Self Advocacy and Research

There is a fine line between becoming a Google doctor, and self advocacy along with research. When it comes to having something like Behcet’s, the treatment options are really all borderline experimental. We can treat the symptoms, get into the more extreme treatments, and then when those don’t work, what happens? Well, you end up like me…tripling your immune suppressing drugs, going on a six week steroid taper, and sleeping more than a sloth in a coma.

When I was having severe neurological symptoms, there was discussion amongst myself and a well educated friend, about things like plasmapheresis and IVIG. The former seemed the most promising, with the latter seeming like an option should they find out my immune system was also somewhat deficient. Plasmapheresis was an interesting find for me, because it has been cited as putting many patients with many different autoimmune disorders, into remission, or at least into periods of remission. I know I’ll never be off of immune suppressing medications…but the idea that I could be free of steroid tapers, and symptoms, is kind of everything to me. I mean, I can’t imagine what it would be like to make plans, ahead of time, and not have to worry about fainting, seizing, and of course, how to eat properly so I don’t pass out but also don’t vomit.

So how do I take what I’ve learned online, and apply it to real life? I don’t know. I’m not that patient who suggests things to their doctors, but I also have come to realize that my doctor is open to my ideas at this point. We didn’t think chemotherapy would fail. To be honest, we’re not totally sure why it failed in such an extraordinary fashion, though my suspicion is that I got a nasty cold, right around the time I began to be exposed to some really nasty stuff in my apartment. My immune system was triggered, I had to lower and even stop the Cell Cept, and that is the perfect storm for relapse. Initially we thought it was minor…but now I’m thinking it was just the beginning of this larger relapse.

Dizzy. Nauseas. Exhausted. In pain.

That is how I spend my days. One weekend rallying to spend time with friends, even though we didn’t do anything insane, turned into me laying in the grass because my legs literally stopped working. The steroids have at least encouraged my appetite, though they haven’t done anything to really help me digest things appropriately. At least the GI bleeding has taken a hiatus.

I want to tell my doctors that we need to try more, that I’m not ready to give up and just accept my life is how it is. I also don’t want to suggest something, only to have them scoff, become annoyed, or worse, try it and have it fail. Where is the line? What is helpful versus ridiculous? I honestly don’t know, but the struggle is becoming insane. One vaccine has left my body struggling to function. My diet cannot sustain what I need to function properly, either. The pain, the exhaustion, it’s all just so overwhelming.

Advertisements
Self Advocacy and Research

When Chronic Illness Pauses Your Life

I found out yesterday that we lost a family member to suicide. My instinct was to get on a plane, fly back home, and be there for his wife and children. Then I had to take a moment to realize that it wouldn’t be possible for me to do that. Financially I can’t afford the airfare, because I haven’t been working…because I’ve been sick. On Thursday I received the Hepatitis A vaccine, and unfortunately I landed in the group of people who react badly to the vaccine. I’ve had a fever, extreme fatigue, and a host of other symptoms. On top of that I’m going through a very annoying steroid taper while increasing my Cell Cept. Then, of course, there is the simple fact that it isn’t safe for me to fly at this stage in my relapse.

When your health puts your life on pause, you learn to just accept it. Sure, you have moments where you’re frustrated, but in the scheme of things you just sort of have to deal with it. In this instance, I can’t make sense of how to make sense of it. There are members of my family that want to see me, and even need me, and I know there is no logical way for me to get to them. I live where I live because there are more medical facilities, and the weather is better for my health…but in these moments I definitely struggle.

It also put a lot of things into perspective regarding my own mental health. I’ve been embarrassed about my struggle with depression…but I still talk with friends about it because I know that I need to bounce it off of certain people. They’ve been instrumental in my seeking increases in depression medication, and pushing for anxiety medication. Still, it isn’t something in my family that is really openly discussed. I know family members who take medication, including myself, but it’s not something that we really are open with. I have friends who take medication as well, but there is still this stigma around it. There is also the idea that you take meds, and you’re better. That is completely not the case for a lot of us. I need to take seizure drugs, my seizure drugs aggravate my already existing depression and anxiety. In fact, they drove my manageable depression into severe depressive disorder.

