Trip around the Sun

I'm 33 years old today.

I am pleased with  my success in my goal to, one of these days, become old.  :)

This was by far, NOT my most graceful orbital journey, but it's been made and ended well.  At the start, I was still a pretty emotional wreck from being forced to begin my daily trek from my most favorite job, as a stay at home mom, to the one away from home- which isn't a bad job- just not my most favorite.  On this end of the trip, I'm more confident in my steps and in my place on this earth, my kids have survived more courageous and more confident as well- so I guess I'm jugging both jobs satisfactorily- thank God.  

On to the next trip; I pray that this one is a bit more blessed; more smiles, more laughter, more love. 

:)  

<3

My Dear Friend sent me a pack of Garbage Pail Kids!  Happy Birthday to me! 

A Single step....updated

:::::I have been writing this update for 4 days.  With the constant run of upper respiratory infections I've been  apparently entertaining (since it's either the same one that won't leave, or a carousel of it's friends- yes, I personify almost everything) in my too-small-to-entertain-head and work time fighting with my holiday-celebrating-family time it's been nearly impossible to get this blog out.  It's not for a lack of trying though, and so I persevere::::::

I. am. amazed.

My appointment came & went on December 21st.  I was thankfully so busy that day, I didn't feel nervous like I thought I would.  I had just come from Daughter-9's Class Holiday Party after semi-sneaking away from an incredibly busy day at work; filling out the new-patient medical forms was being juggled with working from my blackberry. I proactively took copious notes the night before of everything I wanted to go over with the Dr. so all I had to do was go through the motions of the day (and fill out those damn forms).  For once my anti-anxiety techniques paid off!

The fairly new medical office was nice, clean and comfortably decorated (meaning, it wasn't dusty or cluttered and didn't have that feeling of being decorated my Grandma).  The staff was all very nice & they really put me at ease; already a huge difference from my previous experiences.  Once in my room, I spoke with the intake nurse at length as to why I was there.  She was very interested in knowing what EDS was and after I explained what it is and how it effects me (in small detail), she was shocked at how much pain I must be in (I was shocked that she had really listened to what I was saying and correctly realized how painful it is).  I told her that I am, but that I am not looking for pain meds (I'm always afraid of being perceived as a med-seeker), I'm looking for a Dr. who is willing to help me become healthy.  Her facial expression was open, soft & kind- was she understanding me? wow.

  After a few moments (enough time to respond to 3 more work emails-> next year, nobody takes a holiday vacation but ME!), the Dr. came in.  We introduced ourselves & shook hands.  She looks to be around my age; very warm and polite. She sat at her desk in front of her computer, and I sat at the chair facing her; I explained again why I was there, and what I am looking for.  She was familiar with the term Ehlers-Danlos Syndrome, but new very little about it.  I told her what I know - which is a lot.  When she asked specifically how I am effected, I pulled out my list of what I deal with daily.  Usually, when the list comes out is when whatever Dr. is before me starts noticing the time.  In this case however,  asked follow up questions with each item, wrote notes & looked them up on her computer. WOW! After I was done with my list, I felt like a deflated balloon- I guess I had never had the opportunity to go through the whole thing, and at the end I realized that it is REALLY overwhelming!  The Dr. was finishing up her notes and then asked what on my list was most worrying me, as far as starting with getting things checked out.  Wha? We both agreed that I am a few years late on my next cardiology work up (my heart & I have a dark sordid past stemming from a huge fight we had when I was 10 days old and it tried to walk out on me), and I obviously need to see the GI Specialist.  She also feels that a Rheumatologist would best fit the rest of my EDS needs as far as knowing what other specialists & treatments I may need.  I am going to see this Dr. every month until all of my specialists are lined up and my care is in place.  I already have an appt. to see the GI specialist on January 6.  I can't believe how well this appointment went!  I can only pray that the specialists she's referring me to take me as seriously as she did.  

