Tuesday, January 22, 2013

disabilities, life with them

I usually blog about baby and child loss, and life after, but today, I wanted to talk a little bit about life after loss with disabilities. 

It took me many years to admit I had a "disability... much less disabilities."  And to this day I get mad when I hear the word "handicapped."  Seriously, I just do. 

Me, handicapped?  Yes, yes I am.

I wasn't always like this, you know disabled and all. 

I was completely healthy until I went into labor with my second son.  And that time, those moments changed my life forever.  That time left me without my son and without my health, for my lifetime.

I remember applying for a "temporary" handicapped parking tag, you know the one you can hang on your mirror.  I was okay with doing that, because it was temporary, right?  It even had an expiration date on it!  YAY!  When it expired, I would be not handicapped anymore, right?


It would be then I was asked to get a "permanent" handicapped tag... and it would be then I said "NO!"  I haven't gotten one since. 

I remember going into the handicap stall at a bathroom and when I walked out got drilled by a lady telling me that stall was for those that "needed" it...

I needed it, she just couldn't "see" my disability.

Think twice before you ever assume someone is or is not in need of that handicap position.

Okay back to that bathroom story real quick, so I did yank my catheter out of  my purse and practically shoved it in that woman's face to let her know I obviously was in the "right" stall and that she was way out of line... she apologized and left quickly.  Hmmmm... wonder why? 

Now, to the rest of the story.

Lately I have been really frustrated with life, just life after such loss.  It is hard, really hard.  And coupled together with the loss of my son, it doesn't seem to get easier, but with God's grace, I get through every day.

I am well aware of how blessed I am, you can refer to my blog yesterday in regards to that!

But today, just wanted to reach those that I don't have the "connections" with through social media.

Those out there that suffer with a disability(ies) like me. 

Who are you?  Where are you?  I wonder do you get frustrated as I do?  But with the same breath thank the Lord for life, even as it is?

I mean, real life, real life with injuries stinks.
Like the concern/ worry/ aggravation I have every month of running out of catheters.  I cannot pee for free and that always weighs on my mind. 

200 catheters are what I am "allowed."  And apparently, I am only supposed to use 4-6 of them a day... well, they obviously didn't know me before my injury!  I have always been the pee baby!  Always!

I have to closely monitor the amounts of liquid I intake because I know that the more I drink, the more I have to pee...  the more catheters I use... the sooner I run out!

You may be thinking omgosh, TMI here, but I promise there is a point to all of this!  Keep reading!

WHY oh WHY can the insurance companies or the government tell me or anyone else how many catheters we can use?  I mean, really?  Do they think I am going to black market them or something?

Geez, it's a never ending battle.  Every month the struggle on the phones with the people on the other end asking me are you sure you need so many?  DUH!  I almost cannot tolerate the conversations.  Okay, okay sometimes I haven't tolerated them so well.  But...

Anywho...!!!  Then there's that concern if something happens, you know like a natural disaster or something... hmmm, like a hurricane or something!  If I am in a place where there are no catheters... I may be the only one checking in on a plane with 120 catheters for 3 days, but anything can happen, don't we know that?  When we traveled to the Bahamas, I carried an entire suitcase of catheters.  I mean who knew what would happen as we were travelling... or if we would be delayed.

There is the really raw part of disabilities such as these things that perhaps no one gives much thought to, unless you are a care giver or the one with the disability.  These things are real, and they don't go away.

When you rely on health care to LIVE not just survive, there is a great shift!  I promise!

I know many have experienced things as I am talking about, and that is why I am talking about them.

I look at so many young people with visible disabilities and imagine how life is for them... the daily tasks, the medical supplies, medicines and I also think about their caregivers.  And then I look around at our veterans and elders with visible disabilities, such as my dad, and it makes me more determined to want to not park in that space so that it will be available for them! 

I also think that my pride, yes I said it, my pride won't give in to the handicap word.  So if I have pride, why would I be writing this?  See, I am working on my pride!  I am working on humility in this disability.  I am trying to take this and turn it around.  There is nothing wrong with the word handicapped, there is nothing wrong with being handicapped... nothing.  I am handicapped.  I am living with major disablities but that doesn't handicap me from helping others and wanting to try my best to live, as I know it doesn't so many others as well.

This is where inspiration comes from, like the couple that had their first dance (blog post yesterday) as he was in a wheelchair!  I get so taken back by obstacles people overcome and I want to do that too!  I want to overcome every obstacle that I will face, as I have already overcome many.  I want to inspire others to do the same too!

I want to encourage the caregivers! I know it is hard!  I have seen my husband care for me and my mom beside my father's side for years!  You are so special!  You are appreciated and loved!

I want to encourage those of you with disabilities... if you struggle like me, don't give up!  Find something everyday to motivate you to help others.  In that, you will be helped! 

I am not sure how you are injured, what caused your disability or if you don't like the "h" word either, but I know life is hard when you are merely trying to live life the best to your ability after tragedy comes and takes what once was yours... strips it all away and offers you nothing in return but 200 catheters a month and a permanent handicapped tag! 

I will tell you that my mom (she loves yard sales) and she was at a yard sale last year and a woman was selling a large bag of male catheters.... (WHAT?)  yes, I said that... and she told the lady about me and the lady gave her that bag... well, when my mom handed it to me, I laughed a little and almost cried a little but was grateful I would have a "stash" to put away, you know for a hurricane or something... well, since my supply of 200 a month have run short every month, I have been using that stash... gasp, of male catheters from a yard sale!  Well, if that didn't just take my pride and knock it all the way down, I am not sure what will!  I even told my doctor with tears streaming down my face that this is what I was having to use until the insurance company would ship my order out... it just doesn't make sense to me, at all!  BUT I will say that those male catheters (please know they were still wrapped in medical sterile packaging! so no freak outs on me, okay?)  LOL!  were indeed a huge, huge FREE blessing!  That lady had no idea how blessed I was to have those in supply!  Today, I wait on my order, and today, I used the very last one of the yard sale catheters!  God's timing is pretty good!  Yes?

Now I anxiously await the arrival of my medical supplies, and pray to God for another blessing of catheters to have for when my supply is running out!  It is crazy that this is even an issue.  Crazy.

SO, see, people, I look like I have it all together on the outside... but in my purse I have been carrying male catheters from a yard sale because my insurance won't cover any more! 

If you can relate to anything on this post and have had some really bad days or frustrating times with your life and health care, I understand!  And I send to you all a great big hug! 

And please take the following advice and pass it on... If you ever see someone come out of a handicap stall that doesn't appear to be handicapped, be KIND to them!  You never ever know if they have yard sale catheters in their handbag! 

Have a beautiful day and as that sweet little girl said that suffers from progeria, "Be FABULOUS!"  I plan to! 



  1. Until I read your blog and saw your book, I honestly thought I was the only person left with a chronic disability from a pregnancy that resulted in child loss. Thank you for your post. Your words and faith in God are just what I have needed today. I struggle so many days just to raise my 2 living young children and I am not sure how I will survive but I know I will by the grace of God. I feel so many things that you write about. You and I are not alone in this anymore. Thank you.

  2. HI Jessica! You are definitely not alone! I survive daily by the grace of God and cannot imagine living without it. I send you great big hugs today with prayers of hope and healing as we continue to persevere under the circumstances that we have. May God give you great comfort today and in the days ahead! XOXO!!!