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Month: April 2009

I’ll have a zoloft sandwich, please

I’ll have a zoloft sandwich, please

Day 275/365: The Stand
Image by ~jjjohn~ via Flickr

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

I’m Large and in Charge or Duck,Thar She Blows!

I’m Large and in Charge or Duck,Thar She Blows!

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.~

Easter naps, fat legs, and Bowie

Easter naps, fat legs, and Bowie

.: Easter Eggies :.
Image by Warm ‘n Fuzzy via Flickr

I spent this Easter in bed, dozing off and on with the laptop sliding off of my legs every now and then.  Not my ideal Easter.  The Big C cooked a delicious ham with all the fixins- and I slept.  The kids had an egg hunt, and I slept through it.  A few of my grandkids got overly boisterous and got time out, I slept through it… lol.

I’m so tired of being sick and tired.  And yes, I know that expression is tired, but it’s so freakin true. I haven’t been around much because I’m afraid to just blog about negative stuff, or sound like I’m whining.  Each day I think about a post and I end up not doing it either because I am too sick, or too depressed.  I refuse to let that get the best of me!!  So every once in a while there will be a post with a lot of whining and bitching…no big deal, right?

Here I go…

Read More Read More

The ONLY time I’ve ever liked the song Doe Re Mi

The ONLY time I’ve ever liked the song Doe Re Mi

So I’m laying flat on my back hiding from the mob in the house (kids, grandkids, the works) and I decided to go through my bookmarks and get rid of all the crap that I don’t use, have never looked at, and if there’s time before morning (ha) to re-organize them.  But of course, I got sidetracked and logged in to my blogrover and started going through the blogs.  I quickly crossed out all of the blogs that I knew I would never read, then started going throught the ones I wasn’t familiar with.  When I opened up Smart Mobs the first thing that caught my eye was this video.  I remember seeing one like this a while back but the travelers seemed more pissed at having chaos in their way and slowing down their travel than these folks do.  Have a look

New Ad Campaign for Lupus Awareness!

New Ad Campaign for Lupus Awareness!

The seal of the United States Department of He...
Image via Wikipedia

Hey everyone, I’ve been ‘offline’ for quite a while now.  I got hit by a flare that overpowered me, physically and mentally.  I’ll be posting about all of that fun stuff later.  First I wanted to get the word out about this exciting new campaign!

Are there any America’s Next Top Model’s fans out there?  I was hooked on the first couple of seasons.  Yes, I am a reality show junkie.  Well, Mercedes Yvette is the spokesperson for the LFA (she suffers from lupus) and was also a contestant on ANTM in cycle 2.  I always wondered why they called them cycles instead of seasons…must be a modeling thing, lol.  In Washington DC yesterday Mercedes (representing the LFA), the National Ad Campaign and The U.S. Department of Health and Human Services’ (HHS) Office on Women’s Health launched a new national lupus public awareness campaign.  Wee hoooo!  I get excited over this stuff folks!

The new campaign is setting out to help the public understand the disease, know about early warning signs for people at risk for the disease so that they can seek early treatment.  I am so excited about this. With the way things are progressing, I hope that soon everyone in this country knows what lupus is, does, and can do.

****Here’s a link to the campaign,http://www.couldihavelupus.gov/, check it out!

Until next time

Michelle

**** sorry, I posted the wrong web address earlier, I have it fixed…now go check it out!  🙂

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