Synchronicity and the wrong path

So often when we have chronic illness, we grieve the things we were able to do for ourselves and others. I tell this story as a hurray! for the little things we can do that can add up to big things.

Many synchronicities have come my way, often when I think I’m off the path. I find it gratifying that when feeling lost, I often find I am in just the right place.

Today, I got off the on the wrong floor at my medical clinic, and waited for the next elevator. I overheard a woman, distraught, talking on her phone about “…he won’t take off his shoes to go to bed.” It became obvious that the man mentioned had dementia, and she felt bereft in knowing what to do.

I waited until she finished her conversation, said excuse me, and apologized for intruding. I told her I had cared for my dad in his Alzheimer’s for years, and it changes what it means to help our loved one. I told her that it’s often the time not to need to be right, but to support the loved one’s dignity in having control over some parts of his life. For example, I got slip-on shoes for my dad, but that got too difficult to manage too, and he didn’t want people fussing with his shoes. So more often than not, he slept in his shoes (with regular foot washings, off course). She told me that this was her husband, with cancer and dementia. I told her that my heart was with her. She hugged me. I told her about the book Social Services had recommended to me when I felt lost: The 36-Hour Day, which is for family caregivers of people with dementia. I got on the elevator. She asked the name of the book again and I repeated it; as the doors closed, I overheard here repeating, “The 36-Hour Day, The 36-Hour Day….”

Coping

I first wrote this as a response to a Facebook fibromyalgia group post asking how we cope when things are really bad ~ meds don’t help; we can’t shower or even go get a drink of water.

Especially when we can’t do much else, the biggest thing is perspective, which I know is hard to keep in the moment and easier to access if we’ve worked on it and integrated it before we’re in crisis mode.

My chronic pain shrink told me to think in terms of episodes, good and difficult. I remember that during tough times. Also, meditation and mindfulness training are good to integrate into one’s psyche. To integrate it rather than just think of it, one must practice when feeling better and if possible, while not. Even during the toughest times, I can realize I am suffering and my mind is spinning, the feelings are transient emotions, and accept it. The feeling  eventually dissolves, and it is easier to live with equanimity.

I try to meditate every day. It’s often easier with guided meditation, and I use Tara Brach’s wonderful talks and guided meditations, which are free to download. My shrink also had me read Tara’s book, Radical Acceptance, which was wonderful. I also want to read her True Refuge. It turns out that she was disabled for a number of years and she talks about it in the book. I love when teachers share their vulnerabilities and foibles, and she is often funny in her stories about herself.

tarabrach.com

When my Reiki teacher passed away, one of her caregivers said that at the end, my teacher had a lot of pain but very little suffering. I try to live my life this way when needed, including during illness. I’m grateful for what I can do at any given time.

Medical marijuana helps my mood and often with pain.

I started a this blog, which is cathartic for me and hopefully of use to others. I think it’s important to let myself cry, and I blogged about the time I cried. Among other things, I also blog about things I am grateful for, which makes me feel better and I hope is interesting/of use to others. A journal might be just as good for some.

I try to set things up so I don’t feel like I’m failing ~

• Normally, I cook healthfully from scratch, but fatigue and/or pain, especially leg pain, makes that difficult. These days, we buy healthy, pre-made deli sides like kale, beets, cabbage slaw, etc., and cook a quick protein. If I’m really off, my husband leaves me food and water when he goes to work. I’ve ordered a kitchen stool so I can sit when my legs hurt and am looking forward to doing more cooking. (I’m also fine with ordering out once in awhile; in fact, here in Portland OR, there is a pizza place that will deliver wine with your pizza.)
• I can’t work and my kids are grown, so when I’m up for it, I do as much as I can for myself and others. I’m a writer by trade, and have done some offsite web writing for a nonprofit for water conservation in CA. When I’m out and about, I give any food or water I have on me to homeless people, or buy something small in the grocery for them. So, in addition to participating in the world the best I can, when I’m less mobile, feeling diminished, and focusing on cooking shows or Facebook for distraction, the things I’ve been able to do are still part of me, and help diminish the feeling of diminishment.
• I’ve always loved entertaining my friends and family; most of them are from out of town and we have a lot of house guests. Luckily, we have a number of cooks in the family and everyone is happy to pitch in. More often than not, I’ve had to cheerily send everyone off for fun away from the house. So I’ve had to adjust my expectations and that has been good practice. It really doesn’t hurt.

