This blog post might take a different turn than you're expecting. I'm not spewing with "happiness" that these famous women have, or possibly have lupus. I am saddened to know that these women might be dealing with something devastating while they are still so young; that they are going to always fight lupus and fatigue and pain in some aspect while trying to carry out the busy lives they lead. I've seen so many people saying that they are happy that these women have lupus, that they will be great advocates for us.
Here is what I've had to say:
Selena hasn't even confirmed herself yet that she has it and everyone's already "I'm kind of glad she has it because she's such a big celebrity". Like what? Some people in the lupus community forget that health is no one else's business. They wouldn't tell someone in one of our support groups that they should come out about it. People post all the time that they're keeping their disease from their family and friends, and that's fine, but when a celeb has health problems suddenly we have every right to know all aspects of them. I'm sort of upset because of the Selena thing in general. If she does in fact have lupus, it should have come from her not "a source close to Selena". If she does have it someone pretty much sold her out. The article I read said she's been hiding it for years so obviously she wasn't wanting to share it with anyone. And if that's the case now she's going to have everyone bothering her to be our superstar which isn't fair. We all chose to be advocates, but not everyone with lupus wants to be and that's fine. I don't think people should be living in complete secrecy with it but they don't need to be someone talking about it all the time
I have had lupus for almost 5 years (diagnosed, undiagnosed most of my life). And I feel nothing but sad when I hear about other people getting it in the prime of their lives, interrupting their work schedules and bringing down their well being. I expect nothing from them. Its not their job to be a voice for me. I'm happy that Nick Cannon and Toni Braxton are open and educate about it. Nick did a whole series on youtube and has done MANY interviews talking about his lupus and he works with the LFA. Same with Toni.
Kristen Johnston is being open about it, and people have ATTACKED her verbally online for not being the lupus superstar they want when she is still getting better and just found out she has lupus. She didn't even need to share that. Neither does Selena. I CHOOSE to advocate for my disease. It makes me feel helpful and empowered against it. I do not think its for everyone. Being open about health concerns is not their responsibility as entertainers. They have enough stress that could trigger flares, we of anyone should understand that and not put anymore on them. If Selena has lupus she is obviously taking a break for a reason, and people need to not cause her more stress and let her deal with HER HEALTH all by herself.
Its not their job to be advocates. They didn't choose to have lupus. They are actors and singers and that's what they chose to do with their lives. They didn't say "wow this debilitating disease sucks, I'm going to talk about it and advocate for it so that all my possible future employers totally want to hire me". We often have that fear just with normal every day jobs, and you think these people who are expected to be active, on their feet, and healthy want to admit what's going on with them. Its their lives, they aren't our sick gift from god to help US. Its a little selfish to expect all of them too.
If Kristen Johnston, Selena Gomez, Anna Gunn, Nick Cannon, Toni Braxton, or any other lupus patient in the limelight is reading this I wish you nothing but better health. If you make the decision to be a lupus advocate I commend you for it and thank you. If not I wish you nothing but luck in whatever else you are pursuing.
I haven't posted in awhile and I thought I would today. Its coming up on the middle of my fall semester right now. So far I have actually been doing pretty well compared to how I have felt by this time in past years. This time of year is not nice to me though, so I'm cautiously enjoying feeling ok for the moment.
Over the past few months I took on the challenge of switching to new adult doctors at a new hospital. Until the end of the summer I was seeing all my specialists at Children's Hospital. I have had many tests done because of this switch, some of which were not optimal but most weren't too bad. I see my new rheumatologist for the second time in 2 weeks. We discussed adding in Benlysta at my last appointment. Despite feeling not-to-bad right now I still think this is a good idea. With the meds I'm on I still flare up too often for my liking, and when I do I miss too much school and then get stressed and its a never ending cycle. I'm hoping that the Benlysta will be able to help me from having as many flare ups, and maybe even be able to come off of some of my meds, most importantly the steroids. I found out that I already have low bone denisty, so I don't feel that I should continue with them if possible. I will stay on them if I need to, but I would really like to be able to take them out of my daily regiment.
Since I posted here last I switched my major from Biology, to Anthropology with a minor in Biology. The classes were becoming too challenging to keep up with while I was sick, much less get caught up in. I have hope that maybe I will be able to go back and finish that degree and end up still doing something with Biology in the future, but for right now this is my best option. We have to roll with what we've been given.
I keep meaning to post here more often, even if its only a short post. I'm going to make an effort to do that from now on. I hope you all are doing well now that schools been in session for about a month now.
