Canadian girl in pain

Skullcap for Interstitial Cystitis

2011-11-03T06:56:00.000-04:00

well i have been working on the post i said i would be doing next, but i am having issues getting the details on one of the treatments, since to be honest most doctors don't know about it and apparently there isn't exactly research on its use either, and i don't know how to give details about it without quoting right now so i will start off with the safest treatment that anyone should be able to get their hands on, and in the next post i will cover the next treatment and so on.

Alternative treatment for bladder issue, in my case semi diagnosed Interstitial Cystitis (i think i have explained being "semi diagnosed" in a past post, though later i might check and if not, i will explain it in a later post)

Herb (found at health food stores)
name: Skullcap (Scutellaria lateriflora)

TraditionalUse:
It is used in alternative medicine as an anti-inflammatory,abortifacient, antispasmodic, slightly astringent, emmenagogue, febrifuge,nervine, sedative and strongly tonic.
Traditionally it is known as a nerve tonic and sedative for relieving anxiety, neuralgia, and insomnia. In China it is found in prescriptions forfevers, colds, high blood pressure, hypertension, insomnia, headache,intestinal inflammation, vomiting of blood, and other
conditions. Because of its calming effects on the nervous andmusculoskeletal system, it was also at one time considered to be a remedy forrabies, thus it's name "mad dog weed."

Percautions: A medicinal infusion of the plant is used to promotemenstruation, it should not be given to pregnant women since it can induce amiscarriage. There have been no documented cases of negativeinteractions with other herbs or medications, it does have a sedative effectand should not be combined with prescription sedatives.(for the record i havenever had it effect my menstruation in any way at all, and i have taken scull capand then a prescribed sedative without thinking and no issues personally). Overdosesymptoms include giddiness, stupor, confusion, irregular heartbeat andtwitching

Preparations:
Skullcap is available in dried form as teas, capsules, tablets, and tinctures.Care should be taken to buy skullcap from a reliable source to ensure theidentity of the plant material.

How i take:
2-4capsles (425MG each) when i am starting to get a flair or getting really bad sudden issues.(granted i find my IC flairs are at times semi anxiety related so that might bewhy it helps me but it being a sedative effecting nerves might also be part ofit, so who knows. But i do often find it impressively effective. I find if i am feeling urgency and painbefore i take it, it takes effect and makes it so i don't feel the need to rushto the washroom within 20-40minutes of taking the pills. This seems to happenfor more anxiety based flairs or when its not too extreme IC flair.

Future Post.

2011-10-27T08:26:00.004-04:00

because of a recent comment i got i will soon be doing a post about how i came to be "diagnosed" with IC (or whatever it is) and the tricks and solutions of medications and things i do to help with the pain and urgency. just have to get the information together and the goods and bads about each medication (for those of you in the usa 2 of the 3 i use you can simply go buy at the store. those in canada like me only 1 of the 3 can you go buy... however if you have friends who go to the USA every now and then you can get the 2nd medication brought home to you)will go into all this more later.

My 30

2011-10-21T00:15:00.001-04:00

1. The illness I live with is: Endometriosis, Interstitial Cystitis, 2. I was diagnosed with it in the year: 2005 for endo, 2010 for IC 3. But I had symptoms since: 2001 for endo, 2008 for IC 4. The biggest adjustment I’ve had to make is: Not being able to be "normal". Achievements such as finishing college, having a job, having a social life are things that when others speak of or ask me about leave me fighting to keep it together. 5. Most people assume: No idea. Can't say for most people only one who has spoken their mind and they don't think i can be in that much pain or possibly have constant pain, and lecture about using pain medication yet didn't see a problem with taking theirs with a bottle of wine. 6. The hardest part about mornings are: sitting up to get moving, often i can be awake in bed without any pain when i first wake up since its as though the rest of me isn't fully awake, but once i move the nerves wake up and my reality comes rushing back. 7. My favorite medical TV show is: Grey's Anatomy 8. A gadget I couldn’t live without is: Toshiba Laptop, TENS unit, PS3 9. The hardest part about nights are: thinking back over the day and thinking i didn't mange to do anything useful or worthwhile. 10. Each day I take __ pills & vitamins: currently 1-5daily 11. Regarding alternative treatments I: liked acupuncture and many other things but $$ so right now DIY acupuncture and massage now and then along with herbs as needed. 12. If I had to choose between an invisible illness or visible I would choose: invisible since that's what i know. 13. Regarding working and career: sole crushing.... no idea, if in years able to work well, and drive perhaps a dula. 14. People would be surprised to know: That the thought of giving up occurs to me now and then, yet i am not depressed 15. The hardest thing to accept about my new reality has been: having all my goals postponed 16. Something I never thought I could do with my illness that I did was: last this long still smiling 17. The commercials about my illness: there are none that i have seen 18. Something I really miss doing since I was diagnosed is: diagnose date didn't make the change, the day the pain came did. but so many things. 19. It was really hard to have to give up: my education and physical strength. 20. A new hobby I have taken up since my diagnosis is: crafting, sewing/beading/wood carving/card making. 21. If I could have one day of feeling normal again I would: go camping, walk/hike the trails and horse back riding. 22. My illness has taught me: things that i would rather keep to myself. 23. Want to know a secret? I will never get over the heartbreak of having a hysterectomy. 24. But I love it when people: try to work with my reality (Anne and Jackie are great at that) 25. My favorite motto, scripture, quote that gets me through tough times is: "grant me the serenityto accept the things I cannot change;courage to change the things I can;and wisdom to know the difference. Living one day at a time;Enjoying one moment at a time;" 26. When someone is diagnosed I’d like to tell them: you can ask me anything as there are very often issues and symptoms never mentioned in literature or by doctors (about 5+a year ask about leg pain, or mention it not thinking it is connected to endo.) 27. Something that has surprised me about living with an illness is: its made me more creative. 28. The nicest thing someone did for me when I wasn’t feeling well was: Hold me. 29. I’m involved with Invisible Illness Week because: it will only stay invisible if no one tries. 30. The fact that you read this list makes me feel: warm

2011-09-17T18:02:00.001-04:00

I clearly did not keep up with detailing my ongoing experiences with the butrans patch, so i will try to do some catch up now.At this very moment i have a huge headache or borderline migraine, and this as been my reality for most of the last 4 weeks since my dose was upped from 5mcmg/h to 10, though it seems to be laying off a bit since earlier in the day i was headache free. Thought i would would write out a detailed update but this isn't working with my head hurting so bad, but the key is things are getting better again, and for pain it works well though might adjust more when i can cope with more changes in medication.

Start of day 3 on Butrans

2011-08-03T08:07:00.002-04:00

Today (day 2) i was feeling pain so stayed in bed since normaly i would take some pain pills and still not move much but with no pills as a choice i just didnt move at all really.

yesterday (at the start of day 2) i was finding scott talking to me really rather frustrating to the point i was about to break down into tears, i simply could not handle comunicating or at least not out loud in speach. If he was in the room it was slightly better but if he was out of sight i couldnt do it and was getting really really cranky about it i simply couldn't pricess the information i guess. I was also experiencing leg and arm cramps due to there being no dilauded in my body, or way way less then there has been since last october (when i started changing from demerol to dilauded) so i was extra annoyed due to simply how uncomfertable i was.
I had been feeling like i was in a fog all day before this inability to comunicate but the comunication might have been an issue already i just dont know since i was home alone for 13hours and i dont seem to be finding the issue as bad with comunication via writing or typing, still haveing some issues with the ability to think out what i want to say or get accross but not nearly as bad.

Today as i said i was in pain so didnt move much, and didn't feel to foggy over all just sleepy and mellow. Had a bad headache for a while, but cant say if thats a result of the butrans, or the fact it was raining here since i often get weather related pressure headaches. Now that S is home again it is quickly comming clear just how much communication out loud is still being an issue for me but today i could at least explain it to him to let him know it wasn't him that was driving me loony it was i couldnt handle information comming to me in that form let alone responding in a timely fashion. He even thought to ask about if it was in all forms and i clued in when i was texting him earlyer in the day it wasnt nearly the same level of issuse or when talking to friends over msn.

Also i feel really in a fog now but it could be that its kicking in more or that its the same as it was earlyer i am simply more tired at the moment who knows.
Hope it mellows out though seeing as i am about to pay some one a deposit for what i beleive is my largest purchase yet, and she is friendly and i was chatty to her when i saw her on sunday and looked at what i have now desided to buy (will explain when everything is finished an is all good) so she will likely expect me to be able to talk again, and yet today i dont really think i can handle it so i have been telling S all the things we have to ask or tell her when we see her next cause i simply am unsure if i can or will do it on my own.

All this said the patch has stayed on no issue, haven't scratched off and its right in reach of my hand when i am sleeping or resting. (on the middle front of my right thigh) and today it went through a shower with no issue, though i did avoid getting soap on it as much as possible.

Changes

2011-08-01T21:43:00.003-04:00

Last Monday i had an appointment with my family doctor to get him to fill out some forms so i can reapply for the Ontario disability tax credit, since i had been mailed a letter saying it was time to have to redo that. My doctor filled it out again without much fuss, though i think i am less likely to be accepted this time around compared to last time simply due to the wording he used but will see and if rejected i can try appealing it. Fact of the matter is it doesn't effect me at all, at least not as life stands since you have to have an income for it to be use full and without an income i can't claim in the only one who can is Scott even though he doesn't pay any of my medical bills. He does help me financially so its okay but still its weird how it works for claiming.

Tuesday was an appointment with my good pain doctor, and after some chitchat it was decided he would try me on the butrans patch (starting off at 5mcg/h) with the likely hood of having to ramp up later. The patch means that i cant take any of my normal oral opioid pain medication however though so i delayed putting that patch on since i knew once it was on the first 2 weeks might be rather rough, the other thing was i had to taper off the dilaudid i was on as to not get withdrawal symptoms to severely, no matter what i knew i would get some but they weren't bad just some muscle cramps.

