so, it's been a long time (take 2)

so, sure, it's been 3 years since I updated this blog, but hey, I've got a lot going on :)

ah, life with lupus...certainly not how I expected things to turn out! the brain tumor, eh, that seems to be just an extra added bonus :(

anyway, things are going OK

I've been feeling pretty good for the past couple years...I have been taking prednisone 10mg and weekly methotrexate (7.5 mg - 10 mg), which really doesn't thrill me, but if I'm going to feel better, I guess hardcore drugs are what I'm going to have to do. I'm still with a rheumatologist I like and trust, and that's so important to me. I drive about an hour to see him, but I only go about every 4 months or so, so it's worth it.

My most recent lupus-ism was 2 seizures (or somethings...) that I had over the past 4 months or so. The exciting symptom of these was something called "aphasia" - in my case, my language skills got all wonky -- for example, we were going to the ER (because I was experiencing this weirdness) and I needed to tell my husband to go to the Princeton hospital. I could NOT for the life of me come up with the word "Princeton." I could describe it, I could direct him to the location, but the word eluded me -- VERY FRUSTRATING!!

Anyway, had to start seeing a neurologist so they could try and figure out what was going on, but after a whirlwind month and zillions of tests (I called it getting sucked in to the medical vortex --- arg), they really didn't have any answers. I finally went and saw my rheumy, and he was like, oh, sure, that's part of lupus :/ Probably good that I went to the neuro, though some of those test, ugh!

So that's pretty much the lupus update. I'm a bit emotionally bummed lately, it's hard to accept such major life changes and disappointments when life just doesn't go as planned (especially since was such a control freak...trying to let that go...but only doing so-so on that end). It's hard to accept that I have 2 master's degrees, including one in library science, and I probably will never actually get to follow through on a career as a librarian -- dealing with the health issues on top of all those lovely florescent lights found in most libraries make it kinda hard...not to mention the job market stinks and I've been out of the loop for a while now...maybe in the future once life calms down a bit...and I do keep applying :)

On the personal side, we just started homeschooling my 8 year old son -- we're doing a combo between relaxed homeschooling and sending him to an alternative hippie school :) www.voyagerskids.com -- cooking and yoga, robotics and fairy tales, how can you go wrong?? :) He goes there 3 days a week, and we do neat stuff on the other two days - some basic schooling, park days, we'll do museum trips etc. It's going well so far :) I'm glad I am feeling well enough to do this with him, though we're a bit slow getting going in the morning sometimes...but that's the plus of homeschooling, we can have a nice flexible schedule.

OK, this turned into an uber-post, but an update after so long needs to be told ;)

oh and re: the brain tumor (sad that a brain tumor is an afterthought ;), I'm getting regular MRIs (a few a year) and there has been no change, so basically just in a holding pattern on that end...

it's been a long time...

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!

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

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

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

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!!

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.