Day by Day

So perhaps my celebration of remission was a bit premature. I’ve been told I’m in remission, but that my disease was essentially so severe prior to Cytoxan, that I will need to stay on immune suppressing drugs…forever. I start Cell Cept on the 17th of this month. I’ve taken it before, with some nausea, but the hope is that my immune system is healed enough to tolerate it now. I’m still optimistic, albeit I remain guarded.

I’ve gained 40 pounds since the start of chemo, and I’m planning on losing some of the weight, and replacing some of it with muscle. Today I ate broccoli, carrots, and cauliflower, without issue. I’m still lactose intolerant, which wasn’t a huge shock, but that’s fine. My neurological issues persist to some extent, and I’ll be having an in home 3 day EEG to figure out if there is any obvious underlying abnormality in my brain. There have been some issues with my heart rate and blood pressure, so my neurologist has suggested not over exerting myself, or overheating.

The neurologic issues have been the most aggravating part of everything. I had convinced myself that it was all tied into my Behcet’s, and that once I finished chemotherapy, I would have no lingering symptoms. Now, granted, I just finished chemo three weeks ago, and my last seizure was one week ago, I’m still frustrated about what my neurologist said this past week. Simply put, he doesn’t know why I’ve continued to have break through seizures, but the suspicion all along has been some sort of autonomic nervous system malfunction.

I still struggle with hyperactive reflexes, though perhaps struggle isn’t the right word. I still have hyperactive reflexes, which is really awesome in terms of pursing a diagnosis. So many neurologists and ER doctors have suggested that I have pseudo seizures, and that my issue is psychological. You can’t fake reflexes…they’re literally reflexive. Prior to and following my last seizure, my reflexes were completely spastic. Simply touching my legs would send my muscles into an all out spasm, and they’d lock down. It’s hard to explain to someone what it’s like, other than you literally lose control of your limbs. I was really afraid I’d end up unable to walk like I did a few months before starting chemo.

So yes, I’m a remission of sorts. I can eat. My ulcers and other lesions are gone. I’ve begun going to the dog park, and hopefully I’ll be heading out for fun in the near future. These things are all happening…and yet there are concerns, too. I’m thrilled my hair started growing again, but sad that it is only an inch long. I worry over water consumption because I don’t really know what is triggering my seizures, or if I’ll be okay on my new medications. Each ache, pain, or exhaustive day, makes me worry remission isn’t here, or worse, that I’m heading towards a relapse.

There is so much unknown about Behcet’s, and even less about my neurological status. I’m happy, but I’m terrified, too.

Day by Day

Round 5: Cytoxan … My Body is Pissed

I get anxious before everyone round of Cytoxan, and there isn’t anything I can do about it. Think about having the flu, or a stomach bug…now imagine you knew it was coming, and that there was nothing you could do to prevent it. You’d be anxious. I promise you’d be anxious.

So the guy agreed to come with me this time, and a friend came with me, too, which definitely made me slightly less focused on the impending misery. This time they did give me the Ativan, which helped, but I pushed myself a bit. Having a friend in town, I wanted to go eat after chemotherapy. I kept everything down, but I was just so tired. Then I woke up the next day, an I was nauseas. This pissed me off because usually I have 24 hours before the nausea kicks in.

My infusion was on the 16th, I spent the 17th and 18th miserable. Now it’s the 19th, and I’m even more nauseas. It makes me angry, because I need to drink water to combat the nausea, but I can’t drink, because I’m so nauseas. The guy has been beyond helpful. I’m crashing with him while I apartment hunt, though I’m not planning on staying here exclusively. He’s kind, and I don’t ever want to take advantage of his kindness. He’s heading out of town for a few days, then he’ll be back, then gone again for a business trip. I’m trying to plan a visit to another friend, and day trips, but my bod is pissed.

Being forced to move during chemotherapy was a major hurdle. The guy and a few neighbors helped me lao up a U-Haul, and the guy and I unloaded it into a storage unit. My anxiety was through the roof during the entire process. I kept worrying that having me in his space would drive him nuts, but thus far it’s been okay. I’m really not a difficult person to have around, minus the dogs and the chemo induced comatose mood. Still, the anxiety existed and made going into this round a bit more aggravating.

