CHRONICLYsILLy

Guest Blogger Day! Dieting for Diabetics

2013-03-13T15:02:00.004-04:00

Dieting For Diabetics

by: Marcela De Vivo

Wondering what to do now that you’ve been diagnosed with diabetes? Doctors usually drone on through a slew of lifestyle changes, including giving up your favorite foods (no!) and incorporating more exercise (the horror!). Instead of thinking of this as a massive overhaul, however, start adding in little changes to help manage diabetes. Studies have shown that people are more likely to stick to a new diet and exercise plan if it is incorporated gradually, through small and simple changes to what you eat everyday.

As someone who has a special needs member of the family, I understand how restricted diets can be a pain. A picky eater is doubly difficult to cook for when I have to consider all the dietary needs my son has in regards to his condition. But after cooking for him for several years, I’ve picked up a few tricks and have some of suggestions could really work well to help you manage your diabetes and weight loss with a minimum of lifestyle changes.

First off, the big “E” word. Exercise is key if you want to manage and lose weight safely with diabetes. You don’t need to start heavy weightlifting like the Terminator, or try insane high intensity interval workouts in order to reap the benefits of exercise. Simply walking when you “run” your errands actually accomplishes much of your daily exercise requirement.

And the added bonus of all that walking? You can save a lot on gas by doing all your trips to the grocery store or drugstore on foot. And you won’t be able to buy nearly as much as you have to schlep it back on your back—a half gallon of ice cream becomes much less tempting when you consider how heavy it is after a mile and how melt-y it is once you get it back to the house a half-hour later.

Dietary changes can be a little more challenging. Giving up favorite carb- and sugar- laden comfort foods can seem nearly impossible, especially if you’re under stress. However, becoming someone who pays attention to macronutrients and how many versions of sugar (glucose, fructose, sucrose, HCFS, dextrose, corn syrup, refiner’s syrup, the list goes on and on) appear in your food is a good place to start.

You may have to give up those tempting goodies for something a little healthier, but you just might start fitting into jeans that haven’t seen the light of day in the last decade.

However, it isn’t all deprivation. While watching sugar, carb and sodium content of snacks and meals will become important, there are an array of satisfying substitutes for old favorites, or ways to improve on the original versions. Nuts come in wide variety of flavors now—you can get cocoa covered almonds if you’re jonesing for a chocolate fix. Nut clusters are also amazing—sugary, salty, crunchy, and absolutely fantastic.

While cucumber slices will never replace tortilla chips, dip them in enough guacamole and anyone (ok, most people) can overlook their lack of carb-y-ness. Mini-cheeses are adorable and great as a snack on the run.

I’ve also seen benefits in food pairing when it comes to a “cheat” moment. If you are going to eat something that will cause your blood sugar to soar (like some fruits and all desserts), make it a point to combine it with some fat and protein to slow down the absorption of the sugar. Apple slices with peanut butter is actually pretty delicious (and addicting—I do not recommend eating straight from the jar unless you have better self control than I do). Dried fruit brings the flavor to some unsweetened, plain Greek yogurt for breakfast.

Try to focus on what you can eat. Substitutions are much easier than they were in the past, what with the low-carb craze and the rise in popularity of paleo-friendly diets out there. Spaghetti squash with turkey meat sauce? Yes, please! Losing weight on a healthy, diabetic-friendly diet has never been more delicious.

Marcela De Vivo is a freelance writer in the Los Angeles area who has written on everything from marketing, technology, and real estate, as well as a variety of health and wellness topics. She’s learned so much from her son and loves sharing that knowledge with others.

Guest Blogger: Falanya Curtis From A Lupie Existence

2013-02-04T18:26:00.004-05:00

I Don’t “Blame It On The Alcohol” I “Blame It On the Prednisone”!

I don’t know if you’re familiar with Jamie Fox’s song, “Blame it on the Alcohol” but it’s the refrain to that song from which I take the title of this blog post.

Now, I do not condone over-indulgence in alcohol, but in my strange sense of humor, this title popped into my head one day and it made me laugh – a valuable commodity these days.

So, just what am I blaming on Prednisone

Well…so many things! But I will only mention a few and to start, this:

See it?

See THEM?

Don’t look at me like that!

You know exactly what I’m talking about!
My newly formed chipmunk cheeks and the Hunchback of Notre Dame’s hump I’ve got going on!

Those lovely additions are the result of being on Prednisone

…a steroid, since 2008!
Here’s briefly how that came about:
I was sitting on the examination table in front of my rheumatologist after a painful routine examination. She would press on all of my tender joints, and other painful points, to the point where I wanted to kick that woman! However, my Christian principles always prevented me from indulging in that potentially satisfying reaction.
She was about to write me a prescription for a biologic to go along with the Methotrexate I was already taking, in an effort to reduce the level of inflammation in my body, when I informed her that this would be my last visit.

“Why,” she asked.

“I won’t have insurance after this visit.” I replied.

Confused, she asked why and I told her how my husband had quit his job and was moving to another state without me. In disbelief, she kept repeating the same question a few times,

“He left?”

“Yes”, I replied.

Shaking her head, she repeated,

“He left?”

“Yes,” I replied again. “He left.”

When she asked that very same question yet again, I finally caught on that this was apparently a rhetorical question. I can be slow sometimes.
So she crumpled up the sheet on the prescription pad that she was writing on and started writing a new prescription.

“I didn’t want to start you on this just yet. You’re young to be getting started on steroids but it’s effective and cheap.”
And my journey with Steroids began!
Well, sort of, but not really. She actually prescribed Prednisone for me the year before, on a trial basis, to see how I would respond to it, and boy did I respond!

I felt so much better after the first few doses

I called up my boss/friend and told her I was coming back to work!

My legs no longer felt as if I were dragging extremely obese children from each limb and I could walk with my head held high on shoulders pushed back – a stance I hadn’t been able to attain in months!

I loved Prednisone!

After 2 weeks, the trial was over and my rheumatologist had the information that she needed. My body responded positively to steroids. Instead of prescribing me more, she increased the dosages of my anti-inflammatory medications.

Blast! I wanted Prednisone! Little did I know what I was asking for.

Prednisone’s side effects are nothing to sneeze at!

If you take a glance at the long list of things that it can do to you body, you’d no doubt wonder why it’s prescribed even at all!

