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.

A Little Better

Each day since I started on anti-biotics has been a little better. Today was no exception. I felt pretty good until late in the afternoon, when I completely ran out of energy and had to take a long nap. I think I've had an infection for some time, but it was masked by the 60 mg of oxycontin I take every day. As usual, when I start feeling physically better, my mental outlook starts to improve too. That's a good thing.

Lili came over today and brought me some of that delicious Papaya she gets at the Mexican market. She peels it and cuts it up and it is all ready to eat when I get it. She brings me a big tub of it and it makes 2 meals for me and its really very healthy. I gave her some Lavender Shea Butter Sugar Scrub. She seemed confused as to how to use it, but I tried to explain it to her - plus the instructions are on the jar. Hopefully she'll like it. She's a trooper, she helped me out by picking up Will from school today.

Will's class went to see the Lion, the Witch, and the Wardrobe after school today. It was a great outing and one of the parents arranged a deal where the kids didn't have to pay for their tickets. Plus they each got a kids 'snack pack' for free. Mrs Benton drove Will home after the movie, and that was such a big help for me too.

Amanda is having a blast doing tech work for the plays at her schools. She is the top tech person for the Spring musical, 'Oklahoma', which will be a big job and loads of fun. She's really getting into this and I hope she can get connected with some local theaters to continue her persuits after graduation.

I'm hoping for positive news from Social Security Disability any day now. The attorny said the law judge was favorably considering my case, and I've been waiting now for 2 years for a decision. I'm checking the mail every day!

Maybe tomorrow I can get to the Y for that swim I've been trying to get since Tuesday. For now, it's off to bed. ZZZZZZZ

Waking up from a 2 day DAZE

Well its Tuesday, and like I was supposed to, I took my Methotrexate shot on Sunday. As always, it knocked me out for a good day and a half. I've been upstairs asleep in various positions all over the bed alongside various felines and finally rejoined the world of the living this morning. I think sometime during the daze my friend Beverly called and said she is moving to Pittsburg.

I've been ducking the MTX shots for over a month now with my Doctor's permission due to various other complications, but it was finally time to face the music (again). I'm supposed to inject myself with the wretched stuff every Sunday, which means until sometime early every Tuesday I'm either asleep or nauseated. What a thrill. At least the stuff is cheap; hey I've got to find a silver lining somewhere.

So today I was finally awake, and even saw two of my family members before they were off to school and work for the day. I still felt rotten, but determined to drive myself to the Y and have a swim. I didn't feel really steady enough to drive, nor did I feel like swimming, but I HAD TO DO SOMETHING TO FEEL ALIVE. Then I saw another problem which prompted a visit to the doctor instead of the Y, and after he did the lab tests he confirmed that yes, of course, I have another infection. And yes, of course, TOMORROW is my Remicade day.

The doctors conferred and agreed that it is too risky for me to have my treatment tomorrow. That means a delay of at least 2 weeks before another Remicade treatment. It seems every time I'm ready for a treatment, something comes up and it has to be delayed. I've heard so many success stories from other patients similar to me that combine Remicade and MTX, but we've been trying since last May and I can't honestly say that we've had a long enough stretch of treatments to tell if it is going to work for me or not. I keep getting these complications, these interruptions. It's very frustrating, and downright depressing some days.

The Costochondritis is finally winding down, I think. It was pretty nasty this time, but I didn't go to the doctor for it. All they do is make you take incredible high doses of Prednisone, then you have to taper off the stuff. The pain is excrutiating, but I chose the pain over the 'cure', at least this time. My chest is still very sore, especially when I move, but it's getting better a little every day. It doesn't hurt to breathe anymore at least.

