Belated Thanks and Another ER Trip

Thanksgiving was pretty awesome in my house this year. It was the first time in many years that a we had more family members show up than not. We had some amazing food (I made mac and cheese) in large quantities. My aunt made this pumpkin spice cake that was absolutely divine. I also got to see one of my aunts for the first time in almost two years.

There was only one little problem. I realized, just after the halfway point between home and school, that I had forgotten all my medicines at school. I was so far into my trip home, and just wanted to go home, that I did not turn around. I just hoped that the people at the pharmacy could help me out since I am quite friendly with them. Unfortunately, due to some insurance crap or whatever, I was only able to get some of my medicine. Only 1/3 of my lupus medicines. But I made it through Thanksgiving pretty well with only a few bouts of pain.

Things changed when I got back to school with a horrendous bout of chest pain. I knew what was going on. Over the summer I had inflammation on my pleural membrane, and this felt the exact same way. I called my rheumatologist, who was not in, and spoke to her assistant. The assistant told me to call my primary care doctor, which I did. They told me to go to the ER. UGH. So my roommate and I went and after spending hours there so they could run all sorts of tests I was put back on 25mg of prednisone.

I hate prednisone, as I am sure you know. I have spent many months trying to come off it and then to get put back on the same dose I was on over the summer was so disheartening. Luckily, I am now only on 20mg and will keep reducing rapidly. My cheeks were swollen by the third day.

I have definitely learned my lesson about taking my medicine.

Also that night, I managed to lock myself out of my apartment at 1am, bleed all over the place from a cut in my arm, have a pukingly bad migraine and get a $1500 medical bill. It was very unpleasant.

Anyway, I am two weeks away from the end of the semester. Only 8 exams, two papers, 1 lab report and several smaller assignments to go before I am on a blissful one month break.

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.

So Disheartening

Just a few minutes ago I went to pick up a refill of my Cellcept prescription at the pharmacy. I was shocked when the total copay turned out to be $20. It previously had been $10, and I had trouble affording that with the other medicines I take and the $15 copay for my Nexium prescription. Now I will have to pay $20 for generic and $35 for brand name(!!!!). Yearly this will be somewhere around $2000. Over two times what I made in the entirety of last year and a HUGE chunk of all the money I will make this year.

This is just so frustrating to me. When I think I have my finances under control things like this happen to make it worse again. I just want to be able to go out with my friends and if I didn't have lupus this would be possible. My friends and I have set a goal to go on vacation before 2011 if done. I haven't been on a real vacation in years. However, with most of my money going toward prescriptions and my car insurance (because it is necessary for me to have it when I am at school because the area is a little rural and there is no public transportation to my rheumatologist and the hospital if necessary), I don't know if it can happen. I'm so disappointed.

I'm gong to try my hardest to figure out some other options for paying for my medicine. My family is not financially able to support me like this, so it really rests on me. My dad said he will help out with my prescriptions when he saw how bummed I was, but that's an additional burden on him that I do not feel right asking him to take on. Somethings gotta give soon.

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)

Plaquenil the Terrible

I have been taking Plaquenil 100 mg split into two doses for a couple weeks now. I have been sick to my stomach for most of these two weeks and the past two days have been pretty awful. I knew this was going to be a problem from the beginning because I had this same reaction when I was put on it after being diagnosed. My doctor was hoping that such a small dose would be better, but so far no luck. And I am running out of patience.

I also woke up with a migraine today which has not helped my mood. I had to take my migraine medicine twice during the night and then this morning 600 mg of ibuprofen (because I am not taking the Mobic right now because of my stomach).

On Tuesday I meet with her again to talk about my lupus and the results of my kidney ultrasound. I got a letter from her today that said I have multiple stones in them. This does not really surprise me because I have a history of kidney stones.

The weather is gorgeous here (but hot) and I have not been able to enjoy it because of my stomach. I am hoping things will change around quickly. If not then I will have to stop the Plaquenil.

Has It Really Been That Long?

Sorry I have not posted in over a week. I got home a week ago today and have been pretty much just enjoying my time here. I started back at my internship yesterday and I am still waiting to hear back from a real, paying job. I had an interview on Friday with Sears, so maybe that will turn into something.

I am still liking the CellCept, but unfortunately I got my blood test results back a couple days ago and one of my liver enzymes was increased and my C3 complement was high, which I gather means acute inflammation of some sort. Hopefully when I go to The Lupus Center next Tuesday they don't tell me that I have to stop it.

