Back To Philly

Sorry for the lack of posting lately.... we moved back to Radford and so I haven't had my computer up and running or an internet connection for a while. Tomorrow I head back to PA to spend the night at my in-laws, and then off to catch the train to Philly for another admission to the hospital on Wednesday. This time they're keeping me in the main hospital and doing a ketamine infusion instead of the lidocaine infusion that they've done on the last two admissions. This will be a totally different experience, and hopefully the outcome will be better than the last two where I only had 2 days of relief from my headaches. Ketamine is a pretty serious, scary drug.... I won't get into what all it is, you can look that up online if you wish, but it's an anesthethic that's used for humans and animals.... so yeah, I'm gonna be out of it I'd say... no posts from the hospital bed.... talk to y'all when I get back.

I'm Back

I've decided to start back blogging again.... most of the posts will be photos that I've taken lately, with a headache update thrown in from time to time when/if something changes. As far as how things are now that I'm back from Philly, things have kinda gone back to normal. My headaches are back and pretty much as bad as before. I'm supposed to go back to Philly in a couple weeks for a follow up appt, so we'll see how things go.

What's Going on These Days...

Sorry my updates have been few and far between. There's not a lot of news headache wise.... I was scheduled to go back to Philly tomorrow, but after a last minute trip to PA last week because Stephanie's sister had to be hospitalized, I decided not to go back.... well I've actually decided not to go back to the headache clinic at all. They were running out of different medicines to try, and so the next step was to go to a pain management center.... well I don't need to drive 7 hours for them to tell me that, so I went ahead and made an appointment for the pain management center, it's on July 22nd and will be in Roanoke. I've also started tapering myself off of the headache preventatives, as they haven't been helping, so I don't see a reason to stay on them. I also don't have the money to spend on drugs that aren't doing me any good. So we'll see how the pain management center visit goes....

As far as what's going on with us as a family.... we've been living at my parents' house for the past several months, waiting to buy a house. Well we had an offer on a house a mile up the road, but the deal fell thru when railroad said they needed more paperwork and another physical exam before they could decide on my disability. We were depending on that money with Stephanie's pay to get the loan, but since we didn't have proof of my income, we couldn't get approved. So I'm still waiting to hear on my disability claim, but they said it would probably be denied because evidently migraines aren't on their list of things that they see as a disability... even though I have letters from 3 doctors saying I'm unable to work. We did however find a nice house in Rocky Mount that we are going to rent, with the option to buy it if we decide that it will work for us. It's in a nice neighborhood, and I think will be a great house for us. The people we are renting from are so nice, and are doing so much to help us out. We're still in the process of getting all of our stuff moved, but should be in for good by the end of the week or so.

So I guess that's about it for right now... please keep us in your prayers with all that is going on in our lives. I will update again after my pain management appointment and let you all know how that goes.

Macro

Back from PA, Again

I had my latest doctor's appointment today at the Jefferson Headache Clinic in Philadelphia. Not much has changed since the last visit, still having the headaches daily, they get to about a 7 or 8 out of 10 on a pain scale every day. My doctor told me that we're pretty much getting to the end of the road as far as stuff to try to treat my headaches. There are a few more medicine changes that she can make, a couple of which she did today. She doubled my dose on one medicine, and then started me on a new drug that she's going to try for 2 weeks to see if it helps.

The next step, as I've mentioned before is the Occipital Nerve Stimulator or Botox injections. She told me to call my insurance company on Monday, just to see if by chance they would cover the stimulator, and if they won't, then she wants to know what paperwork/information they would need from her to make an argument for the procedure to be covered for me.

Another and one of the last options, provided I'm unable to get the ONS, or it doesn't work, is to be started on an opiod treatment.... which would be being on pain pills every day. So who knows, that may be the only way to alleviate my pain....

I have to go back again on July 13th, so I guess I'll have more for you then if not before.

Some Not So Good News

As many of you know, I had applied for disability with the railroad. I had to submit tons of paperwork, and all of my medical records, as well as have a physical at the beginning of this month, which I thought was the last part of the process. I figured that I should be able to get disability, as I had notes from 3 different doctors stating that I was permanently disabled and unable to perform my railroad duties. Well I got a call earlier this week from the retirement board stating that headquarters in Chicago was requesting more paperwork and also another exam because of one of my meds.... they also stated that my claim was probably going to be denied. When asked why, they said that it was because they go by social security standards for disability, and if it's not on their list, or if they don't consider my condition to be serious, or if they think I can do some other kind of restricted work (which I can't in my current railroad position) then they deny it.

