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




Tuesday, February 16, 2016

My Endometriosis Story {Part 4}

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


Of course I did research.  Traditional and natural approaches to managing endometriosis.  I reached out to a family member who also has endometriosis, and is a medial professional, to get her advice on everything.   

And, in the end, I decided on utilizing both for my treatment and long-rang therapy.    

I started an anti-inflammatory diet, as outlined by Dr. Weil, on November 1, 2015.  I've maintaining a mostly vegetarian diet for the duration of my traditional treatment.

received my first Lupron injection on November 24, 2015.  Lupron is a hormonal chemotherapy and I receive a once a month injection.  The medication slowly releases into my blood over a one month period.  
There are many differing thoughts on Lupron's effectiveness in treating endometriosis all over the internet.  All I can say is, I chose this method of treatment because I thought it was the best option for me.

Additionally, I am taking Norethindrone, which is an "add back" (used to add back some progesterone into my system, which the Lupron is halting production of) that assists with the side effects of Lupron.  

Which, might I add, I've experienced pretty much all of them
redness/burning/stinging/pain/bruising at the injection site,  CHECK
hot flashes (flushing),  CHECK
increased sweating,  CHECK
night sweats,  CHECK
tiredness,  CHECK
headache,  CHECK (during certain days of the month)
upset stomach,  CHECK
nausea, CHECK
diarrhea, CHECK
constipation, CHECK
stomach pain, CHECK
breast swelling or tenderness,  CHECK 
acne, CHECK (hello hormonal acne, I hate you)
joint/muscle aches or pain, CHECK
trouble sleeping (insomnia),  CHECK
reduced sexual interest,  CHECK
vaginal discomfort/dryness/itching/discharge,  CHECK  
swelling of the ankles/feet, CHECK 
increased urination at night,  CHECK
dizziness,  CHECK
breakthrough bleeding in a female child during the first 2 months of leuprolide treatment,  CHECK 
weakness,  CHECK
chills,  CHECK
clammy skin,  CHECK
skin redness,  CHECK
itching, or scaling,  CHECK
depression,  CHECK
memory problems  CHECK

The good thing, though, it's not all of them all of the time.  I can count on that as a small blessing.  

So, from a natural approach I went with my go to person regarding herbals and that's Susun Weed.  I scoured her book The Menopausal Years for information on dealing with different symptoms.  I settled on the use of Oat Straw tea (which I drink 2 glasses a day of, 3T each) and Vitex (which I take 2 400mg capsules of daily.  Additionally, I take Cod Liver Oil.  

So, why Oat Straw?  Susun explains more here.  I felt that I needed something to help stabilize my mood.  As I was tracking my symptoms following my first injection on November 24th I noticed some pretty wicked mood swings and some pretty low days.  Oat Straw also helps with bone strength (a side effect of Lupron is brittle bones), stabilized blood sugar (with a change in my diet, I wanted me make sure that I wasn't spiking or crashing), relieve depression and emotional uproar, reduces frequency and duration of headaches, eases bladder spasms and vaginal dryness.  

So, why Vitex? Susun explains more here. But, specifically she shares in her book The Menopausal Years that daily use of Vitex will "reduce and eliminate endometriosis and uterine fibroid".   But, as shared in the linked article, patience is needed.  Daily use for two or three months will result in improvement of symptoms. Given that endometriosis is not a curable disease, I figured I had nothing but time on my hands and why not give it a try.  Additionally, it helps with hot flashes and dizziness and helps maintain an emotional calm.  All things that are side effects of Lupron.  

Cod Liver Oil?  Well, I've been taking it for years.  I wasn't going to stop now.  

Stress is also a contributing factor.  So, once a month I get a massage and once a month I attempt to get to a salt cave for a session.  I meditate daily and do yoga twice a day.  I've also examined what are necessary actions that I need to do in my life.  Work?  Yes.  Contract multiple jobs?  No.  Volunteer?  Not right now.  Weekly commitments? Nope, not right now.  Doing things that does not bring me joy? Nope.  
I say "no" a lot more now.  

I've also started exercising regularly. Simple things, like walking daily and continuing my physical therapy exercises at home.   

The idea is to have these lifestyle changes firmly in place so that once my traditional medical treatment is done (my last injection is in April), I can continue to manage my endometriosis in a natural manner, with, hopefully, a positive outcome.  I'll never be cured of endormetriosis, I know this.  But, I don't want to get to a place where I cannot enjoy life because of it.  If that means that I need to change how I eat and exercise more, then that's what I'm going to do.          

Tuesday, February 9, 2016

My Endometriosis Story {Part 3}

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

So, after my follow up appointment with my OB/Gyn I was recommended to a Gastroenterologist.  I also took it upon myself to find a Urologist.  Endometriosis has the ability to spread outside of the uterine wall area to other parts, and organs, nearby. Additionally, I had been trying to get in to see my Orthopedic doctor to get my knee checked out because of my issues with walking, standing and sitting.  I had assumed up to this point in my journey that the pain was caused by a knee injury that occurred in 2014.  After my procedure in September, though, it became apparent that the issue was not my knee, rather the inflammation that was occurring from the endometriois.  To err on the side of caution though, I wanted to see my Orthopedic doctor.  

In the process of finding a really awesome gastroenterologist and urologist (who also is a gynecologist - important, to me at least, in describing my symptoms and my endometriosis diagnosis) I had to switch to a different orthopedic doctor due to limited appointment availability (he decreased his hours, which didn't really work for me).  

It's a wonderful thing to be heard.  For what you are saying to be taken seriously.  I was nervous seeing each of these new doctors.  First up was the urologist - my endometriosis had not spread to my bladder.  Other issues were found which are being handled with medication and pelvic floor exercises and is in a manageable state right now.  Next up was the gastroenterologist - after a very thorough exam a colonoscopy was scheduled (which came up clear - no endometriosis, no cancer).  Lastly was my new orthopedic doctor - after an exam, x-rays and an MRI, more physical therapy was in order.

All three doctors agreed that the inflammation from my endometriosis contributed to all of the symptoms I was having, whether is was my bladder, colon or knee.    

So, if inflammation is the cause, and the root of that cause is being managed, how do I decrease my inflammation?  Lifestyle changes.  Mainly, diet and exercise.  

And, both of these changes I put off for over a month, because I just didn't want to deal with either in that moment.  I'd been poked and prodded and put under.  I needed to do some research of my own before I took on any more, and I'm glad that I did.