Say you won’t let go.

This blog took a lot of time to write, and it might be a little all over the place but I had to insure I took everyone’s feelings into consideration, but this is about as raw as it gets.

You don’t ever realize how lonely a terminal diagnosis can make you feel until you hear those words, “five to seven years”. Terminal illness is lonely, crowded, quiet and loud all combined together. There are people constantly asking what they can do, how they can help and promising you companionship, but in reality none of it helps. See, I don’t know what can be done, I don’t know how they can help and I am too proud of person to ever ask for help. Some days I don’t want to be bothered by anyone, including K and my mom, but in that same sense I wish I had a million people around me.

I’ve come to realize that one of two things happen when you share your diagnosis; people either guarantee their support and surround you or they withdraw, afraid of what you have and what might come of it. You can’t blame the people who withdraw, it’s only instinctual to protect yourself from pain, pain caused by mourning a loss that you know is inevitable or actual physical pain from an illness. That’s the thing though, anything and everything I have is not contagious, I could have a 104 temperature and coughing and still would not be contagious to anyone. Don’t believe me? My parents, nor my husband have ever caught one cold/infection from me while I’m out for the count.

During a conversation last night, it was mentioned that my motivation and great attitude make my conditions seem unbelievable. As much as I try to understand that, I also know that every single day is a real struggle, especially as of late. After Monday night’s emergency room visit, my breathing has not gotten any better and I’m still on prednisone. I’ve developed a cough that is sickening just to hear and after my latest chest CT results, it looks like I have another disease to add to my list of chronic illnesses, because hell, what’s one more at this rate. Despite all of my conditions, yesterday I pushed myself to an unhealthy level of work… I steam cleaned my carpets, moved furniture, and dusted our entire house (it’s a two-story).

After cleaning, I decided making a grocery list while lying on my freshly clean carpet would be a great idea, what I didn’t take into consideration was the fact that once I’m down, I have to get back up. I was on the floor for about an hour before my breathing got pretty bad and I realized every time I would try to push myself up, I would start hyperventilating. I had text a friend saying I was on the floor and making light of it, J knew for some reason that I was actually in need of help and came right over. Her husband, my sister-husband, pulled me up and put me on the couch. J stayed with me until I K was supposed to be home, but his appointment took longer than expected and I wanted to get my grocery shopping done. So I put on some real clothes, gathered my bags and put on my respiratory mask.

We made our way through Vons at a slow pace, as every step hurt and I found myself with labored breathing. The awkward stares from people passing by made shopping a little weird, but I’m used to it by now. Walking each aisle so I don’t forget anything, I came to one aisle and had to stop and take a breaking, leaning against a bunch of cleaning products. We finished our shopping trip and J had to load the majority of the groceries because once again my body just isn’t up to working how it’s made to. I feel helpless and worthless. During these last six days, I’ve made dinner maybe twice, not only because I was fighting a virus, but also because it was just impossible; I can’t help but feel like I’m failing as a wife. I have a hard, swollen belly from the steroids I’m on I sometimes can’t stand for more than a couple minutes. I go days without washing my hair, not because I’m lazy but because every single hair follicle hurts and washing it only makes it worse. There are days only baggy shirts and chonies are all that are comfortable because the feeling of cloth on my skin feels like a thousand knives, when my feet are so swollen that even flip flops make walking hurt. What’s even more difficult, I have to rely on K and mom for more than I should, but it’s my only choice.

Those are things most don’t see or realize because I put on a brave face and keep going. Here’s what I’ll say to those who ask what they can do or how they can help. Just do. Don’t ask, because like I mentioned, I’m too proud of person to ask for help. If you want to come visit, just come over, I don’t usually move from the couch and if I do, it’s at a slow pace. If you want to bring food, do it. I don’t have any food restrictions, other than no salt. If all you can do is pray, pray as much as possible, but please don’t ask what can help and how… just do.

2 thoughts on “Say you won’t let go.

  1. Oh, Julianne, I am so sorry for all that you have gone through and what you will still go through! I have such fond memories of you hanging out with Mandy when you first started school at St. La Salle. I feel so bad that we didn’t stay in touch. What a beautiful bride you were!! I’m so happy for you. I will keep you in my prayers and if you would ever like to get together for lunch or something, just let me know.

    Like

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