Book Review – How To Be Sick

I normally don’t write book reviews on here but felt I needed to get the word out about a recent one that I finished. Mostly because it has to do with being ill/sick and I know some Spoonies/Lupies follow me. The book I am talking about is called, How to be Sick by Toni Bernhard.

As pictured, I bought the paperback version but you can also purchase this book as an e-book or Audiobook. I like to get my “nerd” on and highlight things to remember, and sometimes an electronic highlighter just doesn’t cut it (I love office supplies!). 🙂

I am pretty much making this my sickness Bible. Toni offers a great amount of examples which helps the reader think of ways they can apply it to their lives. And if you are a Byron Katie fan, Toni mentions her and includes some of her quotes.

Here is a list of the chapters to give you a better example of what you will be reading.

1. Getting sick – A romantic trip to Paris
2. Staying sick – This can’t be happening to me
3. The Buddha tells it like it is
4. The Universal Law of Impermanence
5. Who is sick?
6. Finding joy in the life you can no longer lead
7. Soothing the body, mind and heart
8. Using compassion to alleviate your suffering
9. Facing the ups and downs of chronic illness with equanimity
10. Getting off the wheel of suffering
11. Tonglen – Spinning straw into gold
12. With our thoughts we make the world
13. Healing the mind by living in the present moment
14. What to do when (it seems) you can’t do anything
15. Zen helps
16. Communicating with care
17. The struggle to find community in isolation

As the last chapter finishes, the author has a guide to help with specific challenges (I loved this part!!). A couple challenges include: Blaming yourself for being sick, feeling ignored by family and friends, and suffering due to uncertainty about the future.

I want to thank my cousin, Rebecca, for recommending this book. And of course, I would like to thank the author for writing it. 🙂 The author has two other books for sale, How to Wake Up and How to Live Well. I currently have How to Live Well on my bookshelf and can’t wait to start it! 🙂

 

 

CDC awards multimillion-dollar grant to build lupus awareness | Sky Health News

http://skyhealthnews.org/cdc-awards-multimillion-dollar-grant-to-build-lupus-awareness/

Lupus and Fibromyalgia

Well, so much for trying to get blogs written for Lupus Awareness Month! Hahaha! Oh well, at least I was able to get a couple done. And that is just how a person with Lupus needs to think; if it’s not done, then it’s not done and not to fret about what did not get done that day. However, I am fully aware that this easier said than done. At times I struggle with the frustration of how to let things go and\or take one day at a time. And honestly I don’t know if I would have learned these lessons, if not for Lupus.

This month is also Fibromyalgia Awareness Month with the National Awareness Day being May 12th!

Lupus and Fibromyalgia are so similar that some days I can’t tell which disease I am dealing with. Below are some Fibromyalgia symptoms

Thank you for taking the time to read these awareness posts! And remember, knowledge is POWER! 🙂

World Lupus Day

 

Yes, today is World Lupus Day! Get the word out as much as you can!

Flares are a bitch. You never know how long it will last or when it decides to pop up. In high school, I always became sick with something right when school would start up in September. I wasn’t diagnosed yet but we just blamed it on bad luck. When was I diagnosed? In August, just a few weeks shy of starting college as a freshman. My mom and I can’t help but wonder if the stress of going back to school is what caused me to be sick around that time. And that perhaps, in high school I had Lupus all along.

Isn’t the common flare trigger above just crazy? But it is the truth; Lupus really restricts your life. Consider no longer being able to spend hours outside in the sun without the proper equipment such as sun block, a hat, shade and clothing that covers most of your body. Not only does the sun bother me but the heat (or humidity) as well. If I spend an amount of time in the heat, I usually need to go somewhere with cool air and nap otherwise I am basically a zombie.

