Thursday, December 31, 2009

Thoughts for the New Year

This year has been a rough one health wise. I have gone from feeling fine to feeling miserable. But it had also been one of the best years in my 21. I struggled for a long time with many different things health related and otherwise. But having an answer to so many questions and finally being able to get comfortable in my own skin has made all the difference.

For the new year, I want to continue this. Continue trying to make the best decisions for my health and on my intended career path and social pursuits. I hope things continue to get better.

I'm going to pay attention to my body. I want to monitor what goes into it, meaning eating healthy, taking the correct supplements and medications that I determine will do more good than harm. I need to listen to it when it is telling me it is tired, no matter how hard that may be.

Hopefully I will be successful and continue to chronicle my journey through college and beyond through this blog.

Happy new year, and see you in 2010.

Tuesday, December 29, 2009

Finally Caved

I put a call into my rheumatologist today because I am pretty miserable. My left knee is doing all sorts of crazy things to me and I could barely walk this morning. Add that to the rest of the joint pain, fevers and continued fatigue and I figured I should call. Of course she is not in today but the assistant called me back and said that my doc will call me in the morning. Hopefully she will have some recommendations.

I debated calling the doctor because I always feel like I am bothering them or that they will think I am a complainer. Is this a valid way to feel? They are there to help. Back in those undiagnosed days I used to call my pediatrician all the time because I was so scared of what was happening to my body. Now that I know, I feel like I should be able to handle it. But I guess when you need help, you need help.

I probably should have called earlier, I've known what was going on. And now I am 100+ miles from my doctor and will have to scramble around to try to take care of myself.

Monday, December 28, 2009

No Energy

I don't know what my lupus is doing right now. I am supposed to get blood tests every 2 weeks and its been, well, a while since I got them done. I get a CBC with electrolytes, liver and kidney function, sed rate and a urinalysis every 2 weeks and then ANA, complements and other assorted antibodies every 6 weeks. I've been slacking, and therefore I don't know what the lupus is doing other than making me feel like crap. Compounding the problem is that my deigestive system is being messed up by a very large stone blocking the flow of things.

One thing I am noticing is fatigue. I do not have the energy that a lot of my friends have. The thought of going to some club until 2 in the morning dancing and drinking and partying exhausts me, let alone actually doing it. I saw the movie Avatar today (which was A LOT better than I thought) and it was 3 hours long. I also went to get something to eat in the same complex as the IMAX where we saw it. I was done by the time I got home. I wanted to run an errand and maybe also see a friend, but I was so tired. I haven't left my couch or the bed since then.

I get really frustrated with myself. Why can't I keep up with my friends? Its all about limits again, and I just need to realize that. I sometimes think that they think I am lame or whatever, but my body just can't handle very much. My joints have been beating me up recently and I'm constantly worrying about how the food I put into my body will make it feel. But most of my friends have known me for most of my life. And Ihave found some very understanding ones along the way. It's probably all in my head when I think they think I am lame.

But anyway, I hope to be feeling better soon and I hope that my surgery takes care of the problems I am having with my stomach. Or else I need to see a gastroenterologist and I am quite tired of doctors and tests.

P.S. RIP Adam Frey

Saturday, December 26, 2009

Merry Christmas and Prayers

I hope everyone out there that celebrates Christmas had a wonderful and healthy one. I got so much stuff for the new apartment kitchen, so I am very happy about that.

On a sadder note, I have been following the blog of Cornell wrestler Adam Frey who was diagnosed with cancer at 22. Things had been seeming to get better, but he contracted some sort of infection and they are just making him comfortable at the moment. Here is a link to his blog. I'm sure his family can use many prayers right now. I can't even imagine what they are going through.

On a different note, my cousin is having a potluck tonight so I am making mac and cheese. I have to go run to the supermarket now to get the diferent items I need.

Wednesday, December 23, 2009


So I am having my gall bladder removed on January 11, which is a little later than I hoped. From everything I read it can take about 2 weeks to start to feel normal again, even with a laproscopic approach. Hopefully that will not be the case because I move back to school January 18. I decided to hold off on my wisdom teeth until May 28 because I do not think my body will handle both surgeries in such a small amount of time.

Also having the surgery later means I have more time to worry about it. And of course I am. I have had surgery before, but always because they were looking for something or removing something that was not supposed to be there. Not to remove a whole organ. I handle anesthesia pretty well - I had a small problem with my heart racing too fast and making me feel short of breath the first time - but that went away in a day or two. I never got sick to my stomach and, really, I spent most of the next few days sleeping. Thats not the part that bothers me. It's the part about removing part of my internal plumbing.

But anyway, I have done nothing but relax the past couple days. I am going to roast my very first chicken tonight, so we will see how that goes. I love to cook, and I love chicken. But I have never cooked anything bigger than a cornish hen (my favorite dinner). So this much larger chicken should be intersting. I am making it with thyme and lemon and it will be accompanied with roasted pecan and gralic bulgur and garlic spinach. Should be tasty!

Monday, December 21, 2009


So sorry for the lack of posts. I finished my finals on Friday and got back home that night. This is the first time I have turned on my computer since then and I even turned off my phone for a while. I went out socially for the first time tonight for my friend's birthday. So I have really just been trying to get my head screwed back on because I think I lost it for a while toward the end of the semester. :)

I met with the surgeon for my gall bladder today. I will be having the surgery, after much anxiety and whatnot. I HATE the idea. I feel like God put it in me for a reason, how can it be taken out with no ill effect? I thought I was at peace with my decision, but I got into a big argument with my aunt just a few minutes ago that has me second guessing my decision all over again. In fact, I had planned to go to sleep an hour and a half ago, but I took her call and now I'm too wound up and anxious to go to fall asleep.

