Parts of Me

Life is lived outside the doctor’s offices. Life isn’t just about test results, exams, referrals and prescriptions. I do, I live a life outside the appointments. It’s good, full of fun, great people, and normal people activities. It’s also full of thoughts that I wish I didn’t have to think. It’s full of thought processes I wish I could skip over.

There’s a part of my life that I have fought, that I have tried hard to say that I have accepted. I am Chronically Ill, that isn’t going to change. I have to come to terms with this. I have to stop fighting the thought processes that go along with that. I have talked great lengths with my therapist that I’m on the edge of acceptance but I’m not there yet. I still fight it. I still get scared, because what does acceptance of all this even mean? In part, it means letting go. It means letting go of the healthy me that is no longer. It means saying goodbye to what I thought was the future that was ahead of me. It means accepting that I am not completely in control. It means having to learn to be okay with not being in control.

There’s a funny thing about that, I never thought this would  be an issue. Yet here are coming up on what I consider the year mark of when I started getting sick and I’m still having momentary freak outs over the loss of control that these two illnesses have brought into my life.

There’s also an interesting thing that happens when you get a chronic illness, you have to learn how to have that condition. It is true there is no set way to have Lupus or APS, but I find myself occasionally thinking, I just simply do not know how to be this sick person they seem to require me to be. It was pure torture to start taking so many medications at first. I went from relying on natural remedies and holistic cures, to having a miniature pharmacy in my bedroom. Yes, I am 30 years old and I have a pill-box, with AM and PM slots, and a key fob that I carry my pills around with me. It wasn’t a gradual occurrence, it was abrupt, like slamming into the side of a wall. It hurt my soul about as much as well. Then over the course of a few months I found myself on an anticoagulant for the rest of my life, and then a few months later I was placed on a high risk immunosuppressant. Both of which require frequent lab work because they are risky medications.

So what does acceptance really mean? It’s learning to love me again. It’s learning to trust my body again. It’s learning to trust these new people in my life, my doctors. There is a whole lot of learning going on. I still feel like I’m navigating a foreign land with a really shitty map that I’m having to write as I go along. I’ve met an awesome tour guide along the way, and slowly we’ve added others that have specialties. Trust is building. My footing is becoming firmer. One day I will be able to say I have fully accepted this part of my life. One day Lupus and APS will just be, parts of me.

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14 thoughts on “Parts of Me

  1. Baby steps. Acceptance will come when it’s time. I know it’s easy for me to say when I’m not going through it but I think with anything that is so life-changing you just have to take it one day at a time.

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    1. Kat, that is exactly right. There are moments I’m in complete awe of where I am today compared to where I was in August. I was devastated. No, that’s not quite right. I honestly thought I was about to die. That’s a rather disturbing experience to go through and I’m still suffering from PTSD from that ordeal. Some days are worse than others. Some days it’s a day at a time, some times I have to take it hour by hour. That’s okay, it’s just remember to keep moving forward and try not to get stuck like I was. Thank you for your words of encouragement, they mean a lot. I appreciate the support! 🙂

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  2. Wow, I really admire you so much Nicole, for posting this, allowing us to read what is going on with you. You are truly inspirational to us all. Take care my friend and I hope that the huge support you have from your blogger friends will go someway to helping you through this.

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  3. Wow, I really admire you so much Nicole, for posting this, allowing us to read what is going on with you. You are truly inspirational to all of us. Take care my friend and I hope that the huge support you have from your blogger friends will go someway to helping you through this.

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    1. Hugh, thank you. It is an odd time in my life. Part of why I started my blog was to reach out to folks going through similar things or that have been. Partly to help support them but also it has also become a form of self therapy. The support and encouragement I get from my blogging friends is definitely one of the things that helps brighten my day! Thank you for being part of my support team friend! Hugs!

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  4. Nicole, this was very inspiring! I feel like I understand a lot of what you are going through, although I would never presume to think I know exactly how you feel.

    But I do understand the death of the old ways. And it’s hard to lose your past, especially when it was preferable in some ways.

    I really admire your honesty, bravery, and candidness. Keep doing what you are doing!

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    1. Liz,
      Thank you for understanding and reaching out. That is part of why I think I fight the accepting part of this process. The old way was definitely preferred. It was easier in so many ways. It was also more certain. It is true that nothing is certain but I can tell you when it comes to the future things seemed a lot more certain prior to developing these two illnesses. I also know everyone that faces these challenges (or similar ones) do so differently. I had no idea they would affect me the way they do. There’s still this part of me saying, what happens after acceptance? What happens when I allow this all to be my new normal? Even as I type that I realize how silly that sounds. As time passes it already is becoming routine, and normal. I often catch myself out to dinner with friends and I’ll make a nonchalant comment about an appointment and they look at me like I’m an alien. Things that have become routine to me, still seem foreign and freakish to them.So it is already happening. I just need to let it, and as they say, get out of my own way. Easier said than done. 🙂

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  5. Hi Nikki, I think acceptance is the hardest part. I’ve not yet been able to accept any of this shit that has happened to me. You truly inspire me, though. I wish I had the positive attitude that you have. It’s just really difficult to come down with all these diseases and to just accept that, to no longer be the person I once was and will never be again. Take care, girl. I’ll send you an email next week. I’ll be gone from tomorrow until probably Sunday night. Hope you are feeling “okay.” Talk to you soon.
    Peace and hugs,
    Tammy:)

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    1. I agree, acceptance is really difficult. I’ll keep an eye out for your email. I can’t say I always have a positive attitude about all this. There are still plenty of moments I’m down right miserable and wish it would all go away. I just have to keep reminding myself that life keeps on going, that I have to figure out how to make the best of what I have left, even if things have been taken from me. I still have my heart and soul. Those are parts my illnesses will not take from me until well I am no more. They may leave scars on my body, they may cause pain and affect my demeanor, attitude and ability but I’ll be damned if I will let them take my heart and soul until the end. I will hold onto those parts of me as long as I can. 🙂
      Much love lady and hope to hear from you soon!
      Nikki

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