instantkarmma: (BS)
I do not have the plague...though I'm still dubious. With my luck I'll incubate until no other person alive could still muster an illness and THEN come down with it. It's pneumonia, by the way. We found out our houseguest/squatter was in the hospital for about 4 days with it. Awesome. Also, during my "OHGODNONONO" google-ing I realized I had walking pneumonia when we got back from Denver. Because I am fancy. Thankfully Dr. Gorman had figured it was *something* deserving of a course of antibiotics and that plus waiting it out is all you can do, which is what I did. But still, dang.

We're mostly settled here and are hitting that "oh shoot, we need X" phase that tends to cost more than you think. Of course, I am a cheap bastard. There's the "Hey, we give a damn about this house and want to make it awesome. Let's hang up all of our artwork!" part. That part requires a bunch of frames for previously un-framed stuff and of COURSE nothing we have can be a normal size that you can buy at Target or whatever so I had to buy them on Amazon and $$$. Then there's the "these blinds aren't enough for our day-sleeping vampire eyes and hanging up our old curtains by clamping them to the valence rod makes us look like hillbillies"  part. So I scour the intertubes and find nice ones at Target and $$$. New bookcase and $$$. Building pantry staples back up and $$$. Replacing exterior door hardware and then replacing a door because the doorknob was set really far in on the other door but we're keying everything to work on the same key so we need to replace that whole door and $$$. Our tax refund was pretty hefty though since the house closed before the end of the year and we got to deduct ALL that shiz, so it's not like we can't afford it but I'm bad at spending large-ish sums of money.

Since we moved I got a hold of Robbie to see what he wanted out of the gear he had left in the basement and to make him come carry stuff. But now I just miss being in a band again. Part of it is wanting to be back on a stage. We've been so wrapped up in the house stuff for the last many months that I'm feeling really isolated and want people to clap for me. The biggest part though I think is just wanting that band camaraderie back. I miss the jokes and practice and post-practice hang-outs. I'm toying with the idea of getting a couple friends together and doing like a Smiths/Morrissey or college radio cover night just to get it out of my system.
instantkarmma: (*sigh*)
So we got a message on Paul's cell phone the other night from a friend of ours. He had been riding around on busses for days straight because he had nowhere to go. Paul went and picked him up and we parked him in our guest room. Problem is, he's sick as Hell and I'm trying to be hospitable but whatever he's got could literally kill me. I'm not dying from something lame like the flu, I'm only 37 damnit. I called to get the power turned on at the other house though so he has a place to stay for a few weeks until the tenants move in.

Part of me is upset that I can't be more accomodating but...wacky immune system etc. The other part of me though is screaming that I cannot be his social worker nor his therapist but he's in such a bad way that it's hard to bite my tongue. It's sometimes a hard line to walk between "I'm chatting with a good friend and they need advice/reassurance" and "give me the reins, you're cocking this up and I'm going to give you step-by-step instructions on how to fix it." This time though, I can see the edge of the abyss and I know I need to stay the Hell away. We're helping in the best way we are able and I'm glad, but I need it out from under my nose because social work is my job and your job doesn't belong at home.

On top of all of it, he's gone very conspiracy theory/uber-hippy pothead who is trashing vaccines and pretty much all of Western medicine. And I can respect that, I've seen Naturopaths and Acupuncturists and am open to all of that but so far all that has kept me functioning is hard-core, chemical-laden chemo. So having someone come into my house and trash the means I use to stay alive...sucks. (he wasn't attacking me or my treatment, just speaking in general but you don't eat your BLT's in someone else's Kosher household)
instantkarmma: (BS)
I can write some of these off to "new house, still getting used to where we put things, smacking my shins on EVERYTHING" but I've got some massive bruises in odd places. Like the entire lower left quadrant of my torso. Not a clue how it could have happened. I'm beginning to worry that it's due to one of the drugs, because I'm super-pale and every little spot shows up on me but this is way out of hand. I'm honestly freaking out a bit that my RA/Lupus might be flaring back up. My hips and knees have been aching so badly that I'm having trouble sleeping and have been napping for hours every day which is really out of character for me. And my fingers are getting "sticky", I've had to pry my right hand open pretty regularly over the past week. Ugh.

We're getting close to having the house unpacked and arranged and getting things figured out. I was so excited to have good bathtubs but it seemed like we could never get the water hot enough and it like the hot water ran out on the quick side when taking showers. This weekend though I found the temp setting thing on the water heater and cranked it up so I think the problem is solved. Things stayed nice and hot when I took my shower today. And holy cow we have a kitchen table in the middle of our giant kitchen that is actually easy and enjoyable to cook in. It's slowly starting to feel like we live here, not like we're staying in someone else's house
instantkarmma: (BS)
We actually closed the day of Christmas Eve. Everyone involved (title company types) were all "what a lovely Christmas gift for you!" while Paul, Tami, & I were thinking "about f*cking time, bitches. We've been at this since August." Seriously, four bloody months to finish this up AND now the loan comapny is trying to fudge the terms. Tami set it up so that the overall cost of the mortgage insurance was rolled into the loan itself rather than be a monthly payment, which is really in their favor because that way it's a part of the financed cost rather than something we can re-fi out of in 6 months. So even though we have keys and 90% of our stuff is here now it still doesn't seem resolved or complete. Because who would want to be done dealing with something so SUPER-FUN?!?!

