Tuesday, March 31, 2015

The Girl Who Drinks Salt Water

this is my sodium chloride (salt water) pills crushed into my water bag that connects to my feeding tube

I drink salt water...Do you want to know why???
I actually a medical reason called Postural Orthostatic Tachycardia Syndrome a.k.a. POTS. POTS is a form of Dysautonomia and causes upon standing; the heart rate to go high and the blood pressure to drop low. This makes the blood not get to our heads and causes us to pass out. We also suffer from low blood volume which means the fluid in our blood and bodies are just not as they should be they are low...because our kidneys kick out all our sodium (sodium holds onto the fluids in your bodies) So we have to replace it by getting in 10,000 mg of sodium and 2-3 liters of fluids per day. no none of that was a typo. haha. The diet is to simply build the blood volume back up. We also tend to have our blood pull to our limbs because our veins like to be lazy and not push our blood upwards. Some say POTS is rare but I doubt it is, IT IS HOWEVER RARELY KNOWN ABOUT in the medical world. Yes, only a handful of DOCTORS know what POTS is or even of it's existence. Dysautonomia comes in different forms but it POTS... Dysautonomia is a neurologic condition that causes the autonomic nervous system to malfunction for unknown reasons. I have several other complications and symptoms due to Dysautonomia such as; small fiber neuropathy (very painful myalgia of the sensory part of the skin basically. It even causes "bone pain" strange right?), migraines, eyes rolling back onto my head/tremors (I think maybe seizure tendencies but haven't had enough time with new neurologist yet to get to that haha), memory issues, subjective hearing loss, vision changes, eyes dilating funny, muscle weakness, nausea/vomiting, and everything in between ... it has even caused my stomach and small intestines to be paralyzed a.k.a Gastroparesis. Bottom line is this needs some serious awareness and you can help... I did a Facebook challenge yesterday called #squatsforpots. the link is here and please go to this link to Dysautonomia International and learn more about POTS and please, please spread awareness by doing the #squatsforpots challenge with your family and friends! Pressing Forward!-Chelle

video
My video watch and learn :)

the link for Dysautonomia International/#squatsforpots: http://www.dysautonomiainternational.org/page.php?ID=206
P.S. a huge thank you to Brittney Hollinshead a wonderful inspiring POTSie!

Monday, March 30, 2015

General Women's Session, my thoughts

I viewed the General Women's Session Saturday night. One of the topics where "The family is of God." This moved me to thinking more about my future family. Something that for me is scary to do. Being sick has challenges and dating has been definitely put in the back seat. I don't just date or believe in just having a boyfriend. I believe the relationship should always be a stepping stone towards marriage. But not to confuse what I am saying with you should just get married to whomever you date. I just mean the intent of marriage should always be in the future. Unless it's not Mr. Right... I still feel strongly that it is not the right time for me. So I will continue to wait until I feel differently. I know the place where I am right now, simply isn't the right time. It will come eventually... when the time is right... I don't know when but I know not today. I know this the most when I pray about it. When my heart feels differently I will then act. My health problems make it different. No not difficult. Different. I know whoever decides to marry me is going to have to have a lot of strong qualities... like patients, compassion, a deep understanding of chronic, living a whole different lifestyle, etc. It's a fact that it's a challenge being with a chronically ill person. But I know it can work and will when the time is right. P.s. I don't mean by when the time is perfect either lol because... is there such thing? Okay, I kinda strolled off my main topic that as of now I do not know if I will ever get pregnant... I know I will have children one way or another. But here's a few examples A. By choice due to it might not be the safest, I could get even sicker, and I could be so ill I miss out on raising my kids. B. I have Endometriosis one of the top three causes of infertility, I have gastroparesis and nutrition worries me a little, my blood pressure is wacky constantly. And much more....But I don't need to waste a lot of time here on this because I believe when that time comes with lots of praying and guidance from my heavenly father, I will know what to do. And you never know doctors and scientists may know more about it by that time or have cures. I trust in the Lord that in due time that he will let me know! But one thing is sure I will have a family. And I will share with them goodness and light... and of God and Jesus Christ. That's my earthly purpose at the end of the  day. Even if it is not picture perfect, it will be just fine because it will be of God. Family is number one always our current family now and our future ones to come! My family is in the kids are grown and no grandkids stage. It's a fun stage to be in we all get together and enjoy our time... but I know one day in the most likely nearer future things are going to change. There will be grandchildren and eventually I will find my Mr. Right. I like that I don't get too caught up in the future worries. I could worry all day about what-ifs. Something I know are blessings come in due time. God has heavenly plans for us, we just have to trust even for family planning. We are all children of God. He loves me, you, every single one of us. "The family is of God."-Chelle
To view the General Women's Session click the link.
https://www.lds.org/general-conference/sessions/2015/04?cid=HP_SA_3-28-2015_dPTH_fGC_xLIDyL1-B_&lang=eng

