Oh the Beach...

First off, a weekend down the Jersey shore is not enough.  Four days, five nights. Perfect.  Unfortunately our custody arrangement and of course the fact that someone in this house needs to be employed makes it a little hard to do that one.

I had an insane day trying to get things done and together before we left.  Little man has an infected finger (which I believe I mentioned before, but am not going back to read) so we picked him up Thursday night so that I could take him to the doctor on Friday.  That was fine, very little adventure involved; he was his usual well-behaved self and now we have pink-stuff to take three times a day.  But it took far longer than I anticipated (I under anticipate the time that is involved in doing nearly everything) so we were a bit rushed already when we stopped in the shop at the mall to get the little man a haircut.  It was as necessary as the doctors visit, the boy looked like a Beatle.  So we got a buzz on number six and hauled our butt to my moms so that he could nap while I went to my doctors appointment.  She's awesome like that.

I went to see my Rheumatologist, and I don't know if anyone else find this offensive or not, but if I'm paying for health insurance and a co-pay on top of it, and coming in for a re-evaluation after a major medical event and hospitalization shouldn't my doctor have tracked down the results of all of the tests that were done in the hospital before I get to her office and she determines that she can't make any definitive decision until she sees the results of the high-resolution CT scan that I had on JUNE 3RD.  Little frustrating when all they give you is a stack of prescriptions, a stack of blood work to be drawn and no answers.  "Well it might be scleroderma, or CREST, but we'll have to see those tests so come back in a month and we'll do this lovely little dance all over again." Grrr....

After my doctors appointment, with the heat and my obvious limitations, even with the oxygen, I was done.  I had, however, promised the boy that when he woke up from his nap there would be Cars big-boy underwear waiting for him.  So I managed to haul my rapidly fading ass to a retail giant boy the aforementioned underpants.  He was thrilled.  By about 15 minutes after we got home and showed Dad, he peed in them.  Not ready for the underpants yet.  He's made the connection that he has to poop in the toilet.  Made it fabulously; I haven't changed a poopy diaper in more than two weeks.  But peeing seems to be beyond his grasp.  He knows it's coming, he know's he's expected to go in the toilet, but he will either go in his pull-up or sit down, leave three drops in the toilet, say he's done and then finish it off in his pull-up three minutes later.  And I know, he'll do it when he's ready, but it's not that he's not ready, he's ready and stubborn.

Anyway, a change of clothes, a quick packing of the bags by BF while I sucked down some oxygen on the couch and tried to recover from the day's heat and away we were.  We made excellent time and despite leaving home at 7:15, we made the usually 2-2 1/2 hour drive in 1 1/2, without breaking any speeding laws.  Apparently this was not the weekend that everyone else wanted to go to the shore too - Lucky us!

With the sun already below the horizon and two exhausted parents, we put the little one to bed and almost got to sit up and have some time together.  This was interrupted on course by the fact that I couldn't get my eyelids to stay up.  So much to BF's displeasure I left him to the satellite dish and went to bed myself.

The next morning we were all energized and ready to get to that beach that the little man had been mentioning at least once an hour since well before we left Pennsylvania.  We threw on our swimming attire, covered up appropriately, and hit the pancake house (we're not allowed to call them Diners anymore because the little man is sick of diners, he is not sick of pancakes though).  After a rousing game of "get the boy to eat the damn french toast" we packed off the the beach shop to get goggles (he was very excited about the prospect of getting goggles, his best little friend has a pair and he was highly desirous of his own).  On the way I discovered that I'd left my purse at the restaurant, so we had to venture back to get that after picking up some oh-so-cool green goggles and an over-priced kite.  And then is was off to the beach.

Nothing so far has beaten the look on the little man's face as we topped the hill that leads to our street's entrance to the beach and saw what was had been talking about for weeks.  It was an awesome combination of shock and awe.  It wasn't a pool after all and Rachel was right it was bigger than big. 

We set up our little spot and went over the rules for staying nearby and not going anywhere near that ocean without Daddy or Rachel.  He was really good about both, especially since after our first venture down to the water the edge of the tide managed to knock him right on his butt.  Cutie.  He held my hand like we were physically attached after that one.  So after playing in the sand for a while with his dad and kicking over any sandcastle that reached a height of more that eight inches, BF decided that it was time for a swim.  Unfortunately my body had decided it was time for a sleep.  For the previous twenty minutes or so I had been desperately fighting the combination of nice warm sunny day, beach blanket, and, well, being me.  So BF loaded the little man up with his water shoes and his nifty floatation device that is not only safe-beyond-safe, but matched both his swim trunks and his cool UPF 50+ rash shirt.  Everyone is wearing one of these things this year!  I think it's great, I just never even saw them on the general public before.  Being a pale, burn-only, easily sun-damaged Lupie, I have a full set of full protection gear - no worries about the sun even touching this skin (though that doesn't stop me from reapplying sunscreen incessantly) - I have (all UPF 50+ which blocks 98% of both UVA and UVB rays) a swim shirt that comes down to my elbows, a pareo that is full length and awesome, and a bucket hat that would embarrass BF to no end if he didn't know that the sun is my mortal enemy.  And the bonus is that it gives me a great excuse to all of my least favorite parts of my anatomy!  So I got to nap for a good twenty minutes while BF and the little man played in the ocean and had a great time.  When they got back I was actually refreshed enough to get into the play myself and the little man and I had lots of fun playing in the sand.

