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

Unrest – Movie Review

This week I was contacted by Jennifer Brea about a movie she has done about living with ME/CFS. She asked if I would be willing to Screen the movie she had produced and then review it here. After looking into the Project I decided that I would be glad to preview the movie and provide a review of the project for all to read.

Unrest is centered around Jennifer Brea and her fight against Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), most commonly known as Chronic Fatigue Syndrome. She discusses how the condition has affected her life, about diagnosis and did many interviews. She interviewed others who also have the same diagnosis, Doctors who have worked with patients and the condition. As well as talking to her spouse about how she felt she wasn’t the spouse he deserves. This movie is SO relatable, there were so many times I caught myself say “Yes!” or nodding my head in agreement to what was being said. Its the most real and true Production I have ever seen. She shared more of her bad days, unlike other films who only talk about said BAD days. You became very invested in Jennifer and her friends also with CE/MFS. I cried with them when things didn’t go their way and cheered when they had good days. I recommend this movie to all with chronic illness, and their families. I also feel like it should be shown in nursing schools and Med School so those who will be providing care will actually know what this condition is and not treat those who have it like a person with a mental illness. I feel like everyone could learn something from this movies.

I am waiting to hear from Jennifer Brea as to when this will be out for all to see and also as to if I can do a little interview of her for you all. I will let you know when I know more. But be on the lookout for this in a theater near you. Below are some of the reviews that have been done of the movie. As well as the synopsis of the film written by Jennifer Brea or her team. And Below that is the link to YouTube so you can watch the trailer.

• “Astonishing”– BBC
• “Brilliant” – The Daily Telegraph
• “Riveting…equal parts medical mystery, science lesson, political advocacy primer and even a love story.” — San Francisco Chronicle
• “Remarkably intimate, deeply edifying and a stirring call to action…an existential exploration of the meaning of life.” — LA Times
• ★★★★★ “A sensitive, powerful documentary” that’s “compulsive viewing.” — BritFlicks
• “An intimate essay” that even feels like “a suspenseful thriller” and “packs a significant emotional punch.” — The Spectator
Synopsis:

Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.”

In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.

Until you are able to watch the movie in full here is the trailer that has been released: 

I hope that if you are able to watch this movie that you gain as much from it as I did!!

Amber

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5 Quick Tips to Avoid Illness During Cold and Flu Season

Yes, it may be fall and almost the holiday season. But with those wonderful things also come the bad! Bad for immunocompromised individuals that is. What am I talking about you might ask?!? Cold and Flu season!! For those of us with little to no immune system this can be the worst time of year. As all the germs running rampant make it hard for us to leave the house!! But there are steps we can take to try to prevent getting sick. They may not all be pleasant but if it keeps me out of the hospital I’ll do just about anything.

1. GET A FLU SHOT – The first thing we need to do to prevent the Flu is to get the Flu shot. Now I know not all of us can take the flu shot due to allergies or sensitivities, but those who can should. Some say that the flu shot makes them sick and while that may be true in a few cases, it will not give you the flu. We should also encourage those who we are in close contact with to also get the flu shot. If those we live with and work with don’t get the shot we can still be at risk for getting the Flu.

2. WASH YOUR HANDS- The next best thing we can do to prevent the nasty cold and flu bugs from getting us down is to wash your hands. Wash, wash, wash!!! When should we wash you ask? Well, we should wash our hands after using the bathroom, especially public bathrooms! (Also while I’m on the topic of public bathrooms, you should do your best not to touch the sink knobs or door handle after washing and should use a paper towel to do so!) We should also wash after sneezing or coughing on our hands. As well as after contact with surfaces that others may touch like door knobs, shopping carts etc. If you are unable to use good ole soap and water, use an alcohol based hand sanitizer until you can get to a sink.

3. AVOID CROWDED PUBLIC PLACES- We can also try to avoid going out into public at the peak times. The more people confined into a small space the more likely you will be to get sick. So try to go out first thing in the morning or last thing in the evening!

4. AVOID SICK CONTACTS- We should ask that our friends and family stay away when they are ill. If they know they are sick they should limit contact with those who are immunocompromised! And if they have to be near it is okay to ask them to wear a mask.

