Monday, November 29, 2010


Long Day

Over Thanksgiving my Mom, who is 80, had a dizzy spell.  We thought maybe she had just gotten too interested in everybody and everything and not eaten correctly.  Friday she had a brief spell at 5 AM, on Saturday she was better, on Sunday she had another brief episode, and this morning she was again unable to talk and very nauseated due to the dizziness.  She caught me just as I was ready to go out the door to commute to work.

I remembered to take her blood sugar in order to make sure she was not having low blood sugar.  Nope, normal.  She didn't feel better after drinking some coffee and eating something.  I gave her a choice - urgent care, emergency room, or doctor visit.  She chose emergency room, and the one closest to us.

Once there we waited and waited and waited.  There had been some ice or heavy frost that morning, and there were 4 different people there with falls.  Mom's blood pressure was pretty elevated, and she was still dizzy by the time the triage nurse got to talk to her.

The end result of the visit is that #1) Mom is having an inner ear disturbance/infection.  or #2) Mom has had a slight stroke in the vestibular area of the brain.  The doc gave a script for anti-vert in case #1 was true.  He suggested watchful waiting to make sure that #2 was not true.  He said the only treatment for that type of stroke would be blood thinners, and Mom is already on those.  If she does not improve in a couple of days we are to go to her regular doc.

I'm hiving pretty big time this evening and ready to go to sleep.  Not sure what to do about work.  I feel I need to wait until Mom wakes up and see how she is doing before I make any decisions tomorrow.  Hoping the antivert will make her less dizzy, but not confident that it will.

Autonomic Nervous System

Sympathy for my Not so Sympathetic Nerves

I haven't felt well this weekend, as often happens when I don't feel well I research.  Not sure what I think this accomplishes but inwardly it often gives me a feeling that I am still moving forward no matter how stalled out I am in real life.  I am always happy if I think I have discovered something that explains a symptom I didn't really understand before.  Again - this can be just my imagination working overtime, but at least I'm not sitting here stuck in the "I'm in pain" loop.

If you have never experienced the "I'm in pain" loop my brain thinks like this:
"I'm in pain"  (sad and wimpy)
"Ignore that!" (snappy and aggravated)
"My mind seems stuck in a loop!!??" (amazement at my genius)
"Duhhhh......" (drool from slack brain)
"Was I supposed to ignore something?" (looking for a brain cell to light up)
"I'm in pain" (see above)
"Ignore that!" (see above) infinitum [you get the picture]
It's like trying to bat a mosquito dive bombing your ear.  You wave at it and smack at it and its annoying as all get out but you just can't get rid of the little monster.  When I get stuck like this it becomes impossible to reboot my brain, so keeping it occupied (I have discovered and WooHoo!) keeps it moving forward.

My choice of research this weekend was my nervous system.  Dr. Welby thought it was very interesting that my GI specialist at Barnes/Wash U in St. Louis (Dr. Bellyfixer) was certain that my motility and other digestive issues were from nerve damage that controls the bowels.  In researching the innervation of this region of my body I found that is controlled by the autonomic nervous system, and the part that controls the bowels comes from the lumbosacral region of the spine - the part that the radiation treatment seems to have harmed.

The autonomic nervous system is made up of two to three different systems (there seems to be some disagreement about the third - whether it is a separate element or not).  The sympathetic nervous system governs intestinal peristalsis and some bladder functions.  The parasympathetic nervous system controls the sphincters, incontinence issues and non-specific abdominal pain that may be felt in the skin. The enteric nervous system works with gut motility and some reflexive digestive processes.

These systems work with each to complete the digestive process and to signal the body when things are right and when things are wrong with digestion and organs in the pelvic area.  If one gets out of synch they are all in danger of malfunctioning.  It is sort of a "push me pull me" type of relationship so if two sides decide to push instead of one push and one pull you get all sorts of problems happening. Sorta like The Belly and me!

The major nerve signalling chemical used by the autonomic systems is acetycholine.  One of the drugs which works the best for my motility problems is an older drug, Pamine (methscoplamine bromide) prescribed by Dr. Bellyfixer. One of the Dr. Dunces sneered at me in a condescending manner when I told him that this was really the only medication that had helped me so far.  I guess Dr. Bellyfixer (a department head working at one of the top ranked hospitals in the country) knew his chemistry and neural signallers better than all the local Dr. Dunces put together.  Pamine is an anticholinergic, a medication specifically formulated to inhibit acetycholine in the nervous system so I guess it stops some of the over signalling that is going on in my bowels!  Now I know why it works, and why it was prescribed. 

The autonomic system is considered part of the peripheral nervous system which is basically any nerve in your body that doesn't come directly from the brain or spine.  The other part of the peripheral nervous system is the somatic nervous system, which deals with touch, pain and movement.  The somatic part doesn't work very well for me either, but I think that type of damage is easier to diagnose due to weakness and changes in sensation and pain.

Enough nervous system anatomy for today/tonight.  My pain has decided to calm down for awhile so I'm going to try to go to sleep while I can!  WooHoo!!!  Trying to go without medication so I can jump to work tomorrow early!

Saturday, November 27, 2010

My Cup O' Pain

It Runneth Over

We are all born with an innate ability to withstand pain.  Some of us are born with more "capacity" to withstand pain than others.  Chronic pain effects us differently than acute pain.

The question I ask myself, what "switches" me over from having pain I can tolerate and work with and deal with to having pain that makes me shake, get "shockey", unable to think?   It literally can feel like one minute I am dealing with pain just fine and the next I am past my limit.  I don't know how to plan for this, how to prevent it, or when in the midst of it I sometimes can't even think of anything but the pain.

I have decided that I have a cup, like a teacup, that holds my pain. 

