Tuesday, August 25, 2009

New Follower! Soon I will take over the World!

Yeowzah! Almost three years into the Bloggosphere and I now have three dedicated followers! Welcome!

(I'm aware I have more readers... but none will openly admit to it! lol)

Sunday, August 23, 2009

Big Plans

I've been moping a bit, and I can't stand that. The self-pity thing disgusts me, and I can't have it. I have to find a way to stay positive, and when you've hit the end of the medicine road with IIH and you've still got headaches, it gets tough. So what's a girl to do?

She looks to the Zen of the best Puppet Show on Earth: Avenue Q: The Money Song

The more you give. The more you get. That’s being alive!
All I’m asking you Is to do what Jesus Christ would do.
He’d give me a quarter,Why don’t you?

I feel generous! I feel compassionate!

You do?

Yeah! I feel like a new person - a good person!
Helping other people out makes you feel fantastic!

That’s what I’ve been trying to tell you-

All this time I’ve been running around thinking about me, me, me - and where has it gotten me! I’m gonna do something for someone else!

And so here I am, looking to puppets to help me find my philosophy yet again. But it's a good one. Betsy saw the IHRF video I posted on facebook and offered to help me organize a fundraiser. That struck a real chord. It was the right offer at the right time. Now I have a path... something to work for. Doc says he doesn't have a cure for me... okay, then I'll work to get everyone one. I'll get my friends and family involved, raise awareness, and do some good in the world. It will be good. I have some good ideas.

I've also got some ideas for the foundation in general. I learned this week that cystic fibrosis is also a rare disease (rare is defined by number of diagnosed patients). But, most Americans don't think of it as rare because most have heard of it before. That's because the cystic fibrosis people have been good at awareness and advocacy. Awareness = political clout = money = research. I also think the foundation needs ambassadors across the country. Help with answering questions, referring to neurologists, answering questions for family, making phone calls to hospital administrators and patient advocates. (Many IIH patients get called drug seekers in ERs because pain meds don't touch the pain... that label is hard to shake). Anyway... there's a lot to be done. Gotta start somewhere.

Monday, August 10, 2009

Year in Review

Sometimes I write things in other places and think to myself, "This needs to go in your blog." This happened to me today. A new member of my IIH group sent me an email asking some specific questions, and I sent a prettly lengthy response. Towards the end, I realized that I had pretty much summed up my existance for the last year (minus personals) and it might help others get it, the people who care about me.

So a little back knowledge. A lot of people who are newly diagnosed have a real hard time with "No cure" and "Don't know the cause." Understandable. "If you don't know what caused this, how do I know this is what I really have?" The woman I'm responding to just had her spinal tap and has had two weeks without a headache, which is pretty common. She's a quart low on CSF and her body is slow on replacing it. It only took me two days to get headaches again. Anyway, she hopes that she is now in remission because she once read that for some it is a one time deal. She is also wondering if headaches come and go. The people who post to the group are often a lot worse off than I am... going blind, can't work, spinal taps in the ER, no insurance, or don't really understand how to best utilize the medical field (will go to ER when pain is severe, not call doc).

So here it is... and it's long.

Hi! Glad to help! I think often that I'm not as bad as a lot of people here. I can keep a job and go to work every day. It's actually better for me to. I have more to do during the day when I work to keep me occupied... not paying attention to my symptoms. The past week I've felt cruddy and more sorry for myself. Bad place to be. Usually I'm better at staying positive. I'm kinda frustrated with my husband and house right now too. I took a mental health day today for stress. Hopefully I'll be my plucky self in no time.

It seems like you are into research... so this is about to be long. Have my story:

Okay. My first step was in October when i went in for a regular eye exam. I went to a new place that offered to dialate my eyes, and I hadn't in a while (Glaucoma and other eye diseases run in my family) so I did. That's where they found the papillaedima. Sent me to a retina specialist who sent me to an MRI and a neurologist. In December I had my LP, opening pressure was 30 and I got my official diagnosis.

My symptoms vary from day to day. I have a headache every day, but even it varies. Sometimes behind eyes, or ears, or pushing against jaw and I can feel it in my teeth almost, or top of head or all of head, or neck, or all of spine, or neck and radiating out across shoulders. Today I have vertigo pretty bad. Fatigue. Sensitivity to heat. Sensitivity to light and noise, but not like with migraines where it makes my head hurt... its more like an annoyance. So, irritability too? Aphasia (can't locate words I'm looking for), spatial awareness issues (I have bruises all over), confusion. I sleep a lot more when I hurt. Good news is I don't get all of this at once!

Let me take you back a little. I was promoted to supervisor in August and about the same time I noticed daily headaches. I thought it was related to stress or the lighting in my new office, but the headaches were different than I'd ever had. Not tension exactly. Not migraine. (CSF in skull). I've pretty much had a headache ever since. But, I've only had to call into work 4 days since my diagnosis... pretty good, I'd say.

