(I wrote this a long time ago… but thought it was pretty appropriate, being that I’m going to a new lab, and don’t know which phlebotomist I’m going to have… and if they’ll be cooperative with my absolutely awful veins!)

Needle sticking into warm pale flesh
She shakes her head and pulls it out, only to try again.
She looks at my arms, my wrists, my hands
All of the scars from previous painful episodes
Other trips to this place
Other people sticking my now very scarred flesh.

I wish I could do this myself

“That vein rolls,” I say
As he tries anyway
And Blood SPRAYS over my new jeans.

“I told you I knew what I was talking about,” I say
In my raised aquired advocate voice.
His eyebrows raise
As I point to the next spot to try…
Near one of my previous scars

Scars from experiences in this place- mental and physical

He listens.
And attempts again.
And I watch the backflow of warm blood with a smile.
His eyes match mine, and he smiles.
And I smile back and thank him for listening.

He has no idea what’s going on, did a punch to get a culture, got nothing in the aspirate, and used that to culture. Well, of course nothing’s going to come back…

Just that very morning, I had seen something white draining from that same cuticle.

Then, he takes me off the meds (monday) that were keeping me comfy and did some bloodwork, including an ANA and an ENA.

I can’t imagine how any lab would declare a “positive result” with an ANA of 1:8, as what I’ve read since then is that anything under a 1:40 should be negative. So, great, I paid for that.

But he wouldn’t give me the full lab tests, saying they hadn’t all come back yet.

He’s over his head, and wants to get rid of me to a rheumatologist. Meanwhile, my hands turned red by weds, and I was in pain, and they were tingly after stopping the steroid/antifungal that my internal med doc put me on.

I believe the dx of the internal med doc now, especially since his wife is a derm, and he asked her for a second opinion. Still, now I just want to get the records and move onto a new dermatologist.

He also asked me if I had been getting increased headaches.

Me: No, additional Migraines

Him: So that’s a yes.

Me: No. Migraines are a GENETIC NEUROLOGICAL DISEASE. A HEADACHE IS NOT. I don’t get headaches. I get MIGRAINES.

Him: Can you take tylenol or advil for this

I explained Rebound Headache, and said that I could only do NSAIDS 2 days in a row.

And then, I got another shocker.

Him: “I don’t give out pain meds.”

Me: “I don’t WANT pain meds. They make you sleep, not feel right, and besides, I have them at home if I wanted. I wouldn’t be coming down here to see you, and I hope that you don’t treat all of your patients like me that way. It’s insulting.

(this would have been a good time for him to say “I’m sorry.”)

Then, he said we’d do prednisone- (without giving me a chance to say a word) and I looked at him, eyes wide- and said “No. Not over my dead body, ‘cause that’s what you’re going to do to me with that crap. I don’t sleep on it, I go hyper manic, and I’m have depression, so that’s a neat trick. Not to mention the fact that it causes my head to go nuts ‘cause I’m up 24 hrs/ day.”

I said that I could ONLY do oral dexamethasone. He kept using the brand name (I swear, to confuse me.) and saying he wasn’t comfy with Decadron, for x, y, z, reason. I answered it with the medical knowledge about what he was concerned about- toxicity. He almost had a you know what fit. But, he wrote the Rx.

And concluded with -first- a- referral to rheumy. So much I could have said, but didn’t know yet on that front… and a restatement of “I don’t do pain meds, so this is it.”

Yes, dear sir. This is it. To Ratemydoctor, I go.

Comments?

I’ve been on steroid cream 2x/daily, which is messing with my Migraines. The first time I went back to him and told him the side effects that I was having, he was dismissive completely. Thus, I wrote the previous post.

I held my own. :) Went down there after having a horrible Migraine, and having to take zofran IM. I looked awful, I know.

Told the doctor that I was getting dehydrated, and something had to change. We had to get me off the steroid cremes, as I was going to land in the hospital soon enough.

So, he Rxed an anti fungal to be used once/day and to stay on the (uggh) steroid creme 1x/day. I could have protested, but honestly, I was SO tired that it just didn’t matter anymore.

I asked for the culture and susceptibility test… He said that he couldn’t do it, as it was far under the nail, he thought (married to a dermatologist, so I guess I technically had a second opinion)…and they might have to remove the nail to do it. I said that was fine, and I’d try the anti-fungal. He didn’t think it would work topically, as it doesn’t for like 99% of people.

I’m not in the 99% of people. I get weird side effects. Things work for me that don’t for others…I have to advocate for myself. I said that if there was a chance, I’d try it. He shrugged, and I could almost see him rolling his eyes as he said it, “I guess the dermatologist is going to ask if you’d tried it… may as well be able to say yes and that it failed.”

Except it didn’t fail.

I put my first dose of the anti-fungal cream on, and about two hours later, I felt a (good) pop, and draining- not pus- but that fungal stuff I’d seen before in limited quantities on occasion. I moved my fingers, and the pressure had stopped for a bit.

