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

Live and Learn

Yesterday was a really good day. After completing my daily dose of physical therapy (one day I work on my arms, abs and neck, the next day my legs, abs and neck) I decided to take a 15 minute walk around the neighborhood. Our neighbor Mary was just starting her daily walk so we walked together. I'm pretty sure we walked longer than 15 minutes and I am absolutely sure I walked at a quicker pace then I would have if I had been walking solo. It was wonderful.
Jake and Emma have swimming lessons on Thursday afternoons and I have been using that time to get in the pool and do some water walking. I walked for 10 minutes. (I love lap swimming, that activity is not yet approved by my physical therapist).
Here's my live and learn:
When I'm feeling good I have to be very careful not to over do it. Today I am pretty beat (fatigue is higher than normal). The great news is that I can take a nap and I am listening to my body and I am learning. Until I get stronger 15 minutes of exercise type of activity is my limit. When I think it's time to increase that, it will be in shorter intervals, maybe adding two minutes instead of ten would be a smarter choice.

That's all for now. Thanks for checking in.

Here's my quote for the day. It's from Nancy Davis, author of "Lean on Me"

"Move forward every day; seek new ways to build strength and confidence in your journey toward health."

Kris