Monday, October 6, 2008


So, I've been kind of riding a crazy wave of lows and highs recently. Totally unrelated to Lupus, but kind of related to it, I've just been having a hell of a time adjusting to my new life with all of the accompanying changes I discussed in my last post. It's really, really hard. I have moments where I feel like I can see all of this possibility and I have hope - hope that I'm going to go into remission, hope that I am going to really find myself and figure out a better way to balance my life and emotions, hope that I will meet someone else that I love and feel as connected to as I did and still do with my ex. But then I catch a simple cold and it turns into pneumonia within a week's time. (I've been dealing with my sixth or seventh episode of pneumonia for the past couple of weeks. When I went to see my GP, she wanted to hospitalize me immediately, and basically said things which made me face the reality that I do have a very serious illness - something that I think I try to ignore a lot of the time - it was upsetting and depressing.)

Or I come home from work and I am alone. Or I go on dates with someone and then think - how am I ever going to discuss all of the things that I carry with me - kidney disease, severe sun sensitivity, discoid scalp lesions, the crazy body changes that accompany both nephritis and the countless and seemingly endless medications I'm on, the flares when I can't get out of bed and every movement of my joints causes searing pain that makes me cry out. I'm afraid this burden is too much for anyone but me to bear - and really it's too much for me - I just don't have any choice in the matter.

Sometimes I feel like I'm too tired to keep on fighting, like i've passed the saturation point and I just don't have any more fight left in me. I don't want to work, I want to be taking care of myself full time. But without work I have no health insurance - that's not the only reason why I work and I actually really love my job, but it sure would be nice to take a couple of months off and just do yoga all day and have the time to cook incredibly healthy meals, and take walks in the woods, and just regroup and recenter.

But then the highs come in and I feel blessed to be in this world at this time in history - I feel energized to do something meaningful and positive with my life. I feel that I as an American, but also as a world citizen, am uniquely privileged to be able to be experiencing what I can only call a precipice where we can either go further down, following systems that no longer work or we can move towards something new, something stronger, something more conscious. At least I guess I feel that within myself and I see that feeling reflected in the world around me. There's an energy in the air - an energy of change and I don't think it's coming just from all of the political slogans.

Anyway, I guess I wanted to share these thoughts with you all. I think all of us with Lupus know that it is a constant battle to try and find some balance and semblance of normalcy. The spoon theory explains this well. I know I will keep fighting and keep moving forward. But sometimes I'm just so tired. Sorry if this post is depressing.

Friday, August 22, 2008


So, I haven't posted anything in awhile. My life has been pretty crazy and i've experienced A LOT of change in the past few months. As anyone with Lupus knows, stress is not good for us and for me, change = stress. My relationshiop with the boyfriend that i've mentioned in previous postings ended after six and a half years together. We had also been living together so the break-up entailed a new apartment for me as well. The song, "Breaking Up is Hard to Do" could not be more accurate. I feel somewhat like the world I knew has been forever altered.

I also started a new job at about the same time we were breaking up - more stress for sure, but I really, really love my job - something I have not felt in awhile. I now walk to work each morning and just not having to deal with a morning commute has truly brightened my life and taken away some work-related stress.

Just to add a little bit more stress, I decided to adopt a puppy to help fill the void left by my ex-boyfriend. I've also ALWAYS wanted a dog. She's AMAZING but is a lot of work. I feel like a new mother, constantly without sleep and making sure she doesn't eat nails or chew on electrical cords - but maybe new mothers don't have to deal with the electrical cord thing :)

In health related news - I had a pretty shitty visit with my nephrologist on Monday. None of the eleven toxic medications I'm currently taking each day seem to be effective in halting my nephritis. My protein loss levels are the same as the day I started taking everything. I'm currently taking two high blood pressure medications, 30 mg of prednisone, 2000 mg of Cellcept, a diuretic, and then all of the usual Lupus meds like plaquenil, etc. My nephrologist seemed really discouraged on our last visit - I know because he told me not to be discouraged.

