No Whining

There was a time I was too busy. Too tired. So sore. I complained about the daily hurdles of life--grocery shopping, cooking, cleaning, etc. I kept thinking that I had to push through it so these things would get done. Because, well, you know, who is going to do them if I don't do them? If I didn't sacrifice my time and energy, I would have piles of stuff, unopened mail, dusty corners, un-returned library books, and dirty dishes. I'd have no groceries and nothing to cook and my family would suffer.

I complained. Yet, now I realize there were very few times I had ever really felt pain I couldn't work through. And, I never knew what fatigue really was. See, if I had really known what pain and fatigue was, there would have been no working through anything. If I was truly in pain and that tired I wouldn't have been able to cook, clean, or go grocery shopping.  Because, when it gets down to it, true pain and fatigue stops you in your tracks. You cannot do what you want to do. And, you cannot do what you need to do. Things pile up and don't get done. Meetings go unattended. Events and holidays never make it on the calendar. And, even though one's brain knows these things have to be done, or should be getting done, there is no time or energy to sacrifice. All time and energy has to be focused on just surviving the day, trying to accomplish the basics like brushing one's teeth, eating, showering, and breathing.

When I am well enough I never want to catch myself whining about the daily hurdles of life again. Please stop me if I ever exclaim, "Oh, I'm just so busy." And, remind me that if I'm that busy, the universe is probably trying to tell me something.

Reporting...

I am due to report in... here in the blogging world. But, there seems to be little to share. I feel like there should be some substance, some point, some news behind a post rather than me getting on here and babbling.

I get very little done each day. I do but a small fraction of what I would like to do... and what I used to do. I make sure my daughter is doing her schoolwork. I spend a few minutes prepping it, checking it over, and helping her with things she may be stuck on, or spend more time with her on the more involved projects. Then, I take care of the most pressing issue of the day... like calling insurance companies or ordering and organizing medicines. A lot of times I try to nap on the couch in the afternoon. At times I am successful and it makes me feel better in the evenings. I take oral medicines four times a day and have to change the cassette on my IV pump once a day. (My husband has been doing most of the work mixing the medicine in the evenings.)

If I want to do something, like bake cookies, or go somewhere for a few hours, I have to plan ahead. When I go out I have to have a ride and help, and I have to save my energy. I have to make sure I take several oxygen tanks and my medical bag. Often, I'll try my best to schedule a down day or two between outings. And, depending on how I handle the outing, I may need a couple days to recover. The weeks I spend a day or two in Cleveland are the worst.

This month I have been to two different department stores for the first time in weeks. And, the only reason I've been able to do this is because I finally broke down and accepted the fact I could... er, need to, use the electric scooters at the stores. My oxygen tank proves to be unwieldy though and makes it harder to maneuver around the store. Most of the aisles are impassible and many people seem to not even notice, or care, that I am trying to get by, or that I'm stuck waiting until people allow me through an opening big enough to accommodate the scooter. It feels a bit like when, stopped at a crosswalk one will wave some slow person through, and then for the next five minutes a cascade of people use the crosswalk while one tries to patiently wait.

Just going outside to get a few minutes of fresh air proves to be too much trouble now. The joy no longer outweighs the effort or the energy I have to spare. I have to disconnect my oxygen from the big compressor, hook up to a tank, and preferably, make sure my IV line is nicely tucked away so it doesn't catch on any protruding objects. By the time I walk out of the house and down the whole four steps on the porch I can feel my oxygen saturation dropping and my poor heart thumping. My poor heart. It's so tired of trying to overcompensate for the lungs.

In the evening I work my way upstairs, stopping twice for breaks, breathing, coughing, letting my oxygen saturation bob back above 90% before tackling the next few steps. Once upstairs, I prep myself for a shower.

Showers are an ordeal. In attempts to keep them dry, I cover the joints on my extension tubing and cover the catheter site that goes into my chest. I wipe down the catheter area with alcohol and a skin barrier wipe and then I cut the Aqua Guard cover down to fit well enough and add extra tape. The Aqua Guard covers are a whole lot bigger than my site and If I leave them as they are, they just pull up and get everything wet. Then I'd be forced to change the whole dressing at the site for fear that if I didn't, I'd get an infection. I have to take showers with my oxygen on. I hang my IV pump on the towel bar. The tubing snakes out of the shower and water trickles down, making a puddle of water on the bathroom floor.

