I'm really not okay right now.

Physically, I'm a wreck. I can't keep my joints in to save my life. I'm on an on-and-off liquid diet, depending on when my jaw wants to cooperate. Just writing my notes and homework is killing my fingers, hand, and shoulder, all of which are slipping out over seemingly nothing. I'm having a hard time keeping up with things, and I'm only taking two classes. The pain is rapidly cycling between not-too-bad and absurdly-beyond-bearable. To top it off, I'm sick as shit with double ear and sinus infections. The past 5 days have consisted of high fever, puking, feeling like my face is going to explode, dizziness that would cripple the most graceful creature, and a perpetual taste of infected snot. So now I'm even farther behind because I've missed two days of work and class. Fuck.

Emotionally, I'm even worse. My disability has had be beyond depressed lately. In 6.5 hours, I go for one of the most monumental appointments of my entire life: a trip to the Ehlers-Danlos genetic specialist. In a 2-hour appointment, I'll be handed my life-long prognosis. I'm so fucking scared. And, to top it off, Andrew and I are fighting. Of course.

I'm at my wits' end with him. No, I'm still not okay with you talking to Lindsay. I don't like or respect her. She has not contributed to one ounce of good in your life or mine. She (along with your shitty behavior) had me completely on-edge for the first half of our relationship. Once you finally took her off that pedestal, you lied to me about talking to her. You were a two-faced asshole for months and months, talking to her behind my back while calling her an endless list of derogatory names to my face. Once you finally picked a side and admitted to lying to me, you blamed everything on me: my insecurities are my reasons for disliking her, my unwarranted lack of trust in you keeps me from allowing you to talk to her, my unwillingness to compromise on the issue is why you had to lie to me. No. I admit that I have insecurities. I admit that I've been less than happy about having to reach a compromise. But I've been the one pushing for compromise. I've been the one admitting my faults. Take a good, long look in the mirror tell me you're innocent. I'm so sick of this entire relationship being on your terms. You get to talk to Lindsay. You had the final say in the apartment issue. You determined when we talked while you were in California. And when I actually put my foot down and said that I needed to talk to you at an earlier time and started going to bed on my own schedule, you got angry with me, said I'm being intentionally distant. Then you tell me to be more assertive. I'm sick of this entire relationship being on your schedule, and I'm sick of feeling like the bad guy. Your reasons for wanting to talk to her are stupid. It's not because you care about her or are curious about her. It's not because you want a friendship. It's because keeping contact with an ex helps keep your faith in love, that love is some eternal bond that means you'll always care about a person. Bullshit. I haven't talked to Pat in forever. Does that mean I never loved him? Or that my definition of love is twisted? Love means eternal care, not eternal contact. And I understand that, on principal, I shouldn't dictate who you talk to. I completely agree with that. However, I believe that there are extenuating circumstances, like talking to your ex when your past with her has been nothing but shady. I just wish you didn't care about her, at all. I wish she meant so little to you that you wouldn't bother returning the IMs or texts she sends you. I wish you'd listen to me and put me first for once. After two years, I feel you owe me that much.

I'm not going to lie, the disability thing is really fucking with my head. I guess I'll find out how extreme everything is tomorrow, but just knowing that I'll be battling this the rest of my life makes me feel like less of a person. I feel guilty for being with Andrew when he had no clue that things were this bad. There are other repercussions of EDS aside from my constant dislocations which could have serious consequences to a committed relationship, but I'll go into that more when I have the official prognosis tomorrow.

When I argued that Andrew does a shitty job of expressing his love for me, he cited that standing by me despite my diagnosis and the possible repercussions should show his devotion. I can't remember the last time I've felt so horribly ambivalent about a statement. Part of me loves this, thinks he's absolutely right, that it takes a lot to stand by a cripple. Part of me wants to tear his head off. First, it shouldn't take a disability for you to prove that you're devoted. Second, and more importantly, what makes you think you deserve some gold fucking star for dating a cripple? If you think it's hard to stand beside me, try being me. My body is not my fault. Yes, the insecurities and short-tempered demeanor that come with it are my fault. But here's the difference: I've stayed with you despite all of the mistakes you've willingly made in this relationship, and you're staying with me despite something that is entirely out of my control. Which requires more inner strength?