Wednesday, March 25, 2015

hmph

I think my dessmopressin is helping my POTS.... kinda early to tell. Whatever makes this body of mine happy so I can move forward in life! However my Lichen Planus is just not letting up which means I get to pup my dose of Imuran (anti rejection medication used after transplants, that suppresses the immune system so the body doesn't fight off the new organ basically) which means my immune system will be even further suppressed. One day at a time... right??? :) I got this. I really wish I could heal all the ill and afflicted, or at least help them somehow.... hmph-until I blog again-Chelle
My body truly is rallying against me tonight, a weirdly long lasting bloody nose, extra nauseous (which equals dissolving zofran to the tongue)... not winning at upping my feeding rate it backed into my stomach, and a major thumbs down.

Tuesday, March 24, 2015

Flared...

I returned home this evening.... specialist seen, my body decided to have a Lichen Planus flare just in time to see the doc! Lucky for me, I made my appointment a month prior and when it came...surprise a flare! At first I was irritated, then I realized it was a blessing as unpleasant as it is. My POTS is also flared, you could say and my Neuro called and spoke with me after I twitched and was in intolerable pain the whole night and days prior. I also can't see very well and my hearing is funky. I also have slower motility I can tell. I even had the fun eyes rolling into the back of my head unit uncontrollably. Neuro put me on a medication that will make my kidneys hold onto fluids and sodium more in hopes to please this body of mine and fingers crossed it will behave. I am worn and miss my pup xoxox until I blog again -Chelle
Here's a link on what Lichen Planus is: https://www.aad.org/dermatology-a-to-z/diseases-and-treatments/i---l/lichen-planus

Saturday, March 21, 2015

Inside our portals of pains

"the pain remind this heart this is not our home." Blessings, Mercy River (song) Today was challenging for me. I was up until 3a.m. last night in bad pain from the week of rain. Basically my body was done with the rain and screaming at me. The pain localized in the middle of my spine and lasted all day. In fact I still have it. It wreeked havoc on me physically then, mentally. In fact so bad the muscles in front of my ribs that line the esophagus area started hurting badly from being tight and fighting the back pain. Pain is something I am going to have to deal with the rest of my life. This too physical and emotional. We all do at some point right? I just chronically get this reminder. Sometimes I just  really long for normalcy. I just want a regular day. The pain kinked that chance of normalcy for today from the get go... but then when I got ready to leave my house (this happened yesterday too mind you) I put my flush and feed bags and pump in my backpack and BEEP.... alarming beeps one after another... the whole time. Until my frustrations built and I just turned it off, fuming mad. (Maybe even a little too mad) so you can imagine today frustration hit fast. I just felt suffocated and pushed to my limits and I was... it happens. So I call the home health pharmacy and ended up on the phone for at least an hour. I will be getting another pump tomorrow and I pray it functions right for more then a month or a week. Then more frustration came over me knowing I wasted time and always do with these situations...and the end to these situations is simply non existent. I also have lost much sleep from constantly BEEPING all hours of the night.  Also a lot of anxiety builded up knowing in my mind Monday I have to go to Phoenix to a specialist and it will be an all day backpack trip... Plus the heat shall be there and I am heat intolerant because my autonomic nervous system doesn't work right. This ends very badly for me when this happens. I can dehydrate due to my POTS for no reason. I have to have extra fluids and sodium daily. So heat can put me in a tizzy just walking from car to inside. I hate it... I am hoping it isn't as severe this year with nutrition and better hydration. But I just am bugged. Tonight I broke Down. Sometimes our vision is blocked and we can't see the end of the road. It's part of life, like it or not. I particularly really don't like it, haha which is funny because I have been given a life with a lot of no control of situations. God is building me. He pushes us all, to better us. We all want normalcy and to be like the next person. But we have all been sent here different. Not one of us is the exact same or will live the exact same life. None of us. No one.because we all are meant to be unique. So we can bring something to the world... teach and learn. God I know intended this. I don't want to be normal when I remind myself of my purpose here on Earth. You have the same purpose to live a fulfilling life and grow and teach too. Even I do in the un-normal circumstances of my life. No matter what the storm you endure.God loves you. He is patient and awaiting for us to learn, grow, and love. My heart desires no pain but my life desires pain. Just like the lyrics above that's a reminder that "this is not our home." One day we will be ridded of our earthly burdens...it's in the meantime what we take and do with these situations where we handle them... how we let them define us. I read a quote from dieter f. Uchtdorf yesterday, "It is your reaction to adversity, not the adversity itself,  that determines how your story will develop."-Chelle

