exercise.

Exercise has always been really tiring for me. but I’m having a bad problem with it right now. Because of the amount of pain I’m in all the time, especially with my headaches, and the heart palpitations and breathing troubles I’ve been having from the solu-medrol, exercise has been nearly impossible for me. It gets so bad sometimes I can’t even go for a walk without some sort of consequences afterward. 

This has caused my muscles to atrophy pretty badly. I still try really hard to do some sort of exercise, but I always end up paying for it, no matter how small the activity is. On Monday, I did  a five-minute Tai Chi routine, and I’m still sore from it. Not just regular sore, but like “my legs shake and burn when I go up some stairs” sore. It’s fucking ridiculous. I come from an athletic family and was athletic before I was dealing with all this stuff so it’s really hard for me to be a “sit on the couch” person.

Rather than get frustrated, I’m going to be productive about it. I’m going to talk to my doctors about exercise rehabilitation and physical therapy. I’ve lost so much strength to the point where it’s hard to do everyday things like “use a can-opener” and I think this level of muscle fatigue could be contributing to my pain. It sucks because exercise also causes a lot of pain and soreness, to the point where I lose sleep because I hurt too much. I don’t know how I’m going to get through it but I don’t have a choice. I need my muscle back. No buts about it.

New Years Resolution

I’ve been thinking a lot lately about my New Years Resolution. Last year it was to raise awareness about Fibromyalgia, but then I found out I actually have lupus. I started this blog, and did a couple vlogs, so I think I held up to it fairly well.

I never really seem to have “traditional” NYRs. You know, like “Stop having a potty mouth.” So long as people keep being assholes, I’m not going to stop having a potty mouth. So I don’t see that happening in the foreseeable future.

I do need to exercise more, but considering my health gets in the way and it’s not just laziness, I’m not really in control of when and how much I am able to exercise. So there goes that idea.

I already eat pretty healthy because I have to. And I don’t need to lose weight (actually I’m working on gaining weight) So that’s out the window too.

Something I could see myself working on is the fact that I am very hard on myself. I hate it when I can’t do things or keep up with something because of my health. My school teachers used to make me feel like crap when I was falling behind and I haven’t figured out how to let go of that “feel like crap” reaction yet, even though I’m not even in school right now. It happens whenever I feel limited in what I am able to do. I’d really just like to have the mindset of “do what you can when you can and be proud of it and fuck the rest.”

I’d like to continue last year’s NYR with my blog to raise awareness and to help people realize that they aren’t alone when it comes to dealing with this stuff.

I’d also like to continue my ridiculous, almost obnoxious level of optimism. And being a ninja.

Out.

Potassium.

I’m still struggling with what I think are weird side-effects from the steroid I receive as a pre-med to my Benlysta infusions. I wrote an entry previously about leg cramps and potassium. It is stated online that Solu-medrol depleats your potassium and I figured out this was responsible for my legs cramping up so badly the night after getting my infusions. Also, my endocrinologist recently told me my Florinef was too high a dose, which also lowers potassium. While people with Addison’s are more prone to having high levels of potassium in their blood stream(actually, not me specifically, but most other Addisonians), I believe that since these medicines lower potassium so much, and because I probably don’t get a lot of it in my diet, my potassium is probably actually low. After some research and a little experimentation with fruit juice, I’m fairly certain this is also why I am experiencing anxiety-type symptoms.

So I decided it was time I tried a potassium supplement, so I picked up some potassium gluconate. It’s just a weak over-the-counter everyday dose. I’ve only been on it for a day along with a teeny morning dose of xanax, but I had a whole day yesterday where I didn’t get out of breath or have my heart jump outta my chest. It would be nice to not have to take the xanax anymore. I know I don’t have true anxiety. I don’t get attacks when I’m worried about something. I get it when I do anything physical. So it’s definitely related to whatever is or isn’t floating around in my bloodstream. I’m curious to see how it goes.

