Wednesday, January 28, 2015

Being an Autoimmune Mama: The First Months

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The last months since giving birth to my daughter have been a wonderful adventure, surprising in so many ways... and overwhelmingly exhausting.  It’s hard to describe how much I’ve learned in such a short time from the basics of how to change a diaper and swaddle a baby –-which seemed daunting at first—to how so many things about motherhood feel instinctual to me.  I never understood how my friends would talk endlessly about the small things they would do with their babies. Now, I love the cuddling, cheek kisses, and silly games we play daily. Things that are interesting only to a parent of an infant, but now bring delight to me daily.  

At four months, we've now crossed the early infant stage and we're getting to the more interactive stage of the daily smiles, coos, and hand sucking that are all so much fun.

Now, for my confessional: I must admit that I had real fears before she came was that I would not be able to take care of her because of my health issues.  My worries ranged from big picture fears to specific practical concerns.  I literally lost sleep worrying that she would miss out on what she deserved from her mommy.  I didn’t want her to feel less love than other babies do because of my own health needs.

At the same time, I was also worried about the day-to-day practical challenge of lifting her and taking her around.   Would I be able to carry her if I was tired?  Would she just be trapped inside most of the winter because of neuropathies and arthritic pain? 

So far, I am pleased to be able to say that I have been pleasantly surprised. Yes, I am tired like any new mom…but I am thrilled to report that we are all ok. I am generally as healthy as I was prior to my pregnancy. My daughter, after an early arrival, has caught up and is growing and advancing well.

That’s not to say this has been easy.  My husband and I took steps to make sure we could mitigate the amount of strain I would have. We knew flexibility would have to be our motto... When interviewing pediatricians I realized distance would have to be a factor.  One got extra points because she lived a five minute walk from our house. Then, I wouldn’t have to lift the little one in and out of a car for every doctor’s appointment and could conserve some energy. 

At times, I would hear other moms to be and moms discuss their exact birth plans or how they would exclusively breastfeed and never give their child formula. My husband and I knew we had to approach everything with a different philosophy…what keeps me and baby healthy is the goal--not ultimate perfection. 

Here a few other steps we took to manage a baby with a chronically ill mama that I thought I’d share:

1)   Get Help! Let other family members pitch in and even feed your baby especially during nighttime hours so you can rest.  I found this extremely helpful for the late evening feeding around 11pm or midnight so I can go to sleep early and get some rest before middle of the night wake-ups.  As others know with autoimmune disease, sleep is key and without it symptoms can get worse. 
  
2)    As long as she eats, we’re ok! While breastfeeding is considered best according to my doctor, we also decided before our daughter was born she would also have formula sometimes to preserve my strength.  (It turns out that because she was underweight the pediatrician insisted that we supplement with formula anyway.)  Breastfeeding is exhausting even for healthy moms, but add autoimmune disease into the mix and it can be very depleting.  I breastfeed and pump as much as I physically can (about 5 times a day), but having formula as an option makes it easier for me to take a break when I need to.

3)    Convenience is key.  As I mentioned above, try to make everything as easy as possible for yourself like having a pediatrician nearby. There have been so many more doctors visits than I expected that being able to get there easily has been the most important thing.

4)    Limit Carrying. I try to carry less and order online if possible.  The need for diapers and baby supplies is constant.  When I lift things, I get more tired so I’ve found diapers.com and other baby sites to be a lifesaver.  They are also cheaper, especially when I find discount codes that I track down regularly.

5)    Freeze, Freeze, Freeze. If someone offers to cook for you, say YES.  Having a baby is depleting and I didn’t have the strength to cook at first.  Now that I’m basically recovered, there really isn’t much time to make a wholesome meal. I’ve tasked my mom with making food for me and freezing it so I have something that I can heat up quickly and have ready within minutes.

7)    Assign Tasks.  Being a mom means being a manager. If you’re lucky enough to have family and friends helping you, make sure to have jobs for them.  I promise something always needs to get done whether its dishes, laundry, or sterilizing bottles. Otherwise, everyone will just stare at your little bundle of joy. I learned this one the hard way when I found myself doing dishes after company came on four hours of sleep.

8)  Take time to be a family unit too.  I must admit having our home invaded with family has driven is driving my husband and I a little crazy.  We try and balance all the company by having one day a week when it’s just the three of us.

9) Hand-me-downs help!  At first I thought we would need to get everything ourselves since we had no family nearby with young kids. I found out that the more I talked to friends about what I was looking for, people started sending us stuff. Friends, relatives form afar, even friends from a moms group have all generously been happy to share . (I promised to give everything back of course.)

This is just a short list of things which have made having a little one easier as an autoimmune mama that I wanted to share. What have some of you done to make the infant phase a bit more manageable while living with autoimmune disease?  I'd definitely love the advice and I'm sure other moms  with chronic illness would to.

Tuesday, November 18, 2014

It's A Girl!




I have some big news that I’ve been meaning to share; my husband and I have a little girl!  She came last month and earlier than expected, but thankfully she’s perfectly healthy and doing wonderfully well.  We couldn’t be happier and more excited.  It’s truly a miracle given my health issues and a very high risk, complicated pregnancy that we’ve been blessed with this little baby and are now a family!

Life has a whole new rhythm.  Feedings, diaper changes, and tons of hugs, kisses, and snuggles are what make up my days and nights. We’ve been lucky to have lots of support from family, but this is a whole new kind of work.   Like many first time moms, I’ve got lots to learn and everything is new to me.  And of course, I’ve got the added challenge of trying to figure out how to take care of myself and keep my health stable so I can take care of her.   When do I fit in rest, putting in eye drops, eye soaks, keeping my medicine organized, doctors appointments? I know this will be an ongoing process, but for now I’m just basking in being a new mommy and doing the best I can with our little one.

I'll try to keep posting when I can, like right now--when she’s peacefully napping, but I just had to share our joy with all of my wonderful readers!


Friday, July 25, 2014

Happy World Sjogren's Day!

Courtesy of the Sjogren's Syndrome Foundation


Happy World Sjogren's Day! Well, technically I'm a couple days late on this one.  But spreading awareness about Sjogren's should be more than something assigned to a particular day or month of the year.  Like many of you, I want to do my small part to try and make Sjogren's a KNOWN autoimmune disease.

Here are some important tidbits about Sjogren's that are easy to pass along to family and friends:

-Sjogren's is the 2nd most prevalent autoimmune disease impacting an estimated 4 million Americans

-The disease takes an average of 5 years to diagnose.  That's way too long and many patients develop unnecessary serious complications due to disease progression and lack of early treatment.

-Many think Sjogren's is just a disease that impacts the moisture producing glands, tears, and saliva, BUT that is just the tip of the iceberg.

-Sjogren's can impact any organ or body system including joints, lungs, kidneys, blood vessels, digestive and nervous systems. (I've had to include a favorite Sjogren's diagram above and it's not even comprehensive).

-Many with Sjogren's experience debilitating fatigue and joint pain.

-Compared to other autoimmune diseases Sjogren's has been under researched, under treated, and often minimized.  We need to change that!  (Read an excellent article by Dr. Sarah Schafer a physician with the disease to understand how much needs to be done here)

My mantra has become Sjogren's is Serious. I hope others in the autoimmune disease community can help us speed this message as we fight for better diagnosis, recognition, treatment, and care.