*whew! done!*

a single step

Tomorrow is the day I consult with the new General Practice Dr.  I'm not as nervous as I thought I would be, but I'm not exactly hopeful either.  The way healthcare is set up here, all practices are connected; if you see one Dr., all Dr's can look you up in the network; I can see this being an advantage if you're currently being treated by a Dr. you trust.  I, however, am not.  My only experience with seeing a GP in this area was with a Dr. of Osteopathy (D.O.) who happened to have met & my daughter after her last GI surgery; she was in her wheelchair and hooked up to her feeding pump on a 24 hour continuous feed (she has a permanent g-tube), she'd also been in & out of the hospital for several weeks and I was naturally, exhausted- the D.O. perceived that I must be depressed- and nothing could change her mind....not very D.O. of her.  The next time I saw her was when my own GI problems started- she wanted me to take anti-depressents.  I asked her how that would help me with my symptoms and she told me that I was probably "just overwhelmed".  I explained that I know the difference between overwhelmed & feeling ill; I have been my daughter's only care provider since her birth and I am quite adept at not only caring for all of her needs, but also being her advocate and the educator for her medical care team.  It was the 3rd time I had seen this Dr. and it was 2 years after I was diagnosed with EDS, so I asked her if she had researched Ehlers-Danlos Syndrome yet....silence.  *sigh*So, I am off to see this Dr. tomorrow how will have more than likely seen notes about me from the previous "D.O.", may more may not have a pre-concieved idea of me, and there is nothing I can do about that.  I can, however, determine how I will present myself tomorrow.  I plan to simply to introduce myself and explain my history & my diagnosis. I will explain that I am mostly self-educated on my syndrome, and it effects me pretty severely according to my Geneticist <name drop here>. I will then ask if she has ever heard of Ehlers-Danlos Syndrome and whether she has or hasn't,if she is willing to research it and help me to build a medical team.  If she is not willing, I will ask if she will refer me to someone who she thinks might be.  If she is willing, I will ask her for the next step.

Early Christmas Gift

I got an early Christmas present yesterday; and it's a biggie.  I've been praying for it, but not actually expecting it, because it was a long shot.....AND I GOT IT!!!
Let me back up: I work for a fantastic company; I really believe in what it does and the approach that it takes to do it.  I also believe that it is one of the, if not THE last American company who takes care of it's employees who work hard to be taken care of.  We get free turkey's and a bottle of wine at Thanksgiving, there is an elegant annual Banquet in the Winter, we get good health & retirement benefits as well as a 3% annual salary increase for those who prove their worth (which is considered "average" for a salary increase in the US).  My history with the company is that I started out as a receptionist & and I am now a supervisor under the Facilities Director at the corporate office.  While my hiring salary was a raise from my receptionist salary, it was still extremely low because of my lack of experience (having been a stay at home mom for 10 years before that).  I work my arse off, because I feel like that's what one should do when employed, it's a work ethic I was raised with and I'm raising my kids the same.  I'm up for review and my Director is beyond pleased with my performance, so pleased that he recommend at 10% salary increase (unheard of) based on the amount of work I am excelling at & the salary I am currently getting (because they assumed I would be able to hack it as I have?). NOBODY gets more than a 3% salary increase and I don't mind saying that I deserve 10%. 

I GOT IT!  

This means, that when this goes into effect, we (my family) will have a working budget for the first time since The Husband lost his job in June 2010 (well we ran out of money in October 2010).  We will be able to pay all of our bills (which we HAVE been paying in full & on time by cutting everything we possibly can else out- groceries, I've gone without countless meals so the kids can eat, etc.) while feeding the children AND ourselves at the same time! We can fill the car with gas when it runs out and turn the heat on (not excessively mind you, lol).  We can't save anything yet, and I still can't buy any clothes that fit (though maybe being able to buy more of the food I am able to eat, I'll gain some weight back), but I don't care because we've finally made it to the next stepping stone....after so much hard work. 
The next stepping stone is for the Husband to get a full teaching contract, which probably won't happen until next Fall.  Until then, I am satisfied that my hard work is finally paying off.  

So to celebrate, here are some Christmas songs that make me smile :)

I love these guys!

This is my most favorite Christmas song

accomplished!

It turns out my icky-not-feeling-good feeling was the beginning of a bug; I still feel like poo...and the structure, or lack of in this blog post will probably show it.