He's tapering down to 10 mg of prednisone and starting me on something called Prograf - another anti-rejection immunosuppresant. I'm taking it in conjunction with the Cellcept and everything else. The side-effects don't sound so great, but I'd be really like to hear about someone else's experience with Prograf. He said that if that doesn't work, our next step is to try Rituxan - again, side-effects sound HORRIBLE. Does anyone have any experience with that?

When I began seeing the nephrologist, he said my chances of having complete kidney failure were one in ten. On my last visit, he said my chances are now down to one in three. I'm really scared and I don't want to take all of this toxic medication, especially if I'm just going to continue to decline in health. I don't know. Has anyone out there had a similar experience with lupus nephritis? I know I can't know the future, but it would be nice to have something to go on in terms of what to expect.

That's all for now.

Sunday, April 27, 2008

I have a new job!

So, the job that I mentioned in my last post is going to be my new job! I start in almost two weeks and I'm so excited! My commute is going to be one block long - literally. I'm just sitting here reflecting on how much less stressful the whole morning process is going to be. I can wake up, maybe do some yoga or meditation, shower, make breakfast and coffee and then just walk a block to work. I won't need to worry about bus or train schedules, catching a taxi, driving in traffic, parking, etc. Just that small change is going to make such a huge impact on the level of stress in my life. I can walk home and prepare a healthy lunch. There are no Starbucks or chain restaurants in sight.

Of course, many people would probably tell me that this is a crazy time to make any big life changes given the uncertainty of my current medical status. I just feel like I can't just wait around for "what if". And the situation I was in was extremely toxic and, I feel, has negatively impacted my health. In fact, when my resignation was announced my boss began privately telling people that I was leaving to have a kidney transplant and that I "didn't have long to live" - both statements obviously untrue- just to cover the fact that I was actually leaving because she was a horrible boss. Not to mention the blatant breach of confidentiality regarding my medical history. And the fact that those are pretty sensitive and hurtful things to be putting into the universe. Ahhh yes, the list of reasons why my new job is a wonderful development just keep growing. Love it.

In other news, the cellcept, prednisone, and blood pressure medications aren't working yet so my nephrologist is slowly increasing the cellcept and has put me on another blood pressure medication. I have to say that taking all of these pills in one day can be really annoying. I'm trying to develop some kind of system for taking them and storing them. I just really don't want to buy one of those plastic day-of-the-week pill containers - it seems like admitting defeat, or little old ladyish, or something - but I may have to as they seem useful. So far, no really bad side effects (knock on wood). I do still feel very puffy and it doesn't really seem like any of the symptoms like foamy urine and edema have decreased. We shall see, hopefully the increase in cellcept will do it's thing and the kidney damage will stop progressing. More later.

Monday, March 24, 2008

So far, so good

Well, it's been awhile since I've posted anything. This month has all kind of been a blur, I really can't believe it's the end of March.

Since last we spoke, I've been trying to really adjust to the kidney diagnosis and resulting new medications and diet/lifestyle restrictions. Honestly, so far it's been feeling really great to bring some sense of control back into my life. I've begun seeing a naturopathic doctor who is really great and advising me about various food choices and herbal supplements which can help alleviate and treat many conditions, and especially auto-immune illnesses. Currently, I'm trying my best to completely avoid wheat, salt, and dairy products in addition to beef, pork, additives, pesticides, chemicals, etc. I'm also taking 2 tbs of borage oil per day, and a food-based auto-immune supplement. To work off all of the excess energy I have from the prednisone I've been working on all of these productive projects and exercising (still not as much as I like, but fuck it - at least my body is moving again).

It's the strangest feeling, even though I'm not out of the woods yet at all and I have no idea whether the therapy I'm on is working and the future still seems very unfocused - I feel better. I'm starting to awaken from the frozen ground of uncertainty. I don't think I got the job I applied for, but I know there are others out there. I have options. I am not stuck in place, I can make changes and I can take actions and I can live my present day to it's fullest. It's kind of a cool realization. Not that I'm always this philosophical.

