Comatose?

I wore a bathing suit. With Cushing's syndrome. Courage my friends. Courage. 

After plasma exchange in July, I had a few golden days. It cleared up the dangerous symptoms and I started thriving it seemed. Then I started sleeping all the time. Usually I can't sleep. Things just weren't bright anymore. And not depression, this was different. Turns out not to be scary but since my body almost went into a coma it has decided it likes the comatose world. So neurologist was treating me out of comatose world with a medication to waken me. I had to wean up it and some how I accidentally moved it out of my system. (By error). I have a very serious medication system and I removed the medication at some point a few weeks ago. I don't know when. I have no memory of it. And I didn't even realize I was missing it. Scary, my memory is these days. It seems every other word out of my mouth is incorrect too. Brain injuries simply suck. I feel incredibly stupid these days. God humbles me that's for sure. I thought I must not need the medication somce.i didn't notice it was gone...  but my mom thought maybe we should give it a try since lately I'm sleeping through my life. Which was seemingly ruining everything and taking my spark away for life. So we started it and it immediately helped.
I still have a ways to go but the last few days I feel like me again. Just a few days ago I was fully crushed wondering if I would ever feel good again.... if I'd ever feel like me again... I prayed long and hard and woke up from a nap realizing I was no longer taking a medication I apparently need... I felt guilty and ashamed for making such a mistake. I don't know that regularly people know how much work truly goes into 11 chronic illnesses. I'm human and things will happen. It's a lot to manage.  I'm still tired but my family has gotten me through the week and I got to live a little today at the lake with husband.

Things simply aren't the same but I am still me. That's hard to remember these days but I know God has a plan out there for me. I don't know what it is but he does. I have been praying not to run from pain and to embrace it. Less fear of the unknown more faith. I'm full of gratitude for the olive branch I received today. That's what today was an olive branch. Thanks Heavenly Father. Love, -Chelle
P.S my hair isn't falling out after months of falling out in clumps and is growing new baby hairs..I'm ecstatic!

Should update

I haven't posted in a bit and decided I should probabaly do an update. Things went up after my plasma exchange and then idk if my endometriosis knocked me down or what but I went from dancing around for the first time in a year to back in bed most days. I want to ephacise I am SO much better still! I really am basically just worn out and I keep getting headaches that we've always blamed on the IVIG. (Now my brain is not on fire the tall tale symptom of my autoimmune encephalitis.) Idk why I'm getting bad headaches. When you have 11 chronic conditions it gets a little blurry. So we have proceeded with IVIG ahaim.after a 3 week break. It was super rough on me. I got the side effects. We think its because when they do a plasma exchange they remove all your antibodies and IVIG floods you with donors antibodies... therefore it was like my first dose of ivig all over again. But my sweet hubby took good care of me the whole time. He made me soup and when I felt a but better later some popcorn with lots or butter and salt. To soak up that big IV I get lol.

He has been so helpful this past month with helping and

cooking dinners when I can't. Thankfully he knows how to dance in the rain. It is in some of the worst moments that he makes me laugh somehow and I realize we really were made for each other. I truly love him. He is my best friend and makes life worth living.
If things don't improve rapidly with this body of mine we will go back to the drawing board and tweak.

Today I'm putting my new feeding tube in and I'm so relieved my old one is so icky and I always worry it will fall out because its flat worn out.

Tummy isn't as happy these days. Gastroparesis is more obvious.  I am really focused on better nutrition and I am doing a lot of liquid meal replacments. You know my favorite all organic healing (not a bunch of chemicals) meal replacement drink is Orgain. GPers I have had a lot of the meal supplements and orgain doesn't make me sicker it makes me heal. Its at Walmart in the food section. I seemed to developed a small bowel blockage. We did find out in December, not only are my small Intestines and stomach paralyzed, but my bowels are as well. (This is why you do a full gastric emptying study if you're getting a GES do at least a 12 hour. You want to get a full picture of what's going on. It's all connected. You wouldn't go to the eye doctor and do an eye exam and glasses on just one eye. This is good info because now I know I am at risk for bowel obstructions and blocks so I can try avoid them with treatments and diets.)

