Thursday, April 28, 2011

Burning Through The Pain


I lie awake with throbbing pain

Some times I wonder if I’ve gone insane.




The pain courses through my limbs like fire
………Of this.................. I truly tire




I refuse to let the tears flow tragically
While my body burns in agony




Voices remind me to hold tight
Voices say “keep up the fight”




The tears I hold back begin to burn
Slowly now its my turn




Drowning, burning in my pain
Self pity has come to claim




Swallow the knot that’s formed so tight
I gotta keep up this burning fight




I see the light of another dawn

All i have to do is hold on




I will not take this all in vain
I will beat this burning pain


Friday, April 22, 2011

"Oh sugar sugar ...."


When you have lupus it is very important to watch what you eat. So many things we love to eat can cause a flare up for us Lupies! I did not believe this until I started a food journal. I wrote everything I ate in a day, and documented how I felt at night. I did this for one month with out changing my diet.


The next month, I started weaning myself off of refined sugars, and caffeine. I noticed a huge difference just by cutting sugars out. It was hard. I use to smoke, and I gave that habit up 3 and a half years ago. Sugar and caffeine (I believe) are harder to give up than nicotine. Sugars aren’t thought as of dangerous. We don’t see people in the hospital hooked to ventilators do to everyday consumption of sugar.


I had to train my mind to view Sugar as straight acid. I started weaning myself off sugar very gradually. Instead of a cup of sugar in a pitcher of tea, I knocked it down to a ¼ cup. Now after several weeks I don’t add any tea to my favorite beverage at all. When I want a sweet drink I drizzle a teaspoon of honey on my ice. It was a big adjustment for me.


I still occasionally have a soda. Sometimes nothing beats a hot dog and a Pepsi.


My next goal is to wean myself off of whole grains. We eat a lot of whole grain pasta, and bread. I found out at my last appointment that my bodies needs complex grains such as pumpernickel bread. I don’t believe we should cut whole grains out of our diets, but I do believe that I should cut back on my intake. Our bodies break down whole grains, and they turn to sugar in our body, the more complex the grains are, the harder it is for our bodies to break down, so it doesn’t turn into pure sugar. So I can enjoy the things I want to eat more.


If you would like to learn more about foods and lupus I suggest this site




This is what that site had to say about food that causes lupus flare ups.



  • alfalfa sprouts (have been scientifically proven to actually induce a flare up)


  • Research has shown a diet low in bad fats (trans- and saturated fats) and low in calories in general leads to a reduction in lupus symptoms and flare-ups. Patients experienced extended periods of remission


  • Consume a diet that emphasizes natural, whole foods such as legumes, soy products, fresh fruit and vegetables, fish, healthy fats and oils to increase Omega-6 intake and nuts and seeds. Eat plenty of cold-water fish (halibut, herring, salmon, mackerel; canned sardines in olive oil are especially beneficial as they are high in Omega-3 EFA), which can keep inflammation down.

  • Many lupus patients find that a great natural cure to reduce lupus flare ups is to exclude refined foods from the diet, most notably white sugar, salt, white flour, white pasta, and dairy.

  • It is also believed that eating a diet that reduces acidity in the body is an effective home remedy to lupus flare ups.

  • To reduce acid in the body, include plenty of fruits, lean protein, ginger, garlic and vegetables.





Monday, April 11, 2011

*slaps forehead* DUH!


Dear gentle readers,

I’m so sorry about my belly aching last week! Taking a nap this weekend made me realize WHY I’VE BEEN SO DOG TIRED!!!


My husband has been building a garage over the weekends. Normally I use weekends to catch up on rest. The past three weeks I haven’t gotten to do this. Sunday, I got to take a three hour nap before bed time, and today I felt great! Its amazing what a little sleep can do for the body and mind.


When your body is so worn out it takes a toll on your mental ability to stay positive. I know it puts me in a funk, and I begin to get very depressed.


This weekend was also a mile stone for me.


I dread storms, springs are very hard on me due to rapid atmospheric pressure changes. We had some pretty crazy weather this weekend. I noticed I was able to sleep.


Normally a few days before the storms begin my joints burn. No amount of heat, or stretching does any good. My whole body throbs. This time!


It was a slight burn, pain that I can tolerate. I didn’t even notice until after the storms left that I wasn’t in agony!


