Saturday, May 30, 2015

Five Minute Friday: Blue

If you are friends with me on Facebook and/or Instagram you know that I LOVE to take pictures of the sky! There is just something about the beauty of a natural blue sky that gets me every time. It is so, so wonderful, calming, relaxing, and makes me feel closer to God for some reason. 


 I love to think of blue as the color of the perfect sky on a nice day. Not of some melancholy feeling or mood like some people may think of it. Honestly, when I first saw the word blue, I immediately went to I should find some good quotes with pictures about some kind of blue emotional raw feeling of deep hurt and darkness blue quotes. But then I realized and remembered that I am too happy for that today! I have had an excellent day. I have helped women feel they are beautiful today and yesterday. I have had 2 major incredible blessings happen to me. I have seen beauty happen all around me. I have seen the beauty in myself.


I feel like I live my life like a happy little bluebird. I constantly am trying to figure out how I can fly further, make a more impossible dream come true, how to get past the rainbow to that pot of gold. I am so passionate and driven and want to live whatever life I have left with passion, perseverance, hope, joy, and beautiful redemption of course. I always want to do the things that people tell me I can't do. I want to meet every goal. Make every incentive level. Succeed at everything. I know I can fly beyond the rainbow. Because I am a chronic illness bad ass. I'm stronger than a happy little bluebird and they can fly beyond the rainbow. So why can't I? I know I can. I know I can get to the other side of the rainbow and achieve every dream that I have in mind for my life. Despite every circumstance standing in my way.



I never get tired of sitting on the porch, watching my dog play in the courtyard, working on stuff for 31 or school, or just chilling and watching some TV on my computer, blogging, or whatever, and taking a moment every once in a while and just looking up at the beautiful, vast, blue sky above me. When I see the sky, I get a peace about me. And I know it's all going to be ok. So, you see, to me blue isn't about sadness and despair. Blue is about happiness, peace, joy. Because I associate blue with the sky and how gorgeous it is and how I know how amazing it is and was created by God and how His works are purposeful and perfect. And when I'm staring at the big, beautiful, blue sky that He created that day I also get caught up in the beauty of the sun and that reminds me of God's Son, Jesus, and how He sacrificed His life for me and suddenly, no matter how bad I feel that day, everything feels better. I know God is shining down on me from that beautiful blue sky and protecting me through His Son's sacrifice and holding me close and keeping me safe in the palm of His hands. 



Sunday, May 24, 2015

The ULTIMATE Hospital Packing List

 So I go to the hospital a lot. There is no surprise there. And I'm pretty good at packing for it. I really never want for anything while I'm at the hospital...besides to go home. So I commonly get asked for my packing list. So instead of just emailing it over and over again, I decided to make it into a blog complete with pictures and explanations. Enjoy and please share or feel free to add comments and suggestions if you would like.

o   Documents
o   ID
o   Insurance Card
o   Medical Binder—I highly recommend the ComingHome Medical Binder—I got one at a Mitochondrial Disease Symposium I attended. You can purchase the downloaded version of all the forms and put your own binder together for $10 from this website and make your life a whole lot easier during hospital stays.
  •   If you don’t have a medical binder make sure you have a detailed medication list, medication schedule, diagnosis list, list of all specialists, past procedures, any special dietary needs, nutrition plan, feeding schedule, a list of allergies, emergency plan, any protocols (anesthesia, surgery, etc.),  medical equipment you use, and anything else that applies to you.
The Coming Home Medical Binder



o   Oversized Travel Bag—Something big enough to pack all your belongings

Thirty One Retro Metro Weekender

o   What to Wear
o   Flip Flops/Slippers/Slipper Socks—Something you can wear when you are out of bed (walking around the room, mandatory hallway walking after surgery, going to the bathroom)

Slippers and Slipper Socks

o   A button down or full zipper comfy jacket-- you can put it on even though there are IVs attached to you and all that. Mine is a really thin cotton fleece Under Armour zipper down and it’s slightly large so all the lines fit in it and it’s still comfy and cuddly.