I put the patch on at about 7am (since we are on nights that was getting late in our evening) and about a half hour i put it on i was feeling weird and really drowsy but that is far more likely that i simply was tired then the patch having any effect but i am going to try to keep track of everything i feel for the first 3weeks or so.

i am feeling a little out of it now or perhaps just drowsy again but not sure what it is, might just be that i am in fact sleepy. I was fine when i walked over to the store earlier to get cash and some grosheries so i am unsure what is up but will keep updated.

Thinking About The Future

2011-05-16T02:40:00.003-04:00

I’ve been thinking about the future lately, something I haven’t done in ages. Something if you live in chronic pain you too have avoided thinking about for quite some time like me since it isn’t happy and hopeful like it might be for others but scary and impossible and often hopeless.

To be fair though, although I have been thinking of the future I haven’t been like you would expect a twenty something to think, but more like I did as a child in the “wouldn’t it be fun if I were/ could do...” sort of manner. Granted within that I have been trying to make sure my mind doesn’t wander into anything that requires a/or much education and many other limits but I have been thinking.

I spend allot of my free time looking on blogs that inspire me to refinish furniture, or make this or that and I love it. I have always loved doing things where there was a true finished product at the end of my work, something I could look at and think “I did that”. The reality is those things I don’t think could make me money and even if I wanted to try we have no true place that I could use as a shop here, so like S my dreams might depend on our winning the lotto and us each having our own shop (his for working on cars, and mine for working on furniture/making things unlike his I would want mine well heated). Right now though what could I do? I should try and get a part time job at something local but each time I get really set on that my pain gets worse for a month making me feel useless.

I also have a choice in my head going over and over again (well only a choice if I am hired by who I want) and that is when I look for work do I find a place I won’t really enjoy overly so if and when they fire me it won’t hurt so bad or do I try to find something I will like and hope I can make it work? I know letting fear get in the way of life is bad but it’s me fear and it has been for ages. The thought of being fired and outright told I am useless is more then I can handle even if the alternative is wasting my savings to live on and feeling useless at home doing nothing with no chance to social with anyone outside of S.

(Warning this part gets extremely off topic into my fears of next week)
While thinking about possible futures I have realised I love animals and recently a vet moved extremely close to us (there are now 2 veterinary offices within walking distance one that is a doable walk even on a not great day). I was thinking perhaps I could try to get a job there cleaning cages or something along those lines part time and then in my other time I can try to be a better “housewife” since right now I am a terrible one. In fact I had my mother over yesterday to help me do some tidying/organizing so that something got done since I will be away over a week and when I return my grandmother will be seeing our place for the first time ever (intact although I have lived with S for 4years now this will be the first time she will have ever seen anywhere we have lived... well that brings up a sore nerve... anyways). The key is although I love my grandma she has always been a little rough around the edges and often says what she wants when she wants without thinking about how soul crushing her words might be, so even if I had this place up to S's expectations of perfect (WAY above my own) she will see the problems.

With the week away being with her my walls I build up while with her would have likely been shot to hell by the time we get back here so anything she says will hit me that much harder but hopefully it will be okay. Last week I was going into a week alone with her with hope, now after talking with some people I am more worried how it will be. Either way it is going to happen and with everything that is happening with selling her house perhaps she will be so distracted or happy about it that everything will be fine.

Clearly I lost my train of thought there, but there is no going back since now my mind is overrun with how the weekend+ week at the cottage with my grandma will go. I will have to remember at the time if it does go bad that I agreed to it since I did want to spend time with her and haven’t alone in ages, but also that it was so I would be able to attend my cousin’s Bridal shower that I otherwise had no way of getting to and I really wanted to be able to be there and see her likely one last time before her wedding.

weekend to end women's Cancers

2011-03-28T15:22:00.004-04:00

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.

1st day of Endometriosis awarness month

2011-03-01T16:55:00.004-05:00

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.

Writen December 16 2010

2010-12-16T22:46:00.005-05:00

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.

having megga anxiety issues about this week.

2010-11-21T22:08:00.005-05:00

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.

Didn't expect a Support Group to be so Great

2010-05-13T23:24:00.002-04:00

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.

Lets do the Math

2010-04-22T23:44:00.003-04:00

33-(10+5)= 18

So for the last year i have been on a drug i found out about online, thats not FDA aproved but is used as birthcontrol in India. I personaly dont trust it to keep me from being a mommy but i was on it for its side effect of a longer cycle.

Before i started the medication i has a 22-25 day cycle and in that cycle there was one week to ten days of pre-period pain and crazy pms, then there was 5-9days of heavy bleeding. However after i started this medication i think even my first cycle my cycle jumped to 30-33days, and after time my bleeding days shrunk to 3-5days.

Well, now the one doctor that my mom thinks might be able to do some problem solving for us (and my very cpmplicated case) says he wont touch my case and nore would any other doctor at least not while i on this medication.

For this reason i must get off the medication and go from a longer cycle that i always knew when to expect almost to a shorter cycle with more days bleeding and no idea when my period will come.

For your info the medication i was on is named Centchroman.

Waiting

2010-04-20T16:06:00.002-04:00

I am Waiting for my period at the moment

- My Chest is so tender that the weight of a hoody is painfull if i move the wrong way.
- My abdomen is so swollen and tender that it was rather tricky to get my socks on.
- My cravings are so nasty that are growsing even me out.
- I have what feels like stiff mucles all over neck, sholders, back, lower back and hips, but i think most of it is from likely being in pain while sleeping and moving around so much.
- My back is having megga back cramps but i am putting off pain meds for now.
- My hair is greecy because i havent been able to shower since i havent been able to stand up long enough, while i didnt have more important things to do.
- My face is one huge breakout that started before my cravings but is continueing likely because of my chocolate pigging out.
- I want to see if my package came in the mail yet but who much i am hobbiling while walking i am not willing to do right now in daylight while i will likely run into multible neighbours.

Some of my Endometriosis Coping Essentials

2010-04-18T18:11:00.011-04:00

1) One of the things I have used for the longest amount of time that I find very helpful since my periods have never like clockwork even while medically regulated.
a website : www.mymonthlycycles.com
I have used it for years so I can check when my last period was and also how long I was bleeding for and also how heavy I was bleeding and I can also add notes, all those features can be used with a free account and there is no time limit on using the site, though last week I did sign up for a 6month paid account since the features paying for look worth it to at least try out (will let people how I think it is later)

2) Rice bag heating pads, anyone who has endo knows of these unless they haven’t had their period very long at all. They can be bought in crafty type stores, online, through a pharmacy or you can even make them. They can get allot hotter than any water bottle and can hold heat longer and can be used often once after the other (though this will destroy them quicker but if you do destroy them you can always open them up, fill them again with some rice from your pantry, or cherry pits .... lots of options and sew it back up. I have made many and bought many, they come in all different shapes and materials.

3) Cloth pads, I started out with these when I was 19 I believe since wearing the disposable plastic ones just seemed to annoy me so much. For people who have a 2-3day period disposables wouldn’t seem as bad but for someone with a really heavy period to the point one must wear a pad when possibly it could arrive otherwise bleed through clothing on the way to the bathroom, and then when I was younger the normal 9 days of bleeding that was allot of time with pads on, and allot of garbage. It was generally about 14days of wearing pads give or take. So I started out making some and wearing them now and then and disposables now and then also. Now I generally buy my pads and they are amazing quality that way and last for a long time (haven’t worn one out yet). With care it is possible to even have unstained ones thanks to something else on my list. Cloth pads also fold up small and wet bags can be bought to store them in. They are very comfortable and can be bought/made to fit your needs or wants.
I have bought mine from:
www.lolasloft.etsy.com/ (just bought from, haven’t yet seen or used her pads)
www.NaturallyHip.etsy.com/ (bought from before, larger really indestructible pads)
www.crea8tivemama.etsy.com/ (bought from before, small pads)

Folded:

Wings Snaped so instead of sticky wings these secure the pad to panties these hold it in place:

4) For all of my cleaning bloodstain needs, come on girls you know this happens Oxyclean powder does the trick! Now that I use cloth pads I actually have fewer leaks because I have pads the size I need so my normal clothes need less stain removing however now I have those pads to clean. For stain free items you can get bloodstains wet hopefully before they dry and then wash in the machine with some Oxyclean and no worries about washing them with other items as long as they are not white. This also works for bedding or loungewear or bed pad (I just use a huge towel double folded under me when I sleep. The fact though is Oxyclean can very often remove old dried bloodstains even in pads. Simply soak item in water for a few minutes before washing with Oxyclean. For those fearing cloth pads means ugly bloodstained pads, this is not the case. When I was soaking pads after use until washing I went over a year and a half without any stains and my pads were lighter and multicoloured. I always buy my oxyclean at costco since its the very best deal and in powder foarm since it works and is so much cheaper.

5) Disposable heat pads that are activated by air (will say on package) and NOT the ones they sell/show on lower pelvic area designed for period pain since I have always found them to be way too small. I like the ones that stick on that are for backs (however the one I will show a picture of have changed their back stickers to wraps). The wrap is nice if you plan on changing clothing often, but the stickers I generally stick to my skin or to a pain of yoga pants I am wearing. I simply use the back heat pads on my front, and although I don’t use these often I do use them when I have to me out and about while either on period or know period is coming from the pain. They help and get nice and hot and very discreet. Though I did learn this weekend that trying to save money by buying a lower name brand is not necessarily worth the savings.

will add more later but need out in the garden at the moment since pain meds finaly kicked in!

what are your endometriosis coping essentials?

quick update

2010-03-23T08:07:00.002-04:00

Last night pain would randomly show up, in fact thats the way it had been since last friday night i would randomly have pain spikes and then it would lay off.

When i learned last night that the period was for sure on its way, i made sure to set out pain meds, a juice box, a clock and a flashlight on my side of the bed so if the pain woke me up i could take care of my self rather then needing to wake up scott to get me the nessisary items.

