Coping
- Alex Flipse
- Annie
- Arabella
- Bailey Rains
- Cheryl Switzer
- Edith Morales
- Helen P
- Helen Quess
- Jackie Shultz
- Jenn Lalonde
- Jennie
- Jennifer Davis
- Jennifer Radley
- Jo Jordan
- Jo Williams
- Jode R Cox
- Joellen Brown
- June Taylor
- Linda Washburn
- Lynn Smith
- Marcia Beverly
- Marge Holdren
- Merle Reeseman
- Nancy Sterns
- Ray Thigpen
- Raymond Ritch
- Sarah Ing
- Stuart Berwick
- Tina Silks
Patient and Caregiver Diaries
Patient Diary -- Nancy Sterns
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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.
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.
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.
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.
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.
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.
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.
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.
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.
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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