New Release!! Surviving Sjogren's: Life Beyond the Diagnosis

She's here!!!! My West coast friends received their copies first it seems. This project has been long in the making and I am so, so grateful for everyone's support. Living with Sjogren's disease has truly been a life changing experience. The years of waiting, wondering, not knowing who to talk to or where to turn for advice and answers are a not-so-distant memory. 

From the start of my journey, I felt so confused, misunderstood and completely lost. My desire in writing Surviving Sjogren's was to share a bit of my own journey and to provide some insight, resources and practical tips on how to better manage and thrive, living with this horrible disease. Turning pain into purpose, Surviving Sjogren's is for anyone living with the disease, loving someone with this disease or anyone wanting to be better educated about Sjogren's. 

If you too have had more questions than answers and need a little direction, Surviving Sjogren's just may be for you. Get your copy today on the Barnes & Noble website. https://www.barnesandnoble.com/w/surviving-sjogrens-netta-wilson/1147805428?ean=9798319626097

The direct link can be found above and below. I thank you again for your continued support, encouragement and love. From my heart to yours. ~ Netta

 Surviving Sjogren's- Barnes & Noble

 

#Sjogrens #Autoimmunedisease #resources #book #Atlanta #localauthor #rheumatology #immunology #chronic

Medicaid Facts You Should Know

 

Medicaid is so much more than most people realize. In the state of GA, 70% of Medicaid recipients are children, yes children. From autoimmune diseases to complicated life threatening disorders, our babies must be protected always. Just a little food for thought.

#medicaidfacts #children #foodforthought

Atlanta Mayor Andre Dickens: Championing Disability-Accessible City Project

Atlanta, GA-- a vibrant and bustling city, that has consistently prioritized inclusivity and accessibility under the leadership of the Mayor that never sleeps, Andre Dickens. As a city that prides itself on diversity and progress, Atlanta is making strides to ensure that all residents, including those with disabilities, can fully participate in and enjoy the urban environment. Mayor Dickens has been at the forefront of this movement, championing a variety of projects designed to enhance accessibility throughout the city. The most recent project of many is the "Atlanta Goes to the River "project. Safe to say that every Georgian has a love for the Hooch, but until now, everyon didn't have easy access. 

Today's installation, which includes an accessible ramp for those of us with mobility challenges, further highlight Mayor Dickens continued dedication and committment to accessibility and safety for every Atlanta resident and visitors alike. If you're in a position to not have to consider whether there's a ramp at the doc, seating every few steps, accessible parking or anything out of the "norm", take a breath and  consider yourself beyond blessed. All disabilities aren't visible, but trust me the struggle is very real. Often times public spaces, especially within the city, provide the bare minimum required when it comes to disability access, which can make attending events, dining---just everyday living, cumbersome and sometimes painful. So, this new river access---it's a big deal, a really big deal!!!

For those that may not know, this is one of  several initiatives by the Mayor  that has or will improve disability access in the city of Atlanta. These disability accessible  projects are not only essential for inclusivity but also serve to enhance the overall quality of life for all residents. Here are a few notable projects:

1. Accessible Public Transportation

One of the cornerstones of Mayor Dickens' efforts is the enhancement of Atlanta's public transportation system. His administration has worked closely with MARTA (Metropolitan Atlanta Rapid Transit Authority) to ensure that all buses and trains are equipped with ramps, lifts, and other accessibility features. Additionally, improvements are being made to stations, ensuring they are wheelchair accessible and provide clear signage for those with visual impairments.

2. Sidewalk and Intersection Improvements

Navigating the city streets is a challenge for individuals with mobility impairments. Mayor Dickens has prioritized the installation of curb cuts, tactile paving, and accessible pedestrian signals. These improvements allow for safer and more efficient travel across intersections and along sidewalks, making Atlanta a more pedestrian-friendly city for everyone.

3. Parks and Recreational Facilities

Inclusion extends to leisure activities as well. Mayor Dickens has spearheaded efforts to make Atlanta's parks and recreational facilities more accessible. This includes the addition of accessible playground equipment, paved trails, and adaptive sports programs. These enhancements ensure that residents and visitors of all abilities can enjoy Atlanta's beautiful outdoor spaces.

