Crow Time

I love sunset. I used to love it when I could witness spectacular sunsets in Western Mass. We don't get those so much here in the Sacto basin. However, we do have crow time at twilight.

It is quite magical to see hundreds of crows flying to their night roosts in Sacramento and Davis. A steady stream of these intelligent birds comes in like clockwork from the daily forage in the fields - bunches of birds from this field and that one converging and calling and greeting each other. Then the story telling begins. The members of the congregation call out their adventures of the day from amongst the trees they call home.

Beware of your car if you should be so unlucky to choose a spot under one of these trees! You will be laughed at by your fellow townspeople when they see the evidence of your mistake. We've all done it. Cars bespeckled with white splotches of crow poo.

When we have the inevitable winter foggy days (tulle fog - low and extremely dense), I look out my office window to wistfully witness the occasional crow emerging from the depths and disappearing again like a smudge of a ghost.

I love crow time and I will surely have to post about bat time in the future. Some call dusk the magic hour.

The EDNF needs help - please

The Ehlers-Danlos National Foundation, a group I highly depend on and gladly volunteer time for, is another non-profit struggling in this fiscal climate. I, and others like me who deal with this underdiagnosed and mismanaged condition, can't afford for the foundation to fail due to lack of funding.

What the EDNF does for me:

• creates a safe place to ask questions about EDS - to understand what is going on in my body
  
• provides a wealth of resources - Medical Resource Guides, Loose Connections, medical articles, etc
  
• helps me educate my doctors and medical professionals about this strange disorder
• allows me to advocate for others who need help finding information and connecting with medical professionals in my area
• creates fun and invaluable learning conferences where I can meet others with EDS and listen to professionals present the latest findings or discuss ways to treat our common problems
• gives me opportunities to use my skills and interests to help others
• creates space to form long-lasting friendships
  
• and so many other things I can't think of right now!

As Eliot Chack, on the EDNF Board of Directors, writes so well:
"Please help sustain our community so it can continue to educate caregivers, patients and their families and carry on the call for further research funding. If you can only give $10, $15, $25 or if you are fortunate enough to be able to give more please do, any amount will help a great organization helping families like ours. Please click below to donate, and thank you for your support." 

I've donated. Can you? Please? 



 

"Spotlight: In a world of hurt" - UCDavis Pain Management

Hi all,

I feel that this spotlight on pain and pain management from the UC Davis Medical Center really deserves some attention. Though the video does not discuss EDS, the topic is critical in these days of medication addition vs dependence. Also, Dr. Fishman is an amazing physician and has been trained to understand EDS by one of our most knowledgeable EDSers, Maggie Buckley - Advocate Extraordinaire.

"UC Davis gains ground in war on chronic pain

Addiction to prescription painkillers now outpaces illicit drug use as a public health problem in the United States, affecting people from all walks of life — not just celebrities like Michael Jackson, Anna Nicole Smith and Elvis Presley.

UC Davis is at the forefront of addressing this growing problem. In an eight-minute documentary produced for UCTV, top experts explore why prescription drug addiction is on the rise and how the problem can be stemmed.

You’ll hear from:

• Scott Fishman, one of the nation’s foremost pain medicine experts, about which painkillers are most often abused, who is most likely to abuse them and how prescription drug addicts obtain their drugs.
• Richard Kravitz, who studies the health care system, and Michael Wilkes, known for his innovations in medical education, about the role that physicians play, and
• Professor Prasad Naik, an expert in marketing, about how pharmaceutical advertising contributes to the problem.

You’ll also see inside the UC Davis Health System’s renowned Pain Medicine Clinic, and watch as pain medicine specialists use the latest tools to attack the problem of pain for thousands of Northern California residents."

Video and story link

Videography by Ken Zukin; produced by Paul Pfotenhauer

Stu Garlicson

Not a real person or even thing - just words stuck in my head. :) 

It's 12:40 am and I can't sleep tonight. Don't know if it is because it's been a long day of a long week, stress, or the full-ish moon. Sleep is just beyond my reach despite plenty of snooze-inducing pills in my system and earplugs. So I write...

