Doctor Sherlock.

My posts haven’t had the ‘smartass zing’ lately that they’ve had in the past. I guess sometimes this shit just ain’t funny.

Anyhoo…I’ve written a few posts regarding potassium and how the solu medrol causes low potassium. I’ve been having some symptoms lately that have really had me “by the balls”, like chest pains, shortness of breath, and REALLY bad heart palpitations that were all easily caused just by moving around to much. I’ve been a couch potato lately and it’s making me nuts. I have an appointment with my cardiologist just to check things out, but I really think I have a deficiency of some kind.

I contemplated going to the ER on Friday for it, but the risks of going to the ER outweighed the benefits. I didn’t want to go to the ER for something that isn’t necessarily an emergency and catch the flu virus while I was there or that lovely new stomach bug going around. Last time I had a virus I was in the hospital for 5 days. I definitely don’t want to do that again. So I decided that I wasn’t going to go unless it was an absolute emergency.

So I’ve been trying to make myself feel better by eating a potassium-rich diet, but only getting a little relief. It occurred to me this morning that I could be having more than one nutrient deficiency, and after having a vitamin drink mix, I realized I was right. After researching my symptoms I determined I’m most likely having a folic acid/b12 deficiency. Luckily, I have a prescription for this supplement still around from when I was taking it with methotrexate.

I took the supplement today, and while I don’t feel 100%, I feel a noticeable difference. I am not a doctor, so I obviously cannot diagnose myself, but I am sometimes able to narrow down what the problem is so I don’t have to run to the doctor every 5 minutes. I’m not a person who goes to the doctor for every little thing. I spend so much time there as it is that I just don’t want to go unless I have to.

There are quite a few different causes of a folic/B12 deficiency, some even auto-immune, so I am not at all surprised that I could be having a problem with it. A B12 deficiency is sometimes called pernicious anemia, and if I had to guess, this is what I think my problem is. It would explain the scary weight loss I’ve been worried about, loss of appetite, stomach aches after eating, and all the chest pain/heart palpitations/breathlessness I’ve been having.

All this time my doctor and I just thought I was having crappy side effects. I plan on calling her to let her know what I think is going on. It will be interesting to see if I’m right.

Support groups and their annoyances.

If you’re a sick person and active on social media, there’s no doubt that you’re a member of a facebook support group for your illness. I’m a member of quite a few of them, and sometimes ask or answer questions.

There are a lot of occasions where I feel like I get annoyed with people rather than have my question answered. I’m not quite sure why. Perhaps I should leave my questions for my doctor to answer rather than a perfect stranger, but when you have a strange symptom or just want to vent, you don’t really want to be calling your doctor every 5 minutes, so you resort to asking other sick people. But I always walk away feeling judged on these groups.

I asked a question about chiari, and happened to metion that xanax has helped my headaches tremendously for some mysterious reason, and a person felt the need to tell me to “be careful because xanax is VERY addictive.” I’m not sure why they felt the need to tell me that, not to mention the fact that I’m pretty sure they are wrong. Just because people abuse xanax doesn’t mean it’s addictive(although I’ve read about physical dependence, which is different than addiction). And it doesn’t mean I plan on abusing it any time soon. I take it to alleviate side effects from Solumedrol, which feel similar to anxiety, and I happened to notice it helps my headaches, so much so that I’ve gotten some of my life back. So just chill the fuck out on your “information”. I feel judged because I admitted taking xanax, which seems to have a bad reputation. I don’t abuse it, and I take it for legitimate issues, which a lot of people do.

Yesterday I posted a lupus question about sudden weight loss and if it could be related to my benlysta infusions. I didn’t get my question answered, and that’s ok, it was a shot in the dark. But I got bombarded with a bunch of replies from overweight people talking about how they wish they could lose weight. That’s all fine and good, but they missed my point. I’m skinny to begin with. It’s scary to me when I lose weight. I’ve been worried about it and trying to eat more calories for weeks, so far with no results. To have a bunch of people commenting saying they wish they had that problem is really insulting to me. Skinny girls get picked on for their weight too, you know. How would you like it of a stranger came up to you and poked you in the ribs and said “Don’t you ever eat anything?”

Yes I do. I’m sick, dipshit.

And no disrespect to people who have troubles with being overweight, especially when you’re sick. I am not belittling your issue, I am just tired of people belittling my issue. I know it’s a battle, as is my issue with putting and keeping on weight. I’m unable to exercise the way I want to, which could be responsible for my weight loss, because I’ve lost so much muscle mass from not working out.

Addison’s disease can cause weight loss (which I don’t believe is the cause of mine at the moment) and it can also cause people’s skin to become extremely tan for no reason.(remember JFK and how everyone commented on his golden skin? Yup, Addison’s) I’ve actually seen a tweet from a girl who is studying to become a nurse that actually said something to the effect of “Addison’s disease makes you skinny and tan, I want that disease.”