Wednesday, March 18, 2015

Family Love

When I was praying last night, I prayed for my family to know how much I loved them. I got an automatic answer of only you can let your loved ones know how much you love them... wow how completely true! Our families are so precious. Think about it, God sent us to our parents,grandparents, aunts, uncles, sisters, brothers, cousins. We were sent here to be together. To help each other along the way. To lift each other up. Then to spend eternal life together. What a precious plan of love! I guess I will be working on that because that is in my power and is my job ๐Ÿ˜Š Mom,Dad, Chelsey,Billy I love you always and forever. No matter what๐Ÿ˜˜
My family is my biggest blessing. My rock!-Chelle
" in the cottage there is joy when there's love at home, hate and envy ne'er annoy when there's love at home. Roses bloom beneath our feet all the earth's a garden sweet. Making life a bliss complete, When there's love at home. Love at home, Love at home. Making life a bliss complete when there's love at home." -Love at home. Text and music:John Hugh McNaughton, 1829-1891.
 

Tuesday, March 17, 2015

What Scripture Study Means to me

Scripture Study is not always something I have done in my life. It wasn't something I was raised doing nor really taught. I did receive my scriptures at age 8 when I was baptized into the Church of Jesus Christ of latter day saints. I remember for a time after that trying to read them and just having no understanding so I quit. Then one day Heavenly father told me I needed to read the scriptures. I knew I had nothing to loose and everything to gain. I have periodic times where yes even as a grown up I have a challenge of comprehension. And time where I fight it and go oh tomorrow night... but I have learned to keep my scriptures on my bed so I cannot forget them. Plus I feel comforted with them there to peruse at my leisure. They even act as a sheild for me and protect me from bad because I just have to open that book and goodness and light are there.  Reading the scriptures help us to keep our lives in prospective. By choosing the right to just keeping on track and it reminds us the true importance in life. That is so easily kiltered off track. We feel the holy ghost which fills us with spirit and God's love for us. It is a given tool to be used in life. In times of goodness and times of bad or hardships.

Monday, March 16, 2015

Heaven Has a Place on Earth

As I have mentioned before.... God is there always. Our Savior, Jesus Christ is always there.... and something that took many years and hardships to learn. Or I should say realize our guardian angels are there too. When we need them most. They are a sweet comfort from Heaven. To ease a troubled heart ache. Like flowers that bloom in the spring and snow that falls in winter. They aren't always there but we know when the time is right... they will be there. I love and am very blessed to have such a support in this life. "Be strong and of a good courage" be the light in this world... if there isn't any create it. Call upon God he love you always forever, no matter what. When I found God... and his beautiful blessings... I found me. Hilary weeks has a beautiful song called I found me about that. Spread some love xoxo- Chelle
 I took this photo after reading my bible last night. I felt full of love and the spirit. Those are the best part of life!

Wednesday, March 11, 2015

Sickie Love

The past few days have been very heart wrenching for the Dysautonomia Community. I ask for prayers for the families involved... Tragically a Young Women Christina who had Dysautonomia took her life after the burdens of this illness just became too much for her. She left a note that stated she couldn't keep fighting. I understand. It is so difficult. It is known that chronic illnesses can cause higher risk of suicide. But I want to share a little story about this topic, I have had a million times when I have felt worthless from being ill. It takes everything you have and spins it around, flips it upside down, and just when you think it can't get any worse... it does. It is a lot physically to take and a ton to take on emotionally. Another thing that makes it hard for me is I did not choose this. None of us did. Being chronically ill chooses us. Our plans and goals for the future change and disappear with out our permission. We lack control of our lives as we once had and long for it constantly. It is hard. Period. No matter who you are. But please remember you are not alone no matter how alone you may feel or things may seem. Doctrine and covenants 84:88 "I will be on your right hand and on your left, and my spirit shall be in your hearts, and mine angels round about you, to bear you up." I know this is true and as I have learned from someone before, you think of that quote and know your savior is always there (even when you can't feel him) Those guardian angels are there. and think about this... how much room is left in between your right hand and your left hand? not very much at all now is there! He is there I promise! With my whole heart, The other day I had a chronically ill worthless moment. When I realize I am 22 years old living at home with Mom and Dad. No income. Zip. Zero I can't go to the store and buy something I need with my own anything. No vehicle. I an so un-independent. It really ate at me in that moment. Then the words crossed my mind. "You have great purpose" and it kept repeating. Every bad thought would end with a "You have great purpose." I do not know what that purpose is. I do not know when that great purpose is going to enter my life or how... but I have faith in my Heavenly Father and if he says it, it must be true! I have lost many friends to suicide and it is so heart wrenching. If you need help. Please do not be scared to get it. Do not be ashamed, We all fall. It's all about how we get back up. Keep fighting. Hang tough. Because I believe you can do it! and by it I mean anything. Let your potential glow! Christian "tina" I know you are in a better place now not suffering. I will continue to fight here for you! Dysautonomia is a beast and I will do my best to put it to rest. fly high angel xoxo-Chelle

