Not Too Bad...

So things are looking up again.  My mood is better and that really makes a whole lot of difference for everything about my world.  Nothing has fundamentally changed, I'm still waiting on an antidepressant, though I'm self-medicating and I bumped my Wellbutrin SR and Zoloft up to levels that are actually therapeutic, so I guess that probably has something to do with it.  I see my new psychologist first thing next week and I'm actually pretty excited about seeing her.  Not only does she specialize in working with people with chronic and terminal illnesses and their families, but she primarily uses cognitive behavioral therapy, which everyone seems to agree would be really good for me.  I'm looking to actively being involved in a more hands-on process to try and change the way I look at and handle this stuff.  I love self-reflection and my last therapist (an MSW) didn't seem to be doing anything but listening to me bitch and commenting; she didn't even make suggestions about how I should be changing anything or reframing it...not very helpful.

I also finished the two "self-help" books that I was reading, one from the patient's perspective, one from the caretaker's.  I found both to be really illuminating.  It's nice to know that this is hard - really hard - for everyone who has to live with it and that everyone deals with it differently.  It's nice to not feel so alone, so isolated, as if I'm the only person dealing with a scary diagnosis that isn't handling it perfectly.  Now I can see that no one handles it perfectly and that it's a process and a process that I won't just go through once and have it down right.   I also went to my first PH support group on Saturday.  It was great.  BF, my dad, and A., my step-mom came with me and even though there wasn't anyone there who was even close to my age (except for the nurse advocate who's an expert on PH and goes there to answer general medical questions and help out wherever she can without giving any specific medical advice) I found that I could still relate to everyone there, even though most were twice my age.  It was good for me and hopefully for my family to hear the struggles that these women still go through and I'm sure it was good for BF to hear from some of their husbands who care for them.

My health still isn't great, but I don't know if it'll ever be great.  My breathing is better, I haven't been needing the oxygen nearly as much, but my back was terrible last week from my hips all the way up to my shoulders and then when I thought the back pain was getting better I started having chest pain.  It's a weird pain, sometimes it's sharp, sometimes it's diffuse, and it moves around a lot.  I don't see my pulmonologist again for another month, but I'm going to ask my rheumatologist about it when I see her next week.  I'm hoping that she'll have some answers for me at this visit; the last time I saw her she didn't have all of the data from the tests they did at the hospital and she wanted a slew of new blood work done so that she can make a decision about putting me on a cytoxic agent if I have interstitial lung disease.  Doesn't thrill me, but if the drugs I'm on now aren't doing a good job of keeping my autoimmune system under wraps then I guess I'll just have to suck it up and take the chemo. 

On an unrelated and totally positive note, A. is in her last month of pregnancy now and soon I'll have a little brother or sister to be elated about.  I really can't wait, I feel like a little kid.  It's just going to be nice to have something this positive happen for all of us after all of this crap.  And I've never had a baby around, let alone had this easy access to it!  And I think that just maybe it'll be what BF needs to see to agree that I'm capable of taking care of a baby, that my illness wouldn't leave it all on his shoulders if we went with a surrogate and had one of our own.  Wishful thinking probably, but I can hope, right?

Anyone Have a Loaner Body I Could Use?

I hate back pain.  Foot pain I can limp through, migraines I can ignore (to an extent), and any other pain I can just grin and bear.

My back has been one giant mess, pain from shoulders to hips, for about five days now.  I'm trying to get in to see a new chiropractor to get some relief because even though I have autoimmunological, muscular, and neurological issues that are causing me pain, a lot of what I experience in my back and hips is structural.  One leg is shorter than the other, that twists my pelvis and throws my hips out of line, and I have four vertebrae in my spine, lumbar and cervical, that just tend to pop slightly out of place and misalign everything else.  And though I can write all this crap down, there's little I can do about it besides gobble down pain killers every four hours and alternate my heating pad between top and bottom.  

Hopefully the new chiropractor will squeeze me in sometime tomorrow, so that I don't have to wait until they're back in the office on Friday.  That would suck.  Not that I have anything exciting planned, but I was hoping to be able to leave the house and this makes getting in and out of the car or walking just about any distance really really difficult and driving and darvocet don't mix and I hate being trapped here.

No Matter What! I'm going to my mom's tomorrow to have her help me dye my hair blonde.  I've been talking about it since before the hospital stint and I'm determined to get it done.  I've never been one to stick with a hair color for too long.  It's been several shades of red, blonde, brown, black, purple, and a weird combination of red, blonde, and black all at once.  It was fun to be a teenager.  Once I get this certification/employment situation figured out, if it goes my way, I'll have an online job and the freedoms that go with those, such as not having to have a hair color that could be someone's natural color, and my lovely locks will be purple once again.  I can't wait.