I had a seizure Monday, and then chemo on Thursday. In the ER after the seizure, the doctor discussed my autonomic neuropathy, and the potential link between that condition, and my seizures. The day of the seizure I hadn’t had anything to eat or drink, and was exhausted from lack of sleep. I always just assumed that seizures could come up from that alone, but apparently the thought process of my neurologist is that these things are tweaking the autonomic neuropathy. The chemotherapy can also aggravate it. My primary care doctor refused to treat my blood pressure because having it be high is preferable. Medicating me could result in dangerously low pressures, which has happened before. My low pulse rate at night also makes over-medicating me likely, and dangerous.

Today, I’m way too nauseas to function. I just hope I can drink some water, eat some Italian ices, and skip to the next set of symptoms. I have discovered the wonders of edible marijuana, but the taste is rough on me. Right now it’s a circle of zofran, phenergan, and marijuana.

Round 5: Cytoxan … My Body is Pissed

Round 4 of Cytoxan, Disability, Learning to Cope

Life is complicated. Chronicle illness is complicated. Relationships are complicated. Divorces are complicated. All of these things mixed together, are extremely complicated. I’ve been trying to get divorced since August of 2015. I got a lawyer in October of 2015 to move things along. My impending legal bill alone is terrifying. Even if we go months without doing anything together via phone or email, it’s not like he isn’t working on the case. After the failure of round 2 because of stress, I’d had enough, and I pushed his lawyer to serve me by having my lawyer initiate the discussion directly with his lawyer.

My marriage was hell, for a variety of reasons, and I refuse to let the divorce continue to drag on. I recognize the attempt to continue the pattern of abuse and control, and I won’t allow myself to continue to be victimized. I have a lot of things on my plate, and after the issues I had in December with the flare and anxiety, things came into focus. My health is too fragile, and too important, to let anyone jeopardize. I am not going through chemotherapy because it’s enjoyable, I am doing it to save myself from potentially dying from complications of my Behcet’s disease.

This may seem melodramatic, but as treatment has progressed, there has been discussion amongst myself, my rheumatologist, and a variety of specialists. The level of disease activity I had prior to beginning treatment was staggering. I knew at the time I was sick, of course, because I was in the hospital. I lost the ability to walk. I repeatedly seized. Things couldn’t have been a whole lot worse at the time, but I didn’t really think a whole lot about what that meant long term. The immediate picture was more important than the long term outcome. Now that I’m doing a treatment aimed at hopefully putting me into remission,  the discussion about what that means has started to take place. I’ve had to accept limitations I didn’t want to accept, accept help I haven’t wanted to ask for, and accept that I can’t continue to let negative people impact my life. I can’t afford stress and anxiety, because remission is a whole lot harder to achieve and maintain, when you’re in a bad place emotionally.

That being said, remission for me apparently isn’t the most likely scenario, at least not a permanent remission. While many Behcet’s patients see a decrease in symptoms as they get older, and with treatments, patients like myself who have had severe disease, often have periods of relapse. This may not be my first round of Cytoxan, and even though I get a break after round six (they can only do six months at a time), I may find myself having another round at some point.

I don’t want it to come off as though I’ve given up hope, because I haven’t, I just understand the importance of being realistic. In addition to the Behcet’s, my neurologist has mentioned that I have autonomic neuropathy, the cause isn’t clear, and the full impact can’t be assessed until I’m done with Cytoxan. One positive to my high blood pressure is that this is potentially keeping me from experiencing super low blood pressure, as is common with the condition. On the flip side, I do have issues with my heart rate, dizziness, sweating, heat tolerance, etc.

This most recent round of Cytoxan was the worst feeling, but one of the better ones in terms of my numbers. I did go to the ER, but not by ambulance, and I didn’t have to stay overnight. Just got some IV fluids. I did have to call the guy to help me when I ended up throwing up in my apartment complex’s lobby restroom…but I did make it to the restroom, and my service dog in-trianing, did phenomenal at supporting me during the process. We were just going for a pre-bed walk, and he immediately became alert and glued to me as I started lagging. He helped me stay propped up, and pretty much refused to let the guy help me alone…insisting on staying at my side.

I have two more rounds. I don’t know where I’ll be living in three weeks, just that I have people who have graciously said the dogs and I are welcome to couch hop while I find a place, and save up the funds. I wasn’t prepared financially for Cytoxan. I figured I was fine because of disability and separation payments, but I hadn’t accounted for how much paid help I would need that my insurance wouldn’t cover. Now I know, and can plan that cushion into my future dwelling plans. Of course I also have credit card expenses to add to my monthly bill.

