Spinal Taps and Google Maps. #Lupus

I had a spinal tap done yesterday. I had one about 5 years ago that went terribly. With that experience, I really wasn’t looking forward to having another one. Luckily, it went differently.

First off, I’m going to say that if you have to have a tap done, get it at a major city hospital where the doctor probably does dozens of them a week. The problem with my first tap was that it was done by a local doctor who didn’t have the confidence to do it, so she fucked it up. I’ve had ongoing weakness in my lower back since then. I don’t know what the hell she did back there, but I barfed afterwards and they had to give me Valium because I had a panic attack.

I was originally scheduled to go next Thursday, but my doctor called the hospital and they were able to squeeze me in yesterday morning. I was happy to get it over with rather than worry about it for a week.

If you’re nervous, and you have Xanax with you, take it before you check in. Once you’re admitted you’re not allowed to take anything. I learned that the hard way, and sat there with heart palpitations. I felt like I was in the waiting room for an eternity.

Some dude at the front desk told my mom she wasn’t allowed to be there with me. I panicked a little on the inside. My mom followed me back just to take my bag for me when it was time. The nurses and doctor didn’t say one word about her being there, and even offered her a chair. One of the nurses handed her some post-procedure information and said “here’s some bathroom reading”.

If you’re a funny nurse, it makes being a patient suck a lot less. Thank you for that, and be proud of it. It’s the little things, y’know?

I’m built like a feather, so I was able to lie down for the procedure. I was on my side, knees pulled up to my chest as far as they could go (apparently, I’m pretty flexible, despite feeling like the Tin Man most of the time). For my first tap, they made me bend over a table, which isn’t unusual, but lying down is much more comfortable. I recommend it, if you can choose. The nurses were really nice and reassured me that it wasn’t going to be as bad as I thought. The doctor came in and prepped my back, and made some jokes about having to do taps on people that weigh 300lbs. He used ultrasound to find the right spot (a technique that was not used the first time) and marked my back with a pen. They first injected the area with Lidocaine to numb it, which is honestly the worst part of the whole deal. It can really burn sometimes but it wasn’t too bad yesterday. This doctor really knew what he was doing. After they do that, the tap needle goes in. They used a pediatric needle, another thing I recommend. It takes longer but is less traumatic in the end. I didn’t feel pain really, but I wasn’t completely numb either, I felt everything that went on. When the needle goes in, you’ll feel a weird pop, it’s hard to describe, but not really painful. Just strange. Sometimes, some people get an electric shock pain that shoots down their leg and makes it kick. It happened to me the first time, but not this time. It can be painful. Somehow they managed to avoid it altogether yesterday. Once the needle is in, you can feel pressure in your lower back, but it wasn’t really painful. It is uncomfortable, though. As the fluid was being collected, I felt some tingling in my lower spine. The doctor had to ask me to relax because I was tensing up, making the fluid take longer to collect in the vials. It took a while anyway, because they used a really small needle, but given the choice, I’ll take the small needle over a big one. There was a point during the procedure where I thought I was going to panic, because reality set in and I remembered how it went the first time. I focused on this picture on the wall and started singing the lyrics to some song in my head. I can’t remember what the picture or song was now, but I managed to somehow talk myself out of the anxiety. I wasn’t able to count because I couldn’t see, but my mom said they took 5 vials that were fatter than your standard blood vials. The nurse said it was nice and clear, which is great news.

After I was done, I thought I’d have to lie on my back for an hour. Since the needle was so small, I was able to get patched up and go right home instead.

The ride home was hard. Traffic was stop-and-go for part of the way. After the adrenaline wore off, reality hit me and I just wanted to cry the whole way home. My back has been pretty sore on and off. I’ve also been having pain and tense muscles in my butt and legs. My neck has been pretty stiff. Spinal taps cause headaches in some people because it can create a small air bubble in your cerebrospinal fluid. Luckily, I haven’t had any major headaches, just small ones.

When I got home, I crashed. I couldn’t stay awake. I slept for about 2 hours. My body doesn’t handle stress well because of my adrenal insufficiency.

I’m not sure how long it will take my back to heal completely, but I have to keep the bandages on it for 2 days and skip showering to keep the puncture site sterile. My muscles are pretty sore. I can’t bend over or lift anything. I have a back brace to wear when the pain gets bad.

