TMA - My Campaign

Here it is.
The link to my 2008 fundraising campaign for the Myositis Association. I hope it works.
I went to the WAC (Wisconsin Athletic Club) during the Packer game today and walked for 13 minutes on the treadmill. I didn't get very far (.75 miles) and I won't count it toward my 1044 miles because that doesn't start until January 1st but I thought it was a great way to start the week.
I am considering opening up the invitation to see if I can get other Myositis patients, caregivers or family to join in the walk, maybe meet me along the way. It's often more fun and encouraging to walk with a friend, don't you think?
Let me know if you are interested in the virtual walk to Denver.
Have a wonderful week.

Let me know if the link works.

TMA - My Campaign

klb

Kris Bargers Journey of 1044 miles begins with one step...

Dear Family and Friends,
I will be sending out the following message via emails and USPS over the weekend. I just thought I would give you a sneak peak.

My’-o-si’-tis: a muscle disease believed to be autoimmune in nature causing inflammation and degeneration of muscle tissue.

One of the goals I have chosen for 2008 is to raise money and awareness for the Myositis Association. As many of you know, I was diagnosed with this rare muscle disease in June 2006. Prior to this diagnosis I enjoyed the challenge and thrill of triathalons. Somehow, exercise took on a whole new meaning for me when there was a finish line in front of me. Going to the gym, because it’s good for me…isn’t working so well. I need a new motivator.
On September 18th, 2008 the 15th annual Myositis Conference will take place in Denver, CO. I am not sure if I will be in attendance for that weekend event but I have decided that I will swim, bike, walk and run my way there between January 1st and September 18th via my membership at the Wisconsin Athletic Club and the beautiful streets and bike paths of Milwaukee (once the weather gets nice again).
It is 1044.1 miles from my home in Bayside, WI to Denver, CO.
No freaking out allowed.
No saying, "Kris you have a disease, you can’t or shouldn’t do this."
I can and I should (and the doctor will be watching me closely). I know this disease was part of God’s Master Plan for me. Right now, I know I have it to make others aware of it and to help those that have it find their reason too.
I will begin my journey on January 1st.
My goal is to raise at least $1044.10 (one dollar for every mile)
AAA is sending me my TripTix today. If you are interested in following the journey I will keep you posted through my blog at http://krislanebarger.blogspot.com.
Thank you in advance for your support and encouragement.
Sincerely,
Kris L Barger

Must be the holidays...

Hello friends and family,
It must be the holidays...
This week has been a little hard. On the way home from work the last two days I found myself exhausted. Really, not able to make one stop on the way home, not one errand. Just enough to get home, eat something, or too much of too many things, in hopes that it will give me enough energy to skip the nap and cross something else off the "to do" list. In the end it has ended with a nap so I should really identify that and skip the "eating too much" part as it is not giving me ANY of the results I desire.

By chance do any of you know anyone who enjoys playing with an excel spreadsheet?
I figured out a way that I can start to track "How I feel" based on some set criteria. I think a spreadsheet would probably be the best route to track this but for now it's on a word document and then a number on my planner.

Here’s the criteria:

1. Was I able to get out of bed by 6:00 AM – Yes is worth 2 points
6:15 AM – 1.75 points
6:30 AM – 1.50 points
6:45 AM – 1.25 points
7:00 AM – 1.00 point
After 7:00 – 0. Weekends probably need to be categorized differently.

2. Did I sleep a minimum of 7-8 hours last night – 2 point for yes, 0 for no

3. How many hours did I spend awake last night – subtract .25 for every 15 minutes of awake time

4. Did I do my Physical Therapy today – 1 for yes, 0 for no
5. Did I go to the WAC – 1 for yes, 0 for no
6. Did I need to rest in the afternoon – 0 for yes, 1 for no
7. a) Did I go to bed between 8-9:00 PM (with the kids) – 1 point
b) Did I go to bed between 9-10:00 PM – 2 points
c) Before the kids is - 0 points
8. Did I work today at least 4 hours – 1 point

10 points is a great day, 1 point is a day that I felt like crap.

In addition to documenting the above I would like another line to document the medications that I take related to myositis and the dates in which those doses changes.
Prednisone, Methotrexate and Azathioprine.


Thursday, December 20th
2
2
-.50
1
0
0
1
1

No changes to medications today. 40 mg of Prednisone (even date)/175 of Azathioprine

Total =6.50

So, if you know someone who might find joy in putting this into a spreadsheet for me, please let me know.

Here's a quote from the email I received from my Oprah Mission Calendar:

"What an enormous... magnifier is tradition! How a thing grows in the human memory, in the human imagination, when love, worship, and all that lies in the human heart, is there to encourage it." --Thomas Carlyle

A thought for you based on the quote above:
Hold the hand of someone you love this Christmas while you sing "Silent Night" The song reminds me first of Christmas at my Grandpa and Grandma Luebke's house, singing around the dining room table, the candles flickering on the walls and reflecting from the iced windows of the porch that shared the kitchen wall. Next it reminds me of the candle light service at Pilgrim and the faith that streamed in the form of a tear down the cheek of my dad, and most recently holding my mom's hand at the Lorie Line concert....no words, just the sharing of a hand, a faith, a love, an admiration....

Good night.
Kris B

Froedert Green Card

Today I had my appointment with the neurologist at Froedert Hospital. Unlike other previous visits I have had there today I had to go to the registration desk and they completed a profile on me with contact information, insurance stuff, etc... and then they gave me my own "green card" I was trying to think of all the things this might get me...
Frequent Flyer Miles
A free cup of coffee after six visits
$10 off when I spend $50.00 or more
the list could go on and on.

Today I had another EMG. This test is two fold. The first part is a measure of sensor and motor nerves, the second part is a measure of the muscle and any myopathy within the muscle. Bill brought me to this appointment and I invited him in to watch and ask questions. I learned a lot more having him there. I was more comfortable asking questions with him there and I was less intimidated by the screen knowing that what the doctor was seeing and explaining was being heard with a second set of ears.

The tests were pretty good. Actually, some better than the ones I had done the last time. The goal continues to be one that frees me taking two forms of chemotherapy and the steroids. I have to remind myself that the doctor hoped to get me there within a two year timeline and I am only a year and a half in.

Patience
Patience
Patience

Shaking hands, unexplainable, uncontrollable and terribly untimely sweating continue to bother me. I asked the doctor about it today and he feels that it is very likely the effects of the medication, not the disease.
I am not certain that splitting the dose of Methotrexate into two made too much of a difference but I might have more energy/less fatigue yesterday and today then I have had in the past on a Monday or Tuesday. I have not figured out a way to document this. If anyone has any ideas I am open to suggestions.
I definitely felt better on Sunday even though I spent six hours in the car traveling home from a wonderful weekend in Minneapolis.

Just a quick note:
After the first of the year I will begin distributing "Youth Juice". I will send more information as I get it together but if you want to check out another website to get a sneak peek you can go to

http://ourworldnetwork.com/kbarger

If you would like to try a bottle without buying a case let me know. I have a couple of cases at home now for my own consumption. It's spendy but when you are looking for something to make you feel better I found it to be worth it. It's $45/bottle.
Like a really fine bottle of wine, right?

I don't have a quote for today, just a word.... BELIEVE.

klb

Ups and Downs

It's been a bit of a roller coaster the past few days. Sometimes Bill tells me he thinks I would feel better if I just let myself get angry. Well, Sunday was that day...
I do not feel well on Sundays. I believe it's the Methotrexate shot I give myself on Saturdays but I get a terrible headache during the night that continues the next day and I am exhausted, just worn out.
This Sunday, after church, while the kids were in Sunday School Bill drove me home so I could rest. This is when the grumbling started.
I was angry that I could not enjoy a glass of wine or a cocktail with friends the evening before at our annual (but small) Barger Christmas Party.
I was angry that on one of the two days that we can spend together as a family I would be spending it alone in bed.
I was angry that I don't remember what it feels like to feel really good and not just OK.
I was angry that when someone asked me "how are you doing?" I feel like the only response is I'm OK.
At one point, I yelled out the bedroom..."and I am angry that being angry doesn't make me feel any better."
So, that was angry. None of which was displayed in front of Jake or Emma. I continue to remind myself that my children learn more from my actions than my words.
Yesterday I had a doctor appointment. The labs look good. Again, the frustration in this is that good means unchanged, not "better" or "healed" or "not sick anymore"
The doctor suggested a new approach to the methotrexate to try and offset the way I feel on Sundays. Instead of giving myself the full dose on Saturday night, I will give myself a half a dose on Saturday night and the other half on Sunday morning. It's worth a try. Now that I am no longer freaked out about giving myself an injection one poke or two, just doesn't matter.
It's also time to start tapering the prednisone again and see how I do. We have a schedule in place that should have me down from 40 to 10 mg in the next eight weeks. It's a slow process because of the effects it can have on my adrenal glands but slow and steady is better than no change at all.
The next medical update will come next week after my appointment with the neurologist. I have to have another one of those EMG tests done. They are scheduled about every four to six months and there is really nothing about this test that I enjoy. I actually think they get worse each time only because I know what to expect now. Bill's coming with me. I am hoping that he will have some really good questions or insights for the doctor. By the time the test is over I am just so relieved that my mind goes blank and I can't think of anything to ask and I don't retain the information that is shared. He's my wingman.
I have a great quote to share with you that I got from my friend Chris Murphy. It's the motto her parents (John and Cindy) wrote and live by....

Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other,body thoroughly used up, totally worn out and screaming "WOO HOO,what a ride"

Have a great day.
Kris B

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.

Looking back...

I don't think I spend a lot of time looking back but here goes an entry that will do just that.

In January 2006 I went snowmobiling. After a long, cold weekend I noticed that went I changed temperatures (like going from the outside to the inside) a few of my finger tips would turn a little numb and get white. I ignored it.

I was pregnant. I had more side effects (fatigue, achiness, shortness of breath, a nagging cough) then I remembered with either Emma or Jake but I was older and had two kids at home so I didn't think much of it.
Three particular instances remain very clear in my mind:

• Standing at the end of our bed one morning in March or April, coughing so hard I couldn't catch my breath and saying to Bill "honey, I'm worried. If this cough doesn't go away, there is no way I can get enough oxygen to get through delivering this baby."
• Sitting at my desk one day at work, my neck had been bothering me for days and it was so unbearable at that moment that I could hardly lift my arms. I had to leave to have a massage therapist just so I could get through the day. When I was at the therapist (a client of ours) she said she wasn't sure she had ever felt anything like it before and she worked at it the best she could.
• Walking back to the bank from an "after work event", the end of April, with two of my coworkers commenting on how I couldn't believe how bad my hands and my knees and my ankles ached. The coworkers were both men, both dads, and I am sure they thought it was going to be a long pregnancy for everyone.

The next day, I was getting ready for work, putting the breakfast dishes in the dishwasher and there was a "pop" and water gushed down my legs, I went to the bathroom in absolute terror with the phone in hand and I called Bill at work and told him what happened. He did his best to calm me down, told me to call the doctor and that he would be right home (he was downtown at work already and at least 30 minutes from getting home). The next call was to the nurse. She was so calm and so positive and she took down all the information, told me not to worry and she would call me back. I was not having any cramping and that was a good sign. The next call was to my dear friend Brenda. The kids were both still sleeping. She lives a half a mile away and was here in a heartbeat. I was sitting in a chair with a towel wrapped around my waist and tears in my eyes and she hugged me, said she would pray with me, she got clothes for the kids together and whisked them out the door. She would get them to school. Bill got home. We went to the doctor. The whole way there Bill kept telling me it would be OK. Whatever happened we were together. We had each other to hold on to. We could do this. The doctor listed with the ultrasound wand and didn't hear the heartbeat we had heard many times before. She said not too worry she would listen with an internal ultrasound and as we prepared for that she said "I am so sorry, the baby is coming...." I started contracting but not hard enough to deliver so I got an IV of patocin. The contractions came harder and the baby was delivered there in the last room on the right. There was not enough time to get to the hospital. Bill held my hand the whole time. He was so strong for me. There was a nurse, I think her name was Grace. She was a labor and delivery nurse and she was so caring and compassionate. She called me later that day. She called me the next day. She really cared a lot. That afternoon when the school bus brought Emma home Bill brought her upstairs and we told her that the baby was born too early and small to live outside mommy. Now those are some tears I will never forget. I am not sure there is a greater pain.

Guess what....we had plans to go to DisneyWorld. The kids very first trip to the Magic Kingdom and there was nothing that was going to stop me from going there. We were suppose to leave on Saturday but the doctor would not let us go until Sunday or maybe Monday but we went. There was some concern because I was running a fever and having terrible sweating episodes. I wasn't not going to go to Florida. It wasn't the trip we had planned but we all needed the distraction. My arms ached. I remember reading that this is often a symptom of losing a child. The moms arms aching to hold that little one again, I believed my symptoms were in my head or symptoms of this tragedy my body had just been through. On the beach in Florida I watched the kids pick up seashells and build sand castles and when it was time to go, I couldn't get up. Really....I could not stand up. My arms were not strong enough, my legs were not strong enough. I called for Bill and once he got me to my feet I could walk but I was scared.

When we returned to Milwaukee ( a week later) I called the doctor and said that I was worried because the symptoms that I thought were related to pregnancy were still there and I was clearly not pregnant. I saw my internal medicine doctor, she ordered xrays of my hands and wrists which were clearly what was bothering me the most and in that same appointment had me see a rheumatologist. He looked at the xrays, didn't see any joint damage and what seemed as an after thought he listened to my lungs. He heard something that concerned him and sent me back to xray and I had a chest xray. The radiologist read this right away and the next thing you know I am back with my primary care doctor (three hours later) and she is telling me I have congestive heart failure. They did a comparison and my heart seemed to be enlarged from an xray that had been done a year prior. I called Bill who was of course wondering where the heck I was all this time and I remember telling him I was on my way home and we would talk when I got there. I could not imagine telling him this over the phone. More tests, EKG's, EMG's, MRI's appointments with Cardiologists, Pulminary Specialists, Neurologists, the first diagnosis was interstatial lung disease (my lungs had "ground glass" that showed up on the MRI) in mid-May and a biopsy from my left thigh lead to the additional diagnosis in June of 2006 of Myositis.

So that's it in a pretty big nutshell. I have a doctor appointment tomorrow at 2:30 with my rheumatologist. I haven't been feeling very well for a week or so. I am now back on 40 mg of prednisone as well as all the other stuff and in hopes that tomorrow other options will be considered and presented. I'll keep you posted.

No more looking back for a while. I wouldn't want to miss what's in front of me.

Thanks for checking in. This continues to be a great form of therapy for me.

Mystery Diagnosis

Just got an email from my dad.
The times referenced for the Discovery Health show are eastern time so depending on where you are you will want to adjust accordingly.

Thanks Dad.
klb

A quick update with more to follow....

Hi everyone,
First, thanks Dad for connecting with the Myositis Association to find out more about the Mystery diagnosis show. Here is a copy and paste from what my dad received....

The episode is titled "Bizarre Visions." It does not specifically mention myositis in the description but does point out that LaShaun Davis will be featured. LaShaun is a polymyositis patient and TMA member. The show appears to be airing on October 15 at 10:00 pm and then re-airing October 16 at 1:00 am; October 20 at 7:00 pm; and October 21 at 2:00 am.

We recorded it at our house and I had a chance to watch it this morning before going to work.
If you have cable available I would recommend watching it. It might help you better understand what I am dealing with. There are two "mystery" diagnosis stories, the Myositis one is the second story but holy cow...can you imagine being the woman in the first story, no thank you.
Anyway, watching LaShaun's story certainly brought back many "remember when's" for me and I decided that I would spend some time documenting what happened before I was diagnosed, what testing took place and how long it took to receive a diagnosis.
That will follow but not until the kids go to bed and I have enough energy to put it out there.

I called Dr. Cohen today. I have not felt really good since last Thursday.
In a nutshell, my arms are bothering me. They are achey and tired. In addition I am feeling more fatigue. It seems to be a struggle to get up enough energy to complete some every day tasks. In church on Sunday, I noticed that I was short of breath while singing. Today after a few laps (3) in the pool I showered and got ready for the day and a return of a terrible sweating episode struck me. Some of you have had the honor of being in my presence during one of these. It's disgusting. Thankfully I was at home and not in front of clients or coworkers.
Any one of these things would not have lead to a phone call to the doctor but the combination of them and the fact that it was all within a week made me pick up the phone.

After a phone consultation she recommended I increase the prednisone from 20 mg daily to 40 mg daily and although being a couch potato is not the answer neither is spending time at the gym. I really struggle with this because I do feel better mentally (and physically while in motion, not the next dayor the next day or the next day...) when I go.

