Thursday, November 19, 2009

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.

Tuesday, November 17, 2009

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

Wednesday, November 4, 2009

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:

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...


Tuesday, October 20, 2009

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'!

Wednesday, October 14, 2009


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.

Friday, October 2, 2009

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 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.

Sunday, September 27, 2009

can't sleep and pregnant kitty

I've been lying in bed since 8:30pm trying to sleep (very tired). My legs and feet have hurt all day and nothing has been helping - can't get comfy. I think I overstretched something in PT on Friday. :( I'm hoping a solid dose of my pain meds will knock me out soon.

Another thing that is keeping me up is thoughts of an abandoned(?) kitty that's made my backyard her home for the last week or so. I figured out yesterday that she is pregnant. She is a tiny Siamese. She'll let me get pretty close but won't let me touch her. She used to hop the 6' fence in my backyard but she is too big now to do so. She's been starving and I feel terrible that I didn't realize this sooner. I put some food, water, makeshift catbox (she is housetrained), and a "bed" on my back patio where she's been sleeping. She is responsive to my efforts in this respect.
It's been really hot here for the last few days, which doesn't help my worrying. She's clearly uncomfortable and the movements in her belly are big enough to think that she'll have the kittens soon. She's tried to get into my house, with success, yesterday. She appreciated the AC and seemed more comfortable physically. I left the door open for her today and she didn't want to leave. I have a cat already and keeping them apart is very difficult. Since I don't know anything about this cat, I don't want to get my cat sick. I thought the kitty had left my house but, hours later, I discovered she had been hiding under the couch (she camouflages well!). My friend and I shooed her out of the house out of concern for my own cat's comfort/health.
I've knocked on doors around the neighborhood to see if anyone is looking for her, but I've had no success. My concern is that she is from one of two neighbors that treat their animals poorly. The fact that she is pregnant is one indication that they've slacked off on good care.
Do I leave the cat outside and hope that she'll feel comfortable enough to have her kittens in the box I made (cardboard box with towel inside and "windows" cut into the sides for airflow and for lookout)? I can't catch her, so should I try trapping her and then isolate her in a room in my house? Do I call the county shelter to come pick her up? Neighbors I was able to speak with today, who live on either side of the "irresponsible" ones with lots of animals, said that they would not trust them to take care of a pregnant cat. The people who I think possibly own the cat, did not respond to my knock even though I could tell they were home. I did not look like a solicitor for sure. I don't want to come off as judgmental but I have a really sensitive heart when it comes to animals and mistreatment.
Oddly enough, I've been praying for strength to go into the local shelter to adopt an adult cat as a companion to my cat. Do I take this cat in? Is it wrong, especially if no one claims her? I'd get her neutered as soon as possible, and find good homes for the kittens (hopefully neuter them too beforehand). If I can catch her, I'd definitely bring her to the vet as soon as possible to check her health, see if she has a microchip, get her neutered, and update shots as needed. I don't think she's ever been to the vet (was just a kitten herself a year ago). I'd feel better letting her go if I know she can't have more kittens and is healthy.

Anyone with advice is welcome to respond. I am really torn on what to do.

Thanks. I'm going to try bed again now that I've gotten the kitty issue off my mind for now.


Wednesday, September 23, 2009

Movin' to Seattle

I've been reluctant to post on this subject but I think it is time... we're moving! This is a good thing for so many reasons but I am mostly excited to live in Seattle. Where we live now is a hot, dry, too sunny, miserable place during the 8 months of summer. We both love the winters here, which are wet and cool. I also miss my native New England and the Seattle area feels more like home.

Currently, my hubster is living in a rental in the Seattle area by himself until I can join him. I gotta say that living in two states sucks. He got a great job and is able to give up being self-employed, which is a good thing considering these economic times. He is less stressed and will now live only 5 minutes from work.

I am giving up a good job that I've had for 9 years, but my boss has agreed to let me stay on part time via computer and Skype to do the things I am best at - editing and grant preparation. It will take the new person a long time to pick up the daily duties I have and to learn my boss' personality, never mind these more specialized tasks. We are calling this a "soft transition". I should also explain that my boss is amazing and has given me a lot of flexibility (no pun intended) to work around my EDS issues, including letting me take 90 minutes from my day to go to PT twice a week.

I'll be able to work from home and not deal with a 30 minute commute every day. I think that will help my EDS and fatigue. 