The person who passed in my family, I didn’t even know he struggled with depression. His wife knew, but again, it wasn’t really openly discussed. For him to go off and end his life was not expected, certainly not the way nor the time that it ended up happening. His daughters are definitely shell shocked, as are the rest of us. Mostly we’re worried for them. To lose a parent to suicide is something I can’t even fathom. Losing a parent is hard enough, but knowing that your father simply couldn’t go on with life, is heartbreaking. I just keep hoping that they know there isn’t anything they could have done to keep him here, and that his ending his own life doesn’t mean he didn’t love them enough to stay. His pain was simply so overwhelming, that he couldn’t see the people who loved him through that painful darkness that enveloped him.

This post isn’t about me taking his death and making it about my health problems. I just think it’s an important topic because of course I would love to just hop a plane and be there with my family. We see how chronic illness impacts things like work and school, but how often do we confront how it impacts our family life? I’ve talked about how I don’t feel like I’ll ever be truly loved in a relationship because of my health issues, and that is still something I struggle with. Coming to grips with my limitations within my own family is even harder. It’s one thing when I am let down by my health, it’s another when I let down others. If I had my wheelchair, I would chance flying, despite the doctor’s warnings…but I don’t. With the other medical issues I’ve been juggling, I know it isn’t realistic to try and go…but it doesn’t make it easier.

Hug the ones you love. Open your arms to those with physical and mental struggles. Talk about mental health issues because they’re not something to be ashamed of.

When Chronic Illness Pauses Your Life

Relapse Struggle

I’ve begun this blog so many times, but the wording always seems wrong. Either I’m far too upbeat, or I’m far too pessimistic. This is my attempt to just be honest.

About a month ago I began struggling with increasing fatigue. The weather here has been more hot and humid than usual, so I told myself it was just my neurological issues acting up. I’d also had a rather nasty seizure due to a delay with filling one of my seizure medications, and my rather stupid decision to go for a long walk without drinking enough water. One of the issues I struggle with when my stomach acts up, is that I really don’t feel hungry or thirsty, until quite late in the day. The seizure led to a nasty infection in my hand, because I’d managed to give myself road rash from thrashing around on the really disgusting sidewalks downtown.

Now, at first I chalked up feeling like crap, to the antibiotics I had to take for that infection. Since I’m immune compromised, they’d done a massive IV infusion, then really major oral antibiotics afterwards. I think I was in denial, but I kept thinking about the cold I’d had, and telling myself, “You had a nasty summer cold, the weather has been hot and humid, you were on antibiotics,” etc. I basically just kept coming up with options other than a relapse. Then the bleeding started.

My GI bleeding isn’t exemplary in terms of amount, but it is exemplary in both persistence, and the obviousness of it being from my actual intestines and not my rectum. I did have rectal ulcers, and one oh-so-lovely genital ulcer, but none of that was bleeding. I could feel the stabbing pain in my colon, as well as various points in my intestines, and the color wasn’t bright enough to have been strictly caused by the rectal ulcers. Try as I might, there was no denying I was at the very least, having a GI flare up.

Things only went downhill from there. My appetite became so poor, along with my thirst, that I began purchasing Gatorade and Boost. Then the shaking began. I’d been dealing with morning shakiness for a while, but the amount of time I spent violently shaking became longer and longer. I would get up at 9 or 10 in the morning, and shake until 1 or 2 in the afternoon. My service dog in-training was a bit annoyed that I needed him wearing his harness at all times, because I couldn’t trust my footing in the house. Soon I was using my walker again. I fell into the dishwasher, pulling it loose from the wall, and even fell a few times while outside.

