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.

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When Chronic Illness Pauses Your Life

GI Behcet’s, Neuro Symptoms, and Livedo Reticularis

So one of the hardest part about this relapse, has been adjusting back to a life where I really don’t eat effectively. I’ll be calling a gastroenterologist, and nutritionist, but I know the testing they’ll force me through will be miserable. I’ve lost count of the times I’ve been scoped, and we never learn anything new. Major gastritis, the occasional rectal ulcer, and overall miserable inflammation. I know I have other ulcers, but I’ve never been able to manage getting scoped during a severe flare. While I realize it would be theoretically valuable I’m not sure what the actual point is. We know I have Behcet’s. Hell, the mention of potential vascular digestive disease, was noted years before my diagnosis, but never mentioned to me. The doctor actually wrote, “possible GI Behcet’s,” with a question mark, in my chart, but never informed me, or my primary care physician.

A few years ago I’d adjusted to the fact I didn’t eat much. I was losing dangerous amounts of weight, of course, but it hadn’t really even phased me. I didn’t feel hunger, or thirst. Often I’d go until the evening before realizing I hadn’t eaten anything, and had only had maybe one drink. As dehydration became an ongoing concern, I made sure to drink…but it took force for me to do it. Eating never seemed like an actual priority, because I wasn’t hungry. There were times when I’d eat a granola bar, and feel sickly full for the rest of the day. I’ve eaten breakfast, and thrown it up at bedtime.

When I’m home alone, I don’t really think lately about how I’m not eating much. I force myself to put Boost on some cereal in the morning, and then drink G2, or Powerade Zero throughout the day. I opt for those, not because I want to avoid calories, but because they’re not as strong flavor wise as full on Gatorade or Powerade. Lab work has shown that my potassium and calcium are barely within the normal range, so I make sure to go for electrolyte drinks whenever I can. I’m already noshing on Tums like it’s my job, so I’m not totally sure why my calcium is low, but I can only do so much.

In public, my inability to eat is a whole different matter. It’s embarrassing. I met a friend for the first time this weekend, and it was so awkward to take her to brunch with a mutual friend, or order in food, and have to explain to her that I couldn’t stomach it. I ate half a piece of plain gluten free french toast, and felt like I was full of razor blades. I later forced myself to finish another full piece, and a half of another half, before having to call a quits. This was after the benefit of Zofran, and carafate. Following that it took several hours before I was comfortable enough to move around, and ultimately some medical marijuana to prevent the nausea from consuming me that evening.

After a weekend on the go, my body was protesting violently. I was drinking as much G2 and Powerade Zero as I could stomach, medicating appropriately, but crashing hard. On Sunday we were all going to the botanical gardens, and I figured if we parked close, and only did the gardens, I could push through it. There ended up being an event going on, and I couldn’t bring myself to refuse the idea of walking through the park. I knew on the way back from the fountain, as I insisted I needed some sort of beverage or preferably an  snow cone, that I wasn’t going to make it long. I’d accidentally left the G2 in the car, and even if I’d had it, my legs were just giving up the fight. Through the weekend I’d had neurological issues in terms of my heart rate and dizziness, but I’d managed with both medical marijuana, and some newly prescribed klonopin. (At night I use clonidine.) We all approached a shaved ice truck, but it was too late. I knew I was going down, and the only thing I could think of was to gracefully plop down in the shade under a tree, lay back, and try not to cry.

In the end my friend who was with me through chemotherapy, and everything else for that matter, came over, and noticed the tears in my eyes. The new friend was getting our drinks and shaved ice, and he assured me that it was okay. Nobody was judging me, and I would be back on my feet in no time. I just sat there, cursing my body for failing me. After a few minutes I was able to push myself into a sitting position, but I’d lost all feeling in my legs. They rewarded me occasionally with some muscle spasms, but remained totally numb. I was literally poking myself, and I couldn’t feel it. This was scary because while I’ve experienced the sensation of not knowing where my legs are, I’d never actually tried hitting or touching them to see if I could at least sense external stimuli. The answer apparently, in bad situations, is no.

Eventually I ate some ice, rolled a cold water bottle on my legs, and was able to walk to a bench with assistance. My new friend was sweet about the whole thing, and my other friend brought the car around. I was just embarrassed. I was also angry. I’d spent the prior week preparing for the trip with an ER trip, two doctor’s appointments, and IV steroids, as well as oral ones. (I’m going on a two week taper starting tomorrow). We knew I was flaring up, but I thought I had a handle on things, I just hadn’t known where the flare was headed.

