chronic illness

30 Things About My Invisible Illness You May Not Know – 2015 Edition

Invisible Illness Awareness Week - 30 Things About My Invisible Illness

 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: endometriosis, fibromyalgia, chronic migraines, celiac disease, vulvadynia, orthostatic postural hypotension, adhesion related disorders, chronic pain, chronic fatigue, gastroparesis

2. I was diagnosed with it in the year: I received my first diagnosis in 2003. They kind of snowballed from there!

3. But I had symptoms since: 2003. I got really, really lucky. I had an amazing doctor that had just moved to town that I was referred to when my primary care doctor decided that I had a “female problem.” By the time my pain started to significantly impact daily life, I had surgery and was officially diagnosed within three months. The average length of time it takes to be diagnosed with endo is roughly 7 years.

4. The biggest adjustment I’ve had to make is: Leaving the workforce and pursuing disability. It was honestly the hardest decision I ever made. I felt like such a failure. I had worked my butt off to get my Master’s degree (sometimes working two jobs) to become a hospital chaplain and I loved it. Absolutely loved it but my body didn’t so I tried to stick it out in the job I had been working throughout grad school but it got to the point where I could barely function. I am still in the disability process and my quality of life has continued to declined but at least I have more time with my family.

5. Most people assume: That now that I am not working, my life is a piece of cake and I lay around eating bonbons all day.

6. The hardest part about mornings are: Getting my joints moving! I feel like the Tin Man without his oil can most mornings (especially in cool or rainy weather)

7. My favorite medical TV show is: Untold Stories of the ER (as a chaplain I spent a lot of time in the ER and you wouldn’t believe some of the crazy stuff that takes place in there!)

8. A gadget I couldn’t live without is: My tablet – it helps keep me connected with the outside world but can be easier on the hands than a laptop

9. The hardest part about nights are: Getting comfortable temperature wise! Many nights, I need my heated blanket for my joint pain or allodynia but I also get terrible night sweats so I end up sleeping in the least amount of clothes possible to make being able to tolerate the heated throw possible.

10. Each day I take __ pills & vitamins. (No comments, please) Somewhere between 15-18

11. Regarding alternative treatments I: have tried just about everything under the sun. Physical therapy, chiropractors, herbs, dietary changes, etc.

12. If I had to choose between an invisible illness or visible I would choose: My illness is becoming more and more visible as I have had to start using mobility aids more frequently and this summer I decided “what the heck” and started wearing a two piece bathing suit to the pool and the beach, so I’ve gotten a lot of strange stares and whispers. Add in the purple hair and our transracial family, we’ve grown accustomed to it.

13. Regarding working and career: I’m in the final stages of the disability process (I actually have my hearing date! Hallelujah!) but I am also coming to a place where I am redefining what career means to my life personally and how I want this blog to function and where I want it to go in the future so I’ve got a lot rolling around in my brain on that one.

14. People would be surprised to know: That I still love to ride roller coasters. I cannot ride them as many times in a row as I used to but there is nothing better than a good coaster!

15. The hardest thing to accept about my new reality has been: Learning to say no and learning how to be more flexible in scheduling. I am a creature that thrives in structure with a plan and lists in hand and I have always had a people-pleaser, “almost type A” personality so letting go of that and most importantly learning that letting go of that is not equivalent to failure has been a hard hurdle to climb over.

16. Something I never thought I could do with my illness that I did was: Meet so many amazing people all over the world. I have developed some of the most deep and meaningful relationships in my life after being diagnosed and being a part of various support groups or activist groups. My life has been truly changed by some of the amazing people I have met (including all of you guys!).

17. The commercials about my illness: make me want to scream. No one wants to have a happy period. I don’t care if you have endo or not. You do not want to go down a water slide or turn flips off a diving board in a white bikini when Aunt Flo arrives for her monthly visit. Get real.

18. Something I really miss doing since I was diagnosed is: running. I miss being able to lace up my sneakers and pounding the pavement for a couple miles. I got the best thinking and praying done that way. Maybe I can find a way to ease into doing a little running. I may not be able to go back to 5-8 miles but maybe I can shoot for 1 or 2.

19. It was really hard to have to give up: Gluten. Well, it has gotten easier over time and even living in a tiny town, there are now so many more gluten-free options available so its not a big of a change as it would have been if I had been diagnosed even ten years ago. I just really miss Krispy Kreme donuts, Wendy’s Spicy Chicken Sandwich, and Pizza Hut breadsticks.

