An Open Heart Journal

Thoughts from the heart of someone trying to faithfully keep the "Light" from burning out or being "hidden under a basket." These lessons are the result of a daily walk and challenge of living through heart disease. This is both a blog about my physical experiences and the spiritual implications and lessons learned. May you, too, learn from what I have learned - and in an easier way. These words are truly "From My Heart" to you.

Sunday, July 26, 2009

I'VE MOVED

Well, in my attempt to change the appearance of my blog header somehow I ended up with a whole new URL for my Open Heart Journal. So please accept my apologies for the confusion and go to: www.kathleensopenheart.blogspot.com to find the most recent blogs. If you have signed up to follow me on this address please continue following me on the new URL as I will no longer be posting here.

I'm really glad that you found me here and I do hope you will visit the "new" web page and become a "follower."

Thanks,

Kathleen

Monday, July 06, 2009

A GAME OF TAG - A FUN DIVERSION

AN OPEN HEART JOURNAL
July 6, 2009
A GAME OF TAG - A FUN DIVERSION

Way back in January while I was dealing with my first heart attack and getting ready to receive 7 stents, my dear Sister-in-law, Sharkbytes started a game of "tag" on her blog. Being fairly behind for obvious reasons I just saw the blog this morning and noticed that I was tagged. So I'm playing a little catch-up and enjoying the fun diversion since I'm just coming off a real bummer of a weekend and need something else to write about than how bad I feel at the moment.

Here are the rules:
1. Link to the person or persons who tagged you.
2. Post the rules on your blog.
3. Write six random and/or revealing things about yourself.
4. Tag six people at the end of your post and link to them.
5. Let each person know they’ve been tagged and leave a comment on their blog
6. Let the tagger know when your post entry is up on your site.

I might have trouble thinking of six people to tag but I'll do my best.

SIX RANDOM THINGS ABOUT MYSELF

1) I love watching the "G4" Channel on cable TV. I especially love Unbeatable Banzuke which originates from Japan and has the wildest physical challenges you'll ever watch. My favorites are the unicycle and hand walking obstacle courses. I would has SOOOO done the Unicycle challenge had there been such a thing in the 70's!

2) I tasted my very first beer at the age of 54 and I was surprised that I liked it. But I haven't had one since but I admit that's only because my dozens of medications won't even allow me to enjoy an occasional glass of wine. Yep, I've strayed from my Baptist roots.

3) I came very close to joining the Navy while in college. I went as far as visiting a recruiting station after stopping at a booth at the Tulsa State Fair in 1972. This was a new push to recruit women for the Navy and I wanted in. They even had a special camera that showed what I would look like in the newly designed women's uniforms. A month later I got engaged and ended my pursuit of Navy life.

4) I always wanted to be on a game show - preferably Pyramid, Password or Wheel of Fortune. The one time they were having try-outs for Wheel of Fortune in this area I was in the hospital. I have to be content playing word games on Facebook instead.

5) I have a Build-a-Bear named JB Dimples that my Son and Daughter-in-love gave to me in 2005 when I had my first lung surgery. JB has been in the hospital with me every time since then (12 times) and has several outfits including surgeon scrubs. More nurses recognize JB before they recognize me now.



6) I once participated in Sumo Wrestling but was knocked over in the first 30 seconds and couldn't get back up without three people helping me.


MY SIX TAG LINKS

MY QUALITY DAY - A Daily blog about things that make "a quality day" and always makes me smile and often laugh. This is one blog worth going back to the beginning and ready every post.

A JOYFUL HEART I'm picking on my sister this time because she needs to update her blog. She's just returned to the states after 8 years of missionary work in Brazil and I hope she picks up blogging again once she stops traveling every week.

POCKETREVOLUTIONARY.COM My son might hate me for this but I''m a Mom and I'm really proud of what he does. This is mostly a techie blog but many of his posts are so funny that even the non-techie will appreciate his sense of humor. And if you have a son (or daughter) a part of that computer geek generation you might just learn something about what they do in their spare time.

That's all the blogs I read but I'm willing to accept invitations so if you have one. please let me know. So I might be 7 months late, Sharkbytes, but I've had fun doing it.

