chronic illnessinfertility

Your Ask Me Anything Questions Answered!

It is finally time to answer all of the Ask Me Anything questions you all asked about living with chronic illness! Wow, you guys did not take it easy on me at all! These were some good ones!

Alicia asked:

How can others support you as you begin considering a ministry to others with chronic illness? What resources could we help provide? How specifically can we pray for you with this?

Thank you so much for your support as I pray about this endeavor! I definitely want to put a lot of prayer and preparation into building this ministry as I do not consider it something to be taken lightly. I ask for prayer for not only myself but for the community as God would go before even the first meeting and prepare the hearts of those who will take part. Lisa Copen’s book How to Start A Chronic Illness Small Group Ministry has provided a wonderful foundation and I plan to follow the HopeKeepers model that is a part of Rest Ministries. My goal is to start the local ministry this fall!

Also, any advice for someone, like me, who wants to blog more but struggles to find prompts, time, etc.

This is a struggle for me too! I think being a part of a blogging community, like SITS, is a great way to find blogging support. I know that they are a big part of why I continue to blog! If you check out my blogging resources page, I have listed my favorite sites and ebooks that I have found helpful over the years. I have also found Pinterest to be a HUGE resource in finding ways to organize my blogging and better manage my time as well as find endless prompts and writing tips. I have a list of my blogging pin boards on my resource page as well! I am working with another blogger to start a Bloggers Book Club (where we will work through various blogging books as a group) so keep an eye out for more information as it comes!

Mary Fran asked:

Maybe this is too big of a question, but how do you hold on to your faith through the pain?

This is definitely a big one but it is a big part of my journey and a big part of why I blog. I grew up in a church where you didn’t ask questions (especially not God) so when I started struggling with chronic illness, I had a hard time trying to figure out how to balance my faith and my illness. I had to figure out how suffering and pain fit in with my understanding of who God is. Was my illness part of God’s will? More importantly, did He cause me to be sick? I wrestled with this question for some time. Thankfully I had professors and a peer group that helped me work through it (I was working a chaplain intern at a hospital when everything hit the fan so to speak). In my journey, I came to the place where I accepted that I would not always have the answers and that was ok. Instead I could trust in the character of God and His promises. I don’t believe that He willed me to be sick but I do think He gives me the choice of how to respond to my sickness. I can either allow it to make me bitter and shut down or I can choose to find a way to honor Him through it. Being conscious of that choice helps me hold onto my faith even through the darkest times. It doesn’t mean that I don’t struggle or get angry because I totally do. Its during those times that I cling to His promises even tighter.

The Norwegian Girl asked:

What is your biggest dream in life?

That is such a tough question! One of my biggest dreams came to life when I became a mom. During our infertility struggles, I was not sure it was ever gong to happen so when they placed Abby in my arms, my greatest dream became a reality. Outside of that, I think my biggest dream is to grow A New Kind of Normal into a full-scale chronic illness ministry!

Alisha asked:

I know you were blessed with a daughter through adoption (I actually have 2 adopted siblings, so I understand the gift of adoption) but is it hard to not be able to be pregnant and carry a child inside of you for 9 months? How do you deal with it?

I am incredibly blessed to be a mom through adoption. I could not love Abby any more if she had come from my body. But I would be lying if I said that I did not still grieve the loss of my fertility and the inability to carry a child. It still hurts very much. My family seems to be very fertile (I’m the only one in my generation that I know of that has struggled to get pregnant) so I feel like an outsider at times. I think my hysterectomy was much harder on me mentally and emotionally than it was physically. My scar is a permanent reminder of what will never be. Everyone jokes about how you always get pregnant after you adopt and knowing that even the greatest amount of  medical intervention would allow me to experience pregnancy hurts. The way I deal with it is that I recognize my loss and give myself permission to grieve when necessary. Grieving my loss of fertility does not mean that I love Abby any less or that I am not thankful for her. It took me awhile to accept that. The sting has gotten less and the moments of grief occur less often as time goes by but I don’t think it will ever go away completely. It is now a part of my story and hopefully being able to help others who are traveling a similar journey will help give my pain purpose.

Cheryl asked:

How are you telling people about the leave decision and filing for disability? I find it hard and feel like I get this “slacker” look from folks when I say the pain leaves me in bed much of the time and all I can mangage is a small bit of writing….probably b/c so many people abuse the system which makes it harder for those who truly need the help.

I completely understand what you mean. I have been more vocal about my decision to pursue disability online than I have in person. I did have some “but you don’t look sick” comments from individuals at work when they heard about my medical leave but those close to me knew the truth. I think my surgical history (and my recurrent hospitalizations last summer) maybe made it a little easier for some to understand. I do think the abuse of the system makes it harder on those who really need it to not only get the help they need but receive the validation about the reality of their illness. I am not hiding my decision to file for disability but I’m not sharing many of the details. At this point in my journey, I need support not criticism and judgement.

