There's How Many Ways to Do This?

Image of ICSI found here.

Let's take a poll, shall we?

Raise your hand if you know someone who has struggled with infertility.

(If you actually have your hand up, good - it helps when you play along:))

Keep your hand up if you know someone who went through infertility treatments of any kind.

How about anyone who's been through IVF?

(I'm guessing a few hands have gone down but several are still up...let's keep going.)

Keep your hand in the air if that person you know who did IVF had a baby from the treatment.

(You're such good sports!  You can put your hands down.)

If I were the betting type, I'd have money on the chance that almost every hand that was up for "I know someone who did IVF" was still up for "they had a baby".  Is that because IVF always works?  HELL no. In fact, most women who go through IVF have only a 20-35% chance of success in a given cycle - anything over 40% is considered terrific. No, it's because in our society, we don't talk about IVF that doesn't work, let alone the things involved in the IVF process.  Unless the person doing IVF was you, a sibling, or your absolutely closest friend, I'd be surprised if you even know they were doing it until the baby was at least visibly on his or her way.  I'd bet you have no idea how many rounds that couple may have failed before having a successful transfer and pregnancy.  It's likely not your fault, they just didn't feel comfortable telling everyone.  But we all know I am not encumbered by such social norms :D

I am just beginning my journey through IVFland.  This week marks two years my husband and I have been TTC (trying to conceive), and we've been through quite a bit of testing, medications, surgery, and several different types of treatments.  We've done the classic Clomid, tried IUI.  We did, one time, get pregnant but as you know the baby had a trisomy (third copy of a chromosome) and resulted in a miscarriage right before Christmas.  We finally took a step back after that to consider if we wanted to continue treatments, and explored the adoption scenario.  After checking out three agencies, we determined that adoption may be in our future but right now we are better prepared to try some more treatments.

However, we also decided we were not satisfied with the fertility specialist we had been seeing and realized it was time for a second opinion and a new approach.  Fortunately, through the infertility support group I joined, we were aware of a few local alternatives and one in particular which seemed to have a very passionate following, and who offered a free 2nd opinion consultation option!  We took our records from the three previous doctors, went through our entire medical histories, discussed our concerns, and sat down with the new doctor.  I'll dedicate another post to why I'm liking this new place so much, but suffice it to say she has the approach we need not only to treatment but also to patient care.  Her advice is try a "mini-stimulation" cycle of IVF which uses a significantly lower quantity of medications than traditional IVF, as my tests indicate I'm likely to be a good responder.  This is important to us with all my medical issues, as we are concerned about what the process could do to my body and overall health.

And so here we are, going through the steps to get ready for our first IVF cycle.  Oh, and by the way, the terms "IVF cycle" itself is confusing, so let's break it down:

1. The first phase of IVF is egg retrieval.  This is where they stimulate the woman's ovaries to produce a higher number of eggs than are usually developed during a natural ovulation cycle.  When ultrasounds and blood tests show the follicles are mature, a needle is inserted through the wall of the vagina (while under anesthesia) to draw out the liquid in each follicle which should contain the eggs.  
2. The eggs are then fertilized (this can be with the male partner's sperm or donor sperm, and the sample may be provided the same day or in advance and frozen).  This can be done old school with many sperm in a petri dish or via ICSI (Intra-Cytoplasmic Sperm Injection) where one sperm is selected and injected into the egg.  My clinic performs ICSI.
3. The fertilized eggs are then incubated for a period of 3 - 7 days (this depends on your doctor, personal preferences, specific medical scenarios, etc).  With my clinic they usually grow for 5 days.  It is important to note that it's unlikely all embryos will make it the full length of time.
4. At this point one of two things will happen.  You can have a fresh transfer which involves placing an embryo in your uterus with a catheter on that 5 day mark (my clinic will only transfer one at a time, and I'm ok with that - with all my medical issues we don't need the added risks of carrying twins).  This will depend on how retrieval went along with your health at the time.  There are several things that could preclude a fresh transfer, including your own preferences.
5. If you don't have a fresh transfer, all embryos will be frozen.  If you do a fresh transfer, any remaining embryos will be frozen.  Oh, and you have another decision to make - PGS.
6. PGS is Preimplantation Genetic Screening, which is a NON-DESTRUCTIVE test that can be performed on embryos (and which even the best insurances don't cover).  Prior to freezing, a small biopsy is taken from the outer ring of cells which will eventually form the placenta (thereby leaving the cells that become the baby itself untouched).  The sample is then examined to determine if the embryo is chromosomally normal.  The test will determine if the embryo has the right number of chromosomes, which chromosomes may be missing, and which may have an extra copy.  It will also identify the sex of the embryo but you can ask your doctor not to tell you that.  So yes, this test will tell you if your baby has Down Syndrome or another chromosomal condition - whether compatible with life or not.  It will NOT tell you traits such as eye color, genetic risk factors, and so on.  How you use this information is a personal choice.
7. Once you have a fresh or frozen embryo transfer, you enter the infamous "Two Week Wait" where time seems to stand still and your stress level reaches new heights.  There's a lot of discussion around how to survive the time you wait to find out if the embryo implanted, and most tips center around how to keep your mind busy.  A lot of women stock pile books or binge-watch TV series.  Part of the challenge is that most forms of exercise (a stress-relief tool used by so many people) will be off limits during this time adding both to your physical discomfort and your anxiety.  During this time, it's common to continue a hormone protocol, depending on your specific case.

These are just the basic steps.  When someone says they are having an IVF cycle, it could mean that they're having a transfer, or a whole new egg retrieval being done.  And this process involves so many decisions and choices I never, ever contemplated before being in this boat.  What do I need / want to do to prepare my eggs for retrieval?  This could mean medication, supplements, acupuncture (which is incidentally something my peers SWEAR by), clean eating or other special diets, specific exercises, massage, even special heat compresses.  The medications you might take during stimulation, while preparing for a transfer, or following a transfer will mostly be directed by your doctor but you do have some input, again including diets, supplements (ALWAYS clear them with your doctor - "natural" doesn't mean it won't interact with meds), exercise (if permitted), and so on.  It's overwhelming.

