Yesterday morning I happened to be over on the side of town where we previously first rented when we moved here. I had a little extra time after my appointment, so I decided to take a quick drive down our old street and see the house and neighborhood again. I stopped for a second just looking at the house, all of the gorgeous trees that had made their seasonal changes, and even some trees that had already lost all of their leaves, where bare branches only remain. As I sat there for a second, so many memories and emotions flooded my mind. We did have some good memories in that house (both of our boys took their first steps there!!) There are others too, but we also went through a lot of trials in that house, there were more bad memories than good. I sat there and thought back of where we were even just 6 months ago to where we are now. So much has changed, life is different now, but it hasn't been without struggle.
It really is hard to believe that its already been 6 months that we have moved into our new house (6 months ago on this date to be exact.) We have grown closer as a family, we have grown closer to God, and we have each had some personal progress and growth. This move brought us so much closer to B's work, he can now come home on lunch if he wants or can just stop by for a few minutes if need be. Amazing what moving 30 minutes closer can do, we see a lot more of him now (well, except for the past 7 weeks!) and being able to see him more has been good for all of us.
We also found a church that we dearly love and it just so happens to be a few minutes away as well. Finding a good church has been SO beneficial for us, we had stopped going to church since we had moved here a few years ago really, there were a lot of fears with Eli and my own personal fears about sending him as well, so we just opted to not attend church. We still incorporated God and prayer in our home and with the boys, but church was really missing and looking back, my biggest regret was not overcoming some of my fears earlier and finding and attending church together as a family. While letting go of some of my fears was so incredibly hard, the benefit of letting go of that anxiety has been far better than I could have imagined. Our church has been amazing with the boys, especially E since day one and we couldn't be more thankful, K loves it too, he runs to his Sunday school class eager to see his teachers and learn!
We have each all had personal progress and growth since the move as well. I think the biggest area of progress and growth can be seen in E. He started preschool in August and it has been a complete success! We are so thankful and blessed that he has an amazing teacher and some pretty amazing paras as well. He still does ABA (last month he reached 79 hours total for the whole month of Oct!) he works so hard, and his hard work is really starting to pay off. He has officially been in ABA for one year now and the amount of progress he has made is remarkable. His therapists were just talking to me last week about how far he has come. When they first came into the home a year ago, E couldn't even stand for them to be in the same room as him, let alone try to do therapy with him. It took him a good month before he would let the therapists into the room he was in, and another month to start interacting with him to try and design a program to meet his needs. I look back at the videos of those early ABA days and I am just amazed as to what I see now, its like we have a different child, and it is absolutely amazing! He still has a long road ahead, but the amount of progress he has made has been stunning. He is also making huge progress with his speech output device, his Novachat. We have been going to MMI every week for the past 10 weeks to try and become more and more familiar with his device (its therapy for him and parent training for me). I will admit that even up to a month ago or so, I was having a love hate relationship with the device, I was starting to fear that he will never functionally speak if he continuously has this device and uses it instead of trying to actually talk (his speech therapy only consists of using the device at this time). Well the past couple weeks and this past Wednesday really changed my mind about that little thing; we are starting to see into Eli's brain and what he is thinking for the first time, all before this it was a guess as to what he wanted or needed or was thinking, but with this device, he has learned to use it so fluently that he not only uses it to request what he wants or needs, but he is starting to use it to show us what he is thinking, and I think its even showing him that we can finally understand him a little bit better. It has been the biggest blessing. On Wednesday, his therapist was programming some info in the "about me"section on the device, the info was that his name was E and he has two cats, and it gave their names. He was across the room and as soon as he heard that, he stopped walking, turned around ran over to the device and pushed the button again where it once again said "My name is E, I have two cats..." He started squealing with delight and running up to this therapists and myself with the biggest smile on his face shaking his head yes over and over. Tears y'all, seriously, tears, even one of his therapists had tears. Not only did he understand 100% completely what the device was saying, but it was as if he was telling us, "yes! yes! If I could speak right now, that is what I would say to you!" Ever since then, he has been obsessed with the cats, chasing them all around and playing with them. His whole life, even just a few weeks ago, he had remained oblivious to their existence. Absolutely amazing. His therapists told me that they are going to incorporate buttons into his device for Christmas next time we go, they are going to try and teach him the buttons and how and when to use them, so he can actually participate in Christmas with us for the FIRST TIME EVER. There are no words that can even begin to explain my excitement for this, E will be 4 years old in just under two months, so this will be his 4th Christmas, and while he has of course been present all of those Christmases, thats really all that was, he was physically present but not able to participate really in any of our Christmas traditions, gift giving, Christmas Eve service, etc. If he can participate in even just one of the activities with the help of his device, we will be elated!! I get chills just thinking about it. I am so very excited!