I'm having serious second thoughts about my plan to help my boss. I thought I would be strong enough to live here by myself until the end of the year. We've had two really lovely weekends up in Seattle together, including a surprise birthday weekend in Victoria, BC. It's been sooo difficult to come back home without my Love. Now we won't see each other for 2+ weeks because of work deadlines. At least I have my cat, but even she is not enough.

All of our furniture is still with me at our house, but we are planning to ship it up to our rental in October. I'll stay here until ___ and then bring myself, my cat, my car, and the little bit of stuff I'll keep with me to our new home. We know we are very lucky to have this opportunity to move to Seattle but we also can't afford to sell our house, so we have to find renters. It is hard to think of other people living in my home, eating from my fruit trees, and clipping my flowers. It's probably the fear of the unknown as well - I might feel more comfortable with the tenants once we pick good ones.

I'm excited to meet some new EDS friends in Seattle. I've already found two EDSers I think I'll get along with, and one of whom lives not far from us. Ironically, I've just met two EDSers here in my current area. Perhaps God is using me to help them meet and provide support to each other - they both have young children (same age actually) with EDS as well.

I've got a lot on my mind that I'd like to share but it's all slipped away at the moment. My growling stomach is using all that brain energy! :)

Thanks for reading!

Monday, September 7, 2009

30 Things About My Invisible Illness You May Not Know: Ehlers-Danlos Syndrome

National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Ehlers-Danlos Syndrome, Hypermobility Type

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: birth, though the pain aspect didn't start until my teens.

4. The biggest adjustment I’ve had to make is: to my expectations of myself and what I can do with my husband, around the house, with my friends, for a career... 

5. Most people assume: I'm "normal" (read: not in pain, exhausted, etc)

6. The hardest parts about mornings are: waking up unrefreshed. Putting my painful feet on the ground. Wondering if any of my joints are going to act up.

7. My favorite medical TV show is: House, MD for the humor (the medical stuff is not always accurate though)

8. A gadget I couldn’t live without is: how do I choose? I think it would have to be my car. 

9. The hardest part about nights is: knowing I am not going to get enough refreshing sleep.

10. Each day I take ~15 pills & vitamins. 

11. Regarding alternative treatments I: have had various results. I believe they should be complementary to traditional medical treatment.

12. If I had to choose between an invisible illness or visible I would choose: Invisible, but my snarky answer is to say neither!

13. Regarding working and career: On a good day, I hope to go back to school for a Master's in teaching or acupuncture but I know there will be limitations on what I can do after graduation - like I can't handle a large class of students and would probably have to do special ed or tutor. I can never be self-employed and I don't think I can work full time. 

On a bad day, I don't think anything is possible and just want to hide under the covers. 

14. People would be surprised to know: I used to love middle eastern dance.

15. The hardest thing to accept about my new reality has been: the effect it has had on my marriage. I was diagnosed 6 weeks after our wedding and I've since had more pain and joint problems than ever before. I feel like I've let my husband down, though I know that is not true. 

16. Something I never thought I could do with my illness that I did was: create realistic expectations for my work performance with my boss with no repercussions. Help others with the disorder.

17. The commercials about my illness: what commercials?!

18. Something I really miss doing since I was diagnosed is: dancing.

19. It was really hard to have to give up: dancing. Cute shoes (just kidding!).

20. A new hobby I have taken up since my diagnosis is: blogging and being proactive with the EDNF.

21. If I could have one day of feeling normal again I would: spend the day in bed with my hubby.

22. My illness has taught me: to listen to my body. Also, to know who my true friends are.

23. Want to know a secret? One thing people say that gets under my skin is: "You are too sensitive."

24. But I love it when people: let me help out with projects that utilize my strengths without taxing me - I can be useful, creative, and maintain my boundaries. (I also have to say that I love it when people accept that I need to go home and sleep all day)

25. My favorite motto, scripture, quote that gets me through tough times is: "I love you."

26. When someone is diagnosed I’d like to tell them: it's not all in your head. AND That there is no such thing as an EDS specialist MD, you are the specialist who needs to educate your health care professionals (educational material and support are at

27. Something that has surprised me about living with an illness is: that I finally have a name that explains why I've had the problems I've had forever, and that I am relieved to have this diagnosis. 

28. The nicest thing someone did for me when I wasn’t feeling well was: make dinner and do the dishes! On a medical level, was to believe that I was in pain and work with me to find a pain med that helped take the edge off.

