Chronically Parenting – Back to Work

me

    Scrubs on and a Starbucks in-hand and I’m ready to go! Going back to work after an extended time of being hospitalized or home with an exacerbation from our chronic illness can feel really exciting and super scary. I was determined, as always, to get back into work mode after my last 2 week stint in the hospital, and almost 2 months of being out of work.

    When you’re a disabled parent trying to work it’s even scarier. A million questions run through my head and I have to fight to not let self doubt overcome. Will I be too tired to make dinner when I get home? How can I balance my symptoms with my strengths? Can I still be successful and doing both? Being a chronically sick parent is already a big job. Actually going to work can seem daunting, and for many, is simply not something they can do…and that’s OK.

Here are a few tips I’ve found helpful when trying to balance family, work, and illness

  1. Get LOTS of sleep the night before you work. I work part-time as, I’m able to, so my work days are spread out. I try to make sure I’m getting a solid 8-10 hours at night so I can survive being awake for an extended period of time on my workday
  2. On your workdays, DO NOT pressure yourself to come home and perk up the house and fix a four course meal. Throw food into a crockpot the morning-of or order pizza. The dishes can wait and an unmade bed does not make you domestically inept.
  3. Have a back-up plan. My kids have a crazy sports schedule. On the days that I work, I always have a “Plan B” ready in case I’m too fatigued to take them to their after-school activities when I get home. Call friends/family in advance and ask if you can call on them to take kids to and from activities if you are unable to. Jr. will probably thank you to not curl up on the field and sleep through his soccer practice.

Almost Gone…

    journey2

(last day of plasmaphresis)

September 9th, 2016. It was day 10 in the hospital. I woke up in my room, got up, did some yoga, and prepared for my last plasmaphresis treatment. Excitedly and with much anticipation, I prepared to finally go home. I rolled into my treatment and relaxed through my last 3 hour infusion and said my “thank yous” and “good-byes” to the dialysis staff that had been so wonderful to me during my stay.

Back in my room, it was time for my temporary dialysis catheter to be removed. The nurse came in and pulled the long, thick catheter out from my jugular and I lay in my bed as instructed. When my timer went off, I was up and ready to be discharged! As I was awaiting my transportation, I began packing up some things in the bathroom when, very suddenly, I couldn’t catch my breath and started experiencing a searing sensation in my chest. I felt my vision start to narrow and knew, immediately, that something had gone very wrong. I made my way back to my bed to call my nurse. I could barely get the words out “Help, I can’t breathe” before a whole team of nurses and doctors were in my room, and then my world went dark.

For the next four hours I was in and out of consciousness as doctors and nurses hurriedly got me from one imaging machine to the next trying to grasp what in the world could be happening to this girl who was just about to leave. I barely remember any of it, but my nurse did have to chuckle that the only coherent words I was able to speak in response to painful sternal rubs were “Starbucks” and “Football”. (I was suppose to be going to my sons football game the evening of my discharge and Lord knows I was getting some Starbucks on my way in!)

When I finally came to, I was extremely short of breath, my blood pressure was dipping down to about 60/30 (Super bad BP), and my heart rate wouldn’t slow to less than about 140 beats per minute (Super fast HR). I spent two days in my room like this. Short of breath, confused, on oxygen, with no answers. On day three, I could feel my body beginning to lose the will to fight and even remember asking, in a semi-conscious state, if I could just take a break from breathing for a little bit.

And so I did. My respirations were down to about 8 and I lost consciousness again. Four hours later I woke up and I was moved into ICU and put on a respirator to help me breathe. If you ever want to know what that’s like, just go stand in a wind tunnel for a while. Oxygen was being forced into my diminished lungs like gale force winds but I was thankful for having some help doing this very impossible task of just taking a breath. I didn’t think I would make it. It’s an interesting place to be, that place where you are face to face with death. I faced death and found peace….and a golden frog (but that’s a weird story for another day)

journey3

(It’s ok, you can sing “Highway to the Danger Zone” in your head when you see this pic”

    But it wasn’t my time to go just yet. Over the next two days I had a total of 2.5 liters of fluid drained off of my lungs. I had no idea that my lungs were Olympic swimmers but I’m thankful they got the Gold medal for treading water. I was able to be removed from Oxygen and was finally sent home, still pondering the great mysteries of what could have gone awry on the fateful day of my first discharge.

journey

(selfie with the fluid drained from my left lung because….why not?!)