Also we lost a beautiful sweet little girly at just 5 years old. Gastroparesis complications took her short life.
I ask to keep these families in your prayers <3
Also I have a sweet little angel in my family who is in need of healing prayers she is very very ill at this time and is in need of some extra prayers. Thank you-Chelle

Tuesday, March 10, 2015

Tired

Today I woke up at 7 a.m. (very proud of that) and went to an appointment, counseling. I feel this is very important for anyone with a chronic illness. Or anyone in general... no shame! Then went to sonic to get my cup of crushed ice, a delicacy now. Came home worked out yayy me! I think I am gaining strength however losing weight.... it's complicated being tube fed. Then I sat in the sunshine for my ten to fifteen minutes before I get a flare from it... but enough time for vitamin soaking. Then I slept all day (not on purpose) then went to the grocery store for a short trip with the mom. Back home on the couch. A very eventful day for me. Sad right? This is what chronically ill is.-Chelle

Sunday, March 8, 2015

Walking

Today I had an opportunity I don't normally have, to go for a walk. Mostly my weak body holds me back. Sometimes the weather... but when I am outside walking I feel alive again. I feel closer to God and that bright cheerful sunshine is a recognition of my Heavenly Father's love for me. Just as the sun rises daily I know God is there for me every single day. Just like the sun is there every single day. The fresh air fills my lungs and revives me full of goodness. The path I walk reassuring me that though I don't know where I am going. I am going somewhere. My purpose important, no one else can walk the path I take. That's when I know I am alive and most importantly going somewhere-Chelle

Here we go again.

I am writing this post holding back the pukies... it has been a bad gastroparesis day. I am definitely clinging to my Zofran today. I woke up several times last night... in pain...my feeds were too high. So back down AGAIN until went to measily ole 15Ml. An hour. Boo! Sometimes my feeding goal seems further and further away. I am feeling better... not better as an normal person would feel but I didn't sleep the whole day and I had some energies. I even went on a walk by myself high five! I bought me some handy dandy aquaphore for my feeding tube stoma... I will let you know what I think. No matter how bad today seems remind yourself there is a tomorrow waiting to happen. A whole new day where your dreams could come true xo-Chelle

Thursday, March 5, 2015

Showing The Tube, Why?

I don't know why I feel so strongly to share these pictures of my feeding tube but I feel it is important so people can learn. and the last thing I am is ashamed of it in anyway ... it is a new part of me and I am going to show it. Show it for me. Show it for others. Show it for knowledge. Show it for Gastroparesis. Show it for strength. Show it for other tubies out there. Show it for awareness. Feeding tubes exist.

before I get started I would like to touch on something that has been brought to my attention recently. "overweight" people can and do have feeding tubes too. In fact some are "overweight" due to malnutrition. A feeding tube isn't for the "skinny" it is for nutrition. In fact while attending Mayo Clinic I met a Friend while we were both going through the same test that day... That test was called a gastric emptying study... That is where they force you to eat (hahah at that point you typically can't eat) So the study is where you eat radio active food I had eggs and toast ugh. Then they take x rays I think it was the first hour then every two hours... or something like that. you have x rays all day.  I was soooo sick they also make you NOT take your regular medications. but this sweet lady who I felt for and she felt for me (it was a mutual suffering) we talked while we would briefly wait in the back waiting room for our next x ray. And it came to find out she had a condition called Crohn's disease. She told me she ate a handful of food everyday and that was literally all. I believed her right off the bat. She told me she had experienced some frustrating situations with being over weight and not able to eat. And she thought it is what caused her to gain the weight. I agree because your body will eventually freak out about not getting nutrition and go into storing mode... I don't know the outcome of her study but mine was slowed gastric emptying and that is gastroparesis so yeah. I will never forget that lady and her suffering I think at the time she suffered more then me and had such a harder time getting help because of people's excuse me but ignorant abilities to be cut and dry. Not everything is just plain and simple as it seems. I was wasting away daily so of course the doctors could see that I was loosing weight and not well. and there are a lot of sufferers out there so don't forget the world and people are not cookie cutters.

