Patient Diary: Amy Jo Chambers

I can think of nothing that we take more for granted than our next breath, we take it for granted until it's gone. There is nothing more desperately important to us than oxygen! Every other concern of the day is forgotten until we can breath again.

Saturday, April 1 2000

When I decided to write,I realized it would be read by strangers.When sorrow visits our home it makes us feel uncertain about our views of life. And yet I want to be honest with myself and use this Diary for the purpose of finding some comfort for all of us. I want to welcome you in my home and share with you what we already have in common, an unwelcome guest that will not go away.

I'm 54 years old. A wife and mother of 3 living children. I lost a 19 year old daughter in a automobile accident 10 years ago. Could that have played some part in all of this? (I wonder) Before Christmas of 1994, I was feeling horrible. Fever, chills and burning while urinating. Went to my GYN and lab showed bladder infection. I was prescribed Macrobid for 14 days. I don't recall any side effects while taken this, but at the end of my 2 weeks all hell broke lose. Never really had much of a health problem so I didn't know the life threatening situation I was facing. Have to leave for now. I will pick up tomorrow.

Hope I remember to set my clock ahead one hour before I go to bed tonight. Sure do hate to lose that hour...

Saturday, April 1 2000

Last April (1999) we were told I was considered a candidate for a lung transplant at University of Alabama in Birmingham. The evaluation took place over several days. These tests are head to toe and nothing is left untouched. I felt confident and when asked by the social worker what did I want to do after the surgery I looked at her puzzled 'cause that was easy to answer: "I want to breathe again."

I went home and was instructed to come back the following week for a film on transplantation and then the grand tour of the OR and a visit on the floor of the transplant patients, ending with a interview by the transplant team in the afternoon. On that day I would be told if I would be accepted as a lung tansplant recipient. What could go wrong? I was healthy except for my nasty lungs. I was confident...

Sunday, April 2 2000

What is happening to me? I can't breathe and I'm so scared. I must be dying... I've never been what one would call 'really' ill, just the everyday boring germs everyone gets and 'gets over.' My husband Teddie was at the accounting desk, verifying we had insurance... Someone was reassuring me and showing me how to breathe correctly.

In the ER everything went so fast as I was being connected to all the equipment along with oxygen. I was really feeling better and I was ready to go home. No such luck. After some pleading on the 'Teams' part, I signed papers to have all tests that invade the lungs. Could be blood clots...could be a number of things...we need to go in and see.

I was told I would have something by IV to relax me but not put me to sleep.(Darn) They needed me to cough for them on command. I was relaxed enough that I was no longer anxious of what was going on around me. And believe me there was plenty of action and these technicians knew their stuff. In what seemed like no time at all, they were through and with the good news of 'no blood clots'. There was too much high pressure so they stopped.

I was then introduced to my pulmonary specialist. And I'm proud to say we remain in partnership today. I was asked if I ever smoked and how many packs. Since I quit back in 1989, telling the truth seemed proper. Allergies and what medicines do I take. That one was easy. One daily vitamin and yes bronchitis many times.

I was admitted and I remember hearing words of 20 years of tobacco abuse with findings of pulmonary hypertension. Just about forgot one of the very important questions for my chart. Are you allergic to any medicines? No, not that I know of. I was given something that was placed over my mouth in a mist. It sure did help me. A nebulizer they called it. I still had my hives around my waist and boy did they itch.

The next morning my doctor came in and we went over so much, my head was swimming...I was told we were going to work as a team and that sounded great. I was very comfortable with my new found saviour so I began to tell him my suspicion of the Macrobid. Too much of a coincidence. I had no shortness of breath before taking this. I only had a bladder infection for heavens sake! He said he would look into it and look into it he did. Sulfa drug. Could I be allergic to sulfa he said.

I was discharged in January of 1995 along with a perscription of Theophylline, bronchodilator, holding off for now he said on corticosteroids. I was told on our next visit, we would discuss physical rehab and what to do next. What did he mean next? Where was he going with this? On the way home from the hospital, I just could not let go of this sulfur connection 'cause I was really leaning toward Macrobid... When we pulled up in our drive I gave a sigh of relief. It was good to be back home.

Good night...

Monday, April 3 2000

My husband and I and my son moved into our present home in August of l994. I fell in love with it the moment my eyes set on it. I've always wanted a 2 story home but never dreamed I would one day curse each and everyone of those damn stairs. I have a name for each one of them today.

After my first ER discharge, I went about my life. My lungs told me when it was damp, humid and I did my number of 'puffs' and kept my lab appointments. I was aware of some tightness in my chest but I brushed it off.I never presented a wheeze. I didn't have a cough. I was beginning to believe there had been a mistake in my diagnosis. I was told I wasn't presenting the symptoms of any one disease. I couldn't find anything to compare myself with and neither could anyone else for thar matter.

I've always been a overactive person and always took pride in my health, especially when I stopped smoking. Cold turkey I might add. So the way I took the whole ER scene was-'if its not broke-don't fix it'...

Wednesday, April 5 2000

The next morning the hospital called and I was told to return to X-ray for a repeat mammogram on the right breast(?) It had been two years since my last mammogram but I had a physical examination earlier and nothing was detected so I wasn't too concerned. I was taken right away and then asked to wait while the radiologist read the film. It was the waiting I dreaded the most. I wished I could be anywhere else but there waiting...

A suspicious mass was detected and I was advised to have a biospy. I didn't have time for this I kept telling myself... I was going to have a lung transplant not a mastectomy! Sounds childish doesn't it? A little premature on my part wouldn't you say? Of course I would have the biopsy!

The mammotom biospy was performed the following day and a consultation with the oncologist. "It" was there,(hiding); stage I carcinoma. It was explained to us radiation would only damage my lungs further and a right modified mastectomy was needed. I didn't like the direction this was taking me and then I remembered a quote from Robert Schuler: "Never give up. Tough times never last but tough people do."

I had my surgery on my husband's 52 birthday.

Thursday, April 6 2000

My care and release from the oncologist went smooth. I thank God it was low risk stage I breast carinoma. Relapse risks minimal.

After some recovery from home, I was told the sad news by some members of the Transplant Team. I was no longer considered a good candidate for a lung transplant. The decision was made.

I asked myself, "Where does Amy Jo go from here?" This was my assessment: Instead of waiting for someone to give you courage-you learn that you really had it all along. And you learn that you really can endure...That you really do have worth. And you really have much to give. And you learn with every obstacle, you learn to build all your roads on today. And one thing more, you learn that you really are strong.

Friday, April 7 2000

I once read when one door closes on you, you open another one. I just needed some time to cry and grieve. Little did I know how severe my depression would become. Thank-you Jesus for my loving and supportive family. Most importantly, your watchful eye.

My meds consisted of:Prednisone, Dilitiazem;(calcium channel blocker), Lasix, Potassium, Atrovent Inhaler and Azmacort Inhaler.

When Thanksgiving arrived, my normal weight of 120 lbs. had blossomed to 165 lbs. Needless to say, I was miserable. I had to come off the prednisone! My doctor told me I could not suddenly stop using it. By then, I had been on it almost one year. I began to tamper off prednisone.

In January of this year lab tests showed low levels of ACTH (adrenal gland) and cortisol. I'm currently on corticosteriod to reduce swelling and Fludrocortisone to treat my low levels. Some of this I believe is stress related due to a major infection and my breast surgery. I will have lab work again next week. It's amazing how the sense of well being has returned and a weight loss of 15 lbs. It's wonderful.

Perhaps this is a reminder for me but I sure hope others will benefit. We all have it in us... It's an inner strength placed there only by God. When we suffer adversity we not only know what its like, but we have a bond with those that suffer it.

Here I go quoting again:-) A man named Henri Nouwen once said: "The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing, and face us with the reality of our powerlessnes, that is the friend who cares." Everyone needs a friend...

We are all teachers, or should be. Anyone who relays experience to another person is a teacher. Not to transmit your experience is to betray it. (Elie Wiesel)

Good night.

Saturday, April 8 2000

With the encouragement of Teddie, I actually have one week in my Diary. I've poured it out a little bit, haven't I? I know illnesses happen to us; (that's an under-statement, isn't it?) and at the time they may seem horrible, painful and unfair but I believe everything happens for a reason. Without the bad luck,what would test our soul?

I've counted 5 years and 4 months of this disease. Might as well count in numbers, doctors do...I wouldn't wish this on my worst enemy. And I would be lying if I didn't tell you this: I want my old life back!

I refuse to become an invalid. I have reason to get up in the morning. It's called living with the living. Even though I'm limited to what I can do, I want my presence known to everyone in our home.

I've started a list of questions to ask my doctor next week. First on the list:What are my options now? My breathing has worsened and only at total rest do I feel better! My oxygen is up to 2.5 at rest and 3 with exercise. It's the quality of life I seek not the quantity. Please help me...

My question tonight is for you Diary:If we are only here for a short time, then everyday should count for something, right?

Sunday, April 9 2000

Today we rode out of the city to a family dinner. This was the first time I've left the house in over 3 weeks. Just what the doctor ordered as the 'ole saying goes.. I made a promise to myself today to continue to make the extra effort to leave the house if only for my mental health. I have plans to go shopping this week with my companion wheelchair. I haven't been in a grocery store in months. Although it is very exhausting, and every part of me aches, my body is telling me I'm still alive.

Tomorrow I talk with my cardiologist.

Thursday, April 13 2000

I've missed you my Dear Diary. Today I feel like it's the "Beginning of the Rest of My Life". With Teddie by my side we had our 'Day in Court'...My doctor was handed information on Flolan and a typed letter by me. We gave this to him before I was called in a room. My plan was to give him some uninterrupted reading time.

I believe he was impressed with PHCentral and expressed the usefulness of the website. Going over my history and medicines we viewed my current treatment of CCB's (calcium channel blockers), which relax the smooth muscle in the walls of the heart and blood vessels and reduces blood pressure thus eases the strain on the heart. My therapy on my current meds. unfortunately have not relieved my symptoms. Since I'm no longer a candidate for a lung transplant, I'm desperately looking for another option, any option...

