Sunday, January 29, 2006

January 29, 2006 - one year later

One year ago today, my brother was at a bus station in downtown Charlotte waiting for a bus with a buddy of his. He'd been living there for a few years as one of the homeless that had taken refuge in the city. He and his buddy had managed to scrape together enough money to get a hotel room for the night. It was at that bus stop that he suffered the heart attack that took his life.

We didn't know till the next day that he was gone. It took that long for people to find his family since he carried no personal numbers or identification with him other than the basics. However, the police knew him, and the people from the homeless ministry he was active at and frequented knew him, and they identified him, tracked down his oldest daughter, and we found out that way.

My brother was a smart man. Unfortunately, he also suffered from BPD and, after the accident at a factory in Detroit that left him in chronic pain for over 20 years, the BPD led him through a series of circumstances to leave his wife and family and live on his own under a bridge where the sound of constant traffic soothed his tormented mind and gave him a sense of community.

He found a place where he felt he belonged. It's called Urban Ministry Center. The people there, staff and other homeless alike, accepted my brother for who he was instead of who they thought he should be, something he had struggled with his whole life. They didn't see him as a failure, as a man with an addiction to pain meds, as a man who smoked pot to leave behind for a few moments the ache in his back that had been his constant companion for such a long time that he had almost forgotten who we was without it, as a man who had been told by his wife upon catching him smoking some of that pot with his teenage son that he had to leave, and not come back. The people at this place in Charlotte saw his wit, and his caring, and his disregard for status, monetary position, education level, and color, and they loved him. They took him in and he became family to him, and they became family to him. They were what my dysfunctional gathering of people could never have been. They put no expectations on him other than to be who he was. They never chided him for his weaknesses. Instead, they encouraged him, and built him up, and just flat out loved him.

I met those people, and I understood why he loved them. They didn't care what color I was or how big I was or "who" I was. I was Ken's sister, and they loved him, and they loved me. It was that simple.

I saw the bridge under which was the place he called home when he couldn't get together enough money to rent a hotel room with a buddy or two. It spoke his life to me. It was his home. It had the same signature on it that was in his home in Detroit, or in his room in the house we lived in as young people. It was Ken. I have pictures of that place. His family - his ex-wife who just couldn't deal with the chronic pain and disappointment that 20 years of lost dreams brings and had to do what she had to do, and his 3 kids - haven't asked to see those pictures, but they will in time, and I have them here when they do. We found blankets there, blankets he used to cover himself and protect his body from the cold. I have those blankets. My sister took them to her house and washed them and mailed them to me. They are waiting for a new home, but it has to be right. I won't take them to a resale shop. He'd want them to go to someone without cost. He'd want them to go to someone who really needed them and just didn't have 2 or 3 or 5 dollars. He would have wanted them to be given away. I give by inspiration. Some day I'll come across someone out here who needs a blanket or two, and they will find a new home, one where they will be treasured.

I told my siblings I wanted to take my brother's place in the family. He was the outward rebel. My rebellion had been silenced by the years of abuse I couldn't get over. I didn't want to be silent any more. I wanted to step up and take his place.
I had no idea that this meant I would wake up almost 8 months later in the kind of pain that never goes away. I didn't know it meant I would learn more than I ever wanted to know about what went on in his head and heart.

See, we judge people based on our expectations of who we think they should be. I have let myself down now. I am no longer who or where I thought I would be at this stage in the game. I am disabled. I cannot work. This doesn't mean I can't work as a nurse. It means I can't work. I can't concentrate long enough at one time to do much of anything beyond simple, basic tasks. I can't stand noise of any kind long enough to even work at McDonald's. I can't focus well enough for long enough to drive a truck. I can't stand bright lights long enough to work in an office environment. After working since I was 12 at one job or another, I am now involuntarily dependent on the grace and kindness of someone else for my daily bread and a place to live.

It's quite a shock, this dependency. It throws a whole new light on things. It makes you look at each and every moment you have in a different light.
I can see why my brother didn't want help from the people he thought he had failed. However, having the benefit of hindsight, I can also see why my family, who had tried more than once to help him, felt they needed to try, and why they feel the need to try and help me now. My mom sends me money. My mother - my 72 year old mother - sends me $100 dollars a month and will continue to do so until my disability comes through, at which point I will reimburse her. My daughters buy us groceries and put gas in my van. My sister wants to pay me to make her a quilt. I was going to gift it to her anyhow, but my mom told me when we discussed it to let her help me...that maybe she was trying to help without saying I will make the quilt, and I will let her pay me for it, though I would have given it to her for free had I been given the opportunity.

