"Getting It."

[Ed.'s Note: Thanks for your comment Colleen. As I started to read it and respond, I found that I had far too much to say in the comments section about this corner of my life, so why not just make it a post and say what I really had to say. That said - I'm a pretty open person when it comes to disclosing personal information. BF, not so much. The idea of my discussing our lives on the internet is one that he's not really on board with, but it's more that he doesn't get why I need this outlet than his not wanting me to tell people about my (our) life. And of course he wouldn't tell me that I couldn't. Hell, his ex blogged about their relationship before and during our whole affair and the separation and divorce that followed; still does. But I digress (as usual); in the interest of respecting him and our relationship I've tried to keep the following post as honest as I can without sacrificing his need for some privacy.]

I really don't think that anyone who hasn't been there in some capacity, let alone this capacity can really "get it". They just have no reference point. I know that some people are just naturally sympathetic caretakers; love can seem to be the fuel that they run on. BF is a normal, well person - has been all of his life, hell, he went through Navy boot camp as a heavy kid right out of high school - but he's definitely not a nurturer. He's a sweet, giving, patient, generous, funny, sarcastic man and my other half; I love him more than anyone I've ever been with, but nurturing is not his bag.

I don't know if it's possible for him to understand the physical reality of what it's like to live like this, both never having had physical limitations that he couldn't control and knowing that he has had physical limitations that he could control. That he could just "suck up" and deal with it, however miserable it was. Boot Camp has made it into our discussions several times; eight weeks of hell, eight weeks of being broken down and pressed into a mold. I get it. It sucked. And he still has that "buck up, you can do it if you just try harder" attitude sometimes. Part of the ability to "buck up" is being able to see the end of that position of having to intentionally step into a role where you will just accept pain and physical exhaustion for a short period of time. It's something that I'm pretty good at on a short-term basis, but not for extended periods. I can make it through six weeks or so of the misery of forcing my body to be run ragged, but it's not sustainable and it ends up with either a hospitalization or being knocked out of commission for a month or two. But that's something that I do think that he should "get" because he's seen it happen. I was working full time at the school teaching, spending two evenings a week in my senior seminar, spending the other five nights a week preparing lessons, and still trying to be a good girlfriend and mom and it was just a bit more than two months after I had to drop student teaching that I was diagnosed with PAH. Months before we had planned a vacation to Playa Doradas in the Dominican Republic that there was no way we were going to miss unless I was bedridden or hospitalized. After we got back from an eight day stay where I spent almost half my time in the hotel room reading just because I was too exhausted to even get dressed and walk the thirty feet to the pool, my symptoms were so bad that I laid on the couch for another two weeks just recovering. My Skin Hurt. My Joints Hurt. I was Exhausted beyond anything I'd ever experienced. Oh and then I was hospitalized and diagnosed with PAH and scleroderma. So he's seen the worst, I just don't know if he's put it all together in his head like that, if he understands the clinical causation. But he's also seen it happen when I just push too hard for a three-day vacation, trying to squeeze all of the time and activities that a normal person would get to experience out of it. So he's seen it. He's seen that I have the capacity to push myself for some special event and that I'll pay for it if I do. He still resents the fact that I'll push myself (to the point of actually wearing my first pair of heels and playing quite the guest-of-honor) for my graduation party, or a holiday get-together, but that I can't do that on a daily basis in smaller doses to keep the house clean. Part of me understands that feeling on his part, but I do a lot more than he gives me credit for and I'm trying to do more (Anti-Depressants! Who Knew!). Part of me wants to scream (and sometimes does) that I don't want to be out of commission every other day because I pushed too hard the previous day for something like folding laundry.

Another thing that I do know that is that whether or not he can understand the physical and emotion strain that I'm under, he can come to understand me and trust me. Trust that I'm honest about my symptoms and my abilities on a day to day basis, that I really would rather be a well, productive member of society and this household, that the physical ramifications of taking all of these drugs, living a life devoid of the socialization that I need, worrying about my health, my future, my family, and the frustration that comes from it all take their toll and can mean that I'm not always going to be a pleasant person and it's not something I can control as well as I could if I wasn't dealing with so much constant emotional crap. And he knows that if he wants to continue our relationship on a more permanent basis (which he says he does) that he is going to have to accept these things as truth whether he "gets" it or not. We're just still working to get to that place. The place where he doesn't resent me, feel abandoned, feel that I'm disinterested feel used, and where I don't feel like he's being selfish and unsympathetic.

Mind you, it's a good solid relationship. Has been from day one. It was like someone stuck two magnets just the right distance from one another and the universe did the rest. Those are just the bad days, or hours, or minutes. We're focused on communication and nurturing what we have. Just as any relationship takes work and attentiveness, ours is going to take that and then some. We've been solidly working our way up the relational hierarchy to a place where we're starting to communicate much more openly and honestly about how we both feel and get what's underneath all that crap you put up to hide the parts of you that you don't want to have seen in the start of a relationship.

