Today is D-day for me, the day that I finally might get some answers as to my son's health. For those of you who don't know, my son, 5 years old, has been diagnosed with epilepsy.
He had his first seizure just a little over two years ago, however had always suffered through terrible night terrors which were shown through an EEG to actually be seizures. His epilepsy is continually changing in that the first seizure was a generalized seizure where he went unresponsive for 6 hours. He had the night-time seizures. Then he started to have occipital lobe seizures where he sees things distorted. To add to the mix, this year he has been having quite a few absence seizures. He is on 3 different anti-seizure medications at the moment.
After waiting a good 7 months, we're on our way to the Epilepsy Monitoring Unit (EMU) at The Hospital for Sick Children where he will be having a Video EEG done over the course of the next three days. I'm dreading what the stress and lack of sleep is going to do for my pain levels, however we all push on to do whatever it is we must get through. I'm terrified of getting these results, but on the other hand, it's better to know exactly what we are looking at rather than digging our heads into the sand...
Melissa
Monday, January 19, 2009
Friday, January 9, 2009
The Fertility Journey: Part 2
It's been one of "those" days and it's only noon.
I went to see my endo specialist this morning, to talk about the possibility of surgery #4 or going on Clomid. He got to see my in my "finest" of shapes since my cycle started earlier this week and I could barely stand up straight. We did the endometrial biopsy to make sure that the cancer cells have not progressed any, which would not be a good sign for my fertility journey. To my readers who have not had the "pleasure" of going through with an endometrial biopsy, imagine if you will someone tearing a piece of your uterus out with needle-nose pliers.
In regards to my most recent miscarriage, according to the endo specialist, of "normal healthy" women's pregnancies, 8% will end in miscarriage. Gee, that's reassuring!
We can't do the Clomid for three reasons:
1) It may progress the endometrial cancer;
2) I don't have anovulatory cycles and I did manage to get pregnant which leads him to believe that the problem is not in egg production;
3) The risk of conceiving more than one child is too great, which means that the risk of pregnancy being life-threatening for me is increased dramatically.
Let me explain the last reason a bit better. As you may have read from an earlier post, I only have one functioning kidney, and that kidney is not at 100% functioning either. During a pregnancy, the woman's body is put under a lot of physical stress, including the kidneys. When I was pregnant with Jacob, I learned just how physically taxing the pregnancy would be for me. My blood pressure would frequently bottom out, I was vomiting around the clock despite being prescribed Diclectin, I had heart palpitations and suffered two kidney infections. For me to potentially carry twins or more would be very dangerous to my health. Which also means that IVF is out for the future, since your chances of twins or more is also greater in that case.
So the plan for now is to treat the pain once the cycle has begun with percocets. I had my bloodwork done with the CA-125 test added to it to make sure that the ovaries are healthy. I am to see him in a "couple of months" to determine if we should go ahead with surgery, but he would like for me to try managing the pain and keep trying to conceive rather than do surgery until it gets "really bad". Now, it is bad (the endo symptoms that have so far returned) but it's not as unbearable as it has been back when it was horrific prior to meeting this doctor. I know that I can live with the pain, I keep imagining the end-product in my arms, a sweet little baby to motivate me and drive me onwards.
I have mixed feelings about today. I'm sad but I'm also reassured that I have a really good and compassionate doc who is working WITH me. I want this so desperately and was really kind of hoping for the Clomid prescription, but what he said to me about my being a high-risk pregnancy with only a single baby, I know that no matter how much I want this that it's not worth putting my life on the line; I have Jacob and those that I love to also consider in this whole "big picture" too. So on the one hand I am crying tears of sadness to know that if natural methods fail to produce a child then it might not be possible to go through any ART (artifical reproductive technology) procedures. On the other hand, I'm content in at least knowing what cards exactly are on the table.
And even with all of this news, I am clinging on to hope. Whatever happens I already have the most wonderful gift in the world; people who love and support me. I have an amazing partner who declares that I am all that he needs and if it doesn't happen, then it doesn't. I have a beautiful little boy who thinks that he has a "great mommy" and he's also the centre of my universe. I will always remain hopeful that I can give my partner a child, and my son a brother/sister. Hope is something that allows for us to keep moving forward even in the face of the steep cliff-edge. Hope is something that must remain alive for without it, we have nothing driving us onwards, nothing to strive for, and live in the opposite of hope: despair. Personally, I choose happiness so I choose hope.
Melissa
I went to see my endo specialist this morning, to talk about the possibility of surgery #4 or going on Clomid. He got to see my in my "finest" of shapes since my cycle started earlier this week and I could barely stand up straight. We did the endometrial biopsy to make sure that the cancer cells have not progressed any, which would not be a good sign for my fertility journey. To my readers who have not had the "pleasure" of going through with an endometrial biopsy, imagine if you will someone tearing a piece of your uterus out with needle-nose pliers.
