Endometriosis Made Real
I was diagnosed with Endometriosis in March of 2014. I have been dealing with the pain since I was 13. I have been ignored by doctors and the pain has been down played by family and friends. It has been hell to say the least. But I am here to tell you it doesn't have to be that way. I hope my battle and story helps you or your loved one understand this disease a little more or give you comfort in knowing there are other people just like you! I will forever fight in the battle to END ENDO!
Monday, August 8, 2016
Broken Dreams
So off to college I go. I start studying music education and vocal performance immediately when I get there. I was taking a full load of general education classes and my music classes on top of it. Most days I was singing about six to eight hours a day. Come to find out my vocal chords can't handle that much singing, they are too tight and actually bang against each other as I talk and sing. I ended up developing vocal nodules in my second year of college. I had to drop my music degree because there would be no way for me to have the nodules and continue singing. Dream two broken.
I go on to meet my amazing husband and have three beautiful kids. If you have read my posts prior to this you know that I have suffered with horrifically painful periods since I was 12 years old. Some how God blessed me with three beautiful kiddos here on earth and two babies that I never held. I wanted to be a mom my whole life. I was going to be on of those PTA president, soccer and van-pooling mom's. I imagined I would be involved as much as I could in my kids lives (until they were too cool for me) and my husband and I would take them on tons of adventures and experiences. Little did I know that this horrible terror of Endometriosis would be the next thing in my life to crush my dreams. I have to pay attention to how much I do and when I do them so I can save energy to go do things with my kids. There are times I miss out on going places with them or seeing them do something because I am laid up on the couch in more pain than people can imagine. This is not how I imagined my life. I hate that I don't get to be the wife that I always wanted to be. Endometriosis gets in the way of so much of a romantic relationship. From the pain, the chronic fatigue, the don't touch me feelings to the depression, this isn't what I dreamed being a wife looked like. Dreams three and four broken.
I don't understand why my big dreams in life keep getting broken for one thing or another. I don't understand what I did or didn't do to deserve it. But I do know other dreams, that I didn't even know existed are coming true. I have learned how to say no to people and to doing things for others all the time. My kids are growing up to be some of the most sympathetic, compassionate and caring people I know. And I am trying to learn not to feel guilty for not being able to do everything all the time. Yes, it is still hard to know how many dreams where broken and not know why or how that changed the outcome in my life but it is good to know that I will get through all of this and that my kids and husband will be by my side fighting right along with me!
Tuesday, March 8, 2016
My 22 year long battle with Endo
Monday, December 28, 2015
A Time to Grieve
I went to the neurologist today after having ran a few different tests, guess what, they all came back normal. So guess what they blame all my symptoms on endometriosis, fibromyalgia and stress. She told me I need to reduce stress and get the other two under control. HAHAHA does she not understand that. Oh and she told me that I know where to find her if I need to see her again. Another write off from another doctor.
So I sat down today and had another good cry. If a friend ever made me cry as much as this chronic disease does I would totally kick them to the curb. It isn't fair how endometriosis takes over my entire body and causes so many different issues and no doctor will help you out. If I wanted to see a specialist I would have to fly to another state to even get treatment. It isn't fair how this disease robs you of being the mom you dreamed of being to the children that you were so blessed to have. It isn't fair how this disease climbs into bed between my husband and I. It isn't fair how doctors write you off because there is nothing else they can see in the tests they are running. If anyone else treated me like this they would be so gone, I wouldn't even think twice about it. Unfortunately this isn't someone on the outside, this is a nasty, chronic, benign, attacking, eating disease that is taking over my insides and my life. I don't get to have a surgery to remove it all, can you go outside and get rid of all the dandelions in your yard and never have another one grow. I don't even get to take a pill or a hundred to make it go away. There is nothing to do but live with this.
I try my damnedest to not let this win. I am taking control of my life to the best of my ability. I have started a different diet that helps reduce inflammation (no I didn't give up snickers!!!), heal my gut and reduce the amount of crap food that goes in my mouth. I have started religious use of my essential oils. I have upped my vitamins that I am taking! Exercise is next on my list. I have started using CBD . And I have started working on a new passion in life. I am doing what I can but it still doesn't fix any of this, I am just hoping I can create a better version of what this looks like.
I have to remember being sad and upset about this disease is ok. I had big dreams of what my life would look like, yoga pants, sweatshirts, ponytails and heating pads were not part of it!!! I need to recreate a new dream and new ambitions. I have to remember my struggles and pain does not define me my strength and hope does. It will take time as I bury my original mental dream board but it will happen somehow. I will continue to fight and advocate for those around me. I just keep praying my daughters and other daughters never have to go through this living hell.
Friday, November 6, 2015
Being Healed
In the Bible there are many stories of just touching Jesus to be healed. There are many stories that Jesus actually blessed the people and they were healed. A few months ago my pastor did a sermon series on the healing that happened in the Bible. I couldn't help but sit there and be jealous. As I sit here every day suffering in pain for a multitude of aliments, I would give anything for Jesus to walk down the street and just brush me with his cloak. In Mark 5:28, Mark tells the story of the bleeding woman. At this point, we all assume she was menstruating. She had been bleeding for 12 years. It talks about how she had suffered a great deal in dealing with doctors. THIS IS ME!!! Ok I didn't bleed for 12 years straight but holy cow could any story in the Bible reflect my life more totally. This unnamed woman basically snuck up on Jesus and touched his cloak and stopped bleeding and felt her body freed from suffering. I can only think she must have had fibroids, adenomyosis, or endometriosis. Something was not right with her body and the doctors couldn't figure it out. Gotta love that invisible diseases stumped doctors hundreds of years ago also
Where is my modern day Jesus moment? What I wouldn't give to be able to go somewhere, touch something and feel better!!! This unfortunately isn't the reality when dealing with this stupid disease. There is no miracle cure. There is nothing that will heal any of this, it is dealing with it every day and trying to make the best out of each day.