That brings me to the topic of disability. I asked my doctor to write a letter for my lawyer regarding what she felt was realistic in terms of my long-term disability situation. She had previously stated she was in support of me applying for permanent disability, but for some reason I hadn’t really thought much about what that actually meant. I had took it to mean that she foresaw my disability situation as lasting longer than short-term disability would allow for. Never did I actually think she’d state that I would be disabled for at least another 6-12 months, with my return to work only ever being part-time. I believe her actual wording was that she didn’t believe I would ever be able to work more than a part-time schedule due to recurrent relapses, and difficulty with fatigue.

I wish I could lie to myself and say that she was just being nice because my ex has made the divorce process such a nightmare, but she doesn’t lie about illnesses for any reason, and she definitely wouldn’t lie on a legal document. While she isn’t a fortune teller, and I could reasonably work full-time if I made sure to take care of myself, and rest, it did slap me a bit…and I needed it. I’ve been clinging to denial because it’s easier when I find treatment depressing. Sure I’m seeing the guy, but I’m not officially dating him, or anyone else, and there are moments when I lie to myself and I say that things will be categorically better once I’ve finished Cytoxan. The reality is I don’t know what will happen. I don’t know what symptoms will be controlled and what symptoms won’t be controlled. I don’t know if I will relapse and need more Cytoxan, or if I’ll have to suck it up and deal with long-term oral chemotherapy (somehow), despite my GI issues. Endoscopies and colonoscopies are still in my immediate future, I still need to have my neurological function examined, via prolonged EEG readings, and a sleep study, as well as consultations with neurology and cardiology for my combined symptoms related to what has been dubbed “autonomic neuropathy”.

The most eye-opening thing has been being forced to stare depression in the eyes. As someone who has had PTSD for a decade, I’ve become extremely good at living in disassociation. Like most people, I don’t enjoy bad feelings, but unlike most people, my brain can go on autopilot, and I don’t have to process those feelings. You may think that means I appear bubbly all of the time, but that would be a dead giveaway that something is wrong. Instead I appear somewhat cold and clinical, being overly analytical and logical, when others are happy, sad, and whatever else they feel. Part of the art of dissociation is realizing you have to give up all emotional extremes, positive or negative.

Well…Cytoxan (in my case) makes this impossible. In order to combat my crippling anxiety over the infusions themselves, and my body’s irritation at receiving IV steroids and nausea meds, I get IV Ativan. This round they actually forgot the Ativan, and as soon as they gave me Zofran and hooked me up to the steroids, I thought I was going to throw up. It was really weird because they hadn’t started anything else, and they couldn’t figure out why the Zofran would make me nauseas, but my body really hates IV anything. I wasn’t anxious, but I really didn’t want to throw up. Then they realized they hadn’t given the Ativan, and as soon as it was pushed, within a few minutes, I was fine.

The issue with my cocktail, however, is that I get loopy. Really loopy. I lose the ability to pretend I’m fine when I’m not fine…and I also get really emotional from the Cytoxan itself. The nurses have said that the drug can cause emotions to run wild, and that combined with the Lupron and the other pre and post infusion medications, it’s totally normal to become emotional. The thing is, I feel like I take it to another extreme. Since I’m not used to sitting with my feelings, and because I’m unable to do anything but sit, I go completely nuts. Usually I get home before I cry, and usually I don’t get emotional until the next day…but this time around I started to cry during the infusion.

So, the guy is sitting there with me, and we were going to play a boardgames, but he’d gone to get a sandwich and then had taking a short nap or something in his car (I can’t really remember), an I had dosed off in my chair, only waking up around the point when he came back. Now, he’d probably only been gone for half an hour, but somehow I got in my head that he’d been gone for an hour, and I don’t know if it was before or after he had mentioned he was going to go out that night, but I started sobbing. Now, let’s be clear, I was fine with him going out, and I was fine when he opted to go back to his place instead of come back to mine. I wanted to avoid him seeing me throw up if I threw up (which he ended up having to practically carry me from a public restroom a few days later when I pushed myself too hard…but anyhow…)

Yes, he was there, with me, and I’m bawling. I have no reason to cry. Nobody said or did anything to instigate me, and yet, I was sobbing. When asked what was wrong, I instinctively went to say, “nothing,” because I knew my tears were not logical, but instead I launched into a diatribe about my worthlessness. I started going on and on about how I was sick of being sick, and how it wasn’t fair that he had to be there with me when he could have been home getting work done, or doing something else fun. I started talking about having to schedule plans around appointments and infusion, and about losing my hair. My hair. I was crying because for the first time since shaving it, I was genuinely upset about it…and it has started growing back anyhow. Yes, that’s right folks, my hair growing somehow made me think about how long I wanted it to be, how long it would take to get there, and how horrible I felt with it being short. I also was upset about gaining weight, even though I needed to gain weight, because now I was worried about being some short haired fat girl.

