End of Vacation

Living with a chronic illness is taxing both physically and emotionally. While some people may recognize the physical tolls it takes on your body, few realize the emotional toll it takes as well.Just keeping up with the myriad of medications taken daily to stay alive and maintain some state of health can be exhausting. But then you have to add the endless stream of doctors' visits, specialists and consults, and medical procedures and tests. Every day brings another fight with the insurance company, doctors, and home health care agency to get the treatment you need just to live. When you think it is done, you then look at the pile of ever mounting medical bills, that which insurance didn't pay for. You do all of this day-in and day-out, fighting for your life - literally. Besides the physical exhaustion it brings, it wears on you emotionally. The idea of these never ending tasks are daunting. You become overwhelmed to the point that you just can't do anything.

This is how the past three months have been for me. As I've watched my health slip away, and though I wish it were slowly, in fact it has been more like a spiral. I felt powerless. I did everything I was told to do, took all my medications and treatments, which seemed to increase at every doctor's visit. Yet, I kept getting worse, with no end in sight. There is nothing worse than watching your health run away from you, and feeling there is not a thing you can do about it. I have spent more time in the hospital than out of it, four time in a month and a half. Each time leaving the hospital overwhelmed and depressed, feeling like things will never change and only getting worse despite all the medications and treatments. At times I felt like giving up and just not doing anything. It was knowing that I was going on vacation on August 7th that kept me going and kept me from giving up. My family and I had gone to Myrtle Beach last year, and we were going back this year. It's gorgeous there, a place where I could be at peace. I needed this vacation. To me it was more than just spending time on the beach. It was a break from all the medical appointments and illness. For that week I could just be normal. I had been looking forward to this vacation for over six months.

The Oxygen Fiasco
I began planning for the vacation overt a month before we left. We were planning to fly so I knew that the logistics of traveling with oxygen could potentially be challenging. I met with my pulmonologist, got a letter stating I was okay to fly for the airline, and got a prescription for a portable FAA approved concentrator for the plane. I arranged things with the oxygen company. Two weeks prior to leaving I called the oxygen company and set up the details. They were going to ship down a concentrator so that it would be there when we arrived. They would also give me an FAA approved portable concentrator for the flight, which I would pick up Wednesday afternoon since we were flying on Friday and I had my infusion scheduled for Thursday. I saw my pulmonologist on Tuesday to get official clearance to go since I had been so sick lately and just gotten out of the hospital two weeks prior to this. This was important because my mom was leery of me coming. Basically, I was a liability. Wednesday I went to pick up the portable concentrator at 3:00. I expected to go in, get it, and leave, but things are never that easy.

First, Jeff, the guy who needed to give me everything wasn't there, even though we had arranged the time the previous day. Pete, one of the directors of Prompt Care, my oxygen company, started making a fuss over the portable nebulizer I also needed, which had to be straightened out by the home office. Then he didn't want me to have the portable concentrator because it went up to 3 liters continuous flow, not 4. It took an hour and a half to straighten everything out, but finally I was all set up. I signed a liability waiver stating that if anything happened to me, I would not hold them accountable and was on my way. I drove off and 20 minutes later, I received a phone call from the receptions saying that they had called my pulmonologist and he hadn't okayed me to travel. She said they needed to pick up the equipment in the morning. I was devastated and confused. My doctor had cleared me medic ally to go just the day before. How could things change so drastically in less than 24 hours? I tried to call my doctor to get the real story, but he had left for the day.

So now the oxygen company wanted to take their equipment back, which if they did that there was no way I could go. In addition, I had an infusion and would not be home for them to pick it up, hence why I'd done everything on Wednesday. I didn't know what to do. Technically, I had the equipment so I could just not be there for them to pick it up and go on vacation anyway, but I didn't know what the repercussions of this would be; however, this seemed my only way to go on vacation. I certainly couldn't go without oxygen for ten days. I left early in the morning for my infusion, taking the equipment with me, hoping to buy time since they couldn't pick it up if it was with me and I wasn't home. During that time they tried to pick it up. They called me and threatened me several times, saying they had to pick up the equipment. I called my doctor in hopes of straightening things out, and he said that though he had concerns with me flying (wish he had told me that on Tuesday when he saw me), that he felt it was okay for me to go. Frustrated and desperate, I called the representative Karen, who had originally set me up with Prompt Care.

Karen is amazing. She goes above and beyond and is truly dedicated to her job, something you don't see too often. Prior to having Prompt Care as my oxygen provider I had another company. I was fed up with their service. While in the hospital, I told the social worker I was looking to find a new oxygen company. Karen happened to be in the hospital. She met with me and arranged everything so that my transition went smoothly. She was amazing and made a great impression on me. I knew if anyone could help me, she would. Once again, Karen was amazing. She talked to Dr. R (my pulmonologist) and coordinated things between him and the oxygen company. The next morning she came by and delivered a few things that I needed. The equipment they'd given me on Wednesday was having problems so she went back to the office to get me one that worked properly. She did all of this before noon since we had to leave at noon for our flight.

Packing all my meds

Meds for Carry-on Luggage

Meds to be packed




Organization is Key

The flight was definitely a challenge for my lungs. I think my flying days may be over, at least until my lungs get better. Security was hard because I couldn't go through the regular metal detectors but had to be checked and patted down separately by a security officer. I met a nice guy while waiting for the plane and had a great conversation. This meant so much to me because the oxygen and medication make me unattractive. Most guys don't even want to get in a conversation with someone like me. Yet here I was sitting in the airport with two oxygen tanks and wearing a mask, and he was genuinely interested in the things I had to say. We had a lot in common. I was so engrossed in the conversation that I almost missed our flight. My mom came up to me to say that they had already called for handicapped people to board the plane and were boarding the rows. I had not even realized the plane was at the gate. I had to get all the various chargers and equipment in the bags to go on the plane. Then when I got to the desk I didn't have my boarding pass. Somehow as I went through security I lost my boarding pass not even realizing it. Thank goodness my mom had printed off two copies.

Myrtle Beach was exactly what I needed. For some reason my lungs always do so much better in the south, especially by the beach. It was rejuvenating to sit on the beach or by the pool. All too soon it has come to a close. Now it's back to the doctors' appointment ect. Oh, how it ends too quickly, but it was a much needed break.