It's not just about me, you see...and I have to keep my eyes off my belly button and try not to succumb to "I" strain. My family has the need to help me. It is part of my obligation to let them do that, because, in part, they tried to help Ken and he, being past the point of seeing clearly in this part of his situation, did not accept their help. My brother sent him money orders. He doesn't know if they were ever cashed or not. We tried to find him, and he didn't want our help. Now they want to help me, and I need to let them do that even if it bites at my self-sufficient tendencies and fierce independence - because it's not all about me. It's about me and my mom and my sisters and my living brother and the people who care about me and want me around and need to know that I am okay even if I can't see my way out of a cardboard box at this very moment in time.

I remember I used to tease people about not depriving me of the opportunity to bless them when they were in need and I had something they needed. I'm learning that on a first-term basis now. It's hard learning to accept. It's much easier for me to give than it is to let someone give to me.

In memory of my brother, I will let them give to me, and I will thank God for the opportunity to allow them to be blessed by giving what and how and when they can, and I will be grateful that I can learn this lesson, whatever it is, from the inside out.

Ken, may you rest in peace. May you not be forgotten by the ones who loved you - your biological family or the community of homeless in Charlotte, North Carolina who called you their own and who saw in you what we never could because we were blinded by the ties of earthly family.

You were a good man.

Friday, January 27, 2006

I need to vent before I explode.

If I hear one more person tell me that caffeine is triggering these headaches I'm gonna smack them.

I am sick and tired of people telling me that I'm doing something wrong by drinking diet pop when I've been drinking it for 30 years, my doc says it's okay, and I know from personal experience that the migraine part of my headache cluster of problems gets worse when I don't get caffeine.

I also will not stop seeing this doc. I like him. He's trying. He treats me like a person.

I also will not stop taking the supplements I have to take because I had gastric bypass surgery. I need those supplements because I malabsorb nutrients and vitamins and unless I want to add malnutrition to my list of diagnoses I better keep taking them.

I have four diagnoses, not one. I have migraines. I have atypical trigeminal neuralgia, or TN2 as it is now called by some. I have occipital neuralgia. I have allodynia. I also have a very sensitive system that reacts quite strongly to new medication and unusual procedures, including nerve block shots in the head and the medications that should help control the pain I feel. That is why I am hard to treat. It is not because I am non-compliant. I keep a headache diary. I tell the doc every single time I take a Tylenol. He has a list of the meds I take on a daily basis as well as a list of the meds I've tried and don't tolerate, including the ones that should help me but don't because I swell up, break out in hives, feel like I'm falling into a deep black hole with no bottom, get tingling sensations from my head to my toes, have nightmares that cause me to wake up screaming, and various other oh-so-fun-and-unusual side effects.

I am doing the best I can. I am doing ALL I can.

I've lost my job. I've lost my income. I've lost the ability to walk in the sunshine and enjoy the feel of it on my face without the light triggering a migraine. I can't spend a whole day shopping, or spoiling my grandbabies, or doing ANYTHING any more except being sick.

So, until you are in my shoes for a while, and I'd be more than glad to let you have them for an indefinite amount of time, stop thinking you know what will "fix" me. I tried the simple stuff. It's where I started. We're now discussing the prospect of shots injected into my brain to permanently numb the nerves that cause the pain - the only problem is, they can cause lasting and irritating side effects like permanent facial numbness, difficulty chewing and swallowing, and tingling pain that I would have to deal with for the rest of my life. It scares the hell out of me. Or we have the newest treatment - an electrode implanted in my hypothalamus to stop the transmission of the nerve impulses - this one is only done in 3 places in the world; one being in Italy, one at the Mayo Clinic, and one who knows where.

Until you face my personal demons, don't presume to know what will chase them away. Trust me. I'm looking under rocks for a gun. The problem is, the bullets don't fit.

Thursday, January 26, 2006

colds and headaches

It's fun having a cold with these headaches. I can't tell if I'm hurting from the headache thing, the neuralgia thing, the allodynia thing, or the pressure from having gallons of extra fluid floating around in my sinuses.

I ended up rescheduling the spinal tap again. I just couldn't visualize trying to stay still on my side for over an hour when I'm coughing and sneezing like a fool. I'm halfway tempted to reschedule my neurosurgeon's appointment, too. I don't feel like doing much of anything right now, including but not limited to a drive to St. Louis to talk to someone who wants to put a big long fat needle in my head.

I'm in pain this morning. I took my 2 DHE pills for the week already and I took an entire extra extra strength Vicodin yesterday. I hate it when I hurt this much. It makes me miserable and doesn't help my tolerance of other people, either.

The stabbing pains above my right eye had fallen way off for a while, but as of yesterday they are back with a vengeance. I can't say I missed them but it was a pleasant interlude while it lasted. Now we're back to ouch, ouch, ouch again. I guess I should take more time to notice the little things that make life tolerable and appreciate them, even if they are merely the absence of one of the several pains I deal with on a regular basis now.

