A nap as a spiritual calling?

Maybe blogging late at night isn't the best time for me to be doing it. I always seem to be overtired and maybe a little more emotional. I don't know.  Maybe that makes it the perfect time.

Today I made a powerful choice for self care, and I feel proud of that choice. Powerful yes, but made quietly. I followed the direction inside, step by step, my intuition, my angels, my spirit guides, or maybe simply my better sense. I don't know. I walked away from a situation that I thought I could handle. Indeed, I rested some of Thursday and most of Friday so I'd feel well enough to go on Saturday. But when I got there I realized that while I had enough energy to take care of myself, I had nothing left to care for anyone else. And since looking out for and caring for others was *exactly* my job today, I obviously couldn't do it.

I miss out on a lot of social events. I don't go on dates, at least not lately. I can't seem to find the energy nor the opportunity for any classes of the extracurricular sort, and I know I'm missing out on a lot of enrichment in life. Most often I have a peace with this because I know I'm better off resting or staying in.

But today was hard, even though the choice was easy. It was hard because I walked away from an activity that feels like my calling. Usually in that situation I feel like I'm exactly where I'm supposed to be, more than any other situation ever, I feel a _rightness_ about it that I can't explain. I feel that no matter what I AM doing what I'm supposed to be doing. And yet today I couldn't quite get there. I couldn't quite stop thinking about my bed, about resting, about a nap. Since when is a freaking *nap* more important than a spiritual calling? Since today, apparently.

(Other thoughts about community involvement/volunteer work as well as how hard I worked to get where I am. Maybe another post about realizations regarding what I will probably never be or do, especially in light of IMsL this coming weekend.)

Out Of My Mind

I felt like an addict today when I was sitting on the edge of my bed, head hanging, a bottle of pills in my hand. I even poured them out and counted how long they would last. I picked one up and rolled it around my fingertips imagining what it would feel like to swallow it, the metallic taste in the back of my mouth, my heart racing as it kicked in. But I didn't take any. I slid them all back into the bottle and left them on my nightstand while I went to work.

I mean no disrespect to those who have dealt with or continue to deal with addiction. I respect you for your struggle and your recovery. I went to Al-Anon. But aside from cigarettes, (non-smoker for over nine years) I don't have any personal experience being addicted to a substance.

What I do have is what I am perceiving to be nearly unbearable circumstances. Notice how I worded that sentence. I don't mean they *are* unbearable, only that I perceive them to be. I'm looking for a way out. I need it to stop. I'm going nuts. Bonkers. Batty. Loosing my marbles and hanging chandeliers with not enough bulbs. Whatever.

At two weeks I was in tears of defeat. At three I'd asked for help from my doc and started to help myself. It's been nearly eight weeks of horrible, painful, inflammation and swelling, matched with other weird symptoms and now terrible ME/CFS flare up too.  And it's been five fucking weeks that I've been surviving on fruit smoothies, raw food snacks, and green tea. Two months of nightmarish inflammation and I'm so done. I give up. This is too much.

I can't go out, I can't eat normal food, I'm having trouble breathing because of bronchial inflammation, coughing, headache, hives, swelling, skin bruising, heat, fever, sore throat, swollen glands, swollen esophagus, joint pain and swelling, strange bleeding, poor sleep, rhythmic muscle spasm, high doses of palliative meds that are probably hurting my liver and kidneys, and oh yes...I'm fucking tired. Tired of walking, tired of working, tired of pushing myself through activities that are hurting me. I'm fucking tired.

I want to cry but my throat is so sore it will hurt, and my eyes already feel like they're burning. I try to watch funny viral videos to raise my mood but when I laugh it hurts to cough. My muscles are sore, I feel raw in more than a few ways.

All I seem to be able to do is bear it. And often I seem to be able to do it with a smile, a good mood, and even positive, uplifting attitudes.

But not today. Fuck it. I want the drug.

