Learning to smile

Today something happened that made me really think and appreciate what has been given to me. When living with endometriosis it is so easy to lose sight of what I am thankful for. It is easy to see all the things that I can't do and what endo has taken from me. I sit and feel guilty for not being able to clean my house the way I should, be affectionate with my husband, or even go to the store and walk around. I forget that there are many things in life that I can be happy about, even when I am hurting. 

So my husband and I were heading to Walmart, to get some groceries, and he said he was so happy to finally see a smile on my face again. It kind of hit me hard, like when you are punched in the gut and can't catch your breath. I realized in that moment, and I think even more as I am writing this, that I had let the Endo take away my joy. I used to make jokes, the kind of jokes that made normal conversation into something a little raunchy. I used to smile so big my cheeks would hurt. I grew up in not the best of circumstances and so I appreciate all of the little things. I am easily amused and it doesn't take much to thrill the life out of me. Somewhere I have forgotten to continue to be me. 

My husband has been the best thing that has ever happened to me. He does everything in his power to make me feel special, important, and loved. No one in my life has ever been so selfless when it comes to me. He puts me first and he is so understanding and kind when it comes to living with a wife that is so ill. 

I am soon going to be having a hysterectomy and having both ovaries removed, and he knows how much I am struggling with it. He knows I make jokes and when I am hurting I tell him that it can't get done fast enough, but I am having a hard time with the fact that I can't make him a daddy. We have a truck that is getting up there in miles and fter my surgery in April we had to travel 3 hours home in the truck and it hurt so bad. He kept apologizing for every bump he hit, and looked at me with such concern, it made me feel so bad for putting him through that. So, he came up with a solution, and he bought me a car. It is a 2011 Hyundai Sonata GLS and has so many bells and whistles, that I am giddy every time I figure something else out. On the way to get groceries he was happy because he had figured out a way to make me smile over and over again. He had figured out a way to make trips to the grocery store, to visit family, and trips to the doctor more comfortable. He got to see me smiling instead of crying and that brought him such joy. 

When we arrived home, we put away the groceries, and started cooking dinner. I told him thank you for everything that he does for me. I also apologized for not being a better wife and costing him so much money in the process. I told him that I feel so bad that I can't repay him for all he does for me. His response was exceptionally sweet. He told me that I do a lot and that I make him happy and that is enough for him. He asked me if he is understanding enough. I almost fell apart, but I held it together and told him that he was beyond understanding. My husband grabbed me and kissed me with such passion. He told me, without saying a word, how much he loves and appreciates me. He made me feel so special and loved.

I grew up thinking that I wasn't worth loving or sticking around for. I thought that there was something wrong with me, and I was told that regularly. I didn't know that someone could love me the way that I love them. I didn't know that sense of security or feeling like there was no better place than home. I truly didn't know that someone could love me just the way I am or that unconditional love truly existed. Today it was driven home how much I know, understand and feel all of those things. With a few simple words spoken by the person that has taught me so much, I realized that the endometriosis was taking more than it deserves. My husband deserves a wife that smiles, laughs, and makes him giggle when I twist what he says. 😊 He deserves a wife that finds reasons to smile, even on the days that I feel like doing anything but. I may not be able to do all the things I want for him, but I can learn to not let the endometriosis take away the things that make him so happy. 

Living with this illness is more than just trying at times. It can make me feel like there is no end to the pain and that there is not much more than I can take. It has taken my ability to have my husbands child, but I can't let it take away the relationship that I have waited my whole life for. I can't continue to let it take away the person that he fell for. In the year to come I am going to do my very best to show my husband that he gives me plenty of reasons to smile. I don't smile because he buys me things, I smile because he does everything in his power to help me live with endo. He tries his best to help me deal with the pain and figure out ways to ease it. I smile because he makes me feel like I am loved and wanted and there is no other feeling like that in the world. I smile because he has given me a place that truly is a home. I smile because he fights endometriosis right along beside me, hand in hand. I smile because he loves me enough to want to make me smile. 

I have a goal to not let the endo take away anymore than it already has. I won't let it continue to take away who I am. I will fight to raise awareness, to show my support, and to smile more often. I wish that everyone could be as blessed as I have been. As much as the endometriosis has taken, it has given me a lot too. I have been given a man that truly loves me and many sisters that support and understand me. I will look for the things that this illness has given me instead of focusing on what it has taken away. I hope that my endosisters and their friends and family can join me in matching this goal.💛   

 millionwomenmarch2014.org  dkbcrochetworks.com

Blogging For Endo: The Mental Impact #myendomarch

Living with endometriosis takes a toll in more ways than one. The physical aspects not only affect your physical well being, but it takes a toll on your mental well being as well. I know that I apologize nearly everyday for being a poor wife. I get really depressed because my husband has to pick up so much of the slack. Now mind you, it is slack that he wouldn't have to pick up,if it weren't for me having endometriosis. I feel so guilty that I am so "lazy", though I know that laziness is not the issue. If I could get up and do the laundry, dishes, or vaccuum, I would do it in a heartbeat. Knowing the truth, or the reality, doesn't make it any easier to comprehend or cope with. 

I have been diagnosed with severe anxiety. I know that my endo has something to do with that diagnosis because when you live in such severe pain, it is hard to stay mentally stable. I worry about everything. It is hard to control random thoughts and cope with the consequences of those thoughts. It is extremely hard to make a plan, and stick to it, because every time you make a plan, endo has a different plan set for the day. 

The lack of sleep can also take a toll on your mental well being. I know that I have a really hard time going to sleep. If it isn't the pain keeping me up, it is the thoughts of all the things that I need to get accomplished. Without sleep, your body and mind can't reboot. It slows your thought processes and makes it hard to concentrate. I may not be able to keep my mind on one crochet project at a time, so I do several to keep myself from getting so frustrated. 

