I think I am going to register to raise money and if I raise at least the minimum I will be able to take part in the walk that will happen September 11th 2011 in Toronto, now I just have to finish my registration and try to raise lots of money.
For me I think it would be great to raise enough money that I can take part in the walk (the walk is 60km if you sign up for 2days, or 32 for one day and I am thinking 32km would be pushing it, so that’s the one I am signing up for) but even if I just manage to raise money to help I think that will be enough to make me happy.
From the website:
"All of this is made possible because of people just like you! Be a part of our celebration on September 10-11, 2011 and customize the best Weekend experience for you. Choose to enjoy the full 2-Day, 60km distance for maximum impact, or try the 1-Day 32km distance. You can also designate your fundraising dollars to go specifically to breast cancer or gynecologic cancers. Whichever experience you choose, make YOUR Weekend matter!"
To be able to take part in the walk I will have to raise $1250, so once I have all the paperwork done and am able to start collecting the money I will be sharing the website they will give me to help me share and fundraise for a really good cause.
As someone with endometriosis me and all my endo sisters are at an increased chance of having many of the women’s cancers (largely in part since we can’t always have children and those who never have a child are often at a greater risk).
Then there is the reality that not only do many of these cancers affect so many people but have affected people very near and dear to me so I would like to walk in a way for them (both those who are still here thankfully, and those who we have all lost).
Just thought I would share all that.
And in other news, I still have the Mirena in and it is still seeming to get better and better as time goes on, though I think I am on my “period” now (key word that makes me happy in that sentence was think haha) I am having some more cramping then my normal day to day and am also spotting, and with an IC flair happening it seems to be making sense.
Though as a reminder to those who know me and my family the fact I have the Mirena IUD is still hush hush please and thank you. In time I will share it with everyone who might want to know, but I am betting that will be closer to the 6-8month mark and right now I am almost at the 4month mark so it will take yet. They key is I don’t want to share until it has done crazy wonders for me and although it has already helped greatly it hasn’t made my day to day pain disappear and I am hoping it will in part and once it does I can brag I am on it for it will my little miracle piece of plastic in my uterus haha.
Monday, March 28, 2011
Tuesday, March 1, 2011
1st day of Endometriosis awarness month
Today is the first day of endometriosis awareness month, and tomorrow is yellow shirt day to show your support for all the women in your life who are suffering from endometriosis.
I had brilliant plans to get out and buy a yellow shirt to then put iron on writing about endometriosis either Sunday or Monday. However Sunday I came down with the flu, started feeling really weird after we ate dinner, it calmed down as we went to bed but apparently not for long since about 2hours later I woke up feeling really nauseated and then proceeded to puke out everything in my stomach. As to not bug S more than hearing me puke at midnight, smelling up the room by doing so and in the midst of it all waking him up when he needed to work in the morning I headed downstairs. Later I learned I had in fact puked up everything when my body decided to continue trying to make me throw up and there was nothing left to come out.
Now Being Tuesday it makes it tricky to get out and get a yellow shirt but perhaps if I am not out and about tomorrow anyways it’s not that it matters.
I am feeling better today now that I can keep some carful things down.
I had brilliant plans to get out and buy a yellow shirt to then put iron on writing about endometriosis either Sunday or Monday. However Sunday I came down with the flu, started feeling really weird after we ate dinner, it calmed down as we went to bed but apparently not for long since about 2hours later I woke up feeling really nauseated and then proceeded to puke out everything in my stomach. As to not bug S more than hearing me puke at midnight, smelling up the room by doing so and in the midst of it all waking him up when he needed to work in the morning I headed downstairs. Later I learned I had in fact puked up everything when my body decided to continue trying to make me throw up and there was nothing left to come out.
Now Being Tuesday it makes it tricky to get out and get a yellow shirt but perhaps if I am not out and about tomorrow anyways it’s not that it matters.
I am feeling better today now that I can keep some carful things down.
Thursday, December 16, 2010
Writen December 16 2010
If you are someone who knows me and talks to other family of mine please read this and forget it, or keep it to yourself.
The things I am about to say in here few people know about and those people DO NOT include my parents or family in general.
I wrote this then decided to hold off posting this till I knew how my body seemed to be handling the new treatment.
(Written December 16 2010)
One week ago today I went to the doctors, a GYN and started on one "medication" to try to help out with my endometriosis. It’s a last resort treatment but it is better than the other alternative last resort things that are also not guaranteed to pan out (like a hysterectomy I have no intention of trying anytime soon).
