Guest Post: 10 Tips to Life with Lupus

Lupus is a condition that causes your body’s and your immune system to fight against you 24/7. It can affect almost every part of your body including the heart, skin, kidneys, lungs, joints, blood cells, and even the brain. It is a chronic condition, it won’t go away, so once you’re diagnosed with Lupus, you have to learn to live your best life with it. The effects of lupus vary from person to person, sometimes being completely debilitating, sometimes just coming in waves, sometimes being minimally “visible.” All you can do is manage symptoms and make necessary changes to your lifestyle and stick to treatment, most will be able to live a happy life.


Here are ten tips to live a little better with lupus and make the best of this life:

  1. Don’t Compromise on Rest and Sleep
    Fatigue is a common symptom of lupus, which can be dealt with by maintaining a healthy sleep cycle and abstaining from overwork. Make adjustments to your bedroom to make slumber time as comfortable as possible. Do not consume any stimulants after sunset, in order to achieve7-9 hours of uninterrupted sleep at night.
  2. Exercise Daily
    Regular exercise boosts the immune system, which is why it is highly beneficial for everyone living with lupus. However, as lupus triggers increased fatigue and joint pain, do not opt for high impact workouts. Stick to lighter exercises, such as walking, cycling, and yoga.
  3. Quit smoking
    Smoking is injurious to the heart and lungs, which are already compromised in the case of lupus. If you want to prevent early onset of cardiovascular disease and lung problems, break the habit of smoking cigarettes and other stuff that could instigate charges for a drug crime.
  4. Avoid Drinking
    Many people having lupus suffer from kidney failure at a young age. Alcohol is very bad for the kidneys, especially if they are already in a vulnerable position. Alcohol can also react with certain medications prescribed to lupus patients, causing side effects or lowering efficacy.
  5. Keep Clean
    Since lupus makes us susceptible to infections and allergies, we need to be extra concerned with hygiene. Always carry sanitizer when you leave the house, refrain from touching contaminated services, and prefer meals prepared at home.
  6. Protect yourself from UV Rays
    Sensitivity towards the sun is another common symptom of lupus, so avoid going out during the day and consider yourself a vampire. If you have to go out in daylight, wear sunscreen with a minimum of 30 SPF and try to stick to shade. Extremely bright indoor lighting can also expose you to harmful UV rays, so fluorescent bulbs at home can be covered with a light shield that filters the damaging rays.
  7. Keep your Mental Health in Check
    Stressing out can set off and aggravate flares. A flare in lupus patients can be defined as an instance where regular symptoms suddenly get severe or worse than usual. You should indulge in activities that relax your mind and body. If you are experiencing anxiety or depression, psychotherapy is recommended to cope with it.
  8. Eat Healthy
    There is no restrictive or special diet for people living with lupus. You shall be fine as long as you eat well-balanced nutritious meals. Oily fish is particularly good for you, being rich in Omega-3 fatty acids that help combat inflammation. A Vitamin D and calcium supplement will surely benefit your bones and joints; also, avoid very spice food, as it may instigate irritation, heat, and development of ulcers.
  9. Try Alternative Therapies to manage Pain
    Acupuncture, yoga, tai chi, chiropractic techniques, biofeedback, and hot baths are a few alternative methods to alleviate pain. They will help you relax and cut back on pain killers.
  10. Join a Support Group
    It always helps to acknowledge that you are not in this alone. Look up lupus support groups in your area where you can meet other people facing the same challenges as you. You may gain valuable advice for managing symptoms and make a few good friends for life.
Continue reading Guest Post: 10 Tips to Life with Lupus

A Day in the Life of a Migraineur

A guest post by John Martinez with Axon Optics…

A day in the life of a migraineur is not a normal day. It’s like a day of playing dodgeball, but if you get hit, you have to call out of work and live with head-splitting pain. Migraine triggers can appear at any time, and the migraine can rear its ugly head on a moment’s notice. 

Living with migraines can sometimes feel like going on vacation, without any of the relaxation of going on a vacation. You need to check the weather, make sure you’ve packed everything you need, and always have a backup plan in case things go south. 

If you have a friend or family member that experiences migraines, this is worth a read. A day in the life of a migraineur revolves around migraines: avoiding them, treating them, and explaining them to others. 

