Goodbye PMS, hello desperation

I didn’t have PMS this cycle!!  Praise God!!  DH thinks I’m a completely different person.  The naltrexone (32 mg/day) not only got rid of the ugly mood symptoms I used to have consistently post-peak (irritability, anger, depression, etc.) but it actually made my mood better than a normal non-PMS day.  It’s like a weight has been lifted, and I feel free to be happy.  I think I’m actually happier and more perky than usual.  This is the part that DH is still getting used to.  (He tends to be on the serious side.)  :) 

At least with PMS he knew exactly what to expect.  I would feel my mood turn sour and tell him I’m PMSing.  He would leave me alone.  Sometimes giving me extra compliments or hugs helped defuse my short fuse but often it was best if we just sat in different rooms.  (Sounds not so healthy for marriage, I know.)  But DH reassured me every month that he was not taking it personally, and he knew that he didn’t do anything wrong.  We learned very quickly that nothing important could be discussed on my PMS days, especially anything where we might disagree.  I was not capable of much rational thought those days; I was pretty much pure (negative) emotion.  But this cycle that was totally gone.  This is seriously amazing.

DH says this isn’t real; this is just polkadot on drugs.  Hahahahahaha  

It has me wondering though:  Is this my true normal (healthy) state that naltrexone has restored?   Were my endorphins so deficient before which caused the PMS and now they are back to normal levels?

It took me a while to get up to the 32 mg dose.  PPVI had me start at 4 mg/day, and every 10 days the dose doubled.  After I survived 10 days of 32 mg/day (divided up into four doses throughout the day), I could start taking the whole dose at night.  The final dose will now be 50 mg at night.

Since I “graduated” from 32 mg (compounded) to 50 mg, I can now get the prescription filled at a local, non-compounding pharmacy.  Apparently 50 mg is a typical dose for someone being treated for alcohol or opioid addictions, which is why normal pharmacies carry it.  (Did you know that’s what the rest of the world uses it for outside of NaPro?  I had to convince my doctor during my health scare in October that I did not have an addiction to drugs… haha)  The nurse from PPVI said I can either take 50 mg or 25 mg (by cutting the pill in half).  Since my mood has been too so good, I think I’ll try taking 25 mg daily to see if that’s enough to keep PMS at bay.  I don’t mind being extra smiley all the time, but DH is a little weary of it, so maybe 25 mg will be the perfect dose.

Months ago I had called around town to find a pharmacy that carries lactose-free naltrexone.  I found one pharmacy that had it.  When I called them on Friday afternoon to see if my new prescription was ready, they said they didn’t have any in stock and couldn’t order it until Monday.  Boo.  I'm not sure why they couldn't tell me that in one of the previous three times I called them last week...  :P

Unfortunately I ran out of naltrexone, and it was two days before my cycle ended…  Very poor timing.  I don’t know if it was naltrexone withdrawal or just normal plummeting hormone levels that come with a new cycle, but I cried uncontrollably on and off all day for two days—on both the day before CD1 and CD1.  It hasn’t been that bad in a long time.  When DH tried to comfort me, my tears soaked his shirt so much he had to change it.  :(  I knew CD1 was coming the day before it happened because my temperature dropped, so that was part of the reason for tears.  (I still have to monitor my temperature occasionally while on T3, and I know when my temperature drops, AF will arrive 24 hours later.  Long ago before I met DH I charted sympto-thermal for my own knowledge.)  I hope I’m more stable this cycle...

Because of the arrival of AF, Mass for Gaudete Sunday wasn’t the joyful occasion it’s supposed to be.  Do you know how many times words like “brokenhearted” or “sorrow(ful)” were mentioned during Mass?  At least six times at our parish.  I know because I cried after hearing each one because it reminded me of our IF.  With all the exhortations to rejoice, I tried but I told God I could not.  Instead I told Him this cross is crushing me.  Prayer Buddy, I offered it all up for you.

