Some Woman Accessorize With Shoes - I Accessorize With Tubes!

As I walk through a crowded mall it seems like all eyes are on me. There are no coy stares where passerbys quickly blush and divert there attention, but instead long, obvious gawks. Occasional I will make eye contact and smile, attempting to show this innocent bystander that I am in fact here on purpose and did not get lost on the way home from a local hospital.
What these individuals do not realize is that yes, I am ill -- seriously ill but, I am also a 24 year old woman. I still enjoys spending time at MAC Cosmetics picking out the perfect shade of lipstick for fall, or shopping at Nordstrom for a chunky sweater to match my cute new pair of ankle boots. Just because my body is failing me doesn't mean I have to give up on being a young woman. When I am feeling up to it I love to pamper myself and feel beautiful, it becomes such a rare commodity when you are ill.

I think this is what throws observers off the most, seeing an obviously medically frail patient looking like an average person. In their minds severely ill individuals live in hospitals, are over the age of 80, and probably wear nothing but hospital gowns. The reality is anyone can get sick, even a 24 year old fashionista! I am not going to stop being me just because I now have to tote my own personal oxygen supply and food in a bag on my back when I leave the house! I may be attached to medical devices, but I sure as hell will still be rocking my wing tipped eyeliner, trend forward pixie cut, and my favorite pair of Mother Skinny Jeans.

Some individuals feel the need to validate their stares by complimenting me, even though you can tell sending a stranger compliments isn't something they normally do. "I love your hair!" Followed by a large, pity filled smile. While I in no way dislike these complements, as everyone likes to be told their hair looks great, I know these phrases wouldn't be directed at me if I wasn't essentially strapped to life support. So I smile and say thank you, then go about my trip. This particular occurrence will happen about ten more times before I am finished shopping.
Illness doesn't discriminate, it takes the young, the old, and the middle aged. It doesn't care if your male, female, black, white, or purple! While disease changes much about you as a person, it doesn't change your essential being, you are still you. I did not lose the personal traits that make me, me when I was diagnosis, though I did grow and transform as an individual.
I am still Chanel, the witty, impatient, stubborn, charismatic, determined, dynamic person I was before illness struck. The same girl who has always loved to get dressed up for a fancy evening on the town, or spend hours perfecting a new eye shadow technique! The only difference now is I am also a serious illness patient bound to tanks, tubes, and central lines to keep me alive. This isn't leading some sort of double life, this is simply leading a life despite disease. I felt no need to change my style to better suit the "general populations idea of serious illness patients" when I became sick, I just had to learn to work with a few new embellishments. Some woman accessorize with shoes, I accessorize with tubes! 

So next time you see a medically fragile individual out for a day of shopping know that they are still a person who wants to feel satisfaction in their appearance, just like you. They are doing there best to still be "them" regardless of the great struggles they face daily. No need for smiles, compliments, or awkward stares; we are just like any other shopper out for a day of some much deserved retail therapy.

When Your Occupation Becomes 'Professional Patient'

As I sit in an uncomfortable waiting room chair I look down at my new patient paper work. Pages and pages of information to fill out that seem to be identical to every other physicians office on the planet. These fill in the blanks have become so second nature to me I barley have to think as I jot down the information. As I quickly fill in the first blanks: full name, age, marital status, etc. I come to a screeching halt. One blank somehow always seems so much heavier than the rest: Occupation.

This word seems to sting with a sense of diminished self worth ever since losing my career to illness last year. I went from a prospering Montessori Educator, to a jobless homebody in one tragic month. While this inability to work was in no way my fault, disease had ripped my functioning body away leaving me ill-equip to preform any job function; I felt worthless, like my pride had been completely stripped. Instead of proudly filling in the occupation blank with the word "teacher," I reluctantly wrote "disabled." How did I go from a successful professional, to this fragile young woman relying on state disability for income? I had always put such weight on the importance of career that I now felt undignified, like I was making no essential contribution to society -- I was a useless vessel.

One day I found myself out with a old acquaintance. We had begun to talk about our lives, and she asked me the dreaded question, "So what are you doing for work these days? Are you still teaching?" I paused, knowing the feeling I would get in my gut as I answered her innocent query. "No, I actually am unable to work due to my illness," I replied somberly. She paused for a moment and answered, "I wish I didn't have a job. Sitting at home, sleeping whenever you want, and having no schedule, that sounds like the life!" While her comment was legitimately not meant to be disrespectful, I took a little offense. What came out of my mouth next honestly surprised even me; I curtly replied, "I am a Professional Patient, and that is a full time job."

