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.

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.