lupus

Ugh.

That’s definitely not what I was hoping my next blog post title would be. This was supposed to be the year of my health, and so far it hasn’t exactly turned out that way. It’s like lupus needs to repeatedly knock you on the head and remind you that it’s unpredictable. And the moment you try to control and predict it, you’re bound to run into trouble.

Stress is clearly a trigger for my disease activity, and work is definitely not lacking in stress. That’s really the only specific thing I can seem to point to as a culprit (there’s also my two little humans, ages 2 and 3 that I care for). But I know lupus doesn’t have to follow rules, so, who knows why it’s really bothering me now.

More of the usual— fatigue, joint pains (mostly just right knee and ankle), malar rash, nose ulcers, some low grade fevers and a bit of weight loss.

I’m taking Plaquenil, Imuran, just finished another prednisone taper, and NAC. My complement levels are staying consistently low (you don’t want them low). I’m considering switching to CellCept at the advice of my rheumatologist….

I bought a new sewing machine a few weeks ago, hoping to spend some time de-stressing and creating, but unfortunately I’ve been too wiped to actually sew. But soon! And I still have a few projects to post about that I finished a month or two ago.

-Erica

You just can’t predict lupus

Well, the one thing that lupus is always teaching me, is that it’s unpredictable. You do everything a certain way hoping (pleading) that you will get a certain outcome, and then, it just seems to do what it wants anyways. So…. a month after increasing my imuran and adding NAC, my lupus is still flaring. Unfortunately, it usually takes 2-3 months to see maximum improvement with imuran because you have to wait for your cells to turnover. I REALLY didn’t want to do steroids again because I’m so paranoid about my blood sugars, but I finally caved in. Fortunately I’m already feeling improvement on day #3. It’s only a 9 day course this time and hopefully that will be enough to reset my system.

Work has been very busy which likely hasn’t been helping. So, in honor of my year of health, we decided to have our sitter come for a few hours in the afternoon on my day off so that I get a chance to crawl into bed and rest. Our kiddos aren’t napping consistently anymore, which has been hard since I still need a nap!

Still striving for that elusive Work-Life Balance….

-Erica

ps. Tomorrow is our 6th wedding anniversary and we’re going to Disneyland. Somehow I’ve lived in Southern California for 5 years and I’ve NEVER been!

N-Acetylcysteine and Lupus

Despite my New Year’s Resolutions, my lupus has been more active lately. I’ve been feeling very fatigued (although it’s hard to determine how much is due to being a working mama and how much is due to lupus). I’ve also had mouth sores, pericarditis and joint pains. My blood tests confirmed my suspicions and when I saw my rheumatologist she changed my medications and took me off of work for a week to rest. In addition to the plaquenil (which I always take) and the imuran, she added N-Acetylcysteine, otherwise known as NAC.

When I was in residency I remember using this to treat acetaminophen (tylenol) overdoses and also giving it to patients to protect their kidneys from contrast dye given with CT scans (although I don’t know if this has proven to actually be protective).

There was a small study published in 2012 where lupus patients treated with NAC had decreased disease activity and decreased fatigue after 3 months of treatment with 2.4-4.8g per day (um, that means I’m taking 8 pills a day!). There’s a larger, longer trial underway right now. I’m personally about 3 weeks into my own personal trial. So far I haven’t felt that much different, but it looks like it takes a few months to start to see the difference. So, I’ll keep you posted, fingers crossed!

– Erica

2017: Helping Lupus Through Healthy Lifestyle

It’s officially 2017: My house is quiet (which is a rare occurrence when living with a 2 year old and a 3 year old), and I’m enjoying ringing in the new year under a very cozy quilt. In fact, it’s the first quilt I ever made (circa junior high in the early 1990’s).

Thinking back on this past year, I realize it was a year filled with several endings and new beginnings. Some intentional and wanted, and others, not so much.