I did make him read "The Spoon Theory" and I often use the analogy in our talks, especially when he's frustrated with the lack of "spoons" that I have left over at the end of the day for him; it definitely helps. [Anyone who hasn't, read it. There's a link on the sidebar and whether you're sick, have people that you love who are sick, or are just looking for some insight into what it's like, this is a really good essay that has both touched and helped everyone I know that has read it.] We've also been reading some good books, both from the caretaker and patient perspective, and they seem to be helping both of us see what the other is going through more clearly. I tend to overreact to anything that I feel is an attack because of the illness, or to his lack of desire to get into "what's really wrong" (see also: avoidance, withdrawal, emotional unresponsiveness). And I can go from two to ten in a very short time if I feel like we have an issue to deal with and he's refusing to communicate with me. It helps to know that I do that. It also helps him to know that I will do that. And books like "Beyond Chaos" help us both to handle those situations, hell, life in general, in a more productive, engaging, loving way.

I'd love some suggestions of relevant books; most of the books that I've read are either too much about the disease itself (clinical, cold) or try to make generalizations about "living with chronic illness". As if "chronic illness" was a diagnosis. They might get the chance to touch on all of the autoimmune diseases, or the most prevalent ones, but they're too broadly sweeping. I also find that most don't give practical life advice for what to do about the earthquake that has taken over your life. What to do about work, family, relationships, sex, friends, ya know? Life. Especially for someone in their 20's like me who isn't inside of an established career/family framework and needs more help on how to put those things together, than how to keep them going. Which is really the most critical thing that I need because the blocks that I've been building my life with for so many years, that I imagined were stable, have come toppling down on my head and I have to rebuild my hopes and plans about things that I thought were set long ago, like my teaching career or motherhood, really, my path through life. It would definitely help to have a manual of some kind, or even just a tourists guide.

But I have found some relatable personal essays and such that have at least given me a window into how other people do it and that we aren't the only ones who struggle at it. We aren't the only ones who haven't gotten it right the first, second, third, or twenty-second time we tried. It's strangely hopeful to not be the only ones struggling, to not have to look around and say, "Why are we the only people who can't seem to get this right?”

It's a Job.

So I'm rapidly learning that this whole "sick" thing is pretty much a full time job in and of itself.  I spend the entire day today on the phone scheduling appointments; getting documents notarized to maintain my health insurance; talking to the health insurance company; rescheduling appointments; getting documents faxed from one doc to another or to the blood letting depot that I seem to visit at least once a week.  Five o'clock rolls around and I'm disappointed because I can't get in touch with anyone anymore.  This is sad.  And tense.  

Then I got to spend a good hour on the phone with the customer service department of my satellite tv provider.  They're assholes.  It's just that simple.  They lie constantly, no one seems to have real authority, and their policies are virtually non-existent.  When I signed up with them I bought a package that required an 18-month contract, but also included a $30 a month rebate for ten of the eighteen months.  Of course the form for the rebate didn't show up with my bill until two months after I signed up and the rebate expired a month later.  I sent it out, promptly, but neglected to include some number from my account id and the rebate was returned to me with instructions to correct and return it...Two Months Later.  I fixed it and returned it, but it was past the expiration date and the satellite service just ignored the whole thing.  I had some really ridiculous billing issues with them in the first six months of our contract, so I didn't even broach the rebate issue until early this year.  The first, second, and third time I contacted them I just hit a wall.  They told me that I hadn't turned in the rebate form in time (even though they had sent it back to me with NO TIME to return it appropriately) and that there was nothing that they could do.  Each of these times I didn't have time to sit on the phone and go up each rung of the ladder for an hour and a half, so I had to let the issue drop.  In May, I finally got the time to sit and argue my way to someone who could actually do something, and this pleasant woman assured me that I would be receiving the full rebate applied to my bill for the next ten months.  Very Nice.  I thought I was done with their ridiculous billing and would finally be paying the price I'd agreed to pay in April 2007 when I signed up for the service.

Apparently she was a big fat liar.  They gave me the rebate...For Four Months.  Last month they billed me the full amount again.  Grrr... So today I got on the phone and explained my situation to like six different people, some of which told me that there was nothing they could do, some of which told me that I could have the rebate and a credit for last month applied to my next six bills; that doesn't really help much though because their customer service is so horrific that there is no way that I'm renewing my contract in October when it expires, so I won't have six more bills to apply the credit to.  The final guy that I talked to, when I told the six-more-months guy that I wanted to talk to someone who had the authority to actually just credit my damn account (or return my money to the freaking credit card) for the missing rebates, completely reversed the previous position and told me that on the call with the pleasant woman who promised me my money, she had told me that I was going to get three months of the rebate - as a courtesy.  But they gave me four months?  No.  She promised me my damn money and they record those calls.  So I told him I'd agree to give them two weeks to find the recording and get me my money back or I was putting a stop on the credit card payments for both August and September and take them to small claims court.  He didn't have much to say at that point; he agreed to investigate it and we left it at that.  I really hope he doesn't think that these are just idle threats.  I'm a real bitch at the moment and I'm not up for taking anybody's shit, especially this company's.  They've lied to me and given me the run around on a number of issues and made me miserable to myself and to those around me (poor BF).