More on this whole saga on Monday. I was able to get a referral to the dermatology clinic for Monday morning. I’m sick of this… and yet, it’s another person I get to explain about my overly active neurologic system and the Migraines that plague me and influence treatments sometimes

Meh. I enjoy that about as much as shopping for cat litter.

Rant?

2. I’ve never had such a bad run of Migraines now that I’m relatively controlled without triggers, and I can identify a clear trigger other than the weather, which can’t be helped. I find that my sleep schedule is being tossed off. I have to be careful with my use of steroid… I use dexamethasone when needed injected into my neck

3. I want a culture to know what the heck we’re dealing with. I’m tired of doctors guessing.

4. I want a susceptibility test- where it’s cultured and exposed to various agents, and you get back a list of what is going to work on this. That way again,we know what’s going to work, and not to play the guessing game.

5. I’d assume that you’d agree to this, as it takes the guesswork out of things, and while you may be the best diagnostician in the world, Medicine is best practiced when we can take any degree of error out of the equation. Also, that way, if one agent on the list doesn’t work, or it doesn’t agree with me, we have a second, and a third option.

6. There’s no sense in not using the best tools we have out there. Thus, the culture and susceptibility test are tools in YOUR pocket in treating me. I can’t imagine why either of these lab tests would be threatening. Can you tell me why you don’t want to do them?

Perhaps not everything rings true in every story, but I’ve found that, while reading enough stories, we all have something in common. Or many things in common.

Sometimes I see myself, like I was staring in a mirror, and other times, I point to a specific sentence and find myself nodding with enough ferocity that anyone watching me would wonder if it was a specific exercise that I was doing for my neck.

Either way, here’s a brave person stepping out to describe what we tend to hide from other people for many reasons- either to protect them from the disease, or to not alienate someone who might be turned off by the constellation of symptoms and- especially talk of bodily fluids- which, i’m very sorry to say, is part of Migraine for many of us.

Brava, Julie. And thank you.

My best friend is about to come home from work at the end of the day. I’ve been sleeping, and nauseous all day… the Migraine Monster did attack and wiped out one.

He’s going to have done the errand that I needed to do today… but yet again, he’s going to have to pick up my slack… and I feel badly. But I don’t think that the supermarket is the best place to puke…

He holds me gently when he knows I hurt, and if I cry, wipes tears from my eyes. He doesn’t mind me being clingy when I’m in pain, despite the fact that he’s not into the “clingyness” thing.

My husband is my best friend. He’s spent hours in the ER with me, hunched in a chair. Learned how to inject me with my IM zofran, even though he desperately was adverse to, or afraid of, hurting me. The first time he said he would try, I almost cried from joy. And the minor pain was the best thing that I had ever experienced… and the relief- doubly spectacular.

He’s changed icepacks in the middle of the night, despite being in a dead sleep. Wiped me off when I was “icky.” and couldn’t do for myself.

I’m really lucky. As I squint through my Migrainey eyes and write this post, I feel nothing but warm and fuzzy thoughts, and I can’t wait to see him.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Prompt: Migraine Awareness Month #14: “Live Long, and Prosper.” Come up with a short, simple phrase or sentence that could be used when saying “Hello” or “Good-bye” that expresses your wishes for fellow Migraineurs.

I choose “Hakuna Matata” - ‘cause if you’ve ever seen the Lion King, “it means no worries, for the rest of your days… it’s your problem free, philosophy….”

See, I’d want to wish someone to have the best day possible, as pain free as possible, and as problem free as possible, but it’s so hard to have one word mean all of that.

However, there are already a clear provided examples of this linguistic challenge! (Ironically), they can be found in the languages of the Middle East… where both Arabic and Hebrew have managed to create such a concept.

And if “Shalom” in Hebrew can mean “hello,” “goodbye,” and “peace,…”

I’ll say Hakuna Matata.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Prompt: What do you think the biggest myth or misconception about migraine is?

= “ALL MIGRAINEURS….” just blankly.All Migraineurs. Let me explain!

I have Migraine disease. My friend has Migraine disease. My other friend has Migraine disease. Her friend… ad nauseum.

We’re not the same. We all take different medications. We all have different triggers. What works for one of us doesn’t work for all of us.

One of us may have chronic Migraines (15+ days/month), and another, episodic. (14 or less/month)

I get severe nausea and use injectible zofran to keep me from losing meals… or dry heaving. Other Migraineurs don’t have the nausea as badly as I do… and some have it worse, I’m sure.

My Migraines are mostly on the right side. Another persons may be mostly left sided.

I respond to Amerge and Frova, and Imitrex makes me have heart palpitations. Likewise, others may have opposing reactions. And yet other Migraineurs— namely Hemiplegic and Basiliar Migraineurs can’t use triptans at all.

Excedrin Migraine does nothing for me. For others, the recall of the medication is a nightmare

Yet, we’re all Migraineurs. We all deal with this disease. It may affect our lives differently, and to various states of incapacity, but we all deal with the possibility that things may change, that meds may stop working, that research dollars allocated to Migraine is not compenserate with ou numbers.

We all live in submarines… but perhaps not the same yellow submarine.

My coffee table contents

danathepaina:

duessa:

Ditto.