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Reproductive Rights Duplicity

Posted in Infertility with tags , , , , on August 20, 2009 by Alison Amok

“Future generations will look back at the beginning of the 21st century and marvel that intelligent people actually tried to stop biomedical progress just to protect their cramped and limited vision of human nature.”

-Ronald Bailey

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Hello?  Is this thing on?  Can you hear me?  Here, let me step up here on this soapbox so you can hear me better.

Reproductive Rights.  What does that phrase mean to you?  According to the Center for Reproductive Rights their “issues reflect what a woman needs to direct her own life and make healthy decisions: Legal, safe, and affordable contraception and abortion.  Good obstetric and prenatal care for a safe & healthy pregnancy. Information about reproductive health that is free from censorship.”

I’m confused though as to why reproductive rights apparently only apply to those who can get pregnant and those who don’t want to get pregnant.  And an organization that’s whole purpose for existing is to further the reproductive rights of women has only officially been involved in one instance of the rights of couples to pursue fertility treatments (and that wasn’t even in the United States).

Another term that is quite a misnomer is family planning.  According to Wikipedia, “family planning is the planning of when to have children, and the use of birth control and other tecniques to implement such plans.  Other techniques commonly used include sexuality education, prevention and management of sexually transmitted infections, pre-conception counseling and management, and infertility management”.  But when you do a Google search for family planning the services that come up are birth control, sexual education and abortions.  And lets not even begin that the picture that was deemed appropriate to symbolize family planning in the Wikipedia article was a picture of a common birth control package.  Again, how is it that the term family planning apparently only applies to those who don’t want any or more family?

Realistically, why is infertility treatments not included in family planning?  Just because I am biologically impaired when it comes to conceiving my children doesn’t mean that the methods I choose are not family planning.  Considering the fact that a heck of a lot more “planning” goes into any fertility treatment, I’m confused as to why infertile couples are overlooked and often mocked for their family planning efforts.

Take into consideration the growing environmental movement.  An article written for the online blog Babble was about how eco-activists are pushing the idea of overpopulation and how it is environmentally irresponsible to excessively procreate.  Titled The New Eugenics, the article also discusses how couples who pursue fertility treatments are often scorned as being indulgent, selfish and the four-letter-word of the eco world – polluters.  The author uses another article from the New York Times Magazine, this article was written by a woman who hired a surrogate after five years of fertility treatments.  Yet despite being a well written article about one couples infertility journey and their choices in their family planning sadly very few of the anonymous commentors took away the intended meaning of the article.

There were 404 comments to this article.  The first comment was left by H.H. in Port Hardy, British Columbia, Canada.  The enlightened H.H left the following comment:  “You’d think with nearly 7 billion people on this planet, a couple might think of it as a blessing that they can not add any more “consumers” to our Earth’s already overstretched resources.”  Sadly, H.H. wasn’t the only person who left such comments.  The author wasn’t just chastised for adding more “consumers”, she was overwhelming dismissed as being elitist and having more money than sense. The comments to this one article overwhelmingly prove that that the population as a whole just does not get infertility issues.

I don’t know about you but Husband and I are not rich by any standard.  I am a medically-retired, stay-at-home-wife.  I go to school full time.  Husband works for the government.  Luckily I was able to retain my health insurance because of my pancre-ass but my military insurance doesn’t cover all of our fertility treatments.  Infertility is an expensive disease.  And one that isn’t just a physical affliction, its mentally and emotionally exhausting.  It is a disease that permeates to the very fiber of your being.  Biologically, your reason for existing.

I’ve read articles and comments that actually go as far as suggest that as an infertile couple, we should “save the world” and adopt.  We should not be allowed to procreate and/or should use the opportunity to rescue the abandoned children of the world.  I’m sorry.  I am not here to save the world of its ills.  I am one person and I have one question.  Why is it ok for you to procreate or not by using “family planning” but as an infertile am not?