One of the things I do when I don't feel well is try and figure out what triggered it.
Here's a review of possible triggers:
1) Last Thursday I went to the gym after weight watchers and spent 30 minutes on the treadmill. I went 1.95 miles.
2) I moved my office and transitioned into my new job (could be stress related)
3) I drank wine the week before while in LasVegas and had a small glass with the extraordinary German dinner Bill prepared on Sunday night.
4) Two people on the same day asked me if the weather effected me. I had not considered that but will add it to my list.
5) I added prednisone but it's really hard to measure if it's made me feel any better.

OK, that's it for now. I think my next entry will be an overview of how this all came to be. Stay tuned if your interested or feel free to skip right by it if you don't want to relive that very hard time in our lives. Before we go there and before you skip right over it, please know that I believe more now than ever that my life is truly blessed. I am not the same person but I think I might be a better one.

Good Night.
Kris

Let me bring you up to speed

Let me bring you up to speed...
The last few weeks have been a bit of a blurr.
On October 1st I took on a new part time position at PyraMaxBank as a floating BEO. I have a team of four CSR's and will be interviewing for the right person to fill the Personal Banker role. The purpose of our team is to be available to jump in and serve when a branch is effected by illness, turnover, etc...
I am in the process of moving my office from the Third Ward to our Corporate location in Greenfield. It's been a roller coaster of emotion seeing the reports and pictures of when we first opened the doors in June of 2005 and how far we have come since then and all that we have accomplished.
That's the thing about life...
It's a roller coaster. It's scary and exciting and you don't know what's around the next curve but getting off while in motion would be a BIG MISTAKE.
I'm staying on the roller coaster of life. I am enjoying it.
Please enjoy it too, is there really any other way?
OK, now another quick thought about starting something new.
We do not start alone.
We have a team, a coach and a cheering section, and a concession stand for when you need to get up and walk away to collect yourself.
I am one of those for you. Which every one you need me to be. Just ask. You may or may not know it but I'm just returning the favor.
Thanks for being on my team.
Thanks for coaching, for cheering, for buying me a diet coke or a coffee when I needed a break.
You are great.

Have an awesome ride.
Kris B

Do you have cable TV...

Hi everyone,
Just a quick cut and paste while I am preparing dinner. I will write more later regarding my personal updates but wanted to pass this information on to you.
If you have cable TV, you might enjoy this special. We'll be DVR'ing.

Talk to you soon.

Polymyositis featured on Discovery Health
TMA (the Myositis Association) is pleased to inform you that the Discovery Channel will be airing a show focusing on polymyositis on October 15 at 10 p.m. E.T. TMA has been working for some time with the Discovery Channel to have this program aired, and we are looking forward to it having it on cable television. Please check your local listings to confirm that time; or visit http://dsc.discovery.com/. "Mystery Diagnosis" is the name of the series and the segment will feature a PM patient as well as Dr. Lisa Christopher-Stine, Co-Director of the Johns Hopkins University Myositis Center.Although TMA has not been able to view the episode in advance, the care and attention given by the producers at the Discovery Channel to this topic and the information they requested from TMA suggest that it will be an informative and interesting picture of what happens to a patient with polymyositis symptoms seeking a diagnosis. Although polymyositis is the disease featured in the October segment, TMA has also worked with the producers on possibly featuring juvenile myositis, dermatomyositis and inclusion-body myositis, and will continue to do so.For those unable to watch the live show, Discovery Health typically posts its broadcasts after they are aired, at the web site noted above.

The good and the bad of 9/26/07

Well, today has been a roller coaster. This morning I shared with my branch my decision to step down as the Branch Executive Officer of the Historic Third Ward location. The decision was incredibly difficult because the joy and rewards I receive from that job are countless. The people are wonderful. The clients are great. The neighborhood is full of energy and excitement. I will miss it terribly. OK, that's the bad. The good is that PyraMax Bank found a way that I could continue to add value to the company. As of October 1st I will be working part time (no more than 20 hours a week) as a Floating BEO. This will provide me the opportunity to continue to do what I love, working for a company that believes in me (and I in it), and put an additional 10 hours a week toward improving my health.
Now, speaking of my health....my doctor appointment scheduled for October 2nd took place today because the symptoms that cause muscle weakness and achiness in my neck and arms was becoming more of a concern to me and I didn't want to let it go another week. If anything was going to need to be changed I wanted to do it now instead of three days before Bill and I jet off to Las Vegas for a weekend together.
The physical/strength exam that my doctor performs immediately indicated a weakness in my neck and arm muscles. The lab results will not be back until tomorrow or Friday but she bumped up the prednisone to 20 mg, bumped up the oral chemotherapy (azathioprine) from 2.5 tablets to 3.5 tablets a day and gave me a prescriptions to soften the side effects of the prednisone. "Take that and call me in the morning" Just kidding. She will see me in a month or on a needs basis as determined by me.
Dr Cohen is a great doctor. She was very pleased that I changed my appointment and saw her today. She prepared a statement for me to carry with me when I travel so that if for any reason I would end up in an emergency room those caring for me would have a basis for treatment. Speaking of emergency rooms...I mentioned to her my desire to consume a fantastic glass of wine with my wonderful husband as we dine at DelMonicos in Las Vegas on Friday, October 5th (our 11th wedding anniversary). I needed assurance that all the medical warnings about eliminating alcohol consumption wouldn't ruin our honeymoon and land me in the emergency room. She assured me it would not though it would show up on my next liver tests but that would be OK this time. Her personal prescription was to enjoy the time away.
Well, that's it for now.
Thanks for checking in.

"The priviledge of a lifetime is being who you are." - Joseph Campbell

Reason #2

Reason #2 why I do not like taking prednisone....
It feels like it takes over my emotions. Sadly it's not the happy emotion or the giddy emotion but it's the bitchy one and it seems to jump out at Bill for no reason at all.
He just looks at me and says in such a kind and caring voice..."What's wrong?" or "Are you OK?" and something takes over and I snap at him. "I'm fine" or "nothings wrong". The truth is nothing is wrong. I don't know why he asked. What did I do or say to indicate something was wrong.
Do you think I should caring around one of those "quiet please" signs from the golf tournaments that says....BEWARE PREDNISONE AT WORK.
Well, if you see him remind him how much he is loved and that it's not me that's barking at him it's the drugs.
Now, if I bark at you or am short in a conversation, please don't think twice about it....just know I am not myself right now but as Arnold the terminator says..."I'll be back."

OK, I thought I was done. But all of a sudden I find myself wondering why it was so easy to tell you about the side effects of this drug and not Bill. Did I just figure it out while I was typing? He's at the pet store with the kids. I will call him and let him know right away.
Communication...with a friend, a spouse, a parent, a sibling, a relative, an employee... is so important. Just think how crappy we would all feel if we expected someone else to just know what we are thinking or whats going on with us.
Talk to those you cherish. Tell them how you feel. If you don't they might never know and you might never know what would have or could have been.
Good Night.
Kris

The ups and downs of prednisone

OK, I followed doctors orders and took my first 10mg of prednisone on Friday when I got home from work.
Number one reason why I don't like it came to be around 12:00 midnight on Friday night/Saturday morning...My body is tired and my head is wired. I could not fall asleep. I read, I snuggled in with the kids for a little bit and watched them sleep, I read some more, I watched TV, I prayed that I would fall asleep so that I could get up and go to work in the morning and have a fun weekend with my kids.
I did not fall asleep.
I got up and was at work by 7:45 AM however, I couldn't make it until noon and had to excuse myself shortly after 10:00 AM. Of course, now, in the middle of the day when I want and need to be active, my brain is ready to rest and my body is in full agreement. Thankfully I work with a wonderful group of people who excused me with their blessing and held down the fort until the branch closed at noon.
Now, that was a down...let's see...what's the upside?




