HOME SWEET HOME

I've just returned home from another extended stay at 'Spa Emory'. I went to the ER last Friday because I was running a fever, which is a big deal when you are taking TNF inhibitors, Chemotherapy, and Immune suppresant drugs. So as much as I hated going down there, I did go, and they did decide I needed to be kept in the hospitial so they could "keep an eye" on me. Boy do I miss my family and my home when I am down there in one of those boring little rooms! Michael and Will came down twice and even snuck in a large Frosted Orange from the Varsity. I got to talk to Amanda on the phone and hear all about her fun trip to Gatlinburg. Those were the highlights of my stay. Then on Sunday, Mom called from MARIETTA. She and Dad came all the way home just because of me. Wow, that made me feel so cared for. I have a one in a million family! Finally after 48 hours clear from fever, the gatekeeper released me tonight and I'm back home. I feel so much better just being here with my family and in my own space. After all was said and done, the doctors were kind of stumped as to what was going on, except they felt it was some sort of virus. Anyway, here I am, home again, and happy to be here.

A Lung Doctor with a Heart

If you've read my posts, you know my opinion of lung doctors. Today I saw Dr. Leeper for the first office visit, and I believe I've finally been blessed with a lung doctor that 'gets it'. Here is a picture of him. Somehow this man made it through medical school with his heart and bedside manner intact. He actually asked me "How has Sarcoid affected your life?" And he actually listened to my (long) answer. Wow. He wanted to know who my 'team' is (i.e. the names and addresses of my core doctors) so he can send them his notes! This is the type of cooperation I BEG for and rarely, if ever get. He was not intimidated by the fact that I go online to connect and learn, in fact he said he does it too and encourages it. We even knew some of the same 'giants' in the field by name at least. But there was some not so good news too. He said my Sarc is now stage 3, and that I need to start wearing portable oxygen all the time. I have the portable tank that I can carry over my shoulder, but I've only been using it 'as needed' so far, with the big oxygen on all the time at night. So as far as the disease goes, things are moving in the wrong direction. At least now I have a compassionate doctor to help me deal with it.

Mom, of course, took me to the appointment and heard everything too. I know she feels as much releif as I do, especially after some of the experiences we've had with a few doctors at the Emory Clininc. God bless her, I am so grateful for her servant heart and her faithfulness to her family. If you're reading this Mom, I love you.

Saturday Rollin' with the Punches

I can't say today was boring. That's a good thing. Many of my days stretch into hours of lonliness and boredom and I just get tired of being alone and sick. Today was different.


It's been foggy all day. Not cold, just foggy. It probably wouldn't have bothered me if I had stayed inside. But I didn't, and the dampness went straight to my bones and made me cranky and miserable. I had to apologize to my family for my cranky attitude, and even had to put back the steaks I'd planned to cook for dinner - I just couldn't pull it off. It feels like my bones, and especially my joints, are magnets for moisture, and the more moisture, the more pain. My chest got worse today; yesterday it felt almost all cleared up, but not today, it's back in full force. Oh well, at least I'm still only taking the 20 MG of Prednisone.


At least I slept INSIDE last night. Not so for Michael and Will. They were at a camporee and Michael said from about Midnight on, everything was wet. He sent Will straight to a hot bath when they got home this morning, we're trying to head off any ill effects!
Amanda had a meeting at the Y this morning. She is on the Teen Board of Directors. They are planning an inner city mission trip to Atlanta and a mission trip to Mexico next Summer. She was offered and INTERNSHIP for next year, should she decide to go to college locally. It's quite an honor, because they only offer 2 every year. Plus, she'll get paid! Yea! PLUS, they need some one to run lighting for the concerts, which is exactly what she loves doing. I'm so happy she is involved over there, it is such a healthy place.

Well, when she came home I took one look at her car and saw a rear tire was very low. The tread was nearly gone on both rear tires. I ASSUMED this was the 'problem'. So I followed her to the tire place and $270 later she drives out with Michelin's on both rear tires. But when we got home, she said the 'wierd' thing was still happening. Great, thats what I get for assuming. I took a quick ride with her and I would describe the behaviour of her 1993 Sable as a violent shudder randomly occuring anytime as you drive down the road. Not good. By this time, shops were closed, so we had to take it to a key drop at a repair shop on Main Street. I surely hope it'snot a transmission job, especially after putting the $270 in the tires, because the car probably isn't worth the cost of a transmission job. I guess we'll find out on Monday.

She is going to Gaitlinberg next weekend and needed some supplies from Wal-mart. Now honestly, can anyone really go for an entire Saturday without a trip to Wal-Mart? My legs felt like telephone poles; they just wouldn't move for me. So I gave her my credit card and I sat in the luncheonette while she shopped. Fortunately, I think she found everything she needs. No small feat for a teenage girl.

After all is said and done, I'm resorting to my pain pills,

my heating pad, and cuddling up with my tortie kitty on the bed.