I do not have a date for the surgery, but the scheduler is trying to work it out so that it is next week or the week after so school will not be an issue.

I also found out that lupus has damaged my kidneys a bit. The radiologist noticed it when I had the ultrasound of my belly for my gall bladder. So that explains why I sometimes spill protein into my urine. From my understanding, it is common in mild lupus kidney disease to have protein be found in your urine and then have it disappear during the next test, even if it is just a couple days later.

I had another round of antibody testing that came out fine, even though my joints have been very painful and I have an amount of fatigue that I feel is unusual. I took a nap today! I never do that. I need to speak to my rheumatologist to ask if the medicine can suppress blood tests even when I feel symptoms. My symptoms are very lupus like with the joint pain, fatigue, sun sensetivity and I also have been running fevers up to 100 every day for a couple of weeks now. But maybe I am stressing myself out. I had finals and the end of the semester and now I have to worry about my gall bladder, wisdom teeth and kidneys.

I plan on getting a lot of rest. I really need it.

Monday, December 14, 2009

Rough Week

Well, classes are over so I just have this week of finals. My first one is today from 4-6 and I will be so happy when it is done. It is for my class on world religions and that class has been an unnecessary struggle for no reason. I've been trying to figure out why. I just don't think anything was made clear. We got a lot of information, but none of it seemed contextualized to me.

I have had a lot of trouble with my stomach. It took me a long time to fall asleep last night because of pain and I woke up with pain too. Also a migraine. I got something to eat so I could take my medicine and luckily it has not made me sick. I really hope my gall bladder/liver/pancreas/whatever holds on until I can see the surgeon in a week. I have been running a slight fever, so I'm really trying to be conscious about how I am feeling.

Today I sign the papers to move into the apartment for next semester! So that's great news and I am really excited to get my own room and have a kitchen and bathroom I only have to share with 1-4 other people and not 34.

I cannot wait to go home. I just do not feel well. But I really want to get my finals over with. My hardest two are first. I have no exams on Wenesday, so that will be a nice break.

I also see my primary care doctor tomorrow. I got my antibody tests done again because I had not been feeling well. But of course I can flare without them being positive. So who knows what is going on. It might just be due to what is going on in my stomach.

So for now, I just have to get through this week without my stomach having a meltdown on me.

Wednesday, December 9, 2009

Found Out What Was Wrong

Soo...I need surgery. Within the next couple weeks. My gall bladder is not working like it should so it needs to be removed soon. I'm risking a serious infection if I do not get it out, so ASAP is ideal. I called the surgeons at the hospital I use at home and left a message to see when is the soonest I can get in. If it is not in the next couple weeks then I will have to use the hospital out by my school. I want to be at home because I live there and I know I will just want to curl up in my own bed after the surgery.

I'm not too happy about this. So hopefully I can keep infection at bay until I can figure all this stuff out.

Sunday, December 6, 2009

Not In Control

I don't really think I am doing very well with my lupus. I think I'm just pushing myself too hard, but I don't see any other option. I just want to get this semester, and school in general, out of the way. To postpone my tests and stuff would make me more stressed out in the long run.

I have had a low grade fever for about a week now. My joints have been a lot more painful this past week, my sun problems have started up again, my migraines are coming back and my stomach and throat have been having problems. I'm feeling really run down and just want to get into bed and not think of anything for...even just a few hours. Two more weeks is what I have to keep telling myself.

We got our first real snowfall of the season yesterday. It was pretty to look at, but not so pretty to go out in. I forgot what a pain it is to clean snow off of a car. It was not too bad, the streets are clear. It was mostly on the grass, cars and buildings.

I did get good news today. My friend has an opening in her apartment on campus and I am going to be moving in! So no more roommate problems, I get my own room! And a kitchen where I can make my own food and a bathroom I only share with one other person. I'm so excited!

Today was a pretty good day, but I have a headache that is going to become a migraine. I want to take my abortive medicine but it knocks me out a lot of the time and I have to study for a Spanish test tomorrow. So I'm going to wait a while and take it before I take my shower so that I'm good and sleepy by the time I am ready for bed.

I get my ultrasound tomorrow and I see my doctor on Tuesday. Hopefully I can get some things sorted out. Maybe I should start taking a pain killer regularly again? However, most NSAIDs after a while mess up my stomach. I tried Ultram and was up all night shaking and nauseated, so I don't want that. And anything stronger knocks me out and I do not really want to be on anything stronger. Prednisone has been mentioned, but the side effects of that are numerous.

I guess I will wait and see and pray that I make it through these next few weeks. The end is in sight, I just have to keep focused on it.

Saturday, December 5, 2009

Has It Been That Long??

Sorry for the lack of posts. It's been a crazy week. I have had a lot of papers ad I have gotten far less than half of the amount of sleep I should have gotten in a week. I also had a lot of blood tests done to figure out why I have had a stomach ache, low fever and elevated liver enzymes. I have an ultrasound scheduled for Monday to look at my abdomen. I still have a slight fever and don't feel well. I'm thinking that it might just be because I have not been taking care of myself very well.

There really is nothing to report. I've got two more weeks left of this semester and I am so excited to get out. I'm going to lay on my couch at home for a month.

Sunday, November 29, 2009


I got back to school around 4:15 today. I still have so much work to do as I of course got nothing done while I was at home. I have about 3 weeks until I'm on winter break and I can't wait! But I have a lot to get done before then. Papers and tests and then of course there are finals. Hopefully I can stay healthy during this time. I'm not having a great time with my stomach. I woke up feeling very sick again today. Maybe I will call tomorrow and get an appointment with my doctor sooner.

