Saturday, April 26, 2014

Walking Through Turmoil

Ah excuse me a moment as I just blow the dust off of the keyboard.  I know... I know... it has been literally ages since I have last posted. A lot has happened as of the late and I have plenty to share.  Part of my long hiatus has been troubles with logging into Google Blogger.  For whatever reason it decided to be fussy every time I tried to log on and with limited spoons, I just couldn't devote my energy to trying to get it working again.  Today I didn't exactly have the energy but I don't do much outside of bed now on Saturdays, so I had the time.  Several hours later, here I am typing at last!  

I'll jump right into the nitty gritty here.  I've been on Methotrexate now for almost a year and a half.  For those of you who do not know what Methotrexate is, it is an oral chemotherapy drug used to treat various kinds of cancer and in select moderate to severe autoimmune disorders.  Why chemotherapy for Lupus?  Simply put there just isn't anything else out there to use.  A weekly dose of 10mgs was tolerable, 15mgs was okay... 20mgs was pushing it.  Now on Friday mornings I take 12.5mgs before classes start for the day and 12.5mgs in the evening.  In total my dosage is up to 25mgs, I am not tolerating it as well as I would like to.  Saturdays I spend sleeping in bed, throwing up, possibly walking Lily if I feel up to it and feeling absolutely lousy.  It's not fun.  I have rave reviews on gum though, it can help with the nausea. 

Psychologically going through weekly chemotherapy treatments is one of the most isolating and alienating feelings I have ever experienced.  I don't have Friday nights to go spend with friends doing fun adventurous things.  Saturdays are completely shot with me being absolutely exhausted from dumping toxins in my body the day before.  Granted I realize many college age students spend their weekends in a similar way, but generally they choose to and enjoy themselves in getting to the stage of performing mouth to mouth on the toilet.  Then Sunday comes and I just spend it doing homework.  It is hard to do homework with a fuzzy head, lingering nausea and still feeling like I am made of concrete.  Even holding a pencil is exhausting for me on the weekend.  It can be really hard for others to understand just how soul crushing it is to spend your weekends alone and sick, with nothing really to look forward to.  I don't have weekend plans ever.  I can't really, I'm scheduled already to be sick.  It is not uncommon for me to be in a puddle of tears on Friday afternoon because I know what is coming and I just hate it.  

This winter was filled with Prednisone, a wonderful steroid that effectively suppresses the immune system.  It also causes weight gain, moodiness and the ability to be nocturnal whether one really wants to or not.  What an experience it was!  I think this winter I consumed more chocolate than I ever had in the rest of my life.  Dark chocolate of course.  Nothing but the best for those steroid cravings.  

It was "dead week" for winter quarter at the end of March I got an email from the specialist that I see at the hospital.  She shared with me my latest lab results.  I should have not opened up that email... what I was told inside of it was not the news I wanted.  We're going to take another set of labs here soon to see if they turn out differently, or else I may be looking at an even more drastic treatment protocol.  I've had to incorporate stronger pain medication into my life more frequently now to help with the physical discomfort Lupus has brought me and to help keep me at a quality of life I can enjoy.  

I have a lot more to share about but am struggling to stay awake as I type.  More soon and many spoons! 

PurpleGirl :) 

     
        

Wednesday, November 6, 2013

Activisim

Life has consisted of chemistry, work, chemistry and Lupus.  Fall quarter has been a mix of flares and more comfortable states.  Though the good days right now are still outweighing the bad. As usual there has not been a dull moment or day in my life in living with this disease.  Still doing 20mgs of Methotrexate every Friday night, still taking my twice daily cocktail of other fun stuff and smilling.  Though in the past week I got to do something a bit out of my norm and speak out about my adventure with Lupus.  It was an incredible experience. 

I started my speech by walking up to the front of the room with a lot of blank stares.  I could just see the "but you don't look sick" on the audiences faces.  This is the first reason why I speak about Lupus, because I don't look sick.  After settling in behind the large wooden podeum I began my speech, sparing few details.  The energy shift in the room was like a magnet.  The repulsive field of two positively or negatively charged magnets that repel were suddenly switched into a positive/negative marriage.  Everything just clicked, the expressions of on the faces of the people listening were shocking.  To me living in chronic pain and fighting for each day is normal... for most that is not.  In the process of drafting my speech I actually questioned extensively several healthy people what they did in their day.  They don't get up at 5:30 a.m. just to go back to bed to have the medications kick in in time to be able to move at 7 a.m.  I thought that was a little bit interesting... the idea of just getting out of bed.  Hmmm... sounds nice!  

