A crisis in anonymity

  Upon starting this blog, it was important to me to have a form of anonymity; not a lot, just enough to help me to feel free enough to release these inside thoughts of mine and not be concerned with burdening anyone in my "in-person" life with the heaviness of what EDS puts me through.  I'm not sure why I've felt that way, but perhaps it was one of the stages of being able to relate to myself as chronically ill.  I am afraid of others seeing me as ill because I am terrified of seeing myself as ill.  Now, I can't get away from it, I am ill, but it's not as scary or even as bad as I thought.  I can still find love and peace and fun and blessing, so I'm carrying on. This blog isn't completely anonymous; my name is in fact a form of Kris, and I have a lot of friends who call me Kris.  I do not live in the exact city listed, but I live close enough to wish that I lived there :).  My pictures are all real and truly me.  The only real anonymity is that none of my in-person friends or family can find my blog by searching for me, nor are they aware that I even have a blog.  Well, they didn't know until recently.  It's important to note, or remind you, that I am not from this part of the world, so most of those that I love are on Facebook, and that is the medium we keep in touch.  Though people locally can probably see that I am sick, most are polite enough not to ask.
  It all started in late November, when I was getting exponentially sicker by the day.  I was losing weight rapidly and just really going down hill, yet I was determined to get to A-10's Make A Wish trip despite my Dr. telling she did not want me to go. My dear friend- a sister of my heart- Jessica chastised me for not letting people in my life know what I have been going through.  How they could be praying for me, or helping my family in some way if they only knew.  I got very uncomfortable for two reasons; 1; what I described above and 2; because I realized it was only my pride that kept me from doing this, which is pathetic, and that I am keeping myself from growing as a person.  So I wrote the following note on Facebook:

My Jessica is mean

by Kris on Tuesday, November 27, 2012 at 7:27pm ·

So I have this Jessica, and she is one of my most dear friends.  In fact, she is MY Jessica and she loves me a whole lot, and while you'd think the opposite, this love she has for me makes her mean.  Why is she mean???  Well, I'm glad you asked; she is mean because she's making me write a post on Facebook to tell you, my other loved people, that I am sick and need for those who pray to please do so. 
She's so mean!
I don't want to tell you that I'm sick!  I want to tell you how much I love living in Virginia in the Fall with it's bright red & orange leaves all over the trees and yards.  I love how if you drive down a small street at just the right time, you get to drive through a cool leaf swirly (that's only happened to me once, but it was SO COOL!).  I want to tell you how proud I am of my M-girl for making the Vice Principal's list, which is no easy feat while being in the GATE program in the 7th grade.  I want to tell you how happy and beautifully A-girl is growing and how proud I am of how much of a warrior she is over her own health, educational and social struggles.  I want to tell you how blessed I am that my 8 year old Man-Cub still calls me his beautiful Mama, and loves to snuggle with me and still has the sweetest little voice you ever did hear.  I want to tell you how excited I am that I get to have that just-like-heaven feeling of watching my kids smile with delighted eyes for 7 days straight during A's Make-A-Wish trip starting this Saturday!
We all have stuff; life is hard.  Mine certainly is not the hardest; I consider myself one of the luckiest people alive.  It's because of that, that I haven't put a wholoe lot out on Facebook about being sick, because being sick hasn't taken away any of my blessings, and let's face it- it's way more fun to think on and talk about our blessings than it is to talk about illness.  However, I am here, obeying My Jessica and telling you that I could use some prayer & good thoughts (because she's mean).   Alot of you know that I have degenerative connective tissue disorder called Ehlers Danlos Syndrome (EDS) Types III & IV (also calleld Classical & Vascular types- you can learn more at www.ednf.org) which causes the body to have a lot of different problems since a lot of our body is made up of connective tissue- including our GI tract; thus my need for prayer.  I have been having trouble with food sensitivities for the last few years and have not been able to tolerate any solid food at all for nearly a month.  After more testing, I was diagnosed on Monday with gastroparesis- where the stomach is essentially paralyzed and it's probable that the same issue is in my intestines.  Try as I might I am at a point where I am barely able to get any calories or other nutrition into my body and my size 2 jeans are falling off my 5'8" frame.  I would really like to get better; my life is revolving around feeling like I'm about to be sick, or pass out, or fall over, or burst wide open.  I would LIKE to just be better quietly, without any attention being put on me over it.  I would LIKE to just quietly rejoice in eating sushi and sleeping all night without waking up from pain or sickness.  MY JESSICA, however reminded me that God didn't make us that way.  We were made to be-friend each other, and love each other, and pray for each other.  Frick'n Jessica.
So here I go: please pray for me. Please pray that I will get better, and that I will be able to enjoy Anika's Make-A-Wish trip without any trips to the hospital (for any of us!), that I will be able to get nutrition and feel good enough to enjoy these wonderful memories that we are about to make.  Please also pray that my Dr.here will be able to get me in to see Dr. Levy, an EDS specialist at Johns Hopkins soon enough.  Please pray that my family will be proud of how I am trying to be brave and strong, when I don't feel strong and I don't always feel brave.  Lastly, pray for blessings on My Jessica, because I love her way a lot, even when she's mean.

