Grieve and then Grow

I woke up today several times. It was one of those mornings when nausea wakes me up, so I handle it with medical marijuana because it’s the fastest working thing that won’t increase my seizure risk…then go back to sleep until it returns. My rheumatologist messaged me back and basically had said that I needed to see my primary care doctor, or go to urgent care/the ER. My primary care doctor didn’t have openings, and urgent care is closer.

At this point I know what I need…fluids and nauseas drugs. I also know the reality is I need something to make this flare go away. Nothing is going to make this flare go away, at least not anything that can be reasonably sustained over a period of time. The ER this time of year is a just a pile of germs, especially after a holiday weekend, and unfortunately urgent care wasn’t much better.

The first doctor was sort of baffled by my symptoms, and wanted me to go to the ER and be admitted to the hospital. She recognized what I already knew…anything they did today, was just going to be a stop gap measure. I needed treatment of the underlying cause, not just the symptoms. Preaching to the choir doctor…but I’m not going to hang out in the hospital while confused staff rheumatologists go through my charts and realize we’ve tried all of the conventional stuff. She also said the marijuana could be causing my constipation. The day I used the most was the day I finally went to the bathroom, probably because I was able to drink enough water that day…

So she gets a bit flustered and says she can’t make me go to the hospital, and I ask if I can get fluids and nausea meds there (in urgent care) and she says yes.

Let the process of trying to draw my blood and place an IV commence…

Look, I have bad veins by all standards, but toss in the vasculitis and even the best nurse is going to struggle. They manage to get the IV in, but drawing blood requires two nurses, because one has to keep the needle in place while the other swaps tubes. I also bleed super slow, so that was making it extra fun. After this point a new doctor comes in, because of shift change, and he’s a laid back guy. He agrees I’m flaring, contemplates trying a different steroid, but after talking about my prior issues with steroids (needing super high doses for any sort of efficacy) he agrees that my original plan makes the most sense. Get the fluids, check the labs, and switch over to a high fluid diet in lieu of solids. It’s better to eat ice pops and Jell-o, than to end up in the ER because I’ve had solids but no fluids.

When you’ve been sick for so long, you learn to sort of gauge what the right response is to whatever symptoms arise. It’s only when something new pops up, that you’re truly thrown off. My doctors, especially ER doctors who haven’t seen me before, are going to struggle a bit to process what the best course of action is. I get it. If I were any other patient, you’d keep me until I had symptom control. I won’t get symptom control that can be extended after my exit from the hospital. It isn’t a pessimistic view, it’s reality. At this point in time, there isn’t anything they can do for me during an admission, that is going to extend beyond 1-2 w weeks post admission.

That is the depressing part. I want a normal life, LA with my friends for the holidays, ice skating, and running around the beach. I want to join a sports league in my city, so I can meet new people, and bowl!

Could I bowl? Absolutely. Could I plan in advance what days I would be physically able to bowl? No. That is the part that sucks. I am normal, but I can’t be normal. I want to work, I want to buy things on Cyber Monday, and I want to make holiday plans. There are so many things my friends and family members are doing, that I just can’t, at least not consistently.

This has been the struggle with disability. There are some days when I am able, but other days when I need medical intervention just to obtain adequate hydration. I don’t get to choose which days are which. I can choose when I get some of my medical procedures, but again, that doesn’t guarantee what days I’ll feel what way.

It isn’t all, “I hate my life!”

One thing I’ve been wanting to do lately, is bring people together who struggle with chronic illnesses. I am optimistic, and I do cope, but I definitely have days when I just can’t, and that is okay! Kick, scream, cry, do whatever it is you need to do. Embrace the anger and the sadness. Why? You need to make peace with the negative parts of your illness. I always thought it was black and white. That if I was pessimistic, at all, I would be giving power to the disease. The truth is that we can’t be honestly positive, until we have embraced the things we’ve lost to our diseases.

How can I appreciate the interest I’ve found in investigative forensics, unless I own the fact that I’ve lost my ability to really be in a laboratory environment on a consistent basis? How can I appreciate the absolute amazingness of my friends who have stood by me, or have come into my life during this difficult journey, until I grieve for the friends and family that I’ve lost because they couldn’t handle my illness?

Turn the losses into gains, by acknowledging just how beautiful your new circumstances are…because they’ve grown from the loss of something else.

Grieve. I grieve the loss right now, of my ability to do the things I would normally do this time of year. I grieve the opportunity to join a sports club. I grieve for my financial losses. I grieve because it’s natural, and because I know that I will be able to connect these losses together once something beautiful has grown up from their roots.

I don’t believe that everything happens for a reason, but I do believe that positivity allows you to make sense of the things that have happened in your life.

Advertisements
Grieve and then Grow

Neurological Symptoms Getting Worse

Things haven’t been good, and between the livedo reticularis getting seriously bad, and my neurological symptoms flaring horribly, I know that my Behcet’s is winning. I’ve been on a steroid taper, but there just doesn’t seem to be much relief. I went to neurology today, and we’re increasing my seizure medication and my neuropathy medication, but he really doesn’t have a ton of faith that it will help my symptoms, including my shakes and ataxia. It could help other issues, but there really isn’t one drug to help my specific set of neurological symptoms.