Going to sleep at night is becoming more of a challenge. I'm still doing well cutting out the sodium, but with the warm, humid weather, I've had a hard time limiting liquids. I miss guzzling water. Even though I am not guzzling liquids, I find it difficult to resist several small glasses of cold tea each day. Of course this adds to the water retention, the swelling, and just general achy, puffiness. Lately it has been a toss and turn battle, trying to find a spot where it feels comfortable enough to attempt to sleep. If I were not sick I could get up and read a bit or work on a project. But, I know better. Even if I cannot sleep my body needs to just rest.

If I can get settled and somewhat relaxed, my oxygen saturation goes up and my heart rate slows down. I feel better, even more normal, during that flitting moment between being awake and drifting off into sleep. I suppose, it's as normal as I am going to feel with an oxygen tube secured to my face and an IV line running from my chest to the pump on the bedside table. It's this quasi-dream-like state that reminds me of what used to be, before the loss of lung function and before the heart failure. It also reminds me of the hope we hold close, knowing that one day I will come home with new lungs.

Getting my ducks in a row...

After two days of testing and appointments at the Cleveland Clinic at the end of May, I arrived home in a bit of a fog. Shocked, but yet, not surprised. I felt better after a hug from my daughter and a night in my own bed.

I was told I don't have long without getting new lungs. I have to finish the testing and get listed. Soon.

June was a blur. I overdid things, especially in the later part of the month. And, I paid for it... ill and swollen, and it has been taking several days to recover.

Remember those two bags I talked about? I'm still packing. Most days I feel like I am trying to beat the clock and doing so with limitations due to my medical condition. I'm getting my ducks in a row, making end-of-life decisions, going through personal possessions, and working on scrapbooks. I won't get everything done. But then, that is what the other bag is for. Everything else gets packed in there. Sentences around here are frequently started with "When I get my new lungs" and "When I can breathe again."

Not all ducks are orderly. There are a few that weave in and out, and another that always stops to look at something and falls behind. I'll probably never get comfortable with this uncertainty but I must accept it. I may not know where I am going, and my ducks are in a, er... sort of a row, but I must paddle onward.

Optimism

There is something I wish I had right now. It is something I miss that so many take for granted. And, that is health.

I realize I will never be completely healthy again. So, I will happily take the only option left for me... a few additional years on recycled lungs.

To prove how optimistic I am, I bought myself a gift... a five year journal and a seven year pen.

The Talk

People have asked what I've shared with my daughter. They want to know how much I've told her about my condition, this disease, and the outcomes of not surviving lung transplantation. I've told her mostly everything. The next question is usually: "How is she handling all of this?"

My daughter is handling this as well as can be expected. She will be nine years old next month and she has a pretty good grasp on what is happening and how lung transplant works. She knows that I am really ill and that I can die. I can die waiting for lungs. I can die in surgery. I can die of infection or rejection after transplant. She's probably more matter-of-fact with it than most of the adults I know. No walking on eggshells, nothing to hide. Just pure honesty and curiosity. She's been going through all of this with me... some times in silent contemplation and some times with extra cuddles and a few tears.

"If you are not here," she asked the other day, "is it my job to make sure daddy eats healthy food?"

I love that kid.

I sat down with her on Friday and I explained that we needed to work on funeral plans, just in case. She expressed her feelings of how she thinks it's unfair because I was healthy and never smoked and there are other people who do not take care of themselves and will live a whole lot longer. I agreed, it sucks. And, it seemed, once we both acknowledged it sucked, it was easier to move into talking about organ donation, cremation and burial, and memorial services.

I know a couple different women who lost their moms when they were young. Their moms downplayed their illnesses so much so that one of them told me she did not realize her mom was dying. She didn't even know what hospice was. They both expressed disappointment that they had missed that opportunity to know beforehand. Each had their own reason or rather, a few different reasons, they wish they had known. Had they known, the death would not have been such a shock. Had they known, they would have asked more questions or spent more time with their mom. Had they known, it would have been easier to get through the hurt of losing her.

I am doing my best to provide the opportunities--opportunities these women missed--to my daughter. By doing so she can work through some of the emotions and ask questions while I am still here. When I first learned how serious my condition was I found a publication by the American Cancer Society called "Helping Children When a Family Member Has Cancer: Dealing With Diagnosis" helpful. It gave me simple steps to start a conversation. And, even though it is geared towards cancer patients, I feel the publication can benefit anyone facing terminal illness.

Ready or not...

In an earlier post I talked about Tiffany Christensen's book Sick girl Speaks: Lessons and Ponderings Along the Road to Acceptance. It is a very positive read and I appreciate her insight on illness. In her book she described a time in her life when she was sick enough for a lung transplant and she knew what she was up against. "I had to plan for both possibilities equally," she wrote.

