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

Words Not Required

By Bethany L. Douglas

Did You Know That In First-World Countries, Studies Have Shown That The Abortion Rates For Pre-Natally-Diagnosed Down Syndrome Babies Runs Anywhere From 50-90%? These Babies Are Killed Just Because Of The Diagnosis! (More On That Here.) It’s An Astonishing Number.

It’s A Devastating Number.

The Most Recent Data Collected In 2015 Estimated That At Best, The Population Of Ds Have Been Decreased By 30% Due To Abortion- The Number Would Be Higher If The Actual Numbers For Abortion Due To A Ds Diagnosis Were Absolutely Known.

Wow.

But This Blog Isn’t Going To Be About Death. I Want It To Be About Life.

October Is Down Syndrome Awareness Month And I’ve Dedicated My Monday Blog Posts To All Things Ds Or Trisomy 21 As It’s Officially Called. This Particular Population Of People Have Always Held A Special Place In My Heart Having Worked With Them Extensively Through Camp Barnabas And As A Special Program Director Through Arc Of The Ozarks Back In My Early 20s. But It Took On A New Meaning For Me When We Welcomed Our Daughter, Anna, Into Our Family This Last January. She Was A Surprise Baby With Downs And Our Life Couldn’t Be Fuller With Her Around. She Is A Special Angel I Believe God Sent Directly To Our Little Family.

But Not All Of These Angels Are So Lucky. Many Do Not Make It To Delivery; And For As Alarming As The Numbers Above Are… The Numbers For Aborted Babies With Ds In Other Countries Is Even More So.

But This Post Is About Life- So Let Me Tell You A Story About Life.

My In-Laws Are Currently In South Korea Teaching ESL And Heidi Called Us The Other Day To Relate A Heart-Wrenching Occurrence That Happened To Her. In Korea, Though Not Officially A One-Child Society, They Take Great Pains To Produce What Is Considered The Perfect Child. According To Heidi, Everyone Gets Extensive Pre-Natal Testing Performed And The Abortion Rate For ANY Kind Of Abnormality Is Near 100%. It’s Not A Religious Or Moral Thing There, It’s Not Considered Murder, It’s Simply Cultural Way Of Life For Them. From What I Understand, The Government Doesn’t Officially Sanction Abortion, It Just Simply Turns A Blind Eye To The Hundreds Of Thousands Of Abortions The Hospitals And Doctors Perform Each Year. No Questions Asked. Heidi Explained There Is A Huge Education Gap And Experience Gap Within This Culture With All Kinds Of Disabilities, Down Syndrome None The Least. You Simply Don’t See Anyone With It. They Are Kept Hidden, Locked Up, And The General Public Is Somewhat Fearful Of Them. Those Who Do Slip Through The ‘Cracks’ Of The Testing Are Shunned. There Is An Assumption That This Population Is In Pain, They Suffer, Are Unhappy, And Unable To Contribute To Society.

But Back To My Story- Heidi Had Met Up With One Of Her Students One Day Who Was Confessing That She And Her Husband Had Bad News. They Were Pregnant And Had Just Received The Results That Their Baby Would Have Trisomy 21. They Were Devastated And Had Made Preparations For The Abortion In A Few Weeks. She Spoke With High Hopes For The Next Child, That Maybe That One Would Be Better. Heidi Had A Decision. What To Do? Knowing That The Education Gag Is Immense, She Did All She Could Think To Do. Explaining That She Has A Niece With Down Syndrome, She Whipped Out Her Phone, And Opened Facebook (Because, You Know, Who Wouldn’t Have The Presence Of Mind To Do That During Such A Heavy Conversation?!?)

Heidi Showed This Lady Pictures Of Anna. Picture After Picture After Picture. Pictures Of Her Smiling, Laughing, Being Held, Being Loved, Being Celebrated. This Woman Saw, For The First Time In Her Life, A Child With Down Syndrome Being Included, Loved On, Taken Care Of, And Cherished. By Everyone. Picture After Picture With Literally Hundreds Of People. (Anna Has No Shortage Of Fans And Pictures All Over The Internet…) No One Seemed Scared Of Her, No One Looked Uncomfortable, No One Shunned Her. Young And Old People, Men And Women, Other Disabled Friends, People In All Walks Of Life Were Pictured Celebrating Her Existence. She Saw Pictures Of Anna Happy, Content, Interactive, Healthy, And Most Certainly (Even At Her Young Age) Giving Just As Much Love Back As She Receives.

