The Blogger Recognition Award

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The Blogger Recognition Award comes to me from  SpoonieMom from A Spoonie’s Tale. Thank you so much for nominating me for this award.

Rules-and-regulations

The rules of this award are:

1. Thank the blogger who nominated you.

2. Write a post and display the award.

3. Share in your post a brief history of how your blog started.

4. Give advice to new bloggers.

5. Nominate other bloggers you feel deserve the award.

6. Let each blogger know that you have nominated them.

 

How it all began

I started  Undiagnosed Warrior as more of a personal journal that friends and family could read as a way to keep up with my search for a medical diagnosis. Although I had been searching for a diagnosis fto my unexplained symptoms for about  five or so years prior, although it was to a much smaller extent than what was eventually going to come with starting my care at one of the top-rated hospitals in the country. Even beforehand, though,  I had spent much of my childhood and teenage years going from doctor to doctor  but had been met with a great deal of opposition from the medical community since I was a young, highly productive female with nonspecific symptoms that varied substantially from day-to-day – and from one year to next. Nevertheless, I had never imagined that my blog would turn into what it has over the last year and a half, nor did I think my blog would lead me to all the opportunities it has, such as becoming a part of an amazing community and being able to “meet” so many strong, intelligent individuals who had gone through exactly what I had gone through. Essentially, the Undiagnosed Warrior Blog has taught me how to not only advocate for myself but for others as well. It gave me the ability to learn and seek out more information. It provided me support when I felt alone. Ultimately, it’s what led the way to my diagnosis – actually, multiple diagnoses – some of which were so rare that I’m not sure any of them would have  been found without the help of everybody in the blogging community and on the Facebook support pages. So thank you!

It’s because of this blog and my followers that I continue to remain strong and I’m determined to bring awareness to the injustices and difficulties that result from the current state of our medical systems. It’s not in our heads and our symptoms are real –  we will prove it! (although it’s a shame that we have to…)


I am not a “professional blogger” by any means, so really the only advice I can share is to keep telling your story – to anyone or anybody that will listen. Personally, I think  the more we talk about chronic, invisible, or undiagnosed illnesses , the more likely  other people will begin to understand where we’re coming from and how hard life truly is for all those who are suffering. With time, my hope is that the stigma of chronic illness or pain will be removed from society and we’ll gain additional support us in nearly the same way that the public has become tolerant of other forms of illness or disability.

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Again, huge shout out to Spoonie Mom from  A Spoonie’s Tale. When you get a moment, check out her blog as she offers such good information about living with a chronic illness and how to make self-care important.


I would like to nominate the following blogs for the Blogger Recognition Award.

(Of course, they are under no obligation to participate.)

  1. Finding Life’s Silver Sun
  2. crazyphatmommy
  3. MSnubutterflies
  4. Kelly Alive
  5. fibronacci
  6. Midnight Knitter
  7. Polishing Dookie
  8. Strange Label
  9. SassaFrassTheFeisty
  10. WorktheDream

 

IIW15: A Battle Between Visible and Invisible Illness

Why the Fight?

You may have seen it all over the news this year: Nasty letters left on the cars of those suffering with invisible disabilities. These are just a few of the examples:

How much you want to bet that there were plenty of other instances, just like those above, that were not reported in the news?

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Let me start by saying, I’m not undermining your feelings towards those who thinks it’s okay to use these spots for convenience – because it’s not. Trust me when I say that I do understand the frustration you must feel when others abuse handicapped parking spaces, essentially taking away these reserved spots that provide you with the accessibility needed. It’s indescribable, really.

However, did you even bother to take the time before writing such a nasty note to actually look for a legitimate parking permit? All of these cases had them – and it’s not like they just hand them out to just anybody.


Information retrieved from care.com

How to Apply for A Handicapped Parking Sticker:

“When you have a disability, there are little things you can do to make your life easier. For example, do you have trouble walking or do you use a cane, wheelchair, walker or other device to get around? Then you’re probably eligible for a handicapped parking sticker.

