Red Light

Apparently good blood results weren't all we needed for a green light. *sigh*

I went to see the Doc this morning and his first comment was, "So you decided to take a break?"  UM NO!   You told us we had to take a break until my blood results came back.  I still don't know where the miscommunication happened. 

He asked about my cycles during our "break" and he responded that they're too short.  Um they've been like this since I started seeing him.  (I have an Excel spreadsheet, duh!) So then we went into the room with the probe and he mumbled something about my endometrium reports from when I was 13 (um 19 years ago by the same doc who just accidentally didn't notice my UU while she was in there) and then BAM Oh you've got a big cyst on your left ovary.  Yes my good ovary.   (He proceeded to poke it a few times just for good measure.)

I finally got my clothes back and to the conference room we went.   More blood work, no treatments this month, more waiting.  

So I got poked twice.  Cried in the car.   Stopped for breakfast and cried over my chicken while my poor husband looked at me like he's afraid I'm going to totally melt down.   Poor guy. 

So now we wait for blood results from Boston.  Guess Santa isn't bringing us a baby for Christmas.  

This is what chicken therapy looks like lol

Just Give Me The Drill

There are supposed to be safe places in life.   Places you can go where the emotional/mental pain that's in your life can be forgotten for a while.  Places where my babyless existence isn't the predominant thought in my mind.

Target isn't safe.  Walmart is a battle ground.  Family reunions sheesh those are torture.  Facebook is Russian Roulette. 

But then there are the safe places - well they used to be safe.  Today, I flopped down in the dentist chair and the first words out of my hygienist's mouth were, "We'll I'm finally going to be a Grandma.  My daughter finally came through for me."  No numbing shot, no laughing gas, she just went straight for the kill.  Quite honestly, I'd rather have had the drill!

On a bright note, she didn't ask about my status (I saw her after our IUI and had to postpone xrays so she kinda knows we're trying).  And honestly, I'm happy for her and her daughter, but selfishly, I just wanted a calm tooth cleaning that didn't result in losing another safe place.  I expected chit chat on teeth, family and vacations, but instead I got baby showers, nursery colors and baby names.

Hey, at least I got a toothbrush, floss and toothpaste as a consolation prize... sigh.

Follow Up Appointment

I've lost track of the medical junk.   The physical gets overran by the emotional, but here's a brief synopsis.

August 19th: I was having severe stomach pains and pressure.   Calls, walk in clinics, etc. = no real answers.

August 20th:  Horrible appointment with Dr. Jerkface (he was hateful that day).  Given 2 antibiotics after bloodwork.   Told hormone levels were still too high.

August 26th: Follow up appointment.  Repeat bloodwork.  Pain is gone.

August 27th: Thyroid and Prolactin levels fine.

August 29th: Call to say Lupus Anticoagulant (LA) levels are elevated.  Baby aspirin each day for 12 weeks and then retest.

My hormone level is down to 81 and he's hopeful it will be to 0 soon.

If we move forward,  he will prescribe Progesterone suppositories (yippee) during pregnancy too.  

It's definitely heartbreaking to know my blood caused the miscarriage. On the positive side,  most women aren't tested for the LA until after multiple losses so I'm thankful he's proactive.  

Right now, we sit and wait for my period to start and see where the road takes us.  My body is thankful for the rest. 

Ouch

On Wednesday, we attended the funeral of a dear friend and amazing lady, Elodia.  I've blogged about her before (can't link things from this darn phone), but basically,  she's our best man's wife and the mother of 2.  The whole service was beautiful and heart wrenching and she'll be so missed.   My heart breaks for them.   We plan to love on them regularly and care for them like so many people did for us when we lost Mom. 

There's the background.  The services were over,  we were joining everyone at the church and then it happened.   An old football buddy from Keith's younger days so casually and innocently asked "Do you guys have kids?"  20 seconds after meeting the man,  and he shot me straight in the heart.   Keith turned around quickly with a deer in the headlights look and I quietly answered,  "Keith has a son.  I have a stepson.  His name is Perry."  The boys continued to talk about their lives.  I bit my lip and silently thanked God for sunglasses. 

Please don't think I'm making light of our friend dying and the heart ache of all who loved her.   I'm just simply coping with the loss of our friend and our baby.   The loss of a future of answering people happily, that "yes we have 2 children." 

More and more I question what innocent questions I've asked people over the years that have caused them pain (I'm sorry).  I definitely think more before I speak (and still say stupid things).  As I reminded our widower friend, people mean no harm with their words, but sheesh sometimes they just hurt!

