Thursday, July 26, 2012

Parenting From A Bed; Grief, Guilt, & Gratefullness

My daughter is 11 months old today.  She is a  gorgeous, bright, happy baby - granted who doesn't sleep very well - but she is such a joy during the day we forgive her :)

My son is 4 and half now.

My husband just left for the movies with my son, after taking him to get a haircut this morning.  When he left, my daughter started screaming, because she knows when she is stuck with Mommy watching her, we are confined to a bed, and she has to play with me here, or in her playpen set up next to the bed.  She is walking, and wants to run around, be held, picked up, and allowed some freedom to explore.

She knows that Mommy can't give her that, and so she now cries for a bit when she is handed off to me.

My son is a bit different, he was 2 when I became sick to the point of being bedbound and losing my day to day "normal" functioning.  I was gone for 9 months in the hospital and almost died while pregnant, and he remembers.  He is also older, and loves Star Wars (thank God), so he loves cuddle time with Mommy in bed either doing crafts, reading, or watching movies.  But he also knows that something is wrong, and that Mommy is not normal, and doesn't quite understand why I can't make it upstairs to his roo. He was very upset last week when the medical transport ambulance came to take me to the dentist, and still calls out for me every time he gets home - because there were so many times he came home and I was gone, sick again, back in the hospital.

It's been 11 months since I came home from my long hospital stay, and yes, things have gotten better.  My lungs feel much better (most of the time) and I can now tolerate longer conversations and visits.  I can stay in my reclined wheelchair and eat dinner at the table with my family a few nights a week.  My walking has improved and I feel a bit stronger, and for that I am grateful.

But I still can't carry my baby girl.  I have never taken her and laid her down in her crib.  I have never given her a bath.  When she wakes in the middle of the night, I can't help her, because I am at my worst, and can barely sit up.  I  have never left the house with her to do anything. The playground, a doctors appointment, a playgroup.  Nothing.  And now she is almost one, and won't be a baby for much longer.  So I grieve.  I have missed her time as a baby.  I have spent it with her in a bed, or watching her on videos my family makes of her outings. 

With my son there is guilt.  Massive, crushing guilt.  I am no longer who he depends on.  While I was away in the hospital, his Daddy (my husband) thankfully stepped up and took care of him.  I have never taken him for a haircut, or seen a movie in a theater with him, or am the one he runs to when he is hurt, because he knows Mommy is hurt as well, and he can't always rely on me.  We just moved back into our house, away from our temporary apartment near the hospital, and the master bedroom takes up the entire upstairs.  We turned it into his room because my blood pressure and heart rate do wonderfully un-fun things on stairs, I can't handle them yet, even on my butt.  There are 15 of those suckers, and they are my Everest right now - blocking my way to spending special time with my son. No tucking him in, being able to stay home alone with him.  He asks every single day if I am feeling well enough to come see his room.  And every day I have to say no.  I am suffocating under the guilt and sadness of this simple act being taken away, no more going to my son's room.

I write this not to share a "woe is me" tale of how depressing life is.  Quite the opposite.  I know there are others out there dealing with the same, and that can relate.  Through this incredible grief and guilt over what has been lost to my health conditions in terms of parenting and my abilities as a Mom, I have learned just how damn strong I am.  And just how strong the other parents and people with chronic illness are that I talk to each day.   And I have learned just how much I have to be grateful for though this entire experience.  I no longer take for granted little things that most people don't think about when going through their daily lives.  

And I am alive.  This may sound cliche or trivial, but when you have come close to dying as I did with the massive amounts of blood clots and pulmonary embolisms I had, it means A LOT.

A week before I had my daughter, I was hooked up to the baby monitor at 3 AM, in agony having what I hoped were real contractions so we could get the show on the road.   When you spend 9 months in a hospital, you get to know how a hospital works, and become friendly with the mostly amazing nurses, tech's, and staff that are there.  So when a code sounded over the PA, I knew what it was.  I heard the footsteps running down the hall and shouting going on.  Then another code sounded calling all hands on deck to the surgical room in that wing.  A few hours later when the morning rounds were made, I learned that a fairly healthy 24 year old woman died 8 hours after giving birth to a perfectly healthy baby, bleeding out for an unknown reason, dying while her husband held her hand on the table in the operating room.  This is only one of many stories of loss, death, and suffering I heard while there.  Whenever I get stuck on what I can't do with my kids, I remember that Mom.  I have no idea what her name is.  But she was only a Mom for 8 hours.  I'm very lucky and blessed to be here at all for my kids, even in this condition.