Monday, June 29, 2009

HOW CONTENT I'M NOT...AN HONEST CONFESSION

AN OPEN HEART JOURNAL
June 28, 3009
How Content I'm Not...An Honest Confession

When I took a Summer School Course on "Prison Epistles" while in Bible College I had one major assignment and only 6 weeks to complete it - memorize the entire book of Philippians. For the next six weeks I listened to Philippians on cassette tape so many time that I wore out the tape.

Philippians 4:11 boldly proclaimed, "Not that I speak in respect of want: for I have learned, in whatever state I am in to be content." To a starving Bible College student this verse was a little hard to swallow (pun intended). But since I was memorizing the entire book and was required to hand write the book within a one hour final exam I couldn't help but notice the verses before and after this seemingly illogical declaration. Previous to this statement is, 4:8 "Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. 9 Those things, which ye have both learned, and received, and heard, and seen in me, do: and the God of peace shall be with you."

Herein lies the secret to contentment: Thinking on only those things God wants us to think about and taking our eyes off anything not in this list. Contentment is the result of right thinking which leads to the Shalom (peace) of God being with us.

Can I make a painful confession here? I am not content. Gradually, over the past two and a half months I have grown less and less content. I'm not happy or proud of where I have recently found myself. But I need to work through this sobering discovery and I'm going to do so right in front of you, my trusted friends and family.

When I first got out of LifeCare Rehabilitation Hospital in March I felt the best I had felt in several months. I could walk fairly easily even though I used a walker, I was looking forward to returning to my apartment, driving and taking care of myself. I had visions of returning to Cardiac Rehab and finishing the 12 weeks I started last January, of cooking great meals for my roommate every night, maybe even getting a bicycle and getting some exercise outside. Yes, I can see some of you shaking your heads - especially those of you how understand heart disease much better than I did then. I had doctors who are hopelessly optimistic and I had gauged my progress by things they had said.

Unfortunately their optimism didn't take my unique heart disease into consideration and it wasn't long before I peaked in energy and accomplishment then slowly began a sad, painful decline. The truth is everything I am dealing with (except the drooping eye lids) is internal and I strive very hard - and use my large collection of Bare Minerals Makeup - to never leave the house without looking my absolute best. Frankly, I am constantly told how great I look and I take it all in and cling tightly to those words. Sometimes I look in the mirror and if I look good enough it is easy to forget just how sick I am on the inside. That is, until I begin to stand up and walk across the room. Then the shortness of breath and the pain in my chest is a "slap in the face" reminder of where I really am.

Last week I heard a third doctor tell me, "Kathleen, I've never seen a heart disease so advance or as aggressive as your during my entire medical practice." Translation - "We don't have any idea what to do with you,"

Oh, I know - I hear you saying, "Kathleen, whose report will you believe?" I'm not discounting God's ability to turn everything around but neither do I have to hear something like that from a doctor to tell me my heart, lung and kidneys are failing. I know it every time I take a breath, take a step, or take a walk. Is there any of you who has suffered great pain for a long period of time who has honestly been encouraged by such a platitude? At the risk of offending you, let me tell you up front that platitudes or misquoted Scriptures do not ease physical pain. I'm a firm believer that through the years more people have been made to feel guilty for being sick than have been helped or encouraged. If I can do nothing else with my life may I please be used to teach people how to avoid sounding like "friends of Job" to those who are suffering physically and for one reason or another not experiencing God's healing in this life.

What does all of this have to do with not being content? Because in the course of my physical life growing gradually weaker and increasing in pain I know that I have lost sight of those things that are "true, honest, just, pure, and lovely, of good report..."

I have figured out that my brain is stuck on a mental picture of myself that is in direct conflict with the reality of my physical condition. When I am sitting or laying in bed it is very easy to visualize myself cleaning my room, making lunch, doing laundry, cleaning out the closet or driving to Sonic for a Diet Cherry Limeade. But as soon as I stand up and find myself dizzy or short of breath and have to sit down or risk passing out those mental pictures become broken dreams.

Two months ago I could safely drive myself to the grocery store, take myself to my own doctor's appointments and walk through WalMart for an hour (with my fancy walker) and even carry in my own groceries. Now I need help getting to the doctor and each time I go out I hae to stay down for two days just to recover even the shortest jaunt "outside." I've spent this entire weekend 'at home' and yet I still feel like I've run a marathon. Not only have I been losing ground since I first left LifeCare in March but my hospitalization at the end of May left me much weaker and unable to do very little without constant help. I might forget for a moment and start to think I can drive myself down to the bank or pharmacy but as soon as I begin to leave the apartment I am stopped by my own shakiness.

