Quitting wrinkles the soul

You hear these sayings all the time:

"It's always too soon to quit." ~ Norma Vincent Peale

"Age wrinkles the body, quitting wrinkles the soul." ~ Douglas MacArthur

and of course

Last week, my GI Dr. gave up on me.  I've had a rough few weeks; as of today it's been 14 days since I've been able to keep down any solids, and have been living off of about 16oz. of coconut water, and a vegetable or fruit smoothie- if they stay down.  I've lost more than 10 lb during this time, and each trip to the ER (once by ambulance because I passed out) has ruled out gallbladder, liver and any EDS-related vascular scares and ends with the same "Here's some zofran, try to eat and see your GI".  So I did.  What did he say?  He said that it could possibly be gastroparesis...we'll check that, but beyond that, this seems to be what EDS does, and there is no cure.  This translated to me as "I can't help you, I won't figure out how I can help you, or look for someone who CAN help you; just go home and die."  He is obviously fired.

Since then, I have seen my GP, who is worried, but doesn't know what to do- this was 7 days ago.  Since then, I've gotten weaker and weaker; sicker and sicker.  I feel hungry, starving actually, and as soon as I try to drink (have left solids off the menu for now), I am plagued by nausea & vomiting (and I sometimes cannot stop), and if I don't vomit, I have horrible intestinal shooting pains, and it literally feels like they are jumping around in my abdomen!  Yesterday, I called my GP to ask if I could take the zofran more frequently, I'm already on the maximum does every 8 hours, the nurse (my Dr. is out for the holiday until Monday) said I could take it every 6 hours and that there isn't anything she can do until next week.  She is going to try and get me in on Monday.  Since then, I have gone to homeopathy to try and get some nutrients in my body to help me fight.  I have a very large clock ticking away in my head for 2 reasons; reason #2 is that my body obviously cannot continue this way for very much longer, but reason #1 is this:

Make-A-Wish is granting my miracle warrior a wish, and we leave in  10 days!

The above smiling beauty is my Miracle-Warrior smiling with all the excitement she can muster, because she has been granted the wish of her dreams to visit Disney World thanks to the Make A Wish Foundation.  Not only that, that, the Make A Wish Foundation is granting MY wish of creating these wonderfully special memories with my family- my hearts- the reason I will never never never never give up.

Arms wide open

The past 2 years and some months have been full of outward and inward transition; it seems that just as one transition begins to close, another opens right on top of it.  Outwardly, I have gone from a stay at home mother as I had been for 10 1/2 years to a part-time working and then full time+ working Mom.  My elementary school-aged children have grown to the "upper grades" &  Jr. High School.  My full-time Special-Education Teaching husband was confident in all that he was became an unemployed, depressed and angry man who had lost all faith in the career path he had chosen and worked hard to pursue, and again full-time working teacher after 2 years, who still has little faith in this path he is on.  Inwardly, I've gone from physically strong bodied and strong minded, to physically weak; having little control over my day to day abilities.  While still yet very strong minded, I am learning so much about myself, and this life we all share.  At the beginning of this life changing phase of transition, I hated it.  I hated leaving my children to another's care, losing so much control.  I hated having a husband who seemed as though he never truly saw me for who I was, but what I was- never understood that I could do more than raise babies.  I hated how angry he could be and is.  I hated this break down of physical body, and that this is likely what my children will face, and most of all I hated that I couldn't bare this all for them.  After a while, all of that frustration and sadness left me tired, empty, hollow and useless....the opposite of who I want to be.

Today, the transitions continue, but instead of wrapping my arms tightly around my body with my head buried in the center; my arms are wide open, taking each change inward to examine and learn from; to choose to embrace or step away.  Accept and love, or love and let go.  I feel that what I've walked through the last couple of months since I last wrote you, Dear Blog, has helped me to get here- and I am so thankful.