I can't wait for the beginning of lupus awareness month to kick off! I am beginning to plan my festivities! One of them is going to be the Walk to End Lupus Now here where I live on May 11. On May 10 (world lupus day!) I'm going to try to get out there and do something awesome as well!
Then we have PutOnPurple day on
May 17. So many exciting things
going on getting the word out
there about lupus! What are
your plans for awareness month
this year? One of the things I'm
doing is dying part of my hair
purple! I will give you all a
picture once I do it.
I have seen a lot of people recently asking questions about Cellcept and thought I would do my best to give a personal account of what its been like for me.
I started taking Cellcept 2 years ago during a very bad flare. I had tried taking it once before that, and had decided I didn't want to take it anymore and it was stopped. I got very sick while off of it, and within a year was on it again. At the time I was also on a very high dose of oral Medrol (steroid like Prednisone) and had just had a 3 day infusion of Methylprednisolone. I was very swollen, sick, couldn't walk, ect. I started on 250mg pills of the Cellcept, one in the morning and one at night.
When I first began taking Cellcept the first time this was the plan I followed:
then take 2 tablets in am and one tablet in pm for one week;
then take two tablets twice a day for one week;
then take 3 tablets in am and 2 tablets in pm for one week;
then take 3 tablets twice a day for one week;
then take 4 tablets in am and 3 tablets in pm for one week;
then 4 tablets twice a day
When I started taking Cellcept the second time this is the plan that I followed:
then two tablets twice a day.
The most troublesome side effects I had while taking Cellcept were the stomach issues, which are very common. My stomach hurt, I felt very nauseous, and I had a lot of diarrhea when I first started taking it. This was especially fun because I was also on 32mg of Medrol and was really hungry! After being able to go down on the Medrol dose, and starting to adjust to the Cellcept things started getting back to "normal" (whatever that word means for us lol).
I want to stress to anyone reading this that its very important to understand all the risks that there are if you become pregnant while on this medication, both to you and the baby. It is important to be on some form of birth control while taking Cellcept, but is also noted that Cellcept can decrease the effectiveness of some birth control. It is suggested to use several forms of birth control on Cellcept, and for up to 6 weeks after you stop taking it.
Here is the website for Cellcept if you have not already visted their website. If you have any bothersome symptoms you should always call and talk to your doctor.
If you have any other information about Cellcept that you would like to add please leave a comment below.
I have not been feeling the best lately. A new semester always brings about new challenges that one must overcome, especially when they are ill. I'm taking a full course load this semester, and wish I wasn't. To be able to get all of my financial aid I have to take a full course load, otherwise I would take fewer classes and choose to be in school a little longer, but with better health and better grades. I'm taking more challenging classes this semester, and they will continue to get more challenging as each new semester comes. I've put myself in a bit of a flare as the first week of tests has come. The stress of exams always makes me so sick, something I'm sure anyone reading this can understand. I had to stay home a few times this semester already, something I hate doing unless I really need to. I am a biology major and have labs twice a week that I go to. This week I missed a lab, and now have to try to squeeze it into another day to be able to complete the assignment that goes with it. The reason for me missing classes all day was that my joints have hurt so badly I haven't been able to get up and move without being in pain. The joint pain started over my weekend, and now it is joined by muscle weakness, and I am hoping for the best in that it will clear up on its own after my tests have past. I have had problems with myositis, which is not just muscle weakness due to fatigue but from the muscles actually becoming attacked and inflammed. Just typing this blog post I have had to let my arms rest on my lap several times because keeping them up on the table is too much. I could barely lift my arms to wash my hair this morning. This typically happens with a flare up, but I am hoping that it will pass because I honestly don't have the mental strength right now to deal with a full blown flare, not just my every day aches and pains. As bad as all of this may sound I really am enjoying my classes this semester. I am taking an immunology class which is fantastic. Being able to get a better grasp on how the immune system is supposed to work, and how it can malfunction, has given me a greater understanding of these diseases that we all deal with. I hope if you come across this post you find yourself in better health right now and are as pain free as possible. Keep fighting, and love life despite lupus. ♥
I’m angry. I am so mad all the time, at everyone over everything. I put on this happy act to keep up the appearance that I am trying to be optimistic and took on the positive side of things. Usually, I feel like that is me. Even with
the complaints and the ranting, I equally spread a lot of positivity and happiness. I don’t feel like this has been me in awhile. Lately I’m so mad. Mad that I have to deal with this, mad that it always creeps back into my life when I feel like I’ve kicked it in the butt. I feel really good, and suddenly I’m back to doctor appointments all the time or going to give blood or urine, or
