Monday, October 26, 2015

Another Celebrity Opens up about Lupus


Selena Gomez recently announced that she has lupus.  In an article, she said that she kept it a secret for 3 years and stepped away from the spotlight for a while because she needed time to take care of herself.  She has now come out in the open and brought more attention to the disease, which I think is a good thing, especially since many of her fans are young girls.  Hopefully people become more educated about this mysterious disease.



The above is a quote that I found early in my lupus journey, and it is one of the greatest lessons I have learned from my struggle.  I have become much more empathetic to those around me.  Like many chronic conditions, lupus is an invisible disease and people (other than those who know me well) probably can't tell when I am suffering.  I think back to when I was at my worst, and I can't even imagine how Selena dealt with all of it while constantly being in the media spotlight.  People were not kind to her when she canceled shows or put on weight.  Now that they know she is dealing with health problems, they will probably be more understanding.  It is sad that she had to open up about her private life in order for them to be kind.

"Be kind, for everyone you meet is fighting a hard battle." -Plato


- a little lupie -

Monday, March 23, 2015

Lupus Hawaii Closed

Just saw this update on the Lupus Hawaii Facebook page:

Lupus Hawaii has closed permanently. If you need more information, please see our website or email us. Thank you. 
www.lupushawaii.org
info@lupushawaii.org

- a little lupie -

Sunday, September 7, 2014

Rheumy Checkup

Blood tests verified what I already knew...the lupus is active again :(

Rheumy gave me some samples of Duexis to help with the pain, but when I got home, I realized it wasn't safe to take while breastfeeding, so I'll probably just use some plain ibuprofen (Duexis is ibuprofen with an acid reducer).

I also had protein in my urine, so we're going to do a protein test with my next blood test to make sure the lupus is not attacking my kidneys.

We're not going to start prednisone or azathioprine or any other medication yet.  We'll check back in 6 weeks to see how I'm doing.

I wrote a few weeks ago about being stressed out by a big project at work.  Well, I've semi-resolved that...I applied for a new position at the same company.  I got it, and as I transition off the project, I'm finding that I have been feeling better.

Hope to have some good news to report in the next update...

- a little lupie -

Wednesday, August 27, 2014

Work Stress

I'm on a new project at work and it has been stressful.  It is a high-priority, high-visibility project with a chaotic process and a tight timeline.  Being thrown into this after 3 months of maternity leave and while I'm still trying to get the whole mom thing down has been a challenge.  The stress combined with the lack of sleep has caused my lupus to flare and I'm sick again.

I've been having trouble finding the right work-life balance.  I'm in meetings all day and sometimes can't find the time to pump or even eat.  Somehow I've got to find the right balance because right now it is taking a toll on my health.

- a little lupie -

Saturday, July 26, 2014

Baby Girl is Here!

First off...Hi, Aunty R!  Thanks for continuing to come here to check on me despite my horrid lack of updates.

I just realized that the last time I updated this blog was before Baby was even born and she is now 4 months old!  Wow, where did the time go?!

I was induced at 39 weeks at the suggestion of the MFM.  Baby was full-term and healthy and they didn't want to risk me having a flare that late in pregnancy.  Because I was induced, I stayed a night in the hospital to help ripen my cervix with Cervidil then got Pitocin  through an IV to start inducing labor.  It was a slow start and after 16 hours, I was only at 2 cm.  I was lying in bed thinking that nothing is happening when I felt a pop and a surge of pain...my first real contraction.  From there everything went quickly.  I was having contractions every minute or two and after about 10 of them, I asked for an epidural.  That came and the hardest part was trying to keep still while having contractions.  Soon after the epidural, I fell asleep.  A couple hours later, I woke up and was at 10 cm.  We waited another hour or so to let the labor progress naturally and called my parents to come down to the hospital.  After almost 4 hours of pushing, Baby Girl K was born!  Despite being long, I'm lucky to have had a very smooth labor and delivery and pretty easy recovery.  Baby was small, but healthy, and we instantly fell in love with her!

The first month with a newborn was tough.  My body was still recovering from childbirth, breastfeeding was a challenge, and sleep was limited.  My lupus began to flare.  The joint pain and the fatigue made it even more difficult to deal with a baby that wanted to constantly be carried and fed.  When I went to see Rheumy, the lab results confirmed that the lupus was active.  Because I am breastfeeding, it is preferable not to take steroids, but a small dose would be okay.  I opted not to take any Prednisone and instead manage the pain by taking NSAIDs like Aleve or Ibuprofen.

In the second and third months, I was starting to get the hang of things...until I was hit with mastitis (infection of the breast tissue) twice, which later turned into an abscess.  Mastitis is often caused by a clogged milk duct or when milk is not fully drained from the breast.  Based on the location of my blockage, I believe mine was caused by the elastic band of my nursing tank being too tight.  Mastitis is awful.  In addition to the tender pain in the breast, you get flu-like symptoms including fever, chills, and body ache.  The worst part is feeling horrible and still having to take care of a baby who needs to be fed every 2-3 hours.  Mastitis is treated orally with antibiotics.  I am allergic to penicillin, so I was given Clindamycin for my first bout with mastitis, and I ended up breaking out in a rash.  For my second bout with mastitis, the doctor wasn't sure what to give me and ended up giving me Ciprofloxacin.

