Diary Entries for lilhannon872005

A Clarifying Run

lilhannon872005

This morning, I woke up to the sound of rain pouring down outside of my window. My first thought? I should go for a run. I put in my contacts, threw on running clothes and shoes and I indulged in a piece of the (self) forbidden fruit: running.

Throughout our lives, we have many labels; some are self-proclaimed, others are forced on us. I am a scientist, nerd, geek, student, foren [...]

Another New Diagnosis- While I've been away

lilhannon872005

Hi everyone,

So I've been away a while, I apologize for my absence. I've been busy with work and school, and more medical discoveries and doctors.

I've officially beendiagnosed with Ehler's Danlos Syndrome- a connective tissue disorder in which the body lacks collagen, which is supposed to be found in every tissue in the body. This results in many symptoms and signs, varying in degree from person to person. Just some markers of it that I have incl [...]

And now I am the not-so-proud owner of two chronic pain conditions

lilhannon872005

Hi everyone,

I met with a neurosurgeon on Thursday for my third and final opinion about whether or not I needed surgery on my neck. She agreed with the previous orthopedic surgeon that surgery is not indicated. I once again asked the terrible question, "Well, what do I do now?" Her response?

"Find a pain specialist that you're very comfortable with, because you'll probably need one the rest of your life."

Fantastic.

One of [...]

Will it ever end?

lilhannon872005

Hi everyoneI've been having a hard time organizing my thoughts and feelings lately- thus the absence of diaries, I apologize for that. I've been on doxycycline(200mg) daily for about a month and a half so far. Not that I thought it was going to work, but it's not. I feel no difference whatsoever. I've been dealing with the neck issues less and less these days. And by that I mean that I'm not coping with it well. The pain never seems to lessen unless I ta [...]

Holidaze

lilhannon872005

I always used to LOVE the holidays. Mom would put the lights on the tree, my sister, brother and I would put on our ornaments. We'd help decorate the house and my sister made TONS ofcookies. Thanksgiving was an all day affair at Grandma and Grandpa's and Christmas was either up north or down south. Family, friends, just generally a lovely time.

Then I got a headache. And things just got a little fuzzy. I don't really remember holiday [...]

A note I posted on Facebook the other day

lilhannon872005

Hi all,

I took a second to collect my thoughts the other day on facebook. Not just for me, but for my friend who has POTS, my cousin who also has POTS and a tethered cord, my friendwho has Lyme, my coworker who has cluster headaches; just for anyone who has chronic health issues/pain. Thought I'd share it with all of you.

“You’re a much tougher person than I am”

A friend said this to me the yesterday, when I was in the mid [...]

Year 5 Begins Tomorrow

lilhannon872005

Hi all,

Well, I think I instinctively knew that I'd be writing another one of these, but of course I hoped I wouldn't. Tomorrow is September 9th, marking four years of pain. Last year I did an inventory of good things, which shows you that I just had a certain level resolve at the time. I'll be honest and say that a lot of that resolve is gone. It just feels like I've been trying so hard and nothing gets better, honestly, things just get worse.&nb [...]

Irene and other

lilhannon872005

Hi guys,

Not sure how many of you out there are gonna be in the path of this hurricane but I just wanted to say I'm thinking about you all! Its hitting the coast here in Boston lateSaturday/early Sunday. Hopefully it all turns out okay.

Third round of Botox still has no effect, even though it was double the concentration. Follow up in a few weeks, hopefully not another treatment. After I'm through with this doc (very soon) I've decided to [...]

Botox Treatment #3

lilhannon872005

Hi guys

I had the third of (hopefully only) 3 Botox sessions today. Typically my doctor orders a 100 unit bottle that I pick up at the pharmacy and bring in, from which he uses the entirebottle with 40 injections. This time he decided to double the dose, to see if it would increase the effectiveness. So today I had an entire 200 unit bottle injected into my face/head/neck/shoulders. Still just the 40 injections, and the same volumes as before, but the concentrati [...]

Long awaited update/what to do

lilhannon872005

Hi everyone,

I know its been a while. I read up on the discussions still everyday but have been slacking on my diaries. Sorry for that.

On Thursday I had a Botox follow up. I have one more session (doctor doubled my units from 100 to 200) in 5 weeks and another follow up after that.

Thursday's appointment was a troubling one. I went into my doctor's office (we never go into an exam room, we just talk) and he went over my stupid diaries. [...]

