The Shortest, Sweetest Six Days Ever

While I was on my short hiatus from blogging, I was enjoying 6 symptom-minimal days spent with my boyfriend. This was actually the first time we had really been together, although we had (sort of) known each other for over 3 years. We met through Camp Odayin , a camp for children with heart disease.

I only had the privilege of attending Camp Odayin for 3 years, while he had gone for 6. We were both born with heart defects and we both have pacemakers. In fact, the majority of campers have congenital heart  defects, and many of them have either an implanted pacemaker or defibrillator.I think I speak for the majority of campers and staff when I say that Odayin is, simply put, the best place on the face of the planet. And no, we don't just sit around doing arts and crafts because we are heart kids - we go kayaking, horseback riding, swimming; we do archery, attack each other with water balloons, have a talent show and a dance, and basically participate in "normal" summer camp stuff, but in a medically supervised environment (2 pediatric cardiologists are on-call 24/7 and there is a nurse in each cabin). It's truly awesome.

Boyfriend and I actually hit it off about 6 months ago, when he contacted me through Facebook. Numbers were exchanged, many Skype dates were had, and the rest is history. We both share a love for "That 70's Show," stand-up comedy, Peanuts (the cartoon by Charles Schulz), extremely cheesy tourist traps (hence our date to Dinosaur Land), and helping others (among lots of other things we both enjoy).

For 6 short days, I felt almost "normal," and had very few symptoms. We went on a few adventures and really enjoyed being together. We made cookies, terrorized the Downtown area, verbally attacked (but kind of secretly liked) Dinosaur Land, held hands, watched lots of movies whilst curled up on the couch, were present at my brother's Arrow of Light ceremony to become a Boy Scout, explored the very sketchy woods behind my neighborhood, and played some pretty competitive rounds of Uno and Scrabble. I can't remember the last time I had so much fun! I'm already counting down until the next time we are together, which will be in late May.

He treats me so well, and I can honestly say I feel like the luckiest girl in the world. I know, cheesy. But this man is truly amazing! My man-eating dog refrained from viciously attacking him, he got me a plane ticket for Valentine's Day to come see him, changed the batteries in the smoke detectors, and put gas in my mom's car. Seriously, this guy is wonderful. Conversely, he's the one who caught a Southern Belle, so I think we're equally lucky. ;)

Sydney 

Guilt and Chronic Illness

(Source)

What's this? A post about guilt? 

WAIT! Don't leave yet! I'm not sending anybody on a guilt trip, although I would love to tell you all about my fabulously guilty adventures, if that's alright. 

Guilt is part and parcel of being chronically ill, both for the ill person and their loved ones. I've been on both sides of it, and it isn't pretty. I had the first taste of it when I was around 7 or 8 years old. My grandfather had terminal cancer, and during cold and flu season, we were not allowed to visit due to the risk of making him even sicker. I did not fully comprehend why we couldn't see him, but I do remember feeling incredibly guilty. I remember how awful that felt: being so helpless and sad, and feeling like I had done something wrong (whatever that could have been at the tender age of 8). But that's the whole thing! Guilt is often an irrational, illogical feeling. This can be evidenced perfectly in the sick people themselves. 

Now that I am the ill person, I've got my very own brand of guilt, and it makes even less sense than the case I just described. I feel guilty for leaving school because I know there are students with Dysautonomia who are able to stay. I feel guilty for being up at 3 AM, writing this when I need the sleep so I can get the house ready for a very special gentleman caller. I feel guilty that my friends and family have to see me so ill. I feel guilty that I can't pick up and go wherever I want, whenever I want with my friends. I feel guilty that you are reading this incoherent slop written by the crazy, sleep-deprived woman with nothing better to occupy her time at 3 in the morning. I even feel a slight guilty twinge at getting such an obscure, under-recognized, and highly-ridiculed disorder. Way to kick me when I'm down, universe! If I have to be sick, can I at least have something that people believe?? There is no better way to add insult to injury than for respected physicians to tell you that "POTS is not a real, physical illness" (see here for my dealings with that gem). I feel guilty for feeling guilty! I'M the sick one here, shouldn't that make me entitled to guilt-free days?