If everything is going fine, I don't overdo anything, The Headache behaves, The Legs are OK, The Belly rumbles onward, I am able to sleep and rest, the pain drips into the teacup but then gets emptied every day, and I start off the next day with an empty cup ready to fill it up again.

If something happens, and I have acute pain (like The Headache) instead of dripping pain into my cup, it POURS into the cup in great gushes.  If I medicate, or get my stimulator set just right, or am able to sleep (or maybe combinations of all three) the gushing stops and the teacup holds at that level, and if I'm lucky empties.   If I can't stop the gushing, the teacup overflows and I am at the point I can't walk, talk, or think from pain.  If the teacup just holds and doesn't empty, I am still at risk of overflowing it, since now I am working with a cup that is half full, three quarters full, or to the brim instead of the nice empty cup.

If the cup doesn't get emptied, and the pain just drips onward with my normal levels of pain (instead of gushing full with acute pain) I come to a tipping point.  One more drop, and it is overfull.  Being overfull, my body doesn't seem to care if the extra drop of pain is from a too tight blood pressure cuff, a needle stick trying to start an IV, or an extra bright light boring into my brain - it just starts the same shaking, not able to think, freezing cold reaction it does when I have great gushing extreme levels of pain.  The only difference seems to be that I am not as agitated as I am when the pain comes too quickly and overflows my cup too fast.  Perhaps my body and mind has had more time to adjust?  Or the physical shock is not as great? Just not sure.

My PCP tells me that allowing my pain to stay uncontrolled puts me at risk for "overflowing my cup o' pain".  Not enough sleep puts me at risk.  Doing too much without controlling the pain puts me at risk.  He gives me plenty of medication so I CAN control my pain. He worries that I WON'T control my pain.

Here is my dilemma:  I am not afraid of addiction, but I fear not being able to "function" on the pain medication.  I am sleepy.  I don't think right.  I have poor impulse control. I have poor balance.  My nausea gets worse.  I won't drive because of these side effects.  I find it difficult to be productive because of these side effects.  I like being productive.  What to do? 

I can't function at all when my cup o' pain overflows, and I can't function well with the pain medication.  Logically I know the answer.  It is the same answer my PCP tells me.  Not functioning at all is not acceptable.  Not functioning well is not optimal, but it is better than not functioning at all.  I probably am not functioning with the pain as well as I imagine, because the "drip drip drip" into the teacup does take a toll.

I hate having to change, having to admit I am not in control, having to deal with this.  I'm a big wuss....and a complainer....and a griper.  Determining this weekend that next year will not be the same as this year.  I will take a hard look at what works, and what gains the most ability verses the least disability, and I will make permanent changes.  I am positive that I will continue to endure and there is either going to be a way to upgrade my teacup o' pain to a bucket, or a way to keep that cup empty more often.

Here are some links to more information on Chronic Pain, Chronic Pain Syndromes, and Pain Management (I hope none of them are wackydoodles - I visited all the websites but didn't research their bonafides):

American Chronic Pain Association
International Association for the Study of Pain
Alliance of State Pain Initiatives
American Fibromyalgia Syndrome Association
American Headache Society
American Pain Foundation
Chronic Pain Association of Canada
The Endometriosis Association
The Facial Pain Association
International Pelvic Pain Association
National Headache Foundation
National Pain Foundation
The Reflex Sympathetic Dystrophy Association

Next year will be better, tomorrow will be better - there is always tomorrow!  (PS I am thinking of capitalizing on the poor impulse control while on pain medication - what kind of whacky behavior can I just have fun doing and THEN blame on the medication?  Hmmmmmmm....)

Thursday, November 25, 2010

Over the River and Through The Woods

Grandma's House is MY House Too!

A great stress free Thanksgiving.  My brother cooked almost all of Thanksgiving by himself.  I assisted with a couple of dishes with my Mom's help, and my sister brought over a lovely Waldorf salad.  I am thankful for my family.  My brother in law was able to stay, eat a wonderful Thanksgiving meal in our sun room, go into the living room and watch a football game with my brothers - the first time he has stayed this long since his stroke 2 years ago.  He had a great time, and we all did too!!  My sister was able to stay long enough to relax, and my Mom had a wonderful afternoon and evening, after a rough start this morning.  We had tornados going through last night, so we were all thankful that the damage passed us by!

Mom is 80 this year and woke up this morning with a scare being too dizzy to stand or walk.  She has had quite a few mini-strokes and has high blood pressure in addition to being a colon cancer survivor and having advanced COPD.   I try to be very cautious with her health, but she can be very stubborn about getting medical help.  I finally convinced her to take a Zofran she had for nausea, and then to eat a little something and her headache and the seasickness went away.  If it hadn't we would have been heading over to an emergency room to make sure she had not had another TIA.

She does not have a good sense of hunger since they removed part of her stomach when she had colon cancer surgery a couple of years ago, so I was not sure what she had eaten the day before.  My brothers were cooking in our kitchen, and I think she got so interested in the cooking she forgot to eat.  I got home late and asked her if she had eaten and she told me yes, but I think she misremembered since eating something this morning made her symptoms go away.  She felt fine the rest of the day, so watchful waiting tomorrow to make sure she still feels OK.  She definitely ate plenty today!!

I will find out the results of my EMG next week.  Dr. Welby was very nice and explained his preliminary findings to me yesterday.  I definitely do not have diabetic neuropathy.  I definitely do not have peripheral neuropathy.  I defnitely do not have a structural issue like spinal stenosis or degenerative disk disease.  I have normal nerve function in my lower nerves.  I have abnormal nerve function in my lumbosacral plexus which feeds the nerve impulses down to my lower nerves.  There seems to be a lot of mis-signaling going on in the plexus, perhaps due to fibrotic changes from pelvic radiation therapy.  He could tell I had abnormal nerve signalling going on as concerns pain location and perception.  He has treated one other person for post radiation lumbosacral plexopathy - a 70 yo man who had radiation for testicular cancer 40 some years ago and just NOW is having problems. 