What. The. Hell…

The guy and the nurse both assured me that it was the drugs causing this whirlwind of emotions, and that once I felt better I would emotionally feel better, too. It took almost a week, though. I’ve sat with a lot of the emotions that hit me that day, and the subsequent days, and I’ve realized that it’s okay for me to feel how I felt, even if the situations I was upset about didn’t warrant that level of emotion. All of the things I become upset over are valid. It does suck to be unable to work, to have to wear a mask in public, to miss out on events and get togethers, and to be forced to rely so heavily on friends. I am not a dependent person, and I’ve driven myself poor trying to pay for help so that the people I care about wouldn’t see just how sick I truly was. Now I’m realizing that the good people would have helped me if I’d asked, and they wouldn’t have considered it a burden to do so.

My past has created this guarded independent woman, who wants to love and be loved, but who doesn’t feel capable of being loved. My self-worth is disturbingly low, and I want to change that. I want to love myself, flaws and all, and to truly believe that I am lovable. I keep saying that I’ll work on it once I’m healthy, but seeing the disability letter has forced me to take a step back and reevaluate. Why wait until I’m healthy? My ailments don’t define me, even if they do change the way I experience life. Can’t I be sick, but lovable? I’ve been taught that it’s better to be alone when your health problems are the way mine are, because if you are with someone else, you become a burden…but why does that have to be the narrative I run with? Couldn’t I just as easily focus on the things I have to give instead of focusing on the things I have to take? Aren’t all relationships, romantic or otherwise, a combination of give and take?

Learning to cope is more than just learning to live with the physical limitations of my illnesses. I have to learn to cope with the emotional fallout from them as well. There is anger, depression, and anxiety. I had always assumed that having PTSD would mean I was able to handle the mental impact of my illnesses, but there is a huge difference between the way my PTSD symptoms hit me. With the PTSD I can recognize that my emotions are not rational in proportion when you compare how I feel with what is actually happening. With the emotions tied into my health, things are way more insidious. I don’t feel extremely angry or depressed or anxious, and so the emotions are often suppressed by me, unconsciously or consciously…which is a mistake. I need to own them, and handle them. This is important for my well being all the time, not just because I don’t want to end up sobbing at every infusion.

As I move towards homelessness, and couch surfing, I have to recognize that it could take time to find a place that works for my budget and my pups. I have to accept help from others without feeling as though I’m a huge burden. I have to stop feeling guilty about taking help. I know all of this, but I also know that I’m not wired of any of that. It will be work.

Step One: Breathe

Round 4 of Cytoxan, Disability, Learning to Cope

Fear and Depression

First, this won’t be a totally depressing post. I am happy that I have a treatment protocol and path to potential remission. That my doctors are listening now is a good thing. I am, however, terrified about a lot of things. My life seems to have spiraled lately and I’m trying to grasp at the positives while accepting that things will just suck for a bit.

My lease is up in mid-March, and chemo is planned until April. My roommate and his girlfriend seem to be stepping things up, and I’m anticipating him wanting his own place, or potentially moving her here to be with him. That leaves me homeless, sans roommate, and at the tail end (hopefully) of chemo. Living here is expensive. I could swing a studio, with alimony and disability, but I don’t know if I’d qualify since the income requirements are what they are. I’d have to start looking or a roommate ahead of time, mid-chemo, and that’s not an easy task. Most of my friends are married or in relationships that are moving towards cohabitation.

It isn’t that i don’t want to live alone, I could make a cute studio work, it’s just that my income will never be however much it needs to be to qualify. Even with the guaranteed income of the alimony (if the divorce is finalized) and disability (if that gets together soon) doesn’t mean the complex will take me. I could talk to my current complex about the rates on studios, but I suspect that they’d be expensive, and honestly, I’d rather live a block or two over. Obviously I’d give up location if necessary, but living here gets me out more often which is nice.