Flolan may or may not stop my progression...but if it can relieve my shortness of breath and enable me to be more active I'm ready. In 1995, the FDA approved Flolan for the treatment of PPH.

Right now I will continue my medicine for the Adrenal Insufficiency.Lab work was completed today to recheck last month results since my levels were so low. I'm sure I'll remain on Cortisone for awhile.

Now we'll wait and see if it will be necessary to schedule a third right heart cath with my Cardiologist to see what my pulmonay pressures are.

It's been a long day but a rewarding one with "New Hope" on the horizon.

Good night.

Saturday, April 15 2000

I'm responsible for what I do, no matter how I feel.I must remember to put myself in another's shoes. If my words hurt me,it probably hurt the other person too.

If I've said any unkind words to anyone, I'm sorry. I must remember, even when I have pains, I don't have to be one!

I pray tomorrow will be a better day...

Tuesday, April 25 2000

Things have been placed on hold this past week by the doctors. In this battle of life...isn't it great we have people who care? So please excuse me if I vent! Maybe I've been unfair or impatient to want something to happen and improve my health! I mean it is my life by the way, Hello! I've only been waiting 5 years and 4 months for a solid name for this dreadful disease.

My health has slowly deteriorated to right now I can barely (with 02) go from room to room. Oh, I've made all my doctor visits on time, did everything I was told, tried this medicine,"been there-done that." Maybe that was my mistake...Where do I place all this blame? Where do I place all this anguish? No matter how tough and strong we show the world we are there's some weakness we suffer inside alone. It took courage for me to say that believe me but I am being truthful.

So maybe we should learn from the mistakes of others, we certainly can't live long enough to make them all ourselves. And who wants to anyway!

I pray tomorrow will be a better day for my family.

Thursday, April 27 2000

I talked to my primary care nurse on the phone this morning and was told I must stay on the cortisone for another month. My lab work showed some increase in my corisol level but not safe enough for me to off. What a disappointment this is!

I now have my doctors appointments in my pocket...next Tuesday I see my pulmonary specialist and my heart doctor on May 10th.

You know what? I hear this little voice telling me I've fallen in the cracks somewhere and I got lost in the mad rush for a lung transplant! And the more I venture back, I remember no one ever gave me any other options initially. It's really been a bit hard to swallow and digest. I've made a promise to myself to carry serious questions with me next week and demand truthful answers.

Tonight, I have no one liners or quotes or verses to share diary, whatever I learn at the doctors office...I pray the jokes not on me!

Good Night...

Saturday, April 29 2000

Saturday morning and it seems all of our neighbors are out cutting grass. No open windows here. I use the A-C and keep the outdoors-outdoors. Just another compromise "We" lung suffers have to do. As much as I dearly enjoy and miss sitting on our deck, I breathe easier inside during those outdoor chores. Pollen is another trigger to avoid.

I forgot to mention on Thursday I was told to increase my ccb's (Diltiazem) from 240 to 360 mg. I hope this decreases my heartbeats and chest pain on exercise.

Before I say Good Night, I want to say something about my wonderful husband, Teddie. From the first day we met, Teddie taught me to hold my head up high because he said I had every right to. He told me I was a great individual and he believed in me so I should believe in myself. Teddie helped me develop trust and its importance to love. And with teaching me to love, he in return loved me unconditionally. He also taught me to open my heart and eyes to things I would never have seen or felt without them...

And so I will continue to believe and appreciate every moment I'm alive and yes take from it everything that I possibly can to make every day count for Teddie and my family.

Wednesday, May 3 2000

Yesterday was a rewarding one with my pulmonary doctor. Things are moving along for a possible option for me. Which one it will be I'm not certain. Next Wednesday with my cardiac doctor we may be able to use last years right heart catheterization(RHC). But if another cath. is needed then so be it. As soon as all of my work-up is gathered then we give it to Dr. Robert Bourge here in Birmingham for comparison.

In the mean-time I have sought out any info available to me on pulmonary hypertension. One place that's close to my heart is the PHC Message Board. I would recommend this to any family going through this turmoil. These brave folks identify first hand and feel every emotion and share every tear. I consider it a privledge to be part of each and everyone of them. Yesterday I posted a question if anyone had a spiritual awakening before, during and after PH. I was pleased to see the responses.

Here's a question for my diary... Where is God? He was just a little boy, on a week's first day. He was wandering home from Sunday School, and dawdling on the way. He scuffed his shoes into the grass; he found a caterpillar. He found a fluffy milkweed pod, and blew out all the "filler".

A bird's nest in a tree overhead, so wisely placed on high, was just another wonder that caught his eager eye. A neighbor watched his zig zag course, and hailed him from the lawn, asked him where he'd been that day and what was going on.

"I've been to Bible School," he said and turned a piece of sod. He picked up a wiggly worm replying, "I've learned a lot of God." "M'mm very fine way,"the neighbor said,"for a boy to spend his time". "If you'll tell me where God is, I'll give you a brand new dime."

Quick as a flash the answer came! Nor were his accents faint. "I'll give you a dollar, Mister, if you can tell me where God ain't."

Friday, May 5 2000

This has really been a bad day.....

I've been maintaining 2.5% liquid oxygen at rest. Walking through the house from room to room really lowers my sats.(saturation level) My doctor approved increasing to 3% on activity. The one thing that scares me is too much oxygen. One must be aware of C02 build-up. Very dangerous. When I exert myself, my heart rate increases and pounds so hard. Add the chest pains feel like someone is siting on me. When I walk down the hall I'm so short of breath I must stop to gear-up to come back up the hall to our kitchen. I'm now fighting to keep myself from becoming bedridden...I keep telling myself we all have a bad day now and then and tomorrow will be a better one....

It has taken me a long time to accept my limitations. There was a time when I would not ask a soul to help me. I thought I could do it all. Not only was I stubborn but hard headed as well. There is no instant replay in life.

There is much in life that doesn't have to be done instantly. There are phone calls that don't have to be returned immediately. There are many difficult problems and decisions that actually improve when they are left to simmer a little while.

My belief is the rhythm of life is orderly but fragile and if we keep that in mind we will hold the key to our own survival.

Good Night...

Tuesday, May 9 2000

Tomorrow I visit my cardiologist.

Our family celebrated my Mother's 82nd Birthday. My father passed away nearly 30 years ago and she never remarried. Eleven years ago she lost a 54 year old son and her 19 year old granddaughter (my daughter) on the same day. (unrelated deaths)

After living sometime with my brother and his family, we moved Mom to a assisted living facility close by. I had to come to terms with the fact I would need a caregiver myself and sadly I couldn't be one for her. She's comfortable and seems at peace. She's been a very good mother to us.

My brother and I began the 'break-up' and sale of the house our parents had lived in for many, many years. There were items she wanted us to divide and she wanted me to have her lighted china cabinet and china. These dishes were taken out at Mom's only on special occasions. I began the same tradition, proudly displaying the china in the lighted china cabinet, taking them out only on special occasions.

I remember as my health began to deteriorate the meaning of life took on a whole new perspective. The "Things" that I thought were so important were not important anymore. "Someday" and "One of these days" were losing their hold on my vocabulary.

Two years ago when I came home from one of my ER trips to the hospital, I remember looking at the china as the light shined on them in the china cabinet. Then I began to question myself... why was I saving dishes or anything for that matter for a special occasion?

The dishes are now stacked in the kitchen cabinet, we use them every day. I'm not "saving" anything. Everyday I'm alive is a special occasion. And every morning when I open my eyes, I tell myself that it is a special day.

Everyday, every minute, every breath truly is....a gift from God.

Good Night.

Thursday, May 11 2000

Hang On!

Yesterday after leaving the doctors' office I tried to give a sigh of relief. I told myself finally I've been heard! I've reached past today, and tomorrow I have it in my hand. My records will be delivered to Dr.Bourge's office immediately. We will be called after they review them, so now we wait....

On the trip home, Teddie and I went over what was discussed with my doctor and it scared me. I want to keep my spirits high but this feeling of desperation is overwhelming. I looked up the word desperation in our Webster Dictionary and it was defined as- 1: a loss of hope and surrender to despair 2: a state of hopelessness. That's not the way I want to feel because that's an attitude.

I'm not the only one whose had to push past the impossible with one fist pounding on the door. I have already learned of one brand name called Flolan that is used for the treatment of PPH. And when that's combined with conventional therapy remarkable improvements happen... How wonderful it would be to breathe normally once again without shortness of breath! And to be able to go barefoot in the park and walk and walk and walk without my oxygen tank by my side that would be a prayer come true. And if it's decided another treatment would be better for me, then that's okay too.

I remember reading something once about 'hanging on'. It said: When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give-up then, for that is just the place and time that the tide will turn.

P.S. Poacher Jo, Good Night...

Wednesday, May 17 2000

Gone Fish'n...

Teddie and I packed our belongings last Saturday and locked-up the house and had a four day holiday deep in the woods in an 1889 cabin. (All within a 30 mile radius to my doctor of course)

This was no spur of the moment thing, although those trips are just as exciting. Reservations were made back in October of '99. I actually said to myself, "that's a gutsy thing to do!" It was proof, 'positive thinking' is the best route to go.

On Mother's Day, 23 family members and friends gathered to celebrate and share the day in the cabin. Childhood stories were told and a secret or two was spilled...and oh the sweet sound of laughter as it shined on everybody. I read somewhere once that said, "people crave laughter as if it were an essential amino acid." Sunday was truly a blessing to behold.

Monday and Tuesday "Mother Nature" belonged to Teddie and myself. We discovered little hidden treasures all around us. We watched a blue bird build her nest. We used up all our cracked corn for the deer and the bag of black oily sunflower seeds for our cute-feathered friends. They were our company the whole time we were there. Their singing before 5:00 a.m. started our day. Stop sometime and witness a sunrise or sunset... These are truly the simple things in life, they hold no price tag...they are free. What a bargin for mankind!