Avoiding Migraine Triggers 

A day in the life of a migraineur often includes dodging triggers. The list of migraine triggers goes on as long as a migraine itself. Any of the following could also cause a head-splitting migraine:

  • Hormonal changes 
  • Changes in the weather
  • Stress 
  • Certain levels of physical activity
  • Strong smells
  • Bright lights
  • Loud music 
  • Dietary changes 
  • Caffeine or alcohol 

 

A day in the life of a migraineur may include turning down an invitation to happy hour, staying inside when they want to go outside, or trying to change an event to a more quiet and low-key location. All the while, the migraineur is attempting to stay calm, because too much stress may just bring on the migraine they are trying to avoid. 

Throughout the day, migraineurs may be recording their diet and activities in order to discover and control their triggers. Not all people with migraines are triggered by the same things – the process of pinpointing triggers and then avoiding them can take up an entire block of a migraineur’s day. 

What’s In A Migraineur’s Purse? 

It’s not always easy to dodge these triggers; how are you supposed to know when a change in barometric pressure is going to cause numbness and pain throughout your entire body?  

If migraineurs can’t avoid migraine triggers, they will have to treat migraine symptoms. This means carrying a bag with everything they need to deal with migraines. 

Medication 

Over-the-counter medications offer some of the quickest relief to migraines. It’s always good to have your painkiller of choice on hand when symptoms start to arise. Over the counter medications include Aleve/naproxen, Excedrin Migraine, ibuprofen, and Motrin migraine. 

For those of us who have severe, chronic migraines there are also prescription medications that you can take when you have a migraine coming on, imitrex being the most commonly used. There are quite a few options for daily medications and even some shots that are supposed to work for a month at a time, but these are new and not always covered by insurance, like any other med, they don’t work for everyone.

Hormonal medications may also help to regulate migraines – but this is not applicable to everyone. Female migraineurs should talk to their doctor about taking contraceptives or other hormonal medication if they have migraines. 

A Cold or Hot Compress 

This lifesaver can also provide relief in a pinch. Cold or hot compresses against the back of the neck or on the forehead can help to numb some of the excruciating pain of a migraine. Unfortunately, it won’t treat blurry vision or other types of numbness. 

Sunglasses

I recommend FL-41 Glasses specifically!

Migraine glasses, also known as FL-41 glasses, have begun to give a lot of migraineurs hope. These rose-tinted glasses have been crafted to block out rays that trigger photophobia (sensitivity to light.) They can be worn indoors or outdoors. Migraineurs who don’t enjoy wearing glasses can order FL-41 contact lenses.

If you have ever experienced photophobia, you probably get significant relief by wearing sunglasses indoors. However, research shows that over time, it can make your light sensitivity WORSE. Maybe too much of a good thing really can be bad? If you want more information on this, check out, “Why Wearing Sunglasses Inside is a Bad Idea”   by John Martinez at Axon Optics.

Caffeine – coffee, coke, etc.

Like hormonal medication, caffeine can either cause migraines or treat it. A small can of cold brew or a soda sometimes helps migraine patients, but this is not a widely successful trick and is definitely not a long term answer. 

The Dark

Sometimes nothing helps with a migraine and you are stuck laying in bed in the dark, wishing away the pain and nausea and whatever else comes along with your migraine, everyone has their own “aura” or mix of symptoms – light sensitivity and sound sensitivity are some of the most brutal triggers, so stepping out of your cave, trying to turn on a light to focus on a task, or even just looking at your iPad to Netflix your migraine away can cause a massive wave of killer discomforts of all kind.

Eye masks/sleep masks and ear plugs are your friend. Noise machines with peaceful background sounds like fans, white noise, rain, etc. can also help block out the more painful noises and give your brain something to focus on that ins’t “dangerous.”

Support

Most importantly, don’t fight alone, except when you’re mid-migraine and can’t stand even the smallest of noises.

Whether you find your support through religion, family or friends, your dog, or an inspirational playlist on your phone, it is important to have something that helps you stay positive and hopeful. There are also support networks on facebook and other social media sites that can make a big difference. Of course, having a supportive doctor is also very important, so keep that number in your wallet, too.

…But Don’t Take Our Word For It 

Every migraineur has a different experience. While some people feel like an ice pick is piercing their temple, other people experience numb fingers and blurry vision. (These are real quotes, by the way.) Some people may experience symptoms for mere minutes, others, for hours or even days.

Whatever it feels like, it doesn’t just feel like “a headache.” Lucky for most, you won’t ever have to feel this pain, but part of being a migraineur involves telling people that migraines are not just headaches, that they are serious, and that they need more awareness, more research, and more treatment options, much like any other chronic, misunderstood illness.

