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 -

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 -

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 -

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 -

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 -

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 -

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.

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 -

Update

Went to see Rheumy today...my blood test results were pretty much the same as my last appointment -- low white blood cell counts, low C3 complement, high ds-DNA, high sedimentation rate, and trace amounts of protein and blood in my urine.  While these are not the greatest results, they represent what is pretty "normal" for me, which is a good sign that I am relatively stable.

I've been feeling pretty good this past month.  Only slight joint pain, and not nearly as bad as it was a couple months ago when it was painful to walk or move.  My hair is still thinning, but not falling out as much as it was before.  I've been a little fatigued, but not too bad.  I'm going to stay on the low dose of prednisone (2 mg/daily) since it seems to be working for me.

I also asked Rheumy about his thoughts on a gluten-free diet.  As I mentioned in a prior post, I had heard that a gluten-free diet could help with some of the symptoms I have.  Rheumy said that he doesn't specifically prescribe a gluten-free diet for his lupus patients, but if I want to try, it wouldn't hurt.  He just hasn't seen any definitive studies yet.  Of his patients who have tried it, he said about 1 in 4 will notice an improvement.  He did say that it is easy to test for gluten sensitivity/intolerance with a blood test, so he ordered the test for me to take during my next blood draw.  Until then, I'll stay on a regular diet since going gluten-free now will alter the test results and may show a false negative.

- a little lupie -

Letter to Family & Friends

I did not write the letter below, but it describes how I feel perfectly.  It is long, but worth a read.  Credit to the author: Jenn Schoch.

- a little lupie -

" Letter To Family & Friends"

This article is also useful for understanding and explaining the difficulties of living with lupus, but can apply to any chronic autoimmune disorder.

My illness is a difficult one to understand, even for me. Many of the problems it causes are invisible and difficult to anticipate. I need you to understand that my life always is subject to change because of the unpredictable nature of the illness with which I must live.

First, let me explain the depth of this illness -

- My joints and muscles are under constant attack and can be very sore and painful.

- My skin is very sensitive- sometimes to touch, to heat or cold, sometimes even just to sunlight.

- My vision, hearing, sense of smell, and sense of taste all can be affected. I may get a very dry mouth, have mouth ulcers, have very dry eyes, or just have a bad taste in my mouth.

- My body or breath may develop an odour.

- The fatigue I get can be overwhelming- walking two feet can be a marathon some days.

- My kidneys, lung, heart and liver can all be damaged by this illness and its treatment.

- There are emotional side effects that come and go- like depression, memory loss, and difficulty concentrating.

- The medication I take has physical side effects- it may make me gain or lose weight, my face and appearance may change, there may be other effects, too.

- I may need to use walking aids, other aids like a helping hand, or sometimes even use a scooter or wheelchair. Other times I may need no help at all.

- I might not be able to drink alcohol or eat certain foods because of my medication and illness.

- The illness is here for the rest of my life- sometimes I will seem very well and back to the old me and sometimes I may become very ill and need to be in hospital. It's unpredictable.

- This is not contagious, and there is no evidence that it is something I have inherited or will pass down to children.

This is all because my immune system doesn't work properly anymore - it's lost its sense of purpose and has turned against my own cells and tissues instead of just protecting me from infection. Sometimes, I will go into remission meaning that I will do pretty well for a while- and sometimes, I will have flares, meaning that things will get very bad. I can't tell when a remission or a flare will happen, and I don't know how long either might last.

There are some things you can do which would make it much easier for all of us and would be grateful if you would take the time to read this and try to understand.

- My body is in a constant battle against itself. This means that I will have good days, bad days, and many days in between. I can't always tell from one day to the next, or even sometimes from one hour to the next, how well I will be, so please be forgiving when I must change plans at the last moment. I don't mean to let you down.

- Some days I will have all the energy in the world- and the next day I will be half dead. It's just the way things are - please don't say "You were okay to do this yesterday".  I can't help it.

- Please don't judge me as a complainer, whiner, or as a person making more of their illness than seems necessary. Many of the problems I have are invisible to other people so please be patient, understanding and compassionate.

- I don't want to spend my days in misery, so even if I have pain, am very tired, or even if I am just worried, I will still try to be happy and enjoy myself. This doesn't mean I am physically better, it just means that I am coping. My health will never be "back to normal". "Healthy" and "better" will always be relative terms for me now.

- I get lonesome and miss being part of the active life I once lead. Remember me - call me - visit me - don't give up on me. Please don't forget me or stop asking me to do things because I so often say no. It's not because I don't want to, it's because I can't. With a little help from you, I might be able to get more involved. I want to be part of your life.

- It's okay to talk about what is happening. I would rather you just ask than pretend you haven't noticed how different I am or just avoid me. It's okay for us to talk about how my illness affects you too. I won't see it as a betrayal if you talk to me about your frustrations with my illness as long as you don't blame me.

- It's okay to say "I know you don't feel well, but I don't want to hear about it today". Don't feel that you are obliged to listen to me but if you ask how I am, I am going to tell you so if you don't really want to know, don't ask!  I will try to remember that although my illness is a huge part of my life, you may not want it to be 

a part of yours. If you find me overwhelming, tell me! Challenge me, but please do it with love and compassion.

