You are here: Home / 2011 / Archives for October 2011

The NeverEnding Battle for Belly Laughs

October 25, 2011 by 12 Comments

There are things that happen in a family when someone is sick. Good and bad. A lot of stuff that I just can’t write about all the time, or we’d all just be depressed 24/7. It’s not that I don’t want to get it all out…believe me, I do. But there is a part of me that wants to spare you the whining. Because it does feel like whining sometimes.

What people do not understand about a chronic illness like Lupus is that the treatment, and medication, and most importantly that the illness is chronic.

Hear me out.

It never ends.

It just keeps going. And going. And going.

I see the doctor for an office visit. I see the doctor for a 7 hour treatment. Another 7 hour treatment. Another 7 hour treatment. Then a 2.5 hour treatment the next day. Then a half an hour treatment once a week. Oh, and every two weeks I see my pain management doctor who tries to keep all the pain for all of the above under control so I don’t have to be in the hospital for pain management. Then an x-ray. Then an MRI. Then I see my regular doctor to update him. Then I see my OBGYN to update her. Then I do another round of all those treatments up there. Then another office visit. Then the neurologist. And he orders some tests. So we get those tests done and then it’s time again for all those treatments up there and visits and ….do you get the idea here?

It never ends. On average I see a doctor 3 out of 5 days per week. Most of those days include needles. And it’s exhausting.

But understand it’s NOT exhausting for me all the time, it’s exhausting for everyone who loves me.

Why?

Some days the news is good. Some days it’s iffy. Some days the news is crappy. Some nights Aaron drives me to the ER and they always offer to keep me. Sometimes I have them keep me and I have to stay a few days. Sometimes I just come home and do the best I can.

It’s not that we’re not thankful that I am better overall, it’s just that this isn’t like a cancer or some illness where you fight it and fight it and either you beat it or you die. It’s not like that. I have to fight and fight and fight and fight and fight and fight and fight and fight and the fight just keeps going. And it doesn’t seem to matter how hard I fight or how hard my family hopes and wishes or how hard we all work together…

It just NEVER FUCKING ENDS.

It doesn’t stop. The appointments. The treatments. The need for help. The need for hope. The need for NEED.

And some days it’s just hard to wake up and do it all over again.

Believe me. I’ve learned a lot since this all started over a year ago. Almost two years now.

I’ve learned how to swallow my pride and say ‘yes’ to help. I’ve learned that I can not fix everything. I have learned that I am not in control. I have learned that I still screw up a lot. I have learned that my children are more resilient than I ever imagined. I have learned that my husband is stronger than I ever knew. And I have learned that some friends will surprise you in the best and worst of ways. I have learned that love does make it all better and helps me fight harder, but I have also learned that I can’t make it all better just by loving back. Love doesn’t cure Lupus either, but it sure is powerful against it.

I have also learned that I do not know how to handle this on going shit storm that just does not stop. I have to plan again for treatment that starts on the 7th. Right after speaking on the 4th at Blog World Expo– provided I am strong enough…which I should be since the only travel involved is getting in a car and going downtown.

Maybe this is the story I need to tell more often when people ask me about having Lupus. Maybe I need to explain more about this being one hell of a long marathon. And how it’s hard to ask people to hang on just a bit longer for me to get better, to please just help me ride this out, to please, please just understand that I too wish I could attend/workat/cometo/beinvolvedwith/helpoutat/domorethan/be/do/fillintheblank thing you are asking me to do.

I don’t want to go to bed early. I don’t want to take naps. I don’t want to say ‘no’ and I sure as hell don’t want to have to be left out of that whatever for the 20th time because no, I’m STILL not well enough.

So before you go feeling sorry for me, or annoyed with me for bitching, know that – overall – I am improved. It’s just slow. So slow that it’s nearly killing me slow. Ok that’s not literal but you get the idea.

Aaron and I just need an extra push to get us over this hump so we can battle this for a bit longer. We still have a ways to go before I can declare anything normal around here and before I can finally feel like I contribute to the house, work, life, etc.