You ever put something off for no good reason except you just REALLY DIDN'T WANNA DO it?
This elusive something that is not especially difficult physically or even mentally, but for some reason the thought of doing it STRESSES you out so much that you have already decided you're not going to do it today before the thought has finished materializing in your mind?  
I've noticed when I am extraordinarily stressed-out (like being sick on top of having a chronic illness & pain, while still having to work as if you're not & make tasty preparations for the holiday's festivities for all of the kid's functions & help them get over the triumph/loss over a pair of our favorite furry foster pets getting adopted), the smallest, silliest & easiest things feel like a HUGE mountain standing before me, blocking out everything pleasant in my view.  There are 2 different tasks that I've been putting because of these very reasons, and for some reason, it took getting sick (just another added stressor) for me to finally say f@%$-it and just get it done:
#1 Mailing in my insurance claim forms for a car accident I was in last August which caused horrendously painful whiplash (not sure if it's anymore painful from anyone else's whiplash- but having never had a problem with pain in my neck/back- I've been appalled by how painful it is) car damage and BILLS for which I should be reimbursed since I was rear-ended by an person talking on their mobile and not noticing the cute little Volkswagen in front of her.  I hope her insurance company doesn't give me any trouble, I just want to be paid back what I had  to pay.
#2 Is to just throw a dart and make an appointment with a new GP- ANY GP just to get my search going again.  This is certainly the most daunting to nearly everything on my to-do list, but it's also one of the more crucial tasks that I accomplish; I've been putting off for a year.  That's right, 1 year.   That is just how bad all of the previous Dr.' s I've tried have been- I hate it.  It's just too easy to find something else important to do instead of this; like making sure my kids are up to day on all of their appointments, etc.  My husband said something to me on our anniversary that changed my mind, something unexpected because we've had such a rough go of live for the last 18 months (since he lost his job & was forced to leave home, where I had been for 10 years and into the work force as the family bread winner) and also in our marriage; it turns out, he's terrified of my death.  I had no idea (I know that sounds silly), I really didn't have a clue.  I really only express about 20% of what EDS does to me to the people closest to me in life because I don't want to overwhelm or over burden them, apparently that hasn't worked on my husband.  Suddenly, because it's for him, finding a Dr. to make an appointment with didn't seem so hard.  Let's see how I feel next week when it's time to actually GO to my first consult.  Ugh.  I love my husband.


So I did both.  My anxiety over next week's new Dr. appt. is at an okay level right now, but that will probably change...I hate everything about being in a Dr's office/hospital- the needle sticks are the easy part for me; I hate having to explain my EDS to someone who may or may not care- it sucks ass.


I really hope this bug doesn't fully get me down, I feel pretty wretched, but with my Office holiday party on Friday, kid's holiday concerts everywhere I see, and our Furry Foster Pooches being adopted tomorrow and EDS's every-day antics, I just don't have the time or the energy.  Fa-la-la-la *cough* la-la-la *wheeze*

As this is my place where I can say what I think I can't say in the real world...

 

I...don't...feel...well...!

I'm frustrated & annoyed this morning.  I really just don't feel well....since yesterday afternoon.   It's completely stupid because it feels like it could be/probably is something as simple as a bad case of indigestion; yet I've hardly eaten a thing...and I've certainly not eaten anything that would normally cause this distress for 20+ hours...ugh.  I hate this....

::::back to trying to have a good attitude::::

I am up on this cold, cold morning...thankful that I am able to lay in my warm bed a while instead of getting up for work....ah...first gift of the day...

Adding more clothes on top of my pajamas

:::pop::::slip:::YOUCH!:::meh:::

I trudge out to the kitchen for a cup of hot coffee, already made by Husband & waiting for me in the pot.....sweet gift.
The kids are all up & quietly going about their activities.....so nice now that they are older.... :)

 ::::creak:::::ache::::POP!:::ooh-need to be careful of that joint this morning::::gasp::::eek....chair...ahhhhhh

So here I sit.
I'm thinking a bowl of hot, freshly made oatmeal w/ honey & walnuts is in order...however this busy week has resulted in a kitchen filled with dirty dishes; no clean pot, nor even space on the stove.  Aching hips have decided that coffee will suffice for now.


