The last few days have been rough. I have just been in so much pain (and/or so drugged) that I'm starting to lose it. My brain just feels frazzled all the time and all my nerves and muscles and joints are just screaming.
That's the downside. On the bright side, I can't say thank you enough to all of you for your love and support and care over the past few days, especially! I've had visitors, facebook messages, emails, calls, letters, texts... thank you SO much! Even if I haven't yet responded, please know that this means the world to me and has been an INCREDIBLE source of encouragement through some mighty tough hours.
I just don't even know how to describe how much pain I'm in. I just hurt so bad. And it's so exhausting. I wake up in a lot of pain, since my meds have worn off in the night, then after the meds kick in, I still hurt... then my heart starts pounding and I start shaking and I just curl up in a little ball, hug my teddy bear, and wrap up in a soft blanket. Heating pads, anti-inflammatory creams, hot showers, and ice packs are added as desired.
So... this is terrible, but... I forgot that I had an appointment with Dr. Pain early this afternoon. For some reason, I had this idea that it was at 3:30... no idea how that got into my head, but there it was. So around 1:45, I looked down at my desk and realized that I was supposed to have been at the Pain Dr 45 minutes ago. I called them and apologized profusely... and Dr. Pain agreed to go ahead and see me as soon as I could get there, because he's awesome like that. I felt terrrrrrrrible. I am NOT like that. I am just hurting so much and feeling so sick that I can't even keep track of the ONE appointment I had all day.
Anyways, Dr. Pain wants me to try another long-term med - an antidepressant that changes how your body perceives pain. I'm already on an anti-epilepsy med that is supposed to do something similar (although it hasn't done a thing for my pain, sadly). It's worth a shot, so I'm going for it. He discussed that the amount of steroids I went on for the joints was a pretty weak sauce burst, and I'm inclined to agree - that amount of steroids never phased my UC in the slightest. However, with me having a possible infection, doing a large burst of steroids is not a good idea right now. The new med is supposed to kick in after a couple of weeks. Until then... he gave me new and extremely powerful (even for me) pain meds, because I simply cannot continue to live in this much pain. He was fairly impressed that my pain was barely phased by all the meds I was given in the ER and after my surgery.
I told him that all of this freaks me out; that I'm scared about all the meds I'm taking, that I'm scared I'll be on them forever, that I'm always going to be in this much pain and nothing will help... and he hugged me. We talked about how this much pain is a really big stress on my entire already-delicate body (and for me, especially my adrenal glands), how we have to break the cycle of this pain, how I've had very very bad times with pain in the past, and I've eventually gotten through it, with the help of extra meds, and then gone back to my "baseline" meds and pain level. I hope all this is true.
Again, I want to thank all of you for your outpouring of love and support. It's been a tough couple of weeks. The fact is that I, along with 1.4 million other Americans, suffer from a vicious and debilitating disease known as Inflammatory Bowel Disease. Please see this recent post to see what you can to do help... I am seeking support and help as I raise money for the CCFA's Take Steps Walk in May! The CCFA (Crohn's and Colitis Foundation of America) raises funds for research and patient support for those suffering from IBD. Check out my team's page, and check out my personal page to sign up to walk with me or donate! Please help those suffering like me - consider forgoing your Starbucks drink and instead put that money toward a worthy cause!