I am not afraid to keep on living, I am not afraid to walk this world alone

Keep on livingSo lately, I have been struggling with a lot of things like stress and being overwhelmed and being sick. I have been trying for so long to pretend that everything is fine, when in reality, it isn’t. When I got diagnosed with cancer, I was so determined to remain positive and to not be a victim, that I didn’t give myself the time to truly deal with how I was feeling and now it is all hitting at once and I am overwhelmed. I find myself bursting into tears or being prone to violent mood swings at the drop of a hat at the oddest points in time. I have been a terror to live with, but my boyfriend has been a trooper to put up with me. I know he gets me and what I am going through, however that doesn’t keep me from feeling bad for constantly dumping on him all the time.

So I have been trying to find things to keep me busy, happy and relaxed. One of my favorite go-tos for relaxation is music. I love all different kinds of music from country to pop to punk to old school rock and roll. But when I was listening to IHeart Radio the other day, I was reintroduced to a band that I hadn’t heard since high school. And oddly enough, in high school, this band and their music had gotten me through some really tough times. Seems pretty serendipitous that they would show up again when I need them most. Oh, what is the band’s name you ask? My Chemical Romance.

Now some people may be familiar with the band but others may not. They are a punk/emo/screamo band depending on which album of theirs you are listening to. I have to admit, I don’t love absolutely all of their songs and sometimes the melodies don’t always hook me in right away. But I always fall in love with their lyrics. The lyrics seem to follow the line of thinking of my heart. The thoughts that run through my head that I would never speak out loud come out through music. It gives me chills and it makes me happy. I truly believe that music can change your life. One song can remind you of true love, of the death of a loved one, of a life altering moment, and more. Music is what feelings sound like.

My Chemical Romance, and the lead singer Gerard Way, seems to really tap into true emotion when they pen the lyrics to their songs. I was having breakdown the other day and was feeling extremely sorry for myself when I heard their song Sing. Some of the lyrics just made me sit up and think twice about why I was wallowing in self-pity when I could be doing something productive.

Sing it out, boy they’re gonna sell what tomorrow means
Sing it out, girl before they kill what tomorrow brings
You’ve got to make a choice
If the music drowns you out
And raise your voice
Every single time they try and shut your mouth

Sing it for the boys
Sing it for the girls
Every time that you lose it sing it for the world
Sing it from the heart
Sing it till you’re nuts
Sing it out for the ones that’ll hate your guts
Sing it for the deaf
Sing it for the blind
Sing about everyone that you left behind
Sing it for the world
Sing it for the world

As I listened to the lyrics, I realized that I did have to make a choice. I didn’t have to be sad. I could focus on the good things in life. Like music. I could sing (even if I can’t carry a tune in a bucket). I could make the choice to be happy, not sad. The world is hard enough. I do not have to let it make me harder and colder.

 Never Take my heart

Do me a favor. Find something that means something to you. Something to wake up for. Something to breathe for. Maybe its music, maybe its art, maybe its cars, maybe its yours kids, your spouse,  your job, but let it be something. I would love to hear what you live for. If you have lyrics or songs or music that has changed your life, then by all means, PLEASE, share it with me. Share it with the world. It could save someone’s life. I know it has saved mine.ugly world

Advertisements

Wishes, Dreams and Realities

The Future

Lately, I have been struggling to write. It seems I have all of these thoughts and these emotions, but I can’t seem to put them into words. I sit down to write and just stare at the blank page, pen in hand, waiting for inspiration to strike. I can sit for hours and write nothing. It’s agonizing. What do you do when you can’t put your thoughts into words or actions? I tend to sit and stew and worry about them. But I had a realization the other day. I am having difficulty putting my thoughts into words lately because all of my thoughts seem to be about the upcoming future.

Now, the future is scary enough, but as a person with a chronic illness, it can be terrifying to think about the future, because we aren’t always guaranteed one. We could be lucky and have our illness be controlled for the rest of our lives until the day we die when we are old and grey. Or, conversely, we could be a member of the unlucky, and suffer severe symptoms and side effects from drugs that leave our bodies wrung out and we die early in life. Because our days seem to vacillate between one extreme and the other, with us never knowing which end of the spectrum our days may fall on, it is hard to plan for any kind of future because we never know how we are going to feel, if we are going to end up in the hospital, or a coffin.

Lately, my thoughts have centered around my relationship with my boyfriend and our future together. We have been together for five and a half years and I love him with everything I have. We live together and I want to be with him forever. He has been my rock and I am always safe with him. My father just told me recently that my boyfriend asked him for permission to ask me to marry him. But there’s the rub. I have cancer. What guy wants to put up with that? And though I am lucky and do not have to deal with intravenous chemotherapy and radiation, I do take tons of pills each day and I get super cranky when I don’t feel good. I work in a customer service role in Human Resources, so I always have to be pleasant at work, even on my bad days, so my boyfriend bears the brunt of my displeasure at being sick as soon as I get home. I know it isn’t fair to him so I try to temper my reactions, but it’s hard. He says he doesn’t mind, but when someone complains all the time, people eventually get sick of listening.

We have talked about getting married and about having kids over the past few years, but everything in my mind changed with my cancer diagnosis. I found out that having children is next to impossible because it will always be a high risk pregnancy that can result in intrauterine death, pre-eclampsia, eclampsia, stillborn babies and more. I used to have our future all planned out and I could see it clearly in my head. Now, that vision is fuzzy. Currently, I am in the doctor’s office every two weeks for blood work and followups to ensure that I am reacting to the oral chemotherapy correctly. I can’t travel unless I plan far in advance and get approval from my doctors. Thank god for good insurance, because my medicines alone cost close to $15,000 a month without it. With those kinds of bills, how can I save money to buy a house so we can move out of our one bedroom apartment? How could I afford kids? These medications are something I will have to take for the rest of my life.