Perhaps a bit more sharing time is in order this morning: 

<3 I have a family <3

 My husband and I celebrated our 12th Anniversary last weekend by taking everyone to see Arthur Christmas- it was a great movie (said by someone who is a pretty staunch critic of kid-movies).  It was nice to do something fun & silly with the kids as a celebration of our 12th & most difficult year of marriage so far.  Together, we have been blessed to have had 4 children; 2 girls & 2 boys. They all have EDS too in various degrees; 
M-11, our first daughter, has classical hyper-mobility & no other symptoms; she is "gifted", artistic, insightful & loving- and could, I bias-ly believe, find a cure for EDS if she wasn't so terrified at the sight of blood, sickness or hospitals (because of how often she's been forced to watch her siblings go through terrible hospital stays)- so she will just make some other amazing mark on the world.  She carries the burden of being "the healthy child" and yearns for a friend with the same lot in life.
Baby-J, our first son came next.  He died a few days prior to his birth from spontaneous vascular rupture= we now know as EDS; so I don't yet know his personality, but I miss him terribly.  We were told his death was a fluke & so his vascular rupture was ruled "idiopathic" (they don't know what happened).  
A-9, our second daughter, is a bit more complex; she was born prematurely and has mild cerebral palsy as a result- which seems to exasperate the effects of EDS and vice verse.  She has been in & out of the hospital her entire life and has endured many surgeries, complications and has many attachments.  She is also very smart (honor roll), however her intellectual intelligence over powers her emotional intelligence- which makes social environments complicated.  She is a spitfire- so watch out for that one.
C-7, our second son, came last.  He was born right at the margin of premature/full term which was a blessing (since he came so quickly, I was still in my car- funniest story ever, I'll have to remember to tell that one).  He was completely healthy until he was 15 months old and has been hospitalized for a mysterious illnesses since then, though no surgeries other than the normal childhood tonsillectomy.  His biggest illness was when he was 5; he nearly died before my eyes of ITP, or Idiopathic (God, how I hate that word) Thrombocytopenic Purpura = his own immune system was killing off all of his platelets.  Since then, he is still sickly, small and seems to suffer from chronic fatigue.  There are no studies relating Immune Deficiency to EDS, but since the spleen is made out of a different type, but still connective tissue, it would be hard to convince me otherwise.  He is a sensitive soul, a thinker, loves puzzles & building things, hates hate and sadness & is burdened when he see's or hears of it going on in the world.
With all that we have on our plate, it won't surprise you to know that I was a stay at home Mom for 10 blissful years & 4 months; they were blissful, but not boring.  Husband lost his job in June 2010, I started back to work that Sept. and life has been alien since.
Dealing with my EDS as a working mother is almost an oxymoron at this point.  I have no choice but to do what I can do.


So that, is as they say, that.

Me & Husband the day before our 12th Anniversary; we are nerdly love

A-9 resting with our current Furry Foster Friends (we foster dogs for a local dog rescue)

Husband helping C-7 place the Christmas star

C-7 & M-11 last weekend at the Christmas Parade

My Hearts & me; layered up and ready for a parade.

Christmas is here;  I love; L-O-V-E Christmas!
It doesn't feel all the way here yet though....it's getting there.
 I baked cookies to try to get into the mood- it helped- my loved ones & co-workers were happy to gobble them up- which makes me smile :)

I made a story line with the gingerbread men, who were slowly realizing that they were also just a statistic of all the other gingerbread men.  They also weren't too sure about the snowmen, and were pretty sure they were all wearing the same disguise.....hey- I can't actually eat any of these cookies- my entertainment must come from SOMEWHERE!

BTW- I kept getting amazing compliments on the cookies and how did I find the time to make them from scratch, etc.- these are pillsbury sugar & gingerbread cookies; decorated while sitting on my arm chair- and I was STILL utterly exhuasted when I was done! Perhaps everyone was just being nice (it was nice), but if they could have seen me in my arm chair with heating pads all over my joints- LOL!

Finding Thanks.

I had a lovely Thanksgiving; filled with family, friends & conversation- not so much food, but I don't care about that anymore. I am incredibly thankful that there was no mention of what was or was not on my plate- I worried about it needlessly the entire morning.  I thoroughly enjoyed the evening and it seems that feeling is mutual by all involved.  I am so blessed to have each individual that was around that table- and so thankful.


