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[smith0507]

“I don’t remember....”

Do you often find yourself trying to recall a conversation that you’ve previously had or the details of an important meeting? Maybe you had an important appointment to attend; forgot to pay your utility bill; or failed to give your daughter lunch money, though it was sitting on the counter in front of you. Unfortunately, I’ve experienced all of these situations. It is quite frustrating because it is evident that my memory is not as great as it once was. How could this be? I’m only 35. I find myself writing multiple “To Do” lists to remind me of the things that need to be done. I have one at home, in my phone, the car, and at work. The lists contain the same information and I add information as needed. Sounds tedious, right? I even go as far as asking my daughter to remind me of things every once in a while. At times, this can be a tall order for a 9 year old.

What I just described is called “lupus fog”. Lupus fog is a cognitive impairment that is caused by lupus. Symptoms may come and go or be continuous, making school or work difficult or even impossible in extreme cases. People with both lupus and fibromyalgia are even more likely to experience cognitive problems. If you experience signs of confusion and memory loss, you may benefit from the skills of a cognitive therapist (please consult with your rheumatologist). These professionals can help you develop coping techniques to improve concentration and overcome these difficulties. Techniques may include puzzles, games, biofeedback, using a daily appointment calendar, balancing activities to avoid stress, etc. Others tips may include:

~Pay attention when receiving new information.

~Repeat it or write it down. Verify any details.

~Focus on one task at a time.

~Take good care of your body; exercise, eat well and get enough sleep.

~Learn memory techniques, such as associating a person’s name with an image or repeating the name several times in conversation.

~Try to stay organized. Consider using a calendar notebook to keep appointments, plans, contact information and reminders in one place.

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[smith0507]

What’s Your Source of Energy?

No matter how many hours I sleep per night, when my alarm goes off in the morning I still feel restless. What’s a girl to do? I take vitamins. I even give myself prescribed B12 injections biweekly. Regardless of the remedy, my level of energy is only changed temporarily. There is only a week of relief. I recently started drinking coffee regularly, however, when the coffee wears off I crash. Then, the vicious cycle continues. What’s the key to boosting my energy level? EXERCISE!!!! I know what you’re thinking. If I’m already fatigued & have no energy, how will I gain energy to go exercise. Listen, I get it. I have the same thoughts on most days. The exercise doesn’t have to be strenuous. Try bike riding, yoga, Zumba, or even walk around the neighborhood. Take one day at a time. Eventually, your level of energy will increase drastically.

[smith0507]

Types of Lupus

It is difficult to diagnose Lupus because it’s symptoms are very similar to many other diseases. However, once a person has been diagnosed, what’s next? The next step is determining which type of Lupus that you have. There are four types to choose from. Which type of Lupus do your symptoms most identify with? I have Lupus SLE. What about you?

https://resources.lupus.org/entry/types-of-lupus

[smith0507]

The New Me!

It has taken me years to realize that I am not my old self. I am unable to do the things that I could do prior to having Lupus. For example, before I could clean my whole entire house in one day. Nowadays, I have to clean in sections. I typically clean the common areas first (kitchen, living room, restrooms). Then, I gradually conquer the remainder of the house. Laundry is an animal in itself. I wash the laundry and place them in the dryer. However, when it comes to folding everything, it generally takes me a week, if it’s during the week due to work and extracurricular activities. Or it will take an entire Saturday if I do not leave the house. That’s too much! I didn’t have this struggle prior to being diagnosed with Lupus. I could knock it out quickly. Now, I have to take breaks. Luckily, my daughter helps out because she loves to load the laundry, sweep, and mop.

The same is true when I want to hang out with my friends. After working all week, I could use a break. I prepare all week for the Saturday night party. I chose my outfit, set up a babysitter, only to take a nap that lasts way longer than expected or to have achy joints by the time I’m scheduled to leave the house. It is embarrassing to say that I can’t make it because I don’t feel well. It gets old and sometimes people just don’t understand what I go through on a regular basis. Instead, I lie. That sounds horrible saying it out loud but it’s true. I don’t want to let hem down so I just tell them something came up or that I couldn’t find a sitter. When in actuality I am tired, drained, or my body is aching. Who wants to hear that all the time? I wouldn’t. Sometimes I will push the limit and go to an event because I’ve cancelled on people so many times. That is a huge risk to take because I will definitely pay for it later, which leaves in my bed in great pain for 1-3 days. Decision making is definitely far more complex these days.