Our time had ended and before we closed the door behind us, I made sure I packed our memories to take back home. Teddie and I have learned another valuable lesson, we've learned to stop making a living, instead we are making a life. Together we live to make life less difficult for each other. And together, we are going to win this battle!

Thank-you Teddie for a trip I will surely hold dear to my heart. You used all your muscles to handle my large oxygen tanks and our cartons of food and linens and towels without one complaint. I wish you a good sleep tonight. I Love You with all my heart and soul.

Thank-you's go to my twins, Lee and Kay. The dozen long-stem roses are still just as beautiful as the day they were delivered in the vase before Mother's Day. You both are precious to me and I love you both very much.

P.S. Next time you go on a trip, don't forget to put the sign on your door: GONE FISH'N....

Good Night.

Friday, May 19 2000

Yesterday I returned to my primary care doctor for my monthly lab work. With fingers crossed, maybe,just maybe, my cortisol level will have increased from the last month. I think I mentioned before what long standing prednisone can do to the adrenal gland and cortisol is normally produced by this gland.

Cortisol belongs to a class of hormones called glucocorticoids, which affects almost every organ and tissue in the body. Cortisol's most important job is to help the body respond to stress. Among the other vital tasks, cortisol: helps maintain blood pressure and cardiovascular functions; slows the immune system's inflammatory response; helps balance the effects of insulin in breaking down sugar for energy; and helps regulate the metabolism of proteins, carbohydrates and fats. In the exact words of the doctor,"Amy Jo, your battery ran out of juice!" In my exact words, "Who put in the cheap battery?"

My treatment involves replacing the hormones that my adrenal glands are not making. Cortisol is replaced orally with hydrocortisone tablets, taken twice a day. Also, once a day I take one fludrocortisone tablet. This treatment does have its side effects and the adverse effects can be numerous, fortunately most are reversible. Although I do have a rounded (moon face) puffy face, "fat pads" below my neck and on the back of my neck (camel back) including the dreaded weight gain. (some of this is I know is "left over" from the prednisone) Perhaps a double-edge sword, but once again, my life has been saved with steriods.

My appearance has changed...I look like one of the Munchkin's in the Wizard of Oz. Teddie keeps telling me I'm more beautiful now then when he first married me. I told him I liked my Disney movie version of myself alot better then his Disney movie version of Pinocchio caught lying!

Teddie, your right, there's no place like home...

Saturday, May 20 2000

Some days are harder than others...

Well Diary this is the beginning of a long day. Episodes of shortness of breath at rest...The weather is cloudy and humid so this may have something to do with it. I've noticed with only slight exertion my heart begins to pound so hard and this crushing, squeezing sensation comes about at the same time when my need for more oxygen demands it. The more oxygen my lungs need-the more- "it" tells my heart,"pump harder, pump harder." I remember one time a paramedic asked me what came first, the shortness of breath or the fast heart rate. I said, "Let me ask you a question...what comes first, the chicken or the egg?" That's why it's so hard for some of us to give a satisfactory answer.

I know it's the weather! Why not the weather? Doesn't everyone blame everything on the weather? I have some components of exercise induced asthma so I use Atrovent as my inhalant; 4 puffs, 4 times daily. It gives some relief but not as supportive as it used to be.

When I'm sitting or laying down I can relax and read my favorite book and travel anywhere in the world. I can also go to my 'puter and surf the night away and truly feel comfortable. Then with slight physical activity the monster awakes and shows his ugly face...we may have to increase my oxygen soon...

This past week we talked with my cardiologist on this progression. It was explained to us again, when the abnormally high pressure, or pulmonary hypertension, will result in restricted flow in the small blood vessels of the lungs, which places a strain on the right ventricle of the heart. Over time as in my condition the right ventricle becomes overworked and enlarges. Eventually, the right-side of the heart may fail completely.

I expressed my fears to him on the stage 1V. We went over the New York Heart Association ratings. Class 1- Patients with no symptoms. Ordinary physical activity does not cause fatigue, palpitation, dyspnea, or anginal pain. Class 2- Patients who are comfort- able at rest, but have symptoms with ordinary physical activity. Class 3- Patients who are comfort- able at rest, but have symptoms with less than ordinary physical activ- ity. Class 4- Patients who have symtoms at rest.

I've noticed when I allow troubles to get me down, all I'm doing is empowering them even further. Does that make any sense?

Even though I mourn for yesterday-yesterday is gone and tomorrow hasn't been born yet.

I think I've won my battle for today...

Good Night.

Sunday, May 21 2000

Yesterday-Today-and-Tomorrow.....

I would like to add this worthy anonymous poem to where I left off last night. *There are two days in every week about which we should not worry. Two days which should be kept free from fear and apprehension.

One of these days is yesterday with its mistakes and cares, its faults and blunders, its aches and pains. Yesterday has passed forever beyond our control. All the money in the world cannot bring back yesterday. We cannot undo a single act we performed. We cannot erase a single word we said. Yesterday is gone...

The other day we should not worry about is tomorrow. With its possible adversities, its burdens, its large promise and poor performance. Tomorrow is also beyond our immediate control. Tomorrow's Sun will rise, either in splendor or behind a mask of clouds, but it WILL rise. Until it does, we have no stake in tomorrow, for it is yet unborn...

This just leaves only one day...today. Any person can fight the battles of just one day. It is only when you and I add the burdens of those two awful eternity's..yesterday and tomorrow that we break down! It is not the experience of today that drives people mad. It is the remorse or bitterness for something which happened yesterday and the dread of what tomorrow may bring.

Let us therefore live one day at a time...

Monday, May 22 2000

Too much heavy baggage..

I had not really planned on taking another trip this year, and yet I found myself packing rather hurriedly. You see, this trip was going be unpleasant and I knew in advance that no real good would come of it.

I'm talking about my annual "Guilt Trip." I got tickets to fly (I went alone) there on "WISHIHAD" airlines. It was an extremely short flight. I got my baggage, which I could not check. I chose to carry it all by myself...all the way! It was weighted down with a thousand memories...of what might have been.

No one greeted me as I entered the terminal to the Regret City International Airport. I say international because people all over the world come to this God forsaken dismal town! As I checked into the Last Resort Hotel, I noticed that they would be hosting the year's most important event, the infamous Annual Pity Party. I wasn't going to miss that great social occasion believe me.

Many of the towns leading citizens would be there. First there would be the DONE Family...you know, Should Have, Would Have and Could Have. Then came the I HAD Family. You probably know ol'WISH and his clan. Of course, The OPPORTUNITIES would be Present, Missed and Lost.

The biggest family would be the YESTERDAY'S. There are far too many of them to count, but each one would have a very sad story to share. Then Shattered Dreams would surely make an appearance. And IT'S THEIR FAULT would entertain us with stories (excuses) about how things had failed in his life, and each story would be loudly applauded by DON'T BLAME ME and I COULDN'T HELP IT!

Well, to make this long story short, I went to this depressing party...knowing good and well there would be no real benefit in doing so. And, as usual, I became very, very depressed! But, you know what? As I thought about all of the stories of failures brought back from the past, it suddenly occured to me that this trip and now this "PITY PARTY" could be cancelled by ME! I started to truly realize that I did not have to be part of any of this, let alone be there for that matter. I didn't have to be depressed. One thing kept going through my mind. I CAN'T CHANGE YESTERDAY, BUT I DO HAVE THE POWER TO MAKE TODAY A GOOD DAY. I can be happy, joyous, content, encouraged, as well as encouraging.

Knowing this, I left the City of Regret immediately and never looked back. Am I sorry for mistakes I've made in the past? YOU BET I AM! Do I pray to God to heal my PH? YES! So, if your planning a trip back to the City of Regret...please cancel all your reservations now. Instead, take a trip to a place called, STARTING AGAIN TODAY. I liked it so much...that I have now taken up permanent residence there. My neighbors...the I FORGIVE MYSELFS and the NEW STARTS TODAY are very helpful. By the way, you don't have to carry around that heavy baggage either, because the load is lifted from your shoulders immediately on arrival. Believe me!

God bless you in finding this great town. If you can find it...then you will know, it's been there all along, it's in your own heart...please look me up. I live on ICANDOIT street.

Good Night...

Thursday, May 25 2000

Lord, give me patience...

Yesterday we were off again to my cardiologist. With his heart in his hands, I was told "we" needed to schedule one more test. In the morning at 9:00 a.m. I will have the dreaded PFT's again!(pulmonary function tests)...Anything that might increase my shortness of breath-including this testing procedure makes me anxious and this is dreaded by me. I will not sleep well tonight for sure. Although these tests are safe and when performed will not harm my lungs.

After displaying my disapointment on the "just one more test"...we talked about my persistent anginal pains, and I now have added to my medicine cabinet Nitroglycerine in the gel form. I will try anything to relieve these debilitating chest pains.

Since I'm complaining, another thing that is so empowering with this disease...the extreme tiredness or fatigue that never seems to go away. I find myself constantly apologizing for this to my family.

Dear Lord, sometimes the pain hurts so much I can hardly bear it. I really want to do so much more with my family, to go places and do all the things as before but I just can't. There are so many people like me in this world and I'm ashamed to complain. I know that as each one looks to you for healing it will come. It will come in the form of the pain being relieved...or the grace to endure it all. Please, please, continue to help me understand that healing does not always take place in the way I would like...and one more thing Lord, help me to be an encouragement to others that you bring into my life who are suffering as I am. Excuse me Lord, may I ask for one more thing? Guide and help me see that things maybe hopeless but I hold the strenghth and determination to make them otherwise in my life. Amen...

Sunday, May 28 2000

A loving heart to rely on...

These past several days have been difficult for us. The nitroglycerin has been a 'heaven sent.' It's in ointment form and applied to the skin. I've been directed to apply once daily. I return to the hospital tomorrow on Memorial Day (outpatient).

Teddie,I thank God for you...because your here to listen when I need to talk, to give encouragement when I want to give up. You're always here to share my burden when it becomes too heavy, and most importantly, to love me when I feel unlovable.

