Long Distance Baking

Anyone with Lupus or any other chronic illness knows there are times when you are going to be in pain and there ain't much you can do to stop it.  One of my tips is chocolate...and lots of it.  And loving Mr. O is an expert on this fact.  He has been known to send me personalized m&ms that told me "I love you" "Happy Anniversary" etc.  Sometimes he would do this for no reason.  Today I got home to a package from Mr. O that contained homemade brownies with cream cheese frosting that he mixed raspberries into.  Granted they aren't the prettiest things but oh my goodness....they are delicious!!!

Photo by Angelala

Now Mr. O is a thousand miles away so he Fedexed by little present.  Miss Tess my 14 year old cat decided maybe she wanted to go see Mr. O.  Such a silly girl

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.

Gay (LGBT) History Month

     October is Gay History Month or LGBT (Lesbian, Gay, Bisexual, and Transgendered) History Month.  I am so lucky to have LOGO in my satellite package.I wouldn't even know about it with that blessed channel. 
     In case you've been too afraid to watch the "Gay Network", you've missed a lot!  You all know I'm from a small town where sexuality in general is not discussed.  It is easy to be prejudiced because you aren't exposed to other things.  Watching love stories about two men, like Adam and Steve, or two women, like Imagine You and Me, have made me more comfortable with actually seeing LGBT relationships in front of me.  At the same time, it makes me so proud that the Iowa Supreme Court legalized gay marriage...way to go Iowa!!! 
     Yesterday on LOGO there was an awesome documentary called A Jihad for Love.  It was about the struggle that gay and lesbian Muslims have faced balancing their religion and sexuality.  But it went beyond the religion and into the governments of places like Iran where homosexual sex is illegal.  The punishment for one of the men caught included 100 lashes....truly sickening.  A lot of the men and women had moved to more inclusion countries like Turkey and Canada.  
     So, I tagged this post as education for two reasons: 1) because all people should be educated on the struggles faced by LGBT people and 2) because educators have to be really sensitive in these areas.  All students (in high school) are discovering their sexuality, no matter the preference.  But no teacher wants to bring this issue up.  I found a wonderful article called "Raising Gay/Lesbian Issues in the Classroom" that give examples of issues and potential ways for teachers to deal with them.  They are generic but still helpful. 
     In this month that we are celebrating the fight for civil rights among the gay and lesbian community, we should remember that the struggle was started because of love and that's how it should end.  With all people accepting that love really is all we need.

Beauty au natural

     If you look at any typical college campus, you will most likely see girls wearing sweat pants, uggs, and too much make-up (or in some cases none at all).  I have never been a typical college girl and in the last year I have gotten even more different.
     I am not a big make-up chick but I usually wear foundation.  Recently, I decided I wanted to switch to organic make-up because of all the things they put in make-up.  Unfortunately, I'm still a poor college student who doesn't want to spend $45 on foundation.  Luckily, I found Physicians Formula organic make-up at target for about $13.  I also use their powder sometimes as well.
     Baking soda is your friend!  I use a baking soda/water paste for pimples.  Baking soda also makes your skin silky smooth.  In the last few months, I stopped shampooing and conditioning my hair (in the traditional sense).  Here is my nightly ritual: I take a small container (reused from my mom's tupperware drawer) put a tablespoon of baking soda in.  Mix in two tablespoons of water and stir.  This is a paste and should be sort of thick.  Then I take my apple cider vinegar, one tablespoon, and put it in a squirt bottle.  I mix in around four tablespoons of water and shake, shake, shake.  Once I'm in the shower, I just massage the baking soda mixture into my scalp.  I typically leave it in for a little while then rinse well!  Then I just squirt the apple cider vinegar into my hair and run my fingers through.  FYI, if you don't throughly rinse out all the baking soda, you will have a volcano effect on your head.  The reaction to the vinegar will cause bubbling.  This won't hurt you...I've done it a few times.
     I am trying to eliminate all harsh/unnecessary chemicals from my (simple) beauty regiment.  Need some different ideas?  I also find Planet Green: Fashion & Beauty so helpful.  Try some natural beauty treatments.  My next project is a sugar exfoliator.  Does anyone have some natural beauty treatments they'd like to share?  I would love to hear them!!

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.

Love (can) = Life

     My love story starts with two stupid teenagers...like a lot of love stories.  Mr. O and I met when we both in a musical in high school.  He was the lead and I didn't even have a speaking role.  In my defense, he was a senior and I was a measly freshman (which makes a huge difference in casting).  The love part didn't come until later after he graduated.  He asked me out on a date and I said yes...duh.  We went to get pizza and then off to the arcade (my idea).  I think he started loving me that night because of the arcade idea.  I'm a goofy chick what can I say?
     That summer went by pretty fast.  Mr. O and I had a wonderful time but he was getting ready to go off to college and I was stuck in our home town.  I was crushed the night before he left.  We talked on the phone every night and he came home as often as he could but our relationship suffered.  I often felt left behind and neglected. 
    Fast forward a few months and I was pregnant....and 16.  I told you it was about stupid teenagers.  The relationship had ended but I was forced into communication with Mr. O because of the baby.  We had broken each others' hearts.  I won't go into the details but things did not end well.  Our son was born in July of that year and we placed him for adoption.  That is a totally different post that I will go into another day.
    Mr. O and I saw each other once after that.  He brought a birthday present for Lil' Man.  The sighting lasted all of two minutes and ended with him saying "Good luck" and walking away.  It still hurt to see him leave.  But my life moved on, I graduated from high school and went on to college.  Mr. O finished college and went on to graduate school in Philadelphia.  Mr. O continued to infiltrate my mind and I missed the boy I knew when I was younger.
    The summer before my junior year of college he seemed to be ever present on my mind.  All of a sudden I got an email from him that he wanted to see him when he was home visiting from Philly.  I knew I had to see him but everyone around me including myself was anxious about the meeting.  Mr. O and I didn't get along and there were still raw scars.  The day of wasn't too bad until I was sitting there waiting for him.  I saw him walking towards me looking really good and then he bumped into a table.  Oh yeah, he was still my Mr. O.  That night ended in a kiss which I can still feel when I close my eyes.  The feelings were still there and somehow I knew things were going to change dramatically. 
    Fast forward...again...over a year this time and I'm not pregnant! Yay!  (Have to celebrate the small stuff).  Mr. O and I are still happily together.  He is my best friend and the absolute love of my life.  He finished grad school and is still in Philly working and I am sort of closer to being down with school here in Iowa.  We talk on the phone for at least an hour every night, waste time IMing each other during the day, and webcam regularly.  We see each other every three months(ish) with me flying out to Philly or him coming home.  
    Stay posted for how we keep our relationship strong, healthy, and full of love!