

      I left my p.a. Husband in may of last year. Unfortunately, circumstances proved that I could not make it on my own so I was asked, by him, to move back in. I did that in October.

      In some ways I feel like a fraud. I seriously need to be on my own, yet because of my finances, and such, I am not able to.

      You see, I am on disability. That means I now have a monthly income roughly equal to what I used to make in a week. Trust me, it is not a lot. I have tried to get on section 8 or income rated housing but one bedrooms are hard to find. They have two years or more waiting lists!

      In the end I did what I had to do right now. I do not have family who could help me. My kids are all struggling to make ends meet and I do not want to be a burden.

      So, in some ways I feel like a fraud. Really I know I’m not but to go back into the situation after being out has really unsettled me. Sadly, I know I am not the only one to do this either.

      If you feel you need to leave, and can do it, then I say do what you need to do. I will be thinking of you in my prayers with hopes you can do what I was not able to do. Please keep in touch and let me know how you are doing. I do know of some resources that can help you if need be. Good luck and Godspeed.

      • merulin

        Hello my name is Simona.i am also having a difficult time because i met a man who treated me like s…t,the thing is that i can’t deal with that because i blame my self for it.
        I believe that i caused he’s behavior and although we don’t talk anymore it seems that i am the one who haven’t move on.What i wanted to ask is that a man who treats a woman bad its only because he does not love this woman?And when he finds another woman that he will love her he will treat her nice and always good?The abusive behavior to a woman is caused by no love and respect?

  6. Anonymous

    Hi Jen,
    I stumbled across your blog today, and I wanted to reach out to you. I work with the Lupus Foundation of America, Greater Ohio Chapter. I’ve been reading your posts, and I find them incredibly inspirational in a way that is real and valuable to patients. I was wondering if you would like to share your story with patients via our organization as well? If you would, please email me at caitrin@lupusgreaterohio.org.
    Either way, thank you for sharing your experiences. Lupus is so full of unknowns and mystery; the more sharing and community-building the better!

  7. Hi,

    I came across jenlynn401.wordpress.com and wanted to give you a peek at our new piece focusing on celebrities that are living full lives despite their health conditions.

    Here are some of our health superstars’ amazing and inspiring stories, including Halee Newby and her lupus awareness campaign:

    http://www.everydayhealth.com/healthy-living-pictures/born-this-way.aspx#/slide-1

    I think your readers would love this interactive slideshow. Share the link on your site — I’d love to give you a Follow Friday Twitter shout out to our 100,000+ followers!

    Best regards,
    Blaine

    Blaine Shranka
    Outreach Director
    Everyday Health
    blaine@everydayhealth.com
    345 Hudson Street, 16th Floor
    New York, New York 10014

    FOLLOW US
    twitter.com/everydayhealth
    facebook.com/everydayhealth

  8. Diane Lynch

    Hi Jen,
    My name is Diane, and I have had lupus for the last18 years. I have stage 3 kidney disease and am now on methotrexate. My friend Sheila emailed me about you and I signed up to your blog. I like this blog beacause I feel alone with this disease. I have no family support. Just my close friends are there for me. Sometimes the pain is so bad i just want to die because it hurts so bad. I am in therapy which helps. I am excited to be a part of a group who is just like me. I never been on a blog so forgive me if I don’t know what I’m doing. Thank You for starting this. I am sure it will help a lot of folks who are suffering like me.

    • Well hello Diane and welcome!

      I am so happy to make your acquaintance! As a rule, I try to find articles online that would be of support tot hose of us with autoimmune diseases. I have had lupus for over 20 years now. I have had limited kidney involvement (basically just kidney stones). I do have cns lupus now being very active and causing me to have neuropathy in my legs. I totally understand the feeling of being alone.