In June, I participated in RESOLVE‘s Advocacy Day.  On a day that was filled with health care reform rallies and protesters, a group of women and men sat one-on-one with their elected congressional representatives to discuss infertility.  We simply asked for them to help us receive equal health care rights.  Currently only 15 states require insurance coverage for fertility treatment and even then the laws vary.  And just from my personal experience I encountered legislative workers who were not only not interested in helping but openly so.  Yet our current president and congress plan on including taxpayer funded abortions in the pending Health Care Reform (to be fair, they plan on not excluding it).

So here we are back to family planning.  I don’t know about you but I’m more than a little upset about all of this.  I take offense to the fact that a disease that already makes me feel less human, less of a woman also makes me a target for eco-activists, well meaning albeit a little miss-guided.  I feel that I have to stand up and speak for this disease that affects so many.  Because infertility doesn’t just affect me or Husband.  It affects our parents who are not grandparents, our siblings who have no nieces or nephews and our peers who are unsure where their friendship lies in our relationship.  I just want a family and I don’t know what’s more of a basic human right than that.

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That what does not kill me…well then again….

Posted in Pancre-ass with tags , , , , on July 13, 2009 by Alison Amok

“In spite of illness, in spite even of the archenemy sorry, one can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways.”

-Anais Nin

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I know, I know.  I’ve been gone for awhile…and its not about to be over but I wanted to keep y’all up to date on the going ons around here.

So lets see… my new doctors here in DC decided that in order to proceed we needed to re-evaluate where I am pancreatic-ly (shut up, I’m taking some liberties here!).  So we did an Endoscopic Ultrasound (EUS) last week to find out if I’ve developed Chronic Pancreatitis.  The thinking was that I have had five (5!) ERCP‘s.  Each time developing acute pancreatitis.  Each ERCP and each episode of acute pancreatitis put me at risk for developing CHRONIC pancreatitis.  I know it’s confusing. But on my MRI’s they had seen some pancreatic changes and were concerned.  So that’s fine, it was mild sedation and a nice nap.  But they didn’t find any significant changes.  This is good.

They found my common bile duct is almost completely occluded.  This is bad.  Very bad.  My pancreatic duct has been completely occluded for about four years now.  No one wanted to clear it out because they were unsure of where it came from.  And very afraid that messing with the occlusion could cause other things to go bad.  And luckily I have a secondary pancreatic duct that helps re-route things.  That’s why I’ve needed all these ERCP’s because my secondary duct is significantly smaller because well it was never meant to be the primary pancreatic duct.  That’s why its not called that, duh!  But any who, it will get sludged up and part of my illness causes my ducts to develop strictures (meaning they cramp down) so then things don’t flow great.  So ERCP is done to basically clear out the ducts and place stents to prop them back open.

technical difficulties

Well, the problem is that the common bile duct is the big duct that everything flows through.  This cannot become occluded.  That would be very bad.  Very, very bad.  And this is very, very serious.  Because they have no idea why my ducts are doing this, how to keep it from happening and the concern is that with each ERCP my complications get worse and worse.  So right now, I’m scheduled for my next ERCP on Wednesday the 15th of July.

It was very bizarre after that EUS because the doctors were so alarmed about what they found they called my doctor while I was still under sedation.  So one of his staff doctors was waiting for me when I came out of anesthesia.  He told me what they found and that my Doctor would be calling me the next day to schedule a surgery date.  AND to make it even more nerve wrecking for me, when they called, they had already scheduled my surgery!  They didn’t even give me much chance to procrastinate.  I know it’s in my best interest to get this whole thing over but my anxiety has just shot through the roof!

And I’m driving Husband crazy because when I get anxious, I organize.  I organize and talk too much. I’m not looking forward to this at all.  I’m not looking forward to more IV’s, crazy pain and the pain medications needed to help control them.  I hate the blood draws.  I hate the succession of medical personnel who have to all come in and talk to me about my pain and press on my stomach.  As if my pain wasn’t bad enough, lets all smush my liver and pancreas down to make it worse.  First the medical student, then the intern, then the resident, then the fellow and finally my doctor.  And to be completely honest, I am really freaked out.  And poor Husband.  He is beyond freaked but as usual he pretends it is all fine.  I know he thinks he needs to be strong for me and that is why I love that man.  But he’s so good too me.  He’s been hinting that maybe I should buy some new audio-books, that way he doesn’t have to read to me!  I’m going to do that but it’s always so comforting to have him read to me anyways.

