On a Merry Go Round that won't stop and I WANT OFF NOW

This is beyond my tolerance.   I know I won't die from it but the pain is out of control.  I know there must be millions of other people that are in more pain than I am - but I HURT.  I finally found a urologist on my insurance plan and I have been pre-certified to make an appointment with her.  I plan to call tomorrow.

I gave up today calling the pain management doc - plan to get back on that tomorrow.  I looked at the label on the prescription that they gave me for breakthrough pain.  I can take up to 6 a day - which is 180 pills for a month.  But when I called the pharmacy, they told me the doc wrote the script for 120 pills - so now we are at 60 short.  The way the script is written cannot be filled that way because the boxes of the med  come with 7 - 4 pack pills - so that is now at 112 pills.  The 6 a day would be very helpful when I wake up every 2 hours in screaming pain.  When someone figures this math out, please let me know - I don't get it and I don't think the morphine has anything to do with this.

I am living in constant pain unless I lay down all day and then on a pain scale of 1 to 10, my pain may go down to between 4-5.  If I sit up or stand for more than 30 minutes to an hour, my pain is off the scale.  The doc office was not cooperative yesterday - I hope they are more helpful tomorrow.  I don't want to live like this - I can't.

Thanks for the continued prayers and support.  I think I will now  go scream in a pillow as loud as I can and hope that releases something - don't know what yet but hey can't hurt.

More later-

New Anti-Spasmodic

Hi All -

Mom is on her way to the pharmacy to pick me up yet another medicine - an anti-spasmodic to be taken in conjunction with the Valium.  Here's to hoping and praying.

I called the doc office this morning to get the results of the stat urine culture - negative, nope, nada and not the answer I was hoping for.

I keep thinking back to the time the doc said the bladder cystitis could get worse of it's own accord.  At this point, I am just hoping it got beat up and bruised during my procedure.

I am severely sleep deprived all courtesy of my bladder.  I hope I can get a nap in once the new med kicks in  A gamble of whether it will work or not.  I will keep you informed on whether it helps or not.

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Up all night part 2

One would think after 240 mg of Morphine, 800 mcg of Fentynal, 15 mg of Valium and some vicodin, I would be knocked out without a care in the world.  I am missing one drug - another anti-spasmodic due to a CVS screw up.

I have to be awake enough in the morning to get it all straightened out.  Hope my doc office is not one of those that close on Friday.

I hope this all boils down to an UTI and not the words of my last urologist saying that this condition can get worse over time.

Sweet dreams -

Update

The doc prescribed me a med that no pharmacy has in stock and must be ordered.  I should have it by next Wednesday.  Love it.  It is a fentanyl related tablet that you put between cheek and gum and is fast acting - just have to wait a week for more relief.

Until then - laying low and praying for the pain to ease.  Did stop by my primary doc to do a pee test to rule out an UTI.  Hoping that it is that simple.

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A Week of Hell

Nothing is helping my bladder.  Not the 240mg of morphine, not the vicodin or Valium.  Valium is helping some but the docs do not like to prescribe much because it is highly addictive.  I do not have an addictive personality.  On a pain scale of 1 to 10, my pain is at a 12.

I think my bladder got the bad end of the stick during last week's procedure.  I am going to the pain management doc tomorrow morning.  I am  hoping she will give me something to get through this.  It hurts so bad to urinate.  My bladder goes into severe spasms and it hurts like heck almost to the point of tears.  Valium helps with the spasms.

I need every prayer I can get - thank you to all my prayer warriors out there. 

I will update tomorrow after I see the doc.

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MORE Morphine please - again!

This "little" outpatient procedure has turned into an absolute nightmare.  Stitches, bleeding and unbelievable pain.  I put in a call to my pain management doc (you sign an agreement to not get narcotics etc. from other docs).

They are really good about getting back to you.  She had me double my Morphine ER (extended release) 30mg pills to two three times a day.  I can also take my Morphine IR  (immediate release) 15mg up to four times a day.  I hope I can at least get it under some control so that it doesn't get so out there that it is difficult to get a handle on it.  So much for my high tolerance of pain.   Prayers are greatly appreciated.

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Long Night

Hi All

As you know, I had an outpatient procedure yesterday.  I was in so much pain.  Less today but bad.  I was up for nearly 24 hours - got up at 4:30 yesterday morning.  The pain kept me up till about 3:30 this morning.  I am bone tired and hurting.

