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OK - lately I've been through my own personal sel-inflicted hell - which is what I truly believe, that as far as the mental stuff goes, I have it down to a fine art. HOWEVER, I am here to gloat - however fleeting that it may end up being. For the moment, my head has cleared and I've seen the light - for whatever God or spirit that you hold dear. You know that moment of clarity when you just get it? Now, before I have to go out and buy a bigger hat, I'm pretty sure that my Gandhi days are numbered to possibly hours. This same thing happened to me last week - then I took a nose dive. It just really gives me hope that it's all getting better.
Hanging in there - upside down and sideways.
Denise
PS - I found a great book - new therapist - You can heal your life by Louise L Hay. HOWEVER, some may find it offensive as it's a bit new age (sorry if that term is no longer - kind of a few years over fifty)
I think you should enjoy it!
I think you should enjoy it!
Hey Denise, I don't think
Hey Denise,
I don't think you are being sanctimonious at all! You have worked your tushie off in treatment and to celebrate a window of well-deserved clarity is more than your right! It always brings a smile to my face to see a post of a success.... almost like I can get there too, if others can. Are you enjoying longer periods of mental stability as treatment goes on? It sounds like it;) How is your bladder doing? I am in a bit of a regression or dip or something that I am frustrated with. So, I am trying to stay sane while I have gone back to the questioning/searching/constant discomfort mode. I am almost one year in and although I am undeniably better than I was a year ago, I thought I would not be seesawing as much at this point. Does that make sense? ARGH!
See how I made that whole post about me when I meant to celebrate you?...lol. Sorry about that;)
Katie
Hey Katie
I was hoping that you were all well - HOWEVER, I do know that you are a ton better than when you first started - so, keep on trucking. As for me, my bladder is fairly consistently stable - it's my head and nerves - that still are a tremendous struggle. The long stretch of clarity, that an herbal change caused, lasted six months and then my brain went haywire - and the struggle is on. However, I think a lot of what is going to make me well - is some deep healing, soul searching, and kicking and screaming to cross the line of life - where I am certain I'll find all the matching sox that I've lost over the years. :)
oh louise!
Denise, I'm so glad to hear you're doing well and feeling good- it's great when everything just clicks and you can see clearly! Louise Hay is an interesting one. I was introduced to her when I first realized I had IC at age 16 by my homeopath at the time. Louise is pretty no-nonsense in a little new-agey way! I think her message is a worth paying attention to, though. There seems to be truth to it even if it does seem a little far-out.
Katie , I'm sorry to hear you've hit a bump in the road. You've been doing so well, hang in there and you'll get through this, too! I know how demoralizing it is to feel like you've taken a step back, but remember that it's a process that always seems to go two steps forward, one step back in my experience. I had a bad spell a couple of weeks ago and felt really down about it, but then realized that what I was feeling as a bad spell was really my old normal, which cheered me up a bit. I hope things start to improve for you soon and that you can get some rest in the mean time.
Denise,
I am so happy to hear of your progress! I am rejoicing with you! I believe it will keep getting better and better. :) Hugs to you!!!
Katie, I just went through a major bump in the road. I feared I would never be stable again, but here I am sitting in the library in my right mind and not having to go to the bathroom. :) I am still in awe of not being in pain 24/7. You will get on the other side of this, dear. I believe it! And I can't wait to hear how your return to teaching goes. :)
Mrs A, firstly, SO happy to
Mrs A, firstly, SO happy to see you're doing better again. Wonderful wonderful news.
Katie I saw your post this morning but didn't have time to answer; I've been thinking about you all day. We've been in treatment about the same time I think and had parallel-ish progress (give or take) so I wanted to say, having been steadily improving I hit a bump over the last month or so. Nothing too terrible in the grand scheme of things - frequency and urgency held pretty steady, but I had a LOT more muscle burning/vulvodynia and diarrhoea. And of course it touches off the anxiety again!! Dr B was wonderful throughout, super calm, and said she promised me it would level out again and I'd get well, she just couldn't give me the timetable. That definitely helped. We've fiddled doses and over the last week I've had more good days again (4 out of last 7) (which is actually pretty awesome). I've noticed that for me now it's very strongly linked to gut - when I have diarrhoea the burning kicks off. It has helped me to see that pattern, particularly as it makes sense in terms of the imbalance stemming from the gut. I also have been reminding myself of the fact that this time last year when I was having bad diarrhoea I literally couldn't move afterwards - would have to lie down and be in burning agony, as if I'd doused myself in acid. Now I'm fine after, just the burning builds up over the next hour or so (and generally hangs around all day!!).
Anyway. All of that is a long-winded way of saying - these are blips, not regressions. It's hard to feel as if you're having tougher days after good ones, and I'm absolutely convinced that the my subjective experience of them is worse as a result (that is, I view them as far worse now, when they are fewer in number; my tolerance for the symptoms has diminished). Just take each day at a time, and remember you're capable of feeling as good as you feel on your best days. You're just working at getting more 'best' days!