On our way back to take a nap the little guy got bitten by an awful green headed fly which was so persistent that it kept coming back after he frantically waved it off.  The damn thing actually made him bleed.  He survived though, after some brief crying, and it was all he talked about for the rest of the weekend - we'd meet someone new and right off the bat he'd tell them all about the nasty bug that ate him.  It was hilarious.

After nap time and some dinner and relaxing, we went to the next biggest thrill of the weekend - the amusement park.  We'd told him about the ferris wheel before he slept and afterwards it was all we heard about.  It's a kiddie amusement park of course so he could ride nearly everything they had there.  BF and I we a little apprehensive at first about the solo rides, would he like them?; would he cry to get off?; would he get off when it was time or would he throw a fit?  He impressed us on every count.  He rode every ride that his height would allow and he loved them all.  When it was time to get off he'd come running to where we were waiting and be off to the next ride.  

I was so happy we went.  I loved that place when I was a kid and it ends up being a really cheap vacation if you don't eat out too much.  I can't wait to go back again.  My grandfather was thrilled with the little guy; glad to have kids back in the house again, it's been a while.

God

When I was thirteen I professed to my devoutly Christian father that God was not going to help me out of my depression because there was no God.

I was thirteen, what can I say.  I hated my life.  I wore black everyday.  I cut my own flesh with razor blades just to feel...something.  God did not seem to exist in this world and my very scientific, rational view of the world shouted SHOW ME!

This view persisted throughout my teens, but over the last few years it has morphed a bit.  

Now I never called myself an atheist, I felt that that was just as asinine as calling myself a Christian.  It required faith, it the case of atheism, faith that I was correct in the assumption that there is no God.  I am not one to make blind leaps of faith in any directions, so I went for the comfortable title of agnostic.  I wasn't sure then, I'm not sure now, but I'm open to what comes my way.

As a Social Sciences major in college I got to do a lot of religious study; after all, how can you understand people or a people without understanding their religion.  And after so much exposure to all of these varying religions with this central theme of goodness to you fellow man and leading a good life I came to view religion in a different way.

Now I know that some people are fiercely devoted to their religions and to that I say go ahead.  As long as you don't use your religion to hurt other people I see no problem with you having faith in something bigger than us.  Just please don't throw me on a pyre when I say that I think religion, specifically the organized practice of religion is a crock.  There may be a higher being and he may want us to act in a certain way, to treat each other with the respect and honor that we deserve as His magnificent creations, but religious sects are frequently nothing more than human devices for the control of the social order.

So I don't believe in religion, however, my studies of history and psychology and sociology and anthropology  have led me to the belief that the faith that people have felt across the span of human existence can't be wholly wrong.  The there is a spiritual side to this life.  As to which one is right, well I don't think anyone's gotten it right as of yet and as fallible humans I don't really think we have the capacity to understand what lies beyond here.  I do however believe that there are certain universalities that fall across most if not all religions that lead to a good life.  I believe in moderation, in living your life to the fullest, is doing as little harm as possible to our fellow man, in working together to solve problems big and small, and in loving each other.  

So of course my current predicament has put me in a position where I'm pondering what might happen in the afterlife because the afterlife seems much closer than it did a short time ago.  Reincarnation is my prime feeling right now.  Nothing would be okay, but I would like to come back and live again or to live through eternity in some ethereal paradise with my loved ones.

I've been pondering attending a church.  I feel the need to make human connections, to have a fuller life outside of my family.  I think the Unitarian Church is for me.  They seem to accept anyone with a belief in the advancement of humanity through goodness, and those are the kind of people I think I'd like to be around.

But I'd like to get some of your opinions, now that I have actual readers.  What is your worldview?  Your religious view and why?  What would be your ideal religion? Your ideal church?  If you have PAH or another chronic illness how did that affect your religious/spiritual views?  If you're a parent, how did that change things?  

I'd love to hear how you all feel, but please please please be respectful!  I don't want to see insults being flung or name calling.  Discussion is wonderful, just keep it within the realm of discussion and not mudslinging.

Thanks and I look forward to reading what you have to say!

But you don't look sick...

The following story was written by another young woman who has lupus. She's a far better writer than I and I'm in love with the way she explains our disease. It's the best way I can think of to try and let people in on what living with my disease is like. It's really hard sometimes to be living with such an invisible disease and even harder when people don't understand what I'm going through.

So here's Christine's story...

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.


As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I dont try to explain this, how could I ever expect her to understand. If I cant explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said Here you go, you have Lupus. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesnt have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a loss of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didnt understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many spoons you are starting with. It doesnt guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. Ive wanted more "spoons" for years and havent found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You dont just get up. You have to crack open your eyes, and then realize you are late. You didnt sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you dont, you can't take your medicine, and if you dont take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasnt even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didnt want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didnt even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your spoons are gone, they are gone. Sometimes you can borrow against tomorrows "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didnt want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldnt have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didnt even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you cant do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didnt want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly Christine, How do you do it? Do you really do this everyday? I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I cant forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said Dont worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I dont have room for wasted time, or wasted spoons and I chose to spend this time with you.