This simple permit is a must if you have difficulty getting around or if you’re the primary caregiver for someone who has a physical disability. Think of all those shopping trips and doctor’s visits you go on. Being able to park near a front door can save lots of time and energy.

But how do you get one? Here’s a step-by-step guide.

  1. Check if You’re Eligible
    Most people actually aren’t aware that they’re eligible for a handicapped parking permit. They may not realize their disability qualifies them for one or they may not want to admit to having a disability in the first place. The eligibility regulations vary by state and city, but you may be entitled to one if you use portable oxygen or have problems walking.(Click on your state at the bottom of this article to find out more information for your area.)
  2. Know Your Options
    There are different permits available — some for short-term disabilities and some for longer periods of time — depending on your state. Some states offer license plates with permanent handicapped symbols on them, while others provide a placard that can be hung from the rear-view mirror. The tag you should apply for depends on your situation and disability. Temporary/short-term permits usually last for about six months, while permanent parking stickers may be valid for up to two years.If you’re a veteran with a service-connected disability, you may also be eligible for disabled veteran permit. The fees are often waived for these types of permits.
  3. Get an Application
    Check out the website for your local DMV (or the city, town or village clerk that issues permits in your area) and read up on the rules regarding available tags, associated fees and what’s required in the application process. Then print out an application.
  4. Talk to a Doctor
    As soon as you think you or a loved one might benefit from a handicapped sticker, make a doctor’s appointment to discuss parking tag eligibility. (Depending on your disability, you may need to meet with a medical doctor, osteopath, podiatrist, chiropractor, optometrist, registered nurse, etc.) Speak candidly with your doctor and discuss how this permit might help you and your family.If you’re eligible, the physician will fill out the application you printed out or provide a note saying why you need the permit. (Some doctors have these applications available in their offices, so you may not need to print it out.)
  5. Apply for the Permit
    Usually, the disabled person must apply for the handicapped sticker — either online or through the mail. You’re applying for a permit for a person, not a car itself. You can usually ask for permits for several cars all at once.It generally takes about a month to process an application and receive relevant tags or plates. Plan accordingly, especially if you know ahead of time that you might need a temporary tag for a scheduled surgery.
  6. Use the Permit Properly
    There’s a big problem with handicapped parking fraud — people who don’t have disabilities use the permits to score better parking spots. So make sure you read your state’s rules carefully. What areas can you park in? Does the permit-holder have to be in the car? What about if you’re dropping someone off or picking them up? Is the permit good for traveling in other states?
  7. Renew Your Permit
    Renewing also depends on your state. Permits, tags, stickers and license plates all have varying expiration dates — and the renewal process differs depending on whether you have a permanent or temporary sticker. Some tags automatically renew, while others require you to re-certify you’re eligible for a handicapped permit.
  8. Get a Handicapped Parking Sign Some areas let you designate a handicapped parking spot in front of your home. Check with your city or town’s Disability Commission for more information.
  9. Learn the Rules in Your State

To say I’m disgusted with this epidemic is an understatement.

I honestly thought that you would understand what it’s like to feel pain and the hardship that it causes. To know how it feels to be judged by others. Yet here you are – doing exactly that.

This behavior is not okay and it needs to change. Having a visible disability doesn’t make you more privileged or give you the permission to judge others. If they did the same to you, would it be discrimination? How would you feel it you had to explain yourself or your disability everywhere you went? We already have to do that enough. With the doctors who don’t believe we are sick. With the family or friends who think we are just being lazy or dramatic. Or our place of employment when they wonder why we are absent so much. And now – to strangers.

Individuals with invisible illnesses are tired of having to validate themselves – proving how sick they really are. We are constantly made to feel guilty because of the limitations set by our conditions. Always pushed to do things we shouldn’t do just because we want to look or act normal. Could you deal with this every day? Would you live like this?