Love to everyone, hope you're all doing well today xx
Angels!
You lovely group of women literally made me cry with happiness this morning when I woke up read your inspiring and thoughtful posts of encouragement. I had really moved away from the --- each morning when I wake I fear the pain/exhaustion of the day--- and that it has inched back in a little these past two weeks, it made all of the difference in hearing your voices instead of my questioning own voice. Thank you;)
Denise- I sincerely hope the clarity and mental stability continues. I certainly feel like an insane woman on some days -- I attribute that mostly to the insanity of this disease. Anyway, please keep posting and letting us know how you are doing. AND when you find those matching pair of socks at the finish line, I am pretty sure I have some there too. I will come meet you and get them myself;)
Claire- Part of the reason for my downturn this week was that I caught a cold. Not anything more than a stupid, old fashioned, cold. But of course, my unique spin on getting sick is that my heart rate goes sky high- up to 150 bpm this time..yikes! Anyway, I kept thinking of you and your strep throat! That is a pretty nasty virus and you did a great job at handling it;) Has your bladder returned to manageable after the virus? My heart issue still makes me on edge but the bladder pain bothers me the most. It subsided a little yesterday and if I am honest with myself, there is always more I can be doing to heal. It's just tough with little ones. You had mentioned at one point you were thinking about trying to work/volunteer a little. Are you still thinking about it?
Mrs.A- I want you to know I read the posts you made for the list two thread and I am going to make the rice pilaf tonight. I am so thrilled to hear you are out of your tough flare. I was praying for you! Any idea what caused it? Was it the muscle cream you mentioned? I think you would be the perfect woman to highlight if we ever make an ICAMA cookbook;)
Sarah-I track your posts because I, too, think that our paths have been very similar. I have had some real periods of relief during treatment- weeks at a time with minimal discomfort and regular 2-3 hours in between voids at a time- so when these rough patches happen, I really notice them. Like you mentioned-- I have become intolerant of them. I just need to get better at managing my mind when I have the "two steps back" time... that's when I begin to question treatment and my response to it, which is helpful to no one. Dr. B has been wonderful though... very supportive and lately, more informative in her decisions - I appreciate that. I think when she is able to explain more of what is going on with me, then I am able to relax a little more. I think part of my perspective shift also resides in my decision to return to teaching this fall. Now I compare my days to "can I teach through this?" rather than "am I functioning at all?"- that in itself, is a real gift;) Have you been in treatment a year now?
Thank you again,
Katie
Thank you for
praying for me, Katie. I am so thankful for all the support and help I received during the last three weeks. I am still not "right" yet, but so much better. Yes, Dr. B says it was the muscle linament that I made to put on my left shoulder ( for only four days), which sent me spiraling into a very long and painful flare coupled with a bad sore throat and canker sores. My shoulder still causes me pain, which she told me is IC related. I will never make my own linament again though! I can relate with questioning treatment during a difficult time. I was so afraid I had damaged myself so badly that I was irrepairable. Dr. B was very reassuring that I had taken a bit of a detour but would be back on track. :) I am so thankful for her guidance and reassurance!
I hope I remembered the rice pilaf recipe correctly, and that it turns out delicious for you!
Hi Katie! I've been thinking
Hi Katie! I've been thinking of you often and hoping you're feeling better! The heart thing must be so unnerving and of course the bladder part is a special torture all its own... I hope you're feeling mostly excited about getting back to teaching. I think you'll be happy about your decision. I remember even when I was quite sick, feeling glad that I was at work and noticing that I was less aware of my pain while teaching since I had to focus on a thousand other things. Isn't it an interesting realization that we're always shifting our baseline of comparisons (e.g. you said now you're wondering "can I teach through this" vs. "can I function")? It's great to be able to look back and notice the shift. I'm having an off day today (of my own making) and am uncomfortable but really doing OK. And before an off day was agony, so it is really getting better.
I'm working part time now as a gluten-free baker. It's really fun and very low stress. I also run a kids art class once a week and work in my studio on various art projects and stuff that I sell at a store near where I live. It's not a living, but it's something!
As to my strep, it's interesting because now when my bladder gets "off", I'll often feel it in my throat too. Matia says this is normal transference of symptoms because it really all has to do with the small intestine and lots of people feel it in their throats, or at the other end of their digestive tracts (to be polite about it). Honestly, during the strep debacle, my bladder was almost perfect, like, asymptomatic! It was like it all moved to my throat.
Anyway, best wishes and keep us posted on how you're doing!
When I saw the title of the
When I saw the title of the thread, I knew it was you. Good on you. You CAN do it. 'Want' is my latest saviour. It's making me stronger just to remember to 'feel' the want for certain things out of my life - I'm determined. Much love.