Monday, May 16, 2011

Second Post Ever!

If this is the first time you're reading my blog then I encourage you to read my first post of the blog.  You can click on it to the right of the page under Popular Posts.. it's called "Are you Afraid of the Big Bad Wolf? Me too."
Or you can scroll down and read it below this full post. It explains the reason for this blog and a little about my journey. Welcome!!! :)

Today has been a wild day! Literally.. like a barnyard.  Mainly because I awoke in the middle of the night to something squealing outside.  Upon inspection, my best friend and I discovered a chicken, a baby rooster, a duck, two rabbits, and 5 pomeranians in the backyard of my neighbor.  I knew something had been going on because of the strange noises, but I did NOT expect THAT!!!  I just don't think it's fair that all of it is in a makeshift chicken coop right up against my fence.  My bedroom window is less than 50 feet away from it. There's also a kiddie pool that looks like it's filled with mud.  The animals are not kept in good conditions, which hurts my heart. I spoke with someone in my city ordinance office and since I live in a very small city I think he has already been to my neighbor's house or he will be there tomorrow.  Fingers crossed!! If not I will get an early start tomorrow morning thanks to a baby rooster with an obvious pituitary gland malformation. (future underground cockfighter?)
I have had reservations about sounding like a complainer or a baby in this blog... but then I have to remind myself it's truly for the person who might have Lupus or is going through what I went through for years. Also I hope that if someone who has Lupus reads this that they will not feel so alone.  It's still new for me to tell these things to a lot of people and I'm scared; but I'm going to do it!  So I'm still typing and I'm still going to be putting all my symptoms here! No worries.  So here we go!!
My Lupus has been quite annoying the past 24hrs. Back pain is in full force, I am so tired from so little exhertion. The most annoying thing is that my face is on fire today and it was a little last night.  I'm not sure what's going on with it.  I'm guessing it's from inflammation.  So to stop that from happening I have to take some Prednisone (corticosteroid).  I am so tired of Prednisone.  My heart is beating fast from it and I just feel so tense (Roid Rage?!) My stomach gets a little messed up too so I had to take care of that. (won't go into that!)
It get's old having to put on a ton of sunscreen to step outside for one minute and take pictures of your neighbor's chicken coop! Even if I wear a hat and sunscreen I get this crap. My face still gets red and it's hot all over. It feels like a terrible sunburn and then it will go away for a few hours.  That is what is so bizarre to me.  The red spot below goes away after like 2 hrs and my skin looks normal. Right now it's easing up since I took the Prednisone, but now I've traded a red face for the Prednisone side-effects.  The red spot is almost gone and my face is borderline pale.  I don't feel good at all today, honestly.  Flu-like symptoms and I can tell Fibro is going strong (I have Fibromyalgia too-- as do most peeps who have Lupus) As you know, I said I would include pictures and I am.  This is hard for me to do because I'm not the type to let people see me without ANY makeup on, but I will do it for YOU.
Yeah it's not sunburn, it's just hot and annoying

See how the skin around it looks normal ,but the area itself is really well defined and red?  I wish I knew how to deal with this, but I don't.  If you do, leave me a comment! I usually either get a steroid cream and put it on there and hope it calms it down or I take aspirin since it's an NSAID.  I've had moderate success with both. Well, actually I'd say mild success.  My house is an igloo because of it! Zach (husband) has adapted qutie well to the sub-zero temps, though.  I would L-O-V-E for someone to help me make this go away! On my other posts you can see I get it on my arm too. 
One thing I didn't really touch on in my first post is a symptom that embarrases me quite a bit.  I'm sure that we all lose things and aren't organized 100% of the time, but I have a very bad memory now.  At the beginning of the week I will put my meds into a little container (yes the ones with the days of the week on it that you've probably seen in your grandmother's purse. *eye roll* I know..) and last night I couldn't remember where one of my medications was.  I tore the house up and down looking for it and cursing myself the whole time.  I can't remember things at all.  I will stop in the middle of talking and just have to come back to it later.  I did that to my dad the other night and felt so stupid.  I believe the memory and cognitive impairments I have are from a medicine that I was prescribed before I was diagnosed with Lupus.  It's called Enbrel and it was an injection I'd give myself once/week.  I'm sure it's lovely for most people with RA or AS, but it ate up my brain.  Literally I woke up unable to feel my face, walk straight, talk normally.. and it scared the crap out of me.  I won't go into full detail because that would probably crash the bandwidth of this site if I did, but let's just say that the lesions have healed.  I was told they will always be there though, and can come back at any time.  Every time I forget mid sentence what I was saying or I tear my house apart looking for something I'm terrified that it's getting worse.  I was misdiagnosed and treated for a disease that I didn't have.  This reason alone should make me want to scream from the mountaintops that Lupus needs to be pushed into the forefront when it comes to physicians being educated and research development.  I can't get those 6 months back.  When the feeling started coming back in my face it was excruciating.  I was so angry and I wanted to do something about it, but I just had to let it go. That doctor is now retired. :)
  Ok, well I'm done for now -- getting sleepy and might take advantage of the quiet and take a nap. Of course as I type that I hear a chicken squawk....ahhh!


4 comments:

Maddy said...

I say its time for some fried chicken and some orange duck and maybe some braised rabbit! :p

Lee Ann said...

Hi Whitney!

This is Lee Ann Newman. We have a mutual friend, Emily Moore. I have read your recent post and my heart goes out to you. I too am taking Prednizone 10 mg (I venture to quess you are probably on a much higher dosage) for Lupus along with Hydroxychloroquine. I wanted to let you know some suppliments I take that seem to help me....Fish Oil and Calcium with Vitamin D...My Rheumatologist is very big on the vitamin D. I also had to go to a Hematologist (for low white blood cells) for awhile and he recommended me taking a prenatal vitamin. He said "whether I was planning on getting pregnant or not, he recommended all women of child bearing age take prenatal vitamins" I hope that helps. I will also say a prayer for you :)

Wendy said...

I love your blog...keep it up!!!
Love you
Wendy

Whit said...

Hey Le Ann! Yes, I take Vitamin D 1000 iui's and magnesium along with it for mag deficiency. I could tell after a week of taking the Vitamin D that my levels were very low. Even though the doc told me they were low I didn't know how much the supplement would change the way I felt until I started it. That was about a year ago after I went to Mayo Clinic. I felt less burning in my muscles and a little more energy.

Thank you all for reading!! <3 LOVE U!