In regards to my most recent miscarriage, according to the endo specialist, of "normal healthy" women's pregnancies, 8% will end in miscarriage. Gee, that's reassuring!
We can't do the Clomid for three reasons:
1) It may progress the endometrial cancer;
2) I don't have anovulatory cycles and I did manage to get pregnant which leads him to believe that the problem is not in egg production;
3) The risk of conceiving more than one child is too great, which means that the risk of pregnancy being life-threatening for me is increased dramatically.
Let me explain the last reason a bit better. As you may have read from an earlier post, I only have one functioning kidney, and that kidney is not at 100% functioning either. During a pregnancy, the woman's body is put under a lot of physical stress, including the kidneys. When I was pregnant with Jacob, I learned just how physically taxing the pregnancy would be for me. My blood pressure would frequently bottom out, I was vomiting around the clock despite being prescribed Diclectin, I had heart palpitations and suffered two kidney infections. For me to potentially carry twins or more would be very dangerous to my health. Which also means that IVF is out for the future, since your chances of twins or more is also greater in that case.
So the plan for now is to treat the pain once the cycle has begun with percocets. I had my bloodwork done with the CA-125 test added to it to make sure that the ovaries are healthy. I am to see him in a "couple of months" to determine if we should go ahead with surgery, but he would like for me to try managing the pain and keep trying to conceive rather than do surgery until it gets "really bad". Now, it is bad (the endo symptoms that have so far returned) but it's not as unbearable as it has been back when it was horrific prior to meeting this doctor. I know that I can live with the pain, I keep imagining the end-product in my arms, a sweet little baby to motivate me and drive me onwards.
I have mixed feelings about today. I'm sad but I'm also reassured that I have a really good and compassionate doc who is working WITH me. I want this so desperately and was really kind of hoping for the Clomid prescription, but what he said to me about my being a high-risk pregnancy with only a single baby, I know that no matter how much I want this that it's not worth putting my life on the line; I have Jacob and those that I love to also consider in this whole "big picture" too. So on the one hand I am crying tears of sadness to know that if natural methods fail to produce a child then it might not be possible to go through any ART (artifical reproductive technology) procedures. On the other hand, I'm content in at least knowing what cards exactly are on the table.
And even with all of this news, I am clinging on to hope. Whatever happens I already have the most wonderful gift in the world; people who love and support me. I have an amazing partner who declares that I am all that he needs and if it doesn't happen, then it doesn't. I have a beautiful little boy who thinks that he has a "great mommy" and he's also the centre of my universe. I will always remain hopeful that I can give my partner a child, and my son a brother/sister. Hope is something that allows for us to keep moving forward even in the face of the steep cliff-edge. Hope is something that must remain alive for without it, we have nothing driving us onwards, nothing to strive for, and live in the opposite of hope: despair. Personally, I choose happiness so I choose hope.
Melissa
Monday, January 5, 2009
WARNING to the Endo Community: Dr. Gregory Smith
Update: As many individuals have reminded me that this individual might be either "borrowing" or faking a name, I am editing the post to reflect that no one knows for sure what this person's "real" name might be. It is important to take caution in all of your interactions with others, and don't be afraid to ask the tough questions when you have them. As always, the law says that we are innocent until proven guilty, however it is important to alert others to the potential dangers that are out there within the endo community.
As many of you know, for the past 7 years I have moderated the Goddesses of Endometriosis yahoo support group for women with endo and those who want to offer their support. I love doing this as it's something that I feel I can give back to the community in hopes of helping others avoid the even some of the pitfalls that I've been through in my journey. A life dedicated towards serving others is also a Buddhist principle that I try to follow in my life, hence the social work degree.
What is sickening me to death today, and it's not the fact that I'm on day 31 of my cycle!, is the fact that there are people and organizations out there who are all too willing to take advantage of our suffering. To play on the desperation of others who are anxiously searching for their "miracle" is a very sick and perverse thing to do. We're all searching for answers, we're all searching for treatments that work, we're all suffering in our own little (or perhaps not so little) way. After all, who among us wants to live in daily pain?
"Dr. Gregory Smith" joined my support group sometime within the last year and a half, and I've been trying to keep close tabs on this individual since. I have received several complaints from women on my support group, alleging that he has contacted them privately and "asked very forward, personal questions in regards to (among other things) sex life".
I had e-mailed this "gentleman" several times to ask what his area of specialty was. I figured if you're going to use the title in your name, then be willing to discuss it! I also asked him his purposes of joining the support group, how did he get involved in endo awareness, essentially digging for any information at all. I did not receive any responses, but he did drop off from posting messages to the group for awhile, although I have no idea if he's posted privately of course!