However, while it is still working very well, I have been a little more achy over the past few days, even when taking pain medications constantly. But it is nothing I cannot manage and my evergy levels have been really good.

I am still waiting to get my grades back. I think I got 5 A- and a C+ in Spanish. That class was horrible for me. I took French in high school and unfortunately, that's what I spoke in Spanish class. It was not so bad last semester, so I don't know why I couldn't get the hang of it this semester. In any case, I hope that the C+ wont keep me off the Dean's List for this semester because I have all As for my other five classes.

As I have said before, I am a little crazy about my grades.

Hope everyone has a good week!

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.

Cautiously Optimistic

I am beginning to think the CellCept is taking effect. I worked my (last) 8-4 shift today and I felt almost human after I was done with it. I was not nearly as achy as usual and this morning I wasn't either. This afternoon, however, my knees were pretty achy. But I think this is a step in the right direction!

Tomorrow is the last day of classes. A week ago my Psych/Lit class ended. I finished my Writing as Communication class today when I turned in my case study and tomorrow I have a group presentation for New Media and a test in Plagues. I only have two scheduled finals for Spanish and Media Programming. The end is in sight.

I have also started the medication Amitriptiline for my migraines. I gave it two days last semester because I didn't like the effect of weight gain it can have. I went to my doctor on Friday because of an increase in my migraines and he suggested I give it another try. He assured me there would be no weight gain on the dosage he would put me on. So I am going to try it again because it does help me sleep better as well. My doctor did not want me to go up on Verapamil because my pulse is very slow and my blood pressure is generally borderline low.

Well that's my life/school/medical update. Enjoy the rest of the week!

Well That's That

I finally got my blood test results from a couple weeks ago (after way too much time trying to convince the lab to give them to me, even though it said "to patient" on the order form and I have never had a problem before. They are my labs, why can't I have them?). I was feeling like complete crap a few weeks ago. Most of my results were good except for the highest ANA I have ever had. Well, it was a flare.

Luckily I am feeling a lot better. The CellCept and Mobic are starting to take effect. I am very thankful for this because I was pretty miserable. I am pretty stressed about a lot of things right now and I am so happy I do not have to worry about a bad lupus flare right now. Of course, though, I know I need to take it easy. Being on these meds and feeling better does not give me a free pass to do whatever I want.

I always have mixed feeling when I have positive test results. On the one hand, its scary to know your body is doing things you can't control. On the other hand, I feel better about the decisions I make to take these powerful, serious drugs.

Anyway, I still have so much to do. It is a long weekend, but unfortunately, I am working both Saturday and Sunday. My goal is to rest on Monday.

Nothing Like It

There is nothing like going home. My dad picked me up at school and brought me to the doctor's on Friday. She gave me a Flector patch, which is doing well so far. Then we stopped at my aunt and uncle's for a bit and then continued home.

I am not working tomorrow because I am pretty sure I would not make it. I am so happy to be spending Easter with my family. I have been so miserable lately and I think the best medicine so far has been being home with my dad and the rest of my family.

I am also completely swamped with work. I have never had this much to do before! Maybe I will post my list, but right now it's too overwhelming. I worked on some today and noe I am about to get into bed with a movie.

Happy Easter/Passover/anything else you might celebrate!

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.

Slacking

So sorry for the lack of updates. I have been so busy with school and I have also been having some lupus-related problems. I finally got some pain medication (Mobic) on Wednesday, increased it on Friday and have to call the doctor tomorrow to tell her how I am doing. If it is not better then I have to start the dreaded prednisone, which is another post all by itself. I also have an appointment to see about this cough I have been having on Tuesday with my primary care doctor.

Well, health care reform has happened, and I am thrilled. The preexisting conditions clause does not come into effect until 2014, but it gives me hope for the future.

Tomorrow I pick my classes for the fall. I will be taking my first ever 8am class and I will have no class on Friday. I'm worried about 8am, but it is only two days a week, so I think I will be OK. Of course I will be working when I don't have class. I also registered for two online summer classes.

That's all for now. I worked my 8 hour shift today and it has taken a bigger toll on me than usual. I came to my apartment and slept for a while, but I have a lot of work to get done. So I should get started on that.

I hope everyone has a good week!