My best good friend & her family came up to visit for the holiday, and it was so wonderful to see her again, I was looking forward to it for weeks.  Having survived similar strange & tumultuous childhoods, we are very much sister-friends/war-buddies, cut from the same idiosyncratically knitted cloth.  At the same time though, it was difficult to be with her.  She see's through me; straight through everything that I put between myself & the world in order to be strong enough to get through my daily life- the life that I have no choice to be strong & just live despite the effects of EDS.  Before even a minute goes by, she's concerned & wants to know how I'm doing and what I'm doing to make myself better.  I work very hard to live under my own terms (I'm terrified of taking prescription pain meds and so I don't yet), and in doing that, I work very hard to be strong- stronger than I physically can be, which of course makes me that much weaker when my fortress falls down.  She is of the few people who's simple question of  "how are you really?" becomes my kyptonite.   I bubble over uncontrollably just as slightest tear threatens to warm the back of my eye.  My poor friend.  Just like everyone else in my life it's impossible for her to understand, yet she looks at me & knows I'm not ok, and she's completely helpless to do a damn thing about it and that pisses her off.  She & her family left this morning for their long trek home.  She texted me that she felt sick thinking that she had offended me, even angered me during our last conversation.  I wasn't offended or mad, just sad at our lack of connection over this THING that has taken over so much of my life since we'd last seen each other.  EDS has come between us, and she has not had a chance come to terms that if she understood, she'd have it too, and so she just can't.  We will get there, but in the mean time, I'm feeling very alone.  I did a lot more than I should have yesterday and so my resulting extra exhaustion & pain is working against me coping with this great big lonely cloud above my head. 


So today I will rest & allow myself to feel the way I do & I will pray for a better, stronger tomorrow.

Inside Thoughts: an evolution

Being the neophyte blogger that I am, I am still exploring & getting to know myself as a putting-myself-out-there-blogger (not something I do very comfortably in my outside life).  I'm noticing now, that this breath-of-fresh-air outlet of mine is taking on a personality of it's own; instead of me telling this blog what I want it to be, my inside thoughts & this blog are evolving into something I don't yet know.  I had originally intended for this blog to be about me & Ehlers Danlos Syndrome; however, I don't let EDS rule my life outside, and so it seems unnatural for it to be the rule of my blog.  EDS is apart of me, and I am apart of it; mathematically, one part of something is just that, and it can't be made whole until all the parts are put together.  My experiences with EDS are important to who I have become; they are part of what have given me a view of life that I feel many people don't have.  If I am truly honest, while I wish my body would just let me LIVE my days without so much struggle, I am thankful for this life-perspective. It's a tangible carpe diem that screams daily into most of my subluxating & dislocating joints, my unpredictable heart rate, body temperature & struggling body.  It is this that helps keep me from disappearing in fear, but instead standing firmly to hold a hand who's most precious loved one is dying, feeling as honored to be there with them as it is to be holding another's hand as they give birth.  It is this perspective that makes me want to experience every moment in between, the good & the bad to it's fullest so that when my time comes I can confidently kiss the world good-bye knowing that I have been good n' loved by those in my life and that they have been good n' loved by me.  
Thus the blog's name change; it fits better to what this blog has become, or perhaps was since my first post.  I am not writing to gain readers, though seeing that it is being read certainly makes me smile :) , I'm writing it for the exact reason above- to let my inside thoughts play.  My inside thoughts use commas too often & they love run-on-hyphenated-sentences.  My inside thoughts love word pictures, silly/punny jokes, and they are not consistently eloquent- if ever.  They are just mine, and they are here.  :)

And now for something COMPLETELY different....

  There are many a Friday that come along that make sigh blissfully that I made it through the week; then there are Friday's that make want to shout from my roof top:

"THANK YOU GOD! I'M SO GLAD THAT FRIDAY IS FINALLY HERE!!!! I DIDN'T THINK THIS DAY WOULD EVER COME! FRIDAY, DON'T EVER LEAVE ME AGAIN!".   

Today is that kind of Friday.  Extraordinarily busy work schedule (which is saying something since my schedule is always incredibly busy) coupled with migraine-inducing issues among employees (that I believe I have finally solved just short of terminating someone- I'm so glad I did not have to do that) & increased EDS pain has made this week suck (though, it of course, could have been worse & I am incredibly thankful that it was not). 


With that said, I bring you a list of things that make me smile, just for the fact that they exist on YouTube (I'd post pictures of things that make me personally smile in my life, but for some reason blogger won't let me right now):

The Muppets (counting down to the new movie!) & Tributes to Queen!

Coffee & Stop Motion Animation (so almost called myself Gumby-Girl)

Friends & Feeling better (I almost always pop in a Friends DVD when I'm lying in bed and wrapped up heating pads trying to make my EDS pain go away) 

:)

HAPPY FRIDAY 

&

11-11-11!!!!!!

speaking of....

