lupus boo and a tumor, too!

it's been a long time...

2011-09-22T16:18:00.001-04:00

just a quick update, it's been a while...

had brain tumor removed just over a year ago...after the surgery, actually felt great, which was quite surprising because the docs all said that removing the tumor wouldn't really affect anything...but looking back, I think the feeling better part was mostly from the high doses of steroids I was on...kindof a bummer that I wasn't miraculously cured

I'm a little fuzzy re: what happened over the last year, but the good news is is that I'm feeling pretty good these days! :) I started taking methotrexate (7.5 mg once a week) a few months ago, and it seems to be helping (finally! something is helping!) I'm also on prednisone (10mg) and lopressor (beta blocker) and various supplements and vitamins. It's nice to finally have a combo that makes me feel pretty good...still have fatigue in the afternoon and some fuzzy brain action, but so much better than before...no skin involvement and no joint pain (knock on wood).

I did attempt to get a job about 6 months ago at the local library, but that was a bust. I was doing interlibrary loan work, and it was just too much (wrapping and unwrapping books, packing and unpacking crates of books...). So that only lasted a few weeks, hopefully I'll get back into a library job next year, maybe volunteer in the meantime.

I did have a bout or two in the hospital this year, which was a bummer. Had pneumonia once (finally got the vaccine, hope it works...), and had cellulitis about a month later (did *not* want to go into the hospital for that, but they thought it was necessary :/ ). Anyway, fine now, though dealing with a pulled wisdom tooth, ugh!

hopefully, I'll start updating this blog more often, though I've been fairly blue lately, so don't want to write a bummer blog...send me cheery messages! :)

surgery is done...and I'm home!

2010-08-06T12:42:00.001-04:00

Just a quick post to update...

I came home on Wednesday, just 48 hours after the surgery! Totally crazy, went in the hospital Monday AM and was home by Wed early afternoon. Had to get repeat MRIs done Mon. AM since the ones they did the previous Thursday didn't work, but the Mon. ones came out OK.

Surgery went well, the tumor (or whatever it was, we'll find out more next Tuesday), was the size of a ping pong ball, slightly bigger than expected. But they were able to remove it and I'm walking around like a champ. Taking it easy for the rest of the week, and then go to the doc on Tuesday to have the staples removed and discuss results with Dr. J.

Not too much else to report except I was already out of bed walking on Tuesday! Very exciting :) Photos to follow soon :)

--k

surgery-eve

2010-08-01T19:44:00.003-04:00

It's been a pretty crazy past few days. The pre-op meeting was...well, it was long. We really had no idea what to expect, but I did not expect a full day medical marathon of tests - blood tests, MRIs, a physical etc. It was a loooong day and we *still* didn't learn more details about stuff. Well, we did learn that we should be there at 8am on Monday for a 10am surgery, but that has been contradicted and turned on it's head all over the place since then.

No time to write now, gotta shower and go to sleep to rest up for the Big Day!

We're heading in to arrive at 7:30 and the day will go from there. I will be supported by lots of family members and everyone is praying for me.

Wish me luck, I'll update as soon as possible :)

tomorrow - pre-op meeting

2010-07-28T21:24:00.002-04:00

Tomorrow is the pre-operation meeting with the doctor...holy cow! Ummm, starting to feel a bit real here! I was not in a good place last night, I was in a lot of lupus pain, and wondering why I had to deal with so much pain, a trip to the oncologist today to deal with some swollen lymph node issues, AND having brain surgery next week. I mean, c'mon, shouldn't there be limits to how much someone has to deal with??

Feeling somewhat better today. Tylenol helped the pain and the oncologist still doesn't think the lymph nodes warrant worry.

Things are pretty much under control, though it's going to be a busy weekend tying up lots of loose ends. A last minute complication has me going to the cardiologist on Friday so he can give me a clean bill of health for the surgery.

Hopefully we'll learn a lot tomorrow and the details will fall into place. It has been frustrating now knowing very much at all about the surgery -- we won't even know what time the surgery is scheduled for until Friday evening.

life in a holding pattern

2010-07-23T11:54:00.002-04:00

so, I'm pleased to say that I actually feel ready to look for a job! sure, I'm thinking part time, low pay, I can't really do anything challenging right now, but still, it would be nice to get out of the house regularly and bring in a little money.

then, in steps the Brain Surgery...oh for goodness sakes, now that I finally feel a *little* better, I can't apply for any jobs or make any plans because I have to have Brain Surgery?? Can you imagine applying for a job...you could have a little asterisk at the top referring to this note:

*Kristin will be available sometime around the end of August, beginning of September. She's hoping her hair will have grown back by that time and also that she will be thinking and speaking clearly. She just has to go through a little Brain Surgery, but then she should be fine. Really!

Hmmm, perhaps that's not the best way to sell one's self...jeesh, life's complicated!

make a wish? ha ha ha!!

2010-07-21T21:07:00.003-04:00

so, today is my 38th birthday. wowee! with so much else going on, I really didn't care if we did much to celebrate this year...

around 7 o'clock my doorbell rang. I had been waiting for a delivery (soft hats for after the surgery!) so I was *sure* it was the UPS guy, yay! I yanked the door open, and was a bit gobsmacked that instead of my friendly delivery man, it was my sis (down from NYC) and my mom and step-dad bearing a delicious chocolate cake - complete with candles! after a rousing rendition of "Happy Birthday," I'm about to blow out the candles when someone calls out "Make a wish!" ----
....
silence
....
and everyone just bursts out laughing! snort!

Where would I even START to make a wish at this point!?!?

Anyway, kinda funny.

lupus...tumor...lupus...tumor...

2010-07-15T20:03:00.002-04:00

...sometimes it's hard to figure out which one to worry about.

Since I have surgery scheduled in 2-1/2 weeks (gulp!), I suppose the tumor will have to take precedence. Or I could just ignore both things and spend all day surfing the web or staring mindlessly at Facebook...

But not when there is an almost-4-year-old running around the house! No rest for the chronically-ill-who-also-happen-to-have-a-brain-tumor!

This afternoon we decided to make a trip to the mall (a fairly rare occurrence due to our dearth of moola). The trip was a bust due to small child experiencing terror when presented with the Automatically Flushing Potty! So, quick stop into the Lego Store and home we went. Sigh.

But at least I am well enough to be attempting such an ambitious trip. This weekend we will be attending my husband's work picnic. Thinking back the past two years, last year I was too ill to attend, and the year before I hopped from shady spot to shady spot because being in the sun made me sick (love ya lupus!).

So that's pretty much what's going on. Working hard at scheduling enough help for after the surgery, and dealing with the complication of the surgery being in NYC (about an hour's drive from home). We have lots of family, friends and neighbors who are happy to help out, thank goodness, so at least that's one less thing to worry about.

Off to put the boy to bed. G'night.

an update

2010-07-08T12:35:00.003-04:00

first off, another article (kinda funny:
Yes, it really is brain surgery from Time magazine.

So, since I am unable to find any doctor to tell me the spot on my brain is going to magically disappear all by itself, I have decided to go ahead with Brain Surgery. Really, don't you think about it with the capital letters?

Anyway, I went to see Dr. Jeffery Bruce at the Department of Neurological Surgery at Columbia University. This is one of the top neurosurgery departments in the country, and Dr. Bruce is the co-director of the Brain Tumor Center, so I think I've hit the jackpot. Also, they accept my health insurance!

Dr. Bruce basically reiterated what my first opinion said, and although he said we could wait 6 months to do another MRI if we wanted, he also used the word "inevitable" in reference to the surgery. My rheumatologist also recommend I go ahead with the surgery, so I decided to do it. Did you know you can just pick up the phone and schedule Brain Surgery? Huh!

So, it's scheduled for August 2nd. Wow.

Am I freaking out about this? Well, yes and no. Most days are good days, and I'm staying strong. Then there are bad days when I cry. Not a big surprise! But I'm more crying over the giant wrench this whole thing has thrown into my life rather than the fear of the surgery itself. I'm sure that will kick in the night before the surgery.

We're working on setting up a schedule for people to come and help out, and slowly trying to explain things to my 4 year old son. He's still dwelling on my episode from last November where I keeled over and ended up in the hospital for 8 days with a 104 degree fever and pneumonia, so I want to prepare him the best I can for this. Right now we're going with "Mommy has a boo boo in her head and the doctors are going to fix it" but I've got some books requested from the library that I hope will help elaborate a bit.