Because of this slow digression it is easy to catch myself dwelling on all the things I can no longer do or will never do again. A Coleman commercial on television reminds me that my camping days are permanently over. A Six Flags ad reminds me that my last ride on the "Superman" ride three summers ago was my last. Are these laments true? Yes. Honest? Yes. Just? not really (in my eyes) and they are certainly not pure or lovely - and contentment goes right out the door.

I will not find contentment concentrating only on the possibility of my healing but on focusing on those things that are EVERYTHING Philippians 4:8 lists. We cannot cajole anyone into their healing by carelessly quoting Scriptures or platitudes. That is exactly what Job's friends did and in the end their voices (and I think their ears) were silenced by the booming voice of God who boldly asked Job dozens of rhetorical questions that all had the same answer - God and God alone because He IS Sovereign - period.

And what about the statements Paul makes directly after his declaration of being content? It is here where we find a very familiar verse: 4:13 "I can do all things through Christ who strengthens me." This is a great verse to memorize in Sunday School as it is short and to the point. But just what constitutes "all things?" We find the answer to that in the statement between verses 11 and 13: 12 "I know both how to be abased, and I know how to abound: every where and in all things I am instructed both to be full and to be hungry, both to abound and to suffer need." How many times have you actually heard verses 12 AND 13 quoted together. Somehow "doing all things" sound a much different when proceeded by words like "abased" and "hungry" and "suffer need." I am a big believer in keeping things in proper context. Paul didn't write the book of Philippians in chapters and verses - he wrote it as a letter and each sentence was connected to the one preceding it and the one after it. If we are going to truly "do all things through Christ who strengthens us" we are going too have to first "think on these things" AND also learn how to be both "full and hungry" and content at the same time. Tough assignment but great rewards - "and the God of peace shall be with you." (4:9)

I can think of only one statement that is true, honest, just, pure and lovely and of a good report all at the same time. "My God, the Holy One of Israel, is Sovereign and in conplete control no matter what my circumstances may feel like, look like, sound like or end like." When I lose sight of this then I lose His peace and I am no longer "content in whatever state I am in."

Frankly, I'm not learning this lesson too quickly. I still wish I could fly up to visit my brothers, drive myself to Sonic, cook gourmet healthy meals for myself and my roomie, go water skiing, ride a bike, walk through the mall and camp by a campfire and set marshmallows on fire. I seem to miss doing more things this summer than I have even attempted to do for the past five summers put together but I guess that is because we rarely miss something until we can't do it.

So, while your praying for God to heal me - which I DO believe He can do - would you please pray that I will regain my peace, the Shalom that passes all understanding. And would you please consider how you write and talk to friends who find themselves enduring physical or mental challenges that seemingly have no end. Ask yourself and the Lord if your words will bring hope or additional pain.

We are living in a new season in these days. An oppression hovers over whole communities - especially those with mosques. Much of the true Remnant find themselves in the midst of painful and often confusing circumstances. If you are not one of them, then please do more than sigh a big sigh of relief. Please commit to reaching out to those who are hurting without words of condemnation because I'm sure there are many around you who are truly suffering. And before you speak or "bring a word" or send a card go to the Lord and humbly ask Him what you should and should NOT say.

There is much that needs to be done for Believers in these days - be sure that what you feel "led" to do lines up with God's will and not man's agenda.

I may be down but I am NOT destroyed. And yes, I do believe I will see a restoration of my peace and my joy - and I will be sure to share that day with you. In the meantime, if you too find yourself discontent then evaluate what you are focusing on. And if you know a friend who is struggling then ask the Lord how you can be a positive encouragement rather than a verbose discouragement.

I look forward to having my contentment restored - I believe that it is as close as my mind.

From My Heart,
Kathleen

Thursday, June 18, 2009

HARSH REALITIES OF HEART DISEASE

AN OPEN HEART JOURNEY
June 18, 2009
HARSH REALITIES OF HEART DISEASE

Dear Friends:

With my browser set at 24 point sized font and constantly titling my head "just right" I'm typing this hoping I'm not typing any words that would embarrass me. I'm learning, the hard way and five months too late that heart disease truly is a systemic (multi-system) illness. Today my ophthalmologist said that the same thing that is happening in my heart is happening in my eyes. And the bad news is that it can't be stopped and will never improve.

