9,131 Days

I'm twenty-five today.

Birthdays have never been much of a big deal for me. Not since I was a kid anyway. Dinner with family or a few close friends. No parties, no big fuss. I don't like gift-centered days in general. They make me uncomfortable. My brother and I were talking about materialism the other day and how little we both care about stuff. Maybe it comes from growing up at the lower end of the economic spectrum. Maybe it comes from the lack of emphasis on posessions in our parents' homes. I think that most of it comes from how people centric our family is. No one ever pushed us to reject things, but the people in our lives and the experiences that we shared were always so much more important.

I have to say, I think it's a pretty nice way to live. I get far more out of giving gifts than receiving them and when I do receive them I often get more enjoyment out of the sentiment behind the gift than the object itself.

I have been searching for some direction for the last few months. Since I finished my degree I've felt incredibly unproductive. I've also been searching for a career that I can build without being hindered by my illness. After all, even if the bone marrow transplant happens and is successful, I still may never be able to teach. The pulmonary hypertension might not be stopped by the BMT and there will always be a chance for my MCTD to reccur and knock me off my feet again. So with all of this in mind I've been examing my interests, talents, and jobs that I could do from home whether I am sick or not. After doing a lot of self-examination and consulting with my friends and family, I've decided to go back to school to get my A.S. in Digital Design. I've always been artistic. I was never dedicated enough to really develop that talent, but I did some pretty good work in high school and I really enjoyed it. Since high school I've done some work toying around with text and graphic layout and design for more crafty-type things and it's come together pretty well. More than that though, it will give me the ability to create something tangible, which I find extremely fulfilling, and it's something that I can either do for someone else from my home or even use to start a home based business.

So I'm planning to start taking classes at the local community college starting this summer.

But tonight when we got home from a long day of hauling stuff from the old apartment and doing some grocery shopping, my artistic aspirations were the last thing on my mind. BF unloaded the last of the packages from the car and then told me to close my eyes and put my hands out. When I opened them I found one of the most awesome gifts I've ever gotten. It's a professional drawing tablet for graphic design and software to give me everything I need. It's an incredible gift. Supremely expensive and very cool in and of itself, but that's not the part about it that really touched me. It was how much confidence he has in me, to spend so much time researching what would be the best iteration and talking to various people to find out whether it was the best tool to get me started. It was so thoughtful and so uplifting. Without saying a word he managed to show me how much he supports and believes in me.

With all of the awful stuff that has happened this year, it was exactly the gift that I needed. I may be facing the loss of a dear friend and an uphill battle for my own life. I may be broke and drowning in debt, but I am so blessed to have this man in my life and such a wonderful and supportive family surrounding me.. This is also something of an anniversary for us. Three years ago today he kissed me for the first time and we both fell hard. Looking back, my life without him was so empty and gray. Now I have love and hope for a long, happy future.

It's a pretty great birthday

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the gray one hates it.

The gray cat hates our new apartment. She's taken to yowling at anyone who gets close and isn't clearly trying to pet her. She's not an especially pleasant cat under normal circumstances, but she apparently hates change in a rather large way.

Tough. Everything's changing here. Constantly. And if the humans don't have a say in the matter, the cat most certainly doesn't.

We moved on Sunday. Three men, a box truck, and me. I felt utterly useless. I can't carry a chair, let alone a box of books. My doctor is always giving me her " c'mon, you're kidding" look when she tests my muscle strength. But the guys kicked ass and got us about 70% moved in. We have our old apartment for a month still, so we're in pretty good shape. I hate living among boxes and our couches are in that missing 30%, but the gray cat and I will both live.

On another front, BF's mom's prognosis has gone from bad to worse in the last week or so. The doc's revised her previous two year estimate to a quarter of that. We've got a hospital bed coming tomorrow and we're trying to get things set up as best we can to be as comfortable as it can be for her. She's still staying with my dad & family. It's actually been nice to have her there. We've been having big family dinners every night and hanging out a lot. It's sucks though. It just feels generally surreal. She's dealing with it well, but her health is very poor. BF is taking it well, but it's a lot to deal with. Home hospice is a lot to come at you out of the blue. I just hope that we can get a little bit of our life back here. All of this flux isn't good for any of us.