The feelings of guilt, loneliness, laziness, pain, and frustration at the situation, takes a toll on all of us. We all have those times that we feel alone and like we can't handle what is being fed to us. We all suffer times of weakness and mental breakdown. We have to remember that we are not alone, no matter how much we feel like we are. We are doing the best that we can, though we feel like we don't get much accomplished. We shouldn't feel guilty for having an illness that takes so much away from us, though I know that is easier said than done. We need to give ourselves a little bit of a break when we are frustrated. Living with endometriosis is not easy, fun, or even bearable most days. We are going to react to our situation and take it out on the people around us. As long as you can catch yourself when reacting to life and apologize for being a "witch", than the people that love you will understand. We all have moments of weakness and that is fine, because we fight like girls! The fight is an everyday battle and no onoe can battle everyday with out a slip or two. 

The mental toll that endometriosis can take on us and our families is almost as significant as the illness itself. We are all strong and we have each other to lean on. We CAN fight this and we WILL prevail one day. When you feel like falling apart, remember you are not alone. Remember that there is someone else out there that is going through the same thing you are and will understand. I remeber that the search for a cure is on going and that is what helps me on the days that I feel like endo is getting the best of me. We will get there one day. 

The #EndoMarch2014 will help us get there! Please remember to go to their website and help us spread awareness about endometriosis. www.millionwomenmarch2014.org 

             

EndoMarch2014

There is a movement to raise awareness about endometriosis and other chronic pelvic issues, on March 13, 2013 all around the world. I am so excited to help spread the word about the EndoMarch2014! The goals of the march are all areas that need attention when it comes to this illness. I will lay out my understanding of the goals and what I think of each one.

The Endo March wants to unite women that suffer from endometriosis and their families and friends. We all know that living with this illness can be trying, to put it politely, at times. As hard as it is for us to live with and through, it can be just as hard for those that love us to watch. The march wants to make sure that we can all meet and find the support that we need. I must say that the march is already accomplishing that goal. Since I found out about the EndoMarch, I have found so many #endosisters and I couldn't be happier about that. It is comforting to know that I am not the only one that has the feelings and fears, and that I will find the support that I need when I feel like I am losing the fight. I am thankful to the EndoMarch for providing me with an avenue to meet and befriend other women that are just like me. This is a goal that will definitely help many of us stay the course and keep fighting

Another goal is to give endo sufferers and their friends and family the ability to speak up and out about endometriosis. If it weren't for this march, I would not have met some special women that encouraged me to write a blog. I keep to myself, due to my illness, and haven't had the courage to speak out about the issues that I have, while trying to live life with endometriosis. I have always been made to feel like it was my issue and I shouldn't speak about it. I know many women that have dealt with the same feelings and the EndoMarch has given many of us the confidence and knowledge to know that it is not just in our heads and it is a real disease, that deserves real attention. 

Another goal is to educate more people about endometriosis and the effects that it has on girls of all ages and their friends and families. If we could educate schools, the courts, and people in general, then maybe women wouldn't continue to get disciplined for things that they have no control over. One way to educate more people is to have public service announcements . You see public service announcements about bullying, diabetes, breast cancer, and so much more. Endometriosis affects more women than breast cancer does and yet it doesn't get the same attention. It is said that you can't die from endometriosis, but that is not true, and I think that is worth bringing attention to. The endometriosis alone may not be lethal, but the side effects and complications from having it can be detrimental to a sufferers health. The mental toll that endo can take is known to cause suicidal thoughts and actions. Dealing with endo can also cause severe anxiety in a large amount of sufferers. I suffer from severe anxiety and it plays a definite part in my mental health while trying to live with and understand how to deal with my illness. I think that public service announcements would shed some light on the real difficulties that women have to endure while living with endometriosis. 

The medical community has an amazing lack of education and understanding of endometriosis. I personally have experienced the lack of education and understanding. I went to a female gynecologist, in February of last year, that told me that I was "normal" and that I was having "regular" cramping, just like many other women experience. I had brought my post op report to show her that I had Stage 4 endometriosis, and she still had no sympathy or understanding of what I was going through. She wrote me a year's prescription of Aleve and sent me home. My husband and I discussed the doctor's visit and we were both disgusted at the lack of understanding of what I was going through. I cried because I didn't think that I was going to get the help that I desperately needed. I luckily found a support group that referred me to Dr. John Dulemba, an endometriosis specialist. Come to find out, I was far from normal. I had one big mass of organs in my abdomen, had advanced stage 4 endometriosis, and adenomyosis. If there was more education about endometriosis and its symptoms, then maybe there would be fewer stories like mine and more stories of women getting the help that could save their lives. Along with education of the medical community, the hope is that there will be more dedication to finding a cure. If it is known that so many women suffer from this illness, and the toll that it takes on so many people, then maybe someone with medical knowledge will be motivated to hunt down a cure. There are many medical professionals dedicating their lives to finding a cure for cancer, diabetes, ALS, and so much more. We need more searching for a cure to the illnesses that have been affecting millions of women for far too long. 

The only way to diagnose and treat endometriosis is to have surgery. Surgery is invasive and can cause other complications, including death. There should be other ways to diagnose this illness if nothing else. Another goal of the EndoMarch is to find non-invasive diagnostic tests and improve health screenings for girls and young women in school. There are many chronic pelvic conditions, endometriosis included, that young women hitting puberty suffer from. If these conditions were caught earlier, then these young ladies would have a better chance at leading a more productive and happier life. Treatments could be administered earlier and the solutions could be found that would not impact their lives so drastically. Some of the treatments currently out there for some of the chronic pelvic conditions are just as harmful, if not more harmful, than some of the illnesses themselves. Going with out a proper diagnosis can cause these illnesses to become exacerbated and inflict unnecessary pain and suffering. We all deserve to find help for the illnesses that complicate and interrupt our lives. We deserve the ability to make choices in life and not have our illnesses make them for us. 

