Mission Impossible? Possibly, Yes.

Many things happening in Sunshine's world these days. Where to start?
Today my medical advocate came over and we went over notes (as i could) for 1 1/2 hours. Then i went into a ptsd episode and dissacociated fairly hard...but i brought myself back...somehow, someway and withing a few hours was mostly mentally recovered although not physically. Its very surreal that this is my life. Its very strange when i talk about my medical history from 2007 to now.

Annnyyywaaaaaayyyyys, in 2020, a Dr who didn't want my case gave me to a patient advocate to try to help establish home health care. She tried...and tried more. She was very seasoned and very frustrated. She eventually told me to go to the newspaper and state representatives about my case. See a previous blog about this. Sooooooo, i decided to touch base with her last November and a opening in the cerulean blue sky opened .....and doorways opened....and i decided to enter all of these openings. My state insurance decided to cover medical ambulatory transport for me to a Dr....oonnnn Monnndaaayyyyyy. I have not been to a Dr since 2018 besides ER ambulance visits past 3 years. Its going to be a big day for me. Its mostly to get paperwork signed and get some help with my basic needs at home. My husband and a few friends are my caregivers and they are greatly ready for help.

I have mixed feelings. Everything is always discombobulated looking. Lyme disease/epstein barr really attacked my cranial nerves in brain i was told by eye dr in 2017. So, stimulation etc is a bit much but i get excited to smell the air. I love seeing my favorite tree in my front yard. The one i used to mow the grass over and pick tulip leaves off the ground with my children and rub them with crayon rubbings. I used to rake its beautiful golden leaves and it held my weak body as i tried to prop myself up in 2017 as my daughter would play in the yard and i could no longer participate. Now, EMTS's hear my story and they move the stretcher under its leaves or branches and i get to see the stars and see its beautiful body. I am very connected to trees so its very bizarre not having touched one in so long. I used to earth daily for a great many years. Now, i wait to lay under it a few times a year with the help of EMTS's. What a strange world. What a strange life.

(**update: Bad things happened today. Despite 3 months of hard work and so much double checking...something was overseen and every dr appointment had to be canceled for me. The insurance company called today and the woman and a few friends worked hours on attempting to put this back together but it all came tumbling down...fast and hard. Someone in insurance company made a huge mistake. I will not be seeing outside Monday. I will not be seeing Dr's again. I am greatly saddened and upset.)

Today, my blog is not uplifting. There is your warning.
As if its not challenging enough to endure what i do, to attempt to raise 2 children while in this state. With such little support. You want to know how its more challenging? I can tell you. I can tell you a story that is unbelievable....but true. We have no income. None. No financial assistance. No food stamps. No anything. For almost 2 years. My husband has had 2 paychecks, one for $837 and the other amount similar. Why? Wellllll, its complicated. I don't even know how to answer it. My husband has fallen into a deep abyss of alcoholism. Hes not coping well. He reminds me of that man from the movie Song of the Sea, when he loses his wife and he just cries and drinks. He used to cry it was like i was dead ....and then he decided to treat me as if i mostly was. Its the only way he can cope with our reality. He has acquired a few jobs but nothing pans out. He had a soccer injury and surgery that was complicated in 2020. So many perfect storms. So many. Only 6 years ago he was working in a big city making very good money...then everything collapsed. My medical bills took over. We never saw this chapter coming in our 30's. ever. ever. So, we are living off of a 401k. Barely. As each month passes with new plans he tries....failing.