Oh, that's right. I completely forgot. Dysautonomia is the disease for over-achieving, Type-A individuals (studies have actually shown that people who get Dysautonomia tend to be high-achieving, Type-A personalities). Perhaps there is some truth in POTS/ Dysautonomia being a stress-related illness, what with prolonged elevated levels of stress-hormone and all. But just like heart disease, stroke, and other stress-related problems, it is a physical disorder which can be medically verified! I digress. For someone who has striven for excellence since the third grade, accomplished many outstanding achievements, and was in the top of her class (not trying to toot my own horn, just stating fact and making a point), there is no greater irony. I have always been challenge-oriented and extremely competitive. Now the challenges I take on include climbing the stairs without needing to stop and making it through the store without needing a wheelchair to finish what I came in for (no sir, I can't just leave or sit down to rest. I'm here to accomplish something and I will get it done, shoddy body be damned!). Some days getting out a complete and coherent sentence is a competition in and of itself. And I feel guilty because I can't do the things I used to. Guilty because it gets worse every year, and the treatments don't seem to be helping. Guilty because maybe I would get better if only I would listen to all the comments made by well-meaning yet ignorant people (no, I do not care to try your magical root tea made by your local wizard, nor do I care for crystals, small animal sacrifices, vegan diet, marathon running, or any other remedy that you claim will help. I'll consult my doctor on potential treatment plans, thanks). *Bangs head on wall repeatedly* 

I am told constantly to "take it easy, do things at your own pace." Oh how I wish it were that easy. While I may be feeling guilty for not being as intelligent or athletic (HAHA! Erm) or exciting as I was just a few years ago, I will be indulging in a combination of chocolate, YouTube episodes of "Here Comes Honey Boo Boo," Pinterest, and copious amounts of coffee. I deserve to have some guilt-free time for myself, to not think about what is going wrong inside of me. I may or may not finish cleaning the house today, as my body decided to deprive me of Melatonin and desperately needed sleep. This post took me over 2 hours to write; I would love to see how house work would go. I'm sick, damn it! I don't need the guilt. And if conquering that emotion and eliminating stress is going to reduce me to one of those strange Type-B people, then so be it. Yes, I know. I laughed too.

Wishing you a stress- and guilt-free day, 

Sydney :)   

     

Curioser and Curioser!

(Source)

( I couldn't resist - Alice's face expresses my exasperation to a T!) 

In middle and high school, my friends and I went through an Alice in Wonderland phase (yes, we were all cut from strange cloths). We drew characters and scenes, memorized the "Painting the Roses Red" song, and even had Alice-inspired accessories! I went absolutely crazy when Bath and Body Works came out with their Wonderland line. Recently I've had Alice on the brain, but in a slightly different way. 

Living with Dysautonomia can be living in your very own Wonderland: everything is unfamiliar, nothing is what it seems, and the longer you have it the "curioser" it gets. You are Alice, trying to navigate the strange and sometimes frightening landscape, and often sitting to sob a loud "I WANNA GO HOME!". The disease is the Jabberwocky that threatens and must be slain, while remission/ a cure is often the ever-elusive White Rabbit (although some do get better with time and treatment). Before getting a correct diagnosis and being taken seriously, most of us see a host of doctors, who can play any character from Tweedledee and Tweedledum (self-explanatory I think) to the Queen of Hearts (self-righteous and not flexible) to the Cheshire Cat (vague and confusing). As you can see, it's a regular ol' tea party. 

I've been living in my own, extra-curious Wonderland for a good 5 years now. I was born with complete heart block and have been pacemaker dependent since I was 15 hours old. The pacemaker is supposed to keep my heart rate between 60 and 180 beats per minute. Then I fell down the rabbit hole, and even the technology keeping me alive can't get it together! I have seen my heart rate in the 40s and over 200, neither of which are normal, expected, or even "okay." After catching a rate of 43 on my blood pressure monitor a few days ago, I contacted my POTS doctor, who asked me to have my GP order a 24-hour heart monitor. This would be acceptable, had I not just completed a 30-day monitor, which we still do not have results from (I sent it in over a month ago; the company claims to have faxed the results to my doctor but he doesn't have them, so I had to sign an authorization to have them sent to me). A host of other unpleasant symptoms have been cropping up as well, which has also led to needing to have my electrolytes checked. Thankfully those were normal, but I was left with a glamorous bruise on my arm. SO much drama, so little time. 