29. I’m involved with Invisible Illness Week because: it's a chance to get the word out about EDS, which affects 1:5000 people and is more common than people think. 

30. The fact that you read this list makes me feel: like one more person has learned that Ehlers-Danlos Syndrome exists.

Do you want to write your own "30 things..."? 

Get the scoop at!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at

Read Nkolika's blog - "An Artist's Musings: How flexible are you?"

I know I haven't been too active here but life has been a bit chaotic - most of it non-EDS related.

I found this informative post from a lovely woman - an artist and MD - in Africa. She found a video on "Snake Woman" (cringe worthy!) and provides a summary of EDS and hypermobility. She is also a very good artist (check out the link to her amazingly inexpensive artwork on Etsy).

Check out Nkolika's post here and watch the video.
An Artist's Musings: How flexible are you?

(Also read her other posts.)

Monday, May 25, 2009

When things are tough...

"I try to hold on to this world with everything I have
But I feel the weight of what it brings, and the hurt that tries to grab
The many trials that seem to never end, His word declares this truth,
that we will enter in this rest with wonders anew

But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering

There will be a day with no more tears
No more pain, and no more fears
There will be a day
When the burdens of this place
Will be no more
We'll see Jesus face to face"
Jeremy Camp "There will be a Day"

It's been a while since I've been physically and psychologically challenged like I've been for the last two month. I count myself lucky compared to so many but it's hard to get outside myself when pain settles in. When I am not listening to NPR I listen to Christian rock on the radio. The song above has been particularly comforting lately.

Great for medical research, including studies on EDS, NIH put out calls for applications with lots of money to offer for good grants but the deadline was incredibly short (~6 weeks!) and occurred at the end of April. My boss is the director of a lab and an institute that study genetic disorders and I am his assistant - I put the grants together and edit them. I'm not going to bother explaining the details but we put together an admin supplement, a Challenge grant, and our annual (May 1) Progress Report for the institute. We also had a big meeting of our Internal Advisory Board just before these deadlines - I have to run the A/V. I was very stressed out. For those of us with EDS, stress and hormones can play big factors in how well our bodies hold together.

Since the end of April, my left shoulder has been unstable. This is the one I dislocated several years ago. Hormones added their contribution and now it's been subluxed for the last 10 days straight. I'm at the point where I need to consider options, including having a stronger pain reliever (currently taking only tramadol and aleve). I want to avoid surgery and will discuss this with my doctor tomorrow. Everyone who cares about me has been suggesting surgery but it's not that simple in EDS. I don't know that it would even help. My MD may say that my shoulder doesn't need surgery, which would be a relief but then I worry about long-term pain/instability.

I've discovered I really don't like the attention a brace brings to the situation. I've had to wear a sling for my shoulder and everyone asks why and how, etc. It gets so tiring. Any suggestions on how to deal with inquisitive folks, including family who tends to worry?

My lovely husband has been stressed out about my pain and potential disability as well. I don't want to worry him but I also can't lie about my condition. There is so much impact on our relationship from my pain, inability/challenge to do things (including around the house), struggle to contribute to the household income vs needing to work less. ...and other more intimate stuff.

I am currently changing meds too. My MD wants to shift from Effexor to Cymbalta. I don't know if my incredible fatigue is from the meds or from the pain? Both? As the pain has gotten worse, my anxiety and depression has increased as well. When my doc and I started the switch in meds, I was doing ok mentally and my pain wasn't so bad. How can you know when the body is going to crap out on you?

I meet with my PCP tomorrow and a therapist on Friday. I'll see what they think.

Thanks for listening.

Friday, April 3, 2009

Just a quick update - hi

Hi lovelies,

I've been a bad blogger for the last while. Life, EDS, work...who knows. I just haven't made the time.

Mostly, it's been depression and anxiety taking over. I have a new shrink that I like (Dr. H). She takes the time to actually sit and figure out the best strategy for working with these issues. She doesn't double book appts and spends 1/2 hour with me. Dr. H also suggests things besides meds to help me deal with stress and anxiety. I hope I can get an appointment with the therapist she suggested too. Meds and therapy have always worked best for me - the most recommended strategy for effective treatment of depression and anxiety. Hmm, I actually fall into a "normal" category for once! I take two meds - she's adjusting one to handle the current acute problems and then will taper the second one to get me off it and on to Cymbalta. Dr. H thinks Cymbalta will help with my EDS pain - I've also heard that. We'll see. If it can eliminate some of the side effects too, that would be great!!!

