Where Did The Summer Go?

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As I sit on my back neck, watching my kids play in the pool, I see the occasional off-colored leaf drift unassumingly onto the water’s rippled surface. I know that summer is nearing it’s end. Late nights, sleeping in, days spent perfecting cannonballs, going on bike rides, completing art projects,and relaxing will soon be cherished and missed memories.

This summer something else wondrous occurred.  My kids gave me time.  I was allotted some undisturbed time in the morning.  I focused on me. When my RA wasn’t too painful, I did some yoga and used the elliptical. I meditated, read books, and watched reruns of Flea Market Flip.  This time will soon end as well.  Rushed mornings with quick showers, hurried breakfasts, a lot of prompting, and possibly even some tears are fast approaching. Days and nights filled with work, school, homework, sports, making lunches, laying out school clothes, etc.will replace pool parties and late night trips to fro yo. I wish I could slow down time, stretch August out just a bit longer.

I’m going to hold onto summer for as long as I can.

 

GUILT

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Before I had my children, my husband and I struggled with my infertility. He was very supportive and more patient than anyone I have ever met. But each month came and went and with each negative pregnancy test and miscarriage my guilt grew.  I felt guilty that I could not give the man I love a child of his own. I felt guilty that my body was broken and would continuously deny me a baby.  Then miracle 1 and miracle 2 happened.

My body was kind and worked for a time. Then the tiny little follicles/cysts that had taken up residence on my ovaries, became angry. Before children, my cycles were crazy and my periods were hell and painful. After children, the crazy painful hell tripled. I was once again feeling the guilt that accompanied rupturing cysts. Sometimes my pain in unbearable. I cannot sit, I cannot move. I cannot be the mom my kids deserve or the wife my husband needs. Luckily, this doesn’t occur every month and when it does, it only lasts a day or two

Then the RA diagnosis came, and it brought more guilt than I can handle. On good days, I’m a little bit more tired and stiff than I should be. On bad days, I cannot get out of bed. My ankles swell and the pain feels like someone put my joints in a vice and just keeps adding more and more pressure. My body feels like I’m walking through a thick heavy fog. I’m lethargic, sore and some parts of me hurt to touch. It’s on these days that the guilt feels so heavy that it hurts to breathe. My kids look at me and I can see the disappointment in their faces. I cannot take them to the park, play catch, go to Target, attend baseball games, or play in the pool. It hurts to move. I barely make them breakfast and lunch. No laundry gets done. No cleaning, no dishes, no food shopping. I try to keep my interactions with everyone to a minimum because the prednisone makes me mean. I watch my exhausted husband walk in after being out of the house since 5:00AM and see him look to me and try to gauge how bad it is this time. Waves of guilt wash over me and I’m gasping for air again.

I’m not sure how to live with PCOS, Rheumatoid Arthritis, and Guilt. I wish their was a pill to take my guilt away.

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Why Are Some Good Things So Bad?

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Last I wrote, I was dealing with a new Rheumatoid Arthritis diagnosis. I am still learning to live with it- the pain, the swelling, the exhaustion, the compromised immune, the medication…

I’m also learning how to live with RA and PCOS.  Sometimes the medications interact in not so positive ways.  Since July, prednisone has been the only means to a semi-normal life. However, it comes at a cost. Besides the mood swings that accompany steroids, I have gained 25 very unwanted and unneeded pounds.  Like most cysters, I struggle with my weight.  Before July, I was in a good place.  My PCOS was under control, my meds were finally “figured out.” I was happy with the course I was taking, and I was ready to focus on my weight.

Then…BAM!  I literally could not walk. Some time after, prednisone made me feel amazing.  What a miraculous little pill. Then…BAM BAM! Another flare up, and this one was worse than the first. No problem! Just take more prednisone. And here we are, 25 pounds heavier. I’m uncomfortable, and believe me, I am accustomed to uncomfortable.  PCOS has left me bloated more often than not. My clothes no longer fit. My face is round and puffy. I’m unhappy.

WAAAAAAAAHHHHHHH!!! There is a silver lining. I have almost completely tapered off of  “mother’s little helper.” Wish me luck!

No Apologies

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I usually apologize or make excuses for when I go months without writing. But, I’m a full-time working mom with a lot of shit on my plate.  So there’s my excuse.

For the past 23 years, I have lived with a somewhat invisible illness.  PCOS (Polycystic Ovarian Syndrome) is not invisible to the millions of women who fight it everyday, but to those who do not carry the diagnosis, we “cysters” are seen as fat, lazy, balding, bearded, and depressed.  I have told my story on this blog before, however, I have recently been diagnosed with an autoimmune disease that is causing pain and swelling in my joints, as well as sucking the little energy I had left after the PCOS was done with me.  I thought it was time to add my two cents into the Invisible Illness discussion.