I think the moving factor has stirred up a lot of latent stress, too. I am okay single. I prefer not to be, but it’s not a codependency thing. I’ve learned through illness that it’s okay to ask friends for help, but I’ve also learned that I can handle things on my own. There is no shame in dialing 911, and there is no shame in ordering groceries because the thought of the store makes you clutch the toilet. With chemo looming, though, I worry again about caregiver fatigue. Most of my caregivers are in serious relationships, and have to drive a ways to get to me. The others have sort of faded as my health needs increased, despite me refraining from asking them for assistance.

Life is complicated, and I don’t know much. I know I want to work in a laboratory field, preferably DNA or genetics and in research. I know I would love to have children someday, but that gets hard because I’ve had to recently accept that those children may not biologically be mine if I need to use an egg donor.

The biggest thing is the thought of coming home alone. I’m an introvert, and I need my quiet time and space, but I thrive on having someone in my life that I care about and who cares about me, too. It’s not about labels. It’s not about plans for engagements, or weddings, or anything like that, it’s just the connection. If he has a bad day, I’m there, and if I have one, he’s there. We do our own thing, but at the end of the day there is someone there to cook for, to cuddle with, and to lean on.

With my failed marriage it was one sided. I was the one that was there, always, even as someone to abuse. I still cooked, showed affection, did the things you’d expect in a loving marriage, because that’s who I am. Now without him, I’m stronger, but I still crave those activities. It isn’t about codependency, but my own drive to be that person for someone, and to have them respond in kind.

Chemo scares me because I worry it’ll be a while before I can truly date, and I worry that finding someone who is similar to me will be next to impossible given my physical challenges, and illnesses. I’m not discounting the guy, he’s obviously still in my life, but I’m not putting pressure on him because putting pressure on people is absurd. We both knew that this was casual, and while we’ve become best friends, he doesn’t know what he wants, and just because I do know the outline of what I want, doesn’t mean he’s required to conform to it. People need to follow a path to happiness, and if you’re included in anyway along that path, be content. I’m happy that he’s happy right now, and it’ll work itself out, and we will always have our friendship.

My age tweaks me out, too. I’m 30. By the end of chemo I’ll be 31, or nearly 32. I can’t help but do the math on finding someone who wants me, despite my flaws, and that includes the health ones, who also wants kids, but is okay with the idea of egg donation if it comes to that. When do I become a mother? It isn’t like I have a timeline, but when you know chemotherapy fries your eggs, you have to wonder how many do you have left before premature menopause kicks in?

Lonely. Afraid. Depressed. I can be in a crowded room, and get lost in thoughts that throw me into a tailspin. I feel bad because the guy can see it, and I can’t hide it right now. The treatment is as scary as it is hope inducing. I’m not open with him regarding the full extent of the reasons, but that’s because he’s a fixer, and I don’t want him to feel obligated to find me a place to live, or back off of what we have so I can find someone to fill the roles that I’m craving. Now isn’t the time for me to find a partner, it’s time for me to focus on getting well. He makes me happy, and that helps me feel better, which is more important at the moment. There may come a time when we have to evaluate what we’re doing, if we’re sacrificing things we know we want because we care for one another, but not in the way that we need, but for me the time isn’t now.

Life is a mess. It can be beautiful, but it’s still a mess. Like just now, I took a 20 minute break because there was a fire call at the building across the street. The dog, suspecting the emergency services (and there were a ton) were here for me, immediately needed to be outside. It was drive I couldn’t deny him. He has to learn the difference between my emergencies, and emergencies in general. It took pacing the street for him to realize I was okay, at which point we came back, and he went into his crate to sleep off the stress.

Stress. It make me angry. I stress out the people who care about me, my friends, my family, though mostly my friends. The guy says I can call and talk to his family for support, but the truth is I don’t know what that is like or how it would feel. Plus I’ve never met them, so talking on the phone would feel weird. My mother only texts me, and my dad calls but not often. Support from my dad comes in the form of jokes, and being told to stay tough. My mom is dubious, and completely off the deep end about all of it. I guess years of denial regarding my health status have caused a complete breakdown in terms of dealing with reality. They don’t give chemo to healthy people just for fun.

I know what I want doesn’t matter in terms of my health, because what I want is to say screw chemo. I want to take the vacation, or a vacation. I want to run away simply because I can. I want to go with the guy on a business trip overseas, despite the risks, just to say  I’ve been somewhere different. Screw not having an updated passport, I’ll rush it! I want to ignore the increasing symptoms, the miserably pain, vision issues, and GI symptoms. I want to pretend my skin isn’t covered in sores, and that my hair isn’t falling out in clumps. I want to wear a wig and pretend it’s my hair, and not tell anyone the truth.