Darling, you are all things in life to me, my morning sun, my evening star, more than I ever dreamed you'd be, "My Husband...Lover and Best Friend" whose "strong arm" I lean on, "tender shoulder" I cry on, "patient ear", I sound on and "firm chest" I rest on.

I will love you for the rest of my life.

Monday, May 29 2000

STOP AND SMELL THE ROSES..

Going into the big city was rather pleasant with less traffic due to the Memorial holiday today. Hopefully I have completed the remaining tests. If not, my doctor can do the next PFT's himself!

It's always rewarding for Teddie and me when we have technicians in the hospital we know. I've always tried to make it a point to learn something about a person I come in contact with that I don't know. On this given day we happened to know the tech. We listened to her as she told us about death and dying in ICU. She told us of grieving family members willing to give anything to have their loved ones back. The words of, "If we had only known this was going to happen." Or, "If I could only go back and change things."

Returning home my mind wandered to an essay written by Robert Hastings, "The Station." I believe it was his best. By the way, he passed away acouple of years ago. But I do know, his work will be read and appreciated for many years to come. Ironically, what we discussed in the hospital and now remembering this essay has connected as follows:

Tucked away in our subconscious minds is a vision in which we see ourselves on a long journey that spans an entire continent. We're traveling by train, and from the windows, we drink in the passing scenes of cars on nearby highways, of children waving at crossings, of cattle grazing in distant pastures, of smoke pouring from power plants, of row upon row of cotton and corn and wheat, of flatlands and valleys, of city skylines and village halls. But uppermost in our minds is our final destination-for at a certain hour and on a given day, our train will finally pull into the station with bells ringing, flags waving and bands playing. And once that day comes, so many wonderful dreams will come true. So restlessly we pace the aisles and count the miles, peering ahead, waiting, waiting, waiting for the station. "Yes, when we reach the station, that will be it!" we promise ourselves. "When we're 18.....win that promotion.....put the last kid through college.....buy that Mercedes-Benz.....pay off the mortgage.....have a nest egg for retirement. "From that day on, we will all live happily ever after. Sooner or later, however, we must realize there is no station in this life, no one earthly place to arrive at once and for all. The journey is the joy. The station is an illusion-it constantly out distances us. Yesterday's a memory; tomorrow's a dream. Yesterday belongs to history; tomorrow belongs to God. Yesterday's a fading sunset; tomorrow's a faint sunrise. Only today is there light enough to love and live. So, gently close the door on yesterday and throw the key away. It isn't the burdens of today that drive men mad, but rather the regret over yesterday and the fear of tomorrow. "Relish the moment" is a good motto, especially when coupled with Psalm 118:24. "This is the day which the Lord hath made, we will rejoice and be glad in it." So stop pacing the aisles and counting the miles. Instead, swim more rivers, climb more mountains, kiss more babies. Laugh more and cry less. Eat more ice cream. Ride more merry-go-rounds. Watch more sunsets. Life must be lived as we go along.

Good Night

Wednesday, May 31 2000

Tomorrow a new month...

June holds two very special days for this family. First, on the 6th, Kay and Lee will celebrate their 26th Birthday, and the second event, our Wedding Anniversary. Special things are planned and I cannot wait.

It's almost dinner time and I do try to help Teddie in the kitchen although it is becoming more difficult. I'm rather proud of him and also amused at the same time. He's actually doing quite well, look out Martha Stewart...

I've been on bedrest, and it's so difficult for me to stay there! The nitro has made a world of difference. I notice close to the time to re-apply I have a light squeezing in the chest. Sometime ago in one of my entries, I believe I called one of these symptoms "the monster", well, I've changed the name...I now call my PH, "THE BEAST." I have no love for him and he has no love for me!

I have an old Gaelic Blessing I want to share: May those who love us, love us, And those that don't love us, May God turn their hearts, And if he doesn't turn their hearts, May he turn their ankles so we'll know them by their limping.

P.S.Is this the tomorrow you worried about yesterday?

Good Night.

Thursday, June 1 2000

Questions to think about...

Is anybody happier because you passed his way? Does anyone remember that you spoke to him today? Can you say tonight, in parting with the day that's slipping fast, that you helped a single person of the many that you passed? Is a single heart rejoicing over what you did or said? Does the person whose hopes were fading now with courage look ahead? Did you leave a trail of kindness, or a scar of discontent? As you close your eyes tonight in slumber, do you think that God will say, "You have earned one more tomorrow by the work you did today?

Good Night.

Sunday, June 4 2000

Driving to the country...

This morning we left early to spend the day with Lee's sister. It's such a pleasure ride to their place in Greenpond. Kay and Dave's home sits on 30 acres. The beauty is untouched by developers. It's not unusual to see deer and wildlife come into their yard from the wooded area. Planting and watching your own garden grow is a miracle in itself. A simple life that needs no sleeping pills at days end. Even though we never need an occasion to be together, this family gathering was special. We celebrated Lee and Kay's 26th Birthday (June 6) with a huge Bar-B-Q. These are my twins...my special children.

My initial reaction to the doctors upon learning Kay had a heart murmur (continues sound) and in guarded condition, and that they had to rush Lee to the High Risk ICU was a total feeling of powerlessness. My two babies, my sweet babies, began a very stormy infancy...

Good Night.

Monday, June 5 2000

gentle heroes...

I was devastated as a mother. I felt responsible, and for a time, blamed myself. Maybe God was punishing me for not being good enough. What did I do to cause this? I've definitely been transformed through all of this. I've learned how vulnerable we are, that our lives truly are in God's hands. I no longer blame God.

A mother's love says there is no obstacle too big when it comes to her children's health. But reality says something else. The doctors gave the diagnoses. Kay was 13 years old when she had her 7th heart surgery. All of these were palliative operations to bring more blood flow into her lungs. Her heart is too complex for any type of total correction. She's doing by far better than ever expected. Kay's very independent and spirited. She has my absolute admiration.

We were told Lee would not be able to do "certain things..." I was determined to prove them wrong as he developed. Lee continues to amaze everyone and he never meets a stranger. He attends a special adult workshop during the week and never forgets to give me my goodbye kiss in the morning before the van picks him up. It's so refreshing to know I remain his favorite girlfriend. He is well disciplined and a joy to be around.

Good Night.

P.S. It's my privilege to be your mother.

Tuesday, June 6 2000

On the 26th Year of My Birth & Life. JUNE 6, 2000

To My Mother, The one who gave Me Life. I thank you. To My Mother, The one who carried Me for 9 Months. I thank you. To My Mother, The one who Pushed Me into this World. I thank you. To my Mother, The one who has shared all My "Heart"Aches. I thank you. To My Mother, The one who is Always by My Side. I thank you. To My Mother, The one who is Always My Angel. To My Mother, Yesterday, Today and Tomorrow You will always be My Mother. I thank you. To My Mother, Thank You for My Life and World. For if it wasn't for The Woman I call Mother, I would not Be Here. I thank you. My Life, My Love, My World and My Angel. "MY MOTHER"

I LOVE YOU ALWAYS AND FOREVER, YOUR DAUGHTER, KAY

Wednesday, June 7 2000

Another obstacle to climb...

We were informed today I cannot participate in the pill studies involving Beraprost (Prostacyclin) under Dr. Robert Bourge here in Birmingham, Alabama. The reading of my PFT's from last week revealed FEVl ratio.33%. The procotal for the clinical trail by the drug company is .50% or greater.

It's so easy to get lost and overwhelmed in all of this chaos and I keep asking myself, "Whose life is this?" How can total strangers dictate what therapy can and cannot be used on me? It's tough on one hand trying to remain calm and on the other hand remind myself that this is one more duck that gets kicked out of the row! Who said life was going to be fair, or that it was even meant to be fair?

As I wrestle with this, in a practical sense, I really have only two options when it comes down to it! I can make it a positive force and challenge myself to go forward or I can add insult to my injury and give-up! I refuse to take the cowardly way out. I have my own protocol for surviving.

I didn't choose my illness. I didn't ask for this incurable disease. But I can choose my attitude toward it! Since it is happening to me, I can use it and learn from it and shape it into a positive force in my life however long that may be....

P.S. Did you know life is 10% of what happens to us, and 90% of how we respond to it?

Good Night

Thursday, June 8 2000

Breakthrough over the horizon...

There was a great deal of excitement last week on an article from Toronto. It appears Toronto scientists have discovered a way to reverse the clogging of blood vessels in lungs and this could one day be applicable to arteries and other vessels.

A study published in the May 29th issue of Nature Medicine opens the possibility of a new treatment for pulmonary hypertension.

Researchers at The Hospital for Sick Children were able to completely reverse pulmonary hypertension in rats using a synthetic chemical that opens up a blood vessel and keeps it from clogging.

Dr. Kyle Cowan, who did the study as a doctoral student at Sick Kids said, "Not only did it stop the progression of the disease, but the blood vessel reverted to a normal condition."

"This may be a very effective strategy to prevent pulmonary hypertension, which is a rare and fatal disease," said Dr. Marlene Rabinovitch, head of the Cardiovascular Research program at Sick Kids, who supervised the research.

As much as all of us pray for a cure, we will have to wait... Dr.Rabinovitch, who also teaches at the University of Toronto estimates a treatment will be available for the public within five years, only if a drug company is willing to develop their strategy results into a drug.

There is definitely "HOPE" and no one should lose sight of this even if there is a bend in the road...

Friday, June 9 2000

A Bend in the Road....

When we feel that we have nothing left to give And we are sure that the song has ended, When our day seems over and the shadows fall And the darkness of night has descended, Where can we go to find the strength to valiantly keep on trying?

Where can we find the hand that will dry The tears that the heart is crying? There's but one place to go and that is to God, And dropping all pretense and pride, We can pour out our problems without restraint And gain strength with Him by our side.

Together we stand at Life's crossroads And we view what we think is the end, But God has a much bigger vision, And He tells us it's only a bend, For the road goes on and is smoother, And the pause in the song is a rest And the part that's unsung and unfinished Is the sweetest and richest and best.

So rest and relax and grow stronger...Let go and let God share your load. Your work is not finished nor ended...You've just come to a bend in the road. (Helen Steiner Rice)

P.S. This beautiful poem seems to recharge my emotionally drained batteries and gives me needed strength when recharging is in demand.