So this is life with lupus and a brain tumor. The lupus is pretty calm right now, thank goodness, though fatigue is kicking my butt when I overdo it. We're trying to figure out how to manage my lupus meds + the surgery. Doesn't seem like a great idea to go into surgery while being pumped up on immunosuppressant drugs.

That's it for now.

2 interesting applicable articles

2010-06-17T13:50:00.003-04:00

I just stumbled across this article on Slate

Head Case: Trying to decide whether to have brain surgery
http://www.slate.com/id/2227764

It pretty much sums up what I'm going through.

___________________________

another interesting article:

As doctors find cancers earlier, more patients get overtreated
http://tinyurl.com/earelycancerdetection

ah, 6 months ago, how I miss ye...

2010-06-16T14:56:00.002-04:00

yes, my last blog post was in simpler times when I could just be happy about a fancy new hair cut...oh how things have changed.

Last November I had an "incident" in which I woke up one morning, ran up the stairs to the bathroom and then...keeled over. I had a high fever and who knows what, and ended up in the hospital for 8 days with pneumonia.

During my time in the hospital, the nice doctors and nurses decided to put the time to good use and do 100 billion tests on my bad self. I swear, I'm pretty sure I had 8 CAT scans in one day.

So with words such as "cancer", "MS" and of course the lovely lupus being bandied about, I was having a ball! Still not sure what the whole passing out on the floor was about, but probably the 104 fever didn't help.

Fast forward to the present. It has been rough times since the hospital stay...my head is fuzzy most of the time, I have blurry vision in my right eye, pain comes and goes. I am on some nasty drugs (Cytoxan, a chemo drug), which make me feel better but destroys my immune system and makes it hard to eat.

One of the fancy things they noticed during hospital testing mania was an unidentified spot on my brain. I did go see a (crazy) neurologist back then, but he pretty much blew it off as a side effect of the lupus and thought it was vasculitis, so we decided to wait and see.

Then I went to see a neurosurgeon. He said he didn't think it was a tumor, he thought it could be MS and I should see a specialist to rule it out. So off the the MS center at St. Barnabas. After more tests (an MRI and and MRI spectroscopy), MS neurologist said it (most likely) wasn't MS and that is was a tumor and I should see a neurosurgeon (see where I'm going with this? yep, that's a complete circle baby!).

Anyway, that brings us to this morning. Somehow I was able to get an appt. with head of neurosurgery at St. Barnabas the day after I called (on his day off). These circumstances made me a bit nervous, but I was grateful he could see me so quickly.

Mom accompanied me to the appt (thanks mom!) and we learned the good news and the bad.

The bad: It's most likely a tumor. There were indications on the MRI and the MRI spectroscopy that both point to tumor = yes. Not conclusive but pretty likely.

The good: At this point it's small and it hasn't grown since last Nov. Also, it is located in the front left lobe and it has been determined by very smart people that this part of the brain doesn't do anything (huh?).

The other bad: Recommendation -- Brain Surgery.

The doctor says that the spot should be biopsied and while they're in there, they might as well just cut the whole darn thing out. I am still wondering what happened to the good old days of "wait and see", but there are risks associated with that (the tumor could grow and spread into places that it actually would cause problems, or could grow large enough that chemo and/or radiation would be necessary if they did surgery later - the tumor is small enough now that chemo/radiation would most likely not be necessary).

Of course having lupus will make any surgery that much more complicated, still not sure the details on that one.

So, lupus, I'm sorry but you're going to have to take the back burner for a while. Yes, I know that you have been totally a pain in my ass (sometimes literally) for the past 3 years, but unfortunately I have other things to think about for the time being.

I guess that's all I can say at this point. I keep trying to figure out a reasonable status to post of Facebook, but just can't come up with something that works, so will skip it for now...hi I'm kristin and I have a brain tumor seems a bit harsh...

I'm sure this hasn't sunk it yet, I keep looking around for Candid Camera to pop out of the closet. But what the heck, if I panic it's not going to help anything.

I'm glad I found a decent doctor and that he's fairly close by. He was very clear with his thoughts and he answered all of our questions.

Alright, that's enough babbling for today. I'll keep you posted...

my new hair

2009-12-17T11:57:00.001-05:00

hey, look at me! I have a cool new haircut :)

less drugs, more pain, still feeling better

2009-09-24T10:55:00.001-04:00

I've stopped taking Savella and Imuran. The good news is that my fatigue/dragginess/wonky feeling is gone! I can get stuff done again, I am so relieved!

The bad news is that the pain is considerably worse. Getting up in the morning is a beast, ow. I am still taking the prednisone and advil, so once those kick in I feel ok, but then again in the evening the pain comes back.

I feel OK about this trade-off though. I can work through the pain, and there are meds I can take to help with the pain. The fatigue felt unfixable and it was miserable not being able to get off the couch for the past few months. Now I even have enough energy to cook dinner :)

One interesting thing is now that the other drugs are out of my system and the side effects of those drugs are gone, now the side effects of the prednisone are coming back. So I'm hungry hungry and talking a mile a minute again.

Other than what's mentioned above, the main other annoying symptom I have is ITCHING. Two kinds - one is just a general itchiness on my back and stomach - annoying. And the other feels like there is a bug crawling on my arm...really, I SWEAR there is a bug on my arm!!! -- but there's not. Ummm, ANNOYING!!

ta for now.

just an update

2009-09-17T14:51:00.002-04:00

so, I hope nobody is holding their breath for blog updates...sometimes I'm in the mood to post, sometimes, I'm just not...

anyway, it's been a long summer, and I'm glad fall is finally here...the hot weather just makes things oh so much more complicated, and not being able to go out in the sun also really stinks in the summertime (love hearing about everybody's fun trips to the beach :(

so, I got quite sick last June, but started taking Imuran which helped clear up my awful skin rash and helped with some other symptoms as well. I had to cut the dosage in half because it was screwing up my liver and making me quite nauseus (and acid reflux), but it seemed to do what we needed in terms of the rash and the half dose cut down on a lot of the side effects.

About a month and a half ago, I started taking Savella, a fibromyalgia drug, to try and help with my aches and pains. Unfortunately, it really didn't help much with the pain, but it did make me feel dizzy/wonky and get chills and just makes me feel kinda blah in general.

I went back to the doctor yesterday, and I'm so pleased that he had me stop taking both the Imuran and the Savella. I was going to ask to stop with the Savella, because the side effects were very annoying and it wasn't helping, so I'm glad he suggested it. And he felt that the Imuran has done its thing, we're going to keep an eye on the rash and I'm crossing my fingers that it doesn't come back.

So that's the update for today. I'm still on a little bit of prednisone (7.5mg) and taking 4-6 advil a day for the pain, but things seem pretty much under control.

I'd rather be taking fewer medications and feel a little bit of pain than taking a bunch of meds that just aren't helping and giving me rotten side effects!

up...and down...and up...and down

2009-07-24T12:50:00.003-04:00

man, I'm pretty sure my last post said I was feeling better...well, I was until late in that same day. Then I started feeling yukky again, and have felt yukky all week. Soooo annoying.

Maybe I caught a cold from my son?
Maybe I danced around the house too much?
Maybe I ate something unhealthy or that I'm allergic to?
Maybe I ...
Maybe I ...
Maybe I ...

This is what drives me crazy about this illness. It changes so much, and I can rarely figure out what is causing me to get sicker. I do know that being out in the light and increased stress both really screw me up, but other than that, it's hard to say.

So today I am feeling so so. Very achy through most of my body, but at least that's helped by the drugs, as opposed to low energy which just sucks.

Wish me luck that I feel better tomorrow, we're off to the hot air balloon festival!

feeling better

2009-07-22T10:08:00.001-04:00

Man, this illness turns on a dime! I felt really crappy yesterday, and it really sucked. Today, I'm barely sore and feel much better.

Of course, Simon is coughing and sneezing today, so I kept him home from playschool (don't want to spread the germs!).

Anyway, it's so strange that this illness changes so quickly. I'm glad I'm moving back into the "feel better" direction since I had been slowly feeling sicker and sicker day by day for the past week or so. But I have no idea why I feel better!! Could it have been the simple fact that it was a rainy day yesterday, so I didn't get any UV exposure?? Oy, who knows.

not feeling so great

2009-07-21T14:29:00.003-04:00

so, it's my birthday, and I'm just not feeling that great. I'm still dealing with the stress of my sweet baby going to playschool...he has another crying fit today as I left :(

I've started classifying how I feel into two different categories: energy and pain. When I was so sick last month, it was a combination of both...intense pain and draining lack of energy. I was having trouble even getting out of bed, much less wrangling my 3 year old child all day.