I can do much more now than I could before. I’m not losing organs. I’m not in the hospital. That’s all good. But the treatments are never-ending. The doctor is stuck to me like glue right now, his choice, because I need to be ‘watched closely’ right now. And I’m just afraid that we’re worn down here a bit too much.

Nothing helps more than having those moments where the four of us are laughing and playing. Nothing helps more than being able to see relief in their faces and when that’s not possible, to at least see joy. Tickle fights need to happen more often. Maybe we need to have a live version of Angry Birds and toss some stuffed birds and pigs around the house. Maybe we need to make a batch of my Dad’s special ‘cider’ and take the kids trick-or-treating with friends and just talk and laugh. Yes, there will be me in a wheelchair as the constant reminder but hey, that means I can hold more cider and candy.

photo.JPG

Silver linings. I will be pushing more and more of them as we keep pushing on and on and on. Because Lupus = chronic and this is a long fight. A long, long fight. And just when I think I don’t have anymore in me I hear from a small voice upstairs how if Mom were a stuffed animal we’d name her Squishy because she’s the squishiest. If Dad were a stuffed animal he’d be ‘PG’ for ‘Party Guy’ ’cause he’s the most fun. And I laugh to myself and shake my head at the crazy things the kids come up with and realize that during all of this, in order to get through, we need to get a little crazy too.

Silly.

Crazy.

It works. It makes us laugh and the more we laugh, the better. And we could really use some laughter right now. Mom and Dad are tired. Battle worn and weary and in need of some belly laughs.

And I refuse to let Lupus take those away.

Ever.

Filed Under: #SUCKITLupus

Stylin’

October 18, 2011 by 11 Comments

I think it lasted a year. Maybe two. In that time before they really could walk or talk and I had control.

Who am I kidding…even then I didn’t have control.

But I was able to dress them up in whatever I saw fit. My dream of frilly girl dresses and hockey jerseys lasted for such a short period of time that I’m not even sure many photos exist.

What I do know, is that my husband and I made a point to encourage our children’s individuality. Their creativity, and their own sense of self. That means that now, when picture day at school rolls around, I ask them what they want to wear and they choose. I don’t even try to sway them to the dress I would pick out, or the shirt I would prefer. This isn’t about me, and it never has been.

And I couldn’t be more proud of the independent, amazing, and totally stylish in their own quirky way kids we’re raising.

This is how @aaronvest and I's children dressed themselves for picture day ...hee hee hee

Rock on.

Filed Under: By Order of the Charter, Count Waffles, Feeling YaYa, Princess Peanut, Stepford Crazies

99% Has Heart…While the 53% Yells ‘ANDY YOU GOONIE!’

October 12, 2011 by 10 Comments

I just do not understand.

If protesters are mad at the government, they are called ‘patriots’ – yet if protesters are mad at Wall Street they are called ‘whiners.’

If people express their fears and doubt and anger over their debt, and lack of employment, and inability to survive in this economy they are mocked by conservatives and made fun of by pundits and bloggers and citizens acting as though they are so much better off.

As it turns out, they aren’t better off, they just feel no need to express their frustration with their situation. Good for them. Way to keep it in. Way to suck it up and take your economic beating in silence. I’m so very glad our country allows us all to voice our opinions in our own way.

But what I can’t take, as I watch protester after protester spill their hearts and lives onto the internet, or a written page, or a video, or to a member of the media…is the snickering and laughter and childish behavior from some conservatives who, apparently, find people’s hard times funny.

Aren’t these the same people who mocked liberals for being educated? Calling us ‘elitists’ and ‘latte sipping snobs?’ And here they are, pointing and laughing again like schoolyard bullies.

Grown men and women on blogs, Fox News, CNN, MSNBC, CBS, NBC, ABC and local news actually giggling and rolling their eyes at homeless veterans, college students strapped with debt, homeowners underwater, cancer patients without health care, and senior citizens working well into their 80’s in order to afford food.

