Dating and Chronic Illness

Finding love in this world is hard. And most people out there will have had at least a few failed dates and a couple failed relationships before they find their true match. Those first few months of a new relationship are so much fun, before the “newness” wears off. You are likely spending a lot of time together and having fun just being together but also learning about one another. When you are living with a chronic illness dating is just more complicated. It’s not something we chose to make more complicated, it’s just the way it is. Just because we are sick doesn’t mean that we deserve love any less than anyone less, but there are some things people need to know about dating someone with a chronic illness.

We have a hard time knowing when let you in.

– When we are in a new relationship it is very hard for us to know how and when to tell you about our health. We never want you to feel like we hid things from you. But we also don’t want to scare you off from the get go. We want you to have a chance to get to know us for who we are before we bring up our health. If we tell people to early in a relationship usually it scares people off, because it’s a LOT and they don’t want to take all that on. But if we wait to long, then the other person feels like we weren’t honest and have been hiding something from them. Honestly, it’s so hard to know when the right time is. For us it’s just an everyday part of our life. But for someone else it’s a BIG deal. There really is no right or wrong answer. It really is a personal decision.

We aren’t lying, we just may not always be forthcoming about how we feel.

We get asked what seems like a million times a day how we are feeling and we don’t always want to say how awful we feel because we don’t want the looks of pity that follow. We know it’s not intended to make us feel bad but sometimes it’s just easier to say that we are okay, or fine, than it is to say how we are really feeling. It is never an intentional lie, it just a mode of protection.

Don’t be offended if we ask for a rain check more than once

– One aspect of living with a chronic Illness is dealing with getting worn out quickly and usually at the most inopportune times. Just like everyone else, we love having fun, we just often have less energy and get tired much quicker than most. There will be days when we feel like we can do all the things. But those days are usually followed by a day, or several days, where we won’t be able to get out of bed. We need you to understand that this is not us being lazy, that this is us simply taking care of our bodies. Due to the fact that our bodies require more rest and self care than others. So please remember if we cancel plans, please don’t take it personally. Chances are we would much rather be spending time with you than resting. And if I cancel because I don’t feel like going out, doesn’t mean I’m not up to a movie night in.

Take time to research our health conditions

– When you are dating someone who is chronically ill, it would mean so much if you would take the time to research what is going on with our health. In most cases we are an open book and are happy to answer any questions that you might have regarding our health. Simply because this means you do really care and that you want to put time into understanding our health and what may happen.

We have a lot on our plates

– Just because we may not work the typical job like most does not mean that we don’t still have a LOT going on. Many of us who have chronic illnesses have had to start working from home, have changed to a modified work schedule or are unable to work at all. No matter how we work our health is our full time job. It may seem like we have a lot of free time on our hands but it’s really quite the opposite. Most of us have certain routines that we have to follow daily or weekly for our health. That routine may be taking our medications on time, getting week lab work, or going to the abundant number of doctors appointments we have. Having a set routine does not mean we won’t have time for you. It just means we have a little less flexibility than others.

We feel really guilty, a LOT

– One of the worst parts of living with some kind of chronic illness is the feeling of guilt we deal with. In most cases we didn’t do anything to cause our conditions, and we know it’s not our fault that we are sick but that doesn’t mean we don’t feel guilty about our illness. We care about you so much that we don’t ever want you to have to live with our illness. We feel guilty about the fact that you have gotten a “broken” significant other.

There are so very many reasons why dating someone with a chronic illness is more complicated. That being said there are just as many more reason why it is so worth it. In general people with a chronic condition appreciate life more, love harder and fight harder for things they really want! Because of our health issues we will be there to stand by those in our lives who stood by us. And we will be there with you to fight the good fight because our health has made us to be a warrior at heart. So please don’t give up on us just because we have a chronic illness. Most of us would not give up on you that quickly if the tables were turned so please give us the same courtesy.

With Love,

Amber

Dear Chronic Illness – Book Review

Over the years I’ve been told by many people that writing a letter is a good way to deal with big changes in your life. For instance writing a letter to your ex after a divorce, or to a loved one who has died. Or even to your body or disease after you have been given a life changing diagnosis. Pippa Stacey did just that. She complied a book of letters authored by different individuals who penned letters to the disease they suffer from.

Each author wrote a letter to their condition. Some expressed anger and told their condition how upset or sad they were at the things they took from them. Some talked about the things they missed doing that they can no longer do due to their health. While other were wrote about the what they have learned about themselves since they have been sick. The books authors had a very wide variety of conditions as well as a wide variety of thoughts, feelings & experiences living with chronic illness.

Pippa put together a great group of authors each who live with a wide variety of conditions. While there were conditions repeated no two letters were the same.

I truly enjoyed reading each authors letter and love the concept of the book.

There were several authors that I really related to and even marked “YES!” in the margin next to their letter. But one author said something that really resonated with me. Merete Graham said “You’ve taught me that seeing your life crumble apart between your hands is an opportunity to find your inner light and to follow it. To rise up.” This stuck with me. This is what I try to do on a daily basis but Merete put it so eloquently. That’s what we all need to do. We all need to RISE UP! That’s exactly what Pippa Stacey did but compiling this book. She went out on a limb and complied letters from all kinds of people with chronic illness and put them in one book! Truly fantastic. I would love to see more books like this done in the future to continue to raise awareness to the chronic illness community. I loved this compilation and look forward to seeing more work from Pippa in the future.