My trip to California, in June was a big deal for 2 reasons;  #1 the point of the trip was to surprise my beloved Grandmother for her 80th birthday.  She had 75 people who love her fly from all over the country to sing Happy Birthday to her:

My Grandma is a wonderful example of love; she has loved me regardless of my choices in life not being what she wanted for me, she has loved me when it seemed like nobody else could or would.  She is full of life and laughter and I would be lucky to be half of what she is ever, let alone at 80 years old. <3

The #2 importance of this trip was that it was sort of a "coming out" opportunity for those who haven't seen me in a few years.  Though I've been diagnosed since 2007, I was not open to discussing my own struggle with EDS until the last year or so largely because it is so physically evident in me now- many of those I love in CA had no idea of what has been happening with my physically and I knew people would probably notice.  I was in a good place and ready for this; it was time.  Telling those that I love, helped me to let go of the burdens that had been leaving me so empty.  Perhaps, without realizing it, the frustrating and anger and fatigue I was carrying around wasn't just a reaction to what was happening under my roof with my job & husband, but perhaps it was carrying this burden of life & pain & death by myself and not trusting those who love me with it.  It was so joyful to see them; my village- I am so blessed!   We hugged & laughed and talked well into the night, and had coffee and shopped thrift stores and visited my beloved Pacific Ocean and we hugged each other good-bye with complete love & peace.

FLARE

I haven't talked much about flares.  I've always just explained what I would consider baseline life; the pain that is "usual"..."average".  Being that I am still able to remember what life was like when I had more pain-free moments than pain-full, I can equate my baseline over the last year to be like the ache & pain a typical person might get during their worst flu; It's always there, some movements or moments bring on a larger, gripping pain- a crescendo- screaming a piercing vibrato that ebbs and flows through out the day, with that same nagging flu pain keeping a constant tempo in the background throughout the body.  That's life, I can manage it with diet, rest, exercise, etc and internal strength.   A flare, however, is like fire and brimstone within every joint and connection of muscle & tendon onto bone.  It's sears deep into my sinews where no hand can massage and radiates there, migrating every which way.  A lot of things can bring on a flare; gluten, dairy, high fat anything, stressed, too much activity, too little activity, heat, cold and of course, nothing.  This current flare looks to be brought to me by most of the above, namely stress, too much activity, extreme heat and stress (I could say it again, but you get what I mean) and it's all been going on for several weeks, which is probably why it's the worst I can remember feeling.  I feel like it's concentrated in my  every capillary, tendon & marrow and is trying to swell & combust to oblivion.
I hate this feeling- that this pain, this defect running in my every cell, is bigger than me; because my spirit feels so much bigger than this- yet I can't get on top of it.  I keep remembering that this probably won't last forever, and even if it does, than I have other medical options at my disposal that I've been saving for this...I just don't want it to be time yet.  I need more time to be able.
I have a lot going on, a lot I want to share, but first, I am determined to share my trip to California; it was magic & solace & love.  I hope to be back blogging later this week to share.
Until then...I'm trying to break through this.  I have work to do, and I have kids who are looking at me; my body- their future- who I have to show can make it through this too.  If only I could do it for them...

Dragonfly Day

Today is Dragonfly Day; actually the kids call it Joshua day.  Joshua was our second child, our first son. Dragonflies have always reminded me of Joshua because they are big, they are beautiful and they are silent, just like he was the day he was born 11 years ago.  Joshua died just days before he was born due to complications of Ehlers Danlos Syndrome.
I had so many questions after we lost our son. I was an empty-armed mother filled to the brim with grief & heartache.  One day, I was having a rather loud & irreverent internal conversation with God as I looked at the one picture I have of Joshua, when my nephews came tearing into my home. I quickly threw the picture into my Bible for protection from my nephews who have autism. I later hunted through the Bible trying to find where the picture had landed and was completely shocked at where it lay:

"Have I not commanded you?  Be strong and of good courage; do not be afraid, nor be dismayed, for teh LORD your God is with you wherever you go." Joshua 1:9

I am one who has grown to believe that God loves each of us & hates none of us.  I have no proof of God's existence nor can I prove His in-existence.  I my own studies that I will discuss when invited to and my life with the circumstances within that have helped me understand that God loves me through my heart aches, through my body aches & illnesses, and that there is so much more than this painful life.  I believe His Son, Jesus, was the very first Hippie who died & lived again to love everyone & wants everyone to just allow Him to.


