No news is not good news

Ok, I actually got a call back from the neurologist's office. Unfortunately, it was only to tell me they still did not have the results. His usual nurse was not in and the person covering for her did not seem to know what to do. She said that the nurse would have to look into it on Monday!! So, once again, I'm just hanging around with no information.

Headache pain is staying fairly steady now. Too bad it's at a level that's just this side of intolerable. It also hurts over a larger area more frequently, rather than being kind of a localized pain.

That's all that's happening. Nothing.

Still waiting

I guess the neurologist didn't get test results back yet...I'm still waiting to hear from him. If I don't hear by noon, I'll be calling back. After all, the lab tech said the results would probably be to the doctor by Wednesday!

Headache was bad all day yesterday and it seems to have picked up right where it left off. I have the tv on so I can watch news, but it'll probably be turned back off soon. I didn't turn it on at all yesterday and even used earplugs to try and reduce the noise. Hopefully I can leave the earplugs out today, but something tells me that isn't going to happen.

More later, if I hear anything.

Wow!

I actually got a call back from the neurologist! However, it was just to tell me the lab results have not been received yet. Once they're in, the nurse promised to call me.

Today's Thursday, right?

Ok. I didn't hear from the neurologist yesterday about blood test results. Therefore, I've already called and left a message for them to call me. (They have a totally automated phone system...only get a live person if it's an emergency). Here's hoping they call me back SOON.

The headache was really intense and more widespread yesterday afternoon and evening. I ended up using earplugs to block noise, which seemed to help keep the headache from worsening. Of course, it made conversation difficult! The pain's not as bad right now, but I've noticed the pain seems to increase steadily throughout the day now. 30mg of that med doesn't seem to make any difference whatsoever.

I'll let y'all know when I hear about the results.

Yes, I'm still here

I mean, where else would I be? It's hard to go anywhere when Diablo's on my lap holding me down! Headache's the same old thing. Nothing exciting going on. Hopefully, I'll hear from the neurologist today or tomorrow with the blood test results. No word yet.

Last night I had the jitters and my heart was racing like I had drank one of those energy drinks. I have no idea why and it's not going on right now. Maybe that one (1!) Mountain Dew I drank over the course of 12 hours set me off??? I drank nothing but water otherwise.

MLS preseason training started yesterday. Yay! That means the season is just around the corner. Of course, if this headache thing isn't resolved, I don't know how many games I'll go to since the noise level is quite high. Here's hoping that we figure something out. Soon.

Nothing else going on here.

Inauguration Day!

Sorry I didn't post anything earlier, but I was watching the inauguration. It's one of those days that makes me even prouder to be an American...being reminded of the peaceful transfer of power. All I can say is, "God be with you, President Obama!"

I went to the lab yesterday and had the blood drawn per the neurologist's orders. The lab claims the doctor will have the result sometime on Wednesday. Meanwhile, I've upped the Nortryptiline to 30mg/day as of last night. We'll see if THAT makes any difference. I'm not holding my breath, though. Not since I woke up with a strong, localized headache pain today, even after plenty of sleep.

I am just so tired of this headache and the inability to concentrate as I did before. I'm getting completely frustrated and irritated/irritable!

Ok, President Obama has signed his Cabinet nominations, so I'm going to go find some food now.

It's so nice to be home!

No matter where you go or what you do, it's always so good to get back home. I've discovered that the more or less "controlled" environment at home is what's keeping me sane. After being out amongst people in public and then at someone else's home, I discovered that the headache hurt much more all the time. I'm assuming it's mainly due to elevated noise levels, but I also think just more physical activity made the headache worse. Walking around the exhibits at the NSCAA convention caused my headache to steadily get worse. It wasn't exceptionally loud in there, so I think some of the pain increase was simply due to not being still.

