BYDLS is still out!

Since BYDLS is out for a while, I'm going to chronicle what I would put on there. Just a couple things right now. My twitter account is @katielynnsarah. Follow me and tweet me who you are and what your username was. I want us to be able to converse through this or twitter. The holidays are a hard time for many spoonies. We can get through this! Tweet me the good days and the bad. Send out a tweet asking several people how they are doing. Email me at Peanutbuttercupsrock@gmail.com. Send me your name. Maybe we can make a "database" of support and email each other.

My personal struggle right now is school. I'm on homebound to give physical therapy a chance to work. I'm doing an AP class homebound. I'm just really stressed and having trouble getting stuff from some teachers. Ugh.

BYDLS

Does anybody know what happened to BYDLS?

BYDLS downtime

FYI to those who read this blog and are on BYDLS, the site is down now. Apparently we grew too much, and the web hosting company can't handle us. Christine is working on getting new web hosts. Monitor the Facebook page for new updates!

Ugh, again?!?!?!?!?

Okay, so I'm just getting off of a URI, and of course I now have missed my first day of school for pain. It is the fifth day in total. I miss school! I miss my first hour teacher, and the way he teaches, the subject, everything. I miss my second hour, the amazingness that is AP English. I don't miss my credit recovery math, but I like the teacher. I miss orchestra, the being a first violin, maybe learning bass. I miss med dental, and the love of medicine. I miss physiology, and learning stuff in that class. I can barely read with my left eye. I hate this.

Becoming not stupid

Okay, so I am an incurable procrastinator. School starts in a week, still have approximately half a crapload (yes, that is a unit of measure) of work to do. I can get it done. It's for English class.

This semester I'm in psychology, AP English, Algebra II, Orchestra, Medical Dental (medical science class), and Physiology. Pretty easy and working schedule.

Meds adjusted, doing good but I'm flaring a little. Insomnia from it. Maybe I can get some of that crap done. Who knows? All I know is that this year I will prove that I am sick, not stupid. Then in college I will prove that I am sick, not stupid. I know I am sick, not stupid. I'm working on proving that to the world.

Oh yeah, and a part time job would be nice too. I'm thinking people greeter. Somewhere that I can go in my wheelchair at. Downside: I am petrified of running into family that are unsupportive.

I just can't build it today, I'm just too tired

Words of wisdom from my favorite news anchor and politician, Stephen Colbert. It is sad that I get my news from there, but I love him.

That being said (has nothing to do with this), am I the only one who doesn't like talking politics/ religion/ issues/ pop culture because 9 times out of 10 my odd viewpoint doesn't get respected. I was asked to sign a petition protesting the recall of a school newspaper because of an article, and was called homophobic when I wanted to see the article first. Another thing, if someone doesn't understand my viewpoint, instead of asking me, they ask my mom to clarify. Which she can't do, since she isn't me, and her attempts usually just make me look stupider, since I interject and they interject in my explanation. I see a hole in someone's argument, which is like shooting themselves in the foot credibility wise, and jump into it, and never get to finish what I was saying. People don't understand why I talk so loudly. Well:
1) my dad is hard of hearing, and sometimes you have to yell to his face for him to hear you
2) if I want to talk, I have to talk over someone, since people talk over me. Its just the dynamic we speak in on my dad's side of the family. Whomever talks the loudest gets to speak. On my mom's side it's the second anyone under 20 talks, the subject is immediately changed. Sometimes we get lucky and my grandma will make people listen. I was saying something about the Casey Anthony trial the other day, and all I was saying was that it is all a huge mess that is near impossible to understand, and that the most fair outcome would be a hung jury so it could be tried again. it turned into me getting nothing in edgewise, and me ultimately just leaving. Nobody understanding a damn thing I said.
3) honestly, it's a free country and I can talk as loudly as I want to. I'm not screaming. If you don't like it, don't listen.

Oh, yeah and being harassed is totally my fault for misinterpreting. Yeah. My fault. I'm sick and tired of dealing with this bullshit.

No closer in close to 3 months

All we have learned is that I am...wait for it...perfectly fine. Except that I'm overweight. Way to go! Do you think we don't own a scale, or do you think I am just stupid? I mean really. Do you think that we aren't already trying to address that, or are we just going on as normal? We are waiting for my urine to turn bright red again. Thing is, it's hard to tell the color by a small sample diluted down so I can find a bright red sample. It's crazy. We are "treating me symptomatically" but my symptoms are being treated in a really crappy fashion. Day by day the pain isn't remotely close to nothing. About a 5 every day. Down from 8. Definately not around acceptable. Sleep isn't there either, but it comes with the pain. A month ago I was under the direct care of 4 doctors. After follow ups, I am now under the care of 2. One I have another appt with next week, and he will be gone, providing everything is normal; since it's cardiology, I hope they would have told us by now if it wasn't. The second is the one who is "treating me symptomatically" and I think he has no other ideas at all.

