Summer Break!

I made it through the first two weeks of training at the new job. It was a lot of work and a lot of hours. I'm looking forward to the paycheck :) Now the kids are on a week long break for Independence Day. I NEEDED this break. The first week of training I just observed the interactions between teachers and students and the second week I took one student by myself. Next week I will have my whole group (3-4 students) along with staff support and the fourth week I am on my own! A little bit nervous. The kids have some very challenging behaviors including extreme aggressiveness. I had to learn how to protect myself from physical attacks while not harming the students. Also, many of the kids are non-verbal, anxiety ridden, have obsessive tendencies and panic attacks/tantrums. I can't wait until I see that I have made a difference in the lives of these kids.

I have an appointment with a new primary care doctor next Friday and made an appointment to see an orthopedic surgeon in early August. I need to schedule appointments with my rheumatologist and endometriosis doctors tomorrow. I'm interested to see what the orthopedic surgeon says. All the Internet based literature I have read just leaves me dreading the visit.

I am still taking Chemistry I and I am actually doing well in it. That's a surprise. However, I should also say that the professor is horrible and has told us blatantly wrong information at times in lab which has kept us there longer because we had to fix HER mistakes. I start Human Growth & Development next month, but I am not worried about the class. Next semester I am taking Chemistry II and Anatomy & Physiology I. I think I will really like A&P.

That's it for now and I hope everyone is enjoying their summer so far!

I. AM. DONE.

So the "college" chapter of my life has officially come to a close. I checked my final grades this morning and was pleased with what I saw. So, now what?

I have signed up for two classes this summer. One starts on May 31 and is at 8 a.m. for 10 weeks through the summer. It is general chemistry and hopefully since I will have a little bit more time to focus on it, it will not be as stressful. The second starts on July 11 and is called Human Growth and Development. It is online so hopefully it will not be too bad. It is a psychology class, and since I just got an entire bachelor's degree in psychology, I do not expect it to be too hard.

I have had a few job interviews and I am keeping my options open. I am writing this from vacation in San Francisco and I will have to evaluate the pros and cons of each job when I return. I basically have an offer for one job, but I do not know if it is something I want.

Speaking of San Francisco, I love it here! I fell in love with Oakland yesterday. It is exactly the type of city I want for my 20s. I texted my dad last night to tell him I will be relocating and he said "you want to be in earthquake central". Ah yes. I love California (now that I have been to both north and south) but those pesky earthquakes.

Graduating from college is so interesting. I'm inundated with so many different feelings about it. Nervous, excited, happy, scared. My FUTURE is ahead of me. It's really interesting.

My lupus is pretty stable. There was some evidence of increased activity in my last blood tests, but I'm not that worried. I also was diagnosed with TMJ so I need to see a dentist to help me deal with that.

Well, hopefully I will have some more time to update the blog. I think I know what to rename it since I am no longer a college student and I will be playing around with formats and what not.

Thanks for hanging in there with me.

I'm So Sorry Blog, I Haven't Forgotten You

Unfortunately, things have not slowed down for me. Just this week I have 4 exams and a paper. And all my classes are pretty difficult. I'm doing everything I can to balance school and work and keep my GPA. Which leads me to another problem: work. I'm not having enough time to do both school and work. My family has realized this and been EXTREMELY generous and supportive over the last few days and asked me to quit one of my jobs. Which I would love to do, but it would leave my employers in a tough situation. So I'm not sure what to do about that.

Which leads me to my family. They have shown me just how truly blessed I am over the past few days. I don't know what I would do without them.

Anyway, lupus-wise I am so-so. Today I am dealing with a very swollen and painful ankle which is disappointing because I normally don't have problems with my ankles. My rheumatologist has also mentioned starting physical therapy again for my knees because the arthritis is in my ligaments and tendons and I can't extend my knees out at all. I also had a bunch of endocrine tests done because my calcium levels tend to be high, my vitamin D levels tend to be low and I'm getting kidney stones a lot more than a person my age should get.

Stress, Lupus and a Prednisone Taper

I'm about ready to shut my brain off for a while. This semester has been really taking a toll on me. Even though I was taking six classes and working both jobs last semester, it was not nearly this bad. I am completely lacking enough time to get my work done and take care of myself. Throw in a rapid taper from 25mg of prednisone to 10mg, and you have a pretty bad combination. I didn't quite realize how much good the prednisone was doing until now. I came home from work on Sunday and my joints were screaming at me.

