What I've Learned From the Pain

One Year and One Day Later...

2011-12-22T12:23:00.000-06:00

I know I've been gone a while. An update on why will follow soon but yesterday was a big day for me. I missed out on writing this then because I had a nasty stomach bug so I'm writing today. Yesterday was my one year anniversary of my final stim surgery and I wanted to celebrate here a bit!
When we were fighting for my surgery I dreamed of pain improvement. I was hoping things would become more tolerable. I never expected the miracle I have received.I still have days where I feel slight pain but most days I forget I have Occipital Neuralgia. After 25 years of near constant pain, you can't imagine what an amazing gift that is. The biggest pain in my life these days is frequent charging and when I get frustrated by that I think back to what life was like and it seems pretty petty.
This has been one of the most difficult years of my life.With my current struggles with bipolar, personal strife, and preparing for a cross-country move, I can't imagine what this last year would have been like if I was still also in severe pain. My stimulator has truly been a life saver.
I talk to many people who have stims for their headaches and they only get minimal to partial relief. I know I am blessed to have such complete coverage of my pain. I do not thank God often enough for that. Sounds like a good New Year's resolution that I should start working on today.
This last year would not have been possible without four very special people in my life: Jennifer Jaff, the attorney who helped us win my battle against my insurance company; Dr. Michael Vicente, the doctor who helps get me through the rough parts; Amy Kincaid, the St. Jude rep. who I really believe is my angel on Earth (I will miss her so in Houston!); and of course, Jim, my husband who can not be thanked enough for all he's put up with and done for me over the last 13 years. Thank you all. Those words just will never seem like enough.
2011 has been a year of healing. I look forward to 2012 and hope that it can be a year of living!

Charging on the Go

2011-10-13T12:08:00.000-05:00

Charging still seems to be the thrilling story of the moment. This week I took charging on the go to a new level. I charged while paining my kitchen, ceiling and all.

It worked really well considering I had sweat pants on so I had to wear a belt to hold the charger. I just tucked the paddle in my underwear and that all seemed to work just fine. I got two jobs done at once.

No more waiting to charge!

Run on Electricicty

2011-09-24T20:08:00.000-05:00

It's been a while since I've posted.I went to Dr. Kopell and things had been going fine.But what I have noticed is just how frequently I have to charge. It used to be once every week or two. Now if I don't charge every other day., my unit dies. My programs are that much stronger. I've gotten better at it but it still seems like a lot.
I'll try to blog more often to report on my status.

Big Problem Becomes Little Problem

2011-08-14T10:33:00.001-05:00

When I left you I was concerned. I only had one of my three programs and Amy, my rep, who wasn't going to be able to make my appointment had given me some options that scared me a bit. Some involved the prospect of surgery to remove scar tissue (at least this was my interpretation.)

We got to Froedtert early which was bad because you never get in early, you just wait. Finally we got called into a room and then things didn't take too long. Brian and another St. Jude rep came in. Brian started asking me questions and working on my programmer right away. The other rep kept Jim entertained!

Brian got a nurse to pull up my x-ray which was cool. I got to see the four electrodes on each side of my head that make up my paddles. They look like watch batteries.

Then he went to work re-programming my programmer and stim. I had one program that worked. He made that much stronger. He fixed the third program that had been defaulting to a weaker setting. It's my favorite now. He also added a second program where one did not exist. It is important to me to have some choice especially when my pain changes so I feel content in knowing I have both variety and intensity now. It is also good to know they can program around scar tissue to some degree.

Brian put them in my programmer from his computer and made sure I could run them. Then it was the moment of truth. Dr. Wonderful visited. It lasted maybe two minutes. I had to do a pain scale. (Maybe a 3) and then he asked to see my scars- all of them. They know I'm moving to Houston so they had me sign a waiver for my records and wished me well and that was about it.( I'm working with St. Jude to find a neurosurgeon down there.)

A much better ending to a problem I was worried was going to have a bigger mess of an ending. Only problem now is I run much higher so I have to charge more often, probably ever 2-3 days. Not the worst problem in the world. I'm charging now while I write you!

