Tuesday, January 31, 2012


2012 Not Starting Well

I haven't been posting - too sick or too hurt or too stressed or working too many hours that I shouldn't.  Members of my extended family have been ill, or have found out bad health news, or are just stressed too.  Hoping that their conditions will work out for the best, if mine worsens so be it.

I went to the A-Team (my headache specialist and the headache clinic) this month and they were as kind as always and had some more options for me to try. Every time I go in, my doctor takes the time to review my case and research to see if any new studies have been published before my appointment.  You would think all doctors do this, but in my recent experience I have found it a rarity, so I am pleased that Dr. Hannibal Smith and his team do this consistently.  He also wrote a letter for me to have with me when I do have to go to emergency rooms that gives some basic guidelines to the ER docs on how to treat my hemicrania continua during an extreme pain flair.  He also gave me some literature on HC to go with the letter.  I am hoping this will help both me and the ER docs.  There are so few hemicrania continua patients that the ER docs and nurses treat it as a migraine because that is the headache condition they see most often.

I fell really really hard last Friday down some stairs while I was mopping the floor.  Missed work, and my sister was kind enough to take me to the ER to be checked out.  My lower lip and chin are still numb from the fall - how I hit this I don't know but I broke several of my front teeth and knocked part of a filling and crumbled the side of a tooth in the back.  The docs thought I might have a mild concussion also - I threw up several times during the night while I waited to see if I should go to the ER.  I knocked ribs out of place and was able to crank those puppies back where they should be while I was still numb from hitting the floor.  I have a problem with my ribs going out dating back about 20 years to a fall on the ice.  I think once you injure yourself bad enough the old injury keeps popping up when you try new acrobatic tricks when falling.  I must be made of rubber and bounced pretty well since no bones were broken.

The pain from the fall has been really bad.  I don't seem to be bruised badly - there are a couple of spots that show bruises - but the pain seems to be coming from the pelvic region and my right hip and leg.  My incontinence issues have gotten worse yet again, perhaps from bruising the nerves?  I am going to have to start using protection at night if it doesn't clear up soon, as it is happening in my sleep since my fall.  My teeth hurt but I have a dentist appointment Friday to see what is going on there.  Maybe my major medical will cover part of the repairs - that would be a big WooHoo!!!

I see my PCP this morning to see what if anything can be done with the increased pain and incontinence.  Maybe it will calm down after a week or so.  I seem to only have the sensation of pain, and am not aware that I am having incontinent episodes.  I will just have to move forward and hope that this latest set back goes away after my body gets over the shock of the flying leap and the splatted landing.  Note to self - do not fall with a three gallon bucket full of dirty mop water again!!!  Not only did it through me off balance I had to lay there in that mess and then clean it up and finish mopping.  My feet are so numb I am not sure what made me fall - I suspect mop water sloshed out and I stepped in it.

I plan to go into work today after going to the PCP.   Not sure how I will be doing, but I need to make the effort, because it is not work's fault I am a clumsy oaf!  I also have an appointment Thursday with my urologist to see if I need to continue the intermittent catheterization.  I had a very bad UTI since starting the self-cathing but  this could have been from fecal incontinence or not being careful enough with the catheters.  Makes me cringe to think about it.

I am somewhat drugged - the pain has been horrid in my back and in my abdomen.  For some reason my liver and kidney hurts on the right side and my spleen on the left are terribly sore.  Just what I need, another part/piece deciding it doesn't like me and leading a revolt of the innards!!!  Maybe you can bruise your insides as well as the outside - maybe that's why the ER docs gave me literature on deep contusions??

I hope this post makes sense, as my mind hurts.  I'm going to have to retire from the circus and stop the acrobatic stunts while mopping.  This is the second time I have fallen at the same spot on the same stairs while mopping.  Maybe the root cause is mopping the floor.  Sounds good - I can quit mopping and won't every fall again!  When I win the lottery I can hire maid service to come in and mop and fall for me.  sigh.

Sunday, January 8, 2012

Medication Vacation

Chronic Pain Bites

Every once in a while I take a "medication vacation".  I don't quit taking anything that would endanger my well being or vital functions, but I discontinue my pain medicaiton and any other extraneous meds that might be messing with my metabolism.  I wait it out as long as I can, and then start again.

This isn't the wisest choice.  Tonight I found myself after approximately 36 hours without pain meds in a heap o' pain.  I had some withdrawal symptoms the first day, which lets me know that I am physically dependent on the medicaiton.  The pain, which I do not medicate to the level my physicians want me to, came back stronger and stronger and stronger the longer I was off the pain medication. I always have this bizarre hope that the meds will wear off and the pain will be magically gone.  This is not based on any fact or any basis of reality. 

