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?

Making the Equation: A + B = D

A+B=D That’s a phrase I tell myself over and over again in my house. It is part of how I am figuring out and growing in relationships and life.

We all come with baggage. What that means when it comes down to it is that it’s hard to learn new patterns in life from those we develop based on our experiences throughout life. (erroneous example: If a guy hits me every time I say the word dog, I’m gonna learn to stop saying the damn word).

That’s really what we mean by baggage.

When you have an experience over and over again; be it the way of a parent relationship imploding, a year in college that threw your life off track, an abusive relationship in college, or a health condition that got torn down by previous significant others… baggage is referring to the patterns that these interactions built into us.

Due to time after time of the same behaviors. A+B always equals C right? That’s what you learn. Every time your Mom comes home she asks how your days was and makes you cookies, it’s a wonderful experience, let’s say? Then if you came home one day and she wasn’t there no note, nothing, would you be worried? It’s like that! You always know what the equation is in each situation you’ve experienced before. When you are in a negative situation while developing these patterns then you’re going to look at the equation and reach the conclusion; a given of something negative.

It seems to me that most of us develop defense mechanisms to deal with these negative equations. Usually the defense mechanisms aren’t positive attributes for communication, for various reasons. Not just communication, but developing relationships, romantic or not. When you leave the negative situations behind it’s hard to learn to adapt to a different equation.

In our situation, my husband and I both had various behaviors that shutdown a conversation when we weren’t willing or ready to deal with the topic. Perhaps I shouldn’t say had, we still have these defense mechanisms, but when we were able to see that these things were happening we were able to start working on it. We use a variety of techniques from key words to phrases, to rules about situations before they happen. We had to teach ourselves with each situation that A+B doesn’t have to = C the equation can have other out comes (it isn’t always negative) A+B can = D. But this isn’t something that just knowing means it’s solved. Humans are never that simple.

When A+B started to equal D more often I believed that the equation could change. Then my Husband flipped out on me. He went very manic and crossed lines I swore I wouldn’t allow to happen to me… He ingrained back on to my brain the equation A+B= C (at least with him it always will now) and I’m working all over again for the belief that this equation isn’t always a true statement. I don’t want to run off any other man I love because I don’t believe it’s possible For the answer to be D.

Sleeping Beauty Syndrome

Did I really just sleep 46hrs? That’s pretty extreme. I mean I rolled over, I got up to pee, I think people said hello to me… but I slept through everything.

I woke up at 3:00am with a million text and Twitter notifications and a rumbling stomach. I also now vaguely remember demanding Gatorade water at points. (I like to water it down, too sweet) I got to make myself soup that I know my Mom made and left in the fridge. As I wander into the hall way and turn on lights I notice that, shit’s changed!?!

Weirdest thing about sleeping this long? I went to sleep with the place a wreak. Don’t get me wrong it’s less of a wreak than it has been. I have been working on it, really I have! Also my amazing parents keep showing up and cleaning while I lie sick in bed. They tackled the kitchen the other day. It was sad on my part. This was stuff I know a typical adult my age can keep up with regularly. But it took the “cleaning fairies” showing up for my place to see the love I should be giving it. If only I knew how to conserve my spoons and spend them as soon as I get a few!

I have three different infections right now. Woot! That’s what I get for having fun for a weekend…

My Body is a Mess; That’s The Temple We Live With

I was talking to a friend who was recently diagnosed with Lupus about recognizing symptoms as they show up, telling them apart from other similar symptoms, and understanding if any of the symptoms are related.

One of the things she said to me, when we were talking about her symptoms, that reminded me of my first onslaught of a multiple symptom life was “… I can’t tell how cause my body is a mess.”

My brain hollered Hallelujah, you’ve crossed over to being a Lupie. Our bodies are our temples right? Well here is your temple and no matter how much we clean and dust OUR temple is a MESS!!

But this is the temple we live with; with Lupus. We may not be able to clean , but we can certainly organize our temples!

That’s where understanding how each symptom works in the network of your body’s systems becomes so important.

Homemade Wedding

My wedding ceremony took place in my neighborhood. When I say neighborhood, I don’t just mean my parent’s house. I mean the entire neighborhood! It was ACTUALLY the perfect day for it; The weather was amazing, the colors were amazing, It was ridiculously fun!