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isnt just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they dont take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com

"Potpourri" for two hundred

So life has been rather..well...boring this week. Not in a bad way, just in a run of the mill way.

We had our Pearl Jam posters, tickets, and yes even the guitar pick that Mike McCready threw to BF framed and mounted on Sunday and in two to three weeks they'll be hanging over our TV in the place of a piece of art that I will not loose any sleep over taking down.

Come to think of it, Sunday was a pretty good day. At the craft store where we had the framing done, the little man and I scanned the art supply section and scored some pretty cool stuff while BF waited for the framing girl. After the craft store it was nap time. Unfortunately nap time really has become nap time for both the little man and me. Around mid day I just get so tired that I either feel like a zombie or I sleep...and I really like to sleep anyway, it's just not a very adult thing to to. It is however a very adult-with-fibromyalgia-and-pulmonary-hypertension thing to do. So I'm not sweating it.

After our naps, we had some lunch and went to the supermarket as the cupboard was oh-so-very bare. I brought the oxygen and was totally prepared to go sit in the car if the need arose, but it didn't...I managed to make it all the way through the shopping trip and home before I crashed. And I mean crashed. By the time we'd read the little man a story and put him to sleep and BF had put the perishables in the fridge , I was fast asleep on the couch where I had lay down next to my wonderful air compressor to get that pulse ox up into the low 90s at least. I only woke up when BF turned off the tv in preparation for going to bed himself and then stumbled into the bedroom, snuggled up with my sweetie and fell right back to sleep.

The next morning I had my first interview for a teaching job ever! It was very exciting and it went very well. This was the reschedule for the interview that I missed the night I was admitted to the hospital. I got to sit down with another job candidate and talk to two peer interviewers for almost two hours. I really enjoyed it and I felt like I got to showcase my talents nicely. I also found out more about the job and it sounds great. It may require the the little man go back to daycare for the two days a week that he's here, but it also might not. If I get hired I'll just have to see how it works to have him around those two mornings (as he sleeps nearly all afternoon). I should know in the next week or so as their contract year starts August 1st, so I'll be letting you know as I know.

Tuesday was nice. The little man and I hung out, he napped, we hung out some more. Then BF came home and we all hung out before driving the little man to his mom. BF and I went out to dinner afterward to celebrate my interview. Isn't he cute? He takes me out to dinner to celebrate my first interview! I didn't even have to get the job to be treated to a steak!

Wednesday I sat. All day. I wasn't feeling well and I was depressed and miserable...so that was great.

Today I had four doctors appointments scheduled and then had plans to go out to dinner and see the Sex and the City movie with my mom. - I woke up with a searing migraine at 7:30. The first doctors appointment - with my neurologist of course -was just not going to happen.

The second was my first visit with my new pulmonary hypertension doc, so I absolutely had to make it. After half-sleeping until the very last minute, I threw on the skirt I wore Tuesday, a tee shirt, my awesome new cream mary janes (I'm a bit of a mary jane addict - BF endlessly makes fun of me when we go shoe shopping) and hauled my ass to the car. It was drizzling outside, most probably the cause of my migraine; barometric pressure changes are my worst enemy. When I walked into the office, exactly on time, my mom and BF were already there waiting for me. When I found out I had this disease they signed on to Rachel's PH Team. I hate doing the doctors appointment rounds myself and as this is so serious and there's so much to think about and remember, I felt I needed a team. And since BF lives with me and the drugs and the symptoms and mom is an RN who is more like my best girlfriend now that I'm an adult. She really is an awesome mom; during my turbulent teens I never would have guessed that she and I would have such a wonderful relationship as adults. She respects my space and my decisions and my mothering; we can talk for hours; and best of all, she is totally there for me, from babysitting when I'm sick as hell to coming to doctors appointments and saying the things that I can't bring myself to say. like when she told the doctor today, point blank, that the little questions that I was asking about what he thought about how promising the medication I'm on is for people with my type of medical profile were really about the fact that the idea of mortality was "hanging over my head like a cloud." I couldn't get out the "so do you think I'm going to die" question and BF is as scared and depressed and unable to express all of that as I am, but she can and that's why she needs to be on the RPH Team.

The visit went well, with my migraine boiled down to a thick syrupy acid slowly eating at my right temple rather than a searing ice pick spreading screaming pain throughout the whole right side of my head and neck I was actually able to think and converse, so that was helpful. The new doc seems good. He stopped and asked for questions several times, answered them as thoroughly as he could with the limited data he has right now, didn't bullshit me about things that he couldn't answer yet, and was generally very congenial. I'm still going to get a second opinion after we get the results of my 6-minute walk test (yes, it's exactly what it sounds like - how far can you walk in six minutes, back and forth along a thirty meter length of hallway - sounds fun!) and another echocardiogram, just to make sure that the pressures that they got from the first one weren't artificially elevated by an acute episode. I asked about repeating the cardiac catheterization, but he doesn't think we need to right now; I don't know why not, I'd rather have exact pressures and not the often-faulty estimation from an echo, but as he's the one with the M.D. after his name, there will just be sound waves for now.