I  see my life as a gestalt; I’ve had many blessings and adventures, travel, work, and love (which continues). I don’t see tough times as what my life has become, but part of the unified whole that is my life.

A friend’s Lyme Disease story and ways you can help

Tammy was our most excellent admin at work and became a dear friend of mine. She has been suffering with the miserable mystery and costs of Lyme Disease for over a decade. It has worsened greatly and she is in dire need of help. Tammy has always been a positive, kind, and compassionate person and so deserves every kindness in return. If you can help with a financial contribution, no donation is too small and would be so appreciated.

Another way to help is to post the link wherever you can; permission for this has been granted by Tammy and her family.

Tammy’s story, including videos, is here:

http://www.gofundme.com/tammylymedisease?fb_action_ids=10204467080871210&fb_action_types=og.shares

Thank you and blessings to all.

 

The MJ experiment: I grow larger, I grow smaller ~ or, Why is that cat grinning?

Since we last chatted, I’ve tried numerous medical marijuana strains. A couple smoked, mostly those in a tincture. My dearest hope has been to have something to get rid of pain (mostly in my head/neck and leg) and anxiety, while maintaining enough to go about my daily stuff, including going to my appointments and seeing my dad/taking him to his appointments.

So far, it turns out that if I want to get rid of pain, I have to have enough of the strains that get one high (the ones I’ve used make me quiet rather than silly, although that would be nice). All of the strains I’ve used have helped with anxiety. Someone else’s experience may differ; apparently many people are able to get pain relief with lower doses than I need to relieve/lessen pain. The tinctures take a few hours to kick in.

My husband and I went on a weekend getaway. It was supposed to be for two nights, but my pain made us miss the first day. On the second day, I took one of the stronger tinctures. We went out to dinner, and two-thirds into it, I realized I was stoned, which wasn’t a problem at the time. But being careful and experimenting safely are important. After marijuana was legalized in Washington, they had an increase in car accidents. It’s been legalized in my state, Oregon, yay. Hopefully people will use it responsibly.

Just as I was lamenting not having someone to advise me personally, last week, my doctor and I called a vendor my doc had met at a convention. The vendor has a product they developed that I should be able to get from a dispensary in a couple of days. He uses this too, and advised me to take it at night. It includes feeling stoned, but one sleeps through that and can be alert and free of pain the next day. We’ll see.

I’ve purposely not written even as lowly technical as I’ve become about this, as I’m a newby about strains and such. You can get more info at:
http://www.leafly.com

 

My Medical Marijuana card finally came through …

… Okay, I’m stoned. And out of pain. And stoned. Good thing it’s a Sunday. More later ….

Gratitude October 19, 2014: The kind of support I hope for you all

Paperwork is more anxiety-producing than ever before. Eric* (my PAM/Prince Among Men) helped me fill out my dad’s request to the Air Force for Dad’s honorable discharge certificate (required for Dad’s veteran aid and attendance benefits) and took the paper to my dad’s assisted living place for him to sign. Eric* then came home, put the form in an envelope, addressed and stamped it, and put it with the mail. I feel lighter already.

Tomorrow/today, Eric* will help me file for disability, another scary I’ve been putting off for months.

Can you believe I was Ms. Efficiency at work (for a couple decades) and successfully managed a team of technical writers for six years? Thank you, Fibromyalgia. :(.  But I am a lucky girl, husband-wise to begin with.

 

The madness dilemma

After my California trip, as much as I loved it and was glad I went, I crashed. Crippling fatigue, leg pain, headaches, and most of all, generalized anxiety that just built day by day. Where I had mostly stopped using Klonopin, I used it every day, to the max, to no avail. What was wrong with me? Well la di da, one day I realized that that yellow morning pill, Wellbutrin, was not represented in my medicine organizer. And I was out of it and had somehow not ordered a refill. So I got my refill and minutes after taking one, I felt more centered.

