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Friday, January 29, 2016

It's Time to Make Time...for Me.

 
Eli, or Baby "M", as the world affectionately called him for 9 months, is almost 6 months old.  Some days it feels like an eternity since I brought our sweet son into the world and other days I wonder how the time has gone so fast.  After his birth my husband and I were sent through a whirlwind of emotions as we learned about our son's skin disease and how to care for him.  I spent every day at Eli's side while he was in the NICU for three weeks, working with him on eating, learning how to bandage him, talking to all kinds of specialists, and just holding and cuddling him to show him how much I loved him.  Most days I did this alone while my husband was working so we could still pay our bills.  I slept on a couch every night in Eli's room and rarely allowed the nurses to feed him or change him in the middle of the night.  Nights became short and days became long.  I lived and breathed our son.  He was my number one priority.  That Heparin I was supposed to take for 6 weeks post-partum due to my risk of blood clots-didn't take it.  Never remembered to. The vitamins I had been taking for the last couple of years which helped me keep my own genetic disease under control-stopped taking them. Who had times for vitamins? My son needed me more than my body needed them.  Breakfast and lunch-what are those? I was lucky to eat once a day. And boy did that baby weight drop off me super quick along with another 15 lbs before we got send home from the NICU.  I was physically and emotionally exhausted and honestly thought once we got home that things would settle down, we would find our routine, and I would have time to eat and take my medications like I was supposed to.

Boy was I so wrong.  The stress just increased.  It is incredibly hard to include a daily 3 hour bandage change into a baby's routine when they are eating every 2 hours and napping in between feeding.  We had home health nurses coming three days a week and more times than I can count on both hands they would not give me any more than a hour notice of when they were coming and expected I would have everything ready-bandages cut and pain meds given, and Eli's bath already done...and they only worked until 4pm so I rarely had time to fit in feeding myself a meal before 6pm let alone taking my medication since my husband worked during the day and I took care of Eli and our housework alone all day long.  The emotional exhaustion actually got worse, until Eli was 8 weeks old and started smiling and was able to show reciprocated emotions. But as soon as he was able to interact with me it was time for me to go back to work....not part time, but full time.

Working five days a week, an hour away from home, from 2pm-10:30pm, created a whole new challenge. I didn't have to do Eli's bandage change every day anymore because he was approved for enough nursing hours that we could stagger the hours and me and my husband could split the bandage change responsibility between the two of us.  But I still was attempting to get myself ready for work and do a three hour bandage change before 1pm three days a week. I never had time to eat lunch before I left for work, take my medications, or pack lunch and dinner to take with me.  I could never even remember to grab my vitamin/med bag before I left work to take it with me either. Every night I would get home around midnight and the next day I would rush around all over again.  I was lucky to eat fast food on my way to work and could never forgo the processed protein sandwiches that came with the meals even though I knew I needed to start restricting my protein again since I don't metabolize it and no longer had a human in me requiring protein to grow. 

My schedule was such a challenge and I felt like not only did I not have enough enjoyable time with Eli, but I never had time for myself.  I was neglecting my own medical needs to take care of his. And when I was home, his medical needs were just about the only thing I did get to take care of even with him-we rarely got to just play together or cuddle up together.  I begged and pleaded for a new schedule with my manager but the idea wasn't even really entertained. So when a full time and part time position came open at another hospital and I was told I could make my own schedule to fit my family's needs-I knew I had to jump ship and was hopeful this new schedule of having Mondays, Wednesdays, and Saturday's off and still having my Friday and Sunday mornings and afternoons off would help me take care of our needs better. Number one being my own health.

Since Eli's birth I have been experiencing chest and abdominal pains very frequently and overall my body just feels worn down.  Now, I had lost an additional 20 pounds of my pre-baby weight so I thought I LOOKED healthier than I had in a long time-but I didn't feel healthier.  I called my genetics clinic and requested blood work to check my Homocystiene levels and amino acid levels to see where I was at and how much work I would need to do to get myself back on track.  I really wasn't surprised when my levels came back just as high as they were when I was diagnosed with Homocystinuria 4 years ago after being untreated for 25 years.  I was, however, very disappointed in myself because I had such tight control of my disease prior to getting pregnant and pretty good control over it while I was pregnant.  To put things into prospective-elevated levels of Homocystiene in the blood increases the risk of blood clots which can lead to heart attacks and strokes.  A normal Homocysteine level is 5-15.  Mine was 255.  This increases my risk a lot. And so does the fact that I didn't complete my Heparin treatment after my son was born and had a c-section which also increases the risk of blood clots. 

I once again thought as soon as I start my new hours I would have more time to devote to getting myself healthier again. I wanted to get back to taking my vitamins and medication, eating healthier low protein meals that I prepared with fresh products and not just eat steamed vegetables out of the microwavable bags all the time, and wanted to get into a work out program to make sure I didn't gain back the weight I lost and with the hope of getting back down to my pre-diagnosis weight (need to lost 25 more pounds for that). But Eli has been so uncomfortable all day and night this past month, has been having frequent feeding issues, and my days off have been filled with training new nurses that never worked out until we finally found one we liked this week and are hoping she will get more comfortable and will stick around for a long long time.  I've been gaining some weight back from the stress of not knowing how to help our son lately and the stress of worrying if we would ever find a nurse that would work out for us.  I did finally meet with my genetic doctor for the first time since I was 16 weeks pregnant, so almost a year ago, and he was certainly understanding about why I have "fallen off the wagon" with my disease control but also reiterated to me the serious risk I was putting myself in by sharing about another patient of his around my age who just had a heart attack due to not managing the disease.  He didn't even have to tell me about this patient for me to understand how serious I need to be about getting it together again-this entire past month I've been thinking about it and cry because I know I have a son now who NEEDS me alive to care for him.  What good am I to him if I can't even take care of myself?  And what good am I to him if I died or was in the hospital following a heart attack and had lifting restrictions when I got out?!  For three years I worked my butt off to control my disease so I would have a healthy pregnancy and now that he is here I'm just going to ignore the fact that I could die if I don't eat right and take my meds?! I think not.

 
My genetic clinic nurse and nutritionist are working with my insurance and some pharmacies to reduce the barriers for me.  One barrier being my insurance doesn't cover my life long medication which is $75 per month or protein supplements which are $3000 a month.  I have to take charge and reduce the other barriers which is making excuses and not making the time for me.  That's my goal for this next month-settle into a routine that includes taking my meds, exercising, and healthy meal planning/preparing/cooking/eating.  I think if I can do this I will be so much more effective at having a routine for Eli too and not feeling overwhelmed as if I have no time for anything at all and everything is one giant burden. 


I know all you momma's out there know what I'm feeling and have been there to, or maybe are still there. Please don't forget to take care of yourself. Our babies need their momma's and so do their daddies! Maybe now is the time for you to take time for you too.

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