Gifts for Lupus Patients

If you or a person you love suffers from a chronic illness like lupus or fibromyalgia, you know that there are days when getting out of bed is nearly impossible.  There are mornings when your joints may ache, your muscles may be sore, or you simply need to rest.  During the holidays, many people are thinking about the gifts they are going to buy and the gifts they would like to receive.  This year, instead of Aunt Suzie buying you another Christmas sweater because you told her it didn’t matter what she got you, maybe help her out with some guidance.  We have compiled a list of 10 gifts for lupus patients that will help them throughout the year.  Seasonal gifts are nice, but why not get your lupus warrior something that can help them year round?

 

 

Best Gifts for Lupus

 

1. Insulated Gloves

Around 1/3 of patients with lupus also suffer from Raynauds Syndrome.  Raynaud’s Syndrome can cause your extremities, such as your fingers and toes, to feel numb and change colors during cold temperatures or even stress.  This is caused due to arteries that supply blood your skin to narrow, limiting blood circulation to affected areas.  This condition usually affects women more than men.  After experiencing cooler temperatures, it can take an average of 15 minutes of warming up before the skin returns to normal color.  Buying a quality pair of insulated gloves for your lupus friend can really help ease the chance of Raynaud’s flaring up.  It is important to look for insulated gloves that can protect the hands from extremely cold temperatures.  This makes a great gift for lupus patients!

2. Volt Heated Gloves

volt heated gloves review

Volt’s heated gloves contain their special patented Zero Layer® heat system that helps them eliminate bulk while providing more efficient heat transfer than any other heating system available.

Their system uses special thin heating panels that are constructed of thin stainless steel fibers that are woven into the fiber and protected with special thermal bonding sealing tape to help provide long-lasting wearability.  You can read more about their amazing and scientifically tested technology here.  You can also check out my in-depth review of these heated gloves here.

 

3. Heated Slippers

Heated slippers can also help with raynaud’s syndrome in lupus patients, but they also provide warm comfort during flares.  Many lupus patients experience chills during lupus flares and by having a pair of heated slippers, you can help them stay warm and comfortable during their flares.  These slippers have heating temperature up to 140°F/ 60°C, depends on ambient temperature, and accumulated heating time. It takes 5 to 10 minutes to feel warm, longer heating accumulate more warmness. The heater will automatically turn off after 2 hours for user’s safety.  Heated slippers for lupus patients are a very welcomed gift.

 

 

4. Bulk Sunscreen

Up to 2/3 of lupus patients experience sensitivity to the sun and even artificial lighting.  The sun is also considered to being a major trigger for lupus flares.  It is vital that all lupus patients wear sunscreen daily and year round to reduce flares and the even the chance of developing skin cancer as well.  It is important for lupus patients to have a broad spectrum sunscreen that has a high SPF.  Buying a large bottle of sunscreen can help your lupus loved one to never be without proper sunscreen again.  This is a gift most people would not even think about giving, but it is definitely one that shows you have put in thought and done your research about lupus. Supergoop! was started in 2007 with a mission to change the way the world thinks about sunscreen so that everyone will use it daily.  This is one of the most important gift for lupus patients.

 

5. Emu Oil

6. T.E.N.S Unit

TENS Units have long been used for muscle, joint, and even nerve pain.  Something that once could only be found in a doctors office is now available for home use.  Tens machines have been known to help block pain receptors in the central nervous system to manage pain and strengthen muscles via involuntary muscle contractions.  Pre-programmed pain relief modes deliver massage-like sensation to you. Customize your own pain relief mode & intensity to relax different pain areas at the same time! Match your needs however you want.  If you are looking for a lupus gift, a tens unit would be a great choice.

7. Universal Heating Pad

Studies have shown applying heat and warmth to sore muscles, ache and pains helps reduce and alleviate the discomfort. Heating products have been proven to reduce stress, calms nerves and encourages relaxation.  While many people may already own a standard heating pad, does your lupus loved one own that can work for their cold feet as well?  Serta Ultra Plush Triple Rib Electric Foot Warmer, a warmer that refreshes both you and your environment at an economical price. For anyone that suffers from cold feet you know how miserable that can be. Whether it’s from poor circulation, arthritis, cold floors, or simply just wanting more comfort the Serta Electric Foot Warmer can provide a level of soothing relief unmatched by any other product on the market.  While this is definitely suitable for warming cold feet, Serta also says it will work perfectly for waist, back, and abdomen areas as well.

8. Lupus Vitamins

Not only do most lupus patients have to worry about the financial costs of various doctor visits and prescription costs, they also worry about the cost of vitamins and supplements they may take to help manage lupus symptoms.  The gift of vitamins is one that any financially conscious lupus patient would appreciate.  By alleviating one less burden for them to worry about, by helping them out with their vitamin needs, you can really be a shining star to a lupus patient.  Lupavita was created for lupus patients and targets key deficiencies found in many lupus patients.  The vitamins were designed to help with common deficiencies in Vitamin D, Vitamin B12, and Magnesium.

9. Fresh Food Delivery Subscription

There are days when lupus patients may have difficulties getting out of the house to go and shop for fresh and nutritious foods.  If you have a loved one who is struggling with lupus, a gift of a fresh food delivery subscription can help their lives become somewhat more manageable.  Instead of using the little energy they may have for physically shopping, a food delivery service makes it easy to order their groceries online.  This can also help for lupus patients who may be overcoming an infection or trying to prevent an infection by preventing them from having to go out in public places.   Lucy for us, AmazonFresh is offering us a FREE trial on their service.  Be sure to use the link below to get your free trial.

