Monday, February 28, 2011

Too Sleepy

Driving is Difficult

Went to work today for a half day.  Yeah!!!  I would have had MORE than four hours work but it took me over two hours to drive my normal 45 minute commute.  I would drive a couple of interstate exits, and then I would have to pull off and sleep, then drive a couple more, and then pull off and sleep.  Not entirely safe, although I felt I was able to judge the amount of sleepiness (I have had this problem before) and quit driving as soon as sleepy thoughts were crossing my mind.  Going home I did not have this problem. Hoping tomorrow will be better.

My mom refuses to go to the doctor and she feels fine today so convincing her is even harder.  I give up.  I will wait for another time or other symptoms and see if I can get her to go THEN. Arghhh!

We had our weekly television viewing of Antiques Roadshow this evening.  I don't know what we find so fascinating about that show, but it is the one television program we all enjoy watching.  It is much more interesting to watch it in a group for some reason.  We discuss different objects and comment about them like "I don't care how much that is worth, I wouldn't have it in my house" as if we have the type of home where you hang $100,000 paintings over the fireplace.

The duragesic patches are here to stay unless I have some drastic side effect that I can't anticipate.  I know that the patch is part of my sleepytime problem.  One of my bosses suggested I try working from home using Skype.  Hadn't thought of that.  Hoping my internet service stays up reliably so I can give this a try.  My pain levels are up tonight but that is after three days in a row of increased activity, so bring it on I say!  I'm so glad to get out and do something productive today. 

Am hoping for two days in a row for getting to work. I'll be WooHoo'ing big time if I get that done tomorrow!

Today is rare disease day, and The Mastocytosis Society put together a really good video of what it means to have a rare disease, particularily Mastocytosis and mast cell disorders.  I seem to have more than my share of strange, rare or unusual diseases so I am celebrating today as a good day to be alive!

Migraines in The Elderly

My Mother

Yesterday evening I had a scare with my mother.  She has had numerous mini-strokes so I try to pay attention to little things that might be going wrong.  She started feeling really seasick at about 5:30 in the afternoon.  I had phenergan she had been prescribed for nausea (she had a bowel resection a couple of years ago for colon cancer) so I gave her one.  She couldn't stand the smell of food, and had a terrible headache that seemed to be only on the right hand side of her heada and wanted to go lay down in a dark room.  Migraine sufferers, sound familiar?

She threw up despite the phenergan at about 6:30 PM and soon after the headache which had been getting worse and worse dissipated.  She was very very sleepy afterward and wanted to go to sleep in a quiet dark room.  I checked her two or three times last evening to make sure she had not had another stroke.  She seemed OK except for other symptoms of stomach upset, and is up and around this morning, with "sore stomach muscles" from throwing up and a weak all over headache.

I tried to get her to go to an emergency room last night.  I tried to get her to see a doctor today, but she is very stubborn and does not want to.  I am worried because she has never had migraines that I can remember in my 52 years on this earth.  She had some sisters who did but she never had migraines, unless she had them much younger and just never told me.  New onset anything in someone her age (going on 81) is not always a happy occurance.  I found some articles about migraines in the elderly but worry that it might be something more serious.  The progression she had was almost identical to my migraines when I had them, but I am afraid I may just be projecting my experience onto her symptoms.

What do you do with an elderly parent who refuses to go to the doctor, to go to an emergency room, or to urgent care?  I am upset and worried, but don't know what to do.  I want to bundle her up in my car and just take her but I am afraid she wouldn't even get into the car.  Big sigh.

Sunday, February 27, 2011

Day 6 Duragesic

The Patch

I have a picture of the duragesic patch. It is tiny. I have some tegaderm patches I am putting over it to help hold it on, as the first one wanted to pop off (I think because it is so small). I tried also securing the tegaderm ends with some paper tape that is supposed to be hypoallergenic but I had to take it off as I started breaking out everywhere it touched.

It is amazing that this little bitty drug delivery system is helping me so much. It doesn't appear that it could hold enough medication to make a difference. Another benefit for me is this drug bypasses my defective digestive system entirely. I can't throw it up, or have it pass on through without digesting.

I have slept the night through the last couple of nights. I haven't been able to just lay down and sleep since I don't know when. Hoping I can get caught up on my sleep deprivation reservoir and be able to have some stamina again.

The Headache just seems to be ignoring the duragesic medication. It is still marching on with it's worse every three or four days pattern BUT the medication is not making it more severe than it generally is. WooHoo!

The Belly seems to like the pain relief very much. My shortness of breath has stopped, as has my rapid heartbeat. My blood pressure has dropped, not back to it's normal 110/70 but at least out of the stratosphere where strokes happen. My hives are a little better because I am not constantly aggravating them with pain medication they didn't like. The itchiness is there but is much less than it was with dilaudid. So far, the duragesic patch has been a winner.

I still have significant pain (probably why my blood pressure is still not normal) but I have stopped the kind of hurt I could not fight against. I did not have the willpower or strength left to push myself time and time again into the lavapit of pain that physical activity has become.

I am hoping that this relief will continue, and maybe this year I can actually put out flowers and a garden and maybe go swimming a few times. Last year I had dropped even these few pleasurable activities I had left because of pain issues. I hope I can increase hours at work, and dare I say it, travel again?? I had to give up going to church several years ago, and before that I had to give up the nursing home ministry I participated in. I would love to get some of that passion back in my daily life also.

A grey Missouri winter day, not too cold, and not too warm. A good day for trying to do some house work...I hope I will be able to sweep and mop the floors and dust the furniture. Not too much to ask of my body.

