Thursday, January 30, 2014

Lupus and Lies by: Iris Carden

Lupus and Lies

Your friend has lupus.  You can see she's in pain and you say, "Are you OK?"

She says: "I'm fine."

Why is she lying to you? Why is she minimizing what's going on? Doesn't she trust you?

I know why I do it.  I asked on social media, and found that a number of other lupies have similar reasons to mine.

We do it for ourselves, because:

  • we don't want to always be talking about lupus.  It never goes away, but we still want to try to stop it from taking over our entire lives.
  • sometimes it actually feels worse when we acknowledge it. 
  • we just want to do and say "normal" things.
  • because if we start to talk about it maybe we'll just never stop and we'll be talking about pain, fatigue, memory loss, confusion, rashes, fear, drugs and all the rest of it forever.
  • because sometimes what's happening is something that we really can only talk about with someone who's been there (which is where lupus support groups are amazing.)
  • because sometimes we feel like being with someone and not talking about lupus is the only time we wake up from the nightmare that we're living in.
  • as one lovely lupie said in answer to my question; "I am afraid I will becomelupus."
  • because if we admit we're in agony, you will say "well, let's go home", when what we really desperately want and need to do is stay out and have a little bit of fun (and yes, we know we'll pay for it later, sometimes it's worth the cost.)
  • we don't want to draw attention to ourselves.
  • we don't want to be the person who's always complaining.

We do it for you because:
  • we feel like all we ever do is complain to you. Sometimes, we want to be there for you, not have our friends and family feel like they always have to be our carers.
  • it's bad enough that we feel bad, making you feel bad about it won't make it any better.
  • because we're just so sick and tired of lupus that we're sure you must be too.

We do it to avoid (I have to stress, that I don't have much of this at all - very few people have judged me badly simply for being sick, I'm working on other lupies' experiences here):

  • being labelled as a hypochondriac, or told we're faking it.
  • being rejected.
  • being condemned by people who just can't understand how we can be well one day and horribly sick the next.
  • losing friends and being abandoned.
  • getting stuck in the "but it's not like it's anything serious like cancer, get over it" conversations that leave us trying to explain/justify having a chronic, life-threatening, incurable disease.
  • unsolicited, uninformed, and incredibly unhelpful advice.
  • people not believing in the symptoms they can't see.

When we say: "I'm fine" or "I'm OK", it usually means something like "I don't want how I'm feeling to be an issue right now, let's talk about something else." I know it sounds like we're talking in code... but really all language is a kind of code anyway.

I don't know about other lupies' family and friends, but mine have learned to decipher much of my code anyway.  For example, just about everyone I spend time with knows that when I say "Let's have a coffee", it actually means, "I'm exhausted. Coffee is an excuse to sit down while I recover, without admitting there's anything wrong."


Disclaimer: This post was written by Iris on the Blog "Sometimes it is Lupus"
http://www.sometimesitislupus.com

Tuesday, January 28, 2014

Pinspiration

Well, I know I keep saying this, but I am back......again!!!! I have been so busy with this and that, that I haven't had much time to sit, much less think about what I am going to blog about.

So, today I will begin with this......the windchill here is 3. No, I don't live up North, I live in the South where it is suppose to be WARM!!!!!! This is by far the coldest winter that I can remember, and with the cold comes numbness......everywhere. My fingers and hands stay cold and numb a good part of the day, if not all day. I would love to wear fleece leggings, oversized monogrammed sweatshirts, and Ugg boots every single day, but I simply cannot do that. It is not against dress code or anything, I just don't feel put together. Call me crazy, but that is the way I am built. I love my clothes, I love dressing up, and quite frankly, it make me feel better. It gives me a sense a pride and well being. Sometimes, it gets my mind off of how bad I am hurting, or how cold it is. So, get up, get dressed, and see if it doesn't make you feel better.  With that being said, here is my Pinspiration of the day.

Stay warm lupies!!!

