Cutting the Thread

Several days ago, I wrote about freeing a baby robin that was tangled in the nest. Friday evening, I cut another thread, but this time, I freed myself.

That night, I attended a small gathering that honored the staff members who were leaving the school district. It included staff from the elementary, middle school and high school, the support staff, some administrators, and everyone's spouses. The weather was pleasant, so the event was held in an outside courtyard.

I dread going to parties because of the stilted conversations. Small talk is something that I do not enjoy or do well. I often stand on the fringe and listen and nod my head a lot. It is not that I don't have anything to say; it is just awkward and uncomfortable and sometimes just painful.

If you will remember, my last gathering (at Christmas) with this group was anything but enjoyable. Leaving Friday's party early was not an option since I was one of the retirees, but this time, I went to the party with no expectations, and that made the evening bearable. I heard that we needed to "have lunch" sometime this summer and "get together" for drinks - vague invitations that will never materialize because it was just part of the small talk.

The evening was just a ritual to cut the thread.

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Hole in the Sky

Six, old trees were felled in a vacant lot near my home as developers prepared the area for building sites. The titans didn't leave peaceably: the whine of the chain saws could be heard for days, but one by one, they were coaxed to the ground by ropes attached to a truck. They couldn't escape progress.

I hate to see mature trees destroyed. Trees have grace that is hard to explain. They withstand the harshest winds, coldest temperatures, and driest conditions, and they provide a cool shelter on a sweltering day. They filter harmful chemicals out of the environment. They are humble giants.

Their departure has left a huge hole in the sky. When I view the area, my mind doesn't quite acknowledge that they are gone. Hopefully, the people who build homes in the area will plant trees, but the saplings will not grow enough in my lifetime to fill the hole in the sky left by the fallen titans.

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This & That

No matter how many times I tried to write a diary entry over the past week, the words would not come. I stared at the blank screen and nothing of substance came from my attempts. My thoughts shriveled and died before I can even find the delete key.

The past week was a blur of activity that wore me out: I worked three consecutive days at the hospital auxiliary gift shop because they could not find enough people to work. The time I spent (nine hours total) netted a whooping $8.00! It hardly seems productive to me, but it got me out of the house. I was able to sit and pass the time by knitting, making four, hanging kitchen towels for a PH fundraiser that a lady in Omaha, Nebraska is planning.

I found knitting to be a great conversation starter. Several individuals came into the small shop when they saw me knitting: one was a young man about 9 years old. In our brief conversation, he told me that he knew how to knit. I was impressed, and so we had a nice chat about his projects. Over the span of three days, I had visited with knitters in a wide range of ages and expertise. I enjoyed that connection.

For some reason, just sitting in the shop was tiring. I was very tired when I finished my shift each day. Last night (sleeping 11 hours) I got some much-needed rest.

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Reunion Plans

Soon, I will be going to a family reunion. This is the first time in seven years that my entire family (20 adults and children) will spend some quality time together away from computers, Internet, and television. We cannot escape cell phones, but other diversions may cut their use to a minimum.

We have rented cottages at a Minnesota lake resort, and plans have been made for daily excursions: canoeing, fishing, boating, biking, horseback riding, walking, shopping, and even gambling. I doubt that I will partake in the physical activities, but I plan on visiting, shopping, reading, relaxing, playing board games, and sitting in the shade sipping a tall cool one.

Since I live in a dry climate, I am concerned about the July heat and humidity of the resort area, making breathing difficult. The cottages are not air-conditioned, but I am taking fans to circulate the air. I have made arrangements for liquid oxygen rather than using a concentrator that would create more heat in the cottage. I am even taking some cooling neckbands. These bands are filled with beads that swell when placed in water. When the neckband is tied around the neck, it remains cool for a couple of hours. I used to wear the band when I mowed my lawn. If it is refrigerated, it will remain cool longer. I think these precautions will make the heat and humidity tolerable.

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Revealing a Family Secret

Food has always played a big part in my family and our gatherings. Whenever my sisters came to the farm, they expected my mother to prepare her sliced cucumbers in white sauce. Our mother's dishes were not fussy, but they satisfied hired hands, grandkids, and neighbors. No one ever left her table hungry.

My niece is preparing a cookbook of family recipes to distribute at our family reunion. Everyone was asked to submit favorite recipes and write any memories associated with that dish. It was difficult to choose favorite recipes, so I sent several.

Every time Mom made drop cookies she would add raisins. My nephews did not like raisins, so they would pick them out as they ate the rest of the cookie. Mom hated the waste, so instead of eliminating the raisins from her dough, she added ground raisins. My nephews thought she had found a new recipe and eagerly ate the cookies, ground raisins and all. They often requested that she make another batch of the "good cookies." We never did tell them that the cookies contained raisins, but when they get a copy of the family cookbook, the secret will be revealed.

