Living on the frontlines

This past weekend I was listening to NPR, as I usually do in the mornings. I was half awake, only partly understanding what I heard as I cuddled with Fin and slowly woke up. Scott Simon of Weekend Edition was interviewing the author of Imagine Me Gone, a novel with a theme related to the anxiety experienced by characters. The book is by Adam Haslett. Admittedly, I am not familiar with the book, or the author. Simon read an excerpt from the book as I rolled over to try to fall back asleep. Then, I heard a line that struck me between the eyes. It struck me so strongly that I had to get out of bed and go find paper to write it down so I wouldn’t forget it. Honestly, I can’t even remember what the excerpt was about. It was just this single line that seems to have penetrated my ears. “Anxiety is the relentless need to escape a moment that never ends.” Is it a definition of anxiety? I admit, I tend to lean a bit on the anxious side. It has never been a severe issue, as it is for so man...

I promised all the people who have helped me raise money for my lung transplant process that I’d keep you updated on this blog, and I’ve done a lousy job of it! Please forgive me. The thing is I just don’t have the energy I once did. I haven’t had the energy of a “regular person” for some time, but these days it is worse. I plug away at my day and then suddenly, as if hitting a brick wall, I’m done. There is so much to do, that updating the blog isn’t always first on the list. So, here is where we are on the great move! Medically, I am all ready to go. Whew! That has gone very smoothly so I am greatly relieved that we didn’t have any issues there. Last week and this week I have been getting estimates from moving companies on moving my things. I’ve sent several loads of things to charity, and have some more things to send as we get closer. I’m not moving a large desk, for example, but wanted to use it until closer to time to go. If anyone has any advice on bids from nationwide movers, I...

I’ve had friends with Hermansky-Pudlak Syndrome, or other lung diseases, for 14 years now. Over the years friends that found themselves on oxygen have told me stories about overhearing comments in public, or even from other friends, about them. The comments were along the lines of - they’re on oxygen because they were a smoker. Recently, it happened to me, not once but twice, in the same week. I’m not sure how to feel about it. The first time was at the grocery store. I was standing in line, and a mother said to her 12ish looking daughter, “See that lady. That’s what happens if you smoke.” A week later I was in the car with friends complaining about my latest saga with the oxygen company. One of the friends remarked, “I’m glad I’m not a smoker.” They are two very different comments with lots of different implications. The fact is, however, when many people see someone on oxygen, they often assume it is “their fault.” Living with chronic or life limiting illness is a minefield of guilt ...

I mentioned a few days ago that when I had a few moments, I would blog about my life on hold. People who have never encountered long-term health issues have no understanding or appreciation of just how much work it takes to deal with “medical stuff.” I estimate this week alone I’ve spent seven hours on hold with medical supply companies, insurance, doctors’ offices and pharmacies. This is not unusual. In fact, it is a pretty average week. Some weeks it takes more time than this. It also does not include the time I was at a medical appointment on Tuesday. This is just time on hold on the phone! If what you need can’t be bought at CVS or Walgreens, it can get complicated. Currently I have three pharmacies and two medical supply companies in my world. It often feels as though none of them have ever heard the term, customer service. My oxygen supply company is the worst in this regard. If they weren’t bad enough, they don’t have hold music for that 40 plus minutes or more you’re on hold wa...

Yesterday I posted some short video clips on facebook of Finley helping me find the telephone. I spend more energy hunting for my phone! It blends in so easily because it's a dark color. If I call it to find it, I don't always find it before it has switched over to the machine. Finley can't bring me the phone because it is too big for him to get his mouth around, but perhaps I'll find a way to overcome that. In the meantime, I've just been teaching him what the word "phone" is by using a handset that has died and putting it in his toy basket with all of his other treasures. I'm a proud mama, but he learned this trick quickly. Granted, he gets it right more often when we are doing obedience training and he knows I have treats in my pocket, but he's getting better at finding it the rest of the time too. I have to remember, however, that if I am not going to get up to put the phone back on it's cradle, that I must leave it low enough for him to...

For the past year I haven’t blogged about probably one of the most important events in my life. I’ve wanted to hundreds of times, but I’m so emotional about it that every time I start to tell the story, I get teary. Since today is the first anniversary since his adoption, I am determined to get through writing this post! Little in life has turned out the way I wanted it, or how I thought it would be, or how I planned things. Hermansky-Pudlak Syndrome affects different people differently. Some have little problems their entire lives, while others are profoundly affected throughout their lives. Chronic illness can impact every part of your life. It can affect personal relationships, comes with great financial costs and can radically alter life goals. Simple things I assumed I’d experience in life such as getting married and having children, having a career, owning a home or having even modest financial security have all been altered or influenced by chronic health issues throughout my ...

