Happy New Year 2011

Thinking Happy Puppy Kitty Thoughts

Listening to New Year broadcasts on television, thinking happy puppy and kitten thoughts with rainbows and sparkles.  I'm sure I am now too old, because I am thinking with fondness of Guy Lombardo and His Royal Candians playing Auld Lang Syne. Sigh.

Spent part of my day with my friend who is very sick in the hospital - well actually an LTAC - long term acute care.  She is on a trach and can't speak but we put on silly hats and I told her to toe tap Auld Lang Syne as part of her physical therapy.  Pancreatitis is a serious disease and can cause organ failure and worse - she has been on a ventilator/respirator for two months.  It takes a while to get weaned off the equipment after being on it so long.  Praying that she is close to getting on the fast track to healing.  I am spelling her daughter this weekend, since her other daughter could not make it.  Makes my problems fade into nothingness when I am around someone who is so profoundly ill. 

Neurontin Day 3

Some of the side effects of the neurontin are fading today, hopefully my body is getting adjusted to the medication.  Unfortunately the ONE side effect I was sorta counting on was excessive sleepiness. That one just doesn't seem to be evident.  Rats!!!

My eyes are not so flippy after taking the neurontin but they have been sorta flippy all day.  By flippy they seem to take off on their own for a microsecond and I have to bring them back to attention.  I am hoping this will fade by the end of the weekend.

The worst of my pain is not being changed by this medication, but it has altered a lot of the low level burning and skin pain I have been experiencing, especially in my feet.  Maybe Dr. Kildare will have some other magic that can be thrown my way to reduce my overall pain levels further.  Maybe pigs will fly.  [Winny - behave yourself!!!]  I guess maybe I need to be more optimistic but it's not very easy tonight.

I think doctors must get complaints about pain a lot.  They seem to discount what people say about their pain, assuming they must be exaggerating or that they don't report pain properly.  If I am complaining of pain to a doctor it is because it is way past my ability to cope or handle.  It may be a personal prejudice, but I also think doctors pay more attention if a man complains of pain than if a woman complains of pain.

Have a safe and happy New Year's Eve and New Year's Day!!  Hoping for a fantastic and wonderful 2011!

Working Towards Better Attitude

Neurontin Day 2

Galatians 5:11
...the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness
Bible, New International Version (©1984)

Trying today to focus on positive aspects of my life.  I need to reach down deep and start moving forward again.  I really feel like I am on a treadmill - running and running but getting nowhere fast.  I have the scripture above hanging on the wall of my office where I can glance at it throughout the day.  I remind myself that I need to be patient and kind, steadfast and faithful in my dealings with customers and with my coworkers and family. 

Day 2 Neurontin

The leg pain has been flucutaing throughout the day, sometimes not bad, sometimes horrendous.  I have had to do the dance of pain several times today.  The pelvic pain is a little improved, but remains excruciatingly present.  The neurontin has increased the diarrhea and nausea is constant.  I am dizzy and having trouble focusing my eyes.  The burning is almost gone in my feet, but the sharp stabbing pains persist.  I am having new pain in The Belly and pray it is not pancreatitis again.  I am sleepy but I can't fall asleep.

Having hives again this evening, not as bad as yesterday.  Am going to bed in a few minutes. I feel really brain damaged this evening, suspect it is the medication, so I hope what I have written is comprehensable. I will try to sleep it off tonight   Hoping you all have pain free days and restful nights.

Neurontin for Nerve Pain

New Try for Old Med

Saw my PCP today and agreed to try taking neurontin again for The Legs.  This will be my third try with neurontin, the first two were flops.  Instead of titrating up, he wants me to start at 300 mg or 600 mg at bedtime.  The second time I tried neurontin it made me excessively sleepy, but not so tonight.  I had a few moments of sleepiness, but other than feeling tired (which I should - I've had about three hours sleep in as many days) I am not too sleepy.

I could not take Lyrica (for me a Dr. Jekyll and Mr. Hyde type of drug) but neurontin (gabapentin) is the precursor for Lyrica and can be used for nerve pain.  I took 300 mg at 7:30 and waited until 9:00 to take the second 300 mg.  I am very very very nauseous.  I will take some phenergan soon if I can keep it down.

Neurontin so far has taken away most of the burning pain in The Legs and almost all of the pain from touch.  The pelvic pain is still bad, but about an hour after the second dose I quit having the leg jitters from pain.  I was actually able to get up and push a swiffer mop around the kitchen without a lot of pain, which is the best it has been in months and months.

I am noticing my left eye is turning in - which it does when The Headache is bad.  The first 300 mg did rile up The Headache but I turned up the amps on my occipital stimulator and have been able to buzz it down a notch or two.   The Headache is not really happy, and I want to always keep The Headache happy and asleep!

I did not expect neurontin to effect my digestion, but it seems to have increased my intestinal motility - which is not a good thing for me, as I process food too quickly anyway.  The first 300 mg took a tiny bit of edge off the pain but I still was having severe pain in my legs and pelvic region.  The second 300 mg really worked better for the pain, but that is when the nausea started. Now three and a half hours from the first dose and two hours from the second dose my eyes are acting really funky like they can't stay looking at something very long.  I keep having to blink and redirect the eyes.  Hoping this is just temporary and will wear off.  The pelvic pain is still there, a little less than it was which is a blessing.  I don't feel very coordinated and feel a little short of breath.  Hoping this is temporary also.  I really need a pain solution that does not include narcotics.  The Headache and The Belly absolutely refuse to cooperate with narcotics.