Please understand, people with invisible disabilities also benefit from the use of these spaces. Let me give you an example: Some days it feels almost impossible just to go to the store. You really don’t want to go – but you know you have to pick up your prescriptions. First you have to get out of bed and get dressed. Then you not only have to drive yourself there, but now you have to get out of the car, walk all the way across the parking lot, and head to the back of the store to get to the pharmacy. Perhaps your muscle aches, you have extreme fatigue, and you have passed out more than once that day. It takes your entire strength just to keep moving. *Please don’t pass out* *Don’t throw up* *I feel like I am dying* But you do it anyways because without these prescriptions, you know that you’ll only feel even more terrible than you do now- or worse- you could end up in the hospital or even dead. So being that much closer to the door, rather than having to trek across a large parking, will ultimately save you some spoons (see Spoon Theory). It really is a lifesaver.

So the next time you decide to leave a note on someones car, I urge you to just think about the things that YOU can’t see.

Just because someone “doesn’t LOOK sick” doesn’t mean that they AREN’T sick. Looks really can be deceiving.

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There are millions (maybe more) of individuals in the world living with an invisible illness. If we could band together – both visible and invisible – imagine what we could do to change the lives of those living with ANY type of disability. Think about it.

I know it’s a cliche´ to say, but I’ll say it anyway.

Truly, you can’t judge a book by it’s cover. 

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I Will Let The Wind Decide…

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Everything is a difficult decision, at least to me. 

I’ve struggled with indecisiveness my whole life, but it seems to be getting worse the older I get. Simple things, fun things, everything… becomes such a chore because I spend more time thinking and worrying about it than actually enjoying myself. Granted, I’ve always been extra cautious my whole life, but I think a lot of this also comes from being sick my entire life. I’m afraid to pick or do the wrong thing, have regrets, or even worse- disappoint somebody that I love. It’s a constant battle that is raging inside of me and it’s becoming extremely exhausting.

Here’s a good example: we purchased a new bed this weekend because I’ve had trouble sleeping for months. When you’re sick, there’s nothing more that you want than to just relax and sleep, sometimes all day. There’s nothing more in this world that I love more than sleeping (okay, maybe that’s not 100% right but you get the idea). Still,  I literally can lay in the bed for hours- in pain, not sleeping- all because of the current condition of our bed. To be fair, our current bed was a hand-me-down from my brother, so it’s quite old to begin with. The bed frame, made of wrought iron with faded paint, is broken. The queen mattress sags in the middle now, so we tried to compensate for it by adding a 4-inch memory foam mattress pad (and not one of the cheaper ones either) . All of this has been tolerable, that is, until the rashes, muscle pain, and arthritis increased tremendously  for me over the last 6 months or so.  The mattress pad itself is probably the worst, though, as it is so thick and dense that it is actually harder than the mattress itself. Needless to say, after being unable to sleep (even an hour) for three days straight last week, my husband and I decided to bite the bullet and bought a new bed.

Luckily, we got a smoking deal on a king sized pillow top mattress that is mixed with memory foam (the soft kind). It was the highest end model (and most expensive) they had in the store, but it was still way cheaper than the Sleep Number, Temper-Pedic, and all the other mattresses we had looked at online that we knew we could never afford (Have you seen the new Sleep Number bed -the X12– Holy cow!). Anyways, we got the perfect king mattress that feels like we’re sleeping on a cloud, with the platform leather base, and delivery for less than the average cost of a twin mattress from most mattress stores. It should be delivered this week once the next shipment comes in. I haven’t been this excited about ANYTHING in so long, I can’t even remember.

Picking out the new bed was easy because I wanted the exact opposite of what we have now. The problem then lies in buying new bedding for it, as all we currently own is for a queen size bed (not to mention the linens needed to be replaced as well). Sure enough, three days later, and I’m still searching for the “perfect” bedding. There’s too many options: what is the best I can get for the money? I don’t want to spend too much (the bed was more than I should have spent, but needed). What look am I going for? I like so many things and have too many ideas. And why are the 75,000 mattress protectors, 30,000 sheet sets, and 500 comforters in the color I want. It’s just too much! It’s driving my husband crazy. But to me, I don’t want to put “cheaply” made bedding on a brand new bed. Plus, the bed linens set the stage for the feeling and design of the bedroom. Ugh, I just can’t decide. I don’t want to PICK the WRONG thing.