  • The most obvious was leaving Los Angeles and moving to Orange County. This was bittersweet as Jake and I started our married life in Los Angeles, and actually, started our life as a family there as well. We lived in a beautiful little neighborhood and loved that our area was actually walkable (which is rare in Los Angeles). However, things were just getting increasingly complicated as the kids started to grow, and our two bedroom unit was shrinking on us. We couldn’t commit to buying in a location that gave us more space but locked us into long commutes, so, in the end, we jumped ship. I had formed several close relationships with colleagues and quilting friends and it was hard to leave that behind. But luckily, I’m blessed with new, fun colleagues and a very social neighborhood with lots of families with young kids like us. Teegan has learned how to open the door by himself and has been known to run out of the house down the sidewalk to look for his friends.
  • The second major change for me is accepting that we are going to be a two kid family. It almost feels selfish to say that I’m sad we won’t be having anymore children (when we are completely blessed with two little miracles), but I can’t help but mourn the loss. We always wanted a third and were planning on another, but as I recovered from the first two pregnancies it started to sink in how sick I had actually been. I was hospitalized with both, had preterm labor with both, was on super high doses of medications causing me to have gestational diabetes and a tibial fracture. And thank goodness, my kidneys hung in through both. This past year I had another miscarriage and almost immediately my blood sugars were in the diabetic range which was shocking to me since I wasn’t even on steroids at the time. So, after some real soul searching we  decided it’s too risky for my health to carry another baby, so we’ve officially decided not to try/have another.  I know it’s the right choice because I need to be healthy for my two magical children (and amazing husband), but it’s still hard to close this chapter.
  • But that leads me to the beginning of the next chapter, the one that 2017 is about: my health.
    • I’ve learned that stress directly affects my lupus symptoms (and lab values), so focusing on decreasing my stress is vital to my health. Not all people have such an obvious barometer of their stress levels. My biggest “de-stressor” is sewing. So, there are two things that I am doing to promote this: 1) just sewing (aka the house doesn’t have to be clean and I don’t have to cross everything off my to-do list first– because let’s face it, I live with a 2 and 3 year old, so that’s an impossible feat), and 2) I moved the sewing machine out of the office and into our bedroom because it’s my favorite room to be in, and it’s cozy. I don’t care if it’s weird to have a sewing table in your bedroom.
    • I also know that I’m clearly prone to becoming diabetic at some point in my life– two bouts of gestational diabetes definitely tells me that the odds are stacked against me. I used to exercise regularly, and loved it, but since kids it’s literally been nonexistent. So, it’s time to get back into it. I also have 3 vertebral compression fractures that occasionally cause me some pain so I’m starting by becoming engaged in my physical therapy program and walking. Nothing earth shattering, but regular and non-stressful. Plus, I’ve discovered audio books and so walking becomes extra amazing.
    • And the last thing to really promote my health and wellbeing is to consistently eat clean. By this I mean a low inflammatory diet– no processed foods, no added sugars. I also avoid dairy and meat because they are known to be inflammatory in auto-immune diseases. I have a lot of food allergies which complicate things for me, so this also involves spending time researching and planning what will be best for me.

So, I’m excited to show you my new sewing finishes and update you on how thing are going. I only have one measly finish in 2016. I’m hoping for maybe 12 this year???

What are your new years resolutions?

-erica

 

I couldn’t resist a cute photo of the fam. Teegan is mad-dogging the camera and he normally smiles ALL the time.

Yes, I’ve been MIA

Mila moved into a toddler bed and Teegan is mobile!

I know I’ve been MIA from here…. and I miss it. And I also really miss sewing — it just hasn’t happened.  It’s hard to find balance when you are working full time.  When I’m finally home with my family I don’t want to take any time away from the littles. And since we only have two bedrooms, Teegan takes his afternoon nap in our bedroom, which also happens to be where my sewing stuff is.  And at night, after bedtime, well, let’s just say….. it’s usually my bedtime too.

It’s been about 9 months since I broke my leg and things are healing. It only bothers me once and awhile, and not enough to warrant much attention. I’m looking forward to figuring out how to add running back into my schedule (ha!).

I’m off all of the immunosuppressants for lupus and am only taking plaquenil (which I will take lifelong because it’s proven to protect the kidneys, I call it “Vitamin P”).  And I don’t have any active lupus symptoms at this time- no cystitis, pericarditis, oral ulcers….. YAY!

AND my blood sugars finally returned to normal, which is so awesome. I was (self-admittedly) overly worried about it which was making me stressed out.

Mila hasn’t been eating well and has been complaining about tummy aches, so we are working with the doctors to try and figure out what is going on. And Teegan is delayed in some milestones, but he was born three weeks early, so I’m trying to not get too stressed out yet. But, I wouldn’t mind a few prayers for the littles and for me to stay strong.

So, that’s whats been going on around here. Hopefully I won’t continue to be such a stranger.

xo, Erica

 

 

A Broken Leg

This postpartum period has been both easier and more challenging than it was with Mila.

Teegan is such a good baby. He is not fussy like Mila was. He loves to be cuddled, snuggled and held. At night he sleeps right next to our bed and he will open his eyes every so often to look at me to make sure I am still there as he drifts off to sleep. People told me that little boys have a special connection to their mamas and I can already see it. He still gets up every 2.5-3 hours overnight to eat, but he goes right back to sleep pretty quickly. I can’t hardly complain about anything.

However, the same cannot be said for my body. I’m having a harder time recovering from this pregnancy. My lupus was much more active, requiring lots and lots of medications, in high doses. I was hoping I would be able to taper down off the medications right away after he was born but unfortunately things are still flaring.