So this is where I am.  I am preparing for my first egg retrieval which for me means going through several more tests since I am new to this clinic, and panicking because I'm well within the 90 day window prior to retrieval when studies indicate you can most impact the quality of your developing follicles and I have NO IDEA what if anything I should be doing differently.  Next week I will meet with my doctor again to review everything and hopefully get the green light for the retrieval, after which my husband and I will have to go for informational sessions and to be trained on administering the injections at home to encourage egg development.  I'm attending support groups twice a month (one led by a therapist and one peer-led group organized under the awesome national organization RESOLVE), and we are also in touch between meetings as we're all in a high-activity state right now.

So, if your'e still with me after all this discussion, I'll ask you one last question - how many of you had any idea what's involved in IVF?

Because I sure as hell didn't.

2015 Sjogren's Walkabout

Team UII at the Philly SSF Walkabout

At last it's here, it's finally SPRING!

What fun and joy will this season bring?

There's flowers and sunshine, and lots to do.

But the most fun of all will be at the Zoo!

So check us out and join our team;

The funds you help raise will support our dream -

To live a life where we more than cope,

Where we laugh and love and are filled with hope!

What: 11th Annual Walkabout for the Sjogren's Syndrome Foundation

(This is my fifth year on the committee for this event!)

When: Saturday, May 2 - Registration opens at 8:30; step off is at 10:00AM

Where: Philadelphia Zoo (for those in the Philly area - if you aren't nearby, please consider donating, and check the Sjogren's website to see if there's an event in your area!)

How: Donations can be made online or by contacting me.  Qualify for FREE ENTRY to the Zoo for the entire day by simply raising at least $10 per family member (ages 3 and up)!  

For details on earning FREE entry and how to make donations, visit my team page at here: 

Team UII - Understanding Invisible Illnesses! 

Please remember to invite your friends and family!  You can share this post via email, Facebook, Twitter, Linked-In, Google+, etc.  Or, sign up for the walk and send your personal page around!

What is Sjogren's?

Sjogren's Syndrome (pronounced "SHOW-grins") is the second most common autoimmune disease in the US, though it is dramatically misunderstood.  In this disease, our bodies attack themselves, especially moisture producing glands and connective tissue.  While the most common symptoms include dry eyes, dry mouth, fatigue, and chronic pain, Sjogren's can affect every system in the body.  It is chronic and progressive, meaning there is no cure and it will usually get worse over time.

But the SSF (Sjogren's Syndrome Foundation) is working to change all that.  The Foundation has recently cut the average diagnosis time from 7 years in half, and is continuing to work on making that even shorter.  They also:

• Provide resources to patients, family, and healthcare providers,
• Host an annual Patient Conference,
• Publish materials,
• Raise awareness among the healthcare community to drive interest in this pervasive disease, and 
• Fund research into effective treatments and possible cures!

The Philadelphia Walkabout is the Foundations largest fundraising event in the country!

Sjogren's By the Numbers:

• An estimated 4 MILLION Americans have Sjogren's
• 9 out of 10 patients are women (though both men and women can develop the disease)
• Sjogren's patients are at a 44X greater risk of developing Lymphoma
• Sjogren's patients need an average of 50 TIMES more dental work
• The average age at diagnosis is between 40 and 50 years of age (but it can occur at any age - I was diagnosed at 15 with symptoms beginning at 2 years of age)

Learn more about Sjogren's and the SSF at www.sjogrens.org. 

New Therapy Checklist - 10 Answers You Need

On any given day, we patients progress through a common linear set of events, such as the following:

• We go to the doctor with a problem - a new symptom, increased frequency or severity of an existing symptom, or even to manage an asymptomatic issue of which we were already aware.
• Especially in the case of a chronic illness, we celebrate a possible treatment which may alleviate this problem.
• Eager to improve our lives, we start down the treatment path prescribed (be it pharmaceutical, physical, or another type of therapy)...and quickly encounter a side effect.  Or perhaps we don't seem to experience relief, or maybe we do but this relief is incomplete or short-lived.

We're now faced with questions: Do I stop my treatment?  Is this normal and safe?  Is it normal but not safe?  Are there things I can do to make it more tolerable?  Does this mean it isn't working for me?

We have these questions because we didn't know what we were getting into.  Either we misunderstood what our doctors told us, or perhaps they never even told us many of these details to begin with.  The doctor's role isn't restricted to managing our illnesses, it also includes managing our expectations, and that clearly doesn't always happen.

Today while covering day one of the Patient Summit USA conference as part of the WEGO Health Press Corp, I listened to several presenters discuss critical aspects of the patient-provider relationship that impact how likely patients are to adhere to a course of treatment (especially medications).  In fact, "adherence" was the buzzword of the event.  From these conversations and drawing on my own observations as well feedback I've received from other patients, I was able to identify several key questions I believe a patient should ask about any treatment prescribed for them.  As was pointed out to me by Dr. Steven Feldman who gave the opening speech this morning (yes, a DOCTOR said this, not a patient advocate), the fault doesn't lie solely with the patient - the provider has an obligation to communicate with the patient and to do so effectively.  After all, if you say something but no one hears it, did you say anything at all?

So, in light of this argument that doctors should take a more proactive role in getting information out to patients even if they don't ask, I believe that, as always, it is ultimately on us to ensure we get the level of care we require.  This care and information need to be at a level we can understand if they are to be used to their utmost whether we get that by reading information sheets or asked questions of the provider during the visit.  And therefore I present to you not 10 Questions to Ask, but 10 Answers to Have about any course of treatment before leaving the office.

I feel like purchasing this post, found here, for a few physicians - and patients - that I know!

1. What diagnosis does this treat?
2. What symptom(s) does this treat?
3. How does it work - what is the mechanism or process (i.e., stopping this from happening, increasing that, and so on)?
4. How much improvement can I expect (full relief, partial recovery, etc.)?
5. How long does it take to begin seeing a change in my symptom or condition?
6. How long before the full extent of relieve I can expect should be realized?
7. What are normal side effects which don't indicate a safety risk, and how can I cope with them?
8. What are abnormal or particularly worrisome side effects which signal I should stop the treatment?
9. Are there any other risks I need to consider, such as long term effects or interactions with other medications or supplements?
10. Why do you think this is the best treatment for me at this time? OR I have some concerns I'd like to discuss first.  (Depending on how you feel about the treatment.)

I can't stress enough the importance that you don't just ask these questions, but that you really get answers.  Answers which MAKE SENSE TO YOU, at least to a reasonable extent.  YOU have to follow this course of treatment; YOU have to make decisions while on the treatment about hurdles that may arise; YOU have to live in the body that was affected by these decisions.  Here's an example of what I would consider reasonable answers for taking Plaquenil, a common maintenance drug prescribed for Sjogren's and related conditions.

