Too much time has passed since I have provided you an update. Sorry about that.

The test results did come back from the Pulmunary Function Tests and the technician was right on. The lung disease has not progressed and the functions are all good. The bad part of that, which when put in perspective isn't really bad....if I weighed less I would probably be breathing better. So there it is, another healthy reminder of how important it is to control the things you can control. I wish I would have taken time to write that down before the Thanksgiving feast, maybe I would have made a different choice when it came to that second piece of pie.
No use looking into the past when it's the future that's in front of us.

I also had an appointment with a GI specialist since I last blogged. I have a colonoscopy scheduled for January 4th. I'm counting on dropping a few pounds that week. I will have to make sure I weigh in at Weight Watchers after the procedure. Amazing all the muscles that need to considered a when you have a "muscle disease".

Lately I have been thinking of all the little things that I have heard that help me make some of the choices I do each day and would like to share a few of them with you.

A couple weeks ago I was watching Dr. Phil and the author of "Tuesdays with Morrie" shared a story that just stuck with me.
He said, each morning when you wake up pretend there is a bird sitting on your shoulder. You say "Good Morning Bird" and the bird says "how would you live today if it was your last"?
Now, remember, this bird is not leading you to a money tree so don't go and quit your job.
However, kiss your spouse, smile at your neighbor, say Good Morning to your CoWorker and mean it, if you have kids decide if the last words your going to share with them are grumpy ones and here's a new thing that I heard once that I will try to never forget.....
You can never take words back once you let them out. You can however spend a lifetime trying to forgive yourself or someone else for words that hurt.

Don't do that to yourself or anyone else.

Finally, when someone asks you "How are you doing?", consider this response "my cup runneth over".

Have a great day.
My cup runneth over.

Kris

It's 3:30 AM

It's 3:30 AM and for the third time, or is it the fourth time, this week I am wide awake. I believe this would be a side effect of the prednisone.
I try to fall back to sleep. One of the things I do is say the alphabet and try to think of as many positive words for each letter as I can.
It goes something like this....A, amazing, attitudes....B, beauty, believe, Beth...C, courage, care, confidence (you get the picture). It doesn't do much for putting me to sleep but it certainly fills me up with good thoughts.
Today (well, actually yesterday, Thursday) I had my Pulmunary Function Test. The technician, Patty Jensen was outstanding. She provided a detailed explaination of each test, the purpose of the test, what the results may uncover, how to perform the test, etc....
She had the results from the tests that I took in May and so she gave me a quick comparison and said that the pulminologist would read the results and send a report over to Dr. Cohen early next week. All looks good. Three of the five tests show slight improvement and the other two are nearly identical to what they were in May. When I find out more I will let you know.
I have to tell you, I am having more good days than bad. I don't want to jinx myself but either the prednisone, or the new work schedule or something is working. I read an article once where a myositis patient said something to the effect of she never really knew how bad she felt until she felt good. I now understand what she meant however I have no really good way of explaining it to you.
Earlier today someone asked me if I ever get mad. I said, I am sure I do but I thankfully I don't remember the last time. I guesss when you know that your energy may be compromised you don't want to waste it on something negative. Sure bad things happen but in the grand scheme of things "my cup overflows".
I hope yours is too.

Good Night....or Good Morning depending on when you read this.
klb

PS - I am heading down to the big screen TV. I love the DVR feature. Is there anything finer than watching Greys Anatomy without commercial interruption?
Yes, watching it with Bill, at a reasonable hour.

Tuesdays tests

As you may remember, Tuesday, November 6th was a day I had a couple of tests scheduled. A CT Scan of my chest and an MRI of my brain. The tests were non invasive. They didn't hurt. The MRI was loud and nerve wracking but not painful. When all was complete the technician said that the doctor would have the results in 48 hours.
Yesterday afternoon the doctor called (ahead of schedule, I love that)

The MRI was normal. Yeah, I have brain and it's a good one. It's a keeper.
The CT of my lungs was not normal. Now don't freak out, it wasn't normal the last time either. The beginning of my disease cause a condition called ILD or interstatial lung disease. There is "fogging on the image" at the base of my lungs and there is a new spot that showed up as well. To the best of my knowledge, this "fogging" has also been called "ground glass". The doctor explained that it's possible it is a small infection in my lungs, but that with the number of medications I take to suppress my immune system we need to make sure that we are vigiliant to symptoms and keep a close eye on everything. At this time she will leave all medication as is. I am scheduled for a pulmunary function test next week and once the results of that are in she will make a determination if it will be necessary for me to seek the care or evaluation of a lung specialist.

That's it in a nutshell.

I bought a book recently. Actually, I bought about a dozen of them I liked it so much. Anyway it's called "What Children Know about Angels."

Here's a little snip-it:
"When angels talk to God they say "Hallelujah !" It means "awsome". (Benton-age 9).

Have a great day.
Tomorrow's Friday already.

klb

No news is.....