Although i didnt wake up from pain, but rather his alarm clock i am glad i was prepared because 2seconds after i woke up my body started to reconise how much pain i was in. Now i am at the point i am on my max demerol dose (2x 50mg) every 4hours (havent hit for hours) and yet i am still in a lot of pain. I am not moving around since that makes it feel even worse.

I beleive my period showed up early but because of when the ealry pain started i thought it might be showing up early. I still have to check www.mymonthlycycles.com to check that it was forsure early though.

Its been a long time since i have done any updates so i might do a none pain/period update later today also, of resources or Endometriosis awarness month typ information.

ugh!

2010-01-08T13:39:00.003-05:00

i really only deal with one painfull thing at a time overly well.

Becayse of this i am not dealing well at the moment.

My abdomen is really very swollen, so that is painfull to have anything touching it or moving at all.

I have a cold so it seems every mucel and bone in my body hurts and is acheing.

I have hickups that are really hurting with the whole swollen and looking preggers thing.

I feel exausted even though i got 13hours of sleep (broken up but still).

And my nose wont stop running. There is a good thing about the nose though, it seems to suggest the whole body acheing might be because of a cold and not something elce messing with me so it should clear up shortly i can hope.

One Flaw In Women

2010-01-07T13:03:00.001-05:00

One Flaw In Women

Women have strengths that amaze men.....

They bear hardships and they carry burdens,

but they hold happiness, love and joy..

They smile when they want to scream.

They sing when they want to cry.

They cry when they are happy

and laugh when they are nervous.

They fight for what they believe in..

They stand up to injustice.

They don't take "no" for an answer

when they believe there is a better solution.

They go without so their family can have..

They go to the doctor with a frightened friend.

They love unconditionally..

They cry when their children excel

and cheer when their friends get awards.

They are happy when they hear about

a birth or a wedding.

Their hearts break when a friend dies.

They grieve at the loss of a family member,

yet they are strong when they

think there is no strength left.

They know that a hug and a kiss

can heal a broken heart.

Women come in all shapes, sizes and colors.

They'll drive, fly, walk, run or e-mail you

to show how much they care about you.

The heart of a woman is what

makes the world keep turning.

They bring joy, hope and love.

They have compassion and ideas.

They give moral support to their

family and friends.

Women have vital things to say

and everything to give.

HOWEVER, IF THERE IS ONE FLAW IN WOMEN,

IT IS THAT THEY FORGET THEIR WORTH.

Still waiting for the blood to flow

2009-12-16T14:24:00.003-05:00

I an at that point or close to where this would be less annoying if i was acturaly bleeding or the blood showed up.

It still feels like i might get my period any minute, and yet still nothing (it comes and goes in waves, sorta. at times i feel okay, mostly if feels like period is due.)

I think if i end up in much pain come the weekend (family dinner) i will stay home since after i learned how much i aparently upset people i care about lately, i dont want to risk doing that again while there and on demerol and dumb with what i say/ how i talk and how i act. so i think if i need pain meds, or at least much i wont go....

though i worry they will take that personaly also. uhg. i just dont want people i love dislikeing me because i on mistake interupt and such things. Things i dont mean to do but cant seem to stop myself from doing when medicated.

I am still mad craving and teary.

Perhaps if pain dies down, or i give into meds i will go to groshery store to get some pasta sauce mixes (herbs that mix with water and oil) to put on my rice pasta so i dont have a meltdown tonight.

I love the ferguson family, and dont want to offend them at all so perhaps takeing myself out of the situation is the best way. At least when i am not thinking clearly.

2009-12-10T16:50:00.002-05:00

i am awake though i should be sleeping right now. The reason, my body is a little confused.

I am getting the feelings my period might show up any minute since 8am today... except its not due for another 10 days (and not even naturaly, but because of medication i take, that i havent forgotten to take)

So for that reason i am on my laptop trying to stay quiet to let scott sleep. One oft the things i am doing is looking up recepies on my fave recepie site, somehow i ended up loged out and cant get back in since i have no idea my user name. Sucks because i have alot of things saved to that account that i have no where elce. Hopefully i will find a way to get my username.

dumb body. it feels like i will be bleeding at any moment.

Hates her life at the moment, or at least her bladder.

2009-12-06T19:15:00.003-05:00

We just swtiched to nights since that is Scotts shift this week (though ended up early).

I just got out of bes at 6:40, it is now 7:15
So far, i have had to urinate 8 times.

First time was extreamly painfull (tears came, as was 2nd and third) still painfull but now some tears are only comming from the frustration.

Its looking like this is going to be a REALLY long day. When we go downstairs i think i will try being on the couch with my feet up, sometimes that seems to help slighty.

oh i wish i had those new meds i havent yet fully explained but havent been able to fill the perscription for since no compounding pharmacist handy. UGH!

To many updates for the moment

2009-12-04T12:58:00.003-05:00

I have al lot of updates, but no time for them at the moment.

Updates include topics such as Scott (the love of my life), my bladder, my back, my pain, diet changes, plans, new drug prescribes I haven’t been able to fill just yet.

First off, I have a tens unit that someone gave me from free cycle (www.freecycle.org) that is enough to know they work, in fact used to work well. Now I need it to be stronger then the max strength seems to be capable of.

My back has been cramping loads lately, but it’s really low like in my hips sort of. TENS is on now and helping a little but not much and to be fair the back is generally better when I sit then standing. Even more specific then that my back is worse if I straighten the leg on whatever side it is affecting (learned that in bed the other morning). So saying it’s doing okay at the moment is not truly fair, the fact is I need a better one. I think its number one on my wish list for Christmas at this moment at least. Perhaps should point that out to Scott who seems to think I will do what I did last year again for him (go shopping with him 3days before Christmas and pick all my own gifts and then let him pay), it’s SO not happening this year. He can try on his own, I have made him loads of lists and where to get items, even stocking items so there should be no issues (and I use the places that are handy).

I still have to get him one more gift that on my mind but haven’t gotten to it yet, perhaps tomorrow I will.

Today I have been making, well starting the process of making truffles. That always fun, the next step is the messy one.

I have to convince myself to go out to the grocery store. It’s cold and I have no interest in that at the moment. I also have to find all library books so I can return them and pay fines today.

I hurt, I would like to take a Demerol for front pain but haven’t had any since Sunday night (half a pill), and would like to continue on this way. Not the being in pain, but being able to avoid the pain meds (other than my once daily). I think I shall out off shopping for a little bit at least and do some things in the living room that don’t evolve much moving for the sake of my back cramps, and my pelvic pain. Oh I can’t WAIT to try the new med (I know I just said I like avoiding meds, but this one is different. It should not affect my head/mood/thinking at all) It should help with pelvic pain and the bladder issues also very likely.

Though, I just realised one thing. Although it won’t likely effect my head at all it might still likely make climaxing difficult, just not in the way Demerol does (Demerol makes it so that it feels good but the brain/nerve connections needed to orgasm just can’t quite be made) where as this med might make feelings less pronounced. Who knows though?

Bladder, fuck off!

2009-11-20T14:04:00.003-05:00

So this is day 3 my bladder is being a prick.

It would be really nice not to have to pee every 2-10minutes. That would be really nice.

Though i should be glas i dont have to pee that often and also have intence pain every time i pee like i had earlyer today for a couple hours.

Certainly does make going out sorta tricky, or at least dressing normal.

Scratch that, it still hurts to pee just not as bad. I am also in alot of endo pain right now to, so on max demerol. fun wow... not.

Yesterday i took more then perscribed demerol and was still crying from the pain (reolised later last night when i looked at the times i took them). Life can be a bitch sometimes!

The plan is to try to get out of the house before scott gets home so he can have some alone time that he seems to need these days. This mentod works best i think since i dont see him walk in the door and then have him take off as though he doesnt want to be around me, if i am not there when he gets home it cant really bug me. Even when i do get back in and he is still off on his own its jusy as though he isnt home yet, and not that he is avoiding me.

Christmas might still be okay!

2009-11-18T11:50:00.003-05:00

Aright,

I have personal "good news" and bad news haha.

Good news is now that I did the math today it appears that although I will have my period on Christmas it should show up days before Christmas eve day (our Christmas with Scott’s family) and Christmas and boxing day (our time with my family).

This math only could be figured out today though, seeing as my period came early.

Today it came. Although my cycle is longer than most women now, and much longer than my natural cycle, it wasn’t as long this time as it generally is while on my experimental drug. That drug is Centchroman, and since I am now stuck on my back today I should post about it. Anyways though my point is my cycle on that drug is generally 33 days. Today marked only 30 though. This is still a great improvement over my natural cycle of 24-26days and an impressive jump from what my cycle was only a 4years ago of 16-19 days.

So, yay I won’t necessarily feel like crap on Christmas :)

I HATE MY BLADDER

2009-11-18T08:15:00.001-05:00

so i been trying this new med to help with bladder issues

update so far USELESS.

worst eppisode in about a month, right this moment.

UGHGHGHGHGHGHGHGHGHGHGHGGHGHGHGHGHGHGGHGHG

i HATE by inners. i say inners because althought its just bladder really bad right now pain is starting to get worse and is due to spike with period tomorrow or friday.

Also if i did the math right my next really bad pain spell / crippling period will start on christmas eve... fucking joy.

i love chirstmas, way to very likely fuck it up body.

So this is the micro-mini update about the cystoscopy appointment.

2009-11-07T09:45:00.002-05:00

Basically, it was absolutely horrible. First issue was I was scared, the pain doc suggested I take Demerol prior to the procedure since he thought it would help me mellow out. Well turned out that day I was in pain anyways so I ended up on max Demerol before the procedure.

