Living with Lupus

Out of Touch

2012-02-01T20:41:00.000-05:00

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!

2011-12-17T11:04:00.000-05:00

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

2011-05-22T10:23:00.000-04:00

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!

2011-04-23T11:24:00.001-04:00

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!!!

2011-04-20T20:39:00.001-04:00

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!

2011-04-17T10:13:00.000-04:00

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!

2011-04-17T10:06:00.000-04:00

Lena's Cafe & Confections
873 Whalley Ave
new haven

Yumm!

2011-04-16T12:22:00.001-04:00

Feel like crap. It's okay. Had a great couple of days. Had a nice night out. Dinner at Wendy's. Pain started towards the end of the night.
This was supposed to be about where I am now! Sitting at Lena's in New Haven waiting for a table. I think I'm going to have a spinach omelet. Yes cheese and eggs! I'm so excited.
What happened. I loaned out my book. Eggs aren't hurting the animals. I can make the argument against that statement. I choose not to. Too hard being a vegan. I will cut down my consumption and be more mindful of where it comes from. For now I will enjoy my meal.
Keep you posted.
Live.Love.Laugh.Enjoy!

Beautiful Day

2011-04-15T08:38:00.000-04:00

I'm in the Berkshires! The air is so crisp and clean. So refreshing! Dined at a fabulous restauraunt last night, Brûlées. Delicious food, great atmosphere, and they were open past 10pm- huge for this area! Good job Ken!!!
Feeling great this morning. I always appreciate feeling good after a few days of feeling bad. Indulged in too many fatty foods lately. I have to get back in track. I want to start going to yoga classes again. I get more out classes vs dvd's. Don't get me wrong, DVD's are great if you can't get to a class, but it's not the same.
While talking to a new friend yesterday I was encouraged to write more. Expand beyond the blog. Something to think about.
I'm sitting on the patio, listening to the rushing water, looking at all the evergreen. It's beautiful, but cold! Going back inside! lol One more look. One more inhale. Now I need a cup of tea! And my meds! Have an awesome day!
Live.Love.Laugh.Enjoy!

Almost ready for spring!

2011-03-08T17:03:00.001-05:00

Veganism is agreeing with me! My joint pain this winter has almost been nonexistent. I'm down to 184lbs (I'll tell now that I'm under 200lbs!). The headaches are still there daily, but less episodes of excruciating days in bed. And I'm down to 5mg of prednisone, yeah baby!
Even though I still have issues with Raynaud's I'm not ready to give up winter. There's something about winter and food. Roasted root vegetables are my love right now. It wouldn't feel the same in warmer weather. I've been making a vegetable medley at least once a week. Here's the recipe:
1 yam or sweet potato ( scrubbed with skin on) large dice
1/2 butternut squash ( peeled with large dice)
1 container of brussel sprouts ( washed, cut in half)
1 onion ( diced)
1 potato ( peeled and diced)
1 parsnip (peeled and cut in chunks)
1 carrot ( peeled and cut in chunks)
1 green pepper ( diced)
1/4 tsp dried rosemary
1/4 tsp dried thyme
1/8 tsp dried sage
2 tbs olive oil
I hope that's everything, you know I always forget something! You can really put what ever you want.
Cut vegetables all about the same size so that they cook evenly and place in large baking dish. Sprinkle herbs and toss with olive oil. Bake at 400 for about 45 min. Tossing every 15 min so that it doesn't burn. Done when all vegetables are fork tender.
I hope you enjoy!
I've also been drinking more water. I found this really cool water bottle by Rubbermaid. I love the spout. Has a large opening and a leak proof cap. Love it!!! I'm so bad a drinking water. I find this bottle very convenient.

Reading this great book on buddhism. Very insiteful. Talks about looking to yourself for the reasons why your life is the way it is and how to have lasting happiness. Lasting being the key word.

That's it for now.
Live.Love.Laugh.Enjoy!

Hello!

2011-02-05T12:24:00.000-05:00

I'm still a vegan! I'm shocked. I'm doing so well with it, why wouldn't I want to continue. My prednisone is down. I'm still losing weight. I feel awesome - when I don't overdo it. Life is good! I've rekindled my Mary Kay business. It's going slow, but it's at a pace I can handle.
I'm more social since I last wrote. Gone to dinner parties. Hosted a small get together at my house for an old friends birthday. Going out more.
Managing my meds okay. I still forget from time to time. I still pay for forgetting from time to time!
Overall I'm doing good!
Live.Love.Laugh.Enjoy!

Feeling Good!

2010-11-08T08:38:00.000-05:00

I hate to say it, because I go through so many extremes. I'm vegan! It hasn't been hard. No harder than being a vegetarian. I feel good. The headaches are still there. No help for that. I'm still taking the Neurotin and it's keeping them bearable, so I'm grateful. I'm doing my yoga and meditating. It's been three weeks. I'm losing weight ( sooo happy about that).
Still looking for answers about the headaches. Looking within me for the answers. I have a long road ahead of me, but I'm ready for the journey! That's what life is all about, right?
I haven't started on my list yet. It's snowing outside so I might as well start today!
Live.Love.Laugh.Enjoy!

new reminder

2010-10-27T19:55:00.000-04:00

Just finished reading the book, Skinny Bitch. I loved it! Especially the end. I had forgotten to dream. I always remember I want to be healthy. I want to be pain free. But what else. That use to be enough. What am I going to be when I grow up? What are the things I want to accomplish? What happended to my list of 100 things I want to do before I die? Not as morbid as I once thought. I am 40 now and it's time to make things happen. I started my list about 5 years ago and some of the things on the list started getting done and I got scared. I put something on the list that I really didn't think would ever happen and it did! Freaked me out. Didn't write anything else on the list after that. Face fears and live my life. It's time. So Skinny Bitch is not just about being skinny, it touches on so many health and social conscious issues.
It reminded me about my affirmations. POWERFUL. Didn't realize how powerful until I had little energy to get out of bed and had very little hope and no faith in medicine and wrote down my affirmations faithfully every day 10 times each and would often say them. I did this for months and look how far I've come. Words are power. I'm learning to use them wisely.
I've been busy, so I haven't had time to sit and write. I look back and I don't know what I've been busy doing. I need to slow down. I say that often. It's not the physical zooming around, it's more of the mind racing and really, why. I'm back to meditating. It helps. It's tough to quiet the mind. I'm out of practice.

I need to become a bit more social. I spend a lot of time in the house or with just the hubby and kids. I've let go of some stressful relationships over the summer so I'm leary of getting mixed up in new friendships. Not looking for a best friend, but I do need to get out and meet people. I use the excuse of having lupus and it being tough because of my energy level. It's not that tough. I just have to reach out and say hello. Again not looking for a best bud, not sure what I'm looking for. I'm not a phone person. I don't know. I do know I need to get out more. My next favorite is the I don't have any money. I have money for everything else though. Why do I have to spend a lot of money to get out of the house?! I'm crazy.lol I know how it's done. Smile and say hello. Listen to me, I sound like I'm going out to pick up a man!!!
Feels good to write again!
Live.Love.Laugh.Enjoy!!!

Give and Get is Here!

2010-08-23T09:19:00.000-04:00

Give and Get is Here!: "Enjoy 30% off from August 26-29 at Gap, Banana Republic and Old Navy and we'll donate 5% of what you spend to a non-profit."

New Day

2010-08-07T08:46:00.000-04:00

Well, I'm starting my day off counting calories. I'm hoping it will make me more aware of what I'm eating and where I can make changes. I already know this stuff, but doing it this way creates something for me to do.
Not sure what I'm doing with my day. Didn't go to sleep last night until after 1. A nap should definitely be in there somewhere.
It's going to be gorgeous here in CT!
Live.Love.Laugh.Enjoy!
By the way if your looking for a good summer read, try this book. I loved it!

On overload

2010-08-06T21:03:00.001-04:00

I have all these ideas running around in my head. I'm like a chicken with my head cut off. I have different projects going on all over the place. I'm tired and I hurt. I've been limping for over a month. Now my knee and my right buttock hurts. Not my hip but the ichial tuberosity. I think that's what it's called. ( I'm trying to use my big words lol). Is that a joint?I thought it was a bone. Can it truly be hurting? It feels like it. Time to get back to basics with my favorite book, if I can remember where it is!
I'm still eating healthy. I eat a lot out of my garden. I have been eating meat. Not a lot, but it's in there. I finally had a steak yesterday (and today). Needless to say it was delicious! Now I have to have my salmon and lamb on the grill to make my summer complete. I am the worse vegetarian imaginable. I should just stop saying I'm going to be one. It will happen one day. But not this summer!
Surprisingly I'm still losing weight. I try to move around more. Could be why I'm so tired. I had to force myself to sit today.
I made a great dinner. I put roasted tomatoes ( from the garden) and garlic in some homemade sauce I had in the freezer. Then I poured it over italian sausage that I browned with onions and put the whole thing in the oven for about 20 minutes. Mixed with brown rice pasta. Very good! Got the thumbs up from the kids.
Vege- corn on the cob cooked on the grill.
Well I guess I'll try to find something on TV to wind down. I watched Snoop dogg and his family on the View today.(watched it online -http://theview.abc.go.com/ ) His beautiful little girl, Cori ( 11 y.o. don't quote me) has lupus. Very inspirational.
Live.Love.Laugh.Enjoy!

In the Berkshires!

2010-07-29T08:30:00.000-04:00

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!
Live.Love.Laugh.Enjoy!

Getting there

2010-07-27T19:07:00.000-04:00

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.
Live.Love.Laugh.Enjoy!