The plan was to cut away tissue as well as laser away skin.  As I have said in an earlier blog entry, the  lining between the vaginal wall and the bladder as well as the intestines is very thin.  The doctor had to cut short the procedure because he saw my intestines.  Thank God he did not puncture or nick them.  He had to sew me up and be done.  I feel completely rotor-rootered in my lower pelvic region.

My last blog about dilators is appropriate to this post as well.  Not only have I shrunk in diameter, I have also shrunk in length.  This makes examinations as well as procedures more difficult.  Also I think this is one reason of why I am hurting so bad.  I cannot use the dilator for 8 weeks - bummer since I finally had talked myself into using them.

There was nothing to be done on the outside but it is super swollen, it burns to pee, stand up, sit up and lay down.  Can't get comfy at all.  I am wondering if the reason is the one above. My mom doesn't remember all what the doc said and I have other questions so I plan to call and leave a message for him to call me.

When you have bladder cystitis, you pee a lot.  There is a method to it or you will have to pee again as soon as you stand up.  You have to sit there and  force all the pee out - this can take a couple of minutes, but worth it so that you do not  have to immediately pee again.  Every time I peed through the night, I just sat there and said a constant prayer to ask for it not to hurt and sting so much.  The prayer was answered.  Thank you God. And to all those praying for me, thank you very much from the bottom of my heart.

More  later -

Another thing about radiation to the pelvic region

If you can't take it - stop reading here.

You are diagnosed with CANCER.  You are blinded by the diagnoses.  You are told the treatment plan and you go through it all.  Then you think you are done.  But you are not - there is much more to it than that. I have been very open about almost all the side effects - but one.

Radiation can kill off tissue in the vaginal canal as well as shrink it so that even a finger won't can't fit.  This is why it always hurts when I have an exam that includes a speculum.  This damage is the kind that keeps on giving.  This effect won't go away.

I now have shrunk - ouch on the exams.  I also have dying tissue on the right side of my vaginal canal that also makes me cry at the exams.  They do tell you about this side effect up front and suggest that you use vaginal dialators to keep your skin stretched out and supple.  I did not listen - they had cut and mutilated me so much it was hard to face.  I am having to now face it or examing me can become even worse than it is now and/or make it impossible.

Vaginal dialators are available on the web.  Do the research and get a good set with multiple diameters.  They are expensive - so like I said do your research and invest in a good set.  You may have a little bleeding - but that is okay.   If you have tons of bleeding, stop using them and call your doc.

Since I did not listen and follow through last year, I have only made it more difficult on myself.  It is amazing that your vaginal canal shrinks and tissue dies - and that it is a lifelong radiation effect.  Radiation is an ugly thing.  Wish I would have done this from the beginning and would suggest that you use the dialators when they first tell you to. 

More later -

Countdown to next outpatient procedure

One week left before the next procedure.  It always brings my body down for 2 to 3 days.  Yay!

My Mom forwarded me a blog regarding motherhood and how to maintain your cool - it is a good read for anyone who has children of any age in the house especially under the age of 80.

http://www.wellgroundedsite.com/2012/05/thermometer/

Hope you enjoy it as much as I did - I needed the reminder with three 10 year olds in the house.

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More Morphine Please - Small update

Went to the pain management doc today.  My bladder has been bad.  I was warned it could worsen at any time - just love that radiation.  So instead of taking 120mg of morphine a day, I am now up to 150 135mg a day.  Yes, I do function - I am able to walk a straight line while chewing gum and popping bubbles.  Maybe I overstated the function part - I'm a CPA who can't count the mgs of morphine I am on!

I hate radiation with such a passion almost as much as cancer.   It has taken so much from me - even little things.  I go through the grieving process over and over again when any bad news hits.  Which happens a lot 'round here.

But at the end of the day, I know I am here by the grace of God.  I know it could be much, much worse.  So, I am grateful to still be here.

Out-patient surgery 5/15 - yay me.

Rest well.

More later -

In my Spam email

So, I was checking my email and went to go delete the spam messages.  When I saw them, they gave me a chuckle.

I could become a member of the AARP (maybe if I was old enough) and drink coffee to help me from nodding off all day on the couch while sitting up. 

I could use my Horizon Gold Card (didn't read it far enough down so don't know if it is a credit card.  but for purposes here it is a credit card) to purchase some Hanes undies for the times I wasn't using depends to go on a date with a millionaire that I meet through Sugar Daddy email.

More later -