Tag Archives: medicine

Learning pain.

I learned from my family to hurt myself with food. I watched binges and holiday gorge fests. When I participated, I unconsciously registered and catalogued what things felt like after the meal, never quite understanding fully, the meanings behind certain painful moments.

I never knew the pain in my stomach was my body screaming at me to stop, because no one else in my experience was showing pain or stopping. I thought it was supposed to be that way, that is, until it was already a very hard to break habit. Now I do my best to listen for sensations before my tummy hurts. Not always being successful. I also do my best to eat foods that give “full” sensations sooner, because then I know I don’t get too close to that mark. Salads are very filling because they trigger a feeling of full long before your tummy runs out of room (they condense a lot in the chewing process and they are dense nutritionally). It leaves room for a little treat and still no danger of overeating pain. These days I aim for a few coated nuts or a bit of fruit, but being holiday season my daughter kindly made pumpkin pie using ground nuts for the crust. Vegan, and made of healthy ingredients for a small treat. It enables me to feel human and enjoy a morsel safely- thank you Anya. Growing up, my family had a ready supply of tasty treats from Little Debbie, Hostess and my mom’s own baking. It left for multiple servings a day, nearly every day for the first 19 years of my life. Now, I have an apple or pear mid day and something like Anya’s pumpkin pie (or the coated nuts) 3 to 5 times a week most weeks, with some heavy weeks and some empty weeks. Money doesn’t always stretch enough for sweets in our budget, but then sometimes bad habits not fully broken, sneak in and disrupt the balance for a bit. It’s a difficult cycle to maintain balance when I learned from an extreme environment. So I keep working at it.

Additionally, I never knew the pain in my brain and head, and resulting dizziness and depression, was too many omega 6’s from grains, and allergic reactions causing systemic inflammation from my immune system attacking my entire body. I just knew I couldn’t complete sentences, couldn’t keep my balance to save my life (so I seemed clumsy), would hit angry rage easily and then fall into deep despair, and alternated between sleeping all day and suicidal pretending to be functional. It was a daily cycle pattern by highschool. My thyroid was storming and crashing repeatedly, and my organs and joints were being eaten by my own immune system. Yet all I knew was overwhelming pain, hurting everywhere inside and out, and dibilitating misfunctions in my whole body. All I felt was dark despair and deep desolation. All I knew was something was horribly wrong and mom’s doctors weren’t fixing it because I was “low side of normal”. Later in college it was the same story with my daily cycle and unhelpful professionals, basic tests and no further exploration. It took me learning overlapping parts, investigating complex systems, and having many helpful intuitive moments with others’ conversations to find my answers over years of time. It isn’t something I started yesterday and I get really frustrated when people act like that, it is not something a 15 min conversation will solve, because I have enough hours invested to have been a collegiate course. Sadly, if it weren’t for a resource that tells me otherwise, I would think I know more, and more current information on the subject, than anyone else in KC, and because of it have been told by doctors it’s too complicated and to difficult to solve fully. It isn’t true, there are those that know more and can. Problem is that the few here in KC that really know it well, are out of reach for me for several reasons, insurance, finances, and waiting lists being the most common reasons. The last time I tried it was a doc at St Luke’s and I was passed to a minion that knew less than me. It is crushing to save $280 for a doc and then be shuffled to his PA that says “how about we start with a TSH test” when I know how to read thyroid labs and know a TSH test is a far too limited view  when it is the only test run, that your TSH can look relatively normal and all kinds of wrong be happening.

I would love to say that because I chose to learn what to know about the process happening in my body, and thus have skills and knowledge others don’t, that I know how to solve it. I can’t because, that’s a trick question. It’s a trick because there are to many variables. Da da duuuunn!

I know that diet is a major factor. I suspect some of those learned pain moments from childhood are the mental root of the physical patterns causing the physical pains. I know physical triggers are contributing to the immune response, and that when eliminated, my immune system calms down, but never seems to shut off completely. I know that my organs are damaged because of approximately 38 years of this process. I also know that with enough space, time and resources, literally anything can heal and many people have done it. Yet, my life seems hell bent on making it nearly impossible to eliminate all triggers and stress. I also know the CVid  set me back painfully far (just not as drastically noticable as Nathan), and seemingly made even more triggers arise. So at this point, I have new factors that didn’t exist 2 years ago. I have had to adjust everything multiple times up, and now I’m faced with having to adjust back down. I’m having difficulty finding middle ground with thyroid meds, supplements and food choices, each adjustment causing a ripple effect with the other elements. I’m having difficulty turning my immune system down enough for healing to continue. So, I know there are new factors, but at this point it’s easier to say what’s okay than what’s not okay. The okay list is so short already I just can’t figure out why my immune system is constantly on high alert. So the mechanics are there, and have been being used to the best of my ability and fairly detailed knowledge.  But where I used to keep symptoms away for weeks even a couple months at a time, now I’m having daily and weekly swings even when doing my absolute best with life circumstances. My lapses get fewer, smaller and father in between each week, yet my immune system never relents. I am managing massive inflammation daily to stay out of the crash loop, and eating cleaner than ever. I’ve had two known noticable lapses in 3 weeks, and one of those was completely out of my control, it was not even close to my fault. That leaves me to believe that either I have new allergens unresolved/identified, or that I am in the midst of a constant external pathogen attack. I simply am not certain which, and have no resources left to determine that with in depth lab testing. It could be covered in-part or all, if I could afford and actually schedule with one of the few very knowledgeable doctors. Some of them don’t take insurance, the others have wait lists and underlings.