5. WEAR A MASK – We can also wear a mask when we go in public. It may not be pleasant or comfortable but it’s another way that we can prevent illness and hospitalization!

Prevention is important for those with low immune systems as well as those who don’t! When it comes down to it sometimes there is no way to prevent illness this time of year. But these five basic tips are quick and easy ways that we can implement to try to prevent contracting an illness. We have to do all that we can to prevent illness because no one else is going to do it for us!! We have to take prevention into our own hands and do all we can to keep ourselves healthy. We all need to do our part to stay healthy!

Gift Guide For The Chronically Ill

Christmas time is upon us and gift buying is always a struggle. Not just for us, but also for those who are buying for us. So I took some time and put together a gift guide for those struggling with chronic illness!!

I’ve chosen everything that is under $75.00, and can all be found either on Amazon or online. I will let you know where each item can be found.

First let’s start with one of my (and my fellow spoonie friends) favorites.

1. The Throw Blanket – Not only is it gorgeous, but it keeps us warm. This specific blanket comes in 24 different colors and is available in Twin and Throw size!

Where can I find it: Amazon.com

Price: $23.99 – $29.99

One of a Spoonies biggest problem at night is not being able to get comfortable. So the next item helps with just that.

2. The U-Shaped Body Pillow – this pillow will provide comfort and support for all parts of your body. (Yes, it also works during pregnancy)

Where can I find it: Amazon.com

Price: $42.95

3. The Heated Throw

Along that same line here is a great option for a heated blanket that does more than keep us warm. It will help tremendously with pain.

This specific Throw is a best seller and Sunbeam is the best selling manufacturer. This model is comes in multiple colors and has a lighted control

Where can I find it: Amazon.com

Price: $34.99

This is another option for a heated blanket. This one pictured is twin sized (however you can find them in queen and king size as well) and is perfect not just for you. This option (in twin size) will also be a hit with your spouse if they don’t want to sleep with a heated blanket. It features a foot control and an automatic 10 hour shut off.

Where can I find it: Amazon.com

Price: $52- $62

While we are on the topic of heat. Let’s take a look at a heating pad.

4. The heating pad- these are good when you have an area that needs heat but you don’t want to lay under a full sized heated throw.

Where can I find it: Amazon.com

Price: $16.37

There is nothing better than a soft and comfy robe to wear around the house. Which brings us to our next gift idea

5. Robe – This is a microfiber fleece hotel spa robe with pockets. This particular robe is One Size Fits All and comes in 10 different colors.

Where can I find it: Amazon.com

Price: $34.89

Another great idea for Spoonies is the perfect pair of lounge/ sweat pants/leggings. It’s important that nothing is too tight, because depending on the condition tight clothes can make things worse.

Leggings are a big hit among most Spoonies bc they are soft and feel good on the skin.

6. Leggings – these come in 10 color options and have a 4.5 start rating.

Where can I find it: Kohl’s/Kohl’s.com

Price: $14.99 (currently on sale from original price of $20.00)

Women’s Plus Size Leggings also at Kohl’s on sale for $17.99, regular Price $24.00

Spoonies in general deal with being cold and having cold extremities. So the next item is perfect for that

7. Warm Socks- This specific item is a 5 pack of thick knit wool. They come in 6 different color options.

Where can I find it: Amazon.com

Price: $12.99

8. Maybe my most favorite item on the list. Bath bombs!! These particular Bath bombs come in packages of six, are Vegan and made with essential oils.

Where can I find it: Amazon.com

Price: $17.95

9. Foot Spa – This vibrating foot spa comes with foot controls, so there is no bending over to turn it on and off. And comes with one attachment. And it’s just what your feet nee after a long day!! These are also great to use if you are doing home pedicures with the kids or young adult in your life.

Where can I find it: Amazon.com, Walmart

Price: $17.69

The next item goes right along with the previous two. But this not only feels good but it helps to ease sore muscles.

10. It may not be a fun gift but it’s practical. Epsom Salt makes taking a bath when you are in pain so much more pleasant. Always a good gift for a spoonie.