            

What Heidi Perhaps Could Not Bridge In Educational Facts And Figures, Anna Did By Just Being Anna. No Words Required.

The Lady Broke Into Tears Midway Through And Kept Repeating, “She Just Looks So Happy. She Is Healthy! Everyone Loves Her.” And Slowly Her Realization Of The Precious Life Inside Began To Take Shape.

Heidi Left The Conversation, Not Having Tried To Talk Her Out Of Ending The Baby’s Life, Or Re-Educating A Dulled Cultural Vision. She Simply Told Her She’d Be Praying For Wisdom For Them. She Simply Did What She Could To Show What A Life With Ds Can Be- That These Precious Souls Are Worthy Of Life And Are Worthy Of Living. No Words Required.

It Is No Surprise That My Heart Aches For Those Babies Whose Lives Are Taken From Them For A Diagnosis That Is Not Well-Understood Or Accepted. In America, In Korea… Anywhere. God’s Heart Aches As Well. It Must Bleed Endlessly For The Little Lives He’s Takes Back To Be With Him In Heaven Too Soon. But He Is At Work As Well.

God Doesn’t Need Words, He Doesn’t Need Us To Have All The Answers. He Just Needs Us To Be Open To Let Him Do His Work Through Us.

Maybe Through Facebook. Maybe Through Blogs. Maybe Through Pictures.

Words Not Required. Anna Sure Doesn’t Use Them Yet! He’ll Get It Done Still.

And By The Way, The Couple Came Back A Few Weeks Later And Told Heidi That They Changed Their Mind. They’re Keeping The Baby.

You can find all of Bethany’s work, and information in the book she wrote on her website at www.bethanyldouglas.com

You can find her on Twitter @BethanyLDouglas and on Instagram @bethantldouglas

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

Tips To Make Cooking Easier

Cooking has been a favorite part of my life since I was a toddler. Some of my favorite early memories revolve around learning to cook with my grandma. We spent a LOT of time in the kitchen throughout my childhood. She taught me how to make recipes ranging from quick and easy recipes to very long and in-depth meals. We baked pies and cakes. And even spent an entire summer baking different kinds of bread and trying to perfect the look of our rolls. As I grew up and moved out on my own I continued to enjoy cooking, and loved getting a recipe box from my grandma that held many our favorite recipes that we made together.

Sadly, when my health started decline and my chronic illnesses got worse, my time in the kitchen also declined. It became harder to cook and became something that was much more trying. Over the years I have found some tips and tricks that make cooking with a chronic illness easier. And today I want to share those with you.

  • Plan ahead – Over the years I have learned that the more unhealthy I eat the more aggravated my fibromyalgia is. So I’ve tried all sorts of different ways to plan ahead so I can eat healthy. I have found that what works best for me is to prep my meals for week ahead of time. On a day when I’m feeling well I will order my groceries, pick them up and do what I can to prepare for the week. Whether that’s marinating meat, grilling chicken, precooking ground beef for tacos or spaghetti or chopping veggies. I do whatever I can that will make cooking later in the week easier. I haven’t tried it personally, but I have friends that will pre-package their smoothie ingredients into freezer bags, so they can just grab the bag from the freezer and dump it in the blender.
  • Keep meals as simple as you can – I love looking for new recipes on Pinterest. But I can’t click the back button fast enough when I see a list of 15 ingredients or requires more than 45 minutes to prepare. And I no longer care to make sure that each meal has a certain amount of protein, veggies and starches. As long as it’s not all fat and starches I’m good with it. Most of my meals these days are something slow-cooked or roasted. I try to do high protein, and low starches but I don’t stress if that’s not exactly what each meal is.
  • Make bigger portions/more than you need – When you are preparing to cook, gathering ingredients and such you should think about making double or triple of the recipe. By doing this you have meals for now AND meals for later. I like to do this especially with soups and casseroles. If you &/or your family aren’t big fans of leftovers then make more and freeze the extra. When you pull that dish out in a couple weeks it won’t feel like leftovers.
  • Get yourself a good crock pot or – I LOVE LOVE LOVE my crock pot!! I can not say enough good things about it. I love being able to throw a few things in it in the morning and having a meal 4-8 hours later. It doesn’t really feel like cooking because I didn’t have to do much except chop a few things and throw them in.
  • Simplify grocery shopping – Grocery Shopping is such a pain. Literally and figuratively. Especially during cold and flu season. And it always just takes so much energy. My area is a little behind the times but about six months ago the Walmart closest to me started offering grocery pickup and it has changed my grocery shopping game. I can just go online order my groceries and just pick them up without ever leaving my car. This prevents all the extra purchases I might make because I see things as I’m shopping and decide I need them. It also prevents the fatigue that comes from Shopping and it cuts the chance that I will pick up any germs from anyone while Shopping eat down. So I highly encourage you to do some form of online grocery shopping. Whether it’s through amazon, or instacart who deliver your groceries to your home. Or Walmart or Hy-eve where you have to go and pick your groceries up!
  • Find a good memory foam rug for the kitchen – I had a friend suggest this to me several years ago and it really helped me. I actually bought one for the area in front of my stove and one for in front of the sink. I did that because those are the areas that I generally stand in place the longest while I am in my kitchen. But if I am doing prep work and chopping and have a lot of chopping to do, I will move one of the rugs over to where I am standing. You might think this one is silly. But you would be amazed at how much it helps to prevent some of the pain you would normally get in your feet in legs. I find that it also helps some to minimize the pain in my hips and back as well.