I highly recommend that you go out and get this book. I think it helps to see what others are going through and how they feel as they are dealing with their chronic illness. It helps to see that their are others out their living with the same or similar conditions deal with similar issues.

With Love.

Amber

Tips To Deal With Anxiety

If you have never woken up from a dead sleep with your heart pounding and your chest tight drenched in sweat from anxiety. Or felt the panic rising out of no where? If you haven’t I am so happy for you. But also if you haven’t you can probably never truly relate to what panic & anxiety is like. That being said, anxiety can strike at any given moment without warning. Or it can be something that that is with you all day everyday. The thing with anxiety is that you never really know. You never know if you are going to wake up panic stricken at 2am or not be able to leave the house because your anxiety level has gone through the roof. But how do you deal? How do you overcome and get through the day?!? It really depends. Everyone with anxiety is going to deal differently. But let’s look at a few different options that have worked for me.

  • Deep Breathing – may sound cheesy but this has become by go-to when I am really anxious. If I can focus on my breathing and get my mind off of what is causing me to be anxious most of the time I can ward off the full blown panic attack. This will also help to lower my heart rate which will also help to lower the panicking feeling I’m fighting. About 6 months ago I started using The Calm App to help deal with anxiety and it has really helped a TON.
  • Take A Time Out – this technique goes right along with the above. If I am in a situation where I feel really anxious and am starting to panic I always start with trying to take some deep breaths but if that doesn’t work I try to take a moment and step away. Take a moment and do something different to get my mind off whatever is causing me to panic. If I am at home when this happens I take a moment and try and do some stretches or a little yoga. If I’m not at home and can I will pop in my ear buds and listen to the first song on my play lost. Basically I do whatever I can to get my mind off the panic causing situation.
    Stay off social media – this is important all the time not just in time of panic. Although usually the opposite is what truly happens. When people need a “break,” from reality they grab their phones and go straight to social media. Doing so may actually be causing more harm than doing good. Licensed Marriage and Family Counselor Rebecca Burton says, “Staying continually plugged in means you are susceptible to the anxiety-provoking events of the day, whether it’s that a good friend is ill or a large-scale disaster is unfolding.” For many social-media can definitely lead to a never ending game of comparing yourself to others in one way or another. So it’s best to just unplug, especially during times of anxiety or depression for that matter, so you can take some time to focus on yourself without the Influence of others.
  • Use of medications when needed – sometimes anti anxiety medications are just necessary. It’s not something you should be ashamed of, if you have to go that route. It doesn’t make you any less of a person or make your journey any less because you made the choice to take medication. And don’t let anyone make you feel badly for doing so.
  • Anxiety and depression can both be very scary times and in the moment it’s hard to know what to do. At least for me if I can get my mind to just focus on something outside of what is causing me to be anxious I can usually find a way to get out of the super panic driven moment to a calmer moment to focus on one of the things I have mentioned above. I don’t know if any of the above will help you but that have definitely helped me at one time or another.
  • With Love,
  • Amber
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    The Tides of Chronic Illness

    By Guest Blogger Sam Moss

    I was sitting at our local cafe this week, which is situated on a Point overlooking the Bay and beautiful Islands beyond. It really couldn’t be more idyllic and I am blessed to live so close to such a gorgeous place on Australia’s east coast.

    As my husband and I were sipping our cool drinks and soaking up the gentle sea breeze, on what was a mild summer’s day, I was fascinated at how quickly the afternoon tide was beginning to roll in.

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    Only moments before the water was still and there was no sign of change. All of a sudden ripples could be seen and the mud flats began to disappear before my eyes.

    I rarely get out due to my health but this is one special place that I can manage on a good day and it’s perfect to sit back, relax and contemplate life. My thoughts turned to how quickly the tide changes in our lives when living with chronic illness.

    One minute everything can be calm and stable and the next we are inundated with symptoms flaring, numerous medical appointments, x-rays and scans, blood tests, poking and prodding, emergency trips to hospital, feelings of bewilderment and concern. The tidal waves keep loudly crashing around us until the crisis is over and the seas are calmed.

    I have one goal this year. Stay on calm waters! I’ve had too many years of tidal waves crashing over me with my health. I know most of that wasn’t within my control but I have learned some lessons that I’m hoping will keep me out of the firing line of sudden tidal changes.

    As I looked to the right of where we were sitting at the cafe, there was a green tree standing tall and safe as the tide began to creep around it.

    My aim is to be like that tree this year. Standing above the creeping symptoms of my disease and not allowing them to swamp me and drag me under.

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    So while I know some health events will definitely be out of my control, my plan to simplify my life and avoid anything unnecessary includes:

    Reduce Medical Appointments 

    I have 6 Specialists on my medical team plus a GP.  I have been seeing 5 of them every 3 months. With the agreement of my Drs, less appointments means less running around and more time to enjoy “non-medical” activities. This year we are reducing to 6 monthly appointments for each Specialist. We have spread these throughout the year so I am not overloaded at any one time. If I do need to speak to them in between they are happy for me to email, phone or make an extra appointment.

