Recovery #lupus #addisons

Recovering from the spinal tap has been up-and-down.

I have Addison’s Disease, which is an adrenal gland insufficiency, caused by autoimmunity. The adrenals are responsible for responding to and handling stress. Because mine don’t effectively produce cortisol to handle stress, I take replacement hydrocortisone. The amount of cortisol you need daily can change, as do daily stress factors. “Stress” refers to the obvious *regular* stress of daily living, but also encompasses excitement, getting your period, and getting sick. All of these things would cause the body to release more cortisol. Since my adrenals don’t do that, I have to take extra hydrocortisone in a stressful event. It’s a shot in the dark most of the time. There is no blood meter for cortisol. I just have to guess. If I don’t take necessary hydrocortisone, I will have what is called “Adrenal crisis” or sometimes called “addisonian crisis”. If a crisis is not treated with emergency steroid injections, it can be fatal. Most ambulances do not carry these injections. There are small charities working on this now.

Back to my spinal tap. I did not “stress dose” my hydrocortisone for this procedure. I have already been taking a stress dose to deal with the aftermath of the Rituxan treatments. I was concerned that my current stress dose could be a little too much, but I can’t get through the day without getting pre-crisis symptoms if I don’t take it. I didn’t take extra for the tap because I felt I was already taking enough “extra”.

I did well during and after the procedure, except for taking a nap after. But about 2 days later, I crashed. I had a delayed stress reaction from the spinal tap. I got really dizzy and weak, and my chest felt really heavy. Normally when I’m low on cortisol I feel like vomiting first, but I had different symptoms this time, so I didn’t recognize it right away. On top of that, I got a massive post-tap headache. I felt really, really awful.

When I realized what was going on I stress-dosed, and it definitely helped. The headache was another story, though. I’m still taking the stress-dosing day by day.

As far as spinal tap side effects go, it’s been a little unpredictable. The day of and day after did not consist of any headache at all. It made me wonder what my intracranial pressure is on any given day. My back has been pretty sore, most likely from the local anesthetic injections into the surrounding tissues. Some of the soreness traveled down to my butt and legs, which is probably just a result of those muscles compensating for my lower back. The headache hit me Sunday night, and it was really bad, and atypical of my usual daily headaches. I took imitrex and it helped, but curbing the adrenal symptoms was difficult to deal with at the same time. I still get headaches and dizziness, so I’m wearing my back brace intermittently to keep some pressure on the area. The nurse said applying pressure could help.

The puncture site is nice and clean. I left the dressing on for 2 days. I don’t have any swelling redness, or pain when I touch it. It is slightly bruised from the injections, which is probably why I’m sore. When I bend over it’s sore and tight in that area. All to be expected.

I gave lying flat on my back a try for the headaches, per the nurse’s suggestion, but it doesn’t help me. My problem is that lying flat on my back on a good day would give me a headache anyway, so it’s not going to alleviate one I already have. It just seemed to make it worse. Don’t rule it out for yourself though, it really does help other people, post-tap.

Since I get chronic headaches anyway, It’s kind of hard to tell sometimes if it’s a tap headache or a regular one.

Overall, it’s been a little rocky, but most importantly, I have no signs of infection.


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.

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.

Things that make you go skjbfskjbfsjhdbfs

Don’t read this if you’re squeemish.

Spinal taps. Lumbar punctures. Whatever you want to call them. Both names make me cringe.

In 2009 I was in the hospital with some kinda flu-thing. They never quite figured out what it was, although I figured it was H1N1 and they just didn’t tell me so I wouldn’t freak out or something. (not that I would)

They ran a bazillion tests, and when I told the ER doctor I had a headache, she decided it was time for a spinal tap, to make sure I didn’t have meningitis. Oh boy.

So about an hour went by from her telling me I needed one to me actually getting it. The doctor came in and prepped my lower back, and gave me a shot of lidocaine in the area to make it sorta numb. Yeah, right.

Then I hear her ask the nurse for a spinal tap needle, and he goes “The big one?”

Oh God.

I hope she gave him a talkin’ to after that. Terribly unprofessional on his part.

They bent me over a table and performed the procedure. When the needle went in, it sent an electric shock down my leg and made me jump. It was really weird.

All the while, my mom and a sweet nurse lady were holding my hands. I was crying silent tears, because if I moved at all, that would be really bad.

When the worst was over, they had me lie flat on a table, and they gave me a bandaid. That’s all you get after that, a friggin’ bandaid.

A few moments after lying still, everything that just happened hit me, and I had a full-fledged panic attack. They tried to calm me down just by talking to me, but I couldn’t breathe. I sat up and I vomited on my mom’s feet. They gave me something, either xanax or vallium, I don’t remember. After that I fell asleep.

And of course, I did not have meningitis. I didn’t think I did. I know I’m a headache person, but the doctor was adamant in pursuing meningitis and I was afraid not to go along with it.

The next few days, I had some of the most horrible pain I have ever felt. When you get a spinal tap, drawing the fluid creates an air bubble in your spine, and until your body expels this air bubble, you can count on getting some ridiculous headaches.

My back muscles freaked out. I remember screaming in pain, because the fucking nurse didn’t get how to use a clock. She would always come in to give me medicine late. If she had done it on time when she was supposed to, I wouldn’t have had these lapses in pain. I hated her. She didn’t know how to administer medicine into a vein. She did it too quickly and flooded my veins and it was really painful.

Ever since then, my lower back hasn’t been right. I had to wear a lumbar brace for a couple months right after just so I could get through the day. Bending over was exhausting, and I realized I couldn’t do things like wash my face in the bathroom sink anymore. It hurt too much. To this day, my back muscles still get fatigued really easily, and I can no longer sleep on my stomach because it just feels like I’m hyper-extending my lower back.

This all happened long before I knew I had Chiari Malformation. I recently read that it is not safe for people with Chiari to have spinal taps. The change in pressure in spinal fluid can actually cause further herniation of the brain. This of course made me cringe. And it also makes me wonder about what kind of adverse effects it has had on my brain, and if it is responsible for the progression of my symptoms.