The orange cat, on the other hand, loves our new place. She's made herself thoroughly at home and has even stopped attacking the gray one. It's good to see somebody settled here. Especially that little feline fire ball. She breathes life into all of us. I'm hoping that she can give a much needed dose of levity to all of us.

[Posted with iBlogger from my iPhone]

Family.

Have I ever mentioned how amazing my family is? I don't know what I'd do without them.

BF's mom was discharged from the hospital. They sent her home to her second story apartment when she is hardly able to stand by herself, let alone get up the stairs. Her building has no elevator, so when BF got her home, they weren't able to get upstairs. It was a few moments of panic as to where she could stay. We also live in a second floor walk-up, so she couldn't stay here and the earliest we can move into the new place is next Sunday. My mom is a nurse, so the first thought that I had was that she might be able to stay there, but my mom's bathroom is on the second floor, so that was immediately out. But then I called my dad and my step-mom. Even with four kids in school and a baby at home they were able to set up their sun room as a spare bedroom and she's staying there until she can get moving again or until we get into the new place, whichever comes first. I'm so grateful to them for being so helpful and having such open hearts. They set things up for her with almost no notice and have been cooking and helping and just being awesome.

We spent the evening over there tonight and it was just such a joy. Little boys running around. Adults chatting away. I couldn't imagine living without them. I love them all so much.

Drama

I got my first anonymous post today. Highly entertaining as it was so specific that it couldn't possibly be left by anyone but BF's former sister-in-law, who goes by Caustic Cupcake online. So I figured that since she decided to make her communication to me public rather than just emailing me like an adult, I might as well make sure that everyone else gets to read it too.

If it's been three years and all of the resentment has been put behind you, why are you posting this entry?

I seem to recall the little boy's mom saying something similar about time having elapsed when you cried to her in a letter about how traumatic it was for you to have to see the Dreaded Aunt. Maybe you should give credit where credit is due.

Better yet, maybe you should drop all grudges and think of the boy first- and be grateful that you are so lucky to get to have him in you life and to love him, have him love you, and see him change and grow every day.

Now that is one caustic Cupcake.

So in exchange for her sweet comment and as a big thank you for being one of my most frequent readers, this one's just for her:

That was about as anonymous as the bright, shiny, new nails that you left under my tires. And it was just about as purpose driven.

#1. I never ever said I'd put that bullshit behind me. Why would I? You're still just as mean and nasty as you were then and last time I checked, if a dog bites you, the smart move is not turning your back and pretending it's no longer there. You drove an hour both ways to go to my house and put nails under my tires! And the last thing I heard from you on that subject was not let's see if we can put that behind us and be decent to each other because we both love the same little boy and we don't want to hurt him. No, you threatened me (2 years ago. There was still a little red Honda in that driveway until August '06 and you didn't pull that stunt until more than a month after I moved in) and then you gloated about it on your blog.

#2. I did not cry to anyone. I was pissed off and rightfully so. I had a major problem with your sister giving you my home address, email, and phone number without asking me if I was okay with it .

#3. I didn't have any problem with seeing you, I was perfectly willing to let the past stay there and to be just as cordial to you as I was to your boyfriend. You're the one who sent me a terse email, intentionally hiding your own personal email address, then showed up on my doorstep and refused to even say hello. That's not in that little boy's best interest. Your not interested in his best interest, you're interested in being a bitch. Every move you've made has made it perfectly obvious that you wanted to step on my toes as much as you could without being openly nasty. Passive aggression is still aggression.

#3.5 I don't even get this give credit where credit is due line. Who am I supposed to give credit to exactly? You haven't left anything in the past. Your sister was still wrong to give you my info without my say so. In fact, as far as I can tell I'm the only one who acted appropriately in this whole situation. (Besides being pissed about my personal information being handed over to someone who tried to flatten all of my tires, which I feel I was well within my rights to be, whether I went about it in the most tactful way or not.)