I love to cook and I hate that it’s one of the things that my health has taken from me. So I have worked really hard to find ways to be able to continue cooking when I feel like it. I hope that you can find these tips helpful.

If you have any tips that you have found to be really helpful for you in the kitchen don’t hesitate to leave them for me in the comments below!

With Love,

Amber

How I Got To Where I Am

Looking back and thinking about when my health journey began and it’s honestly hard to remember. As long as I can remember I was always “that kid” who was sick & I never had perfect attendance due to illness. When did my health get really bad?!? Sometime during high school. I remember when I was fourteen I started having intense abdominal pain that no one could ever diagnose other than to say it was for sure not my appendix. Then in 2001 (my junior year) I got sick and was diagnosed Mono and it seemed like it was everlasting. It stuck around forever. Over six months in fact. Once I was diagnosed with Lupus the doctor said that the long lasting Mono was most likely my first lupus flare.

From 2001 let’s fast forward to 2011. Yes, that’s a big jump. But there was nothing big that happened health wise during that time. It was just more of the same. I was always sick and I continued to have the abdominal pain that no one could diagnose. Finally in the fall of 2011 I plead my case to my OBGYN and she agreed that it was time to go in and do a laparoscopic surgery to see if I had endometriosis and excise it all if I did Indeed have endometriosis. Well, the surgery showed that I did have endometriosis and she was able to take care of everything at the time of the surgery. So that helped immensely with the issue of the abdominal pain.

Now we will jump ahead a little further to Feb 2012 when everything went down hill. I was admitted to the hospital in February that year for a week for a respiratory infection that no doctor was actually able to diagnose or effectively treat. I ended up going home on HIGH doses of prednisone and had to take an entire Month off of work because no matter what I did, I couldn’t breath. At this time along with the breathing issues I also started having PAIN. Widespread pain. Pain like I have never experienced before. Pain that no one had an explanation for. So I couldn’t do much activity because I couldn’t breath, and everything hurt, and I was SO tired. This wasn’t run of the mill fatigue this was life changing fatigue. But no one seemed to me concerned. Sadly due to all those things combined I had to change my job at work and leave my charge nurse job on the post surgical heart and lung floor where I had been for 5 years since graduation. I had to quit a job, that I had not even started, that I was so so excited about. I had just been hired to teach clinical for a local nursing program, which had always been a dream of mine. And I had to drop out of the Masters of Nursing in Education Program that I was 8 weeks into. Because of my health.

Looking back I can that my hospitalization in Feb of 2013 was just the beginning of the decline in my health. That July, I was diagnosed with Systemic Lupus among other things. Though troubling and scary, it explained so much. It explained why I had been feeling the way I had and the symptoms I had that no one could ever figure out. Along with all the issues I had experienced over many previous years that didn’t seem big at the time but now all added up and made total sense. In the months and years following my Lupus diagnosis I have been diagnosed with so many other life altering conditions that made it hard to see any kind of future for myself. Just to name a few, I was diagnosed with Fibromyalgia, Endometriosis, Interstitial Cystitis and other chronic illnesses. Not to mention the migraines that years later morphed into hemiplegic migraines. And like i said above, after the Lupus diagnosis it became clear that I wasn’t going to be able physically to continue working as a nurse on the floor. I not only had to leave my job, I had to step down from my teaching position with the nursing program before I even started. And I had to drop out of the masters program that I had only just begun. To say the least I was crushed. I just couldn’t understand why God would allow these things to happen and what I had done to deserve so many trials.