There are private and government organizations that can help with funding the search for a cure, non-invasive testing, and public awareness. The National Institutes of Health (NIH), the Department of Health and Human Services (DHHS), The Center for Disease Control (CDC), and the Surgeon General are particular governmental institutes that are crucial to work with. They have the ability to change the way medical professionals, government entities, and the public in general, look at endometriosis and other chronic pelvic issues. If these institutions would start talking about the illnesses, it would open people's eyes and cause more of a change in the way these illnesses are judged and treated. I know when I was in school, I would miss 2-3 days of school every month. Between throwing up, bleeding heavy, hot and cold flashes, and the excruciating pain, there was no way that I could learn, let alone function, at school. Now a days when you miss too much school, you are sent to court and punished for truancy. If people understood more about these chronic illnesses, then we may be able to save young ladies from being punished for being ill. We could find doctors that could help young ladies live a more "normal" and productive life, and not have to miss out on school classes and activities.

It was not my goal in life to be stuck in my home writhing in pain. I didn't sit at home, as a little girl, and wish that I could stay home and be stuck in bed, on the couch, or in the bathroom. It wasn't my goal to feel like less of a person for not being able to clean my house, wash my clothes, or be a good wife to my husband. If there was a real solution out there that would allow me to actually live my life, I would jump on it in a second. It is my belief that the EndoMarch is doing everything that they can to find that solution for me and every other sufferer out there. If I can help in those efforts in any way, I am going to do it. I am not rich, famous, or even known to very many people, but I do have a brain, heart, soul, and voice. One person can help make a difference, but I consider myself one person among millions that are standing up and fighting for something that is long overdue. I am going to do my best to use what little I have to help make the EndoMarch as successful as possible. I need the goals to be met just as bad as every other woman out there that suffers from a debilitating chronic pelvic disease. I have suffered for 20 years with endometriosis and do not know how long I have had adenomyosis. I think that I have suffered long enough and deserve some answers and recognition. Anyone that has suffered for years and been made to believe that they are not deserving of help, should be recognized as being strong, stubborn, and more full of life than most. The EndoMarch has given me a renewed sense of hope and I could not be more grateful. 

Please help us all by checking out the EndoMarch website and read the stories, goals, and information about endometriosis. Help us educate the world and spread the strength and hope of every woman that is fighting like a girl. www.millionwomenmarch2014.org

Our Pleas Are Being Heard

There is something to be said for all the information that is starting to come out about endometriosis. It almost seems like our pleas for help are actually being heard. I am seeing new information being posted everyday. I think that we may just start getting better care. I am looking forward to the EndoMarch2014. It is going to show the world that we are not giving up. We will shout from the rooftops and bang on doors in order to get the treatment we deserve. We suffer like many cancer patients do, yet we don't get the same sympathy or understanding. Our families look at us like we are crazy, or lazy. We are treated like we should get over it, suck it up, take Midol and get to work. If endometriosis were classified as the cancer type illness that it is, then maybe our the insurance company would pay more of our medical costs. We may be able to get on disability, as some of us are in the bathroom or in bed all day. Maybe we would have more effective treatments available to us so that we would have a chance to live a more "normal" life. Just maybe we would have national coverage of Endometriosis Awareness month, the way that everyone covers Breast Cancer Awareness. 

We can only hope that this trend continues. I am seeing more and more studies and news stories on our hidden passenger. As soon as I see them, I share them. I do my best to spread awareness and gain friends everyday for doing so. I love that there are so many of us that are standing up and speaking out. It would be wonderful to be able to attend the Endometriosis March on March 13, 2014. The scarves that I make will be around the necks of many women that are attending and that will have to be good enough for me. The march is just another way to spread awareness and I think that it is another stepping stone in the long path to finding a cure. 

If you would like to learn of all the new information that is beginning to circulate, join Facebook or Twitter and find me. Anytime something is shared, I pass it on. You can learn new things and have better conversations with your endo specialist.

Struggling but Fighting

Days seem to get longer and longer with each passing day. I notice that I am having a harder and harder time dealing with this illness. I have suffered for 20 years and each year it gets worse. If I really think about the progression of the illness, and the pain associated with it, I think I may just give up. The pain is so unbearable now, and next year at this time, I can't even comprehend how I would deal with it. 

I have been in some pretty bad pain for the last few days. I will be starting any day, and my uterus and ovaries are punishing me. My husband says I am stubborn and always try to do too much and end up paying for it later, so he came up with a solution. He went and picked up a slew of movies and sat down and watched them with me. He knew if he was up and doing stuff I would figure out a way to help, or do something else that needed to be done. I know it killed him to sit all day for the last 2 days, but he was content because he knew I wasn't over doing it. So let me actually get back to the point. The movies we rented were apparently scratched and we were missing big chunks of the movie. We only paid half price for the rentals so I told my husband, "I guess we only get to watch the half of the movie we paid for." Of course we both started laughing and I immediately started crying. Laughing hurt so bad that I couldn't hold back the tears. I felt so bad. My husband hates it when I cry because he feels helpless to do anything about it. I usually do everything in my power to be strong. I cry when he isn't there, but every now and then I can't help it. Today it made me so mad. We were having a good time and the pain had to remind me that I couldn't do that today. For just a split second the old me was there. I was light hearted and quick witted. It disappeared as quickly as it had appeared. 

I am struggling with the unknowns. I have been reading a lot of articles about Endo lately and it is a bit discouraging at times. The unknown is what is so scary for me. I had a surgery in April thinking that the outcome would be less pain. Needless to say that wasn't the outcome. My Endo was so much worse than the specialist had thought and therefore the outcome wasn't as predicted. I have severe endometriosis and adenomyosis so the next course of treatment is to have a hysterectomy. The fear I have is that I won't get enough relief from it. The majority of my pain is around my periods and so we think that taking my uterus will take care of the adenomyosis. Taking my ovaries will prevent the endometriomas from growing back on them, and therefore reducing my pain. What if it doesn't work? What am I going to do? I am scared that it is just going to exacerbate another complication from having endometriosis. I am scared that it won't take care of the amount of pain that I need it to. I know that it won't cure the Endo. I know what it won't do, but it is what I don't know that it will do that is scary. 

