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!!!

Health · Sparkle · Ulcerative Colitis

Eat Your Way to Healthy Hair Series

I know, that you know, that I know you can eat your way to healthy. That’s fabulous news for those people with health problems. This post by no means takes the place of medical advice but does show that a little research and planning can be your best line of defense when faced with health adversity.

I know we are all busy and the easy way to eat is by consuming those go to foods that are fast or comforting to get us through the day. If you’re like me, it depends on my mood, what’s going on that day, if we’re in school, and blah, blah, blah but in the back of my mind, that little glitter dipped conscious always gets me. She asks, “is that healthy for you and does it get you to your goal of great health?” That little lady has a point & I need to try harder to find the foods that work for me & not against me.

 

Researching the foods you eat or the foods you need to eat to achieve a fix to a health problem is fairly simple, but who has time for that? I mean, my 2 year old needs someone to hold him and my 7 year old is learning to do summer chores which means I follow behind him to “tweak” his work so who really has the time to scour Google for the right foods?

 

Welcome to my series on healthy hair, skin and nail foods. I’ve done the work for you and if there’s more you want, comment with your topic suggestions. I have a few other health issues already in mind for future topics but I would love to help my readers out with their problems so comment below or shoot me an email at sparklewithuc@yahoo.com. I have also created a Facebook fan page to keep you in my world & up to date so follow SparklewithUC on Facebook, Twitter & Instagram.

 

Sooooo, back to my particular interest which today is hair. Some like it short, some like it long but the common recurrent theme is that we all want it there, except those who shave their heads, obviously they don’t want it but that’s a whole different story altogether.

 

For so many years before getting sick, I took prenatal vitamins; before pregnancy, during pregnancy and for quite a while after pregnancy. I had dr’s tell me and read so much stating that prenatal vitamins are the best avenue for healthy, thick hair. Before my sick days started 5 years ago, I whole heartedly believed every bit of the vitamin hoopla and religiously took my vitamins every evening with supper (because they made me nauseous).

 

Fast forward 5 years to 2017. my body does not absorb vitamins like it should, especially when in a severe ulcerative colitis flair. Basically, my body is in flush mode when I’m flaring and vitamin capsules or tablets don’t have adequate time to absorb before they’re flushed by my system. For this reason, it is best to eat my vitamins through solid food choices.
I must also mention that I would totally be ok with a handful of pills if I was, say, 90ish, give or take 10 yrs but I’m not so I’m trying to narrow down my handful of morning meds by replacing vitamins with foods heavy in those vitamins.

 

When you search ‘foods for healthy hair’, so many fabulous articles pop up. Here’s a few for your reading pleasure:

 

11 Foods and Natural Remedies for Healthy Hair Growth

17 Best Foods to Stop Hair Loss

8 (Actually Delicious) Foods That Can Make Your Hair Grow Faster

7 Food Fixes For Thinning Hair

 

The problem isn’t that there is not enough information out there to support natural food sources to grow healthy hair but who has the time to read and read and read to figure it all out?!?!?!

 

Search no further! I’ve got your back! I have included in this article the vitamins that I will be discussing throughout the next series on naturally healthy hair. Now, this isn’t a fast fix for super long, super thick hair so don’t be fooled by internet claims that this is even possible. The only way to grow super long, super thick hair is to eat foods that contribute to healthy hair growth and have patience.

 

There are 8 vitamins that provide necessary nourishment to grow healthy hair. You get an added bonus when finding food sources that are high in the 8 vitamins and are also vitamins that have a plethora of benefits beyond your hair! #winning

 

Those 8 necessary vitamins are (in no specific order to their importance):

 

In this series I will discuss the importance of each vitamin and how it contributes to healthy hair. I won’t stop there though! You need to know what foods are high in that vitamin as well as a shopping list to stay on track.

 

You’re welcome! Now go sparkle!!!

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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!

Ulcerative Colitis

Love ❤


Sparkle like you mean it!!!!
P.S. Teacher friends, spring break is t-minus 1 1/2 days away!!!!!!!!!!!!!

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!

Ulcerative Colitis

Thighs

Ahhhhhh, when I gain weight, its more than likely in my thighs and glutes. This causes my pants not to fit, or zip. Wait, not zipping is a waist problem! Well, I’ve got a few target areas apparently but this month is going to be the thunder thighs!

 

<Insert your own picture here because when you search ‘thunder thighs’ on Google, there are a plethora of pictures but nothing motivating for me.>

 

Actually, I found one to feed my “Keep Calm….” obsession.

Image result for keep calm and work your thighs

 

So I took to Pinterest because they are the ‘make you feel bad about yourself’ workout center and I found several interesting, do-able thigh workouts. I’m going to share them with you each Monday. I know, today’s not Monday but when ideas hit, let them flow!

 

Before you start this progression on February thigh workouts, grab your measuring tape and measure those thighs. Keep it secret so you can wow your hunny with inches lost as you go.

