Just so you know, I really, really don't like talking about what ails me. I find it boring, and well, nobody wants to hear it! It's TRUE...we all know "That Woman", the woman who, when you innocently ask her "How are you today?", and she actually goes ahead and tells you all the bad stuff that might be going on in her life. Stuff you really didn't want to hear...you were just making pleasant conversation, right? Trying to be polite?
Well, I was asked by a very nice local friend the other day just how I was doing, and when I replied, "Fine, thank you", she replied, "But I heard you haven't been well lately...you sure LOOK great!" Which got me thinking...about how many of us hide invisible illnesses, and how somedays we might look pretty great on the outside, but feel like HOLY S*%T on the inside. And how brave people like us have to be, because (with the exception of our families and our doctors), NOBODY wants to hear it.
And in the case of most autoimmune diseases, nobody knows anything about them, because they're invisible. Cancer--we know all about that, what with the hair loss, weight loss and other physical signs that are so obvious. Sometimes those of us with hidden A.I. diseases aren't taken seriously, because most people don't die from them anymore.
I'm here to tell you that even though what I personally suffer from might not be terminal, it IS a death sentence...because I will suffer from this horrible disease for the rest of my life, and the medications I am forced to take WILL shorten my life. My doctor done told me so......
When people ask what Sjogren's Syndrome is, I usually tell them it's just like Lupus, because Lupus, another autoimmune disease, is fairly well known. Heck, I didn't know what Sjogren's was when I was diagnosed...had never even heard of it, and how in the HECK does one pronounce "Sjogren's", anyways (say "Show-Grin's)?
Here's a little description of Sjogren's Syndrome for you, complements of the National Library of Medicine:
"Sjogren's Syndrome is a disease that causes dryness in your mouth and eyes. it can also lead to dryness in other places that need moisture, such as your nose, throat and skin. Most people who get Sjogren's Syndrome are older than 40. Nine out of ten are women. Sjogren's Syndrome is sometimes linked to rheumatic problems such as rheumatoid arthritis. Sjogren's is an autoimmune disease. If you have an autoimmune disease, your immune system, which is supposed to fight disease, mistakenly attacks parts of your own body. In Sjogren's Syndrome, your immune system attacks the glands that make tears and saliva. It may also affect your joints, lungs, kidneys, blood vessels, digestive organs and nerves."
Sjogren's affects everybody differently. I only recently have started having problems with severe eye and mouth dryness. My first symptoms (about 6 years ago--healthy as an ox up until then!) were problems with my blood vessels in my legs (which I now know is Vasculitis, common with Sjogren's patients) and EXTREME fatigue. Fatigue so bad that it truly felt like I was coming down with the flu, each and every day. I also found out that I have a pre-cancerous blood disorder, also common with Sjogren's patients, and will have to see an oncologist for the rest of my life (along with a rheumatologist, neurologist and ENT specialist) to monitor the extra proteins in my blood. After multiple bone marrow biopsies, I now know no fear!
My rheumatologist told me recently that, because I was on the youngish side, diagnosis-wise, my symptoms will only get worse in my 50's....can't tell you how much I look forward to the future sometimes!
I know that my perspective sounds bleak, but I'm just being very honest about how the disease has affected my life...and believe it or not, I AM optimistic about the future, because recently I have been feeling better than I have in a while, thanks to a pretty strong immuno-suppressant drug cocktail. And I know that so much research is being conducted, as we speak, on ways to improve the lives of those affected by autoimmune diseases such as mine.
If you'd like to read more about Sjogren's Syndrome and how it affects the lives of other women, I invite you to read my friend Julia's most EXCELLENT blog, called Reasonably Well, HERE.
Thank you for letting me bend your ear on this subject that is near and dear to my heart, because it is my wish that more people will become educated on Autoimmune diseases, as they affect the lives millions and millions of people ( and don't forget, mostly women!) in our country.
************************
And now onto the real reason I'm here...the FOOD!.......
Still working through Barefoot In Paris, Ina Garten's fabulous cookbook on all-things Frenchie. I prepared her very intimidating-sounding Boeuf Bourguignon for supper the other night....it really is just a basic beef stew with red wine. But I think this is the BEST Boeuf Bourguignon we've ever tasted! The beef was super tender, and the flavor of the broth was incredible....I do declare that this would make a mighty sexy Valentine's Day dinner for someone special!