Now, on being able to keep most of it at bay with diet. The failures are when I am unable to control the food in front of me. I have yet to figure out how not to eat when others are, and every dish has something to avoid; or when the only dish was prepared haphazardly; or gifted/shared by unaware individuals. Nearly all of my exposures lately have happened in situations beyond my control and which I felt I had very limited or no options. Fortunately, the office holiday celebration had the ability to do a salad with beans. But the other big gathering we attended, every single dish included something that wasn’t okay. It’s really hard not to eat when 75 others are, and your tummy says the food smells delicious, so I did my absolute best, which was still very far from my clean. Then I went a stretch where I just ate salads, one after another after another, and then my body signaled true starvation with tremors instead of using the fat on my belly and thighs. I had gone too far the other direction, but what to eat when you start to distrust anything working for your body?  I’m running out of creativity with other veggies, and I’m still not sure if one of my few is causing my inflammation immune attack. I should be able to eat more easily than this, and so, fasting is still a thing because it’s just easier and helps me clear out and detox some.

You might be getting the gist of all the layers and levels I’ve been trying to juggle. In the midst of Nathan’s dialysis, 7 months of increased duties at home, and resulting over-stored grief. Of all of that I was lone massage therapist for all but two months- helping many others solve their problems muscularly, and working diligently on 2 major art images. I don’t know I may have missed some things, cues that might have helped, or maybe it’s literally just the stress.

Stress is the ultimate trigger of all triggers.

So to that end, my new goal is to stay as clean as possible and still consume calories (you’d be surprised how opposing those 2 are right now), while making a concerted effort to reign in stress better. My goal is to use as much of my lunch break as possible to do yoga. Every day. That is 3 breaks a week. Eating a salad takes me 5 to 10 minutes based on size of the salad, and adjusting my office takes about another 5. My breaks are usually 90min. So most of those days I should be able to do a little over an hour of yoga. Fridays, being a shorter work day, I usually have at least one solid 30 min break, and even though I get to leave early, I rarely get to make use of that time for me. So the 30min break will have to do for yoga. Hopefully that addition to my week will be enough. My problem is for the last 2 weeks I’ve been doing other self care in my lunch. Some of that will have to continue elsewhere. Where?

So yeah, no easy fix, and why in the hell anyone would think I’m undereducated or a slacker is beyond me. You’d think they all know that by now.

So yes, this week I have struggled with my baseline, and when a full blown allergic reaction to an unknown cause caught me off guard, I fully crashed to suicidal level. Nathan and Anya took the brunt of my verbal onslaught, because the reaction set in fully after littles were sent to their rooms for a bit. I tried to lock myself in the running van in our garage. Nathan and Anya solved that and waited for enough sanity to return for me to be coaxed to bed. I’m not proud, I’m not happy over it, it sucked. All I kept thinking is I could finally be free of this constant struggle to maintain balance, that I would finally be free of all the stress and responsibilities, that I would finally know what my inner being fully feels like (Abraham swears is better than the most exhilarating ride of your life.) I just wanted to not hurt anymore and not have to think about anything: meds, money, food, allergies, eating, living, stressors, you name it, I’d be free. It was just so overwhelmingly desired in that moment. If not for Nathan and Anya I would be dead.

Like Great Mother, this momma’s had enough. Enough is enough, and I’ve done a hell of a damn good job all on my own all things considered. I deserve out, and if God wants me to live so damn bad, then he better damn well fix it. There isn’t much rope left and I’ve gotta save enough to solve the last problem I’ll ever face, and I have no idea if my proverbial rope can be replenished. If it doesn’t stop in a permanent sort of way, I will likely still wind up back at this place. It is a flaw of human nature and the complexities of life on Earth.

For now, I’m alive. I didn’t solve anything today, but I have an hour left until bedtime and nothing got worse.

I still hurt all over, but less painfully. I’m still depressed, but more towards mild melancholy. I have a headache, but it no longer feels like my eyes will explode. The dizziness has subsided, and I have been able to communicate more than last night.