Today I went in expecting laser surgery on my right eye but five times I heard "If the doctor decides to do the procedure/" I was confused from the beginning. Then he explained, after looking at today's scan that the desired result of reducing the swelling was accomplished with the precious steroid injection. But neither the laser procedure or the injection improved my sight which means that what I have left in my right eye is all I can hope for. And because my blood pressure is not under control it will continue to worsen.

So then I mentioned my left eye and that ever since my recent hospitalization and several days of overly high blood pressures I have been having problems reading, seeing small things like my pills and reading on the computer. So it was back into the "photo" room and more tests with dye were done on the left eye. When the pictures were compared to ones from seven weeks ago it was evident that the swelling was indeed increasing in my left eye.

This swelling is fluid and lipids (fat particles) that enter the eyes from leaks in the blood vessels. Imagine the eye like a basement filled with pipes for a large apartment building. When those pipes begin to leak in hundreds of different places the basement begins to fill - and this is a picture of my eye. The laser procedure doesn't stop the bleeding like I was told back in March it only reduces the swelling so I'm not looking through the extra fluid and floaters (lipids) that look like hairs on your eyeball.

The solution today was to try to stop the same deterioration that is in the right eye to happen in the left. In other words, catch it before it is too late like it turned out in my right eye.

When the doctor said that what is happening in my heart is now happening in my eyes he meant that my eyes are no longer getting the proper blood and oxygen supply but unfortunately they can't put stents in eyes like they have my heart.

My distant vision is still okay in my left eye but I've lost more of the near vision which affects my computer experience and, of course, reading. I guess a large print subscription to Reader's Digest will be next on my Amazon.com wishlist.

The loss seems to be slow - which is good. And for now there are some simple solutions like increasing the sizes of my fonts, etc. But it is all still disconcerting especially when I can't properly proofread what I have written and I can't see the think red line under misspelled words.

I'm learning to fill my time with things I don't need to seem perfectly to accomplish. I've started crocheting again this time making hats and shawls since I am always cold. And I play card games like Quiddler which I can easily see even without glasses.

Next Tuesday (June 23rd) I will be having appointments with my Endocrinologist, Cardiologist and Pulmonologist on the same day. It may be grueling but it couldn't be helped because of strange scheduling. But there will be some tough discussions about the future, oxygen treatments, air and car travel and a plea for an honest and clear prognosis. Please pray for me AND the doctors as some of these discussions will be difficult.

So this is what the most "advanced and aggressive heart disease ever seen" by my cardiologists looks and acts like. It doesn't restrict itself to the heart and in my case it has already affected my kidneys (and vice versa), my lungs (and again vice versa) and now my eyes - a fact I never knew nor expected. Somehow losing my eyesight is more frightening to me than even losing my life. I know that must sound strange but it is just very difficult to imagine life without seeing even though I know millions of people do so every day.

It is a harsh reality and once again I feel pushed up against a wall of hard acceptance. I only have one prayer request - that I do not lose Faith. That is more important to me than even my sight.

If you've read this far and concluded that I have given up hope of being healed, let me assure you that is far from the case. But I have no problem with stating the truth of where I am physically which still believing in a God Who is sovereign, loving, all powerful and not a tormentor. I will not go into all the reasons I believe I am where I am right now but I will state without meaning to sound arrogant or haughty that I DO believe God heals and I have both seen and personally experienced His healing power in my own life. But I also will not live my life in what I call "spiritual denial" by refusing to admit to or speaking of my physical challenges and weaknesses. Paul asked his followers to not be ashamed of his chains and I am asking you to not be ashamed of my illness. I will write more on this later.


From My Heart,
Kathleen
--

Friday, June 05, 2009

THE PURPLE HEART


AN OPEN HEART JOURNAL
June 5, 2009
THE PURPLE HEART



My sister has always been the one in the family to find that "perfect" gift for her siblings. I think I can safely say that each of us has received some of our most valued gifts from her and wondered where in the world she found them. Over the years she's given me my favorite clothes (starting with my very first pair of blue jeans back in 1970), my first haircut when I was 11 and 90 percent of my earring collection. But this year I think she topped them all. She gave me a Purple Heart. Now it would have been enough that the pin is 1) my favorite color being purple and 2) my favorite shape being a heart. But this pin was attached to a card with a special poem written by the same talented woman who made the beautiful pin.