I'm thinking of taking a creative writing class online once we get our tax refund and I have a few extra dollars. Going somewhere for a class where I have to deal with people talking and chattering and breathing in my space is beyond my capabilities at this point in time, but I think I might be able to handle something online where I can interact at my own tolerance level.

Gosh, my head hurts...

Monday, January 23, 2006

Things have changed

Things I used to do that I can't do any more:

Turn up the TV or stereo until it won't go any higher
Run all over creation looking for nothing in particular
Go to church
Go to any place that's too loud or too busy
Spend much time with family other than hubby
Go to showers, birthday parties, holiday celebrations

Things I spend a lot more time doing:

Listening to the ever-increasing volume of ringing in my ears
Worrying about finances
Worrying about what is going on inside my head
Wondering if life will ever be like it used to be
Apologizing for having to cancel plans, trips, holiday celebrations
Staying at home in my sweats
Feeling antisocial

I'm supposed to go for the spinal tap tomorrow morning. I'm coming down with a bad cold and cough so I don't know if I should reschedule it again or not. It might be hard lying still if I'm coughing up a lung. The increased pressure in my head does wonders for how I'm feeling and what I can tolerate, of course.

Sleep...I want to sleep...maybe I'll wake up and find this has all been a bad dream.

Sunday, January 15, 2006

this is what he wants to do next

"Radiofrequency trigeminal rhizotomy is effective for trigeminal neuralgia, a rare but severe cause of facial pain, according to a review of a large number of cases in the March issue of Neurosurgery. This procedure involves the insertion of a needle near the trigeminal nerve and the use of a radiofrequency-producing electrode to generate heat that damages the abnormally sensitive nerve, impairing its ability to transmit pain and other sensory information. Turkish researchers reported on over 1,600 patients treated by radiofrequency trigeminal rhizotomy over a 25-year period. Although 25% needed at least one repeat procedure, 92% said their pain had faded 5 years after the initial treatment. More than half of the subjects received complete pain relief after one procedure, according to the report. Possible complications include weakness or paralysis in facial muscles. Patients with trigeminal neuralgia are considered for surgical procedures such as radiofrequency trigeminal rhizotomy if their severe pain does not respond to medication." (from Headache News)

Day 100

That's a long time to be in pain.

I guess I'd better get used to it.

I don't like the sound of that, either.

Chronic pain is a funny thing. It's always there. It never goes away. It ebbs and flows, increases and wanes, but it's always, always there. It always reminds you of your limitations and that at any time you can become incapacitated by a surge of the power that controls the pain, and that power has nothing at all to do with you. It's out of your hands.

My brother lived with chronic pain for over 20 years. I didn't understand a lot of what he went through, even though I'm a nurse (when I can work) and I've dealt with chronic problems of my own for my whole life...depression, obesity, some twisted personality disorder that leads me to people who use and abuse me...

There are things in my mind now that make why he chose to live the way he did more and more clear with each passing day, and I'm only 100 days into this mess. Pain messes with your head. It's not just a physical thing, though mine certainly is considering the diagnoses I've been handed. It's emotional and psychological and it just plain screws up your thought processes and makes you wonder why in the world anyone would even want to be around you. You can barely stand yourself some days. The scene under the bridge makes more sense to me now than it ever did. Some of the things I knew about Ken become increasingly relevant as time passes and I learn what it's like to never be without that companion called pain.

God works in mysterious ways indeed...

Thursday, January 12, 2006

struggling to keep my perspective

So the doc said this morning that because I reacted so badly to the Tegretol, and because the Diamox obviously didn't agree with me, we're back to square one, or maybe one and a half.

That was so encouraging...

Tomorrow I need to call and re-schedule the spinal tap. Apparently there was some seriously screwed-up communication between my doc and the hospital where I was scheduled to have it done and the things he wanted done, and faxed the orders for, never made it to the proper place.

Now he's talking nerve shots in the head again by an anesthesiologist and, if that fails, possibly an implant in the hypothalamus, though I'd have to go to Mayo or Italy to get that done...


We seem to be on a downhill run here.

I'm quite frankly getting discouraged.

I'm surprised it took this long, really. It's been over 3 months now. However, things were okay until this week when we had to shut some things off and change some things in a serious way to keep ourselves solvent, and it's starting to sink in, I think, that this isn't necessarily going to go away in any certain amount of time.

I'm trying to keep my head above water.

I'll make it...I'm just treading today, though.

Monday, January 09, 2006

94 days in pain

This is getting old. Last week I had a bit of a reprieve but now my old friend is back with a vengeance. Not that I didn't have headaches last week, but they were mild as far as my headaches go. Starting yesterday the intensity returned. I hate what it's doing to my life. I have to cancel plans and stay in the dark house, trying to fight the pain. I don't like taking the meds unless I have to, and I don't think I have to unless it gets so bad I'm tempted to go to the ER.

