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

Read to me!

I'm not sure if anyone else will remember this catchy jingle that used to be on tv years ago...

Read me a story daddy…
Read to me out loud.
I’ve got a hungry mind, mama…
I want to grow up to make you proud.

A book a day is brain food.
Vitamins A, B, C…
So read me a story, daily, daddy…
Read to me.
Mama, won’t you read to me. Yeah!

(I looked for a YouTube video of it but couldn't find anything.  I did find it mentioned on the Rotary Club of Honolulu's website, so at least I know I'm not crazy and making this up in my head...)

If you remember the song, yay!  If not, I will just move on...

I remember my mom reading to me when I was little...and even not so little.  The two books I remember most are The Boxcar Children and The Ghost of Windy Hill.  My mom always says I remember the most random things.

I continued to be an avid reader, but it has been a really long time since someone read aloud to me...until now.  I visited the State Public Library's site for ebooks and found a couple titles that I wanted to borrow were only available as an audiobook, not as an ebook.  I decided to give it a try.  The titles I wanted had waitlists, so I searched for some other titles that were available to give it a try and see if I even liked listening to audiobooks.  I decided to listen to Angels & Demons by Dan Brown even though I had already read the book a couple times.  I wanted to refresh the story in preparation of reading the later books in the Robert Langdon series.  It was a little weird at first, because I have heard narration out loud in a while, but I quickly got used to it.  One thing I liked was being able to hear the pronunciation of words that I typically gloss over or make up my own sound for in my head when reading silently (usually things in foreign languages or unfamiliar names).

Anyway, I wanted to bring this up because I found it to be a great relaxing activity.  On the days when even watching tv seems too exhausting, I can lay down, close my eyes, and listen to a book.  On the days when I'm not so tired, I can listen to the book while still doing other things around the house.  Another plus is that when my joints are sore, I don't have to worry about holding a book/e-reader.  This might become my new favorite way to "read"!

- a little lupie -

Diet?

A friend posted this picture on Facebook and it got me wondering if a change in my diet would help with lupus.  #4 states that diagnosis of an autoimmune disease such as lupus could be a sign of gluten intolerance.  #8 talks about fatigue and #9 talks about inflammation and joint pain.  People have mentioned changing my diet before, but seeing this picture really helped me relate diet to the symptoms I'm experiencing.  I'm not ready to go gluten-free yet, but it is something I will be looking into.  If you've done a special diet to help with a medical condition, I'd love to hear your thoughts!

- a little lupie -

For My Mom

image credit: Lovely Living

This Mother's Day post is dedicated to who else but my wonderful Mommy!  My mom has always been my biggest supporter and teacher, but each day I find more reasons to love her even more.

Throughout my lupus journey, she has been the support system that helps get me through the tough days.  She asks me questions to try to understand what I am going through.  She never makes me feel bad for cancelling plans at the last minute when I'm not feeling well.  She praises me instead of making me feel guilty for sleeping in late or lying around in bed all weekend.  She can sense from looking at me or hearing my voice when I'm not feeling well even when I say "I'm okay."  She anticipates ways she can help me and does it before I even have a chance to ask.

Mom, thank you for everything you do for me.  I know sometimes I forget to say it, but I recognize and appreciate all the millions of things you do for me every day. You have made me the person I am today and I hope to one day be half as amazing as you are.  I love you! :)

- a little lupie -

World Lupus Day

I am a bit late on this.  I meant to post something for World Lupus Day yesterday, but I got too busy and didn't have a chance to get online.  To help increase lupus awareness, I posted this image from the Lupus Foundation of America on my Facebook page.  Please visit www.lupus.org/awareness for more information.

One thing to realize about lupus is that everyone is a "special snowflake".  No two lupus patients experience the disease in the same way.  The symptoms above are the common ones, but not all lupies experience all of these symptoms, and most lupies experience additional symptoms that are not listed.  Many of the symptoms also overlap with other diseases and conditions.  This makes lupus extremely difficult to diagnose.

Lupus is a disease that affects over 1.5 million Americans, yet there are very few people who know what it is.  Before I was diagnosed, I had no idea or information about it other than it is "something bad".  Even now, after years of living through it and reading up about it, it is still a mysterious disease that we really don't know very much about.

