Tuesday, July 28, 2009

Off to Cleveland AGAIN

Cleveland Rocks

Flying out tomorrow to Cleveland. I have to drive four hours to the airport and get there by , so nothing sedating or for pain tonight. Not looking forward to the drive, not looking forward to the flight, or the overnight stay, or the appointment.

I tried to weasel out of it but the study sponsor wants me to come there. I am spending an awful lot of time and money traveling. I will not be pleased if this turns out to be another nothing like the stitch removal was. If it is not absolutely necessary for me to be there, I don't want to be there. Travel is not easy for me these days.

I may or may not venture another ride on public transit. I am economizing on the hotel since I don't have to be at the Clinic until noon on Thursday. Maybe I can splurge on a taxi. I will decide when I get there. If The Headache is behaving itself, I will probably do the public transit route, if it is not I don't think I will be able to handle it.

Maybe they will reprogram my stimulator and get my brain back on track to wellness. I will think positively and try to be happy to make this trip one more time. I'm going to have to channel my inner MiMi. I wonder if I find some blue eye makeup to wear???

Infested by Meerkats

Their Burrows Run Deep

I envision I am invaded by meerkats, incessantly digging their burrows through the left side of my brain. At night they crowd into their hidey holes and wake up at three AM to go to the bathroom, which is why The Headache chooses that time to wake up too. (I am just guessing that meerkats have small bladders.) The reason The Headache pain get worse in leaps and bounds during the day is because the meerkats get alarmed very easily and hop back in their burrows and are pesky and get in meerkat fights. I see the occipital stimulator as an electric fence for the meerkats, keeping them in their proper space and stopping them from digging more holes!

Can you tell it's been one of those days, one of those nights, where I can't think, I can't do, I can't go to sleep, and I don't want to be awake. Getting goofy here, but maybe having a meerkat haven for a head is a good way to visualize The Headache. Maybe I can invent a jackal to stick its head in the holes and and have it scare the meerkats away to someone else's head. That's how my doggie Augie scares the moles out of my yard!

Cutting back on my work hours this week until after I go to the Cleveland yet once more this month. I may try and increase my hours next week to 40 again. I just did 4 1/2 hours of work today, and got some productive time in, and fixed an old problem for a client. I may have to extend my short term disability one more month if The Headache doesn't behave itself. The Headache is somewhat better today but that has me dreading Thursday when I will be traveling back from Cleveland because the pain will probably be building up by then.

Cleveland is an OK place, but I'm getting tired of traveling there. I will have been there three times in the last thirty days. Hope the next time is a couple of months into the future so I have a little time to catch up financially.

Sunday, July 26, 2009

Peaceful Sunday

Another Pleasant Walk

Took some photo's during my Sunday walk. However, I am pretty well medicated today - taking no chances that Monday will be like Friday and Saturday - so I didn't walk very far or long. I'm a bit like a weeble that wobbles and won't fall down when I really crank up the meds.

I helped a little with the remainder of the canning today, but not much. I'm pretty worthless for anything today.

My mind isn't working too well either. Trying to remember the name of the hibiscus plants I have around my back porch I came up with hippopotamus plants - nope. Marsupial plants...nope again. Manicotti, hyperbole, missionary, humongous were all tried and discarded. I eventually had to give up and phone a friend, just like on Who Wants to Be A Millionaire. When my brain is on overload sometimes words just slip off its rounded exterior like water off a teflon skillet.

Here are some pictures I cobbled up today:

My Dog Augie

My Brother's Dog Beans

Hibiscus Bloom

My back porch where I plan to go and sip a cup of white tea in a minute..

My Head is Throbbing

The Drum Beat of Pain

Read on the internet that swearing distracts you from pain. Perhaps I need to swear lots more. I don't know a great variety of swear words, so I would either have to swear in very short spurts or use the Fred Flinstone "RigginRackinbickinRackerbok" style. I don't know if either of these would be very effective, I think it has to be genuinely spontaneous to help. Maybe I should practice in front of a mirror, like before giving a big speech. My head feels like a ripe watermelon that has been thumped one too many times.

It's four AM and I've not been to sleep yet. Felt better Saturday morning, so went to the Farmer's Market and bought a bushel of green beans to can. We snapped beans for about three hours, and so far have canned 21 quarts, with possibly another 21 quarts to go tomorrow! My mom, the canning expert, helped me with these. In fact she's the mastermind of canning strategy, marshalling supplies, and arranging canning equipment around for proper usage. I'm glad she is here to help!