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Hink Pink Afternoon

This afternoon I was going through some old teaching files and stumbled across my Hink Pink notebook. I had a blast trying to solve these old brainteasers. A Hink Pink is a combination of words that rhyme each word having one syllable. In a Hinky Pinky both words have two syllables. Hinkity Pinkity words with three syllables exist, but they are rare.


Example:

Fat husband (hinky pinky) = chubby hubby

Inexpensive lamb (hink pink) = cheap sheep


Here are some to try: Hink Pink (1) and Hinky Pinky (2)


Insect secret agent (1)

Corpulent feline (1)

Sneaky insect (1)

Solitary duplicate (1)

Broader Arachnid (2)

A think splash catcher (2)

Reptile storm (2)

Trained Fire (1)

Warm Circle (1)

Pure keg (2)

Daisy energy (2)

Thinner glow (2)


How did you do? Write some of your own, it's fun

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Making the First Cut

The fabric in Civil War colors (beautiful shades of burgundy, blue, green, and tan) has been to Minnesota, Colorado (twice) and Wyoming. Piled neatly in the box (by color), they have been silently mocking me for nearly a year. I have mulled and planned and charted the quilt in my mind and on graph paper numerous ways. Time after time, I would decide on one design, change my mind, and stuff everything back into the box.

I was afraid to make the first cut, afraid of the commitment and afraid of failure. Today, after a brief call to my sister for reassurance and confidence, I took the rotary cutter, measured the fabric, and then smoothly cut the square. I have officially started the quilt.

My mental block on this project puzzles me. I have the skills and tools to do an adequate job, and no one will be "judging" the finished product because I am keeping it for myself. I may never know why I was so reluctant to begin.

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Devoted Fans

I have no idea what I would do without the swirling blades that stir the air in my home. About five years after I moved, I had ceiling fans installed in every room, except the bathrooms. They run all year long: the direction of the blades is switched with the seasons to either pull the hot air down to heat the rooms in the winter or up and cool the rooms in the summer.

When I purchased my home, a large swamp cooler was installed in the family room window. It cooled about half of the house, but I just could not stand the moisture in the air. (Now, I believe this was due to my PH.) I sold the beast and purchased a window air-conditioning unit that cools the family room and the kitchen.

My bedroom is on the west, and despite room-darkening shades and thermal drapes, the unrelenting afternoon summer sun heats the room to unbearable temperatures. The bedroom window is not suitable for any cooling units on sale. Two years ago, I found a portable air-conditioner on casters that I can vent through the window.

The house has electric baseboard heaters, so to have central air installed would be very costly because my home has no heating ducts.

Temperatures in May and June were unseasonably high, so now that summer is officially here, July and August will probably be scorchers. I am thankful for my devoted fans.

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Windshield Time

I am trying to get things organized for my family reunion trip. I have been using a guest bedroom to pile the things that I need to take with me. I also have another pile in the garage. I have no idea if it will all fit in the car, but I will give it a try. I will probably have so much weight in the car that my gas mileage will be 20 mpg instead of the 40 mpg that I usually get when I am on the open road.

I have a tendency to over pack, taking things that I think I may need and never do. This time is no different; although, I have decided to take half of the clothes I took on my trip to Denver.

Today, I went to the library and checked out several books on CD and tape. Listening to the books helps to keep me focused and makes the time go faster.

I will be leaving for Fargo, ND (about 1,500 miles) sometime next week and spend the week before the reunion with my oldest sister and her husband. They planned this year's gathering, so I will be helping her with the final arrangements.

I haven't driven this far since being diagnosed with PH and admit that I am a little apprehensive. Sis (her real name is Evelyn) will meet me in Medora, ND the first night. She suggested that we meet there for a musical performance at the Teddy Roosevelt Park. She will ride to Medora with Mary (her neighbor), Mary's mother and daughter and then ride back to Fargo with me the next day. I am delighted to have company for more than half of the distance. We will both get a lot of windshield time in two days.

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Lessons in the Kitchen

It is amazing how a casual meeting can turn into something more substantial. About two weeks ago, I asked a friend if she wanted to come over and pick some rhubarb. She said that she didn't need any but she had a friend that would like some.

When they came over to pick the rhubarb, Carol saw the rag rugs scattered throughout the house. She asked where I got them and was surprised when I said I had made them. The conversation then turned to rugs and frames and books. She called a couple of days later and asked if she could bring her daughter over to see the rugs and to see how they were made. I agreed.

