Friday, December 24, 2010

Stuffed and Content

Yesterday I tried dim sum for the first time. Here is a wikipedia article about it. It was quite interesting. I'm not sure how much I actually liked, but I am willing to give it another chance. It certainly helped that I was with someone who spoke fluent Cantonese so that I could have some idea about what it was eating. There were a lot of mushrooms involved, which I do not like (it's a fungus!!!!) and I think that contributed to why I did not enjoy it that much. It also could be just the restaurant because I have nothing else to compare it to.

Later, I went out to eat with my dad and some of his friends. We went to a really nice Italian restaurant and the food was really good. I got a dish called chicken Mediterranean which was chicken, pasta, feta cheese, tomatoes and spinach in a lemon sauce. It was so good. The only thing I did not like was that there was no sangria on the menu ;-).

All this eating out stands pretty much against the way I am trying to change my eating habits. I'm all about the home cooked meals, especially as I wage war against prednisone and it's weight-gaining ways. It is so much easier to control what you are eating when you know you prepared it yourself. For example, there is an Au Bon Pain at the hospital that I use. I spent most of the morning and afternoon there on Tuesday and did not feel like paying for parking so my dad went with me to the first appointment and then came back to pick me up after the second. While I was waiting I got some lunch at Au Bon Pain and decided to get their southwestern cornbread for me and my dad. When I got home I looked up the nutritional information of the cornbread and found that it contains 560 calories and 30 grams of fat (!!!). This is over half, and almost all, of the fat that try to eat in one day.

I'm fairly certain that I can make my own cornbread without all the fat and calories. Since I really, really enjoy cooking, I don't mind trying to remake recipes. I'm very happy that restaurants have started to post the caloric content of their menu items because it makes it so much easier when you are eating out. But it also dissuades me from eating out a lot because I can see exactly what I am eating.

Anyway, Merry Christmas Eve to all those who celebrate it!

Tuesday, December 21, 2010

No Answers, But What Else Is Knew?

I had my appointment with the endocrinologist today and while something being off was definitely noted, what that something may be was not. As I have said before, my calcium levels are high and I have a problem with kidney stones. I currently have a about 4-6 sitting in each kidney and every once in a while it goes acute and causes me a lot of pain. I have never been able to have one of these stones analyzed to find out what they are made of, but with my calcium issues it has always been assumed they are made out of calcium.

The endocrinologists seemed to want to get a better handle on what the stones are made of. Usually when calcium is high, another hormone called the parathyroid hormone will also be abnormal. In my case, the doctor called it "inappropriately normal". This confused them and opens up other possibilities for why my calcium is high. None of which are that good, and none of which I really want to get into right now mainly because it's kind of scary.

The plan for now is to redo the calcium, parathyroid and all of those tests. I'm getting more kidney function tests and some other hormone tests. Then we can make a decision as to whether imaging needs to be done of the parathyroid gland to check for masses and if the doctors need to actually retrieve the stones from my kidneys to verify the stone's composition. Just hearing how the stones would be retrieved made me cringe.

I also saw my endometriosis specialist today and I am reducing my Aygestin. He basically said anytime my prednisone doses are changed around it will interact with my Aygestin and cause the problems I have been having. But since my lungs like to swell up so much, getting off the prednisone is proving kind of difficult.

I'm pretty discouraged. I just want my body to work. There were other alternatives mentioned that are too hard to really think about right now, and my mind is spinning a little bit. It just seems like every time something starts to do right, I fall back into another medical quagmire. And I am getting very sick of it.

Sunday, December 19, 2010

Well, That's Done

The semester from HELL is over. I finished my last final at 2:30 Friday and went straight home. It took me three hours to get home because I left just in time for rush hour traffic, but it was good to be home nevertheless.

By my last final, my brain was off. It was for my history of film class and I could barely remember any of the movies we had seen over the semester. Hopefully I did not bomb it too badly.

Now I have a whole month off to do NOTHING and it is so wonderful. I do not really have any plans, but that is fine with me. We got our Christmas tree yesterday so I can finally start getting into the Christmas spirit.

I have a couple of upcoming appointments next week. One with an endocrinologist to see about the issues I have with regulating my calcium and one with my endometriosis specialist for some issues I have been having with it. I also got a call saying that I was scheduled to see surgeon in the endometriosis specialist's office, but no one talked to me about that. I really DO NOT feel like having another surgery for it.

I hope everyone has a good holiday

Saturday, December 4, 2010

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.

Saturday, November 13, 2010


It's been almost two weeks since my last post. Sorry about that. I guess there is nothing really to say except that I am still drowning in homework and doing a prednisone taper. It almost seems like I am never getting off of it. For the next two weeks I will be alternating 5mg with 6mg.

Speaking of drowning in work, I registered for five classes next semester so far. The total amount of credits is 17. Since I seemingly love to torture myself, I also am applying for a course overload so I can take 21 credits next semester (limit is 19). I am trying to get as many prerequisites for nursing school out of the way that I can because I am still getting financial aid. I also found a seminar lat minute that I really wanted to take because I am a nerd. So for next semester I have general chemistry plus its three hour lab, nutrition, an online class about public relations, a class called performance ethnography (unless I can get into the documentary seminar) and a psychology seminar about clinical psychology. I hope to be able to register for developmental psychology at the school down the street from mine which costs $40,000+ a year but I can take any class there for my tuition rates. This goes the same for any of the other 4 ridiculously expensive schools around me. All I have to do is be registered for 3 credits and my home institution.

Anyway, my joint pain has been increasing and I have had to supplement my prescription pain meds almost everyday with over-the-counter ones. This is not encouraging, but I do not see my rheumatologist again for a few more weeks and do not really feel like going to see her anytime sooner. Unless, of course, it gets real bad.

Hope everyone's November is going well so far!

Monday, November 1, 2010


Ever since taking neuroendocrinology a couple of semesters ago I have been really interested in the field. I guess I will have some first hand knowledge now that I am scheduled to see an endocrinologist later this month. My calcium levels are wacky, my Vitamin D levels are out of sorts and I have low citrate (whatever that is) which is making me crank out kidney stones at an alarming pace. I did one round of Googling about what this all could mean and then I stopped. No use getting ahead of myself because I will probably come out of the appointment with them telling me to drink more water and that's it.

Midterms are over, thank God. Now I can get back to my normal crazy instead of extra, extra crazy. Also, the class listings went up today so I was able to make a tentative schedule while sitting around bored at work. It looks like I will be able to take two nursing school prerequisites (Anatomy & Physiology 1 and Nutrition) next semester. I still need to take another semester of A&P, microbiology with lab, two semesters of chemistry and human growth and development, but it's a start. This will also make me more attractive to the one nursing school I am applying for now because while you can take the prerequisites the summer before the nursing classes start, the website says doing this will make you "less competitive".

