My 30

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 serenity to 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

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

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

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

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.