SCIG
Common Variable Immunodeficiency

SCIg Series: sometimes I really don’t want to do it.

Every two weeks, I get a feeling of slight dread when I realize that it’s time to do Subcutaneous immunoglobulin therapy (SCIg). It sneaks up on me so fast and the thought of it is a low-key mood killer. 

Don’t get me wrong, this treatment has literally saved my life and I am immensely grateful that I have the resources to receive it. Without Ig therapy, I wouldn’t have a way to build up an immune system against illness. 

I do my infusion every other Wednesday night since I work a full-time job. When the time rolls around, sometimes I feel like my body just knows. I work during the day and then I use my time at night to do the infusion to make sure I get some good sleep before the following day of work. I want to make sure I have no plans and that I clear my mind of any other stress or work that I have to do.

But, although I am very grateful, I also want to be honest. Sometimes it sucks.

Here’s a pic of me doing my treatment, don’t I look thrilled!?

SCIg

As the time approaches for my SCIg approaches, I sometimes have thoughts about my existence with this disease. So this is going to be the rest of my life? Is this routine forever? 

I picture myself doing SCIg as the years go by, and it’s such a weird thing to think about.

I don’t feel like it.

I get done with work every other Wednesday, I sit down in front of my TV, and sometimes I think about how I just want to lay down and do nothing for the rest of the night. 

I told myself I would write with extreme honesty so that other people don’t feel so alone. I have felt guilty about these thoughts for a while, but I’m starting to realize that feeling this way is okay – and I can’t control it! 

But, I have to remind myself that I am doing this for my health and well-being. I am doing it so that I can live a great life full of happiness and freedom. When I started SCIg, I truly got my life back. The clouds over my head started to clear. 

My feelings are always going to fluctuate, and regardless, I have to keep trudging along and doing what’s best for my health. 

SCIG

Even though treatments are good for us, we are allowed to feel upset about the process.

I dread my infusion because the process is long, I hate inserting needles and taking them out, and it’s overall something that is uncomfortable. Because I self-administer, I sometimes worry that I have done something wrong.

Luckily, these feelings of dread start to go away after I start my treatment. Once the needles are in and the pump is on, the hardest part is over. Then, I just get to relax (and maybe treat myself with some DoorDash). 

In these moments, you have to remind yourself of something: you are SO strong. Even if you are down on yourself or feeling guilty, you know that you’re a fighter and that you are pushing yourself to get better. Your strength is what will help you get the life of your dreams. And you should be so proud of yourself. 

Going with the flow.

A chronic illness is never a choice – it’s something that just happens to us. It’s an unexpected life change that can hit us hard.

With this unexpected life, I know that I just have to go with what comes to me. And right now, this is my life. This is my reality. And I’m going to keep riding the wave and supporting myself and believing in myself.
if you are dealing with dread over your treatments, it’s okay. You will keep being strong and you will keep seeing another day!

Want to learn more about plasma treatments?

About SCIg

Author

7 Comments

  • Kathy Forsyth

    Hi Aubrey! It’s good to meet another CVID warrior doing SGIg treatments at home. I dread doing mine as well. No matter how long I’ve been doing these infusions, I still hate having to stick needles into myself.

    • Aubrey

      Hi Kathy! I’m so happy to have another CVID warrior here! It’s always good to know I’m not alone, and remind ourselves that it’s okay to have these feelings.

  • Anne

    It’s really interesting to read your account of scig and I will read your other posts. I currently have IVIG and spent four days every six weeks on a hospital ward. I think I would be happier about it if it actually gave me life back but I just have to accept that it’s keeping me a live and that’s the best I can hope for. I’ve conisdered doing it at home but I really dont’ know how I feel about it. I don’t mind needles but putting them in myself is scary. I remember the little injections I used to give myself a few days after my baby was born and even though they were subc. I always thought I was going to vomit afterwards.

    • Aubrey

      Thank you! I have never experienced IVIg, but I do like that I can do SCIg in the comfort of my home. The responsibility of the whole process can be a lot, though. The needles make me so queasy… medical things are so hard!

  • Nick

    I just got diagnosed last wednesday and eventhough it’s still hard to accept I have a chronic condition (especially because I only have had mild infections during my life), I’m very happy I already came across your blog this early in my process of accepting living with CVID. I dread the fact I need to do infusions to be healthy, but your honesty really helps me in my decisionmaking. Thanks and keep it up!

    • Aubrey

      Thank you for your kind words! Receiving the diagnosis and starting treatment can be a really difficult and shocking time. But, it does get easier. I love hearing from other fellow CVID patients!!

Leave a Reply

Your email address will not be published. Required fields are marked *