    Reduce Regular Tests

    I need regular blood tests to monitor a number of my autoimmune diseases as well as regular xrays, bone scans and bone density tests to monitor my rare bone disease. In consultation with my Specialists we have reduced my blood tests to bi-monthly and my x-rays/scans to every 6 months.

    I’m feeling a sense of relief just writing this!

    Avoid Surgery Unless an Emergency 

    I’ve had 7 surgeries on my legs over 3 years. I’m exhausted. In the last two I aspirated while under general anaesthetic. My Surgeon and I have agreed “no more surgery” unless a life threatening emergency.

    Know Your Disease 

    This is probably the biggest key to simplifying my life with chronic illness. I’ve been diagnosed with Rheumatoid Arthritis and Sjogrens Syndrome for 8 years now and it is pretty much under control. It flares but I know that we can’t change my medication because of the risks that has for my bone disease.

    We have reviewed every possibility in terms of appropriate medication and we’ve brought in other Rheumatologists for consultation. We have exhausted our options.

    I just have to manage my autoimmune disease flares conservatively with rest, heat packs and pain meds. It is what it is.

    My Bone Disease is my biggest concern. It is completely unmanageable and has a life of its own. I have however discovered what is an emergency (pathological major fracture or pole breaking in my leg) and what is something I just need to live with (constant foot stress fractures, muscle atrophy worsening, muscle bleed).

    I’ve also learned with my bone disease, any significant increase in pain or symptoms will usually reduce to manageable levels within 4 days.  If not I need to call my team asap.

    Get Out More

    With less appointments I won’t have to conserve my energy to be able to get to them. To prepare for an appointment, I can’t go out for the week prior and I need at least another week to recover. With the amount of appointments and surgeries I’ve had over the past 4 years, we have only been able to get to a cafe a handful of times and we have only taken my mobility scooter out twice since I got it 7 months ago.

    That has to change and it now can.

    I will be able to go out on better days and know that I have time, days or weeks if necessary, to recover from the “non-medical” outing. Such a lovely thought.

    When I feel “the tides of chronic illness life” washing over me, as they no doubt will from time to time, I’m going to think about that green, tall tree standing upright as the tide creeps in around it.

    I’m going to remember that there are things I can control and have changed.

    I might get my feet wet but I won’t get swamped.

    Sam xx

    If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum Medical Musings with Friends. It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

    I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

    I also write @ Blogs by Christian Women

    Check out the rest of Sam’s Blog at https://mymedmusings.com/

    The Side Of The Opioid Crisis You Wont Hear About…….

    Opioids Crisis. Opioid Crisis. Opioid Crisis. Sadly, it’s not like The Wizard of Oz and just because I clicked my heels and repeated it three times does not mean it has gone away. But much like Dorothy we aren’t in Kansas anymore. It seems everyday it gets worse and people are going further off the deep-end about the issue. There are doctors dropping patients with no warning, refusing to prescribe meds due to “new laws” that don’t exist. And patients are suffering. The media is only showing the public one side of the crisis. They don’t show you about the people who need them to function. Not because of addiction but to advanced disease process. They also don’t often talk about those who have taken their own life due to lack of medication. Something has to be done. Someone needs to draw attention to the people who are really suffering.

    Before I jump into the issues at hand I feel like I need to put this here. A disclaimer of sorts. I would like to set this straight now so no one can misconstrue my writing later. Is there an opioid crisis? YES. Is it being made to look worse than it is? Possibly, it’s hard to know. Are innocent people who use pain medications just to be a productive person being hurt in the process YES, Three hundred times YES! Am I saying that opioids haven’t led some to other drugs, NO. And I’m not saying that there are drs out there who need to have their license revoked for their illegal and VERY DANGEROUS prescribing practices because there are. What I am saying is that there is a LARGE POPULATION of America’s who are being FAILED by the current United States Medical System. People who never asked to be in the situations that they find themselves in. Those that didn’t “do” anything to cause the pain they live with on a daily basis and would give anything to get rid of that pain, meds and go back to their normal life.

    According to Healthline News in November of 2017 it was reported that there were nearly 100,000 AMERICANS who live with some kind of chronic pain who are not able to get the relief they need. This same article also states that more than 30 percent of Americans live with some kind of CHRONIC or SEVERE pain. To put that into perspective for you more people live with chronic pain than with cancer, heart disease and diabetes combined. Just to spell it out a little further nearly 1.5 million Americans have lupus, approximately 10 million Americans live with Fibromyalgia, approximately 1.3 million Americans have Rheumatoid Arthritis, 7 million American women have Endometriosis, nearly 200,000 people have Crohn’s, and it is estimated that nearly 2-3 million Americans have chronic migraines.

    You may be wondering why I chose to share those stats? I wanted to show you that that approximately 23 million Americans have conditions that cause some kind of chronic pain! Pain that they did nothing to cause. All of these conditions happen on their own without any help from the person they happen to. What I’m trying to show you is that it’s not like these 23 million people went out and tore their ACL or had an emergency or scheduled operation and got addicted to pain killers post op. These people have conditions that won’t likely ever fully go away. And that cause pain frequently. Are some of that large group of people addicted to opioids? I’m sure. But I just want people to understand that it’s not just the people who go in and have an emergency surgery that need pain pills to deal with their pain. There are people like me who have very few days where something doesn’t hurt. Even with changing my diet, and trying heat, heat & pain patches, ice, acupuncture, etc and pain meds are just necessary sometimes.