It is clear Mayor Dickens understands the importance of involving the community in the planning and implementation of accessibility projects. Hosting regular forums and workshops to gather input from individuals with disabilities, ensuring our voices are heard and our needs are met. This collaborative approach fosters a city that is not only accessible but also inclusive and responsive to its residents.The impact of these initiatives on Atlanta's community cannot be overstated. By prioritizing accessibility, Mayor Andre Dickens is ensuring that Atlanta is a city where everyone can thrive, and everyone is seen. These projects do not only benefit individuals with disabilities but also enhance the city's infrastructure and collective appeal.

As Atlanta continues to grow, Mayor Dickens' commitment to accessibility sets a powerful example for cities across the nation. His efforts demonstrate that inclusivity and accessibility are not just goals but essential components of a thriving, modern city. For those interested in learning more about Atlanta's accessibility projects or how to get involved, the city's website offers detailed information and resources. By supporting these initiatives, you are contributing to a more inclusive and accessible Atlanta for all. From affordable housing to accessibility, watching Mayor Dickens and his staff continue to transform Atlanta into a beacon of accessibility and inclusivity that meets the needs of all its residents is a testament to his vision and excellent leadership. Together, we can build a city that embraces diversity and ensures equal opportunities for everyone, and I couldn't be more excited. Mayor Dickens, all eyes on what you're up to next.   

N. Wilson 

#Atlanta #AndreDickens #Disability #Initiatives

Sjögren's Disease and Menopause: Understanding the Connection

 

 

As a woman,the process of aging in and of itself is enough to drive a sane person insane. The hormonal shifts, highs and lows, new aches, adult acne, hot one minute, shivering the next--these very "normal" changes are an obstacle course on their own. Add in an autoimmune disease & early onset menopuase, and you just may feel as if you're being punished for some unknown crime. For many women, this is the reality when they face Sjögren's disease and early menopause. These two conditions, though distinct, have a surprising connection that can significantly impact a woman's life. 

For those that are visiting for the first time( welcome, and thank you for coming) I am a Sjogren's patient, and have written extensively about what the disease is and my own personal experiences on this health journey. In a nutshell, Sjögren's disease is a systemic and chronic autoimmune disease. The identifying markers,are  primarily a lack of moisture or depletion of the exocrine glands ( i.e dry mouth, dry eyes etc.)  These hallmark symptoms of the disease also impact other parts of the body, leading to fatigue, fever, aches and joint pain. 

While everyone's experience varies, Sjogren's has many manifestations and often includes major organ involvement such as the kidneys, or lungs. It is estimated that about 1 to 4 million people in the United States are affected by Sjögren's disease, with women being disproportionately affected, comprising 90% of those diagnosed.

So what does all this have to do with menopause? Read on. Menopause is a natural biological process that marks the end of a woman's reproductive years, typically occurring around the age of 51. However, some women experience early menopause, defined as menopause before the age of 45. Early menopause can be triggered by various factors, including autoimmune diseases such as Sjögren's.

The immune system's attack on the body's own tissues in Sjögren's disease can extend to the ovaries, potentially leading to premature ovarian failure. This condition can accelerate the onset of menopause, creating a complex interplay between Sjögren's and menopause.  The many manifestations of Sjogrens combined with early onset menopause, can be confusing and hard to identify as symptoms of the disease can mimic symptoms of menopause. Women with Sjögren's often report menopausal symptoms earlier than their peers, which only exacerbate the challenges they already face.

Believe me, it is A LOT!! The mental and emotional rollercoaster is like nothing I've ever experienced, including Sjogrens itself. 

Dealing with the dual challenges of Sjögren's disease and early menopause was overwhelming to say the least, but with familial support, faith and a supportive care team, were vital  in helping me navigate these very choppy waters. I felt alone, confused and just plain lost. As I began to further research the connection, I was floored by the statistics I found. 

• Prevalence of Sjögren's: Approximately 0.5% of the population is affected, with a significant majority being female.

• Early Menopause Statistics: Around 5% of women experience early menopause, with autoimmune diseases being a contributing factor in many cases.

