I’m a perfectionist. I don’t want to publish anything just for the sake of posting– I want it to matter.
So, if you’ve noticed that it’s been a while since I posted on this blog, that’s why.
My recovery from mast cell activation has taken me a bit longer than I thought. I wanted to my story to be one of those miracle success stories where everything was resolved in six months.
In the end, this story has had a longer arc than I’d anticipated.
When I wrote my post last summer, I had virtually no symptoms. I was still taking my mast-cell stabilizing medication, and at that time, I had very little stress in my life (other than trying to overcome this condition).
However, once I reached that point where I felt stable, I decided to:
- cut back on my medication
- try to face more of the stress and pressures I’d temporarily given myself permission to avoid.
And yes, some of my symptoms came back. Definitely not as bad as when I’d been first diagnosed— thankfully I never went back to that— but I realized that the medication had been helping more than I’d realized.
And that perhaps, measuring a condition that’s highly correlated with stress, by a time when you’re purposely ignoring all the areas in your life, isn’t necessarily going to give an accurate picture of what’s going on.
It was disappointing, and tough, and stressful.
Among other things, mast cells have been shown to release chemicals that can affect the brain- causing symptoms such as anxiety and depression. Let me tell you, I went through some moments that were not pretty.
In some ways this phase of my recovery was more difficult than the beginning. In the beginning, I clung to only the most dramatic success stories — the people who said they recovered 100%, in a shorter period of time.
Looking back, I’m not sure how many of those stories really existed, so much as I saw what I wanted to see, or needed to believe.
Now, I had to face reality– not a dramatic, 100% inspirational-all-the-time story, but an actual real, nitty-gritty story, complete with bumps in the road and setbacks.
Truthfully, everyone in the success stories that inspire me most did take longer to recover.
Whether they recovered using the Dynamic Neural Retraining System, as I did, or something else. And whether it was people found online, or some of the awesome people I met at a support group (one of whom has recovered enough to go back to work, and is now my nurse practitioner!).
Most of these people actually ended up taking a year so two to really recover, and still do things to maintain their recovery now.
I wasn’t really ready to hear that in the beginning — I needed to believe that one day I’d wake up and find this had all just been a bad dream.
In truth, it was more gradual. I wish, now, that someone had given me a crystal so that I could see into the future and realize how much it actually would be okay.
So what are the silver linings?
Through attending a support group and meeting a doctor, as well as my nurse practitioner, I learned about DNRS and discovered the role the brain can play in many chronic conditions.
I already knew about this in terms of chronic pain, but I’d had no idea how much it could also be playing a role in things like mast cells and allergies, which had really plagued me for years.
I’d only ever learned about the immune system, in terms of allergies, as something that had to be managed. Through DNRS, I learned to view the immune system as yet another protective mechanism– one that can go awry.
I met some fascinating people.
I really need to devote an entire post to the people who helped me, but the same was true here as what I found with the SI joint. What it really comes down to is those individual practitioners who were able to see what others in their field couldn’t.
Although not everyone in the field of allergy and immunology knows about mast cells, there are those certain providers who saw what everyone else couldn’t see, and decided to take an interest in helping those patients. They’re the people who stepped in to fill the gap.
Learning I’m hypermobile
A huge silver lining of all this, although it certainly didn’t seem like it at the time, is that I discovered another genetic condition that I have, which seems to be linked to having mast cell issues.
That condition involves hypermobility of the connective tissue. You may have heard of some of the hypermobility conditions, such as Marfan Syndrome or Ehlers-Danlos Syndrome. However, there is really a range of hypermobility conditions that science has not yet totally understood.
I learned a TON about this when I first started going to Muldowney Physical Therapy, a place that’s truly knowledgeable about mast cell issues. I thought I was going there for help with that, however my PT Kathleen actually identified that a lot of my joints fit the criteria for someone who’s hypermobile, and urged me to consult a specialist about that.
Learning about hypermobility explains so many of the symptoms I’ve had, and a big piece of my chronic pain puzzle, as well.
With any chronic illness, I truly believe that the right information is out there.
However, those really brilliant doctors, nurses, PT’s, and researchers may not necessarily be the best at marketing themselves, or getting that information out online. (They’re also probably too busy treating patients!).
I think maybe that’s my role for right now, and where I can come in.
I’ve been through this, myself. I love to write, and to translate scientific concepts for a general audience.
I love helping people who’ve been through what I’ve been through, and helping them figure out their way, when they don’t know where to turn.
The truth is that I’m not exactly where I thought I’d be in my life at this time. Between my battle with SI joint dysfunction and developing mast cell activation syndrome, things have taken a bit of a turn, to say the least.
But after the battles I’ve fought and the lessons I’ve learned, I’m honestly okay with where I am now.
My message is that you can be okay, too.