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.

Some stuff #lupus

I went to see my neurologist today. The ENG I had in March was normal, which means I don’t currently have any Lupus stuff in my inner ear. I get really dizzy when I look down, like when I’m reading or working on something. I was having a hard time occupying myself last week during my Actemra infusion because I was getting dizzy from looking down at a book or tablet. He suggested that I see a neuro-opthamologist to see if it’s a problem with my eyes. I feel like it has something to do with my neck, but I’ve been wanting to go to an opthamologist for other issues anyway so I will have the specialist investigate my vertigo too.

I’ve been taking Pamelor for migraines since last August. My neurologist has increased the dose twice since then. In the beginning it was messing with my mood a lot. I just didn’t feel like myself. Increasing the dose made my mood better, and I’ve been taking 30mg for a few months now. It’s hard to say whether it has really helped my migraines or not. I still get really bad migraines that aren’t helped by my other headache medicines. I get headaches whenever I have heart palpitations. There are foods that still trigger headaches. I can’t exercise without getting a headache. I’m having a problem with the Pamelor affecting my concentration. It’s really hard for me to do anything. Everything feels overwhelming. I feel like I’ve been in a worse brain fog since being on Pamelor. It has affected me so much that I’ve decided I’d rather have more headaches than continue with the Pamelor brain fog. I’m going to start tapering it off and in a couple weeks it will be out of my system.

I can do art with a migraine, but I can’t do it with brain fog.

The physician’s assistant at my neurologist’s office was extremely rude to me. I let it irritate me too much. Something got messed up, because I was supposed to get some blood work done but no one ever mentioned it to me or gave me an order slip for it. She acted like I just never bothered to go do it. I think she forgot to order it, and was covering her ass. Rather than admit her mistake, she was rude to me. Also, she couldn’t seem to decide if it was blood work from last August or if it was supposed to go with my ENG in March. I don’t see why blood work from August would suddenly be an issue now. I’ve been to see the doctor 3-4 times since then. Not to mention that a CBC and chem panel from last August would no longer be relevant now, in my opinion.

I guess the reason her attitude irritated me so much is because my whole life is doctors, treatments, pills, and tests. I’ve never “forgotten” to do anything before. I’ve never been so lazy that I didn’t show up for a test. I am always eager to get tests done because I want to know what’s wrong and what the next move is. It’s not like I’m skipping out on tests because I’m going on a booze cruise or joining a biker gang or whatever it is that test-skippers do. I’m pretty proactive when it comes to appointments. I always have my shit together, so if there was a mistake, it’s on her, not me.

I had my Actemra infusion a week ago tomorrow. I feel like crap. I’m really tired. I’ve also been nauseated, which is another side effect. I guess I just feel like I’m waiting around to feel better, kinda like when you have a cold or something. It made me really achy at first, and I had a horrible headache. It feels like the infusion pisses off your diseases at first.

I am also still recovering from the endoscopy. The doctor took a lot of tissue samples from my esophagus and I’ve had some pain there. I’ve also had pain from not taking the Duexis. The Duexis really controls the existing inflammation, which has helped with the pain and acid reflux. It sounds counter-intuitive that a form of ibuprofen would make my stomach feel better, but the inflammation is so bad that it’s actually helpful. When I don’t take it, the pain gets pretty bad, and it gets hard to swallow. I’ve started taking it again but it will take a few days to get back on track.

I’ll be in next week to see my gastroenterologist to talk about the endoscopy and what he found in the tissue samples. I’m finished with appointments this week, which is nice. I’ve had appointments every week since the beginning of March. It’s good to get things taken care of but it’s also exhausting. The trips to the doctors and the testing and the treatments are tiring and I need a break.

I have eczema on the backs of my knees. It’s pretty uncomfortable. It itches and burns, and sometimes it wakes me up at night. I’ve been using cortisone cream. I still have a burning rash on my neck and a little patch under my arms. It seems like it’s all eczema. It’s all uncomfortable.

Ta ta for now.

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.

Actemra #lupus #RA #stillsdisease

I had my first Actemra infusion yesterday. It went well. The infusion center is pretty nice, much more comfortable than my previous doctor’s office. The nurses are more attentive and they took my blood pressure every half-hour. It’s nice to have an opportunity to talk to other people who are also there getting infusions.

It felt the same as my past infusions. They didn’t give me any pre-meds. For the first half, I got really sleepy. That usually goes away during the second half of the infusion. I got a little dizzy but realized it was from looking down, a problem I’ve had for a while. It’s hard to stay occupied during infusions if you can’t look down to read. This infusion took about an hour and a half. By the end I had a full bladder and a headache, a typical ending of all infusions.

I heard the nurses talking about another patient’s Rituxan infusion. They were talking about slowing it down to 7 hours because it can be a hard med to handle. My Rituxan infusions were done in under 2 hours. It’s a good thing I handled that medication so well, because my previous doctor could have made me pretty sick by rushing it like that(and she billed me for a long infusion, too). It’s another reason why I’m glad to have another doctor now.

