I haven’t made a post for 2 years! I didn’t have a bit of interest as I navigated new realizations and confronted long-held standards that I lost faith in long ago.

My last post was just after our move from Rochester, NY, including leaving my grandmother. Upon rereading what I wrote, it stung. I wrote I promised to come visit and I did, for her funeral not even a year later. The last decade of her life certainly made her more difficult, but the loss of her is deeply felt. In some cases, it’s easy to forget the bad and just remember the warm hugs and that I was always be “her doll.” 

And just like that, Rochester is in the rearview mirror. Most likely not a place I will visit ever again. Which is strange since I’ve been going there since I was born, lived there through college, and once again with my husband. 

I also wrote of an anticipation of coming back to Massachusetts with high hopes for answers and ways to stop the pain (within centralized medicine). I did not. The pituitary endocrinologist “doesn’t do that” …her answer for everything. When I improved my thyroid after stopping medication she was shocked. How did I do that?? …I did it with sunlight and grounding. It is the first step to all healing. I don’t care who believes it. It doesn’t make it untrue. After all the first line of the Bible contains “let there be light” Gen 1:3. God always has the answer for us if we decide to listen.

And then there was pain management and insurance fraud on some part. I will start with I really liked the pain management doctor. He was unable to get the results I was able to get at MSK but he didn’t administer the nerve blocks the same way either. And then there was billing… For “outpatient surgery” which it was not, never has been or ever will be. Well the last one I can’t know for sure. I don’t feel like going over it again but I will tell you that when “they” over bill you, tell you to talk to your insurance company, your insurance company says that’s not correct, hospital continues with “talk to your insurance company” and won’t let you talk to supervisor, it’s time to file a complaint… with the attorney General of Massachusetts. It took a few months, but I received a call. She was apologetic for the long wait time and very supportive. She could not help but referred me to a few Medicare law firms. I said “fraud“ and she replied, yes. By this time I was out of steam, in pain and resigned. But she told me I had initiated a file on MGH and people could add to it, eventually igniting a lawsuit. OK, I guess that’s something but then in January 2024 my balance at the hospital was wiped out. Shortly after, every single payment minus one small fee was refunded. I’ll take it! Fraud is rampant especially when it comes to Medicare. Hospitals don’t like the payments they are given but they’re also overcharging. The system is severely broken and I’m not going to look for answers. I’m just gonna take the win and walk away.

I did inform the pain management doctor and he got me back on the schedule a year later. It didn’t help much, really it was mediocre at best. I went back one more time – his demeanor changed. If I didn’t get 80% relief for three or more months, insurance would no longer cover nerve blocks. I need them every six weeks but it has been several years since I’ve had quality treatments and my pituitary endocrinologist really does not want me having steroids of any kind. My adrenals are always at risk. Plus he said, “we’re done, this bucket has overflowed. It’s time to move onto a new bucket.” Seriously. Bucket this and bucket that.. Just stop. 

After waiting over a year to see a small fiber neuropathy neurologist, he simply told me that small fiber neuropathy was a “garbage can diagnosis” like fibromyalgia. What!? Unlike fibromyalgia which has no test, SFN has a VERY DEFINITIVE test. I have had my nerve fibers biopsied and counted! Pain management based EVERYTHING on the fact that I had SFN. Who’s right? They want to be able to say that I have an auto immune disease but no one has tested me for everything. He did. This doctor went with $9000 worth of blood work! It wasn’t that many tests. Why is it $9k and it showed zip, zero, zilch! I told him I had nerve pain and like so many others he said how do you know it’s nerve pain? Buddy, I don’t have the energy for you. I had to go in for muscle testing, an EMG. Wait over a month, go up to an office in New Hampshire, wait, have a 15 minute test. He says huh, your muscles are healthy. Oh are they really now?! I already told you that. My 48 years of experience in this body and 28 years of doctors, I know my body. Billable event, sure. He made up a diagnosis with the treatment being IVIG. This was the original treatment I was told back in 2019 by the neurologist who diagnosed me in New York. Back then I would’ve been more open to it, but now, after all this Covid nonsense, and the fact that it is made up of thousands of peoples’ proteins, then administer immunoglobinby IV, once a week, for 3-4 hours for a minimum of four months. But study show that 6-12 months are better. $40k/treatment… of course it was denied by insurance. I didn’t even want to submit to insurance but the outsourced firm had a nurse doing the paperwork and she said “he’s a wonderful doctor and you should trust him. No harm in trying to get it covered and make a decision later.” Whatever. They pushed very very hard for me to sign paperwork to allow them to keep fighting for approval. No thank you. Besides other people’s “decisions” being run through my body, the number one side effect is headaches. If you know me, the very first and ever present symptom has been headaches! The nurse was a bit concerned but said they would make sure I had Tylenol. Are these people even listening? Even if Tylenol worked I wouldn’t put that poison in body.

