Saturday, August 15, 2009

MAKING TOUGH DECISIONS




Dear Friends:

What began as a few day hospital stay ended up lasting over two weeks and this time has revealed many things which I believe God has used to bring forth some some viable, livable solutions even though they may initially appear drastic. Let me tell you where I've been and where it appears we are headed.

My first return to the hospital occurred on the date of a scheduled doctor's appointment. Unfortunately extremely high blood pressures through the night despite the use of prescribed medicines and nitroglycerin sent me to the ER instead. I was admitted and stayed four days going through several of these unusually high blood pressure spikes with the doctor trying to find the right combination of meds to control the intense pain and quickly reduce the blood pressure.

I came home on Tuesday but on Thursday had an episode so severe that I stopped breathing briefly and lost consciousness. My roommate (a Cardiac RN) called 911 but I remember nothing after yelling for her help. A week later I was told I would be discharged but a sudden colon problem required some intervention.

Unfortunately a breakdown in communication between the cardiac and colon problems resulted in a more frequency of the blood pressure spikes without the proper intervention and I went into full pulmonary edema from which I am still suffering from.

I've said all of that to say that it had become very apparent to both Vonnie and I the "revolving hospital door" I seemed trapped in was NOT life and was adding to my stress and not adding to my days. We began serious discussion about ways to make my hospital visits less frequent yet still let me have all the medical treatment I need to have a comfortable, abundant life.

We looked at several solutions and have peacefully decided for me to go return home to hospice care. DON'T PANIC! HOSPICE DOESN'T MEAN I AM GOING HOME TO DIE!

Long term hospice care will give me everything I need for my own medical care including, medical equipment, medicines, nursing care, physicians, my own cardiologist and anything I receive in the hospital without having to be IN the hospital.

A more proper term is actually "Palliative Care" because I will continue to receive relief from the pain of the heart disease but I am choosing to not be subject to further open heart surgery or anything "experimental." The cardiologist DOES agree that this heart disease is advanced, aggressive and beyond anything they can come up with valid treatment. Spending the next months and years going back and forth to the hospital is actually more taxing on me physically than having all I need available to me at home.

Most of you know that my roommate is a cardiac RN and she will be able to give me anything I need if my personal nurse is not at the apartment. I will also have all the equipments including the necessary for me to be more comfortable and safe. All of my medicines regarding cardiac issues will be covered 100 percent with my insurance and hospice is also covered completely. Once my SSDI goes into affect we will find out about the transition from Blue Cross Blue Shield to Medicare will happen. Please pray that financially this all works out smoothly and without great cost.

I am home now and adjusting to the "strangeness" of a hospital bed in my room, oxygen noise in the room and new medicines. I may not write as often over the next few days but please keep in touch with me via Facebook and email. Your notes really do mean a lot to me even if I am not as quick to answer them as I used to be.

Most of all I cherish your prayers. And please, understand I am NOT GIVING UP or resigning to anything negative. I am choosing LIFE and I believe in the most abundant way possible. I just might start really feeling better if I can stay away from all the hospital chaos. May it be so.

Much love and thanks to you all.

From My Heart,
Kathleen

Monday, July 27, 2009

DEJA VU ALL OVER AGAIN

Last Friday I was supposed to have an 11a appointment with my cardiologist. I never made it. Instead I ended up in the hospital ER at 8 in the morning. My blood pressure had gone completely bonkers and eventually reached 240/149 -- at least that was the highest they admitted to me.

It is now Monday night and I am still here. Within the past 48 hours I have already 1) had six high blood pressure "attacks" where the BP numbers were over 200/100 in less than 60 seconds. It feels like a heart attack and so far they've tried four different ways to respond. I think we finally found a three-fold way to respond and so far it's working. 2) I completely blacked out while sitting on the "pot" (sorry if that's TMI). Fortunately there were two nurses standing nearby and I didn't end up on the floor but a few minutes later came to while laying in bed hearing "Ms. Gabrielle, are you okay?" and they had to tell me what had happened because I had no recollection of my latest adventure. 3) I now have a pain patch that delivers a measured amount of morphine over three days. It works so now all the doctor's have to do is figure out how to get me a prescription for me to have at home. Of course, the last thing I want to be is the next Michael Jackson so I'm approaching this one carefully. And 4) the idea of having oxygen available to me at home is finally being discussed openly and could make a big difference in the level of my comfort at home and ability to cope with the chest pains.

Once again I have doctor's scratching their heads and even brainstorming truly crazy ideas to help me more comfortable with a better prospect of a "life" at the same time. The goal this time is pretty basic: Lower my blood pressure and decrease the chest pain. I like that goal. Hopefully I get to go home tomorrow - not my shortest stay but definitely not my longest.

If anything good has come from this it has been a better understanding from my second cardiologist of who I am and what I believe in.

I know it must be hard for doctors when they really like certain patients and they run out of ideas to help that patient feel better let alone actually be cured. I am not one of those patients who quickly responds to meds and gets back on with life. Unfortunately I am a real challenge to the cardiologists. They really don't know why certain things are happening like blood pressure spikes and unusual chest pains on top of the constant angina so they end up brainstorming ideas that are more science fiction than possibility.

