Waiting

I feel like I'm playing the waiting game. Though I am living my life every day.  It's a funny thing you see, loving someone I can not reaffirm every day.  Not being able to look at him and say "you are worthy of love" when really that's what he needs. 

See when we are together we have this way about us.  We are at peace with ourselves and our world. When we aren't, we play a game.  I love you, but we aren't together.  I won't tell you when I'm with someone else cause I can't take knowing when you are putting a place holder in my place.  Yes that's pathetic.

We both agree that if we were in the same place we would be together.  That if that happened, there would be no end. So how the hell can I stop the waiting game?

More DC

Random weekend pics from DC

I love my Susie for sending me these!!!  

DC is my favorite place in the world

Took this tonight.  I want to live here even more, every time I am here.  My heart feels so at home and I have a family who chooses to have me.  I love Susie and Jeff, they are so incredible and I thank God for them. 

Explaining Cystic Fibrosis, easily

This picture does not belong to me, but it does the best explanation of the disease in simple terms,  that I have seen.

Angela

The last few days at work have been nice.  Busy, but nice.  My dear Angela was back for the first time in 2 months.   She has been great to work with.  I've seriously missed her.  The two of us sound like a chorus of coughing bandits though.  We start to laughing at each other or some one else and the coughing starts.  I hate that she's so ill, but I will admit it is nice to have someone who understands.  She is a wonderful person with a great desire to live.  I have never met a person more deserving.  Watching her health decline, the hospital stays become longer and more frequent, I am scared. 

The fear I have for Angela, is quite selfish on my behalf.  Yes I am scared because she is my friend, a friend who I would not know my own personal truth with out, but I am also scared because I worry this is a glimpse into my future.  See, selfish.  More so, I am so scared to not have her there.  Not have her to text or send a message to, or call the moment that I need reassurance that our fight is not in vein. 

You see when I met Angela 3 years ago, I didn't like her.  Not because of her personality or her or for any reason in particular.  I was scared to get to know her.  I had lost a friend, Jared, many years before, to the same disease.  You see I have seen every bit of her illness before.  I have seen the transplant, the recovery, the before and after.  I also was around when he died.  I remember the pain we all felt, my beautiful friend Sherry in particular.  Jared was every bit the fighter Angela is.  So I did not want to risk the pain of getting to know her, becoming her friend, and losing her down the road.

Some where along the way, I have made friends with her.  She has helped me to learn so much, not only about life, but about Cystic Fibrosis.  She teaches every one she meets.  All along I have thought this process was just a disease that affected the lungs.  That is not the case.  It is so much more complex.  She is my angel.  I pray that she will continue to fight and be a light into our world.  That Angela will be strong and have a beautiful life.  I pray that medicine advances and Angela gets the life she deserves.  This is not a fight for the weak of heart, and Angela, has the strongest heart I know.

Love, Soul mates, and The One....

A friend of mine asked me a few weeks ago if I believed in love, soul mates and that illustrious "one."  It took me a while to answer her.  See we have been friends for a very long time.  So I thought long and hard on the question before I answered.  When I did, I wrote that yes I do believe in all those things. 

I believe that love is all around.  It presents it self in many shapes and forms.  There is the love that your family provides, the love that you get from true friends, and the love that presents it self in a rare form of that a partner provides. I believe that it ebbs and flows.  I think that love is precious and true love comes in a way that we don't always recognize.  Not every person you love will be that person you are meant to be with forever.  I believe we are able to love many people so that we appreciate that one person more when they finally do come along.

Soul mates.  Yes, I do believe they exist.  Those souls that seem to find each other in each life.  The people you meet that you feel that automatic pull to.  There is that feeling that you have always known each other and are completely comfortable with.  I have met exactly three people like this, and weirdly enough they are all linked.  Though, I met all three at separate times, I met them through each other. 

The one.  Yes, I am certain the one is out there.  In fact, I believe I know who my "one" is.  I had recurring dreams about him for years before ever meeting him.  I just thought this was a weird coincidence, that I had dreamed up my idea of perfect.  The details I could give you on these dreams was incredible. The only thing I couldn't tell you about him was his name.  But I could tell you every bit of what his face looked like.  Yeah I know, I sound crazy.  I might be crazy but the connection I have had with this man over the years is incredible.  Yes, I believe I know who my "one" is, and he is the one man I will wait for, if it takes a life time to get there.  I will wait through all his insecurities and be here when he finally realizes he's worth the love he deserves. 

Frustrations and more

There are days I just kinda want to crawl in a hole, under a rock, be left alone.  However, that never seems to happen.  My life is so hectic right now.  I feel like I haven't stopped in months, and by the time I get moved to Dallas, that will be the case. 