I will get better.  I know this.  I believe it.  I plow through each day of sucky health by focusing on my family and helping others, and pushing my hardest to challenge my physical limits.  I remember that I had a childhood, wild and crazy teenage times, and have done a lot in my 30 some odd years.  There are many kids with this condition that are missing out, and my heart breaks for them.    But I believe they will get better too.  What do we all have left if we lose that belief?

So I grieve, I feel guilty, and I am grateful beyond words.  What a combo.  My kids know that I fight for them, and one day when they are older they will understand why Mommy couldn't go to the park.  For now I will keep trying to enjoy the time I have with them, even if its playing in bed, or snuggling when I can barely move - because they know that they are loved.  And some day's that's all I've got.

And it's enough.    

Thursday, April 19, 2012

Let's hear it for Costco! (This is just mind-boggling!)

Costco - A MUST READ

This is an email I received from my father, and I verified it via the source above.  For all of us spending a FORTUNE on prescriptions, this is pretty unreal!

Let's hear it for 
Costco! (This is just mind-boggling!)

Make sure you read all the way past the list of the drugs. The woman that signed below is a Budget Analyst out of federal Washington , DC offices.

Thursday, March 22, 2012

Super Broccoli Man Cures POTS! (I'm on a video making kick)

Friday, March 16, 2012

My Guest Post on Living With Bob (Dysautonomia)

Monday, 12 March 2012

No Need For Padded Walls: Staying Sane With Chronic Illness

Guest post time: After yet another unsuccessful attempt at scheduling posts here's hoping third time is the charm. For those who sent well wishes, big thanks and love to you all. My youngest made it through surgery and is now sporting a rather fetching, if fetid full leg brace. It's been a looooong week and a half and my exhaustion is at a point where I'm not really sure if I'm awake as I type. Fingers crossed this isn't a bizarrely bland dream and I am actually managing to get this posted. Or if it's a dream, a shirtless Jensen Ackles will soon be in too give me a back rub and make me margaritas as I type.

Either way I am still down for the count, so the guest posts will be rocking out for a while yet, whilst I try and nurse my body back from death warmed up, to death slightly more warmed up.

First up we have the fellow scifi geek and all round rockstar after pointing me in the direction of a Firefly themed Pintrest board, Claire Foust Martin. Claire is a "scuba diving marine biologist turned floral designer, turned chronic illness ass kicker. Mom/wife/blogger & fighter for patient rights for POTS & Dysautonomia". She can be found regularly blogging at STOP POTS Virginia, and her personal blog Bye Bye Bella Flora

 No need for padded walls: how to stay sane with chronic illness. 

Fourteen , count 'em - FOURTEEN - months either at home or in the hospital/doctors offices for me, with no social outings.  And I'm not the only one, or even close to the one with the longest record of time spent indoors.  I had been feeling a bit overwhelmed by the lack of outdoor time, and constant focus on my illness, my kids (with no break), and searching for ways to get better.  Life is about balance (insert "oooommmm" yoga zen breathing pause for effect here).  Even if you are not completely bed or home bound such as myself, you may be severely limited by your illness, and going a bit bonkers being indoors more than the average healthy person, not to mention being sick.

So how the hell do we all stay sane?  I REALLY want to avoid the padded walls of a psych ward, even though the padding wouldn't do much good - as I can't walk far enough to run into them.  Padding on the floor would be great though, in case of random face planting incidents. And as sexy as helmets can be - I'm trying to avoid those too.  But just in case, here are a few stylish options, for those of you that unintentionally share my love of hugging the floor and have a fear of the sharp hard edges found in bathrooms:
Pretty bike helmets...but kind of boring.

Bobba Fett's helmet, which I prefer - mainly for dramatic geek effect if found on the ground by anyone.

