Introduction

I have read the PHcentral diaries for over a year, but I didn't have the time or the nerve to start my own diary. To me, having a diary on-line was/is somewhat frightening because my thoughts are available to anyone in the world with computer access. Until a month ago, I was a high school teacher; however, PH ended my 33-year teaching career. I just did not have the stamina necessary to meet the demands of my job anymore. My energy level was at an all-time low. Now, I can rest when necessary and exercise when I can. I feel better.I was afraid that my days would drag and that I would be bored. That has not been the case. I have re-discovered crafting, I can go for lengthy walks if my PH is cooperative, I can feel the sun on my face, and I can read. I am enjoying my days. Of course, I miss contact with the students and the other staff members, but I do not miss the political hassles so common in education today. With that said, I am now ready to share my thoughts with the world.

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Unusual Sighting

On my morning walk I spotted a male ring-necked pheasant that was beautiful and quite proud of himself. When I was a child, these birds were frequently seen strutting along the ditch banks and in the farmyard. However, as civilization grew and people began destroying the habitat of the birds, they were seen less and less. I think the bird I saw this morning was recently released by the Game & Fish for the upcoming hunting season, as he did not fly when a dog approached him. He will have to learn some survival skills or he will not make it through the month. Isn't that what life is all about - learning new survival skills? PH has definitely forced me to adapt to and accept the changes in my life. Every morning I have to judge how much I will be able to do that day.

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Pill Boxes

I didn't think it would ever happen to me: I have a cabinet that is filled with pill bottles in various stages of use. I keep the half full bottles of medication (those the doctor asked me to discontinue using) just in case he wants me to begin using that medication again. I hate to discard the pills because I have so much money tied up in the drugs. Was there really a time when I didn't have to take any medication? A time when I actually squandered my money on luxuries and not drugs? That is too many years in the past for my PH-altered brain to even consider.

It all began innocently with one medication a day, so the bottle stayed on the counter near the coffee pot. Gradually, a second drug was added, and for convenience, I purchased a tiny, weekly pillbox. Quickly, that box became too small as more and more drugs were added to my treatment plan, so a medium-sized box replaced the tiny one.

Two pillboxes took up residence near the coffee pot. The blue box was filled with the drugs to be taken in the morning, and the yellow box was for pills taken with my evening meal. In the bathroom, a hexagon-shaped box contained pills to be taken at bedtime.

Yesterday, I found myself in the pharmacy shopping for a different pillbox. I was looking for one with multiple compartments for each day, and I bought the medium version. Murphy's Law, no doubt, will take effect soon and insist that I purchase an even larger one.

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Notes on the Floor

A true sign of how I am feeling are the number of notes found on the floor near the kitchen or the garage door. If my memory begins to slip on a regular basis due to oxygen de-saturations, then I write a quick reminder to myself and put it on the floor where I know that I will see it.Of course, I keep a calendar in the bathroom with notes and reminders on it, but sometimes I need a more obvious nudge to my memory; thus, the notes. Do they work? Well, yes, but they can be a source of embarrassment when unexpected friends stop by for a visit. Usually, I scoop the notes up on my way to answer the door. I just have to remember to put them back on the floor when the friend leaves.Today is a good day. I have only two notes on the floor.

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Fears

My greatest fear right now is that my disability claim will not be approved/accepted by my disability insurance company. I've had the private policy for over 10 years and didn't even think about using it until a month ago.

I am on medical leave (FMLA) from my job. The FMLA 12-week leave ends before the 90-day waiting period for my disability policy. I sincerely pray that I will have the decision from my insurance company before the 12-week period has lapsed because after that point, I will no longer have a job, no income, and no retirement until February 2007.

I could probably return to my classroom and make it through the remaining school year with a lot of accomodations, but part of the reason I am on medical leave is emotional. I am no longer emotionally able to deal with rude and unruly students. I have no desire to grade massive amounts of essays that I spent more time reading and grading than my students spent writing. I am angry that I must give up weeks and weeks of instructional time to State and Federally mandated tests that students blow off and for which they are not held accountable. Returning to a District that treats its staff like machines and keeps adding more and more days to the calendar and piling more responsibilities on its staff without taking anything off of the plate is depressing. I simply cannot face the prospect of going back even though I love teaching and have taught for 33 years. Oh, how I pray that my claim is approved.

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California Guitar Trio - Wow, what a group!

