I haven’t had a cold in a long time. I’ve been pretty good at avoiding it mostly by just not being in crowds, and using hand-sanitizer, and not touching my face. Strange how these things managed  to keep me well all this time. 

Anyway, I did actually get a cold. In August. Figures. Pretty typical of California though. I woke up with a sore throat last Tuesday with no fever, and wrote it off as either allergies or a lupus flare (sometimes mine cause sore throats.) But I knew something was up when it never went away. I got severely congested, and started having sinus headaches. Still no fever at that point, which was probably due to the rx ibuprofen I take regularly. I went to the doctor and he gave me azithromicin because I could’ve had a sinus infection, or very easily developed one eventually.

I had my last dose yesterday. It messed up my stomach pretty badly for a few days. I started running a fever because I had to stop taking the ibuprofen because of the stomach irritation. I’ve been taking Tylenol Cold, and it helps, but not as well as the ibuprofen. The weather outside got pretty hot in the middle of my cold, and I feel like I’ve been absorbing the heat like a lizard. I’ve been taking my temperature a lot just to keep an eye on it, and it hasn’t gotten out of control. I feel like I’ve been sick forever though. I was supposed to have a Benlysta infusion today and I had to move it to next week, because you can’t have them when you’re sick.

 I’ve also had to stress-dose with hydrocortisone to support my adrenals during the stress of being sick. I noticed it seems to be helping with pain in my smaller joints as well, which makes me wonder if I shouldn’t be taking more to help with lupus pain. The painkillers don’t seem to keep away that kind of joint pain. Another question for the doctors.

Lupus and nerves and some stuff.

I’ve been in a flare for a good week and a half at least. I remember coming home from gamestop and telling my mom I was getting sick, but it never really turned into a cold. It’s weird how a flare can feel like a cold. I’ve had the sore throat and stuffy nose, but I haven’t really had a fever or anything. I’ve been cycling through hot flashes and chills. I woke up last night drenched in sweat, but this morning I couldn’t get warm for anything.

The most annoying thing is that this flare has fired up my nerves again. I had neuropathy 2 years ago and it’s what led to my diagnosis, and it seems to be rearing its ugly head again. It bothers me the most in my legs. The pain in my knees and back have been bad, but I’ve also been having tingling and numbness, accompanied by severe itching that is keeping me up at night. Yup, itching. Most people probably don’t think about how itching is a form of pain. When nerves misfire they can send all sorts of wrong signals to the brain, including the itchy ones. I don’t have a rash, so that’s how I know it’s not an allergy. Plus, it’s all over, I can’t really pinpoint it, and it feels really prickly, the way the numbness can feel sometimes. Sometimes an itch will come on so sudden and intense that I kick my leg out. I took a hot bath but only had relief while I was submerged in water. Tramadol has been helping with the pain and itching, but I can’t take it at night before bed because it keeps me awake and makes me wired for some reason. It usually makes people drowsy but I sometimes experience the opposite effect. All in all, it’s driving me crazy.

My doctor clarified today that if my Lymphocytes are still going up and down, I can still have my benlysta treatment for this month, but if it dips lower than usual, that’s when we’ll talk about what to do next.

I’ve been doing the neck exercises that the Neurosurgeon showed me. He said he wants me to do 3 sets of 7 every day, but I’m just starting out with one. I want to ease into it. My neck is terribly sensitive, and it gets easily aggravated from these exercises.

On a side note, I’m still trying to gain and keep weight on. I’m hovering around 111lbs, but would like to be at 120. I started putting an avocado in my daily fruit smoothie. As long as you have tangy fruit in there with it, you can’t taste it. Plus it’s better than the boost plus shakes because it doesn’t have tons of sugar in it. With an avocado I’m getting 234 calories and 21g of fat, plus everything else that’s in the smoothie. Also, nutrition shakes really only offer protein most of the time, which only works for bulking up, not for gaining actual body fat. The boost shakes really make me nauseated. I can’t handle a bunch of processed sugar in my stomach at once and drinking them was making me feel like crap. I’m glad to have found a more pleasant and probably healthier alternative.


Lupus flare.

I’m having my first big flare since I started Benlysta. I have had other flares while on Benlysta, but they were mostly at the beginning and pretty manageable. This flare is more like the ones I had even before I was on the max dose of Plaquenil. I’ve been waking up at 3-4am hurting everywhere. It’s like the aches you get when you have the flu. I’ve also been having a problem itching. I don’t have a rash, so I’m thinking it’s part of the nerve pain. It’s really annoying and it keeps me awake. I’ve also been having a sore throat and I wake up in pain from that too.