Oh and I never made it to church on Sunday due to my evil back, but I'm going to try my hardest to get there next week.  BF has even said that I can take the little guy along to see if he is into the children's program that they have there after I promised that it was entirely benign, arts & crafts, no Jesus.  Wouldn't want to step on either bio. parent's spiritual beliefs.

I've been feeling better on the whole lately.  Less depressed, less exhausted, no need for oxygen.  I've had some issues with chest pain, which I still haven't talked to my doctor about, but I'm under the impression that chest pain is a normal symptom of PH that some (if few) patients experience.  I could be wrong, something could be terribly wrong warranting a consultation with the doc, as BF and my mom seem to think, but nothing else seems to be wrong related to that so I'm just going to let it go for now.  

I've been reading "Life Disrupted" and "Beyond Chaos", both about relating to and as someone with a chronic illness and giving me insight into the other side, the significant others feelings.  I'm hoping that after BF reads them that we'll be able to talk about our situation some more and that I'll feel more comfortable with it.  I wish I weren't such a worrier, but I am.  I need to know that he knows what he's getting into, what I need from him now, what I may very well need from him in the future, what it is like to be me, what our life together might be like.  I don't want to let illness overtake my life, but I feel like the sooner we deal with these issues and have our "plan" in place, even if its a plan that says that all of our normal plans can and may be scattered, then we'll be better prepared, I'll be more comfortable, and it will be easier to move past this dead zone that has come down around us.   I know that I still have plenty of issues to deal with after that, the least of which is what the hell are we going to do when I run out of money from my student loans sometime in the next month or two and have no income, but there really isn't anything I can do about that one except apply for more stupid part time  clerical jobs, which is what I'm doing.  So yeah.   

Stagnation is THE most boring nation.

Our couch is soon going to have a permanent groove in it where my ass has been, day in and day out for the last two months.  I try to keep a happy face on about this.  Try to downplay how depressing it is to be me right now.  Not just downplay how depressed I am, but really to not think about all of the things that I loathe about myself and the way I live right now.  

I have no job or prospects.  I have a degree that I cannot now and may never be able to use.  I have no friends outside of BF and my immediate family.  I don't have anything to talk about besides my medical situation, and that's gonna make it hard to make any friends in real life.  Friends I can go out and have coffee with or see a movie or just sit around the house and talk to.  But I have nothing to talk about.  I have no hobbies.  No interests besides sucking down books at a more rapid pace than I ever have in my life.  I don't have a reason to leave the house unless I have a doctors appointment or a test, or BF needs to go somewhere, or I'm going to one of my parents' houses.  I'm twenty-four years old and my parents have become my only social outlet.  I love them and love spending time with them, but I long so much for someone that I can relate to.  I just have so much trouble making friends in the first place and all the friends I have acquired previously have either abandoned our friendships or moved away.  

Having nothing to look forward to in your life on a regular basis is definitely not the way to crawl out from under depression.  But up until now I just couldn't deal with that part of it.  My antidepressant still hasn't been okayed by my insurance company; my therapist double-booked my last appointment and was late on top of it so I left; my psychiatrist is on vacation for the whole month of August and apparently that started a week early; their receptionist is a rude bitch - hence I'm looking for some new mental health professionals.  But in the meantime, I've finally gotten to the point where I still feel like shit, but I don't feel like breaking down into tears every time I or someone else say the wrong thing and the pregnant mannequins don't make me want to punch them quite so much these days.  So I think I've progressed to the point that I could make some friends and get out of the house from time to time.  

The problem is, I don't know how to make new friends; you know the ones that actually stick around, the kind of friends I need right now.  I'm not looking for a counselor or a comforter or someone to bitch to, on the contrary I'm looking for someone that I can talk to about anything but PAH, SLE, MCTD, FMS or any of the other stupid fucking acronyms crowding my life and my head.  And most of all I need someone that can at least try to understand that my rescheduling and canceling at the last minute and not always being so chatty because there's a stabbing pain somewhere in my body is not any reflection on how I feel about their friendship.  It's a hard thing to get, I know that - it's why I don't have friends now.

So I've settled on driving the fifteen minutes it takes to get from here to the nearest Unitarian Church tomorrow.  I don't expect miracles (pardon the pun).  I just hope that I can find myself again while finding a community for that self.  I'm not religious; in fact I hate religious doctrine with a fervor.  That's what appeals to me about this church.  They welcome everyone from Christians to Buddhists to Atheists with open arms and the sermons are focused learning about life and how to live the best life that we can.  That works for me.  Maybe I'll find some friends, maybe I won't and I'll just find something uplifting to do once a week.  Maybe it will help heal this hole in my chest that I just can't seem to fill.  I'm lost.  I had a dream and a path and in one day I was knocked completely from it; everything changed.  Now I feel like I don't know who I am, where I'm going, or even what I want to do.  I've seen the power that churches can have to bring a life back from desperation and despair, all signs seem to point to me needing to seek out some kind of spiritual guidance.  It's also been my experience that people who devote their time to the church and who actively seek out the church that fits them are the kind of compassionate, thoughtful, liberal, interesting people that I'd like to become friends with.  So I'll try to kill two birds with one church.