This treatment is also a birth control used by many women it is known as the Mirena IUD.
It’s been one week ago today that I had it inserted and insertion was painful, but insertion doesn’t take that long, though I had extra pain since even the speculum hurts but I got through it holding S's hand and looking up at the ceiling reading and rereading the comics (this doctor has doctor related comics on the ceiling so when your being examined you have a distraction, its awesome).
The medication you insert the night before you have the IUD inserted started me cramping within an hour but I was able to cope with it. The actual insertion did hurt allot and I was vocal about it, though I was medicated so wonder how much worse it could have been if I had only taken Tylenol like he had suggested (I was on dilaudid, and a bunch of herbal sedatives along with gravel since I know pain makes me throw up at times). I expected bleeding after insertion but that never really happened yes, I had one really small clot at that was it. However the cramping after insertion is still happening I am hoping it will settle down.
The things I am about to say in here few people know about and those people DO NOT include my parents or family in general.
I wrote this then decided to hold off posting this till I knew how my body seemed to be handling the new treatment.
(Written December 16 2010)
One week ago today I went to the doctors, a GYN and started on one "medication" to try to help out with my endometriosis. It’s a last resort treatment but it is better than the other alternative last resort things that are also not guaranteed to pan out (like a hysterectomy I have no intention of trying anytime soon).
This treatment is also a birth control used by many women it is known as the Mirena IUD.
It’s been one week ago today that I had it inserted and insertion was painful, but insertion doesn’t take that long, though I had extra pain since even the speculum hurts but I got through it holding S's hand and looking up at the ceiling reading and rereading the comics (this doctor has doctor related comics on the ceiling so when your being examined you have a distraction, its awesome).
The medication you insert the night before you have the IUD inserted started me cramping within an hour but I was able to cope with it. The actual insertion did hurt allot and I was vocal about it, though I was medicated so wonder how much worse it could have been if I had only taken Tylenol like he had suggested (I was on dilaudid, and a bunch of herbal sedatives along with gravel since I know pain makes me throw up at times). I expected bleeding after insertion but that never really happened yes, I had one really small clot at that was it. However the cramping after insertion is still happening I am hoping it will settle down.
Sunday, November 21, 2010
having megga anxiety issues about this week.
I wish I wasn’t on the verge of an anxiety attack at the thought of going to Toronto to see my pain management doctor all because my period is likely going to show either the day of the appointment or the day I am trying to bus back home.
Its really sad in my eyes that the anxiety is cause I know where ever I am when my period shows up I am trapped for the next 18hours since I can often not walk, lift things anything really and often in too much pain to communicate, what bugs me more is this is all to go to a PAIN MANAGMENT appointment, yet this issue lies with the fact they fail at managing my pain (on a day to day it’s okay done but not at my worst pain points at all) Another doctor has had to pick up the slack (Thankfully another doctor who understands endo, but because he is a god in the pain management world, people can often only see him 5times total and the next available appointment that I booked almost a month ago is in late January)
So I might have to postpone my f-ing appointment with the doctors I dislike simply because I can’t go see them from pain and then will be even more scrutinised when I do see them after period for the fact that I put off appointment (they will ignore the fact I couldn’t walk as they have before) and then you get rewarded with my joyous monthly urine test (a new perk of seeing the doc in the last 4months) I will get hell likely for the higher concentrations of items in my urine even though what else was I supposed to do? Or if it goes as it has the last few times (when I show up a week before period so no high concentrations) am told there is no sign of my pain meds in my system so the logical explanation for that is that I am selling my medication. Oh how I love going to a doctor that doesn’t take my pain issues as real and either makes me feel like I am a druggie, or a drug dealer. Fucking fantastic.
oh and another thing is 2months ago back really started bugging me then a month ago worse, then I was in my friend’s car when she was rear ended (do you see where this is going?) so my back really fussy/painful now. The doc gave me muscle relaxants that I tried before last period and found completely useless (tried one 2nights in a row) so I plan on bringing them to him next time I see him for him to dispose, since he seems to think I am selling everything.
