twogreys

[twogreys]

God this sucks!! This time of waiting. Waiting for it all to start.

Be careful what you wish for, they say. Tomorrow he gets the port put in and liver biopsies taken. Chemo starts next Tuesday. We are starting with the FOLFOX, the same chemo as last time. Then I don’t know what happens when the start the targeted chemo/immunotherapy. We still don’t know when radiation will begin, he has the tattoos already.

I can’t feel. I have tried and I’m just numb. I’m scared. And I’m scared of what will happen when I have to feel this. I am already so tired and worn out. I need help. I need a friend!! I want a friend! I just feel so alone and fear I’m about to be even more alone.

But for now it’s time to wind down, tomorrow is a big day…

#cancer #care giver #cancer survivor #esophageal cancer #chemotherapy #liver biopsy #metastatic cancer #fuck cancer #need a friend

[twogreys]

Coming home from a weekend away. Should be happy and exciting; but we are apprehensive at best. It WAS a nice time away…but we can’t quit thinking about it.

My husband has cancer, again. 

This time has nothing to do with the colon cancer from 11 years ago that HE BEAT!! No. This is esophageal cancer with mets on his liver. Stage 4. Basically fatal, 2-5 years at best.

I think I just feel numb and like I’m watching someone else’s life since we found out, and more so since the appointment that confirmed everything.

The following days and weeks will go fast as everything is set up and started to keep this beast at bay. Sigh-we got this (sure we do)!

#cancer #esophageal cancer #stage 4 cancer #care giver #cancer survivor #cancer survival #chemotherapy #radiation #not giving up

[twogreys]

I’m super excited. Don’t want to say why just yet. But I really want this to work out. I think it should. If it doesn’t it may end my marriage. It’s big. I’m scared. All I want is support. We shall see.

#fura #support me #marriage

[twogreys]

I am so done. I just can’t anymore. I deserve to be treated better. I deserve to have my feelings taken into account. My wants and needs matter.

[twogreys]

[twogreys]

Living with chronic illness is waking up every day and rolling the dice. The question is never “Will I be in pain today?” It is “How much pain will I be in?”

“Wil I be able to be productive?”

“Will I push myself too hard”

“Will today be a good day or a bad day?”

(Good doesn’t mean pain free. It means manageable)

“Can I leave the house?”

“Will I have an emergency?”

“Will I get stuck vomiting in a public restroom or port-a-potty?”

“Will someone harrass me for using a mobility aide?”

“How many ignorant comments and intrusive questions will I hear?”

“Will I pass out today?”

“Is it all gonna hit me at once and will have a random mental break down in the middle of the grocery store?”

“Will I be able to do the things I planned?”

“Will I have to cancel plans again?”

“Will I be guilt triped for canceling said plans?”

“Will someone touch me or my mobility device without my permission?”

“Will someone "help” me in some way and then hold it over me/use it against me later on?“

"Will the pain randomly hit me all at once?”

“What if a flare starts in the middle of doing something important?”

“Will people be understanding if I can’t do something?”

“Will I accidentally hurt myself today?”

“Will the things I do today leave me bed ridden tomorrow?”

These are just a few of the questions we have to face in the morning. Every day is different. Chronic illness and disability fluctuate. What I can do one day, I can’t another. What I can do one day can leave me in a lot of pain and exhaustion for multiple days to come. And some days it won’t. But it will always at least hurt a little. And thats difficult to explain to people. People question the validity of your illness on your good days and on your bad days its “but you could do the thing yesterday, so why can’t you today?” I don’t know. Honestly, I have no idea. And that is the problem. I don’t know what the day holds. I don’t know what symptoms will be worse each day. I don’t know how exhausted or in pain I will be, but even if I wake up feeling alright- they could all come and hit me at any time and any place. And idk how the actions of today will affect my tomorrow. Its all a balancing act, but even though I TRY to plan, it is all too unpredictable. Then there are the decisions we have to make every day, the questions remain the same- but the severity of the results can differ and is unpredictable.

Every meal hurts. I could get naseaus or even violently ill if I eat, but if I don’t eat it also hurts and I could get dizzy and faint. So what do I do? Roll the dice.

Staying at home can either be a good thing or a bad thing. I may need rest and leaving the house could make me have an incident. But it can also be a bad thing, because I may need to get out that day. I may need sunlight and to socialize and to move around. If I stay home, it could make it worse and I could get really depressed. But leaving could make it worse too. And I don’t know which one I should be doing today? So what do I do? Roll the dice.

Showering can ease my muscle and joint pain and I use it as a coping mechanism for depression, but it also can give me a different kind of pain and extreme exhaustion, which may end in me sleeping the rest of the day and waking up more exhausted. What kind of pain do I want today? Roll the dice.

Will taking a nap make me feel better or worse today? Roll the dice.

And on and on it goes. Every single day. And yet, we live our lives. We do what we need to do. We take care of ourselves and if we are able to, we follow our passions to the best of our abilities. I am happy, for the most part, with myself and my life. But that does not mean that I do not struggle. Because I do. Every second of the day. And I am proud of all of you who have to play this game every day too. The odds are pitted against us. The board was designed for healthy and abled people and still we keep playing. And I am proud of us. And we deserve better from the people around us. Every day we fight and every night we win. But in the morning, the game starts again. New rules, new scenarios, new pain.

