Life in the Autoimmune Lane

Posted By Michelle on July 2, 2009

I am so glad I saw something about this on Facebook.  Here is an excerpt from the bio on Rob Thomas’ website:

The album’s first single, the kaleidoscopic “Her Diamonds,” is the most personal song Thomas has yet committed to disc. Rob’s wife Marisol is courageously battling an autoimmune disease, and “Her Diamonds” was written “about a couple dealing with that on a day-to-day basis,” explains Thomas. “There’s an incredible amount of sadness that comes with something like that. There are moments where I think I flirted with a thinner personal line than I’ve ever done before, but, really, I’m writing a song about how people deal with hard times, and that hard time is universal, that hard time can be anything.”

That gift of turning the personal into the universal has long been a hallmark of Rob’s work. “If I can take a specific moment in my life and write about how that moment makes me feel – not about the moment, but the way the moment makes me feel, all of a sudden I’m in a territory where a lot of people can understand that. A lot of people understand that feeling; they have other things in their life that make them feel that way. If I write ‘3am’ about my mother dealing with cancer, that’s a very specific moment, but if I write about how that made me feel, then it opens up and it becomes a universal moment.”

I went to the site and watched the video “Her Diamonds“.  Wow.  Writing a song about his wife’s illness and how it feels is really intimate and I’m so glad he did it.  It opens up conversation about autoimmune disease to his fans.  What is it?  Which on does she have? etc.  It must have been hard to open up their personal life and talk about his wife’s battle with autoimmune disease and how it affects both of them.  I wonder if she wanted him to, to help the cause.  I wish I could say thank you to him personally, I can’t so I will just say it here.  Thank you, from the bottom of my heart-thank you.  My husband and I watched your video and were both so touched.  You nailed it right on the head.

I’ve always said if more famous people would speak about autoimmune disease, the population would be soon asking questions about autoimmunity.  We really need more press and exposure.  A lot of you know that there have been no new meds for lupus in 50 years.  That’s just inexcusable.  That’s just one example of how autoimmune diseases are at the bottom of the barrel when it comes to exposure, research dollars, and just plain understanding.  How many people live with the pain and fear of their body’s attack on their body.  Even that sentence doesn’t seem to make sense.  None of it does.  It’s so random.

Done, off my soapbox now.  This is a video of Rob Thomas performing this song Her Diamonds live on the Ellen Show.  To see the video of the song, you can go to his website at www.robthomasmusic.com and click on the videos tab, or just click here. 

*******UPDATE*******I added his video, Her Diamonds to my vodpod on the left side of the blog.  It is the first video in the lupus vids.  Have fun!!  Even though I want everyone to hear this song and talk about it, the song kicks ass. It doesn’t need a small town blogger trying to sell it.  Enjoy!

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Category: Advocacy, Autoimmunity, Life, videos | No Comments »
Tags: Advocacy, artist, Autoimmune blog, Autoimmune disease, Autoimmunity, Chronic Illness Blog, Ellen Show, Facebook, Health, Her Diamonds, Matchbox 20, music, Rob Thomas, song, thank you so much!!!

Posted By Michelle on July 1, 2009

I have been gone for a while now.  That’s obvious, huh? :)  Since my last post I have been very sick.  I’ve been in and out of the hospital.–  I got food poisoning a couple days after I  stopped taking a diuretic to remove all the water from my body.  I blew up like a balloon-it was so bizarre!  My skin was stretched so tight from being completely filled with water, that I could only bend my legs so far or they would rip.  Wow, what a pretty mental image…So anyway, I had just stopped the medication when I ate the rotten hamburger, and while taking it you are supposed to get your potassium levels checked each week.  The first week I went in and my doc had been called away on an emergency.  So I asked his assistant if I should just go to the lab and get my blood draw and she said “Nah, he’ll see you next week.”  I left the building feeling a bit weird.  I hate it when I feel that I’m not asserting myself in situations that call for it.  When you are chronically ill, you have to be your own champion.  The people at the doc’s office have no clue what it’s like to be you.  They don’t feel your pain, they don’t lay in bed at night and pray for relief.  I could go on and on… The following week I go in to see him and I stopped taking the med 2 days before my appointment.  At the end of my appointment he is ushering me to the door and i ask about the blood test again to check my potassium levels.  He says, nope.  You are not taking it anymore.  So I leave feeling weird.  He is the one who told me in the beginning that once I started taking this med it was very important to check my levels.  Could be dangerous blah blah blah.

