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.



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! :)