I attended a local Community Concert Association presentation last night. I almost begged off because I was tired, but I decided to go at the last minute. I am so glad that I did because the performers were excellent and the music just flowed over me and made me feel wonderful. The group (California Guitar Trio) of three men from three completely different backgrounds was phenomenal. They played classic music, a bit of rock, some blues, and some jazz. It was awesome, however, to hear Beethoven and Bach played on three acoustic guitars. If you EVER have an opportunity to hear these three men (Paul Richards, Bert Lams, Hideyo Moriya) as the California Guitar Trio, don't let it pass. I was mesmerized from the first note.

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Something from Nothing

I credit my mother for giving me the gene that refuses to throw anything away that can be used, no matter how small it is. She grew up during the Depression and raised a family during World War II, so her motivation was survival. However, Mom created such wonderful things out of practically nothing - delicious meals, cozy quilts, and durable rugs. Currently, I am making rugs on the frame I inherited from Mom. It is a large contraption made from nails, rods, and wood. I remember how Mom cut my brother's Levis into strips and sewed them together to make the rug's warp and used our family's old clothing for the weave. Our cat would sit at Mom's feet and play with the fluttering, colorful strips as she deftly wove the fabric through the denim strips. Now, as I sit in front of the frame and work on my own rugs, I reflect on those memories and my mother 's strength.

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Garden Gold

A good friend just dropped by to visit and to present me with a large bag of carrots that he dug from his garden. Some are huge and perfect for stews and soups. So after my friend left, I began to gather the ingredients for my favorite soup: Friendship Soup. Years ago another friend gave me a quart jar with most of the ingredients to this soup arranged in layers. This recipe has since become a favorite of mine, and I do supplement it with things I have in the refrigerator (like today's garden gold). It makes a very large pot of soup, and it freezes well. When I make a batch, I freeze individual servings in Gladware. It definitely comes in handy on those days when I don't feel like cooking.


I don't know what this diary will show this recipe in legible format, but I'd like to share this delicious soup with you.


Friendship Soup

This soup can be layered in a quart jar for a gift. Make sure to add a tag that gives the additional ingredients and directions for making soup. The prepared soup makes about 5 quarts, enough to enjoy and to freeze.


1/2 c. dry split peas
1/3 c. beef bouillon granules
1/4 c. pearl barley
1/2 c. dry lintels
1/4 c. dried, minced onion
2 tsp. Italian seasoning
1/2 c. uncooked, long-grain rice
1/2 c. alphabet or small macaroni


If this is to be a gift, layer all of the ingredients (except the macaroni) in a quart jar. Place the macaroni in a small packet on the top of the jar. Place a decorative lid on the jar, attach the cooking directions and give as a gift.


Cooking directions:
Brown 1 lb. of hamburger and drain. Add 3 qts. of water, 1 large can of diced tomatoes (undrained), and all of the ingredients in the jar (except for the macaroni). Bring to a boil, cover, and simmer for 45 minutes. Add reserved macaroni after 45 minutes and simmer an additional 15 minutes or until macaroni, lintels, and split peas are tender.

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Smooth Rolling

Yesterday my oxygen was delivered. I put out the temporary ramps a friend constructed to make entry easier for Dale (my deliveryman). I painted them a bright florescent orange so they can be easily seen, and yesterday they practically glowed against the snow piled in the yard.

I was the last of Dale's morning stops, and he was here close to noon. My pot of Friendship Soup was just ready to serve, and the house smelled wonderful. Dale commented that the smell made him hungry. He was surprised and delighted when I presented him with the jar of soup to take for his lunch or supper.

Dale's cargo makes my life easier. Without my trusty Helios, my life would be pretty limited and very dull. I remember how self-conscious I was when I first started oxygen therapy: I thought that everyone was looking at me. Now, I really don't care what anyone thinks because I am able to get out and do more. Once I got over that psychological barrier it has been smooth rolling for me.

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Matter of Perspective

Numbers are an integral part of everyone's life, but probably more so for the PH patient. The distance an individual can walk in 6 minutes determines treatment, progress or lack of progress. The pressure within the pulmonary artery can bring sighs of relief, celebration, or depression.For over a month my primary care doctor and I have been focused on my systemic blood pressure and tinkering with medication ever so carefully. Let's try 5/10mg of this drug; okay, that didn't work let's try 5/20mg. The numbers still refused to budge downward, even a bit. Yesterday, I was given the directive to try 10/20mg. Today, I am encouraged because every so slightly my blood pressure numbers are beginning to decrease. Even though they are still high, my progress is a matter of perspective.