Better day

2010-07-26T21:15:00.000-04:00

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

2010-07-26T08:07:00.000-04:00

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.
Live.Love.Laugh.Enjoy!

Hello

2010-07-21T07:33:00.000-04:00

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.
Live.Love.Laugh.Enjoy!

2010-07-20T10:46:00.001-04:00

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.

ENJOY!!!

More Tears

2010-07-19T08:42:00.002-04:00

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.
Live.Love.Laugh.Enjoy!

Having a tough time

2010-07-18T09:58:00.002-04:00

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.

In Memory of ...

2010-07-17T19:54:00.000-04:00

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!

2010-07-17T07:48:00.001-04:00

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.
Live.Love.Laugh.Enjoy!

Feeling Good!

2010-07-08T15:12:00.000-04:00

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.

Don't over do it!

2010-07-03T08:43:00.000-04:00

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.
Live.Love.Laugh.Enjoy!

Relief

2010-07-01T18:51:00.000-04:00

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

2010-07-01T09:01:00.000-04:00

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!

Oh #!*T

2010-06-30T18:26:00.000-04:00

I feel like a truck hit me and backed up and hit me again. We only spent a day in Lake George. Not because I wasn't feeling well, but because the kids were bored which I was happy of. On the ride home it really hit me. By the time we got home all I could do is lay down in the dark. This morning I ended up in my primary care's office. Both of my rheumatologist went of vacation at the same time! I ended up getting a shot for the headache. Never heard of that before. It helped me sleep and it lessened the headache a little. I so wiped out. I surprised I can even get on the computer. My advice to lupus travelers. STAY OUT OF THE SUN! There's no other way around it for me anyway. I'm going to go lay back down. I got some cool pics though. I'll post them at a later date.
Live.Love.Laugh.Enjoy!

Day 3 and 4

2010-06-29T07:25:00.000-04:00

I really enjoyed visiting with family. Madison is beautiful. Two year olds can be such a delight. They are much better as grandchildren! I spent all of yesterday on the road. Not fun. Trying to keep my feeling sick from the family. I screwed up on my meds and didn't pick up on it until Monday. Taking 5mg of prednisone instead of 7mg. Last minute pick up of 1 mg pills that I tossed in my pocketbook. I prefill a pill box so I don't know how many days I went without noticing. It couldn't have been more than 3. Needless to say the 11 hr drive to Lake George from VA was an achy affair. We switched hotels when we got here. Just a long journey. Not sure if I have recouped but we're off to see the sights this morning. This was definitely too much for one trip. I'll be happy to sit at home for a few weeks!
Finally got a good cup of coffee! Good old New England!
Live.Love.Laugh.Enjoy!

Day 2

2010-06-27T08:43:00.000-04:00

The wedding was beautiful. I had such a nice time. I did realize something. I am now part of the older group that kind of sits off to the side while the younger ones are having all the fun on the dance floor. Maybe that's when the bride and groom are in the early twenties. Anyway it was fun to watch. And I didn't feel out of place for not dancing ( aches and pains still in foot -wore a cute pair of wedges lol) because no one else my age was dancing either. Regardless, had a fabulous time with family. Now I have to get the guys up, so we can begin our next journey. Off to see Maddie! I'll add pics when I get home. If I remember!;-)
Live.Love.Laugh. Enjoy!

Having Fun

2010-06-26T08:02:00.002-04:00

Did I say it was hot in CT? OMG! It's hot down here! SC in June is no joke. I had to go back in the hotel until around 6pm. The car thermometer was registering 101 degrees outside! All the sunscreen and hats in the world weren't going to help me at that point. Luckily the hotel is lovely and the kids are getting along. It's so peaceful and that's fun for me. Caught up on much needed sleep. Just feeling like there's nothing I need to do is a vacation. I'll keep you posted. I have the wedding today, my grandbaby in NC and family in VA tomorrow! Then we're off to two days in Lake George!
Live.Love.Laugh. Enjoy!

It's hot!

2010-06-21T18:32:00.000-04:00

For those in Connecticut, I've just stated the obvious. I can't take it. My foot hurts so I can't get in the pool. Tried it. Can't maneuver the ladder. Any exposure to the sun is draining. Going on vacation in a few days. It's going to be fabulous. If I say it enough it will happen. My meat eating is at it's end. Did I mention I went back to meat? Two nights ago was the most painful night I've had in a while. Every joint hurt and there was this weird pain in my upper abdomen. Indigestion maybe?! I don't know, but i didn't like it. I don't know why I stop doing things that work for me. This is day two. I slept better last night. Still a bit achy. Had an x-ray done on the foot - found nothing. We knew that going in. The docs did mention possible surgery on a nerve in the foot. I guess I'll go see an orthopedic doc when I get back. Not thrilled. More money, more docs to tell you we don't know what is wrong. Oh and I have the typical protein in the urine - so repeat the test. I don't think I've had a lab where everything was perfect in over two years, but stilll they find nothing. Nothing can be good. I'm grateful. Let's be clear on that. I've learned to like nothing. Look how far I've gotten away from it's hot. lol
I miss coming up here. Hopefully it won't be too long next time

recap

2010-06-08T07:54:00.000-04:00

Things are going well with me and my son. We've reached an understanding. The friends I don't like aren't welcomed in my house or in my car. I've been keeping him busy doing fun and organized things, so he hasn't wanted to hang out with those friends - yet.
Went to the gyn yesterday. Every things is well except my blood pressure. It was higher than it's ever been - 150/99. I'm going to have to stop playing around and lose weight. I don't want to go on any more medications if it can be prevented. I also have to reduce the stress which I have just started to do, so that should help.
I'm going to get ready to go for my walk. I haven't done it in awhile, so I need to get back out there.
Live.Love.Laugh.Enjoy!

Friends

2010-06-03T07:05:00.000-04:00

Kids. Need I say more. My latest battle. Friends. On going battle through the years. You can't choose your children's friends. I try to protect them. Let them know that friendship is a mutual respect. I respect my friends differences, I respect their property, I respect them. And it's mutual. I like to keep my friendships balanced. I don't want to feel like I'm giving more to the relationship and I don't want my friend to feel they are giving more. I can't afford to put a lot of energy and effort in any relationship and not get anything back. I have ended many relationships for that reason, whether it be friend or family. Having lupus has taught me a lot about friends and what really being a friend is about for me. I think that's where I'm getting stuck with my kids. I want their values for friendship to be the same as mine. Am I wrong? Do I sit back and watch them get walked all over because they want friends and to me are sacrificing their ( I can't find the right word) is it integrity for the sake of having friends? Demonstrating behavior not becoming to them or their household just to be liked. I went through that. It's not fun. It doesn't feel well. At least it didn't to me. I use to think my kids were an extension of me. I don't anymore. I had another heated discussion with my youngest and I told him I was beyond angry with the situation. What's beyond angry? For me, indifference. I'm shutting myself off from it. I can't spend anymore energy on it. It's like a brick wall and getting me nowhere. I'm turning it over to my husband. Fortunately for me and him there is another parent in the home to turn it over too. I'm losing sleep. My body aches. My head is exploding. I have to close off. It hurts. I've shed my tears and I know I have more, but there's nothing more I can do. Wish me luck.

Nice Day

2010-05-29T19:18:00.001-04:00

I really wasn't having a nice day. The day I had planned for me kept getting pushed aside to do things for the kids. I told one of the boys I would give him a ride to the Renaissance Fair to join his friends. Well. We went to the wrong place three times, because the website was confusing for me and I thought it was in one town and it ended up being on the other side of the state on a college campus that has two campuses. Of course I went to the wrong one. By the time we got there, his friends were gone. I had a fabulous time. I got a henna tattoo and a cool necklace. I sat on a grassy hill with my son, eating freshly made apple cider donuts and watching two men acting like medieval warriors. It was great. And my son enjoyed it too. I did something out of the ordinary. Definitely a do again.
Live. Love. Laugh. Enjoy!

Breathe

2010-05-20T09:38:00.000-04:00

I'm taking many deep breaths. My youngest is still giving me grief. I'm trying something new. No punishment. We are going to the track everyday. He is going to run, do stairs, push ups, and anything else I can think of. He and is friend set something on fire in my house and where planning to set more things on fire and throw them in my pool. Has he lost his _ _ _ _ ing mind! I've actually been meditating a lot lately so it's the only thing that saved him. I lost it a couple of times, but not nearly as bad as it could have been. So he and his friend are now on the Madame butterfly track team ( they would die if they knew I just called it that) :-) . They were bored. Now they have something to do. Taking things away hasn't seemed to work. I'll keep you posted.

I lashed out at a friend yesterday and it doesn't feel good. I felt that she was being used. Someone asked her to do a job that I had resigned from doing because it was too large of a job for me and I felt she was overburdened enough and shouldn't have been asked. Then there were parts where it felt as if they were trying to drag me back in and I don't want to do it. Well, I wasn't a happy camper and I let her know it. It became very heated. In the end. I calmed down and realized it's not my place to try and protect her. She wants to do it because it makes her feel good. I didn't want to do it because it didn't make me feel good. It's okay. I apologized to her. At least I think I did. I know I told her I loved her, but I wouldn't be helping her. That part felt good. Exercising the power to say no. I don't have to do something I don't want to do and it's alright if you do. There's no guilt for me to want to help out. My time is precious. My energy is even more so. It should be spent doing things that make me happy. My new track team makes me happy. :-) She and I will have to go out to dinner and just chat like we always do.
Right now I'm going to rest up for my day at the track. I actually walk around the track while I'm there.
Live.Laugh.Love. Enjoy!

