Medical Research with Antidote

Medical Research is a topic I know I can’t be the only one interested in. Sadly, when you have chronic illnesses like I do, you hope and pray for medical research to be conducted on your conditions. Without medical research, many of us wouldn’t be able to live the lives that we are living. For me and many other Lupus patients, Benlysta (Belimumab) has given us part of our lives back. Without this med I only have a few GOOD DAYS a month, but with it, I have several GOOD WEEKS!!! Lupus isn’t the only condition that benefits from medical research. Any long term illness including, asthma, heart disease, migraines, diabetes, other autoimmune disorders besides Lupus and other conditions like cancer or Alzheimer’s benefit from ongoing research! Benlysta was approved in 2011 after going through many trials and final approval by the FDA. Most recently after trials and research, Benlysta was released in a injectable form that can be given at home which will further imorove peoples’ lives. 
So what exactly is medical research?According to The Nature journal, “Medical research involves research in a wide range of fields, such as biology, chemistry, pharmacology and toxicology with the goal of developing new medicines or medical procedures or improving the application of those already available. It can be viewed as encompassing preclinical research (for example, in cellular systems and animal models) and clinical research (for example, clinical trials).”

Many people struggle to find medical research and clinical trials for their conditions and often have difficulty understanding them due to the complex medical language used. Depending on a person’s condition & location, finding a local trial can be difficult. However, I have recently found and partnered with an AMAZING company, called Antidote. Antidote works to help patients get connected with clinical trials and provides easy to understand descriptions of each trial without all the medical jargon. They have a very easy search function on their website where you search for your condition, provide your location and indicate how far you are willing to travel. The site will then provide a list of open trials for that condition. Currently, there are 69 open trials nation-wide for Lupus alone. Once you put in how far you are willing to travel, the site asks you basic questions to try and connect you with the best trial for you! 

The best part is that this is a free search. There is no cost to search for trials for your condition and if you have multiple issues you can search for multiple trials. If you get accepted into a trial you would only be allowed to do participate in one trial at a time. 

Being part of a trial does seem scary and does have its risks like almost all things medical. Despite this, it is imperative that people participate in this kind of medical research. Without clinical trials, the world of medicine would not advance and treatments would stay the same as they have been for years. If you feel called and there is a trial near you, please at least apply to see if you could benefit from participating. Not everyone who applies for a trial will get accepted, however. I was curious as to how many people would be willing to partipate in research, so I asked a generic question to my Lupus Support Group, “If you had the option to join a clinical trial, would you?” The responses varied. Of the 27 people who responded, 22 stated that they would participate, while the remaining 5 said they would not participate. The biggest reasons reported for not participating in a trial were that it is scary/dangerous, and the amount of time and needles (for IVs or blood draws) involved. 

If you are interested in medical research and write a chronic illness blog and might be interested in partnering with Antidote, please contact me. I have just began a partnership and would love to get the word out and get others involved. I know what you are probably thinking. And the answer is NO! I do not receive any commission or payment of any kind for referring other bloggers or recommending people use the search tool! I am just truly excited that there is a tool like this that exsists and is available to everyone. They may not have your condition listed but they are working on finding more trials for more conditions. I am so excited to share this information with you and as I learn more I will continue to pass along information. If you would, please share this information with people you know or with your communities. We must get the information out about the need for more involvement in medical research so we can advance treatment of chronic conditions!!! If you would like to check out the search tool or the website for my information I will list the website below. You can also find the link on my sidebar within the blog. Soon I will also be adding a page focused on current trials available for conditions I currently have. 
ANTIDOTE WEBSITE: https://www.antidote.me/

LIST OF CONDITIONS: https://www.antidote.me/
Amber 💙
Other References:

https://www.nature.com/subjects/medical-research

The Grass is Always Greener 

You know the saying you’ve heard since you were a kid “The grass is always greener on the other side?” Well, I’ve realized in the past few months that this applies to more than just cows wanting to eat from the other side of the fence. That there really is more to it!! It definitely applies to working in the home vs working outside if the home. It seems like those that get to stay home or work from home want to work outside the home, and those outside the home want to be at home.  It’s a never ending battle. 