But once again I am being forced to consider my life and what is truly important to me. I'm having to make crucial decisions I never thought I would be faced with at my age. I spend some time researching my various physical challenges on the Internet and a majority of the time talking with my roommate who, because of her 25+ years of nursing experience knows what is "comfortable" and what is extreme when it comes to medicine. With her help I'm able to vocalize my concerns about CPR, ventilators, dialysis, etc.

But these things are not simply discussed on a medical level but truly a Hebraic world viewpoint of both life and death. I no longer look at death as a finality but as a simple "crossing over" to the next part of life. I think medical technology has robbed us of the real truth about death and taught us (especially in the US) that death is something to be avoided at all costs.

I wish I had my old copies of CS Lewis' Space Trilogy. I can't recall the characters nor which of the three books (although my guess would be Perelandra) where the happy go lucky characters which I personally pictured as large seals would come to the time of their "death" (a word Lewis did not use) they happily dove into their next life. To me this was the most biblical definition I had read.

I want my "crossing over" to be as picturesque as my life. I want it to be everything GOD has planned for me and not a time of man trying to dictate an event that is as much a part of life as birth itself.

Are these hard words for me to say? Yes and no. Because it is truly my heart that GOD be the one making all the decisions for me - not me, not my family and definitely not my doctors. It is my heart to give God total control not only of my earthly life but also when I enter the next life.

Once again I come away with more peace rather than less, more joy rather than depression and more confidence and less fear. I believe that is how HE wants me to live - now and later.

From the Heart,

Kathleen

Wednesday, July 15, 2009

WHEN THE MARATHON BECOMES A SPRINT

AN OPEN HEART JOURNAL
July 12, 2009
WHEN THE MARATHON BECOMES A SPRINT

This week I’ve actually loved watching TV. That’s because I’ve been able to watch Le Tour de France focusing on the incredible comeback of Lance Armstrong - cancer survivor, seven time “Tour” winner and presently in third place by 8 seconds. He’s become the ruler of the Tour - regardless of how people feel about him or how he lives his life outside of the race.

I was a cyclist once: at a time when girls were not known for owning or even riding ten speed bikes, the only backpacks available were olive green and said “Boy Scouts of America” on them and “bike” helmets were actually stripped hockey helmets.

But I’ve never stopped following cycling and Le Tour de France has been one of my favorite events for years. Today I was impressed by two wonderful aspects of this race - the fantastic crowds and the finish of each of the 21 stages. Because of the way the Tour is set up a cyclist could win the entire race even though they’ve never won a single stage. Riders ride over 2100 in three weeks and in 21 stages. that means a lot of 100-mile days. But some of these stages end in a sprint - AFTER riding close to or more than 100 miles in the mountains.

To me this athletic event comes the closest to emulating a well lived life. It is the perfect combination of ups and downs, has marathon miles but with occasional sprints in the middle and end, a crowd of supporters cheering you on and a great finish. In fact, to me it almost sounds like:

Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight, and the sin which doth so easily beset us, and let us run with patience the race that is set before us... Hebrews 12:1

When I watched the Tour yesterday I was amazed at the lines of fans standing on the road waving flags at all the riders as they went by and my first thought was - how good that must feel to have that kind of support. Then I realized that I, too, have those “standing along the road” as I go by and I have those already in Heaven who are cheering me on, so to speak.

But for me the hard part is when the last two miles suddenly becomes a sprint after I’ve been riding for nearly 100 miles. I am amazed as those riders stand up in their pedals and ride as if they haven’t been riding at all. But in a way that is where I feel I am in my own life. It feels as though I have been riding along, going up and down the mountains, enjoying the scenery, staying ahead of the crowd and cherishing the coasting down hill and suddenly I’m being asked to sprint to the finish.

How this translates into my “real” life is because it seems like the days that seem shorter and shorter, that months fly by much quicker and the finish line is coming more into view. And so I feel as though I am being faced with the decision of how to respond to the call to “breakaway - now!” that I hear so clearly in my ear. It’s like my life is no longer measured in years but months and my daily activities are measured by the number of steps I can take.

This is not the first time I have been in “this” place. I was extremely sick while in college but for reasons that really weren’t well thought out or even reasonable my husband at the time and I decided to hide my illness from everyone on campus. They had no idea of the pain I was in, all the meds I was depending on or that the doctor’s weren’t sure I would survive. But because my life was clearly on a different course than those around me I found myself irritated at the trivial complaints and immature priorities of my friends. I no longer wanted to spend time talking about things I thought were insignificant compared to eternal values.

Needless to say I survived that year and the next 35 years but it certainly has been full of mountain climbs and downhill coasts with a few rest days in between. And now, unless God miraculously intervenes (which I DO believe He is capable of doing) I am looking at the finish line. I just don’t know exactly how close it may be. But no matter how far or close I am very aware of it’s existence.