Hey maybe I can even find someone there who can get me a job! :)

The Day After.

Well, the party went off without a hitch.  It really was very nice to see everyone I wanted to see and to get a break from this daily crap that I've been living with lately.  I looked awesome (if I do say so myself).  My mom ordered and made far too much food, so we won't be cooking for a week and I don't think that any of our guests will either.  And the decorations came out awesome as well.  We had so little time to set up, but everyone pitched in and we made that place look great.  My dad's new wife brought me the decorations that they had used at their wedding (not many as the spot had real beauty unto itself), so we had great big white japanese lanterns and tulle and ribbon and such.  I got lots of compliments on how well the spread turned out.  

All of my mom's side of the family showed up and it was great to see them all.  Much to my dismay, none of my dad's side came, including my grandmother, which is really disappointing; I used to be her favorite, but she and my aunt had a falling out with my dad about a year ago and things just haven't been the same since.  None of my old friends came, which was really disappointing, but also gave a sense of closure to those relationships.  They had been becoming more and more distant for the last few years and none of them came to visit when I was in the hospital, so it's kind of settled.   No hard feelings, just dissolution.  And I got to see some of my old friends from work that still work with BF, that I'd been longing to see again, but couldn't go to the office or anything, so I really enjoyed seeing them.  And there's also a group of friends that my parents grew up with; they were all teenagers and then young parents, and then divorcee's together, but to me they've all just been like surrogate aunts and uncles, so having a graduation party without them would just have seemed wrong, even though I haven't seen a few in quite a while.

Oh and I actually worked up the courage to put my legs through the torture of high heels for the first time!  Exciting considering I'm already twenty-four.  I just never had the inspiration or the right dress or the opportunity to take them off as soon as they started making my knees collapse on themselves.  So, yeah, exciting.  

The food was great.  Just sandwiches and cold salads, but they were gourmet sandwiches on artisan breads and they were really divine and my mom's boyfriend is a trained chef and makes the most divine potato salad in the world, and BF made my favorite chicken salad.  And my wonderful new step-mom and my dad bought the cake.  Now I was expecting a sheet cake with some red roses and "Congratulations Rachel" written on it, but I got far more.  When my step-mother went to the bakery to get the cake, she happened to be helped by non other than the owner.  They got to talking about why we would be having a graduation party so late in the summer and after hearing the story, this wonderful woman offered to do the artwork on the cake as a gift to me.  So instead of a sheet cake, I got a beautiful, two-tiered black and white paisley patterned cake with a great big red fondant bow on top of it.  I was blown away as were all of my guests.  I'm definitely going to stop in to thank her personally and I will certainly remember them when it comes time to do a wedding cake.  

My wonderful parents, well my dad really because my mom would've gotten all choked up, gave a beautiful speech about how proud they are of me and how big an accomplishment this is and all the adversity, yada ya, and my insatiable love of learning, yada ya.   It was really hard not to cry and really touching.  I hear bits and pieces of how proud my dad is of me from various people I run into that he's told of my various accomplishments, but I rarely get to hear it straight from his mouth  (I get lots of really great hugs though).  It was great to have them both there and to be able to share this all with them and be able to see how proud they really are of me.  After all, I've busted my butt for this degree.  I was diagnosed with lupus a full year and a half before I started college and even when I got sick I either worked through it or got right back to school as soon as I was well and I kept damn good grades right on through everything.  And my dad was right.  I do love to learn.  I always have and I hopefully always will.  

Some parts of the evening were tougher than others.  I had to talk (a lot) about what's going on with my health, how I'm feeling, what I've been doing, what drugs I'm on, what comes next.  But everyone's concerns were genuine and I got some good perspective and some good advice.  My new step-grandfather (I hate all of these step- names by the way, these people have felt like and acted like family from day one, but I'll be damned if I can think of another way to differentiate among the many family members in my life) is also a Temple alum, and was an education major at that.  He went on to be a social worked and runs an incredible counseling center, which incidentally is also what my step-mom does, she just got her M.S.W. last year and has just started counseling kids and families.  Anyway, he is going to get in touch with some of his contacts at Temple and elsewhere and see if we can't get this little matter of PA Certification cleared up so that I can teach.  Which would be awesome.  

So lots of food, lots of friends, lots of fun.  It was a great night and it ended with a fuzzy headed three-year old (who everyone is amazed by) curled up in my lap, playing with my bracelets, making me feel like the luckiest person on Earth.  All in all it was the best evening I've had in a long time.