One new sign of my Behcet’s has been the annoying development of something called lived reticularis. From what I understand they aren’t totally sure what causes it, but it’s found in patients with autoimmune conditions, and is thought to be an inflammation  and/or spasms of the blood vessels near the surface of the skin. Unfortunately for me, mottled skin in the abdomen is also a sign of some pretty serious, and even life threatening conditions. It’s also not as common in the abdomen, as it is in the lower limbs, which made the whole thing a huge concern for my doctor. It was such a concern, that when I emailed her on a Sunday about whether or not I should make an appointment for steroid injections for my other symptoms, and mentioned the “rash” with an included photo, she immediately responded and suggested I go to an ER for an exam, and IV steroids.

I wasn’t that concerned, but went into the ER anyhow. I’d been having GI pain, and figured maybe it would be a good idea to get the damn thing checked out. Plus, Sunday nights are usually slower in the ER, more so than Mondays, and my primary care doctor was on vacation. The ER was slow…but because of my medical history, and the look on the triage nurse’s face when she saw my abdomen, I was taken back quicker than usual. I also saw a doctor while I was still finishing putting on the gown. Blood work was taken, IV’s were started, and a CT was ordered. During the blood draw I kept clotting in the tubing. My IV actually blew, filling my hand with saline, and requiring a second IV. At this point they were very concerned about my vascular system. They informed me, up front, that there was a good chance I was throwing clots in smaller vessels, or even in larger ones, and they were doing the CT to check for abnormalities, the blood work was for the same reason, perhaps even more so given my severe allergy to CT dye.

After the IV steroids, I cried. The rush from the steroids, combined with finding myself in the ER, facing potential admission to the ICU, was just too much for my tired brain to process. When you spend six months enduring chemotherapy, only to face such a potentially severe complication of relapse, a part of you breaks. Luckily for me, a 4-year-old who was in a car accident with her parents, was put in the room next to me, and she was hysterically funny. This kid took an airbag like a champ, apparently had an abrasion on her forehead from it, and was laughing saying, “Balloon go boom in car, right on face!” Her parents were crying, and this kid falls off the damn hospital bed, lands on the hard floor (I heard her), and laughs going, “haha I fall!”

That kid pulled me out of a panic attack, allowed me to find a way to get the TV in the room turned on, and settle myself down.

In the end my tests were normal, but I was given the option to stay if I wanted to stay. They couldn’t guarantee that the vascular pattern was totally benign, but I also wasn’t ready to stay in the hospital. I went home, promising to follow up with both my rheumatologist, and PCM. I saw my PCM three days later, where I was informed that livedo reticularis, in my case (as well as in the case of many others), is merely cosmetic. Since being on low dose steroids, the appearance has lessened to some extent, though it hasn’t totally disappeared, and has had moments when it is definitely worse than others.

Additional issues have included an overwhelming increase in fatigue, as well as a significant increase in heat intolerance. I’ve spent an uncomfortable amount of time laying on my bathroom floor after baths, and really need to get a shower head that detaches so I can wash my hair easier. I gave up standing in the shower a long time ago, unless it was to rinse my hair, but even that has become a rather dangerous endeavor.

GI Behcet’s, Neuro Symptoms, and Livedo Reticularis

My Disappearance

I’ve been in this odd place where things are going better with the Behcet’s, but not better overall. To say it’s discouraging feels like an understatement. My neurological issues haven’t gotten much better, despite my Behcet’s being relatively in remission. For a while I had no symptoms, but due to repeated infections, I had to stop taking Cell Cept for a while. I’ve noted some ulcers on my legs, but nothing like the ones before chemotherapy. My stomach has not responded as well as I had hoped.

Weight gaining happened, but it’s not because I’m eating healthy. I cannot digest things that are difficult to digest normally. No meat, no dairy, and definitely no raw vegetables or fruits. Greasy foods also give me issues. Today I noted a decent amount of blood when I went to the bathroom, which is frustrating. My neurological symptoms have been brutal, and my belief is that it’s related to my stomach issues. I cannot digest well, leaving me either dumping food through very fast, or (more commonly) having food sit in my stomach for hours upon hours. My heart rate and blood pressure are still erratic. Seizures have been relatively well controlled with the addition of a new medication, but consciousness isn’t going great. Heat, stress, and fatigue, all cause me to see stars and black out.

