Never loose your sparkle 2018

My spine may be leaking, my brain bleeding, and my heart full. I can't drive or take care of myself currently. I am on strict bed rest and when I went to the pharmacy with the Husband tonight, because I was bound to go stir crazy in this house... I stumbled like a drunk due to my spine leaking... And I got very stared at as if I were an alcoholic or something of sorts. But I kept going because well, when you get lemons you made lemonade! 

Something I have not been able to do for a long time is lift another sick person up. That's a big reason I haven't been blogging anymore. You see when I got sick, I was inspired by God to share my story. I wanted to help others with the gift Heavenly Father bestowed upon me, that trials are our biggest blessings in this lifetime. That's something my heart firmly believes in to this day. Hard times come but they come for a reason to stretch us further then we could have ever done on our own through God. That's what life is all about, getting our bodies, learning the things we need to go onto our next life, our eternal life, in Heaven. This is what brought me comfort was my faith in God and God's timing. I always knew in my heart there was a fire that burned to help light other's facing hardship. I simply prayed and followed what God put in my heart. As I went into partial remission in 2016, it got substantially harder to feelconnected to  the chronically sick. (I was not cured and still had many of my own health issues.) I did not understand why it was SO hard for me to share my story and my knoweldge and faith in God and his plan for us all. I think I was trying too hard and when I couldn't just make it happen easily, I took a step backwards. Because, everything I've ever done regarding this blog, has been in my heart. So, I decided to pray about it. God told me it was okay to stop blogging. He told me I had helped more then I could ever imagine. And it hurt my heart a bit to stop but, I knew at the time I needed to do Chelle time. And honestly, I am glad I did. I lived and experienced things that I needed to during that time in my life to get me to the next phase of life. Of course during that time, there were definite trials and conflictions in my heart that I wasn't doing enough in my power to help others. And I would try but I just didn't have the answers and the comfortable knowledge within me. Kinda as if I lost my spark. Writing became  extremely hard and I literally would just sit here and stare with writers block. I never plan a post and I never had an issue. That's why this blog is a hot mess. It was straight from the heart and published. Easy peasy. But tonight after enduring a hard month of pain and suffering, my heart felt that spark! And I was brave enough to reach out to a fellow spoonie. I gave my heart felt testimony that we are SO much more then our bodies and each and everyone of us is oh so precious! We each have a plan Enternal and God's love for us never fails. Trials are life's biggest blessings but not to be confused that a trials do in fact hurt and weighs  heavy mentally and physically too often. But God has given me this platform in this life. I was a very sick disabled girl who functioned highly and fell straight on her face at 18 years old. I required lots of care and I almost died many times. Most of these times, I didn't even have a proper diagnosis, and I'd bounce around from different specialists begging for help. You all know my stomach paralyzed from my neurological disorder "Dysautonomia" and I lived through feeding tubes and central lines. Then I got better and ate by mouth. I also have found the one whom my soul loves and I get to tell others.. I did not think anyone would ever want to marry me or love me. I was too sick. But here I am eating and married. If it can happen to me it can happen to anyone! Being sick hurts but you are still you inside. God is going to work through you. My work has to be with being ill and trying to find the precious inspiration in the mess of that. Because giving up hope is never an option. God will always be there for you! No matter how little or strong you think you are. He is there letting us learn and grow into the divine eternal beings we are. So we can come home to him again perfectly. Do not let your trial ruin you for it is the beauty of faith that builds you up. You are stronger then you believe! We humans can do anything through God and his ever-loving faith. Broken my body may be, but my soul is full of gratitude and thanksgiving for the simplicity of happiness life truly brings. Hug your loved ones extra tight, dance in the rain, smile through the pain, and never loose  your hope and your divine sparkle! (I am back!!)  -Chelle 

November Blues?

