Summer Break!

I made it through the first two weeks of training at the new job. It was a lot of work and a lot of hours. I'm looking forward to the paycheck :) Now the kids are on a week long break for Independence Day. I NEEDED this break. The first week of training I just observed the interactions between teachers and students and the second week I took one student by myself. Next week I will have my whole group (3-4 students) along with staff support and the fourth week I am on my own! A little bit nervous. The kids have some very challenging behaviors including extreme aggressiveness. I had to learn how to protect myself from physical attacks while not harming the students. Also, many of the kids are non-verbal, anxiety ridden, have obsessive tendencies and panic attacks/tantrums. I can't wait until I see that I have made a difference in the lives of these kids.

I have an appointment with a new primary care doctor next Friday and made an appointment to see an orthopedic surgeon in early August. I need to schedule appointments with my rheumatologist and endometriosis doctors tomorrow. I'm interested to see what the orthopedic surgeon says. All the Internet based literature I have read just leaves me dreading the visit.

I am still taking Chemistry I and I am actually doing well in it. That's a surprise. However, I should also say that the professor is horrible and has told us blatantly wrong information at times in lab which has kept us there longer because we had to fix HER mistakes. I start Human Growth & Development next month, but I am not worried about the class. Next semester I am taking Chemistry II and Anatomy & Physiology I. I think I will really like A&P.

That's it for now and I hope everyone is enjoying their summer so far!

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.

Endocrinology

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!

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.

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?

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!

Slacking

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

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

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

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

I hope everyone has a good week!

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!

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!

Frustrated

It's been a frustrating and exhausting past few days in regards to my health. I am bleeding and cramping intermittently, and no one seems willing to do anything. I missed two classes (well, really one, but I was so mad by the time the second one came around I sat it out) because I was being shuffled back and forth between doctors at the health center. Ultimately, nothing got done. So I called my doctor at home and nothing is going to be done until I see him on March 15. What got me the most upset yesterday was the doctor treating me like I was making a big deal out of nothing and saying something along the lines of "while this is a nuisance, it is not an emergency". I never made it out to be an emergency. I called and made an appointment. I even several days for the appointment. It is, however, completely abnormal. I should not be bleeding at all, especially for such long periods of time.

I was really mad yesterday and my hair is still falling out from the Imuran. My fingers have begun to swell and my joints were very, very painful today. I see my rheumatologist on March 11 and she said we would discuss my options then. Hopefully something can be done because I am really sick of this.

First Day at My New Job

I worked for the first time at my new job today. I got into the swing of things pretty quickly, so that was nice. The only thing is that I spent 8 hours, pretty much straight, on my feet. They hurt a lot now. I'm laying in bed and have very little intention of leaving it right now.

I have two oral tests tomorrow, one is Spanish and one in psychology. My partner for Spanish and I are working out our script via email. I am so happy she agreed to this as I really don't think I could get out to the library or any other place tonight. It hurts to even sit in my chair.

I am concerned about feeling this was as this is something I have to go every week. Next week I will be trained to work the cash register so hopefully I can work on that during my shifts so I can sit down.

I get my blood test results soon and I also see the doctor on Tuesday for this continued bleeding. Hopefully I can sort everything out.

It Was Nice While It Lasted...

Started bleeding again last night and today it's pretty intense. I called the doctor, but the doctor I saw for this last time doesn't have any available appoinments until March 23 (!!) so I am seeing another doctor. The next available open appointment in on Tuesday, but that makes me a little nervous too. I have to go get my blood tests done so I might see if I can stop in and talk with my rheumatologist. Since I started the lower dose of Imuran, I don't know if it is connected and they did tell me to call with any problems.

It was a nice break. This is really annoying as it should not be happening at all. And I could definitely go without the cramps. But I am on hold at the rheumie's office.

It is snowing again today but no snow day. The weather has been pretty ugly the last few days. We had the snowstorm on Wednesday, we had an intense rain and wind storm yesterday and snow again today. I am looking forward to better weather as I am tired of the current weather.

I also had two tests today and I am really tired. I set up my payroll at the new job this morning, so everything is all set for that. I just need to show up bright and early Sunday morning.

I hope everything goes smoothly with that and I do not get too tired or too achy from being on my feet all day. The doctor is calling me back in a few minutes, so hopefully I will have some answers as to what is going on there.

Sore Throats Are Not Fun

Went to the walk-in clinic today because I have had a sore throat for a few days. I got my blood tests back and my neutrophil count was the lowest it has ever been, so I scared myself into going. Everything looks fine with my throat but they did let me know I should be careful about a flu going around campus.