I will get the results when I go back to my rheumatologist in a couple weeks. He is looking for the cause of my chronic daily migraines. Even though the SPECT scan showed vasculitis, it didn’t determine the specific cause. The Rituxan does not seem to be helping at all. Once we get the results, we can figure out if the Rituxan was the right move, or if I need another lupus medicine.

I love you Mom.

On the way home from the hospital, I saw a Google Maps car. I’ve never seen one before so I was strangely excited about it.
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visit to new rheumatologist #lupus

I spent the day in Los Angeles on Tuesday. I first visited my cardiologist to check in with him about my blood pressure. He raised the dose of bp medication and we’ll go from there. It was a pretty short appointment.

From there I went to see a new rheumatologist. I’ve seen him once before, but I’m hoping he will take me on as a new patient. I brought him up-to-date with my current treatments and problems. He seemed surprised that the Rituxan hasn’t improved anything yet. Even though my SPECT scan shows evidence of severe vasculitis in my brain, he seems to be unsure what the cause is. My other doctor didn’t do a spinal tap, which would ultimately show what’s going on in my brain. My new doctor ordered one, and I’m having it done tomorrow morning. He is looking for lupus activity, but also a couple other things, like a virus or fungal infection. He said that someone with a compromised immune system like mine could be susceptible to infections like that. There was an undertone of irritation from the doctor about how my other doctor has been handing everything. He also talked about doing an experiment with Solu Medrol, likening it to the “Pepsi Challenge”. I would take a gram of Solu Medrol every day for 3 days and if I respond to it, then we’ll know it’s the lupus causing my headaches.

Obviously, I’m not looking forward to getting a spinal tap done. I had a bad one done about 5 years ago. But this time, it won’t be at a local hospital (which may as well be “Bob’s spinal taps, hair care, and tire center”) I’m getting it done at Cedars-Sinai, and it will be guided by ultrasound with a pediatric needle. They were originally going to make me wait until next Thursday to get it done, but the doctor called the hospital to get me in sooner. I’d much rather get it over with than think about it for another week.

I found out my other rheumatologist was billing my insurance for more time than I was at the office, which is one of the reasons why I wanted to switch. Sometimes while I was there for an infusion, I wouldn’t even get to talk to her, and I don’t think it’s good practice for her to bill my insurance as if she spent time with me. Some of my infusions were over in 2 and 1/2 hours, and she billed the insurance for 4 hours. It makes me question the legitimacy of the co-pays I owe. They would never let me pay the co-pays while I was at the office, it was more like a “we’ll send you a bill” kinda thing. And lately, I have an outstanding balance and they are threatening sending me to collections. My information has been given to receive statements a hundred times, but I still haven’t gotten anything, and no one has been willing to explain why. It’s all a bunch of horse shit to me.

Last time I was at her office, she was having a meeting in her tiny waiting room with a couple other ladies about how to attract more “high-end patients”. I was pretty insulted. I didn’t know the Hippocratic Oath stated to “only treat rich sick people” somewhere.

So those two incidents, along with the fact that I’m not doing better and that she seems unwilling to get to the bottom of it, I decided I need to look for care elsewhere. I hope I chose the right path.

My neurologist is giving me nortriptyline for my headaches. I’m not excited about taking it since it’s an antidepressant, but from what I’ve read, it has been really helpful for people with migraines, and also helps people sleep too. I have a migraine almost every day. I sleep for shit, too. Both of these things are keeping me from having a life beyond the couch.

The heart palpitations are still bad, and I have an appointment with my Endocrinologist late September. I’m gonna have him check my thyroid.

Other than that, same old shit. Still in pain, still not sleeping, still have no social life.

That’s it for now, I guess.

2-month mark #rituxan #lupus

I had my final Rituxan infusion on June 12th. It’s been 2 months, and so far I don’t feel any different. I actually feel worse. I was told I would feel worse before I started feeling any improvement. The magic number is 3 months, so I still have a month to go before I will know if this first round of Rituxan worked or not. My headaches are still pretty bad. The imitrex seems like it’s not effective anymore. I don’t take it that much, because you’re not supposed to. But even though I save it only for the really bad days, it’s not helping anymore. I have been completely incapacitated by migraines for the better part of the year.

I’ve been running on 5-6 hours of sleep a day for at least a month. I’m pretty exhausted. I can’t take naps because I never fall asleep, and I just get a headache anyway. Pain and heart palpitations have me up by 5-6am and I rarely get back to sleep after that.