I was lucky enough to finally get my primary care doctor to inject me with steroids, but I haven’t tolerated the oral steroids, meaning I’ll likely go in next week for more injections.  I’ve begged my doctors to allow me to self-adminster IM injections at home, but they’re all insistent on going the oral route, or going into the office for the injections. My primary care doctor, and neurologist, have both decided that a lightweight wheelchair is a good decision. I won’t use it all the time, but on days when I’m feeling weak, it’ll lessen my fall risk. I also hope that it will enable me to return to work, as disability was denied again. Now they’re saying I have to weight 18-24 months for a court hearing, even though the state failed to process my neurological issues, which is one of the biggest reasons I can’t work reliably, along with the GI issues, of course.

It’s hard to know what to feel. I have this overwhelming urge to stay positive, but I’m pissed off. I had my last round of chemotherapy in April. I relapsed 4 months later, with my severe symptoms cropping up around 5 months after completion. I spent more time going through chemo, than I did in remission. While I’m beyond grateful that my neurological issues are stable, I’ve had to face that I will never be neurological “normal.” After breaking down in my neurologist’s office, he suggested that I was emotionally unstable. I wanted to smack him. Of course I’m emotionally unstable, my body continues to let me down, even when I do everything in my power to try and give it a fighting chance.

So that’s where I am as of right now. Financially struggling, emotionally struggling, but still determined to find a way to live my life. At least once my wheelchair comes, I can begin to make plans without worrying that I’ll be too weak to participate. I have a backup option for mobility. I’ll also (hopefully) stop falling like a drunkard while walking around downtown on hotter days. I still worry about things, like finding love, and settling into a family someday, but I just have to hope that it all works out. First and foremost I need to find a way to persevere, even if my body seems determined to drag me down.

Relapse Struggle

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

First Flare of 2017 (It’s Okay)

On the 19th of December I had my second round of Cytoxan, which wasn’t enjoyable, but I survived. By Christmas I had a nasty chest cold. The pain had actually gotten so severe, I had to be evaluated to make sure I didn’t have a blood clot. I was also worked up, and monitored for pneumonia, because of some fluid noted in an x-ray of my lungs. Yes, I was in the ER…twice…one time was on Christmas Eve. My primary care doctor treated me for a dislocated rib, courtesy of my cough, and for pleurisy.

On the 1st of January I was determined to have a flare free 2017, but couldn’t ignore the fact that I hadn’t really felt well since the 19th of December. Sure, I’d had chemotherapy, but had it worked too well…yet again? After steadily f feeling worse throughout the first few days of January, I finally caved in and emailed my doctor, worried that I’d either developed an infection, or that I’d begun to have a flare. She hadn’t put in for repeat blood work, and suggested that I head to the ER to make sure I didn’t have an active infection brewing. Begrudgingly I donned a mask, called a Lyft, and went to what I had hoped would be the last crowded ER near me.

If only hopes were guaranteed realities, how happy we all would be!

The ER wasn’t crowded, but I’d placed a bet on a smaller ER, with one doctor, and he was not into the idea of treating patients expeditiously. Worse? My condition and treatment protocol put me into reverse isolation procedures…only they had nowhere to isolate me. I sat and waited in a sort of out of the way section of hallway for several hours before they had to give up, and place me in a room with patients who had the flu, just to process me in and out with the doctor. Without even seeing the doctor, they’d ordered a host of lab tests, which I was fine with, and yet another chest x-ray, which I found annoying. I’ve had at least 6 chest x-rays in the last two months. It’s becoming a bit ridiculous.

Anyhow, the blood work was annoyingly good. While I’m happy I don’t have an infection, my white blood cell count isn’t as low as one would expect someone on Cytoxan to experience. This is kind of a toss up between aggravating and relieving. I’m happy that they didn’t over medicate me, because I don’t want to murder my ovaries, or bone marrow, but on the other side of things, I am definitely having a flare.

I got hit with a double whammy of sorts. First, the chemo wiped out enough of my immune system to make it possible for a normal rhinovirus to nearly give me pneumonia. Second, the dose of chemo wasn’t high enough to prevent the stress of my ex, and finances, from instigating a flare. The best part is that the rhinovirus likely triggered an immune response which, coupled with the stress, resulted in the flare.

