September 30, 2009

Bizarre Barometer

Barometer - n. Definition: an instrument used to measure atmospheric pressure; changes in which can indicate high or low pressure fronts and related short-term weather predictions.

A barometer typically measures pressure by the effect it has on air, water, or mercury...or my sinuses.

I'm sure we've all heard the stereotype of the old lady who gives emphatic weather predictions based on an ache in her arm where she broke it 15 years ago in a fall and to this day uses it as a fool-proof meteorological tool (why aren't the news stations using her for their forecasts?).  As some of us have gotten older, we may even have come to the depressing realization that this phenomena is based on reality.  My whole family knows when the rain will hit based on our inflamed joints and I usually have a hunch when it might snow.  But in the past year or so I've got a new one - weather fronts.

Last night was a particularly bad one.  In fact, when it happened I wanted to get on here and write to you about it, but was too busy being incapacitated by pain (sorry y'all).  I've had it happen a few times before, where I can literally feel a force pass from one side of my body to the other, bringing migrating sinus pressure with it, but those instances were usually more startling than painful.  When last night's front came through suddenly, I had a pain start in the back left of my skull.  The pain, which was in a very thin but intense line, began to spread toward the top of my head, so I gulped down a few ibuprofen as fast as I could and made my way back to the sofa.  The ache was so intense and sudden that I actually began to check myself for stroke symptoms!  I felt flushed and wobbly, and was so stricken by the sudden onset and intensity that I found speaking challenging.  The line of pain continued to spread, and finally reached my face...sliding down my forehead, behind my left eye, and bottoming out in the sinus cavity below.  Thankfully, I recognized the type of pressure-pain behind my eye and in the sinus space as the kind I get when there's a pressure change and realized that's what was behind the whole headache, and calmed down. 

As relieved as I was that I wasn't having a stroke or seizure or something, my pain persisted.  (As a side note, I find it interesting that this line of pain basically followed my "coup de sabre" - a linear area of scar tissue from scleroderma, often on the head and face.)  I continued to have a severe headache with intense and focused pain, as well as sensitivity to light, nausea, and going from feeling hot to cold.  I curled up (well, flopped over, really) on the sofa, slid a book over my face to block as much light as possible, and shivered until my husband came home.  I wasn't able to get up and turn off the fan or even steal the blanket next to me from the dog and cover myself, let alone go to bed and lie in the dark there.  When Shawn came home he immediately bundled me off to the bedroom, keeping the overhead light off of course.

This morning, feeling less than perfect but greatly improved, I began wondering if this is in fact a migraine headache.  I've had similar symptoms before on scattered occassions, but never really pursued things with a doctor.  I orignally dismissed this idea because I felt I knew what caused the onset of this headache and migraines are supposed to be a mystery, but then I realized maybe the pressure change triggered a migraine (as in, they are not mutually exclusive).  I don't know if this is a legitimate medical analysis, but it sounds viable to me.  So, I plan to pick up a small bottle of Exedrin the next time I see it, and try that if I get those symptoms again (intense pain, sensitivity to light, nausea, and maybe feeling hot or cold).  We'll see. 

In the meantime, I'll be happy to provide weather predictions to anyone in the area via text message for 50 cents per message...if you want temperature predictions from my mother's recently broken arm I'll include that too, but that'll cost you extra:)  Maybe I'll seek a contract with AccuWeather...

September 23, 2009

Physical Manifestations of Emotional Stress

This is my attempt to take what could become a pity-fest and turn it into a productive blog post:)  I'm feeling a lot of stress and anxiety, but I think if I write about it with you (I feel like I write WITH any readers, not TO you), I'll force myself to turn it around a bit.

I guess lets begin with what is stressing me out.  For anyone who missed it, my parents have had some medical emergencies in the past two weeks.  My mom fell and broke her arm, my dad's doctor 'accidentally' saw what seems to be kidney cancer (see previous post for a different take on this), and then my mom was admitted to the hospital with yet another cellulitis infection (she's home now).  While I thought I was handling those things very calmly, it took me a few days to realize that I was actually pretty worked up under the surface.

Having been out of work for a few months (my old parttime job ended in June and I don't start my fulltime "career" job until October), I've had perhaps a little too much down time.  Naturally, Shawn's been at work most days, and my two best friends are living in New York and North Carolina, so I've had a lot of time to myself.  I tried to find projects for myself to occupy my time, but even so I ran out of valuable things to do...and found out that when I have too short a to-do list I don't get anything done at all.  A few weeks - even a month or two - of a break would have been nice, but almost four months is a bit too much.  So by now I've begun to go a little bit insane with cabin fever (without income I don't have the resources to do day trips or anything with all my spare time).  I feel like I have a perpetual state of brain-fog (common among certain chronic illnesses, most notably Fibromyalgia).  I might start off to do something only to forget what it was halfway across the room.  In the end I give up and return to my seat at the computer, adding to a general sense of uselessness and hopelessness.

At the same time, we're now getting close to the start of my new job.  All summer, work seemed so far away.  Suddenly, it's almost here.  I've begun receiving items in the mail from the company pertaining to my first days.  Now all the things I have to do before then are building...I did as much clothes shopping as I could afford so far (I need professional clothing) but I still don't know what I'm going to wear my first day, I didn't lose any weight all summer despite my best intentions, the house is still just as disorganized as it was when I graduated, and above all I need to get myself in the most stable place medically as I can.  What I mean by that is getting my internal clock set to fall asleep at night and wake up in the morning, as much energy as I can build, as hydrated as possible, and keep my blood pressure as regular as I can.  If any of those things are off for my first day, I'll be behind the 8-ball from the get-go. 

I know it sounds like I'm being dramatic, but with the excitement of the first few days my adrenaline will be pumping, and that stimulates my dysautonomia.  If that happens, my blood pressure can drop and my heart rate spike, making me woozy at best and pass out at worst, I can quickly become severely dehydrated, get headaches and worse brain fog, and become exhausted.  And that will make me far more susceptible to colds and viruses.  These are very REAL physical ways my body reacts to excitement and stress.  I don't know what to expect in many ways with this job, at least from a logistics and practical perspective, and that increases my anxiety.  I know where I'll be going the first few days but not what to expect, and as fast as I begin to feel comfortable with getting there I'll be sent to a client site in a new location with a new team of coworkers, so everything I'm going through now I'll sort of be going through twice in perhaps a week's time.  I'll have to make decisions about health insurance that I don't feel capable of figuring out, and I already have multiple doctor appointments scheduled for November that I'll have to work out with my coworkers...when I find out who they are and where we'll be working.  I have to travel for a week of training also in November, and while I'm looking forward to that too it poses concerns about maintaining a stable health situation.  Thinking about the post I wrote only earlier this month about being in a stable place that is sought by so many of my chronic illness peers, I can't help but face the uncertainty of my conditions which threatens that very achievement.

Sigh.  I think I'm failing at bringing this to a more positive or at least proactive conclusion.  Maybe I need to dwell on it just a little more, or see if I can resolve some of this brain fog.  Ok please forgive me for this depressing post, and I'll try to come back soon and bring it full circle as I had intended.  If it's really too depressing, read my previous post about God's grace, it's far more upbeat:)  I guess today I really just needed to express my concerns and realize that I can't solve them right away. 

WAIT!  Maybe that's it!  Maybe that's my proactive conclusion.  Sometimes the best we can do is mourn over our problems, accept them for what they are, then try to move past them.  Aha, brain fog - 0, Jen's reasoning ability -1 (but just barely).  Ok guys.  I'm still sorry this isn't as encouraging as I set out to make it, but at least there is a conclusion.  I've enumerated my stressors and realize that I can't fix most of them right now.  That's rather foreign to me, I'm a fixer by nature.  I try to fix everything, solve every problem, all the time.  I can't solve these.  But accepting that helps free me from their clutches.  What will be will be...if I do whatever I reasonably can to reduce risks, the rest is in God's hands and I have to let go.  Wow, I don't think I've ever actually felt so free after saying that before. 

