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I have just finished reading the book, How to Be Sick by Toni Bernhard; the one that I mentioned in my previous blog. I am by no means a literary critic, but I just wanted to say that I was not disappointed by the book. It does have a lot of Buddhist teachings, but it also has a lot of GREAT advice for people who are chronically ill. It teaches you how to see your situation differently when all you can see is your pain/ fatigue/ failures. It also teaches you how to communicate better with the people around you. Not everyone wants to hear about my illness. For the purpose of this blog, which is to talk about my illness and let others know that they are not alone in their suffering, “sick talk” will continue. I will, however, be more careful about sharing with others. Maybe that’s where my family and friends (the few I had) have gone. They could be afraid that if they tell me about all the fun they’re having in their lives I’ll be sad or maybe they just get tired of hearing about me. I don’t remember being that self-centered, but maybe I was. I do know that I will be more careful about what I say in the future and to whom I say it.
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M- and I have worked out our issues. Turned out that all the remarks about being a “pillhead” and “being in my own little bubble” were because he thought that I didn’t need to take the medications I take. He thought that if they didn’t completely get rid of the pain then I had to be taking them to get high. We had a VERY serious discussion and turns out that all he needed was an attitude adjustment and to read the very same information that I re-posted from edsinfo at edsinfo.wordpress.com about false perceptions about opiates. Honestly, I was hurt to the very core that my best friend and partner in this world doubted me and my illness, especially after being so supportive for all these years. I understand that as a caretaker it has to be terrible for him to see me everyday and know that there is nothing that he can do to help me get better. But to then take those frustrations out on me and to doubt me… I say that we have worked out our issues, but only time will tell and honestly, for things to be completely fixed, he will have to prove himself to me again.
I will definitely be having surgery on August 28. I don’t know if the hernia will be repaired or not. The surgeon didn’t seem to want to risk operating (like I haven’t heard that one before) and he said that he would let me know after he looks at the CT. I didn’t hear anything from him yesterday or today so it looks like I have been blown off by another doctor. Oh well, if he shows up on the 28th that will be great. If not and that hernia gets blocked and I have to have emergency surgery later – let’s just say I won’t be too happy and this time I will call a lawyer. Either way, my pelvic pain specialist (the one doctor that has been there with me with understanding and support through all of this) will be doing surgery to see if there is anything that can be done about the adhesions. I am praying that he will be willing to cut some of them, if not all of them. I know that he is tentative about this surgery in the first place and that it could turn out to be pretty messy, but I am hoping for some relief! I am aware of the risks, but to me the risks are worth having a life again! If only 50% of the pain were to improve I believe it would be worth it (although I am hoping for 100% and realize that I am probably looking at 0% if the doctor decides it’s too dangerous to do the lysis – cutting). I would love nothing more than to be off of the medication, and out of the bed. Hey, even out of the bed would be good enough. It gets lonely and boring in bed all day. But, some things I learned from the book I just read: 1) if the surgery is meant to help with my pain, it will help. If it is not meant to help with my pain, it won’t. Que será- será. 2) being at home isn’t all bad, and there is a difference between loneliness and solitude. I can now appreciate getting to spend time with my “babies” (the dogs) and having time to read a good book or two. 🙂
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