But what I am also very aware of is that going through the “Finish Line” is just that - going through. And I have been forced to acknowledge that I’m at a new stage in this race called life and I can hardly stand the thought of wasting a single moment of this sprint towards its end. No matter how close or distant that finish line is I want to make every single day significant and purposeful.

But it shouldn’t take a close encounter with death to motivate anyone to change their priorities and decide to make every day of this life matter. I came across the following quote this last week:

You can't do anything about the length of your life, but you can do something about its width and depth. Shira Tehrani

It doesn’t take much to realize that events we have been taught would begin happening in the “end days” are quickly taking place all around us. Here in Texas there have been seven earthquakes in the last two months and to me that is fairly surprising to me. A look at other countries, our own government and the growing depravity of men’s hearts should be a huge indicator as to the times in which we are living.

The bottom line is that there is a “finish line” for every one of us because life as we know it on this earth will one day come to an end whether or not we have “crossed over” into eternity before that end takes place. CAn I challenge you now to take inventory of your life and its priorities? Do your passions have eternal value? Does what you find your mind bring strength to your life’s purposes? Is what you are doing today what you will be glad you’ve done if you lose the ability to do anything tomorrow?

I’ve done my share of marathons in this life and now it’s time to switch gears into the final sprint. Even though it has come years earlier than I ever expected I don’t want to miss out and be overtaken by the “pack” that is closing in behind me. And even if I don’t win the stage I want to finish doing my best - not for myself but for the One who has given me life in the first place. A cyclist rides for himself but with loyalty to his team and their owner. I want my race to honor the team who has committed to ride with me and my “Owner.”

The sentence in Hebrews 12 finishes with this...

Looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross, despising the shame, and is set down at the right hand of the throne of God. For consider him that endured such contradiction of sinners against himself, lest you be wearied and faint in your minds. Hebrews 12: 2,3

There is One who has crossed the “finish line” before me and has tasted death on my behalf. And then He became the “resurrection from the dead” also on my behalf. If I keep my eyes on Him as I finish this race I will finish the race with honor and humility. And I will be able to say along with the Apostle Paul...

I have fought a good fight, I have finished my course, I have kept the faith: II Timothy 4:7

It is my hope to not only finish my course well but to challenge everyone around me to finish well as well - whenever that “finish line” might be. I’ve just been blessed with a hint of that “finish line” and the motivation to sprint towards it honorably.

From the heart,
Kathleen

Monday, July 6, 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.

Sunday, June 28, 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 5, 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

Tuesday, May 26, 2009

A TERRIBLE, HORRIBLE, NO-GOOD DAY


An Open Heart Journal
May 26, 2009
Back in the "Saddle" Again...

It started out as a regular visit to the cardiologist and ended up in Baylor Grapevine Hospital. But what took place in between has left me exhausted, frustrated and frankly, a little ticked.

Dr. Feingold was initially concerned when I described the amount of daily chest pain I have been experiencing and that a kidney specialist had put me on a medicine that had increased my edema and put me at risk for congestive heart failure.

When he said they needed to do a heart scan and a nuclear stress test I had no idea it would turn out being more painful than my heart attack in January. The tech said I would experience a feeling of my breath being taken away but it was worse than that - MUCH worse. It was so bad the tech ran for the doctor and when his assistant came in she immediately recognized me and wasn't surprised I was in such pain because in her words, "Oh, I know this case - her heart is a complete mess." Then I find out they have nothing to give me for the pain there in the office.

So they actually continued the test fo 12 more minutes. It took me a couple hours to recoup.

the doctor told me that there was "non-profusion" where my seven stents are (which means no blood flow) and that was causing the pain so he contacted the doctor who put in the stents. The agreed he would need to go back into the heart via a heart cath to see where the problem lies and try to fix it.

They were going to do the heart cath tomorrow but my kidneys are too close to being in kidney failure so they will have to give me certain IV meds tonight and tomorrow to buffer the kidneys so the dye doesn't due any more damage. My creatine levels (which show what level of kidney failure on a scale from 1 to 5) show I am at 2.8 which is Level 3. They have talked about starting dialysis if they get to 3.0.

I am not handling this return to the hospital with much grace right now. I'm frustrated, tired of being so fragile physically, and adamant that I am NOT here on my birthday next Thursday or miss my birthday celebration on Saturday.

I'm not really afraid of the Heart Cath as this doctor does an excellent job at them but I do understand since this is my fourth one it is getting more and more risky and this time my kidneys are in their worst shape thus far. AND I am already into congestive heart failure which the heart caths usually put me into afterwards.

Please pray - for NO complications, for an "easy fix" and I quick discharge.