So now, my wishes and dreams have changed. I have to focus on realities. I no longer want the extravagant wedding. I can’t afford it and honestly, all that I care about is knowing that my boyfriend and I are together. So bye bye white wedding and hello justice of the peace.I may not be able to have kids, so now I am thinking about adoption further down the road or possible surrogacy. I am not for sure planning anything beyond the next year, but I have ideas for how I want the next five years to go. Anything beyond that is blank. It seems morbid to some people, I know. My mother thinks I’m crazy. I can hear her now: “You have to plan for the future, otherwise what will you strive for?” Well mom, how about trying to control my cancer for now? I’ll worry about the future later.

And as crazy as that may seem, I feel almost….well, free. I am living in the moment more than I ever have and not stressing over the future or what other expect of me. I am no longer concerned with how others view my life. It doesn’t matter if anyone else approves of me, except myself. I am not worried about my career, or grad school, or saving tons of money to buy a house. It just isn’t as extremely important anymore. What is important is working to the best of my abilities on good and bad days, in whatever I am doing, whether its work, school, or relationships. All I can do is do my best and worry about getting through today to get to tomorrow. And today is a great day. Its beautiful outside with the sun shining bright and the smell of fresh cut grass. I have a good job, a fantastic boyfriend, a loving family, and great friends. The future is far off. I must admit, I am loving the now.

Things I have learned

life

After the numerous health issues I have had for the past six years, especially a cancer diagnosis this past Thanksgiving, I have decided to list a lot of the important lessons I have learned. I feel like everyone can use a reminder of the good things that can come out of bad situations. I know on the days where I really struggle, these learned lessons are great reminders that it’s just a bad day, not a bad life.

I’ve learned that you cannot make someone remain your friend. All you can do is be the best friend possible. If they decide that they can’t handle you at your worst, they don’t deserve to be around for your best.

I’ve learned that no matter how much I want things to change, some things are just out of my control. (Especially the removal of certain tv shows from Netflix…I’m so disappointed)

I’ve learned that it takes years to build up trust, and only seconds to destroy it.

I’ve learned that no matter how good a friend or family member is, they’re human and they are going to hurt you occasionally. Forgive them.

I’ve learned that it’s not important to have material things in your life, but it is important to have people that love you and that you can trust in your life that counts.

I’ve learned that you should never ruin an apology with an excuse.

I’ve learned that charm and good looks can only get you so far. Knowledge and wit will get you farther.

I’ve learned that you can’t compare yourself to others, because no one has walked in your shoes. No one in the world has had the exact same experiences as you.

I’ve learned that it only takes a single moment to break your own heart.

I’ve learned that it’s taking me a long time to become the person I want to be. I am not there yet, but I will be there one day.

I’ve learned that you should always tell someone you love them as soon as you know. It may be the only chance you get to tell them.

I’ve learned that you can keep going long after you think you can’t. Don’t give up.

I’ve learned that we are responsible for all of our actions, no matter how we feel. Don’t let feelings influence all of your actions. You may regret them.

I’ve learned that you can only control your own attitude, not that of other people. How you react to a situation shows who you are. How they react shows who they are.

I’ve learned that passion is not always necessary in a relationship, because it fades over time. It’s better to fall in love with your best friend, because when the passion is gone, you have the comfort, love and friendship of another person to fall back on.

I’ve learned that heroes are the people who do what has to be done when it needs to be done, regardless of the consequences. While our service men and women are most certainly heros, they are not the only ones in the world. Sometimes a hero is simply a little kid standing up for another kid who is getting bullied.

I’ve learned that money doesn’t buy happiness. It can help, but there are so many stories of billionaires and celebrities being miserable even when they have all the money in the world. Money creates greed and it destroys relationships.

I’ve learned that my best friend and I can do absolutely nothing, not even talk, and still have the best time.

I’ve learned that sometimes the people you expect to kick you when you’re down will be the ones to help you get back up. And those that you expect to help you up are the ones that walk away after you fall.

I’ve learned that sometimes when I’m angry I have the right to be angry, but that doesn’t give me the right to be cruel to anyone else.

I’ve learned that true friendship continues to grow, even over the longest distance. Same goes for true love. Long distance isn’t for the fearful. It is for the brave.

I’ve learned that just because someone doesn’t love you the way you want them to doesn’t mean they don’t love you with all they have.

I’ve learned that maturity has more to do with what types of experiences you’ve had and what you’ve learned from them and less to do with how many birthdays you’ve celebrated. I know people that are mature at 21 and others who are completely immature at 75. (talking to you dad…. (: )

I’ve learned that you should always tell children that their dreams are obtainable. Even if you don’t truly believe it, because no one should have their hopes squashed. Let them retain their innocence for as long as possible. The world is already hard enough to handle.

I’ve learned that your family isn’t always biological. Sometimes, they aren’t worth your time. Pick the people you want around you, and they will be your family.

I’ve learned that I have to forgive myself for the things I regret. It isn’t someone else’s job to make me happy.

I’ve learned that no matter how bad your heart is broken the world doesn’t stop for your grief. Even if you feel like the world has stopped spinning for you, you must remember that everyone else keeps on moving.

I’ve learned that our background and circumstances may have influenced who we are, but we are responsible for who we become.

I’ve learned that it is far better to be rich in love and friendship than it is to be rich in monetary ways.

I’ve learned that just because two people argue, it doesn’t mean they don’t love each other. And just because they don’t argue, it doesn’t mean they do.

I’ve learned that all things in life constantly change – friendships, animals, school teachings…etc.

I’ve learned that sometimes, secrets can break you. It’s not always smart to always want to know everything.