With all of this being said, we still have the next move on the horizon. The fact E has made so much progress forward and that he is with a great school here with an amazing special education program, not to mention all of his therapists, moving is a huge concern for us. E's therapists have already explained there will be a big leap back for him, and of course we have the anxiety of not being able to find as good of therapists in our next location, or as good of a school. Moving is hard for anyone, and being military, moving is not foreign to us at all, heck we have moved 4 times in the past 5 years! But, in E's particular case, it just takes it to a whole new level. We have to meet in January to find out if we will be medically cleared to go to our next location or not, in the mean time, we are praying, praying hard that E and our whole family can deal with this move in the best way possible. When we first got the news, we found out just two months after moving into the house we built, I honestly thought it was a joke and by the look on B's face, I knew it wasn't. One thing I keep reminding myself and that instantly came to my mind when I received the news, was that God already has this planned out, we are just along for the journey. That helps my anxiety a little bit about the situation, knowing that I am not the one in control, but also being the control freak I am, makes me just a little bit crazy! Honestly though, while we had no hesitation moving to where we are now, if it weren't for us moving here, E would likely not be where he is today. This next location might have even better resources than what we have now, or this situation might turn out differently and test our faith even more than what we could ever imagine, we don't know, but we do know that as long as we are following God and including him in every step of the way, we can't go wrong and if we fall, He will be right there to pick us back up.
A month ago, I was in a sermon during a very difficult situation for a dear friend of mine, when the pastor started to say that it is so easy to praise God in the good times, its during the darkest times of our lives that we find it nearly impossible to pray, let alone praise Him. That is the absolute truth, but if we persevere and keep on, keeping God in our lives, even if we don't have the strength to pray for ourselves, but ask others to pray, we find our real inner strength, we find that we draw closer to Him than we ever have been or even thought possible. It really is during suffering, and no one's suffering looks the same, but during our personal bouts of suffering, whatever that might look like for you, that we are growing, growing so much spiritually, gaining so much wisdom, strength, and perseverance by His mercy and grace. It is my prayer that I always remember that, and that you always remember that too, whatever life throws at you.
Sunday, November 8, 2015
Tuesday, April 14, 2015
Autism and Overcoming My Mama Guilt by Faith and Love
I felt it was only appropriate to write a post about Autism, being that it is Autism Awareness Month. Yay for blue!! We are soon approaching one year since Eli was diagnosed with non-verbal autism, along with a couple of other associated disorders. This year has been tough, soon after the diagnosis, I was in denial. I refused to believe that my perfect miracle of a baby boy had Autism, he was simply just delayed a little bit. It didn't help that several other people tried to argue against the diagnosis, thinking back to this angers me, however at the time, it just intensified my denial even more. After I got over the denial (and lets face it, didn't take long after the many specialists we saw and three different therapies started up, I couldn't deny his diagnosis any longer, he wasn't just simply delayed, there indeed was something else going on, and whether I wanted to accept it or not, it was/is Autism).
Denial left and soon after, guilt just overtook me.. it was all I could think about.. what did I do wrong? I lost count of how many times I was questioned about my pregnancy with him by all of his doctors, I started to think I did something majorly wrong.. I should have taken more vitamins, I should have been more conscious of pollutants and potential toxins around me, and lets not forget... perhaps I caused this by going through fertility treatments, I forced a pregnancy and here's what happened.. I couldn't get those thoughts out of my mind. I spent so many sleepless nights thinking of what I should have or could have done differently. I finally came to realize that there was nothing I could have or should have done differently, I did everything I could do to ensure I was healthy before getting pregnant and during my pregnancy, I did it all to the best of my ability, I did my best, and thats what matters.
After that guilt left, more guilty feelings flooded in.. As Eli's daily ABA therapy sessions started, I started to feel so guilty as I would be spending one on one time with Kealan and teaching him the little things that I was supposed to teach Eli, but instead, had to hire a team of professional strangers to help my son learn basic skills. That guilt stung more than the guilty feelings of what I could have or should have done differently in pregnancy. As I would look in on the sessions and see his therapists work with him and teach him how to do the simplest of things (put a block in a cup, stack blocks, stand up, etc) my heart hurt so much, as his mama, I felt so guilty that I could not teach him those simple things, it felt wrong on so many levels. And what about all the months of Kealan's first year of life being stuck in a stroller and tagging along to all of his brother's therapies.. I felt immense guilt for Kealan not walking until he was 19 months old, as he didn't get much floor time or time to really play. Throughout all of that though, he has been his brother's biggest cheerleader and still is, I think he always will be.
Through the sweet words and encouragement from my husband and my faith in God and trusting his will for our lives, I have overcome a lot of this mama guilt. My husband is an amazing and wise man, he told me one night something I really really needed to hear (he's pretty good at that!) He told me that no matter how hard he or I tried, Eli would never be able to learn some of those simple skills from us, it was just a fact, it didn't mean that we were bad parents or we didn't try hard enough, he has to have professional help and things taught to him in a certain way that he understands. Of course through ABA, we actively participate and they are teaching us these methods along the way, so that helps a lot. Just hearing B say that though was comforting and reassuring. A much needed reminder I think all mamas/parents/caregivers of spectrum kids and other special needs kids need to remember.
I could go on and on about the different areas of guilt I felt and still have to a degree, but it all boils down to one thing: Eli is loved, he is getting the best help out there, we are doing our absolute best to make sure he and his brother are living as normal of a life as possible, and we know that God has a plan for his life. This is all a part of Eli's story. I really think he is going to do something big in this world some day, I am not sure what, but his determination, eye for detail and to appreciate and focus on all the colors, instead of black and white, tell me he has one amazing mind. After all, Eli is only our son on this side of Heaven for a short while, God gave him to us to love and care for temporarily, so we raise him (and Kealan) to the best of our ability with as much love and care as possible. Our God doesn't expect perfect from us in anything, especially parenting, I think thats something we all need to remember. I know it certainly helps me in my feelings of guilt and the daily struggles that come with raising a child with Autism or really any special needs for that matter. He knows we are doing our best, he already has Eli's story and the story of our family written out, its all going to be okay, we are just along for the journey, and while it hasn't been the smoothest ride, we can have peace that this journey is playing out just as it should and with the Lord our God right by our side.
