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.