A lot more work to get done tonight. Wish me luck!

Saturday, November 28, 2009

Belated Happy Thanksgiving

I hope everyone out there's Thanksgiving was as great as mine! I contributed mac and cheese, bread pudding mashed potatoes and homemade cranberry sauce. We also had turkey, ham, turnips, green beans, stuffing, rolls, sweet potato pie and almond cake. It was fantastic. It was great being home and seeing family.

I came in Tuesday morning and missed a bunch of classes. But that was OK because on Wednesday, when I would have been free to leave, there was a 45 mile back up on the highway I use to get home. I was able to drive home on Tuesday with no problem at all and made good time.

Yesterday I went out to eat with my dad and some family friends at Bugaboo Creek. We also saw the movie Precious which was AMAZING. Go see it, It was my first time at Bugaboo Creek. I was jolted awake at 3:30 this morning with horrible stomach cramps. I don't know if it is food poisoning because my stomach has been disagreeing with everything for a while now and it might be a progression on that, so I really need to get my stomach checked out. I have had a barium swallow, upper endoscopy and two colonoscopies because my intestines have bled before without any cause. No bleeding today, but I have been pretty miserable. I may mention Celiac's next time because my stomach really, really does not like me sometimes.

Now I have a lot of work to catch up on. I am supposed to go to a fashion show tonight, so I will see if I am up to that. I can't find my cell phone so I have not been able to get the details on it.

Back to school tomorrow, but it was great being home.

Saturday, November 21, 2009

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.

Tuesday, November 17, 2009

Pin Cushion

So I saw my doctor today for a follow up to headaches I have been having. He also had the results of the blood tests I had done a couple weeks ago at my rheumatologist's office. The good news was that my ANA was negative and the anti-DNA antibodies were "low". I forgot to ask about my sed rate and c-reactive proteins. The bad news was that some of my liver function tests were off, my urinalysis was not up to par and my calcium is high. So I have to go repeat those in the next few days. I'm getting tired of being a pin cushion.

I have explained before that I have something called Gilbert's syndrome which raises my bilirubin levels but causes no other real problems. This does not explain the results of my other liver function tests. That is what has me the most worried. I do not want anything happening to such an important organ. I have had high calcium before, but my parathyroid hormones are OK, so I do not know why that keeps happening. And I have also had weird urinalysis results before.

In better news, I think I did really well on my recent communications and neuroendocrinology exams. Spanish is up in the air. I am not good at oral exams and I realized some mistakes I made on the written exam. I think I did alright on the graded homework, though, and we have another one due Friday. Also, my world cinema and Shakespeare professors postponed the due dates of their papers until after Thanksgiving break and I am very thankful for that.

I have a history paper due on Monday and that is the only major thing I have due before I get to go home for Thanksgiving!

I registered for classes already for next semester. I am going to be taking 19 credits, so thats 6 3 credit courses and a one credit course. I will be taking Spanish 2, Psychological Problems in Contemporary Lit for my psychology major, The Ecology of Plagues to get rid of my last biological science requirement, New Media, Media Programming and Writing about Communications for my comm major and I am taking an Resident Assistant/Apartment Living Assistant class because I will be applying for both of those positions. I will also be having the same job with the same hours.

It will be a busy semester again, but I think I can handle it.

Sunday, November 15, 2009

A Lot Better

I'm doing a lot better with my cold. However I am still congested a little bit and have a slight cough. I'm pretty sure I need to get a humidifier for my room. This is gross, but, whenever I blow my nose mass amounts of blood comes out. I'm thinking the air is just dry, but I have an appointment with my doctor on Tuesday so I will check it over with him.

I have a lot of work coming up before Thanksgiving break. I have an oral Spanish test on Monday, a neuroendocrinology test on Tuesday and both a history and cinema paper due soon. Its going to be pretty busy.

I went to an event at a neighboring college last night. It was a celebration of the Harlem Rennaissance. It was really interesting, although I thought the planning could have been a little better. They served "soul food", which was nothing like my grandma's home cooking, but it was pretty decent. What can I really expect from a college campus? The performers were really good. They were all done by students at the college. There was spoken word, dance, singing, art presentations, short films, etc. I couldn't stay the whole time, but what I saw was really nice.

Thursday, November 12, 2009

Slight Problem with the H1N1 Vaccine

So I recieved an email today that the H1N1 vaccine is now available to those in high risk categories. I fall into the group so I thought it was perfect. It is being offered from 10-2 in an area on campus not easily accessible, so I would have to figure out a time to go down there and get it without missinf class or work. But I figure I can do that. I went to print out the screening sheet and there was a question on there about ever having Guillain-Barre syndrome. Uh-oh. I read further and it said that people who have had this condition may not be able to receive the vaccine. Uh-oh. I have had something that seemed a lot like Guillain-Barre syndrome although they do not know what was really going on. So am I ineligible for this vaccine? I have to call my doctor early tomorrow to figure it out.

I was/am on the fence about getting the vaccine. And I certainly do not want to go through anything like Guillain-Barre again. I could not walk and I was almost stuck on a ventilator in the ICU. However, that could happen if I get the flu too. So I'm even less sure about what to do now.

Wednesday, November 11, 2009


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.