 

10. Lupus Reference Book

The Lupus Encyclopedia is an authoritative compendium that provides detailed explanations of every body system potentially affected by the disease, along with practical advice about coping. People with lupus, their loved ones, caregivers, and medical professionals―all will find here an invaluable resource.

 

11. Lupus Friendly Makeup

When a lupus flare lasts for a while, some lupus patients feel their self confidence and self care slowly leaving.  By gifting lupus friendly makeup, you can help your lupus loved one feel a little like they did before they were sick.  Maybe plan a day for a mini make up session when they are not feeling well.  It is amazing what a little make up can do for someone’s self image when they are feeling down and not able to physically use their old makeup products anymore.  Many people are unaware that the brand Physician’s Formula was actually originally created for lupus skincare.  In 1937, allergist Dr. Frank Crandall created Physicians Formula as a tribute to the love he had for his wife Edith who suffered from lupus and longed for makeup that wouldn’t aggravate her sensitive lupus skin.

12. Lupus Sun Protective Clothing

UMORFIL
Ibkul UMORFIL LONG SLEEVE BOMBER MOCK NECK

One of the best gifts for people with lupus is a piece of UPF sun protective clothing.  Lupus warriors have to take extra precautions every single day in order to reduce their sun exposure.  There are many quality UPF clothing brands on the market right now and you may find yourself surprised at everything they have to offer; whether you are looking for sun protective bathing suits, shirts, dresses, leggings, etc. You can check out our favorite lupus sun protective clothing options here.  UPF clothing is a great lupus gift!

You can also check out my personal review of Ibkul UPF shirts here.

13. Lupus Face Masks

lupus face mask
lupus face mask

If you are looking for a lupus gift that will get used, try choosing a cool lupus face mask as a present.  2020 has proven to many of us that face masks are here to stay for lupus warriors.  There are many awesome face masks for lupus awareness, making this an easy choice for a lupus gift!

When it comes to shopping for that special loved one that is struggling with a lupus diagnosis, there are many gifts that show that you care and have researched their disease.  Any of the products listed above will be sure to let your lupus family member or friend feel appreciated and loved, especially during their toughest moments.  Don’t struggle with finding the perfect gift for lupus patients!

14. Lupus Shirts

Lupus- Lupus Awareness Shirt - Purple Ribbon T-Shirt-Unisex Jersey Short Sleeve Tee

Lupus Shirt: Lupus Lyfe "We Fight Together" Unisex T-Shirt

15. Lupus Awareness Blankets

Lupus- Lupus Awareness - Purple Ribbon Sherpa Fleece Blanket

16. Lupus Journal- Spiral Notebook – Ruled Line 

Lupus Journal- Spiral Notebook - Ruled Line - Lupus Medical Book

You may also consider these for lupus gifts:

 


You may also be interested in:

lupus tips for winter
lupus tips for winter




Lupus Awareness Jewelry

When it comes to spreading lupus awareness, nothing is more awesome than lupus awareness jewelry.  If you are looking for easy and chic ways to jazz up your lupus awareness, check out some of these amazing finds I found online.  Lupus awareness jewelry can range from lupus medical bracelets to lupus awareness earrings.  The possibilities really are endless if you are serious about helping to advocate for lupus.

lupus awareness jewerly

Lupus Medical Bracelet


What better way to advocate for lupus, especially when you are a lupus warrior.  Having a lupus medical bracelet can make it easier for emergency personnel to know your medical history if there were ever an emergency.  There are many unique and cute options for lupus medical bracelets on Etsy.

You can see one of my favorites here.  I love shopping on Etsy because it helps support many small business owners, some of which are fighting chronic illnesses as well.  It’s an easy way for me to show my support for fellow chronic illness warriors.  Amazon also has a really great selection of lupus medical bracelets that you make like as well.  There are so many great options to choose from, depending on your specific needs.

 

Lupus Awareness Earrings

Lupus awareness earrings are a small way to make a big impact!  There are a lot of really beautiful lupus awareness earrings on Amazon.  I honestly was pretty surprised at the number of really unique earrings that were available to help spread lupus awareness.

I know a lot of us may not really think about spreading lupus awareness until May for Lupus Awareness Month, but I am trying to be more adamant about spreading awareness year round.  These lupus awareness earrings are a perfect choice.  You can also check out these really cute purple spoonie earrings on Etsy.  How cute?!

Lupus Awareness Necklace

If you love wearing necklaces, you will adore this beautiful lupus awareness necklace.   This sterling silver Butterfly Series Necklace with Swarovski Crystals is a great way to advocate for lupus awareness.  The best part is that you can order this using Amazon Prime!  If you need lupus awareness jewelry quickly, I highly recommend ordering through Amazon.

Of course Etsy has some awesome handmade items that can offer a more unique option when it comes to looking for lupus awareness necklaces.  Check out some of their lupus necklace listings here.

Lupus Awareness Bracelet Charms

If you already own a bracelet that you love, a simple way to add lupus awareness could be to buy a lupus awareness charm to add to your collection.  You can easily add and change charms on a bracelet and this makes it a great way to really broaden your options when it comes to lupus awareness jewelry.  You could get a cute simple charm like the one above or check out some of the handmade ones on Etsy.  The options are really endless when it comes to lupus awareness charms because of the versatility in wearing charm bracelets.

