Cytoxan Round #3

Ugh. Ouch. Gurgle. Noooo.

That about sums it up. The process went really well, I only had to get stuck twice, but they did increase the dose. I was pleased to have manageable side effects during, but immediately afterwards I felt gross. I had a fever of 101, which I usually am around 97.3 (which was where I was before the infusion.) I knew I had inflammation issues, but they gave me steroids so I thought I’d feel better. Nope. My bones hurt. Yeah, my joints hurt, but literally, the BONES in and around all of my joints are just horribly aching. I’m dizzy. Now, several hours later, I’m definitely a little nauseas. Thankfully I ate when I cam home, so if I can keep it down, I won’t ruin the foods for myself forever.

I’d rather have pain, than nausea, so I am grateful in a sense, I just hadn’t thought I’d have the choice to trade…or that the trade would be so debilitating. It feels like my joints are falling apart, and the bones are just shattering to bits. That’s it, in a nutshell.

My pre-dose drugs are a bit different than the average bear, as are my during and post-dose drugs, but that’s because my intestines suck, and I can’t stay hydrated to LITERALLY save my life. I get 500mL before, then 1L during the infusion (they piggy back the meds with the fluids. before I get the Cytoxan I get Zofran for nausea, and Decadron (the steroid). I’ve been told varying things about why I get the steroids, but ultimately they help me with inflammation, and because I do have extensive drug allergies, putting that in my system is kind of a “better safe than sorry,” thing.

The one drug I get that other people don’t usually get in a pre-dose, is Ativan. Listen, I try to be tough, but chemotherapy scares the living crap out of me. I don’t enjoy any aspect of it. The first dose made me feel dizzy and nauseas pretty rapidly, and during the infusion no less, so I was sort of done after that. I’d gotten Ativan for my muscles to stop twitching (disease side effect) and it worked, so then they opted to keep it in my regimen for anxiety. They also added promethazine at the end of my infusion, so I could have that in my bloodstream for my short ride home. Hey, anything that allows me to drink more fluids, is a win.

This particular drug combination makes me sleepy. This is ideal. I want to sleep. I don’t want to think about what the drug is doing in my body, what I’m missing by going through this process in terms of school, a social life, and just being who I want tone, and I definitely, DEFINITELY, don’t want to feel any of the horrible side effects I tend to have with these meds.

Which brings me to a realization I just literally made with the last statement…side effects. Steroids tend to cause deep bone  pain for me. Some more than others, but it is an issue. Hopefully this will fade instead of worsen, though I have had intermittent bone pain 10-14 days after each infusion, so we’ll see.

I wasn’t a pansy, and went by myself for once. Well, I did try and pansy out and find someone to come, or pick me up, but it was for the best for me to face this alone. I need to rely on myself, while still learning to ask for help when I genuinely needed it. Sure I was afraid, and I wanted someone to hold my hand, or distract me, but I did take a nap. At the end of the day, it wasn’t a dire situation, and I have enough of those that I face alone as it is, so it makes sense to try and evaluate the actual need.

Depression and anxiety are still a thing. A major thing. I wish I could say that I had more good days than bad days, but I’m like a functional alcoholic at this point. I am profoundly unhappy, not nobody who knows me would guess that I’m a negative Nancy. To the people around me, I’m the positive girl. I’m handling my situation wit patience and grace. Above all, I take it day by day and smile.

Gag me.

Okay, maybe it isn’t that extreme, but let’s be honest for just a little while: nobody who is chronically ill, is also a diehard optimist who pisses rainbows all day everyday. It’s not physically or mentally possible. There is a difference between appearing positive, and actually buying into the things you’re saying. I fake it a lot, and a lot of the times I’ll end up in a better mood having faked my way into one…but other times I get even more depressed. I see the version of me people seem to love, and I die a little inside because that girl isn’t me.

