"There is the mud, and there is the lotus that grows out of the mud. We need the mud in order to make the lotus," Thich Nhat Hanh.

Tuesday, February 9, 2016

My Endo Post from Facebook

This was my Facebook post tonight.  It was going to be a short status but it turned into a blog post, so it needed to go here as well.
All this misinformation in the media about #endometriosis is bringing up so many feelings; so many memories.

Memories of...

A scared 17 year old girl in a gynecologists office for the first time wondering why she's hurting so with her period.

That 17 year old girl wondering if she really is making up the pain; wondering if she is really crazy.

The same girl struggling to finish high school.

A devastated young woman having to drop out again and again out of college because the pain was too bad and no medications could really control it.

A woman watching life go by on her couch, seeing friends and family go on to bigger and greater things whilst she is stuck with a heating pad watching "Law and Order" reruns with her cat.

A woman who is isolated and lonely as relationships fail under the weight of the disease.

A woman scarred by countless surgeries.  Scarred by rapid weight gains and losses because of medication side effects.

A woman who feels like a burden to her family because she cannot hold a steady job.

A woman who doesn't feel like a woman anymore but a gutted fish since having her reproductive organs taken out save one ovary.

An barren woman who still breaks down at the sight of kids playing baseball.

A pain free woman who still lives in fear that even though the endo was excised and the adenoymosis was removed along with her uterus, the pain may return at anytime.
A very thankful woman that has had and has amazing people in her life, loving cats past and present, understanding teachers and professors, great online support groups, the most skilled endo specialists, and something deep inside that, even though I've wanted to and have come close, hasn't allowed me to give up and stop fighting.  Thankful that #endo has not been an issue for a couple years.

#Endo has tried to ruin my life.  I have adapted.  It has left many, many scars--visable ones and invisible ones.  It has taught me a lot.  It has brought me my best friends.  It helped me meet my husband. It has devastated many parts of my life and has totally changed my life plan.  I've mostly made peace with that.

#Endometriosis has no cure.  Like all things, some treatments work for some and not others.  The best bet is early excision with specialist, which thankfully are becoming more and more available.  But no cure means NO CURE.

This was longer than I thought it would be, so if you read it all, I appreciate it.  It is a very brief glimpse into my #endo battle from 2011-now.

Sunday, February 7, 2016

Since I've Been Gone...

My New Year's Resolution was to start blogging again, and before I knew it, it's February.

It has been a while.

It has been too long.

After Alex passed away, I sank into a depression.  A long depression.  I knew I was going to, but it was also disguised as migraine/head pain, so it was hard to tell whether my needing to curl up and not move was head related or depression related.

Eventually I found a grief counselor and that helped.

I got my headaches/migraines/the Anvil Chorus mostly under control.

I started working at a local soccer/football club.

A new cat found me.  Her name is Ziyal Aurora.  That will be a story to tell!

Tim got here at the end of September.

We've been settling in as a family--adjusting and simply enjoying FINALLY being together.

So now things are a little more routine, I hope to return to blogging.  I've missed it.

It's good to be back.

Here's our family right before the Holidays.  

Monday, September 22, 2014

Alex Has Passed Away

A Beautiful Girl, Loved Forever
Alex's Surgery History:

Pre-First Surgery Post

First Surgery

First Surgery Pre-Op

Pre-First Surgery Post

Second Surgery Post

Her head lump came back, and this July during her annual exam I talked to the vet about it.  The vet said that she couldn't help Alex, but we could take her to an oncologist down near Minneapolis-St.Paul.

After the wedding, Tim and I took Alex to the specialist.  The vet there diagnosed her with mass cell tumors, stemming from the ear, and spreading.  It had gone into her lymph node.  During her spleen ultrasound, nothing was seen, but the blood work indicated that there were tumors in there.

We were given options, including chemo, surgery, and a lot of different medications.  After talking it over, Tim, Alex, and I decided to put her on prednisone and a couple of other OTC meds and let her be happy at home for as long as possible.

She was tolerating meds pretty well, but last week she really began to itch at her head lump.  Bad enough where it was very bloody and very torn up.  She was suffering.  I made an appt to see the local vet Thursday afternoon.  My mom came with me.

The vet said that she could give us antibiotics and a collar to prevent her scratching, but we would be back soon.

Alex let me know it was time.

The vet let us use the exam room as we waiting for Tim to get home and we were able to have one last video call together.  He was able to say goodbye.

I held Alex as they gave her the injections on the exam table.  I talked to her between sobs, telling her that she would be out of pain, she was so loved, and that she will always be loved.  I told her we hoped that her next life would be so much better since she helped so many people and brought so much love into the world.  I told her I would miss her.

She died September 18, 2014.  She was 10 1/2 years old.

That night I bawled and curled up with her towel.  I bawled over the weekend.  I have never been so sad and heartbroken.

My kitty girl was gone.  My best friend was gone.

We thought we had more time.  We hoped that she would hang in there until Tim got here.

I miss her so much.  Tim misses her so much.  Family and friends miss her.

We get her ashes back in a few weeks.

With the hysterectomy stuff, I know how grieving goes.  This is just so much more and so much more pronounced.

I just want her back.

I'm so glad she's not suffering anymore, but I want her back.

