Saturday, April 13, 2019
It’s okay not to be okay
As I’m writing this I have the window open because I’m hot and the heating pad stretched across my abdomen because I’ve had a flare so bad I’m hunched over and getting the ever so familiar Edward scissor hand pain to my lower body. These flare days have been more frequent lately and it has really taken a toll on my mental health that’s for sure. Let’s face it, when your stomach is bloated and you are tired you don’t feel attractive at all. I feel like a potato and with that whole look, it’s made me feel disgusting. Total mood killer for sure. With that said I’ve tried to push it all aside and have gotten back into working out to try and boost something. I also reached out to a therapist which is so desperately needed lately. The one thing I’m not embarrassed to say is that it’s okay not to be okay and it’s okay to put yourself first when you fall down. I think this all stemmed from finding out that I’m having yet another surgery and the burden that falls on my back. I’ve put on a brave face but when you are faced with another battle yet again it become draining. I’ve faked a smile more times then I can count and hopefully by talking through it, I can work on me. Trust me I am blessed, I have a roof over my head, a good support system, and of course an incredible boyfriend that I ask myself everyday how am I deserving of all this. But there are those dark days that follow me and when you add pain to the mix it can really mess with your head. I have another 4 months until surgery so until then, I’m going to find the person I’ve been missing.
Tuesday, March 12, 2019
Where it all began
Seeing as it's Endometriosis Awareness Month I will take you back to where it all began for me and why awareness is more than a month, it's 365 days a year for me.
I was 11/12 when I first started my period. All I know is that I was very young and I remember sitting on the toilet freaking out because I was alone and my mom was out walking the dog and I did not want to move because I didn't know what was happening. I went to Catholic school so they didn't get into the real deal about periods so I was a bit freaked out. I now transitioned to become a woman or whatever they say when you get your period back then. My periods were like an out of body experience for me because the pain was indescribable and unbearable. The only thing that helped with the pain was to sit still or rock back and forth on my bed. It wasn't until I was about 15 when my pediatrician put me on birth control pills because it's normal for this pain and it only happens once a month for a week. Well, I bled longer than a week and the pain continued, I went from various types of birth control to midol to naproxen. There was a time when I was 16 when my pediatrician said that I was mental. I didn't even know that until years later when I was getting my medical records and reviewing them I saw her notations.
High School was a constant blur for me, when I did go. I was never on time and I was always late because the pain was so bad in the morning my stomach hurt all the time. That's when the doctor said I had IBS and I was lactose intolerant, which now I know wasn't the case but it was funny because I could eat ice cream like a champ but yet the doctor just knew better I guess. Come time for my senior year I almost did not graduate because I had more absences than actually being in school, and I passed literally by the grace of the good lord.
After high school I found an OBGYN because I thought I was a little too old to be seeing a pediatrician. So I found an office downtown and met with my first doctor who played the birth control game except this time she made me go on a continuous birth control pill which she said you won't get your period. Two months into it I had my period for almost a month. It wasn't until she became frustrated that she insisted I have ablation for suspected endo. Endo what? well she never got into details about endo but she said I would feel a whole lot better. Surgery happened and I felt better for all of two months. The pain came back to the point where I was getting dizzy and wanted to pass out. There were days that I spent in bed because I didn't want to move because if I did move i'd have pain. The doctor told me there wasn't much more she could do but there is this drug called lupron and the only thing is you would have to take vitamins with it because some of her patients had some 'minor' side effects with it. What she didn't say is that some of these side effects were hair falling out, teeth falling out, joint pain, migraines, etc... (I did my research on lupron after her talk). She wrote me a prescription for it and told me to write the date on it when I was ready for it. That was the last time I saw her.
I found yet another doctor, this time in Boston. I thought all would be well because it was in a center for infertility. We played yet again the birth control bingo, then she suggested to take a surgical look inside for endometriosis and place an IUD in surgically. Her plan seemed okay so I went again for surgery. She mentioned that I would not bleed with an IUD and the pain wouldn't be too bad. Well, that was temporary yet again. Atleast this time the doctor gave me a stage for endo and it was stage IV, which in the endo world you could have just as much pain in stage I as you do in Stage IV. So like clockwork, this doctor pushed lupron as well. And like clockwork I walked out frustrated again.