"I continued to plan my funeral and say my last words. At the same time I dreamed about all the things I would do once I was well. The image I used was packing two suitcases for two destinations... I had no idea where my bags would end up," she explained. She knew both were possible.

All of this seems to be happening too quickly, especially since I've been moving at snail speed for months now. But, it is time. I must pack my suitcases.

Over the next few months I should try to get my affairs in order, make my final wishes, tie up loose ends, say I Love You. That's one bag.

And then there's the other bag. I will imagine waking up with new lungs. A new beginning. I will need to pack lots of hope--hope that my body will recover from surgery quickly, hope that I respond well to the medicines, and hope that I can get a few good years out of the new lungs.

I tell myself I'm lucky. I get to pack. Some people do not get that opportunity. And, I can pack two bags. Some people only get to pack one. Perhaps I won't remember to pack everything or I will run out of time. Whatever I have packed and whatever I have managed to prepare will just have to do. And, when the time comes, I hope to return with renewed strength, a bag in hand... heavy with hope.

Agendas

My friend who has a similar disease calculated how much time she spends on her disease--everything from mixing medication to doctor appointments. She found that BEING SICK requires at least thirty hours a week--as much time as a part-time job. She pointed out that the rest of the time she functions at about 60% of normal. (Unfortunately for me, I feel as though I function even lower.) No wonder we get very little done...

Our agendas are sparse. They have to be. We can accomplish only so much in a day. And, our agendas have to include chores associated with being sick. For us, it's a matter of survival. Both of us have shared how we lament the loss of our old agendas--completing chores off a never-ending to-do list and not being hindered by illness.

Tiffany Christensen wrote a book called Sick Girl Speaks: Lessons and Ponderings Along the Road to Acceptance. She shared a letter she sent to her to her doctor after she overheard him talking about her in the hallway of the clinic. She was dying of chronic rejection after a lung transplant when she wrote: "I'm sorry that I've made your work day a little harder, a little longer. I'm trying to live with terminal illness and you're trying to get to lunch. Our agendas are so different."

How many people rush through their day, complaining much of the time, never once considering how one's own agenda may affect another? Do we leave enough room on our agendas for slowing down to help a fellow human?

Do we leave enough room on our agendas for being kind?

Homeschooling

A few people have asked me how we are handling the homeschooling and if it has been stressful on me.

In a typical month we school Monday through Thursday, and occasionally on Friday. The majority of schoolwork is completed by lunch or early afternoon each day. At times we have field trips or special projects that may cause us to rearrange our schedule, forcing us to work in the afternoon and/or catching up on a different day. We've always used a computer program for math. But, since my diagnosis, we've been trying some additional online curriculum. This frees up some of my time because the online program does the preparing for me. It's already set up and ready to go when my daughter gets on the computer in the morning. Through the summer we have continued to school but with a much lighter load--approximately two mornings a week. We don't take time off for spring break. Nor do we take too much time off around the holidays. This enables us to keep ahead and take off time when we need it throughout the year.

Once a month we have Girl Scouts, American Girls, geography; and at times, other classes and activities done as a group with other homeschoolers. Our Girl Scout troop is very active and always doing fun activities that are helping the girls develop interests and help their community. The American Girl group is a chance for the girls to share their love of reading and American Girls. The group coordinates crafts and activities alongside the books the girls are reading and we use the books as a springboard for additional history studies. Since starting the group, we've gone from the 1700s to the 1860s. The geography class meets once a month to give the students a chance to give a presentation on what they've learned about a particular country. Each month they are assigned a new country and they can pick what they want to focus on. It can be the clothing, politics, food, a particular animal, etc. They prepare their report and then show up ready to present what they learned--geography and public speaking rolled into one. Also this year, we've done some science and Ohio history with another homeschooling family, sharing talents and supplies.

Stress? Some days can be frustrating. How many times do I have to explain the order of long division? But, really, what would I rather be doing? Last week was filled with math and grammar and US map skills. And, we had geography. We studied Spain and my daughter wrote an opinion piece about bull-fighting. I watched her stand in front of a group of people and confidently deliver her report. When we returned home we made milkshakes and relaxed. Sick or not, I don't want to miss a second of her childhood. We do things together. We create. We learn. If this were my last day, this is what I'd want to be doing.

Mortal

Many years ago, when I faced a significant loss, a dear friend sent me a book called When Bad Things Happen to Good People. It was written by Harold W. Kushner, a rabbi, whose son died at the age of fourteen from a disease called progeria.