HAPPY MOTHER'S DAY!!

2010-05-09T09:15:00.000-04:00

The word of the day is Gratitude. I am so incredibly grateful to see another day, to smell another flower, to pull another weed. I am grateful to have the ability to pick up another sock, wash another dish, and take a deep breath. I woke up this morning with a sense of gratitude. Then I walked out of my bedroom. Just because it's mother's day doesn't mean my world is going to miraculously be different. I made breakfast for my husband, who works at night ( something I try to do everyday if I feel well). That's our time to talk before he goes to bed (he gets off work at 6:30am). Then a made myself a cup of tea ( I can't eat breakfast that early) and escaped to the deck. It was an escape, because I couldn't face the dishes, the socks on the floor, the weeds in the garden. While sitting on the deck, enjoying the breeze - it's kinda cold this morning, I remembered my feeling of gratitude I woke up with this morning. My joints don't hurt, my headache is low ache, my energy level is decent. I'm an grateful for this. Today is a fantastic day. I am grateful. So I picked up the sock, washed a few dishes ( in stages, because that's how I have to do it), and pulled some weeds. I know what you're thinking. Why not just have the kids do it. It's Mother's Day. I am grateful for the fact that I can do it. So while I can I will. I live in a constant state of the unknown. I guess everyone does, but the thought is always there for me. So I live my life to the fullest while I can. I do what makes me happy at the time. I am grateful. I'm off the buy some Preen for my weeds! Have fun on your Mother's Day!
Live. Love. Laugh. Enjoy!

Feeling Mellow

2010-05-03T08:25:00.000-04:00

Good morning! Today I realized that I can at last listen to other peoples' issues and not feel like I have to make them my own. It's so freeing. I can sympathize but I don't feel engrossed. I can walk away and my peace and tranquility (don't want to call it sanity) is still intact. That's a heavy burden when you take on everyone else's stuff along with your own. Again, what was I thinking! I feel too much. I have remembered to mellow out. Take things in stride. Release. Let go. Feel free. It's nice (and without drugs!!!). That's all for now. Be kind to yourself today.
Live. Love. Laugh. Enjoy!

Having a Plan

2010-04-30T08:55:00.000-04:00

Part of living with lupus is having a daily plan. I've gotten away from this. Writing down what it is I want to accomplish for the day. Today I have all these ideas of 'what I'm going to do today. I started by taking the kids to school, watering my garden, washing the dishes( my lovely dishwasher is leaking) and sweeping the kitchen floor. I'm pooped. I still want to plant more things in the yard, plant my mint in cups, go to home depot with the hubby and get fencing to complete the backyard, have him cut down a few things, and begin to open the pool, along with finish the laundry, mop the kitchen floor, clean the bathroom, the list goes on. What am I, crazy!!! I know I can't get all of that done. I'm amazed I got done what I did so far. Oh and I still have to fit squats and my walk in there somewhere. I desperately need a list!!! I usually write down my list with four columns. Tasks, errands, calls, and groceries. Some of the things on the list get delegated to someone else and I pick about 3 of them for me to accomplish. The rest wait until tomorrow. It works, until I lose the list. :) I'm not so wiped out and I don't have all these ideas swirling around in my head. I'm sitting here drained. But this is my life. I accept that. I haven't eaten breakfast yet, or taken my medicine. Hmm, I'll dig up energy from somewhere to get out of this chair. While I'm here I'll write my list. It's going to be gorgeous in Connecticut!
Live. Love. Laugh. Enjoy!

Aah

2010-04-29T06:59:00.000-04:00

Good morning. I sit here with my pellet stove on and a warm cup of nettle tea and all is right in the world. For the last two weeks I've been on a meat frenzy. Yesterday the hubby and I drove 72miles for a burger. There is no Sonic Drive In in Connecticut, so we crossed over the border into New York state. It was worth it! I am so bad. lol I was so stuffed afterwards. The kind of stuffed that if we hit a bump, it was all coming back out. I vowed that all animals were safe from me from here on out! I am dusting myself off and starting again because I know I feel better when I don't eat meat.
I've been exercising too. I went to the docs last week and she wants me to loose 10 lbs in 3 months. Doesn't sound hard, right? I've been trying to do that for over a year. It's time to do things differently. A friend I met that lives in Colorado, told me over two years ago to eliminate sugar and salt from my diet. It would make me feel better. I thought, oh no, I've given up enough I'm not giving up that too! It's time. I caught a glimpse of myself last night without clothing and my immediate thought was I look like a walrus. Then I thought a beautiful walrus. lol But a walrus. What's wrong with a walrus? Someone has to love walruses. Well I don't want to see a walrus when I look in the mirror. Don't get me wrong. I love me. I love all animals - remember they are safe from me. ;) But my body needs some work. I'm going to do it at a pace that won't land me in bed but still see results. I've started with 10 minutes of squats last week. Not easy for me, but I did it. This week it's 120 minutes of yoga along with the 10 min. I usually walk 2 miles about 4-5 days a week. It's another process. It's going to take time. Not going to happen over night. I'm reminding myself of this, because I always want immediate results. I'll keep you posted. I'm ready to change my picture.
Live. Love. Laugh. Enjoy!

It Cold

2010-04-28T08:11:00.000-04:00

It's cold. I have a cold and my karma is off. I feel very off balanced. My son is driving me crazy. Kids at 14 just don't get it. He keeps saying I'm harping on the negative and I know that's just because I put him on punishment. I've tried the positive reinforcement. The level of disrespect was getting out of control so I had to let him know who still runs the show. But do I really. It's all about choices. His choices. Right now he's making a few wrong ones, but it's still his decision. I still have rules in my house that have to be followed. They haven't changed for the three other children and they are just fine. They'll probably all end up in therapy and it'll be my fault. :) But the rules remain in place. He's a sweet kid. I don't know. It's hard as a parent to step back. I know at this age it begins the process of letting them become their own person. I've given him enough tools that he is a good person. ( My husband helped out too!) It's all about me people!!! At least now I'm able to laugh. Too serious this morning. I have to get something warm in me and turn on my pellet stove. It's so sunny out I don't want to turn it on. My fingers are starting to turn blue. There it's on. How simple was that. I make things much harder than they need to be. Keep life simple. Live free. Maybe I should abandon rules and restrictions. Do they hinder us? Do they cloud our judgment? If we go on instinct we would always make the right decisions for us. Something to think about.
For today Live. Love. Laugh. Enjoy!

New Blog!

2010-04-27T09:44:00.001-04:00

Hello! I started a new blog! It can't always be about me!! This is something for us with Lupus. Check it out - www.lupuswhatsupwiththat.blogspot.com. There is a link on the right. I'll still be writing in this one also.
Hope to see you there!

Today!

2010-04-19T08:00:00.002-04:00

Today is an amazing day! It's my grandbaby's birthday! Happy Birthday Maddie!!! Love you!
It's gorgeous outside, sunny and crisp! Two favorite things for lupus people. ;) I'm going for a walk today, combined with a little jogging. Yes, I am doing it people!

Last week I went on a meat frenzy. I had pork roast on Sunday, Popeyes fried chicken at least twice, and a double cheeseburger and a half ( not on the same day). All week I was so drained. I had some stressful friend issues going on, but couldn't believe my body was reacting to that in such a severe way. With lupus we know stress is not our friend, but this was an I'm tired after 8 hrs of sleep. I couldn't do my walks on some days. The days I did, it was a struggle and not invigorating at all. By Saturday, it clicked. I had eaten meat all week! Sunday I was good and had a little more energy as the day went on. This morning I'm feeling oh so much better!
I'm all about love, compassion, joy, and acceptance. It's a new day. Embrace it. Make it yours!
Live. Love. Laugh. Enjoy!

Having Fun

2010-04-08T07:06:00.000-04:00

This past weekend was a blast! I took the kids to Boston for an Anime Convention. What fun! To see all of the people of all ages in their cosplay ( they don't call them costumes). They are so brave. Let me rephrase that, they're confident and totally okay with who they are. I love it!
Went to an awesome lupus support group meeting in Greenwich. Very positive. Good feelings!
Don't ge me wrong I'm tired as hell, but it's good. I did something good and fun. The fatigue is bearable because it was so worth it. I'm up and going, just resting a lot more in between this week.
I started my Mary Kay business again! I'm excited! It's about making others happy and getting joy out of seeing their joy. Love it!!
Well, I have a kid in my ear saying, "Can we go?" One day he'll learn is not always about him. I'll let his first real girlfriend fill him in on that one. :)
Live!Love!Laugh!Enjoy!

the prankster

2010-03-22T17:56:00.001-04:00

Last night I cooked cubed steak ( chicken fried steak) for the family. It bombed. For some reason it was sweet. My husband told me I need to go back to eating meat because I never know what went wrong. Today I go to make fish and dust it with flour. Well, the flour didn't look right and when I thought back it didn't look right last night. I taste it and it's not flour but confectioners sugar! The canisters were switched around on the counter. I never label them because I know the difference by looking at the texture. ;=)
As I'm telling this to my son Darrell he starts to laugh. Months ago he switched my dishes around and had me thinking I had a ghost in the house, so I told him he could never switch the dishes again. His words were, " you never said anything about the canisters!" Well the mystery of the souffle/cake is solved. Would anyone like to have a 16 yr old?
Live.Love.Laugh.Enjoy!

warm weather

2010-03-19T09:10:00.001-04:00

I love it! I''ve been taking advantage of the warm weather. Getting some walking and bike riding in. I must say, the bike riding isn't my favorite. It hurts like hell, but it'll get easier. It's great to get out in the fresh air. As always I have to be careful with the sun, but so far so good, and I'm not letting it stop me! Soon enough I'll be doing the big hats and sunscreen and you know, that's alright too.
Live.Love.Laugh. Enjoy!

lupus sucks

2010-03-16T08:43:00.000-04:00

I called. Again, the doc's not sure. Give it another week and see what happens. If the problem persist go back up on the prednisone and see what happens. The disease of the unknown. Don't cha just love it. It is what it is. I'm grateful I can still get around. I'm grateful I have an outlet. I'm grateful I can still type! =) I'm grateful for life. When I start walking into walls we have a problem. Oh wait- I do that too! =) You gotta laugh.

