Doc Was WRONG Part 2

I felt angry because after two decades of living with this, all it took was a five minute blood test to see what the problem was. Now I can address it.  Why didn’t anyone do this before? Now I know.

I have come to learn that a doctor or practitioner is not allowed to do a live blood test. They could lose their license and go to JAIL. Seriously.

So, not only does the American Medical Association ignore that which is at the core of all health (ALL!!), but this practice is completely dismissed. Directly from the Wikipedia page, “There is no scientific evidence that live blood analysis is reliable or effective, and it has been described as a fraudulent means of convincing patients that they are ill and should purchase dietary supplements.”

Isn’t our blood at the core of all health? Don’t we need to address the cells in our body?

https://en.m.wikipedia.org/wiki/Live_blood_analysis

Just take my condition for an example… without the live blood test which confirmed chronic borellia, I stay in my scooter with dreadful symptoms indefinitely while taking 20+ prescription medications per day. And I would continue to get worse and worse and worse.

Does this make sense to you? It shouldn’t.

 

To Give Up

Some of you can relate to this…
Alarm goes off at the crack of dawn so you can go to the gym before work. “Not today… I’m staying in bed.” You gave up for the day.

When my alarm goes off, there is no option. Just the act of getting out of bed is as much work as going to the gym. Moving around and doing the bare necessities is hard work. If I “give up”, then nothing happens.

Why do some of us “give up”? It’s just too much work. It’s too hard. Everyone can understand that. Some of us have a farther threshold than others. So don’t judge if someone has decided to “give up”.

But the truth remains… If I give up, the ability will most likely not come back. If I stop doing what I’m doing every day, I may not be able to do those things anymore. So I don’t give up. I get out of bed. I move. I fix food for myself. I exercise. I rest when necessary but I don’t stop.

I’m not a blogger. Don’t give me wrong, I have plenty to say! I just can’t quite make a blog work.

Bottom line is this…
The procedure I had done in December in LA at the Autonomic Specialist Clinic was good. The recommendations that they made for me were good.

My overall pain is extremely less than it was before! I am still driving and able to take care of myself. Diligence. It’s still my 2016 word.
Unfortunately, however, there is not much more to talk about.

That said, this page is staying up. Maybe there is someone out there that’s like me. This would be the way to find that person!

Mostly disabled?
Leery of doctors?
Primary progressive MS?
Know someone who is?
Close enough?

Contact me.
Dawngusty@gmail.com

 

And here is a sweet picture…

me and R

What Else Can I Do?

I want to keep this blog updated weekly. But it seems silly to write the same thing each week-
My pain is still gone and the fatigue is much better!

That is absolutely true. And that right there is worth every effort of this procedure that I had done!

But here is the tough part:

My goal was to walk one lap with my walker around my house each day this year. The truth is that walking is getting harder; NOT easier which I had hoped.

The tremors in my hands and arms are still debilitating. I spill a lot. And don’t ask me to butter bread!

And even though I do yoga every day, I am extremely stiff. Whenever I go to do my exercises on the floor, it’s as though I have never stretched. But I still do them.

So I still have my challenges! Big ones.

I would guess that I have approximately 20 to 30 years left on this earth. When abilities disappear in six months, do the math.

But I have a very determined personality. What else can I do but live each day at a time? What else can I do but keep trying to do what I did yesterday?

I wish I could find someone who is similar to me in my physical disability. I am in my scooter all day every day. Thankfully, however, I am able to stand for 10 to 20 seconds, walk (more like shuffle) a very short distance, get on the floor and do yoga and minimal exercises, etc. If you are in a similar situation, please email me!

Dawngusty@gmail.com

Diligence

diligence-problem-solving-125I pray that 2016 holds more health and strength. I pray for great strides or itty-bitty baby steps-whatever it takes.

Instead of resolutions, I have a friend who just names the year with one word. I thought that was a great idea. My word for 2016 is DILIGENCE.

Whether  improving my health or generally improving the type of human being I am, I require due diligence to see positive change..

I honestly thought the first stem cell treatment in 2010 would fix my problems instantly. I definitely felt a greater difference right out of it and that made me excited. I knew it hadn’t taken me out of my hole; just gave me a ladder, so to speak. But I felt really strong. That ended within about 4 or 5 weeks.

This treatment is different. Obviously, I feel extremely encouraged with less fatigue and way less pain. It is merely the start of a journey. I’m so thankful to have focus and hope. With due diligence, improvements can be made. No matter what the improvements are, I will feel better.

My autonomic nervous system got a reboot. My immune system has been gently woken up. The goal is to make them work properly. That requires diligence.

I continue to increase my daily water intake, my daily caloric intake, and my daily plant intake.

I am taking 400 mg of magnesium to help with muscle stiffness.

I am taking sublingual oxytocin to address underlying grief and stress (big time enemies of the immune system!)

I will be starting Biotin which, a study has shown, has great benefits for Primary Progressive MS.

I will be starting LDN (Low Dose Naltrexone) to assist in motility (nervous system communication).

I am moving more often. Exercises or merely standing every 30 minutes. I went back to walking in the pool, and I am going to walk one lap around my house on my walker every day. I do yoga every day.

Those are the biggest changes.

I am going to set a reminder on my phone every three months to remind me of my word. DILIGENCE. That will help me stay focused so the word doesn’t become AMBIVALENCE by mid-year, SLOTHINESS by Fall. Happy 2016. Here’s to being a better person on this day in 2017.

Like A Baby

*I will send $20 to whomever knows what song that line comes from. (Hint: Shooting pool directions, they may or may not eat robots, from Boulder, CO) Email your answer.

I’ve been home for a little over a week now.