Yesterday, three more generations learned how to make my mother's rugs. It was exciting to see a mother, her daughter, and a granddaughter learning a new craft. After learning the technique on the large rug frame, they picked out some scrap fabric that I had and I got them started on the small placemat frame that I agreed to loan them. I think it is really important to have something to work on immediately so your hands and your mind can connect the process. I offered to help with any difficulties that may arise, and they left excited to continue the process.

It felt good to show them how to make the rugs, but I am confident that this family will keep this craft alive for at least another generation.

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Tired and Itchy

Arrived home this evening after a long, long day of driving (13 hours). After two weeks on the road, I am looking forward to sleeping in my own bed.

Despite practically bathing in Deep Woods Off, I have mosquito bites on my fingers, my toes, and nearly every other skin surface. Those persistent pests are adept at finding the unprotected areas. My bites are quite itchy and irritating.

I haven't even dared to look at the scale and probably will not (at least for a couple of days). Let's just say I was not faithful to my new eating routine. My oldest sister planned and prepared the most delicious and tempting meals. Tomorrow, I have to get back on the plan.

Will provide more details of my trip later.

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My Family

Everyone gathered on the last night of our stay at Breezy Point Resort near Osage, MN. The youngest attendee was 5 months old, and the oldest was 72 years old. One side of the family was represented by three brothers and one sister; the other, three sisters. (I am in the blue shirt in second row from the top on the far right).

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Putt-putt

Before last Wednesday my oldest sister and I had never played putt-putt golf, so we gave it a try when some of our group decided to go play before the temperatures hit the daily high. We had a blast! She surprised the "young pups" by having five holes-in-one and by having the best overall score. The 18th hole proved to be her most spectacular with a beautiful bank off of a sideboard that sent the ball flying into the cup. It appeared like a hand came out of the cup and literally grabbed her ball.

My brother-in-law hauled a large canister of oxygen to the camp, and I used it at night and filled my Helios from that every morning. The backpack for the Helios was my companion on all our excursions. Together we went to the headwaters of the Mississippi River, putt-putt golfing, boating, walking, antiquing, and shopping. Around camp the activities were playing card and board games, visiting (in the cabins, around a campfire, and at the beach), playing with the baby, and eating.

Pictured are my sister (Evelyn) the golf pro, my nephew (Dwight) from Arizona, me, and my nephew's wife (Maria).

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Sitting on the Dock

Life's rhythm slows so much during a vacation that ordinary events seem extraordinary. Now that I am home, I long once more to sit on the dock with a cup of tea and wait for the day to begin or to fade.

Sitting on the dock, I watched the light play on the surface of the water as the fish silently broke the glassy surface to feed on insects. In the distance, I heard the mournful calls of the loons reverberate in the still air.

From the edge of the dock, life takes on a new perspective.

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Loons

After I read Annie's comment on yesterday's diary entry, I thought that many not be familiar with this bird. I was awed by the swimming speed of this bird. The lake where we stayed was clear and we could easily see the bird diving and fishing. It became a game to determine where it would resurface. I have copied some general information from the following website if you are interested. The photo was taken by Brian Small http://www.briansmallphoto.com/gallery/colo.html I am impressed by the quality of the photo as we tried numerous times without success to take photos.

General information about the Common Loon Minnesota's state bird, the common loon, is more at home in the water than on land. Built like a torpedo, it swims under water in search of prey. Minnesota has more common loons than any other state except Alaska.

Larger than a mallard but smaller than a goose, this water bird has a thick neck and a long, black bill. Its legs are set far back on its body, so it has an awkward gait on land. The male is slightly larger than the female, but otherwise the two sexes look identical.
Information was taken from the following website. This site has a lot more information about the loon if you are interested.
http://www.dnr.state.mn.us/snapshots/birds/commonloon.html

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Infectious Glee

Rose (my great-niece) may be only 5 months old, but she sure knows how to play a room. Within minutes, she had everyone tickling her feet, talking gibberish, and soaking up the sounds of unrestrained glee. I tried to capture her wonderful smile with my camera but failed every time. I got some good photos of her, but her smile was just too fleeting for the delayed shutter on my digital camera.

During the week, Rose was very patient and accepting as she was passed from person to person. Everyone enjoyed playing with her and trying to make her coo and "talk" and laugh. Rose is a happy baby and expresses her glee with warbles, laughter, and smiles.

The highlight of the reunion occurred on our last evening together when my niece and her husband surprised everyone with the announcement that Rose would have a baby brother or sister next summer. I look forward to becoming a great-aunt again and being re-infected with the zest of life. The past week at the lake resort gave my spirit the boost it desperately needed.