I can't decide if I'm just overly emotional because of everything else going on or if everything I'm upset about is justified. It's 3:13 a.m. I have to be up at 6 to go to U of M hospital. I've spent the past hour and a half venting to some amazing friends, new and old. They vented, too. It was a very therapeutic night. Everyone I talked to agreed that I'm completely in the right. Even better, I listened to relationship stories that were no better than mine, people who are making similar decisions and staying in their relationships even if it may not seem like the healthiest decision. I feel more secure. Regardless of how this turns out, I know I won't be alone in my decision. Living in this house with these people is, surprisingly, the best decision I've made in a long time.

This is going to be the longest post I've ever written. I should have periodically updated during the program, but the whole thing was such a whirlwind. The Chronic Pain Rehabilitation Program (CPRP) completely changed my life. It was the most physically, mentally, and emotionally draining experience of my life to date. I don't particularly expect people to read this novel, but I wanted to write it for myself.

( Here goes... )

Holy.shit.

So I've officially been in rehab for two days. The Chronic Pain Rehabilitation Program (CPRP) at the Cleveland Clinic. President Obama was here today, but things were all barricaded. Anywho, CPRP is not at all what I envisioned it'd be. I thought it'd be a lot more physical therapy and a lot less...rehab-like. It's definitely rehab. Most of the people here are in the Chemically Dependent (CD) track. The CD group has to go through a 12-step program and are weaned off of all medication. There are about 15 of us total, CD and non-CD. I'm obviously non-CD since I've taken Vicodin once in the past two months. The program takes up most of my day; I leave the hotel (which is just off the Clinic's campus) at 7:15 and get back just after 6 Monday through Friday. The program mixes physical therapy, occupational therapy, group and individual psychotherapy, biofeedback, coping skills training, and pain management medication.

After 7 years of PT, I didn't have high hopes for things, but I can already feel a slight improvement. And occupational therapy (OT) taught me today that using a lumbar pillow drastically reduces my pain while driving and sitting in some chairs. Something about the way it presses on the spine and alters your alignment. It's amazing. The psychiatrists feel the need to dig out every skeleton in my closet, which I'm really not okay with, but since my pain has been around for my entire conscious life, most of my memories are intertwined with my physical pain. I hate crying in front of people. I already have most of the "coping skills" they teach mastered (i.e. keeping busy to distract yourself from the pain, deep breathing to get through the worst of it, etc.). It's the only way I've been able to steer away from a Vicodin addiction, and seeing these guys going through withdrawal is making me very grateful for making the decisions I have. They've started me on Cymbalta and Neurontin, neuropathic/non-opioid pain medicines that double as antidepressants. Though they make me nauseous, I'm thankful for them. I am a little concerned because dependence can occur on these meds, nowhere near the severity of opioid dependence, but it still makes me hesitant. And you cannot take these meds while pregnant or trying for pregnancy, which I don't like. Regardless, they should help take the edge off for now without knocking me out or getting me hooked.

I'm meeting a lot of interesting people here, too. Some I think are full of shit. If you walk out of here "cured" after the 3-week program, you weren't fucking disabled. But a fair chunk of these people definitely have it worse than I do, and it makes me grateful that I'm not paralyzed or blind or have a high spinal chord injury that has fucked up my entire nervous system. I can still grip a fork to eat. And I can stand up on my own. I'm lucky. The CPRP emphasizes the importance of being a person rather than a patient. Most of us with chronic pain become obsessed with it and only see ourselves as a disability. When we first meet up, we instantly exchange stories about surgeries, doctors, misdiagnoses, and our years of pain and being treated as some crazy outsider. I feel normal here, which is a new feeling for me. However, they strongly discourage us from talking about our pain with each other to keep us from dwelling on it. "Pain" is a 4-letter word in the Clinic, and it isn't to be used. They also don't respond to our "pain behavior", so if I'm deep breathing or rubbing my leg or crying or whatever because of the pain, they won't acknowledge it. Which is weird. They have amazing poker faces, but the staff is amazing, and everyone is super laid back and has an awesome sense of humor.