 




My Life, My Story

Guest Post from Ellie, a blogger at My Life, My Story,  who shares her own personal opinions and experiences of living as a visually impaired woman who identifies as part of the LGBT community and who suffers from a mental health condition.

Hi folks, I’m Ellie, a lion maned, only just pushing 5′ Londoner who just so happens to have an
incurable genetic condition called Occulourcutanious Albinism type 2, OCA2 for short.

I also have the co-morbid conditions, poor depth perception (it’s always fun tripping up or downstairs or practically faceplanting the pavement when there’s a man-hole or other unseen objects just lying in wait, nystagmus (involuntary shaking of the eyes), photophobia (despite the misleading name this is not a medical fear of photos, it’s actually an acute sensitivity to bright and glaring lights), a strabism, a lazy eye for all us laymen out there and astigmatism (the eye is supposed to be the shape of a soccer ball but instead my eyes are shaped like a rugby/American football instead) thus it’s harder to focus on objects as clearly as people without astigmatism.

This condition means my body will never produce a normal amount of melanin. Melanin is the
lifeforce behind the colour of your eyes skin and hair. It also has a great impact on the
development of the retina … a light-sensitive layer of cells at the back of the eye partly responsible for the transfer of visual information from the eye to the brain.

Because I lucked out in the genetic pool my hair is a pale blonde, but hey, the up-side of that is I
don’t have to spend thousands of pounds damaging my hair by bleaching or stripping out other
colours. My skin is a lovely shade of pale mild and my eyes are a light grey-blue.

Although the aesthetic of albinism may have some naturally occurring aspects that others may
wish for, the reality is far from fun. I’ll take the ability to tan over blonde hair any day. My lack of
naturally occurring pigmentation means I have at least a 10% higher chance of getting skin and/or eye melanomas. I don’t relish any day when there’s even a hint of the sun … thankfully they are few and far between in the UK … and I have to take a suncream bath.

The real kicker in the teeth though? My eyesight is awful. I’m registered visually impaired. There’s nothing that can ever be done to correct my vision. To give you some context as to how bad my sight is, I have to use voice over on my phone, I have to magnify the hell out of my computer and iPad screens, god I love the inbuilt accessibility features of modern technology. When standing on one side of a road I can’t even read a pretty big, clear road sign unless I’m so close it looks like I’m making out with the sign.

My sight condition is classed as an invisible disability. To the regular jo walking down the street, I don’t look disabled. This is both a blessing and a curse. There is a lot less awkward small talk or ableist comments wrapped in a pretty bow tie as people ask, in sometimes very strange ways if I need help.

On the other hand, I often fear that people will assume I’m lying when I say I can’t see very well. This is particularly frustrating when I’m travelling around London and need to let train staff know that telling me ‘I need to head over there’ is meaningless to me as I have no idea where ‘over there’ is.

Realistically I should use a white cane whenever I go out. In the past, my stubbornness has
prevented me from utilising this useful mobility aid more than I should. However, due to the
current pandemic, I have never left the house without my trusty cane in hand because I don’t
think the general public would appreciate me unwillingly ignoring the 2-meter social distancing
rules and I don’t think they would take too kindly to me bumping into them just at the same time as I sneeze, just for the record I have hayfever people, not COVID.

At the ripe old age of twenty-nine, I’ve had many experiences both good and bad because of my
sight condition. Don’t get me wrong, I wouldn’t change having a visual impairment because it’s
part of who I am and has shaped my life and allowed me to have many fun experiences and make friends with people I wouldn’t have if I was fully sighted. I would change the way able-bodied people interact with and help those who have any level of visual impairment or any disability for that matter.

I went to mainstream school from nursery to the time I finished my GCSEs. So, from the Age of
three to sixteen I was, to my knowledge, the only visually impaired student in my nursery, primary and secondary school. As a result, I mostly socialised with able-bodied peers.
Going through my formative years in a mainstream school environment was both good and bad.

It taught me that life, society and institutions from schools, hospitals, government etc try their best to help but aren’t equipped to be fully inclusive of the disabled community and that facing
challenges and overcoming new hurdles is what everyone regardless of ability or disability have to do.

However, going through mainstream education as the only VIP student took a toll on my mental
health and my engagement with learning. Having to face a whole host of challenges in accessing
even the most basic of learning resources and lack of support from the staff meant that I had little in the way of truly accessible support. I’m surprised that I managed to pass as many GCSEs as I did because by the end I was so disillusioned with the whole system.

For my sixth form years, I went to s specialist boarding school for kids with visual impairments. To say that I wish I had gone to school a lot sooner would be an understatement. The level of
individualised and person-centred learning resources was incredible. I got my first real taste of
what it’s like to not be singled out because of my sight. I became more engaged in learning again.
Unfortunately, I didn’t do so well in my A-levels because of the rapid onset of what would be the
start of a long term battle with mental illness.

Despite my decline in health and poor results, I was accepted to university to study Contemporary Performance and three years later I passed with a BA 2:1 honours degree. Going to uni is a scary enough time for many students. Going to uni as a disabled student is a whole other level of stress.

Luckily I wasn’t worried about living away from home because I’d done that for the past three
years so doing things like laundry making friends, being away from home, cooking all that was old hat to me.  Having to apply for disabled students financial aid and gaining handheld audio recording devices that would allow me to record lectures instead of having to take notes all whilst having to let my faculty and relevant staff know of my disability?

