I’m thankful to be writing this blog post, because just a few days ago I was struggling to speak.

On Saturday morning I asked my parents to come home early from my brother’s house, because I felt ‘woozy.’ Something wasn’t right, and I was home alone with the kids. They came home right away, and my Mom took me to get medication. I went into the store and picked up my prescription and she went into the adjacent grocery store to get some things for dinner.

I made it back to the car before her, and sat down and waited. Something strange began to happen. I got that woozy feeling again, but this time I felt like I was going to pass out. And then my left arm began to go numb. My left fingers tingling, along with my lips and tongue. I dialed my Mom’s cell phone and did my best to tell her to get back to the car, I couldn’t breathe right. Something was really, really wrong.

I remember her getting in the car. I remember directing her to the ER. I remember nurses taking off my clothes and asking me questions. I remember talking to a doctor who said I might be having an anxiety attack. I remember telling my Mom to call my husband. I remember waking up no longer in the ER, but in a hospital room.

Everything in between all of those events is blurry. I know at times I was trying to talk, I could hear the words in my head, but I was unable to speak them. I know at times I knew I was in the hospital, and that my iv was burning, but I was unable to tell the nurse she missed my vein. I know at times I wanted to tell my Mom and husband how sorry I was this was happening, how tired of was of my body breaking down. How I felt, at one point, I was going to die.

Doctors came in and our over the course of the next 48 hours. The MRI showed an old stroke, but no new stroke. However other tests showed a new mini-stroke, or transient ischemic attack (TIA). Something that can be common with Lupus. Something that can mean a bigger, badder stroke to come.

It might have been my hormone patch, my lack of taking aspirin for the past few weeks, my CIDP, or any host of other ailments and reasons. We’ll probably never know.

I just know I remain scared. Confused. And angry this is happening to me. To my family. I felt like I was finally getting back on track. Like my health was finally getting better and I was closer to returning to work and normal life. Boy was I wrong.

Tomorrow I start physical therapy. An evaluation in the hospital showed the mini-stroke knocked me off-balance, and left the right side of my face drooping. So we will work to get me back on balance and each side of my face working properly.

I feel like we’re starting again from square one, and I fear another set-back. Mentally we’re all burnt out, and this was like a kick in the gut. I really hard kick in the gut.

I know I am supposed to be thankful I am alive, and I am. I really am. I felt, at one moment somewhere between the hospital room and the frantic car ride to the ER, like death was closer than it had ever been. I wasn’t scared. I just wanted peace.

Today I got in the car with my Mom and the kids to head to the store. I thought I felt well enough to help them grab a few things for lunch. But we didn’t make it out of the subdivision before I got scared, and asked to be taken back home. It was too soon.

I need to gain back my confidence. I need to gain back strength and believing I can get back to where I was. But being that close to death was beyond anything I can explain. I just want my husband, my children, my family close.

It was all I could do not to beg my husband to stay home from work this morning. And I spent the day hugging and kissing my kids. I don’t want to be apart from them again. Ever. Yet I know that with this disability I face the possibility of many more hospitalizations. Many more days getting treatment, undergoing therapy, and doing all the things I need to do to stay alive.

I will do it for my husband. I will do it for my children. They are worth every medication, every treatment session, and every single hospital stay.

Thank you for supporting my tiny family through this latest set back. And for encouraging me to keep going.

I can do it.

When you live with a chronic, incurable illness you can expect a ton of advice. Much like when I was pregnant, everyone seems to have their own opinion on how to manage any particular condition.

Bless their hearts.

Now let me start by saying I truly appreciate everyone’s concern for my well-being. So many wonderful people have offered their advice on how to handle all my ailments -from Lupus to arthritis to fibromyalgia to sjogren’s to vasculitis to neuropathy to unspecified connective tissue disorder to raynaud’s.

Many have offered up suggestions like acupuncture, special herbs, seeing a chiropractor, using certain juices, and even breathing techniques that are supposed to help relieve many of my symptoms.

I am humbled by these friends who truly wish to see me get well and do their best to research and send me their findings. To those friends, I say ‘thank you.’

Then there are those ‘friends’ I would like to, honestly, punch in the face.

The ones who call this illness my own fault for failing to be a woman of God.