1. Plaquenil is being prescribed to treat Sjogren's Syndrome.
2. This medication should help minimize overall inflammation and general disease activity such as brain fog and fatigue.
3. Plaquenil helps reduce these symptoms by suppressing the autoimmune system so it won't attack healthy tissue as much.
4. This course of treatment is meant to reduce existing symptoms that are due to highly active inflammation processes in the body as well as slow the progression of the disease going forward.  While possible, it is not likely that the patient will have complete relief from these symptoms.  The patient should expect to notice an overall more comfortable level of functioning with less fatigue and brain fog and fewer and/or less severe flares.
5. Patients usually begin to notice improved symptoms in 3-4 months though not complete relief.
6. It may take as long as 9 months to realize the full extent of the improvement so we usually ask patients to stay on the treatment at least this length of time if possible.
7. Some patients have mild nausea when taking the pills, so patients may want to take them with a glass of milk.  Also, it is not uncommon to have unusual dreams while taking this medication but this side effect is not harmful to the patient.
8. Patients may experience more concerning side effects.  If a patient become physically ill for 3 or more days after beginning the treatment, discontinue use and contact the prescribing physician.  If the patient has symptoms of a severe allergic reaction such as swelling of the throat, discontinue use and seek emergency medical assistance.
9. Two primary long-term risks are associated with Plaquenil.  In some cases, patients taking this medication for a long time develop retinal toxicity which affects vision - therefore, we will have to get certain eye exams every 6 or 12 months to detect any build up before it affects your vision and can be reversed.  The other effect can be liver damage, so we will run common blood tests before every appointment to monitor for signs that it might be affecting your liver function.  We don't see these very often and both are reversible when caught early so we will stay on top of these tests.
10. I believe this is a good treatment for you because you do not have many risk factors, the treatment has a strong history of success in long term disease management, is inexpensive under your insurance, and simple for you to use.  Other treatment options have lower success rates and more side effects, so I'd like to see if this works before trying those.

These really are basic pieces of information every patient should have about their own care.  We are not employees to be directed, we are customers hiring a doctor to provide a service - care and guidance.  Never lose sight of your own right - and obligation - to make the final decisions about your own health!

You Can't Finance Energy

Illustration by Tim Bower, originally published with this article in Vanity Fair.

Well if that doesn't look like the way I feel on the inside most days....

Tell me if this scenario sounds familiar to you:
It's morning (or lunchtime or afternoon or the middle of the night during an insomnia spree or basically any time of day), and you want nothing more than to lie in bed a while longer.  Not because you're comfortable - in fact, you may be in pain.  But because getting up requires moving your body and that requires energy and you don't have any.

But you do it; you get up.  You have to.  You have a child to get off to school, a friend to meet, a boss waiting for a presentation, and you have to get up.  Furthermore, after you slog your way through a morning routine and are able to leave the house, you have to smile, pay attention, join in conversation, solve problems, and navigate other interactions in this world of ours which all require - you got it - energy.  How are you supposed to do something with nothing?

What's that?  A resounding chorus of "YES, THAT'S MY LIFE"?  Thought so.

Which of course means the next part will sound familiar too.  The way so many of us get through this is by doing what I call "financing energy", but I don't think this is a very good idea.

When we say we're going to "finance" something like a car, house, or even an education, we mean we're going to borrow money for the purpose of making a major purchase and pay it back over time.  We agree to give up a smaller amount of our money each month for a period of time so we can have something bigger & better right now.  Usually, at least if we do it right, we first consider how much we can handle giving up each month to make sure we don't "over extend" ourselves and if we were right, this works just fine.

The problem is that energy doesn't work that way.  You could say that we give up some money to get energy when we buy and consume coffee, energy drinks, even high-sugar items, or any  other device or trick we can buy that results in what appears to be energy.  But in the end, the only way to pay back energy is with energy.  You can't trade money for it.  If you use this energy now, you won't have it later - and furthermore, you can't spread out that "cost", you have to pay it all back right away which means you won't have any energy left for other things for a while.

Oh and the way we pay interest on purchases we finance?  Where we pay a little extra in total for the luxury of spreading out the expense?  Our bodies didn't forget that either.  If you expend more energy that you really should have used, you won't just be out of energy tomorrow, you'll feel worse than you started today.

Financing energy is a dangerous, if common, practice.  It almost always ends in the bodily equivalent of foreclosure...or one might say, forceclosure.  (I know, I'm slipping into Jen Pun Land, but this one's actually pretty logical.)  An attempt to obtain more energy now than you should have will probably result in a total loss of all energy for a period of time and cause you some level of suffering.  So, we have to find alternatives.

Obviously, the best solution would be to space out tasks to respect your energy limits (much like credit card limits in this case), but this is obviously difficult at best.  If this can't be done, we can try some less ideal options that might still save us the pain and regret later.  A difficult but effective solution is to learn to say "no".  No, I can't run that errand today.  No, I won't be attending that event this time.  No, you will need to wait for us to go over that.  It's a fine line, because sometimes saying no leaves us feeling controlled by our diagnosis but it's really the other way around, we're in control because saying no now means we'll be able to say yes to things later!  We have to remind ourselves, and each other, and those around us, that it's ok to sometimes say "I will be happy to do that tomorrow" or "please let me know next time that comes up".  We fear missed opportunities, perhaps even more than the average person.  But when we take out the energy loan we can't pay back, all we really do is guarantee ourselves a whole lot more missed experiences.

Instead, let's build a new "bank" for ourselves, where we make deposits - running an extra errand on days we have some extra time, doing favors for others when we can so we don't feel bad for asking them to return them later, or even strengthening our foundations by doing things to make ourselves healthier through diet, exercise, and proper rest.  Let's create a culture where "saving" is good; where reserves are built up before they are drawn down, and where balance is valued.  We are not the USA; we do not have a national debt and cannot print money.  Just like our society is realizing across the country (and globally), it's time to make a habit of living within our means.

Ironically, as I was about to hit publish on this entry I saw the following post on Facebook.  Seems I'm not the only one with this train of thought today!

