Thursday, July 29, 2010

In the Berkshires!

On my little getaway with the hubby! At first glance I looked at the little town and said there is nothing here. (Pittsfield, MA). Once we got settled in, it's rather nice. We found this cute little pub, called the Lantern. They had the most delicious bacon cheeseburger I've had in a long time. I haven't eaten one in a while, but you know what I mean. Of course I devoured it! Then we went across the street to the coffee shop (I don't remember the name), and sat outside while Darrell had desert and I had a coffee. It was so nice. I would love to live in a small town like this with the perfect weather (for Me) year around. Alas, this is not the place. Too cold in the winter.
We're off to a resort today to explore. I'll post pics when I get home!

Tuesday, July 27, 2010

Getting there

I'm feeling more like myself today. I'd be lying if I said there were no tears, but it's getting better. I burned a pot in the kitchen. Now that's more like it! It's amazing when you forget that you're cooking something and you're outside and think your neighbor is burning something but it's really you and that's the norm! lol Gotta love it!
Believe it or not I do love it. I'm alive.
Went for a walk with a buddy today and it felt so good. I haven't been for a walk in few weeks. Why do we stop doing things that are so good for us?
Slowly but surely I'm coming back and changing in the process. But aren't we always changing. Change is good.

Monday, July 26, 2010

Better day

Today was good. Didn't focus on myself so much today. Went to md appt with hubby. Had a nice lunch at Panera - salad, no bread. I have been itching like crazy because of wheat. Had a friend come over to just hang out and sent her home with goodies from the garden. I had to say no a couple of times today to the kids. All in all, a pretty decent day.
I heard some disturbing news about a friend. Until this moment I had put it on the back burner. I know that sounds harsh, but right now I can't even  deal with anything else. I can only listen. No advice. Just listen. I have no advise to give in this case. But for now, tonight, on the back burner it goes.
Sleep well.

Still here

That's how I've been feeling lately. I can't seem to shake this. I'm still crying. For her and for me. She was the one person I could talk to. We both knew that our head problem was going to kill us, it was just a matter of when. We wouldn't put into words, but we knew. I think we did once. We would spend our time talking about what we were going to do with the time we had. Tips on how to keep our body healthy. Our feelings about our kids. Me wanting them to go off to college and leave the nest and her wanting to move to whatever town her son was going to college in so she would always be close to him. And then we would laugh because we were such opposites. She's gone. Well not her energy. Sometimes I still feel it. I just can't seem to get motivated. I tried looking for motivation in my children and that was a disaster. That left me more depressed than ever. As I lay in bed crying yesterday my husband asked why was I crying ( I know he wanted to add, now). I told him my life consisted of making him breakfast and getting frustrated with the kids. He told me, with a smile, to forget about the kids and wasn't making him breakfast every morning enough? My comment was absolutely not, there has to be more and if he kept it up he would be out with the kids. lol  I'm making the accessories, I just started a new scarf, maybe the Butterfly Affect ( I know the term is effect- wasn't sure if I could use it) is what I need. That's the name of the business ,by the way.
The Hubby and I are getting away for a couple of days. I hope this will help. I plan to bring my camera and view the world through my lens.
Maybe a new hair color is in order. I've lost another few pounds. Yay! Still too hot to eat a lot of food.
I guess I need to take my own advice.

Wednesday, July 21, 2010


Still a little melancholy. I didn't cry when I woke up this morning.
Have this weird pain in my ear and along left side of my jaw. I'll take something for inflammation if it doesn't go away by tonight. Could be TMJ syndrome caused by inflammation. Probably due to my decrease in prednisone. Just my diagnosis - with the help of the internet. If the anti-inflammatory doesn't work I'll call a doc.
I'm shedding pounds! Yay!!!! It's too hot to eat! I never thought I would say that. And I'm not starving. I ate mac and cheese out of a box last night. Yuck. I use to love that stuff. Rather disappointing. I've been eating mostly things from my garden. It's nice to be able to walk out into your yard and get your meals. Very convenient. My squash went to down so we planted celery, collards, cabbage, and broccoli in it's place. I was amazed at all the room squash takes up.
I'm setting up my lupus awareness table today at an outdoor concert in Hamden. You can contact me for more info. I'll post pics tomorrow (  or next week lol).
I'm running out of things to say.

Tuesday, July 20, 2010

Here's a picture of Madison! Isn't she beautiful!