• Overlap: Studies suggest that women with Sjögren's disease are 10 times more likely to experience premature ovarian failure compared to the general population.

The data is clear and it is horrifying! Reading about it is one thing, experiencing it is a chapter in a book all it's own. If there's one lesson I could share from my own experience it would be ADVOCATE FOR YOURSELF!! I cannot stress the importance of speaking up and speaking out enough. The care team I have now is wonderful, but trust I had to travel the road to Damascus to get here. I know what it feels like to be told "it's all in your head" "you're not old enough for menopause--yet". I heard so much negativity, doubt and gaslighting about my own body. Ladies, trust yourself. Trust the instincts that let you know a transition is taking place. Trust that you have lived in this body longer than your doctor has probably been alive. You KNOW when something is "off". Trust yourself !

Lastly, know that you are not alone and you don't have to walk this road by yourself. There are resources, organizations and support groups on every coast. Is it enough? No. Absolutely not, but we have to start somewhere. My hope is that the conversation will move beyond just women at a coffee shop or in the waiting room of a medical office. I hope that more businesses, communities, places of worship--everybody, will find women's healthcare worthy and important enough to make it a central focus. I'm praying that health outcomes for those of us battling autoimmune diseases will finally become important enough for community based organizations, businesses --you name it --to make us a priority. Ladies, be gentle with yourself. Menopause paired with an autoimmune disease isn't a concoction anyone would ask for but it does get better. 

The dark days, fear and anxiety really do get better. From my heart to yours. Til next time.

N. Wilson 💗

#menopause #autoimmunedisease #spoonies

Interior Spaces: Adapting Your Home to Your Disability

Doorways, thresholds, countertops, bathtubs......other than the aesthetics, the size, shape, or placement of these features are rarely more than a passing thought.

For those living with a disability that requires the use of a mobility aid or are a part of the sandwich generation and looking after a loved one-- all of these features take on new meaning.

One of the areas that has become a problem for me is flooring. While I do love the warm, cozy felt of carpet, my allergies and mobility aides do not.  Which aid I need varies day to day but not one is compatible with carpet, so it's time for a change.

Through word of mouth and Instagram crawls, I made contact with a few companies for flooring. The company whose product impressed me most is a new to me company called Flooret. I requested and received this gorgeous box of samples to help make my decision. 

Based in Smithville, TN, Flooret is a direct to consumer company, offering sustainable, luxury LVP in a variety of finishes. For my needs, I was in search of a material that was certainly allergy friendly, sustainable, insulated, water resistant and shock absorbent. I wasn't sure any one product would be able to meet such expectations....and for a reasonable price, but Flooret definitely did not disappoint.

Through they're very ADA digitally friendly website ( thank you) customers are able to upload photos of their space and have a virtual view of what their chosen product would look like in their home. If uploading photos isn't an option, you can also utilize Flooret's pre- loaded room visualizer took as shown below.

Every bit of information one could need to make the best informed decision for their needs can be found on the FAQ page ( very detailed) , through the live chat option or through the Contact Us feature. All of this info and more can be found on their website at www.flooret.com

While I haven't yet scheduled my install, I feel good about the endless possibilities Flooret has to offer. Stay tuned... ❤️

#interiors #ADA #flooring #design

Grief, Grace and Gratitude: Permission to Mourn the life You Lost

 The concept of mourning something or someone that you can still see, touch, speak to-- something tangible--made absolutely no sense to me until recently. Ever the optimistic realist, I'm pretty good at finding the positive in just about anything.

Living with illnesses since birth, keeping an optimistic outlook is in part what made life bearable. Having worked in the Health/Human Services industry for more than a decade, consulting others on their journey of healing-- spiritually, mentally and emotionally was part of the job. 

As I've been out of commission with a horrible flare and some new symptoms the past few weeks, I had an epiphany of sorts. While I read all the books, meditated, prayed(without ceasing) and tried different therapies, the one thing I didn't do was give myself permission to mourn my own loss. 

To be fully transparent, these past few weeks have been pure torture, leaving me on complete bed rest and feeling isolated and alone. Long and debilitating flares are not new to me, but this one but different for some reason. While I watched a family friend gather some things for donation, I was overcome with feelings of sadness, anger and frustration. As she tried her best to comfort me and figure out what was wrong, all I could whisper was" I don't even feel alive anymore". 

