Thursday, September 27, 2012

Rapidly fraying rope

I am at the end of a rapidly fraying rope - it's the one that connects to my deep inner core of strength, and it's not going to hold up.

Monday was MRI day, Tuesday included rhuematologist, infusion therapy, gyn annual visit and chemo drugs. The infusion or the chemo either one would knock me on my ass for 1-2 days separately. The two together have not been treating me well. Today included work panic, primary care visit, and a new ankle brace, all while fighting the urge to throw up in a corner before finding a quiet place to lay down.

I put z to bed around 7:45, and he went down easily, except his reactive airway cough started acting up. Two coughs, 10-15 seconds, 2 coughs, lather, rinse, repeat. I woke him up to give him an albuterol inhaler, which made him very upset. We lay him back down and gave it an hour, no change. SO we got dressed and went to children's hospital.

It's not asthma, his lungs are totally clear and his pulse oxygen levels are strong. He's just.... Coughing. We're under instructions to give him two puffs of inhaler every 4 hours for the next 24 hours. Gotta stay awake until 2 to give him that dose. And here's pro tip #3, it is impossible to give a child an inhaled medication without waking the child.

I want my boy to be feeling better, number one priority. But I sure would like to have the luxury of taking the kind of care of myself that I need to shake the treatment hangover.

- Posted using BlogPress from my iPad. Fueled by coffee.

Tuesday, September 25, 2012

Contraindications land.

** Post cleaned up a bit, it was written while heavily medicated. **

To my male readers - girl troubles discussed.  Feel free to skip this one.

I have a variety of health challenges. I much prefer this phrase to a have a lot of health issues.

I have psoriatic arthritis
Irregular/heavy/painful menses
A slowly healing broken ankle

Days like today frustrate and exhaust me. The treatments seem counterproductive to each other, and I'm certain the doctors are not talking to each other. I'm a PERSON with a life, not a medical record number. I need to get that through to them. While the treatment plan may sound like a fine medical experiment, I've got someone depending in me to make the right, semi-informed choices so I can take care of him.

And they're all interrelated and co-depend at on each other. For example, I went to my primary care last week to find out why a 12 week old ankle injury still hurts like it just happened. He sent me off for an MRI, which showed multiple fractures in various stages of healing, repetitive tendon injury and swelling. I already knew all of those things. I also known theirs not much we can do except put the time into letting that heal. (I am also thankful the answer is not "reconstructive surgery".)

Today at the rheumatologist, she reminded me that the primary drug, Remicade, is a TNF blocker and will slow healing, coupled with weekly self administered of methotrexate (a chemo drug used to severely suppress your immune system so other medication can work more effectively) which puts my immune system into a state of remission, so it can't speed up healing. She renewed my prescription of prednisone for swelling and pain and also reminded me that methotrexate can cause out-of-cycle sloughing of the uterine lining, so I may see some break through bleeding. She was adamant. Prednisone for swelling and pain, methotrexate weekly.  Both of those drugs will impact the problems with my menstrual cycle.

I them went for my Remicade infusion, which is coupled with a beautiful 50 mg dose of Benadryl right onto a very effective port-a-Cath, which runs the line into my brachial artery on the left side of the chest. I never count backwards from 20 any lower than 12 before I go sleepy. Today I had my eyes closed at 14.

Between the Remicade infusion and GYN appointment, I went to sleep in my car for an hour. It was warm and cozy, but I couldn't really get to sleep because the wheezing and coughing had started.  My most common side effect from Remicade is a wheezing cough that often times deepens into bronchitis. Tomorrow I check in wih my primary care to find out if my swollen lymph nodes and painful ears are just an infection, and to start monitoring the cough.

The next appointment today was with the GYN. I've been bleeding non-stop since May, with VERY heavy "normal periods" (Normal in the fact that the bad weks are once every 28 days).  Back in May, I discovered my IUD had moved and was in the wrong spot, which started the non-stop bleeding.  That IUD was replaced with a different brand, and it's just been getting worse.  Two periods ago landed me in the emergency room because the heaviness of bleeding and severeness of cramps made me thing I was having a miscarriage. I wasn't,  It was just a side effect from the non-hormonal type IUD that she inserted after having two previous failures with the preferred brand.   Talking with her about other meds, she was adamant "no methotrexate! No prednisone!" We scheduled for a mammogram and switching back to the mirena IUD for ONE LAST CHANCE. If this doesn't work, we explore surgical options. Her confidence is higher than mine. This will be my 4th IUD insertion in less than a year. Maybe I'm just built funny in there.  We also talked about birth control methods - my goals are pretty simple.  1) If I bleed at all, I'd like to have normal 3-5 day periods on a 28 day cycle 2) I do not want to have any more kids.