After "the big sickness" last month, I started feeling better. My skin showed a tremendous improvement, and my energy got a lot better, I could actually get off the couch.

But now the pain is coming back. Gradually, day by day, I just get a little more sore. First I had an achy upper torso, then my elbows hurt, lower back, and now much of my body just hurts.

I really hope that the medication (Imuran) starts kicking in in ways other than healing the skin. I'm still on prednisone as well, although I'd really rather get off of that medication.

Anyway, just a general update, a little whining. I'm having difficulty at this point figuring out at what point it's OK to just hang out on the couch all day and when I'm well enough to actually do stuff. Today, I'm good just lounging around (plus, it's my b-day, I deserve it! :)

My mother and I are working on a sickness scale to track how I feel, so that should be helpful when we get it finished.

the bitter post (plus some not-so-bitter)

2009-07-14T13:21:00.004-04:00

I hate it that I have to drop my crying child off at daycare in the morning
I hate being in pain
I hate losing my hair
I want to go to the beach
I want my skin to go back to normal
I'm tired of being tired
I miss my life that wasn't filled with doctor's appointments and medications
I wish I had enough energy to get off the couch and do stuff
Summer is tormenting me now that I am a vampire
My house is a huge mess because I don't have enough space for all of our cr*p

********
on the other hand...

I love my son, husband and the rest of my family, who have been so supportive
I don't live on the streets
I have Hershey's Kisses in my freezer
There's a nice breeze blowing in my window
I finally found a doctor that I trust

lupus sucks.

today...

2009-07-13T20:27:00.002-04:00

my elbows hurt. Why is lupus such a weird disease?? Sometimes my scalp hurts, then my shoulders, ouch, my neck, oh look, ow, my thighs hurt...and today, it's my elbows. This disease is so strange and inconsistent.

Other lovely stuff that's going on includes the fact that I'm losing my hair. My hair has thinned considerably over the past year and a half, but I think this may be serious this time. I'm taking Imuran, which is a chemo drug, so I'm not surprised my hair is falling out, but, ummm, it sucks.

I went to my (new) general practitioner doctor last week because my chest had a mild aching feeling all week, and I was worried it was pericarditis (inflamation of the sack around the heart). The doc did some tests, and it looks like everything is ok...now I'm guessing it is just an acid reflux/heartburn kind of thing. Ever since I was so sick a few weeks ago and then started taking the Imuran, my tummy and insides have been feeling all wacky, so this isn't a big surprise.

One question that has been floating around my head lately - could the Plaquenil have actually been causing my terrible rash (it certainly wasn't helping...). I went off the Plaquenil the same day I started taking the Imuran, and the rash went away very quickly. Everything I have read about the Imuran says it takes at least 4-6 weeks to kick in, so if it had an effect on my rash, it would have been unusually fast to start working. Anyway, something to ponder.

I have a doctor's appointment on Wednesday, I will be discussing test results with Dr. B.

it's been a while...

2009-06-30T19:57:00.002-04:00

and some major changes have taken place since I last posted in April.

Back when we last touched base, things were going pretty well. I was feeling OK, and my rash was improving. I was feeling hopeful, because I had decided not to start taking CellCept and was pleased that my symptoms were getting better anyway. I was going to yoga a couple times a week, having weekly acupuncture, and had closed my business as a way of reducing stress, and it seemed that these alternative solutions were really helping.

Until...

I took a weeklong trip to Florida to visit my dad and step-mom, followed by a weekend trip to a beach house with friends. I'm not sure if it was the stress of travel, or too much time outside in the sunlight, but the week after I got home from the beach, I became very sick. Severe aches and pains head to toe, low grade fever, fatigue, and the rash got a lot worse - face, neck, torso etc.

Now, those of you who have read this blog will know that I have seen multiple doctors of various types over the past 2 years. I was starting to feel a little silly changing doctors so often, and was not planning to change again. I was happy enough with Dr. C, a rheumatologist in Philly (2 hours away...) who also does acupuncture, but we ran into a problem...I got sick and couldn't get in touch with my doctor. I called the office 3 times over the course of a week as I started feeling sicker, and didn't get a call back. This really started to freak me out. I think they did call me back once, but didn't leave a message, so I'm not sure it was them (restricted number).

Anyway, the point is, I was off to find another doctor. A few months ago, I spoke with someone who said she thought there was a holistic rheumatologist in Long Branch, which happens to be 15 minutes away from my house. I sortof blew this recommendation off at the time because 1. I already was seeing a doctor I was happy with, 2. she didn't give me the doctor's name, and 3. I was a little skeptical that there could be a holistic rheumatologist in the town next to me when I'd been driving all over hither and yon trying to find a doctor I liked.

So, imagine my surprise when I did a little googling and found Dr. Arthur Brawer, holistic rheumatologist in Long Branch. I called him, and was able to set up an appointment for the following day (loved it, he answered his own phone...).

I went to see Dr. B, and was so happy with him. He really is a holistic rheumatologist...I was shocked.

Unfortunately, now that my year and half long quest to find "the one" [doctor], my sickness had progressed to the point where taking the drugs I had feared was now unavoidable. There have been so many instances of irony involved with my lupus so far, and this is just another one. I'd finally found a holistic doctor who is often willing to treat lupus without stronger drugs, but for me, he's recommending I take Imuran (an immunosuppressant drug).

And at this point, I decided to listen to his advice.

Why now? Why listen to this doctor when I'd ignored experts in the field and other rheumys before?

Because I trust this doctor and his philosophy of healing. I know that if he thought we could avoid this medication, we would, but at this point my health had deteriorated to the point that things were in crisis mode.

If you've read this far, I applaud you, narration is almost over, I promise...

I began taking a low dose (50mg) of Imuran 3 weeks ago. I returned to the doctor 2 weeks after my initial appointment, and he was thrilled with the progress, even though Imuran generally takes 4-6 weeks to kick in. My skin was greatly improved; it had gotten so bad that Dr. B was concerned the skin wasn't performing its important functions of temperature regulation and preventing dehydration. He said it was so bad that some doctors would have recommended hospitalization, so the improvement was a relief to us both.

I'm feeling physically better as well, though I am still pretty achy and fatigued. I don't really leave the house much as I'm trying to avoid the sun as much as possible and it is also pretty exhausting, even just going to dinner or running and errand or two.

So that's my giant update...more to follow sometime soon on the emotional effects this is having on me and my family, trying to raise my an almost 3-year-old son without being able to take a walk or play outside...

new doctor and panic (drugs are scary!)

2009-04-20T19:26:00.003-04:00

I've been gradually feeling better of the last month or so which is a great relief. The rash on my skin continues to improve slowly, though I wish it would just go away. It is not itchy or painful, but it is unsightly.

I went to see a new dermatologist, Dr. W, a couple weeks ago, and the visit threw me into a bit of a panic. My mother came with me, and she was a bit shocked, she hadn't realized the extent of my rash. The doctor was thorough and is one of the top doctors in the study of skin lupus. Unfortunately, her recommendation for treatment really threw me for a loop. As I had been feeling better, and things were moving in a "getting better" direction, I was surprised when Dr. W recommended I start taking CellCept, an immunosuppressant drug. I was really taken aback, this is a step that I had been dreading, and it really feels like crossing a line that won't be easy to get back over.

She recommended this drug in order to try and get me into remission. She also talked about the possibility of future kidney damage, which really scared mom (and rightly so, the possibility of kidney involvement is not something I take lightly), although I wasn't as concerned because earlier in the week, my rheumy said my tests were nothing to worry about. I plan to address this discrepancy with Dr. W when we get a chance to speak on the phone.

I was upset by this appointment. I am not ready to start immunosuppressant drugs. It just completely goes against my natural health philosophy. It just doesn't make sense to me to suppress the very thing that is supposed to be keeping me healthy, even though the immune system is all out of whack and turning on itself...

It was a very rough weekend...every time I thought about going on the CellCept, I got upset all over again. And I knew my mom was very concerned, so that was a bit of an added complication as well. Mom and I spoke a few times over that weekend, and by Sunday I was feeling better. I had decided that I would give my way a fighting chance for 6 months before going on the stronger drugs. Mom was in agreement that this was an OK path to take, as long as Dr. W was on board. I'm still playing phone tag with Dr. W. The questions I need to address include how strongly she feels that I should go on the CellCept, and what specific indicators she mentioned that indicated the possibility of kidney involvement.

I'm hoping the Dr. W will be OK postponing the CellCept for a few months. I can do tests to make sure the kidneys are not having problems, and if I start feeling worse, I will re-evaluate.