The downside of this type of thinking is that all of the really annoying but necessary components of daily life seem unbelievably irritating and not worth the energy. For someone with a full-time job, bills, etc. this is not a very productive attitude - but it is amazingly refreshing. Basically, I'm still kind of in this wait-and-see cycle, but I don't feel like my life is on hold anymore. I'm moving forward. I'm not sure what forward looks like or how I will feel when I get there or what direction it could take, but I do know that I will continue moving forward. And so far, so good.

Monday, February 25, 2008

Diagnosis Day

Well today was the day that I've been waiting for - Diagnosis Day. It's kind of anticlimactic to be honest.

I have Lupus Nephritis mixed class III/V. I'm still not exactly clear on what that means, especially with this mixed class thing - if anyone out there understands this more than me please share. To start with, I'll be on an increased prednisone dose of 40 mg per day for about a month. In addition, I'm continuing to take high blood pressure medication and a diuretic. My doctor is also starting me on Cellcept therapy to see if it works. If not, then I guess he'll try Cytotoxin (or Cytoxin).

I'm not exactly sure how to feel about all this. I guess this diagnosis is not a surprise and certainly not the worst case scenario, but it still feels kind of scary. I know what to expect from higher doses of steriods - nothing good definitely but at least it's somewhat familiar and I can kind of plan for the side effects. I am NOT sure what to expect from the Cellcept therapy. Again, if anyone has any experience with Cellcept please share it with me.

Mostly, I'm trying to plan for the next few months and to try to figure out how this will all work with a job, doctor's appts., medication adjustments, etc. How do people do this? Maybe it won't be as severe a change as I'm fearing. The thing is, I really would like to change my job (desperately in fact) but right now seems like a bad time to do it. Of course, I also have a job interview scheduled for this afternoon, maybe not the best planning strategy.

I just feel a little stuck in situations that are not ideal mainly because of this new diagnosis and it's soooo frustrating. Also, it seems although I've received a diagnosis and initial treatment plan, this is still a wait and see game - not something I do particularly well. I want someone to say "You have X and if you do treatment Y you should expect a Z outcome." Unfortunately, that's not the case here - I have to see if Cellcept works and if I tolerate it, possibly test other medications, and still there is now guarantee that the nephritis will go into remission.

I think my new strategy is to trust in my doctors and just do everything that I can to take care of myself. That's it for now.

Monday, February 11, 2008

Information gathering

I just spoke with my Rheumatologist who is my biggest ally. She has been my Rheumatologist for well over 9 years and totally gets me. I'm pretty lucky.

Anyway, she told me that she had spoken with my Nephrologist and that he shared some of his immediate reactions with her following the biopsy. I'm apparently losing 7,000 mg of protein/day rather than the 4,000 mg I was told I was losing before (remember the highest limit of normal is 100 mg/day). There is also scarring present on my kidneys (both old and new scarring) BUT there is not a lot of inflammation - I don't get it either.

She said that I have the type of kidney disease that is not treatable, but responds to treatment - again, don't get it. And, that it is the kind that will simmer around for a long time and will possibly (or definitely, still not sure) cause kidney failure. She thinks that he is going to start me off on Cellcept and see whether I respond to that. I will find out definitively on the 25th - two weeks away. It seems like a long time to wait.

The real bummer for me right now is that I can't take any NSAIDS (non-steroidal anti-inflammatories) anymore. Instead, I can either increase my prednisone dose (sucks) or take narcotic pain medication like Darvaset (even suckier) to reduce joint pain. I don't know, it seems like there's going to be a lot of balancing and bad options in the future.

However, I've got to say I'm still feeling pretty positive about everything. All I can do is take care of myself to the best of my ability and wait and see. For now, that's okay with me.

Friday, February 8, 2008


So I am home from the hospital after undergoing a kidney biopsy (my left kidney incidentally). I was very freaked out by this procedure before going into the hospital. I don't know, something about a very long needle being shoved into a major organ repeatedly didn't really appeal to my sense of excitement. BUT, I'm here to say that it wasn't really that bad. AND that you don't get any fun pain medications, only Tylenol.