That was stressful. I think I must have been one of the lucky ones. Contemporary performance isn’t a heavy reading or writing-based courses such as history, English or psychology. When we did have lecture hall based classes, my lecturers where outstanding, always making sure I had access to clear easily readable large print, print outs of the slides, they never expected me to be able to read as much as other students but comment as much as possible on what I had read.

My disability was never the focus unless I decided that it was relevant. It was the experience I wished I’d had when I was at school. I felt like a regular student rather than a disabled student.
After finishing my first degree I was at a bit of a loss at what to do. Thus I found myself applying
for a learning disability nursing degree at a different uni.

Unfortunately, my sight was a massive hindrance. I had three placements in a clinical mental health unit, a residential home and a community nursing and social work team. Despite passing my first two placements and all my exams and essays and class-based work. It was decided that due to my sight I couldn’t continue into the second year because it would be unsafe for me to continue training and thus qualify as a nurse.  This knocked me for six. I was left reeling, upset, my mental health was severely affected, a future, career and vocation were tugged from under my feet because of my disability.

Somehow, like an ungainly cat, only just managing to land on its feet after a scary freefall, I
managed to get my first real job. I was a support worker in an independent living home for adults with learning disabilities and mental health issues. I wasn’t a nurse but this was the next best thing.

Paperwork was a bit of a bitch and dispensing meds was a real pain in the ass. Using simple yet
effective assistive devices such as magnifiers and my phone’s camera easily made those tasks
much more manageable.

Other than that there were no barriers whatsoever to me doing the best job that I could and for the time that I was there I settled in well, I got on well with both residents and colleagues and again my sight wasn’t a thing unless I decided I wanted it to be. After a year  and a half, the stress of the environment and the long hours started having a negative effect on my mental health so it was time for me to leave for the sake of my own well-being.

When I decided to move on I moved to a school. I was a lunch lady and part-time teaching
assistant in a specialist school for kids with learning disabilities. I loved the work, the kids, even
more so than when I was a support worker. I could see myself becoming a full-time TA at this
school and staying there long term.

I applied for a full-time position five times over my two-year stint at the school. Each time I was
told I hadn’t gotten the job because of lack of experience. The first couple of times I accepted this
as part and parcel of the process because I hadn’t been there long and I didn’t have that much
experience. After the fourth and fifth time? That was when I realised that my sight was once again standing in the way of me getting full-time work.

This was never actually the reason given for me being declined full-time work. However when
you’ve been dedicated to a particular workplace and done as much as possible to educate
yourself, spending money and investing time to earn qualifications relevant to the job whilst taking any opportunity to gain on the job experience? You soon grasp that indirect discrimination is a major part of the brick wall you’re banging your head against.

It was with a heavy heart that I shut the door on that chapter of my working life. However, all the kids and colleagues I worked with will have a special place in my heart. My next working venture was in a mainstream nursery. In terms of my working life? Those six months really did highlight how much sight impairments have a major role to play in other people’s perceptions of your capabilities to carry out a job.

Now, my logical brain isn’t complaining about the fact that child safeguarding is much more prominent and stringent compared to what it used to be. But the emotional and mental illness side of me? Well, it really didn’t get that logical message. I spent three months as an early years practitioner and the last three months as a nursery assistant. As a nursery assistant, I was basically a glorified, cleaner, restocker etc.

Once again my sight had pulled the wool over my eyes so to speak. The following year was spent
as a housekeeper in a nursing home for the elderly. That, was mundane work that I was doing
because I wanted to continue earning money. My sight wasn’t a major concern. There were times when my supervisor pointed out things that needed an extra going over because I’d missed it but 99% of the time my sight was a footnote barely worth examining in my working day.

After a year of hard work and another severe downturn in my mental health, I decided that yet
again my overall well-being was more important than a job that I wasn’t passionate about and
saw no career progression in.

My last shift at the care home was on August 31st 2019. I needed some time and space to get my
mental health back in order. So, the next three months saw me relaxing, whilst applying for a
couple of possible volunteer positions.

In September I applied to volunteer at the RNIB’s resource centre in the charities London based
headquarters. The RNIB is one of the UK’s leading charities for the blind and somewhere I never
thought I’d end up volunteering or potentially working, despite having a visual impairment since
birth.

I started volunteering in November of 2019. In the three months that I was there before the
pandemic and social distancing and isolation came into play in the UK, I settled in quicker than I had done in any other workspace. For the first time in my working life, I felt like I’d found home.

The working environment and colleagues make this role the happiest, most relaxed work
experience I’ve ever had. Since working at the RNIB I’ve learned so much and become so much
more passionate about equality. I get excited to wake up and go into work. I feel supported even
when there is a busy chaotic day ahead of us. I feel like a valued member of a knowledgeable,
caring, funny team.

Working in such a positive environment has really taught me that life is tough. We don’t always
have to have a plan, we won’t always see or expect what’s around the corner. But learning to
adapt because of stressful situations, whether that be in the form of being in a rut at work or
dealing with inaccessibility or well-meaning yet unhelpful people who treat you differently because of your disability, is showing the strength of your character and ability to metaphorically put one foot in front of the other.

Thank you so much for taking the time to read this post and I hope you enjoyed.
If you’d like to check out my blog I post my own experiences and opinions as someone who is
part of the LGBTQ+ and disability community and thoughts and experiences of coping with a
mental illness, you can find me here.
You can also follow me on twitter: @EllieAOfficial
And Facebook: My life My story




One More Diagnosis Doesn’t Change Who I Am

Guest post by Diane Talbert. Diane is a Blogger, Speaker, and Patient Advocate at Power Beyond Psoriasis.  She is an inspirational fibromyalgia and psoriatic arthritis warrior.  Read below for her inspirational story.