God, here you go - I'll do my best and the rest is up to you.  Thanks in advance.

September 21, 2009

Seeing God's Grace in Bad News

(I write as a Catholic, but with a broad religious education that helps me dialogue with other Christians, Jews, Muslims, and as many other denominations as I can.  This post will resonate with most monotheists, but I think it could have value for anyone regardless of your proclaimed religious position.)

In Christianity, we refer to "The Good News".  Jesus brought the Good News to us, that God loves us and we can be redeemed so we might join Him after our mortal lives are over.  Mass and other religious services are opportunities to spread the Good News formally, and in our own lives we are encouraged to do the same through our actions.  However, while God's nature is partly revealed to us in the Good News, that is not His exclusive residence.  He reveals Himself to us everday in countless ways, through blessings and beauty, but also through pain and fear.  And, it is in these ways that we can truly see His grace.

I mentioned a few times now, I think, that my dad most likely has kidney cancer.  I say 'most likely' because so far doctors have told us they are 90% sure that's what they are seeing, and it won't be until his appointment in over a month with a nephrologist that they may say 100%.  However for simplicity's sake in this post, let's just assume that's what it is.  This small cancer 'spot' is possibly a budding tumor on my dad's fact, it's so small I'd really just call it a cancer cell bundle. 

A few weeks ago, my dad had an MRI done on his spine in relation to back and leg pain that has been plaguing him for quite some time.  In reading the MRI, someone noticed a small spot on his kidney.  Initially supposed to be a cyst, the doctor ordered multiple tests to be executed quickly.  In short time, they ruled out a cyst, and began considering if it might be cancer.  After more tests and discussions with doctors, my dad finally began getting a few answers...the 'spot' or 'cell bundle' is 15 millimeters in size and located on the end of his kidney.  This is actually wonderful news - 15mm is INCREDIBLY small (go get a metric ruler and see for yourself...your ruler may not even show millimeters; if so, look at 1.5 centimeters, it's the same thing).  Additionally, the location of the cells on the end of the kidney (as opposed to the middle) is great, because it means it is possible to deal with the cancer without destroying the entire organ.  Assuming that it is cancer, it was caught extremely early.  In fact, one doctor commented that it was the smallest spot of its kind he has ever seen!

As you may already see, there is a lot of good news here even in the face of something as negative as cancer.  A 'cell bundle' of that size and location is so minor in relative terms that there are multiple treatment options, and plenty of time in which to carry them out.  My dad's prognosis is great.  However I see more than just this "Good News".

Think of how they caught this spot...on an MRI of his spine.  A close friend of mine used to work as a tech for an MRI location, and has a lot of experience looking at these images.  When I told him this story, he interupted me with surprise that it was noticed on the spine MRI.  When I told him how small the spot was, he interupted again in shock and declared my father incredibly lucky.  I totally agree.  I don't know if you've had a chance to look at any MRI images, but they're pretty tricky to read in the first place.  Obviously a trained technician or doctor has an easier time than I do, but even with the proper training it's not an easy task.  The location of the kidneys relative to the way the spine is being imaged in an MRI usually makes them appear as a mass in the background, nothing more.  To have been able to see the spot on the kidney that clearly is remarkable in itself, and frankly to have had someone reading the images pay enough attention to see and make note of the spot is almost unheard of.  Normally, this kind of cancer would not be caught until it was much farther progressed.  If someone were 'lucky', the tumor would have grown large enough to cause discomfort that required imaging tests, and if unlucky, they wouldn't look for and find cancer until the kidney and possibly other organs were being destroyed.  My dad is more than lucky, he has experienced God's grace.

A number of people in my husband's family have been diagnosed with different cancers - breast, lymphoma, and stomach.  Naturally, we've all been affected by their experiences.  So far all are doing reasonably well, and I could go on about how they too have benefited from God's gift of grace.  But I have to think my dad's case is the clearest example.  He and my mom are not in any position to handle the types of treatments and situations my inlaws face, and I believe God knew that, and that's why He had the MRI show the kidney so well and the person reading it be so attentive. 

So, in this instance of "bad news", of cancer in the family, of potential surgery, we have SEEN God's grace and lived His goodness.  We all know He will carry us through our trials (whether we all believe it or not is another story), but this time we're also seeing Him rescue us before we get too far in. 

Personally, I love the TV show "Roseanne", and just last night one of the most moving episodes was on.  In this episode (one of the last ones in the entire series), Darlene gives birth prematurely to a baby girl at only 28 weeks into her pregnancy.  Despite bringing in LITERALLY the top doctors in the world, nothing can be done to help the baby besides keeping her on a respirator in an incubator.  Darlene and David decide their child "deserves the right to experience life not hooked up to all these machines".  By unplugging them, they will give the baby a chance to survive on her own, or pass on.  When the baby is disconnected from the machine, all the women in the family take turns holding her and telling her inspiring things.  When it's Jackie's turn, she tells a story about when she was a little girl and started to fall out of the car as it sped down the highway.  She recalls seeing the pavement rush closer to her face, when all of a sudden her mother grabbed her and pulled her back in the car, and she tells the baby that if she feels like she too is falling away, not to worry because they'll pull her back.  In this life, as our souls speed down highways in the car that is our mortal body, we need not worry when we feel we're beginning to fall, because God will pull us back to Him every time.

September 18, 2009

ReBlog: "How NOT to Be an Ally to Persons with Disabilities"

Click on the post title or copy and paste this url:  Reposted with permission.  "Moodybpgirl" made the following post for Invsible Illness Awareness Week this year on her blog titled The Other Side of Madness.  The post focuses primarily on II sufferers with handicapped parking tags and how they are sometimes judged by others.  While this is not an uncommon discussion topic in the II world, "Moodybpgirl" put a somewhat different view on the situation, and included ideas for good ways to handle the situation (again, proactive optimism!).  Take a look, I think you'll like it:D

A Simple 5-Step Plan for Family Histories

In the past week and a half my family has had some medical nightmares pop up (not unusual for us).  My mom fell and broke her arm, my dad's MRI of his back showed something on his kidney which they believe to be cancer, and then I spent 12 hours with my mom in the ER and being admitted to the hospital for yet another round of cellulitis in her legs. These things made me realize I've yet to write about the issue of family history.

What and Why?
Most people are familiar with this whole concept, but bear with me while I brief anyone who might be confused by what I mean.  Especially in the world of chronic illnesses, genetics seem to play a role in the likelihood of an individual turning up with one or more certain illnesses.  Sometimes these connections are not well understood - for example, some people link the chances of getting pregnant with twins to a family history of twins, but no one understands why or how this link may work.  Others are more direct and are passed on in the same ways as hair color, height, and body shape  Regardless, knowing, analyzing, and interpreting your family history can be immensely helpful in early detection of disease and illness.  It will take a bit of time and may raise some concerns or questions, but you have to remember to look at it with hope: by taking the time now to find the concerns and questions, you give yourself (and others) the chance to plan for them BEFORE running into a crisis!  A lot of conditions will be avoidable altogether as long as you know they're out there, and others can be caught much earlier than otherwise likely.  For example, if we knew to look for Sjogren's when I was younger, we could have taken steps to protect my salivary glands and prevent the extensive tooth decay I deal with now.  Since I have this information, at least I will be able to keep a better eye out for things like this with my children someday!  The American dream - to make a brighter future for our children with all the information we can get now :).

(Sorry, I'm a business person and I think it shows in how I approach this issue.  However, if you follow my framework I can promise you will be organized!)