Live. Love. Laugh. Enjoy!

memory

2010-03-16T08:25:00.002-04:00

I've been having memory glitches again and I'm still losing conversations. The scariest is when I'm in a car and I don't know where I am. Once I was driving and couldn't remember the way to one of the kids' friend's house. All of a sudden I'm driving there and I don't know the way. It feels like I'm having a dream and I can't find my way out of a maze and I get that panicky feeling. It lasted about 20 seconds. Another recent incident, I was riding with my husband, I'm looking out the window as he's driving and all of a sudden I don't recognize anything and I don't know where we are. I had to ask him where are we. He gave me this strange look and said on Dixwell Ave. Very popular street. I drive down it at least 4 times a week. My son brought his girlfriend over to meet me, because he said I told him to. I can see my saying that, but I have no memory of the conversation. Pretty girl by the way and seems to be nice (you can't tell from the first meeting). I haven't called my doctor. I'm not sure what they can do for it. Maybe I should call and see if it's because I'm decreasing my prednisone. This sucks, I'm never going to get off of it. Oh well. I have to be a big girl (no pun intended) and do what I need to do.

good morning

2010-03-11T07:09:00.001-05:00

The pain in back was better by Friday. A little yoga goes a long way. I'm getting back in tune with my body. I stopped working with my clean eating coach and a regressed some ( not much). For a vegetarian I wasn't eating many vegetables. Getting back on track. I lost my train of thought here.This post was started and intended for yesterday and I stepped away from the computer and forgot about it until this morning. Oh well.
Have an awesome day!

projection

2010-03-11T07:03:00.002-05:00

Just when I thought I was okay with my self image, I realize that I'm not. I was also projecting my disgust with my body on to my husband. I imagined that every time he looked at me, he didn't like what he saw. Yesterday when he left the house, he didn't kiss me goodbye. It rarely happens. I took that action and ran with it. To give you background - he was late for his pool match and he was irritated with the kids because they weren't home to bring in my new to me washing machine =). I took it as, he's disgusted with looking at me and he's no longer attracted to me. Well. Luckily for me I don't go too far with these thoughts and I do my best thinking in the wee hours of the morning. ( I don't stay up all night I'm just an early riser). I've come to the realization that I'm not as okay as I thought I was with me. Oh yeah, I love the fact that I am strong in character, I'm sincere, I love helping others, I'm persistent, I can work things out (it takes me longer than it use to), I have a sunny disposition. I'm all that. =) But I still don't love the person I see in the mirror. The physical person. Now that I look back, I never did. Even when I was 160 lbs I wanted liposuction for the pouch in my lower abs and I wanted to get rid of the love handles I thought I had. When I was 130lbs ( many moons ago - we're talking late teens to early twenties) I wasn't happy. I wanted a big butt. Got it now! Whether or not my husband likes what he see's isn't the issue. I don't like what I see. How do l love the whole me? I can lose weight, but I don't think that is going to fix the problem. I'll feel good about it. Who wouldn't? But I will still find something wrong.
I first better stop projection my feelings on to others. I say this often. It's not about them. It's all about me!=)

Live.Laugh. Love.
Have an awesome and powerful day!

Pain

2010-03-04T22:06:00.001-05:00

I've decreased my prednisone and my back hurts so bad. I'm trying not to be a baby and suck it up. I can't keep running to the doc for shots. I'll wait until tomorrow and see how it goes. The accelerated pain just started this afternoon. Maybe I slept wrong. I know I'm reaching for excuses, but who knows. I don't think I'll make it to yoga class tomorrow. I will try a few stretches and see if it helps. I'm not in so much pain that I can't think clearly, so that's a plus. Taking it day by day. Always a new adventure;). Just happy to take the ride!
All in all still having a relaxing vacation. It gave me time to think and evaluate my activities and see what's important. I feel good.
Goodnight

Another Day

2010-03-02T15:31:00.001-05:00

Today isn't as relaxing as yesterday. Yesterday was about me. I got a chance to read my romance novel and do nothing. Today I started thinking about a topic I said I wasn't going to deal with all week.I haven't been able to relax since. I just feel really tense and it's driving me crazy. I really need to resolve my issue and stop the avoidance. If I'm going to get worked up like this I need to deal with it and move on.

Day 1

2010-03-01T07:25:00.005-05:00

First day of break. Trying not to stay irritated. My youngest seems to know how to push my buttons. I've been taking many deep breaths this morning. Everybody is off to school and I'm going to relax a minute with a cup of Milk Thistle tea ( good for detoxing the liver - see the link at the bottom and tea benefits on the right- before drinking check with your doc it may interfere with certain meds) and maybe even go back to bed!

Time for me

2010-02-28T12:20:00.002-05:00

I'm taking a week off. I know. I'm not working. I still need time off. I've committed myself to so much, I feel like I'm constantly doing something. It's too much and I'm not enjoying some of it. Time to regroup. See if I'm just getting overwhelmed and confused or if I truly am not enjoying some of the things I'm doing. A week of just me time. The kids are back in school ( my oldest son went back to college in Miami!) and I have the house to myself during the day. No lupus. Just enjoying me. Now I'll have time to write and keep up with my blog ;)
Enjoy!

Cranky

2010-02-25T08:08:00.001-05:00

It's that time of the month and I'm so cranky. Feeling down right mean. I know boosting my protein intake helps with PMS. Sometimes I like the freedom of being mean. Today it's taking up too much energy and I'm exhausted at 8:07am. Time for peanutbutter and banana on a rice cake and a warm cup of tea!
Enjoy your day!

Feeling Fabulous!

2010-02-23T20:29:00.000-05:00

I had to get a cortisone shot on Friday. I was having a lot of pain in my hip and having a hard time walking. This was my first shot. It didn't work right away like I had heard it would so I was nervous. But the next day- yeah baby. I was up and ready to go. I moved around so much that I had forgotten about all the other aches and pains and the fatigue. It all came back but there was not crash, I just had to slow down.

My thyroid test came back normal so the hair loss is not due to the thyroid. Not surprised. I'm O.K . with the hair. I didn't fall in love with the dreads until the second year so I just have to wait it out.

I'm tired. I feel like I have so much on my plate. I put it there. I'm confused about what to do. I'm handling it all so far. I guess I still feel like I have to do something. I can't just be. I have to get involved and with me that generally means take charge. I'm not a delegator, I'm a worker bee so I always have to do everything. I use to like it that way. Is that a controll issue?:) Now it doesn't sit so well.

What happened to feeling fabulous?! I do feel fabulous. I'm mentally drained.

How could I have forgotten!

2010-02-11T08:34:00.000-05:00

My hair started falling out again. I'm putting my dreads back in ( hairstyle where you don't comb your hair). I actually loved my dreads. I cut them out about a year ago because I thought the heaviness was contributing to my headaches. They weren't and of course it was too late at that point. I figured I'd give it a go with new hairstyles. Well in december my hair started coming out and by January I was getting bald spots. Luckily my hair is thick so it isn't noticable yet so I'm hoping by putting the dreads in now I can stop the hair from falling out. I had dreads for 3 years and my hair didn't fall out in the entire 3 years. I'll keep you posted about that too.
I'm not going to go into the causes because we all know with Lupus it can be many things. I'm going to focus on a solution and later I'll worry about the rest.
Have an awesome day! Live Love Laugh!

It's been awhile!

2010-02-11T08:20:00.000-05:00

I've been meaning to write for some time now. Life gets in the way sometimes.
I find myself in the fight mode again and it's exhausting and unnecessary. I recently signed on to something that I'm not sure if I believe in. I need to gather facts and make a decision. I don't want to fight for something that's never going to happen. Does this make any sense? Probably not. What I need to remember is I don't have to do or be any place that doesn't feel right. I've been listening to my body for awhile now and it works for me. I can't stop now. It's okay if I'm not a fit with this group. Some of our ideas are the same and the ones that aren't I can do my own thing. I guess it doesn't have to be all or nothing. Writing is always good for me. I seem to work it out on paper or shall I say on computer. If this has helped anyone else I'm happy and thank you for listening to me ramble. :)

On to other things. I've been feeling fabulous with the veges and grains! I do have to admit I have a weakness for fried chicken. I love the smell, the look, the taste, but not how it feels after it enters the system. Every other month I break down and have a taste. I'm in heaven for all of 3 minutes. Then I want to throw up and I have wicked heartburn.

I made these awesome gluten free almond butter chocolate chip cookies yesterday. I got the recipe from Clean Eating Magazine. It's not on the website or at least I couldn't find it http://www.cleaneatingmag.com/ but if you're interested it's in the latest issue. If you like chocolate your going to love theses.

I'm planning on fasting this weekend to cleanse the body. I tried it once. I made it a 1/2 day. I can't remember if I felt better. I probable didn't.We'll see what happens. I'll keep you posted!

