No update January

I do not have an update. I am sick. It's bad. It's neurological. The only thing that helps is very high doses of steroids. Which means in the midst of Flu season, I have no immune system. We killed it off. So, I am currently awaiting my old neurologist to get my new records from the past 6 months. I highly beleive something has attacked my nervous system. I have autoimmunities. That going said means it could be something new or underlying everything that's wrong with me. My stomach shut down again. I've been trying to jump start it. Right now the main focuses are to start getting sleep, protection from germs, & finding answers to why I am sick. There are hard trialing times and there are very good happy times in life this week. I just keep waking up and telling myself it's a new day and I do the best I can with what God gave me. I don't have answers to these trials but I do know Heavenly Father has a plan for me. For us. One step at a time, one day at a time, we move forwards to find our ways back home. I simply am trusting God to shine light on why I know u can not see. I do find great comfort in my nice cleaned home tonight. Home is where there are no germs. Home is safe. A clean house is such a blessing and it gives me the most joy today. It's funny how the little things become so Important when we change our state of minds in life. The only thing that matters in this life is the Lord's errands, and becoming the best us we know how to be. That's where it is. Simple Christ like love. Hubs goes to work and We start or day when everyone ends theirs. I will keep all posted as I can. I have high hopes for a remissionative state again. I have to ask for help these days and it's been frusterating. So I am using that to fuel my fight.-Chelle 

Update

We are on are on some seriously high doses of steroids. I may have a non contagious chronic form of Menegitis. Not exactly sure but praying neurology gets back to me soon. I will be seen soon. We do know my brain is misfiring, my meninges are messed up, and I have some pretty bad stuff going on neurologically. I don't have any pinned down information to give anyone. So for now just prayers. One step at a time, we will figure this monster out. I am very susceptible to germs. So I ask if you have any please stay away. Meanwhile I'll be locked up in my house and sporting my medical face mask rocking the moon face. -Chelle 

The rain, the dog, & the Husband working the night shift

I got a whole 12 hours sleep last night!

Which brought ALL day smiles on my face. I have had aches and pains I didn't even know I've had, until they got better... I started steroids on top of immune suppressant therapy. At dose one, I went from seizure like activity, hallucinations, and so much more to asleep for 12 straight hours! The hubs couldn't even wake me.

Oh the help sleep gives a sick body. I am having serious issues with my immune system and brain. We found out in December that the doctors were not originally truthful. Half my dura is missing in my spine. That's not a leak or a tear, that's something wrong in my body. I have a high suspicion it's my immune system attacking my body. My fevers start and my brain literally goes on fire, along with my spine. It's painful and nothing gives me releif. I have the butterfly rash. Until last night when they put me on steroids. Steroids alway help but I do worry after 10 days when I stop, it will come back with a vengeance. Sleep and health has been such a blessing. I have had releif of symptoms highly but I am oh so sick still. But my heart is happy. I was so fatigued and I've literally have been so weak and sick I can't even take a shower all day or do literally anything. It's been a challenge to this newly wedded woman. I want to be better. I want things to be better again and I just know spiritually they will. So I try not to get upset that I was supposed to see neurologists months ago and I still can not even get an appointment scheduled. I have been looking into possible conditions that I very well may have. If I do I don't know what that means for my over all health. But we do know my body can go into a remissionative state and with prayers, faith, God, and a little moxy I will be healthy again one day. I don't know when and I don't know how but I just know. I've been impression many times. So if you're fighting what feels like an endless battle don't give up the big fight. God is with you and he knows you. He knows of your struggles. He had a plan for you that's eternal, and he won't ever give up on you. It's currently 6 in the morning. My husband came home an hour ago and my dog woke me up to go potty. By the time husband got settled for sleep and the dog peed, they are both sleeping... I'm awake in bed staring at the roof now lol (Sounds about right lol) So if I can't sleep I'll blog. That's what I used to often do is blog in the nights that I couldn't sleep from this beastly condition. I feel like my posts are scrambled eggs and all over the place. I know there are errors surely and I don't ever plan or proof read. I write from my heart what I feel impressioned by Hevaenly Father to write. Hoping somewhere out there someone sees this and it helps them some how some way. Trials in this life will surely come but they will eventually go. (As Elder Jeffery R. Holland has taught us many times thought his "like a broken vessel" talk. Sending my love and testimony that God is with you and heaven is cheering you on always. Love, Chelle 

Answered Prayers

I don't have a lot to medically update. I am only getting sicker with time. I do not currently have help medically. (I am on a very long wait list and that's the best I've been offered for now.) I know my body is attacking itself. Fevers. Fevers. Fevers. It's been rough. But I had to share this. I prayed last night deeply and like I said I am sick and struggling. I prayed this morning after I woke up in sheer panic. The reality that I am not only so sickly again, but I am more seriously sick then ever before. I simply asked God if he could hear me. I asked him if he could hear me to please let me know... And as a loving Heavenly Father does, he answered me. 