Well, it's taking me awhile to think of something. I'm more comfortable. My arms don't hurt as much and last night I was able to fall asleep and sleep through the night. Another good thing...I only have to take it once a day, in the morning, so my body will adjust to it's effects much more quickly.
Here's the deal...there are things in our life we can control but their are also things in our life that we have to let go of and let God take over. At the same time making the most of each day and what we are given.
In church this morning a family friend who keeps up on my blog said she really enjoys reading it. I am appreciative of her kind words and shared with her that it's therapeutic for me to sit and type about how I am feeling and what's going on with me. It's a lot easier than telling someone face to face or talking about it daily.
Maybe one of the reasons I have been met with this challenge is to help other people with the challenges they need to face.
It has definitely made me look at my life a little differently. If you ever find yourself feeling down and out make a list. Write down a bad thing followed by a good thing, bad thing, good thing, and so on...If your good things don't outweigh the bad things, call me....I'll help you out.
Have a great week.
Kris B
PS- How about those Packers and Badgers? What a great weekend to watch football!!!!
PSS - I had a wonderful weekend with my kids and my family.

Simmering Disease

Good evening,
This week has been tough.
Maybe because Bill traveled this week but I had help from my sister, my neighbor and my mom so I don't think that's it.
Maybe because I pushed my physical limits last weekend.
Maybe because my disease is simmering.
I have been uncomfortable for most of the week. Sometimes for no reason I feel a little dizzy. Today I had some pain in my arms and now that old familiar feeling of wet sand has returned to my arms. I continue to think tomorrow I'll feel better but today I realized a call to the doctor was in order. She said she has been watching my lab work and the muscle inflammation number went from borderline one month to slightly above where she's comfortable seeing it and she believes my "disease may be simmering". Today she put me back on prednisone. Just a low dose of 10 mg a day but I really didn't want to have to take it again. I have an appointment to see her and have additional lab work done on October 3rd. It will be at that meeting that we discuss and/or decide what the next step is.
Well, I am going to rest my aching arms.
Thanks for checking in.

Kris
Here's my quote for the day: "A hero is no braver than an ordinary person, but he is brave five minutes longers." -Ralph Waldo Emerson-

Jeremiah 29:11

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
This was the bible verse displayed on the back of the tshirt of a team of walkers raising money for Childrens Hospital of Wisconsin in the Briggs and Al's Run and Walk yesterday. Together the walkers and runners raised over a million dollars.
The back of the "Team Luebke" tshirt which we wore with great pride reads "This is the day that the Lord has made, we will rejoice and be glad in it." Amazing how a very young family going through a very hard time with their son can start every day with this bible verse and how the one little life of Nathaniel, with all our hopes and dreams and prayers behind him has made it easy to share God's love with perfect strangers.

I walked 3 miles yesterday. It truly wore me out, but I did it. I made it to the finish line. Although I am quite exhausted even today, I feel really great about this accomplishment and look forward to pushing myself to physical limits again and again.

Be thankful for everything you have, and everything you don't have.

Thanks for checking in.
More to follow...
Kris B

Happy, happy, happy

It has been weeks since we have had a home computer, therefore also weeks since I have provided you with an update.
Well, let me bring you up to speed.
September lab numbers just came in....
I talked with Dr. Cohen today. The muscle inflammation number is continuing to creep up. She gently reminds me that prednisone is what will help control that number and I keep doing my best to wait and see what will happen in the next months lab numbers. Some numbers report higher than they are suppose to be while others are lower than they should be but I am still feeling pretty good.
I said to someone the other day that I am working on getting over a "pass/fail" sort of feeling when the lab results come in. Really I have no control over that and I should focus and concentrate on those things I can control.
One of the side effects of the drugs and the disease has been weight gain. I recommitted recently to focus on those things I can control and guess what....
I chose what I put into my body. I went back to the support of Weight Watchers meetings and in three weeks I lost a grand total of 1 pound. I would be kidding you if this didn't disappoint me a little bit however my new mantra related to weight loss is "as long as it takes" I am in it to win.

My quote for you today is
"From a good beginning, all else flows." -Dan Millman, author and motivational speaker

For those of you who are fortunate enough to know my mom and dad, you know that they gave me a good beginning and it is from there that all else flows.
From there, the next good beginning came the day I joined my life to Bill's. This is not an easy time but we are holding on to each other and sometimes holding each other up. Many things can be thrown out of our boat to keep us floating but we've agreed it won't be each other.

Thanks again for checking in. Now that I have a home computer again I will be back sooner rather than later. Can I ask one more thing from you....please say a prayer for Nathaniel. He got his third bone marrow transplant yesterday and we pray it is the one that brings to him a long, healthy, happy life.

Kris

This past weekend I was together with my family (children, husband, parents, sisters, brother in laws, niece, nephew, cousins, aunts, uncles, etc...) and we prayed together for the life of my cousins four year old son, Nathaniel. We laughed and cried and smiled and golfed and ate and drank and spent money on great silent and live auction items. It was a weekend full of life, love, hope, faith, family and Jesus.
These things make up what is most important to me.
It was an amazing experience to stand among a crowd of people (family and complete strangers) and actually feel the power and strength and comfort that comes from this that we held in common. One little boy and the simple request of his mom and dad to pray for them brought people together from all over.
I took many things and many memories from this special day. One of those things was a small red and white rubber bracelet that says "Bravery". You know those bracelets that Lance Armstrong made famous, well, it's like that. The money donated for the honor to wear it goes to Aplastic Anemia and Nathaniels family.
What does bravery mean to you?
What obstacle is so big that you need "bravery" to overcome it?
I have a few things on my list. A few things that seem pretty hard, maybe even impossible (though you all know by now that I don't believe in impossible). I talked to my uncle at this event and we both commented on how we are looking at life differently with Nathaniel in our lives and prayers. The bad days don't seem so bad. The aches or pains or frustrations pale in comparison to what we pray for each day for Nathaniel and his family.
Please consider those things on your list that seem unbearable to overcome.
Decide which one would be life changing for you.
Pray without ceasing.
God is with you for each and every step it will take.
Be Brave.

Love,
Kris

Where in the world have I been....

I'm back.
Sorry. Too much time has passed and you could have assumed that I stopped blogging. That is not the case. I had a few computer issues last week and Bill was "up north" with Jake and Emma so I waited until he got home and here I am.
I am feeling pretty good.
However, that being said, just yesterday I did too much and rested too little and just like that I struggled today. When I say I struggle, in a nutshell my muscles feel tired (like I just got done with a race or a good work out at the gym). I drag myself around and do what needs to be done the whole time craving rest.
The kids were great again today. When I got home from work and dismissed the babysitter, I locked the house up, asked Emma and Jake to be really nice to each other so I could take a rest. Emma said..."mom, you don't have to set an alarm. I can tell time and I will come and wake you." What a lovely thing to wake up to the sweet voices of my children instead of the alarm clock.

Health Update: I saw the doctor last week. During the appointment she said she thinks my disease is "quiet". The following day she called with the lab results and the test that measures muscle was not "normal". That being said she decided to go with how I am feeling versus what the lab results indicate and leave my meds just as they are for now. More labs scheduled for a month from now and the next doctor visit for two months out. She indicated that she would like me to remain at a 30 hour work week until she sees me again in October.

I am still working on getting exercise into my day. It's been a challenge to do that at the end of the day after my energy has been zapped. That is not an excuse. I am going to figure it out and when I do, I will let you know. Blogging helps. It helps me be accountable when I've put it on paper (or in this case, documented via blog).

Guess what I did over the weekend....
I rode a bicycle. We were in St. Germain and Emma wanted to show me the "swimming hole" she and her friend Katherine visited during the week. We rode bicycles about a half mile down the road and back. It felt wonderful to be on a bike. It was scary how quickly I became exhausted. I am going to do it again, sooner rather than later. I am even beginning to plan out how I can train for a triathalon over the next year, working up a one mile bike ride to a 30 mile bike ride will likely take that long.
With that being said...here's the quote I want to share with you.

"Faith is taking the first step even when you don't see the whole staircase."
-Martin Luther King, Jr.-

Have a great day.
Thanks for checking in with me.
Kris

I am feeling really good. The other day when I wrote that I was going to rest for an hour....right.
I got up an hour later and Bill said "Go back to bed, I got it". Many times Bill needs to remind me how important it is not to push myself. We're in this together. Have I mentioned lately how blessed I am to have him in my life. With his encouragement I went back to bed and woke up the next morning refreshed and ready to go.
There is a little bit of adjusting going on right now in our home. The kids are no longer at Summer Camp so when I get home from work we needed to figure out how I was going to be able to rest.
Jake and Emma are wonderful. I lock up the house like Fort Knox and let them know there is no opening the doors, answering the phone, going outside or yelling and then I go upstairs and rest for an hour. They use the quiet time to read, do a craft or most likely catch up on "sponge bob" or other kid shows they love. It's really quite amazing what kids can and will do.
Tomorrow Jake has immunization for measles, mumps and rubella. We put this off at his four year appointment because of the high doses of prednisone I was taking.
Are you wondering what that has to do with my health?
Well, although it's been six weeks without taking any steriods, two of the medications that I am currently taking are immunisuppressive drugs. This means my immune system is suppressed. The MMR vaccination is a live virus so we will be saying a few extra prayers that I have what I need to keep myself healthy.
Other than that my next lab work and doctor appointment is August 9th. More medical updates will come at that time.

