Where in the World has Autoimmune Gal been?

Image Source

Some of you might have noticed that I haven't been blogging as much.  My twitter and Facebook presence has also dwindled.  But I promise there is good reason for my less frequent communication.

It also happens to be a very exciting and wonderful reason--my husband and I are expecting our first child.  Yes, Autoimmune Gal is pregnant.

We didn't know that having a family would be a possibility given my multiple autoimmune and health issues.  It took lots of communication and coordination with multiple doctors to just plan for the possibility of trying to get pregnant.

Important medical questions and issues had to be addressed.  What medications would I be able to stay on?  Did I need to change medications or lower doses before becoming pregnant or was it safe to wait until a pregnancy was actually confirmed?  How would we keep my autoimmune disease in check, while trying to protect the baby?  Would pregnancy make my autoimmune manifestations worse, the same, or better? And these were just the tip of the iceberg.

With pregnancy many of these questions do not have clear cut answers.  Medicines aren't regularly tested on pregnant women so there is less data than one would like on safety and fetal outcomes.  The doctors have constantly reminded me that if I'm not healthy, the baby won't be either, but this is really tough complicated stuff.  And we've certainly added another big and of course wonderful variable to the careful health balancing act.  

Beyond my autoimmune issues, my pregnancy is super high risk so I'm being monitored you might say within an inch of my life.  I guess you could say I'm super super high risk.   My doctors appointments have more than doubled and every health issue that comes up has to be thought through even more carefully and methodically.  Right now, we're trying to enjoy the pregnancy while keeping our fingers double and triple crossed that everything will be OK.  We know this is such an amazing blessing, but we still have a long way to go.  

So that's my update on where I've been.  I love writing and communicating with all of you and feel like something is missing when I'm not.  I'll keep writing as much as I can.  I know when the baby comes it will be a whole new kind of busy too!

Wise Readers: How You Cope With Patient Burnout?

Thanks to the fabulous and wonderful blogger Julia from Reasonably Well for writing about last week's piece on "Patient Burnout" and asking readers for how they cope with not just having a chronic illness, but the reality of being a chronic patient.

She got some great responses ranging from the importance of humor and laughter, being kind to yourself, and making sure that your medical care doesn't become an experiment for your physicians.  That last one is an important reminder that being a patient means making decisions with your provider,  not just following his/her medical advice blindly.  We also can't forget as another reader, exemplified that venting can be a powerful force and letting our frustration out can sometimes help us move on to the next thing.

I've shared all the responses below since I personally found them extremely helpful and insightful.  Thanks to those who commented for their wisdom.

 Sue said...

I have found that having a sense of humour is very important. Life can beat you down at times but being able to laugh helps things tremendously.

 Heda said...

Hard to even think about this one. One day at a time I guess is one option. Definitely accepting the illness is vitally important. Keeping a sense of perspective. Guarding against the temptation to make things worse than they are. Finding time for friends and family. Being kind to yourself. Respecting yourself especially when it comes to being able to say no to things that you really might want to do but know you can't. Not letting specialists use you as an experiment for their latest hobby horse. No, absolutely no, unnecessary tests. Way too much emphasis on discounting possible obscure diseases when sjogren's is the most obvious cause of a symptom. Is that enough? And I thought I had nothing mush to say about this topic until I started. LOL.

 Kelly said...

Up until recently, I relied on the ostrich maneuver: head in the sand, ignore symptoms or treat with OTC/home remedies and lifestyle changes, stay away from doctors as much as possible and repeat the mantra, "not that sick, not that sick, not that sick..."

But now I am waiting for a promised referral to the nearest Sjogren's Clinic to get a final word on whether or not it's Sjorgren's and if so, do we begin treatment of some sort. If not, then what is it??? The magic words to get the ostrich's head out of the sand were, "Interstitial Cystitis."

Better lay in a supply of yarn as knitting in doctor's offices helps me tremendously. Even when I can't focus enough to read, I can knit and that feels productive. Instead of a wasted day, I have a new sock for me or cotton washcloth for my grandson's pile of face-cleaning cloths.

 Unknown said...

I started with temporal lobe epilepsy in 9th grade, and the onset of endometriosis before that. I had to deal with the epilepsy, obviously, but the endometriosis- I took remember the words my mother's gyno told her: when it hurts bad enough, you will return! (sounds like Arnold in a movie, hmm?) Well, seizures require ongoing maintenance, infertility and the pain from the endo is what finally forced me to get treatment.

Now, with psoriatic arthritis, breathing problems, bladder problems, heart problems, tingling problems, ibs problems from the as yet undiagnosed something else....

what is most frustrating to me is not always knowing which doctor to go see...the internist or the rheumatologist; the dermatologist or the rheumatologist...etc.