The medication vacation helps me realize how much pain I am actually in, and why I take the medication I do.  With chronic pain I think you loose perspective on how much pain you are experiencing.  After all, what is the difference between excruciating and untolerable?  It is a very fine line that gets very blurred.  I fear I will think I am in pain just to continue getting pain medications, I fear that my pain might be imaginary, I hope it has disappeared and fear it has not.  When I cannot discern how intense the pain is or how overwhelmed I am because of it I try to see what life is like without the medication.  It also helps my gastroparesis and my digestive system perks up for a few hours, which is the best part of stopping pain meds.

I thought my pelvic pain has increased since the cathertization marathon began but I wasn't sure.  I thought that my nausea has been getting worse but I wasn't sure.  I thought that the neuropathy and leg cramping has increased but I wasn't sure.  I am now.

Intense pain wears me out and I haven't been sleeping well the last week.  I'm not sleeping well tonight either - why I am up writing this I guess.  I caved at about 2 AM and took some medication and will put my pain medication patches on in a short while.  Some medication was left in my system as 36 hours was not enough to clear everything out so at least that gave me a bit of a jump start from my own idiocy.  I lasted longer than the previous medication vacation I took in October - only 24 hours that time.

I knew I had to start the meds back up again when I woke up from a short nap with tears running down my face on on my pillow, and I was clutching my stomach and (gasp) my pelvic region from the pain.  It is hard to describe because you can't point to a certain spot and say - THAT is what is causing the pain.  It is general and it is specific to certain nerve groups all at the same time.  It is enternal and external.

The Headache is not liking me tonight.  Seeing as The Legs and The Belly were already in revolt, not amazed The Headache decided to flare up too.  It's not too bad, so hoping I can get everything controlled before The Headache gets too riled up.

I have work to do this weekend.  I had not really planned on but that is what I get for taking two days off last week, two extra days this weekend.  Not really complaining, just very hard to concentrate.  Not sure if I should keep trying.  It gets harder and harder to work a 40 hour week, and lately just 40 hour weeks have been few and far between.  Even thought I have tried very hard to communicate what I am going through, I am sure people at work are thinking about all the deadlines we have to meet and what needs to get done - not realizing that if I am not well enough to drive, I am also hard pressed to sit or stand or do anything that requires concentration.  I don't think I can do this job anymore.  I want to keep going very badly (or is that very badly want to keep going??  I don't want to keep going if I have to do it BADLY!!)

ALL of my doctors have told me this fall to hang up my hat and go on disability.  Easier said than done.  Financially I don't know how I will be able to do it.  I thought my new employers had long term disability only to find out in December that although they had paperwork we signed that said we had long term disability we were supposed to read between the lines and realize it was not offered.  ARGH!  Well, they probably would have had a preexisting clause in it like they do in their short term disability,  so I would not have any coverage anyway.  sigh.  My health insurance is excellent, but if I go on Cobra (and we are big enough now they have to offer it) I don't know how I will be able to afford it.  I also don't know how I will be able to afford pain medication without insurance.  Another reason for the medication vacation - am I paying for something I really don't need??   Bigger sigh.

Going to drag out my fentanyl patches (I can't find my Tegaderm patches to put on top of them - where o where have they gone - two BOXES of them) and slap them on and try to sleep a little while.  Then up and at work again.  Ah well, at least its a diversion!!!

Wishing I had a Fast Car to Get Myself Outta Here...My body's too old for working....but I know Things will get better...

Thursday, January 5, 2012


Toooooo Tired

Feeling more than a little bit overwhelmed today.  The Belly is not cooperating - probably because of the drive Tuesday to St. Louis and back.  I am exhausted by that little bit of effort - I'm such a weanie.  Pain is through the roof and medication only helps reduce it couple of notches. Dreading tomorrow,or is that today??

Ah well, To Infinity and BEYOND! Can and will move forward! Standing still, while tempting, is not an option and my reverse gear seems to be stripped.

Wednesday, January 4, 2012

Dr. Bellyfixer Scores 100%

Better Buy Stock In Miralax

Back at home after driving to St. Louis and back (five hours going and five hours coming back) to see Dr. Bellyfixer.  Experiencing lots and lots and lots of pain this evening.  So glad I took both Tuesday and Wednesday off because I have taken my breakthrough pain medication (dilaudid) and it doesn't seem to be doing anything.  I probably could take more of it, but I think I will make a supreme effort not to, and see if I can just suck it up and bear with it.

