Tuesday, July 13, 2010

What's that you say?!

Well, I should be doing the work that I promised to have done by 5pm today. Instead i've been flipping and flopping around, scheduled some doctor's appointments, responded to emails, talked about doing work, thought about doing work, actually did SOME work this afternoon, showered, did a load of laundry, attempted to stay positive, checked my bank account, avoided the mirror, left the house with head held high to buy first iced coffee in a week and a half. I think that took a lot of courage on my part actually.

I gained 30 lbs in 15 days with no change in diet what so ever. Let me tell you, quite a fucking experience. On June 21st I weighed 165.5lbs. On July 6th I weighed 188lbs. On July 7th I weighed 195lbs and that's where it's stayed. A steady 195 lbs. I know it's "fluid", I know it's because my kidneys are malfunctioning. I know it's edema. But I can't help feeling this incredible sense of guilt, like I want to be wearing a sign explaining to people "look, I'm not lazy and I don't sit around eating bon bons all day long - I eat organic sustainable really healthy food. I do yoga! I meditate! I've been taking my medicine! I've been going to doctors appointments. I eat almost no sodium. I already had edema, although it was getting better. I'm not smoking! This isn't my fault!" Ah, so fucking sick the places my brain goes. It's just so uncomfortable and sucks and i've turned into a frumpy person I don't recognize overnight and my clothes don't fit. Bitch bitch bitch.

I was hospitalized all last week. I've started cytoxan ( IV C H E M O - Duh duh duh) to treat the underlying kidney function decline. It's a six month course of treatment once a month. Actually the side effects have really not been bad so far. First couple of days were a bit rough but completely manageable. I'm not going to list my fears about the side effects because I don't want to give them power. Silly superstitions but whatever. I have AMAZING people in my life and feel ridiculously grateful. It's insane how loved I am. It's SO hard for me to talk about my health and not just put on a brave face. It's SO hard for me to be real about it and to ask for help when I need it. My friends and family do not judge me. They are constantly just there, constantly reminding me that my fears are completely unfounded, constantly reminding me that i'm loved and accepted for exactly who and what I am - all of the baggage and all of the good, all of the everything. It helps when i'm having trouble accepting myself.

My first treatment was last Thursday in the hospital. They pumped me full of iv prednisone, 500 mg for a couple of days. I'm now taking 60 mg of prednisone daily and i'm trying to just trust in the process. I'm in the middle of a pretty severe flair. This is all for a greater good. This is to get this into remission and preserve my kidney function so that I can live with less instability. This is to avoid dialysis. This is so that I can not feel sick when I don't even know i'm feeling sick because I've gotten so used to feeling sick that it's just become status quo and I just make allowances. This is so that I can live. It's pretty simple and cut and dry.

As hippy or whatever as it sounds i'm really trying very hard to find and remember my internal grounding because my external body just isn't doing it at the moment and my brain feels fuzzy and strange and not at all like my normal brain. Ah, the existential dilemma! Such a strange thing this life is. Just because I'm rambling, I questioned everything that the doctors and nurses were doing, I thought they all hated me, we discussed the state of western medicine and health care, I cried a lot and was really the worst I've ever been in terms of not being "nice" in a medical situation but at the end of my stay they all came around and gave me hugs and private and personal notes and I don't know, it was really touching. I still hate hospitals though. Blah.

Thursday, August 6, 2009

I have been a terrible patient....

Over the past year I have been a terrible patient. The last time I saw my nephrologist over 9 months ago he told me that my chances of needing a kidney transplant within the next two years had decreased to 1 in 3. When I began treatment with him, it was 1 in 10. I admit....I freaked out. I missed two appointments with him and I've basically pretended that none of this was happening. I stopped taking cellcept - mostly because it was making me throw up every morning, but also because it reminded me that i am sick....a fact that I have tried to deny off and on since I was 16. I do NOT want to be a sick person! But as I write this my left hand is so swollen and sore that I can barely use it. My body is swollen and unhealthy. And more than anything, this pulsing thought that I can not ignore courses through my psyche in quiet moments....my kidneys will fail and I will die if I don't see the doctor and take this toxic medicine and treat my body as I'm supposed to - not how my peers act but how someone with chronic kidney failure needs to act.

I HATE this. I hate doctors, I hate hospitals - I hate the word kidney. And I am alone. I am not alone in the sense that I have so many people that love me and would take this on for me if they could, but ultimately this is my battle and no one can possibly understand what this is like. I am 28 fucking years old. I don't think at this age I'm supposed to be worried about strokes and heart attacks and kidney failure. I don't think I should know what a grand mal seizure feels like or know the horrors of cerebral spinal fluid leaking down my spine. I don't think I should have to worry about what dialysis would do to my body, my arm, my life. Yes....I am feeling very sorry for myself at the present moment. It's been a rough couple of months - and lupus has just been the tip of the iceberg....the constant and almost comforting source of anxiety among a myriad of unexpected and painful occurrences. Over the past five months so many terrible things have happened, too many too discuss even here in this anonymous forum. I buried my health issues deep inside. I didn't acknowledge it. And with that first denial many others followed. Once you start pretending it is easy to keep going.

I know I can't deny any more. The pretending is over. I made five different doctors appointments yesterday and it was scary but felt good. It felt as if I was taking control back. I wanted to write my first blog entry in a long time because I am just as shocked as anyone that I have avoided my treatment and my doctors for this long. I am intelligent, rational, and understand the implications of not taking my medications and going to the doctor. I have ALWAYS thought that THOSE people that didn't go to the doctor for fear of what the diagnosis or prognosis would be were incredibly stupid....the only thing you are protecting is your own ignorance, nothing else changes. But here I sit, 9 months later, and I AM one of those people. But I won't be anymore. I don't want to live in the dark anymore. I'm gathering strength and support and I'm going to tackle this head on. Anyway, that's all I've got. I hope all out there are well and are doing their best in their own battles.

Good night.

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.