 

Today’s workout is courtesy of SPOTEBI. Your mission…do this workout daily until you hear from me again.

Sculpt your glutes, hips, hamstrings, quads and calves with this lower body workout. A routine designed to give you slim thighs, a rounder booty and legs for days! http://www.spotebi.com/workout-routines/lower-body-workout-thighs-booty-legs/:

Ulcerative Colitis

Help!

I’m trying something new in my classroom to motivate students.
Please send me links to you favorite motivational videos & quotes that I can play for them or print pictures of the quotes for my hallway. I teach 7th graders so something they would find helpful.
Have a sparkly Friday!!!

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!

Health · Mommies · Stress Relief · Ulcerative Colitis

I ❤️ naps!


I mean, I really really love nap time, especially those weekends following crazy weeks where our household doesn’t stop going until bedtime. Today after supervising a group of STAAR testers & then keeping them quiet for another hour after they finished testing. I’m exhausted! I could really use a nap!

This is my second blog about naps so I might have an unhealthy attachment to napping of any length. I’m best with a few hours but I’ll take a cat nap if that’s all I can get.

Through my research I’ve learned that 10 to 20 mins boosts alertness & energy. Yay for that, but it’s a little too short for me. 60 mins shows an improvement in remembering facts. Awesome! This is what my school kids need everyday. Why did we stop napping after kindergarten if it’s so beneficial to memory?! 90 mins can show improved emotional & procedural memory & creativity. Once again, that would be super beneficial in school.

Sadly, somedays I’m lucky to get a short power nap before my littlest man wakes up from his nap. Power naps greatly benefit areas that I’m seriously lacking in. Probably most of my issues can be contributed to having children or sleep deprivation but some could come from my diseases. 

I am probably extremely boring to those around me but I find a nap exciting! I am a WILD woman! This picture is so true, minus the quilting, I’ve never done that.

I can’t wait until the weekend for my naps!

Entyvio · Ulcerative Colitis

Iron is the Devil!

Iron is the devil! Ok, so maybe it’s just red like the devil but still, you can’t take an iron pill & not wonder, it’s torture enough to be anemic, why the funky side effects?

I got a call from my dr stating that she ran several iron tests and they were all severely low. That is very common with ulcerative colitis but why?

The internal damage caused by UC frequently results in blood loss. What would you expect when your colon, in my case entire colon, is filled with cuts that are effected by everything you do including diet.
I had a theory that Entyvio would heal my gut so that I wouldn’t have bleeding intestines anymore. Well, that recent blood work discounted that theory!

I’ve read the symptoms of anemia and it’s like a checklist! Fatigue, check, muscle aches & pains, check, being cranky, check! I knew there had to be an explanation for my crankiness! Doesn’t look too bad just looking at the symptoms but I wondered what damage it was causing internally.

Losing a substantial amount of iron leads to anemia because your body uses iron to produce hemoglobin. Hemoglobin carries oxygen throughout your body which must cause the fatigue. Lack of iron means lack of hemoglobin therefore your not producing new red blood cells. Whoa, that sounds dangerous! Without the production of red blood cells, your body does not get enough oxygen. Thanks to WebMD for my new found knowledge of anemia.

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So what’s my treatment plan for now you ask? Keep calm & sparkle on of course! Whatever the plan is will have to be long term, she said at least a year once we find a good balance. I’m taking a chewable called Easy Iron for faster absorption so my gut can’t flush it before it can absorb. Unlike ferrous sulfate, it doesn’t cause constipation (that lovely side effect I mentioned earlier). I also added in a slow release iron supplement for a little extra boost. My body is adjusting to the re-introduction of the slow release formula which I took like clockwork for several years until the dr said it was not enough. I can already tell a difference in energy levels so hopefully the aches & pains follow that path.

An iron rich diet can also play a significant roll in decreasing anemia & ramping up hemoglobin production. I looked up a list of foods rich in iron & some make my list to add to my diet & some need to hit the road!

I’m good with:
*Spinach, as it’s the only salad I can have.
*Seafood, when I think to buy it.
*Iron fortified pastas, would be ok.
*Peas, never knew that one but I like them.
*And last but not least, my Achilles heel, red meat. I love steak & hamburger meat but it’s so hard for my gut to break down that I have to eat it in moderation. I shoot for 3 or less times per week.

I’m not game for:
*Beans, UC patients already have enough gas produced by the ulcers so nope, not unless I’m eating Mexican food.
*Pork, bacon is our only pork in this house.
*Iron fortified cereals & bread, not a big fan of either, unless Lucky Charms is iron fortified.

So for now, I pop iron supplements like crazy & try to balance that with an iron rich diet. The red devil is not gonna win this time. Instead I’ll blow a few red sparkles in his face and remember Ephesians 6:11. “Put on the whole armor of God, that you may be able to stand against the schemes of the devil.” He may be up to something but God’s up to something bigger!

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