I am uncertain. Uncertain of so many things. I enter a state of partial numbness to even kind of cope with my reality. I am covered in giant hives for 2 days...which although not uncommon and used to be much worse, this is a pronounced flare for me. My lips are massively swollen for almost 24 hours now. I have a really great lyme practioner i found last year in Colorado but she costs money. I saw her once last July because i was able to scrape the funds together with a few friends that for some reason didn't give up on me. But i;m in this 4 years now. You guys get it. I just go without now. There are no plan b's, c's or d's anymore. I am awaiting a way to be made while it all collapses around me. Family bickers. No one wants to take my case on. From an observers point, its quite an incredible place i am in. Everything is collapsing. I can float. I can surrender. I can trust that somehow a way will be made. I can trust one of my 18 aunts and uncles will finally read my newspaper article and say hey, you guys don't have to do this alone anymore. Thats a long stretch though. Do you know how many people in my family read my story that i did in an attempt to get access to medical healthcare? one. my father. My own husband refused to be interviewed for it and would not read it. The amount of denial that surrounds me....is mind boggling...on a good day.

I do have some really amazing friends i have met through the chronic illness community and i am so beyond grateful for them. Understatement. When i was attending a LLMD in 2018, i lay on his table shaking in fetal position hardly able to see or hold my head up etc. He had ptsd from military stuff and unfortunately i triggered him that day and he left the room crying. MY DR LEFT THE ROOM CRYING. To me that signaled i was in pretty deep s***. The end of my line of Drs was running out of ideas. So, he came back in the room with a phone and he said will you talk to this woman? Her name is Charlotte. She is 64. She has what you have. Her and i connected. Immediately. Her grown daughters abandoned her mostly and treated her like a leper with lyme disease. Even through 2 of them are nurses. My family did similar to me. And she adopted me. We have spoke or texted every day twice a day for almost 4 years. She calls me her 2nd daughter. She lives on a 60 acre farm with every fruit tree. A bass filled lake fresh with no chemicals anywhere on property. A little farm store. And for years she told me, i am going to heal and i am going to bake pies with her on her farm and we will pick apples and laugh and put our feet on the earth. She told me when i get strong enough, her husband will come get me and i will stay with them to recover and heal more away from my unhealthy environment.......................... Her cancer just returned. And its not good. Its not good at all. Shes fought so hard for so long. I know her fighting spirit well, its shifting. This isn't fair and i feel in a fair amount of shock because i am working so hard everyday to get better and make that cherry pie with her. My heart is shattered for her suffering. Thoughts of her farm keep me going somedays. Shes one of the best people in the world. I can't even yet process this.

My blog is incredibly sad today and for that i apologize. The world is full of suffering. But, in truth, everything is so heavy for me right now that i cannot foresee a moment where i do not release some of this. So, i guess i am doing that now and here.

A friend recently told me, my life is like that last scene in Fight club where everything collapses but they remain calm amidst total annhililation. She started crying and said thats you. You think you make others sad but you bring me such joy while you handle implosion after implosion. Somehow you raise normal children, somehow you are still mostly sane (for now). Somehow you make others smile. Shes not wrong about the imploding. I feel completely numb and like i very much so resonate with that Pixies song "where is my mind". Shell shocked. Numb.

I don't know what to say...or do...about any of this right now. So i guess....i just lay here and breathe tonight. Because i can breathe.

(** An amazing person from this community offered to do some research for me today and possibly found a Dr that will see me via tele health. I will find out more on Monday. This was unexpected and i am very grateful. Thank you from the bottom of my heart).


I've been living in a bad dream
I've been living in a bad, bad dream
Sleepwalking through a sad scene
I've been living in a bad, bad dream

I wish that somebody would wake me
Don't like this feeling, won't you shake me
'Cause any more might break me
And you'll never know

Comments

@sunshine44, thank you for sharing all of this. This enormous burden that you seem to carry with such grace, and though you think you’re burdening us with sadness re: this particular post, you’re not. You’re human, and the people surrounding you are flawed like us all, and, well, apparently “very” human, too.

Remember, don’t wait for others to come to you. Reach out and garner some support and if it does not come to fruition, then you still did right by yourself and your family. You tried. That’s the best you can do, as you know, because we are not in charge of outcomes. “The best laid schemes of mice and men.”