So far, I've been doing fairly well with my lifestyle changes. I recently stopped working (see previous post), so the stress from running our shop is considerably less. I stopped nursing my baby, so that's one less stressor on my body. I joined a gym and have been going to yoga a few times a week. I've been going to acupuncture 2 times a week as well.

My biggest challenge is healthy eating. My willpower is weak (to say the least) when it comes to food. My goal is go have a diet that includes more vegetables and fruits, less sugar and white carbs, and a moderate amount of meat. Unfortunately, I crave sugar and white carbs. I am going to start seeing a holistic nutritionist soon, and am hoping she will be able to help. I found a course at a yoga center called "Healing your relationship with food" - it sounds perfect, but I won't be able to attend this year...but maybe in the future.

These are pretty big changes in my life. I am really working on my mind/body connection, and have put my faith in these alternative solutions. Any positive thoughts pointed in my direction are appreciated!

It's been a tough month...

2009-03-17T16:18:00.002-04:00

but I'm *finally* feeling better and having a good day!

I caught a cold from Simon about a month ago and UGH it was yukky. It affected me by causing every muscle in my body to ache, kinda like the flu :( I would wake up pretty miserable every morning...as the day progressed it would get better, but then it would get bad at night again :( I also had (have) this quite annoying lame cough that is just totally unproductive...someone suggested post-nasal drip today and that sounds about right.

But anyway, I'm glad I'm feeling a little better. The stress of closing our store is starting to wind down (someone made a generous offer to help get rid of the rest of our inventory...), and I have a few other good things going on that are cheering me up.

Phew, that was a rough month (a rough winter all told), I'm glad spring is here!

the good news and the bad news

2009-02-25T12:10:00.002-05:00

I think I'm finally done doctor hopping for the time being, phew! I drove over the Philly yesterday and met with Dr. Lan Chen, who is a rheumatologist who also does acupuncture. She was very nice, good bedside manner, very knowledgeable about lupus, and a good communication style. She also knows the Dr. Werth, who is a medical dermatologist who specializes in lupus and is part of the same healthcare system. So *finally* I am happy with my doc!! Between her, and my great primary care physician and my local acupuncturist, I should be all set.

When I look back over the past year and a half of docs, each doctor was missing a key piece that I've now found in this doc, so I feel OK that it took me a while to get here...it's been quite a learning experience, really.

So, the bad news...I'm feeling pretty poorly. It was pretty hard to get out of bed this morning, my upper body ached all over, from my scalp to my hips, with my shoulders being particularly painful. It's making it very difficult to figure out what to do with my life, working and childcare-wise. I'm also weaning my 2 year old son, so that's stressful, too, oh boy.

appt. appt. appt.

2009-02-03T20:16:00.002-05:00

today was a triple doctor appointment day, phew!

1. the dentist (yikes, it's been a long time!) - called yesterday and they said they could fit me in today - nice that some docs can accommodate so quickly! anyway, the appt. was uneventful, just a preliminary exam, will go back for a cleaning in a few weeks

2. acupuncturist - am glad I found an acupuncturist in the area that I like...left there today and my back pain was gone.

3. general practitioner - I'm very happy to have found a GP that is a good combo of natural and traditional treatments! we agree that the program I have been on from the holistic dermatologist is too much. this doc has a program that has a few supplements, but not a billion like the other program. so...

that means I have to fire my holistic dermatologist. I feel bad about this, but it's just too overwhelming right now - he's too far away, the program he wants me on is too overwhelming, and it's also too darn expensive.

I was able to make an appointment with Doc #2 (see above) after checking with her office and making sure she treats lupus patients. my GP doc took a look at this doc's credentials, and he thinks she looks good. I finally feel like this is moving in the right direction, whew!

I'm weaning off the prednisone, am down to 15 mg. I'm feeling good today...still had some aches and pains yesterday, but today (after acupuncture) I wasn't feeling any pain at all (sweet!).

My skin is getting a bit better, too, though I still have rash on most of my body. My face has cleared up though, so that's a relief.

Compared to 2 weeks ago, I'm doing much better physically and mentally. It's amazing how close you can get to bottom, and the next day things get just a little better...

carrying on

2009-01-30T14:48:00.002-05:00

I've found 3 rheumatologists in the NY/NJ/PA area that do research or practice acupuncture in relation to rheumatological diseases, score! Now, to get an appointment with one of them (therein lies the challenge).

Doctor 1:
Emailed her yesterday asking if she sees patients, or if she does not see patients, could she recommend someone who does. Received an email back from her saying the appt. scheduler person would call me back.

The appt. scheduler person called me today, but she said that the abovementioned doctor just told her to make an appt. with the first available physician. I told her that wasn't going to work, that I was looking for a doctor with a specific treatment philosophy. She told me they all treated the same types of patients, and I just paused for a minute as I wasn't quite sure how to respond to that since it's just not true. I told her I needed more information about the doctor's and she said she'd have the office manager call me back with more information.

Doctor 2:
Called U Penn Health Center and asked for a rheumy who does acupuncture and the appt. person found the doctor I was looking for. I still wanted to make sure that this rheumy treats lupus, so I left a message with her office and hopefully they will call me back.

Doctor 3:
I'll call doctor 3 if doctors 1 & 2 don't work out.

I really want to find a rheumatologist who is going to be open minded about alternative therapies. I am hopeful because the docs above seem to offer what I am looking for, so wish me luck that I can work something out with one of them.

I'm also happy because I found another online discussion board where people are a little less uptight and I've found some more similar-minded people. It's called but you don't look sick?

lupus sucks.

2009-01-29T14:32:00.002-05:00

it's been a rough month and a half.

Lots of pain in the joints, I felt like I had the flu for a week or so in there.

I started an anti-candida diet that is no sugar, no yeast, no fermented stuff...it's a huge pain in the butt, but supposed to help make my gut healthy, which is a foundation for health...so I'm doing my best to stick to it for now.

The circus of doctors that I've seen over the past few years is starting to wear on me. The indecision and inconsistencies I'm running into as I attempt to balance traditional and alternative medical treatments is stressing me out.

I had 2 back-to-back doctor appointments last Monday - one with the natural dermatologist and the other with my new(est) rheumatologist. Somehow my path has ended up with me seeing a rheumatologist in the Bronx...I'm not really sure how that happened, and although I like this rheumy (we'll go with Dr. H for this guy), the inconvenience is just too great. And it's not like he's exactly what I'm looking for, I went to him because Dr. D (natural dermatologist) got a recommendation for him. But this rheumy is not naturally minded, so I'm not sure why the recommendation came about.

The appointments went fine, but I'm starting to run into conflicting opinions between the different doctors and that is a big stress. I really lost it after these appointments, the weight of all of this is really starting to take its toll. After things had a chance to settle in a bit, I felt better, but it is a lot to deal with.

Although I'm starting to feel a bit like a crazy person, hopping from doc to doc, I'm think I'm finally starting to be able to narrow down what I need. And my mom suggested that maybe I won't find the perfect doc, but at least I should find one who I can communicate well with.

So although I can barely believe it myself, I am still looking for one more rheumatologist. One that is familiar with alternative therapies such as acupuncture. I have determined that this is not impossible. There is a rheumatologist at the Hospital for Special Surgery in NYC that also does acupuncture, and there are 2 doctors over in Philadelphia that do research on alternative and complimentary medicine in the rheumatology field.

I feel like I got a bit derailed with the last referral, and well, I'll just have to deal with that. It's tricky going to so many people, but the bottom line is I need to find someone who I can work with. And driving to the Bronx for a doctor I don't love is just silly.

I did go to a local acupuncturist this week, and it was a wonderful appointment. It helped push me in the direction of working just a little bit harder to find a rheumatologist who can understand the benefits of the alternative treatments.

...

So, this blog is good for something, if only me getting my thoughts down for myself! I've emailed one of the docs in PA, so wish me luck that she responds with a referral or an offer to treat me herself.

If anyone out there reads this and is interested in talking about alternative therapies and lupus, please feel free to comment so we can chat some more!

ah, the good old days...

2008-12-09T16:25:00.002-05:00

of my last blog post, where I talk about my skin clearing up and feeling better. Not so anymore :( My skin has really gone off the deep end, my face, neck chest, belly and back are all covered with angry, red, painful rash. Man, it hurts. I can't really find any cream or anything to make it feel better either, though some salves have helped a bit.

I have added another doctor to my list, this one is a Holistic Dermatologist named Dr. Dattner. I had an appointment with him a couple weeks ago, and I'm hopeful that he will help. He is helping me deal with the disease from a nutritional perspective and we're working on decreasing the inflammation using supplements and eventually some dietary changes.