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Brushes and Hair Dryers

Brushes and hair dryers should be listed on the algorithm for diagnosing PH. Difficulty using these two tools were some of my first hints that something was not right with my health. Out of the blue, I struggled to hold the implements over my head for any length of time. I had to sit on the lowered toilet seat to even dry my hair. How do you explain to your primary care doctor that you hair dryer is making you light-headed and nauseous? My remedy was to cut my hair really short and let it air dry. That kept my PH symptoms at bay until I experienced them while putting on panty hose and tying my shoes.

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Newfound Friends

I haven't always loved to read. It was a chore that I dreaded in elementary school. My teachers used "Reading Robins" with each student reading one paragraph. I remember cringing at my desk, counting ahead to see which paragraph would be mine. I then read that paragraph to myself over and over again, making sure I knew how to pronounce each word, totally missing what my classmates were reading.

After experiencing those anxieties myself, I vowed that I would NEVER put a child in a situation like that. When oral reading was necessary in my classroom, I always asked for volunteers or read the material myself. Reading should be a pleasure NOT a chore, a passion NOT a dread.

I remember distinctly when I began to love to read. I was 12 years old and home alone when a terrible thunderstorm hit. To distract myself from the storm, I began reading a book, given me for my birthday -- Rebecca of Sunnybrook Farm. I was hooked from that moment. I still have that book with its silly gray-striped cover. I don't remember a thing about Rebecca and her adventures other than the book created a spark that has since turned into a blaze.

These days I have more time to devote to reading. In the past four weeks I have devoured five books and have started another one. I have discovered authors whose work I enjoy: Patricia MacDonald, Elizabeth Lowell, Alice Hoffman, Robin Pilcher.

No matter how much I enjoy these newfound authors, some of my favorite writers include: Rosamunde Pilcher (her book, Shell Seekers, is so true to life), Herman Wouk (War and Remembrance is fabulous), Tom Clancy, Ken Follett, Robert Ludlum, Tami Hoag, J.R.R. Tolkien, Saki.

Now that I have more time to read for pleasure, I can reread some of my favorites or just browse the library shelves and allow chance to lead me to some newfound friends who will gladly distract me from my worries and complaints.

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Expiration Date

It's not there, not on the bottom of my feet, not behind my knees, not in my hair. It just isn't there! Despite how I feel some days, I do not have an expiration date anywhere on my body. You know, that handy "Best Used By" date stamped on foods, drugs, and even coupons. Early in the diagnosis process, I felt like my days were limited, but in reality, they were limited even before PH because I begin dying the day I was born. A crudely embroidered wall hanging hangs in my kitchen. It says, "Enjoy Life! This isn't a dress rehearsal." Truer words have never been spoken, and I strive to remind myself that every day is a gift that I chose to open and use. I cannot save it and keep it safe because when the sun goes down that gift disappears only to reappear (God willing) when the sun rises again.I am not going to waste anymore time looking for my expiration date. I am going to enjoy this day for the gift it is.

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Top of the List

While watching one of my favorite television shows, Law & Order SVU, I heard a line that sent shivers up my back. One of the detectives (Elliot) was having a difficult time dealing with a situation, and his therapist told him, "You have been so busy helping others that you have no strength left to help yourself." Wow, she compressed my life into that one sentence. In my role as a teacher, I have listened to and helped countless teenagers as they struggle with life's bumps and detours. When I visit with friends, I downplay my own struggles and try to focus the conversation on their lives because, in my mind, no one wants to hear about me.I've been so busy helping others that I had no strength left to help myself. While working I was exhausted, teary, and angry. No more. I am going to put myself first during my medical leave. My name is going to the very top of the list. I am going to rest when I feel the need, I am going to be lazy and sleep in. I am going to read. When possible, I am going to exercise. No longer, am I going to feel guilty shopping during the school day. I am going to be selfish, and I am not going to feel guilty. The view is great from the top.

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Give Thanks

Even though I will have no guests and no family coming to my home, I am celebrating this Thanksgiving Day. The turkey breast is in the oven with the yams and a potato. I baked a pumpkin pie yesterday. My meal will be ready in less than an hour with plenty of "planned overs" that I can enjoy throughout the week. I do not mind eating alone. Actually, I do it nearly every day, so this day no different. What is different is that today is a holiday; thus I have an excuse to enjoy foods that I usually do not prepare. Holiday foods bring back wonderful memories. As you sit to enjoy your meal, give thanks for your many blessings and celebrate the day.

