Just Musings

Now it is Thursday night and I think it is July the 22nd. I am amazed at how fast the time seems to go. I have a lot of thinking time- which is probably good, but I have to be careful, because I tend to get a bit weepy when I think about the very real fact that I might not live a lot longer. Most of the time, so long as I sit still or lie down, I am OK. But my dependence on oxygen is getting greater daily- now, when I remove it to clean my face or clean out my sinuses (important- tell you why in a minute), I get breathless in a very short time. I've started wearing the oxygen in the shower for part of the time. I throw it over the shower rod so it will be right there- knowing that is like a security blanket, and it seems to give me the ability to be without it long enough to wash my face & hair (if I have to do that). Then I usually put it on, because I have finally started getting a little dizzy when my O-2 saturation is low, and dizzy is something you don't want to be in the shower! I've tried taking tub baths- and I find that getting up & out of the tub is quite an effort, so I don't do that much. It is so maddening because this is SO "NOT ME". I have always been strong and physically capable- I have always done the small home repair chores that most of the time a man does, but Steve's own limitations make that an impossibility, so I would routinely get on the ladder, change light bulbs, get up in the attic, mow the yard, or get my toolkit (Bea gave me one that is called the "Do it Herself kit" because it is for women) and adjust something with my pliers or tighten screws in cabinet hardware, you name it. Now I have to ask Steve to open jars for me. It is difficult to adjust to being so limited. But it is also a time of Grace- when you hear "Let go & let God"- that is what I do on a daily basis. I pray a lot. I read the newspapers, usually 2 of them cover-to-cover every day, plus I enjoy several magazines I subscribe to, and I still have 4 or 5 hard back books that I have had for over a year and haven't read, plus there is my Nook, which is Barnes & Noble's answer to the Kindle. And invariably, no matter the time of day, I will begin reading & fall asleep! Steve worries that I don't get enough sleep, because he is aware that sometimes I don't sleep much at night- in order to allow him to, I will leave the bedroom & go to the den & get in my recliner & read. I absolutely LIVE in that recliner, and it carries a funny history. Years ago- like at least 10 or even 15, we were at a Sunday School Class party on the 4th of July at Cathy & David Woods' house. I said something about needing to buy a new recliner, and our friend Joyce Fancher piped up & said "Do you want a brand new recliner? You can have it if you'll come after it." It turns out that her husband Leonard had bought this light green velour recliner and hated it when he got it home. He said it didn't fit him right. Well, I'm not one to refuse something being offered for free when it is something I need, and our leather furniture is a complementary shade of green, so we went after it. We had it up in our big master bedroom on Rosine- the one that was 30' long & 15' wide. It was generally only used by Steve when he was home sick (not often), because he could see the TV from it. I had thought I'd use it more, but I didn't, and over the years, it became the holder of our bedspread, throw pillows & pillow shams at night. (And since our room was the only thing upstairs and not seen by anyone unless I asked them to come up, guess what- I didn't make the bed on a regular basis- I just spread it up & the recliner sat patiently, holding all the stuff. ) Jump to this year, in January, when we moved in here. Steve had his green leather chair (which has since been replaced- he had worn the old one out), and I inherited the green recliner, and it fit me just fine- in fact I spend more hours in it now than in our bed or anywhere else. So Joyce, my dear, a thousand thank yous, once again. It is being VERY well-used!



About the sinus cleaning- it's just downright funny- even though it's a bit icky like everything else to do with this disease. But I bought a thing called a Nettie Pot. My friend Bettie Nixon had one when we were traveling together back in the fall to San Antonio to see Elise compete in cheerleading. She said it was wonderful for cleaning out your head. And it is! And the reason it is important is that what with all the mucus that is part of IPF, my head gets very full, and my nose runs quite unpredictably. Now of course this in itself is not pleasant, but then you factor in my oxygen cannula- the little headgear with the two prongs that fit just inside my nose- imagine what happens when your nose runs down & hits the cannula- a clog! No air! Panic! And then you have to remove it & wash it out, and during this time you are without air- so anyway, you get the picture. The Nettie Pot is my new BFF.



Today my cousin Cullen came over & we harassed hospitals. Actually, we didn't, but I had emailed Lainey in Dallas over the weekend, and she received my request to transfer (or send copies of) my records to Methodist Hospital in Houston. I had provided her with Kelley's fax & phone number. Kelley is the main admin to the transplant team at Methodist, and Lainey has that same job at Baylor in Dallas. When I received a reply from Lainey on Tuesday, she indicated that she would indeed comply and I knew that she understood that I meant I would like to have it done quickly. She told me then that it would take at least 24 hours before the Medical Records department there at Baylor would have them- she had spent the morning pulling everything together. She was instructing them (Medical Records) to fax everything to Methodist, so she said, and I'm sure she did- Lainey is very conscientious. So I waited 48 hours, and when Cullen came over today, we called Medical Records- Lainey had given us that phone number. The woman who answered had no clue what I was talking about- she put me on hold while she called Lainey, and of course she got Lainey's Voice Mail, so she left her a message. She also tried to reach her boss, the head of Medical Records, but she was out as well. So she took down my phone number and said that as soon as Lainey called her back, she would call me. So now I have to try again tomorrow- it will be Friday, and of course if I don't find out anything tomorrow, I won't be able to check again until Monday. I guess it's good that time seems to fly. Sometimes I want to stop it- I am getting weaker and things aren't moving, and I am not listed anywhere yet, although I was told on Tuesday by Lainey's boss that she was working with the Drs. there to get me listed, whatever that means. My boss John Hawa had a phrase that comes to mind. When telling me why he had fired a salesperson, he said "He just had no sense of urgency." And that is what I feel and what I wish I could adequately convey- I have a real desperate sense of urgency. But I know that it will work out- I trust. When I get in a dither and start feeling hopeless, I look back at all of the things that have fallen into place so beautifully along the way. I must be on 20 prayer lists- and I am deeply grateful for every single prayer. I just know that I am not alone, even though sometimes I feel very alone. As my pastor Robert put it- God did not promise us that we would not suffer and die, but He did promise to be with us both in Life & in Death." Amen. I'm going to bed. I'll try not to wait 4 days next time.