Future: A Spoonie’s :Lament

Writing

 

 

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For some reason I thought that this weeks Photo Challenge was the Daily Prompt, and without properly looking at it I went ahead and wrote…. so

I always feel like my future is uncertain…Only because I can’t plant too far in advance.

All of the things that I planned for my future when I was younger never happened, I always felt like I got really close; then everything fell apart and I was never really able to get back on track,

So naturally I began again, and devised a new plan for my future; setting sail with a positive outlook, because now I’m sure that this time I’m going to be successful, no one has that much bad luck.. HA! Future plans foiled again!!

Now I’m in this weird limbo, future unclear, wanting to plan but knowing what happens when I do.

I’m frustrated because I feel so behind when it comes to my peers, it’s hard to plan for a future when I can barely plan activities 2-3 days ahead of time; because I know that any second, any moment by body will decide that it can’t and it won’t get out of bed.

I’m frustrated because (Being A Spoonie Means) :

  • Canceling plans on short notice because I suddenly don’t feel well or my energy is completely depleted
  • Always having a constant level of pain and “dealing with it” (my transplant protocol dictates that I can only have 1 gram of Tylenol a day and no Ibuprofen at all)
  • Deciding whether to be in pain or drugged out on narcotics
  • People always thinking I’m faking
  • Feeling “trapped” in your own body and not being able to do anything about it
  • Realizing that one one will ever “get it”
  • People confusing my physical illness with depression
  • Dealing with people and their expertise. I swear if I hear about another herbal remedy, so fantastic new yoga move, or meditation technique I’m gonna lose it.
  • Feeling like “this is it”. It will never get better and there is a high possibility that it will get worst. This is what my future looks like. So I should probably get used to it.

And because of this my future is an hour from now, then an hour after that. At this point in my life that’s really all I can look forward to..

 

* The Photo used is actually a sticker created by SpoonieStickers on redbubble… great stuff, go check it out.

 

Until Next Time,

tyra2_thumb2

 

Copyright © 2016– Random Acts of Snark – Paying it Forward –  All Rights Reserved

Nerves

Writing

 

Two weeks is a long time to be “radio silent” but unfortunately I was in apparently I have (its getting much better) a pinched never and it was extremely painful. My back and neck where in immense pain and my arms and legs were numb 80% of the time. Sitting up and holding my head up felt like it was too much, so I spent the majority of the time in bed, and drugged out of my mind. When I was awake I knitted, and while I was knitting I was either super pissy or on the verge of tears. Two weeks is too long to be awake from my blog and even though I’m not 100% I’m back!  So let’s get started with this prompt for today!

Writing Prompt: Write a new post in response to today’s one-word prompt.(Nerve)

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So I guess this will be a continuation of what I was writing about before… something that I realized while dealing with this pinched nerve is that I have a higher pain tolerance than what people expect, guess that’s what happens when you are chronically ill person who experiences what I call a low buzz of pain on the  daily basis, it’s really got to be something for me to be considered “in pain”. Nerves are a funny thing, the real ones and the imaginary ones too, cause while the ones in my body where going haywire, my “imaginary nerves were going bonkers are well… cause everyone was getting on them..

My cat got on my last nerves, she wanted to lay on me, which I know she was probably trying to be comforting, but she only made me hurt more, and because I couldn’t ‘t get comfortable, even high as a kite on pain meds I would be up all night tossing and turning, while she’s laying in the middle of my bed, belly up to the sky, knocked out like it was the best sleep ever. My brother got on my nerves, because just when I would fall asleep, it would be the time that he would turn his anime up loud and it would wake me up…..

One thing I did learn the past two weeks, pain makes you humble. As I laid in my bed and thought about all the things I couldn’t do I realized that the my brother and my cat.. they annoyed the hell out of me, but they were there, My brother would run to my room when I was crying because I needed to get out of bed to pee, and my cat escorted me to the bathroom each and every time, waited for me, walked me back to my bed, then waited until I was settled to lay next to me.

So my take away for the past two weeks is NERVES, real or imaginary will get you every time.

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Until Next Time,

tyra2_thumb2

 

Copyright © 2016– Random Acts of Snark – Paying it Forward –  All Rights Reserved

Thanks, Hindsight

Writing

 

 

Writing Prompt:How is the year shaping up for you so far? Have your predictions come true, or did you have to face a curve ball or two?

 

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This time last year I was thrown a major curve ball. After what was supposed to be a minor (seriously it was a day surgery…. and it took 20 minutes, the prep took longer than the actual procedure) to remove a suture granuloma on the line of my transplant site, actually now that I mention it this was the second one that I had…. the first one went well, except for about a month later my stomach started to swell in one spot and it popped open and goicuoey puss came out….. which was what prompted me to have the damn surgery the first time. The doctor went it a second time, but got some of the lower sutures that were closer to the muscle…. and removed those hoping that the inflammation response would calm down.All went well as far as I could tell… I was in a little pain… nothing major, then a few days later I was in a lot of pain…. it hurt to stretch, my stomach was swollen, but I figured I wasn’t really taking the pain medication and it was part of the healing process….

