Feeling Abled While Disabled

So, as I’ve stated, I’m out of work on disability. My doctor has put in that she feels I’ll be set to go back as of October, well, that’s what she told the state. My place of employment is sort of wondering if I’m coming back, and when. So am I. I have days where I feel like I could be doing something, and other days when I feel like the walk from the bedroom to the living room is just too much for me to handle. With all of that said, it’s hard sometimes to really know what I’m supposed to do with my life. Yes my life.

I’m finishing my M.S. right now, and because of getting sick, I’m not going to be done until February when I was slated to finishing in November. Fine. Whatever. EXCEPT…my next round of infusions (if these infusions worked) will be sometime in December/January.  December would suck, I have a class on campus that month. January could work, except, I’m working on my thesis January-February. I’ll be in bed anyhow, so it’s not unacceptable, but it’s annoying, especially when you consider she’s telling the state I’ll be okay by October, but I’ll be having another round of treatments that pretty much kill me for 4-6 weeks in December.

If the state of California was giving me a livable amount for disability, and my alimony remained as it stands, then I could, realistically, focus on school, and not work until after I’d finished my degree. That would be the dream, kind of.

See, I’m not someone who likes not working. I’ve always worked. I’m also not someone who likes GI bleeding, fainting off the toilet, and having to explain to maintenance why the seat is not attached, the toilet paper holder is not attached, and to my guy why I have a bruise the size of an apple on my hip. All these things…they suck. They’re also my reality. I don’t want to be disabled, but I also don’t want to keep pushing myself to be normal when all that does is prove that I have limitations.

There is this inherent shame around being on disability when you go out and do anything enjoyable. I went to a foot reflexology spa, and was crucified for it. A few people from work found out I’d gone out, and the blowback was enormous. It’s as if being disabled means you have to be 100% bed ridden, at all times…but that’s not really how it works. If anything, putting my life on hold simply because my body has decided to forsake me, would make me more disabled, because I’d sink into a depression even worse than the one I already find myself in.

I wear makeup to cover the healing facial lesions, and acne, from all the steroids. I smile when I’m in pain. I drink way too much caffeine to compensate for the overwhelming exhaustion that plagues me. I contemplate going to bed at 6pm, because I’m tired, and I know if I wait I’ll just be up until 2am. I’ll miss my window.

Everything is complicated when you have a chronic illness. When you have something most people haven’t heard of, it’s more complicated. I have to take time explaining the disease, and then explaining how it impacts me. Dating? I’m glad I have the guy, for now, for however long whatever it is we’re doing lasts. He gets it, but other people haven’t. They Google Behcet’s and think I’ll be some ulcerated being. They assume my genitals are destroyed when that’s not how it works.

Worse…people assume they know me, and how I feel, based on that one conversation and that one diagnosis.

I am more than the sum of my symptoms, but at the same time I need people to consider all of who I am, and my symptoms, when they are deciding if they want to be my friend, romantic partner, or anything else in my life.

I find out Tuesday if the Rituxan worked. My body is exhausted and I know a lot of it is building up my stamina after so much bed rest, but still…some days I have way more energy than others. If I had to work today, I couldn’t. Yesterday I could have. It’s weird, it’s unpredictable, and it’s why I’m collecting my sad $200 per month disability checks.

You know what else sucks? Wanting so much more. I want to work 40 hours in a lab and love my life and job. I want to be something more than what I am right now. I want to believe someone could love me for who I am, and want to be with me long term, but I don’t ever see that happening. I want to feel deserving of love instead of like I’m a liability. I want energy to make friends, and go to events, and even though I’ll always be introverted, commit to something, like trivia nights, or a bowling league.

Instead I sit on my couch. Destroyed from walking 3 blocks in 90 degree weather. Wanting to go see Comic Con craziness, but accepting that I’ll only make that walk one time, and it’s not today, because I have friends I may meet up with tomorrow. I also sit here, contemplating how much Web Cam models make, and thinking about toning up and doing it, because I can’t live off what I’m currently making.

That is life. That is my reality. That is my aggravating and pathetic existence…for now. I have to hope it gets better, that I’ll get better. 