Here is what it says:

DID YOU KNOW?

Some women deserve a purple heart -
Those who struggle through adversity
One foot in front of the other
Who smile when one would expect tears
Those who find the cup half full and are thankful
Those whom you can count on...
Can turn to...
Who make our lives richer!
Women who are survivors -
Remarkable and warm
Who make the world a better place
Just because they're here
Did you know YOU are one of those women?

-Norma Marshall ©2000



Yep, I cried - right there in that nice fancy restaurant. But how many of you are doing the same thing right now? Our friend at the table has offered that once I'm tired of wearing it and showing it off she'll frame it for me. Only if she can pry it out of my hands, that is!

It's not that I want to show it off because I think I deserve it but that I want to hold on to it because my SISTER thinks I deserve it. And yes, I'm crying again right now just thinking about it.

But I have to say that I know a lot of people who also deserve a purple heart this year:
° My roommate who works 12+ hour days, five days a week as a cardiac nurse then comes home to another heart patient and gives whatever energy she has left to lovingly make sure I have my meds, food to eat and anything else I might need, listens to my honest, tearful fears and complaints and then lovingly and patiently turns my eyes to the Creator of the Universe and Ruler of our lives so I remember Who really is in control when I am terrified that no one is.
* My son who has sat by my hospital bed countless days, rushed to the ER, endured hours of waiting room hours through no less than 5 heart procedures and open heart surgery even while losing his own father from an embolism right in the midst of my own health crisis.
* My beautiful Daughter-in-Love who declared to my son "You take care of your father's estate and I will take care of your mother's affairs" and lovingly walked me through mountains of medical bills, Social Security forms and treated me as lovingly as her own mother both in and out of the hospital (Not to mention has spoiled me rotten for my birthday)
* My brother Jim who kept me laughing with his wonderful sense of humor and talent for describing hospital life to a tee.
* My big brother who had his own heart issues just the year before and inspired me with his 100 mile bike ride on the anniversary of his heart attack.
* My sister who made the drive from Little Rock several times to visit me in the hospital, endures my beating her in word card games and challenges me to Word Twist just to keep me mind from vegetating.
* My friends who have become even closer friends through these months and visited me with fluffy slippers, sugar-free chocolates, healing music CDs, a collection of stuffed animals and most of all their prayers - both when I knew they were praying and more importantly when I never knew but definitely felt them in my "heart."
* My many fellow employees at work who fought for me when the company denied disability benefits, collected monies to cover the cost of my health insurance, brought me meals, took me to doctor appointments, visited me in the hospital and made me laugh so hard my blood pressure soared and the nurses had to kick them out of my room.
* My many friends who stuffed birthday cards with generous checks that will greatly help with ongoing medical and personal expenses and sometimes specifying that some portion be spent on me as well.
* My dear friend in the corporate benefits office who cried every time she had to deliver bad news about my denied benefits and even made sure my monthly COBRA payments were paid when I had no resources to do so for myself.
* My many Facebook, email and chatroom friends who have written, read, commented, loved, prayed and supported me through this long, never-ending journey. You have kept me from feeling alone when there was no one in my hospital room, you've tolerated my competitiveness in online word games and you've made me laugh when I really felt like crying. And every time I thought about giving up I could look on my Facebook page or my email address book and see that I had 100+ friends cheering me on and know my world wasn't as small as it seemed in that closed-in hospital room - even at 3 in the morning.

So, purple heart to all of you - and my HEART-felt thanks.

I love you all and thank God for each one of you. I celebrate our friendship and commit to praying for you just as you all have prayed for me. I have a screen saver made up of pictures I've titled "Things that make me smile" and in that folder of pictures are pictures of you guys that I've take from your FaceBook pages. When my screen saver goes on it stacks each picture like being tossed from a scrapbook and I do truly smile. You are each in my "things that make me smile" folder.

Thank you - I can only pray that someday I can return the love your way.

From My Heart,
Kathleen

Sunday, May 31, 2009

IS EIGHT ENOUGH?


AN OPEN HEART JOURNAL
May 31, 2009
IS EIGHT ENOUGH?

Well, I'm back home after my very shortest hospital stay. Recovering from my fourth heart cath and the owner of another stent bringing the total to eight. I was a lot less sedated this time and actually had to endure the 6 hours of laying still without sleeping through it so it was a totally different experience this time. As I was waking up in the surgical room I thought the doctor was just beginning but he was really finishing up - oh how I love the drug "versed."