As one of my mother’s rheumatologists told her many years ago, “There’s nothing else out there like it.”

You see, Prednisone squashes your immune system in such a way that when my Lupus isflaring, to simply take 2.5 milligrams more reduces swelling and gives me blessed pain relief.

At the same time, if I remain at too high of a level for too long I increase my chances of something bad happening.

So far, I have exhibited the following things that I blame on the Prednisone:

Please Note: I’ve highlighted a few of my favorites to prevent you from reading on into eternity.

Heightend Aggression…

I don’t back down easily in a discussion, heated debate or argument anymore.

It’s like my cut-off switch has been disabled and the fail-safe mechanism that would signal to me that it’s time to shut up, is no longer operational.

I will argue a point, no matter how small, until I feel in my mind that everyone in the room understands where I am coming from and why.

This created some pretty “interesting” discussions between my mother and I, since she was usually the only other person in the room.
“No, Falanya, I did NOT say that.”

“Yes, you DID!” is my usual excited reply.

“I’m not crazy mom! You said Barney was grape colored!”

“I did not and I will not continue this conversation with you.” Was her usual reply.

“He’s purple, mom. PURPLE!!” I almost scream.
But not too loud, because although I might be under the influence of steroids, I’m no dummy!

That woman, while laid up, sick in her bed, will still manage to slap the fluffiness right out of my chipmunk cheeks with lightening speed.

Gnawing Hunger…

Have you ever felt your stomach writhe and cramp in pain as a result of hunger?

Now, let me ask you, have you ever felt this gnawing sensation in your gut with the presence of food?

Let’s say you have just eaten a full course meal with an appetizer and full dessert included. How do you usually feel?

I’m willing to wager that you can barely breathe let alone still be hungry!

Enter Prednisone.

Not only are you still hungry, but you are ravenously hungry and like a caveman you scavenge through the refrigerator for a small wildebeast to devour!

I may exaggerate a little, but I lie to you not!

Weird Fat Placement…

This side effect goes hand in hand with the gnawing hunger.

Eat like an insatiable animal, sleep hours on end like you’re the King of the forest, and you will gain a fat pocket or two and in some interesting places.

My cheeks have puffed up a little but I don’t have the distinctive moon face that so many steroid users exhibit (unless I am in some serious denial here) but I do exhibit the Hunchback of Notre Dame’s hump at the base of my neck and across my shoulders.

Mom had this hump for years and I used to love teasing her about it.

So the moral of the story little boys and girls is that if you laugh at someone else’s deformity, the same deformity will be bestowed upon you.

Prednisone is both a blessing and a curse as far as I am concerned

I can most definitely attest to the fact that it has helped me to be much more active than I once was but I can’t help but to think, at what cost?
For now though, as new and weird side effects continue to pop up, causing me to become more of a freak of nature,

I won’t blame it on the Goose, blame it on the Vodka, blame it on the Henney or blame it on the ‘Tron.

I will look at my pill case and blame it on the Prednisone.

~Today is a Gift and it’s a Lupie Existence~

Falanya Curtis
A Lupie Existence

There is no such thing as "I can't!"

2013-01-10T13:18:00.003-05:00

Good afternoon loves! Today has been a great day thus far! After getting back in the gym last night for the FIRST time post-diagnosis (almost 3.5 years ago!!), I am ecstatic to say that I am sore! (in a good way of course!) I am just out of a hot bath to soak my muscles after coming home from a late morning workout (I use the term workout loosely as I walk the treadmill in intervals bursting a faster speed walk and a steady but not fast past in between, and a little bit on the elliptical, as well as some stretching at the end as I seem to get very tight and spasm sometimes on the machines.

It is NOT easy, and I am far from being in good shape (Weight wise I am within a healthy range, which I attribute to my healthy eating and healthy lifestyle for the past 2-3 years)- I changed my eating habits and my lifestyle upon being diagnosed as i wanted to do everything possible and within my control to help and better myself despite Lupus. I am learning that I will NEVER be able to workout to the caliber I used to pre-Lupus- My body just will not allow it... But although I may have different limitations or modified workouts compared to other "healthy" 24-year-olds in the gym, My accomplishment comes in getting out of bed that morning, and fighting through the fatigue and pain and walking for 30 minutes on the treadmill, or 10-15 minutes on the elliptical.

Long story short, as I want to get to enjoy my iced coffee with vanilla soy milk (A post-workout treat!) There is no "I can't..." Just I can but with new modifications to fit my new and still fabulous lifestyle with Lupus!

'Tis the Holiday Season... To be Thankful!

2012-12-27T16:36:00.002-05:00

This holiday season ha flown by us and with New Year's Eve and New Years Day right around the corner- I am sure there are many of us that are feeling the fatigue and aches and pains of the holidays taking their toll on us! But this a year, aside from some fatigue (okay maybe a lot of fatigue-nothing that a few cat naps a day, some heating pads/heated blankets and a few 40-ounce coffees can't fix-right?- I hope LOL!) and minor aches and pains and a bum knee that is acting up- I am so thankful that I was able to spend the holidays with my friends and family by my side!

This year a lot of wonderful things have happened to me and that are hard to overlook- and despite having Lupus and my other collections of Autoimmune related illnesses nagging me, 2012 was a good year- and I am planning to have a GREAT 2013. This year I feel like I had a lot personal growth- and accomplishments for the first time despite my illness, or perhaps because of it( it does tend to motivate me to push myself to my limits and test what my body will allow me to do!) I graduated with my Masters, and got a job. Granted while it is part-time it is the first time I am able to work since being diagnosed with Lupus in 2009. I am hopeful that I will be able to hold the job and move forward in my career field of choice in the future.

And lastly- I'd like to thank all of you and wish you all a happy New Year and a great 2013! You all make CHRONICLYsILLy possible and without each and every one of you I would not have this fantastic site, my online Boutique/shop, or my fantastic facebook page that keeps me going each and every day! I hope to be able to share a lot more of your works, poetry, stories and artwork in the year to come so please keep it coming! I personally am a huge fan of poems and homemade videos that help others understand chronic illness, and help us grow as a community united to help spread awareness and shed a positive light on life with a chronic illness. So thank you all and I wish you all nothing but happiness and good health in the 2013 year to come! I am hopeful this is THE year for great things! Peace, Love and Hugs!

A CHRONICLYsILLy Share!