You do not have to agree with Occupy Wall Street. You do not have to support unions, or Democrats, or raising the tax rates on the wealthiest Americans to the rates of President Reagan…but you should, at the very least, respect your fellow Americans as they suffer.

I have never been more ashamed of my fellow countrymen and women than I am right now. I have never been more disgusted with the state of politics in our great nation than I am right now. And that’s saying something.

Just keep in mind the more you laugh, the harder I will fight to re-elect President Obama. The more you mock, the harder I will work to make sure programs like Welfare  and Social Security and Medicare and Medicaid will remain and thrive. And the more you name call (‘whiners’ ‘losers’ ‘hippies’ ‘bums’ ‘lazy’) the more I will make sure the 99% is louder, stronger, better educated, and given a bigger platform to make their point and to make a difference.

Contrary to what you might think, no one is looking for a hand out, or to take your hard earned money. We want to work hard all on our own, but we also want to make sure those who can’t work are taken care of too. Those who need help, GET IT and those who are suffering receive some relief.

I have had enough of your snark and your laughter, be a real American and pitch in. Your country needs you and it’s time to either stand up and help, or sit on the sidelines and mock those less fortunate.  So far all I have seen is your ability to mock…but the last I checked, snark didn’t solve an economic crisis. Pointing and laughing at the poor kid didn’t feed him or his sister. And your frat-boy behavior certainly didn’t change the old boy’s club where the rich got richer and the poor got poorer.

Unfortunately this isn’t a John Hughes film where the douchebag rich kid got punched in the nose and the nerd rides off into the sunset with the girl. It’s real life where most of us are one medical disaster, one big accident, one layoff, or one paycheck away from disaster.

So what’s it going to be? Are you going to attempt to listen to the 99% with compassion and offer solutions and ideas and open arms…or are you going to pop the collar on your iZod, punch your buddy in the arm while you snidely laugh at those ‘bums’ who should just ‘get a job’ while you ride off in your red convertible?

I could tell you how the story usually ends, but I get the feeling you already know. Let’s just hope that just this once, Hollywood and real life actually turn out that happy ending.

Filed Under: #suckit

Relief

October 7, 2011 by 23 Comments

I sobbed on my husband’s shoulder begging for relief…

when. when will we catch a break? it all has to stop. it just has to stop. now. i can’t take this any more. it’s not fair. when will it stop?

It may have been one of my worst moments dealing with the news that one of my most beloved Aunts has been moved to hospice and it’s only a matter of time.

Hala and Aunt Georgiann

I got the kids to school and went immediately to see my doctor and was told I am not healthy enough to travel. So when the time comes, I can’t be there. I can’t be with my family who needs me and I can’t say good bye. I can’t read at her funeral like she read at my wedding and I am so very tired of all the ‘can’ts’ in my life.

I have spent 48 hours keeping myself in check while the kids are looking, so I don’t scare them anymore with my tears. I have told them and my husband and my brother and my cousins just how much I love them over and over because I am so very tired of losing people that mean so very much and I refuse the miss out on letting those I love KNOW that I love them.

I have thought about how to best pay my respects to my Aunt who did nothing but give herself, her life, to everyone else. She was there for me always. She was my sponsor for my confirmation. She never missed a birthday or a holiday or any of my surgeries with a card or a pair of pjs or even some flowers. We had this love of sunflowers together. And we’d send them to each other whenever we could.

When the time comes I am in charge of making sure there are sunflowers at her funeral. From me. It’s a task I dread and yet will do with love. For her. Because it’s all I can do.

My kids didn’t get nearly enough time with her. They knew she always sent ornaments at Christmas and gifts for their birthdays. They remember the summer in Michigan fishing off the docks. They know her from our wedding photos, and how she was so nervous reading Elizabeth Barrett Browning for me. But she did it, for me.

My other Aunt held the cell phone to her ear for me the other night and I rambled off as much as I could when you only have a few moments to say everything you’d like to say over a lifetime. I told her I loved her. But I also begged her to fight. And then I eventually told her I would see her soon.

I couldn’t bring myself to say goodbye.

