Stream of Conciousness/Updates

Hello! I’m still alive! I burned myself today with boiling water. I do that just about every time I boil water. I just thought I’d share because you’d think I’d learn, but nope. I burn my finger. THE SAME ONE. Every time.

I do not proof read my blog posts so I’m sure they are riddled with grammatical and punctuation errors.

School started a few weeks ago and it’s keeping me busy! It’s actually throwing my view of how intelligent I am out the window. Intelligent? Me? Pffft noooo. I feel so dumb and inadqeuate at times. But I hear these feelings are normal. The goal for me in my studies right now is to pass a Qualifier exam in June to continue my PhD studies. If I fail it, I can take it again in August. If I fail that I will be kicked out of the program. I’m super nervous about the Qualifier exam, but I know I can do it if I keep myself motivated. It’s just so disheartening at times since I feel so confused about a lot of the class materials. I wonder when I will feel better about it? Either way I have met some really awesome people and I’m started to “hang out” more and do things. I couldn’t do this last year since I was always sick.

Health. Things are still about the same. I’ve been started on the third (and hopefully last) round of steroids. I’ve gained 20lbs since I’ve started these steroid rounds. I’m still pretty “small” (someone told me: “I’m so glad I’m sitting next to another small person” when I was taking a flight recently which was pretty awesome!!) but I cannot afford another 20lb weight gain because I’m a few pounds shy of no longer being considered a “small” person (at least I think so).I think eventually I will need a second opinion. While I’m feeling better I still have no clue why when I do flare up not only do I have joint and muscle pain, but I have a lot of neurological symptoms as well. I get REALLY lethargic: I can sleep 24 hours straight, no joke. My muscles twitch and spasm and I get wicked headaches. My hair has fallen out and my mouth has broken out in sores. Also, for the past 5 years or so my kidneys have been in and out of wack. This all leads me to think I have Lupus. My rhuematologist has diagnosed all these symptoms as “Inflammatory Arthritis”. Although I often don’t think I’m open enough with the severity of my other symptoms.Since school has started I don’t really have the time or the money to go through another set of tests and to get this second opinion especially since I am on the same exact medications I would be if I were diagnosed with Lupus (and I’m feeling much better). The one good thing about NOT having an official Lupus diagnoses is that I shouldn’t have a hard time finding health insurance if need be. But still my gut tells me something more is wrong than “Inflammatory Arthritis”.

All those times I tried to start exercise programs I would just get sick. I guess I was still hoping that my sickness wasn’t really a sickness at all, and that I was just lazy. Well exercise obviously made me feel worse but now that I’m on the right cocktail of medications I think it’s safe for me to try an exercise program. I WANT TO LOSE THOSE 20LBS!!

I’m sneaking in this paragraph close to the end in hopes that any people who are easily offended don’t read this part. My friends always laugh at me and think I’m hilarious, but it’s rare that I’m actually attempting to be funny. It’s always baffled me, but I guess because I’m sort of witty/sarcastic and I’m probably saying things no one would dare say. Like I’ll say how much I want a dog, I am seriously thinking about getting one. But it has to be a small one because if it attacks me or a loved one, I want to be able to kick it across the room. I’m not joking. I’m sorry to all the dog lovers in the world. But I’m just being brutally honest. I would not harm a dog unless it was a danger though. Promise!

I can’t wait to share some of my musical accomplishments, but I need to get new batteries for my camera. The other one drains too quickly. Luckily my “arthritis” doesn’t interfere with my piano playing. I am also teaching a little boy how to play and I’m super excited, because his excitement reminds me of myself when I was his age. I’ve been debating whether or not I should teach him via the Suzuki approach (pretty much playing by ear) or the standard approach (with sheet music). I think I will be going with a modified Suzuki approach since he doesn’t know how to read yet but we shall see. The official lessons will begin in November and I asked his parents to go over the first 7 letters of the alphabet, so my method of choice will be based on how much “reading” he learns.

Update

It’s been almost a month since my last post so I feel obligated to give an update to whomever cares

Health wise things are okay. I have been off of the steroids for almost two weeks and I have slowly felt the pain creep back up. My pain is no where near the pain levels I was experiencing before, but the pain is still there.  Today my pain is actually pretty significant for the first time in weeks so I’m wondering how I will feel tomorrow and thereafter.  I am planning on scheduling another rheumatologist appointment sometime next monday or tuesday.  I really do not want to go on another round of steriods because 2 weeks ago at the end of my steroid round, the scale read an all-time-high number.

School.  Classes haven’t started, but there is a review session for incoming PhD students. It’s pretty intense. I am at school from 9am-6pm and I am either in class/studying/working 95% of that time (yes even through lunch time).  I am putting in about 60 hours a week into school and this is before classes have started.  It’s hard work but I am pretty optimistic.  Last year I was really fatigued and had a lot of trouble focusing because I was always in pain. Now it’s the total opposite.  I do feel my energy levels are on the downward climb.  But still I am SO much better than I was!