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Picking Up the Slack

I know it sounds stupid, but I have sprained my right thumb. I have no idea how I did it, but it aches even when I use the space bar. I have tried heat, BenGay, and massage, but nothing is working. I guess I will just have to rest it as much as I can for a day or two.

I am amazed just how much the lowly thumb does in a day that I have taken for granted. Things like helping to balance a cup when drinking or opening a bottle or door are seemingly so minor but are difficult without the thumb. Try it.

I am right-handed, and it is difficult to wrap my mind around the thought of having my left hand take on some of the responsibility. It just does not want to cooperate, and it feels very strange. Like it or not, the left thumb has been assigned the role of "picking up the slack" for the right thumb.

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My Roots

I read an article last week that mentioned the value of plants developing deep roots in order to conserve water. Deep roots also give the plant strength to withstand the strongest winds and allow it to stand strong and tall.

My curiosity was piqued, so I did some research on tree roots. I knew that some trees have a tap root that goes straight down to a water source, but I didn't know that as the tree ages the tap root becomes less prominent and the tree then develops an extensive lateral root system. This parallels, to some extent, my life. I saw myself as strong and independent of others. I had a tap root that allowed this independence and then I got PH. Now, I reach out for assistance, my lateral root system.

Other trees, like the aspen, develop a communal root system. The aspen, according to the Rocky Mountain National Park's website rarely establish themselves as seedlings in new areas. The vast majority aspen are "trapped" in the location in which they first established themselves, unable to relocate or ensure their survival with seed dispersal. (Does that sound anything like living with PH?) What surprised me the most about this communal root system was that each tree only lives for 40-150 years above ground, but the root system of the colony is long-lived, in some cases for many thousands of years, sending up new trunks as the older trunks die off above ground. Long after the visible portion of the aspen tree is gone, the underground root system remains behind, patiently waiting for a disturbance from fire, avalanche, or other occurrence that removes the conifer forest. If the sun's warmth touches the soil, it will stimulate the aspen's dormant root system, starting another cycle of growth. (http://www.nps.gov) I like that image. It gives me hope that the PH communal root system - our support for each other and the ongoing research continues on even after our eventual physical death.

Now, when I see an aspen grove, I will be reminded that I am not alone. Thank all of you for keeping me rooted and sane.

Photo by Max Bertola www.so-utah.com/ photos/aspen.jpg

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Successful Loser

About 10 weeks ago I began my quest to become a leaner and healthier person, and I am proud to report that it has been a successful journey. As of this morning, the scale reveals a 24-pound loss. The plan has been fairly easy to follow, and I have only eaten more than the suggested food on a few days: I had a couple of slices of birthday cake and some cheesy meals while on vacation, but for the most part, I have been very faithful.

I am gradually learning to satisfy my hunger urges with healthier choices. I have not exercised much because of the heat, but I try to do some resistance band stretches every day.

I hope that the pounds continue to come off so effortlessly, but I am anticipating and dreading the inevitable plateau. Right now, I am going to celebrate my success and the looseness of my clothes.

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Daddy's Journey

It suddenly occurred to me today that my father was my age when he was diagnosed with lung cancer. Treatment was pretty limited 40 years ago. He suffered two or three years before it finally claimed his life. He endured multiple surgeries and seemingly endless radiation treatments, but the cancer continued to grow and spread.

I was 12 when he began his struggle. Looking back, I can see how naive and sheltered I was before his illness. I grew up when my mom took my dad to St. Joseph in Denver and the Mayo Clinic in Rochester for his surgeries and treatments and when she finally brought him home. For months at a time, my brother had to shoulder all of the farm responsibilities, and it was my job to prepare the meals, clean house, do laundry, and go to school. I was a freshman in high school when the doctors told dad they could not help him anymore. Then, I didn't understand why the man who came home that last time was so different from the man who left. Now, I understand that he had been clinging to hope, and it was taken from him.

My parents could probably have sheltered me from a lot of daddy's journey, but they didn't. Over the years, I came to appreciate being allowed me to observe and to take a part in the process of dying. I know that seeing my dad's battle made me a stronger person: I developed empathy, and I gained self-confidence.

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He Doesn't Have a Clue

The last two days have been frustrating. I have waited both days for an oxygen delivery that did not arrive. Last week, James delivered a small canister of liquid oxygen because I caught them with a low inventory when I returned from my trip. When he left it, he told me that he would be back the following Wednesday (yesterday) with my regular size canister.

