Finding a Reason to Keep Going

I wrote this in 2013:

What is there to hold on to when it feels like there is nothing left?

So often this is a question I come upon with the path I have to walk. What am I supposed to do when it feels like I’ve tried everything, the doctors are at a loss, and my life just keeps becoming less.

When I say less I’m referring to the idea of quality of life (QOL) for people with chronic conditions. We still can have an amazing QOL, but rarely does it match up in style when compared to a healthy QOL.

Part of Lupus is a mind game. The sicker I get the more grey my world gets. The more grey my world gets the more trouble my body has fighting off the Lupus and the sicker I get. It’s a cycle. So at which point can I or someone who cares reach through the grey and drag me out? At what point does the depression level affect the state of the Lupus flare, rather than just being a natural reaction to the state I’m living in at the time.

It’s remarkable how going through this disease really is a cycle.  I ws saying so close to these exact words earlier to my BFG and the Singer. I don’t understand  why healthy eople just don’t quite see it the same way. Let’s see if I can find better words as well as way to combat these feelings while sick and cycling in a post to come soon!!!

Finding ways to stay positive in a seemingly downward spiral that feels impossible to stop: 2016 Post to come!!

My Britney Spears’ Moment

Remember when Britney Spears buzzed all her hair off and went totally nuts for a while? Well….

Yeah I know, I shaved my head at least 8 months ago at this point. But the shaving my head isn’t so much the imagery I’m trying to conjure, more the going totally nuts part. Maybe more specifically, an obscenely short lived marriage. Mine made it 7 months, how about you? Two weeks shy of dating for 4 years and a few months shy of being best friends for 8 years. I walked away from my marriage. 

I walked away from my future completely. It’s not like I don’t understand that I can get a new future. Believe me, with every diagnosis I have to reinvent parts of me to move forward in my life. But I never thought this would be a future I would walk away from. I had a husband who despite being dreadfully human; loved me and tried to take care of me, family that is ALWAYS there, professors who were possibly willing to work with my health conditions, an actual decision about what I want to do for a living (if I can hold a job that is), even knowing I am infertile I was comfortable with my next steps I was taking to make a family. I had every part of my life moving forward. Yet somehow I was still drowning and I hadn’t seen any shore yet. I’ve realized, that when it came down to it, I didn’t have any of those life thingies on lockdown. Starting with what was inside my own head all the way to what was going on with him in front of my eyes.

He needed help. Instead of helping himself, he placed me in the role of a parent practically, forcing me to carry him as he ever so quickly was spiraling into the Doldrums. Holding him up was like trying to keep the sand from falling between your fingers after a wave splashes over your hands. Not to mention my hands can only take so much before they cramp up;) –Spoonie joke!

He was so very scarily violent before medications. Only a few of our friends had seen him like this and never any of his family. The friends who had to sleep over in blankets outside my locked bedroom door to keep him from taking the door off it’s hinges to get to me while I was sleeping. Friends who would stay for days, because it wasn’t safe to leave me alone with him or him alone with himself for that matter. But once the medications started to work, he became somewhat functional. Someone who could even-out from his erratic emotions and behavior at times. He became a friend again. I still walked on eggshells, but I didn’t have to have protection outside the relationship anymore.

He prevented me from being able to be me, when the person you are with forever is supposed to strengthen the things that make you you. That was still a problem.

I’ve known I am polyamorous since I was in High school. I wasn’t sexually active until after High school, this gave me a number of years to understand what I felt about this. I knew part of what I was losing myself in with husband was denying the poly part of me. (I must point out that marriage does NOT affect the ability to be poly) Husband and I had always had an agreement that we would be poly, (I, already being so when he met me, and he was going to work on it for himself) but we needed to give each other some focus for awhile as per my policy with every new relationship. Awhile was supposed to be months and it turned into 3 and 1/2 years. Not kidding. With my health issues and husband learning to be my caregiver throughout the flareups and downs, his mental health issues coming to the surface, me having to go on Chemo, and our struggles with becoming adults in the outside world; there was never a good time to start moving our relationship into poly. But he did finally make a deadline after he proposed. I told him I had to be able to start moving into poly life again or I had to consider he wasn’t who I was supposed to be with. I thought that the marriage was a wonderful time for him to understand that he was my primary and another person would never be the reason he could lose me. He seemed to feel this would cement his “ownership” of me. I unfortunately didn’t realize this was how he saw it at the time. He set a date for a year after engagement to start opening the relationship and date other people. When that date rolled around he seemed like he had been hit by a semi truck. He even implied we hadn’t discussed it, ever!? Luckily I was able to get him to admit the bullshit behind that argument, originally anyway. Now that we are separated he is saying all sorts of things to previous mutual friends.