I also went grocery shopping, and stopped by my sister's house for a short chat. I'm afraid that my head was not in good shape by the time I went grocery shopping, and it definitely has gotten worse. I've medicated and remedicated this evening, and right now have completely turned off the stimulator on the chance perhaps it's interfering someway. The Headache seems to be a bit worse with it off, but is it just my imagination? I will turn it back on before I try to sleep again.

Friday, July 24, 2009

Bad Headache Day #34 2009

Goal Not Met :(

I was able to work 38.5 hours this week, 1.5 hours short of my goal. I am really feeling sad about it, yet I should be happy because this is the longest work week I've been able to work in a long long time. I only was able to work 2.5 hours today before calling it quits and heading home.

The Headache started on its rampage yesterday afternoon, and just kept building last night. I woke up this morning in pain, but sucked it up and went to work anyway. I probably shouldn't have bothered, because my brain was on fire and I wasn't able to do very much. When I found myself in my dark office not able to think of anything but my brain being stabbed with icepicks, I decided to head home and medicate before I had to head out to an ER because I waited too long. I have slept most of the afternoon, early evening, off and on. The Headache is not good, but I think the occipital stimulator has helped keep me from experiencing it at its worst. Normally when the pain starts building like this, and the stabbing pain starts it just jumps into the stratosphere of pain. This time it hasn't although the pain is bad enough. Is it wishful thinking or is the stimulator really helping?

My disappointment is that I want to be "normal" again. I don't think that is going to happen anytime soon. The Headache is still working it's hoodoo on my brain with every three to four days being pretty bad. I would say at this point I feel my pain is reduced to a functional level on my good days, and while still non-functional on my bad days so far it has not escalated to that pain plateau where I simply melt down to a puddle of pain and tears.

My left eye is swollen and my left sinuses are icky/runny, I'm extremely light sensitive tonight, and nauseous. All part of the constant continuum that is Hemicrania Continua! The pain is at a high level, and the medication doesn't seem to be making much impact - but on the good side, it's not getting worse at this point!

Hoping for a better day tomorrow, and that all have a great weekend. I think I may have to rethink my strategy about work - perhaps I am too quick to try to go back to full time? Will I ever be able to go back to full time again? Bummerific.

Thursday, July 23, 2009

So Far So Good

Another Day in Headache Land

I think The Headache is trying to foil my plans this week. Despite changes to stimulator settings, and much ice on the noggin (I even took my ice bag with me to work today) I would just call today a semi success. Yes, I managed to work 8 hours today, but just barely. By the end of the day I turned off the lights in my office and was having a hard time concentrating on anything.

We had a meeting on some QA testing I had been doing, and that went well - at least I think I was coherent! The kids that have been working on the new product have been doing a fantastic job. A definite drawback is that healthcare is a funny industry, and there is no where you can really get the business background other than working in healthcare, so they had a few misses but mostly they were hitting the balls out of the ballpark. Their product looks great, is fast, and just a tad bit too mouse driven for me, but probably great for the majority of users. I got some keyboard tips from them so I can try the screens with keyboard shortcuts to see if I can get faster yet.

Called Anthem about the non-network payment. At first the rep suggested I get Cleveland Clinic to resubmit the bill. I suggested they check their own paperwork, since all other claims paid as in network. The rep then tried to say they used the wrong NPI number. I suggested again that someone at their location had processed the claim incorrectly. The rep then said hang onto the check, we will want our money back, I'll give this to an adjuster. The last time I had that happen was not good. Nobody, and I mean NOBODY at Anthem did what they were supposed to do until I raised the roof. I realize they are constantly reorganizing and revamping things, but hopefully not at the expense of doing daily business accurately and completely. I've worked in the industry so I have some notion of what goes round and round on their carousel of claims. I don't know how consumers ever know that something was done incorrectly when you have to fight to get an answer for anything.

I'm pretty tired this evening. Haven't taken any medication yet, as The Belly decided to start throwing a fit today because I fed it some fast food. I know better, but The Headache was making me feel pretty lousy and I didn't feel like packing a lunch. That's what I get for being lazy! I have jumpy legs this evening which tells me I'm probably in more pain even than I realize.

Tomorrow is Friday, and if I can get eight hours of work in it I will have more than met my goal for the week. Going to put my brain to rest, and medicate The Headache and The Belly. No more fast food for a while! I have set a second goal for myself: canning some green tomato pickles this weekend. I hope I have the brain power!