ON Pain Today

2011-08-08T21:12:00.000-05:00

I haven't been around for a bit and I wish I could say that's because everything's been peachy keen with the stim. Truth is I don't know what's going on so I really didn't know what to say about it. My stim isn't working right. Hasn't been for about three months and it's getting worse. I finally go in two days so Dr. Wonderful and his crew can try and figure out what's going on. Let me explain it the best I can:

I have three programs on my stim. I have to switch them every few days so my brain doesn't get used to the stimulation pattern. Right now only one of my programs works right. The other two turn themselves down when I turn them up. I know this because I watch the display on my programmer.

This is a problem because without adequate programs to switch to my brain gets use to what it feels and then it feels pain. It has been a long month (that's when the second of my third programs gave out. My doctor has been on vacation most of July and there is only one day a week he can see me for this so it is taking me over a month to get in.

I'm nervous and I hurt. I hope it's a problem with my programmer and not something that requires surgery to fix. It's almost as if the stim shorts out when I tell it I need power.

I'm busy right now with so many stressors (including my bipolar still not being well controlled) that I need to be pain free. I hope Wednesday brings some answers.

Flying with My Stim

2011-07-25T13:47:00.000-05:00

I finally got back from Disney World (and have some time to write) so I thought I'd report on flying with my stimulator. It was pretty uneventful both ways even though the heightened security warnings came while I was in Florida about terrorist surgically implanting bombs in themselves, making me worry that my implant would be of greater concern. It apparently wasn't.
Leaving Milwaukee was no problem at all. I showed my card but no one cared. I walked through, picked up my stuff and went on my merry way. The scanner did not identify me as needing additional screening.

In Orlando, on the way home, the security person asked me what my card was when I handed it to her with my ID. I explained it was for a stimulator I had implanted. She said she didn't need that. When I went through the scanner I was a dope and had forgotten to take my phone out of my pocket. When they asked me to, they also asked me to empty my back pocket. I knew that pocket was empty. I explained it was empty but I motioned that I had a stimulator implanted there. They said they didn't need to see it and did a very brief pat down of the area. I waited for my phone to be x-rayed and I was done.
Big excitement. I look forward to the fact that I will be on a plane 4-5 times yet before the end of the year. Hopefully it continues to go this smoothly.

Coming soon.... charging at Disney and the new experience of going on rides with this thing....plus what the heck did I do to my stim (we won't know until August 10th.)

Wondering About the Happiest Place on Earth and Stims

2011-06-22T20:40:00.000-05:00

I leave in a week for Orlando. I'm excited, but nervous too.

It's my first time flying with a stim. Security will mean a pat down after showing them my card. I'll also have my programmer and charger in my carry-on because I'd never check either. More to carry-on!

I'm still trying to figure out the parks. I think my programmer will be in a locker at the front of the park, in case I need it. I have decided, sadly enough, to give up the roller coasters and really rough rides. The paddles in my neck mean too much to me to put them at risk even though I love the rides. I might be able to do them and be fine, but if I did one and it ruined my trip I would be so upset.

I need to charge every three days for about 2 hours. I do not have time for this. I'm thinking of duck taping my charger to my butt and doing it while I sleep. I really don't know about this one.

Stay tuned. I'll let you know how my 10 day trip goes!

Amy Has Me Running Right Again

2011-06-08T08:07:00.000-05:00

As I stated last time, my stim was causing me some grief. It was doing some funky things and not giving me the proper stimulation to control my pain.
Yesterday I met with my favorite St. Jude rep at my doctor's office and we figured out what was going on.
Part of the problem is normal scar tissue is developing so my programs needed to be increased . That wasn't a big deal. My head got a little sore from all the options we tried but I know that's a short term condition. In the end it will benefit me to have programs that work so much better.
The other thing is my program number 2 seems to max-out as if it's drawing too much power from my battery. It still works for what I need it for but Amy is checking with the tech guys to make sure it isn't a big issue.
I was relieved to find out it wasn't anything that was going to require surgery. I now know scar tissue is part of the deal and nothing to be afraid of. Although if it means my paddles have to be adjusted down the line, I may get very afraid. Read my surgery story at the left. The paddles didn't go so well for me! But I'm hopeful that won't happen and we can stick to these minor adjustments. It takes a day or two to come back from them but ten life goes on.