 

It was weird knowing my groom said he didn’t like anyone enough to want to invite them. I had to fight him to get him to have grooms men. He “didn’t like any of them as people” But I decided to see that as part of his depression talking and chose who I understand to be his friends. They at least believe he cares. So they care about him. They deserve to be there if not just for that reason, they care. Weird snags throughout the night before and day. All of them I can chock up to his strange mood fluctuations. But it was beautiful. If this is the extant of how he fluctuates, then I can do this forever:)

Like Saying Goodbye

It feels like I’m saying goodbye to most of my friends. I don’t mean this in an over-dramatic morbid fashion. Believe me, I decided I’m not dying this time around so any of the rest of it is irrelevant.

More in the sense that I’ve been through this before. The getting sick, getting isolated. They forget. My friends never mean to, they care about me as a person! Quite a lot depending on the individual relationship, but No matter what not being in someone’s daily life you end up drifting out of their minds too… Then when I’m healthy again I have to start all over with making a new group of friends.

Time For Chemo Infusion #2

Finally.

This week was hell. I barely slept, I have actually been getting panic attacks again as well! When I do sleep, it’s during the daytime, exactly when everyone else wants to see me, so I miss visiting with family and friends who are in town for the holidays.

There is one positive thing about this week! I got to meet my seester’s BF. He is the first person who, upon meeting me, seemed totally comfortable and ok with my health quirks and all that comes with it! He even got all the vaccines, etc. necessary to keep me safe,  JUST to be able to visit our family! So not only is he sweet, polite, and interesting (Not to mention I LOVE how he treats my sister), he also isn’t scared off or weirded out by all the complications and eccentricities that come with dealing with my Lupus. I am sorry I didn’t get to spend more time with him, but I don’t think this one is going anywhere ;) , so I’ll have plenty of chances that I can look forward to!

Aside from this familial break from the stress of my health-life, my week was pretty complicated! I was on the phone with doctors and doing research everyday!

I called daily to ask questions of various specialists that I see. A nurse would get back to me with a brush off or a hint of information. When I managed to get a hint I would ask more questions of the doctor, causing the nurse to say she’ll get back to me and I am left tied to my phone waiting for yet another phone call. When I did manage to get an actual answer to a question I was always very thankful, I imagine the doctors are all very busy, I am one of many patients they see, I can’t be the only person with emergent issues and questions?!

But this still doesn’t make me any less frustrated by the walls being put up and evasions to my inquiries about my own health situation. Questions as simple as; “when are you scheduling my next appointment?” couldn’t seem to be answered by any doctor. Mind you, I didn’t actually get to talk to a doctor. I spoke to nurses who would read off a letter or note the doctor had left for them to relay to me. Honestly these women are angels. They dealt with me getting more and more frustrated with not getting answers.

Asking the same questions over and over doesn’t help, doing it louder helps even less.

But these ladies were patient and sympathized (in general, I am having a problem with one office). The nurses even go so far as to reread the questions they write down and ask for clarifications they think the doctor might want, these things help me have more of a chance I will actually get an answer the next time the nurse calls! They are on my side. These nurses, receptionists as well, want to help.

But somewhere there is a disconnect. Between how busy a doctor’s office is or who I talk to on the phone v. who speaks to the doctor or whether the doctor is distracted or is in a rush. Either way I don’t get all, if any, answers per phone call. Often all I acquire are more questions. My anti-nausea medication prescription was called in incorrectly by three different doctors, yet it is in my file at each of their offices, so to is my explanation and information which has all been written down by each office’s nurse when we have spoken on the phone.

But there is the disconnect between patients and their doctors?

I even had my father making phone calls. For one thing, he wakes up A LOT earlier than I do ;) , but also having grown up with this disease, too often I see a difference between how a doctor reacts to one of my parents versus the “young patient” or even the “young patient and her significant other.” My parents both have rights (as I signed the papers) to access my medical records and speak to my doctors. Like I’ve said before, it’s important to have people around you to guard your back, especially when feeling as exhausted as I have lately.