So after that appointment I thought I had an appointment with my psychologist, but apparently what I thought was a standing appointment was not and although the other girl that had the appointment time I thought I had was kind enough to offer me her appointment (very sweet), with the state of my head I opted to go home and make more appointments instead of chatting about my current state of misery for an hour.

So that's what I did. I sat on the couch and scheduled five different procedures and tests at the local hospital and an appointment with a hematologist per PH Doc's suggestion. Several specialists have actually suggested that I see a hematologist because of my complicated medical...situation is the best word there I guess...but this is the first doctor to actually give me someone's name and number, making my life exponentially easier. I'm hoping that this guy can get me insurance approval for at-home PT/INR testing so that I won't have to (forget to) get my blood work done at a lab.

By this point my migraine was being evil again, so I rescheduled my eye doctor's appointment and lay down to take a nap, assuming that BF would be home at five-ish, wake me up, and hopefully I would be in good enough shape to keep my movie and dinner date with mom. Unfortunately I forgot that he had also made a dinner date with his mom. Not expecting me to be here, he didn't come home at all and I slept until just past six. When I woke up my head still felt like a big throbbing mess, so I called my mom and cancelled. Then I promptly fell back to sleep until nine when BF arrived home with the little man.

Poor little man. He was coming home to us early this week anyway because we're going to my grandfather's house down the Jersey shore for the weekend, but he has an infected nail that just hasn't been responding to religious applications of antibiotic ointment, so I told his mom that I'd take him to the doctor tomorrow and get it looked at. But not poor me, because damn that kid lifts my spirits better than any amount of antidepressant ever could. I walked into the living room and instead of "hi" he just said "I like you" - what could be better than that?

So tomorrow we'll go to the doctor in the morning and perhaps try out the new watercolor paints that we got last weekend and then we're going to go over to my mom's so that he can nap there while I go to the appointment that my rheumatologist has very nicely squeezed me in for. And after his nap we'll go to one of the massive retail giants and buy sand toys and assorted other awesome beach stuff. I'm really excited to take him to the beach, even though I absolutely hate both sand and the Atlantic Ocean where it touches New Jersey. It's weird that I can genuinely look forward to something I really don't enjoy in the least because I want that little guy to have a blast. I have a whole bunch of reflections on this whole becoming a mom without having a baby process that I'm working on; I might actually finish it sometime soon, but as of now it's very much a work in progress, just like the mom side of me.

So I'm hoping to have a nice weekend. With mornings on the beach, nice long afternoon naps, miniature golf, evenings with BF, a couple hard lemonades and a Scrabble board on the porch, and maybe even a trip to the kiddie amusement park where the little man can get high on cotton candy and spun around on mini versions of my least-favorite amusement park rides.

I can't wait to tell you all how it goes!

Second Row for Pearl Jam? Oh My Feakin’ God!

So I have always wanted to see Pearl Jam live. My dad was a bit of a surrogate Gen Xer in the 90's and I was exposed at a young age to some really awesome music, including the aforementioned leaders of the Seattle alternative rock scene. So I've wanted to see them for, oh, about 15 years now. This week that dream actually came true.

BF is a member of the Ten Club, Pearl Jam's fan club, and he has been for about 7-8 years now. Ten club members get the chance to buy tickets to upcoming concerts about a month in advance of regular ticket sales, with one caveat - you have no idea what seats you've got until you show up the day of the show and pick up your tickets. For most shows, the seats are assigned by seniority within the Club. For the two shows in Camden this week, there were a handful of rows whose seats were assigned by lottery. Rows 1, 2, 9 and 10. Excellent seats.

So for the first night - my first Pearl Jam show!!! - we got the regular Ten Club seats and ended up with decent, though not amazing seats. It was still an incredible experience. The fans at a PJ show are incredible. Eddie (vedder, frontman extraordinaire) is amazing and at least two or three times just let the crowd take over the song, hitting every lyric, every note right on. The set list was great. With a band that's been around since the early 90's the catalogue of songs is so huge that there can be some serious variation in the set lists and this one was great, with some good obscure shit thrown in with the tried and true fan favorites like "Evenflow" "Dissident" and "Crazy Mary". I left elated, even if I couldn't speak after screaming along with the band all night.

Night two turned out to be an experience I had never even guessed I would have ever gotten to have. We picked up our tickets at will-call, looked at them and Holy Shit! Second Row Pitt Section tickets. After going inside and picking up that evenings poster (each nights poster is unique and collectible and artsy goodness), getting some souvenirs (including a free Pearl Jam drawstring back-pack, tee shirt, and the DVD from the Italian leg of their last European tour) and some drinks, we went to see our fabulous seats with about two hours to go until PJ hit the stage.

We get to our seats and it turns out that Row 2, at that point, is the Front Row. Nothing between us and the stage but a barricade, which our kindly stage guy tells us we're welcome to spend the evening standing against (and we definitely took him up on that one). We were slightly to the left of the center section with a totally unobscured view of the band for the whole show. Before we left for Jersey that afternoon I had been a bit apprehensive about how well I was going to hold up physically. I had wreaked some serious havoc on my left ankle the previous night and had had to use the portable oxygen a couple times during the first show, I was also tired to begin with. And once again, my good friend adrenaline kicked in beautifully and I spent the entire night standing against that barrier, singing at the top of my lungs, in a state of pure elation...Eddie Vedder was Right There! I did have to spend the entire second half of the show with the oxygen backpack on and pumping, but hey, whatever it takes.