Where can i find it: Amazon.com, Walmart it most pharmacies.

Price: $15.99 (However, prices will vary depending on kind, size of bag and where it is purchased.)

Now that we’ve covered the big items, let’s talk about a few stocking stuffers.

11. Adult Coloring Book- Who doesn’t love to color and it’s been proven that it’s a good way to relieve stress!!

Where can I find it: Barnes & Noble, Walmart, Amazon, most book stores

Price: $8.99

If you are buying an Adult Coloring Book then the next item is a MUST HAVE!!

12. Markers!! You have to have a way to color your book and these dual tip brush pens are AMAZING!!

Where can I find them: Amazon, Walmart, Art Stores, any where markers are sold.

Price: $12.99

**the set pictured is found on Amazon**

13. Mani Moo Hair Ties- These hair ties are no crease and no pain. So if you have someone in your Life with headaches these are a MUST have!!

Where can I find it: Amazon.com

Price: 10.00/6 Hair Ties

14. Gift Cards: Gift cards are always a good stocking stuffer. Whether they are to A store or a restaurant, they will give your friend or family a good reason to get out of the house!!

Where can I find it: Any store, restaurant or online shop!

Price: Varies

When you have a lot of pain in your hands and use your phone a lot this next item is a MUST!

15. Popsockets- Not only do these make it easier to hold your phone when your hands hurt. They also make great stocking stuffer ideas. They come in all kinds of designs and you even have the option to create your own!!

Where can I find it: Popsocket.com, Amazon, and many other retailers.

Price: $10-20

16. The Eye/Sleep mask- This will be a great gift for anyone with migraines or who just have problems sleeping. I provided two price options for this gift.

1. The Spa Collection Mask is a great gift bc it allows for heat or cold to be an option. It also comes in two colors.

Where can I find it: Bed Bath and Beyond

Price: 24.99

1. This option is just the plain basic option but completes the same task of keeping the light out of ones eyes. I find it helpful to keep one like this in my hospital bag in case I lose it.

Where can i Find it: Bed Bath and Beyond

Price: $6.99

I hope this gift guide provides you with some ideas for your Chronically Ill friends or family. May you all have a Merry Christmas and happy shopping!!

