(Previous Pulmonary posts are listed at Previous Pulmonary/ILD Posts or just click the PULMONARY/ILD button in the link bar)
(A quick note: I tried to keep the tone light but I had trouble doing that, despite rewriting this numerous times. I’ve tried to keep the paragraphs short and segment the portions with line breaks to allow you to more easily read, and hopefully enjoy, these ramblings. Oh, and I left you a couple of my favorite musical treats at the end to leave you dancing.)
The” before” picture is my old oxygen buddy, a shoulder slung oxygen tank that I have been wearing since April of 2010. Like Robin, Tonto, Boo Boo, and others, it has been a faithful companion. But, it has been replaced by the “after” picture (well, not the picture but an actual physical thingee), the Invacare XPO2 portable oxygen concentrator. As this blog post meanders forward, this simple switchout of units will hopefully parallel what the last three months have meant to and done for me. At the very least, it will allow me to center my thoughts.
The “four months” I refer to in the title of this blog post are the months from August thru November 2012, a period of time that has been a busy and eventful for the rest of you as it has been for myself, in its own way. These four months are a milestone in my progress. These four months are pure me and where the “me” is going.
August marked the end of my 3rd year of being officially disabled by my interstitial lung disease, even though I’ve had it for an indeterminate time longer. We still cannot pinpoint how or why this developed, other than postulate that it happened as a result of some dust substance inhaled somewhere while working. In any case, for my sanity, that really doesn’t matter anymore. What mattered in August was that, for the first time since I have contracted this, my life would change in another profound way.
I had to figure out Medicare…
…At age 56. What I had always seen as the( still ) prime of my life. That alone has been enough to dwell on, but then I reached the distinct pleasure of choosing a Medicare plan or plans, which is kind of like choosing from a large buffet menu when you would rather not have to eat there.
I automatically received Medicare Part A because of all the taxes paid over my 37 years of working. That is essentially the free appetizer, good stuff but hardly filling the plate. If I wanted more coverage, I would have to belly up to the main steam table, where Medicare Part B was on the menu. Part B adds $99 (and soon more) to the bill, giving you more meat but still leaving the plate a bit empty.
That’s where the fun begins. You know get to choose from two buffet lines, one that leads you to a table of HMO’s and PPO’s and other alphabet soup plans. The other contains the vaguely “denture cream” sounding MEDIGAP.
The HMO table is the one most people are familiar with if they have had health insurance in the past. Essentially, the meal here has a price, but utilizing the items come with a surcharge (co-pay) for each item. Plus you have to ask the chef for permission. In advance. And there is no ordering off of the menu. The HMO plans also come with drug coverage, or the vegetables that are good for you, but these also come with a surcharge and are pre-selected for your amusement , er, ah, health.
The MEDIGAP table, on the face of it, simply seems to say belly up, take what you want, except it doesn’t. Even before you enter the line, you have to pick from Plans A thru what seems to be infinity. Each plan adds some more to your plate in varying proportions, with the best for me being Plan “F”. The advantages of these plans means that you don’t have to ask permission, most surcharges are covered, and the only limits to your choices are if the particular food station that you want to eat at accepts Medicare which most do.
However, MEDIGAP doesn’t include dessert, or the prescription drug plan. Therefore, you need to choose that wonderfully confusing and potentially costly “Prescription Plan D”. I had over 40 plans that I could choose from, each with different cost structures, co-pays, and rules for whether you pay for your food in advance or when you finish your meal. The biggest concern with Part D is anticipating whether your future drug needs will be covered, since these work off of a formulary of drugs, both generic and branded, that may or may not be allowed, or with a large co-pay.
Keeping with the food theme, it even includes a “doughnut hole” which is the space between approximately $2900 and $4900 cost of prescriptions where you might have to pay for ALL your drugs out of pocket. Think about that on a fixed income. Then tell me health care reform was not needed.
The true advantage is that under the ACA, pre-existing conditions cannot be denied for coverage, which can be devastating, especially is someone is forced out of work and needs to find a new plan.
