Tag: endometriosis

“I’m a little messed up.”

Hurry up, but wait.  Relax!  Keep tracking though, take good notes.  Have fun!  Don’t worry about this right now.  We’re “on a break”.  Ross, anyone?  But did I take my temperature today?  Log that in the app.

I thought the mood swings would stay away so long as the needles full of lady feelings stayed on top of the fridge and away from my belly/butt/arm. Wrong.

While this is the “summer of fun” and we have technically put our IVF worries concerns thoughts “on a shelf way up high where we can’t reach it” (courtesy of therapy), we know that we still have to be wise.  If we go back to Jackson to our FE for IVF, we want to have the best protocol targeted to our needs.  In order to get that on the first go ’round, we need information.  Lots of information.  Lots of data points, that have to be collected ahead of time.  Three months ought to do it, right?  Good.  We have eight.  Five post surgery, by the time its all said and done.

Ideally, we won’t go back to Jackson.  It will just *happen*.  But we’ve noticed some things with me that may be signaling that my body just won’t *happen* on its own.  It still may.  I’ve not lost all confidence in my parts.  I just have realistic expectations, I think.  Maybe.  Is anyone else confused?

Here are things I know for sure.

  1. We really want to be pregnant.
  2. I still have some lingering biological issues.
  3. “Relaxing” shouldn’t be this much hard work.
  4. I’m over the mood swings.
  5. We are not pregnant.

I have warred so much with myself over the last month, and increasingly over the last two weeks.  I bounce back and forth between states of being.  First I’ll stay off of the blogosphere (accept for sweet friends who’s stories I am invested in, y’all come right to my inbox), be still and know, live in the now, etc.  Then I’m getting restless, and I need to have my sad time, reading other stories of frustration, finding solidarity with women like me, both those that I know personally and those that I feel like I know thanks to the great wide interwebs.  After that, I usually binge on encouragement.  I am a fiend looking for wisdom and encouragement from Jesus, King David, Paul, Hannah, Rachel, Sturgeon, Lewis, Dumbledore, Aslan, Gandolf, Charlotte York, Pheobe Buffay, Amy Farrah Fowler, my best friend(s), all of the smartest and wisest and most encouraging people I know and don’t know and aren’t real.  Rinse, and repeat.  I am wiped just thinking about it.

So today, I’m going to cycle back to being still and knowing.  I’m going to take my vitamins with my red raspberry leaf tea (with ginger), when what I really want is a whiskey, neat with a twist.  I’m going to belly breathe my way through a lower back targeted yoga session instead of channeling my inner Grinch.  I’m going to laugh.

You’ve all been there.  Don’t tell stories.

I’m going to keep reminding myself that He knows my babies’ birthdays.  Every one of their days is planned even now.  I am going to be quieted with His love, and know that he will listen to me scream tomorrow.  Peace be with you, fellow sisters in the struggle, who are in the midst of one of these fertility-minded cycles of crazy.

My Therapist Said…

This is the summer of fun.  Try new things, make it a point to spend time together, take mini-vacays, laugh a lot, and relax.  She said we need to relax a lot.

Therapist?  Therapist.

For the last few months, Mister and I have been seeing marriage counselor.  Are we in crisis?  No, not at all.  However, with the amount of stress and obstacles we were/are facing this year, we recognized the fact that we could turn a corner and meet crisis quickly.  We knew that our stresses would not be decreasing in 2015.   If anything, they would be increasing, building on each other. We decided that we would rather use counseling to help us reinforce our relationship as we hit small bumps, rather than as a crisis intervention after things explode and we’re looking at wreckage.

We see the same therapist as individuals and as a couple, and while it’s taken some adjustment, it’s been one of the best things we’ve done.  With the help of some friends, we found a great therapist that is of like Spirit, and is helping us reinforce and enjoy our marriage.

While we were researching fertility clinics, we noticed that several required so many sessions of “infertility counseling.”  The clinic we ultimately chose did not require this, but the more we thought about it, the more it seemed like a good idea.  This whole journey of chronic pain and infertility stirs up so many feelings of inadequacy, hurt, self loathing, anger, confusion, depression, constant frustration… And that’s just on my end.  Mister is dealing with his own feelings of helplessness, frustration, depression, and the stresses of being our provider.  

There is a lot of feelings swirling around in one house.  We aren’t perfect.  We don’t always handle conflict or differences of opinion in the most respectful way.  None of that was going to get any easier as we get closer to purchasing a vehicle (done), surgery (done), physical therapy (in progress), purchasing a home, IVF, and a crazy busy season with both of our jobs.  Marriage counseling was not an admission of defeat for us, but rather a proactive defense against the attacks we know are coming.  