Amber

10 Ways to Survive The Holidays With Lupus

We’ve made it through Halloween and it’s almost the holiday season again. For most it’s a joyful time, but for those with chronic illnesses it can be quite the opposite. It can become a time of worry and planning. Planning how to make it through all the parties, the cooking, the crowds etc. A time of worry about the germs we will be exposed to, if we will get sick, when we can squeeze in naps, and how far in advance we can prepare dishes so we don’t have to do marathon cooking! The holidays are just plain exhausting, and for many don’t carry the excitement that they once did.
So what can the chronically ill do to make it through the holiday? It depends on the person and what illness they deal with. That being said the following is a general list of things we can do to get through this season.
1. PLAN AHEAD- One of the best things we can do to get through this season is plan ahead. Know what you have when and plan accordingly. If you know you have events several days in a row or an event that is long you can plan the remainder of your week so you can rest. You can move your schedule around so you have plenty of down time so you have the energy to get through your events.
2. TRY TO STAY AWAY FROM THOSE WHO ARE ILL- I know this is much easier said than done. But it is essential to getting through the holidays without getting sick. It never fails We go out shopping or to a party and come home sick. So don’t be afraid to wear a mask when leaving the house. I know you feel like you stand out and you get stared out. But really it’s for Your Health!!
3. REST, REST, REST- I touched on this above but to make it through the holidays rest is going to be essential. Between the cooking and the shopping and the parties if we don’t rest we won’t make it through the season unscathed and somewhat healthy!!
4. DONT FEEL LIKE YOU HAVE TO ATTEND EVERY EVENT YOU ARE INVITED TO- It never fails that during the Holidays there will be tons of events and people who want to get together. And that’s great and grand. But not at all plausible. So pick and chose the most important ones and decline the others. People will understand!
5. IF YOU ARE HOSTING A PARTY OR DINNER, DELEGATE! – There is absolutely nothing wrong with asking others to bring side dishes or dessert. Ask someone to come over before to help you, and start the party early!! Also try and plan dishes that can be made ahead of time and refrigerated or placed in the freezer till right before the event! Don’t be afraid to ask others for help to clean up!!! You don’t have to be the Lone Ranger! It’s okay to ask for help!
6. DO SOME OR ALL OF YOUR SHOPPING ONLINE- In order to conserve energy and preserve your Health do your shopping online. There really aren’t many things you can’t buy online. And most places will even do your gift wrapping for you!! Online shopping is the perfect way to shop for those of us chronically ill. If you are worried about additional costs, the prices are the same as in store, and with a few Google searches you can normally find an additional online coupon code to take a percentage off.
7. PLAN THE BEST TIMES IN THE STORES!- If you are a person that prefers to shop in the store or have an item that is only found in stores, that’s totally understandable. That being said try to pick the best times to be in the stores. Meaning when the crowds aren’t as heavy and the parking lots aren’t full. These times are generally first thing in the morning when the stores open or right before they close. If you have to be in the stores try to get to it before the huge crowds appear in the weeks immediately leading up to the holiday. Don’t be that person fighting the crowd on Christmas Eve.
8. STAND UP FOR YOURSELF/DONT FEEL BULLIED- Plain and simple you just can’t do it all. There is no way that you will be able to attend every party or gathering, do the cooking, the shopping etc. so stand up for you and what’s right for your body. And don’t let anyone bully you into changing your mind when you know it’s wrong. They don’t have to live with the consequences of pushing yourself too far.  So do what you know is right and feels right for you!!
9. BE WISE IN YOUR CHOICES OF FOOD AND DRINK! The holidays are known for being a time in indulge, or over indulge for many on all the great foods we don’t have all year. It is also time to be merry and have an adult beverage to celebrate. That being said if you know eating certain foods or drinks are going to make you sick be careful. No matter how good it may look and smell it’s not worth the result they may cause.
10. Last but definitely not least. FIND TIME TO TREAT AND PAMPER YOURSELF- I know the Holidays are meant to be a time of giving to others, but you need a treat now and then too. The stress of the Holidays and others attitudes can really bring a person down. So take sometime in the coming weeks to do something for you once a week. Whether that’s soaking in a hot bath, or getting a massage, or something a simple as curling up for the evening to watch a favorite Holiday movie. DO IT!! You’ll thank me later.
These are just 10 simple ways to make this time of year a little easier on the Chronically Ill. These are things we all may struggle with but we need to really focus on during the Holidays to help us make it through as healthy as possible. No one wants to be down and out while everyone else is celebrating. Personally I love a good hot bath with a good bath bomb. Or reading a good book or watching a movie and just relaxing with my heated blanket!!
May you all have a Happy Holiday Season and hopefully you will find these tips helpful.
Happy Holidays!
Amber

PRODUCT REVIEW!!!!

Makeup is much fun and I love trying products and seeing what options are out there!!!! I decided to try some Tarte products just to see how they compared to the Senegence products I sell!!! I caught the highlighter and bronzer on sale and can I just say WOW!!! I got both the Highlighter and Bronzer both for $10.  I am in love with this highlighter (Its called exposed highlight)!!! It’s so beautiful and so pigmented.  I’ll be honest I got a little too much, if that is possible, because a little bit goes a LONG way!  The bronzer is great too, and it’s called Hotel Heiress!  It’s just a little too dark for me. Being so pale I need a bronzer that isn’t real dark. This would be a great color for someone with a darker complexion for sure. However, for me it’s a little much.  I’ll be honest it could very well also be that I’m just not that great at blending. Since I haven’t been contouring and using bronzer for very long.  This countouring business is rather new to me. And part of the reason I like to try out other products!!  Will I continue to use the Tarte products? Yes, the Highlighter for sure and I’m still on the fence as to whether I’ll use the Bronzer very often! If and when I do I’ll just have to keep in mind how pigmented this product is and make sure to really blend it in.  I definitely don’t want to walk around looking like have a dirty face.   But I will definitely continue to use the highlighter. It so pretty and was such a great deal for the price. I would highly recommend both products for anyone looking for a great deal on a great highlighter!!