    I took home a few lessons from that near-death experience that I’d like to share:

  1. Death is not scary. You need not be afraid of dying. It’s the only thing in this world that holds any guarantees. We will all pass in our time, but it is a peaceful journey.
  2. It’s really hard to eat or drink when you can’t breathe. And I really like eating. I think that part sucked worse than almost dying. Like, who can go 3 days without Starbucks?!
  3. There can be beauty in suffering. My family and friends came together in the most beautiful and heroic ways. They cared and reassured my children, held my hand for long and sleepless nights, wiped my tears away when I was exhausted and frustrated, and bared their souls and hearts in my time of great need. I witnessed the very best of every one in my life in those moments and I will forever be grateful. There is nothing more humbling than being given a gift of service that you are unable to repay.

 

 

 

 

Chronically Parenting- Day 4…

 

I know I’ve covered “relapses” and “FaceTiming” before but I wanted to talk about it some more. At present, I’ve been in the hospital for 9 of 11 days receiving plasmaphresis for the condition I have called Tranverse Myelitis. (side note: I DO NOT ever say “My Transverse Myelitis.” It is the chronic condition that I have but it does not get to define who I am”) <—So Stubborn I know. Anywho, around day 4, I get a massive case of the Bummers. I’m missing my kids terribly, missing being at their football games, tucking them in at night, and reading with them. Thankfully, we live in an age where we have programs like Skype and FaceTime to help keep us connected in awesome ways. The upper left photo is me doing homework with my youngest. The upper right photo, is me being FaceTimed in to my son’s game. I’ve found that continuing to take part in their daily activities is monumental when you have a condition that keeps you in the hospital regularly. So, if you don’t have these “new fandangled technological advances”, I highly suggest getting them and learning to use them.

Some ways to “Be there” using FaceTime or Skype besides just to ask what the kids ate at lunch for school today:

  1. Doing homework/reading with your kids daily (also takes a little pressure off of the other parent that’s at home juggling everything while you’re in the hospital)
  2. Sporting events, Band shows, Plays, whatever you’re kids are into, just because you can’t physically be there doesn’t mean you have to miss out on the action
  3. Playing games! Hangman, Tic Tac Toe, Board games. This is a fun way to interact!
  4. Have fun planning a special day when you get out of the hospital. My son wants to go on a camping trip for his Birthday coming up so we’ve been devising a list of things we will need, people he wants to invite, and selecting a location.

Chronically Parenting – I feel like I’m forgetting something…

spilled coffee

    School activities, dentist appointments, sports schedules, birthday parties…It’s hard enough to remember everything that goes on in a single day with your children without having short term memory loss, a symptom of many neurological disorders.

    Here’s how leaving my house usually goes: get kids in car, back out of driveway, forget football helmet, pull back into driveway to go in and grab helmet, get halfway down the block, remember that I need to bring a borrowed book back, go back to house to get it, pull back out of driveway just to remember I left my wallet on the counter. Is it any wonder that we are 30 minutes late getting anywhere? And that’s making “good time” for us. Ugh, so frustrating, but I have learned a few things that have helped my Dory brain along the way (knocking down being an hour late in half. It’s the small victories people)

Tips to help you remember:
1. Alarms: Oh how I love technology these days! Every time I have ANYTHING to do, I immediately put it into my calendar in my phone and set two alarms to remind me. (one for the day before and one to remind be an hour before) I do this for doctors appointments, practices, remembering I need to pick up snacks, whatever. Everything goes in the calendar and everything gets an alarm!

2 Sticky Notes: Yellow is a happy color so why not just go ahead and plaster your walls with pretty little yellow sticky pad notes to remind you of what your plans are. I stick notes on my computer, my bathroom mirror, and my fridge.

3. Wall Calendars: I have three. One in my kitchen, one in my office, and one by the front door.

Is this all super tedious? Absolutely! But it has saved me, and will save you, from the frustrations that come with being forgetful. I may not remember what I had for breakfast yesterday or what the name of the movie I saw last week was, but I’ll darn sure remember to pick the kids up from Practice, and get to my dentist appointment.

Chronically Parenting- Life keeps moving, even when we cannot

fast

 

   Before getting this ridiculous condition, I had four very active kids with crazy sports schedules and a social calendar that probably matches that of Justin Beiber. And guess what? After I got sick, they still had the same activities and social life. Whether I’m well or unwell, life doesn’t stop moving at it’s radical pace, especially when you’re a parent.

