Wednesday, November 28, 2012

Ramblings: thorns, modern day medicine, etc

"even though I have received such wonderful revelations from God.  So to keep me from becoming proud, I was given a thorn in my flesh, a messenger from Satan to torment me and keep me from becoming proud." ~2 Corinthians 12:7

Whenever I read this passage I have to stop and wonder what Paul's thorn was......I know it isn't pertinent and that's why it isn't revealed, but I'm very curious by nature.  And then I also can't help but think of my own thorn per se.  It would undoubtedly be my bladder, no question about it.

As a little girl I recall suffering from bladder infections.  I can remember the pain well & the fear that goes along with it.  How long it would take to get a stream of urine started & then the pain of peeing razor blades would make me immediately clench & stop the flow.  And I would have to try again & on & on the cycle would go. 

I was also a bed-wetter for A LOT of years.  That may not sound so bad but the shame & embarrassment & fear that accompanied the bed-wetting issue was horrible.  I can't even put it into words, but I wouldn't wish it on my worst enemy.  And never mind sleep overs or joining the girl scouts (that often had sleep overs).  None of that was doable in my childhood.

Oddly enough when I approached puberty both of those issues seemed to just vanish.  Of course I wasn't thrilled with the bleeding, cramping, sickness, emotions, etc that come along with puberty, BUT it was much better than the bladder infections & bed wetting I must say.

Fast forward to 2000.  I was 28.  I was going in for my yearly pap smear that day.  And that morning I found myself burning up in a sweat & I grabbed a thermometer & found that I had a fever of all things.  While I was at the doctor's office I mentioned it to her.  She said that it sounded like a bladder infection, that she had seen it happen many times.  She had me pee in a cup & dipped it & said I did, in fact, have an infection & she gave me a RX for antibiotics.  As I thought it over I did realize I was urinating more frequently & with more urgency than usual, but I had had no discomfort at all.  That was such a drastic difference from the bladder infections of my early childhood. 

As I recall the following year it happened again, the same way.  I had urgency & frequency, but no pain.  I was very grateful for the no pain part of it.  But I hated having to take antibiotics. 

I can't recall how long it went on yearly for, but then at some point it began to be every 6 months & at some point the pain did come. 

Then, in 2006, I was getting an infection EVERY SINGLE MONTH.  It was such a nightmare.  We had Kaiser at the time & they wouldn't help me.  They wouldn't even SEE me.  If I called they would insist they just needed to send a RX to the pharmacy & I could pick it up. 

Eventually it settled back down to the every 6 month routine.  In late 2007 we got new insurance, a PPO, & before I could decide on a doctor I had another UTI, a horrendous one, & I actually went to the ER during the night because the pain was so severe & I had no doctor to go to.  After that I found a doctor & I scheduled a physical (I had met him at work at my new job).  And before the day of the physical even arrived I had to call & schedule an urgent UTI appointment.  I got my antibiotics & over time they came to know me well, due to all my UTIs.  When I met with his wife (she was a NP at his office) she insisted I needed to take an antibiotic EVERY SINGLE DAY OF MY LIFE for the rest of my life to keep from getting more UTIs.  This scared me to death, but when her husband came in the room he disregarded that idea completely.  I was quite thankful, but still wasn't getting to the root of the problem.  As time went on his wife (who I actually preferred over the husband) ended up only doing cosmetic procedures & didn't see patients anymore.  And I wasn't happy with the care my newborn son was receiving, so we decided to find a new doctor.

I also recall that during my pregnancy with Lil J I had a raging UTI.  My regular doctor (the one mentioned in the last paragraph) wouldn't help me, only telling me to deal with my OB.  And my OB's office didn't care much about the urgency of the situation.  I did finally give them a urine sample & they were supposed to call me with a RX.  But no one ever called.  I had an extra bottle of antibiotics on hand & checked & found they were safe during pregnancy & I started taking them & my symptoms improved.  When I finally called & asked they insisted I did NOT have a UTI & did not need antibiotics, so no antibiotics would be given.  Now I have to admit that a lot of time no one was actually checking.  It was like "ah she has these all the time, don't bother" this was the first time I was told that there was no infection BUT I highly doubt it was the first time that was the case.  Lots of time my symptoms didn't improve much, especially during those time when I was getting them every single month.  BUT on this occasion I didn't believe it, I was absolutely certain they were mistaken.

So we switched to a new doctor (recommended by a colleague of mine) & this doctor really wanted to help me.  Around 2010 I again had a several month stretch of UTIs EVERY SINGLE MONTH.  I remember he had a few ideas.  First he insisted I must have herpes.  I kept telling him I did NOT have herpes, but he insisted perhaps I just wasn't aware.  He said that it is well known that women infected with the herpes virus have chronic UTIs.  He did his blood test on me, for HSV 1 & 2 & it came back negative, no herpes.  I was a little appalled at how sad he seemed.  I know he was hoping to have found an answer, but I certainly didn't want to have herpes.  He then theorized that it might be something hormonal.  Perhaps I was approaching menopause early & things were out of whack & that was causing it.  But again he did blood work & that theory didn't pan out.  He then theorized that I must have interstitial cystitis.   This was the first time I had considered this possibility.  I did some homework & found there isn't much hope, certainly not for a cure anyways.  I learned about controlling it by diet & I did seem to see a change when I followed the diet.  But over time I was still getting UTIs even following the diet.  We loved this doctor, but I loved his PA even more & she ended up leaving & the staff at this office was unbelievably difficult to deal with.  So we finally decided to leave. 

