A lot of you have asked me recently about my herbalist path, and a lot have asked what all I've been doing with Steve. I'm pretty slow to share a lot of our process because I am still a student and am still learning, and what I use is particular to Steve's case shouldn't be anything used across the board. I will share some things, but I want to do one VERY IMPORTANT note before I start.
In herbal medicine, it is important to research and understand contraindications. For example, Steve is on pain medication that doesn't mix well with all herbal medications, as well as his kidney and liver are compromised so we pay attention for anything harsh on them, he's on blood thinners because he has a PICC line so if an herb thins your blood he definitely shouldn't be taking them, and even more subtle things such as Steve's history of extreme water retention, means he shouldn't be taking herbs like licorice. This is why I'm not always shouting out our herbs, because the more complicated your situation, the more you truly need to customize what you're using.
With that said, when doctors tell you, there's nothing else you can do, you will begin to try anything. I know that sense of urgency, and it's probably the reason I've failed so many times at getting Steve's stomach to work. Until I began to attempt herbals, I hadn't adopted the number 1 key principle. One thing at a time. When I was trying to introduce Steve to food, I didn't make him complicated foods per say, but I wasn't doing just 1 thing at a time. So here is a short story, now that I gave this VERY IMPORTANT preface to the story.
Steve's first hospital visit, ended in an emergency tracheotomy and his first lung infection. Steve battled UTI's most of his life, so because of modern day living with antibiotics in food and his history with antibiotics he already started with a slight resistance to antibiotics. When dealing with an illness like ALS you are susceptible to the big bugs! So we started with Pseudomonas and MRSA. This was in March 2013. Fast forward to 2015 when Pseudomonas became colonized and Steve would have as many as 2-3 active infections at a time in multiple areas. By this time Steve had already been diagnosed with gastroparesis, gotten down to 67 pounds, and was placed on IV nutrition that started his weight gain to his 150 lbs and IV antibiotics for months at a time.
In 2015, I had a dear friend introduce me to Ayurveda and it began to change both of our lives in incredible ways. The most important take away was in how food is medicine, and I knew someday I would get Steve's stomach to tolerate food, so I started studying nutrition and reading any book I could get my hands on. With little success with foods at this time, we started some light teas that had no contraindications with Steve; things like Ginger, Eleuthero, mint, and Calendula. I began using Calendula on some fungus issues the years of antibiotics caused (finger nails, feeding tubes, legs, toe nails) & started using turmeric on them also. I didn't venture too much further away from this, and the sporadic failed attempts of food. These little things helped, but come mid 2016 we reached a wall.
Steve was officially resistant to antibiotics, they weren't touching his infections, they were spreading all over, his body was deteriorating literally inside and out, so Steve and I decided okay we are at a point where we have to go further into the herbal world. We are fortunate enough that because Steve is on IV food, we have an incredible pharmacy and nutrition team that follows Steve, and that means weekly labs. So I decided we start with one thing a week, and if his labs stay positive we keep if, if they got negative in any way we stopped it. This triggered the same journey with food. I started with 80 % water and just lentils, and when he tolerated that, I would get the consistency to 50/50 (it's still that watered down), and when he tolerated that, I added one thing at a time. If you follow my instagram stories you know I give him up to 7 ingredients at once now and he tolerates them beautifully!
That same slow process with the herbals during the same time has gotten us to present day. Steve's hemaglobin is up to 11, when he's spent years at 8 as his norm, needing transfusions every 2-3 months (when it's below 6) to only able to raise up to 10 for just a few days after a transfusion. He's infection free. He had that small hospital visit, where he was finally able to respond to antibiotics again.
We are also healing a wound. If you've followed our wound story, you know we've been hit with several set backs; mostly associated with hospital visits. Half way into this wound journey, after speaking with a wonderful wound care nurse, I started making Steve my own medicine to put on his butt. It's what I've come to call green calendula oil/salve/honey. Now I'm sure I'm not the first to use the two power house healers of marijuana and calendula together, and I'm also sure I'm not the first who waited to talk about it until after our state finally approved it's use for ALS patients. What's up big brother. ;)
I use this salve on his feeding tube, trach, and his wound. All simply because these issues were left to us with, "There's nothing we can do" on the medical end of the spectrum. So, we went there, and with the same patience this all has taken, we are seeing results on healing.
I want to state, when you start to build up stride in a routine, it's extremely hard not to let a set back discourage you. It halted our forward progress many times because we would be so discouraged, so don't beat yourselves up if you find yourself feeling bummed. It's frustrating, but truthfully it's ALS. Even us healthy folks catch the common cold here and there. :)
So if you needed the nudge to educate yourself, here it is. Please remember, while there's magic from the earth, you do need to understand how everything interacts. If anything our journey taught us that if you search you will find a team of doctors, nurses, pharmacists, nutritionists, etc that will be a sounding board for you. If you don't have one right now, don't get discouraged. Three doctors told us that Steve was dying and they wouldn't help him when he was going through the gastroparesis, needing a doctor to follow us for IV phase. Had we listened to them, we wouldn't be here today. Not to say you still won't come across the doctor who comes in and says, "There's nothing we can do," in fact you might reach that point, with all; but if they are truly invested in your care they will support you as you journey into the natural medicine world, like ours has.
So with 2017 being the year of truths, here it is, but it's also the year of education, so I wanted to assure I wrote this blog in a way, where I reminded y'all to do your research before you add anything. Truthfully even if someone tells you, unless they are educated in the area, I would do your own searching. I've fallen into listening to others suggest something, and we use it assuming it's innocent to discovering it causing other problems. Simple example is aloe. I used it on Steve's feeding tube because his tube leaks stomach acid leading to burning his skin. Well, aloe mixed with Steve's situation caused a yeast infection. Who would think something that innocent would create any kind of problem, but it did. So do your research, I can't stress it enough. :) Most importantly though, NEVER loose hope. :)