I have heard that withdrawal from Wellbutrin and Cymbalta (which I’m also taking) is a bitch. I’m not sure what I’m in for, but someday I’ll find out.

We make plans ~ God laughs. Or was that the other guy?

Eric is a roller coaster enthusiast. Until I met him, I didn’t know they existed and actually organized. He can tell you just about any detail of any major roller coaster in the US, even given only a brief glimpse on TV or the internet. So, although amusement parks aren’t my usual adult destination, we’ve been to a few together. The one I really like is Knobles Groves, in Pennsylvania. It is family run, the people are warm and friendly, the food is pretty good, it’s set in beautiful woods, and around this time of year, it hosts the Phall Phun Phest, a Haloween-y fun night for families and roller coaster enthusiasts.

On top of all that, I found that Tony Tiger, my teddy bear since I was a baby, whom I refused to leave at my Nana’s house, came from Knobles, where we had coincidentally picnicked as kids. My Nana had won him at the ball throwing booth, some time before I was born. So I’ve had him all my life, including sleeping with him whenever I was sad or single as an adult.

The plan was to make this trip a pilgrimage for Tony, back to the place of his birth. Unfortunately, the necessarily frenetic travel plans of planes and cars, festival reveling, and walking around the park, made the trip prohibitive for me. I had come back from California under an easy schedule a week and a half ago, and had crashed and remained crashed ever since. So the night before the pilgrimage to Knobles, I had to cancel my trip. Me sad. Eric  sad. Tony probably sad if he could talk.

So Eric took off on Friday morning and will return Sunday night.

Today while resting, I kept hearing Eric sounds ~ his feet clumping up the creaking stairs, his breat at the top, the hum of the electric toothbrush, music coming from the computer room. I called him a few times, followed by silence, then got up to find him ~ nothing. I realized I was hearing things and remembered being asked that when being treated for anxiety. This was it. I was crazy. I shakily made my way back to bed and pulled the covers over myself. I fell asleep, and a couple minutes after waking, realized it was a dream.

So I got my spookiness in after all.

Next year, Tony.

Cooking solutions

I love to cook. Especially today, my mom will be here for a visit in an hour or so and I’d love to be able to create some beautiful food for her, as I have in the past. Unfortunately, I can’t.

Not that I’m perfect when I do cook. Yesterday, I cooked some garnet yams (a great thing to cook extras and have for meals and snacks). Unfortunately, I mistook our unlabeled container of cayenne pepper for cinnamon, rendering the yams a compost item. So don’t do that. That was a confession, not a tip.

Often the thing that keeps me from cooking is leg pain (as it is today). Anyone with fibro knows what it’s like to rely on a family member to bring food or order delivery, or make something as fast and easily as possible and then go sit down, quick.

I’ve decided to order a bar stool for cooking times. Here’s the one I’m looking at:

http://www.overstock.com/Home-Garden/Kelford-Backless-Swivel-Stool/8134727/product.html?refccid=S2AGIYSF5RJKEZKFQL4GSEH5KM&searchidx=20

Also, isn’t it a bugger to know how to shop? To know when will we be able to prepare something, when? We do have to keep healthy food in the house. I’m not a fan of frozen dinners, although I have used them in the past. If that works for you, that’s great. What I’m doing now is going to a store with healthy, freshly made sides and mains. The protein mains sometimes are often overcooked for me. So I get (or ask my husband to get) healthy, tasty sides, buy a fresh protein, and quickly season and cook a the protein. If the selection is behind a deli case, I try it first to make sure I like it. I often adjust seasonings at home, but that’s quick. My favorite bought side right now is diced yellow beets with hazelnuts, feta, and mint.

Also of course, there is delivery/takeout. Once in a while I’ll get an all-out meaty and cheesy pizza. And that’s fine, once in a while. But even with pizza, we can get healthier by ordering it with thin crust, veggies with or without meat, and topped with arugula or other greens. Still yum! My favorite right now is from Vincente’s in Portland, OR: Spinachi et Formaggio ~ garlic and olive oil base, spinach, feta, Roma tomatoes, and Fontina. I have them add their organic lamb sausage. OMG that sounds good! Might order it tonight!