One of the reasons I want to increase lupus awareness is to put it on the radar and raise money for research to understand the disease and search for a cure.  More importantly, though, I'd like my friends and family to be able to recognize the signs so that if they or someone they know are experiencing these symptoms, they can talk to their doctor and start the discussion.  I experienced Raynaud's syndrome, immense joint pain, hair loss, and extreme fatigue for a while before even going to talk to my doctor because I just brushed off these symptoms as bad circulation and getting old.  If I had known more about lupus, I could have gotten diagnosed and treated much sooner.

If you would like to learn more about lupus, I have several links listed in the Other Lupus Resources tab of this blog.  Also, feel free to ask me any questions you have about lupus...I'm always willing to share my story.

- a little lupie -

Mark Your Calendars

World Lupus Day is May 10th.  Recently there was a #nationalsiblingday hashtag going around on Instagram where people posted pictures with their siblings.  It got me thinking...who comes up with these things?  Can I just claim tomorrow National Foodie Day?  With social media, it seems all you have to do is throw something on the Internet and watch it spread.

Anyway, in the case of World Lupus Day, it looks like there was an actual committee that met and they even made a fancy sounding proclamation (see below).

With World Lupus Day only a few days away, I've been thinking about what I can do to help raise lupus awareness.  What will you do?

PROCLAMATION

The World Lupus Day Proclamation was first developed in 2004 when an international steering committee representing lupus organizations from 13 different nations met in Eaton, United Kingdom to organize the first observance of World Lupus Day. The Proclamation is a call to action for governments around the world to increase their financial support for lupus research, awareness and patient services.

Each year, the Steering Committee revises the Proclamation to reflect the emerging issues that people with lupus around the world must face every day. The Proclamation serves to give a single voice to all individuals affected by this devastating and debilitating chronic disease.

The World Lupus Day Proclamation

Please join the international lupus community in urging your government to adopt and issue the World Lupus Day Proclamation.

Whereas, lupus is an autoimmune disease that can cause severe damage to the tissue and organs in the body and, in some cases, death; and

Whereas, more than five million people worldwide suffer the devastating effects of this disease and each year over a hundred thousand young women, men and children are newly diagnosed with lupus, the great majority of whom are women of childbearing age; and

Whereas, medical research efforts into lupus and the discovery of safer, more effective treatments for lupus patients are under-funded in comparison with diseases of comparable magnitude and severity; and

Whereas, many physicians worldwide are unaware of symptoms and health effects of lupus, causing people with lupus to suffer for many years before they obtain a correct diagnosis and medical treatment; and

Whereas, there is a deep, unmet need worldwide to educate and support individuals and families affected by lupus; and

Whereas, there is an urgent need to increase awareness in communities worldwide of the debilitating impact of lupus;

Now, Therefore, Be It Resolved that 10 May 2013 is hereby designated as World Lupus Day on which lupus organizations around the globe call for increases in public and private sector funding for medical research on lupus, targeted education programs for health professionals, patients and the public, and worldwide recognition of lupus as a significant public health issue.

Proclaimed This Day, 10 May 2013

source: http://www.worldlupusday.org

- a little lupie -

Rheumy Update

I had a Rheumy visit today.  He noticed my hair looked like it was thinning.  I showed him my bald spot, which I've also posted here for your viewing pleasure (along with my white hair...double boo!).  He confirmed that he thinks the hair loss is caused by the lupus and not the prednisone.  He said that bumping up the prednisone dosage may help to slow down the hair loss, but before we try that, he said to start taking a pre-natal vitamin and biotin supplements.

I told Rheumy about the random joint pain I've been experiencing -- one day in my knee, next day in my wrist, next day in my little toe.  He said that is pretty normal.  The term they use for it is "migratory".  I thought that was a good descriptor.

My blood test results did show lupus activity and my urine results showed small amounts of protein and blood.  We'll try testing one more time, and if it is still present, I'll need to take a more exact test so we can get a protein count because it could be a sign that the kidneys are being affected.  I asked him if I'd have to do the test where I pee in a big jug, but he said no.  That is the most accurate way to get a protein count, but there is another test that gets very close and is not as inconvenient.  We'll also check my ds-DNA one more time, but if it comes back ">300" again (which it showed in the past 2 tests), then it probably isn't worth it to keep testing it for now.