If you’re living in pain everyday that’s not concentrated on just one knee or one elbow, it would undeniably be very hard to realize that your pain is changing. Whereas my joints were always painful and swollen, I noticed one evening that my muscles were also aching.

And how strange that was, because I hadn’t done any vigorous exercises recently! I decided it could be a strain and left it to heal on its own for the next week but very quickly, weeks turned into months. Collectively, my usual fatigue from psoriatic arthritis was also beginning to become more pronounced.

diane talbert power beyond psoriasis

Something Was Wrong

I consulted my doctor and after a few tests, I was diagnosed with fibromyalgia. It’s a mouthful to say, I know. But more a mouthful to take in too. I had so many questions! What was this? Where did it come from? How is it going to affect my life more than my existing conditions already are? This happened 3 years ago, and I remember my shock as well as how I had taken quite a mental tumble into near hopelessness. But I had a very strong support system – my husband, my children and my grandchildren. Not to mention the wonderful people I had come to befriend throughout the past 20 years of advocating for psoriasis and psoriatic arthritis too!

Kickstarting AGAIN My Fight For Life

The 17th century Japanese swordsman and philosopher Miyamoto Musashi famously wrote, “Know your enemy and know his sword”. I dove deep into answering all my questions about fibromyalgia because the only way I was going to overcome this was to know it as well as I could. It is important to distinguish that while psoriatic arthritis (PsA) and fibromyalgia are related, one does not cause the other.

PsA merely increased my likelihood of developing fibromyalgia because my body’s prolonged inflammation over the years had sensitized my pain sensors, sending them into overdrive. And whereas PsA is pain and swelling in the joints, fibromyalgia affects the muscles.

Not Backing Down On My Mission

After so many years of being the teacher to fellow psoriasis warriors who’ve needed guidance, support and encouragement, I’ve learnt to become a student myself too. I’ve spoken to numerous individuals who’ve shared their best practices of coping with fibromyalgia to improve my quality of life and I’ve definitely remained an open book, sharing my experience with anyone who asks. I may be one more figure to the statistics but I’m also one more voice to this special community.

Most of what I’ve busied myself with point to a specific goal; ending the stigma associated with psoriasis and everything that comes with it. Also, raising awareness within the medical community to find a cure. For the past 20 years, I’ve had the great privilege of hosting monthly support group meetings, volunteering at organizations, speaking at annual Town Hall meetings, and being a panelist at conferences. Educating and advocating for this cause is the purpose of my life.

Warriors Need Their Safe Space Too

As harsh as it might sound, sometimes, the support from our families and friends is not enough for us because nothing connects quite like someone else who suffers from our disease too. The empathy and the care my family show me has always been tremendous and unexpected but journeying with fellow psoriasis warriors through the monthly support group meetings I host has been equal parts healing too.

Every day, we fight for ourselves to be seen and heard by society. But at each support group session, we can finally lay down our guard and breathe a little deeper. Comrades side by side, we catch up with one another, laugh out loud at hilarious recounts of stories, and sometimes weep a little for someone else’s pain. I dare say that in a year, the number of people who would’ve benefited from these sessions will double.

One-Fifth Panelist, Four-Fifths Human

Aside from attending Capitol Hill meetings as well as speaking annually at Town Hall Meeting, I also had the honor of making up one of the 5 persons on a panel for a FDA conference on psoriasis and psoriatic arthritis. There were dermatologists and fellow psoriasis patients-turned-advocates like me.

This was really an extension of the work I had already begun — raising awareness for this disease in the hopes that medical research would soon find a cure. After all, the recent innovation of biologics was a breakthrough for our community.

Being a panelist has given me the autonomy to guide the team at the FDA towards fulfilling its mission of protecting public health where it ensures that drugs consumed are safe and effective. It also sheds light on a very important perspective that is close to my heart: the future of psoriasis awareness movements.

I remember how seeing fellow psoriasis warriors around me in that auditorium that day fueled me with so much encouragement. I felt the assurance that my efforts and my determination all these years will not be wasted because there are many people fighting alongside me.

Away from friends and colleagues, and within the safety of my home, I am still the same authentic woman everyone meets outside at events, speaker sessions and the workplace. I do get to be a little more vulnerable, but I firmly believe in carrying myself with consistency.

What I project at home should be similar to how I am with other people, dignified, confident and compassionate. And I hope my grandchildren will grow up to have even better qualities than I do because they are the future of this 21st century. So, I look forward to tomorrow with expectant faith and hope that I can make a change in my own ways.

Be sure to visit Diane Talbert at Power Beyond Psoriasis to learn more about her personal story and advocacy.




An Open Letter to my Healthy Friends During the COVID-19 Pandemic

To my healthy friends,

I felt the need to write this post today to really document the state of the new reality we are living in for those who may not be to this point yet.  Within the last few weeks, things have changed drastically in Ohio and many other parts of America and the world.  

I will be honest, I feel like most people probably thought I was frantic and overreacting when the first talk of coronavirus made the news.  Yet, as someone with a chronic illness and who is immunocompromised, I knew the seriousness of the situation. Having lupus and facing the possibility of a novel virus that could potentially kill me is terrifying.  

