Three Things I’ve Learned From Being Sick

In real life I don’t really talk about my health all that much.   I’m not nearly as whiny in real life.  I justgrin and bear it and get on with my day.  My blog allows me to express things that I normally wouldn’t in person because I don’t want to come off as whiny, and plus people wouldn’t understand…

Not a lot of people really care

Short of a hospitalization not a lot of people really care how I feel on a day to day basis.  The only people I really believe genuinely care are my parents and my three best friends.  It’s sometimes hard to take in especially you confide in someone you think should care.  This happened when I told my brother I was sick:

Me: You know I’ve been sick right?
Him: Yeah, you’re always sick.
Me: Well the doctor said I have arthritis.
Him: …
Me: And it’s autoimmune.
Him: Okay…
Me: You don’t believe me…
Him: ….
Me: Well I’m just letting you know so you know that it’s in our medical history and if you have kids and they get sick…it won’t take so long to find an answer
Him: Well I’m not going to tell my kid’s doctor that…
Me: Do you even understand how painful this is?
Him: No.
Me: Well it’s the most painful thing I’ve ever experienced.
Him: Okay…
Me: Thanks for caring.

It’s gotten better with him, now that it might be lupus.  But it (my disease) shouldn’t have to have a name before one starts caring about the health of  their sister

Not a lot of people understand

I don’t really expect people to understand how much pain I am going through.  But sometimes it really dawns on me that people who don’t experience chronic pain/illness have no idea what I’m going through.

My mom is always telling me exercise will make me feel better, or this and that herb will be a cure.  I know she means well, but if it were really that simple I wouldn’t have had to quit playing basketball in high school, and while I do not disregard holistic medicine it frankly does not work.

Someone told me that their father wanted for Christmas was some cream for his arthritic finger because I should be able to relate to having an arthritic finger.  He only has arthritis in that finger !  Only thing is osteoarthritis (arthritis from wear and tear) and autoimmune arthritis are two totally different things.  I wish I had only an arthritic finger.  Instead my shoulders, knees, hips, and elbows hurt. I run fevers on a lot of days.  I have to worry about kidneys, liver and other organs.Not to mention the crazy headaches.

How to appreciate the small things

Even though I may sound really whiny.  I am very happy with life. I was visiting a friend in DC who wasn’t happy with where her life was going.   As I listened to all her woes, I thought, how wonderful it would be to have all her problems but to feel 100% healthy.  Honestly last year I was downright depressed from the pain I was going through, and even though I’m far from feeling 100%, the reprieve from the pain has made me happier than I think I have ever been in my entire life.  I don’t have a boyfriend.  I don’t have a “job”.  I spend 80 hours a week doing school work and I get paid below minimum wage, someone hit my car last month, my phones screen shattered into a million pieces, I’ve been having some major financial difficulties lately, but my gosh I am so freaking happy because I don’t feel like I am dying every waking moment of every single day. Seriously.

Fevers and Stuff

This is not a formal blog post but I am writing this to help keep track with my symptoms.

• So I decided to get a thermometer to track my temperature since I often feel feverish when my joints are aching.  And in fact I do seem to run low grade fevers around 99.5-100.0 when I’m not feeling so great.  When I feel fine my temperature is usually 97.6.
• The primary symptom that sent me running to find answers last year was hair loss.  My hair was just coming out in clumps and it was so sad.
• My liver enzymes are elevated. I have to get them checked again in a month to see if they go back down.  My doctor said it’s probably from drinking (I don’t drink) and google says it usually is just a fluke and means nothing.  But still I worry because one thing it COULD be is autoimmune hepatitis.
• I’m guessing my inflammation levels are back to normal.  My doctor doesn’t really share too much information over the phone.  I should have asked.  Last time it was over 70, this time she is not concerned.  From google I hear that around 40/50 people feel pretty shitty.  100 could mean cancer.  I haven’t seen too many people mention levels in the 70s 80s 90s or 100s.  So my inflammation level was pretty significant.