Author Symposium - hosted by LFA, CT Chapter

2010-01-10T09:10:00.001-05:00

First Annual Author Symposium

February 6,2010. The Water Club, 545 Long Wharf Drive New Haven , CT
10am - 4pm

Come hear Donna Jackson Nakazawa, author of The Autoimmune Epidemic! Her book focuses on how to protect your immune system while exploring possible causes and potential cures for nearly 100 autoimmune diseases including Multiple Sclerosis, Lupus, Crohn’s Disease, Type 1 Diabetes, Rheumatoid Arthritis and other autoimmune related diseases like Fibromyalgia and Chronic Fatigue Syndrome! THE AUTOIMMUNE EPIDEMIC combines up-to-the-minute research emerging out of dozens of today’s cutting-edge scientific labs with the front line perspective of autoimmune sufferers.

Also presenting is bestselling author Bernie Seigel, M.D., author of Love Medicine & Miracles in which he shares his experience with exceptional patients and how powerful the will to live can be and the physical benefits derived from accepting one's mortality and healing your life. The idea of unconditional love as being the most powerful stimulant of the immune system is a common theme in Seigel’s work.

Dr. Joseph Craft, Yale University School of Medicine Professor of Medicine and Immunobiology, Chief of Rheumatology Section, and Director of the Investigative Medicine Program, directs a research laboratory devoted to understanding T lymphocyte differentiation and function in systemic lupus erythematosus (SLE, or lupus) will also be presenting at the symposium. His research has been continually supported by the National Institutes of Health since 1985, where he is a current NIH MERIT award recipient, and he is the author of over 140 scientific publications.

Last, but my no means least, clean living coach and owner/founder of Healthy Endeavors- a health coaching and consulting firm, Wendy Battles-Plasse, MA, HHC will be speaking on a nutritional approach! Her teleseminar “Money Saving Meal Planning: Quick, Healthy and Delicious Meals on a Budget” taught individuals a simple system to change their mindset about meal planning and how to plan weekly meals that are both healthy and have an eye on the bottom line. Along the way, Battles-Plasse shares a multitude of resources, tools and forms to make meal planning systematic week after week. She has also developed a simple Money Saving Meal Planning Home Study Course.

Coffee and light snacks will be served in the morning followed by lunch in the afternoon.

PURCHASE TICKETS ONLINE ( Check out the link on the right!)

EMAIL: office@lupusct.org

PHONE: 860-269-6240

We look forward to seeing you there!!

Getting Out!

2010-01-10T09:02:00.000-05:00

This year it's time for me to get out and interact with the world. I do it on occasion. But for the most part I'm a home body. I have been for years and the past 2 years forget about it. My not feeling good was the perfect reason to not have to interact with anyone. Don't get me wrong I love people. I love to talk. I just don't like leaving my comfort zone. I don't like to try new things and meet (initiate meeting) new people. Every day I am going to get out and talk to someone new. Don't have to make a new friend, just talk. Say hello. Smile. Be a part of the world. I went to a mixer last night. A fundraiser for the Lupus Foundation. It promised to be an awesome night. It was at a family bar I guess. Very weird set up. It looked like a bar. The name of the place is Bar. There were three rooms with bars in each. Serves food. But there were kids everywhere. Ages 5-10. I don't know. Any who. Had a nice time. I stayed for an hour. I got there at 6. Light crowd at that time. As people started to come in the music got louder and the voices did too and it became too much for me, but before that I came out of my comfort zone and made light conversation with those at my table. Of course everyone at the mixer( we had our own seperate area) was college age. I had my oldest son with me and he assured me that I fit in .:) Isn't he cute! All in all a wonderful night out.

HAPPY NEW YEAR!!!!

2010-01-01T07:54:00.000-05:00

Happy New Year! May this year bring you many new and wonderful firsts!
Love. Live. Laugh. Enjoy!

Happy Holidays!!

2009-12-30T07:12:00.001-05:00

The holidays have been very stressful in the past as they are for most people. This year was amazing. I didn't shop for any of the boys. I gave them money in a nicely decorated envelope ( decorated by yours truely). They loved it! It helps that they're all teenagers now. We had a nice family dinner, played Uno, watched television and talked. I cooked lasagna, one for the meat eaters and a delicious spinach and kale one for me, garlic bread and a salad. Very low maintenance, but satisfying. Because I have lupus I have to destress ( is that a word). Fighting crowds and giving disappointing gifts that have to be returned because it's the wrong size, not the right style or they have it already is not my idea of fun. Give the gift of money and family. Makes my life easier. I was able to sit back in front of the fire, warm and cozy, with a cup of herbal tea and watch the holiday cartoons. I haven't done that in years without having to worry about what I had forgotten or what was left to be done.
Happy Holidays from my family to yours!!!

Loving Life!

2009-12-18T07:51:00.001-05:00

I'm truely happy. I've only felt this way a couple of times in my life with out any help:). And even then it only lasted a few hours. Something would alway happen and blow my feeling good to hell. This is different. So maybe I never felt this way. It's not a mood. It's an overall well being. The aches and pains are still my comfortable friend. I say comfortable because it's been around for so long I know it and all it's quirks, like a childhood friend. Just like my childhood friends I accept it for what it is and I don't let it interfer with me being me. I still yell at my children, so it's not the cloud nine of the Celexa world. I say my piece and I'm done with it. What happened? Why now? Is it my becoming a vegetarian? My research into Ayurveda? Am I a drug free hippy?:) I believe it's all of the above. I've learned to be grateful. Truely grateful for everything. To be happy with what I have.
I'm still making my scarves. It's funny. My husband is always thinking of business opportunities. (I love him for that). My scarves have gotten better. Now he's thinking of labels." We should get you labels for your scarves." I just looked at him and smiled. The scarves are recreation. Made from love. To give me something to do with my hands. I don't have the patiences or skill to market them, nor do I want to at this moment.
Winter is upon us and my herbs are growing. It's amazing. The sage I couldn't grow in the spring and summer is actually growing now!
Live. Love. Laugh. Enjoy your day!

Planting

2009-11-29T08:13:00.000-05:00

I've decided to bring spring to my home in the winter/fall. I'm planting herbs and I bought a plant. I noticed I have no plants in my house. I planted herbs in the spring and then brought them all outside. Now I want to bring life and color to my home ( not just on the walls). Last year I wanted to plant herbs to make my own teas and oils. One thing led to another and I forgot my purpose. I'm back on my mission. Slow down, enjoy nature and take care of my body and those around me ( they have no idea what's in store!). I have to find my notes and reacquaint myself with herbs and their uses. I started drinking milk thistle tea again. Good for helping out the liver. An organ that we don't tend to think about until it acts up. It works so hard, I'm going to help it out so it doesn't act up! Be happy and smile!

Today

2009-11-25T08:09:00.000-05:00

Today I get my car back! Horay!! I've been without my car for about a month. Transmission problems. That's over now and I'm on the road again. I did enjoy not driving though. I got a lot of walking in. I slowed down and took care of me. I'm going to keep it this way. Take a walk. See colors. Hear the noise of traffic. Notice other people. Really see what's around me instead of zooming by. Live for today!!

Vegan or Vegetarian

2009-11-24T09:18:00.000-05:00

A vegetarian eats eggs and butter, right? I can't remember. At any rate my body feels so much better when I stick to just vegetable, soy protein, brown rice, small amount of bread (very small). I over indulged on apple pie Sunday ( you have to when you live with 4 men if you want get your fill). I can rationalize anything. Any way, I decided to just eat vegetable on Monday. Take my calorie count way down. I really felt good. I consumed less than 900 calories and I ate just enough. I even ate tofu. I've been buying tofu a lot lately. Never eat it. Finally decided to try it. In the most bizarre dishes. Collard greens. Traditionally you put some sort of fatty or flavorful protein in the collard greens to jazz them up. I put the greens in a food processor to chop them up. Sauted them in olive oil, garlic and crushed red pepper flakes. Seperately I sauted the tofu ( cut up) in olive oil, onion powder, garlic powder, I'm missing something (sorry) until they were golden brown and then added it to the greens. It was delicious. Only 91 calories for 1 cup. I need to do what I gotta do. Is this how people become vegetarians? I'm not advocating for vegans, I just know that I feel better without the meat. ( I shudder thinking about it). I loved meat. I love me more. Wish me luck and good eating!!

Goodmorning!

2009-11-23T08:28:00.000-05:00

I can't believe it's been over a week. The holidays have been weird for me the last few years. I like being with just my family for the holidays (my husband and kids). I'm not a crowd person anymore. I like to make the holidays special. I decorate, do the traditional dinner, over eat. But then I want to relax. Maybe with a good book. Or even football with the family. My house is a dry house. I like it that way. When I entertain others I feel like I have to provide alcohol and that's just not me. I was going to extend invitations to dinner to family and friends, but I decided not to. If I have people drop in I have plenty and I never turn anyone away. I like drop ins on the holiday. They come in, share joy and leave. Not all day noise, but in spurts. I can handle that. As my children get older the holidays will change and their families will be added and it will be nice because they'll know what to expect. My energy level is shot. I hope my enthusiasm for the holidays carries me through the meal prep. I plan to do it in stages. I'm starting as early as Tuesday with homemade cranberry sauce this year. I've found some good recipes on foodnetwork.com. Maybe I'll check out epicurious.com. They always have good recipes, but very involved.