Its really sad in my eyes that the anxiety is cause I know where ever I am when my period shows up I am trapped for the next 18hours since I can often not walk, lift things anything really and often in too much pain to communicate, what bugs me more is this is all to go to a PAIN MANAGMENT appointment, yet this issue lies with the fact they fail at managing my pain (on a day to day it’s okay done but not at my worst pain points at all) Another doctor has had to pick up the slack (Thankfully another doctor who understands endo, but because he is a god in the pain management world, people can often only see him 5times total and the next available appointment that I booked almost a month ago is in late January)
So I might have to postpone my f-ing appointment with the doctors I dislike simply because I can’t go see them from pain and then will be even more scrutinised when I do see them after period for the fact that I put off appointment (they will ignore the fact I couldn’t walk as they have before) and then you get rewarded with my joyous monthly urine test (a new perk of seeing the doc in the last 4months) I will get hell likely for the higher concentrations of items in my urine even though what else was I supposed to do? Or if it goes as it has the last few times (when I show up a week before period so no high concentrations) am told there is no sign of my pain meds in my system so the logical explanation for that is that I am selling my medication. Oh how I love going to a doctor that doesn’t take my pain issues as real and either makes me feel like I am a druggie, or a drug dealer. Fucking fantastic.
oh and another thing is 2months ago back really started bugging me then a month ago worse, then I was in my friend’s car when she was rear ended (do you see where this is going?) so my back really fussy/painful now. The doc gave me muscle relaxants that I tried before last period and found completely useless (tried one 2nights in a row) so I plan on bringing them to him next time I see him for him to dispose, since he seems to think I am selling everything.
Thursday, May 13, 2010
Didn't expect a Support Group to be so Great
I often mention how fantastic it is that I live in a time where I can find other women from all over the continent and even world who understand what life is like with endometriosis or with chronic pain with the use of the internet. I have found this extremely helpful for years and even more so since my endometriosis has kicked up a fuss and taken over most all parts of my life. Tonight however I learned something, as great as talking to someone online is it does not compare at all to sitting in a room filled with other woman who simply “get it”. There is absolutely no comparison.
When my dear friend Jackie mentioned to me about a support group in Toronto for endometriosis I basically shrugged it off at the start since I couldn’t see myself actually opening up or enjoying a support group. Then Jackie pushed the idea harder on me and that first month I was considering it I was not able to travel out to Toronto in order to be there Thursday night since I had myself on the books to be doing reception at the resource center the next morning. This month however I made it so I could attend the group and it was so very worth it.
When I get back in town I hope to talk to the person who I “work” for on Friday afternoons every week to arrange either changing the day I volunteer each week or for the 2nd week of every month in order to be able to continue going to the support group meetings because tonight was such a breath of fresh air and some venting about certain doctors in our lives.
I unlike a fair number of people with endometriosis or even chronic pain had someone who understands since day one right in my life and in my home. My mother started pushing the doctors to get answers as the 2nd period of my life crippled me and left me lying on the floor in the bathroom in tears at the age of 14. For years she would tell me she thought I had endometriosis and I told her I thought it was only bad periods, since I didn’t want to have something “wrong” with me or be “sick”. As time went on my periods got worse and worse to the point they scared me, and it scared my mother to so without answers we tried treatments. She had endometriosis as a young woman and continued to have issues with the horrible pain until I was 3years old and she at that time had an ooferectomy. Growing up she understood the pain and also knew enough about what treatments would be in my future. In fact because of this I had tried 5 different birth control pills and Depo-Provera before I had even been diagnosed, in fact I had been on 4 of those birth control pills before I became sexually active. She was right there with me when I was in too much pain to be able to stand let alone walk, or when I was in the hospital for 24hours hooked up to IV and getting morphine hourly along with ultrasounds with them trying to figure out what was “wrong”. The only issue with having someone who has had endometriosis being so close in your life is if they had one specific thing that helped, they tend to look at that thing as the holy grail even if it has no guarantee and is not reversible (like an ooferectomy).
The pushing me to have an ooferectomy since the age of 18 aside, having a mother or anyone actually to be your stand by is very helpful. She still is with me for most all doctor appointments for a few reasons,
1) I can’t drive so for some of them it’s simply because she can give me a ride or even if I could get to the place by transit there are times where I am in too much pain to get places without being dropped off right at the door.
2) She is a second set of eyes and ears and often brain to remember what the doctor’s say, do and also to come up with questions to ask them.
3) When doctors tell me it’s in my head or there’s nothing wrong, I can’t often be as strong as I would like to and can end up balling while she can be strong and push for the right tests. She can be overly pushy for tests at times to but that is just something I have to accept with everything else she is willing to offer.
