Thursday, July 15, 2010

Pancreatitis Continua

Fed Up With Belly Problems

A disappointing week for me.  The pancreatitis continues to plague me with stomach pain and a particular kind of headache you get with pancreatitis plus my struggle with dehydration continues.  My leg problems persist and Dr. SassyPants who was so optimistic a month ago is now not optomistic at all.  I am going to delay my appointment with Cleveland Clinic because I am just not well enough to travel by myself, and my driving assistant who was going along is not able to drive this next week either. 

I was feeling very ill Monday, stayed home Tuesday with some severe pain and nausea went to the ER Tuesday night - found to be dehydrated, finally got fluids and got home around 1 am Wednesday (arrived at the ER at 3:30 PM Tuesday).  My lipase levels were normal which was good but I needed liquids.  Doctor orders were to go home, rest, TAKE my pain meds, take more nausea medication for at least one more day, and if it still persists go to my regular doctor. Already feeling dehydrated again this evening, even trying to take in more fluids.  Took the oxycontin and my other meds, just feel sick in an odd way.  I've had pancreatitis make me feel this way before.  Sigh. Last time it was this bad it took eight months to resolve.

The Headache has been on the edge of taking off  maybe because of the headache I get when I have pancreatitis.  It is sticking with me well past the hospitalization - not sure why - and it is over the whole head, just worse on the left side.  The fluids last night helped some of the pain, so it might partly be a dehydration headache also.  The inability to eat is sticking with me well past last week also, not feeling too whoopy without any real food either.  Very tired yet can't sleep, except when I try to do something that needs my complete attention (like driving) then I can't stay awake.  I think my mind is in Reverso land, everything the opposite of what it should be.

Dr. SassyPants plans for my treatment disappeared Monday.  I was rather stunned, but again he has probably read the eval by the physical therapists by now, and I reported that the epidural actually seemed to make my legs worse (weaker - having problems getting up from squatting or sitting on the floor) and my urinary incontinence much worse.  He suggested yoga or aqua therapy to keep me limber, and when I said my concern was I was to be at a hospital site in August and wanted to be able to stand and do the work even with the travel he said not to count on being able to do that.  In fact he said I may not be able to do much of anything soon with The Legs, since problems have seemed to accelerate this year. 

He encouraged me to see the pain management doc and get evaluated for a spinal stimulator to see if it can help the pain. He said no more epidurals, and did not mention the botox in the piriformis muscle again. I am upset and at a loss, because it seems I am back to square one again - except it is three years later from the first time I tried to get help and the disability is much worse.  No return appointment - just a referral to a book on pain and how it effects your body - not sure if I need a book on that - think I already know too much about it already!  Guess it means you are not going to get any better by any means of modern medicine.

I missed my appointment with the pain management person Monday because I was befuddled and forgot (Dr. SassyPants through me off my stride and the dehydration was starting to make itself known) I rescheduled for Wednesday and missed that because I have been very sick today.  Hope I can make a third appointment and keep it.

I am sick enough tonight I can't think very well, and am just doing this post so I can take up some time without thinking about hurting - but then what do I write about but how much I am hurting.  Doesn't make sense but I am feeling very confused.  A dark cloud is hanging over me the last few weeks.  I actually broke down and cried for a while yesterday when the pain was at it's worse.  I am not sure what to do, and as confused as I am not sure I should even be trying to make plans until I feel a little better.

On a side note, the Skunk eradicator device just turned out to be a Skunk Amusement device.  My sister watched two skunks stop and look at it - they seemed to bob back and forth looking at the little red motion detector light, then popped it a few times with their hanneypaws, milled around, stood on their back legs and swayed to the rythm of the red lights, then went right back into the hole under her porch.  She said it was like a little video game for skunks.

Diana Lee has posted her blog carnival for this month, and it is a great source of information about summertime and migraines.  Check it out at Enjoying Summer Despite the Heat at Somebody Heal Me.  Great advice in many of the posts about how to handle being out in the summer time heat while suffering from migraine disease.

4 comments:

  1. I'm so sorry you are struggling. I wish I had some advice. Just remember you aren't alone in the "not going to get any better by any means of modern medicine" group. We're all here with you, irritated and dismayed by our options.

    Lol at the skunks. Animals are so much smarter than we think. :)

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  2. Thanks for being sympatico Steph. I knew with some of my diagnosis there were not a lot of options, but was hoping against hope I would get better.

    I told my sister she needs to start selling tickets to the amazing Skunk Farm. If they just didn't spray it would be OK....

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  3. So sorry things are so yucky for you right now. I hope you feel better soon. May I ask what is wrong with your legs? I have severe diabetic neuropathy and sounds a lot like mine. I use a power chair when having to walk for long times and use a cane otherwise. Feel better my friend. What area do you live in?

    God Bless~
    Debbie Jean

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  4. Debbie Jean - I live in SW Missouri halfway between Springfield and Joplin.

    I have had many different diagnosis for the neuropathy - they started out with diabetic neuropathy, but now are pretty sure it is "radiation induced lumbosacral plexopathy" which in short is nerve damage in the lower plexus of the spine (the area from your waistline down) from radiation therapy. I had external pelvic radiation and internal brachytherapy. From the research I have done the internal bracytherapy seems to be the culprit.

    I think the end results are the same for you and me, no matter the cause.

    I have been using a cane for the last four months and I can keep mobile longer without as much pain. Just not sure what to do about the getting up and down, etc..., and maybe a power chair is in my future. Just giving up hope is the hardest part. I live in the country and it is becoming harder and harder to drive. sigh.

    My doxie Augie says hi to your pups! Thanks for the blessings!

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