The Spoon Theory

The Spoon Theory by Christine Miserandino 

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this every day?” I explained that some days were worse than others; some days I have more spoons than most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

It’s hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

Share this:

• Press This
• Twitter
• Facebook33
• Google

Need an energy boost? Go for a walk!

Originally posted on ConnieSelleccaBlog:

you find yourself nodding off each day after lunch…Forget trying to get an energy boost from Starbucks or RedBull. Take a walk, instead!

Researchers at the University of Birmingham discovered that people who took a short, leisurely walk during their lunch hour got a significant mood boost, had longer attention spans, and were better able to fend off work-related stress than those who consumed caffeine – and the change lasted for several hours. That’s because walking increases oxygen flow to the brain, and boosts the production of energizing, feel-good brain chemicals.

Preventing a Lupus Flare

Preventing a Lupus Flare. Thank you to  everydayhealth.com By Chris Iliades, MD | Medically reviewed by Farrokh Sohrabi, MD for this information.

Flares are an unfortunate part of living with lupus, but lifestyle changes can reduce your risk of flares. Eating a healthy diet, exercising regularly, avoiding stress, and staying out of the sun will help.

  One of the hardest things about living with systemic lupus is coping with unpredictability; if you have lupus, you will go through periods when your disease seems to be quiet and periods when it’s active and your symptoms worsen. These periods of feeling worse are known as lupus flares. Although there is no way you or your doctor can completely predict or prevent a lupus flare, you can identify and try to avoid known triggers to reduce your risk for flares. Making appropriate lifestyle changes can also help reduce your risk for a lupus flare.

Some of the common triggers in systemic lupus are sunlight, infections, and stress,” says Amita Bishnoi, MD, a rheumatologist at Henry Ford Hospital in Detroit. Other common triggers include being overtired, starting or stopping medications, becoming pregnant, or undergoing any physical stress, such as surgery or an injury.

Lupus Flares and Lifestyle Changes
The best thing you can do is live a healthy lifestyle,” says Ellen Ginzler, MD, a professor of medicine and chief of rheumatology at State University of New York Downstate Medical Center, in New York City. “Stay active, eat a healthy diet, stay out of the sun, and  don’t smoke.”

Other things you can do include:

One of the hardest things about living with systemic lupus is coping with unpredictability; if you have lupus, you will go through periods when your disease seems to be quiet and periods when it’s active and your symptoms worsen. These periods of feeling worse are known as lupus flares. Although there is no way you or your doctor can completely predict or prevent a lupus flare, you can identify and try to avoid known triggers to reduce your risk for flares. Making appropriate lifestyle changes can also help reduce your risk for a lupus flare.

“Some of the common triggers in systemic lupus are sunlight, infections, and stress,” says Amita Bishnoi, MD, a rheumatologist at Henry Ford Hospital in Detroit. Other common triggers include being overtired, starting or stopping medications, becoming pregnant, or undergoing any physical stress, such as surgery or an injury.

Lupus Flares and Lifestyle Changes

The best thing you can do is live a healthy lifestyle,” says Ellen Ginzler, MD, a professor of medicine and chief of rheumatology at State University of New York Downstate Medical Center, in New York City. “Stay active, eat a healthy diet, stay out of the sun, and don’t smoke.”

Other things you can do include:

Visit your doctor regularly. To maintain your health, make sure you stick to scheduled doctor visits and let your doctor know if symptoms seem to be getting worse.

Get plenty of rest. Manage your schedule to avoid becoming overtired or overworked.

Watch out for stress. Some stress is unavoidable, and having a chronic disease is stressful by itself, but it’s important for people with lupus to avoid putting themselves in stressful situations when possible. Learn some techniques that help you manage your stress. Meditation is an excellent way to reduce stress and decrease your risk for a lupus flare.

Avoid physical stress. Regular exercise is a great way to stay strong and fit. If you need to undergo a procedure that will require recuperation time, schedule it when your lupus is not active. It’s best to wait to get pregnant until your doctor clears you for it, for the same reason.

Avoid sunlight whenever possible. If you have to be in the sun, use a sunscreen with a high sun protection factor (like SPF 70) and wear protective clothing. Make sure your sunscreen protects against both UVA and UVB rays. Remember that halogen and fluorescent lights also give off ultraviolet light, so avoid prolonged exposure to them as well.