From the heart - Shalom,
Kathleen

Friday, May 15, 2009

Making a Silent Difference


An Open Heart Journal
May 15, 2009
Someone is Watching - and Listening

This week I received an email from a stranger. And suddenly that stranger became a friend. It seems that a few years ago someone gave this stranger a box of CDs and tapes to use to distribute to people hurting, needing encouragement and needing to know the love of the Father. Hiding in the box were three tapes of Scriptures songs which I recorded in 1994-95. The tapes were given away at my church, at Women's Aglow meetings, churches and even hospitals. I never sold them and any contributions went right back into purchasing more tapes, cases, and the printing of the labels and lyric sheets. There were many nights my son and I sat in the front room cutting, folding, labeling and duplicating the four different tapes so I would always have plenty to give away. I estimate, from the number of blank tapes I went through, that between 1994 and 2003 over 1000 of each tape was given away. Frankly, I had no idea if even one was still being listened to - until Sunday.

I emailed my "stranger" back and explained that I hadn't recorded any more music since 1995 even though there was one more tape I have wanted to record but never had the opportunity. I then explained "where I've been" since September 2008 and the physical challenges I have been facing.

She emailed me back immediately overjoyed to have "found" me and asked me to call. That evening I called and listened to this dear lady, who I'd never met, tell how she received my tapes and that she had been listening to them nearly every night for over two years. She then told how she'd spent months trying to find me through my old church, through people listed in the acknowledgements of my lyric sheets and the Internet. She finally found my former husband who passed away in December and through a memorial page on the Internet found my son.

Frankly, I don't think I've ever had anyone actually LOOK for me. But not only had she been looking for me, she had been praying for me - and the most fervently since 2008 and in 2009. I was glad to know she was blessed by my music (not REALLY mine - it was all written by the Spirit) but I was even MORE blessed to know she had been praying for me.

I haven't though much about those tapes this year. My beautiful white guitar still sits in the corner of my bedroom but no longer does it get played for hours a day and the last time I "heard" a new song was over a year ago and it never really came to be sung, played or even finished. Unfortunately my lungs are weak, my fingers sore and stiff and sometimes I barely remember songs I sang hundreds of times during those years.

One night while laying in the hospital listening to my iPod I was surprised to suddenly hear my own voice in my ear and realized that somehow the sequence of music had shifted from the classical playlist to the downloads of my own tapes. I found myself hearing "Fear not, I am with you. Fear not, I am here. Fear not, I am with you and I will always be so be not afraid." I began to weep as the song continued telling me the very thing I needed to hear.

One of my favorite places to sing had always been in hospitals and I spent many days going from room to room singing Words of the Father over people who were sick, frightened and alone. Suddenly I was that person and the Lord secretly changed my iPod to remind me that I wasn't anymore alone than the people I had sung over a decade before.

So here I am, wishing I could do this, go there, see that and music I recorded in 1995 was ministering to someone who I'd never met. I really wasn't even sure how to respond. I am convinced, however, that it isn't so much that my voice (back then) was so beautiful or the melodies so grand but because the lyrics were right out of the Scriptures - the Living Word of God that penetrates our souls and reaches our spirits. All I ever wanted to do was to "psalm" over people - and put them at rest (and usually putting them to sleep as well.) I never wanted to make any money and even though I was often chided for giving the tapes away instead of selling them. I just never felt right about making a profit from something that had been freely given to me.

I do miss being able to play the guitar for hours like I once did and I do miss visiting the sick and hurting and watching a true shalom settle over them as the Word ministers to them. But for now I will try to accept this extended "Sabbatical" I seem to be on. Yes, I do sing, but only here in the privacy of my room - and only after the apartment is empty. But maybe one day I will be able to return to my "psalming" and even sing over the one place I've longed to sing over since recording my first song in 1994 - My Beloved Israel.

But today I know that I secretly made a difference - with a tape given away freely which made its way into a stranger's hands. And that stranger prayed for me - I think that is a GREAT return on my free tape!

I wonder what your "silent" difference will be in someone's life? No doubt you will make one whether positive or negative. And it's never too late to make it positive.

From the Heart,
Kathleen

p.s. I don't have the means to duplicate the tapes but I have transferred the tapes into my computer and can make a CD of each tape if anyone is interested. The only technical error is that it recorded each side of the tape as one long song so there are no breaks between the songs. On the other hand that is exactly how they were recorded so there would be 30 minutes of continued music and me reading Scriptures for each song. Feel free to email me if you would like a copy of: "Everlasting Love," "There is a Sanctuary," "Consider Jesus." or "Father's Heart."
Kathleen Gabrielle: lyghtekeeper@gmail.com

Saturday, May 9, 2009

Re-Learning How to Live


May 9, 2009

We're always getting ready to live, but never living.
- Ralph Waldo Emerson

Last night the simple task of putting sheets on my bed jolted me back to the reality that t I am living a very fragile life these days. One minute I was pulling on that fourth and final corner of the sheet and the next moment I'm sitting on the floor yelling for my roommate to get my Nitroglycerin spray.

Several sprays and slow deep breaths later the pounding in my chest slowed back down and I was ready to settle into the bed that my roommate finished making. She had been unaware that I was having to undo and remake the bed after the cleaning lady put my electric blanket underneath my sheets rather than on the top. And I only thought removing and remaking the bed would be tiring - not joltingly painful. Putting sheets on the bed has now been added to my ever growing list of "Don't ever do that again" activities.

