This week’s #lupus frustrations

There are a few topics I’ve been meaning to write about, but honestly, my short-term memory has been terrible lately. I’ll think about something I want to write and when I go to sit down and work on it, I can’t for the life of me remember what it was I wanted to write about. I’m not sure what’s causing my memory to just void everything. I’ve been stressed out a lot lately, my Benlysta is wearing off and I’m due for another treatment, and I was in PMS mode last week (not bitchy, just achy) All in all I feel like I’m just not taking in information, and you can’t remember what never went into your brain in the first place.
I’m having a terrible time focusing. Even right now I feel like I have to take breaks from writing every couple minutes because my brain is all over the place. I haven’t been able to read and I’m even having a hard time watching movies because I can’t focus. There are a lot of activities I’d like to do throughout the day that I just can’t do because I can’t focus. It’s really an awful feeling. No doctor has really stepped up to help my focus issues. It always seems to be something that isn’t important. But it’s something I struggle with all the time, and have been struggling with since about 6th grade. It’s getting old.
I went to the neurologist to talk to him about my ‘neurological’ symptoms. I feel like he brushed most of what I said aside, and was ready to blame everything on my lupus. That .always makes me irritated, because if I have some other type of disease activity going on, I want them to be looking for it. It’s easy to just assume it’s the lupus. I’d rather be on the safe side than the sorry side. I never liked this particular doctor anyway, I just went because my rheumatologist told me to.
He’s going to be doing an EMG Nerve Conduction Study to see if I have peripheral neuropathy from the lupus. I’m not looking forward to the test, I know it entails needles and electrical currents. It won’t be the worst test I’ve ever had done but I’d really rather get it over with. This doctor likes to schedule everything 2 weeks out for some reason. I don’t like waiting. I’m an impatient patient. I want it done and I want to know the results as soon as possible.
He told me I should go see a GI for my digestive motility issues. I’m not in a hurry to do that. If my EMG shows nerve damage, than there’s no doubt I have nerve damage that involves my stomach too. My stomach issues come and go. Some days I can eat a whole plate of food and some days I can barely swallow. I can just imagine going in to the GI and having a bunch of unpleasant tests done and have them tell me everything is normal just because my stomach decided to work that day. Nope, not doing it.
If I do have nerve damage, the rheumatologist will probably switch me from the Benlysta to something else. I used to be afraid of that idea but the Benlysta isn’t helping me. I feel awful. I wake up every morning feeling like I got beat up the day before.
With the Chiari Malformation stuff, I’ve decided that the specialist who deemed it ‘not chiari’ doesn’t know what he’s talking about. I’m going to get my records and mail them in to other specialists and see if they’ll take a look. My cerebellum is herniated 6mm and my headaches are unbearable. You do the math.
I probably sound like I’m writing from a place of frustration, because I am. I am absolutely frustrated. I feel like I’m not getting anywhere. I thought maybe this was a feeling I would be able to shake in a short time but it’s not going away. The doctors taking their sweet time isn’t helping either. What might be a month to them is an eternity to me. A month of sitting on the couch waiting to feel better that I’m not going to get back. I’m tired of the beating around the bush, and the maybe’s, and the tests, and the we’ll see’s. I’m tired of the ‘I don’t know why you feel awful’ and the ‘you should be feeling better’ and the ‘well it must be the other disease’ and the ‘your other doctor should treat you for that.’ I’m tired of tests coming up inconclusive. I’m tired of doctors telling me I don’t have something and then not trying to help me figure out whatever it is I do have. I’m tired of being pushed around by doctors like people who work at home depot “Nope that’s not my department.” Some days I think I’d just stay in bed if it didn’t hurt too much to lie there.

Congrats Red Sox. Don’t know what I’d do without you.



  1. Addisons’ has memory issues if not in good control, have they checked your labs? Go get neuropsychological testing and see a memory doctor. I take a medication called Donezpil, a memory enhancer, and it does help with short term memory. If you have a decent phone, you can talk into it if you download an app for anything you think of that will quickly go away. Neuropathy sucks, I have severe from chemo. What you describe from your stomach sounds like gastroparesis. There are meds for this but it needs to be ruled out or diagnosed. Keep fighting about the Chiari’s–if just one thing could be gone, you would be in a better position. So sorry you deal with all of this, getting the short end of the genetic stick sucks, as I can relate.

  2. CJ, you are not alone. Many of us with lupus have been through times like what you are experiencing. It is especially difficult when the brain you need to cope is malfunctioning, too. I think finding the right specialist is everything. You have to be able to trust them for the relationship to work. Hang in there! LA

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