I tend to be my most prolific just before bed. Anyone else have that phenom? It's often nothing I can capture in writing, but the poetry is still there. 

So many things going on and several I can't yet say have been solidified. Living in a state of minor chaos and uncertainty but all stems from a place of love and striving for peace. I will let you know when I know. 

My sweet brother made a comment about my list of blogs I follow - along the lines of it being a reflection of where I am in the world these days. Wondering at the level of pain I express, etc. True, I do follow EDS and health-related blogs, but I have two primary reasons for doing so. 1) There are so many people who don't know about EDS and how much support and good information is out there. I see my list as a resource for those new to the idea of EDS, who are searching for anything that will help them understand what is going on in their lives. I list what I was looking for when I first got diagnosed. 2) I feel like I am an advocate for this bizarre syndrome that affects so many people in so many different ways. If you have it, you have to know about it to get the care you need. Maybe my collection will help someone somehow. A side benefit is that so many of these people are really interesting. :) 

I just noticed that I've been wearing a larger than usual caretaking hat lately. My husband is #1 for a variety of reasons I can't explain right now. My boss, as issues relate back to my husband that might have an impact on my work. A menagerie of cats... 

I have my lovey cat, Aubrie, two young sisters, Luna and Ruby, and a Siamese that doesn't live in the house but camps out at my back door. As for the cats, my husband can't stand the sight of Ruby because she doesn't have a tail. She is the one I'd choose between Luna and Ruby because she has a more submissive personality that suits Aubrie, she is interested in reaching out to Aubrie for play, and I adore her. Luna is beautiful, cuddly, trouble (she can open doors with latches), and doesn't understand that kitties don't go on kitchen counters. She is dominant and is more difficult around Aubrie, which stresses my baby out. I hope I can find a good home for Ruby in this sad state of animal abandonment and full foster homes. I'm trying to train the sisters so they will grow into good kitties. Both girls seem to have two layers of fur and Ruby has traits of manx in her. Makes me curious where some of their heritage came from.

The Siamese is back. She has a habit of coming by around 9am and after dark in the evening. In the mornings, she comes for food. Although someone put a flea collar on her and seems to have tried to take her in, looks like her bad temperament got her kicked out of that new home. She has a mean, defensive side, though she is pretty desperate for affection. She's clearly been neglected for a while - poor fur, long nails that look like they are becoming a problem, and so skinny you can see her ribs/spine. She is hand shy and the claws and teeth come out when she thinks you are too close or you try to give her food when she is super hungry. Don't know why I seem to be attracting all these cats lately. Hubby is NOT happy.

I'm avoiding talking about my husband and boss for now, but let's just say that I had to cancel the movers last week. 

Facebook is evil but I recently signed up for an account. I linked my blog to my space there so perhaps EDS and my followed blogs will get more attention. I've managed to find two lost cousins and some old friends. Lots of memories there. It's weird how FB works in that there are so many connections I didn't realize I could find. 

I would love to work a few hours less per week. There are many things I'd like to do with my time. Facebook kind of ties into my interest in geneology. I'd like to do more research into EDS and be able to share my thoughts on some scientific articles with you. Nevermind being able to have early dinners with hubs and catch up on emails/ phone calls, and other friend/family related stuff. Plus I just need some more time to sleep/rest. (funny considering my current state of sleeplessness)

Things are generally under control health wise. My slipped rib is getting better and only bugs me every few minutes rather than all the time. It's on its way to bye bye land.

I had a great evening with my younger kiddo. She came home from college for a day so we could go car shopping (her car is dying). Pops wasn't feeling well and went to bed early. Since K was staying over, she and I spent time eating ice cream, talking about life, and crocheting. Well, let's say that she was crocheting and I was making a mess. The cool thing is that she taught me how to do a basic crochet stitch, which I was doing completely wrong. It's fun when your kidlet wants to teach you stuff. 