I’m lucky to have such a large immediate circle of support. I am even more lucky to have growing support from many other outer circles that either have always been important to me, so this support means more than they can imagine, so too are the number of new people I am meeting through this experience. I am learning that all of their support is invaluable not just for the advice, but to know that I am not “alone” in my experiences no matter how unique each one of our situations may be.

By the end of Saturday night (that’s right, we called daily for a week), we finally got answers.

First: I’d like to point out how surprised I was which doctor I actually got the definitive information from. Honestly, I would have expected one of the doctors I had a more long-term relationship with one of the doctors that, having experienced more with, I already trust more.

The oncologist is who called with the information!

You’ll love this! Guess who the oncologist called back with the information about my test results and when my next infusion would be? **Granted we both left messages, cause I seem to be getting nowhere with this office** But she called my father back to tell him my test results and when my next appointment is!

Seriously! It’s not like I’ve been an adult for 10 years and all… nope. This brought me back to the juvenile clinic I used to attend. Whether she meant to or not the oncologist made me feel like I was the child being talked about/around in the doctor’s office. What she may not have realized yet, is that I’ve been making my own medical decisions since I was 10yrs old. My parents helped with research and discussed decisions with me, but they were MY DECISIONS in the end! So far, it is starting to feel like the oncologist thinks she can circumvent me by having my parents decide on my treatment plan for me instead of even discussing it with me. If this continues it will be a big indicator that this doctor REALLY isn’t gonna work for me! I am giving it a try tomorrow. Monday is my 2nd Infusion and I will be seeing the oncologist while I am there for the treatment, despite the fact that her office is in another part of town.

This could be very interesting. Due to the fact that I will have half my immediate family with me. Each one with their own questions, protective curiosity and supportiveness to lend to the situation. After the encounter with this doctor’s nurse on the phone at the beginning of the week (what led to all the week’s difficulties), I need a lot of second opinion perspective on the situation, not to mention distractions and fun, to keep my blood pressure down!

**Watch me get white coat syndrome knowing I have to dwwal with this doc anyway**

Did I mention I’m not looking forward to this?

That’s ok. I’m making it fun. I’ve picked out a festive outfit my socks, panties, and earrings are christmas-y!!! I am wearing my guardian angel pendent knowing that all my extended family Down South is thinking about me. I am also bringing a cute pair of purple fuzzy socks given to me in a care basket by our couple friends J&J! I remember getting chilly last time I had the infusion until I put on fuzzy socks so these will be perfect (Plus they’re so silky!).

My Seester, who works in public radio, is audio taping my experience for family understanding, remembering, and documenting the experience in general–but just for us, not for radio. That my Seester even has an interest in supporting and experiencing this with me, let alone seeing and understanding what I am going through now with my disease more advanced than what she saw when we were children, means more to me than she can imagine!

My mother will be there for the first doctor’s appointment in a very long time. Being a teacher she gets very few days off. When I was little all of my memories are hospital trips with my Momma. To have her there with me again brings back the calm felling I remember from doctors offices when I was little, that feeling that everything will be ok? This might be the only infusion she will be able to provide support for me in person. As she will most likely be teaching for all of my others. I have an ulterior motive for wanting her there on top of Momma comfort and nostalgia: my mother is amazing at reading people. I need to know what she thinks of all these new doctors that she will be meeting Monday morning. It will be interesting to see if she reads the various doctors and nurses the same way I have.

Both my Momma and Seester will be traveling the hour to go to my infusion with me and then back home again and then back out of town for last minute shopping and to pick up my brother at the airport. Now that’s support! That much driving on the 23rd of December won’t be fun. It’s wonderful to feel loved. I might not get to participate in all of our traditions for Christmas, but what Christmas is about is This family, support, love.

My wonderful BF has agreed to stay in town and take care of various maintenance fellows who are scheduled to visit our properties yearly. These would have been hard appointments to reschedule as they are busy companies. My BF staying also allows him to get a bit more rest instead of waking up at the butt-crack of dawn with the rest of us. That way when I come home after chemo he will be prepared to be on point and, if necessary, to take care of me. He has been working nights everyday since break started. I know he is exhausted, giving him those few extra hours of sleep is almost a Christmas present in itself from my parents to him ;) though he would never say it or ask for it, giving him a chance to relax is good for him. My dear BF is only comfortable not being there because he knows my family has done this forever with me, “they got this.”