Ok, doctor update....in the mail when we got home, there was an envelope from the neurologist's office. Inside was a prescription form indicating some blood tests to be done. No letter, note or anything else. I guess I just need to go get the blood drawn at one of the labs around here. For those who are interested, the tests ordered are: Anticardiolipin antibody ANCA, RPR and ESR. I think they're the same tests I had done last month. They're all tests to either rule out specific autoimmune diseases or to confirm them. I'll get that taken care of later today. Meanwhile, the 20mg dose of the new med had no effect this past week. Tonight the dosage goes up to 30mg. Yay.

I have another story to tell about this past weekend, but it's going to have to wait. Headache is getting worse already.

Home!

Just a quick note to let everyone know we made it home safely. I'll write an update later today or tomorrow with more info.

Hello from Wood River

Well, I didn't feel well enough to go out to breakfast this morning. I didn't get much sleep (headache/different bed combo) so I couldn't get up early enough this morning. I'll have some toast in a few minutes.

The headache didn't lessen overnight like it often does, so I'm starting the day with the headache firmly in place. No real plans for anything except going out for dinner tonight (I think). Just hanging out with family.

If anything exciting happens, I'll be sure to let you know.

Friday?? Right??

I just have a hard time keeping track of which day it is...a bad side effect of not working.

Anyway, I've survived the MLS Superdraft. Barely. We got to St. Louis yesterday and went to the convention center shortly before the doors opened for the draft. Our team owners had insured that the KC Wizards fans would have seats in the first few rows, so that was great! Several other small groups of KCW fans had also shown up, so we had people to talk with. I was doing fine noise-wise until the draft got under way. Then, in addition to video segments which would come on at high volume, the supporters group from St. Louis (they don't have a team, but they're trying to get one in MLS) would begin their chanting/singing. Loudly, as any decent supporters' group should! Then, they had a drum. Normally, I love the fact that supporters' clubs use drums and anything else to make noise. This time, not such a good thing for me. I managed to stay in the room for the duration of the first round, but my head felt like it was going to explode by then. I spent the 2nd, 3rd and 4th rounds of the draft in a chair in the space outside the ballroom. A bit noisy, but definitely much more bearable for me.

We went to the hotel and then out to eat (it was REALLY cold walking around downtown St. Louis!). My head still hurt, but it was down to a level where I could function reasonably well.

After we got up this morning, we went back to the convention center to tour all the cool soccer-related stuff in the exhibition hall. There are a lot of really intriguing soccer things out there! We learned some things, saw some old friends and got some trinkets. For an exhibition hall, it wasn't terribly noisy, but after about an hour or so, I had to sit down. My head was beginning to hurt worse gradually and I was feeling a bit weak and woozy. So, I spent most of the rest of the time in the nice comfy chair I located while Bobby looked through the rest of the exhibits. He bought some soccer scarves and we were on our way out.

So, we're now at Bobby's parents' house. I have some pain, but it's lessened considerable since we arrived here. I was able to lay down and nap for about an hour, which helped. We then had a great fried chicken dinner (thanks, Jean!) and then I decided to log on and update this (Jean told me to, too).

I had about as much fun as I could the last couple of days, but the severity of the pain when I was around noise and activity just really brought home how bad the headache is. At home in a more or less controlled environment, there isn't often a big swing in the level of pain. Boy, there sure is a big swing when I'm out in the real world!

Ok. Gotta go now. Dishwasher's going and I'm too close to it here. I'll probably write more tomorrow.

Love to everyone!

St. Louis

Bobby & I are leaving Thursday morning to head to St. Louis. We'll be going to the NSCAA Convention, mainly to attend the MLS draft and, perhaps, the Women's League draft. We also plan on going through the exhibition area just to check out new soccer stuff. So, I may not be updating this blog regularly this weekend. We're doing soccer stuff Thursday & Friday (staying in a downtown hotel), then going over to Bobby's mom's house for the rest of the weekend.

I heard nothing from doctors' offices on Wednesday. At least my cell phone works in STL!

