Losing hope after a long week...

Part of the reason I havn't been posting very often lately is that I've just been trying to cope with different things going on and I havn't wanted my blog to become a depressing place.

I've realized that that's the point of a blog though, to not have to hold things back when you don't know where else to turn.

So here goes..

I'm losing Hope.

A few examples of why?

For starters..

A week ago, thursday morning I had my Theatre 2 class. I walked into the Auditorium (where the class takes place) at 9:01. Now you should know that I'm not one to be late but I live a half hour away from the school and with all the construction going on there's random days where there's more traffic. So, the class started at 9 and walking in at 9:01 the teacher shouts out, "You're late, take out your homework, write late at the top of it and grade your own. You're also getting no credit for it." (Note that this is a teacher who's never cared when people walk in 45 minutes late to class.) At this point I was upset after I'd spent hours on the homework and even taken it to the teacher the class before to clarify parts of the homework. (I also got 100% on it along with the extra credit portion of it.)

Then he announced that we'd be doing a scene with a partner, rehearsing 2 hours outside of class and then preforming it the following class. He told everyone to stand up that had recieved 100% on the test the day before (which I had) and then who got 100% on the homework. About half the class stood up. He said that those people got to choose their partners first so they knew that they'd be able to rely on people who also work hard. Everyone started pairing up.

Suddenly I realized EVERYONE in the class was paired up but me. The teacher stuck me with a group of two other people and told them that I'd do whatever they wanted me to and I'd work with their scheduale.

20 minutes later after having all of the ideas I gave shot down and called dumb everyone had their lines memorized except for me because my "partners" wouldn't include me. Then, my "partners" flat out said they didn't want to work with me and that they were angry that the teacher was making them. Literally in those words. (Note, this is in a COLLEGE class, one of these women was around 19 and the other was around 30-Also, they'd not said much to me, nor had they seen me act so it couldn't have been about that.)

I was really hurt. These were two people in the class that I thought were really nice and had been excited that if I had to be stuck into a group that these were the people I'd been stuck with.

I told the teacher that they really didn't want to work with me so after some negotiating with him, he allowed me to work with another group. In the end that group worked out well and the performance wen amazingly. We even had someone rate our scene as their favorite out of the 20-something that were preformed in class.

The point is that I thought we were past that. That was a big reason why I love college.

The other thing that upset me about the situation was the fact that after it happened I really needed someone to be there for me but when thinking which of my friends I could call that would be there for me, I couldn't think of any. Then when I called one anyways, they listened, said "okay" and then started in talking about themselves.

Secondly, the next day I had an appointment with an infectious disease doctor.

I'd been waiting for this appt. for a few weeks. For those who are new to my journey, I've now had a staph infection for 6 weeks now. I've been on a couple of antibiotics that hadn't done anything and it was continuing to spread. I've also been getting strange rashes all over my arms and legs quite often and the joints in my hands are incredibly swollen and developing blister type things on them.

My primary care doctor has given up on me because I'm not an open and shut case. She's an amazing doctor but at this point she's frustrated past her limit because she doesn't know what to do with me.

So this Infectious disease doctor saw me and thought that the lesions all over my body didn't look like a staph infection. He thinks it's an auto-immune disease, he's not sure which one though. He said to stop the creams and hibiclens which weren't currently doing anything for me anyways. He was afraid of two things it could possibly be so he wanted me to be sent immediately down the hall to dermatology for the lesions to be biopsied.

I went down the hall and a second copayment later I had the dermatologist (and a second one who the first wanted a second opinion from) tell me they thought it was just a staph infection and to use the hibiclens and I'd be fine. No antibiotics or biopsy needed either.

After feeling as though I'd just been spun in a circle back to where I started I went back to the infectious disease dr.

After a teary explination to the doctor's asst. about what had just happened, being given two polar opposite directions to go, I was allowed to talk to him for a couple of minutes.

I told him what happened and he told me he'd just gotten off the phone with the dermatologist and that was not what had happened at all.

Mmhmm. Yeah.

The infectious disease doctor ordered a chest x-ray and a ton of blood tests. 3 hours, 13 vials of blood and an x-ray later I went home.

Then this week I found out the results came in but the results were sent back to my primary doctor.

She got angry when I emailed her for them (probably because she thought she'd successfully passed my case onto someone else.)

She said the results were normal.

Back to square one...again.

Today, after being on the phone with the doctor's office for a couple hours, a phone appt. was made for later in the day.

The doctor called an hour and a half after the appt. but at least I was able to talk to him and tell him how frustrated I was and that I needed to do something because what I'm doing isn't working.

He confirmed that the results of the tests were normal but that a culture that had been done confirmed that I had a rare kind of staph.

Which brings me to another highlight of my week..

I'm getting a PICC line put in hopefully as soon as Tuesday and after a 7-day round of IV antibiotics(which may or may not work), I'm having a skin biopsy done to see if they can figure out if there are any signs of something autoimmune going on with the lesions. Because what's going on doesn't make sense to them and nothing is adding up.

The only thing that's kept up my Hope right now is what happened to my uncle the other day.

He narrowly escaped death.

There was blood in his stool and the next day he had to call my aunt to pick him up at work. He was almost too weak to even make it to the car.

He was taken to the ER where they found he was bleeding internally.

After a bunch of tests and a surgery they found out he had something very rare between his stomach and his intestines. It was like an ulcer but while an ulcer goes inside this thing went outwards. It caused a blood vessel or artery to burst that mad it so he was bleeding directly from his heart.

They were able to clamp the thing and then watch him closely in the ICU for a couple days.

He's still in the hospital but no longer in Intensive Care and looks as though he's going to be okay.

Apparently, if he hadn't come in, the doctors don't think he would have made it through the night.

All in all, it's been a hard week. It made me realize how lonely I really am right now. I have many friends that I'm there for all the time but realized that I have none that are willing to be there for me when I'm really needing someone to lean on. Also, still being new to the town, not knowing anyone around here, I just felt more isolated and down then I have in a long time.

The illnesses that plague me are invisible. Most of them can't be seen. Just by looking at me, I look healthy.

It's hard for people to understand how to be friends with me when I can't often make plans ahead of time because when I do, I have to cancel them at the last minute because I'm in so much pain I can't move or get out of bed.

It's hard not being able to keep up with my peers. For example, I almost pass out when I climb a flight of stairs and my pulse reaches close to 200 beats per minute and it won't go back down to normal for a half hour or so.

It's hard for me to not be able to dance because I feel so horrible all the time and I get incredibly dizzy, falling over and almost passing out when I exercise (and sometimes even when I'm not exercising).

It's hard to remember what having a social life feels like.

It's hard to forget the name of my favorite song, or forget the question right after a teacher calls on me due to "brain fog".

It's hard to realize I may never be "normal" again and to accept this as my life.

It's hard clinging onto Hope when that's all that's left.

It's hard.