I had plans for today. I'm not sure I'll see them all fulfilled. My youngest daughter needs to go to her WIC appointment, which I can handle, but she also wanted me to take her to their old place to pick up a bunch of stuff and I'm just not sure I can handle being out that long with my head doing what it's already doing this morning. We may have to do it tomorrow, or in two trips on two days instead of getting it all done at once.

I was going to go with oldest daughter to the mall yesterday and had to cancel that, too.

Thursday I see the headache doctor again. I'm going to talk with him about the deeper nerve block thing since the stuff I've seen on it indicates it's not all that successful with ATN. In fact, it usually makes things worse. Our family has a weird history of having strange side effects to things so I don't want to take a chance on something that might leave the right side of my head permanently numb if there's not a lot of data to back up that it works in the majority of cases. I just have too many freak things happen to me to play that game.

I slept most of yesterday away. I think I took 4 or 5 naps. I did get a crib quilt cut out but nothing beyond that. I didn't even cook dinner. Well, maybe I did...if chicken tenders in the toaster oven count as dinner. Anyhow, hubby had to take a frozen dinner to work today because we didn't have any leftovers for him to take. I feel crappy when I feel so crappy I can't even cook. That sucks.

If I wasn't out of some of my necessary meds I wouldn't go anywhere today, either, but I am out and have to go pick them up. I'm going to do the necessary shopping while I'm at WalMart and then I won't have to do much more in that area until the weekend. I know it's childish to say, but I'm splurging and getting Diet Pepsi for hubby and Diet Coke for me. I tried the generic stuff last time and it just doesn't quite cut it. I guess I'll just have to spend that extra 3 bucks to get the real stuff.

To take a pill or not to take a pill...not...I can't drive if I do, and I have to drive today...maybe some Extra Strength Tylenol will help a bit. I don't dare do the Vicodin or the DHE. They make me basically useless.

I'd like just an hour or two with no pain. I've forgotten how that feels.

Saturday, January 07, 2006

Same old same old

After a while even headaches fall into a routine. Start with one, sometimes it gets worse, take some medicine, take a nap, work on things when you can, don't when you can't...

I officially ended my job again. Somehow the person I gave the message to didn't get it to the other person so I had to send her an official letter. It was short and sweet but should do the trick. I hated quitting that job. I really liked it.

Things are getting tighter. I'm getting the cellphones shut off this coming week. I'm paring down our satellite service to the most basic package I can get. We've switched to a cheaper car insurance. If I can sell the Olds we'll be okay for a while.

My mom has offered to send us money. I don't want to take it but I don't want to offend her, either. She's a strange little bird. So, the money will go in our savings account and when my disability kicks in I'll send it back to her, since none of her gifts of any size come unattached. I remember when she "bought" me a car one year when I didn't have one and the kids were young. She was all excited and bragging about it, and then she informed me what the payments were going to be. I don't see that as a gift. She obviously did. Oh well, live and learn...

Son's electric got shut off this week. I'm not in a place where I can help, and, besides, I decided I wasn't going to do that any more. He and his wife are 24 and it's time they learned to pay bills first and spend later instead of the other way around. Her dad lives across the street so they can use his shower and stuff. They still have water, they live in Florida, and they have a fireplace. It could be much worse.

I may end up writing exclusively in here soon. I can't afford the OD+ subscription price and I hate the pop-ups. I have one more month there. I want to download my diary though so I don't lose any of my entries.

My head is starting to hurt(more) again. I've gotten to the point where I don't take meds unless I can't stand it. It's either that or I take them every day.

I'm gonna go lay down.

Tuesday, January 03, 2006


So, do I buy food, or do I get medicine? I have two empty pill bottles here that need to be refilled, but we need meat and things to eat for the week.

I hate being broke.

Until the headaches kicked in like this, we were doing well. We had money in the bank, could afford to do what we needed, and had funds to help out the kids when they were in need. It's getting tighter and tighter the longer I go without working, and who knows when I'll hear anything about my disability application. I'm already looking for a lawyer in case they turn me down. We need the money it would bring in.

I haven't told hubby I'm not taking my meds. He'd get upset. One of them I can really do without at least till spring, but I do need to refill my potassium this week after he gets paid.

I wish I could sell some of my quilted stuff but I tried ebay and the people there don't want to pay for handcrafted things. They want cheap stuff. I can't say I blame them. I look on ebay for cheap things, too.

Hubby went back to work this morning. I was more than ready to see him go. After two 4-day weekends he was driving me bonkers. I love him to death, but he can really get on my nerves.

I think I'll start out the day with a nap. I'm tired after finishing those two crib quilts yesterday.