Wednesday, July 22, 2009

My Head Hurts

Too Much Too Soon?

Went to work, did another nine hour day. However, today started out badly with The Headache in its usual every three to four day flare up. I fiddled with my stimulator settings hoping to forestall The Headache for as long as possible.

The Headache was having none of it, and kept creeping along insidiously increasing pain bit by bit. By late afternoon I knew that despite my stimulator's help (or no help??) The Headache was interfering not only with my well being but with my thought processes. I should have just hung up my hat at noon and gone home, although I did solve a few problems and finally found my comma that was causing the program I was recoding to err. Normally that was a few minutes process but today it took a few hours.

I'm trying an ice pack tonight. Sometimes ice helps, sometimes heat helps, sometimes nothing helps. I've also taken some benedryl (I don't think the vistaril is making the grade), phenergan, and in desperation a trammadol tablet - hoping to at least put myself to sleep. Unfortunately its been an hour and my head is cold but still hurts and I'm not feeling sleepy at all.

Maybe part of my problem is I came home and there was an envelope from Anthem Blue Cross and Blue Shield. I could tell there was a check in it. Normally, checks in the mail are a woo hoo moment, but not when you're messing with Inaccurate Anthem. They paid their share of my surgery at Cleveland Clinic as out of network. Every bill from Cleveland has paid in-network until this one. Cleveland had even gotten Anthem's share pre-certed. According to the EOB, I could be responsible for another $900 because they paid it out of network. Tomorrow I will try to get this straightened out. The last time they screwed up like this it took over nine months, and me literally staying on the phone for four hours until I forced a supervisor to speak to me. The poor customer service rep was stuck making small talk until her boss would deign to speak to me. I had two approved appeals that for whatever reason had never been processed, and was being taken to court because they had not paid what the appeal said they would. I should have never had to appeal, they processed the claims incorrectly according to some made up fee schedule. What a mess! They definitely are too big for their britches as my dad would say.

Tuesday, July 21, 2009

Goals I Haz Dem 2

Fantastic Week Up to Now

Not only have I met my work goals so far, I have exceeded them! I was able to put in a 10 hour day yesterday and a 9 hour day today. Not up to my preheadache standards, but an improvement over the last six months. I don't know if I will do 10 hours straight again this week. Last night The Headache let me know it was displeased with me, and I had to medicate early on - ruining my weekly Antiques Roadshow watching experience. The only television show I look forward to watching and I was too medicated to concentrate.

We are such dedicated Antiques Roadshow watchers at my house that we watch shows that we have seen three or four times just as if they were brand new. I'm not sure what our fascination is with this show. The entire family watches it - no matter where we live it is on our schedules. Everything stops when the Antiques Roadshow is on! My little dachshund even knows the theme music for it, and will get out certain squeaky toys when it is on that he uses only for Antiques Roadshow time. I think he does it because it is hard to get my attention when I am enthralled by the parade of unusual possessions and appraisals.

I am feeling better than I have in months and months and months, even having to medicate quite a bit last night was better than having to medicate like that all the time. Could it be the occipital stimulator implant? Well, it is three weeks post surgery and I have improved my activity levels a lot in the last three weeks. Since it is a blind study I will leave you to speculate - is my stimulator actually working, or am I suffering from a placebo effect?

I definitely am still experiencing pain, and in the same pattern with still some extreme pain levels. Medication wise I have decreased amounts about 50%, activity wise I have increased about 35%. That's really the first improvement I have had on both fronts since The Headache started in 2007.

Hoping to reach the rest of my goals this week, and keep The Headache at bay. WooHoo!!! I'm back in the saddle again! Yippee Ti Yi Yo!!!

Sunday, July 19, 2009

Another Quiet Lovely Sunday

Making Goals For Next Week

Went to the farmer's market this weekend, got some corn and green beans and what we call cobblestone potatoes (the tiny potatoes that you find when you dig up potatoes for harvest). My brother took my Mom tomato shopping, and they got busy canning tomatoes, something I didn't have to get involved with this year. Mom did pretty great teaching my brother how to can tomatoes and make tomato juice. She's still pretty spry for 78 years old!

Cooked my green beans with bacon, new potatoes, and onion. That will be a meal or two for me. I can't eat the bacon, but the flavor will be in the beans. Home made goodness! Yeah!