I for one am cheering you on and I admire your strength and insatiable will to life. What’s that famous quote from Winston Churchill that I’m sure you’ve heard before? “If you’re going through hell, keep going.” Well, for many of us, this hell is never-ending, and I know yours is intolerable a lot of the time. Nevertheless, you keep at it and you ask for help and you’re bound to get lucky at least one time. Maybe even twice, if you’re lucky.
 
@sunshine44, thank you for sharing all of this. This enormous burden that you seem to carry with such grace, and though you think you’re burdening us with sadness re: this particular post, you’re not. You’re human, and the people surrounding you are flawed like us all, and, well, apparently “very” human, too.

Remember, don’t wait for others to come to you. Reach out and garner some support and if it does not come to fruition, then you still did right by yourself and your family. You tried. That’s the best you can do, as you know, because we are not in charge of outcomes. “The best laid schemes of mice and men.”

I for one am cheering you on and I admire your strength and insatiable will to life. What’s that famous quote from Winston Churchill that I’m sure you’ve heard before? “If you’re going through hell, keep going.” Well, for many of us, this hell is never-ending, and I know yours is intolerable a lot of the time. Nevertheless, you keep at it and you ask for help and you’re bound to get lucky at least one time. Maybe even twice, if you’re lucky.

Thank you, Dave. These words helped lift my spirits. I appreciate it.
 
There is no denying that your situation is brutal. The way insurance works is simply a crime. Dealing with it day in and day out for over 4 years, and still being here is a massive testament to your internal strength! You have a strong heart and spirit, and it has continually gotten you through. I feel a great many people out there today could not have endured what you continue to.
Perhaps a rather lame idea... but have you tried those "go fund me" platforms? I don't know much about them, but I have heard amazing stories about people raising enough money through them to have major surgeries and things of that nature done. I would think there would be folk in this community who would know a good deal about those things?
:hug: :tulip:
 
There is no denying that your situation is brutal. The way insurance works is simply a crime. Dealing with it day in and day out for over 4 years, and still being here is a massive testament to your internal strength! You have a strong heart and spirit, and it has continually gotten you through. I feel a great many people out there today could not have endured what you continue to.
Perhaps a rather lame idea... but have you tried those "go fund me" platforms? I don't know much about them, but I have heard amazing stories about people raising enough money through them to have major surgeries and things of that nature done. I would think there would be folk in this community who would know a good deal about those things?
:hug: :tulip:

Thank-you. Your words mean alot Wolf. :)
Thats actually a really good idea. I do actually. One was opened the year i became very ill. I haven't utilized it much recently because its embarrassing but maybe i will post it in comments. Moderators, if its not allowed, i apologize and please remove.

https://www.gofundme.com/f/3b4rf-lyme-disease-medical-expenses
 
@sunshine44 there must be a way to improve your situation. How can one of the richest countries in the world neglect its citizens in this way?

Thank you Andy. Its a very loaded question most certainly. One i contemplate often. I do believe good things are possible too. I actually got some strangely good news this evening, possibly...and will write more on it soon.
 
Well @sunshine44 .....after so much bad news on your front, I know we'd all joint you in welcoming what may possibly be the good stuff! That would be wonderful.

Again, and I know I've probably missed it, would you please tell us the ages of your children? It's always nice to be reminded of these things once-in-awhile.

Back at school again. Another year that will be finished....and it all goes by so fast. How can another year disappear? Well, because that's what they do and we're left with wondering how it could have have happened.

Thanks for your good wishes and I'm truly sorry if I caused any of you to unduly worry. Rather ridiculous on my end of things.

What are the fancy costumes for children today? Probably more sci-fi, is that right? Well, enjoy yourselves even if it's in your heads. It means a lot. Yours Lenora.
 
hey dear @lenora, thank you for the grounding reminders. Yes, i was having a heavy vent day this blogging day. My son is 17 and my daughter is 7 :) It does go by incredibly fast. Its a strange, strange world.

I hope you are healing well dear one. Thinking of you :heart:
 

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