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Patient Safety Awareness Week – A Book Review of “Your Patient Safety Survival Guide: How to Protect Yourself and Others From Medical Errors”

Seeing as though today is the final day of Patient Safety Awareness Week, I thought this would be the perfect time to present my review of a highly acclaimed book on patient safety and healthcare. Anyone who knows me will tell you that I am a pretty avid reader. I will read just about anything and everything, just as long as it appeals to my emotions and/or experiences at any given time. Given that my life currently consists of ongoing medical appointments and other healthcare management tasks, most of the supplemental reading I’ve been doing over the last few years (outside of assigned reading for school and keeping up with pertinent medical journals) has primarily consisted of self-help books relating to chronic illness, psychology, and navigating the medical system. So, when I was given the opportunity to review Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors by Gretchen LeFever Watson, I was extremely elated. Although I had originally planned to take advantage of this opportunity during winter break from school since I knew that I would be recovering from a total hysterectomy and would be looking for things to do while stuck in bed, I am honestly kicking myself for not clearing some time in my schedule prior to surgery because I could have really used this information before my own patient safety was put at risk.

For those of you who are unaware, I was scheduled to have a total hysterectomy on December 8, 2017, using the da Vinci Robotic method in order to rectify the excessive and erratic bleeding that started as a result of complications from late-onset endometrial ablation failure following my NovaSure procedure in 2015. Unfortunately, what was supposed to be a “minimally invasive” procedure with “minimal scarring” and a “quick recovery period” turned into this mess…

Hysterectomy Scar Resulting in Injuries Caused by the da Vinci Surgical System

Photo by Undiagnosed Warrior (2017). Hysterectomy Scar Resulting in Injuries Caused by the da Vinci Surgical System [Image].

… but I will go into more details of this tragic event at a later time. Needless to say, it would have been far more helpful to have read this book before I actually needed the helpful tips supplied in the pages of Your Patient Safety Survival Guide.

The first thing I want to mention before reviewing the content of this novel is that I found myself drawn to this book simply because the author’s personal and professional background intrigued me. From a professional standpoint, Dr. Gretchen LeFever Watson holds a Ph.D. in Clinical Psychology and has held a variety of training and leadership positions in hospitals and community-based healthcare programs. Not only has she received numerous awards and grants for her research, but her work has also generated a great deal of media attention and recognition from other subject matter experts in the fields of psychology and healthcare as well (Watson, 2017). This is in addition to publishing two other patient safety books along with Your Patient Safety Guide and several peer-reviewed research papers. Considering that the author is clearly well-versed and has a long-standing history of working within both the past and current structure of the American medical system, I knew she would offer a great deal of insight from the professional side of health care. The fact that Dr. Watson has also been an advocate for patient safety and wellness from personal experiences as both a caregiver for her mother and as a parent when a medical error almost took her daughter’s life at the young age of only four-years-old made me think that her opinions would likely represent a more balanced perspective overall (Watson, 2017). As someone with multiple chronic and rare conditions, and a student studying for a degree in clinical psychology that has also spent many years working in veterinary medicine prior to disability myself, I was definitely interested in reading her perspective on some of the issues currently plaguing the safety and care of patients. Thankfully, this book did not disappoint.

Aside from the fact that each chapter of Your Patient Safety Survival Guide covered a wide breadth of obstacles in receiving adequate medical care (e.g., safety habits and best practices, avoidance of medication errors and overprescription of dangerous medications, and the prevention of infections and common medical injuries that can occur as a result of human error, negligence, malpractice, and purely bad luck), the thing that I liked most about this book is that every topic discussed in the text provides readers with an eclectic explanation illustrated through research statistics and patient examples. Chapter 1, for instance, notes some shocking statistics that suggest “at least 440,000 patients die needless deaths in US hospitals each year” and the “initial estimate of the financial impact of the patient safety crisis indicated it totaled around $5 billion annually, about one-quarter of which involves out-of-pocket expenses” (Watson, 2017, p. 7-8). While these numbers are obviously alarming, the author prevents hysteria or anxiety over such occurrences by putting the situation into a more realistic perspective by detailing the potentials causes of medical error and offering ways to combat it as either a patient receiving care or professional providing care.  In this way, the author is avoiding labeling the problem according to a single source but rather a complex, systematic problem that can result in an infinite number of breakdowns within the medical system itself. Personally, I find this account refreshing because it first acknowledges the problem, without placing blame on either the patient or medical professionals specifically, and then it explains the how and why medical errors happen. It also makes it easier for the reader to accept the information before the author moves on to discuss her own recommendations and potential solutions for resolving the problem at hand. Nevertheless, one factor that distinguishes this book from many other patients and/or chronic illness texts is that Dr. Watson wrote the content of this book to equally address a combined audience of both patients (or their family members) and medical professionals alike.

