Chronic Guilt

I wouldn't say I've been handling being sick well. I certainly wouldn't call myself strong. I spend a lot of time crying and feeling bad for myself, but even more so I feel bad for my family.

Growing up my parents were very into "pulling yourself up by the bootstraps." No effort I could show was good enough for them. I put all my energy into 1) staying alive and 2) going to school and getting good grades. When I was too exhausted to clean my room, or go outside, or function in just about any other way, they would be mad at me. Part of me understands where they were coming from. They don't know how emotionally and physically exhausting it is to fight bipolar disorder. They couldn't see that I had autoimmune hypothyroidism, or that my digestive system was starting to fail. My disabilities were all on the inside, and therefore they didn't view them as real.

My parents, like most other people in the world, are able to wake up with a full tank of gas. Mine never registers past a quarter tank. I can say this with certainty having lived through phases (sadly short lived) where I've had normal-person energy. These days my tank feels even emptier. I continue to struggle with my mental health, and my physical health is worse than ever. Add in taking care of a highly, highly energetic three year old and I'm running on fumes constantly. I feel like there's nothing inside of me.

And yet I have never been able to shake the guilt that my parents instilled in me that I can always do better than my best. Despite the fact that I know it's literally impossible, it's still a huge source of guilt and grief for me. Why can't I just suck it up and get shit done anyway? My mom raised three kids and always kept a clean house and cooked dinner every night. She even worked a little bit! Why can't I do the same thing- especially since I have a strong desire to do so.

I don't like living like this. I don't like feeling sick and tired all the time. I don't like living in a dirty house, or not being able to cook for my husband who works all day. I don't like crying myself to sleep every night.

So what do I do? I do what I can. I take medications every day that help me in one way and hurt me in two. I spend more time with doctors than I do with my friends in order to figure out what's wrong and how, and if, it can be fixed. I go through scary, invasive surgeries that don't come with any positive guarantees. I wake up with R and I feed her and make sure she's happy and going to the places where she needs to go. Even when I'd rather be in bed or next to a toilet- which is all the time.

Is this good enough for me? Of course not. I absolutely believe that my family would be better off without me. N deserves a better wife and R deserves a better mother. I want to be those people but some days (ok, most days) I don't feel like I'll ever be able to be. I exist in a spiral of shame and sickness that I'm not sure I'll ever be able to pull out of.

Sometimes R sees me when I'm crying. I don't like to show pain or sadness in front of her, but sometimes it's unavoidable. She's a very empathetic child and she'll hug me and wipe away my tears. She'll tell me that everything is going to be ok, even when I feel like it's not. But this is why I keep going. Because I have her. And I have N. And I have the rest of my family, and some amazingly supportive friends. Making the choice to go on isn't always easy, but I know it's the only choice I have.

To quote one of my favorite quotes from one of my favorite movies:

 

"I know it hurts. That's life. If nothing else, it's life. It's real and sometimes it fuckin' hurts, but it's sort of all we have."

And right now, this is what I have.

Eight Weeks Out

I've been trying to write out this post for a few days now without sounding like a total downer and I'm having a hard time. Things aren't good, and I don't like always having to talk about how things aren't good. I'm exhausted enough living it.

When I was struggling before my diagnosis, after my diagnosis, and after I was told what surgeries would be best for me, I took to the internet to try and find other personal stories. There was very little out there, and I clung to anything I could find. There was only so much solace I could take in the percentages my doctor gave me; I wanted to hear real stories told by real people.

And that's why I keep blogging. I may only hold the tiniest corner of the blogosphere, but if someone out there is asking the same questions that I asked then I hope they can find me, and I hope my stories will be helpful to them.That's why I keep writing about my health. It'd be a lot more pleasant to pretend everything was wonderful and that I had a functional body, but that's just not the case.

The good news, and the only good news, is that my ability to swallow has continued to progress and I am hardly refluxing anymore. I can eat almost all soft foods along with rice, crackers, chips, and even small pieces of meat. I've come a long way with chicken. I'm still struggling with cold liquids, anything leafy, skins, and other small and hard objects. Oh, and my bowel medication has been working. I still don't feel as good as I would if my lower GI system worked, but the improvement has been more than I could ask for (even if it's expensive as hell.)

As for the bad news, my digestion still hasn't improved, and the gagging up mucous issue has only gotten worse. I caught a cold last week which has made things much worse, and let me just say that gagging up a handful of mucous in front of all the other moms at dance class is an experience I'd not like to recreate. I was able to get an appointment and talk to my my doctor about these issues, but he said I need to give my body at least 9 months to heal and reach a new baseline. Only after that can we re-evaluate. This was pretty disheartening to hear, but at the same time I'm almost at the end of my options. The only other treatment we could consider is a partial gastrectomy (removal of the stomach) and if it comes down to that I'm going to have a lot more thinking to do.

On top of my GI issues, my insurance company has decided to charge us $850 a month for my anti-depressant. Obviously we can't come anywhere close to affording that, and the generic version of this drug is well known for causing issues- and I refuse to take generic psychiatric medication anyway. The only option I have is to wean off of it, and seeing as how I'm already struggling immensely with depression right now, this is going to be a big hit to my health. This was an end of the road medication for me, and right now there aren't any other drugs or classes of drugs that would be right for me to try. I know I should get into my psychiatrist to talk about this, but it's another $150 we can't afford to spend right now.

With all these bills I've had to stop physical therapy, and my headaches have been out of control. They can become completely debilitating, and on top of all the other horrible sensations my body is producing, I just can't deal with them. My last round of Botox seems to have helped a little, and if money permitted I'd have it done again. Of course, money does not permit. The other night I spent an hour in the bathroom just banging my head against a wall, trying to relax my skull muscles. It was very painful, but actually helped a little bit.

But the icing on top of this shit cake is a nice little side effect of my bowel issues that has caused me to see a colorectal doctor, and schedule a fun procedure I won't tell you about because well, you really don't want to know.

When it rains it pours, and I'm ready for the sun.