So I have now completed my FIFTH heart monitor (and have 5 wonderful little red blisters from the electrode stickers to show for it, as I am highly allergic) since stumbling upon Wonderland, trying to figure out what in the world is going on and what to do about it. My original cardiology team ordered the first 3, each time claiming "There's nothing wrong, you're just stressed out, blah blah blah..." And yet, they kept ordering them (think Mad Hatter/ Tweedledee and Tweedledum/ Queen of Hearts/ Cheshire Cat all packed into one department). Admittedly, they did acknowledge that I was having "a few extra heart beats." But, if you can remember, I AM 100% PACEMAKER DEPENDENT!! There shouldn't BE and "extra beats!!" *sigh* Long story - short, I have since found a new hospital. 

I suppose on my map of Wonderland, I'm still running the Caucus Race. As the Cheshire Cat said, "We're all made here."

Sydney aka Alice ;)

(Source)

Will the Sun Ever Shine Again?

**WARNING: Whiny post ahead!! Turn back now while you still can!**

Dysautonomia sucks. POTS sucks. Being chronically ill PERIOD sucks. When you're chronically ill, people start to get annoyed with you. They start to think you're lazy and that you brought it on yourself. And after a while, you start to believe them. They tell you not to think about it. "If you'd just stop thinking about it, you'd feel better." What a ridiculous crock. That's like telling a teacher to stop thinking about their students, or a doctor to stop thinking about their patients, or an architect to stop thinking about designing. It's their job! I'm ill, my job is to try to get better (or at least functional) - of course I think about it. It's hard NOT to think about the pain consuming your life. It's difficult NOT to think about the world passing you by. I can't help but think about the person I used to be who is slowly getting replaced by some strange, sick person. And it's damn near impossible not to think about your abilities and talents that are slowly being chipped away at, one-by-one; about your friends who are out living their lives the way nature intended. 

I had my entire life planned since middle school. I knew where I wanted to go to school, how long I'd be there, and that I wanted to become a pediatric cardiothoracic surgeon. I kept that ruse up until I had to leave college 3 months ago - after only my first semester - because my health had gotten so bad. With a history of passing out, I decided maybe that was an irresponsible career ambition. So now my goal is to become a pediatric cardiologist or pediatric cardiac nurse. There's still time and hope for recovery. But going back to school - especially for medicine - is going to be damn hard in my mid-20s. Nursing? Ok, could still happen. But what about until then? What if I don't recover? It's been at least 5 years, and each year has gotten worse. 

I spent high school in preparation for medical training. I was involved in several clubs and organizations (many health and/or service oriented). I took many Advanced Placement class and as many science classes as I could manage. I practically taught the cardiovascular chapters in both AP Biology and Medical Systems Administration. Heck, I even wrote case studies for those classes based on my heart defect! I earned a 3-year certification in medical terminology and graduated with high honors (and a 4.7 GPA, thank you). I attended James Madison University for one semester, studying Biology/ Pre-Medicine. I took 2 biology courses (among other classes), both with labs and one which was entirely for research. All for nothing. I've wasted too much time, money and energy for it to go down the toilet.

Today, as I was talking to the Physician's Assistant student at my doctor's office, it hit me that I actually HAVE been through A LOT in my short little 18 years. I explained my reasons for coming in (I will discuss this tomorrow) as he just sat there with his jaw hanging open. It hit me again during my pathetic, so-called "workout" this evening. I have no energy, I get tired and out-of -breath, and my heart bumps against my chest like shoes in a dryer. I do everything I am supposed to, and the only thing I have to show for it is 10 pounds of water weight that I gained from drinking liters of water every day and sodium-loading. 