Monday, March 16, 2015
It All Matters!
Lately I have been having issues with monotony and motherhood.. I do the same thing over and over again, every single day. I get tired of it, as I am sure all mamas do at some point (and if you say you don't or never have felt this way, you're lying! That, or you are flippin' supernatural or related to Michelle Duggar). Anyways, I'm slowly learning that everything we do in motherhood matters! Every. Single. Thing.
My oldest child really showed me this today, even without words, he showed me his mama mattered to him! I walked in after being gone from a dental appointment while honestly thinking the last thing I wanted to do was be around screaming children and fixing them dinner that would likely just end up on the floor. I walked in, and my oldest ran up behind me and gave me the biggest hug, while my youngest was at my feet in the front reaching up for me. My heart melted. My children really do love me and appreciate me in their own way. It turns out dinner didn't end up on the floor and both boys gave their mama a kiss as I cleaned them up from dinner.
As I was sitting on the couch earlier, after doing our full bedtime routine of teeth brushing, prayers, hugs/kisses, and playing lullaby music, it hit me.. My children ran to me for hugs and affection because what I do for them matters! Every morning, getting them dressed and fed breakfast, changing their diapers, working on therapy with Eli, even when that means K might be missing out on attention, fixing them meals and snacks even though it might just end up on the floor, getting down to their level and playing with them, washing their hands before they eat, talking to them throughout the day even though I don't get much response back, and tucking them into bed every night only to know I will do the same things all over again the next day. It ALL matters! Littles can be so exhausting both mentally and physically, but don't ever think for a second they don't notice what you do for them. Realizing this makes me feel that I am more than 'just a mom' . So to the mamas who are mentally and physically exhausted with your littles and tired of the monotony.. What you are doing matters, you are so much more than just a mom!
My oldest child really showed me this today, even without words, he showed me his mama mattered to him! I walked in after being gone from a dental appointment while honestly thinking the last thing I wanted to do was be around screaming children and fixing them dinner that would likely just end up on the floor. I walked in, and my oldest ran up behind me and gave me the biggest hug, while my youngest was at my feet in the front reaching up for me. My heart melted. My children really do love me and appreciate me in their own way. It turns out dinner didn't end up on the floor and both boys gave their mama a kiss as I cleaned them up from dinner.
As I was sitting on the couch earlier, after doing our full bedtime routine of teeth brushing, prayers, hugs/kisses, and playing lullaby music, it hit me.. My children ran to me for hugs and affection because what I do for them matters! Every morning, getting them dressed and fed breakfast, changing their diapers, working on therapy with Eli, even when that means K might be missing out on attention, fixing them meals and snacks even though it might just end up on the floor, getting down to their level and playing with them, washing their hands before they eat, talking to them throughout the day even though I don't get much response back, and tucking them into bed every night only to know I will do the same things all over again the next day. It ALL matters! Littles can be so exhausting both mentally and physically, but don't ever think for a second they don't notice what you do for them. Realizing this makes me feel that I am more than 'just a mom' . So to the mamas who are mentally and physically exhausted with your littles and tired of the monotony.. What you are doing matters, you are so much more than just a mom!
Thursday, February 12, 2015
Why I Will Always Wear Yellow
Ever since I can remember, I have always had a lot of pain with monthly cycles. I remember being not quite a teenager yet and writhing in pain on the bathroom floor and in the bath tub just trying to get a little relief. None of my friends ever complained about their cycles, or really any females that I knew of, so I decided I must just have a really low pain tolerance, obviously if every other female in this world could handle it, then it must be normal. Eventually, I ended up going to an OBGYN where it was found I was developing ovarian cysts, I was put on birth control pills and told that some women just have a harder time than others when it came to their cycles.
I continued on birth control pills for another 6-7 years, the pain let up a little bit, but I knew there was still something not quite right. One of my rock bottom moments in this journey came to me when I was a college student working two jobs. I was on my way to work one day when I had to pull over due to unbearable pain. I ended up calling my boss who ended up calling an ambulance for me. I was taken to the hospital where I was asked a lot of questions about my pain, how long I had been experiencing it, and if I was sexually active. After questioning, I was quickly given the diagnosis of pelvic inflammatory disease (PID) most often caused by an STD. The ER physician simply took my symptoms, my age, and the fact that I was sexually active and gave me that diagnosis. I was given three different antibiotics and instructed to take them all before I could be released. The saddest part, all cultures to check infection which would lead to PID all came back negative, I had no infection. I was still told it was PID, it was the only thing it could be. I left the hospital that evening still in pain and devastated no one, not even the ER was taking me seriously. I was frustrated because I knew something more was going on and pumping my body full of unnecessary antibiotics was not going to solve the problem. A few months went by and I sought another opinion, this time from a female gynecologist. I thought perhaps she might understand a little bit more and be able to help me. Once again, it was another disappointment. She told me I fit some of the symptoms of a condition known as endometriosis, but I was far too young to have that (I was twenty years old at this time and had been suffering now for a total of 8 years). I continued to live in pain and started developing a pretty bad case of depression and anxiety, I was tired of being in pain and no one believing me or taking me seriously.
