Hey everyone!  It’s been just over 2 weeks since my last post, it’s been a pretty horrible 2  weeks for the most part, but as always, wonderful moments in the mix.

Last night, OMG. 

I’ve been dealing with this back and hip pain, I wrote about it a couple of times before.  I’ve been trying to manage it, but without any input and shoulder shrugs from doctors, as with so many things with this disease, I’ve been left alone to figure it out.

To be clear, VERY clear; even though you receive this terminal diagnosis, you are left to deal with it.  Sure my neurologist said this pain is caused by spinal/cerebral fluid but she neglected to tell me anything else…..like what to expect it how to handle the repercussions. 

So Google it is…..and peer support.

Anyway,  over the past few weeks things have gotten worse.  It exploded last night. 

I’ve spent a total of 9 days in the last two weeks unable to function properly.  Pressure, numbness and pain that has went from subtle to annoying to intense to last night’s excruciating nightmare.

Every nerve in my spine area, down through my arms, down my legs.  It just went BANG.  Systematically crawling down my body.  I couldn’t move. My body was burning up, my skin red in patches.  Bawled my eyes out.

My nurse at the Alzheimer’s Society reached out to my neurologist last week and she is yet to respond.  My GP, although initially helpful, just seems so disinterested.  I need a new Dr. 

I’ve looked things up this morning, I guess it’s a thing, a nerve thing.  I’m not a doctor, but my symptoms are text book.

Neuropathic Pain. Often caused by too much fluid and causes more damage and pain.  Lots of information available and the importance of the correct management both with medication and physio and massage.

I think back to my first real significant incident ( around March of last year) and trying to remember the feeling.  I know for sure it’s gotten worse progressively, more frequent and lasting hours more.  It’s aweful.

I guess that receptor (s) in my brain are now being effected.  I don’t have a cold or infection, no other organ in my body is in anyway ill or damaged,  but it is entirely possible it’s also inflammation or inflammatory response in my body to something in my brain. Now taking more of my natural inflammatory stuff.

My thought process is to find the inflammation. ( The source of all illness).  Drs want a spinal tap to measure the AB proteins.

Look.  I have EOA. I know I have AB plaques and proteins.  That’s a given.  Sticking a needle in my spine to take 1lt of fluid so you can measure the amounts will NOT help with my daily living.  Help me manage this.

In a strange way, my A-Typical diagnosis might just help carepartners manage their loved ones symptoms.

Since my form of this disease sort of works backwards; in other words, I experience with full cognitive awareness and communication the symptoms that ” normally” happen later at a time when a person with this disease cannot fully communicate the issue, I can.  It’s an odd sort of happiness.  I can hopefully provide insight but at the same time……well , you get the point.

I can communicate all the things, but still, there is little help.  I can manage taking pain medication and know when I need to take it, but honestly, this whole thing is taking a toll.

I miss time spent with my family. 

I can only hope that I get this to be more manageable; that I’m able to find a new routine, exercise and whatever else I need to keep me living well.  I am doing the best I can for me, trying so hard to keep my life normal in-between these setbacks, it’s tough. 

I’m resilient though.  I’m not a martyr. I don’t give up, never have.  I’ll keep you periodically updated on how I’m doing with this.  Thanks for listening.

Segue…..

I’ve been eating more regularly.  That is to say, I still don’t eat normally, I just don’t get hunger signals like hunger pains, also my brain doesn’t tell my body to eat, but I’m doing better.  I’ve set Google Mini to remind me to eat, it’s helping.

My daughter has contacted VON to arrange food drop offs and in home check ups to make sure I’m eating.  That starts next week I think.  I love her.

In a few months, I’ll be moving in with my daughter and her family.  It will be so nice to have daily company.  I’ve lived alone for almost 20 years.  ( wow! That’s a long time lol.) If I had not had this disease, I would have certainly waited another 15 years or more to accept an invitation to live with my family, but now, I am eager to be with them.

I did a photo shoot with a group of kids and my eldest grandchildren the other day ( a wellness day needing time away from this illness).  It was wonderful!  I’ll be finishing the photos for the client today ( so long as I can manage my symptoms well).  I hope they like them!

Health does not always come from medicine. Most of the time it comes from peace of mind, peace in the heart, peace in the soul. It comes from laughter and love.

I do all I can, quite successfully, to integrate all those beautiful things in my life, no matter the circumstance.  The uncomfortable moments of living with this disease are eased greatly with this beauty.

Remember to leave the light on for your loved ones and friends.  Answer when they call and open the door when they stop by.  When someone needs to talk, be there, listen , really listen.  Disease and illness of all kind changes lives, no matter if you are the diagnosed or the loved one.

Sometimes you just need to talk
about it – not to get sympathy or help, but just to kill its power by allowing the truth of things to hit the air. 

Stay well my friends xo Jan
https://youtu.be/nqnkBdExjws