I could not have anticipated the responses I received from this note; so many people who I know and love, but live across the country (where I am from) had no idea.  39 comments by people who love me, want health and good things for me, and even thanked me for sharing.  Now since I've been in the hospital, they all want to know what's what.  So, I am taking the leap from anonymity into  sharing my life.  This scares me, but at the same time this falls right in line with living my life wide open the way I want to.  So I'm going to do it.

In order to do it; I've decided I needed to change somethings about the way I blog.  One small change ncludes a slight tweak to the name in order to not confuse things with a certain Disney Movie.  Most other changes are just to keep myself accountable to what & who I want to be.  I want to blog positively about my life, not just my illness- but as it touches every aspect of my life, it will be there.  I want to inform, but most importantly I want to stay true to my goal of showing others that living with a condition like this; losing abilities, getting sicker and sicker, does not mean that life is nothing but gloom and doom.  Life has much to offer despite  unsavory circumstances; I feel that in many ways we wouldn't even have the opportunity to know that if we didn't experience those circumstances in the first place.  I AM one of the luckiest people I know!

When the new blog is ready to go live, I will post the address and personally invite those who have commented on this blog to go to the new one.  I truly hope you will follow me.  Please comment on this post if you'd like to make sure you get invited.

Be well, Be blessed, Be happy Dear Blog,
 All my love,
 Kris

Still here, thank you.

Thank you.
Thank you  nurse K for the medication.   Thank you Mi-mi for cleaning the room while I was gone for that procedure.  Thank you for the new IV.  Thank you for the 3am blood draw. Thank you for helping me clean myself up.  Thank you for not laughing at me when I cried that I just wanted to go home.  Thank you for all of your help today, I hope you have a good evening.  Thank you for all of your help last night, rest well today.  Thank you for your visit.  Thank you for your kind card.  Thank you.

There is something so very personal and humbling and exposed about being in the hospital.  I don't get to do anything by myself, and I feel compelled to thank everyone around me for doing their job.  I hate it.  I could probably have a better attitude about it, but the fact is that I like doing things for myself.  I do not like being this vulnerable, though I'm still very thankful.

I'm still in patient, but I'm springing out for Christmas.  From there I will be monitored closely to see if I'm progressing on the outside with the threat of being re-admitted ever looming.  I have worked very hard with the help of an NJ tube to get nourished while in here, and I will have to work 3x's as hard outside.  I...can't...wait....to....get.....home!