Every day I am reminded of things I can no longer do. Commercials on TV for Six Flags sadly remind me I will never again ride a roller coaster. Seeing Lance Armstrong make another amazing comeback reminds me that i will never again feel the thrill of coasting down a mountain road on a racing bike. Watching someone else clean the apartment reminds me that I can't vacuum (which I actually love to do) or clean like I feel I should since I am just "sitting home doing nothing" while my roommate works 60+ hour weeks as a nurse. Last week a scary drive home in the dark showed me that my long distant (or even short distant) night drives that I once loved are now unnerving, blood pressure raising dangerous journeys.

I'm not writing all this to feel sorry for myself but to remind myself and anyone reading this that we all need to remember to "seize the day" that we have each and every day. Had I know three years ago that I was riding my last roller coaster I think I would have gone "just one more time" before leaving the park that day.

I've now been back home for a full month and I'm finding my energy is waning a little each day rather than increasing. Last week it took me three days to get out to the store when the week before I was able to get out to the store three times in one week. All the pep talks and telling myself to "Never, never, never give up!" can't make this tired body do something it simply cannot do.

There is so much I would love to do in the months to come. I long to visit friends - in south Texas, Tennessee, Indiana, Missouri and my siblings in Michigan and Arkansas. A few years ago I would have just driven there but my days of 6-12 hours of driving have ended. I want to go to the zoo, see the World Aquarium in Dallas, visit Shamu once more and learn to play golf.

I want to ride a horse, ride in a convertible with the top down, swim in the ocean, play in the snow, swing on a swing set and go down a slide. I would love to romp with a dozen beagle puppies, fish on a lake, ride, hike in the woods, take a spontaneous road trip, sail on a catamaran and walk on a mountainside. I would love to see the Grand Canyon, the trees of Washington State and the rock formations of Arizona.

But today I would just love to go someplace - any place that isn't Walmart or a doctor's office. I just want my world to get a little larger than this room I call home.

None of us really know what wonderful lives we have until suddenly a portion of that life is taken from us. If you can do something today that you would miss if you could never do it again then I challenge you to do it - do it today if you can. When I went to work on September 4th I had no idea I would be in the ER five hours later fighting for my life and entering the world of open heart surgery, heart caths, heart attacks and stents and months in the hospital.

So that one thing you've been putting off - stop putting it off. And even that one chore you really don't like doing but would miss the ability to do - do it like it might be your last time to do it.

Today I'm going to try to find just one thing to do that I haven't done in a long time but won't make my heart scream at me. Anyone up for a game of Scrabble?

From the Heart,
Kathleen

Monday, April 20, 2009

NOT AFRAID TO DIE BUT AFRAID TO LIVE

An Open Heart Journal
Living in the Valley of the Shadow of Death
April 20, 2009


TRAGEDY FUELS GOLFERS RECORD BIRDIE BLITZ
“Anthony Kim made Masters history on Friday with a record 11 birdies in his second round and said that reading about the death of baseball player Nick Adenhart had changed his mindset.

The Los Angeles Angels rookie pitcher was killed in a road accident in California on Thursday just hours after making his Major League Baseball season debut.

Kim, one year older at 23, said he had been upset after a disappointing opening 75 on Thursday but had put things into context after reading a newspaper report of Adenhart's death on Friday morning.

"The last line in the story was: 'You never know what can happen, even at 22. You have to live every moment of every day like it's your last.' “


In 2005, while living in a small town where television stations were as rare as snow shovels in Miami, I was “forced” to spend my weekends watching PGA golf while receiving my IV rounds of Amphotericin B or just resting from the affects of Histoplasmosis. Of course, my roommate called it “watching fresh paint dry” but I was finally beginning to understand the incredible science behind hitting a ball in such a way the golfer actually knew where it would land and where it would magically stop rolling. I found this ability very intriguing and my Saturdays that were once filled with walks, and enjoying gardening or yard work were taken by my sitting in the recliner watching men and women become my heroes of golfing prowess.

The morning I saw this opening headline I was immediately drawn to read about this record-breaking feat at the Masters which didn’t feature Tiger Woods, Phil Mickelson, or Vijay Singh. In fact, none of my favorites were even in the top ten right at this point. Instead this story was about a mostly unknown 23 year old golfer who “put things into perspective” after hearing about the death of a 22 year old baseball rookie.

Why was this article so important to me? Because it said what I’ve had to learn to do this week - to live each day to the best of my ability - like it’s my last - but to not be driven. There is delicate balance here and frankly I’m lousy at it.

When I first found out I had heart disease I thought I would make a comeback to rival all the other times in my life when I was told I would not survive. I went back to work just three weeks after my first bout with congestive heart failure and ended up back in the hospital and having open heart surgery. Then I returned home after the surgery only to discover I couldn’t make it across the room to the bathroom, couldn’t open the refrigerator by myself and couldn’t even make a peanut butter sandwich for myself. I was devastated and wondered if recovery really was even in my future. I know now I should have listened more to my roommate (a Cardiac RN) instead of my doctor when I made the decision to come home rather than go into a rehab facility.

