Entyvio · Health · Motivation · Sparkle · Ulcerative Colitis · Xeljanz

5 Years and Counting (I Wish Not)

Chances are, if your reading this, you know I started this blog as a place to talk about my journey with ulcerative colitis & other autoimmune diseases. I try to go along my journey with grace & humor, hence my name SparkleWithUC. There are, however, days that make you reflect on your journey & revisit the good, the bad & the downright ugly times that brought you to today.

This is me & Mr. Wonderful a few months before life changed for what I hope is a very limited amount of time. I hold out a unicorn believers type hope that there will be a complete cure & not just a bandaid for ulcerative colitis while I’m still alive, not that I have plans to go anywhere until I’m atleast 105.

This was Christmas 2011. No hint of disease….yet. 155lbs

Less than 6 months later, May 2012. I have been treated for hpylori with 2 massive doses of antibiotics & have been diagnosed with severe ulcerative colitis. 108lbs

I had to cut my hair because it was so thin & unhealthy. I would do this several times throughout the last 5 years just trying to look a little healthier than I actually was.

Prednisone puffy! The chipmunk cheeks became a cycle. I would complete a round of prednisone & flagyl with mild success. About the time the chubbo cheeks would disappear, I would be in another flair & need more prednisone.

More prednisone puff in 2013. I acted a lot like the bear snoozing between our heads in this picture. I was moody & no one dared wake me up without fear of “poking the bear”. I was in denial that there was a better treatment out there & would not ask my dr for help.

Fast forward through ups & downs & flairs & calm to 2015. Around the time of Cool Hand Luke’s 1st birthday, I was in such a bad flair that Chad pretty much dragged me to the dr. Thank God he did because I started on Entivyo 2 months later. Miracles do happen!

I look healthier & have energy! My hair is growing & I can see the division between new hair & the old stuff. My kids get more mommy time! There’s just too many positive changes to note them all!

I look like my 1st picture, except older, I mean, more distinguished. I know we grow older & we change but it’s so fabulous to change & age with time instead of prematurely because of illness & stress.

There’s always lessons to be learned from the experiences God allows us to get through or pushes us through. I want to encourage you to deal with whatever “it” is because it’s not going away. If you are facing health decisions that need to be made, don’t sit back & let dr’s dictate your future. I cruised along with my head in the sand for several years thinking that I had to do what the dr said or my earth would shake & life would be over. I felt that I was the best I was going to be despite what I showed you in the pictures above, I was obviously not healthy. I had a few people around me who could see through the front I put up. They pulled me out of my comfort zone, to ask for better treatment & I am forever greatful for showing me patience & grace.


My seester!

My sister is one of those pushers. She has crohn’s disease & has had major surgery losing close to a foot of intestines. Who better for God to knock me upside the head with but my lifetime confidant & best friend. He knew I wouldn’t listen to someone who hadn’t been through the ringer herself.

By the way, did you know that God didn’t care for my opinion on the matter & he stacked the odds in my favor despite my stubbornness, as evidenced by my continued breathing. I want to always think that I have the control at my fingertips because I am a control freak, ask Mr. Wonderful, but there are times that I reflect on my journey & realize I was never in control & he has given me plenty of life’s lessons to prove it.

So, on this, my 5th anniversary, I am oh so thankful for more than I deserve in the blessings department. One such blessing is that I have learned more about natural health in 5 years than I learned the first 29 years of my life.

Also, my hair is growing back. Note to self (& you), never take hair for granted again!!!
Oh, & despite my 1st dr telling me that we should just take my colon out at age 29 with only 2 short months of unsuccessful treatment, I have every last inch of my intestines because I’m stubborn & fought to keep them.

So to you, the fighter, keep fighting & in the words of Dory, “just keep swimming.” You can do it!!!

Entyvio · Health · Sparkle · Ulcerative Colitis · Xeljanz

#12

After 3 weeks of waiting on my insurance company to complete some stupid new pre-authorization for a medicine that I have been on for a year & a half (grrrrrrr), my infusion day has arrived!

I know there’s red tape everywhere but why does insurance have to cause delays that affect my gut? Shouldn’t they be proactive about new preauthorizations instead of reactive, especially when they changed the paperwork & not my doctor? Just my thoughts as I sit here hoping that my daily fevers will go away & that Entivyo works it’s usual magic in my gut.