A year later, things started looking up. I married the man of my dreams and soon after we began talking about trying for a family. With my history of reproductive issues and ovarian cysts, we weren't sure if conception would be difficult, so we thought it was best to begin trying. Several cycles went by with no positive pregnancy test, this really came as no surprise. After many failed attempts and a miscarriage, we sought the help of an OBGYN. I decided I wouldn't even bring up my chronic pelvic pain or the fact my cycles were unbearable, I would stick to just getting help to have a baby. In our infertility consult, my doctor started asking me if I ever had any pain with cycles. I was honest and told him I had quite a bit of pain, but many doctors assured me it was normal. I also told him about the diagnosis of PID I was given a few years prior. He strongly disagreed and started mentioning the strong possibility of endometriosis. This was the second time in my life now I had heard about endometriosis, or what I eventually became to know as 'endo'. My main goal was to get pregnant, so he came up with a treatment plan to try and achieve successful conception and pregnancy. Six months later and after many injections, tests, and hormones, we conceived a precious baby boy.
After the birth of our son, endo was the last thing on my mind, that is, until my cycles resumed. My cycles came back very quickly postpartum along with that familiar excruciating pain. Five months later, I developed a large blood filled ovarian cyst that needed to be surgically removed. I had a laparoscopy to remove the cyst and during surgery multiple areas of endo were found and burned off. I was diagnosed with Stage I-II endo, which was mild. The centerforendo tells us that there are four stages of endometriosis: I: minimal II: mild III: Moderate IV: Severe. Finally, finally I had my answer to all the years of pain, and finally I had hope, or at least I thought I did.. My surgeon had burned off all of the visible areas of endo, but strongly recommended I go on Lupron to prevent re-growth of more endo. He also suggested if we wanted more children, we should try to get pregnant again immediately. We had a six month old at the time, we were in no way wanting to get pregnant again or put my body into a medical menopause with Lupron. We decided to not do anything, we would just wait it out.
It turns out, God had other plans for us. We ended up conceiving a second precious baby boy just two months later. The pregnancy was full of complications, but we ended up delivering a healthy term baby boy. After the birth, once again, my cycles resumed quickly and this time with a vengeance. I was so thankful I had two amazing healthy children, yet I couldn't enjoy them, once again, depression and anxiety started to consume my life. No one understood what I was going through, even I didn't understand.. I thought my surgery to burn off all endo solved everything. I was confused and frustrated as to why I was in even more pain than I had ever been in my life, even before the surgery. I started to isolate myself from others. Most friends I had eventually stopped asking me to do things or to have play dates because my answer was always the same 'no'. The majority of the month was spent just trying to get through each day and take care of myself, let alone two small children. I was embarrassed, lonely, and in a huge amount of physical and emotional pain. Along with the near constant pelvic pain, I started developing some pretty bad GI symptoms and started losing weight as pretty much everything I was eating I was having some sort of GI reaction to. I sought the help of many doctors who all told me I had irritable bowel syndrome (IBS), a hormonal imbalance, and anxiety. It turns out, many women are given this diagnosis, as endo can create many symptoms similar to IBS ( http://www.centerforendo.com/articles/bowel.htm) Obviously, no one could help me.. so I decided to start doing tons of research to try and find someone who could. I had to get my life back, too many days were being spent wasted. I eventually found quite a few resources and an amazing support group on Facebook, Nancy's Nook. It was through that virtual support group where I really came to learn about excision surgery. I felt that seeking out an excision specialist would be my best bet. I continued to do a lot of research on excision surgery and the specialists that were available in the United States. There were many excision specialists, but all of them were so so far away or didn't accept my insurance, so I decided excision surgery wouldn't be an option at this time and I would just have to wait it out.
The summer of 2014 proved to be my most trying time yet. I really didn't things could get any worse, but I was wrong, I was very wrong. My husband was gone on another deployment and we had recently been given some pretty serious news regarding my oldest child and his health. I was taking him to doctor appointments and therapy appointments nearly every day and trying to take care of our one year old as well. It was during this time that my symptoms went from 'really bad' to 'I can't do this anymore' . Performing activities of daily living, walking, and even going to the bathroom were a huge task for me and excruciating. It got to the point where I would have anxiety attacks every time I would have to use the bathroom because I knew the pain that would come with it. I was so sick and tired of living like this and not being able to be 100% for my kids. Once again, I tried a new OBGYN in my local area. I ended up seeing him multiple times in a span of just a couple months. At first, with all my other symptoms, he felt there was more going on and sent me to an endocrinologist and neurologist to rule other things out. Little did I know, but at that time, my endo and another condition I knew nothing about, was wreaking havoc on my whole body, causing severe symptoms all throughout my system. I was told that my high stress levels were just making my endo flare really bad, it would get better when I got my stress levels under control. While I really wanted to believe that stress was just causing an increase in symptoms, I didn't fully believe it. It wasn't until an evening last fall that I knew things were getting critical. I was so weak I could barely walk around, let alone take care of my boys, I was in so much pain that I would just lay on my couch with a heating pad while I had the boys gated in a separate room. I was severely nauseous, I had no appetite, my heart constantly pounded, and I was dizzy. I couldn't even get down on the floor to play with my boys anymore, I had reached my breaking point. I wanted to be the mama to my boys that I never could be before, my husband would soon be returning and I wanted to be the wife that I never could be before, I wanted to be better for everyone, but also for myself. I was tired of suffering and tired of seeing the ones I love suffer all because I couldn't give my all.