Sunday, November 8, 2009

At Least I Was Home

Well, I am sick. I posted a few months ago about getting a combination of bronchitis, sinus infection, ear infection and strep throat all at once and I'm pretty sure that brewing again. I havent been feeling all the great for a while, but it finally hit me pretty hard on Friday. I took the bus home and about 15 minutes away from campus it broke down making me extremely late, cold and unhappy.

I considered staying home until this passes, but I decided to go back to school and go home if it gets worse. My primary care doctor is up here and if I get sicker at home my only option is the emergency room (because my insurance does not pay for urgent care...stupid). So I'm going to ride it out. I do not plan on going to class tomorrow unless I am better, so I think I will probably hang around and watch movies. But I am going to do my homework so I do not fall behind.

I dount this is the flu because my temperature is only slighty elevated. If, though, it shoots up then I will reevaluate my plan. So for now its cold medincine and tea. Hope I feel better soon. Its so inconvenient being sick.

Wednesday, November 4, 2009

Going Home!

I have decided to go home this weekend. I haven't been home in over 2 months! I am being inducted into an honor society on Sunday and I want to get my hair done before the ceremony. I chemically straighten my hair, so it is a bit special. The area where I go to school does not have any salons near it that can properly take care of it, so I have to go home. I am going to be taking the bus home because my dad and aunts are going to be driving up on Sunday, so there is no point in me driving when I can drive back up with them on Sunday!

In other news, I have had a sore throat since yesterday and my stomach is not cooperating with me. It will be nice to get off of campus for a while and get better at home. I have committed myself to a party Friday night, but Saturday my dad has a "date" and I will spend my time on the couch watching movies!

Now I can't wait until Friday ay 3:45 when I board the bus home!

Monday, November 2, 2009


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.

Saturday, October 31, 2009

Happy Halloween!

Well, Halloween is almost over. I didn't do anything celabratory. My dad is in the area playing cards with his friends so we went out for lunch and took care of a few things. I watched some movies and TV and just hung around. I am kind of achy and still in my "i hate lupus" mood so I was not really in the mood to deal with much. Also, my favorite month ends now.

Since my doctor was an hour late for my appointment it was quite rushed and I did not get to discuss everything I wanted. Like how I want to come off the Imuran because I am nervous about the increased cancer risk and the lesions on my legs.

Hopefully I snap out of this soon.

Thursday, October 29, 2009

Doctor Update

I have a few minutes to update since my doctor was an hour late for my appointment and I missed my first class.

My sed rate was up last time I got blood tests so I have to get that checked. Also I am getting all the antibody tests done again. I have to have an EKG soon. All in all pretty uneventful. Hopefully the blood tests I got done today will be normal.

And she said I need to be twice as worried about the flu. Oh well. I'm still not that worried.

Tuesday, October 27, 2009

Ho Hum

Today I had a neuroendocrinology test. I studied really hard for it, and it was pretty difficult. I hope I do OK on it. I'm not too happy with how I am doing in school right now. It's only midsemester and I am not doing horribly, but I'm EXTREMELY hard on myself when it comes to school. I did pretty bad the first couple years because I was sick and missing school, on all sorts of meds....But now I am better and I've done really well the past couple semesters. I have pretty big ambitions, so I need to keep my grades up.

I have an appointment with my rheumatologist on Thursday. It is at 9:30 am and about 25 minutes away from my school. Tuesdays and Thursdays are usually my sleep in day ( I wake up at 9:00am) but I had to wake up at 8:15 this morning and 8:00 on Thursday. So no sleeping in for me.

I have a couple things to discuss with my rheumatologist. I am concerned about the cancer risk from taking Imuran. I have tried Plaquenil, but it made my stomach go crazy. I DO NOT!!!!! want steroids and other immunosuppressives have the risk of cancer. I have gotten COUNTLESS CT scans, x-rays and bone density scans that I am so worried about the risk of blood cancer. I have to get a bone density scan in December because the Lupron for endometriosis I am on can cause osteoporosis. No sign of that, though, thank goodness.

I also want to know just how in control my lupus is. My blood tests do not usually show activity even when I am miserable. My white blood counts and sometimes my red blood counts are low. My ANA has been positive once and my complements are always good. My sed rate and c reactive proteins are variable. So my blood is not a reliable indication of how my lupus is doing. But I feel so up and down. I can be incredibly achy one day, with mouth sores, migraine and low fever and be fine the next day. And I am so tired. I do a lot, but its the can't move, can't think, don't wanna sleep, just lay there tired. I guess I am tired of lupus. I am tired of being sick and I am sick of being tired.

It's just one of those days. I spent more time than ususal trying to arrange doctor-type stuff. I have had a know right below my collar bone for as long as I can remember. It is hard and does not move. My doctor all of a sudden has taken an interest in it. So I had to call around and get previous imaging studies sent to him. I had to talk to the nurse of my endometriosis specialist. And I am feeling pretty blah in general. Oh well, hopefully this mood improves.

Saturday, October 24, 2009

Almost Back to Normal

I don't really know what happened to me the past few days, but I think it is passing. The mouth sores are gone. I only have a bump where one was and it is not painful anymore. My joints are still aching a bit, but the migraines are gone. I still have a spot on both of my legs that I am not sure of. Maybe a discoid lesion? I see my rheumatologist Thursday.

I saw my doctor yesterday. All my blood tests looked good except a low white count. I have something called Gilbert's syndrome that raises my bilirubin but causes no other health problems, so that test was also abnormal. I also got the last Gardasil shot. Man, those things hurt. They were out of the flu shot and my dad said the places he called back home are all out to. So I guess I am not getting that. I'm still unsure about the swine flu shot.

