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My Challenge

Posted on 2014.08.20 at 23:33
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While I cannot imagine having ALS and I in no way begrudge it getting the attention it should have had all along, I am sick of the stupid challenges...not because it is spreading the word but because it is spreading the word often without understanding of what it is.  Some donations have come of it and in that respect it is worthwhile.  However, I wish all illnesses that are ignored by medicine and misunderstood by society could have the same support and spotlight.  So here I go...

I do not have ALS but I know that dumping a bucket of ice water on me will in now way help me relate or understand to what someone with ALS is going through.  I can offer compassion, but I cannot truly understand.  What I do understand is having a chronic condition that severely interferes with your life; I understand having a condition that is misunderstood at best and unheard of at worst; I understand the medical community's lack of knowledge;  I understand failed treatment after treatment, misdiagnosis after misdiagnosis because you don't fit into the box the doctors want you to fit in; I understand the severe lack of funding for a illness that completely devastates someone's life; I understand having to give up hopes and dreams and all prospects of a normal life because of this illness; I understand what it is like to live with chronic pain and all the misconceptions and well-meaning minimalizations that go with it.  Because of this I know that ice water won't help me "experience" ALS, and I'm willing to bet most people with ALS wouldn't want to subject you to it if they could.  But I do understand suffering and through that understanding, I have a great deal of compassion for anyone suffering with an illness like ALS.  We must support each other and speak up about our causes...here is my story.

I have stage IV Endometriosis.  I was in the sixth grade the first time I started having pain with my period.  I also had digestive issues.  The doctors told my parents I needed more fiber and I was forced to take this brown "medicine" that made me vomit.  Eventually my parents gave up, hoping it was anxiety and I would outgrow it.  My period was never "regular..."  I would have it for three days then not for two months then have it for two weeks, etc.  By high school it had progressed to the point I would black out from pain.  I was taken to the doctor and told I had a cyst and it was twisting, causing the pain.  When the pain persisted they did a pelvic exam at the age of 16 and because I was uncomfortable with it, they claimed I had to be molested and questioned me regarding who it was.  It was humiliating and embarrassing.  They wanted to give me narcotic pain killers but my father said I didn't need them.  My mother started telling me I just had bad periods like her and that you have to just keep going anyway.

By college, I was taking 3 Aleve, 2 extra strength tylenol, aspirin, and ibuprofen together and was still doubled over in pain...unable to eat, go out, study, etc.  I was told it was dysmennorhea, basically I just have unexplained pain, and put on birth control.  It seemed to help for a few years although I would still get pain on occasion.  When the pain was escalating again, I was probably in my early twenties and it was the first time I heard endometriosis.  He changed the type of birth control, but I was sure it couldn't possibly be that because everyone else would not have missed that right?  After graduation the pain started to intensify again and I went to a normal doctor.  I was also having back pain and lower quadrant pains.  I was told I had PID and when I explained I had never had sex, I was told I was in denial and had it and needed to own up to it.  Another doctor told me I was not skinny enough to have endometriosis.  I proceeded to go from doctor to doctor, all equally unhelpful and insulting.

Endometriosis is the growth of a tissue similar but not the same as the endometrium (inside your uterus) outside the uterus.  It bleeds causing localized swelling and pain.  The body tries to scar over the "wound" and surrounding nerves/tissue try to protect the area while in pain.  Over time, these nerves get worn down and are always in pain, and the next adjacent set tries to protect the newly "wounded" area, causing a cascade effect as it spreads until it affects complete organs and systems.  As the body tries to "heal,"  adhesions (think scars) can form effectively gluing anything in the abdominal cavity together and distorting normal anatomy and function.  If left untreated, the damage can become permanent including losing the ability of normal organ function and nerve damage.

Eventually I was told I had depression and medicated for it.  It seemed right at the time because I was frustrated and wondered if I would ever feel "normal" again.  Except I went from medicine to medicine, diagnoses to diagnoses, without any improvement.  I went cold turkey on the antidepressants and anti-anxiety medicines and started to magically feel better.  I was so angry for having been shoved into a convenient box diagnosis again and again and medicated for conditions I didn't have...in fact the medication was MAKING me depressed because I did not have depression.  Eventually I went back to the doctor I first heard endometriosis from and was told the first honest answer, "I think it is what you have but do your own research and see what you think.  I have been wrong in my career about this five times...but if I am right, you will know when it's time for surgery."  He was right.

Eventually I had to be placed on continuous birth control to suppress my periods entirely to prevent pain.  Then I started having more and more digestive issues...it was to the point where I would be unable to move from my seat while teaching and have to run the restroom immediately after class or have an accident.  I went to the doctor who referred me to a GI specialist.  The colonoscopy was negative and I was told it was IBS.  Except the stuff that is supposed to help IBS never worked.  By that point my body was completely overriding the birth control and I had a period for three weeks, complete with pain so severe it took everything I could to not curl up and speak coherently.  Surgery was schedule for that summer.