20. A new hobby I have taken up since my diagnosis is: Blogging/writing. I always liked writing and was rather good at it but I never thought that I would be pursuing it as a career and even considering writing a book!

21. If I could have one day of feeling normal again I would: Eat a lot of gluten and head to Cedar Point and ride as many roller coaster as possible.

22. My illness has taught me: That I am a total badass and so much stronger that I ever thought I could be. I also learned that Jesus is a total badass and the depths of his love, mercy, grace, peace, comfort, wisdom, and fight surpass all understanding.

23. Want to know a secret? One thing people say that gets under my skin is: “I heard about this juice/supplement . . . . ”

24. But I love it when people: “How can I pray for you?”

25. My favorite motto, scripture, quote that gets me through tough times is: “When darkness comes, I’ll light the night with stars” ~ Skillet, “Whispers In The Dark” and “They can’t keep their chains on me when the Truth has set me free” ~ Skillet, “Not Gonna Die”

26. When someone is diagnosed I’d like to tell them: That I am sorry, that I will be praying for them, and how much I recommend researching and finding a support group to be a part of.It makes an absolute world of difference to feel like you have a place where you belong with people who can actually say “I understand” and mean it.

27. Something that has surprised me about living with an illness is: How much stronger it has made my faith. I had to do a lot of wrestling but it was through that at wrestling that I truly discovered not only what I believed but why I believed it. It was through the hardship that God’s character was revealed to me in such a deep and meaningful way and I wouldn’t trade that for anything.

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband and mom have spent so, so many nights in those hellish hospital chairs to make sure that I have never had to spent the night alone in the hospital even when I told them I would be ok and encouraged them to go home. My dad always researches the best gluten-free places to eat whenever we travel somewhere and always secretly (or not so secretly) researches any new diagnoses or treatments to make sure I have the best care possible. I may be almost in my mid-30s (YIKES) but I always feel like I’m still my parents baby girl and my husband makes me feel so safe and protected.

29. I’m involved with Invisible Illness Week because: every voice matters. It is crucial for awareness, education, and resources to be shared about invisible illnesses that are affecting millions of lives worldwide and every single voice makes a difference.

30. The fact that you read this list makes me feel: like a part of something special.

 

INVISIBLE-ILLNESS-AWARENESS-WEEK-2015

 

This post is written in celebration of the 2015 Invisible Illness Awareness Week. You can also check out my 30 Things You May Not Know About My Invisible Illness post from the 2013 Invisible Illness Awareness Week.

chronic illness

My Battle Cry (& Giveaway!): Speaking Out For Endometriosis Awareness

Blogging For Endometriosis

 

I cannot believe that Blogging For Endometriosis Awareness 2015 campaign is over! The month blew by! I hope you have enjoyed the posts of this year’s campaign and I most definitely invite you to mark your calendars for next year’s campaign! I am really hoping to make a monthly Blogging for Endometriosis linkup so I will keep you updated with the details!

This week’s theme is: My Battle Cry: what message are you determined share with every breath that is within you to make sure the world knows the truth about endometriosis?

As I have mentioned, I love, love, love Skillet (my next tattoo will definitely be Skillet inspired). We are a total panhead family! Their song “Sick Of It” inspired this year’s theme and their song “Battle Cry” inspired this week’s theme!

You’re on the edge of giving up
You know I feel it too
You won’t be alone because
I’m with you
Bring the fire, bring the smoke, bring the rain
We will bend but we will never break

I cannot put into words how important it is to find a support community after being diagnosed with endometriosis or any chronic illness. I was lucky enough to find GirlTalk, which was a support group for ladies with endometriosis that were under 25. That group of ladies saved me in many ways. I loved that I was able to serve as the program director for several years. It is so important to know that you are not alone and have a group of people that can support you during the tough times.

It seems like no one knows
How you’ve been feeling
You’re hiding all your hopes
You stopped believing
It’s not over, we’re one step away
We will bend but we will never break

One of the other messages I want to be heard is to make your voice heard. Chronic illness is a big deal and not nearly enough is being done to correct the problem but together we can raise our voices to make a change. Together we can choose hope and make a difference.

I believe we can’t lose
Even mountains will move
It’s my faith, it’s my life
This is our battle cry
They can’t take us down
If we stand our ground
If we live, if we die
We will shout out our battle cry

Two messages that I will speak until my dying breath are 1) God’s grace and love will change your life and with it everything is possible; and 2) Endometriosis and other invisible illnesses are serious problems and more needs to be done to find long-term treatments. Education and awareness are extremely important and together we can shout our battle cry and fight for change!