All in all, I’m sleeping like shit.

I have no energy, in part because of not sleeping, but flares just make you dog-ass-tired. I get so tired I can’t bare to stand up sometimes. 

My pain is most intense in my legs. I have a problem with my lower back that makes my ass and legs hurt pretty badly. My knees have been swollen lately, which is odd, I don’t usually get swelling in my joints when they hurt. My knees have been a problem since I was little, though.

I don’t remember if I blogged about it or not but my lymphocites are low for some reason. I’m supposed to have blood drawn a week before my infusion to see what they are, and if they are too low, I can’t have the infusion. I don’t really know what that will mean for future treatments. Probably something along the lines of switching to Rituxan or Cytoxen. I heard those are gnarly. 

In other news, I haven’t had the MRI yet. I’ve been taking muscle relaxer (robaxin) first thing in the morning before any of the spasms start in my neck, and it’s been helping, but it’s also been making me feel woozy all day long. I only take a really small dose. That’s how meds work. You trade one uncomfortable thing for another. It’s never just relief. There’s always a side-effect or 12 to deal with, and you have to decide if the side-effect is better than the pain or not. Sometimes it’s not. I think that’s something healthy people don’t understand. You can’t just take your pills and feel better. 

I’m still trying to be active. It’s a bitch. I really need a better exercise plan than walking my dog, but I’m having a hard time just doing that right now. I’ve managed to put on a few pounds and stay at 111-112, but I’d really like to be at 120.

Other than that, I’m still Jill. I’m still awesome. Don’t miss out.

Chiari and conflicting opinions.

As you read previously, I had an appointment with a top chiari specialist last Friday. I haven’t written about it because I’m still mulling it over in my head, and I’m also waiting on another MRI.

I’ll just come out with it. The chiari specialist says I don’t have chiari, or syringomyelia either. Although I have low-lying cerebellar tonsils, I don’t have any blockage in the flow of cerebrospinal fluid, and that just because you’re tonsils are low doesn’t mean it’s a malformation. What I and the radiologists thought was a syrinx, is actually hydromyelia, a pocket of fluid that sometimes appears in childhood growth, and occasionally still makes an appearance into adulthood. It doesn’t cause any problems.


MRI from September 2012

The explanation I got for all the pain and headaches is that I have a long, thin neck, but I still have to support the weight of a normal-sized head, causing instability. My muscles also probably have some atrophy from not being able to exercise regularly. This combination is probably causing severe tension headaches.

He showed me some isometric neck exercises to strengthen these spots. So far they’ve just aggravated the muscles, but that goes with all exercise in the beginning.

I’m going to have another MRI on my brain just to see where I’m at now. The MRI he was looking at is about a year old. I won’t feel comfortable with being misdiagnosed all this time until the specialist can comfirm it to me on a new MRI.

I’ve seen 2 radiologists, a neurologist, and a neurosurgeon, who all validated the Chiari Malformation and Syringomyelia diagnosis. The neurosurgeon was ready to do surgery. The specialist said that radiologists tend to over-diagnose to avoid the repercussions of under-diagnosing. Plus, not that many people know their ass from their elbow when it comes to chiari, all they’ve seen of it was a paragraph in some textbook from med school.

But in the end, I’m still conflicted. I’ve lived with this diagnosis for a year, and all the symptoms made sense. While I still have a doctor’s explanation for my headaches, there are a lot of things that are suddenly left unexplained now. The vertigo, hot flashes, heart palpitations, chest heaviness, headaches when I bend over, choking on water, clumsiness, dizziness, trouble with coordination and motor skills, memory and focus issues. I’ve had a lot of these symptoms for a long time, way longer than the period of diagnosis. I won’t feel sure of it until I get another MRI. It all just seems too coincidental. What are the chances of having a thing that looks like chiari, a thing that looks like a syrinx, many of the symptoms, but then not actually having it?

Don’t take it the wrong way, if I really don’t have chiari, I will be incredibly grateful. The only thing I really want is an explanation, and some pain-management. My pain and symptoms are so bad that I was ready to do surgery if it meant getting relief. But on the other side of that coin, I could’ve had surgery that I don’t need.

Still mulling.