I started researching again, there had to be someone out there that could help me, there just had to be. Looking back, all the sleepless nights spent on my floor with a heating pad and chamomile tea were a huge blessing, not only did I get tons of research done and become even more educated on endo, but I could chat with other women in my endo FB group that really understood what I was going through. Talking with them and reading their stories really gave me hope, but most of all, it made me feel validated, what I was going through and the every day suffering was real and I wasn't alone. It was at this point that endo really came to be my identity. I had let the disease take so much control over me, I was now endo. It was all I knew.
All of my research proved to be successful in finding an excision specialist semi close to me. I had finally found someone! I was elated to say the least. I ended up finding a specialist in Minneapolis, MN. I found out he took my insurance and made a consult for just a couple weeks later. The consult went well and I had so much hope! I was in awe that I would finally be receiving excision surgery, "the gold standard in treating endometriosis" ( centerforendo.com) . Surgery day finally came and my specialist spent 3 1/2 hours excising various areas of endo, including deep endo in the rectum. He also ended up cutting out endo behind both ovaries, on the uterosacral ligaments, behind the cervix, and the rectosigmoid part of the colon. Adhesions were taken down from my bowel that was partly attached to my pelvic sidewall and my ovaries were suspended to prevent any adhesions from forming. My surgeon was amazing, he has a huge amount of compassion for his patents, and he really put me at ease. He is still keeping in touch with me, checking up on me to see how I am doing one month post op. He spent nearly thirty minutes with my husband after he performed my surgery just to go over with him everything he found and cut out along with pictures to show just exactly what he did. He explained that the places where endo was found, particularly deep endo in the rectum was the reason for my 'IBS' symptoms. The disease went so deep, he had to cut down to nearly the muscle. He couldn't believe all the disease that had been missed from my previous surgery two years prior. His prognosis as far as my endo goes is quite good, he feels he has excised every bit of endo that he could see.
Recovery has not been easy, certainly harder than what I thought it would be, but I still believe there is hope. I am still in the 'wait and see' part to determine whether or not the surgery will have been a success for me as far as pain goes and better quality of life. Unfortunately, we do know that not all pelvic pain will be gone due to a newly found diagnosis of adenomyosis during the surgery process. While I can't say whether I am 'cured' or not as there really is no 'cure' for endo, I have great hope and faith that my life will be different. I was told and I am still being told that recovery from excision is a process, once surgical and internal incisions heal, then comes months of pelvic physical therapy. It really pains me that my children see the struggles I have been going through, but my hope is that they see their mama as someone who perseveres and never gives up, I especially want to set that example for my oldest. The eight scars that remain on my abdomen from my endo surgeries go far less deep than the scars inside. Endo can destroy a woman's whole life, a whole family. Not only can it rob a woman of her fertility, but for the women who do end up having children, it robs them of the precious time with those children that they longed and prayed so hard for. No, endo does not kill.. the body that is. But it does kill the spirit. We need so much more awareness of this disease, many many women go years with suffering before they are diagnosed, this can have a huge psychological impact. More info on why it takes so long for endo to be diagnosed and the psychological impacts that can develop can be found here. I went almost 10 years before I was diagnosed, but there are women who have gone much longer than that and its not okay. If I am fortunate enough to ever have another child, and if this child is a girl, I fear I will pass this disease onto her. While endo is no legacy I would ever want to leave behind, I know one thing for sure, she will not be one of those women who go years with suffering without being diagnosed and treated. I will be her biggest advocate and support, which is what all women with endo need and deserve. Not only do we need support but encouragement, education, and to get the word about endo out there even more. I think many people keep this disease behind closed doors because its a 'menstrual' disease and can come with some quite embarrassing symptoms such as pain with intercourse and pain and difficulty with bowel movements (http://www.endometriosisassn.org/endo.html). The fact is, endo isn't necessarily only a reproductive disease. Endo implants can attach and grow outside of the reproductive system: the GI system, the lungs, diaphragm, and even the brain (ihs.gov) The Center For Endometriosis Care (CEC) even tells us that endo creates an inflammatory response within the body. Implants secrete their own hormones and prostaglandins making for a constant state of inflammation. These implants respond to hormonal fluctuations throughout the menstrual cycle and as a result 'bleed', the problem is the blood has no place to exit, this makes for severe inflammation and irritation to nearby organs.
March is International Endometriosis Awareness Month. I wrote this post and shared my story to help get awareness out there. I realize it's still February, but getting the info and awareness out there just a couple weeks before the month even begins is important. Many people don't even know what endometriosis is or they think they know what it is, but really don't know what it truly is. I know there are women out there right now who are going through some of the same things I mentioned in this post. I want them to know they aren't alone and while there may be no definitive cause or cure, there is hope. I have heard way too many stories of women that knew someone who had endo and they were fine, I have even been told by other fellow endo warriors that they had it and are now just fine.. endo affects everyone differently, depending on what stage the disease is and just how deep the disease goes. I strongly encourage you to wear your yellow (the color for endo awareness and support is yellow) and show your support for the millions of women who suffer every day and will continue to live the rest of their lives with this horrible disease.