Third load of stuff given to charity as I work on my move to Virginia.  Stuff I sent with mom to store.  Even though my move to Virginia had to be moved back, I’m still very actively working on getting ready to move. Part of me is a little glad for the delay as it gives me time I really need to get ready. When I thought I was moving in July, the anxiety about how to get organized in time was getting a bit much!!! This past week my mom has been visiting me from Colorado. While I have given away three loads of things to various charities, I do have some things that are sentimental enough to me I hate to get rid of them, even though they are not exactly practical for living in a smaller place in Virginia. I’ve spent the past few weeks packing things like the nested tea pot Peter gave me when I visited Hong Kong years ago. It is one of those items that just sits on a shelf and looks pretty. Since I won’t have an office when I move, I need the shelf space for more practic...

One of the sweetest questions I get asked these days is, “How can I pray for you?” Thank you so much for all of the many, many prayers. Please keep them coming. This journey will likely be years, not months. It’s more of a marathon than a sprint. It will have lots of ups and downs along the way, and I’ll need all the support I can get. I am surprised by how much things like little comments on facebook mean when you’re really in a dark place. On the whole, I think I’m doing a good job of keeping my spirits up, but that isn’t to say that there aren’t days that are just, well, crappy. On those days it’s the support of all of you that help to keep me focused on moving forward and trying not to dwell on the losses. There is a lot going on that could use prayer right now. Please pray for my family. This is a stressful time for them as well as for me. Not knowing exactly when I’ll be moving and when our plans need to be put into action turns my stomach. I know it isn’t easy on Ryan and Sara a...

Some of the crowd at the fundraiser Homers Coffeehouse held for me. I want to once again thank all of the people who have pitched in to help make my upcoming move to Virginia possible so that I might try for a lung transplant. I might not be a child, but it truly takes a village to make lung transplants happen. That’s why transplant centers evaluate your support system as part of the decision to list you for a lung. They want to know if you will have the physical, financial and emotional support to help deal with the roller coaster process of getting, and then maintaining, transplanted lungs. Not only have the fundraiser and the donations helped financially, but they will help demonstrate to the transplant team that I do have a LOT of people out there rooting for me. So, here’s a big THANK YOU again!

This year our HPS team at the American Thoracic Society attended an awesome patient program about the common issues faced by all patients with lung disease, no matter what it is. I loved the approach and found several of the presentations really great. It also gave us some ideas that we hope to bring to the HPS Conference session line up, provided we can find a speaker to deal with them. Rather than explain the sessions, I"ll just send you to the story I wrote for the HPS Network website: - https://www.hpsnetwork.org/en/news/2014-06-25/hpsers-attend-living-your-best-life-with-lung-disease-at-the-american-thoracic

I am usually a pretty even keel sort of person. I don’t have a lot of rapid mood swings or have extremes. Since learning I need a lung transplant and have to leave my community here, however, I’ve discovered this battle is as much emotional as it is physical. Sometimes lately it’s been an hour by hour fight. Sometimes I feel very confident that everything is going to be okay. This process will require not just one miracle – getting new lungs – but lots of little miracles along the way. So far, it is as if all those little miracles are just falling into place one after the other. It feels like no matter how long the odds, somehow everything will work itself out and be okay. Other times I feel very overwhelmed, sad and panicked. I have a lot of fears about what’s ahead, and at times, they seem to take over. There have been a few days where I literally felt sick to my stomach and had headaches that I think could very likely be attributed to anxiety. It is possible that a two-hour MRI is i...

A week ago today my neighborhood haunt, Homers, organized a benefit concert to help with the unexpected expenses surrounding trying to get a lung transplant. Words will never be able to express how grateful I am to them for taking on this project! They did an awesome job! A number of different musicians played and some of the baristas that are artists donated art for a silent auction. They raised more than $1,800 to help with expenses. The generosity was overwhelming. I am so blessed. I am blesses to have so many great friends and people willing to pull out all the stops to help me. The event was almost like a going away party. I saw friends from the neighborhood, friends from work and friends from Camp Fire where I volunteered years ago. It was such a great experience to see friends from so many different parts of my life all together. The music and artwork were awesome. Honestly, I felt like crying much of the evening but I managed not to do it. I was afraid that if I did, I’d lose i...