   This was probably the toughest part of my life after being diagnosed with a debilitating illness. I tried to keep up like I could when I was “healthy” but I just couldn’t. I felt like a total failure as a parent. I was discouraged and frustrated…. and unwilling to ask my kids to change their plans and alter their dreams for me. So this is what I did:

Think of your fellow mom friends as a force for good, like transformers if you will. Mombots unite! It is only thanks to the amazing moms in my life that my children have been able to have a fulfilling summer and a great start to their school year. These moms have taken my kids with them on outings, taken them to football practice, and have taken them under their wing to love as their own. Did I ever expect it? Absolutely not. But I am an extension of my fellow Mombots and we work together. I do for them as I can and they do for me as they can. Be a community, a village with your group of Mom friends. It will create a solid bond and enrich your life and your child’s. It’s OK to ask for help!!! Don’t let your illness be some big secret. Your mom friends, your true friends, are going to be there for you! I am unafraid to ask my Mombots for help, and they are unafraid to ask of me. It takes a village! <— If you’re not familiar with that saying, Google it. The bottom line is, we are not in this alone.

(This particular post is dedicated to my Mombots. I love you and appreciate you more than I could possibly put into words. Thank you Gina, Melissa, Madonna, Jill, Tammy, and Olivia)

Chronically Parenting – Back to School

school

So, does anyone else besides me go into full on panic mode about two weeks before school starts?! We are going from a go-with-the-flow, easy going summer …. to chaos. Back to school shopping in crowded stores, Open house events, registration, and don’t even get me started on the anxiety I’m having about have to actually be up early every morning and get my kids to the school bus on time…in clothes…and fed…and maybe brushed hair. I think I may be hyperventilating a bit just while I’m writing this. Having a whacky medical condition on top of it all just isn’t helpful.

So, this year I’ve done a few things to help prep myself for my kids going back to school:

  1. Online back to school shopping. Thank you Amazon for making my life so much easier. I can’t even pull up to a Wal-Mart during back to school time without needing to breath into a paper bag.
  2. My kids can eat breakfast at school. I used to feel guilty for not having a great breakfast ready for them before school but in true “me” form, I always just ended up throwing pop-tarts at them as they were headed for the school bus anyways. If your childs school offers breakfast, take them up on it.
  3. Night-Before Prep. I have my kids set out their clothing, school bags, lunch boxes the night before school. This saves me the hassle of frantically looking for underwear and socks in the morning, and I get about an extra 10 minutes of sleep….and I need every minute of it.

Chronically Parenting -Don’t Judge

hotmess

It’s almost 11am on a Monday morning when my doorbell rings. Crap, I forgot that somebody was picking up some bedding I sold on the local trading website. My kids are still miraculously asleep and I’ve been in and out of sleep for hours because my body is in total retaliation mode today. I get up to go get the door, still in my pajamas and with my hair all a bedhead mess. As I open the door my two little dogs run out to chase down the, very well put together, neighborhood mom group that goes walking every morning. As I waddle over to them looking three shades of crazy-lady, I’m totally embarrassed. I gather my dogs as searing pain runs up my spine and turn away from them with my head down and an embarrassed smile. I get the dogs in the house and the bedding lady squared away and then drag myself back into my bed. It’s now 11:15am. Guilty thoughts roll through my mind. I should have had my kids up and made them breakfast by now. Who’s not wearing a bra by noon?! Did those other moms gawk at me after I left? I’m judging myself and making the radical assumption that others are too… and then it hits me:

  1. How Blessed am I that I can be in bed in my pajamas at 11am on a Monday morning when I don’t feel well.
  2. Whether disabled or not disabled, every mom has her #hotmess moments. Maybe it’s not so bad to be a public example of being a mom that doesn’t “have it all together all the time.”
  3. I shouldn’t be so hard on myself. My kids slept in. When they got up, I made them breakfast and then crawled onto the couch with them to snuggle up. I’m in pain and I don’t feel well but all my kids know is that they get to have snuggle time with Mom.
  4. Other people may judge me, or maybe they don’t… But the one person that shouldn’t be judging me is me. I’m a total #hotmess , but I’ll never stop trying to be the very best mom I can be with the circumstances I’m under. What more can we ask of ourselves than that?❤