I’ve learned that two people can look at the exact same thing and see something totally different. Art is a perfect way to determine this.

I’ve learned that no matter how you try to protect your children, they will eventually get hurt and you will hurt in the process.

I’ve learned that even when you think you have no more to give, when a loved one asks for help, you will find the strength to give more

I’ve learned that credentials on the wall do not make you a decent human being. Case in point, some doctors are horrible, and others will bend over backwards to show you how much they care.

I’ve learned that the people you care about most in life are what matters. Not material goods. Focus on relationships, not buying things.

I’ve learned that it’s hard to determine where to draw the line between being nice and not hurting people’s feelings, and standing up for what you believe.

I’ve learned that its hard to determine which bridge to cross and which to burn. You will make mistakes with this. It’s never easy.

I’ve learned that you can be in a room full of people and still feel completely and utterly alone.

I’ve learned that we need to go with the flow. Trying to control everything just leads to stress and worry. It is detrimental to your health.

I’ve learned that life is about the journey, not the destination. Think about it, the destination is death. Life is for the living, embrace all aspects of it.

I’ve learned that people deserve a second chance. But no more than that. Remember that saying “Fool me once, shame on you. Fool me twice, shame on me? Second chances are great. Third, fourth, fifth and so on chances are mistakes.

I’ve learned that being manipulative may get you the things you want, but it will not give you the respect and love of others.

I’ve learned that helping others helps me. Not because it makes me feel better about myself, but because it gives me time to stop worrying about my own struggles.

I’ve learned that having low expectations can be good because sometimes high expectations can never be reached and then you will always be disappointed.

I’ve learned that honesty is freeing and as a result, you don’t lie. When you don’t lie, you don’t have to worry about remembering the lies you told.

I’ve learned that being brutally honest doesn’t always win you friends, but people will respect you for it.

I’ve learned that I have to live now, not worry so much about how I will live in the future. The future is not guaranteed.

I’ve learned that not everyone understands sarcasm. Be careful about how you say things.

I’ve learned that being an asshole gets you no where in life. It just makes it so that you are forever alone.

I’ve learned that you need to consider all advice given to you. If you don’t want advice, don’t ask for it, especially if you won’t even consider it. People will eventually get fed of with giving it to you.

But most importantly, I’ve learned that I need to change how I view failure. Failures help make you great. As long as I am breathing, I am not failing. I am simply finding ways to do things that do not work.

You are more than beautiful

So, cancer sucks. Diabetes sucks. Lupus stinks, Multiple Sclerosis is horrible, and fibromyalgia is miserable. All incurable diseases are overwhelming, depressing, and heartbreaking. And sometimes, the disease itself isn’t even the worst part! Often times, the side effects from the medication used to treat the disease can be worse than the symptoms of the disease itself. The side effects can make people feel worse than normal, make them feel useless, unattractive, and helpless. This can lead to severe depression and anxiety which can affect all of the relationships in our lives, both romantic and platonic.

But even through the horrible side effects, the miserable diseases, the bad days, the worse days, and the good days, there is one thought that must remain. YOU MATTER. YOU ARE A GIFT TO THE WORLD.

beautiful

 

Even on the worst days, where it hurts to breathe, and you don’t want to move for fear of pain so overwhelming you could pass out, you are beautiful. Even on bad days where your hair is falling out, your body aches and you feel like no one could ever find you attractive, you are beautiful. When you look in the mirror and can’t find anything to love, trust me, there is someone out there that will love all of your faults, flaws and imperfections. Perhaps its a family member, a friend or a significant other, but someone will love what you don’t. But please remember that you don’t need these people to be strong. You are strong all on your own. You can deal with pain and irritations that would put the average person in the hospital. Your tolerance exceeds anything normal, but you survive. You keep pushing every day. Even when it scares you and you want to crawl under the covers in bed and hide for years, you are courageous.courage

 

Courage is not overcoming something, or acting like it doesn’t hurt, like it doesn’t bother you. Courage is defined as the ability to do something that frightens you or strength in the face of pain or grief. Simply waking up in the morning with the determination to get through the day to wake up the next morning is a courageous act. This is true strength, true beauty. But courage also allows you to feel fear, to feel anger, and to feel depression. Do not hide from the emotions. Embrace the release that crying can bring. Embrace the fear, for that is what will allow you to conquer it. Being afraid doesn’t mean you are inferior or weak. It means that you recognize that there is something bigger than you that you may not understand or know how to fight, but courage is trying to understand and fight anyways.

Do not let anyone tell you how you should feel. Do not let anyone tell you how to heal your own heart. Do not let anyone judge you for how you handle your illness. As long as you are breathing, you aren’t failing. Remember that. You can do this. I believe in you. You can fight, you can do more than exist. Don’t worry about how others may react to you. Just be authentic. Be 100% you. No one else in the world can do that. That is how you stay true to yourself and that makes you beautiful. It makes you an inspiration and a work of art in a world of monotony. Be unique. Be eccentric. But above all, be you. Don’t change for anyone.Don’t let anyone make decisions for you. Choose your own path. And remember that even though you may suffer from an illness, that doesn’t change who you are as a person. You are not your disease and your disease is not you. If someone in your life believes that, cut them out of your life, because you don’t need that kind of negativity. The world is already a scary place, but negativity just makes it worse. Try and surround yourself with beauty. It will get you much farther than pessimism and cynicism will. Continue to be courageous, strong and beautiful. Because you are, and there is nothing anyone can say or do to change that. You are not alone, and you are not worthless. You matter. You are more than beautiful. You are a star.