Here's my quote for today....
"Be faithful in small things because it is in them that your strength lies." -martha theresa-

Monday update

Hello,
It's Monday, early evening and I am exhausted.
I didn't rest yesterday and although I felt really good all day it caught up with me around 3:00 this afternoon. The kids were wonderful and agreed to stay in the house and watch a movie with me but none of us closed our eyes. When Bill gets home I will rest for an hour or so and then get back up so that I don't mess with tonights sleep.
I do feel good though. I think I may finally be feeling the full benefits of the methotrexate. The past three days I've walked down the stairs in the morning with much more ease and much less pain.
Not sure if I mentioned this before but since I returned to work a number of people have commented on how much better I look. This concerned me of course because I didn't think anyone could tell I wasn't well. Bill said it wasn't so much that I looked sick but I looked worn out. I guess it's better not to question a compliment.
This week I will continue to work from 8:00 AM -2:00 PM. I'm not certain how I am going to sneak a nap in there but I am confident that we will figure it out. That might be a good hour for everyone to rest and/or read books in their rooms.

I hope you all have a great week.
I will keep you posted.
Kris

YIKES

Sorry about the last blog.
As you will notice, I didn't do a very good job proof reading before I posted it.

This past week a coworker gave me the book "The Secret" by Rhonda Byrne.
I am only on page 16 but so far it's full of inspiring, "can do", words. In the early stages of the book it talks about the law of attraction. "When you become aware of this great law, then you become aware of how incredibly powerful you are, to be able to think your life into existence."
There is definitely something to this.
I know that when I wake up in the morning and say something like "oh I feel like crap" guess what?
If I start the day out with "thank God for this beautiful day !" guess what?
You guessed it. Thoughts are very powerful.
Since I got sick, I have been saying that I have this "feeling" that I am being called to do "something great". If only five out of a million people in the United States are diagnosed with Myositis each year, then it happened to me for a reason. That being said, I just opened up "the Secret" to page 84 and you know what it says....
"Our job is not to figure out the how. The how will show up out of a commitment and belief in the what." -Jack Canfield-

Health Update: I went to the doctor on Friday morning as I had a few symptoms that I was concerned about. Good news is everything is treatable and nothing to worry about. Here's the deal about autoimmune diseases, they like to outdo each other. Often a person with an autoimmune disease will get others. That is why it's so important to not ignore symptoms are push them off to deal with another day.
You only have on body and only one life so don't take silly chances, TAKE CARE.

I'll let you know how tomorrow is. I was going to give myself my shot when I got home from work but I was so tired I went right to bed. I'm disappointed in that as I don't want to spend tomorrow in bed while my family plays.

A lightbulb moment - When I wake up I will feel great and thank God for a beautiful day. I'll let you know how that goes.

Kris

Today is Wednesday, July 25th.
This morning I started my morning with a "wellness" program at work. It was a class on strengthening your core. It was difficult to be in a group with my peers and not be able to do all the exercises that the instructor was showing us. I suppose not everyone needs to know what I am dealing with. I am fairly certain no one else cared what I could do or what I couldn't do but it sure would make it a lot easier for me if everyone knew. It's not a secret of course but it doesn't come up in casual conversation either.
After each wellness session we are asked to provide ideas for future classes. This provided a great opportunity for me to share my insights on the importance of collecting your family health history.
Have you done this yet?
Start.
Start with something, yourself, your children, your parents, somewhere. I'll continue to noodle on how to create a template for that. Once I figure that out I will email to my distribution list and then everyone who receives it can do the same thing.
On Friday morning I am going to see my doctor. I am having a few stomach issues. They are probably nothing and are most likely related to all the medication but she wants to see me none the less to rule out the possibility of an infection. Two of the medicines I take are immunosuppressive drugs which means that my immune system is compromised. I am not too worried about it though I do feel a bit crazy having to call the doctor about every questionable thing.
As I mentioned, today is Wednesday. On my list of things to do today is a day for a cardio activity. I figured if I wrote it down I would be accountable so, off I go.
It's 8:15 PM. It's very humid outside but I am going for a walk.
I was trying to find a quote to write down without having to leave my computer. Here's the ABC's I have on a plaque in the kitchen.
Accept difference-Be kind-Count your blessings-Dream-Express thanks-Forgive-Give freely-Harm no one-Imagine more-Jettison anger-Keep confidences-Imagine more-Master something-Nurture hope-Open your mind-Pack Lightly-Quell Rumors-Reciprocate-Seek wisdom-Touch hearts-Understand-Value truth-Win graciously-Xeriscape-Yearn for peace-Zealously support a worthy cause.
Good Night.
Kris

Sunday, July 22nd

I spent the majority of the day in bed today. I believe it is the effects of the methotrexate injection yesterday but will keep track via the blog entries to see how I might be able to improve this.
Yesterday I gave myself my injection at 6:00 PM.
Met some wonderful friends out for dinner. It had been way too long since we were out with this group of people and I wouldn't have missed it for the world.
We were home by 11:30 and I was in bed by midnight.
Either seven hours of sleep was not enough or it was the medicine or a combination of both because although I attempted to get up and get moving that lasted all of about an hour and a half and I was back in bed by 9:30 AM. Most of you know this but it never hurts to appreciate someone in public...Bill is wonderful. He tucked me in and took our kids and kept them entertained the entire day. I tried to get up and participate in the day a few times but I kept giving in to the fatigue and going back to bed.
During one of my brief awake times I had a wonderful visit with my cousin Tammy and her husband. They stopped on their way back from Chicago where they met their beautiful little son and took pictures and told them they would be back to take him home when he weighed 4.6 lbs.
He is 3 lbs 15 ozs today so it shouldn't be too long. That is another moment I wouldn't have wanted to miss.
With all of that being said, I think next week I will give myself my shot when I get home from work on Saturday (early afternoon) in hopes that the crappy fatigue time will fall on me while I am suppose to be sleeping and not ruin time that is suppose to be with my Bill, Emma and Jake.

My quote for today is a bit long but a great way to start the week.
May the sun bring you new energy by day.
May the moon softly restore you by night.
May the rain wash away your worries.
May the breeze blow new strength into your being.
May you walk gently through the world and know its beauty all the days of your life.
-apache blessing-

Two in one day....WOW

A second blog in a day...
I just got back from my evening walk and I was so excited to tell you what I saw that I couldn't possibly wait until tomorrow.
The first thing I noticed is all the different kinds of daylillies that are in bloom right now. Then I noticed the fingernail moon. If Emma had been with me she would have insisted on calling her Grandma and bringing it to her attention. That is something special she shares with Grandma Barger.
About a quarter of the way through my walk I noticed an older rusted car in a garage and I commented to the older rusty man in the driveway that he had quite a treasure in his garage. He told me it was his dad's 1931 Buick. I mentioned that Bill and I have a 57 MGA and he said he once had a 1961 Healy. "It was a great car when it was running" is what he said. I asked him if he had been to the "Classic Car Night" at Pandls on Tuesday evenings and he was not aware of it but thought he might check it out. As much as I needed a little break in my walk, I think he was glad to have someone share a few friendly moments with him.
OK, about half way through my walk I found myself grumbling about how bad my feet ache. Not sure what that's all about but I am glad to have had a recent bone density test with results that indicated I have strong bones otherwise I would have kept myself awake thinking that my feet might crumble before morning.
On the final stretch I saw two young girls (maybe 7th or 8th grade) riding there bikes and talking. I was reminded of my friend Chrissy and the path we wore through Biemert Street biking back and forth to each others houses. Chrissy was my best friend and we remained friends in grade school and high school and even through college. Although I thought of her often I bet more than eight years passed by and I didn't bring myself to find her and get in touch. I saw her last Monday night at her mom's funeral. I wish I wouldn't have waited.