I have not known where to pick up my blog. I have had a sick brain and that totally disturbed my writing. Simple tasks became hard. I guess I'll just do a time line of what has been going on the last few months. This way everyone is caught up. I was in the hospital for several weeks Then once out I had to stay in the valley. I could not travel due to the altitude change. It posed a huge risk to my brain. So, once I was out of hospital I stayed in the valley and I was on bed rest the whole time. It got to the point where they told me, you're so sick this is just the way it's gonna be. There isn't enough medication to safely manage this pain. So I waited and about a week out of hospital they did another blood patch. Blood patch #3, and #4. They really went to town with these patches and patched my whole mid back down. This process  helped significantly! I was better from that point. (Well I had to recover but the issues and head pain.) We did a the myleogram later even thought the risks of causing a leak were high. They needed a map to see where things say. Well they way well because in this particular test it didn't show anything active. When I had this myleogram, I personally think it caused me a small leak becaus, I was never the same after this very test... So I was sent to neurology for further care. I've been waiting on this process.

Mean time I was beautifully blessed with a wonderful, perfect wedding day! It was hard getting there! There was definite sucking it up and pushing through days but I got there! It was worth every single thing!! It was perfect. The weather was good for a fall November day! It didn't rain or snow! (My worries because we had to push the wedding date out because I was so sick.) I felt good during the wedding and reception!! I know Heavenly Father was behind this blessing. And now I'm happily married to my best friend 💕 We do intend to be sealed in the temple on our anniversary.(I would like to add, never give up HOPE! If you are sick and you think you'll never get married because of it... Stop! I was there. I wouldn't even date for years due to believing I wasn't ever going to be enough to be loved. Or I was too sick for marriage... No you are always enough and the right person won't care about it! So keep dreaming!!) I've just been busy turning my house into a home. We have been very blessed with gifts and are oh so thankful! But I have to admit there was a day when I was tired of opening boxes and cleaning things to cook or eat. Haha! It was Christmas in the G home for a month but my heart is in love with having my own kitchen to cook in. I don't know why there has always been something spiritual about cooking in the kitchen on a icky day and listening to Hilary Weeks or hymns.

Unfortunately, I have been down the past two weeks. (But don't worry my floors are still clean thanks to this beautiful blessing! With my back issues and health issues we felt it was a very worth getting!) One day I simply dropped something and bent over to pick it up. I blew my blood patch. The only way I can describe this feeling is to put a water ballon next to your spine and pop it. My spine is still leaking. I immediately contacted the Blood Patch doctors. They needed neurology to do an order for a blood patch. But Neurology deemed me "too complex  patient" (because of my Dysautonomia  and other medical conditions) and thought that being in bed, in pain, on pain meds, and having neurological side effects for the next two and a half weeks would be better for me. So I have an appointment this coming Monday. I pray the doctors can squeeze me in for a blood patch! If I don't end up in the hospital sooner. I have only progressed downhill fast. I started hearing voices, and I hallucinated two nights in a row. My vision is messed up, my speech is all over the place. My blood pressure is high again.  I have the same stroke face and I have those episodes of seizures again. It's honestly gotten scary again for me. I don't know when to take myself into the ER. Last time I had  aystemic meningitis, bleeding brain, and CFS leak. So I don't know what symptom came from which problem. They told me yesterday they thought my brain currently is bleeding with the newer symptoms and my history. So I currently have a treatable Spinal fluid leak that is beating up my brain and possibly making it bleed.
How do I get through this stuff? I pray often, hard, and a lot. That's the only thing that gets me through these crazy challenging times. No matter what's going wrong in your life or how scared you are, pray. Cling to Heavenly Father and I promise he will always be there to help comfort you! It doesn't mean the trial will leave, but easiness can take place as well as healing of the mind and body. I don't know how I got SO sick but I do know my Heavenly Father loves me and can heal me. I have felt angels around me on very dark nights. I know D&C 74: 88

"And whoso receiveth you, I will be also, for I will go before your face. I will be in 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."   This very scripture quote has been my glue through every single crazy thing I've stumbled through. That's why I repeatedly share it. I know it's truths. I've witnessed it too many times. I'm not going I let this pain win. I'm not going to let my mind play tricks on me of self doubt.  I currently can't drive a car or do anything out of the house alone. I think loosing that independence has been the very hardest soul crushing part. The longing for normality and the frusterations of " I can't".  I do not know why this is happening now or why Husband has to go through this great trial with me. Especially so early in our marriage. But I know our engagement was full of trials too. They brought us closer. We both learned things and I believe that's what trials are truly about. Learning to dance in the rain, even if you're in pain. So, I'm frightened again but I know things will be what's meant to be. I'll get me feet back underneath me again. Hopefully soon this will be behind us. In the meantime, Prayers -Chelle  My best friend works hard to make me laugh and we find ways to have fun even when you're stuck in bed or on a couch! Our first Christmas tree and our cute couples onsies. They match too! This man puts up with a lot of me!