I did a deeper closet purge a few days after we moved in partly because my folded stuff wasn't fitting the way I wanted and partly because it was time to get rid of some things that still fit but that I wouldn't need, like super-professional clothes. I figure if I ever need anything like that again I can build that part of my wardrobe back up with clothing people are wearing this century.

Paul has been working his ass off getting everything moved. By the time we actually got the keys any hope of getting movers was dead. James and Alice came by to be the real muscle and Mom & Steve came and brought Mom's friend Patti who she's known since high school. Patti actually moved quite a bit herself and she & mom helped me unpack the kitchen. While we were doing that they were reminiscing about the neighborhood (my mom grew up a few blocks away) and Patti was saying "it's still so familiar! I mean Dan's (her husband) sister lives over here and so-and-so's house is further up this street and a man my mom used to see, Mr. X, lived on that corner there." and I said "X? No, that's this house. That's the name of who we bought it from." Which shows you how small the world is. She immediately called her mom and we all had quite the laugh. And while the Xs left some things behind that we like (a kitchen table and entertainment center & desk) they left quite a few things we don't want or need and getting rid of them while trying to arrange our own stuff is proving to be a bit of a headache, especially for Paul who is having an itchy brain over "too much stuff!" in the way.

So yeah. Moved, but still no closure. But at least I don't have to go downstairs to the bathroom at night :)
instantkarmma: (zedd)
STILL working on the mortage crap. Pretty sure we have a discrimination case but none of us wants to do anything before we close and blow the whole thing. Drug day was last Thursday though, and the need to be done with stairs is *very* strong. Also, the chemo is giving me all kinds of fun side effects. I just started Plaquenil (a Lupus-centric drug) and all this tummy fun time may be due to that too. After 4 years I'm still nowhere near normal so now we're rechecking Lupus labs and seeing if getting a handle on the RA is giving the Lupus a way to flare up. Nothing is ever easy.

And the 14th was the 15th anniversary of leaving Stump. I wonder if I would even recognize that me. The days leading up to it were far worse than the day itself (nice to know that bit of wisdom I taught in my grief support groups is true) and I think being overwhelmed with the house & Rupus may have helped me not to dwell on it as much.

Still so tired. SO tired. This fatigue is out of hand
instantkarmma: (ham)
I finally got a hold of the bank about clearing up a credit discrepancy and it was the only thing standing in the way of full mortgage approval. They said we were in the clear & they had notified the credit bureaus and were sending us a letter to that effect. We've had so many close calls though, i think I may call back tomorrow and have them check the file again to make sure there's no "ha-ha! Just kidding!" coming our way :)

Tonight we took Alice out for fancy dinner to celebrate and stuffed ourselves like little piggies, dessert and all. Then Alice stole the check :P It was our plan to treat since she basically fronted us the money to do this until my inheritance comes but she was having none of it apparently.

So basically, once this letter comes we can ask for keys and start moving. We could be in the new place by this time next week! I want to do all the dorky things like switching the cable & utilities and figuring out where the cat's dishes go and deciding where to put the trash cans.

Ugh, fingers crossed!
instantkarmma: (zedd)
the little brat. I'm convinced he is not a cat at all, with his loved of baked goods and crackers and all that but since Belly wants things a normal feline would (like, turkey off of your sandwich) Zedd has expanded his tastes. Still, jalapeno-laced crackers?

And now while my brain feels like it is exploding and leaking out of my ears do to this awesome house-buying project (you have funding! No you don't. Yes you do, just with this other company! No you don't. Yes you do, we just want more money. And your kidney. And your promise to kill someone of our choosing should the time come. Just kidding, you can finance here instead but we'll make you wait another month and so on) I figured it's time to be all thankful and pull myself out of this sourpuss funk:

My doctor is awesome
We're able to even attempt to buy a house in the current economic climate
My husband is amazing
Even when my joints hurt, my cats come to love on me (probably because my joints are nice and warm :D )
The internet helps keep me connected to my friends
And it's pumpkin spice latte season. Hell yes.
instantkarmma: (*sigh*)
Seriously, this is God's way of messing with me. Make me a control-freak worrywart stressball and then give me a disease that is exascerbated by stress.

