Sooooo, I thought I would do a brainstorm sesh here. To assist me in navigating some important upcoming shifts in my life.
Note: please keep things in the more upbeat section for me as I have much to traverse and not a lot of bandwidth for worst case scenarios. Thank you
To begin, yesterday was my birthday. My SEVENTH homebound bedridden birthday. Wow. Time flies when you are having fun staying alive! My new aide helped give me a REAL bed bath and it was incredible and magical. Truly. 2nd bath in 5 years. Beyond sponge bed baths. Incredible. Mermaid territory. Want to live in the water.
K, next up, I went outside!!!
First time since my daughter was 3 and got to see her play!! Kinda. My brain is super distorted and difficult to see process so much. But I was present. I smelled the outside. I heard birds. My daughter and I were in heaven. Yes the humidity was tough on my brain for 20 minutes. Family and friends finally moved me out there as I’ve been begging to do this for a year! Truly so blessed.
What has changed? Well I’ve mostly toileted myself for an entire week. No seizures trying to sit up. My best guess is out of desperation, I upped my adrenal cortex bovine supplement to 2 a day. Has made a world of difference. Possibly. Or we will see. Idk. But I take it for now.
I went and saw an oral surgeon last week. My medical advocate arranged medical transport with my pcp. So I went by ambulance with emt friends for 4 hours. Great times. I need surgery. It’s kinda as bad as I thought and also not as bad as I thought. I do not yet need jaw surgery. There are risks. Surgeon will only do it in hospital under anesthesia. I first need clearance from a cardiologist and a full physical
which I’m sure will be super easy to get to.
Soooo, dentist is scheduled in early July. Family and friends are going to attempt to transport me. They cannot take off of much more work though AND this is not easy for a few untrained people. One being almost 70. Since I’ve not had any seizures all week. And ambulance rides are NOT cheap as you can imagine. Is this a shitshow? Yes. But my best I do. The pain is unimaginable at times as you can imagine. Dr did not call in antibiotic till day 10 and family and friends were not really wanting to take me to er for this. So it seems. Sooooo, I had to tough out unimaginable stuff. Agsin. Only worse. And used grapefruit seed extract and heka lava and kreostum homeopathy. And I beat a wicked infection. In my ear eye and throat too. Awful. It will be back surgeon said and I am vigilant of it. It’s honestly beyond insane that my home health care offered NOTHING but ER during this entire escapade
Annnd they are billing my treatment as hospice on my medical bill but my nurse friend is mad and said I wish you had hospice! They would actually give you what you need.
What a rackett this entire situation is.
Back to things.
So I’m going to Cleveland clinic neurologist in late July. 2 family and friends volunteered for the experiment. Should be really fun. 5 hours away. They also want me in with infectious disease and an internal med dr to order more specialists but just that Dr is booked until October. Specialists are even further out. So, I think I’m going up just see this neurologist. Was hoping for more. And maybe that’s what God has in my cards for now. Hopeful they can get me testing and ideas and advice on how yk proceed with this surgery. Plus, other advice things and maybe clearance FOR this surgery.
Oh boy, I’m really not sure how this all pans out. I did not do well with anesthesia in 2013. Surgeon said there are multiple risks. Also possibly worsening my condition afterwards. She didn’t seem on board with local anesthesia. Maybe it’s more entailed than I realize. But I could inquire more. If needed.
So some things need to happen.
Mouth is in bad shape after covid. I can no longer chew. Puréed foods only and such little assistance.
Bought an electric skillet for bed.
Pulling out my wild cards and imagination station but tough times are still tough times.
I have to think positive. I did all I could. I’ve never had one cavity in my life. Was always told I could be a dental model. Until. All of this. Now, Lyme has crumbled my teeth. I guess a vitamin D level of 6 will assist in that. And all the associated things
such a terrible illness. But the pain is comparable to childbirth and I can’t keep doing this. It’s too torturous and slow going.
Root canals are not advised in neuro Lyme cases so I might be getting REAL interesting news in a few weeks. It’s a difficult concept to think of my once beautiful and perfectly aligned teeth. Never any braces etc…. Being shattered. Another thing destroyed by this disease. But, keep my head up I must. Move forward on this board, is now immediately necessary.
I think that’s all. For now. There’s probably more but that’s what I can get yo for now. A cardiologist is in the works too.