But in the meantime, I'm coming here to whine. It hurts, it really does. And I want to itch it...which makes it hurt more. It feels like bad sunburn all over. Totally sucks.

I'm still on the Prednisone, have gradually tapered down to 8mg (going down a mg a month), and am also still on the Plaquenil. Besides the skin, I feel fine, no aches and pains. My hair is even coming back somewhat, so that's great.

I may have to change the name of this blog though...Dr. W told me at my appointment that I don't technically have Lupus, rather I have Mixed Connective Tissue Disease. This is most likely good news, MCTD has a lower chance of effecting my internal organs, so that's a big relief. It's even more amorphous than Lupus though, so it just makes is seem difficult to fix. She also said I have indicators for Sjogren's, so that can jump on the list, too.

Mentally I'm feeling pretty crappy these days. I've had to accept the fact that I just can't get as much done as I used to. Spoke to sweet hubby and basically told him we're just going to have to deal until I start feeling better. All this on top of work and Christmas right around the corner, arg, lots going on.

feeling somewhat better

2008-09-03T22:00:00.002-04:00

I went to see Dr. W last week, and we agreed it made sense for me to go on some stronger drugs. I have been in some fairly bad pain for over a month, and it's not really getting better. So I am now on a short course of prednisone.

I started with 20 mg (last time I was on it I started on 40 mg and was a crazy person). This time, the side effects aren't as bad, but it didn't make my pain go away completely either. Still some pain in the mornings, but by afternoon, I'm feeling almost no pain (whoo hoo!).

I've been on the pred for 7 days and am now on 10mg. I'm feeling pretty good, though my knuckles and elbows still hurt a bit.

I am happy with working with the new doc and hoping that things will get under control soon. My skin is MUCH better. My face is almost clear, and the rashes on my neck, chest and arms has faded a lot. The newer rash on my legs is not great, but at least my legs are easy to hide under a pair of pants!

I've still got some bald-ish spots on the top of my head, but bit the bullett and got a haircut at the barber's when Simon had his cut (see Simon's blog for details: http://sweetsimonsays.blogspot.com/). He cut it a bit too short, but not too bad.

One lovely thing about being on the prednisone is now I can get stuff done! I have the energy to update my blogs, post photos, get 2 year old paperwork done, huzzah! Also, the crazy hunger it causes isn't that big a deal this time because I'm getting too skinny anyways...ah, lupus, you crazy disease you!

ouch, lupus hurts!

2008-08-23T16:23:00.002-04:00

so, these past few weeks have basically s*cked. I have been in pretty intense pain much of the time, most severe in the morning and the evening.

I've been taking 3 ibuprophen 3 times a day, and it really hasn't been doing much...though I guess it's doing something, because when it's wearing off I can really tell.

The pain has gradually been getting worse and worse, in my fingers, wrists, elbows, shoulders and back...and my ankles are starting to join in the fun as well.

Rolling over in bed at night, especially with my sweet son in the mix, is a big challenge. Lifting 30 lb Simon is getting to be a challenge, I sortof have to lift him with my wrists rather than my hands...

BUT do not despair...hope is on the way in the form of...

acupuncture!

I had lower back pain for years - from the time I was in high school until my 30's. I'd tried chiropracty, physical therapy, exercise...but nothing worked until the acupuncture. And it wasn't a mind over matter thing, either, I really didn't think it was going to work until one day I woke up and it dawned on me that I was pain free - for the first time in YEARS.

So I started up with acupuncture again. I had been getting acupuncture a few months ago, but stopped because it didn't seem to be doing anything and it was a burden financially.

Now that we're in a better place money-wise, and my pain was getting so bad, I decided to give it another try. I figured it was a better path than the "adding more and more drugs" path.

I went to a session on Wed night, and didn't notice much relief, though I may have had a little more energy the next day or so. I went again on Friday morning.

Friday afternoon, I looked at the clock and noticed it was 4pm...and I hadn't taken my afternoon does of ibuprophen yet, hadn't even noticed that I needed it. Recently, I'd started looking at the clock around 1pm or so, waiting for 2pm so I could take my pills. But the pain had diminished so 2pm came and went without me even noticing.

So that's where I stand now. I still have painful joints, but at least it's moving in a feeling better direction rather than the worse-and-worse direction. And the acupuncture worked fairly quickly, so hopefully with additional treatments, it will continue to make me feel better.

I have any appointment with Dr. W (rheumatologist) on Wednesday, we'll see what she thinks.

the current "state of the lupus"

2008-08-08T13:56:00.002-04:00

In my previous post, I shared how I have found a new doctor that I am happy with. Well, that's the good news. The not-so-great news is that I feel like cr*p.

I have two major issues going on. One is related to going off the plaquenil for about a month, and the other is not.

First, the aches and pains. Ummm, ow? I'm up to 3 ibuprofen 3 times a day now (that's a ton for me). My shoulders, neck and back (and elbows??) hurt a lot in the morning, are so-so all day long and then hurt a lot at night again. It makes lifting my sweet son awfully tough.

The other issue are the two rashes. I have two distinct rashes, one that came back when I stopped taking the plaquenil, and one that has been consistently there for months now.

There is a rash on my legs...it's sporadic dots (look like small bug bites) on my thighs and a bunch on the back of both my calves. It doesn't really bother me too much, doesn't hurt etc.

Then the *other* rash. This has been the bane of my existence for a while now. It finally has calmed down on my face, so now I have just mildly red skin all over my face. But my neck and chest are covered in red dry rash. And it itches and hurts. My arms are also covered from my hands up to my t-shirt line. This is how I finally accepted the fact that the sun was causing this stuff. Every exposed area is covered in nasty red scaly stuff :( Basically, it's like all the skin on my arms died and peeled off and left dry scaly skin behind (gross, I know, sorry, but it's what is going on).

This arms/face/neck rash is really depressing. I also have hair loss, so I wear a bandanna every day. I've tried lotions and creams, anti-itch and moisturizing, natural and not natural, for the rash, but nothing seems to do any good. It's really frustrating, annoying, painful, and a also embarrassing.

My knuckles are a bit swollen, and for a couple weeks, the fatigue in the evening was pretty bad. Not so much fatigue now, I'm not sure if the plaquenil is starting to kick in, or if it's the ibuprofen or what, but I'm glad that's calmed down.

I'm considering calling Dr. W and seeing if she recommends taking anything stronger than the ibuprofen, or if I should try and tough it out until the plaquenil starts working (it takes a few months to kick in, it took around 5 months last time).

So that's pretty much it for now. Basically feeling crappy and crossing my fingers that the drugs will start working soon. The rash really sucks, it's so ugly.

One bit of good news is that Dr. W mentioned that lupus usually sticks to the one manifestation it shows itself in in the beginning, so since mine is skin and aches and pains, it probably wont jump over and start affecting the internal organs. That was a relief to hear, reassuring.

I've started doing the qi gong again, and hope to add acupuncture soon, too. I'm also seeing a counselor to try and help deal with all this junk.

Hoping to feel better soon!

yes, moved on to another doctor...

2008-08-08T13:30:00.002-04:00

so, my most recent posts featured a holistic doctor, Dr. F. After working with him for about a month and a half, I finally decided that it wasn't really working for me.

I did have another appointment with him where we went over my treatment plan. I left his office with over 20 (yes *twenty*) different nutriceuticals & supplements to take, as well as some Chinese herbal tea. He wanted me off the Plaquenil, but didn't give me any guidance about stopping the meds. He also put me on an *extremely* restricted diet - no salt, no sugar etc. - though I believe he recommends this diet for all his patients.

I took the supplements twice a day for a few weeks, but started feeling worse and worse, I'm assuming because I stopped taking the Plaquenil. Back were the aches and pains, back was the early-evening low grade fever. And back came rash #2, primarily on my legs (more on that later, I've determined I have two separate skin issues going on...).

Now, I was not expecting a miracle cure, and I realize that I only gave this treatment plan a very short trial. I didn't give up on this treatment because I thought it wasn't working, but I decided I didn't have enough confidence in Dr. F to continue with him as my primary doctor. I finally decided that I just didn't feel comfortable enough with how we were communicating. I needed a lot more guidance concerning the restricted diet and stopping the plaquenil. Also, he didn't mention anything about staying out of the sunlight (I have finally accepted the fact that I am allergic to the sun...more on this later, also). My mother was extremely concerned about the fact that he didn't mention anything about monitoring the health of my kidneys and internal organs.

So.

I decided to try a new doctor (shocker!).