Last weekend I went down to California for my Grandpa's funeral. I'm officially all out of grandparents :/ We *thought* we'd be knee-deep in moving so I went by myself, plus it turned out the funeral was Saturday not Friday so Paul wouldn't have made it back in time for work Sunday. So I, the blackest of sheep, flew down with James on Friday and drove our rental car out to the hotel. The family was of course pretty drunk when we got there but we did our duty and hung out briefly in the "party" room before running back to our room and ordering room service. Thankfully we had a room to ourselves and make pretty good hotel roommates which is awesome because it's another facet to our sibling-y relationship. Also, we both agree that sleep number beds are crap. Who knew a Radisson would have fancy beds but they just aren't comfortable at any number. I'm not sure why James hated his but I sleep on my side and there is NO give. It's a glorified air mattress. The funeral mass was nice and Vandenburg Air Force base sent soldiers to be pall bearers at the cemetary, which was a surprise. 21 gun salute, presentation of the flag, the whole 9 yards. It was a lovely send off. For the first time in as long as I can remember all of the cousins were together & the first 5 (Cindy, Gretchen, Anna, Shannon, & me)...I don't think we've all been in the same place in probably 25 years. So it was really nice to see them and catch up together. I'm glad I went so I could be there for my dad but yeah the family awkwardness level was high, but I survived.

Now if we could just get moved, that would be awesome. We're dealing with the underwriter now and though our financing guy says we got a good one it's still a bit of a battle. There are a lot of hoops to jump through, but we were expecting that & I'd rather have them throwing out hoops now than denying us right before closing like what happened 4 years ago. I hate not knowing though and am just ready for something to HAPPEN. This suspense bites. Coupled with the weather changes, this is driving my Rupus nuts. HAPPENHAPPENHAPPEN!!!!
instantkarmma: (ham)
Mom and Steve were coming through town on my birthday and we set up an appointment to look at the house we had an offer on in Fircrest. Steve wanted to take a look at the upstairs bedroom and see how difficult it would be to put a half bath in. Alice came too since she wanted to see inside the house. Everyone liked it but wasn't super-crazy about it. The day before I took Paul to see a different house in North Tacoma that I had seen with the agent earlier in the week. It's very big and in a very nice area and kind of over my comfort zone budget-wise, but it's one level and already has a bath in the master (a FULL bath) and although it's never been updated it's been VERY well cared for. And of course we don't really care about the updated part and I have an intense love of wood paneling which is all over the family room. So I mentioned while we were in the Fircrest house that we had looked at this other one so we all headed over there and everyone FLIPPED. And everyone but me agreed we should pay whatever it took to get it. The mortgage place approved us for a very hefty amount so the only issue was what we felt comfortable with as far as monthly payments. Paul and I have never been the kind of people to live above our means or usually even AT our means and this house is going to put a toe over our means line. Granted, it may be for as little as 6 months since that's how long we have to own the property before we can refinance and by refinancing we get rid of the mortgage insurance which is what's driving the payment amount out of my comfort zone in the first place. And Paul's like "I can always pick up some overtime if we need it" and Alice said "I'll put off buying my car if you guys need the money, we NEED this house!" ( A: I don't know how Alice became so awesome. People have always assumed we're sisters or cousins and I think at this point we pretty much are sisters and B: She, Mom, and Steve have already laid claim to "their" rooms in the house) Paul hit the nail on the head when he told Mom I have a hard time pulling the trigger on any major purchase. I mean, I've done the math and it may get snug but it's doable. I don't know why I get so worked up over this stuff. No one in my family does, which adds credibility to Mom's story that I was hatched in the woods.

Anyway, I got word today that our offer was accepted so I imagine I won't be sleeping much until we close :D The 5 of us went out to dinner afterwards at this super-yummy Southern food place we found with Libby & Stephen on Paul's birthday then Alice declared she was putting off my birthday gift until we moved so she could get something for the house. I seriously wish I could turn off the worry center of my brain. I imagine once I get to take a bath in my new giant bathtub it will get a lot easier :) 
instantkarmma: (*sigh*)
as described quite well by Allie Brosh: http://hyperboleandahalf.blogspot.com/2010/05/sneaky-hate-spiral.html

It's especially crummy during chemo time with all of the steroids pumped into me and the other drugs I take to counteract the side effects. Plus a TON of my hair has fallen out since the last drug day and I still have another one Friday. I get my hair done Saturday (I've started seeing my mom's guy down in Olympia since she and I usually meet up after her appointment to hang out, but since mine is so thin and not growing too quickly I only go every third time or so) and I'm hoping he will lie to me and say it doesn't look so bad :) Alice has been at her family reunion for the last couple of weeks and it's too hot to go to yoga so my routine is all thrown off, I still feel some serious animosity toward Nathan and that whole cluster of a situation and it all just gets amplified SO. MUCH. through the joys of solumedrol. And while this medication seems to be working the best so far, my sedimentation rate is still 25 (below 20 can be considered normal, and granted I began this journey at like 89 :/ ) and the side effects can be rough.