Exercise and Chronic Diseases

healthy

Recently, I have decided to try and lose some weight and get in shape. It has been my goal for a few years, but since my doctor told me that losing weight and getting in shape could help control my Essential Thrombocythemia (a rare blood cancer), I have hit the ground running. Not literally, because lets be honest, I am only in shape if you think round is a shape and I don’t run unless someone is chasing me. I have always struggled with my weight, and although I was very active in grade school through high school, life got busy and I became less active over time.

In high school I was involved with the Tennis Team and I went bowling. In grade school I did tennis and cheerleading. All of these physical activities allowed me to maintain my weight and stay relatively healthy. Unfortunately, I have also had severe asthma since birth. I have struggled to breathe often, and I was in an out of hospitals on almost a monthly basis for the first six years of my life. I used to wake up in the middle of the night when my lips were turning blue from lack of oxygen. Thankfully, with the help of the most wonderful allergist/doctor I have ever met, I was able to start being active in the middle of grade school. My asthma was mostly under control through medication and because I built up my lung strength through these sports and activities.

Sadly, I got mononucleosis mid-way through my senior year of high school and was forced to stop playing tennis and bowling. By the time I got well again, it was time to move away for college. I didn’t join any teams or sports, even though I should have, because I was miserable at the school I was at and only wanted to move home. At the end of the first year of college, I did transfer home, and because I commuted to school, I did not join sports. After that, the excuses as to why I didn’t get active kept piling up and life moved on.

Now, I have been relatively inactive for about 7 years, with the exception of riding my bike occasionally and swimming in the summer. My lungs aren’t as strong as they used to be, and I have virtually no muscle. So what is a girl to do when she wants to exercise and get in shape, but has an asthma attack every time she power walks? I hit the internet to do some research. One of the best websites I found was from the Mayo Clinic (http://www.mayoclinic.org/healthy-living/fitness/in-depth/exercise-and-chronic-disease/art-20046049). The website encouraged me to talk to my doctors about what activities would be beneficial to my health and which ones would be detrimental. So off to the doctor’s I went to inquire about exercise and ideas on how to supplement that with nutrition.

Now, since my diagnosis of cancer, my oncologist has been wonderful. He really knows his stuff and doesn’t wait around for things to get worse. He is super proactive and I couldn’t ask for a better doctor. So when I approached him about weight loss in relation to my cancer, he gave me some really good ideas and information which didn’t apply just to my cancer, but also took into account my asthma and migraines (a side effect of the cancer). His suggestion was this:

  • Start slow by walking, doing some planks, leg lifts, crunches and sit ups at home. Do this for at least two weeks before you start working out at a gym.
  • Drink lots of water; at least 64 ounces of water five days a week
  • Try juicing and eating more naturally, meaning no fast food and I have to cook for myself.
  • Once you reach the gym work out level, walk on a treadmill before you start using weight machines. Make sure you walk at a brisk pace for at least 15 minutes, but do not run yet, as you will get an asthma attack.
  • Try yoga or pilates for endurance and strength, as well as flexibility. This can help build your muscles enough that it relieves some lower back pain (also a side effect of cancer)
  • Use your inhaler about 15-20 minutes beforeyou start your work out.
  • Choose realistic goals; while your ultimate end goal may be to lose 50 pounds, focus on a smaller short term goal and celebrate once you reach it. Remember that this is a marathon, not a sprint. You don’t want to lose weight to fast or in an unhealthy manner.
  • Try eliminating unnatural sugars, preservatives and processed foods from your diet. Do not try and do this all at once, as you can stress yourself out. Pick one thing to get rid of and start there. Once you have achieved that, try adding something else to get rid of.

complaining

My doctor also suggested that I look into the low impact exercises to reduce fatigue and to focus on the health benefits of regular exercise to keep me motivated. Cardiosmart.org gave me some great facts about the benefits of regular exercise:

  • It reduces cholesterol.
  • It lowers your blood pressure.
  • It makes your heart stronger and healthier so it can send more blood and oxygen all through your body.
  • It helps you control your weight.
  • It builds muscle strength so you can be more active.
  • It may reduce your need for medicines. This can lower the cost of caring for your disease.
  • It reduces stress and lifts your mood.
  • If you have diabetes, exercise can help you control your blood sugar.
  • People with chronic diseases often find that exercise reduces their symptoms.
  • It may also help them avoid depression, which is common in those with long-term diseases.

(https://www.cardiosmart.org/~/media/Documents/Fact%20Sheets/en/tb1603.ashx)

The website also gave me some great tips on how to work out safely:

  • Start out slowly. Over time, you will become able to do more.
  • Watch for signs that you are doing too much. You are pushing yourself too hard if you cannot talk while you are exercising. If you become short of breath, nauseated, or dizzy, or if you have chest pain, stop, sit down, and rest. If these symptoms do not go away, call your doctor.
  • If you feel “wiped out” the day after you exercise, exercise more slowly or for a shorter time until you can work up to a better pace.
  • If your medicines change, ask your doctor whether you should continue your exercise program. New medicines can affect how you feel when you exercise.
  • Adjust your exercise program if it is interrupted for more than a couple of days. Gradually increase to your regular activity level.
  • Talk to your doctor or a certified fitness professional about your progress. He or she may be able to help if you have problems.
  • Do not exercise outdoors when it is very cold, very hot, or very humid. When the weather is bad, exercise indoors or walk at a mall.
  • Learn about the risks of any new exercise you start. Use proper form. Take lessons if you need to.
  • Avoid holding your breath when doing exercises such as push-ups and sit-ups. Also avoid heavy lifting.
  • Do not take hot or cold showers or sauna baths right after you exercise. Very hot or very cold temperatures can be dangerous.
  • Do not exercise during times when your disease is not under control unless your doctor has told you it is okay.