Feeling Abled While Disabled

I Shat in the Tub


Okay, so we discontinued the azathioprine after five miserable days of torture. I went to urgent care the day after and my pancreatic enzymes were just barely within normal range, which leads me to believe I did have pancreatitis and I just powered through it like a moron because that’s what I do. Within 48 hours of stopping, I felt a ton better. Then something strange happened.

I woke up one day, and I was hungry.

I ate normally that day, and the next, and then texted a friend because I couldn’t stop pooping. I’d had some issues with the azathioprine, it was like almost having diarrhea, but solid, but burning and painful. Now I was having NORMAL bowel movements, only I was having them like 2-3 times a day. She laughed and pointed out I was eating more, and that as I ate regularly, my body would regulate, and I’d join the land of the normal people, who poop once or twice a day.

This led to a momentary panic. See, the guy I’m seeing? We’ve made it 10 months without him ever being around when I’ve had a bowel movement. We’ve spent literally 2-3 nights together, and I haven’t had one, because I wasn’t hungry, and I wasn’t eating. All of a sudden my predictable constipation was gone. What was I going to do?

I did a stupid stupid thing.

The bowel movements were coming way too often, and I told myself if I took an Imodium, they would slow down. I wasn’t having diarrhea, but honestly, I shouldn’t have been going that often. Instead of letting my body figure out that it was okay to slow down the digestion train, I tried to coax it into behaving normally.

I saw the guy 2 times on Thursday but didn’t spend the night because he had plans. I ended up spending the night Saturday because we were going to do something, but it fell through. Now, on Thursday, I didn’t take meds, I just timed it so I saw him after going. Saturday was a different situation, so I went ahead and I took medication. I regretted it. I had a bowel movement Saturday, but it was painful and small. I was still eating normally, but made a second mistake I stopped eating as much. I also made a third mistake, and let myself get dehydrated.

Sunday I was depressed. I’d left the guys house on awkward terms, and my Saturday had been depressing. I walked around for hours, and just couldn’t shake the depression. I’d been forced to eat a pathetic breakfast, and then I’d walked for hours without more than dry cereal and a few sips of water. Later I ended up at the guys place, after admitting I was seriously depressed and didn’t want to be alone, but there was a three hour gap between him saying I could come over and actually going over to his place because he had some things to finish. I was so exhausted I passed out without even taking my meds, and woke up to take them, and offered to leave but he said he could stay. I woke up with horrible stomach pains, but hung around for an hour or so. (Yes we had sex, but it was kind of awkward to be honest. I got the feeling he didn’t really want to, and I was in the mood, but could have handled it myself when I got home, I just didn’t like leaving him hanging since we hadn’t fooled around the night before given the fact I’d passed out once he held me.)

So here I am, at my apartment, and I go to poop, and realize immediately I’m in trouble. Some stool comes out, but there is more, and it’s stuck. I know I’m impacted, and the question is, how bad is it? There have been times before when it’s just a painful bowel movement that takes a while, and there have been times I need to bust out the gloves and Vaseline. This was probably something better saved for a hospital, but I knew they wouldn’t sedate me because they refused to sedate me the last time. I thought about my walk yesterday an realized I hadn’t felt any bowel movements at all. Last night at the guy’s my lower intestines had kicked in like gangbusters out of nowhere. It was almost painful how hard they contracted. I realized that this was my body turning on and off because I’d reacted to depression and stress with not eating enough and walking around dehydrated.

It took several hours of screaming to fix the situation. I have 4 towels in my bathroom with poop on them, at least 8 pairs of disposable gloves, and there is vaseline on so many surfaces. For all the spoonies out there: I shat in my tub.

I shat in my tub.

I had read that a hot Epsom salt bath would help, and it did, but the cramps were so severe that I just couldn’t move, and little rabbit pebble poops, came out, in my tub.

This on top of the leakage I had going on around the blockage, it was too much. I sat down on the toilet, taking in the crap covered wreckage of my glorious bathroom, and sobbed. It’s late, but I have to clean it before I go to bed. I did eventually poop, and it was horrific. This just drives me the reality that I need a nutritionist and a gastroenterologist. The guy had concern when I told him I was sick today, but I didn’t elaborate. If we are not boyfriend and girlfriend, and there is no level of commitment, you do not get to know that I shat in my tub…and that I leaked fecal matter all over my bathroom.

