Thursday, September 27, 2018

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 

Monday, September 24, 2018

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 

Wednesday, September 19, 2018

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 

Monday, September 17, 2018

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 

Sunday, September 2, 2018

The Highs & Lows

Today I masked the huge task of putting my makeup on. I haven't probably worn makeup in a month. I feel like time stopped while I was in the hospital, but it only stopped for me. Lol. To my suprise nearly a month has gone by. It felt better to feel put together. The answer to how I am doing is, "I'm better but, not better." I had two more epidural blood patches after my hospital stay. This is where we learned for the first time that I have a herniated disc. (L1) The disc is the cause of the massive spinal fluid leak. Bed rest and epidural patches we hope and pray will aid my body to heal itself. The surgeon looked at my case while I was getting my 3rd & 4th patches, also my last. They will not do anymore because, it should heal. If it does not heal it will need the aid of surgery. Obviously, we don't want surgery. I have a month to heal and then we will start doing testing that poses risks for me upon surgery. We didn't know what caused the leak and were under the impression it was spontaneous. So though I was upset to learn I have a herniated disc, (that was a very abnormal case.) along with the leak... It kinda eased my mind to know something caused this horrific situation. I still am unsure how this possibly happened to me. I don't lift nor am I active. Then again when you get deconditioned you can get injured very easily. I'm a tiny girl so everything is heavy maybe somehow I lifted something and it injured me. I'll never know. The dog ran out of dog food and thankfully our sweet neighbors have taken care of feeding him their own dog food, and caring for him the whole three week I was gone. Such a blessing to me and my pup dog! So I got out of the house for the first time to buy dog food. I went to the store, pointed at the bag I wanted, grabbed some treats, checked out, and came home. Haha. I will admit having a fiancĂ© comes in handy. I don't have to lift anything. I get to point at it and walk away. Lol. Such a very short trip to the store can make you feel human again. The rain came in today and boy did I suffer with head pain. We pushed the wedding a month to November, We lost a month in the hospital so we need a little more time to put things together. There is lemonade. There is hope. A little bit of struggles, pain, and aches. Confusions at times, but hope nonetheless. I have a life to live and people to love. God has a plan for me and I will rest in him. One day it will all make perfect sense. -Chelle