We don’t know what is happening in my brain/spine/nerves to cause my shaking, ataxia, and hyperactive reflexes. I present a lot like an MS patient, but I don’t have MS. Also, because the symptoms get worse with flares, and do improve slightly during high immune suppressing treatments, it makes logical sense that it’s related to my Behcet’s. With my GI system crashing though, there is a question of how to adequately treat most of my symptoms…while also having to embrace the reality that I’m sadly unique in how my neurological symptoms present.

Today the doctor mentioned IVIG, but we aren’t there yet. I’ll bring it up with my rheumatologist next week, just to see if that combined with other therapy options is an idea. I’ve also read some things about plasmapheresis, though again, it would be experimental because Behcet’s is so rare. If I had to do more chemotherapy to live independently, then obviously I would, but I’m desperate to try other options first. Some of the things I want may seem odd to someone who isn’t chronically ill, but for me they’re everything.

First and foremost, I want a port. I know there are a lot of risks, and the risks do scare me, but because I’m so hard to stick, if we were to take on another IV treatment, I would want to have an easy access situation. The other benefit of a port, is we could talk about hooking me up to IV fluids, and even IV medications. With my poor GI motility, it just makes sense for me to bypass my stomach for a lot of things. My seizure meds, and my immune suppressing drugs, as well as my nausea medications, are the first things I think of. Also, I have to choose between eating or drinking, which sucks. It is so painful to do either, that I’ve been giving up on food so I can drink enough fluids. Doctors are still saying I’m dehydrated though! This has gone on for years, with doctors always insisting I need to drink more water, but my body just can’t handle more water orally. IV fluids at home would really benefit me, even if we just did them every other day.

The second thing is the wheelchair, and while I’m disappointed at needing one, I appreciate that it will be a tool for me to use to become more independent. At this point, they have approved me, so I’m just waiting for the company to get in touch, and to work on what kind I’ll be getting and when it’ll be arriving. I’m still really embarrassed to need one, but I’ve fallen several times in the last few weeks, and with my diet so limited, the weakness is even more pronounced. We know from the way my body has declined in the past, that my neurological symptoms are only going to get worse. It doesn’t make sense for me to put pride over my well being. If I wait until I’m fully unable to walk, then ask for a wheelchair, I’m going to be stuck waiting for however long it takes.

The third thing is nutritional supplementation. I refuse to get an NJ or an NG tube placed.  I would likely need an NJ as my stomach is the issue, and they’d want to bypass my stomach. My gag reflex is just too strong, and living with a tube from my nose into my intestines would not be something I could handle. I also don’t feel like I’m sick enough to warrant a surgical feeding tube, and wouldn’t want one anyhow. I can still intake things orally, and I feel like if we got the right supplements I could get by. I’ve been choking down Boost, and I can tolerate potatoes, PBJ (sometimes), and sorbet. My issue is I’m not getting enough protein, or other nutrients, on my limited diet. Today I had a cup of sorbet, and that was it until 6 when I forced myself to eat some potatoes. If you’re wondering, it hurts, and I’m miserable, but at least I kept it down thus far.

I need a support network. I need people who get what I’m going through, and don’t judge me for being negative. I had a friend who was really close to me, who had multiple medical conditions as well, so I’ve been venting to her about my health lately. She is also someone I go to when it comes to how to date with chronic illnesses, and how to talk about health issues with someone you care about. Unfortunately we’re not friends anymore. She felt as though I was becoming wrapped up in my illness and letting it define me, and that my casual dating situation with the guy I’ve been seeing was unhealthy for me. Yes, I want to find someone to seriously date, but at this point I don’t have the energy to put into dating. (Not to mention I can’t eat much, and alcohol is a big fat no at this stage.) Yes, I have other positive things going on in my life, but everything has changed course because of my illness.

If you’re reading this, and you have a chronic illness, don’t feel bad about feeling bad! When you find yourself in a rut because your disease has taken over, it’s okay to process it for as long as it takes. In my case, I began losing more and more things that I’d discovered about myself in the last two years. After my marriage ended, and I was free from an abusive situation, I really started to find who I was as a person. Then, my disease progressed, and I began to lose things I’d started to enjoy. That process is ongoing, which means my frustration and sadness is ongoing. I don’t dwell on it publicly but I do vent to friends because I need help finding me. Yes, finding yourself is a personal process, but I think being sick it’s important to have people in your corner to help you. If I didn’t talk about my health, I can honestly say I would get lost in suicidal thoughts.

Really? Yes, really. There have been points in this journey where I’ve just wanted to die, and I think it’s something anyone with a chronic illness deals with. Whether or not you’re truly suicidal, or just feeling overwhelmed and the thoughts crosses your mind, it’s a real issue that requires real help. I am on anti-depressants, and I’m setting up more counseling sessions. I don’t want to actually die, so I need to make sure my mental health is being handled by professionals.

Please seek professional help or go to your nearest emergency room if you are feeling suicidal. Various countries and states have numbers you can call if you need someone to talk to. Call 1-800-273-8255 in the U.S. for the National Suicide Hotline. You can also chat anonymously. 

So that’s an update on my situation. My brain is starting to become worthless, so I’m off for now. Please address issues you have with your illness, and know you aren’t alone if you’re depressed or anxious. We can get through it, you can get through it. Your life (my life) OUR LIVES, are worth fighting for.