Nearly two months later I was finally able to begin cardiac rehab and found myself back on the treadmill and exercise bike like “old times” but this time 5 minutes was a monumental goal. Then just one day after being released to drive again and return to work I was falling off the exercise bike after only three minutes and hearing nurses and EMTs shouting my name, shoving aspirin and nitroglycerin tablets into my mouth and being rushed to the ER with all the signs of a serious heart attack.

It has now been 31 days since I left the hospital after being in three different facilities over a three and half month period. I have one goal these days - have a “good” day. For me a “good” day is one where I’m not in the hospital and I’m alive. No more dreams of returning to 40 hour work weeks or 10 hour days. I’m not entering the Senior Olympics when I turn 55 in June and I’m not even thinking about returning to Cardiac Rehab. I have to focus on one thing right now - or I might not survive my next big “drive” to do more that I should.

The problem is that my mind hasn’t changed with my heart. And I have found myself trying to do more than my heart wants to do because my head says I’m not doing enough. I’m having to come to the painful truth that my head is a liar and is out to kill me. In fact the harsh reality is that my head would cause me to self-destruct if I let it. And I’ve not yet figured out how to make it shut up.

Example: This week I vacuumed my bedroom and that was okay. No furniture to move - just a basic square room. Then I cleaned the kitchen floor - again, very small area, not bad. But then I went to start the living room. This is a room where plants have been turned over, grandsons have eaten, the cat has - well, what older cats do - and it required the moving of a chair here, picking up a table here, etc. Within 30 seconds of moving the vacuum cleaner I was grabbing my chest and looking for a seat that wasn’t buried. I kept my cool, started breathing deep diaphramic breaths but the pain was a huge reminder that I wasn’t the same person who used to vacuum the entire apartment with ease. Fortunately I’ve come to understand the difference between my spasmodic heart pain and an actual heart attack but pain is pain and I didn’t like this at all.

It took nearly two hours before I was able to skim through vacuuming the room and put things back in order because I had to rest every two minutes of exertion. The last thing I wanted to do was tell my roommate what happened but when she asked how my day went that night my “Fine” wasn’t very convincing and she eventually heard the truth.

Three days later she finally scolded me for doing more than I am supposed to. And then she asked me two questions, “Are you afraid to die?” and “Are you afraid to live?”

the first question was an easy “no.” I’ve come close too many times just this year that it really didn’t scare me. But living - that’s a different story. All the tears I had been holding in all week came flooding and I began confessing that I had found myself afraid to make plans even for the present day let alone for a month from now. And that the joy of dreaming of a future had become a painful nightmare. I was torn between wanting to plan my 55 birthday party in June and afraid to make plans because I “might” end up in the hospital two days before the celebration and everything would go to waste.

You see, my closet is presently filled with all the makings for dozens of Christmas cookies that I never got to make. My “Birthday Book” has birthday cards for friends and family for January through April that I never got to send. I didn’t even get to vote in thee Presidential Election because while on the way to the Early Voting Poll I ended up in the hospital! My mental “Day Runner” is filled with things I never got to do because a trip to the hospital got in the way.

I’ve come to a place that most heart patients come to - afraid to live. Unfortunately my response to this fear is to do the very opposite of what I should. I returned to my “driven” ways in order to make myself feel productive and useful. I cannot seem to grasp the concept of “rest” and in not doing so I could easily end up in the very place I’m trying to avoid.

For me, learning to rest, comes from realizing one thing - I am not my own and my life is not my own. When I have spoken about my close encounters with death (to the point of finding myself standing next to myself watching nurses trying to “bring me back.”) I have been asked “were you tempted to not come back?” My answer has been, “I didn’t have a choice. It wasn’t my decision to make.”

I am here because God has kept me here - not because I willed myself to be here. And I need to keep THAT in mind when it comes to how I treat this life I’ve been given.
My roommate told me that the doctor who put in my seven stents said he only had one hope for me after my heart attack in January - that he could somehow give me “good” days. And that is what I need to aim for each morning. “Good” days are when I can take care of my personal needs, maybe drive myself to the store, tend to the cat, and write a few more paragraphs. This doesn’t sound like much but it’s a lot more than those in the medical profession who have seen my heart thought I would be doing.

Living this way is the opposite of what the world says is success and even some of my friends would rather see the overly optimistic overcoming attitude they’ve seen in me in the past. But I have to deny myself that way of life. Why? Because I need to be content with one thing right now - having “good” days. Days where the pain in my chest is somewhat tolerable, days when I am home and not in the hospital, days when I accomplish just one thing above and beyond the five “must do to live” things required every day.

This might not sound all that encouraging to you and might not seem like I have that same overcoming spirit I’ve displayed in the past. You might even be thinking I need a little more “conquering” spirit. But I now know there is one thing that I need more than a conquering spirit and that is contentment. It is contentment and rest where my life needs to be. And as long as I can be content with “good” days I won’t find myself doing things that will put me back in bed or into the hospital.