For a long time, I assumed marriage counseling was only for the “really rough” marriages.  All the stuff that seems to be crisis-centric. I also assumed that I would never do IVF.  I assumed I would be a teacher, and never a small business owner.  I was wrong about a lot of things.  Therapy is not something to be ashamed of, it doesn’t mean we’re broken.  I means we refuse to be broken by our circumstances.  As difficult as it is to talk about the inter workings of our relationship, the ugly, the hurt, the parts that no body else sees, it’s worth it.  

If marriage is hard, life is hard, and you are seeking counseling, I applaud you, and I blindly and silently encourage you.  Crisis or not, you are fighting against circumstances that seek to break your commitment, and it can be a lonely battle.  If you are managing without therapy, bravo to you.  That doesn’t mean your marriage journey has been a cake-walk, just a different walk, in different shoes, made by different people.

We are committed to enjoying our summer together.  We’re running a 5k together.  Mister is teaching me a lot regarding the studio side of his photography.  Our small business is growing.  We’re both excelling at our “real” jobs.  We have put a date on our focus on fertility worries and concerns, and until that date, it is not a central part of our lives.  We’re spending time with some of our most favorite people.  The next couple of months will be fun, relaxing, and not a giant stress ball of a science experiment.  

Do I hope that is summer brings us news of an addition to our family?  Duh.

Will I be sad if that doesn’t happen?  Probably so.

Will we be ok, regardless?  Yes.

The Almighty brought us to one another (through Southern Miss football, a newspaper, and sorority sisters), but we wake up and make a choice each day to be married.  To mirror the love of Christ to one another, no matter what our circumstances bring, no matter if the other one’s being a total grouch (sometimes this is an hourly choice, I can be a real Cranky Pants).

Here’s to Team Bush’s summer of fun!  May we come out of this season more satisfied in our marriage and our God than ever.

Remission

“Good morning, Mrs. Bush.  You are endometriosis free.”

I don’t normally appreciate any greeting, in person or electronic, before 8:00am.  Particularly any that refer to me as formally as “Mrs. Bush”.  I also don’t normally hug and cry in front of grown men I’ve known for less than 36 hours.  Friday, April 17th was a weird day.

It’s been ten years since I was last in Atlanta.  Ten years ago, I was doing one of my first and biggest “grown up” things by hopping on a plane with my best friends and spending the next 3 weeks visiting friends in Germany.  While at the airport in Atlanta, I got super nervous, started pouring sweat, and then emptied my stomach into three (yes.  Three) “turbulence discomfort” bags, all before taking off.  I’ve done a lot of growing up since then, but my somatic anxiety tells haven’t changed one bit.

Last Wednesday, after meeting my parents at Big Bad Breakfast in Birmingham (excellent recommendation, Brittany!) for my last real-food meal (for a whole week), we hopped in Favre (my sweet new Southern Miss gold Jeep) and headed to Atlanta for my pre op appointment with the Center for Endometriosis Care.

I was given the opportunity to enroll in two separate studies regarding endometriosis, with one aiming to genetically link endometriosis and infertility.  All of the “awareness” noise we make is meaningless without action behind it.  I’m very excited to be a part of the action.  

After a conference with my wonderful doctor (he likes to meet you formally before he meets you on his exam table), I had a rather painful exam.  Doc diagnosed me with pelvic floor dysfunction.  I’m still learning what that is and what that means, but here’s the short (and Internet appropriate) version:  my pelvic muscles have been spasming like crazy for a long, long time.  When a part of your body feels pain, it contracts.  This part of my body has been feeling a lot of pain, for a long time.  It keeps contracting, over and over.  Now, it has a hard time knowing when that’s appropriate.  This is one of the main causes of my daily pain with things that shouldn’t be painful.  Next month, I will start a very specific form of physical therapy to help reprogram my muscles.  More on that at another time.

I was sent to our hotel with a lovely gift bag.  Inside was a humongous bottle of Miralax, some Dulcolax, lots of Gatorade, and a Fleet Enima.   This goes to show that with proper southern hospitality and etiquette, a colon cleanse can look like a spa gift basket.  Sounds like a party, right?  It wasn’t that bad.  Not something I’d actively choose to do on a Wednesday night, but I know it could have been a lot worse.  