On the way home from the doc’s we go through a drive through because I hadn’t eaten before we left.  Oh My Gawd.  If I could turn back time (go Cher) I NEVER, EVER, would have eaten that damn dollar burger.  That evening I was popping rolaids and going uuuunnnnhhh.  Or something like that.  So I finally tell the Big C that I don’t feel good, and I mean, not good at all.  I end up running up the stairs, and I am in the bathroom for like, forever.  But, something changes.  Suddenly the pain is so great that I start yelling for C, somethings wrong.  And he’s like, um yah, you’re in there crapping your brains out.  Your sick.  And I say no, call 911.  He is standing in the doorway and I’m on the commode and I’m screaming.  Within seconds I am covered in so much sweat that I look like I fell in.  C is trying to talk me out of my silliness, calling 911 for a major evacuation?  But he must have seen something in my face or the tone of my voice or the way I kept saying, call 911, call 911…after that I was out.  They came and got me off of the toilet, got me in a transport chair,  that I ruined within minutes I was told, and to the ER.  I don’t remember anything about the ER except for one moment that I will spare you from and when someone said “why is she so out of it” and someone yelling at me for my arm.  I couldn’t move it.  Then there was pain.  It felt like someone was shoving a metal rod up my arm and I was trying to get it out but they were holding me back.  This whole time I didn’t see anything.  I had my eyes closed C said.

Turns out my potassium level was dangerously low.  That’s why I was so unresponsive.  I was heading out.  So, to wrap up this l o n g story with possibly TMI, my doc never checked my potassium levels after chemically ridding my body off excess water.  Then, when I ate the death burger, I was already low on potassium and dehydrated.  I’m lucky I’m here right now.  After hearing about the whole experience in the ER, I was mortified, so embarrassed, sure I was going to run into any one of the staff in the grocery store and I would never know it.  But they will see me and go, ‘oh my, it’s the poo queen.’  It’s OK.  C told me that as soon as the bloodwork came back and they saw what was wrong, they were more sympathetic.  I guess it probably would have ruined my night too if I was working the night shift and in came me.  Maybe I’ll send them a card.  I don’t know if I can find a ‘I’m sorry for ruining your scrubs’ card.  Big C told me that when the nurse wheeled me to the front door I apologized for making it such a crappy night for him.  Always the comedian…  I think I’ll just leave it at that and wear shades when I go out.

Until next time, hopefully better times… 

Image: FreeDigitalPhotos.net

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Category: Health, Life | 4 Comments »
Tags: autoimmune, Autoimmune blog, Chronic Illness Blog, Dehydration, Diuretic, emergency illness, ER, Food poisoning, low potassium levels, potassium, worst day ever

Posted By Michelle on May 5, 2009

I stopped by my You Tube account the other day and I’m glad I did.  I got a message from Chandra, (theleepchatchannel), telling me about her new campaign for awareness.  It’s called LEEP for Lupus ™.  I really liked her video that described what lupus was.  If you’d never heard of lupus, her video is a great explanation of it.  I really liked the video and I know a couple of people that would benefit by watching this video.  Sometimes it takes hearing about it from another source for people in your life to ‘get it’.  Check it out!

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Category: Advocacy, Autoimmunity, Health, videos | 7 Comments »
Tags: autoimmune, Autoimmune blog, Chronic illness, Chronic Illness Blog, chronic pain, connective tissue disorders, discoid lupus, find a cure!, Health, immune system, LEEP for Lupus™, lupus, lupus awareness, plaquenil, prednisone, SLE, Systemic lupus erythematosus, video

Posted By Michelle on April 29, 2009

It’s safe to say I can’t stand depression.  I mean who does?  It sucks, sucks, sucks.  I know that it is a chemical tweak in my head, I know that things are better than they seem, I know that I won’t feel like this forever, but even with all that knowledge-it doesn’t hurt any less.

I have people who depend on me.  How extremely selfish of me to focus so much on me.  I need to pull up my bootstraps, as they say.  Or something like that…

How do people do it, I want to know.  It’s been months, and I do mean months of joints pain, muscles that won’t relax, muscle pain/burning and weakness, rashes all over my body, feeling like there is sludge or lead in my veins, so heavy, heavy how am I going to make it through the day again?  I ask God to help me.  Please help me.  And He does, sometimes.  Other times I’m guessing it’s something I need to figure out on my own.

Sometimes I feel like screaming at everyone around me (that would be family, who always has my back) YOU TRY AND DO THIS FOR 3 F*@#%ING YEARS WITH VERY LITTLE ‘DOWN TIME’ AND SEE HOW ‘NORMAL’ OR ‘YOURSELF’ YOU SEEM.  IT’S SO HARD TO BE IN PAIN/FATIGUE/SICK FEELING LIKE POISON OR SLUDGE RUNNING THROUGH YOUR VEINS/COMA SLEEPING/BURNING AND SO ON AND SO ON…  I know it’s hard on them too though.  It must suck to live with someone who is constantly in some form of pain or sickness.  It has to be tiring, and not very fun giving giving giving.  I hear this a lot “oh wait, why am I complaining to you when look at all you have to go through”.  No.  I WANT people to be able to vent to me.  I want my husband to tell me all about his shitty day and not feel guilty about doing it.  But if you see the bold print above, I must be throwing mixed messages out with my body language and mood.  I suck.  I haven’t ever said those words, it’s just pops up in my selfish little mind sometimes.  Wow, typing this out is cheaper than therapy!  Good thing, because the medical bills have drained us, we are broke.