I had a talk with my dad this afternoon and he told me that he would help me financially if I reduced my work hours. That is very nice of him but I don't want that to happen. He helps me out now and I know its a lot for him.

I think my schedule even for a person who is not sick is a lot. I don't want to reduce my hours or slow my prednisone taper so I need to figure out something.

Thoughts On My First Week

It's gonna be crazy. Tuesday, Wednesday and Thursday are going to be marathons. On Tuesday I have class 8-10:45 and then again 1-6, on Wednesday I work 10-1, have class 2:30-3:20 and then work again 4-8 and Thursday I have class 8-4. Whew. Mondays I work in the morning and have one class in the afternoon and on Friday I just work in the morning.

I have already worn myself a little ragged and I am 3 days in. I was exhausted and in pain by the end of today but hopefully that is just my body trying to get readjusted. And also for some reason sitting in the desks is taking a toll on my hips, but I hope that is just temporary too. I do not want to have to walk around with a cushion. In fact, I don't think that I would. I would probably just grin and bear it.

My roommate situation is going well. There are only three instead of four of us in the apartment right now and both girls are pretty quiet. I haven't interacted with them much and I do not think the other two have even met each other.

Anyway, I hope everyone has a great weekend!

Medicine, Medicine, Medicine

I got to see another rheumatologist in the clinic today and got a huge overhaul of my current lupus medications. She switched me from Plaquenil to another medicine called chloroquine that hopefully I can tolerate better. She almost bumped me up to 30 mg of prednisone, but we decided to keep it at 25 mg and split it so I am taking 15 mg in the morning and 10 mg in the afternoon. Then we also decided that I should start taking Nexium twice a day instead of once to try to quiet my stomach issues. Also, once my tolerance, or lack of tolerance, for chloroquine has been established, I am to go up to 3000 mg of Cellcept. And we added in Naproxen. That is so much for me to wrap my head around and I really HATE being on all these immunosuppressives. What am I doing to my body? What is my risk of cancer? Infection? So much to think about.

My final paper for my last summer class is due by 8pm tonight and I am almost done with it. I just have to finish the conclusion and then proofread. At least that will be done. Also, my wisdom tooth surgery is scheduled for 3pm tomorrow afternoon. I will leave straight from work and hopefully will be able to change out of my work clothes into something more comfortable and less covered in mayonnaise (ewwww) and tomatoes. The surgery lasts about an hour I hear so hopefully we can be back on the road home by 4:30, pick up my medicine at a pharmacy out there and be home by 7pm. We'll see.

I also have a show to go to for my internship tonight, but since I have to be up at 5:30 am for work, I am only going to stay a couple hours. I really do not want to go as I am exhausted and just want to take a nap. But I said I would be there so I will go.

I will post again after I have this dreaded wisdom tooth surgery. I have had three surgeries on my stomach and the anxiety they produced was much less. I don't know why I am such a wimp about my mouth.

To Tell or Not to Tell

Since I started working at the bakery my joints have gone downhill. My hands start to swell without fail and lugging gallons of coffee or pickles or whatever else up the stairs many times a day does nothing to help my knees and hips. Just about every joint is affected in some way. It slows me down and the pain makes me foggier that I already would be. I think this leads to people getting frustrated that I am not moving that fast but I can't help it. Nobody has said anything to me its just a feeling I get.

I have not told anybody at the bakery about my lupus. I will only be working there until the beginning of September and I just feel weird telling people. I have had so many different reactions when I have told people ranging from apathy to over concern. I don't want to be treated differently but I want people to understand that I have to do things my own way and sometimes at a different pace. What is efficient to some people (like carrying many different coffee pots down to be washed) is not practical for me. In the coffee pot instance, I may not be able to grip the pots correctly to carry them all at once or my wrists might be swelling so I can't support the weight. So this leads to two trips for which I get silent looks about.

I only have a few more weeks at this job so I am hoping I can just stick it out. But I don't want to burn bridges in case I need the job in the future. So maybe I will tell my manager about it. I am not trying to be inefficient but I also need to pay attention to my body.

A Year Older

Well, my birthday was Aug 1 so I am now 22 years old. Geez, I feel like I am 16. I am still sometimes amazed that I am old enough to get behind the wheel of a car.