Also the only thing that’s working on my nausea is medical marijuana. That makes the part-time job hunt harder because I can’t take anything that they drug test for. At the end of the day, I can’t work if I’m up all night dry heaving, so it’s worth it for me to forgo those positions in lieu of the medical treatment that actually works for me.

Neurological Symptoms Getting Worse

Breaking Down

The last few days have been miserable, and the misery continues. I’ve manage to stay positive through most of this recent flare, but things have hit a point where I lost the ability to smile my way through the pain. Currently I can feel every joint in my body, or at least that’s how it feels. I’ve take to googling, “is there a joint in your <fill in the blank>” because I’ll have such intense pain at a random location, that I’m not sure what else it could be. Fun fact, you can get joint pain in your collar bone.

This weekend was a big outdoor music/art festival that I was really hoping to attend. I knew that, unless I was in remission following the Rituxan, I wouldn’t be able to do all three days, nor would I really want to be outside for all three days, but today was the big day. I was really excited about the idea of seeing the Chainsmokers, and then there were a bunch of other bands that also piqued my interest. So, as the flare dragged on, and the symptoms worsened, I’d let go of the dream. It didn’t mean I wasn’t upset by the reality of missing out, it just meant I was prepared.

Until friends started posting photos online yesterday of day one, and I started to really think about how things were going. I’m back to the walker, and even with the walker, I can’t go very far before my body simply gives up. My face is covered in lesions, and people keep saying it’s acne from the steroids but it isn’t, it’s the Behcet’s. My leg has ulcerations, too, and they’re large and painful. The fatigue is horrific, but because of the pain, I’m not sleeping well, so it’s this constant battle between exhaustion and an inability to give into the need for sleep.

I want to be positive. I want to tell myself that the trip to the NYU clinic is just around the corner, and that as soon as I go there will be at treatment plan, and a road to recovery, but on days like today, I can’t even process the hopeful portions of the situation. My friend was shocked today when I told her via FB messenger that I was ready fore chemotherapy. One of the big reasons I pushed so hard for NYU was so that I could avoid chemotherapy and try a novel treatment plan that would spare me the six months, and side effects. Today the pain is so bad, six months of chemotherapy hardly seems like a sacrifice.

When you’re chronically ill, you find yourself missing out on a lot. Strangely, you don’t really think too much about it, at least after a while. Your reality is your reality, and what you can and can’t do isn’t something you choose. I’d love to do what my friends do, but I also know I can’t, so I just go about doing what I can do, and enjoying the moments I get. Still, you have those moments, when you’re confronted with the loss of normalcy in really unexpected ways. I have just over two weeks until I’m expected to makeup a class, or receive an F grade, and I don’t know how I’m going to pull it off. I can’t really move, let alone complete laboratory assignments with any kind of precision right now. Add in not being able to work, so I can’t afford the $100 a week to get to and from classes, and that this is four months straight of on campus coursework…yeah…you see where I’m going with this.

Getting the service dog would be a huge help, but at the end of the day, I’m still very sick right now. The amount of pain I’m in, along with the limited mobility, and visual impairments, is suddenly unavoidable. Previously I had joint pain and fatigue, and the occasional ulceration, but most of my symptoms related to my stomach. I still have stomach issues, and definitely have ulcers brewing internally right now, but those things are sort of simple to hide from people. Yes, I lost weight, and people noticed, but they accepted my excuses, and we went about our lives.

Now? Sometimes it feels like everyone has their lives moving forward, and I’ve stalled. I don’t expect anyone to wait around with me while I sort through the train wreck of mechanical failure that is my own body, but I also worry that, by the time I’m back on the road, I’ll be miles behind everyone else, and worse, miles behind where I want to be. Will I ever find someone who loves me, and wants to be with me, despite the reality that this type of situation could crop up again? Even with chemotherapy there is a chance I have a bad flare, and need more chemotherapy, or some other serious treatment.

It’s hard explaining to people who view “remission” as permanent. It can be, and if it is, you’re lucky, but with my constellation of symptoms, I will always be on maintenance medications. Always. I don’t say it to be negative, I say it because it’s the truth. Even in the absence of symptoms, when they can reduce the drugs I’m taking, they will have me on something to prevent symptom recurrence, especially given the severity of symptoms I’ve had. It isn’t like cancer, where remission really can mean it’s gone forever, and you just keep an eye on things to make sure it doesn’t come back. With an autoimmune disease, your immune system is permanently fucked. Even if it decides to play nice for a while, it’s not friends with you, and it only takes a stressful event, or illness, to trigger it’s overreactive anger.

I want to be working in a full-time position, doing what I love. I want to finish my degree. I want to apply to an internship program and get my advanced licensure. I want to be at concerts, and vacations, and weekend getaways, with friends, and new friends. I want to be out downtown, dancing, in heels and a dress. I want to go out to eat, and actually eat what I want, without fear. I want to sleep through the night. I want to keep my apartment at a reasonable temperature.