So that was my fun day.  My health insurance still isn't active so I can't schedule half of the testing that I'm supposed to be have ASAP.  I want this crap done so that I can have the doctors at the Temple Lung Center report the results to SSDI and I can finally get the damn thing approved (not to mention the medical decisions that will be made based on my new chest CT, pulmonary function tests, blood gases, new six-minute walk test, and a meeting with a great gastroenterologist).  I also managed to get a meeting with someone at the Disability Services office at Temple U., so maybe I'll have some momentum toward getting certified to teach.  It really is a full time job.  Getting all of this bullshit scheduled this week and then going to all of the appointments over the next two weeks or so, talking to Social Security, talking to DARS at Temple, getting them the appropriate paper work and approvals.  

So I've stopped with the job search for now.  I figure that I'll be a shitty employee anyway and won't possibly be able to actually hold on to a job; I'm just going to wait until we know all of the info about the PAH, and the pulmonary fibrosis, and the mixed connective tissue disease.  So at some point in the next six months I should hopefully be on more knowledgable ground regarding my own body and be more in control of it and it's ability to work, or perhaps even student teach, though I still don't think I'll ever be able to work 7-3 five days a week, but we'll see what Temple's Disability Office can do for me before I rule that one out.  

It's weird to make the decision to make no decisions.  To just put life on hold.  It's incredibly stressful on my relationship with BF.  We've been having little ridiculous fights interspersed with deep talks about our future.  It's so hard to try to plan a future when you have no idea what the future holds.  And it's hard to work out this household crap still...the basic relationship crap...chores, sex, responsibility, getting our place running smoothly while I can't do more than ten minutes of housework without my heart rate shooting up into the 140's and my pulse o2 dropping into the 80's.  It sucks.  He hates that I can't just pick up the slack, I hate that he can't understand why I can't pick up the slack without resenting the hell out of me.  There's clean, folded laundry on every piece of furniture in our living room; the kitchen floor needs to be mopped; the coffee table is covered in crap that just doesn't have a home; the bathroom needs to be cleaned; we still haven't gotten all of the boxes unpacked from when we moved in here a year and a half ago.  It's frustrating.  Really Frustrating.  For both of us.  And I understand where he's coming from; I wouldn't want to come home from work to someone who has been home all day and see this. But we still have those nice long talks about buying a house, getting married, remodeling a house, having a child, which doesn't go very far, but when you make the decision to make no decisions then you really can't ask your partner to hypothesize about your future on a regular basis.  So I guess what I'm really saying is that I'm in a holding pattern.  I hope and pray that everything works out and I really think that they will...but getting through this holding pattern is just so hard.  I feel useless.  I feel like I've got nothing to offer.  It sucks, but there's hope.  And it is so definitely a full time job; even if I didn't have to deal with all of the doctors visits and assorted tasks that revolve around "SICK", I would still have to deal with the emotional roller coaster that comes along with not having any idea what life is going to be like in six months or a year or tomorrow for that matter.  

Geez I hate these bitchy posts.  I'm not miserable, but the good parts of my life are like a break from the stressful parts, so there's much less to write about.  We have great long visits and dinner with my dad and stepmom and the kids every feasible Sunday night.  I love them.  We spend the evening with BF's mom every Monday (or almost every Monday) and I really enjoy the time that we spend with her.  I read like a crazy person.  I sit around with my mom and BF whenever the mood strikes us and we all get along so well it's almost surreal.  I have joy.  The stress just seems to constantly overwhelm the joy.  That's what the ativan is for I guess...though I've been using it only very rarely, when things get overwhelming, when I feel like crawling into a hole and disappearing for...well at the time it usually feels like forever.

So thanks for reading.  I know I'm no fun right now.  I know that it must sound like I'm a spoiled child who just bitches and bitches and can't focus on the happiness in her life.  I'm really a generally pleasant person in reality; I'm excellent at putting on a happy face.  This is just my space to get it all out.  

[And I nearly forgot to mention how utterly enthused I am about my impending sibling!  A. is due in thirteen days, but has never gone to term so we're expecting a baby in the next week.  I really can't wait.  I am so happy about this baby now and I can't imagine how incredibly elated I'm going to be once I get to hold that tiny little person, cuddle it, sing to it, spend as much time as my dad and A. and BF will stand with it.  I have joy, I am far from miserable.  I just have to make that my mantra.]

Learning to Live as a "Disabled Person"

So my Nine Inch Nails tickets were a Mother's Day present. Not exactly traditional, but exactly me. BF got me general admission tickets; on the floor, no seats, giant mass of people in black makeup, chains, and spikes. A dream really. I've been aching to be in the pit at a Nails concert since I was twelve years old. Needless to say I was thrilled with the gift.