So today I'm still in a state of disbelief. It really was real and I'll even put up the blurry cell phone pictures to prove it, but the feeling of providence is awesome. My luck as of late has been both awful and insanely great. I've been diagnosed with a terminal disease, but I've been surrounded by love and support, gotten some good job opportunities, and now this, this night that I will never ever forget. I felt blessed. I felt hopeful for the first time in a month. When Eddie sang "Alive" after the second encore break, I sang like my life depended on it because "I'm still alive!" and I'm going to stay that way for as long as my resolve and modern medicine can keep it that way and I'm going to try to hold on to that night, that hope, and that attitude.

Little Ray of Sunshine

This does not by any means absolve anyone from the crucial de-lurking that should be going on in the comments section of the previous post..however, I have a bit of news that lit up my day yesterday.

My dear mother (no sarcasm, seriously) sent me a link to a real estate listing. Now this is something she does frequently in her free time and usually keeps to herself; scanning real estate adds, window shopping, you might say. She's not actually interested in buying a house; they just put a brand new deck and front lawn on the little fixer-upper they bought seven years ago. They've done an incredible amount of work on that house and it really is the prefect size for a couple their age with no children, but with enough space for the occasional grandchild to sleep over and a big backyard for sprinklers and barbecues. But back to the listing...It's essentially a duplex, they're calling half of it an "in-law suite" which is exactly what my mother is proposing to me: that she and her boyfriend of ten years and me and BF and the little man buy this gigantic house and all move in together (with the temporary addition of my twenty year old brother, until he gets off his ass and get his own place).

Now some people would dismiss the idea of living with their mother, entirely by choice, before they even turn twenty-five as ridiculous, possibly even suffocating. For me it's like a huge release. Being this sick makes me feel like I always need backup. With the little man, with groceries, laundry, dishes, anything you could possibly think of that a stay-at-home-mom (which is what I am right now I guess) is worried about. With my mom around I'd feel like I had someone to help out when things get bad, to watch the little guy when BF wants to go grocery shopping alone and I've got a migraine. It would be a huge wave of relief to have a live-in person I love to death around to help me out, especially if I get sicker, or get better and get a baby (such a weird new verb to use there).

And the best part about it is that when I suggested it to BF he was adamantly for it. How many guys would want to buy a house and live with their mother-in-law? He makes me happier everyday. He and my parents have had this practically instant friendship and it's so gratifying. He fits in with my family with such ease and genuineness that will make our lives together that much easier.

So we drove by the house yesterday evening. It's enormous. Three garages, five bedrooms, a full acre of land. The aesthetics need work; lots of old iron fences and handrails and such, but otherwise it's great. My mom had an appointment with the realtor this morning to see the house and talk about it a bit, so I should be getting the low down on that visit soon, but this is all just so very exciting. The only problem is my mom's BF, who probably won't come on-board with the whole plan, sadly. He's been putting so much work into their house and it would be a tough one to get him to leave, so I'm not getting my hopes up too high. If it doesn't happen with my mom though, there's always the possibility that we could talk my future MIL into it. It wouldn't be quite as great because she works days during the week and my mom works twelve hour shifts on the weekends and has every fourth weekend off. But it would still be help and still be a house rather than our rapidly-growing-too-small apartment.

So that's my news for the day. I'll keep things updated as I know anything more.

Pearl Jam tonight! Woo-Hoo!

Coughing up blood again...Oh and Roll Call!

So yeah, today and yesterday I've been coughing up clots of blood. Two big ones, mostly small ones. No, like, bright red, "you're actively bleeding" blood. The thing is that I'm reluctant to go to the hospital for several reasons and BF agrees. My PT/INR is probably just slightly elevated from the Excerdrin I took Monday and Tuesday and that's causing slight bleeding, which is clotting and I'm bringing it up. The new PH med is giving me headaches and they go from completely tolerable to "somebody please stick an ice pick in this spot right here" over the course of the day. And on a rainy day like today, with the barometric pressure going up and down, I'm bound to be in pain. But note, I did not take any of the dreaded Excedrin today...don't want to exacerbate things. I just don't see any purpose in going to the ER with symptoms of a disease that I was just diagnosed with, as shitty (and scary) as those symptoms may be. So I'm going to wait it out. This has two more days to rectify itself and if necessary I will spend the whole fucking day in a gown on a gurney on Saturday.

Tonight was game night. Formerly Dungeons and Dragons night, but now modified for variety. It was fun. I had to switch sides of the table to escape my brother's incessant tapping of his fingers and hands and feet and any goddamn thing he can think of to tap...but it was fun nevertheless. It's the only real socialization I get at this point outside of my family, so it's pretty nice to go hang out with them and play some interesting games (no, most likely, we don't play anything you've heard of, unless your into being a board games geeks and ordering them from Germany).

But enough about me for this evening. I'm fine and I think it's a fine time that all of these new people that are reading this drivel come out of the woodwork and say hi, as no one ever comments. I would love to hear who you folks are, how you got here, and what you think. I never actually thought that anyone would read this but hey, you are, so let's hear who you are.