Step 1: Research your family history
The point of this step is develop a list of conditions that appear in your bloodline.  There are a few ways to organize this information.  I think a good way is to list each condition that occured, who had it, and as many details as you can get (age at diagnosis, symptoms, progression of the illness).  You are likely to find that a number of people in the family had the same or similar conditions, so keep track of each person it appeared in.  In particular, doctors want to know if a blood sibling, parent, or grandparent had a condition, but if you see a trend like all your aunts and uncles had something, make note of that too.  Obviously, people related only by marriage are important people but not relevent for this project.  Remember to examine all parts of your family, both mother and father's sides (obviously, we're referring to biological parents) and each of their siblings and parents.  I think a good way to make sure you didn't miss someone is to sketch out a family tree and list information by each person's name.  This will also help you remember who's a blood relative and who was related only by marriage.  Maybe you'll need to speak to every family member, but it is worth it.  On the other hand, many families have a person who seems to know everything about everyone.  My mother is one of those people.  She can tell me who had what condition, when they were diagnosed, when and how they died (if relevant), what their symptoms were...I think she even knows what color socks they wore.  If you have a person like this in your family, congrats, this step will be a snap.  Well ok, it'll be easier.  But don't forget the other side of your family!

Step 2: Organize the information
Once you have your family's history in front of you, it can seem confusing and overwhelming.  If you don't organize it properly, you won't remember the important items when you need to (such as filling out a form for a doctor).  Assuming you worked from a family tree or list of family members and now have information listed next to each person, I recommend reorganizing the information by condition.  Read through the list of conditions or illnesses in your family, and make a new list of each one the first time it appears.  Then, go back through the raw data and record the details, especially how the person was related to you.  For example:
  • Asthma - Dad, dad's brother Joe, grandfather (dad)
  • Diabetes (type 2) - mom's sister Mary, grandfather (mom), and grandfather (dad)
  • Breast cancer - mom's sister Ally (45), grandmother (dad) (58)
Notice that I identified each person by which side they were related on (instead of Uncle Joe, I said dad's brother Joe, or listed (dad) or (mom) after grandparent to indicate which side of the family they were on).  Doctors usually want to know information in this format (without names, of course).  I also demonstrated listing age of diagnosis, which is useful in some conditions.  Additionally, if possible, this is a good chance to organize conditions into groups of related illnesses.  For example, put diabetes and hypothyroidism next to each other, or list all cancers next to each other.  This is usually how conditions are listed on a questionaire for a doctor, and will help you remember the information AND identify patterns (see Step 3). 

Step 3:  Interpret the information
Once you have the data organized, you may be able to get even a little more information from it.  As I said some conditions have a clear link...if you see someone in your family had colon cancer, you know you should get screenings early and often, or if a lot of people had heart disease you should be careful to keep your blood pressure in healthy limits.  On the other hand, the presence of some conditions may not directly mean you are at a higher risk for them, but can show a "genetic predisposition".  For example, many conditions in the autoimmune world are related. No one else in my family had Sjogren's (that we know of), but they did have other autoimmune conditions that should have indicated there was a good chance I'd have at least one.

Step 4: Effectively use and share your information
Now that you did all this work, at the very least you should take a copy of the information with you when you go to a new doctor to help you fill out paperwork.  If your family history is extensive or you have a complex health situation, you may want to give a copy of your information to your doctor to keep in your records.  If you have "mystery symptoms" you haven't been able to piece together, take your family history to your doctor and discuss it together to see if it reveals a new direction you should explore for answers.  Or, even if you are unincumbered by medical problems now, take the chance on a routine check-up to review your family history and make sure you are taking any steps to keep yourself in good health (again, if you need additional cancer screenings, etc).  Try to update the record as often as you find out new information.  For example, as I mentioned above we just found out my dad probably has kidney cancer, so I need to make sure I add that to my family history.  If you're a computer addict like me, you might want to make a spreadsheet (in Excel, perhaps) to keep all the information.  This is an easy format to make updates or reorganize the information into a more usable form.  It would also make sharing the information easier, as you can email the file to family.

A nice idea is to share the information with your family, particularly siblings (because if they are full-blood siblings, their family history is the same as yours).  If you uncovered any noteworthy health trends or important items, you should share that part of the information with other blood relatives of the affected person (for example, if you found out your grandmother had breast cancer, make sure your aunts, uncles, and/or cousins on that side of the family are also aware).  And in this step, be sure to include your own health history (when my mom found out she had the conditionat that leads to narrow-angle glaucoma, she emailed her sister so my aunt could get her eyes checked before it was too late).  And of COURSE, be sure to share the information with your own children, and encourage (maybe help) them compile a history of their other parent's side of the family.

Step 5: Your health history and family planning
Your family history is part of your own health history in a way.  It helps explain why you are the way you are (health-wise) and may project what you should look out for.  It is also important to keep a record of your own health seems it should be easy to remember everything that's happened to you, but that can quickly become a challenge.  At the least, you should have a list of all diagnoses, surgeries and the year(s) they were performed, and recurring illnesses (such as bronchitis or infections).  If you saw a question about something on one doctor's forms, you're likely to see that question again so make a note of your answer (maybe you couldn't remember if you had chicken pox, so make sure you find out and know the next time you fill out a form). 

If your family and/or personal history is somewhat scary, you may want to consider the implications this might have for you as you plan a family (for those who have not yet started one but plan to).  I know I've asked myself and my husband if it's fair to have a child, knowing what's running around in our genetic pool.  Of course, for most people the issues aren't that dramatic; you probably don't need to question having a baby altogether (and for the record, I am planning to have babies, I just thought it through).  But, you may want to see if you are at risk for things like gestational diabetes or trouble conceiving.  The family history will be important to an OB-gyn who will know what could be related to birth defects (for example, two antibodies I have with my conditions can increase the risk my child might be born with a hole in his/her heart), and what steps can be taken to minimize the risk (be optimistic, many vitamins and even medications can help...for me, folic acid will help minimize the risk I mentioned!).  The information in your family history can also help long after the conception/pregnancy/birth stage.  To use myself as an example again, I know I'm going to be really careful about my children's sun exposure (it was my trigger), and be especially attuned to any complaints they have about joints, eyes, dry mouth, or other mystery symptoms.

Have hope, you've done a good thing!
After reading all that, I am a little worried that I've dragged you down into a deep depression.  Please don't dispair!  The point of this whole post and process is proactive hope.  I call myself a "pragmatic optimist"...rather than idly wish for the best, I want to do whatever I can to make the best happen!  THAT'S the whole point of a family history.  With this information under your belt, you can take real steps toward better health and care for yourself, your family, and your children.  THIS IS A GOOD THING.  Even if you uncover upsetting items in your family history, you've taken a step toward making something better in the future.  Feel good, you've done well!

September 14, 2009

Transitioning Between the Worlds of the Healthy and the Chronically Ill

Two years ago, I interned with a major accounting firm.  For eight weeks, I pushed my illnesses aside.  With only a few minor accomodations, I basically lived the life of a healthy (read: uninhibited) person.  My internship ended on August 10, 2007.  Within a few days, I had begun the usual round of doctor visits, began addressing the issue of which medicine(s) to try, and all the long days and stress I had pushed through caught up with me and I began to head toward a flare.  It was a mac truck to the forehead...I felt like I had been diagnosed for the first time all over again.  In only 2 months, I had forgotten what it was like to be the real, chronically ill, me.  For the first time, I sat down and wrote up my thoughts, and I would like to share them with you now.

Today I went to a new rheumatologist, and emerged with scripts for three medications and one for repeat blood labs. The medicine for my dry mouth is the first step to saving my teeth, the muscle relaxant to relieve my back long enough to sleep, and the pain killer is to relieve my waking hours.

For eight weeks, I lived in the world of the healthy. I did not entirely lose myself (which in this case would be desirable) – I missed one day altogether, avoided physical participation in field day activities I would have jumped at in the past (back when I could jump), and almost invariably came home with hardly enough energy to eat dinner, and sometimes not even that. But these were minor. I wasn’t on any medications for my chronic conditions, and had in fact forgotten they were chronic at all. It was only eight weeks but that was enough time to sand down the sharp framework I usually live in. I feel like I’ve been diagnosed all over again.

Do I really need these things? Do I need all the drugs; can’t I skip the bloodwork and accept ignorance? As I say this my back clenches, and I know it’s only a matter of time before I come full circle, only this round would leave me with more permanent damage.