I'm down to 6mg of prednisone and everyone says it looks like I am losing weight, which is not true it is just my face is not swollen from the prednisone anymore. But if they think that, why not? I gained 10lbs on the stuff and I want them off now.

Anyway, happy November!

Tuesday, October 26, 2010

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.

Monday, October 11, 2010

Complain and Whine

Well, this post is really nothing but a big complaint. I do have posts about actual topics formulating, but the brain power and time required to write them is more then I can expend right now. Today has been one of the worst pain days I have had in a while. I was supposed to go apple picking, but guess it is a blessing in disguise that it got cancelled.

It is mostly the lower part of my body that is having the most trouble. My legs are all sorts of sore and my naproxen and Tylenol are just not cutting it. I have spent a good portion of today trying to sleep it off, but that's not really helping either.

Sigh. I guess this is all rearing its head because I am not on 7.5mg of prednisone, which is the lowest dose I have been on in...well, a long time. Hopefully things get better.

Sunday, October 10, 2010

Hello Long Weekend!

Columbus Day is tomorrow which means no school! And furthermore, Tuesday runs on a Monday schedule and Mondays are my easy day! I will be spending most of tomorrow catching up on school work, but at least I will have the time to catch up.

I recently had a conversation with my dad and he told me I should cut back my hours from about 20 a week to 12-15 hours a week. Easier said than done since I am still broke working all these hours. He said he would help me out, but of course I feel bad about that.

I am also stressing myself out way too much about After Graduation. I did not make TFA, and I am disappointed, but not devastated. Everything happens for a reason and I am sure I will find something to do that will make me equally as happy. Whether that be in medicine or education or music business I do not know and that is what is stressing me out the most.

On the medical front, I started 7.5mg of prednisone today. I have been more tired and achy since reducing, but I hope I can continue. Honestly, pain is a reality in my life. Unless it is excruciating, then I can deal with it. I almost expect it. I can't tell if this is good or bad thing yet...

That is all for now. I hope everyone has a great upcoming week!

Wednesday, October 6, 2010

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.

Saturday, September 25, 2010

What's In a Name?

So I recently got a Twitter (follow me!) and have noticed some interesting things about myself in the process. My Twitter name is lupiestudent, because I meant for it to go along with this blog. However, identifying myself this way has taken a little bit of an adjustment. I have other accounts that do not use this name and seeing myself so clearly identified with my lupus throws me for a loop sometimes.

I guess this has led me to wonder how much of my life I want defined by my lupus. I live my life (whether smartly or not) like I do not have it. Whenever it acts up I try to go on instead of doing the things I know I need to do (like slow down and take a rest). So I guess I can say I live in a kind of denial about my lupus. When I see something that clearly states I have it, I just get uncomfortable.

There is a possibility that I will change my Twitter name in the future. There is also the consideration of future employers, insurance companies, etc. finding out about it and then having to explain the lupus. I try to keep both this blog and my Twitter as anonymous as possible. Well, as anonymous as you can with your picture and state listed.

So, maybe I will get used to seeing myself identified as a lupie and maybe not. I guess time will tell.

In other news, my prednisone taper is going...meh. I have had increased joint pain and an attack of pleuritic pain so bad yesterday at work that I had to lay down on my desk while my boss was out. Yes, on my desk because the floor was too far away. I really, really want to be off this stuff so I am going to push it as far as I can.

I hope everyone enjoys this first weekend of fall! Best season ever!

Tuesday, September 21, 2010

Adventures in Prednisone Tapering

I finally got the approval to start tapering my prednisone! It is a "very fast taper" according to my rheumatologist and both she and I are unsure about how my body will handle it but I am willing to give it a shot. I am tapered to 20mg a day on Sunday and will continue on that until next Sunday. Then I will decrease every week until 10 mg, then 2.5 after that. I see my rheumatologist again in the middle of next month.

All in all I just have been very, very tired but that could be for many reasons. I think the prednisone and my bakery schedule during the summer messed up my sleep cycle so I can no longer sleep in and wake up between 5:45 and 7:00 am every day. Occasionally I can get back to sleep but it is not a restful sleep. I am also extremely busy during the day so I know I am not getting enough sleep as I should.

When I saw my rheumatologist last week she gave my knees the diagnosis of "periarthritis" meaning that the ligaments and tendons are all involved as well as the joints. This is not surprising as I have contractures in my knees and cannot straighten them out all the way. She also suggested I speak to my primary care doctor to see a neurologist again about the increase in migraines/headaches I have been having.

Sorry I have not been posting that much. I am just so busy and all my free time has been dedicated to homework and resting. I hope I can get back to a regular blogging schedule as I have a few that I am working on.

Thursday, September 16, 2010

In Honor of Invisible Illness Week: 30 Things You May Not Know about My Illness

1. The illness I live with is: Lupus and endometriosis. You can throw a couple other things in there as well, but most relate back to these two.

2. I was diagnosed in the year: 2008

3. But I had symptoms since: 2002-ish

4. The biggest adjustment I have had to make is: Accepting the reality of chronic pain/illness and how it makes it harder to be a normal college students. I am constantly assessing the way my body feels to make sure nothing is seriously going on with it. I am unable to do many things my friends are able to do because it leaves me too tired and in pain or worse, in a full blown flare.

5. Most people assume: That I do not live with chronic pain.

6. The hardest part about mornings is: Pain level assessment and then moving if it is too bad.

7. My favorite medical TV show is: Hmmm...Trauma: Life in the ER? Because if I do pursue nursing/medical school then I want to work in acute care.

8. A gadget I couldn't live without is: My computer. Tried it. Doesn't work.

9. The hardest parts about nights are: I am one of the worst insomniacs I know. Also, my pain levels are worse at nights most of the time.

10. Each day I take: Immune system modifiers, pain medicine, medicine to keep my stomach happy with all the medicine, migraine preventative and hormones for the endo. In other words, far too much.

11. Regarding alternative treatments: They are all fine and good in conjunction with traditional medicine.

12. If I had to choose between an invisible illness and a visible one I would choose: Tough one. I feel like I would be judged less and understood more if people could somehow "see" lupus. If you were to look in my insides you would most certainly "see" endo, but that's a little difficult. However, I like that I look healthy, and when lupus made my hair fall out I was very self-conscious. So I guess I would choose invisible because of the way I militantly try to live my life as normal.

13. Regarding work and career: Still trying to figure this out. I have a general idea of what I want to do with my life and I hope lupus doesn't try to take that away from me.

14. People would be surprised to know: Most people I know now did not know me pre-diagnosis so I think they would be surprised at just how sick I was back then. It will be almost three years since my last hospitalization which was absolutely unheard of just a few years back.

15. The hardest thing to accept about my new reality is: The constant reassessment of abilities. I know what I want to do and I hate when my body slows me down.

16. Something I never thought I could do with my illness was: I never believed I couldn't do anything. As the saying goes "I may have lupus, but lupus doesn't have me". It may take longer or be done in a different way, but it gets done.

17. The commercials about my illness: Do not accurately portray it.

18. Something I really miss doing since I was diagnosed: Going out with friends and being able to enjoy myself instead of having to leave early because of pain/fatigue. And wearing heels!

19. It was really hard for me to give up: My perception of a "normal" college student/young adult.

20. A new hobby I have taken up since my diagnosis is: Blogging!

21. If I could have one day of normal again I would: Clubs/bars and actually enjoy it.

22. My illness has taught me: Compassion and unfortunately, who I can depend on and who I cannot.

23. One thing people say that gets under my skin is: I hate judgments about the amount of medicine I take. TRUST ME - I hate it too. Also anything about not looking sick, blah blah blah.

24. But I love it when people: Offer to help, because I hate to ask for it. And when people try to understand.

25. My favorite motto, quote, etc is: Nothing to do with chronic illness. "Once good thing about music, when it hits you, you feel no pain." - Bob Marley. But I guess that can relate to lupus.

26. When someone is diagnosed I would like to tell them: Hold on. One day there will be a cure. Just keep faith and do the best you can.

27. Something that has surprised me about living with an illness is: How alienating it can be. You really see the best and worst in people.

28. The nicest thing someone has done for me when I wasn't feeling well was: Make me soup!

29. I'm involved with Invisible Illness Week because: I want to raise awareness so maybe people will be less judgmental and more accepting and understanding.

30. The fact that you read this makes me feel: Great! Thanks for sticking through it!!

Sorry I have not been posting much lately. I have been so busy. I am hoping to get adjusted soon so I can get back to regular blogging!

Thursday, September 9, 2010

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!

Saturday, September 4, 2010

Back to School

So I leave to go back to school tomorrow. I am not packed, but I just finished my last shopping trip so I really have no excuse. Well, actually, not all the clothes are dry, so...

Anyway, this semester is gearing up to be just as crazy as all the other ones. I am going to continue working both jobs and take six classes, plus I just signed up for intramural soccer. It's a little bit of a crazy schedule, but I am hoping all this activity helps me keep off the prednisone weight. My biggest fear, of course, is weight gain. I can stand gaining it in my face, as I definitely have, but not anywhere else. The face will go down once I stop, but I have worked too hard to lose the weight everywhere else to go through it again.

I do not have a meal plan this semester so I will be entirely on my own for food. This is both good and bad. I can have control over everything I eat and control the fat, calories, sodium, whatever else, but I also will have to do more planning out of what I eat. Of course, I think I will be able to get into the dining halls sometimes when I eat with friends.

I'm looking forward to starting this year. It's my last as an undergrad (finally!!) so hopefully it will go well!

Monday, August 30, 2010

Lupus? What Lupus?

I have been thinking a lot about how to disclose illness to the people around you. Since I am going to be moving in with three people I don't know, I feel like it is important that they know I have an illness that can be completely unpredictable. If I get really sick and can't take care of myself, someone needs to know what is going on. But at the same time, disclosing can lead to awkward conversations and reactions you don't quite expect.

I never old anyone at the bakery about the lupus. I had my last shift on Friday (they never put me on the schedule this week, ugh) and so now I guess it does not matter. But if it was going to be a more permanent thing then I definitely would have told. My supervisors at my other jobs all know. One does not pay attention to it, which causes its own problems, and the other pays too much attention to it, which is also problematic. The latter probably more so because she is always offering "suggestions" that don't work. Like I should like to stand on my feel all day because then it exercises the joints. Um, no.

Disclosing a chronic illness is personal. It's up to the individual how and if they want to do it. It's still something I struggle with because of my almost militant quest to "appear normal". Even when I feel bad I don't want to look or act like I feel bad. I guess in the coming week I will have to decide how and when to tell my new roommates about my lupus.

Wednesday, August 25, 2010

But WHY Did This Happen??

I am almost recovered from my wisdom tooth surgery. I spent most of the time sleeping and today I went to check on my Netflix statistics and I watched somewhere along the lines of 19 episodes of Law & Order, both SVU and Criminal Intent, 8 episodes of Weeds and 21 episodes of The Office. But I promise this is not actually true as I kept the player going even when I was asleep. I promise.

Anyway, the teeth are healing nicely, I suppose since it's kind of hard to look down there. I did have one massive blood clot form that I was sure was going to destroy the rest of my teeth. But it, and all of its disgusting-ness is starting to go away. I am no longer swollen, but my regular prednisone rotundness is apparent. Stitches come out Saturday and that's that!
Looking back on it, I freaked out more than I really needed to. I have never had a cavity or any other tooth problem in my life. So why did my wisdom teeth cause so many problems? I guess its one of those things, like lupus, that the body does and we can never really figure it out.

Monday, August 23, 2010

Out of Wisdom

So my wisdom tooth extraction went fine, minus one freak out I had when the nitrous oxide mask was knocked off and I was convinced hey were going to snap my jaw in two. Right now I'm not in a lot of pain but I have a ridiculously large blood clot in the space where one of the teeth used to be that won't stop bleeding and swallowing all the blood is making me feel a little sick. But I have stayed in bed for the most part and watched Netflix streaming video more than I care to admit. I love Netflix.

I am scheduled for an MRI on Thursday of my neck. I have a lump there that I previously wrote about being an extra rib. However the doctors want absolute confirmation of that especially since I have been having so much pain in my chest and jaw recently. I'm going to ask to be sedated because I tend to freak out after about 15 minutes in that little tube.

That's all for now. The weather is extremely stormy and I am loving it because I feel no obligation to expose my chipmunk cheeks to the world. I am scheduled to work tomorrow, but I think I will be up to the task.

Thursday, August 19, 2010

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.

Wednesday, August 18, 2010

Lesson Learned: Still Not Recovered From Saturday

So I negotiated my way out of going to back to the Emergency Room tonight after speaking with my rheumatologist. She will not be in clinic the for the next few weeks and I have been pretty miserable for the past little while. Saturday was certainly no help and I now have fully learned my lesson that I need protection in the sun. I have been having joint pain, migraines, a flare up of the chest pain that's pretty bad and I have been completely exhausted. My doctor really wants to get a better handle on the chest pain since I am on 25 mg (!!!) of prednisone right now. So she told me she would try to have me seen by another doctor in the arthritis clinic tomorrow and if that is not possible then I will have to go back to the Emergency Room. Sigh.

So to all my online lupie friends, REMEMBER YOUR SUNSCREEN!!! This is so not worth it, even though I had a lot of fun.

Monday, August 16, 2010

Trying to Make Some Decisions

I have been doing a lot of thinking/research about what I want to do when I finally get my B.S./B.A. in psychology and communication. I had previously wanted to work in artist management, and while this still holds a lot of interest foe me, I do not see my career going in this direction. There are several of reasons for this, not the least of which finding a job with health insurance while trying to this would be all but impossible.

This leaves me with two other areas that I am interested in. The first is school psychology. School psychologists collaborate with school districts, parents and teachers to make sure that kids with behavioral, medical, social and learning problems have access to the care they need to succeed in school You can either obtain a M.Ed or other related masters degree in school psychology or you can go all the way with a Ph.D. Being the way I am, I would probably want to go with the Ph.D because the autonomy you have is a lot greater. You are eligible to become a licensed psychologist (and therefore actually use "psychologist" as your title and not "psychological associate" or something like that) and you can also practice in private practice, therefore opening up more avenues for teaching, research and salary.

The second is medicine. Ever since I was a little girl I have wanted to become a doctor. Now, however, I do not necessarily want to become a doctor but do something related to the medical field. Most of my research has been focusing on becoming a nurse practitioner (NP). NPs practice primary care on a level that is often comparable to physicians. It was when I was under an NPs care that I finally received my diagnosis of lupus, and I credit the ay she listened to me and didn't just write me off like so many of the physicians I had seen had.

I am going to be applying to at least two programs for after I graduate. The first is the Teach for America program which is a two year program where you go into a low income community and teach there. The current acceptance rate is about 8%, so I am realistic about my chances. The second is a Direct-Entry MSN program at a small school in my hometown. This program allows me to take the prerequisites before the actual nursing classes commence. After the first year you obtain your RN licensure and then you can either full-time or part-time get your masters and be eligible to become an NP.

One last option I am looking into are post-baccalaureate pre-medical programs. There is still some part of me that wants to be a doctor, although medical school and all its craziness is totally unappealing. I might try for one of these programs as well. Once I figure out how I am going to pay for the GRE I will also make a decision about what school psychology programs I want to apply to.

If I do not get into any of the programs than I hope to get a job as a research assistant in a child development lab or something like that or become a residential counselor in a group home for children or an acute care psychiatric hospital for children. While I am working I would take more prerequisites for nursing and then reapply in about a year to more programs.

That's my plan and I finally feel comfortable with it. I am going to have to put off, at least, my dreams of working in the music biz, but I am OK with that. Working with children in some way has always been where I knew where I would end up. Whether that be in the schools or in a medical setting, I don't know, but I know I will be fulfilled and happy either way.

Sunday, August 15, 2010

Sun and Prednisone

I spent all day yesterday in the sun without any protection. We had a family cookout and most of it took place in the back yard of my cousin's house which has very few trees. It was a lot of fun, but by the time 11 pm rolled around and we finally left I was totally nauseated and achy. I spent most of the night up with my stomach and joints. If it weren't for my nemesis and savior prednisone, I'd still be in pretty bad shape.

I'm not completely over yesterday. I'm still achy and really, really tired. Being out like that was a doubly bad idea since I have been feeling "off" for almost a week now. I can't pinpoint the problems, but something has been up. Maybe my most recent blood test results will show something.

I am scheduled to have all four of my wisdom teeth out on Friday. They are all pretty impacted so I am not too thrilled about getting them out. I have been putting off this surgery for about 8 years now. The cost will be about $900 dollars and that's more than I can mentally wrap my head around spending to be swollen and in pain. But I was finally convinced I need them done and after rescheduling twice, the time has almost come.

I am a little worried about being on the prednisone now that I have decided to have the teeth pulled. I know prednisone can delay healing and increase risk of infection. Since my doctor is 2+ hours from my house (cheapest I could find), I would really rather not have any complications. I was going to stay at my aunt and uncle's for the weekend, but know that I would much rather be at home. The plan is to fill my pain medicine out there and then come home that night. If any problems occur, then we will just deal with them then.

I hope everyone has a great week!

Wednesday, August 11, 2010

My Other Autoimmune Disease

I thought I should probably do a post on endometriosis because it is something I have known I have had since I was about 15 years old and was once a huge part of my life. According to the Mayo Clinic
Endometriosis is a disorder of the female reproductive system. In endometriosis, the endometrium, which normally lines your uterus, grows in other places as well. Most often, this growth is on your fallopian tubes, ovaries or the tissue lining your pelvis.

When endometrial tissue is located elsewhere in your body, it continues to act as it normally would during a menstrual cycle: It thickens, breaks down and bleeds each month. Because there's nowhere for the blood from this displaced tissue to exit your body, it becomes trapped, and surrounding tissue can become irritated.

Trapped blood may lead to cysts, scar tissue and adhesions — abnormal tissue that binds organs together. This process can cause pelvic pain, especially during your period. Endometriosis also can cause fertility problems.

I was 10 years old when I got my first period and started having problems when I was 11. I distinctly remember one day trying to walk to my grandmother's house after school and having to lay down in the middle of the street because I was in so much pain. I also bled very heavily for often longer than a week. Eventually the pain became chronic. I was 2004, just before I turned 16, that I had my first laparoscopy. They found endometriosis on the lower part of my colon and started me on injections of a medicine called Lupron Depot. About two years later I had another laparoscopy.

I no longer have chronic pain from my endometriosis and I do not take the Lupron anymore. I am on a medicine called Aygestin and it makes it so I do not get periods.

There is some debate as to the cause and nature of endometriosis. There seems to be some consensus, however, that it is an autoimmune disease. I even found this link here that links endometriosis and the lupus anticoagulant antibody and the antinuclear antibodies. As far as I know I do not have the anticoagulant antibody, but I do know that I have the antinuclear antibodies.

It is really interesting to me how once you have one autoimmune disease it puts you at risk for more. If I pursue a career in medicine, which seems more and more likely, this is something I hope to study further. I will post later all about how indecisive I am about my future career.

Sunday, August 8, 2010

Hiding Nuts

One of my good friends recently moved to New York City for a job and had nowhere to stay so I arranged for her to stay with my grandmother until she can find a place. I also recently just purchased a new computer (a lovely, wonderful MacBook Pro) and it comes with a camera built in. So I decided to step into 2010 and download Skype and spoke with my friend who is staying with my grandmother last night. She brought her computer into my grandmother's room so that I could speak to her as well. While speaking with my grandmother she informed me that my face looked fat. Thanks, grandma, for you honesty.

I didn't think that this was too much of an issue until last night when I was talking with my grandma. I'm playing around with the idea of starting a Youtube channel about lupus as well so I decided to do a test run today. After I recorded it and started playing it back I realized that my grandma was right. My cheeks are looking very reminiscent of a chipmunk hiding nuts. Sigh, I really hate this stuff.

Since I am feeling pretty vain right now and am a little horrified at what I just saw, I'm not sure I will continue with the videos until I can get my cheeks to look a little more normal. Of course, maybe having chipmunk cheeks would be better for the videos because they are something those with lupus and other autoimmune diseases often have. If I do decide to continue with the Youtube channel I will be sure to post a link to it here as well.

Friday, August 6, 2010

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.

Thursday, August 5, 2010

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.

Tuesday, August 3, 2010

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)

Wednesday, July 21, 2010

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!

Friday, July 16, 2010

ER Visit

(You see, I knew I would start posting as soon as I made the announcement that I might be gone for a while)

I spent yesterday evening at the hospital. This was my first time being sent there for lupus-related reasons since my diagnosis. I was having chest pain when I breathed that just wouldn't go away so my rheumatologist sent me over. The diagnosis, as I thought, was pleurisy. For a few tense moments, after my EKG and some heart imaging, the thought was that I had a pericardial effusion. But that was not the case and I was out of there in about 5 hours.

The chest pain is still there but I can live with it until my appointment on Tuesday. There are some things related to my heart that I need to talk to the doctor about, but it is safe to say that I will be OK. I just cant go to the gym which actually bums me out a lot.

This was my first ER visit in a year, which pre-diagnosis was unheard of. I also haven't been hospitalized since October 2008, which is wonderful. I was averaging every 4-6 weeks being seen in the ER or being hospitalized in my high school days.

I'm glad everything is working out and I hope everyone has a good weekend!

Wednesday, July 14, 2010

Off For A While?

I am starting my second class of the summer today. It is pretty intense with papers, discussions, readings and about 4-5 normal length movies to watch each week. So I am doing something new and warning everybody in advance that I might be absent for a little bit (now watch me blog every day...)

Sunday, July 11, 2010

When You Love Someone

An interesting thing happened the other day. I came home from my internship and the instant I came in the door I felt that something was not right. I didn't know why I felt that way but I knew something was off. I started calling for my dad because I knew he should be home and after a couple of calls he told me he was upstairs. When I went up there was blood all over the bathroom. He had cut his hand trying to install the air conditioner and it was bleeding pretty badly. It was a new air conditioner and when I asked him about it he said "I just wanted the house to be cool for you when you came home." It broke my heart that he had hurt himself trying to do something nice for me.

Now this injury, despite the disconcerting amount of blood, was not very serious. No stitches were needed and there isn't even really a scar now. But seeing my dad hurt was so disarming for me; I can't imagine what things must be like for him. He watched his wife die from an autoimmune disease and it must be horrible to watch his only child suffer from one.

My dad and I are very close and I love him with all my heart, and I know he feels the same about me. Watching him with just a cut on his hand was hard for me, imagine watching your daughter go through countless hospitalizations, surgeries and losing feeling in her legs...twice.

I hope to keep my dad around for a very long time.

Tuesday, July 6, 2010


It is seriously hot. The temperature reading in my dad's car measured 103 when I was driving home. And it is extremely humid. Luckily my dad let me drive his car into my internship today so I didn't have to drive my car with no air conditioning. Unfortunately today was probably the busiest day I have had in my two summers there and the A/C was off a lot of the time because we can't talk on the phone and have it on because it is so loud.

I am back home now with the beginning of a migraine. I am hoping it will work itself out if I drink some water because I don't want to take my migraine medicine because it makes me sleepy and I want to go to the gym later this evening.

Luckily, I have only had my sun rash a little bit on the 4th of July. It was minimal and it didn't even itch/hurt. I just noticed it when I looked down at my legs.

Anyway, I am so tired and so hot right now and the heat from my computer is annoying me. Hopefully I will be the proud owner of a new Macbook Pro by the end of the week because our financial aid awards are supposed to come out in the next few days.

To everyone in the Northeast, do your best to stay cool. And specifically for the lupies (but for everyone else as well), do your best to remember sunscreen and make sure to take rests when you need them.

Friday, July 2, 2010

Gearing Up For the Heat

The past few days here have been really wonderful. Not too hot, not too cold with beautiful bright skies. I have trouble with the sunlight, so I haven't been running around too much outside without some protection, but I am still enjoying the weather all the same.

All this will change on the 4th when we get a week of 90+ weather. Oh. joy. And to top it all off the humidity is supposed to ramp up as well. I really, really have trouble when it gets like that outside. I swell and get rashes and fevers and feel miserable. On the 4th my dad and I are going to his friend's lake house. We go out on the boat and have a cookout and talk. Later, when the sun goes down, each house on the lake puts on a firecracker show, with each house trying to outdo the others. I always think the house we are at does the best, but I might be biased.

The 90 degree weather is similar to what we had in NYC when I went last weekend. I stayed two nights with my grandma who lives in Brooklyn and one night with my friend who is subletting an apartment in Manhattan for the summer. It was so much fun, even when I got ugly itchy/painful blisters on my legs because of the sun. And even when my knees and fingers swelled up and I almost passed out in a boutique. Seriously, I had such a good time. I can't wait to move to NYC (maybe one day).

So, for the next few days I am really, really going to have to be diligent with my sunscreen and listening to my body. I kind of overdid it in NYC, but luckily things didn't get too bad.

In other health news, I have to go see an endocrinologist because I keep forming stones in my kidneys and then of course my gall bladder which I had out in January, My calcium levels tend to be very high even though my Vitamin D tends to be low and I am osteopenic. So I need to sort all that out.

I hope everyone enjoys that 4th of July and I will get my last post updated soon!

Thursday, July 1, 2010

Wow, Went AWOL

Sorry for the lack of posts. I have been busy with school, my internship and I even went on a little mini-vacation to New York City.

First, I would really like to thank SR at Grad Student With Lupus for nominating me for the One Lovely Blog Award! In keeping with the acceptance criteria, I will now nominate 8 other blogs (in no particular order) that I think are definitely worthy of your time. Once I can come up with more (which I know there are, but I am at work...) I will update this post.

1. Flow at The Life of a 20-Something With Lupus. This was the first lupus blog I started reading. Her stories are always inspiring and her ability to keep humor and hope in the face of such challenges is awe inspiring. Please check her out if you have not already.

2. Manic Mom because she is hilarious and deals with lupus on top of raising three kids. She is an inspiration for the type of mother I want to be one day.

3. KirBir at Not Standing Still's Disease. I love reading blogs by other college students and their experiences with chronic illness. Definitely check out this blog if you are interested in this like me!

4. Sara at Despite Lupus. She has written a book called Despite Lupus that I unfortunately have not had a chance to read. It is first on my reading list though when I get some income again!

5. Hanah at Capturing JRA through Horses. She is another young adult dealing with chronic illness, so her perspective is always of interest to me.

6. Laurie at A Chronic Dose. Everytime I see an update from her I get ridiculously excited.
7. Rheuma Girl at There's Always Room for Improvement. I love her humor and the words used in the UK that we don't always hear in the States.

8. Skye at Stuck at 21 with RA; Coping with It. Another perspective from a young adult.

In other news, some stuff has been going on with me health wise and I want to talk about my trip to NYC. That will come in a future post as I should probably get back to work.

Saturday, June 19, 2010

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.

Monday, June 14, 2010


Over the past few months I have been learning new things about my body. One of the most interesting things is that I have an extra cervical rib. For years I have had a mystery bump right underneath my collar bone on thee right side. Doctors have all felt it and tried to determine what it is. When my blood work started coming back abnormal because of the lupus, this lump caused them to think I had lymphoma (which of course scared the daylights out of me). However recently two doctors have determined that it is an extra rib. Only 0.2% of the population has one. They can cause some problems, but for right now it is not bothering me and so I'm not worried about having one. It just makes me feel very unique!

I have another congenital bone problem with my tibias, or the shin bones. They both are bowed to the side which causes my feet to turn out like a ballerina's. Unfortunately this does cause some problems for me and I think it contributes greatly to why the joints in my legs hurt a lot more than the joints in other parts of my body. Of course when other joints want to act up (like my right shoulder now) they really get going.

Also I have the congenital cataracts to deal with which have never really been a problem before this past year and a half. It seems like I was born with some interesting features to my body. There are a couple reasons I think this happened.

1. My mother had an autoimmune disease called sarcoidosis while she was pregnant with me. Her case was very severe and she was on very high doses of prednisone. Of course prednisone is deemed safe in pregnancy, but it has been speculated that the prednisone was the cause of my cataracts. Unfortunately my mother lost her battle with sarcoidosis when I was 5 years old, and seeing the effects it had on her make me resist prednisone even more.

2. I was born quite early. 2 months in fact. The details are a bit fuzzy as to the circumstances surrounding this but most of what I gathered involves "a lot of blood" and me being "impatient". Whatever the reason, I was preemie. I was pretty much OK once I came out and spent only a little bit of time in the NICU before I came home.

Whatever the cause of these issues, I may never know. I just have to accept my unique body and the lupus that comes along with it!

Sunday, June 13, 2010

Some Good News

I got back into the apartments for next year! I am beyond thrilled by this because my schedule and everything was based on me living there again. Also my house is packed with stuff for the apartment and if I did not live there then all this stuff would have to stick around for another year.

I went up to school to see the eye doctor on Friday. Since I started taking the Plaquenil, I have to go back and get a visual field test in about a month. Then we will also talk about having the cataracts removed which I really want. The doctor wants me to try getting new glasses with a special coating on them first.

Today I went to the gym for the first time since I had my kidney stones. It passed last night and I am not in pain from them now so I thought I could try going back again.

I am still jobless but this news about the apartment next year has lifted my spirits considerably. My online class is going well, I just have to find the motivation to do the work. I have to watch a 2 hour documentary tonight and I have a mini-paper due on an article tomorrow.

Hope everyone is doing well!

Wednesday, June 9, 2010

Turned to Stone

Unfortunately I am dealing with kidney stones at the moment. It is not the first time I have had them. One time they kept me in the hospital for a week and I was discharged on my (18th? It's hard to keep track) birthday. No hospital admissions in sight for me this time around though, I'm dealing well with them on my own.

My online class started yesterday and I have done none of the reading yet. I have also not gotten back into the apartments for next semester, found a job, and my financial situation is still pretty awful. All around I'm just not in the best mood.

That's it for now. I have to go to school n Friday to see the eye doctor again so I will post again after that.

Thursday, June 3, 2010

What Makes a Good Doctor?

I often wonder what qualities I like to see in a doctor. I am writing this blog because of my recent experience with my new rheumatologist and another one that I am going through right now. On Friday I called my eye doctor because I am really tired of how much my eyesight is diminishing because of the cataracts I have. They need to come out, but since that will change my eyeglass prescription I don't want to spend all the money to get them just to have to spend all this money to get it changed again. The doctor never called me back and I had to call again on Wednesday. Now I understand this was by no means an emergency and it was a holiday weekend, but I do not think that is acceptable. I am having a real problem with my eyes that leaves me completely frustrated most of the time because I can't see nearly as well as I should and the strain is giving me constant headaches.

I also mentioned my problems with my new rheumatologist. She prescribed Plaquenil, but my insurance wants a prior authorization. It has been over a week and the authorization has still not gone through. While I am not thrilled to try Plaquenil again because of the effects it had previously on my stomach, I do think waiting over a week is a bit ridiculous.

I guess my ideal doctor would be caring, a good listener, and available. My rheumatologist at school fits the bill, but she is the only one (out of many, many doctors I have had) who really does. In thinking about going into health care, I read many different articles and blogs written by and about health care professionals. I understand that they are often overworked and have a very demanding schedules, but what about our needs as patients? I often feel like a burden to my doctors and I have delayed or just plain not sought medical attention when I thought I needed it because of this.

This problem is bigger than just certain doctors. It is part of the problems facing our heath care system in general. However, there are certain things that I expect from my doctors and fins unacceptable and other things that I can give some leeway with.

Anyone else have any thoughts?

Friday, May 28, 2010

Not Impressed

Sorry for the gap between posting again. I had written a long, thought out post a couple days ago and erased it by accident and couldn't retrieve it. I basically described my meeting with my new rheumatologist. I don't really like her and my father was not that impressed either. She made some recommendations that I don't think I will take her up on. The only thing I said I would do is try Plaquenil again. I refused the prednisone (again) and some other things she suggested. She seems to be in favor of polypharmacy and I am certainly not. She also just seemed bored while I was there.

I gave my blood to some blood bank for lupus research while I was there. This rheumatologist is affiliated and located in a big research hospital so I have opportunities to participate in research. I also consented to be contacted by the people running a study on Vitamin D and lupus. I take a weekly megadose of Vit. D because my levels tend to be pretty low.

My summer classes start June 8 and are available for preview on June 1. For some reason I am looking forward to starting them although I know my tune with change once they actually do start.

I have been going to the gym regularly since I have been home. I want to lose 10 more lbs before school starts again. I want to go again tonight but I have had a pretty bad day and I am very aggravated so I just want to go to my favorite ice cream stand and watch the Celtics WIN.

That's all for now. Enjoy the holiday weekend!

Wednesday, May 19, 2010

Sick Day

Unfortunately, soon after writing yesterday's post, I started to feel a little tickle in my throat. By this morning, that tickle evolved into a full fledged sore throat. Of course these things happen when I am 100 miles away from my doctor, but it is not bad enough that I feel like I need medical attention. Since none of my stuff is even remotely unpacked (which I may explain in another post) I can't find a thermometer to see if I am running a fever. If I was, then I would be a little more concerned.

I wanted to go to one of my really good friend's fashion show today, but now I am unsure if I will make it. Even though the Cellcept has made me feel really good, I still understand my limits with lupus. And because Cellcept is an immunosupressant, I really have to be careful.

My plan for now is to stay in bed and watch movies and drink tea and soup. It is a rainy, chilly day here so it is especially conducive to not doing much.

Also, I made Dean's List!

Tuesday, May 18, 2010

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!

Saturday, May 8, 2010

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.

Monday, May 3, 2010

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!

Friday, April 30, 2010

What It Comes Down To

As I mentioned in my last post, I have been doing a lot of thinking recently. The more I think, the more comfortable I become in my decision to stay an extra year in school. One of the main reasons I want to do this is for health insurance. My state, Massachusetts, mandates everyone have health insurance. However, I do not think I want to stay in Massachusetts after I graduate. So if I do not get a job, or go to a school, that offers health insurance, then I am out of luck. This would necessitate me living in Massachusetts to be sure I get the coverage I need.

I do not like that a lot of my decisions for my future are based on my health, or, more specifically, my health insurance. There are so many things that I want to do that I feel are being limited because the toll on my body would be too great, or it is kind of off the beaten path and I may not get insurance.

I bet this is something a lot of chronically ill young adults experience, and something that I would definitely want to discuss in the support group I want to start. It is something that has been weighing pretty heavily in my mind.

It is going to be a wonderful weekend here in MA. I am going to see my dad tomorrow and I have my last 8-4 shift on Sunday! I hope everyone else has a great weekend.

Tuesday, April 27, 2010

Got Me Thinkin'

I've been doing a lot of thinking recently about many different things. One of the main things is what I am going to do after college. I have a lot of different interests and jump from one idea to another on a regular basis. I really like developmental psychology, school psychology, nursing and music management - now I am seriously considering the Teach for America program.

I know several people doing Teach for America and one told me that the program likes for successful applicants to have leadership experience. So this got me thinking. One thing I could think of is starting a support group for students on campus with chronic illness. I do not think any such group exists and it is important for students to be able to reach out to one another. I know that I am frequently overwhelmed by the prospect of having lupus for the rest of my life. I am just beginning to come into my own, develop who I want to be. Unfortunately chronic illness is a factor.

This has to be the same for other student whether they have lupus or something else. Being our age and dealing with all the uncertainties that illness brings is difficult. I plan to bring it up with my primary care physician on Friday when I have an appointment. He can probably tell me if something on campus exists, and if not, how to go about setting it up.

I think this could be a good resource on campus AND provide me with the leadership experience I need for possibly applying to Teach for America (or grad school, or a job....)

I plan to write a post later about my decision making for staying an extra year in school and how lupus is factoring into my decision for after school.

Have a fantastic week!

Friday, April 23, 2010


Something I struggle a lot with is not feeling like I fit the mold of a "typical college student". I get exhausted so easily that I don't normally go out. I am 21 years old and I never go to the bars or clubs around town and I hardly ever go to just regular parties. There are a few of reasons for this:

1. Besides having lupus, I don't like the feeling of being drunk at all. I don't get it. I only like to drink to the point where I am "friendly". Whether due to my medications or my body chemistry or whatever else, it does not take much to get me "friendly".

2. Then there is the lupus itself. Just the energy of dressing up and looking cute can make me sleepy and achy. I really am no fun when I get like this and my friends notice it right away and it brings them down too. I hate not being able to do these things, and share in these experiences, but I really am miserable by about two hours in.

3. The recuperation period for me takes a long time, and I simply don't have much time. Between my six classes and two jobs, I don't really have the time to spend trying to recover. It's much easier for me to do things that I know won't take a lot out of me.

The reason I am writing this post is because I am currently sitting at home, 100 miles away from school about to go to bed at 10:45, and the rest of my school is partying it up. It's basically our spring weekend and there are parties and dances all around campus. I was so exhausted and out of it I decided not to drive home and spend my money (oh, my precious money) to skip work today and take the bus home.

But after all this, I still have to ask the question "What is normal?" I have to accept that this is what it is for me. College students come in all varieties, so fitting some media induced or stereotypical mold is not realistic. Maybe one day I will actually come to accept this.

Thursday, April 22, 2010

Weighty Issues

I finally got around to this post...

I was about 14 years old when I was put on the medication Depakote for various reasons. At that time, I was a stick. I weighed about 125 pounds and was about 5'4. The time that I got put on the Depakote was not a good one: I was going through a very hard time, had just been hospitalized and basically felt like my world was falling apart. The reasons I went on the Depakote (and various other medicines) are over with. It's part of a time in my life I do not want to revisit.

Anyway, I didn't know what they were giving me, but I took it anyway. I got out of the hospital about a week later, picked up my prescription, and read the side effects. "May cause weight gain" was a prominent one. I scoffed at that. I was always a tiny little thing and I could not imagine a medicine changing that. I was completely wrong. Six months later, I had gained 55 pounds, and I was not done.

The weight did some crazy things to my body. I tested positive for Type 2 diabetes twice, but luckily the sugar always came down. I did get the diagnosis of insulin resistance however and I was really scared because I did not want diabetes, but I also did not know how to lose weight on the medication.

In addition to diabetes, my heart and blood pressure started to have a hard time with the weight. I wound up in the emergency room more than a few times because my blood pressure would get so high that I would become dizzy or I would be having heart palpitations. The doctors found "changes" on my EKG, and they even once had to do a full workup for a heart attack. I was probably about 16 years old.

I'm not quite sure what the highest weight I reached was. Somewhere between 200-210 pounds would be my best guess. My skin was covered in stretch marks and my self-esteem had plummeted. I had considered myself a good looking girl but I could no longer stand to look at myself in the mirror anymore. My body had changed so quickly and I was miserable. I could no longer walk very far or wear my clothes.

In my second year of college I decided enough was enough. This weight needed to come off and the only way I knew how to begin this was by stopping the Depakote. So I did - cold turkey (which is definitely not advisable, but I did anyway). Things went well until the migraine hit. I was in migraine hell and ended up spending about five days in the hospital with a steroid drip to break it (one of the first clues to my lupus). The theory is that, as Depakote can be a migraine preventative, it was keeping the migraines at bay without me knowing it.

Even with these migraines, I wanted to continue to be off the Depakote. I felt...lighter. I had been on doses on Depakote before that were far too high when they measured my levels and I just felt so much better being off of it.

The weight did not come off over night, and I am still about 20 pounds heavier than when I started. Most of the weight was concentrated on my stomach, and that's where I still carry most of my weight now. From my heaviest to this day, I have lost somewhere between 55-65 pounds. It has taken me about 2 years to do this by changing my eating habits and by getting as much exercise I can tolerate. I am finally within a normal BMI, but I still want to lose about 10 more pounds.

My weight is one of the reasons I have struggled with going on prednisone. I have worked so hard to lose this weight that the thought of gaining it back is so scary for me. I know that there are a lot of people out there with lupus, or any other autoimmune disease, who are struggling with their weight. These drugs are not kind to the body - but one day THERE WILL BE A CURE and you can come off it. No matter what you look like on the outside, nothing can change who you are on the inside. I have learned the hard way that you need to accept your body.

There is a quote on the wall of my dorm that says "If you talk to your friends the way you talk to your body, you wouldn't have any friends" (I think that's right...). It is so true. I am still learning this even though I have lost a good portion of my weight. I do not, and may never, look the way I used to. I still have stretch marks covering almost every part of my body. I can still look at myself and hate what I see. But it's time to accept it. That's all there is to do.

Tuesday, April 20, 2010

Her Diamonds: A Confession of My Love for Rob Thomas

As I sit here and try to write a critical review on a short film that I really do not care about, I thought about making this post. I have been a fan of Rob Thomas ever since his Matchbox Twenty days. I fell in love with that band from the first time I heard the acoustic guitar on the song "3AM". Every word spoke to me, and I was obsessed.

Anyway, I have calmed down a bit. Matchbox Twenty has also calmed down a bit, but Rob Thomas' solo career has really taken off. While I still have a strong preferance for Matchbox Twenty, Thomas' voice still speaks to me. Especially in the song below. "Her Diamonds" is a song he wrote for his wife who suffers from a "lupus-like" autoimmune disease. Hearing Thomas' amazing voice describe what his wife goes through, and his reaction to it, had me hooked. I'm also glad he told the backstory because this song was very popular and I think helped to spread some awareness about autoimmune diseases.

Enjoy the song and the video!

Sunday, April 18, 2010

Winding Down

So this semester will be ending in the next few weeks. May 3 is the last day of classes and then we have finals for the week after that. I only have two finals, Spanish on the 6th and Media Programming on the 11th. Until then, though, have so much to get done. I have a group project and a paper for my New Media class, Spanish work, Media Programming work, a Psych/Lit exam and paper, a Plagues exam and last but certainly not least, my Writing for Comm case study.

My case study is examining portrayals of mental illness in females in the movies Prozac Nation and Girl, Interrupted. It's been A LOT of work, and I cannot wait until it's done. I have learned that, while I do not like research papers, I like primary research even less. Unfortunately, that's the stuff school is made out of. I am sure I would like it a lot more if I wasn't so stressed. It is a topic I am very interested in and ties in well with both of my majors.

So that's it for now. My lupus is still giving me trouble, but I hope to last the rest of the semester without too much trouble. And it helps that tomorrow we have no classes because of Patriot's Day. I worked both today and yesterday and I could really use the break.

Hope everyone has a good week!

Thursday, April 15, 2010

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.

Monday, April 12, 2010


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.

Sunday, April 4, 2010

Opening Day!

I am a Boston sports fan. Especially baseball. The Celtics won against the Cavs today, and its opening day against the Yankees tonight. This is the start of summer for me. There is nothing like Fenway during baseball season.

Anyway, heading back to school today after a delicious Easter dinner with my family. I'm sad to be going back, but I know I have a lot of work to do. I am really glad I didn't go to work today as I am just starting to feel better and working my shift would have probably set me back another week.

Has anyone seen the documentary Sicko by Michael Moore? I watched it last night and finished it this morning. I recommend it. It has me thinking a lot. Maybe I will write a post about it later.

Hope everyone has a great start to their week!

Saturday, April 3, 2010

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!

Wednesday, March 31, 2010

Not Ending

My joints were so bad today. I got up and got dressed to go to class. I even walked out the door, but then I turned right back around and got into bed until my third class. I called my doctor and she said to rest for the day and ice/heat my joints (but of course I couldn't, I HAD to go to work...) and call her in the morning. She said if it is not better then I will have to come see her. Problem is I don't have a car right now. So I am thinking I might just go home and have her refer me for an emergency appointment at one of the hospitals there. Or my dad said he would drive up to take me or have my aunt/uncle take me but I don't want to inconvenience them.

This is so frustrating. Everything I do hurts and I have all but lost my appetite. That is so unsual for me. I had a bagel for breakfast and I got Indian food for lunch. I at maybe half of it at best. I ate the pieces of chicken, some rice, some lentils and a little piece of naan. I just ate dinner which was a tiny bit of chilli and rice I made Monday. I did have two cookies at work because they had been handed out for free where I was eating lunch and I decided to have them there. That's it for the day. I consider myself a hearty eater so that is really weird.

Also, I have blood in my urine. I don't think this is from bleeding because it has increased over the past few weeks, which my bleeding has not. I really hope my kidneys are doing OK and that they continue to. My doctor said the results are "borderline" so a visit to the kidney doctor might be in order.

I am not on prednisone. I really want to avoid it.

That's all for now. I guess I will decide whether I am going home tomorrow and if I need to see my rheumatologist.

Tuesday, March 30, 2010

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.

Sunday, March 28, 2010


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!

Tuesday, March 23, 2010

Sorry So Late!

I arrived back to school Sunday afternoon and I did not go to work. I know that when my paycheck comes around I won't be too excited, but I thought it was a good decision then. I have been having a hard time with my joints. My hips, knees and now my ankles are all tender to the touch. This is not new for my knees, but it rarely happens to my hips and this is the first time it has happened to my ankles. I called my rheumatologist and she suggested arthritis cream and hot and cold packs. I've been doing that and it hasn't helped. I was doing that before she told me to. But I said I would give it another 48 hours, so she is getting a call from me tomorrow.

I hate feeling like a burden to the doctors but its getting real tough. It hurts to sit in a chair too long, it hurts to stand too long and it hurts to put my feet back on the ground after I have been laying down.

My shoulders and wrists have been bothering me as well, but not as much. My wrist has gotten a lot better and I think is nearly back to full strength. But it still aches in a very lupus-like way.

School is going well. I did well on my communication midterm which I was nervous about and I did excellently on the paper for that class.

That's all for now!

Thursday, March 18, 2010

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.

Wednesday, March 17, 2010


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.

Thursday, March 11, 2010

Rheumatologist Update

So I saw my rheuamtologist today. I apparently have tendonitis in my wrist which is why it is so weak. She also offered to switch me to CellCept if my insurance approves it so I will have to call them tomorrow. She also offered to have me see a kidney specialist, but since the treatment for lupus nephritis is what I am doing now, I see no need. There are no overt signs that my kidneys are in a lot of danger, just what was seen on the ultrasound. I also really don't want a biopsy.

I got my blood tests today from a couple weeks ago after I reduced the Imuran. They are pretty unremarkable. My complement levels are still normal, but they did drop off a lot. Hopefully that won't become an issue. My CBC was a lot better than it has been in a while, which was a nice surprise.

Spring break is tomorrow and my dreaded comm midterm is over!! I have a Spanish homework due tomorrow and also a small quiz. I have my "pitch" for my case study and I still really don't know what I am doing. My teacher is a TA and she is not very good at explaining stuff. I'm totally lost. I know I want to do something on the show Boy Meets World because I can quote almost every episode word for word. But I'm not sure what I want to do on that show, and I am not sure what I am supposed to do. I messaged a friend in the class who has already had her pitch. Hopefully she will get back to me and help me out.

I want to leave school around 12:30 in the afternoon so that I can get home before rush hour. Hopefully I manage to stick to that timeline!