Once I graduated with my Nursing degree in 2007 I assumed I would work in some way up until retirement. I thought I might want to go part time at some point when I had babies. But I never thought that at ten years after graduation, at the age of 32,  I would no longer be working at all. Well, not at least outside of the medical field. But it’s happened!!!!!! I am no longer working as a nurse. But as an Indeoendant Distributor for a cosmetic company. Basically an MLM. It does bring in a little money and I am so very grateful to have found something that I can do from home. Heck, I can even do it in my jammies from my bed. However, this is definitely not where I saw my life going ten years ago. 

However, I know that I am not alone in saying it’s totally different when you choose to stay home with babies or your family. Then it is when are forced out of the workforce due to an illness or disability. Since the end of August I have had to stay home due to illness. I lost my job after totaling my car in a accident where it is likely that I had either a seizure or a cardiac event! The accident was just the icing on the cake, so to speak. I had missed more days than any other employer would have allowed. And this company was so gracious to work with me and did everything they could not to let me go but after the accident it was clear it was just what had to be. At first after losing my job it was kind of nice to be home, to not have to get up to an alarm or get dressed up everyday. However, that lasted about two weeks, and then I was bored out of my mind. 

I can’t tell you though the number of times, those of us who are unable to work and have to stay home due to illness or disability, hear how nice it must be to be able to stay home and not have to work.  What people don’t understand is that there is a large population of us who have been forced out of the work force would give ANYTHING to get back to work!!! And it’s not by any means that we don’t HAVE to work. It’s not like we chose to retire and are now happily traveling the world and getting to spend time with family.  Most of us who were forced out of our jobs by our health are doing quite the opposite. We are stuck at home, usually leaving mostly just to attend a multitude of drs appointments, go to the grocery store or maybe church. If we are lucky we might find enough get up and go to go out to lunch or dinner with friends or family. But usually those plans get rescheduled because of how we are feeling!!  So we are NOT living the life. 

I would give anything to go back to work. To be able to go back to working the Cardiovascular Step Down unit wher I worked the majority of the time before I left as a Charge Nurse. This was what I loved. I loved the kind of  patients we worked with, the body system we were working with and really most things about my job!! But then the Lupus monster hit!!! I could no longer physically meet the demands of that job. So it was time to move on to things less physically demanding. Since the Summer of 2012  I have worked several jobs,  but none of them were what I loved. And over the years my health continued to deteriorate to the point where I was calling in more than I was actually working due to migraines and pain and constant illness. So I was no good to any employer or fellow employees at this point due to my Lupus, migraines and adrenal insufficiency!  

What people don’t take into account is the risk for increased rates of depression when people are no longer able to work for whatever reason. Now that person may no longer have an income or a very small one, so that puts a huge stress on the person as well as the family. Due to the loss of job  they may have lost their health insurance. And this is really not an option for those with chronic disabiling diseases. Without insurance we could potentially get stuck with thousands and thousands of dollars of medical bills that you gave no idea how you were going to pay them. Or if they can get government insurance it may be to pricey for them to get!!. There is also the potential for lack of adult face to face conversation and a potential loss of friends all related to the disease and the the job loss. Both of which can also cause or deepen a person’s depression. 

I looked up some statistics on the Buteau of Labor Statistics Page. Per their site, “Adults age 21 to 64 with disabilities had median monthly earnings of $1,961 compared with $2,724 for those with no disability.” And that’s a median number. I know many people who only receive -$500-$1000 a MONTH in social security that they are expected to live off!! I also found this statistic that I found interesting.  “Only 17.9% of persons with a disability were employed.”
According to the U.S. Census Bureau “Nearly 1 in 5 People Have a Disability in the U.S., Census Bureau Reports Report. 
About 56.7 million people — 19 percent of the population — had a disability in 2010, according to a broad definition of disability, with more than half of them reporting the disability was severe, according to a comprehensive report on this population released today by the U.S. Census Bureau.”