worse yet stool. I want to be this person within the lupus community that others can come to for helpful advice and answers, but I feel like lately I have not been that person. My anger at this disease, and my own body, has taken over a lot of my actions. I’m talking about food, I blow up about something else. I’m talking a friend, and suddenly can’t stand them and say things I don’t mean. Everything makes me feel like I’m going to pop. I feel like no amount of sleep has been enough, I am always tired. I stuff my face whenever my body will let me (which isn’t often) because suddenly the past few months I can never eat right. I’m either not hungry at all, or get full almost right after I start eating. Its so frustrating. I is a very frustrating feeling knowing that I have a hold over this disease right now if you look at the tests, the numbers. However, if you look at me and I seem to embody that (I look great, not to toot my own horn) but I feel mentally like crap. I feel like I’m not sure anymore that I can be all the things I want to be, and do all the things I want to do. I’m mad that my mind can’t stay as healthy and upbeat as my body is indicating to everyone I am. I blow up at everyone, then just delete and erase every bit of everything I
don’t like. I have been ignoring the real causes for months, and right now I am in this disgusting depressed state that I can not shake. How do you lead and help others, when you can’t help yourself? I have almost completely deleted all my lupus networks in the past few weeks, because I feel like I don’t belong there. I am not a helpful person right now, but hurtful. I have had a hard time convincing myself to go to school, see the few friends I have. I feel like I have nothing going for me right now.
For the past few weeks I have been trying, seemingly unsuccessfully, to get rid of this super bacteria that is ravaging my insides. The first antibiotic they gave me, Flagly, is not killing this stuff. There is only one other antibiotic that even works for C.Diff and my insurance won't cover it. I have been notably miserable since all of this started and I'm really hoping that it will all
Well being on Cellcept and Medrol this past winter I seemed to pick up more bugs than usual and was on antibiotics a few times. So I was more susceptible to picking up germs so was on more antibiotics than usual. Well because of this I now have something called C. Diff which is terribly unpleasant and giving my stomach issues for months and I just kept putting it off because the stomach issues would come and go. The antibiotics killed off the good bacteria in my stomach and so this bad stuff, C. Diff, basically took over in a sense. Being that I had a weakended immune system apparently made it easier for this too happen to. So my advice even if like 3 months after taking an antibiotic and your on immune suppressing stuff get checked for this. I have lost 6lbs since March because I haven't been eating right because I get full so quick and then half the time have terrible diarrhea.
I was thrilled to get to lower my steroid dose but I think between over doing it yesterday and just going down in general has made me feel not-so-good today. I am very tired and sore, as well as hot and crabby. I have had a headache all day and nothing is really helping. I'm hoping that after a few days this will subside and I will be feeling better, because if not I might have to go up to my previous dose. I'm keeping my hope that it will work out ok!
I got into an arguement earlier which made my tachycardia worse on top of everything else that I was already dealing with. And my boyfriend is trying to move out of this apartment and into a new one tomorrow which is stressing me out to the max! Stress + Lupus = Terrible, horrible, no good, very bad days.
I went to my rheum appointment yesterday and it went much better than usual. Me and my rheum don't really get along very well so it was nice that we did yesterday. She said since I have more or less been feeling a lot better lately that we didn't need to do blood work (yay! I hate blood work lol) and that I didn't need to be seen again for another 2 months!!! WOOO lol I also get to go down to just 4mg of Medrol which is exciting. I have been on the steroids for over a year now and started at 32mg, so I'm very close to being off of it. I would be thrilled if I could completely come off of them by the end of summer if possible. I had to stop tapering for awhile back in the fall because of a flare up so that kind of pushed back my plans of being off sooner. While I love that they made me feel much better for awhile, being on them for too long isn't good so I'm glad that my body is starting to be well enough that I can continue to come off of them.
Tomorrow is the end of Lupus Awareness Month and I wish I could have done more. I kept people up to date with lupus facts and sent them to websites for information but I just don't feel like its enough. I went to my local Walk for Lupus Now event a few weeks ago and that was awesome :) My team raised more money this year than last so that was a big success for us. I just want to start planning now, while I have free time before my classes start back up, to plan some bigger events for my community to help raise awareness. God know we all need it! If you have any suggestions leave them in a comment. :)
I was diagnosed with lupus four years ago when I was 16. It has been a rough few years but while I have lupus it doesn't have me!