Instead I’m looking into filing for full disability. The internship program is impossible, requiring a full 40-hour per week commitment, which I can’t do health wise or financially at this moment. Concerts, vacations and weekend getaways are also unobtainable due to my health and finances. I can go out, on occasion, but I can’t dress up right now. I can only wear flats, and in a dress the ulcerations on my legs make me uncomfortable. Let’s not even talk about the horror show that is my face. Eating at a restaurant is a statistical nightmare. Assuming I can get plain white rice, all I can do is take one or two bites, because the GI ulcerations are going to throw a fit the second they’re touched by anything traversing my GI tract. I haven’t slept straight through a night in longer than I can remember. I’m woken up constantly by cold sweats and pain. The heating pads, and to flashes, mean our apartment is unreasonably cold.

I live in this box, where I smile and give a thumbs up, but desperately want to climb out of the box and just live life. I want my smile and thumbs up to be me doing the things that I want to do, instead of relishing in the joy of the things I can do. It doesn’t mean I’m not grateful for what I can do, it’s just that finding the joy in the things you’re able to do isn’t always gratifying.

Then there is the pain. The severe and horrible pain. Pain that I haven’t dealt with before, that I swear is threatening to swallow me whole. Shooting from my neck, down each vertebrae of my back, like hot little exploding fire balls. Pain in joints I didn’t know existed, and joints popping so loud I swear the neighbors can hear them. Pain that makes me need to be held, when I’m not that girl. I’m not the girl who asks a guy to come over because she’s falling to pieces over her physical state, or mental one. I’m the girl who pulls her shit together and deals with her own crap.

I texted the guy because I’m in that much pain. He’s actually going to the festival today. The day I was dying to go. I burst into tears, not because I was mad at him, I’m actually really happy he was able to make it. I cried because I wanted to be there. It would have been nice to go with him, but I just wanted to go in general. It was like this pile of emotions, neediness which I hate, and jealousy, which I may hate just a little more. Again, I’m happy for him, but it’s hard not to despise my current situation.

You might be a spoonie if you’ve run out of things to watch on Netflix, Hulu, Amazon Prime, and a plethora of other streaming sites…so you order the industrial antenna because why the hell not try and pirate as many channels as possible so you can watch live TV? Especially if that means football?

I want my life back. I want a life back. The quality I have right now is poor, and I’m not asking to run marathons, or jump into some insane routine that involves 60+ hour work weeks. I simply want to live like my peers. I want to enjoy things again

Breaking Down

When Your Nerves Make You Nervous

I have two rheumatology appointments this week, which I’m thrilled about. My old rheumatologist is seeing me tomorrow, and I need to ask her about some lovely lesions in a not so lovely place. Then the following day I see my new rheumatologist who will hopefully be just a *little* nicer to me this time around. He’s the same asshole who wrote “probably” Behcet’s instead of the reality that I have Behcet’s, on my paperwork. (Lovely man.)

Anyhow, I can walk without my walker, but not for long distances. I need to get a can or some other assistive device, but it just feels so aggravating. I find myself pushing myself, then dealing with the numbness and tingling from pushing myself. Of course that leads to the weakness, which leads to me not moving, which leads to a vicious cycle of lather, rinse, and repeat. I know I have ulcers in my intestines, because I’ve given into drinking the lovely sucralfate suspension. It tastes horrific, but the wonderful numbing power isn’t really something to be belittled. It’s kind of scary not realizing how much abdominal pain I have, until I don’t have it, and then realizing that normal people feel like that all of the time.

My appetite is back now that my steroid dose is lower, but then again, so are the ulcers, eye issues, and oh so lovely neurological problems. The Behcet’s headache is real, and it’s nasty. I wake up in the morning with the shakes, and the night sweats are vicious. You spend days wondering if it’s the medication, or the disease, before you realize it’s all basically irrelevant. On top of it I’m poor, so I had to eat what was in the house today. That ended up being a cucumber and vinegar salad, a favorite, but not when you’re mouth is raw. Oops.

The neurological issues have me irritated because I feel like they’re Behcet’s related, but I can’t get the doctors to agree because my MRI’s are, “mostly” normal. Nobody has elaborated on what that means, but from what I’ve gathered there isn’t evidence of Behcet’s in there. I’m not totally shocked given that 90% of my symptoms are peripheral. The seizures are obviously a concern, but with the gallery divided over the cause of that, I guess I’m in a holding pattern. The increased dose, along with rest, seems to be keeping things under control, but I’m also still taking a decent dose of steroids and having skin symptoms. As my steroid dose drops, the skin symptoms increase.

Rheumatologist #2, that I despise, tried to chalk my skin up to steroids, but then the steroids cleared my skin, and he was forced to eat his words. Now he’s back to the same old line, despite me showing old photos of the same rash, which again, cleared at that point with a few steroid injections and steroid topical creams. He won’t talk about neurological involvement, and neurology won’t talk about rheumatology treatments, even though rheumatology’s treatment, 3 days of 1 gram IV steroids, cleared up 90% of all my symptoms…neurological symptoms included.

I guess I’m just terrified of showing up to my appointment in NYC, and having the doctor agree with my current doctors, and not have options in terms of treatment. The reality of having neurological involvement, but no MRI abnormalities, is somewhat terrifying. My right side, particularly the leg, has betrayed me. I also have nystagmus, which honestly, makes no sense, given that I’ve never had it before. I actually did an in depth test years ago that ruled it out as a cause of my vertigo when they were testing for inner ear diseases. The fact that it would show up now, in the midst of all the other Behcet’s symptoms, makes me feel like it’s a sign something isn’t going properly in my brain.

