Living on the frontlines

With everything truly important on my list of things I need to blog about, we’re going with a really important one today – Star Trek! I don’t think most people would make me for a trekkie, but I’ve always loved it. In general, I’m not a huge SciFi person, but I loved/love Star Trek because of its soul. It isn’t just space battles and space monsters. It isn’t just good vs evil. Star Trek used its universe to say things that, in our universe, might be sensitive. It allowed/allows us to look at ourselves in the safety of another place and time. In such a polarized environment, we could use a little more of that. A few months ago I finally ditched my Netflix subscription and added CBS All Access to my Amazon Prime account. (Might be better named CBS Some Access, but that’s for another blog.) I was dying to see Discovery, the new Star Trek, but hadn’t signed up for CBS because my budget is tight. Even a few extra dollars can matter. But, I found I was watching a few series on Netflix, and t...

This week I celebrated the second birthday since my lung transplant. When I catch myself having a thought about how old I’m getting, I remind myself how hard I’ve worked to get this old. It didn’t just happen. It’s perhaps unusual that you can feel like the mere act of existing is such an achievement. I worked hard, but so did so many people along the way – a LOT of people. This year one of the exciting parts of my birthday was getting to send the oxygen equipment away. The transplant clinic was leery to let me send it away for a long time. They were worried I’d have another complication and require it again, even if only for a short time. It’s been annoying to me because I haven’t needed it (with the exception of a few days last June when I had rejection) since I’ve been home. Still, I’ve had to keep paying for it every month. Plus, I live in a tiny apartment! This equipment takes up valuable space that is already in short supply. On Friday, when Carlos, the guy from the oxygen compan...

I’ve always had an interest in genealogy. I haven’t done anything about it really. Never had the time I guess. Perhaps it’s because I’ve always been a fan of studying history. Finding ancestors somehow feels like a personal connection to the past, as if the DNA populating my cells has some sort of time travel awareness of what has gone before. Of course that’s crazy. When I was diagnosed with Hermansky-Pudlak Syndrome my interest in my roots, especially my Puerto Rican roots, intensified. Maybe it was the realness of mortality or the connection between my newfound fascination with genetics and how it connected me to my family history. For years I’ve thought about whomever in my family tree might have had HPS. They would have lived so long ago that they wouldn’t have known what HPS was. It wasn’t really identified as such until 1959. My grandma Cockerill, whose father was from Puerto Rico, talked about relatives in Puerto Rico she heard about as a child that had died of tuberculosis. Co...

I don’t want to be a cliché. People that get a “second chance” at life are supposed to tell everyone else how much they should appreciate life. The roses smell sweeter. The sunsets are more vibrant. Blab blab blab ba. The thing is, a lot of days, it is true. There are days when it mystifies me that marching bands aren’t walking down the street every day followed by fireworks every evening because I’m still here. (How is that for self-involved!?!) I mean it in the sense that there are so many reasons why I shouldn’t still be here. The cliché annoys me because it assumes no one really appreciates living until they nearly die. That isn’t me. I appreciate living enough that I fought like hell to still be here. I may be broke. I may not have a lot of the things in life you’re supposed to have at, ummm….middle age….but I do have a strong sense of purpose. I’ve spent most of my life not assuming I’m going to live forever, and I know I’m not the only one. So, I’m not going to lecture anyone ab...

Actually, as I write this, it isn’t one year post transplant. It’s 13 months post transplant! WooHoo! And the best part is I’m not tardy posting because I’ve been at medical appointments or too tired. I haven’t posted because I’ve been too busy! Really busy, with my old fashioned normal stuff!!! I’ve felt more like myself in the past three weeks than I have in a long time. My legs are still a problem, but they are improving. I’m still having trouble with stairs and inclines, but more from a leg standpoint than a breathing standpoint. Mind you, if the old legs would work I might get out of breath, but when you’re moving very carefully, it isn’t very cardio-vascular. These past few weeks I achieved some big personal milestones – big to me anyway. I attended the 26th Annual HPS Network Conference. My dad called to ask how the conference went. I’m embarrassed to say that before my little brain could process all the great things that happened at conference, my very first thought was – it ...