From the age of 12 until my second surgery at 23/24 I went through 4/5 doctors and 1 therapist. I then turned to social media in frustration and that's when I learned the difference between ablation and excision. My first two surgeries were ablation where they burn the tissues, and what I didn't realize at the time is when you burn something it comes back and heals. That is what the uneducated doctors did to me.
It wasn't until my mid twenties that I found a doctor that took the time to listen and actually knew what he was talking about. I had a 7 hour excision surgery with him, and unfortunately the pain did return but it was already mentioned prior that if the pain did return it was due to suspected adenomyosis which is endo inside the uterus. I had my hysterectomy about a year after my excision surgery.
Two years later, I ended up having another excision surgery because my ureter was bent like a swans neck and embedded in the disease, this was done by another excision surgeon which I do not regret but just wished the guy had a little more bedside manner.
Now here I am working on a three day flare up, last night I almost passed out in pain, and I am awaiting my next excision, the choice was not easy and my doctor told me it was my only option at this point because we tried everything. I know deep down that if I didn't have two ablation surgeries and just had excision the first time that I wouldn't be where I am now. This was no fault of my own but the fault of two doctors that were uneducated. I never would've thought that I'd be facing this all over again at 33. My body is failing me yet again but my mind is a lot stronger than it has been in the past. To live in a body that is constantly trying to bring you down is mentally exhausting.
To have people judge you because you are sick, and to have people not take the time out to understand is draining for sure. There is no magic cure or potion for this disease. It can be invading one organ or some other organ, or it could just be sitting somewhere else. The only way to get rid of it is to cut it out and it isn't an easy task. This disease effects 176 million women worldwide. The cost of healthcare for someone with endo is $70 billion a year. There are $2,000,000,000 just for drugs that control pain but there is limited funding to research the disease. I could go on and on about it but this is real talk. My story is just a glimpse of how it is. I didn't even get into heavy details about it.
So this is where it all began to where it is now.
I was 11/12 when I first started my period. All I know is that I was very young and I remember sitting on the toilet freaking out because I was alone and my mom was out walking the dog and I did not want to move because I didn't know what was happening. I went to Catholic school so they didn't get into the real deal about periods so I was a bit freaked out. I now transitioned to become a woman or whatever they say when you get your period back then. My periods were like an out of body experience for me because the pain was indescribable and unbearable. The only thing that helped with the pain was to sit still or rock back and forth on my bed. It wasn't until I was about 15 when my pediatrician put me on birth control pills because it's normal for this pain and it only happens once a month for a week. Well, I bled longer than a week and the pain continued, I went from various types of birth control to midol to naproxen. There was a time when I was 16 when my pediatrician said that I was mental. I didn't even know that until years later when I was getting my medical records and reviewing them I saw her notations.
High School was a constant blur for me, when I did go. I was never on time and I was always late because the pain was so bad in the morning my stomach hurt all the time. That's when the doctor said I had IBS and I was lactose intolerant, which now I know wasn't the case but it was funny because I could eat ice cream like a champ but yet the doctor just knew better I guess. Come time for my senior year I almost did not graduate because I had more absences than actually being in school, and I passed literally by the grace of the good lord.
After high school I found an OBGYN because I thought I was a little too old to be seeing a pediatrician. So I found an office downtown and met with my first doctor who played the birth control game except this time she made me go on a continuous birth control pill which she said you won't get your period. Two months into it I had my period for almost a month. It wasn't until she became frustrated that she insisted I have ablation for suspected endo. Endo what? well she never got into details about endo but she said I would feel a whole lot better. Surgery happened and I felt better for all of two months. The pain came back to the point where I was getting dizzy and wanted to pass out. There were days that I spent in bed because I didn't want to move because if I did move i'd have pain. The doctor told me there wasn't much more she could do but there is this drug called lupron and the only thing is you would have to take vitamins with it because some of her patients had some 'minor' side effects with it. What she didn't say is that some of these side effects were hair falling out, teeth falling out, joint pain, migraines, etc... (I did my research on lupron after her talk). She wrote me a prescription for it and told me to write the date on it when I was ready for it. That was the last time I saw her.
