November = Thanksgiving

At work we have an awesome wellness program. We are encouraged to participate in wellness campaigns throughout the year that revolve around healthy living. Exercise, what we eat, and the month of November is all about thanksgiving. Not the holiday, but being thankful and grateful. You know, the funny thing is I never can figure out the right spelling for grateful. Is it grateful or greatfull? I really do know the answer, but I wonder why it isn't the second one?
Being grateful is about appreciating what is great, right? Full of gratitude.....ahhhh there is the answer, grat(itude)/grat(eful).
The goal for this months wellness campaign is to keep a gratitude journal. I love this idea and I decided to start one for our house. This is community journal that can be used by me, by Bill, Emma and Jacob but also by family and friends who visit.

The first page of the journal says this:
This journal is for all of us. Spending a few moments each day reflecting on what is good, what is right, what brings joy to our life is so important. My hope is that together we create a book of memories and moments to share with family and friends for many years to come.

Page two:
Not a day goes by that I am not thankful for the love of my husband. From a moment and a song, a friendship bloomed and grew into a love, that started a marriage and a family, two beautiful children and a life together that is still growing....the best is yet to come.

Do not worry about tomorrow: God is already there.

I hope that when you visit our house you pick up the journal, take a look and even add a few words of your own.

I am grateful for you!

Just one very small part...

Today after work I went to a funeral for a coworker and it got me to thinking that myositis is really such a very small part of who I am. It's an adjective but just one of many ways to describe me and I think it's time for it to take a back seat. There are so many other ways I would like someone to think of me.
Here's what I learned from my coworker...she was sick but it wasn't who she was. She came into work, she did her job and she did it very well. She was brave. She was courageous. She was lovely in the face of a great challenge. When I think of her, I do not think of the condition of her health, it's all those other great words. It is not cancer.
Do my actions reflect the woman I want to be? Am I a strong role model for my kids? What are they learning from me? Are they learning how to be a compassionate sibling? Are they learning to love unconditionally? Are they learning to believe without seeing?

Faith...Hope....Love!

Not a smooth transition but I don't want to start a whole new entry...
I am working on a letter regarding the myositis walk that was held over Labor Day weekend at Nicolet High School. It will be mailed to all participants, donors, etc....I do feel terrible for the delay and it certainly is not a reflection of a lack of appreciation. It's hard to put into words what that day meant for me, but again, it just a very small part....one day in the life of a woman blessed over and over again.

This week...

This week I see my rheumatologist (Thursday morning) and the timing couldn't be better. I have missed some work over the past few weeks due to fatigue and I absolutely have a really hard time with that. I know I can work full time but I also need to rest when my body tells me to. If that is a few times every couple of months, that's better than not working, right? I love what I do and I don't ever want anyone (my boss, my kids, my husband, my family, my friends) to feel like they are getting the short end of stick. I guess it is what I make of it. It is what it is, or it's the "story" I make of it. I am hoping and praying that she will want to try a new form of treatment called Rituxim. Although it carries with it no guarantees, many people with Myositis have found relief that lasted months, not just days or weeks.

I was glad I went and look at my last few posts because one recently was me getting mad about being tired and sore and I was just going to do what I wanted to do even if it meant cashing in the energy chips. This past weekend I did just that. I played with my kids, I went for walks, I swam... all in the beauty of the northwoods. No phones, no computers, no clocks (well, there were actually clocks but none of them had the right time on them). Monday I tried to go to work. I made it four hours and went home and rested the next 16 hours. This morning was still hard but I made it through the work day and tomorrow will be better.

The other thing I am working on is the 2nd Myositis Awareness Walk/Fundraising. Last year I had 75 people walk , we raised about $3500 and walked 146 miles together. This year I hope to double those results. More details will follow but for now
.....please mark your calendars for Saturday, September 3rd from 10-12 at Nicolet High School in Glendale, WI.
If you have anything you would like to donate to the raffle please let me know.
I hope you can make it.

Kris

Really....there's no more room!

The results from the thyroid test came back normal so I won't be adding any medication for that however, my estrogen levels are low (probably because of the series of drugs I have taken) and the solution for that, another doctor appointment. This time to see my ob/gyn and probably estrogen replacement therapy (more meds) And medication to delay osteoporosis and Vitamin D3 and the medication I want to take because it has helped other people who actually have myositis I can't take, at least not now. We will look at that option again when I see my rheumatologist on August 4th. Really, there is no more room in my pillbox. Really, I am only 42 years old and I feel like I am 84.

So, my solution...I am getting mad and I am getting even. I am not going to sit around and feel like crap so I got home from work, put my tennis shoes on and went for a walk with Jacob and Star. If I am going to ache and I am going to be exhausted, I am going to do the stuff I love to do. I am not going to stop fighting to feel better. Trying to stay positive. Today is hard but tomorrow is another day.