When you’re chronically ill, you get intuitions. It’s even more tuned in when you have multiple chronic conditions. I know I have PTSD, and I can tell you when my heart is racing because I’m anxious, or if something weird is going on with my body. I can tell you when my fatigue is because I’m depressed, or if I am legitimately fatigued from my Behcet’s. I’ve learned to sort out what symptoms go where, because they genuinely feel different. Doctors tend to think patients with mental disorders can’t sort to the mental disorder related symptoms, from the disorders stemming from other conditions. Maybe it’s true, sometimes, but not in situations like this, and not in someone like me.

I need NYU to work out because I desperately need a doctor in my corner who can say to other doctors, “Shut up, listen to the patient, and listen to me.” He’s the expert, and it’s like, if he has my back, the other doctors will have to fall in line. It’s a one time visit, to develop a treatment protocol, and there is a lot riding on it. I’m totally ready to go to the movement disorder clinic here at UCSD, once they find an opening, but I think it’s a bit ridiculous to exclude Behcet’s when every other possibility has been worked up. Why are we searching for something else when I meet criteria, minus the MRI? Why are doctors in the ER calling my seizures psychological, when my inpatient neurology team needed to call a code because my heart started throwing extra beats, and I wasn’t breathing adequately?

In a world where ER doctors are overworked, and chronic illness patients are forced through ER doctors to be admitted, it becomes a cluster of chaos. I’m hopeful that having hospital affiliated doctors will allow me to be direct admitted in the future, should I flare and my doctors decide I’m better off in an inpatient setting, but in the meantime I’m stuck in a place where I don’t know where to go or who to see regarding various symptoms. I have all these specialists to see, and all this paperwork to file, and I pretend like I have it all under control, but really I just want to curl into a ball and pretend like I have the flu. Pretend like this is just something that impacts me for a few weeks, and then I’ll be fine.

School is another stressor, which sucks because I love school. I won’t know until November if the service dog I’ve applied for will be up for placement, and it could be even longer before he’s placed. There are interviews, etc., to take into account, though the trainer seems to be really happy with the idea of me as his companion. The issue is he may have a kidney condition, but he also may not, so it’s, again, totally dependent on the test results, and what they decide when it comes to placement. I have to take a class in October, or I get an F, because I took an incomplete back in April before I started the infusion process. November, December and January are also on campus laboratory courses which, in theory, are doable, if I can find a reliable ride program, and if I have assistance with a dog. This isn’t so true if I’m doing chemotherapy, depending on how I’m feeling during the chemotherapy. There’s a part of me that wants to power through, regardless, and another part of me that recognizes I’d be having chemotherapy during cold and flu season, then going to a college campus.

It’s such an odd place because I haven’t been offered any other treatment options. Long term steroid use isn’t really effective, or safe, and the doses required to control my symptoms are simply too high. The only real way to dent this, at this point, seems to be to wipe out my immune system, and the only way to do that is with some aggressive chemotherapy.

I find myself justifying symptoms I shouldn’t justify. The insane amount of antacids? Well I am eating more. Slipping and falling? I was sitting too long. Bloody bowel movements? It happens sometimes! Then I see my face, covered in ulcerations, and my legs, and my hands, and now my arms, and I realize, that I’m flaring. that my head hurts. That my eyes are straining. That my exhaustion is beyond any normal level of exhaustion. The numbness and tingling, and lack of coordination, it’s not okay, and it’s not something I can  just chalk up to lingering effects of neuropathy, even if it is improving, because it has happened before, and it will happen again.

The MRI was normal, but what happens when it isn’t? What happens when this painful cycle of recurrent flares leaves me someplace random, with legs that don’t work? In the meantime how do we explain the hyperactive reflexes and the nystagmus? Why are we ignoring so many symptoms simply because the main box, the MRI, was checked off as normal?

Something is wrong. Something in my body is not okay. I need someone to hear me, to help me, to believe me, more than I need anything else.

Sidenote: my inhaler and I have been BFF’s lately, which is absurd given the amount of steroids I’m on. Inflammation for every body part I guess?

When Your Nerves Make You Nervous

8 Days Later – the Hospital Stay

On the 15th I had an MRI appointment. I woke up that day with wobbly legs and figured it was good my neurological symptoms were acting up. Maybe this would explain to my doctors what was happening with my body. I knew I was walking weird, and the heat wasn’t helping things. By the time I got to the hospital they had decided it would be better to wheel me to the MRI than have me walk. Afterwards I was sent to the ER by my neurologist, and sent home without an explanation. I was given a walker (with no wheels), which just felt like a convenient way to break teeth. A friend drove me home.

On the 16th things got worse. My arms were impacted and my hands felt like someone was mashing on my funny bone. By the end of the day I called the neurologist’s office, and the nurse said to return to the ER, and have them call the doctor’s personal line. I obtained a ride, somehow made it into and out of the car. I was in agony. The ER didn’t do anything. The doctor did a basic exam, notice I had out of control tremors, no muscle control, an when he did get a hold of my doctor decided to send me home anyhow with instructions to follow up on Thursday (two days later) since I already had an appointment.