You brought this on yourself as you are not a Godly female. God is good and HE sees fit to give you the disease Lupas. The punishment fit the crime and HE only give what you can bear in your burdans. Pray to the LORD that you shall be saved.,and so it shall be with HE,

Putting the horrible grammar and spelling aside (and that’s saying something coming from me) where do people get off telling me I DESERVE to suffer? That my children deserve to suffer with a Mom who is often ill, or that my husband deserves to have a wife who can’t always do all the things she would like with her family?

Then there are the ones who say they have a cure.

Mind you Lupus has no cure. Researchers, doctors, scientists all agree there is no cure and they are working very hard to find one…but there is always someone who says they know this ONE doctor no one else knows about. And wouldn’t you know it…he’s the ONLY one who knows about a CURE for Lupus.

It is very hard for people who have suffered like you and my wife and I (I used to have severe psoriasis) to hear, but autoimmune diseases are a bi-product of ingesting things that the human body was not designed to ingest. All of the foods that humans started eating after the advent of agriculture – grains, beans, potatoes, dairy, artificial ingredients – are not foods. They are slow poisons. Eliminate these slow poisons, and lupus, psoriasis, Crohn’s disease, rheumatoid arthritis, and all the other auto-immune diseases go away, completely. There is very strong scientific evidence of this

A cure? Really? Then why are we pouring millions of dollars into research some doctor has already cured? Why haven’t the millions of other Lupus patients been cured? Why isn’t this ‘cure’ being touted in every medical journal from here to the far ends of the earth? Where is this scientific evidence and why doesn’t my doctor know about it- considering he (and several other doctors I have seen) are world-renowned Lupus experts?

That is the difference with these friends I have. Some wish to help me and others wish to help me while blaming me, ultimately, for bringing this on myself. Or maybe they are not trying to help me…they are just trying to sell me something, be it a diet or God.

As if I don’t carry enough guilt with me for ten lifetimes for getting sick. As if I don’t have to repeat to myself over and over and over again-

This is not my fault. This is not my fault. This IS NOT MY FAULT.

I did not get Lupus because I didn’t pray hard enough, or fall to my knees fast enough, or because I won’t declare Jesus my Lord and Savior.

I did not get Lupus because I ate potatoes.

And you had better believe if I could cure myself of this horrible disorder I would take any pill, eat any food, say the Hail Mary a million times and hop on one foot while balancing a plate on my head while eliminating all foods that start with the letter T and all drinks that are brown.

Perhaps there needs to be a mass circulated etiquette manifesto when dealing with someone who is sick. In fact, I think I will start one. Right now:

1)Give advice when asked, and even then, choose your words carefully

2)Never blame the patient for their disease

3)Do not claim to be an expert on the patient’s illness when your only reference is your brother’s roommate’s mother’s Aunt Anna’s niece’s fourth cousin removed who once had the same thing happen to her except a little bit different

4)Do not share what you learned when Googling the patient’s illness- odds are it will scare the hell out of everyone in the room (go ahead and Google ‘lupus’…I’ll wait…yup…death death and more death…see what I mean?)

5)Never call the patient’s doctor an idiot and say ‘he doesn’t know what he’s talking about’

6)Never start a sentence with ‘But I heard on Dr. Oz…’

7)Never share information with a patient if said information came from an email forwarded to everyone in your Uncle George’s address book.

8)And never, under any circumstance, tell a patient you heard there was a CURE for an incurable disease unless you are DAMN SURE there is one. That means it’s been all over every major paper in the world, CNN, MSNBC, and yes…even Fox ‘News.’ That means millions of patients are now cured and you can have them give their testimony to Barbara Walters, Larry King, Erin Kotecki Vest and Congress. That means Katie Couric is talking about the cure as her top story on the nightly news, Anderson Cooper is in a t-shirt interviewing cured patients as they cry tears of joy.

Because anything short of all of the above is dangling life in front of their face, and then cruelly snatching it away.

9)Know in your heart, as you give a patient advice, that they are doing everything in their power to make themselves well again. They will mostly likely be thankful for your help.

10)Do not second guess a patient’s treatment regimens unless you too are a patient suffering from the same disease, or you are a doctor

What else would you add to this list? How do you handle advice given to you about your illness?