I found yet another doctor, this time in Boston. I thought all would be well because it was in a center for infertility. We played yet again the birth control bingo, then she suggested to take a surgical look inside for endometriosis and place an IUD in surgically. Her plan seemed okay so I went again for surgery. She mentioned that I would not bleed with an IUD and the pain wouldn't be too bad. Well, that was temporary yet again. Atleast this time the doctor gave me a stage for endo and it was stage IV, which in the endo world you could have just as much pain in stage I as you do in Stage IV. So like clockwork, this doctor pushed lupron as well. And like clockwork I walked out frustrated again.
From the age of 12 until my second surgery at 23/24 I went through 4/5 doctors and 1 therapist. I then turned to social media in frustration and that's when I learned the difference between ablation and excision. My first two surgeries were ablation where they burn the tissues, and what I didn't realize at the time is when you burn something it comes back and heals. That is what the uneducated doctors did to me.
It wasn't until my mid twenties that I found a doctor that took the time to listen and actually knew what he was talking about. I had a 7 hour excision surgery with him, and unfortunately the pain did return but it was already mentioned prior that if the pain did return it was due to suspected adenomyosis which is endo inside the uterus. I had my hysterectomy about a year after my excision surgery.
Two years later, I ended up having another excision surgery because my ureter was bent like a swans neck and embedded in the disease, this was done by another excision surgeon which I do not regret but just wished the guy had a little more bedside manner.
Now here I am working on a three day flare up, last night I almost passed out in pain, and I am awaiting my next excision, the choice was not easy and my doctor told me it was my only option at this point because we tried everything. I know deep down that if I didn't have two ablation surgeries and just had excision the first time that I wouldn't be where I am now. This was no fault of my own but the fault of two doctors that were uneducated. I never would've thought that I'd be facing this all over again at 33. My body is failing me yet again but my mind is a lot stronger than it has been in the past. To live in a body that is constantly trying to bring you down is mentally exhausting.
To have people judge you because you are sick, and to have people not take the time out to understand is draining for sure. There is no magic cure or potion for this disease. It can be invading one organ or some other organ, or it could just be sitting somewhere else. The only way to get rid of it is to cut it out and it isn't an easy task. This disease effects 176 million women worldwide. The cost of healthcare for someone with endo is $70 billion a year. There are $2,000,000,000 just for drugs that control pain but there is limited funding to research the disease. I could go on and on about it but this is real talk. My story is just a glimpse of how it is. I didn't even get into heavy details about it.
So this is where it all began to where it is now.
Saturday, February 16, 2019
The struggle is real
It is never easy to just calm down and take a breath even when my Apple Watch goes off constantly reminding me to breathe every hour. I am so overwhelmed lately because I’m trying to do it all between being alone on my shift and it’s been so crazy and trying to get my homework done that I’m ready to have a breakdown. I’m the type of person that puts 110% into everything even if it goes unnoticed because that’s just who I am. I don’t work for the accolades, I do it because I hustle. But even with all of that I’ve started getting anxious again. Like right now I can feel my heart racing and I can barely catch my breath. Add that to my list this week of issues. The struggle is real. It’s a constant battle every single day, and I think what adds to my anxiety is having to explain myself and explain this disease. Some people complain they have headaches or they just don’t feel well, well guess what your headaches go away. Think of endometriosis as the flu, but this flu is constant and there is no medicine for it. Think of that fatigue, every single day. Think of the fever and pain every day. That’s endometriosis among various other symptoms. Think of having something inside your body sticking to other organs and when it does it causes havoc on your entire system. There are days I feel like throwing in the towel and giving up. Especially because now it’s messing with my GI system. My entire GI system is inflamed and I can’t bare to have another surgery yet alone afford another surgery, but I can’t live like this. I can’t. I’ve gone through this from the age of 11 just think about that for a minute. I’m sure you would feel the same way. And when people say they are sorry, please don’t. I don’t want your sympathy. I’ve gotten this far alone and it’s just another stupid hurdle to jump. What I want is for those that can’t say anything nice to keep their opinions to themselves and those that want to care then don’t feel sorry just understand that this is a battle with no ending. This disease could kill me because it just is like a weed and it just keeps growing. So even though I fake a smile and pretend life is amazing, because yes I am blessed to still be here, but just know that smiles hide the pain. I’m not sure how much more I can take but just know this, I’m trying and the struggle is real.
Tuesday, January 22, 2019
No endo sister left behind
It wasn't until a few years ago that I began to really use my voice when it came to this disease. I really wanted those that were uneducated to understand, and I wanted those that had endometriosis to know that they weren't alone and to seek out true excision specialists. I was really honored and blessed to have spoken to school nurses last year on behalf of endowhat, it was a bit scary to be in a room full of strangers but after I spoke it made me want to change the world. So I tried reaching out for an upcoming event. I saw that a few people were talking on a panel and I was wondering well why not me? Well that blew up in my face because I was tossed aside. That honestly brought back so many memories.
When I was in middle school, I was bullied. I honestly had all of one or two friends at the most. No one stuck up for me. I was called penguin because when I walk one foot goes out a bit, not like I waddle but I thought it was completely normal. I was called banana because of the yellow winter jacket I wore one winter. I tried so hard to fit in and make friends but to be honest no one wanted to be friends with me back then. I feel like that rejection I just had brought me back. I just don't understand why I am the black sheep of this community. At the event I attended last year I spoke with many women wishing that they had someone advocating for them and I even touched base with a mom who wants me to help her daughter.
I may not have my name on billboards, I may not be rich, I also may not have a huge following but if it’s one thing I’m good at and one thing I deserve it is to be heard. And if it’s not at the summit because I was shot down then that’s fine their loss. I’ll get my voice heard some other way. Honestly it just makes me want to up my game even more. You can break me and you sure as hell cant make me feel worthless. Not going to happen. This community shouldn’t shun people they should welcome everyone. That’s my mission. No endo sister left behind. So if you are feeling alone I’m here. I will listen.
When I was in middle school, I was bullied. I honestly had all of one or two friends at the most. No one stuck up for me. I was called penguin because when I walk one foot goes out a bit, not like I waddle but I thought it was completely normal. I was called banana because of the yellow winter jacket I wore one winter. I tried so hard to fit in and make friends but to be honest no one wanted to be friends with me back then. I feel like that rejection I just had brought me back. I just don't understand why I am the black sheep of this community. At the event I attended last year I spoke with many women wishing that they had someone advocating for them and I even touched base with a mom who wants me to help her daughter.
I may not have my name on billboards, I may not be rich, I also may not have a huge following but if it’s one thing I’m good at and one thing I deserve it is to be heard. And if it’s not at the summit because I was shot down then that’s fine their loss. I’ll get my voice heard some other way. Honestly it just makes me want to up my game even more. You can break me and you sure as hell cant make me feel worthless. Not going to happen. This community shouldn’t shun people they should welcome everyone. That’s my mission. No endo sister left behind. So if you are feeling alone I’m here. I will listen.
Wednesday, January 2, 2019
The beginning of a new year
Currently emptying my brain of all of last year and moving forward. It's always good to de-clutter once in a while. I do wish that I could have at least a month without an endo flare but we are two days into the year and I am sitting here typing with my heating pad on Aruba hot. I went off keto from X-Mas until yesterday so I am sure that played a huge part. Just went back on today so I am hoping my body will be back to normal. This disease is so bizarre and it's just like an endless tunnel that leads to nowhere. I can't wait for the summit coming up to figure out why two years later my body is failing me yet again. Why is it always around the two year mark that my symptoms come back. It's truly a mystery. And here I was trying to de-clutter but I guess this sticks around. Which is funny because endometriosis does stick itself all over the place so how fitting. I will say that diet does alleviate some of the symptoms, for me at least. When I was doing the keto thing for the last year I lost 20 lbs. With that, I lead a normal routine typically ate the same things daily and I actually had less flares. So I am hoping that I can keep the flares at bay by going back on the diet. It truly is a lifestyle change but you find a way to adapt. I am looking forward to this year, hopefully more changes coming my way. My goal is to find lots of new things and put my degree to use. I want to see the world and do a little soul searching along the way.
Onward!
Onward!
Monday, December 10, 2018
2018 and such
It has been a little bit since I have posted last. I have been taking some time to reflect on everything that has happened this year and prior years. I don't think I have really sat back and realized how much I have been through and to see where I am now and how I am still here alive and well. I honestly am grateful and blessed, even through the pain and heartache. I have come a long way.
The once girl that was afraid to speak up because I was afraid, is now the girl that stood up in a room full of people sharing her story to a room full of strangers. The girl that was afraid to leave and walk away from relationships, is now the girl that knows what she wants and won't settle for less. There is so much more soul searching. Trust me I am not perfect.
Relationship wise, I used to think that when I was with someone and they cheated, lied, or verbally abused me and left me that I did something wrong, that it was my fault. It was never my fault. That's one thing I tell myself, that it was never my fault, and I should NEVER apologize for being me. So many times I said I was sorry when I did something wrong. So many times I blamed myself. Even recently, I focused on something so much that it took away from who I really was and I started to see myself fall back into the pattern of putting all my effort into someone that didn't mutually give me the same effort. I am glad that I shut that door. It wasn't easy and my heart broke a bit but, onward.
I think relationships are such a mentally draining thing for me. I hate dating, I constantly worry about the what ifs and being self conscious doesn't really help the matter. I am such an old soul that when I care about someone I put my heart and soul into it that when it blows up in my face, which it normally does, I become guarded and shut down. That is something I need to start working on. No matter what I am always me. 110%
So who knows what 2019 will bring, I am hoping to take it as it comes, and to be grateful for all that the good lord has given me. That's for sure. Here's to the almost end of another year, and to still being a bad ass Endo warrior.
The once girl that was afraid to speak up because I was afraid, is now the girl that stood up in a room full of people sharing her story to a room full of strangers. The girl that was afraid to leave and walk away from relationships, is now the girl that knows what she wants and won't settle for less. There is so much more soul searching. Trust me I am not perfect.
Relationship wise, I used to think that when I was with someone and they cheated, lied, or verbally abused me and left me that I did something wrong, that it was my fault. It was never my fault. That's one thing I tell myself, that it was never my fault, and I should NEVER apologize for being me. So many times I said I was sorry when I did something wrong. So many times I blamed myself. Even recently, I focused on something so much that it took away from who I really was and I started to see myself fall back into the pattern of putting all my effort into someone that didn't mutually give me the same effort. I am glad that I shut that door. It wasn't easy and my heart broke a bit but, onward.
I think relationships are such a mentally draining thing for me. I hate dating, I constantly worry about the what ifs and being self conscious doesn't really help the matter. I am such an old soul that when I care about someone I put my heart and soul into it that when it blows up in my face, which it normally does, I become guarded and shut down. That is something I need to start working on. No matter what I am always me. 110%
So who knows what 2019 will bring, I am hoping to take it as it comes, and to be grateful for all that the good lord has given me. That's for sure. Here's to the almost end of another year, and to still being a bad ass Endo warrior.
Thursday, November 1, 2018
Speaking out
The other day I was asked to speak as well as represent an organization that I stand by 100% and that is Endo What. I was so excited when Casey asked me to speak to school nurses. I am so grateful to her. Last year before my surgery and before I even met Dr. Seckin, I had to go for an MRI. Little did I know it would be a closed MRI and I was freaking out and nervous in general because of everything going on. Thankfully Casey was there for me and I’ve never even met her. What she does for this disease is incredible, especially someone that is battling so many obstacles herself. That’s why I jumped to the chance of stepping out of my comfort zone. I was glad I did.
As I stood in front of a roomful of people that had no idea who I really was, I was thinking to myself that here I am sharing my life with strangers. I had to stop myself halfway through my speech because I never really realized how much I’ve been through and how much I’ve lost and how far I’ve come. When I went off stage, I went back to the table I had set up and a woman came up to me in tears saying that she knows what I went through because she had doctors tell her she couldn’t conceive. It took rounds and rounds of IVF and she finally had her miracle baby. Then years later she the doctor said she won’t be able to have any more kids because the endo was that bad. She didn’t think anything of it and come to find out she was pregnant with her second child. Our stories are different but we share the same pain.
Another woman came up to me because she said her daughter has endometriosis as well as rheumatoid arthritis and she felt bad because she wished she listened to her daughter sooner. I told her that it doesn’t matter because she was listening now and that she’s a great mom for doing whatever she can for her. I wanted to cry because hearing about her daughter, I know what a hard road it will be for her and the pain she’s going through. I am so glad she was able to reach out so her daughter can get the proper care she so desperately needs.
Here I was going there trying to get the word out to school nurses to get kits for their schools and I was listening to all of these woman that has gone through so much.
I am pasting my speech because I already shared it with strangers so why not post it here...
As I stood in front of a roomful of people that had no idea who I really was, I was thinking to myself that here I am sharing my life with strangers. I had to stop myself halfway through my speech because I never really realized how much I’ve been through and how much I’ve lost and how far I’ve come. When I went off stage, I went back to the table I had set up and a woman came up to me in tears saying that she knows what I went through because she had doctors tell her she couldn’t conceive. It took rounds and rounds of IVF and she finally had her miracle baby. Then years later she the doctor said she won’t be able to have any more kids because the endo was that bad. She didn’t think anything of it and come to find out she was pregnant with her second child. Our stories are different but we share the same pain.
Another woman came up to me because she said her daughter has endometriosis as well as rheumatoid arthritis and she felt bad because she wished she listened to her daughter sooner. I told her that it doesn’t matter because she was listening now and that she’s a great mom for doing whatever she can for her. I wanted to cry because hearing about her daughter, I know what a hard road it will be for her and the pain she’s going through. I am so glad she was able to reach out so her daughter can get the proper care she so desperately needs.
Here I was going there trying to get the word out to school nurses to get kits for their schools and I was listening to all of these woman that has gone through so much.
I am pasting my speech because I already shared it with strangers so why not post it here...
Good Evening, my name is Allison Monteiro and I represent 1 in 10 girls and women that have endometriosis. That is 176 MILLION women worldwide. Each of these women can go 8 to 10 years before actually being diagnosed. I was surgically diagnosed at 22. For me, that was 10 years that I suffered in excruciating pain, trying to get anyone I could in the medical field to listen to me. From numerous ER visits, to even having a doctor refer me to a mental health provider, saying the pain was all in my head. I wished that someone would’ve been there to not only help me but also advocate for me. I swear that if someone would’ve listened to me sooner, I wouldn’t of went through 6 total surgeries, one of them being a partial hysterectomy at 31 years old, leaving me without the ability to have my own children.
When I was in high school, I missed so many days of school because the pain was just too much for me to sit for 8 hours a day. When I did go to school and tried to leave early, the school nurse would tell me to lay down for a few minutes and take some Midol and go back to class because it was just a bad period. Endometriosis is not JUST a bad period, endometriosis is a debilitating, devastating disease that causes pain, infertility and organ dysfunction.
This is why I am here today, supporting and representing ENDOWHAT, because educating school nurses about this disease is so important. All of you are on the front lines of care. If my high school nurse knew about endometriosis and was able to help educate and support me, I can GUARANTEE it would’ve saved me from a lot of physical pain and suffering, and it would’ve been great to have someone that believed me,, listened to me, and was able to refer me to the help that I so desperately needed. Even just hearing the word endometriosis from a medical provider as a teenager would have led to me educating myself, and accessing resources sooner. I would have had so many more social, professional, and reproductive options available to me. Our organization strives to provide school nurses more resources so the next generation of girls that are suffering have more opportunities than we had.
If you have taken care of students who have had chronic period pain and felt overwhelmed when trying to help them, please stop by our table. Our organization is dedicated to providing more resources for school nurses so that the 1 in 10 girls and women that struggle with endometriosis are diagnosed sooner and can get the support they need to live their best lives.
Thank You
Subscribe to:
Posts (Atom)