I have found it somewhat difficult for some friends to understand the seriousness of this virus.  I try to remember they are still young and healthy and how when I was the same, I thought I was invincible.  But, my how my life has changed dramatically since my lupus diagnosis and especially since my recent kidney cancer diagnosis.

No one really seemed to care about the virus that was killing thousands across the globe, it wasn’t in our neck of the woods.  It was some foreign virus that wasn’t our issue. I heard it was being hyped up by the media, that it was a government conspiracy. 

lupus and coronavirus

Some people couldn’t believe that a sickness could kill so many people, be so contagious, or cause an utter disruption to their ‘normal’ lives.  It has to be a conspiracy right? Who in their right mind would not allow sports to continue? What states would just shut down schools? What countries would purposely sustain economic losses?

You see, those of us with chronic health issues have been living a life of terror, panic, and isolation.  This is nothing new for us. We will probably fare better than our healthy friends and family when it comes to mentally processing being stuck at home, unable to work, and not able to go to all the social events healthy people normally do.

Unfortunately, this is the normal life of many people living with a chronic illness.  We have to constantly watch being around people who are sick. We panic every time we come down with a cold that leads to wheezing in our chests and are constantly scared of serious infections every time we get a fever.

I know you may think that we look paranoid from the outside, but the fact is a simple cold can cause us to develop pneumonia or worse. This is the reason I get so aggravated when I see friends I love have not been taken this seriously.  

Part of me wants to stand up and scream, but the other part of me wants to keep preaching advocacy for chronic illness warriors.  I feel as though the terrible experience in living a life with a chronic illness has prepared me for this pandemic. I feel if anything good can come from living a life of pain and isolation, it’s always worth pursuing.

As someone with an autoimmune disease, many of us are used to not being able to work or having to work from home.  I am used to being stuck at home in isolation from friends and family. I am used to being able to financially contribute to my family with only a part-time paycheck.  Finances were stressful as a chronic illness warrior before COVID-19 and will be stressful for many of us after as well.

Social events, ehh, most of you already know that it’s very rare to find me at a social event with a large group of people these days.  This is usually because either my lupus is flaring, I don’t want to catch anything, or even my sensory overload and social anxiety that has become an issue in the past few years. Large groups of people sometimes overwhelm me.  

Many people are dealing with depression, anxiety, and loneliness right now.  As a chronic illness warrior and as your friend, know that I get it. I get what crying on the bathroom floor feels like when you have no control over the bills that are piling up or the realization that you can’t teach homeschooling perfectly like other parents.  I get what its like to live in isolation with nothing but your thoughts to keep you company. I get what its like to ache for a real connection and know that acting on it is not worth the risk.

I get what its like to live in stretchy sweats for days on end, without a thought about putting on makeup or dressing up like I used to.  I get it when you look in the mirror and are shocked by the reflection staring back at you. I get the anxious feeling from being trapped inside your home and the social anxiety some of you may be developing right now and not even know it.

I write this letter not to be critical or angry at my friends who didn’t get why I was so worried about this virus long before it came to our shores.  I am writing this letter because I want you to know that I get it. I get what you are feeling right now and I want you to know this: I got you.

If you are suffering from depression, anxiety, or loneliness; know that you are not alone.  Millions of chronic illness warriors are living amongst you as neighbors, friends, and colleagues.  If you need someone to talk to, please reach out to me. Send me a message online or let’s video chat together.  I love and care about you and want you to know that you are worthy, even though it may be difficult to see among the chaos.  Always remember, we fight together!

 

lupus blog britt clarak




5 Celebrity Quotes for Chronic Illness Warriors

When you deal with a chronic illness, some days can be a lot harder to get through than others.  When I have days like this, I like to look up inspirational quotes that can uplift my spirit.  This can help me remain calm and hopeful during incredibly hard flare days.  If you are in need of a little inspiration, take a look at these 5 quotes for chronic illness warriors.  Remember, tomorrow is a new day and never give up the fight!  We are in this together!

celebrity chronic illness quotes

celebrity chronic illness quotes

celebrity chronic illness quotes

celebrity chronic illness quotes

celebrity chronic illness quotes




20 Day Lupus Inspo Journal Challenge: Day 2

lupus inspo journal challenge day 2

Day 2 of the Lupus Inspo Challenge for 2020 focuses on this quote:

My mission in life is not merely to survive, but thrive; and to do so with some passion, some compassion, some humor, and some style- Maya Angelou

Miss Day 1 of the Lupus Inspo Journal Challenge?  Start Here!

Oh, what a quote so fitting for me on a day I am struggling to get over my lupus flare that has been raging since before Christmas.  The past few weeks have been incredibly difficult for me physically and mentally.  I suffered from a horrible trigeminal neuralgia flare and a lupus flare the day before Christmas.  Even though I am currently on a Prednisone taper and my usual arsenal of Plaquenil, Methotrexate, and Benlysta; I am STRUGGLING.

So, this quote pretty much sums up how I feel today.  I am surviving…barely….but am I thriving?  There is a huge difference in being alive and really living.  I find that when you struggle from a chronic illness like lupus, some days it is hard to find that spark within us to keep on pushing forth.

The goal of this post is to focus on something that you have become incredibly passionate about since your lupus diagnosis.  This could be a favorite hobby of yours, your family, your job or any other person or thing that keeps you going on your worst days.

Since my lupus diagnosis, I have become more passionate about loving my family and appreciating everything, through the good and the bad.  My husband and two boys are the foundation to my life.  Without them, I am not sure that I would have the strength and resiliency I have had since being diagnosed with an autoimmune disease and later kidney cancer.