Below you find pictures of the products and of my face the day I used these products to do my makeup.

h Tarte Highlighter
Tarte Highlighter – Exposed Highlight
Tarte Bronzer- called hotel heiress
Tarte Bronzer- called hotel heiress
Picture showing my face after using tarte products
Picture showing my face after using tarte products

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

Friendship and Chronic Illness 

It’s true once you’re diagnosed with a chronic illness or a multitude of chronic illnesses your life changes. Not just simply Your Health either.  Your social changes dramatically.  It seems like your friends start dropping like flies. Some can’t stand the sight or the thought of you being chronically ill. While others can’t be bothered with your “flakiness,” and don’t understand why you can’t make plans in advance or why you will cancel at the last minute.  But with a chronic illness those things are just part of it. I may feel great today and the idea of a concert or a night out in three weeks sounds fantastic, but there is no way for me to know how I will feel that day!  And it’s not that I am being flaky! I just don’t know what my crazy body will do!  

Over the years since diagnosis I, like many just like me, have lost friends. Not all at once. But one by one. People I considered my best friends or thought I would be life long friends with just walked away for reasons unknown or because they couldn’t handle what’s was going on in my life. I get it. It’s hard to see someone change so much and have no control of what their body will do next.  The hardest part of all that for me is that these were the people I neded the most. The people who I leaned on when times were tough. 

I decided to take a survey of a support group on Facebook. I asked them how many of them still have more than three friends from the years pre-diagnosis. Of the 13 who responded only TWO said that this was still the case. The other 11 stated  that they no longer have have three or more friends prior to diagnosis. And the following comments were left:

-It’s true though, it becomes so hard. Although I’ve learned it isn’t all to do with the Lupus anymore. Now I’m *that* friend that is busy every day and every weekend and can’t find time to eat lunch with friends. 
-My husband is my best friend, and literally my only close friend. I tend to lose touch with friends because I’m “flaky” when it comes to plans thanks to Lupus. We don’t really fight, just people tend to stop making plans that will likely fall through.
I don’t know what I would do without my friends, people who have known me since college, we’re talking 30 years. They’ve been with me through everything and now this.
-I have 2 very close friends and some acquaintances. I generally am with my family only and only 1 of my 2 friends. I cannot make plans that are long term because I guarantee that I will be there. My body does not afford me that luxury. I have lost friends due to this. It is difficult and can be lonely. I am so thankful for my family otherwise I would be alone a great deal. I cannot drive anymore so that is further isolating. Chronic diseases have taken a great deal of my social life since I can’t drive and make long-term plans and often cancel plans that I have made. I have multiple autoimmune disorders as do many of us and this makes it even more difficult.
-My really close friends are my husband, my sister in law and a lady that I met on FB after I was diagnosed… I don’t have any friends that I am still close to from before I was diagnosed, because they couldn’t handle my being sick all the time… 😔                                                                           -My closest friends have came after my diagnosis. People that I thought were my best friends before lupus have turned out not to be suck great friends. I have a few that I still talk too, but even with them I feel super guilty when I either won’t make plans or have to cancel 🙁

I do consider myself lucky however as I do have a couple of really awesome friends here locally who are so good to me. They come and visit me in hospital, they check in on me routinely.  And even spend their time taking me to drs appointments, Infusion’s, and spending hours in the ER with me!  I can’t thank them enough. However, some of my best friends are people who I’ve met through my support group!! Not only are they great people but they totally understand what I am going through and don’t make me feel bad for it!  I may never get the chance to meet them in person but I will be forever grateful for their friendship. 

So I guess the takeaway in this is that sadly most people don’t understand chronic illness or don’t want to take the time to. People also will often walk away when things get tough. It seems it is just human nature. Not to generalize but I’ve seen it happen too many times as a nurse. People get sick and their friends and family don’t know how to deal with it. So for them it’s easier to just walk away then it is to deal. I wish it wasn’t that way but it just seems to be that way. I hope for you this is not something you experience. But if it is know you are not alone. And there are a ton of support groups where you can not only find support but friendship in those who understand you and your Life.