I would love to hear your answers and thoughts, because together we will punch fewer people in the face.

Bless their hearts.

It wasn’t long ago that sitting in a hotel room in DC was nearly a home away from home. Flights across the country. Meetings. Dinners. And if it wasn’t DC it was San Francisco, or New York.

I would pack my bags, hop a shuttle and not bat an eyelash to get to where I was going.

Yesterday I left Los Angeles nervous. I had all my meds, I had all my friends lined up on the other end to help. I had no idea how my first trip alone would go since being diagnosed with Lupus. Would I get sick on the plane? Would I need a doctor in DC?

I made it to DC fine, but a bit worn. I’m swollen. Edema is bad for me when I fly for some reason now. And I spent the night queasy in my hotel room, trying hard to eat despite no appetite. When you take as much medication as I do, an empty stomach can ruin your day.

I woke up this morning still swollen and still slightly queasy, but ready to head to the White House.

Oh, did I mention that’s why I’m here? I’ve been invited to attend the President’s first Twitter Town Hall. This will be my third White House visit, but my first as a sick person.

It’s a strange feeling. Knowing I will see people I haven’t seen in a long time, wondering how they will react to my swollen frame and my steroid face. Knowing the White House New Media staff will recognize me and have no idea what the hell happened to me…did she eat too many donuts playing blogger on the internet all day?

No. She took prednisone for months at a very high dose to save her life, and still isn’t back to work.

Speaking of…this is a big test. I want to return to work and normal life badly, and traveling alone is a huge step in getting me there. I need to show the doctor I can do this, and I need to be able to show myself and my husband I won’t land in the hospital on the other end of the plane ride. Or after a day of meetings. Or…well, just or.

I’m excited to be involved in a social media White House event. It makes me feel like I’m still in the game, even if I am playing from the disabled list. And I’m excited to see if I can handle this trip and return to LA for my second round of treatment with IVIG, and my continued chemotherapy. But most of all I’m nervous and anxious and a far cry from the confident and strong woman I was pre-diagnosis. My life has changed so much since the last time I was here.

But I know that woman is still in there. She’s a bit more hesitant than she used to be, and she carries a whole lot more medication…but she can still rock the West Wing with the best of them, and plans to in just a few hours.

Do you have a question for the President? You can tweet @BarackObama with your question and watch the townhall live here.

On July 11th I’m going to start my second round of treatment for Lupus. For three days, I will sit in a recliner hooked up to an IV and receive IVIG for several hours per day. The last round I received six doses. And for six days I pretty much pretended I was doing this:

One dose of IVIG takes 1,000 donors. 1,000 people need to give their plasma in order for me to get the much needed immune globulin on my end.

Blood and blood products save lives, and you can help. If you are attending BlogHer ’11 in San Diego you can sign up to donate right outside the convention center. If you are not attending, you can give in your hometown, or you can help spread the word.

Please help. Please remember your blood is good, while mine is not. Everything in my body is attacking itself. I need your good cells to fight. I need your good cells to get back to work. I need your good cells to get back to my normal life.

Be one in 1,000.

Thank you.

All my grand plans for Father’s Day were ruined by Lupus.

In fact, most of my plans as of late have been ruined by Lupus.

Everyone keeps telling me it’s not my fault. Everyone keeps telling me to stop stressing out over things I can’t control. But what ‘everyone’ does not understand is that regardless of fault and stress, I still have to handle it all. I still have to live this life that is currently shit.

I have to explain to my husband that he’ll need to be alone with the kids for the rest of Father’s Day because I need to go to the hospital. I need to worry, with an IV in my arm, if the right sunblock will be packed for camp. If I plugged in the iPad and DSi for the ride so the kids have something to do on the way. If they will be upset when they wake up and I’m not there. If everyone is starting to resent the burden they carry because I can’t ‘get it done.’

The rides back and forth to treatment for 14 days. The constant pharmacy pick ups. The constant lack of help around the house. The constant worry when morning comes and no one yet knows if it will be a ‘good’ day or a ‘bad’ day.

My family deserves so much better. My kids deserve a mother that can scooter down the street with them, my husband deserves a wife that can go on a date night. They do not deserve this.