 

Guest blogger John Martinez, in association with Axon Optics, edited / posted by Positively Rachel as an awareness post for chronic migraines

Thank you, John for sharing with us, as always I am excited and grateful to have a guest blogger!

If you want to read more about migraines and how they affect daily life, you can check out my own work on a previous post, “Chronic Migraines: More Than Just a Headache” or “Kids Get Migraines, Too!”.

A Guest Post: Does My Illness Define Me?

This is a topic widely discussed within the chronic illness community. You’ll see people saying everywhere, “Don’t let your illness define you.”

You know what? No, my illness doesn’t define me, but it is ONE of the things that defines me. But just here is a list of other things that define me:

My favorite color.
My favorite TV show.
My favorite animal.
The thoughts that go through my mind before I go to sleep.
What causes I feel passionate about.
What I like to do in my spare time.
What kind of characteristics I’m drawn to in a friend.
The way I react to specific types of situations.
The little things that make me laugh.
How introverted or extroverted I am.
What situations I tend to shy away from.
How I treat strangers.
How I treat my friends.
My goals and aspirations.
What makes you grateful.
The people you love.

And then there’s the debate. Does my health status go on that list? I’m not sure it absolutely goes on that list. But I can tell you without a doubt that my chronic illness affects almost every single thing on that list. And yeah, that makes it a big part of me in the end.

For example, the things that make me grateful have changed since I became sick. I’m grateful now for things that I previously wouldn’t have even known to be grateful for because of my illness. I treat strangers differently now because you never know what they’re going through. I do activities in my spare time that my abilities allow me to do. I feel extremely passionate about raising awareness for these causes that I may never have even been aware of had I not gone through this.

A very wise woman named Kerri Sparling, who has Type 1 Diabetes, coined the quote “Diabetes doesn’t define me, but it helps explain me.” And to me, that’s an incredible way of saying it.

I think the phrase “Don’t let your illness define you” should change to “Don’t let your illness be the only thing that defines you.” Because it is inherently a part of us, even if we didn’t choose it. But each and every one of us have other things that explain who we are even better than our illness does. And sometimes I do like to choose to focus on that.

 

Blog post by Michelle Auerbach. For more from her, check out her blog at http://www.lovelightandinsulin.ca/?m=1

 

A Glimpse at Inaccessibility From a First Time Wheelchair User

The other day I had my first experience using a wheelchair in public. Out of four and a half years of being chronically ill I’ve reserved wheelchair use to rolling in and out of the hospital, mostly out of pride. My illnesses limit me in so many ways, I didn’t want to allow it to take any other ability from me either. So instead of using a wheelchair as an aide when I was sick and weak, I powered through or sat on the sidelines. Recently, I decided letting life go by because I’m too stubborn to admit I need help is silly and I ventured out for a day of shopping with my girlfriend. I made it through the first few stores leaning on the shopping cart as support but by the end of the day it was clear I needed to use a wheelchair. I expected the stares from strangers but what I didn’t expect was the blatant inaccessibility “accessible” places are.

Because I was too weak, I required my girlfriend to push me. This tied up her hands and crossed out the option of a shopping cart or basket to carry our items. Suddenly I found lap full of various things we wanted to purchase. While this wasn’t a huge pain this time, it would’ve been a problem if we were buying more or heavier items. How can shops expect a wheelchair user to navigate with either a small basket attached to a motorized cart or no basket at all?

The second thing that was an issue was my sight line was cut in half making it impossible to see the higher selves and options on them. While shopping in one of my favorite stores, I found myself able to see only about half of what I normally experience while shopping. And forget trying to reach anything on a high self, it was hard enough to grab things from my sitting position in the wheelchair.

But by far the biggest problem we ran into (pun intended) was the fact that the aisles weren’t wide enough. I’m sure anyone will admit the aisles in stores are narrow and navigating it with a shopping cart is hard enough, but I never imagined how hard it would be to find my way in a wide wheelchair that wasn’t exactly fantastic at taking turns. We found ourselves bumping into corners and trying to wiggle our way out of the line of other shoppers trying to pass.

Until this recent experience, the inaccessibility of stores was never forefront in my mind. I knew my friends who use wheelchairs often encountered issues while shopping, I just never realized how frustrating and inconvenient it was. Making sure spaces are accessible is extremely important, but so is ensuring those spaces are truly accessible for all.

Blog by Carolanne Monteleone

You can find more by Carolanne @aheartforhumanity.wordpress.com