My Spoonie Mentor

At my firm, there is a big emphasis on mentoring relationships.  We are assigned mentors, encouraged to pick our own, and look to how we can be mentors to the next generation.  Our interim & annual reviews are held with mentors, and budgets are dedicated to maintaining these connections.  Why have such a sophisticated structure in place to enforce relationships usually developed by happenstance?  Why put so much focus on this entirely human factor in the oilled machinery that is one of the Big Four.  Well, if you ask them, it's because these relatonships are critical to the development of each individual, which in turn affects the longterm health of the firm.

Hm...the passing of knowledge gained through study and experience has a strong impact on health - or vitality, fritfullness, and quality - of our futures.  Sounds kinda like something every Spoonie ought to be doing.  I have mentors at work: one assigned, one selected in addition, and even a few 'off the books' who have taken an interest in me.  But I also have a Spoonie mentor, who I was lucky enough to find very early in my activism.

For those of you who don't know, Shawn and I are on vacation.  Our main destination is in Georgia (which I will post about as soon as I can because it is beyond my best dreams), but due to the prohibitive price of airfare, we decided to drive down & back, staying overnight someone en route each way.  Shawn drove the whole shift yesterday, and briefly when we departed this morning.  Shortly into the drive I took over, and drove for several hours.  However, after roughly 5 hours (give or take) I had to pull over and ask him to switch.  I found myself squinting and blinking extra even with sunglasses (and given my sensitivity, I have at least 4 different types of them in the car and went through most on this drive) and still struggling to see comfortably.  My control over the vehicle within the lane seemed to be loosening, and I was starting to struggle to make sense of signs around me.  It was pretty clear I was fogging over.

As we pulled back on the road, Shawn behind the wheel with a reassuring word that he had no problem doing it, I was starting my usual habit of beating myself up in my head.  I hadn't even pulled as long a shift as I wanted to, let alone after he drove the whole time the day before.  Then I asked myself the question every Spoonie knows and hates: "Did I really need to stop or was I taking an easy way out?".

You know what I'm talking about.  Self-doubt is like a pimple on the tip of your nose - always shows up at the worst time, isn't usually actually your fault, makes you want to hide your face, and only gets worse when you pay attention to it.

But then I thought about fellow Sjoggie & clutz supreme (and she knows I mean that as a compliment), Julia.  Specifically, I remembered a post she wrote about a similar experience.  Not long ago during a visit back home, Julia found herself driving her mother when the Sjoggie brainfog rolled in.  Of course, by definition this thought-muddling experience interfered with her ability to identify & react to the problem...in other words, she kept driving despite her impaired mental capacity.  You can read her post for the rest of the details but suffice it to say everyone's ok but more by accident or divine grace than her road skills.

I don't think I needed Julia to tell me WHY pushing it to keep driving (especially at high speeds with cars up my rear bumper and intermittent surprise severe rain) would be a bad idea, but I did need her story to make it sink in.  I would be taking my own life in my hands, as well as countless other people on the road, and most importantly Shawn's.  Suddenly, I felt relief.  We had defeated the ugly self-doubt monster and let me know it was not only ok but back-slap worthy of me to invoke the switch.

It's not the first time Julia's been my mentor - sometimes knowingly (answering my myriad of questions ranging from vitamins to managing blog stresses to family and everything in between) and sometimes unwittingly, through her stupendous blog.  I know for a fact she's also mentor to many, many others, even if she doesn't know exactly who and when she's helped.

In all seriousness, I am grateful for Julia.  I'm glad I found her blog, even more glad I reached out to her, and ecstatic that she wrote back.  Maintaining this relationship is almost effortless for me and reaps so many rewards.  If nothing else, there is so much comfort in that resilient voice reminding me it will be ok - not necessarily as I thought it would be, but still ok and I'll be happy.  I encourage every one of you to keep an eye open for the mentor - or mentors - in your life.  Whether there's someone you already know or will meet in the future, there's bound to be a person with whom you can connect and get the support you need.  It's a rewarding experience that I wouldn't trade for anything, and so I wish you all the same gift!

Learning from those who walk before me, like the beauties in this image, found here.

Kindling

Fire is a life source.  We all know the cliches, about how fire transforms, it creates and it destroys, it changed human existence and in fact the world forever.  It is huge and yet it is nothing; it has no substance.  It is terrifying, but it is also beautiful.

But fire also dies.  Fire pits, bonfires, even expansive forest fires will eventually burn out.  Nothing lasts forever, not even fire.  And yet, we can always start fire anew.  Sometimes it even restarts itself.

©2010-2012 ~persistentgloom

When a fire "dies", it still retains a tiny bit of life.  Embers can survive even buried beneath debris for days.  All it takes for an ember to bring about the life of a fire anew are the right circumstances and some scraps - wood or material otherwise considered worthless - which are known as kindling.

Image found here.

We humans are fire.  We destroy, we build, we leave nothing untouched.  We eventually run out of fuel and sometimes it appears we've lost the passion that drives life...but we don't truly 'die'.  We are more than raging, uncontrollable flames - we are also embers, waiting for the right kindling.

It's been a long time since I've posted.  The demands of my job, trainings, and some scattered projects have taken their toll, on top of which the springtime (formerly a favorite part of the year) has become the worst for my overall health.  The wildly fluctuating temperatures coupled with seemingly endless rain & humidity play games with my physical being.  Coping with all these forces as well as plain old exhaustion and has left me drained.  

In a webinar I did with WEGO Health on "IRL Activism" (In Real Life), I was asked to summarize a few of the lessons I've learned into tips I could share.  One of the biggest hurdles I face in common with my peers everywhere is burnout, and I was asked how I cope with that.  The best I could offer is to let yourself be burned out.  Give in to the void.  Just as you would switch gears to cope with physical pitfalls, you must also allow yourself to heal from emotional, psychological, or even spiritual ones before pushing back into the grind.  I think, perhaps, it's not a coincidence this is called "burnout" (though, I swear it was a coincidence that I ended up saying it in this post - it's one of those posts unplanned, which gushes out of me unaffected by my urge to organize).  This 'burnout', like a dying fire, is full of embers and if you can be patient and observant, you will find your kindling.  Your fire, passion, will burst into new life, almost of its own accord.

(Although, I certainly didn't say it with this finesse...maybe I should ask for a transcript revision;).)

