Personal

Trying to Find Some Faith

faith
fāTH
noun
  1. complete trust or confidence in someone or something.

I remember when I was first diagnosed I had this thought that this was just one set back. I still had optimism. I started this journey with hope. I thought to myself “Okay this sucks, but it’s not the worst thing and I can find a purpose in this.”

And I did find a purpose. I started this blog and through it I was able to connect with so many beautiful souls who were also going through their own battles. We inspired each other. But again, I was still optimistic. I had faith in this process. I didn’t have complete faith in myself (since it is my body attacking itself) but I had enough courage and strength and perhaps some nativity to push myself.

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Now I’m just lost and questioning what I should have faith in.

I had faith that we would find the right medication. I was told I was mild to moderate so I wouldn’t need steroids. Then I was told nothing was effective enough so I needed steroids. Then it was that I can’t be on steroids for a long time so we also have to use biologics. But I knew I just had to keep trying. We would get there. And for awhile I was feeling better. I was doing things, going places, working, and applied for graduate school! But through the whole process it was always up and down, but again I trusted the process and thought I will get there.

I had faith that my body would figure it out. My blood work was showing effectiveness of Humira. But these last two weeks feels like I’ve back tracked. My fatigue has been kicking my butt again. Getting out of bed every morning has become such a hassle, it feel so much easier to just throw my hands up and sleep the day away. Not like I can do much else anyways. I haven’t had solid poops in almost 2 and a half weeks now and the blood has returned! God it’s been so painful again too. The crying poops. The ones that you feel like you can’t even clench your cheeks to stop it from happening (there was one occasion again where I couldn’t in public). The ones that make you so unbelievably nauseous. Don’t miss these poops.

I had faith the other side effects would be gone now that I stopped Prednisone. Just kidding! I recently started experiencing chest pains again. And the hair loss! Every time I go to stroke my hair, strands upon strands come out in my palms. I have to clean my hair brush every 3-4 days and wipe my shower down every time because my shower walls are just painted with my long strands of brown hair. I have even managed to again clog my shower. There is hair everywhere! I don’t know who sheds more, me or my dog. I’m even getting joint pains in my foot again, which irks me because I was rather excited to be done with that.

I had faith that what I was doing was enough. Probiotics, being diligent with my shots, staying away from triggers, trying to at least go out for a walk with my dog everyday, taking the god forsaken Metamucil, drinking more water, drinking shakes to gain weight. I try but it never seems enough so then I falter because I think, what’s the use?

I feel like I’ve lost faith in myself. I’ve lost weight again, can’t seem to enjoy anything without having to rush to the washroom, and just feel so uncomfortable in my body. I feel like a prisoner in my body again. It’s been 4 months and I’m doing my injections weekly. When does it get better? And even when I try to just put a brave face on and attempt to live life, something has to happen.

For example, I went to the Ed Sheeran earlier in the week and I was running to the washroom pretty frequently even after taking an Imodium, but I was with my best friend watching one of our favourite artists (we’ve seen him 3 times now) and I just felt alive, even if it was just for a second. I felt like myself again just living in a beautiful moment that was my life. I wanted to cry with so many mixed emotions running through me. Even with running to the washroom, I was happy. Then on my way home I had an accident (poop accident, not car accident) and it was like I was set back into the reality of my illness. It still had control over me. So I proceeded to cry in my shower, grateful that at least it was in my car while I was alone, so I still had a shred of my dignity left.

I’m afraid to go out at this point because every time I try something has to happen and I need to sprint to a washroom. The desperation is so real that a poor casino guard could sense it through my voice and didn’t even bother I.D.’ying me because he literally knew that this girl just really needed a washroom. I passed by him later in the streets while he was out for a cigarette break and he gave me the most pitiful smile.

I know this is a pretty lame post and lately I feel like I’m more depressing than uplifting and the last thing I want is for other people to be discouraged in their own journey. But it’s the reality. It’s tough. It is going to be a journey that will challenge you in so many ways. I want to say someday I will get there and then I can be that inspiring, strong person everyone seems to describe me as. But it’s hard to see that right now.

P.S.

I apologize for the lack of updates. Obviously I’ve been in a funk and I think it really hit me last week because I was asked to be a part of another amazing blog that features so many inspiring bloggers. Our posts are meant to uplift people, inspire them, and help them grow and I feel like I am not in a mental state that can really uplift someone else. Who is going to be uplifted as I sit here complaining that I can’t even see the positives anymore like I used to?

I am super honoured for this opportunity though and will get to posting with them, hopefully nailing that positive tone and when I do I will definitely share with you all.

To all my readers and supports, thank you from the bottom of my heart for always pushing me to keep fighting, especially in times like this where I struggle to fight for myself. You are all apart of the strength I have that everyone sees.

With love,

 

Bee

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4 thoughts on “Trying to Find Some Faith

    1. I’m sorry I took awhile to respond to this, but I am slowly learning to accept the feelings of being down and writing about it. I’m glad other people see a value in this as well. Thank you for your support and kind words!

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  1. I think it’s just as important to share the real, raw, frustrating truth of living with a body that betrays you as it is to share the victories. it’s all part of the story and I know I’m grateful to read posts from the Spoonies I follow that show not everything is strength and triumphs. It’s important to know sometimes it kicks your a**.
    (And for what it’s worth I had an incident last year that lead to my entire upstairs carpeting needing to be shampooed…..talk about having NO dignity left!)
    *Also I nominated you for the Liebster Award! https://xunniemarie.com/2017/07/30/the-leibster-award/

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    1. I”m so sorry I took awhile to respond to this. I did see your message earlier and it did warm my heart. I’m glad to know that there are people who appreciate my depressive rambles, especially with everything going on lately. I’m also super sorry you had to go through such an incident but I’m sure by now you can look back and laugh a little about it just a I’m learning to laugh at what I can! And you’re so unbelievably sweet for the nomination! Thank you for everything 🙂

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