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.

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.

TTFN,
~e

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!

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 www.EDNF.org.

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 invisibleillnessweek.com!

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 www.invisibleillness.com

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.)

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.
~e