Out of Touch

           I feel like I'm so out of touch with my lupus. I've been living my life as much as possible as if it doesn't exist. I still facilitate the meetings. I still tell people I have it. But I haven't a clue what's going on in the Lupus world. I feel ashamed. I have an issue and I feel lost. I feel like I only care about what's going on when I'm affected and I'm letting down or jipping the people who attend the meetings ( I started to write my meetings, but they belong to everyone, not me). I know I need to move forward with my life, but does that mean I have to stop being an advocate for lupus and cut all ties? At one time the whole lupus world felt toxic to me and I was having a hard time with organizational lupus if that makes any sense. I felt battered and bruised and disillusioned. I'm stronger now. Do I want to do it again? Do I want to get deeper involved? I know knowledge is power. I know the more informed I am the better I can handle my issues with my disease. I know if I don't take an interest my disease will be ignored by healthcare, the government, and society as a whole. I know, I know, I know. So what exactly is the question or my problem? I think it's because again I don't have a choice. Doing nothing is never an option. So I have no choice. What am I afraid of knowing?
           I can no longer take plaquenil. When I put it in my mouth it has this strong, acrid taste. 20x worse than the taste of prednisone. So bad I refuse to swallow it because I'm scared something's wrong with it. Called one of my docs. Was told to call pharmacy. Called them, was told to take with applesauce. Not doing it. Took it to the pharmacy,they gave me a new script from a brand new bottle. I tried to take it in front of them and they could see the reaction on my face to the taste. They're returning it to the manufacturer. Meanwhile I don't have any medicine to take- sigh. I have a doc appt next week and the week after. Oh and if anyone knows of a support group near Columbia, SC let me know. Will be in the area in the summer and so far not havining any luck locating one. Thanks for listening. I know what I have to do!
Live.Love.Laugh.Enjoy life to the fullest!

Looong time!

Just when I think I have it under control, bam! I think I started a blog out like this before. Messed up on my meds and ended up in bed for a few days. I like to forget I have lupus. No one treats me like I have it. I don't look like I have it. My doctors  - well, we all know how that goes. I've been feeling bad for everyone these last few months. I should be doing more to help my family. My husband works to hard. I should be doing more for my kids. The list went on and on and on! I'm feeling better. I feel so good sometimes I forget it's because I've found a balance. I was getting ready to embark on a huge mistake that would have set me back to where I was 3 years ago. That's when I messed up my medicine ( hanging out with the girls I worked with and forgot to take my meds). My stress level started to escalate. It just didn't feel good. I have stress in my life. I manage to keep it to a tolerable level. My life is working for me now. I actually lost my long-term disablility because I'm managing so well. Can you believe it! Because I don't call my doctors twice a day to tell them of the pain I'm in (they don't do much if anything about the pain other than what I'm already on), I wear makeup and take care of my skin so I don't look like the living dead, I stopped seeing my therapist because I wouldn't afford her, and I try to alway have a sunny disposition- I'm fine! I'm no longer sick according to them. They haven't fixed a thing! Just had to take a deep breath. I have to keep moving forward. Thanks for listening.
Live.Love.Laugh.Enjoy!

Second Home

Back in the Berkshires. This time we took the youngest two kids. They didn't want to come. Most teens hate traveling with their parents, so I wasn't offended. Once they got here they were ok. At some points I think they were actually enjoying themselves. We went to the summit of Mt Greylock, the highest peak in MA. We loved it. We literally drove through clouds! I'll post pics when I get home.
Coming up here was good. I've been feeling like my life is at a standstill. I have no goals. No new challenges. I feel empty or incomplete. Coming here made me forget until I started writing! :)
I had minor surgery, so I was confined to the house for a bit. That always drives me crazy. Maybe that was it.
Oh well. Time to perk up and enjoy the rest of my weekend.
Live.Love.Laugh.Enjoy!

Anime Boston!

Sitting in the food court with Devin. It's only 11:22am and I'm exhausted. Walked around the mall for about an hour now and ready to flop.

Post #100!!!

I am so tired and I hurt. Took a vinyasa yoga class this morning. I was so proud of myself because I completed the class. I had to sit on the floor for about 10 minutes before I could roll up my mat. Sit another 5 in the lobby to put my shoes on and gear up to go to the car. I had an appointment after that and crashed as soon as I got home. Right now I'm so tired I can't think straight. This is all good right? Lol let's see how long it takes to bounce back. I'm in bed trying to get the strength to take my clothes off. I ordered out (delivery) and ate in bed. Not good, but beats starving. I'm a work in progress!:) time to drag myself out of bed and at the very least get out of these clothes and go back to bed. Goodnight.
Live.Love.Laugh.Enjoy!

Better than I rembered!

Yesterday at Lena's was divine! The butter croissant, the fluffy eggs and the salty tartness of the cheddar cheese.hmmmm I'm in love! As you see the hubby was being good with the fruit salad. That was also delicious. Fresh and sweet - I ate some of his food too! I'm no worse than I was. Still felt crappy last night. Relaxed at home the rest of the day. Today feel somewhat better. I won't do much though.
Enjoy the day!

Lena's Cafe & Confections
873 Whalley Ave
new haven