It can also kill you too, dumbass. I shutter to think that you are going to be working in a hospital.

I expect these ignorant things from healthy people, but not from sick people. I thought they were more open-minded than this. My point is, just be careful. No sense in having your feelings hurt by a total stranger.

And so concludes my rant for today.

Benlysta infusion #4 and stuff.

I meant to write last week but I was too tired and I couldn’t wrap my head around speaking decent English. Apologies.

Anyhoo, I did in fact receive my 4th infusion on Tuesday. I sat in the office for almost 2 hours thinking I might not get it. There was a problem with a couple pharmacies that deliver the infusions to the clinic. Even though my first 3 infusions went smoothly, there was some sudden issue with the pharmacies having incorrect insurance information. All the sudden they wanted an $1100 copay per infusion. My family and I were on the phone with these companies trying to figure out what the problem was for the whole month that went by in between my infusions, and nobody working on the other end corrected the information in the computer even though it had been given to them over the phone, so they were trying to get approval for my treatment from an insurance I didn’t have. I found out while I was at the doctor that this was what the problem was, because the RN was the one who finally got to the bottom of it. He fixed it, and pulled a few strings, and I was able to get the treatment while I was there instead of having to come back another time. So hopefully, I won’t ever have to deal with that again.

I hope all of that wasn’t too jumbled and run-on. I’m so tired right now.

The infusion itself went ok. They gave me solumedrol again but it will probably be the last time since I’m having crappy side effects from it. Thursday night I was up from 4am til 7 am because I was itching like crazy. The night before that I was up because of leg cramps. I’ve been getting muscle aches and heart palpitations. All from the solumedrol.

Over the weekend I was supposed to go to the Lupus “Cruel Mystery” awareness event in Los Angeles. I was going to blog about it and promote that entry to get my blog out there. But I couldn’t go because I woke up feeling really awful. I was so disappointed I wanted to cry. I was so tired, when I showered I had to sit on the floor halfway through because I was too tired to keep standing. I’m still worried about developing shingles, since that can cause some flu-like symptoms. I had a runny nose and cough all day but it felt more like allergies than a cold. I had shakiness and heart palpitations pretty badly too, which I later realized was because I didn’t have enough potassium in my body. Thanks for fucking up my life, solumedrol.

During the infusions I seem to run a slight fever and my face gets the lupus rash. My throat glands get sore. I basically feel like I’m in a flare while I’m sitting there. I’ve heard from other “infusees” that this can happen to them too.

My toes are still going numb, on a daily basis now. It gets so bad that I get blisters because I don’t realize my toes are rubbing together inside me shoe when I walk. The only way I’ve figured out how to get rid of the numbess is to take a hot shower. After I get out the numbness is gone but my feet ache like crazy and have a blotchy black-and-blue rash. I forgot to bring it up to  my rheumatologist when I was there last week. I was so busy worrying about getting my infusion that there were some things I forgot to discuss with her. I’ll call her this week.

I have an appointment today with my Primary Physician to get a referral to a cardiologist to make sure all my heart palpitations and stuff aren’t being caused by my Mitral Valve Prolapse. It was mild last time I had an ultrasound, but that was a long time ago (about 6 years I think) and it can be progressive. I really don’t think there will be any progression but I just want to be on the safe side and check it out.


Numbness, tingling, and other fun nerve stuff.

I have something called Raynaud’s Phenomenon, which is something quite common in people with Lupus, and it can occur randomly in healthy people as well. Simply put, it’s a sensitivity to rapid temperature change in your fingers and toes. When you go from hot to cold or the reverse, the blood vessels spasm and cause numbness, painful tingling, and discoloration. When fingers or toes get cold they go bright white, when they get hot they usually get red. I also get a bluish/black discoloration in my feet but I’m unsure if that is caused by raynaud’s or something else. I used to only get raynaud’s attacks in my toes, but now it has progressed to affect my fingers as well, and the numbness has gotten worse.

About a year ago I had a neuropathy in my toes that was unrelated to raynaud’s. My toes became permanently discolored black and blue and they were swollen and sometimes blistered. They were extremely sensitive and painful to the touch. I actually thought I had broken toes at one point and received an xray that was inconclusive. It eventually went away after a few months, but this was what tipped off my Lupus diagnosis.

I get a lot of random tingly episodes in places all over my body. My legs and arms ‘fall asleep’ all the time, my toes and fingers are tingly or numb most of the time. It’s painful to hold a cold drink or ice cream. It’s become a real daily annoyance all around.

The other night I had something new happen. I was sleeping on my right side, and I woke up from an intense burning on the skin on my hip. It was like I fell asleep on a heating pad that was too hot times ten. I rolled over to my other side and fell back to sleep, but I didn’t get the burning on my other hip. I remember the right side hurting when I touched it. That day, my hip wasn’t burning anymore, but it was tingly, and it would get ‘warm’ as if it was about to start burning. It was still a little sensitive to touch, but no rash or anything like that.