Two weeks later I was in the hospital getting my pulmonary hypertension diagnosis.

It's actually kind of odd, I don't often go to concerts, but in the three months following my hospitalization I had four to go to. Pearl Jam and Ani DiFranco weren't big concerns; I'd have a seat and my oxygen, so if I needed to (and I did) I could sit and recompose myself. General admission doesn't really allow you that option. When you've got people packed in on every side of you, there isn't even the option to go sit on the ground at the back of the floor.

At one GA concert (when I was a "normal" 17 year old), I was wearing knee high black boots that were made for calves that were just a bit slimmer than my own. I had gotten them tied, just barely, and had my awesome fishnets-miniskirt-army jacket-spiked collar-and (most importantly)-big black boots in place and I was feeling my oh-so-hot-shit 17 year old self...until the crowd closed in and it became clear that those big black boots were tied just a bit too tight, tight enough that they were cutting off my circulation. Limited blood flow to my brain and with the heat of the compressed crowd first made my vision start swimming, then everything that was insanely loud and close started to seem very muffled and distant. I elbowed my way out of the crowd and back to the bathrooms in time to pass out in a typically filthy bathroom stall. But then there was an easy fix, once I regained consciousness; untie the damn boots and relace them so that they weren't depriving me of oxygen. I rejoined the crowd shortly and had a great time.

This time, of course, everything was different. Floor tickets or not, the venue was not letting me down on the floor in a wheelchair...apparently that would make me a fire hazard. They did, however, accommodate me very well. The handicapped section was very close to the stage and though I didn't get that experience I really wanted, I got to see a great show from pretty great seats. I dismissed my brother, who had come with me, to go join the packed mass on the floor and he had a great time too.

What this brings me to are the absolutely awful accommodations that I encountered two days later at a certain amusement park in Allentown, PA.

BF, a friend of ours, and I visited that big theme park down in Orlando about a year and a half ago. We were actually able to visit all four of their amusement parks in three days because of their excellent wheelchair accommodations. At that point, my problem was only that I couldn't walk the long distances required to do even a small percentage of the parks, so BF sweetly wheeled me (often at breakneck speeds) through the parks and the setup and the staff were just so good; I can't even explain how pleasant they made our trip, how helpful and friendly they were, and how much I was blown away by how well they treat disabled people.

So maybe I was spoiled, but Sunday's amusement park experience was just atrocious, totally unacceptable. We waited in mine for tickets for half an hour, me in my wheelchair, BF pushing. Not a single sign of announcement or hint of an indication was made that there was a disability policy in place, let alone what that policy was and how restrictive it would be or how taken advantage of I would feel when they finally told me about it. After buying our tickets and going through the wheelchairs and strollers gate, being let in by a man in a wheelchair who also said nothing about their disability policy or what I needed to do to ride the rides, BF and I proceeded to walk the fifteen minutes across the Midway to the first roller coaster that we planned to ride. We walked up to the entrance and were simply stared at by the attendant. After a god thirty seconds he bluntly asked me "Where's your boarding pass?" What followed was one of the stupidest conversations, with the most long pauses that I've ever had. He didn't voluntarily tell me what a boarding pass was when I asked, he looked at me like I was stupid while I pried the information out of him. And what I got was that we had to return back to the park entrance and get a "boarding pass" from guest services.

So we trekked back to the beginning and waited in line behind several people complaining about various issues. When we finally got to talk to the sixteen year old manning the Guest Services, she asked me my name, condition, and went through the various issues that would keep me off of the ride because the first half of the boarding pass was really a waiver and an aknowledgement by the park that I had the physical capacity to ride the rides in the park. I had no problem with that and because I really only need the chair so that I don't get worn out, I wasn't restricted from riding anything. Even if I had been because of some issue, I think that that would be an acceptable policy that would keep both me and the park safe. It was the second part of the boarding pass that pissed me off, and it really does take quite a bit to really make me angry, but the combination of a total lack of customer service skills by anyone in the office, their inflexibility, and the restrictive nature of the policy all combined to really send me over the edge.

The process involved in using the "pass" entailed going to each ride that we wanted to go on, winding our way back through the meandering handicapped entrance, waiting for someone at the ride to notice our presence, again a college or high school student working a summer job that they don't really give a damn about, and once our presence was actually noticed, handing over the "pass". The disinterested attendant, and I use the term loosely because they were far from attentive, would then disappear into the little control room, guess at how long the other patrons were waiting, and give me back the pass with the name of the ride and the time that I could return to ride. I was instructed that I could only go to one ride to get a time or the previous time would be crossed off and I wouldn't be able to ride that coaster unless I went through the whole process again. When I asked what they expected me to do during this arbitrary amount of time that had been divined by an eighteen year old working a boring summer job, they simply told me that there are lots of other things to do in the park while I waited. Things like spending four dollars on a bottle of water, playing over priced carnival games, and generally just pouring more money down their gullet. That's where I really started to feel taken advantage of. How on earth did these people really think that these kids could guess at how much time it takes to get through the lines? I've been to far too many amusement parks where the front gate says you'll be waiting an hour and twenty minutes later you're walking off the ride. I didn't want these kids cutting my day short with bad guesses. And if they had even made it okay for me to go sign up for one more ride during the time I was waiting it may have been okay, but I either had to wind my way back out of the handicapped entrance, wait and then wind back through, or spend that time feeding their vendors money for overpriced crap. And to top that wonderful policy off, I was required to be back at the ride within five minutes of the time that they gave me or I'd loose my spot completely.