Good fucking thing to, since who did my cystocopy? A student, who I firmly believe never, did one before in his life since he asked the nurse how to do EVERYTHING. She also kept pointing out when he was messing up, but wouldn’t get the hint. Like when he over filled my bladder on 3 different occasions, and the overfilling stretched my bladder to the point I was internal bleeding. That of course made it harder to see inside if there was any blood in their without his doing.
So the procedure was extremely painful, but mainly only because the doctor had no idea what he was doing (that’s my guess at least). Then the main doc (the teacher) came in, pointed out some of the goofs the student made to him (the ones he could tell since I was clearly bleeding from his students work). He looked around inside. Then later we all met in his office and he informed me that although I am having so many weird symptoms that sound like IC he can’t actually diagnose it or anything since there was no proof of anything inside.

So I left then to go get my kidneys ultra sounded to see if there was anything weird there. There wasn’t. So there is no explanation for my issues, but he gave me a drug to help with the frequency issue (yet to try it) since it seems weird to treat one of like 5bad urinary issue symptoms and ignore the others and have no answers.
Then I got home, and had to pee... well I guess because of the tearing he did or something I kind of seemed to scab inside. So when I tried to pee it hurt more then I think any pain I have ever felt (and I have endo lol). I literally had to bite down on a towel in order to manage the pain of trying to pee.

Then came the blood.

Luckily by the next evening the bleeding from my urethra stopped.

cystoscopy countdown

2009-10-07T06:53:00.002-04:00

I am trying to remain calm; I have done amazingly well until this morning at 4:45 when I woke up fully on my own half due to stressing I think and the other half from pain that is likely in part due to the stress (love life haha).

Today is the day I have in theory be “waiting for” for over a year and a half now. That is a fucking long time if you think about it, it’s sad that it’s taken till now for doctors to possibly figure out what is wrong/not wrong with my bladder and why I have such issues with it and pain along with said issues.

When I say “waiting for” I haven’t really been waiting for today, I have been waiting for a doctor to take me seriously, my issues are something that even shocked the urologist when I saw one for the first time a month ago. He wondered why I hadn’t been sent to him sooner and I explained that no one seemed to care. I tried to make the docs understand, and so did my mother to no effect. It actually took my being with my grandmother for a week (after warning her that she might not be able to make/keep plans) while I was there due to either my pain or my bladder, and then witnessing the issues all week long, and getting so frustrated that she ended up on the phone with my gynaecologist (my Endo specialist) who didn’t seem to care that there is often blood in my urine. After that he finally referred me to a specialist.

So today is the day I see the urologist doctors at Sunnybrook hospital in Toronto again, and have a procedure done. The reason I am stressing and nauseated at the moment is the thought of that procedure. I will be having a cystoscopy sometime this afternoon. For many people I am sure they have had one and it was no big deal, but since the reason I am having one is that my bladder/urethra =pain to me the thought of them shoving a camera/tube up it is not exactly happy. Then add that my understanding of this procedure means they will also fill my bladder (another painful thing for me) while looking around inside also not exactly joy inspiring.

All this will be done with only local freezing so I get to be completely alert! Joy. Though last week when I asked my pain doctor about how a cystoscopy happens he explained to me and I them mentioned my anxiety and asked if they will be giving me anything to relax me, he said no. Now I was more worried, but he sat and thought for a minute (I was hoping if I mentioned this issue to him he might come up with a solution perhaps prescribe me one pill of something to calm me down) well he concluded that what I should do was take Demerol before my appointment, even if I wasn’t needing it for pain. Though looking at the past couple of days I will likely already be on Demerol for pain, but I might take a second one for the purpose of calming me down so I don’t kick any doctors.

The other thing is besides the procedure there are many things that might be involved today that I am uncomfortable with. Believe it or not I do not enjoy being exposed not even to doctors (and far too many have seen my girly bits over the years). I hate hospital gowns. But I think aside from the actual procedure my biggest fear from what I have heard might be entailed is that the nurses might shave me before the procedure. Scott when I confessed this fear to him asked why I don’t do it myself, and I said well honestly even if I do it might not be well enough to make them happy. The more important issue is my skin is being really sensitive this week so if I shave unneeded it won’t be nice, but if they shave me it might be doubly not nice. Who knows?

The interesting thing about all this is that by the end of today I might know why I have such issues with my bladder and might be told how to treat the issues. That could be awesome. The other interesting this is that for the past 3days I had to keep a “urinary diary” and because of this I have gotten a very good idea as to how much is the max my bladder can hold. Or at least hold before it starts hurting due to pushing on other things inside me or stretching. The thing that worried me though is for my diary my bladder has been on decently good behaviour, making me of course look like a liar (though it often goes for days and days between times where it causes me frequency issues like ever 10minutes) but still, but then just now it started to pull its same old crap so today’s diary might show a slight window into how my bladder can also prevent me from leaving the house at times.

So as it stands if the apointment is on time it could be as little as 5hours untill the dreaded cystoscopy. ugh!

The delicate balance within the body, and how medication effects it (part 1)

2009-09-26T16:58:00.003-04:00

Warning this post contains too much info in aspects so if you don’t want to know the nitty gritty stuff, please skip.

The body is a funny thing.
To remain healthy, is a very delicate balance between a great numbers of things.
Chronic of any kind upsets the balance, as does being over worked or lack of sleep. This is because the body is over worked. When I was working fulltime, even over time in freezing conditions (but with fluctuation in temperature changes because of working in trailers and then back into the main building during the winter) with less than 7hours sleep nightly I was far more “healthy” then I am today. My immune system was far better those days (this was before the chronic pain began so sever). Now I get far more sleep, am not exposed to temperature fluctuations nor barely the germs of others since I hardly get out. Yet when I do get sick I remain with a cold longer, any infection holds fast. If I am exposed to children it almost seems a guarantee that I will catch a cold within a week.

This I can only take is that although I have way less obvious things wearing at me, the constant nagging pain within me is what upsets the balance within me. Leaving me with a delightfully useless immune system, more so aggravating because in my teens (other than the year I was in chronic pain) my immune system was actually rather great.

Other things upset the balance to people in general. This is why often medications can seem worse than the sickness.

*If you have examples please feel free to comment about them, my mind is only focused on the things I know myself today.*

With a low immune system something that should not necessarily cause infection often will and then despite best efforts to make the infection disappear it will persist for a long time. By best efforts on the use of my toe for example, I mean using antibiotic creams, soaking my foot in Epson salts, letting it breath and not putting it in tight shoes (I once again have an ingrown toenail, and it of course is infected and has been now for 2 weeks I think gross I know, I am the one living with it!).

So now if you lack endometriosis, or have a strong immune system you likely wonder well why doesn’t she just go to the doctors and get prescribed an antibiotic.
Well there are 2 reasons, one is the main point of this post however the other too is important to think about. Antibiotics are prescribed constantly (not the point of post reason), for years people managed without them, and yes I know in those years people did die also, but now we seem to prescribe antibiotics for things that people dealt with perfectly fine 150years ago. When I was a child I had recurrent ear infections, or at least ear pressure (now I wonder what it truly was since when I go to the doctor now with the exact same pain I am told it is simply pressure build up from having a cold) but anyways, because of my constant ear “infections” I was always given antibiotics, more precisely I was given that miracle drug known as penicillin. Well that’s all well and good and each time it made me better or I got better (I was so little I really don’t know what one applies).

The thing is, I had so much penicillin as a child, and I now have to tell doctors to prescribe me something else when I do have an infection that needs to be treated. This is because my body no longer responds to penicillin; I had too much as a child. I also know I am allergic to another antibiotic (though I stupidly have no idea what one); I was given it for when I had strep throat last summer. While taking it I realised by a full body rash and itching that I was allergic to it, however after consulting with the pharmacist and learning that even if I had an allergy that it would still treat the infection I resided to finish the treatment since I was already 1/3 of the way through. He said as long as I didn’t have any reaction in my mouth/throat or having problems breathing I could continue to take it if I chose. I did this because of my next point.

Antibiotics help with infections, however they often cause a yeast imbalance in the body there for causing a yeast “infection” I quote infection because although it takes over antibiotics will not help it they often are the cause, antifungal are what help with yeast. Yeast is in fact a fungus (Beer does not become infected to become beer; it in fact starts growing a fungus). Yeast imbalance can affect many places besides where people assume it does (your vagina). Babies often get a yeast imbalance; their tongs become coated in this white substance and often to their lower regions become raw/sensitive. In adults it is more common to have uncomfortable lower regions along with unhappy discharge but also things as simple as itchy underarms can occur.

Hers where my issue lies, my immune system is the pits so now and then I will get an infection that I will try to fight without medication but if I take the medication I now have an issue with yeast, and once again because of my crappy immune system it is unlikely to balance itself out. So then the theory is I now need medication to deal with the yeast, but because of how the medication works and because of my immune system I now have to take 2times the normal dose. So my question is what will I do when this treatment no longer works for me because my body has become used to it? This is why I try my hardest to deal with the issue in alternative ways; so that I don’t have yet another medication my body has a tolerance towards.

So there is my rant as to why I lay here with an infected toe. Though I think I found the solution though it may take another week. Tea Tee Oil, it not only has antifungal properties (so good for yeast issues also) but also works and an antiseptic so that along with the Epson salts soaks and it should be cleared up (the infection) however the issue will remain but hopefully I can do something to my toenail so that it will strop growing into the toe itself and causing these issues.

Memento the movie got me thinking about how i must find my own way to do things dispite my illness (not that i havent tried time and time again,)

2009-09-24T14:39:00.005-04:00

Must try harder, will come up with a list tonight perhaps. a schedual of sorts.

I must learn to do things better. I have to find a system that works for me.
This is about getting needed things around the house done; cleaning, meals, laundry as well as my own personal care. I have to find a way to make things work better for me.

I might later if not feeling well (who knows, not bad now) listen to the archived radio brodcast of invisible illness week about housework, but i get the hinting suspition it will be something along the lines of "clean, and if you get stoped by your illness pray, then clean some more"

Dont get me wrong, i like that i have found that site, but i dont beleive in god. These people however do, STRONGLY its a little tireing. I am betting if i could beleive in god i might not be so bitter about my illness, but i have tried before and time again and i simply can not beleive in god.