Later. Some time.

Wondering Wednesday

I'm wondering if this headache is ever going away.

I'm wondering if we'll find out what's causing the headache.

I'm wondering if my doctor's battle with the insurance company will result in my getting a CTA test.

I'm wondering if his battle will also result in the head MRI payment being approved (the bill is over $5000).

I'm wondering what it's like to be able to concentrate for more than a few minutes at a time.

I'm wondering if I'll be able to "hang" at the MLS draft in St. Louis, or if I'll end up having to go to the hotel for some quiet time.

Just one of those days, ya know?

Gotta love insurance companies, right?

Well, the neurologist's nurse called me this morning and said that my insurance company had denied the request for the CTA! She said the doctor would review my chart/blood tests and see what the next step should be. They'll get back to me.

So, Bobby had taken a 1/2 day off work today (it's slow at work), and we were headed to Target, which is across from my primary care doctor's office. I had Bobby go there and we went inside where I just asked if I could talk to the nurse for a minute. The nurse came out shortly and I informed her of what the neurologist had said (worried about diabetes later in my life) and that the insurance company had denied the authorization for the CTA test. She looked shocked. At that point, I asked if I could go back and use their scale (to find out about that possible mysterious 20 pound loss). She took me on back and while I used the scale (without the 20 pound loss, mind you!) the doctor saw me and came over to ask what was going on with me as he had not yet received a report from the neurologist. I explained what was going on and about the denied CTA test, as well as the fact that the insurance company had denied payment for the head MRI I had done last month. Both he and the nurse looked a bit angry and the doctor told me to get the insurance information to him and he'll call and find out what's going on.

After our outing to Target and a late lunch at Long John Silver's, we came home and I looked up the claim/authorization request numbers and other information and left a message for my primary doctor's nurse.

I still have not heard back from the neurologist about our plan going forward.

Meanwhile, my head still hurts. Fortunately, it hasn't been terrible today.

Terrific Tuesday

Well, at least that sounds good! Actually, though, it's just another day in paradise. I upped the medication level last night, but there hasn't been any type of change yet. Headache's still there, though it got slightly less severe yesterday. Here's hoping that the larger dose starts to have some kind of affect. Soon.

My sleep appears to be back to normal...Or at least what passes as normal for me. No more trying to change my bedtime habits for a while. I think I'll get used to the food/drink changes a little bit more before I try that again.

Nothing else really going on. I'll check back later if there's any news.

Insurance

Well, I found out that the delay in getting the CTA scan scheduled is due to the insurance company having to "review" the referral request. The neurologist's nurse will call me as soon as they get notice of approval from the insurance company. I've never had problems with this insurance before, so here's hoping they approve it soon.

I also now have a scheduled neurologist appointment on April 6. As I mentioned, if the meds don't start working, I'll be calling him sooner.

Later!

Sleeping In

I actually got some really sound sleep last night! I went to bed about 12:30 and was awake when Bobby went to work at 6:00 a.m., but was able to go back to a sound sleep shortly thereafter. So sound, that the next thing I knew, it was 10:00 a.m. and my phone was ringing. It was the neurologist's scheduler. I was hoping she was calling to tell me about my CTA scan, but no, she was just letting me know that the doctor wants to see me again in early to mid-April! She didn't have appointments open during that timeframe, so she was putting me on the cancellation list, again. [If I have any problems with the new medicine, I'm to call him right away. If I reach the max with no resolution, I'm also supposed to call him.]

So, I got up, took a shower, and called the neurologist's nurse, who is scheduling the CTA scan. I left another message, indicating I'll be out of town Thursday & Friday. With any luck, someone will actually call me back and tell me what's going on.

The headache wasn't terrible when I first got up, but it's getting a little worse every minute. All this thought (!) I put into this blog must be tough on my brain. I'm going to go get some food now, along with my water.