So I wasn't happy. I disagreed with the policy and I felt that they were seriously limiting the ability of disabled people to get the full value of their tickets. I told them that I'd already been at the park for nearly an hour and a half, hadn't ridden a single ride, didn't agree with the "boarding pass" policy and felt that I wasn't going to get the experience I'd paid for, so I just wanted a refund and I'd leave. Well apparently they have another, very inflexible policy, that simply states "No Refunds Under Any Conditions". When I asked for a supervisor, he simply restated the policy to me about nine times until I was really just pissed beyond pissed. He wasn't listening to anything I was saying an he was insisting that I couldn't speak to anyone who had any real authority because all of the managers were in a meeting. So I dug in. I told him the I was physically, not mentally disabled, that I understood the policy, but I was dissatisfied with the whole experience (a feeling that was getting more intense with every word he uttered) and that I wasn't going anywhere until he, or someone above him that was authorized to do so, gave me my money back. I also mentioned that it would be far easier to refund my ticket than to have to deal with an ADA attorney, at which point he walked away from the window and said he couldn't talk to me anymore if I was going to talk about lawyers; that's also when he called security ON A GIRL IN A WHEELCHAIR. I hadn't threatened to come back there and beat him with my oxygen tank, I had simply told him that I wasn't going anywhere until I got a refund. Security seemed to find his calling them laughable and the two guards milled around the office with nothing to do. They certainly couldn't kick me out, I hadn't done anything that was against their rules; I was just complaining. After arguing with him about his total inability to ask a single manager to leave the meeting for a moment to deal with the situation, I demanded the corporate office's number; there was no way I was givig in to this twenty something jerk that was smirking at me and not being the least bit apologetic that I, as a patron, was displeased with the park experience.

Calling corporate was the perfect move. I immediately and politely asked for everyone's boss when they got on the line, until I actually had someone with authority on the phone. She was still resistant, but I continued to dig in my heels and state my case in the most mature, polite, and still assertive terms possible. After a good ten minutes on the phone with her she agreed to call the office and instruct them to give BF and I a full refund. It took her another half hour, during which we just stayed in the tiny office, to make the call, but a very sweet, very apologetic woman did eventually come out of the office with a refund receipt and cash that covered the price of admission for both BF and I and the fee that we'd paid to park. I was so happy when it was finally over. The only unfortunate part was that the asinine supervisor that had argued with me for so long was nowhere to be found when I finally got what I had come for.

It was ridiculous. The whole stupid thing was ridiculous. Their park is so badly setup for people with disabilities, with huge hills and ride groupings that force you to spend half the day wheeling back and forth across the park. It's just not ADA friendly as far as I'm concerned and you can bet that I won't be returning unless their policies change and they seriously clean up their act and improve their staffing.

It's really strange for me to adjust to this whole new part of my identity. Wearing the oxygen, riding in the wheelchair; it's all very new and very alien just to see myself that...disabled. I'm getting used to it though, it doesn't bother me as much, but it still occasionally makes me feel that teenage "everyone's looking at me" complex, but being an adult, having studied psychology, being a social sciences freak, I know that that feeling is unwarranted. Sure I still get the occasional prolonged look from another adult who I can just write off as uninformed and not very polite. And there are the kids, but kids stare at people whether their wearing oxygen tubing or not. People just don't enforce the "it's not polite to stare" maxim with their children anymore, but they're kids, so it doesn't make me feel like a freak. It's just an adjustment I guess. Having to deal with "accommodations" and special policies and being conscious of my body and my movement to such a greater degree is weird and not easy, but just like everything in this topsy turvy new world of mine, I'm adjusting, figuring things out, feeling my way. I'm confident that I will get there. And I've already proven that I'm willing to accept this new me and stand up, not literally of course, for my right to be treated like an average capable person that just needs some slight help doing those average everyday things.

It Rocked!

Twelve years after falling in love with Trent Reznor, he still blows me away. The Nine Inch Nails concert rocked, to say the least, and I will say more, but for now I'm going to bed.

Sisterhood.

