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,
So it is Saturday following the chemo that I had on Monday.
And my perspective on chemo has changed radically from the afternoon that I wrote that post after having spent 3 days in the hospital following my infusion.
I arrived home around 5:30 in the evening and felt completely fine. My lovely friend and cultural anchor, Chris, came over to help celebrate the last of the infusions. We were having a great time watching our trashy TV, eating our usual Monday night fare from AG Ferrari. Then all of a sudden pain struck. At first I thought that I had eaten too much. But it quickly became apparent that this was not the case. My flanks began to ache. The onset of the pain went pretty rapidly from uncomfortable to downright hurting. In addition to the pain, my face began to flush and swell.
We quickly Googled cytoxan side effects and found the following:
If you experience any of the following serious side effects, seek emergency medical attention or contact your doctor immediately:
- lower back or side pain;
- chest pain, difficulty breathing, or swelling;
We decided at this point that the best thing to do was head to the ER at UCSF.
Great, another freaking trip to the ER. Argh.
We quickly grabbed all the things that I would need in case I was admitted. I am becoming an expert on grabbing things in a rush to go to the hospital.
Got to the ER in about 10 minutes. I am very lucky to live super close to UCSF so getting there is always a snap.
Walked into the ER and the waiting room was packed with all kinds of sick people waiting to be triaged. I plopped down my ID and insurance card which I always keep handy these days and let the admissions person what was going. It should be noted that you can’t go into a whole slew of detail with the folks admitting. They might be nurses, I’m not sure, but they are not the ones that will necessarily prioritize you or get you much help.
Thankfully, there was a nurse sitting next to her that heard that I had had chemo that day and they immediately grabbed me and pulled me in to get vitals and story. The nurse (or murse / man nurse) was probably the most honest that I have had in the ER and very sweet. He let us know that that they have 39 beds, but 50 people. But then he told me that he would put us on highest priority and went on to say that there were probably 7 people that didn’t even need to be there (ie, go see your damned doctor).
We waited about 30 agonizing minutes while the pain got worse and worse. I couldn’t sit, I couldn’t stand. My back was aching to high hell.
Finally they got me a bed and a room. I saw the ER resident that I had seen on the last trip – Dr Max (who by the way is a young, hot doc) – rolling into another room so when my doctor came in to get the story, I asked her if I could have Max again because with my complicated story, I felt that to get the background data would take a long time. She said that she would find out if he could do it and left.
Meanwhile, I continued to squirm in pain. It was getting worse. My mom was doing her best to comfort me while looking completely helpless and sad. I can’t imagine how it feels to see your child (no matter what age) be in pain like that, but from her face I could tell that it is a horrible thing that no parent should have to go through.
Mark showed up around 11pm and graciously took the helm so that my exhausted mom could go home and get some sleep. It was then he who did his best to comfort me. One thing can be said about him and that is that when in a crisis he is one of the best remedies. For me, at least. I don’t know what it is, but he goes into stand-up comic mode which is both raw and extremely funny. When you are sitting in a room feeling like you are about to die there is something to be said for laughing through the pain.
The pain began worsening. It had now moved from my sides to my upper thighs. It was a dull, but hardcore ache that wouldn’t go away. I was literally writhing in pain. It is funny because you always read that expression in books or hear it on movies, but I had never experienced it. Until now and the only thing I could think was “writhing in pain” as a way to describe it.
Then the vomitting started. Every lovely bit of dinner. And more.
With all of this pain going on, I also needed to empty my bladder. And, yes, emptying my bladder consists of self-catheterizing. Sadly, because I was shaking so badly I was unable to complete this mission on my own accord which left me only one other option and that was to get a nurse to do it for me. This was nothing new to me and at this point I have left any potential shame behind me when it comes to hospital folks viewing the nether regions.
In comes Nurse Carli (yes, like iCarli and don’t think we didn’t actually have a conversation about this) to milk my bladder. But she only ended up taking a urine sample which obviously didn’t empty the bladder completely.