So what if this is my future? I, like many other POTS/ Dysautonomia patients, have the quality of life comparable to someone with congestive heart failure/ chronic obstructive pulmonary disease. All I want is to go back to school and be "normal." Will the sun ever shine again? 

"What if the rain keeps fallin'?

What if the sky stays gray? 

What is the winds keep squallin'?

And never go away?

Maybe soon the storm will be tired of blowin',

Maybe soon it ll will be over, Amen

How do you go on if there's no way of knowin', 

Will the sun ever shine? Wish I could say.

Send me a sign, one little ray.

Lord, if you're listenin, how long until then?

Will the sun ever shine again?" - Bonnie Raitt 

An Open Letter to Misinformed Physicians

Even with all of the studies and research that have been done confirming POTS as a real, physiological syndrome, there are still MANY medical professionals who think that A) POTS/ Dysautonomia does not exist, B) POTS is a functional disorder rather than physical one, or C) are simply at a lack of understanding and information about it. I had a recent encounter with a very highly respected physician in the pediatric cardiology community who told me that "POTS is not a real thing." I had been in this doctor's care from infancy into my teenage years, and he was a professional role model for me. Prior to this statement, I had been in correspondence with him regarding a research fellowship at my university (only an hour away from the hospital he works at). 

After deciding to leave school due to POTS, I simply sent him an email saying that I would be leaving for health concerns and would not be able to do research that summer. He immediately responded asking "Sydney - what health concerns?" I have never received such a quick response. In retrospect, that probably wasn't the best email to send to a member of the medical community. At any rate, I filled him in on the situation and he asked me to call him. I did and the conversation was pretty much him telling me that POTS isn't real and that I'm making the wrong decision (keep in mind he was no longer my cardiologist at the time). Other emails followed saying similar things (which are detailed in the letter). I have never felt more angry, humiliated, and belittled in my life. Thank you for your input (which is completely wrong based on several legitimate medical studies), but the life advice was not at all necessary. I am currently in the care of other excellent doctors for my very serious nervous system disorder, and not once have they agreed nor disagreed with my decision. Keyword being MY. I know MY body and what is going on with MY health. YOUR opinion on the matter was not solicited. *Deep breath* This is what happens when you anger someone with a blog. 

Here is the letter that I wrote to this doctor:

"Dr. ********,

            I’m sure you’ll remember our phone and email conversations which took place last semester. For your convenience and ease-of-reading, I will recount the last three conversations we had:

 On November 8^th, you said: “So here is bottom line. POTS  is not a reason to quit school. Even if one has POTS it is manageable like any chronic illness and stress is the key. If this is worrying you then you should see a counselor- call me and I will get a name”

I replied: “I'm not quitting, just taking a semester. During that semester, I still plan on taking classes online. I find it very difficult to stay proactive in this type of environment when simply sitting up can cause dizziness and tachycardia. I am not worried - just want to make sure that I can continue my education without any more interruptions. I appreciate the gesture.”

You did not reply (not that I was seeking one). However, you did say during our phone conversation that you would be willing to talk about the reasons why POTS “is not a real, physical illness.” So, out of sheer curiosity why you (and so many others) subscribe to this school of thought, I asked over email,

“Why is there such dissension about POTS in the medical community?”

           

            Once again, you failed to reply. I know you are very busy, but I would like an explanation as to why you think POTS is not a physical illness. Your words were damaging and hurtful, and you took an oath upon becoming a physician to “do no harm.” That oath rings true for not only avoiding inflicting physical harm, but also emotional and mental harm. I’m sure you haven’t a clue why they were upsetting, seeing as how you clearly do not suffer with this “imaginary illness.” Please allow me to explain.

            Postural Orthostatic Tachycardia Syndrome, or POTS, is a subset of the Dysautonomia disorders. I pointed out to you that I experience dizziness and tachycardia on a regular basis. I also told you about my fainting episode in class. You are right – ONE fainting episode should not warrant withdrawal from college. However, I worded that email poorly.

I said, “I was diagnosed with POTS at Hopkins last October, and passed out in class recently, which has not happened before.”