I want the nasty steroid that will suppress my immune system and completely deregulate an already deregulated system. I want the drug that will make me put on more weight, swell up like a puffy balloon so none of my clothes fit, retain fluid in my legs and ankles so painful that it hurts to work on my feet all day, let alone walk to the train. I want the drug that will displace adipose (fat) tissue and make it show up in weird other places. I want the drug that causes tachicardia so high I have trouble standing up until I adjust to it. I want the drug that causes even more symptoms when weaning off of it.

I want out of my body. Or I want it to feel like I place I want to be. I need a fucking break. Fuck.

It never goes as planned....

......and I'm ok with that. By "ok" I mean I don't feel much suffering at all around the issue. Sure, I like to plan. I've got some mad organizational skills that need regular exercise but I also know that it almost never works out how I thought it would. Isn't that grand?? Universe can plan some pretty amazing stuff for me and if I held on more tightly to what I think I want right now then I wouldn't get to see or feel the new stuff, the amazing stuff, the unexpected stuff.

I always seem to think I know what I'm going to write about before I do. After my last post I thought it was going to be very important to write all about my diet and my smoothies, but no, today I find it simply doesn't matter.

I seem to still have some expectation around how often I'm going to blog here but that doesn't work either. Sometimes I need to express, sometimes I need to be Seen, sometimes I'm lonely.

I'm quite grateful that I'm such a natural introvert. Since getting sicker I've spent a lot of time alone at home with only my cat, Switch, and my Interwebz for company. Here he is doing a great job of it. :-)

But I do get lonely. I love to hear about events happening, even if I can't go. I like to be invited even though I know as soon as I read the invitation that I'm going to decline. If you do see me out then it's a good day, or else I really really really needed some socializing.

IMsL is coming up in two weeks and I'm already feeling a little anxious about it. So many people going every direction and a lot of them I want to see because I might see them once a year at best. It will be busy and active....and I'm already thinking about how to plan my outfits to cover up the hives. If it's even possible. Going shopping tomorrow to see if I can find something new, pretty, girly, and possibly inexpensive to wear for the event. And definitely stopping at Target for some tights. The hives still seem to like to be on my legs, especially if I don't have time to rest. A lot of my regular outfits show skin, especially the upper chest, shoulders, and neck, and that's right where a lot of hives like to be. I haven't figured this one out yet. Sheer long sleeve top under the corset?

They were pretty bad yesterday and this morning too, but the most active thing I did today was walk out to the kitchen so they are much better. Switch has stayed by me the whole day. Such a trooper. Cause it's pretty hard on a cat who had a mom who's in bed all day, donchaknow. ;-)

What?!? Sick, again?

Yes. Sick again. In spite of all my efforts to take care of myself, the constant attention to activity and exertion levels, the vigilance,  I still ended up in a flare-up. In retrospect, I hadn't been eating very well. I was going out a lot to eat because it was convenient, drinking more often than I had in a long time. Eating sugar. Maybe not even resting as much as I *could*, although I believe I was resting as much as I needed. I hadn't had flare ups of CFS symptoms, except for short term crashes that I recover from in a few days in nearly two years. And I didn't get the symptoms, the horrible, challenging symptoms I got this time in about three years. I thought I was home free, but now I'm thinking again.

The hives are back. DUM, dum, DUUUUMMM!

heh.

So I was ill after my trip to Sedona. I believed that I'd somehow accidentally ingested gluten and that I was having a reaction. Then about two weeks later, eating relatively normally but not going out as much since I'd just spent money on the trip, I had some Thai food. By a few hours later I could feel the hives starting to break out. They were bad enough that I was alarmed, remembering the three horrible hive attacks I'd had over about a two year period. They got a little better a few days later, and then blossomed again. They kept getting worse and worse. By three weeks I'd had enough. I was freaking out, scared, panicked, and feeling defeated.

