Chronic Chick Talk

Finding ways to de-stress my life has become important to me. I become overwhelmed pretty easy since living with lupus. The evening times are my anxiety prone times. In those few hours my daughter comes home, dogs are more active, homework helping, and fixing dinner and eating dinner.

I had to reduce my stress level, so we started planning meals ahead of time. A lot of our recipes come from All Recipes. The site has a lot of simple recipes and an added plus is they are economical. Finding simple recipes is important while dealing with chronic illness. We plan our meals according to what is going on that day. If I have a doctor’s appointment it’s usually crock pot or eating out. On the days, my daughter has tae kwon do we either prepare meals ahead of time, or you guessed-crock pot. We put our menus on the refrigerator to remind us to pull out the meat.

Another thing, that’s helped me, is to only shop for 2 weeks of groceries. It takes less time to shop and takes less time to put things away. The putting away is my least favorite part of grocery shopping. I’m usually exhausted by the time we finish one shopping trip. I’ve had to teach myself not to over due things. It’s easier said then done.

The last thing, we do is avoid the rush hour shopping times. The busiest time here is early evening on weekdays and Saturday nights. During the day on Saturday’s is sudden death because everyone and there grandmother is out. In the evening on a Saturday night are the slowest times in my area.

All of the de-stressors have made my life easier. They have been a real life saver when dealing with a lupus and a teenager with ADHD.

I was tagged by Mel

The 10 reasons why I blog:

1. To increase awareness of lupus, and living with chronic illness.
2. To help others understand lupus from my point of view
3. To find some positive out of living with lupus
4. To speak my mind
5. To share tips and stuff with others
6. For networking and meeting great people
7. To continue to learn- it’s my own addiction, but a positive one.
8. I love to write and it brings out the best in me.
9. To inspire others
10. Just because I feel like it (lol) pheww.. The list is done- Yeah

I’m tagging- lupus family (jeff)

Life in autoimmue lane

Living with Fibromyalgia

A stellar Life

I came upon some interesting news reports and blogs about the effect of the energy saving bulbs and several medical conditions. People with lupus are reporting going into flares from the bulbs. I was shocked to find this out after spending the winter in my chair next to one of these bulbs. I quickly removed this bulb to see if it would help. I was thinking anything that would help, I’m willing to try. I’ve spent most of this past winter in one flare after another with the lupus.

Then I started to dig even deeper about the affects of these bulbs. They are shown to cause migraines, epilepsy seizures, dizziness, lupus and other autoimmune flares, and other medical conditions. I could go on about the affects of these bulbs.

Some people with lupus are photosensitive and have reactions to the sunlight so it only makes sense that we would be affected by these bulbs. Time will tell if I start having fewer flares together or the pain decreases because of these bulbs. Not everyone is affected the same way by these bulbs. But when you live with chronic pain you’d stand on your head if would decrease your level of pain.

Sources :

BBC News

Spectrum Alliance 

Corislupusupdates 

A Few Shots From A Chronic Chick 

This is a picture of my sunflower potted garden. I created the garden last spring/summer. The sunflowers were planted in pots so that I could have a garden. Being creative while living with lupus can be tough-But a girls gotta do what a girls gotta do. This year will prove to be another struggle to have a garden, but time will show my creative side. Living Life with lupus the best way I know how.

They give lots of great  puppy dog  kisses. The black and white dog is a shih tzu named Darcy and The white dog is named Mason, whose a Maltese poodle. They have an extraspecial place in my heart. They both love me unconditional and can’t ask for two better doggies. More pictures to come.

 Mason is enjoying a snooze in his favorite bean bag chair, which he stole from my daughter.

 Darcy sleeping next to Mason in her beloved royal blue coat.

Today had been pretty good for me. Yesterday, my daughter had tae kwon do. She’s a yellow belt. She will test out to be an orange belt soon. Her instructor says she’s going to be a force to reckon with soon. She’s been working really hard to test out for her orange belt. I can’t wait to see her test out for her next belt. The instructor wants her to teach a class of pewees when she get older. That is such a high honor to do. I am more then proud of her. She’s going to spar (fight) in the next tournament. She didn’t spar at the last one. She wanted to just watch to know what to expect. She doesn’t like surprises in stuff like that. The tae kwon do has help with her ADHD. She’s able to focus better.

I was able to fix my dog’s shirt today by putting some Velcro on it. It’s nice to feel better today. Each day is a gift from God and I’m happy for that. I don’t know what tomorrow will bring, but I’ll take what I can get. I watched the show Deadliest Catch on TLC. Those guys and an occasional gal are awesome. I can’t imagine being out in the middle of no where without any land in sight.

 I had the pleasure of interviewing Wick Davis of the Lupus Foundation of America.

What motivates you to continue to drive to the Lupus Foundation of America through all that Washington DC traffic?

Wick Davis Says:  First let me just say that people outside of the DC area have absolutely NO IDEA how awful the traffic is here. It is like nothing I have ever seen, and I’ve lived all over the country. It’s even awful on the weekends. I always chuckle when friends of mine from out of state complain about the traffic where they live. They have no idea. None! That said, my commute into DC isn’t too bad. I either take the bus, which is great, because I can sit and read, or relax, for an hour or so. I’m not sitting in traffic, wishing I was somewhere else. Or, if I don’t take the bus, I catch a ride with a coworker and her husband. Either way, I’m saving on gas, wear ‘n tear on my car … and most importantly, I’m saving my sanity!