Hope you all have a great Sunday and a fantastic next week!

Saturday, February 26, 2011

Day 5 Duragesic

A Wonderful Day

Had a great day today.  The pain has been in the background, but I have been able to function much better today than I have in months and months.

I was able to cook lunch, go to the pharmacy, shop for groceries, put up the groceries, cook supper.  This doesn't seem like much to most people but to do all those things in succession without having to rest for hours is something I have not been able to do for a long time.  I am not even too physically tired tonight.

I wonder how much uncontrolled pain has cost me in energy and functionality over the last few years.  I had to get to the almost non-functional point to realize that I needed to treat this seriously.  I am almost floating with happiness at being able to function almost at a normal level.  WooHoo!!

Hoping you all have a great day, and pain stays away in whatever form it manifests itself in.  I am more than a little tired and the neurontin makes me really loopy for a while after taking it since I have been using the duragesic patch, so I hope this post makes sense and my spelling is not too bad.

Things are looking up a little for my family members who were having health issues so I very much appreciate the thoughts and prayers. Someone somewhere must have heard! Many hard days and nights left for them but any improvement in very ill persons is great!!! Hope you all have a beautiful morning tomorrow!

Day 4 Duragesic


I have started on my second duragesic patch.  I think I am finally becoming physically accustomed to this.  Not sure why my eyesight is so problematic but I think it must be related to my very very high blood pressure going down. Most of the day I have suffered from a lack of depth perception.  I tried twice to drive, once to the gas station about three miles from home, and it was not a great success.  I decided to not put everyone elses' lives in danger by me driving on autopilot 45 miles to work.  I think the curbs are thanking me, as I ran up on a couple at the gas station.

I did drive over to my sister's house this evening and we had a pleasant meal and watched a show on television with her and my brother in law.  This has been a harrowing week in many ways for our family healthwise and since some of the problems are not mine to share just please keep us in your thoughts and prayers.  We all enjoyed an evening where for a few moments we could relax and forget all our problems.

My mother has not been weathering all the stress (not related to me and my multiple issues - these are old hat for us!) well.  I was glad to get her out of the house (and yes we took all our house doggies with us to play with my sister's puppy Gracie) to just wind down, have some tea, and chit chat.

With me out of commission much of this week, it seemed like the timing for other problems just stank.  I guess there is no good time for bad news but if I was feeling well and mobile I guess I would have felt like I was more capable of helping.  My mind has just been floating along most of the week.  I think I have been typing some things I am not sure even make sense.  Uh Oh, I just realized you might not be able to tell the difference between that and my regular writing!! Sigh.

I do think the duragesic patches are going to be a keeper.  I'll let my PCP know Monday as he was concerned because of my uncontrolled pain.  It seems to be semi almost (but not quite) controlled now - plus today The Headache went back to sleep instead of getting worse yet again.  WooHoo!

Friday, February 25, 2011

Day 3 Duragesic

Double Vision

I think the pain control has stabilized with the duragesic patch, and I no longer navigate by lurching throughout the house. Today the problem has been double vision. Increase your screen magnification to the max and wear two peir of glasses to sorta see kind of double vision.

The nausea is off and on not very good, but the overall pain levels have gone from an eight to a six, which is huge for me. My PCP wants it down to a four but I don't think I want to try stronger patches just yet. I am thinking that I may be able to increase the neurontin again since the duragesic is slowing my digestion down a bit. I may give it a try this weekend.

I was super emotional yesterday, and almost chipper part of the day today. Rollercoaster emotions from this stuff - not used to mood swings like this. I didn't try to get to work. I spent a good part of the day sleeping again, but the nerve pain woke me up this evening so I am waiting for it to calm down again before I try to go back to sleep.  The Belly is hurting too but hoping maybe everything will calm down at once. Sigh.

I'm ready to wake up tomorrow as close to normal as I can get. Tomorrow will be better! WooHoo!

Wednesday, February 23, 2011

Day 2 Duragesic

I'm So Dizzy

Did not go to work today - tried driving but my coordination was not good.  I did not feel right driving 45 miles when I was having a hard time driving just down the road.  Then I slept for several hours, waking up with The Headache hurting quite a bit this evening.

I am quite nauseous.  I am not vomitting which is a plus, but wondering if it is the duragesic building up in my system.  I tried taking phenergan and a couple of tylenol and changing the programs on my occipital stimulator to help with the nausea and The Headache.  The Legs and the pelvic pain is a little better under control which is a plus, but kinda hard this evening to think about eating anything.  Glad the pills are staying down!

The shortness of breath is gone, so I guess my PCP was correct - it was from the systemic issues that come from being in severe pain.  Just not sure how I am ever going to be able to balance The Headache against pain relief for nerve pain and stomach pain.  Wishing life was just a tad bit less complicated.

I will try again tomorrow to get around and get myself to work.  Hoping this calms down tonight, the nausea is a little better since taking the phenergan but The Headache is not cooperating.  I'm ready for this merrygoround to stop and I can get on with my life.

Tuesday, February 22, 2011

Day 1 Duragesic

So far so good

Started my day with no pain meds in my system. I kept my specialist appointment (actually saw their PA [endocrinology])and the meds were in at the pharmacy when I got there after the appointment.  The pain was godawfully horrid by then so I was glad to get the patches and relieved they are cheap.

The patches are tiny - about an inch long by a half inch wide. I also bought some tape/tegaderm to hold in it place since you wear it for three days. I took phenergan before putting the patch on my shoulder. I was glad I did because I got a chemical taste in my mouth and some dizzy feeling nausea. As the day went on I noticed these side effects less and less. No vomiting no hives so I am pleased.

