Hypochondriasis, a side effect of lifelong JRA or a result of "The Burden of Knowledge?"

JRA has many mysterious and overlapping symptoms. However, figuring out if your symptoms are related to your JRA, or just typical human being symptoms can be challenging. Having to decipher this puzzle of symptoms your entire life can lead you to become a hypochondriac.

I haven't always been a hypochondriac. I can imagine that my parents were pretty on top of any swollen joint, cough, cold, pain or symptom when I was child. When my knees were swollen we'd go see my doctor and usually determine my JRA was flaring and try a new medicine. When my eyes got blurry we would see my eye doctor and determine that my uveitis was flaring or during one scary weekend, determine my glaucoma was uncontrolled, leading to emergency eye surgery. When I was feverish and weak one day, I visited my PCP and learned that I had the flu. Recently I had SI joint pain, I thought it was from a fitness injury (that's what I get for getting in shape) but as it turns out there is inflammation around my SI joints, caused by who knows what. So you can see, typically in the past when I have had a gut feeling something was wrong, it usually was.

Compounding this precedence is my tendency to go to "the bad place," very quickly. I'm not sure if this is an Italian trait or just me being dramatic. But basically it works something like this... My puppy was lethargic and had a swollen stomach one night, and I went from thinking he had a stomach ache, to a bowel obstruction to a rare fatal dog disease called "Bloat" where their stomach twists in on itself. This happens frequently throughout my life; my husband doesn't answer his phone in an hour = he's been kidnapped or is passed out on the floor in a coma, I have stomach pain= I have an ulcer or appendicitis, I have an ingrown toe nail= my toe is going to get infected and cause total body sepsis. You get the point.

I was recently watching the T.V show Scrubs and it was an episode where the attending doctor, Dr. Cox (a very brash, frank, no BS kind of guy) had a baby and was over reacting about a cough. The pediatrician said to him that he has "The Burden of Knowledge," meaning he knows too much based on his profession and unless he "gets a handle on it" it will torture him. I feel like this is part of my problem. I have had too many personal experiences involving pain or illness leading to actual infection, inflammation or complication that I will forever be sticken with "The Burden of Knowledge."

However, I know I need to get a handle on this for the sake of any future children. With my developmental and clinical experiences as a pediatric occupational therapist, as well as my personal experiences with JRA, together with my husband's education as a nurse and nurse practitioner...our future children will stand no chance. Every developmental milestone they don't reach on time, or symptom that could result in a myriad of illness, I will go to "the bad place." So how do you rid your memory of a life of symptoms and years of studying and clinical experiences? I am not sure, but I am going to try to find out how...

Appointments before sunrise

I am not a morning person. I use to easily sleep till eleven as a child and college student. You would not want to talk to me during breakfast before high school and I still need my coffee before I can smile each morning. Therefore having to wake up at 5.30 am this morning to make it to my 6.40 MRI appointment and 7.45 eye appointment was not enjoyable. However, scheduling these appointments so early was my idea, in order to make two appointments back to back and still be at work before my first patient arrived. So I rolled out of bed before the sun rose and started the expected 30-45 minute ride to the hospitals in my city. However, some of you may have heard of the recent weather we have been having...

On the right is a picture of the current streets in my city and the left is my actual backyard. Needless to say traffic was not good and I was 20 minutes late. Luckily, they saw me right away and I made it to the MRI successfully (I'm investigating SI joint pain) and then my eye appointment on time (read about my JRA background and eye disease here). As I was negotiating downtown traffic in the snow, parking in one garage, walking in between two different hospitals, knowing exactly where I needed to go, I thought that my JRA has indeed taught me some valuable skills. I know many peers who will not drive into "the city" because it overwhelms them, or who would have taken the whole day off for these appointments. I feel fortunate that I have never been nervous to drive in the city (as soon as I got my license I drove to my own appointments) and that I can negotiate hospitals and appointments before I have even finished my morning coffee. So I was off to work for my 10 hour day. Today definitely felt like two days in one, but tomorrow is another day and more importantly a day I can sleep till 11!