I'm reading an interesting book that's been out a while, "Eats, Shoot and Leaves", and it usually calms me for bed. Not tonight. It's a really cool book on punctuation, funny to boot. I'm fascinated by editing right now. I've discovered it is something I am good at and enjoy doing. There are things I need to brush up on like proper use of colons. I primarily edit scientific stuff for work, which has its own style, making it a bit challenging to know what is proper for general writing. I, of course, don't pay much attention to punctuation when I am blogging or emailing. This phenomenon is changing puncuation and grammar usage, interestingly enough. I like the book also because the author talks about some of the history of various marks. Neato. 

Does anyone know where the phrase 'cool beans' came from? My dad says it and I find it coming out of my mouth on occasion when I get tired of the other words/phrases in common usage right now. Ha ha! I had to look it up. No wonder my dad uses this phrase often:

 http://www.urbandictionary.com/define.php?term=cool%20beans

Looks like my battery is going to conk out before I do. Sigh. 

Thinking of: P, Barb, K, Angel, Kayla (bubble girl), grampa, my sis, JB in India, my boss (though I'd rather forget we have a grant due in the morning - oh, that's a few hours from now!), Dr. Yo, God, Aubrie, lilac lady, G, Dad, homes for kitties, sleeeeeeeep...

ttfn

since the down spell

I got through the down time I was having a few weeks ago. Seeing my husband that weekend and getting my meds sorted out helped a lot. Still having some ups and downs - cried over a dropped baked potato last night (was my dinner and didn't have another one to bake). Been under a lot of stress as I've mentioned before.

An update on the Siamese kitty I was concerned about - she showed up the other night, as she likes to do when my kitty is by the back door, and had a flea collar on. I feel so much better that someone is looking after her.

I've become foster mom to two 6mo old kittens from our neighborhood. They've been hanging out in my neighbor's yard and came to my yard to eat food I'd left out for the Siamese. They are both unneutered girls from the same litter. The only ways you can tell that, though, the similarity in their faces and that they are both gray. Luna is the 8 pound dominant female (below). Ruby is a petite 5 pounds and has no tail (manx-ish; top). My husband wants to keep Luna so I need to find a home for Ruby. All of the shelters in our area are not accepting any more cats. They are completely full and have even more cats in foster care. So sad! 

It's going to be hard for me to split the girls up but we already have a lovely older kitty (8yo) Aubrie and she is completely overwhelmed by the terrible twosome. Sigh.

I've taken the girls to the vet for check ups and they are both healthy, thankfully. I think Luna will be going into heat soon so I need to get her fixed. Ruby seems to be underdeveloped socially so I'm working with her to hopefully bring her up to speed. They are both litter trained, which is nice. Oddly, or coincidentally, or unfortunately(?), there is a very friendly male cat in the neighborhood who lives across the street from the street's mailbox and has a striking resemblance to my kitties. He likes to follow me home and get lots of scratches (he drools though - blech). His meow is also high-pitched and soft like Ruby's. My guess is he got someone else's cat pregnant. The girls are not feral but they are WILD around the house like the crazy kittens they are. They are a lot to handle and it seems someone was not interested in doing so. Now that they've been treated for fleas and have regular food, water, and shelter, they seem quite happy.

I am most concerned for Aubrie, who is regularly terrorized by one or the other of the kittens. Ruby likes to block Aubrie's way through any door or hallway, and Luna loves to bat at Aubrie's tail when she is eating (I figure Luna is used to Ruby's lack of tail!). I've kept Aubrie in my room at night so we have some peace. I am also experimenting with keeping the kittens in a room together so Aubrie can freely roam the house again (good plan so far). I'm just waiting for Luna to open the door though - the doors are handles not knobs, and Luna jumps up and pulls down on the handle to open the door. We'll see when I get back home! Yikes!

It's been an interesting journey with cats lately. I've wanted to be a foster mom, just didn't expect it to be for kitties! Well, they do keep me distracted from the loneliness at home without my husband. A project of sorts.

Not much to report re: EDS. My fingers hurt from the change in weather and my neck hurts when I wake up. I got a new nightguard for my teeth/jaw. I'm still adjusting but I think it will help save my jaw from further deterioration (not good on one side). I guess the thing that bothers me most is my mood and a lot of that has to do with my current circumstances.