I cherish the days that I have with them because I know that we all have a limited time in this world and that has been amplified by being diagnosed with lupus.  I want to try harder and work harder to better not only myself but my family as a whole.  They are seriously a major driving force to what I am able to accomplish or how much I believe in myself.

Do you have a certain person or hobby that helps support your growth as a person and as a lupus warrior?  How does that person or hobby make you feel?  Do you think that you would feel the same had you not been diagnosed with lupus?

Take a few minutes to reflect and spend about 10 minutes journaling on this topic.  I hope that you are able to see that there is a difference in us simply waking up every day and us truly living.  We may not be able to physically do a lot most days, but there are many people and things that we can nurture to motivate us to live a little more.

Happy Friday and I wish you all the best and healthiest of weekends!

IF YOU WOULD LIKE TO SHARE YOUR DAY 2 POST ON OUR WEBSITE, PLEASE EMAIL ME AT INFO@LUPUSLYFE.COM.  AT THE END OF THIS 20 DAY CHALLENGE, I WILL PICK ONE RANDOM WINNER WHO SUBMITTED THEIR POST TO WIN A CUSTOM LUPUS LYFE SHIRT!




20 Day Lupus Inspo Challenge: Day 1

Lupus Challenge Day 1

 

Day 1 of the Lupus Inspo Challenge for 2020 focuses on this quote:

Be thankful for each new challenge, because it will build your strength and character. –Anonymous

It can sometimes be hard to be thankful for any challenges that come our way, especially while we are dealing with lupus.  Most of us are out here just trying to make it through a ‘normal’ day without a bunch of extra craziness being thrown our way.  Yet, life doesn’t seem to understand that.

So, for this inspo challenge, think about a way that being diagnosed with lupus has helped you build your character.  I am sure it’s way easier to think of ways that lupus has contributed to the destruction of our character, but really think about how it has helped you BUILD your character.

I had to really think about this before I was able to write on it.  When I was first diagnosed with lupus, I believe I went through various stages of grief without even realizing it.

Within a year of being diagnosed, I had become an angry person.  An angry person who felt like sh*t most days and could barely deal with any extra drama from anyone I was around.  This caused me to become withdrawn and short with others.

Sometimes, shamefully and admittedly, I was rude AF.  An unkind and angry person I had become, but that’s not what this journal post is supposed to be about right?

After going through that stage, I realized I was missing one thing in my life.  KINDNESS.  Kindness towards others and kindness towards myself.  I actually made a resolution at the beginning of 2019 to work on just being kind.

Being kind is FREE and most days, it really doesn’t take a lot of my spoons.

So my journal post today is about how I learned to be kind after my lupus diagnosis.  It was a character trait that had gotten lost previously and it was something I was missing in my life without even realizing it.

You see, being kind to others who are fighting invisible battles we may know nothing about, is rewarding.  Subconsciously, I think that maybe it was something I was always expecting and wishing others would display towards me during and after my diagnosis.

That worker at the restaurant that messed your order up?  Maybe they are dealing with brain fog or a chronic illness as well and they have to work because they won’t be able to feed their children if they call in.

Is it worth any of our spoons to get angry about something so trivial?  Is it worth the heartache that we may set on someone else?

These were the sorts of questions that I have tried asking myself before reacting to situations that are outside of my control.  When I would get angry and upset about things other people did or didn’t do, who was the person that suffered the most?  Usually, it was me.

I had to deal with the frustrations and I had to deal with the guilty aftermath as well that burned holes in my soul because I didn’t want to be so angry all the time.

I don’t know about you, but with the few spoons I have each day, I do not want to use them on things that will be irrelevant 2 hours from now.

Once I began to just let things go, I realized how much more I was able to get done mentally and physically.  I am proud to say that I do not let [most] little things get to me much these days, but it was a hard journey.

Writing this really puts it into reality and I must admit, that I truly feel sorry for the ways I previously acted and that I let things get to me that literally did not matter.

I wasted so much energy worrying and getting frustrated about the actions and words of others that I didn’t take time to appreciate the good in life.  As someone with lupus, when many days are a struggle, I feel like I lost out on some good times in life that I could’ve spent making myself happy instead of angry.

So with that confession, lupus has built my character by helping me become a kinder person.  There are many ways that we can be kind to others.

Listening to them during their struggles [even though we may be going through our own lupus battles], smiling at a stranger, holding the door for someone, donating to charity, complimenting a friend, and so much more!

If every day you make it a mission to do or say even ONE nice thing to someone, soon enough it will happen without much effort.  When we change our mindset and lives to a more positive vibe, we can all reap the benefits!

So, what is one way that lupus has helped build your character?

If you would like to share your Day 1 post on our website, please email me at info@lupuslyfe.com.  At the end of this 20 day challenge, I will pick one random winner who submitted their post to win a custom Lupus Lyfe shirt!




20 Days of Lupus Inspiration for 2020

It’s hard to believe that in a few days it will be 2020.  It seems like such a futuristic date, but here we are lol.  I am not sure about you, but 2019 was nothing I had envisioned it to be at the end of 2018.  I have found myself recently thinking about all of the resolutions I had planned for 2019 and how it seems that pretty much everything BUT those resolutions happened this year.  Ugh…ever have those kinda days…weeks…or years??