Take your medications as prescribed. Never start or stop a medication without checking with your doctor first. Many medications, including some over-the-counter drugs, can trigger lupus flares. Some antibiotics in the sulfa family, for instance, increase sun sensitivity and may increase your risk for a flare. Talk to your doctor or pharmacist before taking any new medication, supplement, or herbal treatment.

Be careful with certain foods and supplements. Avoid alfalfa sprouts, which contain a substance that may increase inflammation and trigger a flare. Some people may have a similar reaction to garlic, which is sometimes used as a health supplement. Other supplements that have been linked to lupus flares include melatonin, often used as a sleep aid, and echinacea, used to fight colds.

What Should You Do If You Sense a Lupus Flare Coming On?

Many people with lupus eventually become attuned to their body’s rhythms enough to sense when a possible flare is coming. At these times you can rest and use stress management techniques, but once actual symptoms of a flare begin, you shouldn’t try to handle it on your own. Some common flare symptoms include:
Increased fatigue, New or worsening rash, Joint and muscle pain, Headache or dizziness, Sores or ulcers in the mouth, Swelling in the legs, Fever, Any new symptoms
When you think a flare is starting, it’s best to see your doctor as soon as possible.

The best way to manage lupus and avoid flares is to learn as much about your disease as you can and to follow these simple guidelines: Listen to your body, learn what your own triggers and early warning signs are, stick to your lupus treatment plan, and take good care of yourself.

Back to School With Lupus: For the Parent

Back to School With Lupus: For the Parent Posted on ctlupus by ctlupus

It can be hard enough as a parent finding the time and energy to send your child off to school every day. For lupus patients, this challenge is even greater. 

Last week on the blog we discussed helping your child with lupus transition back into the school year. However, what if it’s not the child who has lupus, but the parent? If you are a parent with lupus getting ready to send your kids back to school make sure you’re prepared. Here are some tips to help you lower stress and stay healthy this school year.

Make your health a priority

Listen to your body and do what’s best for you. Move at your own pace and be willing to say no. You may feel guilty putting your health first, but if you don’t you will end up wearing yourself out making you more susceptible to a lupus flare.

Tell your family how you’re feeling

Communication with your family is key with lupus, especially when one day can be great and the next not so great. Let everyone know exactly how you are feeling each day. A number scale is a good way to express the discomfort and pain you may be having. This can help your family understand better and adjust expectations accordingly.

Stay organized

Help prevent unwanted stress by staying organized! Check out some tips on the blog at https://ctlupus.wordpress.com/2015/08/18/time-to-get-organized/  and be sure to take a look at our “Organizational Tips” Pinterest board, https://www.pinterest.com/ctlfa/organizational-tips/

Ask for help

Don’t be afraid to seek out help when you need it! Get into a routine of having scheduled help come throughout the week. This will help lower your stress and give you some rest time if needed so that you stay healthy! Ask family members to watch the kids or hire a neighborhood teen to be a mother’s helper after school!

For more information on parenting with lupus visit http://www.lupus.org/resources/15-questions-dealing-with-stress-of-being-a-parent-with-lupus

Explaining Lupus to Just About Anyone How to Explain Lupus to Family,Friends, Colleagues, Children and Acquaintances

Explaining Lupus to Just About Anyone How to Explain Lupus to Family, Friends, Colleagues, Children and Acquaintances thank  you to  Brenda Campbell.  And  the upus-upus-effect.com.com  for this wonderful information.   I would also recommend for you to sign up for their emails. They have with the kids to help you manage your own. 
Explaining Lupus to Just About AnyoneI know we’ve all heard it. Those five little words of no more than three or four letters each. “But you don’t look sick.”

Lupus is one of those “invisible” illnesses. Most of the damage caused by this mysterious, chronic illness is internal. Certainly, there are external signs at times – hair loss, instability, skin rashes, and in my case, the constant companion of an oxygen tank. However, this external damage is only a fraction of what is really going on inside.

As a result, explaining Lupus is not an easy task. I know that if I share all of the symptoms and complications I have, many people will think I’m exaggerating – especially if it is thrown out there haphazardly or in a disorganized fashion. I have felt judged on more than one occasion because so many of my problems cannot be seen from the outside. I’m sure we have all experienced that at one time or another – but it doesn’t change the reality of what lupus is and what lupus does. The support of others – and their acceptance – is something we all need.