The material possessions weren't the issue, but rather finally accepting--truly accepting-- that parts of my life and lifestyle as I had lived it were over. If you have flares you know we will do almost anything to not cry because it makes the flare that much worse but I just couldn't help it. 

I have full faith and belief that God can and if he chooses, will completely heal and restore my body. There is no doubt in my mind what God can do. That being said, I've had to accept where I am in the present and that hasn't been easy. The struggle is real when you hold out hope for what can be while trying to battle the reality of what a situation is.

I personally don't even like to speak the word "death". The word itself means a permanent end of something and my faith teaches me there is power in the spoken word, and to speak life over circumstances and situations, something I've always done. 

So how on earth do I balance this wave of grief in one hand while praising God and being grateful in the other??? Much like Ezekiel and the valley of bones, the lesson is one of transformation-- one that I believe every person living with chronic illness must reckon with on their own time, in their own way.

In that moment and the days that  followed, I had to give myself permission to grieve. It hurts that many of the things I could do not so long ago with ease-- cooking, hiking, strutting in my favorite pair of heels (all heels are my favorite) now require assistance or can't be done at all. That hurts. Accepting that in the present I live with physical limitations that I  may have to live with for the rest of my life was hard, heavy and necessary.  

It was necessary for me to say all of this out loud, acknowledging that in spite of my belief, my prayers, my doing all the things to manage my symptoms the best I can---my best still may not lead to restoration. Whew!! It's a lot...a whole lot. I hate feeling like such a burden to my loved ones.I miss hiking Stone Mountain just to see the sunset. I miss the spontaneity of a weekend getaway and you know what? That's okay. All of those feelings are perfectly okay. 

When I was able to sit outside the other day, I had to catch myself (again) from griping and complaining. The weather was gorgeous but I was irritated that I couldn't take the walk I wanted too. Literally at that moment, a cousin reached out reminding me it was the birthday of a recently lost loved one. I instantly felt a sense of guilt. This time not for my anger but for my lack of gratitude. 

Yes, it's normal and perfectly okay to feel the gamut of emotions that come with being chronically ill. That's called being human.

What's not okay( for me) is to not express gratitude (daily) for the grace God has given by allowing me to see a day someone else didn't get to see. How dare I. In spite of all the pain--physical and emotional--I'm still here and for that I am truly grateful. 

To anyone struggling, know this--- healing is a journey not a destination. Allow yourself to grieve whatever you feel has been lost. Cry it out, scream , write it down, walk it off-- release it- and when you're done, thank God you're still on this side of Heaven. 

No matter how dark the day, there's always someone much worse off than you and maybe, just this is your season to discover the power and purpose of your pain. Hold on warriors, brighter days are coming. Til next time ❣️

#grief #grace #gratitude #healing

Health & Travel Pt 2: How Altitude Can Affect Your Lungs

 Every Autoimmune disease or chronic illness is just as different as the person living with it. All of us warriors are keenly aware that we must take certain precautions when traveling based on our individual needs.

Of course we usually drop by the doctor's office for medicine refills, a CBC panel and a general  check up before hitting the friendly skies......but is that enough??

By necessity, I thoroughly examine property layout, exits, entrances, expected temperature etc. when planning any type of excursion. What I hadn't done up until now is consider planning an entire vacation based on atmospheric pressure and altitude. 

I LOVE resorts. Beautiful suites( fireplace is a must) impeccable dining and heavenly spa treatments. I've always wanted to visit Colorado-specifically Arabelle resort in Vail or the Little Nell in Aspen or the Ritz Carlton.....and yes, a Colorado Buffs game if anybody cares to donate a ticket. So what's holding me back you ask?? The altitude and my respiratory system.

As regular readers know I have Sjogrens disease and just about every manifestation that comes with it. It took years to get an accurate diagnosis and by then irreparable damage had been done. Sjogren's can & often does involve major organs. For me that includes a regular battle with my lungs. Breathing literally hurts. Inflammation of the lungs and spine are a manifestations of Sjogrens disease that aren't as often highlighted, but absolutely require extra precautions when flying.