I read several book at the time that focused on grief. Most of them were a bunch of fluff; many written by psychologists who had never experienced a life-altering loss. But Kushner's book was one of the only books that made sense to me. I've kept that book around as a reminder that death is "an inevitable consequence of our being human and being mortal, living in a world of inflexible natural laws." Recently I dug it out and re-read it. I wanted to see if it was still pertinent today as it was then. And, indeed, it is.

About half-way through the book Kushner reminds readers of Calypso in Homer's Odyssey. Calypso, a sea princess, was a child of the gods. She, being immortal, was fascinated with Odysseus because he was a mortal and will not live forever. Calypso envies him because his life is full of meaning and his every decision more significant. Because his time is limited, "what he chooses to do with it represents a real choice."

Like Odysseus, we are mortal, and we will die. Death is the hazard of living. Every day people die from accidents and incurable illnesses while some die in their sleep at a very old age. Tomorrow is not guaranteed.   A lot of people forget this; some ignore it. Others wake up each day rejoicing they are still here. There are those of us who have been issued a best-by date and we are trying to pack as much meaning and significance into every day we have left. We cannot ignore it and we cannot forget. Our time is limited and we have to make a real choice. Calypso must be envious.

Whittling

For over a year now I've been whittling. As my energy level plummeted and my health worsened, I started cutting down on responsibilities and engagements. I've stepped down from various committee positions, volunteered less, and said no to more requests. I've taken on no new overly zealous projects and made no promises.

Some days I feel as though I'm not the one doing the whittling... that it is the disease that is whittling away at me. I can no longer be a leader or the person that everyone counts on. I can no longer be in charge of important things, events, or finances. My life is too iffy. I have handed over things I once controlled and it has been hard. Painful. Once so active in so many things, now I move slowly through my days. I take half a hospital just to leave the house.

Just like a block of wood, my life, as it was, is slowly getting smaller as little shavings are being whittled away. Each shaving falls to the ground and is blown away by the wind. Each shaving holds a dream, a project, a once upon a time, a bit of what was me, a hope of what was to come in the future.

Whittling through piles of paper, folders, and drawers. Adoption paperwork... in the recycle bin. CPR training to be renewed... how would I breathe for someone else when I cannot breathe for myself? Pinterest boards pinned with ideas for retirement... delete. Photocopies of archival materials and old research... sent to fellow historians. Papers, projects, and more... handed over.

I have hope, that after all the whittling, my future will be something just as marvelous as I once believed it would become.

Sifting

Lately, I've been doing a bit of what I call sifting. I take a bookshelf, a box, or a drawer of my things and sift through it. And I ask myself: Will I use this again before I die? Or, will I read this again before I die? And, will my family want this when I am gone?

There are some items I wonder... maybe. Then I ask myself: If I did have some time left to use, to read, to study, to do, would I do THAT? Most things, I think probably not. And then I think up about one hundred other things I'd rather do with my precious time.

Some are things with little connection to my emotions. I can easily let them go. I ask friends if they want this or that, or pop the items in the goodwill box. After all, if I really wanted to, these are things that can be replaced. But then there are the items that hold more meaning and are harder to let go. It's not so much that particular item, but the memories that belong with it. Or, that I had acquired them with the intent on using them more or doing something with them some day. There are items I spent a lot of time, energy, and money on. And, there are items that somewhat defined me. They are my past, my former self, the old me. The new me has limitations and needs to clear out things and streamline her life in order to function more efficiently and focus.

I have collected some pretty interesting things in the past thirty-something years. And, as we all have different tastes, talents, hobbies, and interests, I can see why some items can only be appreciated by certain people. By sifting through and passing along many of my favorites, I have been able to share these things and make people smile. Many of my friends are happily adopting part of my past. They are pleased I have recognized their interests and the items I've passed on will be used, displayed, and treasured now and long after I'm gone.

A friend expressed her concern. She feared that what I am doing is a sign of giving up. But I assured her, I am not giving up. Believe me. I cannot give up. This sifting is part of accepting what I cannot change and preparing myself for battle. One must see these things as they are... just things. Because of my illness, I cannot be burdened by too many extra things. I admit, I need things. I like things. And, there are items that make me smile. Things are great when you are well. Things are a great distraction when you have time. Things are fun when you have the energy. But, I no longer need distractions. I no longer have the time or energy. So now, most things seem like a burden. Things need to be organized, stored, and cleaned. Unfinished projects lurk in corners and mock me. Wonderfully useful items sit unused. These things become constant reminders of a life I was forced to give up. By releasing these things, I not only give them a chance to bring happiness to someone else, I gain energy to focus on my family and health. I am preparing myself--physically and mentally--to fight the battle before me.