The 5 Stages of Grief

Finding out you have a disease that isn’t curable is a bitter pill to swallow. The steps to get back to the place you were before it struck you, can feel so far away; it’s a hopeless feeling. I was scared, and turned to to the resource I know best… the internet. I started watching videos, reading blogs, articles, everything to calm my mind from the whirlwind of emotions I was going through. I stumbled across a video that talked about dealing with your initial diagnosis. She talked about how people often handle it by going through the 5 stages of grief.

  1. DENIAL. The feeling that this can’t possibly be happening.
  2. ANGER. The frustration that overwhelms you. Why is this happening to ME?
  3. BARGAINING. The yearn to regain the control you feel like you’ve lost. If I did something differently, would I be healthy right now?
  4. DEPRESSION. A feeling known all too well by people who deal with chronic illnesses such as Psoriatic Arthritis.
  5. ACCEPTANCE. The hardest stage of them all. The willingness to accept what is happening, to turn your new leaf, and find the way to live your life accompanied with what you have been dealt with.

If you asked me, I’m not sure which stage I’m at. If it’s possible, I suppose I’ve been hit by every single one in some form or another since I started dealing with this. Although I’ve already had to make changes in my life because of this, I know the one thing I want to hold onto throughout this journey is positivity. There will be days that are harder than others (today was a harder one) but I want to hold on to the hope that I can, and will reach a time where there are a whole lot more good days, than bad ones.

When referring to psoriasis and psoriatic arthritis there are some terms that describe the ups and downs of how it presents itself. A FLARE is a period of time that refers to a lot of extreme pain. It’s an agitated state of the disease where it feels the worst and most painful… these are the bad days. REMISSION is a period of time that refers to the best kind of days, the good ones! It is when the PsA (psoriatic arthritis) or psoriasis calms down and can even go away completely for a while.

This is the name of my blog: Road to Remissions. If you want to join me on the good AND bad days, I’m going to write about my road to those remissions. I want to live my best life, with the most good days as I can get. I’ll be writing about my treatments, exercise, diet and overall life changes that I make to compensate with this new diagnosis. This blog is an outlet for me, maybe even a step closer to the stage of ACCEPTANCE. REMISSION is a period of time that refers to the best kind of days, the good ones! It is when the PsA (psoriatic arthritis) or psoriasis calms down and can even go away completely for a while.

Thanks for reading,

Maya xx

Featured post

Hair

So recently, I cut my hair very short due to the medication I was on. It was not only hard (pain wise) to keep up my hair the length it was, but it was hard to brush my hair every day and see it come out continuously. I went in and told my hairdresser my situation and sat in the chair as bravely as I could and watched clumps of my hair drop to the ground one by one. I want to say I didn’t care… I want to so badly say that my hair had no meaning to me because it will just grow back etc. but I absolutely cared.

I don’t hate the way my hair looks, but it’s hard for me to look at pictures of myself with my long hair from a few weeks ago. It sounds so stupid, but hair is an important part of someones identity.  I tell myself that I am lucky to not be going through something where I have no choice as to what happens to my hair. I am. But I still have the right to miss my hair.

In our society, long hair is “meant for girls” and long hair is “meant for boys”. Before all of this happened, I didn’t believe in that. I believe any human, no matter how they choose to dress or have their hair or ANYTHING, is beautiful. I chose to have my hair long because I liked it that way, not because I felt it needed to be that way. But honestly, scrolling through Instagram and seeing all my friends and girls with this long hair, hurts me a little bit. For me, my hair was the first visible step in this journey showing that things had changed for me.

In high school, I cut my hair short the same way. It was a different feeling though. I CHOSE to have my hair that way. I in some way chose my hair to be short, but there were many medical reasons as to why I chose to cut my hair shorter this time. It’s a constant reminder as to what is going on. My hair is my identity now, and I will grow to love it and handle it, just the way I will grow to handle my new way of life.

I want to write about something a friend did for me. I got a message from a friend a few weeks after I had to cut my hair saying, “Maya, I’m cutting my hair next week in honor of you”. Man, that may seem so simple, but it went a long way. It gave me the bravery and fight that I needed. I will forever be grateful for having such amazing people in my life. Thank you Natalie.

Change can be good.

Thanks for reading,

Maya xxx

The Roller Coaster

I’m sorry I haven’t written in a while. It’s been a hard time for me lately. I kind of had this envision that as time went on, things would get better. Maybe they will, but I haven’t gotten used to the simple things being so much harder than I know they could be. Getting out of bed shouldn’t feel like a chore. Opening a doorknob shouldn’t be hard or painful. Everything changed so fast for me, and I guess I’m just not quite ready to accept the changes I need to make for myself.

I have those good days… and I also have those really bad days. I’m always in pain, but I’ve stopped telling people because it doesn’t change anything. I don’t like coming off as needy, but sometimes it can feel so lonely and frustrating living with constant pain. It’s tiring. I’ve been on a roller coaster of emotions, perhaps I’m on the downhill slope lately but there’s got to be an uphill coming soon. But I’m okay. I will be okay.

Thanks for reading,

Maya xxx

The Invisible Battle

“I’m sick, you just can’t tell.”

I think the hardest part about having an autoimmune disease that is characterized by chronic pain, is what is unseen. It is hard waking up after sleeping for hours on end feeling like you haven’t had a wink of sleep. It’s the daily battles that really never end. But the hardest thing by far, is what you can’t convey in words.

The people that are constantly fighting pain inside, don’t get always receive the sympathy or understanding that they deserve. It is easy to look at someone who has a broken leg, or someone who is wheelchair bound, and clearly see that they are hurt and enduring some sort of physical pain. But it is hard to look at someone like me, fighting extreme pain every day, and physically see what I’m going through. Feeling misunderstood can be emotionally exhausting. The fatigue can look like laziness. The pain can appear as an excuse to not do things. But the truth is, it just doesn’t end. Every day is a fight.

Now I’m not writing this as a pity post. I don’t need sympathy or attention, but just the awareness that you can’t judge what someone may be going through based on their appearance. You don’t know by looking at me that my joints are in a constant state of pain and that no medicine has been able to help yet. You don’t know by looking at me that I can barely work because I can’t use my hands or stand for long periods of time. You just can’t tell; and that’s why every single person in this world should give each other a chance.

Autoimmune diseases are sneaky. They wear masks and can tear people up from the inside out. So I give my thoughts and support to the fighters out there who go out into the world every day and try to live the best life they can. I give my love to all the fighters out there who fight the unseen battles created by their own bodies. We can do it… we will fight this invisible battle.

Thanks for reading,

Maya xx

 

 

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