I've not posted a lot because I've been traveling back to California.  Below is a video of sometime I spent near Joshua's resting place, it was a sweet & pleasant time to remember that God is with me wherever I go.

May's EDS Awareness wrap-up

EDS Awareness Month has come & gone, so I thought I'd post the rest of my Face Book Awareness rants up for whoever may be reading.  These rants are few, but they are there.  I can understand someone being disappointed in my Elasti-girl representation of 4 measly (albeit informative & eye-feast-y) posts.  One might think that I would have done everything I could to make the most out of the outlets afforded me by our handy social networks to spread the stretchy word.  If I were judging someone else, and not myself, I would think that someone afflicted with a syndrome that riddles her with a crap-load of different diseases that effects every minute of her very long days would spend a lot more time making sure she came up with at least one colorfully witty and smart-astic EDS tidbit a day during the month the national foundation raising money for research/treatment on such a syndrome was trying to make official across the world.  Fortunately for me, I knew better than to expect such things.  I'm busy & I know it.  The truth is, if I was cute/charismatic/important enough to have been asked which month I would prefer to be Ehlers Danlos Awareness month, I can assure you it would not have been May.  May ties with December in eventfulness on my calendar, so the fact that I did 4 posts at all is pretty darn fantastic, and even though you've probably already finished judging, I reject it completely (rejecting judgement, btw is an awesome weapon to have in your psyche-arsenal, I highly recommend it and wish every girl was taught how to do this at as young an age as possible).  

Aside from Mother's Day, which by the way gets better & better the older these kids of mine get, for which my  preciousness-es got me exactly what I wanted:

A day with them at the beach

 May also happened to be the 8th Anniversary of this, the most hilariously and often inappropriately clever boy's birth in my new car. 

That's right, 8 years ago, this little Dude was born in my car thanks to EDS & two (2!!!)  midnight trains.  Being our 4th baby (and first healthy baby after 2 separate traumatic sick baby births in which only one survived), and seeing immediately that he was healthily fat & screaming, my husband and I could not stop laughing at the situation & everyone freaking out around us (who probably thought we were nuts).  My most favorite birth by far, and we've been laughing together since.

May would bring the 12th Anniversary of our first babe...the one who made me a Mom....just 7 days later.

I know...I'm showing her face...and I'm wearing a towel on my head (getting ready for work)....but she's so cute & lovely all rolled into one smarty-artsy-pants.

Then of course there are the Dr. appointments, end-of-the-school-year violin concerts, school programs and work projects (oh the many work projects...) that simply don't care about whatever else may be going on in May- they just...don't...give-a-damn!

So, without further ado, Ehlers Danlos Syndrome awareness & knowledge commence:

May 30, 2012

Ehlers Danlos Syndrome is personal; it's symptoms are unique to each person who has it. While there are many symptoms that effect most people with EDS (or EDSers, as we tend to call ourselves), the severity of these symptoms vary. There are also many different symptoms that effect some EDSers & not others. So far during this Ehlers Danlos Syndrome Awareness month 2012, I've shared with all of you the general basics of what EDS is, but today I'm getting a bit more personal-which is not really natural to me. Before doing so, it's important to me that you to know that I am a tough cookie. I do not allow EDS to steal my goofy-ness, or joy, nor do I allow it to stop me from doing what I need or want to do; though I sometimes need to postpone things for later, or stop in the midst of activities to rest, or just plain do them differently. EDS is a challenge in my, my children's & my family's lives, and I work hard everyday to show them how to be awesome despite it. That being said- these are some (not all) of the symptoms we experience with EDS:
*Loose joints; they hyper extend, subluxate & dislocate pretty regularly, some daily (mostly my knees, hips, ribs, shoulders and fingers)- causing premature osteoarthritis/Chronic degenerative joint disease. It is because of this extreme joint instability that Daughter-A uses AFO's full-time & a wheelchair part-time.
*Fragile skin that bruises, tears and scar very easily (usually over slight touch or scratch).
*Slow healing of bruises, scratches, incisions, etc. Recovery time for any of these things is usually twice as long as typical patients.
*Muscle fatigue and pain- not tiredness- fatigue (like I feeling like I can't possibly lift my arms or legs because they're suddenly 900 lb.), tendonitis almost always somewhere due to the joint laxity.
*Dysautonomia=  causing me extreme hypotension (low blood pressure), tachycardia (fast & irradic heart beat), gastroparesis (slow or sometimes paralyzed gastric function), heat intolerance (passing out is a regular thing in our house), and other weirdly abnormal things like having an inability to sweat (which is seperate from, but does not help the heat intolerance), being constantly dehydrated, phantom fevers, migraines, Reynaulds Phenomenon, etc.
*Youthful looking face! Yay for that one! :)
*Old looking hands- boo : /
There are more, but this is already long & uncomfortable for me lol. For more information please message me, go to ednf.org, Mayo Clinic.org and wikipedia actually has some pretty good explanations of EDS & a lot of these symptoms individually.

This May I set out to bring a little awareness to this syndrome that has become apart of our normal everyday lives. I've never really openly come out and talked about it in such a personal & public way before, so this has been a little scary for me. I really appreciate all of the love & support I've gotten in doing this- so thank you to those of you loved on me through this month. :) I may have one more post about EDS, but after that I'll be back to my regularly scheduled programming. Please know that I am always open to talking/answering questions. Thanks for reading & caring. I hope that learning this little bit will help others understand a little more about living with chronic illness.

May 31, 2012

picture from: http://chronicle.com/blogs/brainstorm/does-philosophy-just-keep-going-in-circles/46098   

Today is the last day of Ehlers Danlos Syndrome Awareness Month & instead of posting more information on Dysautonomia, I'm going to have to do that later, or ask you to Google it. Instead Husband & I will finish the paperwork we need to bring to the Geneticist tomorrow, where son-C will be formally diagnosed with Ehlers Danlos Syndrome.

So there it is/was.  This was my first time participating in any kind of EDS Awareness "thing", so I'm pretty proud of myself for going onto FB and outing myself with it.  For the record, if I were cute/charismatic/important enough to have been asked my preference of months for EDS Awareness, I'd have chosen June; there is only 1 birthday- that of our son J- who passed away from Ehlers Danlos Syndrome shortly before birth on June 29, 2001. <3

Victory over the Evil Twin & other tidbits

As mentioned here,  I had something removed in late March that I could have only guessed was the remnants of my evil twin that I victoriously squelched while in-utero thus saving the world from certain slavery over said evil (as adorable as she would have been- it simply had to be done for the safety of the world- you're welcome).  It turned out, 3 weeks later, that the tumor was classified as "pseudolymphoma" = a weird, and of course rare, collection of lymph cells in a weird spot that look like malignant lymphoma, and sort of act like it, but is benign and not really a big deal (likely disguise evil twin!). So it's gone, likely not to be seen again and also not the cause for any of my symptoms.  I am over-the-moon relieved that this is nothing to be concerned with, yet it would have been really convenient (since it was such a pain and needed removed & all) if it WERE the cause of my symptoms and then they'd have all disappeared by now.  Alas, that is not the case and I still have all of the symptoms I started with, but it's worth it knowing that I don't need to add Fight Cancer to my list of things to do. :)
I have not had any Dr. appointments since just after my procedure aside from PT & OT (I still need to blog about that- later) and it's been wonderful to have my body left alone.  Every poke, prod, test and procedure had left me feeling worse than before, and since nobody has seemed to find anything that helps me, it hardly seemed worth it.  I feel like I've finally had a chance to recover from it all and I'm back to my normal broken-ness; good days, bad days- the bad outweighing the good, but at least I'm used to that.  One good thing that has come out of all of this is that despite my Father's inability to do anything helpful, he and my stepmom seem to understand that this is not my gallbladder, not all in my mind and it effects every minute of my day- and that understanding is a good thing indeed.