I've been thinking about a lot of friends lately - some I know in person, others only virtually. Why do I struggle to reach out to people? When I have the energy, I don't have the time (or it's while I am at work and can't talk). When I have the time, I don't have the energy. Nasty cycle. I hope you know I am thinking of you, ok?

Got some sort of GI bug yesterday. Might actually be able to go home early from work today. Wishful thinking. I'd rather work a full day and NOT have this bug though.

It's been exceptionally windy here for the last week. Can't complain too much. It's been over 60 degrees (high 70s) for a couple of weeks now. Spring is here in NorCal. I miss my home back east but I don't miss the weather! Ok, I do have one complaint. The wind blows all the crap (dirt, pollen) from the north of this loooong valley down to where I live. Makes it hard to breathe and/or makes those with allergies miserable! I'm in the former category.

Wishing you all well and happy Friday. Until next time...take care!

(PS: the font I am using here is called trebuchet. Read about the real trebuchets here: - kind of strange that someone would name a font after this war machine.)

Thursday, March 19, 2009

I love!

Hi everyone,

This is a silly post but maybe it will save you time or stress when you are forwarded a frantic email or text message about some dire event or nasty stuff in the water.

I almost always check and/or Google to see if there is truth in an email or text someone just sent me, that's also obviously been forwarded by 20 other people before them, that purports something horrible will happen if... or did you know... or, like the latest one about impending doom... at Wal-Mart!

This important tidbit about future shootings at Wal-Mart was actually passed on verbally by a well meaning friend who had gotten a text from another friend who had... and you know the rest. While on the phone with her, I immediately checked Google news AND Snopes to confirm my suspicion that this was indeed a hoax/rumor.

I like that the Snopes folks also explain things logically, whether true or false, and will use scientific data as well. Here is an interesting example about cell phone use in hospitals.


Wednesday, March 11, 2009

Comedian Dustin Woods

Hi everyone,

I just found this EDSer, Dustin Wood, online via the video below. I'm not into stand-up comedy, but he is actually pretty funny and gets the word out about EDS and POTS.

Funniest Redneck Stand Up Comedian Ever Dustin Wood Video

Dustin also has a lovely cause to help people with depression. Find out more about the "Feel Better Letters" on his myspace here:

Keep up the great work Dustin! Depression really sucks.
Sending some more smiles out there,


Thursday, February 26, 2009

"Women who are sick..."

I was reading Laurie Edward's blog "A Chronic Dose: A Chronic Illness Blog" and found her post "On Work and Chronic Illness". In the post, she links to an article that I then read and excerpted from below.

"Women who are sick find themselves in a triple bind: unable to excel at their career because they are sick; unable to take good care of their health because they are working; unable to quit because they need the health insurance they can get only through a job." From "Ill in a Day's Work" by Donna Jackson Nakazawa

Wow, did that thought hit home! I work in a job, not a career. I'd love to go back to school to get a teaching certificate and Master's degree in Intercultural Education. The economy is the primary reason I am not moving forward with classes part time, but the ultimate issue holding me back is can I do it? Classes are not the problem; I worry about the teaching internship and student teaching a whole class. Tutoring and small groups are more my style but gotta jump through the hoops first. Then inertia seems to take over when I am not feeling good -- everything seems overwhelming and the daily grind at ye ole desk job is something I can always fall back on (helps that my boss lets me sleep in or work from home sometimes).

Just thinking of leaving this job sets off tons of stress. Yet working full time is painful. I think I mentioned in a previous post that my productivity at work is ~20% these days. I don't think I'd qualify for disability but my quality of life definitely suffers because I don't get enough rest.

I carry our health and dental insurance through work. My love is self-employed and he pays the majority of the big bills. He used to have his own health insurance but it was so expensive and he could get on my work policy for peanuts. It's the least I can do to handle our insurance and try to keep the house from complete disaster (easier said than done!).

Ever get the feeling that life is a trap? This point is where I have to give to God and trust that I will be where I am needed most. Sigh...

Tuesday, February 24, 2009

End of February update

February is a short month to begin with but it just FLEW by!