Who is Healing Me?

My body is on fire. My bones burn non stop. I feel weak and tired. I keep pushing through the pain in faith that my Heavenly Father can not only heal me but lift me up through the struggles of rehabilitation. I want to do more. I want to be better. I have faith again restored that I will be whole again someday. I have faith that these earthly trials concerning my health will one day deminishe. He is healing my heart and my body one piece at a time, one day at a time. I can feel it in my soul. -Chelle 

Celery Saga of 18

This is my "what did I do?" nausea face... Ugh! 

You guys! I ate a whole salad the other night at dinner! Now hold on, the salad bar came with the meal... So I originally got it to take it home for someone else to eat. (Why waste? Right?) well... I got brave and I was like this looks tempting. I've been eating extremely well lately. So, I caved. I started and I couldn't stop. Vegetables are delicious!! Especially when you have not had them in years! With croutons and dressing! Mmmh! I was literally in cloud 9, and I was so proud on myself. I was like well... Cool... I can eat salad now. (But I probably shouldn't regularly.) well yesterday I was cleaning out the crisper and the celery was on its last days. So I washed, cut it up, threw oh the bad parts. I ate some and threw peanut butter on it. It was also scrumptious! So I was waiting to get sick after my snack. Nope. Handled it like a champ. Today I had celery and peanut butter again. However, this time went as previously would have planned. To my suprise on day three I got very sick. Now I'm laying waiting on the nausea meds to absorb. I feel my super powers leaving me. (Wink wink lol) The other days of eating vegetables have caught up to me and have been a rapid reminder that yes, my stomach is paralyzed and I can't break down veggies no matter how much I want to. Some days it's a hard pill to swallow. And the funny part is I get told often how lovely it must be to not be able to eat. I can eat, What I can't do is digest food. I still crave and want to eat... It's a struggle alone. long story short is, if you have a functioning GI. Love it! Care well for it! And from the girl who can't eat vegetables, eat them!! They are good for you! I felt very healthy during the times I did well with them. It was fuel and it made me feel well. Back to the formula for nutrients. You don't fail unless you quit trying -Chelle 

Engagement Photos & life's trials

Sometimes you just have to make yourself push through hard times. And I've had to do this lately. I have a wedding coming up and things to do. In fact I had engagement photos a few days ago.

(This one is my favorite one, it wasn't posed and it simply captured a moment in time. I was getting worn out at this point. He is my safe haven, always there for me. This is how our relationship is. I'll let the picture say it...)

Backpack of medical supplies in tow. I did surprisingly really well. I know Heavenly Father lifted my physical burdens and allowed me to enjoy these precious moments in my life. I was extremely fatigued afterward. So I came home and layed on the couch while my sweetest finace ever, went to the grocery store for ingredients to the turkey wraps I wanted. Came home and prepared it for me! (He even looked up a recipe to make them like Costco's wraps.) He is truly so sweet and good to me. He in so many ways a huge blessing in my life. (And not because he cooks or feeds me. Lol) He is my best friend. I did get to speak to my Doctor and He decided in order to continue treatment, a myleogram was needed. They did not do this specific test in patient due to the severe risks it poses to me. It's been too long, even with my breaking a blood patch, I need more help. The leak could be in other areas and we aren't even attempting to patch in these areas for all we know. This test will give us a full view of what's going on. That way we can discuss treatment options of more patches or, if the patches aren't working and surgical repair is now necessary. I pray I will not need surgical intervention. I have so many health conditions that aren't well understood. Any bodily trauma as this broken record repeats, can cause the course of disease to change negatively. This can be permanent. I don't know why I'm being so trialed. Our engagement has been fully trialed in many ways. Life simply got crazy the second we got engaged. So many things have happened that no one could have known not prepared for. But we both have faith in God's  plan for us. We know that the lord does provide and guide us down the path we need to be on. Being chronically ill will always pose trials of it's own and we only have faith that it will build us stronger by teaching is lessons about life and Enternal preparedness. So we leap in faith that marriage is between one man and one woman. We have faith in our new family. Trials and tests are all a part of our eternal plan. Trials are a part of life and will be apart of our marriage as it is for all. Surgeries and struggles stink but, we know that big life events aren't easy or for the faint of heart here on Earth. We typically don't ask for trials here on Earth we tend to try to avoid them but it is when we fully embrace them we become the people the lord wants us to be, using our full potential. So my heart will weigh   heavy at times. My pain may soar, but I will be embraced by the love of God and with him we can do all things. I am simply lucky enough to have a loving partner and a best friend in this life to go through the good and the bad times with me and for that I am the luckiest girl on the planet. The rest will follow with time and be what it will be -Chelle 