Having a family member I can talk to about this is helpful, as I said I always found random strangers over the internet to often be more helpful to talk to though since there was less judgment or at least if there was judgement it didn’t affect me. As helpful as talking to internet friends though however I now know it does not compare in the slightest to sitting with a bunch of other women who have done the same treatments, had the same pain, been told the same things and just get it. Seeing the connections and differences between our symptoms was interesting and also informative and from the whole thing I got the name of some doctors I might try to get referred to.
I would love to thank Jackie for pushing me to go to this support group in Toronto. The person who runs the support group and all the women who attended were amazing and thank you for having this group and for having me. For those who might read this and are within traveling distance to Toronto its worth going to this support group. Meetings are the second Thursday of almost every month in a building that woman’s college hospital owns.
T.E.N.T. or The Endometriosis Network of Toronto has a face book group and must likely also have info online on the website for woman’s college (since I am guessing that’s where Jackie found info about it) if one were to Google the name.
When my dear friend Jackie mentioned to me about a support group in Toronto for endometriosis I basically shrugged it off at the start since I couldn’t see myself actually opening up or enjoying a support group. Then Jackie pushed the idea harder on me and that first month I was considering it I was not able to travel out to Toronto in order to be there Thursday night since I had myself on the books to be doing reception at the resource center the next morning. This month however I made it so I could attend the group and it was so very worth it.
When I get back in town I hope to talk to the person who I “work” for on Friday afternoons every week to arrange either changing the day I volunteer each week or for the 2nd week of every month in order to be able to continue going to the support group meetings because tonight was such a breath of fresh air and some venting about certain doctors in our lives.
I unlike a fair number of people with endometriosis or even chronic pain had someone who understands since day one right in my life and in my home. My mother started pushing the doctors to get answers as the 2nd period of my life crippled me and left me lying on the floor in the bathroom in tears at the age of 14. For years she would tell me she thought I had endometriosis and I told her I thought it was only bad periods, since I didn’t want to have something “wrong” with me or be “sick”. As time went on my periods got worse and worse to the point they scared me, and it scared my mother to so without answers we tried treatments. She had endometriosis as a young woman and continued to have issues with the horrible pain until I was 3years old and she at that time had an ooferectomy. Growing up she understood the pain and also knew enough about what treatments would be in my future. In fact because of this I had tried 5 different birth control pills and Depo-Provera before I had even been diagnosed, in fact I had been on 4 of those birth control pills before I became sexually active. She was right there with me when I was in too much pain to be able to stand let alone walk, or when I was in the hospital for 24hours hooked up to IV and getting morphine hourly along with ultrasounds with them trying to figure out what was “wrong”. The only issue with having someone who has had endometriosis being so close in your life is if they had one specific thing that helped, they tend to look at that thing as the holy grail even if it has no guarantee and is not reversible (like an ooferectomy).
The pushing me to have an ooferectomy since the age of 18 aside, having a mother or anyone actually to be your stand by is very helpful. She still is with me for most all doctor appointments for a few reasons,
1) I can’t drive so for some of them it’s simply because she can give me a ride or even if I could get to the place by transit there are times where I am in too much pain to get places without being dropped off right at the door.
2) She is a second set of eyes and ears and often brain to remember what the doctor’s say, do and also to come up with questions to ask them.
3) When doctors tell me it’s in my head or there’s nothing wrong, I can’t often be as strong as I would like to and can end up balling while she can be strong and push for the right tests. She can be overly pushy for tests at times to but that is just something I have to accept with everything else she is willing to offer.
Having a family member I can talk to about this is helpful, as I said I always found random strangers over the internet to often be more helpful to talk to though since there was less judgment or at least if there was judgement it didn’t affect me. As helpful as talking to internet friends though however I now know it does not compare in the slightest to sitting with a bunch of other women who have done the same treatments, had the same pain, been told the same things and just get it. Seeing the connections and differences between our symptoms was interesting and also informative and from the whole thing I got the name of some doctors I might try to get referred to.
I would love to thank Jackie for pushing me to go to this support group in Toronto. The person who runs the support group and all the women who attended were amazing and thank you for having this group and for having me. For those who might read this and are within traveling distance to Toronto its worth going to this support group. Meetings are the second Thursday of almost every month in a building that woman’s college hospital owns.
T.E.N.T. or The Endometriosis Network of Toronto has a face book group and must likely also have info online on the website for woman’s college (since I am guessing that’s where Jackie found info about it) if one were to Google the name.
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