This is my last post from Rochester, New York. It’s been a long six weeks. And I am wiped out.

My mom was here last week. She did the rest of the kitchen, wrapping all the glass items and cleaned out the fridge! Such a blessing… Honestly if Paul didn’t do it I probably wouldn’t have gotten done. But mommy did it! She spent some time with my grandmother everyday — with or without me. In the evenings we watched girly movies. Some cheesy hallmark-type and some mid 90s classics like Emma and my favorite, Little Woman.

… And just like that she was gone and I’m awaiting Paul’s arrival this evening for our last weekend. As I write this post sitting on the couch, as always, in my notebook first, I’ve been feeding the birds with a real roll. I don’t eat gluten and now my mom is gone so might as well enjoy myself watching them.

The last six weeks has only reinforced what I already knew… I have a lot of work to before being alone for long stretches of time. It’s frustrating and at some moments a bit unnerving. I am very hopeful that specialists in Boston may do some actual digging to find root causes and find myself some real pain management but my guard is up. There’s not a lot of “healing“ or getting me healthy going on from standard western medical practices.

Recently, I received a phone call from the local pharmacist, he was checking to see if I was taking blood pressure medication because it was only filled once, however, my insurance company, three months later, called the pharmacist and wanted to know why it wasn’t being filled! The insurance company is NOT a medical practitioner. My blood pressure fluctuates typically due to pain. BP meds do not help and just 3 years ago I saw a cardiologist at MSK who was annoyed someone without a problem was wasting her time. I am NOT taking them! I won’t take them.… More on that in a minute. Huge question — why isn’t the insurance company calling about my controlled substances, be it, something I take every night or an opioid as my rescue medicine. If there’s such a huge opioid crisis shouldn’t they be on the phone questioning why is this being filled? The answer is no to all go of the above. It’s not up to the insurance company, it’s up to the doctor and for me to take responsibility.

The phone call was upsetting. I don’t like being spied on, judged or coerced into taking a medicine — I will not be coerced! So after calling Paul to make me feel better, I did some research. Clearly, doctors get paid to prescribe BP meds (and many others). The kicker is they don’t work. There’s only one study NOT paid for by Big Pharma. This is not shocking. The only one that has any proof of helping is the original BP med, a diuretic. Ya know, a water pill.

From: Getting Off (Or Avoiding) Blood Pressure Meds:

“When I was first in training, I learned that blood pressure levels normally rose with a person’s age. The magic formula we were taught? The systolic reading (the top number) was 100 plus your age. The bottom number should be 90 or lower.

Thus, a healthy blood pressure for a 50-year-old could be 150/90. Basically, you started treatment when someone’s blood pressure was 160/100 or higher. I remember one professor saying he preferred 160/95.

But then a series of studies began to appear in the US and Europe saying that the risks for heart disease and stroke increased if that formula (100 plus your age) was followed, and the ideal blood pressure was reported as 120/80, with treatment beginning at 140/90. And here’s where the controversy began.

Change the number, create a patient

Adjusting “ideal” blood pressure from 160/100 to 140/90 added 13.5 million new drug users. Trying to medicate people with 140/90 BP to even lower levels will add tens of millions more pill swallowers.”

So, no I will not take BP meds — if you read the article I linked above maybe you’d think twice too!

I do believe that God made us perfectly, you know, in His own image. And He supplied us with everything we need to be healthy. Now, what we have done to throw us off balance is another story.

I promised myself I wouldn’t go down a particular rabbit hole but how could I not, if it could improve my health! Two essential things — this is crazy, ready… light and water! So, sunlight, in your eyes at sunrise, up to the sun being at a 30° angle. Passed a 30° angle the benefits change and you miss the really important ones. Turns out it produces hormones and sets our circadian rhythms for the all important sleep. Sleep is beyond essential. That’s when the magic happens. I’m not a huge fan of indoor lights, I have sensitivities and although they are necessary, how can we limit the damage of blue light must be addressed. My first step has been getting morning light in my eyes and no, you don’t look directly at the sun and yes, you still do it on cloudy and rainy days, just for a bit longer. And not through windows because it doesn’t work. That’s just the tip of the “light” iceberg but my sleep is better and walking isn’t quite as painful. 

“I lost my circadian rhythm during extreme night shift work and I restored it by using continuous light therapy. I was waking up at sunrise with the birds, no alarm clock needed.” ― Steven Magee

The second thing is water! Yes water. Not tap water. I’m going with it’s never, healthy. We’ve damaged the structure of water but we can’t fix it! Once we are in our new place I will be only drinking spring water from glass bottles. It’s a much better use of our money than doctors appointments and needless prescriptions. 

That’s not the end of the water discussion but it is all for now.

I believe some sort of better health is possible for me. I don’t know about pain reduction because there is the possibility of structural and nerve damage from acromegaly, medication‘s and pituitary radiation. X-rays don’t necessarily show anything and unfortunately things are still progressing (as in getting worse) but I won’t quit on myself.

I did write in my last post that I was having a colonoscopy and endoscopy. I was given an all clear. No polyps but I have to wait three weeks for biopsies. I’m not expecting it to show anything. And no repeat needed for at least 10 years! Hallelujah! Don’t be afraid of having this test… it’s not a big deal just inconvenient. Eating gluten every day for one month, already knowing I had a severe sensitivity, destroyed my stomach, plus weird skin things started happening but it wasn’t enough to prove celiac disease. I already know there’s damage on two genes making me severely gluten sensitive so I am not even tempted to eat gluten. Going back to my 14 year ban. I think regular, everyday people (which I am not) don’t think too much about how their food is affecting them. Simple skin irritations, dry spots and scabby looking spots are not normal. Cut out gluten (giving it 3 months to pass through entirely and you may find things changing.

Another topic I’ve often written about since living in Rochester is my grandmother. Congestive heart failure will be her demise. Prayerfully, not too long. At nearly 96, she has resigned herself (mostly) to her  recliner with no lasting memory… accept if it is something negative! Why is this a thing, I do not know but sheesh! She can’t remember if she had a visitor but she remembers that 2 weeks ago, while at the hospital for a few days her religious medals were taken off her for an x-ray that never happened. Most likely stolen. I gave her my own chain with a small cross that I “borrowed” from my mom decades ago but in the last decade added my Great Grandmothers pieta medal. It gives her comfort but she is saying she has to give it back before I leave. I tell her it’s hers, her mom is with her and I’ll take it back when she is done and not before. She knows I’m leaving. Even though the past two years she’s certainly turned me down more times than not when it came to visiting — her elderly mind persuaded by the Covid narrative… She is showing sadness about my departure and now I am truly saddened that I, in all likelihood, will not see my Nana again in this life. My heart hurts and tears are rolling down my cheeks as I write this. Difficult as she may be, she is still my Nana and I love her. I hate to see her cry because I am leaving. It was hard when she cried every time I left before we moved here. I know this is life but I’m not sure I won’t be able to not cry in front of her. It is not the last in-person memory I want.

I AM excited to move and see what comes next. I know my body will take a beating and no, this is not negative thinking, it’s knowing my limits and being prepared. I will not be taking a seven hour drive to an air mattress. We have a hotel room for the night. I’m praying the movers will have our things delivered in the two day window rather than the nine day window. This body is truly not meant for air mattresses.

In other moving news, my lovely cactus dahlias have gone from our deck to the front shared space of the next townhouse. Our neighbor will take lovely care of these beauties! They’ll get to be in the ground, eventually! And thrive! Just as I pray we will, once settled.