My message to you tonight is don't wait.
Don't wait to go for a walk.
Don't wait to share a kind word with a stranger.
Don't wait to call that friend you've been thinking about.
Don't wait.

Good Night.
Kris

Busy, busy, busy

The first two weeks back to work have been a whirlwind. Quarterly reviews, donation and sponsorship requests and marketing request for our next fiscal year all had a deadline of this week. I have three of the four completed so tomorrow will be another very busy day. The naps take on a whole new meaning now.
A big hurdle I have to overcome right now is finding the right time to exercise and do my physical therapy. As I typed that I remember an earlier blog where I was going to look for the beauty in a evening walk versus a morning walk. No better time than today, right?
It's 8:00 PM, the temperature is perfect and there is very little humidity this evening. Do you think God might be trying to tell me something.

I'll blog more tomorrow and let you know what I see.
Thanks for checking in.
Kris

Kid Quotes

This is week two back to work. I am continuing this week with five hour work days and feel pretty good about what I have been able to dig into.
One of the many wonderful parts of my job is finding artwork to rotate through our branch on a quarterly basis. This next quarter (July, August and September) we are featuring the talents of MPS students and their amazing art teachers.
Here are a few quotes that I am going to share with my office. They are currently in frames in the kids playroom.
"A friend is someone who helps you up get up when you fall down." Rachel McCullough, Age 9
" Kiss me when I'm bad. That's when I need it the most." Maura Stuard, Age 9
" Life is about who you love." Anna Yu, Age 12
" People are suppose to make mistakes. That's why we have erasers." Brittany McMahan, Age 8

Here is a brief health update.
Naps continue to be important. Although I felt pretty good when I laid down to rest on Sunday after church I slept for nearly four hours.
The last few days I have had a few dizzy spells. I haven't fainted but have felt faint. I left a message for my doctor and although she tried to reach me three separate times today we never connected. I am sure we will touch base tomorrow and I'll see what she has to say about that.
While in line the other day at the pharmacy I was able to ease the mind of a man who would be starting methotrexate injections. It was one of those moments where you ask yourself...should I say something? If I do, he will know I overheard the conversation. If I don't say something, he walks away nervous and scared. I said something and he seemed very appreciative of the shared experience. I hope it goes well for him.
Regarding the injections. The site of the injection is quite uncomfortable for about 24 hours after the injection. I don't think it's the needle, I think it's the actual medicine thats burning.
Time will continue to tell.
Patience will continue to be important.
Prayers will continue to make me strong.
Thanks to all of you.
Kris

The home computer has provided quite a challenge for me this week. Only when it wants to it provides the little arrow that shows where your mouse is. Right now it's not working so you can only imagine how long it took me to get this far...
I have been back to work for four half days this week (I've been working 5 hour days) and I am exhausted. A good tired, I am not complaining. I receive a lot of joy and satisfaction from my career and the wonderful people I work with and for.

Right before I left the office I ask my coworkers to be prepared to learn new information and new ways of accomplishing tasks. I asked them to keep track of those things or have at least one valuable new thing they learned to tell me about upon my return. Tomorrow I am going to ask them to share that with me. Here the practice run on just a few things that I have learned while I was out of the office.

I learned that it is really important to listen to what my body needs and then follow through.
I learned how to give myself a shot.
I learned that I have a very strong spirit.
I learned that there isn't enough time in the day or days in my life to spend time being negative. It makes me feel bad, physically, mentally and spiritually and I definitely don't need that.
I learned that having the energy to be active with my family can bring as much joy (MORE) than running across a finish line alone. ( I haven't lost my desire to cross a lot more finish lines in my life)

I learned a lot more but those of you reading this learned that about me along the way so these are the first five things I could think of.

My quote for the day "A woman of strength has faith that it is in the journey that she will become strong."

Thanks so much for checking in. I am sorry that it took me a week to get back here.

I'd like to know what you think? 2nd try...

Sorry about that. My fingers were flying on the keyboard and they hit something they weren't suppose to. So let me try again.

What do you think I should do?

I'd like to know if I should tell my guests I am going to bed or if I should just quietly slip away. I prefer to slip away. The reason for this is because I don't want the party to end because of me. However, last night I laid in bed listening to our friends and our kids light off fireworks in our yard and I hoped and prayed they didn't think I was rude for not joining them or for going to bed without saying good night. Some of you have been at our house to be on the receiving end of this so I especially hope you will let me know. If you prefer to not put it on a public blog, you can always email me at home too. Thank you.

Today I pulled down the family calendar to make sure all bases were covered before I return to work on Monday. When I took it down I noticed a piece of paper I had taped up there around Christmas time.
I think it came from an email reminder I get from "the flylady". Here it is...I hope you enjoy it.

God grant me the serenity
to accept the things I can not change;
courage to change the things I can;
and wisdom to know the difference.

When I got home I looked up the Serenity Prayer and read that first verse and then I saw that there was a second verse. I was so surprised.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next
Amen.

--Reinhold Niebuhr
Merry Christmas! My gift to you; if you choose to open it, is a sense of peace that comes from making a choice to be happy!

Have a wonderful day.

I am chosing to be happy.
Kris

I'd like to know what you think?

Lemonade and Cards

The last couple of days have been hard. When I do more than I should (like summerfest) it takes days to recover. I cancelled my physical therapy appointment. There was no way I could have successfully completed even one set of exercises. When the therapist called to check in on me and reschedule we discussed how I was feeling and what I would do differently the next time.

I used to love exercising in the morning. For years it's been an awesome way for me to start the day. Everyone in the house is still sleeping, the neighborhood is quiet, the sun is coming up over the lake.
She suggested I find joy in exercising after dinner. Since I have been off of steroids I am very stiff and achey in the morning. The walk is painful not pleasurable and she is also concerned if I exert that energy in the morning before work it will make being at work more difficult. I did commit to stretching in the morning and doing physical therapy exercises as well (total that takes just over 30 minutes). This will be a nice alternative to my morning walk (bonus....I can do some of it while still in bed and ALL of it while still in pajama's) I look forward to finding and reporting to you the great things I have come to realize when walking at night. She did say it was OK to take my bike out for a ride but I have to build my courage back up for that. I know, I know..."its like riding a bike"

Now what is it about lemonade and cards...

A couple of weeks ago I watched a video clip of a woman who also has Myositis. One of the things she said is "all those old sayings are true"
"When life gives you lemons make lemonade."
"It's not the cards your dealt but how you play them."

In my opinion, she couldn't have been more right.

Have a great day.
I hope you find joy everyday but tomorrow I hope it comes through a celebration of the personal freedom you have for those things that mean the most to you and the freedom we enjoy together as a nation.
God surely has blessed America (and me)
Happy Fourth of July.
Kris

Too much

Remember the other day when I wrote about how Summerfest was just too much walking, dancing, etc... for me to go. Sunday was a beautiful day. The sun was shining and it was about 68 degrees outside. Temptation won (and my sister Vicki had free admission) so we took the kids down and guess what? It was too much walking, though we didn't dance and I really thought I was taking it easy. Today I am wiped out. I have a physical therapy appointment this afternoon and she will either congratulate me on being active with my family for 4 hours or remind me that feeling good one day doesn't mean cashing in all my "fun chips" on one activity.
As wonderful as it would be to go down in the evening with Bill and our friends, I learned my lesson. I have to take care of myself first.

Thanks for checking in.
I have to go rest now and try to make up for yesterday.

Keep Pedaling

OK, now for the bike pedals.
Again I go back to a troubling time in college (I did eventually graduate) when I looked to my mom and dad for help, comfort, advise, etc... amazing that even though I am now grown up and a parent myself I still call on them from time to time for help, comfort, advise, etc... I hope Jake and Emma grow up knowing their mom and dad will always be there for them. Hopefully they will grow up seeking our wisdom. OK sisters of mine, stop laughing.

When you ride a bike what moves you forward?
Pedaling
When you ride a bike, what keeps you upright?
Pedaling
What happens if you stop pedaling? Not sure which is worse, falling over or coming to a stop.
Such it is with life.
Don't stop pedaling. You won't get where you want to go. You'll stop moving forward.

Keep Pedaling.

It's amazing when things are rough and I hear "keep pedaling" I realize how far I have come and how much more I have to see and do and experience.

Keep Pedaling.

Kris

PS - dad and mom, that's how I interpreted your advise and what I've held on to over the years. Did I get it right? Is that what you meant? Love you both.

The wait is over...

