Living with "The Guilt"

So, I always get this deep guilt whenever my husband pulls out the bills every month and more and more medical bills are in his pile. He tells me not to stress about it and to not feel guilty. But I can't help it! I feel like we never get a break from it!! It is so frustrating- we can never seem to get on top. I just hate all this guilt. Ughhhhhh.

I am a stay at home mom, so I can't even contribute financially to help pay the bills. Then I start thinking that I feel bad Scott even has to deal with this all together. He didn't sign up for a wife that was going to the doctor every 4 weeks like clockwork. I said that to him tonight and he said that if i had to go every day he would be there. I know he loves me and understands. But I still hate how much this is strapping us. If we could direct all of that money that goes to those medical bills to other things....

"You have a headache again?"

I can't tell you how often I hear that comment. Ummm, yeah. People just can't get their mind around the fact that I live with head pain 24/7. I think most people think I am exaggerating. It is so frustrating.

Occipital Neuralgia is NOT JUST A HEADACHE! It is a neurological condition that resides in the head. So often I am just so tired of trying to explain my condition due to the blank stares and sad faces people give me when I tell them about my head stuff. So I try to avoid it as much as possible. Put on my happy face and push through it. The only problem is I know my face is a tell-tale book. almost 100% of my pain is behind my eye. When I get the lightening flashes instantly my hand goes up to my eye to press and give some relief. People see my hand pressing into my eye and ask if I am ok. It is a reflex and I would stop it if I could. But instead I have to try and explain. I am so tired of it. I wish I had a better quick answer for them. blah.

The thing is is that I AM a happy person. I love life and love all that God has given me. I feel so very blessed. I am just a happy person living with chronic pain. Often times I feel as though I am living a double life. One side is the Shiny Happy People Holding Hands life. And the other is the pill popping, eye gouging, head grabbing life. Still trying to figure out how to make the two work in harmony together....

Still Happy After all These Years

I had been avoiding making a blog like this for some time.  Not because I didn't need a place to vent, share and record my pain/treatment- I did! But I didn't want to come across as a Wendy Winer, a woe-is-me, lets throw a pity party kinda girl.  I am happy!  I really am a positive person.  Anyone living with chronic pain will tell you that they keep most of their daily pain levels inside and try to push through the pain.  No one wants to live bedridden, missing out on all the fun, or to be known as The Girl With The Headache (or fibro, RA, etc.  fill in the blank with your own chronic illness).

I have two amazing children and the most loving and understanding husband.  I would give anything for them!  And so I do just that.  I push, and push, and push my way through the day.  I don't want to miss out on a single thing that my family has to offer.  I love my life- all except the head pain and neurological disorder of course.  But it is a part of me now.  Like I said in my first post- it is my new normal.  These illnesses have no "cure".  Yet.  I am still remaining hopeful.  So now I just need to find the best way to deal with it.  Just ignoring it and shoving inside my own head isn't going to work anymore.  I think my head has enough to deal with now!  So I need to come to full terms with my chronic illness, not be ashamed of it; embarrassed to share that side of me anymore.

So on one hand I wish my family and friends could really and fully understand what it is like in my shoes. What my pain is like, what I deal with on a daily basis. How this isn't "just a headache". But on the other hand I find I have a hard time talking to them about it.  I try so hard to have a "normal life" and not let my pain rule my life that so many just have no idea.  But I need to Woman-Up!  This blog is my first step.

Baby steps, right?

Follow up with Dr. D and an Official Diagnosis

December 28- I had one of the best visits with my doctor today. Lots of talking and testing. She is amazing! After not being taken seriously for so long, I can't stress how much I appreciate her! Looks like I do indeed have a form of Occipital or Trigeminal Neuralgia or both!). I asked her about what the Optical Neurologist said, about the nerve block not working if I didn't have Occipital Neuralgia. My pain has been increasingly worse since the injection, not better. So what does this mean?! She that that basically I have an angry nerve (Grrrrrrr!).  It didn't "agree" with the type of injection and is now mad and lashing out at me, causing more increased pain. This is I guess another way of knowing that the shot did something proving I do have the disorder. If I didn't have it then the shot would have done absolutely nothing at all.

So I am trying out a new medication starting tomorrow to start relieving my nerve pain and will be slowly weening off my beta-blockers.  She wants to see if my migraines come back off of them or if my pain is primarily nerve related. Nervous but hopeful!  We have a plan of attack! (Hi-Ya!)

I think I am mostly nervous about going off the labetalol. I didn't need it while I was pregnant this last time; guess my hormones fixed my issues. But once I gave birth I had the most crushing migraines that I just couldn't shake. I can *almost say my migraine pain was worse then my c-section pain. The house doctor put me back on the labetalol, I had one more migraine and then I was back to my normal 2/3 daily pain level. Dr. D says that I will be seeing her regularly, so I won't be left in the cold in serious pain if i need it still, or something else better.

