Disney World

I will be leaving for Disney World this Saturday. It's a trip that my brother and I have been planning for years, but my headaches always got in the way. The fact that I am now able to go is all due to the stimulator (and a very generous sibling). I will write when I get back and share how I was able to control the headaches.

Falling and Fears That Follow

My mom came out to visit me this weekend because I have been feeling so much better and it's been years since she's seen that. We spent hours shopping and having a good time. Our last stop for the weekend was Costco to pick up odds and ends. Wouldn't you know it? I slipped on a liquid substance (maybe jam?) and fell. Hard. At first I didn't know what happened. Then I wanted to get up and leave quickly because I was so embarrassed but luckily my mom had me stay down until we could make sure everything was fine. I was sore but that didn't matter; I was concerned about my stimulator. I know that the wires can dislodge after a jolt (usually a car accident or a big fall) and I wanted to make sure everything was in place. I'm sure the poor Costco manager was wishing it had happened to someone who didn't recently have brain surgery, but that's the way it goes. 

I went to the ER and got X-Rays as well as a CT Scan. Luckily everything was in place and I was discharged after a few hours. My hospital experience made me wish I was back in Sacramento with knowledgeable doctors because everyone at Renown looked at me like I had a second head when I told them about my stimulator. I have been considering finding a neurologist and neurosurgeon here in case I need anything, but so far I do not have much confidence in the doctors in Reno. Perhaps it's worth the two hour drive to visit UC Davis. 

I will need physical therapy because I pulled my back out. I hate physical therapy. I have had many experiences with it in the past and while it does help, I don't enjoy going (especially at this age, I'm too young!). This fall made me even more thankful that I do not have the stimulator battery pack in my back because there is no doubt I would have caused some damage. As anyone who has had this surgery knows, the fear of a revision surgery is real and always looming. Hopefully as time goes on I will think of it less and less. But for now, I am still treating my body with kid gloves. 

I have been trying to taper off the pain killers, but every time I try I seem to hurt myself. I am truly struggling with this and it brings me a lot of shame. I thought it would be easier than it has become. I'm really not on a high dose, and I don't believe I'm addicted because I'm taking less than prescribed. Yet I know that my body is dependent. What it really boils down it is I'm afraid of going off of them because I am petrified of being in pain. The funny thing is I also know that I'm in more pain because I'm on opiates and once I get off I'll be amazed at how good I feel. I'm just scared. I don't want to go off of them and have to go back on. I'm seriously looking into doing a detox program through a local rehab center. I know my insurance will cover it, I just want to make sure I'm not branded an "addict." 

I so wish there were more doctors out there that understood chronic pain and opiate use. Before I came across my correct headache diagnosis (hemicrania continua) and the ONS surgery I applied to go to a pain rehab clinic. It looked amazing: mornings were spent with a counselor that understood pain, afternoons were spent doing exercises and learning meditation. Basically, they taught you have to live a modified, but normal, life without medication. I soon found out they did not take headache patients. I was devastated, which sent me on a search for somewhere that did. To my dismay I could not find any. There were several headache specialty clinics, but nothing to help cope with chronic pain. I suppose that is part of the reason I was so gung-ho about the surgery. I knew that I didn't have many other options and I certainly didn't want to be on opiates the rest of my life. Perhaps one day doctors will stop throwing pills at people and teach them how to deal with pain, but maybe that's just wishful thinking.

I found this website very helpful when trying to deal with chronic pain. The books that they sell are amazing and I highly recommend them. 

http://www.theacpa.org/

And their store:

http://acpa.stores.yahoo.net/

A Month Already?

I can't believe how long it's been since I last blogged. I have done so much! Spent a week at the beach with my amazing boyfriend, a week back at my mom's house in Sacramento, completely redoing my front porch (oh the joys of buying a foreclosed home!), daily walks with my dog and getting ready for school. All of those little things are so much easier to handle now that I don't have horrible headaches.

