I’m working my way up the scale on the Gabapentin and trying to deal with the side effects. Although my memory is getting better and I’m not as loopy, the GI effects (adverse effects is a better phrase than “side effects”) are now the primary problem (although I would like my memory to get more back to normal) and I cannot find out whether or not they will get better as my body gets used to this dose of drug.
When you search for things like that, you primarily get one of two things – 1) 7 million tihngs that might be side effects. It’s almost as if if you get a hangnail and you take a drug, that becomes one of the side effects (although that’s extreme, it’s amazing what people attribute to their medications – everything but success often – oh well, I digress). and 2) Scare tactics about how bad the drug is and what it can do to you. There’s got to be a balance for crying out loud. Right now I can’t even fathom going off this and back to the near constant pain.
Oh well, I’ll have to live in the potty or see if my good ole friend Mr. Bismal (first name Pepto) will help with that.
I tried not to make this very graphic but when I’m writing to help others (as well as myself) I need to be up front (I think that’s almost as bad a phrase as “side” effects – after all, mine are “bottom” and “top (brain)” effects!
Have a great day
This past weekend I tried to get back into normal activities while still paying attention to my body. I knew that some of what I was going to do was probably going to cause pain (because it had before). But, I know I have to start somewhere.
So, Saturday I walked (not ready to even start running yet – especially after Memorial Day weekend’s experience) 4.5 to 5 miles. Then I went grocery shopping and most importantly I got my car washed (I love my car and have realized it even more since I got it back from the shop). Then I piddled around the house and straightened things up a bit – not as much as I should have but I did more in that one day than I have since the beginning of Feb.
Sunday, I walked 4.5 miles and had some episodes of “cattle branding” but stopped until they were gone and then continued on, determined not to let this thing keep me from doing what I love. Then I went to Walmart. That was a problem since I wore my shirt without any protection (lifting it up off the skin). That was a mistake although I have worn that shirt before without protection and without so much problem. Yesterday it was horribly painful all throughout the trip. However, always trying to look at the bright side – having that much pain kept me from buying more…ha ha. How cool is that. I was also able to bite my tongue (not literally) and get through the pain.
I also cooked for the first time in a while. And I got my treadmill out (my neighbor did) and walked on it while I was cooking. It felt great.
It was a wonderful weekend trying to get back to some semblance of normal.
I know that the nerve has not healed yet (because it keeps firing). However, there are days that are “good” and I feel great hope and happiness. These are days like early Friday when it was the first time I actually didn’t dread my morning shower – the running water did not cause the usual excruciating pain and then putting on my clothes did not burn for as long. So there was hope. I was thinking that I was getting to the right dose of Gabapentin.
I went to work happy as a lamb. But after about 2 hours, the pain came back but then it died down again. However, about noon, it was firing continuously. I was not only in pain but PO’d too. I get angry at myself when I have these electrical shocks (cattle branding). Anyway, I had to resort to taking a Tramadol and that bothers me too. The last thing I want is to become addicted to pain medications.
Some days I only have the allodynia (the electrical shocks and burning) when something rubs the area or even light wind against it) and those days are sort of tolerable because I have messed with my clothing so that I can limit the rubbing. In fact, when I go out for a walk in my neighborhood, I think people who see me in my t-shirt must think I’m a derelict but nothing is on my back so that’s great.
But then there’s other days where I have both the allodynia and the spontaneous pain. It’s the spontaneous pain that really gets me discouraged. It comes randomly and then it continues to fire, fire, fire. I actually moan and groan and curse at work when I’m alone in my office. When my office mate is there, I have to control myself. At home I actually yell out when it gets bad.
I try not to lose hope. I am trying to act more normally and do things other than going to work. For the first 4 months all I could do was go to work and make it through the day then come home and crash. Now I’m starting to write again and trying to do other things.
A good friend at work told me something about the narcotics. She said she was told when she was pending back surgery that “you do what you need to in order to make it through the day”. I am trying to believe in that and know that I won’t allow myself to get addicted. I try to do everything I can to not take the medications but sometimes I just have to give in and take them.