I am really looking forward to meeting Niki and Nicole in Seattle. I think there is a lot of potential for friendships that might make the transition away from CA a bit easier. Just a few more weeks (~6?)!

Thanks for all your warm thoughts and I want you to know they've helped. Hugs to my 'interesting people'!

Update

So, I managed to get my PCP to send in an order for 4 days of meds since my psych was out of the office. Did you know that Cymbalta is $7/day?!!! I don't know how people without insurance manage. The order from NextRx was in my mailbox when I got home that Friday night so I was covered no matter what, thank goodness!

I had also picked up my husband that evening for a surprise visit that weekend. I have to say that being with my husband really helped my depression and anxiety. It had been 2 weeks without seeing him.

It was my step-daughter's birthday the following week so we spent Sunday with her up at college. We had a nice lunch and took a lovely walk. She is such a love.

My pain meds make such a difference in my state of mind and cognitive clarity.

So, the stress of work and living apart, not taking my pain meds regularly, and other pressures seem to be contributing to my anxiety. I'm trying to take a bit more control over several issues and it seems to be working.

Just wanted to give you an update. Thanks for the warm thoughts. I hope to get back to some of you regarding your comments - it's taken me a while to get on track from my funk.

Anxious and depressed

I've always struggled with severe anxiety and depression but have managed with meds and other coping mechanisms. I've been going through a tough time for the last few of weeks with a resurgence of "could care less" and wanting to hide under the covers and sleep all day.

Every year for the last 5+, I get a medication-resistant depression/anxiety spell that lasts from August - November. It is not SAD, as I don't have this messiness in the middle of winter. I started meds last year to work on treating this specific type of depression and it has helped dramatically until now (the end of September).

There are several factors that have changed in my life recently (last few months) that could easily contribute to my feelings.
1) my husband is living in another state for a job
2) I'm on a new med (switched from effexor to cymbalta)
3) I can't stand meat - I'm completely grossed out by it
4) I'm more sensitive (empathic) since switching meds (this issue went away with effexor)
5) two of my husband's immediate family members died during the summer and now my grandfather is dying

I am irritable, exhausted, unfocused, am not eating right (though I take my vitamins), don't sleep well (worse than usual), want to cry, don't want to do anything I don't have to (including waiting as long as possible to do laundry, food shopping, cleaning the house, and other essentials), and don't want to reach out to anyone. I've also been having horrible dreams this week.

The authors of a recently published letter (PDF is on the EDNF.org web site) in response to an article on depression symptoms, states that virtually every symptom described in the article is also present in EDS. Yes, there is a higher prevalence of depression and anxiety in people with chronic pain, as well as those with family members diagnosed with depression. I'm 90% sure I've inherited my EDS from both sides of my family, and those with the stronger EDS symptoms are the ones with worse depression (or vice versa - chicken and egg hypothesis).While the published letter gave me so much hope because the psychiatry field is hopefully going to recognize EDS some day, it doesn't help me in this moment.

I am super anxious about my medication. I sent my prescription to a mail-in service (NextRx) and have been given notice that the meds are in the mail. However, I am now officially out of meds as of today and it's Friday. I am freaking out about the possibility of going through the whole weekend without meds, if they are not in today's mail! I just called my Psych MD and found out she is not in the office on Fridays and will not be able to call in a script for only 4 days of meds until Monday. Those who take any long-term drugs like this know we can't just stop taking them. A co-worker suggested I call back and ask for the physician on call who might be able to help. The receptionist I originally got was basically treating me like "so what?" I don't think she's ever been on medication or else she would not have responded to me with such attitude.

I got an idea just now. I think I'll call my regular MD to see if she can call in meds for me! Ah, that would ease my mind. She knows I am not crazy and am not a drug-seeker.

Hopefully this depression will end soon. I haven't seen my husband in two weeks but he surprised me yesterday by telling me he is coming home tonight!

I am not a good diary keeper, but blogging seems to be helpful. It is a bit strange that I can put things out there to complete strangers. Thank you for listening.

May you have a bright and lovely day.