I've been wanting to post but have had various reasons why that hasn't happened:
1) feel crummy - shoulder, feet, fatigue
2) brain fog is worse than usual - really can't concentrate or follow logical steps in completing tasks
3) work has been sapping all my energy
4) worked on a project for the EDNF
5) visited family two weekends in a row
6) feel crummy

Here are the topics I've wanted to post on but haven't had energy to:
1) no more tape for me
2) anxiety about shoulder surgery - how to avoid it
3) brain fog - depression? pain? Vit D? not anemia
4) summary of interesting article about changes in the brain from chronic pain
5) sad about not having my own child
6) thinking about the future - education, healing ministry, disability

I can't think of anything else at the moment. I just want to go home. It seems like I get maybe 2 productive hours out of the 8 at work these days. Not such a good average. Sigh.

Hugs to everyone I love and to those I've only just met.

Wednesday, January 28, 2009

The Stick

I just bought the coolest tool for tight muscles!!! It's called The Stick. In my last post, I explained a bit about hypertonic muscles, where some of my muscles are so tight that they limit mobility. My hypertonic muscles are in my neck, my calves, and my hamstrings. I can still touch the floor despite very tight calves and hamstrings though!

In PT a while back, I was introduced to The Stick to help calm the hypertonic muscles in my leg that limit mobility in a bad way. I was hooked but didn't get to use it again after that. Then my PT used the Stick again last week to help relax my trapezius muscles and their nasty trigger points. (BTW, a great book on trigger points that you can use at home is called The Trigger Point Therapy Workbook) I don't typically buy something like this unless I feel a true difference with it and I've wanted it for a long time, so I got it the other day. I worked on my legs for a while (20 light rolls per segment) on Sunday and felt some relief. However, I also seem to have overworked an area behind my right knee! It feels bruised but there isn't one. Seems I rolled over some nasty points on a tendon or ligament. Felt painfully good at the time I worked on it, but now I know to take it easy! Can't figure out how to work on my traps muscles without help though. I'm hoping that consistent work on my legs at home will help with some of the puffiness and venous insufficiency/blood pooling issues I have from squishy tissues. Get some qi moving!

Thursday, January 22, 2009

Shoulder/neck stuff - taping and mobility

Taping #3 definitely helped a lot with my shoulder instability. Apparently my left shoulder blade deviates from the spine more so than the right one and that instability contributes to problems with my shoulder itself. I can't do any more taping for a while because the skin on my shoulder is raw to the point of peeling. I think it's been two weeks now since I took Tape #3 off and my skin is still irritated. I definitely don't recommend taping for some one with classic type unless the person is very specialied in tissue fragility! Gotta love EDS!

We're working on shoulder stabilization exercises in PT. The trick is to do so without engaging the neck muscles - see below!

My PT has been doing some intense work on my neck due to its noticeable lack of mobility - who'd a thunk?! After treatments of deep massage on my trapezius muscles (ones running across base of neck out to shoulders), I tend to be really spaced out and a bit confused for the rest of the day (or a few days thereafter). I came home early from work the other day because I was sooo fatigued and couldn't concentrate (more so than normal EDS); just wanted to sleep for a few. I laid down on the couch, got comfortable and didn't wake up until my husband came home 2 hours later. I was really confused about dinner and couldn't figure out how to put things together. It was very strange. This all has something to do with the nerves being stimulated in ways they haven't been in decades! Not kidding - that's how bad the hypertonia is!

We've been doing some neat exercises on the floor to help my core and shoulder muscles without engaging my neck muscles in a way that causes problems. I basically roll/flop around on the mat (floor mat, not my PT Mat)! I have to go from facing up to facing down without moving either my upper body or my lower body. It is sooo hard and I have much more trouble rolling my upper body from left to right due to weakness in that sohoulder. You'd think rolling on the floor would be easy but trying to use only the upper body muscles or lower body muscles to move is sooo darn hard! Wish I could describe this exercise better.

Tuesday, January 13, 2009

Adventures in Taping #3

I took my 2nd round of tape off two days ago. My shoulder was a bit less unstable but as soon as I took the tape off, my muscles running along the scapula up to the neck went into spasm.

Today was PT and Mat had been at a seminar over the weekend. I love this PT place because they are big on Continuing Education. It's fun to see them trying out the new techniques and assessment tools they learn. So I got a functional assessment first thing. He had me bend and move in certain ways and actually looked for where I was tight/restricted, not where I was too flexible. Always knew my hamstrings and calves were tight and my neck is chronic, but I didn't know that my neck stiffness is worse than the average person.