Back to the ferris wheel of postherpetic neuralgia….’
My presence on Facebook is intermittent lately. I am really just going to look for posts by Jan Walker who’s doing what I have wanted to do since the early 90s (1990s not 1890s – ha ha) – running across the United States. She is brave and determined and since I want to follow in her footsteps I check FB for her posts every day.
An old picture of him but showing his support for pancreatic cancer research
Yesterday I just happened upon this post from a great guy I “know” through Facebook – BJ- he was inquiring about doing Vol State and the race director – Laz – told him he might be able to squeeze him in. BJ said he just needed to figure out how to get the entry fee.
I wrote them both and offered my entry fee for him. Bottom line – Laz did his magic (since the race is full) and he’s going to let BJ in. BJ seemed really happy and I’m glad I could help. He has done the run across the US twice and is a great supporter and fund raiser for pancreatic cancer research. He does so much for others that I am glad I can do something for him.
So, some good has come from this. Had I been selfish and gone and tried to do the race I would not have made it and now someone else whom I know can finish will have the opportunity. Small things but I am reaching for anything to be grateful for and happy about. Good luck BJ and thanks to Laz for making it happen.
I was amazed…and thankful…and filled with gratitude for my TENS unit. I made it through the morning conference with my back support (it’s the best way I can describe it) with a few twinges that made me think I might have to reach for the Tramadol. But fortunately, between the TENS and the back thingie, I was able to make it without meds. I got to the airport very early and checked in, ate, and tried to nap while waiting for the plane. This was a bit tough but not too bad. Once on the plane I used my TENS, back thing and slept most of the way even though I was uncomfortable with all that, I was not in pain. I was amazed and very happy. Then I only had to get thru the flight from Dallas to San Antonio. That went off well too. I made it home and after I had been sitting for awhile, the twinges began. I went to bed and had to take the Tramadol but that didn’t surprise me. I’m glad I’m home for sure! And very glad it was not bad!!!! Maybe there is some hope.
Getting here to D.C. was trying enough on Tuesday. I did pretty well with my back “pressure” device (one of the few ways I can relieve that burning pain when it comes) but I also had to take too many (in my estimation) pain pills to get through it.
I have to go through the same ordeal tonight when I return home. This time I will use my TENS and hope that I can make it through TSA security without much problem. I will also take the pain meds before I get on the plane and have my device. But when the “cattle brand” comes, it comes with a vengeance and there is NO stopping it.
I only got a few hours of sleep last night so maybe that will help me sleep on the way back.
I just want to get home so I can take my shirt off and sleep in my own bed…and relax this coming weekend.
Much to my chagrin and with great sadness, I have had to make the decision not to participate in this year’s “Tennessee Trek” aka Vol State. I know that everyone who has participated and who knows me will simply think that I am weak and unable to handle pain. I sincerely hope that isn’t totally true as evidenced by my completing half of last year’s event with stress fractures on both feet yet still finishing. I would take that pain over this any day.
I had determined that I would use last weekend’s 3 days of marathons to make that decision. While I feel that my lower extremities could actually handle the 314 miles even though I haven’t trained at all, my nerve pain (postherpetic neuralgia – Google it if you think I’m being a sissy) got the best of me on both days after 5 miles. It became totally intolerable by the 13th mile of day 2. I had managed to walk 17 1/2 miles on Day 1 and really only stopped because I thought that would be best for my legs. But the second day I just could not go on. I wanted to cry so many times. I know people have much worse pain but this has taken me down.
So, after I came home (actually on the way home) I realized that in another month the probability of this going away was probably miniscule. So, today I wrote to Mr. Cantrell, the race director, and told him that I wouldn’t be able to participate. It pains me terribly and I am pretty depressed at having to make that decision. It just downright sucks.
I miss challenging myself, I miss the wonderful people I meet and most of all, I miss the time with myself when I’m out on the road.
I do believe the universe is sending me a message through my body since I’ve been essentially out of the running business since the end of last year’s Vol State. But no matter how much I examine this I cannot “hear” the message. I hope I do get it soon.
But for now, I’m very, very sad.