The pain relief is not as good as a full dose of the dilaudid but I don't have the side effects either. It seems to take enough of the edge off so I can function. The pain has been so overwhelming that I have had great difficulty getting dressed or moving. The Headache seems to be tolerating it so far, and The Belly has calmed down a bit. Hoping this is the med that does the trick in stomping out the nerve pain.

A secret fear I have is one shared by anyone who has had cancer: what if this is cancer related pain? It seems so awful and unremitting that I find it hard to believe that there is not some dreadful disease process ongoing. I guess I will find out more answers when I see Dr. House in April.

Hoping that tomorrow the patch works as well as it did today. I feel confident I will be able to drive into work. Yeah!!!

Monday, February 21, 2011

New Medication For Pain

Sinus Tachycardia?

Went to my PCP this afternoon to talk about better pain control and my problems with shortness of breath.  My pulse rate was over 120 bpm and my blood pressure was quite elevated.  I was not surprised as I did not make it to work today because The Legs and the pelvic pain was terrible.  The pain was so bad I could not hardly tolerate driving because I had to push the pedals: I wished I had a car with hand controls.

Per my PCP the shortness of breath is most likely from the elevated heart rate which is aggravated by the elevated blood pressure which all come from elevated pain levels.  I told him the problems I am having with dilaudid - primarily hives and extreme nausea, and after three days The Headache wakes up.  I had the same problems with oxycontin, oxycodone, hydrocodone, hydrocodeine, and trammadol.  He decided we should try Fentanyl time release dermal patches.  I told him I don't have good luck with pain killers so please give me the lowest dose possible.  He said this will bypass my digestive system, hopefully causing less nausea, and I had taken this drug in ER settings without any hiving so hopefully I will not have any allergic reactions.

The dosage prescribed is 12 mcg/hr which is the lowest dose made.  My pharmacy had to special order it probably because most people need HUGE doses.  I just want to tip the pain scales in my favor, not drive my brain to la la land, although after a day like today la la land sounds pretty great!  I guess I will see what its like after I get the prescription.  Apparently each patch lasts three days which is just enough time to know if The Headache is going to object or not. 

I told my PCP my goal is to reduce the pain enough that I can function but not in a drugged manner.  He said his goal is to get my pain consistently down to about a 4 on a 10 point pain scale (Distressing pain: Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt) from the level eight (utterly horrible) it has been at for a while.

My PCP also asked if I was having weakness.  I said I felt weak but I was able to walk.  I told him I could not tell if I really was having increased weakness or I was just having aversion to pain.  Lately it has been hard to tell.  When driving today it really hurt so bad to accelerate the car using the peddles that I couldn't make myself drive for 45 minutes.  My willpower is waning or my get up and go has already got up and went without me. Ready for this episode in my life to be OVER.

The Headache is not playing well this evening.  I am looking forward to another sleepless night.  It is throbbing and thrumming with pain.  Maybe the elevated blood pressure has something to do with it.  Sigh.

I have a specialist appointment tomorrow I may have to cancel.  I don't know if I can drive myself there with the pain the way it is, and I definitely don't know if I should drive anywhere when I try using the fentanyl patch.  It is my endocrinologist and I am sure I can reschedule if needed.

With so many narcotics floating around here I am glad I invested in a safe to keep these scheduled narcotics in.  Temptation is a situation I don't like subjecting other people to, just leads to disappointment and resentment if someone succumbs. 

Bad Weekend


Have rested most of the weekend trying to get better. I ended up taking some pain medication last night. I just have no perspective on how bad I am hurting any more. Apparently it was much much more than I thought.

I have become habituated to pain. I have NO pain free days even with medication. Unless I pay attention to physiological signs like tremors, inability to sit still, rapid heartbeat, or high blood pressure the difference between some pain and more pain doesn't seem to matter until I pass the threshold of too much pain. I have cognitive difficulties some days - not sure if it is just The Headache or just too much pain all the time.

I am losing track of the days. I did manage to haul my butt to work Friday and do some prep work for my coworkers who are going traveling next week instead of me. I am so tired right now it is difficult to get up and get dressed. I fall asleep doing things. I am still short of breath and I have started getting night sweats. Not menopause - I got through with that within a year post hysterectomy. I think it is probably just the breathing. The pain meds did help the pain I feel when I breath so that was a good thing.

I slept semi sitting up last night on the couch. That seemed to help as I felt I couldn't breathe laying down. The pain meds helped with the burning sensation I had when exhaling - maybe it wasn't asthma making me feel that way. Chronic pancreatitis can cause pain in the same region.

I'm not taking any pain meds tonight so I can make it to work tomorrow.   I am not looking forward to the increased pain levels at all.

I told my boss last week that I fear my body is giving out and I am feeling even more of a sense of urgency in getting my coworkers up to speed. There are somethings I just won't be able to communicate that come from working twenty years in this industry. We have another install coming up this spring so I am wanting to get everyone as up to par as quickly as possible for this.  My biggest fear is letting my company down.

I think I am going to file for short term disability again.  I actually had the qualifying event late November but I have been hoping I would be better and not need to file.  I hope there will be no complications with the paper work.

Sitting here with my little chihuahua buddy Emmitt re Squeaks re Baby WaWa asleep in my lap. He is now three and a half pounds and my vet says he doesn't think Squeaks will get much bigger. I am used to big dogs that grow for a couple of years. I guess chihuahuas only grow for a short while.  He likes to sleep a LOT so I guess we are a matched pair.