Lefty

Well I typed this post once and hit discard instead of publish.  So here's the brief version.  Gggrrr

At our scan yesterday,  lefty woke up, but didn't produce 20+ measurements,  so no IUI,  but plenty of timed baby dance instead.  

I'm off of my AS drugs so I'm creeping around like a 90 year old lady.   I'm hoping the 2 weeks of pain is worth it! 

We're off to celebrate the 4th with family, food and pool time.  Oh and I chopped off all my hair.   It was hot and I needed a change :)

Crazy 8

Eight days of madness and I'm holding on tight!  Please keep in mind I'm on hormones through this all.....

Friday: Court date to resolve outstanding ex wife issues.  We won and I think our lawyer is worth every penny.  Hearing him tell Keith,  "Man,  did you trade up!  There's just no comparison" was good for my (shallow) ego.

Saturday: Yard work,  play date and errands.

Sunday: Laundry, pool time and ran Perry home.

Monday: Thumb therapy and Girl's night

Tuesday: Dermatology followup (clear!) and knee surgeon appointment (knee is shot but won't replace until I'm older.... fantastic)

Wednesday: Thumb therapy and got bad news about a friend battling colon cancer :(

Thursday: Ultrasound to see if lefty woke up.  And I'm taking a vacation day to spend time with my husband.

Friday: IUI and picnics

I can do this.....And the sweet surprise from hubby helped remind me of that!

And It's Back

WANTED: NEW SKELETON.

I'd prefer one that is 5'10, not knock kneed and small enough to where they'd be forced to do full body lipo to make it fit.

This round of complaining brought to you by the return of my thumb splint and occupational therapy appointments.  My thumb joint is mad again and they can't try injections (baby making precaution) so I'm back to square one.

Apparently you have to lose full use, experience numbness and tingling and have full time level 8+ pain for surgery.  Dropping to the floor in tears when it pops just isn't good enough.

And if I have to hear one more time how this normally happens to 60 year old women,  I'm going to dye my hair gray and start rocking the walker. Thank you yet again AS, your ability to kill my joints fascinates me.  

Screaming In A Pillow

Right now,  I need a good ole dramatic pillow screaming session.  I need to unleash the 101 emotions that are running wild.

In the last 36 hours:

-Had to have additional MRIs done.  Luckily I didn't have to have contrast again since the first time it infiltrated and I lost use of my right arm for a day. 

-Received our court documents and realized we'll be wasting 2 days of vacation for lawyer meetings and court since the hearing is 4 hours away.

-Got a severe infection in my finger (landscaping related injury) and have to be seen by the work doc later today.

-Called Dr T for my results and was informed they couldn't tell me anything over the phone (aka bad news), but they can't see me until Monday.  So now Perry's birthday party and our first anniversary are going to have a big ole dark cloud over them. 

-It's raining and raining and raining.

I'd like to go to bed now. 

Update: I'm now on high doses of antibiotics and had to get a tetanus shot.  Thankfully,  I did finally get to crawl in bed.  The game now is to fall asleep before my husband turns on his sleep apnea machine that he got 2 days ago. It sounds like an elephant on drugs every time he moves!

Unicorns Aren't So Magical

Today was my HSG.  I read way too many horror stories online so honestly I was scared to death.  I won't lie and say it was painless.  There were moments that took my breath away and made me yelp, but they were short lived.  Keith got to come back with me (and rock a polka dot lead vest).  I was surprised to see Dr. T there (he was nice today), it just never crossed my mind that he'd be doing the test himself.

The first attempt wasn't clear so I got a second shot of dye and then it was over.  In the end,  I've got a single horn UU (nicknamed Unicorn Uterus) and I've got a tube and kidney that are MIA on my right side.   The real kicker is my right ovary is my good egg producer.  So now, not only are we fighting a losing game to get pregnant,  but staying pregnant is going to be hard, partnered with complicated birth if we make it to that point.

Needless to say,  our IUI has been canceled.  I'm now scheduled for an MRI in two weeks so they can see more.  My hope is fading more each day.  I'm just feeling defeated and numb.  The sadness and defeat in Keith's eyes breaks my heart even more....He puts on a strong face for me, but his heart hurts too. 

I read a while back where someone else on a much much much harder journey struggled with knowing how to pray and I too find myself struggling.  Her answer was a simple, "Jesus, please" and trusting he knows the rest.  So tonight I'm simply praying the same...."Jesus,  please."