Another important element of Your Patient Safety Survival Guide that I found relatively helpful is that each chapter presents the reader with either a tool that can help them measure and target goals relating to different variables of patient safety or an action plan that can minimize the potential for common medical mistakes. Although most of the tools and guidelines presented in this book are based on logic and common sense, I can personally attest to how easy it is to forget even the simplest of things, especially when you’re anxious about an upcoming surgery or procedure, concerned as to whether the physician will take your medical complaints seriously or not, or you’re just simply distracted by pain or other symptoms. In these cases, simpler is almost always going to be better in the long run anyways, although some of the planning tools and safety tips were also new to me as well. Still, the biggest takeaway that I got from reading this book came from the seventh and final chapter entitled Acceptance, Apology, and Forgiveness: Safeguard the Lives of Patients and Healthcare Providers. One of the reasons that this specific chapter stood out to me the most is that the end of this book overly emphasizes the fact the doctors and other healthcare providers are only human and, therefore, they’re liable to make mistakes just like anyone else. As Watson (2017) points out, “we all make errors. Our errors rarely result from the willful disregard for others. Factors beyond the control of providers often influence the emergence of error, and, when errors occur, providers are often in need of compassion – just like event’s primary victims” (p. 140-141).

With my own significant complications resulting from a major medical error fresh on my mind, the stories and information shared within these final pages clearly hit too close for comfort on a number of occasions. In many ways, it would have been easier to blame the surgeon and his support staff who performed my hysterectomy for everything. Lord knows that I had plenty of good reasons to rightly justify my anger and hatred over the situation, but what good would that have done in the end? Being angry about it wouldn’t make me feel better or allow me to heal any faster; yelling at the doctors and the hospital staff also wouldn’t prevent similar mistakes from happening to other patients in the future. Though it’s far more comfortable to blame the doctor when things don’t go as planned, it’s equally as hard to accept that it’s rare for patients to consider the harm we inflict on medical providers by establishing unrealistic expectations regarding our health care wants or needs. This is another reason why I really enjoyed reading this chapter because I liked that Watson (2017) discusses both the physiological and psychological impact that medical errors have on both the patient and their families, as well as the significant damage and stress that these faults can have on healthcare providers and facilities. Once again, it’s easy to forget that doctors and their support staff already feel the train and the pressure simply from completing the tasks they were trained to do in the first place. On the other hand, there will always be those few providers who tend to forget that patients are also human and just as fallible as they are themselves. Watson (2017) describes the apparent divide amongst patients and professionals best by suggesting that the biggest flaw in the wake of a major medical error or mistake occurs when the lines of communications are closed off, such as when full disclosure about the nature of the error is avoided in order to favor one’s pride instead.

In the end, there really isn’t too much more one could ask for in a single book regarding patient safety and healthcare, but if I had to choose one thing to criticize about any part of this book it would have to do with the fact that some of the chapters offer a rather viewpoint on the use and/or abuse of stimulants and opioids for managing chronic symptoms or pain. However, this is just my personal perspective based on taking these (or similar) drugs in order to manage my own symptoms either in the past or present, in addition to considering alternative opinions from other chronic illness patients who have also dealt with the medical system for an expansive period of time as well. Even if I don’t necessarily agree with all of the author’s personal and professional opinions as deliberated throughout Your Patient Safety Survival Guide, I still respect and appreciate the author’s judgments on these topics as she does support her logic using mainstream facts and theories regarding these types of medications. I am also very much appreciative of Dr. Watson’s willingness to devise solutions to the problems in healthcare and patient safety rather than focusing on the inadequacies of the system alone. I really do believe that this book – and Dr. Watson’s research and safety initiatives for patient care – will prove beneficial for anyone engaging in any part of the medical system to some degree. More importantly, I would highly recommend this book to anyone managing a chronic or rare disease since we are among the most vulnerable population of victims exposed to potential medical mishaps as we are routinely asked to put our faith, trust, and livelihood in the hands of practitioners of medicine.

If you’d like to purchase a copy of Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors, please visit one of the following online retailers:

https://www.amazon.com/Your-Patient-Safety-Survival-Guide/dp/1538102099

https://rowman.com/ISBN/9781538102091/Your-Patient-Safety-Survival-Guide-How-to-Protect-Yourself-and-Others-From-Medical-Errors

https://www.barnesandnoble.com/w/your-patient-safety-survival-guide-gretchen-lefever-watson/1126025512

https://play.google.com/store/books/details/Gretchen_LeFever_Watson_Your_Patient_Safety_Surviv?id=XQglDwAAQBAJ

References:

Brown, A., Demyan, A., & Agha, S. (2014). Research on Victimization Among People with Disabilities. Retrieved from https://www.nij.gov/topics/victims-victimization/Documents/violent-victimization-twg-2015-browne-demyan-agha.pdf.

Cleveland Clinic (2018). Hysterectomy: What You Need to Know. Retrieved from https://my.clevelandclinic.org/health/treatments/4852-hysterectomy-what-you-need-to-know.

Drugwatch (2018). Da Vinci Surgical System. Retrieved from https://www.drugwatch.com/davinci-surgery/

Good Reads (2016). Gretchen LeFever Watson. Retrieved from https://www.goodreads.com/author/show/15244917.Gretchen_Lefever_Watson.

Watson, G. L. (2017). Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors (1st ed.). Lanham, MD: Rowman & Littlefield Publishers.