I also suggested that rheumatologist and gyn get together and talk out a plan for me. It's exactly the reason why I'm in a multiple-speciality, one chart system. Hell, they could invite the hematologist that is following me for anemia (iron) and pernicious anemia (vitamin D) and my primary care, just to make a party out of the whole thing.  I'd bring the cookies!

I realized a long time ago, I am my only advocate, medically. But in a world where I'm living with chronic pain and a debilitating disease that is sucking away my ability to pay attention sometimes, it sure would be nice to think someone has my back.

- Posted using BlogPress from my iPad. Fueled by coffee

Sunday, September 23, 2012

Parenting Pro tip #2

Not to toot my own horn, but I figure I have to have said at least one insightful thing about parenting at this point. I'll be damned if I can tell you what that ONE THING is, but I believe it's out there.

Tonight, I'm going to share pro tip #2. This falls firmly in the category of laundry - it's not just for moms! Dads can do laundry, too! Are you ready for it?

When you take something out of the dryer, fold it and put it in a place where it will get put away in a timely manner. This might be in a laundry basket, on the bed, or even neatly stacked on the dryer to be carried upstairs the next time you go. Laundry takes a lot less time when you don't let the half-ass attempts pile up to the point of being a fucking disaster.

You will thank me for this, for a couple reasons. 1) nobody likes doing laundry. Showing that you're not just paying lip service to "helping around the house" by actually FINISHING a chore goes a long ways. 2) you will likely not find your wife dead on the laundry room floor, where her brain exploded from a aneurism that could not take the sudden blood pressure spike when she realizes that even though it was your morning to take care of the squid, she BELIEVED YOU when you said you had some stuff to do around the house, like laundry, so couldn't SHE just take the baby with her to the grocery store, violating the only consistent me-time she's had in the last 22 months. (Pro-tip #3: doing the household grocery shopping while the baby (and you) naps is not "me-time" for mommy. You are not fooling anyone, you selfish wanker.)

Three loads of laundry picked up off the floor, folded and put away. Another load done, folded and put away, with one more neatly stacked for morning. An essential load in the dryer (loveys, blankets and clothes for the week at daycare) to fold in the morning, with a load of towels washing away, and one more in the queue just waiting to be finished. Who knows how may additional pro-tips about parenting I'll come up with while faced with the drudgery.

- Posted using BlogPress from my iPad. Fueled by coffee.

Wednesday, September 19, 2012

Happy Anniversary

Today is my third anniversary of being married. The requisite roses arrived at work, in my favorite color, and the appropriately romantic cards were exchanged, but it doesn't change the fact that I'm spending the night alone with my son, and I'm not particularly happy about it.

I try very hard to be the sort of equal partner in this relationship that doesn't play tit for tat on having time to yourself. I can think of 2 times where I've said "I'd really rather you don't go out on this night." in a total of 8 years together. I don't crash the boys nights out. When I ask to do things on my own, hubby rarely says no, but he makes the experience of me being away and him being in charge so nerve-wracking that it's often easier to just not try.

For the most part, my "me-time" is accomplished by taking time away from work to do things, like get my hair done or have a manicure. It also includes a day every 5 weeks sedated while I get IV medication to try and control the arthritis. I've booked myself for 3 cooking classes, one each month for the coming three months, 2 hours away from the house during prime-time play time. The other option is that I wait until I've "done my chores" at the house, and got the boy to bed before I go out to meet another mom or two for a drink.

When I make plans for myself, I think it all through, I look at the calendar, I look at how long it's been since the last time I had a night out, and then I ask. "Sweetie, how would you feel about me going to a barbershop chorus guest night next Monday for a few hours?" Or "the community building meeting for our daycare is meeting next Wednesday, can you feed Z and get him down to bed?" I don't assume the answer will be yes.

When my hubby wants to make plans for himself, he send a calendar invite on iCloud. No could you? No would you mind? It's just a statement of what he's doing and I can figure out the details.

Last week on Monday, I got an appointment demand for Tuesday night out drinking with the guys, Wednesday night gaming and another one for the 19th gaming. Now, i checked. Our wedding anniversary is on the shared calendar, right there on the 19th, right where it's supposed to be.