Of course, we can't help but be curious and ask each other about our conditions when we're away from the staff, namely in the cafeteria for lunch. As part of my "initiation" to the lunch table, I was asked about my pain and medical history. After I gave them the brief overview and had to shamefully admit that no one knows what's wrong and that I have no diagnosis, one woman piped up and asked me if I had a series of other strange symptoms. I had all of them. She suggested I look up the genetic condition Ehlers-Danlos Syndrome. She has it. I'd seen it before on Discovery Health Channel, but didn't think it applied to me. When I got back to my hotel room today, I looked it up. There are 6 types of Ehlers-Danlos. Unfortunately, that poor woman has the one type that shortens your life-span, Type 4. I looked through all of the symptom lists for each Type, and completely froze after reading the Type 3 description. Type 3 is called Hypermobility Type. It is characterized by hypermobile joints, frequent dislocations and subluxations, flat feet, dental crowding, easy bruising, muscle weakness (even moreso in cold), early onset of osteoarthritis, and cardiac effects, namely mitral valve prolapse. All of my joints are hypermobile. I've dislocated or subluxed nearly every major joint. I have horribly flat feet. The whole reason I got braces was from dental crowding, and they've recrowded since my braces have been removed. My yellow arm from having blood drawn today is a demonstration of my easy bruising. I have chronic muscle weakness, which is why I've needed years of PT, and it's definitely worse in winter. I was diagnosed with osteoarthritis when I was 11. And I was diagnosed with mitral valve prolapse in high school. I fit every symptom to a T. Never have I ever experienced this, and I've spent the past 12 years searching like crazy, looking up everything I could think of. And the pain this woman experiences sounds just like mine.

Now I just need an official diagnosis. There are no real tests for this genetic condition, so it's diagnosed via medical history and observation. If I could leave here with a diagnosis, I could go home with closure, and that would be the biggest step toward recovery I've ever had. The good news: Type 4 Ehlers-Danlos does not affect life-span and isn't seriously degenerative, so I wouldn't get much worse. The bad news: It's associated with chronic pain (which I obviously have) and there is no real treatment or cure. The best I can do is keep breathing, keep exercising to combat the muscle weakness which accentuates my pain, and live with it. But I honestly think I could live with this pain as long as I knew for sure that it wasn't life- or limb-threatening, that I'll live a full life, and that I've done everything I could to minimize it. I need a diagnosis to close this 12-year chapter in my life. I'm sick of playing detective.

Life is...crazy. But I think it's starting to look up.

Per Jackie's request, I'll divulge a little more about my trip to California, though most of it is evident in the pictures I put up on Facebook. :)

Seeing Andrew was beyond phenomenal, and I could've stayed curled up in bed all day with him. But we did get out of the apartment and see some stuff. We went to downtown San Francisco, or tried to, the day before the 4th of July, but everything we so packed and we both hate people/crowds, so we ended up leaving and revisiting the city the following weekend. There, we went to Fisherman's Wharf which has a bunch of shopping, restaurants, museums, and other tourist-y attractions. And we got each new rings from an Irish shop since Andrew lost the one I got him for our anniversary back in November. As much as I usually hate tourist-y things, the day was actually really nice.

There were a lot of things that we tried to do that we just couldn't. And some things that we could've done that we simply chose not to. Our first trip to San Fran flopped, as did our trips to Santa Cruz and the San Francisco Botanical Gardens, all primarily because the places were so absurdly busy that after at least 30 minutes of searching for parking we still couldn't find a single space. California is disgusting overcrowded; houses are nearly on top of each other, and the roads are packed like our rush-hour at all times. We also wanted to go to places like Sequoia or Yellowstone National Parks since we're both more the outdoors-y type people, but we knew that my knee wouldn't allow it, which broke my heart.