But on the bright side, we're much closer to a new house. And in Fircrest of all places! Fircrest is kind of the Bellevue of Tacoma, kind of the upscale suburbs. My focus had been North Tacoma but property taxes are kind of high there and while we've found a couple places we liked a lot, the majority of what we like is in Fircrest. And it's so *quiet* there! Granted, we'll be the weird, tye-dye wearing childless Goths in the land of soccer moms and families that take their boats out on the weekend but we're OK with that :) We have an accepted offer in on one house, kind of similar to ours now in that the upstairs is a big open space but the overall house is bigger and better laid out but we'd need to put in a half bath upstairs (since that's one of the main reasons we're moving) and we have to wait through a short-sale period. My concern is that it's going to be too difficult or expensive to put the bathroom in but we're going to bring a plumber along when we have the inspection done and can back out if that's the case. Or we could be outbid, so we're still looking to be safe. There's one I'm really dying to see, that because it hasn't been updated since...ever, I think we can get in our price range. Plus, I love that it's not really updated because it's so 60's inside. And it's brick. AND it's all one level with a finished daylight basement. I know Paul loves the one we already have the offer in on & I've been disappointed by pictures vs. reality plenty of times but I'm keeping my fingers crossed anyway.

Friday after drugs we're going to dinner with James for his birthday and Alice is back soon and it can't possibly stay this hot much longer, so hopefully I'll have an easier time combating the chemo blues after the next dose.
instantkarmma: (*sigh*)
Drug day is Thursday and I'm really feeling it. I'm not sure it's all the Lupus though, it's the house-buying stress and the heat lately, I haven't been to yoga in pretty much forever and I'm *just* getting over the plague I was coming down with before we went to Denver. Today is the first day I haven't had a throat drop in at least a month and I almost have my singing voice back. That was freaking terrifying, a couple weeks ago I went to sing along to the radio and what came out was NOT what usually comes out of my face. I was beginning to think there had been real damage done and I could not handle my body betraying the last thing I had going for me, but today it was a bit better with only a couple twinges from the hurt spot in my throat.

I really just wanted to have the house stuff decided before drug day to get me through the next 6 weeks of chemo Hell. I just wanted a closing date or SOMEthing to keep me going. We found a couple places we liked but we weren't able to come to a price that worked for everyone. I think the first house is a lost cause but that if we keep our eye on the second one they may drop the price and we can jump back on it and get it figured out. But for now we continue to look & we may wind up finding one we like better. We've been having to remind each other that we are looking for the "forever" house and to not compromise. With the market coming back up though I'm feeling a bit of a time crunch because I don't want to get priced out of the area we want to be in but also because having to go up & down the stairs to the bathroom multiple times a night is just killing me pain & sleep wise. The only other solution I can think of is to drug up before bed and hope I can sleep through the pain but the drugs wear off and I don't want to be dependent on drugs to go to bed. I'm very careful with how I take muscle relaxers & narcotics (much to my doctor's chagrin) because I don't want them to lose effectiveness or become dependent. There are still a few days before drug day though, still time to house hunt and maybe get an offer in.

Good CRAP my knees hurt. I need to go to yoga so badly but it's hard to get motivated in this much pain and with this damn heat. Lupus, sometimes you make things very difficult.
instantkarmma: (zedd)
We went to Denver last month for our friend Petra's wedding. The sun/heat/elevation did awful things to me but it was all worth it for the trip. I had brought two dresses with me (I ordered one, then the place told me they didn't have it so I scrambled to find another one. Ordered a new one, original place tells me they found the dress I ordered. Thus, two dresses) After expressing my concerns over FB and texting to Libby & Jessica, I decided to risk the halter strap dress for the wedding. I was worried it might be a little "TITS AHOY" for a wedding. Paul and Stephen and I stopped to grab a bite before heading to the ceremony and I asked them if the top was too revealing for a wedding. Stephen says to me "darling, you are asking this of two heterosexual men who enjoy breasts. We are the target audience and thus not the ones to ask" Ha ha, boys :P But I got them to agree that it was "well, that woman looks nice and has attractive cleavage" rather than "that chick looks cheap with her tits hanging out" But then of course upon seeing Jessica and later Libby they both said "wow, that dress is awesome! And your boobs look amazing" So I've quit worrying about my boobs. Although halter straps and I don't get along very well, hurts the back of my neck. I'm so glad we got to be there for the wedding though, the ceremony was perfect, plus I got to see people I don't get to see often and needed some serious hugs. AND I got to hold hands with an adorable almost-three-year-old and dance with my husband :)