It’s Beginning to Look a Lot Like Lupus

Good Lord, why does it take so long to reach an official diagnosis? I’m in pain but not as much as before, I think; I’m not sure because I’ve been in a “flare” for the last 3 weeks.  So pretty much I feel like crap right now. I had an appointment with my Rheumatologist today and I was referred another doctor that specializes in lupus.  So far my blood work isn’t looking too abnormal but symptoms say lupus and my inflammation is extremely high.

I have been going down this autoimmune-disease path for about 8 months now.  And there is a 4 month wait to see this other doctor.  So by then a year will have gone by.  A year without any definitive answers.  A year of not being 100% pain free.  A year on top of the previous 5 years I’ve have been dealing with all of this.  This is beyond frustrating.  But unlike this time last year, there is hope. I am confident this is the right path. I wish the real medical world were like House and I could get a diagnosis in a few days.

Study Plan

The Test

It’s about 11 weeks until the big test.  I do not feel to comfortable about it just yet but I’m trying not to freak out.  I’ve decided that between now and then I will put in a whooping 500 hours of study time.  After I’ve studied for 100 hours I will re-access how I feel about the test and then proceed to freak out.  So the study time starts today.  Here is the plan:

1. Study at least 4 hours a day
2. On days I don’t have anything to do study for 8 hours.
3. Spend 2/3rds of the time going over practice problems and 1/3rd of the time going over vocabulary and terms.
4. Rewrite the study plan after having studied for 100 hours.

Classical Guitar:

I picked up classical guitar starting today.  I had bought an acoustic guitar several weeks ago but I realized that I really am a classical music person so I have now switched to classical guitar.   I’m giving myself 6 months to complete numbers 1 and 2 of the following plan:

1. Hal Lenoard Guitar Method Book 1 & 2
2. Learn a couple songs from the “Easy Classical Guitar Solos” book (which has proven to be quite difficult).
3. Move onto Berklee’s Guitar Method as well as Hal Lenoard Guitar Method Book 3.

Day 1 Progress

Qualifier: 4/500 Hours

Guitar: Exercises 1-17 of Hal Leonard.

I plan on updating this weekly.

Much Needed Update

Sorry for not updating for a while. I will try to keep this update short and sweet:

1. I have a new laptop! I was without a computer for a while, hence my lack of updating .
2. School is going very well.  I feel like I can get through this quarter with better grades than last quarter! It’s still insanely difficult but I’ve found a better way to study. I have a new plan for studying for the big qualifier test. It’s in about 4 months and I am planning on studying 500 hours for this test before then.  I started this study plan on Saturday and so far I have studied 7 hours.
3. My health is okay. It’s definitely better than it was but I’m still not feeling as well as I hoped I should.  I don’t think the new medication is working as well as it should, but I do feel like I have a lot more energy.  My main issue is pain. Oh do I wish I wasn’t in pain all the time every day.  I’ve had a grand total of 4 pain free days this year, and they were all in the first couple of weeks in January. It is so frustrating.

That’s all for now!

2011 In Review

When I don’t think about the awfulness of graduate school 2011 was a really good year for me. For the first time in 5 years I am no longer in pain every single day.   An improvement in this one seemingly small facet of my life has helped me in other areas.  I am now able to socialize more instead of spending all my free time catching up on sleep due to extreme fatigue.  I am also a much happier person. I now realize  how depressed I was when I suffered from constant pain.  I no longer feel that dark cloud over me. I feel free. Even still, I’m not 100% pain free and I’m not sure if I ever will be.  I have to wait 6 months for this medication to kick and I already feel better after 2, but I still experience a significant amount of pain. I know I talk about my health a lot but right now it’s probably the number one thing in my life that’s constantly on my mind so now onto another topic…

I finished the master’s program in June, but didn’t get a master’s because I started the PhD program in August.  The master’s program was easy but the PhD program is tough. I’m really going to have to step it up this quarter and the subsequent one after that. I have the big test to pass in June and I’m really nervous.  I did horrible my first quarter but I’m sure if I focus more things will work out just fine.

