Novel Patient » pain

Recovery Blues

Novel Patient — Sat, 04 Dec 2010 04:26:47 +0000

The recovery process after a long hospitalization can be long, boring, and frankly difficult on so many levels. Yes, I said after a long hospitalization. I'm pleased to share I'll have been home three weeks on Monday! And while being home is an Share

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Myasthenia Gravis: A New Diagnosis Knocks Me From My Path

Novel Patient — Sun, 10 Oct 2010 05:44:20 +0000

When you are living with multiple chronic illnesses things can quickly spiral out of control. Cruising along getting through the day to day and then suddenly you are veering off the road and into the dark unknown. What started as a tiny pimple t Share

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Too Young: Invisible Illness and Pain

Novel Patient — Mon, 13 Sep 2010 18:47:12 +0000

"Too young." That is a phrase I have heard a lot in different contexts since I've been dealing with chronic illness. I've been told I'm "too young to be this sick", "too young to have to use a wheelchair", and "too young to have to use a walker" Share

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Complaining About Complaining

Novel Patient — Mon, 23 Aug 2010 03:42:20 +0000

When you're sick it can be really difficult to listen to other people's complaints - especially if they seem trivial. Excessive complaining about physical problems especially can be really wearing for me to listen to. I often find myself comparin Share

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Definitions: More Than Just a Novel Patient

Novel Patient — Tue, 17 Aug 2010 19:21:57 +0000

There are many things that define me a Novel Patient, mainly my collection of unusual illnesses, symptoms and side effects. But one of them has nothing to do with being sick. If you recall last November, I started writing a novel. It’s working title is The Alone Elevator. It’s a coming of age story set in a dystopian future about the pains and trials of going up and the importance of the freedom to think for yourself. Here’s a brief summary:

Chosen to attend the prestigious Riddlebane Academy, Kylie Lockmore soon learns secrets that turn her world upside-down. From the drug her grandmother invented to control the populace to the missing sister she never knew she had, Kylie is forced to question the truth and decide where she stands.

As I’ve been writing this novel I’ve been thinking lately about how I define myself. So much of my life revolves around and is affected by my illness that it can sometimes feel that that is all I am. But that is not how I want to be defined. I am more than a sum of doctors appointments and hospital stays, symptoms and side effects, walkers and wheelchairs. There are so many other things that define me. And it occurs to me how important it is that I remember that. I am a creative thinking feeling being. I am a graphic and web designer, a scrapbooker, a novelist. I am a daughter, a sister, a friend, a child of God. I am so much more than just a “Novel Patient”.

But how do others see me? Do they see just a “sick girl” with a walker? Or do they see the real me? I think that the more I define myself as I want to be defined the more people will see the me I want them to see. If I focus on being a patient that is what will define me. But if I focus on being a Novel PERSON… well that is what I will be and radiate to the world.

Here is an excerpt from the first draft of my novel:

The Alone Elevator Chapter 1 Excerpt

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Progress!

Novel Patient — Mon, 12 Jul 2010 03:20:38 +0000

I've been home from the hospital for 45 days today I just realized, and I somehow managed to not blog once this whole time! I feel terrible, and I hope I haven't worried anyone! But I've been very busy recovering and living my life. A novel thi Share

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Hospital Update

Novel Patient — Thu, 06 May 2010 06:16:31 +0000

I'm scared about tomorrow. Tomorrow I have to get a feeding tube put in. But let me back up. My liver function has been declining. But now my GI doctor thinks that my liver problems might be from the oral antibiotic they had me on for my ki Share

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Patience in the Hospital

Novel Patient — Thu, 29 Apr 2010 22:19:59 +0000

Though I am a Novel Patient, patience isn't my strong suit. But patience is what is required of me right now. My kidney infection has triggered a flare of my Autoimmune Pancreatitis. I've completely lost my appetite and am having severe upper Share

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Sjogren’s Syndrome Awareness Month

Novel Patient — Tue, 27 Apr 2010 00:23:30 +0000

As the month draws to a close, I am reminded that April is Sjogren's Syndrome Awareness Month. Sjogren's is my primary diagnosis, the overarching disease process that ties all (or most) or my symptoms together. But what is Sjogren's Syndrome? Share

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Love Bug

Novel Patient — Sat, 17 Apr 2010 06:12:31 +0000

Relationships are complicated enough, but adding chronic illnesses into the mix increases complications exponentially. In fact, being bitten by the love bug leads to all sorts of symptoms, side effects, and potential complications.

It’s been a long time since I’ve let myself like a guy. So imagine my surprise to find myself with a good old fashioned crush on someone. But I have all the symptoms of a crush. Fluttering in my chest. Racing heart. Warmth in my cheeks. Funny feeling in the pit of my stomach when I think about if he might like me back. But it’s also brought up a lot of confused feelings – some not so pleasant.

I feel so inadequate because of my illness. Why would he want me when he could have countless girls who are whole and healthy?

Dating me would mean dealing with all my limitations that even I don’t want to deal with – side effects if you will. It would begin with setting the date pending me feeling up to attending. Not being able to keep plans because of my illness has caused problems even with my closest friends. Breaking a date wouldn’t exactly be the way I’d want to start a new relationship, but the possibility is a reality that would come with dating me. Then when he’d pick me up we’d have to lug my wheelchair or walker on the date. The first thing I want to explain to him would hardly be how to assemble my wheelchair. At dinner he’d get a full education on my eating difficulties as I filled the waiter in on my food allergies and took pills with dinner that would allow me to digest my food. Sounds like a pretty mortifying first date in all honesty.

I worry that I wouldn’t be able to do his favorite activities with who ever I date. I can’t even do my favorite activities anymore. I can’t go hiking or horseback riding or play tennis. What if physical activities are an important part if his life? How would I ever share that with him?

And then there’s the issue of feeling inadequate due to my appearance. I’ve put on 150 pounds from being on steroids (Prednisone) to control my autoimmune diseases. Though I’ve now lost a small portion of it, I still feel so physically unattractive. Not to mention the horrible acne and hair growing in strange places the same medication has also caused. I so desperately want to be thin again and have clear skin again if only so I will be physically appealing to guys again.

Then if things do work out after the initial shock of dating someone with chronic illnesses, there’s still all the complications that can arise down the road. What if he gets tired of dealing with the day to day struggle of my illness? If we someday get serious and get married, the reality is that having children and even sex itself can be difficult with a chronic and painful illness. If we did have children, would I even have the energy to raise them?

I know. I know. Now I’m getting way ahead of myself. But I don’t really know what else to say. It feels like nothing I can say will explain how horribly inadequate my illness makes me feel. I barely have the energy to be a good friend sometimes let alone a good girlfriend.

I hope that someday I find someone who can look past my illness and see me. But until then I can’t help wishing that the love bug didn’t even bite me in the first place.

Recent Comments:

Meditours commented on Scrapaganza Meditours is committed to providing medical treatments of the highest medical standards today by wor
68mu79d commented on Fear
anna y commented on An Update and a Big THANKS!!! you inspire me. i have no idea how i came across your blog… probably through some of my crazy goog
Kris commented on The Grieving Process of Chronic Illness Thank you for writing this! Today I was looking for support on this topic- I was diagnosed with Myas
josie commented on Happy February 14th! I drop in on your site once in awhile and often can relate to what you write – especially to this. B

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