I'm enjoying work at the bakery but it is very, very hard on my joints. The past few days have been particularly rough. I worked 9-2:15 yesterday and then I had to take the train back home, change, and go run around to three different computer stores to try to get something for my printer. Then I went back home and almost immediately went back out to go to a concert by the Goo Goo Dolls. I got home around 12 but had trouble falling asleep. So I did not get to sleep until around 3 in the morning and I had to get up at 5:30 to work 7-2. Needless to say I am not in the best shape right now. My joints are screaming at me.

I am supposed to be on 20mg of prednisone but I am only taking 10. My face started to fill out and I just hate the stuff. I will be on it until I go back to school at least.

My classes are going well. Only a few more weeks though until I move back to school.

And because they are wonderful, here is a video by the Goo Goo Dolls! (It won't let me embed)

Some Good and Some Bad

First for the good news: I got a paying job! It's about time! It's at this little neighborbood bakery about a 30 minute train ride from me.

Now, for the bad: I have gone on the dreaded prednisone. This swelling around my lungs is just not going down and its very painful and annoying. I knew it was going to happen when I went in there, but I am still extremely disappointed.

That's all for now. I'm still doing this ridiculous class so I need to continue my work on that especially since I will now have an extra thing to do during the day!

Is This What ENERGY Feels Like?

Today has been a busy day. I woke up and logged onto my school account and had a message from Financial Aid saying they needed a whole lot more information to process my file for next year. Fine. So I got up and went over to the building where Fin Aid is housed (about a 20 minute walk, in the sun and on a fairly warm day). After I squared them away, I went to Health Services because I left my lens prescription there the other day (hello bifocals!). Then I realized it had been a month since I had my blood tests done, so I went and drove to my doctors office about 25 minutes away, got my blood tests done and drove back. I barely got back in time to go to work, so I parked my car, ran up to my room to drop off the prescriptions I had picked up from CVS, and ran back out to catch the bus to work. The bus didn't come, so I walked to another street and caught a bus there. I made it to work with 1 minute to spare. At this point it is 2 in the afternoon and I have not had time to eat. So I finish up some paperwork and send some emails so that my boss will be set until another assistant comes in during the summer. I then go to the other place where I work because I am SO HUNGRY. So I pick up something to eat and go back to my apartment. My roommate tells me the second that I get in that the person who was supposed to come to do her hair for Commencement Ball did not arrive and would I help her? I told her I would but I had to eat. While I was eating, the person called so I was off the hook. I then decide to watch some TV, but after a little while I got bored and called a friend. We went to the movies and saw Iron Man 2 (amazing!!!) and I finally get in around 12:45. Whew!

Is this what it feels like to have some energy? Doing even half of these things would have wiped me out just a few weeks ago. I still don't want to jinx the CellCept, but maybe, possibly, could it be that this is why I am feeling so much better? I am reluctant to say anything because things change so dramatically with me so quickly, but hopefully this is something that will last.

Time

I am lacking in it. I'm feeling overwhelmed with school, work and other stuff going on with friends and family. I can't wait until summer, even though I will be working at the place I did my internship last summer, hopefully working and taking two classes. I just want a break.

I have been reading other blogs recently and a lot of them are talking about taking time out for yourself and relaxing. I can't seem to do that. Money is a serious issue and I can't just stop working. And the semester is winding down, so I can't ask for extensions without getting more stressed out later. I almost did not go to work today, but then I thought about my paycheck and went anyway. One of these days I really will relax.

Where Has All the Money Gone?

This is another post about money, or my lack of it. My car insurance was cancelled today because neither me nor my dad can pay it. I am hoping to get it reinstated soon, but who knows. I rely on my car a lot. I was planning on using it today, but then I got the call. I also got prescribed two medicines today: Flovent and Albuterol for coughing fits I have been having at night. I probably will not fill them because I don't want to pay for them. I also need to renew my parking permit for the 2010-2011 school year, but it is $275 and since I don't even have enough to pay my car insurance that's not going to happen. So I will have to go back on the waiting list and wait for a spot to open up again like I did this semester.

I am thinking of applying for a third job. It is pretty simple, answering calls from home for paid advertisements and the like. It is not an extraordinary amount of money, but it would help of course.

Anyway, I have so much work to get done. I have an annotated bibliography due tomorrow for Writing as Communication so I should get back to that.