My eyes are being aggravating. My joints are miserably swollen, red, and painful. My intestines feel like they’re shredding while simultaneously being filled with large pockets of air. Simply put: I’m a Behcet’s addled mess.

When I sent my rheumatologist an email stating that I was feeling horrible, she had responded with a few ideas regarding what could be causing it…and the option to suspend treatment with Cytoxan. Saying that I was shocked doesn’t even begin to cover things. I have only received two infusions, and was told a minimum of six would be required to even give me a chance at remission. I went into this treatment protocol with fight in my heart, and accepted the 6-12 treatment protocol plan with the understanding that any infections could slow down treatments. I also knew not to expect immediate results.

Yes, I’m annoyed I’m flaring, which following my ER visit is definitely what’s happening…but I don’t think it means the Cytoxan isn’t working. Knock on wood…but I haven’t had a seizure since starting the protocol. More importantly, the other symptoms were completely absent during the first round of chemo, minus a few minor symptoms cropping up close to the second round of chemo. Given the amount of stress that occurred a few days prior to the second round, I’m shocked I’m not having a more severe flare. Normally I’d have sores, and intense GI bleeding. I’m only dealing with minor bleeding, and have no sores whatsoever.

To stop treatment would, to me, be admitting defeat. I’d be accepting the idea of treating symptoms as they arise. I refuse to live my life that way. If I had to, if they genuinely couldn’t keep my symptoms managed, then sure, I’d find a way to go on living this way, but I don’t think I’m even remotely close to defeat at this point.

My next round is in 10 days, which reminds me that I need to inject myself with Lupron TODAY.

 

First Flare of 2017 (It’s Okay)

Depression Depression Anxiety

It’s like a really miserable game of “duck duck goose” in my head right now. I can’t figure out if the depression is making me anxious, or if the anxiety is making me depressed, but it’s probably a combination of both. The doctors told me during the first round that it was normal to have a dip in energy levels around nadir, because that was when my blood counts were at their lowest. Accepting that is what is happening, has been a lot harder though.

I don’t feel like myself. When my hair started falling out during the steroid taper, and I cut it shorter and shorter, I kept trying to find a new identity along with it. Coloring it fun colors, and denying that my life was changing as the diagnosis got more severe, and the treatment options more debilitating. When the first round of Cytoxan left me holding clumps of hair, I felt empowered for about a minute after having what hair remained, off. Then I felt lost. My wig doesn’t fit me well, and though I can go to the wig shop and have a new one made, and fitted, the process of getting myself there is difficult. (The shop is about half an hour from me, and I cannot drive.)

Friends have fallen from my life, and the people I expected to reconnect with upon returning to San Diego a year and a half ago, haven’t all been understanding regarding my limitations. Why would they be? Some get it, but some don’t, and almost nobody understands the emotional aspects of it all. I have no hair. My once clear skin is red and bumpy. My weight fluctuates 10 pounds constantly due to not eating, then eating whatever it is I happen to be hungry for.

My primary care doctor increased my depression medication upon my request, but I haven’t found a psych doctor that I like yet. The practice that takes my insurance and is within reasonable distance cost wise for commuting, has really odd opinions on medications. Mostly they push what the drug representatives drop samples off of. They are making a move away from controlled substances, despite the fact that I do well when I have Xanax or Klonopin to take as needed. I will get my medical marijuana card renewed so I can get new marijuana strains that work better for my specific needs, but even that wouldn’t help me much right now. I can use it to cure nausea and help me sleep, but it doesn’t do much for depression.

Nothing really can, because my reasons for being depressed are completely logical. I don’t look like myself. My divorce has become bitter and hostile, despite the fact that we initially were in total agreement regarding terms. Things with “the guy” are still comfortable, but as I become uncomfortable in my own skin, I risk everything around me, including our situation. Both of us tend to be anxious people, and when my own anxiety and depression mounts, I have to distance myself to spare him added stress. I know he’d do his best to cheer me up, but ultimately be brought down in the process.

