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.