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.

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.)