Sunday, May 29, 2011

I don't do mornings

Mornings with Lupus are a wierd time.  #1 they are not literal mornings.. I mean, 11AM is barely morning, but it is for me at least 2 days per week.  A lot of times, I stay up late sometimes because the later it is in the day, the better I feel.  When I wake up I make my favorite coffee - thanks Wes Bennett for getting me hooked on Ugly Mug-- eat some cereal, and lay on the couch for awhile just trying to wipe the fog from my brain. I know I should get up and move around, but I'm in pain when I first wake up.  It's a double edged sword.  Wake up by moving and showering, but cause more pain in the process. Rawwr.. what do I do?
my baby Holly - professional growler

I'm beginning to think that maybe it's the medicines I have to take at night.  Now that I'm typing this it makes me want to rearrange my medicine schedule. If you read my first post, you know that I take enough medicine to successfully put an elephant in a deep sleep! So here we go: 
  • Flexeril , been on this since 2007 and it was prescribed to take at bedtime. This medicine keeps my muscles from spasming the next day and it helps you get REM sleep (rapid eye movement sleep is the deepest form of sleep that people with Fibromyalgia and Lupus don't usually get. Controls pain response, memory function, and nervous system development)
  • Neurontin , been on since 2010, this is to keep my legs from hurting me at night and it helps with nerve pain.  It's an anti-seizure medicine that aids in nerve pain reduction.
  • Lexapro to replenish my serotonin that I lose from the lack of REM sleep I miss even with the Flexeril.  This one helps me stay remotely sane!
  • Ambien so I can fall asleep and stay that way. Surprisingly this one doesn't give me a hangover, which I guess is the reason that doctors prescribe it so much. I resisted taking a sleeping pill for a very long time, but there's just nothing like a good nights sleep.
 I don't know how to move it around so my mornings aren't like a painful hangover.  My doctors have been tweaking this combo for a year and they seemed pleased with it.  I am not sure I am.  I try to get going, but it's a bit like trying to run in a swimming pool.  It's just very difficult and I have a lot of pain that radiates through my body for the first two hours that I'm awake no matter how early or late I wake up.  When I finally do get going, I'm okay.  Some days I just give up though.  I get tired of fighting it.  This is probably the main reason why I cannot work, because I'm so tired all the time.  If you have Lupus and know how to prevent this, comment me or email me! The sun is shining, the birds are chirping, and I feel like I could sleep all day and all night and have no desire to leave the couch. I want that to change!

Around 2 I peeled myself off of the couch and tried to get moving.  Our floors are light colored laminate and I love them, but they are very difficult to keep clean.  I swept the floors and then ate some lunch. 
Hubby got home from work and I kept dropping things with my right hand so I had to sit down.  I guess I just have to pace myself.  My right hand was just not functioning for some reason! It's okay now, but I had to come in and make myself some Cinnamon, Mint, and Rose Tea.  I just started drinking this and there is something about it that makes you feel so calm and serene.  I love it and am addicted! I'm glad it's helping because we have plans with friends tonight and I don't want to have to sit in time-out here at home.  It's just dinner, but still you wouldn't believe the hassle unless you're a Lupie.  Have a good holiday weekend!


Zach and I are watching the movie Fun with Dick and Jane.  It's hysterical because we've been there.  We are actually still there!  Where is "there" you ask? It's a little place called flat broke, yall!
Ok.. back to the movie... Copy and paste moment coming up...
"Dick (Jim Carrey) and Jane (Téa Leoni) are in love and living the American dream -- until one day it becomes an American nightmare.
When the company Dick works for becomes involved in an Enron-like scandal and he is confronted with the prospect of losing everything, Dick and Jane are forced to bag, borrow and steal to get it all back."

This part is where Dick finally has a meltdown...

Too funny, right? I had a meldown like this on Friday! I wasn't on a bar or making fun of someone's awful toupe', but it was definitely not my finest moment. I get sick of always having to work so hard just to stay well and not go broke in the process!