      I started this blog because of lack of support from my family and friends. It can be so hurtful when those you love and trust do not support you in your journey. This blog became my outlet so I could just be myself and discuss lupus without feeling like I am talking to a wall. In my house, prior to my separation from my husband, if I said anything about lupus I was told that he did not want to talk about it right then or some other excuse for not being supportive. I was belittled for sleeping at odd hours, accused of being lazy, and overall just made to feel like my problems were not worthy of mention. It was hard.

      Since I started this blog, however, I have found that I am not alone. There are plenty of others who know these feelings all too well. We are able to come here and vent our darkest thoughts without fear of judgment, free from censure. Feel free to jump right in and join the conversations. You are welcome to stay as long as you like too. I am glad you found us here.

      Thanks for sharing your story with us and I hope we can become friends! ~Jen

    • Well hello Diane and welcome!

      I am so happy to make your acquaintance! As a rule, I try to find articles online that would be of support tot hose of us with autoimmune diseases. I have had lupus for over 20 years now. I have had limited kidney involvement (basically just kidney stones). I do have cns lupus now being very active and causing me to have neuropathy in my legs. I totally understand the feeling of being alone.

      I started this blog because of lack of support from my family and friends. It can be so hurtful when those you love and trust do not support you in your journey. This blog became my outlet so I could just be myself and discuss lupus without feeling like I am talking to a wall. In my house, prior to my separation from my husband, if I said anything about lupus I was told that he did not want to talk about it right then or some other excuse for not being supportive. I was belittled for sleeping at odd hours, accused of being lazy, and overall just made to feel like my problems were not worthy of mention. It was hard.

      Since I started this blog, however, I have found that I am not alone. There are plenty of others who know these feelings all too well. We are able to come here and vent our darkest thoughts without fear of judgment, free from censure. Feel free to jump right in and join the conversations. You are welcome to stay as long as you like too. I am glad you found us here.

      Thanks for sharing your story with us and I hope we can become friends! ~Jen

    • Diane

      Hi Jen,

      Thank you for responding to me. I would be happy to be your friend. I also have neuropathy. It is very painful, and the doctors want me to take drugs that make me feel over druged. That is bad for me as I have balance issues anyway plus I live alone. I tried lyrica, and norottin and that made me feel horibble. I felt like I was drunk. So I went off both of these drugs. Thanks for understanding me. I have a question. How do I share with other folks on your blog? Like I said I have never been on a blog so I may need some help to get myself in the grove of things. Thank You again for all your support Jen. God Bless You.

      • Hey Diane,
        I totally understand your issues as I just recently separated from my husband and have uprooted my life and moved into a little place of my own. Just me and my cat. I am on neurontin and it is working for me but still have pain at times that breaks through. I have been thinking about a life alert system because I keep falling. I worry so much that the wheelchair is coming. I need to figure out how you can talk to others. I think if you write comments they will get them. I always approve posts that are not spam. Hope that helps! ~Jen

  9. Shannon

    Hi jenn- did you get to the bottom of the it itching? Want to be sure you checked into hodgkins lymphoma. It’s the easiest cured cancer but when my 17 year old niece was scratching and leaving scars all over herself that ended up being what she was sick with. She Recovered well!!! Good luck!!

    • Shannon,
      My itching has gone away now but I am glad you posted this because it may help someone out here. Thank you so much! I wish your niece the brightest of futures! Thank you so much for sharing! ~Jen

  10. Hi Jennifer 🙂
    I was just reading about the auto immune condition I have, Behcet’s Disease, and stumbled across your blog. I recently started one as well, to follow my journey. I look forward to hearing what you have to say. I’ve learned a lot about many conditions themselves, but I’m excited to hear more from other people about what their day-to-day life is like.
    Take care of yourself, I know its a big job.
    Leah

  11. About Daily Living With Lupus I was recommended this web site by my cousin. I am not sure whether this post is written by him as no one else know such detailed about my problem. You are incredible! Thanks! your article about About Daily Living With LupusBest Regards Cassetta

  12. I don’t even know how I ended up here, but I thought this post was great. I do not know who you are but definitely you’re going to a famous blogger if you are not already 😉 Cheers!