Quick Update

Make-A-Wish made my entire family's dreams come true.  I made it through the trip, but only barely.  We got home late Friday night, but Tuesday afternoon, I was admitted to the hospital where I've been ever since.  Not sure how long I'll be here, but I'll update more thoroughly when I'm feeling better-  I haven't been able to return texts, emails or other messages because I just don't have the energy, can't stop puking, feel so awful....on that note....gotta go.

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. :)

~

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. ♥ :) ♥

~

Sunshine

I can see the sunshine much more easily today.  I am reminded of how good it is to know that the sun is here, even when I can't see it through the clouds or the curtains I use to kick it out of my room so I can slink into the darkness of my bed in desperate search of refuge from  the ickyness & pain swirling through my body.  The sun is constant  and warm and makes things grow colorful and healthy and what a blessing that is!

I finally found my appetite again about week after this last procedure.  I have been increasing my meals slowly with green veggie juices, raw veggies, a little fruit (probably not enough), avocado along with oatmeal mixed with walnuts, boiled rasins & raw honey w/ a pinch of cinnamon (tasty!).  I would really like to get a juicer and a better blender as it seems it might be easier to drink more nutrients than I am able to eat in a day.  I am experimenting with ways to eat better, and give my body the best chance it can to heal & carry on.  As for the "thing" that was taken out of me;  I should find out next week what exactly it is.  I'm honestly not terribly concerned about it, I've told the few that know about it that it was clearly the remnants my evil twin that was no match for me.  The very idea of it possibly being cancer just fills me with a sensation that feels too big to fit into my body- that if this thing is indeed something like cancer- I'll just kick it's ass right out of me so fast that it will hardly be much of a detour.  Regardless of what it is, something (EDS &/or evil twin remnants) is causing all of this trouble in my body and so this adventure of fighting it is already well on it's way.  So far the Dr. hasn't given me any helpful information on how to feel better, stop losing weight and live, so I'm left to my own grand ideas (which is quite scary considering what I did to my evil twin before I was even able to hold my own head up!).

During my time convalescing this week, I had a heart to heart with my husband.  He feels terribly that everything happened the way it did.  He has decided to go to treatment for his anxiety & depression that he has been suffering through alone (I didn't know that he's been having symptoms of anxiety for sometime now- which makes me so sad).  Being that he's not been able to find work that pays what he used to make (which wasn't a huge amount- he was a public school special education teacher- an amazing one at that!) is frustrating  to say the least, but for a man who used to be the SOLE bread winner for his family, it only makes sense that he is struggling.  We are also tweaking his diet to add more whole, raw veggie/fruit goodness to help him through.   It feels awful that we have been on different planes for the last nearly 2 years as we've tried to protect each other from what we've been feeling, and in the end weakening our bond.  We've always been like two puzzle pieces who fit uniquely together, and I miss that.  I am so glad that he has chosen to help & take care of himself. 

As for my Dad, I have decided that at least for now confronting him would be pointless.  Several months ago he informed me that he had changed his life's philosophy to "I'm going to do what I want and I don't care what anyone thinks of it." When I had challenged him since then about things he has said/done to me or my children being hurtful, he told me that I need to just trust that he loves me and decide not to feel hurt.  In the same conversation he told me that I need to be nicer to him and not disagree with the way he treats me- (um...ironysayswhat).  So, this is the philosophy he's decided to adopt; I don't understand it, I don't respect it, but I need to accept it and go about my life in the healthiest way I can- spending less time with him.   

So....back to the sun always being there.  It's dark out my window at the moment, but I know the sun is shining on someone right now, just as it will on us again tomorrow. ..what a blessing.  :) 
I hope you are being blessed today.

Photo details: Morning Sunlight Bursting Through Trees, taken by A.K. Entingh.

All by myself.