At that time I honestly had a really hard time seeing past the actual diagnosis. I couldn’t understand why God would take away my ability to do the things I had always dreamed about. My job, furthering my education and the ability to have children. I mentioned earlier that I was diagnosed with endometriosis and sadly between the endometriosis and the lupus I will likely never be able to carry my own child. It would never be safe. That has probably been the hardest change for me to accept. I have dreamed, like many other ladies, about having my own babies since I was a kid myself. I had names picked out in my head and everything. And before anyone says anything, yes, I know there is adoption and other routes which I may look into at some point. But I have come to accept that the dream of actually carrying my own child will likely never happen.

In the months (and honestly even years) following my Lupus diagnosis I struggled. I struggled in pretty much every sense of the word. I struggled to find my place in my workplace. I also struggled to find my place in my relationships (family, friends, romantic) as I felt like nothing was the same even when others didn’t see it that way. Sadly, I lost friends and relationships that I thought would be lifelong all because of my health. These conditions are something I am going to be dealing with forever and can’t just walk away from and have had hard time accepting. And those people did the one thing I wished so much that I could do. They threw up there hands and walked away.

Probably around 9 months in I began to realize that something had to give. Something had to change. I couldn’t continue going at things the way I was because something had to give. So I searched for a place I could go for support. Someplace I could go and talk to others who were living through the same issues that I was. A place where I could go and openly express my feelings without being judged, a place where I could find information on the issues I was dealing with. I looked for local resources and online resources, but I couldn’t find a place where I really felt comfortable. After spending time searching, it became clear to me that I was supposed to create the place I had spent so much time looking for.

After I realized that I was supposed to create this place of solace and education that I had been looking for. After I finally came to the realization, I spent a lot of time researching support groups & educational groups. I wanted to find out what made these groups successful, and what made them flourish. So I did just that. I recruited a few of my fellow Lupies (aka someone with Lupus) -and friends to help me and we created a Lupus & Chronic Illness Support Group on Facebook. A group we call “Lupie Groupies.” We created a group where those dealing with chronic issues could go and be real and totally honest. A place where judging others for their thoughts and feelings is NOT allowed. A place for those who were newly diagnosed, as well as for those who have been diagnosed for decades and everyone in between. A place to find education on their conditions and as well as information on treatments.

At first we were a very small group of like 75 people, but over the last 4+ years we have grown to over 600 members. When I started this journey I would have never dreamed that I could develop a support group that would grow to be so big! I have received such amazing feedback over the last four years from people in this group. People telling me that the group has given them hope, and that they have made life long friends in the group.

The last two years have been incredibly trying as I had a seizure, totaled my car, lost my job and had to move back in with my parents. This was never where I thought my life would be but it is what it is. I’ve had my highs and very very many lows. But I feel so lucky enough to have this amazing blog as a source of outreach. I love that I have this platform to spread awareness and use it as an outlet for my feelings. Some people aren’t lucky enough to have one calling in life. But I feel so lucky that I got 2. The first was nursing and the second was my support group and my blog!

I know that makes no sense at all. But the last six years since my diagnosis hasn’t been all bad. I have found my tribe, those people in life that you know were meant to be there and will be there forever. And most of them, not all but most, are fellow spoonies. Because as much as I hate to admit it, friendship with a fellow Spoonie is just easier sometimes. Not only can I say that I am lucky enough to have found my tribe but I feel like I have been blessed with a second calling. I don’t feel like everyone is lucky enough to get one and somehow I got two. Well, maybe 1.5. I feel like I was supposed to get these conditions so I could use my medical background to teach, spread awareness and provide support to others in similar situations. And I love it!!! Do I wish I could make a little more income from it?!? Ya!!! But maybe someday!! Right now I just feel so blessed that I am able to take my horrible health and turn it into a positive. If someone would have told me this is where I would end up I would have laughed. But honestly I am pretty content. Do I miss work? Yes, yes, a million times yes! But I truly feel like I have found my calling! I was put where I am to be a resource, a friend, a blogger, a leader to those who are in similar places. I was put where I am for a reason and I have had to adjust to that and learn to live in that place.