Dear Dad,
  The most effective way to show me that you don't care and you don't listen to me is to begin this afternoon's interaction as you did:


Me: " Hi Dad!  It's good to see you!"
Dad: "Geez looking thin."
Me: (hiding my disdain) "Yes, I know, I'm trying to eat what I can."
Dad: "C'mon, are you doing this on purpose?"
Me:....


:(

Food & Me

 I have recently had the pleasure of meeting several EDSer's in a Facebook Group.  I'm not much of a group-joiner, but this particular group has the word 'positive' right in the title, so I thought I'd try it out hoping to find some like-minded people who suffer from this syndrome who want to treat it as positively and naturally as possible.


Anyway, I was talking to my new EDS-Friend and he asked me a question that I thought might be a helpful way to explain in more detail how EDS effects me on this blog:


Question 1: What is your biggest challenge of being a Zebra (someone with EDS) right now?


Answer:  My challenges always tie with one another; but for the last year the one that is by far my biggest challenge is Food.  4 years ago, I could eat whatever I wanted.  Now almost everything makes me sick.  The effects aren't always the same; dairy, Mammal (red meat, pork, etc.), fried-anything, or anything especially high in fat (except for avocado and small amounts of peanut butter, strangely enough) make me violently ill- almost immediately and it could last up to a week.  Gluten of most forms, however, give me a bad stomach ache and acid reflux (unpleasant, but not as intolerable as the other foods), but also result (I've noticed through elimination) in even looser joints & increased joint pain for weeks on end (which can be intolerable depending on the state of my pain level before the 'attack').  I've never been able to eat salt, even as a kid- it would make me swell up like a balloon and now in conjunction with the swelling, I get really bad pain in my bones (especially the bones in my face).  I hate explaining these things to a Doctor, I'm always greeted with the same "Wow you're crazy" look.  Nothing like being constantly miserable and seeking medical help then being told that my symptoms don't make any sense and offered depression medication. *sigh*.  To combat this, I stay away from the foods that hate me- which results in some very interesting looks in the cafe at work during lunch time- more on that later.


Here is what I can and do eat daily:

Bolthouse Farms Green Goodness Vegetable & Fruit Juice

    This is my breakfast every morning; I have it in a plastic drink cup with a straw that you can't see through.  I believe Bolthouse Farms calls this "juice", but it's rich consistency definitely makes is a smoothie, in my opinion.  nearof.com has a pretty accurate and funny description of this tasty juice "with a face only a mother could love."  It's got a TON of vitamins and veggie goodness in it, but it's sweetened with kiwi and apples, so if you can get past the sight and consistency of it; it's pretty sweet & tasty (close your eyes the first sip though).  This is what I'm drinking in the car on my way to work every morning.

After my green drink, I reward myself with some coffee, sweetened with  vanilla almond milk- the vanilla gives it the perfect amount of tasty sweetness.  After my coffee, I generally drink water for the rest of the day.  I might also have a banana later in the morning if I get hungry

For Lunch: Caramel sweetened brown rice cake with a bit of peanut butter

and an orange- helps with with the dry-ness of rice cakes & peanut butter.

Dinner is, again, limited.  For meat, I can have season & baked fish or poultry breast or egg whites. I'll almost always eat this with brown rice and steamed vegetable in various different ways (mixed together with ginger, or separately with other seasonings).  I can stray from this with some ground up turkey breast; my favorites are Stuffed cabbage-Italian seasoned (I season everything myself so no salt) turkey breast and home-made tomato sauce, and Ground turkey taco bowls (again, seasoned myself with cumin, garlic, onion & chili powder); mixed with onion, tomato, fresh salsa & avocado- it's Taco Tuesday at my house EVER Tuesday :)

As you can see, I am not the most exciting person to go out to eat with.  I am, however, pretty cool to have as a dinner host though;  I love to cook (LOVE it!) and will cook amazing treats and cuisines even though I can't eat them myself anymore. 

