Distractions

My friends are great. They pay attention. In fact, I've been reminded by those who don't live on Facebook (and are not close enough to check in on me) that I haven't posted since the 14th. I really should do a better job.

But, at times, I cannot focus and have no idea what to write about. Or, I'm just too tired to write... or think. The medicines and lack of oxygen to my brain have certainly made me less cerebral. I surprise myself at times. Some of it is just... well, so random. (I risk sounding like my daughter.) For example, I started watching the Ellen DeGeneres Show. Me watch TV? And it's not a documentary. I know! And, yesterday morning, I actually clicked an internet link to take me to Tiny Adorable Animals That Will Make You Squee. (Apparently squee is a word. Where have I been the last few years?) Then I was lured to click on another link: 32 Reasons Robert Downey Jr. Is The Most Perfect Man In The Universe. How could I not click that?

That Iron Man and me, we have something in common. We both need to be hooked up to devices that keep us alive. Tony Stark, the Iron Man character played by Robert Downey Jr., was hooked up to an electromagnet in his chest that kept shrapnel that was in his body from an explosion from reaching his heart. He invented an implantable version that made him more mobile. (Comic book nerds are welcome to correct me on any of the technical details.) In some ways, it's like the Hickman catheter implanted in my chest. But, in shape and style, it reminds me of the pendant-style oxymizer that is used to maximize oxygen concentration. I think I could have a terrific Halloween costume in the works. I'm just not sure an oxygen tank would fit in the Iron Man suit. Perhaps Stark Industries could come up with something. Hey Tony, can you work on that?

But I realize that even though Robert Downey Jr. is certainly a worthy distraction, an update is overdue. After returning from Cleveland we tried titrating up on the Flolan again. I didn't do well... again. I felt sick and agitated. My oxygen level was dropping more frequently and recovery time was longer. So, last Thursday I came back down to the same amount of nanograms I left the hospital on in January. Needless to say, there were a couple weeks in there that seemed more rough than usual.

Also, I'm getting better about being open to accepting help and allowing my life to be more transparent. I can no longer hide behind this nasal cannula or my super hero persona.

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.

A healing heart...

I returned Thursday night after two days of testing at the Cleveland Clinic. I'm still gong through the necessary steps for the lung transplant listing, and had several tests and blood-work done. The poking was never-ending. Every time a nurse, therapist, or doctor turned the corner, she/he was ready with some form of needle. I had blood draws from both arms, a blood draw from the wrist, a small series of injections on my upper arm for allergy testing, and the Hepatitis A and B vaccine in the other upper arm. I can be thankful though that everyone I encountered was pretty good with their aim. And, I got my favorite phlebotomist for the main blood-draw that required several vials. My husband saw her in action and commented later that it was like watching a magic trick. One minute she had the needle in her hand and the next it was in my arm and blood was coming down into the tube. This girl is good.

The two different blood draws at the same time is something that was implemented after an error in blood typing took place at Duke University about ten years ago. So now, in order to double-check and confirm a recipient's blood type, they have two different people draw one's blood. Two people armed with needles and two different pokes. Thanks a lot Duke University. I've had my blood typing done a couple times before and I am happy to report it has not changed. I'm still the same type I was a couple months ago... and the same type I was years ago. No surprise there. So, there should be no mistakes in that department, right?

The heart can be a resilient organ. And, if healthy otherwise, and treated well, it can bounce back from stress and trauma. And my heart, I'm happy to announce, showed a tiny bit of improvement. And, even though it was a tiny bit, I was happy. I have been told that, in my condition, as long as things are not getting worse, it's good. The heart is still working hard, still has a bit of fluid around it, and the the right side is still dilated. But testing reveals it's not working as hard as it was.

The diseased lungs appear to have responded well enough to the Flolan treatment. The Flolan dilates blood vessels and is very risky. It's an extremely powerful drug that is administered through IV tubing that runs to a port in my chest--a direct line to my heart. It is dispensed through a pump that I wear around my waist and the medicine cartridge must be kept cold--sandwiched between ice packs--at all times.

But drugs are stupid. Flolan doesn't just dilate blood vessels in the lungs. It dilates blood vessels everywhere. So, some of the side effects I have to live with include leg pain, jaw pain, and headaches. But, it's keeping me stable and that's the important thing.

I am still at a fairly low dose of Flolan, so we are going to try raising it again each week in very small increments now that my body has had some time to get used to it. When we attempted to raise it after returning from the hospital I didn't do well. The side effects overwhelmed me and my blood pressure dropped significantly. I was miserable for days. The doctor had me drop back down to the previous dose and I felt better. It's not unusual to feel awful the first couple days after increasing Flolan, but side effects should always return to a tolerable level and one should not experience a significant drop in oxygen saturation, blood pressure, or experience trouble breathing.

The lungs are not so resilient and a transplant is in my future. We know that things can change at any time. So, the social worker says it's time to think about fund-raising because we will need help. The transplant surgery is extremely expensive, even with insurance. And, the medications needed afterwards are expensive. There are other costs, too. There's the hospital stay, the after transplant care, lodging, travel expenses, food, etc. It feels uncomfortable to put this need out there but we cannot get through this alone.

There are non-profit organizations that hold donated funds for transplant patients and the social worker gave us information for a couple organizations to consider. I struggle with this. I never intended to be a financial burden on my family. We had always hoped to pay off the house and the student loans and help our daughter get through college when the time comes. We've always lived within our means and budgeted trips and larger purchases, avoiding the all powerful credit card trap. But this illness has ruined all of that planning. We now owe thousands in medical care. We are still paying on medical care I received last year. And, the bills continue to roll in, adding to the ever mounting debt and stress. So, even though I struggle with this, I know I must, for the sake of my family, be open to this type of help.

Speaking of help... April is National Donate Life Month. If you want to learn more about organ and tissue donation, visit the Donate Life website. Donate Life is also on Facebook.