2012-12-18T13:43:00.001-05:00

Good afternoon Loves! I have a busy day today and am running off in a few ( i desperately need a nap or three, or perhaps a 40 ounce coffee but will have to suffice with my 24 ounce one I am currently downing and a short rest I snuck in this morning after breakfast!) I am blogging to you this afternoon to share a poem that was submitted by Nicole Schmelter- a friend from CHRONICLYsILLy's Facebook page! It is a beautiful poem and please feel free to comment on her poem and share how you can relate! She and I would love your feedback on how you relate to her written words! So without further adieu, I bring you Nicole's poem, "Life."

Life

by: Nicole Schmelter

Life has taught me to expand my focus not narrow it

Life has taught me to grasp every good moment as it comes along

Life has taught me that the greatest moments come unexpectedly

Life has taught me the corporate ladder is not that important

Life has taught me your family is who you choose it to be not who
you’re born to

Life has taught me that worries only make things worse

Life has taught me that pain is just another feeling to endure

Life has taught me that along with physical illness comes strength to
deal with it

Life has taught me karma can be misleading bad things or good things
can just happen

Life has taught me it’s up to me to decide how I will handle the bad
things

Life has taught me complaining only makes ME feel worse not better

Grasp each day and do what you can, what you can’t do will wait for
you until tomorrow

Take the time to take care of yourself; you are the only one who can do
so

Trust your inner instinct even if the news isn’t want you hope for

Concentrate on the good, even at the times when the bad is
overwhelming

Smile, everything you have read is true, you’ll feel better even if
for just a minute

Find time to laugh at least once per day, preferably many times

You are a role model to someone, even if you don’t realize it

Life has handed you challenges so you can teach others how to deal with
them

The Plum Blossom Foundation: Spreading Awareness

2012-12-12T13:32:00.003-05:00

Good Afternoon loves! Today I am coming to you to share a very inspiring video that was sent to me via email from the founder of the Plum Blossom Foundation! Here, you can take a look as Ida (the founder and an SLE patient herself), allows us an inside look into the most private aspects of her daily life living with Lupus and how she has overcome a great deal in her battle. She shares how it has help her treasure each and every day she is given, and how it has driven her to start up the Plum Blossom Foundation and advocate for more awareness for Lupus as well. Here is a look into her life, through a very emotional and touching video that truly hits home for what each and every one of us Lupus Patients deal with on a day-to-day basis.

Coffee Time and a Giggle!

2012-12-06T13:31:00.002-05:00

It's coffee time here, (my first of the day actually- as I have been having a morning cat-nap the last few mornings and then having my coffee after!). And one of my favorite things to do is blog over a nice, oversized, ginormous cup of coffee! I have been having two cups (mind you my cups are of gigantic proportions- but nonetheless- it's still ONLY two cups a day-HA!) and enjoying them more and more each day! Trying new flavors and bold brews, dare I say it, coffee is almost a hobby for me LOL!

I also have a humorous share for you all this afternoon, as I have been slowly, but surely getting into the holiday spirit (it's about time huh? There are 18 days until Christmas-YIKES!). I have started my holiday shopping from the comfort of my home (Thank goodness for online shopping), and am still in "brain-storming" mode for some gift ideas- and need to get my butt in gear- but before I do- I want to share this humorous cartoon I found that a lot of my chronically ill friends will relate too! LOL Even though the posts refers to Santa's old age and aging, I know you will all get a good giggle out of it, as we have all had to say our own "No-No-No's" around the holiday season. I know how hard it can be to turn down events and activities that we want to take part in- but listening to our bodies is always most important- Although I tend to over do it and push myself from time to time - as I know many of us do, especially this time of year so that we can enjoy a bit an indulge/spend quality time with our loved ones...I must be getting back to my freshly brewed java, so I wish you all a fantastic Thursday afternoon and evening, and hope you are all getting into the holiday spirit and can enjoy it with loved ones by your side!

It's A Wonderful Life!

2012-12-06T10:38:00.001-05:00

" Don't let a bad day, make you feel like you have a bad life."-Karen Salmansohn author and best seller at notsalmon.com (her site has lots of inspirational bursts, quotes, posters etc. and I am always looking to her for inspirational guidance. This morning, this poster caught my eye and is something I felt we could all relate to. Sometimes having a bad day takes things out of perspective for many of us and leaves us feeling down and out, in the dumps and as if our "lives" are "over!" Which, rarely, is the case. So today, on this wintery Thursday here in the northeast, try to live by her wise words and "Don't let a bad day, make you feel like you have a bad life." Have a wonderful day loves and remember it is a wonderful life!

Coffee Time!

2012-12-05T16:26:00.002-05:00

It's coffee time around these neck of woods (my second of the day- even though it is like a 32 ounce mug LOL- it is still ONLY my second!) and I am having a relaxing day. Coffee time is almost like an afternoon ritual I look forward to, especially during the holiday season when I need that extra perk to get me through my days! Today for coffee time, I thought I'd share a few of my favorite quotes, or "Jolts-of-Java," as I refer to them here @ CHRONICLYsILLy! To offer you all an afternoon pick-me-up, just as my coffee offers me my afternoon pick-me-up each and every day!

"The fact is, that to do anything in the world worth doing, we must not stand back shivering and thinking of the cold and danger, but jump in, exert your talents, and distinguish yourself, and don't think of retiring from the world, until the world will be sorry that you retire..." -an adaption from Robert Cushing & Samuel Johnson

"Never doubt that a small group of committed people can change the world, indeed, it is the only thng that ever has..." -Author Unknown

"90% of a coping with a Chronic Illness is mental, the other half is physical"-Yogi Berra

"Flatter me, I may not believe you, Criticize me, I may not agree with you, Ignore me, and I may not rely on you, Encourage me, and I will not forget you." - Author Unknown

Hope you all have a lovely afternoon- ( I always forget that it may be morning, or evening in your neck of the woods depending on where you live- so forgive my time references throughout my posts!- just a side note I thought about as I typed "afternoon" LOL) - and enjoy the remainder of your day!

Think Happy, Be Happy!

2012-12-05T10:30:00.002-05:00

Think Happy, Be Happy! Is it really as simple as that? I am a firm believer that changing the way you think about a situation can alter your actual mood and feelings towards that situation itself. Your thoughts become your actions...Your mental state can greatly impact how you genuinely feel and your overall well being! So give it a try today, and Think Happy, Be Happy! And to keep it short, simple and sweet for this morning- I am off for some coffee and perhaps a little rest before I get back to it this afternoon!

