Friday, January 6, 2012

The Year I Spent In A Room Not Complaining

So today marks the first day a year ago that I became seriously, life changingly ill.  I was ill before, but it was manageable. But this day last year my entire life changed, and it has not been pretty.  I debated whether or not to publish this, I've been writing it for a few days as this date loomed, but I know there are others dealing with these same issues, so maybe it will help someone.

The Year I Spent In A Room Not Complaining

My son and I snuggling with a bag of chips.
Not to be a downer, but I have to say that 2011 sucked majorly. But it also brought great joy, and I have tried to focus on that as much as humanly possible.  The birth of my daughter was nothing less than a miracle, and she is healthy and thriving.  I have an amazing family.  I have tried to remember how good I have it compared to the majority of the world, those living in harsh conditions in third world countries, people with terminal illnesses, the homeless, etc...

But really, I have been worn down by the events of this past year, and my current state of health.  And the fact that my only outings from beyond the four walls of a room have been to see doctors.  I have spent the entire year either in a hospital room, a bedroom, or on a good day - a living room. I've been on our balcony 4 times. Needless to say the four wall situation is closing in on me and had gotten old a long time ago.  Putting on a happy face and being fairly silly and upbeat is my natural tendency, not in a fake way, but because I usually really truly am grateful for my life and everyone in it, and I enjoy trying to make others laugh. But this has been the trial of a lifetime, and I have had to fight with every ounce of my being to stay sane, let alone positive.  So I am tired.  Physically, mentally, spiritually, and emotionally. 

I feel like I have been robbed.  And I am tired of having to deny this for the sake of being grateful.  Robbed of time with my son- and while hospitalized, robbed of time with my husband, robbed of my body working, of my business I had to shut down, of all the stuff we had to sell to pay our bills, the house we had to move out of, the cars that are gone, the friends that turned out not to be friends.  Robbed of my life.  The option to participate in everyday life.  I feel like I lost an entire year, and there is still no end in sight. This does not change the fact that I am grateful and aware that there are many others out there worse off than me.  I do not have cancer.  I am not dying.  But in all honesty, many days I wish I had a "normal" disease that had a cure, or an end game.

When friends or family preface whatever they are dealing with by saying, "this is nothing compared to what you've been through", it makes me sad and a little annoyed.  Everyone's pain is real, and is relevant to their own circumstances.  I don't look down on anyone for being bummed out about the crap going on in their life.  Everyone has legitimate struggles and hardships, and they are not any better or worse than mine.  I do get annoyed at petty griping, and want to smack some people for posting on Facebook that their life sucks because they are in traffic - I know it's annoying - but I would kill to be in traffic.  And I think delivery has to a lot to do with it - whining about stupid crap makes me want to shake someone.  Dealing with life issues or being snarky about stuff that you know is annoying but not the end of the world is cool with me.  But seriously, people take many things for granted, and I want to smack some gratitude into them.

So why do I give others a pass on complaining, but not myself? Not sure, maybe it's in an effort to avoid pity, or maybe its unconscious pride at getting through these tough times, or I really do want to be full of sunshine and butterflies and humor about my situation.  But I am not.  I am over it. So I'm going to complain for a minute, because I have not shared with many people just how hard this past year has been.  Not to make you feel bad for me - but so I can stop carrying this burden of make-the-best-of-it-itis.  I am sick of making the best of it dammit.  So if you don't want to read about how much 2011 sucked for me, time to go to another website.  I will follow what sucked with what didn't suck, because many joyful things have happened as well.  Please understand that I am mourning the loss of my old life, and trying to cope with the reality that my new life is different.  But first - I will complain.

Things that sucked:

1. Being pregnant.  Not the baby growing inside me part of it, but what it did to me. As Shrek says, "Better out than in". Love my baby girl, and this has nothing to do with her.  The toll on my health has been indescribable.  I went from being an active, hard working mother and wife to barely being able to walk to the bathroom.  Yes, I needed to loose 15 lbs, but my business and chasing my son kept me active.  I walked my dogs, went to the park, ran around with my son, took care of our old boat, etc... Now I can't breath after standing up for more than a minute or two.  I get lightheaded and dizzy from doing the simplest task.  Sometimes just sitting up gives me chest pains as I feel my heart rate change - like I've been punched in the chest.  And my entire body now hurts.  All the time. Non- stop.  And that's how the entire year has been: pain, dizziness, fainting, thirst, and no relief.