I’ve been treating pain with ibuprofen and nothing else. I can’t take anything else. I was on tramadol for a while but I started having a breathing issue (sleep apnea) and the tramadol made it worse. I was on tramadol for about 5 years before I started having a problem, so it’s still a mystery as to why it makes me have sleep apnea. There are other medicines that make me have sleep apnea, too. I was tested for sleep apnea, and they of course didn’t find anything because I didn’t take the tramadol. I feel like doctors look at me like I’m nuts when I tell them about this issue. I was given vicodin, and I found out I’m allergic, and it didn’t help anyway. I’ve never found a muscle relaxer that didn’t make me feel fucked up in some way, from vomiting to worse pain to mood swings. The fioricet I take for my headaches can help a little, but it has caffeine in it, so I can’t always take it. So far they haven’t given me anything that has provided any substantial pain relief. My rheumatologist keeps pushing antidepressants on me, and I really don’t want to take those. I tried Cymbalta a few years ago, and it didn’t help at all. It takes 6 weeks for an antidepressant to have any effect, and if it doesn’t work, you go through a weening and withdrawal period. I just can’t do it. I already feel horrible enough, and I really don’t think fucking with my brain chemistry is going to help inflammatory pain. I am at a loss as to what to do for pain relief at this point. I haven’t even talked about what pills in general have done to my stomach. Lets just say if I could say to hell with pills and inject everything instead, I’d be all for it.

I recently went to the cardiologist. I have been having really bad heart palpitations, chest tightness, and shortness of breath. It will happen when I’m just sitting. It happens when I eat. I don’t eat hardly any salt anymore because of it, but it will still happen. It’s like the digestive process itself causes palpitations for some reason. They wake me up in the morning and happen when I go to bed at night. There doesn’t seem to be one specific trigger, more like a little of everything. They are bad enough that I can’t do anything physical. My blood pressure has been high, in the 140/80 range most of the time, and my heart rate can jump anywhere between 70-115 for no real reason. It’s pretty uncomfortable. I wore a holter monitor for 24 hours, and dealt with the leftover adhesive and bruised ribs for another 48. The doctor’s analysis was basically “Yup, you have palpitations” but that there was no irregular heart beat. I had an ultrasound on my heart and carotid artery. There was no indication of inflammation or lupus activity there. He did mention that sometimes the inflammation can be so small that it does not show up in an ultrasound but can cause symptoms. He talked about putting me on an aspirin regimen but since my stomach is a mess that he didn’t want to give me another pill to upset it. He seems to think that heartburn could be the cause of my palpitations, and while I don’t think it helps, I really don’t think that’s the main issue.

The cardiologist also gave me norvasc, a calcium channel blocker for my high blood pressure. He said it might help with my headaches, too. I used to be on nifedipine for my raynaud’s, which is also a calcium channel blocker. It gave me a nice blood pressure but it gave me terrible headaches and heart palpitations. The norvasc works a little differently, so the doctor was hopeful that I wouldn’t have a problem with it. So far it hasn’t helped my blood pressure that much, and today I felt like crap after I took it. If only they could find the real problem instead of just handing me some pills.

I consulted Dr. Google and came to the conclusion that I need to be tested for overactive thyroid. I’m too hot all the time, I’m skinny no matter what I eat (trust me, it’s a curse) my hair is somewhat thin, I get pain in my throat that is unlike a sore throat but feels more like an ache in my ‘glands’, and, the heart palpitations and elevated blood pressure. Ever since I started treating my stomach issue, I’m hungry all the time. All of this points to thyroid.

Sometimes you have to google things. Sometimes doctors don’t come up with the answers, and you have to narrow it down to a certain specialty in order to obtain a diagnosis. I’ve successfully diagnosed myself before, and it wouldn’t surprise me if I was right this time, too.

My rheumatologist was in a panic about the heart palpitations, as if I hadn’t been complaining about them for a few years. She rambled on about cytoxan for heart involvement and made me lose my confidence that Rituxan was the right choice. It’s weird to feel like you have the wrong medicine running through your veins. I don’t necessarily feel that way anymore, but I am switching doctors. I need someone with more balls, to be honest. She’s never been very sure of herself, and makes it a habit of dangling the proverbial “you’re going to get better with this new medicine” carrot in my face. I just can’t take it anymore. I need someone to tell it to me straight and someone who can make decisions without that “….well, I don’t know….” undertone.

