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chronic illness

HAWMC Day 1: Why I write

I am super excited to be taking part in the Health Activist Writer’s Month Challenge which is being hosted by WEGO Health! The entire month of April will be dedicated to sharing our stories as well as educating and raising awareness!

The first official prompt of the month was to talk about creating a health time capsule but as you know I’m a bit of a rule-breaker. To quote the pirates, is more of just guidelines right?

I have decided to kick off the month by telling you why I write. Over the last four years, I have shared what caused me to begin blogging as  I was looking for an outlet and a safe place to share my feelings and process the challenges of infertility and health. As time went by, A New Kind of Normal has become a way to encourage others who may be facing the same health situations as well as to raise awareness of the illnesses that are out there that need attention. Even then, if someone had told me that I would still be blogging almost five years later and gearing up for my second blog conference I would have died from laughter. I had absolutely no idea what the blogging world held for me.

Maybe more importantly than why I started to blog is the reality of why I continue to blog. Many times over the last four years I have considered closing up shop and quitting. I have had moments where I had no idea what to write and felt like I had no meaningful content left to offer. I have had moments where I’ve felt completely inadequate to try to offer hope to readers when I felt so helpless myself. I have had moments as recently as this weekend when I’ve felt like I physically didn’t have anything left to give.

But I press for one reason. Ok, maybe two. One – I feel like God has directed me to blogging as a ministry. And two – because of you amazing readers. Every conversation we have on twitter keeps me going. Every facebook comment boosts my love of connecting with others. Every email I receive from a reader thanking me for writing that always comes at just the right moment brings tears to my eyes and I feel in my heart that this is right where I should be.

So thank you readers for being a part of A New Kind of Normal. Thank you for allowing this blog to be a place where you can find encouragement, support, and hope as we walk this road of chronic illness together.

 

 

chronic illness

Choosing To Fight



If  you follow me on Twitter, you may have noticed that I had a not-so-hot doctor’s appointment yesterday morning. This past weekend was the worst flare I’ve had to date. I was in bed pretty much from 5pm Friday until 7am Monday. Nothing, I mean nothing, seemed to be helping the pain. Even my prescription medicines were not touching it so on Monday I started calling doctors. The pain clinic was my first call and since prescriptions cannot be changed over the phone, the nurse set up an appointment for 8:15am yesterday. I also called my rheumatologist who tweaked my dosages of my medications for fibromyalgia (we had discussed the possibility of needing to up the dosage at my last appointment so we both felt comfortable with phoning in the change versus needing to drive an hour for an appointment). I see my primary doctor next week so I knew there wasn’t a point in calling because there was no way I would be able to be seen before my scheduled appointment.

 

The visit to the pain clinic was supposed to be a short one which turned out to be not the case. Thirty minutes after my scheduled appointment time, the doctor finally came in and being as I was the only patient there I was already frustrated. The gist of his response to my pain-filled weekend was to be thankful that the flare didn’t last any longer than it did. I just need to come to terms with major flares being a part of my life and be ok with not having medications to treat the pain. He did not want to increase my dosage (although we had discussed the possibility at my last appointment) however he agreed to give me a extended release pain medication to help prevent pain from waking me up in the middle of the night. The catch (there always has to be a catch, right?) is that for now he wants to go back to seeing me every 30 days versus 90 for drug tests and pill counts. On the way out the door, he let me know that I was overweight.

 

Needless to say, I left the appointment angry, frustrated, and defeated. I was angry that it seemed that he had no concern for my quality of life as a patient. I was frustrated that, even though it was never said, he seemed to be thinking that I was exaggerating my pain in hopes to get more medication. I was defeated as  it was if  the prescription he handed me said really said “give up hope for ever having a normal life.” The twenty minute drive to work seemed to last an hour as I attempted to process everything that had just happened. When I pulled into my parking space, things changed.

 

As I took the keys out of the ignition, I looked down and saw the word “fighter.” It served as a powerful reminder and I made the conscious decision to not go down without a fight. I am not going to accept that my life is over and any hope of relief is gone. I am not going to allow one jerk-faced doctor take my dreams from me.

 

I can and I will fight. I will fight knowing that my God is bigger than my pain and He will provide strength to press on. I will fight knowing I have an amazing family loving me through it. I will fight knowing that I have strong and inspiring women who are traveling the same road fighting alongside of me.

chronic illness

Working With Chronic Illness: My Story

Ever since I was a teen, I planned on being a working woman. At that time my plans were out of an idealistic view of what I thought it meant to be independent (not sure I was planning on being a wife and mom at the time) but still, I knew myself and that I liked working and the sense of accomplishment it brought. I would consider myself an almost Type-A personality so checking items of a to-do list and having a sense of routine puts me at ease.

 

I went to college for Music Education but realized halfway through my student teaching that the classroom was not for me. That was also the semester that I became ill and was diagnosed with endometriosis. Determined to find my dream job (and finally answer my call to the ministry) I began my graduate studies with an emphasis in Pastoral Care & Counseling. Thanks to illness, it took me 6 years to complete a typical 3 year program but I finished! I feel in love with chaplaincy during my half-unit of CPE but the long hours are keeping me away at this point.

 

So for now, I am an 8 to 5’er in a job that has nothing to do with either of my degrees but is still one that I enjoy (most days). While it does bring in added income and a sense of accomplishment, it also depletes my energy quite a bit, especially in my current state of health. While I’m doing what I need to do to get by, I’m working on figuring out a way to start my dream job which will include continuing writing here at A New Kind of Normal, finding ways to speak more  and share my testimony, and open a non-profit to offer counseling and support to individuals with chronic illness. Anyone that has ideas on how to get started on any one of these things please let me know!

 

I get many questions about why I work since I struggle so much health and energy-wise, so I thought I would share some of my reasoning & answers with you. I have also asked 3 other lovely ladies to share their stories of working with chronic illness which will be featured over the next week or two! We all answered 8 pretty standard questions that are often asked when one works with chronic illness so hopefully our stories can help enlighten you!

 

1- What are your illnesses? endometriosis, Celiac disease, fibromyalgia & IC

2- What kind of work do you do? My title is Operations Coordinator but I oversee the administrative office of the maintenance area for a university. I provide customer service, handle invoices, and telecommunications.

3- Does your work match up to what you have a degree in (if applicable)? Not in any way, shape, or form!

4- Are you working because you want to or out of necessity? My current job, I am working out of necessity for health insurance. After my temporary disability this winter, we were hoping that I would be able to stay home but when I was denied health coverage by my husband’s plan, it was back to work. My time on disability did let me know that I would go absolutely batty without some type of job but I would like more freedom to be able to choose my work not based on health insurance.

5- How does your work affect your illness & overall health? At the present time, it consumes pretty much all of my energy but before this recent resurgence of endo, it would fatigue me quite a bit but I as still able to enjoy my evenings at home with my family. My job at times can be stressful which can add to flares as well.

6 – If you had the option, would you quit? I don’t think I would quit working all together but would look into the option of working part-time.

7- What is the positive benefit of working with chronic illness? The income is an obvious bonus but I enjoy the interaction with my coworkers and feeling like I am part of a team.

8- What is the negative aspect of working with chronic illness? Not having the energy I would like to after work hours is definitely a negative. Also with a limited number of sick days, I don’t always have the option of taking time off to rest when I’m flaring.

 

If you work & have chronic illness, I would love to hear your answers too!

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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