Thursday, May 19, 2011

Shopping with LuLu

Hello my name is Whitney and I'm a shop-a-holic.  The truth is, I'm not anymore! Before stupid Lupus I would shop til I dropped.  Now if I shop, I am SURE to drop a lot sooner. Shopping hurts. Yes, I'm serious..physically hurts.  Exhibit A:
As you can see, within about 15 mintues my feet retain massive amounts of heat, swell up, and begin to resemble those of an Oompa Loompa! I won't even get into the sweating.  I sweat like crazy sometimes and then other times I'm fine. I know all of this is gross, but it's the truth! I promised to be open and I think this is pretty darn open.
Here's my foot now that I'm home and comfy on the couch. I take pictures of my symptoms for my doctor (because my body can't do these tricks on command), especially this particular one, and no doctors have much to say about it.  I'm guessing circulation issues or APS (Antiphospholipid Syndrome).  Most people with Lupus have APS Click for info on APS from the Mayo Clinic website - safe site.  I have it and sometmes aspirin makes it better.  Other times... I tough it out and prop my feet up when I get home.
Zach and I really enjoyed one another's company tonight.  We walked and talked and tried on clothes.  He wanted some jeans but never bought a pair.  He hates spending money on himself and I cannot talk him into it.  I might go back and get the jeans he liked so much.  He works so hard & deserves them! I tried on several dresses to possibly wear to a couples wedding shower this weekend.  We got the couple -------- (deleted until after shower.. just in case) at Macy's.  Very nice.  Now that I'm home I will go wash my own face with my (deleted until after shower) and get some rest. :)  Goodnight my Lupies. ((hugs))

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!

Sunday, May 15, 2011

Are you afraid of the big bad wolf? Me too.

I decided to start a blog about my life as a 28 year old woman living with Lupus.  Some people don't even know what Lupus is.  I knew very little before I was diagnosed. For that reason, I understand why people don't know what it is and how it affects me ... and get this...a whopping 1.5 million people in the US.
Since this is my first post I think I will define this disease and how it applies to me.  Don't worry, this blog isn't about statistics or diagnostics.
What is it?
Lupus is like a controlling boyfriend or an overprotective parent.  It protects you too much..
Something happens in your body's chemistry that causes its immune system to attack the good cells, not just invaders (i.e. bacteria, viruses, germs) Your body is constantly producing bright and shiny new cells and so Lupus is constantly fighting that. What a stupid thing to do! I know! 
So, how does this affect the person with Lupus?  I will give you my top 3 Lupus symptoms.  These are the ones that greatly affect the way I live.
The body's process of destroying it's own cells makes the person with Lupus very tired all the time, Red Bull and Starbucks be damned.  When I say tired I don't mean,"I just ran five miles," I mean.. "I'm too tired to get up and go to the bathroom." My body is constantly fighting itself  and leaving me with no peace or energy.
It also creates pain.  I'm in pain all day and all night and I don't ever get a break from it unless I'm medicated.  Even with pain medication, the pain is not gone, it's merely tolerable. As I'm typing this right now, I'm extremely uncomfortable. I take medicines that would put any normal person into a pseudo-coma, but for me it's normal.  My knees are a major source of pain for me..
Last, but not least, the sun causes the pain and fatigue to intensify.  I can wear a high SPF (I keep a 50 in my purse), but it won't stop the inevitable.  My skin gets red within one minute of me walking outdoors and then the craziness starts.  Fatigue, pain, and red skin: Could I get any sexier?! Why yes, I can.  The rest of the day even when I go inside I start getting red splotches on my skin.  If I wear SPF I don't get a sunburn, there are just areas of my skin that start burning and by the time I look down they are fire red. It can go away after 10 minutes or it could burn like that all night. There is no good rhyme or reason.

Okay ... enough of that!!
With anything, you can't understand it until you live it.  So, if you read my blog.. you're living it with me.  For so long I have kept my disease private and not invited too many people into my world for fear of judgement and pity. Then I would wonder why I felt so misunderstood and at times even lonely. Pushing people away so they won't see you at your worst is cowardly and I'm done with it.  This is my blog and if you don't like it.. don't read it.  Simple as that.  I hope you will though.  My reason for doing this is not so I can spout out all my feelings and have people tell me how valid they are.  My reason is that I have spent painful days and sleepless nights online searching for what it's like to be young and live with Lupus.  I didn't find it and it was discouraging to me.  I hope someone finds this and can see that the way they are feeling isn't uncommon.  To do this, I will include writing, pictures, and video! You aren't alone and I hope you will connect with me! That being said, welcome to my world.  I feel like I'm decent at making the best out of a bad situation, but I'm wanting to get better and stand up for Lupus sufferers by just making people aware. I might moan and cry and whine at times.. but I still will try to make a person laugh in the end.

By the way, Lupus is the Latin word for Wolf  .. rawwwr