Tag Archives for Awareness

Is it so hard to be nice?

As I sit and review my week, I am astounded by it all. So much has happened this week both personally and in the world.  I do not care to open up a can of worms, so I will start and end with this… We, as people are all in this together. I am unsure where or when, but somewhere along the way we have lost sight of that. This weekend I sat and looked at the world around me and was saddened by the anger, hostility, and all around carelessness out there. Walking by people in need, not stopping to acknowledge a greeting. Look up from your phones people, stop and look around you. Say hello to your fellow man.

Is it really so hard to be nice?

When did we as a society lose grip with the world around us? When did we lose compassion for our fellow man and neighbor?

Never the less it was a fresh reminder to myself that, WE… We the people are all on this beautiful planet together, why not make it great? I hope I succeed in instilling this in my son, each and every day!

XOXO,

Undefeated Me

Brittle Asthma

There is Asthma and then there is:

Defined:

brittle asthma

A rare form of ASTHMA affecting mainly females and featuring sudden, very severe, often life-threatening attacks. Those affected have a mild degree of immune deficiency, with poorly-controlled asthma in spite of substantial doses of inhaled steroids and wide diurnal swings in their peak flow meter readings. The term is also applied to people whose asthma is normally well controlled but who, nevertheless, suffer occasional sudden severe attacks. Brittle Asthma. (n.d.) Collins Dictionary of Medicine. (2004, 2005). Retrieved June 13 2016 from http://medical-dictionary.thefreedictionary.com/brittle+asthma 

Asthma Disease

 

There is nothing more we take for granted than breathing. Hell even I take it for granted, that is until I can’t. Let me paint you a picture, a very real picture. It often starts with coughing or some form of chest tightness. Unfortunately, it never stays that simple for long. Within minutes the chest tightness goes from 0-100. It was a normal Thursday, you know get up, get ready, get little man ready, rush out the door, get little man to day care… But this Thursday was different. 4:28am brought with it a dream that I was drowning, shortly after that I was up gasping for air and attached to my home nebulizer. Crazy how the body works.

It never ceases to amaze me the strength within.  Instead of going to work I found myself in the parking lot of the ER. I thought it would be an easy visit and for all outsiders it was. Simply because I refused to be admitted, yes you have to stick up for what you want or need. Unfortunately, I have not bounced back as quickly as I had hoped. Four day’s later and I am still struggling. Something as simple as putting my clothes on has me breathing like a 90 year old chain smoker. Getting in my car this morning had me sitting and utilizing my rescue inhaler. There is nothing like feeling like you are breathing through a straw. Ever try it?

Some day’s… Day’s like the last four have me mad… Mad at my body, mad about these diseases that take over. No matter how hard I fight, try being healthy, eating healthy, taking vitamins, attending my appointments, sometimes I feel like I lose anyway. Something as simple as not keeping up with my little guy shatters a piece of me. I will never stop fighting, but damn it if I don’t come close some day’s to just saying FUCK IT! I can’t tell you how many day’s I come so very close to staying in bed. 🙂 Some how I crawl out and push forward, but it’s a close call.

Keep fighting my friends… Keep getting out of bed… I am there with you!

XOXO,

Undefeated Diva.

Day’s Like Today

Being able to walk pain-free is a blessing. Being able to walk without showing the pain is a skill.

Kylie McPherson

 

The pain can be excruciating, mood altering, and downright unbearable. Day’s like today, I get it. I get how someone is pushed to the brink. I get how someone normally so sane and logical can be pushed far beyond their limits and be anything but. Day’s like today, there are only minutes. I count the day in minutes. I made it through another 30 minutes without going home or without giving up. At the end of the day I am proud of myself, but to get there is no easy feat.

Life has been an interesting ride as of late. Diagnosed with steroid induced diabetes a couple of weeks back, I have been fending off sugar drops and rises like the most seasoned tennis player. Add to this insomnia and pure exhaustion, I have a pretty good idea of what induced this onslaught of body pain. None of that makes it any easier. Opening my eyes this morning the pain I felt, felt as though I was in a car accident. The exhaustion I felt, felt as though I had taken some form of sedative. Neither of which actually happened. Like us chronic illness warriors always seem to do, I pulled myself together as much as humanly possible and off to work.

One that does not live with a chronic illness may not understand what it takes. To walk to the copier, to type an email, to even sit for more than a few moments. It is all excruciating. Better yet, to wear clothing that is not loose is a mission. Day’s like today, I am proud of my chronic illness sisters and brothers on a different level. Day’s like today take more skill and determination than normal days. Unfortunately day’s like today often outweigh the “normal”.

So my fellow sisters and brothers on days like today and every day I am with you. I stand strong for you. Above all I wish we were all together to hug and hold one another. Because let’s be honest on days like today what I really need is a hug.

 

XOXO,

Undefeated Diva…

Hydroxychloroquine/ Plaquenil Update!

Article below derived from Lupus Foundation of America’s Blog.

http://www.lupus.org/blog/entry/hydroxychloroquine-shortage-update-october-2015

Oct. 05, 2015

Hydroxychloroquine Update – October 2015

by Sarah Stothers, RN, BS, Lupus Foundation of America Health Educator

Recently, there’s been growing concern over generic drug price increases in the news and on social media. We at the Lupus Foundation of America have felt and been enveloped in this wave of concern. Our organization has been tracking the cost and availability of hydroxychloroquine (Plaquenil®) since June 2014. Initially, there were widespread reports of shortages and difficulty accessing the drug, but now the primary issue is the spike in price.