BTW, for those who think Medicare is free, add up the total costs of just the coverage (no co-pays or fees) and I am $390 out of pocket for coverage, not including the Medicare taxes that I paid all my working life. And for those who think Medicare is something that can be trimmed without hurting those who are most vulnerable, you need to think again.
That long winded and oddly written allegory leads to my oxygen buddy. Now that I have the Medicare coverage, I was able to get approved for a portable oxygen concentrator. This for me is a godsend. Simply put, the need to carry an ugly but essential oxygen tank while being out and about just about killed my desire to go out unless it was essential.
You need to sling an awkwardly balanced metal tank over your shoulder while maybe dragging a second one along for longer activity. You need to always think ahead to make sure you re-order oxygen and then make sure that you can be there when it is delivered. You have to cringe when the tank bangs a wall or a door jam because it is slipping on your shoulder. And yes, you still get the furtive stares of people who don’t want you to notice that they noticed that you have a hose in your nose.
Essentially, you make excuse to yourself to justify not accepting an invitation to head out to a show, a game, a store, or just to hang with friend. I did go out twice, to an IN THE POCKET show at the Blockley and to an invite only even from Klout and Barclay Mastercard at the Philadelphia Eagles Novacare Complex. And no, I am not a jinx, despite the fact that the Eagles won only one game since I went there.
SHUGGIE is my new portable oxygen concentrator. Yeah, I named it. It is named after SHUGGIE OTIS, one of the best guitarists I have ever heard. I named it SHUGGIE because it is now allowing me to hopefully experience my life music with renewed energy and interest. While it still slings over my shoulder and I still have a hose in my nose, it is amazing what it does for me mentally. I no longer feel “industrial” when I am out with my oxygen source. It fits more comfortably on my shoulder, despite a weight of 7.3 pounds. I can get about 4 to 4.5 hours out of the two batteries before a recharge. Yes, I’ve moved from tank management to power management, but I’ve always thought about power management so it is inherently easier to work with.
SHUGGIE makes a noise, a hum when it is running plus the gentle “pfft” of the pulse dose of oxygen being delivered. On my shoulder, I tend to hear it as louder because it lays against my upper hip and I feel the vibrations on my side , which tends to amplify the sound a bit. I also have to get used to hearing it reflected off of wall I pass or in an elevator. And it looks much cooler and “Star Trek-y” than the gas tanks.
I used it to go see the wonderful play WAR HORSE at the Academy Of Music, thanks to tickets supplied by The Arts in Philadelphia twitter feed. You really should follow them at @TheArtsInPhilly for great info and giveaways about the arts and entertainment scene in and around Philly. WAR HORSE was amazing and despite it being the first time out in a crowd with SHUGGIE, I didn’t feel quite that awkward. I still need to learn more about it and get more comfortable with it, and realize that it still have definite limitations, but like Joey, the “War Horse”, I was tasting a freedom that I hadn’t had for a while, either physically or mentally.
September was a bit of a down time for me, since it marked the three year anniversary of the last day that I worked. I miss the video business more today than ever and it was tough to come back to reality that it isn’t me anymore. That feeling carried over to my interactions in real life and in social media. I’ve always been a promoter, I love to talk with people about projects I am passionate about and help friends promote their efforts.
However, the farther removed from what I used to love to do, and did so well, the more I felt like I just couldn’t help anymore like I used to. I like to see results, I like to see progress, but as I tweeted or talked, in the back of my mind, I started to doubt myself. I still kind of do. I know what I know and am proud of it, I just need to regain confidence in my ability to effectively deliver results to those I respect and admire.
Of course, the Phillies, Flyers, and Eagles were huge disappointments, so there went that distraction. The election kept me involved, but I still crave, and hopefully always will, the chance to help someone accomplish their goals and their dreams. I love collaboration, which is why writing a blog on my own can be a bit of a struggle, since I have no one to bounce ideas off of or to offer ways to improve it.
Then came December and one of the wonderful and yet most frustrating months yet. I’ll be writing about it in the next couple of days, but here’s a hint: It involves a beautiful bride, a mouse that started it all, and my month long version of “ ‘Red’ River”.
And SHUGGIE lead the way.
Happy New Year 2013.