Wed, Feb 11, 2009

Well, today was a strange day. I was awake at 6 am with a terrible nightmare, it was difficult to fall asleep after that. I awoke again at 9 am. I was exhausted and did not think I would make it until bedtime.

I came downstairs and watched the last part of Seventh Heaven on TV. Got the girls breakfast and cleaned up the spilled oatmeal on the floor/table.

Noah (our dog) has been driving us crazy lately. I know he needs walked more. I've just been so tired and James just doesn't like him and won't walk him....sigh....

If I need to go do laundry I either have to tie him up or ask James to watch him. He constantly gets things he knows he isn't supposed to have and chews them. Like today, our brand new rug pad that we haven't even used yet. I was in with Madison (she was on the naughty chair for stratching her brother), and I went out to check on Noah who was in the hallway. I opened the door and he jumped up and ran to the other side of the hallway with tape in his mouth (from the rug pad).

I felt pretty good anxiety wise today which was a blessing. Just felt tired and a little depressed, two Chronic Lymies committed suicide this past week I just found out. I feel awful for them and pray that I don't get to that state of mind again, it is worse than any imaginable amount of pain.

I wonder if I will truly be well again. James and the kids will not even know me. It's exciting to ponder the possibilities, but sobering to realize it may never happen. I can still remember (somewhat) how I felt before my senior year in high school when I got so sick. This disease makes me so angry to have taken so much of my life. So many good years. Sometimes I wish it could have happened to me later in life, my 40's or 50's so I could have enjoyed my youth.

Last week I had a good day. I still had a little anxiety, but I felt pretty darn good. It felt like such a gift. And I realized that to the rest of the world, this is every single day. I remember in CA when my symptoms were for the most part non-existant in 2005-2006 and on those days when I just didn't want to go to work, I smiled knowing that a year before I would have taken that anyday.

I functioned working as a Neonatal Intensive Care nurse in a level 3 NICU with critical neonates, and I loved it. Now? Now I would not be able to stand and do assessments or remember how to calculate meds correctly.

That makes me sad. Right now were are remodeling our basement after it flooded in January, and it's all I can do to try and keep the house clean and try to do a little to help with the basement. It needs to be done before I start treatment as I may get very ill and will not be able to function at all.

How do you feel when you start taking medication to kill the bacteria that's been allowed to party in your body for 12.5 years? How bad can the herxheimer reaction get?

THAT is what frightens me. I know the local hospital has no experience with Lyme Disease. I went there in Oct with a panic attack (it had been lasting for 4 hours and even after being in the ER, didn't let up for several more hours). I told the Triage Nurse that I had been diagnosed with Lyme 2 weeks before. She looked at me wide-eyed and asked, "Where did you get THAT?"

Doesn't matter that PA has the highest number of new cases of Lyme and it is right next to OH! Doctors here don't know the s/s of Lyme, so everyone is diagnosed with MS, Lupus, FibroM, Chronic Fatigue Syndrome, ect. How many of these people are suffering with Lyme and hiding behind a misdiagnosis?? I was one of them for years.

Well, I should start watching Noah better, he's tried to eat a picture frame he saw on the table and went upstairs to eat the rugpad, chewed a sock, ect. Just in the last 5 minutes.

Good Night.