adrenals, MRI #lupus

I went to see the nephrologist on Friday. I was her last appointment so we spent a lot of time talking. The office was really hot, so I spent a lot of time sweating too. She took a complete history. I told her about my high blood pressure and my extreme sensitivity to salt. She thought it was odd that I have such a huge negative reaction to it. I didn’t used to. In fact, Addison’s Disease requires a high salt diet. She also thought it was odd that even though my blood pressure isn’t dangerously high by clinical standards, that I feel so horrible from it. It makes me really dizzy, and causes shortness of breath, heart palpitations, and chest pain. Sometimes I even get irritated or confused. She thought maybe with the Addison’s disease that my body was just accustomed to having low blood pressure most of my life, and anything elevated would feel extremely high to me. She looked at my Doppler ultrasound and the blood flow and size of my kidneys looked normal. My bladder also looked normal (that’s another story). There was no evidence of narrowing arteries.

She seemed really interested in investigating why I’m so sensitive to salt, and why my blood pressure makes me so uncomfortable. She talked about the hydrocortisone I take for my Addison’s, and how anyone on long term steroids could potentially develop high blood pressure. That didn’t really make sense to me since it’s not prednisone, and since I’m taking a dose just to replace the cortisol that my adrenals should be making. I mentioned to her that my neurologist had wondered why no one investigated a pheochromocytoma before, which is an adrenal tumor (90% are noncancerous) that causes too much production of noradrenaline and adrenaline. Since my headaches are still pretty bad and are seemingly influenced by my blood pressure, it would make sense to look for a hormonal cause. She seemed to agree that we should look for it.

She gave me jugs to collect a 24-hour urine sample. I’ve done it before. Nothing makes you feel sexy like keeping your pee in the fridge. I was originally going to do it the night before my first infusion so we wouldn’t have to make a separate trip to LA just for a wee wee test. After thinking about it, and after talking to my rheumatologist, we decided together that it was necessary to investigate my adrenals before I start my first Actemra infusion. We are working on scheduling an MRI, hopefully for this week. The nephrologist doesn’t think there is any reason I should be taking florinef anymore, and to check with my endocrinologist about it. There was a time when I needed florinef, but at this point it may be adding to the problem. I don’t know why when my adrenals produce little/no aldosterone that I would suddenly not need medication for it anymore. It’s all been strange and miserable and I hope they sort it out.

Treatment plan #lupus #stillsdisease

This morning my rheumatologist called to let me know that I’m all clear to start a new treatment. I’m going to be doing Actemra infusions for Still’s Disease. It’s another biologic, and the IV infusions will be once a month, much like the Benlysta I was getting last year. Actemra can also be injected at home but he said that it’s not as effective, and I could potentially see results sooner with the infusions. The side effects sound similar to Benlysta, which wasn’t bad at all. It takes 3-6 months to see improvement. I’ll be starting them sometime next month.

We are trying the Actemra first because the Kineret is a daily injection that can be painful for some people. I don’t mind getting infusions. I’ll be glad to finally be on a treatment plan.

I talked to my Gastroenterologist today. One of my blood tests said something about “borderline Salmonella” and he explained that it was just the existence of the antibody, not the disease. That means at one point I had Salmonella but I don’t have it now. I’ve moved the endoscopy to the middle of April. I have to work around the migraines I get from my period, because I’m not supposed to take ibuprofen for 5 days prior. It’s going to be really hard, since all of my pain is caused by severe inflammation, including my headaches. I’ll be glad to get the whole thing over with.

I had the ultrasound done on my kidneys on Friday. They’re checking the blood flow. The technician said that everything looked good, but I’ll get a more complete assessment from the doctor on Friday. They’re making sure my high blood pressure isn’t caused by narrowing arteries around my kidneys. I’m hoping the nephrologist can point me in the right direction for my high blood pressure. I had to fast for 6 hours before the ultrasound. I was alright with not eating, but drinking minimal amounts of water in that time set me back a few days. For some reason it made me really tired. I felt like I spent Sunday recovering from it. The same thing happened to me when I had the spinal tap. My stress reaction to procedures is usually delayed by 2 days. I stress dosed my hydrocortisone and I felt better after.

I have a migraine right now and one of my hands is feverish from the arthritis. Typical night for me.

Exercise. #lupus

“Do you exercise?”

Doctors ask me this a lot. They don’t seem to reserve their judgement, either.

Well, it depends on what you consider exercise. Something that’s not necessarily exercise for someone else could be considered exercise for me. Do I bust my balls at the gym? No. Do I run at the ass-crack of dawn every morning? No. Do I dress like Lance Armstrong and ride my bike in the middle of a busy street like an asshole? No. Do I carry in groceries? Yeah, sometimes. Do I walk the dog? Yeah, once in a while. Do I take the stairs instead of the elevator? When I’m feeling up to it.