Suddenly a light bulb seemed to click in my mind. Did I in fact still have a career? A job to which I dedicate all my time and effort? Did I have an occupation after all? I said it out-loud again, feeling my confidence grow in that small phrase. "I am a Professional Patientt." I thought about what I had said, about how true this statement rang. I played in my mind a typical day in my life; waking up to an alarm for an early morning appointment, quickly getting my medications, records, supplies, and life sustaining devices in order to leave the house. Slowly inching along in traffic to see a provider I didn't necessarily like, just to be told I needed to see yet another provider. Head off to the pharmacy after hitting the lab for blood analysis, wait to get my prescription filled, then sit in traffic again. Upon returning home I have faxes to send to physicians, phone calls to make to my insurance company, records to file, and appointments to make with new care providers. I have to do research on the new treatment my doctors want to to begin the next month, and find a company willing to sponsor me as my insurance more than likely wont approve its use since it is considered "off label."

Almost every day of the week continues like this, even weekends. While I may have plans for Saturday my 'job' may have other plans. I could find myself busy at 'work' on a cold Emergency Department bed fighting for my life after a nearly fatal infection, or dangerous medication side effect. Then there are the many times I have been 'called in' during a good friends wedding, a family vacation, or a personal event I have anticipated for months. While comparing my schedule to that of a traditionally employed individual I realized that I most certainly was participating in a sort of profession. I was not a useless individual solely because I couldn't work a conventional vocation. What I originally considered was having no occupation, was actually an occupational change. I went from a full time teacher, to a full time patient, busy with the management of my health care and well being. This position was one of great value and importance to not only myself, but to the people who surrounded me -- I was contributing to society after all.

Yes, being a "Professional Patient" truly is a job, and a tough one at that! You work long hours for a boss who cares nothing for your personal life, who forces you to go to the same meetings over and over again, who schedules prior commitments without your knowledge, and worst of all calls you in on holidays, weekends, and even your vacation time. You often are made to work horrible hours; late nights, early mornings, plus constant overtime. Illness is a boss that shows no mercy -- and it doesn't even bother to pay decently. Actually, you are expected to pay out of pocket, spending all your savings on this tasking position you didn't even apply for.

So, while I may not be able to work a traditional nine to five, I absolutely have an occupation; one that requires much time, effort, precision, and responsibility. When I now sit down in those uncomfortable waiting room chairs to fill out the dreaded new patient paper work I no longer have a lump in my throat. When I reach the occupation blank I can write with satisfaction that I am a "Professional Patient."

What I have In Common With A Toilet - Health Update

I have been doing a lot of thinking lately, thinking about my illness and the reactions I receive for not being able to eat. I decided in this post, which was going to be just a health update, will now also act as an explanation of exactly WHY I can not eat. It seems to me there are still many individuals who don't really understand this concept, and worst of all even pressure me to eat. Let me start at the beginning: my digestive system doesn't function like yours. It is out of order; like a toilet that doesn't flush. Would you use a toilet that doesn't flush? The answer is no, and the reason is because it would get backed up and overflow. This is what my system does. Sure I COULD put food into my body, but it will inevitably back-up and overflow (vomit!) Scleroderma causes fibrosis (scaring) of the soft muscle tissue. The entire digestive track from your esophagus to sphincter is soft muscle tissue. That's one big wiggly worm that is now made of stone. My esophagus is completely paralyzed, it has absolutely no movement. The rest of my system, stomach, small bowel, etc is severely delayed which causes an inability to digest. While I physically cannot swallow solid food because it would get lodged, I could definitely swallow thin consistencies. So why don't I? Why not have some ice cream every now and then? ...It will not digest! My small bowel doesn't work almost at all, this is where 90% of your digestion takes place. With this non functioning organ you cannot make stool properly. You literally will poop undigested food whole. This is a very unpleasant phenomenon that I will not divulge into to much detail for your benefit. Then there is the non working stomach, food wont even pass. It sits in your tummy for hours to days just rotting there, giving the feeling of constant food poisoning until your body finally ejects it through your mouth. ...So do you still think that ice cream is worth it? No.
I have had so many individuals try to coax me into eating, "Come on, one bite wont hurt!" or "It's thin you can swallow it!" What they aren't grasping is one bite in fact will hurt, and while yes something may be thin enough for me to swallow I cannot digest it, causing extreme discomfit for days at a time. Perhaps my least favorite is when people see me with food that I am bringing home to my husband, then implying something along the lines of, "Good on ya! Show that disease whose boss!" Like the act of simply trying to eat will make my digestion better. That is like telling a Diabetic, "You don't need that insulin, it's giving into your disease! Good for you for not taking it!" Just like me, Diabetics have an organ that DOESN'T function, not taking their insulin will only hurt them, similarly, eating food will only hurt me.