I'm fully aware and very conscientious about temperature,as I will do just about anything to avoid or minimize a flare, but I never gave much thought to altitude and atmospheric pressure. 

I was sharing my desired travel plans with a relative when he interrupted me with a reminder that if I were going to Colorado, I would need to add a few days just to safely get there. I was confused. A flight from Atlanta to Denver is just over 2 hours. I didn't see the problem.

It's the Mile High City he said. Going from such a low altitude into a higher altitude , especially with your underlying condition spells disaster. I had never given that any thought. I later asked my doctor about this issue and her advice was virtually the same.

I began to feverishly research any and everything I could on this topic and found that while many people experience some level of altitude sickness when ascend to higher elevations too quickly, there are three very dang and severe forms that require immediate medical attention.

1. AMS( Altitude Mountain Sickness)- This can be mild, moderator severe. Symptoms include inability to walk, labored breathing even while at rest, confusion, and fluid retention in the lungs.

2. HACE( High Altitude Cerebral Edema) - This form of altitude sickness is caused by the leakage of capillaries in the brain. Symptoms include drowsiness, unstable gait, hallucinations, headache and extreme exhaustion- normally within 1 to 3 days of ascending more than 9800 ft.

3. HAPE ( High Altitude Pulmonary Edema) The most rare of the three, HAPE is potentially fatal and the symptoms include shot of breath, skin and nails turning blue, and a wet cough that produces a pink froth. Symptoms are generally noticed 1-3 days after ascending more than 9800 ft. It is recommended that if you're at a higher than normal elevation and begin to experience any of these symptoms, get to a lower elevation immediately and seek medical treatment.

So, what does this mean for my Colorado resort dreams?? Considering I already deal with systemic inflammation and fluid retention, I would need to take a few extra precautions before boarding a flight. The first of course being to get a check up before departure. Being certain that my lungs are clear and my oxygen levels are in tact would be the first order of business.

Next , I would need to  fly into a city with a lower elevation and stay a night or two. This allows the body to adjust , at rest and while active to the change in altitude and pressure. My physician explained that it would take but a moment for my lungs to fill with fluid and my oxygen levels to drop to potentially dangerous levels and quickly. I was in shock. I was fully ready to point, click and book. 

So, sad to say it looks as though that's a trip I have to reconsider--at least for now. Armed with more knowledge, it's clear that extra days, extra breaks and possibly a check in or two with a local care provider must be added to the itinerary to make this dream trip a safe one. 

 Remember spoonies, we cannot function like we did before. Flying in itself requires compression socks, hydration and all sorts of planning. I now know that I'm travel I have to always consider the elevation I'm going to vs that which  I've come from. It is vital to take all things into consideration before jet setting. After all we want to enjoy the vacation and live to tell about it.

So before you book that next vacay, consider your overall health and any potential risks. We only get one life. Enjoy but remember your health & well being is paramount. Til next time 🪷

#travel #Colorado #resorts #lifestyle #buffs #ritzcarlton #arabelleresort #health #lunghealth #littlenellresort #ski

Sjogrens disease & Oral health

 Dry eyes and dry mouth. For years that is what has been most associated with this disease. Use eye drops for that gritty feeling and drink lots of water to keep your mouth from being too dry. Conventional wisdom.

While the eye drops may help & you can't go wrong drinking more water, that does not adequately address or solve the problem. Number one, Sjogrens is so much more than dry mouth & eyes. Those are more or less identifying markers to help differentiate between Sjogrens and other autoimmune diseases. It has now been *determined* that Sjogrens is in fact a connective tissue disorder and can impact every major organ.

We'll discuss those points in another post, but in this piece I want to focus on how drastically Sjogrens disease can affect your oral health. Sjogrens disease is systemic and chronic. The inflammatory nature of this disease is a direct assault on the exocrine ( salivary) glands. 

In short- you produce very little to zero saliva. The result of this is a mouth that's more dry than the Attacama desert. This dry isn't clear your throat & have a drink of water dry. This is bleeding, inflamed gums, difficulty swallowing and chewing level dry. This type of pain can be debilitating & impact every aspect of daily life.