At least I can see the need for hope, and the skeleton of how it should look. If I go back to my customary systems of doctor visits, medication trials, and maybe even a few lifestyle changes, I do stand to gain some of the freedom I feel like I’m losing. If only I didn’t have to lose it first, or had a guarantee of its return. Irony can be unbearable, you know? I’m fighting so hard for the goal “to have a normal life, where I can do all the things I want to”. I think of all the things I have lined up for this semester at school – five classes (as opposed to my usual reduced load of four), my job, the societies I belong to, the increased work for the one I’m president of, and my favorite - developing awareness events on campus for invisible illnesses. But I have to choose between raising awareness of my illnesses and actually caring for them, because putting in the time to plan events will prevent me from trying to implement a necessary exercise routine, and staying out late to do assignments and have meetings will prevent me from having time to eat proper meals and get enough sleep. Maybe this too is temporary. Maybe one day I’ll have the luxury of focusing my energy on just awareness and self-care, with an assistant or staff to help shoulder the load. And maybe then it will be ok to say “someone else needs to work on this now, I have to go to the gym and get some sleep”. Or better yet, “time for my massage therapy”. That would be nice.

Maybe that’s what I want out of life – time. My mom’s fond of telling me that’s in my control now, I don’t have to take on what I do, I could focus my efforts down to one or two things. And it’s then that I revert inside to my ten year old emotions, and know I won’t give up my commitments or interests. I’d lose what makes me special, at least what I feel special about. It’s mine and they – it – my body – won’t take it away. I’ll probably die fighting. But that’s not much of a surprise, is it.

September 11, 2009

My Poem - Then You Would Know

I wrote this a few years ago, when I started UII and my own awareness efforts.  I'm not a very good creative writer so be warned this isn't a stunning poetic expression of my world that will instantly and miraculously put it into perspective, but it does get my point across.  And if you like the message in this, wait 'till you see my post coming up, a flashback to 2007.

Then You Would Know
(c.2006, 5 years after diagnosis)

How could you know?

If you heard the sounds of my knees – snap snap!
Like a thick twig that is crunched and cracked,

If you felt how I shake, violent convulsions from cold
When others rejoice for the break in the heat,

If you knew how I longed for days when I was like them
Fighting to go out with no jacket and play in the leaves,

Then you would know.

If your mind raced like mine to learn to adjust
To find ways to do what should be without thought,

If your heart spun like mine to try to accept
To understand why and to try to make sense,

If your head always hurt from the constant question
Of how to decide where limitations lie,

Then you would know.

If you worried like I worry about how you’ll do
The basic things in life that make it worthwhile,

If you were frustrated like I am
Over how to make people look past the apparent,

If you struggled like I do
To accomplish something that wasn’t “in spite of”,

Then you would know.

If you were constantly learning
But what you learned was another “can’t”,

If you secretly doubted what was always a given
Because of what you are no longer,

If you didn’t know how
And only knew that you must,

Then you would know.

I've Been Hoodwinked (into doing something good)!

I'm not really sure what just happened.  This person Shawn (husband) knows through the firehouse (he's an EMT) just wrangled me into agreeing to go to a yoga class.  I've only met her a few times and she worked me over in minutes!  Shawn always tells me we're a lot alike...  I've been talking about doing yoga for a while, and every time I look into it I find more and more reasons I should...and with each new symptom or diagnosis I actually find out more benefits I stand to gain.  Just to list a few potential benefits for me...stress reduction, improved flexibility, more effective breathing, improved circulation, and stretching and loosening my muscles and tendons could help reduce my tendonitis and back problems.  So I'm not against yoga, but I've always had a problem with actually going (usually schedule issues, or money problems).  So, without even knowing my sordid love-hate relationship with yoga, this person read one of the things I wrote (I think my "30 Things" post), and decided I "seemed open to trying new things" and might like this yoga class she goes to. 

So anyway, she said something about going and I said someday I'll run out of excuses and have to go...and next thing I know she's Facebook chatting with me, knocking down every one of my excuses before I even said them!  It's cheap, the teacher adjusts to specific needs and helps beginners, you can stop in for classes when you can without having to commit to a whole course, heck Shawn's even off that day and can go with us so I don't have to drive or anything.  We're going on Thursday, so I guess I'll update you all after that with how it goes.  I just can't get over how fast and deftly she worked me over...I believe Shawn had to have prepped her on what my concerns would be, though they both insist he didn't.  Hahahaha:)  It's nice to get a good kick in the butt sometimes.

Just as one last note, this person is the latest in a list of people who have approached me in some way since my "30 Things" post when I began promoting IIA Week.  It really feels good:)  Seeing an awareness initiative work and get positive responses from people renews one's faith in humanity.  Granted most the people I've been dealing with are involved in the medical world themselves and that gives them a different perspective, but that doesn't have to work in my favor, since most of them deal with emergency medicine and may see my complaints as minor.  So all in all, this is a bolstering experience so far.

ReBlog: Poem “Too Young”

Poem “Too Young”

A little later, I might share a poem I wrote once too.

September 10, 2009

A Dilemna

Ok here's a very specific example of making choices and feeling out of control.

I like country music, and around here each summer there is a special arrangement for a "megaticket"...purchased at one shot, it's basically tickets to four concerts through the summer.  I made it to the first three, but the fourth is tomorrow night.  The weather is the problem.  Our 'seats' aren't really seats...this is one of those outdoor venues that has a large open grassy area, "lawn seats", and that's where we are.  At two of the concerts we've been to this year, it did rain, but it wasn't a big was very hot out and almost fun.  Tomorrow however it is supposed to be in mid-60's at best, and obviously getting colder throughout the duration of the concert.

For me, getting cold and wet is a nightmare.  It causes immediate problems including stiff, swollen, painful joints, that pain I've talked about that radiates from the center of my bones, and headaches.  Within a short time, I could start running a fever and coughing, and by the next morning (if not earlier) I could have a full-blown cold.  And, I have a propensity for ANY upper respiratory problem to become bronchitis quickly.  And just for those who would say I'm catastrophisizing, this pattern has happened more times in my life than I care to count, whereas the number of exceptions can be counted on one hand.

It seems obvious - I shouldn't go.  However I seem to have a big problem accepting that.  I keep thinking there are ways I could bundle up with layers and wear a poncho and be fine.  Not entirely comfortable, but maybe avoid getting sick.  Why go through all that?  Control, of course.  I bought these tickets planning to attend every concert when I had a limited budget and getting them would eat up most of it, so not using 25% of it seems a waste.  A lot of people I know are going, and will probably be talking about it next time I see them.  Since it is on 9/11, there will probably be some very moving tributes as part of the show.  This is the last concert I'll have time to go to for quite a while.  Shawn even arranged his work schedule in part so he could go with me (though he did have other reasons to have the day off too).  Thinking of all these (emotional) reasons to go in relation to the (medical and rational) reasons not to leaves me trying to decide if the enjoyment of the moment would be worth the cost.  That's basically the same decision I had to make in high school when I continued to do color guard in the sun and cold, and dozens of times over the years.  I try to think of my responsibilities - I'm on the schedule to lector (read) at mass on Sunday, and having a sore throat or bronchitis would be a problem.  My family needs me for things that I won't be able to do if sick, and especially if contagious.  Getting sick with one problem makes me more suceptible to others, and I'm terrified of getting the swine flu (and the regular flu would be pretty bad too).  Considering this risk of compounding infections and how long it takes me to recover, we could be getting very close to my start date for my new job, and in that time I have a lot of things I'm responsible for getting done with my church's youth ministry program (I'm pretty much the workhorse for it right now).  All these things indicate the responsible thing to do it not take this large risk with my health.  And yet, I still can't shake it.  I'm still a 20-something kid just out of college not quite into the adult working world yet who wants to have her fun while she can, and on top of that, one who doesn't know how long she'll be able to have fun like this.  I guess the answer's obvious, and I'm a responsible person. 
It's just hard to watch my control get a little farther away.