More importantly, the things we did do were fantastic. Our belated trip downtown was a lot of fun. We also strolled around downtown San Mateo. We were able to go to the bar together for the first time since he turned 21 in June, and we went to this brewery and pizzeria with the best pizza and beer I've ever had. So we went a second time. :) We played through Resident Evil 5 together, which I've been dying to play since its release. Nerdy, I know. We went for a mini-hike through Muir Woods National Park and were blown away by the mammoth redwoods, even though they're supposedly not half as cool as Sequoia. Still awesome. We spent a few days just driving around (since the jerk has a Mustang for the summer), primarily driving down Highway 1 which parallels the ocean, hitting up every beach we could. I'd never seen the Pacific before and had only gotten a glimpse of ocean once before (in New York two years ago), so overlooking the water for the week took my breath away. The scenery driving down some highways was more beautiful than anything I've witnessed even in Michigan's secluded areas. That's how most of the trip went: we just drove, and stopped at whatever seemed interesting. Spur-of-the-moment. Hitting up little family shops and fruit stands. Beach-hopping even though it was never more than 75 degrees. It was amazing.

God, I miss him.

And now I'm so nervous for my admission to Cleveland Clinic on Tuesday that I'm already losing sleep over it. But I'll write more about that later.

I wish I could've stayed in California all summer snuggled up with the love of my life. Being in Michigan isn't the problem - it's being here without him. I already hate being here, and I've been back home for an hour.

I'm going to California today, and I've never been more excited for anything.

So I suppose I have a lot to update on. Primarily medical updates.

I'm sure you're all beyond sick of hearing about my leg. Trust me, I'm sick of dealing with it. I'm having a nearly impossible time holding my desk job because the drive to and from work kills my leg. Oh, and sitting in a chair hurts. And laying down hurts. And sleeping hurts. And standing hurts. And walking hurts the worst. So I basically have no relief from the pain. I started seeing a neurologist - who, by the way, is the coolest, black, female neurosurgeon to ever live - and though I think she's an awesome person and a great doctor, I don't think the problem is neurological. I've been on neuropathic pain medicine for a few weeks, and it hasn't helped at all. I also had an EMG this morning, and after being shocked and poked with electric needles for half an hour, the doctor blatantly told me that there's no neuromuscular reason for my pain. I drove 8 hours round-trip to Cleveland Clinic two weeks ago only to hear, "Whelp, all I can tell you is that you don't need a knee replacement." Well, fuck, if that's what it takes to work in one of the best diagnostic hospitals in the country - reading a single x-ray - then give me my M.D.! That was a disappointing waste of time. Oh yeah, and then my leg hurt so bad after his exam that I collapsed in the lobby on the way out. My actual surgeon has no fucking clue what's wrong anymore and is just taking a stab in the dark by suggesting he break, rotate, and plate my femur. According to two (supposedly) good orthopedic surgeons, there's no orthopedic reason for my pain. And apparently, it's not neurological, either. Well if it isn't the ligaments, muscles, bones, OR nerves, then what the fuck is it?! Seriously CANNOT handle this anymore. I want my goddamn life back.

On a happier note, I'm doing something for myself next week. Some of you may not be happy or supportive about it, and I don't care. I've been made fun of for most of my adolescent and adult life about having no boobs. What you don't know is that I literally don't have boobs - I have tuberous breast deformity, meaning I entirely lack breast tissue, making them concave. There's no fix or cure or treatment or anything, and no amount of weight gain has or will affect my chest size because I simply do not have the tissue. I've been wearing hyper-padded bras AND special inserts for as long as you've known me. I already lose a lot of femininity to my limp, scars, cane, etc., and I'm finally financially stable enough to afford it: I'm having breast augmentation. No, I'm not getting Pam Anderson boobs. I'm just ready to do something for myself and actually be able to wear a standard bra or a fitted shirt. My surgery is on Wednesday. My parents have been beyond supportive, and I even got up the balls to tell my boss/boyfriend's mother who's a conservative CPA. I feel I have nothing to be ashamed of, and I'm super duper excited for it. Maybe it'll make me feel better since I've been so upset about my leg lately.

P.S. - I miss my boyfriend. A lot. But I'm going to visit him in California on July 1st, and the day can't come fast enough.

I'm so proud of Andrew, but I'm having a really hard time with him being in California, and he's only been gone 3 days. 3 down, 109 to go...

It doesn't help that I work for his mother, and she's a partial owner of the company, so her/his last name is on everything. And with the time difference, he doesn't get off work 'til 9 p.m. my time, we can't use night minutes on our cell phones until midnight my time, and I have to be up at 5:30 a.m. for work on weekdays.

Fuck this game. Hard.