I had rampant chicken pox when I was about 3 years old. It was so bad that I remember most of what happened. My brother had it pretty bad too. We had them everywhere, even in our mouths and under our fingernailsWe even went to the doctor because my mom was afraid they were going to end up in our lungs. Luckily they didn’t

Anyway, I told you that story because I was worried all day that my hip burning could be shingles. Most people probably assume shingles is something old people get. It’s something people with suppressed immune systems get, which yes, includes old people. But in my case, since I’m on medicines that suppress my immune system because it wants to attack me, and since I’ve had the chicken pox, I could potentially end up with shingles at some point.

The Chicken pox virus never leaves your body. It simply becomes ‘dormant’ or inactive in your nervous system. When your immune system gets compromised, the virus can manifest itself again as shingles, causing burning, itching, skin rashes and blistering, and sometimes nerve damage. It can also cause flu-like symptoms.

So far there’s no rash or anything visible. Right now it doesn’t burn or tingle, but I feel a ‘phantom tingle’ which is kind of weird. I’m in to see the doctor tomorrow and I’ll bring it up. I hope it’s just some weird random nerve thing that will just go away on its own.

I can’t forget that I have a syrinx from my chiari. Even though it’s itty bitty, it must be responsible for at least a little of the numbness and tingling I get.

Lupus is such a prick.

Tweak tweak.

There goes my back. I fell asleep last night in some twisted-up position, which I tend to do when my glutes are in a hot spasm, and I managed to pull a muscle in the middle of my back. When I breathe in it feels like someone punched me. I can only sleep on my sides because of the Chiari, but my ass doesn’t much like it, so I twist my lower half to deal with it, and now my back is mad at me.

All bitching aside,

About a year ago I went to a chiropractor’s presentation on trigger point therapy, and he said “There is no such thing as sleeping funny.” I strongly disagree, especially if you have chronic pain. It was a good presentation despite that tidbit, although I can’t say I’m a believer in chiropractors generally speaking.

There’s something to be said about trigger point therapy though. It really does help. If you’re not familiar with it, it’s basically treating a muscle spasm by pushing your thumb into it firmly, rather than massaging it. You have to be careful not to bruise yourself or the person you’re working on. Do some research before you try it to make sure you are doing it the right way.

Unfortunately, I’ve become pretty sensitive to any type of muscle manipulation. I was getting massage therapy for a pretty long time, but my muscles have become weak from hurting too much to exercise (and from the fact that I produce very little testosterone), and it just hurts or feels “weird tingly” when anyone touches me. It’s also become a problem because my Chiari headaches have gotten worse, and anything that increases blood flow to my neck and upper back just makes my head pound. Kind of a bummer, since massage was a huge stress-reliever for me. I’ll get back to it at some point, hopefully this year.




Why I blog.

I don’t really have anything too important to write about right now, but I feel like writing, so I might as well. I was always told by my teachers in grade school that I’m a good writer. Funny, because I hated it. I hated how hard I had to concentrate on a subject I didn’t care about. I hated how I had to pretend to care about it. Most of all, I hated not being able to write about what I wanted to write about, the way I wanted to write it. I always had to follow someone else’s standards. Then something amazing happened. I graduated, and I discovered I actually like writing, especially since I am now free to write about anything I want.

Anyhoo, I originally wanted to start youtube vlogs, mostly of me talking about the same things I write about now, but it wasn’t a good fit for me. For starters, I’m camera shy. I have some short-term memory trouble and I was always feeling like I had to write a script of sorts just to remember what I wanted to talk about. I lose my train of thought and forget words I’m looking for. I figured if I was going to write it down first, might as well just keep a written blog instead. Vlogs take a lot of energy out of me and I felt like it wasn’t something I would be able to do regularly. And who wants to be on camera when they feel like shit? 

I hope at some point to return to the youtube world, and I do plan on making videos occasionally. There’s a Lupus convention in Los Angeles  coming up soon. I would like to get some footage from it if cameras are allowed. If not, I will most likely blog about it.

A strange thing about me I suppose is I don’t do a lot of blog reading. I occasionally read other blogs but I have a terrible focus issue and reading is a pain in the ass for me sometimes. Writing is different though. It just flows.

Aside from enjoying writing as a hobby, I think it’s important for the world to know what it’s like to be a sick person. Whether you’re sick yourself, or just a curious healthy person, I think a big part of raising awareness is getting other people to imagine themselves in your shoes. It helps eliminate the ignorant attitude that people have towards anyone with a health issue, especially the “you can’t be that sick” and the “s/he just wants attention” shit that people gossip about behind your back. I can’t be sure that people like that are reading my blog but I can hope for it. I hope I can make someone more open-minded. I also hope that I can help people realize that I’m just as human as the next guy, and that sickness can happen to your average Schmoe, and that I’m just as good a friend as you’ll ever find, even though I might be too tired/sore/sick to be present some days, I try my ass off.