Flare of Doom

Image: tabuherbalsmoke.com 

When you suffer from chronic pain, flares happen when the pain levels get so much worse. When you are in pain all the time, pain because the norm and it takes a lot of really stop you in your tracks.

This particular flare started on Friday. I did what I do, took the abortive I had and tried to sleep. The abortive I was using is pretty much crap, but usually it helps me sleep and that's what helps get me on the road to normal for me.

I was able to work on Saturday but was feeling pretty rough by the time my shift was over. I took a nap and felt a little better.

Sunday morning, I felt pretty rough so I stayed in bed most of the day. In the afternoon, I was feeling a little bit better so we got some food and then Todd went to the movies.

The pain started notching up pretty fast, especially after I had gotten Emily into bed. It wasn't the pain so much that my whole head, starting at my temples and going down into my nose and my jaw was throbbing with pain.

By the time Todd had gotten home from the movies, I was unable to even watch TV because the pain was so bad. I took another abortive, and Todd laid down with me in our dark bedroom until I started to feel vaguely sleepy.

I was able to sleep for about four hours. Usually when I wake up, it takes a little bit for the pain to go back up, even in the midst of a flare. Not on Sunday night / Monday morning, my whole head was screaming in pain the moment I woke up at 4 am. I took my last abortive and managed to get a few more hours sleep.

Thankfully Monday is one of my days off. I laid in bed in pretty intense pain. But I really, really didn't want to go to the ER. Going to the ER is a big old suck. Time suck, pain suck, massive suck for Todd.

So as soon as my neurologist was open, I called in. I love my neurologist and she got me a prescription for something that really worked in the past (but sadly isn't something I can take often), and my pharmacy got it ready pretty fast.

Kind, wonderful Todd went to Walmart and got the meds. I took them, ate some food and thankfully was able to sleep. When I woke up, I felt like a whole new woman. I was even well enough to talk Emily to Girl Scouts.

Today I'm still feeling a little sick. But I'm able to work and the pain is at about a 6. Before it was a 9 on its way to a 10.

Thankfully flares like this don't happen a lot. The worst part is the not being able to sleep. When I'm sleeping, it's the only time when I'm not feeling pain. Sadly, I can't avoid flares like this. This one was all weather related. We didn't get hit by the hurricane but it moved a lot of bad weather into our area. I know that's why I felt so wretched. But it's just another day in the life of someone with chronic pain.

The Med Merry Go Round

Merry go rounds were more fun as a kid

I've never done drugs of the illegal variety. A boyfriend in college wanted me to try pot - in part to see how loopy I'd get. But that never happened. The main reason I've never done illegal drugs is because the legal ones mess me up so badly.

I have a lot of drug allergies. Lots of hives and other bad reactions. I basically missed Spring Break my senior year because of being on the med merry go round and I just had something easy - the flu I think. I was woozy and really out of it because they kept changing the medicine they were treating me with.

When I was in college, I ended up in the hospital. I was home from Christmas break and it was that time of the month. I also had an upset stomach. So my mom gave me ibuprofen and Pepto Bismal. I broke out in hives from head to toe. I was so swollen that I had to wear slippers to the doctor's. He took one look at me and sent me to the hospital.

This was all before my chronic pain started. I was on the med merry go round for nine months at the beginning of my chronic headaches. In the end, nothing worked and I just found home remedies to help me.

But with the seizures, I can't not be on medicine. The first medicine that they gave me in the hospital was given to me because it was the only anti-seizure medicine that comes in IV form. But it's been making me feel really tired. So my neurologist put me on a new medicine, but I have to be on both for a bit to wean off the first stuff.

I really, really don't want to have anymore seizures so I willingly got back up on the med merry go round. And I feel like I'm on a literal merry go round. The first day I took it, I was so woozy I couldn't walk straight but my brain was really fogged up as well. I would try to talk or type and it wouldn't come out right.

That's gotten better but I'm still lurching around the house like a drunken pirate. I have a little under a week until I'm weaned off the first medicine. I hope and pray that it will make me less tired so I can get off the med merry go round.

All I want is to get back to some form of normal. I still have pain, but I'm used to that.

A Rant - The Cost of Medicines

A very expensive medicine

I have a whole host of diseases and conditions. Most of these I can manage without medicine, but a few I need my meds to be able to function. Thankfully most of my medicine is fairly cheap and doesn't become too much of a burden financially.  But I think the cost of some medicines is insane and it’s price gouging a lot of the time.  I had an experience with this lately with some new eczema medicine.

A little bit of background on my issues with eczema. I've always had dry skin since I was a kid, but I always just though it was dry skin. About six or seven years ago, my skin was so dry that I was scratching it until I bled. I tried some home remedies that didn't work so I ended up at the dermatologist’s office where I was prescribed with very bad eczema.

Many people with eczema will have a patch here or there on their bodies, but I have patches pretty much on my whole body. My upper torso is worse than my bottom. My arms and neck are always hotspots for me, but I can get patches anywhere. The only thing that works is a medicated crème.

Last week, I had to go to my yearly visit to my dermatologist to get my prescription refilled. These visits usually annoy me because the doctor usually is with me for less than five minutes with me just saying that I still have eczema and him refilling my crème. It’s usually an expensive five minutes that can cost me $60 after insurance covers some.

But this year, I saw a new doctor to the practice. He went over my symptoms and checked me out. I liked him a lot better than my normal doctor. He also prescribed me a new medicine called Protopic along with my crème. The nurse gave me some samples of the Protopic along with a $40 off coupon. That made me a little nervous about the cost.

I took my prescriptions to my local pharmacy and picked them up a few days later because the crème can take a while to be ready because it’s a compound. When the lady at the pharmacy looked up my account, she thought I might have an insurance issue because the bill was nearly $200!

After being sent to the drop off window, another pharmacy tech looked up my account and said my insurance was fine. It was just that the Protopic was $180 even after insurance. He also said in a sympathetic voice that it was just the small tube.

While the samples had worked pretty well, I wasn't about to pay $180 for a tube of something that wouldn’t last very long. I opted to get my crème and another prescription that I had refilled. The bill for those came up to $20.

I am just annoyed by the cost of that Protopic. I have to wonder what is in it that makes it so expensive, yet I have probably over $100 in free sample of the stuff. I know that I’m lucky and most of my medicine is pretty cheap but it just seems like such a racket to me.