How the Grinch Cured Lupus!

2012-12-04T21:56:00.000-05:00

In honor of the holiday, I'd like to share with all of you an old post from when I first began blogging over the summer of 2010, and now is the perfect time of year to share! Most of you are probably quite familiar with Dr. Seuss', "How the Grinch Stole Christmas," as it is a staple come the holiday season, and if everyone remembers correctly, at the end of the book/movie, the Grinch's heart fills with love..."and what happened then? Well, in Whoville the say that the Grinch's heart grew three sizes that day!"But whatever happened to the Grinch (once his "reign of terror" and obsessive and almost compulsive hate for Christmas and Whoville came to and end of course...)Well, the Grinch went on and dedicated his life's work to studying and researching Lupus (what a stand-up guy!) And this... this is How the Grinch Cured Lupus:

Every Lupie down in Lupieville disliked Lupus alot, so the Grinch decided to cure it on the spot! He hated Lupus, and everything that went along with it, so he decided to work on a cure that would fix it!

As the Grinch worked hard, every day and each night, the Lupies raised awareness and fought a hard fight...To find a cure was the Grinch's ultimate goal, but the lack of sleep was starting to take its' toll...

Because the Grinch himself has Lupus you see, and his body was aching from his head to his knees...But he kept up his work, yes he researched some more, but his joints and his body grew more and more sore!

The Lupies heard of the Grinch's dismay, and they joined together and started to say, "One for all, and all for one! We'll help the Grinch 'till his work is done!" He's worked so hard through the aches and the pains, and now you see, he must walk with a cane...So we'll band together through the ups and the downs, as we spread awareness throughout the whole town!

The Grinch was so touched by all the help he received, that his Lupus symptoms had began to leave...He was determined to find a cure, now more than ever....and then it hit him, an idea that wasquite clever!

So he went straight to work, but with moderation and care, with hopes that he could prevent another Lupie flare, and with his Lupieville friends fighting by his side, he stood up tall with courage and pride, and announced to the Lupies that a cure had been found! Then the crowd went silent, there was not a sound...The Lupies in Lupieville stood there in shock, then towards the Grinch, the giant crowd flocked, and they shouted and hollered and hooted some more, because the Grinch, you see, had found a cure!

And that is the untold story of, "How the Grinch Cured Lupus!" Now if only we could cure Lupus in our World as well (not just in Lupieville!) Have a wonderful holiday and here is a toast to A happy and healthy new years to all! May you be blessed in the year to come!

Be Amazing!

2012-12-04T21:48:00.004-05:00

I truly love this quote! Maya Angelou has always inspired me to keep on going- and this quote truly explains how I feel about it! I hope you all enjoy this one as much as I do- and may it offer you peace and act as an inspiration for you to achieve your goals and realize that no goal- no matter how unattainable it may seem at times, is out of reach. Have a wonderful night my loves and I will see you all in the morning, for some blogging over breakfast! Something I have not done in far too long and truly miss! Sweet dreams and slumbers from my cozy bed! Goodnight!

Re-Vamp of CHRONICLYsILLy!

2012-12-04T16:21:00.001-05:00

Good Afternoon loves! I have just (with some assistance from my fantastic brother) re-vamped the blog/website! I hope you all find the new layout appealing, colorful, upbeat and cheerful as well as easy to navigate and use! It was definitely time for an update! I would also like to inform you all that I plan to be posting more often once again on my site! As many of you know, I post daily, multiple times on our Facebook page (the link can be found on this site, in numerous places!) each day, but have neglected my site here and my blogging a bit- due to, well the usual, chronic illness nonsense and that little thing called life that sometimes gets in the way! But I look forward to kicking off the remainder of 2012, and the new year, 2013 off right and getting the page back on track! Even if it is just little whimsical bursts of humor, positivity and inspiration. I will do my best to post more frequently and share the love with all of you!

Thank you all for your continual support and helping the site grow and creating a community of positivity for us all to share and take part in! I could not keep going each and every day without the support and love I receive from each and every one of you, and I sincerely and genuinely want to thank you for all that you do! I hope this finds you all well and that you are feeling well and are all doing well as we are well into our 2012 Holiday Season! 'Tis the season for flus and colds so be sure to keep healthy, eat right and get plenty of rest!

Dear Lupus, Sincerely Me

2012-10-16T16:55:00.003-04:00

Good Evening Loves! I am posting as I miss posting here and decided to have some fun after long morning at the Docs (an impromptu visit for a sinus infection that is sending my Lupus into a crazy flare, and my immune system is going haywire!) I have a very uplifting and what I think is a fun way to poke fun and add some sarcastic humor to our chronic illnesses! It's based off a new site my younger brother introduced me to and I think it's a riot... it goes by the name "dear blank please blank..." and I am going to improv a bit and fill in the "blanks" literally, with regards to our daily lives, chronic illnesses and much more! I encourage you all to try it and leave a comment posting your own Chronic illness Dear blank please blank!- So without further Adieu, here I go! (My lupus swagger is raging as we speak, so this should be a good time!)

Dear Blank Please Blank

Dear Platelets,

That party last night was wild! How low can you go!?

Sincerely, The other blood cells

Dear Prescription pill bottles,

There's not enough room on this night stand for both of us...Literally

Sincerely, The lamp

Dear Lupus,

Please feel free to cut the crap any time in the near future, it would be greatly appreciated.

Sincerely,

Yours Truly and My Body

Dear Immune System,

When you decide to grow up and stop "over-reacting" like the drama queen you are, we can be on speaking terms again.

Sincerely,

The tissue and organs your attacking

Dear Christmas Cookies and holiday treats,

Good Luck surviving this holiday season- HA!

Sincerely, Prednisone

Dear Reynauds,

You are my B*tch! No tough feelings though?

Sincerely, Temperatures below 60 degrees

Dear Sciatica,

Your a real pain in the arse!

Sincerely, My arse!

Dear People who walk up the escalators,

The escalator moves for you- hence why I take it.

If you wanted to walk- you should have taken the stairs...

Sincerely, I'm not moving out of your way

Dear Joint Pain,

Good Luck Holiday Shopping now.