The seminar instructor said that in order to deal with instability issues, you have to deal with mobility issues first. We had not looked at me as having mobility issues other than HYPERmobility. Now that it is obvious my neck is very problematic, my PT is going after that problem. He also thinks that what we do with the neck might help with tightness further down my body (legs). This idea comes from over-stimulation of the nerves in the neck area taking over the impulses that are supposed to go to the legs, I think.

We proceeded from the assessment to the table for more taping. Interestingly, he taped the areas I had felt needed taping. His thinking is that the shoulder instability is actually from problems with the shoulder blade being too loose. I have an unusually small set of wings, I mean scapula, but plenty of room for big muscle spasms! He taped a right triangle on my back. A length of tape from the top of my shoulder almost to my C7/T1 vertebrae, 90 degrees to a length of tape running straight down my back alongside my spine. The connector stretches from the top of my shoulder, across my scapula, and connects with the other tape at about T11.

The first try didn't last more than 20 minutes before it pulled off from the bottom (closest to my butt). Fortunately, I was still at the gym and he was free for a few minutes to re-tape. This one is still holding.

I have muscle spasms but not as bad as before AND my shoulder feels stable. The added bonus is that the tape pulls my posture into better alignment and I can breathe! The true test is how I sleep tonight.

More tomorrow!

Saturday, January 10, 2009

Adventures in Joint Taping #2

I'm avoiding the tons of housework I have to do for overnight guests arriving later today. I'm not feeling good and waiting for my meds to kick in. Perfect time for a post!

I went to see my PT on Thursday, two days after the first shoulder taping. The 1st tape stuck really well and I had only taken it off that morning in the shower. I learned a trick too - instead of pulling the tape up, which pulls my skin up, I start the tape by pulling up but then push the skin down to release it from the tape. Both less painful and less traumatic to my skin. My skin did surprisingly well.

I explained to Mat that the tape helped a lot but one of the strips (in front) could have been tighter. I also mentioned that it felt like my shoulder blade was pulling up and my shoulder was falling forward - would it make sense to tape my shoulder blade down too. He said my feedback made perfect sense and we'd proceed with taping the shoulder again that day. So, back to the ultrasound (the thing turned off for a few minutes making the 7 minute session into a 12 min one!), e-stim and ice. Taping occurred just after the ultrasound.

Mat put tape in the same two places as before but tighter and then added a strip that went diagonal from my shoulder all the was past my shoulder blade almost to my spine. It felt weird at first but definitely provided the stability I was lacking last time.

Next was the e-stim and ice. I had the tech turn the stim up higher this time. While I was lying there, I realized why one spot where the sticky "nipple" was placed last time hurt so much - it was directly on an acupuncture spot! Lung 1. They didn't put the lead on the same place this time so no pain. I got to relax there for 15 minutes. My neck hurt and I had to ask for a rolled towel to put under it, despite the pillow I was on. Much better.

Two days later and I feel so much better. My taped shoulder has brought my arm up about 1/2 inch! I definitely feel the squishiness of the right shoulder now, though that one is not as problematic. I think now that my hormones are shifting back to normal, my left shoulder should tighten up again. I'm not interested in pulling this tape off so I'll wait until it starts coming off of its own accord. Yes, I can shower with it - I'm not going to be stinky just for some tape! :)

Tuesday, January 6, 2009

Two useful blogs I really like

This is going to be a short post because it is late and I have to get up early. I just wanted to note that I have discovered two blogs I find incredibly useful and so relevant to my life right now.

In sickness and in health: A place for couples dealing with illness: Just exactly what the blog title is. I like the authors style, and her insight into couples' interactions when chronic illness is in the picture is poignant. She is hosting the upcoming Grand Rounds and her topic is connections. I'm thinking a lot about EDS-related "loose connections" at the moment with my joints, but connections with friends, social activities and other stuff in my life has really changed since pain has become a daily visitor.

How to Cope with Pain: Again, title and subject are one. Insightful, interactive, proactive, and engaging blog. She tends to have really interesting links as well.

I want to write more but I'm too tired to think. You'll just have to go to these blogs and find out for yourself what they are all about. TTFN!