As I sit here in Texas Oncology listening to the conversations going on around me I have decided that I am selfish.
I hear one little boy is asking his grandpa for cartoons on tv instead of the morning news.
An older lady is telling her adult daughter, who’s leg is bouncing up & down with nervousness, that it’s just one stick & then it will be ok.
The couple behind me is talking about what the next step is because the chemo treatments may not be working.
I feel down right selfish right now. I was so upset that my infusion was 3 weeks late which, in the world of bilogic medicine, means that my body can begin to produce antibodies to the medicine & it may stop working. I feel selfish because there are so many people that I see in this room who are just hanging onto life, hoping that their chemo will keep them alive to see another day.
Sometimes, somedays God gives us small reminders that there’s more to life than anything we’ve got going on. Then some days he gives us emotional, heartbreaking pushes to change our hearts & minds. Today was a heartbreaking reminder to care about others & stop thinking of myself.
My gut vs someone’s life are by no means an equal comparison so I prayed for a cure for cancer (long shot, I know, but God is a big and mighty God) & that all those in the room would feel God’s peace wherever they’re at in their fight for life.

I still don’t like the needles & getting stuck several times for one successful IV is not my idea of a good time but Entivyo has been the miracle my colon so desperately needed. In June I will hit the 5 year mark since my diagnosis. Remembering the first three & a half years of prednisone driven life with several unsuccessful medications makes me beyond thankful for the last year & a half of Entivyo bliss!

 Some days your the inspiration & some days, you’re the inspired! Either way, you can change the world!

Entyvio · Exercise · Family · Health · Motivation · Sparkle · Stress Relief · Ulcerative Colitis · Xeljanz

Did you survive?

How did you do? Last weeks workout was pretty intense and not very time conducive to this busy momma. So, it was back to the drawing board for another workout that is more my speed. But first, pull out those tape measures and see if you lost any inches. Yay for you if you did!!!! If you didn’t, keep working!

 

Image result for you didn't put it on in a day, it won't come off in a day

 

Workout courtesy of blogilates.com.

 

Image result for thigh workout challenge

 

Now go squeeze those thighs and lose some inches!!!!!

 

Courtesy of The Workout Princess!

Colitis · Entyvio · Exercise · Family · Health · Motivation · Sparkle · Xeljanz

#11

Today is not so much about Entivyo infusion #11 going in but about the small successes in my health.

My blood dr showed me the various different iron reports that I’ve had since July 2016. I started with a 72 & it has steadily increased since my 2 Injectifer iron infusions last July. My current iron level is 88 which, according to doc, is absolutely perfect!

2 things that number means. 

1. My gut has healed dramatically since Entivyo infusion #1 on my birthday in October 2015. When a colitis patient is flairing, they lose blood, sometimes in small traces & sometimes in large amounts. In my case, it was a combination of trace & large amounts over an extended period of time. 
When I do something, I do it big!!!!! 
Over time the blood cells shrank & my iron production dropped. Once the iron infusions kicked in, the circumference of my blood cells grew increasing my iron levels to the perfect level it is today!

2. Iron makes all the difference in my world. 

* I have energy to play with my boys that I didn’t have at this time last year. 

* I have reached (& exceeded) the amount of weight I needed to put back on after my year long flair. 

* I don’t feel like I need a morning & afternoon nap everyday, just on the weekends & only because I like snoozing with the baby man & not because I’m falling down exhausted. 

*We just finished basketball season & im ready for track without feeling like I need a break. 

*I feel like exercising again & I try to do something active daily. 
I could go on & on about how I have drastically improved but I’ll let pictures do some talking.

January 2016

January 2017

 

My face is fuller! My skin has color to it, without being out in the sun! I see more energy in my eyes or maybe a twinkle of orneriness! I just look (& feel) so much more human!

I didn’t get sick over night. Well, actually, the HPylori that brought out the colitis was fast acting but the disease itself has been ongoing since 2012. To think realistically, it has taken more time to heal than it did to hit the bottom. I remember Chad asking me one day when I was weak & bone skinny if I was dying & he was very serious. Slowly over time, I have healed & this phrase rings true. 

It may not happen as fast as we want but God’s timing is always fabulous! I like to think I can sparkle even in the dark times but God is the one who makes the sparkle shine in the dark.

Colitis · Entyvio · Health · Recipes · Xeljanz

Bacon Mashed Potatoes

I love mashed potatoes! It is a southern staple at the dinner table, especially when your main course is fried! I don’t fry often but when I do, I throw some kind of potatoes with it.

 

So on this particular day, I actually found a recipe in The Quiet Gut cookbook that would get approval from all under my roof. Well, all who actually eat mashed potatoes. The little men have never been mashed potatoe lovers, even when mashed food was all they ate. I know, strange children!

 

I love it when I look through a recipe and can mentally check off every ingredient already in my cabinets. It feels like a small success in this crazy busy world of ours.