    I don’t want any pity. That’s not what this is about. I want people to realize that there is a MASSIVE population in the United States who live with daily chronic pain due to nothing they did. They didn’t ask to get Lupus, or Fibromyalgia or Migraines. And I can tell you I didn’t ask to get all of the above plus more.

    No one with a chronic illness that causes significant chronic pain should be made to feel guilty because we need pain meds here and there to continue our fight. We shouldn’t be looked down upon or shamed by anyone, ESPECIALLY MEDICAL PROFESSIONALS, because we are at the point in our conditions where pain pills are necessary. We should feel ashamed to tell people when asked that we use pain medication as needed because we have to. We shouldn’t have to ration our meds or be made to quit cold turkey because some doctor decides he no longer wants to prescribe narcotics after 5 years of treatment. We sure as hell shouldn’t be made to feel like suicide is our only answer when no doctor will listen when we tell them just how bad the pain is and refuses to listen.

    None of that should be happening. But guess what?? It is. And you will NEVER see it on the news. You won’t find a story about the 70 something grandma who was forced to stop their pain meds cold turkey because their doctor decides to follow a “new law,” that doesn’t exists. Or the father of three who felt like he had no other way out than to end his life once his pain medication was taken away with no warning. You won’t see the story about the young newly widowed wife and mom who now has to explain to her three young children that their father is no longer here on Earth because the medical system FAILED HIM. You won’t see the story about the mother of 3 young boys who love baseball more than anything who hasn’t seen a game all year because the pain is unbearable. You simply won’t see it.

    Do you see a trend? All the news will ever tell you about are those who are addicted. Those who started with narcotics and use it as a gateway to heroin. They will tell you about all the negative things that happen because of opioids. But they won’t tell you the negative things that are happening because those who actually need the medication and are no longer able to get them.

    The media will definitely NEVER show you the people who’s lives who have been changed for the better due to pain medications. The people who were in beds for weeks or months who are now out of bed more. Or the people who hadn’t been able to leave their house simply because of the pain, who now due to pain medication are able to at least get out of the house occasionally. Moms or Dads who have never seen their child sing in the church choir or play soccer that are able to solely because of a very low dose pain killer. Those are things that will NEVER get the media’s attention.

    With all things can come addiction. People can potentially become addicted to anything. Some of those addictions are much worse than other but they are addictions none the less. People can be addicted to things anywhere from sweets and soda, to alcohol and sex. And don’t think I am naive to the fact that opioids are addictive and addiction does happen because it does and I have seen it first hand. It CAN happen for some quickly after just a few short days. Or some can take the meds for years and never become addicted. EVERY PERSON IS DIFFERENT. I just want to get some of things out that the new media will never share. Like I have said before Opioids can Be dangerous but they can also be life changing.

    With Love,

    Amber

    A Closer Look At Blood Clots

    This week I got to experience something I experienced so many times when I was working as an RN. I can’t even begin to count the number of patient I cared for who had a blood clot of one kind or another. I never thought it was something I would experience on the side, for myself. Well, now I am. Yesterday, I was diagnosed with two blood clots (DVT’s, Deep Vein Thrombosis) in my leg. As I was brushing up on DVT’s, I thought I would share the information with you all as I am sure that one of you has had or will have a blood clot as some point. So let’s jump right on in.

    What is a blood clot??

    A blood clot is as a clump of blood that is no longer liquid, like you would think of blood, and has changed to a gel-like or semisolid state.

    That being said clotting is a necessary process that our body does naturally that prevents us from losing too much blood in certain circumstances like if we get injured or cut.
    Although, if a clot forms inside one of our veins, it doesn’t always dissolve on its own. When this happens it can be a very dangerous and life-threatening situation.
    A clot that is stuck and can’t move generally isn’t harmful. But most are not completely immobile thus being potentially dangerous. If a clot does break free and travels through your veins to your heart or lungs, it can actually get stuck and prevent blood flow which is a medical EMERGENCY.
    It is estimated by the Centers for Disease Control as Prevention that deep vein thrombosis along with blood clots in the lungs (pulmonary embolism (PE)) affects up to 900,000 Americans each year. These blood clots kill nearly 100,000 Americans yearly.

    Types of Blood Clots

    The humans circulatory system is made up of different vessels called veins and arteries, which are responsible for transporting blood through the body. Blood clots can form in the veins or in the arteries.

    If a clot forms in an artery it is just that an arterial clot. This kind of clot generally causes symptoms IMMEDIATELY and requires immediate treatment and often surgery. If you have an arterial clot it causes SEVERE pain and can causes paralysis of parts of the body depending on where the clot is. It can also cause a stroke or heart attack b

    If a clot occurs in a vein it is called a venous clot. These clots may build up slowly over time, but they can still be life- threatening. The most dangerous kind of venous clot is know as a DEEP VEIN THROMBOSIS.

    A deep vein thrombosis is the name of a clot when it forms in one of the major veins, most commonly in the leg. But it can also happen in the arms, pelvis, lungs, or even the brain.

    Knowing the most common symptoms and risk factors gives you the best shot at knowing what symptoms to seek medical attention for. If you think you have symptoms of a blood clot you need to seek medical attention, because there is no way to know if you have a blood clot without a medical evaluation

    Let’s take a look at signs and symptoms of clots.