The dizziness, dehydration, and flu like symptoms and pain started last January when I was early in pregnancy because of my POTS.  When they finally put a PICC line in they told me it wouldn't hurt.  They lied. I felt the whole thing, and it stayed painful the entire time I had it in (I think around 3-4 weeks). Not to mention the blood clots - they hurt like you would not believe. It's a deep stabbing pain with no relief. It started in my chest and arm, and then my jugular was completely clotted off, and I couldn't move my neck.  Then the pulmonary embolisms started.  All 12-15 of them.  The chest pain was unreal - stabbing, crushing, strangling feeling pain that was terrifying.  I was gasping for air and felt like I couldn't speak because it was so painful.  I later found out at Hopkins that the clot in my heart was causing "differed" pain - my upper right side of my chest was excruciating.  I could barely move or talk, and was gasping from rolling over in bed.

Then the pain from being immobile set in, on top of everything else. Most people wake up sore once in a while after being in a bed all night.  Or spend a few days in bed from the flu.  I was in bed for the entire pregnancy - from January through the end of August. I have fibromyalgia, and I usually just take ibuprofen for aches and pains, but since I was pregnant, I could not.  I was offered Morphine after the embolisms, but just stuck to Tylenol because of the baby. Tylenol sucks.  My body went from fairly fit and active, to completely atrophied and in constant pain pretty quickly. My muscles all hurt to the touch, and I was passing out so much and on blood thinners (bad combo) so I could not get up and stretch, let alone take a hot shower. So no relief.  This continues today, except I get to take ibuprofen again and warm seated in the tub water-boarding showers (hot showers/standing + POTS = passing out for me).  But my body is rebuilding all that muscle mass I lost, and I still am in bed a lot, and I am sick of waking up almost in tears because the pain is so bad.

Then my belly got big in the third trimester and the pain really took off, plus all the other fun discomforts of pregnancy. Indigestion (I have GERD and a Hiatal Hernia - and had to eat laying down), nausea, the Braxton Hicks contractions, etc etc etc...And at that point my blood pressure and heart rate were so wacky I had to lay on my left side 90% of the time, sometimes with the bed tilted to an inverted position to keep the blood in my head, so my whole left side throbbed and pulsated with pain, and eating was a real bitch. I could go on and on - but basically, it sucked.  I'm not going to even go into the whole birth experience, because it was downright traumatic.  The epidural didn't work, and it was so taxing on my body that I couldn't hold the baby until the next day.   It took me about 3 weeks to recover from the strain, and start moving again.  My Mom had to care for the baby most of those days.  And it hurt.  And now, if I sit up and do a simple task like color with my son, or fold some laundry in bed, or rock my fussy baby because I cant stand up and walk around with her - I usually have to nap afterwards because my body shuts down.  I shake, get dizzy, and have that flu like ache times ten from doing the smallest things. I have to pick and choose where to delegate my energy very carefully, or I end up in bed recovering for days.  I hate it.  I am tired and in pain all the time.  And it makes me feel like a wimp.  I survived a 10 hour insanely painful back surgery.  I survived POTS all these years. I survived the birth of my son. But this is kicking my ass, I think because of the endurance required.

2. The anxiety. This has been the most stressful year ever. Firstly, the anxiety about my health. I had unexplained terrible vertigo, seemingly unending.  My POTS was more severe than I had ever imagined it could be, and it terrified me.  I almost died (that one took the cake).  Then, they told me - and I saw the pictures - about the 2 cm clot in my right atrium of my heart. It was this lovely elongated shape, looking like it was just waiting to break off and kill me. It took over 6 months to dissolve fully. It stressed me the hell out, knowing that any chest pain I felt could be it.  They told me I'd have a few minutes of warning, then they'd have to crack my chest open or give me the insanely dangerous clot busting drugs that would also kill my baby. So yeah - it was stressful.  Then the stress of the impending birth - I was mortified of trying to birth a baby in my de-conditioned state, with my lungs not working, and my blood pressure and  heart rate so whacky.  The blood clots were an issue for birth as well, managing the blood thinners and avoiding a C-section were a must. If I couldn't get out of bed, how would I push a baby out?  STRESS!  And - the constant fear that I was harming the baby with all the tests, the medications, and the sheer state of my health caused me massive anxiety.

A few other stressful things that happened: I had to shut down my business and cancel all the weddings I had booked. I had to back off completely from the event venue/private club we were opening downtown - and that eventually fell through completely when our developer screwed us over many months later. Oh - and my dog was attacked and they thought she would die. I hadn't seen her in 4 months, and was on the phone with my husband when she was attacked, heard my son screaming, my husband telling me she was bleeding to death in his hands, and the next 4 days of waiting to see if she would live.  All knowing that if she died, I wouldn't be able to see her one last time, and hadn't hugged or petted her in months.  It was terrible, heart wrenching, and I thank God she pulled through - because I may have ended up in the psych ward if she had died.  Then we (actually my husband and son) had to move.  My poor husband had to shut down my business, sell of all my stuff, and move us to an apartment close to the hospital.  I won't go into details about the other financial stress, but anyone who has gone from two incomes to one knows how tough it is.  While dealing with medical bills, and left over bills from my business.  Frakking stress! 