So we are just pressing on.  I’m packing my bag.  Gathering all my hospital clothes.  My tank tops, my comfortable pants, all my colorful socks so I can stay clothed, decent and out of those horrible hospital gowns.  Oh and my beautiful cardigans.  Those are important so I can stay me, stay comfortable and warm but hospital appropriate.  I’ve gone through my millions of movies and picked out the ones I’ve been meaning to watch and added them to my perennial favorites.  I’ve also added a few for Husband to watch because we all know that I really don’t watch anything because I’m so drugged.  And a couple for my mom who will be coming up from North Carolina on Tuesday.

I’ve also dealt with the unpleasant details of all of this.  I’ve updated my advance directives and living will.  Which is something everyone should have no matter their health status.  It really is the only way to ensure your wishes are carried out.  Luckily, my family and Husband all feel the same way about this.  Organ donation always.  And Husband and I both have included in our living wills that we do not want extraordinary measures taken.  Our medical backgrounds I think helped us with this decision.  We both have agreed that while it would be hard to say goodbye, prolonged life-support is only benefiting the family and I believe that when it’s my time, it’s my time.  Obviously, if there is a chance of a good outcome then this wouldn’t be the case.  Death is never easy to deal with but we both know and have come to terms with that my illness most likely will become terminal at one point.  Either from cancer or complications from a surgery.  But I think because of this we appreciate each other a little more.  We embrace the time we have.  I mean seriously, its entirely possible I could live another 50 years!  But if I don’t, I do not want to have any regrets.  I am daily grateful for having such a wonderful husband and family and know that my life is good.  I have to admit, it is a little humbling and more than a little hard thinking about these types of things at our age.  Very against nature.  But we have each other and hopefully one day, children.  And we can’t forget Amelia!  OK, I’m done being Debbie Downer.

But enough of the sad stuff.  Husband has the day off on Wednesday but has to go back to work the next day and has to go to Asia for secret squirrel duty later in the week.  He can call off work during the week but because of visa issues he cannot cancel the Asia trip.  Visa’s are a pain in the ass and require the paperwork completed months in advance, so no one else can fill in for him at this point.  Mom (mine) will be here to babysit me while Husband is at work.  She’ll be staying at my Aunt Joni’s and Husband will drop me off each morning before he goes to work, like a daycare for the incredibly grumpy, fussy and non-compliant.  Because Husband is very afraid to leave me home by myself.  Not so much because he is afraid I’ll keel over or anything but more for the simple fact that most likely I will need to go to the ER.  Normally, I get to go home after my procedure.  I’m not in terrible pain afterward, more than normal but they send me home with more pain meds, and I’m not feeling too terrible.  But around day two as my pancreatitis starts to kick in, I get MISERABLE.  I can’t sleep, I can’t eat, I don’t want to eat, I can barely stand up, I’m normally beyond nauseous and even sometimes throwing up.  And so I end up back in the ER for my pain and then admitted because of my pancreatitis.  So husband was nervous about leaving me at home by myself just because he didn’t want me to be miserable at home, waiting for him to come home so I can go to the ER.  And also because I’m notorious for trying to avoid the ER like the plague.  I’m always the last one to admit that I need to go and normally am sulky the whole way there.  Its not that the ER isn’t a pleasant experience….well it’s actually not.  But I have horrible veins from years and years of procedures, so it takes multiple IV attempts, normally ending up in some sort of semi-permanent catheter placed like a PICC line or a central line.  Which are no fun at all.  Then the drugs.  All the drugs.  They are a neccessary evil.  And then the IV fluid.  And then because of all my medications, IV fluids, multiple IV sticks, I end up looking puffy, bruised and all around like I’ve been a round or two in the ring.