So I move on to the next appointment. The first took 18 months to be scheduled and months later this next one took 8 months.

In August, I finally had autonomic testing at one of the North East’s few automatic labs (honestly, in the country). Of course there’s something wrong. But my SFN has gotten better in my ankles but not my thighs. Sunlight and grounding is slowly healing my mitochondria! Mitochondria is everything. You can’t make this stuff up. You also can’t make up that I’m not allowed to talk to the testing physician because I saw that idiot, SFN neurologist who did not recommend autonomic testing. That is the very short answer. It did show I have several dysautonomia diagnoses. I will address that with grounding and light. Winter coming is not going to make this easy. Are you curious what a tilt table, hand/feet sweat test, breath test and other monitoring costs? Over 10k. Thankfully when Paul started his second job since moving back, we decided to add me to his insurance. This makes medicare my secondary insurance which basically pays my portion of the bill. So the monthly cost for having two insurances has been beneficial. Any bill is still cringe worthy but tolerable. My mind reels at the absurdity of the pricing so as I am exiting this whole centralized medical nonsense, as best I can, if not completely, I choose not to think about it but people should know.

Centralized medicine is a racket. Decentralized medicine is first an unlearning of all the wrong medical things we’ve been told. I wish somebody knew about this 20 years ago, 10 years ago and then shared it with me. It’s very difficult when people don’t want to listen to what I have to say because it shakes up their belief system. They don’t want to give up packaged food that says vegan, they don’t want to give up packaged food that says gluten-free, they don’t want to eat protein for breakfast. I didn’t eat breakfast for more than 30 years. If I can do it, so can (just about) everyone else. I don’t want a pill prescription. In fact, any new drug I try has gives me an undesirable reaction. My body has said no, nope, never again. It is aparent on my face with everything I eat, smell, come in contact with… no, not an eye roll! My skin is blotchy, bumpy, broken and inflamed. Wear that designer perfume and watch my skin flare. Some of the medication‘s that are for sleep and for neuropathy (3 meds) that I cannot come off of as of yet (but have cut down), have started coming in different colors. Dark or bright colors… they smell of oozing chemicals. It’s on my hands even though I only touch a pill for mere seconds everything changes. My internist is an MD but he’s also a Quantum Practitioner. His answer is light and grounding for everything (he’s right). My body is very broken. He’s helping me remove things but he’s also careful. I learned I simply needed to tell the pharmacy that my pills need to be white or as light colored as possible. They put it on your file! It’s already a thing! I am not crazy and I am not the only one being poisoned by these additives. Other people might not feel it but it’s affecting their body too. 

The more I can remove of centralized medicine, the better I do. It’s been a very long two years. 

name painting

By way of art, I attempted to join in community art guilds. Not what I was looking for is an understatement. I’m remaining in one, Newburyport Art. I donated a painting to their Charity Auction this past September. They are a nonprofit and it brings in one third of their income for the year from this event alone. I did an artist talk and volunteered as an art runner at auction. It was a learning experience to say the least. I learned things that I would ask before donating again. My list has grown as I reflect on this experience. Although volunteering at the auction was great fun and it introduced me to some lovely people it also left me deflated. Since I was a contributing artist and a volunteer, I understand what happened. The artists that were not there and were let down by bids don’t realize it wasn’t their work but who is “Newburyport Famous” which could simply be handled differently. I am having a meeting with the head organizer (she canceled as of me getting this post up so now I wait for a reschedule). If nobody speaks up, nothing changes. There are many people who won’t donate again. I’d like to think that speaking up might change things or they can correct their errors. When people have a lot of money to give they raise $100,000. From ticket sales, raise the paddle (which is just giving money for free without taking a painting) and “famous people.” There were a few surprises of the night, which is wonderful for those artists. But we have to be the change we want to see in the world, right?! …my painting, “Sweetest Peaches” did go to a good home. Shipped the next morning to Washington, DC. 