March has clearly gotten away from me.
LIFE has gotten away from me, such as it does I suppose.
Much has happened over the last month and some days since my last post; much accomplished & much not.  I had an OT/PT evaluation that was extremely educational & beneficial to me- it deserves it's own post (which I'm working on), so you'll know all about it then.  Cardiology gave me a full work up including a resting echo cardiogram, a stress test echo cardiogram, blood & a 6 day heart monitor test.  Everything came back great except that my blood pressure is too low (which we knew) & I have arrythmia stemming from both the supraventricular & ventricular areas of the heart (not at the same time, thankfully).  We've decided to put a pin all of that until May & decide then if meds are needed.  On the GI front, I've had a complete abdominal/pelvic CT scan after the results of my small bowel series revealed something abnormal-ish - a blip really - at the very end of my small intestine.  The same blip in the CT scan resulted in my first colonoscopy last Friday (whatever pride I had left after giving birth in my car almost 8 years ago is now gone forever).  During that test, the area where the blip was, looked fine (go figure!), though there was a growth found elsewhere that was almost completely removed.  I woke up feeling a horrible stabbing pain in my lower abdomen, when the Dr. walked in he said "Hey! That's where I took the mass from!" as if that were a coincidence. The Dr. then said "I think I got it all...but I'm not sure."  hmm... "It was at an odd angle, so it was difficult to see and get it all."  Well, what is it?  "I don't know, we'll have pathology look at it and you'll know in 3 weeks."  Is it a polyp?  "I suppose it could be, but it doesn't look like one."  Is it a cyst?  "No." I didn't ask what I really wanted to ask, because I figured he didn't know, since he didn't start out with 'You have cancer.' Another test, less knowledge.  This is getting frustrating.
I feel brushed off.
The nursing staff kicked me out before I was ready (in my opinion).  I couldn't even stand up without holding on to someone for dear life, let alone walk out to the car.  My Dad took was the one who took me, since my husband was working, but mostly because he faints at the sight (or even sound) of anything medical (he did not choose his wife wisely).  My Dad wanted to stop by his house and make sure his dog was ok (3 hours after leaving her with plenty of water & food in the nicely air conditioned house on an 80 degree day).  I begged him to just take me home; I felt nauseas and sleepy and I wanted my bed.  I fell asleep in the truck and the next thing I know, I had been left in an empty & hot truck.  I felt hot, and even more sick to my stomach, the world spun and I felt like I didn't have any air.  I slunk down to the floor of the massive Dodge Ram truck and opened the door where upon I fell out onto the hot cement.  Things went dark and then light again, then dark, always spinning, feeling horrible.  I couldn't lift my head.  What the hell was happening & where was my Dad??????  He finally showed up and asked what I was doing (and he actually sounded a bit annoyed!???!).  He got into the truck on his side and turned it one while I tried to climb my way back in.  I clumsily moved the vents so that the cool air could blast onto my face.  I found an unopened water bottle in the cup holder, stole it, drank it down and immediately got sick (in my Dad's empty coffee mug- ha!).  My Dad said nothing.  He asked me if I wanted to go out to eat (if you're imagining a cartoon with eye balls bigger than my head- you're be pretty much on target as to what I wanted to look like at that moment).  I said no.  Then he said, 'Well whenever I have a colonoscopy, I'm starving afterward and I go out to eat."  I don't feel hungry, I feel sick & sleepy and I want my bed (gee....I think I said that before....)  "Well," he said, annoyed again "I'm going to the drive through and will get myself something to eat."  He went to McDonalds.  I tried to go back to sleep to ignore the smells.  I was so happy to finally have gotten home when we finally did.  My husband & kids got home a while later and I tried some broth, but mostly I just slept.  6 hours later, it started.  I was so sick.  I couldn't stop vomiting.  I vomited for 2 hours straight.  I cried to my husband for help, but he couldn't wake up (he's been experiencing anxiety for the first time in his life, and some Doc-in-the-Box gave him Xanax). I literally couldn't stop, my muscles through out my entire body kept contracting and contracting, not even stopping to rest.  Then I started to shake violently and I really got scared.  I didn't know if I should call 9-1-1 or what!  I called my Dad, It took forever to say what was happening because my muscles were just constant, he finally understood and told me he'd be right over.  30 minutes later he was there, and the first thing he said to me once my husband helped me out of the house and back into that damned massive truck (!) was "Why didn't you just call 9-1-1?!" ~whimper~  Once at the hospital, things moved pretty quickly.  I was apparently in shock and they hooked me up to all kinds of things.  I kept seeing my Dad ask each professional if they could either admit me or discharge me since he had a plane to catch in a couple of hours.  "I have travel insurance on this trip, but I'd like to go on it if possible." he said with his condescending smirk.   I was discharged after drugged & hydrated & we got home around 4am, he left on his flight at 6.
It's taken me these few days to recover from the ordeal.  I don't know if it was because I couldn't eat for 2 days before the procedure and then got so sick, or just recovering by itself, but I still have no appetite at all.  I'm forcing myself to eat what I can, but I get so nauseas; and the meds the Dr. gave me at the hospital give me a horrible headache, so those don't really help me to eat. I feel so tired and sick all of the time.  I have to work though, sick or not.  My husband does not have a stable job since he lost his teaching contract in June 2010 so I'm it.  The bread winner (thought I don't feel like a winner- far from it).  Aside from feeling so ill, I'm having a hard time digesting how I feel by my Dad & my husband.  You'd think that a married woman who lives 20 minutes from her Dad & Stepmom (who was traveling at the time- they are retired & travel a lot) would have someone to help her when she can't help herself.  Apparently, I don't. I left my friends in California when I moved.  I'm all alone. This is a stark reality and it scares me.