Yesterday, I had the fortunate and random opportunity to meet yet another endo lady from a different online support group. She had the unfortunate opportunity of possibly e-mailing with "Dr. Gregory" and had responded to my e-mail asking me if I had heard about him. The rest of the conversation was very disturbing and something that ALL of us should take strong note of:
"Dr. Gregory Smith" had befriended this lady on an online support group, although he was out of state. I think nothing of this since I speak with many worldwide in my efforts to raise awareness. However what happened next is quite disturbing.
"Dr. Smith" had apparently asked her very specific and detailed questions about her sex life. She got the impression that he was a complete "pervert" from what he was asking. He then allegedly proceeded to tell her that if she provided him with her health insurance information and her previous health history that he would then connect her with an endo specialist!
This is personal information. Individuals submitting info to "Dr. Gregory" have no idea where info sent to this "gentleman" is going to, who is using it and for what purposes. It's highly inappropriate to ask endo patients within a support group these types of questions, and for detailed health information. Whether this "gentleman" is a doctor or not, it all seems highly unacceptable!
I am urging you all to PLEASE take note of this. If any of you has had any personal dealings with "Dr. Gregory Smith", please let me know. Your health information, along with your health insurance plan, should not be abused by someone who is so obviously trying to take advantage of our suffering.
NOTE: Endochick has posted a good blog about protecting your personal information while online. It is highly worth taking the time to read this important notice! Endochick's blog is located at: http://endochick.wordpress.com/
As many of you know, for the past 7 years I have moderated the Goddesses of Endometriosis yahoo support group for women with endo and those who want to offer their support. I love doing this as it's something that I feel I can give back to the community in hopes of helping others avoid the even some of the pitfalls that I've been through in my journey. A life dedicated towards serving others is also a Buddhist principle that I try to follow in my life, hence the social work degree.
What is sickening me to death today, and it's not the fact that I'm on day 31 of my cycle!, is the fact that there are people and organizations out there who are all too willing to take advantage of our suffering. To play on the desperation of others who are anxiously searching for their "miracle" is a very sick and perverse thing to do. We're all searching for answers, we're all searching for treatments that work, we're all suffering in our own little (or perhaps not so little) way. After all, who among us wants to live in daily pain?
"Dr. Gregory Smith" joined my support group sometime within the last year and a half, and I've been trying to keep close tabs on this individual since. I have received several complaints from women on my support group, alleging that he has contacted them privately and "asked very forward, personal questions in regards to (among other things) sex life".
I had e-mailed this "gentleman" several times to ask what his area of specialty was. I figured if you're going to use the title in your name, then be willing to discuss it! I also asked him his purposes of joining the support group, how did he get involved in endo awareness, essentially digging for any information at all. I did not receive any responses, but he did drop off from posting messages to the group for awhile, although I have no idea if he's posted privately of course!
Yesterday, I had the fortunate and random opportunity to meet yet another endo lady from a different online support group. She had the unfortunate opportunity of possibly e-mailing with "Dr. Gregory" and had responded to my e-mail asking me if I had heard about him. The rest of the conversation was very disturbing and something that ALL of us should take strong note of:
"Dr. Gregory Smith" had befriended this lady on an online support group, although he was out of state. I think nothing of this since I speak with many worldwide in my efforts to raise awareness. However what happened next is quite disturbing.
"Dr. Smith" had apparently asked her very specific and detailed questions about her sex life. She got the impression that he was a complete "pervert" from what he was asking. He then allegedly proceeded to tell her that if she provided him with her health insurance information and her previous health history that he would then connect her with an endo specialist!
This is personal information. Individuals submitting info to "Dr. Gregory" have no idea where info sent to this "gentleman" is going to, who is using it and for what purposes. It's highly inappropriate to ask endo patients within a support group these types of questions, and for detailed health information. Whether this "gentleman" is a doctor or not, it all seems highly unacceptable!
I am urging you all to PLEASE take note of this. If any of you has had any personal dealings with "Dr. Gregory Smith", please let me know. Your health information, along with your health insurance plan, should not be abused by someone who is so obviously trying to take advantage of our suffering.
NOTE: Endochick has posted a good blog about protecting your personal information while online. It is highly worth taking the time to read this important notice! Endochick's blog is located at: http://endochick.wordpress.com/
Friday, January 2, 2009
Endometriosis: Facing the Battle Head-On - The Fertility Journey
I'm sitting here on day 28 of my cycle, and I already feel that familiar feeling. The one of anticipation, of hope and of dread all mixed together. While I tell myself that the chances of conceiving are extremely small, each month I still develop hope that "this may be the month". And it's that very hope that is so equally devastating when the anticipation of the start of the cycle arrives. I've been here before, wanting something so bad, and no matter how much I tell myself not to get my hopes up, every month I find myself doing so anyway. Perhaps it's natural of anything that we desire so deeply, that we feel the pain more intensely when it's something that we dream of every second.