I’m on the home stretch of making it to a year post transplant. The first year feels like such a big mile stone! So much has happened! I tell people it has been a roller coaster ride, and I’m not kidding. I’m at a stage where I think I’m experiencing post transplant PTSD. Actually, I wonder if the psychological world needs to come up with another term for the emotional fallout from traumatic medical events. For me, at least, it isn’t the same as what I read about in people who have experienced PTSD from combat, assault or other types of trauma. I don’t startle easily. I’m not worried about what might be around a corner. What I am is emotional. I know some of that could be the medications. I can cry at the drop of a hat. Little things bring back memories and the waterworks just starts flowing. This time last year I had the transplant clinic appointment where they told me I should start thinking about coming into the hospital. It was one of those mile stones I had prayed I’d never reach....

This is, hopefully, my last month of having to do nebulizer treatments four times a day for an hour each time to combat one of the infections that came with my new lung. One of the most frustrating things about these treatments is the time. It wouldn’t be so bad if I could get work done while I was doing it. The tricky part, however, is to keep the medication flowing properly, I have to hold my head level and straight. Not seeing well, I tend to bend forward to look at everything. I’ve tried doing the HPS Network’s social media while I’m nebbing. That works as long as I can hold my phone up right in front of my face without bending my neck or chin. Eventually, my arms just get tired! I’ve tried knitting. That works as long as I’m doing something very simple. I’m not a talented enough knitter to do complicated stitches without looking (although I have blind friends who can do it.) Then this morning I had a shower idea! My best ideas tend to come to me in the shower. It might be hard to ...

There have been times these past few weeks when, despite the ever growing mountain of work on my desk, and despite the level of stress I feel about not being more efficient and reliable, I have to surrender. Some of the medications I have to take can make me very drowsy. To try to help the weird feeling I’ve been fighting in my legs for months, the transplant clinic decided to increase one of my medications for neurological pain. My legs don’t hurt. The problem is they don’t anything…hurt, get tingly etc. They feel like your cheek does after you’ve gone in for a filling and the dentist has given you a numbing shot. You can still “feel” in your cheek, but you can’t really, or that filling would hurt like crazy and they’d be peeling you off the ceiling. That’s the way my legs have felt since the end of June, to varying degrees of weirdness. I’m not sure why increasing this medication would make them less numb as opposed to more numb, but I’ll try anything. I had worked to wean myself dow...

Living with a rare and chronic illness is never easy, but try doing it in the face of an epic natural disaster – no water, no power, no fuel – forget easy access to medical care, medical equipment or medications. My family connection to Puerto Rico is distant. My great grandfather was from the northwest part of the island. He came to the mainland United States to go to college, and eventually became a professor at the University of Oklahoma. He was a linguist. While I inherited an HPS gene from him, sadly I didn’t get the language gene. Living in Europe, I learned a lot about the history and culture of the other aspects of my heritage, but I never knew much about Puerto Rico. My grandmother would tell us stories about visiting the family plantation when she was a child, but that was about all I knew of the place. When I was diagnosed with HPS, one of the blessings (instead of curses) that came with the diagnosis was a sudden intimate connection to the island. Suddenly I knew tons of ...

Recently my grandmother (grandma) Meribel Cockerill passed away. She was born on July 11, 1917 and passed away on March 23, 2017. I can’t even imagine living that long! Friends are telling me they are sorry for my loss. I am sorry, but celebrating. She was not well for many years and honestly, she was miserable on this earth. Most of my life I never lived near either set of my grandparents. I did, however, live with my grandma Cockerill for six months after my ostomy surgery. It was one of the blessings that came out of a pretty horrible year. My grandfather had just passed away, and my mom had to return to her job in Germany. I was a LOT better than I had been during the nearly two months I spent in the hospital – but I wasn’t well enough to go back to college or be on my own. Often staying at my grandparents could be stressful. I couldn’t drive, so I couldn’t get out to go to the mall or grab a hamburger. My grandparents didn’t have 18 plus years of experience raising a child with ...

