Malfunctioning Legs

Need That Bongo Sound Effect

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!!! 

Princess of All Things Pancreatic

Pain Pain Go Away Come Again Another Day

I have tried to work the last two days - was able to do 8 hours plus Thursday, but only did around four hours Friday.  I have some work to do this weekend which should more than make up time - I am trying like heck to do eight or more hours a day.  I tried to eat today, and while I am not as shakey the pain has been somewhat overwhelming. 

The oxycontin tablets (10 mg 2x dly) are helping to take the edge off the pain, but I have what I call pancreatic spasms which this dosage just doesn't touch.  I guess I will cut off eating for another couple of days and then see how the pain is when I try to eat again.  At least I have enough pain the oxy is not making me woozey or drugged feeling.  I am delaying the morning dose until I come home from work, then if able I take the second dose around one or two in the morning.  Don't seem to have much luck getting to sleep so that is OK.

On the up side I did get a lot of work done the last couple of days.  I won't have to travel for work until the second week of August which is a big relief for me.  I am hoping the pain will be much less by then.  I may have to break down and go see Dr. Gnome, but just not looking forward to the trip.

My kingdom has shrunken down to what The Belly commands.  The pancreas speaks and I come to attention.  Having trouble sleeping because of pain and also because the pancreas hurts less when I sleep sitting up - a hard trick to do without a hospital bed.  Right now the pain is pretty much on the severe side - I am hoping that it subsides soon.  Maybe the sitting up part is why I have gotten so much done at work the last couple of days.  Feels better than reclining!

I have an appointment with Dr. SassyPants on Monday.  I do hope I don't have to put on the huge pair of paper shorts again.  With all the pancreatic pain going on, I may put my pursuit of leg pain fixes on a back burner for a while.  I am sick enough I don't want to be poked, prodded or exercised at the moment.  I am even thinking of postponing my Cleveland visit for the end of my trial.  Not sure if I can abide the travel.

Going to try to go to sleep soon.  My petunias are blooming, my tomatoes are ripening, and the weekend beckons - needing a good pick me up, so maybe gardening this weekend will do the trick!  I am becoming obsessed with the belly pain and I need to actively distract my mind.  My weekend work project should help also.  Behave Body!!!  Depose the malicious pancreas cartel and get back to normal (as normal as I ever am!).

Doctor SassyPants

We Have a Plan

Saw a new doctor today, the physiologist.  I'm gonna nickname him Dr. SassyPants, because he's the cheerful joking kind of doc that gets down to brass tacks quickly but keeps it light.  Doc SassyPants quickly decided that I didn't have facet joint arthritis problems, and a facet joint injection wouldn't help.  Then I had to do some tricks like walk on my heels, tippy toe forward, and walk flat footed, all the while worrying that my paper exam shorts were going to fall around my ankles and trip me!  Thank God I had on my granny underwear for modesty's sake.

For the exam (I guess because it's of the lower spine) they had me put on a pair of paper shorts that must have been made for Humpty Dumpty.  They were so wide they wouldn't stay up, and so short in the seat that I couldn't get them pulled up to a decent height and the bottoms of the legs were below my knees.  I'd like to know what sort of person they designed those things for - I just can't imagine anyone that wide with so short a straddle region and such long legs.  I'm short and wide myself and I was lost in these things.  They must only come in one size - HUGEMONGOUS.

I came out of the appointment with a plan of action:  a script for a muscle relaxer to help my right piriformis muscle relax (I had to request a different med - the one Dr. SassyPants prescribed wasn't covered by my new insurance and was $300 a month! Waiting on the new script), a referral to pain management to be evaluated for a peripheral nerve stimulator for the pain, a referral to physical therapy for some help with my foot drop and weakness and the piriformis muscle problems, and a referral to a pelvic pain physical therapy group for the pudendal nerve issues.  Per Dr. SassyPants if the muscle relaxer doesn't work, we will then try Botox injections in the Buttocks to get the piriformis muscle to relax.

I don't have much in the way of reflexes left in my knees and none in my ankles.  I know my right leg is worse than my left, and the foot drop is worse on the right foot.  Dr. SassyPants says that radiation induced lumbosacral plexopathy  is the culprit and there really is no fixing it (as I suspected) but we can try and manage it.  I did tell him that I was not sure if I wanted to pursue the pudendal nerve therapy as just about any touch against that nerve sets me into to a world of pain for about a month. I will go to the evaluation and decide after learning what their treatment plan is.  As soon as I get my script for the muscle relaxer, I am to quit taking the Soma - which isn't doing an awful lot anyway. 

I'm thinking the cane is going to be a permanent fixture in my life.  Maybe I will treat myself to an antique cool cane - one with a sword in the handle or a drinking flask under the knob, or mother of pearl inlays with ebony accents.. or maybe I will get one with flames and skulls all over it.  Or how about one of those English Hunting Sticks that turn into a portable seat?? Hmmm, I could have an entire wardrobe of canes!  What a fashion accessory!

On the road tomorrow morning back out to some clients.  Luckily I have a co-worker who is going to drive us - thank heavens for her help, because I don't think The Legs would be able to make it this time.  I am coming back Wednesday, no stay overs this week as I don't believe I will be able to walk more than a couple of days the way The Legs are feeling tonight.

Called Cleveland Clinic, and I will go back there on June 24th, and will return at about the same time in July.  I will have to pick up the electronic headache diary in June and take it back in July after updating it for a month - then I will be through!!!  Hopefully the occipital stimulator results will get published and the device will get FDA approval for migraine headache pain relief.  Too many people are suffering from intractable headaches that are like me - out of medication options.

Beanie the snake bit Boston terrier is doing really well.  His foot is back to normal size and there doesn't seem to be any necrosis in the bite area.  Woo Hoo!