I frequently get asked something that both ticks me off and drive me onwards: "If your pain was controlled (more or less) while on your medications, why bother coming off of them to try to conceive? Wouldn't it be better to focus on being well?" If only it were so easy. I knew coming off my medications would mean that I would experience a lot more pain than I have in some time. But at the same time, if this is my only chance to try to have one more child, something that I so desperately want in my future, than there is no "right time" to come off the medications. This is a recurring and progressive disease, 2 years from now I will likely be in the same position I am right now healthwise (hopefully no worse but keeping my fingers crossed for improvement!). If I would choose to wait, the question would be "wait for what? and when?". A lot of people still don't understand this position and tend to be very critical of the choices that have been made.
In a society that still places a large emphasis on the role of women to reproduce tomorrow's society, why on the one hand am I criticized for making this decision, but on the other hand I am criticized if I would have made the decision to stay on pain meds (aka "being selfish")? Why is it that we have to live this double-edged sword? It doesn't effect my self-concept directly, I know that I contribute a lot to today's society, both in my role in the endo community and my role as a social-worker. It just really rubs me the wrong way when people have to live in a "damned if you do, damned if you don't" world.
Is a possible explanation for this double-edged sword related directly back to our illness? After all, there is nothing more that society fears than suffering, illness and pain. Not so long ago, doctors used to recommend forced sterilization for those suffering from mental illness or developmental delays for fear of passing these conditions along to others, Is this why the message to us with this illness is one of ignorance and lack of knowledge? If they solve our "infertility issue" then we just might breed the next generation of people living with chronic illness? Is it really this political?
I've experiences the political pregnancy issue first-hand again this past Christmas. One of my old colleagues was having a Christmas lunch with the rest of our work team, and asked whether I had any plans for children in the future. What are you supposed to say in front of those you work with? My quick answer was a shake of my head in the negative and a "it's likely not a possibility". Why do we have to skirt around the issue? Why couldn't I have said "Thanks for asking and I'm not giving up hope but I've just had two consecutive miscarriages"?
So now that my cycle time is fast approaching, I have a strong feeling that this isn't going to be the month either. I have a pretty good way of telling; I have endo cells that are located in my torso muscles that darken with each approoaching cycle, to recede a bit once I restart. Now if only I could resolve myself to really not get my hopes up at all...
Thinking the best of thoughts but trying to expect nothing,
Melissa
I frequently get asked something that both ticks me off and drive me onwards: "If your pain was controlled (more or less) while on your medications, why bother coming off of them to try to conceive? Wouldn't it be better to focus on being well?" If only it were so easy. I knew coming off my medications would mean that I would experience a lot more pain than I have in some time. But at the same time, if this is my only chance to try to have one more child, something that I so desperately want in my future, than there is no "right time" to come off the medications. This is a recurring and progressive disease, 2 years from now I will likely be in the same position I am right now healthwise (hopefully no worse but keeping my fingers crossed for improvement!). If I would choose to wait, the question would be "wait for what? and when?". A lot of people still don't understand this position and tend to be very critical of the choices that have been made.
In a society that still places a large emphasis on the role of women to reproduce tomorrow's society, why on the one hand am I criticized for making this decision, but on the other hand I am criticized if I would have made the decision to stay on pain meds (aka "being selfish")? Why is it that we have to live this double-edged sword? It doesn't effect my self-concept directly, I know that I contribute a lot to today's society, both in my role in the endo community and my role as a social-worker. It just really rubs me the wrong way when people have to live in a "damned if you do, damned if you don't" world.
Is a possible explanation for this double-edged sword related directly back to our illness? After all, there is nothing more that society fears than suffering, illness and pain. Not so long ago, doctors used to recommend forced sterilization for those suffering from mental illness or developmental delays for fear of passing these conditions along to others, Is this why the message to us with this illness is one of ignorance and lack of knowledge? If they solve our "infertility issue" then we just might breed the next generation of people living with chronic illness? Is it really this political?
I've experiences the political pregnancy issue first-hand again this past Christmas. One of my old colleagues was having a Christmas lunch with the rest of our work team, and asked whether I had any plans for children in the future. What are you supposed to say in front of those you work with? My quick answer was a shake of my head in the negative and a "it's likely not a possibility". Why do we have to skirt around the issue? Why couldn't I have said "Thanks for asking and I'm not giving up hope but I've just had two consecutive miscarriages"?
So now that my cycle time is fast approaching, I have a strong feeling that this isn't going to be the month either. I have a pretty good way of telling; I have endo cells that are located in my torso muscles that darken with each approoaching cycle, to recede a bit once I restart. Now if only I could resolve myself to really not get my hopes up at all...
Thinking the best of thoughts but trying to expect nothing,
Melissa
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