Teenagers

2009-11-13T07:14:00.000-05:00

Living with teenagers is a trial. You would think because I have all boys at home it would be easier than girls. It's not.You still have the friends issues. To add to that you have the parents or shall I say mom of the friends issues. I am a very liberal and open mom. I do have rules. But for the most part I'm easy going. I don't do stress well as we know and I have learned to pick and choose my battles- after all we have four kids. So when you mix mom's feedback about kids and who's not allowed in who's house it becomes a mess. My son just wants to have two friends over to play video games and eat chinese food. I've changed plans once already saying he could have one friend over at a time after I had spoken to the two parents and said they could both stay. Got a phone call from a mom complaining about the other kid. After talking to my son I did realize that it's not fair. To exclude one kid based on the back in forth phone calls instigated by a mom. So now we are back to two kids and I'll leave it up to the mom to decide if she wants her son here or not. Such drama. I'm at a place in my life where I don't want or need it. I'm going to have a lovely night of tea and crochet my blanket.

Volunteer for Lupus

2009-11-11T16:33:00.000-05:00

Hello! Anyone that has been following my volunteer for lupus blog , I thank you, but I have recently changed it to a closed blogg for the Hamden Walk for Lupus Now committee. Hamden is a lovely town in Connecticut. Anyone interested in joining this committee can feel free to contact me through this blogg and I will send you an invitation to gain access to the other. Sorry for any inconvenience.

Inspiration

2009-11-11T07:22:00.001-05:00

Inspiration comes in strange forms. My latest. Pamela Anderson. Who would have thought. It's not suprising for many. She's beautiful with a killer body. For me the inspiration is taking care of yourself and taking care of family. She loves her kids. A great mom- if she wasn't we would have heard about it! She eats all natural (she's a vegetarian) and she's taking care of her. She continues to get up and do what she has to do reguardless of what is writen about her and she never changes her style. She is who she is. How can you not get inspired. So this morning I got up, did light yoga stretches, crunches -horay - talk about being positive:) and I meditated. The kids have no school today so we will paint as a family. This has actually turned out to be fun. They get to goof around with each other and we all get a chance to talk with no one running out to do something else- plus I get a beautiful room. So today I am inspired by Pamela Anderson. Not for her beauty and body, but for the woman she is - we all are!!!!
For any guys reading- you can be like Pamela too!!
Laugh. Love. Smile. Enjoy!

Here's a pic of me and the boys 2 yrs ago. They're much taller now! And I was blonde!!

whining

2009-11-10T10:15:00.000-05:00

Lately I've been finding myself doing a lot of whining. I've been complaining about everything. It felt like nothing was going my way. Wasn't thinking positvely about anything. It's time to stop. It's more draining to complain. I have to stop fighting. Whenever I get in that mode I fight against everything. I've been fighting with the kids, picking on my husband, and the best - fighting against lupus- for lupus- all the same I'm fighting. My kids are going to be my kids. It doesn't mean I have to accept disorderliness in my domain, they still have to respect my space, but I don't have to fight about it. My husband - it doesn't mean I have to accept disorderliness in my domain, he still has to respect my space. See a pattern:). I can express myself without the tantrums. Yes I still have them at 39 yrs old. I'm intouch with the kid in me! I can advocate for my disease without it being a fight. I can accept my disease and live a lot freer without fighting it. Everytime there's as set back I go into fight mode. I guess it's normal. Shake it off. Move on. No whining. It's no one's fault. I think that's it. I want to blame someone and there is no one. Deep breath. Smile. Life is Good!!! I really am grateful. I have a wonderful family. I have good friends. I'm able to get around. Here's a new picture I think I'm going to frame. I took it on my deck. I'm still creative. Enjoy!

The Me Nobody Sees

2009-10-31T07:59:00.000-04:00

Sometimes I feel like I'm crazy. There's always something wrong with me. Now I have the dizziness that's not going away. It's not vertigo ( at least I don't think it is), I've had that before and it doesn't feel like that. It started with the BP meds and now the docs say the dizziness should be gone by now. Well, it's not. Of course I have blood work done and everything is normal ( alittle low on iron, but nothing to be concerned about they say). Now I have to go for a MRI. I don't worry about those anymore. I've had so many and I get them yearly. Nothing's changed since the first one. Yes they actually found something on the first one, but no one can agree what they found. So they watch. Yes I've been to several neurologists and got rid of many. Still interviewing:). My social worker ( I see one and she's great I highly recommend it) wants me to go back on antidepressants because I was the happiest she's ever seen me. My PCP wants to see how I do without them. I'm a bit confused. I love how I felt on them, but I know it's artificial-chemically produced-not truely me. I want to be the person I am on the meds. I want that person back. I see glimpses of her. I can pull her out when I'm around people. Very upbeat, always smiling. You'd never know the pain, confusion, and now dizziness that's behind the smile. But I stay positive through it all. I meditate, I do yoga, my hot oil massages, and drink a ton of tea:). I try always to think positive, speak positive, do positive. I say try because I'm human and slip up from time to time. I'm sure I'm not the only one that feels this way. And quite frankly the more I write the more I'm OK with it. I had to read what I just wrote because I couldn't figure out what I was OK with. I'm OK with not being so upbeat all, and I stress all, the time. It makes me more reflective and appreciative. I feel like I'm a deeper person. More incitive and intuitive. I think I'm going to stay off the antidepressents for now. People need to see the real me. I don't need to hide. This is who I am and I love me. Have a wonderful weekend! Thanks for letting me share!!!!!

Volcano

2009-10-27T07:25:00.000-04:00

I feel like my body is a volcano ready to erupt. I'm the little villagers living in fear of making the volcano angry. I feel myself starting to regress. Just slightly, but I feel it. I've slow down the activities that I had on my plate, for fear of overdoing it and ending up in bed in agony. How do you battle this fear. I used to call it respect for my body and maybe then that's what it was. Well I have over worked it, disrespected it and now I fear it. WOW. Trying to get back to loving my body and respecting it. I haven't strayed far from it, but it definitely wasn't my first priority lately. It's time to make a daily routine of yoga, meditation, and hot oil massages in the morning. I've been eating home cooked, non processed foods for a month now and cutting back on the foods that make me sluggish or add to the pain. Now it's time to cut them out completely. Again fear of the VOLCANO. I want the pain to stop. I hear of people with lupus who have gotten rid of the pain for the most part so I know there is a way. Everyone is different and I have to find my way. So I'm back on my Ayurervedic journey. The books are very confusing. I'm going to trying tackling it in chunks.

A New Day

2009-10-25T07:37:00.000-04:00

I had a good day yesterday.The pain was down to a minimum. Of course I went out and tried to get some shopping done. I made it to three stores! I had such a good stretch of decent days that I forget I have to take each day as it comes. Today is a new day. I'm going to find a balance in my activities. Wish me luck!

Dishrag

2009-10-23T06:55:00.000-04:00

I feel like a washed out dishrag. I am worn out. Last night the pain was so intense I thought I was going to throw up. I was in the car driving( when will I learn to say no) the scenes going by were irritating and then the sun went down before I got home. The lights from everything, on coming cars, brake lights of cars in front, street lights, traffic lights ( I think I named them all), were making me so sick. I had to roll down the windows and cover my eyes every time I was able to stop the car. I knew I couldn't throw up, because if I did I would have to go to the ER. When I got home I ate ( I can eat threw anything, it's amazing!), and layed down in my room in the dark and yes in that order and I ate in the dark. After laying down for a few hours I was able to tolerate the light a lot better. The headaches were still there. There always there. This morning I'm hoping for a better day. The plan is to take my neurotin consistantly, I'm up to 3 times a day, it'll make me loopy, and crochet my crooked scarf. I'll take a picture of it later so you can see it. My husband said I should turn it into ear muffs, the kind you wrap around your head:).

You Can't Be a Quiter

2009-10-21T06:28:00.001-04:00

How many times have I heard that. That one statement puts so much pressure on me. I can't believe I've repeated it to my children. Note to self, correct it. I probably won't remember so Des if your reading remind me:). Knowing my limits and recognizing when I going above and beyond what I'm capable of. When it's no longer healthy and I am in pain because of my actions. It's time to call it quits. Nothing should jepardize ( i know that's wrong) my health. My mission has been to lead a much simpler life that is conducive to good health ( I am butchering a ton of words today!). It feels good to write it. Take a deep breath. I don't think I've been breathing lately. Breathing correctly. It's all about feeling good. Life is too short to have to....I just lost what i was going to say. Oh well we all can fill in the blank. I need positive energy. There isn't a medicine out there to make me feel good or better. Nothing to get rid of the headaches. I am not going to add stress and make myself feel worse. Not worth it. I have enough everyday stress I can't get rid of. Kids, husband, dog:), me! The rest of my life is in my control. If it doesn't feel good, don't do it. I'm giving up too much valuable time and energy that could be spent enjoying my children, husband, dog, me! Not in that order either. I come first! I'm still taking deep cleansing breaths and you know what, it feels good!!! Enjoy your day!

admitting to others

2009-10-20T04:32:00.000-04:00

Yes I know it's 4 in the morning. I went to sleep early because I'm still not feeling well. That's such a funny statement these days, I'm not feeling well. When am I ever feeling well. I feel worse than usual. I am still doing the adjusting to medication dance. Take one for 4 days see how you feel if it doesn't work we'll try something else. I told the doctor I couldn't afford to keep doing that. I think she listens, but now she wants me to go back to a medicine that I was on before. I stopped taking the other medicine for a reason, but I can't remember the reason. I started a journal at one point, but then I forgot to write in it and now I don't know what happened to it. Are you as confused as I am? My latested med dance is blood pressure pills. My body just doesn't tolerate meds. I don't even read the side effects anymore, because I thought I was getting them because I read about them. I know now that is not the case. I'm off topic. I had to admit to my husband and kids yesterday I couldn't drive. There are times when I admit to myself I can't do something. It just isn't within my power at the moment. I'm okay with that, because I added at the moment. Not a permanent situation. But I made excuses to my family or I just said no, I'm not going to do something. No explanation. I think it's because I don't want to appear weak and helpless in someone else's eyes. Yesterday every time I turned around it was can you do this or can you take me here. I finally said I can't drive right now. I feel dizzy I am not able to drive. Everyone just stopped. There was a period of 6 monthes that I didn't drive. Since than I've felt this freedom that I haven't wanted to give up. So when I don't feel good I say I'll go later, I'll drive you later. some days later is the next day, but I haven't said I can't drive. Handicap parking sticker( hanging thing). Resisted that for almost 2 years. I'm ready now. Didn't want the world to know I was disabled. Walking has become more painful now. Not going to stop doing it but getting a closer parking space would definitely help, I guess. Have I admitted that to others. Of course not. I let a small groan slip out here and there, but living with men you have to say I am in pain for it to mean anything. It's hard. Telling others of my struggles is not giving my independence away. I have to remember that.