He understood when I told him my digestive issues were thought to be due to nerve damage in the intestines rather than mucosal damage.  He spoke to me as if I had a functioning brain and not once did he try to pooh pooh my concerns (as the Dr. Dunces did).  He said I did not show myokemic discharges in the plexus nerves which very easily points to radiation nerve damage, but not everyone has that symptom.  He had a difficult time finding a functional nerve to test in my lumbosacral region.  He felt that perhaps I have damage in the cauda equina region also based on the symptoms I gave him.  Sigh...  Well at least they can't tell me AGAIN I have peripheral neuropahty or diabetic neuropathy. These have been finally and absolutely RULED OUT.  I guess I have that to be Thankful For!  Adding it to my list!!!  Just wondering what the final report will say, as I asked specifically what my future will look like.  Sigh again...

Hoping you all have great Thanksgivings and don't wear yourselves out too much.  Praying that you all have pain free holidays!

Tuesday, November 23, 2010

EMG Tomorrow

Dr. Welby At The Helm

I have an Electromyogram (EMG) of my legs scheduled at 10 AM tomorrow and Dr. Dense is NOT the neurologist.  Instead I am getting Marcus Welby, MD,  the kindly reassuring older neurologist everyone in town respects and loves, the one that never takes new patients because his roster is always full.  I wasn't expecting anything until next January or February at the pace they do things at the local neuro clinic.  My PCP must've motivated somebody - I'm totally surprised.  WooHoo!!

I didn't take any pain meds today, and won't tonight or tomorrow.  I am afraid of skewing the EMG results with medication, so I decided to hurt instead.  This certainly has been a week of doctor appointments.

I saw Dr. Calm, the immunologist, today.  He is running tests for mammalian meat allergy and the genetic mutations (c-kit mutations?) for mastocytosis.  Apparently if I have mammalian meat allergy I won't be able to eat beef or pork because of some kind of enzyme in the protein.  Well, I would rather have that than mastocytosis but I really don't want to have either, so hoping the tests come back negative!!!  No changes in the cyclosporine dosage.  I am not supposed to eat any beef or pork until I hear back from the tests.  We were going to have ham for Thanksgiving, so I think I am going to risk it and take more benedryl that day to counteract the possible mammalian meat enzyme allergy. 

Had to arrive late at work due to Dr. Calm's appointment, then leave early in the afternoon because they messed up my blood samples for the tests and I had to go and get poked again.  Apparently they took "serum" samples and they needed whole blood. Wonder what the difference is, because it comes out of my veins the same.

Very on edge this evening, suspect it is because The Legs are misbehaving. The pain will get better or it won't.  I just am having trouble sitting still - have dancing legs!  Very hard to concentrate, and little things are getting on my nerves.  I will practice my breathing this evening and my biofeedback and try to concentrate on something else!

Monday, November 22, 2010

Revolt of The Legs

Living in Quandary

Have I mentioned lately I love my job?  Even with the travel, even with the pain, even with the fatigue I love doing what I do.  It's hard to define why I love it because what I do is not set in stone, it varies from day to day, sometimes it's not easy or pleasant, and physically even though it is a desk job it is becoming difficult to do.  I enjoy everyone I work with.  My bosses are great and supportive - plus they know what they are doing and are passionate about what they do.  It's intellectually stimulating and mentally challenging. I work with healthcare administration and healthcare finance which is a field I chose to work in approximately 20 years ago. I get to work with small hospitals all across the United States many in rural areas, and advocating for rural healthcare is another passion of mine.

My sister said when I got this job over eight years ago that I had found my dream job.  She was right!  I campaigned for this job.  I could tell from my first interview with them that not only did I want to work there I HAD to work there.  It was a big change for me.  I went from mega corp to tiny corp; from tons of direct reports and fiscal responsibilities to no direct reports and no fiscal responsibilities.  I went from exasperated and aggravated to excited and engaged.

I am sad tonight, not about my job or my work, but about whether I am going to be able to continue with my job, my work.  My body is not recovering well from my last trip.  I fear increasing disability, increasing medication, increasing pain.  I am wondering, am I now really disabled?  Is there someway to absolutely know?  I have great amounts of will power and have been using it to keep going but now even that may not be enough.

I experienced a great deal of pain in Michigan, and medicated and kept going even when I shouldn't have.  Even getting in and out of cars was becomming difficult. Coming back, in addition to the adventure of the flying puke fest, I experienced a great deal of difficulty walking and standing.  Flying is always an issue because of the walking necessary, and the standing necessary, and getting on and off planes while hiking a PC and a carryon full of medication.

Last weekend was frightening as the leg malfunctioning continued to evolve.  Saturday walking was very difficult.  I felt like I was shuffling along or using my thigh muscles to scooch the legs where they needed to go.  Saturday night the pain was pretty bad.  Sunday morning I woke up with big round numb areas in the bottoms of my feet and my legs tingled all the way up to my hips.  Before Sunday, the tingling only reached about six inches above my knees.  I felt very tired.

It is now difficult to get up from a couch or a chair.  I feel my legs are very weak.  The pain increases and decreases throughout the day but I ended up going home early today because of it.  Driving is hard, sitting is hurtful, and walking is an ordeal.  My incontinence issues started increasing almost two weeks ago and have settled into a new kind of normal that is worse than it was before Michigan.

I saw my PCP today and we discussed these issues.  I could not move my left leg, my left knee, my left ankle, my left foot against resistance.  I could barely move my right leg against resistance.  My reflexes have been gone almost a year now, and I think the damage decided to take another leap forward (or perhaps that would be a leap backward??).  I am much worse than I was a couple of months ago.