So now I have eight stents - the last one inserted inside a previous one. The doctor says that as my heart disease continues I could need more just to keep the blood flowing. Obviously there will come a time where there is no more room. He sadly told me I was truly their most challenging patient ever and I'm thinking, "well, here I am again as the most "unique" case in the group. The story of my life." The heart disease is well advanced and aggressive and nothing can be done now to stop it. And even though there was evidence of new collaterals (blood vessels) growing it won't be long until they succumb to the progression of the disease as well. The medical challenge now is balancing the treatment of the heart and the kidneys because the medicines often conflict each other. But my cardiologist says that the heart will always trump the kidneys. There is also the problem of distinguishing my chest pain between the chronic can't-do-anything-but-live-with-it pain and pain that indicates a stent or something else has gone very wrong like what happened this week. But the doctors admit that even they don't know how to tell the difference.

More than once this week I have been asked, "So how are you feeling about all of this?" and I really haven't had a response. To be honest I'm mostly in shock. I wasn't surprised that there was something serious wrong when I went to the doctor on Tuesday. In fact I came very close to taking a packed "hospital stay" bag with me thinking that I was going to hear "We need to put you back in the hospital." But when my Cardiac RN roommate tried to reassure me that she didn't think that would then I wrote it off as my overactive imagination. I wish I had been wrong.

I guess mostly I am numb. And when I am not numb I am dealing with anger which is so rare I hardly know what to do with it. I'm angry because once again I've lost control of my life. There are things I want to do, places I want to go, people I long to visit and none of them are possible right now. And just this week I've had to hear the word "no" to somethings I actually begged God for and frankly I didn't really handle it well at all.

One thing I learned when I was very ill several years ago is that handling disappointment is one of my biggest weaknesses. This tends to be a problem for most people with terminal or chronic illnesses because anticipating anything different from laying in bed or being stuck in their homes is a major form of having hope. The simplest of things - a visit from a friend, a trip out for lunch, a movie can all be things that you look forward to for days. I read about this "anticipated hope" in a book instructing friends and family how to help their terminally ill companions. Then I understood why a cancelled visit or trip out of the house was so traumatic for me. I tried to politely warn my friends to not make plans with unless they were very sure they could keep them.

Of course, I know this doesn't absolve me of the responsibility to respond maturely and trust God when things fall through or are postponed. But unfortunately, it just takes me a while to calm down - and eventually I do.

But why is it hard? Because for people who are dealing with a terminal or chronic illnesses are faced with losing control of their lives every day. Sometimes this happens gradually and other times overnight. Being in the hospital puts a patient on a whole new schedule and they are suddenly told when to wake up (usually at 4:00 a.m. for blood tests and vitals signs), when to eat, when family members can visit and when they have to leave, what to wear and even if you can wear your underwear or not. Sometimes the only things you GET to choose are the TV shows you watch and maybe your menu to some degree. When you get to actually make a choice of something you relish the opportunity.

Being home doesn't always make this any easier because there are medicine schedules to follow, new diet guidelines, many activities no longer allowed and trips out become less and less frequent - if at all.

And here is where I find myself. Unfortunately, knowing why it is hard is not helping me pass the test too well. I'm losing more and more control of my daily life and I'm kinda like the puppy that only remembers that he used to fit under the coffee table and can't get used to the fact that now he's too big now to get under it.

In my mind I can still go where I want, when I want and stay as long as I want. The reality is that I can't make a three hour road trip - let alone the 10-12 hour ones I did just a year ago. I can't go to the grocery store AND out to lunch on the same day. And I can't make plans to go across the country to visit family and friends at my own schedule. And this leaves me the most disappointed because I am longing to visit family, friends and places this summer but instead must face and accept my new limitations - with great disappointment.

So, be patient with me friends. I'm really trying to adjust but it's coming very slow for me. I hope you don't have to observe one of my meltdowns - I'll try to keep them hidden behind closed doors.

From the Heart,
Kathleen

Thursday, May 28, 2009

YOU NEVER KNOW...




AN OPEN HEART JOURNAL
MAY 28, 2009 3:30 a.m.
YOU NEVER KNOW...