I experienced all of the above for years with no explanation as to why or any real solutions to improve my condition. I was repeatedly advised to get deep cleanings twice a year and just take better care of my teeth. This was what I now know to be some of the worst advice I could have been given.

A lack of saliva production and chronic inflammation causes bacterial infections, root caries, cavities and loss of enamel. The dental decay this disease can cause is nothing short of a nightmare--one that I lived until I finally was blessed with a dentist that understood the disease and put his patient's over profit.

Tip: If you have excessively dry mouth & tooth decay but haven't been diagnosed, you may want to get tested for Sjogrens.

Eating became almost impossible,as swallowing was difficult and with a constantly inflamed mouth, the pain was debilitating. When I finally found the right oral health care team it was too late.

The effects of Sjogrens had obliterated tissue, bone, gum and teeth. The only solution for me was full restorative surgery. This explained the persistent bacterial infections, bleeding gums, etc. I don't share this to alarm or frighten anyone. I'm sharing in hopes that someone else can be helped. Perhaps your dental troubles have just begun or maybe aren't severe. If that's the case, here's a few tips that may be useful.

1. Seek a dental care team with knowledge of Sjogrens and it's potential complications. They will be much more empathetic & understanding of what you're dealing with and can better assess your needs, creating a customized treatment plan.

2. Stimulate saliva production. This will vary from person to person, but dry mouth with Sjogrens hurts. I recommend trying Flintts Mints. This product is a hidden gem that I so wish I had learned about earlier. It is all natural & the primary active ingredient is the Spilanthes flower a.ka. the toothache flower.  It naturally stimulates saliva, and the mints have varying strengths based on your needs. A pic of my favorites and a link to the website can be found below.

www.flinttsmints.com

3. Reduce any food/beverage that is highly acidic & leaves your mouth dry. Add to your diet foods that will add moisture & are easy to swallow such as yogurt, applesauce & bananas.

4. Lastly, be gentle with your daily oral care. Use a soft head toothbrush or a waterpik. Rinse after meals with lukewarm water. Use toothpaste & mouthwash specifically for dry mouth.

www.hootbio.com/waterpik

Everyone living with Sjogrens has had a different beginning to their journey & will likely have a different ending. Comparing yourself to someone else will do you no favors. Focus on your journey, and what you need to best manage your symptoms

I'm here to help. Please leave a comment or reach out with any questions. Sharing is caring, so please follow and share with anyone that may benefit. Til next time. 🪷

#oralhealth #Sjogrens #flinttsmints #waterpik

#dentist #oralcare #teeth

ABLEISM

 

Scrolling through my IG feed the other day, I came across a reel showcasing a mother and her precious baby girl. They were quite the adorable duo, giggling, singing and playing with pure joy. 

What made this mommy moment stand out  was that she (@the.annegirl) lives with disabilities, and was courageously showing how she manages her seizures when alone with her babygirl.  I was so impressed with her willingness to share & educate but even more how much time she has taken to prepare/plan for these episodes, to keep she and her baby safe. 

A quick glance at the comments and although overwhelming positive, I was disappointed, disgusted and annoyed with those keyboard ninjas, that had unkind words only because of her disability. As I stated on her feed, Ableism is very much alive and well. Too often healthier, able bodied individuals operate with an enormous sense of entitlement. For those that may not understand, Ableism is a form of discrimination. By definition it is social prejudice & discrimination against people with disabilities.

It sickens me that people seem to forget that living with disabilities does NOT define who you are.  For those of us that weren't born with a disability, -mine appeared later in life- we had a full life before the disease or the injury reared it's head.

We had careers, enjoyed an array of activities, traveled and some had children------ just like anyone else. What makes us different is that we live in bodies that for whatever reason, no longer support us in the manner it once did. Some disabilities can be seen and other chronic conditions are pretty much invisible, either way we press on and strive to maintain whatever semblance of our "normal" lives as possible.

Chronic conditions are exhausting in every way--mentally,  physically, and emotionally. Trust, an overall healthy person could not tolerate a fraction of the pain most people with chronic illness endure on a daily basis. Everyday is a surprise. A new manifestation of one of the conditions you live with. While we ( warriors) adapt, adjust and rely on our village for support, it would be refreshing if we didn't have to exert unnecessary energy defending our decisions or explaining things such as why we're in a disabled parking spot when we can walk. 