It's Cold!

2009-10-19T09:04:00.001-04:00

My fingers are starting to do the turning blue thing. Raynaud's. My son asked me if it was painful. It was hard for me to answer. It is painful. But I have so much pain and it's all different, it was hard to describe. I never knew there was so many different kinds of physical pain. For now I'm sitting in front of my cozy pellet stove enjoying the flames. I started a new scarf. It's funny. It's that fuzzy kind of yarn. Well if I don't count the stiches I'm in trouble because I can't see the row before. I have an hour glass scarf. This is not going to be my new business:). I can't concentrate on doing it and counting. I get lost and then it looks like it does. I should probably bring it to my next doctor appt so when she asks how's my concentration I can show her. She'll only tell me she has that problem too. Maybe she should get checked out. Bundle up and Have an awesome day!!!

Sleep Glorious Sleep

2009-10-16T06:58:00.000-04:00

I've slept for 5 nights in a row!! NO help from any medication. I incorporated feng shui. I have to be beat over the head sometimes to try things that I already have access to. I had a book on feng shui about a year ago. I tryed some of it. Not all. Didn't believe it would work. At this time in my life I figured what do I have to lose. One of the things was to get clutter, bills, computer out of my room. Did a massive clean up with the help of my oldest. My room looks beautiful again. Second I changed the location of my bed. My bed was in the middle of two windows. I could hear everything outside or at least I tried to. Feng shui suggest moving bed from under windows so at night your not worried about intruders and listening for sounds outside. The third thing and something I tried to do but could never keep up with was to turn the TV off. I'm supposed to close it in a cabinet or not have one at all in the bedroom. For now it goes off after 1/2 hour. I have slept since I did these things. I'll keep you posted!!!!

Time well spent

2009-10-12T16:43:00.001-04:00

I'm crocheting a scarf. It's nice to see something you've made with your own hands. It's been very painful though. My shoulder, elbow, and fingers are killing me. I take a lot of breaks, but I can't wait to see the end result. Another added benefit is it forces me to sit still. I feel like I have to keep moving and I exhaust myself rather quickly. Now I have something to do while I sit. Can't seem to get around the pain. Still, it's time well spent.

Money

2009-10-10T08:22:00.001-04:00

Having lupus I am always afraid of that word. It seems I never have enough. Medications, doctor co-pays, bills, food, kids all on a reduced income. I have to be creative with my money. I have to plan. Never been a planner. Ever. I saw what I want, went after it and got it. With some things I still do that. Not when money's involved. Now I plan. I think about everything. No more impulsive buying. I plan out our meals. Which really is a good thing. I don't have to worry about what I'm going to eat or the family. If I need to prepare something early in the day because I know it's going to require energy, I know ahead of time. Thank you Wendy (Healthy Endeavors!)!! Coupon shopping. Don't sleep on the coupons. There is so many savings out there. Coupons can get overwhelming, so be careful. They can also cause you to spend on things you don't ordinarily buy, so beware. I sound like a halloween special. There are many savings is my point. My favorite is Stop and Shop. They offer gas savings (awesome!), cash off you next purchase, and they have an A+ thing for schools where they will donate money to your school based on your shopping at no extra cost to you. How great is that! For me I have trouble doing large shopping because I can't stand or walk for long periods of time, so when I need to shop big I do Peapod. A service from Stop and Shop where they deliver your groceries and bring them in the house for you. I'm in love. By the way I am not being paid by Stop and Shop for this.Hmm I wonder if there is a way? Oh well, I'm just happy to share the tip. Enjoy your Saturday!

It Can Wait

2009-10-09T06:51:00.000-04:00

It can wait. I'm not very good at that. Yesterday I forced myself to say and do it a lot. I was so tired and hurting, but I still wanted to try to do something. I made myself sit in the recliner and say "it can wait". My doctors want me to try tylenol for pain. They're kidding, right. But I try to be a good girl and accomadate them and take the tylenol. Did it help? Very little. Today I'll add the motrin to it if it gets too bad. Another suggestion from the PCP office. For now I'll slow down(even more). All of the organizing and cleaning that I finally felt well enough to tacle will have to wait. It's waited 2 years a few more days won't hurt. Cleaning is a slow process for me know. I've learned to do it in chunks. Taking a section of a room at a time. I don't have the energy to do the whole room, so break it down. The larger things that need to be done I grab, literally sometimes:), one or all of the boys. Still tired, still in pain. Time to pamper me. The rest of the world can wait. Do alittle something for yourself today. Have fun for me and enjoy!

Rise and Shine

2009-10-08T06:39:00.000-04:00

Well. I got some sleep yesterday and last night. Horay! I dreamt I was in pain all over. The headaches, the back and joint pain. So bad that I couldn't get out of bed. The only thing I was concerned about in this dream was that I had to go back to work.hmm Let's analyse.
I hardly ever talk about my pain anymore because it's always there. Some days are much worse than others but it's always there and for the most part I keep going. The past couple of days the pain has been bad. This morning I woke up in so much pain I was in tears and wanted to throw up. So I would imagine the pain I was feeling while I was asleep transfered into my dreams.
The work guilt. That is what that is. I haven't been able to work because of my condition for almost 2 years. My son asked me yesterday if I missed working. I do. I miss getting a regular pay check. I've been in denial about that one. I don't know why. Whenever I'm asked about work I always say I miss being around people. Well I'm around people now. I have new friends. I volunteer when I feel up to it. I try to do alittle something everyday so that I don't feel worthless. It works! I know I can still make a difference. I tell my story at events. But I'm not bringing in money like I use to. I'm on long term disability and I get 60% of what my annual pay was, but it's only 60%. In this economy I have not right to complain. I have made some adjustments. My husband works his ass off, full time job and a ton of one the side stuff. But I miss getting a paycheck every two weeks.
I'm in pain. I've dulled the lights on my computer so I can write. I've awaken my teenagers for school. I have to feel like a mom. Even when in pain. I don't want to be the woman in the dream that can't get out of bed because of the pain. I refuse. So I Rise and Shine until I crash. Is this it? Is this my life?
My pity party is over. The positive thinking needs to return. I am grateful I have a forum that I can write and maybe someone will read and understand and be inspired to be positive or give encouragement. If no one reads it, I've still worked things out. I feel better emotionally if not physically and I will get a better start on my day. I am grateful that I still feel pain, because I am alive. I am grateful I have learned to take a deep breath, because it relieves so much. What are you grateful for?
Rise and Shine it's going to be a beautiful day!

Sleepless in....

2009-10-07T03:54:00.000-04:00

I'm up again. I've tried turning the TV off. I sleep with it on- a bad habit. Tonight was night 1 of that. I've been up for an hour and decided to putter around for the last 1/2 hour. My pain has been worse for the last 2 or 3 days. I've been decreasing my prednisone. Sucky but needs to be done. That's not helping my sleep because my joints hurt while I'm in bed. I can't get comfortable. I've been on prednisone for all most 2 years now and we've been very slowly decreasing my dosage. The affects of prednisone is a two sided blade. One the one hand it's helped with keeping everything under control as far as progression with the lupus attacking anything else and on the other hand I've gained 60lbs and now have high blood pressure. The good are still out weighing the bad so I don't squawk too much. But it's not healthy to stay on prednisone for long. I'm coming to the conclusion that sometimes you have to stay on it long whether it's healthy or not. The pain of not being on it just isn't worth it. The pain meds have worse long term side affects than the prednisone. I'm too tired to try to edit this right now. I'll revisit it later. Let try it again. Goodnight or is it Goodmorning?:)

Teenagers

2009-10-04T07:18:00.003-04:00

You love them. You're happy they're safe. But they can drive you to drink. I have 3 of them and everyday is a challenge and guess what? I stopped drinking 13 years ago. I take a lot of deep breaths and I have learned to process things before I speak, and a wait a day or two before I act. When they were small I would have to act immediately so they didn't forget why they were being punished,but as they get older I have to wait to make sure the punishment fits the crime. And I'm not being punished along with them. You know the month long grounding where after 1 week you're thinking what the hell did I do. When do teenagers finally get it? Have a great day! I plan to!!

Nettle Tea

2009-10-02T07:31:00.000-04:00

I'm starting to get a cold. It took a few weeks to recognize it as such. Nettle tea is one of my favorite cold remedies. It does so much. In fact too much for me to write it all down. Check out the link. Great for coughs, asthma, and arthritis, just to name a few. Bundle up I think were in for a cool fall and a cold winter! Welcome to lovely New England!!