For more information regarding endometriosis and the worldwide Endo March which will be held in Washington DC on March 28, 2015, click here
I continued on birth control pills for another 6-7 years, the pain let up a little bit, but I knew there was still something not quite right. One of my rock bottom moments in this journey came to me when I was a college student working two jobs. I was on my way to work one day when I had to pull over due to unbearable pain. I ended up calling my boss who ended up calling an ambulance for me. I was taken to the hospital where I was asked a lot of questions about my pain, how long I had been experiencing it, and if I was sexually active. After questioning, I was quickly given the diagnosis of pelvic inflammatory disease (PID) most often caused by an STD. The ER physician simply took my symptoms, my age, and the fact that I was sexually active and gave me that diagnosis. I was given three different antibiotics and instructed to take them all before I could be released. The saddest part, all cultures to check infection which would lead to PID all came back negative, I had no infection. I was still told it was PID, it was the only thing it could be. I left the hospital that evening still in pain and devastated no one, not even the ER was taking me seriously. I was frustrated because I knew something more was going on and pumping my body full of unnecessary antibiotics was not going to solve the problem. A few months went by and I sought another opinion, this time from a female gynecologist. I thought perhaps she might understand a little bit more and be able to help me. Once again, it was another disappointment. She told me I fit some of the symptoms of a condition known as endometriosis, but I was far too young to have that (I was twenty years old at this time and had been suffering now for a total of 8 years). I continued to live in pain and started developing a pretty bad case of depression and anxiety, I was tired of being in pain and no one believing me or taking me seriously.
A year later, things started looking up. I married the man of my dreams and soon after we began talking about trying for a family. With my history of reproductive issues and ovarian cysts, we weren't sure if conception would be difficult, so we thought it was best to begin trying. Several cycles went by with no positive pregnancy test, this really came as no surprise. After many failed attempts and a miscarriage, we sought the help of an OBGYN. I decided I wouldn't even bring up my chronic pelvic pain or the fact my cycles were unbearable, I would stick to just getting help to have a baby. In our infertility consult, my doctor started asking me if I ever had any pain with cycles. I was honest and told him I had quite a bit of pain, but many doctors assured me it was normal. I also told him about the diagnosis of PID I was given a few years prior. He strongly disagreed and started mentioning the strong possibility of endometriosis. This was the second time in my life now I had heard about endometriosis, or what I eventually became to know as 'endo'. My main goal was to get pregnant, so he came up with a treatment plan to try and achieve successful conception and pregnancy. Six months later and after many injections, tests, and hormones, we conceived a precious baby boy.
After the birth of our son, endo was the last thing on my mind, that is, until my cycles resumed. My cycles came back very quickly postpartum along with that familiar excruciating pain. Five months later, I developed a large blood filled ovarian cyst that needed to be surgically removed. I had a laparoscopy to remove the cyst and during surgery multiple areas of endo were found and burned off. I was diagnosed with Stage I-II endo, which was mild. The centerforendo tells us that there are four stages of endometriosis: I: minimal II: mild III: Moderate IV: Severe. Finally, finally I had my answer to all the years of pain, and finally I had hope, or at least I thought I did.. My surgeon had burned off all of the visible areas of endo, but strongly recommended I go on Lupron to prevent re-growth of more endo. He also suggested if we wanted more children, we should try to get pregnant again immediately. We had a six month old at the time, we were in no way wanting to get pregnant again or put my body into a medical menopause with Lupron. We decided to not do anything, we would just wait it out.
It turns out, God had other plans for us. We ended up conceiving a second precious baby boy just two months later. The pregnancy was full of complications, but we ended up delivering a healthy term baby boy. After the birth, once again, my cycles resumed quickly and this time with a vengeance. I was so thankful I had two amazing healthy children, yet I couldn't enjoy them, once again, depression and anxiety started to consume my life. No one understood what I was going through, even I didn't understand.. I thought my surgery to burn off all endo solved everything. I was confused and frustrated as to why I was in even more pain than I had ever been in my life, even before the surgery. I started to isolate myself from others. Most friends I had eventually stopped asking me to do things or to have play dates because my answer was always the same 'no'. The majority of the month was spent just trying to get through each day and take care of myself, let alone two small children. I was embarrassed, lonely, and in a huge amount of physical and emotional pain. Along with the near constant pelvic pain, I started developing some pretty bad GI symptoms and started losing weight as pretty much everything I was eating I was having some sort of GI reaction to. I sought the help of many doctors who all told me I had irritable bowel syndrome (IBS), a hormonal imbalance, and anxiety. It turns out, many women are given this diagnosis, as endo can create many symptoms similar to IBS ( http://www.centerforendo.com/articles/bowel.htm) Obviously, no one could help me.. so I decided to start doing tons of research to try and find someone who could. I had to get my life back, too many days were being spent wasted. I eventually found quite a few resources and an amazing support group on Facebook, Nancy's Nook. It was through that virtual support group where I really came to learn about excision surgery. I felt that seeking out an excision specialist would be my best bet. I continued to do a lot of research on excision surgery and the specialists that were available in the United States. There were many excision specialists, but all of them were so so far away or didn't accept my insurance, so I decided excision surgery wouldn't be an option at this time and I would just have to wait it out.