I had told my pastors wife about this jealousy I felt about these passages. She told me she had never even thought of it like that and what a powerful image that displays. Yesterday when I saw her, she said I wish I could just touch you and you would be healed. What an amazing thought, I wish that would work!!!! As we were talking about all that is going on she also said to me I bet that you can't wait to get to heaven then, you will just be free of all this pain and suffering. WOW, YES!!! I am not ready to go tomorrow but I can't wait for the day that I get to have a "body" healed from all of this pain and discomfort. But for now I just sit here and pray for some relief and some direction in this huge tangled web.
Sunday, September 20, 2015
From the mouth of my BABE!
Wednesday, September 9, 2015
My Prayer Every Day
Every time I sit to write a blog, it is my prayer that this will reach someone that needs to hear it, whether that person is suffering like I am or is in a relationship of any kind with a person that is going through this also. I am doing all of this to raise awareness for Endometriosis, all disorders that go hand in hand with it and for chronic pain and illness sufferers also.
I am involved in many ways besides just the blog in the hopes of shedding light on a disease that isn't talked about and very much shunned in the medical community. Steffenie Robinson has been so gracious to allow me to join forces with her, in raising awareness in mainly Oregon but everywhere we can!!!
This year (yes I call a year the same as the schools) my focus is getting a program called EMPOWR off the ground here in Oregon. It is a program that the Endometriosis Foundation of America has created. We are looking for mainly high schools to allow a virtual presentation of a program designed to educate and empower our youth to have a voice in their health care and to also know the warning signs that something in their body isn't right. If you are a teacher, school nurse or have a group that would be interested let me know. We can do the program anywhere that has internet capabilities.
Another project I am working on is joining forces with Cause and Event. This is a walk that they do annually. Any non profit organization can join with them on their 5k walk. So EndoWomen of Oregon has joined in with them in effort to raise money for research at the Endometriosis Foundation of America. We have a handful of walkers right now that are registered. If you would like to find out more info you can check it all out here. We are looking for walkers locally and virtually. Also we are accepting donations to be sent to EFA. Our goal is to raise $2000 for the EFA and we are on way to that goal!
These are just a few ways I am working to raise awareness for the disease that has twisted and turned my life upside down. How can you help? What can you do to make a difference?
Wednesday, September 2, 2015
I am not the mom, I want to be
I am not the mom who sits on the floor and plays Barbies with them. I am not the mom who builds Lego castles. I am not the mom who sits and plays board games. I am not the mom who goes on every field trip with them. I am not the mom who volunteers in the classroom. I am not the mom who gets dressed to take them to school or to pick them up. Yes I live three blocks from the school and I drive nearly every time! I am not the mom who takes my kids to the park. I am not the mom who has my kids in a million activities. I am not the mom who has a clean kitchen every night. I am not the mom who makes dinner every night, sometimes take out is my best friend.
I am the mom that wears my hair thrown up in a pony tail. I am the mom who shows up any where wearing yoga pants. I will show up to school wearing no make up and looking like I just rolled out of bed. I have read all these articles about "those" types of moms. "You should pull yourself together!" "You should care what you look like." Really? Do you understand if I take a shower, some days that means I have to take a two hour nap afterwards? If I make myself "presentable" now I don't get to play with my kids when they get home? So it's a daily choice for me of which battle to fight.
I am not the mom I set out to be 12 years ago. I have failed miserably. I don't get to take them to every event. I don't have the energy to make dinner every night. I am the mom who let's my kids eat more quesadillas and hot dogs than any person should. It's all I can do to get by some days. My house is a mess. My kids have lots of chores and I am a stay at home mom. It's not what this was supposed to look like.
Luckily, I have an amazing husband who plays chess with our kids. They have a daddy who plays board games with them. They have a daddy who coaches the soccer team. They have a daddy that will wrestle with them. They have a daddy that picks up where mommy lacks.
I am a mom with chronic pain. I am a mom with a list of non curable diseases. I am a mom who has doctors look at me and say "hmmm, i dont know come back in three months." I am a mom that lays on the couch or in my bed often. I am a mom that can't drive sometimes because I had to break down and take narcotics to get through the pain. I am the mom who sees doctors more often than I have coffee dates. I am the mom who forgets tons of things because of "chronic pain brain fog." I am the mom who struggles day in and day out to find the balance of what I need to do versus what my body can handle.
But I am the mom who has more independent kids because of all of this. I am the mom who has purely passionate and caring kids. I am the mom who has three kids that can all at least make quesadillas in the microwave. I am the mom who has kids that look out for each other. I am the mom that gets more snuggles than most moms ever do. I am the mom who truly believes I am raising better kids because of my chronic illness. I am the mom who loves her children more than they will ever know. I am the mom that will fight everything for her kids. But they are the ones saving my life every day. They are the reason I get up. They are the reason I keep fighting. They are MY reason!