Thursday, October 30, 2014

Worst Blogger Ever

Ok, maybe not the worst in all of blogger history, but I've been majorly slacking off! I have been SO BUSY running around, trying to get everything in order for our (fingers crossed) hopeful cycle... Dr. KK has been keeping me BUSY. I can't keep count of all the blood draws I have had over the past four and a half weeks... it's been insane. Here are my updates... quickly! Because I don't have much time:

Rheumatologist: Dr. KK recommended that I see a rheumy to have a full evaluation after my positive ANA. Dr. B, my rheumy, ran a lot of blood work (nine vials) and diagnosed me with Sjogren's Syndrome. She also mentioned something about my Rheumatoid Arthritis test coming back high, but said that she doesn't think that I have RA. Then something about inactive lupus in my system.... oh god! I had a classroom full of students, and I couldn't really process the information fast enough on our phone call. I will be sitting down with her next Tuesday to do a formal follow-up. I will have a lot of questions.

RE: I've been working with my RE to get a plan in place so we are ready to cycle the SECOND that we get the OK from Dr. KK (the Dr. KK OK, LOL!). I've been doing all of the cycle prep and am PRAYING that we can get this thing going in November. I'll be seeing Dr. J on Wednesday next week to check in on the status of my ute.

KK: Sooooo much blood work!!! And pills!! And injections too. Today's cocktail includes Synthroid, Prednisone, Metformin, Supplements Galore, Baby Aspirin, Lupron, and Delestrogen. Next Friday is the big day. I'll be starting Lovenox over the weekend, and we'll be checking to see how well that is working with another doppler ultrasound. Then I'll be sitting down to talk to Dr. KK and get all the results from our endless blood work over the past month. And finally, if all the stars align, I will have my first IVIg infusion. There are a lot of stars that need to get in order for that to happen... including the appeal to my insurance for coverage. Ugh. So much stress. I don't even want to get into it!!!

Saturday, October 18, 2014

***Warning: Depressing Topic***

Don't ask me how, but I got to thinking about our traumatizing experience with IVF #2 today. I have been keeping a private journal, and writing as I glide in my fancy reading room chair. Time has passed since that day in December, but the pain is still there tugging at my heart, swelling up my throat, and tearing up my eyes.

I can't fully explain how deeply that cycle hurt me - hurt us - and every time I think of 8:20am December 9, 2013... I go right back to that awful moment when I saw the doctor's name show up on my caller ID. Devastated. We were devastated.

past tense: devastated; past participle: devastated
  1. destroy or ruin (something).
    "the city was devastated by a huge earthquake"
    synonyms:destroyruinwreck, lay waste, ravagedemolish, raze (to the ground),levelflatten;

I am not exaggerating when I say that was the worst day of my life. ::deep breath, heavy sigh::

A revelation I just had concerning the information we learned that day: we have been dreaming of having a baby for three years now, and in that time how many times have we had conception? Fertilization? A blastocyst? Implantation? A positive pregnancy test?
...conception? Probably 80% of the time... Fertilization? I think 70% of the time... A blastocyst? I suspect 5% of the time... Implantation? Maybe (if I'm being generous) 0.5% of the time... A positive pregnancy test? 0% of the time.
That's depressing.

How does that make me feel moving forward? Scared as hell. I am completely traumatized by our experience with IVF. To the point where I don't know if I could actually do it ever again. Sure, Dr. KK is working with us now, and hopefully she will make a world of difference for us. But that doesn't change how completely anxious I feel at the prospect of enduring another week of ER to ET... and the aftermath if history repeats itself. Quite frankly, the thought makes me sick. So I will stop thinking about it.

Sunday, October 12, 2014

9+1 Status: COMPLETE!!!

Over the past five and a half months, I have been working on a goal that is very near and dear to me as an avid marathon runner: earning entry into the 2015 NYC Marathon.

Most races, you can just pay the registration fee, and you're good to go as long as it doesn't sell out first. Well, it's not so simple with NYC. There's such a high demand for spots, that the race organizers had to develop a system to keep it fair. In order to run in the NYC Marathon, you have to qualify. Here's how you can qualify:

  1. Time Qualification - run another marathon really fast... not going to happen for me!! I'd have to run a marathon under 3:10, or a half under 1:30... my current PRs in those races are 3:42 and 1:45 respectively.
  2. Charity - join a charity team, fundraise their required minimum, run the race! The only catch is that $3,000 is the average minimum!!
  3. Lottery - pay $11 to enter the lottery and hope you get lucky. My problem? I've applied six times and have never won a spot!
  4. 9+1 - run 9 NYRR marathon qualifying races (distances vary from 1-26.2 mile races) and volunteer at 1 race. All races must be completed in one calendar year, and you must be a member.
***Possible Tissue Warning***
I started my 9+1 with a 4 mile race on April 27th... just five days after saying goodbye to Ninja. I wore my Team FUIF jersey on my back, and my Ninja on my mind and heart for each and every step along the way. Today, October 12th, I completed my 9th and final race. I have officially earned a spot to the 2015 NYC Marathon!