Botox soon!

lilhannon872005

Hi everyone,

Everything has been the same minus one pretty cool development. If you saw my post in the Botox thread then you already know that my insurance approved full coverage of the40 injection botox treatment, to be performed 3 times over 30 weeks. My first appointment is scheduled for March 1st, I'll get my 40 injections (I hate needles by the way.... after all this and needles are the only thing that undoubtedly make me cry), follow up in 5 weeks, then have anothe [...]

A real pain in the neck

lilhannon872005

Hi everyone!

So as the title describes, I've had a little pain in the neck recently. Actually, no, not a little pain in the neck. A lot of pain in the neck. A littleover a week ago I fell in the shower, stupid I know, I'm a spaz. I bruised my shin really really bad but other than that didn't think anything of it. Until a few days later when my shoulder started to hurt. Then, that pain encroached into my neck. Soon enough, my ne [...]

And I'll find strength in Pain~ Mumford and Sons

lilhannon872005

Hi everyone!

I had another headache doc appointment last Tuesday. He's taken me off of the Methergine, since it wasn't helping, and I'm almost done weaning off of it. He is actually giving me a drug vacation! He didn't give me a new prescription this visit, and I'm not going back until March 8th. My Botox request is being processed now, and they're writing the letter to my insurance. I didn't realize how bad Botox is. I' [...]

Once again, I find I've been ignoring my NDPH followers...

lilhannon872005

Hi everyone. Sorry it has yet again taken me so long to post. I'm actually posting from a plane right now, I've been so busy that this is the first chance I've had to take asecond and update this.

I had finals a few weeks ago, which didn't go as well as I would have liked, but it didn't really help that I had poor midterm grades (thanks to the sleepy drugs I was on at the time, studying was really hard). Anyways, I finished my first semester s [...]

Holy crap its been a month

lilhannon872005

Hi everyone,

So its been a whole freaking month since the last time I wrote. I guess I've just been crazy crazy busy. So I saw my doctor over a month ago, he took me offthe Diamox (thank goodness) and put me on methergine. Methergine isn't bad, once my stomach adjusted to the drugs and my legs stopped cramping I got used to it and it honestly doesn't bother me at all anymore. I'm up to 10 pills a day (.4 mg 5x/day) and its not making any dif [...]

Feeling rather exhausted these days.

lilhannon872005

I had a pretty rough two weeks at work. Averaging 60 hours a week, and in those 60 hours I get A LOT of work done. I'm really over scheduled, to the point that I had to have a conversationwith my team leader about how I was no longer feeling like my work was valued, and more like my efficiency was being taken advantage of... not fair.

After two very rough weeks at work, midterms last week, I also still have two midterms this week. I have been EXHAUSTED. [...]

An update of sorts

lilhannon872005

Well, I officially stopped taking the cymbalta. I was scared about what the withdrawal was going to do to me but I was more scared of how addicted my body had become to it. I literally couldn't function normally without it. How scary is that? I've been off it for about two weeks now, and I'm still feeling its effects. I'm really tired, weak, have a hard time exerting myself, get tingly extremities rather often, and still am lashing out. But, I' [...]

Feeling like a broken record

lilhannon872005

Okay guys, here I am again.... I came off the cymbalta again as of Thursday. My last dose was last Wednesday. This time I was on about 7.5 mg (really hard to measure when you're pouringit out of capsules) every other day. Friday night I was supposed to take it, and I had even had a very very very emotional day, due in part (I'm sure) to coming off an antidepressant. Saturday I felt more like myself and Sunday emotionally I was all the way back to being my usual [...]

Major drug issues

lilhannon872005

Hey everybody. So once again (I feel like I'm beating a dead horse here) I'm still having cymbalta withdrawal symptoms that are really kicking my ass. I even tapered off really slowly (30 mg/day for one week, 15 mg/day for one week, 15 mg every other day) and I've been off of it for 4 days now and I'm back to having really terrible withdrawal. I'm tingly, exhausted and can barely make it up to the top floor of our apartment building without needing to col [...]

Reflecting on three years of pain

lilhannon872005

Well its official, I've had my headache for almost exactly three years as of 5:04 PM this evening. Its so crazy that I can still to this day pinpoint the exact moment it started and the detailsof that day.

I think this year instead of talking about how much it sucks to have a headache (like you all don't already know that), I'm gonna try to reflect on the awesome things that have happened since the last anniversary.

Since September 9th of 2009... I've g [...]