Me Caveman

I apologize in advance for the caveman like sentince structure.

Okay, so now my Neurontin is going up. It's creating the same ol insomnia that we all know and love. Hopefully it will fix pain better. Last night, I was up till 6 am. When my mom's alarm went off. I worked for most of that time. Got loads of stuff done.

The electrodes from my heart monitor decided to cut my stomach, so I get to deal with that one now. It's pretty deep for coming from foam and paper. I got the sensitive skin electrodes, but I still take them off and clean the skin every day to prevent irritation. If they need to send me more, then they do.

I think I can sleep now. Night.

Fun days

So it's been a long time since my last entry, and a lot has changed. Saw a geneticist. Saw my rheumy and had an MRI (I'll let you guess the outcome of that one). Saw a cardiologist. Saw an endocrinologist. Ruled out loads of diseases (lupus, Wilson's, etc.) went on heart monitor (I hate electrodes.) Oh, yeah, and the wonderful weather decided to build up to a huge thunderstorm. I hate them. So much. They make me hurt all over!

Took AP tests, think I did okay.

Late night comedy

Ive been watching more than I want to. Which means, more pain caused insomnia! Of course. Getting more blood drawn, and if it's normal, then I'll get an MRI of some muscles to see inflammation, so we can find a good place for a muscle biopsy. Not endocrine. My doctor actually thanked me when I told him the psychiatrist said it wasn't psychiatric. So, sounds like we may be onto something!

Update after endocrinologist

I saw my endo last Friday, and they screened me for Cushing's by having me do a 24 hour urine test. It just so happened my brother was at a science Olympiad competition the next day, so it was just me all day. So I laid around the house, and collected my pee in a jug. Lovely. I didn't want to go because it would be a long day and I wouldn't like seeing former teammates compete, me not being able to be there because of this demon that lives inside of me. The demon that is the undiagnosed condition.

So, I'm flaring this week. Printed off countdown banners last Sunday for the tax office I help my dad at on Sundays, and all of that (an atypical amount of work. Usually it's just answer phones and do homework for 5 hours) I think did it. So I'll just chill here and watch South Park. I love that show. Kyle just punched Cartman's arm and he ran off screaming. That reminds me of when people poke my arm.

At least spring break is next week. I asked my mom if we could go down to Florida, get wasted, then arrested and her response was "you don't have enough energy". Typical response. In case the simple sentince structure is misleading you, I'm on Skelaxin.

Response to Feisty Kitten

This is in response to Feisty Kitten.

I get the "blood is thicker than water" thing. Although what my aunt did to me a few years ago was not on the same planet as almost killing my mom, it is still traumatizing to me.

A few years ago, I got very sick. 2 weeks of a 104 degree fever, followed by two weeks of vomiting my guts out. During the fevers, my aunt would call my mom and tell her to send me to school, that I was exaggerating and faking. One- how the hell do you fake a 104 degree fever and two- they won't let you to school with a fever. We tried to explain two to her, but she couldn't get it through her thick head. Then, in the second week of vomiting, she called and talked to ME. She asked me how I felt, and my response was "pretty crappy". This sent her on a tirade of "you will die if you think like that". To this day, every time somebody asks how I feel, that scenario runs through my head, and it makes me say "fine" or "good" every time. Even with non-judgmental people. My parents get an honest answer. Nobody else does. I think I can forgive her for what she did, but she has harassed me off of facebook, which was my decision. I unfriended and blocked her like my dad said when she began harassing my parents and telling them that they were teaching me to run away when times get tough (they taught me not to take shit from others). Now, I have loads of relatives I cannot contact. Friends I can't contact. All because she couldn't stop harassing me. And she guilted my grandmother into taking responsibility for her actions. She clearly sees no boundaries. My dad and his brother think before speaking. My dads sister and brother speak, then might think. With the aunt in question, I dont think she ever thinks. Since I got sick, FB has been my social lifeline. Now I have to recede into my own type of hiding. I saw her last Sunday. I would not hug her. I would not talk to her. I just glared. I might be able to forgive. It's going to be on my own schedule, though. Yes she is family. I'm not taking this from anybody though. She has never had the courage to apologize to my face for all she has done. She just keeps doing it. Hopefully by Easter things will calm down. I'm not doing this anymore just because she is family.

New life- mini update

So I see an endocrinologist at the end of the month. I also see my PCP tomorrow to see if he can adjust my pain meds. I am having issues typing and I think my neurontin is becoming less effective.