With Love,

Amber

Parenting with Chronic Illness

By Erin Shaffer

The first thing you need to know about parenting with a chronic illness is that it’s impossible.  Let me break it down for you.

If you think of your energy as a monetary budget, you can more easily visualize this.  A normal person has an energy budget like the bank account of an upper middle-class American.  Regular deposits are made, and there’s a backup savings account to deal with any emergencies.  Their resources aren’t unlimited, but it’s pretty much enough to get them through the ups and downs of normal life.  When a car breaks down or a home repair is needed, they take a little from their savings accounts, maybe trim up their spending a little, but they can continue without much of an interruption in their lifestyle.

When a person has a chronic illness, their energy budget looks a bit different.  The resources in the account are meager, and there’s no savings to cover overdraft.  It’s as if they’re on a fixed income, with stingy little deposits coming at irregular intervals.  It’s from this perpetually depleted resource we must draw to find the energy to make it through the day.

What about a parent with chronic illness?  Okay, so picture that skinny little sad bank account, but with a big ole’ student loan payment being billed with merciless regularity.

See?  Impossible.

Right?

And yet, if you’re reading this, if you’re a parent with chronic illness, you’re doing it.  You’re doing exponentially more with exponentially less.  Maybe you don’t know how you’re doing it.  Maybe you think you’re doing a lousy job.  But you’re doing it.

I was diagnosed with Fibromyalgia when my daughter was two.  I’d been having pain for a few years that no one could find the cause for.  I ran the gamut of super-expensive diagnostics that diagnosed precisely nada.  I was put on heavy opiates long enough to become completely dependent, then told I was a drug seeker and denied the medications that were allowing me to function even as they made me act like a complete nutcase.  I took myself off opiates and learned to work through the searing pain.  Then, I got pregnant and gave birth via c-section.  I lost a lot of blood, and my energy level never quite recovered.  For a long time, I thought I just needed better nutrition.  I thought I needed to work out more.  I thought I was just going through what all new mothers went through.  After all, I was caring for an infant in the daytime and working full time as a charge nurse at night.  My (step)son is older, and he helped a lot.  Actually, a lot more than he should have had to.  There were so many days when I seemed to bleed pain and fatigue, when no matter how I tried I just couldn’t make my body move.  Work became more difficult.  I went to the doctor and was told I was too fat and given the most cursory of examinations before being dismissed.

Then one night, a co-worker tapped my shoulder to get my attention.  Though the touch was light, it felt as if someone were digging a spike into my shoulder.  That spike stayed there for over an hour.  That was when it clicked:  I have Fibromyalgia.  One of my oldest, most faithful friends has fought the fibro fight for many years, and I recognized the pain from the way she used to talk.  I looked up symptoms, found a new doctor that actually looked me in the eye when I talked, and told her my suspicions.  She thoroughly examined me, a lot more thoroughly than anyone else.  She also actually looked up the diagnostic criteria for fibro and began checking tender points.  I had a diagnosis, but I didn’t know what to do with it.  There was no cure.  The few meds that sometimes work for fibro, didn’t.  I still had no energy, and no matter what variants of a healthy diet I tried it didn’t change.  Caffeine didn’t work.  Supplements didn’t work.  I had to get through day by day, hoping that I was doing enough to keep my kids happy and healthy.

The holidays were especially hard.  I’d always loved Christmas, but now I started to dread it.  There was always pressure to work more, to do more, to take the kids more places and somehow instill the air with Christmas magic.  Most of my memories around my daughters’ first few holidays are through a blur of exhausted tears.  I remember one Christmas eve in particular.  I was getting ready to go to work.  I was going to put my daughter to bed, go work eight hours on my feet, come home, take heartwarming pictures of the kids opening presents, dress them perfectly, take them to Christmas festivities with family, smile, be engaging, make memories, live in the moment, and record all the Christmas magic for the years to come.  Then I would take them home, get an hour of sleep, and go back to work again.  I sat down beside my daughters’ crib, and I realized that I was too weak and tired to tell her the story of the first Christmas.  My body throbbed so badly that I couldn’t form the words.  I sat down on the floor, there by her crib, in the soft glow of twinkle lights, and wept because I couldn’t tell my daughter my favorite story in the entire world.