As mentioned above, my anxiety lives in my tummy.  Occasionally, it pops up to make itself known to everyone else.  My anxiety heaves made their appearance once I was in the pre op area, putting on the awful gown and getting my IV Thursday morning.  More props to my nurse for being Johnny on the spot with the bag and ear sticker. Considering I had just emptied the contents of my entire digestive system a few hours earlier, there wasn’t much to put in said bag.  They started giving me ALL of the anti-nausea and anti anxiety drugs, which was super.  Shortly after, my doc came in, cracked a few jokes, and then did the most wonderful thing.   He took my hand and put a hand on Mister’s shoulder, and he prayed over us before surgery.  After a kiss from mama and daddy, they gave me the real good stuff, and I woke up a few hours later with searing pain in my right side.  This was odd to me, even very drugged, as 99% of my pain has always been on the left.

I have very vague memories of the remainder of Thursday.  I know I had a pain medicine pump with a button.  I know that button didn’t work for the first few hours, and Nurse Melinda was very impressed with my pain tolerance.  I know I made mama text Student Doctor Bestie and ask her why I could taste everything they put in my IV.  I know I hated those leg compression things, almost as much as I hated the hospital gown.  That thing went as soon as I had the faculties to sit mostly upright with some assistance, and on went my leopard print gown with matching robe.  Leopard is a neutral and is flattering on everyone.

I was informed later Thursday and again on Friday morning what all happened on the operating table.  I had a cystoscopy and a hysteroscopy (a look around inside my bladder and uterus, respectively), and those areas were clear and free of endometriosis, fibroids, or polyps.  I had three small incisions:  belly button and one near each hip, where my doc excisised all the endometriosis he found.  I had a presacral neurectomy, and a surprise appendectomy.  Turns out, my appendix had endo on it, and was “glued down” to my intestines.   Doc didn’t like how it looked, he was in the neighborhood, so PEW PEW!  There it went.  I’m sure God gave us those things for a reason, but I can’t say I miss mine.  This explains the pain on my right side when I woke up.

The presacral neurectomy has been the biggest adjustment for me, so far, and was my biggest obstacle in the hospital.  Nerves are important, and the ones down there are in charge of a lot of stuff.  It took me a solid 24 hours before I regained the noggin to muscle control that one needs to go to the bathroom.  It took some serious focus and a catheter at 3:00 am before my body figured out how to empty my bladder all by itself.  I got a high five from Nurse Melinda once I did figure it out, though.  Friday morning, my doc came in and gave me the only news worth waking up at 7:15 with a catheter taped to your leg to hear.  I am endo free.  He got it all.  The chance of recurrence (regrowth) is less than 5%.  My endometriosis is in remission.  The good news didn’t stop there.  Doc had originally told us that we could start IVF a month after surgery, so we scheduled our first cycle to start in June.  However, he has encouraged us to wait 3-4 months.  Not because of healing time or because I wouldn’t be able to handle the treatments, but because he thinks he has fixed our problems.  He has encouraged us to give the good old fashion way of conceiving a few months, because he believes it to be possible now.  He hugged me again, blessed us both, I cried, and then Mister took me home to nap where nurses wouldn’t bug me or poke me.  Saturday we went to Steak and Shake where I had a cookie dough milk shake, and on Sunday, Favre brought us home.

I went back to work yesterday.  I’ve gotten a lot of surprise about returning so soon, but I promise, doc said I could sit at my desk and do stuff.  It helps that I love my job.  It helps that my property is small, and I can plan my day around specific needs (like being still).  It also helps that I have a rock solid work family.  I work in a relatively new company that makes a point of rallying around each other and supporting their managers and properties in any capacity.  I knew this on the professional level already, but they have gone above and beyond anything I expected with this surgery and potential IVF.  I have personally heard from my direct supervisor, my counter parts at other properties, the president of my company, and a few of the owners, multiple times over the last week.  Each time they have made it a point to be encouraging, supportive, and to make this time as easy as possible.  They didn’t judge me when all the feelings came out and I cried after a simple “safe travels”, either.  

I am still sore and moving a little slow.  I probably will be for another week or so.  I come home from work and immediately sit down, with the intentions of doing nothing for the rest of the day.  So far, that’s working out great.  We have wonderful friends bringing us meals while I continue to heal and figure out what “normal” is.  I have hurt every day for so long, I have no idea what endo-free life is going to look like in practice, but I’m pretty excited to find out.

While this month has been immensely stressful, it has been full of encouragement and hope.  There are a few uncertains still, and I have a feeling that pelvic floor therapy is going to be another adventure.  We are healing.  We are encouraged.  We are hopeful.  We are well fed.  And we are His.  To God be the glory, great things He has done.