This upcoming week is not so bad. I have a neuroendocrinology test on Tuesday, and oral Spanish test on Wednesday, but that is it. I am rewriting my history religion paper for a better grade and I will give a draft to my TA on Wednesday to look over.

I'm so happy its the weekend. Also, don't see Couples Retreat. The movie is AWFUL.

Tuesday, October 20, 2009

Still Not 100%

I don't really know what hit me, but the past couple of days I have not been feeling well at all. No (high) fever, so I know it was not the flu. I tend to run mild temperatures 99.0-100.0 and mine these past couple days never got out of that range. I got these mouth sores and then all day yesterday and this morning I had a horrible, horrible migraine with accompanying nausea. I was miserable and it seemed as though my migraine meds were not working. I took it again around 5:40 this morning and that seemed to do the trick. I went to all my classes today and participated in a research experiment. By noon the headache was gone, so I think the worst was over. Now its just this lingering slight stomach ache and mouth sores which are persisting. I think it is only one or two left now though. I also think I may have a discoid lesion on the back of my leg. I see my primary care doctor on Friday and my rheumatologist next week. Hopefully I start to feel better soon.

This does have me very scared that I am flaring. All these symptoms especially the mouth sores running rampant and thi possible discoid lesion have me nervous. Since I am still not feeling 100% im considering not going to class and sleeping in. I have history in the morning and a meeting with my history TA to go over my paper so it would not be horrible if I missed the class. But I may be great tomorrow, so I will see. I hate missing class. But I also can't mess with a flare.

Sunday, October 18, 2009


These mouth sores are really hurting. It was like I had 7 or 8 of them at one time. Now its just the last two that are hurting really badly. Ow,ow,ow.

Thursday, October 15, 2009

What is Going On???

I've been thinking that a lot today. The first reason is the weather says it might snow tomorrow?????? Absolute craziness.

Also, I have had a resurgence of mouth sores the past couple days. It hurts to talk, chew, whatever. I'm not sure why this is happening.

I missed my first class today because I was exhausted and couldn't print out the notes because the file wouldn't load. So I stayed in bed and got some rest because I woke up early this morning with pain in my joints, which is never a good sign. Along with these mouth sores....I don't even want to think about a full blown flare. I also felt completely guilty about missing this class. But I need to take care of myself as well.

I have a paper due tomorrow for my Shakespeare class so I really need to get started on that.

Tuesday, October 13, 2009

Tuesday or Monday?

So because of the long weekend, my school decided to make today (Tuesday) a Monday schedule. Totally has me thrown off. I also had to work today but I thought that I did not because in the real world it is Tuesday. But since I work on campus, I, unfortunately, had to go in. I've been having some problems at work with people I work with and I was not looking forward to having to go in today. I'm beginning to wonder if I should tell my supervisor about my lupus. I made a comment about me having an autoimmune disease but did not go into detail. My problems are not with her, but I wonder if I speak to her she can tell some other people to back off. For example, today I was taking longer to process what I was being told during a training session because I had a migraine and am totally and inexplicably exhausted. Hopefully that gets better.

I would really like it to be the weekend already. I'm not feeling that great. Migraines are out in full force and since yesterday I have been EXHAUSTED. Wonder if I am coming down with something? I was seriously ready for bed at 6:45 last night. I want to go to bed now but still have assignments and stuff to get done. I have two papers and my Communication portfolio due this week, but those are probably going to wait until the night before unfortunately because I am just too tired to do anything else. I guess everything is catching up with me.

Sunday, October 11, 2009

Long Weekend!!!

It is Columbus Day on Monday and my school observes it so I get a three day weekend! I'm so happy about this. Another day to relax before the usual craziness of my weekend begins. I have barely done any work so far this weekend. I'm going to get started on some history reading in a few. I HAVE done a lot of visiting with friends and shopping. I have spent way too much money this weekend.

This past week was pure craziness and the upcoming weeks are not that better. This time to relax is great. I was in bed by 11 last night and slept in until 10. Saturday I had to get up early for my wisdom tooth consultation and did not get to bed until around 3 that morning. So sleeping in was wonderful.

My wisdom tooth surgery is not until January 8. I am not being completely knocked out like I wanted. I am just getting a combination on Valium, laughing gas and novocaine. The surgery is on a Friday and is up by where my school is so I will be spending that weekend at my aunt and uncle's house in case there are any problems I do not have to drive 2+ hours back to the surgeon's office. I'm extremely nervous. Although I have had two surgeries before, I DO NOT like anyone messing with my mouth or throat. Getting a throat culture on me is one of the hardest things a doctor or nurse will probably ever have to do haha. I'm very, very sensetive about that region. I always have been and probably always will be.

I have been feeling OK. I end my antibiotics for my sinus infection today, although the headaches are continuing. I don't know what that is about. I have an appointment to see my doctor for a follow up. I also am seeing my rheumatologist in a couple weeks. My joints have been bothering me at night recently also. All in all, though, things are OK. Hopefully they stay that way.

Thursday, October 8, 2009

Midterms...Kind Of

Well, one of the most dreaded times of the semester is upon me. Midterms. And I think they are a bit early this year...

I had a history paper due at 11:59 last night which took me forever to write. I have seriously never had such a hard time with a paper before. I hope I got a good mark on it! I also had a written Spanish test and a Spanish paper due. Tomorrow I have an oral exam for Spanish and an advertising test at night. Next week I have a paper for Shakespeare, a paper for World Music/Cinema and my protfolio is due for that class is due also. The week after I have an audio/visual project due for my World Music/Cinema class, a test in neuroendocrinology and another Spanish paper, test and oral exam. Whew!