Little Calmer

Took an Adavant. Not feeling quite so much now. Much better. And BF is home. Things are always better when he's here. Need to refill that prescription though...

So I've been home for almost two weeks now. Life is far easier in the hospital.

Here I have to live. There I could just lay in bed, take pain drugs and watch Lost.

And it's not as if my health is any better now. My lung still feels like there is a wet sponge inside of it, like the alveoli are coated in some sticky substance that the air must drag through before reaching my blood. Then there's the fucking pain. Yesterday everything seemed pretty much okay. This morning I was woken up by a pain below my sternum that...well it just fucking sucked. And I hate being drugged all the time, but I don't see any other way that I can be anything other than a totally miserable human being. Like right now. I'm having pain in my left lung and I'm ridiculously sad, but I don't want to take Adavant and Oxycontin and be a zombie when BF gets home from dropping off the little man. I want to be an active member of the big giant game of life again. I really want to add "fucking" as an adjective before pretty much everything.

Situational depression is the clinical term. As in "your Wellbutrin isn't going to do a goddamn thing because you should be sad". I'm almost out of Adavant. It makes me feel nothing but the desire to sleep. Sometimes that's the more desirable state.

God, I'm sorry, I must be so fucking depressing to read right now. I just can't seem to get out of this hole this week. And I have a whole bunch of things to be happy about. I'm going to see all of my absolute favorite bands in the next two months. Pearl Jam twice this week. Ani DiFranco in early July. And then Nine Inch Nails in August. I'm head over fucking heels in love. We have an adorable little man who loves me to death, who I love as my own, that lives with us half of the time, cuddles with me, announces that he likes me spontaneously. I'm getting a brand new little sibling at the end of the summer. An amazing new person to love and increase the size of my already amazing, huge family.

I feel so fucking ungrateful. I wish I could change how I feel. I wish I could just be happy, but this pulmonary hypertension shit is like wearing a lodestone. I feel like such an asshole for being so miserable...I can only imagine what it's like to have to live with someone like me right now...Poor BF!

...And I can still pull off an awesome Father's Day!

Today Kicked My Ass. Of course so did yesterday. In fact yesterday was downright disheartening. BF and I took a trip to Home Depot to buy my dad's Father's Day gift and after less than 15 minutes in the store I was exhausted. I got a drink and had to wait on a pile of dry wall outside for BF to bring the car around because I couldn't walk to the car. Then we went to Target...that sucked as well. I had to find places to sit down like three times during our 20 minutes excursion for some basic Target crap. I was beat by the time we got home and pretty much vegged out on the couch for the rest of the day. The little man was a nice pick-me-up when his mom dropped him off; he always lifts my spirits, especially when he comes home on Saturday. He comes in and snuggles and tells me how he's going to make me feel better with hugs and kisses, which of course makes me feel much better, even if it's just emotionally. 
 


But despite feeling like crap, I really wanted to make this Father's Day special for BF. First off, he's an awesome dad. I wish everyone got to see the cut away intimate view that I get to see of him and the little man together. The little man loves his dad soooo much and it's not just because he's his spawn, BF adores that little boy and he devotes himself to him as much as he possibly could. He's also an exceptional boyfriend, friend, lover, partner, and person. So I thought he deserved a special day.


I woke up early, before either of the guys were up; glanced around the kitchen and found that the cupboards were bare, so I went to the grocery store and picked up a bunch of breakfast stuff. I got home at about quarter to ten and woke The little man up to have him decorate the envelope of the Father's Day card I'd picked up for him. He drew on it a bit and helped me write "Daddy" on the front, but he was anxious to go wake his dad up and give it to him. So I grabbed a plate, a couple of crumb doughnuts, and a big glass of BF's favorite orange juice and lead the little guy in to wake up his dad.



I had already given him my gift; a coupon (they don't make gift certificates) for him to design and order a pair or shoes that he's been eying for months now - he really liked it; I was thrilled. Last week I had also spent a good deal of time putting together a present for The little man to give his dad; I took all of the great pictures that I had of The little man and of us with The little man and put together a calendar so that BF will always have pictures of The little man for his desk at work - the kid's too cute not to show off, but BF is a very private person when it comes to our home life and he never brings in pictures. So The little man brought his dad the calendar and they sat in bed and cuddled and ate doughnuts and were so freakin' cute. While they did that, I whipped up some pancakes and bacon. I had bought his favorite thick-cut bacon and some real organic maple syrup. After the boys had cuddled for a bit, BF and I ate our pancakes and the little man had a yogurt tube and half a slice of bacon - a stretch for him as he usually wouldn't touch the bacon. 



BF seemed blown away that I'd done so much, especially being in the physical condition that I am and I was really proud to have been able to make his morning special and feel productive for the first time in weeks. After breakfast we all hung out on the couch, cuddled and chatted, while BF checked out the websites for creating his new shoes. The little man took off all of his clothes after using the potty totally unprompted (Score!) and sat on my lap wrapped up in his favorite blue fuzzy blanket. I love Sunday mornings; we all just get to be together and love each other and enjoy having nothing to do.