A research paper I read gave some stunning facts about chronic diseases such as (http://jap.physiology.org/content/98/1/3#sec-20):

  • Cardiovascular diseases [i.e., coronary artery disease (CAD), hypertension, stroke, and heart failure], Type 2 diabetes, metabolic syndrome, and cancer are the leading killers in Westernized society and are increasing dramatically in developing nations(Diet, nutrition, and the prevention of chronic diseases. World Health Organ Tech Rep Ser 916: i–viii,1–149, 2003.)
  • Recent data from the Centers for Disease Control document that cardiovascular diseases, various forms of cancer, and diabetes combine to make up 70% of all deaths in the United States(Arias EAnderson RN, Kung HC, Murphy SL, and Kochanek KD. Deaths: final data for 2001. Natl Vital Stat Rep 52: 1–115, 2003.)
  • Recent data estimate that physical inactivity and poor diet caused 400,000 deaths in 2000, ranking second only to tobacco, and that it is likely that inactivity and diet will soon rank as the leading cause of death in the United States(Mokdad AHMarks JS, Stroup DF, and Gerberding JL. Actual causes of death in the United States, 2000. JAMA 291: 1238–1245, 2004.)
  • It has been estimated that 50% of all deaths in the United States are due to preventable causes(McGinnis JM and Foege WH. Actual causes of death in the United States. JAMA 270: 2207–2212,1993.)
  • Consumption of red meat is associated with cancers of the colon, breast, and prostate, as charbroiling and frying meats at high temperatures forms heterocyclic amines, which are potent carcinogens(Strickland PTQian Z, Friesen MD, Rothman N, and Sinha R. Metabolites of 2-amino-1-methyl-6-phenylimidazo(4,5-b)pyridine (PhIP) in human urine after consumption of charbroiled or fried beef. Mutat Res506–507: 163–173, 2002.

So, with all of that information, I am bound and determined to get in shape. I will help myself to deal with my cancer, my asthma and my migraines, by focusing on being healthy (NOT SKINNY). Exercise and a proper diet will help me feel better physically, mentally and emotionally. I do not want to be obese. I do not want to die from my chronic cancer. I want to live, and I am determined to do it. Anyone can do it, and if anyone needs support or motivation, I am only an email or comment away 🙂

Invisible Illnesses – Incurable Diseases

faking being well

Those with incurable diseases with little to no outward appearing symptoms will completely understand this icon. When you feel horrible 85-99% of the time, but it doesn’t show externally, it can be exhausting. It feels like you wear a mask daily because no one understands. No one seems to know that you struggle to get through each and every day. You tend to lie a lot to those around you, because no one wants to hear you complain all the time. The most common lie is “I’m Fine.” You have to be fine when you don’t look sick, or people will unnecessarily judge you. Common stigmas that people with invisible illnesses and incurable diseases face are ‘You don’t look sick.’ ‘You look fine to me.’ ‘I think (he/she) is faking it.’ ‘Just get over it, it’s all in your head.’ These are just examples of things we can hear and face every day.

But the fact of the matter is, it’s not all in our head. The struggle is real. Here are some staggering statistics and facts from the website http://www.invisibleillness.com, where they seek to spread awareness about invisible illnesses.

  • Nearly 1 in 2 Americans (133 million) has a chronic condition.
  • By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.
  • That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million. 
  • Sixty percent are between the ages of 18 and 64 
  • 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases
  • In the United States 4 in 5 health care dollars (78%) are spent on behalf of people with chronic conditions. The Growing Burden of Chronic Disease in American, Public Health Reports, May June 2004 Volume 119 Gerard Anderson, PhD
  • Approximately 96% of people who live with an illness have an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau)

Invisible illnesses are often chronic conditions, but they range in intensity from moderate to severely terminal. Some examples of invisible illnesses are: chronic migraines, chronic backaches, lupus, fibromyalgia, diabetes, HIV/AIDS (which does not always show symptoms for the first few years), schizophrenia, heart disease, cancer, asthma, chronic obstructive pulmonary disease, and more. Many of these diseases are extremely prevalent in today’s society. There are many different types of cancer, as well as their individual research groups, and HIV/AIDS has had tons of exposure in the media. But these types of chronic conditions can come with external symptoms later on, some of which are created by medicinal side effects.

Look sickIt is easier for people to feel sympathy for those that truly may look sick or disabled, such as someone with the flu who is throwing up, or someone with a broken leg in a cast, or someone who has lost their hair due to chemotherapy and radiation. But for those of us who have invisible illnesses such as joint/muscle aches, migraines, blood disorders, diabetes and more, without the external symptoms, people lack the ability to understand. Sometimes they simply don’t want to understand. Illnesses with visible symptoms can garner national attention to raise awareness, but often illnesses without symptoms receive little to no attention. However, these illnesses are just as important. The Invisible Illness Week website tells us why:

  • The divorce rate among the chronically ill is over 75 percent. National Health Interview Survey
  • Depression is 15-20% higher for the chronically ill than for the average person – Rifkin, A. “Depression in Physically Ill Patients,” Postgraduate Medicine (9-92) 147-154.
  • Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides; Mackenzie TB, Popkin MK: “Suicide in the medical patient.”. Intl J Psych in Med 17:3-22, 1987
  • and more than 50% of these suicidal patients were under 35 years of age. Michalon M: La psychiatrie de consultation-liaison: une etude prospective en milieu hospitalier general. Can J Psychiatry (In French) 38:168-174,1993
  • Chronic diseases—heart disease, cancer, chronic obstructive pulmonary diseases and stroke—are the leading causes of death in the United States. CDC, National Center for Chronic Disease Prevention and Health Promotion. (2010)
  • Seven of every 10 deaths in the U.S. are caused by chronic conditions; heart disease is the leading cause of death among both men and women, followed by cancer and chronic obstructive pulmonary diseases—diabetes is seventh. CDC, National Center for Chronic Disease Prevention and Health Promotion. (2010)
  • Chronic, disabling conditions cause major limitations in activity for more than one of every 10 Americans, or 25 million people. CDC, National Center for Chronic Disease Prevention and Health Promotion. (2010)