The fight against Ableism is constant and tiresome. Sometimes it's blatant and in your face, other times it's those micro aggressions that make you want to scream!!  My faith in Christ grounds me and I know God will never give me more than I can bear. I trust that even this disease....all things work together for good. Sadly, I don't expect the ignorance and insensitivity towards the disabled community  to disappear any time soon. 

My sincere hope is that through my writing and hopefully people sharing such, living with purpose and showing up everyday --in spite of it all-- I hope will being awareness , education, empathy and maybe a return to common sense. Our bodies may not outwardly look quite like your average healthy body-- but whether we're walking with a cane, rolling with a rollator, or swerving in a mobility scooter...we're here. We're competent. We're complete and we're not going anywhere. Til next time. N. 🪷

#disability #discrimination #mobility #disabled #ableism

Cordless Circulation

The close link between Autoimmune diseases and poor circulation are an almost absolute. As with Sjogren's disease, systemic inflammation can restrict blood flow--depriving the body of vital nutrients, while removing waste. When this process is interrupted, sharp, prickling, electric like pain can occur. If you're not familiar with this manifestation of Sjogren's and other autoimmune diseases, count your blessings. 

Aside from medication, rest and recommended low-impact exercises, there didn't seem that there were too many options that could help improve blood circulation and minimize some pain at the same time. While watching Shop HQ( my new bestie) I saw a pair of cordless compression boots. My heart was racing at the speed of sound!! These are not your mother's corded, can't move beyond go compression boots.

The cordless compression boots from Medic Therapeutics are heavenly. Resembling what those of us in a particular age group called moon shoes, these boots have a padded sole with open toe. Velcro flaps(4) make putting these boots on a breeze. On the side of boot is a panel where you can charge the boots individually just as you would your phone or other electronic device. Two -three hours of charging is all that necessary for  a charge that last fir several days.  Adjustable buttons for heat, massage and compression are easy to see and change settings-- while actually wearing them.

I am in love with this product. They are so very comfortable and if you have steady gait/balance you can absolutely walk around the house while wearing them. For me, seated with elevated feet works like a charm. The massaging motion alongside the warming feature are a winning combination. When blood flow is optimal, our bodies receive the nutrients and oxygen it needs to thrive. Tissue and muscles are supported, swelling and inflammation decrease, the heart doesn't have to work as hard to pump adequately and those searing, sharp pains take a temporary hike.

The abilty to engage in potentially life saving exercises away from judging eyes, is comforting when living with chronic and systemic illnesses.  I can't say enough about this product line. Medic Therapeutics has hit this one out of the ballpark. A perfect 10. You can find these lifesavers at a number of different online retailers, such as www.shophq.com

#Sjogren's #circulation #hearthealth #LiveWellStayHealthy

 

April is Sjogren's Awareness Month

Throughout the month of April, advocates, patients and anyone impacted by this debilitating disease, work to further increase awareness about this disease. Sjogren's was once considered a "syndrome", until continued research proved Sjogren's to be an autoimmune disease with varied manifestations and potentially life threatening complications.

One to four million Americans live with Sjogren's and 9 out of 10 of those are female. Pinpointing why this disease affects women so much more than men is still not known. While it is believed that Sjogren's can develop in the body as early as age 20, most that suffer with this disease don't see noticeable symptoms or the onset of flares until age 40 or later. 

So what is Sjogren's and how on earth do you pronounce it?? The correct pronunciation is SHOW-GRINS. The name comes from the last name of the doctor whose research led to it's discoverey--Dr. Henrik Sjogren. Sjogren's disease is a systemic and chronic autoimmune disease where your immune system attacks it's own cells and tissues. This can result in a variety of manifestations including major organ involvement--such as kidneys and in my case lungs.

The narrative that Sjogren's is dry eyes and dry mouth is inaccurate. Those are indeed symptoms and markers that indicate you may have the disease, as Sjogrens disrupts the exocrine glands BUT be clear--Sjogren's is a debilitating and very dangerous disease.