Mild to moderate (stage I-II) endometriosis is what was expected.  I remember on the way to the hospital my mother said she just hoped I wasn't throwing my money away because she really thought I just had bad periods like her and they aren't going to find anything.  When surgery took nearly three hours longer than expected my parents started to worry.  When the doctor came out, he told my parents that I had very severe endometriosis, that my bowel and uterus had fused together and he almost had to call in a colo-rectal surgeon to resection the bowel, and that my pain was very real--that I had dealt with it for so long that I had normalized a tremendous amount of pain and not even he realized just how much pain I was in.

I remember coming out of anesthesia and reaching up toward the light crying out that it hurts and to make it stop, just make it stop.  They asked what the pain was on a 1-10 scale and I said 7.  They said that was better than when I was asleep because I told them 14 earlier.  I found out later that the dye they put through my tubes to check for blockages couldn't go through.  The doctor said if in the future I wanted to pursue children, he was willing to do IVF for me even if I wasn't married.  When he moved out of state, I found out from a reproductive endocrinologist that I likely cannot have children and that my anatomy a year after surgery was already distorted again.  Immediately after surgery I was put on Lupron Depot, a drug that caused damage to my joints and likely bone density loss...and never prevented my periods as it was supposed to even at double the dose.  I went back on continuous birth control and was referred to a pain clinic.

I also am dealing with nerve pain, possibly from surgery but more likely the Lupron.  I have to take Gabapentin to sleep or I get horrible searing burning pain in my outer thighs.  I also take 2400 mg of Ibuprofen a day.  Despite that, my inflammatory markers are still way too high which prompted autoimmune testing.  I also have high platelets and a thyroid that is all over the map.  I need to see a hematologist, but I'm just not willing to deal with it right now.  Even with this, if I have breakthrough bleeding or sometimes just randomly, I will have severe pain and need a pain medicine.  Likewise, if my bowel starts to spasm as it does if I eat a lot of spinach, I have the same result.

Not only am I unable to fulfill the one dream I've wanted my entire life, I have watched as one after another walks out of my romantic life because of it.  So now I can feel damaged and unwanted on top of it.  There are many foods I avoid because it makes pain worse and others I have to include because cutting some out lead to things like severely low potassium.  I still have bowel issues, just not as bad...but they are starting to progress again and it is likely that there was endometriosis left behind and I will need a bowel resection.  The problem is, so few people know anything about this disease--but there are MANY misconceptions even in the medical world--and there are less than 100 specialists who can do the proper surgery.  Worldwide.  A hysterectomy won't cure it because the disease isn't in the uterus but outside of it...and it certainly won't help the bowel.  I would have to have my ovaries taken and every microscopic piece of endometriosis taken to have a chance.  And I'd have to travel to see someone out of network for a surgery that won't be approved...but they'll approve a drug that is known to cause severe side effects.

No, I won't die from my disease and I am very grateful for that...but it has taken my dreams, my future, a good chunk of potential happiness, and my health from me for the rest of my life.  I get to live a prolonged suffering being told it's all in my head or I could have cancer instead...  Everyone thinks they know more than I do about it..."if you would just think positive," "if you would stop denying your feminine desires and let go of the career," "if you just did this diet," "if you would just lose weight,"  etc.  And when you try to explain it's not that simple, you get told you aren't trying hard enough, are being negative, that maybe it's all in your head, etc.

I'm also at an increased risk for autoimmune issues and am having symptoms but not specific enough to determine what it is.  I will never be able to go to the bathroom normally again...the bowel spasms and then the pain causes it to freeze, then starts again, etc.  Sometimes I will have spotting with the spasms.  So yeah, I'm alive and watching as my body deteriorates again knowing I can't afford surgery with someone who knows what to do and that I'm utterly alone in my fight because I'm considered "not wife material" since I can't have a family and have health issues.  I choose to move forward, and while I may have days where I am bedridden or stuck in the bathroom or up all night curled into a ball, I still fight to get up and be as normal as possible.  I refuse to stop living my life no matter how frustrated, sad, or angry this disease makes me; it will not become an excuse preventing me from living my life as I wish to live it.  I'm a fighter, but I am so tired...and the bad thing is this is far more common than people know.  It took over twenty years to get diagnosed...from age 13 to 34.  And most people still don't know what it is and how disabling it can be.

And the scariest part is how many other diseases like this are out there, devastating lives and getting not attention...so I challenge you to be courageous and speak out about what you know that is going unnoticed, underfunded, and misunderstood.  If you can donate, do so but at least share your journey with others so sufferers are not living in isolation and perhaps one day our voices will be heard.

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