A little of April and May #lupus

I know I am overdue for a blog. I don’t really remember where I left off last time. I’ve been to a new cardiologist and I had an ultrasound to see if there was any inflammation around my heart causing me chest pain and shortness of breath. I have yet to know the results of that test because the doctor cancelled my appointment since she will not be in town.

The cardiologist did mention that I could also have a problem with my diaphragm. I’m starting to believe that that is my whole problem. I notice now when my heart burn and gastritis are bad, so are my chest pains and shortness of breath. My breathing trouble at night gets worse when my stomach gets worse. Nothing seems to stay down in my stomach anymore and I’m clearing my throat all day long from the acid reflux.

I started taking Carafate about 5 weeks ago in hopes of healing the gastritis, and so far I don’t feel any better. I still have to eat right before bed and eat in the middle of the night or early morning to get the grinding pain to stop. My stomach grinds even when I just drink water. I’m not sleeping very well. I’m sleeping propped up which has been really hard on my back since I am a side-sleeper. I feel like I can’t breathe when I sit. I feel really full when I drink water. I’m miserable with this problem, to be honest.

My GI wanted me to see a nutritionist to get ideas for meals, but I honestly don’t know what they would tell me to do that I’m not already doing. I can’t possibly eliminate anything else, and everything I have eliminated has been for good reason so there isn’t any way I could put it back into my diet. I have made an effort to still try to be as nutritionally sound as possible.

I’m going back to the GI soon to talk about the carafate and my diaphragm.

I went to see a neuropsychologist to get some help with my brain fog. It’s really bad, so bad that I don’t know how I will ever be a functioning adult if I don’t get it sorted out. I had an MRI on the 10th just to check up on my brain and make sure I don’t have lesions and stuff. The doctor wants me to do some testing for my brain fog but they didn’t have an appointment for me until the end of summer so I’ll just be waiting til then.

I’m still taking the Humira shots twice a month. They are still helping some of my lower GI tract inflammation and also some of my muscle pain seems to be better. I would be hard pressed to say it isn’t helping some things. I am still disappointed that I feel so awful all the time, but I am hoping if I can get my GERD/hernia and my brain fog sorted out, I might not feel so terrible. Those 2 problems are really bothersome and could possibly be overshadowing any other relief I might be getting from the Humira.

I’m having a bad time with vertigo. I’m dizzy just from looking down slightly at my computer screen. I noticed my vision seems a bit weaker lately, not sure if it’s just time for an adjustment in prescription or if it means anything. I do have an astigmatism for which I do not wear corrective contact lenses. I’ve always been fine without torics. But lately it bothers me when I wear my glasses too and those do correct my astigmatism. I tried my toric samples the other day and my vision didn’t seem to improve. It’s not a big deal, just an annoyance. Maybe my vision is blurry because I don’t sleep much. Who knows.

Some of you noticed that I haven’t written a blog in a while. I truly appreciate everyone that follows along with me. I have someone in my life that is harassing me, especially on the internet, and I have continued to write knowing that they read it and that they may decide to bother me more, and that isn’t going to stop me from doing what I feel is important for people who like to read my blog and for myself. I considered dropping out of sight and closing down my blog and making an attempt to write somewhere else anonymously, but I don’t want to give anyone that kind of power over me, and I don’t want to abandon people who have been so supportive in the last 4 years. I’ve recently had a change of attitude over the whole situation and now find it laughable and quite pathetic.

Cheers to that.

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.