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.




humira #lupus #stilldisease

I had a good doctor appointment on Thursday. I’ve been on Enbrel for the past four weeks, and seeing some subtle changes. My doctor walked in the room and immediately noticed that my skin is no longer covered in a mottled red rash. He seemed really surprised about it. I think “giddy” would be a better word for it.  I hadn’t noticed its disappearance myself. I guess I hadn’t been paying much attention to it, but now that he pointed it out, I can say that he is definitely right. I don’t know how long I’ve had autoimmune activity, but I can tell you that I’ve had that mottled rash since I was a kid. I never thought much of it. I do remember noticing it would get worse when I was cold or anxious. I remember my first day of second grade, being the new kid, and my legs were covered in it.

I’ve honestly never had a doctor be that excited for me before. In the past year I’ve become extremely skeptical of finding a treatment that would bring me some relief, but I’m starting to think differently.

I have a lot of gastrointestinal symptoms, including gastritis and esophagitis, which at times can be pretty painful. This week my doctor switched me from Enbrel to Humira. Both are TNF blockers, but Humira is a biologic that can sometimes help with GI inflammation. Also Humira is a nice switch because I only have to do the shots twice a month as opposed to the once-a-week Enbrel shots.

I did my first Humira shot 2 days ago and I am noticing a change in my GI tract. I didn’t realize it would work that quickly. I don’t think it’s a coincidence, because I’ve been feeling horrible for months and all of a sudden I just don’t feel so completely awful anymore. I’m still having some pain and heartburn, but something seems different.

I ate a snack today and didn’t regret it immediately after. That’s a big deal.

Maybe at some point I can eat real food again. My diet has gotten so bland it’s actually grossing me out. I miss pizza. And chili fries. And flavor.

My doctor has mentioned the possibility of vasculitis being present in other parts of my body. It’s hard to really know for sure. For the past 3 years or so I’ve had to cut out almost all salt from my diet, because I would have a bad reaction to it right after eating. My blood pressure suddenly became high. Both are strange occurrences for me because I have a disease (Addison’s disease) that usually requires a higher salt diet and usually tends to present itself with low blood pressure. It might be too soon to tell but it seems like lately I’ve been able to eat salty food without feeling that terrible after. It would be nice to be able to eat a small amount of salt again, considering how hard it is to leave out salt. Plus salt is flavor, and I like flavor.

All of that is of course a theory, but it makes sense to me.

I’m still having some fevers, but overall I don’t feel as hot as I normally do. It’s hard to gauge sometimes because the weather is still so hot here. But I’m having a few hours a day where I’m not uncomfortable. It’s been pretty nice.

I am having some trouble with my lungs. I suppose I have been for a while. My cardiologist’s assistant said she heard some tightness in my lungs. It definitely feels tight. I get short of breath easily. It has been affecting my sleep for a while. I’m going to see a pulmonologist. I had asthma as a kid and I do think that to some degree I still do. But I also think there is some other kind of inflammation going on as well. It’s gotten gradually worse like all my other problems. I’m doing a repeat stress test on my heart just to make sure, too.

My next Humira shot is on the 29th. I’ve got a few more doctor appointments coming up too.

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 results #lupus

I met with my GI today to talk about the endoscopy I had 2 weeks ago. He showed me some pictures he took during the procedure. I do not have any infections. The tissue samples showed mild chronic gastritis and esophagitis but there is no evidence of pre-cancer. He showed me the mild inflammation in the pictures. The tissue samples also showed that I do not have Celiac Disease or serious food allergy. He showed me the hiatal hernia and how it causes the lower esophageal sphincter to not close completely. This is why I have acid reflux.

We are going to try to control it with diet first. I have already eliminated most, of not all, acidic things from my diet because they make me feel horrible. Even though I don’t have food allergies, it is possible I could still have a gluten intolerance that is causing some of the gastritis and esophagitis. I’m going to give up gluten for a few weeks and see how I feel. It won’t be that hard for me. I eat pretty bland anyway. I’ve just gone shopping at Whole Foods and bought stuff made with rice or corn instead of wheat. I’m trying some different vegetables for variety.