I'm feeling ambitious enought to start setting some goals. My plan for next week is to work 5 eight hour days in a row. I will not have done that since November 2007, but I think I might be able to! Have I mentioned I have the greatest bosses in the world?? The Headache is talking to me this evening, but I think I have it under control.

Went on another Sunday walk - a longer one this time. I took pictures of the native wildflowers (or weeds if you prefer) I found on my walk. Thanks to the Missouri Wildflower website for helping me identify the correct names for the ones I didn't already know!


Queen Anne's Lace

Daisy Fleabane

Red Clover


Hairy Wild Petunia

Saturday, July 18, 2009

I'm Effervescent

Light as a Feather, Floating Away

I'm bubbly feeling tonight. Light, relaxed, rising like carbonation to the top of the glass, floating on cubes of ice. I feel ready to fly away into the cool night air. Best day I've had in many moons.

The Headache is still there, but tonight it's behaving itself. I'm tired, but in a good mood, feeling optimistic, ready to roll again, shaking off disappointment and grumpiness. Dissapating the negativity - shredding it and discarding it.

Not sure what tomorrow may bring, but as Scarlett O'Hara said in Gone With the Wind - tomorrow is another day!

Friday, July 17, 2009

Seeing Dr. Dunce

Once More into The Fray

Had an appointment today back with my gynecologist about the pelvic pain. The gynecological oncologist, who in all his wisdom told me I absolutely could not have the problems I am having from the radiation therapy, wimped out when it came to actually telling me that yes, your problems are due to radiation therapy and referred me back to my gynecologist. This has been a four month journey in frustration that still has no resolution.

Dr. Dunce #1 sent me to Dr. Dunce #2 because Dr. Dunce #3 gave me too much radiation. Dr. Dunce #2, after stating that I could not be having problems from radiation because he Dr. Dunce #2 would never ever prescribe radiation therapy if it gave you so much touble, ordered lots of tests and then sent me to nice colorectal surgeon and nice urologist. They ordered lots of tests, and then told me my problems are due to late effects of radiation therapy. Dr. Dunce #2, who never ever told me the results of the tests he ordered (probably because the result was that I had problems from radiation therapy) referred me back to Dr. Dunce #1.

Dr. Dunce #1 says I'm a gynecologist, I don't know what to do for radiation damage. I said that Dr. Dunce #2 sent me back to you. He said "why would he do that?" I said "My question exactly, I don't have any pieces or parts that pertain to you any more." He says, Dr. Dunce #2 has experience treating these types of radiation treatment problems not me. I say "Dr. Dunce #2 doesn't want to admit that it is radiation damage, but everyone else says it is - so what do I do now? I have pelvic pain, weakness, inability to stand for long periods or walk for long periods, I have urinary and fecal incontinence. I am having to take medication daily for the pain. Who do I go see?" Dr. Dunce #1 says "See the local pain management folks" I say "They say they can't treat it unless they can inject it. There's nothing to inject" Dr. Dunce #1 says, "Maybe a spinal cord stimulator would work" I say nice urologist and nice colorectal surgeon both said radiation damage doesn't do well with stimulators because you already have leaky wiring...and I already have one in my HEAD." Dr. Dunce #1 then says "I guess you need to go to a tertiary center like Wash U in St. Louis to see what they can do. Call over there and see what they say. Maybe they are doing a study or something. These types of problems are progressive, and don't get better". No duh. Dr. Dunce #1 didn't offer a referral or department to call or anything.

No one mentions Dr. Dunce #3, who overdosed me with radiation. I guess its up to me to find my solution, just like I had to find someone somewhere who installed occipital stimulators. I'm calling Dr. Dunce #3, who I have an appoinment with in August, to see what they recommend. I expect I will be told once more, radiation therapy can't be causing these problems. Sheesh! I feel like I'm in that Abbott and Costello routine about baseball, always ending back where I began.

Who's on first? I don't know! Third Base!

On the good side, The Headache is much much better today. Hoping for a productive weekend. I have plans to go to the local tomato broker and buy some canning tomatos to supplement our crop. Then I will have fun processing and canning them!

Thursday, July 16, 2009


Crank Up the Amps

The Headache is having fun this week. Third bad day in a row, but at least I was able to work five hours. A mini triumph. If I could peck on the stimulator and give it a good shake I would. Is it working or is it not??? Maybe I will just turn up the controller and see what breaks first - me or The Headache.