Now we are currently in the process of trying to unload this house. I hate it much less now that we have an actual kitchen, but it still not our "forever house" and it was never meant to be but thanks to the Rupus we've been here longer than intended. I need a house with a bathroom on the same floor as our bedroom and have always wanted to live in a particular area of Tacoma. I've put this house up on a couple of free sites to see if I can drum up a little interest without having to pay for a listing site (our Realtor suggested selling ourselves to save us money) I've gotten interest from a few investors which I think is the best option since they either have the time & money to flip it or rent it out. Mostly I'm just ready to feel settled. The Rupus is still in flux and will likely stay that way and I just need something to be positive and permanent. I can tell this latest round of drugs is wearing off and am desperate to get things accomplished while I'm still feeling semi-functional. Plus house-hunting is my favorite thing EVER and I want to get to it!
instantkarmma: (ham)
Yesterday Mom & Steve came up to have a look at the kitchen counter-spot and wound up...telling us we're getting a new(ish) kitchen, courtesy of their friends in Ocean Shores who are remodeling their kitchen. They were going to sell the entire set of cabinets on craigslist for $50. Normally even on CL you're looking at $500-$1000 for a kitchen's worth of cabinets. So Mom said "ummmmmm,nope!" and had Steve go measure and plan. Then he had a damn field day in our kitchen figuring out how he wants to set it up, checking wiring and studs. All it will cost *us* is the rest of the countertops, which even if we wind up having to replace what's already there will be a pittance compared to what we're getting in return. Paul is starting to get excited, I'm still kind of giving the whole situation the side-eye like it cannot possibly be that easy. And of course the weird part of me going "hey, I just spent $100 on that pantry, damnit!" Having the nook out of there makes it much easier to envision rearranging things. I'm trying not to go too nuts though, because even if the kitchen turns out amazing it will still be the better part of a year before we get to really move & I'm already cruising real estate sites :/

What's funny is that I was talking to my dad last week about our home improvement/get the heck out of Dodge plans and he said "that sounds awesome, Meliss! Once you start fixing up a place though, sometimes you start to like it again" and I'm thinking "not a problem, I never liked this place to begin with!" It does make me a little nervous though, because the awful kitchen is one of the things I disliked most about this place but even a nice kitchen isn't going to trump the fact that I want to settle in our preferred neighborhood AND this house will still only have one bathroom. It is funny that 5 days after having that conversation with Dad Mom's like "new kitchen!"

I grilled Mom while we were out shopping if Steve was really OK doing all of this for us. He seems to think it will only take a couple days plus Paul will be on vacation during the time he wanted to do it anyway so he'll have help. Steve normally works seasonally repairing & rebuilding boat motors and picks up odd jobs in the off season because he...he doesn't handle down-time well. Dude CANNOT sit still, ever. So I was curious about if he was cool with this or if Mom volun-told him it was happening so he didn't drive her nuts but she said it was all him. Apparently she makes suggestions about things they can get us or do for us around the house (for two years in a row our Christmas gift was mom buying our new front & back doors and Steve installing them) and every other time he's said it's not a good idea/it would be too much work with our old house/it would wind up being too expensive/etc. but his response to these cabinets was "oh boy oh boy oh boy!!!" (literally. He says this.) And judging by his behavior yesterday, he may be more excited by the prospect than we are. Still the side-eye from me though. We'll see...
instantkarmma: (ham)
We have been in our current house many years longer than we thought we would be (thanks, Rupus!) and I recently kind of made the executive decision that next year we are Audi 5000. With the Rituxan appearing to work pretty well, I've got kind of this urgency to get things done. Like "I've got a modicum of energy and brain power, let's do ALL THE THINGS!" but I think it's also helping to have something tangible to focus on.

I've never been a huge fan of this house but we had already sold our house in Lacey and homes in Tacoma in our price range were going quickly so we jumped on this, mostly because it had a functional basement for the band. There's only one bathroom (and I'd prefer at least a bath & a half for those moments when you get home and are rock-paper-scissor-ing on who gets in there first) and this kitchen...it is not a kitchen. It is a room with a stove and a fridge in it. There's a serious lack of both cabinet and counter space and we have to work around our portable dishwasher. Our friends Mark & Schandra gave us their breakfast nook when we moved in and while it's awesome, it takes up the entire nook space. It honestly looks like it was made for the spot but it eliminates a lot of space. Plus when we moved, this neighborhood was on it's way up. Not necessarily gentrifying, but people fixing up their homes and taking pride in the neighborhood. Then the housing market crashed yaaaaaay! So time for a change.