On the trip home I was pretty tired. I had an errand to do and I felt a little out of it. When I got home and changed into pajamas, I started to feel really achy all over. My head was hurting a lot. I’ve been taking Tylenol lately since I’m restricted from using ibuprofen and other NSAIDs for this week because of the endoscopy. I played video games for a while. I noticed my concentration was absolutely horrible. The overall aching was worse with this infusion than my past infusions. When I went to bed I took some benedryl. That seemed to actually help with the headache a lot.

Today I am really tired. No headache so far, but I had a typical daily episode of being short of breath. I took some Xanax for it. Even though it’s not caused by anxiety, it helps. If it wasn’t for Xanax, sometimes I’d be too out of breath to move.

The MRI results came back of my adrenals, as well as a full report of the rest of my abdomen, uterus, and bladder. Everything is normal. No adrenal tumors. It’s great news, but it also means I’m back to square one in figuring out why I have high blood pressure, shortness of breath, etc. My next move is to see another cardiologist for a second opinion on my heart. My current one hasn’t found any inflammation around my heart, but he did say that sometimes it can be so small that it would be almost undetectable. He doesn’t think it’s necessary to do any more ultrasounds on my heart right now. I want to see someone new so they can look at things with a fresh eye. There has to be a logical explanation as to why I am so uncomfortable all the time. I will also probably be revisiting my endocrinologist soon, because it could perhaps be hormonal as well. We’ll see, I guess.

I’m going to take it easy today. The nurse said, and I quote, “Don’t hang around a bunch of snotty kids today.” She was saying it to be humorous, of course (well, sort of). But I know what she means. I can’t be around a lot of germs today. I’m too tired to do anything anyway.

Tomorrow is the upper GI endoscopy, with propofol anesthesia and IV hydrocortisone adrenal support. My rheumatologist said it would all be fine, even after just having an infusion. I guess I’m not too worried about it anymore, just looking forward to getting it over with. I’d like to put a stop to this awful acid reflux if I can. I miss Italian food. Like, seriously.

Well, that’s all folks. There is a lot of Mario Party in my immediate future. TTFN.

This week #lupus

On Friday I had the MRI on my abdomen/pelvis to check out my adrenals. I didn’t have the gadolinium contrast because they think I might be allergic. I had a rash once after having it for a brain MRI. Getting MRIs seems to give me rashes for some reason, but the hospital would rather err on the side of caution. I still had a rash after this MRI. I had a rash before it, but it was worse when I was finished. This particular scan was extremely loud, and I had to hold my breath for 10-second intervals. I had already been dealing with a migraine when they started the scan. It wasn’t a pleasant experience. The next day I felt like I got a good ass-kicking.

I’m not sure when I’ll get the results of the MRI, but hopefully this week. I’m really hoping for some answers.

I’m starting the Actemra infusions on Tuesday. The process sounds just like Benlysta. I’m anxious to get it going. I’d really like to start feeling better. It will take up to 6 months to notice improvement. I haven’t gotten infusions since changing to my current doctor. His office actually has an infusion center, so it will be nice not to be crammed in a small room with shitty furniture.

I’m having the upper GI endoscopy on Thursday. I’m looking forward to getting it over with. The doctor is looking for eosiniphilic esophagitis, inflammation in my esophagus caused by an allergy, which could be responsible for my acid reflux and trouble swallowing. They will be giving me propofol for sedation and 100mg IV hydrocortisone before the procedure and 50mg after to support my Addison’s disease.

I’ve backed off on the Florinef to a quarter of a tablet. I stopped taking it completely for about 2 days like the nephrologist said, but I felt so tired. My endocrinologist doesn’t think I should stop it completely anyway. My blood pressure numbers are a little better but I am still experiencing all the high blood pressure symptoms, the dizziness, heart palpitations, and shortness of breath. I still can’t eat any salt. I’m still feeling really tired too.

I’ve had to stop taking Duexis (ibuprofen) this week to prepare for the endoscopy. The doctor will be taking tissue samples. Ibuprofen thins your blood and can cause excessive bleeding, so I have to stop taking it for 5 days before the procedure just to be safe. So far, my joints don’t hurt anymore than usual, but I couldn’t sleep last night because of the fevers from the Still’s Disease. I’ve been taking Tylenol more regularly to help the fevers and to ward off pain. So far I haven’t had a major headache yet but I am worried about it. I would guess that most, if not all, my pain is caused by inflammation. Ibuprofen is an anti-inflammatory and Tylenol is just an analgesic, so I don’t know how well it will continue to work throughout the week. When my GI doctor told me I couldn’t take Ibuprofen my heart sank a little. It’s probably the only thing that keeps my symptoms bearable. If I do get a migraine this week I don’t really know what I’m going to do to treat it.

I’m more stressed out than usual. I’m also a lot more tired than usual. I’m hoping once this week is over things will settle down. I’ve been to a lot of appointments in the past 2 months. I’m glad to keep things moving along but the trips are pretty tiring.