Sunday, June 11 2000

He only took my hand...

Today is Sunday and it has been a peaceful day. My chest pains have lessened in severity thanks to the nitro cream. The only (manageable) side effect is the headaches. I will accept this as my trade-off.

I read something this morning that I've hidden away for a long time. It was a 1988 newspaper clipping of a local boy winning a bicycle. This is only one of many, many precious memories I hold in my heart... Darlene worked at Winn Dixie and I was manager of a retail store and the stores were joined side by side. She was always popping her head in and yelling,"I Love Ya Mamma."

During Thanksgiving Winn Dixie held a drawing for a lucky boy or girl to recieve a brand new bicycle. For weeks this 12 year old boy shopped with his Mom. On those visits, Darlene helped him print his name on each entry slip and within a very short time, they became very close buddies. Darlene called his home to be sure he would be there on the day of the drawing. His name was Bobby and he had Down's syndrome and on drawing day, Bobby won the bike! One may question the validity of the winner, only Darlene and one other person knows for sure but when I heard the news, I went next door and called to Darlene, "I'm so very proud of you." On December 23, Darlene died at age 19.

Last night....while I was trying to sleep, my daughter's voice I did hear. I opened my eyes and looked around but she did not appear. She said, "Mamma, you've got to listen, you've got to understand, God didn't take me from you He only took my hand. When I called out in pain that night, the instant that I died, He reached down...and took my hand and pulled me to his side. He pulled me up and saved me from the misery and the pain, my body was hurt so badly inside I could never be the same. My search is really over now, I've found happiness within, all the answers to my empty dreams And all I might have been. I love you all, and miss you so, and I'll always be nearby, my body is gone forever, but my spirit will never die...And so, you must all go on now, live one day at a time, just understand, God didn't take me from you Mamma, He only took my hand."

I have no answers to my many painful questions on suffering and no one else does for that matter. When Bad Things Happen To Good People written by Harold S. Kushner was published, I ran to the book store and purchased his first print back in 1981. Searching, trying to make some sense out of two innocent childeren going through so much suffering with life threatening conditions. Then, 7 years later to lose a beautiful, full of life, healthy 19 year old daughter.

In the final analysis, I can honestly say, I pull my strength and courage from everyone in my life. It has been my experience that if someone does not suffer adversity, they will never appreciate what it is like for people who suffer it. When a person has been through adversity, they are more likely to have a kindlier feeling than those who have never suffered through hardship and trouble.

Good Night.

Tuesday, June 13 2000

suffering is so private and so painful...

Darlene was killed in a single car accident two days before Christmas (1988) and the beginning of 1989 there was a mental blank where the next several months must have been. All I remember is that after months of her death, I could shed no more tears; a great freeze had descended on my emotional system. I was not, as some people believed being strong and brave, I was merely in an extended state of shock. Perhaps it was nature's own kind of anaesthetic. How does one recover from the death of a child?

Months later something must have triggered the anaesthesia to wear off and I was left to wrestle with my reality this must be hell on earth. I simply did not want to live anymore. I could not face the prospect of letting Darlene go without me! I became more conscious that I had come to the end of the road in more ways than one. I had lost sight of myself as a person. I viewed the future with fear so what more was there to lose? Suicide even if I had planning, well...I was not far enough gone to accept that as an answer.

It was all a question now of learning to take this new pain into myself so that I could learn that although pain has the capacity to destory it may also be creative. To see my situation exactly as it was, to go forward from there and look at the miracles I had in Lee and Kay just as I once watched their own daily struggles, they were now passing on that lesson to me in how to survive.

And now I must try and measure up to my children's courage. This is what Darlene would want me to do. Somehow she was able to show me what should be done. She opened my eyes and I found my courage once again. And now that Darlene is no longer here, I owe it to her not to forget.

P.S. "Man is born broken, he lives by mending; the grace of God is glue." (Eugene O'Neill)

Good Night

Thursday, June 15 2000

Good-bye 50 foot line...

This morning I recieved a call from my primary care nurse to decrease the Fludrocortisone tablet by half. This certainly was welcoming news though my relationship with cortisone remains a love-hate affair. I return to the office next Thursday for follow-up bloodwork.

The barriers are down and the banners are up... That's what my home care provider is saying with my Puritan-Bennett HELiOS oxygen system I started this week. The uniqueness stems from the fact that it is worn by the patient. Not carried, not pulled, HELiOS is simply put on. My portable unit only weighs a mere 3.4 pounds filled! I carry a purse that weighs twice that, ask Teddie...

I have so much more freedom and this system provides me with long-term oxygen...duration of use is a long 10 hours at a flow setting of 2. My flow setting now is 3 so my approximate use time is almost 7 hours. Refills come from my reservoir cannister and takes about 40 seconds to fill.

This has been a troubling day for me. So I will add to my complaint list the talent of this BEAST to appear at any given moment with his attacks. Silently I've already promised myself to pay extra attention to Teddie and Lee in the morning.

P.S. I'm carrying a load today, its much too big for me. So Dear Lord, I was wondering if you could carry me. Amen

Saturday, June 17 2000

An added dimension...

Today with my encouragement Teddie made a trip to his brother's lake home to visit for the day. It was good for him to get-a-way and have time to himself. I do worry about him and only wish so much burden didn't have to be placed on him. I wonder how many people notice that the caregiver in the family shares and lives with the illness too.

It's been so hard for me to rely on my family for everything and be so dependent on them. I've always taken charge of my own life, the "roll-up my sleeves" and fight back kind of person! And now I have to accept this for what it is...so much is being done for me.

I honestly thought I could talk my way out of this disease. I've challenged and compromised my body so many times...I cannot get it to respond anymore. There are times I will not allow my thoughts to dwell on my illness though I will not avoid it either. I have exhausted myself in trying to keep it at bay.

I acknowledge full well I am not the only one suffering from this beast, (pulmonary hypertension) my family lives with it everyday. When this disaster first made its unwelcome appearance into our lives, shock and denial was the first, unavoidable, normal and right reaction. Our Courage flew out the window! We felt as though we were falling apart. But there is a time limit, and we alone can fix. And that is when we have to stand firm, for if once we allow it to get a real hold we are doomed.

I believe it is possible to recognize the point of no return, the moment when self-pity threatens to become a disease of its own. Self-pity can take away our courage and our will to happiness, but also our humanity and our capacity to love. It destroys us, and it destroys the friends who love and who want to help.

I read many years ago the value of what happens to us in life does not lie in the pain of it, but in what you make of it. Two persons can go through the same painful experience, one be destroyed by it, the other achieve an added dimension. The real tragedy we have when we suffer is the wasted opportunity.

There are truths which only sorrow can teach, and it is the source of the most important discoveries about life. It is in sorrow that we discover the things which really matter; in sorrow that we discover ourselves. As Ernest Hemingway is said to have written to Scott Fitzgerald, "When you get the damned hurt use it. Use it and don't cheat."

P.S. I do believe in my heart that suffering can teach ordinary people some extraordinary things.

Good Night

Sunday, June 18 2000

On Father's Day...

In loving memory of my Daddy: You are a thousand winds that blow, you are the diamond glints on the snow, you are the sunlight on ripened grain, you are gentle autumn's rain, you are the quiet birds in simple flight, you are the soft star that shines at night.

I miss you.

Wednesday, June 21 2000

Show a little tenderness...

Today I smiled and all at once things didn't look so bad. Today I shared with someone else, a little bit of hope I had. Today I sang a little song, and felt my heart grow light. I gently walked a little step, with not a cloud in sight. Today I worked with what I had and longed for nothing more. And what had seemed like only weeds, were flowers at my door. Today I gave a little more, and complained a little less, and in the giving of myself, I forgot my weariness.

I discovered today even when you think you have no more to give, when someone you know cries out to you, you will find the strength to help...

P.S. This question is for you diary: Did you know it's what you learn after you know it all that counts

Good Night

Monday, June 26 2000

Happy Anniversary My Love...

Dearest Teddie, I needed you and found your arms around me, laughed with you and seen clouds disappear. Leaned on you and felt your strength surround me. Shared rough times with you and felt no fear...Believed in you and seen my trust in you rewarded. I dreamed with you and seen many of my dreams come true...I loved you and seen every day grow sweeter...Each day I've found more happiness with you. And because of all the thoughts and feelings that only we can share, because of all that you alone bring into my world, I know we have the kind of love that really is unique...and I do know that the most important person in my life is you. Teddie, my darling, you are the one person I trust so completely and as we continue to walk life's path together...I'll bring you the sunshine, I'll comfort your fears, I'll gather up rainbows to chase all your tears, as long as forever my love will be strong, for as long as I live, I'll love only you.

P.S. Teddie, "One Hundred years together would surely be too few~~For every day~~All Over Again... I fall in love with you."

Tuesday, June 27 2000

Today...

My breathing with my oxygen was normal today...My heart didn't race and pound today...My chest pains were gone today...My ankles were not swollen today...All because I stayed in bed today...Today I cried.

Thursday, August 3 2000

You have touched my heart...

God must have known there would be times we'd need a word of cheer. Someone to praise a triumph or brush away a tear. He must have known we'd need to share the joy of "little things" in order to appreciate the happiness life brings.

I think he knew our troubled hearts would sometimes throb with pain at trails and misfortunes or some goals we can't attain.

He knew we'd need the comfort of an understanding heart to give us strength and courage to make a fresh, new start.

He knew we'd need companionship unselfish...lasting ...true. And so God answered the heart's great need with a CHERISHED FRIEND...like Poacher Jo.

P.S. I have some explaining to do, don't I?

Thursday, August 3 2000

We are survivors...

I was feeling this way when I made my last entry in June. I found it increasingly difficult to write and think. It wasn't so much the pain of remembering, but my determination to say only what I knew and to avoid all hint of self-pity, when in all reality I was being emotionally drained and didnot recognize it as depression.