Since we had the living room redone when I got my disability back pay that eliminated a HUGE cost in getting this house ready to go. So I figure we'll spend the spring/summer doing the rest and have a Realtor come check it out in the fall so we're ready to go around tax time next year (refund = bigger down payment. Hopefully we can at least break even on this house). Last week Alice and I changed out the wall sconces in the office and game room from cheesy tin ones to nice brushed nickel/frosted glass ones. Yesterday we fixed the wonky outlet by the kitchen sink and figured out how to fix the outdoor faucets. Today I ordered a pantry cabinet for the kitchen and put the nook up on Craigslist. Then while we were at dinner I suggested to Paul that we go look at paint chips for the kitchen because I'd like to paint at least behind where the pantry will go before putting it up. So of course we came home with two gallons of paint :x We're going to have Mom's husband Steve come put an L-shaped counter top between the stove and fridge and I think all of that will "fix" the kitchen. Then I'm going to paint the office and game room and fix the stairwell to our room where the mattress ate it on the way up then the interior will be done as far as we can tell. We need to paint the trim on the outside of the house and get the yard/flower beds looking like know something about yards and trim the trees then power-wash the porch & walkways...all perfectly possible with a little help from friends/family we sucker into helping over the spring/summer.

All of this has actually helped to really put my mind at ease and give me something to work toward/look forward to. And it gives us time to prepare so we can concentrate on foreclosures and short sales to get into our prime neighborhood in a way we can afford. And of course of our our spiffing-up work means we won't be afraid of some elbow grease in the new place. So please oh please keep mostly working, Rituxan & be nice to me, Rupus.

Now I just have to keep myself off of real estate search sites and falling in love with houses that in all likelihood will be gone by the time we can do anything about it :D 
instantkarmma: (*sigh*)
The one thing that frustrates me more than any other about being sick is at the moment...this is all I have. I don't have a work shift to think about or music stuff at the moment to take up the space in my brain. I get *this* and it's the focus of my life and not for the last time. This latest infusion has hit me like a brick and with some very chemo-esque symptoms, which makes sense since this *is* chemo. I get the drugs cancer patients get because my immune system just won't STAHHHHHHHHHHHHHP! So I've been living on tea and soup and such for about a week. And next week, I get to do it all again.

I'm still adjusting to the thought that I may not have a traditional job again, but that's kind of lead me to why I define my worth by my work. There are plenty of men and women who are not ill who are house-spouses and happy to be so. Paul and I have been together for 13 years and he's never given me any reason to think he won't support me financially and physically/mentally/etc. And if something should happen to him, Alice and I have already talked about staying together. So really, I don't need to worry about being alone. But I love working and I love helping and I want to figure out how to fit that into my life but I'm trying to take things slowly and learn what is reasonable for me to undertake. Part of me wants to go right back to working with kids and mental health but more and more I think I want to continue grief work or palliative/hospice work. Bridges was the place I felt most like I was a "professional" and the work was the most rewarding. You are meeting people at the lowest point and helping them to process and adjust and discover a new normal. Then there's the part of me that grew up in nursing homes and knows not everyone has someone to be with them and care about them before they die and I feel like that would be a powerful thing to give people. Stuff to mull.

But for now I get to focus on the people I love. We got to go to Jes' wedding this past weekend and will go to Petra's in June & see more folks we love. James' school load slows down in the summer so hopefully we can see him a bit more. The yoga studio moved to a gorgeous new space that's actually a little closer to me. Things *are* good, this new med seems to be helping, I just need to learn to get out of my head more. It's noisy in there.
instantkarmma: (*sigh*)
My friend Annie died a week and a half ago. It was a blood clot, caught everyone off-guard. I've cried quite a bit about it but it's still hard to wrap my head around the fact that my friend, someone near my own age, is no longer here. There have been people that I knew from High School, etc. that have passed away but I really hadn't seen them or thought much about them *since* High School. Other than that it's been older people like grandparents or people who had long illnesses. None of us had really gotten to say goodbye to her because who could see this coming?

I wasn't as close to Annie as a lot of the Seattle crew was. Partly due to proximity and partly due to the fact that she and I seemed to have the same flavor of "shy" and it was difficult to be closer/know each other better. But any time we saw each other, we doubtlessly be hanging out in a corner talking about video games or music or dogs. She & I spent hours in a hospital room helping a friend out in December. A few weeks ago I hooked her up with another friend of mine who did technical recruiting to try and help her secure another job. But now suddenly she's no longer. It's bewildering.

We're doing a "Viking Funeral" memorial for her on Friday. Though everything seems to be being organized by folks I don't really know so I've been feeling really out of the loop but Libby said it's a common feeling for a lot of folks. Nathan orchestrated a song for her and is having her friends add vocals or instruments. I haven't heard the final mix yet, but sent him my vocals yesterday and it's turning out so beautifully. I was telling my mom about it today and she said "Oh so it's like 'We are the World' but for your friend?" and I told her to me it felt more like laying flowers on a grave but instead of flowers it's tracks on a song. It was a semi-healing process but SO not fun to do.