Today - not so great.  We came home last night and I lay down on the couch wishing that there was something that I could do to make every muscle in my body stop aching so badly, but there wasn't and eventually I passed out.  My sats kept dipping into the eighties today, so I stayed tethered to the O2 pretty much all day and just rested.  But I knew that that was the price I would have to pay and if I had it to do over again, I wouldn't change a thing.

I want as many days like that as I can fit in and hopefully while I'm busy fitting them in, they'll cure these damned autoimmune suckers and I'll be joyously left with one hell of a wonderfully full life.

Party!

My graduation party is tonight, after having to be postponed by two months.  I'm not expecting nearly the turnout as we expected for the first one; having a party on a Saturday in July almost guarantees that half of your invitees will either be on vacation or have other plans of some sort.  But it will be nicer this way.  I invited 120 people to the first and was expecting 80.  This time we're expecting maybe 50.  

So everything is falling into place.  The foods made.  BF and I spent the night hanging out and cooking desserts and salads at my mom's place last night.  It was a really good time.  I also got treated to a manicure with my step-mom and step-sister yesterday afternoon, which was very nice.  We've been loafing around the house all day today.  BF made his awesome chicken salad for the party, but that's the extent of the productivity here.  I'm in the process of doing my hair and makeup and then we're off to my mom's for my dress as the zipper broke and she kept it last night to fix it.  I'm helpless when it comes to sewing.  

So we're going over there and then my whole immediate family is off to the party venue to decorate and setup in the hour before the invitation start time that they're letting us in the place.  It should be an interesting scramble to watch.  BF's going to go to the caterer and pick up all of the food and then the three dozen balloons we have coming.  

I'm really looking forward to this. Well, not really looking forward to it, only sort of looking forward to it.  I just feel like everything has gone so far south lately that it's hard to think of it as a time to celebrate. I have no job or even prospects of a job.  I still feel like crap; the last three days I've been having stupid chest pain and I'm all doped up.  I'm depressed and morbid and pessimistic.  But maybe it's just what I need; lots of friends and family, some music, some conversation, to look my best.  Celebration, even if it feels unwarranted, may just make me feel like it's warranted.

Busy week.  Very busy week in fact.

My graduation party is this weekend and well, I'm neurotic, so I go a little crazy when there's lots of planning and budgeting and such to do.  I also don't have a wedding to plan yet and I refuse to have "Class of 2008" sprawled across everything, so I've been a bit obsessive about getting the tables set just right.  This was fabulous fun for BF I'm sure as I drug him to the craft store twice last weekend and talked his ear off about all of the different ideas that I had.  Things have come together beautifully though.  I have foot high hurricane vases with red flowers arranged inside ready to be filled with water and capped with floating candles (which are exactly the perfect size), four dozen votive holders that I wrapped with red, black, and white polka dot ribbon, plain white plastic table cloths and black filigree decals which will hopefully make them better.  And I'm leaving the decoration of the rest of the room to my mother.  We've agreed on black flatware and plates and balloons and streamers in coordinating colors.  On the whole I think it's going to look great, as long as I can keep the fluorescent lights low enough to not destroy the candlelight.

And I, of course, will be stunning.  Tongue in cheek of course.  I gained 15 pounds during those 16 days in the hospital (all you do is eat and sleep!), my feet and ankles are puffy with mild edema, and the prednisone has given me a nice round puffy face, it has completely cleared my dermatitis though, so that's nice.  But I've done all I can to subvert the effects of my health with an awesome black and white, knee length halter dress, patent leather, round-toe pumps, fishnets (to hide the awful bruises that the blood thinners have made a permanent feature), and some cute new jewelry.  On the whole I think that it's going to be a fun night, though it feels rather odd to be having a party two months after I graduated (technically) and with so little that I feel I have to celebrate.  But I guess that we can celebrate the simple fact that I earned the degree, whether or not I can actually use it.

I heard from a friend in Iraq today, and no, he's not Iraqi.  He's been over there for more than a year now and it's always so bittersweet to hear from him.  He's a very good friend, probably my best non-girlfriend.  Fiercely smart and witty, good looking to boot.  He was supposed to join the Navy as part of their nuclear submarine program, which is the most selective and academically rigorous program in the armed forces.  After more than a year of jerking around by his recruiter, he finally found out that they wouldn't take him because he'd been on an anti-depressant for a short time in high school.  He was not only pissed at having all of his hopes blasted, but was just the kind of hot headed kid to say "fuck it" and spend the next few years doing as little as possible.  So he finally decided to get himself some discipline and responsibility and money and joined the Army.  I thought he was such an idiot for making a choice like that while we were actually at war, and I still hold to that one, but it's still been the best thing he ever did for his life.  And he's relatively safe.  His little group (whatever they're called) are essentially sitting around making sure that a controlled area doesn't fall back into hostility.  He's in no immediate danger and as of his email today, he should be home on leave next month and home for good before Halloween, so I only have to worry about him for a little while longer.  He always makes me cry though, not for where he is or how much I miss him, but because he always sounds more concerned for me than for himself and always manages to say just the right thing.  His mom has had fibromyalgia for years, so he understands what living with chronic pain actually entails.  It's nice to have someone like that in my life; someone who isn't dealing with this shit for the first time.  