There are no guarantees when it comes to having surgery to treat this illness. I have an excellent specialist, but he doesn't seem to know much about how to treat the other organs that can be invaded by the endo. He knows how to excise it, but he doesn't do resectioning of the colon, nor does he know how to find it in the colon muscle. I talked to him about the issues that I was having with going to the bathroom and he told me that the only gastro doctor that he knew, in the area, that could identify it in the muscle of the colon, had passed away. He hasn't been able to find another doctor that could. So that essentially told me that if that was an issue, I would have to be able to travel to the CEC, or find another doctor that was closer. 

I am not able to work, other than selling my crochet items, and that doesn't earn us much money. My husband works hard in the oil field as a welder, but he doesn't make the kind of money he should. We aren't at poverty level, but we live paycheck to paycheck most of the time. We have paid off our house and our vehicle, but with medical bills, we can't afford to buy another vehicle. I hate being such a burden to my husband. We can't afford the travel to go to different doctors, or for the hotel stays. Heck, I owe over $100,000 in medical bills just for this year alone. That means that if we didn't pay for gas, groceries, electricity, water, or cell phones, we could pay off the debt over the next three years.

I broke down tonight and told my husband that I was scared. I have been trying to so hard not to burden him more than I already do. I just broke down tonight and couldn't keep it bottled up. I felt helpless and didn't know how to hold it all in. Why does the endo have to take away laughter from me? It seems that it just keeps taking more and more. I am losing pieces of me, bit by bit. There used to be a time where I would crack jokes constantly. I used to twist what people said and make it funny. I don't do that so much any more. I think you have to be happy in order to be funny, and I am just not that happy. My husband does everything in his power to make me smile and keep my spirits up, but sometimes it just isn't enough. I am fighting the depressive feelings that keep creeping in. The best way to fight them is with laughter, and I can't laugh. 

I know I am not alone and that I have plenty of support from my endosisters. I know that things will look better in the next week or so. Until that time comes, I have to fight to stay positive, strong, and light hearted. It is definitely a fight for me. I have been in pain almost all my life. I was physically abused by a step father, raped by a grandfather, and now have severe endo. I really need a break from the pain. I fought people growing up and now I have to fight my own body. I have survived so much brutality and I will survive this too. I have always fought like a girl and I won't give up now.

More Questions Than Answers

I am sure that many of you talk to family and friends about your illness. If you are like me, you come across those friends and family members that ask questions that you don't have an answer for. I have also run into the occasional person that has a "suggestion" that sounds good, though not at all plausible, or the suggestion is completely insane. I have very close friends and a few family members that want to truly know how I am and what is going on with my treatment. As I explain things to them, I am confused myself about this horrid illness and the treatments, or should I say temporary solutions to a few of the complications. 

I was sitting at the table today explaining what the doctor found at my last appointment and the treatment options that were offered. I then had to explain that even though we chose an option that will treat an issue, it won't solve the other complications. The look on my family members face was perplexed. She asked why this wasn't treated like they treat cancer. I didn't have a good answer other than to say it wasn't cancer. She then asked why I couldn't get disability, especially since she has watched my health fade for a few years now. Again, I had no good answer. (My husband and I proceeded to tell her about the March for Endo and what they are trying to get accomplished). She asked some very good questions but she also asked questions that weren't possible. One the questions was why can't they get all the hormones out of your body to starve the Endo? That didn't make sense to me. I understand why she would think that, seeing that I explained that the Endo is progesterone and estrogen, but how can you strip every cell in the human body of those hormones? (That question reminded me of my days working in the ICU. We would have a person that was badly injured and would be brain dead or severely brain damaged and a family member would ask if they could have a brain transplant. Yes you read that right, a brain transplant. I understand where they were coming from. They were losing someone they loved and wanted to find any answers they could to hold onto them. It is still one of those questions that is absolutely impossible.) She has watched me suffer and decline and she is grasping at straws to try and figure out a way to help me and I love her for it. 

After explaining everything and going round and round, we decided that it was time to get off such a dreary subject and join everyone else in more delightful topics.

I came home and on my Facebook wall there was a friend asking how to explain Endo and the fact that she is having a complete hysterectomy to her father. She was unsure how to explain it all to him. I put in my two cents and told her that all she could really do was explain it to him the way the doctor explained it to her. Tell him what you understand endometriosis to be. Then explain to him the treatment options you were given and the pros and cons of each option. The next step would be to tell him which option you chose and why you think that option is the best one for you. The last step is to ask if he has any questions or concerns. All you can do is answer them to the best of your ability and seek answers that you don't know, by calling your Endo specialist and asking. I told her that I was unsure if that was helpful, but that is the best that I could come up with.

I understand where she is coming from. It is hard to talk to loved ones about this illness. It is hard to tell them that you made a decision to do something that may make you life better, but there is no guarantee. For me it is hard to tell someone that I have chosen to have a hysterectomy but I am struggling with the decision because I have no children, and I am afraid that I won't get the relief that I need. It is hard to explain that you trust your doctor, and then tell them that he tells you that he can't guarantee that it will fix anything. He can't guarantee that it will make my pain better. He can't guarantee that it will prevent future surgeries. Most of all he can't tell me that he will fix it or cure it. It is hard to explain that even though I am going through the surgeries and trying to live with the decisions, that I am scared that the outcome will be no better than what I am currently living with. It is hard to explain all that and then not be apprehensive of the response I'll receive from them. 

So I regress. I am left with more questions and no closer to finding the answers. I am left leaving a loved one just as confused as I am. I am left just as frustrated, angry, and sad as them. We all struggle with this illness and with the frustration of having no answers. We all feel, at times, like there will be no end to our pain. Then to top it off, we then have to live with the fact that we have burdened our family with our illness. We have spouses, (some of us) children, siblings, parents, and friends that have to pick up the slack where we fall short. They have to deal with the fact that we won't always be able to participate in the big moments in their life. I believe that the people that live with us are the ones that are affected the most and get as frustrated as we do. Day in and day out they have to watch us suffer and do everything in our power to act like it is ok. They have to listen as we are told that there is no cure and that this may be an issue for the rest of our lives. They have to try and figure out the answers and get no where right along beside us. 