That’s the way break ups work though right? Especially as a girl with mostly male friends… They mostly sided with him. But that also tells me they are believing him when they’re told by husband that I would do particular not nice things, very nonfactual things interestingly enough. Stuff that if you know me you’d look at anybody suggesting them with a funny look. But apparently these friends didn’t actually know me, cause they sure seem to be believing his victim claiming nonsense. Yet they won’t believe me (other than the few who have seen him on the edge with his mental disorder) about his being mean or violent. Decidedly, could they have ever actually been my friends? It still hurts to feel this isolated when I was a victim of domestic violence, yet no one is willing to see him as an aggressor. To the point where they’d rather blame the victim as a liar.

I feel like I’m a stalled car in the center lane of a highway, trying to figure out which fork I take next, to actually get to any destination at this point.

I now definitively can say I don’t know what I’m doing anymore. I know what I was doing, with him in my life, was worse for me, but at least I had a map to follow then. Now I’m struggling to understand what I actually lost when my back was turned so that I never actually saw it. Like the Silence in DOCTOR WHO, I always forgot unless I was looking right at it.

The biggest factors:

Being infertile- I always planned to be a Mom. I want to adopt so badly, always have. But I want to see what carrying a life feels like. Having lost so much in my life, having had so much of my self die inside me, it’s become extremely important to me to feel my body make life not take anymore of mine away.

Being a Burden

Not getting school done— I legitimately only have two excuses for not getting my work done. My frequently difficult health issues and my husband’s inability to do anything “adult life related” to take care of himself. When I had to help with his homework, his class scheduling, his doctor’s appointments, his, his, his…. etc. When in the world was I supposed to have time to work on my own work? Especially when the only times I wasn’t busy taking care of his real world stuff was because I was laid up in bed not in any condition to do anything but request help for even the smallest things (ex. picking up my water glass beside me so I can drink, it would get that bad).

Becoming socially isolated— Yeah, I know. That’s something I said I wouldn’t let happen again. That’s how my abusive ex got me under his control, why would I ever let myself be vulnerable like that again? Because when it comes down to it, I have to trust to love; and I really wanted the chance to love this man. So when he didn’t like me going out without him, because “what if something happened they can’t take care of you right,” I willingly conceded to his judgement. But in the back of my head I didn’t realize at the time, I was only doing this to prevent any “punishment” I would “deserve” otherwise. I was perpetuating the Abuse cycle myself. I didn’t stand up for what I wanted out of fear of the consequences. When did I become someone who was afraid of the consequences? What level of emotional, mental, or physical pain did it take for me to finally fold? Because I sure don’t remember the exact incident.

Feeling worthless— I still can’t shake that feeling of worthlessness that has been creeping up my spine all of these years. It doesn’t help that he would remind me regularly in much more clever wording; that I am indeed worthless and dependent on him. Even though he couldn’t even pick up his medications on his own!? When he was feeling worthless he did everything he could think of (not usually consciously) to tear me down until I felt the same way, brothers in arms I suppose? Well I didn’t want to be held in drowning arms any longer.

Still being abused— On some level I knew I married an abusive guy. Under no fault of his own is he like this though. Before you judge him, you have to understand, it’s like Dr. Jekyll and Mr. Hyde. He didn’t mean to ever be cruel and rarely remembered much of the cruelty afterward. Such are the symptoms with his disease. But to find out he is doing “so much better” medically and the way he was treating me wasn’t doing better… started to be a wake up call for me. This cycle was too unhealthy to live in forever. If he was unwilling to make a solid daily effort toward bettering his mental health for his own benefit and mine I couldn’t stick around and wait to see if I’d get suicidal in turns along with him. But maybe that’s what he wanted? He has certainly implied that before. Would that have “justified it all” for him? Probably not, it would have just given him another way to self-hate. Which is the last thing I wanted since I really was looking for the confident nonvolatile man that I was friends with 8 years ago. I knew after the disease was triggered he would never be the same. Not being nice to me so that my days consist of walking on eggshells and not being safe wasn’t part of the bargain for me.