There was one point when I was curled up fetal position on something that didn’t have shit on it, and I realized that even if we were serious, if he and I lived together, or he’d been over when this had hit, I’d have sent him away. There are some lines that just can’t be crossed, and I have to say shitting all over the bathroom may just be mine.

“Yes dear?”
“Can you go see a movie or something?”
“I’ve shat in the tub.”

I Shat in the Tub

Feeling Useless, and Calling Out Fakers

So my doctor has decided that the Azathioprine needs to stay in rotation, but we’ve cut me down to 25mg for a week, then increasing to 50mg after that…if I’ve tolerated the 25mg. The thing is, who decides what “tolerating” a drug means? For the past two days I’ve opted to take it in the mornings vs. the evenings thinking taking it with more food, and less of my other medications, would mean less symptoms. I did do a little better, but I also felt like sleeping all day. I could probably go back to bed right now and sleep until tomorrow. Of course this could also be my Behcet’s flare so who knows.

As much as I hate feeling sick, I hate feeling useless the most. I’m someone who enjoys having a job. I enjoy spending time with the people I care about, even though I’m introverted, and when my illness takes that from me I end up feeling completely useless. The worst part is when someone you think is a friend, someone you expect to understand it, not only fails to understand you, but attacks you publicly for it.

My ex and I had a bad marriage, and as a result of some things that were said, and mistreatment, I took the step to get a no contact order. It was better for my health not to deal with the stress of dealing with him. A friend of mine had the nerve to insinuate I was weak for doing this, because my “recovery” would suffer. Apparently the only way to conquer abuse is to allow your abuser to continue to act however he/she wants to act, and “recovery” is having the strength to know that their words are just words, not statements of fact.

Isn’t it possible that both of us are right? That I have the right to legally remove someone from my life, because their statements cause me stress during a medically critical time, while at the same time I’m working on not internalizing their words?

It sucks because this friend would say that she couldn’t handle me venting about how hurt I was over the things my ex would say, because it put her recovery in jeopardy, yet when I took steps to end the contact, suddenly the insinuation was that I was weak. Then I found out she was claiming to have gastroparesis, and I was done. I’m the one who talked to her about what it was, and how to be tested, despite the reality that she didn’t meet a lot of the criteria. Her issue, she said, was binge eating disorder and anorexia. We debated because my diagnosis of Behcet’s also included borderline issues of gastroparesis, likely due to periodic inadequate blood flow.

Then I did something I don’t usually do. I stood up for myself. Hard.

My friend is polyamorous, which is fine, because she insists it works for her. I decided to question whether or not her lifestyle was working for her partners. She would come to me whenever one of her male partners showed interest in another female, something considered acceptable, and then her anorexia or binge eating would flare and she’d end up in the ER. This effectively thwarted any potential meetings between her male partners and their potential additional female partners.

I wasn’t suggesting that she was intentionally sabotaging their attempts to add women to the polyamorous relationship they shared, but instead questioning whether or not there were unresolved issues regarding how she truly felt about it. Her symptoms seemed to flare at very convenient times, which doesn’t necessarily mean what she wad going was intentional, but rather that her eating disorders (anorexia and binge eating) may be triggered by emotional situations she herself hadn’t even really considered.

Except she had considered it. At one point she’d flat out stated that her partners had agreed not to add any additional members to their lives until she was more stable in her recovery. 

I think that’s admirable, that men would have such love for their partner they’d give up their right to seek out additional, and perhaps necessary, secondary relationships, in an effort to support their primary. That being said, there were things that didn’t add up. She stated she was kicked out of an outpatient program for being “too sick,” and that she needed impatient treatment, but that it would have to wait because she had to photograph a wedding. If you are so anorexic you require hospitalization, and you’re openly sharing this information, and you’re so damn insistent about caring for yourself above all things, why would you not check into treatment immediately?

Within three weeks she’d declared herself in recovery, without inpatient care, but her posts suggest that the care she’s receiving, care she laments she had to pay for out of pocket because the insurance companies wouldn’t cover evidence based holistic care, doesn’t really fit the care for a recovering eating disorder patient.