Muscle taping for instability

My first experience with taping a joint to keep it in place has been interesting thus far. My left shoulder, the one I dislocated two years ago, has been bothering me for a couple of months and got progressively worse over the holidays. For the last several days, I've been taking my Aleve/Tramadol mix around the clock to manage the pain. It feels like my arm wants to fall out of the shoulder socket if I let it hang.

So, I went in to PT today and had to tell him I couldn't do my usual workout. We've gotten into a good routine over the last year and I am to the point where I am in less pain and feel stronger/more stable now than before working with Mat. He is the first PT who a) hasn't hurt me during sessions and b) hasn't given up when I have flares that take me out of commission on occasion. I am very grateful to have been directed to this particularly good PT who understands that hypermobility needs stability and slow strengthening, no stretching and no major weights right away.

Anyway, so Mat is good when I have something out of whack because we spend the whole session dealing with getting inflammation/pain under control. Today is the first time at PT that my shoulder has been so painful I was close to tears. He did an assessment, which was not fun but gave him an idea of what muscle/area needed the most attention. He said something about the 5th rotator cuff muscle? The gleno-somethingorother attachment point. I laid down on the massage/treatment table for ultrasound. He noted that I have a sulcus, which is when the arm (humerus) separates a bit from under the glenoid (bone above the shoulder) creating a bit of a groove between. This sulcus can be an indication of instability.

After the exam and ultrasound, Mat got down to taping my shoulder. He didn't use "kinesiotape" but some heavy duty flesh-colored tape. Of course he had to put a less sticky layer underneath to protect my skin but we'll see what happens when I try to take the tape off. (I didn't have good fortune when I had my heart monitor for 24 hours and had to take the circle things (look like nipples!) off. Ouch and nasty skin afterwards. I had a round patch of raw skin just center of where a v-neck shirt shows the chest!) I had to hold my arm in such a way that I could push my shoulder into place while he put the tape on - the point being that the tape would hold my joint together when I let gravity pull on my arm. It worked! I felt relief right away and this suprised me most when I laid down on the table again for an ice and "stim" session. I know my shoulder can separate when I am sleeping but this taping method showed me how much my shoulder moves around not just when I am upright.

The PT assistant put more nipples and leads on points around my shoulder and new tape. These connected to a machine that sends a current to the leads. They slowly turn the power up until you are uncomfortable (which can feel like bees stinging) and then back off until you are comfortable with the tingling sensation. I guess the stim is supposed to help calm the muscles? Then he packed my shoulder in ice while I was laying there. I could have fallen asleep.

I've had pain off and on since the session earlier today but the taping has helped overall. Mat says I can leave the tape on up to 24 hours. I am accompanying hubby on a business luncheon tomorrow in Arizona so I had to think about what I am wearing so I can keep my tape on! I wish I had known about this technique sooner, but I guess that issue of "sooner" is going to have it's own post sometime since my whole life with EDS has been about "if only sooner..."

Can you be a tape junkie? I think I could tape up so many body parts right now! Everything feels like it wants to go in different directions these days. At least hubby feels like crap right now too, so I don't feel too bad for being a bit grumpy in pain. But truly, I am amazed that something as simple as tape can make a difference! I'm hooked.

Sunday, January 4, 2009

Purpose for posting

I've never been one for keeping journals but I am hoping I'll be good with this blog. I suppose I need a purpose for writing to stay interested so I've decided to use my Ehlers-Danlos Syndrome (EDS) diagnosis as a reason to post regularly. One of my big interests is in current research on EDS and I hope to provide snippets from articles I read over time.

What is Ehlers-Danlos Syndrome?
It's a genetic disorder (born with it) that affects the glue holding our bodies together. Collagen, that molecular glue, is defective in those with EDS so we have more elasticity and less strength in our connective tissue (tendons and ligaments primarily). The most basic symptoms common to every one with EDS are loose (hypermobile) joints, stretchy skin (usually soft), and fragile tissues. There are six main types of EDS.

What type of EDS do I have?
I have hypermobility type. My joints are extra stretchy and can go beyond the normal range of movement. Many of my joints don't like to stay in place; they don't fully dislocate but partially dislocating can be really painful too. I dislocated my left shoulder two winters ago and have recurrent pain there. I have very soft skin, look younger than my age, and I bruise very easily. I'll go into more details over time but a great resource is the Ehlers-Danlos National Foundation (EDNF). I might shorten my type of EDS to HEDS with the H for hypermobility.