I feel like I am rambling on and on and being so negative on a day that is supposed to be filled with joy. I wrote this post because I found it intriguing that I was having difficulty explaining it to my family, and to myself, and I come home to find out that I am not the only one. As many people as I talk to, that suffer from this illness, it still surprises me when I find out am going through the same experience as someone else that is living with endo. It reminds me that writing this blog can be helpful. If I am having the same experience as someone I know, there has to be other women that are experiencing it too. We all seem to share a bond that no one else can comprehend. I feel it is my purpose in life to help other people live to see the day that a cure is found. I want to help young ladies and women everywhere to hold onto hope, and not give in to endometriosis. We don't have all the answers now, but there are wonderful Endo specialists that are working hard to help us find them. 

Sometimes the answers you seek are just a click away. Sometimes it is comforting to know you aren't the only one thinking about this, feeling like that, or trying to find an answer that seems to be buried. Sometimes you relate to someone else and find answers without really looking. I hope I can help someone else the way others have helped me. We are over 176million strong, and together we will find the answers we need.  💛

Sleeping on the couch

So anyone with this wonderful disorder, knows that there are days that the pain is severe and the flow is extremely heavy. When those days hit me, I am forced to sleep on our reclining couch. 

I am currently experiencing AF and for the last 2 days I have been confined to my couch and the bathroom. I attempted to go to bed my first night and I couldn't get comfortable. Laying on my back made my lower back hurt worse, laying on my stomach was not even an option, and lying on my side made my cramps worse. Couch here I come. Grabbed my heating pad, neck pillow, meds, glass of tea, and a towel. Slowly I made my way to the living room and placed the towel on the seat. As I am sure you all have experienced, the movement made the cramps unbearable. I reached over the arm of the couch and grabbed my short brown extension cord so that I could plug in my heating pad. My husband and I have learned that I am unable to bend over to plug in anything into a socket, so we set up a short extension cord that can be easily reached when I need it. After heating pad was turned on, it was time to get it situated to cover as much as my stomach as possible. The heating pad can't have to much pressure against my stomach, but has to have a little pressure to keep it against my skin for maximum effect. (We almost have to become experts to get some sort of relief.) I then sat there and cried until my meds kicked in and the heating pad started to work. So pain level went from a 10 to about an 8 1/2. Needless to say I didn't get much sleep. I took more meds around 4am and hubby woke me up making coffee at 5am. He apologized for waking me up (he knew I wasn't going to be able to sleep, but hadn't expected me to be on the couch). Of course I told him no biggie. I then started writhing in pain again. He asked when I took meds last and I told him an hour ago. I ended up taking some OTC CVS PMS meds (lots of caps there, lol). Hubby sat down and drank some coffee. I guess I was so worn out that I fell asleep crying. I woke up about 3 hrs later to a lot of pain, a clean kitchen, a working washer and dryer, and a husband asking me if I was ready for coffee. The only up side to this illness, for me, is I get to see just how much my husband understands this illness, and how much he loves me. 

Fast forward. I ended up bleeding extremely heavy, going through a pad every hour. The pain was excruciating and I knew it was another couch night. With such a heavy flow, I am unable to lay down. Pads are the only thing I can use, as tampons make the pain worse. The pads are not the most reliable form of protection when laying down and sleeping, especially when you are flowing like you're Niagara Falls and passing blood clots the size of golf balls and bigger.  Luckily I still had everything I needed around the couch, so I didn't have to prepare again. Another sleepless night of pain, discomfort, and walking very slowly to the bathroom. (I am contemplating putting a small room with a toilet in the corner of my living room, lol). 

It is aggravating to me that not only do we deal with pain, we have to deal with everything else too. If a man came in bleeding like they were Niagara Falls, they would figure out a way to FIX it. It just isn't natural! We should be able to crawl into our bed every night and sleep. We should have the ability to lay in our bed. I am tired of taking pain meds. I am scared that the pain is never going to end. I want to help my husband clean the kitchen, buy groceries, and do the laundry. I want to live life, not watch it happen around me. I am so afraid that a cure is not going to be found and more women are going to hurt needlessly and lose all the life that we have lost. The only thing I can do is pray that a cure will be found and pray that I stay strong enough to make it through every visit from AF. I can also spread as much knowledge as possible and spread awareness. 

We all get scared and have a hard time believing that there will come a day when we will get relief. That belief and hope is all we have. We have to hold onto the hope with all of our hearts and souls, in order to have the strength to continue fighting. I believe that the illness that we live with makes us stronger than almost anyone else. We experience some of the worst pain and lose so much of our lives because of this disorder and all of its complications. Yet we continue to smile, fight, and conquer our fears to make it through it all. We are strong, we will fight, and we will find a cure. We will continue to share our stories and show our support until we get more answers and a cure is found. 

  Endometriosis Support Ribbon Scarves. Wear your support around your neck. dkbcrochetworks.com  A portion of each sale is donated. 

It is amusing the looks of disbelief

Hubby and I went to town today to get gas and groceries. I remembered that I really needed to stop by the health food store, so we made a quick detour. For a couple of weeks now, we have been meaning to stop and something else has been more urgent. After not being able to go to the bathroom (poop) for a week, the urgency has shifted (which is ironic because the lack of shifting is what makes it so urgent. Sorry for the dry humor, have to laugh at it or otherwise I would fall apart). 