What was more healing for me was having Libby and Stephen stop by Saturday. I needed to hug her so badly since this happened and it was so good to see them both. We talked about getting the Hell out of Dodge for a few days soon because the last few months have been rough for various reasons. We had planned on grabbing coffee or dinner but it began snowing rather earnestly and it was dark so for safety's sake they got back on the road. A little while later Paul went down to the basement to work on music but the dog decided he needed to pee RIGHTNOW. So I let him out and stood in the doorway for a minute. It was bright in that way it gets when it snows, like it's twilight all night. It was bright and quiet with everything covered in a thick, white blanket. Normally I'm not a fan of snow, but in that moment it was almost peaceful. I hugged my friends, my wonderful husband was home, and for the first time in a week and a half things were almost peaceful.
instantkarmma: (*sigh*)
I've been out of sorts a bit lately & have blamed it mostly on the Rupus/meds. But yesterday I took a nap and had nightmares the whole time about Stump trying to suffocate me repeatedly. Like, I'd get away from him and start doing something else but then all of a sudden I'd be back in the same spot being suffocated. I told Paul when I got home that I'd had bad dreams about Stump and he said "why?" And I'm like "I don't know! Like I chose this :P"

And then right before I fell asleep it hit me: December 14th is rapidly approaching. The day I left Stump. Because of the timing of the infusions it really snuck up on me this year. Yet another reason why I'm not a fan of the holiday season.
instantkarmma: (crazy bitch)
It's been in the twenties for far too many days. At least it's been dry though so I don't have to worry about snow. It always fails to occur to me that the weather has an effect on my Rupus. I keep trying to blame myself and figure out how to fix it but try as I might I can't control the weather...yet. It's frustrating the Hell out of me that I struggle with things like "keeping my feet warm" and "bending my fingers" and partly because I'm too stubborn (proud?) to do extra things for myself. For some reason I feel guilty, like somehow it makes me weak to use an electric blanket and not because "gosh, an electric blanket sure would feel nice" but "I CANNOT get my feet warm even with two pairs of socks and slippers and a regular blanket" I don't know if it's just steroid blues, but I imagine that's amplifying things. I did my second round of Rituxan and didn't have any issues, other than the fact I had to do it twice :/ Most infusions have loading doses, like you'll have one then another in two weeks then another in a month then onto your regular schedule. So I thought the two infusions I did two weeks apart in July were loading doses and then I'd go in once every 4 months for another dose. NOPE, it's two doses two weeks apart every time. This wouldn't be such a big deal but it's usually at least a 5 hour process with me having to pee at least once an hour due to all the steroids and saline. It's kind of exhausting.

I also got to spend some time in a psych ward over the weekend keeping a friend company. It really made me miss working. An alarm went off and people went running by with restraints and I was halfway out of my chair before realizing "Uh, I don't work here, I don't help with containments..." It got me thinking that intake might be a good place for me if/when I can work again. I'm not ruling out going back to CSTC but I think something with shorter interactions might be the way to go. I know there would likely be plenty of repeat patients but each day hopefully I'd feel like I had an impact but not get too attached. It both has me thinking and has me longing for when my body (mostly) didn't betray the Hell out of me.

And I need to figure out some recipes that either freeze well or don't take a lot of dexterity/energy to prepare. I've been dragging hard lately and relying on convenience food doesn't help me feel any better. 
instantkarmma: (zombie)
This Rituxan may be working; I'm sick for the first time in three years. A common side effect of most Rupus drugs is "upper-respiratory problems" and so I've gotten sinus-y ick a number of times but this time I actually *caught* something. So it looks like this drug may have succeeded in compromising my immune system, which was the point. But still, it's been a while and it's taking forever to get rid of and it's not like my Rupus is in remission or anything so I still have all the stiffness and fatigue from that on top of this bug. Alice called after work last Wednesday to see if I wanted coffee and if I even felt well enough for company and I'm like "yeah, I'm getting over it. Bring on the coffee!" and she says "yeah see, I *want* to believe you but your baseline is way beyond what a normal person's is. Your 'feeling OK' is most people's 'deathbed' so are you SURE?"

Which has me wondering if that's truly the case and why. At least as far as my health goes, I'm stubborn as Hell. Even back when my feet were so swollen I could barely get flip-flops on I was all "let's go to Costco!" because especially since having to leave work I'm clinging to my routines and making sure I get out of the house at least 3 out of Paul's 4 workdays. There's no way I'm giving that up because I'm tired or sore or swollen. Reading the RA and Lupus groups on facebook though it seems like maybe I am in the minority. I've always had a crazy-high pain tolerance but some of these people are just so...fatalistic. And I don't know if those are just the kinds of people who need the support (meaning they don't have a good support system offline) or just like to whine or if it's just not in my personality to behave that way (to discuss such things publicly with people I don't know rather than privately with people I trust) or maybe my baseline is just unreasonable. It's confusing. Discernment has always been a problem for me.

