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Happy February 14th!

Novel Patient — Mon, 14 Feb 2011 08:01:37 +0000

Single Awareness Day (also known as Valentine's Day) is upon us! Relationships (or the lack there of) are on the mind. Relationships are hard. Romantic relationships are harder. Even for healthy people. Having a chronic illness makes it 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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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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Celebrate!

Novel Patient — Thu, 29 Oct 2009 06:49:31 +0000

: Image via Wikipedia

On Friday I turned 26 years old! And I really had something to celebrate! The night before I got a call from my doctor letting me know that the lab tests were a mistake and I don’t have a blood disorder! I was so relieved I almost cried. So on Friday I was able to celebrate my birthday worry free!

Even being able to celebrate my birthday not in the hospital is something I’m grateful for as I spent my 24th birthday in the hospital and my 25th birthday recovering from just getting out of the hospital.

So this year I celebrated by giving myself a much needed pampering. My mom and Melissa (my caregiver) joined me in getting our hair cut and colored. I dyed my hair red with brighter red and golden highlights. Then we went out for a birthday lunch at one of my favorite restaurants in the mall. Afterward we went to Bare Essentials and got our make up done. Then we went shopping for a while and Melissa bought me my birthday present – a new pair a jeans that actually are small enough to fit (another thing to celebrate – weight loss). Finally we got all dressed up and went out for a nice birthday dinner!

When living with a chronic illness it can seem like its one bad thing after another. So it’s especially nice to have something to celebrate for a change!

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Taking a Stand

Novel Patient — Wed, 21 Oct 2009 05:45:51 +0000

Sometimes in the face of adversity you just have to stand tall.

: Image by Ethan Hein via Flickr

My doctor woke me up on Sunday morning to tell me that I may have a blood disorder – Polycythemia. Unless there’s been a mistake either with the lab or the blood draw itself, I am making too many red blood cells and my iron is much too high. He was hesitant to tell me what might be causing it, but if the repeat test I got today still comes back high he wants me to go see a Hematologist. I looked it up myself and the possibilities of the causes are rather frightening… ranging from cancer to a terminal illness to kidney disease. Needless to say I’ve been feeling rather anxious about it.

In addition, I’ve started tapering my Prednisone dose again post face drooping. My neurological symptoms of my brain inflammation have been coming right back. My tremor especially has been so bad I am having trouble doing simple tasks. It’s so frustrating I just want to cry.

So this evening talking to Melissa, my caregiver, about it I broke down. I’m so tired of it being one thing after another! It’s two steps forward one three steps back. So I decided to take a stand. Literally. I wanted to see how long if at all I could bare the joint pain I get while standing.

We turned my wheelchair around so I could use the back of it to hold myself up, and Melissa sat in the chair to help weigh it down so it wouldn’t tip. Trembling I slowly pulled myself to my feet. It was agony. But I shifted my weight until I found a bearable “sweet spot”. And then I stood there for a over a minute!

It was excruciating and exhausting. I needed to lay down afterward and take some extra pain medication. But the victory was well worth it! I stood for longer than I’ve been able to in over a year! I showed my illness who is boss!

I still have high hopes that the Sjogren’s specialist I’m seeing on November 9th will have some new treatment options for me that will significantly help my joint pain and neurological symptoms. But in the meantime, I will continue to take a stand against my illness.

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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
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Prednisone Pounds

Novel Patient — Tue, 22 Sep 2009 04:38:45 +0000

For about 3 months I've been on a diet to try and loose the 150 pounds I've put on from the Prednisone. I decided to do Take Shape For Life/Medifast because it seemed like a very safe diet as it is often doctor prescribed for weightloss. Also my Share

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Taking Femininity Sitting Down

Novel Patient — Fri, 22 May 2009 03:35:46 +0000

Since I've been in a wheelchair, I've found it hard to feel feminine. The chair itself is hardly girly with its plain black frame and shiny red plastic base. But that isn't the heart of the matter. I've gained a ridiculous amount of weight from Share

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Mirror Images

Novel Patient — Sun, 25 Jan 2009 07:58:52 +0000

It's easy to believe that it is who you are inside that matters when you like the person you are on the outside. I spent most of my life as a thin and able bodied person. I was often told I was beautiful or that I looked like a model. And thoug Share

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Some Bad News

Novel Patient — Thu, 22 Jan 2009 16:07:49 +0000

So I got a call from my doctor on Monday. Apparently some lab tests had come back and my liver enzymes are elevated. It could be from being on Prednisone for so long and the over 100 pounds of weight it's made me gain in the last year. It could Share

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Post tags: autoimmune, autoimmune diseases, autoimmune hepatitis, doctor, liver, Medication, News, Prednisone, weight