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
Sunday, September 27, 2009
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.
Thanks for reading!
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! :)
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 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
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.)
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.
~e
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
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: http://en.wikipedia.org/wiki/Trebuchet - kind of strange that someone would name a font after this war machine.)
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: http://en.wikipedia.org/wiki/Trebuchet - kind of strange that someone would name a font after this war machine.)
Thursday, March 19, 2009
I love SNOPES.com!
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 www.snopes.com 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.
:)
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 www.snopes.com 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.
:)
Subscribe to:
Posts (Atom)