 I am weaning off some of the meds my brain needed after all.the trauma earlier this year and time is going by... and I'm happy to announce that for the 1st time since steroids I have lost weight on the scale! My hair quit falling out in clumps. All this past week. It's so relieving! They told me I have as a result of heavy steroid use, that I have Cushings Syndrome for at least the next 9 months. Its been so hard mentally. I just morphed into a whole different person within two weeks. I'll keep those photos to myself for personal reasons but it is truly unbelievable what steroids can do to a body. I follow the truth 369 an awareness for childhood cancer. I don't know why besides I know how important awareness is... not just for things I have but for all things especially childhood ones! over the years I've seen photos of sweet little looking so puffy from the steroids and I now know how miserable it is and my heart just aches more for these babes! I pray hard for them all! If there is anything I've learned this year is never judge someone else for anything. We simply don't know what or why someone is in a circumstance they may be in. There is so much we doing know. We should merely walk in Christ's love. It's hard I know when you're busy out and about and people can be cranky or rude.... but don't let someone else negative take away your bright and goodness. I'm talking to myself when I say this but we should all strive to soften our hearts in today's horrid world we live. That's what this blog is it's notall awareness and updates. It is about spreading light in a dark world. The only light of our heavenly father. Its contagious.  Just keep doing the best you can do and know ththe savior will walk  besides you.-Chelle

I let my illnesses bully me.

Today it hit me. I've gotten to the point to where I felt decent wearing makeup. (After a battle with steroid induced acne that was horrific. Makeup was even too painful to apply, even if I had wanted to.)  To realize I still don't feel good about myself. Makeup used to be my armour. Something I enjoyed on a sick day. A coping mechanism because, I looked well on the outside and I could pretend I was fine on the inside.

Well the insides won this time. I don't know how. I have NEVER let my health beat me down. It ravished me this year more then most people are aware. It's no secret I almost died and the treatments where rough to me. But for months I couldn't leave my house. I cried every time I looked in the mirror as the steroids and I mean massive amounts of steroids for months that almost killed me alone. That stopped my immune system and pushed my little body beyond belief.

These steroids changed me. At one point I was not recognizable to my home health nurse outside of my voice. I don't think I'll ever be the same. The weight gain, now the zillion stretch marks, the acne, now losing my hair. BUT I am alive. I am here & though I wasn't always happy, I'm happy. It hurt in unphathomable ways. But I did it. But it bullied me. Being sick and these treatments locked me up in my house.I hid from literally the world. And I just realized that as now I can put my makeup on after relearning how to do it with the brain issues. Now I feel ugly because I feel bald, though I'm not completely. Plus my hair that's left is just fuzziness. But I'm still me. And I was thinking today, "what's the point in putting on makeup? It doesn't matter. It won't matter for months or another year when I feel normal again." And that's when I realized I let my illnesses bully me.

                           

 I let the weight gain, the pain, the hair loss, speech issues, and feeling like a total dummy when I can't comprehend the simplest thing bully me. No. This isn't going to be. Not anymore. I embrace the flaws of illness. I will make lemons out of lemonade and I will fight this because I am STILL ME. No matter how different I feel. So I pulled out the makeup and put on a what turned out to be ugly PURPLE wig. But I laughed and the smile was priceless. Don't give up enduring any trial no matter how hopeless it seems. No matter how dull your light seems. Keep going because I promise God is with you and he is there even if we aren't. And there is always light at the end of the tunnel. And you will be blessed for the trials you face in this lifetime certainly fly in the other side of the veil to heaven. Pray often. I promise. God let me sincerely smile tonight and enjoy my makeup. I ultimately felt alive for the first time this year and I am blessed. It may seems small but it is oh so the big picture-Chelle

Medical care in America?

Its amazing what the right treatments can do.

I haven't had symptoms since getting my first round of plasma exchange. Which is what it's supposed to do. They will remove.my line this week. It hurts pretty bad so I am happy it will be removed. Thought I know that will hurt too. Then we will continue with IVIG and hopefully be in the clear forever. You can tell I'm doing better because I finallly put makeup on and did my what's left of fuzzy hair. Treatments have not been nice to my hair this year. That's been harder to deal with then I thought. I've considered a wig but then I just am like oh its not that bad. I feel homely though. I have 9 months left of hair loss, weight gain, and stretch marks to go. They told me from the heavy and long steroid use it would take a full year for the nasty side effects to go away. It's been three months. The acne is finally starting to go away. I am glad they saved me but the side effects have been simply terrible on me. That's why we are taking alternative and better treatment approaches. God has been good to me and I'm thankful for good doctors that try their best by me. I'm thankful for these treatments though they are a trial themselves.
I currently don't have a Primary care provider due to being "too complex" the company decided they will not treat me since my regular doctor left and literally left 4 of us "complex patients" on the streets to vend for ourselves. Leaving it all in my lap to find a way to obtain my meds and regular care. I have to restart and find a new doctor and the earliest they will get us in is a month. So for a month of going through heck itself I have no help at home. Our medical care is oh so lacking. It is sad to see others suffer because we are the sickest. Its pure laziness on the medical end. No one wants to be bothered by us and they don't care if we pay that price or even die over it. It's wrong. It needs to be changed. And I plan to work towards fighting the fight for others when I get on my feet. I will continue to advocate. Patients deserve rights to actual care.
 I was sent home to die in January when I could have had a simple dose of IVIG that would have and did eventually at home months later save my life. My neuro had no hospital rights at that time and begged the neurologists at a huge hospital in the city to just try one dose. But they instead told him, " no. We know she is sick and dying but we don't want to deal with her." On the other side I was being told, "you're crazy and you're family is letting you be." (That was after they accused my husband of abusing me. Because why else would a disabled female get sicker? Funny they dropped those accusations when they found out his occupation.) Bottome line is corparate care is not about caring for sick people. It's about making money and the two do not combine and work. Doctprs hand ate being tied. It's not always their faults, I should add. As the patient I can vogue years of these experiences. Paying the price of no care when I deserved better. Chronically-ill patients across the country  are struggling. I talk to them and hear their stories. It's not just me or bad luck. It is not a one time oops. Its turning a blind eye because that's the easy way out. Its knowingly harming patients. Some times on purpose. And a lawsuit isn't going to fix it. It is much bigger then that. I won't give up even when I'm given up on consistently. But things really need to change before more innocent lives are hurt and lost. I pray and hope for better care one day soon. -Chelle