This silly tummy of mine gives me more of a challenge than just trying to find a way to nourish myself though.  I get a lot of comments made to me when I have to eat in public.  I eat in the cafe at work, that is not negotiable, I won't hide in my office to eat because a) I need to get out of there and b) my cafe has a big flat screen t.v. that always has CNN on  and that is the only time I can catch up on what is going on in the world around me.  That being said, I am almost always bombarded by comments like "No wonder you're so thin!"  and "Are you some kind of health nut?!", and something else related to my being from California.  This is often followed by comments about my weight that make me wonder at how it's ok to comment on a thin person's weight, but not an over weight person's.  I think the self conscious, oh-my-gosh-is-everyone-noticing-me-and-what-I-eat-now-I-want-to-pull-myself-into-a-hole feeling must be the same as if they were calling me fat.  Why?  Because I am not trying to be thin, I'm just trying to find food that will make me not sick, and enough of it to make me not die!  I don't want to talk about my diet because it's really not that healthy of one; I'm losing my hair, I have weirdly bendy nails that peel & look more like roof shingles that even nail polish won't hide. I also go through great pains in order to keep the gastrointestinal Armageddon that would occur if I were to eat the normal foods that they all take for granted a secret, and I DON'T want to tell them about it!
Wow...I think I needed to get that out.  I feel a bit better now :)

Blessed Adventure

 An opportunity arose.

  I went.

 

 I ended up lost.

 It was beautiful.

Thankfully (this time), I found my way home before ending up in another state. :)

Sad Day

  I went to a funeral today.  It was not Melanie's funeral, though her service was today as well (she lived on the West Coast- I'm a transplant now living on the East Coast).  Today's funeral was for 7 month old Graham; the son of a co-worker.  Graham was an incredible baby boy; born at 24 weeks gestation weighing only 580 grams, he fought for months a previously unsurvivable infection and won!  Graham did very well for a while after that, but then his little body got too weak and too tired.  His parents did an amazing job loving & advocating for him and this is all a very very sad thing.  I have been to more children's funerals than I wish to remember, and I will never get used to them.  So today is an understandably sad day.  I am sad for Graham's family and the HUGE loss they are feeling, I am sad for all of the feelings of loss Graham's death brings up in me, and I am sad because Melanie has died and I can't talk to her about it all.  It's a sad day.

So Long, Dear Friend

  This is Melanie, she is my friend.  I've known Melanie since I was a kid, which is rare for me since I moved a lot.  In school, we were more friends than acquaintances, but more acquaintances than friends and it wasn't until we were adults that we truly knew each other. 
  Melanie always stuck out; she was a big ball of positive energy all wrapped up in a teeny tiny body.  If she ever made it to 5ft tall I"ll never know because she never seemed all that small to me- and I've been 5'8" since I was in 7th grade!  I remember one day when we were really young (6th grade- maybe?) hanging out at her house and her telling me in her positively matter-of-fact way, that she had leukemia as a baby and that the medicine that saved her just happened to make her small.  I took the information as she gave it to me, and never thought about the magnitude of what it meant until later; as far as I was concerned she had leukemia as a baby and then she didn't- awesome!  As it turned out, at 25 Melanie was to battle breast cancer and win.  A few years later she had a scare with bone cancer, and then last year they found spots on her liver- I think I still have her text on my phone telling me.  Through her illnesses, she went to school and graduated with her Master's Degree to become a Child Life Therapist (one of my favorite kind of therapists!) so that she could help children who are going through what she had and was going through.  She was involved in patient advocacy & support, she participated and even taught Laughter Yoga.  She inspired everyone she met.  She was strong- so strong that she sometimes allowed herself time to let her fight get her down; lick her wounds, regain her energy and get back up again, even stronger.  These were our conversations that inspired me the most; you're only as strong as you you can be, and sometimes you have to rest and let those you trust carry you while you're weak.  I am so thankful & honored & blessed that she trusted me with that.  Melanie fought hard, and I believe she gave cancer a pretty good ass-kicking before peacefully dying last Saturday, October 15th (I'm told with a slight smile on her face.) 
  I have dealt with death before, the tsunamic waves of grief aren't new to me.  What is new to me is this feeling that the world has truly lost a light, and now there is a void in her place.  I am usually able to be relieved for someone who's fight with disease is over; I can be thankful for knowing them and that they are at peace- and I feel guilty because, while I feel that way for her most of the time, sometimes I'd rather have her here. There is now a Melanie-sized hole in my life; I keep almost texting her, our last Words With Friends game is still up on my phone; I'm craving a chat- some Melanie time :).  She is free though, I truly believe that & and I am so so happy for her.  I am also so so thankful for having known her, so grateful to have experienced her friendship; I hope that I always carry the lessons she taught me and pay them forward.