For now, I will stay on my 2 mg dose of prednisone.  If there is still lupus activity, Rheumy said it would be better to increase the dosage if it will keep the lupus in remission.  He said that if it were between going up and down on a 2 mg dose or staying stable on a 5 mg dose, the 5 mg dose is by far the better choice.  5 mg is still considered a low dose, and the danger of going up and down is that there is a higher likelihood that it could spike suddenly.  We'll monitor again in about 6 weeks.

- a little lupie -

Lazy?

Some days I sit around doing nothing because it hurts to move.  Last night my left knee hurt any time I tried to stand or walk.  My left elbow hurt any time I moved my arm.  It really is debilitating.  You can't see pain, and I'm not one to complain loudly, so I probably just look like a lazy couch potato.

- a little lupie -

The Spoon Theory Revisited

No, I'm not talking about missing silverware.  If you haven't heard of The Spoon Theory, you can read about it in one of my old posts.  Living with lupus is an exercise in "spoon management."  In a lupie life, spoons are your currency -- each task, big or small, will cost you some spoons.  When you wake up in the morning, you are given a certain number of spoons.  It will vary day to day, but you'll learn to manage your day by how many spoons you have.  You'll learn to prioritize to make the best use of the spoons you have been given.

As the meme suggests, there are some days when just getting out of bed and taking a shower uses up most of your spoons for the day.  I've been there.  It is frustrating and depressing when these simple activities feel like too much.

In the previous meme I posted, it talks about going to the zoo for three hours and spending the next three days in bed.  Spoon theory would say that going to the zoo caused you to go negative in your spoon balance, so you spend the next few days replenishing your supply.  Sometimes, it is worth it to do this.  It's simply an exercise of knowing your priorities, planning ahead, and managing your spoons.


- a little lupie -

Consequences

Truth.  For me, lupus is not disabling in the sense that I am physically unable to do things.  I can spend a day at the beach and have fun, but I do so knowing that it may keep me in bed for the next few days and hope that it doesn't trigger anything worse.  Sometimes it is just about knowing my limits and not pushing too hard.  Instead of spending a day at the beach, I could spend an hour there under an umbrella and take it easy for the rest of the day.  Sometimes I say screw the consequences...it's worth it.

- a little lupie -

Chronic Illness Cat

I came across a meme on the Internet called Chronic Illness Cat. There were quite a few that I could relate with, so I thought I would use some of these as inspiration for future blog posts.  It is fun looking at these memes because it helps me realize that I am not alone and there are others who are going through the same thing.  Some of the memes I came across are funny, some are vents, and some are just sad.


- a little lupie -

Hair Loss...Again...

Back when I first got dianosed with lupus, I was experiencing a lot of hair loss.  Luckily, it slowed down, and I got my full head of hair back.  Recently, however, it seems that the hair loss has started again.  I constantly have loose hairs falling onto my clothes, end up with hand fulls of hair when washing my hair, and a brushfull of hair from brushing.  There are hairballs (or Cousin Its, as hubby calls them) all over the house.  When I went to get my hair cut the other week, the stylist noted that I have a bald spot starting.  Wah!!!  :`(

Hair loss is both a symptom of lupus and a side effect of taking prednisone.  I have a feeling mine is more related to the lupus being active since the hair loss doesn't correlate with my prednisone dosage.  In any case, I hope it stops soon...

- a little lupie -

Mayhem

There's an insurance commercial -- I think it is for Allstate -- where this guy, "Mayhem," goes around making trouble to unsuspecting victims.  It is always some random "freak accident" like driving behind someone with a Christmas tree on their roof and he pulls it loose.

I feel like lupus is "Mayhem."  It strikes unpredictably and in ways you wouldn't expect.  My symptoms haven't been too bad, but last week I had pain in my knee, yesterday it was my right thumb, and today it is my left wrist.  I feel like lupus is just running around my body trying to figure out what kind of havock it is going to cause next.