Not to say that the actual shoving in of the needle wasn't painful because it was, but then it's over. They numb most of the area around your kidney, including muscle, tissue, etc. and then they do the biopsy. The numbing process was way more painful than the actual needle biopsy. In my case, they took four tissue samples so hopefully I will not have to do it again. I would say the most annoying part about the whole thing was having to lie pretty much straight on my back for 10 hours following the procedure. And having to spend the night in the hospital. I really hate being woken up to someone sticking a needle in my arm.

Anyway, I'm home now and I feel so optimistic for the future. I feel like I had this whole biopsy thing built up in my head and it really just wasn't that bad. I don't know. I feel good now and I want to stay that way. There are many things I need to change in my life to accomodate this new kidney involvement issue, but I feel really ready for the challenge. Life is too short to spend worrying about what may be down the road - and I don't mean that in a hedonistic way. I just mean that I'm really excited to be on the journey that I am on in life. In my last post I talked about a new path and I had all of these negative associations with it. But I think really, like many people, I'm just not a huge fan of change. I resist it. But in the act of resisting the inevitable, I create all of this tension.

I don't know, basically I'm saying that I'm trying to go with the flow and enjoy each moment. Also, that I'm embracing this new opportunity to learn about myself and care for myself in the best way possible. Does anyone have any suggestions about diet with kidney disease? I know low salt, but what else? I've begun eliminating wheat, dairy, caffeine, sugar, alcohol but am open to other suggestions.

That's it for now. Just kinda hanging out and recupperating. I'm looking forward to being able to excercise and get outside.

Wednesday, January 30, 2008

A New Path

So I saw my new Nephrologist last Friday and unfortunately the news was not too great. I'm scheduled for a kidney biopsy next Tuesday and will have to be admitted to the hospital for at least one night.

Although I'm going to have to wait and see what happens with the results of the biopsy, the doctor said he thought I was in either stage 3 or stage 5 (or class 3 or class 5 - I'm still getting used to these new kidney terms). He used phrases like "disturbing" to describe the progression of the nephrosis (I think that's the word?). He's put me on a water pill to reduce the amount of edema and a blood pressure pill to try and lower that. So now I take 12 different pills each day which isn't a big deal I guess, but I can't help but feel troubled by the amount of toxins I ingest on a daily basis to try to combat this thing. And I feel that's not even close to the amount of drugs I'll be forced to take if this turns out to be what the doctor fears.

I was planning to write a daily blog now that I know people are actually reading it, but I think I will have to make it weekly instead. I've been feeling really depressed and withdrawn since the doctor's appointment. I don't want to be social, I don't want to talk about my kidneys or lupus anymore, I don't want to be brave or stoic or "special" or any of the things people seem to perceive in me. I just want to feel scared and selfish and I want to escape from my life at the moment.

Lupus can be such a lonely, isolating disease. I don't personally know anyone that has this disease (other than those that I've found online). People have never heard of it, or if they have they don't know what it is. Or if they do have some vague idea, most of their information is totally wrong. If I tell someone in my life that I have lupus, it usually ends up being a 10 minute educational lecture about lupus and I leave the conversation feeling like "Okay, well I've spread a little lupus awareness which is good, but this person still has absolutely no idea how I feel or what it means to be a person suffering from lupus." It's just very frustrating.

A new friend of mine runs the Lupus Foundation of America blog ( and he has a great idea that all of us in this online lupus community can join together to raise lupus awareness. I think it's a fantastic idea. What better medium for those with lupus is there than the internet? I am not a computer geek by any means and had never really even thought to look for groups and blogs about lupus on the internet before, but now that I've seen how many of us are out there I think this could be the way to finally stop the question, "Well, what is lupus exactly?"

On another note, I have the strangest feeling like I will almost be disappointed if the results from the biopsy do not show significant kidney disease. Of course, that is not how I really feel. More than anything in this world, I want to be "ok" medically speaking. I want to feel "normal" and I do NOT want to go through the treatment options that currently exist for kidney disease. However, I've built this all up in my head so much, and have been trying to prepare for the worst, so if it doesn't turn out to be that I almost feel like I've let everyone down or overreacted. I know that doesn't make sense but there it is.

