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

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.

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! 

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.  

Second Step: G is for Gastro

 I met with my new Gastro-Doc yesterday.  I was a bit more anxious about this appointment as I knew this Dr. was a man; while I don't have screaming panic attacks over this-, my preference is to be naked among strangers with the same parts as me, if I must be naked among strangers at all.  I'm not even going to ask if it's normal that this-of-all-things is what I was anxious about lol.  As I waited in my patient-room,  my door was ajar enough so that I could see who was walking down the halls (this is before all the nakedness), I kept seeing  this big boisterous Dr. walking up & down the hall meeting the patients in every room before mine-eh...anxiety!  Finally a very tall, older man came in and introduced himself with a kind smile & a handshake.  He was authoritative, but his manner was humble & soft- this will do just fine.  (whew)  I answered his questions about what I've been going through over the last 2 years.  He told me he was familiar with Ehlers-Danlos Syndrome, and researched it more before our appointment (my heart skipped just then).  He surprised me by saying that he's not convinced that my Gastro-troubles are related to EDS.  Since I'm adopted, and I don't have any real idea of my genetic history, plus the fact that my children's EDS symptoms are so extreme makes him hesitant to limit our search for answers to proven EDS-related issues.  Right off the bat he says that I've already been tested for what he would have initially (celiac, etc.) and they came back negative.  He's stumped already- I'm noticing a theme here...   However, I have hope in this Dr., he's not ushering me out the door; he's concerned with finding the answer- that in itself is reassuring to me.

The plan, as he explained it to me, is to test in tiers.  Tier 1 is to get base line blood work, a Lactose Intolerance test (to see if I have an actual allergy- which I don't believe I do, or an intolerance-duh) & endoscopy.  Once those results come back, they will either guide us into a specific direction or not- moving us to to Tier 2; more invasive testing. Colonoscopy (whimper), lower GI and he wants to add a full abdominal CT scan because he felt  an "fullness" in a specific spot of my abdomen where I have also been having tenderness (during the naked part) along with whatever tests come up in any new direction from Tier 1. I'm not too concerned about the "fullness" yet, as he said it might just be an organ that is there and can be felt because of my fat/muscle loss- this is what I have been assuming since I started feeling it.  I can also feel my large intestine when my hand is on my abdomen and can feel "stuff" going through it- like a snake that's eaten a mouse- not cute.  I don't at all remember what Tier 3's plan is, but I'm sure I'll know before we get there.  This Dr. plans to consult with other GI specialists in the area as well as contacts he has at Johns Hopkins.  He says that he would eventually like to send me up there as we get closer or further to/from a diagnosis (my attention span allowed me to gather that I'll eventually be going there).  
I went to the lab immediately following and decided to ignorantly go ahead and do the lactose intolerance test (not realizing yet that it was a 4-hour long test- I am once again so thankful to be able to do the fundamentals of my job from my blackberry) since I hadn't eaten yet.  That was interesting!  I drank this gritty stuff that tasted slightly like watered-down Tang; it made me feel queasy & light headed (not sure if it was the "tang" or from not having eaten), which made the nurse nervous (even though I explained that I'm not scary-dizzy, just dizzy) and earned me a comfy recliner to relax in during the 4-hour test in which she drew blood every 20 minutes.  The nurse was very nice & pleasant, I'm still amazed by this- what a difference it makes in these uncomfortable situations.  After the test was over, I had to head into my office, feeling awful, but putting on my professional face.  It sucked.  I got through it by just isolating myself in my office and getting done what needed to be.  I'm so thankful for my understanding Director- he's one in a million.
Today, I feel worse than yesterday; like I have a boulder 3x's my size in my abdomen, I'm exhausted, achy (normal), swollen from head to toe and I have a fat lip (figure that one out for me please!). I'm also much more lax in my spine, I feel my tendons slipping painful back & forth over & under my vertebrae, this is most painful and I'm glad it's not something that happens all the time.  It feels like my actual vertebrae are slipping back & forth (which would kill me, so it's not that lol).  Ugh!  Yay for my big comfy chair!!!!  I'm also relieved it is Saturday; lots of rest on my agenda.  I have a 2 week-long break between appointments, and the next one should not involve testing (just a follow up on the journey with my GP). So, yay for that too.

Not very flattering; but me writing this post & my blessed chair/laptop/giant head phones-so-I-can-hear-my-iPod set up just the same. <3 

~Kris

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.