Hoping that next week finds you all well and hale and hearty.  I'm hoping it finds me at work.

Friday, February 18, 2011

Bronchitis Breath

Gasping for Air

I am now off antibiotics a few days for The Lungs.  The bronchial spasms have been gettin worse and worse.  Tonight I may sleep sitting up if I sleep at all because I feel very breathless.  I feel s tickle in my left lung but have not been able to cough the problem out.  If it gets worse tomorrow then I will have to go the emergency room since my doctor is not at the office on Fridays.

Trying to compose a post tonight (or morning) but coherant thought is hard to come by right now.  I hope to be able to go to work tomorrow I have way too much to do to be sick.

Wednesday, February 16, 2011

Lost Day

Sleeping The Day Away

Yesterday The Headache was very active, so I took benedryl and phenergan.  Maybe a touch more than I was able to handle.  Today I could not stay awake.  It might be because I did not sleep very well due to The Leg pain and pelvic pain (because I did not take any narcotic pain killers yesterday) or it might be that I took too much medication.  I took what was a normal amount of medication for me -  a total of 50 mg of phenergan for the day and 50 mg of benedryl.  Maybe it was a combination of both too little sleep and too much medication??

I have not taken any pain relieving medication today.  I have slept most of the day again.  I got up at 6 am like I do when I am planning to get to work at a regular time.  I fell asleep taking a bath.  I got dressed but fell asleep when I sat down to put on my slacks.  I sat on the couch to put on my shoes and fell asleep again.  I then got my stuff together to go out to the car but thought I need to sit and rest a minute.  The next thing I know its NOON.  I tried to get awake but I could only go a little ways and then rest and fall asleep again.  I gave up and called in.

I am trying to teach and train the new gal and guy as much as possible as quickly as possible.  I fear my body just isn't going to keep going no matter how much I want it too.  My will power just cannot overcome this any longer.  Things like today keep happening that I cannot plan for.  It is making me extremely aggravated...if I wasn't so durn sleepy!

Trouble breathing today too.  I am off the antibiotics but still using the inhaler.  Maybe that's why I was so sleepy?  I am still sleepy even now and I have slept and slept and slept.  The Headache is still way above normal but much better than yesterday.

Praying for a good night and a great morning tomorrow and a full day of work.  I have things to do and this lethargy is in my way.  Maybe the sleepiness will put me to sleep tonight because I am hurting quite a bit from The Legs.  I could use a great side effect tonight.  Yes sirree Bob!

Tuesday, February 15, 2011

Bad Headache Day No. 2 2011

My Pain Gauge is Getting Full

This is typical for me.  The pelvic and leg pain has been horrid.  I had been avoiding straight narcotic pain killers because of the complications from using them - notably the nausea and worsening of The Headache.  My blood pressure was going way too high because of the pain.  I thought "Stupid you, use the medication you were given" and started using narcotic pain killers regularly, but in teeny tiny doses.  I hoped to avoid the unpleasant consequences by taking much smaller amounts.  I thought I had succeeded until today.

The Headache has come roaring back today.  I have switched up my stimulator programs a few times and will try one more time before bed.  I am getting ready to pack The Headache in ice for awhile and see what happens.  It is almost a month to the day since my last bad headache day.

I am at an eight (utterly horrible) on my personal pain scale and working my way to excruciatingly unbearable, but hope to avoid the unimaginable unspeakable level.  It has been getting worse all day.  I am full of antinausea medication but still am nauseated.  I have had no pain meds today because I don't want The Headache to wake up completely and pain meds just annoy it. The leg pain is utterly awful. Hot needles are piercing the soles of my feet and in the joints of my feet.

My eyeballs hurt, my head hurts, my teeth hurt, my face hurts.   I am able to concentrate in little bits but I can't sit still very well as the hurting makes me want to move.  This is a major way that The Headache differs from my old migraines.  With a migraine I just wanted to go into a dark room and not move.  With The Headache as the pain increases I want to pace, move - do something!  If I don't get it stopped I will soon be at the head banging praying to God for it to quit stage.  The worst part of The Headache is that the praying to God for it to quit stage lasts for hours and hours and hours and hours.

Off to iceland to fill up my ice pack.  If that doesn't work I will try heat.  Hoping to avoid an emergency room.  Have tried to spell gauge about 15 different ways, a sure way to know the noggin is not in good shape!

Sunday, February 13, 2011

On Fire

Neuropathic Pain
 Have tried to rest and recover the last few days.  The pelvic and leg pain has been fairly bad.  I have been cutting up my dilaudid pills into smaller and smaller sections to see the minimum I can take with the least amount of side effects and will take the pain down to barely tolerable.  I had to give up and take it more often today (I figure the dose I am taking each time to be about 0.5 mg) as the pills have not been keeping up with the pain adequately. The lower dose of neurontin just does not seem to be doing much for the pain at all.  My lower legs feel like they are on fire this evening.

I am still having to use inhalers for my breathing problems.  I have trouble breathing if I walk too fast or go outside even in the warm spell we have had the last couple of days.   Still feeling short of breath, but will wait until Wednesday or Thursday to see if I need to go back to the doctor.  Hoping to get to work bright and early tomorrow morning.  I am soooo ready to get out and do something!

Hoping that the hives the dilaudid gives me won't get worse.  I am taking benedryl with the small doses I have been taking (I called the doctor's office first to make sure it was OK) but the itching and hiving continues.

I am having trouble sitting still which I know is from uncontrolled pain and compounded by the benedryl and the itching and the hiving.  Instead of shake rattle and roll it is fidget itch and hive.  Sigh.  Wished I looked so mellow and fine like in the song. 

