So your health is like an everyday thing?

This was a question posed to me yesterday and I will have to admit while it made me smile it also led to some real frustration.  My initial internal response was not gracious...however, the Lord gave grace to respond with “yes, it sure is and I would really appreciate your prayer.”

One of the toughest parts of a chronic illness is that it is in fact an everyday thing.  For some, it could just be as simple as a daily medication, for others, like myself, it could mean up to 4 hours (more when on IV’s) of maintenance (that means that my health is really a part time job). This is not something that I can choose to take lightly.  4 hours....that means that I have to strategically schedule out each day, sometimes choosing to say no to things I would love to do in order to maintain my health.  This means that my friends understand that at the last minute I may have to stay home in order to get on top of something before it gets out of hand.

As you have opportunity to interact with those that have been dealing with a chronic illness, seek to interact with understanding.  An understanding that what you see is really only a snapshot of the big picture, an understanding that flexibility on your part is such a gift, a desire to gain a glimpse into the reality of this everyday thing.

Friday Fill-in

1. Memorial Day-a special thank you to those who have served or are serving us and our country.  I am so thankful for the freedoms that you have afforded me
2. Celebrations are awesome-Happy Birthday to Mom and Kyle
3. My dog makes me smile
4. I could do just fine without three digit temperatures
5. Missing out on branding tomorrow-bummer
6. This long weekend I look forward to sweet food, fellowship with friends, as well as time with my honey.  Happy 13th Sweetheart!

Clinic 5-21-2010

I had a clinic visit on Friday. It can be summed up in one word-frustrating.  For a while now I have been struggling.  My PFT’s have been on a roller coaster this semester.  They are down once again.  Urghh! There is no clear reason as to why they should be down.  I have already been on two rounds of IV’s and that doesn’t seem to be the right solution at this time.  

So, lot’s of questions.  What is happening?  Are we missing something big? What could be causing these drastic declines?  The doc is actively pursuing trying to get my asthma component settled down and then researching if it may be something fungal.  So more tests and more questions.  Good thing I know the One who is in control of it all-down to each minute detail. I choose to rest in Him.

busy, busy, busy

This time of year can get quite crazy!  Between concerts, graduation, grad parties, weddings....whew, we sometimes find ourselves coming and going.

Here are some pictures of what we have been doing.

IBC Fine Arts Concert

Chandler Children's Choir Concert

Practically Relevant

A mom of a young CFer posted this today.  Her son, Conner, who is 7, is not doing well at all.  She speaks about what they need from friends right now.  I really appreciate her transparent honesty.

Here is her post;

don't stop talking to us....

this is a wierd topic...but i feel it's an important one. and this is not just about me or my husband, but any grieving family...because once upon a time, i was on your side of the fence not knowing what to do or what to say...but now i feel i can help you all understand a bit from my new side of the fence...

(once again..not about me...about every grieving family)

please don't ignore us.

don't not talk to us simply cus you don't know what to say.

saying nothing adds to our pain.

because ignoring us makes us feel isolated and neglected and unloved.

it really hurts.

the dumbest question to ask is "how are you doing?" or "how are you feeling?" because the answer is obvious...and it kinda seems like you just want to hear "ok" you don't really genuinely want to know about us...

instead a better question is "how is today"

don't say "let me know how i can help" or "can i help" just find something no matter how small and do it. because if others are anything like me...asking for help is a very hard, learned process and i'll always say "i'm fine" even though like today i'm drowning...

the best way to describe it is that we're not really sure how people best like to help, so when someone says can i help you...you're unsure if they mean cook a meal, mow the lawn, watch the other kids etc...so just offer what you'd like to help...because we want the help but are not sure what you want to do to help....

men are mr. fix it's by nature...and when they can't fix something like a child dyeing they walk away. and thats a huge slap to the face. we don't expect you to fix it. because lord knows we've already tried to. we just need the bond to remain open.

it's perfectly ok to not talk about the situation sometimes...infact a welcomed distraction is great, laughter goes a long way...but don't, not talk about it at all like it's the elephant in the room. 

if you don't know what to say simply say that...because honestly...we dont know what to say either. this is all new to us as well...

but by not saying anything, we interprit that as not caring. 

and that adds to our pain.

losing a child or husband or whatever the circumstance is painful enough, but add to it losing what you thought was a close friend, thats just fuel to the fire.

one of my dear friends has been reading books about grieving to help us thru what we're facing and i thought that was a great idea! i wished i had thought of that before...so if you are genuine then maybe find a good book targeted at grief and loss and read up...it'll explain best just how we as grievers are feeling and give you good ideas of topics to talk to us about.

so anyway...the only reason i'm writing this is because i wished i had this information before in my past relationships that suffered loss...not because anyone is making me upset or anything..

love

sarah

You can find more about Sarah and Conner at her blog http://notsobrightandshiny.blogspot.com/.