Over dinner he starts talking about how they finally got that second game scheduled, and about how he's looking forward to playing this game with the guys. I told him, "listen, I need to talk to you about that. I'm pretty hurt that you would schedule something like this, something you do alone, on our wedding anniversary."

"Oh shit, yeah, I forgot about that. I know it's some time in September. So are you saying I shouldn't game? It took forever to get this on everyone's calendar..."

A giant part of me wanted to say "that is exactly what I'm saying, thank you very much.", but instead I said "it's ok, we can do something for our anniversary on Friday instead." And pretended like it was no big deal.

Last week, I decided to treat myself, and I put an emergency call into our sitter. "It doesn't matter if it's Tuesday or Wednesday, I just need you to take Z for a few hours. I need a break," I told her. She proposed Tuesday, and I reached out to a friend to see if she could get together last minute. We had a fine dinner, and I drank off some of my resentment, while we talked about how relationships are the hardest work you will ever have to do. It just pisses me off that I accommodate me-time mandate after me-time mandate, while I dance around, asking permission and eventually paying someone to take care of my son.

For my anniversary, I celebrated with my son at Red Robin. We sang "Ram-Sam-Sam" and "Goin to Boston" and a silly song that includes the words "ding dong ding dong", which he pronounces "Ning Nong, Ning, nong". We looked at the sky and talked about how the stars are always there, it's just sometimes the light makes it too bright to see them. Then we went inside, read "Guess How Much I Love You?", turned on the star projection turtle and looked at the green moon on the ceiling. I sang him the song I made up for him about how much the stars and moon love him, and he nodded off to sleep with only one "mama, mo meewk, pweeeease" (mama more milk, please) request.

Also, for my anniversary, I did not empty the dishwasher, I did not fold, wash or dry any laundry, I did not unpack the box of amazon mom delivery items (diapers, wipes, diaper genie refills). Instead I upgraded the OS on my phone and iPad, and played with new features and went to bed early. I hope to be asleep and sprawled in the middle of the bed before my hubby gets home.

I'm looking forward to a night out with him on Friday, but I sure wish there was an "I'm sorry, I'll cancel my thing" as part of the conversation that lead up to this new plan.

- Posted using BlogPress from my iPad. Fueled by coffee.

The Broken Parts

I've alluded to this a couple of times, but I do my best writing, which is to say my most consistent frequency of writing, when I'm involved in a group setting, with writing prompts and assignments and the knowledge that for this period of time, there are at least 10 people reading, because that's part of their assignment and commitment to the class.  Today is the first day of the new session.

I'm holding down a table at "Conference Room U", the coffee shop across the street from the office, enjoying what is, in my opinion, the best latte in town with my laptop and 55 minutes to be no one other than "The Writer".  "The Producer" can wait until after this block of time.  "The Mommy" can wait a few hours.  For now, I will be the one that writes.

Today's prompt, from Mark Nepo's Facing the Lion, Being the Lion:
"It is important to realize that Ganesh is a god of embodied wisdom who knows the life obstacles of which he is a guardian. He is a god because he has lived through all the world has to offer, not because he transcends it. Often, he holds in his right hand one of his own tusks, which he broke off in a fit of anger and hurled at the moon. But the moon spit it back, and he carries that broken piece of himself as a reminder of the earthly journey that no one can escape."

Start us off easy, why don't you, Nerissa?!?!?  Good lord, I need to be "the writer" AND "face the broken parts"?!?!?

Me and Paul, 2005

A friend of mine took his own life a few weeks ago.  It absolutely devastated me.  We had worked together, and became incredibly close.  We shared the same birthday, we always stood up for each other.  He was my sounding board when things got rough, and I was the same for him.  He loved my little boy, and often referred to him as "the spud".  He believed in me, and I believed in him, despite what other people said.  He lived his life in a bit of a spotlight.  If you did a web search for that public person, you'd see a lot of words to describe him: Hot-headed, outspoken, substance abuse problems, wildly talented, womanizing, misogynistic and I think there was a certain part of him that was so used to those descriptions that he let himself be that person.  I also think there were demons inside him that drove him to not trust in the good parts, and that let his amazing heart, loyalty to friends, sense of humor, and talent be pushed down into the darkness.  And the darkness lied to him, and convinced him that there was no place in the world for him, and now he's gone.