My roommate picked me up and had to load me onto a luggage cart to get me up to our apartment. A friend came over and helped me undress and shower. I spent Wednesday in bed, surrounded by food and drinks. I let the dog out on the porch twice, falling hard once while I did it. In typical Behcet’s fashion I felt like I was dying without a reason. You get anxiety, like maybe this is permanent, maybe this is the lesion that ends your ability to walk, or see, or do something you’ve come to take for granted.

On Wednesday night my friend (the guy) came over and was pretty much ready to take me to the ER that moment. I insisted we stick with seeing my neurologist the next day because I refused to go to another ER and be sent home to to wait for the impending appointment. By this point I couldn’t open anything but my thumb and pointer finger. My core was starting to twitch with the responsibility of holding up the rest of a body that refused to coordinate itself. I would lay calmly for long enough and the tremors would stop, but I would feel tingly and floaty. The second someone asked med to move, or moved me, the shaking and tensing would begin again. The neurologist immediately seemed to be out of his league and shocked at the extensiveness of the movements. He told me initially we could try a medication used for Parkinson’s but that he wasn’t sure it would work. by this point I’d been constantly moving for 3 days. I broke down, the sobbing started which made the shaking worse. I couldn’t feed myself. I couldn’t walk. He told me the medicine would make me vomit, which made me wonder how I would handle the task of sleeping around the toilet that night.

I was sent to UCSD ER immediately.

The first ER doctor I saw wasn’t too big on the whole admitting me for sure process. He said that of course my doctor wanted me to be admitted but it was up to their neurology team to decide. The hospital was full, with some patients waiting in ER beds for 54+ hours just to get a hospital bed. I didn’t care. I was done. My body hurt. I wanted someone to fix it or stop it. My friend (the guy) stayed with me until neurology 100% said I wasn’t going home. I may have to spend the night in the room in the ER, but I wasn’t leaving the hospital until I’d been fully worked up. Another friend came by with my original MRI even though the hospital planned on doing a repeat exam as soon as possible.

They moved me that night to another ER room with a hospital bed, and a TV. Medications were adjusted, but in the morning it was clear that had only made things worse. I woke up with my jaw locked. A team of neurologists came in, and so began the process of becoming a science experiment.

When you have a rare condition, you attract attention, and it’s not good attention, at least it doesn’t feel that way. While I was pleased to have teams of doctors working on my case, it started to become dehumanizing. Tests, family history, lather rinse repeat. The following evening I had a hospital bed, and a relaxed jaw. My body was still useless.

My roommate was an amazing woman, who trained service dogs. I told her I didn’t mind if she was up early watching TV, or up late watching TV, that at home I had the TV on a lot and it didn’t bother me. We chatted, eventually peeling back the curtain. My MRI was for Saturday morning (I think). Her dogs were coming to visit, and I was beyond excited. Then things got dicey. I had to receive all of these drugs for my MRI so I was up most of the night thanks to the steroids. The Xanax/Benadryl cocktail did make me sleepy, but I still needed to be restrained for the MRI because my movements were periodically uncontrollable. Even asleep, the noise from the MRI would startle me, and cause the jerking to begin again.

Things got bad. I woke up and they injected the dye, and I felt my stomach drop. I assumed it was just from being on my back so long, and the IV injection. Once back in the tube, I realized it was an aura. I was going to have a seizure. In an MRI tube. Restrained. I focused on breathing, I just needed to stay calm and squeeze the emergency release ball. Only my hand was locked, and I couldn’t. The last thing I remember thinking was I hope the padding is enough to protect me as I let go of the ball.

The rest was told to me by my friend Amy, and others who were around. I apparently took the technician about a minute to notice the small movements were getting larger. When the took me out, I was in full seizure, strapped on my back, choking on saliva. They unlocked parts of my restraints, got me to a hospital gurney, and called a code blue. My heart rate was erratic, my oxygen saturation was okay, with oxygen and suction, but I did not, in general, look good. I guess that is kind of inferred by the code blue.

For some reason they’ll start working on you in a hallway, but they take you back to your room to process the code. They pulled my friend Amy out, and closed the curtain. They charged the defibrillator, and were arguing over whether I needed to be intubated. Amy was screaming, having heard the code blue call through the hospital when I was in MRI, and so she just knew it was me. She was shouting at nurses asking if I was okay, but they wouldn’t her in. She said all she had seen was my limp white body on the gurney, with white foam all around my mouth.

I was lucky. The massive doses of seizure drugs stopped the seriously long seizure that had nearly stopped my heart, and my breathing. When I woke up, for some reason the only thing I could think of was the dogs. I kept saying dog, and the kept thinking was confused. MK, my roommate let them know I wasn’t nuts, that she had service dogs with her, and I kept saying dog. Rocky, the sweet lab I’d been interested in, came over, and they were the first eyes I saw after coding. The concern in his face for me, a human he’d never met, struck me to the core. He rested his head on the gurney and I drifted off to sleep.

They moved me to a private room, one step below ICU. I got to visit the next day with Rocky’s brother dog, who was with a sweet man and his wife. My friend Amy, pushed to her breaking point, had verbally assaulted my friend (the guy) into coming to the hospital because she needed a break. She couldn’t stop seeing me the way she’d seen me, so dead.

Lumbar punctures. Blood draws. Eye exams. Another MRI. Two more seizures, one major, one minor. Medication adjustments. Three days of hard IV steroids, and finally I was discharged.