 

Ingredients:

  • Milk- I have never liked milk or its smell until I discovered Fairlife. It is milk without lactose and its easy on my gut (small successes once again).
  • Potatoes- I used Idaho because they were in the cabinet but the recipe calls for new or baby potatoes.
  • Butter- I prefer the lactose free sticks.
  • Salt- Sea salt is preferable to plain table salt.
  • Pepper- Freshly ground tastes much better than the ole’ McCormick pepper.
  • Bacon- Any kind of bacon but stay away from breakfast flavors like maple or you might mix up a batch of breakfast mashed potatoes (yuck).

 

 

Now its time to get this show on the road! Start by peeling your potatoes. Cooking can be a family affair so teach your littles to peel as well and you can bond! Sometimes with mashed potatoes I like to live dangerously and leave the skins on, just not for a new recipe.

 

I’m not OCD often but when I am, its to stack my peeled mashed potatoes!

 

Next step, boil your taters. I boil until I remember to take them off but the typical boil, if your pieces are smaller, will take about 15ish minutes.

 

I love this spoon/potatoe masher extraordinaire from Pampered Chef. All in one utensils are the bomb!

 

By the way, I know you wondered what my bacon mashed potatoes will be paired with. Well, chicken of course but only lightly fried, non breaded chicken (because I wasn’t up for the floury mess). It was fabulous and got the thumbs up from the hubs and children.

 

You also need a real veggie so we had boiled squash.

 

 

I haven’t yet mastered the art of baked bacon yet so I cooked my bacon in the microwave for approximately 3 1/2 mins. I personally think Scentsy should come up with breakfast flavors and the best seller would be bacon! Just a thought Scentsy flavor developers!

 

 

After you let your potatoes drain, add the goods…butter, milk, salt and pepper. I love my new Pioneer Woman measuring spoons.

 

 

Lastly, add your mouthwatering bacon. Voila, your ready to serve.

 

 

You may notice that I did not add the scallions list in the recipe. My husband does care for onion flavors so I don’t usually keep these in the house. I think it would definitely add a flavor punch so try them. The potatoes tasted delish even without the scallions so its not a necessity.

 

A change that I would make, now that the seal of approval has been stamped, is to boil garlic cloves with the potatoes. I love my garlic mashed potatoes and it would add a great dimension of flavor to the bacon mashed potatoes.

 

Enjoy your gut friendly taters and share links to your favorite gut friendly taters in the comments.

keep-calm-and-eat-mashed-potatoes

 

Coconut Oil · Colitis · Entyvio · Health · Herbalife · Stress Relief · Xeljanz

Keep Calm & Embrace Change

Gotta Do Something…

Everyone has pesky little problems that pop up now & again. You’d be lying if you said you didn’t. I’m assuming my current problem is coming from my system getting back into balance after five years of just being in overdrive survival mode!

So my current problem is not something I typically encounter because I have Sjögren’s syndrome which is a bi-product of my auto-immune diseases. I know, I hit the jackpot! Not 2 but 3 autoimmune disorders!

Sjögren’s syndrome is a lovely way of saying super duper desert dry! My eyes, my nose, my skin! I’ve just learned over time to deal with it. Restasis for the eyes, body butter for the skin & vaseline for the dry nose.

I asked my dr last month if he has had any patients complaining of dry, dry nose but he pulled up the Entivyo medical page and that is not a known side effect. Leave it to me to be an anomaly! He thinks it’s a combination of Entivyo, Xeljanz and Sjögren’s but I bet a little moisture in this Texas winter air would help a bit.

My hair right now is soooo confused! It’s usually dry so I give it a few sprays of coconut oil a day before I shower & it stays away from being brittle. I used to lather the whole head up with coconut oil until last summer when I got the plumber bill & the cause….coconut oil clog! Watch out ladies, the balanced hair struggle is real!

So, my solution to the oily hair issue has been drawn out. I have changed hair care, no help. I quit coconut oil, no help. I was kinda at a loss for what to do but then the light bulb went off & I decided to try the Herbalife hair care line. It smells amazing!!!! It’s less than I would spend on my favorite Organix shampoo & conditioner & I am already a distributor so why not give it a shot.

I dove in head first & bought the shampoo & conditioner, body wash, bar soap & the lotion, which I already use regularly.


So what have I experienced!

Shampoo & conditioner: Did I mention that my hair smells so fresh & clean…all day long! You know that squeaky noise your hair makes when it’s clean? Well, I can still hear the squeak before bed! My hair is not oily anymore, unless I play with it too much. I think I’ll be able to wash it every other day again! Yay!!!

