drugs, drugs, drugs

Originally posted on Brain Storm:

Catchy, but a bit oversimplified. I think I knew this even in the 80s. Now I can’t even get clear cut answers from my fantastic cutting-edge brain scientist doctor, let alone mom and dad.

It seems that us chronic painers have endless decisions to make about drugs, and not usually easy ones. While having access to a plethora of medical options is certainly something to be grateful for, it’s sometimes a catch-22. Often the only method to weigh potential negative side effects with potential benefits is to just try a drug, and often this goes badly. With off-label this, new trial that, and drugs to counter the side effects of other drugs, some of us end up with meds coming out of our ears, and consequently, more health problems than we started with. After being burned by narcotics and triptans that (unbeknownst at the time to my GP and me) dragged me…

View original 700 more words

on ups and downs

This is a re-blog about the migraine-sads, but I suspect the overlap with fibro-sads are infinite. Please read and share your strategies!

***

er… but mostly downs.

Image

[illustration by Emiliano Ponzi: http://www.emilianoponzi.com]

 

Every person has ups and downs. It’s a fact of life. Only Data doesn’t have to worry about these things, and he worries about not having to worry about these things.

Image

 

Chronic pain is just one of many unexpected twists that can make ups and downs so much more dramatic.

There’s some sort of chemical storm, which other migraineurs have described to me as acute depression, that comes (for me) with the onset of attacks and without any other external triggers (like, no pets have died, the world is still spinning, and I don’t have my period). But it’s still damn real! Add the acute depression to the long road of grieving for lost abilities, and you’ve got a recipe for the sads.

 

Image

It goes like this:

migraine attack –> low feelings (despite lollipops and sunshine) –> feeling low about inability to appreciate all the good stuff –> feeling low about how migraine has changed my life –> dwelling in loss –> more pain –> slow recovery –> repeat.

Essentially, it’s just so easy to get down on myself for being down in the first place. But despite sometimes feeling just as sad as that kitty looks, there are two handy shovels I’ve found for digging myself, at least part way, out of the pit of despair.

1) Other people with chronic pain.

They get it. All I have to do is talk to them to know I’m not nutso, that they feel it too, and sometimes that’s enough to stop the self-flagellation. Talking to these people in person is really best, but even a short internet message to share the sads can make a pretty big difference.

2) A bit of research.

It’s pretty well understood now in the medical community that chronic painers are more at risk for things like anxiety and depression, as demonstrated by studies like this, and this, and this, and this one. And perhaps not coincidentally, one of the first lines of defence in terms of daily preventative treatment is amitriptyline: an antidepressant.

It’s helpful to remind myself, as many times as it takes, that feeling low is not some sort of personal failure; it’s a part of life, and a BIG part of life with chronic pain, and sometimes this thought alone is enough to lighten the load.

What do you do, dear readers, when pain drags you down?

Brain Storm

(lousong.wordpress.com)

20140607-023306-9186517.jpg

When Your Worst Is Really Your Best

I always seem to forget how truly amazing I can be. I’m sure you all do the same. It’s so easy to feel the pain and fatigue deep in your bones and lose sight of how strong you really are.

Today was a pretty typical day. Worked last night (pediatric respiratory therapist) and dragged butt all night long. Gave report this morning semi-coherent thanks to a ridiculous amount of caffeine. Had to stay over for an educational inservice on new equipment. Went home and fought to sleep, even though I was exhausted, due to my pain level and running brain. Finally fell asleep, hallelujah!

Got up and then immediately started mommy world. I had to get snacks, go to the potty with the kids, referee arguments, soothe stubbed toes and hurt feelings, teach the fine art of sharing, and work out a “what show will be watch” compromise. Thank god (and my in-laws!) for my Keurig! Even so, I had that bone-deep fatigue that gnaws at you.

Everyone started coming home/to visit/to spend the night and my house went from zoo to Grand Central Station noise level. I can’t handle that as well as I used to. With fibro, I get more overstimulated than a sugared-up three year old at DisneyWorld. My pain increased, fatigue increased, and irritation increased.

Add to that chaos cooking dinner, kid bath time, and the overtired kiddos becoming more and more whiny with each passing second. I was pretty much feeling the same way. Finally got the kids in bed despite much stalling! I was full scale finished. Everything aching, especially my traitor back, and feeling like I hadn’t slept in a week. Misery courtesy of fibro, CFS, a bad back, night shift, and motherhood!