What are some of your solutions to eating healthfully and beautifully, without killing yourself to get there? Or to do anything else more easily?

 

Gratitudes September 27, 2014; or, Upswings and Downswings

Downswing

I’ve been on a downswing since I got back from Cali (leg pain and weakness; fatigue; headaches; upset stomach off and on; one small anxiety attack). I’ve been really sick the last couple of  days (running hot and cold, sometimes at the same time, with major sweating and some shakiness throughout my body; shaky hands; headaches; stomach pain and almost throwing up twice). I don’t know if I would have leg pain if I had been on my feet more. I’m not sure if this is about the fibro, Candida, or a flu or something.

Gratitudes

1. I spent a week in Cali a couple weeks ago. I stayed in SF with friends and went to an art opening for a water conservation group for whom I’ve done a bit of writing. Numerous genres of art connected people viscerally in the area with their water source, The Tuolumne River. Artists gave short talks, there was music, food and drink, and I saw a bunch of my friends I hadn’t seen for a long time since my move to Oregon. You can see some of the tres cool art here:
http://www.whollyh2o.org/services/standing-with-the-watershed/whatriverareyoumadeof.html

My friends even had a garden party for me on Saturday, so I could see more of my Cali friends.

After that, I went down to Mountain View and had a wonderful time with my grown kids. My son and I took a walk at Rancho San Antonio, a favorite hike in the Cupertino foothills. My son is 34 and we first hiked there with his kindergarten class. We took lunch and ate it at a picnic table in an old barn. There were lots of mosquitos, but it didn’t matter. This was a pilgrimage for me and my boy.  While I used to hike for 5+ hours in the hills there, the 20-minute walk to and from the barn was perfect for me. It was a memorable time. Also, I like that I took the risk of making the trip.

2. When I need it, I am well cared for and I’ve always known I am loved. I call my husband, Eric*, my PAM (Prince Among Men). He meets pretty much every need I have, including helping with my dad in assisted living; and I can trust that Eric* isn’t resentful because he voices the few boundaries he has and takes fun breaks once in awhile. Enter: my 86-year young mama, who takes the two-hour train ride to come and help. When I had my neck surgery, she came for a good amount of time, followed by my daughter, son, and friend, all from Cali. My dad and brothers are here for me in spirit, as they can’t make it here; but I have their love and support, as well as the same from other friends.

3. Today during a short meditation, I became very aware of the sounds in the house and outside the open window. My cats playing. The breeze through the leaves of the big old trees. (Hey, that ryhmed!) Cars whooshing by. Neighbors talking. Kids playing. I felt alive, calm, and connected to everything.

4. I practiced my Buddhist philosophy of noticing but not attaching to the pain.  I’m not perfect at it, but that’s why they call it practice. I had a Reiki teacher who passed from her second bout of cancer. At her memorial, one of her caregivers said that close to the end, my teacher had much pain, but little suffering. Such a great life lesson and it sure comes in handy.

5. Today (now yesterday) I watched the movie Are You Here. I watched it last night with Eric*. And I’m saving it for when my mom comes this weekend. It was beautifully written and acted, literarily tight (where one reviewer called it a confusing mess; another said it wasn’t funny ~ don’t these people understand ironic and sardonic humor?!) and engaging in every scene. Apt symbology and foreshadowing abound, and make it fun watching more than once. The theme is a universal truth and was well supported. My hands were waving around as Eric* and I talked about the film, and they would be now if I wasn’t typing. I think it’s one of the best movies of the year.

Small spoiler just for you:  Its universal truth is similar to the philosophy I mentioned in #3.

http://www.areyouheremovie.com

6. My chronic pain shrink has told me to think of fibro in terms of episodes, which has been another big help to me. We get knocked down, we get back up again, right?

*I added the apostrophe to Eric’s name because otherwise it was linking to his Facebook profile.