Sincerely, C-Reactive protein

Dear Gangstas,

Some of us walk that way because we're in pain, not because we think it looks "gangsta"

Sincerely, I promise it doesn't look as cool as you think

Dear Extreme Fatigue,

Jokes on You.

Sincerely, Insomnia

Dear Diets,

HA HA HA HA HA!

Sincerely, Prednisone cravings

And these are just few of the many that pop into my head as I sit here in my big comfy chair, laughing to myself as three more just popped into my head! I encourage you to try, it certainly put a smile on my face today as the idea for this post came to me out of nowhere! And Share yours too, leave your post under comments so others can enjoy them and hopefully get a good laugh too!

Jolt-of-Java: "Humor is mankind's greatest blessing" Mark Twain

Green Monster Smoothie kick start October and your Morning Off Right!

2012-10-02T12:41:00.003-04:00

Good Afternoon loves! Posting today to share what I have been endulging in for breakfast the past few mornings! The GREEN MONSTER SMOOTHIE! It is packed with nutrients, loaded with flavor and hits that sweet tooth! Not to mention it's great for you and keeps you fueled for hours after! So, without further adieu, I will share the secret ingredients to this green masterpiece of healthfulness! It is so important what we put into our bodies, and since I have been eating healthy (slowly transitioning over the past few years, and once I developed a Gluten Intolerance I really started eating a very clean diet- loaded with fruits, veggies, and proteins (lean ones)-I noticed a huge improvement, slowly but surely, in my overall being.

Green Monster Smoothie!

1 Medium Green Apple (skin on preferably- it is where a lot of nutrients and fiber is found!)

1/2 cup-1 cup plain or vanilla Greek style yogurt (packed with protein! almost 2x as much as regular yogurt!)

1-2 cups Spinach

1/2 cup pinapple or mango or both! (optional)

Splash of Orange juice, almond milk, regular milk, etc. what ever you prefer, it just needs a little liquid to get it moving in the blender!

Through all ingredients in a blender with a few ice cubes and in about a minute of grinding and blending you have a delish smoothie to start off your day!

If you have any questions feel free to post a comment on this post or contact me on the facebook page which you can find in numerous areas of this blog!

Have a great and healthy day loves!

This just in! Cookie Monster on Prednisone Burst Therapy!

2012-10-01T10:02:00.000-04:00

Ever wonder why Cookie Monster eats his cookies so violently?! Why his finger tips are always blue? (Must be the Reynauds!-I know this one is a stretch but let's roll with it for the purpose of some good ole' fun in this post!) Why he seems a bit hyper and full of energy at times and crashes at others? You guessed it folks! He's on Prednisone! The love-hate, gimme more I want to get it off now, magic pill we all love to hate and hate to love! After all these years it finally makes sense!

I know I have not posted in a while, I plan on getting back to things a bit more- I do keep up with the facebook page for those of follow me there, I post daily, numerous times a day and it's a great page so come on by and feel free to dicuss, share and just hang out on it! Also if you need or would like to share something that is the best way to get in touch with me as well (I love the new "message" feature for the pages on Facebook!) So with that said, I am off to have some coffee and attempt to get out of bed after staying up far past my bedtime (not that I have anywhere to be-LOL) last night for the Giants vs. Eagles game only to watch My Men in Blue fall to the Eagles by 2 points in the 4th quarter. A devastating loss is not making this Monday any brighter but hey, maybe some Java will do the trick! I am thinking a GREEN MONSTER Smoothie for breakfast should get some inflammation down as well! Have a wonderful Monday and Happy October!

Lupus From A Parent's Perspective

2012-04-10T16:49:00.001-04:00

Lupus from a Parent’s/Caretaker’s perspective: How to manage and Cope when you have a child that is Chronically Ill

Usually, for my column, “The Lupie Life,” I write about my own personal experiences living with Lupus, and how I manage my illness on a day-to-day basis… But what most people do not realize is that Lupus and any chronic illness for that matter, affects more than just the person who is diagnosed. While my parents and I have always been very open with regards to my Lupus, I have never been quite sure just how they manage being a “caretaker” and was curious as to what Lupus is like and looks like to someone who loves and cares for someone’s who is chronically ill, especially their child. My parents have always supported me, loved me unconditionally, and have given me every possible opportunity to reach my full potential...So I was intrigued to sit down with them (my “Momma-dukes” & “Poppa Bear”) and find out just how they coped with my initial diagnosis, how it impacted their day-to-day lives, and how they have learned to cope and manage being the caretaker for their child, when it seems as if it should be the other way around (the child taking care of the parents…).

Q: What was your initial reaction to my diagnosis in June 2009?

A: (Father) There was definitely a bit of shock, initially, which was followed up by a little relief because we had been dealing with it (these random symptoms) for over 3 years trying to figure out WHAT you had… Now we knew what it was, it has a label and name...But once the initial relief of finally having an answer dissipates, the reality of the situation and its’ potential severity and ramifications hit you.

Q: Did you know or had you heard of Lupus prior to my diagnosis?

A: (Mother/Father) Yes I had heard of it vaguely, and I (father) knew someone who had it through a friend (at a distance), but had never realized all it entailed, because I had not been touched personally by it, until your diagnosis.

Q: What did you do to educate yourself about Lupus?

A; (Father) “The Internet, thank god for the Internet!” The Internet is such a new resource for my generation and what a tremendous aid it was to help us understand and find out more about Lupus and what it entails. We also attended a seminar at NYU to learn more and hear what others who were living with the disease were able to manage and deal with their highly unique and individual case of Lupus, as no two cases are alike.

Q: What was your biggest concern/fear upon finding out and researching about Lupus?

A: (father) Your future and the unknowns that come with an illness as illusive and mysterious as Lupus… Also, I (mother) recall your rheumatologist saying that he was going to give you some medication to help better your quality of life, and those words have stayed with me since that day, because it was not until your Lupus started to flare and you were dealing with some more serious complications of it that I realized what he meant by “quality of life.”

Q: What is it like to care and be considered a “caretaker” for your child?

A: (father) It’s someone I love so it wouldn’t matter if they were older, younger a parent, child, sibling, wife, etc. You take care of the ones you love, I don’t consider it being a care taker, It’s more of being a parent, and loving your child unconditionally and wanting what’s best for them.