#5. Don't give me any of this bullshit about how I should just sit on my hands and be grateful that I get to spend time with him, as if that is some kind of right that you are conferring on me and have the ability to revoke. My seeing this child, loving him, watching and encouraging his growth, and being loved in return has absolutely nothing to do with you or with this situation. The only thing you're accomplishing with this immature crap is proving how bitter and vindictive you still are and showing how little interest you actually have in his best interest. I know, his mother knows, his father knows, everyone but you knows that this child is best served if the adults in his life can try their hardest to get along with one another. So he doesn't have to have two separate birthday parties every year. So he doesn't have to feel like a referee at his (insert sport of his choice) games. So he can have everyone he loves in one place without having any of them make him uncomfortable. The rest of us are doing that pretty damn well. We have all grown up and are living happier, more fulfilling lives than we were three years ago.

Why don't you join us?

I apologize for the sudden change in format here. I don't plan on making it a habit or letting this become that kind of blog. I certainly wish she'd just keep her mouth shut from here on out, which I doubt will happen, but I promise you won't have to read it if she doesn't. I'll get back to how insane things have been here and how great our new apartment is in short order.

Well that was...

Interesting.

About two minutes ago, the little man left here to go stay with his aunt in NJ for a couple days while his mom is away on business. I was assured by BF's ex that her sister was under strict orders to be on her best behavior as all of our previous encounters have been openly hostile. And I couldn't say that she was a bitch today. It's just that I wouldn't consider refusing to raise her eyes above the little man's eyeline or not saying a word to me to be nice. In fact, it was rather rude. Oh well. Her boyfriend was nice. Said hi, introduced himself, even shook my hand, but he is a logic professor after all, and what logic is there in hating someone for something they did to someone else three years ago?

So, we're moving.

BF's mom's got stage 4 squamous cell carcinoma. The prognosis is pretty crappy. It's awful. I don't even know how to express how awful. I feel like we were just getting to be close and now this. She seems to be doing well emotionally, but her health has gone down hill fast. She spent a week in the hospital, they let her out, and now, a week later, she's in the ICU. Her kidneys aren't functioning well and it's really doing a number on her. So, we're getting a bigger apartment and we're all going to move in together so that we can be there to help her. I'm actually looking forward to it. It's going to give us a chance to get to know one another much better and I won't have to worry about her being home alone with no one to give her the care that she needs.

So that's one part of my news. The other was supposed to be that BF got a new job and a big raise, but because of this whole situation with his mom and the move, we decided that it's not a good time to take on the stresses and demands of a new job. His current job made a great counter offer to keep him and he's been there for years, so the relationship is there and they're going to be flexible with time off and whatever else he needs over the coming months.

It's been a crazy couple of weeks. BF and I are both pretty stressed out. We're just trying to get everything in order so that we can deal with all of the issues that will surely come up. I feel awful for BF. He's going to have two of us to deal with now. His mom starts her chemo tomorrow and I could very well start with mine next month. We'll see. I think it's easier for both of us to handle because we've been living in the short term for so long now. I can't wait until the day comes when we can make real plans for the future.

Jesus Christ!

I wish I could tell you all about the crazy week I'm having. Unfortunately, I probably shouldn't let anything slip prematurely. None of it is regarding my health (or lack thereof), but just about everything else in my life feels like it's changing every day. Some of it is very good. Some of it is puzzling. Some of it is heart wrenching; a person very close to me has been diagnosed with cancer and is not expected to recover. It's like last week got poured into a martini shaker and mixed thoroughly.

I'll have more to say about all of this cryptic crap as soon as we make some firm decisions and let some people in the real world know about them. Wouldn't want anyone who needs to know to read it here before I have the chance to let them know in person. It's killing me though. I'm a pretty open book and I like it that way, but sometimes I put the cart before the horse and end up embarrassing myself.

Air.

I can't even put into words how happy I am with my new rheumatologist. It's like a breath of fresh air after sitting in a smokey room. She spent forty-five minutes with me yesterday, at a follow up visit. I don't know the last time I got more than fifteen minutes of a doctor's time. She went through all of my lab work and the radiologist's report on my CT scan and explained what each test was for and what the results meant. It blew me away. I had no idea what I was missing.