My PCP wants me to get EMG testing, even though I told him that Dr. Sassypants said there really wasn't anything anyone could do. I don't have structural issues that can be fixed. He also wants me to go back to the local neurology group which I really don't want to do.  I have issues with that practice, and he really doesn't have anyone else he can refer me to.  He knows why I don't want to go back there but felt like this is urgent enough it wouldn't pay to try to get established somewhere else out of the area.

When The Headache was in its full undiagnosed horror I had a neurologist, Dr. Dense, in that group that not only did not listen to ME, but also ignored the advice of the neurology group she sent me to in St. Louis.  She refused to prescribe the only medication that works for The Headache which they had prescribed in St. Louis for a few weeks until I could get back to her. After a month without any pain relief she told me she would only prescribe the medication that worked (indomethacin - NOT a narcotic)  if I signed a paper saying I would move my care to another practice! Totally unethical. I'm not thrilled at the prospect of seeing her again.  My PCP says he will speak to the head of that department but I don't think I will have any luck getting reassigned to a different neuro.  sigh. I have absolutely no confidence that Dr. Dense will be able to help me at all.  A waste of time, money and effort that I can ill afford.

Per my PCP, I am to stay off my legs as much as needed to keep the pain at bay.  Unfortunately that would preclude walking at all.  I am to let them know if it gets any worse.  I was told that I may need a fancy schmancy rollerator walker soon, and may have to retire BLING.  I fear even that would be a stop gap measure until I am forced to full out wheelchair time.

My PCP has modern views on pain management, and wants me to keep him in the loop if I need stronger narcotics, and told me to keep taking the Soma also.  With so many people having issues getting adequate medication for pain relief, I am very grateful that my PCP understands and is willing to prescribe.  I am very sparing in my use of pain medication (although I did take some tonight) and am still working on prescriptions I filled last spring.  He would like me to take more and do it on a schedule in order to stabilize the pain, but right now I am willing to be in some pain in order to function at a higher level.

I have an appointment with Dr. Calm to discuss the cyclosporine and The Hives tomorrow.  I took blood tests for that today.  All these appointments are crammed together because I had to reschedule while in Michigan because we extended our stay.  Already tired of seeing docs!

Going to bed soon, as my pain meds and my antihistimines are making me sleepy.  Hoping that maybe The Legs will be better by next week.  Sigh again. This way I can delay making any decisions I don't want to!!

Hey, at least the cankles are better!!!  And if I have to get a rollerrator walker, I'm gonna trick it out with spinners, rear view mirrors, and a special paint job - and maybe curb feelers and some fuzzy dice, and one of those horns that plays songs!!

Sunday, November 21, 2010

Ptosis And Miosis

Symptoms of Hemicrania Continua

Since my occipital stimulator was installed in June 2009, when The Headache gets worse I can't always tell by the pain. The ONS does a pretty good job on most days in minimizing the pain. It does not totally remove the pain, but it is much less disabling than it was before I had my electronic nerve zapper.

Even with reduction of pain, The Headache continues to exist. One of the ways I can tell is that the other physicial symptoms of The Headache continue to march onward regardless of occipital stimulating wonderment.

In addition to the almost ever present nausea, I have  a runny nose on the left side of my face where The Headache resides. I have swelling under my left eye. I have nerve pain at a diagonal across the left side of my face (although the ONS has helped this a bit). I have ptosis of my left eye (as seen in this picture) which is drooping of the eyelid(s).  I have miosis of my left pupil (as seen in this picture but because of the color of my eyes and the ptosis may be difficult to discern) which is an abnormal contraction of the pupil not related to light. Sometimes I have tearing from my left eye only.  My left eye will turn in towards my nose. I have brain fog and confusion.  I continue to wake up every night at 3 am if I am lucky enough to be asleep by then.

Drs. Elisabetta Cittadini and Peter Goadsby recently published an analysis of hemicrania continua (The Headache) in the journal Brain A Journal of Neurology "Hemicrania continua: a clinical study of 39 patients with diagnostic implications" (Brain 2010: 133; 1973–1986).  In the following quote they state what has been clear to me from the beginning - hemicrania continua hurts - really really really badly hurts!!!
Hemicrania continua has been considered a syndrome with moderate intensity but with exacerbations of severe pain according to the current criteria (Headache Classification Committee of The International Headache Society, 2004). We found, in the majority of our patients, the range of the continuous pain was anything between 1 and 10 out of 10 on a verbal rating scale. In addition, 70% of patients described their painful exacerbations as excruciating and almost half of the patients considered them as the worst pain they had ever experienced with a severity of anything between 8 and 10 out of 10 on a verbal rating scale. These findings suggest that the pain in this condition, although typically fluctuating, is indeed more severe than previously considered. The data reinforce the need for rapid diagnosis and effective treatment to minimize unnecessary suffering. (Cittadini & Goadsby, Brain, 2010, p 1981)

The current IHS criteria for Hemicrania Continua is:

Persistent strictly unilateral headache responsive to indomethacin.
Diagnostic criteria:
   A. Headache for >3 months fulfilling criteria B-D
   B. All of the following characteristics:
       1.unilateral pain without side-shift
       2.daily and continuous, without pain-free periods
       3.moderate intensity, but with exacerbations of severe pain
   C. At least one of the following autonomic features occurs during exacerbations and ipsilateral to the side
      of pain:
      1.conjunctival injection and/or lacrimation
      2.nasal congestion and/or rhinorrhoea
      3.ptosis and/or miosis
   D. Complete response to therapeutic doses of indomethacin
   E. Not attributed to another

In the article Cittadini and Goadsby urge placibo controlled testing with Indocin to rule out HC for unilateral unremitting headaches.  I know one of my first steps to getting a correct diagnosis was an immediate reaction of pain reduction from a bolus of indocin given intraveniously.  I cried and panicked when the incompetent local neurologist I had refused to prescribe it.  My headache specialist I ended up with in Kansas City (Doc Optimist) said only people who actually have indomethacin responsive headache conditions felt like I did if we were refused indomethacin.  After all, for most people it is like taking naprosyn or ibuprofen or acetaminophen - not hardly an effective pain reliever for severe pain UNLESS you have a condition that it is almost the ONLY pain reliever that works.

