What’s next #lupus

I went to the rheumatologist Tuesday. I’m stopping the methotrexate injections since it’s not helping anything. I told the doctor that I didn’t feel better, that I felt like it just put my fevers on a different schedule. I’m still getting the sunburn-like rashes. I am still getting the swelling and itchy rashes over my joints when they hurt. My migraines are still bad. I have a whole array of other things that I haven’t even addressed yet because the list is so goddamn long.

He wants me to go see dermatologist for the rashes to get some tests run. He said it will help to paint a better picture of the autoimmune activity that is going on. He also wants me to see an infectious disease specialist to rule out any kind of infection that could be causing symptoms.

He took some blood and urine to make sure the methotrexate didn’t cause me any problems.

I know he is making the right move. Methotrexate is basically poison, and I don’t want to be on a medicine like that if it’s not helping anything. I know he wants to dig a little deeper before he puts me on something else. He isn’t just going to blindly put me on some random medicine to see if it helps.

I was on methotrexate pills in the Fall of 2012. It didn’t help me then, either.

I found myself worrying about Tuesday’s visit at 4am yesterday. I guess I’m just tired of the “now what” feeling. I’ve had some heavy-duty lupus treatments, (methotrexate, Benlysta, Rituxan) and none of them worked. I’ve already been told that I have rheumatoid arthritis activity. I feel like I’m bracing myself for another diagnosis, and I’m hoping it’s something that has a treatment.

Whatever is going on is effecting everything. My hair is thin. My skin is irritated, and breaks out in burning rashes. My periods are short and heavy. It’s painful to use tampons. Some days it burns when I pee. I drink water constantly so that it doesn’t burn when I pee, and I pee 4-5 times in the night. My eyes are so dry and irritated I can’t wear contacts or makeup anymore. My heartburn gets so bad it makes my gums hurt. It gives me a bad taste in my mouth. When I lie down at night everything in my stomach wanders back up my esophagus. Sometimes the esophageal irritation is so bad I can’t wear a bra. My heart pounds for no reason. My blood pressure goes up for no reason. I get vertigo when I look down. My lymph nodes in my armpits swell and make my boobs sore. My nose is constantly congested. I can’t be in the sun without it making me feel sick. I’m tired, my muscles feel too weak, and my joints lock up when I try to do anything. My headaches are still the boss and my brain fog still embarrasses me in public. When I laugh I get asthma. When I cry I get migraines. I get headaches from chewing, bending over, sitting still, and eating bananas. My diet is so bland I started having dreams about food I haven’t been able to eat. Some of my pills give me heart burn, some of them make me constipated, and some of them make me nauseated. Some of them keep me awake, and some of them make me sleepy. I can’t stop taking any of them. I wake up in the middle of the night because I suddenly get itchy everywhere for no reason and it keeps me awake. I wake up in pain. I wake up with migraines. I wake up because I can’t breath through my nose. My toes are cold and numb most of the time. My hands are cold and numb sometimes, and hot and achy sometimes. I get low blood sugar. I spike a fever when I eat dinner, and I sweat when I’m cold. My knees hurt when I ride in the car too long, and my elbows hurt when I try to tie up my hair. I’m lonely but I’m afraid to be social.

Everything is an uphill battle.

Even though I am stopping the methotrexate, I still had this week’s injection because I did it before my doctor decided to discontinue it. So I’m still enjoying that nauseated, tired, headachey methotrexate hangover.

Colds and stuff #Lupus

I have a cold. A shitty chest cold. I actually don’t catch a lot of colds, probably because I limit my time spent in public. And when I am in public, I’m a Purell whore.

Anyway, I feel like crap. I’m sick, I did my methotrexate on Tuesday, and “Aunt Flow” came to visit, so it’s been a hard week. Plus the weather has been hot, dry, and windy, which makes me feel horrible by itself. My headaches have been ridiculous. I had one that woke me up at 4am the other day.

I spoke to my neurologist briefly last week and he is ordering an electronystagmogram (ENG) because I keep getting dizzy/lightheaded when I look down. It’s been pretty troublesome lately. I was at this cool records store looking through music a couple weeks ago and I was really lightheaded after looking down all that time. It’s been interfering with my ability to use the computer or work on any sort of art or reading. It’s really frustrating. My neurologist ordered the test to make sure there isn’t some kind of inner-ear problem from all my autoimmune activity.

On the bright side, my mom was able to transfer my methotrexate prescription from a Los Angeles pharmacy to one in my town, and they gave me a giant vial, so it won’t have to be refilled for a while. *excitement*

I’m still breaking out in those horrible rheumatic “sun burn” rashes over my joints and stuff. They itch and burn and come on with no rhyme or reason.

I’ll see my rheumatologist on the 17th, and we will probably decide what drug to use with the methotrexate then.

In the mean time I’ll try not to cough my way into a migraine.

Happy Valentine’s