Break

Since we are on break this week and I don't have enough ways to waste my time stuff to do, I will be coding a layout for this blog (nudges at centered blog title). Be warned: let me know about broken links, messed up looking stuff, if your computer bursts into flames while trying to open it, stuff like that. My coding skills are amazing horrible, and this is my first time doing a layout using CSS almost exclusively, with little HTML. Also, I am not responsible if your computer bursts into flames when opening my blog, wince there was probably an issue with your computer. Lol!

What you are saying is reasonable

My valentines day was actually quite nice. I saw a new rheumatologist. He came highly recommended and I can tell why! He listened to my ENTIRE medical history! By the time I get to the severity of pain I usually get "psych case. Go see a psychiatrist." (which I've done by the way) but he said something to me after I got through my entire history that nobody, even the best doctors I've seen, have said. He looked me straight in the eye and said "what you are saying is perfectly reasonable". When doing the physical exam, he took one look at the big, purple stretch marks on my arms and abdomen and told me that was abnormal and that we need to see an endocrinologist. We've mentioned this to doctors before, and me being overweight they assume it is from that. I've had these all my life. I haven't been overweight all my life. We are waiting for the endocrinologist to call back, but I feel so good now!

My personal suspicion is Cushing's. it makes sense. So happy!

Just a few more days!

I have just a few more days until I am going to see my new rheumatologist! I'm so excited, and really just want to go to try and figure out what's wrong with me!

I don't know how many people reading this have ever read Self-Reliance by Ralph Waldo Emerson, but I was reading it for English class the other day (If you have never seen thick language since your high school English class, this essay would not be for you. I had to read it twice to get all of the answers to the companion worksheet) and I really found that it sort of has parts that capture spoonie life, as well as my life. He says that it is not bad to be misunderstood, as a all great and pure minds are. I think all of us undiagnosed find that we are very misunderstood. I am misunderstood in my pain. I have found many doctors who misunderstand me. The brain fog make people misunderstand me (my English teacher asked me where we left off in the movie we were watching with the sub, and my response was "where the guy with the beard's wife got arrested", so the brain fog isn't that fun.) and totally take stuff I say out of context. Parts of that essay would make you think that Emerson was in our minds the whole time.

Anyway, off to do some homework. Mini flare up today, but I have to get something done!

It happened

This morning, I noticed the first tell-tale sign of lupus. I think I have the butterfly rash. It's bittersweet. On one hand, I may FINALLY have the answer. On the other, I would have lupus. I guess it isn't the worst think you could get, but this is just what I have. I have moved to the point where I have no choice but to accept it. I start school again next week! I am so happy, especially since the first two hours are an easy, self-paced math class because I couldnt get my credit last semester. I got a new hairdryer too. Going to try it later. I just want to look good enough at school, especially since I have this rash now, so that I don't get as many questions. I won't get made fun of, but I still don't feel like explaining my life's story to everyone on the street. To complecate matters, I need to have the school administration approve my medication to be carried with me. If not, I will be demanding that they bring it to me, I can't make a special trip office to office to take my pills! It's not a narcotic. It's not a controlled substance (I understand why they won't let me take lyrica with me, it's a class IV controlled substance or something like that, but I'm off lyrica!) and kids take motrin with them everywhere all the time!

Teach or be Taught

I think I am beginning to come to terms with what my illness entails. 9 months of getting worse, sleeping on a couch because I can't do stairs, and I am learning what I can and can't do. What is good and what is bad.

Like many diseases before this, I think I'm finding something I may have. Churg-Strauss Syndrome. I'm still learning about it, but the most recent Mystery Diagnosis made me aware of this illness. Rare, autoimmune, causes pain, not too specific of a test for it, sounds about perfect. Clearly by now,it is not common. It causes pain. It seems autoimmune. I've had every test known to man.

Anyway, got a letter from Rochester College in New York, and now, I think it is a first choice college. I'm just applying for every scholarship known to man, and several colleges. If I end up getting college down in price, straight to a 4 year college it is. If not, 2 years community college, then a transfer. I still want to become a doctor. Help people like me not have to go through this. Some aren't finding that out now, but the way I see it, if I make it through teaching myself a semester of two AP classes, I can go to college being taught this stuff by a proffessor. It will be easier to be taught stuff then to teach myself stuff.

I am getting closer. I am going as fast as possible on my biology, and am reading lots of books for English. Government will happen, not as fast as my other stuff though.

2 weeks till I go back part time. I can't wait! I'm even going to try to go to Snowcoming in February.

New year, yay.

Well, 2011 started today and honestly, I wasn't as excited as I usually am. I am always super excited for Thanksgiving and Christmas, but it just wasn't the same. I liked the stuff I got, it just didn't excite me. I dread seeing some family because they really like trying to tell me what I need to do. There is a difference between stating an opinion, and being annoying. This is public, so I really don't want to rant here, but it still drives me insane. Another party Saturday, which I'm really dreading.