They also state "the majority of our cohort showed signs of agitation, or restlessness, or both, and nearly one-third were aggressive during severe pain, consistent with the neuroimaging findings of hemicrania continua, which suggest some important part of the pathophysiology occurs in the posterior region of the hypothalamus, as with the other trigeminal autonomic cephalalgias." (p. 1983)  This also corresponds to my experience: I become very agitated and pace with The Headache when it gets going, where with migraines my instinct was to go to a quiet dark place and lie still.

Eight of the 39 patients followed in the article received occipital nerve stimulators, and so far six of the eight have shown great results.  I hope that this will mean that insurance companies will loosen up their purse strings for this rare condition and pay for this medical device and its installation/upkeep, because almost all of the medication remedies outside of indomethicin were ineffective.

I'm going to go and ice my head and see if I can get The Headache to quit playing games this evening.  Ready to go at it again tomorrow!

Saturday, November 20, 2010

Want to Run Away

Bad Day, Bad Week

Ready to run away.  If I could get away from The Headache, The Belly, and The Legs I would.  I guess all that would be left would The Arms and The Back....hmmmm guess that's not practical.  Sigh.  My problems are inescapable but wishing they weren't.

New diabetic medicine, more thyroid medication from a new specialist, an endocrinologist, Dr. Kid (he seems very very young!).  The cankles are disappearing so maybe the low thyroid was to blame for cankle hell.  Will be glad to wear regular shoes again instead of the cankle friendly models I have been sporting lately. Not excited about changing diabetic meds since my diabetes is the one thing in good control...but he had a point that Avandia has had some pretty bad press lately, so instead of Avandia and metformin I am taking Actos and time released metformin.  Can't tell any difference so maybe that's a good thing!

Bad headache day Friday.  Not to the emergency room point, but bad enough I had to take major meds in order to NOT go to the emergency room.  Payback for the week and the traveling.  My head is still not working today, but I am trying to go medication free since I had things to do.  Actually napped for a while today which is really rare for me.

I feel ready to throw in the towel this weekend.  No energy, no mind power left. I'm tired of dragging my legs around trying to make them work, tired of the pain, tired of being tired, tired of coping, tired of traveling, tired of work, tired of things NOT working, tired of medication, tired of being sick, tired of doctors.  I want to jump up and down and throw a screaming fit about it all!  But I'm too pooped to do it.  Being old and tired and sick sucks, can't even throw a decent tantrum any more.

I knew I would pay a price for traveling to Michigan.  I went anyway.  This is my own fault.  I could have said no.  Too late now.  I need to quit griping and just live with the consequences.  I'm just not as tough as I used to be, not as tough as I want to be, not as tough as I thought I was.   Arrrrrrgh.  I'm just going to have to suck it up and get on with business.....if I can.

Thursday, November 18, 2010

Barf Bag Blues

Torture by Airflight

Flew home yesterday from Michigan with a hop through Atlanta.  The Headache didn't like me backpacking my PC across the airports, didn't like me lugging my luggage to check in, didn't care for the experience of flying at all. 

I had been lucky all through my 20 days working in Michigan because The Headache only flared up a couple of times.  The Legs were not so good but I already knew I was going to suffer on that count so I was prepared for most of the ouchiness.  The flight back to Missouri was pure torture.

I knew The Headache wasn't good when I lost my driver's license twice in 15 minutes by putting it in different pockets of my purse, and then misplaced my boarding pass three or four times. I almost couldn't stand long enough to wait for the hand pat down person at Flint, as apparently someone was "busy taking care of things" and couldn't relieve the female TSA agent to do my pat down. Now they not only checked my waistband (a new item in the pat down) but they checked their gloves for explosive residue.  However they didn't check the bottom of my feet.  Hmmm - changing things up for the holidays!!!

Many people admired my cane Bling, especially other cane users.  It's sorta like driving a fancy car - you look at what every one else has and compare features.  I did get a courtesy pass so I could board early because I was barely hanging on by the time the flight left.

I was in the middle seat on both flights between the window and the aisle.  In the first leg, I was next to a darling older lady who decided to eat some peanut buttery homemade snacks midflight.  I was already in quite a bit of pain and very sick to my stomach (trying desparately not to take pain medication because I had a hour and a half drive waiting for me in Missouri to get home) when she started snacking.  She didn't look well herself and I didn't want to say anything becuase she looked like she really needed the snack.  I covered my face and tried to breath through my mouth, because smells get amplified when the headache gets bad.  She would put away the snack, and just when I thought it was OK to unmuffle she would crack open the peanut butter warehouse and pop in another one.  Auuuugh! 

I got some ginger ale from the flight attendant, and scarfed down some phenergan trying to quell my growing nausea. My neighbor decided that the airplane pretzels were not enough and went for the peanuty goodness again. The smell!  Every crackery crunch flew more peanut butter smell into the air. Finally I just had to quickly grab the barf bag and let go. I hate public hurling, but there was no way I could get up, get past peanut lady and get down the aisle to the bathroom. I didn't need to say anything then about food smells, as no one around me was eating after that!!!

The poor peanut lady told me she had several headache issues including just having had a nerve operation for trigeminal neuralgia.  I knew she didn't look well.  She had on a fentanyl patch and was eating to help with HER nausea.  Her misfortune to be stuck by me, the puking head pounding idiot. 