Games My Stim Wants to Play

2011-06-05T18:41:00.000-05:00

Ok, actually it's my programmer(remote control) playing games with me. That's the device I use to control my stimulator. It's not behaving the way it should. I'm in touch with Amy, my most wonderful St. Jude rep, but we don't have a time to meet yet. Let me explain what's going on.

The guilty device

I've had some Occipital Neuralgia pain for the last couple weeks. I believed this was due to some additional stress in my life. Now I think it is related to my quirky device. I started to piece this together last week when I tried to change my program and got an error message on my programmer. It read "Corrupt Program". I changed the batteries in my programmer and it did it again but I was able to still change my program. I e-mailed Amy to be on the safe side. She left me a message saying it may have been a bad contact, old batteries, she wasn't sure but she would check it out with St. Jude.
Later that day I noticed I hadn't set my stim high enough so I went to turn it up. I noticed that two of my three programs were behaving oddly. I would try to turn them up but they wouldn't go up as far as I am able to adjust them and they would also turn themselves down a step or two when I did set them. It dawned on me that this was why I was in pain. I wasn't getting the stimulation that I needed. Again I emailed Amy. She agreed we needed to meet and we are working out those details now.
Luckily I have one program that is working pretty well. Unfortunately I will need to switch off of it in a day or so because my brain becomes used to it and I need to change to one of the others.
I'll let you know how things turn out!

Life on the Road

2011-05-25T12:25:00.000-05:00

So we've taken a mini-road trip. Business for Jim, a few days out of the house for me- to Kalamazoo. Fun right? Well parts of it have been great and very relaxing. But getting here was tough!
We live 5 1/2 hours away from Kalamazoo. When you have to go through Chicago at Rush Hour and there is construction everywhere, I think our total time was closer to 7. That is a long time in a car for a neck that has been sore lately. Around Chicago, I broke down and did something I haven't done in months. I took Tylox. That's a capsule version of Percoset. I was desperate.
Luckily it actually took the edge off and made the rest of the trip bearable. I even managed not to get bitchy which is one of the drugs major side effects. Jim and I had a nice trip thanks to the Hertz NeverLost Lady.
We arrived at the Best Western and were given our room keys. Our room is right next to the pool and hot tub! I no more had our stuff in from the car than I was pulling on my suit and trying things out. Jim joined me in the hot tub and we relaxed for a bit.
That Tylox actually helped me get a good night's sleep (that and the king size bed). I spent yesterday breaking hotel policy by solo hot tubbing multiple times. It was gorgeous here in Kalamazoo and it was so relaxing in the hot tub. Jim and I had a great time in the pool last night. Neck was good until we got back from dinner. Stress is doing me in right now at certain times. I'm working on managing that because it really causes me pain.
Today it is storming here and I haven't hot tubbed yet but I think I should. We're suppose to visit the downtown tonight but the weather may change our plans.
Tomorrow's drive home won't be fun but maybe we can stop more since we'll be leaving earlier in the morning. I can't wait to be back on central time as this time change is goofy!
This has been a good test of my readiness for Orlando at the end of June. I can tell I need to build my endurance some but I'm doing ok. I'd be doing great if I could control this neck pain again but I'll get there.