For as long as I can remember she was one of the remaining relatives who went to Mass every Sunday. So I did the only thing I knew to do and packed up the kids and headed to our local church to light a candle for her. And the doors were locked. The church doors were locked.

I was so angry the doors of a church were locked when I needed to light that candle. I had to light that candle. Didn’t they know my Aunt was dying? Didn’t they understand that lighting a candle was all I could do? Who locks church doors? Shouldn’t they be open so people can pray whenever they need to pray? Or light a candle to Mary or any other Saint they choose?

I can’t believe that not only am I unable to get on a plane to be with my family in Detroit, but I can’t even manage to light a candle. Failure thy name is Erin.

Just this once, I am asking the universe for a break. Let her pass without suffering. Let her be at peace. And please let my family be comforted. She was a selfless woman, who deserves that much. And my family has been through enough.

I love you Aunt Georgiann.

Filed Under: #suckit, #SUCKITLupus, Feeling YaYa, Holding Court, Queenie Backup, Royal Kinfolk, Stepford Crazies

Stuck Like Glue

October 3, 2011 by 6 Comments

Hala and I share our 'keys' .. worn around our necks for tough days when we need each other

I get it.

I understand it completely.

Some days I just need my kids.

Some days I just need my husband.

Most days I need all of them, within touching distance. I need them near and I need to know they are ok. But even more importantly, I want them to know I am ok.

It is important for all of us to know that everyone in the family is present and accounted for, and ok. Some days we just need to be close.

Treatment weeks are the worst. The kids are on edge. My husband is on edge. I am exhausted and worried about those I love.

We’ve tried a lot of different things to help everyone feel better when we are apart from each other for ‘scary’ doctor appointments or tests or treatment. We’ve tried secret handshakes, secret words, stuffed toys to pack in backpacks, notes in lunch boxes…you name it. But nothing has really stuck. This means that while I’m sitting with an iv in my arm the kids are usually at school, worried and upset. It makes learning hard, and it disrupts their thought process. It makes treatment hard, as I sit for hours on end with nothing to do but…well…sit. So I think and worry and worry and think and it’s all I can do to NOT call school 500 time asking how they are.

I’m not really sure what happened, but this week was harder than usual. Lots of tears. Lots of clingy drop-offs. And LOTS of nights with kids cuddled as tightly and closely as humanly possible in our king-sized bed.

Imagine if you will a very big bed, with four people and a dog all squeezed as close to each other as comfortable. And in many cases, even as close as might be uncomfortable. But that ‘stuck like glue’ feeling is where everyone breathes deeply and calmly. Our hearts finally slow a bit and tears dry and there seems to be some peace.

During one of these moments, my daughter told me she felt like she was inside my heart. My son has said something similar…something about wanting to get inside me so he could hear it pumping even MORE loudly so he could go to sleep easier. Once my daughter also told me that she thought only Mommy got to have Daddy’s heart, and she was relieved to know that she too held a special place inside her Dad’s heart.

And from somewhere in that pile of arms and legs and hugs and kisses, the ‘key’ to our heart(s) was born. Something we all could carry around, or wear, on tough days. Something to remind us that we’re never alone, and there are always three more in the family willing to make you laugh after never-ending treatment, willing to cuddle you after a long school day, or willing to just listen to all your worries.

This weekend at Disneyland my daughter and I saw some silver keys behind a case. Something lit up inside her, and she smiled and said ‘like the keys to our hearts Mommy’- and I knew what she meant…exactly what she meant. Of course she still doesn’t get the concept entirely, declaring that the middle of our living room also holds the family ‘heart’ – but generally she knows what it means.

We’re wearing our keys around our necks now…the girls are, anyway. The boys haven’t figured out exactly what they will do with theirs yet, but it may just stay in concept form to them-which is totally fine. What is important is we all know we’re together in this. We have each other. And we always hold the key to each other’s hearts…keeping us close, grounded and getting us through the tougher days the only way we know how-as a family.

Filed Under: #SUCKITLupus, Stepford Crazies