I broke my blood patch

I've undergone 4 epidural blood patches now, for a spinal fluid leak. Patch one did not do anything. Patch two helped. Patch three and four done at the same time, helped massively. Well, until I sat in a recliner sideways to keep my feet up and off the furniture. (I'm a POTSie we like to keep our feet in the air.) well, it was a very brief sit-down as I heard what sounded like fabric tearing. I looked over my out fit.. It was good. I did however notice a cold feeling straigh across my spine where my leak begins. I didn't panic and told myself it was ok. I would be fine, I was just nervous and over reacting. By the next day I was back to massive pain accompanied by massive symptoms. The pain in the head is doing better, the symptoms are not. I have severe brain fog, memories issues, I talk funny...( I kinda will add different accents to my sentences), also I say the wrong words and flip my words backwards, I have had some facial tremmors, I have had severe hunger, pressure in eyes and neck, neck burning, my eyes for me are harder to control in movement, I kinda get pale and grey looking at times, I have nausea.  Its truly a lot of symptoms. Obviously some are more severe then others but I fee the worst oven ever felt in my life. The mental tol this takes to lay flat all day everyday is so draining. Then the mental end that this physically causes... Spinal fluid leaks mess with your moods, they can and often cause depression. So to add these things on top of a already mentally draining situation... This is what makes it so hard! The epidural blood patches, the worry, the seriousness of it all. The doctor has sent myleogram testing orders to be done. This is the test they did not do, due to the severe risks it poses on me. This is step one for surgery. I don't feel the nurse is listening to me. The patch worked I just messed it up. The Doctors are going off chart notes. I'm praying one will call me. I've been trying to get one to all week. I feel nurse blocked. But I know she is just telling them that the patch didn't work. She even kept telling me a different version then the one I was telling. I'm down. I'm down big time. I need all the prayers I can possibly get. Heaven is the only way I can get the through this devistating time. I am heart sick. Lots of love -Chelle 