    Blood clots in the leg or arm

    The most common location for a clot is the lower leg. That being said the symptoms of a clot in the arm have similar symptoms, and they can vary somewhat due to location of the clot:

    • Swelling
    • Pain
    • Tenderness
    • Warm
    • Reddened area

    The symptoms a person feels will depend on the size of the clot. That explains why some will have all symptoms notes above and some will have all the symptoms.

    **In my case I only had a sore leg. It hurt ached and then felt like a really bad Charlie horse when I walked. I had no redness or warmth. So it would have been easy to over look.**

    Blood clot in the lungs, or pulmonary embolism

    If someone develops a blood clot that travels to the lung that is called a pulmonary embolism (P.E.). A P.E. has very distinct symptoms. The following are symptoms are what could be seen in someone with a pulmonary embolism:
    • Sudden shortness of breath that isn’t related to any kind of exercise
    • Chest pain
    • Palpitations, or rapid heart rate
    • Coughing up blood

    Risk factors for have a blood clot

    Like all conditions there are going to be risk factors that increase your chances for getting that specific condition. And that’s no different with blood clots. So what let’s look at the risk factors for developing a blood clot.

    • A recent, lengthy hospital stay
    • Major surgery
    • Age, over 65
    • Travel, especially lengthy trips wheee you are not able to get up and move around and are seated for four or more hours at a time.
    • Being in bedrest or being sedentary for long periods.
    • Obesity
    • Pregnancy
    • Family history of blood clots
    • Smoking
    • Cancer
    • Certain birth control

    I would have never thought I would have developed a blood clot. I didn’t really have any of the risk factors. So when I woke up with the pain I just blamed it on one of the other pain causing conditions. But by the third day I decided it was time to contact the doctor. I’m glad I did because who knows what could have happened had I not. I always think of the patients I had who has the classic symptoms. But according to the CDC almost 50% of people with DVTs have no symptoms. So I am not all. So learn from me. If you feel like something is wrong go ahead and call your doctor. The worst they can do is run a blood test or and ultrasound and they be negative. But it’s much better that they be negative than you never know and have something catastrophic happen.

    How You Can Avoid The Colds and Flu That Come Along With The Change In Temperatures

    It never fails that as we start to say goodbye to summer and all the fun memories we had, we not only welcome fall, football and changes in leaves. We also welcome allergies, colds and the flu. It almost seems unfair that not only are we saying goodbye to the wonderful summer temperatures and welcoming the cooler temperatures that often cause pain, that we also have to be prepared for all the germs that come with the change in seasons. That being said there are always the argument that people & their germs make people sick, right?!? Not the change in temperatures. This time old argument will continue until the end of time. But it will be interesting to see what science has to say about it.

    Research over the years has actually shows that the viruses that cause people to get sick with things like the common cold are spread more easily when the air conditions are more cool and dry. The cold air also causes your nasal passages to dry out more quickly and due to that the viruses are able to more easily able to adhere to the dry nasal passages and then they multiply, and quickly spread all through your body and make you feel sick. So technically it’s not the air temperature that makes you sick. But that cooler or colder air sure makes it easier to get sick.

    As it gets cooler you will notice that people are more apt to stay inside thus putting them in closer contact with other people. Close proximity is NEVER a good idea, especially as it gets colder because of the higher rates of infections. When there are more people in closer spaces you are more likely to get sick and get sick more often. That’s once reason why if you have kiddos in daycare or school you will see a rise in colds during colder temps. Because they aren’t able to go outside (and of course because EVERYTHING goes in their little ones mouths). Rates of contagious illnesses are going to be found in higher rates in areas where people live in higher proximity to one another. So places like college dorms, nursing homes, prisons, or even hospitals. Simply because people are in close contact with a large number of other people and because germs spread more easily, even when it seems like ever precaution is taken to prevent from happening. In fact this is the main reason why you may see hospitals or nursing homes put visitor restrictions in place during cold and flu season preventing anyone under fourteen, or anyone who has symptoms of an cold or flu like illness from visiting patients in the facility.

    People who deal with any chronic conditions like fibromyalgia, lupus, COPD or even asthma can be affected by changes in seasons and temperature. Significant changes in the air temperature can not only cause asthma flares as well as flares in pain. A person with underlying asthma or COPD may not be actually sick but as the seasons change and the temperatures drop but their symptoms may actually look like they have an infection due to inflammation and the weather changes.

    Those with chronic pain will often be impacted by changes in temperature and or barometric pressure. If you have any kind of pain causing condition like arthritis, lupus or fibromyalgia chances are you will have increased pain when the weather starts getting cold. The more you pay attention to the weather and your health, the more you will be be prepared and be able to effectively handle your health properly.

    No matter the cause of your symptoms, whether they are from a cold, the flu, or even seasonal allergies, there a many things you can do to prevent the spread of germs. There are ways you can prevent those germs from spreading and to keep you and your family as healthy as completely possible.