Sunday was my step-mom's baby shower.  She's terribly considerate; she stopped to have some private time with me to make sure that I wasn't upset about all of this, the shower, going through baby stuff, watching her get more and more pregnant everyday.  I was really touched; here she is, with a transverse breach baby that is bound to be enormous by now (my brother was a 9lb 8oz baby and I was 8lbs 9ozs, my dad is 6'5 and she's about 5'5), she was in the hospital last week with regular contractions and a highly elevated blood pressure, she's got four kids at home to manage while they're out of school for the summer, and she watched our little guy last Monday while I was in the hospital, but she still has the time, energy, and clarity of thought to be considerate about how all of this might be upsetting for me after the recent revelation that I won't be able to do the whole pregnancy thing.  It was really sweet.  Thankfully I could honestly answer that none of this is bothering me.  

I think that a big part of it is that I'm already head-over-heels in love with this baby.  It's a bizarre feeling and I can only imagine how much incredibly stronger that feeling is for a pregnant woman, but this has been "our" baby throughout A.'s pregnancy and it's kinda been burned into my mind that way.  I know that I will have virtually unfettered access to spend as much time with the little one as I want.  I know that my presence is not only welcome, but desired during her labor and the birth.  And I know that this baby is just going to bring so much joy to our newly formed family.

If this was one of my girlfriends that I had to watch grow bigger and talk about birth plans with I don't think I would be okay with it.  I would try.  I would want to be happy for her and want to be supportive, but it would hurt like hell.  There would be that It should be me feeling.    I feel robbed of those kicks in the ribs, the inability to breath normally, a smooshed bladder and all of the other wonders of pregnancy.  I already feel like some great big cosmic force has cheated me out of my right as a woman to be a life giving vessel.  Which is hard to feel because I really do believe that life is here to teach us lessons, to help us grow, to make us the people that we're supposed to be.  This is just a really shitty lesson and I don't get what all of this crap is teaching me.  To be a stronger person?  To be better in trying situations?  To cope with loss and grief better?  Sometimes I'd definitely take far less character if it meant that I could just be a normal 24 year old woman with normal 24 year old concerns.  I wish I was applying for jobs rather than disability.  I wish BF and I could fight about who's turn it is to take the house rather than whether or not it's fair for me to want to have a baby if I could die in a decade.  

Hmmm...this started out as a much more up beat post.  I was feeling elated.  I only have a few weeks left until this little person shows up and I get to see it dressed in all of the adorable little outfits that A. got at the shower on Sunday, that I get to gladly take it whenever she needs to deal with the kids, or say, take a nap and a shower?  I'm happy about this, really happy.  It's the sun that's broken through a bank of storm clouds.  It's a concrete reason for me to feel that life does in fact go on, stupid freaking disease ridden body or not.  So I'm clearly still torn about my feelings about the whole "barrenness" thing, but I am absolutely certain that I'm thrilled that A. is pregnant, that these two great parents are going to be doing it all over again, and that this new little life is coming into my life.  

In Which I Bitch About a Fever and Sign Over My Life.

As if I haven't been through enough in the last week, now I'm actually "normal" sick (as BF so elegantly put it).  

When I got home last night, after driving way too far to do some fruitless shopping and eat at a food court, I had a horrible headache.  Since they put me on lopressor to attempt, unsuccessfully, to keep my heart rate at a reasonable level (say 100 bpm or so), I've had a pretty constant, generally low-grade migraine.  I don't really think it's a good thing to fuck with someone's blood pressure when they have chronic migraines, but hey, I'm no third year resident.  Generally though, when the headaches get to the point where my whole head is pulsing and I truly wish it would just explode already, I can take my sleeping pills, pass out, and wake up with only a baseline headache - not horrible, not something I want to keep having, but not horrible.

But this morning my throbbing head woke me up at 6:30, along with a sore throat and chills.  I drug myself to the kitchen and sucked down a glass of ice water and then took my temperature.  My usually balmy 97.5 had rocketed up to 101.5.  Shitty.  I usually run a low-grade fever of around 99.5 or so when I'm having an autoimmune flare, but this, this is above and beyond and just fucking ridiculous after being in the hospital for four days without going over 100.

After taking four tylenol, my fever dropped down to 100.5.  I never get sick, like "normal" sick, but it seems that being "abnormal" sick has made the process easier.  I got myself some ice water, some toast, arranged the pillows just right and curled up with Stephen King's "Cell", which I'm reading for the second time and enjoying just as much as I did the first.  After a couple hours of reading, my eyelids got too heavy to make out the words and I gave in to the inevitability of sleep, waking up about six hours later.  The fever was back, well I should say the full-blown fever was back as it never actually went away. 

BF came home soon after and attempted to get me to eat something legitimate.  I refused, but he made me some cinnamon-sugar toast.  I don't know if that's legitimate food, but everything else sounded totally unappetizing.  So we sat around and watched TV and I tried to be comfortable on the couch.  Totally boring night.  The fever still keeps coming back.  I keep taking enough tylenol to keep it to a dull roar.  God, I just realized how terribly boring this post is.  No climax.  Rather repetitive.  Ah well...I guess "normal" sick isn't really much to talk about.