Instead I’m planning for chemo. I’m lying to friends and family about how positive and optimistic I am, because that’s the girl I created. So many times I’ve said that this treatment will work, only to have it fail, and I gracefully accepted defeat (in public) then sobbed in the confines of my room. I’ve admitted I’ll need help with this treatment. I know my body will be beyond unhappy. I also know that what I want isn’t what I need, and that the life I want to to live is being lived by others right now.

The physical pain detracted from the emotional pain for a while, but I’ve grown used to the physical pain. Now I’m juggling both. I wake up and I can’t move. My neck feels like it’s full of glass, and worse, when I move it I could swear it was broken or breaking. Every joint hurts, though lately the back pain has been so intense I’ve questioned my kidneys. I’ll buy a urine test kit tomorrow to make sure nothing is infected. With each pain I tell myself this is why I need chemo. When I can’t eat, go to the bathroom normally, or see clearly, I tell myself that this is why I need chemo. The unseen damage to my brain and nerves, the drive for a life, THIS is why I need chemo.

Still, what will chemo steal? Why is my ex moving forward and on so quickly, while I’m being handed what feels like a universal punishment. What did I do? Nothing, of course, but it still feels like just maybe I did.

All I want is someone to come home to. Someone who is there, for me to comfort, and for me to give comfort to. I’m not codependent, I’m caring. I thrive off that integration, despite my introversion. I don’t need love, not if they’re not ready, but I’d love closeness and understanding. I’d love having someone who knows I have them back.

Instead I wonder if I’ll have to move away, to a more affordable town. Start all over. Bald, but hopefully in remission. Wishing that things could have been different here, that I could have built a better life. Maybe remission brings better things. I don’t know. I just want there to be hope beyond this.

I want someone to hold me, regularly, and want me, despite my flaws.

Fear and Depression

Caregiver Fatigue

I constantly worry that the people around me are sick of me being sick. Hell, I’m sick of being sick, and even though I don’t ask for help, people step in and help when it’s obvious I need it. Still, people get tired, especially when it’s the same people being forced to assist over and over again. Okay, so they aren’t forced, but certain friends step up more than others, and patterns emerge.

The guy has been a consistent shoulder to lean on, and someone who always runs to the store for me, or even more impressive, sits with me, through whole infusions. That being said, he’s been there even when he had to drive to me. Now, he’s within walking distance, and the general assumption of friends is that he is going to be the one who is there for me through the majority of my health woes. WRONG. 

Yes, he could and would be, but it isn’t like I expect him to be. Why? For starters, I don’t expect anything from anyone. My philosophy is that people should help because they genuinely want to, not because they feel pressured by societal conventions to do so. If I were someone who gave into societal conventions, I wouldn’t be calling him “the guy” after over a year of whatever it is we’re doing. He is a great friend, one of my best friends, if not my best friend, and while the whole situation is complicated, it’s worth it in the end.

Still, it makes it hard to explain to friends why the guy isn’t going to do this or that for me, or why I refuse to ask him to do something for me. I know it brings him down when the symptoms or treatments make me sad or super sick, and he has a lot going on in his own life to deal with. Not everyone can take care of someone chronically ill, especially when the symptoms can be intense, and not have it negatively impact them. All caretakers eventually get worn out if the person they’re caring for is someone they genuinely care about.

Last night I wanted to go out, but my body refused to comply with my brain, an I knew that I would probably pass out, or worse, have a seizure, if I pushed myself into a crowded bar. The guy as having a flare up of his own issue, and I opted for a low key, dual digestive issues cuddle fest instead. (I know it sounds gross, but it was fine, trust me.) Today I woke up in more pain than I’ve been in in a long time. I actually had a decent period of time here moving my head was physically impossible. Then the guy woke up, and he was also in decent abdominal pain. My dog made it clear he had to go out, and the two of us were there, in bed, wondering how we were going to deal with this little dog’s insistence. I knew that he was my dog, my responsibility, and that at the end of the day, moving a little would help me determine the severity of the joint pain. I used it as an opportunity to get the guy some things he needed, and the dog some things he wanted. (I forgot to get my own caffeine which really irritated me, but allowed for a nice three hour nap upon my return.)