Back a little more. For the previous year or so I thought I was developing arthritis in my neck. It would get stiff and sore and the joints would pop, especially before a rain. (This is CSF pressure in spine) The summer prior to this I had to stop taking the stairs at work (3rd floor of a warehouse-turned-office) because when i got to the top I had a blinding, pulsing pain like something is about to burst out of the top of my head. (This would be exercise intolerance and increased blood pressure increasing the amount of fluid and pressure in my head)

I really don't remember when the wooshing in my ears started, so it must have been after I began learning about PTC, or it would have freaked me out, so I'd guess November ish. If my BP goes up... anger or exercise, I get a little of it, but not like before.

Way back.... like 7 years ago. This may or may not be related to PTC, but some other members here have had similar experiences. I was 26. I gained 40 pounds for no reason. No change in diet or activity. I began having night sweats and fatigue. My period went all wonkey... 3 week cycle then 7 weeks. I had myself convinced that it was perimenapause, but my doc tested for it and thyroid, but both were fine and my symptoms were dismissed. I have the personal belief that this is where the disease started for me, but don't have any medical backing for it so I don't tell everyone I've had it for 7 years. (You can have PTC without headaches, which may be why I think I do better than others).

I don't mind talking about birth control. I actually got my IUD in August when my headaches started. The retina doc said I should think about removing it (retina doc is not a neuro-opthamologist) since they correlate. I mentioned my IUD (Mirena) to my neurologist, but he didn't have a problem with it. Secondary IH with the Norplant, or with Oral contraceptives have way more hormone than IUD and goes through your whole system. IUD is delivered directly to your uterus. I also talked with my GYN about it. I've known her since she was a resident and she had a PTC patient when she rotated in neurology and we talked about it for a while. She also didn't think I needed to remove it.

Weight is always a touchy subject, but as we are friends now :) I've never gained or lost weight as a result of my actions (hard to believe but true, that's why I need help). The 40 I just lost was not a conscious effort on my part either. Two of my meds list "anorexia" or "appetite suppressant" as side effects. Until the diamox was discontinued a few weeks ago, I barely moved, so I bet the 40 pounds have been muscle loss. Since I've stopped "losing weight", I have lost two more pant sizes, so I'm happy. It tells me I'm getting my muscle tone back and getting smaller. People around here get all worked up when you start talking about weight. There just isn't enough good research. Did PTC cause me to gain weight? Did my weight cause PTC? Who knows? Fact is, my BMI is still high. I can't say it's BS until I'm a size 6 and still having symptoms. Like I said, it's all I can do at this point. I used to want a shunt so bad, then a lot of people here got them and I got a reminder of what that road is like.

And so I finish the email with some other tips for newbies.

So some other Year in Review info.
There are no meds to help with the headaches, dispite that I've had a million med changes, so here goes. Since Mid-December:
1. Start Diamox, Topamax, Lasix
2. Stop everything, Start anti-allergy med.
3. Restart Lasix
4. Restart Diamox
5. Start Verapamil and Zonegran
6. Stops working, add another Zonegran
7. Stops working, add another Verapamil
8. Stops working, add another Zonegran
9. I want to exercise sometime, add Indomethicin PRN (doesn't work at all)
10. Stops working, add Effexor
11. Start passing out, stop Diamox
12. Increase Effexor
13. Increase Effexor
14. I'm dizzy, add Antivert PRN today
..... and I'm still miserable.

I feel stuck. The last post sounds suicidal, and I'm not. I don't need my friends to come at me with lethality assessments (and I have had someone do that once in the past). I feel a lack of choices and that's my problem.

Maybe a nap will help.

Sunday, August 9, 2009

Disappointment and a Prom Dress

Part of me wants to be done now. There's nothing more to say, I've reached the end of the medicinal intervention road, and it doesn't really matter anyway. There's nothing they can do. It doesn't help to talk about what's going on. I feel like I'm whining, and almost always someone attempts to negate my concerns. (I'm sure it's an attempt to make me feel better, but what it does is say, you have no reason to be worried so shut up). I don't expect someone to come up with something profound that makes me feel good about my situation. But if I can't process what's going on in my mind, I'll end up in a very dark place. It would be really great if I could get someone to truly understand, someone who isn't an on-line buddy thousands of miles away. I've just had a really wierd health day, but it doesn't matter because I just have to get used to it.

On a lighter note, I took Olivia shopping today for a few school things. We were at Value World and before we checked out, I took her over to the formal wear for a little fun where she fell in love with a cute prom dress. I had to buy it for her because she still likes to play dress up sometimes and it looked really cute on her. She was really patient with me today as I struggled with vertigo, and I'm very thankful for that.