Chronic Pain

How I’m doing now: my mast cell recovery

Hey everyone,

A few people have reached out to ask me in the past week to ask how I’m doing now, with my mast cell issues. Whenever that happens, I always take it as a sign it’s time to get something up on the blog… so here you go!

First, let me preface this by saying that, in keeping with DNRS principles, I don’t normally think (or write) about my symptoms in detail.

As you may have seen in previous posts, a big part of my healing came from doing a program called the Dynamic Neural Retraining System. In this program, you are essentially “restructuring” your brain to get out of the fight or flight state, and into rest and digest.

So, in DNRS, you usually don’t go into detail talking about your symptoms. It’s pretty remarkable how it works, actually!

And that is why I never really wrote about the day to day of my symptoms and recovery on here. I needed to let my brain heal.

Yet at the same time, I know what it’s like to be clinging to those recovery stories, and seeing people in the DNRS forum list exactly which symptoms went away, and what they can do now.

If you’re in the space where you need to think like that, and it helps you feel positive or to have some hope, then all the power to you.

So that is why I have decided to talk about some of my specific symptoms on this blog, but with every effort to put a positive spin on it.

What were my treatments?

Lifestyle changes recommend by my doctors:

  • eating as diverse a diet as possible, including an emphasis on fruits and vegetables
  • exercising regularly
  • learning that I am hypermobile and doing physical therapy to reduce strain on joints (when the body has to heal an inflamed joint, it can trigger mast cells)

And how am I doing?

When I wrote my post last summer, I was experiencing almost no symptoms at all… yet I had almost no stress in my life, and was still taking Ketotifen twice a week.

After I wrote that post, I made the decision to cut back on my medication and face more of the stresses in my life. I did experience some more symptoms at that point, and realized I had further to go with my healing. So I kept going with DNRS to heal my brain, and lifestyle changes to help my mast cells calm down.

Given everything that’s going on right now, it seems like a weird time to write about how you’re doing well.

I would honestly feel like a jerk if I came on here and wrote about how “oh, I worked on my stress! It’s all under control now!” I don’t know if anyone would say 2020 has been low-stress, and it certainly hasn’t been for me.

So, although I was not able to change that part of the equation, I did keep going with the other facets of my recovery.

I’m happy to say that I’m doing so much better now.

Again, when you do DNRS, you’ll see why they recommend not to make “lists” of symptoms, or compare your recovery time to others. It’s because it puts your brain back in that “fight or flight” trauma loop that it’s trying to get out of.

That is why I haven’t shared tons of specifics about my symptoms and whatnot.

But, at the same time, I do know how important it is, in those beginning stages, to know that someone else got through it, and that there is hope.

So here is where I stand now:

I’m still doing DNRS. I don’t necessarily do a full hour a day, now that I’m about a year out, but I do about 15-30 minutes a day. I also make sure I structure my life around the principles, so that my brain stays out of that “trauma loop.”

I’m pretty much eating whatever I want. The only thing I have to be careful of is dairy, for some reason– I can have a little, but not a ton. However, this is still a work in progress and I expect that it may become a non-issue as I continue to heal.

The other things I’d been nervous about– spicy food, caffeine– have all turned out to be fine.

I have no issues with exercise, or activity, or, thankfully, hot or cold weather. (I had no air conditioning for a while in my car this summer and somehow, I survived even that without a mast cell flare-up!).

Overall, I don’t really feel that mast cell dramatically impacts my life, at this moment in time.

I’ve currently cut back on my Ketotifen to 0.05 mg once a week. Yes, that’s right– it’s a tiny dose! However, I am very sensitive to it. At my highest dose, I was taking 0.25 mg every third day, so you can see how dramatically I’ve cut back.

I will probably always be sure to pre-medicate before medical and dental procedures, just as a precaution. But other than that, I am hoping to wean myself off of Ketotifen completely in the next few months.

I do know that things could always change– but thankfully, I feel confident that I have the right tools if they do.

So… I don’t know if I’ll ever say that I’m “happy” I ended up on this journey.

But I can say that I have met some fascinating people, and am so grateful for all the support I’ve received. Whether it was medical professionals, people I met at in-person groups, or online support groups, I learned so much– not only about myself, but about how others see the world, how they can rise to challenges and then turn around to help those behind them..

I’ve been through a lot– but I’ve also learned a lot, and I feel a lot less alone.

Moving foward

I’ve started a new site to talk about mast cell issues in more detail! Be sure to check out Mast Cell Healing.

I’m also now offering health coaching calls. It’s a chance for readers of my blogs to check in, ask questions about any of the subjects I talk about on my blog, and get my recommendations based off of my own experience.

Many people have told me they find it helpful just to talk to someone who’s been through it themselves. I know some of you reading this may be just starting your journey, so I hope to help you find your way.

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