Is it really depression, though, if someone is going through all of what I am going through? I’m positive that I’m chemically imbalanced, given what I take for my Behcet’s and PTSD, and my limited diet…but how does that differ from depression in someone who eats normally and has no other underlying medical conditions? Depression in the chronically ill, or terminally ill, isn’t a new issue. There is a reason that mental health questions are asked prior to each chemotherapy infusion, but that doesn’t change the internal struggle I have with myself when these moods come on. I’ve lived with PTSD for a little over 10 years, and the symptoms have decreased, only to increase with this recent loss of self identity.

For so much of my life my identity was defined by what I did for others, and who I was to others. Now that I’ve finally been forced to focus on myself, there is a shock value associated with it. Suddenly I’m thinking about where I want to be, and go, in life, and then I see where I am now, and it all becomes overwhelming. There are things we can do as people to get where we want to go, but there are so many things out of our hands. When your health becomes a roadblock to success, you feel vulnerable, and exposed. A huge part of me feels unloveable. A friend has suggested that I have been uncomfortably comfortable in the situation with the “guy” because I don’t think I deserve more.

But how could I look for more? Right now I’m barely capable of maintaining myself, let alone a relationship with another person. Financially, emotionally, physically, I’m struggling, and while there is a huge part of me that lusts after the comfort of having someone there for me in a more concrete manner, I have to recognize that I’m not in a place to return what I would take out of a partner, at least not without sacrificing some of my own health in the process.

It boils down to wants versus needs. I have to recognize that my body is a need state, I need to do what I need to do to knock Behcet’s down, so I can pick up the pieces and build the life I want. I just wish I knew how to kick the depression that bogs me down in the fight. This last few weeks has been absolutely miserable. The treatment is never fun, but this time around it was more painful because I went alone, on very little sleep, with a ton of stress mounted on my shoulders. Going alone made me realize that “the guy” could and would be there when and if I asked him, and if he were available, but that I had to lean on other friends, and myself. In that moment, I wasn’t strong enough, though. I went into that treatment on the brink of collapse, having shaved my head the night before, and dealing with stress from my ex.

I am depressed. I am anxious. I am chasing both of those conditions around and around, to the point where I must look somewhat manic to the few people who choose to still remain close to me. As I focus on my needs, and give into the sleep my body craves, I hate my body for it. I pretend pain that I feel doesn’t exist, and that I can do things I know I can’t do simply because a huge part of me wishes it were true. That I were capable of achieving whatever I set my mind to. I pretend that it is me walking my dog for an hour along the bay. I pretend that it’s me, dancing downtown, and living it up. I can only pretend for so long though, before I succumb to the sad reality of the four walls of my bedroom.

There are inspirational quotes around, and jokes, and funny photos and movies…but there is also reality. Sometimes it’s just too much to deny. Sometimes you just have to cry, and accept the raw pain of a chronic illness, and serious medical treatment.

Then there is chemo-brain, which I almost forgot to mention (ironically.) Some people have said that the chemo-brain scenario undoubtedly contributes to depression, because you’re in a fog, an you’re operating slower. It’s definitely a real phenomenon, and I’m grateful I’m only taking anthropology during chemotherapy (thus far anyhow) because the professor agreed to let me audit the course from home versus come in and do the labs. (I still need to sit in on the course in six months when it’s on campus, but that’ll be doable, hopefully.

If there was anything I clung to, it was that I was in graduate school, and I had a plan for myself. When that all went out the window, I lost my identity as a student. Now that I have one class, I’m thrilled, but I’m still freaking out. What if I don’t do well in this class? What if they can’t fix the filing grade I got from taking an incomplete and not finishing within six months? (I took the course during Rituxan, couldn’t finish, and then the first month of chemo fell RIGHT on the six month mark, so I obviously missed making it up.)

I’m the one who tells everyone where everything is, courtesy of PTSD hyper vigilance now I’m the one running late due to misplaced keys, or sim,ply running into a room to get something and forgetting what I came for. My identity has been stripped to the bare bones, and it truly is a struggle for me to figure out what I’m going to do at the end of the day to define myself i na positive way. Right now I just feel like that “sick” girl.

Depression Depression Anxiety