I am still considering looking for a new oncologist, but until I find one that specializes more specifically in auto-immune diseases, I am going to have to figure out how to put aside my frustrations and assumptions and work with this doctor. But I’ll tell you what, tomorrow I plan to ask how much experience she has working with auto-immune diseases, express to her that the shaking all my specialists assumed was due to my system receiving a dosage of Decadron hasn’t gone away, as well as request that the doctor write a written script in front of me for the correct dosage of anti-nausea pills. This way I can check that it is correct this time…

yeah, I am sooo not sleeping tonight.

Doctors’ Office Marathon

Started this post Nov. 12; finished writing and posted it Dec. 12; yet the two weeks of doctors after doctors that I thought I would be posting about turned into a month. Ever wonder how many appoints can be fit into two weeks!? Well, I thought I was going to test that question, but in fact, I have to extend that timeline: How many doctors’ appointments can fit into a month? … sigh. It’s been pretty exhausting.

This week is the first week that I didn’t have at least one appointment in a day. As a matter of fact, I had two whole days where I didn’t have an appointment this week!! Hahaha! All I did was sleep!! I’m beginning to feel bored….

Is this what my life is turning in to? Being legitimately excited to have two days off from doctors? Oh well! I’ve done it before when I was in elementary school, then again around 11-12yrs old? I don’t remember exactly. But I had a lot of tests all of the time. Then again, of course, with the lung involvement in high school. But nowhere near the number of appointments I’ve been having lately.

Surprisingly, I have had fewer tests than in those earlier times. Until now, I have lived with the assumption that  more Doc apps = More Tests. Not the case this time! I suppose that is because we already know what the results are right now and it’s just about waiting to see something change. When it changes, whatever IT is, I’m sure there will be a whole battery of tests all over again. Either that or we have another except Izzy situation. ;)

But I still have to see every doctor, they still all have to stay updated, as well as draw my blood for whatever that specific specialist needs as the indicator test. Their particular red flag telling that doctor to start the battery of testing for whatever area of specialty that doctor is in. They rarely seem to look at the whole person, but I’ve gotten pretty lucky, I’ve found a number of specialists that are much better at looking at all of me than most. I can say most cause in my life BOY HAVE I SEEN A LOT OF SPECIALIST!! I’ll talk about that in future posts. Oh boy are there some funny doctors out there!

I need sleep, but I have a tendency to get wired the night before a doctor’s appointment. Having an appointment daily is making my sleep pattern even wackier than it would be normally. I have to see the oncologist tomorrow. So I may have had today off, but tonight I am spazzing again as usual.

That’s really all I can think to call it, I guess I just get antsy. My body knows it has to get all of these things done, on a specific timeline, remembering specific things to tell the doc… I get wound up and then I can’t unwind.

It feels like it’s been a month since I’ve had a chance to unwind. My anxiety meds and my dizzy meds have been upped in dosage. I know why I need more anxiety meds that’s for sure! I’m so anxious I’m pacing (when I have enough energy to pull it off)! Which is really hilarious for an audience, because my vertigo has hit big time, though, the thing is, I’m not certain it’s vertigo. I’m just falling over. I’m standing or walking then I lose my balance. It’s frustrating. I vaguely remember feeling like I was “just falling over” when my vertigo had first started. It might be that I just haven’t had the vertigo this badly for awhile. I have no idea, but I need to remember to mention the balance issues to the oncologist. Since I have no idea if it is a possible side-affect of the Cytoxan.

Here’s where I really start complaining (I know, I know, technically, I already was). This is really messing up my social life. I can understand if that sounds dumb, but I don’t ever seem to be awake when people would be free to visit. When I do manage to line up a friend for a visit, they end up having to cancel because we forgot one shot or they have a stuffy nose when they wake up that morning (we can’t risk me getting sick). The worst part is, when my friends come over wash hands put on a mask, I bounce off the walls chattering with excitement for 20 minutes, then we sit down to watch a TV show and I fall asleep. I wake up in time for my friend to help make sure I eat and take my meds, then it’s time for my friend to leave.