This news affects a bit more than me not getting paid. Most of you know that we were in the process of buying a house, and were figuring my projected income into the loan process. Well with the news of me probably getting denied, we have to try to get a loan based on only Stephanie's income that she'd be making. Well for the house we were buying, this is a no go. So we're not going to be able to get the house that we thought we were going to be living in.... we'll be living in my parents basement a little bit longer. *sigh*

A New Adventure

I don't know if anyone even follows this thing of mine anymore.... I know some people check out my updates when I send out an e-mail, but other than that, I don't know. I've decided to start another blog, along with this one. This blog will still be used to post headache updates as they come along, as well as various photos now and then. The new blog will be a project of sorts..... I've decided to post a photo a day, for a year, of my Mia. I'm doing this for 2 reasons, first is to keep track of how much my little girl changes over 365 days, and document it with pictures..... the other is is motivate myself to pick my camera up and put it to use every day. So starting today, you can keep track of Mia along with me at www.miaraene365.blogspot.com

These are our catfish going crazy over their food at our family pond.

WHEEEEEE!

Where's the Polar Bear?

Happenings

Well, since my spinal tap on Monday, a lot has happened..... ok, maybe not a lot, but I thought I'd update you anyways.

On Tuesday, I came down with a spinal headache. This is caused by the spinal tap procedure, and is probably because of a little bit of fluid leaking out. After a couple calls to the hospital, they told me to wait a week, and then if it's still hurting they would do what they call a blood patch to fix it. They told me to call my doctor in Philly and see if she would give me something to get through the weekend. Her advice was to drink LOTS of Gatorade and at least 2 cups of coffee a day, and to stay on my back as much as I could. Well, having a 2 year old.... you know how that last part held up. To help you imagine what a spinal headache feels like, take the worst headache you've ever had and that's what you feel everytime you're sitting or standing..... and it lasts for a week before they try to fix it. Laying down helps a little, but it still is pretty bad. So I may be going into the hospital again tomorrow to have the blood patch procedure done, but I guess we'll wait and see how the spinal HA is going.

Anyways, enough of the dreary news.... a little bit of good news. We went and looked at a house on Friday, thinking that we were going to put an offer on it.... but because of various reasons, we didn't. We did however go back to a house we had seen and put an offer on before, and decided to put another offer on it. This time it got ACCEPTED! WOOHOO! So provided all goes well with the loans, etc.... in about 45-60 days or so, we'll be home owners in the Callaway, VA area. And, bonus, the house is only a mile from my parents. So now when I need help with Mia, noone has to drive an hour to Radford and back to get her. This is exactly what I prayed for, and God is opening the doors for us. He's SO GOOD!

Free Fallin'

Spinal Tap

Today I had my lumbar puncture procedure. It was definitely not as painful as I thought it would be. I felt a little pinch when they injected me with the numbing stuff, but after that I didn't really feel anything. They checked the opening pressure of my spinal fluid, which read as 20.... not sure what the normal is exactly, but the doc said I didn't have too much pressure, so that's good news, but also discouraging because it's another dead end as far as figuring out what's causing my headaches.

They told me to lay around for the next couple days and keep my head up.... literally, not emotionally... although I'll have to do both. I feel OK now unless I sit up for a few minutes, then my back starts aching and I have to lay back down.

Anyways, I guess it's back to Philly on May 29th, and see where we go from here. The next thoughts were the implant and botox injections, neither of which we can afford if insurance won't cover them, so I dunno what else the headache center can have up their sleeve.

Back Again

We just got back from Pennsylvania again. We went up on Easter, spent that day and Monday with the family, and then yesterday, Stephanie and I headed off to Philadelphia for my doctor's appointment. The reason for the appointment as you probably know was because things haven't been getting better, they started me back on one of my old meds, and they wanted to see how things were going.... also it was a follow up appointment after having the facet block shots in my neck.... which by the way, didn't help any.