Painful though it has been to write (and parts of it were so painful that if I hadn't forced myself to write them quickly I should never have written them at all) I've encouraged myself with the thought of the many people who have found these diaries and found our very existence helpful and I am truly touched by your e-mails. Perhaps if I continue my diary it will help a few more.

I should have seen the demons coming, but it was too late. The "Beware" sign was gone and it was an ambush. If we wrestle with our demons we exhaust what little energy we have and place ourselves even more at their mercy. Depression has many faces...

If we are in flight from ourselves we have nothing to offer other than our own emptiness, a human body in a hollow shell. However tempting the flight into unreality may be, there is no lasting comfort in it. Fantasy feeds on itself and turns into depression. After all, if we come to see ourselves as the ill-used victims of horrible fate, all our actions and thoughts will be controlled by bitterness and envy.

I understand now why we cannot run away from our own battles. We end up losing ourselves in the process and believe me you will lose your identity and your body will be a broken shell. I have discovered in the mist of all this confusion it just may be possible to catch an occasional glimpse of the quiet and calm, still center of our very own being, the essence of our true selves waiting to be re-discovered.

If we can stand still and let the battle of the storm do its worst, we may still summon the strength to move forward when it's bitterness force is exhausted.

We do live in a world we don't always understand. And the pain we have known and the conflict all of us have experienced gives us the strength to walk through life facing each new situation with courage and optimism.

I've learned that there are those whose love and understanding will always be there, even when you feel most alone. I have discovered enough goodness in others to know a kind word, a reassuring touch, and a warm smile will be yours every day of your life if you accept it. Don't forget to give these gifts back as well as recieve them.

Remember, those whose lives you have touched and whose have touched yours are always a part of you. Also remember each of us is different in our own way. Don't be ashamed to call upon those you admire when you are down. Be ready to help support and carry someone in need, they too may be hiding a broken heart.

P.S. Goodbye demons!

Tuesday, August 8 2000

A visit in Lee's world...

Lee is an out-and-out television fanatic. What he does at the Learning Center (where he is very happy) is shrouded in mystery. When we ask him what he's been doing there, he says, "Guess what, Tommy got in trouble again" or "Christie makes a racket and hurts my ears." It's no use hoping that he will give more information, because as soon as he reaches home, television is all he cares about.

Lee is instantly at home anywhere and with anyone. "What's your name? My name is Lee and that's my game," he says. He is completely trusting, believing that everyone he meets is a friend. No one has ever given him reason to think otherwise.

Here's the scene every morning after breakfast: he gathers up his music cassettes and places them in his backpack. (If they can't be found, we have a crisis on our hands. He goes into a fearsome frenzy. He can never be brought to understand that the loss is minor and temporary. Of course to him it is major and devastating. Little things like this upset his equilibrium completely.)

Along with his talent for singing there is another marvelous gift Lee has been given, (although he cannot tell time) he appears to have a built in time piece what tells him the next cartoon (7:30 a.m.) will produce the Van and the signal of the horn letting him know its time to go to the Center.

From the very beginning we could not bear the thought of separating from and being without Lee. It was my decision not to travel the road of planning his future. Some may say this was being selfish. So be it, call me a selfish mother. He is now grown and twenty-six years old, in many ways he is still a baby, with a baby's need of protection. We've accepted Lee long ago and his mental age didn't seem all that important to us. What is important is the joy that he has brought into our lives. He certainly has given us much more than we could ever give to him.

A journalist wrote this and it truly characterizes the happiness and open affection of so many of our adult handicapped children:

No outsider like myself is in a position to dictate where the limits of love lie, or to criticize those who find caring for the handicapped an impossible burden. But it is astonishing how often they draw-out from others, especially their parents, hidden reserves of patience and affection. How we treat them seems to be in some way our own and society's acid test. In them, as in the Child of Bethlehem, we see, uncamouflaged, the native value of humanity itself, helpless, vulnerable, possessing nothing. And they have so much to teach us. They are fearless:they have no enemies. They are trusting: their world includes no villians. They are loving:they do not doubt themselves. They are the ghosts of our lost innocence.

P.S. I can only bring myself to say that more now then ever, the shadow which hangs over all parents with a handicapped adult-child living at home is hanging heavier than ever in our home.

Thursday, August 10 2000

Life goes on...

We have been waiting for the approval from our insurance company to return to The University of Alabama for a consultation for weeks now. Since UAB is out of network a special referral has to be obtained. We are grateful to Health Partners for their compassion. This is for one visit...we will definitely state our case once again next Wednesday at 10:00 a.m.

Last year, I was told I no longer would be a candidate for a lung transplant over the phone! (due to my breast cancer.) How does it happen that doctors, who presumably set out their careers because they see themselves as healers, become so frequently insensitive to other people's pain?

What I did do is demand to be told in person and we were told to come in and one of the staff doctors would talk with us. There are many doctors on the "Team" and this one particular doctor happens to be nortorious for his lack of bedside manner. His words seemed ice cold and sent cold shivers down my spine. I would have walked away but I wanted to know if their were any other options available to me. And we were told no! I still shudder when I recall last years death sentence given to me.

For as long as I live, I shall never be able to forget that visit nor that doctor in late summer of 1999.

Good Night.

Saturday, August 12 2000

Finding our true selves...

Every morning when Teddie wheels me down the hall into our kitchen, he starts his day by popping a "wheelie" with me in it! Mine begins with an increase in my oxygen to get over his entertainment. While he puts on the coffee and calls for Lee to get up, I'm logging on to the PH Message Board and then go straight to visit my friends in their Diaries.

The reason for this is simple: Is it really paradoxical that when we are distressed we turn to the friends who know what distress can be like? We don't quite know why, but there doesn't seem much point in going for comfort and sympathy, the deep down, understanding kind, to those "other" friends whose paths have always been smooth. And despite our own situations, shared grief is half the sorrow, but when we share our own lives we are giving a part of ourselves to everyone.

P.S. Resolve to be yourself and know, that he who finds himself, loses his misery.

Good night my courageous friends.

Tuesday, August 15 2000

RISKS...

To laugh is to risk appearing the fool. To weep is to risk appearing sentimental. To reach out for another is to risk involvement. To expose feelings is to risk exposing your true self. To place your ideas, your dreams, before a crowd is to risk their loss. To love is to risk not being loved in return. To live is to risk dying. To hope is to risk despair. To try is to risk failure.

But risks must be taken because the greatest hazard in life is to risk nothing! Those who risk nothing do nothing, have nothing, and are nothing. They may avoid suffering and sorrow, but they cannot learn, feel, change, grow, love, live. Chained by their attitudes, they are slaves; they have forfeited their freedom. Only a person who risks is free.

P.S. Risks must be taken to truly live.

Thursday, August 17 2000

Yesterday's visit...

We are going to take the doctor's suggestion and have another right heart catheterization at St. Vincent Hospital. The pulmonary artery only showed mild pressure last year.

P.S. Teddie, when our world comes crashing down around us, you are always there to hold me.

Saturday, August 19 2000

Empty handed...

I will try to describe how I felt when we left the clinic Wednesday: Take your hand and make a fist and squeeze it. Keep squeezing and squeezing your hand tighter and tighter until your knuckles become white and it begins to hurt...that's what I call "hanging on." Then very slowly open your hand. Your hand may feel better but when you look inside you find your hand empty with nothing to hold on to...that's what I call "letting go."

P.S. Don't worry diary, I have no intentions of letting go no matter how much it hurts.

Saturday, August 26 2000

The Flying "V"

This Fall, when you see geese heading down south for the winter flying along in V formation, you might consider what science has discovered as to why they fly that way.

As each bird flaps it's wings, it creates an uplift for the bird immediately following. By flying in V formation, the whole flock has at least 71% greater flying range than if each bird flew on it's own.

People who share a common direction and sense of common purpose can get where they are going more quickly and easily because they are traveling on the thrust of one another.

When a goose flies out of formation, it suddenly feels that drag and resistance of trying to go it alone and quickly gets back into formation to take advantage of the lifting power of the bird in front. It is harder and more difficult to do something alone than together.

When the lead goose gets tired, it rotates back into the formation, and another goose flies point at the head. It is sensible to take turns doing demanding things and sharing the burden. Shared leadership and inter-dependence give us each a chance to lead as well as opportunities to rest.

The geese in formation honk from behind to encourage those up front to keep up their speed. What do we say when we honk from behind? We need to make sure our honking is encouraging and not discouraging.

Finally, and this is important, when a goose gets sick or wounded and falls out of formation, two other geese will fall out with that goose and follow it down to lend help and protection. They stay with the fallen goose until it is able to fly or it dies, and only then do they launch out on their own, or with another formation to catch up with their flock.

If we have the sense of a goose, we will stand by our friends and each other in difficult times as well as in good. Don't you think sharing and caring and supporting one another is what life is all about?

Thursday, August 31 2000

True confession...

Since I have so much time on my hands, my mind wanders everywhere. It's a safe place especially when I bring up my childhood. Raised with three brothers I learned to hold my own...Tomboy? You better believe it. Neighborhood Dads couldn't stand me 'cause I could whip their sons. I over heard my mother talking over the fence to a friend, "Do you ever see Amy Jo growing out of this?"

During one of my daily visits to my childhood backyard, I remembered something about marbles. All of us kids had our own marbles in separate coffee cans. We didn't trust each other so we had our own hiding place. This was a game we challenged each other and the neighberhood kids. This was not just a game, we took it seriously.

One of my brothers had the "cat eye" the most cherished marble ever owned by a shooter and one morning he discovered it gone....Yesterday I e-mailed him and let him know I was the one who took his prized marble.

P.S. You know what diary? I think Frank knew it all along. Oh those childhood memories, "gotta love them...."

Wednesday, September 6 2000

Affirming my goals...

I've been reluctant to write and say that Dr. Bourge at the University not Saint Vincent Hosptial will review my last year's right heart cath film, (this is the ph specialist I've been trying so desperately to see for months) mainly because its been a defeated battle to even obtain an appointment until now. We know he is a busy man and happens to treat people all over the world with heart aliments but I need him too...