I am not knocking those who do, since as i said its likely very helpfull to. I just simply can not.

not coping well today + i know my own body

2009-09-17T14:45:00.004-04:00

I am not coping well today. Either pain is overthrowing the pain meds, or the pain meds are overthrowing me it would seem. Couldn’t there be balance, you know where the pain meds took away pain, but didn’t make me a stumbling bumbling idiot who can’t even get herself something to eat OR stop scratching. (Yes, for some reason the Demerol seems to be making me itchy today, for the first time ever. Though this is not the first time this has happened with pain meds, Percocet used to always cause this issue to the extend I would scratch till my arms or legs were bleeding)

I am also frustrated because I feel gross and I want to shower, but I am not sure if I am sturdy enough to stand in the shower. I could have a bath, but baths don’t necessarily leave me feeling clean unless I can shower off afterwards. And considering how things are today, I would only want a bath if I could easily use a shower hose to wash out the tub afterwards... however as amazing as our tub is, there is now shower connected to it. So that’s out.

Ugh. I get frustrated at these times.
-------------------------------------------------------------------------------------------------------------------------------------

Well as it turns out I do know my body.

Though with the use of the one medication (that in I think my last post I said my body seemed to be fighting) my period should have been due on Sunday the 20th or Monday the 21st.

Yesterday however, my pain was mounting. Then my period started and the pain spiked really quickly. By the time my period had truly started I was already on max Demerol on top of my daily Tramadol. It wasn’t enough though; there was a solid hour I was withering in pain on the couch balling my eyes out in way to much pain. The pain was shooting down into my legs. (It is because one of the nerves in your abdomen, is connected/roots into your thy) So anyways I was very unhappy last night, the pain calmed down slightly so I could watch a movie with Scott without distracting him with my cries to too often.

Bedtime came and some meds were starting to wear off so pain was starting to come back. On the flip side more meds would have meant I wouldn’t likely be able to sleep due to the meds, and if I did sleep on the meds it would be a waste of meds in a way. I can often sleep even if I am in a great deal of pain, so if I can I try to. Sleeping is how I can sometimes avoid taking pain medication.

The issue was it was a huge balancing act, I had to be asleep before the pain got too strong and yet the pain was already interfering with my being able to fall asleep. I managed to get to sleep likely after about an hour of laying there with my heat pad on my abdomen, cuddling with Scott and breathing to try to calm down. Though last night I will admit I did cry myself to sleep due to the pain.

I also woke up very frequently to pain and was sleeping lightly I know since Scott rolling over in bed was enough to wake me up many times, and then I would once again notice all the pain and have issues getting back to sleep. When morning came with the sound of Scott’s alarm I was afraid to ask him how he slept. Often when I sleep this poorly due to pain, he does also because he wakes to my whimpers or crying (either in my sleep or awake) and my fussing to get comfortable (an impossible task). This is way when I know I can’t sleep, or figure I won’t sleep well I at times will just stay up on my computer or watch TV and let him go to bed so at least one of us get a good night’s sleep.

I do have happy thoughts about when we have the spare room set up though. I need the holding and cuddling when I am feeling poorly, but then Scott falls asleep and rolls over, so that often when I get up and go downstairs if I am too fussy to sleep as not to disturb his sleep. However if we had the spare room set up those nights that I am exhausted and think I can get to sleep, but unable to sleep soundly/let him get rest I could simply go sleep in the spare room. I find I can’t sleep on the couch so I never really do.

Turned out this morning that Scott had slept rather well considering, morning came too early but it always does. I hope he actually did sleep well and he wasn’t just saying that so I wouldn’t feel so guilty

Today is the first day of invisible illness awareness week September 14-20 2009

2009-09-14T14:21:00.003-04:00

Today is the first day of invisible illness awareness week September 14-20 2009

http://invisibleillnessweek.com/

I live everyday with an invisible illness, a disease called Endometriosis.

The cause for this disease is still unknown.

Endometriosis at a Glance
•Endometriosis is the growth of endometrial tissue (cells that normally grow inside the uterus (womb), but in a location outside of the uterus. Endometriosis is most commonly found on other organs of the pelvis.
•The exact cause of endometriosis has not been identified.
•Endometriosis is more common in women who are experiencing infertility than in fertile women, but the condition does not fully prevent conception.
•Most women with endometriosis have no symptoms, in which case therapy is neither appropriate nor necessary.
•Pelvic pain during menstruation or ovulation can be a symptom of endometriosis, but may also occur in normal women.
•Endometriosis can be suspected by the practitioner by the woman's pattern of symptoms, and sometimes during a physical examination, but the definite diagnosis is confirmed by surgery, usually laparoscopy.
•Treatment of endometriosis includes medication and surgery for both pain relief and treatment of infertility if pregnancy is desired.

treatment of infertility if pregnancy is desired.

www.endometriosisassn.org

“Endometriosis is a painful, chronic disease that affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.

This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.”

For some women Endometriosis mainly effects them at or prior to and at “that time of the month” However for a large group of women they suffer from pain at all times that increases “that time of the month”.

For years I was only badly affected by Endo about 13days out of 30. Now I am affected to the point it affects me each and every day.

Endometriosis can affect women in many ways more than just pain!

“Some women experience pain or cramping with intercourse, bowel movements and/or urination. Even pelvic examination by a doctor can be painful. The pain intensity can change from month to month, and vary greatly among women. Some women experience progressive worsening of symptoms, while others can have resolution of pain without treatment.”

Examples of other such things it can cause:
Infertility, extreme fatigue, other gastrointestinal upsets such as diarrhea, constipation, nausea. Other things many women suffer from include allergies, chemical sensitive’s and frequent yeast infections, weak immune systems, low back pain/cramps, irregular or heavy bleeding, blood in the urine.

Many women with endometriosis also find themselves with a diagnosis of inter cystitis. I do not know/understand enough to know Endometriosis causes the IC or not. Though I have a feeling Women who have endometriosis on their bladder (that cannot be removed surgically because this could perforate the bladder) are more likely to have either bladder issues or IC.

“Rare symptoms of endometriosis include chest pain or coughing blood due to endometriosis in the lungs and headache and/or seizures due to endometriosis in the brain.”

Pelvic pain in women with endometriosis depends partly on where the implants of endometriosis are located.

•Deeper implants and implants in areas with many pain-sensing nerves may be more likely to produce pain.
•The implants may also produce substances that circulate in the bloodstream and cause pain.
•Lastly, pain can result when endometriosis implants form scars. There is no relationship between severity of pain and how widespread the endometriosis is (the "stage" of endometriosis).

I am not going to go into endometriosis “treatments” since I am not in the mood to try to explain that, nor are they at all effective for everyone, in cases (like me) each medication treatment made things worse for me, surgery helped but only once and now causes no effect.

Oh Nausea

2009-09-10T15:30:00.002-04:00

oh nausea, how i hate you.

this whole teeth clenching, hair tied up in a bun, unable do anything but lay down level is getting rather old this afternoon.

I am to warm, or i am to cold this too is not helping with nausea.

Perhaps a high cal chocolate milk thats in the fridge MIGHT help, but i cant get there because of the NAUSEA! awsome. really it is.

Hopefully my sweetheart is home soon and can tell me of his day, he could be a great distraction from how i feel.

At least yesterday was semi-productive

2009-09-10T12:19:00.003-04:00

Yesterday was a good day, pain wise at least. I managed to get a fair amount done the house for once, and cooked dinner on top of it all (and it was even good! Baked chicken works far better than fried chicken for me that’s for sure.) Though I couldn’t eat all day due to nausea, but that was from worry not the pain. Well it was from pain and fear but of a different sort.

I am glad I got done what I did yesterday because today pain is paying me back it seems, and a double helping of nausea today.

I am worried and scared about things, but I am too scared to bring things up to possibly have things either confirmed, or learn I am worried for nothing?

If I could take pain meds I might be able to get some things done, but I basically used up the week’s worth of pain meds while at the cottage Thursday night through Sunday afternoon. Simply so I could function decently and not hear comments from some family members who like to point out the lack of movement or activity I do, how I sit in pain and start pestering me again about a hysto. I also wanted to go to the corn roast that happens at the cottage, and without medication I would have been unable to go and be social at all, as it stands I am thankful my aunt drove to the corn roast since the walk both ways would have been too much.

Though at the corn roast I remembered why I tend to avoid social situations. When you don’t work, or go to school or have anything concrete to do each day it is hard to talk to others. When they ask how you are doing because they know you have had issues and you have nothing positive to say it clearly makes the person you are speaking to as uncomfortable as you yourself feel. This doesn’t change the fact I am glad I went however. The corn was good, and it was good to try to act like a normal person.

So my point is I cannot take meds I don’t really have, because I have already taken more then I can and still have enough for my worst days ahead, let’s just hope it isn’t that bad this time around. I also hold out on pain meds throughout the day when I can so I can use them in the evenings so I can be in less pain and therefore a better mood, also more able to function to do such things as cooking dinner.

The thought of having enough control over my pain that I could function normally, not have to “save up” pills for worse days and not have to lay on the couch in order to be able to cook later would be wonderful. The issue stands with my current pain doctor, in his eyes my pain should be completely under control as it stands, and since it is not if I complain he starts saying I am addicted to the medication (despite my going off for weeks when he told me to!). It’s just so frustrating.

My one doctor did however tell me he would send a note to a pain doctor I had heard of in Hamilton (closer, and also an apparently wonderful doctor). I know he deals with Endometriosis pain along with fibro (though I don’t have fibro) the woman I spoke to about him told me if I saw him I wouldn’t have pain, and I would be able to be ME again! (Well me with less IQ points likely because that’s the way I find pain medications act). But if I wasn’t in pain I could work, and be more social! It would mean I and S could then be more social with others even or so I hope.