My temper is simmering on high as is my blood pressure. I think if I did not have the electrical gadget in my head I might have ended up in the ER. I may yet. Grumpy is me, me am Grumpy. Nauseous is me, me am nauseous. Ouchy is me, me am ouchy. What games The Headache plays with my mind and my belly and my brain. I'm tired of playing, so I will take some meds and go to sleep again. I will try try try again tomorrow.

I work in the IT industry and work at sites all over the US remotely, and they decided a few weeks ago at work to start changing internal IP addresses for different VPN's one site at a time. They didn't come up with an elegant network solution for this, so all day long I was going into network properties and changing my IP address to the correct network IP for the VPN. The very first sites they chose are the newest site just now getting built, and one of our sites that requires the most work. I needed a scorecard because by the end of the day I don't which one I ended up in. Maybe that's why I'm Grumpy!

I did tell the big guy (my boss) that changing the IP is just not cutting it. There are ways around it, our network guys are brilliant - just too busy to fix it right. I think they need to juggle this all day without the tools they use, just like the rest of us. See I really am Grumpy! I generally am not gripey about work.

Wednesday, July 15, 2009

Headache Blog Carnival Open for Business

July Headache Blog at SomeBody Heal Me

Please check out this months entries. Some very interesting reading on migraine and headache disorders and living with these problems!

Bad Headache Day #33 2009

The Toll For Travel

I wish the toll I have to pay for travel was only 15 cents. Bad night last night, but I knew it was coming as early as yesterday morning. Good news - I was able to keep going despite everything until almost 8 PM. The visteral helped, but it took 3 doses to fix me up. No emergency room visit, but I did get to the "Oh God, oh God, oh God" rolling around in pain level which is never pleasant. I had an ice pack which did help a little also. The stimulator maybe helped keep this at bay for so many hours. Like everything else, not much help as The Headache got really romping. Maybe when I get real programming it will work better.

I'm having quite a bit of right shoulder and arm pain lately and I'm thinking it may be the result of my new wiring. Not sure if I'm holding my head at odd angles or if some of my pokey holes hit a nerve somewhere. Put that on top of the head pain and by midnight last night I was tempted to cut my arm off with a chainsaw - except I'm right handed. Dang! I thought about knawing it off but that was too much effort for my overstretched brain. The Headache is better this morning, and so is the arm pain. Maybe it is just a new ploy The Headache is trying just to annoy me.

Going to work in a few minutes. Wouldn't be doing this if they weren't woefully short handed this week. My brain is bruised mush this morning. I think I will be taking an ice pack with me.

Tuesday, July 14, 2009

KU Medical Center Day

I'm On the March to Painville

I drove to Kansas City today to see my headache specialist. Have had the appointment for a few months. Also squeezed in a visit to the Immunology department to discuss my horrid hives.

My specialist was pleased with my progress to partially functional, since I was coming from totally disfunctional territory the last time she saw me.

I told her that the Benedryl is having less and less effect, and she said that is a draw back for Benedryl. She prescribed Vistaril, another sedating antihistamine medication to take in combination with phenergan. She said the trammadol I was taking probably wasn't doing much good for the type headache I have, and I said it didn't do much, but was in assistance in sedating me when the headache got bad enough. She said the Vistaril should do the trick, even though it is a low dose. She also mentioned if the oral route of a medication doesn't help with a headache, sometimes it helps to bypass the digestive system, either as a suppository or as a specially compounded skin absorbing cream. She said there just isn't much that can be done for The Headache other than what we are already doing. She said she would like to see how The Headache does after the three month study period, when all the bells, whistles, and programming gets turned on the occipital stimulator. Me too!

The immunologist took pity on my hivey body and loaded me up with samples of some expensive medications. She also said I need to carry TWO Epipens with me. I keep one in the car at all times, but never thought of carrying two in my purse. More blood tests, meaning more co-pay. Sigh. At least I got the free samples!!! I was glad to get reestablished with someone who is used to treating chronic hives. The only allergist I found locally after my immunologist passed away last fall said he didn't treat chronic hives.

I left at 4:30 this morning in order to get to KC in time for my first appointment. I drove through dreadful rain and lightening half the way there, and then bumper to bumper traffic after I hit the Kansas City limits. I had forgotten what real rush hour traffic is like! The Headache did not behave itself, even after I fiddled with my stimulator controls.