Chop wood.
Carry water.
Chop wood.
Carry water.
Note: please keep things in the more upbeat section for me as I have much to traverse and not a lot of bandwidth for worst case scenarios. Thank you
To begin, yesterday was my birthday. My SEVENTH homebound bedridden birthday. Wow. Time flies when you are having fun staying alive! My new aide helped give me a REAL bed bath and it was incredible and magical. Truly. 2nd bath in 5 years. Beyond sponge bed baths. Incredible. Mermaid territory. Want to live in the water.
K, next up, I went outside!!!
First time since my daughter was 3 and got to see her play!! Kinda. My brain is super distorted and difficult to see process so much. But I was present. I smelled the outside. I heard birds. My daughter and I were in heaven. Yes the humidity was tough on my brain for 20 minutes. Family and friends finally moved me out there as I’ve been begging to do this for a year! Truly so blessed.
What has changed? Well I’ve mostly toileted myself for an entire week. No seizures trying to sit up. My best guess is out of desperation, I upped my adrenal cortex bovine supplement to 2 a day. Has made a world of difference. Possibly. Or we will see. Idk. But I take it for now.
I went and saw an oral surgeon last week. My medical advocate arranged medical transport with my pcp. So I went by ambulance with emt friends for 4 hours. Great times. I need surgery. It’s kinda as bad as I thought and also not as bad as I thought. I do not yet need jaw surgery. There are risks. Surgeon will only do it in hospital under anesthesia. I first need clearance from a cardiologist and a full physical
which I’m sure will be super easy to get to. Soooo, dentist is scheduled in early July. Family and friends are going to attempt to transport me. They cannot take off of much more work though AND this is not easy for a few untrained people. One being almost 70. Since I’ve not had any seizures all week. And ambulance rides are NOT cheap as you can imagine. Is this a shitshow? Yes. But my best I do. The pain is unimaginable at times as you can imagine. Dr did not call in antibiotic till day 10 and family and friends were not really wanting to take me to er for this. So it seems. Sooooo, I had to tough out unimaginable stuff. Agsin. Only worse. And used grapefruit seed extract and heka lava and kreostum homeopathy. And I beat a wicked infection. In my ear eye and throat too. Awful. It will be back surgeon said and I am vigilant of it. It’s honestly beyond insane that my home health care offered NOTHING but ER during this entire escapade
Annnd they are billing my treatment as hospice on my medical bill but my nurse friend is mad and said I wish you had hospice! They would actually give you what you need. What a rackett this entire situation is.
Back to things.
So I’m going to Cleveland clinic neurologist in late July. 2 family and friends volunteered for the experiment. Should be really fun. 5 hours away. They also want me in with infectious disease and an internal med dr to order more specialists but just that Dr is booked until October. Specialists are even further out. So, I think I’m going up just see this neurologist. Was hoping for more. And maybe that’s what God has in my cards for now. Hopeful they can get me testing and ideas and advice on how yk proceed with this surgery. Plus, other advice things and maybe clearance FOR this surgery.
Oh boy, I’m really not sure how this all pans out. I did not do well with anesthesia in 2013. Surgeon said there are multiple risks. Also possibly worsening my condition afterwards. She didn’t seem on board with local anesthesia. Maybe it’s more entailed than I realize. But I could inquire more. If needed.
So some things need to happen.
Mouth is in bad shape after covid. I can no longer chew. Puréed foods only and such little assistance.
Bought an electric skillet for bed.
Pulling out my wild cards and imagination station but tough times are still tough times.
I have to think positive. I did all I could. I’ve never had one cavity in my life. Was always told I could be a dental model. Until. All of this. Now, Lyme has crumbled my teeth. I guess a vitamin D level of 6 will assist in that. And all the associated things
such a terrible illness. But the pain is comparable to childbirth and I can’t keep doing this. It’s too torturous and slow going. Root canals are not advised in neuro Lyme cases so I might be getting REAL interesting news in a few weeks. It’s a difficult concept to think of my once beautiful and perfectly aligned teeth. Never any braces etc…. Being shattered. Another thing destroyed by this disease. But, keep my head up I must. Move forward on this board, is now immediately necessary.
I think that’s all. For now. There’s probably more but that’s what I can get yo for now. A cardiologist is in the works too.
Chop wood.
Carry water.
Chop wood.
Carry water.