Being Poly— He wanted all the bells and whistles like you see with a new toy in a commercial. But he didn’t want to deal with actually having to assemble a new toy first. He didn’t seem to understand that there’s a lot more trust and work that goes into a multi-partner relationship than most mono relationships (not because they don’t also need it granted). He loved the lip-speak all about being poly and swinging, he didn’t love the reality. That would be why I resent this fact coming out so late in the game. He wanted to be poly or so he always told me. Until I got to be poly too, then what he wanted did a pretty big reversal. When it came down to it monogamy was so ingrained into husband’s head he didn’t know how to be or think any other way. Before I asked to be allowed to get rid of any OPP rules it was just an acknowledgeable permission to cheat on his part. He enjoyed these liberties immensely. But when I wanted to be allowed to play without him like he could without me the ingrained belief that it’s still cheating reared it’s ugly head. He didn’t know how to think outside the guilt-driven patterns of his belief in monogamy and took it out on me. That’s ok, there’s nothing wrong with being mono, but I wish he’d figured it out a little earlier along in the relationship. I wouldn’t have poured all of me into him then. I wouldn’t have given him every weakness I have as a weapon. I wouldn’t have done a lot of things actually, there are even more things though, I would have done.

That’s what really kills me. Realizing that I stepped back into the abuse cycle when I started dating him, even though I’d been climbing the ladder out of the “abused women’s well” rather steadily at that point. Somehow he triggered me right back into it. To the point where I passed up opportunities that ranged from mildly entertaining to most likely life changing. I wouldn’t be who I am today without having been through what I went through with Husband. But who would I be?

Prolonging My School Hiatus

As it gets closer to August 25th my hopes for starting back to school this semester are dwindling. Even though I’m no longer on Cytoxan/chemotherapy, I still can’t seem to get my health back up to par for classes. I have no reason to go back to school if I don’t have the energy to make it through classes yet another semester. I’m not gonna lie, this is a blow to my self-worth. I know, I know, logically I have the same self-worth as before. But it just feels like one more thing that got stepped on by Lupus and I’ll just have to walk away and start new somewhere else. Currently I am maintaining my denial and am certain I will finish school… eventually. In the mean time I am still trying to hold on to the last wisps of the structure for my life I mistakenly thought would go as planned (way back Freshman year!), I have thought of a few things school-wise to turn my focus on.

I have a number of Incompletes that I need to finish for my major, bot to mention graduation. Instead of pushing myself, I will be focusing on two Incompletes for the entire semester. I don’t need to overload myself. On top of the Incompletes, I’ll be Petitioning the school to get my credits to Roll-over. The thing is… by the time I will be able to finish my degree, with the requirements for credits as well as the requirements for my health, I’ll have been “In school” for more than 10yrs!! Ouch! That was another blow to my esteem… it’s taking me more than ten years to get my Bachelor’s Degree:/ But I have certainly enjoyed the topics I’ve perused while attending classes on and off;) I certainly know what I want to do as a career, if I have the opportunity to work outside the home. With the way my Lupus is going, that isn’t looking to be likely! But I will always look for ways to try to get out there!

Are We Really PLANNING For a Baby!?!

I’m trying to wrap my brain around what my husband and I will be doing over the next few months. The plan will lead to our lives changing for… well forever.

 

I haven’t had a chance to really process the idea that I may not actually be able to have children if I wait, like I initially planned. I mean I planned to have my college degree first, hell even a dog!! But the baby is coming first if I want that option. Unless I’m willing to risk not having it…

 

From the persecutive I have of all the options in my hand right now, the only spade I have to play right now is baby first college after. But boy is that a scary persecutive. Especially since society claims the “proper order” is very specific, of which I won’t be following remotely in this situation. I think what scares me most is knowing this is something I am ready (as you can be) for, but I don’t know if my life with this guy is ready for a baby on top of the complications of his mental disorder and incorporating it into taking care of my health and a baby.

The Dosage That Finally Made My Guts Heave

I can’t hold anything down this time around. It was the last infusion. What’s weird is the dose was lower than they have been typically. But for some reason it really hit me this time. I’ve decided that it is a combination of things. First I have become to complacent with taking the preventative meds for nausea dizziness, etc. Second, I suspect I over did myself he weekend before my treatment:/ I can’t help it, I want to have fun when I can. In general it keeps my spirits up, but when the backlash is this bad, it doesn’t make the fun worth it. I was just starting to get some meat on my bones! I really need/want to gain weight!! This isn’t gonna happen if I keep having weird bouts of renting food. I prefer to store permanently the food that I spend the energy to ingest, thanks.