I’ll take it.

Those are all signs of improvement for this day.

May you be kind to yourself when your best doesn’t cut it. May you know you did your best with every step even when people don’t see it or doubt it. May you always have the resources and connections to do whatever is needed, especially when that involves investigating complex problems. May you find a way to eliminate as much stress as possible so your body can heal. May life cooperate with you in regards to all of it. May you find a way to make maintaining balance easy, and be able to easily fit that into your schedule. May you always have reliable current information available to you when it is needed most. May you find the solutions you seek for lasting permanent change and easy balance. Above all may you know that the divine loves and supports you in all that you do.

Om Shanti

Self-study

Right now I’m taking a short break to wash sheets at the clinic. My brain hurts.

I decided that even though I can’t afford med-school, especially knowing I would argue with teachers frequently, it doesn’t mean I can’t learn what I need to learn, to help Nathan.

He’s struggling again, and needs answers, and I’m determined to make it happen one way or another. So I started with texting his nurse and reading textbooks at my easy access.

At work I have a whole library of medical compendiums at my access thanks to 3 chiropractors, 2 current and one retired.  I started there with “Grey’s Anatomy”, not the stupid show. I’m now on to reading all applicable areas of “Medical Physiology”.

I’m certain I stirred up a rats’-nest with the DaVatia clinic, but the first doctor to get a clue and do their job right is spared if evidence does point to any applicable malpractice moments. Hopefully the DaVita doctor will be that saving grace, she seems nice enough.

I have plenty of books to read (see below) and if all else fails I can go down to UMKC and browse their medical library. I will find out what I need to know, one way or another. It’s too bad that I’m having to play Susan Saradon’s part in ‘Lorenzo’s Oil’. That movie was made in 1992 based on a true story from prior, yet here in 2021 there are still moments where the family cares more than the doctors.

So this is the library at work:

If I don’t find my answers there I will navigate UMKC. Somehow I will find answers. I just hope it it on time to prevent worse trouble for Nathan.

May you never have to battle for proper care. May doctors always do their best to help you. May you know that you are being cared for properly. May you have all the resources you need and find a way to make things right. May you fully understand every challenge in front of you and find solutions easily. May you always be heard and understood. Above all may you know that the divine loves and supports you in all that you do.

Om Shanti

You get what you attract.

My husband’s focus on and help of BLM, has attracted himself racist doctors.

They displayed black-man-on-medicaid syndrome.

It doesn’t matter that society has poisoned the entire race for centuries in toxic attitudes, hate campaigns, and even poisoning their water and food supplies. No, all of that hate, only led to disease that has afflicted so many of them that they are now overwhelmed with a race of diseased people. They start turning blind eyes on the details and glazing over moments when those people are trying to tell them something is wrong or symptoms that would help.

It wasn’t until I showed up in scrubs and lost it on them using language they understood. It wasn’t until the educated white woman stood up for her spouse demanding answers and solutions, that they started listening and actually started to fix it. He went from 3 months of failing adequacy to passing it in one week.

That is wrong.

I am just realizing the intensity and weight of this situation.

My husband was being shuffled off as an ignorant black-man-on-medicaid and not worth their time and effort to manage properly.

My husband, my love, my college-educated smart, intelligent husband. My husband already knows what discrimination looks like, he has had that his whole life, and he’s spent decades fighting it and doing his best to prove them otherwise.

But when your life depends on someone else’s technology, medicine, and prescription, it is the last place for discrimination.

And sadly I know he is not alone. He is not the only one going to that clinic. He is not the only one being given that treatment.

It is wrong.

But if I fight this matter I worry that I will attract more of it, both literally and figuratively.

You simply get what you focus on. My husband’s only mistake was the focus given to fighting discrimination. His focus should have been on equal rights and equal treatment. His focus should have been on total equality, fair, equal, balanced, equality for all. They wrongs are done and past, and we all need equality in every aspect of out lives. But we’ll never get to the equality ground if we keep focusing so intently on what still happens too often.

Luckily, when I had my meltdown, it was with one person that had actually cared for a family member of hers, on dialysis. I realize now the turning moment was when, I was crying talking about having to call an ambulance while I took my kids to the neighbors, and followed in the next breath with if you kept waking up at 3am to your husband in trouble you’d take less than 3 weeks to fix it. I snapped her out of black-man-on-medicaid by tugging on her emotional connection to her family.

It is sad, but true.

I don’t want rath, I don’t need punishment, I just want the system to change and stop hurting someone I love.

Medicine has hurt me, my parents, my brother, and now my husband too. Enough is enough.

I want better. I deserve better. I deserve healing for everyone in my life. I deserve a medical system that actually cares about people. First do no harm was lost long before it ever actually mattered, and no one seems to care to get it back.