That is all I can do for now. Thanks for reading! 🙂

Lupus Awareness Month

For the month of May I was going to post something about Lupus every day, but my Lupus had other ideas! All of last week I felt like crap. I was nauseated, had a fever and wicked heartburn. I got heartburn from eating peanut butter toast with a glass of water. And no, I am not pregnant because there is another part of the equation that is missing for me to be pregnant. Those symptoms sound very much like the flu, yes? That is what I deal with as part of my Lupus. Sometimes I’m not even sure what my nausea is from, it could be the disease itself or my medications.

Literally, everything is a SURPRISE with Lupus. Including when it decides to be active, or when it decides to take it down a notch. It is extremely frustrating if you are a planner, like yours truly. It didn’t bother me so much when it wasn’t too active while I held a full time job. But ever since when my Lupus became more active and it forced me to stop working, I have had to learn to fly by the seat of my pants. I have had to take one day at a time and sometimes even one moment at a time.

So NOW for the month of May, I plan on posting bits of info and/or pictures relating to my illness. I can’t promise you anything but will try my darn hardest. 🙂

 

On Facebook you can change your profile picture to help raise awareness. Yes, this is me.

 

What happens to someone with Lupus (taken from Lupus and Me Facebook page)

Old sdloopy posts – Another Fun Filled Lupus Day

7/24/11

Another Fun Filled Lupus Day

Yesterday was another day of battling my Lupus flare. It was somewhat manageable in the morning as I helped clean my sister’s place. I was doing ok but not after too long, the fatigue and pain had let me know they were here to stay for the day. Soon, each individual step was hard to take. I plopped down on the couch and let my head fall back. I have completely no energy. Even the easiest task of keeping my head up was exhausting. I mentally debated if I should go to my friend’s wedding reception that night. This would be my third wedding missed in a row due to my Lupus.

I wish for a cloudy, stormy day. This heat and sun only make me feel worse. Which is ironic because it is usually opposite for everyone else.

Storm looks at me with her big, brown, puppy-dog eyes, asking if I will play just one more time. But she already knows the answer. I get on the floor to lay down, curling up next to her and try to take a nap. It’s funny how as child, that is the last thing you want to do but once you’re an adult, you want to take them all the time. Well, it’s that way for me anyway. The nap is a failure and I become agitated.

I called my mom to vent and began to cry (while making a mental note to see my therapist next week). I cant decide if I should put myself through the extra pain and exhaustion for the reception. I feel guilty and feel like a bad friend.

“I’m sure they understand,” she stated. Which made me think, ‘But do they really?’

She helps me see past some of the denial and I now see (and know) that I should stay home and take care of myself.

I start wondering what I will have for supper. The only thing I am craving is a turkey sub from Mr. Goodcents but I have no idea how I will get one. My small meal isn’t worth having them deliver it to me. I start to ponder if I could ask Mel to go or if she would even go for me. I throw that idea out the window and begin to start talking to myself, pointing out that the trip would only take a couple of minutes.

Motivating myself does not work which means cooking something is clear out of the picture. I realize I need to figure something out since I never had any lunch. So, I open a can of fruit cocktail and wait for tomorrow to enjoy a meal.

I haven’t lost all hope that I have to miss the reception and try to nap a second time. And I finally fell asleep! I still have my symptoms but they seem to be giving me a break. E comes to pick me up and we go to the reception, or so I thought.

We arrive at the Japanese Gardens and listen to its’ silence. We expected to hear music, people talking, and laughter so we figure it must be further into the garden. We walked all around and didn’t find anyone. I texted the groom where the reception was but didn’t think he would reply. But I tried just in case. E brings me back to my temporary home, at my sister’s, and we spend the rest of the night listening to E tell high school stories.

When getting ready for bed after E left, I noticed a text from the groom. By this time I knew there was no possible way to make it while trying to stay awake and driving at the same time (sorry Shane!!).

I have to learn to stop trying to please everyone and take care of myself first. I need to realize on my bad days, not to keep pushing myself and stop being such an overachiever.

Sometimes in the back of my head I wonder if I have “fully” accepted my Lupus, or just think I have…

 

So exhausting

 

 

*photo taken from Facebook *yet, in a way, I am used to it…