Hello, March #lupus #blog

On Monday I had an ENG done. I was pretty worried about it because I knew it can cause migraines and vomiting. An ENG is a test for your inner ear, and also your eyes, to check for causes of vertigo. I get dizzy when I look down for prolonged periods of time. It seems like it’s something that flares, because some weeks are worse than others. I’ve never been a person that got sick from carnival rides. I play video games regularly and have never had a problem with getting dizzy from them. However, I do get dizzy from riding elevators, oddly enough. They’re looking to see if I have any damage from the lupus in my inner ear.

The test can take up to 90 minutes. For the first part, I had to wear headphones that played a clicking sound in each ear pretty loudly while I turned my head to the left and right. I had electrodes on my chest and neck. The next series of tests involved following a red dot on a screen in the dark. I had electrodes on my face around my eyes. I didn’t have dizziness from either of these tests. The technician then had me sit up and helped me to lean back and turn my head quickly. This made the blood rush to my head, but I did not seem to get vertigo from this either. I also had to lie down on one side in the dark, and then switch to my other side, which also did not cause a problem.

So far no vomiting, and no headache.

The last part of the test was a bit more difficult. I still had the electrodes on my face. They had me lie down on my back and they irrigated each ear with cold water, and then warm water for 30 seconds. The first irrigation was the worst. The cold water in my left ear made the room spin. After each irrigation, I had to sit in the dark. I had to hold onto the chair. The last 3 weren’t as bad, and the warm water bothered me less than the cold water. The warm water feels hotter in your ear than it really is. Having water shot into my ear in general was uncomfortable. It made me feel a little panicked. I was glad when it was over.

I did not end up getting a migraine or vomiting from having this test done. I’ve had a sore throat since I did it, but I don’t know if it’s related at all. I’ll get the results when I see my neurologist.

I stress dosed my hydrocortisone to support my Addison’s Disease for this test. I always have a delayed stress reaction after difficult tests that night or the next day. It usually makes me feel shaky and lightheaded.

On Thursday I went to see an Infectious Disease specialist. My rheumatologist referred me to one so they could run some tests to rule out infections like Valley Fever, mosquito-born diseases, and tuberculosis. My rheumatologist is checking these for two reasons, to make sure I don’t have anything that could be causing my current symptoms, and to make sure I’m clear to start a new treatment. Being on other immunosuppressive drugs in the past could have left me more susceptible to these types of infections.

The ID specialist was nice enough. His office was really hot though. My face and my chest blew up with a blotchy red rash. My rashes come up so easily now. I have at least one episode every day. Doctors’ attitudes change when they see my lupus in action like that. It seems like it makes them realize the gravity of my disease activity. Sometimes I feel like some doctors don’t take my lupus very seriously, or they just don’t realize how ill I really am.

Prior to my rash making its appearance, he had talked about a couple vaccines he thought I should have. He mentioned the pneumonia vaccine. I’ve had a flu shot but I’ve never had the pneumonia shot before. I believe the pneumonia vaccine is good for 5 years. I didn’t object to it, I just didn’t realize I was a candidate for it, as it has never been recommended to me before. Being the age that I am, he also mentioned the HPV vaccine, and he seemed surprised that I had not already received that series of vaccines. That has never been recommended to me before either, and I have been going to doctors regularly for quite a while. I am for vaccines, but I am not comfortable with the HPV vaccine. It’s too new, I have lupus, and I have heard nothing but bad things about it. I did a little research online, and a common side effect is fainting.

A COMMON SIDE EFFECT IS FAINTING.

I’m sorry. I’m not doing it. I don’t need to do something to my body that can’t be undone right now. My life is already upside down because of all my health problems. I don’t even have everything diagnosed yet. And sleeping around isn’t a top priority. Its not a risk I can take. I feel like at this point I’ll be lucky if I make it to 30 without catastrophic organ damage, or other irreversible complications from lupus.

Anyway, back to my point. The doctor got real quiet about his vaccine trip when my rash came up. It was a pretty violent rash, too. I think he felt a little bad after that. He was selling it so hard, and kind of judgmental about it too. I’m not going to worry about it right now. I’m gearing myself up for the next treatment plan, whatever it may be.

The ID specialist wrote me a prescription for a bunch of different tests, so on Tuesday I’m going to the hospital to get some blood drawn.

I’m also going to the cardiologist that day. I’m having high blood pressure even though I’m on blood pressure medication. At this point, I can’t even eat crackers without the tiny amount of salt sending my blood pressure through the roof. I’m considering asking them to do an ultrasound on my heart again to make sure there isn’t lupus activity there, and I also might ask for a referral to a nephrologist to make sure there isn’t a problem with my kidneys causing the high blood pressure. My urine always tests normal but I think it would be good to get some other tests run. I am concerned that I’ve had this sudden high blood pressure for a few years and no one is looking into why it’s happening. My blood pressure used to be great. It’s effecting what I eat and how active I am able to be, and it feels horrible. It certainly isn’t helping the headaches.

This week I am also going to see a dermatologist about my rashes. I might have to get some biopsies done. Then my rheumatologist will use all this information from the other specialists to figure out what kind of disease activity is going on so he can pick the most effective treatment for me.

When I talk to my neurologist about my ENG I am also going to mention that I am getting headaches when I chew, and I am also having pain in my face and nasal cavity that seems to go with my headaches, but does not feel allergy related in any way. I am also going to mention that while the imitrex is sometimes helpful for migraines, it makes my blood pressure go up and causes me to be dizzy.

My aunt flew in from Boston this week, and I saw her on Friday. I was pretty worried about spending time with someone who had just spent time in airports. I just had to trust that she was good at avoiding germs. There are a lot of things that I have to spend a decent amount of energy worrying about that other people don’t think twice about. It’s exhausting. Last time I had a flu I spent 5 days in the hospital, and my white blood cell count almost bottomed out. I didn’t even know I had lupus yet. It makes me worry about what would happen now, since I would consider my disease to be even more active now.

My current symptom check-list looks like this:
-Hot red itchy rashes
-pain, rashes, swelling and loss of range of motion in joints, particularly hands, knees, and neck
-constant heart burn
-high blood pressure, even with medication
-heart palpitations with no cause
-required bland diet
-chronic migraines
-headaches and jaw pain from chewing
-nasal and facial pain with some headaches
-dizziness when I look down
-chronic constipation
-burning when urinating with no infection
-eyes are light sensitive
-skin is sun sensitive
-drinking twice the daily recommended amount of water
-lower back pain
-muscle weakness, pain, and tremors
-numbness, cold, and discoloration in feet
-hair loss
-loss of sleep, usually from pain or heart burn (4am)
-dry irritated eyes, can’t wear contacts
-trouble with concentration, memory, and confusion
-trouble swallowing

That’s the thing about lupus. No two cases are alike. My rheumatologist has to make sure I don’t have other disease activity besides the lupus. I am hopeful that I will be on a new treatment in the next couple months. I’m not expecting a miracle, but a shorter list would be nice.

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