On a side note, I was just looking at our family calendar and it is crazy busy so I decided I better put a date on the calendar for the 2nd WI Myositis Walk. Please pencil in Saturday, September 3rd (this is super tentative because another Myositis Member is helping me and we haven't been able to connect). I know it's Labor Day weekend but I am hoping if we can do it right away on Saturday morning (like 9-11) it won't take away from your other plans for the long weekend.

First things first

Today I saw an endocrinologist and she said I have secondary adrenal insufficiency caused by years of taking steroids. The treatment is 5 mg of prednisone forever. I also learned that if I ever get sick with a cold or infection I need to double the dose until I feel better. If I ever get the flu, and am throwing up or can't keep anything in, I have to go immediately to the ER and get a stress dose of hydrocortisone.

In addition to that update, she ran more lab work and question why I ever stopped taking the medication for hypothyroidism. Not sure, just had a doctor tell me I didn't need it anymore so I stopped. Hypothyroidism doesn't go away. She suspects that the tests will come back and I will need to start medication for that too. This might be the cause of the fatigue. If the new meds don't help, then she thinks we can look at moving to the rituxen for my myositis. She also recommended that I start a low carb diet as I am predisposed to diabetes and bone density issues because of all the medications I have been taking over the years.

With all that being said, wouldn't it be nice if the change to my diet helped me lose the weight I have been trying to shed over the past 5 years. Wouldn't it be cool if it was just my thyroid that is causing fatigue and muscle aches?

I'm good. Taking each day as it comes and being thankful for my friends, my family, the blessing of being a mom, a wife, a sister and a daughter.

Have a great weekend.

When I know more, I will post again.

Thanks.

Kris

PS - Phillipians 4:13 is now hanging on a chain around my neck. It's a great reminder as I start each day.

I can do all things through Christ who strengthens me.

Not as easy as a phone call

I knew when I left for work this morning that I would be coming home to rest before the day was done. By noon I was headed home. This morning I left a message for Dr. Cohen letting her know that the low dose of prednisone did nothing to help my aches and fatigue. She called back this afternoon and instead of lining up the Rituxan, she told me we need to do some more tests to rule out it being anything else.
First, a test of my adrenal glands. It could be that they aren't working like they should be and that is causing the fatigue and aches.
If it's not that, then we will do a full chemistry panel and the doctors will make sure it's nothing else.
An EMG and EKG might also be ordered and maybe a muscle MRI which is a new technology that wasn't available three years ago. Not everything at once, the easy things first.
It is much like putting together a puzzle. Look at this piece, does it fit? Look at another piece....does it fit?
In the end the puzzle is completed but it takes patience and the right set of eyes.

I don't remember....

I think of it often but don't take the time to get back to my blog and write what's going on with me.
The thing is, I don't remember what it feels like to feel great. June marks the 5 year anniversary of the results of the muscle biopsy. The scar in my thigh has faded, the disease has not. There are many days that I am sick and tired of being sick and tired. What would it be like to not have to push through a day? I go to the gym because I can. I go to work because I can. School functions and church functions because I can. Actually, there isn't much I can't do, but the price is fatigue. This has not gotten the best of me, but it has gotten me back to the doctor. Last week I decided I had had enough and there has to be something else we can try. I had a cold so the increased fatigue may be from that. My red blood cell count is low. Not low enough that it caused any alarms for my doctor accept now that the aches and fatigue have come on stronger I am being monitored more closely. The aching in my arms and hands is a daily thing now. The fatigue is....well, exhausting. I am back on a low dose of prednisone and she has prepared me for the fact that I might have to take it forever. She is hoping that will help me kick this thing but if it doesn't, she would like me to start a new medication called Rituxan. This is two infusions (they can take 2-5 hours), 15 days apart that could make me feel good for up to six months. When the Rituxan wears out, I can get another infusion. They use the drug primarily to treat people with Rheumatoid Arthritis but it has been effective in people with dermatomyosits as well. Last week I wasn't so sure I wanted to go this route, today it seems like it might be the right choice. Everything has side effects, all medications carry with them risks. My doctor has to disclose the risk but also feels that the positives would outweigh the negatives. I'll keep you posted on what I decide.
A few of you have asked if there will be a second annual Myositis walk and I know there will be. I just don't know if it will be the first or second Saturday of September. I do know it will be at Nicolet High School again and I am thinking of how to incorporate a running aspect into the event as well. The raffle was a last minute thing but it was raised a lot of money so if you know of any business owners or people who would want to donate gift cards or other items to that part of the event I would really appreciate it.
Take care my friends.
I don't take for granted each day I am given. I count my blessings instead of sheep. good night.