After I finished ten days of antibiotics, I still wasn't feeling better and the tender spot on my breast was getting bigger and more sore.  I went to the doctor and she immediately sent me to a surgeon because she suspected that it had turned into an abscess.  An abscess is a pocket full of pus.  Once it forms, the antibiotics are not able to get to it and it must be drained either through a needle or with surgery.  As soon as the surgeon saw me, he knew it was a huge abscess and suggested we do an Incision and Drainage (I&D) under general anesthesia rather than in the office under local anesthesia as he was originally thinking of doing.  I've talked to others who have done it under local anesthesia and they said it was the worst pain of their life -- way worse than childbirth -- and they were crying the whole time.  So, when the doctor suggested general anesthesia, I was relieved.  I went into surgery the next day and got about 5 oz of fluid drained.  The one inch incision needed to heal from the inside-out and would take several weeks to close up.  One concern that I had was that several milk ducts were cut in the process and so milk would leak out of the incision if I were to breastfeed.  The surgeon actually suggested that I stop breastfeeding so that the milk ducts and incision could heal.  I didn't want to stop breastfeeding, so I continued but had to deal with the messiness of leaking milk.  Two months later, I'm finally all healed up and still successfully breastfeeding.

So, with all of these physical stressors to the body, my lupus continued to flare.  I went back to work last month and got put on a big project that is adding additional mental stress.  Baby, Daddy, and I are currently all suffering from a cold, so I know my immune system is out of whack.  My joint pain has been getting worse, and I had trouble walking a couple days last week because it was so bad.  I saw Rheumy a couple days ago and he said I can take a low dose of Prednisone if it continues to be bad, but I'm still trying to go without it.  I find that the best "cure" for me is getting a lot of sleep.  Luckily, Baby is a great sleeper (*knock on wood*), so I have been able to get a good amount of sleep and feel better now.

Despite all the health issues above, I am doing okay.  My body has gone through A LOT this past year and is hopefully on the road to recovery now.  When things get tough, all I have to do is look at my sweet baby girl to know that it's all worth it.

- a little lupie -

Tuesday, March 4, 2014

Is anyone out there?

*tap tap tap*

Hello?

Is anyone out there?

Sorry I have been gone so long.  I drop a bomb that I'm pregnant and then I disappear for five months...

I've actually been really busy writing on a private blog I created for my pregnancy and this blog has been neglected.

I thought that I'd have a lot of lupus-related pregnancy stuff to write about here, but my lupus has remained pretty dormant throughout pregnancy.  I'm continuing to take Plaquinil and having monthly check-ups with Rheumy.  I've had a couple days of joint pain, but other than that, the lupus has been under control.

I have had a lot of fatigue, but I think that is more due to the pregnancy than the lupus...it takes a lot of energy to grow a person!  The pregnancy fatigue many women feel in the first trimester is actually very similar to what lupus fatigue feels like.

I'm in my final month of pregnancy and my baby girl will be here any time now!  I'm actually more worried about how lupus will affect me after pregnancy.  I know I'm in for sleepless nights and lots of hormonal body changes...both of which can cause the lupus to flare.  I'll need to try to get as much rest as I can.

Anyway, I just wanted to say hi and let you know I haven't totally forgotten about you!  I've been feeling guilty for not writing more.  I can't promise that I'll be writing more often as I'll have a new little person to care for soon, but I'll try to check in every now and then.

- a little lupie -

Friday, October 4, 2013

A Big Update

Things have been pretty quiet on this blog for a while.  In the past, I've always said that no news is generally good news because it means that nothing much has been going on.  However, that's not the case here...there has been A LOT going on -- I just wasn't ready to blog about it yet.  So...*drumroll*...I'm pregnant!



As I've mentioned in the past, lupus pregnancies are considered high-risk, so they take a little more planning and monitoring to ensure a healthy mother and baby.  I've talked to Rheumy about the possibility of starting a family from our very first appointment, so it has always been something we thought about when it came to making decisions about my treatment and medications.  I've also met with a Perinatologist (MFM) about what medications are safe to take during pregnancy and how pregnancy and lupus can affect each other.  In addition to this planning, it is recommended that I be in remission for 6 months before getting pregnant for a greater chance of a healthy pregnancy.

At my June appointment, Rheumy gave me the go-ahead that it was okay to start trying.  A month and a half later, I started feeling nauseated and just "not right".  At first I thought it was my lupus flaring up since I had been over-exerting myself.  When the nausea got worse, however, I took a pregnancy test and found out the real reason for the way I was feeling!  Since then, I've had a slew of doctors appointments -- I see Rheumy every 4 weeks, OB/GYN every 4 weeks, MFM every 4 weeks, and Endo every 4 weeks.  And this will increase as we get later in the pregnancy.  I'm currently at 15 weeks, and so far everything looks good and I am progressing well.  It's been quite an exciting couple of months and I hope to be updating this blog more often to share how things are going.