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Fingernails

I have noticed that my fingernails are predictors of my health and the fluctuation of my PH. The phenomenon is hard to explain. The week before my PH takes a turn, my nails are brittle: they split and crack and flake. They become pale and lifeless. However, when good days appear, my nails are strong with distinct white areas at the ends and seem to be longer. I have mentioned this to my PH doctor, but he has dismissed it. I haven't been able to find anything about nail health on the Internet, but my nails will continue to be an early warning system for me. Today my nails are strong, so I must have a good week coming.

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A Reminder

Sitting at my computer last night I heard a rumble that drew me outside to seek the source. From my patio, I viewed fireworks exploding and popping. My breath made little white wisps in the dark, crisp air as I watched the red, blue, yellow and white stars explode and light up the sky. It was a beautiful and unexpected display, but the explosives brought our brave soldiers to my mind. I stood on my deck and uttered a pray for those who are far from home and who are seeing explosive displays that do not signify celebrations. Thank you for their sacrifice Lord and bring them all home safely.

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Cup of Tea

It is hard to beat a good cup of tea. I often wonder where I got the love of tea since I was raised in a family that loves coffee. I do drink coffee, but given a choice, I prefer tea. Strangely, I do not care for iced tea: I want my tea to be hot - really hot. I want to be able to cradle the warm cup in my hands and allow the warmth to seep into my body. My PH doctor told me not to have more than 2 cups a day because of the caffeine and my liquid restriction. That is SO hard to do, and often I cheat and sneak in a couple more. The problems in my world are easier to swallow with a good cup of tea. Put the water on to heat and let's have a cup together.

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Lonesome Pine

My Christmas tree is in the garage, shrouded in a bag made from a sheet. It hasn't been decorated in three years. In the past it stood proudly in the front room, framed by two windows. It was covered with bead garland, bows, lights, crystal icicles, and assorted mementos from my life - a plastic horn from my childhood, a glass ornament from my mother, gifts from students and nieces and nephews, and souvenirs from many trips. It was beautiful. I used to enjoy decorating the tree and reminiscing as I unwrapped and placed each treasured ornament and decoration on the tree.

Now, I tire when I raise my arms above my head and struggle when moving heavy boxes. I could probably get the tree decorated if I took my time, but taking it down is an even bigger struggle getting everything wrapped, boxed and stored. I just don't have that kind of energy or desire.

My sister called yesterday and tried to shame me into decorating for the holidays. She suggested that I have a tree-decorating party for my friends and have them help decorate. It did sound tempting, but even that would require more than I want to do because who has party to take decorations down and put them away?

I admit, however, that her guilt-trip was a bit successful, as I did unpack the Advent wreath, nativity set, some silk flowers, and two lighted ceramic trees. I put some of my favorite ornaments on two wreaths I got at an after-Christmas sale and placed electric candles in the front windows. That's it. My decorating is finished. The tree remains covered in the garage for the fourth year.

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Changing Times

On my walks I notice that my neighborhood is growing as houses take over the vacant lots to the east. The thwing, thwing of the pneumonic hammers hum in the air. Laborers make quick work of applying the siding and the shingles. I wonder what ever happened to the solid thwack, thwack of a claw hammer. I know that the new hammers make the carpenter's job easier and faster, but to me, the construction just isn't the same.

What ever happened to craftsmanship and the satisfaction of swinging a real hammer?I am not a carpenter and don't claim to be one, but I have wielded a hammer throughout my life. I built scenery flats with my drama students. I helped my brother build panels for the calf pens on the farm. Sure, I missed the nail and few times in the beginning, but finishing the project sure did feel good.

Tonight, I went the long way around the block to pick up my mail. When I rounded the corner, I heard it - the solid thwack of a hammer. Aaaah, my soul sang at the sound. There are still individuals out there using a manual hammer. The world is safe in my neighborhood.

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Time to Rewind

The Regulator clock on the wall has chimed the hour and half hour for twenty years, but I hardly notice it anymore. When I have company, I usually stop the pendulum so the chimes don't wake them throughout the night. This morning the clock is sounding a bit odd and is losing time, but a glance at the calendar reminds me that it just needs its monthly winding.

Determining why I don't feel good on some days is not as easy. Those are the times that I have to go through a mental checklist. Did I take my medication? What is my oxygen saturation and do I need some oxygen? What is my blood pressure? On those days that I can't find an answer, I just grab a book and a cup of tea, sit down, and rewind.