It is frustrating to feel as though we have not really accomplished the things that we had intended.  As a chronic illness warrior, I am sure many of you may be able to relate to that.  I feel a lack of control and devastation that I can not do everything that my mind wants to do!  I have so many goals and hopes and dreams and the list goes on…

And here we are at the end of another year.  I felt the urge to make some resolutions for 2020, but then I decided against it.

Instead, I’m making 20 inspirational days for 2020.  I am going to spend the first 20 days of the year journaling inspiration.  I am going to have 20 quotes and/or words as the topic for each day and I will journal how they fit into my crazy lupus life.

I will be updating my blog each day with my posts.  I feel instead of coming up with resolutions of things I need or want to change, why not inspire my mind instead?  I will update this post each day, so feel free to bookmark this page so you can find it easily each day.  Or better yet, why not join this Lupus Lyfe Inspo Challenge with me?

Join the 20 Day Lupus Inspo Challenge Here!

If I am able to keep myself mentally inspired to live the best life I can in 2020, I feel like I will be better equipped to deal with anything that comes my way in the New Year.  I am hoping to gain some self-reflection and self-correction on this journey.

When you struggle mentally and physically, it can definitely take a toll on your whole self.  I think it’s important to not always focus on the negative, the things we didn’t accomplish, or what we could do better.  I believe that when we focus on the things we are doing in this moment, the goals we accomplish each day, and the good that surrounds us we can move mountains within ourselves.

Here’s to a great year lupus warriors!

lupus blog inspiration challenge




Relax! 5 Natural Ways to Reduce Stress

Okay…okay!  We all hear that we need to relax sometimes, but are you taking your relaxation sessions seriously?  Chronic stress can induce a ton of problems within the body.

Check out these 5 natural ways to reduce stress and start relaxing!

 

05 ways to reduce stress naturally
05 ways to reduce stress naturally

Natural Stress Relief #1

Use Lavender

One of my favorite natural ways to reduce stress is by using lavender in my home and on my body.  Lavender is one of the oldest natural stress relievers in the world. Lavender is known to be uplifting, as well as soothing and helpful for reducing stress, anxiety, depression, and insomnia.

A study was conducted that measured the effects of lavender on stress in people that were being pricked with a needle.  Lavender aromatherapy in this study provided a significant decrease in the stress levels of those in the study compared to the others who received only oxygen and not lavender aromatherapy. In addition, it significantly reduced the pain intensity of needle insertion.

If you suffer from a chronic illness like lupus, lavender may be even extra beneficial if it is able to reduce anxiety and pain.

There are many ways that you can incorporate lavender aromatherapy into your natural stress relief wellness plan.

 

One of my favorites is by placing lavender sachets pretty much everywhere in my house!  The smell of lavender is so pleasantly soft and romantic, it literally is so comforting!

Another great way to use lavender is in your daily tea and lemonade!  You can purchase a bag of this amazing organic dried lavender flowers that are perfect for tea, baking, and lemonade!

 

 

 

Natural Stress Relief #2

Yoga

Many of us have heard about yoga and maybe even practiced poses over the years.  But did you know that regular yoga can help you keep your mind less stressed and your body more relaxed?

If you are not practicing yoga a few times a week and you are dealing with crazy amounts of stress, you may want to consider making yoga a more routine part of your life.

My favorite way to get a daily dose of yoga is on Youtube.  There are many awesome yoga instructors who can help you with building a healthy and de-stressing yoga routine.

I also recommend buying “The Yoga Bible“!  If you are serious about starting to relax your mind and body with yoga, you should check this book out!  They don’t call it “The Yoga Bible” for no reason!

 

 

Natural Stress Relief #3

Deep Sleep Music

Many times when we are dealing with a lot of stress, we find it difficult to sleep.  Our minds will race a thousand miles per minute and not calm down enough for us to fall asleep.

Some people with high stress levels can also experience periods of insomnia, making it even more difficult to rest our minds and bodies.

Using deep sleep music to help calm your mind can help you relax enough to fall into a sweet slumber.  This natural stress relief can provide refreshing sleep while only using the sweet sounds of nature.

I find nature to be extremely calming and relaxing.  If you like natural ‘white noise’ you should try out this music download of “101 Healing Sleep Songs with the Sound of Nature”. 

This music download provides a great length of nature sounds that can help you naturally relieve stress and help you get the sleep you have missing due to lingering stress.

 

 

Natural Stress Relief #4

Stress Management Device

 

Have you ever considered using a stress management device to help you monitor and work yourself through periods of stress?  Using a stress management device like PIP, is a great way to naturally relieve stress.  The PIP stress management device allows you to ‘visually’ see your stress levels as they are occurring.  Combined with feedback and training provided in their special apps, PIP will train you not only how to recognize stress but how to manage stress, be calmer and unlock a more relaxed and mindful state of living in your day to day life.

Using PIP takes only 5 minutes and is an enjoyable way to de-stress and refocus at home, in the office, or on the go naturally.

Natural Stress Relief #5

Meditation Coloring

Yes, even as an adult, coloring can bring great joy and calming effects into our hectic lives.  If you have not caved into the adult coloring movement, I encourage you to give this natural stress relieving art a try!  You may be pleasantly surprised at how mentally rewarding coloring can be when you are looking for ways to reduce stress naturally.

It is inevitable that our brains get overwhelmed at times by information overload, but it is essential for our health and well-being to be able to draw upon our own resources to deal with that stress.  “Anti-Stress: Meditation Through Coloring” is a great and affordable way to naturally reduce stress!