My Jacket that zips up so I can slide it on and off over IV's 

o   Fuzzy & Soft socks—I love having fuzzy soft socks on in the hospital while I’m in bed. Just makes me feel more comfortable and cozy. Make sure you have enough socks of some kind for at least every anticipated night of admission.
o   2 Long Sleeve Shirts, 1 Short Sleeve Shirt + 2 for each expected day you are to be admitted (i.e. being admitted 3 days pack 5 short sleeve shirts) this allows for extra admission days or accidents, just in case
o   3 pairs of shorts, 2 pairs of pants or capris (for 3+ nights; 2 pairs and 1 pair respectively for 1-2 nights)—I usually wear shorts most of the time because I use my heated blanket but sometimes I do like to wear pants and get a little chilly sometimes, plus it allows more options for if there are accidents. You don’t need shorts/pants for every day because they are usually neutral in colors and can be re-worn, the hospital is not exactly the place for a fashion statement…haha. Why do I bring my own clothes y’all may be thinking? Because I HATE hospital gowns! I only wear them for procedures and change back immediately.
o   2-3 pairs of underwear for each anticipated night of admission—this allows for accidents and extra days. You never want to be without clean underwear at the hospital because you never want to wear the elastic fake underwear they have at the hospital. Trust me.

All my clothes ready to go

o   Essentials
o   Dry shampoo, hair ties, brush, comb, bobby pins, etc.—for me the most annoying thing is not being able to wash and do my hair properly every day because of lines. Sometimes you will get lucky and you will have a nurse that will wash and braid your hair for you if you ask, those are the best!!! J
o   Chapstick—the hospital air is dry. Chapstick is a must; your lips will dry out fast especially during NPO periods.
o   Lotion—again the hospital air is dry. Lotion is a must to make sure your skin doesn’t dry out and feels comfortable during your stay.
o   Body wash/soap—so you can clean yourself up with products you’re used to, those hospital toiletries just don’t cut it.
o   Peppermint oil—relieves nausea and headaches, very helpful to help combat symptoms in between med administration times.
o   Toothbrush and toothpaste—obviously you will need to brush your teeth. Purchase a cheap toothbrush before you go in and use it there and toss before you go home so you don’t bring those hospital germs home in your toothbrush.
o   Baby wipes—great for cleaning up when you don’t feel like washing up or to clean up messes if you spill sticky things (like meds or a drink) or get something else on you. Baby wipes come in handy in a lot of ways in the hospital.
o   Hand Sanitizer—hospitals are germy places. Make sure you have this by your side at all times.
o   Tissues- The hospital will have some in your room, but the texture is awful. I MUCH prefer to bring my own, especially the ones with aloe in them because they feel so soft on my skin. They come in little travel packs so you don’t have to bring a whole box.
o   Deodorant—you still want to feel fresh and clean when you’re in the hospital
o   Glasses/Contacts/Contact Lens Solution—Make sure you have this type of stuff with you because you will have to take your contacts in and out for procedures.
All of the Essential Items ready to go in a Thirty One Handle It Cosmetic Bag
All of the Essential Items laid out for display
o   Medical Needs
o   Any medical devices or supplies that you need for your care that would not be necessarily supplied by the hospital—example: I bring with me some slip tip syringes for administering my medications because the hospital usually only has luer lock ones and those don’t connect with my feeding tube, a 60 cc syringe because the hospital ones are cheap for my flushes, a towel for putting over my lap for when I’m doing my meds, Vaseline for helping with my bumper of my tube if it slides up or down, tubie pads, the steroid cream for my eczema, pain relieving cream called Traumeel (similar to IcyHot or Biofreeze but homeopathic), tiger balm cream and patches, gauze for my tube site, splints and braces in case I have dislocations, and stuff like that.

All of my necessary medical items laid out for display
All of the Medical Items neatly packed up, ready to go in another Thirty One Handle It Cosmetic Bag

o   Comforts from Home
o   Pillow—I love to bring my own therapeutic pillow, those hospital pillows suck and they never give you enough and they aren’t supportive.
o   Ear Plugs—the hospital is a loud place; especially at night, right after you just had surgery, you’re in pain, and you just want to sleep off the anesthesia hangover and through the pain,
o   Blankets—I am a blanket snob. I always bring my heated blanket and another blanket to put on top of it so the heated blanket doesn’t get anything spilled on it since it’s harder to wash
o   Favorite stuffed animal comfort item—I love having something with me to cuddle with in the bed when I don’t feel good.
o   A book or two—if you like to read…
o   Nail Polish, Make- Up, Lip Gloss, etc.—if you are feeling up to it, you may want tto pamper yourself a little bit, it brings up the morale.