This time I just did research online, looking at patient ratings, & chose a new doctor.  So far we've been VERY happy with this doctor.  The staff isn't perfect, but they are reasonable & have been easy to deal with.  And I really like the doctor herself.  So I've been in there several months in a row now with UTI symptoms.  When I call & say I think I have a UTI & need to be seen I am automatically scheduled with the PA.  Now no offense, she's a very nice lady, but my first time going there I met with the Doctor herself & I REALLY like her & just like the way she thinks better than the PA does.  And I feel like she is my actual doctor so I want to make the decison with her.  And I just get the feeling she has more experience & knowledge than the PA does.  So I scheduled an appointment with my doctor to discuss this.  Now in these past months when they dip my urine it shows WBCs, blood, pus, all indicative of an infection.  BUT when they send the urine out to be cultured (to see what germs will grow in a petri dish) all but the most recent didn't grow anything.  So my doctor understands my concern.  And now I am urinating visible blood, which I never have before.  It seems to me that my condition (whatever it may be) is getting more & more severe over time.  And it is REALLY affecting my quality of life at this point.  I often thank God that I am a stay at home mom, because I honestly don't think I could hold a job with this condition at this point in my life. 

I had asked my last doctor for a referral to a urologist, but he said it really wasn't necessary.  I prayed about this appointment today before I went.  (On a sidenote, it was during a time of prayer for my condition that I felt like the Lord was nudging me to push for a definitive diagnosis, not just an educated guess)  My doctor really listened to me & definitely agreed that I need to see a urologist. 

Based on my knowledge as a nurse (& some research) the possibilities appear to be: bladder stones, bladder tumors (could be either malignant or benign), or interstitial cystitis.  I would actually hope for a stone because it seems to me that it could be gotten rid of & then life could resume to normalcy.  I really hope it's not a tumor, even a benign tumor can cause some serious damage to the bladder.  And bladder cancer doesn't usually have a good prognosis. 

And if it is actually interstitial cystitis then I will continue to educate myself as best I can & see a naturopathic doctor I know & see what advice she has for me & do my best to manage it.  Looking back I can see now that even though I thought I had really cleaned up my diet & was following an IC diet there were a lot of hidden triggers still remaining in my diet.  And there were some things in my diet that I didn't even realize were triggers, I just now learned.  And then I also need to really stop & think.  The whole acid/alkaline deal just doesn't seem to come naturally for me.  The night this last problem began I ate chicken chili & cornbread for dinner.  Seemed harmless to me but thinking about it afterward I guess chili probably is acidic.  I need to think more & be more careful I guess.  And it's also more than just a matter of pH.  I was following some blogs & info that was geared for an alkaline diet, which is what I need to keep the painful acid out of my bladder.  But then I realized that some of that info was NOT IC friendly.  For example, lemons.  Lemons are citrus & seem acidic to me, but after being digested, metabolized, etc they are actually alkaline.  So I was putting lemon & honey in my tea on a regular basis.  Now that I take a closer look at IC specific diet info I see that ALL citrus, lemons included, are totally not ok. 

One theory I have had, but have yet to see anyone else mention it, is that during an IC flare the bladder is more prone to infection.  So sometimes I have pain & no infection.  And it seems to go on for some time & I end up at the doctor's office every month.  And then at some point it does actually become an infection.  So I think the flare itself (inflamation & irritation in the bladder lining) makes the bladder more prone to infection if there is bacteria present that it would otherwise be able to resist.  That's just my theory based on my experience.

So, getting back to the my doctor appointment today.  She ordered a CT of abdomen with & without contrast (she commented that it will also allow visualization of the pancreas, which is good since my father passed away from pancreatic cancer), a renal ultrasound (both with & without a full bladder) & a urogram (I believe this test looks at the function of the bladder; for example, does the bladder empty properly & completely, etc when urinating).  So I have scheduled the CT & US for mid-December.  I am still waiting for authorization for the urogram.  And once all those tests are completed I will schedule an appointment with the urologist.  AND my doc wants me to stop by the office on Monday & give a urine sample, just to see what it looks like after all these rounds of antibiotics are done (I finished the current round yesterday). 

I think we're going to have an insurance change at the end of the year, so I hope that doesn't cause any issues or delays for any of this.  It will be a switch to a PPO, so there should be more freedom than with our current HMO.

I need to start up the probiotics once again.  One of the urine cultures grew nothing but candida.  :(   I know I have a major systemic candida problem in my body due to years & years of antibiotics.  I have tried so hard to not take them, but can't seem to find a way around it.  I know that they can cause horrible things, including cancer, to my body.  And they are the reason my poor son also struggles with candida.  If my own body didn't have beneficical gut flora during pregnancy how on earth could I have passed any on to him like I was supposed to?  The only thing I had & did pass on was candida.    :(   

Alright, I guess I'm done rambling for now..................I am curious to see if I will actually get a straight answer after all these tests are complete......will they actually be able to determine WHY this is happening to me????  I sure hope so & I pray so, but I have to admit I have very little faith in the modern day medical system.

In the end, no matter what this turns out to be & how this story pans out, I know that God is in charge & God knows what is best.......what is best for EVERYONE.......for me, for my son, for my husband, etc.  I can have peace no matter how this situation turns out for that reason alone.

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