My Doctor, "This is Not Your Life Now. This is Temporary."


I had an appointment with my doctor today. He started the question with,

"Why do you want to file for disability?"

I told him my concerns.
This is killing us financially. Many of our medications aren't being covered. 
Between the foods, medications, supplements, we're drowning.

He laid out his,

"Mast cell and mold toxicity aren't covered by disability." 
(We already knew this.)

"It is hard to get disability for sporadic episodes."

"We can do an exercise test and MAYBE make a case from a lung function perspective. That test costs $400 and there are no guarantees."

And he recommends getting a lawyer if we're going to try.

I told him that my number one concern was that this was my life now. I was trying to figure out how we were going to make it.

He replied, "This is NOT your life now. This is temporary."

His estimate is that my recovery is around 18 months. This is encouraging.

Right now, Mast Cell Activation Syndrome is what he calls "our road block."

He warned me before that this was the big pain in the butt and he wasn't exaggerating. 

The Mold Toxicity has caused the Mast Cell Activation. Detoxing the mold can calm down the Mast Cell attacks and frequency.

But Mast Cell can become overactive and make detox very, very slow.

That is where we are.

A few weeks ago, I got the flu. This activated the Mast Cell and I had some of the walking episodes that I've shared before.

Then, it calmed down.

Then, a major weather front came in, and that's when I started walking like this.

But, like Dr. Potter said, these episodes come and go very quickly. Later this day, I was walking outside and riding my bike with my kids. 

Yesterday I had a major blood sugar spike (for me, mine tends to be low) and I got really sick. Steve had to help me to the bathroom and I couldn't use my legs. We were trying to figure out if I needed to go to the hospital. After I got sick, I checked my blood sugar again. It dropped by over 100 points in less than 20 minutes.

Doctors don't catch these episodes because they come and go quickly. And if they do happen to catch one, they assume it's a fluke because they don't catch it again.
We've been doing this for over 4 years.

This morning I was walking like I was in that video. 
This afternoon I'm fine and was standing in the kitchen doing dishes. 

According to Dr. Potter, there are only 2 things that can make your body react so quickly and then settle down:

Mast Cell and Limbic Dysfunction.

I have both.

I asked him what the long term goal is as far as Mast Cell. He said that after I am detoxed from the mold, it is to see how much we can taper off the medication. Some can stay on a low dose benedryl, allegra or ketotifin to manage their symptoms. 

Some can just stay on a supplement like Quercetin.

But we're not there yet.

I have been very open about this journey and it's costs and strain so I'm going to be open now. This is what I'm on JUST for Mast Cell. The Mast Cell is what is triggering whether I can walk among other symptoms.

Ketotifin- I am supposed to up this medication by 60% to see if we can get it strong enough for me. That cost will be $387 a month. It has to be compounded per my doctor. We are going to TRY to get insurance to cover it but aren't holding our breath.

Hydroxyzine- This one is cheap and covered by insurance, Praise God.

Pepcid- (works as a Mast Cell Stabilizer in the gut) I have to take it 3x a day. $60

Palmitoylethanolamide- $23

Glucosamine HCI + Chrondrotin- $30

Quercetin- $20

Just for treating my mast cell, without any other supplements that I have to take for inability to absorb nutrients and or detox,

It's $520 a month.

The cost of the other supplements for detox, genetic issues, inability to absorb nutrients, etc is

currently $719 per month and that changes as he adds in more things in an effort to calm the mast cell.

This is just for me. It doesn't include Reese. 

That makes the total cost of my supplements and medications $1239.

I told my sister that I need a cheaper disease.

The good news is that there is a light at the end of the tunnel. There is a day when things will calm down. I will, in the words of my doctor, always have to be incredibly careful about what buildings I go in and where I live, but a weather front won't always take away my ability to walk (it doesn't always do it now).

Walking briefly into a moldy building won't always cause a severe reaction, as it does now.

In the mean time, we trust the Lord and take one step at a time.

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