Priceless Friendships

February 22, 2012 in Filed Under: Cystic Fibrosis, Jesse 7 Comments

Last night was my monthly get-together with the Tampa CF wives. I can’t describe how much I truly love each of these ladies. I can’t believe that we met for the first time just a few months ago, it seems like we’ve known each other forever. Each of these girls has complete understanding about what it’s like to live with ever-present CF.

I feel so re-energized after our girls’ nights out. Our dinners together are pretty much the only time I talk much about CF related aspects of our lives. I’m still getting used to the fact that we can easily go from talking about recipes and haircuts to enzymes and mucus without even thinking about it. We laughed last night thinking about what people at the tables around us must be thinking about such conversations… only a CF wife can understand.

Feb wives dinner

Last night was extra special because an out-of-town CF couple that we’re are good friends with were in town. We were so excited that it would work out for her to join us for dinner. We first started following Jim and Denise about two years ago when Jim was preparing for his lung transplant. Then last year we had the pleasure of meeting Denise, but Jim was unable to travel at that time. So we’ve really been looking forward to getting to meet Jim this year.

Jesse and I sat down with the two of them for a while before dinner. They are an amazing couple! They have been through so much together, yet they both have such a positive outlook on life. Jim is the first post transplant CFer that we’ve met in person. We were beyond excited to hear from him what it’s like to breathe with someone else’s lungs. We were also excited that he so proudly showed off his scars/battle wounds. (Side note: Don’t freak out… we and Jesse’s doctors believe that he is very healthy and is nowhere near thinking about a lung transplant, so that’s not why we wanted to meet them. However, it is a reality for many CFers later in life.)

After meeting Denise last year, she thought that Jim and Jesse would get along perfectly. She was so right! It was funny how similar their personalities are. After Denise and I left them to meet up with the other wives, the two of them geeked out at the Apple store before heading to their pizza dinner. Denise and I were of the same opinion that we weren’t missing out on anything by not getting to the Apple store.

It meant a WHOLE lot to Jesse to be able to talk through CF stuff with someone who has been through it all. He had such a good time with Jim and he talked our entire ride home about everything learned from talking with him. It’s very scary to think that ten years from now we could possibly be where they are now. But then… hearing and seeing how happy Jim is now lessens the fear just a little.

We were extra paranoid about keeping a distance between the two of them. With Jim’s clean, new lungs Jesse did not want to be the one to infect them. Jesse made sure to bring a mask to wear when he was in the car with Jim and even held his breath when he stood close enough for a picture. Jim laughed at Denise and me being over-protective.

Such a good time was had by all. We’re already looking forward to seeing them when the come back to Florida again next year. Thanks for taking time out of your vacation to spend with all of us!

This post was linked to Living Well Wednesdays. Check out this blog for recipes and other great homemaking ideas!

Our Wedding Ring Story

February 20, 2012 in Filed Under: Jesse, Marriage 6 Comments

Jesse told me on the night before Valentine’s day that he wanted to take me shopping in the morning for an upgraded engagement and wedding ring. I was pretty surprised because we usually don’t make too much of a deal out of Valentine’s day. Jesse said that he wanted this gift to also be an extension of our anniversary since we were traveling then and couldn’t do both at the same time.

This isn’t the first time we’ve thought about finding a replacement. Our first rings have endured some injuries. They are perfectly pretty rings from Marks & Morgan Jewelers. However, the entire setting on my engagement ring happened to break off a couple of years ago. It happened while I was driving and I have no idea what I did to it. I called Jesse as soon as I noticed it and asked him to start searching everywhere around the house for it. Then when I got to work I realized it was on the seat in the car. We’ve since had it repaired, but it doesn’t quite look the same. Jesse’s ring is missing one of the inset diamonds on his wedding band. We plan to replace his at some point too. He felt like he really wanted to buy me a ring that he felt proud of.

Hands with rings

Honestly, as much fun as that sounded, my first reaction was that we probably didn’t need to spend money on something like that right now. Then he sat me down and told me how much he had been thinking and planning for this and how much it would mean to him to be able to buy me something nice like this. He reasoned that he almost never gets to take me out for dinners anymore, and we’ve never been much for big, fancy vacations. He even went through a couple of options that he had found online that he thought I might like… he really had been thinking ahead on this!

My second thought, after being fairly persuaded by his argument, was that I truly did have an attachment to my current ring. After all that’s the ring he actually proposed with and the band he actually put on my finger at our wedding. I know it is a relatively inexpensive ring, but it was a big sacrifice for his budget at the time when he bought it for me. Those rings have a huge sentimental value to them. I really got sad to think that I wouldn’t be wearing it anymore.