I started to get annoyed at myself for not handling my day well. It wasn’t until my sister-in-law pointed out that I accomplished a whole lot more than I felt like I had. The night at work may have been very long and exhausting, but I accomplished quite a bit and had a full patient assignment. I just got a promotion and have been actually keeping up well! I also made it through report without dozing off mid-sentence. That definitely feels like winning. I picked my daughter up from the sitter across town after working 13 hours and didn’t feel so tired that I was essentially driving impaired. Can I get a woo hoo?

I got a short nap in and then functioned mostly like any other mom in the world would, despite my health issues. I got things accomplished, answered work emails, and snuggled with the tiny humans. Not too shabby! I was tired but still helped build a racetrack and braided my daughter’s hair for bed. We made it through playing in the front yard, allergy medicine for the small ones, and a few temper tantrums.

These are all things that healthy people take for granted and we have to work much harder for. The greatest thing about us is that we are fighters! We’re tough, and make things happen. Some days I struggle to get dressed but I do eventually. We have to think things through to save energy. We work so much harder at things than healthy people do but we just keep going. That is pretty freaking amazing!

To my fellow fibromites, know this. You are incredible! You are brave, you are strong, you are proof that people can do anything. Every single day life for us is difficult but we keep going. That is awesome. You are awesome. We are awesome. Let’s not forget that!

Take care of yourself….. and Life will follow

Originally posted on 05/24/2013

Today, is the Friday before Memorial Day weekend. My entire Family had made their plans and I thought what a great chance to go to visit my Grandma.

When I “go home” for visits I always feel so rushed and torn that I am never spending enough time with any of them. I have my Parents, my sister, my Grandma, a Great Aunt, and friends that I want to visit. Seeing as how our visits are usually from a Friday to Sunday. It makes it impossible to see everyone that I want to see.

I thought this would be a great time. I was even thinking that I have made Fibro friends that live in towns that I pass on my way down that I could ask if anyone wanted to go for a cappuccino/coffee, meet in person. I would be able to get a good stretch in and then head on my way.

I would visit for 3 days and be able to spend plenty of time with my Grandma, her Sister, a few friends, and still have time to sit down, write or even maybe relax. (I may have to be reminded what “relax” means again).van mom

I have been looking forward to this trip for a long time.

I hit a flare on Monday and have not been able to get rid of it. Today it decided to add a headache leading to a migraine.

I have worked every day this week (10 hours on Wed). I am taking Vicodin every 4 hours which basically takes my pain from a 10 to a 5. I have been waking up every 3 hours needing to adjust, apply ice or heat, and take another pain-killer.

I seldom stay down even with a flare. I push through them.

However, the trip is 4 1/2 hours without stops. I would need to stop a lot. In addition, my body needs these pain pills right now. I only use them when I am in a bad flare. I do not take them when I am going to drive. I take them after I arrive at my destination. I know that being in a flare can cause enough “fog” or unclear thinking leading to reaction times not being “normal”.

It was such a hard decision. I decided to stay home and to what will be a surprise to many of the readers ~ I have not yet gone to work.

I posted this on my Fibro page this week;

This is the perfecthealthy post for me right now. I am supposed to go to Illinois by myself this Friday to spend the weekend with my Grandma. I am in such a flare, pain is highest ever. I know I should stay home even tho it means missing my Grandma and that my husband and Daughter will be off on their own weekend plans. The guilt is worse than the pain sometimes. I don’t miss things, I even worked ten hours thru pain and tears because I knew my Mgr needed my help. We do need to take care of ourselves. Not always an easy choice but the right one.
Many of my FB friends posted two scenarios. They either make themselves do everything no matter how much pain and suffering they are going through at the time or they miss out on all of the family/friend events that they want so desperately to attend.

I know that I am the first example and am scared to death of becoming the second. I personally find nothing wrong with either of the choices.

I think that like everything in life I need to find a way to balance both choices.

I realize that if I don’t take care of myself and keep going I end up worse and then I am no good to anyone especially myself.

 

I continue to do everything that I can everyday to be a

Fibro Warrior ~ Living Life!

warrior

 

Patient Poetry

We meet again, as always;

Titans striding face-to-face.

Our battleground of linoleum

Long stained with tears and antiseptic.

  •  

Both so weary, bonecrushingly so,

Worn down by the inexorable tide of

Bottles and pills and politics of medicine

When it should be as simple as

Hello, how are you, how can I help you today?