All of my comforts from home packed up in a Thirty One Essential Storage Tote
o   Nourishment
o   Beverages of your choice (water, soda, herbal teas, hot chocolate)—you can order stuff from the nurses and the cafeteria, but they don’t always have what you want, when you want it. I always bring my own stuff. I use the top drawer of the dresser every time as my ‘contraband’ drawer which includes my next item of…
o   Snacks of your choice—again you can get hospital stuff. But it’s at specific times and sometimes the food isn’t always that great. I love having a couple of snacks with me that I know I want and keep them in my ‘contraband’ drawer. I keep applesauce, hard candies, pudding, and things like that since I can only have soft foods (for pleasure, not supposed to eat at all but the hospital stresses me out), but you can bring whatever you want..
o   Mints/Gum/Hard Candy/Chocolate—makes your breath stay fresh for unexpected guests and helps you have something to chew or suck on that’s yummy, but safe and allowed in almost any admission. Also bring a little bowl. Put the candy in the bowl and leave it out on one of your tables so the nurses and other staff can grab some too, nothing is better than buttering up the people taking care of you. You get much better treatment.

Here is a look at the 'contraband' I'm bringing this time around.
o   Electronics
o   Phone and phone charger—obviously you don’t want to go the whole time without your phone. That would majorly stink. I strongly recommend purchasing a 10’ charger for your phone (can be found cheap on Amazon) as the plugs are often not near your bed and you won’t be able to reach your phone if it’s charging.
o   Tablet—can be used for watching Hulu and Netflix, playing games, and staying connected on social networks.
o   Laptop—if you have to do things with more productivity and more power, or if you are a blogger like me.
o   Power strip—make sure you have enough plugs for all the electronics you bring

You can see most of my electronics, personal items like wallet and keys and such, my medical binder, and my productivity stuff is in this bag that is coming with me. It's my work bag anyway. My office on the go. The Thirty One Fashion Editor.
o   Miscellaneous
o   Cash—for trips to the vending machine, coffee shop, etc. Cash comes in handy but make sure it’s in a safe place
o   Notebook and Pen—Useful to take notes of what all the doctors say and to know what is happening with your treatment plan. Also useful to keep track of your stay and journal to remember and update your friends and family since you may not be as lucid at all times from medication.
o   Thank you cards—I write thank you cards to every nurse I have while I’m admitted and give them to the charge nurse when I am discharged to pass out when I leave. I make sure to write their names down when they come on shift and remember at least one special thing they did for me. I’m sure they don’t get thanked very often and their job is HARD.
o   My own tumbler from home—I like to have my own cup because it fits more, it’s pretty, and you never know when those nurses are going to get you some more drink or whatever so having your own cup and beverages on hand is a great lifesaver!
o   An extra bag for dirty clothes—may I recommend a Thirty One Essential Storage Tote? (I actually use this to carry the comforts from home in on the way up, then use it as a laundry bag there, then repack it with the comforts from home on the way back since EVERYTHING gets washed upon returning home worn or not. If it was in a hospital it is dirty. 
o   Plastic Baggies—These come in handy for so many different things you would be so surprised.  

All my Miscellaneous Items

***If you can't tell I might be an Independent Sales Consultant with Thirty One Gifts. This is how I help pay my insane medical bills that help keep me alive (specifically for my TPN that is not covered by my insurance and is my sole source of nutrition). If you like what you see or you would like to look at some of our other products, please feel free to visit My Thirty One Site and do some ordering. I would so greatly appreciate it!!! Thank you so much!! 

I hope this blog gave you some useful information!



Five Minute Friday (on a Sunday, again): Rise

As soon as  I saw the word 'rise' the Chris Tomlin song "I will rise"  popped into my head and it's been playing on  repeat ever since. I confess the only words that I knew off the top of my head were "I wiill rise when you call my name, no more sorrow, no more pain" but those words were enough to get me to go and look up the lyrics and see if I wanted to write about this song in this blog about the word rise.

Let me just say. As soon as I started reading the lyrics. I just sat there. I was like. Um, I've never really listened to this song, why not, why has God been trying to get through to me so long and it took until just now to get through to me (P.S. this was started on Friday...so Friday is when this happened not Friday).