New Bump in the Road

2011-05-19T11:09:00.000-05:00

Over the last few days I have made an unwelcome discovery. Extreme stress (let's not go into it) can cause me to tighten my neck muscles. I always knew that was part of my problem with my ON but since surgery and the stim it hasn't been an issue.
Well the past few days it HAS been an issue. At first I thought I needed my stim higher but that made things worse. This feels more like my paddles are pulling funny. And I don't mean funny in a way that makes me laugh.
I've tried my SootheAway which helps a bit but basically I have to just rest my neck which an ADHD bipolar person can't do during the day.
I need less stress and the outlook on that isn't so hot right now. I feel like I'm back to living with pain which adds to my stress. I know this is temporary but patience is no longer in my vocabulary.
To top things off I talk to a psychologist for social security today. I knew him when I was little. It will be interesting to see if he remembers me. Ah... more stress :)

Slow learner

2011-05-17T09:07:00.000-05:00

After five and a half months I've finally figured out this charging thing!!! No it's really not that hard. I'm just that dense.
I had been trying to let my stim run down too low and then it took a long time to charge. I have a new plan now that works great.
Two or even three times a week when my stim says it's a third of the way empty, I charge. The nice thing is it doesn't take long at all. In the time it takes me to write this entry and check my Facebook I'll be good to go. My bipolar ADHD was making 90 minute charging sessions a real drag so this works much better. Plus according to Amy my St. Jude rep. Keeping my battery charged will actually extend it's life. Eleven years sounds great to me!
The other thing I'm doing that I wasn't before is charging my charger each time between times. I used to go two or even three charges before I'd charge it and it really slowed my charge time down.
Living with a stim that works as well as mine becomes all about how to make life as normal as possible. I don't want to spend a lot of time hooked up to a charger. Learning how to shave time of my charging while still providing the care that I need is what it's all about.
By the way, I still love my stim more and more every day and thank God that I was lucky enough to get one. I have had a life for almost six months now that I couldn't imagine before this. It is a miracle and a blessing and well worth the rough patches I endured to get it.

Hard to move beyond Status Quo

2011-05-16T21:07:00.000-05:00

I had a great day today. Then my legs were taken out at the knees with some unexpected bad news, setting me back yet again. I can't move forward until I am allowed to confront my demons of the past and that keeps getting put off. It makes me want to scream.
Limbo is no where to live a life yet I do every day.I need to make some decisions for myself and move on. Waiting , only to be put off again is not how I want to play this.It tears me open anew each time.
I do with I had come first and been the choice made rather than the thing put off, but that is quite telling as well.
The hurting has to stop and I do have the power to end that. I just have to do it.
I will channel all this energy into good projects that need to be done. I will make success where I feel loss, I can do this.

Girl in the Bubble Ventures Out and Pays the Price

2011-05-04T08:32:00.000-05:00

Since September 17th, 2011, I have been protected from the constant barrage of germs that go with teaching. I was once of those people who never got my teacher immunity. I just stayed sick all year long. I even got H1N1 from a nice lad whose mom didn't think it would hurt to send him with it. When he threw up on me I knew I was a gonner.

Anyway for the past nine months the only places I've been are the store and the doctor's office.I keep to myself. Jim works with a healthy crew.

So why do I have a fever of 102? Why do I hurt everywhere?

Easter lunch.

I ventured out of my bubble and even hugged a sick child.It was a quick hug but both Jim and I did it.

being sick with th stim isn't fun. I feel like the heat concentrates on my battery in my butt.I'd try the Soothe Away but I have the chills too bad. I know nothings wrong, I just tend to ache there when I ache

Nine months without being sick has got to be a record for me!!!

Fewer After Four

2011-05-02T07:21:00.000-05:00

It's been just over four months since my final surgery to implant my occipital nerve stimulator and I have to say I have fewer complaints after four.

Nothing is perfect. I still know I have my stim and I suspect I always will but it's rarely a negative these days. My big problem these days is I love program #1 on my stim and hate when I have to change to give my brain a different rhythm every now and again. I cheat and change to program 2 or 3 for 5 minutes and then turn back to #1. That and remembering to charge. I still like to pretend I'm normal now and just don't get head pain magically. I often remember when the ON kicks in nick and strong.

After four months I have a pretty headache free life. That amazes me! I do want to do more to educate doctors who do this procedure so that they better educate us when we have the procedure done. We shouldn't need to struggle during such a stressful time. I had three months where I lived every day in fear of having my wires revised and for no reason- I was just healing. Also more should be done for pain than pain pills. My friend Emily turned me on to Lidocaine patches (Thank God!!!) but my doctor should have.