I explained it

So, another surgery on Wednesday.  I probably won’t be blogging during that time, but I might.  But I probably will be on Twitter @RunAmokAmok.  Those who know and love me can text me.  And emails are always welcome, RunAmokAmok at gmail dot com.  I will have my computer with me and the hospital does have free wi-fi.  I will write y’all back but you’ll have to excuse the typos because let me tell you, talking is difficult on all those drugs, let alone typing.  Husband might log on for me to keep you up to date but most likely it will be Liz, my BFF who logs in to keep y’all up to date. (BTW, y’all should totally check out her kick ass blog, The Wit Factory.  She is just totally effing hilarious)

And while I’m in the hospital, flowers are always welcome!  I love all things purple.  😉  And I love those fruit bouquets by Edible Arrangements, seriously, the more pineapple and strawberries and CHOCOLATE covered strawberries, the better!  I also like Sour Patch Kids.  The sourness helps with the nausea so it does a double duty.  And I love visitors!   And I’m sure Husband would love someone else to show up and read to me so he doesn’t have to read yet another Nora Roberts sex scene.  (Everytime he asks how we ladies can read these romance novels without getting…um….aroused all the time.  I tell him we do, its just easier for us to hide 😉 )  So if you’re so inclined and in the area, send me an email and we’ll let you know where I am.

thorazine

But otherwise I will be busy trying not to throw up, watching movies in between my narcotic induced blackouts, complaining about my 15th IV stick, begging Husband to rub my feet/put lotion on my legs/and or help me please brush my teeth, wash my hair and look less like death warmed over.  Pleasant, no?  Well my dears…. seriously.  I could really use the distractions.  Email me.  Email me frequently.  Text me.  Text me frequently.  Twitter me!   Wish me luck.  Pray for me.  Pray for Husband to maintain his patience while dealing with me.  Because really, we all know I’m a complete pain in the ass on a good day.  He could totally use a break too so like I said, visitors bearing good food for him will never be turned away.

Love y’all.  It will be ok.

drugs on brain

Pancre-Ass Act 2

Posted in Pancre-ass with tags , , , , , , on May 30, 2009 by Alison Amok

“Vitality shows in not only the ability to persist but the ability to start over.”

-F. Scott Fitzgerald

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If you’re just getting here please read the first part of this story at Pancre-Ass Act 1.

So here we are, nine months out from my last surgery.  I can normally be found attached to my heating pad on any given day, which has caused a permanent “burn” to my stomach from living with it on my tummy trying to help with the pain.  I’m pretty tethered to my home these days by either my heating pad or my many medications.  I can’t just run out on errands without planning or a designated driver because I need to take narcotics and anti-nausea medication that make it unsafe for me to drive.  So I plan my outings for when my medication is wearing off and I can safely drive.  Every day I take two different pain medications, one a narcotic, the other a “synthetic narcotic” that makes my pain manageable.  I also take two different anti-nausea medications, one that is incredibly sedating and the other, while it does not make me sleepy, its made for cancer patients and the chemotherapy induced nausea.  This second pill is incredibly expensive and costs about $30 a pill.  So needless to say, my insurance only allows me so many of these a month.

As I’ve previously mentioned, I was in the Air Force.  All this began in 2004 about 3 years into my enlistment.  I finally was medically retired in December of 2008.  So I’ve been able to keep my health insurance and get a small retirement check every month.  This is nice because Husband and I don’t have to worry much about the costs of my care and we can afford for me to be sick.  I don’t have to work if I don’t want to and am able to go back to school full time now.

I bet you’re wondering exactly how much patient care I’ve racked up so let me tell you.  I have had 5 ERCP’s, my gallbladder removed, my appendix removed and polyps removed from my uterus.  I have been admitted to the hospital for pancreatitis 6 times and I have lost count the ER visits for when I lose control of my pain and can’t handle it at home any more.  My ER visits normally entail IV fluids, a crazy amount of narcotics, assorted non-narcotic pain medications, multiple doses of anti-nausea medication, blood draws to make sure my liver and pancreatic enzymes are too crazy high warranting an actual hospital admission and an occasional CT scan or abdominal x-ray just to cover the ER doc’s butt and make sure I don’t have some weird tumor or obstruction causing my issues.