What I meant to say was, “passing out while sitting down has not happened before.” I have, in fact, passed out other times, but those episodes were always subsequent to activity. For that, I apologize. This particular faint occurred in a research lab I was participating in, which only added to the concern. Another troubling aspect was after the paramedics arrived, they would not move me for quite a while, due to extreme tachycardia. This is NOT something to be taken lightly.

Your marginalization of what I was and still am going through was rude, dismissive, and out of order. Many people leave school (elementary, middle, high, and college) because of POTS. Many don’t even pursue higher education, and it is not uncommon for individuals to quit their entire CAREERS. I have met a marine biologist and neuropsychologist who, after developing POTS/ Dysautonomia, had to quit their jobs. So please, explain to me how exactly this can be managed. We’ve been on treatment plans with specialists for YEARS, and obviously, nothing is working. We would love to hear your suggestions.

When one’s autonomic nervous system fails to operate in the correct manner, an entire host of problems can be expected. Fainting, dizziness, and tachycardia were aforementioned, but Dysautonomia knows no bounds. Here is a list of other symptoms I (and most others with the disorder) experience regularly:

-          Palpitations/ skipped beats

-          Nausea

-          Muscle pain

-          Joint discomfort

-          Chest pain

-          Various other pain

-          EXTREME fatigue

-          Shakiness

-          Cognitive difficulties

-          Insomnia

-          Exercise intolerance

-          Orthostatic intolerance

-          Pre-syncope

-          Cerebral hypoperfusion

-          Thermoregulatory issues

-          Dehydration

-          Light/ noise sensitivity

-          Headaches

-          Digestive problems

-          Shortness of breath

-          Weakness

-          Blood pooling in lower extremities

-          Dangerously low blood pressure

-          Respiratory problems

This is not an exhaustive list, but I hope you get the general idea.

     

      If your argument is that POTS is caused by deconditioning, I can assure you that is not the case. If you recall, prior to the onset of these symptoms, I was very active and had lost over 50 pounds (as per your instructions). I was doing aerobic exercises daily, performing well in P.E. class, and had taken up golf. In high school, I picked up running as a hobby on the days when I was well enough to do so. That continued in college, and I would be able to run 3-4 times around the interior of JMU’s East Campus. I had considered partaking in multiple 5K races. However, my “breaks” from POTS never lasted long enough for me to train and actually participate in the events. Never has a doctor confronted me about a “smaller than normal heart size” due to deconditioning.

      You seem to believe that POTS is a functional disorder, which I can also refute. It is true that many symptoms of POTS and Dysautonomia can appear psychiatric in nature, and are similar to those present in diagnoses such as Generalized Anxiety Disorder and depression.  You are also correct in saying that “stress is the key,” as the Autonomic Nervous System is greatly affected by stress, but that does not negate the fact that Dysautonomia is, in fact, a physiological disorder. It is typically not caused by stress, and should not be considered to have a psychiatric component. Many recent studies suggest that patients who meet diagnostic criteria for POTS “experience levels of anxiety comparable [1] or less than [2] the general population when ANS symptoms are correctly accounted for [3].”

      Dysautonomia is definitely worsened by stress and anxiety, which is one reason I took time off from school. However, they are not necessarily intertwined, nor are they mutually exclusive. It is important to be able to discern physical symptoms from psychological symptoms. It is also important to differentiate between reactive anxiety/ depression and Clinical Anxiety/ Depression. Patients with autonomic dysfunction may very well experience reactive anxiety/ depression due to physical symptoms such as unpredictable fainting, and to emotions such as guilt, loss, and fear. This does not in any manner suggest that they are experiencing isolated anxiety or depression, nor that that is the nature of the problem(s).

      I underwent tilt table testing at Johns Hopkins on October 31^st, 2011. During testing, my blood pressure plummeted from a healthy 112 range in supine position to 60/40 range upon being raised to an upright position. I also developed tachycardia, which eventually dropped to around 100 bpm before suddenly plummeting to 60 (the lower limit of my pacemaker). If you would like more concrete evidence of tachycardia episodes, please refer to my last pacemaker interrogation report, as it showed rates of over 200 (the upper limit of my pacemaker is 180).