Tonight I will be trying the Vistaril to see how it goes, but am waiting until the last minute because I am determined to get some things done. I won't be able to save myself from hurting, since the march to painville has already started and is well on its way, so I'm going to suck it up and see how long I can last. I was able to work for about an hour after I got home, so at least I am drawing some wages for today. Hoorah!

Monday, July 13, 2009

Forged to Change

Reacting to Life's Misfortunes

I visualize my psyche as an anvil, my body as metal being forged, and my disease as the hammer and the heat that bends the metal against the anvil. The higher the heat, the heavier the hammer blow - the metal changes, crystallizes, metamorphosizes and the anvil absorbs the shock.

You start to wonder after too many hits of pain what limits there are on body adaptation and how much transference has occurred to your mind and mood, reflecting the physical changes. After being this way too long, has the pain burned its way into my neural pathways gaining a strangle hold on my perception of wellbeing?

Wanting to be my old normal self again, but I wait for the hammer to fall once more. And when it does, I will wait again.

Sunday, July 12, 2009

Lovely Sunday Walk

Hot & Humid, but Wally likes it

Typical Missouri summer day, hot and humid. The birds are chirping and the insects buzzing and the neighbors are yelling at Wally, our other neighbor's dog. Wally likes to go and pee on everyone's plants. We are into the zen of Wally and let him roam through but the other neighbors are not as kind. Wally is an upbeat little fluffy white dog - we're really not sure what kind of dog he is, except that he obviously drinks a lot of water so must be part camel.

We're all slow and sleeping today, except for Wally. I was able to go for a walk in the hot humid weather and suffer no ill effects. I'm trying a little bit more each day. The Headache is still there, lurking, waiting and watching for an opportunity for make my day hell, but I'm hoping the short circuit stimulator will do the job and smack it back into place.

Adding some pictures from my walk. Took some pictures of the plants. It's been a wonderful quiet day with the exception of Wally.

Blackeyed Susan

Butterfly Bush

Day Lilly

Old Fashioned Trumpet Vine

Planters of Coleus

Jalepenos from the garden

Eggplant Blooming

Tomatoes starting to ripen

The Side Yard

A Road Less Traveled

Saturday, July 11, 2009

Good Day All Around

Feeling Active

For the first time in a year and a half, I was able to go grocery shopping, come home and directly unload my car and put up the groceries myself! This was after sweeping and mopping the sunroom and kitchen floors this morning. To most of you this might seem to be nothing - you do this all the time! It has been impossible for me due to The Headache to do this much activity on the same day and not end up in unbearable agony. I admit I did take a nap this afternoon, but that is because The Headache kept me up all night.

The remembrance of past pain and fear of recurrance rather than current pain was part of my problem last night. I did have to medicate, and the medication didn't really kick in until the second dose around 4 AM. I cranked up the stimulator program and hoped for the best. Maybe I didn't get the best but I certainly didn't have my fears realized either. Is the stimulator doing what it is designed to do? I wish I wish I hope. Maybe I can click my ruby slippers together a few times and my wish will come true.

Feeling pretty good today. The Headache is still here, but it is much lighter than it has been. Hoping this isn't a fluke, but a taste of things to come. Sad part for me is that I can't swim this summer, at least until everything is completely healed - which will probably be September. I couldn't swim last year - The Headache wouldn't let me. Looking forward to next summer if my electric head works well enough. Ready to get back to normal activity like my old self.

Anti-Sec BullHockey

Blogger Appmaker Hacked

Kept getting an image overriding my blog tonight. Watched stuff load, figured out it was an app, and removed it - then found this on the web:

Well, should'a checked the web sooner, but it was an interesting problem for a few minutes. You would think that people with enough talent to go hacking aboot would find something a little more useful or more flashy to do with their time. Their anti-sec message was wasted on me although it gave me a little distraction from The Headache, which is persisting tonight, although not as bad as it has been in the past. I still seem to be following the same 3-4 day pattern of pain exacerbation.

Not sure how the hacker babies wrote their code, but on my blog the top 1/3 of their image was chopped off. Maybe they should've tested it a bit more?? Doesn't anyone take pride in their work anymore??

Friday, July 10, 2009

Packed in Like Sardines

Too Much Mass Transport in One Day

Went to Cleveland and back yesterday just to get my stitches out. Supposedly I was also to meet with the ANS representative (the occipital stimulator study sponsor) but she was participating in an operation and said if I didn't have any questions it wasn't necessary. I knew it was going to be a big waste of time and money. I could have snipped the stitches myself for free! I guess they have to do it in case you get an infection or something. Wound care for idiots I guess. I grew up on a farm where you better know how to stitch yourself up because you were an hour away from any help.