I was barely able to carry on a conversation with P.P.L. because The Headache was not happy at all. I hate it when I can't actively and thoughtfully listen.  I somehow inspire people to tell me their stories.  I must have been some very innattentive jerk in a former life because now when some strangers see me within two or three minutes I am hearing details of their lives and misfortunes...or maybe I just LOOK like a listener??

I left my neatly closed barf bag in my seat as I deboarded the plane, as I had no opportunity to get rid of it inflight: I kept having to use it.  Hard to have half your mind trying to listen, and half just thinking "don't barf don't barf don't barf" - no wonder The Headache hurt!

I stumbled off the plane in Atlanta from the cattle car cheap seats, caught up with my coworker (who luckily wrangled herself some business class tickets) and unfortunately had to get across the airport to another terminal where the appropriate gate was opposite where we arrived via the tram.  More walking.  I bought some Coca Cola hoping to drown The Headache with caffeine.  They were just starting to board when we got to the gate.  No rest.  I did get to reset my occipital stimulator before my group boarded.  I pushed it as high as I could stand to bear it.

I get on the plane (again in the middle seat) and down some benedryl with the soda. I was still extremely nauseated but the benedryl helps the pain a little. I had a very nice gentleman sitting in the window seat next to me but the lady in the aisle seat next to me smelled like sour liquor - someone who had probably had too much to drink a day or two before.  Probably not noticiable to anyone else, but when the nose goes into superpower mode with The Headache people with a day old drunk are truly nasty smelling.  Ewwwwwww!

Another hour to go in flight, head pounding, nausea rising - I get a wet paper towel from a flight attendant and try to keep my eyes covered and keep my temples cool.  They announce that the nearest bathroom is for business class only (my lucky co-worker!) and that we coach people would have to go to the back of the plane.  I think - just my luck - a bathroom in sight and I would have to run to the back of the plane.  I decided if the need arose I was going to go for the business class toilet and vomit on whoever tried to stop me.  I made sure the barf bag was visible in the seat in front of me - ready for action!

The lady next to me droned on and on and on in coversation with some guy in a row behind and across the aisle.  They didn't stop talking for the entire flight, and loudly (at least it seemed so to my over sensitive ears) discussed totally inappropriate for public conversation personal issues. It was almost hallucinogenic as their conversation wrapped around my echoing head like a stinky fish wrapper from the meat market. I knew way too much about liquored up lady and lonely guy across the aisle by the time we touched down.  Luckily she breathed in his direction instead of mine so BONUS I was able to avoid barfing again.  Yeah!

At the airport, we waited and waited and waited and waited for the luggage to get to the carousel.   I grabbed my luggage once it meandered around and finally got to my car and headed home.  I was able to stay awake driving by once in a while stopping and resting, and then running the air conditioner in the cold autumn air and once in a while just smacking myself in the face.  WAKE UP!  A long drive in the dark and in the rain.

My head hurts tonight because I haven't given The Headache its allotted rest time.  I worked a little this afternoon, but called it quits before long because The Legs and The Headache and The Belly were all ganging up on me.  Hoping for a better day tomorrow!

Wednesday, November 17, 2010

Love Beats Hate: The Golden Rule

The Ethic of Reciprocity

One should treat others as one would like others to treat oneself
One should not treat others in ways that one would not like to be treated
The quote above is from the Wikipedia entry on The Golden Rule.  This is a standard that I have tried to live my life by.  It is a standard I was raised with.  In the rural Midwest almost everyone I knew was familiar with this concept and most tried to live this as best they could.

Being a Christian, I associate this rule with my faith.  However, this is a tenet in most major religions and philosophies in the world, ancient and current.  It is a rule you can apply if you are an atheist, a deist, an agnositic, a Muslim, a Christian, a Hindu, a Wiccan, or any other belief system.  A child can understand this, an adult can understand this. 

Also called the ethic of reciprocity, applying this rule to daily life and interactions with others relies on empathy for others, reflecting our behavior towards others onto ourselves and feeling the effects that behavior would have as if we were the ones on the receiving end.  For this ethic to work most effectively, each person should feel empathy for others.

How do we get people in this self centered self serving world to be empathetic?  How do we get close minded people to understand when they hurt others with words or actions they are actually hurting themselves?  They are caught up in the "moment" absorbed with inconsequential celebrity.  Their own hubris drives their actions, with their inconsideration of others amplified by their own inflated sense of importance.  Humble has become a term of weakness rather than strength.  Caring for others is a weapon to turn against someone.  Popularity rules.  Bullies win.  This is WRONG.

I wish I had an answer for this.  I was taught these rules from a young age.  I fear the distractability of technology is diluting this message each generation.  I see the reach of the bullies and the name callers and the haters extended and magnified by technology, to the point that those being bullied feel surrounded with no way to escape.  Yet I see my great nieces and nephews and young nieces and nephews living loving and caring lives, practicing the Golden Rule (even if they don't call it that!) in their everyday life.  

Wishing there was a way to magnify and extend empathy that was as popular as as all the hate talk.   A recent post from Sue at InnerDorothy about the play "The Laramie Project" was inspiring. Thoughtful empathetic adults found a way to turn the tragic torture and murder of a young gay man in Laramie Wyoming into a teaching opportunity.  Hoping they continue with their efforts and the education continues.  This is the kind of hate crime that following the Golden Rule would prevent.

Try searching the internet using the term The Golden Rule and see where the net takes you.  There are serious philosophy research papers done on this, organizations based on this, essays searching for the answer to these questions that have been with us from the beginning of time.  Happy voyaging.  Hoping that YOU will be the one that changes the life of another by applying the Golden Rule and better your life in the bargain.

Saturday, November 13, 2010

Deer Season in Michigan

Motel Availability Issues

Glad I am staying until Wednesday of next week since we have some issues that need to be taken care of software and hardware wise on this installation.  However, I only brought enough clothes for 16 days, I brought barely enough medication for 20 days, and I have appointments that I have had to reschedule for next week.  Sigh.  Did some laundry this afternoon so I have clean clothes for next week.