It's three-thirty in the morning and I have only been able to sleep for about three hours. The hustle and bustle in my room with blood transfusions that ran too late, chest pain, and thinking about what's coming in a few hours are keeping me awake except when I occasionally doze off with the laptop keyboard still under my fingers.

In a few hours I will be undergoing my fourth Left-sided Heart Cath. You would think that this one would be "routine" by now but it isn't. I've been reminded more than once that I am in worse shape this time going in than the past three times. My kidneys are more fragile, I needed two units of blood at the last minute and frankly Dr. Thelman isn't even sure what he's going to run into once he gets in there.

Dr. Thelman is the wonder boy doctor who got seven stents in back in January. He's in his mid-thirties, definitely the most gorgeous doctor I've ever seen and is truly a genius and the most caring doctor I know in his generation. He's not the cocky young doctor who thinks he knows everything but he is more like the doctor who knows more than most doctors his age and those older but cares more for his patients than his own intelligence. I know I'm in good hands.

But still I'm nervous - and a little tearful. Somehow signing the consent form with all the risks (heart attack, kidney failure, bleeding, etc.) was much more daunting this time.

Maybe it's because this journey has just been much harder than even the doctors thought it would be. The disappointment on Dr. Feingold's face Tuesday when I said I just wasn't feeling as well then as a month ago was very apparent and he didn't hesitate to say it. I've been disappointed too.

Maybe the combination of all my "close calls" since last September have added up in my mind and I wonder if I've used up my "nine lives."

Maybe I'm just tired - and I think for good reason. This whole challenge has been one that I just haven't been able to hide, ignore, deny or plow through. Unlike my other illnesses in the past this one has kept me in bed more than out, in the hospital longer than not, feeling more fragile rather than strong. It's been much harder, if not impossible, to "put on my game face" and that's a huge frustration for someone who hates people know just how sick I really am.

But on the other hand this has been the most remarkable journey because I have survived things I never thought I would. I have more incredible people - friends with more depth, maturity and love than I could have imagined. And somehow I've grown.

Even in my admitted weakest times I have been stronger in these past months than ever in my life. And I truly have no regrets.

Are there things I would rather be doing right now - oh you better believe it. And are there things I hope I still get the chance to do in the months to come - oh yea, many.
But I can honestly say that right now, at this moment in my life there is this strange contentment that until today I really didn't believe I had.

I'm not even sure what has made the difference or how I came to this realization. It might have been the elderly lady in the doctor's waiting room who asked (after watching and hearing about my struggles that day) asked, "How do you stay so upbeat?" Her question so stunned me because I thought I sounded like a whining little girl and yet she saw something in me I hardly saw myself. and as I kept thinking about that and I have heard the nurses response to my struggles in these two days I realize that there really is something different in me. Even saying so makes me feel like I'm being arrogant but that's not what I'm trying to be. But somehow, in the midst of this I am still content and I can't take credit for it, stop it or deny it.

I've had several moments in the past years of nearly leaving this planet and realizing days later that I nearly died without saying good bye. I was looking at some pictures tonight and remembering that more than one were pictures taken just 48 hours before I came close to dying and those pictures were nearly my "last" pictures.

The truth is, I'm no different than anyone else. Every day some father leaves home for work and doesn't come home. Every day a child somewhere loses a mother, a mother loses a daughter, a friend loses a friend. And most have no warning at all. The only difference is that eventually this body of mine will eventually stop "coming back" from that place I've come close to going several times before and I probably know what I will die from.

But still I am content. It's not that I've done everything I thought I would do in this life or that I've finished every project I meant to finish but that I know this is only the beginning - and what a beginning it has been. Next week I will turn 55 and you know there's a lot of people through the years that never thought I'd survive to be 25. But I did and wonderful things have happened during these 55 years.

I know I've said this before but I believe it bears repeating - seize the day friends. Because you never know.

I have a world of the most wonderful, loving brothers, sister, son, daughter-in-love, friends and even people I've never met and just thinking about you all makes me smile, laugh and cry all at the same time.

I certainly hope this is not my final blog. But even if it is I hope these words live on forever. There is but one hope for all of us and that is the reality that there is a God Who is sovereign, loving, all-knowing and Who reigns over absolutely everything and everyone. Therein is my everlasting hope and foundation and the reason for my contentment. I love Him and trust Him completely no matter what happens.

And, I love you - yes, YOU! I really do. Thank you for being a part of my world.

from MY heart,
Kathleen