It's a problem in other areas too, namely with Nathan at the moment. It may be another example of unreasonable baselines, but I don't know. Dealing with him has become a little infuriating. The communication from him has never been optimal but at least manageable, until recently. I've (and a few others, by themselves or with me or whathaveyou) talked to him every which way from Sunday until I'm blue in the face about things that need to change, like communication, like out of town shows that cost us time and money. When he had a day job it was both better and worse. Better in that he'd reimburse Jes for airport parking, worse in that he was single and had a day job and had more disposable income (especially when he was still playing with the Pork) and didn't consider the expenses the rest of us might have playing a free show in San Francisco for example. And I'd love love to be all "oh, I'm a musician! I just want a chance to play for people and I don't care about money, wheeeeeeeee!" like Nathan and my husband and a number of other people. But I managed a band for one, so I know what it takes to run one and for two I do all the budgeting and bills for our house so I have to consider the cost/benefit analysis of things. I need to have someone come watch the critters, we have to feed ourselves when we're out of town, etc. I can't be cavalier about things. And this isn't our band, it's Nathan's. We're not emotionally invested in it like civita, we don't get any credit for what we're doing. And I understand now that he's doing this for a living. Libby and I had a chat with him about budgeting for shows, and maybe having to pick and choose members for shows that couldn't afford everyone or that everyone couldn't afford to participate in. Paul suggested in an email that he let the person putting on the show know the expenses and let them choose how much of a show they wanted/could afford but so far it's all still been a cluster. And now I'm being usurped by some girl. She filled in for me at a show (which I was all for, I was still in the middle of a drug mess and just couldn't manage) but we show up to practice for the last show and...there she is. Not only did he not ask (which, it's his deal, but that would have been the polite thing to do) he didn't even tell anyone. I was totally blindsided and now I am out of things to say. I finally just gave the reigns to Paul, to either mediate or just talk to him or whatever. So again, I don't know if my baseline is unreasonable because my discernment sucks.

But tomorrow there will be coffee & Alice and I will watch "Supernatural" with Zedd the cat puddle between us and I will do my best to not overdo things.
instantkarmma: (crying?)
I tried out yesterday for a local choral group. I was hella effing nervous but mostly because I hadn't really auditioned for anything since HS. Weirdly, I had a gut feeling before I even signed up to audition that I wouldn't get in and not in a "I'm not good enough for this, it's a lost cause" way but more of a "this might be cool, but I doubt they'd take me" way. Because it's been forever since I've sung in that kind of setting and that's a pretty big hole in the resume for such a prestigious group. The audition itself went really well I thought. Good rapport with the director, my performance was better than I was anticipating. I still left feeling like "I did really well, still don't think I'm getting this though"

And today I got an email confirming that though they thought I was a badass, there were many badasses for very few spots. I texted Margie to let her know and she said "I'm so sorry, competition this year was especially fierce!" So while my audition my have earned me an A, there were probably a couple A+s that took the only soprano parts. That's the crappy part about being a soprano is that they are *everywhere*, kind of like guitar players.

So I went "well damn, no spot for me" on Facebook and people are flipping the Hell out. "It was rigged! They don't know what they're missing! They were dropped as children! Etc., etc." Calls, texts, everything. An honestly, that made it worse. All of the "Oh no! Are you OK?" kind of stuff. Yeah, actually, I was fine until you all descended on me to try and make me *feel* better. *shrug* Yes, I'm bummed but it's not the end of the world.

I went to yoga tonight to kind of combat it all. I haven't been in a couple weeks because it's been too damn hot for me not to feel like stir-fried death outside, much less in a warm yoga studio where the goal is to "build heat" and sweat. Plus my chest has been super inflamed. But I felt a serious yoga need, so off I went. I spoke up about chest opening poses when Pamela was asking for preferences and she delivered in spades. Bow pose, dancer's pose, side openers. It was a little rough but I felt good. After class Pamela made a beeline for me and said "Wow, you must be feeling much better! You were amazing tonight! There was a noticeable shift in your practice, so positive." and I told her I thought that shift was probably mental. My Rupus is *maybe* 5% less obnoxious than usual so there may be slight hope for the scary new poison drug, but more than anything I just needed to mentally shove some stuff out. Stress aggravates the Rupus and I'm a naturally worrier/stress-er kind of gal and tonight the focus was on the full moon and choosing new intentions and everything just kind of went *plink* and I was able to be really present. Our student teacher Heidi commented on it in the office too, that I must be feeling better and I said "I think I was really just in the zone" and she said "yeah you were! Every time I looked over for adjustments I was like 'psh, she's got this!' You did great modifications, it was awesome!" And I told them both I was surprised because I was fully anticipating adjustments and that when things feel easy I assume I'm doing it wrong and Heidi said "No, dude, that means you're doing it *right*"

That was a really nice way to close the book on the past month or so. We'll see if it holds up next class :)
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