Too Much

Today was a pretty easy day. I only had one class in the morning and then I went to work in afternoon. Unfortunately, I had to carry a couple heavy boxes back and forth from my office to the Concert Hall and my wrist has rebelled against me ever since. I noticed while holding the box that I could not grip it and my hand kept slipping. I thought that was weird but didn't think about it too much until I tried to open the door to the building where the Concert Hall is and I couldn't grip the handle. When I finally got back to the office I couldn't even take the cap off a pen. It feels incredibly weak. It has gotten better but I still can't make a fist or grip things tightly. I don't know if I hurt it carrying the boxes or what. I was going to go over my aunt's house today but I only managed to drive down the street until I realized I shouldn't continue because I could not properly grip the steering wheel. Luckily I see my rheumatologist tomorrow and hopefully I can drive there in the morning.

I only have one midterm and it is tomorrow for my New Media class. It is full of concepts that I have no familiarity with so I am nervous. But after that I only have a Spanish homework, quiz and a "pitch" for my communication case study and I am on Spring break. I am looking forward to noon on Friday so much.

First Day at My New Job

I worked for the first time at my new job today. I got into the swing of things pretty quickly, so that was nice. The only thing is that I spent 8 hours, pretty much straight, on my feet. They hurt a lot now. I'm laying in bed and have very little intention of leaving it right now.

I have two oral tests tomorrow, one is Spanish and one in psychology. My partner for Spanish and I are working out our script via email. I am so happy she agreed to this as I really don't think I could get out to the library or any other place tonight. It hurts to even sit in my chair.

I am concerned about feeling this was as this is something I have to go every week. Next week I will be trained to work the cash register so hopefully I can work on that during my shifts so I can sit down.

I get my blood test results soon and I also see the doctor on Tuesday for this continued bleeding. Hopefully I can sort everything out.

It Had to Be Done...

Just a quick update because I have two exams in Plagues and Media Programming tomorrow and have not really studied very much for either. I took another job today because money is ridiculously tight. I am going to be working at one of the eateries on campus. One of my roommates got the job for me and I am so thankful to her for that. It is only one day a week, Sunday, from 8 am-4 pm. Unfortunately it makes going home harder, but I think I can manage.

I also was told today that I could reduce my Imuran dosage from 250 mg to 200 mg today to see if it my hair stops falling out. I am under strict orders to call them if I feel any symptoms indicative of a problem. Hopefully that won't happen because I like my hair and I am nervous to try any other kind of medication.

That's it for now! I hope everyone has a good week!

Sore Throats Are Not Fun

Went to the walk-in clinic today because I have had a sore throat for a few days. I got my blood tests back and my neutrophil count was the lowest it has ever been, so I scared myself into going. Everything looks fine with my throat but they did let me know I should be careful about a flu going around campus.

I am so happy it is the weekend. Everything has stressed me out this week: work, school, health, money. I'm almost considering quitting my job because it is unnescessarily stressful. But I need the money and it does relate to what I want to do. Also, I don't want to consider myself a "quitter". I can do the job. It's just one of the girls I work with is horrible, disrespectful, condescending and way too uptight. She makes working there miserable.

My migraines and joint pain have been pretty terrible lately also. Part of the reason is probably because I have had to run all over campus this week for work. I need to talk to them about that because I can't keep doing that. On Wedensday my back and knees and ankles hurt so badly I couldn't get out of bed after work. Just putting my feet on the floor hurt. I considered staying home on Thursday because they still hurt really bad.

My dad is visiting my aunt and uncle a couple towns over so I will go over there to visit tomorrow morning. I can't wait to see my dad, even though I saw him last on Monday. I am such a daddy's girl :)

Now, Seriously...

So my health insurance covered my surgery. But they did not cover the anesthesia. The bill for that is more than I made in all of last year. It's ridiculous. I have no way to pay for it. And I do not think that it is going to get paid anytime soon. My financial situation is bad. My shoes have holes in them and I do not have enough money to replace them. My money normally goes to bills and prescriptions. It does not leave a lot left over. And I hold onto that money because I never know when something will come up. Another prescription might be added and I will need that money for the copay. Or my car, which is the only method I have to getting to my rheumatologist, will have some issue and I need the money to fix it.

I'm really scared about my financial future. I am 21 years old. I have school loans to think about. I am not in debt because I spent too much on credit cards like a lot of people my age, but because I have a chronic illness that has required multiple, expensive interventions. I should not have to worry about this. My biggest concern about graduating is finding a way to pay off this bedt and having health insurance. I would love to go to graduate school. I will have health insurance then, but I will also have more student loans. There really is no way to win.