Haven't updated in a while. Figured I should.

Got my final grades in (like, a week after graduation) and earned my 4.0. So all goals achieved. :) I'm starting to look forward to grad school in Fall already, even if it's only at Eastern. Not looking forward to the GRE again, though, but I've begun preparing all over again and have 6 months to boost my confidence.

I never thought I'd say it, but I really like being back home. I finally have a family, for the first time in well over a decade, and it's beyond awesome. I've taken the past two weeks to just relax and do what I want. I've spent some time with Andrew, played video games (finally), and drew a picture. Honestly, this drawing is my all-time favorite. The pictures can't do it justice. It's an 8.5x11, and the amount of detail I put into it is a little ridiculous. It looks like a black-and-white photograph, which is exactly what I was going for. The patience paid off.



The photograph inevitably washes out some detail, but the scanner pretty much destroys the integrity of a drawing, so this is better than nothing.

Andrew and I are...I don't know. Very roller-coaster-esque lately. Some days are amazing. Most days I want to wring his neck. All those little faults that I could ignore in the early stages of a relationship are painfully obvious now a year and a half later. I'm hoping his internship and our temporary long-distance status will help us rekindle the romance. Absence makes the heart grow fonder, right?

I hate when I feel insecure about our relationship. I always end up having really bad/awkward dreams. I'm so goddamn insecure.

I have a summer job that I just started today. Andrew's mom hired me to work full-time for the summer. She's a CPA, so I'm helping out around the office, filing and filling out the bullshit paperwork that would be a waste of time for the salary employees to do. It's not a bad gig. 10-hour days staring at a computer screen are a little harsh when you aren't used to them, but it's $11/hour , 40 hours/week, sitting in an air-conditioned room. Hard to complain, though my knee is already finding reasons to be bitchy.

I've decided to start trying to look more feminine in an attempt to boost my self-esteem. I had to buy work clothes since I owned nothing business-casual, and I bought girly stuff that could reasonably be worn with jeans. And I've been wearing makeup. It's strange, but I think it's helping.

My summer quest: get a diagnosis for my leg. After 12 years, 14 leg braces, a dozen steroid injections, 6 years of physical therapy, every diagnostic scan known to mankind, 5 surgeries, and several consultations, there is still no diagnosis to explain the excruciating, debilitating pain in my right leg. I need to reclaim my leg and my life. I'm going to Cleveland Clinic a week from Friday, ranked #3 in the country for orthopaedics. Hospital #1 doesn't take my insurance and is in NYC (a.k.a. hella expensive) and Hospital #2 - Mayo Clinic - won't see me for at least 3-6 months because I had "surgery". I had a complete meltdown upon hearing this. I really, really wanted to go to Mayo Clinic, and I didn't fucking have surgery. I was awake for the entire "procedure". I was given a shot of novocaine to "numb" the skin (which is already permanently numb from nerve damage from previous surgeries), then he pumped a little water in there is help create some extra space as he stuck a small camera in my leg to look around. He scraped my bones and pulled on my tendons without me having any pain medication or anesthesia so I could feel if he was hitting the source of my pain. It was the most painful ordeal of my entire life. I screamed on the operating table for an hour in sheer agony, and he found absolutely nothing wrong. Biggest waste of time and pain. And now, because of that, I can't go to the one place I wanted to until August, which is far too late for them to actually act if they find something wrong since school starts up again in September. I'm still devastated by this, and I fought tooth and nail to get them to reverse the decision. No luck. I might choke Teitge when I go for my follow-up appointment on Friday. It will likely be the last time I see him.

Wow, this is a novel. Sorry, guys. Bed time for now. Have to be up at 5:30 again for work.

By Sunday, I will have:

- ditched the lease on my Ann Arbor apartment for Fall
- found a new place to live in Ypsi
- rejected/deferred my acceptance (and scholarship) to U of M
- been accepted into EMU's math master's program
- gotten a GA spot in the Math Department
- taken 3 final exams
- finished 2 problem sets for Dr. J's class
- finished my thesis
- gone to 2 birthday parties
- graduated with my bachelor's in math with a 4.0 cumulative GPA and double/highest honors, completed within 7 semesters.

This week - and, in general, my life - is a whirlwind.