Planning for Problems - Beginning a job

So I think we may be entering a phase with this blog where my concerns with the future seem to be coming to the foreground.  One of my concerns builds around the idea of a work/life balance.

This term, which has become a media buzzword in the past few years, refers of course to the idea that in a relatively wealthy and developed country like America, we shouldn't have to sell our soul to our employer.  Instead, we should have both the opportunity to earn enough to afford the lifestyle we want AND the time to enjoy that lifestyle.  However, this is sometimes an ideal and not a reality. 

Like most of my peers, I'll be beginning my career with one of the "Big 4" accounting firms though I'm not naming names due to the sometimes sensitive nature of financial issues.  In this world, work can be intense especially leading up to and during 'busy season'.  The 50-60+ hour weeks during busy season are enough to have me worried college, I could only carry 12 credits at a time (15 if I took a once-a-week night class).  Granted, I also worked significant parttime hours, so in all I was carrying the weight of a fulltime job, but it wasn't as much as 'normal' people could carry.  During my internship (with the company I'll be working for next month), I had one client that was 1 1/2 drive each way, resulting in 11 hour days, and I would literally get home, collapse, and get up the next morning...I couldn't eat dinner, I didn't have enough energy.  Obviously, that is not a lifestyle I can carry on for more than a couple weeks.  I'm often subject to "Fibro brain fog" - a mental fuzziness often associated with Fibromyalgia and other conditions that is sometimes worse in the morning or specific times of day, as well as during flares.  Running on fumes is almost guaranteed to bring it on.  As my body runs down with little sleep and excessive stress, I'll become increasingly sucesptible to infections or viruses, and set myself up for a nasty flare.

Obviously, there is a chance I'll be able to come through busy season unscathed.  In this blog about hope, I don't mean to sound pessimistic.  However, I can't afford to be foolish, and approach things with a "hope for the best" plan.  Instead, I need to analyze and outline what my realistic problems are, so I can make a tangible plan on how to minimize the risks and cope with whatever problems do arise to get over them quickly.  I'm a pragmatic optimist:)

So I'm working on a plan.  Sadly that doesn't totally stop me from worrying (I've had anxiety since I was a 1st or 2nd grade).  Until I actually begin my job, find out who my clients are and how they operate, and actually get into the swing of things, I can't accurately project just how tough things could get.  I've also decided I want to make a concerted effort to take advantage of as many social opportunities as possible.  My firm, like most comparable companies, hold a lot of social events as a way to foster a community among the employees, which is one of the things I love about them.  Happy hours, seasonal parties, and group volunteer events are chances to spend time with coworkers outside the office setting, and I'm looking forward to them.  I also really want to try to connect with some coworkers as real friends, the kind I can call to do things outside of the firm setting.  But, this ambition adds stress to my already maxed-out life.  Getting rest and downtime is just part of coping with chronic illness, and my entire life since diagnosis has been a balancing act between social activities and this necessary rest to handle academic and work responsibilities. 

My firm is aware of my illnesses.  As a major international company, they've developed systems for dealing with many common sticky situations, including disability rights, and that works to my advantage.  Since they have this established system, and that the nature of the job will reveal my disabilities quickly (as I need time off for doctor appointments, perhaps physical accomodations, and struggle with the times of day), I revealed my conditions quickly.  In fact, I had discussed my issues with them before my internship since I needed a couple accomodations during that time, and still received the fulltime job offer (isn't that like a fairytale?!). 

-> Just a side note...there's another hopeful note for chronic illness sufferers with employment woes.  I know many of you simply cannot work, at least not outside of the home, due to your illnesses.  For those of you more like myself, who can work but perhaps need understanding, accomodations, and's out there!  More and more companies are growing a conscience and common sense, and working with good employees who need accomodations instead of scrapping them!  And, big business isn't always the big bad wolf.  Business and morals are no longer mutually exclusive.  Certainly, there are still MANY big hurdles, and we're a loooong way from an ideal world.  But we are getting a tiny bit closer, and more so every day!

Still, I will face the decision about when and how to tell my direct coworkers when I get to my client assignment (and for each team, since auditors deal with multiple clients).  The other day I found myself explaining my handicapped tag to someone who will be starting with me next month, and I don't think I was very successful either.  It was a reminder that each coworker I try to explain myself to may have a different reaction, and not all accepting ones.  The plan I'm working on will also need to include both a part for how to explain my illnesses to people and a preparation to cope emotionally with whatever reactions I receive. 

Now, ready for the next level of concern?  Those are just my thoughts about my first 6 months or so when I begin my first fulltime, "career" job.  As I look down the road for a few years, I get to the point where I want to have kids.  Chronic illness sufferers tend to have one of two situations with pregnancy.  Some experience what is essentially a full remission, where their conditions are virtually inactive.  Others experience basically a 9-month flare.  There is really no way to predict which (if either) someone will have, and you can't even rely on having the same experience over subsequent pregnancies.  But I do know that mine will be high risk pregnancies right off the bat (if you read the paragraph in my previous blog about finding a gynecologist, you understand why), and even if I don't expect the worst I can reasonably think I will need to take precautions during that time.  My firm offers good maternity benefits, but I will still need to plan things out.  But that's ok, not that big of a problem really, because I'll do whatever I have to.  I'm more worried about what to do after a baby is born.  Ideally, I'd like to return to work after my first baby until I have a second a couple of years later, and then perhaps go to a parttime schedule or stay home altogether.  My mom was home when I was little (for different reasons), and I want to be there when my children come home from school, have extra curriculars, and need their mom to be involved at school.  I also have to think about my medical restrictions, and it is a BIG question mark if I even could handle working while raising a family.  As I said before, my life is about choices on how to be able to do my priorities, and as ambitious as I am, having a family and keeping up with them is a top one for me.  But, my concerns have to do with returning to the work force.  In this world, mom's don't drop out of the work force to raise families, at least not for more than a year or two.  The whole situation of whether to work parttime or not at all, how to keep my position and reputation, and returning to the fulltime scene if and when it works for me gives me a headache.  But, I think I'll cut myself off here before I go further into that.  In writing this up, I'm realizing I don't yet know how to really explain my thoughts on this one, so I'll wait until I can. 

September 8, 2009

AMA Draft - Building a Team of Doctors

As the school year begins, the NCAA and draft pics for teams are popping up in headlines on all the major news outlets. Like a team manager or coach, you have to build your medical team, drafting doctors who will work together on you. Instead of the NCAA (sorry, I'm a Nova Wildcat and the NCAA is very important to us), you're players are part of the AMA (American Medical Association). Instead of points scored or yards run, you're looking for specialties and concentrations in their professional experience. And instead of reaching the division playoffs, you're goal is a stronger, healthier body with a consistent care plan.

For many invisible illness sufferers, the word "doctor" can raise the hair on our necks. We've spent years dealing with dismissive doctors who thought our symptoms were in our heads, embarrassed ones who tried to make us feel stupid to hide the fact that they didn't know what was wrong, ones who were just downright rude, and one of my favorites - doctors who had "God complexes". Those are the specialists who only want the most dramatic cases where they can perform some extreme procedure and cure their patient to great accolades from their peers.

However, one of the best things we can do for ourselves is to pick through this minefield of egos, and persist through quite a few trial-and-error experiences, to build a team. When done successfully, this team can eliminate many problems.

Chronic illnesses usually affect multiple systems in the body and require more expertise than one doctor alone can reasonably possess. I'll use myself as an example. Most critically, I need a rheumatologist, but I also need a general practitioner, opthamologist, cardiologist, gynecologist, and sometimes even a dermatologist, allergist, and orthopedist. I've found that many health systems now include information on each doctor on their website that helps indicate specific conditions the doctor is familiar with, and that is VERY helpful for me. I'll also add that living near Philly is a great advantage with finding doctors, as it is the birthplace of medicine in the US and held it's leading position ever since. Other major cities usually have similar benefits, while those in more rural areas have to pretty much take whatever doctor they can get and hope for the best.