Round two 🥊

It's the second round of plasmapheresis. I'm currently hooked up to this machine that's taking my bad antibodies out of my system. Bye felicia!

Today seems much better then Monday coming straight out of surgery to the plasma exchange.  My dialysis catheder is sore but continually feeling better. I still can't move my neck. I have a small incision  in my neck from placement.

But I can say after my first round of this plasmapheresis I felt so much better! My brain no longer has felt on fire and seems less inflamed. No more seizures or hallucinations. No more flu like symptoms. I'm so much brighter and happier. It was messing with.my brain so badly. Life is better. Which is exactly what this whole ordeal is all about is putting this nasty autoimmune encephalitis in its place. I don't want to get too excited but I think I feel better then even when I started IVIG. So I may have been needing this kick in the pants all along. It gives me lots of hope. Never give up hope. I feel very blessed beyond words today -Chelle

It's 3:37am

It's 3:37am. And I am pretty positive I am flaring with my autoimmune encephalitis. Which is extremely scary. I trust in Heavenly Father's plan for me, and I know I am doing the best I can with the circumstances at hand. But I really don't want to go back on really tough treatments. I'm still not over the last round. And I am sitting here with insomnia, worrying myself sick. And then God talks and I start thinking about Emma Smith & all the trials she faced in faith. And that made me think that my mindset must be off somehow. I needed to do some digging. So I started searching for Emma Smith history because that's what popped into my head. And somehow I found this podcast. Which is not Emma's Smith history at all but that's what led me to this... .

(I am now a subscriber. She seems pretty amazing!) 

I think it's exactly what I needed to hear. Ugh this circumstance stinks but is it worth it? Yes, I would say Living is worth it. Hills and valleys. She brought up everything I already knew... That worrying isn't going to change my having autoimmune Encephalitiis among ten other chronic illnesses. I want to be well but I simply can't wish myself well. I definetly can't worry myself well. God has plans. God talks. God directs. If we listen to the still smal voice. I prayed last night to be guided in faith by that still small voice and that I'd follow if he would give me comfort and peace. He comes through when we need it most and we are Indefinetly never alone. Pray he is there. Speak he is listening. You are his child. His faith now surrounds you. -Chelle

July

The 4th was fun! We made more memories.

 Love Birds... Is it even the Fourth of July if you don't eat a hotdog?!

As life goes on this blogging thing keeps getting harder. I don't know, maybe that's the way it's supposed to be. It's funny how time passes by so quickly when you're  doing better and so slowly when you're healing. Looking out the window watching life pass you by, wondering if you have much time left on this very earth yourself. Then you heal and blessedly overcome it and hit the "weird-patch" of recovery. Where  you're not quite normal, you're starting to realize how sick you just where, & the fear of going backwards in any direction is paralyzing in itself. You want normalcy back in life but you're simply not the same person as before. And that's okay. Being sick is okay. Being imperfect is perfect. Life happens to everyone and if they say it doesn't they are probably 100% lying. I've been through things that blow my own mind but they make me better. They teach me a lifetimes worth of lessons. Gods timing and faith in that. I am not a patient person. Maybe that's why my patience is always being tested. Just rest in him and bring yourself home. Worrying will only drive yourself crazy. Be you. Be silly. Be happy. Be sad. BUT then be glad it happened at all.-Chelle