Strong in spirit

:0)
That's me; strong in spirit & in my ability to be a goof.  I sometimes feel frustrated that these two characteristics of mine, being as large as they are, aren't strong enough to overcome or overpower my body's weaknesses.  Other times though, I realize they help me to transcend my body's inadequacies & find the laughter & joy that lay around unnoticed in our world of hyper-activity.  This week, in my continued state of more-than-usual pain, GI illness & of course the unending balance of my job, family & Dr. appts, I found myself able to create a smile in others by simply being there and being open to the opportunity of experience joy- and it blessed me more than anyone.  I found it as I walked the halls of the hospital, wearing my knee-length napkin gown & robe w/ my Punky Brewster-inspired colorfully striped knee socks & converse and stopping to talk with those I recognized (and some I did not) in along the way to my next destination.  I found it when talking with the technicians and nurses in the cardiac unit about yoga and how it's benefited me, even when my body barely allows me to do a beginner's DVD (despite my years of practice)- that now has said technician & nurses looking for those same DVD's for themselves.  I found it at work, while after a really bad (but punny!) joke, someone marveled at how obvious it is that my spirit, being joyful,  is so separated from my body that binds me to pain.  These small moments have each propelled me to the next opportunity & inspired me in a way that good health could not, and while in my weak nature I'd still take good health, I'm thankful for the opportunity to have a glimpse at something not bound to the earth- grace & joy.

Hey!  Did you see that corduroy pillows are making headlines????
Ha!
:0


As for an update: I don't have much of one, just another week of testing under my belt.  This week should be the last, with a full abdominal & pelvic CAT scan tomorrow (meow)  and an OT/PT evaluation on Tuesday.  I'm expecting GI answers once the CAT scan is read, my biopsies should be coming back around the same time (I hope).  I am currently wearing a heart monitor for another 12 days, but I'm only expecting some blood pressure regulating meds for that (for low b/p).   I'm ready to be done with these tests, and move on to some solutions! 

Hanging in...