3. Missing out on my son's life. This is still going on, and I struggle with it daily.  He was two, and turned three in March while I was hospitalized. Only seeing him for an hour every other day was miserable.  Feeling so sick that many days I would have to ask my husband to take him home was miserable. Some days I felt too sick to see him at all, and the guilt and pain from that was heartbreaking.  Having to put him in full time daycare for the first time was miserable.  Not kissing him goodnight or getting hugs from him was miserable. And seeing him have to cope with the situation, and distance himself from me was extra miserable.  While at Hopkins, I did not see him for a month (they had age restrictions for visitors due to flu season).  We Skyped, but it was probably the hardest issue for me to cope with - not feeling like a Momma anymore. My husband and I could talk on the phone and Skype, and we would survive, but not being with my little boy was the worst.  You never get back the early years (or any years), and I missed a lot, and he was deprived of a lot, all because of my busted body.  I still have to tell him no when he wants me to play.  Just yesterday, he was dancing to a show on Nick Kids, and asked me to come dance with him.  I'm sick of having to try and explain to a 3 year old that mommy is sick and has boo-boo's and can't.  I want to dance with my son.

4. Reading about everyone doing fun stuff on Facebook. Going out to the beach, to shows, with their kids and families, traveling, celebrating holidays, and just LIVING LIFE. It was and is rough to read.  I still get insanely jealous and upset I can't go do anything.  I want to take my kids to the park, or go see a movie with my husband, or go hear live music, or anything!  I want to be working, or in school, or traveling, snowboarding, going to coffee shops, playgroups....the list goes on and on and on. IT SUCKS.  I want to be sitting in traffic.  I want to so all the things I hear people bitching about, because it would be doing something.  People make suggestions, and I appreciate it, but unless you understand my limits, please refrain from doing so anymore.  I have to devote what little strength and energy I have right now to caring for and playing with my kids and trying to help my husband with anything I can. I get no break during the day, and taking care of my baby (which I love doing) uses up most of my energy.  If I was to spend it somewhere else, even doing something like a craft in bed, I have to sleep and recover after (believe me - I have tried).  I only do those things on the weekend when my husband is home, or if family is coming to visit and I'll have someone here 24/7 in case I crash. And I can still only tolerate a few minutes of anything at a time, I tried to sew a little pillow by hand in bed, and I could barely use my hands for days because of the pain. I have to type and be on the laptop in spurts to try not to over-do it.  So I'm a little annoyed at my body right now, because its' not working.   I want my life and old body back. 

5. Closing Bella Flora and having the Madison Loft fall apart. I spent over 5 years working my ass off to build Bella Flora - we had just had our biggest year to date in 2010, were published in magazines, doing larger events, had just re-branded everything and started a new linen line that was taking off - and had booked a bunch of weddings for 2011. We had also just moved into a new showroom and just had finished setting it up and had a big grand re-opening party.  I tried to manage things from the hospital before the almost dying thing happened, but then had to shut down for good. A few months later, my big huge event venue project came crashing down.  I was so looking forward to that - being a partner in a big project that would maybe be our big financial break, working with people I love, and owning a wedding and music venue.  How cool it would have been. We worked so hard to get it into the beginning phases, and then we got screwed by our developer.  Prior to that, I was having to face the possibility that I would have to sell off my part of the business, for no where near the amount of money I would have made long term, so my partners and the business could continue on.  It was heartbreaking. I keep using that term, heartbreaking, but it really describes the feeling the best and I don't have the energy to use a thesaurus.

6. The toll on my husband and family. I'm going to leave it mostly at that, to respect their privacy.  But I will say that my husband is worn out, and works his ass off to keep us living.  He takes care of our kids, me, our home, and works as a teacher with only a 12 minute break every day.  He comes home and does not get to rest, or relax and watch TV, or take a break.  There is always something, and by the time everything is prepared for the following day, the kids are finally asleep, and I'm squared away, he sleeps. So no fun for him either.  And I know the physical and emotional toll on my parents and his Mom (and our whole family) have been tough to say the least.