I guess I don’t know how to answer their question. Do I do something that’s considered exercise by societal standards? Am I in an exercise class? Does what I do have a fancy exercisey name? Does what I do require a fancy exercisey machine?

Don’t take what I am saying the wrong way. I don’t dislike exercise. I come from a pretty athletic family. My mom has been teaching Jazzercise and dance aerobics my whole life, and I was able to learn proper fitness technique at a young age. My older brother was on the track and cross-country teams in high school, and has extensive knowledge in sports medicine. My younger brother just started a new exercise plan at the park and also hikes regularly, and he played baseball for the Y.

I myself use to be on the track team before the lupus days. The 400m and high jump were my main events. I wanted to do what my brother did, run for the high school team and do 5ks on the side. I didn’t get to do that, though. My freshman year of high school I had to get a PE waiver because I was sick, and so I had an extra academic class in place of PE, which meant extra homework. Oh boy.

It’s not as if I don’t try. There are exercise activities I’d really like to enjoy regularly, but I’m just in so much pain all the time that I can’t. I’ve tried tai-chi, and yoga, both which I liked well enough, but I was so sore for the next three days I couldn’t move. The pain affected my sleep. I seem to have this soreness from exercise that is exacerbated by Lupus inflammation.

I also have limits with my range of motion, and high blood pressure. Because of the damaged blood vessels in my brain, I can’t do anything that requires bending over without getting a migraine, especially during exercise that raises blood pressure. Sometimes doing anything even remotely exertional gives me a headache because it makes my blood pressure so high. When I already have a migraine, it’s so sensitive to my blood pressure that I can’t get up to go to the bathroom without making the throbbing worse.

The pain and soreness I get from exercising makes it even harder to do daily activities. I never seem to “get used” to exercising. The amount of inflammation people with lupus experience can actually result in significant muscle weakness.

I’ve explained all this to the doctors yet they still act like part of my problem with how sick I am is that I don’t exercise. Or that I don’t do what they consider exercise, rather.

So if anyone can explain to me how I am supposed to exercise with high blood pressure, a fever, daily migraines, and a disease that causes its own inflammation, and makes existing inflammation even worse, I’m all ears.

In the mean time I’ll keep exercising my patience.

Photo Blog–Rashes #lupus

I went to the Dermatologist on Thursday. She said that my rashes are consistent with Lupus but that there wasn’t anything she could biopsy, since they come and go relatively quickly (as opposed to scabbing, scarring, or turning into sores). My rashes have a life of their own all the time. They’re always red. Sometimes they’re blotchy. They’re never raised, but are sometimes accompanied by joint swelling. Sometimes they itch, sometimes they burn, sometimes they sting, sometimes they tingle, and sometimes they feel like nothing at all. Sometimes they’re over joints, sometimes not. Sometimes they come on when I’m stressed, or when it’s hot. Sometimes they come on at the same time as a migraine. Sometimes they seem to appear from lying down. Sometimes they come on when I feel I’ve over-exerted myself. Sometimes they come on for no reason at all.

Here’s one after standing. Pain went with it.


Here’s one from typing. It happens for no reason, too. It itches, and it’s hot.


I get this one a lot for no reason and it feels like a sun burn.


This one stings like a chemical burn. I had it during my Rituxan too and thought it was a side effect, but I’ve been getting it again recently. It comes on after I shower for some reason.


This is one I get from crying, being in a hot room, arguing, feeling embarrassed, or doing something that makes me feel nervous.


A mottled rash I’ve gotten since I was a kid –“livedo reticularis”– Happens when I’m cold or nervous, or for no reason.


Raynaud’s feet.


And your typical Lupus “butterfly” rash. It usually feels hot, and sometimes it’s itchy. It comes on when I’m stressed, sick, too hot, menstrual, over-exerted, in pain, and for no reason. I have some form of this rash all the time now.


Yesterday and tomorrow. #lupus #blog

I was at the hospital again yesterday to get the ID testing done and to see my cardiologist. I talked to my cardiologist about my problems with high blood pressure despite being on medication. He wants me to increase my dose of norvasc to 7.5mg from 5mg. I also brought up that I’d like to know why I have high blood pressure in the first place, and I asked him if he thought it was a good idea to see a nephrologist. He seemed to agree and he also scheduled an ultrasound of my kidneys before I see the nephrologist so I have some information for her ahead of time. I’ll be getting the ultrasound on the 31st.

Tomorrow I’m going to see the dermatologist to see what she can tell me about my rashes. I’m bringing in some pictures, but I will probably have a rash when I get there. It comes on pretty easily now, and it seems to surprise some doctors.

Next Tuesday is my appointment with rheumatology, so I’m hoping by then we will have a couple things figured out, or at least be headed in the right direction. We’ll see. It’s a long process, unfortunately.

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.


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.