We walk in and I wanted to find something that is natural and gluten free, that will help with the chronic constipation. The young lady in the store was helping someone else, so we waited. I asked her if she could tell me where their supplements were that would assist with constipation. My wonderful hubby pointed out that I needed something that wouldn't cause cramping because I have enough pain. Gotta love it when you have someone in your life that will speak up and look out for you. Happy wife, happy life, is a saying my hubby takes to heart, lol. Getting back on track. She handed me a few items and she went to check out another customer. When she came back she asked if we knew the reason for the constipation and my husband spoke up again. He told her that I suffer from endometriosis and have adhesions. She looked at us kind of weird but said that she knew what endo was, so I didn't go into explanation. I did, however, tell her that I also have to take pain meds for the pain. She took that as I am always taking pain meds and she even said as much. She said, "So you take a lot of pain meds, which would be the cause of your constipation." I proceeded to tell her that I don't take a lot of pain meds because I know the dangers of addiction and the constipation issues. I also told her that my main cause of constipation is that the back of my uterus is attached to my rectum. The look on her face was priceless. It went from being somewhat sarcastic and skeptical, to being shocked and sympathetic. She rang me up and handed me my medicine and said nothing. I shocked her speechless. 

The shock and surprise of the lack of information, sympathy, and understanding is why it is so important to me that the Million Women March for Endometriosis 2014 is happening. It needs to be as well known as cancer. The knowledge and understanding NEEDS to be there. It is time, that every woman that is suffering from this disorder, be respected for what they accomplish and the class that they do it with. It is time that the women suffering from infertility, because of this illness, be treated with kindness and not condemned. It is time that we receive treatment from qualified physicians. It is high time that we are treated as people in agonizing pain and not as drug addicts. 

Now that I have gone off script. I just wanted to discuss that moment in my day that made my husband and I both smile and laugh. We walked in a store to find help for something that can cause death if not treated. We walked out smiling because it was amusing, the 360 degree turn around that we saw on her face with just one sentence. You could see her think about what she imagined having her uterus attached to her rectum would feel like, and it was priceless. 

I took a little joy in the fact that I took a fact and knocked that smug, condescending tone and look off of her face. She definitely had that tone and look that most of us get when we talk about pain meds with people in our lives and most doctors. I know it is wrong to take joy in this, but we needed that. We needed to smile and not feel like I was doing something wrong for taking pain meds for my pain.  We needed to give a little honest info about endo and what painful side effects can happen. Maybe next time someone mentions that they have endo, she will think about that shocking moment and be kinder and have a little of sympathy, rather than judgement. If I can help someone else be treated more kindly, then I have accomplished one of my goals. If I am going to have to live with all of this, I may as well use it to teach someone else a little humility. 

I know, I know. It is not my place to change the world, but the way I see it, we have all suffered long enough in silence and it is high time we speak out. 

I hope you found this funny and informative. I understand that some may take offense to this, but the way I see it, I wasn't rude, crude, or disrespectful. I used a fact about my illness to defend myself. I don't think that is the worst thing I could have done. Trust me, I have a mouth and have never been afraid to use it. 

My Story

 I transferred this post from my crochet blog. I wanted to make sure that all of my endometriosis posts were together.

The Million March for Endometriois is a cause that is very near and dear to me. I am a longtime sufferer of endometriosis and recently diagnosed with adenomyosis. The march has been set up to bring more awareness to this illness and the debilitating pain and infertility that it can cause. There are not enough physicians that truly understand this problem. There are many women that have a similar story to mine and it is not the way that women should be made to live.(Story will be below. Please note that the story is graphic, with not so pleasant information in it.)

I am making Endometriosis Awareness Ribbon Scarves to show my support for the cause. The scarves are the official attire for the march! I have spoken with a coordinator of the event and we are going to paint Washington DC YELLOW ! There are many objectives for this march, all of which NEED to be accomplished.

 Picture 1 is acrylic. Picture 2 is the light weight 100% Cotton. Picture 3 is a thicker warmer 100% Cotton.

Endometriosis is an illness that causes endometrial cells to grow outside of the uterus, which it is still unknown why. When those cells grow, they attach to other organs in the body. When it is that time of the month, all the cells react as though they are inside of the uterus, and can cause significant pain and complications with normal bodily functions.