Me in Lake George getting suncreen sprayed on for the hundredth time.
the kids! They strongly dislike getting their picture taken.

Monday, July 19, 2010

More Tears

Not the bawling my eyes out of Saturday. Not the steady stream of Sunday. Today is a trickle here and there. I've even been able to smile when I think back to some of the conversations we've had. One in particular - she'd given me her recipe for sauce. She was appalled that I fed my babies jar sauce ( as every Italian family I know had been lol). I told her I had finally gotten a recipe from FN Everyday Italian. Her response was her's was better and never trust a skinny woman with a recipe. I had to remind her she was 120lbs soak and wet- which she than got offended and laughed and said don't ever say she was that heavy she was only 110. We had such a good time. Her recipe is excellent by the way. It was so good I gave away jars of sauce to some other friends. I still use it to this day. Thank you Roseann. Your secret ingredient is safe with me! Believe it or not about a year later she even started to like Giada! I guess skinny women can cook too!
My son's party yesterday went pretty well. I'm in a fog so they got away with more than I would usually tolerate. The pool didn't become off limit until 9pm and the last of his friends went home at 1am. They cleaned up their mess, so when I got up this morning my backyard was in good shape. I was pleasantly surprised.
 My head still hurts, I'm still achy, but it all is to be expected. I'm grateful for every breath and I'm going to enjoy my day.

Sunday, July 18, 2010

Having a tough time

I didn't sleep well last night. As a result, everything hurts. My head, cramps, and my heart is still aching for the loss of a friend. I've never had one of my friends die. There were those that I was friends with when I was younger and hadn't spoken to in years. But no one that I was still visiting with and talked too. It's hard. The tears are still coming. I don't know if I'm shocked by her death or not. I know deep down I shouldn't be. She was diagnosed with GBM a few years ago. To say her death came on suddenly is not true. I just never prepared for it. I would never let myself because I never wanted it to happen. I'm trying to mourn for her without drawing any parallels to my life. I want it to be separate for many reasons - she deserves to be mourned, she has a beautiful spirit, it's not always about me ( I can't say that enough!). and three, I'm scared. If I had to face the fact that she could die from a brain tumor, I could die from whatever it is that's causing my headaches. ( Drs still don't know why I'm having them). As I've learned from my past (my mom dying when I was 17) not preparing for it won't keep it from happening. I guess that's why I'm trying to live my life now with no regrets. Have fun, be responsible, try not to do harm to others and apologize when I do.
I hurt someone that I consider a friend. Not intentionally, but I hurt her. Sometimes saying your sorry just isn't good enough. There's nothing I can do to change it. She sent me a letter saying she can't forgive me. I understand. It's time for us to move on. I wish her well, I wish her happiness, and love.  It's like saying good bye to two friends. In very different ways. One is forever and the other is until we meet again. The forever one I haven't cried for because I know she'll be alright. It's time for each of us to start a new life.
My tears have dried up for now and I have to continue with my day. A day filled with teenagers! I am grateful. To be able to yell at my kids to do their chores, laugh with them over their silly antics, and get an occasional hug and if I'm really lucky a kiss.
Live.Love.Laugh.And Enjoy every day.

Saturday, July 17, 2010

In Memory of ...

This evening I lost a friend. She was such a beautiful person. Kind, loving, very straight forward and no nonsense. lol We would spend hours talking. ( literally) I'm going to miss our talks at the kitchen counter over a cup of tea. She was way too young to die. Too much to live for. Too many people to love and still needed her. I am grateful for our friendship. She pulled me through one of my dark moments. Reminded me of who I am. Thank you. In our friendship there were were no regrets and never anything left unsaid. I wish I could have seen her one last time, but we always said goodbye and hugged. We knew how much the other valued our special friendship. We weren't best friends - we both had our own. We had a special friendship. A mutual respect and admiration for each others strengths. A friendship I am glad I had the opportunity to experience.

Good Morning!