As my speech progressed to how Lupus and I have journeyed through college things got quite dramatic.  I have not had an easy college experience with Lupus.  Professors have demeaned me, I have been told I am not ready for higher education, and have experienced a great deal of discrimination academically.  Speaking out about this really brought awareness not only to my situation but to those who also have other disabilities who experience the same thing that I do on a daily basis.  When my own body throws up the challenge card of even being able to function on more than a "merely existing" level, going to college and dealing with all the stress that comes along with it can be extremely overwhelming.  I cannot begin to count the number of times I have come home from school in tears frustrated over how the faculty just "doesn't get it."  This is my life and will always be my life.  People will not understand.  It is one thing to not understand, it is another thing to not try to understand.  

Aside from all the bad there was also some good.  Through the ACCESS services on campus and various student based caring professors I have managed to have success.  Success I would not have achieved without the ability to have a note taker or extra time on tests.  Little things can mean big differences in academic outcomes for me.  Sometimes all it takes is an extra day so I'm over the effects of Methotrexate to excell at a test.  

My favorite part of the speech prompt was "What has made you stay in college?"  I'm a stubborn, determined little blonde person and sheer determination has kept me going.  I want a degree, I'm going to get one.  It is taking a toll on my health, I'm having a flare that is just trying to kill me but I love learning.  Regardless of the pain, fatigue and other associated symptoms I know this is achievable.  Though some sleep would be nice as I approach the last three week stretch of quarter...   

After, I spoke as a panelist answering various questions in the audience.  It was a ton of fun.  Rarely do I get to sit down and discuss disabilities on a level that is equal.  Generally it is a non-disabled individual wanting to know more about a disability without the underlying experience of being disabled.  I was on a playing field where everyone understood and all I had to do was talk instead of explain in great detail.  

In the days following a number of people who attended the panel have come and talked with me.  Many did not realize I was disabled and many more didn't realize how significant my disability is in my life.  This week alone I have had two days of body crushing fatigue where I have gone to school as a zombie.  It has also been beautiful to hear people open up about their disabilities.  So much gets thrown in the closet and hidden for fear of judgement.  It is okay to talk.  Stigmas will be stigmas.  Those who don't get it and don't want to, won't.  The people who actually care and want to learn will listen.  I've learned so much since the panel and have really had my eyes opened to new aspects of disability from so many people.  Even at the pool where I swim early in the morning a lap swimmer took note of me practicing my speech while waiting for entrance.  He hasn't stopped talking about me.  A close friend of his has lupus and is thirty.  She struggles daily with the same things I do, including being medication compliant.  Soon she will be starting college where I attend and my story has really been an eye opener to her.  Life doesn't end after diagnosis, it begins.  Part of activisim is letting that come out.  As my closing line went "Lupus doesn't run my life, I run my life with Lupus."   

Spoons! 
PurpleGirl  

 

Saturday, July 13, 2013

Wet Nose

Admittedly I have neglected my blog for well over a month now and while not much has changed with my daily battle with Lupus, things haven't exactly been dull either.  Doctors can make it sound like drug side effects are so simple and easily managed.  I am here to argue differently as this is my sixth week of tossing my cookies from Methotrexate and am now under the 120 pound mark.  The nausea follows me for about two days after treatment, the fatigue about the same and I won't even begin to dive into the stomach upset.  When I haven't been drugged I have actually been quite active and enjoying myself.  Though psychologically I have been a mess.  What has really been helping me to get through things is my four legged companion Lily.    When faced with so much criticism and biased challenges in both dealing with chronic illness and life it is nice to have a friend whose wet nose wakes me up by touching my feet in the morning.  

Lily has been keeping me quite occupied as we are taking competition obedience classes at a local training center.  Having this shared time and goals to work towards has kept me quite motivated.  She just loves me because I'm me and that is something people with chronic illness (or just in general) need.  There are so many that don't understand, don't want to understand and don't have to understand... animals sense our energy and respond to it.  Lily is currently flaking out with me as I type this.  She doesn't know why I am feeling so sick right now but she does know that every time she licks my face I laugh.  

I am in control of all of Lily's immediate needs.  Taking care of her helps me to take care of myself.  No she doesn't write lists on the white board for me or nag me to do my laundry.  However if I hear a bell ring, I had better get up and open the door outside or else there will be a puddle.  In dealing with illness a pet can provide a type of comfort no human ever could.  It isn't in touch or verbal communication, it is this unified feeling of love that comes from the desire to just exist together.  

I'm sorry to make this post so short but it is my "cocktail" night and I am commuting rather frequently to the throne.  Bananas are not half bad the second time around.  

Team "Lupus Sucks" is up and open for registration.  Please come and join me in the walk to solve this cruel mystery.  Lily and I will be there.      