Now hours (days) into my quest for new bedding, I still have nothing in my online shopping cart as I’m left both tired and feeling like a complete failure. Oddly enough, it feels oh so familiar to my ongoing search for a diagnosis. Is there anything in my life that is simple? -Nope-

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Why is it so hard to make decisions?

In life and in chronic illness

Those of us living with a chronic illness have to not only make the everyday, regular decisions (like the rest of the population), but we also have the added burden of having to make complicated choices about our overall healthcare and well-being. Although deciding on which new bedding to buy may not be the easiest decision in the world (as I learned this weekend), imagine how much harder it is, then, to be sick with a chronic condition and every healthcare decision you make could result in truly life or death consequences. Talk about pressure! It’s no wonder that both myself and many others in similar situations have such a hard time getting past indecisive behaviors.

Think about it:

  • We make so many choices in day-to-day life around our conditions.
    • Will I take these medications the doctor prescribed, despite the side-effects?
    • How is my energy best spent today: cleaning the house or visiting with a friend?
    • Do I have enough spoons to make it through the day?
    • Should I call the doctor about this symptom or wait to see if it gets better?
    • Will I eat healthy today? Will I eat at all?
    • Maybe I’ll just go back to bed…
  • We also make decisions that could impact the future of our health and quality of life.
    • We put our bodies through hell with testing, medications, experimental treatments, etc.
      • Exposure to too much radiation or nuclear medicine (there’s a reason that radiology techs always wear protective gear and are monitored while they are working).
      • Many of our medications are serious stuff and could have long-term or devastating effects.
        • some medications are highly addictive.
        • some medications are capable of shutting down your organs over time.
        • some of us even take doses of chemotherapy to help our conditions.
        • most of our prescriptions are for a lifetime.
        • and more importantly, we could die without some of these medications.
      • To have surgery or to not have surgery: that is the REAL question.
    • Balancing budgets and financial obligations can be hard.
      • Sometimes we miss days, weeks, or months of work because of our illness. Some of us can’t even work at all.
        • no work = no money, plain and simple.
      • Healthcare is not cheap. Medical bills add up.
        • if you’re chronically sick then you are also “chronically” visiting the doctor’s office or hospital.
          • not just any ordinary doctor’s office, of course, but more often than not we are seeing specialty doctors – in every field of medicine.
          • and not just any hospitals – specialty hospitals, world-renowned hospitals, and even research hospitals.
        • prescriptions can be expensive as well. And we need them. See above.
        • some us  also need accessibility equipment or certain items to help manage our conditions:
          • handicapped rails.
          • adjustable beds.
          • home care or nursing.
          • compression socks or stockings (anywhere from $10-150 a pair – for socks!)
          • specialized diet foods.
          • service animals (and the extra pet care costs).
          • pill counter or alarm.
          • medical alert accessories.
          • books or videos on management or therapy.
          • a new bed (just kidding!), but the list can go on and on depending on the person’s condition or individual needs.
  • We want to have a sense of control since we have lost control over so many other things in our lives.
    • I know what you’re thinking… it doesn’t make sense. Or does it? 
      • We want to get the control back because we feel like we have lost it. However, having full control over life requires a lot of work and is often a huge burden. Sometimes fear can get the best of us when we perceive that the world is in our hands. This added stress then makes us question ourselves and lose confidence in the choices we make. Once confidence is gone, it becomes harder to make decisions, thus back to feeling like we have no control once again. Ultimately, it’s a vicious circle.
  • And our choices not only affect our own lives but the lives of our loved ones as well.

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Given the amount of pressures we face, it’s not at all surprising that a lot of us are quite indecisive then, is it? Still, in addition to what is mentioned above, there are many other factors that can influence one’s inability to make decisions:

  • Anxiety about making the wrong decision.
  • Not wanting to disappoint others with our choices.
  • Fear of change.
  • Need for security.
  • Too many options offered in our modern society (i.e. bedding).
    • and technology makes everything both easier and complicated at the same time.
  • Expectations of perfection.
  • Fear of rejection or failure.
  • Low self-esteem.