Speaking of health interventions, I am really sick of being sick right now. I can't seem to catch a break. I've had mouth sores the past few days. Now my throat hurts and I can't tell if it is because I have mouth sores on the back of my tongue or its a real sore throat. One of my apartment-mates is sick with a cough and sore throat. My ears have started to itch and hurt as well.

And then there are the biweekly blood draws that I am really confused about. Some of them are fully covered by my insurance and some are not. I need to figure out why that it. I have paid off one bill, but I can't do anymore. I will need new sneakers soon, and there's that little issue of needing to feed myself.

Oh, and I got a tuition bill. Financial aid said they would help me with it last semester, so I hope that when I go to them they will say the same thing. Even though it is definitely small compared to other people's, I really cannot afford it.

My job is being ridiculously stressful as well. It is a campus work-study job. There is no need for that.

Well, I am just a whiner today. But I' m pretty stressed out and what are blogs for?

Home and Back Again

I went home on Saturday and I just got back to school now. Being home was so wonderful. I hate having to leave.

I'm also really happy that we had today off, even though I spent a good chunk of it criss-crossing the state. My joints are not taking to that too kindly. In fact, they have been pretty painful for a little while now. They have ven managed to wake me up. Hopefully that gets better soon.

I also think I may be starting to bleed again. When will this end? It is so frustrating, I need it to go away. It really makes no sense.

I got in touch with my old pediatrician. She lives in Ghana running a child health clinic. She is coming back to MA in June and I really hope to meet up with her. She was wonderful, and a huge inspiration for me.

I'm REALLY not getting along with a co-worker of mine. Unfortunately, I have to see her tomorrow for the first time since we got into a little fight. And my boss won't be there to keep things calm. I am extremely easy to get along with, but I can't with her. I never yell at people. But I did at her. Hopefully things go alright tomorrow.

I hope everyone enjoys their week!

Blech

Came down with a fever on Monday and went to University Health Services. No flu, but I am still pretty sick. Unfortunately, I think I got my roommate sick too. I have a stuffy, runny nose, quite a horrendous headache, a cough that has made me pull more muscles than I knew existed and a lingering fever. Suffice it to say I am pretty miserable. But the fever is not high enough for the flu, so its just a bad cold with an ear infection coming along for the ride.

I did not go to classes on Monday, but I wen to them yesterday. Today was a day off because of Verteran's Day, so I will see how I feel in the morning. Hopefully I am better. I was all packed to go home on Monday but decided to stick it out. So I have been trying to get rest and movies in.

When I called out of work on Monday I found out my boss really does have the flu. But she did not come in, thank goodness. Hopefully she will be doing better by the time I go in on Friday.

Inconsiderate?

I have posted before about my feelings on swine flu (and if I could figure out how to quote myself I would link it, help?). While I am not overly concerned, I know it could be dangerous for me and I do not want it. I went into work today, said hello to the office assistant in before me then went to say hello to my boss. She just kind of nodded at me and then when I turned to go back into the assistant cubicle said that probably had the swine flu and was trying to avoid contact. WHAT?????

I immediately came clean and said that I am immunocompromised and the flu could be very bad for me. Everywhere you go on campus you see signs saying STAY AT HOME if you have flu symptoms. Why didn't she heed this advice? She also said she plans on going to the events this week but staying away from people. I had to have close contact with her a few times today. She skipped a meeting, though, and I went in her place (which I did enjoy). I texted my dad as soon as I found out and he told me to get out of there, but I need the money. And how was I supposed to pull that off?

I am thinking about sending an email to the other two assistants to tell them to please, please, please Lysol the office before they leave and do everything they can to keep it clean. I could not believe that she would come in while she was so sick and stay there after I told her in no uncertain terms that she could make me very sick.

I am calling my rheumatologist tomorrow to ask what I should do in the event that I do come down with the flu.

I am pretty mad. And I hope that she doesn't go to the events and potentially infect other people who might have a serious problem if they get the flu.

I will be watching for any symptoms the next couple of days. My plan now if I get sick is to try to get home, whether I am able to drive myself, or have to have my aunt or father come pick me up. My father wants me to go to the hospital if I get flu symptoms, but I plan on just going home and riding it out unless it gets severe. There is no use clogging up the ER if I can stand it at home since there is nothing they can do for me anyway unless I become very sick. But, I will get my doctor's advice tomorrow.