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!
Wednesday, October 7, 2009
Saturday, September 26, 2009
The delicate balance within the body, and how medication effects it (part 1)
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.
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.
Thursday, September 24, 2009
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,)
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.
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.
Thursday, September 17, 2009
not coping well today + i know my own body
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.
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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
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
Monday, September 14, 2009
Today is the first day of invisible illness awareness week September 14-20 2009
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.
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