So long Dear Friend, until we meet again...thank you for being you.

A conversation...to myself

So here it is; the work in progress that is my blog.   I struggled with the idea of having my own blog; realistically, this is just a one-way conversation to myself.  Do I need that?  Aren't I already having those in my head more often then I should admit to the world?  On the other hand, the internet has way more conversation-follow-up information than my brain does, so why not? PLUS, someone looking for information or even just a person to relate to may stumble upon my words...or so my thought process goes...


 In the end, I clearly decided to go ahead and start a blog, if only for the intention of having the opportunity to say things that I don't feel comfortable, or feel able to let go of in front of actual people.  I'm naturally a pretty positive, look-on-the-bright-side kind of person.  Not annoyingly (if I do say so myself- and hey this is a one-sided conversation to me so I can!), mind you, but when I talk about things that suck- it's usually in a way that end up making the listener laugh.  I've always been that way, I hopefully always will be. Over the course of my life- a lot has sucked, and as strange as it sounds, I feel like I have to make other people feel better when they talk to me about it.  Wow....that's f-ed up!  This blog could totally end up saving me a ton in therapy!  Or, it could possibly make me crazy enough to stop speaking to real, live people all together only to save my true thoughts for this one-sided conversation to myself.  Eh...time will tell..


Anyway, back to my point: I have Ehlers Danlos Syndrome (EDS).  There is a brief description of what those words mean to the right of the screen, but the truth is EDS effects people differently; so anytime I talk about it, I'm only representing what I personally experience with this syndrome.  For me, EDS effects my major joints; my hips (the right more so then the left) slip in and out of their socket countless times during the day, same with my shoulders & knees.  My ankles & wrists slide around when moving them as does the parts of my spine that connect with my hips, and way up where it connects with my head (ever feel your head slide around on top of your spine?  It's weird even for weird).  I pop & click throughout my days and pray that nobody thinks I just had some kind of weird gastric experience.  I get injured really easily (subluxations, dislocations, slips, and for some reason broken fingers & toes are my norm), bruise & scar easily.  I have Mitral Valve Prolapse (MVP) as well as POTS which makes me pass out, overheat, have crazy heart pounding craziness etc. pretty easily.  I suspect I have dysautonomia as many EDSers do, but I've not been officially diagnosed with that.  EDS also greatly effects my entire GI system.  Over the past 3 years, I have developed a complete intolerance for gluten, dairy, mammal & it's byproducts and most fats- which is really frustrating for someone who LOVES to cook (and is really good at it- see, I didn't even apologize for gloating that time since I know I'm just talking to me :) ) & eat what I cook.   I miss food terribly, but the aftermath of eating those now forbidden treats just isn't worth the days & sometimes weeks of horrible pain and not so appetizing events that follow.
  I was diagnosed by a geneticist 4 years ago by a pretty prominent Geneticist for our area; she's been featured on those Mystery Diagnosis shows and I feel pretty lucky to have been seen by her, especially since she specializes in Pediatrics.  I've not yet been typed (there are 7 different types of EDS the last I checked, though that number seems to fluctuate between 7 & 9 depending on who you ask), and I seem to have forced several Dr's to scratch their heads because my symptoms tend to go across several different types from Classical to Vascular- which apparently isn't allowed with EDS... who knew I could break so many rules! :)


Aside from just talking to myself, another of my goals in writing this blog, is to chronicle my journey to treat my symptoms as naturally as possible and find a Doctor who shares that same goal for me.  I do not have a general practitioner; I have been searching for one since getting diagnosed, though my Dad will tell you that I'm not looking hard enough since I've not actually gone to a new Dr. in over a year.  I got fed up seeing new Dr.s who would tell me the same thing "You have EDS, here are some pain pills and anti-depressants".  I am not totally opposed to using drugs, I would just like the opportunity to try something healthier for my body before resorting to them.  So far, I am self-treating my EDS; I am constantly searching for foods that I can tolerate that will actually FEED my body what it needs with as little preservatives, chemicals & hormones as possible,  I am trying to counter my weak & stretchy ligaments by keeping my muscles strong through modified YOGA & swimming- I would like to add biking to that regiment, but I need my bike fixed and can't afford that right now. :/   I really want to find a Dr. who will help me, and hopefully this blog will help me hold myself accountable to that search.


So there it is, my first post.  Hey, look at me, I'm a BLOGGER!!!