The short version on this recent visit is that they took me off of 3 of my medications, started me on one new one, gave me 2 new meds to try when I get the severe headaches (which is becoming more and more frequent) and also they want me to have a lumbar puncture (spinal tap) done. They want to see if I have too much pressure around my spinal column, which if that's the case, that's a whole other kind of medicine that I need to be on instead of the migraine drugs that I'm on now. So I'm gonna call and try to set up that procedure tomorrow, and hopefully we can figure out the answer on that.

The next steps if the spinal tap is normal, is perhaps the Occipital Nerve Stimulator which I wrote about before, or maybe Botox injections. Both of these are very expensive, and may or may not be covered by insurance. Hopefully it will be, as I have pretty good insurance despite having to fight with them a couple weeks ago after they cancelled my coverage and didn't bother to tell me.... but that's a story for another day.

Thanks for all the continued prayers.... I know there's an answer out there somewhere!

Maybe All I Need Is A Shot In The..... Neck?

Yesterday I went to the pain management clinic to get my facet block injections. Basically they numbed me in a couple spots on my neck, then gave me the nerve block shots which went in deep to some nerves that come off of my spine.... right around my C2 and C3 vertebrae. I'm not gonna lie... it wasn't the most pleasant experience. It didn't hurt really, but just tremendous amounts of pressure. Anyways, they said that it may take a couple days to notice anything, and that I'd have a really sore neck for a few days.... they weren't kidding. No help so far today, as I've also got a rather bad headache. If however it ends up working, which they told me would be a 50% reduction in my headaches, then they would do another one in about a month to make sure this one wasn't a fluke. If that one worked also, then that opened up all kinds of new roads, such as freezing the nerve, burning it, etc.... permanantly blocking it. So I'll keep you updated as to whether they work or not.

Also today, we finally closed on our house that we sold in Radford. About a week or so late, but at least that burden is off our shoulders..... now if things will just work out for the one we wanna buy down here.....

DIY Ringflash/light

I've been a little bored lately, so I decided to make a ringlight/flash for my camera. When you use the flash on your camera, it sometimes (most of the time) gives you that harsh flash look to your pictures with a pretty bad shadow. Well a ringflash softens the light a bit and gets rid of the shadow for the most part. You can buy a ringflash that fits over your speedlight for a couple hundred bucks or so, but my version cost less than a couple bucks. I used some cardboard, aluminum foil on the inside to reflect the light around, a piece of white garbage bag to diffuse the light when it comes out, and lots.... LOTS of tape.

Here's a shot with just the flash....

...and here's one with my contraption attached.... gives a little better light on her I think (even though the photo itself is a little blurry, chalk to that up to operator error)

Anyways, nothing really spectacular, just thought it was cool and something to share.

Splash

Headache Update

This is how I feel right now.... a little grumpy.

I have a little update on my headaches.... Things haven't been getting any better lately, so I called my doctor a couple weeks ago to see if there was anything else we could do. She prescribed me a medication called Thorazine, to take when I have a severe headache, which has been occuring more and more frequently lately. The Thorazine pretty much just knocks me out for 12+ hours.... no joke, I mean knocked out. It also makes me a little woozy when I stand up and move around. It's actually the drug I was on in the hospital(well one of them) that I passed out while I was taking it.

Anyways, fast forward to this week I talked to my doctor again in Philly and she said that things seem to have gone downhill since I was in the hospital, and the only thing she can think of is that they took me off one of my medicines while in there, so she wants to start me back on the Lyrica and see if that helps any. She also wants to see me before my scheduled appt that wasn't until May. So I have to go back to Philly on April 14th.

Also, today I was able to see the pain management doctor in Roanoke. I wasn't supposed to go in till the end of April, but they had a cancellation and so I got in early. He felt around on my neck and head, and said that I didn't have any of the signs that are usually associated with having problems with facetal nerves. He said he would do the facet nerve block injections that the doctors in Philly wanted, but he wasn't sure it'd be any help.

So that's why I'm kinda grumpy feeling today... and thats the update.

Because I don't really have any recent photos that I wanna post.... I reach into the film archive....

My Girls

Holga Mia

yeah so the reflection covers part of her face.... I still like the way it looks for some reason.

Leaning Tower