7. I have spent most of this past year alone. Alone in hospital rooms, alone during scary tests, alone at doctor visits, and alone taking care of my infant every day while my husband is gone for 10 hours.   Alone with the fear that I could pop another blood clot, have an embolism or fall, and no one would know until my husband got home.  Alone 23 hours a day for 8 months in the hospital does not do good things to your psyche.  Not to say that no one visited, my husband and son came as much as they could and I could tolerate, maybe a few hours a week.  My parents and family do not live nearby, but came as much as they were able. My Mom came for 6 weeks and stayed to help with the baby after she was born (thanks Mom!), and traded off with my Dad when she had to go home to care for my Grandmother, who shattered her ankle a week before the baby was born. Other relatives visited as much as they could, and I am grateful for that.  So I don't fault anyone for not being there, its just the nature of chronic illness I guess, especially when everyone is far away.
This is known as a very isolating illness.  But my friends didn't call very much, and even less came to visit, or do to this day.   People are busy.  They say they'll come, don't realize the effort it takes for me to get ready for this, and then cancel.  Or they forget, and don't call to finalize plans. Or I have a bad day, and don't feel well enough to see anyone, and I have to cancel, so they eventually stop offering to come. There are many times I didn't/don't feel well enough for visitors, or phone calls, or facebook/emails...but that doesn't mean I didn't appreciate the offers.  But most never even offered to visit, or called.  The isolation has been very hard for me, and the realization that some people are not really there for you when you need them.  Even if it's just leaving a message saying you're being thought of.  The people who have been around the most are more recent friends, and a few really old school ones that live far away, and actually a few people that I barely know at all, but have been kind enough to come help around the house and keep me company.  I'm not going to lie, I feel pretty freaking abandoned by friends.  They don't understand that this is my new daily state of life, and I need phone calls (even if its a message left cause I can't answer the phone), or a text, and more than just an email here or there.  Or they just really do suck and were never friends at all.
But I miss having a social life, and networking with people through my old business, and being around adults.  I love being around my baby girl all day, but I get no break either.  When I am not caring for her, or attempting to play with my son, I am sleeping.  I am online a lot when she naps, as much as I can tolerate, because that is my only connection with the outside world.  I understand most people are busy, but really - I can only handle a 15 - 30 minute visit, is that so much out of your day every once in a while?  Or a few minutes to send a message? Or a text?  Anything?  The isolation has gotten old as well. It sucks. And the fact the my disease makes it so hard for me to even get dressed, pluck my eyebrows, and feel presentable makes it even more isolating, because I am embarrassed by my new state of being.  I don't want people to see me in this condition much of the time. I know this is the wrong attitude, but its the truth. 

8. Last one: It sucks that all my future dreams and goals are in question, and probably not attainable.  Again, not the happy positive attitude I'm supposed to have, but probably the truth.  And this started almost 10 years ago when POTS first struck.  I had to leave grad school, doing what I loved doing, because I couldn't physically handle it.  I want to finish my masters in marine biology, and had every intention of getting my doctorate.  I had to stop scuba diving because of my heart situation, and now definitely can never do it again because of the embolisms. So there goes the marine biology.  I coped with this by trying something different - I started teaching science, and my disease made me have to leave that as well after less than 3 years.  The standing and stress made my symptoms horrible, I was passing out in front of my classes.  And so I tried to adapt, started my business so I could sit down if I needed, make my own hours, and be my own boss.  And now that is gone too.
I am a "go big or go home" kinda gal, and I have gone home.   I have always been a big dreamer, hard worker, and want to try everything.  The problem with this disease is that it's hard to do anything when you can't even sit up for more than a few minutes.  I spend 99% of my life reclined in some fashion these days, and it is still taxing.  I thought in the back of my head that I would have the baby, and start to feel better.  I have not started to feel better.  In fact, because I have to work so hard to care for the baby all day, and she has more needs as she gets bigger, I feel worse. And I feel mentally worse. So it sucks.  

So - that is a basic (long) summary of what sucks right now.  No pity. Don't judge. If you are going through something similar, I hope you take comfort in the fact that you are not alone, and it doesn't matter if someone else out there has it worse than you.  It still sucks for you, whatever it is.

Oh, and I changed my mind. I don't have the energy to write about all the wonderful blessings from this past year, so that will be in a future post, because there were a lot.  As my son says, "Too bad, so sad!".  Later dudes.

Claire-dizzle (I am now permanently going by my rapper name)

1 comment:

  1. Claire,

    Wow! I am going to show this to my husband and my mom because you pretty much summed up my life for the first year of my sudden onset severe POTS here. I could have written ever word of this, except the part about your kids because I don't have kids. I missed my dog when I was in the hospital - sad for me, but not the same as missing your children. And even more of a "this sounds familiar" coincidence... I was going to be a marine biologists at once point too. I majored in Earth & Space Science and Marine Science in college, but ended up doing environmental law instead. And I too cannot SCUBA because of my heart issues - even before POTS. You had a January 6th date on which your life changed forever because of POTS. My sudden onset was January 2, 2010.

    I look forward to the "I feel much better" post in the not too distant future. 2 years from my onset I am doing so much better. I hope you get to that place soon!