I always look forward to the time I can decrease my prednisone. I only decrease by 1mg every other day at a time. Even though it's such a small dose I really feel the difference. Everything feels so tight. There's very little swelling. Not even enough to
I forgot to pick up my DHEA. DHEA is what gives me my energy. I forget that after a while. I ran out last friday I think and by yesterday I could barely get out of the recliner. I realized how fake my energy is. I don't think that's the right word. I guess I should say how chemically induced my energy is. I haven't been eating all that healthy lately so I don't have all those glorious vegetables helping out with my energy level. It takes effort just to lift my arms. But I am grateful that I know what to do to fix the problem. I picked up my DHEA yesterday and I hope it will only take a couple of days to kick in. Normally I feel the difference after a day. I think it's going to take longer this time.
It's hard to be upbeat when you have no energy. Today I just want to be left alone. I don't feel like that too often anymore. I think I'm entitled though. I'm beginning to PMS also, so that doesn't help. Today is definitely a day to stay out of my way. I think I'll screen calls to just the kids and hubby. Nothing personal everyone, just need a break. I have to rejuvenate.
I can remember trying to do a day a silence to get centered. I think I'll try it again. Not today. That's something you have to plan or at least notify the household of ahead of time.

Thursday, July 8, 2010

Feeling Good!

Feeling good s such a wonderful thing. Trying not to do too much. I did all the running around I can do for today. Now it's time to relax. Head starting to hurt a little more, but not unbearable. I feel good.
I'm starting a new adventure to help those with lupus. I had (and still do sometimes) such a hard time with my lupus. You know the days where you just can't get out of bed to fix something to eat, the times you have to decide between paying a bill or your mortgage and buying meds. You don't have enough for gas or a way to get to a doc appointment. There's no agencies out there to help people with Lupus. Especially if you fall in an income bracket that is above the poverty level. What do we do? I'm working on it. With the help of family and friends we're creating accessories made of natural fibers to help raise money to help those in need. My husband is working on starting a legitimate business, so we don't run into complications. I'll keep you posted.

Saturday, July 3, 2010

Don't over do it!

I kept trying to tell myself that yesterday. Whenever I'm down for a day or two I always want to make up for those days. It doesn't work that way. I know it doesn't work that way. I did a lot yesterday now that I look back on it. I'm sitting here and I couldn't understand why I'm so tired. That's why. No excruciating pain, just tired. There's still much I want to do today ( what else is new). I know I can't. Everything that will get accomplished is going to get accomplished pool side. In the shade of course! I may take a ride to comcast to change a cable box, but that's it. And it starts!  I'm going to relax. I have a book. I have sunscreen. Plenty of water. Now I just have to sit still. Meditation is what's missing. I haven't done it in a while. Must give it a go. Oh well, I'm starting to ramble.

Thursday, July 1, 2010


Feeling  a lot better. I'm very grateful. I did increase my afternoon dosage of neurotin. I should sleep better tonight. I read an article of gratitude this afternoon and I realized that I forgot to be grateful these past couple of days. Or did I. I can't remember. Any way I am grateful. I had a fabulous time with the family. My boys were excellent. No fighting, no nagging. They had a good time at the wedding ( their first as young men). My husband was very sweet and attentive. I couldn't ask for a better time. The days that I was down, my house got cleaned without me having to be the one to tell them. They even did laundry. I am grateful. To be alive and feeling pain. To know that I haven't given up and I still look forward to another day. I am grateful. To be able to touch another human life in some small way, to make a difference to someone I don't know. And do it, not to get a thank you, but for inner joy. I am grateful for relief from the pain.
Live. Love. Laugh. Enjoy!!!

Still in pain

I did it to myself. I know better. I ate foods I knew were bad for me. I sat in a car for over 10 hrs in the sun - what did I think was going to happen. I doesn't make feeling like crap any better. I did apologize to myself. Sounds weird but I felt a little better afterward. The shot yesterday did provide some relief. Pain came back full force in the middle of the night. I'm going up on my neurotin today. The doctors wanted me to ride it out. That's not going to happen if  I have something here that I'm already on and it will make me feel better. I can always decrease later. I'm not the sit and don't move type. I hate this. I cried yesterday. I hate that even more. The feeling of helplessness. I have new lupus friends to talk to about how I feel, but I'm in too much pain to even listen to voices. I've dimmed the the computer screen so it's tolerable for short time. This too shall pass. I do know I'll never do a trip like that again. I'll break it up and travel long hours at night. I told my husband I felt like a vampire. I can only come out at night. The sun is killing me. I want to laugh but I don't think it's a joke. I really believe that the sun could kill me. I think that's all for now. Just had a long pause. Enjoy your day for me!
Live.Love.Laugh. Enjoy!