Yesterday, I rolled out the rugs to protect my floors from his delivery dolly and put down the temporary ramps on the steps, but James did not come. I called the office at 4:30 p.m. and who should answer but James. I identified myself and asked why he did not delivery my full-sized tank. He stammered and stuttered, and I knew immediately that he had forgotten. James said that he would squeeze me in tomorrow (today) before his regular delivery rounds.

I put out the ramps again. By 2 p.m. I suspected that he would not arrive, so I called again. I asked if I was on his delivery manifest for today. Theresa the receptionist told me that James was there. "Did I want to speak to him?" she asked sweetly. Once on the phone he told me that he couldn't get to me today because it wasn't my regular delivery day and that I would have to wait until next Wednesday, my normal delivery day. I told him the tank that I had would not last the weekend and that I needed a delivery.

I asked to be transferred to the manager. Once I explained the problem to her, she said that I would have a delivery tomorrow and apologized for James' attitude.

I just don't think he "gets it" that when a person needs oxygen, she needs oxygen, regardless of the delivery schedule.

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PH CD's to Share

I was unable to go to the Minneapolis PHA conference in June, so I purchased CD's for four sessions. I am willing to send one or all of these CD's to someone who would like them. These CD's may be kept or shared with other PHers.


The CD topics are:

• Exercise & PH

• Liver Disease & PH (Portopulmonary PH)

• General Medical Care: Surgery, Dental Work, Flu Shots, Working with Your Doctor

• Associated Conditions: Sleep Disorders, ILD, COPD, and Thyroid Disease


Send me an e-mail if you are interested. pinnut3@hotmail.com

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Visibly Invisible

Nothing has gone right the last four days. I feel invisible. I try to visit with people and end up feeling like I am talking to myself. My requests and words disappear only to appear as someone else's ideas. "What a great idea!" people exclaim, and I seriously want to add, "Thank you, it was mine just minutes ago."

At the end of worship service, everyone turns in the pews and greets those seated around them. On Sunday, I felt the hands in mine, but everyone seemed to look right past me. When did I become so transparent, so invisible?

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Beneficial Booklets

I found a wonderful series of booklets (online) from the University of South Australia that discusses "Transition in Chronic Illness." These eleven booklets are fabulous, and are available in pdf format. Yesterday, I spent most of my time absorbing the material. The topics covered in the eleven files are: Constant Change: The Shifting Experience of Illness, Grief, Loss and Fear, Shifts in Self and Identity, Relationships, Sexuality, Fatigue, Pain, Interacting with Others, Our Inner World, Self-care, and Understanding Transition.

The booklets are based on a three-year research grant that focused on a group of people with chronic conditions and their responses to questions. The project was coordinated by The University of South Australia and The Research Unit of the Royal District Nursing Service. I think they have produced a quality product that everyone with a chronic illness should read. I felt validated by their insights and experiences as I worked my way systematically through the booklets.

Booklet One ends with a message for health care workers: "The process of learning to manage illness can be overwhelming and learning to adjust to change takes time. Learning is about trial and error. Transition occurs in the course of every attempt at change. Transition is the state that change puts people into. The change is external (the impact of chronic illness might mean changed diet, changed relationships, change to employment), while transition is internal (a reorientation that people go through before the change can work). Some health workers imagine that transition is an automatic process for people… that it occurs simply because the change is happening. But it doesn't, it is a process that people have to work through. Transition happens much more slowly than change" ("Transition in Chronic Illness," Booklet 1, page 18).

The statement, "Transition happens much more slowly than change," really struck a chord with me. Even though I have had my diagnosis of PH since 2003, I have not reached the true state of transition; I still need to work through the changes that PH has required of me. I will re-read these booklets and digest all of the information more slowly.

Others may enjoy reading the booklets. Here is where you can find them. Go to Google and type the following in the search box:

"transition+in+chronic+illness"+"booklet+series"+australia
You should have 11 results.

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Souvenir of Minnesota

For some reason, the mosquito bites that I got in Minnesota nearly a month ago are still giving me fits. The bites were itchy a week after I returned home and then faded, but they were still visible. On Monday, they became bright red and once more were terribly itchy. I bought some over-the-counter, itch-relief gel and some oatmeal bath packets that have helped relieve the itching, but the bites remain large and red.

This morning I had my primary care doctor check it out, and he is stumped. He called another doctor into the exam room, and after fifteen minutes of poking and prodding the reddened areas and bouncing ideas off of each other, they admitted they didn't know what was going on. I was told to continue with the oatmeal baths and itch-relief gel. If the areas do not fade within another week, my primary care doctor will then do a biopsy.

Normal people bring home souvenirs from vacation, and I bring home a medical mystery.

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