Saturday, February 12, 2011

Low Dose Naltrexone

Wonder Drug? I Wonder. I Wish.

Naltrexone is an opioid antagonist used for treating addiction to alcohol and opiates.  The doses used for this type of treatment are around 50 mg once daily.  Reason would tell you that something that counteracts opiate pain medication would also be something that does not help pain.

There are some doctors now prescribing this in a very low dose to treat a variety of disorders (off label - meaning it is not the reason this drug has FDA approval).  The dose recommended is between 1.5 mg and  4.5 mg per day.  The website that touts this drug states that this must be compounded at a compounding pharmacy (where they build the pill from other components in the strength desired) and must be prescribed by a physician.  It seems to be fairly inexpensive and at that very low dose hopefully side effects would be minimal.

I learned of it through a discussion group I belong to.  One of the ladies who has a very destructive autoimmune disorder is giving low dose naltrexone (LDN) a try.  I don't know her success yet with it as I am not sure even how long she has been taking it - maybe just a few months.  I looked it up and read about it and am intrigued, though skeptical.

There are anecdotal claims and a few scientific studies that LDN can stop the progression of certain cancers, help with multiple sclerosis mood disorders and pain, help with fibromyalgia pain, stops the inflammation in Crohn's disease, and works to stop the immune response of autoimmune disorders.  Instead of working by suppressing the immune system (as prednisone, dexamethasone, prednisolone and cyclosporine do) it seems to work by boosting the immune system.

How does this work to decrease pain?  According to the authors of the website low dose naltrexone taken before bedtime produces "a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production."  Endorphins are the body's natural opiates - pain killers manufactured by your body.  Enkephalin is a specific type of endorphin that is sensitive to certain types of stimuli that might damage your body.  Enkephalin is also thought to be part of the cascade that creates an autoimmune response.

Since I rarely am asleep in the middle of the night, I can see how my body might be missing some nature endorphins and enkephalins.  Maybe this is what my PCP means when he says lack of sleep creates a build up that increases pain?

In treating cancer some think that in addition to increasing endorphin and enkephalin LDN targets the opioid receptors on certain types of cancers and thus somehow inhibits reproduction.  My interest in this is because the type of cancer I had (endometrial cancer) is hard to treat with a recurrence. I am keeping LDN as a treatment possibility in case my cancer ever decides to return.  I believe in using conventional treatments, but this would be an option you could take with the conventional treatment. 

Do I believe all the hype?  Not really.  The studies done are just for small cohorts under controlled conditions.  Most of the evidence is from patient stories and physician use which of course are not a controlled scientific blind study. The studies seem to all agree there is no harm from taking LDN and that if LDN is taken concurrently with opioids it seems to boost the opioid effect instead of suppressing it.  The one study on fibromyalgia said a significant gain of 30% reduction in pain was found.  I guess that is another disease where people are not able to have restful sleep!  I do find it hard to believe that one drug treats all these disparate diseases with the same mechanism, but that's the logical me talking!

Will I ever try it?  Definitely if my cancer returns (knock on wood!) because I won't have anything to lose. If my neuropathic pain and The Legs get worse or The Headache or The Belly pain are not controlled I might give it a whirl. I've tried a bunch of other stuff that didn't work so why not this?   Just more money down the drain!  After all, I bought HeadOn and applied it directly to my forehead - directly to my forehead - directly to my forehead - in a desperate attempt to quell The Headache!

Below find a link to a blog entry skeptical of most of the claims at the low dose naltrexone website.  Some points made agree with my conclusion that there are not enough real scientific studies to sort it out yet.

LDN - Medical Revolution or Psuedoscience?

Articles from peer reviewed journals concerning low dose naltrexone - most of these are for very small studies or a single case.

LDN and Pancreatic Cancer - a case study
DN and IL2 in Metastic Cancer Treatment
LDN and Crohn's Disease
LDN and Multiple Sclerosis 2010 (fairly lukewarm review)
LDN and untreatable solid tumors -2002- a study
LDN and fibromyalgia 2009 study (favorable)

Thursday, February 10, 2011

Lean on One Another

I Murder Hate
Robert Burns (1759–1796). Poems and Songs.

304. Song—I Murder hate

I MURDER hate by flood or field,
Tho’ glory’s name may screen us;
In wars at home I’ll spend my blood—
Life-giving wars of Venus.
The deities that I adore
Are social Peace and Plenty;
I’m better pleas’d to make one more,
Than be the death of twenty.
In illness, I only have energy in my life for what is important.  My family, my pets, my friends, my work, my internet family come first.   Sometimes my priorites get a little mixed up, but these are generally where my focus and my effort are given.

Hate filled rhetoric is something I don't listen to, I don't read it, I don't spend energy on it.  I find it deplorable, sad, and often the sign that an argument has no basis EXCEPT an emotional one.  Hate is a powerful emotion and conjures up fear, paranoia, anger and often gives the hater an adrenal rush - a physical high from the "fight or flight" response:
fight-or-flight response, response to an acute threat to survival that is marked by physical changes, including nervous and endocrine changes, that prepare a human or an animal to react or to retreat. The functions of this response were first described in the early 1900s by American neurologist and physiologist Walter Bradford Cannon.