I can recall several instances when I have matter-of-factly told people of my condition only to discover that they have never heard of lupus. And those that have heard of it often do not understand it.

Lupus is not easy to define. There is no clear-cut description of what it is or what it does because it can attack so many different body systems that no two people have the exact same lupus. It has many different faces and presents itself in many different ways. It continues to evolve and change. It seems that once I get a handle on it, something new pops up.
Honestly, one of my biggest fears is that people will think I’m ‘shopping for sympathy’ or ‘pity-seeking’. This is simply not the case. But, I do want people to understand because it affects what I am able to do. My abilities can change on a daily basis – good days, bad days, really bad days, times when I’m flaring on maximum overdrive and times when I almost seem ‘normal’ – if there is such a thing.
I have found myself needing to explain Lupus in a variety of settings: with family and friends, to my third grade students, and even in social or professional situations. Each explanation may look different depending on who the audience is, what they need to know, and why they need to know it. I would like to share what it might look like in each of these scenarios. It’s never easy, but with a plan of action tailored to fit a variety of circumstances we can be prepared to explain our “individual” lupus accurately, concisely, and authentically.

The disease is referred to as “lupus,” the Latin word for “wolf.” When lupus was just beginning to be recognized as a medical disorder, it was thought that it was caused by a wolf bite – probably because of the distinctive symmetrical red or purplish scaly rash that at least half of those with the disease develop on their faces, also referred to as a “butterfly rash.”
Lupus is an unpredictable and misunderstood disease that attacks different parts of the body. It is challenging to identify, tough to live with, and an obstacle to address and treat.
Lupus is an autoimmune disease where the body’s immune system becomes hyperactive and attacks normal, healthy tissue. This causes symptoms such as swelling and inflammation, and damages the joints, skin, blood, heart, brain, kidneys, lungs, bones, nervous system, etc. Lupus can attack any organ or part of the body.
When the immune system is functioning properly it makes proteins called antibodies in order to battle and safeguard against antigens such as bacteria and viruses. With lupus the immune system is not able to tell the difference between antigens and healthy cells. This leads the immune system to attack healthy cells – not merely antigens – inducing swelling, discomfort, and tissue damages.
According to the Lupus Foundation of America (LFA), 1.5 to 2 million Americans have some form of lupus. The disease has an effect on both men and women, however, women are diagnosed 9 times more often then men. Lupus is usually diagnosed between the ages of 15 and 45.
Other risk factors include exposure to sunlight, some prescription medications, infection with Epstein-Barr virus, and exposure to certain chemicals.

LUPUS HAS YOU DOWN?

Lupus has you down? Give yourself a pep talk.I know it’s hard but, go to the mirror smile and say, “I Love Me Beyond Lupus I am always amazing!”  You’ll  be amazed how great you will feel. Your words  to yourself do make a difference! 

#LupusInColor

Examined Lives: On World Lupus Day, one patient’s story about life Of Tiffany Peterson

Here’s a wonderful post from  Examined Lives: On World Lupus Day, one patient’s story about life By Tiffany Marie Peterson

  
This February 20th was my third-year anniversary of being diagnosed with lupus.

I have had joint problems since I was little. But in January of 2010 I lost my grandmother to throat cancer and shortly afterwards my symptoms because so severe I couldn’t move out of the bed. It took me about a month to be properly diagnosed. I was first diagnosed with rheumatic arthritis, but my general practitioner (GP) is so hands-on; he referred me to a rheumatologist right away so I wasn’t misdiagnosed for long.

Lupus is such a mysterious disease. One moment its not active at all, and the next moment completely active. I could be having symptoms like swollen achy joints or chronic fatigue without any warning. There are so many “ifs.” You never know how your day is going to go until it ends and you never know what what’s coming down the pike.

Putting a Team Together

When you have lupus, you have to manage multiple care providers, including nephrologists, GPS, and a rheumatologist. I’m on my third rheumatologist now, because the first two wouldn’t let me an empowered patient. That means that you’re enabled and educated, and you know how to take part in your own care. I just started seeing my new rheumatologist that I have only seen a couple of times. I finally found a rheumatologist who was willing to sit down and work with me and not at me. It took me about two years to get this team together.