  13. I’m impressed, I need to say. Really rarely do I encounter a blog that’s each educative and entertaining, and let me let you know, you’ve got hit the nail on the head. Your idea is excellent; the problem is one thing that not sufficient people are speaking intelligently about. I am very pleased that I stumbled across this in my search for one thing relating to this.

  14. I am so happy I found your blog. I was diagnosed with Lupus 2 years ago and my life has been going down hill ever since. I struggle with a spouse who has absolutely no care or compassion which has only added to the depression that I cannot seem to shake off. I am on Cymbalta, but do not find it helpful at all. Thank you for all the great information that you are providing, I will be following and checking back often..

    • I can totally understand. I actually started this blog so that I could vent both good or bad and get it off my chest. It has been therapeutic for me. Please feel free to comment and read. I have tried to post information on a wide variety of topics. If you want me to research something just let me know. I am glad I could help in any way. ~Jen

      • Kandyce (kandy) Byars

        Dear Jen
        Thank you so much for this blog. I felt like it was written just for me. I am sorry for your many losses. I have been going thru the same thing here. We lost my husbands father
        and does that take the wind out of your sails! LOL
        It was interesting to learn that your uncle had come from Tennessee. I lived in Tennessee for 30 years. I am 59 and am having a ruff winter with the Wolf. I am Also waiting to find out about getting on Benlysta.
        I live in Oregon now. The weather here is easier on me. But I too feel isolated right now. I could really use a nice lupie Internet buddy. Can you put me in that catagory? I will do anything to help you get the word out.
        Thank you for listening. Your blog is a God send! :-))
        Have a good week-end.
        Sincerely,
        Kandyce Byars

        • Thank you Kandyce!

          I totally understand and our losses are not quite over. However, it does seem to be slowing down a bit lately.

          As for moving, we have lived in kentucky, tennessee and georgia and from tennessee down I seem to have fewer flare ups and problems. I am not sure if it is the more milder climate or just the locations themselves. Ohio seems to be expecially bad for respiratory ailments and I have developed COPD in the last year so it definitely has affected me.

          As for benlysta, I have postponed the treatments for a bit. I could have them and want them however, my family life has been a bit unstable lately and I just want things to slow down a bit before I commit to the treatments. I know, crazy but true. I did receive benlysta while I was in a drug trial and it did work! I was on a tiny dose but even that little bit helped me more than I knew. After coming off of it (the trial) I went into a bad flare that has yet to leave. My fibromyalgia reared its head at the same time so needless to say, this winter has been gruesome health wise.

          I am glad you find the blog interesting. If you would like to submit your story, I will gladly post it for you. The more we can share, the more we help others who are struggling. As for the lupie friends, I accept. You can find me on facebook. My name is Jennifer Pieratt Cook. Join in and share away! I have quite a big network of lupies who all help each other.

          Thanks again and hope to hear from you!

          Jen

  15. Hey Jennifer,

    I’m glad that you’ve taken to bringing more awareness to Lupus via blogging. We recently created a Lupus Infographic (http://www.achieveclinical.com/news/lupus-a-closer-look-at-the-autoimmune-condition-infographic/) that I’m hoping you’ll approve of. I’m available for any questions that you might have.

    Should you want to share the infographic with your readers by adding it in a post.

  16. Marian Mc Namara

    Hi Jennifer,
    Just to let you know that I think your blog is great. I was diagnosed with Lupus three years ago. I have various complaints, joint pain, psorasis, panniculitis, fatigue, migrane and the newest complaint paresthesia in one of my legs apart from that Im in great shape!
    I think oyur blog is brillaint there is so much conflicting information on the net that its great to find one blog that has the information I need. I live in Ireland , lupus is’nt a very common condition here due to the low population,so the support network is pretty much non existant.
    Keep up the good work and I hope your goods days out weigh the bad

    Kind regards

    Marian Mc Namara

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