The wait is over...
This afternoon I received the "all clear" from my doctor to return to work on July 9th. There are limitations. I will return to work restricted to five hours a day for two weeks. At that point the doctor and I will discuss how I am feeling and she will increase it to six hours a day. We will see where we go from there when the time comes.
My bone density results were awesome. One of the negative side effects of long term steroid use is the effects on your bones. Mine have not been effected negatively. The doctor complimented me on my exercise before I got sick and my desire to continue to be active. She said she is certain that it worked to my advantage over the past year.
If you are not active, start now. Your bones will thank you for it.

I also received a new medication to offset the side effects of the methotrexate. I will increase the folic acid on the morning that I give myself my shot. I will not give myself an injection until the evening and I will take a new drug called ___?___ (the prescription is in the car) the morning after the injection. Also moving the injection date to Saturdays so that if I'm going to feel like crap I can rest on Sunday. That's what Sunday's are for anyway, right?
Regarding the pain and stiffness I have in my knees, feet, hips, back and neck...could be the disease or it could be steroid withdrawal (not adrenal suppression). I told her it is absolutely not bad enough for me to go back on steroids and she said that if it is steroid withdrawal I should feel better in a couple of months.
So, that's probably all the medical stuff you care to hear for awhile. If I continue to feel good my next lab work will be done in a month (as it has been for the past year) and my next doctor appointment will be in 6 weeks.
Thanks for checking in.
Kris

Thursday and detours...

Good Morning,
It's Thursday and a lot is happening today. I have a bone density test at 1:00 PM, other lab work to follow and then an appointment with Dr. Cohen my rheumatologist at 2:30 PM.
I feel as though I am ready to return to work and I hope that the test results and her expert opinion are all lined up for that to happen. It's now been almost three weeks since I have swallowed a steroid and although the aches and discomfort have increased it's not what it was at this time last year and it is certainly not bad enough to go back on the them.
The side effects of yesterdays injection are the same as weeks past. I am more fatigued than usual today but happily no throbbing headache. While at the doctor today I am going to inquire on changing the injection day from Wednesday to Friday or Saturday so that when I return to work this effect won't slow me down or keep me out of the office.

Detours was the next item on the list.
Do detour signs make you smile? Of course not, at least not yet.
Many times in our lives we will be cruising along with a destination in mind and out of no where, with no warning a detour pops up. I recall one such detour during college. I applied for the school of education and I wasn't accepted. I was devastated and you know what my wise parents said..."Kris, it's just a detour. It doesn't mean you aren't going to get where you want to be, it just means it might take you a little longer to get there. Don't forget to enjoy the unexpected change in the scenery." I am not a teacher, well, not a traditional teacher. I do however have a very important teaching position in life, Jake and Emma and anyone else watching. The unexpected change in scenery is beautiful.
Enjoy life's detours. They were put there for a reason.

Have a great day and thanks again for dropping by to visit with me.

Kris

Hawks

Good Morning,
It took me a little longer to find what I was looking for regarding hawks, but here it is.
I copied and pasted from my cousins wife Michelle's journal entry from March 14th of this year.

"When I was attending UWGB I had a Cultural Diversities course where our Indian Professor shared the significance in their culture on Hawks. She told the story of how she went for a walk and was contemplating whether or not she should join the Peace Corps. When she saw a hawk fly above her and she knew her answer was to join. In that culture if a hawk crosses your path it is a sign of everything will be okay. I applied that moving story to my life. You would not believe how many times I have seen hawks just when I needed to see them."

Many journal entries that kept us updated on their son's health contained amazing hawk sightings. I would bet, that if you applied this theory to your life you would be amazed not only at the number of times you are consumed with worrisome thoughts but then how often you are sent a "winged reminder" that everything will be okay. I know I have.

I believe it is our responsibility to share words of encouragement and hope whenever possible. You just never know the situation of the person on the receiving end.

SMILE ON.

I'm alright

Good Morning,
I went for a walk this morning and tuned my ipod into my favorite singer/songwriter, Phil Vasser. He wrote a song called "I'm Alright" (I think he wrote it for another artist)
The chorus is "I'm all, I'm all, I'm alright....it's a beautiful day, not a cloud in site, so I guess I'm doing alright." The song just makes me smile.
I am alright :0)
Not sure if you read my sister "Roo"'s comment on the last blog post but this Thursday is opening day of Summerfest. Phil Vasser will be performing at the Briggs and Stratton Big Backyard at 8:30. In years past I have been there with Bill, our friends Kim and Joe, my sister Vicki and others.....I will miss that this year. Summerfest requires alot of walking and standing and dancing and although fun, it wouldn't be the wisest way for me to utilize my energy.
The theme of this years 40th anniversary of Summerfest is "Smile On". That's perfect.
I shall "smile on" and I hope you will too.
Thursday also marks my next doctor appointment. I will have a series of tests done and it is my hope that together my doctor and I can decide when I can go back to work. There is the possibility that I will be able to wean from another medication called Imuran (azathioprine). I am not sure the side effects of that but I will be sure to get the details and let you know what I can expect.

Quote for the day:
" If you don't scale the mountain, you can't see the view." - Author Unknown-

I believe I owe you a few bits of information regarding hawks and bicycle pedels and other items of that nature. I will work on that later today. Check back in when you have a chance.
Take Care.
Kris

Just ask...

Good Morning.
I haven't fallen off the planet. I am logging in from my sister Sherry's house in Minnesota.
As hard as it is to admit, or say out loud, I don't have the energy level needed to keep up with Jake and Emma now that they are out of school for the summer. A plan is in place for them to start summer camp through an area park and recreation program next week but this week needed a solution.
Pride went on the back burner and I asked for help.
Guess what happened? I got help.

1. My mom and dad took care of the driving
2. My sister and her family and grandpa and grandma are taking a wonderful role in creating some awesome summer memories for them.
3. I am resting when I need rest
4. The kids are having a wonderful time

I've had to ask for help more times than I can count over the past year and although it isn't always easy, it has always worked out.

Please don't be too proud to ask for help and support and certainly don't wait until you get sick or are so desperate you have no choice in the matter. If you were meant to do everything by yourself then what is your family for or why were you blessed with those wonderful friends or great coworkers or a supportive church (the list could go on and on) The people that love and care for you really do want to help out. If you have a minute take time to review the lyrics from the song "Lean on Me" this week. I think if you do a google search on "song lyrics" you should be able to find them. Don't hesitate to call me if you need anything. Have a great day.

Kris

Quick update

I saw Dr. Cohen this afternoon.
Apparently the pain in my toe is indeed osteoarthritis.
She proposed two solutions: cortisone shot to the toe or a 5 day zap of prednisone.
We decided that because I was weened from oral steriods less than a week ago that the shot was the way to go. To add to the excitment, I had Jake and Emma with me. Great opportunity for me to show them how shots are not bad. I put on my brave mommy face and they watched the doctor with great interest and enthusiasm. It was fun to hear them give Bill the play by play report when he got home. They were really very excited about it and reported how brave I was. They were so proud of me.
The toe does not feel great right now but I was assured that by tomorrow I would be walking comfortably again. No ballet dancing though per the doctor. That won't be an issue.
Still hoping to find a good deal on Dansko sandals while in Minneapolis next week.

Thanks for checking in.
Kris

FROGS

I never really did like frogs. Doesn't matter if they are the real ones or decorative ones they just never struck my fancy... until I looked at them with a different set of eyes.

My cousin Kevin and his wife Michelle recently had asked friends and family to pray for a little boy named Antonio and his family. They met Antonio while they spent time at Childrens Hospital here in Milwaukee with their son, Nathaniel. Families at Children's Hospital are given the opportunity to set up a "Caring Bridge" (blog) to keep people up to date on the progress of their childrens stay at the hospital.
In Antonio photo album on his "caring bridge" blog he always had frogs in the pictures they took of him. Big frogs, little frogs, frog pillows, frog flags, (you get the picture) This little boy loved frogs.
Do you know why this little boy loved frogs? For Antonio and his family frogs brought strength and courage and comfort.
FROG to the Perez family meant: Fully Relying On God.

Well, I will never look at a frog with yuck or disgust again.

Here is another every day thing that might cross your path on a crappy day and you will be reminded of what FROG's can mean.

Have a lovely day.

I have this quote in my office at work.
To work people reading this....I miss you.