I’m on a drug that may cause eyesight issues, so I also have an opthamologist. I have to see a psychotherapist and a psychiatrist – lupus itself causes depression – so each month I have about six doctors’ appointments minimum.

Technology Helps Communications

I first go diagnosed my rheumatologist wasn’t open to sharing my medical files, so when it came to making decisions she didn’t care about what I had to say. Now, I have a patient portal that allows me to send my GP e-mail, so I can email him whenever something’s up, and he can get in contact with the other doctors.

I don’t know if many patients have patient portals, but it helps me a lot. The fact that I can just email my doctor is wonderful, because when you call the office you almost never get the doctor. But when I email my GP, he responds within a day or two.

Of course, you also have to have a copy of your own health records to share when necessary. It’s so important. I tell my lupus brothers and sisters, make sure you always have your own health records with you.

Still, it’s not like I can look at my charts online. All of my records are paper records. I have no idea why I can’t get them electronically. Or diagnosing or medications. Even my GP will still use a book to find out whether or not medicines will clash, and I’m like, ‘Can’t you go online and find out whether that’s happening?’

I usually use a health app, CareCoach. It helps me prepare for my visits so I can write down all the questions I have to my doctors. It also helps me record all my doctors’ visits, so I can just play back my experience and get the information I need.

It does make me feel more in control, and definitely more hopeful. It’s a good feeling when everyone is on the same page and all of your doctors are working towards the same goal. It definitely feels more empowering, and it gives me hope that I’ll have a better outcome.

On Insurance Hassles

There was a huge hurdle in getting health insurance. I couldn’t afford it. I’m listed as permanently disabled, so managing my healthcare is a lot more straightforward, but there are still some hurdles. I have so many doctors appointments and it all adds up, especially when it comes to medical billing. Every single time the mail comes I get a new bill, so I’m always busy getting through all that.

In the Hospital

There is so much that happened to me in the past six months. I had a hospital stay recently. I had a urinary tract infection that went straight to my bloodstream and caused all of my organs to shut down, so because of that I had to have a blood transfusion.

I went to many different hospitals during my recent visit. I have a family hospital, which is in the Bronx, but prior to that I was in two other different facilities that did not work with me. They weren’t practicing participatory medicine, where the patient is at the head of the table in their own care. They worked hard at my family hospital to follow my wishes and to work closely with my care team.

Finding a Patient Network

One thing I would tell other Lupus patients: Don’t be shy to ask your doctor questions. A lot of us can get intimidated when we go into the doctor’s office, because maybe the doctor’s bedside manner is not that great.

Maybe the single biggest step a patient with chronic illness can take is talking to other patients. Lupus patients are always talking to each other online to help us manage our care teams. It’s like, ‘We’ve discussed the issues with each other, now let’s go talk to the doctor.’

I feel like social media in itself has been really helpful in managing my own care, because there are so many patients out here who are veterans and have been managing this disease for 20 years and more. That’s how I found my first mentor, my first year with lupus, and now she’s one of my great friends. She’s been one of my close mentors ever since. 

ALL TREATMENTS

Originally posted on Lupus In Color:

All treatments will be different for every lupus warrior. Lupus warriors, make sure you don’t put one another down because you chose a different route to treat your lupus. We need to be each other’s support not each other’s nemesis. It’s important to share, but it’s just as important to understand that everyone’s treatment will be different and that everyone will need to do what works for them.

Anti-Inflammatory Berry, Watermelon, and Ginger Smoothie

Yield: 1 large or 2 small servings

Ingredients

1 heaping cup watermelon chunks (be generous!)

1 1/2 cups frozen mixed berries

1 inch piece ginger, peeled and chopped (if you’re using a conventional blender, you may wish to grate the ginger before adding it, so that it blends more easily)

3/4 cup coconut water

2 teaspoons chia seeds

1/4 Hass avocado

Instructions

Blend all ingredients and serve.
Whether inflammation concerns you or not, hopefully you’ll find a way to incorporate this cooling treat into your day soon. It’s a new favorite for me, and I’m excited to share it with you.

Time to Get Organized! Posted on by ctlupus

Time to Get Organized!

