Tonight’s thought

To enjoy today, you have to forget yesterday’s pain, but what if today’s pain isn’t any different? What if you know tomorrow’s pain will be the same? When can you enjoy? How do you carry on, knowing that every single minute of every single day in your future will be full of pain?

Advertisements

Life goes on

For so many months I have had random thoughts about what my next blog should be about, but nothing ever seemed important enough to share. My life isn’t any different than when I started sharing with you. None of the treatments have been successful, so my pain is still the same.

I wish I had positive news to report, but I am afraid I’m starting to bore you with my complaining. I don’t really feel all that comfortable to let you know how much it sucks to live life in my body.

This whole blog thing was an experiment to see if it would help me in any way, but I think it made me more conscious of the pain, which is not something I enjoy. I also feel like it makes it seem like I’m this miserable person, and I don’t think I am. I have accepted my condition, even though I don’t like it, and I don’t want it, it makes it easier to navigate through every day, because I’m not consumed by self pity, or I don’t question “why me?”, ever. I understand life is tough, I understand shit happens, and I know that I have to choose to be happy to stay alive.

I’ll stop by on occasion, and I may share again sooner or later. Until then.

Triggers

Most of the time when I see a new doctor, or I see discussions about headaches, the question about triggers comes up.

My daily trigger is waking up. As long as I wake up, I’ll have a headache. It’s a given, and it never fails. I have woken up without a headache, literally, zero times in 20 years.

Over the years I’ve taken notice of some of the most common things to increase my daily headache, and they include, but are not limited to: crying; laughing; loud noise; repetitive sounds; light; watching a movie; going to the bathroom; climbing a flight of stairs; walking up the street; large crowds; stressful situations; making love; riding a bicycle; drinking cold drinks; alcohol; menstrual cycle; rapid images; dancing; feeling hot; feeling cold; being startled; doctor appointments; studying; being hungry; overeat; dehydration; too much sleep; not enough sleep; body aches; bending down; standing up; fatigue; traveling; whistling sounds; dentist visits; getting my hair done at a salon; massages; taking a nap; strong, foreign smells; raising my voice; working out; and often there’s no reason whatsoever.

As you can imagine, most doctors can’t wait to get rid of me. They don’t know where to start.

Lost Hope

The best thing that I did for myself, was letting go of hope. Hope was debilitating. Each time I hoped, I was disappointed. The disappointment sometimes would be so huge, that it would take months to get out of the hole I felt I landed in.

It’s a popular saying… “Don’t lose hope”, but I recommend the opposite when you’re dealing with chronic pain. Hope doesn’t do you any good when you’re constantly reminded that the pain is here to stay. Hope is an illusion that you will get better, while knowing in the back of your head that’s unlikely to ever happen.

When I quit hoping, I was able to accept, and move on with my life as is. I can now enjoy the time with my family without being consumed by this fairytale dream.

I still look for relief. I still receive treatment, because I’m too stubborn to just give up, but I’m realistic in my expectations. When a treatment doesn’t work now, I just move on to the next, without being hugely disappointed.

Losing hope saved my sanity.

Depakote

Even though I haven’t had much success with the depakote IV ‘s so far, the neurologist and I have decided to start taking a daily oral low dose. But not after extensive warnings and reassurances that I can ABSOLUTELY NOT get pregnant! The chance of devastating birth defects are guaranteed while taking this medication. Luckily I have no plans whatsoever to have more children, and we take plenty precautions 😉

The neurologist also has me scheduled for a Neuropsychology evaluation at the hospital in July. It is a 3 hour long exam to test my memory and stuff. I’ll keep you posted on that.

“Neuropsychological tests are specifically designed tasks used to measure a psychological function known to be linked to a particular brain structure or pathway. Tests are used for research into brain function and in a clinical setting for the diagnosis of deficits.”

Memory

I’ve been busy lately, hence the lack of posting blogs.

For the last couple of months, or maybe a little longer, I’ve been noticing my memory isn’t what it used to be! I’m only 37 so I can’t really blame it on aging. Here and there I became aware of things I totally forgot about saying or doing. Now I don’t even argue with my husband anymore when he says “I already told you!” because maybe he did…

Yesterday, early afternoon, I was putting away laundry in my daughter’s room, and I realized I didn’t remember which clothes they were wearing to school. Usually I lay their outfits ready the night before, so in the morning there are no delays, but I knew I didn’t do that this time. I was breaking my head over it, and I couldn’t recall handing them clothes that morning. It actually crossed my mind for a second that maybe they went to school in the pajamas! In the end I decided they must’ve picked out their own outfits.

After school, when I saw them walking down the street from the bus stop, I saw their clothes, and recognized them immediately as the ones I GAVE THEM in the morning! Why did I not remember this??? It’s starting to scare me. I’m not on any medication.

Last time something like this happened, I was on a new med, and I did discontinue taking it shortly after because I was losing my mind. Now I don’t know what to change!

Next week I’ll my seeing my neurologist, so I’ll definitely address this.

Tsunami

I don’t even know where to start anymore. I’ve had so much pain to deal with lately. Physical pain. I don’t know why, or what triggered my more-than-usual headache, but it’s been brutal. It has been raining a ton lately, which is not normal for Southern California, so I don’t know if that contributed, but regardless it sucks.