When a threat is perceived, the sympathetic nerve fibres of the autonomic nervous system are activated. This leads to the release of certain hormones from the endocrine system. In physiological terms, a major action of these hormones is to initiate a rapid, generalized response. ( - Fight or Flight response, 2011)
These primitive responses to perceived threats or stress are born into all of us.  Hatemongers use these physiological signals to heighten our reactions to their speech and actions, whether in a negative or positive manner.  Some may not be aware that our hind brains and autonomic nervous systems are giving more credence to their thoughts than rationally they are worth, but I am sure that most of the higher profile "shouting heads" we see and hear spouting devisive and corrosive opinions in all types of media are very aware of what they are doing.  This goes for both liberal and conservative, religious and secular talk.  There are no artificial boundaries for people who use this type of manipulation.

It is a shame that those with the least ability to resist the illogic of the arguments are also those who are more vulnerable both to the emotional overtones and to the fear and the rush that fostering hate gives one. Shame on persons who know they are agitating the unstable among us with fear and hate. Shame on the networks and radio stations and political parties and celebrities that build their reputations climbing over the bones of victims while proclaiming innocence and no intent to incite. 

What can we do about stopping this deluge of malintent and misinformation?  For one thing, I refuse to give it credence. Arguing back, trying to convince these people they are wrong is just feeding into the "fight" response. Ignoring it entirely is not an option either. This has been done throughout human history and atrocities and genocide have been the result. Education with a forum like this (Love Beats Hate Blogging Event) is a start.  Analyzing what you are hearing or seeing, not responding on an emotional level helps.  Or we can all do as Robert Burns suggested almost three hundred years ago: concentrate on creating a peaceful society with plenty for all; instead of killing one another, love one another.

In 1972 Bill Withers wrote  "Lean on me when you are not strong... for it won't be long until I'm gonna need somebody to lean on".  These words ring as true in 2011 as they did then.  Let's lean on one another and not tear each other down.  Don't waste your energy on hate and negativity. I won't.

Wednesday, February 9, 2011

Bronchitis Breath

Feeling A Little Better

I am on day two of antibiotics and inhalers for bronchitis.  I still am having quite a bit of difficulty breathing and am extremely short of breath, but it is better than Monday.  I did not go into work today, spent most of my time just resting.  I get out of breath just walking across the room. It hurts to breathe but that could be The Belly in addition to bronchitis.

It snowed again today, but Saturday it is supposed to be up in the 50's so hoping everything will melt off permanently then.  We just don't have this much snow here as a rule.  The cold is making the bronchial spasms go crazy when I go outside.

The Legs hurt really bad today because I tried not to take pain medication again.  I finally gave up and took a tiny amount of dilaudid again tonight.  It did take the edge off the pain.  The hives started breaking out worse within fifteen minutes of taking the dilaudid.  I am afraid I am becoming sensitized to this, and because it is one of the few major pain killers they use for acute pancreatitis I fear getting that level of pain without being able to take it.  I don't know if there is anything left to prescribe that I can take. 

The Headache is not happy today either.  I fear that the pain medication is making it worse.  It is so frustrating because I treat one symptom and two more pop up. 

My friend called me that is on the respirator/trach. I was so surpised she could call.  She has another infection so is on antibiotics again but she had her speaking tube in and had a much stronger voice.  Bless her heart, she called me because she was concerned about my health, since she knew I had been sick and was not going to visit her until I knew I was over whatever I had.  Her abdominal wound is almost closed and she has been sitting up and standing with assistance.  The extensive decubitus on her backside was surgically debrided and is finally starting to heal.  She is feeling stronger but still cannot move her legs by herself or roll over in bed without assistance.  I was so happy to hear her voice!!

Tomorrow I will have a blog post to contribute to the "Love Beats Hate" blogging event.  Check out all the posts from bloggers all across the world.

Tuesday, February 8, 2011

Emergency Room Blues

Ready To Start Feeling Better

Went to work today.  I had been undermedicating The Legs because I wanted to be clear headed to talk to my boss about my inability to travel and my declining health and work.  I did take some "minor" pain medication this morning (trammadol) even though it makes me very very nauseous because I don't think I could have been able to take the pain of driving to work without it.

I got to work and got busy very quickly.  I trained the new guy on how to fix some things in the system, and with a few people on several projects, and spoke with the clients up in Michigan.  They are very nice people up that section of the country.  If it wasn't so durn cold I would be tempted to move there!  I made a mistake by hitting ENTER too soon and then was able to show the new guy "Look this is what happens when you aren't paying attention and this is how you fix it!"   I don't think database maintenance and pain killers are a good mix.  I suspect if I checked the information the pharmacy gives me with my meds it would be there under cautions:  "Use caution when operating machinery or when working with large groups of data".

I had a talk with my boss.  (Did I ever mention how much I love my job?  My bosses (three active and two retired) are a big part of that.) I explained about how I just am not able to travel anymore, and how I don't feel I am pulling my weight, or doing my part.  I stated that I am disappointed in myself and feel that because I cannot tell from day to day sometimes how I will be able to function I am letting the entire company down.

The Big Guy let me know that he thought that I was doing pretty well despite my misgivings.  He said that he would make sure I did not travel this year, and that it was time for the Junior Varsity team to step up to the big time with traveling.  I said I could travel if they absolutely needed me to, but that he would need to expect that I would miss work recovering from the trip after I got back.  He said, no I could stay back at the office, and just be available to them on site by phone.

I told him I could not say what the future holds with my declining health, and that I could not even say to any certainty what kind of schedule I could handle.  He said to just do what I can and that would be good enough for them, and he would let me know if it wasn't.  He said he was satisfied with my work even if I wasn't, and that I was always able to keep going at what he considered a great level of quality.  I guess I'm glad I'm not my own boss because I would be chewing my butt right now because I just feel like I'm struggling.  By the way, have I mentioned I love my job lately??  Well, I do!  And it seems like I will be keeping it for awhile longer...and I won't be traveling.  Big sigh of relief!

