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!
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?
I couldn’t resist a cute photo of the fam. Teegan is mad-dogging the camera and he normally smiles ALL the time.
It’s hard to believe that Teegan is already six months old. Everything has gone so incredibly fast this time. He’s not a little baby anymore! Teegan has such an easy going personality. He just wants someone to look at him so he can smile back. He definitely is a second child and unfortuntely is frequently waiting for attention becuase Mila tends to hog the limelight…
He just started sitting up for a few seconds at a time!
He had a lot of projectile spit up when he was first born. In fact, the first few weeks he would almost stop breathing because his spit up would come out of his nose and he couldn’t breathe. It was pretty scary. The ENT doctor scoped him and he was diagnosed with acid reflux. We recently switched to omeprazole and he is so much better. He eyes don’t water and he doesn’t arch his back like he used to when he would get a bout of reflux. He’s also gobbling down his bottles voraciously and his growth has taken off. This week we started some oatmeal cereal, which he devours. He’s not so sure about the pureed carrots or avocados yet…
I also can’t believe this is my 7th week back at work. I was really nervous for the transition this time, but it’s amazingly gone really well. I am working full time but am hopeful sometime in the next year I will go down to part time (2 full days, 3 half days). Being back has been really nice in unexpected ways. My patients are really happy to have me back and they are excited for my family. With everything that happend during and after my pregnancy, I also gained more experience and empathy about what it feels like to be a patient and have unknowns and fears about your health– which definitely makes me a better doctor.
So now we’re just enjoying life as a family of four. I have my “parejita” (little pair) as my patients like to say.
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.
Towards the end of my pregnancy, I noticed that one of the moles on my left upper arm had become red and was bleeding. I knew that my history of sun exposure (with my fair skin) and lupus make me higher risk for skin cancer. So I saw the dermatologist who did a biopsy and it came back as a “Spitz Nevus with dysplasia”. I actually had to look this up, and it’s no wonder I didn’t remember- they are uncommon, about 1 in 100,000. They look very similar under the microscope to malignant melanoma (the bad kind of skin cancer that can be deadly). Even though a Spitz Nevus isn’t deadly, since they are so similar, they recommend that they are completely cut out.
When I went to the surgeon he told me I would end up with a scar, but I was completely unprepared for the size of the scar I have. Plus I was not prepared to have the “train tracks” aka “centipede legs” from the 8 stitches. It’s right on the front of my arm and VERY visible, especially in Southern California where people wear lots of sleeveless shirts.
I know it’s just a scar. And in the grand picture it doesn’t matter. In fact at this moment I couldn’t be more blessed! I have a perfect baby, my lupus is stable, and my husband is amazing…. But I’m still mourning my old arm and that this new look is now me.
I have several projects in the works with fun posts coming up, but thought I would write about something that has been on my mind a lot lately.
I’m losing my hair.
Every morning when I brush my hair I am losing handfuls of it. Then during the day it continually sheds all over everything. My ponytail is about half the size it used to be. In light of everything that has happened in the past year it seems insignificant, but it still bothers me. I am imagining myself in a wig soon.
I think the most frustrating part is that I don’t know what is causing it- so I don’t know how long to expect it to last. There are so many possibilities: a lupus flare (when lupus itself is more active you can lose a lot of hair), the medications I am taking for lupus (I just recently stopped azathioprine, but am still taking plaquenil and prednisone), the high fever that got me hospitalized in August (physical stress can cause hair loss), hormone changes (we are undergoing fertility treatment) or just plain ol’ emotional stress.
I started taking the supplement biotin to see if that will help.
Keep your fingers crossed that it will stabilize and slow down soon.
I had a little more excitement than I was hoping for this past weekend. I spent 4 days in the hospital. At least now I really know what it’s like to be a patient.
I was going to do a post while there, but when I went to my blog I couldn’t open it. I was given this notification:
Sorry for the blurry screen shot. It says:
Per company policy you have been denied access to the URL: http://sewmuchtodo.com, Reason: Not allowed to browse Nudity category.
I just can’t seem to find the nudity that they refer to on my blog. Let me know if you find it. 🙂
I’m back home now and will be posting some exciting finishes soon!
This weekend is exactly what I needed. I felt like I walked around with a smile from ear to ear for the past two days.
I am in New Orleans for the annual ACP Conference of Internal Medicine. I’m not sure how many physicians are here, but there are lots. During the day there are probably at least a hundred different lectures to choose from and in between lectures and in the evening there is time to spend relaxing with colleagues.
There are a lot of people from MN here, mainly people I know from residency. After spending 3 years there, it feels like I am “home” this weekend.
It is also navy week in New Orleans so over lunch on Thursday we toured the USS WASP. I got to hold a gun.
Thursday night we went to Emeril’s (the famous chefs’ first restaurant). We had an amazing time- and they were able to make me a very tasty vegan meal (my dietary choices have provided my colleagues with a lot of material for teasing me).
And speaking of dietary choices (vegan), I’ve been getting my share of red beans and rice.
It’s been a great time, but also excited to see my husband tonight. Four nights away might be my max.
Lupus. It’s that weird disease that feels impossible to diagnose. Managed by rheumatology which is the specialty that manages all those elusive diseases….
Of which, I now have. I have lupus.
The last several months have been an interesting journey. Life has been throwing me a lot of curve balls and it seems that each time that I felt like I had a handle on it, life would throw me another. In early October, right when we moved out here, we had our first miscarriage. Very early at about 6 1/2 weeks. Then we were lucky and got pregnant right away again. Yay! And saw a heartbeat, but then lost that baby around 9 weeks. So, this prompted a battery of tests with more and more abnormal results…. which finally lead up to the phone call I received yesterday: “You have lupus and you should start taking plaquenil today”.
I spent the rest of the afternoon in shock. I would see a patient, come back to my office and cry, then go out and see another patient. I’m sure I looked like a crazy doctor with bloodshot, puffy eyes.
Right now I feel overwhelmed, scared, and helpless. I mean, why lupus? Why an autoimmune disease? Why not something like high cholesterol where I can change my diet? And why a disease that can cause kidney failure? (Right now I can only seem to remember lupus patients on dialysis or with kidney transplants- not those that are functioning well).
I imagine I will have many more blog posts on this in the days/months to come as I wrap my head around what this means for me and my family (and hopeful future family).
I had a little downtime between patients this morning (scheduling glitch, but such a nice Friday morning surprise) and I was catching up on reading the stack of NEJM (New England Journal of Medicine) journals on my desk.
I started the article Accessing Supplement Safety- The FDA’s Controversial Proposal and when I got to the third paragraph, I thought: I need to let my previous colleage Pieter know about this article, it’s so well written. Then I glanced at the top of the page, and it was WRITTEN by PIETER COHEN. 🙂 So, I guess he already knows about it.
(<– This is Pieter)
Pieter is an amazing doctor, someone who has truly inspired me. Please read his article. There is also an audio interview with him here.