Officially? Probably Behcet’s, but they can’t prove how or why. I do have seizures. The doctor told me the pseudo seizure or anxiety/conversion disorder diagnoses that had been previously suggested, were absolute garbage. Everyone who witnessed me seize, and the description of the partial seizures, was enough for him to realize this was actually happening pathologically, and not emotionally. Nobody knew why I had nystagmus when I was admitted, but it was gone by the time the steroids and eye drops had begun.

The eye doctor found anterior uveitis, which explained the sudden blurred vision. This means a month of eye dilating drops when my eyes are already dilated, and steroids drops for at least a week. He said conclusively it was Behcet’s related, completing any other questions doctors had regarding the validity of my diagnosis.

I’m lucky I had friends to visit, to keep me grounded. I lost count of needle sticks. The blood thinning injections, blood sugar checks because of my high doses of steroids, insulin to adjust my levels, and of course blood draws, and IV replacements. There was talk of placing a PICC line, or other venous catheter because it was becoming increasingly difficult.

Now I’m adjusting to a new life. Waiting to see if I get to the clinic at NYU. Waiting to call Monday to set up my follow up appointments. Accepting I need the walker to get around, and that I am very weak. Desperately trying to raise funds to cover the expenses I’ve been left with since dis ability has been screwed up, and not all my medical care was covered. I also really feel like Rocky is the service dog meant to be with me. The way he looked at me with such concern, I just felt an instant bond. I know I’d be lucky with any of her dogs, but Rocky and I had this connection like we wanted to care for each other.

I made a Go Fund Me, but I worry nobody will contribute. I keep staring at my walker, at my life, and hoping things improve, but knowing that until I get to NYU I won’t know the significance of all of it. I know blood work is coming, lots of it, and that through it all  won’t have income. It’s scary, and terrifying, but it’s my life, and I have to accept it for what it is.

Bruised. Battered. Wobbly. But not Broken.

8 Days Later – the Hospital Stay

Hell’s Carousel

I ended up seeing my rheumatologist sooner than expected, before my lab work was even done, because of some severe pain issues that landed me in the ER. I was livid, to say the least, when the ER doctor suggested that the reason I  was having such bad pain, was that I was stressed. My pain tolerance is very high, so the fact that I was contorting my body into insane positions to try and make myself comfortable for even a few seconds, definitely says a lot. The nurse felt around, and I had some major pain, but the doctor didn’t even bother to do anything other than listen to my lungs.

Now, I know I couldn’t get a CT or an X-Ray (I’ve gotten way too much radiation already this year apparently), but that doesn’t mean that I should just be ignored. Tell me the options. My labs were normal, including urine, which surprised me, because I really felt like my kidney was on fire. I will credit the doctor with at least saying I should follow up with primary care and my rheumatologist ASAP, but that is offset by the rest of the things that went wrong.

Despite telling the nurse that I am very sensitive to pain medications, and really would only need a quarter of what they give someone normally, I was given a massive dose of Dilaudid.Worse? It was coupled with a decent amount of Ativan. All given…IV.

My pain was gone, but I was grateful for the Zofran I’d gotten beforehand, because the room was spinning. I had a few moments where I was okay, but the rest of the time it was absolutely horrific. I knew it was a Saturday, and that the ER was busy, but I’d gone in earlier to try and avoid that. (I’d also suffered through the pain on Friday night hoping it would go away.) After only half an hour or so, the nurse came in to discharge me. I couldn’t walk. I couldn’t remember my address. I was given a little longer, maybe 15 minutes, and then told my only option was to take a blanket to the waiting area and sleep it off out there.

They tried to send an immunocompromised patient…to the waiting room…to sleep…

I dragged myself wobbling out towards the exit, and managed to get into a Lyft. I was nauseated, but made it home, where I spent a long time on the bathroom floor shaking violently and nauseas, with cold sweats and the spins. My friend said it sounded like withdrawal which is ridiculous given it was one dose, but she had a point. It was like my body was displeased with the amount of drugs it was given, and because I metabolize drugs quickly, it was extra displeased with how fast those drugs exited my system

Anyhow, I white knuckled my way through Sunday courtesy of Norco, even spending some time at a pool party. I told myself that the pain was a fluke even though it periodically kicked up from time to time. Then Monday came, that was the day I was seeing my rheumatologist.

The appointment seemed futile. She told me that my kidney pain was odd, but likely not related to Behcet’s as Behcet’s doesn’t impact the kidneys. (Not entirely true, but I wasn’t going to correct her. The rarity is what it is, so I guess I just went with it being highly unlikely. We talked about how I’d been feeling, and that while I had a lot of of the major symptoms under control, the GI bleeding that had returned was obviously concerning. Also worrisome were the skin manifestations. While mild, and short lived, it was an indication that the Rituxan alone wasn’t enough to keep my Behcet’s at bay. My inability to stomach medications was making my treatment complicated. She prescribed Cell Cept (Mycophenalate), which I’m starting Tuesday. I wanted to start it sooner but I just couldn’t risk the stomach issues because I’m starting Ketoconazole tonight, and that is rough on my stomach. I’ve also been prescribed Cymbalta (despite the increased seizure risk) because of the depression caused by ironically my seizure meds. I’ve taken it before without issue, seizure and stomach wise, but my stomach has been a mess lately and I wanted to space out the new drugs.