Monday, May 6, 2013

"I Totally Understand"

Can a person truly understand what another is going through if they have not been in the same shoes?  No, one cannot.  I can't say I understand what it feels like to be a 6'2" tall NBA player, a Mom or about a million various other things.  People who haven't even heard of Lupus before suddenly become "experts" in thirty seconds after I strike up a casual conversation about my illness.  With chronic illness there comes with it a whole list of things people say that can be challenging and spirit crushing.  Nothing bothers me more than "I totally understand, believe me I do."  This was coming from a healthy person standing out in the sun enjoying the day, while I was running for the nearest shadow of a building so that I wouldn't get a rash on my cheeks. They don't get it.  My weekends consist of getting over the side effects of Methotrexate (chemo) and I don't just feel *tired* or *lazy.*  From Friday night to Sunday afternoon I am out of commission every weekend.  How does the other person feel they understands?  Goes out partying Friday and Saturday to spend Sunday with a hangover.  Difference between our situations: mine isn't optional, if I want to live I take the drugs I am prescribed.  Sure we both get some nausea and feel crummy but at least there was a good time before hand for the other person.  Before every dose of Methotrexate I take I get depressed.  Going out and partying all weekend isn't depressing and having a hang over is just an expected part of it.  I didn't sign up for Lupus with all of its drugs; but a party is sure an optional thing someone can get out of at any time!

My Mom has been a huge frustration for me with "I understand."  No Mom you don't.  Sure you've watched me battle this chronic illness for a number of years now with countless specialists and stress.  But you don't have Lupus.  This doesn't mean you don't care or don't have some level of understanding but you don't fully understand.  The rule book that governs how I play is far different than most 19-year-olds.  You give me this "I don't care" attitude whenever I talk about how I am struggling with some part of Lupus and then tell me you "understand."  Could you cut the fuse any shorter?  Telling me you just don't want to deal with it right now isn't an option because I can't just throw Lupus under a rug and forget about it.  I wish I could.  Most of the time I don't come to you with a problem unless I feel it is of significant impact to me anyways.  The dent this disease has made on every aspect of my life just keeps getting bigger and I need support that doesn't just assume they know how I feel or embarrasses me.  A week back I went to volunteer at an event with my Mom and I was on the recovery phase of Methotrexate.  My Mom felt the need to tell basically everyone that her daughter is drugged in very explicit and mildly dramatic ways.  Excuse me Mom, but no.  I may be drugged, all for Lupus awareness but there is a time and place for disclosing health information.  It hurts my feelings and upsets me.  When I say "Please stop" and get told "It's my job as a Mom to embarrass my children."  The compassion and understanding meter I know has sunk to zero.  Plus it is just plain rude.  (I love my Mom very much regardless of her sometimes challenging actions.)  

The real kicker to all this is I just can't say "you don't understand."  People get defensive, they feel hurt and their egos get crushed.  I tonight had just had the last straw pulled with my Mom and said "you don't understand."  Imagine how that went for me... yup I'm not even married and out on the couch tonight.  Verbal hell-storms have erupted before when I just couldn't handle another minute of people "understanding."  Do I have regrets?  Nope.  There comes a point where I just don't care anymore myself, heartless as it may seem.  Part of being chronically ill is learning not to care about the world which is never in control and the words that come with it.

Best case scenario is someone who says "I don't understand."  I can deal with that.  No it isn't a sign of ignorance or not caring, it is a sign of truth.  When a person feels comfortable enough with themselves to admit how they truly feel, the world rolls in a much smoother harmony.  Pathways of conversation are opened with accepting ears.  Listen and one shall learn.

Happy Lupus Awareness Month!  The time to wear all the purple, use spoons wisely and remember the fighters who have moved on to a better place.  "POP"- Put On Purple Day is May 17th, please join me in my purple parade. :)

Katyann

Tuesday, March 19, 2013

Friends are Cool Beans

I love my friends, all of them and all the time.  One of the differences between the friendships I have now and the friendships I had five years ago is every single one of them has endured a unique test.  Some friends I have learned are great on the upswings but kill me when I am down.  Others absolutely amaze me at the amount of unconditional love and compassion a person can show.  No matter what friendship I have and what status it is at, illness has always added a spicy third dimension.  Illness in my friendships, it is an unavoidable annoyance.  Unlike myself, my friends always have the options to say "I just can't be with you/deal with it today"; I understand because honestly I want to not deal with illness myself a lot of the time.  If I could, I would choose to get away too.  There are no hard feelings surrounding this as I see no reason to have them.  It is far better to have a friend admit they can't, than to have them be with you and break them.