Anyone familiar with Carbamazepine? That is the new med she is putting me on. It's an anticonvulsant. Actually now that I think about it, I think it is the same stuff my crazy college roommate took for her epilepsy. FYI, It wasn't her epilepsy that made her crazy, I think she was just crazy naturally... accused me of stealing her stuff, would flip out on me for no reason, oh goodness a whole mess of stuff. But enough about her, yuck. So anyways...

Dr. D wouldn't prescribe me any pain pills right now. She said that if this is indeed all nerve related and that I did have this neurological disorder, then this medication would work as a pain pill, so to say, on the over-reacting nerves in my head. I hope she is right, because my pain level (even on my beta-blockers) has gotten up there again. My daily pain is now closer to a 5/10 and taking 4 Advil many times doesn't even cut it.

Along with my 300 mg of Labetalol, I will start out on 100 mg of Carbamazepine once a day for one week and then jump up to 200 mg twice a day after that. I am then scheduled to see her again in two weeks to discuss my pain levels, how the new stuff is treating me and then to work out a schedule for going off the Labetalol. She says that the Carbamazepine is a low does, so not to be surprised if I need to increase the dosage until we get things just right. She really wants me to be a "one pill girl" and not need to take all sorts of things to feel "normal". Oh goodness I hope she can do it!  We shall see.

My new "Normal"

Chronic Pain. It is never something I thought I would have to deal with. But then again 5 years ago, I just kinda assumed that all people dealt with headaches on a regular basis. After my sister brought it to my attention saying to me, "You sure get headaches a lot." At first I blew it off, and then I really started thinking about it. And yeah, I guess I did. I would get one pretty much every day, sometimes for a few minutes, sometimes a few hours.... When I started asking around I found that no, most people don't live with regular headache pain. I was just a weirdo with issues. I guess deep down I knew that. But it just seemed strange to me. I knew I should probably see someone about them but I just hoped they would go away on their own. But they didn't.

We were sitting in church, and I remember leaning down to pick up a hymnal and I got this crushing feeling in my head that I had never felt before.  Every movement sent me reeling in pain.  The music became too loud, the lights too bright and all I wanted to do was to go bed.  Welcome to my very first migraine.  I went to bed and slept for over 4 hours.  I woke feeling groggy and disoriented.  The migraine itself had faded but my daily pain was there and stronger then ever.

Instead of those few minutes of headache pain it had slowly morphed into hours which turned into days and then just never ever went away. I was living with constant 24/7 headache pain and the intesity was increasing to where just a couple of advil no longer did the trick.

It was now time to see my doctor.  I went to my general practitioner because that was all I knew.  I went to him for everything else, so it just made sense for this too.  He had me keep a Headache Journal.  I was to write down everything; what I ate, what I did, anything at all that could pin point what on earth could be triggering these headaches.  I was to keep it for a full month and then come back in to see him and we would go from there.  He also sent me for a full CT of my head to check for tumors, aneurisms, and other major icky stuff.

UGH, one whole month without answers?  Crap.

It seems stupid now, but I really and truly thought he could tell me what was wrong and how I could fix it at this appointment. This is how it always worked in the past.  I would have something wrong.  I went to the doctor.  He would tell me what was wrong, prescribe me some medicine and two weeks later I was all better.  I never had a "condition" before.

So dutifully I wrote it all down.  And I noticed a trend: There was NO trend.  I would wake up and the headache would be there.  I would go to bed and the headache would still be there.  Unfortunately I couldn't find any food triggers.  I was really hoping that something I was eating was doing this to me.  I would much rather live without coffee then to have constant headaches.  But since I woke with it and went to bed with it we couldn't find anything I was doing that was giving me this pain in my head.  On a positive note, my brain scans can back normal, so that was GREAT news.  I had to admit I was a wee bit terrified he was going to call me and tell me I need to come in for emergency surgery to remove the giant tumor pressing on my brain. *phew*  But the downside is that I really had nothing to bring to the table: no triggers, no tumors, no aneurisms, no nothing.

He said I had a condition called Chronic Daily Headaches (CDH) which is also known as New Daily Persistent Headaches (NDPH).  He explained that just like some people had high blood pressure, I had Chronic Daily Headaches.  There was nothing I did to give it to myself, and unfortunately there was nothing I could do to get rid of it.  And it was likely I would have this condition for the rest of my life.  Now it was time to talk about a daily preventative medication and one to stop my migraines in their tracks (I had already had a few more before I actually got in to see him).  We had to get my pain level under control.

Um, wait.  You mean to tell me I was going to have this headache for the rest of my life?!!!!  What the hell?!  Not the news I wanted to hear.  I have to admit at this point the thought of a brain tumor actually sounded a little appealing.  At least then they could cut it out and I would be done with it.

Nope, no such luck.  This is my new normal.