chronic illness

Stalemate: When Life With Chronic Illness Gets Put On Hold

Stalemate: When Life With Chronic Illness Gets Put On Hold

There comes a point in your life with chronic illness where you feel like you are going no where. There are opinions. LOTS of opinions but no where to go. No way to move forward. I’m not a huge chess player but I can’t help but think of this point in my life as a stalemate.

Definion of Stalemate (per Merriam Webster):

: a contest, dispute, competition, etc., in which neither side can gain an advantage or win

: a situation in chess in which a player cannot successfully move any of the pieces and neither player can win

This is honestly where I feel like I am in my life. I have a team of doctors (neurologist, rheumatologist, gynecologist, gastroenterologist, pain management specialist, and general surgeon) and at this point it feels like they are all just pointing fingers at who should be in charge of what. Honestly, it feels like they are just pointing fingers at whose fault it is. The one thing they all agree on is that I am in need of surgery but I am considered too high risk to go in preemptively so they just want to wait until something goes wrong (another total bowel obstruction is the most likely).

There is nothing worse than waiting.

I am currently waiting for our Disney vacation (123 days to go!) which is gut wrenching because I love Disney so much but at least I know at the end of 123 days, I will be on a plane headed south to visit The Mouse and have a week full of fun and family.

When you are waiting for something to go wrong, there is nothing exciting about that. My first total bowel obstruction experience was scary enough without knowing that it was coming and of course, the life changing experience I had in February, I never want to go through again. So right now, I have no idea what to expect.

We are at a stalemate. I feel like there is no win in this situation.

We have known for sometime that adhesions have been affecting my bowel but recently, I have been having a lot of issues with my bladder. The pain can take my breath away. I did see my PCP and I do not have a bladder infection or UTI so those are two causes crossed off this list. Two of concerns at the top of my list are bladder prolapse (which is common post-hysterectomy and I have a family history) or the adhesions have spread and now my bladder is involved. I’m not sure which one would be better.

I see my endo doctor June 8th and part of me wants to get on my knees and beg that she does surgery. Risks be darned but I need my life back. I know I will always have a life with chronic illness but there needs to also be a quality of life.

I NEED A LIFE.

MY LIFE.

Am I absolutely crazy to beg for a surgery? I know the risks. There are a lot of them. I am not going to play that down. But at what point do the possible benefits from surgery outweigh the risks?

The last general surgery I saw said that the chances of anyone ever being able to do anything laparoscopically are slime because of scar tissue. She said that by just by feeling my scar from my vertical obstruction incision (which honestly feels like a rope) that any adhesions would likely be dense. When I have my gallbladder removed last summer, they could not even use my belly button for the laparoscope because it has been used too many times. My poor belly button.

Maybe we’ll get lucky. Miracles happen right?

All I know is that something has to give. Something has to change. We know there is a problem and I’m tired of feeling like a ticking time bomb. I’m tired of constantly being at a stalemate. Its time to make a move.

Have you ever felt like you were at a stalemate? Who made the first move?

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!

bloggingchronic illness

Strength In Numbers: What Endometriosis Has Taught Me About What It Means To Be Strong

Strength In Numbers: What Endometriosis Has Taught Me About What I Means To Be Strong

In the almost 8 years of blogging (EIGHT!), I have written many times about how endometriosis and chronic illness has changed my life for the better and for the worse. I have learned not to take anything for granted. I have learned that I am much stronger than I could have ever given myself credit for. I have learned the importance of being your own advocate and I have learned to trust my gut instincts and to trust my heart.

I have written about all of these in posts and letters time and time again but one thing I haven’t addressed is how endometriosis has made me stronger because it has made me a part of a team.

I have always been independent and even a little bossy depending on who you ask. I am also an introvert to the core. I can be social if necessary but I am more relaxed in intimate gatherings and thrive in solitude.

In a way, this works rather well with chronic illness since I don’t get out and about like I used to so I don’t feel trapped and start climbing the walls.

But . . .

I also know that I cannot do this alone.

When I was in seminary, we had to take a class on death and dying. Sounds like a really fun class doesn’t it? In class there was a little quiz that we had to take that judged what we feared most about the dying process and death, such as the afterlife, burial vs cremation, the physical process, etc. What I feared the most was losing my independence. I cringed at the though of being totally dependent on someone else and not being able to do things on my own.

Since being diagnosed and in the years since, I have had to face that fear. I am not completely dependent on someone else at this stage (even though there have been some periods of time in which I have had to be) but there are many things that I have had to come to terms with.

I hated asking for help.

I hated saying no.

I had to be on top.

I had to be in charge.

I had to have the A.

I had to be perfect.

I mean I knew perfect was impossible but I had to be as close to perfection as possible and the only way I could achieve that was by depending on what I could control.

ME.

I thought asking for help, saying no, or not having the full approval (imagined or not) meant that I was weak.

I was wrong.

Obviously that doesn’t work at any point in life. Sick or not. Striving for perfection only sets you up for failure and heartbreak. It also causes havoc in your relationships. It also creates an upside down picture of God’s love and His grace.

It took me awhile to get it through my thick, hard-headed self but I learned that my strength doesn’t come from me.

Yes, I am strong, confident (sometimes), and determined but my strength comes from God’s love, grace, and mercy and from there my strength filters throughout all aspects of my life.

Coming to this realization has helped me in my marriage by accepting my husband’s help and allowing myself to be completely vulnerable. And also allowing him to be my advocate when I cannot advocate for myself.

Coming to this realization has helped me have more real and authentic relationships with family and friends.

Coming to this realization has helped me understand the importance of taking on chronic illness head on as a team. As much as I would love to be able to cure this beast on my own and have women everywhere be free of pain worldwide, we need each other.

Endometriosis has taught me the important of being a team. It has taught me the importance of campaigns such as Blogging for Endometriosis Awareness, Her Yellow Ribbon, and the Endometriosis Research Center to make an impact on the world to spread awareness, education, resources, and support.

I have learned the importance of activism across all types of illness as bringing awareness and research for one is a win for all. Organizations like WeGo Health work alongside organizations and activists of all causes and while Blogging for Endometriosis hits its major stride in March during Endometriosis Awareness Month, we work behind the scenes all year teaming with groups like WeGo Health and hopefully we can work to make BFE a year long drive to fight for not only endometriosis but all invisible illnesses.

Endometriosis has taught me that as a team we are strong and we are unstoppable.

Blogging For Endometriosis Awareness