Particularly feeling

I don't particularly feel like writing today. I'm feeling defeated and I typically hide these emotions from here. I have a feeling once I start writing this, I'll feel better! That's usually the case.  I am a huge believer of hope and making lemonade out of lemons. I know that our Heavenly Father has given us each a plan. I know to endure, until the clouds lift and the sun comes out once again. That's the thing about bad times, the sun eventually always shines again after the storm passes. Some storms are short, and some storms last weeks. Sometimes the storm even blinds our vision as to what's ahead. This is where we learn to be strong and trust in Heavenly Father. We go through storms hand in hand with him, faithfully walking blindly, knowing what comes our way is meant to be. The storm will eventually clear and vision will be regained. I could feel the clouds lifting last week and this weekend another unseen storm rolled in. Prayers are appreciated as always.  (I've gone a bit backwards with my CFS leak) I've decided to do bed-rest for the next few days. It seems that I blew my blood patch. I was finally feeling some what human and seeing the light at the end of the tunnel. I sat in the recliner sideways (I'm petite), to keep my shoes off the furniture. I mean after all I was not raised in a barn! Lol. This left my spine in a "C" position. I wasn't even thinking when I did this... Until it was too late. While I sat there very briefly, I heard a noise comparable to fabric ripping. I checked my clothes. (Especially since I've gained some stress weight through this traumatic recovery process.) However with the noise I felt a spot in my back where my leak starts feel cold. Other CFS leak symptoms proceeded to come back. About 24 hours past this I was in bed miserable with positional headache (or what I call the headache a normal person has never had! It's way worse and intense, you can feel every blood vessel in your brain (the pressure is so severe, I actually get anxious that my brain will explode.), nausea, severe pressure behind both eyes, face neuropathy, stroke face, taking weird, burning neck, unsteady hands, wonky vitals. Pain in head upon changing positions. Like laying down helps... But sometimes for me standing helps, and if I stand the movement of the standing up from being down will make my head throb so bad. Or vice verses I will be up and not feeling well, in need to lay down. So the movement of standing to sitting even is horrific head pain. These CFS Leak symptoms are so very specific now. I recognize them. Another person with these has advised me that total bed rest for 3 days can allow the blown blood patch to reseal. The good news also is the patch obviously took or I wouldn't be experiencing this hard stuff again upon breaking the seal. (Obviously have a call into the doc. But it was weekend. I am not jinxing anything but, it didn't hurt me to do bed-rest. Well maybe it broke my stubborn pride...lol!) This has been so rough mentally. The second I thought life was coming back to me again, it was yanked from me, again. Over sitting in a chair wrong!! I'm struggling mentally from the trauma of the whole situation. The thing I never wanted to happen. Happened. It wasn't just POTS... Something was seriously wrong with me and I couldn't get proper help despite having a whole team of specialists. The one specialist who should have caught this sooner, before it became so severe... Ignored me. This should have been caught months ago, not when it was so severe my life was endangered. I could have died. Those emotions come in waves. I've chosen to move forwards and not focus on this. The trauma will go away with time. I put my focus to healing, and my new group of helpers (specialist). They took me on when they didn't have to. For that I'm thankful. I like to look at  the positives and try to forget the negatives. I am still human and the negatives come up, but I try to not let them consume me fully. Time keeps ticking and I keep trying my best. Last week I had a decent day and finally got dressed like a person. I know sick people talk of this topic often... We may look incredibly healthy, & happy. It looks like we must be cured or not in need of help. I'm going to use last week's selfie for example. 

I know I look well here, I feel happy in this out cure because it was the first time I had worn makeup in over a month. My souls was happy this day. This helped me persevere to get dressed and curl my hair. Because those things to me make me feel alive. It's soul food. I have to embrace these moments, for I miss too many not to embrace them all!! 

But what you don't see in this photo is....

the breaks I took getting ready.  That all I did this day was just that get ready and take a few selfies in my yard, and returned to bed. That I was tired for the day simply from getting makeup on and curling my hair. That despite looking well I'm chronically sick with several conditions and I recently almost died. I have a spine injury and it's very severe. I may need surgery soon to fix it. I am recovering from a bad brain bleed, meningitis, and a CFS leak. A three week hospital stay that has left me with full body de-conditioning. The amounts of pain killers and other medication cocktails taken, for me to be able to even do this. All I did was get ready for the day and stand in my yard taking selfies. (Is that super well?) I am just trying to enjoy my good moment on these days.. And it's not about getting likes on social media... Its fuel to my soul, allowing myself to feel as normal as possible, feeling happiness for a short moment in the depths of despair, allowing myself to come up for air because I'm being water boarded. It's  the message that I'm still trying despite all the things I've been going through. I full heartedly believe in fueling your soul. When God gives you a window open it up and enjoy the fresh-air  breeze. I believe in hope in hopeless situations. I believe in smiles and letting your happy soul shine out of your eyes to the world. I believe in being an example to others, that hard times do not have to win. "Don't you quit. You keep walking. You keep trying there is help and happiness ahead. Some blessings come soon, some come late, and some don't come until heaven. But for those who embrace the gospel of Jesus Christ, they come. It will be alright in the end. Trust in God and believe I good things to come." -Jeffery R. Holland. This quote is perfect from one of many favorite talks. I just love Elder Holland. His talks come very personal with me and they help hold me up when the storms roll in.) I am sick.  I am feeling broken and bruised, but my spirit is in tow. And I know I have the help of my Heavenly Father every single day. He gives me what I need and helps me move along. Hand in hand. He has blessed me with angels here on Earth to catch me when I'm down, and to hold me up when I'm too weak to stand, the love is endless. There isn't a burned that can't be lifted with lots of love. Be kind to all. Love one another, & simply do your best. Don't measure your best efforts to any others. Just you and focus on your goals, where you want to go or do in this life. You may be limited at times in this life, but you're not limitless. -Chelle