    • The one that has beat into our heads since before we were even old enough to really understand what it means, is hand washing. Hand washing is the simplest way to prevent the spread of germs. One key point to remember about hand washing is to remember that you need to wash your hands with soap for at least 20 seconds under hot water. And the other thing people often don’t think about is that you should NEVER touch the handle to turn off the sink with your bare hand. Doing so negates washing your hands completely. So always use a paper towel to turn off the sink. Make sure that you are washing your hands before and after preparing food as well as before eating, after using the bathroom and changing a diaper. Also if your skin gets dry due to the colder temps and frequent washing, use a moisturizing lotion to avoid cracks in the skin.
    • Do your best to try to avoid touching your face. It is hard but it is also the main way that we become ill, as germs enter our body through our eyes, mouth, or nose. When you have germs on your hands you can easily infect yourself when you touch your face with your hands. Try to do your best to teach your kids to try to avoid touching their faces when you are out in public or around those that you know are sick.
    • If you can’t actually wash your hands with soap and water, the next best option is hand sanitizer. If you are out to eat, Shopping or anywhere really, you are always coming in contact with germs. So using hand sanitizer is a good quick option until you can get to a sink and wash with soap and water!

    Doing all of these things consistently will allow your body to fight off infections. Your immune system won’t work as well as it needs to if your body isn’t healthy. There’s no guarantee that you won’t get sick if you take care of your body, but chances are good it will happen a lot less often if you do your best to take care of your body.

    So what can you do about your chronic Illness to prevent your condition from getting any worse, or from having a flare?!? Well, there are several things. First of all, continue with whatever you do as maintenance for your condition. Continuing that plan of care help minimize the effects you experience when the weather changes do happen. Next, you should get a flu shot. I realize that is controversial and not all people will agree with me on that. But research shows that the vaccine won’t protect a person from every respiratory illness, but it will protect you and those around you from getting the flu. Even if you aren’t in a HIGH-risk group the flu is still very highly contagious and you could potentially pass it on before you even feel like or know you are sick.

    While I LOVE fall and just about all things it brings, the colder weather is not really something I enjoy. Isn’t it nice to know that there is a link between the colder weather and your increased pain and cold symptoms? While the colder weather may not have directly caused the increase in symptoms it is nice to know that there is a reason. While fall brings a lot of good things like all things pumpkin, football, and the ability to wear sweatshirts. It also is the beginning of cold and flu season. So remember to always wash your hands, carry your hand sanitizer, and get the flu shot!! Do your best to keep you and your family healthy through the fall so you can enjoy all the good things.

    With Love,

    Amber

    It’s Okay To Be Me

    It seems like no matter what you do these days it’s going to potentially offend somebody for some reason. It doesn’t matter if you are healthy or chronically ill. That being said when you are chronically ill it seems like everyone has an opinion on how you should be living your life. The things you are eating, how you are sleeping, what medications you are taking. And at some point it becomes overwhelming. It can get to the point that you feel like you are no longer living life for you and you are just doing things and living life to please those around you. That may last and be okay for awhile. But at some point you are going to realize that you just can’t live that way. No one can, chronically ill or not. But especially those of us who are chronically ill. Simply because the stress of always trying to please someone else can cause stress on our bodies and in the end make us sicker. That in mind let’s look at a few things that are okay to do and you should NEVER feel guilty for doing!

    1. Saying NO

    For most saying NO is not something we like to say or something that comes easy. But it is something that we MUST say from time to time. No one can do everything that is asked of them especially not someone who is chronically ill. When it comes to matters of your health & wellbeing saying no to protect your health is never a bad thing. Let me give you a little example: your bff who has three kids under six, who you love like your own, invites you over for dinner and a movie with two other couples and their kids during cold & flu season. In this case you must think of your health first and kindly say you’ll pass this time and catch up with them later. You really can’t chance picking up a big from the kiddos.

    2. Taking a ME day

    I don’t know how many times lately I’ve heard lately that that people are all about themselves. But are they really?! Or is that a generational thing?! Because most of my friends and people I know spend more time caring for and about those in their lives than they do caring for and about themselves. That being said if you are one of those people who spend more time taking care of your family and doing kind things for your friends than this is for YOU! You should never ever feel guilty about taking a day just for you. Spending a day doing just what you want. Whether that’s a day in pajamas binge watching Netflix, getting a mani & pedi, or having lunch with your friends. A me day is a good way to reset and just relax. And something you should never feel guilt about.

    3. Your views on medicine

    This can be a very personal and controversial topic. That being said your views are yours and you should never feel guilty for your views. You have to do what is best for you, your kids and your family and other views should not impact your decision. Everyone will have their own viewpoint and not everyone will agree with your differing viewpoints is what makes the world go round. And not something anyone should be made to feel guilty for.

    4. Being “different” than someone else.

    Like I mentioned above everyone is going to have different views on things. Whether those views be about medical treatments, vaccines, politics or religion, you will always find different views. Even among the closest of family and friends. But that’s OKAY. Differing viewpoints are good and are what make the world go round. That being said never let anyone make you feel guilty for having different viewpoints.

    5. Feeling good about yourself

    I feel like it takes a long time to truly find yourself and who you want to be. During the years spent searching for who the real you is chances are you probably didn’t have great self-esteem. So when you finally find yourself and feel good about that person don’t let anyone change that. Once you can finally look in a mirror and love what you see, that is one of the most amazing feelings in the world. You deserve to feel good about yourself!! You should never feel guilty about having good self esteem.