Sometimes I cry on the floor in a ball. I scream at lab reports, and books about Behcet’s. I stare in the mirror and struggle to recognize the balding, often bloated, version of me that stares back. I get anxious about going out more than ever. It used to be a fear of vomit, and getting groped or drugged. Now it’s just wondering if my wig is going to fall off, or if I should be wearing a mask because of the germs. At least my fears regarding gropers and drink drugging have taken a hiatus. Nobody wants to touch and/or drug the bald chemo chick.

This is why I get asked a bunch of questions before my infusions. I get to talk about pooping with several nurses. Then I get to talk about my weird bruising. Then we chat about my battles with neuropathy. Then it’s the mental health assessment. Yes I take medication for depression…the anxiety situation is another story. technically my antidepressant should work on both. Hahahahaha, have the drug companies tested it on someone with my particular life configuration?

That’s the point though! My life is absurd. It’s absolutely mad. If I weren’t anxious and depressed, I would be certifiably insane, and worthy of institutionalization. 

My reality is painful. I don’t feel as though I will ever be truly loved, I don’t feel like anyone will want to live with me, share a life with me, and I’m not talking marriage, though I’m open to the idea if I found someone who wanted that…I just don’t personally think marriage is what should define a relationship. How two people treat one another is really what defines them as a couple. That aside, I can’t find myself being loved, being lovable. Sure, I’m kind. I’m not a bad person, but I have issues with depression, anxiety, and worst of all Behcet’s. I feel like the only kind of man who would “love” me, would be the caliber of man that my ex was. My ex is not capable of love. He lacks empathy. He can mimic emotions having seen them, but he doesn’t feel guilt or remorse like a normal person does. I won’t ever live that way again, ever, but that decision makes me feel like I will always be alone. Like women like me have to settle for poor quality men, simply because the good guys won’t settle for broken women like me.

It’s all deeply rooted in childhood nonsense, an I can reread it and realize how absurd I sound, but anxiety and depression don’t work off of logic. I’m anxious about living alone forever because I like to cook and clean and have someone to be there for, and have someone who is there for me. I also realize space is a blessing, and have always valued my own alone time, and the alone time of others. I am a good person, but I’m not good to myself. I know this. Changing it is the struggle. Trying to sort out wants and needs, all while feeling like you’re simply not lovable. It’s a horrible feeling.

“Nobody will ever love a sick girl like you.” The last thing my ex ever said to me in person. It replays a lot, but it’s not always his voice. It’s the voice of friends who have left me. It’s the voice of family members who judge my decision to slow down my graduate school coursework. It’s the voice in my head, my own voice, when I see couples holding hands and walking. It’s the voice of my depression, latching onto every ounce of venom in those words, words he knew would break me. He said it to crush me, for leaving him, but I kept walking. I didn’t humor him, give into the fight, and postpone my drive. He would have loved feeling like he won. Instead I just kept walking. I told myself that I wouldn’t believe, and I still hope that maybe someday  I won’t. Right now? It still feels pretty real, and it’s cold, hard, and hollow.

Cytoxan Round #3

Seiz(ure) The Day

I was supposed to go see a band play tonight, but now I’m pretty sure it isn’t happening. There is a point where the stresses of life become aggravating. What I want, isn’t what I have, and I struggle desperately to reign in my expectations. I don’t know if my roommate will want to renew our lease in March, and the whole situation has me pretty anxious. It would be easier not to move, but I’d be okay with moving…if I had an affordable place to go. The truth is that I love living downtown, for a variety of reasons, but the cost is problematic. I sold my car in a hurry, but didn’t get nearly what it was worth…only to have my ex decide he would keep paying me the money I rely on for rent.

My whole life I’ve pushed for independence, and now when I actually need to be independent, my body has given up. I know that I need to relax. I know that I need to sleep. I know that I need to listen to my body and let the chemotherapy do it’s thing. Knowing things doesn’t make acting appropriately any easier, though.