The summer of 2014 proved to be my most trying time yet. I really didn't things could get any worse, but I was wrong, I was very wrong. My husband was gone on another deployment and we had recently been given some pretty serious news regarding my oldest child and his health. I was taking him to doctor appointments and therapy appointments nearly every day and trying to take care of our one year old as well. It was during this time that my symptoms went from 'really bad' to 'I can't do this anymore' . Performing activities of daily living, walking, and even going to the bathroom were a huge task for me and excruciating. It got to the point where I would have anxiety attacks every time I would have to use the bathroom because I knew the pain that would come with it. I was so sick and tired of living like this and not being able to be 100% for my kids. Once again, I tried a new OBGYN in my local area. I ended up seeing him multiple times in a span of just a couple months. At first, with all my other symptoms, he felt there was more going on and sent me to an endocrinologist and neurologist to rule other things out. Little did I know, but at that time, my endo and another condition I knew nothing about, was wreaking havoc on my whole body, causing severe symptoms all throughout my system. I was told that my high stress levels were just making my endo flare really bad, it would get better when I got my stress levels under control. While I really wanted to believe that stress was just causing an increase in symptoms, I didn't fully believe it. It wasn't until an evening last fall that I knew things were getting critical. I was so weak I could barely walk around, let alone take care of my boys, I was in so much pain that I would just lay on my couch with a heating pad while I had the boys gated in a separate room. I was severely nauseous, I had no appetite, my heart constantly pounded, and I was dizzy. I couldn't even get down on the floor to play with my boys anymore, I had reached my breaking point. I wanted to be the mama to my boys that I never could be before, my husband would soon be returning and I wanted to be the wife that I never could be before, I wanted to be better for everyone, but also for myself. I was tired of suffering and tired of seeing the ones I love suffer all because I couldn't give my all.
I started researching again, there had to be someone out there that could help me, there just had to be. Looking back, all the sleepless nights spent on my floor with a heating pad and chamomile tea were a huge blessing, not only did I get tons of research done and become even more educated on endo, but I could chat with other women in my endo FB group that really understood what I was going through. Talking with them and reading their stories really gave me hope, but most of all, it made me feel validated, what I was going through and the every day suffering was real and I wasn't alone. It was at this point that endo really came to be my identity. I had let the disease take so much control over me, I was now endo. It was all I knew.
All of my research proved to be successful in finding an excision specialist semi close to me. I had finally found someone! I was elated to say the least. I ended up finding a specialist in Minneapolis, MN. I found out he took my insurance and made a consult for just a couple weeks later. The consult went well and I had so much hope! I was in awe that I would finally be receiving excision surgery, "the gold standard in treating endometriosis" ( centerforendo.com) . Surgery day finally came and my specialist spent 3 1/2 hours excising various areas of endo, including deep endo in the rectum. He also ended up cutting out endo behind both ovaries, on the uterosacral ligaments, behind the cervix, and the rectosigmoid part of the colon. Adhesions were taken down from my bowel that was partly attached to my pelvic sidewall and my ovaries were suspended to prevent any adhesions from forming. My surgeon was amazing, he has a huge amount of compassion for his patents, and he really put me at ease. He is still keeping in touch with me, checking up on me to see how I am doing one month post op. He spent nearly thirty minutes with my husband after he performed my surgery just to go over with him everything he found and cut out along with pictures to show just exactly what he did. He explained that the places where endo was found, particularly deep endo in the rectum was the reason for my 'IBS' symptoms. The disease went so deep, he had to cut down to nearly the muscle. He couldn't believe all the disease that had been missed from my previous surgery two years prior. His prognosis as far as my endo goes is quite good, he feels he has excised every bit of endo that he could see.
Recovery has not been easy, certainly harder than what I thought it would be, but I still believe there is hope. I am still in the 'wait and see' part to determine whether or not the surgery will have been a success for me as far as pain goes and better quality of life. Unfortunately, we do know that not all pelvic pain will be gone due to a newly found diagnosis of adenomyosis during the surgery process. While I can't say whether I am 'cured' or not as there really is no 'cure' for endo, I have great hope and faith that my life will be different. I was told and I am still being told that recovery from excision is a process, once surgical and internal incisions heal, then comes months of pelvic physical therapy. It really pains me that my children see the struggles I have been going through, but my hope is that they see their mama as someone who perseveres and never gives up, I especially want to set that example for my oldest. The eight scars that remain on my abdomen from my endo surgeries go far less deep than the scars inside. Endo can destroy a woman's whole life, a whole family. Not only can it rob a woman of her fertility, but for the women who do end up having children, it robs them of the precious time with those children that they longed and prayed so hard for. No, endo does not kill.. the body that is. But it does kill the spirit. We need so much more awareness of this disease, many many women go years with suffering before they are diagnosed, this can have a huge psychological impact. More info on why it takes so long for endo to be diagnosed and the psychological impacts that can develop can be found here. I went almost 10 years before I was diagnosed, but there are women who have gone much longer than that and its not okay. If I am fortunate enough to ever have another child, and if this child is a girl, I fear I will pass this disease onto her. While endo is no legacy I would ever want to leave behind, I know one thing for sure, she will not be one of those women who go years with suffering without being diagnosed and treated. I will be her biggest advocate and support, which is what all women with endo need and deserve. Not only do we need support but encouragement, education, and to get the word about endo out there even more. I think many people keep this disease behind closed doors because its a 'menstrual' disease and can come with some quite embarrassing symptoms such as pain with intercourse and pain and difficulty with bowel movements (http://www.endometriosisassn.org/endo.html). The fact is, endo isn't necessarily only a reproductive disease. Endo implants can attach and grow outside of the reproductive system: the GI system, the lungs, diaphragm, and even the brain (ihs.gov) The Center For Endometriosis Care (CEC) even tells us that endo creates an inflammatory response within the body. Implants secrete their own hormones and prostaglandins making for a constant state of inflammation. These implants respond to hormonal fluctuations throughout the menstrual cycle and as a result 'bleed', the problem is the blood has no place to exit, this makes for severe inflammation and irritation to nearby organs.