My grades so far this semester have been really good so hopefully I will continue that trend. I am a bit of a perfectionist so I won't really be happy if they are not good. I also have not missed a single class yet this semester!

This weekend is a long weekend but I am not going home. My plan is to RELAX. Things have been very bust for me and it is not going to let up anytime soon in the next few weeks.

On Saturday I have a consultation with the oral surgeon to get all four of my wisdom teeth out, so I will updat about how that went.

Saturday, October 3, 2009

Quick Post

I think the antibiotics I am on for my sinus infection are messing up my stomach. It feels horrible. I'm considering going to urgent care and seeing what they can do. Also, I woke up with a migraine today. I'm wondering if it has anything to do with the Lupron shot I got yesterday?

I've got 4 papers, 1 project and 2 tests coming up in the next few weeks. The first paper is due on Wednesday for my World Religion class. I'm starting to outline it now. That's my Saturday night!

Wednesday, September 30, 2009

The Obligatory H1N1 Post

Honestly, I'm not too fussed about it. There has been nothing to convice me that it is any worse than the normal flu. And while I by no means want the flu, I'm not too concerned about it being of the "swine" variety.

I don't want the flu shot or the swine flu shot, although I know I should get them and I probably will. I've had one bad experience with a flu shot where I all of a sudden developed a fever of over 103 and felt like I was in my last days. I've had flu shots where that has not happened, but still I'm not too happy that it happened even once.

But I guess I should be careful, because I am considered immunocompromised. But I'm not going to go crazy over it. All I can say is to take precautions: wash your hands, don't go near sick people, etc. But don't stop living life just because it is out there.

Tuesday, September 29, 2009


Saw the doctor this morning for some strange headaches I have been having. Turns out I have a sinus infection. Not cool. Haven't had one of these in years. So now I am on antibiotics for the next 10 days. I hate antibiotics and this is my third round in just about four months. I'm not happy about that either. But hopefully these headaches will get better.

Monday, September 28, 2009

Only the Third Week? Really?

Classes are in full swing, but it is only the beginning of the third full week of classes. Somehow it seems that its been a lot longer than that. I have a whole bunch of papers and tests coming up that I am not looking forward to. I have already had a Spanish written test, graded homework and oral test. I did fine on all of them, so I am happy. Last week I was really worried about a test for my behavioral endocrinology class, but I think I did well on that as well. The grades have not been posted yet. In the next couple weeks I have a history paper, world cinema paper, shakesperare paper and advertising test. Whoopie!

I'm holding together for the most part. I see my doctor tomorrow because I think my sinuses may have a problem. I keep getting headaches that are not like my normal headaches. They are situated in the front of my head (my migraines are normally in the crown) and it hurts when I press the space on top of my eyes. I remember being told my sinuses didn't look that great when I got dental x-rays.

I'm very busy but I am enjoying it. I guess that is what counts.

Tuesday, September 22, 2009


This will be a quick post because I have to leave for class in 15 minutes. But this is a subject I have touched on before and want to talk about some more. How do you know when you reach your limit?

As I have said before, I am new to lupus. I don't have everything figured out about what I can tolerate and how far I can push myself. Usually, I figure it out when I start feeling like crap. So how do I avoid this? This would be an incredibly bad time for me to go into a major flare. I can deal with the joint pains and other symptoms, but I cannot be down for the count. There is far too much to be done. But how do I know I am pushing to hard before it it too late?

I have some ideas I will post later when I get a chance to really think out a post. But for now, does anyone else have any ideas?

Friday, September 18, 2009


This problem is one of the worst there is. Unfortunately, I have been suffering from it for a few years. I can be exhausted and not sleep. It's an incredibly lonely feeling being up when you know everyone else is asleep. Try as I might I cannot get my brain to shut up. No matter what I do during the day to try to wear myself out, I toss and turn for hours before drifting off into an often restless sleep. On days when I am achy I take a Tylenol PM, but I cannot get dependant on them. So I often just toss and turn. Unfortunately for my roommate my bed squeaks this year...

I don't think it has much to do with my lupus, but I can't be sure. Fatigue is a symptom of lupus I have, but more of the just-sit-in-bed-and-do-nothing fatigue, not the sleep for hours fatigue. It's more of a no matter how hard I try I can't get the energy to move type of fatigue. I am desperate to be able to fall asleep easily.

Anyone have any suggestions. It drives me crazy. How do you shut off your brain?

Monday, September 14, 2009

Just Relax

This weekend my joint pain got pretty bad. I knew that I needed to take it easy: rest, watch tv, in general do what pleases me. However, I am not very good at relaxing. There is always some school work to be done, some errand to be ran, etc. I absolutely did not want my joint pain to progress into a full blown flare, but I also did not want to just take time out to relax because it is not something that comes naturally to me. I'm happiest when I am busy.

Today I am not feeling that well and it is the beginning of the week. Not the best way to start off. And I know I really, really need just to lay in bed for a little bit and let my brain and body chill. But it's not that simple. Spanish class starts in 45 minutes-we have two quizzes. After that I need to get some lunch and then I go to work for a few hours. Then I have homework to do-reading and a video to watch for my online class.

I need to learn how to do this. I cannot do everything. Hopefully, very soon I will figure this out.

Saturday, September 12, 2009


My first week of school is now over. It was pretty stressful. I started all six of my classes and also started work on Friday. I decided I would make this post about something that also made my week more stressful.

At my university, I qualify for disability services. This is something that I struggled with all last semester. I did not want to be stuck with the label of "disabled" when I could still move around and was able to get just about everything I wanted done. My first major flare did not hit until last semester, and after that, I realized that I should have something in place in case I ever feel so sick again.