May is Ehlers Danlos Awareness Month

I know.  

Not only am I late on my blog about Ehlers-Danlose Awareness Month, but I'm also late in blogging in general.  I have a lot to update on, but have been struggling to find the energy & brain focus in order to do so.  Family & work always win the list of priorities- and while I so wish it were in that order, it really goes work and then family.  My hope is that is only the case for now.

ON to EDS Month!

As May is Ehlers-Danlos Syndrome Awareness Month, I am stepping waaaaaay out of my comfort zone and sharing about EDS & how it effects me on my personal Facebook page.  It took going through what I've gone through in the last year to finally just come out and tell my friends and family that not only do I have this rare genetic syndrome, but that it effects my life daily, hourly, minute by minute.  This is very scary for me.  These are my first couple of Facebook posts:

Posted May 1, 2012

May is Ehlers Danlos Syndrome (EDS) Awareness month. While it is not an official Awareness campaign in most states, my hope is that it will become official soon- we desperately need awareness & education among the public & our medical professionals. I will be posting information on EDS & how it effects our family this month. I don't mind talking about it nor do I mind answer questions, in fact, I appreciate when a friend or a loved one takes an interest in finding out about this syndrome that effects our every day. :)

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After I posted the above information, my Stepmother shared it on her Facebook page saying the following: "My beautiful daughter and granddaughter suffer from this genetic disorder. Thanks for reading this and educating yourself!"

Wow!

Posted May 5, 2012

 What's Black & White & eats like a horse? 

A Zebra of course! 

A 'zebra' in medicine is refers to an unlikely diagnostic possibility- stemming from an old saying in teaching medical students; "When you hear hoof beats, think of horses, not zebras." Dr's will rule out the most common of illnesses first, which of course seems logical, and a real bummer when it takes years for someone to be finally diagnosed correctly- in our case with Ehlers Danlos Syndrome (EDS). EDS is considered a "Zebra Illness" which is why the zebra stripes are often seen in EDS awareness images. (Daughter, age 9) was 4 when she was diagnosed with EDS, (Son, age 7) will be 8 (we are waiting for our genetics appt. to officially diagnose him even though his Pediatrician and we are sure he has it) and I was 27 years old.

In our cases, EDS symptoms have been mistaken for the following:

Rheumatoid Arthritis, Lupus, Fibromyalgia, Depression (my favorite), Cystic Fibrosis (with GI emphasis), Benign Congenital Hypotonia, Metabolic Disease, cancer, and more... Living with a Zebra Illness means that most specialists don't know much, if anything about it, nor do they know what to expect, or how to treat the unexpected- resulting in longer hospital stays, and waiting longer for correct treatment than we should- causing more harm in some cases. THIS is why we need more awareness, funding & education about Ehlers Danlos Syndrome. The majority of Dr's we see would rather treat patients with more well known illness, and in some cases they treat us for illnesses that we don't have- hoping it will work anyway (resulting in longer hospital stays & waiting longer for correct treatment- which causes us harm). I don't say this to villianize Dr's- I believe this treatment is a result of the state of our US Healthcare system. We have fought long & hard & found a few FANTASTIC Dr's that want to help us first and study us second. We have been blessed to find a great pediatrician in our area (our pediatrician in CA was awesome too- We ♥ Dr. M!), neurologist, GP (for me) & geneticist. We are continuing to find the rest of the pieces we need to complete our medical team. It has been exciting for me to meet several Residents in the last year who are excited to meet their first EDS patient (me!), this gives me hope that the future of medicine will mean more options for those effected by Zebra Illnesses- including Ehlers Danlos Syndrome. ♥ :) ♥

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