I live in chronic pain. The reason for my pain, is Endometriosis. I was diagnosed through surgery when I was 17. I have decided to have this blog, so that those in my life can get a peek into my day to day issues that affect my life in every way.
Friday, July 31, 2009
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.
Monday, July 20, 2009
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:
~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)
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.
Sunday, July 19, 2009
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.
Friday, July 10, 2009
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!
Wednesday, July 8, 2009
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.
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.