When I feel that I am defeated and have lost confidence in my ability to win, I sit down, take a piece of paper and make a list, not of the factors that are against me, but of those that are for me. If anybody thinks constantly of the forces that seem to be against him or her, that person will build them up into a power far beyond that which is justified. They will assume a formidable strength which they do not actually possess.

But if, on the contrary, I mentally visualize and affirm and reaffirm my goals and keep my thoughts on them, I will rise out of any difficulty regardless of what it may be. I believe in my inner powers to reassert themselves and, with the help of God, whatever you concieve God to be; the appointment I'm waiting for will surely come to pass...just as the universe is unfolding...just as the sun rises and sets, I believe that as I give to the world, so the world will give to me. Be honest with yourself, we all have a right to be here.

P.S. Diary, as a precaution, I'll also keep my fingers crossed.

Friday, September 8 2000

Count Your Blessings...

Do you remember diary when so much was happening all at the same time last year in 1999? I was evaluated for a lung transplant...rejected because breast cancer was found...couldnot have radiation...wouldnot agree on having surgery until after our planned mini vacation...(we needed this time...) Teddie's retirement party (where he gave 30 years of his life to Jefferson County) planned for him on the same day I was to be admitted into the hospital...and when Teddie refused to let me cancel... we celebrated his 52 birthday in ICU after my surgery.

Teddie has another job now and it's full-time. Not only is he chief,cook and dishwasher but everything in between. He also handles the many "man things" for our Lee. Lee is a special adult-child. Teddie shaves and showers him and helps dress him. When it comes time to divide out the medicine for Lee or draw up his insulin, Teddie's there. Lee has become more dependent on him now and much closer. Teddie is a blessing I count in our lives.

How often do you stop to count your blessings? In your ambitious quest to better your life, be careful that you don't overlook the wealth that you already have. Wealth? Yes, wealth that is very real and very accessible to you. And the process starts with counting your blessings. Taking stock of the things you have, your family, the things you know, the people in your life, your spirituality, your sense of humor. The list of possibilities is endless, and these things all have value beyond anything you can imagine.

Diary, I challenge you to take a good hard look at yourself and then count your blessings. Think of as many of them as you can. Think of the beauty and richness of your life. These things don't require money or power. They all spring from your attitude,the way you react to situations, the way you value life itself.

Right now, within yourself, you have the ability to do anything you want with your life. You have complete control of your behavior, your actions. Look deep inside and tap into the wealth that lies hidden within you. If you are lucky, you will still be counting your blessings as I am.

Good Night.

Thursday, September 14 2000

Bit by bit...

My hour will shine on October 10th with my appointment at UAB with PH specialist, Dr. Robert Bourge. I wonder how many people give up just when success is almost within reach? We persevere day after day, and just when we're about to make it, decide we can't take any more. I came close to doing just that...

I looked around and there were so many brave people who have simply learned the value of staying in the game until it is won and those who never make it are the ones who quit too soon. I learned commitment means doing whatever it takes. Whatever it takes...not whatever is most comfortable. I didn't want to be the one that never made it because I quit too soon.

Remember when things are darkest, and the storm clouds are gathering around, stick with it because you will know when you're almost there. The path may be steep, but that's no reason to turn back. You've made it this far. Keep going a little longer and you'll see the sunrise on a beautiful "new day."

P.S. This is for you my diar of art. Every moment makes a contribution, every little detail plays a part. Having just the vision's no solution, everything depends on execution, putting it together, that's what counts."----(Stephen Sondheim, from Sunday In The Park With George)

Thursday, September 21 2000

Be who you are...

Last weekend I had what was diagnosed vertigo. It came on rather sudden and it scared me terribly. I was very lucky to be safe sitting on the bed when the room began to spin around and around. A medicine called meclizine (motion sickness tablets) worked for me. I feel much better now and what remains is my brain fog.

I talked with my brother this morning about our mother. We discussed what many families have to do sooner or later with their elderly parents. Mom (83) has out grown the assisted living home and needs to be placed in a nursing home very soon. How long have we played the parent and child role? Where have you gone Mom? We miss you...

Even on the most difficult days there is hope. The worst that could possibly happen cannot even come close to the good that already is. The whole world could crumble around you and still there would be the very real presence of joy and fulfillment in your life. The best things you have, you cannot ever lose. The most important things can never be taken from you no matter what tragedy may befall you.

And gathering this lies the strength to attempt anything. You truly cannot fail, so you might as well succeed in a grand fashion. Yes, you will stumble and there will be pain, but it can never equal the joy of what you're capable of. No one may be there to catch you when you fall, but the minute you hit bottom there will be endless ways to start climbing again.

I have more questions diary. Who am I? Am I enough a person? I do know there's no need to waste the little bit of energy I have, in trying to recapture my past and my other physical body. That would be trying to be someone else. Wishing or pretending you're someone that you're not, robs precious time from being the best you can be now. To be your best and to be honest, be yourself. No one sees the world, in quite the same way as you. No one cares, or loves, or gives, like you. You have something very special to offer. There are things you were meant to do.

I am the same person who holds inside her courage that wants to live. Sure there are problems, of course there will be setbacks, but I won't be doing them alone and they won't stop me from moving ahead. The way I see it, the past is behind me and I will not allow it to hold me back or steal away from me my spirit or my will to live. Since the days are ahead of me, I will go confidently forward knowing that even the very worst days will be filled with meaning and purpose.

I, Amy Jo Chambers, happens to have a whole "new" life worth of living to do...

P.S. Don't forget to be the best you can be.

Sunday, October 1 2000

Getting out of bed...

Oh Amy, why did you get out of bed this morning? Why do you get out of bed any morning? Is it even worth it? What are the reasons? What is it that motivates you? You've gotten good at going through the routine, but perhaps you've lost touch with the reasons why you're doing it in the first place. Where does your strength come from day after day? How are you holding on to your positive thinking? Stop for a moment and think about why. It would be so easy to stay in bed with this awful muscle and joint pain that won't go away and continues to rob you of needed sleep. Why not just give up? Why not just say enough is enough already! Then you switch gears and you think about all those you love, your family, your friends and how important they are to your life and future. Stop and think about and question why their in your life in the first place.

Then you hear this little voice inside of you telling you the reason why people come into your life and you know right away that they were meant to be there,to serve some sort of purpose, teach you a lesson,or to help you figure out who you are or who you want to become. You never know who these people may be (possibly a member of the family, your neighbor,long lost friend,or even a complete stranger), but when you lock eyes with them, you know at that very moment they will affect your life in some profound way. And sometimes things happen to you that may seem horrible, painful, and unfair at first, but in reflection you find that without overcoming those obstacles you would have never realized your potential, strength, willpower, or heart.

Everything happens for a reason. Nothing happens by chance or by means of good luck. Illness, injury, love, lost moments of true greatness, and sheer stupidity all occur to test the limits of your soul. Without these small tests, whatever they may be,life would be like a smoothly paved, straight, flat road to nowhere. It would be safe and comfortable, but dull and utterly pointless. The people you meet who affect your life, and the success and downfalls you experience, help to create who you are and who you become. Even the bad experiences can be learned from. In fact, they are probably the most deeply moving and important ones of all.

If someone hurts you, betrays you, or breaks your heart, forgive them, for they have helped you learn about trust and the importance of being cautious to when you open your heart. If someone loves you, love them back unconditionally, not only because they love you, because in a way,they are teaching you to love and how to open your heart and eyes to things. I will be forever grateful to Teddie for showing me the true meaning of love. I consider my husband my mentor and we try to make every day count.

Try to appreciate every moment and take from those moments everything that you possibly can for you may never be able to experience it again. Talk to people that you have never talked to before, and actually listen for if you don't believe in yourself, it will be hard for others to believe in you. You can make of your life anything you wish. Getting up each morning gives you the opportunity to learn something new about yourself. Add it to your list in life each and every day you live... And make your day count when you get up in the morning.

P.S. The way I see it, if I have to get up in the morning, shouldn't you?

Monday, October 16 2000

Tired...?

No matter what you do today Amy, you'll be tired when it is all over. Teddie washed my hair this morning and I was tired. Before lunch I had my bath and I was tired. I have learned some time ago I can be tired after a day of effective effort, or I can be tired after a day of getting nowhere. The choice was mine. I decided if I was going to be tired anyway, it made sense to get something out of it. Then, along with being tired, I'd be satisfied with my accomplishment.

So I ask you diary this question. how would you rather feel---tired and frustrated, or tired and satisfied? It all depends on what you do right now, with this day that's waiting to be filled.

P.S. After I take a rest, I'll tell you who I'm going to challenge tomorrow morning...

Monday, October 16 2000

Right Heart Cath w-exercise...

Tomorrow morning I will challenge the "PH Beast." And the worst thing I can do when faced with this challenge is to run away from it. Because "it" will come after me, and the "Beast" will gain even more strength. If you think this is bad now diary, just wait until it has grown bigger and stronger. I regret that I did not get the chance to face "it" sooner. Going forward through the obstacles may indeed be more difficult now. Yet it is a far better path than going backwards in retreat. My strategy is to awake this "Beast" and let him show his ugly face,confront him as quickly as I can. I'll make far more progress this way. Then I can work my way through the challenges that stand between me and my goals. Then I can focus on gratitude, and the many good things that will come out of this. I hope to direct my energy and give my attention to a side of life I have not forgotten. Expect the best Amy, and you'll make it happen...

Good Night

Wednesday, October 18 2000

diagnosed with PH...

Yesterday morning I had my right-heart catheterization in the neck (fully awake) and my doctor placed a thin, catheter in the vein of my neck and then threaded the catheter into the right ventricle and pulmonary artery. The most important in terms of PPH is the ability of the doctor to get a precise measure of the blood pressure in the right side of the heart and the pulmonary artery with this procedure. The other two ways to get this measure is through an arm or leg vein. Also during catheterization, the doctor can evaluate the amount of blood pumped out of the right side of the heart with heartbeat.