I think I'm finding my kindling.  I am not dead; my passion, my activism, my dreams, and my life are not dead.  I've just been stuck for a while on "smolder".  But tonight I felt a scrap of kindling fall in my lap and catch, warming itself as well as the world around it, and now eager with the potential to show its full force.  I just might burst into flames.  Tomorrow I will finally get to wear my Walking Gallery jacket for the first time. In 12 more days, I'll not only get to wear it again, but do so besides dozens of other exhibits in this gallery and the mastermind herself Regina Holliday, when we form a true Walking Gallery in DC.  The thought went through my head "I don't know which I'm excited about more"...and my embers glowed.  I'm ready at long last to explain the Gallery and my story depicted in my jacket, "The Picture of Health".  And I'm ready to burn up the web by resuming my blogging.  It's been a painful month since my last post (again, I swear that was coincidental too) and writing again really feels like I've come back home.

I'm glad to be back, readers, and hope you're ready because I can feel the impending blaze.  It's going to be a beautiful thing.

Image found here.

I Didn't Like the Alternative

I've been combing the internet for a quote that captures a particular concept I have in my head.  In the process, I found several excellent expressions, such as this twist on a classic - "Courage is not the absence of fear, it's knowing that fear gets you nowhere" - and this definition - "Heroes are the people who do what has to be done regardless of the consequences".


William Faulkner pointed out that "man performs and engenders so much more than he can or should have to bear.  That is how he finds that he can bear anything", which is getting a little closer to my point.

Dancing around ideas related to the thought I'm trying to express, Josephine Hart warned us that "damaged people are dangerous.  They know they can survive," and John Updike wisely commented "we do survive every moment, after all, except the last one".

These are great motivational statements that serve to encourage us in the face of adversity and, sometimes, to remember humility is the great equalizer.  And yet, none of them quite hit my nail on the head.  None really say what I want to say; my persistent work with the 'Google machine' returned no perfect results.  So I guess I'm going to have to say it for myself.

I've noticed several other bloggers and activists discussing a topic familiar to us all, this is, how to answer a certain question we are asked by the "healthy" people around us.  This question comes wearing many disguises but ultimately - like the pierogie, ravioli, and potsticker - they are of like-substance:
How do you do it?
How do you have all that energy?
It's so great you can do everything you do (this thinly veiled statement-question can be particularly caustic to our nerves, by the way).
I don't know how you got through [insert medical disaster here].
I'm amazed at how you do all the things you do even with all your medical problems!
I wouldn't be able to do what you do.


I know these are (mostly) well-meaning, even complimentary statements.  Expressions of support and admiration from those honestly trying to be supportive.  But they drive me crazy.

I didn't do "it" (whatever it is) for you to admire.  I wasn't trying to impress.  I wasn't even trying to win some competition, or prove something to myself or anyone else.  To be honest, I would just as well have never done "it", but that would depend on never having needed to do "it".  The only alternative I could see, the other option besides doing "it", was to stop living.

I did it because I simply didn't like the alternative.

I don't know how I would survive many things others got through - living in concentration camps in WWII, or surviving weeks without food besides the occasional bug as they often must do in war-torn countries around the world.  But I do know how they did it.  They didn't like the alternative either.  Really, there was no alternative but to drop dead on the spot.  Maybe they'd end up dead from the experience anyway, but they had to try, and many people did survive.  There's even positive things I don't know how I could (or will) survive but I'm going to do them anyway, like having a baby (the actual birth part of it...blows my mind).  But I don't like the alternative - not having babies - so I'm just going to do it.  As have billions of women since time immemorial.

This is Noah, who had a heart transplant at 10yrs old.  I don't know how I'd survive needing a heart, getting it, or being the parent of a child need one...or donating it.  But I would, because the alternative isn't an option.  Image found here.

Maybe I am strong, as so many people like to tell me.  But if I am strong, it's not because of what I did, it's because of what I didn't do.  I didn't pretend there was another more attractive alternative which didn't really exist.  I know people who do this, and all it accomplishes is shuffling the responsibility while still leaving them worse off than they began.

Cartoon found here.

So if you're like me and so many of my friends, the next time someone asks you
"How did you do 'it'?"
you can tell them
"I didn't like the alternative."

UII Blog Carnival #1 - Successes!

Wow, I am overwhelmed!  I was nervous about putting out the request for submissions to our first blog carnival, because I thought no one would respond.  It's not always easy to break into new projects.  But your support was overwhelming!  Many of my blogger friends posted links encouraging others to sign up, sent in their own submissions, and WEGO Health jumped in before I could even ask, sending bloggers my way.

And what an inspiring bunch of writers you are!  The topic for this first UII Blog Carnival was 'success stories'.  I asked writers to send me their tales of treatments/procedures/tips that made their lives, or the lives of their loved ones, better.  This was my sneaky way of giving you a two-for-one: (1) really good reasons to be positive and hopeful, and (2) some concrete ideas of things that have worked for others.  Enjoy - I did!

Image of Awesome Kid found here.

Elisa, who tweets as @SjogrensStyle and maintains a blog by the same name, reminds us even things that aren't perfect can still be pretty great.  Her post "Friday Favorite: Plaquenil" covers the joy of an improved general well-being, weighing benefits & risks, and best of all - answers a question I've been wondering about for years (thanks for the history lesson)!

Licensed marriage & family therapist Laura shakes things up a bit...literally.  Instead of a traditional blog, she sent me a link to one of her articles published on the website HalfMoonBayPatch, titled "Dancing Despite Disabilities".  I'll be honest, I think Laura wanted to remind us our lives & passions don't stop when we're diagnosed, and I LOVE that message...but I also saw a hidden gem in this article.  Read closely and see if you notice the way one person helped themselves GET a diagnosis - which in turn led to their ability to regain their life!  Follow Laura on Twitter at @lcstrom.

@IBSTales tweeter Sophie Lee discusses a set of challenges familiar to many readers.  After beginning several treatments at once, she now wonders which are actually helping and which may be extraneous.  However, stopping them poses the risk of returning symptoms.  Read about the successful treatments Sophie uses & how she works through the question of which are really necessary in her timeless post, "Gaining Control".

Our next contributor copes with many "invisible" realities which complicate her life, especially how she interacts socially.  Blogging under the pseudonym Displaced and tweeting at @GonnaEatWorms, this blogger touches on many of the emotions that come with prioritizing your own needs.  I relate to many topics in her post "Claude Raines has nothing on me!", such as the silver lining to having a condition which is 'invisible' and the inherent responsibility many of us have to force society to deal with things that make it uncomfortable.