44f76732474693922c819855d1f9859eSince being sick often requires a great deal of planning, over-thinking, and decision-making, it would be nice to have the ability to take a break once in a while.  How nice would it be to have someone else make the important decisions for us once in a while? I can’t even count how many times I’ve said to my husband or my friends, “Just tell me what to do!”. Obviously, it’s not always that simple.  When it comes down to it,  these decisions involve your body and your life, and therefore, they are your choices to make and your’s alone (unless, of course, your underage and/or not medically able to make your own decisions legally). Learning how to manage the anxiety and stress that comes with chronic illness will help tremendously in many aspects of life, as well as in learning to cope with indecision.

How can I stop being so indecisive?

I found some great, detailed info from House of Insights that outline some steps that can be taken to overcome the inability to make decisions. According to Lorna Atkinson, the author of the article entitled 12 Tips To Overcome Indecision, “the key to making empowered decisions is to know yourself. The more aware you are of your personal biases, habitual thoughts, feelings and emotional states the greater your ability to avoid old patterns and tendencies.  By disrupting old patterns, we also disrupt automatic responses and behaviors.  This makes room for a fresh perspective free of past references which greatly enhances the chances of making informed decisions.

1. Know your patterns. Constantly thinking the same way programs the brain to respond in a fixed manner by flooding the body with a chemical/hormonal cocktail that produces the feelings compatible with your repetitious thoughts. We get hooked on our own thoughts and emotions that loop and feed one another.

Only by monitoring your patterns to be aware of them will you have a chance to override them and their related feelings.

2. Discernment. Learn how to approach information with a critical mind and discern between beliefs, opinions and facts. Develop the ability to see the situation objectively by taking your personal preferences, biases and fears out of the equation.

3. Bust confirmation bias by stepping back and looking at the big picture.
Confirmation bias is our inclination to favor information that supports our beliefs – which is not a good thing if our beliefs are inaccurate or outdated. Cultivate the ability to bypass the brain’s filtering system by considering multiple alternatives, not just one or two

4. Modeling the successful solutions of others.  Investigate what others in a parallel situation have done and model their procedures, with your own personal twist of course.

5. Change your perspective. Play devil’s advocate and consider the opposing view point.

6. Get some distance from the problem. Sleep on it and re-evaluate by looking at it from various points of time in the future such as in a week, a month and a year. Thinking long-term helps to bypass the emotional pull of short-term solutions.

7. Write it out. With pen and paper, free associate to resolve inner conflicts. The simple act of writing gets the thoughts out of our head and seeing them on paper helps to settle confusion.

8. Wait a bit. Don’t waste time and energy stewing on it before the decision is needed. Usually, new info will come in that makes the decision easier.

9. Make a commitment. Be accountable to yourself or someone else to bolster your determination.

10. Turn your problems into opportunity. Accept what is and look for the silver lining. what possibilities does it offer to move you in the direction you desire? Or to learn and grow?

11.  Ask yourself better questions. Know the four basic questions to ask when faced with a decision:

  •   alternatives – what is possible? Or probable? Or impossible?
  •   expectations – what consequences will follow?
  •   preferences – what is the inherent value of the consequences?
  •   decision rule – how is a choice to be made?  What are the strategies to be employed? What are the loss functions of each action?

12. Be a nonconformist. Conformity is the urge to “fit in” and belong to a group, the result of real or imagined group pressure.  It’s driven by social anxiety and the individuals’ desire for status. And while group loyalty has its’ place, it has its’ perils as well.  Such as committing to an idea that you don’t really believe and deferring individual interests to the well-being of the group. Often, we don’t even ask ourselves if we really benefit from the group affiliation. To make powerful decisions, learn to value your independence and self-sufficiency.  Your decision must first benefit you, then the group.

Now that we have the basics to consider when faced with making a decision, those situations that used to be frightening and challenging for us are now a platform for practicing the steps to make empowered decisions.

Use the tips above and start with small decisions. Making small decisions will build the characteristics of self-esteem, confidence, and self-reliance.  And these traits help develop the emotional makeup necessary to be successful in life.  And once we have some success with our new procedures, making the big, important decisions will be much easier in the future” (Atkinson, 2013).