Faithful to His Promises

One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord.  With that in mind, I have collected verses that reflect His promises and meditate on one each week.

     Here is the verse for this week.

Psalm 118:8

“It is better to take refuge in the Lord
than to trust in man.”

Awkward!

So, Friday I had to run out and pick up some fabric at a nearby store.  As I had mentioned previously, I have been fighting a cough that is just a pain.  I have found that I specifically cough when I get overheated.  Of course, I was in a hurry and had rushed through the store only to get in line and start coughing.....and coughing....and coughing.

Now usually I can handle this ok, but this morning I was especially sensitive to those that were around me.  The line was long, my cough was persistent and the “covert” looks were coming.  Have you ever felt like making a general announcement to the whole world? “No, I am not sick and you cannot catch this!” So there I stood, coughing and wishing that I could just disappear.  I thought it a victory by making it through the line without being offered a cough drop or asked “are you okay.”  Phewww!  

Mother's Day

So, Sunday was Mother’s Day.  I wanted to share how thankful I am for my mom.  I praise the Lord for her and her impact on me and my life. Thanks Mom!

Mother’s Day also brought to mind a topic that may be difficult for some with a chronic disease.  That of becoming of a mother but not being able to.  I know that there are ladies that really dread mother’s day because of their strong desire, yet inability to have children. This can be a day that is filled with emotional pain, even bitterness.

Primarily I want to share that being a mom does not make you complete.  Our fulfillment, our identity as women is found only in Christ. Our greatest joy can be found in Him alone. Yes, there is a desire, a want, that may go unfulfilled.  It is ok to mourn the loss of that blessing. Mourn the loss and then open your eyes to the abundant blessings He has given and opportunities that lie ahead for you.

Yes, I understand that for some this may be a longer endeavor than for others.  Let me challenge you, though, that it an endeavor that is worth embarking on.  As you discover your fullness in Him, there is joy and peace to be found that is beyond description.

Here is how author Wendy Alsup puts it;

“...believe in confidence that God in this very moment loves you with a deep love. You may feel estranged from Him, knowing that He has the power to give you that sweet infant that He has given so many around you. It seems like He is dangling a desire in front of you, teasing you with it. But understand that unfulfilled desire is a tool He uses to give you even better things – things of Himself that you cannot know in easy ways. Believe in confidence that this time of waiting is not just a holding pattern with no discernible value, but it too is a blessing, albeit in disguise, as it increases your strength to run and not grow weary and to walk and not to faint. Wait on the Lord, dear sister, in confidence.”

A Scare

Last night I had a scare.  

Lately, I have been struggling with coughing spells.  I am unsure if it is asthma or allergy related, but they happen none the less.  Anyway, got into one of these spells-looked down and there was blood.  Oh great....I thought, it’s my first bleed!  Fortunately (and thankfully), it was not.  Turned out that it was just a bloody nose. 

CF Awareness

Well, as the title has so cleverly stated....May is Cystic Fibrosis Awareness month.  So, I would like to take the opportunity to make you aware of some things; things about CF and things about a person with CF (aka-me).

CF is a genetic disease...you can’t “catch” it.  Neither is there a cure at this time.  A cure would have to come in the form of changing a specific gene. The docs focus on treating symptoms.

CF affects more than just the lungs, it affects any mucus producing systems.  So, for example, it affects my digestion, sinuses, etc.  I also have CF-related Diabetes.

CF is progressive in that someone continues to get worse.

CF is chronic in that it never goes away. This is a tough aspect-you can never take a vacation.

Fighting CF is a team effort with the whole family and many friends involved.

Many CFers spend between 2-4 hours in daily treatments when they are “healthy” and 6-8 hours in daily treatments when they are fighting viruses.

CF is sometimes represented with 65 Roses.

CF is the most common, deadly genetic disease among caucasians.

The average projected lifespan of CFers is 37.

One of the best places to get information on CF is www.cff.org

I take between 25-30 pills each day.

It is really nice when you don’t notice my cough.  Coughing is actually good for me b/c it moves the mucus from my lungs.  

If you are sick, most likely I will be really careful about how close I come.  I can pick up new bugs easily.  I already have plenty...I don’t want yours too! :- )

Purple is the CF “color.”

Okay, this is not an exhaustive list.  Please feel free to add your .02.

Faithful to His Promises

One of the habits I am actively seeking to incorporate into daily life is focusing on the truth of my Lord.  With that in mind, I have collected verses that reflect His promises and meditate on one each week.

Here is the verse for this week.

      John 1:12 " But to all who did receive him, who believed in his name, 
                           he gave the right to become children of God."