Alright, how about this little gem - I got a call from the hospital's billing department about two hours before I was discharged on Monday.  The voice at  the other end of the line identified herself and then tersely informed me that my health insurance had "termed" June 30th.  What?! I had to ask her to explain what the hell she meant as I had no idea what she meant by "termed".  Once she explained it, well, I really had nothing to say.  I was shocked and there were a million things running through my head.  First was how on earth was I going to pay for a hospital visit without health insurance.  Of course then there was the fact that I thought I knew that I had purchased a full year's worth of health insurance through my college last September.  But there's just something about someone dropping a bomb like that on you that makes everything that you know seem very uncertain.  Maybe my health insurance had expired when I ceased to be a student?  Maybe I just wasn't paying attention and had screwed up royally?  But then there were the prescriptions that I had filled during the last two months and the doctors appointments and the echocardiogram, ultrasound, gallbladder study...You get the point.  Thankfully everything is online now and I was able to easily get onto the IBX website and check out my policy.  I'm covered.  I don't know what kind of crack the billing department is smoking, but freaking out patients, making them think they're going to be responsible for thousands of dollars worth of hospital bills, not cool.  

It did turn out to be a blessing in disguise of sorts though.  I thought that my coverage was up on September 30th.  I'm lucky enough that the company that BF works for offers health coverage for domestic partners, so I can continue my coverage in a few easy steps, but I thought that I didn't have to think about it for another month.  Turns out my coverage is up August 31st and I have to deal with all of the details Right Now.  

In order to officially prove to the insurance company that we're "domestic partners" there actually have to be legal documents in place that tie us to one another.  Who knew?  We already have a lease together, so I spent some time this evening putting together a will, of which he is a beneficiary, and a durable power of attorney, so he can control all of my assets.  Yay!  Neither of these documents actually means anything as I have no assets, unless you count a seven year old Jetta that I won't actually own until next May, but that worth...well I try not to think about that.  So after a few signatures and a trip to the notary public on Monday I won't have to worry about my health insurance again ever, well hopefully.  

Well I had a simply wonderful week last week.  Sunday, Monday and Tuesday I was feeling a generalized sense of malaise and fatigue.  Wednesday I had to skip our weekly (or monthly, or bi-monthly, or whatever) board game night so that I could crash on the couch with my oxygen.  Thursday was much the same.  Thursday night I had to wear a pulse oximeter overnight to prove to my insurance company that it was actually necessary for me to have oxygen.  When I put the damn thing on it was already in the low  80's, (off oxygen) and when I woke up it was 79%.  That morning a rep from the oxygen company come over to complete the test, which included having me walk around with the pulse-ox on while on and off of the oxygen.  On oxygen it went up to the low 90's which is generally what I'm shooting for, but without the oxygen it stayed in the low-low-80s.  It also monitored my heartrate, which is supposed to be supressed by the lopressor that I take regularly.  Clearly it wasn't working because while walking around my apartment at a leisurely pace, on oxygen, my BPM went up to 157.  So I called my PH doc, who said that it could be nothing, or it could be lots of things and I needed to be seen in the ER.  I've heard that line so many times I almost expect it now.  

So I went to the ER where they found two infiltrates on CT that they dubbed "pneumonia" in the right and left lower lobes of my lungs and admitted me.  I got to my room at 2 am and then had to wait for the attending to come in and assess and admit me.  The one little boost to my night was that I got to show off the program that I have on my iPhone that keeps track of all of my medications and their dosages, so instead of having to rattle all of them off and try to remember which dosages go with each drugs, and then spell them out, I could just hand my phone over to the doc and let him go for it.  It seems like something so simple, but when you're on eighteen different medications - several of which the regular med-surg doc has never heard of, it really isn't.

So I got settled in that night.  I had my own room with a nice big bathroom with a shower in the new wing of the hospital and the bed was sublime, air that automatically reacted to pressure points.  BF and my brother spent the day hanging out with me all day Saturday.  My dad hung out for a bit that night and we got to talk about cord blood banking and the possibilities that my step-mom being pregnant presents.  My dad isn't much for the medical info, I'm not even really sure that he fully understands what's going on with my health right now other than the gravity of it.  So I explained as much as I can about the drugs that I'm on and the advances that are being made and the difference between embryonic, umbilical, and adult stem cells and the possibilities for a match with the new baby versus my younger brother versus a stranger.  We talked about the price, which doesn't seem to be an issue for them (though I know that things are tight right now and that it won't be an easy two grand to come by - I'm not going to worry about that though because I know that he would pay anything for my life and I love him to death for it).  So I've got to find out a bit more about getting that set up and making sure that A.'s midwife knows what she's doing when she collects the blood, otherwise I'll have the OB that'll be standing by do it, the last thing I need is for a mistake to screw all of this up.  So my dad left that night and at some point I got to sleep, thinking that I was going home Sunday afternoon on PO antibiotics (yes, even after the pulmonologist and the rheumatologist basically came out and said that it was not pneumonia, they still were pumping Levaquin into my vein.

