tag:blogger.com,1999:blog-8824828113983189391.post3617078653624512930..comments2024-03-09T09:28:24.274-05:00Comments on Despite Lupus: Giving in isn't giving upSara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-8824828113983189391.post-24849892317667495392010-05-19T21:26:45.822-04:002010-05-19T21:26:45.822-04:00This phrase "giving in is not giving up"...This phrase "giving in is not giving up" has been with me since 2001, when I was diagnosed with Addison's disease...turns out I have "something like lupus," and not the Addisons. The cortisone and other prescription meds I was on saved my life and, since 2005, I have been a stay-at-home, homeschool mom. I had two life-threatening episodes that first year of illness and, I just knew that it was not my time to die and that I could, if I dug very deep, learn what could make me feel better and live better. I would say to all those who helped us so much when I was in very fragile health that "We're not just a body!" The life of the soul became central to my "healing story." Thank you for this inspiring blog. I "blog" too over at "Those That Wonder". My husband and I just bought a rental property, and I am the manager. I am frustrated at the moment because, during this semester, I have battled fatigue, joint pain and that awful internal "shakiness" that is a form of exhaustion that one really has to experience to believe. I know I am working too hard and need to be wiser, need to pull back and give in and pray more...Because my first two years of illness were so devasting, I am, in general, so blessed to be alive and enjoying my family. While my official diagnosis is MCTD (which in the truly awful days, I called "worn-out tissue disease) I know that I have lupus. After almost 9 years of living a very blessed life, I will say that the way this knocks you off your feet just when you are "standing tall" is soooo hard! I was doing so much these last three years and now I am back to struggling with my house work,getting tired from driving and nauseous and so easily fatigued. Well, thanks for lending an ear. I know you understand. As a Catholic, I feel that all the giving in that hurts me so much can help someone else -- that is a balm. You really hit the nail on the head when you talk about being forced, due to the limitations of ill health, to give up that which you had worked so hard to merit. In light of eternity, these sacrifices are so very valuable. Last, I really have to re-set priorities when a virus is going around (the kids just brought home a mean stomach bug from their Tues/Thurs private classes). I give up my plans and ask for help--which to me is still the hardest thing to do. Thank goodness my family is helpful. It is not always easy, and we are still learning how to better communicate. I have teenagers now (they were 1, 3 and 4 when I almost died)Hope to correspond more!Sarahttps://www.blogger.com/profile/16065189626418846450noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-49597709439847068562010-03-22T22:23:46.631-04:002010-03-22T22:23:46.631-04:00Mumbi - Oh, that guilt. That's exactly why I p...Mumbi - Oh, that guilt. That's exactly why I put the "guilt" section in Chapter 7. Because it's so very real and so very difficult to get rid of! <br /><br />What specifically worked for me was realizing the example I was setting for my employees. For so long, I thought I needed to push harder for their sake, work longer hours and make up for lost time (if I did miss) so that I could convey my committment to the team. But I was inadvertently showing them that I didn't care about my health, my body, any sort of work/life balance. And so they shouldn't either. I'm sure you do a much better jobSara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-15668598912541267082010-03-22T22:21:42.941-04:002010-03-22T22:21:42.941-04:00Sadaf - Thanks so much for sharing! I'm so gla...Sadaf - Thanks so much for sharing! I'm so glad that your lupus is under control at the moment and that you've been able to resume your normal activities. Well done - you KNOW you had something to do with it...after all, you allowed yourself the 10 months to recoup. <br /><br />And you're exactly right - everyone IS different, and our concessions have to fit our own lifestyle, needs and desires. The decisions aren't the same for everyone, but I believe the decision making process (the deliberation, the guilt, the reluctance to change, the desire not to give into the disease, the instinct to fight it) IS the same for most. And so that's the way my book is layed out - tackling those emotional obstacles one by one. I use the actual decisions I made (cutting off my hair or quitting my job) simply to illustrate my personal struggle with each obstacle in the process. My hope? That others realize that if I can overcome my obstacles in order to live well, perhaps they can, too. They'll be empowered to make whatever difficult decisions they need to (just like you did) in order to make life with lupus better. Again- great point...thank you!Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-34324907050313118862010-03-22T21:39:25.130-04:002010-03-22T21:39:25.130-04:00Leslie - Looking forward to it! Thanks so much for...Leslie - Looking forward to it! Thanks so much for taking the time to read the book. I'll get back to you and your questions soon!Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-64041679037219825952010-03-22T21:39:25.131-04:002010-03-22T21:39:25.131-04:00This comment has been removed by the author.Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-7505698992489378462010-03-22T21:31:59.856-04:002010-03-22T21:31:59.856-04:00What fabulous comments! Thanks to everyone for sha...What fabulous comments! Thanks to everyone for sharing - so happy to hear that you guys know what I'm talking about. <br /><br />Nicole - I'm hopeful that you, too, will see the benefits of a reduced work week soon. That's a huge step, and I commend you for making the connection and then taking action. That's such a big deal! You should feel so good about stepping up and making something happen. I found that as soon as my health DID start to improve, the pain I felt from not working began to lessen. In fact, that's when I decided to write my book. As the benefits of the changes I'd made became clear, I thought, "This is what I want to tell people about. This is what I wish I'd known years before." <br /><br />Best of luck and keep us posted on your progress.Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-71112569628026865742010-03-19T17:14:49.341-04:002010-03-19T17:14:49.341-04:00I don't know if I agree completely about havin...I don't know if I agree completely about having to quit working. <br /><br />I too was recently diagnosed with Lupus and was off work for 10 months. While I was off, I realised that it's not the work that was stressing me out - it was the complete unpredictability of the disease (I battled with symptoms for 2 years before a diagnosis and medication). Now that I'm on a treatment plan and responding well to that treatment, I feel like my old self again - back in control of my life - and I'm ready to start living as normally as possible. I'll be honest, though, one thing that I did concede on was not having another child. I have son from my pre-lupus days and we had 2 miscarriages during the last 2 years. So, while I didn't have to quit my job, I did quit trying to have another baby. I guess we all make concessions one way or another - it's different for everyone.Sadaf Shaikhhttps://www.blogger.com/profile/02374844486026161672noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-64606862175005480042010-03-18T09:41:56.644-04:002010-03-18T09:41:56.644-04:00Hi Sara,
I finally got a chance to read your book...Hi Sara,<br /><br />I finally got a chance to read your book and I posted about it on my blog today:<br /><br />http://gettingclosertomyself.blogspot.com/2010/03/despite-lupus.html<br /><br />I have a bunch of questions for you and would love to have you answer them in a guest post, if you would like to.<br /><br />You can e-mail me at gettingclosertomyself@gmail.com<br /><br />Thanks!<br /><br />LeslieLesliehttps://www.blogger.com/profile/13910940045470516414noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-54648905428859958812010-03-18T04:21:38.593-04:002010-03-18T04:21:38.593-04:00Am still struggling with work/lupus balance.
Ever...Am still struggling with work/lupus balance.<br /><br />Everytime am at home due to illness, i feel so guilty at not being at work and overcompansate when i get back (ofcourse i end up achy and exhausted).<br /><br />The fact that there're people out there who have better balance gives me hope.<br /><br />Thank you for sharing..Grace Mumbi Kihumbahttps://www.blogger.com/profile/07264747851934095143noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-3560769981515746062010-03-18T02:18:58.125-04:002010-03-18T02:18:58.125-04:00This post is so applicable to me at the moment. I ...This post is so applicable to me at the moment. I have recently been diagnosed with lupus but have had symptoms for over 6 years and continued to push myself including at work. <br /><br />The past year has saw my health deteriorate so badly that it finally become evident that lupus was the cause and the decision to cut my hours was basically made for me. I now only work once a week. <br /><br />It's been very difficult for me to accept that i just can't continue to live my life the old way because you are so right... it's just not living.<br /><br />To say goodbye to a career that i worked so hard for is devastating. But hopefully i will see the benefits with better health which will ultimately give me a life worth living.Nicolenoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-2992830797238635772010-03-17T13:51:17.099-04:002010-03-17T13:51:17.099-04:00Ah, yes. The reassessment. :)
I suppose the fact ...Ah, yes. The reassessment. :) <br />I suppose the fact that we even know enough to step back and take a break is indication of growth in our disease. For so long - thinking "tough", as you say, was the only way I knew how to cope. It's refreshing, I think, to have created other options for myself, particularly when those options leave me feeling a whole lot better!<br /><br />Best of luck with your kidneys. I'll be thinking about you!<br /><br />Thanks for sharing.Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-4664599924018609222010-03-17T09:51:09.517-04:002010-03-17T09:51:09.517-04:00You hit right on ..
With lupus, it is more of &qu...You hit right on ..<br /><br />With lupus, it is more of "living with lupus" than "fighting" it.<br /><br />I've been wounded in my battles of "mind over matter" several times. I tried to think "tough", but I end up on the hospital bed.<br /><br />Now, my kidneys are acting up,it time to pause a little while and reassess my directions - sigh ...lupiehttps://www.blogger.com/profile/07094327744142383965noreply@blogger.com