Remember:

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Just stand still, look pretty.

But you don’t look sick…

My illness is only invisible because I decide what you can and can’t see.

Much of living with chronic illness is hidden from the outside world,

in an attempt to be as normal as physically possible.

So unless you live it yourself, you’re blind to it.

But nothing is truly invisible if you make a conscious choice to really open your eyes.

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So what does invisible illness really look like then?

Allow me to show it you.


You can see invisible illness in the things I do each and every day.

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Visible in the adjustments I make just to do everyday things.

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You can see it on the pages of my planner in which I write every appointment and daily to-do list.

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Or in my notebook that I take everywhere with me.

Otherwise, I will forget everything.

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Or the time I spend doing medical research,

hoping to find an answer for what the doctors can not find.

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You see it in the amount of caffeine I drink, just to stay awake.

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In how long it takes me to do the housework and laundry.

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Or how hard it is just to run simple errands.

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You can see it sitting on my bookshelf.

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In number of times I wash my hands in a day.

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Or the fact that a good portion of my time is spent hidden away in a bathroom.

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Illness doesn’t leave room for hobbies, much less the things that are fun.

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Invisible illness is seen in the never-ending doctor’s appointments and medical testing.

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Or the procedures I’ve had, despite knowing whether they will work or not.

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You see it in all the blood draws the doctors run regularly, trying to get a diagnosis.

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And the therapy appointments I attend just make sure I am not crazy.

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You see invisible illness in all the paperwork I have to complete and keep track of.

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In the two three inch binders that hold my medical records

which I need to bring to every doctor’s appointment.

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-one for clinic notes, one for labs/testing-

You see it in the summaries I put together to keep all my doctors on the same page.

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Or in the advanced directives, living wills, and Do Not Resuscitate orders.

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My illness is clearly visible in the medications I take  every day.

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You can see it in my oxygen concentrator and tank that help me to breath.

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In the duo-nebulizer that I keep at home

just in case an attack comes on and I can’t get to the clinic in time.

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 In my monitoring tools -in my blood pressure cuff and oximeter.

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In my heating pad and humidifier.

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My invisible illness is hidden deep inside my travel case,

full of emergency medications and supplies for when I leave the house.

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And in the lessons my husband has had to take to administer medication

or help me in case I can’t help myself.

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You see my invisible illness in the symptoms I try to conceal and hide.

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Just because it’s not easy to see, doesn’t mean it’s not there.

Do I look sick enough now?

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Because this is how I look at home, behind closed doors.

In real life, invisible illness is not so invisible afterall.

Remember that the next time you judge someone,

when you don’t believe they are as sick as they make out to be,

when you make them prove how sick they truly are,

or say “but you don’t look sick…”

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Like a small boat on the ocean…

I miss having good days.

I can’t remember the last day. 

I want to hide the pain away, just for a few hours.

I’m emotionally and physically exhausted.

The more I push to get stuff done, the more that is piled on me.

When can I breathe? 

The more I push to get stuff done, the more that is piled on me. 

The list grows faster than I can get things done.

 It seems like it’s never ending.

More appointments.

More paperwork.

More decisions to make.

More questions, more confusion.

More. More. More.

And with doing more, comes more pain.

More symptoms, More stress. 

More Stress, More symptoms.


But I’ve still got a lot fight left in me…


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I’m braver and stronger than you think I am.

I know there is a reason to this journey.

There’s purpose in the pain.

Strength in sickness.

You won’t see me fail, for I am fearless.

Try and break me, 

and you’ll see the warrior that I really am.

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Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time

This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
Cause I’ve still got a lot of fight left in me

Losing friends and I’m chasing sleep
Everybody’s worried about me
In too deep
Say I’m in too deep (in too deep)
And it’s been two years
I miss my home
But there’s a fire burning in my bones
And I still believe
Yeah I still believe

And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time

This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
Cause I’ve still got a lot of fight left in me

A lot of fight left in me

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong (I’ll be strong)
I’ll play my fight song
And I don’t really care if nobody else believes
Cause I’ve still got a lot of fight left in me

Now I’ve still got a lot of fight left in me