The financial toll has been severe. I’m looking at trying to return to work because my disability was denied, but no place near me works with my health. I can’t lift, bend, walk, or stand, for any prolonged period of time. I also know that any job, even if it met my physical limitations, would be hard to keep because of my fluctuating health. One day I feel great, the next I have the shakes and can’t get out of bed. There isn’t a warning, either. I literally wake up some days, and my body just can’t function. I’m hoping neurology will officially diagnose me with POTS, the hyper adrenal form, and begin the process of getting me a wheel chair. I personally hate the idea of people seeing me in a wheel chair, but I also hate having to avoid things on my weaker days.

Behcet’s takes a toll on your body, as do the treatments for the condition. I don’t know that I’ll ever experience a true remission, because symptoms seem to linger even when the disease isn’t very active. My fatigue is brutal, and neurologically it would appear that I’m doomed to have issues regardless of the status of my Behcet’s. POTS is a secondary condition that a lot of people with autoimmune diseases experience, but diagnosis is difficult. I did a 24-hour urine years ago to test catecholamine production, and the results did show an elevated level of catecholamines, but at the time we were looking for adrenal tumors…I had none.

I’m frustrated. I know my body, and I know medicine, so it isn’t difficult for me to put together my symptoms and recognize how clearly hyper-POTS fits my set of symptoms…but I can’t do anything about it. The doctor has to diagnose me, and thus far all he’s stated is that I have autonomic neuropathy of some sort. When I see him in a few weeks, I plan on bringing up POTS specifically. I hate being the patient who tries to diagnose themselves, but then again, how else do I push for my needs?

My roommate is pushing for me to get my license back, but it isn’t that simple. Even if I could go six months without a reported loss of consciousness, I still wouldn’t be able to drive in a lot of circumstances. My ability to focus, sit up, and not black out or get dizzy, is very limited. Additionally the stress of going back to work, would mean that I wouldn’t be able to drive safely anyhow. He means well, but he just doesn’t get it. Not having a license sucks, but it’s also a reasonable safety measure that I understand. I may get warnings before seizures, but that doesn’t mean I am safe. Even if I can pull over and relax, it can take hours before I’m okay enough to drive.

Life just feels like it’s slipping away. I want so much to get into a normal routine, work, dogs, food, friends…but it feels like a pipe dream. I just don’t know anymore. I don’t know how to be myself in this damaged body.

My Disappearance

Then There Was Cancer (Maybe)

In December I had an abnormal PAP smear. I didn’t stress. There had been talk of HPV a six months prior, and while my doctor at the time of the HPV drama had been a bit of a pain, he had stated that the type I appeared to have was very low risk. It didn’t cause cancer, and it wasn’t something most people even had symptoms of. I had an impaired immune system, so I had symptoms, but eventually I’d clear the infection, and be totally fine. At least that’s what he said. I opted to see an OBGYN before starting Lupron during chemotherapy, and that’s when I’d had the abnormal PAP.

Initially I worried. They wanted me to come in for a colposcopy, but I couldn’t drive, and was seriously ill from the chemo. My new doctor assured me that I could wait for the colposcopy. It took a long time for cells to change, and the external lesion that I’d noted didn’t even appear to be HPV. She told me it was likely a skin tag, or a result of my Behcet’s. I went through my chemotherapy without really thinking much about the abnormal PAP smear. What where the actual chances that I’d have all of these things going wrong at once?

On Friday I went in and had my colposcopy. I was nervous about the pain, but otherwise okay. What were the chances? They had a screen where you could watch the procedure, and so I watched…until I realized that something was wrong. Very wrong.

I stared at the screen. I wasn’t exactly sure what a cervix should look like, but I knew that there was something seriously wrong with mine. The edge was bleeding, which the doctor said wasn’t totally uncommon, but the rest of it looked foreign to me. A large white mass covered the majority of the surface, breaking the line of skin cells that mapped out the edges of the cervical surface. The doctor informed me that they’d need to do a biopsy. She turned off the screen saying that it wasn’t fun to watch yourself be cut.

A medical student held my hand, and the biopsy was quickly taken. It didn’t hurt as badly as I thought it would, but my head was swimming. The doctor told me to be prepared for the call, that the changes were moderate to severe, and more towards severe. We talked about HPV and cervical changes, and I asked if I had any options. She said that did, but that we needed to talk once the biopsy results were in.

