Tuesday, September 20, 2016

Enough, already

I have learned the hard way over the years that there is never a quick fix for anything. But come on! 2 1/2 weeks and I still can't sit up straight and the pain is killing me.

These past couple weeks have brought me closer to suicidal than anything has in years. Apparently having swelling and narrowing of the colon is not something that you can fix fast. I am still on the increased dosage of Tramadol, but that just isn't taking the pain down. And now my back is killing me because I am unconsciously hunching over and it is pulling muscles in my back and ribs. Having constant pain for this long has me depressed and anxious and my tolerance is not there any more.

I had yet another doctor appointment yesterday, this time with my primary physician. He, of course, has been read in on the situation. He explained that since we don't know exactly what is causing the problems - and we won't until they do the colonoscopy - he can't put me on stronger pain meds. Apparently they can cause more problems than they fix. The trick, he said, is to keep the colon working smoothly and any kind of opioid will cause it to jam up instead, which will put pressure on the swollen, painful areas and cause even more pain.

So, we are doing a bunch of other things that hopefully should bring the pain down in a few days, but aren't helping me much right now. I am on MiraLax to keep things going nice a smooth so that the colon doesn't get more irritated. And I am now on 2 different antibiotics. There is no overt indication of infection, but there might be one. And the antibiotics also work as anti-inflammatories, so that should help. I just need to give them a few days to do their work.

In the meantime I am grasping. And I am confused and scared and angry. I am still as stubborn as hell and make myself keep going despite the pain. I still drag my self out of bed, make myself eat breakfast, force myself to get dressed and pretend to do something productive. Because that's what I do. Sitting around sobbing isn't an option. It's not productive. Same with lying in bed all day. If I'm going to be depressed, I'll do it while sipping coffee and reading a book, not curled up with my head under the covers.

On the other hand, I have hit the point several times where the pain is so bad I just can't do it. I am curled up on the couch saying "I can't do this" over and over in my head. It is those times when I consider breaking into my mom's morphine stash and just taking a handful. Either it will bring the pain down so I can sleep, really sleep. Or it will stop the pain altogether and I can SLEEP. All of it, the pain, the depression, the anxiety, the fear, the confusion - all of it will end.

Fortunately I have had something to distract me from those thoughts before they get too overpowering. One of the cats will jump up on me and start purring. I will think about my niece whose birthday is this week and I would miss seeing her blossom into a beautiful young woman. I get a message from one of my wonderful friends just to say hi and to send me virtual hugs. These little things help me hold on just a bit longer.

Hanging on. Still hanging on.

Tuesday, September 13, 2016

Update: Now What?

I finally got some data today on what is causing my physical problems. As always, it is a good news/bad news situation.

First, I had my monthly appointment with my psychologist, Dr. Nielsen. He got a tearful earful on what has been going on. He asked good questions, was pissed off at the ER doc, and reassured me that it wasn't my fault I had no pain management. Yes, I forgot to ask during the doctor appointment last Tuesday, but he said it should have been part of the plan when I told the doctor that my pain was at an 8. Dr. Nielsen is also an MD - he started out his career as an ER doc and got his psych degree later in life - and he said it was OK and safe to increase the dosage of my Tramadol. He said if that didn't work and I still hadn't heard from my regular doctor that he would get me a prescription for Lortab or whatever we felt was needed to control the pain. 

Note: the increase has done some good. I still have twinges and some aches, but it is in the tolerable range. We'll see. 

After getting home from my appointment with him, I called my regular doctor and left another message. I am impressed with myself that I managed to not sound pissy. Years of customer service jobs still come in handy. I heard back fairly quickly. It turned out that the imaging results never got to his office so they had to make calls and such to get a copy. And here is where the good news/bad news kicks in. There was actually something on the CT scan that can cause my kind of pain. I know it is weird to be excited by that, but I have had far too many tests come back "there is nothing wrong" that I am thrilled to have something show up that isn't "normal." The bad news is, the abnormality is two sections of bowel with thickening in the walls. It doesn't sound like much, but the list of causes don't include anything good. 

So, the next step is a colonoscopy (apparently they don't even buy me dinner first) to find out the cause. Then we go from there. My doctor supported the increase in Tramadol dosage and added that he would also be willing to prescribe something stronger if needed. He also put me on MiriLAX to hopefully make by bowels a little less cranky. 

By the way, Cranky Bowels would be a great name for a Death Metal cover band. 

So, we know something is wrong. Hopefully it was caught early enough to find out what it is and treat it before it gets nasty. I am trying not to dwell on the fact that if that (enter expletive here) ER doctor had done his job and gotten me a CT scan last Sunday we could have found all this out a week ago. But my pain is down and we'll see how that goes. Oh, and my kidneys are still awesome (high 5). 