Sunday I was feeling fine, as I had been the entire time.  As long as I wasn't up and walking around my heart rate was normal and my PO2 levels stayed in the low 90s.  However, I was having trouble with my IV again.  I have notoriously bad veings, hence the PICT line the last time I was admitted.  After 5 hours in the ER I made them take that one out because it was too painful.  The venipuncture team had to come to get a new vein; generally, nurses can't find them.  Saturday night when it came time for my infusion of antibiotics, we had to move the new one.  I had tried not to bitch about it, but it had been sore throughout the day and when the nurse got a look at it and the infiltrate that had started to develop, she pulled it right away.  It sucked, but she got a new, smaller one in on the first try (apparently I got the penthouse suite, with the best nurses and the best rooms...lucky me.)  The next morning I had to get a chest x-ray to see if anything had changed.  When I got back to my room, anticipating having to have this new IV, which was starting to hurt and to radiate heat, replaced yet again.  Luckily, the nurse had managed to get the docs to transfer both of the IV meds that I was taking to pills, so I got to just get rid of the IV right then and there.  

So Sunday I got to see BF and the little guy twice, once in the early afternoon and once before bed with Dad, A., and my little brothers and sister; it was quite the crowded room and I loved it.  It makes it nicer to be stuck in bed when you're surrounded by people that you love.  The little man came in scrubs, which was a big hit with everyone there.  And he was pretty good while he was there too.  A. has a 5-year old and he and the little man are really starting to play together pretty nicely.  They kept me Sunday to see how I was reacting to the steroids, but didn't take another x-ray before I left on Monday, so I really don't see why I couldn't have gone home on Saturday...They just seem to have no sense of urgency when it comes to that shit.

Anyway I was glad to be home yesterday.  I can't understand what changed that made them release me, but whatever, they did.  The steroids make me want to pull my hair out with the goddamn hot flashes, but just sitting on the grass with the kids running around and a little fuzzyheaded man in my lap really did a lot for my mood.  We had dinner with my dad and the fam and got to just chill for the evening.  I was wiped out today, so LM and I colored and watched Oswald (his absolute favorite) and then he napped and I fell asleep for the better part of the rest of the night.  LM woke me up for a bit to cuddle after his dad came home and before he left for his mommas, then they left and I crashed again.  BF woke me up with shrimp marinara and we spent the rest of the night relaxing on the couch.  

Tomorrow we get to go shopping for baby stuff for A.'s shower next weekend.  It's getting so close and I'm so excited.  I'm also nervous that this baby is going to dredge up a lot of that "I really want to have a baby of my own" stuff.  It's going to be really bittersweet.  Holding that little angle in my arms.  Having it sleep on my chest.  Getting A. to let me hold it as much as I want.  Wanting it to really be my baby, not "our" baby.  I love that they're as open to us being involved as they are, I don't know what I would do if they weren't.  Cry probably.  But I'm going to cry either way.  It's just so unfair...everytime I think that I've gotten on top of my feelings about it, it comes back and bites me in the ass.  But as I said before, today is better than yesterday and while I know that this will not go away, I know that I can do as much as I can to make myself as healthy as I can and convince BF (who will hopefully have graduated to a more legal title by then) that I can handle taking care of a newborn and a toddler and a child and all of that.  

Disability still hasn't given me an answer either.  It's just three months now though and I expect that within the next month I should have their initial decision.  That's going to change things for the better.  Everyone I talk to sees no reason that they could reject my claim at this point.  I can't work.  I have a job interview on Thursday, but I think I'm going to cancel it.  It's too far away, it's too inflexible, I just don't have the nerve to commit to something that I feel I'm going to fail at.  Feeling unreliable is one of the worst feelings about this whole thing.  We need to work.  We need to feel productive, we need the social aspects.  We are meant to work.  I just need to figure out how to do that.  I can watch LM and I feel like I'm getting better at it.  It's weird, early childhood education is the last thing that I ever saw myself doing, but now that's my only real job and I take it like a job.  Of course I love him and that helps, but I research different activities that we can do and color big letters so that he's constantly surrounded by the alphabet...I'm trying to teach him the sounds that each letter makes and also trying to boost his fine motor skills so that we can start writing them, but now he needs to master being much more exact with the control he has over his lines.  Today we discovered that markers work much better, because he doesn't have to push down on them to see the results...He really seemed to like them.

Anyway, I've hit on like five different topics here.  Part of that are the sleeping pills, part is the painkillers, and of course the major part is that I've got a million things on my mind and when I start writing they start spilling out of my head.  So I hope they're coherent and I hope that just maybe some of them are entertaining, well written, etc.  But really, this is for me.  I need to get all of this crap out of my head and I really appreciate other peoples input.  Perspective is always appreciated, as long as it is done in a positive way...Ehat did our kindergarten teachers used to say? Constructive Criticism!

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! :)