In my opinion, and you can ask almost anyone, my life is in complete shambles. There is nothing going well and there is no where to go but up...but I do still believe I am going up and I have been completely satisfied, happy, calm, and happy with EVERY road block that has been put in my face. I mean I have been so sick, so, so, so sick and I'm just like ok, we get used to this new way of life right now. I got academically dismissed from my university (don't even ask) and I'm just like ok, I'll go back next year, or not at all. There has to be a reason for all this. I'm having some friend issues, no problem, just move on. Getting harassed on Facebook, just delete the conversation and go about my day. I am telling you, nothing can get me down. I have complete peace when life SUCKS and I couldn't figure it out.

Then I read these words and wow. Just wow.

"There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say, it is well
Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead
And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagle's wings
Before my God, fall on my knees
And rise, I will rise"

It could also be because I've been channeling my inner Meredith Grey since we are so much alike, as this was the last line of the season finale and it REALLY spoke to me and that was 2-3 weeks ago, long before this word 'rise' was presented to me. I posted it as a Facebook status and everything,,,that must mean it was life altering...haha...
"Ok we have to dance it out. Let's go...people can be broken, sure. But any surgeon knows what's broken can be mended, what's hurt can be healed, that no matter how dark it gets, the sun is going to rise again." -Meredith Grey 
 All I know is that this year I made my word for the year (the thing I do instead of doing resolutions I pick a word to hone in on for the entire year and work on developing) 'Beautiful Redemption'. And I really don't think you can have a 'Beautiful Redemption' without the ability to rise. I know I am strong enough to fight the battles put in front of me. I know I right now I am broken, I know I am hurt, I know it's dark. But I also know that I will be mended, I will be healed, and the sun will rise again.


Sunday, May 17, 2015

Five Minute Friday (on a Sunday): Follow

I'm joining the Five Minute Friday revolution as of now and really meant to write on Friday (and earlier today) but for some reason my heart always wants to blog in the middle of the night or at random times not on schedule.

If you are unsure of how Five Minute Friday works or what the heck I'm talking about head to the link above and there will be complete information explaining how it works but basically it goes a little something like this...

Every Thursday night a one word prompt is posted then on Friday you write for five uninterrupted, unedited minutes about what that word means to you right now, I think this will help keep me more faithful in my blogging and in my spiritual journey as I've not been blogging much lately (which will be explained more in depth this upcoming week, I promise...but for now let's get this FMF project underway with this week's word of follow.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
It's really interesting, no coincidental, no God's perfect timing that the word this week is follow.

If you know me in real life or through Facebook, you know I've just come through the HARDEST month in my life by far...and let's just say I did not exactly come out gun's a blazin'.

After being sick non-stop since October/November (there will be a more detailed blog post to come in the near future about this) my body finally decided it had had it around April 20th and I almost succumbed to my mitochondrial disease due to a sinus infection, ulcerative colitis flare, C. Diff, almost pneumonia, electrolyte imbalances, normacytic anemia, and my gastroparesis all being butt holes (literally) and landing me in the hospital for a full week with little hope and extreme frustration and a sense of gravity of the situation that led me to believe this was it, My number was up. I was going to die.

But alas, as you can tell, I made it through just fine, Or so the doctors say.


In reality, my whole life fell apart.


I was changed from tube feeds (feeding formula into my small intestine) to TPN (total parenteral nutrition or feeding nutrition through my veins) because my colon and small intestine couldn't take it anymore.Now I'm on even less oral feeding and the oral feeding I do do, because it brings me pleasure is extremely painful and causes a whole host of symptoms no one wants to know about. The discrimination findings came back about *that* professor and it was determined that he was not performing any discriminatory acts because it was he said/she said. And because I was in the hospital the last week of classes I was not allowed to complete my courses and got a 0.0 GPA this semester and was academically dismissed from my university. Because all the sudden after having a 3.85 GPA for the whole time in the program, I deal with this one professor who states to my professors this semester that I have a "history of not completing work on time" and do not need an extension even though I'm in the hospital. ME. A person who has never received a project back because it was always kept to be used as examples for the next classes coming up. ME. Who with 25 chronic illnesses never missed a day of school unless I was forced to,


So, my dear readers, when I saw that this weeks word was follow. I was like, "ha, that's funny. What the heck am I supposed to follow? Everything in my life has just been taken from me. All my goals, dreams, plans, my health, my social community, my friends, my money. What is the point of following anything?"