The MEGA NERD and hostile option - a Cylon helmet, with a pointy menacing looking top to impale obnoxious medical workers.
So here are a few tips to finding some balance, avoiding the padded walls, padded bed railings, various helmets, or being strapped down in a straight jacket for going nuts from the isolation and confinement of chronic illness:

1. Get online and find support.  This has been the biggest help for me - finding facebook groups, blogs, twitter friends, awareness groups with forums - and start talking and meeting others.  Just knowing you are not alone is amazing.  Many groups (including my site, STOP POTS Virginia, and the non-profit I am involved with, The National Dysautonomia Research Foundation) are starting up Skype meet ups.  Skype is free, and allows you actual face time with other people with your illness.  POTSgrrl recently did this very successfully as well.  Our Team Fight POTS Facebook page is also an easy tool to find online resources, and features many excellent bloggers and links to other pages.

2. Of course there are the standard reading, TV, and movie options - I find that I have become completely burnt out on TV, so I take days and marathon my favorite movies and shows that I have on DVD.  They are usually on in the background as comforting noise.  Hearing "Take my love, take my land, Take me where I cannot stand, I don't care, I'm still free, You can't take the sky from me."  relaxes me and if I need to lay back from whatever I'm doing, I know that Captain Tightpants is gracing my TV while I take a break. (This is a Firefly reference for you un-nerdy folk). 

3. Help others. In my current state, I feel like I am taking and taking and taking - and not doing much giving. Relying on others constantly for support is a real ego blow, and makes that whole "productive member of society" thing kind of tough.  Start a blog, volunteer online, post dirty pictures for poor lonely soles...wait...don't do that, but - you get the idea.  Finding a way to feel useful and helpful to others is proven to increase self esteem, take your mind of yourself and your illness.  It always reminds me that there are many people WAY worse off than myself.

Star Wars peg people!
4. GET CRAFTY.  My hands aren't working too well these days, and I know many other dysautonomia peeps deal with the same thing (and all the other muscle affecting, flaccid finger inducing illnesses do as well).  This has been tricky to figure out - but Pinterest has become my new best friend.  There are loads and loads of links and pictures of crafts on there - and I weeded through many to find some that will work from bed, are cheap, and I can do while my infant is sleeping, that I also can put down and easily start back up when I feel well enough.  I am embarking on painting peg people, and can't wait.  I plan to make Storm Troopers, Jayne with his famed hat, a few Superheros for my son, and maybe a fairy or two for my daughter.  Definitely Princess Leia for my daughter though - have to start her young (she's 6 months old).  And maybe a soccer player for my husband. I'm WAY to excited about these peg people, but that's the point.  You may even get crafty enough to open an store and sell your goods, or sell them and give part of the proceeds to your favorite charity.

5. Get dressed, put on some make up, and maybe do something wild and crazy to your appearance.  I just dyed my hair a crazy shade of maroon (it was supposed to be purple-ish, but my hair had other plans). The act of dying my hair left me bed ridden for days, but was totally worth it.  Since I am no longer working in a professional environment, this was my middle finger in the air rebellion at commonly accepted hair colors.  It may seem lame, but really was empowering. I love it. And everyday I am able, taking the time and expending the energy to put on real clothes, and maybe even some makeup - even if I'll just be laying around the house makes me feel less sick and more "normal".

I'd like this little nook somewhere in my house.
6. Last one!  Make your environment the most comforting to you as possible.  If that means you are stuck primarily in one room, try to get help, or do a little every day, to make it the best, happiest, coolest, or whatever adjective works for you - place possible.  Some people like zen, some like organized, some like lots of greenery.  Make your favorite or most used space (indoors or out) the most happy place you can, so you can literally go to your happy place.  I love color, plants, and things to be organized.  I had to explain to my husband why the chaos of having drawers left open, or things not in piles drives me nuts.  And I need to be as un-nuts as possible, and boy is he is on board with that.   We are moving back to our old town home that we own (and can paint), and our bedroom will have bold colors on the walls, because they make me happy.  The white walls of our rented apartment near my hospital have been tough, as I HATE white walls. So they are covered in pictures and colorful things for now, and we keep the room neat and organized.  It makes a huge difference for me.

Do you have any tips to help others stay sane while battling chronic illness?  Post them below!  Would love to hear your suggestions.


Tuesday, March 6, 2012

Medical ID Options/Links

So I have been chatting with my husband about what to tell the paramedics if they show up and I'm unable to talk.  But it's a lot of info!   And what if I'm alone with the baby?  This terrifies me, especially in light of all the recent new allergies I seem to be having (MCAD anyone???). 

I've been searching companies that produce ID bracelets and such, so here is a brief listing for those of you that may need one.  Even if you just have food allergies - these can save your life!