Although I do feel like I'm doctor hopping a bit, there have been valid reasons to leave the doctors that I have left. And as my mom reminds me, this is the first year of the disease, and we're still feeling our way around this whole thing.

One of the doctors I had been considering seeing before was Dr. Susan Ward of The Consciousness Institute, but it's about an hour south west of Philadelphia, so it's around 2 hours from my house. I originally didn't see her because of the distance, but at this point, the distance didn't seem to matter as much, I really needed to find a doctor whose healing philosophy meshed with my own.

I had a bit of an epiphany and I was able to step back and look at my actions with some perspective. I recalled reading posts in my online mothering forum, and thinking "wow, these mom's really need to add some common sense to their thinking". Well, so did I.

Although I would love the pursue a natural treatment plan, the bottom line is -- I am sick. There is medication available that will help me, even though nobody really knows why. But I am sick and the meds will help, therefore, I should take the meds. It's not like I am taking these pills for no reason, or taking a zillion pills. So I finally faced up to this fact, thereby allowing myself to go back to a rheumatologist, rather than a naturopath or other doctor who was not going to have me on plaquenil.

So, back to Dr. Ward. The first appointment went very well. She is thorough, thoughtful, willing to answer questions...and she is supportive of alternative therapies in addition to the traditional treatment (she recommends meditation and acupuncture, aw well as natural supplements). So far she has been conservative with the meds, which is really what I'm looking for. I was looking for a doctor that would really look at me as the patient, rather than just prescribe meds based on a generic treatment plan (this is a similar experience I had with my son during his first year - please look at my baby, not just a growth chart!!).

So besides the fact that she is two hours away, Dr. W seems to be the doc for me. She did recommend me finding a rheumy that was closer and associated with a University hospital, in case of emergency, and I'm working on that. There's no real hurry because I have seen Dr. Buyon in NYC and she is associated with NYU hospital.

It is a big relief to have found a doctor who I feel is on the same page as me. Now hopefully we will get my health moving in the right direction!

the results are in...

2008-06-17T13:01:00.005-04:00

After having tons of blood taken and submitted various other bodily fluids for testing, the results are in. I went to an appointment last week to meet with Dr. F to go over the test results. Mom accompanied me to the appointment for moral support. Wow, did I leave that appointment with mixed feelings!

I have been able to open my mind to alternative treatments over the past 10 years. I have had success with acupuncture, chinese herbs, meditation and yoga, and have had some negative experiences with traditional Western medicine. My mother doesn't believe in taking a lot of medication either, but her feet are both firmly on the ground (where my head may be up among the clouds a bit...).

Dr. F presented us with a lengthy list of test results, and as he walked through them he jotted down supplements that he felt would work to remedy the problems he came across. We ended up with a pretty big list, and that was just the beginning.

We started discussing my food sensitivities and started off with a bang - "Do you like cherries?" he asked. Mom and I look at each other with wide eyes, as not 5 minutes earlier in the waiting room we had just been raving about how much we loved cherries and sharing our stories of the times we had stopped at side-of-the-road fruit stands and gorged on entire bags of cherries. "Well, yes, I do like cherries" I reply. "Well, you are extremely allergic" was the reply.

*shock*

I was prepared to come to this appointment and hear that I should cut our refined sugar, dairy, fried and processed foods etc. But cherries? Ouch. That's just mean.

Dr. F continued to go through the results, and he found some serious issues in my gut. Words like "fungus" and "parasite" were mentioned. Joy. The good news is that, although the stomach issues were fairly severe, they are an obvious and treatable problem, so fixing them could be a big step in the right direction.

So, that pretty much sums up the appointment - today we were just reviewing the results, we'll discuss the treatment plan at the next appointment. I was pretty shell shocked, and mom and I went out to the car to talk things over.

I was pretty floored by all of this. It really felt like I was diagnosed with a whole bunch of new stuff on top of the lupus and I just wasn't in the mood to hear that I was *more* sick! But after I had a chance to sleep on it, and talk it over with a few folks, I started to wrap my brain around it.

I'm at a fork in the road, and although turning back in 6 months or a year is not out of the question, choosing this alternative path is a fairly weighty decision. I'm the type of person who likes things in black and white, so it's really hard for me to deal with all of this gray.

I need to set up an appointment to go over the treatment plan with Dr. F in the next week or so. I'm hopeful that I'm beginning a path to better health.

have been on the down low...

2008-04-28T21:26:00.003-04:00

I haven't posted in a while because I was waiting to go to my new doctor. Yep, another new one, but this time I'm changing course a bit.

Today I saw Dr. Flowers - an MD who is certified in acupuncture and Chinese herbal medicine. I finally feel like I found a doctor who has the same healing philosophy as me and I am relieved.

Dr. F is quite a character, and a talker :) My appointment today was over 3 hours long - a full health history, lots of discussion of the details of what's going on with me physically and mentally, and a full exam. He is going to do a multitude of tests, including allergy testing for a huge list of foods and chemicals, to see if we can determine what is making my immune system go all wacky.

For the first time in my life I feel like I am going on faith. Faith that this style of medicine, although not a mainstream, traditional approach, is the right path for me. There won't be a magic pill to fix the problem, I'm sure there will be lifestyle changes involved, but it will all be for the better.

I have another appointment in a couple weeks to have blood taken for the main allergy test. After all the results come in, Dr. F will go over the data, and then we will have an appointment to discuss treatment.

Seeking alternative treatment for lupus causes a lot of people to freak out a bit. In my opinion, if I can find a treatment that will not require me to be on medication for the rest of my life, I will be so relieved. If the alternative treatment doesn't work, I will most likely go back on the meds, and the only risk will have been experiencing a few months of additional pain. Being that I've had pain for a good part of my life anyway, this risk is acceptable to me.

Wish me luck on this new leg of my journey to better health! I'll keep you posted...

the eye doctor ...

2008-03-24T18:45:00.002-04:00

Another joy of being a lupus patient is that you have to go to an opthalmologist for regular eye check-ups, because there is a small chance that the plaquenil can mess up your retina.

OK, no biggie, an eye doctor appointment, right? Ummm, yeah biggie! I thought it would be a quick thing, maybe 1/2 hour max, in and out no problem. Well, I was there for two hours!

The field of vision test thingy (the one specifically to test the retina dealio) is a pain.in.the.butt! I had to stick my head in this small white light-box type thing with one eye closed, and for 7+ minutes stare at this little yellow dot...and if I saw any other red dots lighting up, I had to press this Jeopardy-type button...and then I had to do it for the other eye. OK, it might not sound that bad, but it was quite tortuous. This is in addition to the lovely drops the sting into my eyes, the prying open of the eyes etc. etc.

And I have to go through the same mess every 6 months! Wazzap with that? Ugh.

feeling better

2008-03-06T20:52:00.002-05:00

It seems that the plaquenil is actually kicking in. I've been on plaquenil for about 5 months now, and am feeling pretty good. Most of the aches and pains are gone, though my pre-lupus pain in my lower back/hip area seems to have come back...so strange.

I'm still having skin issues - lesions on various parts of the body, rash on face, losing hair (hate that one...) - but at least none of these are painful.

I'm pretty much living life as if I don't have lupus. I am trying to simplify if possible, but I've decided that I might as well live my life how I want to while I can...seize the day and all that... :D

I've lost a bunch of weight. It's hard to tell exactly how much because before the lupus I was pregnant, then had the baby and was nursing...so I lost a lot of weight after the baby was born and it just sortof kept going. It really feels weird to be so skinny - around 110 lbs. I haven't been this small since high school. It's nice to be skinny, but think I'd rather be fatter with no lupus than skinny with lupus...

starting to sink in

2008-02-22T18:49:00.003-05:00

So, I think the fact that I have lupus is finally starting to sink in. I've started developing symptoms that are starting to bother me more...sure, pain all over all day is no big deal, but now I'm LOSING MY HAIR!! :( And I have a couple small rash spots on my jaw and ears (not to mention the lesions on my leg...), and they bug me too.

I've decided to start a symptoms journal so I can keep track of my symptoms all in one place (so I don't need to make separate posts for the various complaints...complaining is starting to get old....).

I sortof find it weird that these new symptoms bother me more than the old stuff. They are less debilitating than the other painful symptoms. But the hair loss really stinks. I've always disliked my fairly thin hair, and now I have even less of it and it really sucks. It's receding at the hairline and there are almost-bald spots, too. Guess it's time to do some hat shopping :/

I've also started thinking that I might want to find a new doctor (yes, again). This is part of the whole "sinking in" part. I'm realizing that I will be working with my doctor for the rest of my life, and although I do like Dr. A, she's kindof my rebound doctor from Dr. Jerk. I was happy with Dr. A because she was very hopeful and nice, and that was what I really needed after the discouraging start with Dr. Jerk, but Dr. A has some drawbacks. Primarily, she isn't really open to working with alternative or complimentary therapies, and that's very important to me. She doesn't tell me I can't, but I'd like to work with someone who is knowledgeable about them.