- a little lupie -

Edit: Yes, it is Allstate...here's some of their commercials:

Lupie Meteorology

I'm feeling better today.  I got nine hours of sleep last night, and although I still have a little joint pain, it is nowhere near as bad as it was last night.

I was also wondering if my joint pain might have something to do with the weather.  It has been very humid lately, and I've heard stories of people's joints telling them when a storm is coming.  The jury seems to be out on whether this is just a myth or if there is science to back up the theory.  I'll start paying closer attention to my symptoms and the corresponding weather.

- a little lupie -

Ouch

My knees are killing me.  I brought the cane out of the closet because it is painful to walk...especially going up and down stairs.  The worst part is trying to look normal in public without wincing too much.

This is probably my fault because I have been pushing myself and not resting as much as I should be.  I got caught up making a Shutterfly book online last night and ended up only getting a few hours of sleep.

I bumped up my prednisone to 2 mg today.  I'll try that for a few weeks and see if it helps.

Off to go lie down now...

- a little lupie -

Be Kind to Your Pharmacist

I used to work in a pharmacy and would always get asked why the $%^@ it took so long to fill a prescription.  I mean, all they do is count pills, right?  This blog post does an excellent job explaining:

http://drugmonkey.blogspot.com/2006/08/i-realize-today-ive-done-you.html

Just a reminder to be kind to your pharmacist!

- a little lupie -

Cousin It

Cousin It is back...meaning I am shedding hair like crazy again.  :(

- a little lupie -

Sophisticated...moi?

In my last post, I mentioned that my lab results weren't too good.  When I went in for my appointment with Rheumy, I think he was surprised when he asked how I was feeling and I said I felt okay.  He went over my high ds-DNA, which is much higher than it has been in the past.  My WBC and RBC counts were low, which is somewhat normal for me.  My C3 complement, which I mentioned in my last post, is also low, which is often seen when lupus is active.  None of my prior labs had shown low C3 complement, so this is something new for me.  I also showed small amounts of protein in my urine.

Overall, though, since I was feeling okay, we decided to keep my medication the same and just keep an eye on things.  Rheumy thinks that being on the low dose of prednisone is helping to keep the lupus under control.  He thinks it is better for me to be on a low dose rather than trying to get off and risking a major flare.

I did ask him if it would be okay for me to self-adjust my prednisone dose based on my symptoms, and he said that for me, since I am a "sophisticated patient," he would say okay.  LOL.  He warned not to jump up and down too often and to stay at a dosage for a few weeks before changing again.  He said that some patients try to jump up to 20 mg then drop back down again too quickly.  I reassured him that I was only thinking about small changes, like bumping up from 1 mg to 2 mg if I am having a lot of joint pain.  Anything major, I would call in.

My last question to him was what was considered "remission."  He said that different people have different definitions -- to some, it means no symptoms and no medication.  To others, it is okay to be on some medication.  I told him the reason I was asking was that I wanted to apply for life insurance and it was one of the questions on the form.  He told me that with my recent lab results and the fact that I was on prednisone, I should probably wait because I'd likely get rejected again.  Le sigh...

- a little lupie -

Uh Oh

I have the laboratory send me a copy of my test results, so I usually see them before I go to see Rheumy.  I got the results today and they don't look too good.  RBC, WBC, Hemoglobin, and Hematocrit are all low.  C3 complement is low, which according to Google means that I am more prone to bacterial infections...a low C3 is often seen in people with auto-immune disease.  My sedimentation rate is high (34), which indicates inflammation.  And the one that got me...my double stranded anti-DNA is off the charts (>300) which indicates more lupus activity.  I don't think it has been this high for a while.

Despite the lab results, I have been feeling okay.  I've managed to start exercising a few times a week, and I feel like it is helping me.  I see Rheumy tomorrow morning, so we'll see what he says.  Last time I went, he indicated that they usually will not change my medications if I am not experiencing symptoms, despite what the lab work says.