Before I go off on a tangent about the doctors I see, I just want to make my 3 points for sufferers in general. 1. A lot of doctors will be uncomfortable with the conditions you have. You need to keep searching until you find ones that ARE versed in your condition, or at the VERY least, try to learn about it between your visits and listen to whatever information YOU bring to THEM. 2.When you have a chronic illness, you may find that your general practitioner (often called a 'family doctor') won't want to treat you at all, instead sending you to your specialist for every complaint. This is also someone you need to boot from your team. You need a doctor who will be comfortable figuring out when it's a normal cold they can treat as opposed to a component of your condition that requires specialist attention. 3. Finally, in today's world of outpatient care, most doctors act fairly independently, treating whatever part of your body is their specialty and sending you along to the next doctor for the next problem, and sometimes their plans for you will conflict each other. However, YOU are one person, one body, one soul, and need one care plan. As much as possible, try to find doctors who are willing to work with what your other doctors are telling you, maybe even *gasp* contact your other doctors themselves to discuss the situation, and agree on a plan for you. This will help you streamline your life (believe me), AND will ensure more consistent care for you (helping you get closer to that "stability ideal" I mentioned the other day).

Building my Team (The rest of this post is about me personally, so if you get bored just skip it:) I'm including it because, well, it's kind of theraputic to lay it out, but also because it can give people an idea what type of choices they may face with doctors.)

September 7, 2009

The Villianization of Exercise

Or: Do What You Can, While You Can, So You Can Continue

Scenario - So you finally got your classmates/coworkers/friends to understand you have limitations. They finally stopped asking why you have a handicapped tag or why you have to take the elevator instead of steps. You breathe a sigh of relief...

The next day, you run into one of these newly-understanding people while out on a power walk. A week later, you use your handicapped tag when you both go to the mall...and suddenly your newly-understanding friend gets a smug look on their face and say something like "Last week you could walk 3 miles but today you can't walk from the other side of the parking lot? Yeah, right. I wish my doctor would say I needed a tag for when I'm tired, too."

And the emotional pain starts all over.

For some reason, in our world, it's all or nothing. Everything is black and white, no gray, no shading, no middle ground. Either you're fully disabled every day or you must be faking every day. Why is it so hard to get people to understand that chronic illnesses change day by day? So many factors affect how a chronic sufferer feels on a given day...the season, time of day, weather, emotional or mental stress, what you're wearing, what you've eaten, when you ate, how you slept, sometimes even how you were sitting earlier in the day! And that's just a partial list. That's WHY the motto is "one day at a time", after all!

I have good days. I want to be thankful for those days, but sometimes I can't shush that little voice in my head that says "better be careful who knows it". Teachers/professors are especially tricky with this one. I used to actually get nervous that if I walked across campus one day and a professor saw me, it would start a problem the next time I was a minute late for class because I had to drive between buildings or wait for the elevator...and believe me, this fear was NOT unfounded.

I have good days. I even sometimes have good weeks! I'm very very lucky; my doctors and I have worked together over the past few years to stabilize my conditions. In relative terms, they are very controlled, and progressing fairly slowly (delaying the inevitable has become a focus for me). As someone who used to have serious flares at the drop of a hat, I definitely appreciate this gift of stability. My flares were rough...sometimes lasting 2-3 weeks (not counting the gradual recovery period), and they included a whole range of miserable symptoms from complete exhaustion to muscle, joint, and bone pain that never let up, to incapacitating stomach pains. The extreme swings from high to low I had in high school would make a roller coaster look like a ride on a lazy river. It's not that I never have flares anymore, or that I feel good every day, but my flares are fewer, farther between, and often not quite as severe as they used to be. Instead of true 'flares', I more often just have a 'low' day where I don't feel 100%, but can still function in most ways. If the long term goal of sufferers is to find a cure for their illness, this stability is the short term goal of almost every chronic illness sufferer on the planet. And I've been blessed to nearly achieve it!

But that brings me back to the villianization of exercise and my opening scenario. Since I am in the most stable place I've been in most of my life, I have begun some light exercise I couldn't do before. I like to do boxing on the Wii game's no impact, cardio, and works my core and arms. Since I need no-impact exercise I have an elliptical trainer, and aquatic workouts would be ideal. However, I can't swim, nor can I afford the money or time to join a club right now. So, the primary exercise I've been doing is good old walking. Walking is actually very good for me...I walk a good distance so I work on my stamina and the motion of walking helps my flexibility and range of motion. Naturally, my doctor is thrilled. My critics, however, are not.

As an invisible illness sufferer (and let's face it, one who puts herself and her illnesses out on center stage to try to raise awareness), I spend a lot of time trying to convince people that I am legitimately disabled to an extent and have a right to specific accomodations. When they see me do something 'normal', I lose a lot of the ground I've gained. But the exercise is PART of my illnesses! "Do what you can while you can so you can continue" is how I like ot explain it. I can't run, do jumping jacks, or take a step class. But I can walk, at least on a good day, and doing so will help slow the progression of my diseases even more. So I do what I can (walk) while I can (now), so I can continue. As it is, I face the possibility of needing a hip and/or knee replacement at a young age, and the risk of being in a wheelchair a lot sooner than the average person might worry about it. By walking (within reason, I can't push it too hard or I'll damage my joints instead of helping them), I am strengthening the muscles and tendons that are a risk of being damaged by illness so they will last longer. I'm also encouraging production of the fluid that lubricates and cushions the joint.

As a side note, for anyone unfamiliar with autoimmune diseases, this is how they work. With most autoimmune diseases, and unlike AIDS, the victim's immune system is actually OVERactive, and attacks normal, healthy tissue in their body. In my case, my body attacks my moisture producing glands as well as connective tissue. As a side effect of being so preoccupied with attacking healthy tissue, my body may 'miss' the things it should be attacking (like viruses), allowing me to get sick very easily even though my immune system is overactive. And again, personally, damage to moist tissue leads to easier infections as well (think of all the parts that help keep illness at bay in your respiratory system...they're nearly all moist tissue). This is why many drugs for autoimmune diseases are actually immunosuppresants - which of course also raises the risk of contracting a serious infection. Quite a cycle.

So this villianization of exercise experience takes me back to familiar territory. With chronic illnesses, a sufferer will find themself needing to learn some lessons over and over, and one of those lessons is to know what you need and live by that without appologizing. If I'm having a good day and go for a long walk, I should be proud and thankful, not ashamed and making excuses. It may mean a longer struggle to educate others on my illnesses, but it will also mean a longer healthier life for myself in which to do that work, which is clearly worth the effort.

September 6, 2009

Lifestyle Changes Lead To "Living" Life!

Ok, I have a bit of a control issue. Namely, I don't want someone to tell me I have to do something a certain way. Suggestions, ideas, feedback...all good. But an instruction? Not so much. So naturally, and especially when you consider my age and where I was in life (a teen in high school looking toward the college world of freedom), being told "you just can't do that" for health reasons didn't sit well.

But, being at least a tad older/wiser/less rebellious (you know, entering that terrifying phase where you realize the 'old people' who told you "that's how life is" when you were a kid weren't always wrong...), I have actually made some lifestyle changes to meet my medical needs. OMG it's crazy. Guess what I found making some lifestyle adjustments, I didn't have to make as many life plan adjustments! It's so cool. There are some specific things I do as part of a routine or habit which I used to shrug off as superfluous and wasting time, but now I realize that they really only take a few minutes of my life, and allow me to continue with other things. For me, here are a few of the changes I've made.

September 5, 2009

Unlucky in Health = Lucky in Love?

There's a pattern I've noticed in discussions on Facebook and with other II sufferers. Many of us seem to have found a life partner who is solid, reliable, understanding, and willing to help us through our chronically messed-up lives. For a lot of us, including myself, we found that person at a relatively young age (younger than my contemporaries, at least), and were able to skip a lot of the usual relationship melodrama that haunts most people I know. I have to wonder, is it some kind of "balance" from "Ok I'm going to give you a challenge, and it's going to be a big one, but to help you through I'm going to make this one other part of your life much easier"?