Unlike most traditional friendships, a lot of times hanging out with me is just watching movies or having a very quiet time of tea.  Yes, I do get up and roaring when I have the spoons.  I have had some pretty fun adventures so far this year with my friends.  Most of the time I do not feel up to doing such things sadly.  Take for example this morning: I got up feeling fine and now I can hardly sit up.  How can I be a good friend if I can't even get out of bed?  No need to answer... there is no easy answer.

I wish I had the ability to be a "normal" friend.  One who didn't need help getting up the stairs on a bad day or someone to grab medications when my hands just won't work for me to open the bottles.  I've learned not to get embarrassed as easily or hide as I used to.  Like any wounded animal, the main instinct is usually to flee and hide.  Through this blog and slowly learning/accepting I am loved regardless of what my body is choosing to do has helped me to feel comfortable with friends at all times.  

In my amazing and wonderful assortment of friends I have experienced love so many people never experience in their lifetime.  Daily I am reminded I am not alone in this.  For as much as I struggle to cope, there is a whole army of people around me willing to help.  Not everyone has this and I am blessed.  My male best friend I cannot even put into words the amount of unconditional love and grace shown to me (and how much I feel in return.)  From adventuring with me, to being willing to spend Methotrexate nights with me even though vomit is one of the few things not in the comfort zone.  Times when I expect the most strain, instead I am surrounded by far more love than I can comprehend.  The things I have learned from this particular friendship are so powerful and positive, it has changed how I look at my every day life.  Love is not something that can be bought or created, it just happens. * As I composed this paragraph I hesitated to include gender because of assumptions.  Gender is only a boundary composed by society and it is amazing what can come from breaking it.  It makes me smile just thinking about it.*    

Chronic illness is something that can easily become the focal point of a friendship.  I try so hard to not have it be but Lupus in the end dictates just about every move for me.  This isn't exactly something I can just put "in the closet", though I really wish I could.  It is incredibly taxing on me and a friend to make plans for an evening, just to have them blown to bits by a bad day.  I can only imagine the frustrations I put on friends at times... I'm sorry.  At times I feel inept as a friend.  There is only so much I can do and sometimes it is just getting down the hall for water.

One of the hardest things is loosing a friend to Lupus.  Now I don't mean they get Lupus and die... they just can't be around someone with Lupus/can't understand and just won't listen.  Hard to accept inside it is in part me but far more them and I am loosing nothing.  A friendship that isn't whole or turning to be toxic is not worth my spoons.  Why should I drink poison when I can have love instead?  Still it hurts really bad.  Loosing someone on something I can't change, oh... it just can burn.  

I cherish the love, memories and experiences from my friendships.  They are far more powerful than anything Lupus could ever throw at me.  Friends, you rock! :)    

              

Thursday, February 14, 2013

It Is Time To Be Open

Inhale... Exhale... Rinse and repeat. If the title didn't clue you in, I have had some rather major things I have been keeping quiet lately. They aren't really all that good either and that is a large part of why I have not shared yet. I feel it is time to be open now as things continue to progress and my life continues to be impacted in new ways. Before you read any further about what is going on in my "lupie life" I would like to stress I am chronically ill, not dead.

In December I started to see a new rhuemy and she is fabulous. I believe I have already blogged a bit about her so I will not go any further with her bedside manner. Upon a physical and laboratory inspection it was found I am not in remission. As a matter of fact my lupus was found to be "blossoming" and I was prescribed steroids. What I did not add in my blog at that time is I also started weekly chemo treatments. Right now I am on them indefinitely. Methotrexate is not a drug for the faint of stomach. It does a pretty good job at making me sick and tired. The payoff for me has been a great reduction in pain and inflammation from it. However according to my lab work in other parts of my lupus, things have continued to get worse. I got the call about three weeks ago that I am not responding to treatment and as a result I am now on a higher dose. If things continue to get worse my rhuem will also add Cellcept. If you would like to talk nightmare with lupus... This would be one of them.

Methotrexate is a "gold standard" drug for many types of cancer and RA. It was developed in the 1950s time frame and the long term effects are well known. I am fortunate to not require injections of it at this point, though in the future that may change. The main side effects I experience are stomach pain, nausea, fatigue and mild vomiting. Nothing that a teddy bear and a day in bed cannot help make better. But it pretty much destroys my weekends as I take it Friday night and am down all Saturday.

Taking the first dose was a terrifying experience. I am glad I got the guts up to do it because in the ways it is visibly helping, choosing to not take it probably would have made things visibly worse. Yes, I used the word "choose" because a person always has a choice in their treatment. Though the decision they make may cause them to die or live... It is still a choice.