I wonder if this is where Paul had found himself when he said “I’ve learned that no matter what state I am in to be content.” So today on my “To Do” list is one more important item: “Be content.” Maybe if I put it on my list I will remember to do it. And if I put it on the list everyday I might just reach a place where I do it without being reminded. I could be content with that.

From the heart,
Kathleen

Monday, April 13, 2009

Dayenu - A Passover Lesson in "It is Enough!"

An Open Heart Journal
Living /Each Day Better Than the One Before
April 13, 2009

I had an appointment with my cardiologist today which was very good. It was the first time for him to see me since February and he was quite amazed at how well I looked and am feeling. It felt great to go and also return home on the same day without stopping at the hospital. It is now Day 24 of being out of the hospital and today's appointment seemed to confirm that "so far, so good." There is one word to describe how I really feel - content. Is my blood pressure still high - yes, and often on a daily basis - but the amount of medication need to bring it down will certainly make me a zombie which is NOT an option for me. Do I still have chest pains? - yes, but now I've learned to handle them without panicking. Am I seriously limited in my daily activities - oh, you bet, but I don't stress over 20 item "to do" lists anymore and stay content with just my "Big Five" and rejoice when something can be added. The following is one example of how I am learning to live one day at a time and one moment at a time in this hectic, driven world.
Kathleen

====================================================

DAYENU!

This year my favorite part of the Passover Seder came during what used to seem the most tedious and boring - the recitation of the "Dayenu." In Hebrew "Dayenu" means "It is enough." Now, this is NOT the "I've had enough, and I'm not going to take it anymore" thinking. It literally means, if nothing else happens, what just took place is enough.

In the Passover this phrase is said after each of 15 steps it took to remove the Children of Israel from Egypt. It literally goes like this..."If You (God) had only brought us to the Red Sea but not parted it - DAYENU!" and everyone in the room shouts"Dayenu" and slapping their hand on the table for emphasis. This happens 15 times (or more if the Seder is a "Messianic" Seder where Yeshua is recognized as the Passover Lamb and Messiah) and is usually followed by singing the song also called, "Dayenu."

But the reality is that for most of us the idea of "Dayenua" almost absurd. Who, in their right mind is going to say, "If You had only parted the Red Sea but not let us go through it, it would have been enough" ?

Think about one thing thing that God has done for you this year. And then go back just one step away from that one thing's completion. Could you honestly say something like, "If You (God) had only brought me to the hospital in time but not let the doctor's save my life, it would have been enough." Now I do realized that had He NOT saved your life you wouldn't be saying anything at all - but I'm just trying to make Hebrew point in the midst of our insanely Greek thinking.

In what areas can you right now tell God, "It is (or would have been) enough?" This is truly the Hebrew version of, "It is well with my soul."

I have figured out my Dayenu and I was so reminded of it during this Passover I found myself shouting "Dayenu" louder and with more meaning than in the past 12 Seders I have attended.

My "Dayenu" is this..."If You (God) brought me through the surgeries and never heal my heart, it is enough." Now I know that won't sit well with many of you but Ihear me out. I'm not saying God can't or won't heal my heart nor am I saying to stop praying for the healing of my heart. But right now I am doing this one thing - living with whatever heart I have and right now that's proving to be successful. If I have just one thing to focus on it is to have more "good" days than bad ones. Whatever God wants to do and whenever He wants to do it is up to Him and not me and I have chosen to be content right where I am.

The truth is that everyone in the medical profession who has either seen my heart up close and personal or simply read my medical records is totally amazed I'm doing anything at all let alone, walking, driving, shopping and living! On paper I look dead! But here I am. I'm not running a marathon, in fact I'm not even walking on a treadmill, but I AM walking and I am alive and I am having GOOD days. And you know what? - that is DAYENU!

My daily goals are very simple - to do the five things I have to do everyday which are essential to my physical well being and maybe add just one or two more activities. I'm not driving myself to clean the whole apartment - I'm content to be able to clean one shelf or one drawer or simply iron one shirt. Why? Because I am simply content to have a "good" day. Some days I end up doing even more than the doctors think I can do and there is really no natural explanation - but God. He can and does strengthen me to do more even though my heart is just as sick today as it was yesterday. To me THAT is a miracle and it truly is "Dayenu."

Yes, I DO believe God heals - I experienced it first hand having been the first Baptist girl I knew healed from a wheelchair during a 15 minute nap. And please, do not tell me that my "dayenu" attitude is going to keep me from being healed this time. The truth is, I've had this same attitude for the majority of my life and never knew there was a word for it. I even had it the very day I laid down to take a nap with my entire body wracked with the pain of Lupus and I woke up completely whole.

It is 'Dayenu" that brings me to tell God, "I still trust You...no matter how far You bring me or even where You leave me."

Friends, we are living in a day when not everything we have been taught about God is playing out for us and His absolute Sovereignty in everything is being presented to us in what may appear to be painful and frightening ways. But it does not have to be painful OR frightening. We need to cling to one thing - that not only IS God Sovereign, but He is forever loving - even in the midst of His Sovereignty. Somehow the Children of Israel already knew this and they were instructed to pass this understanding down from one generation to another.