I know that probably sounds odd to anyone who has never really needed to spend more than fifteen minutes with a doctor. I certainly never had more than fifteen minutes worth of stuff to talk to a doctor about before I got sick. If you have an ear infection, a cold, anything else that isn't chronic, there's not all that much to say, but when you have sixteen different blood tests for various antibodies and complment levels and radiologic tests, there's plenty to talk about. It's also awesome to have someone there who will talk out your options, the pros and cons of everything and to formulate a plan for moving forward.

Okay, so enough of my amazement; the results: it's not lupus, it's not scleroderma, it's both, with elements of rheumatoid arthritis as well. Mixed connective tissue disorder, to put a name on it, with prevailing scleroderma. My lungs, well my lungs aren't in great shape. She said we're looking at an autoimmune, inflammatory response that is making my lungs more rigid and the narrowing of my pulmonary arterial vessels which increases the pressure needed to move the blood through my lungs. The two factors combined have cut the amount of oxygen that should be getting into my bloodstream in half. So, we didn't come to any conclusions yesterday, but there are options and both high dose chemotherapy and bone marrow transplant are on the table. She wants me to see a pulmonologist at Thomas Jefferson who specializes in critical lung care in autoimmune diseases and then - get this- they're going to work together to figure out whether things are severe enough to warrant the seriousness, commitment and risks associated with a bone marrow transplant. It's great to have doctors that will be collaborating; as much as my previous doctors have passed on lab reports and office visit summaries to one another, I often feel like a kid passing messages back and forth between divorced parents, and it's aggravating.

So once again the long term plan is blurry and the short term plan is waiting for next month's pulmonologist appointment and increasing the immunosuppressant, azithroprine, that I'm on right now. It's frustrating, but I feel better about it than I did before. I've skipped so many rheumatology appointments because they never gave me any sort of hope, any feeling of progression, or any sense that they we trying to do more than maintaining the status quo. Having doctors that are trying to make things better and are serious about it makes all of the difference. I walk out of the building with a sense of hope and peace and it makes all the difference.

Quick Updates

I have a migraine, so I'll keep it short.

Saw the dermatologist and she's awesome.  Very thorough, very personable, very informative, and didn't make me feel like an idiot.  She says it's not vasculitis, but telangiectasia, what I thought it was initially and a definite indicator that the beast I'm battling in scleroderma.  

There are five diagnostic criteria for what used to be called CREST Syndrome, but is now referred to as limited systemic scleroderma: Calcinosis, Raynaud's, Esophageal dysmotility, Sclerodactyly, and Telangiectasia.  You have to have three out of five for a diagnosis, I have three and a half, no calcinosis and very mild sclerodactyly.  So pending my blood tests results, which I'll get on Wednesday, I should have a diagnosis this week.  

I also got my first disability payment on Friday, which was a huge help, though I didn't get the back pay that I was expecting and I'm going to consult a lawyer about changing the onset-of-disability date.  It's nice to be a contributing member of the household again though.

We spent the day at my dad's today.  We made ice cream with the little man's new ice cream maker/ball.  BF made a great custard and then the kids rolled the ball around for a while and we got to have yummy Burnt Sugar Ice Cream (the sugar is caramelized to just-short of burnt).  We watched the Eagle's game, which was, as usual, a nail biter until the very end, but they won and there will be a game next week, so it ended on an up note.  BF, my brother, two of my step-brothers and I played Risk (BF kicked our butts, but we all held our own for a while) and Killer Bunnies, a great card game (especially when I'm the winner).  It was a really fun night.  

Bella is getting huge, chewing on everything, especially her hands, turning toward voices and her name, and deliberately grasping and pulling objects.  It's so great to get to see her every week and see all of the advances that she makes.  She's far less fussy now and she has a great smile.  I can't see her without hoping that I'll be lucky enough to be able to have one of my own.  Really I'd like two or three more, but BF definitely doesn't and I don't want more than my body could keep up with.  So I'm pretty sure that if we can have any, whether I can physically carry them or not, we'll only be having one.