I hate ER’s.  HATE HATE HATE them… Well I hate being a patient in them.  I love working in the ER.  Because ER’s deal with all the crayzee who want these drugs and its hard not to be looked at questionably until they read my history.  And then I get absolutely snowed from all the drugs they start pumping through my IV.  And there are good nurses and not-so-great nurses.  The doctors normally are totally understanding and way helpful.  But the nurses can sometimes be real bitches.

Look, I know how it rolls in ERs.  I’ve worked in them my whole professional career until recently.  And some people are just lazy, crazy, bitchy, and/or burnt out and need to move on.  The worst is I’ll occasionally get a nurse who forgets how to push certain drugs and I end up with my arm on fire because they pushed a medication too fast.  Or they don’t listen to me when I tell them my IV has infiltrated again.  And don’t even get me started on telling them I’m a hard stick.  I never tell anyone anymore, I just let them figure it out for themselves.  Because I have learned the HARD WAY that if you tell the person putting in your IV that you are a hard stick they will blow it off and go out of their way to prove your wrong even if that means sticking you 17 times.  YES, once I was so sick I went through 17 sticks before I was able to get an IV.  I do have a rule though.  If you are rude and not nice to me you get two tries, move on let someone else try it because I’m already sick I don’t need you taking your angst out on me.  If you are pleasant about it though, I’ll let you stick me ’til the cows come home because I know its not your fault.  It’s my veins, they suck and pretty much don’t want to participate.  Oh and by the way… Husband is a medic by trade too courtesy of the Air Force and he has a time or two gotten frustrated with the medical staff and started my IV’s for me.

Oh and I forgot to mention the best part, with all my liver issues I bruise incredibly easily.  And all the blood draws and IV’s needed for my tests often make my arms look like a druggy.  There have been days when Husband refuses to let me leave the house without long sleeves on because he’s afraid people will think he’s beating me.

But we make it through it all some how.  It’s become our life and I know its hard for people to understand it.  My parents are wonderful though albeit a little frustrated sometimes because its hard for them to see me so sick and in the hospital all the time.  My mother worries about all my ER visits and hospital admissions and always tries to convince me to let her rush to my side.  Normally I successfully can convince her I’m fine and Husband is taking good care of me.  But now that we live 4 hours away from her, here in DC, instead of the 10 hours we were when we lived in Ohio… I’m thinking I won’t be able to convince her to stay at home anymore.  But that’s fine.  Being in the hospital is really boring and even with all the crazy drugs its no fun.  So all visitors are welcome and I’ve been told I can be pretty entertaining while attached to the Demerol and/or Morphine drip.

Husband and I have it down to a science though.  Before each of my surgeries, I pack a back of essentials.  Underwear, comfortable bras, socks, yoga pants, tank tops and cardigan sweaters.  I throw in some toiletries, like those nice face wipes, Clinique face lotion, my Johnson’s baby lotion for my skin, a comb, a new toothbrush and toothpaste, deodorant.  I normally put in a book that I never read because the drugs make it hard to focus and read.   I put some new DVD movies and my old faves in a travel CD book and pack that too.  I make sure my computer, Nintendo DS, my games, my iPod and all my chargers are packed.  And we put that aside so when I eventually am admitted, Husband can just run home and I have all my creature comforts.

The clothes are the most important part though.  I hate, hate, hate hospital gowns.  They are uncomfortable and completely unflattering.  So I like to bring my own clothes.  The clothes serve a purpose though and that’s why I always bring my own.

