Sunday, September 10, 2006


I DREAD being asked this question. First of all, I know three-fourths of those asking me really don't give a flying F*, and if they don't know me and I'm having a miserable day I'll usually just provide the obgligatory "fine"... because that is what they expect to hear and will hear in their rush even if you say something to them like "terminal."

On the rare days when I'm having low levels of pain and feel like I'm part of the human race and notice that "Yes" there is such a thing as sunshine, flowers, and children's laughter, I will beam at them and say "I'm feeling great and having such a wonderful day. I hope your day goes just as well." And, the thing is, I TRULY wish them this. They often look at me as if I were nuts....

Some days when I have just pushed and pushed and am just SOOO tired of my pain and at smiling at everyone and making like I'm having an OK day in the old American Rat Race and that sweet, young, obviously care-free check-out gal says to me brightly "How are you today?" I just wanna stand there and tell her the bloody truth of my life, but then again there are usually people standing in line behind me and there is usually no time, so I just say "Fine."

Anyone out there want to ask me how I feel today? Hell, I'll tell you about my whole weekend...

Let me pause here. I had planned previously to write this Pain Journal in some kind of orderly fashion, starting with the past. I find my mind will not allow me the patience to do it that way and I find it more cathargic to write as I FEEL it. I may have to stop once in a while to explain a bit (such as now) so I apologize in advance.
Because doctors have not yet found what is causing my pain and my pain is not properly managed, I want to share my "date" with my husband just to let you know how little it takes to set me back.
I can't sit on my ass all the time, so I often push my limits to have some life. After a #5ish day of pacing myself on friday I managed to get out a few hours Friday night and pushed through a few hours until I passed my limit which led to a #9-10 and tears of pain/frustration by the end of the day. All I did was want to spend a special evening with my hubby. If I can do things to get my mind off pain, it helps at #5 levels, however, just the activity in itself will also increase the pain.
We laughed and talked with people, which I loved, because my pain has divided me from the human race. We used to visit an awesome book store called Books & Co often in the past, so we went there and browsed. Even before we went there, my pain was beginning to flare, so while my husband continued to do something we both so used to love to do together, I moved on to a specialty food store called Trader Joe's, and bought some little goodies. I could wait no longer to go home and had to hurry my husband along. He didn't get to visit Trader Joe's like we had planned. He didn't act upset, but to me it was just another instance where my pain interfered with his pastime. I knew I had to just lay down and give in to what was quickly heading to the #10 pain level. We got home and I quickly got ready for bed. I was going to just do my typical, take my nightly meds, curl-up-in-a-ball, lay very stil, and hope the pain levels lower enough so I can get enough rest before the next day's cycle starts.
Now, my hubby, who loves me very much (been married 37 years this month) feels helpless. He asks what he can do for my pain. Hell, I don't know what I can do for my pain. I have spent about 3 years trying to find answers. This 3 year search is why I began this blog because there has been much that has happend that I feel shouldnt have that has put me where I am today. But I veer from my original topic as I was afraid I would be doing if I didn't do this blog in order. But what he can and does for me is rub my feet and lower legs. As I have such high levels of pain in my right shoulder and back, it hurts to rub me where I have pain, so he will rub my feet just to give my brain some pleasure sensation in place of the pain sensation it has. This is what he did for me Friday night when we got home instead of my usual retreat to bed. Bless his heart.
I awake Saturday around 8:30, with pain levels which have lowered to 6-7. So, I take my morning dose of meds and hope for the best, which means me laying around all day doing nothing just to keep pain levels stable for the day.
Then my daughter calls and wants to bring my grandson over for a visit. You think I'm going to turn that down???? They come over and we have a nice afternoon visiting with our daughter and grandson. I hide my pain from her... They leave and I take a nap hoping to relieve my pain which is now heading towards the #10 zone again and has me close to tears. I collapse just because I'm dead on my feet from pushing 2 days in a row (I know it doesn't sound like pushing...). Rest for two hours, but it doesn't really help the pain. Hubby once again tries rubbing my feet and legs, which doesn't seem to be enough this evening. I even let him try to rub my back where most areas hurt to rub, but some little areas it feels good and I let him try.
I can't hardly sleep Saturday night... too much pain. Go to bed around 10:30-11. Awake around 2. Thrash for a while. I want to point out that with so much pain on right shoulder mostly, I havent been able to sleep on my right side for over 2 years. I will, at times, prop myself up so that my weight is mostly on my right hip and rest a while that way, but the pain sets in after about 15 mins and I go back to my left side. Around 4:30 am I finally went upstairs to my husband's bedroom and crawl into bed with him. YES, because of my pain and nightly thrashing, we have to sleep in separate beds in order to get ANY sleep. He said I snored a little so that means I must have slept for a little. He woke up and went bike riding this morning with our daughter. Things I can't do of course.
I took my morning meds, slept a little and awoke around 9:30 am. My pain levels this morning are starting out at 7-8, which is a VERY bad sign. My pain levels never go down throughout the day, only UP. Where am I going to be tonight? So, if I do talk to anyone today, I think I might really tell them I feel like shit.... if they should ask.
P.S. Writing this long post was painful. My right arm and side actually aches from the motion of typing. But, you know what? I forgot about the pain some of the time while writing it. Those few minutes of forgetfullness were worth the motion.


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