And so for the people in my life that do not face this level of uncertainty, I need you to understand that I do. That I don’t cancel plans because I don’t want to see you. That I’m not faking it when I suddenly have an episode or symptom flare even though I was fine two minutes ago. That even if I’m able to do things I wasn’t before, that doesn’t mean I’m getting better. Its different every day and I could very well be bed ridden tomorrow. And its not me “giving up” to admit that. Because it is my reality and I do a damn good job of adapting and working around it. My mobility aide is not a prison and you don’t have to be sorry I use it. It makes it so I can do a lot of the things that I’ve always wanted to. It keeps me safe. I don’t choose not to eat something because I’m picky, it could make me very sick. I may have to sit down at any time, even if we are in the middle of a grocery store, so that I don’t pass out. My joints may randomly pop out of place. I could get randomly ill. etc. etc. etc. And I appreciate you sticking around. Because now there is uncertainty for you too. But having a team mate makes the game a bit less overwhelming. But only if the teammate tries to understand. I have had plenty of “teammates” who ended up pushing me towards failure. Plenty of “team mates” who failed to have patience and understanding. Who failed to show me the basic human decency that I deserved. And that continues to make the game harder, because now self doubt is another enemy I have to face. So if I have chosen you to be a part of my life, you don’t have to, especially if it is going to negatively effect both of us. But if I have chosen you, it means I trust you. No one knows the future. No one knows what the day holds. But for someone with a chronic illness, that uncertainty is much bigger, scarier, and more complex. And so I need you on my team if you decide to stick around. I need you to understand the reality of what happens to all of us everyday. Every step is taken carefully. Every action carefully planned in an attempt to bring balance. In an attempt to keep us safe. It is important to have that balance, because if we aren’t prepared we WILL get hurt. Every day there is a chance, but if we aren’t careful, that chance turns into an absolute. And so we step carefully. But even with careful planning, everything is uncertain.

And so every day, we wake up, and we roll the dice.

[twogreys]

Feeling somewhat decent, so I’m going to attempt to do housework. My house is a wreck and it’s overwhelming. I wish I could afford some help. Alas it’s just me to do it. Of course I will over do and be in bed tomorrow. ::Le sigh::

[twogreys]

My two kitten babies. They keep me going when I’d otherwise just give up.

#spooniepets #edswarrior #spoonie #kitties #one eyed kitten

[twogreys]

Friendly reminder, you are allowed to break. You are allowed to ask for help. We were not created to rely solely on ourselves. Don’t get me wrong, you can save yourself, and you can be your own hero, but it’s also perfectly ok to drop your guard, crumble, and have someone pick up the pieces and put them back together. You don’t have to fight alone. It’s ok to let someone fight for you, along side of you. You don’t have to be strong all the time. Let someone pick up your pieces. It doesn’t make you weak. Stronger together. 

[twogreys]

cool disability psa!

hi everyone!  so while the term “handicapped” is really outdated/problematic & we don’t use it to discuss pwd anymore, i still hear good, woke people use it to refer to parking spots/toilets/etc.  like “the handicapped stall” or whatever.  and i really think they do that bc they don’t know of a better term.  so i’m gonna give you one!  “accessible!!!!”

any time you’d say “handicapped,” say “accessible”

“oh, he has fibromyalgia, so he has an accessible parking permit” “due to her spinal cord injury, she has an accessible dorm room” etc etc

this is cool for two main reasons! 1 - you’re not using super outdated language  and 2 - it puts the focus on the accessibility of the environment, not the personal impairment, which if you’ve done any reading on the social model of disability, you’ll know is a really good thing.

so spread the word, practice better disability politics, and spare me the inward cringe every time i have to hear the word “handicapped”

#edssucks #rawarrior #fura

[twogreys]

This seems like my cats’ lives

[twogreys]

something other people don’t realize about chronic illness: Just because I stopped talking about a symptom doesn’t mean it went away, it just means that I realized you were sick of hearing about it

[twogreys]

My two baby kitties, Harrison & Emma

#spoonie pets #orange kitties #kittycat #one eyed kitten

[twogreys]

Cognitive Testing

Going for cognitive testing this morning. I don’t even really know what to expect so my anxiety is pretty high. They said it will take about 4 hours….that’s a long time. So not looking forward to this.

#EDS #cognitive #cognitivetesting #FURA #whysolong

[twogreys]

I need this in my self talk. I'm so hard on myself all the time. :-/

[twogreys]

Yep...

That spoonie feel when you have ONE good energy day and you’re able to be productive without feeling wiped out and you go to bed feeling good about yourself thinking “wow if I could have a couple more days like that I could get all my important shit done!”

And then you wake up the next morning back to feeling like the tip of a dung heap and you’re body’s like “haha. Bitch, you thought.”

[twogreys]

I was thinking just this earlier today. About how I do need a break - from life. But that's essentially death and not looked well upon but those who love you. But really, I'm so tired of being....everything. Just,so,tired....

The problem with chronic illness is that no matter how badly you need or want a break, there is no way for you to get one. You can’t take a vacation and leave it behind like a stressful job or annoying family. You carry it with you and have to accommodate it every day for the rest of your life. And it’s so debilitating and exhausting knowing that you will never, ever get a break from it.