Friday, May 10, 2013

I'm a little bit lupie.

I have lupus.

Phew... there! I said it.

Technically, I have mixed connective tissue disease which presents itself as lupus and most likely is lupus.  Was that confusing enough for ya? That's life with an auto-immune disease. What that really means is that I exhibit most of the critical criteria to be diagnosed with lupus but I also exhibit symptoms of other rheumatic conditions like RA. I'm kind of a mess, and since my auto-immune probs most resemble lupus, I just tell people I have lupus. It's easier that way. Today, I have decided to tell you because it is World Lupus Day.

What exactly is lupus?
That's a really good question. I'm convinced that not even the experts can explain it in precise terms. It is a very complicated disease which has multiple symptoms and presents itself differently in almost every patient. In a nut shell, it is an auto-immune disease which, in layman's terms, means that the immune sytem is messed up. Instead of just attacking foreign invaders, like viruses and bacteria, the immune system of the lupus sufferer also attacks the body's tissues.

What are the symptoms?
Well, as I said earlier, there are a lot of them. The biggie and what seems to be the common thread among us lupies is joint swelling and pain. This can be immobilizing at times, folks. It can affect every joint, including between the vertebrae. That's not fun! It explains why doctors sent me for MRI after MRI over the years trying to find a herneated or slipped disc and why it took until December of 2012 to get a correct diagnosis.

Lupus flares can create the same shock waves of pain as a spinal injury, put the sufferer in a wheelchair or bed for days or weeks, and then suddenly... (POOF!) all better. That's because it is a disease of flares and remission. Sometimes you feel like you're near death's door; other days you feel just fine. For that reason, it is also called an "invisible illness." It is very common for the lupus patient to be told she doesn't look sick. Trust me, she is.

It also causes a wide varity of other problems including photosensitivity, skin rashes, respriratory problems, mental fog, constant flu-like conditions (imagine living with a recurring fever and cough), and FATIGUE. Lupus is also a cause of infertility and miscarriage, and in serious cases, can cause kidney failure, heart disease, and stroke.

That sounds scary.
Are you going to die?
As long as I take care of myself, it does not seem that lupus will "cut my life short."  My prognosis is excellent, and my doctor seems to think that as long as I take my meds and keep my lifestyle as healthy as possible that I will be just fine. That sounds easy enough, but for an over-acheiving homeschooling mom who wants to model a strong work ethic and pour myself out for others and in the Lord's service... pacing myself is torture. Lupus will most likely not be the death of me, at least not any time soon, but it has been the executioner of many of my dreams. There is much I would like to write about that topic because I believe God is always good and what He ordains is always right. I don't have room in this post to say what is on my heart, so for now, I will sum it up by simply quoting Job, "The Lord gives and the Lord takes away. Blessed be the name of the Lord."

Do you have any of the major problems?
Given that I have likely lived with lupus for 20 years, it is wonderful news that my vital organs show no real damage. After four months of meds, my pain levels are WAY down.

I am still struggling with fatigue and major brain fog. I have to write things down, set my phone's calendar to remind me to do just about everything, and I canNOT be interrupted. That's not a pride thing (most of the time ;). It's that if someone stops me mid-sentence, I cannot just pick up and resume where I left off. I have to return to point A and work my way back through it all- IF I can remember where point A was. That is why I have NOT been in the blogosphere much lately. I just can't process all the info out there and I often can't collect my thoughts enough to get them publishable.

Will you get better?
Pray that I will. My doctor says that I stand a good chance of going into a long or even permanent remission. I am following his orders to the tee.

Will you continue to teach... to blog... to homeschool?
Yes, yes, and yes. Teaching is something that, with modifications and boundaries, I can do. It keeps me appropriately active and happy.

Blogging is something I want to keep going but can only do as I have the mental energy to do. I won't be tackling any big blogging projects in the near future. I am loving all the activity going on in my archives, though. Thank you to those who keep reading and/or sending others this way.

And homeschooling... you have to understand that it would take death itself to stop me from homeschooling my sons. They are in the home stretch as Ben starts high school in August. Brian is on Ben's heels. (Ben is Orville, and Brian is Wilbur, btw. I've decided that since they are now old enough to own their own blogs, they are old enough for me to call them by their real names on mine.)

With that said, I am getting real about what I need to teach directly and I what I need to seek out help for. I am learning about setting priorities and taking care of myself while fulfilling my duties as a Christian wife and mother. So much to say, so few brain cells....

What can I do for you or someone else I know with lupus?
Whether you are an irl or online friend, please remember me in your prayers as you can. Also, today is World Lupus Day. If there is someone in your life with an auto-immune disease, please take a little time to educate yourself. Empowered with that knowledge, show understanding. Most likely, your loved one feels like she has a severe back problem, arthritis, the flu, demensia, nagging allergies, morning sickness, mono, and poison ivy all at once. On top of that, she is carrying the pain of lost children and/or lost dreams, living in a body which is aging more quickly than it should, and contending with a whole lot of misunderstanding about her condition- not just from friends and acquaintances, but within the medical community, too. She is having to fight for her health by finding the right medical care, following the correct treatments, and finding a balance between too much and too little. Give her your love and kindness. That's the best thing we can do for anyone, whether she has lupus or not. :)

If you want to know more about lupus or how to help your friend/relative with lupus, return soon. I want to share with you what I learned from spoons.

Yes, that's right.

Spoons.

Blessings,
Dawn

4 comments:

Kellie said...

((((hugs)))) What a wonderful surprise to see your post tonight. I almost didn't check my reader because I'm trying to get to bed early so I can get up early for a track meet. But I'm so glad I did! I learned quite a bit from your post. I knew you were suffering and have been praying for you, but I didn't know the specifics. Praise God that he has enabled you to still homeschool despite all you've been going through. I'm sure that will leave a lasting impression on your boys -- you are modeling how to trust and depend on God in the hard times. Thank you for sharing -- I'm sure it's not easy.

Homeschool Dawn said...

Thank you, Kellie. What a sweet and encouraging perspective! I am so thankful to God and give Him praise for so much!

Heather said...

I am SO PROUD of you!!!! I have adopted the spoons mentality in my world too-it works for fibro:) I LOVE YOU!!!!

Homeschool Dawn said...

Thanks, Heather. I LOVE you, too! I so hope I can write about the spoons soon. I love what the original author had to say, but have some rubber meets road in the Christian life apps to share. Maybe we can talk about it in June, and you can help me collect my thoughts. ;)