I got called out, online, without being named, for bashing her for not “appearing sick enough,” which was never something I said. She is sick. She does have an eating disorder. The problem is, she cannot and will not admit that the eating disorder is a psychological condition with physical manifestations. She’s on a mission to label herself with things like gastroparesis, so she can blame her vomiting on that versus the reality that binge eating until you vomit is a form of bulimia. Oddly enough, she blocked me on Facebook when I offered to speak with any of her friends, friend who were vilifying me based on the things she’d written, because I wanted them to understand that I am sick, too, and that I would NEVER claim someone didn’t look “sick enough” online, or in real life. My post was polite, and I said that I wouldn’t include her side of the conversation, just mine, out of respect for her privacy, but that I felt I had the right to talk about who I was, and where I was coming from, especially since our discussion had very little to do about health.

She questioned my mental health recovery, in the midst of a physical health crisis, so I questioned hers, and then all hell broke loose.

The irony, for me, is that I got a no contact order, which suggests (according to her) that I am incapable of defending myself or at least weak in my recovery when it comes to self esteem. Meanwhile she not only goes off about how sick she is, earning a massive flood of sympathy, but then proceeds to block me when I ask for the right to explain myself.

How is blocking me from being able to contact you any different than me blocking my ex from being able to contact me? Especially considering you claim the situations are similar, because you’re working on your “recovery.” 

I’m sorry, but seeing someone go to art gallery shows, take trips to Vegas an Tijuana, and live a life they love, until something they don’t want to do pops up, is a little irritating to me. Do you know where I want to be right now? In San Francisco visiting a friend, or at work, or out for a walk, or any one of a thousand things that doesn’t involve sitting on my couch hoping I don’t throw up the lunch and snacks I’ve been able to consume. She claims that she needs days to recover after these events, yet she does nothing to prevent damaging herself during such events. The truth about chronic illness is you miss out on things you want to do because you know your body can’t handle it.

As I sit here, staring down the three weeks until I get my blood tested to see if I should be feeling better, until hopefully the side effects wear off, until I get my MRI and results and my new nerve conduction test, she’s in another state visiting family. I think what bothers me is that there are always people who seem to absorb the illnesses of others, and utilize it for sympathy, and later, to become role models. When she found out about my PTSD, she magically had it, too, even though the symptoms she was telling people about made no sense whatsoever. She was counseling people with general anxiety, and no history of trauma, that even one panic attack meant you could have PTSD, and so people with random depression or anxiety, flocked to her for her PTSD prowess. My dog was a service dog and allowed to live in housing even though dogs weren’t allowed? She had a service dog soon after that.

We had a falling out before, years ago, when she pursued an abortion and bluntly told me, “I wanted a puppy not a baby,” despite knowing I faced infertility issues with my ex. I understand that she was in a bad place with her husband at the time, they were separating, and the whole thing was a mess, but the way she handled it was disgusting. She told people she had a severe illness requiring emergency surgery, and then cancelled photo sessions and apologized that prior sessions would be edited a bit late. I’m not saying she needed to tell her clients she was having an abortion, but even with friends she made it out to be this emergency situation that it wasn’t.

She’s had more abortions since then, and honestly it’s her right, but perhaps the holistic approach to family planning isn’t the best option if you’re constantly having to experience miscarriages or abortions. That’s the thing with her, really, is that the rules apply when convenient, and her friends, like me, often find ourselves fighting for the same rights she affords herself. It’s possible for me to work on not internalizing negative verbiage while at the same time opting to make it illegal for the person causing me so much trauma, to be a part of my life. She decided I was harmful for her recovery, for whatever reason, and blocked me, which should have been an “aha!” moment for her in terms of understanding that you can still be recovering while at the same time choosing to remove people that contribute to the thing which you are recovering from.

Of course I don’t think that was the case. She deleted me because she didn’t want to have to defend the un-defendable. She herself admitted that she handled the situation with one of the potential relationship girls negatively online, but that at the time she felt good about it. That right there I was proud of her for, recognizing she did it, and realizing that to live the life path she’s chosen, means having to have some damn good compromising skills and patience.