There is a LOT to do to prepare to move to Virginia. Thankfully, I’ve had a lot of help getting information, apartment hunting etc. from Ryan (my brother) and Sara (my sister-in-law). For the next two weeks, the move planning is on hold. I’m still working on issues that have to be resolved for the move, but I put the apartment on the back burner for now. I can’t get into specifics, but the medical strategy might be changing a bit and it might be October until I can move. It might not, and I can move sooner. The thing is I won’t know the answer to some of these medical issues up in the air for at least two weeks. The emotional part of me is a little grateful for the minor reprieve. I’m trying very hard to not get too emotional about things. I try very hard to just focus on what has to be done because it just has to be done. Still, these past few weeks I’ve been so tense and under so much emotional stress. Every little thing I do to get to Virginia seems hard because it’s something I’m d...

My recent trip to the American Thoracic Society (ATS) was the first time I’d ever traveled with oxygen. This oxygen world is a whole new wilderness for me. I sometimes wonder if my frustrations and complaints sound silly to those who have been at this longer and have already figured it all out. I didn’t know I’d need oxygen soon enough for my local provider to get me a portable oxygen concentrator for the trip. I’m not really sure why this is. You’d think they’d keep a few around as it doesn’t seem like that much of an unusual request. But, rules are rules. So, I ended up having to rent a portable oxygen concentrator for the trip. The problem is I need continuous oxygen at night. I “bleed” the oxygen into my CPAP machine at night. Turns out this makes the whole process more complicated. Instead of the nice, light, looks-like-a-purse concentrator, I got the very heavy (uses the word portable loosely) concentrator. It came on a “cart” like a luggage cart people used to use before everyon...

Getting put on oxygen is one of those milestones in living with HPS that tends to be a rite of passage – and not in a good way. It’s the tangible signal that this thing you’ve been dreading happening one day has arrived. It’s like using a cane for a blind person. When you’ve got tubing on your face and air squirting in your nose, you can’t deny what’s happening. The people around you suddenly get that what is happening is serious (even if you’ve been telling them this for years and living with declining lung function). It’s just so viable! A few weeks ago when my PCP wrote a script for oxygen if I went to visit my mom, I was really shaken. This time the news that I had to move to be closer to a lung transplant center was such a big blow that the oxygen just didn’t seem as big a deal. Sometimes HPSers really resist the oxygen. I understand why. Not only is it this constant reminder of what is wrong with you; it’s also a big lifestyle adjustment. I’ve started calling it “life on the ...

Carmen has been a dear HPS friend of mine for many, many years now. She is really doing great things for HPS and HPSers in New England. I'd urge you to get involved! I'm posting the Network news story. It also includes the speech Carmen gave where she shares her HPS story.  Read here:  

One of the things I think people look forward to most about the HPS Network Conference is finally meeting someone else who has walked in their shoes. 

I know HPSers like me are often looking for ways to earn a little extra money. For many of us, freelancing might not make us rich, but it fits our medical lives better. I had never thought of this as a possible income opportunity. If I lived in New York, I'd go. Generally, those of us with HPS are legally blind, but most of us see well enough to see the action on TV or the movies if the screen is large enough.  Audio Description Training in the Big Apple! Audio Description Associates, LLC and the American Foundation for the Blind announce AUDIO DESCRIPTION TRAINING February 26-28, 2014 In Conjunction with AFB's 2014 Leadership Institute at the New York Marriott at the Brooklyn Bridge - Brooklyn, NY Audio Description (AD) makes visual images accessible for people who are blind or have low vision.  Using words that are succinct, vivid, and imaginative, media describers convey the visual image from television and film that is not fully accessible to a si...

I've been trying to order ostomy supplies today. How long can a human be on hold? I think I'm going to find out. I saw this pic on the Net....wish I knew where it came from to give credit where credit is due. It's a great representation of how I think of ostomy supplies - like crapping on money and flushing it (only you don't flush supplies - you throw them away.) 

I think we in the Hermansky-Pudlak Syndrome community understand the gift of life better than most. We wait with anxiety and anticipation with our friends in need of new lungs. We pray that some family out there somewhere will have the heart and the strength to make a gift of their loved ones lungs when they are in such pain and grief themselves.  As HPSers, we can give as well as receive. We have it in our power to give the gift of life and hope to our HPS friends for years to come. For us, the gift might not be as straight forward, but it is as precious all the same. We can give the gift of tissue for research. We can do this in lots of ways. If you have a planned surgery or biopsy, contact the HPS Network and let us know. This way, we can consult with the researchers to determine whether what you’re having removed or sampled could have some value to our research. For example, last year an HPSer having an overy removed let us know. We didn’t think it would be of interest to resea...