With my disability accomodations, I am eligible for leniency on absences, extra time on assignments and extra time on tests. I doubt I will need extra time on tests, but the disability office put that on there just in case. I have to get all my professors and discussion leaders to sign a paper saying they understand I have a disabilty, although they do not know what it is, and will give me these accomodations.

Having these services is something that I do not want. I hated asking my professors and tried to hide the sheet so that none of the other students would see it. I guess I'm afraid of being stigmatized. But, at the same time, I realize that this is something I need. Even now, I am up at 7:20 in the morning because my joints ache from running around so much this week.

Can anyone else relate to not wanting a label?

Tuesday, September 8, 2009

I'm Baaaaackkk!

So classes start today. My first class is at 11:15. I have three today. My first is the only class I am taking for my psychology major, Behavioral Neuroendocrinology. Then I have Shakespeare to take care of my last literature requirement, then World Cinema for my communications majore. I am also taking an online advertising class for my communications major, Spanish and a class on world religion. Tomorrow I get my work schedule so I will see how that is going to fit into my already packed schedule.

I woke up today with a migraine. My alarm was set to ring at 9:30, but I woke up at 8 and took my migraine medicine. I'm happy it did not make me ridiculously groggy, because I want to be in tip top shape for my first day.

My roommate moves in today. She's an international student from Taiwan, so that should be interesting. I love learning about new cultures.

My dorm room is a closet. It's seriously tiny, but oh well.

Hopefully I will have a more coherent post later.

Friday, September 4, 2009

Just About Done

I wrapped up my summer internship today. I was working at a music production and promotions company booking concerts for local bands and artists. I really enjoyed the internship, and I got offered a paid position for next summer! I'm really happy about this. So summer really is coming to an end. I move back to school on Sunday, so I have to enjoy these last few days of summer.

I am going into my fourth year of school, although it will not be my last. This will only be my second semester st my current school because I transferred there last semester. I am double majoring in communications and psychology. I hope to go into artist management, specifically tour managing, when I graduate. Music has always been a huge part of my life, so I'm hoping that I can make a career out of it.

I've been dealing with a sore throat for over a week now and now I have several sores on the roof of my mouth. I'm hoping these things clear up before school really kicks into gear because I have too much on my plate to deal with my lupus becoming really active. I would not consider my lupus very well controlled, but it is manageable.

So for the next couple of days I am going to rest and stay out of the bright sunlight we have had for the last couple days and which is forecasted to persist. Hopefully this will be enough to make sure big bad lupus doesn't act up too much.

Friday, August 28, 2009

Back At It...Almost

School is fast approaching. I move back in September 6, and classes start September 8. This semester I am taking six classes and will have a job for 8-10 hours a week. I'm a little nervous about this course load, so hopefully I can handle it.

I'm living in an alcohol free dorm next semester because although I am 21 and have had alcohol, I have very limited patience for people who are drunk and so I am just choosing to hopefully be without them for a while. I have not hear from my roommate yet (and I have been trying to get in touch with her for 3 weeks) so I am very frustrated about that. Also, my book list has not gone up yet. I hate buying books from the school bookstore because they are outrageously expensive, but I also do not like not having my books for the start of class. So if the books don't go up soon, I'm going to be forced to buy them from the school bookstore and spend a lot more money then I have to. More stress.

Also there is just packing and all that.

I currently have a sore throat and a key missing from my computer, so I'm just not in a good mood. I'm excited to go back to school but really wish things were going smoother right now.

Wednesday, August 26, 2009

I've Been Away

I have been pretty busy this past month, so no updates from me. But I will be getting back to them especially since school starts in a couple of weeks.

My health has been pretty up and down. My joints continue to be the biggest problem. Normally, the sun causes problems too, but here in the Northeast, most of the summer has been cloudy and rainy and cool so that wasn't a problem. But now summer has arrived and I've been hiding in my house the past couple weeks.

I'm worried about some blood work that I got back today that was taken on Monday. It showed that I had high blood sugar and that was the second time in a row I had gotten that result. The time before the time before last (are you following?) my blood sugar was low. When I was in high school I had problems with my weight due to medications and was told I was insulin resistant. I have lost about 40 lbs since then, I watch what I eat and I exercise as much has I can. So what's going on. Also, my white blood cells were the lowest I have ever seen them. Ah well.

I got pretty sick a couple weeks ago. I ended up making the 100 mile journey to school to see my primary care doctor twice and made two trips to the ER. Two rounds of antibiotics later I am better. From what I can gather I had strep throat or another form of pharyngitis, a double ear infection, sinusitis and bronchitis. Ohh the joys of being immunocompromised.

I will write later about school starting up. I'm a little stressed about it right now for various reasons.

P.S. Hello followers!!!!!!!! I'm sorry I missed you. Also, R.I.P. Sentaor Ted Kennedy.

Sunday, July 26, 2009


I was driving in the car with some friends today when I saw a sign for the Lupus Foundation of America. I pointed it out to my friend in the car who knows I have lupus and she said she had been hearing ads on the radio. I have not heard these, but it makes me really happy that lupus is now getting recognition.

Friday, July 24, 2009

I'm Still New

I haven't quite gotten used to lupus. I'm unsure about what to do in situations like the one I am in now. My joints ACHE, my chest is hurting and I hate anything that threatens to remove me from my bed. My rheumatologist was not in today and the nurse who called me back told me she had no idea what to do for me. Everything I see online tells me how to prevent a lupus flare, but not so much how to treat one once it has already started.

I guess this all means I need to be more proactive when I see my doctors. I need to stop being intimidated and I need to stop feeling like I am wasting their time with my questions. All it does land me in situations like now, a Friday night in pain with limited options on how to treat it.

I take Imuran and Relafen for my lupus, and I often supplement the Relafen with Tylenol. Hopefully, this combination will work its magic this weekend.

Wednesday, July 22, 2009

Universal Healthcare

I read an interesting article on AOL recently:

The article talks about how many young people are more likely than older people to support universal healthcare. I know I do. I will graduate college in a year or two and it will be a disaster if I do not have health insurance.

Additionally, my student loans are compounded by the fact that I already have tens of thousands of dollars of debt to pay back for medical expenses while I was searching for my lupus diagnosis. I'm 20 years old and already in major financial trouble.

I do not know as much as I should about President Obama's health care reform plan, but over the next few weeks I plan to learn much more as it is certainly something that will effect my life as well as the lives of many other chronically ill young adults.

Monday, July 20, 2009

A Very Long Road to Diagnosis

I was diagnosed with lupus in September of 2008, however I was sick way before that. Just before my 16th birthday in July of 2004, I was diagnosed with a condition called endometriosis via a surgical procedure called a laparoscopy. This condition had caused me severe abdominal and pelvic pain for a couple years and I was very happy to get the diagnosis. I was put on medications for it and they worked for a while. Unfortunately, the pain came back a couple years later and I had another laparoscopy in January of 2008. Since this last procedure I have had very few problems with the endometriosis and I do not consider it to be a real problem with my health anymore.

I can remember getting migraines as a very small child. As I grew up, the migraines seemed to lessen until October of 2007 when they came back with a vengence. I spent five days in the hospital that month on IV steroids to try to break the migraine. I was then tried on various preventetive medicines. Nothing really seemed to work and I needed steroids, IV Toradol and IV compazine almost every few weeks in order to get a few days of normalcy. I had been seeing a neurologist before this because I had a problem with a blood clot in my spinal column after a spinal tap for viral meningitis a few years earlier and a bout with something that looked a lot like Guillain-Barre syndrome the year before. My neurologist was perplexed on how to treat me and we tried various preventetive medicines for a while.

In May of 2008 I started realizing that I would get a painful rash every time I went out in the sun. I did not know what was going on. A few weeks after the rash started, the fingers on my left hand started to swell up and then my right hand and feet followed next. I also started to get very weak and tired when I went out into the sun. I made an appointment with my doctor and they ran some blood tests for rheumatoid arthritis and also tested my ANA and did a complete blood count. I was told by phone that the rheumatoid factor and ANA were negative and that everything seemed fine so I should just drink more water in the sun. I tried this, but was still getting sick, so I went back but had to see another doctor. She told me that the CBC was not completely normal and informed me I might have lymphoma or another blood cancer. Needless to say I was shocked.

I did not believe this was the case. I told her about my joint problems and my (extensive) medical history and she said I should see a rheumatologist. I hoped this doctor would get to the bottom of everything. However it would be months before I could see one. I started my 3rd year of college in incredible amounts of pain, unable to tolerate the sun, with sores in my mouth, the rims of my eyes and in my scalp and feeling pretty awful in general. I called the rheumatologist I was supposed to see and pleaded with them to take me sooner. And they did. After hearing my symptoms, the doctor told me he was pretty confident it was lupus. They did blood tests and the were...normal. I was so confused. But he was positive that it was lupus and started me on Plaquenil.

The Plaquenil and my stomach were constantly at odds and I was in terrible pain and still getting sores, so he switched me to Imuran and put me on an NSAID. Around this time I decided I had enough of the school I was at and transferred to another school 100 miles away from home. I started with a new primary doctor and rheumatologist. My ANA tested positive after I saw the new rheumatologist (the only time since then). My sed rate and C reactive protein, red blood cells and some other blood tests came back strange after that also, so I officially got the 710.0 diagnosis of SLE.

This really is a brief overview of what I went through. I have been hospitalized many times since the age of 14, told I was a hypochondriac, and was completely miserable for a long time. Getting the diagnosis, while scary, also proved to myself that I was not crazy. At this point, I don't care about proving anyone else wrong. I knew for years something was going on in my body and now I know what.

Thursday, July 16, 2009


This is my blog to talk about my daily (weekly, monthly, however often I update it...) life with lupus. I am a college student dealing with a chronic autoimmune disease called systemic lupus erythematosus. I was officially diagnosed in September of 2008, although I had been sick for years before that. It wasn't until my left hand decided to swell up one day and I had some strange blood work that the ball really started to get moving. Before I had been told that I was flat out crazy or just making things up.
Lupus effects everyone differently. For me, I have an extreme sensetivity to heat and the sun. My joints are also effected, mainly the ones in my legs and feet, but also in my back and upper body. In October of 2008, I started getting horrible migraines, and I still continue to get them frequently. I think these are associated with the lupus. I also get canker sores far more frequently than most people. They can also develop on the rims of my eyes, my scalp and my nose.
When I got the lupus diagnosis I was happy to learn that I was not crazy. But after having years of people telling me that I was, I doubt myself very often. Even when I know something is due to the lupus I think I am making it up in my own head and maybe push myself or not take care of myself as well as I should. I also am a 20 year old college student and dont want to miss out on stuff because I am sick.
Anyway, I am starting this blog over my summer break, so I'm not in school at the moment. I have a great internship, but need to find a job that pays me ASAP. So, I'm off to go hunt Craigslist some more.