Maybe…

Since my last post I’ve been doing a whole lot better.  I write down my pain levels and they have been consistently at a level of 0-2/10 every day for 8 out of the past 9 days. I can’t remember the last time I felt this good for this long.  I am incredibly happy about it…but somewhat in denial.  I keep thinking that maybe it’s a fluke. Maybe I just happen to feel better and it’s not the steroids working. Maybe there is nothing seriously wrong with me. Maybe my body is not attacking itself.  Maybe I won’t need to be on medication for the rest of my life to feel this good…

Prednisone Round II

So it’s my second round of prednisone and I knew right away that it wasn’t working as well as it had the first time.I’m still in quite a considerable amount of pain but it’s definitely better than before I started the steroids.  Before ,  on any given day,  my pain was about a 5-6/10 on average.  Currently my pain averages  to a 2/10 with “spikes” of pain up to 6.  I do have a lot more energy though.  I take an hour nap every day and sleep for about 6 hours every night. Before I was sleeping 8 hours at night and taking 3 hour naps. Even though I’m feeling better, I don’t want to be on prednisone any more. The long term side effects are no bueno. I think the plan now is to switch me over to a different drug called Plaquenil.  And while this is seemingly helping my physical symptoms, I’m still having some neurological symptoms .

My next rhuematologist appointment should be right before classes start. I want to ask for pain medications so I can get these “spikes” under control.  I’ve tried tylenol, but I might as well be taking a placebo. If I can get this pain under control I will feel much better starting an intensive PhD program.

Health Update

Seems like my blog is turning into a health blog, which is not really where I intended it to go.  I can’t express how hard it is to deal with a health issue without any close relatives or friends nearby for comfort. I feel like I’m going through this all alone.  I know in reality I’m not.  But it sure does feel like it. I think I might have a case of mild depression.  Dr. Appointment days especially get me down  Any other day I don’t really have to face my problems, but on the days I have to see a doctor, I do.   Today was a doctor appointment day.

So there are still no definite answers into why I feel so shitty, but at least I found a doctor who is  willing to look for one. I was forward to an opthamologist because I have pretty horrible eyesight.  My left eye is the worst of the two; it’s so bad I cannot read the first letter on the eye chart  (this is with glasses on).  Since the steroids helped my pain for a while, I have to start taking them again. Which is good because I would like pain relief again and I have been in some severe pain for the past week or so.

Officially Broke: How I Did It.

So I’m officially broke.

As in I have $0 to my name.

Here’s how it happened.  One of the main reasons why I was saving up money was for new apartment furniture (I still didn’t have a real bed, my couch was atrocious, etc.).   So when I finally had the time, I went out and bought a new bedroom set + a mattress ($1000) and a new sofa ($800).  I got tired of my crappy TV so I got a new one ($300).

Then I made a surprise trip to visit my dad for Father’s day not too long ago ($200).  That was nice because he was TOTALLY not expecting it. Then I bought another set of plane tickets home because they were cheap ($100).

I was also saving for a piano, I figured I’d utilize the practice rooms on campus until I graduate in 2015(ish). But then they came up with this rule that non-music majors can’t use the practice rooms so I had to lease one ($300).

Then I spent $200+ on various tests, medications, doctors appointments I’ve had over the past month.

And so I’m 100% broke.

But it’s all good it just means means I get to start back from square 1!

So here’s my new financial plan since I’ve met my other ones.

Europe Trip (next June): $3000 ~or $300/month (starting next month)
New Clothes (by September): $??? (however much I can save by September)
Coffee Table: $150 (the last big furniture  purchase I need to make)
Credit Card (by next month) : $1000  ( I want this paid off in full ASAP, I do not believe in being in debt when I don’t have to).

The financial goals will be a little harder to obtain over the next 3 months since my monthly salary has decreased by $300.  But it is feasible.  So my goal is to go back to living off of $1200/month until my pay increases again in October while meeting all these financial goals. According to mint.com my net value is $23.24 (which should go down when a few of more bills pop up for this month).

This should be interesting. Wish me luck!

I almost forgot…

What it felt like to be pain free… well I’m not 100% pain free but my usual 6-8/10 pain is probably a 2-3/10.  I can live with that.  It feels lovely.  It sucks that I have to take steroids to feel this way though.

So

The doctor…She was a weird lady. She didn’t indicate what she thought was “wrong” but I had to have more tests done and I’m on steroids.  Apparently my blood says that I have chronic inflammation.  I don’t really understand how important it is, but my numbers are suppose to be around 16, and it is 75. My white blood cell count is also up.  Also whatever you do DON’T GOOGLE YOUR BLOOD TESTS FOLKS! I read on google that having a number of 100+ is a sure sign that you have a very serious disease, and it may very well be cancer. And if it is cancer it’s probably metastasized (spread to other parts of your body).  I know my number wasn’t over 100 but 75 is close enough to make me think all sorts of horrible thoughts.  As much as I hate to be on steroids (because I’ll probably gain weight), I am happy that my pain may be under control

Hoping, Wishing, Praying

I hope tomorrow the specialist I am going to see is willing to listen.  I hope this doctor isn’t like the others telling me it’s “nothing” or “in my head”. I really really want this pain to go away.  I am just sad thinking about tomorrow.  I think I’m already preparing myself for disappointment  because that’s all I’ve known over the past 5 years.  5 years. I can’t believe it’s been so long. I’m tired of all this.

It’s Not in My Head

So…I know I said I’d find a doctor soon, and go and blah blah blah blah. But I didn’t. At least not until this week (Tuesday actually).  So I went, found a new doctor,  told them my symptoms, got some blood work done, and was expecting the same thing “nothing is wrong” blah blah blah. Well as soon as I got done with the doctors I began to feel like crap. I figured that was a good thing since I went to the doctors right before my symptoms started flaring up.  And Lo and behold my blood work was actually abnormal! Why on earth did it take 5+ years for my blood work to show something abnormal is beyond me. But I will go with it. So now I’m off to see a specialist.

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