The result of my expedition was the realization that my joint pain was legitimately not going to go away. I called another friend to get my prescription from my doctor as I was too out of it to take a Lyft or Uber, and then had my roommate pick the script up from the pharmacy across from my apartment on his way home from work. I could have asked the guy to grab it on his way back from the doctor, but I wanted him to be able to go to his pharmacy and get his scripts filled. I also wanted to prove that if I was incapacitated I had the ability to summon some assistance other than him.

While I may need him for general tasks like that sometimes, it isn’t what I need from him the most. What I need is for him to make me feel as normal as possible, despite the fact my body is giving out on me. I need what we have to be what we have, despite the fact my hair is shorter, or eventually gone. I need him to look at me the same way when my makeup is on, as he does when it’s off, despite the Behcet’s lesions on my face. I need our joking banter and light hearted conversations, along with the more intellectual ones, to continue, even when the brain fog makes the latter difficult to attain.

I need someone who makes me feel human and alive again.

Sometimes a caretaker isn’t someone who helps you with your dishes, or runs to the store for you. Sometimes it’s someone who ares for your emotional needs. The important thing is remembering that you are responsible for making sure you don’t drain them while they attempt to sustain you. I hadn’t realized for a long time that my illness was concerning him to a point that it made him anxious. He had a lot of people in his life with health issues or personal issues, and because he’s such an amazing guy, he was doing his best to accommodate them all. In turn, he wasn’t looking after himself. He laughs a lot at how often I worry about him when I’m at a constant 4-5 on the pain scale, but it’s the one benefit of living at a constant 4-5. I know how to cope and continue despite things that would trip up others.

People assume a lot about us, simply because he cares for me in a literal sense, and I don’t doubt that there is emotional caring there, too, I just try my best to steer people away from judgments based solely on what the see while I’m battling Behcet’s. He was still dating around until I got really sick, and I still worry that my illness has kept him from pursuing women and finding someone who can make him happy. Then again, the reason he’s still the guy, isn’t because I’m wrong per say, but because he isn’t sure what he wants. You can’t slow someone down if they’re already standing at a crossroads.

All of this laid out though, you have to wonder the toll it takes caring about someone, as a friend, and whatever else, when you find yourself being dragged into a caretaker role. One guy has continued reaching out to me, despite the fact we never actually went out, and despite the fact I’ve made it clear I’m not currently interested in seeing him. He’s tried to say he has cancer, and hasn’t had chemo but did and does other treatments, so he understands, but a lot of it seems like a ploy. Even if it weren’t, I don’t date more than one person at a time, I’m just not capable. (I don’t judge people who do, in fact, it makes finding the right person easier, it’s just not something I have ever had the capacity to do, and now I don’t have the energy for it.)

Things with the guy make me happy, and while I could use more friends, I don’t need friends who secretly want to sleep with me or date me. That’s not really the goal at the moment. Someone about to go through chemotherapy isn’t exactly at their prime dating potential. Sure, I could, but it’s cold and flu season, and again, I’m happy with my weird little thing I’ve got going. Why mess with a good thing?

There is also the fact that if the guy wasn’t in the picture, and I were to attempt dating, anyone who became my significant other would fall into a caretaker position naturally. That can destroy an otherwise promising relationship. I do not need to start something off with me puking my guts out and bald, though I suppose if they can get through that then the rest is smooth sailing.

I just hope that the chemotherapy isn’t overly taxing on the people around me. I’m prepared for hell, while hoping it isn’t. I’m also prepared to ask my doctors to admit me for a day or two if it turns out the drug makes me puke my guts out. Some people throw up and move on. I do not. Every time I’ve ever thrown up, it becomes a literal vomit fest. My dad used to hate when I’d get the stomach bug as a kid, because even as a kid old enough to attempt to make it to the bathroom, I would vomit with such force it would go all over the place. To this day I sleep with an empty trashcan next to the bed, and I have a set of blankets and pillows just for the bathroom floor. There is something about my system that doesn’t understand the idea of stopping once I’ve started. I’ve pulled muscles, popped blood vessels, and ended up in ketoacidosis…twice.

Tomorrow is the day I find out when I start. Everyone keeps saying “if you start,” but I know what the doctors have said, and the fact nobody was willing to call me tells me that the news is what I expect…chemotherapy. I just hope I can figure out a way to freeze my eggs before it begins.

Caregiver Fatigue

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