The high doses of steroids caused me to have high blood sugars, necessitating insulin during the pregnancy. As I’ve started to go down on the steroids my sugars have not gone back to normal as I hoped and it’s possible I may end up with pre-diabetes. Nothing is for sure yet because I’m not completely off the steroids, but I’m a little nervous. I’m hoping my body will recover over time.

Also, the steroids weakened my bones. I started running after my postpartum visit which was so nice after being sedentary for so long (first for preterm contractions and then after the c-section). On my third run/walk I developed severe pain below my left knee and couldn’t finish my run. Turns out I fractured my tibia right below the knee. It’s a horizontal fracture that luckily didn’t displace the bone. So now I’m on crutches for the next 6 weeks. Luckily I have great help with the little ones. My mom was able to extend her stay for an extra week and now Jake’s mom and sister are helping out. It takes a village, right?

This is just a little bump in the road- I’m very blessed to have two adorable, precious babies and an amazingly supportive husband and a wonderful family. Hopefully I’ll find some time to sit at my sewing machine since it is my happy place….

With my mom and my babies at the LA zoo, before crutches.

With my mom and my babies at the LA zoo, before crutches.

-Erica

Meet Teegan!

This post is WAY overdue. But that’s because things have been busy. In a really good way.  There are only a few things about Teegan’s birth that resemble Mila’s, otherwise, it was entirely different.

As for the similarities– Both times my labor started with my water breaking (this only happens in about 10% of births), and both times I had pre-term labor around 31 weeks but they were born term babies (Mila was born at 37 weeks + 2 days and Teegan was born at 37 weeks + 3 days). Other than that, they were entirely different.

I was really hoping to have another natural birth with Teegan like I did with Mila, but unfortunately he had other plans for me.  Teegan was persistently breech during the entire pregnancy, which meant a c-section for me. I had ultrasounds at every visit (since I was in the high risk ob clinic) and he never budged from his position. He was always head up and his head was always on the right side of my belly (it truly felt like a big, giant baseball).  One week before he was born they attempted to do an external version, which was unfortunately unsuccessful. I was hopeful he would still turn on his own, but he apparently wasn’t on board with that plan.

My doula told me that many women seemed to go into labor at times that worked for them which seems like a biological protective mechanism. She used the example of a woman not going into labor until her other kids were out of the house (at preschool or with grandma) and mom could actually focus on laboring baby-to-be. This made so much sense to me and I think that is exactly what happened with Teegan.  I was really hoping to make it through Thanksgiving and also was hoping I would go into labor when my OB was on call (so she could be the one to do my c-section).

We had a lovely Thanksgiving at our house (with a tofurkey and fancy, disposable plates and cutlery) and that night when I went to bed I was very thankful we had been able to enjoy the holiday. I joked that my OB was on call that night so it wouldn’t be a horrible night to have a baby.  Then, at 4AM my water broke. Since Teegan was breech and they needed to do an urgent c-section, we weren’t able to labor at home, and instead had to rush to the hospital.

The c-section went flawlessly, without complications (and I was fortunate that my OB really was on call and able to do my c-scection).  Unfortunately I felt extremely sleepy during the procedure because there was morphine in the spinal so I didn’t feel as present as I was when Mila was born. Luckily Jake took pictures.

Meet Teegan ()

Teegan was perfect at birth. He weighed 6 lbs, 10 oz. He latched on without any trouble. And about 3 days later we came home with our new little man. And now we’re a family of four.

It’s incredible.

Oh, and how did we pick Teegan for his name? The week before he was born, on our way home from the external version, we drove past the Hollywood Palladium Theater and saw the band Tegan and Sara on the marquee. I wondered if Tegan could be a male name. We looked it up and saw that it is about 50/50 with multiple spellings. Immediately we knew that it was perfect when we found out it means “Little Poet” since our little guy had been writing his own story during the entire pregnancy.

Welcome to our family, Teegan.

– Erica

(I have several other posts to come… somehow I have managed to start and finish a baby quilt since he was born 6 weeks ago).

Breech Baby Boy

I was really fortunate to have a beautiful natural birth with Mila. After an unpredictable pregnancy it was amazing to know I was strong and it felt great to be in control of how she entered the world. We were blessed with an incredible doula and Jake was a wonderful birth partner. My labor was only 6 hours from first contraction to Mila’s birth which is on the shorter side for a first pregnancy (this is probably because I had preterm contractions consistently from 31 weeks on).

I have been looking forward to another natural birth with this guy, but he seems to have different plans for us. In fact, he seems to have been in charge this whole pregnancy. I’m so curious to find out if that holds true in his personality once he makes his actual appearance in the world!

