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.

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!

oral

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.

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.

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.

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.

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.

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!

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.

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.

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.

So Disheartening

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

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

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

A Year Older

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

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

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

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

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