Don’t get me wrong I am glad I am in Canada where most all health care is covered! But is it so much to ask for a doctor who listens to me, and knows about Endo pain (doesn’t just ask if I have tried Midol before!!!!!) instead of only seeming to focus on nerve damage pain, that we have now ruled out in my case between nerve blocks over months and drugs for neuropathic pain.

UGH!

2009-08-26T10:51:00.002-04:00

i would just like to say (or rather screem, but my horsey voice from a cold wont allow) WTF!

So i was at the hospital last night, In hamalton, mainly because i cant seem to get any referals these days and we know theres a good endocronolygest who works out of there, and a good urolygest (will spell check this post later if i can) and we know a good pain doc works in halmolton also.

That and pain started to flare up bad while on way home.\

So anyways my bladder issue bugs me a little each morning when i have a full bladder, but a managable amount. so last night as they were running all these tests on me i learned, i do NOT have a bladder infection, and there wasnt even blood in my urin at the time (yay?). So then because my body is a compleate asshole....

I wake up today and my bladder thing is as bad feeling as it ever gets (last time was march i think that it got this bad.) JOY. i guess the good news is it might still be messing up come urolygest apointment on the 30/31 if he doesnt cancel my apointment a 3rd time....... (did i mention this has been an issue since arpil 2008, that was mentioned to doctors come may 2008 and this is the first time i will posibly be seeing a doctor about my extream UTI sympotoms (pain, burning, urgency, blood in urin, CLOTS in urin, pelvic pain related to it, pain emtying bladder, pain with full bladder, EXT!!!!)

i am mighty annoyed, i had hoped i would have a good day today after yesterdays surpize suckfest.

My time at the hospital was compleatly useless other then i learned, i dont have a UTI, or a bowel blockage (they worried due to pain), or get any releife from toridol shots (though this is the 2nd time this week i learned that)

I also learned if you go to the hospital with a mild fever, even if mild cold they make you wear a mask the entire time, and when you get a room they put you in "isolation" ... fun.

another teary day

2009-08-20T15:08:00.002-04:00

My pain is not only destroying me. It has been crapping all over my life for a while now, but now it is crapping on the only thing good in my life.

I don’t know how to make it not ruin anything more, other than stop being in pain, and stop being on pain meds. The problem there is I have tried lots to not be in pain, and the other options are terrifying to me. The other issue is even if they do work; their side effects would likely make me loose Scott.

Since as depressed as I am now, I know it is nothing compared to what happens when my hormones are messed with. No one wants to be around me then, not even my own parents. I turn into a suicidal monster of a person.

On the other hand going as I am is ruining things also. I can’t think about the future, I do when I am day dreaming, but in it I am always healthy again. When will that future happen? Scott can no longer see the future either, my pain is eating him.

I love Scott so much, yet the pain I have is not only ruining things for me anymore but for us.
My next pain management appointment is in a couple weeks I believe. In a perfect world I could walk in and tell him the pain is still crippling me and ruining my life and that we need to do something about it so I can function like a “normal” person. The reality is I will go and he will refill my prescriptions if I am lucky, (he I believe will refill my Tramadol, but unsure about Demerol since it is my old family doc who would normally prescribe it).

I need less pain. Less pain would make it so I could do more, help around the house more, get a job, and be a better person. Less pain would mean I would be less depressed. Less pain would likely mean I wouldn’t fear the things I am, the things that if pain stays it sounds like will happen.

-----------------------------------------------------------------------------------------------

I am laying here on max Demerol still in allot of pain (max Demerol on top of Tramadol) with a heating pad on my lap. I think if it gets worse later today I will taxi it to the local hospital perhaps they can give me a few hours without pain, and a few solid minutes of sleep. This will give me a break, but depending when I go it might also give Scott a break.

I barley slept last night even though I was beyond exhausted, took me over an hour and a half to fall asleep. Then I woke up loads of times because of pain, once at 8am (were on afternoons so that is the middle of the night for us) to the point I was crying from the pain, but was in too much pain to move or do anything about it, and Scott looked asleep so I couldn’t bug him. Somehow I fell back asleep till 12, at that point I hobbled down the stairs and took a Demerol and as it kicked in I fell back asleep for a few minutes then woke up again from another pain surge. This time the alarm was going and Scott was not in bed. Turns out he barley slept at all last night either because of my pain and whimpering and moving around. Tonight if pain as bad, I told him I would sleep on the couch, so he can get some decent sleep. He needs his sleep seeing as he works hard all week, and hard around here. Then he looks after me, I am worse in neediness then a child and he has always said he didn’t want a child (he did not say those things together, I am the one making those parallels).

Not going to lie, moments like this the thought of cutting out my inners is welcomed while they cause me this much pain, I often joke about it. The reality of that idea is far different when I am not on so much Demerol and still unable to move.

2009-07-31T13:27:00.002-04:00

I am getting frustrated by life.
I am trying to start up an etsy account so thats good.

But other things are starting to worry me, i am bringing scott down i fear.

this weekend is the bbq, tomorrow if all goes as planned. lets all hope i am acturaly feeling good!

then sunday mornign early we drive to lindsay, and help do some sorting with parents of my late grandmothers house.

i should try to move, and tidy the entire living room and the kitchen some, since my always having a mess apprently really bugs scott.

tomorrow will be the first time since i am on my new meds (unable to drink) that i will be around multiple people drinking, and likely more then one beer each. that should be fun.. really.

now to clean as much as i can. lets hope its knowtesed.

Overall, the day stayed good,

2009-07-20T18:38:00.003-04:00

Brownies, weren’t quite sweet enough, tater tot casserole wasn’t thrilling (edible for sure) just not exciting

The point, I hurt.
I think it’s just mean in contrast to most of the day.
Though pain started creeping a bit by about 4pm. and now it’s getting annoying. Very annoying
I think I might have to toy around with when to talked my Tramadol pill each day, since I am getting the feeling my evening pain peaks are at least in part due to the tramadol from the night before wearing off. (Took me 4 weeks to reolize this)

Anyways, last week I was taking them at about 3pm each day and I was for sure observing more pain abound 1pmish. This week I was trying to move the pill to closer to 8 or 9 pm. This however creates another problem (that will be too much info if you know me/Scott very likely. but oh well)
Tonight I took the pill slightly earlier seeing as I felt the pain creeping and was hoping the good day I was having would continue. I was also hoping I could well, have a sex life (what a concept) without needing any pain meds to make it be able to be enjoyable for me.

That the issue though, if I push taking the pill to later at night, it means my pain surge will be later at night (fine if I am asleep, but surge comes before I take the pill. So therefore I am awake). On the other hand if I let it run out about the time I am getting up, I will want to die rather then get out of bed (I know, I remember how much worse morning pain was before this pill. THAT and I have forgotten a pill twice so was very much reminded come morning and the tears from pain.

Dr. M was being a tool last I saw him. He asked "well what causes you pain?" (And no not in a doctor way, if he was doing that it would be fine, but he never really has and I have seen him every 2 weeks since February. I have told him, but he has never asked)
So he was being a jerk when he asked, all snarkiest. And I answered I didn’t know.
Because, in my head what causes me the MOST pain was only worth listing since I am always in pain and almost anything can cause a pain increase.

Next time I see him however, I think I will give him a list. So I shall start now, and write down some of the things I was trying to make light of while talking to Scott about the other morning in bed curled up in a ball in pain.

Things that cause an increase in pain levels:

~Stress
~Full bladder
~Emptying bladder
~Stairs
~Carrying anything
~Standing (sometimes it doesn’t, most times it does)
~Walking (it makes me use abdominal muscles and that always causes pain) sometimes also the ligaments inside are in pain or near ovaries so therefore the actual motion of walking can be excruciating
~Laughing! (Though hurts less with tramadol YAY)
~Having an orgasm (yes, life DOES suck)
~Eating to quick
~Riding in a car (bumps cause more pain to increase)
~When my abdomen swells (to the point i look 6+months preggers) for no aparent reason (no i have not yet been able to identify what exactly sets off the swelling, however i have learned perscription anti-inflametories do jack all for it (and yet advil liquid jells do somethign slightly, not much... but more than the other drugs)

A Good Day

2009-07-20T13:31:00.002-04:00

Today is a rare bird, it is a good day. My pain is very low and with the help of Tramadol (long lasting daily painkiller) I am having a very good day. So rarely am I able to accomplish things, and more rarely do I post anything positive on here.

I started out killing time sewing bloomers I promised Nicole to match one of the two “pillow case” dresses I made for Madalynn. I knew the first place i wanted to stop today if I was feeling up to it would be the very local Zehrs, but it wouldn’t open for another hour and a half. Before leaving for my walk with the awesome cart my mom bought me for when I was in Toronto with an apartment a couple flights up (it climes stairs), I started a load of laundry, and washed some dishes along with starting the dishwasher (I love me new kickass dishwasher, since it saves more water cleaning most dishes then I would).

At the store I was looking for toys. We made plans last night that Nicole and Keith and the children would be coming over next Sunday afternoon. Well, since Scott was buying something off of Keith, Keith and Shane (oldest nephew) came over and as the guys chatted out front and I tried to keep Shane busy I was quickly reminded that although we have loads of “toys” here, very few a child can touch since they are model cars, or hot wheels that have been collected, of Meccano that is Scott's. I also quickly realised as Shane kept asking to play on the play station that we don’t likely own one game that is acceptable for a 5year old to play. So my Idea was to put something on the TV and keep an eye on him. Well... we don’t exactly have DVD’s that a child would want to watch. I have some VHS, but a) they are still packed b) I haven’t used the VCR since Scott set it up differently so I am not sure what settings must be chosen in order to make it play. So, point is I put in scoots futurism DVD since it was at least a cartoon and did grab Shane’s attention. So last night was a very vivid reminder we need tops here the three munchkins can actually play with safely.