I found the name of a rheumy in NJ that is a DO (rather than an MD), and I thought that might be a good start. It turns out that she is not currently practicing, but she did recommend a doctor over in PA. Dr. Susan Ward, a rheumatologist, runs The Consciousness Institute, a rheumatology medical practice. The Institute offers an array of alternative solutions, including meditation, massage, nutrition counseling etc. I'm really excited about this place, it sounds like just what I was looking for, though it is far away (about 2 hours). I am planning to contact them and see what they think. I would be willing to travel that far a few times a year if they would work with me that way. Maybe I could check in more often by email, and have my blood tests done locally...I guess I'll see what they say.

symptom and meds journal - 2007/2008

2008-02-22T18:36:00.010-05:00

I've decided to make one post where I can keep a record of my symptoms so I can track if they're are improving or worsening. I plan to try and update monthly

Summary thus far:

October 2007
faint rash on nose, aches and pains
rash spread to whole face, neck, chest, some on legs and arms
aches and pains (muscles and joints) worsened
low grade fever
pain under scalp (so weird!)

started Plaquenil (200mg), didn't notice any major changes

November 2007
did about a month of Prednisone (the miracle drug!)
felt alllll better...
but couldn't sleep, started getting shaky hands, ate like a horse, gained weight etc.
still taking plaquenil

December 2007
tapered off the prednisone
symptoms slowly came back
and achy joint here one day, there the next
sore muscles, mainly in the back, neck, shoulders
classic malar rash on nose and cheeks

January/February 2008
general malaise
sore muscles (shoulders, back)
occasional sore joints (fingers, wrists)
thinning hair, receding hairline & almost-bald spots
lesions on leg (about 1/2 dozen) - biopsy by dermatologist diagnosed ... lupus! (surprise!)
rash in ears and just under ears (on jawline), also on right eyebrow and top of forehead at hairline
still taking 200 mg plaquenil (also calcium w/ D, fish oil, multivitamin, and fenugreek (for nursing))

march 2008
feeling better, think the plaquenil is kicking in (whoo hoo!)
most joint aches and pains are gone
old pain in lower back/hip area is back (??)
still have skin lesions on face, chest, leg, hand...
mild malar rash, rash above eyebrow and at hairline and jawline
down to a size 2/4

still taking 200 mg plaquenil (also calcium w/ D, fish oil, multivitamin, and fenugreek (for nursing))

end of March 2008
had a pretty bad flare with pain throughout body (started in shoulder blades, very odd) - only lasted around 24 hours - also great fatigue for one day
not sure what brought on the flare, had some tummy issues which may have been a stomach bug or from eating too much sugar/white flour

in general - pain is mostly gone, but skin is worse
face still has malar rash, spread to jawline, hairline
spots on hands, legs, chest, belly
hair loss is worse

started chi gong (like tai chi) this morning (march 21)
working on eating less sugar, more whole grains, fruits and veggies

June 2008
haven't posted in a while because things have been pretty stable

haven't had any pain in a few months

my skin is still bad -- it lightened up for a bit, but now have the rash on forehead, jaw, malar rash on cheeks, rash on back of neck, red splotchy on back of hands and creeping up arms -- starting to agree that sun is a problem and have ordered sun protective clothing so I don't have to become a vampire

hair loss is still there - three baldish spots running up my scalp - am wearing a bandanna most days, luckily they look kinda cute :)

have slacked off on tai chi due to major scheduling changes (P got a job and so I don't have free time anymore in the mornings) -- would like to start again soon

have just stopped taking Plaquenil (June 16, 2008)
started seeing new doctor (Dr. Flowers) and will be getting new treatment plan in the next week or two

am still taking Fenugreek, but that's pretty much it

have been eating poorly in anticipation of new treatment plan including nutritional restrictions (ie. fear I'll never be able to eat cheese again!)

June 30, 2008
Started taking nutritional supplements today - the list is too long to write here.

Current health update:
Severe rash on chest, neck (front and back) and arms and hands. Rash feels like mild sunburn and is red and raised with some peeling parts. It's very uncomfortable and sensitive.

Rash on face is not as bad, but face is still mostly covered in red/pink rash.

Took a walk around noon today and was very tired this afternoon. Not sure if it was sun exposure or lack of sleep due to big storm last night.

No aches and pains, still have hair loss.

Working on reducing sugar and salt from my diet. Will start making herbal tea in the next day or two.

July 5, 2008

Still feeling pretty good. I think my joints in my fingers are slightly swollen but are not painful. I do have pain in my lower rear hip (right side), but it feels like the pain I used to have, long before the lupus was even an issue. I'm hoping to be able to add acupuncture in a couple times a month, and hopefully that will help with this pain. I think it is exacerbated by driving long distances, so will try to minimize long drives.

My rash on my arms, neck, hands and face is still bad. My arms and neck are the worst, red, peely and painful. It hurts and is raw like sunburn and it looks quite awful.

Am taking supplements twice a day. Tried the chinese herbal tea yesterday and it tastes disgusting. It will be hard to drink it once a day, much less twice.

Need to be more strict on diet -- cutting out salt and sugar is *extremely* difficult, so cheating is easier, so eating poorly is easier.

so many blogs, so little time...

2008-02-01T20:03:00.000-05:00

Realized I haven't posted in a month, and that is bad blogging etiquette (yay, I finally remembered how to spell "etiquette"!). Not much good news on the lupus side of things. I've been feeling fairly cruddy since going off the prednisone...gradually getting a little worse each day it seems. Mostly muscle pain in my back and neck and arms...it's quite hard carrying my sweet baby who is now over 25 lbs!

It's frustrating really...I am still in a bit of denial I'm sure. I know I should be cutting back, reducing stress, increasing sleep...but these are momentous tasks when you have a 17 month old baby and run your own business. Can't really cut back on being a mommy, and working at the store is enjoyable and stressful at the same time.

The rash on my face is back, though not as bad as before...just the classic malar rash on the nose and cheeks. I have these weird rash/spot things on my leg...I went to the dermatologist and he did a biopsy of them...surprise, they're lupus!

The dermatologist also commented on my thinning hair...I guess it's been so gradual that I didn't really notice, but I guess it is thinner than before...oh joy.

Anyway, not the cheerfullest post, but it's not the cheerfullest time. Have a lupus support meeting tomorrow, hopefully that will be interesting.

off the prednisone...

2008-01-01T21:33:00.000-05:00

So, it's been about a week since I've been completely off the prednisone. The first few days I was a little nervous because the pain started creeping back in...sore knuckles on one hand one day, two knuckles on the other hand the next day...a sore wrist, then two painful thighs...

But now things seem to have balanced out and I'm doing OK. I have some pain in my back, but taking a couple Advil is enough. I'm very relieved, I was pretty worried that the pain would all come back when I stopped the prednisone completely.

So, I'm still feeling pretty draggy, it's still hard to get stuff done. I have a little pink in the nose and cheeks, but most of the rash is gone. I'm not sure if the flare is totally gone, or if the plaquenil is kicking in, but I feel pretty good thank goodness.

I've started having little "chats" with my immune system, telling it that it really doesn't have to work so hard and that maybe it wants to take a vacation? Maybe it's working! :)

I had more tests done last Friday, hopefully the results will come back soon and they will be better than the last round...

I miss buzzy kristin

2007-12-05T19:00:00.001-05:00

otherwise known as "coming down off of prednisone"

I've been gradually reducing my predinsone over the past few weeks. I started on 20 mg a day, and it eventually resulted in causing sleepless nights, shaky hands, and hyperactivity. Wow, and I thought I was talkative before! It got pretty bad, so I called Dr. A and asked to start tapering off. I went down to 15mg, then down to 10 mg the next week. Then down to 5mg, and now I'm alternating 2.5mg one day with 5mg the next.

Although I was reticent to go on steroids to begin with, I have to admit they really helped. My rash on my face/neck/chest etc is almost gone, I'm just left with pink across my nose and cheeks (the classic malar rash). I don't have any pain in my joints and muscles and the fevers are gone, too.

