Living with Pain

So the lesser talked about side effects. First one is exhaustion, after awhile you don't know if it is from the lingering pain or the pain killers. But it is permanent. Some days when the pain killers that you take on a daily basis aren't enough, you go to the back up one, but you are already tired out from the dealing with the pain that hasn't been quieted so to get sleep you take the opioid or cbd or whatever you are trying to get relief. You don't want to get up the next day because if you took the opioid you are groggy, you are worn down from the day before still and really just want to take a day to recoup. The other less talked about side effect, gastroenterology issues. And by that I mean everything from nausea, heart burn and vomiting to diarrhea, gas, cramps and constipation. Depending on the meds you are taking, pain control meds, chemo either as infusions or oral tablets, and sometimes radiation therapy will all have their own lovely fun to add. Usually the...

Today has been one of those days where breathing hurts. I feel like Bob, my tumor, is crushing my diaphragm in like stones being piled on my chest, but also breaking ribs by pushing out from my abdomen. Days like these make me wish I had stayed home in bed and taken a back up pain med to get through the day.  I went to work, but was so exhausted I wanted to take a nap all day, and at points would get a spasm so hard it would make me gasp.  I think I finally figured out a way to describe what these tumors are like to someone so they have a little bit better of an understanding. I mark that as an accomplishment, since most people have never heard of them and when you say "benign" tumor the first question is always, "Why don't they just cut it out?". Then it's the long medical explanations of this that and the other. And they lose interest in what you are trying to explain after 30 seconds because in their mind you are not in any real danger. It's benign,...

Lately I have not been getting any real sleep. I don't sleep well to begin with, generalized pain sort of does that to you. But the past few nights the nerve pain from my tumor seems to be ramped up and the right side of my abdomen feels as if it is on fire. I seem to be having a harder and harder time finding a comfortable position where I can sleep for any length of time. I don't want to take a vicodin when I have to get up and go to work then next morning, but I fear by the end of this week I may be a zombie from lack of sleep.  The knees are iffy still. Not nearly as painful as they were this weekend, but the instability in the right knee is still there. I am hoping that it will stabilize as the days go on. I really need something to start going my way.

I recently went through viscous injections for my knees. It is done in a series of 3 shots 1 week apart. We are trying this to delay in having to do total knee joint replacements. Having gone through this and having the last injections yesterday I can say this: A) the knee that is in better condition will hurt more to have injections after the first round. B) there is the chance that the bone will actually react badly to the injections if you have bone wear and C) seems to be for me that it has made my "better" knee more unstable. Today I woke up and the knees are both extremely tender, my right knee has locked and buckled a few times on me today. I have to wait about a month to 6 weeks to know if I am going to get long term relief. I am hoping that my knees aren't so painful that I can't sleep. I just want to feel better, and I don't know if that is going to happen. I do have my back up pain med if it is too awful but I really don't want to have to take it....

I have been single for quite awhile now. I have dated here and there, had a short relationship that ended 4 years ago. I have wondered whether or not it is fair to anyone at this point to start a relationship given my health issues. Not knowing if I will be starting any sort of chemo or radiation therapy next month if my tumor has grown. Both of those come with side effects which could range from mild to severe. Whether I get in on a clinical trial which will also come with possible side effects. Is it fair to ask of a new relationship to go through all of that? I have come to the conclusion for me that it doesn't seem fair to ask that.  I am concerned about doing it alone but have made it this far and figure I can go through this on my own with the support of my family. It is not the same as having an intimate partner, but I will make this work. I do feel lonely at times, wishing I had a partner to come home to, who will message me and say "I love you, and it will be ok...

I realized with all my physical problems this is also what I grapple with. One of my coworkers often says "How can you be such a strong person and do so much and fight so hard for so many others and yet when our boss comes at you and you know she is wrong you don't speak up for yourself?" This is why. My fear of making a mistake, it overwhelms me to a point of being paralyzed. I think what I went through as a child with my father being a firm disciplinarian has made me back down from authority even if I know I am right. More when it is in a job situation because while I am not fond of how my job has changed and the insane amount of things I am responsible for, I know I need to keep it.  I also suffer with depression to the point of wanting to die at times. Recently had a scare about not having health insurance and seriously contemplated it. When you have underlying serious health issues, not having insurance or not having adequate insurance, having insanely high cop...

The past 3 weeks have been crazy. I have moved both twins in to their respective colleges and this past week has been the first with just the Oldest and I in the house. I have been getting viscous injections in my knees to try to deal with the severe osteoarthritis in hopes to postpone total knee replacements.  I have been going through hell with my tumor, there have been several days where it feels like my lung is getting crushed and my ribs are being broken by being pushed out. I have been on Meloxicam and Gabapentin for about a month. The meds have helped with some of the nerve pain but I have days where I can still feel like my muscles are being torn apart, from the bottom of the tumor to my belly button. Sleeping is difficult lately, I have the entire bed and yet I can't seem to stay asleep and find it painful in almost any position. I am tired of feeling like this, I am tired of being worn out by simple things, and mainly I am tired, period.