Also, the person (people) who I feel is (are) my biggest supporter (my aunt, and my mother), are constantly coming up with off the wall wacky suggestions or bringing up the worst case scenario of someone they knew who had the same disease, implying that my psorisis (which is mild) is going to land me in the hospital also, instead of just being supportive. Or, that my one foot that the swelling refuses to go down in, is going to be like her friends (who has a bone fragment that now requires an ankle replacement). It's not the same thing!! I keep wanting to shout.

aaah. thank you! for letting me say that. That's my patient burnout, just the frustration of not always knowing who to turn to for help. I often go to my primary care, simply because I'm not sure who to see.

Coping with Patient Burnout

A Second Home for Many Chronically Ill Patients

There is a new kind of burnout that I fear the medical profession has failed to realize.  What about patient burnout?  We're always hearing concern about physician fatigue and quality of life--and that the medical system, its administrative burdens, and payment system has created an untenable situation for physicians. But what about how this impacts the people the health profession is intended to help and serve? Patients, especially those like many readers, who require constant care.

I'm almost hesitant to count the number of doctor appointments that I've had in the last month.  But it's somewhere around 15.  That means there were only 5 weekdays that I didn't find myself sitting in a waiting room often for more than a half hour, on an examining table,  and being poked or prodded. It's meant preparing for these appointments, commuting to them, and dealing with the stress of making medical decisions with my physician.  While I'm generally happy with the group of physicians that I've cultivated over the last few years, that doesn't mean that these appointments aren't somewhat stressful.  Questions of health are never to be taken lightly.  

And my job as patient extraordinaire does not end when I get home. Just last week, for example, my eye doctor prescribed new medications for a persistent infection I've been fighting for the last two months.  However, another physician had concerns about that choice.  That meant I needed to to get both of them to actually talk on the phone and figure this one out.  I wrote emails and called both offices to help make it happen.  It eventually did, but it took work and me being a pushy patient.  In the end, they both decided we could stick with the new regimen.  This process did take up a considerable amount of time and energy, and it was unsettling to start a new medication and then be told by another physician it should be immediately discontinued.  All in all, it was certainly stressful.

Beyond this, doctors and their staffs are not the only ones that have to deal with insurance companies and billing.  Patients do as well--and we often have to catch mistakes that are made my both.  Now, I don't want this post to turn into a list of rants and complaints.  Because the important question is how to cope with all the work we have to do as patients without feeling exasperated and overwhelmed.  I, for sure, don't have this down to a science by any means.  But when I do feel overwhelmed by the medical system I have some techniques that can help me feel me more grounded and that my only identity isn't that of a patient. 

My Survival Tips for Dealing with Patient Overload

1) Morning Meditation.  Meditation has many benefits for people with chronic illness and those without.  For me, just taking 10 minutes to breath clears my head and makes the day ahead feel less overwhelming.  When I meditate, I generally feel more focused and prepared when I walk into a doctors appointment and better able to cope with what lays ahead. 

2) Lists.  Lists help me with everything, especially keeping my healthcare organized.  If I write down everything I need to do in the morning to deal with my healthcare and pick the 2 or 3 that REALLY need to get done, it helps me prioritize and make my healthcare tasks seem finite as opposed to infinite.

3) Do one thing for you, but not related to your healthcare everyday.  Preferably something that you enjoy.  Even if it's just a phone call with a friend or family member, going for a walk outside for 15 minutes, or reading for half hour.  While it might sound trite, this really helps me stay connected to the non-patient part of my life.

4) Scheduling Appointments.  Figure out what kind of appointment schedule works for you and your emotional and physical well being.  Would you rather have a number of appointments crammed into one week or do you do better when they are spaced out?  If my health allows, I try to have no more than two doctors appointments in a week and like to make sure I have at least one "off" week every month where my routine can feel more regular. It's taken me a bit of experimentation to figure out that this adds more balance to my life. 

5) Accept that this is a marathon not a race.  Similar to accepting that chronic illness is a long term battle, so are all the parts of dealing with the healthcare system that come with it. I've learned that even if I try to take care of everything related to my health as perfectly as possible, new challenges will emerge.  I won't get a gold star by pushing and exhausting myself to be the perfect and most efficient patient.  Conserving physical and mental energy for the long haul is a priority.

6) Take a Patient Vacation when you can.  Recognize and celebrate the periods when you're health is more stable.  This doesn't mean neglect the important aspects of daily care like medication regimens. But we can celebrate these "better" times by allowing yourself to try something new or get back to a hobby or a gentle exercise routine that your health might have been a barrier to.

How do you deal with patient overload and frustration?   Please share your strategies. I would love to post them in an upcoming blog.