I'm telling you, I don't usually openly discuss my anxiety and depression on this board. But everyone with chronic illness has it and if they tell you they don't your lying. And I'm telling you, right now. I am at the bottom of the ABYSS. I am DROWNING. And I'm not gonna lie about it, or hold it back, because I feel it's imperative that I tell the truth. 


Luckily I'm a Christian and I soon realized that all I needed to follow was God's plan for my life and that is all that mattered and sometimes His plans are not what we want, but what we need, and always are in His perfect timing. Right now I am leaning on Him, trying to follow him into the uncharted territories that I am treading in ever so overwhelmingly. Trying to live out the Bible verse above from Ruth 1: 16 that states, "Where you go I will go, and where you stay I will stay." I am trying my hardest to trust, follow, and LEAN IN to God when it seems so impossible right now.

But I think I am on the right track, Things keep getting brought to mind of what I can do with where I am right now (help in support groups with my already learned medical knowledge, appeal to the school to get back in, become a patient advocate, rock out with my 31 business so I have some income besides my disability). And I think these positive thoughts are coming to my head because I am trying, at least attempting a little to FOLLOW God's plan for my life. I'm trying to be still and listen. I'm trying to see where this leads, I'm trying not to do this on my own. And when we have the support of not only our earthly friends (which I have a ton of--thanks guys) but the support of God and we follow His will for our life, nothing will go wrong, and He will create beauty from the ashes.

Tuesday, April 7, 2015

Health Activist Awareness Month Again...Wordless Wednesday

Hey Y'all,

So I totally forgot it was April. So I totally forgot that it was Health Activist Awareness Month. So it's April 7th (basically 8th because it is 9 minutes until midnight), so I am getting ready to try to catch up because I LOVE health activist awareness month challenge! It brings so much awareness and it brings me so much discipline. So I apologize in advance for the multiple blogs back to back.

So here we go!

April 1st: Wordless Wednesday: Since this is the start of HAWMC, post a picture that shows how excited you are for the next 30 days. We always love a good Health Activist selfie!







Saturday, March 7, 2015

Broken Halleljuah

***Disclaimer: This blog will contain the lyrics to the song "Broken Hallelujah" by The Afters centered, quoted, and italicized throughout this post. These are not my words, but they are the words of brilliant people who know exactly my heart at this time. I take no credit in what they have written and I encourage you to go to their website, listen to their music and perhaps download a song or two, this one for sure is highly recommended.****

In the past four months my life has completely been turned up, down, sideways, forwards, backwards, and everywhere in between. I have literally been sick with a sinus infection for four straight months. I have been on antibiotics for two months. Because I have an infection and I'm on antibiotics I can't get my Remicade infusion that helps with my Ulcerative Colitis so in addition mito the already bad effects of antibiotics on a typical body, add in a flaring UC body, a failing GI tract on a feeding tube, and just general persistent nausea and a miserable person you have. And I can't get the Remicade again until my infection is gone and I've been off antibiotics for two weeks. We know now that the infection isn't going away without surgery and it could still be another 2 months before we can do that and have the 2 week recovery period be over. I am miserable. I am SO sick and am getting so depressed because I just cannot get better. And I am SO upset that all of this progression of my disease is happening because of a sinus infection, which would usually barely phase a typical person but for a week or two and it's literally got my entire body shutting down for months on end. I literally cannot find the strength to stand or get out of bed every day, but I have to. Because I have so many responsibilities in life for someone who is on disability and isn't necessarily supposed to have a large amount of responsibility to begin with. but responsibilities don't disappear just because energy and health do.

"I can barely stand right now.
Everything is crashing down,
And I wonder where you are."

I have friends that are going through impossible circumstances right now. Friends that I love dearly and deeply. Friends that live all over the country so I can't run to them, hug them, and hold them and let them cry with me, to me because that's what happens when you're chronically ill. You don't have any friends in your "real" life. In your everyday life. No one wants to be around you because you are sick, so they dump you and run away. So my friends are in my Facebook support groups and they are seriously some of the best friends I could ever ask for. Such good friends that I can almost thank God for giving me illness because otherwise I would have never met these truly genuine friends. But dear goodness it's hard to be there for them. To sit there on the phone with them. To listen to them cry and scream and shout 'Why me again?' when they are dealing with these impossible situations. And then there is silence...because I have no idea what to say.