Posted on August 18, 2015 by ctlupus

Are you ready to go back to school? The start of another school year always brings new organizational challenges. For lupus patients, this challenge can be even greater due to the symptoms lupus brings. The term “lupus fog” is one that is familiar to many patients. The phrase reflects the difficulty that patients may have in completing once-familiar tasks such as remembering names and dates, keeping appointments, balancing your checkbook or processing thoughts. In order to stay on top of tasks this school year it is important stay organized! Make sure you and your family is ready with these helpful and creative tips to make the transition back to school as smooth as possible!

Organize your entry way
With the amount of traffic going in and out of your house this fall, make sure you can find everything you need without having to dig around a mess!

• Make sure you have a designated spot for keys like a key rack or dish.
• Create a phone charging station. Power off and place your phone there at night that way you’re never left with a low battery in the morning!
• Place a hook for each family member on the wall to hold backpacks, purses, coats, etc.
• Organize hats, mittens, scarves, etc. by having individual storage bins for each family member.
• Invest in a shoe rack to avoid looking for that second sneaker every morning!
• Hang a dry erase calendar so everyone knows the plans for the day!

Save important school papers

Avoid important school papers getting thrown out or crumpled up in the bottom of your kids backpacks. Create a folder for each child and save anything they bring home with them throughout the year. Keeping it all in one place will help to avoid last minute panic!

Plan meals for the week
It can be easy to order takeout when you’re stressed and on the go, however not only is it expensive, but very unhealthy. It is important for lupus patients as well as their families to maintain a well-balanced diet.

• Keep a dry erase board in the kitchen to write down items you run out of throughout the week.
• Print out healthy recipes before you shop so that you know exactly what ingredients you need for the week.

For quick and healthy dinner ideas visit the blog at https://ctlupus.wordpress.com/2015/08/14/healthy-30-minute-meals/

Additional organizational tips can be found on our Pinterest board at https://www.pinterest.com/ctlfa/organizational-tips/

Rejoice Aching Hand Sufferers! – Product Review By PJMOORE

I’ve been seeing a lot of lupus patients talk about sore, aching hands and I am of no exception to this as well.  For years my doctor swore up and down and it was rheumatoid arthritis yet nothing she prescribed seemed to really help with the pain, stiffness and red swollen joints.  Creams and ointments didn’t help and the only relief I ever really had was my husband massaging my hands.  (putting those massage therapy classes to work!) Some time ago, I saw a commercial for Tommie Copper products.  My husband had just had knee surgery and was looking for a good compression piece for his knee.  When we went to Tommie Copper’s site, I saw they had plenty of other products there as well – specifically, gloves for me!  My husband urged me to purchase a pair just to see.  I could always send them back, right?

I bought the half finger gloves since my pain really didn’t extend out to the tips of my fingers and I wanted to be able to have full gripping action.  I tend to only wear these at night unless my hands are having an unusually BAD day.  Plenty of people wear them to work all day – just depends on what kind of support you need.  The material is stretchy and very breathable.  I don’t feel hot in them at all.  They do slightly snug against your skin, providing a gentle compression.  They are NOT super tight if you order your size correctly.  When I wake up, my knuckles will have went back to their normal size and the aches/pains have subsided.  From day 1, I felt am amazing difference and was convinced.  (hubby felt the same way about the knee one for him as well)

At $29.50 for the pair, I think these are a steal considering they have been the near only thing to provide relief.  They’re washable and seem to have a long life.  I’ve had mine just over a year now and there is no fraying, snagging or stretching out of the material.  If you read some of the reviews, some people pointed out that the half finger versions are hemmed around the fingers and frayed.  Mine haven’t frayed at all and I’ve washed these suckers a hundred times over now.  I guess it would maybe depend on what all you’re doing with them on, how long you wear them and how you wash them.  I always threw mine in a laundry mesh bag and then air dried them and I’ve had no problem at all.

PS:  Don’t forget to check the sale/clearance section.  Sometimes they have some great steals in there!

PSS:  This will be my last post for awhile.  My gastric sleeve bariatric surgery is Wednesday so I will be out of commission for a few days.  Taylor in the meantime will be fielding comments and posts!   Ooh, and if you want to follow my bariatric journey, I have a YouTube Channel called Jiggly Jill.  Happy to have you pop by!

Much love! See you post-op!