Obviously, I'm not talking about everybody. Plenty of II sufferers are still looking for Mr. or Mrs. Right, and sadly quite a few have seen their relationships fall apart when the stress of a chronically ill significant other became too much. And I do care about these people. However part of my goal here is to remind everyone why we should have hope, why we should believe things can be what we want them to be. So, while many people have not yet found the "lucky love" of their lives, there are at least a sizable minority of us who have. Maybe we, and our "lucky loves", can serve to remind those still looking that there are good people out there, who will accept and love you with whatever baggage you carry. Everything happens for a reason, so if you're still looking or even have been through a breakup, I'm sure it's for the best, and you have to keep hope.

Having this "lucky love" is invaluable. This is the person who NEVER rolls their eyes when you say something hurts. The one who knows exactly when a joke about your illnesses is needed, but jumps to your defense in public when someone else crosses a line. Better yet, they go to the store when you can't move to get you whatever concoction you've decided to try this time around, and are glad to do it because they hope it's going to work. They're not perfect - sometimes they just have to get out of the house for a while even though you're stuck inside with a flare, and they can infuriate you when they take their health for granted. But they're in for the long haul, and when they come back from their night out with friends the first thing they do is reheat your heating pad so you don't have to get up. Remember that they've adjusted their life plans just like you have...only they didn't HAVE to. You were forced to have the misbehaving body you do, but they chose to live by your parameters. Think about that - they've given you a true love you never have to question (maybe wonder "why me" sometimes, and always be grateful for, but never question or doubt). With all those doubts buzzing around your head about medications, long term disease progression, childbirth and child rearing, careers, etc etc etc, you've been relieved of one:)

September 4, 2009

Diagnosis Trail

Everyone's diagnosis story is different. The average diagnosis time for my main condition (Sjogren's Syndrome...which is actually technically called Secondary Sjogren's Syndrome even though it's my 'primary' diagnosis because it occurred alongside other diagnoses) is 7 years and the typical patient getting diagnosed is a woman in her 40's. I was diagnosed at 15 which is very young, but that doesn't mean I was diagnosed quickly. (For reference, I am now 23.)

I can trace my symptoms back to 2 years old. At that age, I had so many chronic ear infections that they had to insert tubes to keep my ears draining. That alone is not so unusual for a toddler, but it was the first part of a loooong pattern. By 4 years old, I was experiencing intense leg pain, especially at night. The kind that kept me (and my parents) up overnight with my crying and thrashing. The pain wasn't just in my joints, but seemed to come from the center of my bones. There isn't much that can soothe that kind of pain, and at my age all they could give me medication-wise was Tylenol (I've never had much luck with Tylenol). My doctors finally did some imaging tests, but since they saw no breaks or tumors, they said I had "growing pains". These leg pains continued regularly into high school, at which point they became more sporadic (or rather, I learned to recognize the pain coming and intervene), and I still get them sometimes now.

By the time I reached school age, I was experiencing a regular cycle of infections throughout the year...respiratory infections including bronchitis, urinary tract infections, stomach bugs, and the eye problems started. Anyone familiar with Sjogren's knows the two most predominant symptoms are extreme dry eyes and dry mouth (but please don't assume that's all there is to this disease, I'll explain more later). My eyes were ALWAYS dry and gritty, I always thought there was something in my eye, and I produced a thick secretion. I constantly picked at and rubbed my eyes, which is something my classmates never understood but still remember to this day. Doctors gave me all kinds of drops and ointments, none of which made a dent into the discomfort. On top of all these things, I always felt sick in the morning when I got up for school. Many days, I wound up in the nurse's office with a stomach ache, and when I told her I did not eat breakfast (trying to eat in the morning itself made me nauseous), she decided I was trying to get out of class. I missed on average 20-30 days of class every year. My parents were my only believers, the teachers and administration tried to tell her I was a hypochondriac trying to get out of was absurd! I LOVED school. I HATED missing time. Some days I still want to go back to my elementary school, find anyone who was working there when I attended, and hand them a list of my diagnoses and symptoms.

Then I hit high school. I had joined the color guard, which participated in band camp the two weeks prior to the beginning of the school year. We spent 8 hours each day for two weeks in the sun learning our show (with few water breaks or chances to reapply sunscreen). Once classes began, we rehearsed 3 hours Monday and Wednesday evenings, had football games on Friday nights, and spent 8-10 hours on Saturday rehearsing before going to our competition for the week (we finally got home around 1am most weeks). I had not spent much time in the sun growing up, but for my family that was normal. This was the first time I had gotten a real tan! It was also the most exercise I'd ever had (I played hockey in elementary school but other than that I was more of a book worm than an athlete). I had no way of knowing I had opened Pandora's box.

It is my personal opinion, based on research and experience, that the appearance of an autoimmune condition (of my diagnoses, Sjogren's, scleroderma, and possibly fibromyalgia are autoimmune conditions) is the result of a genetic predisposition and an environmental trigger. In another post I'll discuss my family history but for now suffice it to say we are RAMPANT with autoimmune disorders, and it turns out *tada!* the sun is my environmental trigger.

So to return to the color guard story, our season began with band camp in August and ended around Thanksgiving. At Christmas time that year (my freshman year of high school, 2000), my mom noticed a small bald spot near the back of my crown of my head. It was about the size of a pencil eraser. Since I had been pulling my hair back tight for guard, we figured I probably just needed to be careful and let it grow back, but we also kept an eye on it. By Easter time it was the size of a quarter and we started seeing dermatologists. The first one we went to looked at my from the doorway of the office and said "alopecia, nothing I can do" and walked away. Later, when I looked up 'alopecia', I found out that's really just a term for the symptom of hair loss, and has NOTHING to do with the cause. Obviously we went to another doctor. In the meantime, somehow we were directed to a rheumatologist (and I had begun having severe dehydration issues, serious enough for multiple emergency room visits and one overnight admission). That rheumatologist told me to insist that the next dermatologist do a biopsy of the area. At this point he was considering discoid lupus, along with other things. So, when I went to a new dermatologist who was convinced it was discoid lupus from a visual exam, I still asked her to do a biospy anyway. Good thing, the result was localized scleroderma.

Not to get side tracked again, but I do want to clarify that localized scleroderma and systemic scleroderma are two related but very different things. My localized scleroderma was only active for a 2-3 year period and affected a specific area on my body. Systemic scleroderma affects (or can) the entire body, does not go "inactive" after a period of time, and can be fatal. Anyway once we got the scleroderma diagnosis everything sped up more. My rheumatologist was an adult doctor, and though I was 15, he said he was not comfortable treating a pediatric patient. He helped direct me to a doctor at DuPont Hospital for Children, who happened to be world-renowned and a top doctor to boot. Once I got to DuPont, that doctor and his fellow (who would takeover as my rheumatologist when the original doctor finally retired) were a Godsend. They quickly came up with the Sjogren's diagnosis (and therefore, treatment plan), and over time pieced together many of the mystery symptoms I had been coping with.

I thought at first I'd have to give up everything I had just gained - I was told to stay out of the sun, use all kinds of sun protection, drink all the time to stay hydrated, and a million other things. When I joined the color guard (remember, the reason I had so much sun exposure in the first place), I became a new person in many ways. I had just started high school, found a niche (and one I was great at!), made a ton of new friends, looked better than ever...the list goes on. I saw it all slipping away - how could I be in color guard when I was supposed to stay out of the sun and drink water all the time (as I said, we had very limited water breaks)...oh and I forgot to mention that since the season extends into November, I had to battle the cold with my stiff arthritic joints, and especially with the Raynaud's diagnosis I was told to avoid this situation as well. It seemed that all doors that should have been opening were closing - travel plans, a social life, etc etc. However, my doctors were great. They listened to my fears and helped me through the adjustment period while also helping me figure out how to hang on to the things that were most important to me.