Since I was 16, I have known what it is like to hate the very essence of yourself. I look at myself everyday and check to see if another pound has joined my once “healthy” frame.  I study my scalp to see if any hair has fallen out or if any new ones are finally growing. I inspect my face for hair that needs to be constantly plucked. I walk around with my abdomen so bloated and swollen that strangers ask when I’m due.  (This especially sucked when my husband and I suffered a miscarriage, had to endure copious tests and invasive procedures, and were considered infertile for years at a time- thinking maybe my 50-70 day cycles meant I was pregnant, and then being heartbroken with every negative pregnancy test.) On any given day, I’m smiling through stabbing pain  in my ovaries as the cysts/follicles that canvas them grow and shrink due to unstable hormone levels.  I have dropped to my knees as cysts burst. There are days when the slightest movement can bring tears to my eyes.  I know the embarrassment of “menstrual malfunctions,” because your period is insane. I know what it’s like to have my body produce too much insulin, not break down glucose, and yet irrationally crave carbohydrates.  I take two different medications daily in hopes of managing my hormones, insulin, and excess testosterone. I have lived with PCOS for 23 years, and I know how it feels to be shamed for having the above mentioned symptoms.

Last October, what seemed like a pretty low-key injury triggered my immune system to go into overdrive, which lead to my recent diagnosis with Rheumatoid Arthritis. So, I also now know what it is like to have such intense joint pain that you simply cannot get out of bed. I know the desperation felt when  your immune system attacks itself. I know what it feels like to have your body so confused by its own failings.  I am experiencing first hand, the ups and downs of prednisone and the never-ending trial and error of finding the right medication. I know the sadness in your children’s eyes when they ask if you can play outside with them, and you have to tell them “not right now.” I know the disappointment in your husband’s face when you walk through the door and he’s hoping to see you not limp.

I am writing this not for pity or sympathy.  I’m writing because we judge each other entirely too much.  All of the cliches about not knowing other people’s struggles are so true. There are an infinite number of other pertinent issues to concern yourself with.   Let people be.  Stop judging.  Support.

FYI- I happen to have some pretty amazing people in my life.  Some have been there forever and have been  supportive for a long, long time.  Some are relatively new, and are teaching me and helping me to adjust to my new diagnosis.  I have a plan.  I have a strong support team.  I am lucky. I  know how it feels to have your husband hold you as finally break and cry out all of your frustrations.  I know how it feels to have your mom rush to your side when you’re doubled over in pain, and call you daily to check in.  I experience such compassion from my young children when they hug me, kiss the tear that escaped and made it’s way down my cheek, and allow me to rest. I know my family and friends understand when I cancel or decline plans because I’m just too exhausted to do anything.  And even though I do hate my body most days, I am proud of its resilience and strength, and I am thankful that it created and gave life to two amazing babies.

Step 1. Learn to love yourself……………………………………….

Absence Makes The Heart Grow Fonder

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Sometimes absence makes the heart grow fonder.  So…did you miss me?

I have to admit something.  I was not just too busy with life since the summer to write.  I was so busy with life that I actually forgot about writing.  I have been too distracted and utterly exhausted to even think about being creative.  That. Is. Sad.  I have been sad.  This winter took a dramatic turn for the worse in early December and there really hasn’t been much improvement since 2015 arrived. But, I’m not giving up hope.

I really didn’t have anything in mind when I sat down to type today.  There are so many things that I could and should, and will write about, when the time is right.  Today, I just want to haphazardly let my fingers dance and skip across the keyboard. I miss the click, click click of the keys as letters pop up before my eyes.  I miss reading and re-reading my sentences while my mind wanders to the expanding mound of laundry in the basement, why my two clamorous children are as silent as I am when I sneak into the bathroom so they don’t hear me, and to the ever maddening question of “what’s for dinner?”

There are a few other things on my mind:

1) I. HATE. SNOW!!!! It was fun and pretty, but now it is the bane of my existence.  I haven’t been to work in over a week because of the copious amounts that have fallen, and tonight 12-16 more inches of that shit is going to fall.

2) I will be 39 in 109 days.  This needs to be my year.  I NEED to focus on getting healthy and staying healthy. I do not want to be a frumpy 40 year old.

3) My kids are growing much faster than I’d like.  I am still working on yelling/cleaning/obsessing less and just letting them be kids more.

4) And last but not least…. GO PATS!!!!! 

Writer’s Block Or Just Lazy?