Hypertension is the medical term for an abnormally high blood pressure. Normal mean pulmonary-artery pressure is approximately 14mmHg at rest. In the PPH patient, the mean blood pressure in the pulmonary artery is greater than 25 mmHg at rest and my mean blood pressure was 49 mmHg at rest. During exercise, I had a IV bag (no needle) placed in each hand and I was told to stretch my arms out and bring them back to my sides and repeat this until I was told to stop. The pressure in the PA during exercise is 30mmHg in the PPH patient and my pressure during my exercise was 57mmHg.

I ask you my diary, if I practice all the things I've written to you in these last six months, will you hold on to my courage? I know I'm going to need you down the road.

P.S. The "BEAST" lost the battle and I'm going to win this war.

Thursday, October 19 2000

Special Friendship...

People come into our life for a reason, a season, or a lifetime. When you figure out which it is, you know exactly what to do. When someone is in your life for a reason, it is usually to meet a need you have expressed outwardly or inwardly. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally, or spiritually. They may seem like a godsend, and they truly are. They are there for the reason you need them to be. Then, without any wrongdoing on your part... or at an inconvenience time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they just walk away. They even sometimes act up or out and force you to take a stand. What we must realize is that our need has been met, our desires fulfilled; their work is finished. The prayer you sent up has been answered and it is now time to move on.

When people come into our life for a season, it is because your turn has come to share, grow, or learn. They may bring you an experience of peace or make you laugh. They may even teach you something you have never known, or possibly never done before. They will usually give you an unbelievable amount of joy. Believe it always! It is real! Oh but for a season.

Lifetime relationships teach you lifetime lessons; those things you must build upon in order to have a solid emotional foundation. Your only job is to accept the lesson, love the person and people any way; and put what you have learned to use in all other relationships and in other areas of your life. It has been said that love is blind but friendship is clairvoyant. Thank you for being a part of my life...Sharren Yamron.

P.S. Question for you diary: Who said, "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle? (Albert Einstein)

Good night Sher.

Saturday, October 21 2000

Beginning of a "new" birthday...

On this Saturday morning I called my mother and thanked her for today. She said, "Well dear, I thank you for today." I said, "Mom, do you remember what today is?" "Yes" she said, "I believe it's Thursday." I then thanked her for giving me life fifty-six years ago today on October twenty-first and I ended with, "I love you mom, enjoy your Thursday, I'll call tomorrow."

From the minute we are born, our aging process begins. Aging is time dependent; as we grow older, we age. Unless some disease gets us first, we will continue to age gracefully. A good model might be Vannevar Bush, a scientist active until his death at 84, who said:

We all know the troubles of old age. The bones creak; the eyes get dim, one forgets names. The joy of the battle is gone, for it is not proper to enter contest with an old man. But there is something to be said on the other side.

It is pleasant to rise in the morning, look out at the snow, and remark, "I'm not going to go to work today." It is a privilege to sit in the shade and watch the young men sweat out in the sun. One can find youths who genuinely like to sit and listen to old men's tales. The joys of youthful adventure are no longer than their recollection. The beauty of nature has lost none of its charm; the beauty of women none of its benediction. There is, after all,a possibility of growing old gracefully, and with content in one's heart.

P.S. Mom, is eighty-three and aging gracefully.

Saturday, October 21 2000

Surprise-surprise-surprise...

Well, what a surprise wouldn't you say diary? A wonderful day with my family made my birthday complete. Kay brought over dinner she prepared and the chocolate cake Teddie baked was simply delicious. My Teddie is one-in-a-million. I've received some beautiful cards and well wishes on the ph message board. These are priceless gifts to me. My birthday card from Kay touched my heart. She always takes pain staking time when she selects all her cards. I will cherish this one as much as all her earlier ones. I have them stored in my cedar chest. Do you keep all of your birthday cards like I do?

P.S. Cherished moments...I will sleep like a baby.

Saturday, October 28 2000

Well diary, I've stared at this page long enough. I have plenty to say and I know when I read it back to myself, reality will set in. To be honest with you...I'm still trying to swallow what was told to us at UAB by the ph doctor. My treatment for now will be a drug called Norvasc. It's a calcium channel blocker. As the weeks go I will be told to increase until I reach what I feel improvement. It works well in 25% of ph patients. Perhaps this will become my magic bullet?

Please don't give up on me diary, I'm in focus! I will continue to dance as if no one were watching, sing as if no one were listening, and live every day as if it were my last.

P.S. My plans have not changed. I will run in the park barefoot one day.

Good Night

Tuesday, October 31 2000

IF...

Many years ago Parade Magazine had a lovely interview with Rose Kennedy. This woman has seen so much tragedy in her life and displayed more courage than anyone I've ever known in or out of the public's eye. I've been thinking about her lately. This is one of Mrs.Kennedy's favorite poems written by Rudyard Kipling. I read it quite often and it helps me...

If you can keep your head when all about you Are losing theirs and blaming it on you; If you can trust yourself when all men doubt you, But make allowance for their doubting too; If you can wait and not be tired by waiting, Or, being lied about, don't deal in lies, Or, being hated, don't give way to hating, And yet don't look too good, nor talk too wise;

If you can dream - and not make dreams your master; If you can think - and not make thoughts your aim; If you can meet with triumph and disaster And treat those two imposters just the same; If you can bear to hear the truth you've spoken Twisted by knaves to make a trap for fools, Or watch the things you gave your life to broken, And stoop and build 'em up with wornout tools;

If you can make one heap of all your winnings And risk it on one turn of pitch-and-toss, And lose, and start again at your beginnings And never breath a word about your loss; If you can force your heart and nerve and sinew To serve your turn long after they are gone, And so hold on when there is nothing in you Except the Will which says to them: "Hold on!"

If you can talk with crowds and keep your virtue, Or walk with kings - nor lose the common touch; If neither foes nor loving friends can hurt you; If all men count with you, but none too much; If you can fill the unforgiving minute With sixty seconds' worth of distance run - Yours is the Earth and everything that's in it, And - which is more - you'll be a Man my son!

P.S. Always remember, after any storm...sunshine will appear.

Good night

Thursday, November 2 2000

Life is difficult...

I'm sitting here in our kitchen and listening to my Teddie sing as he cleans the table after our dinner. I enjoy these evenings so much because I know he is relaxed and happy. Sometimes I join in on the chorus. We make life as pleasant as we possibly can. Life is difficult enough as it is so why waste so much time trying to avoid the nicks and bumps when you could be spending your energy making life good with what you have?

Here's a little secret and a paradox. Once you truly accept the fact that life is difficult, it becomes vastly easier. When you stop fighting with life and accept it for what it is...the "Ultimate Challenge"...that acceptance gives you the perspective you need to overcome any obstacle. When you understand that life is a challenge, then you start to seek challenges, and those challenges will build and shape your life with purpose.

What I'm trying to say to you diary is, welcome and celebrate life in all its ups and downs. Relish the cold, dark days just as eagerly as the bright, warm ones. Find out as much value in our life's defeats and mistakes as in the victories and successes.

Turning obstacles into achievements is the very essence of life. Isn't life precious?

Good night

Thursday, November 9 2000

TIME...

The next time Amy you're tempted to blame, condemn, or act out of anger, please ask yourself...what will it accomplish? The next time you start to worry or fret, or feel sorry for yourself, ask yourself--what good will it do? If you focus on anger, you'll have plenty of reason for anger. When you focus on worry, you will have much to worry about.

How many things do you fail to start because you don't think you have enough time to finish them? One of the most insidious ways to waste time is to think that you don't have enough time. Is that crazy or what? Think about it. Alright diary, let's get you in on this! You're pressed for time right? And you're running short of time. So how do you spend the time you have? I'll tell you what you do! You fritter, yes fritter it away, thinking that there's not enough time to do what you really need to do.

Just get started on it for heavens sake. If you don't finish, it will wait. At least you've started. At least you've made some effective use of your time. Better to start and not finish than not to start at all. If you don't have enough time, that's all the more reason to get started now. So use the time you have. Wishing for more time is simply a waste of time. Get busy. Get started now. You may not finish today, but so what? You're moving forward, and that's the best direction to go.

P.S. Short on time? We all are.

Friday, November 10 2000

Why Do Women Cry?

"Why are you crying?",a young boy asked his Mom. "Because I'm a woman",she told him. "I don't understand",he said. His Mom just hugged him and said, "and you never will, but that's okay"....Later the little boy asked his father, "Why does Mom seem to cry for no reason?" "All women cry for no reason," was all his Dad could say....The little boy grew-up and became a man, still wondering why women cry. Finally he put in a call to God and when God got back to him, he asked, "God, why do women cry so easily?" God answered, "When I made woman, I decided she had to be special:

I made her shoulders strong enough to carry the weight of the world, yet, made her arms gentle enough to give comfort. I gave her the inner strength to endure childbirth and the rejection that many times will come even from her own children. I gave her a hardness that allows her to keep going and to take care of her family and friends, even when everyone else gives up, through sickness and fatigue, without complaining. I gave her the sensitivity to love her children under any and all circumstances. Even when her child has hurt her badly. She has the very special power to make a child's boo-boo feel better and to calm a teenager's anxieties and fears. I gave her strength to care for her husband, despite faults and I fashioned her from his rib to protect his heart. I gave her wisdom to know that a good husband never hurts his wife, but sometimes tests her strengths and her resolve to stand beside him unfalteringly.

For all of this hard work, I also gave her a tear to shed. It is hers to use whenever needed and it is her only weakness. When you see her cry, tell her how much you love her, and all she does for everyone, and even though she may still cry, you will have made her heart feel good. She is special!"

P.S. Do you know what diary? After reading this, my Teddie shed a tear or two.

Sunday, November 12 2000

It Comes Back...

Too often we give into the temptation to push the fast forward button, to skip ahead to the next page before we've read the one we're on. As if jumping ahead will somehow make things better, or easier. For me, just living through this illness daily, I see beauty and the joy of life come in living it through. Skipping ahead or jumping back will serve only to cheat me out of the "now". It's not at all difficult to do. All you have to do is live life as it comes to you. Really live, each moment at a time. I've said this before,