Things with my ex reached a boiling point last month, and while he has assured me he’ll be civil, I’ve been fighting the military to try and have something formally put into place. Unfortunately for me, they don’t want to get involved. It isn’t a civilian issue anymore, because he has pushed me into a flare with his nonsense. Still, they insist I need to run around to about half a dozen different locations to fight for access to the funds that I’m entitled to. It’s a joke. The military clearly states a bunch of things regarding separation and payment for spousal support, but then they go and enable the service member’s intentional lack of support. It’s absolutely disgusting.

Let’s be clear, too. I don’t care that my ex has a girlfriend, or that they’re supposedly having a baby. What I care about is the basic fact that he is paid more for being married to me, and that the military states he is required to support me despite the fact we are no longer together. I do take offense to the fact that this girl is living in what was our house, solely because I’ve been forced to stress over housing, enormously, while she moves in and acts entitled to things that are literally mine. I’m talking household items I was given as gifts or purchased for myself, that this girl is using as though she’s been with my ex for years.

I stress despite the reality that my debt is less than what most of society has. It stresses me out because I work hard to be debt free, for years, only to find myself accruing debt once I left my abusive marriage. Things I had to purchase because my ex refused to send me anything? I didn’t have the funds for those items. Add in medical catastrophes, and yo get my current predicament.

Last night I wanted to hang out with “the guy,” but I wasn’t feeling phenomenal. It sucked because I felt fine, ate, then felt sick, then felt fine, then as I left for his house, it was like my stomach went completely haywire. I didn’t dwell on the situation because I knew that I had eaten a big meal. Still things felt really off. We went to bed late, but I couldn’t fall asleep. My body felt weird, and my stomach felt off. Looking back I recognize the signs of a seizure coming on, but at the time I didn’t think about it. I haven’t had a full blown seizure in months, so I legitimately thought my stomach was acting up. I remember going to the bathroom, thinking I was going to throw up, feeling like I needed to lay down on the cold floor, and then nothing. There is a block of time I’m missing, about an hour and a half or so, and the rest of how I got back to bed etc., is fuzzy.

Nobody knows why I have seizures. For a while they thought it was psychological, but then I started having them while on various monitors, and they realized there were serious issues with my breathing and heart rate during and after. Codes have been called, drugs have been given, but I don’t remember any of it. I can remember the weird stomach feeling before, and sort of after if I’ve been medicated, but if I don’t get medication, I really do lose chunks of time.

I definitely had a seizure, and it upsets me for various reasons. The first is that I sleep better at the guy’s place, than my own. I honestly was looking forward to some good sleep given that I didn’t sleep while the night before. Hindsight? Not enough sleep and not enough water = seizure activity. I went to his place dehydrated and fatigued, and stayed up without water, just adding to my problems. The second reason I am upset is that I like spending time with him. He calms me. There is just something about him that brings me from an anxiety ridden state, to a calm one. I still worry about things like where I’ll live in a couple of months, but as long as I have him around me, I don’t dwell on it.

Then there is the reality of the things I miss out on because of my health problems. Tonight I should be seeing a band with my friend, but I won’t be. I could have gone last night, but I didn’t, and maybe it’s for the best. Still, I want to be the person I was before. I was exhausted, sure, but I was working and going to school. Now I can barely function for school, and that’s doing it all from home! Forget work.

There is this thought that socializing is this extra thing we do after we’ve done the things we have to do, but when you’re sick, socializing takes on an extra meaning. Things are taking from me one by one, and I clung to socialization, even though I’m introverted, because it was the last thing I could do to feel normal. Now that is falling apart, and I feel raw and exposed. Looking for another apartment, it’s so painfully obvious. I don’t have a job. I’m relying on disability, but I haven’t gotten my permanent disability sorted out yet. I struggle but the struggling gets me no where. I tell myself if I get that sorted out, then I don’t have to worry about housing, but that would only qualify me for low income housing. Here the low income housing options are sort of terrifying.