Q: How, as a caretaker and parent of a daughter who is chronically ill, does Lupus affect your daily life, activities etc.?

A: (father) It makes you manage your time better… You learn to work around appointments, reschedule your work schedule and you learn how to prioritize, health comes first, always. (mother) Everything I do and every decision I make on a daily basis is made around what I need to do for you and what your needs are that day as they are ever changing, one of the many aspects of Lupus that make it such a hard disease to cope with.

Q: What strategies/how have you learned to manage and cope with Lupus that you would like to share with other parents and caretakers?

A: (father) Patience, and trying to make your life more comfortable and get the best care possible for you now and down the road… I also recommend becoming friends with your local pharmacist (it will pay off!), and learn to take it one day at a time, while trying to keep a positive attitude.

Q: Has there been one moment you recall or has stuck with you, personally, with regards to dealing with Lupus from a mother/father’s perspective?

A: (Mother)- When I had to watch the lady at the wig shop shave your hair, or what was left of it, when you lost it due to a bad flare this past September, it hit me very hard.

(Father)-When Your platelets dropped and I had to come to school to get you and bring you to the hematologist, I had seen the picture of it the morning before but was not prepared to see what it looked like and the severity of it in person, I also was unaware that a low platelet count could cause spontaneous bleeding and that lupus could cause a low platelet count.

Q: You both take/sit in on many of my appointments with both the Rheumatologist, and numerous other specialists… What has this offered you as far as gaining a better understanding about Lupus, and its’ treatments?

A: (Father) It brings more confusion, frustration and a lot of other emotions that you learn kind of come along with this “lupus” territory, but I find that it gives me better input into what kind of medical care exists for lupus patients, and as far as treatment is concerned it is difficult to see your child in pain and have trial and error treatments fail, time and time again, and doctors uncertain as to how to help. It’s hard to understand why they cannot help more, but you have to keep in mind that you are bias, because it is your child who is sick.

Q: What is your opinion on Lupus awareness and advocacy, and what is being done as far as Lupus-specific research?

A: (Father) I don’t think there’s enough advocacy and research whatsoever…It’s hard because it seems that there are these “diseases de jour” that celebrities back and donate to that become “trendy,” and lupus is not one of those glamorous diseases, and because of this it seems to take a back burner. I’d like to see more advocacy and awareness for it, and a better future and quality of life for those living with lupus and their families.

Q: Do you find other people have a hard time understanding what it is like to be a caretaker for someone who is chronically ill/Do you feel as if they do not fully comprehend what it entails?

A: (Father/Mother) Yes, but I think because people do not fully understand lupus, they cannot possibly understand how and what it truly entails, and they do not understand how its’ severity and intensity vary so greatly in each and every person. It’s especially difficult when people downplay the disease, and think it’s “not so bad,” because like any disease, some people have mild forms of it, some moderate and others severe, and I think it’s important the general public gains a better understanding as to how disabling Lupus can truly be.

Q: How has your perspective on life changed or been altered because of Lupus/how is your life different now than it was before I was diagnosed?

A: (Father/Mother) The focus has changed from us as a whole more to you and your health, both short term and daily, to long term, care and our game plan for the future (Which can be difficult because there are so many unknowns)….Also, we do not take things for granted and have learned to value health, and that anyone with a healthy child should know how truly blessed they are.

Q; what do you see(or want to see) for the future of Lupus/advocacy and research:

A: (Father) I would like to see it brought to the forefront, to be on the same level as breast cancer or Lance Armstrong’s live strong campaign, and to bring not only more funding for research to find better and more specific treatments, but also, to make it more well known to the general public. I hope that there is more done in the future, so that Lupus patients can be offered a better quality of life.

Reflecting on the interview: I took a lot away from this interview. I have always had a great relationship with my family and my parents, and they have been nothing but supportive since my diagnosis. However, I had never actually sat down and had a heart to heart, if you will, about such personal issues and feelings with regards to Lupus, and how it impacts them on an every day basis. Usually when we sit down to have a “serious lupus talk” it is regarding an upcoming appointment or what our next move is in forming a game plan to get me the best care possible.

Initially, upon sitting down and preparing my interview questions, I was hoping to offer others that are caretakers and parents of those who are chronically ill, a resource to help them relate and possibly offer them some coping strategies and ways they can further and better support and understand their loved one(s) who are battling this debilitating disease day in and day out… But I think I have taken more away from our little Lupus Pow-wow, as I gained such a deeper understanding of what being a care taker truly entails and to hear them speak of their fears, concerns and opinions on Lupus, and how it affects their daily lives, and ultimately, what lupus looks like from the eyes of a caretaker/parent.

A Spoonie for Awareness!

2012-04-10T16:45:00.000-04:00

From a fantastic #spoonie who is raising awareness for #lupus! Please check out her awesome youtube channel! It is totally worth it she documents her daily journey with lupus! It is a great resource for anyone and everyone with a chronic illness!

" Hi Everyone! I hope you all are having a beautiful, pain-free day :) My name is Steph, and I am 23 years old. I was diagnosed with Lupus, Christmas of last year, after years of suffering and being undiagnosed. I began filming videos shortly before my diagnosis, regarding Lupus awareness and I have really expanded over the last little while. I have begun filming life video's.. as I would have loved to have somewhere to turn before I was diagnosed. I am newly engaged, planning my wedding, trying to get my bachelor's in psychology and all the while, trying to plan a future family with my fiance of 5 years. I hope you can all come and join me on this journey! Let me know what you think, and if you have any video requests! Have a wonderful day my beautiful lupies ♥"
www.youtube.com/stephhopelupus

A giggle or three!

2012-01-14T12:59:00.003-05:00

Just for fun!

Everyday I post, sometimes numerous times to my facebook page for CHRONICLYsILLy and to my Twitter account, but find I do neglect my Blog from time to time especially when school picks up for me and I am in session... So today on my lazy Saturday I feel the need to share some of the Silliness that has been spread via the Facebook/Twitter pages the last few weeks! Just to highlight a few of the giggles:

Some Maxine's greatest moments always gets a good giggle out of me!

Snoopy: My favorite- Love this little sketch hehe

Don't Cheat and just turn your phone! You smart folks that did that when I posted this to the Facebook page LOL I want to see everyone looking ridiculous trying to read this! LOL

Homemade Veggie Soup and Cucumber Tomato Salad- A healthy start to a new year!