After giving it some thought, we decided to at least do some shopping to see if I found anything I was interested in. We didn’t have to look for too long in the first store to find one that I LOVED (and happened to be in our budget). We decided that we might as well look at the other jewelry store choices since the stores were right there. The second store had nothing that jumped out at me. The third store had several that could have been possibilities, one in particular that that was very unique… but even as I was wearing it I couldn’t stop thinking about the first ring. We then left the mall and went home for lunch and for Jesse to take a couple of business calls.

By then I was sure that the first ring at Kay Jewelers was the one I wanted. It was perfectly “me.” Jesse had to re-convince me a couple times on the way back to the mall that he really did want to spend money buying me something so special. I really do love thrift store shopping now and I’ve become so used to that pricing that it’s harder for me to spend normal amounts of money anymore. So you can imagine how exciting this purchase was!

I just absolutely LOVE it! I love that it’s similar in style to my first ring. Jesse really wanted something that had a grouping of five diamonds in it somewhere for our fifth year of marriage. This one does, five small diamonds on either side of the engagement ring. I love that the wedding band fits around both side of the engagement ring. Jesse was overjoyed to buy the ring for me. Plus, he even managed to get a discount off the entire set! I can’t wait until it’s back from getting re-sized to that I can stare at it all day.

Thank you SO much for my new ring, Jesse! I love it and I love you!!

This post was linked to Homestead Barn Hop, Titus 2sdays, Teach Me Tuesdays, Domestically Divine Tuesdays, and Living Well Wednesdays. Check out these great blogs for recipes and other great homemaking ideas!

The Brighter Side

February 17, 2012 in Filed Under: Cystic Fibrosis, Jesse 8 Comments

What a difference twenty four hours can make in a bleak situation. I feel like a huge portion of the insurance burden has been lifted off of our shoulders. Of course, we still have a very long way to go until this gets resolved, but at least it feels like we are getting somewhere.

Sunshine

Our call to Aetna did not go as we planned. Actually it did not go at all… we tried calling the person we were dealing with and she is not answering or returning our call. This is not surprising because it’s what every other level of Aetna representatives that we have talked to has done to us. That’s fine… it’s most likely useless to talk to her anyways.

Instead a friend suggested that we contact the state insurance regulators. Bingo! This guy listened carefully to Jesse as he explained the story and immediately picked up on a few laws that seem to have been broken. He says that we should have been given at least ninety days notice that the plan was going to be terminated. We were given just over a week’s notice. He also said that we should have been sent a new benefits package and that we should have been able to choose which new plan we wanted to elect. Neither of these happened. We have requested a package be sent several times and still have not received one.

As you can imagine, we are in a very scary situation not being able to tell exactly what our coverage is right now. Since Aetna is still claiming that everything is the same as the old plan, Jesse poured through the old plan to pull out any extra information that might be useful in the case. I went through every single piece of paper in our health folder for the last few years to make sure that we had not overlooked something that they had sent us. We have always kept everything Aetna sends. We have always been on high alert whenever we get correspondence from them because we have always known that it would be of significant benefit to Aetna to eliminate such an expensive member. Jesse’s insurance premium is always the first bill we pay each month so as to make sure it has plenty of time to clear bank so that they never find a reason to drop him.

Now we have to wait up to twenty days for them to make a response. At this point our case isn’t about the specific medications that are no longer being covered at normal copay amounts. It’s about our plan illegally being dropped without notice and not receiving any information on the new plan. I really don’t see any way that Aetna can fight that argument. We have documented proof of the day we received notice and we are on record with every call we have made to them having requested the benefits package. So we will see…

I will say that we may have fantasized a little about what the outcomes of the case could be. We have no idea if this could end in some huge settlement or if they will just be required to give us the old plan back. Maybe we’ll get free health insurance for life or a guarantee that every drug a doctor ever prescribes for Jesse has to be covered without question. Maybe all of the above!

For now we are just going to try to stop thinking about it for a while. The stress of this week is definitely taking a toll on Jesse. Many CFers say that they can feel the stress in their lungs. I can’t relate to how that would happen, but I do that I am physically exhausted from the almost constant state of adrenalin I’ve been running on this week. We need to rest and take it easy over the weekend. Clinic has offered a supply of the medications in question so that Jesse can continue to take them while the case is in progress. We appreciate continued prayers that this will work out in our favor and that Jesse will be, once again, granted access to these critical medications.