9+1 Status
for guaranteed entry to2015 TCS New York City Marathon
Giving up my spot to the 2013 NYC Marathon was heartbreaking... in my eyes, that loss went hand in hand with the BFN of IVF #1. The plan was to defer the spot if I got pregnant from that cycle and run the race this year... and if I didn't get pregnant, I planned to give the spot to a friend. I am so happy that Amanda got to run the race, but it was very hard to hand over my bib. Along with the bib and the medal I should've kept for myself, I was giving up our hopes for a baby in 2014. </3

So you can probably imagine how important it is to me to get back to NYC and run the marathon. And I will. I dedicate these past 5-1/2 months of work to Ninja... I did it all for you, dear, and when I cross the finish line of the marathon, that will be for you too.
***End Tissue Warning***

Today's race was also bittersweet for another reason: it was my last race until we resolve our journey with infertility. One of the restrictions that Dr. KK has made for me includes no marathon running. She originally said no running at all until I advocated for myself. Now, I am allowed to run up until we cycle again, but under significant restrictions. You can bet your bottom dollar that I enjoyed every second of the race today. Even the parts when it was uncomfortable... with running, I take the good with the bad (and sometimes ugly), and today was mostly good though I did have some issues with my stomach. Maybe the meds contributed, or maybe it's the nutrition adjustment that I still can't figure out (after all these years!!!). Either way, I am overjoyed and so proud! Here's a collage I made of two jumps for joy after crossing the finish line:

Thanks for stopping by!

Monday, October 6, 2014

It's All Coming Back

Being on the bench for the past five months, I have completely repressed just how stressful infertility is. And it is stressful in every single way imaginable: physically, emotionally, socially...

I have been off the bench for a few days, and I'm already feeling completely overwhelmed by it all. There was even a moment over the weekend when I wished I was back on the bench! That's how I can tell that it's bad. I've wanted nothing more than to get moving for the past five months.

At this particular moment, it's the physical stress that is bothering me most. I woke up with a headache, and feeling nauseous and hungry. I blame the meds and low-carb diet. My body has to get with the program, and hopefully it'll figure it out quickly.

Emotionally, I am hoping that I can keep my stress level down to a minimum. We'll see. Infertility is stressful, and so is work, and life in general.

I'm going to push on. I'm thinking about all the plans I have for the day, and at first they make me groan, "How will I do it all when I feel like shit?" But maybe if I just get started, I'll get distracted from the discomfort I am feeling now.

Saturday, October 4, 2014

Dr. KK Follow-up

We had our follow-up with Dr. KK on Monday, and all I can say is WOW. It was a lot of information to take in, and it seems like we have a lot to work on. I am still processing everything, and I wonder if my head will ever stop spinning! I will say that after being mostly unexplained for so long, I am happy to have something concrete to focus on. Hopefully it'll make the difference we've been looking for. 

In a nutshell, I'm going on quite a few additional supplements and medications before we get going with our next cycle. We are hoping to do a mid-November ER/ET and will freeze-all if my uterus doesn't get sorted out by then.

The details if anyone is interested 
  • High IgG
  • Moderately high NK cells = IVIg
  • Vitamin D deficiency = supplement
  • Protein S deficiency = Lovenox
  • High PAI-1 = Metformin, low-carb diet, regular exercise (though marathon training does not qualify)
  • Autoimmune Thyroiditis = Synthroid
  • Low-normal DHEA = supplement
  • POF 
  • Positive ANA = see a rheumatologist, treat with Prednisone & IVIg
  • Restricted blood flow to the uterus 
  • Recommended Supplements: CoQ10 (600mg), Vit D (4000iu), Vit E (400iu), Fish Oil (2000mg), DHEA (25mg)
  • Recommended Medications: IVIg, Prednisone (10mg), Lovenox (40iu daily), LD Baby Aspirin (81mg), Metformin (500mg), Synthroid (25mcg)
  • Recommended Lifestyle Changes: low-carb diet, regular exercise, maintain current BMI, no marathons
This past week was a bit chaotic (ok, it was REALLY chaotic) as I scrambled to get supplements, prescriptions, and attempt a low-carb diet. Let me tell you, I suck at the low-carb thing and I hate it. I made an appointment with a nutritionist for Tuesday. Hopefully he can help me make sense of all this (especially since I need to maintain my BMI). 

I also made an appointment with a rheumatologist for October 14th. Dr. KK recommended that I get a full evaluation because my ANA panel was a strong positive (with a speckled pattern, which is suggestive of Sjogren's Syndrome). Hopefully all is well in that department, and I get away with a clean bill of health...

Coordinating the demands of three doctors, two nurses, and a nutritionist is already stressing me out big time. I am praying that I don't lose my mind through all of this. 

And finally, yes, the no running thing... Sigh. What can I say? Of course I am disappointed. When Dr. KK said that I should get regular exercise, I had a little glimmer of hope that the marathon training would be ok. Nope! She is concerned that running to that extent could cause an autoimmune inflammatory response that would be detrimental to our cycle. We have invested a lot of time, energy, and money into this cycle already. I do not want to jeopardize it for a race, so I am ok with letting go (though it was a bummer to have to turn down a last minute spot in this year's NYC Marathon). I asked Dr. KK how soon I should stop marathon training, and she said immediately. .......... :'( I was able to advocate for myself, and told her my concerns about triggering another depression. She agreed that I could continue running up until the start of my cycle (no more than 10 miles on the weekends and 3-4 runs under 60 minutes during the week). Once my cycle starts, then no running.

Thanks for stopping by to read my update :) Have a wonderful weekend!