Category: health adventure
I Spent Rare Disease Day on the Couch
Acupuncture saved my life
2016 in Review
(source) |
“No signs of active SJIA”
Lifestyle changes & Chef Mullen
I cut sugar, dairy and grains out of my diet and focused on a largely plant based diet supplementing grass fed meat and wild seafood. When it came to booze, I didn’t drink for 2 years (but have since added a little wine from time to time).
Within a year I was off ALL of my medications and there were no longer any signs of RA or any other autoimmune disease in my blood, something I never would have expected a year earlier. As I continued on my journey, my body changed shape; I lost weight, became more flexible, and rediscovered my inner athlete.
I started cycling competitively, riding an average of 150 miles a week, and I started practicing yoga.
Courtesy of Amazon |
A holy cow of a rheumy update
I’m about to leave work to backtrack towards my house and head to my appointment. I’m nervous, especially as I realized yesterday I’m in my first fibro flare where Arthur has not joined in.
It’s weird.
Happy birthday Arthur
Normally, my birthday wishes to Arthur wind up with me flipping it off.
This year, I’ve been grieving Arthur not being around as much.
It’s a catch-22 isn’t it? Because I don’t want to be sick – but I’m also missing a huge part of me, the biggest constant throughout the last 22 years of my life.
Not having contact with my family only intensifies that grieving. Arthur not being around is like losing someone close to you. He has been my best friend for so long, out of necessity more than choice, but still.
Many of us talk about this idea that having a chronic illness is like having a third unwanted person in your relationship.
Do I appreciate feeling better and being able to do things? For sure. But I miss him.
I don’t miss waking up with stiff joints, but I miss when he would gently wake me up and spend time with me in bed.
I don’t miss him sidelining me, but I miss knowing how my days were going to go.
I don’t miss staying home from work sick and in pain, but I miss watching Let’s Make a Deal with him while we eat comfort foods.
I’m learning how to walk again, with joints not constantly angry. I’m learning how to move, how to exist, what I look like without constant rash. It’s like a quarter-life crisis.
Perhaps part of the problem is knowing that, when I’m alone, now I’m truly alone… alone with the feelings that I still have a hard time processing… alone with the memories of growing up and being abused… alone with the self-anger I’ve felt from my PTSD, being angry that I can’t just turn it off… being mad at choices I’ve made or things I didn’t do right.
So much of the zeal I have for the things I do has been because I *knew* I would never be better. Now I sometimes find myself struggling to finish things up (like emails – sorry!).
We talk so much about how to try to be well with chronic illness that there is so little out there about what happens when we get there. I have heard those ideas echoed in cancer communities as well – what do you do when you’ve beat your foe, even if just for now?
In any case, Arthur, my friend, this body functions better without you, but this brain is having a hard time adjusting.
I wish I was still flaring
Having such a low sed rate is weird. It’s too weird.
I keep waiting for the other shoe to drop, but in reality I kind of more hoping it does.
My whole identity is based off of me being a fighter. If, for now, I’m winning the battle against Arthur, who am I?
It brings up all these emotional issues to deal with too – like above on the nature of self, past issues I’ve pushed down too long and now have to deal with, and more.
I’m no longer afraid I’ll randomly go into the hospital and never come out. I’m afraid of what happens if I continue to be better.
I’m in physical therapy twice a week, which is good but kicking my ass. Building up strength is something I’ve never been able to truly do from the ground up.
Part of me wishes, though, that I was running, that I could take out my emotional turmoil and anger on my body.
I guess that’s a form of self-harm, but it’s one that helps me process.
Or not – it helps me hide from processing anything, everything.
I wish I was still flaring. My body doesn’t know how to move. Like Lucy, I’m having to learn to do things all over again. When it was a constant back and forth, I was okay with it.
Now I have to see all the damage – mental, emotional, physical, dental – piece by piece.
I have to face the fact that my mother didn’t do jack shit for my body growing up, and negatively affected my soul.
I have to see my body the way it is and know that this is what I truly have to work with, that $20k of dental work and bajillions of dollars in mental and other physical work has to happen.
I could use weeks of PT and mental therapy alternating while I get my dental crap worked on. Work is already unhappy about the time I’ve taken off for PT alone – so much so I have to redo my FMLA paperwork to prove that I’m sick enough for this crap.
I’m doing what I’m supposed to do, rebuilding myself. No one got mad at the six million dollar man for recovering from all his surgeries and crap. Would it be the same if I were recovering from a more obviously severe and well known illness like the big C? Would my office mate be as angry? Would my supervisor or HR? I thought society was supposed to support this type of journey? Am I not inspirationy enough for the inspiration porn club?
I don’t know that I’m strong enough to face all the issues I’ve discussed but not fully dealt with – my mother, my molestation and sexual assaults, emotional and medical neglect, illness issues, feeling like I don’t do enough for others, inadequacies, triggering PTSD moments… These are not things one can address one at a time, not now, not without that distraction of pain.
As horrible as it sounds, I miss it. It was comforting. I knew standing and dancing at a concert would lead to angry knees. I knew sitting at my desk would piss my neck off. I knew I couldn’t do certain things like vacuum.
I don’t know who I am anymore.
It’s easy sometimes for us to climb up from so far in the rabbit’s hole. We swear we can see the top, and we keep pushing even when we fall.
Right now, despite the things I’m doing, it feels like I’ve finally hit that bottom and am really looking at all the steps to get way back to the top.
If and when I get there, I don’t even know that I will be able to climb out all the way… It isn’t what happens if I don’t, but what happens if I do?
A $20k smile
The above is an estimated for the bulk of the dental work I need done.
It doesn’t include work already done, or the root canal and crown already scheduled later this month.
It also doesn’t include the coverage or discounts I get with insurance.
When all is said and done, my mouth would have cost me around $20,000 total without insurance. My sister has it beyond worse and always has.
This is what having an abusive & neglectful mother gets you.
This is what not being taught to take care of yourself gets you.
This is what having multiple chronic illnesses gets you.
At least my mouth will always be a reminder of why I refuse to interact at all with my mother.