I didn't take my neurontin Monday night or Tuesday morning because it makes me sleepy.  I also took some OTC anti inflammatory but they didn't help much. Tried to stay alert, but had to pull over numerous times for 15 minute naps.  I hate to drive long distances anymore because of this.

Dr. Bellyfixer and his fellow specialist in training Dr. Bowels were very helpful.  I have so many things wrong with me they let me pick what problem I wanted to tackle first so I chose abdominal pain caused by bacterial overgrowth of the small bowel for priority #1.  They were able to come up with a new strategy without adding any additional medications so I was thrilled.

Because I am now having electrolyte depletion and leg and foot cramping Dr. Bellyfixer wants me to start using Gatorade each day.  I am to add a couple of capfuls of Miralax to the Gatorade.  Dr. Bellyfixer hopes this will control the fecal incontinence a little better.  Once every three to four weeks I am to purge my system top to bottom using Miralax - something like half a bottle with 32 oz. of Gatorade.  Dr. Bowels said that I cannot overdose on Miralax and Dr. Bellyfixer agreed with her.  He said Miralax is a large molecule preparation that causes the bowel to excrete fluids.   Dr. Bellyfixer's nurse said don't go far from the bathroom on the days scheduled for purging.  They said they have one patient that has to take 12x the recommended dose. Not tasty.

I will be consuming mass quantities of Miralax and Gatorade, neither of which are covered by my insurance.  If buying these sends me to the poorhouse, I'll have to make sure it has a poop-house attached! 

Dr. Bellyfixer asked if I would participate in a study on persons with bowel motility issues, like irritable bowel syndrome or Crohn's disease.  I was happy to!  They took some blood for DNA testing and some other blood tests and I have two or three information booklets to fill out and mail back. Not a big deal and I don't have to write a diary or anything like I had to for the occipital stimulator study, and it's a one time effort.  Hoping it helps other people, as my issues are more bio-mechanical than genetic.

I have a March appointment to go back to Dr. Bellyfixer.  I will have made progress on getting my bowels straightened out by then (a bowel joke as my bowels are kinda kinky = HA!) and maybe will be able to pick another issue to tackle. 

I hope that this post makes sense - the dilaudid and the phenergan are making me "drift" so I keep snapping back to the post and then zoning again.  Wish they did a bit more for the pain.

Monday, January 2, 2012

The Power of The Subconscious

Suggestion or Inspiration?

I decided today that one of my resolutions for the New Year was to learn to knit socks.  When I was young I was taught to knit by my mother and a pair of house slippers was the first project I was taught to knit, a very simple first project.  I learned soon to knit "in the round" using four needles and then moved up to hats and mittens, graduating to gloves with five fingers.  I have made afghans and scarves but really haven't knitted for years except for a disastrous doggie sweater I made for my dachshund Augie.  It might have looked OK if he was a foot longer, had a large hump in the middle of his shoulders and a couple of extra legs and if his throat had been as big around as his butt.  Otherwise, it was a really good fit.

I started wondering this evening why I had a sudden urge to knit.  Why was this dwelling on my mind? Then it dawned on me.  CATHETERS!  The intermittent catheters I am using sorta generally remind you of a knitting needle.  Duh.  I'm handling them over and over and over and over, and I guess it has been tickling at the back of my brain.  Now that I have already gone and bought the yarn and new needles and downloaded some new patterns I have figured it out.  Probably should have saved myself the trouble - I thought I was being inspired, instead I was being nagged.   Sigh.

Since I have some new wonderfully crazy yarn I think I am going to have to knit some socks.  I know myself tho.  Probably this resolution is going to go into the box with all my other unfinished resolutions. I will hit myself over the head later and say "Why did you ever start this??" - at least this time I have figured out the why!

I am on my way to St. Louis tomorrow to see Dr. Bellyfixer.  With gastroparesis I have to take "Miralax" every week in order to make everything move through my system.  Some weeks it is very hard to make things move.  Such is my dilemma tonight.  Watch - I will be three hours into a five hour drive and the Miralax Miracle will decide to happen between rest stops. I guess I'll take extra clothes.  Gosh, I feel like Charlie Brown  - I just can't seem to win. Drat or as Snoopy would say "Bleah."  Thinking of Snoopy maybe I will go dancing in my mind with Snoopy and the bunnies; beagles are Always Happy and Joyous (at least our family beagle Max was).  Wandering down memory lane a little too much lately I think, but its such a lovely lane!