Acid reflux update #lupus #spoonie

For the past couple weeks, I’ve been losing a lot of sleep. I’m pulling all-nighters sometimes because I can’t breathe when I lie down. When I do sleep it’s for about 4 hours at a time. I’ve had this problem for a while and it’s gotten to the point where it’s greatly disrupting my life. It’s hard to make plans or appointments when you don’t know if you’ll be able to sleep or not the night before. Sometimes I end up sleeping during the day and it fucks up my medication schedule. I’m so exhausted, and I dread bedtime.

Yesterday I had a barium swallow test. Basically you swallow a thick radioactive liquid while in various positions and they watch on a live x-ray to see how your muscles work, and if it comes back up. They were able to determine that my acid reflux flows all the way up to my esophagus. I already knew this, since I clear my throat all goddamn day long, but I needed them to know it. It was probably a weird thing to tell the technicians, but I said “I’m so glad you guys found something, I’m sick of tests coming back normal.” I feel that way because I know something is wrong and I’m tired of not finding it.

Today I got a second opinion about everything from another GI. I feel like my current one isn’t doing much to help me. His idea is to avoid surgery and control everything “as naturally as possible”, meaning without pills. I’m doing everything I can do, and I’m losing weight and not sleeping. I feel like I can’t even breathe most of the time during the day. The second GI seemed irritated that my other doctor hasn’t been doing much for me, and says my reflux is a significant issue. He gave me erythromycin because in very small doses it is used to promote more gastric motility so my food moves past my stomach faster. We’ve scheduled a manometry which is a test that will determine the level at which my lower esophageal sphincter is functioning. Basically they’re checking to see if the muscle between my esophagus and stomach closes efficiently, which we know it does not, but they need to understand to what extent.

I am also scheduled from my first GI to do an ultrasound on my gall bladder to see if it is perhaps enlarged or inflammed. This could possibly be creating too much acid, or creating the “full” feeling I have a lot of the time

I believe my breathing problem is caused by my acid reflux. If I have a rare night where I don’t have reflux, I sleep just fine. I can’t sleep on my right side. The barium swallow test showed us that especially.

I’ve asked about breathing problems in a GERD support group, without much luck. People always like to pull the “sounds like anxiety” bullshit. I have anxiety and I know what it feels like, and trust me,this is different.

My second GI believes I need surgery, and I do too. There isn’t really  a pill or a diet that that is going to stop reflux if your stomach doesn’t even close up all the way. He talked about doing a laproscopic fundoplication where they fold the top of your stomach around the bottom of your esophagus a little and stitch it to tighten the space between the esophagus and stomach. That way, the stomach would close and there would be no more reflux.

I really would love to feel better.




Gluten-free #lupus

I’m almost a week into eating gluten-free. I went to Whole Foods and I bought all the gluten-free staples, pasta, bread, crackers, and a few other things. It was a good reminder how fucking expensive it is to be sick. I basically doubled my grocery bill. A loaf of gluten-free bread runs around $7.50. It’s hard to find anything in Whole Foods that is under five dollars.

So here I am, wandering around this supposed health-food wonderland, still having to put items back because of certain contents. I was finding that a lot of the products, while “organic” or “yadda-yadda-free” still have an unhealthy amount of sodium or sugar in them. Maybe it’s just me, but I feel like for what they charge for groceries, I shouldn’t even have to double-check the nutrition facts. Whole foods is a gluten-free superstore but for anyone that has to eat low-sodium or low-sugar, it is as frustrating as anywhere else.

I guess my point is, no matter how “healthy” packaged food claims to be, it just isn’t.

The gluten-free foods I’ve been eating haven’t been that bad, but you can certainly taste a difference. It’s like eating NASA space food. It just doesn’t seem like real food. If it becomes all you eat, you could probably get used to it…eventually. Mostly my problem with eating these foods is they don’t seem to digest. I feel full for hours after eating it, and it’s not a good thing. I have gastritis and I already have a problem with feeling full too easily or for too long. It’s uncomfortable and at this point I’d just rather eat real rice than pasta made from processed doughy rice foodstuff.

The organic vegetables have been pretty great. I might try to buy them more often. I’ve been eating more of a variety since going to Whole Foods. Between the acid reflux and the salt and sugar sensitivity, my diet hasn’t been as nutritionally varied as it used to be. I figured I can try to get some variety by starting to eat different vegetables.

My stomach doesn’t feel any better since eating gluten-free. The doctor just wanted me to try it for the heck of it to see if it would help the inflammation. He didn’t want to put me on any prescriptions right away because they can sometimes cause problems with calcium absorption and weaken your bones. I understand his point, but also my diet restrictions are ridiculous, and could also be causing deficiencies in other vitamins and minerals. I can’t have anything even remotely acidic. If I eat one wrong thing I could risk being up all night with acid reflux. I’ve basically given up fruit. Food is depressing.