2012-01-11T17:12:00.004-05:00

A healthy start to a new year!

Now granted, I generally eat rather healthy and mostly whole foods to begin with, as I try to do as much as I can to keep myself as "healthy" as possible to sort of counteract all the things I have working against me healthwise...I am also gluten free due to an intolerance which helps eat a bit healthier and more wholesome foods as, generally speaking, they are cheaper than a lot of the specialty gluten free foods such as the GF cookies, crackers etc. I opt for an apple with some homemade trail mix (nuts and dried fruits all tossed in a bag and BAM! trail mix du jour!) instead! Much cheaper and tastier in my opinion!

So today, I have decided to share what I usually have for my daily lunch with some veggies (carrots, broccoli, celery etc) and hummus! It is hearty, wholesome, and quite filling and healthy all in one bowl- Literally! So... here it goes, here is the recipe for anyone interested and it can modified a million and one ways!

KP's Wholesome, Hearty and Healthy-licious Veggie Soup!

Ingredients: (as much as you'd prefer of each!)

carrots-chopped

celery-chopped

Onion-diced

corn-usually I use canned or frozen

potato/sweet potato-cubed- this helps act as a thickener/the sweet potato adds some nutritional value and vitamins if you opt for it!

cabbage- I usually use the pre-shredded that comes ready to use for cold slaw (it's a spoon saver)

Chicken broth- usually I make a quart or 2 at a time of the soup so I use a quart of broth, usually low sodium to watch the salt, also you can dilute it with water

tomatoes-diced-optional (I use them about half the time- when I'm feeling a little wild haha)

Season to taste (salt, pepper, I usually spice it up I like a little heat so I toss in a tablespoon of cayenne pepper, bayou cajan seasoning, a pinch of garlic powder, onion powder, and sometimes, a touch of lipton's french onion soup mix - I also use this when I do not have broth in the house- mixed with water it serves the same purpose!)

To make: Put all ingredients into large pot, over medium heat and bring to a boil...Then reduce heat to low and cover- let simmer for about one hour! Then... ENJOY! The longer you let it simmer the more cooked and thick the soup becomes!

Cucumber Tomato Salad Recipe:

I like to serve it with hummus and veggies on the side or sometimes, like tonight- with a cucumber tomato salad!

Ingredients:

(equal amounts of:)

Cucumbers-diced

Tomatoes-diced

onion-diced

about 1-2 tablespoons of olive oil

about 2-3 tablespoons of vinegar (white or apple cider work best)

fresh garlic minced or garlic powder to season

salt & pepper

Combine all ingredients in large mixing bowl- mix and bam! You have a delish side salad! If you make it ahead of time and let it sit the flavors really develop!

So the next time you need some new recipe ideas and are trying to keep it healthy- give it a try- If you do- please share your thoughts, how you made it your own and pictures too if you'd like! I'd love to see how you made it and what you thought too! Happy New Year and good eats to you all!

Benlysta- Infusion #3

2011-12-06T09:45:00.002-05:00

Benlsyta infusion #3

Yesterday marked my third infusion of Benlysta, the last of the loading doses (3 in the first month), and now I will receive them every month, which seems much more doable! I must say you get used to them rather quickly, aside from the day after hang-over effect that consists of a headache and some aches and pains and the usual fatigue (which could just be the Lupus too... hard to decipher...) the infusions thus far are going well. I am not sure I am feeling much of a difference yet, but the doctor and infusion nurse (whose a doll), say to give it time and gradually, hopefully, there is a gradual improvement. They monitor these slight changes with the pre-infusion paperwork that consists of a questionnaire, that goes through all of your extremities and joints asking how you are feeling, how the pain is in each, and how you believe your condition(s) are affecting your everyday ability to function/quality of life. By doing so they may notice slight improvements that you may not right away. Like many therapies and drugs used for Lupus, it is a waiting game, generally speaking, and could take a few months before seeing improvements, however some may find relief sooner, as each and every one of us will respond slightly to massively different (As with any medication), to each their own.

After an hour and half (approx.) the infusion was complete, I was drowsy from being up early and the pre-infusion Benadryl, and was ready to call it quits for the day, but had some running around to do with my pops, so we powered through and then to the cardiologist's office as it was the day of docs yesterday, and I was so happy when it came to an end and I was in my bed relaxing for the evening!

My Journey with Benlysta- Infusion #2

2011-11-22T13:04:00.003-05:00

Infusion #2- My Journey with Benlysta!

Good Afternoon to you all, and I hope you are all preparing for a happy and healthy (I use the term loosely, but nonetheless...) Thanksgiving coming this week! My Turkey Day week started off with my second infusion of Benlysta, the 2nd of the first 3 that are given in the first month as the loading dose, to jump start the process! After that it will be given once, monthly- now I am no fan of infusions but for the timing being it certainly beats adding another pill into the already ridiculous routine ( at last count it was 32 pills a day- ABSURD and working to get that number way down -beginning with getting off the dreaded and yet beloved- PREDNISONE!)

The infusion, however is made so much more pleasant due to the lovely nurse Debbie, whose bedside manner is immaculate, and who truly makes you relaxed and comfy for the entire process ( I mean the Pre-infusion Benadryls help take the edge off too- LOL)! Things went smooth with the infusion, and I was a bit concerned as to whether or not I would be able to get my second infusion as scheduled due to a recent stay at CLUB H (the trendy Hospital in town). It's all the rage this fall season and has all the latest trends from the hole-y hospital gowns that apparently are only made on triple XLs, to the latest in food (on the all liquid diet- it was all the rage in hollywood too last year!), from yogurts to soup broths what more could a gal want! But my colitis is calming down, I am on the mend and we were able to get the go-ahead from my Rheumatologist to move forward with the infusion!

Once I was hooked up to my mock-tail (medical cocktail), it took about an hour from start to finish, and I was out the door and on my way home to sleep off the Benadryl (it always makes me a little more Loopy than usual!) And aside from the day after mini-hangover feeling and headache I have had minimal side effects from the Benlysta and am very happy with how I have tolerated it thus far. My next infusion, the last of my loading dose is schedule for December 5th, 2011. Wish me Luck and have a fantastically silly Thanksgiving full of spoons!