My brother Jon, who tweets at @thedorfist, has been a guest blogger for me in the past.  He's started a new blog, chronicling his revelations in the post-collegiate world of the Asperger's degree holder in The Aspie Epilogue.  In his recent post, "...But Does It Blend?", Jon discusses key considerations in moving past emotional explosions (or helping an Aspie to do so) and how to grow from these experiences.

Sjogren's and other invisible illnesses are not limited to the English-speaking, of course.  One of my long-time favorites, Jazzcat, is a bilingual blogger!  Jazzcat's entries are written first in her native French, then translated (by her, not a machine!) into English in the second half of every post.  After beginning to practice yoga a year ago, she swears by it for therapeutic & mobility purposes today.  Read about her first attempts in her post "Yoga Cat" and her recent update, "Flying Away".  Merci, Jazzcat!  C'est tres bien!

Kristen, better known as Blogger Mama, shares her discovery of a new type of eye exam which is performed more quickly and is gentler on the patient than traditional exam methods (especially for those who need special exams for medical reasons, such as taking Plaquenil)!  I'll be speaking to my doctor soon about the method Kristen described in her post "Eye Doctor"!

Then there's Julia - ah yes, @JuliaReasonWell on Twitter - who never disappoints!  Enlisting her trusty Cannon camera and accomplice Goldie the Prius, Julia reminds us that we have to make choices but it's ok to sometimes choose what makes us happy.  In her post "Where Julia Went in the Sunshine", she chooses enjoying some of her favorite spots in nature (with the proper precautions for a Sjoggie, of course).  Check it out to see how she balances wants & needs, along with some rockin' photography!

My new friend Tosha doesn't tweet, but does host a Facebook group with the same name as her blog, Bottled Time.  Her post, "I Do Tricks for Treats!: My First Experience with Cimzia for Inflammatory Disease", is quite funny!  While discussing the very serious & important topic of injectable biologic medications, the post is sprinkled with chuckle-worthy pictures & chortle-inducing perspectives.  Don't skip the links at the end of the post - even the descriptions were an endorphin boost!

A woman who claims to actually be capable of "Falling With Grace" - a feat I will never master, as I am a pro at falling but not so great with doing it gracefully - practices a habit we can all do.  As blogger Amy explains in her post, "Word", this tip doesn't require money, equipment, special food, or even much time...just willingness to give it a genuine try.  Now that's a hard one to ignore!

Embracing a similar approach, chronic patient Chelsey started her blog, HOPE - Helping Other Patients Everywhere.  I relate to many ideas in her post "Encouragement and Perseverance", which describes (and demonstrates!) her in-charge mentality for dealing with very intrusive chronic illnesses.  I think my favorite part is the 'conversation' between Chelsey & her illness.  We should all be so determined!!

Bennet Dunlap (@DiabetesMayVary) is pretty unique among our carnival bloggers.  He is the caregiver for his children with Diabetes, one of two male contributors, and one of four contributors I've actually met in person - and, will be presenting with UII at a conference in May on the Digital Patient Bill of Rights, which was developed at the Digital Health Coalition event we did together in September.  In his classic post "What Is Your Goal?", Bennet delves into the questions parents of kids with chronic health issues must ask of - and answer for - themselves.  Bennet reminds us to keep our eyes on the real prize.

How about one more for the road?  Our favorite 'gimpy girl', Bridget, shares her way of staying 'Bridget' despite the best efforts of her aggressive chronic illness.  See how, by "Sewing Through the Pain", Bridget found a way to really leave her illness out the equation (safely).  She's not battling it, ignoring it, or even attacking.  She's simply being herself in spite of it.  And I love her for that:)

"...or Brother"!  Image found on SodaHead, here.

And there you have it!  Lucky 13 contributors with actually 14 posts among them, for your hopeful & healthful pleasure!  These bloggers collectively share an incredible array of tactics for making life as a chronic patient better - physically, emotionally, and even spiritually, and I know you'll enjoy what you find.

Gee, I can't wait for the next topic!!

Great or Small

There is a familiar saying which once seemed trite but now means the world to us.  A saying that was easy to discount in our younger, pre-sickie days but which becomes more and more valid as disease progression marches on over time.
A saying we owe it to ourselves to continue saying.

"Every little bit counts."

Every time we take our meds; every day we apply suscreen; every cup of water we drink; every nutritional directive we stick to makes a difference.  Every precaution and every treatment counts.  Everything we do to help ourselves life a longer, fully, happier life counts.

And, much as we may not always like to be reminded (and I'm the worst offender here), the same goes for physical activity.  Every little bit of movement counts.  Looser joints, leaner mass, stronger muscles, and healthier hearts & lungs are ours for the taking, at some level.

If anyone understands the limitations here, it's this group.  We know what it's like to be too exhausted to stand let alone move around.  Personally, I have so many problems with my shoulders and hands that upper body strength training feels quite daunting.  Somewhere in our heart of hearts, we know there are days where the best thing we can do for our bodies is to do nothing at all.  But these same hearts also house the knowledge that this makes it that much more important for us to do what we can on other days.

Blogger, tweeter, presenter, artist, and smokin' health activist Jenna Visscher (The Feeding Edge) would like us to live out this adage, to spread awareness of the benefits of even the most moderate exercise as well as of the chronic invisible illnesses Ankylosing Spondylitis.

To this end, Jenna has launched a prolific and amazingly easy campaign: Walk Your A.S. Off!

What does it cost?  NOTHING!
Are there any risks?  NO!!
When will I have to change my schedule to participate?  NEVER!!!
Where do I have to travel to participate?  NOWHERE!!!!
What do I stand to gain?  EVERYTHING!!!!!

How easy is this:

• Walk.  Anywhere.  Anytime.  For any duration or distance.  As often as you please.  On your own schedule.  All by yourself or with anyone you like.
• Count your steps (pedometers are easily available by mail order or at many stores near you, sometimes for less than $5 each).
• Record your steps each day starting on March 1 (that's tomorrow!) 

Make your own team, join an existing one, or stand (and walk) on your own two feet.  Every step counts, including all the ones you usually don't consider (walking to your car, through a store, or to get lunch, for example).  Walk less on your tough days and more on your good ones.  Every little bit counts.

Read more about how Jenna got this idea, what the goals are, and FAQ topics on Jenna's site.  Join (or start) a team on Facebook.  Consider how simple it would be to support people living with A.S. by tracking what you do on a normal day or to help yourself.  

