We are Family

Today was a very enjoyable day!  I went over to my Aunt's house to help with some baskets for the benefit. I thought only a couple of us where going over there, but when I got there it was a full house!  A bunch of my extended cousins were over there too.  There was me, five other adults, three teenagers, and four little ones.  I was surprised, but happy to see everyone.  Some of them I hadn't seen in years.  Of the four little ones, two of them I had not met yet.  So it was really nice to see everyone.  I am finding that this is my favorite part of the benefit.  I am seeing and hearing from people I haven't talked to in years.

Two is Better than One

Today marks Jason's and my 9th year anniversary.  It is crazy how time flies.  We have been through a lot.  These last couple of years have been challenging.  With me getting so sick life is not easy.  This is not something that people in their twenties should be worried about, but he is right here standing by my side.  Not only is he here to help me with things I can't do right now, he is also there to support me through all this.  He not only involves himself with my medical stuff, he knows everything about it.  He goes to the doctors' with me, he knows all their names, what they do, what meds I am on, what the meds do and how they work.  He is also on top of the drugs that are still in the research pipeline.  If there is something I am not sure of I just have to ask him.  He is my rock and the reason I wake up and fight every day.

A Cabin in the Woods

Camping was a lot of fun.  We all had a good time and needed to get away for awhile to unwind.  It was so nice to be able to catch up with my two best friends.  With the two of them going to school in different areas and me being sick, we don’t get too many opportunities where we are all able to do something together.  We didn't need to go anywhere too fancy.  All I wanted was to spend time with my three favorite people.

Home for a Rest

Well I am finally home.  We decided it didn't make sense to come home on Monday and do IV's for two days.  It would have been too much of a hassle.  I would have to get the meds delivered, pay all the medicine co-pays and then arrange for a nurse to come out to de-access the port when I was done.  So I didn't mind staying just two more days to avoid all of that.

Up All Night

It looks like I will be going home on Monday.  I could leave Friday if I want to, but I am still winded too easily.  Going home and taking care of everything myself will be too difficult at this point.  I am going to let the nurses take care of me so I can concentrate on relaxing and getting better.  My coughs are still a lot harder than they normally are.  I get stuck in them, turn red and feel like I am going to pass out.  I get light headed, the room gets spotty and my body feels shaky and tingly.  This happens to me sometimes, but right now since everything is moving, it is happening multiple times a day.  I go into coughing fits just from transferring from the bed to the wheelchair.  This is probably the worst part when I come in here, but it is a necessary evil.  All the mucus that has accumulated in my lungs is breaking free and plugging up my airways.  It makes it harder to breathe, but it makes it so that it can come out too.  Once I get most of it out, I shouldn't go into coughing fits so frequently and then hopefully start to feel a little better.  Plus I am not even bored here yet.  Believe it or not I have lots to do and have actually been busy.

In the Midnight Hour

The last couple days have been rough.  It has been harder to catch my breath even when I am just sitting on the couch.  My coughing has gotten a lot worse and I have been very congested.  I have just been taking it easy and trying to make it until Monday.  I called Lisa (she coordinates everything at the lung center) on Tuesday and told her that it was time to be admitted.  I suggested Monday so she said she would have all the paperwork ready and I could just go in.  I wanted to wait because Jason's family reunion is Saturday and I wanted to be able to go.  I have not been able to go the last two years because it just happens to fall right when I have to go in.  So I thought I would try and make this one. Well as you can see by the way I am talking in the past tense...my lungs had another idea.  Last night I started coughing up blood and Jason took me to the ER.

Proud to be an American

Hope everyone enjoyed their Fourth of July!  I personally did.  I surprisingly had a very good day yesterday.  I knew it was going to be a hot day so we came down to visit family and enjoy picnics and the fireworks.  We came very prepared.  I brought along my portable liquid oxygen and attached it to my electric wheelchair.  I also brought along my POC as a back up just in case I ran out of O2.  Luckily I ended up not needing any of it.  I got a fever half way through the day, but after I took some Motrin I felt alright.  I was comfortable for most of the day and was able to breathe.  I couldn't walk more than a couple feet without getting winded, but as long as I was in the chair I was fine.  That made for a good day and I am thankful for that.  Definitely happy I was able to enjoy the day with family.