What I want has fallen away. I know I have to focus on needs before wants. That sucks. I’m almost 31, and I want to live the life I want to live. I want to go to school, and finish my licensure. I want to have my license, and a car. I want some semblance of normalcy.

My ex wasn’t right for me, who he was is someone who shouldn’t be with anyone. That being said, I would like to live with someone who enjoyed having me cook and clean. I miss it. Not him, and not our home, but the idea of a home. It’s silly to some, but if you knew me you’d understand. I was genuinely ready for marriage when I got married, despite how young I was. I’m still ready for that structure, living with someone, taking care of someone, but I’ve had to let it go. Who would want to live with me?

I know my ex was abusive, but I can’t stop pouring over those final words he said to me. He told me that nobody would ever love a sick girl like me. I know that they were words spoken to hurt me, and that I shouldn’t take them to heart, but they fester in my mind. I keep thinking about them at times like this, when I’m not the person I want to be, when I’m not doing the things I want to do. What if nobody ever loves me? What if my health is what it is, and I’m destined to be alone because of it? I have so much to give, but I also realize that my health is a horrible drain on the people around me. Even if I don’t ask for help, it’s obvious that I don’t feel well.

Just breathe, I guess. In and out…and hope that maybe it will all make sense.

Seiz(ure) The Day

Cytoxan: Round 2

Chemo brain is a real thing. 

I had my second round of Cytoxan on Monday, December 18th. After the last round a few things happened that changed the treatment plan slightly. First off, I was having pretty significant symptoms. My doctor ordered blood work for two weeks after the first treatment, and discovered that my counts were lower than necessary for treatment, and in reality, just too low in general. Instead of increasing the dose for round 2, she decreased it. She also was able to convince my insurance to cover Lupron, a drug that may increase my chances of remaining fertile post-treatment. I’m honestly shocked my insurance was willing to cover it, but insanely grateful. There are no guarantees either way in terms of fertility and Cytoxan. If you look at the dosage and odds, statistically sterility is common, but you never know if it’ll be something you have to go through or not. I didn’t want to take that chance. As long as the hormones in the Lupron weren’t going to make the chemotherapy less effective, I was willing to do the shots once per month.

People have told me that wanting children of my own someday is selfish. What if the child is sick like me? With all the autoimmune disorders in my family, how could I possibly want to have a child who could be ill? If I want to be a parent badly, I should adopt. Don’t I worry my body can’t handle pregnancy?

To all of those people: I’ve thought about all of those things! It terrifies me that I could give life to a child who has to suffer through the things my family members and I have suffered through, but there is no guarantee that my child or children, will be sick, too. As for the suggestion I should adopt, I’d love to, but it’s expensive. My health issues preclude me from being a good candidate. I am terrified my body can’t support a pregnancy, but that’s why I’ve taken a billion and one precautions to prevent it from happening. If and when the time comes for me to start a family, it’ll be extremely coordinated. There are no surprises happening here, because I’m responsible enough to recognize the risks. (I also don’t want kids this moment. I want to get healthy, and kick around some things on my bucket list dammit!)

So, back to round one…the low blood counts were accompanied by epic bruising, and hair loss. It came out oddly, as if it were shedding evenly, but then again, a few spots were shedding worse than others. If I had an itch, and scathe it, I’d end up bursting the capillaries beneath that area of skin. I was tired, nauseas, and none of the food I wanted tasted right. My mouth peeled and bled. I was in enormous pain. It sucked.

Round 2 has, thus far, been similar, but more mild. The fatigue is definitely worse than the last time, but the others symptoms have come predictably in order, without being as severe as they were during round 1. The abdominal issues are constant, and they suck, but I’m just sort of cramming calories in when I can, and letting my body do the talking. The mistake I made during the first round, was thinking I could coerce my body into doing what my mind wanted to do. A trip to the ER made it clear I couldn’t push myself.

This isn’t how Cytoxan is for everyone! 