Sadly, chronic pain and illnesses can’t simply be fixed by taking a pill {Professor Stephen Gibson, President of the Australian pain society). And because pain often shows no physical signs, people including health professionals will often not believe sufferers are in pain which is one of the reasons they are at such high risk of depression, anxiety, social isolation and relationship breakdown (Coralie Wales, President of Chronic Pain Australia). That means that everyone is fighting some sort of battle we know nothing about. And yet society still doesn’t seem to understand that judgement and hatred should not be shared based on something you know nothing about. Don’t yell at the person parking in the handicap space who doesn’t have a wheelchair or cane. You have no idea what is going on in their body. Don’t ask them to just get over it. Don’t tell them it is all in their head, or that they should be ashamed of themselves.

Everyone reacts to illnesses differently, and although some may share similar symptoms, no one person is the same, so why should their reactions to illnesses and medications be the same? We need to spread the word about the ‘invisible ills’ and speak loudly about tolerance for others. By educating ourselves and those around us, hopefully we can inspire more research, and more tolerance for others. Please don’t assume that someone is fine, just because they say they are or because they look ‘normal’. It very well may be a mask that they are wearing, even though they may feel like just breaking down.

Often, I personally struggle with the mask I wear. I go to work and out with friends and my boyfriend, and I get exhausted easily and lack strength in my muscles. It makes it hard to do certain things. But I always smile and say that I am fine. Even when I am not. It’s easier to lie than it is to explain that I physically hurt almost 100% of the time, or that I would prefer to sleep for about 18 hours straight every day just so I can feel like I have a little bit of energy when I am awake. Lying is easier than saying I just want to cry myself to sleep some nights because I feel completely alone, even though others have the same disease that I have. Every battle is different, and you can’t win them all. Sometimes I get home after work and burst into tears, even when I have had a ‘good’ day. Well, a good day for me that is. And the tears come because I am unused to having too many ‘good days’. Some Saturdays I sleep almost all day after going to bed the night before. I waste my weekend, but at least I feel rested for the first time all week. Other days I lay in bed or sit at my desk, biting my tongue because I hurt so bad and the medicines don’t help unless they knock me out. My temper has gotten shorter, and some days I am angry at the universe. And yet I get up every day and attack the day again, even knowing that I have to put on my mask. I don’t give up, because giving up isn’t an option for me. I want to do more than just exist. I want to be more than my illness. I want to have a social life. I want to live.

So, although it takes courage, and I try again, each and every day to have a good day. And I am not dying, so they are all good days. The pain, stress, irritations, and complications that I have on bad days remind me that I am still breathing. And if I am still breathing, I am not failing. I can do this. We can do this. Don’t become a victim. Don’t victimize others. Make your life worth living. It will be hard, but I know it will be worth it.

Brain Tumor Diagnosis….

If you can, please help this man and his family. Tumors of any kind lead to expensive treatment and it takes so much support from the loved ones around you.

Ray Ferrer - Emotion on Canvas

Hi Friends and Fans of Ray! This is his wife, Rhian Ferrer….
Tuesday morning I found Ray in bed having a seizure (he has never had one before) I brought him to the hospital and he is stable but has a massive baseball sized tumor in/on his brain.  He will be undergoing surgeries, radiation and chemo therapy in the upcoming months.  

I have set up a Go Fund Me page for Ray.

Here is the link. http://www.gofundme.com/rayferrer

Please share and be sure to check out the links on the page, including the Etsy link where you can get get great art prints of his that will also help contribute!

From the bottom of our hearts, we thank you and our family thanks you. He holds his fans in such high regards and will be updating everyone as things progress.

View original post

Depression – A room in Hell with only your name on the door.

Depression is such a cruel punishment. There are no fevers, no rashes, no blood tests to send people scurrying in concern. Just the slow erosion of the self, as insidious as any cancer. And, like cancer, it is essentially a solitary experience. A room in hell with only your name on the door. ~ Unknown~

That is possibly the most appropriate description of depression that I have ever heard. People suffer from depression every day, and yet for many people, it isn’t recognized as a ‘true’ illness. Many people who do not suffer from depression do not understand the struggle that those with depression face. Often times, people with depression are unfairly given labels such as ’emo’ or ‘drama queen’ and are often told to ‘just cheer up already’ or ‘get over it.’ These phrases and terms do not help and often only compound the problem.

Did you know that Major Depressive Disorder (also known as major depression) affects approximately 14.8 million American adults, or about 6.7 percent of the U.S. population age 18 and older in any given year (http://www.adaa.org/about-adaa/press-room/facts-statistics). That’s just in the United States, not including anyone who lives in any of the other 195 countries on this planet. It’s also the leading cause of disability in the U.S. for people ages 15 to 44 (http://www.adaa.org/about-adaa/press-room/facts-statistics). Depression is also considered a worldwide epidemic, with 5 percent of the global population suffering from the condition, according to the World Health Organization (http://www.everydayhealth.com/health-report/major-depression/depression-statistics.aspx).