Thank you to everyone who left questions! I really enjoyed it! As always, if you have other questions or want to chat, please feel free to email me or contact me via Twitter or Facebook!

 

chronic illness

Guest Health Activist: Meet Bola!

For day 15 of the HAWMC, WeGo Health paired up participants to guests on each other’s blogs! I was very excited when I saw this prompt! I love meeting other bloggers and giving them a chance to share their story and teach us a thing or two about keeping hope in spite of illness here at A New Kind of Normal! I was paired up with Bola who blogs over at RealityNibs.com! You can also find her on Twitter, LinkedIn, and Facebook! Please give her a warm welcome and be sure to check out her blog! 

 

Last year at the end of the 2012 Blog Challenge, I told Wego Health that it would be nice to have a prompt which required each Health Activist to interact with other participants in some way. So, when I had the option of doing just that this year, I jumped at the opportunity. I even requested to be paired with a blogger who has fibromyalgia!

My name is Bola and I am on the verge of recovery from Chronic Fatigue Syndrome. CFS and Fibromyalgia are different manifestations of the same underlying condition (hypothalamic dysfunction) so I wanted to be paired with someone who was experiencing the other end of CFS/FMS. In addition to having this condition in common with Jamee, my situation was triggered by surgery for fibroid tumors which tend to occur for the same reasons as endometriosis and sometimes even occur together.
I really, really don’t like the fact that I’ve been unwell for eight years. But, facing this has brought many things into my life that I wouldn’t give up:
1. My intuition as well as my daily sense of my spiritual connection have been turned way up.
2. Despite my longstanding commitment to my emotional health, there are certain things I would probably have left under the rug if my health situation hadn’t made the stakes higher e.g. certain truths about my childhood.
3. Blogging!
I grew up in Britain and Nigeria then settled in the San Francisco Bay Area where I’ve had a marketing career in Silicon Valley. Unlike Jamee, I am single and I am looking forward to building a family at a level that I would never have known how to do before the earthquake that CFS brought into my life. Actually, I’m inspired by the way that Jamee has paid attention to her family life despite her health challenges.
I literally don’t know which direction I’m going to take tomorrow and I find the uncertainty challenging. But even as everything I expected to lean on has fallen away, love has come into my life in all sorts of stunning, unexpected ways. I’ve come to the conclusion that John Lennon really was right when he sang about love being all we need.
Thank you very much for having me here on A New Kind of Normal!
Thank you for sharing your story with us Bola! Be sure to check out her blog RealityNibs today where I will be sharing about my journey with endometriosis!

 

bloggingchronic illness

Inspiring Bloggers & Health Activists

HAWMC Day 14 prompt: Thank a few of your fellow health activists for what they have done.

As I have said numerous times, words cannot express my gratitude for the support and encouragement I have found through the online health community. Through the blogging and twitter community, I have been able to meet some amazing people and develop friendships that I cherish very deeply. I continue to be inspired by fellow warriors tenacity and dedication to stay positive in spite of illness and to do everything they can to raise awareness and educate about their illnesses.

If I were to list every blogger that has had an impact on my life, I would be writing for weeks. These are just a handful of activists that continue to make a difference not only in my life but in the online community:

Chronically Creative: I had the opportunity to “meet” Emily several years ago and I continue to be inspired by her faith and her positive outlook on life. Her baking posts make me drool all over my keyboard so if you are really hungry, you may want to grab a snack before visiting her site! Her mission in blogging is to “live creatively in spite of illness and hope to empower and encourage you to live a creative life whatever your circumstances” which I love. She runs a Random Acts of Blogging Kindness program which is amazing and I have been personally blessed through this ministry that she has created! She truly has a heart for others and her love of Christ is evident in all that she does.

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Felicia Fibro – Life with Fibromyalgia, Empowered – Felicia’s blog is not only a great source of inspiration, it is a great source for resources about living a full life in spite of fibromyalgia. She has created a great list of resources for those newly diagnosed with fibro and I have referenced her blog several times for tips for traveling which are helpful for anyone with chronic illness. She is a huge advocate for fibromyalgia patients and stays on top of research and developments in treatments. She is such a source of encouragement and has helped support me through challenging moments in my journey.

Hope Whispers – I had the honor of crossing paths with Kim several years ago and she has been such a blessing. She is always quick to offer a word of comfort and support. She has Budd Chiari Syndrome which is a rare liver disorder and is currently waiting for a liver transplant. Through her story, my eyes have been opened to everything involved in the transplant process and while I have always been an organ donor, her story and her advocacy has made it more personal and that much stronger of a decision.

The Diane Story –  I would not have been able to pull off this year’s Blogging for Endometriosis Awareness campaign without the help of Diane! She is a huge advocate for endometriosis awareness as well as chronic illness awareness in general. She has a strong faith and shares a passion to find a way to glorify God in spite of illness!

If you were asked to pick two bloggers to be recognized for their efforts to raise awareness and advocate for chronic illness, who would you name?