My dad went through Cytoxan therapy, and didn’t miss a day of work. Never threw up, never had side effects that side lined him the way I have. Some people end up in the hospital. That’s just how chemotherapy is. Everyone is going to have a different level of reaction. The amount I received, for my weight, should have been manageable. For whatever reason, my body couldn’t handle it, and things started to go haywire. It sucked, but at least we’ve founds something that can go after my immune system.

I live in California, where marijuana is now just flat out legal…though you need a medical card to buy it. Instead of trying to fight through the nausea with Zofran and Promethazine,  I decided to really give pot a chance this time around. I have never been so grateful for a plant in my entire life. While the prescriptions work, they take longer to get into my system, and they aren’t as effective as the marijuana is. It’s just a flat out fact. I need to find the right strain, because right now a lot of them make me sleepy, but the facts still stand.

Today I decided I could easily live in a studio apartment, even with both dogs. Having spent way too much time confined to my bedroom, it dawned on me that having a space slightly bigger than this, with a divider for the living area, would be ideal. Smaller living space = less distance to travel for medications, food, water, etc. I don’t know what is going to happen when the lease is up in a couple of months, but I’m keeping my eyes open. Moving 5 months into chemotherapy would most definitely suck…but my roommate doesn’t seem to be in love with having me as a roommate, and I can’t blame him.

I am not a bad roommate, I’m just a spoonie who is learning to listen to her body and respect its limitations. He’s not a bad roommate, but he’s very outgoing and extroverted, with an aversion to blood and illness in general. I thought we would mesh on a science level, and maybe we could have, but it didn’t work out. We’re basically two people who aren’t friends, but live in the same place. It would have been nice to have built a friendship, but we just didn’t.

Round #2…ugh. At least I slept through most of it. After a ton of drama courtesy of my ex, there was very little sleep the night before. I ended up getting some Ativan for nerves, and that combined with the other meds knocked me right out. It was absolutely glorious. I needed the sleep, and more importantly, I wasn’t hyperaware of the changes in my body. (I tend to get flustered when my heart rate fluctuates, or nausea creeps in, instead of just accepting it. I don’t mean to get flustered, it’s just an uncontrollable response.)

Today is Friday, and my mouth hurts. A lot. It’s dry and peeling, no matter how much I drink. I know it’s the skin turning over, but knowing why it’s happening don’t make it suck any less. It’s kind of a cruel chemo trick…the second your nausea starts to fade, and your hunger creeps in, your mouth will be too sore and gross for anything solid!

Cytoxan: Round 2

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

Bronchitis Anyone? Graduate School and Work Problems, Too

Okay, so when I went to the doctor least week I expressed concern that my lungs weren’t lung-ing the way they should. (I’ve officially decided lung-ing needs to be a term.) I know I talked about the doctor saying my lungs were constricted, with the right side definitely having a harder time than the left. I left confident that my issue was simply inflammation, and I wasn’t catching my guy’s (note: this is how I’m choosing to refer to him, for now…the term is definitely going to to change because we’re casual, so the references will be too) cold.

Now, here’s the thing about having a chronic illness…you’re always sick. Seriously. I will never wake up and not have Bechcet’s. My dad is never going to wake up and not have Lupus. We may going into remission from time to time, but when you have a chronic illness, it’s *shocker* chronic. I have accepted this fact, but it’s made acknowledging when I’m actually sick (like normally people sick) difficult.

I spent Monday night at the guy’s place, after getting a new inhaler and thinking my problems were solved, but woke up on Tuesday with a brutal sore throat. I called my doctor, and he felt it was probably thrush, or the start of thrush, because I wasn’t rinsing and spitting after using the new inhaler. Fair enough. He says to call him on Wednesday if things get worse. Well, Tuesday evening I have to go to a mandatory meeting at work. The meeting was pointless for me, because none of my concerns were addressed. I’m pretty I sure they’re working on a way to fire me, and I just hope they don’t make me come into the office to be fired. I work from home, an email would suffice. “But they can’t fire you for being sick!” Theoretically that’s true, but anyone with a tendency to get sick, a lot, knows that employers find other legal ways to let you go when your illness becomes a burden.