I miss him.

Disappointing Small Children is My Forte

Oh so I feel like just about the smartest person ever right now.  

Last month when my mom and I went to see Ani DiFranco at the Mann Music Center we picked up a flyer that was advertising their free young people's concerts.  The two that looked appealing were in July 14 and July 28; fun, music, kids, free.

So when my cousin, who has a brood of her own including an adorable four year old little girl, got in touch with me over Facebook last week I invited her and whatever kids wanted to come to join Jake and I on our adventure to the city.  My cousin and I have been steadily drifting further apart for about ten years or so, but my little life here has made our goings on much more similar and we're trying to restart an old friendship.  I really like her, she's easy going and sweet and has an incredible laugh.

Anyway, she emailed me last night to confirm and just said to call her in the AM.  Of course this was wonderful because my stolen cell phone has her number on it.  But it turns out that that doesn't matter, because in my insomniac state I checked their website One More Time, just to make sure that we were headed to the right place and all of that and lo and behold I notice that the date on my calendar does not read 28, but 21 instead.  I instantly shot her an email apologizing and seeing if she'd still be up for it next week...God I hope she checks her email or calls me before she leaves the house!  She's got five little ones that I think would be with her, maybe four, and I know what a pain in the butt it can be just to get my one packed and out the door and in the car.  So let's all hope that this works out for everyone.  

And then there's me.  It's now 6 am and I haven't slept a bit.  I'm drugged as hell.  Sleeping pills do odd things when they don't put you to sleep.  But soon the pills will have worn off and then where will I be?  Finger painting with a three year old on a great big mat on the floor, trying to not fall into the yellow and desperately awaiting Nap Time.

Oh and a note on the little man!  After several months of change from diaper to pull-up, months that he just wasn't into the toilet training deal; he's finally on board.  He's been using it regularly, with the occasional slip up her or there for a few weeks now.  It's great!  I can't even explain how great!  Those of you without children are I'm sure saying to yourselves that I'm mad to be so happy over something like this, but as the people with kids will tell you, cleaning up someone else's poop sucks.  He woke up dry this morning and from his nap.  I was amazed, it was a first time thing and we made a big fuss.

Okay, that's it for me I guess.  Time to try to sleep again before it becomes totally impossible.

Finally Giving In...

When I was diagnosed with lupus I was still in high school and while  it caused me some pain, I always managed to keep a job. Well I say always, it was only nine months after I finished high school, when I had started college full time and was working as an administrative assistant and hostess part time, that I had my pulmonary emboli and my first real lupus flare. 

It knocked me off my ass. 

I had no idea that it could be that bad. I quit my jobs and dropped out of school as I had missed far too much to make it up and was in too much pain to go to class. It sucked. I didn't know what to do with myself; I was depressed and I felt useless. I spent my time sitting on my mother's couch watching TV. She was understanding and tried very hard to make my life better, easier, not so shitty.

Six months later my boyfriend asked me to move in with him and into a friend's house with a bunch of roommates. He understood that I was sick, but I don't think he understood how sick I was. I spent all of my time in our bedroom, in bed, watching TV, having friends over, smoking lots of pot. I was constantly nauseous and ate nothing but turkey and cheese sandwiches on white bread.  Nothing else would stay down.  I lost sixty pounds that year.  My boyfriend also got that I wasn't able to work and was okay with supporting us...sort of.  We had to move back in with his parents three months into our little domestic experiment because although he brought home twice the rent in one week, he also spent all of it on pot and various other illegal substances.  So, I relocated my staying in bed watching TV routine to his parents house and we continued on that way for another four months or so.

That was when my flare finally let up.  I found the right doctor and the right combination of pills and suddenly I was a (semi) normal person again.  I found myself a job that was flexible with my hours and understanding that I was still sick and still had bad days.  I had tons of sick time and they let me take personal days, vacation days, and sick days whenever I needed it.  Also, being an administrative assistant isn't very physically demanding anyway.  I bought a car and made plans to go back to school in the fall.  It was all very rash and I didn't take light steps, I just jumped in and didn't worry about how I might feel in a few months.  It was good that I did because that not-so-sick period lasted for two and a half years.

Ironically, just as things were looking up in the health department, my relationship was falling apart.  I was realizing that I wanted more than to sit around and watch TV and smoke pot.  My boyfriend lost his job because he was an idiot and had to take a part time job making a paltry salary.  Suddenly I was the head of the household and he was just partying all the time.  No good.  He wanted to be twenty one and have no real responsibility.  I wanted to start a life, to have a nice apartment, not to have some guy sleeping on the couch everyday because they were up all night the night before.  Not to live in a party house.  