- a little lupie -

Sunday, August 4, 2013

Quick Update

Had my checkup with Rheumy yesterday.  Aside from a few symptoms including joint paint every now and then and a small sore on my lower lip, I have been feeling pretty good.  My gluten test results were not all in yet.  He said that one test came back negative, but we're still waiting to hear back from the other test.  We're going to try weening off the prednisone again.  He's dropped me down to 1 mg and will check-in to see how I'm doing in a few weeks.

Also, since Rheumy knows I like to do my own medical research, he suggested a website to me:
http://www.uptodate.com/home/uptodate-benefits-patients

- a little lupie -

Wednesday, July 10, 2013

Hypothyroidism ( my other nemisis)

Last week I had my first appointment with an endocrinologist.  I was diagnosed with hypothyroidism about 10 years ago, but have always had my primary care physician manage my treatment and medication for it.  However, since I am now thinking about getting pregnant, my PCP wanted me to see a specialist.

An endocrinologist is a doctor specializing in the glands that produce hormones released into the bloodstream, including the thyroid gland.  The thyroid is a gland in the neck that produces the thyroid hormones triiodothyonine (T3) and tetraiodothyronine (T4), which are primarily responsible for regulation of metabolism and affect the growth and rate of function of many other systems in the body.  Hormonal output from the thyroid is regulated by thyroid-stimulating hormone (TSH), which is produced by the anterior pituitary gland, which itself is regulated by thyrotropin-releasing hormone (TRH) produced by the hypothalamus. Regulation of T3 and T4 production is done through a negative feedback loop.  When T4 levels are high, TSH production is suppressed.  When T4 levels are low, TSH is stimulated.

Diseases of the thyroid include hyperthyroidism (an over active thyroid) and, what I have, hypothyroidism (under active thyroid).  With hypothyroidism, the amounts of T3 and T4 remain low and often have symptoms of weight gain, fatigue, baldness, dry skin, depression, and cold intolerance.  Does this sound familiar?  These are also very common symptoms of lupus, and thus, it can be difficult to know which condition is causing which symptoms.  Hypothyroidism is often treated with synthetic hormones.  I take Synthroid (generic name: levothyroxine), which is a synthetic form of T4.  My hormone levels are monitored quarterly so that the dosage can be adjusted as needed.

The thyroid is especially important during pregnancy because uncorrected thyroid dysfunction could have adverse effects on the development of the fetus.  It can also lead to complications such as premature birth, low birth weight, and increases neonatal respiratory distress.  Demand for thyroid hormones is increased during pregnancy, and thus may require additional treatment.

When I went to see the endocrinologist, she reviewed my blood work and found my thyroid levels to be in the normal range with my current medication.  This post is getting long, so I'll do a separate post explaining how to interpret the blood test later.  Although my results were right in the normal range, Endo said that because I am thinking about pregnancy, she would like to see my levels in the higher end of the range.  She increased the dose of my medication from 50 mcg daily to 75 mcg on Monday, Wednesday, and Friday, and 50 mcg on the remaining 4 days.  I'll check back with her in about 6 weeks.

I felt Endo was very thorough and professional.  I sat down with her in her office to talk before she moved me to an exam room for a physical evaluation.  She asked me questions about why I was there, my situation and history, and went over my blood work and what it all means.  I thought it was kind of interesting that she asked if I was the type to go online and do a lot of research.  I said yes, and she noted it down but didn't really have a reaction.  I wonder if doctors like patients who do a lot of research online, or if they find it misleads them and make their jobs harder.  I know I shouldn't always trust Dr. Google, but I like having my own information to get another perspective than just the doctor's.  It also helps me prepare for my doctor visits so I have time to process the sometimes confusing information and formulate questions.  Anyway, back from my tangent, Endo did a good job explaining things, but was a little "clinical" at times -- not cold or unfriendly, but not necessarily warm and comforting.

I did learn something new about my condition from this appointment.  I tested positive for Hashimoto's disease, which is what is causing my hypothyroidism.  Hashimoto's is an autoimmune disorder, like lupus, in which the immune system attacks the thyroid gland and affects hormone production.  It is the most common cause of hypothyroidism in the US.  I had heard the term before, but didn't know that it was an autoimmune disease.  (Heck, before lupus, I had never heard the term autoimmune!).   I found this very interesting because I've read that it is common to have multiple autoimmune diseases, and in my case, it turns out to be true.

Sunday, June 16, 2013

For My Dad



This Father's Day post is dedicated to my Dad.  I've mentioned a couple times how lucky I am to have a great support system, and my Dad is at the core of it.

I can always depend on my Dad and know that I can call on him any time I need help.  He's incredibly patient and has a quiet strength that inspires me to stay strong, even on the difficult days.

I love you, Dad!  Thank you for always taking care of me!

- a little lupie -