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Lifesaver

I made a card that I carry with me at all times. I have one in my coat pocket, one on the refrigerator, two in the glove compartment of my car, one attached to my Helios, and several in my wallet to give to doctors/nurses. I live alone and feel this is card may be valuable if I cannot speak.

It has my name and address, and all of my doctors' names, phones and FAX numbers. The card lists all of the medications that I take and the dosage and my major health concerns. My emergency contact number (my sister's), my insurance information, and my pastor's name and number are also given.The card was formatted for a folded business card, but the paper is too hard to find, so now I just print them (double-sided) on bright colored paper and trim off the excess.

Several nurses and a couple of doctors have complimented me on the card. I give them the card for my file, and it is easy for them to transfer the information to their records. Some nurses copy the information and give the card back, but I always tell them they can keep it in my file. I will take the older card and destroy it when I get home. I update the card every time that my medication is changed.

If you want a copy of the template (a Word document), just send an e-mail request. I will get one sent to you.

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Batteries Not Required

As a young child, I remember spending hours sifting through the contents of my mother's button box, a worn, round, green tin with the picture on the lid of a clipper ship in a turbulent sea. The box was packed with hundreds of interesting buttons (all different sizes and shapes), loose rhinestones, "found" jigsaw puzzle pieces, and a salvaged zipper or two. I sorted the buttons by kind and color so many times that I can still visualize some of the buttons. I don't know what happened to the box after my mother's death, but by that time I had started my own collection. I save any stray button that I find, I clip buttons off of any clothing to be discarded, and I save the extra buttons included with new clothes. I keep my buttons in large mason jars that are lamp bases. I rarely sew anymore, so I save my buttons, not specifically to use, but to decorate.



Okay, I admit that I was an odd child, but I learned how to categorize, how to count, and how to amuse myself without any cost to my parents and without requiring batteries, truly strange concepts in the world of today's child.

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Postal Epidemic

I hate to throw usable things away, but how many self-adhesive address labels does a person use in a given year?

I receive unsolicited labels from the VFW, DAV, MADD, Komen Foundation, Habitat for Humanity, Sunshine Project, Juvenile Diabetes Research Foundation, PVA, March of Dimes, Easter Seals, USO, Guidepost, etc.. (All are worthy charities and I do support some of them) You name the organization, and I seem to be on their list to send address labels, sometimes multiple sets from a group. One group even has the wrong address. One year I saved every label, and by year's end, I had a large manila envelope crammed with them. If the labels were sturdy enough, I could make a whole new and colorful wardrobe of them. Maybe I should write a book One Thousand Uses for Free Address Labels.

This madness has become contagious: other groups and charities have joined in the campaign for my support or plot to drive me mad and give my mail carrier a weak back. Now, I get labels and notepads, gift wrap and calendars, greeting cards and lapel pins, pencils/pens and elastic bracelets, magnets and (who knows) maybe a copy of a book entitled, One Thousand Uses for Address Labels.

Hmmm, I might be onto something here. Keep an eye on your mailbox for your free copy. Of course, donations will be cheerfully accepted.

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My Good Friend, Ferne

Yesterday I went to the hospital to visit one of my oldest friends. Ferne is 90 years old and pretty sharp, despite her failing health. She is a delightful person.

I met Ferne twenty-five years ago. She was in charge of the school kitchens, which fed 200 students plus staff each day. EVERY one of her meals was lovingly prepared by her own and her helpers' hands; none of the food was pre-packaged or prepared. They even made pudding from scratch. We had fresh rolls/bread every day. It was agony to have a classroom near the kitchen. The smells that wafted down the hall had my stomach growling by 10 AM. Some of my favorites were Shepherd's Pie, Cabbage Rolls, Potato Soup and Baked Cheese Sandwiches. Oh, I could go on and on.

In addition to her delicious meals, Ferne checked on each student every day. She knew when they were experiencing difficult times before any of the staff. No one complained about the lunches at school during Ferne's tenure except to say there was not enough time to eat.

Ferne and her husband adopted five siblings whose parents relinquished custody because of neglect. The children's ages ranged from 1 - 6 years. Ferne's biological son was five at the time. Later, she and her husband took in four additional foster children. Ferne is proud that there are ten senior portraits of her children hanging on the wall of her living room. The love that this woman has shared with others is phenomenal.

I truly love Ferne, and I worry about her. She lives alone, and I am concerned that she will fall with no one around to check on her. She had a very close call this time.

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