Come on, people, this one's a no-brainer.  YOUR every little bit helps, maybe now more than ever.

Sometimes You're the Pooper Scooper, Sometimes You're Just the Poop

Forget the dog, I know a few people I'd like to train to clean up after themselves...
Image found here.

I apologize in advance but sometimes you just gotta tell it like it is, and sometimes it's shit, and a little "s" with a bunch of symbols after just won't do!

We all want to be needed.  We want to be important, valued, and respected.  We want people to seek our advice, ask our opinions, and describe us as reliable.

But being needed has its drawbacks.  Sometimes it's enough to try to keep our own lives on track without having other people bring us their problems to fix.  When we're staggering under our own loads, it can be difficult to care about someone else's seemingly trivial woes.  Other times, we may want to help but simply don't know how.  And yet, if we've established ourselves as responsible people we're going to be the ones held responsible for fixing things.

That's right, the other side to the warm fuzzy of "being needed" is catching shit.  Scooping the poop your friends, family, and colleagues drop as they pass through life.

Wanna know the truth?  I actually don't hate being the pooper scooper.  At least, most of the time.  I like being the problem solver, and especially if the other party is engaged in what the solution is so they can handle it themselves the next time, it can be quite rewarding.  True, there are times the glamour fades, but on the whole it's really not so bad.  Lately I've more often been in positions to catch shit at work, scooping the poop for my client or team, but that's as it should be.  Moving into my new(ish) role means dealing with that but also a lot of authority & opportunity, and if I scoop well I get a pat on the back at least.  So, suffice it to say I generally don't mind being the quicker picker upper in my world, though every once in a while I can get a little wearisome.

Then, there are the days the whole game flips.  For me recently, these days are the ones where my ass is dragging as I try to fight through my day until it finally dawns on me that I've changes roles from the scooper to the poop itself.

If the urge to be needed is common to the human experience, the dread of being life's poop is common to the chronic patient experience.  We try to avoid it, but know deep down there will be those days where it will happen; when we will be described by the same adjectives used for poop: icky, gross, waste[d], even smelly.

When that happens to me, I've decided that means it's my turn to be the poop and someone else can be the scooper.  The best way I can try to help other on those days is doing what I can to help myself so they don't have to cater to me as much.  Shawn knows what I mean - on a 'scooper' day, I might run some errand, decide what to do about dinner, or deal with the dog when she barks at nothing.  On 'poop' days, he'll have to do all that so if I can at least settle myself on the sofa with my usual accouterments (tissues, liquid, something to nibble on) he won't have to cater to me as much.

This gives me a new idea for a new way to track my general health over time - I think I need a calendar, on which I can put a sticker corresponding to how I feel: a strong, shiny pooper scooper or a steaming, heaping pile of dung.

Did you realize that poop is a noun referring to excrement, but also a verb synonymous to exhaust?  A coincidence...I think not!

Happy scooping, fellow Sickies!!

5 (Even Simpler) Steps to a Family History

In September 2009, in my blog's wee, formative days, I posted what I considered to be a basic 5-step plan for learning your family's medical history.  For once, I'm happy to report I think I've gotten a bit more succinct over the years, and the time has come to present to you an even simpler 5-Step Plan!  Learning, examining, and sharing your family's medical history is an extremely undervalued tool.  In the hands of the right doctor - or a diligent, educated patient - it can mean the difference between early intervention and late-game diagnosis.

Image found here.

What and Why?
What exactly is a family medical history?  And moreover, why should I care enough to invest the time into learning mine?  It's not going to change anything, afterall...


Particularly in the mysterious world of chronic illnesses, genetics seem to play a role in the likelihood of an individual turning up with one or more such 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.  Other times, the links are more direct and are passed on in the same ways as hair color, height, and body shape.  Either way, 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 (if done right) may raise some questions, but remember to look at it with rose-colored lenses: by taking the time now to find the concerns and questions, you give yourself (and others) the chance to plan for them before reaching a crisis! 

Step 1: Research your family history
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 in whom it appeared.  In particular, doctors want to know if a blood sibling, parent, or grandparent had a condition, but if you see a trend elsewhere (say, aunts and uncles), make note of that too.  Remember to examine all parts of your family, both mother and father's sides and each of their siblings and parents.  One way to make sure you don'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.  Additionally, some 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!

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)

Here, I identified each person by which side they were related on (i.e., instead of 'Uncle Joe', say 'dad's brother Joe').  Doctors usually want to know information in this format.  You may also want to list the age at diagnosis, which is useful in some conditions.  This is also 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).

Or, if you think like an accountant, this is a great opportunity to exercise those Excel spreadsheet skills...just sayin'....

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 would have indicated my increased likelihood for developing 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 with you to your doctor appointments.  It will be invaluable when filling out those tedious new-patient forms, and may be of interest even to your current caregivers.  If your family history is extensive or you have a complex health situation, consider giving a copy of your information to your doctor to keep in your record.  If you have "mystery symptoms" you haven't been able to piece together, use your family history as a starting point to discuss with your doctor to reveal a new direction you should explore.  Even if you are unencumbered by medical problems now, take the chance on a routine check-up to review your family history and make sure you are taking all precautions to keep yourself in good health. 

Update the record whenever you find out new information.  For example, if your mother develops osteoporosis, you'll want to add that to the lists.  Again, Excel is a great option for this - and it makes sharing the information easy, as you can email the file to family.

A nice idea is to share the information with your family.  If you uncovered any noteworthy health trends or important items, you should share that part of the information with other blood relatives.  In doing so, be sure to include your own health history.  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 history...it 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.

Your family medical history may have implications as you plan a family (if applicable).  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 I could have a child with fetal heart block), 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 this risk!).  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 all that work, you'll basically have a list of "WCGW" (what could go wrongs) - don't dispair!  The point of this whole 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 point of a family history.  With this information at your disposal, you can take real steps toward better health and care for yourself, your family, and your children.  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!

Forgiving Myself

Today was the first day of Advent.  While Lent (the period leading up to Easter) is more directly focused on repentance than the 4 weeks of Advent leading up to Christ's birth, there is still an undertone of seeking forgiveness during this time.  Maybe it's something about the image of the new, little baby Jesus - not only innocent by divine birth, but also by virtue of being a brand new babe, who hasn't yet had time to falter, hurt someone, harbor his own hurt, or do any of the other things we do in our lives.