Fast forward to who knows how long later and I tell Nurse Aaron (a dude, obviously) that I really need to be cathed. Nurse Aaron, by the way, is a young, hip looking dude who I can immediately tell that I like by his relaxed and cool demeanor. The exact kind of nurse you might expect to find in San Francisco, but not what you would picture as a nurse (and not gay either). Aaron gets his supplies and starts to go to work while Mark is busting jokes left and right (completely inappropriate jokes). Nurse Aaron is laughing his ass off while attempting to insert a catheter into my urethra. I’m laughing and writhing in pain while this man nurse is digging around mah stuffs. Nurse Aaron says that he can’t get it in. He says he has “never missed”. He tries 4 different trays before finally admitting defeat and deeming my urethra worthy of a Guinness Book of World record for hardest to cath and goes off to find Carli to see if she can defeat the urethra from hell.
Carli and Aaron stand outside the door talking and a bet ensues. No lie. Carli comes in and we start to laugh about the bet that she is confident that she can win. She tells me that Aaron deems himself “the vagina whisperer” and we both agree that this is clearly where he going wrong since the urethra is not the vagina. Team Girls!
Carli gets up in my business while Nurse Aaron is standing behind the curtain waiting for sounds of relief. No sounds come. Everyone seems unable to make this happen. My bladder is damned full. This is the point that Nurse Aaron comes back in the room. I have had some pain killer by IV but it is again wearing off and I’m feeling not so hot again. We decide to use the tiny catheter that we used for the urine sample and are able to insert that while I am sitting there. So picture the scene…
Me sitting on a hospital gurney in agony. Mark standing on my left side making jokes. Nurse Carli standing on the right side of me with her hands all up in my beeswax. A spotlight shining brightly right in my crotch. Nurse Aaron standing at the end of the bed. My urine going into a bucket with a tiny catheter sticking out of my urethra which Carli calls “your little wee wee”. Me in pain. All of us laughing and joking at the ridiculousness of this scene. And then Dr Max pokes his head in and looks completely disturbed and slightly embarrassed because my legs are spread over the handrails of the gurney and he basically has the money shot in his face. He ducks out and we call him back in. He seemed to hesitate, but reluctantly joined the cathing party. Yes, there were now 4 people standing in this room having a conversation with my netherregions in their face.
It has to be said that trips to the ER are neither pleasant, nor enjoyable. But this particular one consisted of the most pain I have ever had in my entire life with one of the funniest experiences I have ever had. Thank you, Nurse Aaron, Nurse iCarli and Dr Max for appreciating our sick senses of humor and joining in the party.
Around 4am I was given an IV of Benadryl to help stop the swelling and rash on my face, neck and back. This coupled with the dilaudid made me pass out. Poor Mark stayed up and kept a watch on me. They had told us that I would be admitted for a day or so of observation and that we were just waiting on a room. I woke up around 7am still in the ER and still waiting for a room. My mom had come back and Mark had gone home to get some sleep. Changing of the guards again. Finally I was taken up to my room.
And it was there that I stayed for the next 3 days being poked at and prodded. The only fun I was having was when I was given the dialudid by IV. If you can call that fun. They also started giving me oxycotin. I hated it. It made me sleep and sleep.
At the end of the 3 days the determination was that I had had a bad reaction to the chemo (DUH!) and that I had a urinary tract infection which is pretty common in people who cath and are immunocompromised. I was put on antibiotics and sent home.
And here I am. At home. The three days felt like a month. I came home and found myself checking things in the refrigerator that I had bought on Sunday because it seemed like they should have gone bad. That is how hospital time works. One day can be an eternity and when you come out it feels like you are back at the bottom of a really big hill that you have to climb up yet again.
I am feeling good again – as good as I can feel these days – and my spirits are up. With every trip to the hospital or every unexpected turn of events I find myself getting more and more sentimental and contemplative. I went to the farmer’s market yesterday at the Ferry Building in San Francisco and sat on a bench looking around at all the people. It made me teary-eyed. My feeling was one that went from a deep sadness for my situation to jealous of all the people to joyous and back to sad. An endless loop of confusing emotions.
Then a little girl, whose dad was organizing bags on the bench next to me, looked at me with an inquisitive face as I was sitting there with my cane and my medical mask covering my face. I said hello to her and she immediately brightened up and gave me a smile and said hello back. Then she asked, “Why do you have your face covered up?” in the sweetest and most innocent way that only a child could ever do. I replied, “So that I don’t get sick. Isn’t that crazy?!?”. She looked back at me and gave a little giggle and said, “Yes. That is crazy.”
Yep, folks, that is how this goes. Life is crazy, but damn it, it is a beautiful thing.