Sunday, September 11, 2016

Pure Willpower

Pain is a funny thing. Not funny ha ha, of course. But strange and unpredictable. You can damage your elbow and feel it in your neck. You can have an ovarian cyst and you feel it up by your gall bladder. The arthritis will flare up in my wrist and it will feel like like the middle of my forearm is on fire. Thanks to the nerves and their strange ways - and mine are stranger than most - you can never really know where the pain is coming from unless it's something obvious like a bone sticking out through your skin.

It has been a week now since my ER visit because of intense pain in my side and nothing has been decided yet. I was sent home with no extra pain meds or even any advice on how to lessen the intensity. My regular doctor did an exam and ordered a CT scan, but he won't see the scan results until sometime tomorrow. He recommended heat to see of that would bring down any inflammation, but I am left with the big questions of where? Where is the pain really coming from? Yes, it hurts on my sides - both of them, by the way - but it also hurts in my back, in my shoulders, and in my pelvis. It is like my nerves are playing a sadistic pinball game and I just can't keep up.

Not only that, but have you ever sat with a heating pad during the summer? Ugh! It leaves me wanting to go sit in the fridge for an hour.

I have been trying to take it easy so as to not aggravate whatever the hell is wrong with me, but stuff needs to get done. I had to drive myself to the CT scan on Friday. On Saturday I had to drive to the store to get two of my prescriptions and a couple of other necessities, such as ginger beer to counteract the nausea that comes with the pain. No matter how bad it hurts, I still have to eat, and that means getting to the kitchen and fixing something. Taking a shower is pure hell, but after sitting with a heating pad I definitely need one.

I am in a place I haven't been in for a long time - running on pure willpower. I so badly just want to collapse on the floor and sob, but that won't do me any good. It will actually make things worse. I feel so sick all I want is to sip the ginger, but I need real food so I force myself to eat and then force myself to keep it down. I am clinging to the hope that tomorrow something will be found and it can be fixed. If nothing is found, I don't know what will happen. I have nothing left. My claws are slipping.

Sunday, September 4, 2016

Suicidal? Or just extremely pissed off?

I can't live like this. I really can't. And I am getting really tired of having my pain trivialized.

My body has been under some sort of stress for about a month. I had a period break through the depo shots - a big sign that something bad is going on - and I have been breaking out in cold sweats while doing the simplest things. I have had contact hives off and on. And for the past week I have had progressively worse pain in my right side. I called the doctor's office and made an appointment for the soonest they have. Because of the holiday, the earliest they had was Tuesday. This was Friday. I could last a few more days, right?

Not a chance. This afternoon the pain got so bad that I was dizzy and nauseated. I couldn't take a deep breath and I was sweating like crazy. My Dad was at work so I had to drive myself to the ER. I took my Mom with me for moral support. By the time we got there the pain was a 9 or 10 on the 1 to 10 pain scale and I was holding off an anxiety attack by pure willpower.

They got me in a room and did urine and blood tests. They put in an IV and gave me an extra pain medication and something for nausea. The nurses were great. They got me set up with a warm blanket once the sweats had stopped and they were great about explaining what they were doing with all the wires and such.

The doctor was nice. I'm sure he knows his job. But I really want to beat him with a stick. When he came in, he asked the basic "where does it hurt." Then he said that phrase I really hate: "What took you so long to have this checked out." AAAARGH!!! I explained about the chronic pain and how it's hard to distinguish new pain from old. Then he asked the question I really, really hate: "What do you think it is?" How the fuck should I know? If I knew what was wrong I wouldn't be at the ER!

It took about 2 hours for the tests to come back. My mom was great and she called my dad to keep him in the loop. Then the doctor came back with the test results. He said it was good news. Nothing was wrong. My white blood count was great and no sign of kidney, pancreas, liver, or any other major organ having problems. It was just normal pain.

That was when the full-blown anxiety attack hit. Normal pain? What the fuck is normal pain? I don't care what kind of chronic pain conditions I have, a pain level of 9 or 10 is anything but normal. He told me to follow up with my doctor and he might run more tests if he feels the need. So I'll still be seeing him on Tuesday. Then the nurse disconnected everything, I put my shirt and shoes back on, and I drove myself and my Mom home.

But as I sat there in the ER with wires running from my chest, a bloodpressure cuff on my arm, and a needle stuck in my arm, I just couldn't help but think that I can't live like this. I have already conditioned myself to believe that doctors are useless. I am trying to break that, but this experience just made it a whole lot worse. And if the doctors I am supposed to depend on to take care of me tell me everything is great and it's just "normal" pain - well, that is more than I can deal with. I am pissed. I am exhausted. I hurt. I am still shaking. I still can't breath. I need someone to tell me that something can be done to help me. Because this is more than I can live with.