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.

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.

It Takes a Village.....

I've always loved the proverb, "It takes a whole village to raise a child", even before I became a mother.  I think it's actually bigger than that, we all need our villages to keep us sane and happy.  This life is too much to try and tackle on our own.

My personal village includes hairstylist, aesthetician, manicurist, massage therapist, accupuncturist, doctor, and best friend.  I reserve the right to add or subtract when it gets particularly busy in my head.  Just the other day, I mentioned that I'd like to get in contact with my post-partum doula to see if she could come over and hold me while I nap.  A job description like "Mothering the mother" doesn't end just because the baby is a year old, does it?  Based on the way BabyBoy throws himself into sleep with reckless abandon when I'm holding him, it seems like a great way to nap.  First we need a giant rocking chair....

I've started having migraines again, something I really do not want to revisit, but they're back.  I'd like to blame it all on methotrexate, but I know insomnia and stress both contribute, as well as a family and personal history of migraines.  A couple weeks ago, I got about 30 minutes of an aural migraine where my vision was blurring out in little c-shaped chunks before the beast got it's claws in my skull.  I put in an SOS call to my doctor, and called my accupuncturist to beg for a spot.  An hour in a quiet, dark room with specific needle therapy, as well as picking up a prescription for Imitrex got it under control, but I've been on the cusp at least two additional times in the past three weeks.

Yesterday was one of those cusp days.  I ended up cancelling out of afternoon meetings and just going home to take a bath.  It was GLORIOUS.  I sat in a hot bathtub, with bubbly, good smelling lush products in the water until my fingers went pruney.  I drained off the cooling water and refilled it with hot two seperate times, and I read a book in a totally silent house. 

I've come to a realization recently, partially of my own accord, partially from reading a blog post from one of my favorites, and partially at the request/nudging of my best friend.  I really need to find a therapist to talk to.  There's too much going on in my head and in my life, and I hear things through my own filter, which spirals into familiar internal conversations that poison me.  It's time for me to face this and to start to heal, and if I can't do it for myself, I need to do it for the people who depend on me.  I need to do it for my son, my husband and my best friend. 

And I don't know whether
I believe in me
But I still believe in my friends

by David Nields & Nerissa Nields
© 1999, Ambivalent Fins and Peter Quince Productions (ASCAP)

It scares me, my past experiences with therapy have been not-so-great.  From the psychiatrist who had me drugged so heavily that I was completely numb (but, man, I really miss the valium some days) to the psychologist that spent so much time trying to get me to dig through my past that I couldn't find a future, it's never really been an enjoyable experience.  I have a referral from a friend, but that thearpist has a policy in her practice to not see clients that have external relationships.  She gave me the number of a couple other therapists in the area, and I also got a referral from another source.  The thing I have to keep in mind is that I GET TO INTERVIEW these people.  I'm the only one who knows what I need, and how I'm comfortable working, so if it's not a good fit, that's ok!  It's also ok for me to set guidelines about frequency and time of day.  It's hard work, and I need to keep the rest of my life in mind while starting this. 

Being outside your comfort zone is where the magic happens, right?

The source of my pain

I had a doctor's appointment today - with a podiatrist. I wanted to talk about sharp electrical shock pains when any pressure is put on the tops of my feet, and about heel pain on my right foot. I also wanted an assessment on the bunion that's progressing rapidly from a bump on my foot and into deformed foot land.

I recently had to change all my doctors because of change in health insurance (please do NOT get me started on this. It angers me to no end that the last 2 years of building a relationship with a medical staff has been flushed down the toilet because I changed jobs.). One of the things that is incredibly important to me was that I was being seen in a "one chart" clinic. I'm already coordinating care across several specialists to deal with a variety of issues, I at least need to make sure chart notes and lab tests are shared with no effort on my part.

Currently, I'm under the care of a primary care for general health and medication monitoring for depression and anxiety, a rheumatologist (Psoriatic arthritis), hematologist (pernicious anemia, iron-based anemia and assorted other malsorption issues - vitamin d, selenium and folic acid to name a few.), gastroenterologist (gastric polyps) and now a podiatrist. I get IV infusions of a TNF blocker (immuno-suppressent therapy) for psoriatic arthritis via a portacath in my chest every 8 weeks. I self inject methotrexate (a chemo drug, which also suppresses the immune system and reduces swelling) weekly. I get IV infusions of elemental iron twice a year, (which is an improvement over just ferritin infusions every 8 weeks) to keep from being dangerously anemic, coupled with a corticosteroid and benadryl so I don't have a reaction and go into cardiac arrest during the administratoin. I self inject complex B vitamins every month to keep the pernicious anemia at bay. I have comprehensive blood work drawn, again through the portacath in my chest, to make sure the arthritis treatment is not causing liver damage. I require endoscopies twice a year to make sure polyps aren't changing in size and that no malignancies have developed. I take 1200 mg of folic acid daily to make sure the methotrexate doesn't cause the inside of my mouth and tongue to be covered in ulcerated blisters. I take 50,000 IU of vitamin D3 weekly just to maintain status quo inside my body. I am not an easy case, and I am not a single sentence diagnosis. When I went to the podiatrist in this one-chart world, I expected him to be able to make an assessment with total care in mind, and to be able to recommend treatment.

He asked some questions, examined my feet, and said "The source of your pain is inflammation."

I grew up with brothers and a sister that are substantially older than me, so I learned lots of colorful swear phrases much earlier than the average kid. I can remember being in 2nd grade and when a teacher said something that seemed obvious to me, I replied "No shit, Sherlock", one of those charming phrases that my 13 year old brother taught me. (I also spent a week in detention and caught one hell of a whipping from my Mom for sassing a teacher.)

"No shit, Sherlock" was the first thing that came to mind when he announced "The source of your pain is inflammation." When the arthritis flares up, my fingers and toes swell up like sausages. There are days where I cannot put the screw on tops and bottoms of BabyBoy's bottles together because the pain in my hands and wrists won't let me do these simple tasks. I wear compression socks like an old diabetic man to try and keep the ankle swelling down at least two weeks out of every month. I ice, I keep gluten to a minimum in my diet, I keep sodium to a minimum in my diet. I let the doctor stick needles into my joints and give me cortisone shots WITHOUT ANESTHETIC when the pain gets high enough that I can't easily function. I know a thing or two about inflammation and it's effects.

"The source of your pain is inflammation."

At least he had the good sense after reviewing my chart to NOT recommend I take NSAIDs (a big no-no with methotrexate - too taxing on the liver). He gave me a prescription for a topical anti-inflammatory gel that has a low uptake into the blood stream and recommended I ice for swelling and come back in a month. While I'll give the gel a shot, and I'll hope for some relief, I'm really not confident a month will make some magical difference.

This is one of those days where if I thought just putting my head down and crying until I can't cry any more would help, I'd be typing this post from a lake of tears and snot on my desk. Crying doesn't help. Getting mad doesn't help. Hell, nothing really helps. About the only thing I can do is to choose to not give in to the pain, to not give up on the day-to-day tasks, and to keep loving my husband and son as best I can from the core of who I am. I wear a necklace that says "Live Life" - that's my motto. Live it, don't give in to the stuff that can only be a crippling factor, emotionally and physically.

- Posted using BlogPress from my iPad