Stayed overnight in St. Louis. Had a hard time finding a room - apparently either it's the all star game crowd starting early or it was convention week. Ended up on a murphy bed in a conference room for big $$. Sigh.

Got up at 4 am for a packed flight to Chicago, and then Cleveland. Took public transport in Cleveland - worked great the last time I was there - for $4.50 you can ride trains/buses all day and there's a route from the airport right to the Clevland Clinic. I get on the train at the airport, and apparently there was some "happening" for young grunge/punk/goth kids with no money and people just started pouring onto the train at every stop. They crammed in until you couldn't cram anyone else in. They were sooo noisy I missed my stop to catch the bus and I had to ride 20 blocks out of the way. Then the buses wouldn't stop - probably had the same problem with overcrowding, so I hiked my butt 20 blocks to the clinic. Couldn't have done that two weeks ago without ending up in an ER later!

I get my stitches out, ride back to the airport (at least the ride back wasn't bad - probably wouldn't want to be on the 1:00 AM ride that night!) then get on the planes back to Chicago and St. Louis - which were booked to the max, and I had two big boozy boys decide to crowd in the row I sat. By this time The Headache was awake despite the electricity, and I had two and a half hours of forced space sharing with bad old booze three day bender smells. I then had a four hour drive home. A looooooong day around way way way toooooo many people. The Headache didn't like it a bit, but it was controllable pain. I was able to medicate when I got home around midnight and go to sleep.

I didn't work much today but I did go in for an hour or two and was productive. The Headache is still pounding even tho I have tried some different settings on the occipital stimulator control. I'm going to knock out pretty soon and see what tomorrow brings.

Something was going on at the airports security wise. Last week when I went you could put your shoes in one of the plastic boxes and send them through the xray machine. This week you had to put them directly on the conveyor. Last week I had a neck brace on but they didn't check it for explosives or my hands for explosives when I was "patted down". These week they did. Also there were security TSA personnel doing random patdowns and searches of persons standing in lines for certain flights. First time I have seen that.

I'm tired of being a sardine. I looked at the private Leerjets at the airport waiting for someone to fly away in them, and wished I was one of the privileged few instead of one of the sweaty millions. Oh well.....sigh.

Tuesday, July 7, 2009

Productive Day

Working my way Back to Eight Hours

A good day at work, got several goals accomplished. Almost feel like my old self again. Didn't work eight hours, but worked more than yesterday. I want to be up to eight hours daily by the end of this month.

The incisions are healing and itching from the occipital stimulator surgery. The hives are still there from the allergic reaction and itching. I wasn't supposed to change the dressings but I did anyway - I couldn't stand the old icky things hanging on me. I wasn't supposed to wash my hair but I figured a way to do it - thank God for Glad Press'n Seal Wrap! I wrapped my neck dressing with Press'n Seal and then very carefully washed my hair. I was glad the Glad Wrap did the job!

I feel like a bear - I need a tree that I can put my back against and itch. I find myself looking at things like corners of doors, and thinking I could itch my back on that! Hoping much of the itchiness will be gone when the stitches are out. And yes, they are stitches, not staples. Nicely and neatly tied stitches!

Can't wait to take a shower. I feel grungy. Ready for the stitches to be OUT. Grrrrrrrrrrr.

Monday, July 6, 2009

I have a Power-Head

Can I get a Red Flashing Fresnel Top Too?

Work day today. Didn't last an entire day, but got a lot accomplished. I feel energized - can't tell if its my energizer bunny battery unit or just starting to get over the operation.

Had an appointment this AM with my colorectal specialist. Some great surprise news NOT! Same list I have gone over with other specialists. Nerve damage - check, anal sphincter non functional from radiation fibrosis - check, reduced muscle control from fibrosis and nerve damage - check, overall - no way to fix anything - check. He suggested to preserve what little nerve functionality I have to take biofeedback classes specifically for my pudendal nerve functions. This would be a several week committment from one to two times per week to once every two weeks. I will have to think on this - I am not sure if there is a benefit to it and it means having some type of sensor in sensitive areas..reminds me of the South Park episode when Cartman got an anal probe . I don't want to be used as bait for the visitors...or be under alien control. :)