I just want more to be done for us post surgery until we get to this point. Because this point is SO worth getting to!

Just a Boring, Good Day

2011-04-30T19:09:00.000-05:00

Thought I'd let you know it's not all drama.

Today even though I woke up tired I was motivated to press on: rummage sales. The first of the season.

I had bought a chair to reupholster yesterday and Jim and I had to pick it up today. It filled the Element. We brought it home, put it in the garage, replenished our cash and drove about a half hour away where they had a 104 house rummage sale. We hit around 30 of them. I call it therapy. Plenty of Mickey. Found a great table to refinish for the living room (might be a "game table") Lots of walking in the fresh air. It was great. I felt great. Tired when we were done but I think most people were today.

I'm telling you this here because I do want you to know I get out and try to find moments of "better-ness". Today was filled with them.

P.S. If I get a picture of my chair I'll include it here. It needs work but who doesn't.

Walking Zombie

2011-04-25T09:09:00.000-05:00

This zombie has been here before....a long time ago.

Jim loves zombies. He should be thrilled with me lately.

I feel like the walking dead.

No desire to partake in eating flesh. I don't eat much at all exactly. But I stumble through the day lately. It frustrates me to no end.

My brain has "Bipolar ADD". I put that in quotes because I think I made that up. My brain never stops going unless subdued to stop by drugs to sleep. That's why I list. Now my brain is trapped inside my zombie body.

My zombie body comes about in an effort to fix my head. It is working a bit. I am less hostile. But it also makes my body very tired ALL day long. I wake up exhausted. My muscles feel sore and heavy. Even my vision is constantly affected so my computer use is even a challenge (the horror!!!) I am experimenting with eating more and adding some fat because Geodon apparently metabolizes differently. I don't know if that's helping. I hope to ride this out as a benefits outweigh the cost thing.

I think it is a math equation: 1800mg Lithium + 25mg Serequel + 10 mg Ambien+ 120mg Geodon + 600mg Zonisamide= Zombie (and those are only the drugs I suspect make me tired. Could be others I take.) But what do I know I suck at math. Most zombies do.

Thanks once again...

2011-04-24T23:41:00.000-05:00

I have said this to many before. I am appreciative of Catherine Zeta Jones and other public figures who come out with my disease. It brings better attention than say... Charlie Sheen. But while I thank her she did not invent this either. Some of us have willingly openly struggled for years and for the same reasons she came out: There is no shame in it and it is only a health condition. We assign the shame.
If we'd all wise up and take down this veil around mental health we'd make life for those who struggle much easier and make getting help something that can be done without second though.
I feel blessed that I have always had this belief and strength. It has made my struggle that much easier.

On the Move

2011-04-21T22:17:00.000-05:00

I tried something yesterday with my stim. And it worked!

We were running yet again to the store for more for gardening and our remodel. I knew I needed to recharge and I had not been so good about remembering (the "bipolar ADD" is horrible lately). I decided to take the show on the road.

I put on jeans with a belt and a sweatshirt with pockets. I put my charger on my butt and the unit in my pocket. I was ready to roll!

At first I beeped a lot. That means my charger isn't aligned with my battery. I'd adjust and go again. I could do that while walking. Then things were good for a long time until I bent to look at seed potatoes. I was messed up again. But I easily got back on track.

When I got home the beeping wouldn't stop. I was annoyed. I looked at my unit and realized I was fully charged. It hadn't taken long at all.

Mobile charging was a success. Disney dining watch out for me!!!

Medicine Mambo

2011-04-17T22:09:00.000-05:00

I am not a graceful dancer. I never have been. I usually like doing it and don't care what anyone thinks.

Medicine Mambo is a little different.I dance around with different drugs, attempting to find the right partners (a group is allowed in this dance.) You may change doses or drugs, times drugs are taken, even whether or not you eat with a drug. This is one complicated dance. I have a hard time with the footsteps because they keep changing.