More In Depth

I realized that I didn't mention a lot in my post last night.

On Monday I met with the endometriosis specialist about my bleeding and treatment. He took me off the Lupron injections because they have given me osteopenia, which is a precursor to osteoporosis. He said it should resolve after I stop and I hope he is right. He put me on Aygestin, which I was already on, but at a dose 3 times higher. He said that often the anesthesia during surgery can mess up the hormones and cause bleeding. I am still bleeding, so hopefully as I taper up the Aygestin dose that will stop.

My wrist is doing a lot better though it is still a little weak. I think that it will get better in time.

The weather has been phenomenal the past couple days. I was worried I would not have nice weather on my break because it started out with a terrible 3 day rain storm. I think we are still under a state of emergency because of all the flooding it caused. Luckily my area was not hit that hard. We had some minor flooding of the roads but that was it.

Cellcept

Sorry for the lack of posts. It's Spring Break and I have not been near my computer very much. I started Cellcept today. I decided I wanted to try something that would be less likely to make my hair fall out as I was getting really annoyed with the Imuran. I'm tapering up to 2000 mg over several weeks. I don't know if that is normal as I just jumped right in with the Imuran.

I have been feeling so-so recently. My fingers are swelling intermittently and my other joints are aching. But I cannot complain too much. I'm really happy to be home.

Making Myself Crazy

We had another snow day today (but this time with a lot of snow...) so I have had a lot of time to sit around and do some research. I have been worried about my Imuran for a while, most specifically the increased risk of cancer. I have rare blood cancers on both sides of my family, so I think about that anyway. I have reduced my Imuran dose to 200 mg because of hair loss, but I understand that it still a pretty high dose. I am really scared about this medicine, and in general all the medicine to treat lupus.

I have been exhausted today. I slept until about 8:30 when I found out that school was cancelled for the day. I couldn't get back to sleep so I got about 7.5 hours of sleep for the night. Not great, but not bad either. I took a 2.5 hour nap in the middle of the day, and I am now exhausted. Not fun. I also have been achy today. It is probably too soon for the reduced dose of Imuran to be having an impact, but of course I am wondering what will happen if my symptoms do get worse. Will I increase the Imuran and risk losing more hair? Or will I try a new treatment and have to adjust to new side effects? I've been sitting around thinking about this all day and it's making me a little crazy.

It's already almost 10 pm, so I think I might just make a nice cup of hot apple cider, take a Tylenol PM for my joints and call it a night.

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!

The Verdict is Not In

I saw the doctor today after calling early this morning. No answers, but that's kind of the story of my life. They told me to double a medicine I take called Aygestin, which is really just a dose of hormones to replace some hormones my Lupron injections take away. If that is to work then it should in the next few days. So I will go back on Tuesday. If I have not stopped bleeding then they will do an ultrasound to make sure there are no masses. My exam went well, the doctor felt nothing, so I think this is just one of those weird things that happens.

I also got my blood test results today (because at least some of my mail arrived!!!!). Everything was basically normal. My white blood cell count was a little low and my blood protein was high. Not quite sure about that, but the doctor did not seem too concerned.

I'm probably just going to relax this weekend. No crazy parties like last weekend. That was a bit much for me to handle!

All By Myself

So my roommate left for the weekend (without telling me so i spent a few hours wondering what happened to her because she has never left the room for more than 3 hours at a time...) so I have the room to myself for the FIRST TIME EVER. So happy about that and I am going to lounge around and do...homework. I have a paper due Monday night and a whole bunch of other stuff to get caught up on.

I had an EKG on Friday that turned out to be normal, so that is good. However, I was put on the medicine Amitriptaline for migraine prevention. When my doctor mentioned it I said I had considered it previously but it caused weight gain. I have just lost 50 lbs and do not want anything to give them back to me. He assured me up and down that this medicine did not have that side effect. So I started it and then did some research on it and that was a BIG side effect. So I do not think I will take it anymore. I will try the verapamil again.

I also called in a refill of my migraine abortive on Wednesday and went to pick it up today at the pharmacy and the pharmacy said the prescription was never called it. Grrrr.... I woke up with a migraine today and took my last pill. Luckily it worked but my scalp is hurting in my pre-migraine way. But I have to wait until Monday to see what happened with my prescription.

No news on the blood tests fo my liver yet, but hopefully next week.