As of this month, I've been treating for 20 months. Almost two years already! I remember about 3 months into treatment, I had a couple good weeks. I thought to myself, wow! Looks like I'm already healing! I laugh at that now, because that was just the beginning. Healing isn't quick, and it isn't predictable. The only predictable part, is the unpredictability. No two healing journeys are the same.Almost two years, and I've not yet made it to remission. I'm honestly not bothered by that, because I know I'll get there. The year of antibiotics put me in a place where I was much more functional. I don't care if the herbs take a while, because I am already in such a better place.
Here is my master list of symptoms. I know there are likely some that never made it on here, but this is most of them. Symptoms in bold I still currently have, but none of them are 100% constant. Symptoms in italics are intermittent. I don't have them more often than I have them. Most of these are almost completely gone, happening only once a month or even less. Crossed out symptoms are symptoms I no longer experience.
Migrating joint pain
Joint stiffness
Hip flexor pain
Anxiety
Muscle weakness
Muscle stiffness
Headaches
Pins and needles
Insomnia
Air hunger
Rib pain
Exercise intolerance
Heart palpitations
Eye floaters * I believe mine will never go away at this point
Twitching muscles
Painful toes
Ringing in ears
Pain in soles of feet
Muscle tension in shoulders & neck
Aching jaw
The exercise intolerance I think is mostly due to my inability to build muscle. It had gotten better for months, but after regressing in December it came back. I've been taking it easy in yoga, but I'm finding my body is having a hard time recovering after my weekly Pound class. I'm hoping I won't have to take a break from it.
I'm finally seeing a difference with the air hunger. Prior to December, all my symptoms were just about completely gone except for air hunger. As I said, symptoms in italics are happening very infrequently. I think the only reasons several of them aren't crossed off are 1) regressing in December, and 2) the new herb added into my treatment. I'm not stressing about it. I choose to focus on how far I've come rather than how far I have to go. At this point, I've gone from taking 30 pills a day to 5, and I'm off all prescriptions with the exception of low-dose naltrexone. I can't be anything but grateful.
We are finally at a good place financially again. With the tax return coming our way, we will finish paying off the last credit card and our car payment. We will officially be debt free (except for our house) and I am absolutely THRILLED. We've gotten close, but haven't been completely debt free in the entire 14 years we have been married, so I'm really excited.
All in all, I'm thankful for where I am. Things aren't perfect, but I'm working through them. I'm really struggling with my desire to "seize the day"... ever since getting sick I've had this deep desire to start being spontaneous and doing things I have always wanted to do. I believe part of it is getting sick from a disease most doctors don't believe in, and there is no set treatment for, really puts your life in perspective and makes you keenly aware of your own mortality. I have this deep yearning for adventure, but practically speaking, I have a family who needs (and deserves) my energy and attention, I can't just pick up and leave. I love my life, I truly do. I just need to make sure I'm balancing and prioritizing everything and giving myself a place on the priority list. I always use this analogy for self-care: on an airplane, they tell you to put your own oxygen mask on before assisting others. I used to feel guilty for taking time to myself, but I embrace it now. I think it's setting a good example for my kids too. I want them to know being a mom, being a person, is not just about giving others what they need...it's about giving ourselves what we need.
You have come a long way! I love how you listed your symptoms. It really helps to see the progress. You inspire me!
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