- Don't try to tell me that all I need is a little exercise, or just to get out, or try a certain pain tablet, or some new treatment, etc, because it works for you or someone you know. Please don't feel rejected if you try to offer me a solution for my problems and I don't take you up on it. I am under close medical care and am doing everything I can.

- You may think I just need to push myself a bit harder or that I am giving in to things too easily. One of the problems with this illness is that if I try too hard, it can set me back considerably. I have to be more patient with myself and accept my limits- I don't like it this way either but I have come to realise that one day of trying too hard and doing too much could make me much more ill for weeks. I need to be slow but steady.

- Sometimes, I need to sit down and rest, or take a tablet right away. When it gets like that, I can't wait. I really am at the mercy of my body and even though it may seem selfish I know that if I don't take care of my self, my body will get even with a vengeance because that is the nature of this disease.

- Some of my medication may suppress my immune system and make me more prone to catching some illnesses. Please let me know if you have a contagious illness like a cold or flu. A simple illness it can be quite devastating for me and I have to be careful.

- Please don't belittle my pain or fatigue. It makes me crazy when I hear "Yeah, you may think your back aches, but you just sit all day- I spent the day in the garden!"I wish I could have pain because I did something I enjoy- not just because my body is hurting itself. It is okay though to tell me how you are feeling- you may find that I am more compassionate than most when you tell me how you feel because I really do understand pain and fatigue, and you will find I may have some advice that can help you!

- Please don't tell me I need to lose weight. I know. The tablets I take (steroids) make me gain weight, increase my appetite, and change the way my body stores fat. I am doing the best I can.  Don't criticize my eating, please. It won't help either of us.

- I don't choose to be down and miserable but depression is part of this illness. I need you to remember that I didn't choose any of what this illness has done to me- I am struggling to learn how to manage, to cope with what it does to me, to grieve the loss of my health and to do the best I can to live the best life I can. Although I am grieving the loss of who I was before this illness struck and sometimes I get so frustrated I just can't help feeling sorry for myself, it's not just in my head- it's an effect of the illness, too, that I become depressed and anxious.

- Sometimes I will have "brain-fog". It's common in this illness to have moments when your memory is poor, or to find it difficult to think clearly. It will pass. It's not permanent- so if something is important to you please don't forget to remind me! I will be grateful. It's also ok to remind me to write something down, or to check back with me later. Please don't think I am ignoring you, being difficult, or just don't care. I feel terrible when I forget.

- I need to know if and how I can ask you for help. Sometimes, I will need more help and support than other times. Please let me know if you can help. If you can give me a lift, take me to an appointment, help me with an errand or a task- maybe make a hot dish for me some night when I can't manage to make a meal- please let me know. When I am stuck in the house because things are bad, please come sit with me, even if there is nothing you can do. Little things like calling me every couple of days just to check in- sending me a note, card, or email 

can make a huge difference. If you can, please reach out to me. Even if you can't do anything specific, just be my friend. Your friendship is the most important therapy I have.

- I can still do things for you. Please don't stop asking me to babysit, to run an errand for you, to do something I have always done before when I was well. I'll be honest if I can't- please, if it's something I did before, it's okay to ask me again.

- Please respect handicap parking and encourage others to do the same. Sometimes, people with illnesses like mine can't get out if they have to walk far- if everyone respected handicap parking, life would be easier for me and people like me who need those special spots. Defend handicap parking and it makes a real difference.

All in all, I need you to realize that I am the same person I have always been- my heart, soul, hobbies, interests, sense of humor and mind are all still there- it's my body that is turning against itself.

Please accept me the way I am, please forgive me for the things that have changed, please forgive me and try to understand if I disappoint you, try to accept that I am not in control of what this is doing to me. Please forgive me if I let you down ? I know that these changes are hard on everyone around me, too. I wish it could be different, for all of us. With time, compassion and love, things will eventually settle and we will all adapt.

These are the things I will try to offer you:

- I will be honest with you about my limitations, and if I need to change plans I will try to be as considerate as I can and tell you as soon as possible.

- I will ask you for help if I need it, but I will accept if you can't help. I will not have any hard feelings if you say No- I will respect your limits. Please don't ever feel guilty for being honest with me. I will try not to take advantage of your kindness and support.

- I will accept if you ask me to stop talking about my problems and what is wrong with me? I don't always realize that I may getting a bit wrapped up in myself and my illness sometimes, and I don't want to overwhelm you- just be honest with me.

- I will do the best I can to be cheerful and happy, and try to be good company if you visit or call.

- I will try to explain honestly if you ask me about my illness, symptoms or medication.

- If I am feeling sorry for myself I will try not to take it out on you.

- I understand that you also need to take care of yourself- if you need time, space or to get away for a bit, just be honest with me and I will do the best I can to understand. I really do understand the need to take care of yourself more than most people.

- I will do the best I can to keep myself well, by taking the medications as I should, by doing what my healthcare workers advise me to do, and through a good diet and good rest. I won't make myself any sicker or fail to take care of myself.

Thank you for reading this and trying to understand.

Jenn Schoch, MSN, CRNP

Facebook.com/LupusAndMe