I wanted to go see a dietician so maybe I could get a clue as to what the fuck to eat. Most of them don’t take insurance. They seem to be part of that “Malibu Barbie” plastic-surgery-gym-health culture, and I don’t know how much they would be able to help someone like me. I can just picture walking in to a clinic where everyone has fake tans and fake tits, and feeling totally out of my element. I don’t want to be in an environment where they’re trying to sell me something instead of trying to help me. Perhaps I’m getting too far ahead of myself. But I want a dietician that practices real medicine. It would probably help if I didn’t live in California.

End rant.

Endoscopy #lupus

I had the endoscopy today. I don’t feel groggy, just tired. I have a headache. I’m having some heart palpitations, which is probably from the IV hydrocortisone. Steroids can make you wired, I might be wired from it all night. Normally functioning adrenals produce their own levels of cortisol to manage stress, but since I have Addison’s Disease, I produce no cortisol, so we have to do it manually via hydrocortisone. Lack of cortisol is fatal. Cheers hydrocortisone.

I wear a MedAlert bracelet for my Addison’s Disease. My current one looks like a green livestrong band. I like to have it on in case there is ever an emergency where I can’t communicate. It has “Addison’s Disease” on one side and “Steroid Dependent” on the other. In retrospect, I wish it said “Hydrocortisone dependent” specifically.


I arrived at the hospital, checked in at a few different places, and was in the waiting room for an extremely long half-hour. When I was called back, I changed into a hospital gown (a fabric one, yay!) and bagged up my clothes and shoes. They showed me to a bed in a busy pre-procedure room, and a nurse sat with me to take a history of my diseases and medications. They gave me a quick EKG to check my heart. They put a pulse monitor on my finger, which was later required on my ear, since my hands are cold. They put in the IV, and a blood pressure cuff on the other arm. It took them an extra few minutes to make sure they had the IV hydrocortisone order for the anesthesiologist. I talked to a few nurses, the anesthesiologist and his intern, and finally the doctor came in. By then I was pretty relieved to see him. He has a bubbly personality which can be helpful when I’m anxious. The anesthesiologist was going to have me gargle a numbing solution to numb my throat for the camera. The doctor said I probably wouldn’t need it. There was a lady next to me who had experience with endoscopies and she told me she prefers not to have it. My doctor must be pretty good with the camera because my throat isn’t sore at all.

I was wheeled into the procedure room. Up until now my mom had been with me. She had to go back to the waiting room. I don’t care how old you are, the part where your family has to go to the waiting room always sucks. Suddenly I’m surrounded by 5 strangers, hooking up my IV and taping stuff to me. They put a plastic device in my mouth to hold it open.

Then I woke up.

It was over that fast, at least for me. When I realized I was awake, and where I was, I cried. I remember telling the doctor I thought I was on the couch watching TV. The nurse dried my face. I think she felt bad. Maybe people don’t usually cry when they wake up. I told her about a spinal tap I had that was unpleasant, and how I had a similar reaction when it was over. I kept talking and telling her about random things so I could keep it together. I felt like having a panic attack. I had already been done with the procedure for 20 minutes when I woke up. It didn’t feel like it.

They brought me into the recovery room. It’s strange how quickly you wake up from propofol. I wasn’t even groggy. I was only regular “Lupus tired”. My concentration wasn’t 100% yet though. My mom came in and the doctor had already talked with her.

The doctor took a lot of tissue samples. I have a lot of inflammation, and from the samples he will hopefully be able to tell what kind. He will also make sure I don’t have any bacterial infections. I also have a small hiatal hernia. I’ve thought it a possibility before. He said it probably won’t get any worse than it is now. I will most likely be able to treat it all with a new medication.

I had a grumpy recovery nurse that luckily went to lunch, and in her place was a bubbly RN. He was fun, which makes all this medical stuff a lot easier to deal with. He liked my bracelet. I was really glad to see my mom. It doesn’t really feel over til you see your mom.

I had some ice water. They monitored my vitals every 15 minutes. The RN also gave me a post-procedural dose of hydrocortisone. I was a little headache-y. After the RN finished writing up the post-paperwork, I was able to get dressed. They wheel-chaired me down to valet parking.

I have a headache right now. But I probably would regardless. I do have a little bit of pain in my lower esophagus. I’ve been off the ibuprofen for 5 days and I have pain when I don’t take it. I am probably also a little sore from the endoscopy. I had trouble with heart palpitations a couple hours ago. I still feel a little short of breath. It can be a side effect of steroids.

I still feel achy from the Actemra. My back has had some soreness the past few days. If the Actemra works, I need some serious muscle rehab. My back is sore because I trimmed my toenails. I get sore from riding in the car, too. I haven’t been able to exercise or even do normal activities that would keep my back and abs strong, so I get sore from sitting. I’m hoping to exercise in the pool when they heat it next month.

The new Mario Party 10 is pretty good.