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.

So It Goes

It's been another two weeks and it's possible (*knock on wood*, *throw salt*, *chant prayer*) that I'm finally on an upswing.

To go back a little, my barium swallow ended up going well. I had forgotten that the disgusting liquid I had to take following both of my surgeries was not actually barium, but some other horrible liquid they make you drink to test for leaks. Barium is much thicker- it's like a chalk flavored milkshake. It is gross, but nowhere near as bad as the other stuff. During the procedure the radiologist said that my wrap looked very tight, but that's probably because the wrap was still so new and my swelling had peaked. My doctor had wanted to make sure it wasn't loose.

Unfortunately about six hours after my swallow (and when it was time for me to go to physical therapy) I started to get horrible stomach cramps and I was in a lot of pain during PT and for the next few hours. I looked online and saw that drinking barium can cause those cramps, so I'm not anxious to do any more swallows any time soon.

Since that time my swelling has continued to go down. I'm still having a problem with very cold liquids and mucous, but I've been able to eat more and more solid food. The biggest problem I've been having is with vegetable skin, or other tiny chunks that don't dissolve in your mouth (like the seeds in tomato soup.) I still haven't (and won't) attempt bread or anything that gets gummy when you chew it, or meat. I've tried tiny pieces of chicken in chicken soups and the result is never good. But the best news? The other night I ate a whole roll of cucumber sushi! It was the best thing I've ever eaten. I'm craving solid food less and no longer burst into tears during fast food commercials. It's made me feel a lot better emotionally, but I'm still struggling with food in the way I struggled before my surgery.

The bad news is that I don't think my Gastroparesis has gotten any better. Now that I'm eating more solid food I'm getting very nauseous again after eating, and although I can't taste my food for hours and hours anymore (the best result of my surgery so far) I can definitely feel it. A few times I've gotten more nauseous after eating than I ever did before my surgery. I haven't been able to get into my post-op appointment but I e-mailed my doctor's PA and she said this is normal. She said that GP can get worse before it gets better after these surgeries and to make sure I'm eating small amounts all throughout the day. As it is I'm having one small-medium sized meal once a day and that's all that's going to happen for awhile. There's too much to do during the day to eat and then deal with the nausea that follows.

To put this as delicately as possible, by lower GI system has also stopped working again and that has been a real pain in the ass (LITERALLY) to deal with. My doctor prescribed me a new medication that will hopefully help. But it's $200 a month (thankfully my mom picked up my first bottle for me) and I'm still worried about things down there. Nothing is going to be easy, that's for sure! But that's life right?

26 Days Later

My barium swallow is tomorrow at 7:30am. As a person who is regularly unable to fall asleep before 5am this is going to be really interesting.

Since I last wrote my recovery has been progressing slowly but surely. I'm no longer experiencing dumping symptoms, but food is also no longer traveling through my digestive system without help. I'm still nauseous all the time. This is the way things were pre-surgery so I'm hoping that they don't stay like this. If they do... I don't know. I suppose I'll be able to call these operations total failures. I don't want to, but I don't like what my body is telling me.

Things have been hard. Hard is an understatement.

For the greater part of every day I find myself wondering if it'd be possible to pinch myself and wake up from this nightmare. I don't even try to lie to people who ask me how I'm doing. I'm doing terrible, thanks for asking.

 

I thought that time- and the ability to eat a wider range of liquids- would abate my cravings for solid food, but that hasn't been the case. I think about eating all the time. I dream about it. I would do terrible things for the ability to eat a sandwich right now. All I want in life is a sandwich. After all of this is over I don't think I'll ever eat soup again.

 

I have been tolerating slightly chunkier soups. Other forays into soft foods- such as thin cheese slices and pasta- have not been as successful. I've also been having issues with cold drinks, which is is common, but difficult because drinking anything that isn't ice cold makes me nauseous. This means I also haven't been drinking enough, and my poor body is having a really hard time keeping up.

Have you ever almost passed out inside a Target during a pre-Christmas rush? It's not a pleasant feeling. Similarly, I almost fell over dead at my grandparent's house on Christmas because I had done too much on too little during the day.

My weight loss has continued and I'm officially at 17lbs, though I believe some of that may be my usual pre-period bloat. Interestingly, my period is exactly a week late today but there is no chance that I'm pregnant. I think that's really saying something about how damn undernourished I am right now.

In other news my stimulator has been turned off since before surgery, so when I can finally get in to get it turned back on I'll be able to easily see if it's really helping me or not. Wouldn't it just be a kicker if it too wasn't helping me at all? What a year!

But to end on a happier note; we had a wonderful holiday, N continues to be my rock, and R the light of my life.

How sweet is this?

I hope you all had a wonderful holiday as well!

Recovery

After a week of low-calorie clear liquids, the first thing I wanted to do when I got home from the hospital was have a giant bowl of creamy soup and a milkshake. Unfortunately this plan did not work out very well. I'm not sure if it's dairy, sugar, or just the fact that I'm putting anything in my GI system, but eating or drinking anything (except for water and green tea) almost immediately makes me feel awful. It's possible that I have in fact developed dumping syndrome, but my digestive system is still healing so a lot of wacky things might be happening now that might now happen in the future. I refuse to have any hope though.

I'm so burned out on broth and jello that I've been mostly drinking smoothies lately- with varying success. My food intake has been averaging one smoothie a day plus water (plus iced tea when someone brings me it) and therefore I have very little energy/ motivation/ will to live. I need to pick up some instant breakfast shakes (I refuse to ever have Atkins, Ensure, or Boost ever again) and see if I can get some calories that way. I've lost 10lbs since surgery and trust me, this is the worst diet ever. I would gain many, many pounds in exchange for a normal digestive system.

I'm not sure if the fact that I literally can't eat real food makes things psychologically harder or easier than when I was on the pre-op diet. I'm actually leaning towards harder because I know that no matter how hungry I get, there are very few things I can actually ingest. A few nights ago I got desperate and ate a chip. I made sure to ground it into mush in my mouth before swallowing it, thinking that was good enough and IT WAS THE WORST MISTAKE OF MY LIFE. (Only slight hyperbole.)

I believe that the chip mush got stuck in my wrap (the bottom part of my esophagus that they wrapped my stomach around) and the pain was horrifying. I actually considered going to the hospital. The best way to describe it is someone wildly stabbing you in the stomach over and over, in really intense waves. What my body really wanted to do was vomit the chip mush back up, but because this surgery has made my body unable to vomit all I could do was gag and dry heave all the while my mouth was watering profusely. I had done a stupid, bad thing and I paid for it dearly. I do not want to make that mistake every again.

Unfortunately I think the chip incident has damaged my wrap a little, and set my healing process behind. I've had reflux the past two nights which has been really concerning. And then last night I tried to eat very mushy (and very thoroughly chewed) scrambled eggs and I was hit with the same stabbing pains. Luckily I didn't start gagging and heaving again. The eggs tasted so good but I just couldn't get them down. I gave the plate back to N crying. I've been doing a lot of crying lately.

I've been asking myself again and again if it's been worth it. I got these surgeries in order to be able to eat without nausea, bloating, and constipation. But right now I can't eat at all without some nausea, a lot of pain, and the opposite of bowel issues. The difference now is that I physically can't eat things that make me suffer (to an extent, i.e. chipgate 2014)- something that I used to do every day.

I have a long, long couple of months ahead of me and if I don't stab anybody at the various Christmas dinners we attend it's really going to be a Christmas miracle. Be thankful if your body has the ability to eat, digest, and expel food properly. I wasn't. And you never know what you have until it's gone.