So I moved back into my mom's and we remained friends.  The Fall '04 semester I started school again and dove into my studies, keeping a 4.0 while working 35 hours a week.  I was feeling okay, achy, but still able to pull it all off.  I graduated with my Associates in 2006 and started at Temple University the following semester.  I also moved in with BF that August.  And was fired from my great, flexible job at the end of September.  It wasn't working out for either me or the company; the job had grown to be too big for a part timer and I couldn't work any more hours.  Luckily unemployment made up the difference, because I was making crap to begin with and when you take away a third of a crappy income and your boyfriend makes more than three times what you did, it doesn't matter so much.  So, I just took it as two semesters of hard concentration on my schoolwork and keeping a nice house. Which I did for about three months.

The 'keeping house' bit ended that January, when the baby got a stomach virus.  Now I know I've mentioned him bringing things home before an let me just be clear, I understand that kids will always bring things home, especially daycare kids, and I don't harbor anykind of resentment that he gets me sick.  I could not kiss and hug him and give him sips of my soda, but that would just be awful.  

So anyway, we all got the stomach bug.  BF was over it in two days, the little man got over it in a couple weeks and three months later I finally shook off the last of it.  Those three months were awful. Any massive immune response like that kicks my autoimmune system into overdrive too and my lupus flares like crazy.  I was sick.  Sick as hell.  I had trouble just holding my school schedule together, but I did it (and kept that 4.0).  It sucked.  I was just starting out in the greatest relationship of my life; I had been fun and sexy and happy and then suddenly I was having trouble just moving around.  What a let down for him!

That flare still hasn't ended and it seems to have kicked the fibromyalgia into serious action.  This time I've gained forty pounds instead of losing weight; I needed to gain weight (I looked sickly thin at 110 pounds, even on my little 5'4" frame), but I would've been happier with twenty pounds.  I tried to work last summer.  I had a job from May through late September.  I soon found that I had no time or energy for BF or the little man or anything but school and work, and I was doing a bad job at both of those too.  So I quit.  School was more important as I was just a year from a degree.

The degree part worked out.  But there's no career to go along with it.  

I couldn't get state certified because I couldn't keep up with the forty+ hours a week student teaching job that was required.  I thought that I could get a job at an online high school, as new ones are popping up everyday, but though they're not public schools, which have to hire state certified teachers, they still want that certificate.  So now I'm stuck.  I can't use the degree that I have to start paying for in six months.  I have a new, very debilitating disease.  I can't take a job back in my old role of administrative assistant because I'm the crappiest employee anyone would want; I'm foggy all morning; I get sick all the time; I miss days; I'm just unreliable.

So I did what I've been avoiding doing since that pulmonary embolus - I finally filed for disability.  Even if I get it I won't be getting enough to really make any difference, but it will help.  I hate it.  I don't want it.  I want a fucking job.  It's incredibly frustrating to feel this useless.  BF is understanding, but still thinks that I need to work, if not for our budget, for my state of mind.  Being in this house all the time is depressing.  It's boring.  It's just bad for everyone; me, him, the little man.  I need to be better.  To be a better girlfriend, to be a better mom, to be a better member of society.  Everyday I feel more isolated and depressed by my surroundings.  I anxiously await BF's arrival from work every evening, his companionship and the days when the little man is here are the only things that keep me from going over the edge.  Ugh.  This wasn't supposed to be quite this depressing.  But I guess going on disability is inherently depressing.  It feels like giving up, giving in.  Deep down I know that I will get better, I will work to get past this.  To fulfill that dream of teaching.  But for now it just sucks.  I just spent an hour filling out a packet detailing everything that I could once do but can't anymore; what I can and can't do; where/how bad/how frequent my pain is; how bad/how frequent my fatigue is.  Give me twelve pages of questions that forced me to detail my life now and compare it to what I once had and I guess I'm bound to be depressed.  

Hopefully the people at the disability office won't deny me and make all of this awful examination of how much my life has changed turn out to be for nothing.

Reflections on (Pseudo-Step) Motherhood

When I first got involved with BF it was all about him…but as I fell more deeply in love with him and it became more clear that our relationship might cause the end of his marriage, I had someone new to think about as well…The little man.
At the time The little man was a baby. He had his first birthday a month before BF and his now ex-wife decided to separate. He was just past fifteen months old when I moved in with them.

