Wednesday, February 24, 2016

My Endometriosis Story {Part5} - Closing Out

I was diagnosed with Stage 4 Endometriosis on September 16, 2015

I talked a little (well, really, I ranted) about it in this post 
And, here is Part 1, and here is Part 2, and here is Part 3, and here is Part 4

I'm rounding out My Endometriosis story with a round up of little tid bits.  Either things that didn't fit in any of the other posts, random stuff or personal information that I didn't feel comfortable sharing at that time.  

March is Endometriosis Awareness month.  The time frame of March 3-9 is Endometriosis Awareness Week. 

During that time, Educational Anarchy will be sharing one story per day from others who suffer from Endometriosis to help spread awareness, acceptance and hope.

If you would like to share your story, please contact me for the specifics.  I'd love to share your story!

There are no Endometriosis Awareness events happening in the Chicago-land area (at least none that the Google fairies could locate for me) at this time.  My hope is that with increased awareness, events such as this one in California will become in major cities across the US.  An opportunity where women with endometriosis can collectively come together and share their experience, strength and hope.  Where specialists can come to speak on their areas of expertise.  A place where, I, as someone with endometriosis, can go and feel like I am not alone and become educated on advancements in not only medical treatment but also holistic treatment.    

Random Stuff:

Insurance - I love it.  I really do.  I just don't like it so much, sometimes.  I am fortunate to be covered under major medical insurance and have the freedom to see any doctor in its network.  BUT, there is always a but, right, my treatment is not covered...easily.  Here's what I've had to deal with - in 2015 we were covered under Insurance Provider A.  And, Insurance Provided A covered my first Lupron injection and the Add Back medication with no issues.  I was even able to get the script filled at my local pharmacy.  Then, month two rolled around and now, with no warning or notice, they are refusing to re-fill my script at the local pharmacy.  I'm on a time schedule and need this injection quickly.  (Side Note - Insurance Provider A is being replaced with a different insurance provided for my husbands place of business as of the end of December 2015.  December 2015 was also the month that I tried to get my script re-filled).  I am now being told that it's a maintenance drug that needs to be filled through mail order and sent to my doctors office, they cannot send it to me. This was on a Friday and my appointment was scheduled for the following Tuesday.  They don't ship on weekends. AND, they need to get documentation from my doctor that this medication is even necessary.

Did you know that stress is the main contributor for endometriosis "flare up"?

Long story short, I was able to get them to overnight the medication to a local pharmacy they share a name with so that I could pick it up and take it to my appointment because they were not willing to guarantee delivery at my doctors office within their business hours.    


Let's move on to Insurance Provider B (aka new 2016 insurance carrier).  Given the bull shit that I went through in December I knew that with this insurance change I needed to be on the ball come January if I wanted to get my injection on time.  So, as on January 4th, I started calling my insurance carrier to see what needed to be done to make sure I'd get my treatment.  

It's not covered as a pharmacy drug and they cannot fill the prescription

I'm sorry, excuse me?

I go on to explain that I've already had two injections and am on a treatment plan that requires me to have six total.  Luckily, I get transferred to a very helpful and informative individual who was able to help me navigate my new insurance's rules and regulations regarding the administration of my injection.  

It was true, they would not fill the script.  My doctor's office needed to manage the filling of the script because they would be administrating it and technically it would be an office visit.  

Loop holes, people.  Loop holes.  

So, with the help of the lovely gals at my doctor's office I was able to get my script filled, but because it was an office visit not a re-fill of a script I had to pay full price to meet my deductible.  

Fun times!  NOT.

This is what flex spending accounts were designed for.  

Luckily, the manufactures of Lupron, the injection that I'm receiving, offer not only a patience assistance program for those who are in financial need, but also a savings card (this is what I have), and offers you a rebate of up to $150 per script you fill with them.  Though I pay out of pocket now, I get rebated everything but $10 for the script.  I want to make this information availible, because not many people know about it and are angry at the cost of the treatment.  If you call Abbvie, the drug manufacturer, there is financial help out there for you 800-222-6885.

Stress - I don't live a stressful life at all.  I'm just a stressful person.  

Uncontrolled stress is a contributing contributes to endometriosis symptoms, here's the study.   

Dealing with my insurance company on a Friday evening to guarantee that I'll get my medication on time, when up until then I had no issues getting my prescription filled - That's stressful.  

Having my insurance carrier change mid treatment and not knowing what, if anything will get covered - That's stressful

I've eliminated many of the things that stress me out.  And, those that I cannot eliminate, I try to manage to exposure to.  

Stress exists, it just does.  But, I have the ability to choose what I will allow into my life.  And, right now, it ain't much.  I've turned down freelance opportunities, volunteering at my kids school, story time at the library, meeting friends for dinner or lunch, taking on additional responsibilities, sporting tournaments, hosting holiday or birthday parties - not because I don't enjoy doing those things, but because I wasn't willing to endure the stress that taking any one of those things on would cause me.  It's not worth it right now.  And, that's the key, it's temporary.  It's not like I will never, ever volunteer at my kids school again.  Just not right now.  It's not like I'll never, ever take my toddler to story time at the library again.  Just not right now.  Because you know what, I cannot unhurriedly leave my home prior to 10am.  I just can't right now.  And I'm owning that.  And I'm okay with that.

If I have these external stresses kind of at bay, how do I deal with my stressful self?

I meditate

I drink copious amounts of Oat Straw tea

I take Cod Liver Oil and Vitex supplements, daily

I get a massage once a month

I go to a salt cave once a month

I see a chiropractor regularly

I exercise (I walk up to 2 miles a day and do my physical therapy exercises)

I eat healthy (I follow the anti-inflammatory diet as outlined by Dr. Weil, which was given to me by my family doctor who is an Integrative Doctor)

I sleep with a weighted blanket, which helps with my insomnia 

I go to bed when I'm tired

I am the proud owner of not only a heating blanket, but two heating pads.  They are my best friends.  

I isolate myself when I'm not in a good mood (I hang out in the front room in my recliner with my heated blanket and an adult coloring book or I use one of the many "calming" apps I have loaded on my phone)

I say "No", a lot

I stay away from drama (Not my circus, Not my monkeys)

Misconceptions - Endometriosis has no cure.  This means that I will never, ever be rid of it.  Even after the surgery to remove the deposits.  Even after 6 months of chemo.  They are band aids.  Ones that I am truly thankful for, don't get me wrong.  And, I do consider myself lucky - I was diagnosed with endometriosis at 39, after have three healthy boys.  But, there is a reason that my boys are 16, 11 & 3.  I didn't realize that I had endometriosis and that it was contributing to my fertility problems.  I didn't even know that I had fertility problems.  

Periods aren't suppose to hurt.  I never knew that.  

A hysterectomy will not "cure" endometriosis (neither does a pregnancy, there is no cure). 

Severity of endometriois diagnosis does not equate to severity in pain or symptoms.  

Endometriosis cannot be diagnosed visually.  What this means is that surgery is necessary for accurate diagnosis. 

Endometriosis can spread and compromise other organs (such as your bladder or colon) or other areas of your body.  Mine caused severe deposits on the ureteral sacral ligament which effected my ability to walk. Who knew?

There is no cure for endometriosis.

I am accepting of this fact and I realize that this is my journey.  I also know that I am not alone in it.

                  Endometriosis Awareness




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