It might not "feel" good but I believe we all need a little, "Dayenu" in our lives today. And for those who know the melody, try singing the song, Dayenu, as a song of true worship to the One Who is truly in control, loves you and will bring you into His Kingdom when it is truly "all said and done,"

DAYENU!!

Kathleen

Friday, April 3, 2009

Three Heart Cries - Three Musical Answers

An Open Heart Journal
Living Each Day Better than the One Before
April 3, 2009

Three Heart Cries - Three Musical Answers

Music has been a major part of my life since I was a little girl. My Father collected records - mostly classical music with a little Herb Albert thrown in and he would quiz me to identify songs by their title, composer and dates while at the dinner table or while watching a television program that used classical music in the background. I didn’t get it right the first time but I worked hard to get it right the second. Music has made me smile, cry, and even choose life over death on more than one occasion. When I’m in pain or going through a long medical test that requires me to lie still for long periods I play the Alphabet Game which I learned from comedian Chonda Pierce. You start with the letter “A” and sing at least one hymn for each letter of the alphabet. I rarely finish but just the attempt always calms this little Baptist heart and mind that memorized much of the Baptist Hymnal during the 69’s and 70’s. Twice in the past the Lord has used a wonderfully talented songwriter/singer to touch my heart and yesterday He did it a third time.

In 1984 when I thought I might never live to see my only son grow up a song called “The Warrior is a Child” played on the radio while I was carefully driving myself home after a long day and discouraging day with the doctor. I turned on the radio just in time to hear these words...

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child

©Twila Paris “The Warrior is a Child” 1984

I was so touched by the song I had to pull over just to cry. I remember going to the Christian bookstore instead of home just to find this album which was brand new at the time. I even wrote Twila and met her both at a concert in Dallas and once again at the same Christian bookstore so I could tell her thank you. More than one of her songs reached my heart and I was very grateful. I used several of her songs when I visited patients at a local Cancer treatment hospital to sing to them in their rooms.

A few years later I found myself a single mom fighting for custody of my son and feeling like I was losing in every area of my life. I was so suicidal that I knew I shouldn’t be alone so I drove to a friend’s house. While on my way there I turned on the radio just in time to hear Twila’s familiar voice singing these words...
For the young abandoned husband
Left alone without a reason
For the pilgrim in the city where there is no home
For the son without a father
For his solitary mother
I have a message
He sees you. He knows you
He loves you. He loves you
Chorus
Every heart that is breaking tonight
Is the heart of a child that He holds in His sight
And Oh how He longs to hold in His arms
Every heart that is breaking tonight

©Twila Paris “Every Heart that is Breaking Tonight” 1989

Once again, I pulled the car over and wept. I swore I heard Twila say my name as she sang “He sees you, He knows you...” and I knew that taking my life was not what He wanted for me or my son. Just a few weeks later I sang that song in church and only one other person understood the real impact of those words on my heart and life.

Yesterday, the Lord used the same artist while I was driving on the same road and spoke to me so clearly with the promise that He has not forgotten me. This was the first “long” drive I had made in many, many months and I was headed back to my son’s house after running several errands in my own home area. I was happily listening to my iPod through my radio when interference made hearing the music impossible. I switched stations and in just a matter of seconds heard Twila singing...”When you think your dream has died - He has not forgotten you. When your body aches from trying - He has not forgotten you.” This time I wasn’t able to pull the car over but I wept because it was as if she was singing words right from my deepest heart cries that very morning.

Here is what the first half of the song says:


When you think your dream has died
He has not forgotten you
When your body aches from trying
He has not forgotten you
When you worry for tomorrow
even though the sky is blue
See the sun is shining
And He has not forgotten you

When your life feels like December
He has not forgotten you
When it's painful to remember
He has not forgotten you
When it seems you cannot live
And there is not much let to lose
He has got a plan
He has not forgotten you

And hope will spring eternal
in the home of those who know
That loving eyes will follow
everywhere we go
Even in the darkness
His promises are true
Keep this in your heart
He has not forgotten you

He is faithful
He is present
He is listening
He is love

©Twila Paris “Not Forgotten” 2009

This album was just released in February and is titled “Small Sacrifice” and I encourage you to find it and listen. These are songs with a message for most of us today that find ourselves facing things we never thought we would be facing. Twila has spoken to the Body once again with purpose and encouragement in a way no one else can.

And so my heart, though tired and in pain, physically and emotionally, is clinging to the promise that He has NOT forgotten me. Yes, my life feels like December and many times in the past weeks I wondered if there was anything else I could lose. But there is still this underlying hope that HE has not forgotten me.

My hope for you is that you will know that He has not forgotten you. It’s not just lyrics from a song. It’s promise in His Word and sealed even with the blood of His own Son. As we enter the season of Passover and First Fruits (Resurrection of our Savior) let us remember that not only our salvation but our life here and in eternity has been bought, paid for and sealed by the promised Messiah and His death and resurrection. This is no trite promise - it is a guarantee that “He has NOT forgotten you.”

From the Heart,
Kathleen