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I’m about 3 weeks into summer vacation and a new exercise regimen.  Not having to get 2 kids and myself up and prepared for the day, and out of the house before 7:30 AM has allowed me some time in the mornings.  With that said, I have had to be brutally honest with my 2 children.  I told them that I was going to take about an hour every morning to use the elliptical machine (thanks Mom!) practice yoga, and soon begin a kettle bell routine.  This has not come easy.  I am interrupted a minimum of 3 times.  “Mom, can you get me chocolate milk?  Mom, he won’t help me!  Mom, I went poop.  Mom, she hit me!”  I have tried locking my bedroom door, but both of my savvy children can pick a lock with the ease and agility of Harry Houdini.  I have yelled, God have I yelled.  I dislike myself when I yell.  My kids don’t like me when I yell. So, I trudge on, and pray that I can make it through without interruption.  Wish me luck!

 

 

This past Thursday was our 10 year wedding anniversary.  It really doesn’t seem like 10 years have gone by.  Though, some days, it feels like 20 years have passed since we were actually “us.” We spent the day/night together on Saturday while he kids hung out with Papa, Nana, Uncles, and cousins.  It was nice to be “just us.”  (Secretly, I missed my children.)

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The PCOS battle continues.  My hair has stopped falling out faster than the speed of light, and the medication is still messing with my uterus. I’m really hoping the positive changes we’re making will help with it all.

 

Here’s to writing more often.

Woah! Where Have I Been?

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I honestly don’t know where I’ve been! My daughter was diagnosed with a rare and weird autoimmune disorder, I started a ridiculously difficult course (for work), and work itself has been INSANE, and that’s putting it mildly.  Image

Has seem to be the motto at work lately.

My hair is still not growing back, but the falling out has decreased. The side effects of the spiro are still lingering. I’m eating better and exercising but not as much as I’d like or should.

We have two new frogs.   Fudge                   tree frog     Spike

 

 

OK, I think we’re all caught up now.

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My 3 year old daughter repeatedly responds to my requests with, “OK, OK, hold on.”  It drives me batshit crazy.  In the morning while I’m doing my best to get two kids ready, trying to make myself look presentable as I can, and leave the house with everyone’s lunch, breakfast, schoolbags……”OK, hold on,” is the LAST thing I want to hear.  When I call her to come to the table for dinner, “OK, hold on.”  At night when I prompt her repeatedly to brush her teeth and pee, “OK, hold on.”  Today while I was desperately trying to get her to hurry her little bum up and walk a tad bit faster to get into the car, “OK, hold on, ” followed by, “Mom, why are we rushing anyway, we’re on vacation.” That question hit me like a ton of bricks! Why was I rushing? What was so important? I have been watching my little girl lately and she’s so sure of herself (most of the time.) She does things her way and at her own pace.  I don’t want to ruin that with my own neurosis. ( I think I may have passed some on to my son already.)

In an attempt to save my children from the screaching banshee I turn into in the mornings, I am going to get up earlier.

Image(This is the much skinnier, with way bigger boobs version of  banshee Colleen.)

Will we still be rushed in the morning? Of course.  That’s life, but maybe I can make it a little easier.

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Balance Quest

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It’s almost Christmas, and I have not bought a single present for anyone other than my children.  This is not really like me.

I’m tired.  The spironolactone I started taking for my hair loss is kicking my ass.  I am one of those people that look at the list of possible side effects and immediately start planning on how to deal with them…cuz I’m getting them…ALL of them!

I’m fatigued, I have sporadic nausea, I’m dizzy,  my migraines have increased, and my period is now gracing me with its appearance every other week.  I’m not sure if the sprio and rogaine are helping my hair grow back yet, but I’m pretty sure the falling out has decreased!!  Focusing on my hair and Christmas and the kids, has distracted me from focusing on my husband and the rest of me.  My weight loss has stalled.  I know it’s my fault, I’m struggling with balancing everything.

Finding and maintaining balance in your life is hard.

Something always seems to give.  How do other women do this? Take a good look at this woman ^ this is not possible…not all of the time.  I want my kids to be happy and know that they’re loved, I want my husband and I to be how we were 10 years ago (less stressed, happier…), I want my house to be somewhat clean and my bills to be paid on time, I want to be a compassionate teacher and reliable worker, I want to be healthy, I want to lose weight, I want to find the energy to exercise every day, I want to be a supportive daughter, sister, aunt, friend, I want to have fun again, and worry less.

PCOS SUCKS

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I have always been open and honest on this blog, in attempts to raise awareness, and hold myself accountable.  My weight has always been something I’d rather not talk about, but I have, and I’m OK with talking about it now.

This blog may be the most difficult one to write.

