A Ridiculously Overdue Update

Sorry for the lack of posting!! Life has been crazy busy with full-time work, full-time school and trying to get a side project I have built up into an actual business. Right now I am enrolled in Anatomy & Physiology I, Statistics and Organic Chemistry. It has been real difficult trying to balance both work and school. I submitted my first completed grad school application today so wish me luck!

The most important medical update comes from the orthopedic surgeon. Basically, my legs are a mess. It is going to require extensive surgery and rehabilitation to fix them, but I really do not have another option right now. My hips and knees are being damaged by the rotation of my legs and all the soft tissue abnormalities that go with it, so it is time to fix it before it gets worse.

My orthopedic surgeon is consulting with a specialist to see how the surgery would go. I'm not sure if it is just my tibias that need derotaion, or if the femurs need it as well. Hopefully I will get some answers soon.

Bad Blogger

Hi everyone!

It has been another long time between updates. Sorry about that. Here is what has been going on in my life the past few weeks.

1. As I mentioned before I FINALLY graduated from college! I was looking for a job and I finally got hired at one that I think I will really enjoy and will allow me to do my nursing prerequisites. I will be working t a residential school for children with autism. It will be a lot of challenging work but I think I am up for it. I also think that the rewards I get from the job will outweigh the stress. I start tomorrow!

2. I started my chemistry class. I'm not really a fan of the professor. The requirements for the class have been very unclear and she assigns homework which she says she will go over and then does not. I have made friends with a couple people in the class and we have basically been teaching ourselves.

3. I'm all moved in back home. It is a little weird moving back home since I have not lived here full time in five years. A lot has changed in my neighborhood and I am still trying to get used to it. Also, I am not used to living at home. My dad and I get along fine, but sometimes I wonder if I have any more options. I know nursing school is going to be really expensive, so I do think it is a good idea for me to be saving that money I would be spending on rent.

My health has been up and down as well. It is becoming more and more apparent to me that the congenital abnormalities in my legs are causing problems. I am looking into having surgery to correct them but it is scary. Recovery will be long and hard and I can't think of a good time to have it. However, I think it may need to be done now so that it is not even harder when I am older. I plan on seeing an orthopedist as soon as I can. The health insurance that I am getting through my new job does not require referrals, so hopefully I can get in as soon as possible.

Those are my updates for now. Hopefully you will get another soon :)

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!

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.

Is This What ENERGY Feels Like?

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

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

Cautiously Optimistic

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

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

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

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

Another Week Begins...

I don't like Sunday nights, because I'm generally stressed about the upcoming week. And I am normally trying to hurry up and get my homework done. Luckily, I did not have that much to do this weekend. I had to read a book, but I really like it so it is not so burdensome.

I went to the gym yesterday for the first time since the summer. It felt good, but I've been really sore. I also went to a party last night and I am sore from that. I had one of my friends drive me home early because I could feel things going downhill.

Speaking of the gym, I will write a post soon about the struggles that I have had with my weight and where I stand now.

I'm going to watch some more of Disturbia and then finish my book and do some other readings. I hope everyone's week goes smoothly!

Tomorrow

So the surgery is tomorrow. I am quite nervous. And that's really it. Wish me luck! I will update as soon as I am able.

Go Away, Snow

I guess I should not be surprised. I do live in New England. But this snow has been a little ridiculous. I am tired of it. I didn't even expect it the last two times. The first I was out with my little cousin. I had run a couple errands with him and we were headed to the movies and lunch when it began. I turned the radio to the news station that said we were only expecting a coating to an inch. So I continued to the movie theater. Well, it was a winter wonderland when we got out of the movie (Alvin and the Chipmunks...longest hour and a half ever). And then because my little cousin has me wrapped around his little finger, we even went to a restaurant for lunch after. I do not think I have mentioned before how much I hate driving in the snow. Or even when snow is just simply on the ground. I detest it. It makes parking harder and I am always worried about patches of ice. It is just much better for me to sit at home.

It also snowed all this weekend. It just stopped last night. I woke up Saturday to snow everywhere. It is supposed to snow this weekend also. I am supposed to move my stuff into the apartment at school this weekend so that I do not have a lot of moving to do after the surgery. My dad still says we will do it, but I guess he will be driving because, as I said, I do not move in the snow.

Thoughts for the New Year

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

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

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

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

Happy new year, and see you in 2010.

Phew!

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

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

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

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

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

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

Not In Control

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

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

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

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

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

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

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

Happy Halloween!

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

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

Hopefully I snap out of this soon.

Ho Hum

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

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

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

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

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

The Obligatory H1N1 Post

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



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



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

Insomnia

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

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

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

Just Relax

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

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

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

"Disability"

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

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

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

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

Can anyone else relate to not wanting a label?

Just About Done

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

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

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

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

Back At It...Almost

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

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

Also there is just packing and all that.

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