No news is just that.

Dr. Cohen just called with some of the lab results though not all of them are in yet. Of those that came in, I look good/normal.
My TSH level which is related to the thyroid is normal but continuing to move close to the abnormal range. She believes this bears watching and will forward it on to my Primary Care Physician.
They received the approvals for the MRI of my brain the the CT scan of my chest/heart so I will schedule those tomorrow.

She will refill my methotrexate injection prescription for another month and is trying to keep the horse in front of the cart and let the prednisone do it's magic before making any other major prescription changes.

I mentioned yesterday that I was feeling great. It really was an amazing day. I have a hard time putting into words what that's like. By 6:00 last night I could feel myself fading. By 7:30 I had stood in the hot shower for 20 minutes to get some relief in my legs and then I was in bed for the remainder of the evening. I did get to see some of the Packer Game and was thrilled to see they added one to the "Wins" column.
Today was a good day.
I have been blessed.

Thanks again for checking in.
Kris B

I feel GREAT

I woke up this morning feeling GREAT. It was 5:00 AM, I had a peaceful, restful sleep (I am pretty sure I was sleeping by 7:00 PM) and I was ready to go. I WANTED to do my Physical Therapy and I did and then I gave myself a "reward" sticker and added an activity point to my Weight Watcher journal.
When Bill got up he noticed right away... "You feel good today, don't you?" I wonder what I look like every other morning. Probably like one of the many ghouls or witches that graced our yard yesterday.
At 1:00 PM this afternoon I emailed him and let him know I was still feeling good and it's 3:00 PM and I still feel amazing.

I am not sure if you look at the comments others post. My sister-in-law Meg sent this and I think it beautiful.

When we come to the edge of the light we know, and are about to step off into the darkness of the unknown, of this we can be sure: Either God will provide something solid to stand on, or we will be taught to fly.

Blessings to you.
Kris B

Today's appointment

Today was my monthly appointment with Dr. Cohen. I try to go prepared with a list of concerns and observations so that we can make the most of our time together. Todays list consisted of the following bullet points

• I have scheduled an appointment with the GI doctor she referred me to. That appointment is November 19th
• I recommitted to Weight Watchers on October 1st. I need to have control over some aspect of my life
• Twice over the past week while I was resting I woke up startled and choking on my spit
• I've noticed some stiffness in my hip and pelvis area over the past few days
• Per her instructions I have not gone to the gym in a week. My arms do not feel better and actually feel slightly worse (weak, tired and achy). I want to go to the gym for my mind, body and spirit. Would 10 minutes a day be an OK place to start?
• Tremors (shaking hands) I have noticed my hands and fingers shaking more. I believe it is because my neck and arms are more tired. Slightly worse on the left side/
• Could she run labs to check my Vitamin D levels, Anemia and Thyroid?
• When are my next lung and heart check ups

Now, that's a pretty complete list and we got through the whole thing. The lab work was drawn and the results will be in over the next few days. She will forward them on to an endocronologist to review if she sees any flags or warning signs.

She also ordered the following:

A Pulmunary Function Test (test to check my lung input and output), a CT scan of my chest (heart and lungs), an EMG with the neurologist at Froedert and the one that kind of threw me for a loop was a MRI of my brain. She was really concerned about bringing this up and was very attentive to how I responded to this suggestion. I told her I was not a worrier by nature (once upon a time in my life I believe I may have been the worlds greatest worrier. Look what life has taught me) and that a test is just a test until the results come in. If you don't do the test, you don't know the results and if you don't know the results, you don't know what your might be up against and you can't put a plan in place. Knowledge is Power. On the way home however I was thinking about it a little more and I thought I should have mentioned that I was a banker and if she needed help with her finances I would be very comfortable being that person for her. In the same manner, I am glad that she is my health expert. I will take her advise knowing that she worked very hard to be in the role that she is in today. I trust her. I absolutely believe she has my very best interest, my very best health and treatment in mind.

Until the results come back in, there will be no changes or adjustments to my medication or treatment. The prednisone will continue at the same dose for at least another 30 -60 days unless of course the labs work would indicate a need for a change. Now, to leave the blog entry on a very positive note....the test of my neck was significantly improved over the last time and at WW I lost 3.8 pounds this week.

A Florida moment (you might want to read this one after you read "Looking Back")

I wanted to make sure I wrote this down because it is one of those sweet words from my child I don't ever want to forget....
When we got into the rental car and headed for the hotel we decided a quick stop at the grocery store would be in order...snacks, soda, etc.
After shopping I was buckling Emma in the seat and she said to me "mom, do you think our baby is sad?"
"Why honey do you think the baby is sad?"
Emma replied "I think she might be sad because babies need their mommy's"
I assured her that there were some beautiful angels in heaven caring for our baby until we got to see her again. Emma remembered her great grandma's and great grandpa's and we all found comfort in sharing in that moment of our little one being cared for by those that loved us so much while they were here.