I am currently Mamboing again. Part of the challenge is finding a drug that won't upset my headaches.Another is have I been on it before and were we successful partners in the past. Topomax and I have been partners before and it was considered again. I declined over fears I had about how rude it was in the past. It actually stole (my memory) from me and has yet to give it back.

Having found a suitable partner(Geodon) I now struggle with a new partner and all the get-to -know-you side effects. Sleepy at times. Efficient at times. Even a runny nose.I think if I can get the timing down, we can learn this dance.

As long as the other 27 pills I take each day remember their place on my dance ticket, we'll be just fine.

Remember When?

2011-04-15T11:19:00.000-05:00

Remember what it felt like to be 5 and lost in a big store? Scared. Alone. Crying.

Now imagine you're 38. It's Walmart. You know physically where you are but everything else is the same.

That's how I felt the other day when I had a panic attack because I got separated from Jim at the store. I had said, "I'm going to look at crafts for one second. Wait here." He hears nothing I say and walked on.

Normal Kristin- no problem. Bipolar Kristin- big problem.

I searched everywhere trying not to freak. It didn't work. Luckily my crying is not hugely noticeable (comes from my headache days). He finally comes walking toward me from the pet department (where I swear I checked) and can see I'm visibly upset. I calm down. Episode ends.

Jim is my compass right now. My sense of direction. What a heavy burden for someone his age to carry. We don't always do it gracefully, but I'm so glad and lucky he's here to help me down the right path. I can't wait until I'm ready to walk next to him again rather than needing him to lead me. I'll get there.

Now if only I could have an MRI...

2011-04-14T15:29:00.000-05:00

When I had my stim placed I was happy no more MRI's. I'd had enough for a lifetime. Now I watched a video clip on Bipolar Disorder and I wonder... I know there are companies working on MRI's that you can have if you have metal in you. They better get going :) BTW check out the link at the left(above the Barnes and Noble ad). It describes the four main types of Bipolar Disorder. I have lucky number 2.

On Order...

2011-04-13T12:04:00.000-05:00

My new head toy....Soothe Away. Thanks to $500+ (each pad is additional to base unit)of Flex Spending it should be here soon. Updates will follow but here are pictures and links. It is able to heat or cool your head without ice.This should help with my head pain but also the paddle discomfort I've had. I'm very excited we had money put away for my surgery we didn't need to use on that!

http://sootheaway.com/

Occipital

Injection

Universal

Bat mask (ok, eyes)

Migraine

Oh, and it comes with a free car charger for on the road use! ...LOL

Still would like a new head please...

2011-04-12T10:32:00.000-05:00

I have no right to complain. Things are so much better than before. It's like a different life.

But I still want a different head. One that still doesn't hurt all the time(even if it is a lot less, so much so that I can tune it out compared to before.) I get tired of tuning it out sometimes. It makes me crabby and short with others.

Mostly I want a different head because when they tried to fix my headaches they made my bipolar worse and that has been such a struggle. I don't hear voices but my own voice is never quiet in my head. It is always so, so noisy in there. It is EXHAUSTING, yet without the right medicine I will not sleep.

I have lists and lists of things to do. Yet without the right medicine, I will do nothing. That's not true- I will make more lists.

Every time I think I see progress I slip back. I believe it will come but I feel so trapped. In this head. In this body. In this house. Jim gets me out on weekends and some nights but I won't go alone. I just don't trust myself or what's going on in my head.

I have the BEST doctor and an AMAZING husband. Too bad I got this CRAP head. :)

I am not a regular person...

2011-04-06T22:38:00.000-05:00

If you know me you're saying DUH!!! right about now.
I am forgetful beyond most. Sleep may have something to do with that but I'm like this when I do sleep too.
Today I was a genius and let my stim battery run out. Never thought to check as my head go more and more intense. I am a putz. A putz entrusted with $90,000 worth of equipment in my ass and head. I should get with it. But I don't. So now I sit here waiting for it to finish. It always takes its time when it's been on empty.
Little less chaos in my life and I'd be on a regular schedule. For now, this is the way I roll.

Today's entry was written by a repeat idiot who is bound to strike again.