Because all the IV contrasts from the ERCP’s and MRI’s and CT’s and all the drugs are so harsh on my veins, my veins are really bad.  I have little veins and they are angry angry after years of medical drama.  And normally I end up with some sort of semi-permanent IV access such as a PICC line or central line.  This is always better in the long run because then I can have a couple different IV fluids running at the same time, have my medication given to me on time, and they have an easy way to draw my blood with out poking and re-poking and re-poking.

The tank tops are important so I don’t have to strip everytime my lines need to be fussed with.  They provide easy access to my chest or arms and I can retain some of my modesty.  And my cardigans provide warmth while being gentle and stretch around any lines coming from my arms.  Plus just because I’m sick, it doesn’t mean I have to be unfashionable.  I normally pack my most colorful sweaters, the bright colors or the fun polka dot ones.  And my socks are always colorful.  I have a million of ankle socks in every color and pattern available.  Because looking down at my feet in my hospital bed, seeing purple polka dots makes my heart happy.

Husband is always great to me during this time and never lets me see his fear.  If anything he takes the opportunity to razz on me a little bit more.  😉  He always sneaks me in an ICEE or two.  He rubs my swollen feet caused by all the IV fluids and puts lotion on my itchy dry legs.  In the ER and right after my procedures, he’ll read to me.  And he such a good sport because he reads whatever I happen to be reading at the time, even if its one of those guilty pleasure romance novels by Nora Roberts.  He is a fabulous husband and I love him dearly, but the fact that he reads to me is what melts my heart.  He hates it, I know, but he does it without complaint and even grudgingly gets into the story and will do voices.

So there it is.  The whole story.  Don’t be afraid to ask questions.  If I wasn’t clear on something let me know!  Or if you just want to know all the little, juicy details I will share!  I have come to terms with my life and it is kinda cathartic talking about it all.

In another post I’ll talk about my fears for the future.  But I feel I’ve said enough for now and I need to give y’all a chance to digest (pun intended) all the information given to you today.

I have an appointment at Georgetown with my doctor in two weeks and we’ll be scheduling my next ERCP then.  I’m dreading the surgery but looking forward to being off the drugs again for awhile.  Its always fun being healthy again, even temporarily, and I normally go a little wild.  Last time I got a tattoo.  This time, I’m starting school so I’m thinking thats enough adventure for this heathly cycle.

Pancre-Ass Act 1

Posted in Pancre-ass with tags , , , , , , , on May 30, 2009 by Alison Amok

“Life’s disappointments are harder to take when you don’t know any swear words.”

-Calvin & Hobbes (Bill Watterson)

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I am broken and Husband apparently forgot to buy the extended warranty when he purchased me.

It recently occurred to me that you might be curious about this mystery illness I’ve casually glossed over and mentioned here and there.  This post will not be witty.  It will not be full of wistful prose.  It will be an open, outright, and frank discussion on the reality of my life.  So here it goes, try and keep up.

Basically, I have broken pancreatic (or biliary) ducts.  For those of you not in the know, because seriously who really wanders around going “Wow today I want to learn all about the pancreas”, I will explain. So lets get a little anatomy lesson first.

Three organs produce digestive “juices” that help break down the food you eat.  These are the pancreas, the liver and the gallbladder.  The biliary ducts act as the plumbing system for these organs.  The biliary ducts allow bile from your liver to be released from your liver.   The pancreas is the organ normally know for being responsible for producing insulin, which is used to control your blood sugar.  But the pancreas also is responsible for producing a number of hormones and also enzymes that further help breakdown food in your intestines.  Bile is required to digest the food you eat.  Extra bile is stored in the gallbladder until its needed, this is a good organ to have but not necessary so when you have gallbladder problems surgeons normally just remove it.  The gallbladder is basically the middle man between the liver and pancreas, because it holds bile until its needed.  The biliary tree is basically all the ducts that connect these three organs and transport the bile and pancreatic enzymes to the intestines.  So just to make sure we’re all on the same page here…. Bile comes from the liver, through bile ducts, into the pancreas, extra bile is stored in the gallbladder, extra enzymes are added by the pancreas, then all of the bile is transported through the common bile duct into the intestines to break down and absorb your food.  Got it?  Good.

