Sweet n Salty

Pain & Guilt

Early mornings are not my jam. But it’s the price I have to pay to drive down to Phoenix for my doctor appointments. I have two today. My first appointment, I’m FINALLY seeing the liver specialist. I’ve been waiting to see her for almost 3 months, if not longer! I’m really hoping that she can have some answers for my pain. Honestly, it was so nice to be in the hospital this week, because I was completely PAIN FREE. That’s such a rare feeling, and it’s amazing how much more human I feel when I’m not constantly hurting. And when I wasn’t hurting, my nausea was so much better too. It’s sad when a day spent in the hospital is a better day than when I’m home. Like, the more I think about it, the more fucked up I realize that is. And that’s the thing about the opioid crisis is that it really fucks over those of us that actually really need the medication. With my GI issues, taking oral medication isn’t very effective for me, because I have malabsorption problems. So while a normal person might get the benefits of all of the pill, I only get a percentage of the effects. So that severely limits me to what I can take and how much. So there’s only one pain medication that actually works for me - IV fentanyl. I get all of the good benefits of the medication and little to no side effects that I get from other pain medication (itchiness, anxiety, nausea).

Driving home from my dr appointments. Wow, that was a lot to swallow. So the liver specialist is ordering a myriad of tests including blood draws, an MRI, and an endoscopy to see where I am on the liver transplant scale because she said that eventually I am going to need a liver transplant. But for right now I’m in the early stages of the cirrhosis. She said I could go 10 years and not need one, or it could be 5 years, or it could be 2. But I guess there’s a certain algorithm they use to predict how long it will be until I need a transplant or not. I guess the number is 16 or above, then it’s time to put me on the list. I was hoping she would know what’s been causing my abdominal pain all of these years. But she said that cirrhosis is not the reason I’m hurting. Because cirrhosis is inflammation of the liver and continual inflammation creates scar tissue. And that scar tissue minimizes the amount of active nerves in the liver.

So no, I still have no answer to why I’m in so much ungodly pain all of the time. I felt so helpless and overwhelmed after the appointment that I just crumbled and cried right there on the examination table after the doctor left the room. It’s been 3 days since I was released from the hospital and I feel like the pain is growing, mutating, consuming me. It’s not getting better. I’m wrestling with the idea of going back to the ER or to ride this wave out. It’s not an easy choice to make. And there’s this feeling of guilt that eats away at me every time I have to make the decision of do I stay or do I go? Guilt that I’m being selfish by choosing to go. Guilt that I’m putting undo stress on my mom and my sister, and my dad, if I decide to go. And then it can go either way. I can get a really great doctor who understands and is sympathetic or I could get some cold, dubious “doctor” who thinks I’m just seeking drugs. Which is laughable. I used to be on fentanyl patches and a dilaudid pump - two of the most powerful drugs in the country and I worked my BUTT off to get off of both of those drugs! My liver doctor reminded me today that not many people can say they’ve done that, and I should be proud of myself. And I am. But what price am I paying to stay off of those drugs?

I don’t know what to do. I feel super guilty about even entertaining the idea of going to the ER.