Last night, as I laid in yet another hospital bed, I cried harder than I have cried in a while. I didn’t cry for myself. I cried for them. I want them to have a better life. I want them to have an easier life. Where no one worries about medicines and treatments and lab results or if Mommy will make it to the end of dinner before needing to leave for a doctor’s help.

I keep telling myself it’s getting better. It WILL get better. And time and time again I am disappointed in my body. Part of me wishes it would just give out already so everyone can get on with their lives and be happy. Be normal.

Part of me wants to just vow to suffer in silence and do everything a normal wife and mother would do, to hell with the consequences.

Part of me wants to demand better care, better drugs, better treatments and to never be silent when I am uncomfortable and to continue to fight as fiercely as I can.

But most of me is just exhausted and upset.

Today my doctor told me my treatments appear to be working. It is a bit early to tell, but we are headed down the right path and those once scary lab results are looking much better. But we still have a long way to go, with additional twists and turns including my growing tolerance and addiction to pain medication.

Nothing has come easy with this disorder. Nothing.

I’m not sure what’s left to relinquish, or from where I will find the strength to keep down this path…even as it appears to be leading to the light at the end of the tunnel. I have lost so, so much and I’m starting to lose faith that I can do this. I want so much better for my kids and my husband. I love them so very much that it hurts me more to see them go through this than to have a million veins collapse, a millions mornings of pain, a million more treatments and a million more tests.

I want my body back. I want my life back. I want my husband to have a normal looking wife, I want my kids to have a Mom who can be present in their lives, not fighting for her own.

Tonight I’m ripping off the bandages and tape and ekg circles so there is no evidence left of this last hospital stay. I want my husband to walk through the doors from work and at least not be reminded. I want to tuck the kids in bed without them worrying where they can or can’t touch me for fear of causing pain. I want them all to treat me like nothing is wrong, even if we all know it’s not true.

I struggle so hard to make life as normal as possible for them, that I think maybe if I can fake it, they will treat me normally in return. Of course, nothing is normal. We all can’t just pretend forever…

…but maybe, just maybe,  if we pretend hard enough and long enough, we’ll get to end of that tunnel and no one will need to fake it any longer.

The only other option is to give up. Which is not an option, no matter how horrible the day or how awful the guilt.

I don’t wish Lupus on my worst enemy.

This is what Lupus treatment does to your body.

Warning: graphic photos

Both of my inner arms look like this- and it stretches across my chest and onto my breasts:

These are my inner thighs and legs. I don’t think I need to say much more:

You can also find these patterns across my sides, my back, my ass.

Treatment that is protecting my organs has made it hard to get in a bathingsuit and face the world. The rapid, steroid, weight gain. The horrible marks. The bruises.

Never let it be said I’m stoppable.

Alright, so it’s been 10 days since I’ve posted…but to be fair, it’s hard to blog with an iv in your hand and immune globulin getting pumped into your body.

I won’t lie, it has sucked. Hours upon hours sitting in a recliner in my doctor’s office, day after day, hooked to an iv and hoping beyond hope this works.

I was supposed to wake up feeling better today, but instead woke up feeling worse. I was ordered to come back Monday for an extra day of treatment, a re-calculation due to my rapid, steroid-induced, weight gain. Now, we are told, I should wake up tomorrow feeling improved.

Here’s to a new dawn. I will go to bed tonight wishing and willing it to be true.

Every three weeks for the rest of my life I’m going to sit down in a recliner for three days in a row and have good blood pumped into my sick body.

It’s called IVIG and it’s going to help me live a normal life. That’s the plan anyway.

With recent tornadoes and tragedies, not to mention every day accidents like car crashes…it got me to thinking just how important blood donations can be. You see, that IVIG stuff up there is pretty much good blood. Good plasma. Good immunoglobulin so I can take my kids to school, plant flowers in my garden, cook dinner, and kiss my husband. It means I can fight with conservatives and write blog posts and take my kids to the park.

But I have to count on other people in order to get the treatment I need. I need good healthy people like you to donate blood. Donate plasma. Donate the healthy red stuff you have flowing through you that I lack.

I know many of you have been asking how you can help. This is an easy way to help me and millions of others who may need blood.

I even made it easy for you. Click here to find out where you can donate near you and look… you can even make an appointment!

Thank you.