Win some, lose some


As I woke up this morning, I was wondering what the day would bring. I felt good and went about getting some laundry done and dishes done and other mundane household chores. I was feeling great so I enjoy doing these things when I feel great.

As the day has gone on, I have found my strength waning, and my energy almost all gone. It is like someone has a lightswitch and when it is “on” I am fine (at least for me, lol). The change of energy can occur much like that light switch, and as quickly. I was humming around the house one minute and then in a few more minutes, I was in bed. Yes, in bed. Arms and legs feel like spaghetti noodles, and pain has increased as day has gone on. I took my meds and yet it still hurts.

As I am laying here I noticed that my kitty cat, Shelby, has joined me and is sleeping next to me. If you have read any of my previous posts, you will know how she seems to sense that I need comfort and she stays next to me when I am not feeling good. When I got up and went into the kitchen, she followed. When I came back to bed, she followed. She seems to feel it is her duty to make sure I am ok and if she has to stay by my side, that is what she does. It is amazing to see how intuitive animals can be.

Our dog is even in here with me. I am not sure if she is intuitive, but she wants company so here she is too.

So, in a nutshell, I got the day started off well, then it deteriorated later in the day to where I am now in bed, resting. Have I mentioned how much I hate lupus? It can take a great day and turn it upside down in a matter of minutes, it seems, and make me a slave to the bed. So, I am resting here in bed, playing computer games, and napping off and on. That is how you attempt to tame the beast. If you do not listen to your body, you will get worse, not better.

My Walk for Lupus Now event is Saturday at 9 am. I am hoping to get to walk, but we will see how I feel. I can attend and not walk being as I am a lupus patient, and it doesn’t matter one way or the other. I liked walking last year and walked a mile! woot woot!  Last year our team raised $125 and I set our goal this year at $250. Sadly, we will not make it, it looks like, but we have beaten last years total so that is a good thing. It counts!

Several of my walkers have been hit hard with difficulties. One has broken her foot, another tore a tendon and found out her husband has prostate cancer, another one’s husband passed away a few days ago, another one got a new job and has to work, and so it leaves just me, my 5 year old granddaughter, and my daughter in law and other granddaughter to walk and represent our team. Our team name is Beautiful Butterflies. I am the captain. This is only our second year having this walk so I am pleased that it is getting the attention it deserves.

Next  year, I will work harder to get some corporate sponsorship and giveaways and raffles and such to earn more money to fund the research we so desperately need for this disease. I, personally, am sick and tired of being sick and tired and I worry about my grandchildren and children developing this disease as a result of genetics and me passing it on to them. I pray that doesn’t happen but you never know. That is my reason for walking, to find a cure. A cure will keep them all safe from the threat of a life in pan and uncertainty. It gives me hope to think it may happen.

Well, I feel a little nappie coming on so that is it for now. I am hoping I can research some of those other autoimmune diseases for a future blog post. I found it interesting to see the list and read a bit about each one. I think others may like that as well. Thanks to you all for reading this blog. I truly appreciate each and every one of you!