In any event, I started coughing so hard before the meeting, there was blood. Yeah…tell me I’m not dedicated to my job when I show up wearing a mask, coughing up blood, and then go totally ignored when it comes time for suggestions.

Wednesday I call my doctor’s office as soon as I get up. I can’t breathe. The pain in my right lung that was in the lower portion, is now the entire lung, and I know I have bronchitis. This is how it goes with me. I have a day where I think maybe I’m getting a cold, but then bam, it’s in the lungs, and it sticks. I haven’t had just a cold in years, but bronchitis? This is my second bout this year alone. I show up for my 2:15 appointment, and I am winded. I’ve been hyperventilating pretty much all day because I can’t take a deep breath. Walking to and from my car is exhausting. My oxygen saturation is good, which isn’t shocking, because I’m doing my best to breathe however I can. I woke up that morning with purple nails, and I’m trying not to get back to that place.

Problem 1: my doctor is terrified of me. He’s a nice man, a good doctor, but I think having an immunocompromised patient terrifies him. Most of his patients seem to be rich older residents of the fancy community where I live, with a couple younger patients thrown in. Rare autoimmune condition patients? Not his strong suit. His medical students love me, but everyone seems to be fascinated and scared all at once. He is worried because of the Humira, that I may actually have pneumonia, despite the vaccine, or that I’ve partially collapsed the lung, or even have a tension pneumothorax. Basically, he’s freaking out. He wants to give me a shot of antibiotics, and order an x-ray, and the thought of having to walk to the adjacent hospital actually makes me want to scream…if I had air to scream with. He then decides he’s too scared when I tell him it’ll take me a while to get there, because I can’t go more than 10-15 steps without having to pause to breathe. This earns me a ride to the ER in a wheelchair courtesy of the medical student.

Problem 2: everyone fears you have tuberculosis. I don’t even know where I would get TB, but because I’m on Humira, and I’ve coughed up blood in the last 24 hours, and been losing weight, I am repeatedly begged to keep my mask on. Now, ER staff usually don’t worry to bad about the mask when you’ve got a cough, some do, some don’t, but I got my own room (bonus given the number of people there for GI issues).

Problem 3: I’m my best doctor. I get chest x-rays, and a liter of fluids which I begrudgingly accept since I definitely needed them. Between the time I got to my doctor’s office, and my discharge from the ER, I’d wasted over 4 hours…and I had a homework project that was due the next day, an extension I’d already been granted, but now would probably not be able to meet. Aggravated is an understatement, I was downright pissed. Worse? I didn’t want (or need) the antibiotics my doctor ordered, and I have no intension of taking the cough syrup with codeine unless it’s absolutely emergent. What I needed, and didn’t get, was a nebulizer.

I spend all day Thursday, dripping with sweat, trying to finish this project for school. I got so close, but I just couldn’t muster the strength to finish. I had the photos done, but the actual Power Point and photo log were a mess. I was shaky, feverish, nauseated, and my lungs were screaming for air. I told myself I wasn’t doing this anymore. I needed a nebulizer. I had a viral bronchitis that was working its way towards becoming pneumonia, and the only thing that was going to stop the freight train was a nebulizer. Plus the amount of oral steroids the doctors wanted me to take was asinine.

Friday morning I call my doctor and leave a message for his nurse. At this point I have to pause every 4-5 words to take a breath, because breathing has become that much harder. Granted I’d just woken up, so it was at its worst point, but I thin the message made an impact. The doctor called me back, and was shocked to hear how much worse my breathing was. While my service dog isn’t trained for respiratory illness, he was definitely unhappy with my breathing rate. He couldn’t figure out if I was having a panic attack or losing consciousness, but he was stuck to my side, and really not sleeping fully just in case.