I use my stimulator sporadically. I will turn it on when my pain reaches a 2 or 3 and generally leave it on for a full day. I notice the stimulation is stronger when I press on my forehead, so sleeping on my stomach can be a little uncomfortable. Usually around hour 25 it really starts to annoy me, so I'll switch it off for a day or two. Then the cycle starts again.

Something I have really been struggling with is getting off of pain killers. I wasn't sure if I should broach this subject, but I think it's important. My use of opiates has been fairly consistent over the past few years. I have never had an addiction problem, yet I often do not discuss my usage because many people do not understand taking them responsibly. I always hear a story about how it's only a matter of time before I become an addict.

I strongly believe that to become addicted to opiates you can't be in pain. At least not chronic, overwhelming pain like many of us are. There are some doctors who do not believe in prescribing pain killers unless a person is terminally ill. This is beyond frustrating to those suffering with chronic pain. To be honest, those pills saved my life. There were days when I was so hopeless and in such dire pain that I was suicidal. However, there are also doctors that will hand out prescriptions like candy, and these doctors cheapen the real pain that some people are in.

What I am having issues with is physical dependence. Much different from mental addiction. I don't think I realized how much my body needs this medication. I've been trying to wean off slowly, but it's easier said than done. I just can't wait to be done with them!

Home at Last

I drove the few hours back home a little over a week ago. To say I was nervous would be an understatement. I hadn't driven in probably two months and I wasn't ready to leave the comfort of my mom's house. I think I was overwhelmed. It feels like I'm mostly out of pain and now I should get right back to my old life- working at least 25 hours a week and going to school full time. I mean, why wouldn't I? I feel overwhelmed. So I'm trying to take things one step at a time and give myself a break.

I am enjoying being out of pain. It's been 4 years, which, at 25, might as well be a lifetime. To say that I'm completely pain free would be a lie, yet it's minimal and I can handle it. Sometimes the stimulator bugs me. I can't exactly explain why, but I just turn it off to give myself a break. I have it on for the majority of my day and I usually sleep with it on. I keep it very low, around 1-1.5. The power goes up to 10 (or so I'm told, I turned it up to 3 and it really started to hurt). I also found that keeping the pulse width low (25-40) gives me more relief than turning it higher. I have 4 different programs I can choose from (A1, A2, B1 and B2). They are all a bit different and I usually stick with the A's. The B's seem to irritate my scalp which makes it itch.

I'm trying a new scar removal patch. I bought Bio Oil and despite the label that told me it was not oily, it really was. I let it dry for an hour then put on a shirt and stained it. So I bought ScarAway silicone patches since they are supposed to work well and they were affordable ($20 for 8 weeks). I know they are not the highest rated on the market, but I couldn't afford the $50+ for the Cica Care which are supposed to be the best. I enjoy the patches since they do not get in my way at all. I put them on at night, leave it on for 12 hours and take it off. Each patch is good for one week and you get eight in a box.

I have been trying to push myself to get out of bed and do something every day. My stamina is totally shot and I get exhausted easily. I know that it's going to take a while until I'm "normal" but it's almost fun working up to that goal. Next week my boyfriend and I are taking a vacation. We'll be going to the California coast and camping. But not real camping, KOA camping with cabins and all since I'm not quite up to sleeping on the ground.

Heading Home

I'm going to be going back to Nevada in a few days. This means I'll have to return to a normal life where I won't have most of my meals cooked for me, I'll have to do the dishes, my dog will have to be walked (I will miss just letting her out to romp on my mother's five acres), and of course, school next month. I have been very lucky that my mom has been so supportive and such a big help during my recovery. Part of me doesn't want to leave, but I'm bored. I personally consider boredom to be a good sign since it means I'm feeling well enough to be somewhere other than in my bed watching tv. My stamina is ridiculously low and I figure it will take a long time to build it up. That task is daunting and I'm not sure what my future looks like. When I was sick I thought getting out of pain was my whole battle, but I was wrong. There are emotional/psychological issues that I need to deal with now that I can.

