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)

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

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

Caregiver Fatigue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Caregiver Fatigue

Breaking Down

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Breaking Down

When Your Nerves Make You Nervous

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When Your Nerves Make You Nervous

Scared, Sick, Tired

Being home from the hospital initially felt amazing. I was buzzed off IV Prednisone, and glad to sleep in my own bed. Or at least try. I woke up Saturday feeling generally like crap. A friend came over later that day to hang out with me, and I went to do foot reflexology. It helped a bit, but soon I was bak to misery. Solid foods and I weren’t getting along.

On Sunday I managed, after another night of fitful sleep, to eat half of a small baked potato. I slept better, thanks to some crafty snuggling by the guy that apple heat to a sore hip, and the pressure I needed to stop the pain, but it was only for 3-4 hours. After that I was up every hour. It seems like I’ve been made of urine since starting this Prednisone, despite not drinking nearly enough to compensate for the loss.

On Monday I woke up with a skull crushing headache, convinced I was dying. I tried to call the Behcet’s Clinic in New York, but it was a round around game due to the fact they’re not accepting new patients. Apparently if my rheumatologist confines them to take me they will, and my rheumatologist is convinced they will, but for me it’s a difficult blow. I also found out that I have to handle the cost of the flight, boarding, everything. I’m hoping family in the area can lend their apartments, however sparse the space, but I’m admitted for testing and my insurance doesn’t cover it, that means raising more money.

I’ve started a Go Fund me, but I try and keep things private on here. I also know a lot of us are on here with similar struggles. In any event, if you’d like to message me and request the link I’d happily share it, I just don’t want this blog to have an actual face on it because it’s more about dealing with chronic illness, while trying to keep my privacy since it is public.

Monday was an up and down day. I spaced out the Prednisone so I could eat some bland gluten free pizza, but I only ate half of what I’d usually consume. Then I was up with abdominal pain, and now it’s Tuesday and I’m up with more abdominal pain. Chills, shakes, nausea, headache, check all the boxes, I’m in steroid induced hell. I did more foot reflexology yesterday, but it wasn’t as helpful. I was relaxed enough to eat, but the numbness, tingling, and weakness, have returned with a vengeance.

Today I see the eye doctor, and I’m not dreading it, I’m just annoyed the appointment is so early in the morning, and that I’m awake even earlier than I need to be. The second issue is that I need rheumatology, and I see them tomorrow, but I don’t know if I can go another day without IV fluids or treatment of some kind.

I feel the disease testing me know, all the issues I’ve had before, coming at once, an then this neurological plague. The fog is probably from the prednisone, but I keep wondering if it’s going to get worse, or better. I walk with a walker and wonder who would ever want to take me out? Will I ever go out to a club again? I see myself in the mirror, when my eye aren’t blurry, and I see someone who is too thin, and getting thinner, and I lament the stretch marks from the steroids and the weight loss with a sickening sigh. People say we all have scars, but when you’re still trying to win the battle it’s hard to wear theme.

My life, for the most part, is something I take as it comes. We don’t get to choose what happens to us, just how we handle it. I try not to be negative but sometimes it’s hard not to sink to a depressed place. For the first time in a long time, I’m truly scared. I can’t walk unassisted. I can’t use dangerous items like my stove. I have assistive devices scattered over the apartment, and people on call to stay with me when my roommate is gone because I shouldn’t be alone. I lean on “the guy” way too much, though he does offer, and I just don’t want to weigh him down with all the negativity I simply can’t control.

Being sick is one thing, being sick publicly is another. We all get tired of, “but you don’t look sick,” when we’re exhausted and turning down invites or leaving an event early, but having people notice your deterioration, can be even more jolting. I went from okay, to using a walker in 10 days. Most people didn’t see me wobbling before the hospital, and nobody in the complex saw me in the hospital. Showing up thinner, in a walker, definitely made an impact.

Now it’s just a battle of, “What it…” and though it’s a game I don’t want to play, the reality is that it’s a game I’m forced to consider from time to time.

Scared, Sick, Tired