First was a three day trip that wasn't planned, to DC.  My Emily got married, and I was excited to be able to be there last minute.  Next was a planned weekend to Kansas City, to celebrate my dear Nikki's birthday, with a weekend of theme parks.  Next was, yet again unplanned, a trip to Texas to see family because of a death.  I was accused of just using this to see an extended family, because no one had talked to my aunt and uncle in 10 years.  Well the idiot that said that needs to check my phone, letter and email records, cause she's wrong, as she normally is.  I drove 14 hours, sorry if a 2.5-3 hour trip should not have been a huge ordeal for her.  I get home from that, and again I am going to DC, has been planned for a long time.  This time it is for the wedding reception and time with my Emily and Susie.  Soon as I get home I move to Dallas.  I feel like its non stop, but I'm blessed for all of this opportunity.

As you can see my trip to Texas was a problem for a family member.  A while back she told my brother she couldn't stand to be in a room with me.  Coming from my older sister, these words more than slightly broke my heart.  So when she confronted me and said I broke my 6 year old nephews heart, by being in Texas and not driving to see him, this made me explode.  I normally don't vent my family issues but my  therapist told me to find an outlet.  I let her know that the only reason he'd feel heart broken was cause she made him feel that way.  She said that he told her a month ago that all he wanted was mom, Matt and I to visit for his birthday, if that was true why didn't she say something? When I was bold enough to ask this question, I was told "well you are the most immature 31 year old I have ever met.  I could have told you but it wouldn't have made a difference."  Wow. Sure it would have I would have done my best to be there.  I would have taken an advanced leave to make sure to see him.  So I give up.  I love my sister but since I am this awful and immature person, I will just not acknowledge her belligerence with dictation to her.  She also told me our relationship was done.  Ok well if that's how she wants it.  I will still be here next time she decides to abuse me, I am sure of that, its how it always goes.

On a positive note, I have my friend Susie who I swear to God is my sister, from a different family.  I can tell her things that make me cringe and she never judges just listens and gives perspective.  She knows how scared I am of this process taking over my life.  She knows my hurts and my fears, my dreams and my loves.  There's not a day she doesn't start the day with checking on me. She is seriously a blessing and I can not wait to see her next week and hug her.  I may just cry. 

how to start...

We all know some one who inspires us.  Mine is a girl named Angela Kohring, Angela is a Cystic Fibrosis patient.  I work with her part time at my vet clinic.  A few months ago she and I sat down and were comparing notes, more like Angela was taking inventory.  See over the last few years I have been sick more often than not.  I would have these symptoms and go to doctors, nothing would come of it.  In the last 6-8 years I have had bronchitis and pneumonia so many times its ridiculous.  I have stress seizures and more often than not, eating is a joke. 

I wake up in the morning and am nauseous til after noon.  About the time I start to feel well enough to eat, my stomach rejects the food.  I lost more weight than I want to admit, considering I am tiny with out these issues.  I was/am chronically constipated.  Have ongoing sinusitis and migraines to rival getting hit by a sledge hammer.  I can sleep for hours on end and still be tired, and did I mention the nausea.  Lets talk about the coughing, its like some one is beating me.  I cough violently, and constantly.  I feel like some one has set weights on my chest, taking a deep breath is painful.  I tell all this to doctor after doctor and they say nothings wrong, just deficient in vitamins A, D, E and K, Potassium and Calcium.  So I take a ton of vitamins daily. 

So one day I am talking to Angela and she says shes emailing her CF nurse practitioner about me.  Next thing I know I am set up for a sweat test and Xrays.  Testing for cystic fibrosis.  I also got approved for genetic testing, but did not come up positive for any of the most common genes.  My tests were so close to positive that I was diagnosed as adult onset Cystic Fibrosis.   Now I never knew this was a possibility.  I have had issues breathing my whole life.  Had been told years ago that I had asthma from all the lung illnesses, so basically residual from not being able to heal. 

Now I am on enzymes that I have to take with every thing I eat, so that I can digest food and get any nutrients out of it.  I take anti nausea medication, about 14 vitamins a day, and my favorite part, clinical strength laxatives, which don't always do the trick.  I keep an inhaler on me and cough like a crazy person.  I actually had a lady get up and move away from me the other day in a class cause she thought I was gonna get her sick.  It was embarrassing.  The cop teaching asked me if I was contagious, I had to explain it to him.  He was appalled that anyone would be afraid to "catch" my illness. 

Because of Angela, my life has changed drastically.  Shes fighting this disease at a much more complex stage, with so much more grace than I could imagine.  Each time she checks in the hospital, my heart breaks a little more.  How can some one so full of life and love be hurting so much?  She teaches every one around her so much about this disease, constantly educating the people she loves, and touching the lives of every one she meets. 

How can I repay her for possibly adding years to my life?  I don't know, but I do know I will honor her with every fought breath I take for the rest of my years.  She is my angel, she is my strength.  I am grateful God gave me this angel who does not yet have wings.  I pray that she gets many more years and that she lives her dreams, if any one deserves it, it is her.