My Brain’s a Goldfish In a Bowl

The goldfish swims around the bowl in circles. There’s an iHome on the desk the goldfish passes with every sweep. Wooh! iHome! *Goldfish is shocked* Swims around again passing the iHome; Wooh! iHome! *Goldfish is totally shocked by this new item in it’s view.

No matter what, by the time the goldfish gets around the bowl, it’s already forgotten about the iHome. This is my brain on Chemo.

Visiting the In-Laws

Here’s a post that I started more than a month ago, but could only finish now.

12/27/13

So we found out Boxing day that everyone on BF’s mom’s side of the family is getting sick and getting sick fast. This was where we had planned to stay, but with my suppresed immune system that isn’t close to an option. So how do we still make it to Grandma’s 90th if we have nowhere to stay that night?

We had to work fast. His father’s house was an option, but a slim one. For one thing we didn’t know if anyone was sick there because we hadn’t needed to ask. This side of the family has a number of toddlers, which frequently means sniffles and coughs… at the very least. For another thing, they are already housing a number of family members for The Birthday. There was no telling if they had any rooms left that we could stay in! He is the youngest of 6 siblings… there wasn’t likely to be a room that wasn’t being used. Here’s hoping.

**Fingers crossed**

We also started looking up hotels that were half way between his mother’s place and his father & step-mother’s place–keeping in mind, of course, that we have a very slim budget. I mentally bookmarked quite a few hotels as options the night before we headed out the door.

Speaking with his father about the option of staying the night at their place, we got lucky. His father agreed that we needed to make sure the family members showing up weren’t sick first, but there was a bed on hold for us.  My poor Dear had to do all of the driving, not that he doesn’t usually do most of the driving, but it was difficult for me to realize that there was no option for him if he got tired of driving. However, there are some pluses to not having had a license until I was 26 years old: I learned to be a good navigator and copilot.  If you need someone to open up your water bottle, check the map for our next exit, change to a radio channel that isn’t playing Nickelback or unwrap your sandwich, I’m your woman! But put me behind the wheel and my ADHD is so busy concentrating on not getting distracted by anything on the road that a lot of the leisureliness of a road trip gets deleted.

When we got to BF’s parent’s house we put on our protective masks and headed for the door. We stood inside the glass porch to speak with his dad. Sure enough, a number of family members had sniffles and coughs.  His father was very worried about us staying in the germy environment and getting sick. We explained that we had looked up hotels before leaving, finding a number of reasonably priced hotels that we could stay in for a few days. Specifically, we had quite liked the idea of the Microtel in the area. I had stayed in Microtels growing up on family vacations when I was little and we were traveling on the road. They tend to be rather nice hotels the room itself is just smaller. but the things in it aren’t.  This helps make the hotel room cheaper than other hotels typically are. His father agreed to pay for a hotel room for two nights, this way we could stay for the duration of the family visit that we’d intended. This meant we had half of the time to spend with his father’s side and the other half to spend with his mother’s side, just as we had intended. Both BF and I were extremely touched by this show of concern and interest in my/our well-being.

Knowing how difficult it can be to accommodate me to begin with, everyone on both sides of the family really went out of their way to make sure I had the opportunity to feel included. They managed to make me feel like I was actually one of their children being accommodated rather than someone outside the family that they had to “deal with.” If I hadn’t already been sure at this point, that they were going to be amazing in-laws, this vacation certainly cemented the idea in my head.

Xmas Eve: My Dad’s B-Day

We celebrate my Dad’s birthday on the 24th even though he was actually born on the 25th. This way it gives him a day for him and Christmas can be that as well. Though we always wish Daddy a Happy Birthday when we wake up Xmas day! He gets his special meal and presents etc. on Christmas eve.

I really enjoy the traditions my family has created for itself for these few days we all get to spend together. Despite what many other families are like, I really enjoy spending time with my family. We pretty much spend the whole time having fun and laughing.

Thing is this time I’m sick. Not like what we are ALL used to sick (they did grow up with me), but a sick that is more, a sick that interferes in a way we haven’t quite figured out how to adapt to yet. That’s not fair. Everyone is adapting, but part of adapting is catering to my needs on a level that makes me feel like I take away a lot of fun and time that we would typically all be spending together.

Talking to the Therapist About Health

I saw my therapist today. I missed y last two appointments. I didn’t realize how stressful that is for me at this point.

It’s amazing how people have a stigma about seeing a therapist. When their entire job is to listen to you and help you with your problems…

Question: Do some people not have problems?