What is your job at the Lupus Foundation of America?

Wick Davis Says:  My title is Director, Online Content & Community. So what does that mean? Well, it means a lot of things. I am responsible for all things pertaining to the lupus.org Website. Everything from creating new content when needed, to updating existing content, to maintaining the navigation on the Website; to ensuring the Website’s links are working, to making sure everything is spelled and punctuated correctly. Basically, my role is to make sure that users of our Website have a positive experience. I am also responsible for the Lupus Now magazine Website  and the World Lupus Day Website .

I host the monthly LFA Web chats. I am responsible for some writing content for, and the distribution of, our enewsletters. I write the LFA blog, “On the Road to a Cure,” . I am responsible for the LFA presence in Face book, and to a lesser extent, MySpace. I make sure that LFA PSAs (public service announcements) get posted to YouTube. I monitor the new LFA message boards. And since I have overall knowledge of all of these things, I try to make sure they’re all connected, and that people are aware of these great resources. For example, if we post a new PSA to You Tube, I write about it in the blog, and post it to both Face book and MySpace. Lots of cross promotion! I have to say … the one thing I really enjoy about my job at the LFA (and that I enjoyed while I was at the ADA) is the fact that I get to help people every day. Whether it’s providing timely and accurate information via the Website, or monitoring the LFA message boards, or hosting a Webchat, or writing the LFA blog … I enjoy all of that. I find it personally rewarding.

Does working at the Lupus Foundation of America have a personal connection to you?
Wick Davis Says:  Actually, it does not. Prior to my joining the LFA, I worked at the American Diabetes Association for almost 6 ½ years. A good friend of mine knew I was looking to make a career change and he had seen a position advertised on the lupus Website. He passed along the job posting to me and the rest, as they say, is history. However, after joining the LFA, I came to find out that a good friend of mine in Amsterdam has lupus. So she was excited that I was working for the LFA.

This is the first of many recipes specially made for those with chronic illness, and those that have no patience with cooking. I consider myself in both categories. Cooking isn’t my cup of tea, even though I’ve been told I can cook.

1 dozen eggs
10 dill pickles or tablespoon pickle relish
1 tablespoon mayonnaise
1 teaspoon sugar (omit if using pickle relish)
Dash of worchester
1/2 tsp salt
1/4 tsp pepper
Paprika
1 teaspoon mustard of choice

Boil the eggs with plenty of salt for easy peeling.
Slice each egg in half and remove yolk. Break up egg yolks in medium size bowl. Chop up pickles/pickle relish in a food processor or finely chop them. Add mayonnaise, mustard, worchester, salt, pepper, and chopped pickles. You can add extra mayonnaise to taste. Mix up well. Spoon the egg mixture into each egg half. Then garnish with paprika

Yesterday, I went to my 4 month check to the rheumatologist. It’s always a long ride there and back. We left in the morning and didn’t get home until 5 pm. It made for a really long day. I’ve had this upper respiratory stuff and he had to give me an antibiotic. He checked me for pneumonia and it came back clear. That was a major relief. I still have other tests out, but this is a major relief.

I have to go a rheumatologist so far away because I’ve dealt with a lot of my symptoms are in my head. Many doctors don’t want to diagnosis you with lupus. I totally understand that, but refusing to treat symptoms is unrealistic. I suffered in pain with little relief for 4 years because of ignoring my symptoms. I can say I’m thankful for the doctors I have today. All of them listen to me and react when they need to. I feel more like a patient, then a number in their checkbook.

Good doctors and nurses are hard to find. If you have good doctors hang on to them because they are hard to find.

I was blog hopping to my friend Michelle and learned of the death of a 16 year old girl with lupus dies. DCF took her away because she wanted to try different medications for treatment. It horrifies me that DCF would take away a child from her home while she fights for her life. Chelsey Cruz wanted to try something that may not give her the horrible side effects of medications taken by lupus patients.

In my opinion this girl was more of an adult then any one else. It maddens me that a child so sick could be yanked out her home because of disagreement of medications. I know myself that I don’t always agree with the treatment doctors prescribe. I have had to reduce medications or refuse to take medications because of side effects. This girl is more of an adult then many adults now a day. When someone has dealt with a chronic illness such as lupus they should be able to make medication choices. I’m sorry but if it’s my body I will chose what I take in.

I pray for the family and friends of Chelsey Cruz. I pray that the family will find some healing after the death.

Links to Story

Mother’s Rage Lives On

Girl in Medical Dispute Dies

Cruz Letter 

Walk A Mile In My Foot Steps Then Tell Me How it Feels……. ( my thoughts).

The lupus had me totally wore out. I am so lacking in energy, wheeling across the floor makes me feel like crap. I hate what this illness has done to my body. I want to do so many things. Well lupus has a mind of its own. Just using the computer wears me out. It zaps what energy I do have out of me. I have tried to eat just about anything to boost my energy level. I’ve tried chocolate, caffeine, protein and carbs. It does not help at all. I will be glad when this flare passes. I am grateful to be able to type this tonight, but man this is so tiresome. I feel more like I’ve walked a marathon then wheeled across the room just to type this up. I pray God will release the devil in me and many others called lupus. It sure does suck. I feel like every breath has been taken away from me. I don’t know why this illness does this to me. I want a few good days. I am really hating winter and the transition to spring. God give me strength.