Well it has been a very adventuresome week. I was on vacation this week. For the most part I had a good week, but the last two days of taking care of my sick Grandson Aiden (6 months old with bilateral ear infections) has taken its toll on me. I started feeling bad last night about 3 AM and now this evening I am hurting really bad. I started riding my bike every evening about a week ago and felt great afterward but I did not get a chance to last night and tonight I hurt to bad. Maybe if my pain medicine kicks in I will go for a ride later. I actually enjoy going by myself because I can just be alone and daydream as I ride.  Doing this in the evenings is great since I really can not get out in the sun without causing a Lupus flare. Well that is it for today. I pray Aiden feels better soon. Babies do not understand why they feel bad and it tears you up to not be able to make them better quickly. For what it is worth it was a good vacation.

Living with Lupus

I was diagnosed with Lupus on Dec. 14, 2006, just 9 months after my Dad died. At the time I had no clue what my life would be like in the future. I did not know that I would have to live on a daily diet of medicines and that the side effects from them would some times be worse then the disease.  I had no clue that my life would change so greatly and that my first thought before doing anything would be "do you think I can do it? And how will I feel after I do it if I decide to do it?" I go to a Rhumatologist that I absolutely love the staff there. If I ever have a question I just call and ask and they go get the Dr and put him on the phone right then. That is very uncommon. I have a wonderful family that helps me whenever I need it, but sometimes I feel guilty for even relying on others. I have always been a very competitive person and  not one to let someone else do anything for me. I have always been the type of person that if it needed done I did it. I did not want to wait for help, I just did it. Even if that meant moving heavy furniture. Removing carpet, painting, climbing ladders, whatever I just did it. Now I feel cheated because I have to rely on others. I still try to act like I am "Normal" so I can feel normal. I feel like I HAVE to get up early just so people (my family) included will not think I am lazy. I know they do not feel that way but you can not help what you feel when you wake up and feel horrible but get that panicky feeling to get up and act like you are ok.

Truth be known I do not want to know how I will be tomorrow or the next day. I do not want to think about  living forever with this disease that they have not found a cure for yet. So I guess I will continue to live day to day since that is how I have managed to survive the last almost six years.

I started the new drug Benlysta (first FDA approved drug for Lupus in over 50 years) a little over a year ago and I am proud to say that I have seen some improvement in my daily life. So there is always something to find positive about your life!

Thanksiving

I am Thankful to still have a job, my home and my wonderful family. I am grateful to be going to school to learn Medical Coding. I am thankful that I still am healthy enough to work. I am hopeful that next year will be a better year then this one has been. God does not give us more then we can handle. My new saying everyday is "It's a Great Day to be Alive" God Bless everyone and hope everyone has a Wonderful Thanksgiving!!

Well I went to the Dermatologist this past Tuesday. She has no idea what to do for me. Nothing she has given me is working with the Discoid Lupus. She is trying me on Elidel cream. I went to my Rhuematologist yesterday. He completed the Insurance forms for me so I can protect myself at work. I filed an intermittent disability claim so if I call out sick I am legally covered. Dr Buchoff says that I also have Fibromalgia and he prescribed Lyrica.

Dr visit

I went back to Dr Schefsky today for a recheck on the shingles I have. He said I was doing really well. He thinks I should have the Shingles vaccine that has recently come out. But I have to ask Dr Buchoff in 2 week if I can take it. With my immune system whacked out because of the Lupus. We shall see. Susan came by the office today. She still has not found a job yet. I miss working with her. Sabrina called me today and asked for a cheap laptop that they have at BJ's for Christmas. We will look at it and see.

Good Luck Ben & Jen & Family!!

It has been great having you guys as neighbors. Hope your trip goes well as you drive home. Tell Dax we will miss him. If you are ever in the area again please drop by and see us. Thanks for inviting me to your blog. I will keep in touch and let you know how we are.

God Bless,
Elsie