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.