My Story:
I became a "woman" when I was 13 years of age. From the very start, I had severe pain associated with my monthly. I missed 2-3 days of school every month. I was lucky to have a doctor that understood that I was not making up the pain and he wrote me a note for school, so that I did not get into trouble for missing so much school. My school was very understanding and did not reprimand me for missing school. It wasn't like I was enjoying myself, or running around having a good time. I was in the bathroom, laying on the floor, writhing and crying out in pain. I chose to stay in the bathroom because I would go through bouts of diarrhea and vomiting, along with extremely heavy bleeding. It was a wonderful thing to go through when I was supposed to be a child/teenager.
I ended up going to the hospital about 7 times in one year when I was 15-16. At that time I lived somewhere else and had doctor after doctor tell me that they did not know what was wrong with me. I was essentially hemorrhaging for 2 weeks at a time and would get a break for 2 whole days and then it would start again. I came back to the doctor that I had that was understanding and he told me that he suspected Endometriosis and put me on the DepoProvera shot, after trying many other Birth Control Pills to help with the symptoms that I suffered from. He said that it would help to maintain the illness and keep it from growing. (WRONG)
Fast forward to 2004, The pain had gotten so bad and the Depo Shots were no longer effective. The shots were supposed to be given every ninety days, and I was having to get them every sixty and I was still having a monthly, which hadn't happened for the many years I had taken it. I found a really good female Doctor at Baylor in Dallas. She was kind and explained things in a familiar and funny way. For instance, I had multiple cysts on my ovaries and she explained to me what my ovary SHOULD look like on the sonogram and what it DID look like. "You ovary is supposed to look like a chocolate chip cookie, with more cookie than chip. You have WAAAAAY more chip that you do cookie." LOL That made sense to me and it made me laugh, which is a hard thing to do when you are in so much pain. She ended up doing a lap surgery and found that I was a Stage 4 Endo sufferer. She said that they found it on every organ in my abdomen. As good as the doctor was, she did not have the knowledge to remove the endometriosis completely, and therefore made it worse for me in the long run.
After that surgery, I had no funds to keep going to the doctor, as now I had a pre existing condition. I was unable to acquire ins that would cover my treatment, so I lived in agony until 2013. By this time, I had had a miscarriage (April 2007), and had not been to the doctor since 2004, so no pre existing. My husband and I had been trying to get pregnant since our miscarriage, with no success. The pain and complications had gotten so severe that I was ready to shoot myself. Dying would be so much easier than going through the pain up to 2 times a month. Mind you, the pain is not only when I have my monthly visitor. It lasted for weeks. It messed up my bowels and caused pain with marital "fun", which wasn't so fun. I would sit in the living room and cry, and run to the bathroom and cry, puke, and be on the toilet. Imagine you are on the toilet with diarrhea and you have a waste basket in front of you because you are vomiting too. Sounds fun right? Well, add being in the worst pain that you can imagine. After I would get off of my monthly, I would get extremely constipated and then out of nowhere would have to run to bathroom with diarrhea (another wonderful side affect of Endo)
I was able to get on my husband's medical ins through his job at the beginning of this year. We had finally paid off some of our large bills and were able to afford the premiums. I did a Google search for a gyno that specialized in treating endometriosis. It brought up several names, but only one woman. (I prefer women because I was unfortunately raped as a child, and feel uncomfortable with men doctors) I made an appointment and went to see her. I described my situation and all of the complications that I was having. I even told her that I was to the point of wanting to die because the pain was so unbearable. She looked at me and told me that I was "normal", having cramps like most women, and sent me home with a years worth of Aleve. Yeah, ALEVE. I walked out of her office furious. My husband was even more upset than me. He knew that what I was going through was not "normal". He has a mother and 2 sisters, and he had never seen anyone in agony the way that I was. I joined a support group on Facebook, because I knew that I was NOT NORMAL, and was referred to Dr Dulemba. He is a real Specialist that treats only women who have Endo and the complications that results from having endo. I made an appointment with him and saw him at the end of March. His sonographer did a sonogram and found a endometrial mass on one of my ovarian tubes and saw that my ovaries were not moving, meaning they were adhered to something else in my abdomen. We set  up surgery for April 3rd and he found that I was far from normal. On the post op report it is said that my anatomy was unidentifiable due to every organ in my abdomen was adhered together and they couldn't tell one organ from another. Dr Dulemba was given permission to take pictures to use as a teaching tool. He said that when he got in there, it was so much worse than he had originally thought, that he did not have time to take pictures. He was more focused on getting me ":fixed" than anything. He also told me that there is a point system that they use to determine what stage of endometriosis you have. You reach a Stage 4 at 40 points and he quit counting at 72. He found that I have Adenomyosis, which happens when the endometriosis penetrates the uterine muscle. The only way to treat the adeno is to have a hysterectomy. There is no cure for the endometriosis. Dr Dulemba excised the endo, which is the best treatment available for this illness right now. He disconnected all of my organs and patched me back up. He attempted to keep the adhesions from coming back, but he suspects that some of them have returned.
Needless to say, I am now at a point where I am going to have to fight with the insurance company, United Health Care, because the hospital that my In Network doctor uses, is Out Of Network. The hospital bill is over $177,000 and UHC is only willing to pay a little over $34,000. So now, I not only fight my body and the pain, I have to fight the insurance company. I HAD to have this surgery. It wasn't something that was an elective surgery. I need another surgery because I am having major issues with pain and trouble with severe constipation. I am not able to have the surgery because I owe the hospital over $140,000 and the ins has informed me that I am close to my yearly max, though they aren't paying that out.
I am considering a hysterectomy because I have no quality of life. I am not able to do normal, everyday things. I can't do dishes, wash laundry, vacuum, or play with my dogs. I can't have a marital relationship with my husband, so can't get pregnant, even if it were possible.

No one should have to deal with this.This is torture. I am being punished for being ill, for getting the necessary treatment, and for wanting to be a productive member of society. I would love to be able to go to the lake with friends and family, to Six Flags or Hurricane Harbor, or even go outside and help with yard work. I spend my days inside my house, hiding from the world. How is it fair? I know that life isn't fair, but this is beyond unfair. There is no reason that women should have to live in fear and agony. My hope is that this march will bring more awareness and many more changes to the medical community and how they treat us. We are passed over and pushed aside as though we don't matter. Some of us are no better than some cancer patients. No we won't die from Endometriosis, but we can die from some of the complications. Some of us, like me, suffer from severe pain. More women suffer from endo than are suffering from Breast Cancer (my grandmother is a survivor, so I am not trying to take anything away from it's importance), yet little attention and/or knowledge is focused on this illness. I think it is time there is and there are atleast a million other women that agree with me.

If you are interested in going to this event, please visit http://www.millionwomanmarch2014.org/ to see how you can participate. If you are planning on going, please visit my website and buy a scarf to wear to the event. A portion of the proceeds will be donated to help. Barbara Page is getting all of the information available to make this scarf the Official Attire for the March for Endo 2014!

Thank you for reading and I hope that you walk away with a little more knowledge about Endometriosis. If you know a young lady/woman that is suffering from painful periods, please don't think it is "normal". Pain is your body's way of telling you that there is a problem. Don't ignore it.

Some Complications of My Endometriosis

Recently I posted to my crochet blog about my story and it was suggested that I start blogging about my endo experience. I was posting to my crochet blog because I am participating in the Million Women March for Endometriosis 2014 by making support ribbon scarves for everyone to wear during the march in Washington DC. Unfortunately I will be unable to attend because my illness keeps me from venturing far from home. I will be there in spirit and will be hanging around the necks of those that are able to attend. I think that is a big enough presence for me.

So, now for the reason for this post. Endometriosis doesn't just affect women during that time of the month. It messes with so many other bodily functions throughout the entire month. It can affect sleep patterns, mood, and cause bowel issues, just to name a few. I live with all three of the above. 

