It has been a long time since I’ve taken the time to update the Lupies site, but that is about to change. I am going to do my best to keep things moving forward in my pursuit to educate people about Lupus and all its challenges. Stay tuned for more exciting posts in the Lupus world! Thanks for your patience.
I am patiently waiting for my USB hand-warmers to arrive so that I can type and be toasty (literally) at the same time. How cute and fobbie (fresh of the boat-ie) are these? Such a great gift idea for your favorite Raynaud’s suffering friend or family member.
Team Nerdgirl is going strong on the ranking of teams for the Lupus Walk in San Francisco on October 21st.
Don’t miss your chance to hang out with us and walk in the cold San Francisco morning around Golden Gate Park!
I apologize in advance that the sign up site is so horrendous. It is out of my control.
I have found that it is pretty rare for men to be diagnosed with lupus, but there are some out there. Probably more than I even recognize. One of the most famous lupies is Nick Cannon – husband to Mariah Carey and host of America’s Got Talent. Not that I watch that show or even knew who Nick was until now (doh!).
He talks about how his doctors told him to slow it down.
“My doctor was saying that my work is going to kill me – and he’s not joking,” he said. “I think part of the reason why my health did kind of deteriorate was because I wasn’t resting a lot and I was doing too much. I was overworking myself, working out too much.”
From what it appears from his busy schedule, he still hasn’t fully gotten the message.
Yeah. I know you were thinking Spinal Tap the band as opposed to spinal tap the thing someone stuck into my spine this morning. One of them is funny. One of them is not that funny, but not that bad.
I ventured into the neurology clinic this morning for my procedure. This was my reward for having my white blood cells increase. In the clinical environment, we like to refer to spinal taps as lumbar punctures or LPs if you are really well versed.
The procedure goes a little bit like this.
- Get bloodwork done to make sure you aren’t going to bleed out.
- Lie down on the bed facing the wall and curl up into a ball with your knees as far in as possible.
- Nurse starts to feel your hips and spine for the correct insertion point.
- Nurse finds and marks insertion point.
- Nurse wipes area down with betadine – that horribly staining stuff.
- Nurse inserts needed with lidocaine to numb the top area. This part pinches and the lidocaine burns.
- Nurse inserts another needed further in with lidocaine. This also burns and you feel some pressure.
- Nurse finally goes for it with the needle into your spine. You feel slight pressure, but it is more scary than painful.
- Nurse measures your spinal fluid pressure.Increased CSF pressure can indicate congestive heart failure, cerebral edema, subarachnoid hemorrhage, hypo-osmolality resulting from hemodialysis, meningeal inflammation, purulent meningitis or tuberculous meningitis, hydrocephalus, or pseudotumor cerebri.Decreased CSF pressure can indicate complete subarachnoid blockage, leakage of spinal fluid, severe dehydration, hyperosmolality, or circulatory collapse. Significant changes in pressure during the procedure can indicate tumors or spinal blockage resulting in a large pool of CSF, or hydrocephalus associated with large volumes of CSF
- If all is good, nurse starts to collect spinal fluid.In my case, this took about 15 minutes because they were also banking some of my fluid into a bank for research.
- When collection is done, nurse pulls needle and cleans you up. You get a little bandage that you are to remove in 24 hours. Voila. Done!
The risks of doing a lumbar puncture are post spinal headache with naseau. I was told that this only happens about 5% of the time and mainly with the hospital punctures. The reason that they happen more in hospital as opposed to clinic is that the needles that they use in hospital are a lot bigger than what they would use in an MS clinic like I go to. This is largely in part because doctors in hospitals don’t perform lumbar punctures all the time, so they need bigger needles to hit the spot. The bigger needles perforate a sheath that the smaller needles simply push apart. This results in some spinal fluid leaking out and giving you a headache. Scary, right?!?
There are different tests that you can take to diagnose lupus and also monitor lupus activity. This is the first in a series of the lab tests that I typically have to take with an explanation of what the results might mean. Keep in mind that I am clearly no doctor and most of this information has been scraped from the internet. The lab results will be from my personal bloodwork or other tests.
The anti-double-stranded DNA antibody (anti-dsDNA) is a specific type of ANA antibody found in about 30% of people with systemic lupus. Less than 1% of healthy individuals have this antibody, making it helpful in confirming a diagnosis of systemic lupus. [The absence of anti-dsDNA, however, does not exclude a diagnosis of lupus.] The presence of anti-dsDNA antibodies often suggests more serious lupus, such as lupus nephritis (kidney lupus). When the disease is active, especially in the kidneys, high amounts of anti-DNA antibodies are usually present. However, the anti-dsDNA test cannot be used to monitor lupus activity, because anti-dsDNA can be present without any clinical activity. Three tests are currently used to detect anti-dsDNA antibodies, namely enzyme-linked immunosorbent assay (ELISA), the Crithidia luciliae immunofluorescence test, and a test called radioimmunoassay.
Standard range: <30 IU/mL
NEGATIVE: <30 IU/mL
EQUIVOCAL: 30-75 IU/mL
POSITIVE: >75 IU/mL
Reading my results
I started seeing to my rheumatologist in April of 2011 so these are the only labs that we have to chart. You can see that there is a pretty shocking increase over time with it peaking around late January 2012. This period coincides with a period of a great deal of stress for me. I began taking prednisone then and you can see the decrease back to a near “normal” state for me.
I would say that these labs are slightly off because they are missing tests from my hospital stay in June when I was in a life-threatening state. They only show in the middle of July when I was already treated and on a heavy dose of steroids. My guess is if I track down those June labs they would be spiking near or above the January reading.
Five years ago Shannon Boxx, a midfielder on the U.S. women’s soccer team, was diagnosed with lupus. After hiding her diagnosis, Shannon decided to come out of the lupus closet last year so she could help educate others suffering from our fate.
“I didn’t want to be different. You keep those things quiet,” Boxx said. But “I just realized it was not working. It’s worth talking about it; giving my voice and using my voice to bring more attention to it.
On Saturday, Boxx gave more than her voice, organizing a team of family, fans and friends such as Abby Wambach to join some 5,000 others on a three-mile fundraising walk around Exposition Park. Shannon’s group raised more than $5,500 for the Lupus Foundation of America.
“It feels good to know that you’re not alone,” Boxx said. “This walk is all about the unity of the community.”
Dearest White Blood Cells,
Oh you pesky little buggers that keep me alive and free from nasty infections. I never really thought of you much and that was wrong of me. A terrible oversight that makes my heart ache and my mind tense from the thought of what life could be without you. Alas, at this time, I am running low on you guys and I realize the enormity of my misplaced affections.
I miss you so much that I shall stay indoors in the safety and comfort of my own home in the hopes that you will return to my body and protect me from the evils of this world. I promise that I will not enter another man’s cove and mistakenly touch his doorhandle. I assure you that I will keep my lair clear of friends and foe (especially Scott Foe) that may bring harm to my Heavenly temple.
I shall wait here patiently for you to return. I wish you safe voyage and a pledge a large celebration upon your arrival home to my body.
Yours lovingly and forever,