a quiet week

It has been a quiet week for me especially on the disease front. My pain has been minimal and the headaches have been few and far between. I am hoping this can be chalked up to the infusion treatments that I took in November. Isn't it amazing that you take a drug in November and it does not start working until 2 months later? Ah, the mysteries of modern medicine.
I am starting to go down another level of prednizone. I just pray that the effects of the prednizone go away soon. Every time I look in a mirror, I want to cry. I even had complete strangers come up to me and ask what is wrong with my face. I just smile and say nothing. Anyway, I am so glad this past week has been good. Hope this is the beginning of a new trend.

Me Brave....I Think Not!

Yesterday someone sent me a note telling me how brave I was to be dealing with all my health issues. Being told that I was brave struck an odd note with me. I hardly think I am brave as I was not given any choice in the matter in regards to getting sick. It simply happened and I am being forced to deal with it. Bravery to me is something of a choice. A fireman or policeman has the choice to pursue that career and knows the risks and dangers. They are brave. People joining the military make a choice to defend our country at any cost. They are brave.

I hardly think I am in the same category. I am just a woman who came down with a rare disease (that has totally taken over my life) and I have no choice but to deal with it. Some might just call me lucky?!?!?!?

haunting dreams

It's Monday morning and I am enjoying the peace and quiet of the house. I am still somewhat shaken from the dream that I had last night. It was of me dying. The dream seemed so real that I woke up shaking. This morning I have been thinking about the dream and trying to wrap my head around the thoughts of death. I know from my prognosis, that death is a reality that I could be facing withing the next three to five years. The one question that keeps going through my mind is "how do you ever really say good-bye"? I think about my husband and my children knowing in my heart that leaving them would be the hardest thing. But then who knows when it is our time to go? I keep going back to my original thought. Every day is a gift from God and you should live each day like its your last. And when the time comes for me to go, I pray that my family and friends will know how much I love them and that all of their beautiful faces will be within my spirit and heart forever.

Holiday Survival

OK...so I am not the most faithful blogger. I can come up with all kinds of creative excuses why I have not blogged in the last month. We can chalk it up to being busy with the holidays or that I simply did not have time. The truth is I just have not felt like it. Not very exciting but that is the truth for you!

I did manage to survive the holidays. I am so thankful for the ability to shop on-line. Cabellas and Wal-Mart became my life saver. The kids had a wonderful holiday and we were very blessed with so many people bringing us food and gifts to make sure our Christmas was special. Doug and I were so amazed by the generosity of others to the point of being overwhelmed. I kept asking Doug "why us"? I still would have traded it all to have my old life back. That may not seem very grateful but that feeling was with me the whole month of December.

We did have a scare the week of Christmas when the local hospital thought I was having congestive heart failure and called us on Christmas Eve to share that bit of news with us. For five days, Doug and I were scared out of our mind. All we could do is pray. We ended up at Mayo for heart tests and my heart checked out fine. Praise God! Now looking back, it sure puts things in perspective. One phone call can change your life.

I just spent this past week at Mayo for more tests and appointments. We found out that my lung functioning has improved 6% which is not much but it is something. They feel I only need oxygen at night which is good. The specialists keep telling me that I am a long way from recovering and that it could take several months before I feel better. All I can do is hope and pray and lean on family and friends. This is something I am learning how to do slowly.

It has been an interesting month...

I have not blogged in awhile due to my health. To make a long story short, my lungs have gotten worse so I have been running to the Mayo Clinic for multiple appointments, tests and infusion treatments. Whatever energy I had has been totally zapped. With three kids, I try to give them what's left of me. Hopefully in December I will have more energy now that the treatments are over. I hope everyone had a good Thanksgiving!

Finding Faith.....

I am trying to find my faith. I have always felt that I had a strong faith in God but lately it has been shaken to my core. It is only natural when you are facing something monumental that you ask "why me God". I feel ashamed every time that thought comes to mind. I know God did not promise us a life of rainbows and sunshine. I know that he did promise that he would be there for us and that he is only a prayer away. I know this with all my heart but yet I feel my faith wavering just a bit. All I can do is pray and have faith that people are praying for me.

In The Quiet Moments

Lately my world is full of quiet moments. Being home bound will have that affect on you. Most of the time I cherish the quiet but sometimes it is a vicious reminder of what this disease has done to my life. Will I ever get used to the fact that until 3 months ago, I was working, running around with friends and family and living life without any restrictions and now I am forced to be at home? Will I ever get used to the fact that just doing simple tasks like unloading the dishwasher can make me so tired that I need to lay down for an hour? I know that I have so much to be grateful for. I have the most incredible, devoted husband and 3 healthy, happy kids. I have to love and support of my extended family and friends. But in the quiet moments, I shed tears over what has been lost and the unknown road that lies a head. Lord, please give me strength and comfort during the quiet moments.