May you know how to attract better into your life. May you never see the touch of discrimination because we actually truly live equally. May you understand we are all in this together. May you understand we all deserve a choice, and we all deserve treatments that actually work. May you know that above all the divine loves and supports you in all that you do.

Om Shanti

*stock photo from Pexels library

Echo,

Echo, Echo, Echo….


Last night my husband and I took advantage of a digital doctor appointment to get set-up with Medicinal Cannabis Cards. Only a couple of minutes in, the doctor stated “Insurance and Medicine don’t cover tools that heal.” I heard an echo, and Nathan laughed looking directly at me.

She referenced several tools, which I have been attempting in vain to align myself with the resources to accomplish, for myself and my family. She then proceeded to talk about the different elements of medical cannabis and which bodily systems and functions they affected to enable better functionality. She broke down the different CDB’s and terpenes and even the variations of THC and how they affected the body. I was already familiar with some of the data and information, but she gave charts and graphics that really helped narrow down our particular needs and expand our knowledge. I am very appreciative that we will soon be able to access a much more specific array of cannabis tools to help regain health.

Now if I could just get the resources together to do the I-V Oxygenation therapy and even potentially I-V Nutrient therapy for myself and my family. I don’t know how, but I know I need the universe to really cooperate with me.

See 11 years after Nathan’s original diagnosis, and 10 years since our health journey began (& 7 since I got intensely serious), we are still struggling to show success of any kind, and short resources that could potentially make the difference.

We trusted a system that was intended to be a safety net for both the patient and the medical provider. We were told by the hospital, that Nathan was sick enough that we needed to apply for disability to ensure he got care and the hospital got compensated.

We fought and fought. We gave up briefly, then fought some more.

He is finally classified as disabled, but we only got $560.00 in SSI and not a stitch of disability thus far. The lawyer claimed $150 of that and the hospital still wants us to pay them the $110,000.00 we owe them. His student loan is a mountain of paperwork away from being a headache though, not that anyone cares to help with that either. And his recent new diagnosis of Kidney Failure, a different hospital has offered to do standard dialysis, and they are helping him get set-up with medicaid.

He’s gotten more input from the Acupuncturist at the clinic than his team of medical professionals put together.

I have stated the following, many ways, in many posts, but feel the need to reiterate.

I can only speak for the American medical systems, as that is what I have dealt with for a decade.

There is no safety net if you really need it. There are just a lucky few that manage to squeak past all the hurdles and loopholes to actually get what the system promises.

&

They want you to stay sick, because if you really can’t pay, eventually the government will one way or another. See that $110,000.00 we owe to KU Med, if we never ever pay, eventually they will completely write it off, and the government will give them concessions on their taxes. They know that. But it will continue to haunt Nathan’s credit report for as many years as they can drag it out. Tell me how that is okay!!!!

Bonus: if you stay sick, they keep making money on treating your symptoms, regardless of how expensive of a process that may be. There is no incentive for them to get you well. Again, how is that okay!!!!

But I am just a disgruntled bitter person wanting my health back from a disease that they could have solved 80 years ago if they had really want to. They don’t want to solve viruses, because they make too damn much money off of them, and doctors toe the line instead of standing up for what is right and healing their patients.

In July of 1946 the World Health Organization or WHO defined health as:

Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

Tell me how Covid or Epstein-Barr or any other chronic virus, being allowed to run rampant, is creating health for anyone, especially our entire society. Tell me how shutting down society for a year, causing businesses to close, and people to loose homes and jobs, knowing full well that Western Medicine has no real solution for any virus, is enabling our world to find Health.

The WHO had no problem breaking their own goals of promoting health to try and “STOP” a virus, but they also have no problem enabling insurance companies and medical institutions to keep ignoring the real problems and the potential solutions right under their noses. Because the solutions make less money than the symptom treatments.

I am furious right now, and it has been directed at god more than a couple of times the last couple of weeks. This shit should have stopped 40 years ago, but just keeps being perpetuated by old greedy mostly-white bastards, and the rest of the population just lets it keep happening because they refuse to educate themselves and join forces to make it change. There will be no solution to this mess ever if that doesn’t happen. You can’t find a solution if you never try.

If you just wallow in the problem and throw your hands up in the air as “they said it’s all we have” then that is exactly what you will continue to get.

As for Nathan and I, we are doing our best to move towards our own individual solutions as quickly as possible. It does mean I have been extra extra busy and am now writing less. Please keep us in your prayers that we find all the solutions and resources we need.

May you have the solutions you need. May you know exactly what to do. May you see the falacy of things that will not help you. May you find a way to keep progressing towards better. May things generally start to get easier for you. May you know you have your health under control and stabilized as much as humanly possible. May you always have supportive medical staff. AND above all else, may you know that God loves and supports you, even when it seems otherwise.

Om Shanti