At Zehrs there were toys but I was disappointed with the selection that was there, however I spotted an “outdoor set” a mini soccer ball, football and a few other things that the boys could enjoy playing with in the backyard. I also found a Sippy Cup for Maddie so that is one less thing they have to bring with them, along with some groceries I know I would need later this week and snacks/treats for when the munchkins are here. I also figured out what to make for dinner, I am going to try tater tot casserole.

Next I stopped by at another store and picked up some figurines and other items. Along with the cups I know Michael uses that are almost spill proof (they I saw as I was paying) and black ribbon that I had hoped to find to go along with the dark purple material I have.

Since I got home I put everything away that I bought all the newly clean dishes and tidied up. And Put together a brownie recipe that is right now in the oven that I wanted to test. (http://allrecipes.com/Recipe/Double-Fudge-Brownie-Mix/Detail.aspx?strb=1&washelp=1&rid=1812689#1812689)

Hopefully soon, I will post some pics of my most recent sewing endeavours, along with comments on how the brownies turned out, and how tonight’s tater top casserole does.

Endometriosis and Sexual Identity

2009-07-19T12:20:00.004-04:00

Written by Melissa Ralston:
(http://endobattle.blogspot.com/2009/07/for-my-non-endometriosis-friends-who.html)

For my non-endometriosis friends who are going to read this, this is a glimpse into what it can be like for us women living with the disease which is intrinsically linked to our reproductive organs, and through that back to our sexual identity. As you may not be aware, one of the symptoms of endometriosis is painful sex. It could be pain during the arousal stage, during the act of penetration, or anything afterwards. The sad thing is, there is not too much written on this taboo subject as it's not "kosher" to describe our sex lives. However, our physical intimacy habits are often linked to our self concept, our self esteem and how we can express ourselves. If you're still brave enough to be reading this, kudos to you.

A Look at Our Human Needs

In looking at Maslow's Hierarchy of Human Needs we can see that under one of the basic needs we have in this life is sex. If we move up his ladder of human needs, we can also see that under psychological needs we have a need for intimacy. In a heterosexual relationship (I can't speak for homosexual relationships as I haven't studied them in depth), our needs for sex and intimacy are often combined into one. I have read quite a bit on how the male gender tends to express intimacy through physical actions (hugging, caressing, making love, etc), whereas females are more open to the verbal as well as the physical. I include Maslow's human needs as when we do not have these needs met, we are at risk of having a part of our self concept under-developed.

The Implications of having Endo on Sexual Relationships

The common place problem with women who have endometriosis is that the physical expression of love might be a source of pain. The physical pain of sex has implications for both partners. Several women in my support group have commented that the pain leads them to try to avoid sexual relations with their partners, and sometimes that their partners give up trying to initiate sex as they don't want to cause them pain. In my support group, I have met many women who fear the thought of making love, as they know afterwards that they can be in pain for days. It's hard to feel like a sexual being when you have to take a pain pill just to have sex or because you had sex. When the physical expression of two individuals love for one another is no longer possible, for some people it can feel like their partner is pulling away from them. When a man who expresses his love in a physical manner, is no longer able to express it, communication can breakdown between the couple and lead towards one or both individuals feeling "unloved".
For women with endo, it can be difficult for us to see that we are sexual beings. We can come to resent our reproductive organs for what they are putting us through. We might feel that we are "less of a woman" due to our disease, our inability to conceive and carry to term, surgeries that we may have had to remove ovaries or even having complete hysterectomies. Many of the medications that we try in order to alleviate our symptoms can not only lead towards a lowered libido but can also lead towards weight gain. Quite a few of the ladies in my support group have commented on how the weight gain has caused them to feel unattractive. Also, the physical pain itself can make us feel unattractive, and it is hard to "be in the mood" when you are in a lot of pain. A few women have also commented on how they fear that their partners may seek physical comfort in other places due to what they lack from us in a relationship. It's not a far stretch for sexual problems to lead towards communication problems and issues of insecurity in the relationship.

A Perspective on Dealing with Physical Intimacy

Sometimes we need to shift our perspective on exactly what physical intimacy is. Yes, we do tend to think automatically of sexual intercourse when we talk of intimacy, however that is only a small part. For partners who want to show their affection physically, gentle caresses even to the cheek can communicate feelings of love, as can being held close. Research on the power of touch have proven that humans require physical touch and that it may be a source of healing from a variety of illnesses, from cancer to chronic pain. Massage can communicate our deepest emotions which words can fail to describe.

On the Topic of Intercourse

To help with sexual intercourse, it is necessary to try to remain as relaxed as possible, and to think to yourself that this experience is going to be better than the last one. If we focus on how much it has hurt us in the past, it will tense up the muscles and make this experience an unpleasant one. It's always beneficial to start with a clean slate. You might also want to keep track of when you are in the most pain, both with positions and timing of the month. It's possible that certain positions won't hurt during a certain time, but might be more painful at other times. This is normal as the endo can cause internal swelling and the added pressure and movement can set off more pain. It might be helpful to invest in a good sexual manual to help with discovering new positions that might not be as painful as others.

The most important key to coping with this is communication. Let your partner know how you feel, find alternative ways of expressing your love, and keep experimenting with different ways of being with one another. Remember that this disease is only a part of you and does not define you, it does not make you less of a woman in any way, shape or form.

My two "Options" left

2009-07-10T14:17:00.008-04:00

My two "Options" left is what i end up writing about in the end.

.................................................................................................................

I am welling up with tears again,

In my head, we would move to Fergus and then everything would be fine. I would feel well enough to shop at all the local stores when I wanted, and then even better so I could get a part time job (and not be fired for missing days) and then even onto full time work. That was what the plan was in my head. I forgot to mention, also in the plans was making friends with the neighbours, and then later with people at work.

The truth of it is we have now lived here for 2weeks as of tomorrow and I have made it to the closest store (the grocery store) once and that is all. That trip required hours of waiting till I felt best, Demerol and ended up with my grinding teeth plenty from pain. While at the store I was reminded that I was unprepared, I had not taken anti-nausea pills ahead of time, nor did I have anything with me to settle my stomach, but thankfully being in a grocery store that wasn’t too hard to find, but did make me rush to get to the check out rather fast as to avoid vomiting in the aisles. Rushing made me forget one of the key reasons I was shopping in the first place, but I managed to make it back and not throw up so for me I guess that could be considered a success?

I am just getting so sick of this body.
My illness will never kill me, even though in many ways it works like a cancer.
Though it has killed my getting a secondary school education (but I did finish high school and it did mess that up many times but with an extra year in school I made it out, but that was before I got worse). It has destroyed my social life generally speaking. The inability to move much without pain has made me gain allot more weight, also did the experimenting with Lyrica to see if it would help with pain, this has destroyed all self confidence I might have had. Taken away sex drive, well that is not entirely true but that almost makes it worse since I am left wanting when my body is unwilling to comply.

Being home all the time, unable to work makes most people assume (including myself) that I would be able to at least be somewhat useful as a "house wife" (even though I am not a wife), doing dishes, laundry and general keeping the place in order. It’s not as though there are even kids (the hardest part) to look after while doing other things, and yet I am unable to do most things. Or I can do them without tears from pain, if I use Demerol but that might mean I don’t have it when I am throwing up from the pain sitting in one place.

I should be happy; I live in a great neighbourhood in a great house and have an amazing guy by my side. I don’t have to work, (ignoring I can’t) to support self at the moment. Though with all this going on I am depressed more and more.

Joy more tears, the real kicker is seeing as I have tried all medical means of treating my Endometriosis, including some experimental ones there are no options left except for 2 I am unwilling to try. Truthfully of those 2 only one is even an option since no doc I have come across is willing to tie my tubes let alone give me a hysterectomy.

Those options are danazol (believe that’s the name) and seeing as each and EVERY time I took drugs that effected hormones (adding any to the mix) I have gotten worse/more pain. Along with many other hellish symptoms including becoming suicidal! I would get allot of the more uncommon side effects even, so the thought of trying a drug known to have a list of possible hellish side effects (including facial hair growth, and a forever lowered voice off the top of my mind) I am simply unwilling. Since hell, even my endo doc agrees with me, looking at my past experiences I would likely end up hairy, sounding like a man and on top of that in even more pain. It’s not worth it!

The other option is a hysterectomy. Doctors are unwilling when you are young and even more so when childless and since I don’t plan on changing the childlessness and I can’t age over night its barley an issue in their eyes. But MORE importantly I think is my reasoning for not wanting a hysterectomy, and it’s funny since although you would think my reasoning would be important to people, those around me don’t seem to hear my thoughts at all!
The fact of the matter is, I know of allot of people who have had the hysterectomy either total (ovaries and uterus) or partial (just uterus) out and are still in plenty of pain. Hysterectomies are NOT always a CURE for this illness. So let’s say I have my insides removed, now is the fun of trying to balance my hormones, oh wait... did I mention any time I have had to take anything that put hormones into my body I ended up in a horrible state? (If you missed that read above paragraph again). Now this could sound mean, and I don’t mean it to, but my mom had a total hysterectomy and ended up being one of those who felt better (yay mom), on the other hand I lived with her for 18years past her hysterectomy and witnessed the time it took to get her hormones balanced, I witnessed those mood swings, saw the meds she had to take to combat some of the issues for no longer creating her own hormones and such. I am terrified of all of it. Since I frankly am not allot of fun to be around now, but my mood issues are pain related not hormone related, when my hormones are off at all I am a complete hellish person to be around, I know this! No one would want to ever be near me let alone live with me if they were off, and if you add the possibility that the pain might not go away when my inners are removed the taking hormone replacement therapies could make the pain even worse.