Well you know what’s not part of the healing process… waking up in a pool of blood., there was a hole in my stomach small than the size of a pencil eraser….that was literally gushing blood…. I’ll spear you the nasty details… but I will say that I was rushed to the closest hospital via ambulance.. bleed the 6 or so hours I was there; the doctors couldn’t stop the bleeding, then transferred my back to the hospital that I had the surgery (thank goodness that hospital was crappy and the monitor staff…. well not that discreet (seriously click on the link ) Spent time in ICU, Lost half of my blood volume, and spent a month or so on a heat monitor.

So I can safely say that the beginning of 2015 was beyond shitty…. and the rest of the year was pretty much the same. So (Iike I do every year) I told my self that the next year I would have no major health crises… SO FAR SO GOOD!

So when 2015 ended I took stock of my life and realized there are things that I can’t control, Having an autoimmune illness and all the stuff that comes with it is out of my control, at this point I can only control my response. It’s hard when things happen to your body and you can’t control it, so it’s sort of made me a control freak…. but in the end the added stress was not helping me, so I adopted a simple (yet tough matra) “Don’t Sweat The Small Stuff” I can’t stress about things I can’t do anything about.. .. and I’m happy to say (even though it’s an on-going process) I’ve been successful.

It occurred to me the other day that I’m happy. Now to many of you, that might seem weird that I would say that, but I’m was always content…. so being happy about my life as it is at this moment is strange for me, and that’s a major change from last year…

So far my prediction has been correct, but we are so early in the year, who knows what challenges I may face in the coming months, but I’m prepared and I’ll handle it like I always do…..

So now I will make a prediction for 2017. Not only will I be happier than I am this year, but I’m also gonna be a kick-ass aunt….. I’ll let you know this time next year if I’m successful

 

Until Next Time,

tyra signature

Copyright © 2016– Random Acts of Snark – Paying it Forward –  All Rights Reserved

Just Another Day

Writing

 

 

Writing Prompt: Our days our organized around numerous small actions we repeat over and over. What’s your favorite daily ritual?

 

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Everything in my life except for doctors appointments are based on how I feel that day. On a day like today, where I have very few spoons, I woke up exhausted, and I stayed in bed all day long. I did get up this morning to feed my cat, and shift her cat liter and take it to the trash…. that seemed like it took whatever reserve energy I had. And it’s frustrating because it was a relatively nice day out (for a Chicago winter day)  and I would have liked to have gone out and walked… but the idea of even walking the way I feel would more than likely end up with my calling my brother to help me home.

Now every night before I go to bed I have a “schedule of the things that I want to do… for example when I went to bed last night… I had my meals all planned, I was gonna go workout… come home, do some journaling, maybe catch up on some Dramas on Hulu… get ready for my procedure tomorrow.. I good solid plan, that would have kept me busy all day…. so far I’ve done…. the journaling…. I haven’t eaten  anything except for a ton of water (no appetite), I need to get myself together for my procedure tomorrow and hope that I’ll be able to function afterwards…

So the plan is to go to bed early tonight, I have a new plan…hopefully I’ll have enough spoons to get through.

  1. Feed The cat
  2. Clean the Liter Box
  3. Go to the Doctor/Procedure
  4. Lunch
  5. Regional Science Fair to Support my cousin
  6. Pick up Mom from work
  7. Family Dinner
  8. Write of Tomorrow’s Blog Post
  9. Sleep

Then of course there is the backup plan if things are really bad

  1. Feed The cat
  2. Clean the Liter Box
  3. Go to the Doctor/Procedure
  4. Go home and Sleep

I swear it seems like every single day is an adventure (one that I honestly don’t want to take) …. I wish I had a typical day … it would make my life so much easier. But everyday I decide to have a full day… and somedays I have them,I accomplish everything on my list, I go outside, get dressed, and am social with other people….I look forward to those days….

 

Until Next Time,

tyra signature

Copyright © 2016– Random Acts of Snark – Paying it Forward –  All Rights Reserved

Plead the Fifth

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Writing Prompt: What question do you hate to be asked? Why?

 

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The question that I hate the most is , “How are you feeling?” It’s been a long time since I’ve felt normal, and on a good day my only issue is a small amount of pain and fatigue and on the bad days…. well it’s bad. But every day someone will ask me , “How are you feeling/doing?” And most days I want to say, “Awful”, “I’m hurting”, “I don’t feel good”, “I just want to go home and stay in bed”but what I end up saying is , “I’m okay”…. and 90% of the time it’s not true. Why do I say it it? I don’t want to come off as if I’m complaining, I don’t want to come off as week, and I don’t want to burden others with my “issues” so to make other people (writing this makes me realized how screwed up that it) more comfortable I lie and say that I’m okay.

I think it’s an automatic thing now, I say it so much it because second nature and I say it without thinking. And I know what I’m saying is nothing new… most Spoonies do it …

Until Next Time…

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Copyright © 2015 – Random Acts of Snark