Go Patriots!

I love Sunday mornings. There is nothing better than bacon, eggs, pancakes and coffee. I love Sunday morning acoustic radio programs and more coffee. I always feel simultaneously more relaxed and productive on Sundays. And to make today an even better Sunday morning...

bleacherreport.com

It's the Superbowl! I love football season and I love my Patriots. I used to name my stuffed animals after Patriots players ("Teddy" Bruschi) and I once waited in line for over an hour (on crutches post knee surgery) to meet Bruschi. 

The Patriots have been through a lot this year and they will be better for it! 

My whole family is ready for the superbowl! Including my puppy.

Go PATRIOTS!

allgrownupwithjra.blogspot.com

To tell or not to tell...

This topic has been something that I have struggled with internally for many years, but have not been able to put into words until recently. I always knew I wanted a career in healthcare since a young child. Having to deal with doctors, therapists and medical professionals my entire life, I felt comfortable in that setting and wanted to help others in a similar way. For a variety of reasons my education and experience led me to choose occupational therapy as a career. I wanted to be able help the entire person, family or child, both physically and emotionally, to help them enjoy their lives.

Which is why it is ironic that I find it stressful and am unsure of how to discuss my Arthritis with my employers. I have had a handful of jobs since earning my degree and I currently work for 3 different companies. One employer knows a small amount about my JRA, enough to be flexible with my schedule and caseload when needed. Another employer knows nothing about my JRA, because it has never conflicted with my employment or work performance in that setting. And the third is a new position and I have not discussed it yet. Legally I know that I can not be discriminated against as a result of my JRA but does that really stop prospective employers initial reactions and thoughts? Even working in the healthcare field, I worry that employers will anticipate extra time off, see physical limitations or have reservations about hiring someone with potential health problems. As a result of these concerns, I almost never mention my JRA to employers in my interview and I wait until I demonstrate my therapeutic skills or build a rapport with my supervisor before I discuss it. Which is a shame! Because I do think that having JRA helps make me more empathetic towards my patients and hopefully a better therapist. 

I am not sure if my feelings on this matter will change as my career and work experience grows, or if this is just one of society's unfortunate stigmas that may never change. I have been fortunate to choose a career that I enjoy and can be flexible, as well as have employers who are understanding. However, I know for some people with RA, this isn't the case and they battle with the balance of working and managing their illness every day. I know I am fortunate to be where I am now and I am hopeful that I will continue to be able to find that balance of work and life in the future. 

Inflammatory Diets?

Let me start by saying that I could eat an ice cream sundae every night and never get tired of it. I need to hide candy bars from myself or I will eat the whole bar in one sitting (72% dark chocolate with a hint of sea salt). I have been called a whoopie pie connoisseur. I would like to be a contestant on cupcake wars in another life. I am currently eating one of the 4 mint Oreo cookies (truly addicting and yummy!), that I had for dessert tonight. So as a result I never would have thought I would be thinking about any kind of "RA diet."

I am also very fortunate to have been blessed with a fantastic metabolism and I have never had to worry about my weight. I can often eat what ever I like, in any amount, and my weight stays relatively stable. I often have thought that this has been my little health "freebie" since I have many other health issues to worry about. However, at this juncture in my life I would like to be on the minimal amount of medication possible to control my disease. And as I sit here after having achy knees all day, I find myself considering trying an "RA diet." 

Honestly, I have often been told to "Cut all dairy, it cured me!" "You really need to not eat gluten," or "eat these five foods and all your pain will go away." I have always dismissed these suggestions quickly. I know for many people these various diets have worked wonders and that is great! But, I personally have always thought if cutting dairy cures RA, then everyone would be doing it and I wouldn't have tried the 20+ medications I have in my life. Plus, what would I do without my ice cream sundaes! 

I still have a lot of research and experimenting to do. Do I just cut dairy or gluten or both? Do I try an inflammation diet such as Dr. Weil or another nutritionist. I am not sure what will work best for me or how long this experiment will last, but it is definitely worth a try!

And as a parting thought:

I will still find a way to enjoy my ice cream!