Sunday, May 29, 2011

What a month it's been!

It's been a very busy end of the school year (just a reminder--I'm a school teacher). My symptoms had been getting very bad and I spent one entire week calling me doctor every day trying to get a hold of her. I knew it was time for a spinal tap and I was trying to get a script from her to go get one. When she finally called me back on Friday, she sent me to the ER to get one. I get very frustrated with her, because when I feel like my vision is getting worse and fast, then I call her right away, but the problem is.....I wouldn't have needed the additional ER bill if she had done her job and gotten back to me right away. The spinal tap was almost two and a half weeks ago. I had called her back the following week to try and get an appt to talk about going to a larger dose of diamox and jumping on topamax which she mentioned to me on the phone. Well, the office has not called me back and I'm frustrated. Yet another doctor who doesn't return calls! (That's two neuros just since being diagnosed in December of 2010.)

The Midwest has been a mess of storms and for the first time since being diagnosed my brain was a mess during the storms (and even when it wasn't). My pressure is so high again (less than two weeks after the tap) that I have been really having a difficult time. I went to the ER yesterday (Sat) and was given two rounds of dilaudid, but when I got home it had worn off and I was right back to where I was. The ER doc gave me another script for vicodin and doubled my dose of diamox since I was at a lower dose than what is considered "starting" dose. Only had the double dose last night (haven't taken my nighttime meds yet today) and of course haven't noticed a difference, but hope to soon. They offered another spinal tap at the ER and I declined. I had too much pain with my last one and unless they are going to use a general anesthesia, I can't keep doing this to myself. I'm going to call my PCP tomorrow (doubtful they are open, if not Tuesday) and ask them to call and get me an appt with a neurosurgeon immediately. I constantly have a pressure headache, but also have a spot on the top/right/frontal area of my head that feels as though there is a knife being stabbed into it. I am nauseous, constantly overheated, have the yellow spiderweb over both my eyes, have eye pain all the time, and have the whooshing/constant noise as well. To say the least I have been miserable. I've been pushing through work each day knowing I am getting down to the end, but it's been very hard to walk into work feeling like this.

Foot surgery in ten days, and summer comes in 9 days.
Signing off for now....

Sunday, May 1, 2011

What a hassle!

For the past month or so, for the most part I've been doing better. The headaches were not as often or severe and I could manage with them on my own. My PCP started me on Diamox to see if I was allergic to the sulfa or if my "rash" was from being in the sun on Diamox which I didn't realize I wasn't supposed to do and of course was on vacation in Mexico/California. I've been on the Diamox for over a month and have not noticed a single rash, I was on such a low dose just to be safe...and now we're going to up it. I'm on 250 mg a day right now. The past week (maybe week and a half) my headaches have been getting worse again. I feel like my pressure is up, but I'm almost afraid to tell my neuro because she will send me for another LP which means taking off of work (out of sick days=no pay) and going through the horrible pain. The last LP I had left me with a horrible taste in my mouth.....It was a two hour procedure and very very very painful.

I'm a member of an online support group for pseudotumor on dailystrength.org. If you are not a member, I highly recommend joining as I've found some wonderful friends, received some great support and advice, as well as being able to provide others with my own personal experiences. The past couple days, members have been posting regarding pseudotumor diet in order to reduce headaches and other symptoms. I'm still relatively new to this dx as I've only had it for about six months and on my good days I still pretend I don't have it (wishful thinking I suppose) which means I didn't really know from any of my doctors that we are/were supposed to reduce sodium intake. I know it's a given that we're supposed to eat healthy if nothing else to treat our bodies right, but geez. I took a look at a few websites and it's going to be really difficult to follow the diet. I know I need to lose weight and that will surely help, but geez, I have never had to watch what I ate before (ie glucose, sodium, etc.) and as it is I'm not one to suck it up and cook for myself. So, other than my goal of losing weight (which I've lots about 10lbs in three or four weeks), I really need to work on the foods that I'm putting in my mouth. So, I guess instead of focusing on losing weight, I will focus more on what I am actually eating as that will help the weight issue as well.

What a hassle it is going to be for me to try and take better care of myself. I've tried to do it before being dxd, and now of course I have a much larger reason for doing it. I know that I can do it if I put my mind to it, so I've got to focus on that.

We can do whatever we put our minds to, but yes, we really DO struggle with it. I am here for you, and I hope that all of you are here for me. Have a wonderful week to my family and friends (and whether I know you or not, you too)!

Together, we can do this!

PS. If you're interested in the info that I've been reading regarding pseudotumor and pseudotumor diet, feel free to visit the following links.
http://www.associatedcontent.com/article/1999756/managing_chronic_pseudotumor_cerebri.html?cat=5
http://www.headaches.org/pdf/Diet.pdf
http://webeye.ophth.uiowa.edu/dept/iih/pc_5.htm
http://www.trunity.net/NOVEL/articles/view/137051/?topic=18618

To give blood or not to give blood, that is the question

Back a thousand years ago before my head exploded, I gave blood fairly regularly.  I was a bit of a tough stick. Veins are deep and rolly. But a good stick-er could hit it first time, no problem. The blood flowed fast and I was out of there quick.

Then the head went all explody.  Lots of new meds. Feel like crap all the time. And I was wary of giving blood.  Lord have mercy I did not want to do ANYTHING that would make the head mad.

But the head has been mostly really stable for the last couple of years so I got brave and went to give blood on Valentine's Day for the big blood drive.  Mistake, because all the stick-ers are there and they don't have the luxury of calling in the best one for you.  Sweet girl just couldn't get it and after so many tries, had to let me go.  No blood given.

I was disappointed because I was willing to let her get someone else to try again, but she said they weren't allowed.

So yesterday, I tried again at the blood mobile at our freecycle event.  Even though I hadn't actually given blood last time, I was still in the system as a "donor" and had to wait the 6 weeks.

Well, it took three of them to hit the vein. Lord have mercy. It was deeper than they thought and it just took a while to hit. And it kept rolling on them. Of course. Hurt like all get out but I told them to keep going if they thought they could hit it.

Then finally, eureka!

Going great!

Then.....it slowed.  Then stopped. Ugh.  Not a full pint. My blood had clotted and stopped the flow. Blew out the vein.

All that and no usable pint.  Not their fault. They were sweet and nice and did a great job. It isn't like they can see that dumb vein in there after all.  A good dear doctor friend looked at my gigantic deep purple and red knotted bruise last night and said, "yeah, you probably shouldn't give blood."

So today, my head is having sharp pains. Pressure lightening strikes.  The head is a bit mad.  Could be, I'm dehydrated, which caused the premature clotting to being with.  And the reason for the head being mad.

And I'm wondering if I really should be giving blood? The tough stick issues aside.  That I can live with.  But I wonder if the stress of that plus the physiological stress of less blood is too hard on my already medically stressed body and systems? Or is this just dehydration I'm feeling? If I knew I could give blood, I would keep doing it.  As long as the stress to my system is something I can handle, the good it produces is worth it.

But I have two failed attempts. Granted, both under less than ideal situations. Possibly if I went in on a normal day and could get their best person, all would go well.  But maybe not. And it isn't a good idea to stress my system like this and not have the benefit for others at the end.

I don't know. Something to ponder..... Maybe my doctor friend is right.

Any of you give blood?  Do you feel any effects?