Today is National Donor Day – a day to highlight the very special gift that those who agree to become organ donors give to the 120,000 of us currently waiting for new organs in the United States. It is the kind of gift that words fall short of. Hallmark doesn’t make a card for this. How could they?  I’ve noticed from the experience of some friends who have received their lungs that the time frame before you are allowed to contact (through UNOS) your donor family has changed. They told me in my transplant education that while I was still in the hospital, I’d be given a card to send to my donor family. It is, of course, up to them whether we ever make contact. I know if they are willing, I will want to do it.  I can’t imagine writing that kind of thank you note, especially while still in the hospital – but I could never not do it! I’ve been thinking of writing a note and having it in my things ready to go so that it is well thought out, and ready to go.  What do I say?...

On previous anniversaries I’ve blogged about where I was on Sept 11, 2001 and how I spent the day. I’ve blogged about my thoughts for all of those affected by the disaster. Today, amid an atmosphere so polarized, I want to remember the day after – Sept. 12th. When I was a kid my grandparents’ generation talked about how America rallied together during the war. There was a feeling of unity that they remembered well. On Sept. 12th, I walked through my neighborhood in Overland Park, KS to get some fresh air. Every house, every single one, displayed the red, white and blue. No one’s house was Republican or Democrat, Christian or Muslim, White or Black – we were Americans. We were united in the way I imagined when my grandparents talked about the war. I spent the day of Sept. 11th, and several of the following days, doing stories from the American heartland for the South China Morning Post. I remember doing one about flag sales and how Americans were displaying the flags. By Sept. 12...

There is something I turn over and over in my mind. It holds me back from blogging sometimes because I never reach a clear guideline about it. How much do we say about living with HPS, and when do we say it? My background is as a journalist. Telling the story is just in my DNA (sort of like HPS – grin). Is there ever a down side to telling the story? Most of the time I don’t think so, but there are times I question myself. What motivation does anyone have to find a cure if they do not truly understand the consequences of not finding a cure? Unfortunately, by the time we HPSers start to more fully understand the consequences of not having a cure, we are often too ill to do much about it. We need those who are not struggling with lung disease, bowel disease, or bad bleeds, to be our alleys and help us do the work it takes to find that cure. It takes a lot of work. Few people, even people very involved in the HPS community, truly appreciate how much work it takes. The world is full of c...

Evidently timeliness is not one of my New Year’s resolutions since it is nearly half way through February and I’m just now posting this blog entry! Perhaps a better resolution for me is to not beat myself up so much about all of the things I can’t do. That’s getting to be a big one! Honestly, 2016 didn’t come in with a bang. Rather it came in with a sniffle, cough, headache etc. I’ll blog more about that when I do a health update. I didn’t do so great with my 2015 resolutions. My goal was to paint 12 paintings. Well, I did three. Part of the problem is that my stamina just isn’t what it once was. I feel okay, but the number of productive hours in the average day is shrinking. I do the most urgent things first, and there isn’t always anything left for the things I enjoy or the things that just make me happy. That is not a complaint, however. We have to make choices about how to spend our time, and while I’d love to do the things I just purely enjoy, I do feel like the work I am doing in...

This is the back side of my building. My apartment (from the back) is on the second floor. Here it is covered by the trees.  Our street  Fin's Flexi-leash field Park near our house Front of our apartment building - we are the first floor (from the front) on the right. We love the shade!  In order to keep all of you that are helping me in this journey, or helping support the HPS community in general, I’m trying an experiment with blogging. I’m going to try to write several blog posts when I am able to blog, and then schedule the posts to stagger over a few days. Just FYI, lest you think I suddenly have more time to blog! Grin! One of the things I’ve been eager to blog about, is my new neighborhood. I do miss my old neighborhood a lot. I miss the people and Homers. There just isn’t a comparable place here. Here, when you do find a little coffee shop, they don’t exactly go out of their way to make it a great place to stay a while and work. This is...