A few weeks ago I was at work and I sat at my bench for a while, and then when I got up from my chair, I almost fell over! The sensation I felt in my head was like an earthquake, followed by a giant wave, and destruction. My coworker watched me grab onto the desk next to me and asked if I was okay, and all I could say was “I just had a tsunami in my head!”

On Thursday I went to court for observation for a volunteer position I’m training for, and the overload of information and stimuli gave me a horrible headache, but instead of going home and rest, I went to Target to buy stuff, to the grocery store to buy food, went home and did laundry, picked up the kids from school, helped them with homework, prepared a very nice, healthy, stir-fry with a bunch of hand-cut veggies, cleaned up the kitchen after dinner and put my husband’s portion in the microwave, since he was running late from work. Shortly after he got home, I crashed in the couch and wasn’t able to move anymore. When I finally decided to get up and go to bed, around 10 pm, my husband made a comment about not leaving him behind downstairs, and I got pissed that I had to remind him of my horrible headache! That aggravation pushed me over the edge, and then my knee gave out and I couldn’t walk anymore, so I started hyperventilating and crying, and I only made it up a couple of steps on the stairs, and then I collapsed! On a pain scale from 1 to 10 my headache was a 10! I couldn’t move for quite a while and I asked my husband for an ice pack and to turn off all the lights. I really had to focus on my breathing and calm myself down. After about 15 to 20 minutes, I crawled up the rest of the stairs. With support of my husband I was able to go to the restroom before I laid down in bed. Any movement made my headache unbearable. I was given an Oxycodone to fall asleep, but because I get itchy from any narcotics, I was only able to sleep until about 2 am and then the itchiness kept me awake. I went to the volunteer training again the next morning from 9 to 12 and halfway through training I took 4 ibuprofens to relief some of my headache symptoms, but they didn’t even scratch the surface.  I was supposed to go to work right after training. While I was driving I decided it was too dangerous for me to be driving, because my head felt like a plasma ball! You know where you have those currents run to the edge of the globe when you touch it and you can see the pretty colors, and “electricity”…. That’s exactly the experience I was feeling!

plasma ball.png(internet image)

I just came home and went to bed!! I slept most of the rest of the day. Only got up to pick up the kids and wait for my husband to get home to take over from me, and I went back to bed. Now it’s Monday and I still feel like I’m recovering from that extreme episode!

I have another busy couple of weeks coming up though, so I hope this pain will become more bearable!

Everyday’s a battle

And today I lost the battle, but I’m not ready to lose the war.

I’ve been in bed most of the day so far. My headache is outrageous. I took 1,000 mg of ibuprofen, and that made the pain slightly more bearable, but I still can’t function normally.

Thank goodness my kids are amazing. They’ve been quietly entertaining themselves all day. I made them some lunch, but that’s as useful as I got. This was the last day of the holiday break from school that I have with them, and I’d planned to take them somewhere fun, but the pain decided differently. I’m just glad I didn’t promise the kids anything beforehand. I guess I’ve learned my lesson on that one.

I hate this. Hate isn’t even the correct term… I despise, maybe? I don’t know, but I just want to live my life happily, and give my kids the attention they deserve.

Excuses

You see it all the time, everywhere they sell workout gear “NO EXCUSES”.

Is pain an excuse? I’m not talking about the muscle aches, or the pain you feel from exhausting yourself while working out, but the pain you already endure before you even start doing anything at all. The pain that makes you want to crawl in bed and pull the covers over your head. The pain that only gets more intense with every increase of your heart rate. Is that a valid excuse? Sometimes I think maybe I should quit using that excuse, but then as soon as I do any physical activity, my headache reminds me of my damn “excuse”…

I need to lose weight, I really do. I feel that less pounds will help my knee feel better. I just don’t know how! I have cut soda already for a while, I don’t eat that much, and I cook fairly healthy almost ever day. I hate fast food! I am addicted to sugar though. I love it. I can work on that…

To all the chronic pain warriors out there: What have you done to lose weight, while being in pain 24/7? I need some guidance.

No getting used to

I hear it often “Oh you must be used to the headache… you must be used to the pain….”

NO. I. AM. NOT. I cannot get used to it. I have been trying to figure out how I can live like this? How is it possible to be in pain 24/7 for over 19 years?! I DON’T KNOW! It really baffles me… sometimes I think maybe it used to be less severe, but no, then I remember, it always sucked big time, and it still does. The pain doesn’t get easier to bear. It does feel familiar, but it isn’t like it’s the welcomed guest at the party!

I have been trying this new medication for over a month now, but it hasn’t made a difference. I should give it at least 6 weeks according to the neurologist, and I will, but it’s not looking promising. On Monday I’m going in to get a Magnesium IV drip. We’ll see how that goes…

Sometimes I wonder what life would be like without pain. It’s not something I remember, so it’s hard to phantom, and to be honest it scares me a bit. I don’t know why though. Maybe it’s because people in general tend to be scared of the unknown? It’s crazy thinking…  I know I’ll never experience life without pain, and that’s okay. I don’t want to be greedy… just one less pain will do. If it could only be this headache!