I wish I had her as a friend, mostly because her knowledge of medical marijuana and natural ways of treating things was beneficial. I still have to do things like undergo infusions, and take horrible drugs, but having someone around who knows of a non pharmacological treatment for nausea (yay peppermint oil) is helpful. We won’t be friends again, not the way things ended, and it’s probably for the best. When you’ve spent literally years trying to get diagnosed, it’s super frustrating to have someone meander into your life and start hijacking those diagnoses. Even if she does suffer from some medical conditions, the overwhelming issue in her life is that she can’t handle stress, and she loves attention. She gets “sick” then gets “better” and suddenly feels it’s her right to counsel others about their medical and emotional conditions. It’s actually terrifying. She once told me the best option for my severe kidney infection was garlic, which I’ll admit garlic has germ killing properties, kidney infections still require intervention with antibiotics.

I’m just so angry. I’m angry that in the midst of all this stress and drama and physical sickness, someone I considered  a friend, bashed me when I had a high point. I was thrilled about the no contact order, I had scored a couple dresses on sale, and was ready to go to LA for two days with the guy, and wham, she decided that judgment was the way to go in that situation. It’s absurd!

My trip to LA? Fun, but exhausting. I’m still recovering over a week later, because I refuse to accept my limitations. The live taping was amazing, but afterwards we got lost because neither of us had phones (rules of the show, though we found out after we could have left them with the check in people but whatever.) We walked for at least an hour, which would have been okay, but I wasn’t feeling amazing about 20 minutes into it. I’m out of shape from all the bed rest, but I’m also sort of in this uncontrolled on and off flare that sneaks up on me. The next day I woke up and I seriously wanted to die. We hung out by the pool, and talked about plans for that night, but I was sort of please when we went to dinner and he wanted to just go back and hang low. He felt bad, but I was in so much pain by that point, faking being “okay” was becoming impossible.

He saw me at a really vulnerable moment twice during the trip. That night I was curled up in the shower, desperately trying to will away the severe abdominal pains that plagued me. He came in and his eyes locked on mine, and I could see the concern, but then again, this wasn’t something I hadn’t gone through a million times before. I’d ruptured an ovarian cyst, but that wasn’t the cause of all the pain…still I let him sit on that as the excuse. Then my PTSD acted up on the way home while he was angry in traffic, and I was angry with my stomach for being uncooperative. For the first time in months I’d had to tell him to hold off on sex because of my pain level, and while we’d managed to have sex later, it still scared me.

Now he’s out of town, the pain is back, and I’m sitting here wondering how someone who can claim to be as sic as my “friend” is, juggles it all. She touts a support network that seems to be fantastic, but the premise it was built on is falling apart. How can she maintain a sexual relationship with both men, and not feel like she’s dying? (Answer is that she apparently has stopped having sex with the one, for the most part.)

Her attack on me wasn’t just about my ex, but about my insecurities with “the guy,” which honestly just makes me sick. Every person alive has insecurities while they’re seeings someone, regardless of boundaries, labels, etc. I may have additional insecurities because of my current and past situations, but that doesn’t mean I have to launch into some metaphysical analysis of my partnership with him. Nor does it mean I have to lock myself away and work solely on myself because I have the issues I have. I worked on myself, for years, if I hadn’t I’d never have left the abusive situation I was in behind.

All in all, I am sick. I feel sick. I hate admitting it and I hate asking for help, but it’s the reality of my existence. When my roommate judges me for being on the couch day after day when he gets home, I get angry. I pay my portion of the bills, who cares? I make efforts when I can, but it’s a struggle. I sacrifice something of myself to please him, despite the reality that he’s probably still not happy. (Example: I put away the dishes, most of which he made, and then loaded up the dishwasher with his disgusting smelling dishes from the night before. I sit around a lot because I’m basically on a mission to destroy my immune system, with the newest drug metabolizing into what is basically chemotherapy. Sorry if this makes me a little tired, nauseas and cranky!) I cleaned because the smell was making me gag.

He wants me to go out more, to be something I’m not, but then again, I want to go out more, too. The problem isn’t wanting, it’s being able, and my body simply can’t tolerate things like other bodies can. Maybe someday…but not today.

It makes me feel so damn useless : (


Feeling Useless, and Calling Out Fakers