With statistics like those, it’s hard not to feel overwhelmed. As I have suffered from clinical depression for many years, I have decided to help those without depression learn a little about the disorder and how it can affect someone. With education comes knowledge, and with knowledge, we can change the world.

depression

In order to begin to understand depression, we must realize that it is not a singular disorder. Just like cancer, it has many different types, and can also often come in combination with many different disorders. Major depression is defined as a severely depressed mood that goes on for two weeks or more, interfering with a person’s daily functions. Other types of depression include:

  • Dysthymia. This is a type of minor but chronic depression that lasts two years or longer. Dysthymia affects about 1.5 percent of American adults.
  • Postpartum depression. This form of depression affects about 10 to 15 percent of women shortly after childbirth.
  • Seasonal affective disorder (SAD). This type of depression usually occurs during winter months and is probably caused by lack of natural sunlight. SAD affects 4 to 6 percent of Americans and is more common the farther north you live.
  • Bipolar disorder. This condition involves moods that cycle between depression and extreme excitability, called mania. Bipolar disorder affects about 2.6 percent of American adults.
  • Psychotic depression. This type of depression is the most severe form and includes breaks with reality, such as hallucinations or delusions. It is less common than other forms of depression; according to one study, psychotic depression occurs in about 5 percent of people who suffer from major depression. (http://www.everydayhealth.com/health-report/major-depression/depression-statistics.aspx)

According to the National Institute of Mental Health (NIMH) depression can increase the risk for another illness and dealing with an illness may lead to depression. It is a vicious cycle. NIMH also collected some of these terrifying statistics:

Depression affects:

  • More than 40 percent of those with post-traumatic stress disorder
  • 25 percent of those who have cancer
  • 27 percent of those with substance abuse problems
  • 50 percent of those with Parkinson’s disease
  • 50 to 75 percent of those who have an eating disorder
  • 33 percent of those who’ve had a heart attack

(http://www.adaa.org/about-adaa/press-room/facts-statistics)

Depression does not just affect those who have been diagnosed with a curable, incurable or terminal disease. In fact it is not uncommon for someone with depression to also suffer from an anxiety disorder or vice versa. Nearly one-half of those diagnosed with depression are also diagnosed with an anxiety disorder (http://www.adaa.org/about-adaa/press-room/facts-statistics).

Depression is also involved in more than two-thirds of the 30,000 suicides that occur in the United States every year .
(http://www.everydayhealth.com/health-report/major-depression/depression-statistics.aspx).

So… does your brain feel full of facts and knowledge yet? Depression affects millions of people all over the globe. It is not something to be swept under the rug. Acceptance of those with depression and anxiety disorders has grown in leaps and bounds in the past fifty years, and it will continue to expand. Taking care of ones mental health is just as important as taking care of ones physical health. But people need to know that they are not alone. The struggle is real. What you are feeling isn’t wrong, and it isn’t just in your head. There are actual clinical reasons for feeling the way that you do. Medications can help ease some of the depression, but it isn’t a cure. Therapy and counseling helps enormously as well, but some people can be scared of it, especially if they have a bad experience with a therapist or counselor.

Please do not give up. You are important. Your talents, gifts, and intelligence are not a waste. Do not let this beat you. Realize that you are stronger for suffering from depression. I know it is hard to understand that some days, but you really are. The bad days with depression help you realize how great the good ones are. Living with and overcoming depression is an uphill battle, but you are not alone. There are so many others in the world who feel the same way, who think the same way, who are going through similar things. This doesn’t have to be a solitary experience. Reach out, ask for help. You are not weak and you definitely are not less of a person by asking. Sometimes, just knowing that there is another human being who gets it, is enough to get you through the day. Even on those days when it seems like the entire world is against you, and all you want to do is give up. I am begging you, hold on. Know that I am here. I have been there. I am there. If ever I can help, all you need to do is ask. And thankfully, I am not the only one.

Depression Hotline (212) 673-3000 (http://samaritansnyc.org/24-hour-crisis-hotline/)

National Suicide Prevention Lifeline 1 (800) 273-8255 (www.suicidepreventionlifeline.org)

Cheers to the miles it took to get here.

cheers tattoo

In order to tell my story, I have to start where all stories begin, at the beginning. My mother and father raised me in a suburb of Cleveland, Ohio and I was an only child. I had a happy childhood for the most part, barring my childish tantrums when I didn’t get my way. But I never had to worry about not having a roof over my head or food in my belly. We weren’t rich, but we were comfortable. Life was good. But as it always does, the good comes with the bad. I was teased from time to time over the years, which would often send me home in tears or in a rage where I would scream into my pillow, but it was manageable until the eighth grade.

At this point in my life, I had become the ultimate target for bullies. I had glasses, curly hair and this year I got braces. I heard all of the unoriginal insults, ‘Four-Eyes’, ‘Metal-Mouth’, ‘Brillo Head’, and so on and so forth. The constant onslaught hurt, but I was managing until I started to be sexually harassed by a classmate. It never went past just comments, but the words hurt. All of a sudden, my torment had taken on a new element that I didn’t understand and without understanding, I couldn’t process it, couldn’t handle it anymore. So in the middle of eighth grade I started cutting. Small incisions on my legs, the insides of my thighs, the undersides of my arms. Never deep enough to scar, but always enough to bleed. I started wearing long sleeves and becoming socially withdrawn. Shortly after, I was diagnosed with depression and was started on an anti-depressant. But the taunting at school continued and the pills didn’t help, so the cutting continued. It was the only thing I could control when it seemed that everything was spilling out of my hands. I could control how much I cut and how often and how deep. I could even control if anyone noticed. I got really good at hiding it. I became an expert at faking emotions because I had begun to feel numb inside.

The depression and cutting continued through high school and into college, where I went away from home for the first time. I cut when I faced new situations that I was afraid of, I cut when I was tired, I cut when I was hurt, I cut when I was angry, and I cut when I was numb. In my freshman year of college, my roommates caught me cutting and called my parents. Between the parents and my roommates, I was convinced that it was time for me to get help. I had been cutting for almost seven years at this point. I found a wonderful therapist on campus that helped me slow the cutting and begin to build up my own self-esteem. The cutting didn’t stop completely that year, but it got better. I came to rely on that razor blade less and less. By the end of the school year, I had come to rely on myself enough to realize that moving back home would be my best option.