Sleep

2009-10-01T06:22:00.000-04:00

I've been awake since about 2:30am. I don't have a problem going to sleep, I have a problem staying asleep. I'm on Neurotin for my headaches and it use to knock me out at night, but as with everything my body is adjusting to it, so it doesn't work for sleeping as well as it did. I've tried camomille tea, warm milk, rubbing my temples with lavender essential oil ( not sure if that was for the headaches or sleep), and valarian. Nothing has worked. I'm not sure what I going to try next. I take so many pills ( prescription and supplements) that I'm always resistant when it comes to adding more to the list. There was a period last year when I didn't sleep at night for monthes. I actually had to write down the times that I would sleep and the duration because it had gotten so bad. Sleep deprivation is an awful thing. I was a basket case. This time it's been going on for about a month. I would wake up about 4am which isn't too bad, but after a week of this I would be so exhausted that I would end up in the bed with wicked headaches for 2 days. Of course there was more to the headaches than just sleep deprivation. I would try to carry out a normal person's routine during the day. Always falling short and exhausted my already tired self. At times I like to forget I have Lupus and try to be the old me. I realize she doesn't exist in that energetic, always on the go way, but I still remember and I like to pretend. I pay when I do. Sometimes it's worth it, but I have to pick the times I want to use up energy that my body can't handle. I'm getting off track again. Any suggestions on sleep would be welcomed. It's 6:19 and my kids should be up, but of course they are sleeping soundly:). I'll take it easy today.

Where ever you want to go

2009-09-30T05:48:00.000-04:00

I too am a firm believer in the mind taking you where ever you want to go. May sound creepy, but let's explore. 98% of the time I have imagined a goal, really planned in out and here is the key (this is all learned stuff) you have to feel it, I have achieved it. The other 2% I stopped visualizing. Example- I wanted a new car. I picked out my new car. I went a the dealership - didn't have the money for it and at the time I didn' believe I was ready- and test drove the car I wanted so in my mind I could visualize me in my car. I could feel the excitement of me driving my new car. I could smell my new car. Then I went home and put a picture of my new car on my computer as a favorite. Every morning I looked at my new car and visualized me driving and how it felt. I would be driving to work, driving to familiar places and feeling myself getting in the car, feel putting my hands on the steering wheel. Feel every moment. Then I would go off with my day. About 4 months later I get a call from the dealership saying that they had the car I wanted in. ( Jeep was only releasing a certain number and color of these cars to dealerships). Well I thought how was I going to get a loan for this car. I called my credit union. They happened to have a fabulous special going on with 100% financing. I thought I'm never going to be approved, But I had been visualizing me in this car for 4 months. I submitted the application in the morning. When I came back from lunch I had a phone call. I called back and I was approved! I was driving the next day. The funny thing is it wasn't the color I wanted but the color I test drove and had as a favorite on the computer because I had forgot the change to the color that I was visualizing everday! My point is be very careful what you visualize on a daily basis. Make it positive, make it beautiful, and be very specific! I have many more examples but I'll save that for another time. By the way I still love my new car (3 years old now), color and all! Have fun visualizing!!

Feeling Lazy

2009-09-29T21:01:00.000-04:00

For me it's late and I'm tired, but I learned something new and had to try it out. Isn't she beautiful. MGM in Las Vegas. I feel like this right now. Just relaxing. Didn't over do it today. No trying to get 5 things done and exhausting myself. Resting up for tomorrow. Goodnight.

Positive thinking

2009-09-29T15:16:00.000-04:00

My faith has been restored. The minute you take yourself out of a situation and think positive, good things happen. I got a response from the person I reached out to. I'm not sure about the delay, but I am sure that it had nothing to do with me. I can't let life get me down. We all have our moments. THINK POSITIVE. Words to live by.

Gratitude

2009-09-29T07:45:00.000-04:00

This morning before I got out of bed I made myself think of three things I was grateful for. It's not as easy as it sounds on some days. I like to think of new things and not keep repeating the same ones because then it becomes routine and I'm not putting any thought into it and really appreciating these things. To be honest as I write I can't even remember what the three things were. I guess it doesn't matter because I remember the feeling I got from it. I got out of bed with a smile and I was able to transfer my happiness to my children as they got off to school. Having lupus most mornings- every morning- I need a reason to get out of bed and a focus on something other than the pain. When people see me I always have a smile - ok not always most of the time:) . One gentleman that I met at my favorite dentist's office, said that he couldn't believe that I had lupus because I was smiling and didn't appear to be in pain. Oh yeah gratitude - I was getting off track- I smile because I am grateful. I'm still here, I still breathe, I still can walk, I still can hold my children and my husband, I still can look outside and see all the beautiful colors, I still can smell all the delicious aromas of fall. It's the simple things that make me happy. Things we all can be grateful for. Enjoy your day!

Check Yourself

2009-09-29T07:31:00.000-04:00

I resently reached out to someone I didn't know for a position on a voluntary board. I haven't heard anything. My immediate thought was to be angry and want nothing to do with the organization. That lasted 2 minutes. Then I began to doubt whether he thought I was good enough. I know I'm good enough ( an improvement from the past). A lot of other thoughts came to mind. You know the race issue presented itself. I don't use the race card because I always stand on my own merrit, but if you don't take the time to get to know me - I'm not naive enough to think that racism isn't present in this world. Hell, I don't even know if he knows I'm black. But I will ignore all of these thoughts and check myself. I volunteer from the heart. It's not about recognition. It's about the feeling of well being that I get from helping others. I also have to remember that it's not always about me. There could be other things going on in peoples lives. If it is about me, I can't control what others think. I can only control my reaction to it. I am not defined by what people think of me. So I continue to help my cause. Letting people know about Lupus. Being a face and a voice. Knowledge is power right?! The more people who know and connect themselve to this disease the more help we will get.

Diaries of Mad Love

2009-09-27T19:21:00.000-04:00

I just read a great book, Diaries of Mad Love by Sole Patterson. It was filled with drama, deceit, steamy love scenes, and a powerful message about being true to yourself. I love it. It's not in stores yet but can be purchased online at http://www.publishamerica.net/ . Definitely one for the library!!

Thoughts

2009-09-27T08:01:00.000-04:00

I love " I promise myself". I have a copy of it on the mirror in my bedroom so that I look at it every morning and read it in its entirety on most. I gives me such a feeling of well being. I can't believe he wrote it around 1917. Don't quote me on the year. Good words to live by never go out of style. They apply to all generations. As much as we as a society like to think we have changed and evolved, we really haven't. We keep making the same mistakes and not learning from them. Fighting for superiority instead as living as one. I try to be happy with what I have and who I am. I'm not in competition with anyone. I can appreciate everyones differentness or uniqueness. When I started changing my mindset I noticed a lot of things. The most noticable was the absence of the friends that I once had. Some relationships are very stressful on both ends. When I concentrated on being positive. Truly positve! All of the once stressful relationships melted away. It's lonely at first, because I am use to the drama. Now it's peaceful. New people came into my life. I still see the old friends from time to time, but it's definitely different. Again it's not about being superior it's about being different and appreciating the difference without feeling I have to respond to it.

I Promise Myself

2009-09-27T07:32:00.000-04:00

I promise myself

To be so strong that nothing can disturb my peace of mind.

To talk health, happiness, and prosperity to every person I meet.

To make all my friends feel that there is something worthwhile in them.

To look on the sunny side of everything and make my optimism come true.

To think only of the best, to work only for the best, and to expect only the best.

To be just as enthusiastic about the success of others as I am about my own.

To forget the mistakes of the past and press on to the greater achievements of the future.

To wear a cheerful expression at all times and give a smile to every living creature I meet.

To give so much time to improving myself that I have no time to criticize others.

To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.

To think well of myself and to proclaim this fact to the world, not in loud words, but in great deeds.

To live in the faith that the whole world is on my side, so long as I am true to the best that is in me.

CHRISTIAN D. LARSON

Fatigue

2009-09-26T08:17:00.000-04:00

I'm in a talkative mood this morning so bare with me. My spelling is shot also :) . I was confused with fatigue and energy. I have now come to realise that it's not the same thing. I've been eating healthy for a while now. It's creating all this energy and it's fabulous. But!! My body can't handle it. I'm not so sure that it's because I'm out of shape and I am OUT OF SHAPE. I bike ride, I walk, I do yoga - not in the same day and most times not even in the same week- you got me- sometimes not in the same month. But when I do those things I feel tired. The out of shape tired that one would feel when they're not use to the activity. This is different. When I take advantage of my new found energy. I get massive headaches and I'm in bed with fatigue - the debilitating depletion of energy - for a day or two. So how do you enjoy all of this energy that I am not accustomed to and not do myself harm. I guess that's why I am channelling my energy into my writing. I am going to leave now, my son is actually interested in doing educational things on a Saturday, Hurray!!!!

Reflection

2009-09-26T07:17:00.004-04:00

Every bored chick wants to be a writer or photographer. I do both. I guess that makes me truly bored or very inciteful. I'm writing a book. I've always been told that my life is colorful and you should write a book. Even in highschool. Who has the time or patience. Right now I have nothing but time and more patience than I've had in years if not ever. I like taking pictures because I want the world to see the beauty around them the way I see it. For that reason I don't like to do portraits. I don't believe you see the real person in a portrait, only what they want you to see. You'll see my photographs in my blog so enjoy.