Hopefully, this blog will help my friends and family, along with yours become aware how difficult it is to accomplish small tasks and be more understanding when we change our plans. We are not canceling on purpose or trying to avoid you but at times we need to learn how to listen to our bodies. I’m still learning to listen to my body as well.

[smith0507]

A Needle in A Haystack

After 16 years of having Lupus, I still do not know every little thing that causes me to have a Lupus flare. I am aware that stress, foods that contain garlic, lack of sleep, and at times, the weather can cause me to have a Lupus flare. Unfortunately, at times the triggers that cause Lupus flares can be extremely hard to identify. The key is to pay attention to your surroundings, your daily intake of food and beverages, and how your body reacts to the foods, drinks, and environments that you frequently encounter. How can I keep up with all of this? Journaling! Take notes of your reactions to certain foods and/or situations can help you identify and avoid foods, places, activities, that are causing your health to temporarily deteriorate. Though you may not be able to avoid all of your triggers, minimizing them can improve your overall health as well. After all, building awareness is just half the battle.

[smith0507]

How Did You Sleep?

Are you having difficulty sleeping at night? Are you uncomfortable? Do you constantly toss & turn? If you are sleeping well through the night, do you still feeling restless in the morning? Unfortunately, Lupus has an affect on the amount of sleep you receive each night. Click the link to learn more about it.

https://resources.lupus.org/entry/sleep-is-essential

[smith0507]

My Story

In March 2002, I was in the second semester of my first year in college. My roommate and I were spending another late night in the cafe studying for an upcoming exam. One minute we were laughing. The next minute I was in excruciating pain. So much pain that four male neighbors from our dorm had to carry me back to our dorm. When we reached the lobby my roommate called my dad. It was well after 1a. Though we lived 30 minutes away, that night my dad’s car was more like a jet. I went home that night and never returned to that college campus.

It took 6 weeks and an abundance of doctor visits to get to the root of the issue. I was tired of being told that I had the flu and then being sent home. During this time, it hurt to walk, eat, or even drink. The only thing that would ease my pain was sleeping but even in my sleep, I could feel my aching joints. It took a month for a doctor to refer me to a Rheumatologist. During this time, my weight drastically decreased. I weighed 165 lbs in March 2012 and I wore a size 14/16. By the time I was officially diagnosed with Lupus, I was 100 lbs and wore a size 4. I’ve NEVER been a size 4 in my life! My Rheumatologist stated that my white blood count was so low that had I waited another day, I probably wouldn’t be alive. That occurred on Friday, April 19, 2002.

Having Lupus is an ongoing roller coaster and I strongly believe that my purpose is to share my journey in hopes to build a positive place where those with Lupus, their family, and friends can share their experiences. I also want to inspire and uplift my fellow Lupus warriors. Lupus does not define us. Most of all, I want to educate the world about this auto-immune disease that has claimed the lives of so many people. Stay tuned... 

[smith0507]

Food For Thought...

What’s in your food? Have you considered that your diet could play a major role in how you feel? Do you find that you are making better choices and still having difficulty managing your Lupus? There could be one ingredient in your meal that is causing you to have a Lupus flare. There are six foods that Lupus patients are recommended to avoid.

[smith0507]

What is Lupus?

What exactly is Lupus? Lupus is an auto-immune disease that affects the immune system. The immune system is designed to fight illness, infection, and disease to protect the body and maintain good health. When the immune system is compromised with a condition such as lupus, it works differently; rather than protecting the body from unwanted problems, the immune system begins to attack bodily organs and tissues. It is a dangerous and often debilitating problem that many live with each day. Lupus is treatable, however, there is no cure. Medications such as steroids are typically prescribed to help manage Lupus.