Say Hello to My Little Friend...

Hey! Would you lookie here. My very first durable medical equipment. It even has a handy cigarette lighter adapter for use on the go (???? really?) along with the more traditional wall plug. It also has a handy reminder of when I should change the doodad.

It's all fine and good... except I got zero training with it. Nothing. I did get an instruction sheet for how to clean it, so I guess I should be grateful for that? Sigh... It's always something. I had to track this sucker down for 2 days trying to make sure I had proper authorization or whatever I needed... and now I get to figure out how to use the darn thing.

65 Roses

No, I don't have Cystic Fibrosis. But! I do get to pretend like I have it and do their airway clearance method with hypertonic saline!

Ok, I'm not necessarily thrilled with adding a 30 minute breathing routine to my day, and I can't exactly say that I'm hopeful at this point. Frankly, I'm not. I feel kind of dejected and hopeless about owning a piece of DURABLE MEDICAL EQUIPMENT. There are reasons I am not on sub-q, and not having medical crap around is one of them. I have to figure out how to maintain sanity while feeling like a "patient" every day.

So we will just focus on the positive aspects of what is going on, leaving my mental health state out of it for the time being. I will sort that out eventually.... BUT! The good news is that this doctor is both aggressive and conservative in very smart ways. We're waiting out the bronchoscopy for another 2 weeks to see if this regimen helps my lungs clear the ball of junk. She thinks it is just mucus at this point, rather than a fungal ball. Also, the extent of the bronchiectasis is limited to the part of my lung where I feel it. That is both disturbing and oddly reassuring. I was hoping that getting rid of the mucus plug would help my lung feel better... but who knows now?

The hypertonic saline is described pretty well by the Cystic Fibrosis Foundation here. Maybe it won't be totally unpleasant or will help me unwind. I kind of doubt it, but I have to do it anyway.

The B Word

Sorry I've been bad about updating. There has been a lot going on that has taken a great deal of my brain space.

It's been a rough six weeks since I returned from vacation. My breathing never returned to normal and I feel really run down. At my March infusion, I discussed this with the doctor and we agreed that I should have a high-res CT scan. That scan turned up some reasons for my feeling crummy that I was not even slightly prepared for...

I have the first spots of bronchiectasis in my lungs. That's the B word. The word which scares me more than I can fully express. I know many people who have it and, just from seeing them, I have an idea of where this leads. The saddest part is that my infections have been well-controlled and reduced by proper IG replacement, so there's not any reason I should be getting this. I should be fine. My lungs should not be getting damaged. Yet, here we are. Why? Who knows!?!?! My doctors certainly haven't shared anything enlightening.

Now I must go to a pulmonologist to get further evaluation, to include investigating the "opacity" in my lung... aka what could be a fungal ball. I've had fungus and yuck in there before, and I've had a bronchoscopy before, but this time I'm really frightened and tempted to just ignore it as long as possible. As it turns out, the medical establishment is with me on that. I called to try to get a doctor's appointment with the pulmonology group I (and my PCP and my rheum) think is most qualified to treat me. I had a particular doctor in mind, so I called. They didn't want to get me in until May 1, and not with the doctor I wanted to see....

Enter my beloved primary medical group. She talked to them and let them know my situation... They will be calling to schedule me ASAP. I feel much better since she seems to be taking me seriously and doing her best to help me as she can.

The immunologist, on the other hand, is making me feel like I'm crazy right now. I know that's not the intent, but that's the result. Telling me that I just "didn't get along" with the last pulmonologist makes me realize that he really wasn't paying attention when I told him what happened and when I cried in his office. I definitely will not be using his recommendation of another "nice guy" pulmonologist. Especially since my primary cautioned me against using that doctor specifically and the rheumatologist cautioned me against his practice generally.

I hope to get in some time in the next week or two so I can find out what is going on and get whatever testing needs to be done. I just want to feel better.

The American Dream

I've been thinking about a lot of future-related things lately. Having friends who are struggling to find their path along with news about the economy and coming sequester is making me somewhat introspective.

What would happen to me if I were furloughed? Not a pretty picture or a thought I really want to have. It could happen to me, though, depending on how the cuts go. Do I find it likely? No. Is it still on my mind occasionally? Absolutely. We work on many federal contracts and I support them. I believe I would be paid out of our reserve funds before I would be furloughed, but there has been no clear pronouncement of that fact. I just have to trust that they'll do the right thing.

Losing that large a chunk of my income would not completely ruin my finances, but it would leave me less able to pay my bills. I already know I would have to cancel services and cut back majorly... probably eat a lot of rice and beans... and it would not be fun. I feel for those people who haven't been as fortunate as I or those who are just starting their careers and face this issue. It's not fun to live paycheck to paycheck and even less fun to lose even a small bit of a check, or to have it delayed.

My own start in the professional world was rough. I did not make enough money to make ends meet or to pay for my medical stuff. It's hard to be healthy when all you can afford is $1 or less per meal because you're paying for so much that you can't help and you can't control.