How awesome is that!!!!!!!!!!!!!!

Now this evening I’m feeling some throbbing because the temperature has dropped significantly and I got a little chill. I”LL TAKE IT!

Friday, April 8, 2011

Every day Choices

Remember that energy I was so excited about last week? Its depleted. One of the medications I take makes me very tired. Today I had to make a choice to either feel good , but be so exhausted I wouldn’t be able to do anything


…. Or……


Skip a dose today and get some house work done, and deal with pain later. That kind of put me in a why me mood. Why do I have to make these decisions.


Its not fair something so easy to do, has to be so complex. Then I have to remember there is always some one worse off then me. I guess my poor attitude started yesterday. My grandmother called and said its warm and sunny and I needed to take my children outside to play. I got frustrated because I had to make the choice of getting caught up on house work or taking them outside to play. You may be sitting there wondering why I don’t just do both.


OH THE JOY TO BE ABLE TO!

I can only do a few tasks at a time. Taking the children outside would involve me getting them ready…getting myself ready…chasing them, picking them up, and stadig for long periods. I would love to be able to do this with my children. But the sheer pain of picking them up repeatedly, or chasing them, utterly `exhausts me. Not to mention the pain I have to endure through the night just sucks.

I’d rather use my energy to keep my house caught up. This thought just depressed me. It makes me mad that I have to choose. I just want to do both. Be a good mom with a clean house. I get into a self loathing state when my grandmother gets on me about taking the kids outside yadda yadda …. I’d love to. I get so mad at my body for failing me. I have a 90 year old body with a 24 year old mind.

*Sigh*

Suck it up nacy and put your big girl panties on and deal with it.

Tuesday, April 5, 2011

A Lupie HAHA moment

Tonight the husband and I took the kiddos out to supper at one of our favorite chain restaurants. After taking our seats, I instantly grabbed a roll to butter up for my daughter. The knife I was usig slipped and sliced my finger.

I didn’t feel it but saw my ring finger was dripping with blood. The blood was rushing down my finger so I excused my self and went to the bath room. I held my finger in my hand while I rushed to the bathroom.

Entering the bathroom I realized I had blood running all the way down my arm! I instantly started to panic a little thinking I must have really cut my finger. My Hand was full of blood, and I left a trail of blood to the sink. I put my finger under the water and watched the blood flow very quickly from my hand and pool at the base of the sink. I didn’t want to look. I just knew the top of my finger must be missing! I let the cold water run over my ring finger for a while and then looked down. I couldn’t even SEE THE CUT!!! I quickly washed my hands and wrapped my ring finger up with a few layers of paper towels.

On my way back to the table I couldn’t understand how a paper cut could make me bleed so much! Then I remembered!!! My medication probably has a lot of aspirin in it. Luckily it stopped. And I had to laugh at myself for the sudden panic I felt.

So from now on I’m carrying some medical gauze and Band-Aids!!!

Monday, April 4, 2011

Negatives = Positives

Well I’ve stopped throwing up! I believe I’ve officially adjusted to the medications. I’ve noticed a few things.


1. I hate food. It taste like cardboard. I would rather throw up then make myself eat breakfast or lunch. I feel bloated. Food feels like it swells in my mouth and stomach so I have to force myself to eat. So I’m going to try to drink those protein shakes, instead of making my self miserable with food. At least the protein shake will coat my stomach.


2. I’m in a fog. Sometimes my eyes don’t adjust and I’m spacey. I’m having a hard time remembering things, so I repeat myself a lot.


3. Mornings my eyes feel like I have a film across them, and I’ve noticed my eye sight is blurry in the am. But I think its my glasses. My guess is my eyes are pretty dry. POSITIVE THINGS! Before the meds, every breath I took was agony. When I inhaled or exhaled it felt like some one was stabbing me with a knife in the center of my chest. Sometimes having pressure on my chest hurt. Even Justin or Elainna as tiny baby’s hurt my chest….


*Inhales deeply*


*slowly exhales*


The pain is tolerable! I only have a sharp pain when I’m walking. I can deal with that!! I forgot what it was like to not think about breathing! I’m still enduring joint pain, but every day I get a little stronger. A little stronger to do a little more. I can accomplish small tasks with out being wiped out. So I’m content with how my meds are working.

I’ve got this