"I try to find the words to pray
I don't always know what to say, 
But You're the one that can hear my heart."

Would you know what to say when you are on the phone talking to a friend who is dealing with the possibility of losing their child to Child Protective Services because they have been accused of medical child abuse and Munchhausen's by proxy...again. Or that they may lose their child because they have so many bruises the doctor thinks they are being abused when, in fact, it's because they have a child with a condition that causes easy bruising but the doctor has never heard of it so it must be child abuse instead. Or that they are going to lose their child because they are too unwell due to their chronic illness to take care of their child and their ex tries to take their child from their custody because of that. Or their current relationship is in a constant state of flux due to the fact that one of the members in the relationship is sober on and off and on then off again. And when they're not sober they are extremely emotionally abusive and get very close to becoming physically abusive, but when they are sober they love them so much and just can't leave the relationship. Or they have a child that is having their 3rd brain surgery in 3 months. Or on and on and on....What would you say? What would you do? My only answer is to pray and wait and listen and see what God wants me to say and pray some more and then find out from God that I should probably not be saying anything at all...and then I just listen to them...and cry with them.

"You know the things that have brought me here.
You know the story of every tear.
'Cause You've been here from the very start."

I've also started having more of the all to unfortunate realization that I live in a terminal world. A world with a deadline. I won't say an expiration date because we all know that I believe that death is not the end, but the beginning of a much better totally healed life. But a deadline. I'm meeting more and more friends that have the word terminal on their name tag like me. But with the meeting of these people, is the obvious saying goodbye to them far, far, far too soon. A 16 year old girl, an 8 year old boy, a 42 year old mother, a 35 year old father, etc, etc, etc. Just this week I personally know of a middle aged father, a 5 year old boy, and an 18 year old girl all succumbing to their illnesses. Wonderful, amazing people all of them. All gone far too soon. For I realize the longer I live in the terminal world the truer the statement is that 'only the good die young.' And I wonder why. I try to figure out God's plan. Then I wonder when.

"Even though I don't know what your plan is,
I know you're making beauty from these ashes."

Don't get me wrong. Living in the chronic/terminal illness world has been some of the best living I have ever done. In fact, I almost wanna say I wouldn't have not known how to live had I not been told I was going to die. I live with hope, passion, gratefulness, joy, thanksgiving, love, and an ability to see beauty in things others cannot see. I have learned to live for the day and not for tomorrow. I have learned to find extreme awe in weensy things. I have found my passion in life and have had the courage to go after my passions and achieve them no matter what is standing in my way. But as seen above I have also seen an insurmountable amount of pain, and this post doesn't even cover the half of it. But with God's help, I still am able to maintain that He is there. He is holding me in the palm of his hand and is wrapping me up tight. And He has this journey that I'm on. And I will continue to call his name. 

"I've seen joy and I've seen pain.
On my knees, I call Your name.
Here's my broken hallelujah."

At the present moment however. I feel like I'm drowning. I feel like I'm in a room that is just a square room with no windows, no doors, no grooves on the walls or anything and it's shrinking faster and faster and I can't get out. Nothing to hold myself up. Nothing to tell me what to do. Nothing is left. I am tired. My body is tired. I have been fighting for so long. I did have school and my passion to become a dietitian and help others with chronic illnesses to hold onto but right now even that is slipping away from me, and I can't make it stop. I'm trying to make it stop, but the ultimate decision isn't mine. I'm empty. I'm weary. All I can do is literally give my empty self to God. And keep believing He is holding me, wrapped up tight, in the palm of His hand.

"With nothing left to hold onto,
I raise these empty hands to You.
Here's my broken hallelujah."

I'm not there yet, but I am progressing quickly. I am losing my ability to do things that I really enjoy. I can no longer drive longer than about 20 minutes without falling asleep at the wheel. I can't do any type of physical activity/exercise which used to be my life. I can no longer even focus on my schoolwork very well anymore. This will get to a place where I will literally lose everything. And it will be a painful-physically and emotionally-journey. I will deal with more issues daily like all those listed above. I will deal with injustices of insurance companies and not getting the treatment I deserve. I will be scared. I will be tempted to lose my hope, my joy, my gratefulness, thanksgiving, my passion, my love, and my ability to see beauty.