Big Plans, Set Dates

Hurry up and wait.

That has been our lives, it seems, since Christmas.  Lots of waiting.  Waiting for phone calls from doctors, waiting for paperwork, waiting for insurance,  etc.  We’ve still got some waiting to do, but there’s now a light at the end of the tunnel.

Excision surgery is set for April 16th in Atlanta with the Center for Endometriosis Care.  A plan of procedures has been made, my employers have approved the necessary leave time, and our insurance companies didn’t laugh at us.  I will be having a cystoscopy, hystroscopy, laparoscopic excision of existing endometriosis, hysterosalpingogram, and a presacral neurectomy.  

Those are all great big med school words, and I had to google the last two.  As big and scary as it sounds, it will be three small incisions to get in, all of the major work happening under the skin. Two of these procedures are necessary for us to start IVF, so it’s nice to go ahead and knock those suckers out on one operating table.  One of these procedures (presacral neurectomy) is actually the removal of the presacral nerve, as it originates from the base of the spine, splits, and wraps around the uterus.   This is admittedly the more invasive procedure.   My current OBGYN in Hattiesburg once told me that my body was actively having contractions, just like labor contractions, every week, dealing with and trying to process the abnormal growths of endometriosis.  He jokingly told me that labor would be a breeze for me, and then wisely moved out of arms reach, lest I go to swinging.  The removal of this nerve will eliminate the pain caused by these contractions.  In that same thought, a side effect is that I may not feel contractions (that actually bring about a baby) should I get pregnant.  As I sit here towards the end of a really hard and painful week dealing with endo,  I just can’t be mad about that.  Contractions for years, with no baby?  Pretty sure I’ve earned it.

April 4th, I will be running my last half marathon with rampant and unchecked endo.  I’ve run the distance before.  I’ve run this exact race before.  This race, however, will probably be an emotional one.   It will hurt, it won’t be pretty, and it sure won’t be fast.  It is the most ladylike way I can think of to give endometriosis the middle finger.  Will I be cured after this surgery?  No.  I will always live with, always fight this disease, until the day the Almighty calls me home.  There is no cure.  Yet.  The best I can hope for is remission, until the day they find a cure.  If I can run my halfs and finish my full marathon with is disease in full force, unchecked and running amuck in my body, I just might be able to fly in remission, sans pixie dust.


Another big date has been set, and an appointment has been made.  We have our initial appointment to start our first cycle of IVF on June 1st in Jackson.  My wonderful doctor moved clinics on me (just across town), and joined another FE.  With that move came a few new nurses and staff.  I was wary, because I’m very emotionally attached to my IUI nurses.  I don’t just ugly cry in front of anyone, and “concentrated lady feelings” come with a lot of ugly cry.  They reassured me they were still there, there’s just more of them.  Since he has joined up with another doctor, their pricing structure has changed and is actually more affordable than we were initially planning.  Medications will be ordered, our wine shelf will again become the “lady feelings and needles” shelf, more awesome band aids will be purchased, and the ovarian stimulation will begin on June 1st.

So far, these two things have been just a concept.  Now, they are hard dates.  I can count down to this, look forward to this.  I know that I could wake up on April 17th and be well on my way to remission.  By the end of April, there’s a good chance that I will be virtually pain free, with every organ system south of my rib cage functioning properly.  If my prognosis is as good as it’s expected to be, we could be parents to itty bitty blobs in Petri dishes by June.   I could ugly cry just thinking about it.

I have hurt for 15 years.  I’ve gone to school, gone to work, gone to church, gone running, and lived life with this for more than half my life. Not because I’m brave.  Not because I have a high pain tolerance (that’s something you develop out of necessity, in my opinion).  Not because I’m “handling this well.”  Because this has been my life, and it has to be handled.  I can’t ignore it.  I get up and deal with it, because that’s what I have to do.   This isn’t the way most little girls imagine how their family would come to be, but I am already seeing God be glorified in the process.

We do have some specific things we covet your prayers for:

  • Preparation for surgery:  Finacially, that we would use what God has blessed us with wisely; physically, that I can maintain a healthy weight up until surgery, as I will likely lose a good bit immediately afterwards, and that all surgery prep will go smoothly; emotionally, that my pre surgery anxiety will be replaced by His peace.
  • Procedurs will be uncomplicated, go as planned, and nothing extra be needed.
  • Healing will happen as planned, with no complications, and I will be able to return to work and life on schedule
  • REMISSION
  • Safe travels:  Mister and I, along with my parents and my sister, will be in Atlanta for 5 days.  It takes a village, and God gave us a good one.

