The pain was bad last night. I hate when the pain is bad throughout the night. I wake up a lot and don’t sleep well. I tried eating four eggs yesterday and it did NOT go well. That’s the first time I’ve tried to eat four eggs at in one day since before Feb 15 or thereabouts. That’s when I left for San Diego.
I thought since because I had an extra visceral massage on Sunday that maybe I could get away with it. Also, I was hungry! I was super hungry yesterday which is always a good sign. Today, no appetite. Don’t want to put anything in my stomach. I should have done two bags of IV fluids yesterday - that would have helped - but I ran out of tubing and had only one left. I wanted to save it for TODAY’S visceral massage with Caroline. We discovered that if I give myself a bag while she works on my belly then she’s able to move my tissue more easily and open things up.
Visceral massage, if you’re wondering, is when specially trained massage therapists move the intestines around by massaging the belly and the back. It can be very subtle work - they are trained to know how to “pull apart” the intestines that are sticking together most often due to post-surgical complications. Sometimes people that have never had surgery end up with something called “adhesions.” We all have them to some extent but people like me have a lot. The adhesions are when the intestines are sticking to each other or to other surrounding tissue and causing pain, digestive problems or other problems.Because my small intestines aren’t where they are supposed to be, they get stuck to each other or the surrounding tissue ALL OF THE TIME. Scar tissue is a REAL issue after abdominal surgery but the mainstream medical world likes to pretend they don’t exist. I had a couple of docs straight up tell me they don’t think that’s my problem.
I lost my cool with one. I wrote her back in the ecare site: you can not definitively make that sort of statement without verifiable proof! Other docs say it under the breath: you know someone that’s had as much removed as you definitely has some scar tissue. (UH YEAH you don’t say?)
Anyway, for anyone that’s interested, Marty Ryan who owns, Love Your Guts, has trained people all over the world on a special type of visceral massage. I go to mostly his disciples. I was fortunate enough to have him as my practitioner for the first year and a half I was in Seattle. He taught me a LOT. He went over my chart and explained what probably happened. If it wasn’t for him and this treatment…I’d be in so much more pain and clueless about why.
I’m very concerned about the fact that I can’t up my eggs beyond three per day. I can try to do two in one more, wait a few hours and then try another two in broth as well. But my goodness, this is getting terrifying. My weight hasn’t fluctuated much! But my shape is definitely shrinking. I’ve always been someone that gains and loses weight and still looks proportional. This has been a good thing when I’m on the heavier side! I’m only five foot tall, so even a few pounds can be noticeable.
My shape has been changing though. I don’t know how long I can continue this. But then I think of concentration camp survivors and the lost boys of Sudan who trekked across the desert (very interesting to read their memoirs, if you’re interested in that sort of thing) and I’m reminded of how resilient the body is.
The problem is: they weren’t trying to stave off cancer. I am still getting the weekly IV bags of vitamins. I’m working on finding a cheaper way to go about this. But my new GI doc that I really like wrote me recently and said he is getting “pushback” from getting me into the bigger GI clinic. They are saying they need a primary to oversee the nutrition / possible TPN (nutrition through the IV which bypasses the gut).
The problem is: I haven’t been able to find a primary doc who will oversee this!
Even the primary care doctor that was $300 per MONTH said she wouldn’t oversee this! She even said she wouldn’t submit labs! The whole thing is SO MADDENING. I knew it was going to get bad fast when this administration started but even I’m in awe of how quickly things are going off the rails. The system is so flawed and with the population growing, and people getting sicker…I just don’t know how it’s going to play out.
I keep reading about measles outbreaks and I think of the article I read a few months ago about how our hospital systems are not prepared AT ALL for any sort of disease outbreak. They don’t have enough quarantine sections in hospitals and the protocols aren’t in place.
I’m not sure if our medical system will collapse from an outbreak or if it will be a slow, painful death. We are definitely in sketchy waters. My dad and I are very compliant patients in a blue city in a blue state with supposedly some of the best healthcare in the world.
And it’s failing us. My concern now is figuring out how to ensure I have access to the resources we need before things get worse. Every day, I feel like the clock is ticking louder and louder. I read about other strange things happening in the medical world. I hear from friends that they are experiencing different things.
Sometimes I hear of things being handled correctly which gives me hope! But shit. It’s all so disturbing.