And for my many readers who have different religious views (or views on religion), this post isn't about Christmas or even Christ, per say.  Advent just happens to be a good way of explaining a thought I had today.

In this time of seeking forgiveness from God - and with an even bigger focus on forgiveness between ourselves than seen in Lent - I realized there is one more person from whom I must seek, and to whom I must give, forgiveness: myself.

See image, and related article by Timothy A. Pychyl, Ph.D., here.

Like most Americans, I enjoyed a 4 day weekend from Thanksgiving on 11/24 through today (11/27).  Also like many Americans, I had a list as long as my medical Explanation of Benefits (EOB) forms of what I wanted to get done.  I needed to gut my room, find a lot of "missing" clothes buried in there, clean the carpet well, pack up out of season clothes and those to be donated, and figure out how to store the clothes I have.  I also needed to clean the living room, write some blog posts to have on hand over this next terribly busy month, work on some items for the AIM network at my firm, get a jumpstart on work for my current client, and due to some technical problems earlier in the week, try to nail down work for another project.  I also wanted to get some holiday shopping done, revise Shawn's budget with him, and go over our benefit options for my open enrollment period.

As I write this on Sunday evening at 11:30pm my time, I've gotten through perhaps 1/4 of my bedroom.  I sorted a tuchas-load of clothes, put most of the folded clothes that are mine away, organized and stacked Shawn's so at least they're off the floor, got the air conditioner out of the window, vacuumed the part of the floor I revealed, threw out trash, gathered some clothes to donate, and organized 3 suitcases I use to store sweaters & shoes.  It was solid work, and I felt good with what I got done.  But in the same breath from which I heave a satisfied sigh, I feel the nag of the rest of the to-do list that didn't get-done.  I couldn't go over anything with Shawn as he worked some crazy shifts and was swamped with schoolwork, and I did get some holiday shopping done (I'll have to tell you my First Black Friday adventure another time), but that still left the vast majority of the work.

A very big factor in my low-productivity, actually, was my exhaustion.  As you may have noticed, I pound away at life pretty hard most of the time.  I've put in late nights at the office, worked on the upcoming UII panel presentation and related materials, and done a million other things lately (which is why my to-do list was so atrocious in the first place).  Also, I recently switched from Provigil to Nuvigil (both "stay awake" meds) due to insurance costs, and found Nuvigil works but wears off far more quickly.  It is, as usual, a double-edged sword.  Sometimes Provigil would keep me going too long, which prevented me from getting enough rest many nights, but it would also usually stay in effect a day or two after I took it which let me skip doses on weekends when I could nap if I wanted but still be mostly functioning.  Nuvigil lets me fall asleep more easily on days I take it, but it also means I experience more significant fatigue on days I skip it - hence my multi-hour naps on Friday and Saturday.  When I let my body get the rest I know it needs, I lose a HUGE amount of time.  I know this is something you all relate to incredibly well.  And, even after waking from those naps, I was usually pretty brain fogged the rest of the night.

I'm upset about what I didn't get done.  I'm stressed about the things on my plate now for the next few days at work; I'm frustrated that for what I got done in my room it's still a pit with heaps of clothes and boxes and bins; I'm worried about the information I never got to review with Shawn.

I didn't have the best work ethic when I was younger.  It was sometime during college when I broke through my procrastinator ways, and figured out that by getting it done now I wouldn't have to worry about how to do it later.  Because it was a self-taught and honed trait, I'm secretly rather proud of my work ethic such as it is now...except this weekend sucked that out of me.  Suddenly here I am in the all-too-familiar place at the top of the "supposed-to-do" list.

This is not the work ethic I make myself live up to.  But, I think I need to forgive myself.
I obviously needed the rest.  I wasn't running around playing the social butterfly - yes, I saw a couple people but that accounted for less than 4 hours total across 2 days.  I wasn't being frivolous with my energy, I just simply didn't have enough to go around.  And, this should have been a weekend where it was ok to be in that situation, when no one was demanding much of me.  With one notable exception I don't care to dwell on and get myself worked up over, this was a time people around me were saying "stop.  Recharge.  Take some time".  That's next to impossible for me.  My instinct is to cram as much into my time as I can.  When I plan time off, I always budget my days by what type of tasks I want to accomplish (cleaning, writing, etc); it's just how I operate.  Or rather, it's how my brain operates.  Unfortunately, my body has other plans from time to time, and this weekend was apparently "time".

My body said "heck no, don't even TRY it Miss; you WILL regret it", and suddenly I was sidelined for the first 3 quarters (wow holy Gadzooks - not only did I use a football reference but it was a pun, too).  I'm angry with myself for not pushing through more work.

But I know that's not right.  It's easy enough to ask myself for forgiveness, but I don't know how to grant it to myself.  Somehow, I have to find away.  When all's said and done, I have to forgive myself for not living up to my plan.  This is especially true when in hindsight I realize it was an unrealistic plan from the start.  Gosh, I hope I'm a lot better at forgiving others than I am with myself.

With chronic illnesses (and pain and fatigue) comes plenty of chronic guilt.  We may voice the legitimacy of our limits for the rest of the world...but inside our own heads we hear so much doubt.  Do I really need a 4 hour nap?  Can't I stay up late and get this task done?  Why should I get to claim "brain fog" when other people wouldn't need to stop?  (And yes, "brain fog" sounds pretty silly to us, too, even though we live the debilitating effects.)

Yes, we do.  Yes, we need to nap - our bodies are fighting 24-7 battles against themselves.  No, we can't stay up late - what little functionality we have is strongly correlated to our ability to adhere to a schedule.  We 'get to claim brain fog' - our work is no good when it comes from a low-hanging cloud.  We need to forgive ourselves.

We need to BELIEVE it's ok to live within these limits.  We need to allow ourselves compromises with ourselves.  We need to accept we aren't going to be able to build the tower of Babel on a 4 day weekend just because "it has to get done somehow", and love ourselves anyway.  We need to ask ourselves for forgiveness and give it wholeheartedly and without delay.

Now if only there was a 'common sense' pill to help us forgive.

(PS - I found a great article on this subject by Timothy A. Pychyl, Ph.D., entitled "Forgive Yourself to Stop Procrastinating".  Take a look at why some psychologists believe this is a key to future productivity and progress!)