 The little man went down for a nap at 12:30, but didn't actually go to sleep until 2:30, when BF informed me that while he was taking the ribs out to the grill (more on the ribs later) he had heard The little man babbling away in his room. Getting him to nap has always been my thing, I don't know how it became my thing, probably because I can be firm and still loving and I'm not quite as charm-permeable as BF can be; The little man doesn't try any cutesy crap when I come in and he knows he's supposed to be napping. So I went in and told him that he had to nap so that we could go over to my dad's that afternoon, which he was really looking forward to, I tucked him back into bed (he was upside down and he had his feet up on the bed rail). I told him that I'd be back in fifteen minutes and I expected him to be asleep and when I came back and peeked in ten minutes later he was fast asleep; he's an awesome kid, he's always amazing me. 



So while he napped and BF finished off the amazing spare ribs that he grilled up to bring to the Father's Day barbecue, I took a nap myself as I could barely keep my eyes open. When BF woke me up at 4:30, we all got dressed and got all of our stuff together and drove over to my dad's new house for a nice big family barbecue. My step-mom's whole family was there and it was great. They're all really warm and welcoming and friendly and they just feel like family already, in fact they felt like family the first time I met them. It amazes me sometimes how much things have changed for the better in my life over the last two and a half years. Even with all of this health crap and losing my job, being unable to work, struggling through school, and trying to build a family while feeling like dirt, I still have such a wonderfully full life. The people that surround me are just so very loving and supportive that I can't even believe it sometimes.

We had a great time and ended up staying past the little man's bedtime - par for the course when hanging out with my dad, Amy and Tyler. It was really nice though, I'm getting to know my new step-siblings, whom I don't really like to refer to as step at all, I mean they call my dad "Dad", and Amy is like this instantly great friend and role model all in one...They don't feel like a step-family, they feel like a family. So we're getting closer and closer and it makes me incredibly happy to see us all coming together, to hear my dad saying things about considering himself a grandfather at this point, to hear The little man ask a million questions about when we'll be seeing Amy and if he can kiss her and play with her and he follows her around like a puppy...it's adorable and really heartwarming, especially if I end up not having children of my own, to know that my parents will still have a grandchild, a little man who adores them and trusts them and really loves them.
 


At the end of the night we came home and the little man went right to bed after reading his favorite book about Tonka trucks. I, of course, had pushed myself too hard and had a migraine and ached all over by the time I hit the couch. I took some painkillers, a fever reducer, muscle relaxers and an anti-anxiety pill and have been crashed out on the couch trying to feel like I'm not on fire (I've been running a fever on and off since I've been home from the hospital) and not in pain for about four hours now...I think it's just going to take sleep, but the migraine's gone, which is a good thing because if I fall asleep with one I'll probably wake up with it and I've got to be up and alert so that The little man and I can work on our numbers tomorrow morning!



So, goodnight all! Hopefully this was a nicer thing to read than the last two depressing-as-hell pieces. I'm trying to just take each day as it comes and make the most out of everything. I have an appointment with my pulmonary hypertension specialist on the 26th, and hopefully he'll be able to tell me more about where I am with this disease, where it's going, and what the plan is for keeping me around for another fifty happy years.

A Singularly Remarkable Evening.

I just had a wonderful night. I really needed it.

I spent the evening with a very old friend, probably my oldest friend. We met the first day of junior high school. For some reason our english teacher had arranged the room so that there were two lines of desks facing each other on each side of the room, perpendicular to the chalkboard, and a fifth row of desks spanning the rear of the classroom, parallel to the chalkboard. This incredible young woman, who would help to shape much of who I have become, and I were the only two people assigned seats in the back row. Rather odd when I think back on it, but we immediately became friends. It was perfect timing for both of us really. I hadn't really had any friends in elementary school and her group of friends from elementary school had been very trendy, preppy, "pink" girls; she had found industrial rock and writers of substance over the summer and was finding she had less and less in common with them. I on the other hand had been groomed for just this kind of friendship; my parents both listened to good music, my dad having introduced my to alternative rock well before my age hit the double digits, and I was a loner-bookworm, ripe for the befriending.

We became inseparable nearly immediately. Weekends were our world as she lived more than twenty minutes drive from my house and my dad wasn't too keen on driving me there every day. I practically lived at their house from Friday afternoon until Sunday night for years. We just went together beautifully (and to the dismay of our parents we got into trouble beautifully as well). She was smart and funny and sarcastic. All of the qualities that I would someday find I loved in men, only she was my sister; we connected in a way that only young women are truly capable of connecting.

Tonight I discovered, as I've discovered with the two other women who I would be proud to call sisters, that time doesn't change a damn thing about that bond.

The end of high school is a perilous time for intelligent, adventurous, risk-taking young women and that was all too true for us. We did too many drugs, we screwed the wrong guys, we put ourselves in too many risky situations. I would like to say that we all remained unscathed by our risky pursuits, but we didn't. We've all come out of the other end strong, independent, well-defined women with the experiences that have hopefully taught us all the lessons that we'll need to stay the course and live wonderful lives, but that rabbit hole was deep for some of us. Especially the friend I spent this evening with.