If you don't have chronic illnesses, please understand that this is only the story of how I got the first set of answers. After that year, I had a name (well, names) for my most pressing problems, but these conditions change. Over time, other diagnoses developed or came to light, and like most people I know in the II world, my diagnoses list has grown and probably will continue to do so. By definition, none of these chronic illnesses will ever go away, so I just have to keep adding. Conditions can mask or imitate each other, which adds to the confusion and evolving diagnoses list. However, getting through this stage was crucial. It was the point at which I was able to move toward control.

September 3, 2009

30 Things About My Invisible Illness You May Not Know

1. Go here and copy the list:
2. Post your completed list.
4. Go here to reply with a link to your post and a chance to win a prize:

My List

1. The illness I live with is: Sjogren’s Syndrome, Dysautonomia, Raynaud’s, Osteoarthritis, Fibromylgia, and Localized Scleroderma. Other diagnoses are floating out there.
2. I was diagnosed with it in the year: 2001, at age 15 and about 6-9 months after starting to date Shawn (my high school sweetheart - now husband).
3. But I had symptoms since: 1988, when I was 2 years old.
4. The biggest adjustment I’ve had to make is: it’s hard to say…I was diagnosed young, and I had so many symptoms my whole life, so I was used to many of the ‘adjustments’. I guess the biggest one way mental, about how I’d approach my longterm goals. Taking 5 years to complete college instead of 4 was a BIG adjustment I had to get used to. Having been a top student it’s very hard for me to accept that I just couldn’t do it in the normal time, and many people are going to judge why that is without knowing.
5. Most people assume: I’m making things up or exaggerating the effect this has on my life. I wish there was the invisible illness equivalent of “beer goggles” to help others get what it might be like to life with chronic symptoms.
6. The hardest part about mornings are: I generally just don’t function well in the morning. I have ‘brain fog’, stomach aches, joint stiffness/pain, and usually slight swelling in my extremities. And that’s if I had a good night’s sleep…
7. My favorite medical TV show is: I kinda like Royal Pains, but that’s it. Most medical shows bug me.
8. A gadget I couldn’t live without is: well it’s not a gadget persay, but I can’t life without my sunglasses. My eyes are hypersensitive to light, I wear them all the time.
9. The hardest part about nights are: Getting to sleep/staying asleep. My newest problem is akin to restless leg, my muscles tighten up and I can’t stop moving. It lessens after I take advil. But I had a sleep study done that proved that I am not getting restful sleep, and they couldn’t even pinpoint the exact reason – which means no treatment and no relief.
10. Each day I take __ pills & vitamins: 6 not counting ibuprofen. Not as bad as it could be.
11. Regarding alternative treatments I: Had success with chiropractic and related alternative therapy, but my insurance only covers part of it, leaving me with a copay each visit that is too expensive. “Normal” physical therapy is even more expensive because it’s a copay every visit and they want me to go multiple times each week.
12. If I had to choose between an invisible illness or visible I would choose: That’s really hard. I get verbally attacked a lot for using a handicapped parking tag, because there’s nothing visible like a wheelchair or brace to tell someone why I have it. I always say I’m glad I’m not in a wheel chair (yet), but that doesn’t make my issues any less impactful.
13. Regarding working and career: This too is complicated. For small, part time jobs I didn’t tell anyone my medical issues until after I was settled in and only on a need-to-know basis. For my “career” job after graduation, I told them everything up front. It’s a far more involved job where they need to understand my limitations more, and they have a relatively strong Disabilities program in place. But that doesn’t make it any easier explaining it to direct coworkers. Tackling this problem as someone entering the workforce (not someone who’s been out there for 20 years already) is something I have not been able to find much support about yet.
14. People would be surprised to know: that sometimes I have good days. I have days where I’m not in much pain, where I have energy, or at least where I can push myself through. I have days I can exercise, or when I can be spontaneous. But they are part of a cycle, and up-and-down, and the days will return when none of those things are true. People assume that if I can “push through” sometimes, then there’s no excuse anytime.
15. The hardest thing to accept about my new reality has been: I did not want the illnesses to control my life, I wanted to control my life. I was only 15 when I was diagnosed and was looking at giving up many of my favorite activities. I still try to stay in charge but have to bow to reorganizing my life so I can accomplish some things when I’m younger, before the illnesses progress too far to do them.
16. Something I never thought I could do with my illness that I did was: still working on that. I’m so determined that I don’t discount many opportunities. One thing I think I can’t do is travel to some places because of health risks, so I’m going to have to test that out in the coming years.
17. The commercials about my illness: None. Not one about my major conditions. At all. Rheumatoid arthritis is in the same family of conditions I have but that’s as close as we get to them. There are commercials about osteoarthritis but they don’t apply to me…none of them apply to anyone close to my age, and my osteoarthritis is in my spine, not a joint I can do anything to help.
18. Something I really miss doing since I was diagnosed is: playing in the snow. It causes a LOT of problems.
19. It was really hard to have to give up: singing. Sjogren’s, which attacks moisture-producing tissue, has destroyed so many of my salivary glands that (aside from the EXTENSIVE and ongoing dental problems) my throat has dried out too much to sing.
20. A new hobby I have taken up since my diagnosis is: Again, because of my age at diagnosis, that’s hard to answer. It’s only normal my interests have changed a lot since then and I can’t pinpoint any as being related directly to my illnesses.
21. If I could have one day of feeling normal again I would: well actually I sort of do have these days. But they’re tricky, because when they end and I return to the “ill” world, it’s very hard on me emotionally. It’s so easy to forget.
22. My illness has taught me: that I have to be my own advocate. Its one time its ok (even necessary) to look out for number 1. I have to know my limits, and trust myself. (I’m not diminishing God here, I’m just talking about what I’ve learned that is new.)
23. Want to know a secret? One thing people say that gets under my skin is: take your pick – “stop whining”, “we all have days like that”, “I don’t see why you can’t go to the mall if it’s raining” (inflammation makes it hard to walk), making fun of me for being cold when other people aren’t (HATE that one), etc.
24. But I love it when people: ASK me why, instead of ASSUMING why. Why I do something a certain why, why I’m cold, why I have sunglasses on, and then actually BELIEVE me when I tell them the reason.
25. My favorite motto, scripture, quote that gets me through tough times is: “If God brought you to it, God’ll bring you through it” and the hymn “Be Not Afraid”.
26. When someone is diagnosed I’d like to tell them: don’t lose confidence in yourself, and never back down to a doctor. Stay on top of them or switch to a new one if you’re not getting what you need.
27. Something that has surprised me about living with an illness is: Some of the doors it’s opened. Being diagnosed young, it affected my whole future, and now invisible illness awareness is a huge part of my life. (See my group, UII, at
28. The nicest thing someone did for me when I wasn’t feeling well was: ask if I wanted them to come over since I couldn’t go out.
29. I’m involved with Invisible Illness Week because: how could I not be?! This is a week all about what I’m trying to do all the time – get others to understand invisible does not mean imaginary, and for sufferers to find each other (afterall, it’s not like we can look at each other and see we’re alike, now is it) for support.
30. The fact that you read this list makes me feel: incredible. It means you know I’m not ‘whining’, and that you care about us.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at

Why a UII Blog

Ok, to begin, I make no promises here. I never had a diary, and I only journaled for school assignments. However, in the spirit of National Invisible Illness Awareness Week, I thought that as the founder of UII - Understanding Invisible Illnesses, I should give it a try at least for the the month of September. Over the next few weeks, I hope to explain where I come from with my situation, why awareness efforts mean so much to me, and especially what my successes are and how I achieve them.

I think I might have something worthwhile to share. Compared to many sufferers I hear from, my medical situation is well controlled and stable, allowing me to make decisions for myself. After reading many comments, articles, and stories, I realized my situation is an ideal for many sufferers. So, in addition to being grateful, I want to share whatever I can with it suggestions, support, or hope!

If you are Facebook, please look for our group "UII - Understanding Invisible Illnesses" . There are some great discussions, and it is open to everyone: sufferers with ANY invisible illness along with their friends, family, and caregivers.

Thanks for reading, and I hope that I am able to pass along some help, goodwill, and education to others!