I’m having a terrible time with my memory. I’m having a terrible time typing and remembering to spell things. I’ve never had a problem with spelling before. I was the kid that got 100% on spelling tests. Sometimes my cognitive abilities are so compromised that I can’t watch a movie. I can’t read things, either. It’s frustrating and sad.

In conclusion, my pain is bad, my headaches are bad, I’m not sleeping, my heart is pounding, I can’t remember shit and I need a new doctor. Where the fuck is the Wizard of Oz?

And no, I don’t have POTS.

Tuesday’s appointment #lupus

I went to see my rheumatologist on Tuesday. It was a strange appointment. I feel like sometimes I leave there more confused than when I walked in, which has made the experience in general frustrating and unreliable. I was in a brain fog, as usual. My mom is always there to help me organize my thoughts and remember things I wanted to tell the doctor. I opened up by telling her I was having really bad heartburn issues that wake me up really early in the morning and have changed my diet. I told her about my high blood pressure problems I’ve been having lately and the bad heart palpitations I get after I eat and when I get up in the morning, and when I first lie down at night. It’s been a real issue for me for a few years, and lately it’s been a lot worse. But for some reason this time she decided to actually take them seriously. She seemed pretty worried about it. She talked about how it could be a nerve conduction issue, suggesting inflammation in the pathway between my brain and my heart/stomach. She went off into a tangent about Cytoxan, and about how she hates using that drug, but that Rituxan wouldn’t help that kind of problem. She also talked about how I would have to take a pre-drug to help prevent me from becoming infertile from the Cytoxan, and that it’s really expensive. We got back to the subject of heartburn when she started talking about having an upper endoscopy done. I told her the heartburn isn’t something that is constant, that it flares, and when it flares it goes on for weeks. She seemed irritated when I said that, and said she “misinterpreted” what I said because it was the first thing I told her about. I didn’t realize there was a certain order I was supposed to tell her things, especially with my concentration difficulties, I just went with the first thing I remembered. And the fact that it isn’t a constant issue doesn’t make it any less important or less alarming, so I don’t know why she acted like I mislead her. She had a lot of sciencey things to say to me as usual, about compliment levels and all that. She keeps telling me that they’re normal except for one being slightly off. She also told me that they don’t always correlate with lupus activity or how a person feels. It made me wonder what the point was of her telling me these results every time. She never bothered to explain to me what the hell it means anyway. She said I also tested “false postive” for kidney involvement, and that a lot of her patients are testing false positives. It made me wonder how she would know one way or the other. The lab she uses, from my understanding, isn’t nearly as accurate as Cedars-Sinai, and it makes me uncomfortable that my tests are sent there sometimes.
The fact that she threw another drug into our conversation, and a really frightening one at that, makes me uneasy. With the Rituxan, it makes me wonder if I have the right drug in my body again. If she had listened to me about my heart palpitation problem sooner, perhaps I’d be on a different treatment now.
I’m tired of how wishy-washy she is, her lack of confidence in herself, her inability to make a decision sometimes, and her unavailability. I’m ready to switch rheumatologists.
I have a cardiologist appointment on Monday. She got me an appointment right away. She is really concerned. But I just don’t understand what took her so long to be concerned about my heart when I’ve been bitching at her about it for a while.
As far as the effects of the Rituxan, I don’t feel anything yet. I feel pretty crappy, actually. I’ve had to take extra hydrocortisone to treat my Addison’s, because I can feel my cortisol drop in the afternoon. It makes me want to vomit. I can hardly get through the day unless I take extra. My rheumatologist suggested the stress-dosing as the cause of my heart palpitations, but I really don’t stress dose unless I absolutely have to, and it’s a replacement dose, so I shouldn’t really have side effects from it. Besides, I’ve been having the heart palpitations since August 2012, and this recent stress-dosing problem is only as old as my Rituxan treatments. I’ve been taking Hydrocortisone since 2005 and haven’t ever had a problem with it. I really don’t think that’s it. Plus, if I’m ready to vomit, I have to stress dose, unless I want to end up in the ER for Adrenal Crisis. My heart palpitations happen at very specific times, and it never correlates with when and and how much Hydrocortisone. It just doesn’t make any sense to me.
I’m pretty annoyed, and ready to see a doctor that has some balls. I know I am a complicated case and I need someone who is fascinated rather than intimidated by it.