Infusion Number One- My Journey on Benlysta

2011-11-08T12:04:00.003-05:00

Yesterday, Monday November 8th, 2011, was my first infusion with the newly FDA approved Lupus Drug, Benlysta. (For more information on Benlsyta click here!) I have been in the process of starting it for about two months now between the insurance authorizations, pre-approvals, consultations and then finding days to schedule infusions around my graduate courses and my poppa bear's schedule as well (Yes he was the DD- Designated Infusion Driver) for the first session, as it is typical that they give you both Benadryl and Tylenol prior to your infusion to minimize any allergic effects from the biologic agents being infused into your body. The Benadryl hit me rather quickly and I found myself feeling a tad Loopy before we even began the infusion! However, it also relaxed me a bit and calmed those pre-infusion nerves I had shaking me from the inside out from the nights leading up to the day of the infusion. It's not that I was scared, or fearful, but more anxious to start a new chapter in my Lupus Journey that thus far, has been such a roller coaster of ups and downs and loops,swoops and pulls and turns in every which way, like something out of a Dr. Seuss Story, as I am sure many of you can relate with your own journeys with your chronic illnesses, regardless of what they are.

We arrived and I had already filled out the necessary paper work prior to arrival to keep things moving right along (and no worries I was equip with a Vitamin water and XL Iced Coffee from 711) along with a bag of peanuts (thank you pops), and some very comfy clothes as I was not sure how I would feel afterwards, and had plans that consisted only of coming home and resting/sleeping off the Benadryl. I was taken back after what seemed like 3 hours of waiting in the waiting room (where they had an entertaining bit on the "Rhuematology Network" about celebs with Lupus), to the infusion room which had three lovely ladies that were already hooked up to their mocktails of choice for the afternoon. Grease was playing on the TV, and nurse Debbie was ready to get me going. As you all know the worst of the worst is simply putting the IV in, once that is done it is smooth sailing (generally speaking), and other than some minor side effects (headache, rapid heart rate and some wooziness), and another half of an old school movie (Superman this time, because naturally after Grease we needed something a bit more up-to -date?)

Before I knew it my coffee was gone (I needed more than an XL apparently because it was doing nothing to combat the sleepiness from Benadryl), My infusion was coming to an end, my pops was brought back to the infusion room and I was escorted home to my very comfy and very oversized Big Chair (see: Ode to the Big Chair post from Summer 2010, followed Ode to the TV Pillow for Costochondritis), where I planted myself for the remainder of the evening.

My next infusion (as we are doing the loading dose) will be in another 2 weeks, Monday November 21st, 2011, which will be followed by my last loading dose (3 in the first month), on December 5th, 2011. From that point on I will receive my infusions once monthly, and hopefully within 4 to 6 months start to really take note to the improvements that I am hoping Benlysta offers me (Fingers crossed if all goes according to "plan!")

My Journey On Benlysta-The Journey Begins Shortly

2011-10-25T17:16:00.003-04:00

Benlysta: The Journey Begins Shortly

Hi everyone,

I have not written much about myself in quite sometime as I try to keep the page light-hearted and positive and shining away from my more personal matters and health issues, however this one seems a bit too relevant that even I could not ignore nor stop myself from sharing it with you. I have kept it relatively hush hush until now, but have just scheduled my first Benlysta Infusion for November 7th, 2011.

I would like to track my journey with Benlysta here with you all to monitor my progress, how each infusion goes, and hopefully the improvements I begin to notice after a few months of treatment have gone by. They say it can take anywhere between (generally speaking) 4 to 6 months to feel an improvement, however they monitor your symptoms and how you are feeling on an evaluation form prior to each infusion session to find more subtle changes and track long term progress, and I decided to do the same here, and share my journey with all of you. It seems this new drug shines hope into many of us, I am keeping my fingers crossed it works well for myself as well, as it is always important to recognize that while Benlysta is not a cure for Lupus, it is an AMAZING step in the right direction for Lupus treatment and eventually and hopefully a cure in the future, and one that I am excited, anxious and nervous to begin taking. I look forward to sharing my journey with all of you, and hope you will benefit and find hope within my own course of treatment (fingers crossed it works well and we get some much needed results/relief from Lupus and all of its Lovely complications! -can you sense my sarcasm? Good.)

For more information with regards to Benlysta Click here!

Best of wishes and warmest regards,

Yours Truly

Vampire Lips and Jack-O-Lantern Apple Treats!

2011-10-12T09:18:00.004-04:00

Vampire Lips Apple Treats:

It's that time of Year again when the holidays come rolling around and I always like to show how healthy foods can be fun for your little ones this time of year! So take those fruits,veggies and get creative! add some peanut butter, nuts, raisins, etc and anything else you can think of to give your kids a healthy and fun snack through the holiday season! We kick off today with our Vampire Lips Apple Treats! These are simple to make and a great after school snack for your little ones, or to pack in their lunch pales to take on the go! Simply cut the top and bottom off an apple (red or green is your preference!). Then Pick almonds or almond slivers, peanuts can be used too if you prefer and set about 5 to 10 aside. Then Take a pearing knife (this should be done by adults only!) and cut a wedge out of the apple so you form the "lips" of your apple vampire lips! Now it's time for the teeth! Grab those almonds and with the pointed side, insert them gently into the apple on both sides of the lips! Make them crooked for some added halloween flare and have a blast! You can add a side of peanutbutter for dipping with this delicious treat or a little cup of caramel for those of you with a sweet tooth!

Jack-O-Lantern Apples!

These simple and delicious treats are sure to put a smile on your face and make your simple apple a much more fun treat this holiday season! Again pick an apple red or green (your preference!), and a pearing knife and carefully carve a little face into your pumpkin! Get as creative as you'd like and watch those fingers! It is much more simple than it appears at first! Not a fan of using knife! No worries! An alternative way to create a pumpkin faced apple is to take two dabs of peanut butter, and place where the eyes should be, than take 2 raisins and put them in the center of peanutbutter circles. next take peanutbutter and use it again as your glue where the mouth will be and take a handful of candy corn, cut off the tips and use them as the teeth for your pumpkin's mouth! :D A sweet addition to your healthy treat! And who doesn't love some candy corn to turn your healthy treat a little sweeter without downing a WHOLE bag of candy corn! A great way to have your cake and eat it too or in this case your sweets in moderation! I Hope you enjoy these friendly apple treats and have fun coming up with your own healthy halloween treats, tricks and snacks!