      I understand completely that you were not my physician when these problems arose. You did not know these details. That does not make it okay that you made such brash and flippant remarks. What is particularly upsetting for me is that I looked up to you in a professional manner. I knew from the age of four that I was going into a career in medicine. When I decided upon pediatric cardiology, you were more than helpful and supportive (Walk on Water is still my favorite book and has been referred to several of my pre-med friends). You always treated me as an adult, with respect and dignity: I admired that. You are a fantastic physician, and I am blessed to have been in your care. I just hope that you might take the time to learn about the Dysautonomia conditions so that similar incidents can be avoided in the future.

Sydney Taylor

                                                                Sources

[1] Wagner, C, Isenmann S, Ringendahl H, Haensch, CA. Anxiety in Patients with Postural Orthostatic Tachycardia Syndrome (POTS). 2012 Aug: 80(8): 458-62.

[2] Raj V, Haman K, Raj S, et al. Psychiatric profile and attention deficits in the postural tachycardia syndrome. Clin Auton Res. 2004;14:309.

[3] Roger, M. Dysautonomia and Psychology: Can they coexist? 2012. http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox  "

I have had many other encounters with misinformed, dismissive, and just plain rude medical "professionals," but this was the proverbial straw that broke the camel's back. I was not as familiar with the other doctors and nurses who exchanged similar sentiments, but quite frankly, when it comes from someone who has taken care of and known you for your entire life, it becomes 100-fold more personal. You start to have serious doubts about whether or not you are actually ill, and not just a hypochondriac. But having had 4 pacemaker surgeries by the age of 8, illness and hospitals were things I avoided like the plague. I really did not need another reason to be sitting in the waiting rooms. 

I have not sent this, and I don't think I will. But, if you happen to be reading this and do not think POTS/ Dysautonomia are legitimate, physical problems, I encourage you to contact me. I will gladly rehash this entire letter, but I can't guarantee that it will be as civil. 

Good day to you,

Sydney

               

   

The 10 Commandments for Interacting with the Chronically Ill

I LOVE my friends and family. Y'all mean the world to me, and I'm not sure where I would be without you. But sometimes, communication can be difficult. So I'm going to help you out!

I ran across "The 10 Commandments for Interacting with the Chronically Ill" by Susan Williams, and HAD to share! Below are the text and video versions. I could not have put it any better myself!

The 10 Commandments for Interacting with the Chronically Ill  by Susan Williams 

at http://www.anapsid.org/cnd/coping/looksick.html 

1. Thou Shalt Not Imply That We Are Not Truly Ill.You will not convince us otherwise with remarks such as, “You LOOK good,” or “But you don’t LOOK sick.” Even if you meant them as compliments, we perceive those kind of statements as insults because they imply that you do not believe us.

2. Thou Shalt Not Imply That The Illness Can Be Easily Fixed.People with chronic illnesses are persistent, if nothing else. We hang on, day after day. We see countless doctors, take numerous medications, do endless research, and continue hoping that the answer is just around the next corner. So please do not insult us by delivering diagnoses, remedies, or comments such as, “Why don’t you just...” or “Have you tried...” or “You should....” If it truly were that simple, I assure you that we would have done it already. We are sick, not stupid.

3. Thou Shalt Not Imply That We Brought This On Ourselves.We did not choose to become ill, just as we do not choose to stay ill. Simply having a positive attitude is not going to solve our problem. One would never imply that a quadriplegic chose such a trial for themselves, or could get better “if they really wanted to”. Please afford chronically ill patients the same respect.

4. Thou Shalt Not Insult or Argue With Our Limitations or Behaviors.If people with chronic illnesses push ourselves too hard, we can suffer serious consequences. Most of us have developed coping mechanisms to help us survive, and it is cruel to expect us to do more than we are able. One chronically-ill woman I know was actually told, “I wish I could have the luxury of sleeping all day.” Believe me, we would much rather be out working, playing, spending time with loved ones, participating in normal activities.