"When all is taken away, don't let my heart be changed.
Let me always sing Hallelujah.
When I feel afraid, don't let my hope be erased.
Let me always sing Hallelujah."

If I could have just ask for 3 things in my chronic/terminal illness life at this point, it would be  the knowledge of knowing that I am strong enough to not lose my hope, passion, joy, love, gratefulness, thanksgiving, and ability to see beauty. That I will continue to believe with all my might in the quote: "I'm realistic, I expect miracles." And that I will never stop singing my broken Hallelujah.

"I will always sing.
Here's my Broken hallelujah."






Friday, January 2, 2015

2015: A Year of Beautiful Redemption

Every year at the beginning of the year, I choose one word that I am going to focus on for that year. I got this idea several years ago while listening to the radio in the car. Usually people make New Year's resolutions.  But seriously, I can barely keep things constant in my life for one day...heck one hour sometimes I can't keep things on track.

So the whole premise of what I try to do is keep in mind one word that I focus on throughout the year and try to live with that word in mind intentionally and live my life that way. So far I've used the words: faith, ambition, hope, and joy.

Even if i try to live this way for the whole year, it is still not always NEVER successful for me to live with that 'intention' for the whole year, each day, all the time--hence why I know I will never succeed at a list of resolutions...haha...if I can't even come up and follow living by one word.

This year though, I need to have two words. It's what I've been feeling. It is clear to me.

You see I never really pick my word, my word picks me.  Every year.

After the horribly rough year that I had last year--living my first full year knowing I have a terminal illness and dealing with a discrimination situation with school beyond reproach, I need a year of healing. But healing is such an obvious, yet abstract word for someone like me. So this year two words have picked me. This year, I will live a life of BEAUTIFUL REDEMPTION, as best I can that is.


Redemption is defined as: the act of making something better or more acceptable; the act, process, or an instance of redeeming. 

Redeeming is defined as: making a bad or unpleasant thing or person better or more acceptable.  And to redeem is to make (something that is bad, unpleasant, etc) better or more acceptable; to free from what distresses or harms;  to change for the better; repair/restore; to atone for.

After what happened with school, we all know that I have some things that I want redemption for. 

Enough said.

I know God's got the redemption  in the bag, but it's not bad to be reminded of that, and to use my life, my story, my passion, my drive and ambition to get redemption for myself also. Or at least make me feel like I am redeemed, even if i do not get it to the level that I want it to be attained. 

I can rise above.  Even if it never gets back to those involved, I will know that I did the best that I could do with what I had and maybe helped some people along the way. 


Beauty is defined as: the quality or aggregate of qualities in a person or thing that gives pleasure to the senses or pleasurably exalts the mind or spirit; a beautiful person or thing; a particularly graceful, ornamental, or excellent quality.  

Lately, I've been stuck on this word beauty.  

What does it mean to have beauty? 

It's so hard to feel beautiful when you spend so much of your life curled up in bed and feeling so bad and on the days you feel your worst you end up dressing up because you are sure if people see how you truly feel (if they could see an invisible illness) they would be horrified and turn and run the other way.  

It's hard to feel beautiful when you are 29 years old and basically go completely bald and have to deal with that--until you find the perfect wig that is. 

It's hard to feel beautiful when you're in a wheelchair or walking around with a tube hanging out of your abdomen and a line hanging out of your chest, even if they are all helping you have a better quality of life and keeping you alive. 

But then that is when you I have to remember that the definition of beauty talks more about qualities than aesthetics and it makes it all alright. 

I've realized that again, by sharing my passion and purpose I am beautiful. 

I have since come to love the phrase "Be your own kind of beautiful," because everyone has something beautiful about them.


Each day this year, I resolve, no, intend to remember everyday that I am living a year of BEAUTIFUL REDEMPTION

I will find a word, a picture, a thought, a deed, something everyday that makes me feel as if I have satisfied my intention of beautiful redemption that day and I will document it somehow. Instagram, Facebook, blog, journal, somewhere. Then at the end of the year, I can look back throughout the past 365 days and see that because I have an awesome life and serve an awesome God that I have, in fact, been beautifully redeemed.