Unfortunately, now that I'm weaning off the drug, my energy level has really dropped. I think I'm feeling mildly depressed as well. Total bummer. When I was on the prednisone I got SOOO much done. I was catching up on stuff that should have been done 6 months ago. Now I'm back to having to really push myself to get stuff done again. We'll have to see how things go, see if there are other ways to get some energy...eating well, lower stress, better sleep and some exercise may be good places to start! I'm off traveling for the next few days, hopefully will be able to relax a bit after that.

the docs and the drugs

2007-11-27T06:41:00.000-05:00

I've been taking the prednisone now for almost 4 weeks now. It is really powerful stuff. I was on 20 mg to start and took that for about 2 weeks. I knocked the lupus right on its butt! Rash went away, aches and pains in muscles and joints are gone, no fevers, feeling pretty good actually. The side effects? I finally asked to lower the dose when my hands were shaking and I was getting less and less sleep (the final straw was the night I got one hour of sleep, but it was my bad for eating chocolate before bedtime, duh!).

So I have been gradually lowering the dose, and still feel well, but am not "buzzy kristin" as I had dubbed myself. I did feel really hyper, which was somewhat disconcerting, but I felt good, and wow, did I get a lot of stuff done! I was catching up on stuff that had needed to be done for the past 6 months, yay!

I'm a little worried about coming off the Prednisone. I was in a pretty bad flare before I went on it, so who knows how I'll feel when I come off the drugs...

Enough about drugs, on to the doc!

I went into New York City yesterday with hubby and baby to see Dr. Jill Buyon. Dr Buyon is the Vice Chair of the Dept. of Rheumatology at the NYU Hospital for Joint Diseases - otherwise known as "a bigwig in the lupus world". I was very pleased with our visit.

We had a 2 hour consultation with Dr. Buyon, and she encouraged my husband and baby to stay the whole time, which I appreciated. She did a full history, a physical exam, looked at my tests and talked with me -- a *very important* step that a lot of doctors seem to forget about these days...

She was mostly in agreement with my current course of treatment, with a few minor tweaks here and there, but nothing major. That was a relief as I plan to continue seeing my local doctor - Dr. A - since Dr. Buyon (Dr. B!) is a little far to travel on a regular basis.

My blood tests show that I have very high anti-DNA levels and my compliments are very low. I think this causes concern that the organs could be affected, though right now they appear fine. Dr. B asked me to do a urine test every other week to check for blood and protein. That sounded like a good idea to me since the possibility of organ involvement is one of my main concerns...

One of the best things I got from my visit yesterday was the green light to continue breastfeeding my little one. I had been going back and forth on this one -- the other two doctors I've seen both recommended that I stop breastfeeding. Dr. Jerk made it seem like I should just stop that day (like I can just stop cold turkey, baby would freak out!). Dr. A was more understanding, but still felt it would be better for me if I quit. I did a lot of research on the safely of the drugs for the baby, and am confident that they are OK for him, so we were really more worried that it was too much for me. But I was not ready to stop nursing and neither is baby, so it was really stressing me out to try and wean him. And stress is definitely not good for me! So, the bottom line was that I was thrilled when Dr. B told me unequivocally that I could continue nursing, yay!

So, all in all, I'm feeling OK these days. I am a little worried about what will happen when I go off the prednisone completely, but we'll cross that bridge when we come to it.

I also just got an email from someone who has lupus and has tried lots of alternative therapies over the past 15 years. She lives locally and we're going to get together and chat, I'm really looking forward to meeting her, she seems like a neat person :)

just an update

2007-11-08T19:19:00.000-05:00

So, I've been on the plaquenil for a month now. I'm also now on Prednisone. It's hard to say what the Plaquenil is doing, but the Prednisone is some powerful stuff.

I've been living a fairly medication-free life for the past few years, so it's hard for me to deal with taking these serious drugs. The Prednisone makes me all buzzy. I'm short with my husband, and it's so hard with my 14 month old son. I keep a "slow...slow" mantra going through my head to try and calm stuff down.

On the plus side, I'm actually pretty much pain free and getting a lot of stuff done. Having this much energy makes me wonder when my energy went away. Was it during the pregnancy? Before then? 10 years ago?? I really don't know, I feel like I haven't been my peppy self in a really long time.

Regarding my previous post when we were playing "fun with self-diagnosis"...my doctor says that the symptoms I have all fall under the lupus umbrella, so no more self-diagnosing for me!

And concerning my doctors...yes, plural. I was seeing a rheumatologist in Red Bank (from this point on, this doc will be known as "dr. jerk"). I saw him just after I got my initial diagnosis from my GP. He was so cold, unfeeling, and blunt. I saw him twice and each time went home and cried.

The good news is that he is fired! I found a new doctor - Dr. A - about 20 minutes away, and she is so much more positive and hopeful. She tells me that the worst is behind me. We have a diagnosis and now we move forward and manage it. I was so relieved to find someone who did a good thorough exam and provided me with a hopeful caring diagnosis.

I am most likely going to head in to New York City for a full work-up at the NY Hospital for Joint Diseases. My mom has contacted a doctor there and we're working on setting up an appointment just to cover all my basis.

My dear baby is screaming his head off, so I guess that means it's time for bed. Off to comfort...

new symptom of the day

2007-10-28T15:50:00.000-04:00

Lupus is so bizarre, symptoms change on a daily basis.

I was feeling pretty good on Friday night, chatted with my mom and was fairly upbeat about everything. Then, I woke up around 1 am with swelling and pain in between my ear and my jaw. It hurt so bad, I couldn't sleep on that side of my head! Of course it's the weekend when doctors go into hiding, so I didn't know what to do.

I did some googling and self-diagnosed that I probably have Sjögren's Syndrome. It often goes hand in hand with lupus, and it involves swollen salivary glands, which are just next to the ear and jaw.

On top of this, I have a rash running down my neck and chest. I assumed that this was associated with the malar rash on my face, but now I'm worried that it's hives caused by the Plaquenil. Arg. I really don't want to have to stop taking the Plaquenil because the other drugs I would have to try and much more potent and yukky.

I'll call the doctor tomorrow because I'm willing to self-diagnose for the weekend, but I come to my senses when Monday rolls around. Hopefully I'll be able to get some answers over the phone.

welcome to lupus boo

2007-10-25T15:46:00.000-04:00

So, a friend of mine said once that blogs were self-indulgent. Well, some are and some aren't. I had a blog to post photos and updates about my baby-to-be -- that was a blog about sharing. I have a blog for my retail shop and that's about marketing.

Well, this blog is about self-indulgence. If you don't like that then luckily for you you don't have to read it :)

I wanted to start my lupus blog. First off, lupus sucks. This isn't really up for debate, I don't think you'll find anyone who disagrees with this statement. There are so many reasons that lupus sucks. Pain throughout your entire body, both muscles and joints. Random low-grade fevers. A big ol' rash all across your face (that hurts AND itches, joy joy). Sensitivity to sunlight - what, now I'm a VAMPIRE??

I was diagnosed a couple weeks ago with lupus. It shocked the hell out of me. I went in to the doctor because I had a little rash on the bridge of my nose. I was afraid it was skin cancer, but my doctor didn't think so. She tested for all sorts of things, and my tests came back "sky high" for lupus.

This is not news I was in the mood to hear. We have a 14 month old baby, have recently moved to a new state and just started a business with my husband. I really felt like we were *just* hanging on and then WHAMO! -- lupus??? what the heck.

So I've gone through the gamut of emotions -- sadness, anger, "why me??" etc. I am working on acceptance, but it's going to be a while.

There is no cure for lupus. Treatment ranges from taking anti-inflammatory drugs (aspirin, advil, etc) to anti-malarial drugs to corticosteroids. I started taking Planquenil 2 weeks ago, and went in for tests this morning. I'll find out the results in a couple weeks when I go to the doc.

And on the topic of the doc. Lupus is generally treated by a rheumatologist. The guy I've seen so far is a Putz (capital "P" intended). I'm only going to him until I find someone new. This doc blew off my questions about any alternative or complimentary therapies and when he heard I was breastfeeding, he said bluntly Oh you'll have to stop...like it was no big deal. And as a matter of fact, I'd have to stop that day because I needed to start taking the Planquenil *that evening*. Yes, I'm going to just *stop* breastfeeding my baby today, it's that simple. Umm, no. I went home and looked up the drug, and it's classified as safe for breastfeeding. So doc=lame-o and I won't see him any longer than I have to.

I guess this is a long enough post for today. This blog will basically be my ranting and raving and sharing how I am dealing with this interesting/frustrating/sucky turn in my life. It's mainly for me to get my thoughts out of my head, but maybe some other folks will benefit if they are going through similar stuff.