Today I feel so blessed as I found some good news out. I have nicknamed my self "pop the pig" off the kid's game. These steroids make me retain water very badly, so far. My knees even swell up so badly I can't walk. I call myself "Rollie Pollie Oillie". Changing steroids will take time and the old steroids I was allergic to has to work its way out of my system still. It takes about 2 months or so. But the new steroids IV do help me feel better to the source of the issues. The rash is back and forth. I did get some sleep though. The miserable side effect  leg cramps finally slowed down for a night. I will be glad to continue to taper off all thee nasty steroids and hopefully it will put some life back into me. These things are harsh at these levels! Awaiting IVIG to be finished setting up. Then that's next is to get back on that. It does take 6-12 months to fully load into the system. I won't be on social media as much in general due to the struggles of treatment side effects and the condition itself. Some times I just can't and sometimes I can do certain tasks still. God has surrounded me with many great blessings and he continues to daily. I am a very lucky and blessed girl. We just have to keep walking though the storm. It will all clear up in time and what a beautiful thing that moment will be. Today I woke up earlier and I felt promoted to read my scriptures off my night stand. As I opened a random passage, this is what I found already highlighted. 

 

-THE ACTS 1:4-20. Isn't it amazing when we eat our vegetables of the faith and devour ourself in our savior's love just how much stronger we can feel in all of life's great challanges! It's a super fuel to the soul & I simply feel blessed. -Chelle.   

I have received so many tender mercies of direction, comfort, peace, and true Christ like love this week. It does my heart great good. Words can't even explain the pure love I feel from my Hevaenly father. 

❤️ Valentine's Day was lovely it was our first married Valentine's Day. Husband got me the cutest T-shirt that says " " & even COOLER! We got our cute little wedding pictures in. I felt like a princess! What a sweet day to receive our wedding photography! 

Updates: Today I feel so blessed & humbled as I found some good information that I've needed all along for medical care. (We) I beleive in "choosing that harder right then that easier left." And I think that's being tested and that is okay because I have the savior on my side. During my duration of steroids, I have nicknamed my self "pop the pig" off the kid's game. The steroids make my belly round and extremely distended  some days. These steroids make me retain water very badly. And I can't drink enough water these days. Lol. It's truly crazy! I can't stand it but I find myself laughing              well at my current situations. (Crying just gives us a headache now lol) My knees even swell up so badly I can't walk or even bend them at times. They can't even be touched in my many hours long (sometimes all night long)  screaming pain episodes. (That no medication or remedy has been effective or can make "better".) I call myself now: "Rollie Pollie Oillie". Changing steroids will take time and the old steroid (Decadron)  That I was allergic to has to work its way out of my system still. It takes about 2 months or so. Due to taking such high doses of steroids for a long time I have to taper down or it could kill me. So that is why I have not just stopped the nasty steroids. I can't. And I never was intended by my team to be put on them longer term or up them so much... But sometimes you have to take care of business. But we are in the process  of coming off of them. And that's a step forward! But the new steroids IV do help me feel better to the source of the issues. Plus, I am not putting a pill in my mouth many times a day that I am simply allergic to. The ugly bad painful rash is back and forth. I did get some sleep though!! Yayyy! My body lets me get a little sleep! (I slept on average 3 hours in 24hours since Chritsmas and the last three weeks I only could sleep 1 hour in a 24 hour period. I thought I was going to have a heart attack I would be so fatigued. The miserable side effect of Charly horses full leg cramps finally slowed down again for a night. Crossing fingers they never come back. I will be glad to continue to taper off all these  nasty steroids and hopefully it will put some life back into me. Now all the chronic fatigue has set in. These stinking steroids so high are harsh at these levels! Awaiting IVIG to be finished setting up. Then that's my next step. I'm getting  back on that. It does take 6-12 months to fully load into the system. I won't be on social media as much in general due to the struggles of treatment side effects and the condition itself. I am still on lockdown and can only leave my house for medical or to go to my Mom's. Still have full care givers. Still having episodes of non epileptic seizures. I still lock up and I have stroke mimicking like symptoms. That's why we did a hospital check. To make sure nothing dangerously obvious has happened to my brain. I just had a massive brain bleed, aystemic Menegitis, & a severe CFS leak just 6 months ago. The doctors and test did clear my that I had healed from all that. (Unless I still have a slow leak.) The tests they are looking at my immune system actually comes from that original airvac stay (August) and I should have been told months ago. My Neurlogist I've have seenfor years never got the results and he is the one who started down this road of testing for neurological autoimmune. Lately, My vision is doing very poorly and I am having big eye issue that are effecting me. It hurts the muscles in my eye to move my eyes around. I have new glasses and all. So we hope it's a part of this. My brain hasn't been on fire since IV steroids and that's a good feeling so far. This recovery is super tough and I was very warned how tough this would be. And there isn't going to be any really clear answers for quite a while. Plus I have other medical issues added to the mix. Sometimes, I just can't do basic daily things and sometimes I can do certain tasks still. But I am down pretty good these days. God has surrounded me with many great blessings and he continues to daily. I am a very lucky and blessed girl. We just have to keep walking though the storm. It will all clear up in time and what a beautiful thing that moment will be. After going through the past few weeks of being told I was crazy to not being crazy to the challenges this has brought me. I think often about the talk "like a broken vessel" Elder Jeffory Holland. https://www.lds.org/general-conference/2013/10/like-a-broken-vessel?lang=eng                

Another Mormon Message has came to mind several times and I beleive they could be of great comfort to all struggling to climb those mountains. https://www.mormonchannel.org/watch/series/mormon-messages/mountains-to-climb-2 

This is my scattered brain updates. I'm sorry if they are groggy or a little off but my brain is sick. There is oh so much more but I am taking it "one day at a time" like I've always done on here. One Blessed Girl! Gods been sending me messages via social media and the right moments. It's the little things. (And best of all I just finished IV therapy which made me extremely nauseated and sick. But I got to see snow! I love my snow! Even if it does hurt my bones today!! It's the little things in life, like beautiful snowflakes falling like feathers.) 

Lots of Love to all! -Chelle