My sleep patterns are so wonky that I never know if I am going to be able to sleep or if I can stay awake. Am I going to be able to sleep for more than an hour at a time? Am I going to sleep for 10 hours and still feel like I haven't slept enough? Most of the time I am awake until 3 or 4 am. My stomach tends to think that night time is the best time to be a bother. 

My bowel issue is constipation. I have adhesions that adhere my uterus to my rectum and my ovaries to my sigmoid and cecum. When I have bowel moving through my intestines, it is hard and feels jagged, and feels like it is scraping against my uterus, ovaries, and the back of my vaginal wall. (If you can imagine something scraping its way through your intestines and hitting your organs on its way through, you can just imagine how much it can hurt.)  I have spoken with my endo specialist, Dr Dulemba, and he is almost positive that some of my adhesions have returned. It is extremely hard for me to get the bowel out. Since my intestines are being pulled in directions they aren't meant to go, you can understand why it would be hard to squeeze it out. The pain and pressure tends to keep me in a bind (punt intended) most of the time. The cramping can be unbearable. I feel diarrhea cramps and feel like I really need to rush to the bathroom, only to sit on the toilet and cry because I am unable to go and it hurts to try. 

Dealing with the mood swings. I have been diagnosed with severe anxiety. I couldn't possibly figure out why I would have severe anxiety (sarcasm, of course). It isn't like I have lived with severe pain, been dismissed by tons of doctors, or had to live with the fact that I can't live my life. 

I have survived a lot in my life. That is the thing that probably pisses me off the most. I was an abused child, physically, mentally, emotionally and sexually. Childhood was something I watched everyone else have. Now I watch as everyone else has a life as an adult. Pain has always been a factor in my life and I thought that once I grew up I could escape the pain that I had to endure as a child. Endometriosis took that dream from me. It tends to make you angry, sad, hopeless, and makes you feel guilty. 

I am lucky to have an understanding husband. He is beyond supportive. For over 7 years he has watched as this illness has taken more and more of our life from us. He goes to work everyday of the week and then comes home and does all the work around the house. That makes me feel so guilty. I should take care of him because that is my job. He does his job by providing for us and it is my job to take care of him and our home. I do good to get dinner ready by the time he gets off work, and there are more and more days that I am not able to even do that. I want to be able to clean the house, do the laundry, and give him a break when he gets home. I want to be able to relax with him and show him ;) how much I appreciate all that he does for me. Endometriosis takes that ability away from me each and every day. It takes its toll on how I value myself. He tells me constantly that it is beyond my control, and logically I know he is right. Emotionally I feel as though I am a burden. I cost so much money, and occupy so much of his time (not in a good way). He holds my hand and tells me that he knew what he was getting into when he got together with me and he wouldn't change his decision. I must say, he did know, because I told him exactly what he was getting. I didn't want either of us to get too invested if it was something that he didn't see coming and couldn't handle. 

It is just hard to sit and watch life as it passes you by. You watch everyone go to concerts, amusement parks, camping, or to the lake, and all you can do is wish you could join them. Your friends have children and go to school plays or ball games and post, on social networks, how excited they are to watch their accomplishments. You just watch and wish that you could feel the way they feel. 

I know I am long winded and can tend to be all over the place, but I believe that it is important to share all of this. There are others that experience these feelings of discontent with the hand that endo has dealt them. I know I am not alone. I hear the stories and sympathize completely. I write all of these thoughts and experiences in the hopes that I can let that one person, that feels like no one understands, know that she is not alone. She isn't crazy or lazy. She is important and matters. I found a blog that helped me and I think that it is only right for me to pay it forward. 

It is my hope that you walk away with a little more understanding and sympathy for the people that cross your path that suffer from an invisible and/or incurable illness. It is also my hope that if you suffer from endometriosis, you found a place to find the understanding and sympathy that you can't always get elsewhere in your life. 

Just a few things I didn't know

I thank you for visiting my blog. My name is Kristen and I live with Endometriosis. There are so many issues and complications that come with having endometriosis. With all the information that I have been given, over the 20 years of living with this illness, there are so many things I didn't know. I hope that this blog may help someone else that is living with and bearing through this illness.

I didn't know that endometriosis can cause a new and extremely painful illness called adenomyosis. What is adenomyosis? The way it has been described to me: it is when the endometriosis penetrates the uterine muscle and begins to grow within the muscle. There is no way to remove the illness from the uterine muscle. There are several treatments for the symptoms and only one way to get rid of it, a hysterectomy. I didn't know that it can cause complications with pregnancy. It can weaken your uterus to the point where your uterus can not support a pregnancy. Adenomyosis, adeno for short, causes severe pain before, during, and after your monthly period. I hurt for approximately 1 week before I start, for the 7 days of my period, and for a few days after. There is no relief from the pain other than taking pain medicine. The pain meds don't take care of it all, either. The pain meds are essentially a cheap bandaid that you can become reliant upon.

I didn't know that taking pain meds was going to be a way to have somewhat of a quality of life.

I didn't know that endo, adeno, and the complications of them both were going to prevent me from having children, doing laundry, washing dishes, going to the bathroom, and doing so many other things in life.

I didn't know that listening to my gynecologists was going to prolong my treatment, make things worse, and cause so much more pain. Who knew that my regular ob/gyn didn't know about an illness that is a female only medical condition? Who knew that my ob/gyn didn't know that giving me birth control was just masking the problem and not helping it in any way? Who knew that I needed to find a endo specialist to get the correct treatment to enable a better quality of life and have a fighting chance at having children?

I didn't know that I would be having a hysterectomy at age 32/33, and dealing with the fact that I will not ever be able to bare children. Menopause in my early 30's? Really? Yes, really.
I wish I would've known more.

I will write more about the symptoms, complications, and struggles that I, and others, go through while living with this incurable disease. I will do my best to find and accrue all the information that I can find about the facts and myths of this illness. I want so badly to prevent at least one other person from trusting the wrong information and missing out on life and losing the choice to have children or be an active participant in their life.