- a little lupie -

My View Series #10

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

I was unstoppable until this disease knocked me on my behind. Words couldn't express the terror I felt. I was scared. With encouragement, support and research, it comforts me to know I am not alone. I am still unstoppable. With every bad situation, good will come out of it.— Carolyn Kingsley

- a little lupie -

My View Series #9

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

I am a very active person who was diagnosed with lupus. The slow days when I can hardly walk and the pains traveling here and there are not pleasant. But I refuse to let these things get the best of me. I stay positive, rest when I have to, take medicine when needed, and do all I can on the good days. Love those good days. I will not accept defeat. Fight! And enjoy each day as it comes.—Louise Linda Sherriff

- a little lupie -

Life Insurance

I'm not sure if I wrote about this earlier, but shortly after I was diagnosed with lupus, I had tried to buy life insurance and got denied.  I had been considering life insurance the past couple years but always put it off because I didn't have anyone that depended on my income.  I sure wish I had got it when I had the chance.

When I was denied, I was told to try again later.  If I can show that my condition is stable and/or improving, I may be eligible.  It will likely be at a higher price, but hopefully I can get something.  I'll be trying again soon...wish me luck!

- a little lupie -

P.S. Isn't it sad that the people most in need of insurance are the ones most often denied coverage?

My View Series #8

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

Educate yourself about the disease and if you don't have a strong support group, find one. Don't ever be afraid to say, ‘I need someone to listen’ or just someone to give you a warm smile. Sometimes people with lupus feel like no one understands but there are people who feel your pain and have walked in your shoes with this disease, even though it affects people differently.—Antinea Carpenter

- a little lupie -

My View Series #7

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

Not a day goes by that something in my body doesn't remind me that I have this "lovely" disease. It's hard because people look at you and think "you look fine." Just smile and try to keep a great sense of humor. IT is what IT is, but it doesn't have to define WHAT or WHO you are!—Amy Bass

- a little lupie -

My View Series #6

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

Having lupus means you embrace the good days and try not to beat yourself up during the bad. You can live a “normal” life but you have to listen to your body. Rest when you know you need to and trust that each flare will eventually pass. And you’re never alone, I promise. We’re all here to support each other.—Maurissa Tancharoen

- a little lupie -

My View Series #5

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

Don’t use lupus as an excuse to fail. You define lupus, it doesn’t define you. So get out there and do anything you want, even though people will set every limit on you. Keep asking if you don’t understand something, and research everything.—Kari Wall

- a little lupie -

My View Series #4

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

Be kind to yourself, be kind to those around you. Educate loved ones. Take time to care for yourself first so you have endurance to care for others. Find humor, chocolate and tolerance with your condition. You don't have to like it, you just have to accept it.—Paige Collins

- a little lupie -

Back on the P

I went to the Rheumy last week and described the latest problems I've been dealing with -- primarily joint pain and fatigue.  My lab results confirmed that lupus activity is up.  At this time, we aren't sure if the lupus is ramping up again or if this is just a mini-flare brought on by "over-doing it" over the holidays.  We decided to put me back on a low dose of prednisone (1-2 mg/daily) to help manage the symptoms and hopefully keep the lupus from getting worse.  The good news is that Rheumy said that as long as I don't have a major flare or have to go on 10+ mg of prednisone, I don't have to re-start my 6-month clock.

I talked to Rheumy a little about when I am supposed to call in if I notice any symptoms.  I feel silly calling in every time I have a little joint pain or feel fatigued.  It's really about knowing my body and knowing when something is out of the ordinary.  If I'm ever unsure, he said it is better to just call.

- a little lupie -

My View Series #3

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

Take every moment as just that: a moment. Truly, time, patience, and rest are essential to begin the emotional healing process of living with a chronic illness as opposed to being defined by one. The most challenging thing has been to not let lupus define me, even on the days it dictates what I am capable of doing.—Anya Brodsky-Smith

- a little lupie -

My View Series #2

I was doing some internet research on what could trigger a lupus flare and came across a magazine called Lupus Now. It had some good articles to help lupies deal with their symptoms and learn to live with lupus. They have a section called "My View" where they have readers respond to a question. In the Summer 2011 issue, they asked, "What would you tell a friend who has just been diagnosed with lupus?" I really liked some of the responses, so I'll share some of them in a series of posts.

*****

Seek the support and help from those around you. Don't be afraid to ask for help. Educate yourself but use multiple sources. Finally and most important, listen to your body! Rest when it says rest and don't feel guilty about it.—Cindy Sawyer

- a little lupie -