Let it rise like a prayer in the night
Shout for love, shout for hope
Let them hear us

Together we can make a difference and share the love, hope, and passion in our hearts with the world!

What is your battle cry?

 

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It is time for the final giveaway! Congratulations to last week’s winners Cheryl, Shelley, and Nikki! You should have received an email from me so let me know if you did not receive it!

This week’s giveaway is sponsored by Seaview Jewellery and FJJ Creations! Today’s giveaway will also have 3 winners! The prizes are a beautiful endometriosis awareness keychain created by FJJ Creations and a beautiful necklace and charm both created by Seaview Jewellery! Just like last week, be sure to click over at Diane’s blog for more opportunities to win awesome prizes from Seaview Jewellery, FJJ Creations and Tabetha’s Creations!

Blogging For Endometriosis Giveaway

This week’s giveaway will run until Saturday, April 4th and 3 winners will be chosen!

To enter:

1) Leave a comment telling me about your battle cry.What message are you determined share with every breath that is within you to make sure the world knows the truth about endometriosis (or another issue important to you)? (mandatory)

2) Tweet about this post and giveaway and then leave me a 2nd comment letting me know you did & include the link to your tweet!

 

I hope your week is off to a fantastic start! Remember to take a stand this week because we’re sick of this!

chronic illness

Changing The Stigma Of Endometriosis

Endometriosis-Awareness-Awareness

 

Its hard to believe that March is half over and Endometriosis Awareness Month will soon be winding down. It has done my heart good to see my Facebook feed turn yellow and see a steady stream of endometriosis awareness posts, educational articles, and resources shared so frequently. It almost me sad to think that is going to change.

I would love to see endo awareness become more of a year round thing. I obviously know that for many of us it is. I mostly definitely want Blogging For Endometriosis Awareness to become a year round campaign. I would love to have monthly linkups. Thoughts?

The theme for this week’s post is, “If I could change one thing about the stigma of endometriosis, it would be . . .”

I would love to change the stigma that endometriosis is a “female problem.” Granted it is a disease where the lining of the uterus grows elsewhere in the abdominal cavity and elsewhere in the body so it is obviously an issue that most predominantly affects women but somehow the stigma that its a “female problem” or a “female issue” makes it more taboo to discuss.

No one wants to talk about periods, bleeding, bloating, painful sex, and things sticking where things aren’t supposed to be stuck.

Endometriosis is not bad cramps, PMS, or crappy coping skills.

Endometriosis is a serious disease that can cause chronic and crippling pain. It often takes YEARS to receive a proper diagnosis (source).

Endometriosis is a major source of female infertility. A staggering 30-50% of infertile women have endometriosis (source).

Endometriosis often results in premature hysterectomies which often do not provide long term relief. Hysterectomies are the second leading surgery for premenopausal women (following c-sections) and a large portion of these procedures happen as a result of endometriosis (source).

In a survey conducted on the long term effects of endometriosis, 51% of the women surveyed stated that endo has affected their work and 50% stated that it has had a profound impact on their relationships (source).

These examples are just a small sampling of how greatly a woman’s life is impacted by endometriosis. I honestly believe that if endometriosis affected men in the same ways as it affects women, there would be far greater advancements in research and treatment options but because it is still considered just a “female problem” by so many, resources are limited.

I would love to see this stigma changed. It is by our efforts to raise awareness, support, and, most importantly, education about the disease that we can have a hand in changing it.

 

 

I am excited to announce that this week’s linkup post also includes a giveaway! One of our business sponsors, Seaview Jewellery, has graciously donated a beautiful necklace and charms to give away to you awesome folks! The charms can be put on a keychain or zipper pull as well as a variety of other places. This week there will be 3 winners (one will win the necklace and two others will win charms). Look at these beautiful creations:
Seaview Jewellery Endometriosis Awareness Jewelry

 

To enter the giveaway, leave a comment telling me what stigma about endometriosis (or chronic illness in general) that you would like to see changed (mandatory)!

For an extra entry, tweet this post and then leave a comment letting me know that you did with a link to your tweet!

This giveaway will run through Friday, March 27th! You can also visit Diane’s blog for additional giveaways courtesy of Seaview Jewellery! Next week’s linkup will also feature endometriosis awareness jewelry giveaways courtesy of Seaview and our other business sponsor FJJ Creations!

 

P.S. Don’t forget to link up your post this week!