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Loving this series.
Re the side effects, it’s hugely important to work with clinicians who know the drug and treat LOTS of patients. Interleukin has NASTY side effects that can kill people, but they’re unpredictable: different people get different ones, and some are severe, others mild.
I read that it has to be managed in an ICU, but at a hospital that does a lot (like mine) it’s done in a semi-intensive unit. They simply know what they’re doing better.
This sounds like a fantastic book! I prefer following blogs over researching at this point. When my Emily was diagnosed, all that I wanted was to read what other people had to say (after my inital researching had gotten me far enough to ask the right questions). Through the blogs that I read, through the Mom’s groups I frequent online, I have definitely found that many kids will have the same symptoms that they claim are not related to their JRA. For instance, I thought we were the only ones dealing with gastro issues, but now that I have spoken with people, most of the kids that have JA have had some gastro problems.
Also, reading blogs like yours help parents, spouses, friends to better understand what our loved ones are feeling. I wish that I could spend just one day in my daughter’s shoes. Just to have an idea how she feels. Since that will likely never happen, I choose to learn through others. I appreciate what you do.
Hi Danielle, Yes, it is a great book. Did you read my remarks on the First page? You are so right – I have seen what you are saying regarding gastro issues and other things. And how else could you find those answers for Emily? :heart: I would not want to have to advocate for myself or my kids without talking to other patients or doing online research now that I know better.
Perhaps ironically, I don’t consider rheumatoid nodules “less serious.” Think about it: I was diagnosed in January, surgery March, Interleukin April and July, end of story. Meanwhile in May the leg broke. After the second repair in June I was done: I had to regain the strength for a few months, but after that I was done.
Can you IMAGINE having several treatments and that being the end of your problems?
I’m thankful your that comments add to this discussion. No, but I can’t imagine the time sentence you were given either. My hope is that many will be helped to fight for their lives by reading about your victory. It was sad that I recommended the book to someone who basically told me no thanks, there’s no hope. Cancer diagnosis does seem to do that to many people. Best alternative is neither diagnosis of course.
I suppose there are times when there’s no hope. I knew that might be my case. I experienced acceptance that this might indeed be the time when I take that final passage, out of this life. For several reasons I eventually felt ready for that, when the time came.
Over and over again, it’s “Everyone faces this differently.”
Thanks so much for this discussion. I wish more folks would chime in. 🙂
I commented in the beginning of this journal that I would be reading along, but was far behind before I knew it. I am caught up now and on chapter 13. I was able to do a lot of reading on my recent trip home.
I am really loving this book, my gosh everyone needs to read it! I am learning so much. Every patient should have this knowledge to get the best out of their health care. I wish I would have known Dave’s “four lessons” 20 years ago, I would be much better off. Lesson one: It’s up to me. This is huge people! If you aren’t an active participant in your health you can kiss it good-bye, period!! Lesson two: When your instincts say scram, scram. This happened more than I like to think of, and endured the consequences from not scramming! I paid with my health and lost function I can no longer get back. So incredibly important, I want to shout to the world and shake them up. Thanks Dave and Kelly and all who are shouting big time for us all.
Dear Ronda, I know you’ve been reading some over the last few weeks & so much going on in your life. Thank you for taking time to come here & make contributions on top of everything else you do. :heart: I too am learning so much from Dave’s example – and I had thought that I was already “enlightened” to a degree. Like you said, there is a lot of work to do. I’m so glad you are in this fight along side of me too.
Here I am again, Surprise! I have to catch up on my comments too, haha. I made notes on each chapter, things that stuck out to me or thoughts that came up related to experiences.
Eat like a pig, funny I adapted to this when my appetite waned and I kept losing weight. I bought full fat food products and forced myself to eat when it was time to instead of following an appetite I didn’t have. I have RA and some of us have appetite problems and muscle wasting “RA cachexia” possibly. I need to do more of the laughing and singing part. That should be fun! I can sing to my new grand daughter who won’t be judgmental.
Chapter 2
Thank God you went to the doc and did this x-ray, amazing! It makes me think sadly for all the people who avoid doctor visits and go too late,(Lesson 1,It’s up to you). My husband’s cousin was one such lady who didn’t bother with mammograms and had symptoms for quite awhile, but wanted to wait until haying season was over to see a doc. The cancer was too far gone.
Something else that stuck out:”My self awareness has grown”, on page 22. I believe this is an important natural instinct when our health is iffy. We should all pay attention to our bodies signs and symptoms even before our health turns. Before my diagnosis I had symptoms that had become “normal” to me that were not. I should have discussed them with my doctor.
Chapter 3
An unforgettable chapter on hope and the mind body connection! We tend to forget how important this is, at least I do. As I read I realized, I don’t have hope my new medicine will work and it hasn’t. How do I change this attitude? I’ll try educating myself further that this is medically possible and has worked for others in my circumstance. Education is power that can feed your hope. The paraphrased quote from Jerome Groopman’s book “The Anatomy of Hope” is incredible “When you believe there’s no hope, your biology shifts: it’s as if your cells give up, your system gives up; your body doesn’t do as well as it could if it had hope.”
Writing this reminds me I want to go read your post on evidence based medicine that begins: “On the fringes of medical knowledge, lives are at stake and medicine doesn’t have all the answers yet. What do you do?”
I’ll add this question that eats at me sometimes, why do some doctors act like they do when so much is unknown?
Thank you for this chapter another that really made me think.