Saturday, October 31, 2009

The Me Nobody Sees

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!!!!!

Tuesday, October 27, 2009


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.

Sunday, October 25, 2009

A New Day

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!

Friday, October 23, 2009


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:).

Wednesday, October 21, 2009

You Can't Be a Quiter

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!

Tuesday, October 20, 2009

admitting to others

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.

Monday, October 19, 2009

It's Cold!

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!!!

Friday, October 16, 2009

Sleep Glorious Sleep

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!!!!

Monday, October 12, 2009

Time well spent

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.

Saturday, October 10, 2009


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!

Friday, October 9, 2009

It Can Wait

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!

Thursday, October 8, 2009

Rise and Shine

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!

Wednesday, October 7, 2009

Sleepless in....

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?:)

Sunday, October 4, 2009


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!!

Friday, October 2, 2009

Nettle Tea

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!!

Thursday, October 1, 2009


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.