~Tiffany~

OOTD:
Top and Jacket: Forever 21
Pants: Belk
Shoes: Belk Clearance Room

Tuesday, January 14, 2014

Pinspiration

As you all know, the hubs is in school full time, living in another state, and I am the only income of the family. With that being said, my clothing budget no longer exist. So, I have started a new hobby, that I like to call Pinspiration.

What I do is I find outfits I like on Pinterest, and I try to re-create them with the clothes I already have. I am going to try to do this every Tuesday. I love it!! They may not be the exact same, but they will be similar. I think it is so fun, and it makes me really happy to have a hobby that I can do, from home, that doesn't cost me any money.

So, what are your favorite hobbies that you do that helps to keep your mind off things? I'd love to know!!!

Have a happy Tuesday!!

~Tiffany~



Jacket: Bought of Poshmark
Shirt: Bought of Poshmark
Jeans and Boots: Belk
The only thing I wish I would have done different is put my Two Broke Girls Pearl necklace with it!!


(Pardon the angle of the pic...the princess took this picture this morning)

Monday, January 13, 2014

Weekend Update

Weekend Update = Womp Womp!!!!!!! While Friday was a very exciting day filled with meetings and basketball games, Saturday was the bomb.com!!!!

Saturday I did nothing but sleep. I mean when I say sleep, I mean sleep A LOT!!!!!!!!! My gracious and wonderful hubs let me sleep in until 12:00 noon!!!!! Yes, noon!!!!!! He even brought me lunch in bed and that is where I stayed until I fell back asleep at about 3:00 and slept until 5:00. My dad cooked omlets for everyone and after we all ate and watched a little football, it was back to bed for me at 8:30.

Sunday, we got up and went to church. It was a wonderful morning filled with encouragement. The hubs and I have started going to a new class and it is so encouraging!!!! I hope to share a little of what we are doing in there soon. After church, we went for some Mexican and then it was back home, and you guessed it.....a Sunday afternoon nap.

With all that being said, I know you are probably thinking how in the world does someone sleep that much?!?!?! I sleep that much because every day of every week is such a stuggle for someone with lupus. I do not stay up crazy hours of the night. As a matter of fact, I tend to get 8 plus hours of sleep a night!!! That is how much my body needs to rest after a 5 day work week. I do not work in the maufacturing line of work, nor do I do streneous activities during the week. I am a school teacher that gets to go home at 3:15 most days and rest until 5:30 or 6:00. Lupus literally sucks the life out of me and I don't know what I would do if I wasn't able to have my rest time. If I don't get a rest day during the weekend, you can pretty much bet your bottom dollar that I will miss a day of work because I am just too sick to function and in so much pain that it is hard for me to move. My weekends are precious and so is my time with my students. So, in order for it all to work, I have to stop, rest, and let my body recouperate from the week and charge up for the next one.

I hope you all have a great Monday and a great week!!!!! 

~Tiffany~

Here is a little something that will hopefully make you smile. This is my neice and her art work from the weekend. I was so impressed that she did not get anything on that pretty white dress!!! 



Thursday, January 9, 2014

Food Diary

I have got to, got to, got to make myself do it!!!! I have got to start keeping a food diary. I love blogging, but I never have been the greatest at keeping a journal.  Em J gave me a calendar a while ago that I forgot I had and it is perfect for my food journaling.

I have started a low key exercise regimen, thanks to the hubs, and I have begun weighing myself every morning. I know that you are not suppose to do that, but I have to see instant results. I have the I want it and I want it now attitude. If I can even see an ounce drop, I will be motivated to keep going. I know there are going to be days that I will not see any change or my weight may even go up. That's ok with me as long as I know I didn't blow the day and eat crap.

So, today is the day!!! I weighed this morning, I am going to write that at the top along with the date and write down everything I eat. I hoping to see where the problem is and fix it!!!

Have a great day Lupies!!!

~Tiffany~

Wednesday, January 8, 2014

So WHAT Wednesday

It's Back Jack.........So What Wednesdays!!!!!


Let's get started...shall we???