It's Mine to Save

Since last Tuesday, I’ve been doing a lot of research and thinking.  The more I learn and read about AS, the more concerned I get.  The idea of being crippled and unable to get relief from pain, is super frightening.  The thought of having to use my walker more than once or twice a year could almost bring me to tears.  I’ve had a few people say, “Oh that’s good that it is just arthritis,” and man do I wish that were true.  The arthritis that most people know, causes extreme aches and pains and creaks (and is surely miserable, not downplaying that), but this one makes joints lose functionality.  It creates surgeries and irreversible damage and causes the aches and pains.  Most arthritis kicks in late in life, I’m 31 and falling apart.  So far, my neck, back (SI joints), ribs, thumbs, shoulder, knees and feet are involved, that doesn’t leave many other body parts.

But this post isn’t meant to be a big ole whiner fest (surprise!), but instead me putting my plans in writing.  No one can fight for my health as well as I can, so here is my semi-public declaration of the lifestyle changes I am making.

1.      Eating healthier.  I am the queen of the yo-yo diet.  If the numbers on the scale don’t magically divide themselves in a matter of weeks, I am over it.  I go back to my old ways and gain 10 extra pounds.  Well, this is stopping.  I am going to eat healthier, unprocessed foods.  I asked my doctor about diet and she suggested the Mediterranean Diet or any diet that promotes unprocessed foods and Omega 3s.  She made it clear that my being overweight is not causing the breakdown like I originally feared, but she said that losing weight can only improve my health and help take strain off my joints. 

2.      Exercising.  AS causes severe fatigue and aching….not exactly ideal for exercise.  I refuse to blame my lack of exercise on this though, I’ve just been lazy.  Going forward, I will be moving more and getting off my butt.  I’m only allowed to swim right now, but soon enough, I can add elliptical, walking and biking back in.  I’m not allowed to pound my joints, so I’ll never be a runner, but I can move more, and make exercise a priority. 

3.      Drinking more water.  I am not a drinker….I can go the whole day without drinking.  I am on a mission to find a water bottle I love and make it my sidekick.  I’ve slipped into an old habit of grabbing a pop or sweet tea while on the road and that HAS to stop.  I refuse to give up my one coffee a day with flavored creamer, because let’s be honest, it is in the best interest of everyone around me, if I don’t give that up.

4.      Getting more sleep.  I am hoping the exercise and lack of random drinks throughout the day will help with this.  I also plan to put myself to bed earlier even if I just lay there and unwind.

5.      Taking my meds.  I hate maintenance drugs…..I quit taking them after a while (hence prenatal vitamins laying in my drawer.)  I will take my pills and faithfully listen to the doc.

So there it is, my plan to save my poor ole body from AS.  On a bright note, all of these things could also aid fertility (minus the RXs), but the bad news is, this diagnosis throws a wrench into having children. 

There are several factors to consider:

1.      It’s hereditary

2.      It affects my ability to receive an epidural

3.      Pregnancy can be 100 times more painful or it could give me relief….there is no norm to how AS patients respond

4.      I would have to quit taking all drugs during a pregnancy

5.      I’ve read miscarriages are more likely in AS patients (something to do with the inflammation, they think)

So yeah.  More to think about.  But for now, we aren’t pursuing fertility treatments, but we also aren’t preventing anything.  We’re letting things sink in and waiting for the results from my next rheumatologist appointment in May. 

Please feel free to pray for us….pray for my joints, pray for Keith’s sanity, pray for strength to stick to my plans, pray for our family.  I’m thankful for the answers God has helped me get, but we’re just starting on this road, and I’m scared of what the future holds. 

Dr. Personality MD

So the big day came and went for us to visit the Reproductive Medicine clinic.  I walked in scared to death (and sick), but luckily a friendly face greeted us.  The receptionist did our basic check-in and joked on whether I was still single (per my records) or if the man standing beside me happened to be my husband.  That helped calm me down.  Then our check-in nurse took us back and continued to be very fun and welcoming.  I started to think that things wouldn’t be so bad.

Next up was a round of 101 embarrassing questions by the PA, who was also pretty friendly.  My nerves had calmed down by this point.  Enter, Dr. Personality.  He barely grunted out names, avoided eye contact and immediately made me feel stupid.  “Why are you here, you haven’t been trying for a year.”  Well, I’m here because my doctor sent me and feels that I need to be here……HELLO, do you think this is where I want to be sitting?!?! 

