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 -