The human body is such an intricate web. If one thing is off, it sets off a whole wave of shit. And then I gotta be Sherlock Holmes and get to the bottom of it myself which, not to toot my own horn, but I seem to be halfway decent at doing. So, as always, my blog is meant to be interesing and hopefully point you in the right direction. Just don’t use it as a replacement for guidance from a real doctor.

Awareness.

There’s nothing more disconcerting than telling a new doctor your ailments and hear them say “What’s that?” This happens to me with Addison’s Disease. Lupus is more well known, at least the name is recognized. Chiari Malformation probably has the same level of awareness as Addison’s, though.

It’s frustrating having diseases that aren’t “famous”. Look at breast cancer. Not that I want breast cancer. But the amount of awareness for it is unbelievable. This level of awareness saves lives. I credit the fact that it’s something that can be sexualized. People love boobs. There aren’t campaigns for my 3 that are as arousing as “Save the Ta Tas” or “I love boobies”. Although, I hate seeing product companies profiting off breast cancer because they put the pink ribbon on their packaging. Some of them don’t actually donate to breast cancer, they are just “raising awareness”. You think you’re doing a good thing by buying that product, but they’ve just tricked you. Some charities only donate a small percentage of their collection to breast cancer. The rest goes to “administrative costs”. Whatever that means. I want more awareness for my 3, but I would hate to see it turn into something “trendy” or profitable.

People are afraid of what they don’t understand. It’s hard to make friends or be in a relationship because people don’t understand and it makes them afraid. They just don’t want to be bothered with dealing with it. When in reality, it’s not something they deal with at all.

Headaches, and Lupus relief.

I had a few days this week where I didn’t have a headache. It was amazing. I don’t even know why it happened. I can’t remember the last time I went without having a headache even for a day. But unfortunately, today they’re back, with a vengeance too. It came on around noon today, and I just can’t shake it. The whole left side of my face hurts, and it goes down into the back of my neck, my teeth are throbbing, and my upper back isn’t a happy camper either. These are a bitch. No medicine any doctor has given me helps. It will take the edge off, but it just doesn’t go away. I’m not on anything strong and I’d really rather not be. I don’t wanna be a zombie or feel all weird. I’d almost rather be in pain. I just don’t like the way that stuff makes me feel. There’s a good chance that I’ll wake up with this headache tomorrow. These bitches last forever.

In other news, I think the Benlysta is really starting to help my Lupus. I haven’t had to take medicine for my other pain, because I haven’t had other pain. I still get achy and tired if I am out and about or I’m on my feet too long, but it’s nice to not be in pain for no reason when I’m just at home relaxing. I think it’s safe to say I’m making progress.

Another problem I’ve been having lately is I’ve discovered that a couple medicines I take for muscle spasm relief contain lactose. I’m pretty lactose intolerant. I’ve been losing weight like crazy for, until now, an unknown reason. I was skinny to begin with, but I started to feel like I was disappearing. My pants are falling down a lot of the time. I’m 5’8″ and my healthy weight was 120lbs, but now I’ve dropped to 106lbs. I read that if a lactose intolerant person has lactose, their body feels the need to get rid of it quickly, and if this keeps going on, you become malnourished. So now, I’ve stopped taking the muscle relaxers altogether, and I’m taking the lactaid enzyme pill for anytime I have cheese or anything that might even have a trivial amount of lactose in it. I’m trying like crazy to gain weight, the healthy way, with things like nuts, hummus, avocado products (bleh lol), dark meat, beef, soy yogurt, etc. It’s amazing how hard it is to gain weight when you can’t have dairy. Plus, I have some digestive issues, and a lot of foods that are fattening just don’t digest well. I feel self-conscious about being skinny sometimes. I know I shouldn’t, but I’ve been picked on for it with the “do you have an eating disorder” comments. No, dipshit. Some people just can’t help it. I’d love to have some curves quite honestly. I’d love for my pants not to fall down. And my ass to be more cushioned, because I’m bony and sitting on hard surfaces hurts after a while. I’m starting to ramble. ChronicallyJill out.