I guess that's all I have to say for now. I hope anyone out there that's reading this knows that there are so many people going through the same thing that you are. Lupus sucks. Sometimes I'm at peace with it, sometimes I'm not. I'm not today.

Thursday, January 24, 2008

I can't believe people read my first post!

So, I created this blog after reading as I found her message so inspirational. I really didn't think anyone would read my thoughts and after creating that first entry, I kind of stopped thinking about it.
Well, I was completely surprised and happy and excited when I decided to check it today (while at work - don't tell) and I saw 7 comments all from great people out there dealing with the same issues that I am. I can't tell you how completely inspired I am by all of you! Apparently, I'm going to have to start writing in this blog every night now because I don't want to disappoint my audience :)
This has been a strange week for me as tomorrow I have an appointment with my new Nephrologist to discuss what's going on with my kidneys. I've been waiting for this appointment for a month and a half and now and I feel like I've built it up so much in my head that I'm bound to be let down by the outcome - no matter what that is. I know that most likely a kidney biopsy will have to be scheduled, so tomorrow probably won't be the day where I get the definitive answers and treatment plan that I so desperately need. Not knowing is so much worse for me than knowing because at this stage anything is possible (i.e. kidney failure, dialysis, chemo, etc. - I just don't know).
I feel like I've been holding my breath about everything in my life until I know what's going on with my kidneys. I desperately want to get a new job, but I can't even begin thinking about it until I know what the immediate future holds in terms of my health. Anytime that Lupus rears its ugly head and gets in the way of what I want to do my immediate reaction is that of a petulant teenager - "Lupus, you can't control me! I'm going to do what I want to do!" But in the end, I always follow my doctor's recommendations and live my life to the best of my ability, weaving in and out of this lupus maze. Does anyone else out there ever feel like this?
I read an amazing quote yesterday that really inspired me: "Everyone dies, not everyone truly lives." I'm kind of meditating on that right now and for some reason it helps.
I'm sure I'll have much more to write about tomorrow.

Thursday, January 10, 2008

My first post

I have lupus (SLE). I'm 27 years old and I've had lupus for 11 years. There is much more to me than this, but right now it's the most important thing going on in my life - which probably isn't that healthy.

So I'm not exactly sure why I am starting this right now. I'm getting over having acute bronchitis and I'm tired. I have a dermatologist appointment on Friday to see what's going on with my discoid lupus (lesions present on my scalp which is causing me significant hairloss). Also, I have another appointment with a kidney specialist at the end of this month. I am VERY worried about the degree of kidney disease or failure going on - I think I'm really sick. I saw this look on my doctor's face when she was reading the test results from a 24 hour urine test I had to do (basically you have to pee in a jug for 24 hours straight and then they test your levels - important for me was the amount of protein being lost).

I'm apparently losing 4,000 mg of protein per day and I'm still not sure what that means. It's pretty much all I think about right now. Well, to be more exact, all I think about these days is the life that has been lost for me - that life that I always imagined I would be living when I was a young girl thinking about what being an adult meant. I'm supposed to have lived up to my potential by now - and I guess the most irritating and depressing thing is that I think I would have if not for this disease. But then I realize that "potential" is bullshit and I'm striving to be at peace with myself, this disease, "where" I am in my life. Because in actuality things are pretty great - I have a fantastic (most of the time) boyfriend, a shitty (but not really) job that pays my bills and health insurance, a great apartment, wonderful friends, etc.

Okay, I realize this is just total stream of consciousness writing and nobody but me will be able to tap into it. Basically, I'm trying to cultivate mindfulness right now and I guess I think this might be a good way to get my thoughts and feelings out. Hopefully, maybe some other people will be sharing a similar experience - or at the least, learn what lupus is.

As I say, this is my first blog and my very first post so give me a break. Mostly, right now I'm not necessarily afraid I'm going to die (although the thought does cross my mind and makes me so sad for all I'll miss and for the people who will miss me), but I'm more afraid of the terrible treatment options out there if I have kidney failure, or permanently lose all of my hair.

If anyone out there is actually reading this, I'll try to be more coherent and grammatically correct next time around.

Sleep tight.