FREE/Templates/Cheap Options:

Free Medical Emergency Information Alert Card

A pretty way to wear your ID: 

If you really want to get fancy, a USB customized with your records and info:
MedID Card Personal Health Record System

Review: 911 Medical ID Card features USB connection, fits in your wallet

Hope that helps!

Thursday, February 16, 2012

On The Dark World...Of Valentine's Day Flowers

The Dark World… of Valentine’s Day Flowers

There is a secret world, a dark world.

A world shrouded in mystery and deceptions, lurking in the advertisements you see, hear and read.  The images forced upon you leading up to the most simultaneously loved and hated day of the year–Valentine’s Day. That world (dramatic pause) is the world of corporate flower sales.
Corporate flower sales? Really? Doesn’t sound too controversial, or mysterious, or even interesting. But these “big dogs” are ripping off unbeknownst consumers and shutting down local businesses in greater numbers each year.

Sunday, February 12, 2012

The Dysautonomia Dementors and POTS Patronus

I love Harry Potter.  I love the books, I love the movies, I love the brilliant world created by JK Rowling.

My life right now is pretty consumed by POTS and Dysautonomia, so I find myself making comparisons and analogies everywhere I look.  Which is actually not many places, considering I am home bound at this point - but does involve lots of movies, online stuff (no porn of course- I swear!), and books.

So when I last watched Harry Potter and the Prisoner of Azkaban (while in the hospital), which is when we first see the Dementors, I burst into tears.  I saw that dark black ghostly scary looking thing sucking the life out of Harry and them him passing out with the screaming noises in the background - and all I could think of was how that was how I felt day in and day out.  That was at the height of my "dark times", but I think many people struggling with dysautonomia and other life force/energy-sucking diseases can relate. POTS, Dysautonomias, CFS/ME, Fibro, Lupus, people going through Chemo, RA, any of the "spoonie" illnesses - we all struggle with days when the Dementors swoop in and gobble up every last bit of energy, happiness, and the ability to move and function.

Times like these, I usually have "overdone" it the day before, or even a few hours before - and it all catches up with me and my body shuts down.  Literally just stops working.  And overdoing it (in my current state) involves playing on the floor with my son for 20 minutes, or wheeling into the kitchen and standing up enough to make coffee, or rocking the baby for 30 minutes while in bed when she's fussy.  Showering is the real "Dementor's kiss" of death for me - warm (no hot allowed!) water causing vasodilation (veins dilating) coupled with arms raised above heart level to wash hair making my heart rate faster equals total body shut down.  I have to plan my showing carefully.

This body shut down - or the lifeless I've-been-attacked-by-a-Dementor feeling is pretty unreal.  I've never had it this intensely before, even after all these years of dealing with POTS.  I will literally feel it coming on, know I need to be laying down, and then my muscles stop responding and working.  Then I start shaking. Its an internal shaking feeling as well, similar to adrenal surges, all wrapped up in a nice ball of pain.   All I can think of is how I must close my eyes, must sleep, and hope I wake up with a body that responds again. I then pass out and sleep for a few hours, or lay in a semi-conscious state. Just like Harry.  Except I think he woke up faster, and chocolate helps you recover from Dementors.  Oh, how I wish chocolate would fix this with me!

This ties in with the whole Spoon Theory; having to delegate your energy to avoid this horrible crash.  My (and other "spoonies") life revolves around picking and choosing what activities to do for that day - and everyone has a different tolerance level.  I used to be able to work 16 hour days, or push through making flowers for 5 days straight over Valentine's, but would get very sick and need to recover for days after.   Now it's only one to two activities a day keeps the dysautonomia Dementor away.

My POTS Patronus (the spell that creates an animal Harry and the others use to defend against the Dementors) is currently an Octopus.  No particular reason except that octopi are super cool, and I'm a marine bio geek.  They are the smartest of the cephalapods (squid, cuddlefish, octopus, etc...) and mimic their surroundings to avoid prey animals.  They have 8 legs to get things done - so I'm assuming they are multitasking type-A non-stop workers like me.  I want that back - the ability to act physically the way I feel mentally - and get up and move again to get things done.

What's your POTS (or other Spoonie) Patronus?  Why? What do you do to avoid the crashing Dementors Kiss?  I'd love to hear!