I was really hoping by the end of 2011 I would be in some sort of relationship but I am not.  Some days it gets me down, but then when I see how some people have let relationships ruin their lives, I am content with waiting for the right person.

I have been able to discern my true friends more so this year than any other.  As I get older the friendships I make are stronger than ever before and it always feels nice to know you have a few good friends (especially if you are as socially awkward as I am).

So 2011, I’d give you an 8/10.  Which is pretty high for me. It’s been the best year for me that I can think of. I can’t wait to see what 2012 has in store!

Slowly but surely there is improvement

I don’t think anyone can truly understand how depressing it can be to be in chronic pain until you have experienced it firsthand.  I spent several years suffering in silence.  When I did talk about it, no one really knew how much I was hurting.  I think the worst part of it all was when people didn’t believe how much agony I was in.  Some didn’t even believe I was in pain at all.  That hurt more than anything. I hid my pain well.  I still hide my pain well.   This is easily the most painful thing I have EVER experienced and I lived with the pain for YEARS.  With each new symptom I became more and more drained physically as well as mentally. On my lowest days I was certain death would be better. I could never kill myself, but I just wanted all these issues to disappear.

After years of struggling it’s finally under some sort of control. Because of this, I am a MUCH happier person now than I was just a mere 6 months ago.  I still have many bad days but I also have the good ones.  And now that the good days outnumber the bad, I can’t help but be grateful.

It’s Over!!

My first quarter as a PhD student, and it was… humbling. Being sick still made the quarter very difficult,  but I know it can be done.  Also I have a feeling next quarter will be infinitely better!  My final exams were on Tuesday and I came back home (to the DC area) on Wednesday.  I didn’t do ANYTHING on Wednesday which felt so strange.  Today I studied for a total of 2 hours.  Tomorrow I’m going into the city.  It feels so weird to take a break!!!

So the plan from here on out is to study at least 4 hours a day when I have something planned and 8-10 hours a day when I don’t.  Graduate school is my job right now and I will treat it as such. Plus, I am not happy with how I performed AT ALL.  By the time I realized what my shortcomings were the quarter was practically over.  So I need to review LONG and HARD.  I think 3 weeks is more than enough time to go over 10 weeks worth of material especially since  I don’t have to deal with homework or three other classes.

I’m certain if I can stay focused throughout the break I will have no problem passing the qualifying exam in June.

I am going to Atlanta for new years and school starts again January 3rd!

The delete

So I got deleted as a facebook friend by a friend I had an argument with roughly two years ago. I can’t lie and say it doesn’t bother me, but the thread of friendship we had is officially over.

I know what went wrong.

I made a facebook status last week. It was a generalization about how people use ambiguous statuses to vent . I was trying to be funny. But this person thought I was taking about them since our argument started with some facebook stuff she posted. I find it odd she would think I would post a facebook status about her over something that happened 2 years ago. But she did, and I know she did since she couldn’t resist leaving a rude comment.

Rude Awakening

I’ve taken two tests since I started the PhD program. The first I did alright, the second I failed (for me failing is scoring more than one standard deviation below the mean). I really freaked out. I began to worry about passing the qualifier in June. Then I realized June is 7 months away and I haven’t even been a PhD student for 2 months. I’ve learned alot from this “failure”:

1. Even the best students fail. I think in my case it is due to improper study strategies. Now that I’ve seen a test, I know what to expect.

2. After talking to some second years, it is really hard to do well before the third quarter. (Remember I am taking a class with more mathematically prepared students from more rigorous programs).

3. Freaking out does no good. It’s a waste of time. I think I’ve wasted a good 10 hours thinking I’m some imposter, but …

4. I am not alone in my feelings.

So tomorrow I’m waking up early heading to starbucks and studying my ass off. Hopefully things will look better from here on!

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