I don’t know what to do next. Sometimes I feel like I keep getting tossed fire torches and I’m trying to figure out how to juggle them in real time without burning myself. Add in a few other stressors, a sick family member and I’m like OMG! How do I keep juggling all of this.
I woke up late tonight because I slept so badly last night. This is one of the main reasons I don’t feel comfortable trying to work for someone else. It’s all so unpredictable. I never know when I’ll have a good week or a terrible string of days.
The mottling on my stomach is back. I’m at the point now that when people downplay it, I’m like ok, if I was a regular patient, you’d think, all right, it could be a rash of sorts.
But for a patient like me? It’s happening when so many other strange symptoms are occurring that it can’t be dismissed. I do realize that the heat may make it more noticeable. However, I use my skin as a major barometer for what’s going on inside of me. It’s how I decide a LOT of things: whether I need more IV saline, or adjust my hormones. If there is redness at the corners of my mouth, that’s low B12. I knew the estrogen shots weren’t a good fit when I broke out in a rash. The patch, THANKFULLY, has been working well. I feel a LOT better.
And this is going to sound stupid that I didn’t figure this out before but when my estrogen is super low, I dehydrate faster. I only noticed the two things were synced up this winter! I mentioned it to bestie and she says, without missing a beat, well that makes sense since in menopause, everything gets drier. I’m like OMG FUCKING GD. Why didn’t I think of that earlier! No wonder I was in such bad shape during the times when estrogen drops so low! It’s those kinds of connections that a good (not even great) endocronologist could have noticed YEARS ago. But no, I’m figuring out while chatting with a friend with zero medical background.
So now I know that it’s absolutely crucial for my organ health - you don’t want dry internal organs, trust me - that I maintain estrogen. But of course, I’m told: why should we monitor your estrogen by drawing labs by a half dozen practitioners now. Thankfully, I have several people willing to run labs now. But dang! That was an entire YEAR that I couldn’t get labs. Ever since I went onto Medicare a year ago!
Deep breath. Things are progressing with my case. I have a new endo that I LOVE. I have a GI doc that actually CARES. I have an appointment with a new internist next week - same day as my dad has an important appointment OF COURSE. I have drivers now. I have people willing to help with the case. I have some leads on where to go out of state. I have to remind myself of all the progress we’ve (we, meaning my “team julie”) made in a relatively short amount of time.
I try not to think of how much further I’d be if I’d ignored what was happening in politics and focused on myself. BUT, but but, I wouldn’t have met all these wonderful people who are helping me now. A large part of my volunteer crew is from my activist work and they’ve been paramount in helping move all this along.
I also know I could not have lived with myself. It’s so important that we do everything we can to protect the medically fragile. We just don’t have the strength to do what able-bodied can do. And I can move in and out of so many demographics easily - blue collar to 1% , Jewish to non-Jewish, east coast to west coast, how could I NOT lend my voice and organizational skills to a Movement that is helping my peeps?
I had to do what I had to do.
Ok, I must go now. I think my driver will be here soon. At least I think she will! I haven’t heard from anyone yet. But if I have to drive myself today, that’s ok. I’m so grateful they are there for the new doctor appointments and when I’m wiped out later in the week.
Thanks for reading here if you are. It’s so strange how I like writing here but not thinking about whether people are reading or not. I’m just so irritated with Facebook and these tech companies. I know my website is hosted by one! But they aren’t ruining the world so….
Here I stay. It’s good to get this all out. And I dream of organizing this information for medical patients. Marty said that every abdominal patient should start receiving visceral massage six weeks after surgery so that they can PREVENT scar tissue from forming. Imagine that? PREVENTION.
Instead, millions of people suffer from bowel obstructions, pain and all kinds of issues because mainstream medicine likes the MONEY. Massage won’t make them the profits that they want.
And of course, there is the disturbing fact that the medical world doesn’t necessarily WANT us well. I had a doctor - an MD - tell me years ago at Bastyr University - the naturopathic university I went to for grad school that he had a GI doc that was sending him patients that he couldn’t help. Later, the GI doc said “well, don’t heal all of them, otherwise, I won’t have a business anymore.”
Yup. True words. If I found that doctor, I’m 100% he’d go on the record as saying that. He was brilliant and didn’t give a rat’s ass what the Establishment thought.
Then I came across this article on how “curing patients is bad for business.” That’s where we are. Caught in the web of greed and corruption.