Emotionally I have really struggled with this. For a long time I was just under heavy pain management and the maximum dose of plaquenil I could tolerate. Now I keep on getting more skewed results, more hour long appointments and meeting so many really smart people who are fascinated by my lupus. It really takes a toll. Especially hearing I was not responding as my rhuem had hoped. Playing the game of quality of life is not something any 19 year old person should ever have to go through. Plus chemotherapy and college... It is a challenging combination.

There it is off my chest, finally. Sigh. Yawn. Late night confessions are charged things.

I hope you all have a wonderful Valentines Day and many spoons!

Meds before upping things. Yay steroid sparing life improving drugs!

Thursday, January 24, 2013

The Spoons of Education

College is a milestone most of us will divide and conquer at some point in our lives.  But how does one with a chronic illness such as lupus jump through the hoops and not completely loose it in the process?  It is a very delicate balancing act consisting of planning, planning and a lot of spoon usage.  This quarter especially has been a huge challenge for me.  I am confronted with tons of memorization and not enough time to do it all in. That is only the beginning of the laundry list of struggles I have experienced with my time in higher education...

Professors can be very good at dropping surprises.  A common one that makes me want to attack them with my bare hands would be "oh by the way this will be on the exam tomorrow."  Yes, well thank you very much professor.  I do get outlines for my classes and hand outs.  But there seems to always be that one rogue detail left off that doesn't come to light until the night before.  I am on a study break right now from one such rogue detail that was exposed yesterday night.  What makes this hard for me is I only have so many spoons set out for a certain day and I have them planned out.  Two for class, two for studying and one for driving.  It is a well thought out and almost scientific way of conducting my day.  There comes a point where I just have to let these surprises go because I do not have the spoons to cram them in like other people may be able to.

I try to be a very self sufficient person who academically can pull her load without a ton of outside help.  However I function best with a study buddy/note taker.  Sometimes I can't make it to class or even if I come to class I am not "there."  For anyone who has been around a "checked out" Katyann, you know that I am about as capable as a really drunk person.  In other words not very capable at all.  Half the time I am in such a state I don't even remember driving to school.  There have only been a couple classes I have had a reliable and good study buddy/note taker.  There comes a point where I cannot write anymore or can be struggling with just comprehending the lecture.  Simply having that other person there taking notes and later on being able to discuss with them what happened in lecture is priceless.  Yes, I realize there is the option to record lectures but it is a hassle and frustrating because in the classes where recording would be optimum I am blessed to be sitting next to a Chatty Nancy.  In the case I am blessed with a quiet class I do take advantage of recording devices.

Studying takes an amazing amount of spoons.  Shoving bucket loads of condensed information is a lot for anyone.  Tag on lupus and the recipe for success suddenly becomes like a Gordon Ramsey cooking show.  Very stressful and full of cuss words but somehow at the end things turn out okay.  I study around 10-12 hours a day including class.  My life consists around my textbooks Monday through Friday.  This may sound extreme but I have a hard time getting things to stick in my foggy head.  I do not always have the advantage of having a clear mind to study with.  Nor do I always stay awake during those 10-12 hours.  It is not uncommon to see me fallen asleep in a textbook.

Physical strength is another limitation I have.  I know, this is really an odd one.  I'm 19 and look as healthy as a horse.  I should not be struggling to tote around my textbooks and supplies I need for class.  Sadly I do.  My back cannot tolerate the load of manuals and textbooks, the pain is just too much.  Plus on a day leaning towards the "bad" side of the spectrum, my whole body feels as though it were composed of concrete bricks.  Not so conducive to even getting out of bed, let alone lug around a backpack on campus.  I have sacrificed having a textbook in a class as a requirement for keeping my pain and spoons where they should be in order for me to function further through the day.  

Stress has to be my number one enemy.  What can cause Lupus to come out of the woodwork and go crazy?  Stress!  What does college consist of mostly?  Stress!  A lot of people in my classes ask me how I can be so chill about even the most stressful of things.  Quite simply I cannot afford not to be stressed.  I have no choice but to just at the end of the day breathe out and say "100 years from now this will not matter."  It isn't easy when I have two major exams stacked into a two day period and a to-study list as long as my arm.  But I want to be in remission and I"m not going to be in remission if I stress about every single little test or paper.

With all this being said I am enjoying college.  I love the learning and experiencing new angles on life I have not had previously.  There have been some real eye opening moments I have had in the past year and a half.

Lupus has been treating me decently these days.  I have more good than bad days but when a bad day strikes... I am DOWN.  Today I went in for lab work at the UW.  Hoping it comes out better rather than worse.

Many Spoons!