Tuesday, July 5, 2016

Reentry

I know I walk in and out of several worlds each day. - Joy Harjo

So this was not the post I was intending to write, but it's been lingering on my mind the last few days so I need to get it off my chest. (My trip to the DR will have to wait, for now). 

Last week I went in for my third round of infusions (6 month follow up) and next week I will do the fourth and hopefully final one. It was just as easy and smooth as the first two and the only side effects were drowsiness and hot flashes for a few hours afterwards. Easy peasy. 

But after my return from the transformative experience that was VONA(which these infusions made possible), I've had a lot on my mind and have been in and out of really high highs and really low lows. 

I know that just one year ago, my body would not have been able to handle the physical work that it took to make it through all the walking, the heat, the long days, the poor sleep, and the emotional exhaustion that was VONA. And while it makes me very happy and very proud of myself that I DID actually survive without any major incident (aside for sleeping for 16 hrs straight when I got home), knowing that the state of "remission" I'm currently in is and may only be VERY temporary keeps me grounded, and scared, and humble, and cautiously happy. 

You see, these infusions have granted me a temporary visa into the land of the well again, but much like our own troubled immigration system in the US, I know that this visa can be revoked at any time. If I make the wrong move, eat the wrong food, lower my dosages just a milligram too much, stress too often or hell just because my body decides to say "fuck you" and rebel again...I could be thrown across the border into the hell that is chronic illness and pain. 

This knowledge has made my "reentry" into the land of the well a bit hard to swallow lately. The longer I feel "normal" again, the more I worry about relapse. As more and more days pass where I am pain free, the scarier "real" life becomes. The more the questions haunt me:

If I feel normal, does this mean everyone expects more of me now? (Like the "old" Jasminne?)
What if I can't live up to the dreams and goals I've set for myself now that I have the strength to try and achieve them?
What if I succeed at this?
What if I fail?
Will this be the time in my life where I will look back and say: "Well at least 31 was a good year"?
What if I forget what it feels like to be sick?
Will I be strong enough to handle a relapse after so much time feeling well?
Why don't I hurt anymore? Is something ELSE wrong?

These questions and doubts nag at me day and night. One minute I am enjoying all the wonderful moments, people, and experiences that have entered my life in the last year, and the next it feels like I'm suffering from some form of PTSD. I get anxious. I cry at nothing. I stalk chronic illness and chronic pain twitter feeds to remind myself that I am only one missed pill away from being where they all still are again. (Seems torturous I know, but when all you've known for 8 years is pain and illness, you tend to find comfort there)

You see, everyone talks about "a cure"...talks about the glory of "remission"....just like prisoners talk about "being free"....but no one, not doctors, or nurses, or even pinche therapists talk about reentry. How does one transition back into the land of the well, back into normalcy? 

I don't know how to live a care free, spontaneous life anymore. I don't know how to make plans whole-heartedly and just jump right in. I live in a constant state of "maybe." I live in a constant state of anticipating and preparing for the worst. 

To better understand where I'm coming from, I'll put it in perspective. Lupe and I have been married 7 years. If all continues to go well, and I continue on the path to remission, this will be the first summer in 7 years where I will not have ended up in the ER or hospitalized. THAT was MY normal. 

I've been writing about my "new normal" for the last 6 years if not more. Trying to convince and accept myself that normal was just a setting on a dryer. Normal is subjective. And that I was ok with chronic pain and illness as my normal. 

And now (for the better), that normal is gone (for now). And I have to readjust again. I'm not complaining about my good health, please don't misunderstand me. I am incredibly grateful. But I'm also a realist and I also know that there is no handbook for this transition. That I worry day in and day out that I will do something to sabotage my good health because being in pain and being sick is all I have come to know. 

Dreaming again is hard. Dreaming again is scary. Acting on those dreams is absolutely petrifying and often debilitating. 

If my body hurt all over and was falling apart, I wouldn't be expected to try. Getting dressed every day and brushing my teeth would be good enough. Now that I can push myself to do more, I want to push myself more, but of course I worry that at any moment it will all be stripped away again. (Realism, not pessimism) 

I'm trying to focus only on the now, like all the good philosophers, yogis, and smart people say to do.I guess I've just had a lot of time to think lately and that is what has been weighing on my mind. 

Yesterday was the 4th of July and all I could think about was my state of imprisonment. I am shackled to a body that has been temporarily set free from pain, but am also fully aware that these diseases I carry within me are a life sentence I will inevitably have to keep facing. 

5 comments:

  1. Hey Jasminne, I get where you are coming from with this completely but so pleased for you that you are feeling better and able to be so creative. What are the infusions you are having?

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    1. The infusions are called Rituximab (Rituxan). They were hard to get approved but worth the fight!

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  2. Hi Jasminne
    well, it turns out that's what I've been trying to get the NHS to fund (I'm in the UK) but they won't let me have it unless I am in imminent danger of losing a vital function. I won't bore you with the details. In better news you have inspired me to try some poetry and I agree with all you have said on radical self love - love it!

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    1. so sorry you can't get the treatment you really need for a more "normal" life! :( my doctor fought long and hard with my insurance company for it so I am thankful to him for it. It's a pretty expensive drug so I guess I understand why they refuse, but try if you can! My kidneys were headed in the wrong direction pretty fast so I think that's why I was able to get approved, but I'm feeling so much better overall because of it. Best of luck to you and yes, please write! :) it's literally saved my sanity.

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    ReplyDelete