Rescheduling plane flights so close to Thanksgiving has been expensive, and to our dismay we found that we have to change motel rooms becuase this weekend or maybe Monday is the start of deer season in Michigan, so the motel is booked.  We are moving rooms at the same motel: my co-worker got the honeymoon suite with the red heart shaped whirlpool tub, I get the claustrophobia room which appaently is so small the clerk said if I had difficulty breathing they could see if they could get me another room.  That must be mightly tight quarters!!!  They tried to get me to say I would sleep on the couch in the honeymoon suite and I said nope, I prefer to be oxygen deprived in the tiny room.  I'm a small person, so if it's a munchkin room it should be fine for me.

I have seen a lot of plaid today as I guess the hunters have started coming into town.  Hoping the bullets fly far outside of town and far away from the motel I am staying at.  Being a country gal myself, I get nervous when people who don't handle a gun all year come in droves to shoot high powered rifles in the woods.  99.9% are great sportsmen and sportswomen, but the 0.1% that get "deer fever" can be very dangerous to the remainder.

Having some pain this evening but I haven't taken any pain meds for another day because The Headache was starting to complain.   I feel so stuck betweeen  one pain problem and the other, with treating one causing problems with the other.  Just call me gripey today.  Hmph.

Planning on doing absolutely nothing tomorrow except move rooms.  At least it forces me to organize my luggage and repack. :(

Wednesday, November 10, 2010


In it For the Long Run

Today I was reading a post about chronic pain and "suffering".  Suffering was defined as how the person with chronic pain perceives and responds to the pain.  I'm not much for suffering.  I am more into "enduring".

For me suffering is a state that has no end.  Suffering makes me a victim of my pain.  Endurance implies that I am accepting the reality of the pain yet not victimized by it.  I hunker down and bear it the best I can.  I endure.

Endurance is like running a marathon - its grueling but eventually there is a finish line. Sometimes I finish the race and sometimes the race is too much for my body and spirit to bear. Those times I fall by the wayside and the pain wins, but I don't suffer.  I hurt. I endure.

I know that my pain issues will probably never be resolved.  I don't pity myself (except on my three alotted self pity days per year).  Even at the worst times I try to put myself and my pain in perspective (if I have any brain cells left that are not occupied with my immediate distress).  There are people with worse issues than me.  I don't have the co-morbidity of depression with my health problems, which I thank God for.  I don't suffer. I endure.

The Legs have been bad th last couple of days but I have been medicating fairly adequately.  I persuaded my boss that it would be OK for me to work at the client's until next week.  He was concerned that I am overdoing it.  That horse left the barn last week so I am not worrying about it.  The company I work for is marvelous, wonderful, fantastic!  My boss and fellow co-bosses are great.  I push myself and they give me a reality check about what is wise for ME to do, not what benefits the company the most.  I am pretty sure I can make it through until its time to go home.  I endure.

Tuesday, November 9, 2010

Legs Legs Legs

Need Magic

Have been using my cane BLING and taking pain medication in order to get by this week. As the pain increases, the time release medication lasts shorter and shorter periods of time. Instead of 12 hours, it seems to lose its umph at about 4 hours. Attempting to sit as much as possible but it is difficult.

My legs are on fire this evening. I decided to rest in my hotel room this evening, not going out to eat with my co-workers. The pain is not good, but I am waiting until 12 hours have passed before taking another pill. It is becoming hard to get in and out of cars in addition to having issues with walking standing and sitting. Sigh....

The client would like me to stay another week. I am willing to stay, just not sure how I will force my body to my will. They are wonderful people, and I understand their wish to have someone here for another week.  Working on problems for other clients from the hotel room this evening.  I need a magic wand - bippity boppity boo - and all will be well. Wishing I had a fairy godmother!!

Sunday, November 7, 2010


My Mom Turns 80

Bumming tonight in my Michigan motel room.  It's a nice enough room.  The people are fantastic.  Just missing home.

My mom turned 80 today, and my brother (who is actually quite the cook) made a cake for her.  Looks like she was enjoying blowing out the candles!  Hopefully my other brother, and my sister and her husband were able to stop by.  She is a third year survivor of colon cancer and is a lot more frail than she was.  Wishing I was there too.  I left her a birthday present before I left, but its not like being there

Off to work tomorrow, have been laying low over the weekend with a brief jaunt to a local city that was like a mini-Bavaria.  Interesting and touristy. Felt sorry for everyone in drindle skirts and leiderhosen.  Pain has been bad off and on, but am off the dilaudid and taking some oxycontin so it can "time release" and hopefully not make me hive as bad.  Long week ahead, will be even longer when I am feeling homesick.

Friday, November 5, 2010

Thinking of Thanks

Thankfulness in Spite of Gripiness

I am a griper.  There - I've said it.  If you read this blog on a regular basis you know it.  My life is full of forces I cannot control, and sometimes I complain.  Well, REALLY a LOT of times I complain!!!  I used to say "if I'm not complaining, I'm not happy!" and now I think "if I'm not complaining, I might not be breathing - better check my pulse!!!".   I complain that much. sigh.