I’m going to continue with Newburyport Art for another year and see how I feel. I like putting my things in the shop. It’s “lightly juried” and only for small items and happens seasonly. It’s nice to see what people purchase, where I made an impression and what missed the audience. I’ve also had any and all types of art in a local shop that’s just a five minute walk away. It’s just fun! And the owner is a wonderful. Someplace I can go and enjoy conversations for hours… which is never the goal but it happens regularly. Also, summer of 2023 my friend sent me a blank art journal she made and encouraged me to try mixed media… God bless her! It has sent me in a whole new direction. I never would have tried without her encouragement. I have filled three of her generously gifted journals. I’ve been playing with pressed flowers I’ve gathered from roadside stops and another with my maternal history with lots of vintage goodies from my grandmother. I’ve just about finished one on my paternal family. Memories are such a wonderful thing. We should take time to revisit them often. I did a mixed media self portrait! I enjoyed every aspect of it. I’ve created so many pieces now that I just keep gathering ideas and new things. Creating is my happy, joyful, calming, enriching place. 

Lastly, I tried a part-time job. I saw a plea for help with a Prolife organization …really half of the founding couple. One person. One on one. A 2 1/2 hour conversation, a small stipend quarterly and some guidelines and I was off and running. I branded her Instagram account, helped it grow and gained praise for her because of high quality content and appearance. That was what I was brought on to do and I did it. The official nonprofit, funding women who don’t want an abortion, is impressively complex and well organized. The social media aspect is an outside fundraising factor. It is not well organized. The disorganization that left me hanging was mentally and physically draining. This is where I hoped a little part-time/volunteer job would be proof to myself that I can take on more. The first six months were wonderful and fulfilling and I was an active participant in the Prolife movement but as we continued the disorganization became worse due to a number of factors. I was not one of them but my health took the hit and I started declining. I battled with myself – I want to help this movement but this is not working. I have no space or energy to do anything else. I need to stay. I need to quit. My head was spinning. I resigned just short of a year and she said “OK, thanks for your help, feel better“ and just like that it was over. Well that was anticlimactic. But I did meet some wonderful people and one, almost local. The kind of friend that calls a few hours before Massachusetts Citizens for Life Gala last month and says I ended up with 2 empty seats at my table, wanna come? I had been sitting on the beach and thought, sure I can do this! I needed to get a hold of Paul! He was in and we had a wonderful night. Met wonderful people, in person and helped an amazing organization.

I always seem to start with a negative and that’s summing up two years as edited as possible. What have I done that’s happy, joyful, relaxing, revitalizing, life chaining? Lots! I go to the beach as often as possible. If Paul is working from home I go alone, a day off, a weekend, we just go. 20 something years without a car is starting to really starting to drive me nuts but even when the car is here… do I use it? Im trying! A 30 minute drive to the beach in New Hampshire and everything is better. Even when it’s cold and gray. Hours barefoot in the summer to 15-30 min at 32° and I feel better. I need to restore my mitochondria. It’s possible. It’s hard when I love the Northeast but I need stronger sun all year. Things to work on but there’s always things to work on! Hoping this post leads me to share about all I’ve learned and what I am learning as I go through the quantum lens. Maybe I won’t spend the next 40+ years sick and tired.

Some photos for all the beauty in my life. Always Paul. We celebrated our 20th anniversary this past January. From beaches in MA to NH and ME. For sun, grounding, and searching for treasure in all kinds of weather. Boston and Newport, RI and galleries here and there throughout New England. Always remaining and reminding myself to be grateful.