During the few months that I spent as The Other Woman I had a lot of time to think about what the consequences of what BF and I were doing would be, for him, for me, for her, and for the little man. An affair like ours is inherently selfish. I knew I was in love, I knew he was in love, and I hoped that she would come out of the other side with a better, more fulfilling life, but being unsure about that wasn’t going to make me stop being involved with him. The one thing that I was concerned about was how a separation, divorce, split up parents, and a stepmother were going to affect the sweet little child who bore no responsibility for any part of the situation. So I did what I always do in times of decision, I read everything I could find. I read books about co-parenting, stepfamilies, the effects of divorce on children, how to have a positive relationship with your spouse’s ex. I read up on what it could be like to be a step-mom, how to build a relationship with your stepchild, toddler development. I was already an education student, so I was in the process of studying child and educational psychology and development. I immersed myself in information. Sometimes it was difficult; there is very little information out there about the effects of divorce on children under five. I felt blind on a lot of issues. I still do. I didn’t know if he was going to bond with
me. I didn’t know how he would consider me. I didn’t have any clue what his feelings toward me would be.

When I moved in with BF I wasn’t apprehensive. Though I had never even changed a diaper and I had only ever even seen the little man face-to-face three times, I felt confident that I could care for a child. After all, I’d always planned to be a mom, I loved his father to death and I wanted more than anything for things to work out for the best. And I succeeded. By the second time that the little man spent with us, I had it down to the point that I could let BF sleep in on Sunday morning while the little man and I had breakfast and played in the living room.

The little man’s Mom wasn’t exactly pleased with my caretaking to begin with. And I completely understand her reaction. She didn’t want some other woman coming in and thinking that she could not only take over her husband and her house, but her child as well. She had no idea about how I felt in the situation, she didn’t know that I understood her sacred place as mother and knew that I could never take that place.

For me the last two years have been bumpy. I’ve been sick beyond what I knew sick was. But that didn’t stop me from building a strong bond with the little man that I now see as my own. No, I’m not his mom in the biological sense of the word and he still has a Mom, who will always be Mom. I will always be Rachel, but that doesn’t make him any less mine.
I just fell naturally into the roll of mom when he was still a baby. And then it was easy. I look back at how very easy it is to direct a one-year old to toys and food and it’s amazing. Because he’s a real little person now. With strong ideas and desires and thoughts and a whole personality of his own. I had to learn everything young parents have to learn and struggle with, discipline, manners, moving to that scary big boy cup. BF and I had to make conscious decisions about what kind of parents we wanted to be, how we were going to work together, how rules were going to be enforced, what those rules would be, and most importantly what kind of person we were trying to shape.

There’s a problem there in that last one though, because it’s not like being a typical parent, there’s a whole other sphere of influence in this child’s life with a whole different set of parenting philosophies and a whole different idea of what kind of child they’re trying to shape, what kind of person they’re working toward him being. I’m a very active parent in that I actively seek out parenting advice: magazines, articles, forums, etc. I read parenting books. I own a copy of Spock. BF and I have a very structured view of what parenting entails and what kind of parents we want to be. My counterpart, the real Mom, the head of the other sphere, has a much less defined view of what parenting entails. She’s not one for parenting magazines or books or going with what the experts think are the best ways to raise a child. She goes more from the gut, from experience, from how she was raised. I won’t criticize her parenting philosophies, or lack thereof, but they are far different from how we do things in our home. This creates some problems. Problems like inconsistent methods of potty training, problems like hearing the words “But Mommy said that I could…” a thousand times a day, problems like our differing views on how important naps are. It’s frustrating. Especially as I’ve grown to love this little boy and he’s grown to love me and I’ve become much more attached to his happiness and well-being. She has every right to parent her own way, and she will; it’s just hard to manage the differences sometimes. It’s hard to get a three year old to understand that there are two sets of rules and not have him melt down every time I tell him he can’t do something that his Mom would allow.

I hope that that part gets easier as he gets older, that he will just understand that there are just differences between our two households and we both have different visions of what a parent’s function is and what the boundaries are and that that’s just how it is. Of course I hate that. I wish we could all come to a consensus on what the boundaries are, so that he wouldn’t have to meltdown when I take my computer power cord out of his hand, because he’s allowed to play with Mom’s. But I suppose he’ll adapt, get used to it,

And it’s hard to parent a child that you don’t really get to make full-fledged parenting decisions about because we don’t have conference calls when issues come up, Mom and Dad talk, occasionally I’m consulted, but usually I’m not, decisions are made and there is a whole world of discussion about his life that I’m never part of. It’s really hard sometimes to not scream when I’m told that yet another decision about drop off times, or a change of days has been made without me. It’s even frustrating when I bring up something that I think needs to be addressed to BF and he goes and has the conversation with her about it and comes back with a positive result. Just not being part of the process is frustrating. But we all talked about the blended family concept when things initially hit the fan and I have hope that we will get there, hopefully sooner than later.
It’s odd to be here at twenty-four. I was very vigilant about not getting pregnant for the last decade and now I have a three-year-old half the time and I can’t get pregnant. Just as I’m really feeling like I’m coming into my own and that I could really do a good job with this mom thing, I discover that I can’t have a baby of my own. Not that I won’t be a Mom, mind you, that dream isn’t going anywhere. But to be pregnant, to have that intimate physical bond with someone, to know that they came from you…I’ll just never know what that feels like.