Yet my life is truly blessed, and I am thankful for many many things.  For your perusement I am going to list some of my favorite things to be thankful for:

  • My family:  My 80 year old mother, my sister, my two brothers, and lots of nieces, nephews and cousins
  • My pets: My dachshund Augie Von Hidenpooper, my parakeets, my adopted cat Clarence
  • Where I live: a little ranchstyle home in the countryside with very good neighbors
  • Refrigerators tied to trees (an Ozarks tradition I find hilarious)
  • Computers - without them I couldn't make a living, or connect to other people so easily
  • Internet friends:  I would never have met any of you if there was not an electronic world to meet in
  • Electricity: It powers light and heat and computers and the zapper on my head
  • Head zappers in general (I love mine - wish everyone that would benefit had one too!)
  • Cleveland Clinic and Dr. Nagy Mekhail in particular
  • My personal care physician who has the patience of a saint and the persistance of a bulldog
  • My employers who are a ragtag bunch of goofs that put up with me on a daily basis
  • My co-workers who carry more of a load because they work with me and my illnesses. sigh.
  • Benedryl - a wonder drug
  • Airplanes because driving a car everywhere takes a long time
  • Friends in general, even when I haven't been such a good friend they have been exceptional buddies
  • My job which is interesting and diverse
  • Skunks because they have finally moved out from under my sister's house
  • Possums becuase they are trying to move into the skunk space under my sister's house
  • My brother's dog Beanie and my sister's puppy Gracie
  • Touch typing - the ONE high school class I have used almost everyday of my life
  • Microwave ovens
  • Clean water
  • Plenty of food
  • Cankle ready shoes
  • Books
  • Optimism
  • Hope
  • God
  • Monty Python skits
  • Antiques Roadshow
  • Naional Public Radio
  • St. Jude Medical/ANS stimulators for my head buzzer
  • Elmo
  • Feather pillows
  • Dingo dog treats
  • Fall weather
  • My cane BLING
  • Luggage with wheels
Gosh, I'm running out of things to write, not because I am unthankful, but because my brain is on medication this evening.  That reminds me: I am Thankful for my Medication - even when it doesn't work... Or when it gives me hives.... Or when it makes me throw up....  oh, I guess I'm back to griping again!!!

Bad Day Bad Back

Bad Business

I think I'm going to have to hang up my traveling shoes pemanently.  The Legs gave out on me the other day, not wanting to walk.  Last night and today I am incapacitated by pain.

Pelvic pain and The Legs are giving me fits. Last night I took dilaudid with Soma trying to get past the pain and sleep.  This morning the pain was just as bad, so I took a partial tablet of dilaudid along with Soma.  I got to the client hoping I could just work past the pain and do what was necessary. 

The pain just kept getting worse and getting worse until by 10 am I could barely stand to stand.  By 11 am I was trying to stay sitting still and the pain just kept coming, with additional fun side effects of muscle cramping in the bottoms of my burning feet and sudden surges of pain that doubled me over.  By noon I told my boss and coworkers I had to go back to the motel room.  I had no choice but to try to rest and recuperate in order to go again tomorrow.  Not quite sure how I am going to get through the next week.

I took more pain medication and slept most of the afternoon and this evening.  Now The Headache is all riled up because I took pain medication.  I am finding it very difficult to stand, walk, or sit.  I am sick to my stomach partly because of the pain, partly because of the pain medication.   I am itching everywhere because of the pain medication and The Hives. Hoping tomorrow will be better.

I am disappointed that The Legs are not behaving.  I am discouraged that the pain won't stop.  I am worried that I am falling down on my mission for my client and my employer.  I am mad that my health is interfering with what I want to do and what I need to do.   I'm not sure what to do if this doesn't improve tomorrow. This stinks. Big Time.

Tuesday, November 2, 2010

Malfunctioning Legs

Need That Bongo Sound Effect

Bongo Feet sound clip

I've had a hard time this week with pain especially leg pain.  Finally the other night I decided that I was being stupid so took some of the medication I carry with me just because of this problem.  Instead of impairing my ability to think, I was able to think of something besides pain. I think my concentration was improved rather hindered.

I have been standing a great deal the last few days, and walking back and forth between two buildings at the client we are working with which is a couple of blocks.  Doesn't sound like a lot of effort, but my legs have been getting weaker each day.  I would hope that using the durn pegs more would make them stronger, but they are just not cooperating.

Today I stood up from sitting in a chair and working on a computer for about 30 minutes and my legs wouldn't move.  I couldn't pick my feet up.  I couldn't scoot them forward.  My body had forward momentum but the legs and feet were glued to the floor where I stood up.  I don't have good sensation in my feet but this was different.  It was like sending a message to the feet - move Move MOVE - and they weren't paying attention.  The legs weren't asleep (as from a pinched nerve) they just weren't obeying.

I caught myself on the desk where I stood since I was my generally hell bent on getting somewhere self and had started moving my whole body forward, not realizing my legs were nailed to the ground.  I felt like I was in a cartoon where the feet move in a blur but you don't go anywhere.  I thought if I only had that bongo sound effect I could just skedaddle and get going!!!  Pyoooooiiing!!

I managed to unglue my feet by actually sliding my legs forward using my thigh muscles and lifted my feet and tried to stomp them into submission the same way.  I sure was glad I had BLING with me!  I have been using BLING daily but even BLING was not enough motivating force today.  I have had to kind of lift my legs tonight and shuffle along but I'm able to ambulate.

Tonight I am sitting around the hotel room hoping the legs will revive.  They are hurting, tingling, very weak and pretty numb.  The huge hives that were on them last weekend have shrunk to normal hive size, so I don't think this is due to angioedema.  Not sure what to do if The Legs just quit on me.  I wonder if this is what Dr. SassyPants meant by saying he didn't know if I could make it through this fall traveling.  Am halfway afraid to take Soma tonight in case that is what stopped me in place like a mouse in a glue trap, but also know if I don't take it I won't be able to walk because of the pain. 

I guess if I get stuck again, I can get myself a fancy slide along walker - one of my bloggie friends has a fancy rollerator walker that I am quite jealous of.  There is a bright side to everything and the fact that there are fancy rollerator walkers I could shop for is definitely a bright side.  I wonder if they make walkers out of carved aluminum like BLING??  I would like my chariot and my pogo gogo stick to match.  Maybe I can get mini-spinners for the wheels!!!