I've been trying to make sense of it, talking to mutual friends, and trying to reconcile the person that I spoke with a few days before he died with someone so desperate to end the pain that he hung himself to find some peace.

In talking with one friend, the subject of the public mask came up.  We talked about how our friend was not really all those things that the Internet says, at least, not inside. But the mask was more comfortable and easier to maintain than it was to let the pain show.  This mutual friend told me "But, then, you know more about living behind a mask than most."

I had to let that sink in, I had to let it roll around in my head and in my heart for a little while before I could accept that he was absolutely right.  I have masks for different occasions, because the person underneath is hurting and raw and far too tender to trust the general populous to treat me kindly.  In an argument a few weeks ago, my husband snarled something about me being "little miss can-do, who never says what she really feels".

It's hard work, being broken.  We all have our personal tusks that we carry in our right hands.  I think the trick is being able to lay it down long enough to hold the ones who love us close and to let that love encompass and balm the hurting spots.

It's no small secret that the Nields music has been the soundtrack to my life, since I first started listening in 1996.  At least once a day, I sing a little bit of one of their songs, as an example of what I'm feeling at that moment.  I've loved each album for it's own reasons, but "The Full Catastrophe" has taken it to a new level for me.  "Your House Is Strong" has become my anthem.  I sing it to my son, I reassure myself with it.

"Our house is strong, and so are you
It's the broken parts that let the light shine through".

I don't know if what's broken can be fixed.  But I believe I can be strong and honest and true, and I want to be the sort of person that will not make excuses for the pain and the darkness.  It is a part of me, a part of this journey, the challenge is in letting my true face show.

Tuesday, September 18, 2012

Last season, on "Still an Adult".....

It's been far too long since the last post.  I could give 100 reasons why, and they'd all boil down to the same basic excuse.  I haven't made the time for it and I've been struggling in pretty much every area of my life.

Since 'last season', I:
  • Fractured my left ankle. Again.  While breaking my ankle, I also ripped a tendon away from the attach point and am waiting for scheduling of an MRI to figure out exactly how bad the damage seems to be.  This was 10 weeks ago and it's still unstable and painful daily.
  • Sprained my right ankle.  Again.  I ended up just sitting down and crying for a while after that one.
  • Survived a round of huge layoffs at work.  Scope of work has changed drastically, and there is a general sense of jumpiness around the building - we all seem to be waiting for the other shoe to fall.
  • Lost a very dear friend to suicide.  Depression is a horrible, LYING disease that allows our personal demons to get the best of us.  I miss him, every day.
  • Had what was probably the best series of time with my Dad that I can remember in my adult life.  Kids don't fix things, but having a common interest that is a constant source of amusement is a pretty great equalizer.
  • Had my uterus try to kill me, twice.  Popular medical opinion seems to be a combination of cysts, early menopause, and possibly the replacement IUD.  Two months ago, I landed in the ER, thinking I was having a miscarriage because of the amount of bleeding and pain.  GYN appointment next week where we "discuss options".  In the meantime, I'm seriously anemic and running on fumes.
  • Realized that marriage is hard fucking work. (I knew this already).  Hubby and I have been at each other's throats constantly; arguing, resentful, frustrated and just not communicating.  There are days where I refuse to give up, because, well, I refuse to give up.  And then there are the days where I seriously question what I'm trying to save.
  • My son is the most amazing person I've ever met.  He's learning new words every day, and has SUCH a personality.  It is an honor to be sharing his life.
  • I lost my mind a little and had my hair highlighted with pink and purple.  Atomic pink and Pimpin' Purple, to be exact.
  • I reluctantly agreed to speak on a panel at a "women in games" focused industry event.  It went a lot better than I'd anticipated, and I didn't throw up before speaking.  Win!

I keep asking myself the same question - "Why do I write? What do I hope to achieve?" and the answer is always the same.  I'm lonely.  I'm hungry to have a voice that is heard outside of singing the ABC's to my son.  I want to have a tribe.  I want to have a conversation.  But the responsibility for STARTING the conversation falls on me.  I've decided to expand the distribution of new post notification to a wider (but controlled) audience.  I nominally keep this blog anonymous, as I don't want to turn up on search results talking about things like work, abuse, frustration, or depression.

Thanks for reading, and welcome to the "new season", which is a new commitment for more frequent posts and honest conversations with myself, and hopefully with you, as well.