Yet another reason for my “unwillingness” to have a hysterectomy is I have some hope in the future that they (doctors, scientists) will come up with a way to treat endometriosis, and if they do there is a chance that the meds used to treat it will affect the uterus or ovaries in order to work, well if they are not there how does one get treated now (yes, this is only an issue if the hysterectomy does not help with pain)? I don’t want to put myself in such a situation that ends up making it impossible to use medical advances that could actually treat me.
And yet another reason, that although is insignificant compared to the others is simply, I liked the year I had while my body worked, now endo has claimed my bladder so I already feel very old and decrepit, I often don’t feel very feminine as it stands with how my body acts, and how it has acted in the past. I am almost at the point to admitting another issue I had in the past, that still effects me now and again, (I wrote it out and I can’t) Most people who mean much to me have either been told by me, or told by Scott about this issue, and as it stands others in my life don’t need to know but if you want to you can ask and I might explain it on a one on one way, or later may be willing to admit this issue fully.
But it effects me in a way that also makes me feel less feminine at times and well, removing the parts that make one “female” is allot to wrap the brain around when you already have issues with your femininity in your head (another issue that would be horribly messed up by replacement/unbalanced hormones!).

So basicaly i end up getting sad since i am in constant pain and am really out of options other then pain managment at the moment. The kicker there is my current pain managment doctor has given up!

no adventure today

2009-07-08T13:27:00.002-04:00

So this compleatly connects to my last post.
i doubt i will get to explore today, i was awake untill 9am, slept untill 11am and have been up since. Scott gets home at 4pm i beleive today, meaning very little time to explore.

Add to the fact that i HURT... i am not moving.
I was avoiding pain pills, but it looks GREAT outside, and theres so much i want to do.
So i took a pill and will see if it helps.

Besides my pain preventing me from acomplishing anything usefull, the weather outside is begging me to explore and the worst part.... *drumb roll*
i still havent really met the neighbours, and i need to.... on the one side i can see the young girl is outside, so likely the mom, or dad is around and so it would be a great time to be out and about and try to meet them. But now even if i do start feeling good enough on meds to go out, i dont wana meet them while on demerol since i wont rember anything usefull they might tell me, and am far more likely to say something dumb.

i am frustrated, on the positive is i got the dishwasher running... and i can barly hear it. oh i heart my stainless steal dishwasher.

okay... 3 or so hours later, that internet is finaly back. i can now post this.

new home, hope to explore

2009-07-08T00:15:00.002-04:00

We moved to Fergus Ontario now over a week ago.

The weather the first week here made me think i had moved to england, however the weather has aparently been the same in guelph also. Rain off and on every day, changes within the hour.
So first week i couldnt get out to explore the days i did feel better (though they were limited)

This week so far i have been feeling extreamly rough.
I have high hopes for tomorrow however, even if it means max demerol i am going to try to get out into my new town and explore.

The pain doctor has officialy given up as of a week and a half ago, but in our parting he told me to go back to using demerol to control daily pain (it doesnt, it gives me times when i am in less pain, but i save those times generaly for worst parts of day.. meaning in pain all times and even bad pain alot) but also gave me samples and a perscription (for if i found it effective at all) to try Ralivia, a slow releice pain killer that is to be taken daily. I am finding it helps, though leaving me still in pain, it does help. Though today i was very much reminded how much it helps when i woke up in pain to the point i couldnt move, not even to shut the bedroom window that was the cause of my freezing in bed. Shortly after i draged myself downstairs, and took demerol to be able to cope at all, i reolized ihad forgotten to take my daily Ralivia pill the night before so this extra pain was lack of Ralive being in my system.

Tomorrow though, as i said i hope to get out for a walk or a bike ride. Will try to find camera before i go so i can document my adventure. This is all of course only if i can sleep anytime soon, and with being on max demerol, that could take some time.

heres hopeing for tomorrow.

So much to do, and cant move.

2009-06-17T11:45:00.000-04:00

Well, first I woke up this morning in pain, quite a bit but didn’t want bring down Scott as he was headed off to work. Or make him worry since I have allot I need to do today.

Set an alarm and went back to sleep for a bit, I was feeling exhausted with no reason at all to be!

I woke up off and on but still too much pain to move much, and so warm in the house even with the fan I re-set the alarm. Still I kept waking up in a panic off and on and oh my word the "nightmares" FUCK, sickness.

Finally I realise I can no longer stay in bed any longer, even with the pain and the exhaustion. I have too much to do today! So I took one of my prescribed pills (not the ones I am avoiding) that is for the fact I was diagnosed years ago with something that explains my exhaustion apparently, for almost the last year, except while in school I haven’t taken these meds since they make me allot more alert, and when you’re in pain... more alert equals more pain. With school however I needed to take the meds since they made focusing and doing homework allot more possible and not needing over 12hours sleep a night.

So I hurt, but figured if the meds to make me alert made that worse, I might end up taking pain meds, and would at least get things done. Took the pills and laid down to wait for them to kick in.

....

Now i am not moving or even unclenching jaw since i am gagging.
Pleasant I know, but I am afraid to move to even get my puke bucket.
The pain is still full force, and now I feel like CRAP on top of it all.

I took these meds that make me alert, a few days ago and did not have problems so I don’t know if it is the medication, or the pain.

Things to do today:
Call layer
Make all windows easy to get to (house buyer coming in to measure them with a window guy)
Do dishes (got most done)
Tidy house, ALLOT
Shower
Finish packing closet (other than hanging clothing)

Should:
Tidy outside/garden before buyers gets here at 5:30
Talk to buyers when they get here about the wall patches
Get back in touch with the person who said they are buying bed
Get back in touch with lady coming for freecycle shit

very frustrated

2009-06-09T19:42:00.001-04:00

comming soon.

just getting this post up, will edit it up WAY better later

2009-05-31T13:29:00.000-04:00

I already so anti-Endo I don’t want keep this updated.

My one appointment went okay, we just went over the fact I am still the same. Got an appointment/referral to an urologist finally, only been having issues since April 2008... My appointment will be august 31'st.

was supposed to see another doc, on Tuesday but he was sick to look at my blood work/hormone levels that are being created by taking the Indian drug I am trying, and to possibly ask for a referral to a new pain doc. (will explain more when not feeling so bitter/crappy)

so anyways on Thursday I tried to stop in to see him, before seeing Endo specialist so that I could show him the results also. But the other doc was still sick.

This was all Thursday, I was feeling really rough but still able to move just delayed timing.

I knew if I finished that day without my period I would reach a 33day cycle. And I did.on Friday morning I had an appointment at a alt-massage guys place to have an ionic cleans (foot thing, it’s weird. will also explain later....)

I started feeling too much pain while there but I thought it was perhaps just how I was sitting adding to pain.

It wasn’t.

I had actually eaten breakfast, so no issues with taking the anti-inflammatory my pain doc had prescribed the moment I got to my parents, but the pain just kept mounting. soon I realized my period had started (this is Friday) and pain is so bad I can barley move, and am to nauseated due to pain to eat.

After the day of pain, by 6pm I decided I couldn’t take the pain anymore, and my mom was home so asking to go to the hospital was an option without meaning scot had to stop working. So off we went.
Later he met me and my mom there and eventually I got in. and life improved once in a bed to start with rather than the wheel chair (could barely walk).

I was given a shot of dilaudid in my belly, only took a little pain away but left me nauseated extreme. Then a shot of graval that slowly helped with nausea, and then another shot of dilaudid.

By the time we got out of there it was 3:10am. Made me wish I could have been able to give Scott’s sister an answer when she called and ended up asking us "well when you are leaving (the ER)" well... were in the waiting room, it’s not yet 10pm, I WISH we knew, and I WISH it was soon. But come-on.... it’s the ER and since I am not visually gushing blood, or a child I am taken last.

The ER doctor gave me a prescription for pain meds, which are not Demerol so does not interfere with my getting off Demerol. (yay) and perhaps this will make it clear to my pain doc, that my period is my WORST time, and yes he has been given me to help me with my chronic pain, however as bad as it is, being all the time, my worst pain is on my period. Yet his advice for me was take a Midol. Hopefully can get something from the hospital, or can explain clearly to him what happened so he can start to be realistic for that, if not I will be hunting for another referral to another pain doc I have been told about, that has treated persons with my condition!

hello, what is endometriosis, and awaiting my "bad days" with no medication to help.

2009-05-27T09:52:00.000-04:00

I am Canadian, been all my life.
Born and raised in ontario.

My life was rather pain free untill the age of 14.
Then the pain began just as my period did.
Almost 4 years later i would learn that my pain, short cycles, and (eww) heavy bleeding were all because of a disease known as Endometriosis.

What is Endometriosis, well that i hope to answer many times, and many ways in this blog.
But i will start with cutting from "the endometriosis association".

Endometriosis is a painful, chronic disease that affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.

This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.

i am starting this blog, since i want to have one, that is about my pain (chronic) that people who either suffer from chronic pain can relate to me, or those who know me can learn to understand things more posibly.

Today i sit here in pain (sitting alone is causing me more pain then laying down was), however i am now in the same room as Scott so we can chit-chat.
I am not to take my perscribed pain meds, my "copeing meds" that were perscribed to me are less effective then i find advil liquid jells to be (and for my daily pain, useless, ... my bad days.. WOW. i think M&M's could work better since at least they are fun coloured so they make me smile. And the chocolate creats happy endorphins!) So the meds i have to make my daily pain "manageble" is of no use to me, I AM takeing it though.... and nooo demerol.. the pain is not sickening today but often is the last few days (now i have to take anti-nausia meds just to not throw up from the pain at times, on my normal days)

My worrie lies with the fact i know i will have some "bad days" comming up. These bad days generaly require the use of heat pads, max demerol, and anti-nausia meds to not be begging to go to emerge to get a shot or iv pain meds. Well this time, although i still have demerol pills i want to show the doctor i am respecting his choice to get me off demerol, (and i do, i do not however respect his not wanting to give me ANYTHING to help with the pain, not even for the bad days comming this week)

So now i sit and worry, perhaps i will be fine as long as i dont move... at all. And take loads of my perscription anti-nausia meds & Gravol so i can sleep through most pain. But if my bad days are anything like they have been the last 5years without pain meds, i think i will be asking Scott to take me to the ER, yet again.

but who knows.