That feels a little more like my friend just volunteered to be my babysitter so my BF has time off than that I actually got to socialize. Kudos to my amazing friends for hangout with me while I sleep on the couch next to them, but I wish I could go get coffee with the girls or go out for drinks. I wish I had the energy to hangout with the guys and go on adventures!

But I barely have the energy for all the doctors I have to see every week. Who has time to have fun on top of that? I may not have a job, but it’s starting to feel like my full-time job is being a patient. I wish I got paid to do this instead of having to pay for the experience. it’s the Disney World ride that they never gave a grand opening, too many ups and downs, only the designers liked to ride it.

Let’s just say you wouldn’t ride this ride if you weren’t strapped in to begin with. You certainly wouldn’t sit-down and buckle the straps yourself.

This is NOT a sprint people! No matter how much I keep pushing situations and trying to turn this medical situation into a sprint. I’m having a hard time accepting that this time around, this treatment plan, is a marathon. I think seeing doctors nonstop is finally starting to pound this idea into my head though.

**Admittedly at first it was like a fun flashback to my childhood**

But now I’m over the nostalgia and I am tired and “I just wanna go out and play!” wwaaaaahhhhHHH!!!!!!

There is still a big part of me that thinks, “Push that poison through me. Let’s get these treatments done. Why are we waiting for the next one? I’m already a little better from the side-affects of the last infusion, so let’s do this!?!”

I know it’s not so much the fear that anything will get better or worse medically, but that these things will keep coming–in wave after wave it will keep coming. Not in the up/down patterns of my Lupus that I am very used to, but rather in a frantic pulling in and out of an undertow, I won’t be in control the way I’m used to. I can’t swim out of the riptide this time. I have to just let it pull me in and out until the treatment is finished. I have to run the marathon to the end.

Chemo Quarantine Fun

Social butterflies like myself don’t do so well being totally isolated for a long period of time. But when I will be on something that suppresses my immune system to the extreme extent that chemo does, all sorts of new fun roadblocks come up when trying to figure out how to get my socializing in without exposing myself to every germ in town!!

We’ve setup my space pretty brilliantly if I do say so myself :) I got a big box of disposable masks, this way when other people want to visit me, I don’t have to worry about them bringing in more germs than I’m being exposed to from my caregivers.

What Does It Mean To Be Understanding?

Joy, one of my sorority sisters, and I stay in touch even though she is on the other side of the country now. One of the things we have discussed frequently is the importance of understanding and tolerance. Today, when Joy and I spoke, she mentioned an interesting encounter she had with a coworker that got both of us thinking.

Joy:

Yesterday, one of my coworkers was talking about her life and career while living with Lupus; she didn’t elaborate much, but she mentioned how she has been able to customize her work space and schedule, and how accommodating Our Company has been. I thought of you and all the issues you have had with professors. It makes a world of difference when people make the time and effort to acknowledge and work with someone’s day-to-day struggles and concerns. It amazes me to know how many professors you have dealt with over the years who were unwilling to make an attempt at accommodating your health.

Me:

You’re amazing. Most people would have gotten a lot less out of that exchange with your coworker. You make brilliant connections and are so compassionate!

Joy:

Haha, thanks! Peoples’ lack of understanding of that simple concept just baffles me! But seriously Izzy, it doesn’t take a lot of “understanding” to understand that good managing/teaching/mentoring means recognizing and working with an individual’s unique capabilities and concerns. You can’t truly succeed in those roles if you aren’t doing everything in your power to make sure you are helping people set themselves up for success! If they had been willing to accommodate you, the positive effects you could bring to each of those close-minded professors’ classes would have been worth it.

It is sad, because there are so many levels to the idea of understanding (even without factoring in disease/disorder/disability). Factor in anything that is not “normal” (within their own little world) and too many people just don’t know how to deal with it. It’s sad.

Haha, I often times find myself with the competing thoughts of

“There is just no hope of teaching the human race to be open-minded and/nice”

and

“You can do it People of the World! I know you have it in you to get to that Ah-Ha moment!”

People are both infuriating and fascinating, haha.

Joy and I are both working in areas that will hopefully encourage more Ah-Ha moments in our society where it comes to accommodations/understanding/disabilities etc.