I guess I am sharing the final project... healing is healed.... swelling is down... however my nutrition needs to improve immensely! I was very sick and in pain all day. However feeling better tonight (knock on wood)  I highly recommend children's gummies multi vitamins to people with tummy issues. They are probably saving my hide right now! Still on 20 ml an hour of feeds. My goal rate again is 125ml an hour. phew it seems so far away. But I am no quitter. That you will not see. if you are interested in what this tube is sticking out of my stomach... This is called a peg jejunal/gastronomy feeding tube. I eat through it. There are 2 ports one goes into the jejunal (small intestine) and that is where my food goes. (so I don't vomit it up) and the G part is through the stomach. Now I vent through that. Venting is letting excess air that can get trapped in my tummy out. let me remind you I have this due to a paralyzed stomach. so slow gastric emptying can lead to air stuck in my stomach and that is very painful. and uncomfortable....it leads to a lot of bloating. I also while venting can suction out food. Say if I get sick from eating something I can just vent it out and not puke. (well sometimes I still puke and I can't get it all out but I wonder if it is the content of the food I ate) ...yes I can eat food and drink by mouth but it is never for sure that I can keep it down. and I can not eat enough to sustain proper nutrition leading to malnourishment. (not fun I am experiencing that with my feeding tubes currently because I am starting out. You have to build your way up) The tube is painless unless I sleep wrong, or it is yanked. Then it can hurt pretty good. I'm still climbing up that mountain-Chelle

Wednesday, March 4, 2015

A Snack on a Stick

I just hooked up to this concoction..(my grandma Sherron just called me, she warms my heart and cheers me up always. I love that lady!) Back to subject... This concoction is salt water & water diluted Pedialyte/dissolvable kids probiotics. For those of you who don't know, kids gummy chewable vitamins and kids probiotics are much easier to digest... especially the toddler staged foods. I have felt like a rag doll all day and was pretty blue. I am here to say... starving makes you depressed and being malnourished. I know this in general but I just lived it. Today me = rag doll and blue. Tonight me (after vitamins) much happier, clear minded. Some energy. Wow... need a science project idea ?lol. Now waiting to see if my concoction "on a Stick" A.K.A. iv pole... makes me feel even better. While I was putting all this together to "eat" I was thinking about how my iv pole is like a Stick...and I thought it said yet funny how my "food on a Stick" has changed. No corn dogs or fried foods here. But I can still eat a lollipop so ha! Gastroparesis I got one on you that time! My feeds where up to 20Ml an hour but last night went down to 15Ml an hour. Hoping to go back up tonight. I am getting like 4fluid oz. Of formula a day.. but it is in a high caloric form so that helps! Keep on keeping on! Xo-Chelle
Grouchy, tired, and sick. And slightly malnourished.
Refuse to loose.

Sunday, March 1, 2015

March is Endometriosis Awareness Month

Today Embarks another month of awareness for me. This month, Endometriosis. Endometriosis is where the lining of the uterus grow outside the uterus in the abdomen. This causes massive pain believe me... I've been there. I have been diagnosed with Endometriosis since age fifteen.  My only treatment option is surgical excision to remove the adhesions. This sucks! That means countless surgeries in the future. Surgery is the best option truly. And I am not alone 1 in 3 women in American have Endometriosis. 1 in 10 in the world. There is no cure.  The pain it causes is a catastrophic event. I have missed several school days. Events. Days. Life due to the pain. Before my last surgery with wonderful Dr. Nita Desai. I spent a month curled up on the floor in pain. I was having severe pelvic floor spasms. Which led to a trauma categorizing diagnosis and 2 1/2 yrs of physical therapy. I had dealt with agonizing symptoms for years when I found Dr. Desai. I highly recommend them at st. Joseph's hospital. they specialize in pelvic pain. https://www.dignityhealth.org/stjosephs/services/womens-health/pelvic-pain-and-gynecologic-surgery/meet-the-team/nita-desai Endometriosis is life changing and a leading cause of infertility. There is no cure and too many women are suffering. Time to break the silence.