Those statistics were not imperative to include but I thought it was a good look at just how many people are disabled in the United States. For me the take away of this blog would be that most people aren’t happy where they are. If they have to work to provide they wish they could be home with their families. While those of us who can’t work would give anything to get back into the workforce! I also want to people to understand that many of us who are disabled don’t want to stay home and not work. We would love to return to the careers we went to college for and loved. Not all people on disability are just living off the system and not working because they can. Personally, I WOULD GIVE ANYTHING TO BE ABLE TO WORK AGAIN outside the home. 

I hope this gave you some insight!

Amber  
References:

https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html

https://www.bls.gov/news.release/disabl.nr0.htm

Epilepsy, The System Shocker

What is the first thing you think of when you hear the word “Epilepsy?” What about “Seizure?” Normally, people think of someone on the floor convulsing. What they do not realize is that there are over 40 different types of seizures; some of these you will never know the person is having that seizure unless you know exactly what to look for. Unfortunately, that person will know and feel the after affects for sometimes and hour or days to come even with medicine.

Simply put, a seizure is a disruption in the brains electrical activity. Think of the electrical current being sent to a lightbulb, when that lightbulb flickers or goes out for a few seconds, that is a seizure. Epilepsy, is a recurring disruption of the electrical currents between various lobes.

Roughly 65 Million people globally have Epilepsy with 3.4 Million of those being Americans. There are approximately 150,000 new cases diagnosed in the United States each year. What is perhaps the most disheartening, is that 1/3 of all of those with Epilepsy, do not have a controlled case because there is not a current therapy that is effective for them. That is 21.45 Million people that live with uncontrolled seizures. Common triggers for seizures include lack of sleep, hormone changes, flashing lights, stress, particular foods, certain medications, alcohol or drug use, missed doses of medication, and low blood sugar.

Living with epilepsy is not easy. There is always a sense that you are walking on a glass bridge that has a thousand cracks, and a ravine of jagged rocks is there waiting to catch you. When my seizures returned, there was a new level of violence to them that I had not experienced. Previously, I had polite petit mal seizures. I just stared into space for a few seconds. This time, I would convulse for thirty minutes, as EMT’s and Doctor’s would struggle to get the lifesaving medicine into me. I would then wake up and be exhausted, have no concept of hours or days before having lost memory, and then the bruises from the actual seizure itself. I have never been beaten by another human being; however, when the police ask you if the domestic violence officer needs to come to you home, and your only choice is to show the very worried officer your hospital discharge papers you start to realize just how strange this new world is.

There is a fear of how people see you. You get nervous going out because unless you are with a “safe” person, what if something happens and your friend does not know how to handle the situation? Epilepsy is yes a physical disease; however, it is also a psychological warrior in that you have to plan for it.

When newly diagnosed with epilepsy, the looks of fear, anxiety, helplessness, what do I do if, did she do something to deserve this, is she demon possessed (yes in 2017 that is still asked), I will just stay over here because it is better not to get to close, and a thousand other glimmers that float across people’s face become a burden and a stress to bare. As the patient, you already struggle with understanding how your own life is changing. First, you are trying to understand what your own body just did to you. Second, you have the emotional fallout and instability. You actually go through the 5 stages of grief. Third, you then try and understand your seizures, triggers, if you have a tell or aura, you keep that log and try and find anything or everything that helps. Fourth and finally, you begin to step out into the world and realize that no matter what somehow you will overcome this.

The medication cocktail search may be easy or it may be hard, the sense of humor that will develop will be disturbing to those on the outside, I mean hey how many people get to have a lightning storm in the brain?

Sources:
Epilepsy Foundation of America
https://www.epilepsy.com/learn/about-epilepsy-basics