I am so happy it is the weekend. Everything has stressed me out this week: work, school, health, money. I'm almost considering quitting my job because it is unnescessarily stressful. But I need the money and it does relate to what I want to do. Also, I don't want to consider myself a "quitter". I can do the job. It's just one of the girls I work with is horrible, disrespectful, condescending and way too uptight. She makes working there miserable.

My migraines and joint pain have been pretty terrible lately also. Part of the reason is probably because I have had to run all over campus this week for work. I need to talk to them about that because I can't keep doing that. On Wedensday my back and knees and ankles hurt so badly I couldn't get out of bed after work. Just putting my feet on the floor hurt. I considered staying home on Thursday because they still hurt really bad.

My dad is visiting my aunt and uncle a couple towns over so I will go over there to visit tomorrow morning. I can't wait to see my dad, even though I saw him last on Monday. I am such a daddy's girl :)

Slowly but Surely?

This bleeding thing I hope is beginning to resolve. I think it may have slowed down tonight, but I'm not entirely sure. I will take another double dose of Aygestin tonight. Unfortunately, I have been dealing with a headache since last night and I have been running a fever over 100 today.

In better news, I have made really nice dinners for myself the past couple days. I made chicken fajitas last night and lemon caper chicken tonight. DEE-licious. Tomorrow I will make oatmeal chicken, which is really just a way of making mock fried chicken. I'm really loving this cooking thing.

I really hope I stop bleeding soon. I'm not sure why it is happening, but I really don't want to go through another ultrasound, more tests, etc. I'm sick and tired of doctors. I want to be LEFT ALONE. Every two weeks I am poked, prodded and stuck with needles. I am so tired of it. I hate having to take time out of my life to schedule in a doctors appointment or a lab visit. My rheumatologist mentioned having me see a kidney specialist due to the radiology report I got when I was having my gall bladder removed. Ugh. NO MORE DOCTORS.

I'm heading to bed soon. This headache won't quit and I am supposed to go to the gym in the morning.

The Verdict is Not In

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

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

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

Black Hole

I kind of feel like thats what going on right now. My mail, for some reason, is not reaching me. It is so bizarre. I have my Netflix movies, my blood test results, and most importantly, money my aunt sent me to pay for study abroad applications. All of them have not arrived.

I went to the office last week and they said they would look into. I also called mail services on campus and they have no idea. I went ans spoke to the apartment managers today and they said they would look into. So far I have not heard back. I really need my mail.

I also have been INCREDIBLY achy the past few days. I went to the gym Saturday, so I thought that was the reason, but I think it might be the lupus causing me pain right now. I also have been having some bleeding problems. I made an appointment with my primary care doctor, but I can't see him until Feb. 11. Hopefully I will have stopped bleeding by then. I'm not supposed to at all, so I'm really confused. It has been going on for just over a week now, or there abouts, and I don't have an explanation. It is not heavy, but it is not letting up. My gums are also bleeding a lot. I called my rheumatologist about my blood tests results and she said everything that has come in so far has been alright.

I guess Tylenol and ibuprofen will be my good friends until I can figure out what is going on in that department.

Also, that post on weight will be coming soon. I just am short on time. 24 hours is not long enough, especially when you have to sleep!

So Happy Its Almost the Weekend

The first full week of school is almost done...and I already missed a class. It wasn't my fault, though, I promise! I had my rheumatologist appointment today and they are the slowest office I have ever come upon. My appointment was at 9:15, about 20 minutes away from campus. My class was at 11:15 and I thought I would have enough time to go get my tests and stuff done. Apparently not.

The appointment went fine. The doctor said my strength in my arms and especially my legs is not where it should be so she showed me some exercises to do. She also scolded me for not getting my biweekly blood tests done since early November. Oh well, I hate being stuck all the time and I am really tired of doctors. So I had a bunch of blood tests done. She said if she cannot find any reason for my daily fevers then she will start a full scale infection work up. I don't think I have one, I really just think it is the lupus.

Tomorrow begins the weekend! I think I am going to relax with friends a lot. Just the way I like it.

Apartment Lovin'

i am loving living in this apartment. I can cook when I want, watch TV if I wake up in the middle of the night...do really whatever I please. I love it. I cooked "taco pie" tonight. Forgot the salsa, but thats OK. I plan out my meals so that I do not spend too much money on groceries. This week is the taco pie, chicken scallopini and ravioli if I run out of meals.

I thought I may be getting a cold earlier, but I do not think so anymore. I also have an appointment with my rheumatologist on Thursday for a regular check up. I just have to remember to call in the referral.

I'm healing pretty well from surgery. I can see the stitches popping out of my abdomen. Its disconcerting to see thread popping out of there.

Finally Caved

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

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

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

No Energy

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

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

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

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

P.S. RIP Adam Frey