So now that you understand basically how this system works, you can begin to understand my condition.  There isn’t really an official “name” to the condition (like Lupus or Diabetes) I have but it basically referred to as Pancreatic Duct Strictures.  My condition isn’t really just one thing, its more like a lot of little things causing huge problems.  Pancreatic duct strictures can be the result from several things like infection, cancer, gallstones, or for unknown causes which is my version.  My doctors have no idea why I suddenly developed these strictures.   A stricture is basically a significant narrowing of the duct, causing a much smaller hole for everything to go through.

These strictures cause huge problems though.   Because my ducts become so narrow, bile that normally would pass through the pancreas is backing up into my liver.  And because the liver also filters the body of toxins, these toxins are also included in the bile on the way out via the bile ducts.  So all those toxins building up in my liver cause for a lot of problems.  This whole cascade of problems is where my illness lies.  The liver and pancreas cause me a lot of pain.  They also give me a lot of nausea.  And when my liver is particularly sick I get unbelievably itchy.  Because apparently all those toxins that build up in the liver cause a reaction similar to an allergic reaction and cause itching that no allergy medication can fix.  The damaged liver also causes fatigue and arthritis symptoms.  And because my pancreas isn’t being used like it normally should be, because of the duct stricture within the pancreas itself, my pancreas is slowly atrophying.  Basically, its shrinking and slowly dying because it’s not being used, just like muscles do if they’ve been in a cast too long!

At this point I’m sure you’re wondering why this hasn’t been fixed yet!  Well that is a simple answer, it can’t.  Well that’s not entirely true.  There is a major surgery that is an option that requires basically my whole digestive system to be literally taken apart and re-wired.  This is very serious and normally reserved for last case scenario.  Transplantation might also become an option later on if my liver and pancreas become damaged enough.

But we do have a temporary fix and this is why all this comes in cycles.  About once a year, or sometimes more often if my liver starts getting really sick, I have a surgical procedure called an ERCP.  This procedure is done under general anesthesia, that uses endoscopes, like they use for colonoscopies, to take a closer look at the inside of my pancreas and all the ducts.  During this procedure my doctor inserts a temporary stent into the strictured area, to re-stretch out the stricture.  But obviously this is temporary and the ducts start to clamp down again.

After my ERCP, I normally develop pancreatitis.  This is a complication that occurs in 40% of patients after an ERCP, but due to my already scarred ducts and repeated procedures, I’ve developed it every time.  Pancreatitis is literally hell on earth.  Imagine the worst pain you’ve ever had then multiply it times ten.  And all the narcotics they pump through my veins barely touch the pain, they basically just sedate, numb and make me not care about the pain.  I’m live in the drugged state that isn’t sleep because I hurt so bad that sleep is impossible but it isn’t awake because of all the chemicals.  Normally I lose two weeks of my life to a drug-induced haze following my surgeries.

But then, I’m better again.  Its more than better, I’m fabulous again.  Its like one day I wake up and all the pain, the nausea, itching, fatigue is gone.  I am incredibly healthy for about six months and then I begin my downward slide again.  Its a horrible, never ending cycle.  But it is my life, and Husband and I have adjusted to it.

My last surgery was in August of last year and I am pretty sick these days.  The downward spiral towards my next surgery is getting shorter.  I’ve postponed my surgery to about as far as I can go.  Husband and I were hoping to try and push my next surgery out until August again in an attempt for me to be really healthy at the end of this year.  We are going to Disney World in December for our five year anniversary, because we never were able to take a honeymoon because I needed to have an ERCP right after our wedding and then Husband was deployed to Afghanistan for a year about six months after our wedding.  And then life got in the way as it normally does.  I’m also going back to school full time and didn’t want to be sick my first few months, while trying to get back into school mode.

I figure this is a good stopping point for right now.  The rest of the story will be in my next post.  I just don’t want to overwhelm y’all with too much at once.  Because I know it is a crazy story.