Oh. I guess that’s a pretty rhetorical question isn’t it?

We all have problems, all different problems, but everyone has them. Who couldn’t benefit from a little help once a week with these problems? Sure we might be able to be just fine working it out on our own. But, why do that, when you don’t have to? Often the therapist can find a way that is much healthier than an individual would come up with on their own.

 

My therapist say it is normal for me to feel that this chemo and severity of the situation isn’t real yet. She was impressed with my ability to have arrived at that point on my own in such a short time.

Postponing Chemo Treatment #2

Yesterday was infuriating. I was so shocked, frustrated, confused, stunned? I don’t know which emotion of those I was feeling, I was practically numb with too many. All of the above emotions, I suppose?

We were driving to the infusion appointment that is more than an hour away from where I live, when I got a phone call from the Oncologist’s Office saying:

(conversation is abridged for pertinent info, leaving out most of the nastiness, random  extra questions, run arounds, and being put on hold)

Nurse: You’re numbers weren’t good and you can’t do the chemo infusion.

Ummm… excuse me?

**As my Dad pulls onto the exit ramp and makes a turn**

Me: My numbers are what? What numbers? What do you mean I can’t do it today? We are almost to the  clinic!

The nurse explained that when they drew my blood at the last appointment my numbers were dangerously low. That I should have known this. Since the doctor called me and left a message!

Oh…

**I look down at my phone to see if I have a missed call, but the  ”missed call” indicator showed none missed.**

Me: I’m sorry I didn’t get a chance to listen to that message can you please explain to me what’s going on?

Nurse: When we drew your blood. two of the three were low. Your platelet count even more dangerously so…

Me: (interrupting, oops) Platelet count, that’s what keeps me from bleeding out from a cut right? But then do I have a high clotting factor still?!

Nurse: You can’t get the infusion.

**I look up to see us pulling into the parking lot**

Me: I’m already there. I don’t understand what the problem is? I’m clotting just fine. The few bruises I got haven’t grown at all, less than usual actually…?

Nurse: That doesn’t matter. What matters is what your blood work shows. You can’t get the infusion today. You can’t get the treatment again, until we draw you’re blood, that means the infusion will be the 23rd.

Ok, hold on. First, I’d like to say that it is never appropriate to make a decision about health treatments based solely on blood-work numbers! Second, seriously, the 23rd? The day after that is Christmas eve! It’s the day we celebrate my Dad’s Birthday!? (He’s born on Xmas.) I don’t want to spend Christmas eve feeling like shit. Then, if it’s like last time in anyway, I’ll feel even worse on Christmas! What kind of asshole move is this?! I guess it doesn’t help that I don’t trust this doctor that I’ve seen only twice and seems to treat me like I am just another cancer patient rather than recognizing my scenario and bodily responses are different because I’m lupus patient and one shouldn’t consider any patient’s case to be just another anything! So why is that how I have felt both times I met this doc? Thank you very much.

Mind you, as I’m listening to the nurse’s explanations, I’m totally exhausted, have barely woken up yet, really. I’m pretty sure the adrenaline rush from what the nurse was telling me was all that I had jolting me in rather intense spurts to full livelihood. Need I say this is not a very nice way to be woken up? I think the term would be waking up on the wrong side of the bed. It didn’t matter that I kept trying to roll back to my side by being pleasant and enquiring (though more and more forcefully),this nurse was determined to take my happy resolve away. She and the oncologist were pushing me hard, apparently intent with the goal of getting me to fall off the wrong side of the bed.

And boy was it morning! Well for me it was morning. For others, in general, it was just before school starting or just after work starts. For me this was an unseen hour of the day! Don’t get me wrong I love it; am thoroughly fascinated by interactions and life that happens this time of day! I just don’t get the chance to experience it. Because I can rarely function well enough to move, let alone be in a good-morning-mood, that time of day. I mean If I wake-up in the morning before my stomach does, I puke.

I’m sad to say I let myself get frustrated. I was snapping my questions, pleading a little too. Why couldn’t we do this? Aren’t the results of my blood work going to go down with the treatment anyway? Isn’t that the point?

Nurse: Yes the numbers will go down with the infusions, but we have to wait for now because they are too low

Uhhhh Too low… I’m so confused, isn’t the point that they wanted these numbers to hit rock bottom? Isn’t the point to “reboot [my] immune-system by knocking it out completely?” Am I the only one confused here?