March is International Endometriosis Awareness Month. I wrote this post and shared my story to help get awareness out there. I realize it's still February, but getting the info and awareness out there just a couple weeks before the month even begins is important. Many people don't even know what endometriosis is or they think they know what it is, but really don't know what it truly is. I know there are women out there right now who are going through some of the same things I mentioned in this post. I want them to know they aren't alone and while there may be no definitive cause or cure, there is hope. I have heard way too many stories of women that knew someone who had endo and they were fine, I have even been told by other fellow endo warriors that they had it and are now just fine.. endo affects everyone differently, depending on what stage the disease is and just how deep the disease goes. I strongly encourage you to wear your yellow (the color for endo awareness and support is yellow) and show your support for the millions of women who suffer every day and will continue to live the rest of their lives with this horrible disease.
For more information regarding endometriosis and the worldwide Endo March which will be held in Washington DC on March 28, 2015, click here
Wednesday, January 7, 2015
Birthdays: So bittersweet!
Today marks 3 years since the birth of our first child. I remember praying and praying for two pink lines, I wanted to be a mama so bad! When the day finally came, and my husband and I held this precious gift from God, my thoughts were that life couldn't get any better. I remember bringing him home and not knowing what to do with him, I remember asking my husband "so, now what?" Haha, it's the truth! A few months went by and I started getting the hang of it all, at least I thought so 😉 Before we knew it, we were about to be celebrating his first birthday. I recall tears streaming down my face as I put my baby boy to bed on the eve of his first birthday, telling myself he will never be one ever again. Now I was about 20 weeks along in my pregnancy with his brother at this time, so I'm sure hormones played a role, but birthdays are just so bittersweet for me and are a great reminder to try and cherish all the days we can with our littles.
I find it especially bittersweet as each year goes by, as Eli gets a little older, his age no longer masks his Autism, he still cannot look at me and say "Hi" let alone "Hi mom" he can't tell us he loves us, he can't tell us anything. He doesn't even understand that today is his birthday, he does however LOVE the fact he gets cake, extra IPad time, and the day off from his therapies. His first year of life was very exciting for him as he gained a baby brother, his second year of life was very memorable as he received his diagnoses, I'm hoping his third year brings about a lot of improvement and progress with his therapies, and I'm praying this is the year he will begin to actually speak, I'm hoping I'll hear him say "hi mom!" As I said good night to him last night, I thought about this past year and everything, not just we, but he, had been through. He continues to amaze me every single day, while he can't speak to us, he does give us hugs and other little gestures to let us know he loves us. He enjoys the little things in life, I can't imagine how frustrating it is to not be able to talk, to tell someone how you feel, yet he still walks around every day with a smile on his face. When I prayed for a baby, I had no idea just how wonderful and precious of a gift that baby would be, he has changed my life in so many ways, but most importantly, he has taught me how to be a mother and shown me that love really needs no words. This little guy has really taught me so many things about myself I would have never known if not for him coming into our lives.
Happy birthday precious one, you have touched and continue to touch our lives more than you could ever know. We love you!
I find it especially bittersweet as each year goes by, as Eli gets a little older, his age no longer masks his Autism, he still cannot look at me and say "Hi" let alone "Hi mom" he can't tell us he loves us, he can't tell us anything. He doesn't even understand that today is his birthday, he does however LOVE the fact he gets cake, extra IPad time, and the day off from his therapies. His first year of life was very exciting for him as he gained a baby brother, his second year of life was very memorable as he received his diagnoses, I'm hoping his third year brings about a lot of improvement and progress with his therapies, and I'm praying this is the year he will begin to actually speak, I'm hoping I'll hear him say "hi mom!" As I said good night to him last night, I thought about this past year and everything, not just we, but he, had been through. He continues to amaze me every single day, while he can't speak to us, he does give us hugs and other little gestures to let us know he loves us. He enjoys the little things in life, I can't imagine how frustrating it is to not be able to talk, to tell someone how you feel, yet he still walks around every day with a smile on his face. When I prayed for a baby, I had no idea just how wonderful and precious of a gift that baby would be, he has changed my life in so many ways, but most importantly, he has taught me how to be a mother and shown me that love really needs no words. This little guy has really taught me so many things about myself I would have never known if not for him coming into our lives.
Happy birthday precious one, you have touched and continue to touch our lives more than you could ever know. We love you!
Subscribe to:
Posts (Atom)