All the pharmacies were out of nebulizers. Seriously. They either didn’t carry them, or were out. Winter illness woes. Luckily the community pharmacy was sweet, she called around and found a medical supply company who would sell me one for $40. Seriously? If I’d known they were that cheap, I’d have bought one ages ago! I rush to the supply store, mask on face, breathing terribly, and buy the machine. Then I manage to drop my rent off (five days late…oops), and get my steroids for the nebulizer. I return the steam machine I’d purchased for $50, effectively saving $10…but getting actual medical equipment. (Have a WTF moment, trust me I did.)

Get home, start to work on the project because now it’s like 5:15, and I need to turn it in. I wasn’t explicitly given another day to work on it, but I wasn’t told my time was up either. I accept that handing it yesterday instead of the day before may have cost me a letter grade, but whatever. I realize, hey, I can’t breathe, so I hook up the machine, and begin the breathing treatment.

Spoonie Moment: hooked up to your nebulizer, in pajamas soaked with essential oils, hair a mess, dark circles under your eyes, while typing furiously to finish a graduate school project, and simultaneously wondering if you should at least attempt to log in and get some work done because you’ve been MIA from your office tasks for days

Maybe I’ll get in trouble for having missed work, but you know what? I was honestly at a point where getting up to go to the bathroom was taxing. People have been calling out left and right at my job for stomach bugs and strep throat…even though I work from home, it’s possible for me to get so sick I can’t work. I also missed the start of a new class, which sucks, because that means I’m spending today and tomorrow attempting to play catch up.

Do I regret taking care of the guy, since I undoubtedly inhaled his germs, and my shitty lungs decided to cling to them? No.

Here’s the thing…

I could live life in a bubble, but I wouldn’t be living life. I take the precautions I can, with what I can. My roommate is amazing. She washes her hands the moment she gets into the apartment. I wouldn’t take care of him if he had a stomach bug, because I have a history of literally almost dying when I catch any type of GI illness. (I’m not exaggerating. For some reason I get ketoacidosis really fast, and things go downhill. I’m usually hospitalized for at least 5 days, and my kidneys and liver tend to nearly shut down.) I’m not saying if you’re my significant other I wouldn’t toss some fluids and soup your way, I’m just not hanging around the den of death to cook it for you.

I have realized I need to change a few things. For starters, the school needs to know that I have a chronic illness. My program is fast paced. One class at a time, each four weeks long, with the exception being longer classes for thesis type assignments. (Undergraduate was Capstone, graduate will be a Thesis.) I have one “F” on my undergraduate transcript that haunts me to this day, even though I graduated with a 3.34. I wanted to graduate with honors, and I didn’t. I was sick, I missed a ton of class, and when I changed programs, the unfinished coursework went to an “F” instead of an incomplete. Sometimes spoonies live in denial. We want to be as normal as possible, and we forget that it’s okay to have limitations.

Sometimes it’s hard to have an invisible illness, especially if you’ve been forced to act like you feel fine for a good portion of your life. I was raised in a family where, “You’re fine,” was uttered countless times, often when I really wasn’t fine. Plus we have so many relatives with autoimmune disorders, we tend to just pile it on ourselves and hold ourselves up to the standards of those around us, without stopping to assess our own abilities to function. I’ve watched my father nearly die because he pushed himself too hard, and I’ve had to realize that part of having an invisible illness, is recognizing when it’s time to make it visible.

The first night I spent over the guy’s place, I dumped my meds out on the table without thinking. I then had to explain that I’m not a drug addict, I have an autoimmune disorder. Being a science nerd, he asked which one, and I knew he wouldn’t know Behcet’s (rarely does anyone say they’ve heard of it) so I tell him I’ll tell him if he promises not to Google it. (The photos are terrifying.) Then I tell him if he does Google it anyhow, not to freak out, because I’m not as bad as the photos, and my symptoms are relatively in check.

Now they aren’t, and I think it’s time to do another dating with disease blog…so I’ll end this here and start another. Two for one day!

Bronchitis Anyone? Graduate School and Work Problems, Too