I’m not gonna lie, I was feeling pretty sorry for myself.  That low place got way too familiar as time went on.  I found myself on the floor more and more often, too weary and in pain to take another step.  And I’d like to tell you that I always managed to pick myself back up, but the reality of chronic illness is far from that.

However, I discovered something when I was there on the floor (besides the cat’s toy stash under the fridge).  I discovered I could get stuff done from down there too.  I discovered how delighted my little girl was to have mommy on the floor with her and her blocks.  I noticed my son could talk to me about his day just as easily when I was lying on the couch cradling a heating pad. I found out that in exchange for an extra hour of video gaming, my son would sweep and mop the kitchen while I took a nap.  I realized if I went about it correctly, I could prepare dinner almost completely sitting down.

So that’s what I started doing. I figured out ways to do things sitting down.  I began timing and scheduling my day to use my energy as efficiently as possible.  I started showing my husband the new ways I had learned to do things.  I talked to other parents with chronic illness, and I discovered they, too, had ingenious ways to get things done and be good to their kids.

At the time I had a little blog where I would chronicle the funny things that happened around my house.  Through the blog I was beginning to find that if I could re-frame something unpleasant in a funny way, it was much easier to avoid the mires of self-pity that made life one long trip to the dentists’ office.  The parents around me that were as sick as me or sicker seemed to have above-average senses of humor.  They limped their way through life with determination and a steadfast refusal to take themselves seriously.  These superwomen in comfy clothes somehow got everything done.

I watched all of this from the perspective of a nurse who has spent her career learning about controlling pain. Over time, the carnival that is the inside of my brain began to slowly assemble the data it was being fed.  The new coping mechanisms for parenting through pain aligned themselves with the principles I learned in nursing.  See, nursing is another field where weak and tired humans are asked to do the impossible flawlessly without a break.  My body and mind have failed me, and I’m not able to be a nurse right now.  But I did the impossible then, and I’m still doing the impossible, just like every other CI parent on the planet.

So going back to the “energy budget” concept.  If you’re a sick parent, you have to make that budget stretch, just like every other budget in your life.  That doesn’t mean that you and the people around you have to have less.  It means that with a little creativity you can do more than you thought with less than you dreamed.

The first way to stretch that budget is to plug all the leaks.  Leaks are parts of your daily routine that use more energy than they have to.  Leaks are things healthy people usually don’t notice, because their funds are being regularly replaced the way they should be.  Parents in pain can’t afford to have even a drop of their precious strength wasted on something that no one wants or needs.  If no one notices or cares about having their clothes ironed, get yourself a bottle of wrinkle releaser and go take a nap!  If your family doesn’t want complex home-cooked meals every night, order some pizza and give them vitamins.

Leaks can also be unfulfilled needs that we tend to ignore in our bodies.  Hunger, thirst, fatigue, and pain can all cause a low-grade drain to our energy.  Be vigilant about taking care of yourself.  Medicate for pain or anxiety before going into intense situations, especially ones where your kids need you to be at your best.

Remember that although kids are whiny, instinctively selfish little people, they are also psychologically programmed to love you more than anything on the face of the planet.  There is no love more complete, more selfless, than that of a parent and child.  Let that love fill in the gaps when you can’t be perfect.  They may be disappointed with canceled plans or frustrated with the differences between their lives and the lives of their friends, but as long as you keep a constant background dialogue of love, you can get them and yourself through anything.

Be honest with your kids about your health, especially when it has you feeling down.  Hiding things from little ones doesn’t usually end well, so just be open about your struggles.  My son began asking questions when he was about eleven or twelve.  By then I’d begun to need more help with things I’d always insisted on doing myself, and he was noticing.  So while I sat with him and taught him to help around the house, I talked to him about my body and why some days it seems fine but others I have trouble getting around.  It was hard at first explaining it in a way that made sense to a kid, but I just slipped it into a hundred different conversations at every reasonable opportunity.