Now that that is all cleared up, lets move onto my weekly health update. Monday night I had a Sleep Study preformed at a hospital down town Seattle. This is a test that involved being hooked up to a ridiculous amount of electrodes, machines, and other devices to monitor your sleeping habits, oxygenation, carbon dioxide, and brain activity. The reason behind this study was mostly to look for the possibility of Sleep Apnea, but also to monitor my carbon dioxide levels since my diaphragm doesn't function adequately. Basically, they want to make sure I am not poisoning myself while I sleep. I also have very poor sleep habits, restless legs, teeth grinding, waking every ten minutes, extreme restlessness, and morning fatigue. We are hoping this study will give my Pulmonologist and Sleep Specialist a better idea on exactly what is going wrong in my body at night so we can improve these poor habits. A good nights sleep is extremely beneficial for someone in my position, and I almost never get that satisfaction, Upon entering the study room I was pleasantly surprised! It looked much like a upscale hotel, it even had a fancy tiled bathroom! The bed was large, the room was peaceful, and my sleep tech was very easy to work with. After all my equipment was attached, which equaled about 45 minutes of electrode placement, it was time for the study. Literally all I had to do was lay there and fall asleep. The tests results in so much data that is take weeks to accumulate so I wont actually find out the results till the end of October. Unfortunately it turns out I was allergic to the tape and adhesive they used to secure the electrodes so I had quite the crazy facial rash for a few days after the study! Here is a silly picture of all my equipment!

Lookin Fab at the Sleep Lab! lol  ;)

Wednesday I was off to an appointment with my Primary Care physician. This particular doctor knew me way before I became seriously ill. She has been my family doctor for close to ten years! I never really saw her for more than sports physicals and yearly check-ups though. Now I see her pretty often since the ER's always make a follow up appointment with your PCP after a visit! lol She is wonderful though and stays very up to date with all my other specialists. She even gave me an Advanced Care Manager to assist me with my health care! She is also wonderful and has been so helpful in setting up infusions, order home healthcare, and just checking in from month to month. At this appointment we mostly talked about my recent ER visit for the suspected Stroke. She definitely believes I had a TIA (Mini Stroke) as opposed to the Hemiplegic Migraine, though she said only time will tell for sure. She prescribed a small dose blood thinner to be started, one I have actually been on before but stopped taking about a year ago... Guess I shouldn't have stopped! haha She also prescribed weekly Saline Infusions since I am having such a heard time staying hydrated. Hopefully those will start as early as next week! We just have to wait for the approval from insurance which as you know can be very slow! (I am still waiting for the Cytoxan approval that was prescribed last month!) Last but not least we ran a bunch of blood panels. I was kind of sad because my favorite phlebotomist wasn't there today... I always love chatting with her!

I finally received the notes from my visit with my Consulting Rheumatologist from UCLA. He always has the best transcribed notes that in detail account our visit, as well as his interpretation of my latest tests and procedures. Much of the notes were similar to the information shared with me in office, though there was one test that he views after our meeting: my latest HRCT (High Resolution Cat Scan.) As you know the HRCT is extremely important for a Scleroderma Patient as it gives a clear picture of what is happening inside the lungs. My Pulmonologist who had the test preformed said he thought the test was clear, but according to my UCLA Physician the test was anything but. This is why I am SO glad to have him on my team! He knows exactly what to look for and how to aggressively combat these issues due to his extensive research into this disease. According to the notes there was early "ground glass, fibrosis or honeycombing in the lower lobes of both lungs." Those terms are simply names for radiology findings of specific types of scar tissue in the lungs. What this means is that the scar tissue (fibrosis) that has found its way into my skin, blood vessels, and most recently my digestive track, is now starting to manifest itself inside my lungs. This is called Interstitial Lung Disease, a type of Pulmonary Fibrosis caused by Scleroderma. With Systemic Scleroderma on a path such as mine it was only a matter of time. There has actually been a few studies done showing that esophageal involvement directly correlates with lung involvement. (Study found here!) The more severe the esophageal involvement, the more severe your lungs will be involved over time. As I have complete aperistalsis (paralysis) of the esophagus I can only imagine how bad my lungs will get if we do not attack this fibrosis immediately.
If left untreated progression and death are imminent, however; with proper treatments such as Cytoxan, fibrosis in few cases can be halted. While you cannot fix previous scaring, halting progression is a great goal! This new scaring of my lungs is the reason why my recent Pulmonary Function tests have been so poor. Hopefully I will be one of the lucky patients that finds great results from Cytoxan!