Mila was head down the entire pregnancy. In fact, they couldn’t even do accurate measurements of her head because she was so far down in my pelvis! This guy has been persistently breech. He has never once been head down on any of my ultrasounds (and because of my medical issues I have had ultrasounds at every visit this entire pregnancy, now twice per week!).  Also, I can see his head when I look at my belly so I know which direction he is.

We attempted a ECV (External Cephalic Version) this week where they gave me medicine to relax the uterus and then three ob’s actually manipulated him to move to a head down position.  It was painful but definitely not unbearable and nothing compared to actually giving birth. They were able to turn him three times, but then he immediately proceeded to turn head up again. His heart rate dropped each time after they turned him head down as well (but it recovered pretty quickly).

So, now I’m convinced that there is a reason he isn’t head down. It’s not that he doesn’t know he can go that way, he just chooses not to.

I would really like to avoid a c-section because of the medications I am taking for my lupus. The high dose, long term steroids interfere with wound healing, the immunosuppressants make me more susceptible to infections, and the aspirin makes me more likely to bleed during the operation.

I’m still hoping that he will decide to change his mind and go head down before his big arrival, but I think I need to start accepting the fact that this may not be how he enters the world. And that’s ok.

I have a c-section scheduled for 39 weeks although it’s not likely he will actually incubate that long (although fingers crossed, who knows what he actually has planned?!).  We will have a more emergent c-section if I go into real labor or my water breaks before then.

I’m still incubating and trying my hardest to rest. It’s horrible to have the nesting instinct and not be able to act on it…. I’m 36 weeks now!

36 Weeks (1)

– Erica

Preterm Labor and Lupus

I was really hoping to avoid preterm labor during this pregnancy since I’ve been working hard at resting and incubating at home. Unfortunately my lupus has just been quite active during this whole pregnancy…

Last Saturday (a little over a week ago) I went into preterm labor at 32w4d. Luckily this was a already a few days later than with Mila. 32 weeks is actually a pretty important milestone in baby development but still means that baby would be in the NICU for several weeks after birth. Definitely not what we have in mind for our little guy.

I was admitted to the hospital and luckily things didn’t continue progressing. While here I developed several of my lupus flare symptoms (oral ulcers, pericarditis- inflammation of the heart sac- and some cystitis). My blood tests were also consistent with active lupus. So I received high dose IV steroids to calm things down (in addition to my other lupus medications). The hope is that if my lupus will calm down, then hopefully baby can stay snuggled in for awhile longer.  A few times a day things seem to get a little more active but then luckily they quiet down again and the overall trend has been improving.

One of my girlfriends sent me some yarn and knitting needles and I’ve started to make a baby blanket. I’m definitely better at sewing, but it’s really nice to have something to do to keep my hands busy. This is the start of my first try at a baby blanket– it is knit on point so it looks like a little triangle so far.

photoThanks to Craftsy and YouTube for instructional videos.

Unfortunately a few minutes after that photo, this happened…

IMG_0269

And little Mila? She’s having the time of her life at grandma’s house. I’m not even sure she misses us (although we haven’t FaceTimed with her because she has a history of crying when she sees people she wants to hug). My mom will be flying out tomorrow to watch Mila at our place once I get home. It’s such a blessing to have the generous help of family during this time.

I’m hoping to go back home tomorrow. It’s always a humbling experience being on “the other side” of the doctor/patient relationship.

– Erica

Officially Incubating

25 Weeks

I’m 25 weeks pregnant and am officially incubating full time. This pregnancy started out pretty low key. I hardly had any morning sickness (as compared to little Miss Mila), which is how I actually knew we were going to have a boy this time– always trust a mama’s intuition! Near the end of my first trimester my ob actually said to me, “You’re acting like a normal pregnancy”. It was one of the best things I could have heard.

But not too long after that, my lupus decided to start acting up. I started getting pericarditis (inflammation of the lining of my heart that causes chest pain), joint pains, mouth ulcers, fatigue and even started losing my hair (hey! you’re not supposed to lose your hair during pregnancy!).  So, I started taking high doses of prednisone. But after a month, things weren’t calming down. So back comes the azathioprine. I was less scared about adding all of these “don’t take during pregnancy” drugs this pregnancy since I took them while pregnant with Mila, but still definitely nervous about the fact it meant that my lupus was active. Second trimester miscarriages are much more likely with lupus, and pre-term labor is also very common with up to 50% of lupus babies being born prematurely. With Mila I went into pre-term labor in the middle of a morning clinic at 31 weeks pregnant. Luckily they were able to stop the labor and I went home on rest and she stayed in to grow until 37 weeks.

For the last month my ob has been suggesting I take a break from work and I have been resistant. I kept asking for a few more weeks to see if things would get better. But they weren’t getting better and I haven’t been able to decrease my medications. I was so exhausted. So, this week at my appointment, I agreed to make growing our little boy my full time job.