The Lupus Foundation of America is aware that many of our constituents are unable to afford the high cost of the generic form of the drug, hydroxychloroquine. We are concerned that constituents may stop taking the drug or ration the drug without their doctor’s knowledge. This is can be very dangerous.

It is extremely important that lupus patients take hydroxychloroquine (Plaquenil®) as prescribed. Medication adherence prevents disease flares and other complications.

“Hydroxychloroquine is the mainstay of lupus therapy,” according to Michelle Petri, MD, MPH. “It prevents half of lupus flares, reduces renal and CNS lupus, reduces blood clots in half, reduces future seizures, diabetes and LDL cholesterol, and improves survival. I call it ‘lupus health insurance.’”

Currently, there is one brand name drug manufacturer producing Plaquenil® and four generic drug manufacturers that are producing hydroxychloroquine.  All four generic drug manufacturers are no longer reporting a shortage and are meeting demand.  However, we have had several reports from people who are unable to pay the high cost of the drug. As a result, some individuals are no longer taking it or rationing their medication. We urge all people with lupus to speak with their physician if they are having difficulty accessing the drug.

Here are some actions people with lupus can take to obtain the drug at a more affordable price:

  1. Speak to the prescribing physician about possibly finding a lower-cost alternative treatment option.
  2. File an appeal with your insurance company if the drug has increased in price from last year’s plan. This usually has to do with moving the drug up a tier in the formularies. The insurance company may agree to move the drug back down to its previous plan year’s tier, which can drop the cost. You can also speak to your insurance company to see if switching to a different plan is possible.
  3. Compare prices. Some people have noted that the brand name drug, Plaquenil®, is cheaper than the generic form of the drug, hydroxychloroquine, with their insurance. In addition, constituents can compare the prices at various retail pharmacies to find their drug at a lower cost. There are a few websites, like GoodRx, that can assist with this.
  4. A few websites with resources may also be of assistance:

The Lupus Foundation of America is sharing this information because we want to ensure that our constituents can access and afford the medications that they need. We are in the process of contacting the generic manufacturers that produce hydroxychloroquine to better understand why there was a shortage and now a significant price increase. Our Advocacy and Government Relations department is pursuing several avenues to address the problem.

We believe it is important for us to represent the lupus community and ensure that everyone understands why the prices of their drugs have increased so dramatically. If you have questions or need any information, please contact our health educators through this form, or by calling 1-800-558-0121

Best Lupus Blogs of 2015!

I am humbled to announce that Undefeateddiva.com has made healthine.com list for Best Lupus Blogs for the second year in a row.

When I initially started writing I did it to help people to not feel alone in their journey. I quickly realized I wanted to not only help but INSPIRE. I have had the most beautiful journey since. Thank you to healthline.com for seeing this and helping my vision come true by giving me a bigger platform to reach.

Check out the list here Best Lupus Blogs 2015

With love and humility,

Undefeated Diva

  

Spotlight on Lupus Chick.com

Last week LupusChick.com reached out to me about the possibility of doing a spotlight interview. With a beaming warrior heart, I am happy to share my spotlight interview!
If you have a moment, please go on over and check it out!
If you have Facebook, please take a moment and head over and like their page.
Thank you to Lupus Chick for reaching out to a fellow Lupus Warrior and showing support. I could not be more excited to spread love and awareness.
Happy Thursday my people!
Undefeated Diva!

Keep your head up…

Never bend your head. Always hold it high. Look the world straight in the eye.

Helen Keller

It is not always easy to hold your head up in the middle of a storm For many reasons it’s easier to look down. The only reason I look down is because it is the path of least resistance. When you are in the center of a storm, the last thing you want to do is answer questions. To answer questions or cater to anyone else’s emotions, do they not see you are in need of your own TLC? So to me it has always been easier to keep trucking. Often times people take not holding one’s head up as a sign of an insecurity. I often wonder if these people ever stop to think, maybe we just don’t want to talk to you it has nothing to do with insecurities. I quite frankly am very secure in who I am. Keeping my head low has nothing to do with who I am or how I feel about myself.

SO, on with today’s lesson. I spoke to someone I haven’t seen since I was around 7 years old. He was a good friend of the family and he told me today that whatever I do to keep my head up. You would think I had never hear this before, for heaven sakes I give this advice all of the time. Today, it was a little different. Today it hit me differently. I was hearing this message from someone I had not seen in over 20 years but someone that I considered family regardless of the distance. He told me ” Life is going to throw you things and with each passing decade it will throw you more difficulties, but it is up to you to hold your head up through the storm”. It may not sound as profound as it was but it was one of those moments where I took stock of everything around me for fear of forgetting that moment. Maybe it was profound because it was advice not given to me by just anyone. Maybe it was profound because it wasn’t someone just shooting from the hip and giving me advice that didn’t know me from a hole in the wall. Either way it was profound.

In that moment I took stock. I realized I have been in serious self preservation mode for nearly 6 months and probably longer. My current woes are no more serious or important than the next person. Self preservation is not bad, but when you allow self preservation to be all you live well that is no longer healthy. So today I looked up for the first time. I realized I was not looking people in the eye’s any more, today I did. I realized that although I am in the middle of what is one of the toughest years of my life, that I need to look up and hold my head high. Realistically, how else would I see the beauty ahead?

Everyone remember:

Happiness can be found, even in the darkest of times, if only one remembers to turn on the light! 

Albus Dumbledore

XOXO

Undefeated Diva