...and that's all I can do sometimes.  I've had a break from Dr. appointments, which has been a relief, though I've been in contact with the GI since my stomach pain was so much worse since the endoscopy.  That being said, I feel like today my stomach has been better than it's been in the last week, but I'm unsure if it's getting better, or if it's because I'm just eating a bare minimum.   It seems the cortisone shot has taken effect in my right hip by improving it's pain by about 50% (which is quite remarkable), but I am missing being able to take helpful meds for my other joint pain (I usually use a combination of naproxen and heating pads, which never take all my pain away, but take the slightest edge off- I am terrified to take anything that will make me "out of it").  I'm sort of in an annoying place in my head; my thoughts are consumed with how awful I feel- and I try to NEVER allow myself to do that, since I am my family's bread-winner and I must continue to work (a fact that I think is making my husband very depressed, which really really sucks), and I just don't like hearing myself whine when I still have so much to be thankful for outside of my stupid body.  I think if I could just get a good night's sleep, that would be something in the right direction- but even that eludes me right now.
I'm taking things a little at a time; hour by hour, minute by minute if need be...praying for this slump to just go away...

I thank you for reading and your comments, they mean very much & encourage me. :)

ROunds on Elasti-girl

This posts is just through rounds of the day- well the week that has past.  Too many Dr. appointments, I even post-poned one because I have too many great big feelings about the appointments I was able to make it to.  So here it goes:

A week ago last Monday, I had an appointment for an echo cardiogram, which went very well; I was so thankful that it was a female nurse a sense of humor gelling up my naked chest and maneuvering the ultra-sonic wand around my left breast- helping me to forget that I was so cold, I could probably cut glass.

I got to watch the entire thing and as completely intrigued at what looked, to me, to be a perfectly formed and working heart: 

Because I have (thankfully) survived Endocarditis when I was an infant, We were most interesting in looking at the Mitral valve because I thankfully survived Bacterial Endocarditis years ago, as well as the aortic root and valve as a previous echo showed Aortic Root dilation (aneurysm)

www.yalemedicalgrou.org.jpg

stanfordhospital.org

This was the first time a they let me watch the screen, before they always had the screen turned away from me, but things usually weren't going well then, and I didn't really care what I would have seen anyway.  THIS experience was completely different though; I to to watch the entire procedure, and it was beautiful.

Everything looked great to me, which was confirmed by my Cardiologist 4 days later.   He said that he was surprised that structurally, the heart is functioning well- yay me- gold star!  He wants me to come in for a stress echo to see what my heart is doing when I'm having the frequent arrhythmia's  & fainting spells; I was supposed to get this done tomorrow, but I postponed it until the 24th because of everything else going on.

That brings us to this week:  This Monday I had my first endoscopy.  

Is it too late to tell you all that I DO NOT like UN-invited touching?

  I don't.

     Nobody cares.

         On top of that, as I'm getting ready for my scope (which consists of me laying on a bed, feeling perfectly fine whilst still in my work clothes having an IV inserted-with which they will, for a short time leave me incapacitated), the nurse comes in & tells me that there is a national shortage of versed, the amnesiac used to keep the patients from really knowing what's going on and immediately forgetting what they are feeling.......WHAT?! Can I just leave now?  Apparently not. :(  Off I go.  They give me the drugs that enable me to move into the positions they ask me to move into, to put that god-forsaken tube down my throat making me gag & wretch, yet disabling me from punching or kicking anyone for doing this to me. They ask me to swallow- eh???  I feel the tube moving down in places I've never felt before, and I never hope to again.  I feel pinching and rotating until it's over. Ugh.  I didn't post any pictures of this because they are disgusting and I'm nice- you're welcome.

In recovery, I see my husband come to my side and then leave very quickly.  I don't see him for a while, I later find out he ran out so he could faint in the next room....nice.