"The real voyage of discovery consists not in seeking new landscapes but in having new eyes."
-Marcel Proust-


on a separate note - I wore tennis shoes the last two days and my toe feels better. I had an appointment with my physical therapist yesterday she looked at my toe and suggested I see my rheumatologist regarding my toe and another weird symptom I have. My skin hurts. It's too hard to explain but if my doctor has an explanation I will let you know more after I see her.

Ouch

I've had an ache in my big toe for a couple of months now. Today, however, it was worthy of a trip to the doctor. Could it be the steriods were hiding something? I am willing to tolerate a certain amount of pain in exchange for not taking steriods but I am hoping there is another solution. I had an x-ray done. I will know more tomorrow.
The doctor said it is likely osteoarthritis, could be a bunyon, could be gout (but she doesn't think so because it isn't bright red). There is definitely inflammation.
Her advise until the results are in: Ibuprofen, keep weight off of it, and check out Stan's (good for your feet store).
Shoe shopping, per the doctors orders, what could make a woman happier?
A sale at the shoe store could make me happier, that's what. I'm not used to spending so much money on shoes and then to try and figure out which ones will go with everything because there is no way I am buying more than one pair.
I'm waiting. It is very likely that I will be receiving a cortisone shot in which case my cute shoes and even my not so cute shoes should do just fine.

I told a dear friend I would look for a quote regarding "change" for today. I didn't find what I was looking for but I found this:

"Eat a live toad first thing in the morning and nothing worse can happen to you the rest of the day" -author unknown-

Tomorrow I will tell you about the frog.
Have a great day. Thanks for checking in.
Kris

A whole day without steriods

It's been over a year that my body has been fed steriods.
Yesterday, June 10th...NO STERIODS, YEAH !!!!!
You might be wondering how I am feeling?
BLESSED would be the most appropriate response.
(as a side note though, there is a bit of muscle fatigue going on)
I'm not sure if it was the change in medication but I could not sleep last night. Have you had those nights where you lay in bed, your body is exhausted, you know you need to sleep and your mind won't shut off? That was last night for me.
Here's some of what I couldn't stop thinking about....
bumble bees, frogs, hawks, detours, bicycle pedals, lemonade, a deck of cards...I am sure there were more but that's a start.
I know many of you know what these things are about but if you don't I will fill you in, one item each day until I run out.
Bumble bees: Did you know I have a bumble bee tattoo? Some might ask "why a bumble bee?" others might ask "WHY A TATTOO?"
A couple of years ago when I was asked by my younger sister to do a triathlon with her I picked up a book and began to read how someone like me might accomplish this type of a goal. In the book I read that aerodynamically the bumble bee should not be able to fly. Apparently, scientists have studied this and based on the size and weight of the bees body those wings should not be able to carry it into flight. The statement was something to the effect "Lucky for us no one ever told the bee that." I find that to be a very inspiring fact.

Quote for today: "Nothing is impossible to a willing heart." -John Heywood-

Have a great day.
Kris

It's Friday

Hi everyone,
I didn't post anything yesterday because I was wiped out. I need to continue to keep track of activity as I am not sure if it was activity or the methotrexate that zapped me of my energy. Good News, it's Friday and I am feeling much better.
Did you happen to pick up the book "Lean on Me" by Nancy Davis?
Not only is she mom, wife and author but she is the founder of "Center Without Walls".
She recognized that doctors and researchers were all working on really important stuff related to MS but they weren't talking to each other.

How much stronger is a rope of strings braided together than the strings independently?

The other night I read on the Myositis bulletin board the exciting words of a woman announcing she was pregnant. I couldn't stop thinking about her and what I might know that could help her and her doctors to bring this new life into the world safely. So, I emailed Johns Hopkins new Myositis Center as well as the Executive Director of the Myositis Association and the Chairman of the Myositis Associations Medical Advisory Board. I asked how I might be able to help get rheumatologists, perinatoligists, OB/GYN's and internal medicine doctors talking and solving the challenges this woman (and others) may have in front of her.
I'll let you know if I get any feedback.
Have a great week-end.

Here's my quote for the day:
"The more I give to thee, The more I have..." William Shakespeare.

My Grandpa Gulbrand wrote words very similiar in a letter to me when I was in college. I wonder if he knew he was quoting Shakespeare?

Kris

Put it all into perspective...

Hi,
I was feeling sorry for myself a few minutes ago. On my way home from dropping Jake off at daycare I envied the people riding their bikes and running. Just two years ago I was running, biking, swimming, and enjoying the excitement of triathlons. That's when it hit me...let's put this all into perspective.
I am not running, but I can walk. I can't walk a 5K but I can walk around the zoo and to the ice cream store with my kids and I couldn't do that last summer.
I am currently able to do one set of 10 arm exercises with three pound hand weights. In April, I could only do three reps. Last summer I wouldn't have been able to close my hand to hold a hand weight.
My goal in this is to live my life as an example for Jake and Emma and anyone else watching. I will show them strength, courage, perservance and what a positive attitude can do for a person.
Today, I hope you are able to put those things that get you down into perspective.

What a blessing today is!

Quote for today:
"Faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1

Kris

Sunday funny...

This morning in church, just after Pastor Henrichs started his sermon Jake leaned over and said "mom, can I tell you something in your ear?" I responded "Quietly." He said "Isn't that so funny, Jesus spoke to the juice!" (Jews).
It makes me smile to think about it.
enjoy.
Kris

Did you know...

Did you know that autoimmune diseases are genetic? The following is information I cut and pasted from www.aarda.org.

4. Know that autoimmune diseases run in families. Current research points to a genetic component in autoimmune diseases. However, autoimmune diseases are not typical genetic diseases like, for instance, sickle cell anemia, where there is a specific gene mutation. With autoimmune diseases, multiple genes are involved that collectively increase vulnerability or susceptibility. Thus, what is inherited is not one specific gene but several genes that increase risk. As a result, autoimmune diseases tend to “cluster” in families - not as one particular disease, but as a general tendency to the autoimmune process and, consequently, different autoimmune diseases. For example, one family member may have autoimmune hepatitis; another, celiac disease; another, rheumatoid arthritis.
5. Do your own family medical history. Given the family connection, knowing the health histories of other family members is critical. For example, if your grandmother or father or sister or uncle has an autoimmune disease, you could be more susceptible to developing one yourself. Take an inventory of your family health problems, expanding your research beyond your immediate family to include grandparents, aunts, uncles, cousins and other relatives. Once you know your family history, share it with other family members and your doctor who can then assess the possibilities with a degree of accuracy and order appropriate tests.

This became somewhat of a conversation piece within the "Luebke" family over the past year as we found out that autoimmune diseases don't just effect you as you get older but can attack even the very young. We're positive. We are positive and full of faith and hope. GO TEAM LUEBKE.

I would encourage you to read more from the website, www.aarda.com and begin your family medical health history documentation. I'm not sure the best way to collect all the information but I am sure someone reading this has the answer to that question. Let me know your thoughts.
I just told Bill that putting a few great minds together we might be able to create a survey or guide to provide to family members to assist in collecting and then sharing the information with each other and their doctors. Once the bugs are worked out we can share it with others that have lives effected by autoimmune disease.
OK, that's enough for a Sunday afternoon. I was lead down this path this afternoon by a conversation I had at our church picnic. A friend told me about Dr. Weil and his "anti-inflammatory diet". The picnic got rained out around 2:00 PM and immediately upon walking in the door Jake asked if he could play on the computer. He loves the computer.
It took awhile (hours) for "my turn" but once I got my chance at the internet I found a lot of interesting stuff.
Have a great week.

Almost forgot my quote for the day:

"Faith can give us courage to face the uncertainties of the future." Martin Luther King Jr.

Take Care.
Kris

A new change, a good sign....

I just got off the phone with Vicki Jacobs, a Physicians Assistant from the endocrinologists office. We have a plan for getting off steriods. YEAH.
As many of you know, I have been on steriods for over a year now. A couple of months ago I changed from Prednisone to Hydrocortisone. My body tolerated the change and two weeks ago I reduced the medication from 25 mg daily to 20 mg. The biggest change was that I no longer had to take the steriod at night. I believe that has helped some of my sleeping issues (inability to sleep).
Starting tomorrow I will reduce the medication to 15 mg daily and if my body tolerates that change I can stop taking it completely on Sunday, June 10th. He actually said a week but we'll be camping and if I am going to have any serious side effects I prefer to be close to home rather than in a tent.
I'll keep you posted.
Kris