It's early.

It is early today in the Germann household. I've been up since 5 am. My new normal. The only problem... I'm not able to sleep until after midnight. A spoonie needs her sleep. Every morning on the dot, I wake at 5 am... i am currently waiting on my home health nurse to arrive here. Today I have home health IVIG. I find it ironic I have an infusion once a week that make me sick for a minimum of a day, to feel better. Well actually, for me it is to keep me alive. Not because of my POTS, or several other conditions, it's that lovely old mean Autoimmune Encephalitis. My steroid weight is slowly coming off and my hair is growing back in. BROWN! I think I'm having an identity crisis. So I have some long thin-brittle red hair and baby patches of brown hair. Its bananas! (Something that has helped my steroid weight come off is lymphatic drainage... and I have been using the Noblerex Platium machine. It also helps healing and strengthens muscles. I personally love it. It has helped me gain some leg muscles again.) 

This morning I have been reflecting on my past year.... tomorrow is my 1 year wedding anniversary! 

It has been a year of trials, great suffering, heartaches, yet a year full of limited love. My mother lost her job to take care of me when I was dying and has not found one since despite great efforts. She feels bad but all I see is a brave, beautiful, strong woman who so selflessly gave up her stability for her grown daughter. I have the best mother on this planet. Idk why some trials happen, but I know God is watching over us. He will bless her for her blessings she gave to me. I do not know a better person in this world then my momma. I really don't. 

My dearhushand has stood besides me continously. He could have walked away or deemed me crazy as some negligent doctors did. He could have ran from the chaos and pain. But he merely stood besides me and held my hand. Even when I was fat from the extreme doses of steroids that are the only reason I write this today. It is crazy how life works. Things happen beyond our control and all we can do is our best and learn the lessons within the storms of our personal trials. I believe God helped us this year. Getting married was such a big decision. It meant losing heslthcare and financial stability of my disability. It meant choosing the harder right then the easier left. So of course Satan had to play his game and try to ruin the goodness. My first year of marriage is a true testimony of walking blindly in faith and choosing the right. And that choosing the right won't always make everything easy or go "right". It simply means trusting in our heavenly father and following his teachings. But I know we will be blessed if we have not yet been already. I value and cherish my hard first year of marriage because though I wanted to die and all but did.... the blessings where innumerable even if it did not always seem that way. I have such a good husband and I am ready for year number 2 tomorrow. A brand new start. Hopefully with health and little trial. Xo -Chelle 

We love halloween! We've watched the classic movies. I didn't get any trickery treated. Ap my heart hurt a little lol but we had a fun might together after Husband got off work! After all we went to a church halloween dance for our first date... 

 I was a scare crow

We  were too lazy to carve our pumpkins so we switched to our artistic painting ablilities.

M.I.A.

I realize I've been quiet lately. I've fallen into blogger silence. I just have not had a lot of updates. There seems to be steady improvement but at the end of the day I am walking on ice. I have many victories but my heart hurts most days. I know every single thing is in God's hands and he has a plan for me. A plan Devine than my own patience. So I will rest in him. This song perfectly sums up my many emotions right now. I'm grieving, to put it simply. Which is actually a good sign because the fact that I am processing g means I am feeling better and no longer merely just surviving. It is part of the healing process. "Even when I can't speak" by julie yardley is a beautiful song for times of hardship reminding us if the bond between our heavenly father and us. It is consistent even when we ate not. Never lose faith lovies. If your world crumbles he can save you & he will in his timing. There are many lessons to be learned here on earth and trials to be overcome. For this I can honestly testify. Love yourself and be more patient to yourself. My sweet grandmother told me that I didn't always have to be so brave in my last conversation with her. I remember being confused because I was doing SO well. She is my angel. And her wisdom rings in my head when things get tough and I allow myself to step back now and take a break when needed. As grandma would say "just do the best with what the lord has given you and do your part and everything will work out." -Chelle
Here is the link to Julie's song.
https://www.invubu.com/music/show/song/Julie-Yardley/When-I-Can't-Speak.html

It's going to be okay.

Another sleepless night.  I don't know if this means the treatments to pull me out of coma brain are working, or if my body is just being its abnormal self.  I have had a lot of time to think lately. And I do know that it is going to be okay. God will heal me again. In his time, not mine. But I will be well again. It is gonna take a lot more work and a little more effort.

This popped up on my newsfeed after I said my prayers that were of gratitude tonight for all that I do have. 

This year has been a very trying year. I have felt emotions of all kinds. Brain injuries are no joke. Poor health care next to abuse is no joke. And I was handed both unfortunately this year. I have not talked a lot about this but when I almost went comatose and seized several times 24-7, the neurologists in the hospital called me crazy. First theory was that my husband was abusing me and next was my parents where playing Into "it". It referring to me being dramatic and crazy. I don't know how this could make a personal nearly die or go into a coma... my body literally shit itself down. The hospital neurologist told me this theory and called my neurologist and told him, "that he knew I was dying and did not want to deal with me." "She is too complicated " my neurologist by the grace of God knew what was wrong with me and begged them to run just one dose of Ivig and see how it would save me... something I had been on for nearly a year at one point. So it wasn't new to my body. I really had nothing to loose at this point in time. That hospital refused and sent me home to die. They knew..and they didn't even tell me, though I knew... I felt how terribly sick I was. I don't remeber majority of these times but they happened. They led my family to believe I was a wack job. Also lucky for me I had a supporting, loving family that did not buy into this ridiculous theory. My neurologist was not seeing patients at this time and was out of work but kept in contact with us due to the dier circumstances. So because he was not in practice it stalled me out to seek proper treatments faster. And I faded. He told me it would be one heck of a year. He said it would be gut wrenchingly hard. He had me on as much steroids that could be prescribed which led to awful side effects and temporary cushings syndrome. I gained a ton of weight, was unrecognizable at one point due to moon face, I was covered in sores that turned out to be from steroids, I lost a lot of hair, and most importantly I lost my brain. But that steroid saved my life... I temporarily lost pretty much all functions. I went non responsive for 30 minutes the end of January. For a time I looked exactly like I had a stroke. My right side didn't work.  I couldn't talk or hold a spoon to feed myself. I could not walk. In fact I still struggle to walk properly. The funny part is it's not recognizable to the blind eye. Some days I can't decide what year it is. Basic things are just not clear anymore.  I temmor, I hurt like never before.

 I can't even begin to explain the unimaginable year I've truly had. There just aren't enough words. My poor mother lost her job because of me needing her care and help. So I hid away, mostly to take time to heal but no one needed to see the true horrors of my reality. I have progressed with treatments but I'm still just not there and I may never be there again. Until Heavenly Father confirmed it to me tonight. On another sleepless night I lay awake and try to digest all of these things that happened this year. I try to refocus on the larger picture and what God would want from me to learn from this. Because after all that's why I am having to endure this. It is gonna be long and hard. As it alwaysseems.to be with these trials.of health. I fight though, and I can still advocate for myself. Something I have not felt able to do since all this hit. Heavenly Father can and will heal my broken brain. And I am still a smart girl. I may take a little longer and it may take a little more effort but I am not quitting this fight. I will walk in faith and my Heavenly Father will wall besides me the whole way. There is a journey ahead of me but I choose to look up not down. I have been grieving long enough now it is time for my voice to be heard. -Chelle

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