I finally got my stimulator programmed correctly. I told my rep that I was unhappy with Mike, the rep that was at my revision surgery so she met me at my general practitioner's office. Turns out Mike did not change the programming at all after my stimulator was repaired, despite the fact that I told him before and after the surgery that it needed to be fixed. It frustrates me I was in pain for a week and a half longer than I needed to be, yet there is nothing I can do about it now.

I went to my post-op on Thursday with my neurosurgeon. He took the time to answer every question I had which I really needed. I wanted to know if I am able to get pregnant and have a fairly normal pregnancy with the stimulator (though I absolutely am not planning on children for years) and he said I should be fine. I asked him if I'm going to run into an problems with the battery pack moving if I lose weight. He said it might shift depending on how much I lose and I may need a revision at that point. I've been having some shoulder pain caused by the tight wires in my neck and he suggested physical therapy before it heals. I feel more confident about it all now and I'm ready to be done with doctors for a while.

My stimulator is still giving me great pain relief. It seems I get some soreness if it's turned up too high just because the wires are in a very sensitive area. I get frustrated with it all sometimes though. It's not that the sensation is annoying, it just gets frustrating to need it so often. I am hoping with time I will be able to use it less and less.

Revision Complete

I know it's been a week since my surgery but I haven't felt like rehashing the experience. It was not pleasant. However, my stimulator was fixed and in the end that's all that matters. The battery pack had tipped forward which made it stop working. My surgeon made a new pouch, put the battery pack upright and stitched me back up. My Medtronics rep was out of town, so I did not know the rep who was there that day. Unfortunately he did not reprogram my stimulator after surgery, so I'm not getting any pain relief. Luckily tomorrow I have an appointment to get my stitches out and my rep is going to meet me there to fix the programming.

I'm sorry if I seem pessimistic. This has all just been so hard. I am beyond frustrated. My mom is trying to remind me that my headache will be gone soon, but it feels like forever away. At least my stomach looks way better than the last surgery, plus it doesn't hurt as much either. If all goes as planned I'll be able to go back to Nevada next week and start my life again, which is both scary and incredibly exciting.

Rough Pre-Op, Surgery Tomorrow

Yesterday was my pre-op appointment. I thought my last pre-op was bad, but this one was so much worse. I got there at 2 pm, had my blood drawn and then sat around for 3 hours until I saw a nurse practitioner. At one point I started crying because I was in so much pain and they were making me wait too long. One of the nurses took pity on me and let me move from the waiting room to a private room, gave me some ice and apologized profusely. The nurse practitioner finally came in, hours after my appointment, and was completely useless. I had several questions that she couldn't answer. She kept saying, "Ask Dr. Boggan when you see him the day of the surgery." Not what I needed to hear. Especially since I wanted to know where they plan on placing my battery pack, are the wires going to be lengthened so that it's not so tight in my neck, etc. She also told me that I won't get IV pain medications, even though I will be in a lot of pain. That upset me. I didn't ask for this surgery. If it was done right the first time, I won't have to go back in. I'm not an addict trying to get a fix. I'm a woman who has been in pain for over 1,300 days and I would much rather not have to hurt any more. I really don't think that's too much to ask. It makes me wonder, when did this "professional", who has worked in neurosurgery for years, lose her compassion? I've sure that my doctor, who I truly respect, will make sure I am as comfortable as possible while I'm in the hospital. I just needed some reassurance yesterday.

Tomorrow is my surgery. I like to think of it as a "do-over." I am so tired. Emotionally I am completely drained. Physically, well, I feel like a mess. I am thankful that I get to have a revision quickly and may be able to salvage a little bit of the summer. It's strange to think that tomorrow I'll be able to use my stimulator again. I'm glad the battery is going to be moved, since it's sticking out right now (which I don't think it's supposed to do), yet I'm not sure where they are going to put it next. That makes me nervous. My hope is we get it right this time. And I'm able to recover quickly.