I haven’t gotten them yet, but I’ve talked to friends who were in similar situations. Cervical cancer is this odd taboo subject. There are odd staging levels. Even if you’re in the very early stages, it’s still cancer, but it’s approached as though it isn’t. They’ll just shave off some of your cervix, or cut out some of your cervix. My friend has miscarried, once in her second trimester, due to issues with her cervix from the procedures she had to undergo. Other women have the “cancer in situ” treated via these removals, but still end up having to go through hysterectomies, because it returns.

I’ve fought through six months of chemo. I’ve accepted limitations based on odd occurrences with my autonomic nervous system. I’ve told myself that I will still find love and start a family someday, even though I’m embroiled in a long and bitter divorce. I push and push, and then the unimaginable comes form left field. Nobody was sure if I had HPV or not. They were all fairly sure I didn’t, or if I did, that it wasn’t a strain that caused cancer. Now? Well, barring a miracle that shows it’s some odd lesion related to Behcet’s, I’m facing cervical cancer. Now I have to grasp at the hope that it’s early in the cancer game, and limited to an area that can be treated without impacting my fertility.

Of course the doctor told me point blank that I am, and always will be, a high risk case. I have to see a high risk OBGYN before becoming pregnant, plan carefully, and be followed closely. People think my depression or anger over my divorce is somehow related to jealousy, jealousy that he’s living with his girlfriend, and that they have a baby. I am jealous, but not just of him. It’s this overwhelming jealous anger at the universe, because people around me have solid careers, homes, families, etc. They’ve happily fallen into the life I’ve always imagined, while I struggle to just hang on to the bits and pieces of what I’ve managed to assemble for myself.

I want to be loved, and be in love. I want to have a family. I want to have a career that enjoy. I know that life isn’t that simple, and that nothing is as perfect as it seems, but when you’ve fought as hard as I’ve fought, just to have life kick you when you’re just starting to get up…it’s hard. I feel like the wind has been knocked out of me. I’m waiting for the call, and dreading it, all at the same time. Bills have mounted, and yet I can’t even try to find some work from home work, because if I even work just a little bit, on record, my disability could be denied. I have backpay that I’m owed, that I need, because my credit card debt is brutal.

There has to be something more than this. There has to be something better. I’m so sick of finding out that the light at the end of the tunnel is really just an oncoming train.

Then There Was Cancer (Maybe)

Hello Remission!

On Monday, April 17th, I had my sixth and final round of Cytoxan. It almost didn’t happen.

When I went in, they did the standard laboratory work, and I was a little worried that my counts would be off. I’d been feeling rundown prior to the infusion, which wasn’t usually the case. Sure enough, the nurses returned and informed me that my potassium levels were low. This was a big concern for me because during one round of chemo, I’d had low potassium and calcium levels, which led to a massive seizure, and a night in the hospital. It should be noted that I despise bananas. My doctor cleared me for the infusion, but ordered two potassium pills to be taken prior to the infusion. She was coming in anyhow that day to discuss plans for future treatment.

So, potassium down the hatch, and then I did something idiotic…I ate during my infusion.

I don’t get nauseas during the infusion, or after, because of the glorious medications I receive. I do, however, develop an aversion to whatever I’m eating during the infusion (or drinking). This has caused me disgust at peppermint after the first round, and a lingering desire to only eat sweets after eating chips during that first round, too. Long story short…I’ve developed a sweet tooth. I stupidly ate Sour Patch Kids, which I have grown to love despite previously hating them…and my “friend” had recently purchased Swedish Fish scented vape juice just a day before. I thought it smelled wonderful.

Now? Nope.

This past week I felt like death rolled over and wrapped in horse manure. I’m staying with my “friend,” and I don’t really remember much from the first few days. I knew my potassium was still low because of the muscle twitching and pain, but I was too queasy to give a shit. I stuffed my face with potatoes even though I really didn’t want them, and then gagged whenever my “friend” would use his vape. Even now, with the nausea nearly gone, the scent of that Swedish Fish vape oil, is just too much.

Remission? My doctor seems to think so, though I guess it’s important to note that I will always have Behcet’s. I have this urge to go out, find a job, do everything a healthy person would do, but I just can’t. I’ve even pushed myself too fast already, with walks, and the dog park, and payed via sheer exhaustion, and dizzy spells. I will be taking Cell Cept, which is still a pretty strong immune suppressing drug. I’d thought remission would mean no more drugs, but apparently that isn’t quite how this thing works. I think a part of knew there would be maintenance medications, but you always want to hope that you can be “normal,” whatever that is…

My neurological issues are a whole different situation. I still have and seizures, issues with heat, muscle weakness, and tremors. My heart rate and blood pressure make no sense what so ever…which is why my neurologist is confident about his diagnosis of autonomic neuropathy. It was a blow to be told I had a form of dysautonomia, especially since diagnosis of autonomic neuropathy is based a lot on symptoms, instead of laboratory analysis.

