Gratitude List

So I mentioned Crazy Sexy Cancer the other day.  Well the creator of it made a website called Crazy Sexy Life that includes a blog.  Today's blog was was "Tips for a Better Life".  I loved all 20 tips but #3 really stuck with me.

3. Try to make a gratitude list each day. Include big things and little things. Invite your friends to make their own lists; you can all email one another each day, sharing your gratitude.

So here is my gratitude list for today.

1.My cat, Tess, who is always ready to cuddle with me.  She snores but I'm ok with that.
2.The color pink.  My bedroom is decorated in pink, kelly green, and brown.  Pink soothes me a lot.
3.Homework helps me take my mind off the pain.
4.Chocolate...who isn't grateful for chocolate?
5.The internet because it helps me connect with people.
6.Essential oils (Young Living): Panaway is like crack to me.
7.My mom cause she still lets me sit on her lap and rock.
8.Oxygen, weird I know.  Every time I take a deep breath I'm grateful.
9.Mr. O because he is so loving and thoughtful.
10.The love everyone has shown me because I wouldn't be the person I am today if it weren't for all the people who have loved me.

Mr. O and Angelala

Living with Lupus...in College/School

I decided to start a series of posts entitled "Living with Lupus..." and specifically focus on one aspect of life.  Since I'm currently in a flare and school is my biggest concern...that is the focus of the first post.

I was diagnosed with APS when I was 16 and over five years later, my illnesses still aren't under control.  So how have I managed to finish high school (missing around thirty days my senior year) and do well in college for the last three plus years?  I've had a lot of help.

Gotta give mad props to the Americans with Disabilities Act for applying to education as well as employment.  How does it apply?  Basically teachers/instructors/professors are legally obligated to make accommodations for people with disabilities.  Of course, these disabilities have to documented by the educational institution.  Instructors must be informed of these accommodations...not going to lie this is usually awkward.  The school that I currently attend has a Disability Office which I visit once a semester to meet with one of their advisors.  We go over my class list, talk about the previous semester's accommodations, and what we might need to change.  My accommodations haven't changed for the last three semesters which is nice.  The awkward part comes when I have to approach my professors, tell them I have an illness and work with the DO, and nicely inform them I might miss multiple classes.  My accommodations include extended absenses, extended time for tests/assignments, and a copy of the notes if I am gone.  Not that bad right?   still no one likes to hear that but I haven't run into any problems at school so far.

High school was different, mainly just because of the paperwork.  We had an amazing school nurse who is one of the most caring women I've ever met.  I basically had to fill out a 504 plan which just informs teachers what to do if I was gone for a significant period of time.  It was hard at points but I got everything done.

My mom...bless her heart times about a million.  I have been lucky enough to live at home all through college.  I couldn't live in the dorms...things are too inconsistent.  Lupus is all about balance...I'm walking on a tight rope every day.  I worry about school and that's it.  I don't have to deal with food or anything like that.  I'm not completely dependent!  I clean, do my own laundry, blah blah blah.  But the idea of cooking dinner every night plus homework etc seems too daunting.  I would probably just skip dinner (and weigh less). 

Now, another thing that has helped me in school is Vocational Rehabilitation.  I did not even know about this program until the nurse I mentioned earlier (the wonderful one...remember?) told my mom about it.  Voc. Rehab has essentially paid for half my tuition.  In the last three years, it has made it possible for me to not have a job.  Me + job = disaster!  I simply can't juggle a job and school and do well at both.  Believe me, I've tried....Voc Rehab is a life line for me!!!

And the last thing that has helped me survive college with chronic illnesses is myself.  I work hard.  I work through pain and frustrations.  I work ahead of peers in case a flare does spring up.  (Thanks to my illness) I don't go out...I stay home and do school work.  So see not everything about illness is bad!  Cheer up buttercup!

If anyone has any questions about different programs or specific tips for college life with chronic illness, let me know and I will try to help!

Lupie Days

Today (and yesterday) have been bad Lupus days.  I ended up staying home from school yesterday and came home early today.  Thankfully, I have understanding professors (one has fibromyalgia).  It always takes me forever to decide if staying home will bite me in the ass later.  I'm hoping that this isn't the start of a flare.

On the Daily Show last night, there was an author who Bright-Sided who basically said that having a positive attitude doesn't help.  She was diagnosed with breast cancer and was disgusted by people who, in the words of Dr. Cox from Scrubs, "vomits sunshine".  I have been living with illness for almost six years which is getting dangerously close to a third of my life.  The only way I have gotten through all of it is my positive attitude.  That's not to say I haven't had bad moments where I've had pity parties for myself.  I just don't think that it's going to help by feeling miserable and depressed all the time.

Also on last night, I watched the documentary Crazy Sexy Cancer about a young woman documenting her battle with cancer.  It seems like I watch a lot of tv...doesn't it?  She used a lot of different alternative medicine like macrobiotics.  She said, "I just want to have a normal life."  Oh, honey if it were only that simple.

Lucky Lupus Liver

     When I was pregnant, I was unbelievably sick.  I really can't even describe how awful I felt.  I suffered from chronic headaches and eventually started twitching.  My head and neck would move uncontrollably.  I was told by one doctor it was nerves and hormones.  My mom, bless her heart, did so much research.  That summer she figured out that I had Antiphospholipid Antibody Syndrome (APS).
     The morning my son was born I went into the hospital with vomiting, high blood pressure and massive swelling.  It turns out my kidneys and liver were shutting down and Little Man's heart rate was dropping.  I had really, really bad Preeclampsia.  I ended up having an emergency c-section two months before my due date.  My son was 3 pounds 11 ounces when he was born...the reason why I call him Little Man.  It took over a week in the hospital and I was finally well enough to go home.  A hematologist diagnosed me with APS and prescribed me blood thinners.  I just celebrated my five year anniversary with my blood thinners this summer.
     A few years later, I saw a rheumatologist and he diagnosed me with Lupus.  Most likely, my APS is just part of my Lupus.  This is a super fast version of my diagnosis!
    Living with Lupus is a lot harder than being diagnosed.  I have arthritis in both hands, my right knee, and left foot.  I have extreme fatigue.  I have flares about every three-four months.  My flares usually put me in bed.  There is no way of knowing when a flare will jump up or how long it will last. 
    Not everything is bad though.  I have a built in excuse to not do stuff.  I have a better appreciation for good days.  Oh and I was on the show Mystery Diagnosis when I was 18.