Showing posts with label Crohn's Disease. Show all posts
Showing posts with label Crohn's Disease. Show all posts

Monday, July 21, 2014

Pincushion

I've often felt like a pincushion, getting poked by needles for blood tests and IVs.  I had the pleasure to once again be a pincushion last week.  One poke for my Remicade IV infusion, one poke for blood tests.  The Remicade infusions are supposed to keep my Crohn's Disease in remission.  So far so good I would say.  I certainly don't feel as good as I did when I was pregnant with Preston, but I don't have stomach aches on a daily basis.  I don't even have them on a weekly basis.  I receive these infusions every 7 weeks and I will save you the heartache of how much they cost.  I'm very thankful for insurance!  And yes, I get to be a pincushion every 7 weeks.  Not fun, but I feel like it's doing a better job than the pills I used to have to take on a daily basis...which at one point was 15!

The blood test was for more genetic testing, which my OB suggested.  The hope is that everything comes back negative and it gives me a little bit more peace of mind for a future pregnancy and baby.  The test will cover about one hundred diseases and deficiencies, but the main thing we will be looking at is the results regarding "Medium chain acyl-CoA Dehidrogenase Deficiency", or "MCAD).  MCAD is 
"a treatable inherited disease in which the body cannot turn certain fatty acids into energy due to a deficient enzyme. As a result, partially metabolized fatty acids can accumulate in body tissues, causing damage to the brain, liver, and other organs. If treated early and consistently, people with MCAD deficiency can live normal lives."
(Source - Counsyl website - https://www.counsyl.com/services/family-prep-screen/diseases/medium-chain-acyl-coa-dehydrogenase-deficiency/)


Apparently, MCAD has been associated with SIDS.  While the study is rather recent (~5 years), if I'm not a carrier, it could give me a little peace of mind as to not losing another child to SIDS.  This study states that it's "possible" that undiagnosed MCAD could have caused SIDS.  Hopefully the results come in this week or at the latest, early next week.  Think good thoughts for the results to be negative.  If they are positive, we'll have hubby tested and go from there.

Fears are interesting aren't they?  I used to be afraid of needles.  I can remember being in grade school on the days where we would get our immunizations.  I hated it.  Honestly, couldn't care less now when I need to be poked.  Funny story from when I was in the hospital in 2012, forgive me if I forget which time.  I want to say the first time in May?  I had an IV, since I was NPO (nothing by mouth) due to the bowel obstruction.  The IV gave me nutrients via saline solutions.  The IV gave me pain meds and nausea meds.  But I still had to be poked every morning for blood draws.  This one day, they had to change my IV (it only stays in one area for 2-3 days before they have to change it as to not damage the vein).  They undid my IV, and then something must have come up because at least an hour passed before they tried to get a new line in.  One nurse tried.  Another nurse tried.  The head nurse tried.  Then they called the big guns, the flight of life paramedic.  She couldn't do it either.  I say big guns, because the flight of life paramedics are supposed to be the best at putting in IVs, since they have to get them going in cases of life or death.  They eventually had to get an ultrasound machine, to find a vein, to be able to get the IV done.  I had a good laugh.  I'm sure morphine helped, lol.  Needless to say, I've never been poked more in my life and I'm not afraid of needles anymore.  I don't really feel afraid of much anymore.  Side effect from losing your baby?  Highly probable.  I could be afraid that the results of this test will show I'm the carrier of MCAD, or perhaps something worse.  But what's the point?  Life is going to throw at me, what it wants, and I will just have to find a way to deal.  I've done it so far, haven't I?  Is it fair that I've had to? No, but life isn't fair.

Perhaps, I'm a pincushion for needles, but everyone is a pincushion to something.  We all have our troubles, our obstacles to overcome.  We all have "our thing".  They aren't all equal, but no one person is the same, so someone else's struggle might seem miniscule to me, but it can be like climbing Mount Everest to another.  When we were younger, we were taught, "don't judge a book by it's cover".  Everything isn't what it always appears to be.  Be kind, you never know when you'll make someone's day.  Someone might seem to be doing fine, but down under, they could be going through the toughest thing they've had to face.

Wednesday, July 16, 2014

Beauty is in the eye of the beholder

Society has such high standards when it comes to beauty.  You have to be tall.  You have to be thin.  You have to be tanned.  You have to have perfect hair and skin.  And even then, Photoshop is used to make models somehow more beautiful.

I'm not trying to take anything away from these beautiful beings.  Most models work really hard to get where they are.  Some probably have really sad stories and battle issues they might not have to deal with if society wasn't so cruel.  But doesn't everyone have a different definition of what is beautiful?  Aren't we all unique because we have our own tastes, likes and dislikes?  So why are we so easily susceptible to accepting what society calls beautiful?  Why do we let ourselves be influenced by it, and tear ourselves apart to reach that standard?

I struggled with feeling beautiful as a teen.  I had some acne, braces and didn't have a "perfect" weight.  As I got older, and wiser, I was more often able to feel comfortable in my own skin and even sometimes consider myself as pretty.  Battling Crohn's disease though has not always been kind to helping my self-esteem.  Being on Prednisone, or the devil pill as I like to call it, certainly caused me to swell.  I dealt with bloating more often than I'd like to admit.  Those things often made it tough for me to feel pretty.  I felt chubby and overweight.

My attitude took a total shift after my first bowel obstruction, and even more so after my second obstruction and subsequent surgery.  Life will throw obstacles at you throughout your life, and you just have to roll with it.  You have to continually learn to adapt and grow.  Will I have to take the devil pill again one day?  The odds are high.  Will I let it get the best of me? No.  Okay, well easier said than done since Prednisone definitely affects your state of mind too.  But, if I have it my way, I will deal with it when it comes.  I won't let it get to me.  I won't feel "great" in my own skin, but I really won't care what anyone thinks.  This is my battle, this is what I have to do to get better, so that's what I will do.  Will people make fun of me because I have a moonface?  Probably, but I won't let it get me down.  There will always be cruel people somewhere.  Hopefully those people are ones I don't know personally, hopefully they are immature younger kids that don't really know what life is all about yet.

Keep in mind that beauty really is in the eye of the beholder.  Beauty doesn't have to be the perfection that society has pushed onto us.  Beauty can be imperfection.  Beauty can be found in intangibles.  Beauty can be invisible.  I find beauty in the soft sound of the rain, and in the chirps of the birds in the early morning.  I find beauty in the kind gestures one person can display to another.  I find beauty in my husband's incontrollable laughs.  I find beauty in his eyes.  I find beauty in the subtle signs Preston sends me.  I find beauty in the strength I have - the strength to overcome 2012, and the strength to continue to live and smile after losing my precious boy.  I find beauty in a fresh blanket of snow.  I find beauty in the sky - stars, clouds, light.  Where do you find beauty?