There were a lot of things that came up through this process that I wanted to record, not so much for the vent factor (although I could have used that), but because I wanted to pass along the thoughts to anyone else with HPS that might be looking at the same journey down the road. I grew up as a military kid. In my early adult life I moved every year or two. Since I moved to Danish Village, however, I hadn’t moved for 14 years. I’d lived in Kansas City longer than that. Boy was I out of practice when it came to moving and apartment hunting! Finding an apartment when you are ill, on disability, and moving across the country, is an entirely different animal than what I had done in the past. It wasn’t moving across town. I didn’t really have enough income to impress potential landlords or the promise of a great new job that was sure to provide that impressive and comforting income. Poor Ryan and Sara, my brother and sister-in-law, had to investigate the apartments. I know that was extra w...

My dad and his wife have been gone a few days now and gradually Fin and I are working into the rhythm of a new normal. I think it might take months to find a home for everything. If I did nothing but put things away, it would probably be finished in a few days, but I have so much else to do! There is so much ahead that if I think about it, it is just overwhelming. So, I’ve been putting tasks on small note cards. I pull one out, work on it until it is finished, and then enjoy the satisfaction of ripping up the card. It might not be a permanent ritual, but it is working for now. My allergies have been horrible! My eyes water. My nose is stuffy and running. I’m coughing again. I itch from head to toe. I’ve been truly ill in my life, and I’m here to tell you allergies can make you down right miserable! The four allergy medications and three inhalers I’m using to keep things manageable do an okay job, but I’m not sure if that’s because they help, or if they just make me so tired and loopy I...

This past month has been nothing short of a saga rolled into an  odyssey . I have so much to blog about it isn’t even funny! I had wanted to blog along the way, but by the time I finished the move-related tasks of the day, I was simply too tired. Part of the move I didn’t want to blog about until we were through it because being public about it, or publicly critical in any way, could have jeopardized the people who were trying to quietly help me. So, needless to say, I have a lot of stories to tell. But, for right now, I just want to post to say Fin and I are well and safely in our new apartment in Arlington Va. The apartment, as I expected, is very small – just 540 square feet. It is the size of the apartment I lived in when I was first in Kansas City. The problem is back then I was 22ish, and owned almost nothing. Now, I’m 41 going on 42 and I have stuff! I gave a LOT of things away as I was leaving, had various charities come to get bags and boxes of things, as well as furn...

The move saga continues. Finding an apartment in Arlington has proven to be a huge job. It would be easier if I were moving like a normal person. The options would be wider. Instead, I’m trying to find an apartment in a very specific price range to qualify for a housing grant. I need something Ryan can get to if he needs to and it can’t have too many stairs (although some are okay.) And then there’s the laundry. I’m trying to get something with a laundry in the building somewhere. I think finding one with a unit in the apartment just isn’t going to happen in my price range. I think I am going to have to go ahead and go to Arlington and put all my things in storage. This has been pretty upsetting for several reasons. First, it just adds more cost to the move. Second, it means Finley will have to go to my mom. If he doesn’t get shipped soon it will be too hot for it to be safe to ship him. I have no doubt my mom will do a great job of caring for him, but I hate so much to be parted from ...

Thank you so much for all of the folks who have helped fundraise for me to make this move possible. With your help, and my family chipping in as well, this is going to be possible. I don’t know what I would have done without all of you. I am now medically cleared to move. We are through the HPS Conference. I have a moving company lined up (unless I decide to go with a plan B) and about half of my things are packed now. I’m scheduling the Salvation Army to come and get the last of the furniture I don’t plan to move including: a couch in very, very, very bad shape, two small bookshelves, a drafting table, a large (and very heavy) desk and probably two bags of other smaller things. The hold up right now is just finding the apartment. We have several leads so I’m really praying we can just line something up and get it done. If we don’t find something very soon, I may go ahead and leave for Virginia and have my mom finish the pack-out on this end. Boy is moving expensive! There’s the increa...