And no, that is not okay with me right now. Right now it feels like someone has ripped my uterus out and stomped on it while laughing in my face. Right now I’m pissed off and sad and disappointed. But every week I see his little shining face. That sweet grin. Those adorable eyes. He reminds me that I have so much already. That if there are no more children, I’ll still get to share an intimate part in the life of this golden little boy. Not the Mom part, but the Rachel part. And that’s pretty damn special

So those are my thoughts on being a pseudo-step mom up until now. I’m sure there will be more as I become more seasoned, but for the time being I think that probably plenty.

I’m absolutely in love with both of the men in my life. They are my family. I wouldn’t give any of it up for anything.

Down.

I know I must seem rather up and down these days. Probably because I am. Mostly down. It's not always glaringly obvious. I'm not curled up in a ball in my bed. I'm living life, just not well. It really doesn't help that I didn't get to see a psychiatrist until the end of June and that I still haven't gotten authorization from my insurance company for my new antidepressant, thanks to a pharmacy that didn't notify my doctor's office that they needed to authorize it until Last Thursday. Are they trying to drive me crazy?

The hardest part is the variety of negative emotions that I'm feeling here. There's sad. Sad just sort of lies over everything when you're depressed though. Sometimes it's the primary player. Like the jarring sad that hit me as I walked around the mall tonight and saw all of the big pregnant women in tee shirts that looked like they were working ever so hard to stay wrapped around those plump bellies. Like the sad that forced me to look away and bite my lip after I made the unconsciously bad joke that the little man had about as much chance of getting car insurance that I did of getting life insurance. Ow. That one hurt. And I did it myself! Sometimes I forget that it's still too raw for sarcasm...It may always be. But I'm a sarcastic ass who's in love with another, so I doubt that even while we're careful sad will not be here to stay. Hopefully it won't always feel like such a punch in the gut.

Anger is the other major player in my little depression here. Anger without focus. Anger at a situation. And how can you be adequately angry at a situation that no one else caused. There is no one to scream at, no one to blame for all that I've lost. Even at best this disease will just shorten my life by a decade or so and prevent me from having children (without taking a more than 50% chance that it'll kill me). There is no scenario here where I go into remission and live on into old age. Lupus always had that hope - I could live with it as long as anyone else might live; I could have children, even though it would be high risk; I would be able to pursue the activities that I enjoy, the things that I love; I would always have to be medically aware and careful to take care of myself, but it was nothing like this. This rips away giant pieces of what I wanted for my life, this will rip away my life itself. If that wouldn't make you angry, you're a saint.

But then there's the frustration that comes of the anger. The frustration at having no where to direct it. Being angry at a disease is quite possible, but there's no fulfillment, no end to the anger because you've gotten your point across or ended the situation or hurt that which was angering you. I feel like my hands are bound and my mouth is taped. Because apart from the frustration of not being able to focus my anger on something tangible, I also frustrate myself by restraining what I show to the outside world. Putting on a happy face. Acting normal. Going through the motions. I feel like an asshole for doing it and it frustrates me endlessly. But what option do I have? Can I really tell all of them when they ask how I'm doing? BF seems to be the only one who sees through my facade and I love him for it. But I don't want everyone in my life to worry, I don't want their lives to be changed because of my depression, I don't want it to reach out any further than myself.

And that's where frustration turns to guilt. Guilt that my mom and dad have to deal with this. Guilt that my brother no longer greets me with raucous humor, but instead asks how I'm feeling with a genuine air of concern in his usually carefree voice. Guilt that BF is too in love with me to leave and have the full life that he deserves. Guilt that I will someday leave him. Guilt that I lie with that happy face and tell them that I'm doing alright. Guilt that I still want to find a way to have a baby (should my health hold up) that I leave behind very very prematurely. Guilt that I'm not big enough to just be the best step mom to the little man that I can be and be happy with that. Guilt that I can't just dream of being the great aunt. Selfish. Guilt for putting BF in a situation where he could be a widower with a young child. For asking that he take that risk. Guilt for feeling guilty for all of this. Sad for feeling guilty.

I'm not looking for pity. Pity is the last thing that I want. Maybe this was just for a bit of understanding. Maybe this was just to vent. Maybe this was just the end of a long, depressing day following a whole bunch of depressing days and I couldn't keep it to myself anymore. I'm sick of weeping. Sick of choking back tears. I won't cry though either. If I start to cry I just feel more frustrated and angry and guilty that BF has to be the one to deal with a woman who is sobbing over lost dreams that he shared. Sad and Guilty and Selfish and Angry and Frustrated that he's not sobbing too. The sobbing never lasts long and doesn't happen often because I find self pity so damned repulsive that I've soon talked myself out of sobbing and just lay quietly, a heaving mess, trying to catch the air in lungs that are now my enemy.