The Big C tells me that it won’t always be this way and I wish I could believe him.  I tell him “I know” and give him a hug because he needs to hold on to that and believe it so he can keep on going.  This disease has really hurt the man that I love. He can’t stand to see me when I’m writhing in pain and there’s nothing he can do to help me.  At least, that’s what he thinks.  Just being there and holding my hand is helping me, I tell him that.  But he wants to ‘fix it’.  It drives him crazy.  If the shoe were on the other foot, I would feel the same way.  Helpless.  It tears him up and it hurts to see him that way.  Then I feel guilty.  When I think about it, this illness affects us in so many different ways, and offshoots of ways, a lot more complex than I thought.

My body has done some pretty awful and unbelievably painful things to me and each time I would think, it couldn’t get any worse, I have never felt such awful pain, suicide pain is how I heard someone describe it and that hits the nail right on the head. When your body is in pain in multiple places for extended periods of time, the kind of pain that’s a 10 on the pain scale, you’re in the hospital and they are slamming your IV with morphine or fentanyl or demerol because your blood pressure is through the roof due to pain, and even though you’re floating with so much narcotics running through your veins, there it is.  You can still feel it.  It’s like it’s a mocking you-I’m here to stay.  That’s suicide pain.  How do you stay positive???  How do you get up in the morning and hide the pain face from your kids??  How do you stay happy???  I try so hard, but I’m in a place now where I’m failing.  I’ve been there in that moment so many times, I NEVER would have guessed that my life would be like this.   I just really want/need one of those days where I wake up and feel like the old Chelle.  It’s amazing how much that gives to me just having a day, or even a few hours of feeling normal, it keeps me going for weeks.  Then I think, I WILL go into remission.  And, sometimes I just need to be reminded what normal feels like so that I can start being positive and work towards that.

The Bean is eating her cereal, late, and she is smiling and singing Twinkle Twinkle, in her own way which is totally amazing.  Everything falls back into place now.  She is my reason.  For everything.  Tomorrow will be a better day.

Special thanks to JJohn @ Flickr for the most beautiful flowers

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Category: Health, Life, mental health | No Comments »
Tags: Autoimmune blog, Autoimmune disease, Chronic Illness Blog, chronic pain, depression, Health, pain, suicide pain

Posted By Michelle on April 18, 2009

There is so much going on with my body I’m just spinning.  My muscles from the waist down go into lockdown mode anytime I lay down.  My superfun pittingedema (say it fast 3 times-it sounds like a Mexican dish) comes and goes, weeeee!  And, the lump that is in the middle of my neck.  Oh man.  We thought it was the beginning of a goiter.  That’s one of the side effects of the new medication that I’m taking.  I was sooo worried that I was going to have a Seinfeld size goiter.  Did you see that episode where Elaine is supposed to be volunteering, helping this old woman and the woman has a goiter the size of a football and she can’t look at her??  Yep.  I feel like it’s that big.  Well, I went to see my PCP.  He examines me.  He feels the lump.  He says, “Uh huh.  It’s fat.”  And I’m like, are you f-ing kidding me?  And he says no, I’m not f-ing kidding you.  Except we both say the f word.  Me because I’m in shock.  I CANT have fatneck!!!!  And him, I think so as to be cool, and be on my side in case I go batshit and start freaking out.  I did a double take in the middle of my ranting when I heard him say the f word.  Doctors don’t do that?  Anyways, I am positive that my stomach is the size of a Thanksgiving turkey because of ascites.  After my legs going tree trunk on me because of edema, I read a ton on it and you can get fluid in your abdominal cavity.  The biggest percentage of this happening is from liver failure, which he is testing me for, but occasionally people with lupus can get it.  He said it was ’strange’ for me to put on 50 pounds in 2 and a half months.  He is also testing for Cushing’s syndrome. I started reading on that and it sounded too much like me so I stopped for a while.  I’ll read more on that later….  Yeah!  I’m scared.  I feel like I’m just going to keep getting bigger and bigger until I’m floating up to the ceiling…I know I get totally irrational.  But my stomach has never, e v e r been this large and I’ve had 2 kids.  I look ridiculous.  I don’t know what ascites or Cushing’s would mean for me.  I hope and pray my liver is ok.  I have been on steriods for too damn long with this disease.  I don’t know, I’m a wreck.  I think ice cream and a nap with help…

Until next time~Michelle~

~Check out the monthly animation I have on the bottom left side of the page.  It took forever to get the shot where you can see the trees through the growth on the branch.  When I had to downsize it to fit it on the blog, it makes it harder to see.  Trust me, it looks really cool when the shot is larger.~

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Category: Autoimmunity, Health, Life | 4 Comments »
Tags: ascites, Autoimmune disease, autoimmunity blog, Chronic Illness Blog, chronic pain, cortisol, Cushing's syndrome, edema, thyroid, unexplained weight gain