When you’ve spent your entire adult life, and much of your childhood, searching for answers, you expect the answers to have some tangible legitimacy to them.

Of course, my heart rate fluctuations alone have given doctors pause for quite some time. In the hospital they thought the machinery was malfunctioning, because my heart rate would drop into the mid-thirties while I was asleep, and them soar to 160 when I sat up. Welcome to dysautonomia, can I take your order? 

The reality is that many Behcet’s patients suffer from some form of dysautonomia, though from what I’ve read there doesn’t appear to be a clear reason for why this happens. There aren’t a ton of us Behcet’s patients, which makes it hard to study comorbidity scenarios…but still.

Where does this leave me? I will likely have to take seizure control medications my entire life. This means I will also require antidepressants, since I have issues with depression because of the high dose anticonvulsants. If I can keep my Behcet’s in remission, I can hopefully wean off of the nausea medications, and have more of an ability to tolerate medications by mouth. I’ve already put on 40 pounds, and would love to drop some of that weight. It is hard to see my body change so drastically, but I’m grateful that I am capable of digestion again. That being said, I will also still deal with motility issues because of the dysautonomia, and because of my limited diet and hunger during my serious Behcet’s issues. I haven’t had any issues with my balance and coordination, though I do still have hyperactive reflexes. This, I’ve been told, is related to the autonomic neuropathy, which I’ll be investigating with my neurologist over the next several months. I’m also a new and proud supporter of medical marijuana. It has saved me more times than I can count in the last few months, and particularly during this last round of chemo. Without it, I’m not sure I’d have lasted the full six months.

My divorce still isn’t finalized, because my ex is controlling. It bothers me that we’re still legally married, and that I have my married name. It doesn’t bother me that he’s trying to keep control by dragging out the divorce. I am happy, and focused on my life, and he’s not able to hurt me any longer.

His words still echo in my mind though, that nobody will ever love a sick girl like me. What if that’s true? What if I’m destined to be alone like my father? Sure, he has friends, and I’m sure he dates, but he won’t open up to anyone, largely because of his illness. He’s told me that he’s better off alone, since he’s sick, and that could be a burden. I don’t think he realized I was listening when he said it to me, and he definitely didn’t know that I would one day develop my own serious health issues.

I’m in this odd place. I know what I want in terms of a career and a family, but I don’t know how to get there. How can I have children with my health the way it is? Who would want to have children with me? Will anyone love me enough to see past my health issues? What if my dream career isn’t fully possible with my health limitations?

You know you can adapt so much of the world to fit your abilities, but you also hesitate to ask for help with adaptation, because you want to be seen as equal to those around you. I want to be loved for who I am. I want to be seen as a human being first and foremost. I know that my disabilities are a part of who I am, but I don’t want that to be the first thing others notice about me.

There are times when I know I would need a wheelchair to do certain things I’d love to do. Take walking around Comic Con festivities. I know that the heat will break me down. I know that I would be spent by the time I walked from my apartment to the waterfront. If I had a wheelchair, I could take the stress out of the mix, assuming I had the strength to propel myself in the chair (or if I had a power chair). Still, who is going to look at me, in a wheelchair, and think, “That right there is girlfriend material!”

Sometimes I let myself wonder if my “friend” could be more, but then I take a step back, and evaluate the situation. He’s an amazing guy, with drive, and ambition. He’s attractive, kind, and comes from a good family. There is probably a reason I’ve been thoroughly friend-zoned, and it’s more than him not knowing what he wants. We all question where we’re going in life. but if we see someone who feels like they fit into the equation, we know. I don’t fit, and it’s taken me a while to accept that. So while this is fun, and a big part of me wants it to go somewhere, I’ve accepted the reality that it won’t. Guys like him don’t settle for girls like me, and no, that isn’t depression or anxiety talking. Like I said, I’ve made my peace with it.

I do want to be loved though. As much as love terrifies me, I want it. So I guess I’ll just keep fighting my illnesses, and celebrating the victories. As soon as I move into my new apartment, I’m having a post-chemo celebration. I want to have a major victory dance over the end of this chapter of my life. Eventually I’m going to head to Vegas to see one of my favorite DJ groups perform.

I’m going to live life.

Hello Remission!

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