  •  

We are not enemies, though at times

I thought you my mortal foe.

Behind the white coat of office–

Always the white coat, though;

What’s with the white coat?–

Is a person, either foolish or wise,

Much like myself.

  •  

And so we stride across our battleground,

The worn linoleum cracked with the horror

Scenes of a thousand nightmares gone before,

And I hear the inevitable question cross those lips:

“What am I seeing you for today?”

  •  

Did I not just tell your nurse everything five minutes ago?!

  •  

A little something I wrote up on my own blog, Honeybee Chickadee, the other day. It’d been rattling around in my head for days, and with the fibro fog I’m surprised it ever came out at all! Hah!!  {Cassandra}

5 Reasons Why Fibro Fighterz Are Badasses

1. We wage a war each day we wake up, fighting an internal battle within ourselves. Sometimes, I like to picture my body fighting back, as if there were a tribe of tiny little army men with their little weapons, *pew* *pew* *pew*. Sometimes I have to aid them in battle with a pain killer, but that’s okay. It gives them time to rest up for the next battle. Positive visualization is a wonderful tool for relieving our pain sometimes. Close your eyes, picture your pain. What does it look like to you? I’ve often visualized my pain as little ninjas with extra-sharp throwing stars. They ricochet off my muscles, and attempt to kick some serious ass. Hey, the point of this exercise is to make yourself smile. Think of your pain as something silly. It might make it hurt a little less, or at least give you a good chuckle or two, and that is worth something! Today, I visualize my pain as a pair of pissed off kittens in rainbow dresses.

file8711331498254

Quick! Emergency Kitten Will Always Make You Feel Better!

2. If nothing else, we have learned to multi-task. WELL. Despite our raging pain, we press on every day. If that isn’t BAD-ASS, I don’t know what is.

freeimage-3736087-high

3. We have quite a large network of friends. Online, offline and in-between. Talk about a huge support system! Our Fibro Friendz are there to help us through our rough times, laugh with us in our good times, a person to share our experiences with, lend their shoulders to cry on and share hugs with us when we need them. They are an extended family, one that will always be close-knit, and one that will always understand each other.

229968_3204

4. We can rock a pair of pajamas like high fashion haute couture. We have perfected the art of the “messy ponytail.” We have a slipper collection that rivals a fashion model’s shoe collection. But the best part about all that? We rock that shit with style.

3122869509_35613b4c3d_z

5.  No matter what, we NEVER GIVE UP THE FIGHT. And that, my friends, is something to be real proud of.

482046_327074747395549_336911766_n

I hate the commercial for Lyrica

I have ALWAYS hated the Lyrica commerical. To me, it looked like the woman talking about her “widespread pain” just needed a shoulder massage and a pill and VOILA! She was well again and able to take part in her lifestyle unhindered. I took Lyrica for years. It’s an expensive drug that not all insurances will cover. When my husband changed jobs (and I could no longer work), his new benefits refused to cover my Lyrica. I was looking at paying over $200 a month for it, and there was no way we could afford it. I participated in a program that provided it to me free for a year but after that, I made the decision to stop taking it altogether. I have managed better than I thought I would, and I don’t miss the 40+ lbs I was packing (when they say weight gain is a side effect, they aren’t kidding!) But not for one minute, do I think that because I decided to stop taking Lyrica, that I am superior or in some way handling my illness better than another person with FMS who takes Lyrica or any other medication. Lyrica-free is working for me, but it might not work for someone else. Fibro effects different people in different ways. I cannot judge another’s pain. If I have learned ANYTHING from this illness, it is that simple fact.

This article includes a response from Pfizer, the manufacturer of Lyrica.  Included within is a link where you can give your suggestions for a new commercial.  What would you like to see highlighted in an ad for Lyrica?

If I could do a commerical for Lyrica, I would use REAL people with FMS, telling their real stories. (The Lyrica commercial for use for diabetic nerve pain does this!) I would show someone struggling to speak when they are suffering from Fibro Fog. I would show grown people waking up in the night with pain so severe in their legs that they cry like children, while they desperately massage their limbs or lurch around their bedrooms in an effort to walk off the pain. I would show people having an “all over migraine,” lying in a darkened room, with a bucket by the bed in case they puke, and an ice pack on their head, as well as other ice packs on the pressure points that are also on fire. But, most of all, I would show the looks on the faces of their disbelieving friends and family, as well as the disparaging and condescending comments of their co-workers and supervisors.