I saw my immunologist Dr. Calm today.  I am off the cyclosporin.  Yeah!! He told me that my hives may not be connected to the mammalian meat allergy.  Bummer.  I asked him if anaphylaxis from the mammalian meat allergy could cause pancreatitis.  The first acute pancreatitis attack I had was about six hours after I ate two or three Slim Jims for lunch because I was running errands on my lunch hour.

I have a definite appointment with Dr. Kildare on Wednesday Jan 5th at 1:00.   My PCP said Dr. Kildare did call and talk with him about pain treatment options, which is the "why" for the neurontin.  At this point, I don't care what I take, as long as it works.

I feel right now like my lips are swelling and my nose is swelling and having a bit of trouble with wheezing.  Good heavens, I surely can't be allergic to neurontin.  My eyelids are itching, and my ears feel hot.  Better sign off, and take some antihistamines.  Maybe I ate something or took something OTHER than the neurontin to do this?? I did have some real butter with my low fat meal this evening. Arrrrrgh. And now The Headache is starting to spike forward through my brain from the back and come out above my left ear.

Can you run away from your body???  Wish I could!!!  Gonna antihistamine up and hope it helps!!

Calling Dr. Kildare

I'll Be Hornswoggled

Called and left a message with Dr. Kildare's nurse today.  I have an appointment tomorrow to talk to my PCP concerning effective pain management, as Dr. Kildare's nurse had told me that was who needed to manage my pain for The Legs, especially since Dr. Kildare was still reviewing my records.  I said that I had an appointment to discuss pain management and I would appreciate it if Dr. Kildare had anything he could let my PCP know that would help us make adequate plans.  I left my name, my phone number, and my PCP's name and phone number (which Dr. Kildare surely had since my PCP had referred me to him).  I didn't really expect that Dr. Kildare would have anything to add to the discussion, but thought I should give him a chance because his lack of response was going to be part of my conversation with my PCP.

When I got home this evening there was a message from Dr. Kildare's nurse on my answering machine.  I am to call back and make an appointment for January 5th with their scheduler to see Dr. Kildare.  Whether or not he has a plan is still a question in my mind.  I fully expect to arrive and get grilled again about my plethora of problems without any reference to my medical records.  I hope I will be disappointed, and he will have done his homework.  I need to get some kind of plan going so I know what actions I can take to get better, if that is possible.  I dread starting all over again one more time. 

I guess I should be glad I have an appointment before the end of March 2011.  Just wondering why wasn't this appointment scheduled when I was there?  Return in 3 wks....not too hard to write, not difficult to comprehend.  I know, blame it on the computer!  That is like saying the dog ate your homework, a disappointing lack of originality.

I wrote an email to a dear friend this week about a mutual friend who is very ill.  He told me not to "isolate yourself from those who love you".  I had to take a hard look at myself.  I am isolating myself.  I limit my contacts with old friends because I don't like to worry them.  As you can tell from this blog, I worry enough about me that they don't need to!!!  Everyone has enough burdens to bear, I don't want to add mine to thier loads.  I told him I will make reconnecting with friends my number one resolution and priority next year.

Tomorrow (or rather today since it is now early AM) I am seeing Dr. Calm the immunologist, and my PCP. The Legs are dancing tonight because it hurts too bad to hold them still.  The Headache is OK, and The Belly is behaving for now. Just hurting a little too much to sleep.  sigh.  But life is still sweet and the sky will be blue in the morning and the moon sits like a pearl in the oyster of the milky way at night and somehow someway I will continue to see the day through.

Clowntastically Ready for Next Week

Ready for the Big Top

Had a great Christmas over at my sister's house Saturday. She cooked a low fat non-mammalian meat meal where I was able to eat ever single dish that was offered without pain or fear of hospitalization....and tasty to boot! Thank heavens for cooking challenged me, she is going to write exact how-to recipes so I can duplicate some of the dishes. I am not a person who can cook with a pinch of that and a touch of this. I need measurements, and exact steps.

I got some automated clown toys for Christmas. When asked what I wanted for Christmas a few months ago I stated I wanted Clown Happiness. Somehow anything with a clown on it makes me happy and goofy!! I am always a little goofy but viewing clowns always boosts my happiness levels.

I have a balancing clown on my desk at work that I mess with when I need to think and cruelly balancing the clown on his nose for hours makes me a happy camper. Now I have a clown that shakes his maracas, and one with crossed out eyes in the shape of x's that rides a unicycle. I may be starting my own little clown farm.

Yesterday The Headache took on a new dimension - pain in the left side of my face that was worse when I was chewing or swallowing. I had about four hours of misery from this, with bolts of nerve pain shooting across my face from the region of my left ear. It left as quickly as it came. I have "jabs and jolts" type of ice pick pain, but this was a new one. I am a little bit fearful that I may be getting some inflammation of my trigeminal nerve. Argh!!!!

Dr. Kildare's and Nurse Goodguy's nurse left me a message Friday.  I do not have low vitamin E or copper concentrations in my blood.  This rules out any metabolic cause they have come up with so far.  Still waiting for communication on what my future treatment plan for my legs looks like.  Hmmmm.  Wonder if they have looked at my records at all yet.  Likely not.

I will get with my PCP in the next couple of weeks to see what I need to do painwise and otherwise for The Legs.  I think Dr. Kildare is out chasing other rabbits and has lost track of mine.  Ah well, back to the drawing board!  Wishing I could have kept dear Dr. Welby - he sounded intelligent.  Sigh.

Very tired. I have not been taking medication for pain this last week or weekend so I can be higher functioning. Not good for me sleep wise. I will try and sleep well tonight so I can get up and go to work tomorrow.  I'm ready to take off in my clown car and get down to business..