Pain is bad

Well, after lots of fitful sleep Friday night, I got just a couple hours of reasonably sound sleep Saturday night. Unfortunately, it really was just a couple of hours. Headache woke me up and I have not been able to get back to sleep. Here's hoping I fall asleep sitting in the chair today. I'm so tired but the pain in my head is so localized and intense that I can't sleep.

I try to be as quiet as possible when I get up this early so Bobby can get some more sleep. Here's hoping it works and he isn't up any time soon. Of course, that's only if the cats cooperate and don't go walking over him! Pande's not so bad, but Diablo is heavy enough that you definitely wake up when he walks on you.

Nothing else going on. Just trying to grin and bear it.

Got some sleep!

Well, after only getting a couple hours sleep yesterday (including a 1 hour nap in the morning), I decided not to try to force specific hours on my sleep at this point. So, I stayed up until I was really tired (12:30 a.m.) and went to bed after taking my meds. I was awake again at 3:00 a.m. but fell back asleep in an hour or so. I then woke up every hour or so, but was able to go back to sleep pretty quickly each time. However, I kept this up until 1:00 p.m.! I finally woke up for good then, but stayed in bed another hour petting PandeMonium and Diablo.

So, I really just got up and took a shower a short time ago. The headache today is pretty intense and localized (probably why I kept waking up), and I just feel kind of washed out today. At least I don't feel punch-drunk from lack of sleep!

I never did hear back from any of the doctors. I'm back in the waiting mode. Bobby and I are planning on going to St. Louis next weekend (Thursday - Sunday), so I'll be calling the neurologist office on Monday to tell them to schedule the CTA scan early in the week or I'll have to wait until the following week.

Meanwhile, I'm still drinking water rather than soda 99% of the time. I do still have one occasionally, mainly because I'm just tired of no flavor. (All of those flavored waters and diet sodas??....almost all have aspartame, which gives me hives if I have very much). So, since I don't drink tea or coffee, I'm pretty much stuck with water.

We don't have specific plans this weekend as it's difficult to plan since we don't know how bad my head will hurt from day to day. I'd love to go to a movie, but I know the noise level would be well above my tolerance level. I got some new books (thanks, Jean!), but can't read them right now as concentrating for long enough to read more than a page or two is almost impossible. Even writing this is pushing it; I've had to stop a couple times just to let my mind rest. I start having lots of typos if I try this for too long. Therefore, I'm stopping now. Time for another mind break.

Can't Sleep

As you can tell from the time of this posting, I'm awake before 2:00 a.m. I've gone to bed at 10:00 p.m. for each of the last 3 nights (trying to set a regular sleep schedule) and I've awakened frequently throughout the night. However, Thursday it was almost 11:00 before I fell into a sound sleep, and I was awake shortly after midnight. I tried to fall back asleep, but after 1 1/2 hours of tossing and turning, I gave up. I got up, put on my fuzzy robe (thanks, Mom!) and came out to the living room. The headache's worse now than it was when I went to bed, so maybe that's why I couldn't sleep. I think that tonight I'll take my medicine at the same time, but just wait and go to bed when I feel tired. I figure that pushing for a regular sleep schedule is less important than just getting sound sleep.

No, I never heard anything from the doctors, except for the nurse calling to find out if I had a day/time preference for the CTA. I guess they're at least working on that!

Still Waiting

Nothing has changed since yesterday. I'll be calling doctors' offices again today and waiting for answers. So far, the Nortriptyline does not seem to be making a difference against the headache. I'm also not sleeping well (though it supposedly has some type of sedative affect). Since I'll be adjusting the dose after a week, I'll wait and see if I just need a different dose. Of course, it could take 4 - 5 weeks to find the dose.

It's amazing I can feel the least bit depressed with both the Sertraline and Nortriptyline in my system, but I think I've pretty much reached the end of my patience. If I could just start getting some answers about anything, it'd help a lot.

I'll update if/when there's a change.