I guess all my worrying and doom and gloom was for naught.  I just have awful luck (as you can tell from all my health issues) so I was just certain that my ride was over at work.  I could not concieve being able to continue working at my reduced hours.  I just felt like I was not able to think and perform at the levels I am accustomed to.  I tried to lay it on the line warts and all and was told let's just take it as it comes and do my best, and that my best was generally much more than they expected.  That was so nice to hear because my morale really needed a boost.

All my coworkers were glad to see me too, even when I feel my abscences put much more pressure on them.  I don't want to work anywhere else - I want to be able to retire from here.  I was ready to do it today if my boss felt it was time. I'm glad I can hang around a little while longer  because there is always something new and challenging for me to do!

I worked seven hours today but didn't really feel well.  Driving home this evening I was still in town when I felt like I couldn't breathe.  I pulled over and tried to breathe slowly.  If felt like an asthma attack.  I had several cold induced asthma attacks in Michigan, and this felt like that also.  My PCP had thought that I may have had pneumonia with the flu a few weeks back but had gotten over it.  My chest and ribs hurt in addition to the pain I was already having with The Legs and The Belly and The Head.  I decided to go to the emergency room to make sure I didn't have pneumonia because the pain didn't seem to be decreasing.

Once you have had cancer every time you go to an emergency room they are going to run blood work and possibly x-rays.  Once you have chronic pancreatitis every time you go to an emergency room they are going to run blood work for elevated enzymes, especially if you are having abdominal/chest pain.  Giving a health history is time consuming and tiring.  I have noticed that the electronic medical records used by my in-network emergency room has eliminated some of the repetition. 

I got an IV set installed, although I did not receive an IV.  The nurse listened to me after the first dry hole and used a pediatric set in my wrist and it went in the first try!  Then she did a trick I had not seen before to get the four vials of blood for the labs ordered.  She pulled the tops off the vacutainer tubes (what they put the blood in) and took the end off the IV lock and then let the blood pour out of the unrestricted IV site.  Mine didn't really pour out but she was able to get three vials, and then used a syringe to suck the rest out for the fourth vial.  She said you need to twirl the vacutainer as you spill the blood into it since vacutainer tubes are coated with an anticoagulent on the inside.  She said she worked with babies and this is how you had to do it with them if their veins were too tiny.

I wasn in more pain than I realized. The Legs were especially bad at the jumping can't keep still stage.  My blood pressure was 168/96 when I arrived and soon climbed to 208/102.    This makes the automated blood pressure cuff monitor alarm start beeping.  It beeped for almost three hours! That caused The Headache pain to increase and the position I was on the ER bed made The Belly pain worse.  Augh!  Finally the pain overload I was experiencing started to decline and by the time I left at midnight my BP was back down to 170/86.  The doctor offered me pain medication and I told him that I had plenty of pain medication at home but it doesn't work if you don't take it.  He said maybe I should review my pain management strategy as my blood pressure was proof that not medicating was a bad idea.

The end result of a nuclear lung scan, blood tests, and a chest XRay was a diagnosis of bronchial spasms and a bronchial infection.  I came away with scripts for new inhaler medication and antibiotics.  I am sure this will help me breathe and feel more energetic.  I had a borderline high test called D-dimer which is why I had the nuclear lung scan to make certain I did not have a pulmonary embolism.

I made it home, and I did take some dilaudid in addition to my regular evening meds.  I am now tired, but in less pain.  I think I am going to bed soon.  Hope you all have a great day today!

Sunday, February 6, 2011

Shark Bait

Swallowed Whole

I am icky and yucky and erpy tonight kinda like the bait they use when fishing for sharks. The Belly is giving me fits, and I am broken out in hives in several places tonight.  The Legs are dancing, and The Headache has me wandering around in brain fog.  I am trying to cut back on medication for The Legs so I can actually get to work on Monday to talk things over with my bosses so The Legs are very very VERY unhappy tonight.  That  might have to do with everything else feeling worse too.  It is hard to tell when everything is just a mixed up mess of chum.

My health problems are like a great white shark, and my future is being protected by a little fishing boat. I can just hear that Jaws theme getting faster and faster as the shark comes after my sorry slow shark bait rear.

I think I need a bigger boat.  Sigh.

Saturday, February 5, 2011


Conversation Started

I let one of my bosses know how disappointed I am in my current ability to work and contribute.  I said I committed myself to seeing the business through the stream of installations and conversions last year, I am just very unsure how I can do that again this year.   I am not sure yet what I am going to decide, but I know that The Legs are my major obstacle right now.

I hope to talk with them next week, and see what they want to do and let them know what my limits are and if that is still acceptable for them for work.  I have thoroughly enjoyed my work with them.  I love their company, I love what I do - or rather did since I have cut back this fall.  I believe in their vision and feel that it is just going to take a little tip forward and things are going to take off even better than last year, which was a very good year for them for new business.  If my bosses think that we need to make a parting of the ways I will be sad, but they have been more than fair to me. 

I just can't in good conscious continue to be so unreliable and so illness prone as an employee.  I have ended up ill or unable to walk after the last two trips and have missed a couple of weeks of work each time.  I ended up in the hospital last summer probably as a cumulation of not taking care of The Belly properly while doing installs.  Not only do I feel bad about missing work, but it costs me money and it costs my employers money especially with insurance premiums and for lost man hours.  I hate that I have just gone from one illness to another the last few years; I had gotten a clean bill of health before I started this job nine years ago.