I called my NMD in Arizona who's been my doc for six years. She agreed with my theory of leaky gut syndrome post gluten attack and that it was probably causing my immune system to over react. She prescribed a regimen to heal the leaky gut and to hopefully reduce the symptoms. In the past I went on prednisone to control the symptoms, and high doses too, but I still have after effects from the side effects of the last round of prednisone. Edema, adipose relocation, adrenal fatigue, and about 40 pounds that won't budge. I chose to try and weather this inflammatory experience without immune suppression.

Here is a picture of how they looked when they were pretty bad, but not necessarily at their worst. About 40% of the surface area of my entire body was covered in flowery hives just like this.

The red outlines indicate the outer limits of the hives and only look like this after antihistamines to reduce the swelling and hydrocortisone cream to help the itch that made me bonkers.

Every morning I'd wake up and spend about 20 minutes scratching which seemed to burn out the little mast cells and keep them from pumping out more histamine.

They got worse with work and other activities as well as with certain foods. So I put myself on the safest diet I could, and for three weeks now I've been on an anti-inflammatory fruit and greens smoothie diet. There are a few add in I'm beginning to integrate one item at a time so I can determine if I'm reacting to it. I've found a couple things my system doesn't like in the process, but for the most part the diet, along with the treatment from my doc, has helped a LOT. How else would I make it through three weeks on a damn smoothie diet?!?

So this second pic is what they look like more now after a day of work. Smaller, more red, and bumpy. I start the morning with them on my torso and then the morning ones fade away. By afternoon they are starting to come up again and they appear more on my forearms, hands, lower legs, and feet. before they'd last about three days, now 1/2 to one day. And they're not as itchy. Last week after a couple days rest I was nearly hive free. Then one day back at work and I'm all worked up again.

At one point recently there was so much swelling around my ankles because of the hives that not only was standing and walking painful, my skin was covered in bright purple splotchy marks from broken blood vessels. It took them days to fade away. :-/ I didn't get a picture. I think I wanted to forget.

BTW, it's been nearly six weeks that I've had hives. Every day. At least they're not so much on my face anymore. When they're on my lips and eyelids is the worst....second only to a sensation of swelling in the throat. That pretty much sucks.

Obviously I'm having terrible inflammation and keeping it down is key. I haven't been very far from my blender in three weeks and I haven't figured out travel quite yet. I'm going to be pretty restricted in my diet for some time and I'll need to make it work somehow.

There's another symptom which I'm not really comfortable putting out there quite yet, but I'm beginning to suspect colitis, or inflammation of the colon/gut.

I'm tired for now. I do intend to make another post more specifically about my anti inflammatory diet but that'll have to wait. Maybe tomorrow.

Has it been a long time...again?!?!

I'm looking back and my last post was in January, and that even though I decided I'd post more often, that I wanted to get back to it again, I haven't. But there's been a lot going on, and not going on, that has kept me busy. Especially the last six weeks or so. 

At the end of January I took a trip to Arizona (where I used to live) with my current partner, Vick. We spent four days in Phoenix attending Southwest Leather Conference southwestleather.org After that we took about a week and visited Sedona as well as Jerome, AZ and the Grand Canyon. Here's just a couple of pics from that trip.  

Vick and I after the contest at SWLC Phoenix, AZ

Caduceus Wine Cellar

Jerome, AZ

Amitabha Stupa, Sedona, AZ

Sedona, AZ

The official Grand Canyon Shot

The largest crystal skull I've ever seen!!!

Bell Rock Sedona, AZ One of my favorite places in the world

So during the time in Sedona....wow, just remembering the trip I could make several blog posts about it. About SWLC and the Dance of Souls too. It was amazing. I really stepped into my own. I grew. I handled responsibilities like I'd been trained to do it. And I have been, for years. And that was my chance to show it. :-)

Anyway, during Sedona I got sick. And by sick I mean a little CFS flare up, but lousy gut symptoms that I've usually associated with Celiac Disease. For days I had trouble. I can back from my trip exhausted and sad, even though it was a good time. 

I think I had to fill that in as a part of the past in order to bring things current. I got sick...and I'm still trying to get better more than two months later. Next post.