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

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 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.

:)

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:
www.myspace.com/comedyforacause

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

"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...

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.

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!