He hears me. My Facebook memories popped up as I flop around in bed trying to make a feeble attempt to sleep. It's late in the morning but I am really suffering from insomnia. As I flop around a measly few minutes after asking God if he could hear me. He let me know I am never alone. This exact song is also from my first true testimony that God was real. Many years ago I laid on the floor of my bedroom with a laptop playing YouTube while doing my homework. During this also rough and sick night, I was feeling alone. So I then asked God if he knew me and my struggles. And this very song "Never alone" started playing on my laptop for no reason outside of God definetly heard me. It was also the first time that I got to experience that Heaven was also here on earth, and angels do in fact round about us to bear us up.  He knows our  afflictions. That's the take home message storms will come, hearts will be afflicted, but our Heavenly Father has endless love for us. He will give us peace and perseverance, all we need to do is knock. He will never leave us alone -Chelle l

Rough night

It's been a rough night. My poor GI tract is so very unhappy. My emotions are high as I worry. As time and prayers have passed tonight. I realized through him I've always gotten through it. Why would it be any different this time? Of course two flecks of glitter on the floor ever so perfectly aligned. Angel dust. I did actually try to capture it but it disappeared in the few seconds. I guess my angels were to be seen only by my eyes for comfort. Come now fount of every blessing -Chelle 

A Post & A Virus

I do not have any major updates. Still playing the waiting game. I am on a cancelation list to see Speciality-Neurology for my Dysautonomia. (And possible new autoimmune issue.) Theu have me in a team that works together for Dysautonmia and the GI wants me back on IVIG. I stopped it after getting meningitis. I was sick as a dog at the time and had been sick all year. It clearly was not helping me. It was hendering  my if anything. Well, three months down the road. I am sicker then last year. We have thought it was just the leak. But we have new information. I have the GAD65 antibody. I tested for this in August when I was airvaced for aystemic meningitis, CFS leak, & brain bleed. My body is attacking itself and was at that time despite taking medication to weaken my immune system and using IVIG. They think I could have been on the wrong dose of IVIG. Also they stopped it because I had a migraine side effect. We are learning now that I have  a CFS leak so of course "migraines" existed often. I started leaking one month after starting IVIG. So we have some investigating to do. I am just taking it one step at a time. I'm hopeful they can get my Dysatuonomia into remission once again. Once my neuro issues are "fixed" my GI system that is fully paralyzed (we found out not only my stomach & small intestines where effected but my large intestine as well.) So I have Neurological Gastroparesis and when my neuro issues are better obviously my GI tract follows suit and starts functioning better. I still have to go out to LA to see one of the only CFS Neurosurgeons in the country. Praying he gets my massive leak cared for & can rule out any possible issues such as CCI or Chari malformation. They upped my nerve pain medication and that has really helped my brain and spine being on fire. Which helps me take less pain meds, which makes me super happy! I feel like I am literally falling apart but I have faith in God's plan for us. Trials make us stronger and smarter. God and my Angels are comforting me it seems constantly and I keep seeing messages to my prayers through the random quotes that hit directly as answers to my prayers. When we choose to pay attention it's amazing how much we can see from Heavenly Father. 

Also, 

I keep finding two flecks of glitter around my house and I know that's them letting me know they are still there. My marriage has consisted of pure chaos and the crazy that being so sick brings. But we still are happy and strong. When you find happiness and a full heart during the worst a of times, you have a winner. He can make me laugh at about anything and he is a good friend to have around to lift my spirits. It's in these moments I realize just how lucky I am. My hound dog, Wreck also. Keeps me in good company.

He lays with me on sick days and alerts Husband when he thinks I need help. We have this furry cute blanket and we all fight over who gets it (even though it's plenty big to share.) The dog seems to get it more then me or husband. Lol. I do unfortunetly have a virus of some kind. I'm locking myself in so not to spread germies to others. So we are chilling on the couch together while husband works his 8 days in a row. It's my turn to use the blanket when husband is working. Haha. (Don't mind my messy boxes. UPS brought my formula and feeding supplies. #tubielife!) I wish I had more to post but nothing new has happened this week and I'd like to keep it boring lol we need less crazy and more zen. Now I get to binge watch Gilmore Girls, my favorite! Hang tough & take care Lovies -Chelle