Hello there, wordpress

You might notice that all the posts underneath this one have the same date on them, I’ve copy/pasted my blog from tumblr to wordpress in hopes of reaching more readers. Tumblr is fun, but I don’t think it reaches a lot of people. I notice wordpress also allows comments on posts and different things like that, that tumblr doesn’t have. 

Anywho, I hope you enjoy reading ^_^

Decaf Chai

Yep. That’s what’s replacing my coffee this morning. I’m cutting out caffeine, salt, and sugar for a little bit. Still yummy, but I’m missing my coffee already. It’s hard to cut out caffeine when it helps your headaches.

I’m having these episodes where my chest gets tight, it’s hard to breathe, my heart pounds, and I can’t sit still. I know it sounds like anxiety, but it’s not. They never happen when I’m stressed about something. They only happen when I do some stupid shit like *go up the stairs*…or….*make my bed*…or anything seemingly physical.

Caffeine, salt, and sugar seem to be a trigger. Not the sole cause of course, but they certainly aren’t helping.

I think these episodes are probably a side-effect of sorts. I’m not entirely sure from what but I have a hunch it’s from the Solu-medrol steroids they give me with the Benlysta infusions. When you have a big dose of steroids and you don’t taper down from it, you sometimes get withdrawal-type symptoms.

There are other things that could be causing this, the Benlysta itself perhaps, or something entirely unrelated to medicine (which I doubt)… I don’t really know, but I know that it’s been a complete pain in the ass to do much of anything lately.

Meeting with the Neurosurgeon

Everything is still a jumble in my head, but here goes.

What I am dealing with is not an emergency. The decision for surgery is solely up to me based on how much the Chiari is affecting my life. Which it is greatly.

The surgery itself would be endoscopic. They won’t have to open up the dura, or do anything to my spine. The surgery would only be bone removal, which would be less invasive compared to the additional dura/spine stuff.

In plain English, they have to make the opening of my skull where the spine and brain stem pass through bigger by removing a small piece of my skull.

He seemed confident that we could work around the Addison’s and Lupus. He was very comforting.

So now that I have this knowledge, I realize that my neurologist was just being wishy-washy and dragging his feet about the whole thing. He thought I would be some big-risk patient, and it made me terrified. The neurosurgeon thinks otherwise.

So on my to-do list now is to get referred to a neurosurgeon within my network, and to have the same chat with him, and go back and forth with my other doctors to figure out when the best time is for me to have surgery.

Then, of course, schedule the surgery. I’m pretty ready to get this show on the road. I’m not sure how much time will lapse between now and actually going in for surgery, but I’m hoping it will be before the summer weather hits. Who wants to be recovering and sweating their ass off at the same time?

I’m tired, my neck is stiff, and I of course have a headache. But I am relieved.

Leg Cramps

So yesterday I was talking about how every time I get the Benlysta infusions, I get leg cramps. Well, I realized that it’s actually the steroids I receive with the Benlysta that cramp up my legs. I get Solumedrol, which I read last night that it depleats your potassium and in turn causes the leg cramps. So last night, I drank some juice before bed that has potassium in it (Silk fruit and protein, yum, be careful of the sugar though), and boom, no more leg cramps.

Benlysta #3

Nothing too out-of-the-ordinary to write here today. The infusion went as the others have. It made my arm cold. I had a gross taste in my mouth from the IV steroids. I got tired of sitting after a while.

While I was in the car I spent the whole trip there lying down. I didn’t want to have a headache from the time I got there. I got an ass cramp from it.

I have the leg cramps now just like I did the last 2 times. I think it’s a side effect of the Benlysta, although I’m not entirely sure. They start before I leave the clinic so I know it’s not just from riding in the car.

Neurosurgeon consult is Thursday. After I meet with him, I want to start meeting with a Neurosurgeon that is in my network. My Rheumy said she has no problem referring me, so that makes things easier. But I’m going to the NS outside of my network that I was referred to because I feel like my headaches are suddenly urgent, and I just need to start investigating now, and not wait til I get approved to go see someone else. It has been ridiculous this week. It’s different than what I usually experience. I guess I kinda talked about that already.