So What if:

When I was in the hospital and the nurse told me she was going to give me a shot in my belly, I started crying and flapping like a fish out of water. Give me a break folks....It was 2 a.m. and I was thinking I was having a stroke...a little freaked out is an understatement.

I'm currently sitting in a McDonalds writing this because my child is in ballet. They don't even have wifi up in that studio joint...SMH

I sleep with 3 blankets, a heating pad, and a dog to keep warm......it's flippin frigid here!!!!

I was not happy when school was not delayed yesterday. I think it is completely ridiculous that our kids had to stand and wait for the bus in negative temperatures. Not our highest authorities greatest moment.

I am flat broke. Christmas and being paid on the 20th with not another check until the end of the month kills me every year. Every penny I have in the bank is spoken for. They carry the names the princess and bills.

I HATE exercising. I mean, I loathe it!!!!! I know it is something that I should do and something that I need to do to lose the weight, but I would rather get a shot than exercise (and that is saying A LOT). 


There you have it folks...my what if's for the week. What are yours? I hope you have a happy worst day of the week.

Later Lupies

Tiffany



OOTD (Sorry, but I had to take this at work..Running late...It's life)
Sweater: H & M
Belt: Fossil
Jeggings: Belk
Boots: Belk

Tuesday, January 7, 2014

What it's like to move back in with your parents…….

Since…..whoa wait a minute…..the TV is on and there is a commercial on for a WaxVac for you to clean your ears…I have seen it all!!!!!! Anywho, back to what I was talking about, if you have been following my blog, you know that the hubs has moved off to finish his education and become a DNAP (Dr of Nurse Anesthesia Practice). Since, October, I have lived in my parents basement.

Y'all I tried…..I tried my hardest to do the single mother thing. Keep up with my house, run the princess everywhere for gymnastics and ballet, get us both fed, but I failed. I failed big time. When I found out they were selling my house, I sobbed like a baby, crying what am I going to do, and where am I going to go?!?!?!?! Little did I know, moving in with my parents would be a blessing in disguise. They have been my saving grace while the hubs has been in school. They help me give her baths, Daddy fixes us supper, and they help get the princess dressed in the morning. I say all this to tell you that just when you think you can't do it anymore, or you are at the end of the tunnel with no light, there will always be a silver lining. It may not seem like it at the time, but there is always something good that can come from everything.

Hang in there, say your prayers, and let the good Lord move in you.

Have a fantabulous Tuesday!!!
~Tiffany~
OOTD
Shirt: Forever 21
Vest: Gap
Scarf: Bought off Poshmark
Boots: Target
Headband: Etsy

Monday, January 6, 2014

Waaaaaaarrrrrrrr Eagle!!!!!

Good Monday Morning lupies!!!!! We were delayed two hours today and I feel great!!! A 1,000,000% better than this time last Monday……and that's where I'll begin.

I was hospitalized last Monday-Thursday for what was believed to be a stroke. I was in Jackson, TN (where the hubs goes to school) and I got a sever headache and had paralysis of my right side. I have done this before and the symptoms always went away, but this time they didn't. So, here we go…to the ER. Well, the first ER I went to didn't have a neurologist, but another hospital in town did. They load me up in the ambulance and transfer me to another hospital. This was about 12:00 a.m.

Long story short, I didn't get a room until 5:15 a.m. and they had me down for an MRI by 6:10 a.m. I had two MRIs and an EEG. They finally determined that I had an atypical basilar migraine. Side note: I have never had a headache in my life!!!!

I got to come home Thursday and went to my doctor in Birmingham Friday. I was signing in, and noticed a sign that said that beginning in February, that they will no longer accept my insurance. So…….I have to find a new doctor. Happy happy, joy joy!!!!

Happy Monday Lupies and War Eagle!!!!!
~Tiffany~


OOTD (It's War Eagle Day)
Sweatshirt: H & M
Leggings: Local Boutique $8 (the are fleece lined and sooooo comfy)
Scarf: Gift from Em J
Boots: Uggs




Lizzie and I say "Waaaaaaaarrrrrrrrr Eagle!!!!!