The Dr. comes in an tells met hat my stomach is literally covered in small ulcers and that there is something abnormal at the base of my esophagus; he took a lot of biopsies and prescribed nexium.  I wasn't able to ask any questions (drugs), but I understand now that the biopsies are looking for H.pyloria, a bacterium that causes ulcers as well as cancer- and that's all I have to say about that.   The GI Dr now wants me to have a full abdominal CT scan and lower GI & colonoscopy :::shudder::::

 I am very confused.  My stomach problems are in in my intestinal area, not my stomach.  Wouldn't I feel ulcers in my stomach and my esophagus???  Well...NOW I do since the Dr. took out chunks from everywhere.  I actually mostly feel it in my esophagus- swallowing is very painful. 

I went to work the next day, feeling in pain & awful.  I could barely eat and everything hurt, but I grinned and bore it thinking it was normal, but apparently looked really pale and not great, so my Director (again, awesome) sent me home and told me not to bother coming in early the next day (I had a rhuematology appointment so I planned to come in after ward.

Fast forward to the next day, I went to the Rhuematologist who, despite my attempt to keep an open mind, I didn't like.  She asked me why I was there, and I told her.  She examined my my hands (which are hyper-mobile, but the least hyper-mobile of the rest of me) and concluded that she didn't really think I have Ehlers Danlos Syndrome.  I explained that the diagnosis that I received from the renowned Geneticist was not up to debate & perhaps she'd like to perform the complete Brighton Score on more than just my hands.  She did and apologized once she got to the lower half of my body and watched both knees & hips pop out, ankles slip and my  negative arches.  

Now that we were past that, we started talking pain.  Because of my newly discovered stomach issue- I can no longer take any pain medication stronger than Tylenol (might as well be filled with air), so the Rhuemy suggested I get a cortisone shot in my most effected area to help me at least get around.  While the decision as to which body part make ails me the most was difficult to chose, the hip who made the now-famous public fall won out by a landslide.  I got the shot and marveled at how little it hurt until  about 10 minutes later when MOTHER F#*%@r it HURT!

There was more drama with that Dr. appointment; biopsies from the endoscopy kept bleeding; needing cauterized, transfusion, Vit. K & B12 shot with 2 days of rest at home.....too much to write and go through again in my head, but here I am.  Going to back to work for as long as I can make it tomorrow; suffice to say- this sucks, and I'm praying things get better.  It's been prophesied (by a Dr.) that I should bee feeling really good by Friday or Saturday, which will be helpful since Saturday is the day of my company's annual banquet.  

Just keep going...

I never really thought about it before now, but I suppose this has been one of my mantras since I was very young.  In the shadow of whatever mountain standing before me, it has never been my nature to question whether I am going to traverse it or not....as long as my goal is on the other side, I will just keep going.  This nature of mine; the innate bullheadedness that propels me forward against my every adversary, has not only gotten me to where I want to be (or at least closer to where I want to be) countless times , it has also allowed me to keep, for the most part, a joyful glint in my eye & a silliness to my being.  If I just keep going, there isn't time to sweat the small stuff, or cry over any proverbial spilled milk.  Granted both the bullheadedness & my silly-heart has gotten me into trouble as many times as it has saved me from it- I'm so thankful that it has been gifted to me.  Just keep going...because surely somewhere along this journey is sure to be a good laugh- thank God! :)

 
This week has been difficult, but it hasn't swallowed me.  I went back to work after my fall, made the first joke so that everyone knows that I am okay with my life's imperfections and kept going.  I am starting to finally feel the physical pain start to lessen, so hopefully my bruises and unsteadiness will follow suit.  I am still worried about what this means; the shelf-life that is my mobility, but seeing as there is not a damn thing I can do more than what I'm doing, I'll just keep going regardless.
  I appreciate the comments and support you've given me more than you know.  Just being allowed a moment to worry about it, grieve about it is so free-ing and gives me the courage to just keep going.  Thank you for that.

I'm trying to be responsible and putting credits on images that are not mine, I don't know who these websites are, or what they say or standfor, I was just looking for images:

Pic1 google images: vastfitness.com

Pic2 google images: danielyount.com

Pic3 google images: genekwok.tumblr.com

Pic4 google images: bravegirlsclub.com