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