Wortman, M. (2017). Late-onset endometrial ablation failure. Case Reports in Women’s Health, 15, 11-28. https://doi.org/10.1016/j.crwh.2017.07.001.

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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It’s finally starting to feel like summer.

Since it was a holiday and all,

I decided to take the weekend off from everything.

No School.

No Work.

No Blogging.

No Medical Records.

No Appointment Scheduling.

No Paperwork.

No Medical Research.

Nothing.

It was glorious and much-needed, to say the least.

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I caught up on some sleep and relaxation.

I was able to do some reading for pleasure.

Got organized and ready for school.

Caught up on laundry and {some} cleaning.

Watched TV and movies for the first time in forever it seems.

We fostered a Doberman rescue. He arrived in Colorado on Friday evening,

so spent a lot of time getting him cleaned up and comfortable.

He’s such a sweet boy and only some minor issues with adjustment.

Hoping to get him fattened up and ready for a fur-ever home soon.

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Other than that, the 4th of July was uneventful this year.

We usually plan a lot for the 4th, but with being sick, it wasn’t realistic this year.

The roomies and a couple of friends barbecued.

I was, of course, too sick to eat any of it. It smelled delicious, though.

I did, however, buy a fire pit

and sat by the fire while watching the fireworks off of our back deck.

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I figured that since I can’t go camping this summer,

this is the closest I’ll  probably get to a campfire this year.

Camping last year, even without the severity of my symptoms, was a nightmare.

I couldn’t make it through the night. It was too cold, despite it being August.

My bones stiffened up. I couldn’t breath. I felt like I was dying. 

 My husband had to drive me down the mountain, on dark and narrow roads, in the middle of the night.

I am sad to be missing out on summer, my favorite time of year.

I miss swimming. tanning. camping. hiking. vacationing. sunshine.

I waited all year for this, through all the snow and the cold,

only to become photosensitive and have increasing symptoms

that keep me locked inside the house as much as physically possible. 

Doctors orders.

Even though it’s not the same, by making adjustments, I know that I can still find some  resemblance of summer.

Whether I need to set up a kiddie pool under a canopy,

set up the tent in the backyard,

or roast smores in the fire pit,

I refuse to let this illness take more from me than it already has.

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So now that my “break” is over, it’s time to get back to reality.

New class starts tomorrow.

Need to follow-up (again) about the last round of testing.

Call in prescription refills and do my weekly medication organization.

I need to schedule appointments.

Work on medical records and disability paperwork.

I have a consult with cardiology and a follow-up with neurology this week.

Plus therapy.

My to-do list keeps getting longer.

That’s the hardest part of taking a few days for myself,

I feel behind on my day-to-day management of my illness.

But at least I am mentally and physically rested.

And I have a giant Doberman who needs as much love and care as I do now.

Plus there’s always my menagerie of lovable animals to keep me company, as well.

Nothing is better medicine or therapy than the love and comfort of animals anyway.

I just need to remember to rest when I need it

and try to enjoy life despite my illness.

At least every once in a while.

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Keep Your Head Up, The Colors Are Beautiful

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Lot’s of new things on the horizon, so I figured I’d give a short update.

  • On UndiagnosedWarrior: Been updating and organizing pages, adding new information, noting some tips and tricks, and other things here and there. Take a look around and let me know what you think. I have some good ideas and really want to add more content for those looking for a diagnosis, as well as those who have already been diagnosed. And, of course, keeping you updated on my search for a diagnosis. 
  • On Life: I’m officially back out of work, but this time my short term disability has been approved. After the whole mess with getting a Lupus diagnosis, then having it taken away, then given back by a different doctor, I’m still confused as to whether or not I ACTUALLY have it.  I have a few tests pending and some recent tests that have come back with very interesting results (*Hint: It was enough to finally PROVE my disability claim). I’m waiting for the doctors to call to discuss their thoughts, so I don’t want to jump the gun on yet another diagnosis, so I’m going to wait to post, but I’ll update as soon as I can.

As for now,

I just want to leave you with the strength in knowing

 that all your struggles, all your hard work, and your persistence to keep looking 

IS WORTH IT!

I know it is hard to stay patient and that you are tired of waiting,

especially when  you have been sick for so long.

But waiting is always the hardest part. 

Keep trusting your instincts. 

Trust the journey.

You know your body better than anyone.

The answers lie WITHIN YOU.

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“Keep your head up
The colors are beautiful
When they say give up
Turn up your radio
All the sentimental memories you own
When they say grow up
It’s just like a funeral
Keep your head up
The colors are beautiful
Keep your head up
It’s all right in front of you
When they say wake up
You’re breaking ridicule
When all the sentimental memories you own
Keep you trapped inside your room there all alone

And it feels like
It feels like you’re lost
And it feels like
It feels like you’re lost

Is there some way you can be out on your own?
Trust yourself
Don’t waste another day at all

On your own

Keep your head up
The colors are beautiful
And it feels like
It feels like you’re lost
And it feels like
It feels like you’re lost

Is there some way you can be out on your own?
Trust yourself
Don’t waste another day at all

Watch this fade away
Everything fades away
Keep your head up
The colors are beautiful”

(“Head Up” by Sugarcult)