Incapacitated by this or that during the last seven years I have been injured financially also.  Co-pays, deductibles, out of network deductibles, travel to specialists, medication costs, missed wages have worked together to ruin whatever little credit I had.  I am lucky because my home has no mortgage, but even paying real estate taxes has been a struggle.   Not only do I have my own financial medical issues, I have my mother's also, and have been helping my brother pay for his prescriptions. 

I am terribly whiney tonight.  The lower dose of neurontin is not helping The Legs very much, and I am reluctant to keep supplementing with pain meds.   Feeling tired and woozy, think I will sign off and go to sleep!

Friday, February 4, 2011

Fighting The Inevitable

Time to Throw In The Towel?

In boxing, throwing in the towel means you give up, you've been whupped, you are not able to continue, you concede the fight.  I feel I am almost at that point. I get to this place just to revive myself and fight onward for another round or two.

I am so fatigued right now I fall asleep sitting up and it is scary to drive.  I am in enough pain from so many sources that I am almost willing to give up what little coherent thought I have left for adequate pain relief.  I can't digest food.  My incontinence issues are not improving. My ability to walk continues it's worsening path.  I want to quit trying to keep my forward momentum going.

This is probably just late night pain talking. I had a reality check today that started me down this path again.  The roads are still ice and snow covered around here.  I decided to go to work this morning waiting until noon so the roads would be at their optimal cleared levels for the day.  I only made it 15 miles, and then exited the interstate and headed back home.  I used to love driving, no matter the conditions.  Today the pain levels from driving were too much and my concentration and reflexes were too poor for the road conditions.  I feel like a dunce, a failure, a wuss. 

Where is the old Winny who would let neither rain nor snow nor dark of night stay her from her appointed work hours?  My poor health has drained my energy, stamina and strength for the last seven years.  I think it has drained my determination too.  Tonight I am debating what I should do.  I have been trying to delay any drastic decisions until I see Dr. House in April.  I just am not sure if I should wait.  I wonder if it is fair to my employer and my fellow co-workers and my company's clients, if it is fair to myself, to keep trying.  I love my job, I love my work but I don't even have the brain power to think right now to be effective.

I'm going to have to give myself an old fashioned pep talk.  I think I need Burgess Meredith from Rocky to tell me to "eat lightning and crap thunder".  On second thought, for someone with incontinence issues this may not be such a good idea....but I guess it would make me a "very dangerous" person!

Wednesday, February 2, 2011

Snow Storm

Blizzard Conditions

Having a bit of snow today.  I live in southwest Missouri.  Our major weather problems are tornados and ice storms.  We really don't know what to do with snow.  People who live or grew up in more nothern areas (as I did) can find it hard to understand that everything here comes to standstill with TWO inces of snow, so when we have 18 inches of snow in one day it is major league chaos.

I did not try to go to work.  Have had some issues with the internet today and phones (I am on a DSL) going down and back up, so I didn't even try to work via the internet.  Everything seemed closed today including the interstate I use to drive to work.  Apparently Oklahoma closed the interstate going westward, then the traffic started backing up into blizzard territory in Missouri, so the Highway Patrol closed the westward bound I-44 lanes from Springfield Missouri to the Oklahoma line.  Since that would have been my homeward route I am super glad I did not try to go to work.

I have a personal way of know when to not drive around here.  Three cars or trucks off the road and I pull off and wait or turn around and go back home.  That many vehicles off the road mean that people are driving in conditions they are not prepared or experienced in driving in, and I don't want to be on the road with them either. My understanding is that there were trucks and cars sliding off everywhere.  Sigh.

A nice neighbor cleaned our road and my driveway after dark this evening but I am pretty sure it will be drifted right back by morning.  Of course it should be melted in a day or two but those will be a miserable couple of days.  My outside dog is in her insulated dog house and we have her heater going full blast.  The cat asked to go outside and we saw him sneaking inside the dog house too!  I guess Bingo will have a full house!  I wish she would come inside or go in the garage but she won't stay in a building with the doors shut.  Her house should be very warm and kitty cat will make it even warmer!!!

My dachshund is very sad about the snow as his legs are not very long and he can only navigate where we have scooped the snow away.  He definitely does not like snow or cold or ice.

I am now on a lower dose of neurontin.  I was supposed to get the prescription Monday but I came home from my PCP to wait on the perscription and fell asleep sitting up in a chair.  I woke up around 6 PM - I had somehow during the day wandered over to the couch and knocked out there.  Don't remember anything other than sitting down in the chair.  Guess I'm still not over the flu.  Didn't get the prescription today because of the blizzard. 

I am taking 300 mg of neurontin now because that is what I have on hand, but the script is for 400 mg so maybe that will help the pain a little more. The 300 mg dose is not doing much.  My PCP said I will have to balance my tolerance for side effects against pain relief.  I said I really wanted to double the neurontin, but the diarrhea is just not workable as I am getting dehydrated.  So less neurontin, more pain, less diarrhea, less dehydration.

Going to bed soon, The Legs are not happy at all.  Not sure if I will be able to sleep.  To tell you the hard truth, some nights I simply lay curled up in a ball and cry when the pain gets too bad, especially the pelvic pain.  Why pain gets worse at night I don't know.  I suspect it is because there is less to distract me.  I will have to practice my deceptive distracting ninja skills in order to perfect this as a pain relief strategy.  If only I had a grappling hook, because my nephew in Florida told me that if he had a grappling hook he could become a ninja.  I think I could too, at least a ninja of distraction, or at least grappling WITH distraction!!