Last May I posted about losing my hair.  This Thursday, I finally met with the head of Women’s Dermatology/Hair Loss at a world renowned hospital, and………………………………………

she was nice.  I sat in traffic for over two hours.  I met a very friendly valet guy who, pointing to my extremely old foot tattoo, said. “oh, you a gangstaaa, huh?” I took more than one free sample of the new Aveeno face moisturizer with sunscreen.  I was told that I have been doing an amazing job managing my PCOS, and keeping my hormones somewhat balanced.  I got my scalp examined, and my hair pulled.  I left with very few options.  I have started Rogaine for women, and have been agonizing over tons of data on Spironolactone and Propecia, (2 more drugs that I will have to take for the rest of my life, if I choose to go that route.)

I came home and threw myself a little pity party.  I cried.  I have always been known as the redhead. I love my hair.  While still whimpering, I came across a blog article posted by a family member of a 35 year old women, who had written the piece when she was 31 and first diagnosed with breast cancer. She lost her 4 year battle, and here I was crying about my hair. I felt guilty, but I still sat there and cried.  Yet another piece of me is being taken away by a disease that impacts 5-10% of women, yet not too many even know about it.

ROGAINE: I didn’t want to use this! If I ever stop, I will lose whatever hair grew back.  (that’s if it works-there is a 20% success rate.) I was thoroughly warned by the doc, the pamphlet in the box, and the millions of women using it, who also have access to a computer and are not afraid to use it.  There is a “DREAD SHED.” I don’t have enough hair up there to shed, let alone shed dreadfully!! This shedding is supposed to begin 2-4 weeks in and last a few weeks.  I’m 3 days in and it has begun.  I lost my shit today in the shower.  How can this be happening so soon?  My daughter stood in front of the bathroom mirror last night and pretended to massage her own scalp, while watching me apply the R word.  She turned to me and said, “Mama, our hair is so pretty, your’s is orange and mine is bwown (we’re having a little r pronunciation issue.) Then the sadness returned and I immediately began to worry that I passed this bag-full-of-suck disease to her.

PROPECIA: a drug usually never prescribed to  pre-menopausal women due to horrendous birth defects in male fetuses. (No, I am not planning on having any more children, but if anything ever happened, I don’t want to be faced with that decision. )

SPIRONOLACTONE:  many women with PCOS use this drug to treat excess body/facial hair, cystic acne, and hair loss, and I hear it’s effective. This drug (in extremely high doses) is known to grow tumors in rats.  I have made a conscious choice to not use birth control pills to help with my ridiculously painful and heavy periods because of the increased risk of breast cancer.  So, now I’m faced with this decision.   I have read more research articles, blogs, and discussion board posts than anyone ever should. I have cried, prayed, cried, and prayed some more…and I’m still undecided.

Please don’t read this and think that it’s all about vanity.  I’m not a vain person.  I am just trying to hold on to a piece of my femininity, a piece of myself.  I know that people are going to judge me and say, “Your appearance- weight, hair, skin… doesn’t define you.”  And all I can say to them is, ” Until you know my joy, know my pain and know my struggles-
Until you’ve walked these shoes, paid my dues and felt my troubles- Until you’ve shed my tears, known my fears in all my years -Only ’til then, you only know what you think you know.” (Until by The Love Experience)

I am also extremely aware of all of the magnificent blessings I have in my life, and I thank God and the universe every day for them.  This is a tiny hurdle in the greatness of my life, and I will eventually get over it.  Thanks for listening while I try.

The Comeback of the Blogging Bitch

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The  title is a little tribute to my brother.  You’re welcome Bill.

Honestly though, this does feel a little like a comeback.  I have been MIA from the WordPress World.  Once again, I allowed the events, stressors, and fatigue from daily life to keep me from writing.  I know excuses, excuses.   So here’s a little update:

My husband’s goddaughter moved in and moved out. (We all miss her, but we’re happy that she’s happy.)

I went back to work. (Sadly, my summer ended on 8/26 and I’m back to being a full-time working mommy.)

My son started first grade and my daughter returned to her “school” as well. (These transitions were the smoothest of all!!!)

I fell off of the Yoga Booty Ballet wagon, but am happy to say that I have returned. (I like when my body doesn’t ache with every move.)

I downloaded a couch to 5K app, as we’re planning on running a 5K for my son’s school in April. (Dear God, please help me.  I am not a runner…yet!)

The numbers on the scale are still moving downward, but at an extremely sluggish pace.  My body feels and looks different.  My clothes are fitting a smidgen better. But the numbers are slowly driving me mad.

I have an appointment with the head of the Women’s Dermatology/Hair Loss Clinic at Brigham and Women’s.  I’m hoping she can provide some assistance so I’m not bald by the time I’m 40.

My friend and I took my cousin’s wedding pictures last Saturday, and I now want to quit my job and take photographs for a living. (Big Dreams!!!)

September and PCOS Awareness month is coming to an end.  I will leave you with this: