It's been a long time coming, but I finally have a surgery date! On April 30th I will be undergoing a laporoscopic excision surgery to remove endometriosis from the outside of my uterus, ovaries and bladder and possibly from many other sites as well. During my last surgery endometriosis was confirmed to be found on my uterus, ovaries and bladder but this past year my symptoms have increased which causes us to believe that the endometriosis has spread to my bowels, colon, sciatic nerve and a variety of other small spaces. As sucky as it is to undergo surgery and have to deal with recovery; I am extremely excited for the possibility of my health improving. I know that because I have multiple chronic illnesses this surgery will not solve all of my problems. But I also know that there is a huge chance that my quality of life will improve greatly. I've made it a goal this year to talk more and spread awareness about my illness because people need to be informed; but the one thing I don't often talk about relating to my illness is how much affects me emotionally. It's hard to talk about being beaten down emotionally, espeically when it's something that is completely out of your control that is beating you down. Especially when it's your very own body that is spiraling you into depression, anxiety and self-loathing. March is endometriosis awareness month and I know that March is ending but I'd like to repost something that I posted on my instagram earlier this month. I posted an ecard that at first made me laugh a little then caused me to really think about how unfairly women with endometriosis and many other illnesses are treated. The ecard said: "I'm so happy I got this debilitating illness so I can stay in bed for the rest of my life instead of participating in society and making a difference," said no sick person ever.
First of all, I just had to laugh. But if you have a chronic illness, you know how true this is.
It is so frustrating to me when people assume that I have chosen the life I am living at this moment. People assume that I choose to work part-time, that I choose to live under my parent's roof, that I choose to "sleep in" all the time, that I choose not to be active and that I choose to live the life of someone who is chronically ill. But let me tell you; my heart breaks when I begin to think about all the things that I'm not able to do anymore. My heart breaks a little every time I realize that I won't be able to pursue a career until after multiple surgeries and pain therapy, when I wish I had a nice place of my own and felt independent, when I wake up in the morning feeling like I barely slept because I spent the night tossing and turning in pain and consumed with insomnia and anxiety of what my life consists of, when I make the effort to exercise and I end up curled in a ball on the bathroom floor passing bloodclots and writhing in pain. The chronically ill do not choose to live the life of someone who is chronically ill. We have no choice but to give life all we've got and take care of ourselves the best way we know how. So instead of saying to someone who deals with illness, "you're so lucky you get to stay home all day." Think about how it would really be to be ABLE to do the things that you take for granted each and every day. Maybe then, you will begin to see how it feels to be chronically ill.
So over the next month, I will be awaiting surgery and researching and ALSO, on a completely different note; I will be becoming an aunt! Which is so exciting. So this month is filled with positives for me. I know recovering isn't fun but there's always rain before a rainbow and I am SO ready for that rainbow.
Saturday, March 28, 2015
Thursday, March 12, 2015
endo is a bitch
If you've ever read my blog before, you know that I've been dealing with some unexplained pain over the past few months. This pain has changed and evolved to the point where my doctors now think that this pain could be caused by endometriosis.
The pain I was originally experiencing, I had no idea could be connected to endometriosis. But after a colonoscopy and endoscopy that came back with nothing to tell me other than I have Irritiable Bowel Syndrone; my internal specialist suggested that endometriosis may be causing my pain and the symptoms I was having. I never thought that endometriosis would cause digestive issues, acid reflux, strange bathroom habits (lets not go into too much detail there), etc. To me, Endometriosis pain had always been that agonizing, falling to the floor in fetal position, extremely intense mentrual-like pain. But I have since been informed that if endometriosis is to grow on the outside of the bowels, intestines, bladder, pelvic wall, etc. it isn't necessarily going to present in the same way. If it's on your bowels, it will affect your bowels, and cause pain that will make you assume it's a gastrointestinal issue. So, that's where we're at with this current pain.
It is now thought that my endometriosis is coming back, kicking and screaming and demanding to be seen. Which means, surgery is in order. Next Wednesday I have an appointment to book a laporoscopy to clean up the endometriosis on my uterus, ovaries and fallopian tubes. During this process, the bowels, intestines, bladder, etc. will also be inspected but not yet removed. Which is unforntunate because that means, there will most likely be a second surgery. That's another frustrating thing about endometriosis. Endometriosis is considered to be a gynaecological disease; therefore, a gynaecologist is usually the one to perform the surgery. But if the disease has grown onto organs that are not reproductive, it needs to be removed by a general surgeon or an endometriosis specialist (which are very hard to come by!).
Originally, I wasn't convinced that my pain was caused by endometriosis but over the last few weeks, I am now sure that endometroisis is causing this pain. *GRAPHIC DETAILS AHEAD* Because of the medication I am on to control Endometriosis (Visanne) I no longer get a monthly period; which means no cramps and no bleeding (awesome!!!). This medication has worked well for the past year. About three weeks ago I was laying in bed and out of nowhere, I was in excrutiating pain. It was like someone had flipped on a switch and it automatically turned on the endometriosis. This pain lasted about half an hour and then began to slowly die down, and I went upstairs to take some pain killers. I hadn't felt pain like this in over a year. I knew, it was endometriosis pain, it's a pain like no other. I went to bathroom and was shocked -- first, there was blood when I wiped which also hasn't happen in over a year. Next, *here's the graphic part* sorry * there was a blood clot in the toilet. Bright red, terrifying for someone who isn't supposed to have a period. I was too exhausted to worry about it at the time, so I went back to bed.
From that day on, every three to four days I experience the same agony. Sudden and intense. With no warning at all. In between these episodes, I am greeted with tugging and pulling sensations, a rippling pain deep inside my lower abdomen. And a constant fatigue that makes me want to sleep all day. I like to avoid taking painkillers as much as possible, but over the past week, I've taken them probably every single day. Prescription pain meds, that barely put a dent in the pain.
I considered going to the hospital; but going to the hospital and saying that you have endometriosis never turns out well. You're pumped full of drugs, poked and prodded at, stuck with needles and end up in even more pain. There are many things that could have causes this sudden outburst of pain; like a ruptured cyst, a torn lesion, tugging between two lesions or scar tissue building up, it could be anything. So for the next week, I'm going to hold on until I can book this surgery and hopefully get a little relief.
The pain I was originally experiencing, I had no idea could be connected to endometriosis. But after a colonoscopy and endoscopy that came back with nothing to tell me other than I have Irritiable Bowel Syndrone; my internal specialist suggested that endometriosis may be causing my pain and the symptoms I was having. I never thought that endometriosis would cause digestive issues, acid reflux, strange bathroom habits (lets not go into too much detail there), etc. To me, Endometriosis pain had always been that agonizing, falling to the floor in fetal position, extremely intense mentrual-like pain. But I have since been informed that if endometriosis is to grow on the outside of the bowels, intestines, bladder, pelvic wall, etc. it isn't necessarily going to present in the same way. If it's on your bowels, it will affect your bowels, and cause pain that will make you assume it's a gastrointestinal issue. So, that's where we're at with this current pain.
It is now thought that my endometriosis is coming back, kicking and screaming and demanding to be seen. Which means, surgery is in order. Next Wednesday I have an appointment to book a laporoscopy to clean up the endometriosis on my uterus, ovaries and fallopian tubes. During this process, the bowels, intestines, bladder, etc. will also be inspected but not yet removed. Which is unforntunate because that means, there will most likely be a second surgery. That's another frustrating thing about endometriosis. Endometriosis is considered to be a gynaecological disease; therefore, a gynaecologist is usually the one to perform the surgery. But if the disease has grown onto organs that are not reproductive, it needs to be removed by a general surgeon or an endometriosis specialist (which are very hard to come by!).
Originally, I wasn't convinced that my pain was caused by endometriosis but over the last few weeks, I am now sure that endometroisis is causing this pain. *GRAPHIC DETAILS AHEAD* Because of the medication I am on to control Endometriosis (Visanne) I no longer get a monthly period; which means no cramps and no bleeding (awesome!!!). This medication has worked well for the past year. About three weeks ago I was laying in bed and out of nowhere, I was in excrutiating pain. It was like someone had flipped on a switch and it automatically turned on the endometriosis. This pain lasted about half an hour and then began to slowly die down, and I went upstairs to take some pain killers. I hadn't felt pain like this in over a year. I knew, it was endometriosis pain, it's a pain like no other. I went to bathroom and was shocked -- first, there was blood when I wiped which also hasn't happen in over a year. Next, *here's the graphic part* sorry * there was a blood clot in the toilet. Bright red, terrifying for someone who isn't supposed to have a period. I was too exhausted to worry about it at the time, so I went back to bed.
From that day on, every three to four days I experience the same agony. Sudden and intense. With no warning at all. In between these episodes, I am greeted with tugging and pulling sensations, a rippling pain deep inside my lower abdomen. And a constant fatigue that makes me want to sleep all day. I like to avoid taking painkillers as much as possible, but over the past week, I've taken them probably every single day. Prescription pain meds, that barely put a dent in the pain.
I considered going to the hospital; but going to the hospital and saying that you have endometriosis never turns out well. You're pumped full of drugs, poked and prodded at, stuck with needles and end up in even more pain. There are many things that could have causes this sudden outburst of pain; like a ruptured cyst, a torn lesion, tugging between two lesions or scar tissue building up, it could be anything. So for the next week, I'm going to hold on until I can book this surgery and hopefully get a little relief.
Thursday, February 26, 2015
Ups + Downs + Answers + Questions
Living with chronic illness is a constant battle. Sometimes you feel like a warrior and sometimes you feel completely defeated; but either way, it's always uphill. There are moments of celebration when you have a pain free day or a test result that makes you smile, and there are moments of complete desolation.
Today I finally got back my test results from my colonoscopy and endoscopy biopsy. They were clear! Which means the inside of my bowels, colon and stomach look healthy and are free of polyps and ulcers, etc. Which is great! The weird part of that is, the pain that seems to be gastrointestinal-related, is still present. Every day. I was given the diagnosis of IBS (irritable bowel syndrome); which many people blow off and act like it's no big deal. The good thing about the diagnosis of IBS is that you know it isn't causing any structural or permanent damage to your organs, but unfortunately it can cause a lot of pain. IBS was explained to me like this, "The walls of the intestines are lined with layers of muscle that contract and relax in a coordinated rhythm as they move food from your stomach through your intestinal tract. If you have irritable bowel syndrome, the contractions may be stronger and last longer than normal, causing gas, bloating, and diarrhea. Or the opposite may occur, with weak intestinal contractions slowing food passage and leading to hard, dry stools."
Yeah, so IBS isn't exactly a walk in the park but I'm glad I at least have one answer and have ruled some more serious issues out. Although, the end is not yet near. Because the diagnosis of IBS does not cover all of my symptoms, more action is required. I also have Endometriosis (a disease mainly affecting to reproductive organs) and it has not been checked up on in about three years. Endometriosis can not be diagnosed or detected through an ultrasound but only through laparoscopic surgery. I was diagnosed with endometriosis when I was 17 but had been experiencing symptoms since the age of 12. Endometriosis, most people assume, can only affect the ovaries and uterus but this is far from true. My internal specialist suggested that the endometriosis may have spread and be growing on the outside of my bowels which could be causing a lot of my pain. Normally a gynaecologist would perform the laparosocpy for endometriosis but because the likelihood of the endometriosis growing on my bowels is high, the surgery needs to performed by a general surgeon.
So now, I'm awaiting a referal to a general surgeon to take care of my endometriosis and perform a general exploratory surgery! Yay! Surgery sucks, but getting answers is a positive step to be taking. From now until the surgery date, I am going to start keeping a journal of what I'm eating and drinking and what symptoms I have throughout the day. Hopefully, this will give me an idea of which foods/drinks trigger IBS flares and which ones help me to feel better. There's always a next step. If you are sufferinging from unknown illness, don't give up on trying to find an answer. There is one out there! Find a doctor that respects you and will listen and you will find the answers you need.
Today I finally got back my test results from my colonoscopy and endoscopy biopsy. They were clear! Which means the inside of my bowels, colon and stomach look healthy and are free of polyps and ulcers, etc. Which is great! The weird part of that is, the pain that seems to be gastrointestinal-related, is still present. Every day. I was given the diagnosis of IBS (irritable bowel syndrome); which many people blow off and act like it's no big deal. The good thing about the diagnosis of IBS is that you know it isn't causing any structural or permanent damage to your organs, but unfortunately it can cause a lot of pain. IBS was explained to me like this, "The walls of the intestines are lined with layers of muscle that contract and relax in a coordinated rhythm as they move food from your stomach through your intestinal tract. If you have irritable bowel syndrome, the contractions may be stronger and last longer than normal, causing gas, bloating, and diarrhea. Or the opposite may occur, with weak intestinal contractions slowing food passage and leading to hard, dry stools."
Yeah, so IBS isn't exactly a walk in the park but I'm glad I at least have one answer and have ruled some more serious issues out. Although, the end is not yet near. Because the diagnosis of IBS does not cover all of my symptoms, more action is required. I also have Endometriosis (a disease mainly affecting to reproductive organs) and it has not been checked up on in about three years. Endometriosis can not be diagnosed or detected through an ultrasound but only through laparoscopic surgery. I was diagnosed with endometriosis when I was 17 but had been experiencing symptoms since the age of 12. Endometriosis, most people assume, can only affect the ovaries and uterus but this is far from true. My internal specialist suggested that the endometriosis may have spread and be growing on the outside of my bowels which could be causing a lot of my pain. Normally a gynaecologist would perform the laparosocpy for endometriosis but because the likelihood of the endometriosis growing on my bowels is high, the surgery needs to performed by a general surgeon.
So now, I'm awaiting a referal to a general surgeon to take care of my endometriosis and perform a general exploratory surgery! Yay! Surgery sucks, but getting answers is a positive step to be taking. From now until the surgery date, I am going to start keeping a journal of what I'm eating and drinking and what symptoms I have throughout the day. Hopefully, this will give me an idea of which foods/drinks trigger IBS flares and which ones help me to feel better. There's always a next step. If you are sufferinging from unknown illness, don't give up on trying to find an answer. There is one out there! Find a doctor that respects you and will listen and you will find the answers you need.
Thursday, February 5, 2015
It's Been A While..
Well, it's been quite some time since I've wrote a blog post. That was not my intention, I promise. With the combination of stress and illness, I just have had no desire or energy to write. But I'm here now, and ready to spill. This past Monday, I finally had a colonoscopy and endoscopy done to check out my insides! I've been waiting to have these procedures done for months. No, it wasn't pleasant but it's definitely a beneficial step towards better health. On the downside, I don't get a full work-up of my results for another two weeks. All I know about the procedures thus far, is that there was nothing 'too serious that they could see' but I do know that some samples were taken from my stomach and intestines for biopsies. I'm praying that the biopsy results don't come back with anything too scary but at the same time, I need to know what's going on. So, after my results come back, if there is nothing that explains my pain over the last few months, I'll be booking a laparoscopy surgery to check up on my Endometriosis.
Endometriosis can be extremely frustrating; mainly because, you have absolutely no idea what it's doing to your body or where it's happening, until you're cut open. Which just sucks. It mean's fasting and bowel prep, laughing gas and having people poke and prod at you, waking up in pain and having weeks of best rest afterwards. I am overdue for a laparoscopy, my last one was almost four years ago now. That was when I was officially diagnosed with Endometriosis, although it was clear that I was suffering from it beforehand. As it has been four years since my last surgery, endometriosis has likely grown back. My Internal Medicine specialist suggested that if nothing comes up in my colonoscopy/endoscopy results, my recent pain might actually be caused by endometriosis.
The thing that confuses me about that is that my pain caused by endo has always been the same type of pain. I get menstrual pain (cramps) but more intense (very intense) and leg pain (feel's like a charlie horse or growing pains, or both combined). Once in a while, there's other things thrown in there but those are the main two symptoms I experience. The pain I've had lately, I never thought could be endo related. But my specialist explained to me that if endo were to grow (for example) on my bowels, the pain wouldn't necessarily present in the same way. It wouldn't feel like menstrual pain, it would probably feel more like heartburn, indigestion, intestinal inflammation, etc. Which is what I've been experiencing.
So lately, because of all of these discussions with my doctors and specialists; I'm really hating on endometriosis and wishing that there was more recognition of this horrible disease and the struggles it causes. March is endometriosis awareness month and I want to encourage everyone to represent your endo-warrior strength and spread the word!
The thing that confuses me about that is that my pain caused by endo has always been the same type of pain. I get menstrual pain (cramps) but more intense (very intense) and leg pain (feel's like a charlie horse or growing pains, or both combined). Once in a while, there's other things thrown in there but those are the main two symptoms I experience. The pain I've had lately, I never thought could be endo related. But my specialist explained to me that if endo were to grow (for example) on my bowels, the pain wouldn't necessarily present in the same way. It wouldn't feel like menstrual pain, it would probably feel more like heartburn, indigestion, intestinal inflammation, etc. Which is what I've been experiencing.
So lately, because of all of these discussions with my doctors and specialists; I'm really hating on endometriosis and wishing that there was more recognition of this horrible disease and the struggles it causes. March is endometriosis awareness month and I want to encourage everyone to represent your endo-warrior strength and spread the word!
Wednesday, January 21, 2015
Personal Connection vs. Wifi Connection
"The most desired gift of love is not diamonds or roses or chocolate. It is focused attention."
When I read this quote, I had one of those epiphany moments. I'm realizing how true it is that we desire focused attention; but the thing that really stands out to me personally, is how rare focused attention is these days. Focused attention is so rare that I fear being the center of someone's attention. When I'm in a group and I begin to tell a story or state an opinion and suddenly, all eyes are on me, I have a mini panic attack inside. All of those on me, listenting to what I'm saying.
Now a days, we are so used to having distractions. Mainly, our cell phones. Cell phones have so much packed into them now that you could be on your phone for hours without even realizing. I will be the first to admit, that I spend more time on my cell phone than I should. I know that. And I hate that it's true. It's funny how we always justify our time used on our cell phones and laptops. I'm not going to tell a lie and say that I could live life well without my laptop. I am absolutely a laptop addict. I check facebook daily, just because it has become so routine at this point that it's second-nature. I browse pinterest for inspiration for studying, the future, anything really. I write, I blog, I keep in touch with friends. I wouldn't say that spending a lot time on my laptop is necessarily a bad thing. It just really depends on what I'm doing. Sure, 5 hours of netflix isn't a wise use of my time. But for me, writing, which I do quickly and more efficiently on the computer, is theraputic for me. It helps me to develop my writing skills and to express myself. I think the same way about certain sites that I browse as well and blogs that I read.
The point I think I'm trying to make is that these distractions leave such little room for focused attention. I can name multiple times where I haven't given someone my full attention because I was distracted by an incoming text, or my instagram feed, or twitter, or a game on my phone. It's ridiculous to think that just because we have that wifi connection, our real, personal connections are dwindling. So, I'm deciding to scale back on certain social media and electronics. Little things that you do every day become routine (like checking facebook) but it takes 21 days to make or break a habit. Making small changes can greatly impact the way we live. Some changes I am going to make in order to focus my attention better are: signing out of facebook instead of keeping it constantly logged in and waiting for me, deleting certain time-consuming aps off of my phone and putting my phone away when I'm with friends/company.
Yes -- social media, cell phones and laptops are great and even necessary in this world but I want to encourage you to take a step back. I can gaurentee, I'm still going to spend time on my laptop every day for school, blogging, writing and probably a little netflix too. But it's those small changes, and the awareness that we are lacking personal connection because we have a wifi connection, that should encourage us to make those changes in our lives.
When I read this quote, I had one of those epiphany moments. I'm realizing how true it is that we desire focused attention; but the thing that really stands out to me personally, is how rare focused attention is these days. Focused attention is so rare that I fear being the center of someone's attention. When I'm in a group and I begin to tell a story or state an opinion and suddenly, all eyes are on me, I have a mini panic attack inside. All of those on me, listenting to what I'm saying.
Now a days, we are so used to having distractions. Mainly, our cell phones. Cell phones have so much packed into them now that you could be on your phone for hours without even realizing. I will be the first to admit, that I spend more time on my cell phone than I should. I know that. And I hate that it's true. It's funny how we always justify our time used on our cell phones and laptops. I'm not going to tell a lie and say that I could live life well without my laptop. I am absolutely a laptop addict. I check facebook daily, just because it has become so routine at this point that it's second-nature. I browse pinterest for inspiration for studying, the future, anything really. I write, I blog, I keep in touch with friends. I wouldn't say that spending a lot time on my laptop is necessarily a bad thing. It just really depends on what I'm doing. Sure, 5 hours of netflix isn't a wise use of my time. But for me, writing, which I do quickly and more efficiently on the computer, is theraputic for me. It helps me to develop my writing skills and to express myself. I think the same way about certain sites that I browse as well and blogs that I read.
The point I think I'm trying to make is that these distractions leave such little room for focused attention. I can name multiple times where I haven't given someone my full attention because I was distracted by an incoming text, or my instagram feed, or twitter, or a game on my phone. It's ridiculous to think that just because we have that wifi connection, our real, personal connections are dwindling. So, I'm deciding to scale back on certain social media and electronics. Little things that you do every day become routine (like checking facebook) but it takes 21 days to make or break a habit. Making small changes can greatly impact the way we live. Some changes I am going to make in order to focus my attention better are: signing out of facebook instead of keeping it constantly logged in and waiting for me, deleting certain time-consuming aps off of my phone and putting my phone away when I'm with friends/company.
Yes -- social media, cell phones and laptops are great and even necessary in this world but I want to encourage you to take a step back. I can gaurentee, I'm still going to spend time on my laptop every day for school, blogging, writing and probably a little netflix too. But it's those small changes, and the awareness that we are lacking personal connection because we have a wifi connection, that should encourage us to make those changes in our lives.
Friday, January 16, 2015
The ER Is So Much Cooler On TV
To sum up the last few days, the word I would use is overwhelming. Three hospital trips in the last 7 days and a ridiculous amount of stress. Sometimes I don't realize the effect that stress has on me until I'm in over my head. On Wednesday, I was debating going to the hospital again because I've had a very sore spot in the back of my knee with a raised spot and blue discolouration. I was having cramping in my knee, calf and thigh. There was heaviness in my chest and every time I exerted myself in any way, I was gasping for air. I began to get a cramping and what felt like a muscle twitch in the center of my chest. Needless to say, it was a little terrifying.
One of the things my Endometriosis specialist had warned me of when I started the medication 'Visanne', was the possibility of blood clots. Hormonal medication can have that effect for some reason. I had almost all of the tell-tale symptoms of a blood clot. Plus, I was on a plane just a few weeks ago, which can add to the possible-bloodclot-equation. I went to the hospital, not mentioning any worry of a bloodclot, and just told them what symptoms I was having. I had an x-ray and was told I have 'tendonitis'. Which is just bull. Sorry, doc. The symptoms got worse, more painful and the heaviness in my chest and shortness of breath started. I called telehealth to see whether or not I should go to the hospital, or wait it out. They suggested that I needed an ambulance to come get me. I decided to pass on the ambulance, not wanting a big scene, and I felt like I could handle it. The stress of knowing that a doctor had just told me that I should probably be in an ambulance freaked me right out though. Which made breathing even more difficult. I called my mom and by the time she picked me up and drove me to the hospital, I felt like I could barely talk because it wasted so much breath.
This time at the ER, I expressed my concern of a blood-clot because the symptoms were becoming much more prominent and even if it wasn't a blood-clot, it could be ruled out and we could move on to something else. Now after this whole experience, I officially hate the Bracebridge ER. If someone has 9 out of 10 symptoms of a bloodclot and is on medication that specifically warns them to keep an eye out for blood-clot symptoms; they should probably be tested for a blood-clot. The doctor I saw refused to test me for a blood clot, for the one reason being that my leg was not swollen. Yet, 50% of people who have bloodclots that cause pulmonary embolism and death, do not have ANY symptoms. Not swelling, redness, pain in the leg/knee/etc. Instead the pain in the back of my leg and knee was pinned on fibromyalgia (because apparently that's an excuse for any kind of pain) and my chest pain was blamed on acid reflux and stress. I can see how these things could be true. But this pain was different than I've ever experienced.
Now, I am not claiming to know more than a doctor. I want that to be clear. But what I can't understand, is that if someone has reason to believe that they may have a certain condition or something going on in their body, why not just ease their mind and test them? And how terrible would you feel, being the doctor who refused to test someone for a blood-clot and sent them home, then they later suffered from a pulmonary embolism and died. Just because you would not test them. I understand that tests cause the hospital money and it takes up time, but you are the only person who knows what it feels like to be inside of your body. If you feel that there is something wrong, you have every right to get it checked out.
I still haven't gotten anywhere with this issue. The pain is still present and I'm still confused as to what it could be. I want this to be clear: I am not a hypochondriac. I am simply someone who knows that her body is very susceptible to health-problems and I am on multiple medications that can complicate my health more than they help it sometimes. It's really hard to feel like no one even believes that you are really in pain. Especially when you're scared. I just want to encourage anyone to pursue help if you feel that something is really wrong. It's always better to safe than sorry. In conclusion, since I haven't figured out what is going on with my body yet, I'm going to keep pursuing this until I find out what the cause is or at least find something that eases the pain. If you come across a doctor that won't listen or is stubborn about your pain, find a new one. Get a second opinion. If the ER won't help, go to your family doctor, or a walk-in doctor. If you don't feel assured, then find someone who WILL assure you and work things out with you. It's worth it.
One of the things my Endometriosis specialist had warned me of when I started the medication 'Visanne', was the possibility of blood clots. Hormonal medication can have that effect for some reason. I had almost all of the tell-tale symptoms of a blood clot. Plus, I was on a plane just a few weeks ago, which can add to the possible-bloodclot-equation. I went to the hospital, not mentioning any worry of a bloodclot, and just told them what symptoms I was having. I had an x-ray and was told I have 'tendonitis'. Which is just bull. Sorry, doc. The symptoms got worse, more painful and the heaviness in my chest and shortness of breath started. I called telehealth to see whether or not I should go to the hospital, or wait it out. They suggested that I needed an ambulance to come get me. I decided to pass on the ambulance, not wanting a big scene, and I felt like I could handle it. The stress of knowing that a doctor had just told me that I should probably be in an ambulance freaked me right out though. Which made breathing even more difficult. I called my mom and by the time she picked me up and drove me to the hospital, I felt like I could barely talk because it wasted so much breath.
This time at the ER, I expressed my concern of a blood-clot because the symptoms were becoming much more prominent and even if it wasn't a blood-clot, it could be ruled out and we could move on to something else. Now after this whole experience, I officially hate the Bracebridge ER. If someone has 9 out of 10 symptoms of a bloodclot and is on medication that specifically warns them to keep an eye out for blood-clot symptoms; they should probably be tested for a blood-clot. The doctor I saw refused to test me for a blood clot, for the one reason being that my leg was not swollen. Yet, 50% of people who have bloodclots that cause pulmonary embolism and death, do not have ANY symptoms. Not swelling, redness, pain in the leg/knee/etc. Instead the pain in the back of my leg and knee was pinned on fibromyalgia (because apparently that's an excuse for any kind of pain) and my chest pain was blamed on acid reflux and stress. I can see how these things could be true. But this pain was different than I've ever experienced.
Now, I am not claiming to know more than a doctor. I want that to be clear. But what I can't understand, is that if someone has reason to believe that they may have a certain condition or something going on in their body, why not just ease their mind and test them? And how terrible would you feel, being the doctor who refused to test someone for a blood-clot and sent them home, then they later suffered from a pulmonary embolism and died. Just because you would not test them. I understand that tests cause the hospital money and it takes up time, but you are the only person who knows what it feels like to be inside of your body. If you feel that there is something wrong, you have every right to get it checked out.
I still haven't gotten anywhere with this issue. The pain is still present and I'm still confused as to what it could be. I want this to be clear: I am not a hypochondriac. I am simply someone who knows that her body is very susceptible to health-problems and I am on multiple medications that can complicate my health more than they help it sometimes. It's really hard to feel like no one even believes that you are really in pain. Especially when you're scared. I just want to encourage anyone to pursue help if you feel that something is really wrong. It's always better to safe than sorry. In conclusion, since I haven't figured out what is going on with my body yet, I'm going to keep pursuing this until I find out what the cause is or at least find something that eases the pain. If you come across a doctor that won't listen or is stubborn about your pain, find a new one. Get a second opinion. If the ER won't help, go to your family doctor, or a walk-in doctor. If you don't feel assured, then find someone who WILL assure you and work things out with you. It's worth it.
Tuesday, January 13, 2015
Tests, Surgeries + Everything In-Between
Today I finally got in to see an Internal Medicine specialist. It's been a long-time coming. Waiting for a specialist sucks; mostly because you're in pain during the whole waiting process but you know that there is nothing that can really be done until you see the specialist and get their opinion. And even once you get their opinion, you have to book tests and surgeries and procedures that will cause you to wait even longer. But at the same time, you're so excited to finally be figuring out what the heck is going on inside your body.
It's been decided that I need more blood work (Really? Again? I've already had bloodwork done three times this month), an hs CRP test (a test for determining a person's risk level for CVD, heart attacks, and strokes), an ESR test (a test that is used to help detect inflammation associated with conditions such as infections, cancers, and autoimmune diseases), a colonoscopy (a test that allows your doctor to look at the inner lining of your large intestine), an endoscopy (procedure used to examine a person's digestive tract), and a laparoscopy (a surgery that uses a thin, lighted tube put through an incision in the belly to look at the abdominal organs or the female pelvic organs). Apparently I'm going to have a couple more months of hospitals, doctors appointments, tests, surgeries, procedures and rest.
When your body isn't functioning properly, it's hard to know how to deal. Eventually, you learn things that help and things that hinder but I can't say that I have ever fully learned how to deal with it. And by 'it', I mean ALL OF IT. The physical and emotional pain, the frustation, confusion and unknown causes. I still break down with frustration as to why my body does this and why this is the life I am stuck in.
To provide you with a small glimpse as to what it's like (some-what) to deal with frustration with your body could be as simple as saying, think about how you feel when you have the flu. Another one could be, if you have ever broken a bone, or injured a ligament or sprained something; think about all the things you could not do and how frustrated you were that your body physically could not meet your demands. It's like that -- but with your blood and your organs, and your brain and different parts of your body. And the worst part is, sometimes you don't even know WHAT is causing it, and even when you DO know what's causing it, you still may never find out WHY its happening.
Throughout the next few months, I'm sure I will face some hard times. I'm also sure that I will see the blessings in diguise throughout all of it too. I want to ask anyone who reads my blog, to please, have patience with me. And thank you, for listening to what I have to say. It means so much to me that people are supporting me and reading my blog. I am overjoyed with the response I have received so far. Update will continue and so will rants and vent-ing sessions!
It's been decided that I need more blood work (Really? Again? I've already had bloodwork done three times this month), an hs CRP test (a test for determining a person's risk level for CVD, heart attacks, and strokes), an ESR test (a test that is used to help detect inflammation associated with conditions such as infections, cancers, and autoimmune diseases), a colonoscopy (a test that allows your doctor to look at the inner lining of your large intestine), an endoscopy (procedure used to examine a person's digestive tract), and a laparoscopy (a surgery that uses a thin, lighted tube put through an incision in the belly to look at the abdominal organs or the female pelvic organs). Apparently I'm going to have a couple more months of hospitals, doctors appointments, tests, surgeries, procedures and rest.
When your body isn't functioning properly, it's hard to know how to deal. Eventually, you learn things that help and things that hinder but I can't say that I have ever fully learned how to deal with it. And by 'it', I mean ALL OF IT. The physical and emotional pain, the frustation, confusion and unknown causes. I still break down with frustration as to why my body does this and why this is the life I am stuck in.
To provide you with a small glimpse as to what it's like (some-what) to deal with frustration with your body could be as simple as saying, think about how you feel when you have the flu. Another one could be, if you have ever broken a bone, or injured a ligament or sprained something; think about all the things you could not do and how frustrated you were that your body physically could not meet your demands. It's like that -- but with your blood and your organs, and your brain and different parts of your body. And the worst part is, sometimes you don't even know WHAT is causing it, and even when you DO know what's causing it, you still may never find out WHY its happening.
Throughout the next few months, I'm sure I will face some hard times. I'm also sure that I will see the blessings in diguise throughout all of it too. I want to ask anyone who reads my blog, to please, have patience with me. And thank you, for listening to what I have to say. It means so much to me that people are supporting me and reading my blog. I am overjoyed with the response I have received so far. Update will continue and so will rants and vent-ing sessions!
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