This is my granddaughter; well, my granddaughters feet and a few tiny fingers. Hide and Go Seek is a new favorite game for her, and the above picture is her FAVORITE hiding spot. I love her.

She tries hard to get her younger sister to hide in the pantry cupboard too, but the little one just wants to climb in the rolling drawers or pull everything out, its so funny. But finding her big sister “Susu” is a thrill of a lifetime…..even if its in the same place every-time, they are so wonderful!

Next……..

Hello, and thank you for staying connected. I know its been quite some time since I have written anything, so, again, thank you for continuing to visit/check in while I took some (more) time out. I hope you are all safe and well. xo

When I last wrote a bloggy thing, I let you know my Dr. had up’d my pain med’s to a ridiculous amount, it wasn’t helping, in fact I honestly felt worse.

So much has happened over the past few months. Medication changes, seizure-like-episodes, hospital visits and doctors who continually say, ” you seem fine now….”, ” I can’t explain what happened to you”, ” I’ll write you a prescription for that….” . Tele-medicine calls, COVID 19 virtual / exasperating / impersonal/ rushed/ vacant/ …………arrrgh. It has really sucked.

The exhaustion I felt, the lack of connectivity from COVID, hit me most not being able to see my Doctor. I just wanted to sit across from any one of my doctors and ( in my animated way) show them, tell them, allow them to see me.

I do not go to my doctors (s) much, but somewhere inside, I felt a longing for a personal connection with them, not just a phone call. I was experiencing so many “new” changes and a steel sounding phone call just didn’t cut it for me. Trying to get my one doctor to understand what I was trying to explain without her interrupting me was exasperating; I could feel and hear the “rush” in her voice while we were on (several) our calls. Her solution was to “practice’ on me and change- change- change meds. I was so annoyed.

I have “weened” off 2 different meds since my last bloggy thing entry ( 3 in total, just sayin’) and there is one new prescription awaiting my pick up. I am seriously debating now, and will probably still debate once they are in my possession, whether or not I will take them immediately. I feel my body just need some time to breathe.

The medication ( for nerve pain) increases the serotonin in my brain, that is supposed to ease/stop the pain. Its not working. This will be the 4th medication. I have obviously been rethinking this especially as this doctor says she is running out of options. SERIOUSLY??????

As far as I know, that’s pretty impossible.

So I am going to try a few things on my own. I have never been one to take pills. As I wrote before, 2 Tylenol could put me to sleep. I have taken so much medication over the past year, it has in my opinion made me worse. Ongoing increases to brutal dosages and only feeling worse. I am toxic.

this is not the first time I have felt this way, through medications. I wrote once before about my experience with one doctor and his ease of writing ‘scripts. That was my first F-bomb to a medical professional.

Moving forward, gut health, more exercise, more water, more magnesium, higher vitamin C intake, richer foods. Just in the last week while “weening” I feel much better. I am even eating. I am eating. … and I have lost 16 horrible pounds of toxic waste through the “weening” process over the past month. I am sleeping normal ( my normal) and I can taste food as it should taste.

I know, I know, I may be overthinking this………but what if I’m not????? It is a chance I am willing and ready to take…. after all, I Am My Own Lab Rat ( that was a good blog, please search back and read that one if you get a chance.)

Having a fatal illness takes alot of your time and effort. It is alot to take in for one and with my illness, there is so much they don’t know about this disease; sometimes I feel its a guessing game for the doctors that you trust. I know I have to trust in how I feel.

In my opinion, treating a person (patient) with this disease + a vast unknown, the same as a person (patient) with “normal” onset of signs and symptoms of particular known illnesses is doing all those with Dementia a great unjust. We, those with Dementia, do not “acquire” these types of illness for the same rhyme or reason.

As the numerous sectors/sections of our brains become affected and/ or die, and /or just ping, in my head ( lol) that dosen’t mean I will ALWAYS be symptomatic of these things. I hope you are following me on this…….

My brain, in all its glory, is misfiring. I believe the “misfiring” can create symptomatic things of such illnesses ( such as the neuro pain I clearly have had) and it could be possible that it needs to be treated in a different manner. Perhaps that’s a big jump, I’m happy to wrong if that is the case.

Further to that………….. just because I have Dementia, that DOES NOT mean I am stupid. Even the Scarecrow still had sense.

I have promised my daughter that at the first onset of pain, I’ll take the med’s the doctor has prescribed. Although my daughter , right now, is not too trusting of that statement, I still promise to “take as directed” the moment I feel anything lurking. I will mostly because the pain I have endured over the last 9 or 10 months has been horrendous, I don’t want to be in a position of complete non-recovery. In speaking with my Mum, she agrees taking a break might just be a healthy decision, and she made me promise to start my prescription if the pain reoccurs, and I promised that to her as well.

In addition to all that, I will contact my GP to have her set up an appointment at a pain clinic ( thank you Christine xo); they may have different ideas about treating this, I’m game for anything.

To be clear, I do not take the pain that I have endured, lightly, I do not want to be in pain. I have missed out on so many things, big things and small, I do not want to continue to live in pain, I want to be as healthy as I can be through the course of this illness, maintain a strong vibe and just be happy.

As always, more on all the above later.

Next……

I always do my best to remember things from my life. I have deep embedded memories ( those are my repeat stories that I may tell several times in a year) , and those memories that are prompted by scents, like a certain scent that reminds me of Christmas with my Mum. More recently , say the last few years, my “remember scent” ,as I call it, doesn’t work as well as it used to. I can breathe in a scent and say, ” ooooooooo! I can’t quite remember what that relates to, but I know it is reminiscent of something or a time in my life, I know I’ve been with that before.”

Coconut scents reminds me of summers at our backyard pool and vacations in Cape Cod Massachusetts, the scent of oranges reminds me of Soccer with my Dad and how my sister Susie as a child and through her teenage years smelt, the scent of roses remind me of my stepfather and how they grew so lovely at the side of our house. It is all bitter sweet smells…… my Father, My Sister and my Stepfather have all passed, I miss them dearly.

Other such scents of metals, both copper and nickle, have relevance to me for lots of reasons; Lavender is a wonderful memory, rosemary and basil, pure cream and the smell of an old Chevy; Mr. Clean cleaning stuff as well as sunlight dishsoap; Cadbury Flaky chocolate bar from Scotland, rock candy and newspaper, they all have memory attached to them. Its crazy when you think about how memory is more than just a thought, it is an entire experience of all the senses. Taste, Touch, Sight, Hearing and Feeling. I want so much to hold on to them all.

The one “remember scent” I could live without is that pre -ripped half piece of Doublemint gum your Mum gives you that tastes like perfume and purse dirt, I could do with out that. Hahahahahah! BUT, there is so much more to that than just that piece of gum though, its a wonderful thing. ( although I still cannot chew Doublemint gum).

And finally for today, these few thoughts……….

Stay hopeful, tomorrow is another day and you never know what it may bring; give everyday all you got, even if its just a little less than other days, give what you can to yourself and others the best you can.

Nothing in the world can trouble you more than your own thoughts, be kind to yourself, foremost.

So as I close this bloggy thing today, I remember a few famous words from a beautiful blue fish…….”Just Keep Swimming”.

Stay well my friends xo Jan xo

and now…… a blast from my ( and perhaps yours ) past; 70’s summer favorites: https://www.youtube.com/watch?v=Hz2Cv6Zb9a0