    People are different, have different views, and do different things, and that’s what makes the world go round. But you should never feel guilty for any of those things. As I have said many many times you have to watch out for you because no one else will. So don’t ever let anyone else make you feel guilty for being you.

    With Love,

    Amber

    Life Lessons

    By Bethany Sibley

    When I was first diagnosed with a chronic illness, I never thought that it would amount to life lessons. How could something that caused me so much pain, frustration, and uncertainty teach me anything ..? It was in those moments of pain, frustration, and uncertainty, though, that I gained some of the most valuable life lessons. It was in those moments that I gained something I will never be able to quite put into words.

     It is OK to need and ask for help. 
    As someone who has always been fiercely dependent, it struck me as so strange asking for help with my newly diagnosed chronic illness, this was a massive adjustment. At first, I tried to do it all on my own. But as my health has started going down hill further and I became weaker, I began to more-so need the help of others, even if I still felt bad for asking. I finally had to admit to myself that asking for help was ok and did not make me any weaker or incapable of battling my illness. I had to admit to myself that I truly did need the help of others, whether it was to help doing chores or cooking when I am out of energy. There is absolutely nothing wrong with asking for and accepting help with a chronic illness! Your family and friends want to help and will never see you as a burden, so rest when you need to and take the hand reaching out to you.
     How to surrender.
    I like lists and I like to organise. I like organised lists! I have always been the type of person who has to have everything planned out, routines to follow, and the feeling that I am in control. The thought of losing control used to be terrifying to me: until I became chronically ill. When I became chronically ill, I learned that my illness had no schedule, no agenda. My illness was running by its own clock whether I liked it or not. This forced me to learn to let go of some of the control that I ever so craved. I had to learn to let go of knowing exactly what was going to happen next. Was it scary? Yes – and it still is! But learning to surrender control of the parts of my life that I truly have no control over has been one of the most freeing changes that have come from my illness.
     Do not take life for granted.
    No one wakes up expecting to one day become chronically ill and sometimes we forget just how precious and fragile our health truly is until it is taken away from us. Before I became chronically ill, I loved to cook, play outside and generally everything else, but thats not to say that I didn’t complain about it from time to time. However as time went on I knew I was sensitive to the cold and the heat, this would stop me wanting to go outside and play, or cooking for the family. I became mostly housebound, going out once a week, having to prepare myself for the pain and burning that dinner would bestow. For years, I took my ability of having a normal life for granted, never expecting it to one day be taken away from me. Nevertheless, my chronic illness has taught me not to take anything in my life for granted.
     There is great power in a positive outlook.
    While it’s not realistic to be positive every minute of every day with a chronic illness, striving to find positivity in every single day is monumental in living happier, despite the challenges you face. When I find myself feeling frustrated, angry, or uncertain about my current situation or the future, I remind myself that what is going to happen will happen regardless of whether I face it with a positive attitude or negative attitude. Why not choose to make the most of the situation?
     You are not alone.
    One of the most valuable lessons that I learned from my chronic illness was that I am not alone in my fight. In addition to family and friends, I have been introduced to an amazing community of other people fighting both similar and very different illnesses. Finding this community of amazing warriors has served as a valuable reminder that even on my most challenging days, there is someone who understands. Getting diagnosed with any kind of chronic illness can be scary, lonely, and very isolating, which is why it is so important to remember that you are not alone. Reach out to friends, family, and others going through similar battles. It is these life-changing chronic illnesses that bring us all together and remind us that we are all human and we are so much stronger together.
     Resting does not equal laziness.
    This was one of the hardest lessons that my chronic illness taught me. As someone who has just started work, I have found that I need more rest then play. Resting is providing my body with precious time to heal, renew, and strengthen. Pushing myself to keep going when my body is asking for rest only ends up setting me back further and then forcing me to rest (and maybe even for longer than before). Listen to your body, know when you have overdone it, and allow yourself time to rest when your body is asking for it.
     Your chronic illness does not define you.
    When you have a chronic illness, it is easy to feel like you have become your illness because it consumes so much of your life. You are labeled by your illness when you go to the doctor’s office or hospital.Your chronic illness may have visible side effects or requirements like a feeding tube, wheelchair, colostomy bag. But here’s the thing: your chronic illness does not define you. It does not get to decide who you truly are on the inside. You are so much more than your chronic illness and the things that it brings. You can still be loving, kind, bold, generous, funny, brave, optimistic; nothing can ever take away the love and kindness that you hold within your heart.
    While my chronic illnesses have changed my life in many scary and painful ways, I am forever thankful for the life lessons that it has taught me. It has made me a stronger, braver, and taught me to truly appreciate every day that is given to me. No one knows what the future holds, but when you seek the positive and the lesson within every challenge, you begin to realize that sometimes our biggest blessings are hidden within our biggest lessons. 
    Know that it takes nervy defiance and stone-cold courage to wake up, soldier on and fight your everyday internal war.

    About the Author

    Bethany is a 20 year old from England; she suffers from Raynauds, Erythromelalgia, GERD, Hypermobility, Anxiety, Depression, and PTSD. She is also the creator of Young Sick and Invisible, a chronic illness blog.

    Blog: https://youngsickinvisible.wixsite.com/blog

    Did You Know There Is A Link Between Domestic Violence And Chronic Illness?