Body wash & bar soap: My skin doesn’t feel dry after I use the bar soap. My trusty old friend has always been Zest but I get out of the shower & have to immediately slather the lotion on thick to last the day without my skin feeling tight & irritated. I think I’ll be switching to the Herbalife bar soap when I run out of the Zest. The body wash is moisturizing & silky & my skin seems to hold the moisture until I shower the next day. For someone with dry skin, this is the best thing since pumpkin spice creamer!

Hand & body cream: I’ve loved this cream since I laid eyes on it. Have I mentioned how wonderful it smells. It’s not a sticky or oily moisture that you get from the lotion like my usual body butter or coconut oil. It’s just the right amount of moisture for me!

So, I hadn’t planned to sell you anything here but I apparently advertised for the Herbalife Herbal Aloe line anyway. Run to your favorite Herbalifer & get some.

Anyway, the moral of this story is, don’t be afraid to change. Life is a never ending story & you have to adapt with the twists & turns.

The end.

Entyvio · Health · Sparkle · Ulcerative Colitis · Xeljanz

More Great News

I already know I feel better than I did this time 4 months ago because I can move without pain. A coworker of mine who once followed me up the hallway after lunch commented on how I looked when I walked, all hunched over & guarded, in pain all the time. I couldn’t turn my head side to side or make sudden movements. I never thought that I would be pain free again because my body hurt so bad. Never say never, ever!

Today, as I sit in my rheumatologists office, waiting to tell her “I feel amazing!” I am thinking back on how I got her to prescribe me Xeljanz. It took a lot of talking & even some scientific research to get her to agree.

I first saw the Xeljanz commercial when I was watching the local news one morning while getting ready for school. It specifically stated not to take Xeljanz if you have cuts in your colon a.k.a. Ulcerative Colitis. One might think that I would never consider taking a medicine that said such a thing! Never ever say never! I knew that Xeljanz might be an option but I was a little leery with that disclaimer.

A few weeks later I was surfing some of the bloggers I follow & I found a blog entry discussing the findings of a clinical trial testing Xeljanz on Colitis patients. In marches my sparkling curiosity & I thought just maybe this might be it! It may not be a cure but it sure could potentially give me back some type of normal. It seems that the last few years since I was diagnosed with UC just went by in a blur because I was busy trying to make me well again & I feel like I missed some of life.

Maybe, just maybe Xeljanz would give me back some sparkle!

So this is when I decided to look fear in the face & try something new!


So I called my dr & asked, no, I begged her to look into the Xeljanz studies to see if there’s any sliver of a chance that it might work. She was skeptical & I secretly was too but I also knew there was a small chance that it might turn out to be amazing.

I am beyond happy to say that I sure know how to stun my dr. When I told her I have had no symptoms of my RA in the 4 months I’ve been on Xeljanz, she was stunned & my blood work will be back in 2 days to stun her more.


I hate being on medicine but I hate even more when I don’t feel like life-ing, so until there is a cure, my buddies Entivyo & Xeljanz are my new normal!

Christmas · Colitis · Entyvio · Family · Xeljanz

Infusion #10 Going In

I took Enbrel for 5ish years & Humira for 3ish years. (Don’t you just love my accuracy there ?). Well, never in those 8ish years did I ever get over the fact that I had to give myself a shot every week, in my thighs, that were very knotted from years of medicine. I still don’t like needles but I’m all in favor of my 8 week needle! It contains the necter of the Entivyo gods & man-o-man is it some amazing stuff!

Today is infusion #10! I fee like I’ve hit some kind of milestone. I’ve been on E for 419 days, but who’s counting. Last year at this time I was having my last loading dose & wondering if this drug could be my miracle or if it was just another step towards eliminating all my options before I had to have the ultimate option of colon removal. 


I’m beyond happy to report, typically every 8 weeks when I infuse, that I feel amazing! Someone who’s just met me might even think I was normal! Don’t be fooled though, it’s always in the back of my mind & I pray that it stays in the back where it belongs!

This time of year, thankfulness & blessings are on the forefront of our minds. I am beyond thankful for my infusion center, Texas Oncology, they are amazing everytime I come in. Everything always runs smoothly & they know me by name now. 

Today, the other patients & I were serenaded by carollers in the infusion room. Christmas is still about Christ no matter what the liberals try to push on America & they sang all my favorites. Away In a Manger, Joy to the World, We Wish You a Merry Christmas & of course Silent Night. Christmas is my favorite time of year!!!

If you’re still reading because my Christmas beliefs haven’t driven you away, have a very magical Christmas season & a happy New Year! I will be saying extra thank you prayers for another holiday season with my trusty old colon!

?? MERRY CHRISTMAS! ??