We still have a long way to go, our journey is far from finished, but our God goes before us.  Sometimes he is a cloud, sometimes he is a pillar of fire, but His presence is always known.  We are His, and He knows our babies’ birthdays.

Case Review

It’s been two weeks since we started grieving our last negative test. Two weeks I have been “hormone free.” Emotionally, we are still healing. It took less than two weeks for my endometriosis to realize nothing is holding it back any more. It’s time for the moving on.

The last week has been difficult, physically. Daily cramping and strong consistent pain is back to the point that it’s occasionally difficult to eat and it’s often difficult to sleep. I am going to work, and that’s about it. I missed homecoming at Southern Miss, I’m not very social, and I stay still a lot. I carry a heating pad in my purse. If you don’t see me plugged in somewhere, I’ve probably got one of those stick-on disposable heating packs strapped on.

We have now taken the next step towards IVF. We are having our case reviewed by the Center for Endometriosis Care in Atlanta, GA. This includes nearly 40 pages of “Potential New Patient” forms (not even “actual” new patient forms, those come later??), a 2600 word “Personal Narrative” on my physical/emotional/psychological experience with endometriosis, a picture of me and the Mister, and 150+ pages of medical records that pertain to endometriosis. Basically a manuscript, everything but the kitchen sink and a DNA swab. I’m sure that will come later. Until then, 200ish pages are currently on their way to team at the CEC.

This wonderful facility is the leading research center on endometriosis and has the largest case study on the disease (5,000 patients followed over 20 years). If anyone knows this disease, it’s these guys. We are hoping for an aggressive conservative treatment option that focuses on removing the disease from all organs and tissues, while leaving the necessary organs in place and properly plumbed. We have the support of both our doctor in Hattiesburg and our doctor in Jackson. We are hoping that if our case gets accepted, we will be able to have surgery soon.

We came to the decision that if we were going to do IVF, we wanted to do it to the best of our ability. My insides between my belly button and my kneecaps “kind of look like a war zone.” That’s a direct quote from my radiology tech. Clearly, it’s not pretty. Things don’t hang out where they’re suppose to, they don’t function like they’re suppose to. It’s just a mess, really. With IVF, we will undoubtedly be creating life. Those little blobs of cells will be my children, whether or not we see them grow that far. From the beginning, we want to give them the best that we possibly can. Isn’t that what parents are programmed to do?
I don’t want to put my little embryos up in a sketchy “pay by the hour” motel. Right now, I’m afraid that’s my current condition. I at least want to be able to give them a Marriott or a Hilton. An extended stay suite, if you will. I have come to terms with the fact that God did not make me like a Four Seasons. I am not a Duggar. We feel like having this surgery and removing as much of the disease as we possibly can will not only significantly improve my quality of life, but give our children the best possible chance at healthy growth in-utero. It’s not a guarantee. Nothing is a guarantee. We do feel like it’s the best we can offer, and we do not want to go into IVF with less than our best.

Sometimes during weeks like this last one, it’s easy to get sucked into a sad-sop trap. I have been diagnosed with a disease for which there is no cure. No one even knows what exactly causes this disease. It’s easy to let myself get overwhelmed and exhausted with this constant battle for normalcy. My daddy would never claim to be a theologian, and most of the time our conversations are weird, bordering on inappropriate (burps are rated and those stupid Sonic commercials make us giggle every single time). However, when he slips into Serious Dad, his advice is normally on point.

Pray like everything depends on God, because it does. Act like everything expends on you, because it does.

I have based much of my personal theology around this simple (and paradoxical) idea that my father has repeated to me since I was a little girl. God has called us to walk in faith. We must actively do (the walk) and we must actively trust (the faith) that He is greater. We have not been given an easy walk, and He has not given us the option to “sit” in faith. We believe that, if our case and treatment plan are accepted, this is the final step that lies between us and IVF. It will be invasive. It will involve at least three different organ systems, possibly more. We will know by the end of the month if this surgery is in our immediate future. That is a little bit scary.

We are still grieving what wasn’t, but we are also ready to see what happens next. It’s a little frustrating that we can’t flip to the end of the book and make sure everything turns out ok (you know you did that to make sure Harry beat Voldermort…).

God has been good to us. He has provided for us and sustained us. We know He will continue this work in us until its completion.

And Harry doesn’t die.