Wow.  So much for short.  But the last hour and some migraine meds have actually made a major dent in my migraine and I can stand to look at the screen.  Think I'll go work on my book now.  It's the last in a the four book Outlander series by Diana Gabaldon.  It's somewhere between a historical fiction and a romance, but more to the historical fiction side, and being the history geek that I am, these thousand-plus page tomes are right up my alley.  

Success!

My brother gave me a ride to get a chest CT this evening.  When we were about four blocks away from being back at my apartment, BF called and told me that I needed to get home right away; there were two envelopes for me from the Social Security Administration and he was desperate to know what was in them.

These people have kept me in this horrible limbo for what seems like an eternity now.  Six and a half months of not knowing what I was going to do about my rapidly deteriorating financial situation.  My car insurance lapsed and I haven't been driving my car for months now, I've filed for several student loan deferrals on the basis of unemployment, and I've been making my minimum monthly credit card payments with the money I got as graduation gifts, which is now down to about $15.  Luckily I have BF, who has been keeping me warm, fed, and under a roof, but our financial situation has been tight to say the least, especially since I lost my student health care and he put me on his plan through work.  

So I let BF open them and he read them to me over the phone.  One was unimportant, but the second letter stated that I had met the medical criteria for disability benefits.  It felt like taking off a lead sweater.  I don't think a day has gone by since May that I didn't have to face the anxiety of not knowing.  It's been a constant low grumbling in the pit of my stomach.  Just not knowing.  What if they denied me?  What if I had to appeal the ruling and spent the next year fighting with the SSA?  What would I do if it ended badly?  All of those questions never quit their nagging.  I feel lighter, giddy.  

It certainly isn't a windfall, the most I've ever made in a year was about $17k and that was one year, by far not the average.  I'll be collecting less than a thousand dollars a month, but that makes all of the difference in my life right now.  With the eight to nine months of back-benefits that I'll be receiving when I start collecting (paper work, payment setup, and administrative BS all stand between me and my first check) I'll be able to pay off all of the credit card debt that I've racked up in the last year and a half and get my car back on the road.  And the payments will be enough that I can pay all of my monthly bills without having to lean on BF quite so much.  

Sigh.  

How supremely awesome.

I also have a couple of big doctors appointments coming up in the next few weeks.  Today I had a high resolution chest CT and they gave me a disk with the images, which, while I can't determine their precise reading, are very cool for the girl who wanted to go to med school.  Tomorrow, I take those images and my medical history to a new dermatologist who will be evaluating me for an autoimmune vasculitis.  I'm pretty damn sure that it's going to require more blood tests and a lung biopsy before I have any answers, but it feels good to be taking that first step.  Then next week, I go to see my new rheumatologist again with the results of the massive panel of blood work that she ordered that will tell us which autoantibodies are floating around in me, the radiologist's report on today's CT, and my pulmonary function tests.  Hopefully all of this blood, radiation, and heavy breathing will give her a more clear picture of what's wrong with me.  Then, the following week I see my pulmonologist again and we will once again assess the stage that my pulmonary hypertension is at and what rate it's progressing at.  I wish I could say that with luck things would be looking better by February, but that isn't what I'm expecting or even really looking for at this point.  I just want to be able to confidently put a name on this mysterious convoluted mess of symptoms that I have.  I don't know if you can appreciate the need to know what it is that you have when things are going wrong left and right unless you've experienced it.  The nearest thing I can compare it to is after finals and before you know your grades when that final was the difference between an A and a C.  The scale is still far broader when your dealing with four or five potential diagnoses, each with different treatment options, life spans, mortality rates, and generally run the spectrum for quality of life and possibility of a cure, but, like I said, that's the nearest that I can come.  You just want to know what the future might hold, no matter what the answer.  The powerlessness sucks, but when you know you can take back a little of that powder, by doing further testing, start doing research, exploring your options, taking new medication, it all makes it feel just a little less chaotic, a little less horrifying than when you have no power except to wait.

So I know a lot more today and I'll know a little more tomorrow and by February I should know a lot more and every new piece of knowledge feels like a victory in and of itself.