As expected, the results are not as dramatic as they were right out of the gate.

But! There is no doubt that I am less fatigued and THE PAIN IS STILL GONE.

It was far too easy to feel discouraged a few days ago when my exhaustion made me wonder if the fatigue was back. But no one can go from 10 miles an hour to 50 miles an hour without feeling it. I was just plain tired.

The pain is still gone.

That may just be a direct result of the procedure causing an anti-inflammatory effect. A dose of steroids can do that! So it may come back, it may not. And I will be honest on this blog regardless.

I wondered before the procedure if weakness was fatigue. For instance, my left side is incredibly weak and I was getting to a point where I couldn’t safely grip anything with my left hand anymore.

With fatigue gone, would my left hand work better? The answer is yes. Weakness with a layer of fatigue on top makes it even worse! I am still weak but I can grip things easier.

I’m doing everything I’m supposed to do. I’m moving every 30 minutes. I’m doing breathing exercises. I’ve added some things to my diet per my doctor’s suggestion. There are some new supplements/medications on the way that I will add. I also have several tests at home which I need to do and send to a lab which will dictate future treatments as well.

Baby steps. The struggle remains but the fact also remains that I am able to take those baby steps! I wasn’t at all pre-treatment.

SO Glad I Did This!!

IMG_3425To L.A. and back we went! The experience was big and we learned so much. Dr. Arata is fantastic and very knowledgable. The clinic staff was extraordinary. And here we are at Venice Beach. We even saw the famous turban dude on skates who plays electric guitar!

This procedure wasn’t a magic pill. It was the first step toward getting better. (Curious? Procedure details are below. )

I have two challenges. First, I have to put the fire out that is inside of me that is causing my disability.
Second, I have to “rebuild the house”-after years of struggling, my muscles have atrophied and my frame is extremely weak.

This procedure made giant leaps towards putting the fire out. The doctor then instructed us on a path to continue containing that fire so that I can feel better and work on the second challenge.

He reminded us that this will not happen quickly. It took me 10+ years to be in the physical state that I am in right now. So it will take patience and strict determination to get past the fire.

However! Initially, I am so pleased to report that I instantly am feeling tremendously less fatigue and pain. In fact, I am a little nervous to say this but… Here I go… The pain is gone!

So when you see me, you may or may not see any progress yet. But I feel it! It’s like I took a solid nap then drank a cup of coffee. Ping! I’m chipper!

Most people don’t know because I think I did a pretty good job of hiding it. Preprocedure, I struggled every day to get out of bed. I didn’t ever want to. I got out of bed ONLY  because I didn’t want to be that person that slept all day. I got dressed ONLY because I didn’t want to be that person that wore her pajamas all day. So that was more reflective of the type of personality that I have.

All throughout my day, I had an overwhelming urge to just go back to bed.

That one thing is gone! That is what I needed to be able to get started on the journey towards rebuilding the house. And now that the procedure is done, I can actually respond to my efforts (that wasn’t happening before.)

It will be a long road and I need to be diligent.

What do I have to do now?
John has extensive notes, thankfully, because it’s a lot. The success of this system “reboot” is dependent on my actions.
Supplements, tests, possible medication… (Want details? Email me if you’re curious or need the info!)

First and foremost, I need to retrain my body to eat the way it is supposed to – 4 times per day, mindfully, preferably socially. And move – but not overdo. Apparently hormones secreted during intense exercise are bad during my reboot time. So that is what I’ll do and I will record all of that here to keep myself accountable- not because I believe y’all want to know.

  • PROCEDURE DESCRIPTION:

The doctor put a tube in my femoral artery and snaked it to my jugular and some points along the way. It’s crazy to me they can do that! And we have a video of it! He inflated a mini vein balloon to open up those key circulation points. He mentioned I’d feel pressure.

To quote my favorite comedian Brian Regan, “Doctors don’t tell you about pain. They do talk about pressure…When a doctor tells you you’re going to feel pressure, buckle up.” Yep. I did not enjoy the pressure.

He also harvested stem cells from my flank (that makes me feel like a cow) and separated them from the collagen. Then they fed them back to me through an IV. These cells settle in my lungs where they are consumed by macrophages. Once a macrophage consumes a stem (they normally consume bacteria which inflames my system…bad), it becomes anti-inflammatory and calming to the whole system. That’s what my immune system needs.

Hope in the form of TVAM / Stem Cell

I was diagnosed with Multiple Sclerosis in December of 1997.
I am not Relapsing-Remitting, meaning that I always feel my symptoms. They never go away.

I do not take any of the available MS therapy drugs. (These drugs are specifically for patients with Relapsing-Remitting MS.) I do not see a neurologist. Neither of those things can help me.

IMG_3975Yoga, swimming, supplements, a clean diet, PRAYER, juicing, acupuncture, Chinese medicine, chelation, bone marrow stem cell treatment, meditation, exercise, infrared light therapy, massage… All extremely good things that have prolonged the quality of my life and have lessened the impact of my disability.

However, they have not stopped the progression. I continue to get worse. I continue to do less. What comes next? How much will I lose? When do I stop pushing myself and functioning? When do I get a full-time nurse and give up?

I am in a scooter full-time. I am almost always in pain.

I am tired.

Which leads us to the next chapter in this journey towards better health- TVAM, Transvascular Autonomic Modulation (read: vein dilation), combined with adipose tissue stem cells. It directly addresses the autonomic nervous system. Mine stinks.

This treatment is performed at a clinic in LA. They have extremely high success rates instantly, six months out, and three years out of treatment.

We feel extremely hopeful that this will provide some benefits and relief to me! I need it. So here we go.

We leave December 6. Treatment is on December 7 and 8.

Please pray.