I'm seeing a new Pulmonologist on 1/23 (actually I saw him once when I was hospitalized for Pneumonia); I guess I'll tell him about this round of Costochondritis and see what he has to say about it. But honestly, I've pretty much given up on the Pulmo. docs. I know I have to go see them; they have to do the PFTs and stuff, but as far as my pain and quality of life and DISABILITY, not a single one of them has ever UNDERSTOOD. It's amazing. It's like when they go to medical school in the Pulmonology department they must remove the 'bedside manner' and 'caring' and 'empathy' genes from these folks. My Rheumitologist gets it. Thank God for her.

I keep getting collections calls about a $360 bill for Crawford Long from Jan 05 but I thought I had paid them everything from back then. So I called the hospital and found out that I still do owe them some money. So I'm paying them this week. I'm dealing straight with the hospital though. I refuse to talk to those collections vultures, they are so rude and nasty on the phone and in their letters. I don't mind paying the hospital a legitimate debt but as far as collectors go I think they are bottom feeders; kinda like ambulance chasers.

I got another 'stupid' letter back from the Insurance Commissioner. I asked them to investigate alleged fraud on the part of my insurer and what did they do? They forwarded my letter to my insurance company for them to respond to. What? Do these folks actually read what is sent to them? Or do they just sit there on auto pilot collecting a state salary, forwarding things back and forth between complaintants and insurance companies. Amazing. I am simply dumbfounded. I really don't know what to say or how to answer them at this point, and I am really to sick and weak to deal with it all anyway. Maybe some one might read this and might care enough about the whole mess to deal with it for me. I doubt it.

Christmast at our House

Well, we all survived the Christmas season, though I must admit it was one of the wackiest ever at our house. Our eldest son was home on leave preparng to go to Iraq. That set the mood and the anxiety and last minuite-ness of everything. Then on the final send-off day, my joints hurt too badly to get out of bed at 4 in the AM, so I didn't get to go see him off. We hugged for the longest time and both shed some tears as we embraced. I won't see him again until Dec 01 of 2006. He is in Virginia now, then will ship to Camp Penddleton in CA, then on to Iraq. If yo are reading this and are a praying person, please pray for my eldest - John Hagan Allen. He is 21 and a brave patriot and we all miss him dearly. In the midst of this everyone in the household got either the flu, a stomach virus, or food poisoning. I personally had something of the gastric variety which landed me in the hospital for the week prior to Christmas. It was awful and dastardly. I think it was food poisoning because I've never been quite so sick at my stomach before in such a wierd way. The hospital was no fun and lonely as it always is. I did watch Divorce Court out of sheer boredom and I had some funny stories to tell the family when I got home. Well, needless to say the plans I had for Christmas gifts, cards, decorations, activities with the kids, and generally everything pre-Christmas fell by the wayside. Although I was released a few days before Christmas, I still feel seasick and am nursing a Ginger Ale most of the time. I had to cancel my Remicade appointment because it fell during a time when I was running a fever. I feel very blessed, however, because they were able to fit me in just one week later. Ususally if I miss, I have to wait weeks to get back into rotation. Since Remicade is the first treatment that has shown any promise, I hate gettting out of sequence and waiting to get back in. I'm supposed to be taking a Methotrexate shot once a week also, but I just stopped them throught December. They make me so nauseaus and also knock me out for about 24 hours. I decided to resume them next week when the kids go back to school. I've been nauseaus enough lately, and I've missed too much time with the kids as it is. Over the holidays, we put pergo-type floors throughout the house. So now we have tile and stone on the middle level, and faux hardwood on the bottom and top levels. We hope this will be easier to keep clean, and will also harbor less germs and things that get into our lungs. That was the motive behind the change. The floors are georgous and it's almost like having a new house!! Everyone seems to be enjoying them, except, they are a lot more noisy than carpet. But I think we'll adjust. Some of that carpet had been in the house since 1989 and I'm sure was laden with all sorts of not-too-nice critters. We've had a few cold and wet days, which are incredibly painful for my joints - but for the most part the weather has been warmer than usual for Georgia in December. I hope it stays a little on the warm side!