Throughout the month, there are numerous workshops, seminars and activities to raise awareness of this painful disease. Any and every opportunity to raise awareness and educate people about Sjogrens is great but please remember--this disease doesn't take days off or go on vacation.Sjogren's shows up differently in every body it inhabits. By nature, Sjogren's is tempermental and highly unpredictable. If you have a loved one, colleague or friend living with Sjogren's disease--please show them some grace and compassion, and know everyday is a struggle and they are doing the very best they can. ~Red 

#Sjogren's #awareness #education 

Gray Hair and Autoimmune Disease

 

There's no shortage of commercials and ads geared towards restoring silver locks back to their natural color. The amount of time, money and effort dedicated to keeping hair any color other than gray is disappointing to me personally- yet also laughable, since we all naturally have white hair. Just as we have melanin in our skin, it's the Melanocytes in our hair follicles that give us actual pigment. 

Nonetheless, I've long wondered if chronic illness or autoimmune diseases had any connection to graying hair considering that autoimmune diseases usually cause long periods of persistent pain, i.e. stress. According to the NIH, the answer is a resounding yes. Autoimmune diseases such as Sjogrens means your white blood cells are attacking themselves daily as they cannot differentiate between healthy and unhealthy. 

When our bodies become infected, our immune system releases interferons. Interferons activate other cells and influence gene activity. This means the MITF protein, which is responsible for regulating cellular activity, is not working as it should--and without properly controlled MITF-- hair turns gray. Wow!!

Of course genetics does play a role as to why some gray earlier or later than others, bit this new research confirms the connection between autoimmune disease and the loss of melanin in the hair follicle. While the study doesn't definatively point to specific diseases, researchers can confirm that thyroid conditions, as well as alopecia are two conditions that have a significant impact on hair color or lack thereof.

So, the obvious question is what can you do?? Like most, you can simply prepare to spend a hefty amount of money dying and touching up your roots if wish. Option two is my personal preference, and that to lean in and embrace it. I absolutely love gray hair. It's debonair and has a certain depth to it. Thankfully the narrative surrounding going gray...especially for women is quickly changing--for the better. One scroll on the gram and there are stunning images of silver sisters embracing their gray with pride( as they should). Speaking from personal experience, I can attest to more gray hairs after each really bad flare. 

While I'm not rushing the process, I have no intentions of running away from it either. Each streak has been earned and I intend to embrace every one of them. Til next time. ~Red

#grayhair #health #silversisters

Grapefruit and Prescription medication

 

Grapefruit......a tart citrus fruit loaded with health benefits. Nutrient dense, low-calorie, heart healthy and highly recommended to help prevent insulin resistance in diabetics, so what's the danger?? Prescription medication if you're not careful. 

Grapefruit on it's own is a genuine superstar and one that I used to love eating for breakfast. The danger lies in it's chemical makeup when combined with many prescription medications. The litany of questions I often ask when picking up a prescription, are usually more along the lines of  generic vs name brand, cost and the number of refills. As much medicine as I have to take, I honestly don't remember ever asking if I could eat certain foods--particularly grapefruit. 

For all of the amazing health benefits grapefruit has to offer, it also contains a chemical that inhibits the metabolizing of certain medicines. Grapefruit contains a class of chemicals known as furanocoumarins. These chemicals disrupt the normal function of  CYP's, the enzymes that break down medication in the body.The result of thus combination us two fold 1) An increased level of concentration in the bloodstream 2) Altered drug performance 

Depending on the drug,  mixing grapefruit( grapefruit juice) and certain classes of medication, such as(some) immunosuppressants, statins, allergy and anxiety medications can lead to serious and dangerous health complications. When the concentration levels increased, medications can stay in the bloodstream too long reaching harmful levels. By contrast, mixing grapefruit with prescription medications could also lessen the effectiveness of the drug, causing harm as your body isn't getting enough of what it needs to heal and recover. 

Too much or too little both scenarios spell trouble. It's very easy to forget or overlook something so seemingly simple, but always be sure to confirm with your prescribing physician, which food(s) and/beverages you should avoid while taking prescribed medications. 

#food #medicine #danger #prescriptiondrugs