And it helped.  I don’t expect every kid to be like Alex.  They’ll have varying degrees of difficulty understanding and accepting the concept of chronic illness.  Remember how hard it was for you to understand the permanence and indiscriminate meddling of your illness.  But as he grew, he saw the truth of what I was telling him, and that was all he needed.  He saw that I was trying my best.  He saw that I was learning to deal with things differently.  He also saw how deeply it touched me when he helped me.  Even though he was required to do his chores just because his dad and I believe kids need chores, I thanked him often and from the bottom of my heart.  When he couldn’t do his chores, or I helped him with them, I still told him how important he was to me.  He knows my love for him isn’t dependent on what he can do for me, but there is none of the helplessness in the face of suffering that I see from other kids his age.  He’s 15 now, and let me tell you, that kid walks tall.  He has the same insecurities of any teenage boy, but he is secure in the fact that he can help the people around him.  He’s compassionate, because he knows that everyone you see is fighting a private battle.  He’s seen people criticize me, call me a hypochondriac, rail at me for using a handicapped spot, and tell me how delightfully easy my life is.  He’s also seen how hard it is for me to do the simplest things.  He’s seen the moments I don’t let most people see, moments when I give up, the times that I’ve broken down, the days I lash out at the people around me because of the pain inside me.  He’s also seen me get up, make the most of it, choose to be happy, and find the joy in life.  Kids watch us, and even if we choose not to tell them the truth with our words, we tell them truth with our day to day lives.

Encourage creative solutions.  This one is difficult, especially for someone with less energy than the average bear.  It’s also galling for a Southern girl who was taught to do everything I was told with an immediate and enthusiastic “Yes ma’am!” or “Yes sir!” But I’ve learned over the years that not only does creativity trump intelligence for problem solving, it also breeds enthusiasm and engagement.  Anyone who has contact with the up-and-coming teenagers of the current generation knows that they don’t lack intelligence or work ethic, they simply lack enthusiasm.  Well, let them solve their own problems.  I’m not kidding.  I’ve seen kids who’ve had their problems solved for them.  While they may be excellent kids and turn out fine, their first instinct when they run up against a problem is to run back to their parent.  My solution is to stand with my kids, shoulder to shoulder, and let them take the lead in working out a solution.  Rather than expecting immediate, unquestioning, and exact obedience (which, let’s be honest, isnt’ that realistic anyway), if they come to me with a different solution they’d like to try, I do what I can to encourage it.  Of course, there are situations where for safety or other considerations they need to do what I ask without negotiation.  For these times, I tell them something along the lines of “Please just do exactly as I ask.  If you think of a better way to do it, we can talk about it after and maybe try it next time, but this time just do what I’m telling you.” (or, in emergencies, saying the word “NOW!” at the top of my voice seems to work out fine).

Of course, both of my kids are arguers.  They’re really, really intelligent so they have a lot of questions, and it took me a long time to learn that arguing is how they learn.  It’s how they assert their independence, and how they find their limits.  They would be that way no matter what my parenting style, though (I know because initially I tried the “do what I say when I say it without question” approach.  The result was not a sliver less arguing and a lot more frustration and tears on all sides).  I don’t have the strength to work against their nature, especially not when I see so many good and noble traits in them. So go with the flow.  Figure out what YOUR kid needs, and put your precious energy into those specific needs.

Be patient with yourself and them.  I was never called patient in my life until I married my husband and had two kids who both have anxiety and ADD.  Did I mention my husband also has chronic pain, anxiety, and ADD?  Lord help us.  But I learned that in the battle to conserve energy, it is ALWAYS less draining to keep my cool than to lose it.  It always takes less of my finite budget to take a deep breath and let things roll off.  Slamming doors hurts my hands.  Yelling makes my muscles hurt.  Stomping around angry causes hip pain.

Please don’t think I’m some kind of level-five zen master who levitates through the house on a cloud of love and pixie farts.  I’m a lunatic some days.  But through that lunacy I’ve learned that love, honesty, and creativity can patch those energy draining holes and give you better access to what few meager resources you have.

Thanks for letting me share my story.  You can email me at thechronicmama@gmail.com or message me on Facebook under The Chronic Mama.  I’m less fluent in twitter-ese and instagram, but if you don’t mind waiting for me to remember those platforms exist and check them you can contact me there.  Twitter is @riskywords and IG is The Chronic Kitchen.  Everybody take care of yourselves.  You’re the only YOU you’ve got.

The Chronic Mama

How Getting Ready For A Night Out Has Changed.