I served ours with some toasted sliced of Ina's homemade Brioche (recipe, HERE) for dipping...all in all, a fabulous meal. To begin, cook a little bit of bacon in a large Dutch oven until lightly browned..............MMMM that smells terrific!...........
Remove bacon and brown beef, in batches.....
Set beef aside with the cooked bacon. Add carrots and onions, salt and pepper and cook until onions are browned.......
Add garlic and cook a little bit more...add Cognac ( I used good brandy), stand back and ignite a match to burn off alcohol........(ALWAYS pour from a glass, never the bottle, unless you enjoy emergency rooms).....
Check out the little flame action I caught here...scary!..........
Put the meat and bacon back into the pot, then add a whole bottle of red wine plus some beef broth.................
Add tomato paste and some thyme, and put the Dutch oven into the oven for about 1 and a quarter to 1 and a half hours, or until everything is very tender when pierced with a fork. Remove from oven and add a little bit of flour and butter, then the frozen pearl onions..........right outa the bag! As Ina would say, "How easy is that?"...........
Saute mushrooms until browned..............
Add to the stew. And here's what the end product looks like....talk about hearty comfort food!................
I'm too tired today to type out the whole recipe for you, but you can check it out, HERE (it's printable, too)....please come back soon for Ina's incredible Chocolate Truffle recipe, just in time for Valentine's Day!
TODAY I'M SO THANKFUL FOR.....
***Today's recipe--Wink ! has asked me to prepare it for him again, and soon! I'm thinking a great excuse for a dinner party!
***That Little Miss Thing's Valentine's care package reached her all in one piece ($85 for a 10 lb. box!) in freezing, snowy Paris...thank goodness I included a few sweaters and a new scarf in addition to her requested Skippy Peanut butter (outrageously expensive there).
***My husband Wink !, who made me laugh this morning at the gym, and keeps things fun!
TODAY I'M SO THANKFUL FOR.....
***Today's recipe--Wink ! has asked me to prepare it for him again, and soon! I'm thinking a great excuse for a dinner party!
***That Little Miss Thing's Valentine's care package reached her all in one piece ($85 for a 10 lb. box!) in freezing, snowy Paris...thank goodness I included a few sweaters and a new scarf in addition to her requested Skippy Peanut butter (outrageously expensive there).
***My husband Wink !, who made me laugh this morning at the gym, and keeps things fun!
Thank you dear Leslie for sharing who you are...your life...your experiences.
ReplyDeleteCompassion and Knowledge are the gifts that you gave us today...touching many lives in a way that only Leslie can do. I do believe the journey you are on will always be surrounded by Love...because that is what you are all about. Wishing you good health and abundant happiness always....
A real challenge to live in the present, while remaining optimistic about the future, I know!
ReplyDeleteLeslie, you are my hero. I thank you for sharing this my friend. If more people speak up and own being ill, then it won't be so invisible anymore.... I love you Les. Good Job. I stared a new blog... go to http://lisascountrygourmethome.wordpress.com and check out my posts when you have time. Im enjoying the writing as it is good for the soul to just think on paper! Love you my friend!!
ReplyDeleteI never heard of this but love your attitude about it..
ReplyDeleteThank you for posting the recipe..
Looks delish..
I really admire how you are handling this. I know it must be difficult Leslie, and am glad you have shared information on this illness so we can better understand what you are going through.
ReplyDeleteI've made Ina's Boeuf Bourguignon and it totally ROCKS! I've tried several of the recipes in her Barefoot in Paris cookbook including the chicken with forty cloves of garlic and the loin of pork with green peppercorns. For an easy side dish, you may want to try Ina's French string beans on page 160.(I buy the frozen THIN green beans at Aldi's).
thank you everyone...your comments mean more than you know! And Debbie...I shall try Ina's string bean recipe, and soon--always looking for great new sides!
DeleteThank you for opening your heart to us, Red. And thank you for explaining a bit what this syndrome is and does. We really do want to know, because we all care for and love you, but fully understand not wanting to be "That Woman." Your truly grateful attitude is inspirational and infectious. Well done, dear! P.S. The recipe looks marevlous, too. Thank you - I will definitely try that one! Thanks for the link to the recipe. xoxo -Megan Mayer (close to 80 degrees here in lovely Laguna!!!!)
ReplyDeleteHey Leslie, I am sorry to hear what you are going through! Your attitude is very inspirational! You're always so happy and chipper in spite of how you may be feeling! I'll keep you in my prayers! Take care of yourself!
ReplyDeleteSharon