“Sleeping all day” is not a luxury for us – it is a critical necessity, one that we must take in order to protect whatever remaining health we have. Perhaps it may help to think of it in terms of being one of the medications we need to take. If you wouldn’t think of denying a diabetic their insulin, then don’t think of denying the sufferer of a chronic illness their critical need, whether it is a mid-day nap, avoidance of certain foods or environmental factors, or something else.

5. Thou Shalt Not Imply That You Can Relate To What We Are Going Through.Unless you have a chronic illness of your own, you cannot possibly understand just how much suffering is happening. Of course you want to be compassionate and want to relate to people. But when you try to do this by telling a chronically-ill person that you are always tired too, it tends to make the person feel that you are minimizing their suffering. Try saying something more along the lines of, “This must be so hard for you,” or “I can’t imagine what you’re going through.” It really does make a difference to us.

6. Thou Shalt Be Mindful Of Other Family Members.Chronic illness doesn’t just affect the person who has it, but the whole family as well. The trauma of the illness can evoke feelings of fear, depression, anger, and helplessness in all family members. The balance of family dynamics will most likely change, especially if it is a parent who is ill. The healthy spouse may end up taking on an overwhelming amount of responsibility, and even children will likely be involved in helping care for the ailing family member. Please keep these others in your thoughts as well, and make an effort to direct some special attention to them, without any mention of illness or disability.

Individual family members adjust in different ways and at different paces. All members might benefit from counseling to help handle the stress involved, and each family member also needs to have time to pursue their own individual interests. External support from friends, neighbors, extended family, religious institutions, and support groups may help ease some of the burden.

7. Thou Shalt Acknowledge Our Efforts and Celebrate Even Our Small Successes With Us.For the chronically ill, any day that we can accomplish a task, no matter how small, is a “good” day! Our lives are often measured in terms of doctor’s visits and lab work, and our “success” measured by a rise in Natural Killer cell counts in our blood, or actually completing an entire load of laundry in just one day. Please do not look at us as if we are joking when we share these celebratory moments with you. Celebrate with us, be happy with us, and do not kill the moment by announcing that you just completed the Ironman Triathlon in record time.

8. Thou Shalt Offer Thy Specific Help.There are so many ways to help -- the most difficult part is usually getting a chronically-ill person to accept that help. They do not want to feel like a “burden”. If you offer a vague, “Call me if I can help,” the call will probably never come. But if you are sincere, consider extending offers of specific help, such as a ride to a doctor’s appointment, or picking up a few groceries or the dry cleaning. These activities can be done in a way that does not add any extra burden to your own schedule. If you have to go to the grocery store for your own family, it really isn’t much extra work to grab an additional loaf of bread and jug of milk. If you have to swing by the post office, getting an extra roll of stamps or mailing an additional package isn’t much extra effort for you – but it can save a chronically-ill individual a lot of time, energy, and exacerbation of symptoms.

9. Thou Shalt Remember Important Events.I’m not just talking about birthdays and Christmas. A major doctor’s appointment, lab test, or new medication are all important events to the chronically-ill person. Try to sincerely ask, “How was your appointment? How did the lab test go? How’s your new medication?” The chronically-ill person will appreciate that you remembered, and that you cared enough to ask about it.

10. Thou Shalt Get To Know The Person Behind The Illness.The illness may be a part of us, but it’s not a part of who we ARE. We want to be known as more than “that sick person”. You may discover that we have a wickedly funny sense of humor, a creative imagination, musical talents, or any number of things that better describe who we are, and what we would rather be remembered for. (It makes for better gift ideas too -- rather than presenting us with yet another self-help book on the power of positive thinking, now you can give us a CD from our favorite singer or movie of our favorite actor instead.)

Most of all, please remember that the chronically-ill person is more than worthy of love, friendship, and support. 

Most chronically-ill people I know are the toughest nuts I have ever met. Indeed, I have come to believe that a chronic illness is not for wimps – rather, only the toughest of the tough can continually face the struggles of life while battling a debilitating disease. That kind of grit deserves nothing less than pure respect and admiration, even from our toughest critic -- ourselves.

And the YouTube video by KristyRadio! 

Thanks SO much to all my friends and family for sticking with me through the thick and thin. You are awesome!

Sydney :)