I moved home, found a new therapist, and continued dealing with the anxiety and depression without using cutting as an escape. I finally found an anti-anxiety/anti-depression medication that helped regulate my moods, and helped me deal with life a little better. I finally stopped cutting completely by the middle of my sophomore year of college. Things were finally looking up. I was hanging out with friends again, becoming more sociable, my grades were improving, and I was happy with where my path in life was taking me. Unfortunately, the medications aren’t perfect, and I started building up a tolerance for it, so my doctor and I had to increase my dosage a few times until I graduated college. During that time, my moods would spike and drop randomly, like a heartbeat. I had super highs and extreme lows. But I finally graduated with a Major in Business Administration and Management in August of 2012. The economy, as you know, has been swirling down the toilet for a while, so when I graduated I was unable to obtain a full time job in my field. I wanted to get into HR. I could only find part-time work at $9.00 an hour. I couldn’t even pay my bills on that. I finally lucked into my dream department with a customer service job, but it required me to move to Dallas, Texas.

So in February of 2013, I moved a little over 1,200 miles away from everything I had ever known to stay with my aunt and uncle for three months until I had saved up enough to get my own apartment. And on May 1, 2013, I was able to move into my own place. I was so proud of myself. Up until that point, I had had my parents help all my life whenever anything would go wrong. But this time, I had made the move, gotten the job, paid for the apartment and all of the furnishings all on my own. I paid all my own bills and didn’t have to rely on my parents for a single thing. It was both thrilling and frightening. I finally felt like a real adult. I even had health insurance of my own! I didn’t know what to do with myself!

My parents made the drive down to come to visit me in the summer of that year and brought along my four pound Yorkie-mix, Charlie to live with me. I was so happy to be independent, my parents were proud of me, and I had my dog with me.  I had left my boyfriend of over three years back in Cleveland, but we were doing the long distance thing until he could move down to live with me. Life was good again. Until I began to get sick in October of 2013.

At the beginning of October I got what doctors diagnosed as a sinus infection. But this was unlike any other sinus infection I had ever had. Now, I have had asthma and allergies since birth, so I am very familiar with all kinds of respiratory infections and sinus infections. This one came with blurred vision, dizzy spells that would make my knees give out, and severe migraines. After I finished the first round of antibiotics and steroids, I went back to my doctor because I wasn’t feeling any better. I got a second round of drugs to fight the infection. At the end of this round of drugs I was still sick and I had a migraine so bad that I ended up in the Emergency Room. I got a third round of antibiotics and an CT Scan of my head where doctors said I had a really bad sinus infection. No shit, Sherlock. Finally, after seven weeks and three rounds of drugs the sinus infection cleared up, but the migraines, blurred vision and dizzy spells continued.

After the first of the new year, I was sent to see a neurologist. She ordered a spinal tap, diagnosed with me with Intracranial Hypertension, gave me medication and sent me on my way. The meds didn’t help resolve any of the symptoms and they just kept increasing in frequency and intensity. I tried talking to my neurologist, but she kept telling me the medication hadn’t kicked in yet. After five months of that nonsense, I finally went to see another neurologist that had been recommended to me by a co-worker. After another spinal tap in June that went horribly wrong and resulted in 5 trips to the emergency room in 6 days and then a three day admittance, it was determined that I did not  have intracranial hypertension, but there was no known reason as to why I was having as many as 6 migraines a day. My new doctor believes that I had gotten into a migraine loop, which she got me out of during my three day stay at the hospital. My boyfriend moved in shortly thereafter to take care of me.

I could finally function, but still had the blurred vision and dizzy spells. We tried new medicines and new therapies for months, but nothing seemed to work. In October of 2014, a full year after I had begun getting sick, my boyfriend and I discovered that our air conditioning vent was completely filled with mold, because he had begun getting sick, causing him to lose his job. We got the mold cleaned out and a new air conditioning unit installed, and my boyfriend began to get better. I however began to get worse. I was getting night sweats, severe fatigue and no appetite. I dropped about ten pounds in two weeks. I went to the doctor thinking I had mononucleosis for a second time (the first being in high school) but he thought it was a sinus infection. Again. After I insisted that he do blood work for me, he called me three days later insisting I get a follow up with an oncologist as soon as possible. My platelet count was extremely elevated.

After more testing and meeting with the oncologist, it was determined that I have a Myeloproliferative Neoplasm called Essential Thrombocythemia. It is a rare blood cancer, usually occurring in women over the age of 55, that is often called a chronic form of leukemia. I was told that it is not curable, but it is treatable. Cue the depression.

cancer

I started hearing all these big words I didn’t understand and didn’t want to understand. I couldn’t function for a few days. I was like a zombie. They started me on oral chemotherapy pill that caused more problems and I was miserable. I was cranky and felt like no one could understand. I felt all alone in a room full of people. After about two month of wallowing, waiting for the chemotherapy to work, and being terrified of every new ache and pain in my body, I have decided not to let this stop me.

I am not dead. I am not dying. I have overcome a lot to get where I am today. I have accomplished a lot that I am proud of. Just because I have cancer does not mean I am any different. I have not changed. I struggled to get to where I am, and without those struggles, it wouldn’t taste quite as sweet when I get what I work for. I will continue to work for what I want. I won’t let this slow me down or hold me back. My future isn’t gone, and it doesn’t look bleak. It’s so bright, I should wear shades. My life isn’t over. It’s just starting. But with the new outlook that a cancer diagnosis gave me, that everything is beautiful, I see that I have everything to work for, everything to fight for. Cheers to the miles it took me to get here. It has been worth it.