    Domestic Violence is not a topic to ignore as it is an ever growing problem. A problem that is being focused on this month as the month of October is Domestic Violence Awareness Month. I would imagine, based on statistics, that each of you reading has been impacted by domestic violence in some way, if not you directly, than someone you know has. I say this because the National Coalition Against Domestic Violence says that 1 in 3 women and 1 in 4 men have been victims of [some form of] physical violence by an intimate partner within their lifetime. No certain kind of person is too good for domestic violence as it doesn’t follow any social economic lines. It can happen to any one from any race, color, class or educational background.

    Let’s look at some statistics!

    • According to the Huff Post Women are more likely to be victims to violence from a intimate partner with 85% of all domestic assault cases being women and only 15% being men.
    • According to Huff Post Women with disabilities are FORTY PERCENT more likely to experience intimate partner violence — especially severe violence — than women without disabilities.
    • The Hotline reports that nearly half of all women and men in the US have experienced psychological aggression by an intimate partner in their lifetime.
    • According to Springtide Recourse 35% of all women who are or have been in married or common-law relationships have experienced emotional abuse. In comparison, 29% of women have been physically assaulted by their male partners.

    Some feel that emotional abuse is not that big of a problem but it has been found that emotional abuse is actually the largest risk factor and can be the biggest predictor for physical violence

    Having come from past relationships where there where I dealt with some abuse (no physical abuse). I can say that the above statement is true. Emotional abuse does lead to physical abuse. While I can say I was lucky and got out before the abuse got physical, but I could see it coming. There were signs pointing towards violence. And pointing to the fact that it likely wouldn’t be the wall that would punched next time, it would be me. Or that it likely wouldn’t be the glass that would broken next time, it would be me. When those things started happening I got out. I stayed longer than I should have, but I got out. That being said I do understand why ladies stay. You always want to believe the best, believe that it could never be true, believe that the lies aren’t true and believe that they can change. Sadly, chances are, it will be you and the lies are true, and you need to get out before it’s too late. I know this is going to sound crazy and I know that some of the people I’ve said this to over the years have thought just that. But there were times when I wished I would have just been hit. The physical wounds would heal and go away. But the awful things that were said to me stay with me so much longer.

    As I am writing this post this morning the following makes me feel like I’m not alone in my thoughts and feelings. And made me realize I am not alone in how I’ve dealt with everything.

    “Most women indicate that emotional abuse effects them as much, if not more than, physical violence. They report that emotional abuse is responsible for long-term problems with health, self-esteem, depression, and anxiety. In one study 72% of women reported that being ridiculed by their abusive partners had the greatest impact on them, followed by threats of abuse, jealousy, and restriction [or isolation]. It was also found that the impact increased with the frequency of the emotional abuse.”Springtide Resources

    People always just say why don’t women JUST LEAVE?!?? And there are a lot of reasons. The biggest being safety. Many women dealing with physical abuse fear their that their abuser will find her (and her kids, if she has any) and hurt her, maybe worse than ever before or even kill her. Another reason is often lack of resources. In many cases they don’t have money of their own that’s not tied to their abuser. She also may have not told her family so they don’t understand or may not support her decision to leave, because they may feel like she is making it up or making it seem like it’s worse than it is. Sadly, in many cities outside of emergency, short-term shelters, there really aren’t many long term options available to women who have been abused. Due to the lack of accessible affordable house, low income, and affordable legal aid on average an emotionally abused women will leave her significant other FIVE times before leaving for good. Springtide Resources And for a women who has a chronic illness it may be even harder for her to leave due to her health.

    As I noted at the beginning of this article women with disabilities are more likely to experience abuse. As I was doing my research I was shocked to find that there is a strong link between those who suffered domestic abuse and those who have some type of chronic illness. There was a survey done in 2013 By MORE Magazine and the Verizon Foundation of domestic violence survivors in the US. This particular study showed that that 80% of domestic violence victims experience chronic health problems such as diabetes, high blood pressure, chronic pain, asthma, and insomnia. It also found that women who had a past with domestic violence are not only more likely to suffer from chronic illness, they are more likely to suffer from multiple chronic illnesses then women who have no history of abuse.

    Domestic violence is a very personal and often very hard to talk about, or admit it happened to you. For some reason it almost feels like you are less. If a person because it did happen. But that isn’t the case. It doesn’t make you any less of a person. It happened to you Not because of you. Please if you are in an abusive relationship or know someone who is, reach out to someone and try to get out. If you don’t feel like you can reach out to a friend or family member you can always reach out to The National Domestic Violence Hotline at 1-800-799-SAFE. They also have a Live Chat feature that can be found at https://www.thehotline.org/contact/ that is always available. Or reach out to your local dr, pharmacist or anyone in your medical community as they are all mandated reporter. If you report abuse to them they are required to report it to the law. No matter who just reach out if you want out.

    If you want more statistic or resources check the links below:

    https://domesticviolencestatistics.org/domestic-violence-statistics/

    https://ncadv.org/statistics

    https://www.womenshealth.northwestern.edu/blog/beyond-bruises-campaign-domestic-violence-chronic-illness

    https://www.domesticshelters.org/domestic-violence-articles-information/the-link-between-abuse-chronic-fatigue-and-fibromyalgia

    With Love,

    Amber