I was recently looking through pictures on my phone and came across some pictures from a night out with some girlfriends. I had taken pictures from before I left the house of my hair and makeup, and then some pictures with my friends later in the evening. In the pictures before I look awake and ready to go. Only a short time later at the restaurant my eyes tell a completely different story. I doubt anyone else would see it but I can see the difference. In just the short time it took to get from my house to the restaurant I can see how tired I am. I can see that even though the evening out had just started I was already running low on energy and on spoons. That’s because for the chronically ill (a Spoonie) the planning and preparation for a night out starts many hours before the event begins.

Going out used to be so much fun. It was no big deal to work a 12 hour shift and then run home change clothes, freshen up the makeup and go out for drinks and be out until 2 in the morning. And sometimes be back at work at 630. I can’t even imagine doing that now. First, I couldn’t work a 12 hour shift let alone any of the rest of it. It was so much fun because my bestie might call at 8 or 9 pm and say let’s go out and I would find something to wear, do my makeup and run out the door. I never thought about what I had to do in the morning or how tired I was. My only thought would be how cute I looked and if I had enough cash for covers (okay I’m not that vain, but I was 25ish). Sadly, since I got sick that’s all changed. Going out has to be well planned and sadly is no longer a spur of the moment part of my life and now has to be well planned and prepared for. It’s amazing how something that seems like a medical condition so small can be so big and life changing.

Preparation and getting ready for a night out as a spoonie takes a lot of pre-planning and thinking. It’s not quick and easy like it used to be. When I have plans to go out for dinner or for a movie I start planing how I need to rearrange my day a couple days or even a week before. I start thinking about when I can get a nap in during that afternoon. I also have to think earlier in that week about when I should shower so I don’t use all my spoons for the day. I plan my shower to wash my hair a day or so in advance knowing that showering the day of will be so exhausting and I will risk using to many spoons. By moving that activity to the day before I save some spoons so I will have the energy needed for my time out. So for me and other chronically ill, going out for dinner or to a movie sadly is no longer a simple night out for most. It takes a lot of thinking and pre-planning. To those who are healthy this may sound absurd but sadly, it’s true.

Most healthy people and those chronically ill who aren’t in a flare probably don’t have to plan ahead and think about how they are going to get ready. They most likely don’t have to each move and each step of the getting ready process. Unfortunately I do. I have to plan each and every step of the getting ready process. I have to make sure that i am able to get ready and still have enough spoons left after getting ready to be able to enjoy the night.

Another thing I try to do is picking out my clothes beforehand. As this can be very tiring, especially if I have to try on clothing. People who are healthy wouldn’t think about this but when you are chronically ill, everything takes energy you probably don’t have to begin with. The process of putting on several different outfits to find the right one can more spoons spoons than I have available to give. And may potentially take spoons that I will need for my night out. So this needs to be done in advance so I can conserve all the energy possible.

Getting ready….. That is tiring in and of itself. And honestly makes me tired just thinking about it! I have tried several ways to get ready over the years to find the way that works best for me. Through trial and error what I have found that is best for me is to start getting ready way in advance. Several hours, in fact, before I need to leave. If I need to leave by 7pm, I will usually start getting ready by 5, or even earlier if I am really tired or in pain. That way I can have plenty of time to get ready and to include some rest periods. My arms get so tired being in the air while doing my makeup. I realize that sounds crazy, but it’s true. It never used to be a problem but now my arms become very fatigued and start to hurt after a very short time when doing my makeup. So I will do part of my makeup, and then take a break, do a little more and take another break. I will continue this pattern until I complete my whole face. Depending on how I am feeling this process may only require one break. If I am in a flare or feeling poorly it make require multiple breaks to get the job done. I also always want the make sure I give myself a good chunk of time to rest once I’m done getting ready before I need to leave. I’ve learned that I will have more energy and have a better time if I get even 10 minuets to rest before I have to walk out the door.

The process of getting ready from start to finish including shower, blow-drying my hair, styling my hair, Makeup and getting dressed that once took an hour tops. Now is a multi-step process that usually takes several hours over a two day span. Being chronically ill has changed the how I do a many things in life including how I get ready. I’ll be honest, it is not as bad as it sounds here every time I get ready. But then again some times it’s worse. I just never know how it’s going to be until I am in the middle of it. That’s something I think we all take for granted. We never think about the things we do so easily and quickly until something impedes is from doing them. I guess what I want you all to take away from this is, to not take the small things for granted. We all need to appreciate our bodies for the amazing things they can do. We all need to remember that no one knows when things may change and we may not be able to do those small things for ourself anymore.

With Love,

Amber