I haven't seen her in about four years, but when I did, it was incredible; the years melted away and we fell once again into the familiar, honest, powerfully connected pattern that we'd been in before the various situations in our lives had pulled us apart. We hugged that bare, hold me I miss you hug when we saw each other and did the same twice more before the night was over. We talked as if the time had been seconds rather than years, recounting our own trials and tribulations and our hopes for the present and future. I got to know what her life is like now, she got to learn all about mine. We just talked and talked and talked. Had we not been wandering around the neighborhood, had she not had work the next morning and I a sweetheart to get home to, we would've talked all night. But this, I am confident, will be only the first of a very many conversations that will come in the near future. She shares my disdain for people without direction and ambition, she is working hard to secure her own future, and damn, she's the same girl that I fell in love with more than ten years ago - and that's excellent. With all that's been going wrong in my life lately it's impossible to put into words how wonderful this evening was. I'm so happy to have her back and I'm so glad that she came out of her own challenging rabbit hole an even better woman than when she went in.

I Like To Be Here When I Can...

So I'm home. For some reason I always expect things to be different when I leave the hospital than when I went in. Never the case. With the exception of Oxycontin to control the pain in my chest and Adavant to stifle the crying jags being home is only slightly less depressing than being in the hospital. Here I'm not tethered to an IV pole 24-7 or forced to lay in a damp bed as I sweat through fevers and watch endless episodes of Lost. I get to sit on the couch, accompanied by my ever-faithful little Penny during the day and my sweet sweet man at night. I get to sleep in my own bed and turn the air conditioning up high enough that not even a stupid fever (which I'm still running) could make me sweat. I have my satellite dish back rather than the 15 cable channels (9 of which were either news or sports) that I was being charged $6 to enjoy. So yes, home is a fabulous step up.

But I still feel like shit and there isn't a damn thing that I can do about that except continue chewing down those mind-altering substances and sitting...just sitting. Getting to the door of my apartment is like a quarter mile hike. I took a shower last night (the first one I've been allowed in way too long - woohoo!) and when I got out I had to lean against door jambs until I could just plop my ass on the couch and try to get my head to stop swimming. Besides being drugged and exhausted (well probably in large part because I'm drugged an exhausted, I've been on the verge of tears since I got home. Everything makes me weep. The beautiful flowers that surround me, sent by caring friends and relatives. My boyfriend's head on my shoulder as we watch Jeopardy! And of course there was the ultimate crying jag once I got to bed last night. He just held me and tried to calm me and let me cry it all out. Except it's not all out and I don't know how I'm ever going to get it all out. I ended up taking a whole adavant (half is usually my limit as they tend to make me stumble over things that aren't really there) just to stop thinking, because think is the enemy at this point.

I'm in limbo until we find out if these new drugs are going to work. I won't be getting any better, hopefully I won't be getting worse. I have no news on the jobs front and I just feel stagnant, useless. I feel like I've lost a huge chunk of myself. Death is always at the forefront of my mind. Like what do I have? 10 years? 15? 20? It's scary to think that the length of my life will now be dictated by how long the doctors can keep my meds working. And then there's the other elephant in the room...a baby. I've always been a mom-to-be. Anyone who knows me knows that. When presented with our beautiful little ray of joint-custody sunshine a year and a half ago, I jumped right in and fell in love immediately. And he is amazing and I don't want to belittle in anyway my feelings toward him. Having him reach out to hold my hand as I grasped at the pain in my heart or curl up on my lap and ask what every bruise on my arm was from, play with the oxygen cannula, and just hunker down and give me five hugs and five kisses, just to make me better - these are things that fill up my heart in a way that I never imagined, simply because you can't really imagine it until you really have it. He has a mom though and I can never be his mom, even if I can come close. She will always be the first one he runs to, the first one teachers defer to, and the first in his little heart, which I know is the way it absolutely should be. There's just a physical, aching maternal need that I feel to have a baby of my own. To take the test; to excitedly tell him and my parents the news; to watch my belly plump as a little part of us becomes a whole new person inside of me; to see him/her on a sonogram; to tell people that they really can't touch my belly; to see that little scrunched red newborn face for the first time and know that this little person will have an unbreakable bond with me for the rest of my life. To be "Mom". I really don't know how to deal with losing that. It feels like losing an arm. It feels like I've been robbed of this sacred part of womanhood and god dammit it's unfair, it sucks, it's just not right.

I keep thinking "why me" and I hate that too. I've worked for the past five years (since my pulmonary embolism and last hospital stint) to eliminate that damn little self-pitying phrase from my mental vocabulary. Things happen because they happen. Lousy genes, birth control, hormones in beef, drugs I did in my teens, all of these could or could not be contributors. One cannot deny the existence of a supreme deity that is directly involved in the lives of man and then ask why such a being would do this to them. So I feel like an asshole for pitying myself. I feel helpless to stop these feelings though and I absolutely despise being depressed (not that I think anyone out there enjoys it. I cry and stop and cry harder and try to relax. I take comfort in what I have. Being in love. Being loved. Having completed a Bachelor's degree. When the sun is out things are a bit less depressing, but I still can't help but weep at just about anything.

Well hopefully I can just get through this weekend, comfortably numb and distracted enough to not cry as I help my six-months pregnant step-mom unpack dishes at their new house. Monday I can call my shink and get in there asap and I can call my doctor and get them to give me a portable oxygen tank so that I can actually move myself and things without nearly passing out.

Ugh. Enough bitching for today. I hate bitching. I just wanted a smooth ride for a bit and it seems that a hurricane has blown in early…