Me: Are my numbers borderline or am I am really that low? Cause I’m not having any symptoms to indicate this issue and my body usually reacts to bruising and cuts pretty negatively

Nurse: Well they may have been borderline so I’ll go check.

I thanked her and waited a few minutes. Thinking as fast I could what all of these things meant. Were they taking into account my typically abnormal tests results versus physical presentation of symptoms? Were they looking at my numbers with the lupus-effected factors included? Thinking, thinking, I had to understand, so I knew what questions to ask depending on the answers she comes back with.

Nurse: You can go to the center and have your blood drawn again. She says we can wait and see what the results are today

I thanked her and hung up the phone. I explained to my dad and BF what the situation was and we all went in. The nurses in this clinic are wonderful and greet me nicely. They just got off the phone with the oncologist, so they already know what’s up. They explain that they are giving me fluids while we wait for blood test results. After they have me all set up, checked in, with my IV placed, then they finally draw my blood.

What turns out to be an hour later, they come back with the results it’s gone down more not a lot but my numbers have gone down. They call the doc to see what she decides. It takes four tries and a text before the oncologist calls back. The nurses come back in to my hexagon shaped space that I’ve been assigned and express that the oncologist has said, “Absolutely, no.”

Well, there we go. I call the oncologist. I get her nurse again, great.

Me: Explain to me what’s going on please? Why can’t I do the treatment today?

Nurse: You have a low count and it’s dropped lower. That means it has a potential to drop even lower. Whch means we don’t know what your bottoming out point is. So we have to wait.

Me: What happens if it stays the same versus if it goes up?

Nurse: If it goes up, then great; if it doesn’t, then we know you’ve bottomed and we do the next treatment.

Me: After the next treatment will my numbers go down and bottom out?

Nurse: Yes, your next treatment will drop your numbers lower.

Me: So if my numbers are the same as they are today, at the end of this week,  then you will do the treatment anyway? No matter what my numbers are expected to bottom out either by the end of this week or after the next treatment? Then why can’t you do the infusion today?

**I get admiring fearful looks from the nurses and technicians around me** It appears it’s new to everyone to see a doctor actually question about their medical choices they’ve made about someone else’s body. Not to mention my competence with my medical issues based on my age baffles every medical practitioner I encounter. I think watching a child stand up to a doctor’s decision was baffling in a way that made them more consciously recognize that I’m not blindingly letting someone else control my body. All I wanted was answers. I have the right to understand the medical choices being made about my body. Doctors don’t always know best. Repeat after me: “Thank you for your medical advice. I will take it into consideration while making my decision.” That is what a doctor is for. This doctor didn’t seem to understand this.

Nurse:You aren’t listening to me. None of that matters. You aren’t getting the infusion today. I refuse to talk about this anymore.

Excuse me? You refuse?

Me: Thank you. **As I hang up the phone**

Well in my defense of hanging up on her, she did say she refused to talk about this anymore more. I really had nothing nice left to say to her on that topic or any other for that matter.

I looked up at the crowd in the room, many half gapping at me. I admitted embarrassedly that I hung up on the nurse. That what she was saying was inappropriate, not to mention that I have the right to ask as many questions and get clarification where I need. I ask the clinic if it is possible to choose treatment against medical advise, out of curiosity. Turns out you can’t, because the doctor has to send a prescription in for every treatment. Ah, in the end I never really have the power, do I? They finished the paper work, took out the IV, and prepped me to leave.

So, everything about the next 6mths just got moved back more. Instead of being able to even have a Christmas or visit siblings and in-laws I’ll be sick at home. Classes will probably have to move back another semester, if not two, at the rate they are giving me each infusion. As I wipe a few tears away I head to the elevators in the process dialing the number for my rheumatologist. Maybe she’ll explain things. I ended up having to leave a message. I’m exhausted, furious, and defeated.

I guess all I can do is wait until my orders get handed down from high. I told me parents and the nurses in the clinic, if I can’t do it this week I’m tired of being pushed around and put off and flibbertgibitted with and that I won’t do it anymore. I can wait and do this treatment in a more extreme situation. The social worker tried to tell me not to make my decision while being this upset. I look at her like she is crazy. Being upset doesn’t change the situation. When I am calm the situation will be the same. I haven’t arrived at the conclusion based off of anger, why would I change my mind?

Me: I don’t change my mind lightly when I’ve made a decision.

We leave. I slept the rest of the day–missing my rheumy calling me back–too exhausted to fight this anymore that day.