So next, I’m dragged into a room with 3 people for the most uncomfortable ultrasound ever and again butted heads with him when I tried to tell him about my “special ovary” that wants to live in my ribcage.  He ignored and tortured me for a while longer before we finally tried things my way.  What do ya know….he found it instantly?  Jerk. 

So we make our way back to the room to discuss options.  Basically, he thinks we are jumping the gun.  I disagree.  I ask about the male analysis.  He says the urologist isn’t in the office……um, then why did I have to bring my husband and have him “prepared” for this test?!?!  So, he volunteers to do a half analysis himself (and states we'll be charged for it....um duh) and says he will call us later.

We leave, frustrated.  A few hours later, we receive a call.  We have a male factor diagnosis added on at this point.  Suddenly, Dr. Personality agrees that trying “naturally” for another 5 months doesn’t seem like the best idea.  So, we have another analysis next week and then we start talking washing/IUI/future plans.  I’m still annoyed that they don’t want to look at my tubes like my original (sweet) doctor recommended, but then again, at least they are doing something. 

So, that’s where we are right now…..frustrated but hopeful.  We're hoping at this point that two wrong reproductive systems make a right (i.e. baby). lol

Brain Dump

Life hasn’t exactly been exciting enough to write about lately….I consider this a good thing.  December usually stresses me out….like doctors have to write prescriptions, but this year I’m just not going to get all worked up. 

So instead I’ll write about all of the randomness that is swimming in my head.  Note: You may want medication before you try to follow all this rambling.

1. I am finally on a treatment plan to get my thumb approved for surgery.  I’m tired of trying to operate with a dud for a left hand, so I put on my big girl panties and am working on it.  A few weeks of OT, followed by some injections (they say they won’t help anything, but the insurance requires you to try) and then we can talk about fixing the darn thing.  I try not to think about them breaking bones, drilling holes and lacing it all back together with tendons…gag!!
   
2. We’ve been entertaining in our new kitchen!!!  So far we have hosted some of my people, some of Keith’s people, our old neighbor, Lindsay, friends Dave and Tonya, my MOH, April and her fiancé, my friend from VA,  Jenni, and some other friends, Chris, Jenna and Tayton. I love having the space to cook (or cheat and order take-out) and spend time with these people that we care about…. (PS...don't judge my punctuation, I suck at commas).
3. Keith’s mom has been having mild, mini strokes.  It is scary, but also a relief to finally know what is going on with her.  I struggle not to butt in and try to “fix” it, but I keeping reminding myself that it isn’t my place (trust me, I struggle).  It hurts me to see him worry about her, even though he tries to maintain his positive thoughts plan (which can drive me plain batty sometimes). 
4. We are meeting with a doctor at the Reproductive Medicine clinic next week.  I am excited, but super nervous.  Filling out the paperwork was exhausting, but we’re hopeful that we get some answers. 
5. I am really close to being finished with Christmas shopping.  Hoping by the end of the weekend to have everything bought and wrapped!!
6. We are participating in the Hoss Foundation Gift Program again this year.  We basically get to wrap gifts for those in need and help deliver them.  Last year, seeing the relief and appreciation in a single mother’s eyes and having her hug us, was by far the best part of Christmas.  I can’t wait to participate again this year. 
7. Our friends brought us a gorgeous Christmas arrangement last night…something about it reminded me of my Mom and it felt very comforting. 
   
   
   
8. Our builders are finally fixing stuff for us.  Perfect timing considering a rack on our master closet collapsed…gggrrrr.
   
   
   
9. We’re doing Secret Santa at work…..mine is kicking butt so far.  Pampering items and candy another day, doesn’t get much better. 
   
   
   
10. My cousin announced her pregnancy a few weeks ago and then after Thanksgiving announced her miscarriage.  My heart was completely broken for her….she buried her son who was almost 2 weeks old, then had a premature daughter who is perfect in every way now, and then this.  They are going to try again, and I pray this time that everything goes well for them.
11. I have recently discovered Pentatonix and pretty much think they are fabulous…I am loving their Christmas station on Pandora. 
12. We are going to Kohl’s and Muriales tonight….life is grand!!
13. I need to stop rambling so I can accomplish something else today.  However, I am using this rambling to distract myself because I REALLY want to order Pottery Barn personalized stockings for me, Keith and Perry….no Holly, NO!!!
    
    

    

    Wouldn't Holly, Perry and Keith look nice on those?!?!
    

    
    Happy Friday!!!!