What she did mention nonchalantly was that a CT scan I’d had several months ago, when I was being treated for suspected kidney stones (blood in urine, potential infection because of white blood cells, but no bacteria). Apparently the radiologist had noted the presence of “medullary sponge kidney,” and left it at that. I’d been told at the time I had some renal calcification, which my primary care doctor had said could mean I had a stone, or I was forming a stone, but it wasn’t a stone itself. Basically he didn’t know, it just looked funny to him. Another doctor said it was totally normal. When I looked up “medullary sponge kidney,” I was floored. Apparently if I do have it, it would potentially explain a lot of my weird urinalysis results, and my recurrent kidney infections, infections I often get without ever having symptoms of bladder infections. It’s why I don’t just umbrella everything into UTI, because for me there is a difference.

The next morning I got up early and the back pain was back was absolutely insane. I go to the bathroom, and try and get back to sleep since I don’t have to be to my primary care doctor’s office for a while, but I can’t get comfortable. I’m convinced I’m not going to make it, that I’ll end up needing to go to the ER, because I’m in that much pain. I popped a nausea pill, unable to take Norco because I planned on going to see my primary care doctor, hang around that part of town for a couple hours, and go straight to my psychiatric medication appointment. Now I’m thinking I’m going to just sleep in the shower.

I got in, and the warm water felt amazing. I tend to sit on the bench I put in my shower, or just sit on the floor of the shower itself because I don’t have the energy to stand when it’s too hot. As I’m sitting on the floor the pain comes back and I can’t do anything but brace myself and kind of yell. (Thankfully the roommate was gone.) Suddenly I needed to pee, which annoyed me since I’d just gone, but I went, and the pain was oh-so-familiar. Of course at the time I wasn’t thinking, “This is what it felt like when I passed that kidney stone a while back.” No, I was thinking, “Make it stop!” For a moment I thought I was going to pass out from holding my breath, but then, the severe pain was gone, leaving an achey trail in its place. I put my hands down and shouted, because something pointy jabbed me in the hand. That was when the realization, “Oh shit kidney stone,” came to me. I tried to find it in the water, but it had already moved towards and then down the drain. To this moment I think about how it felt to get stabbed in the hand by that thing, and the fact it was in my kidney and ureter. 

My doctor was nice, agreed it sounded like I’d passed a stone, and also agreed that the lingering pain could be from the stone, or potentially a second stone. He also stated I’d been through way too much radiation to do imaging studies, and if the stone I passed was small, and I was still urinating and feeling okay, that there wasn’t too much to worry about. We talked about my Behcet’s and he didn’t want to add any labs. I got my steroid injection, by the medical student, who was kind but really sketchy with the needle. Both my doctor and the med student tried to adjust my back. My doctor got it to crack a few times, but I finally had to tell him to stop with the lower back attempts. I was in too much pain, and I really needed to not vomit because I had things to do that day.

The psych appointment was irritating. I’d been mislead at the first appointment by being pawned off on the nurse practitioner, probably because of my insurance. She was nice, so I figured it would work out for therapy, and for med control, a kind of 2-for-1 scenario. Only, I find out, she doesn’t do counseling. She’s strictly meds. Worse for me? She doesn’t want to do Xanax or Klonopin either, despite my insistence that I’ll still need it on an as needed basis. I also remind her that I’ll need to taper off because I’ve been on it for a while. She asks if I really want to keep taking my sleeping medication, if I’m having to add Klonopin to make it work. Um, yes? The reason it isn’t as effective is that I’ve probably gotten use to the dose. I’m actually only a step above the lowest dose, so if anything, I want a higher dosage.

Then it happened, the thing we all dread, but in reverse: she suggested that my depression was a result of being in pain, and attempted to prescribe Lyrica, even though it would mean discontinuing my Neurontin which as worked for a variety of my issues for years.

I’ve had doctors suggest my pain was from my PTSD, or general stress an anxiety, but this was new to me. A reverse situation. Yes, my illness contributes to my depression, but not significantly enough to warrant medicating me, especially if all you’re trying to treat is anxiety and pain! Plus, I’m not in that much pain, minus the kidney stone situation. My daily aches are fine, it’s the nausea that bugs me. We went back and forth for a while, because I was adamant that she understand my pain and health were not the main issue, my Keppra was, and that I needed something for depression and maybe a little anxiety, but that I didn’t need it because of the Behcet’s alone. I ended up with Cymbalta, despite the warning of lowered seizure threshold. I was getting aggravated with her other suggestions, drugs to treat things that she wasn’t being asked to treat, in an attempt to make me feel better overall.

I’m struggling with severe depression that comes and goes because my medication to prevent seizures is changing my brain chemistry. Give me something to counter that, please and thanks.

Now it’s all just a mess for me. I don’t feel well. I’m starting the Mycophenalate on Tuesday. I’d start it sooner but if it does give me diarrhea it’ll ruin some plans I have. I’m just wondering where it all comes together and falls apart I guess. There was talk of research clinics, and while I want that before I consider full chemotherapy, I wonder if there is something weird with my Behcet’s. It’s like a weed that won’t die completely. It’s been dented, but it still continues to be a pest.

We’ll see what the blood work says. The steroid shot immediately cleared up my facial break out, but the fatigue lingers like a plague.

 

 

 

Hell’s Carousel

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