I keep hearing people talk about the American Dream and how it is the dream that your children will be better off than you are, able to do the things you weren't. I feel very often that my parents' dreams for us have been stunted by the choices of their contemporaries. I don't have the money or the energy to further my education. I would perhaps have the energy if I was able to quit work and just focus on school. I can't. I will never own a home unless I somehow fall into some financial windfall or someone just gives me a house that is near the medical care I need. It's a catch 22. I can't afford (really) to live in a city, but I must not only live in a city but in particular cities to be able to access the care I need. Not to mention having to live here to get good enough health insurance through my employer.

Is this really what we want for ourselves and our future? I'm trying to be a productive member of society, but I have trouble keeping my head above water because my life moves from crisis to crisis because of illness. I'm finally feeling stabilized now and looking at the havoc my various issues (not just health but things like unemployment) have caused and it's frightening to know that I'm one of the lucky ones that are better off. Yikes.

Sad and Scary

The past week has been extremely busy for me at work and have been eventful in the PIDD community in the most unfortunate way. I found out that a couple of very different patients passed away. It weighs heavy on my heart in many ways.

The first was a man named Mark. He was a CVID patient like me... and he was doing very well. So well, in fact, that there was no issue with him getting an outpatient surgery. He had the procedure and developed meningitis. This was a well-controlled patient on adequate replacement. That's part of what makes it so scary for me. He died because of a "routine" procedure.

The second was a 12 year old boy named JP. JP actually had an immune deficiency that is considered by some to be less severe than mine. JP also had other complications and issues that he was constantly fighting. It's so scary because his pneumonia started out much the same way my first big sickness did. He was fine and then, suddenly, he wasn't. I am just so struck by how much his family must be hurting right now. I can't imagine losing a child, a sibling... It's got to be amazingly difficult.

Situations like this give me a big case of the "What Ifs." What if I hadn't gotten better? What if my family doctor hadn't been on top of things when I was in middle school? What if I had gotten meningitis after one of my many outpatient procedures? What if my family had to make the decision to remove life support? What if? I am both jarred by these stories and thankful that I'm still here.

Dear Mister President

President Obama,

Let me start out by saying congratulations on winning a second term. I voted for you both times because of your promise kept on trying to reform the debacle that is the US health care system. It wasn't everything I had hoped it could be, but you did something that many presidents had tried and failed to do, so kudos. Thank you for being so dedicated to making real strides in universal access to care. It's super important.

I'm writing to you to say how disappointed I am. The law does not go far enough. It does not set up a system by which we can buy into the federal health care system. It does not offer adequate improvement to Medicaid, and does too much for Medicare recipients. I'm sure I'm one of the few that would say that, but there are many Medicare recipients who can receive, frankly, way too much care. Care that they don't need. My friends on Medicaid, however, can't access the medications they desperately need that their doctors have prescribed. Breathing medications, medications for GI problems. It is ridiculous that disabled people who are often in most need of competent care are the least likely to be able to access it. That's a huge problem.

Also, this does not solve the issue of qualified medical professionals. Why is there a primary care shortage in this country? I think it's tied to the lack of medical schools, the need for tort reform, and the expense of medical education. Often, the poorest medical students go into the primary care field because they have experienced the real need first hand, but perhaps more middle class students would go that way if it felt in some way manageable. These doctors experience huge demands and little reward for their time. There's no real "doctor paycheck" for them. They work long hours in hopes of being reimbursed a pittance for what they've done. That's why the specialty fields are so packed. You get to have banker's hours, with interesting patients that don't call you at all hours. How nice!

When patients can't get in to see their primary doctors, they rely on urgent care and emergency rooms. Is that really the system we want to build? See your primary doctor for your yearly physical, but when you actually get sick, go see a stranger doctor that has no idea what your history is like. One that does not know you. I understand the purpose of urgent care and the need for emergency medicine, but I think the ER doctors I've met would rather treat real emergencies, rather than patients who waited too long to see their family doctors when they had pneumonia... because they couldn't get an appointment. Ridiculous.

I know you can't fix all of these things, but I would like to see some additions to the ACA that could touch on at least a few of them. Or start making movements in those directions. I know you've got other things to focus on, and I know getting Congress to do anything is impossible, but I really wish we could do something about all these things together.

All the Best,

LRM

A Broken Canvas

As often happens, I was contemplating life this morning while in the shower. Many times I come up with nothing more earth shattering than an idea for what to make for dinner. Sometimes, though, my brain gets to the nitty gritty thinking tasks that are easy to avoid.

Why am I sick? Why do I have this life? What if I was dunked in the waters of the Jordan? Why wouldn't that cure me?

For good and numerous reasons, theodicy and the concept that faith is not a shield remains a troubling issue for many people. But for me, it's not about the failure of God to create miracles in my life. It's the triumph of God's love over this imperfect mortal coil.

It's as though God has decided to paint my life across a broken canvas. It has holes, it's not ideal, but, thanks to the other blessings in my life, it's beautiful. Each of our canvases has imperfections. Even the most beautiful and wonderful lives are marred by pain of their own kind. Just because it isn't visible or obvious doesn't mean it's not there.

My dysfunctional body has shaped me into a person that I have begun to love. It's not easy to live here, in this time/place/situation, but I am thankful that I'm here. A hundred years ago, or even more recently, I would have died far before this point. God put me in this time, this place, and in this body. There is a lot to be grateful for, even if my canvas is full of gouges, holes, and blemishes. It's my own beautiful painting.