Tim wants her back.

We want our family whole.

She was so loved.  So very loved.

Saturday, August 30, 2014

I'm Married!!

Tim and I were married on August 5th.  It was a fantastic day and things were wonderful and our families had a great time.  It was just his family and mine; his flew over from the UK to be here and my family had a great time hosting them.

Tim left for the UK on the 14th, and the paperwork to get him here to live and work legally is in.  We were given an estimation of 6-9 months for it to be processed and approved.  Alex and I can't wait until he's back.

I'm going to try to get back into blogging so more wedding stories will make their way on here.

Tuesday, April 15, 2014

I'm Back!

Holy cow, I haven't blogged in forever.

Since I last posted

  • I came back from England
  • We're getting married this summer
  • My bro Justin got married in December
  • I had surgery February 20th
    • No endo was found but my pelvis was pretty much stuck together with adhesions
  • My pelvic pain hasn't been a problem since
  • I'm back to work
  • Alex is awesome, she turned 10, and wants spring
It's amazing how busy life got once I got back to "normal."  Work and wedding planning and hanging out with family and friends, and also cleaning!  I can vacuum now without pain!  

I apologize for being absent.  I will try to post details about my surgery and I know some of you will be wanting to know about our upcoming wedding!

Monday, December 2, 2013

Unsung Lullabies Radio Show

Whilst I was in England visiting Tim, we did a Technical Difficulties radio show live with one of the authors, Janet Jaffe, of Unsung Lullabies on November 29th.

It was a very tough, emotional show, but it was worth it.

Please have a listen here.

Tuesday, October 15, 2013

I Saw My Endo Dr

Thursday of last week I went to a local gyn to make sure nothing was obviously wrong.  I got there and he said since I have dealt with endo so long, what did I want him to do.  I said I needed an exam and a shot of torodol if possible.  So he did an exam, didn't feel anything wrong.  Then I got the shot.  It helped for a little bit.  The doctor then told me that because of how much pain I was in I needed to call my endo specialist to make an appt asap.

I made an appt for Monday morning, so my dad and I went down to the Cities on Sunday.  We found a neat little Thai place to eat at, and then went back to the hotel and watched baseball.  I tried to go to sleep early but even with ambien, heat, and ice I couldn't sleep because of the pain.  So I caved and took some Vicodin.  That helped with the pain but then I was wired from the Vicodin.  I eventually fell asleep tho and got a few hours in before my appt.

At my appt, he did an exam and also did not feel anything wrong.  So then he says my endo is probably regrowing again.  I mean, I haven't had surgery since 2011 so it has been a while (thankfully!).  So he gives me three options:  increase my Danazol, try Lupron (oh hell no), or surgery.

I elected to go with option number one.  He said there's a 50-50 chance that the increase will work within a month.

A month.  You know, when I leave to go visit Tim.

He also gave me more Vicodin.  But if it doesn't work, there's a high probability of more surgery.

I'm overwhelmed.  I'm in a lot of pain.  I'm so frustrated.  I'm missing work.  I'm missing family stuff.

Tuesday, October 8, 2013

Pelvic Pain


A week ago Sunday, my pelvic pain decided to flare up.  At the time I didn't think too much of it, since I do have the occasional flare up.

But it didn't stop.

That Friday I emailed my endo doctor, saying that something is going on.  I got the reply that he was gone til Monday.  I also put in a request for more Vicodin, since I was needing to take them more and more frequently.  I got an email back saying that I had just filled an rx last month for it.  Um...no, I hadn't since January.  I had enough to get me through the weekend (which I spent on the couch with my heating pad) and we got it all sorted out on Monday.

I talked to my endo specialist on Monday as well.  He says to wait another week and then if the pain is still there to make an appt to see him.

Is it scar tissue?  Is it endo?  Do we need to up my Danazol?  Do we need to change something we're doing in PT?

My PT worked me in for an appt Monday evening.  Today, Tuesday, I missed work.  I couldn't get my pain managed in a way that I could work.  I have another PT appt tomorrow.  I confessed to her that I was getting really worried about my pain and afraid that it was going to hurt like this again like it used to, but she said she's confident that it would never get to that point again.

I just want to work.  I go to the UK next month.  The next month I have my brothers' wedding in Florida.  I need this pain to stop.

Friday, July 26, 2013

Today Was Better

Today was so much better.  I woke up and the first thing I noticed was that my head stabbing was gone.  I quickly got up, showered, ate, and went to work because I didn't know how long my head would behave.

I made it through work and then some errands afterward.  I made supper, and then my head started to hurt and I fell asleep during the Braves game.  When I woke up I hoped that I wasn't snoring loud enough for anyone outside to hear me through the open window.

I think yesterday's blog post helped me feel like I got some stuff out so I could cope better with the pain and having to miss out on things.  I got used to being "normal" for the most part and I didn't want to lose that.  I still don't.  But now I'm not fighting it.  My health can change like the weather.  Everything is in change.  It's a lot easier to just go with it than to fight what it is happening.  I had forgotten that.

This weekend I want to get caught up with stuff around the house, and do my nails.  I haven't done my nails in over a week.  That's how crappy I have been feeling.  Now just to decide what I want to do with them!

So yes, a much better today, and I savored it.