Friday, November 30, 2012

Acupunctured and Hair Care

I was acupunctured yesterday. I haven't had a headache today which is wonderful! I feel a bit less stiff in my hands. Only one problem... I managed to pick a deceptive chair. While it looked comfortable enough to sit in, there was not a good way to rest my head. I have a kink on the left side of my neck.

I also did some more research on the Biotin pills. I don't think they come in 5000 mg. But I have a sense of calmness about the whole thing. It's probably because I haven't washed my hair for a few days so I haven't had to pick the hair off my hands. Does anyone else with SLE do that? I started doing this when my hair was long and falling out. I would pull it from my hands and put it on the walls of the shower. I was afraid the length and the number of strands would clog the drain. Not to mention I somehow feel it's less gross to pull hair from my hands than it is to collect it at the drain.

If you're new to Lupus and this sounds scary just remember everybody's Lupus is different. What happens for you might not happen to me and vice versa. Check with your doctors.

Wednesday, November 28, 2012


It's important for me to try and be thankful in the midst of a flare up. If I let Lupus get the best of me, if I start my own pity party (as I did earlier this week) nobody wins. Sometimes my self-pitying will reach a point that I can feel the tide of depression coming on. If I don't get up and out of the water, I end up drowning in a sea of my own pity.

So today I am thankful for what I do have (especially for basic & easily forgotten things):
An amazing support system (wonderful family and friends)
Health insurance
Clothing (otherwise I'd be mighty cold)
Work (I always seem to make just enough money for food and gas)
My five senses
Visual Art

Today marks the 22nd day that I've been taking Biotin. My rheumatologist recommended I take it when she saw how my hair was thinning. She said to take anywhere between 5 or 7.5 grams... or 5000 or 7500 mg. She said within a month my hair will stop falling out and within two months it should start to grow back. My aforementioned pity party took place after a shower when I realized the biotin wasn't making any difference... earlier in the week instead of taking one pill, I started to take two. Since the rheumatology appointment I have added a thin spot bringing the total to three (that I can see). The vanities and insecurities of a girl in her early twenties (second only to girls between the ages of 12-19) bubbled to the surface.

A few minutes ago I was filling out medical forms for a weeklong return trip to Mexico and I realized, I haven't been taking 10 mg of Biotin (Biotin is over-the-counter so I selected it myself) I've been taking 10 mcg of Biotin... that's .2% of the amount my doctor prescribed. So... maybe Biotin will work after all.

(More about Mexico in the next post)

Monday, November 26, 2012


Today is one of the significantly less awesome days of Lupus. I've been getting tension headaches since July. The base of my neck is also in pain. I imagine this is how Scarlett O'Hara felt when Rhett Butler tried to crush Ashley Wilkes out of her mind.

So in addition to seeing my primary doctor tomorrow I'm going to see an acupuncturist on Thursday. There's a place a few miles away that does acupuncture in a community setting which allows them to charge less (vital selling point for a college student).

In case you haven't guessed, I'm having a flare up. My hair is falling out (I was born with a very thick head of hair so right now I have significantly thinner spots instead of bald patches), the aforementioned skull crushing, multiple infections (some of which are hair follicle related i.e. ingrown and sty), my sinuses are creaking, and stiff joints. Right now a comfortable position doesn't really exist. For now I'm going to keep resting and trying to do the work that needs to get work done so I can graduate.

Saturday, November 24, 2012

Have you been diagnosed with lupus?

Have you been diagnosed with lupus? Congratulations! No, seriously, I mean it. Congratulations. Getting diagnosed is a huge step. I was misdiagnosed for six years. Lupus can be really tricky. I had been tested for it on and off over the years but the blood work never amounted to lupus. So for six years I was told I had JRA (Juvenile Rheumatoid Arthritis), Chronic Fatigue and Pain Syndrome, Chronic Migraines...

It started at age fifteen. I was getting terrible headaches and would occasionally lose my vision for about 30 seconds at a time. I wasn't allowed to participate in gym (which made me so sad... not true) because my episodes of temporary blindness made me a liability (freshmen gym is swimming). Since I was having these weird episodes my mom decided that I should see an ophthalmologist instead of an optometrist to get a new glasses prescription. After a few minutes with the ophthalmologist, he told me I had something called Pseudotumor Cerebri* (latin for false tumor of the brain) and needed to go to the ER. He said I would be there for a while (at least overnight) so it might be wise to stop home and grab a change of clothes. 

That was the day I received the first of six spinal taps over a 4 year period to relieve the fluid pressure. The next year I added Dr. Charles Spencer**, rheumatologist, to my list of doctors (I was seeing a neurologist and the ophthalmologist). Spencer was also K's doctor, my cousin with lupus. so we gave him permission to share relevant medical information with the other. Although the cause of lupus is unknown, it is believed genetics is a factor and K exhibited more symptoms fairly early on and was therefore diagnosed before I was. 

*Pseudotumor cerebri (also known as idiopathic intracranial hypertension) is characterized by increased pressure inside the skull. Intracranial means inside the skull and hypertension means high fluid pressure. Basically, the pressure of the fluid that surrounds the brain (cerebrospinal fluid or CSF) is too high. Elevated CSF pressure produces severe headache and often visual difficulties, which, if left untreated can result in loss of vision or blindness. ( 

**(Doctor Charles Spencer (pediatric rheumatologist) is hands down my favorite doctor, which as any person with lupus will tell you means quite a bit. Over the years I've had 4 primary care doctors, 3 ophthalmologists, 3 rheumatologists, 2 neurologists, and 1 neuro-ophthalmologist.

Intentions for Adventures in Lupus

Intentions for Adventures in Lupus
•   inform people about the disease
•   provide my experiences in the hopes that it doesn't seem like the worst thing ever
This first post will probably be the least "fun" of those to follow. 
So what is lupus? 

"Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints and/or organs inside the body). Normally our immune system produces proteins called antibodies that protect the body from foreign substances, like bacteria and viruses. With lupus, your immune system cannot tell the difference between these foreign invaders and your body's healthy tissues and creates autoantibodies ("auto" means "self") to attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can be mild or serious but should always be treated by a doctor. With good medical care, most people with lupus can lead a full life." ( 

My brand of lupus is SLE: Systemic lupus erythematosus. This is what most lay people (me and other non-medical folks) mean when they say lupus. Everyone is different and so is pretty much every case of lupus. My cousin and I both have it and off the top of my head the only overlap is joint pain. 
My main symptoms are : extreme fatigue (left to my own devices I could probably sleep more than 12 hours a day... everyday), headaches, joint pain/swelling, hair loss, fingers occasionally get pale or blue when I'm cold, and I get sick pretty easily (the few white blood cells that I do have are too busy attacking me to do their job). I also have PTC but we'll get to that later. 
If you've just been diagnosed or you know someone who has, take a deep breath. Life is certainly more challenging with lupus but it is not the worst thing in the entire world*.

*Remember every person is different. My last statement is in no way attempting to minimize what others with lupus have gone through. Having lupus isn't ideal but it is not fatal either.