Ultimately, it would be great to see a dietician. Between the acid reflux and the salt and sugar sensitivity, it’s been really hard to know what to eat. My GI wrote up a prescription in hopes of getting the insurance company to realize that it’s medically necessary. A lot of the time, a doctor like a dietician isn’t covered by insurance. Insurance companies have a very “Well, you don’t really need it…” attitude when it comes to certain fields of medicine. Things like massage and a nutrition plan could really help people be healthier but since people can get by without it, it’s not covered. If only they realized that letting their customers get by instead of helping them get well actually ends up costing them more money.

I’ve been making an effort to sleep on my left side more. It’s hard when you have chronic pain to sleep on the same side all night. It does help keep the acid down at night though.

The doctor told me that my hernia and acid reflux could be responsible for my heart palpitations and shortness of breath. I’ve had every test under the sun to figure out what has been causing those things, and so far they’ve found nothing. I do notice a relationship between eating and those symptoms sometimes. Sometimes I seem to get it for no reason too.

I’ve been weaning off the Pamelor (migraine med) for a week. Weaning off antidepressants blows. I did notice I could concentrate a little better for a few hours yesterday. I had a headache last night. It wasn’t too bad though. If it was a bad one, I’d still have it.

That’s it for now. My next Actemra infusion is May 12th.

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.

Methotrexate, and GI appointment. #lupus

I saw my rheumatologist a couple weeks ago, and we’re going to continue the methotrexate for the full 12 weeks. He talked about adding another rheumatic drug after, like xeljanz or imuran, and the kineret could still be a possibility as well. It will probably be easier for my doctor to persuade the insurance company to cover another drug if he can tell them that we have already been using methotrexate. Some of the other drugs can be used with methotrexate for additional benefit, too.

Lately I’ve been waking up in the night with red hot itchy joints. It’s also been happening in my feet. My evening fevers seem to have turned into early morning fevers. I have the butterfly rash pretty regularly now. I’m having hard time with getting dizzy when I look down for too long, like when I’m crocheting or on the computer. My neurologist actually brought up something interesting, revisiting the chiari diagnosis. He is the first doctor to say that there is some “grey area” when it comes to diagnosing what is and isn’t chiari. My cerebellum is herniated 6mm, but Dr. Batzdorf told me it wasn’t chiari. My neurologist calls it “Tonsillar ectopia” which is fancy for herniated cerebellum. Because my cerebellum is a little low, looking down probably puts pressure on my brain stem, and that’s why I get dizzy. There isn’t really definitive criteria for diagnosing chiari so I’ve seem to have fallen into a grey area category. I do think most of my headaches are from the vasculitis and not from the tonsillar ectopia. But some of the dizziness and headaches I get from turning my head in certain directions for too long I think could be attributed to the tonsillar ectopia. Knowing what I know now about the vasculitis, I’m glad I didn’t go in to get the surgery. The surgery doesn’t have good statistics anyway.

A couple days ago I went to see a Gastroenterologist. I was surprised they had an appointment for a new patient available so quickly. We talked about my heartburn issues, and the medications I’ve tried for it. He is going to perform an upper endoscopy in a few weeks to take some biopsies and check out my esophagus. They’re going to use anesthesia so I won’t have to be awake for it. I’ve never had anesthesia before. I will probably need some form of hydrocortisone for the procedure because of the Addison’s Disease but I have to contact my endocrinologist to find out if I can just take an oral stress dose or if it has to be IV. I also have to stop taking ibuprofen 5 days before the endoscopy to help avoid excessive bleeding, which means no Duexis for 5 days. I believe a lot of my headaches to have an inflammatory cause so I’m not sure how I’m going to get through those 5 days. I skipped a day and a half of Duexis once and I definitely felt it. Also, the Duexis helps with the pain and inflammation in my esophagus. Before I was taking it regularly, I had trouble swallowing certain foods and I had pain bad enough that I couldn’t wear a bra. Now that I take it twice a day I don’t have the pain or trouble swallowing as much. It probably doesn’t help the acid but without it I’m not able to eat certain foods.

The doctor explained that sometimes the acid reflux can be caused by food allergies, similar to how certain allergens can cause asthma. He also talked about certain bacteria that can cause acid reflux and ulcers, too. He talked about the possibility of a hernia also, and being able to check for all these things on the endoscopy. He was pretty good about telling us about all the risks involved, but assured us that he’s never had a problem before in the thousands of endoscopies he has performed.