I don’t know whether to laugh or cry in admitting this.  DH and I went out Sunday afternoon to finish Christmas shopping.  I saw a woman holding a baby.  I had the urge to take the baby.  Bad, polkadot.  Bad idea.  I know I’m not the first IF girl with this thought.  Maybe the second, but definitely not the first!  It kind of shocked me to have that thought.  It happened again while we were out.  Twice in one day.  Yikes.  I promise I will never take anyone’s baby, but wow, did I feel desperate! 

I’m kind of feeling like Rachel in the Old Testament when she says, “Give me children or I shall die!”  (Genesis 30:1)   I understand the desperation.  I hate feeling this desperate, but it is what it is right now.

*sigh*  

God, will you send us a baby soon?  Please?  Thanks in advance.  :)

On grief

Today is our two-year anniversary of living with IF.  On 12/8/09, CD1 arrived marking the end of six failed TTC cycles (with fertility-focused intercourse).  I’m sure I was a sobbing mess at Mass for the Solemnity of the Immaculate Conception that night, especially during the reading from Luke about the Annunciation.  Not that Bible passages normally pour salt in a wound, but I think that night hearing about someone else (even the pure Virgin Mary…) conceiving a child (even the child Jesus…) would have been a painful reminder for me of our new undesired state.  The reading does contain the beautiful and comforting words “for nothing will be impossible for God” in reference to Elizabeth’s miraculous pregnancy, but I’m not sure that was much consolation for me that night.

It’s been a long, hard two years.  Really I should say two and half years that we've been TTC because the sorrow and pain didn’t just appear suddenly on 12/8/09.  Each of those cycles before we were labeled as IF added tears and heartache little by little so that by the time we fit the definition of IF, we were grieving.

Grief of this magnitude was new to me.  I had mourned the loss of beloved grandparents in the past, but the deep sorrow that followed their deaths didn’t last very long.  I had known both clients and friends who were struggling with IF, but I never imagined the depth of pain that they experienced until I experienced it firsthand.  If I had been a better FCP intern, I would have read one of the books they recommended on IF so I could sympathize with my IF clients better…but I didn’t.  With each new CD1 I mourned the loss of what could have been but never was and then tried to pick myself to try again in the new cycle.  Each new CD1 re-opened the emotional wound that had never completely healed in the previous month.  My dreams of having a large family (or even conceiving one child) died a little each month.

Without realizing it, I started going through the first 4 of the 5 stages of grief:

1.  Denial:  This isn't happening to me...  I can't be infertile...
2.  Anger:  This is so unfair!  Why does everyone else have no problems conceiving?!?  Grrr...
3.  Bargaining:  I would do anything to have a child.  Maybe if I promised to be more holy...
4.  Depression:  The sadness is overwhelming.  I feel so empty and alone.
5.  Acceptance:  It's going to be okay whether we have a child or not.  We can trust God.

I was stuck in denial for a long time.  It actually made me postpone starting NaPro for a little while because I was convinced we just needed to try another cycle or two.  Seeking help from NaPro meant that I was admitting we had a problem, which I did not want to do.  Once I started a new treatment (HCG was first), I refused to add another, thinking that all we needed was the current treatment.  I was in complete denial for months that I would ever need surgery.  No, not me.  I don’t need surgery.  (Looking back I laugh a little, but at the time I completely ignored all the stats I knew about rates of endo among IF women.)  I thought I would be different from all the IF clients I had sent to a NaPro surgeon.

Anger was more subtle because it seemed to be provoked by specific situations where (I assumed) any reasonable person would respond in the same way.  Usually it would rear its ugly head when someone announced a pregnancy.  I remember clearly the day when I learned of my now sister-in-law’s unexpected pregnancy.  The anger was intense, but I thought it was a natural response and didn’t connect it to grief.  (I think I was in denial about my anger!)

Once denial faded a little, bargaining took over.  All of a sudden I was ready to do almost anything to become pregnant.  Surgery?  Yes, please.  ASAP.  More supplements and prescriptions?  Bring ‘em on!  I think it filtered into my prayer life too as I found myself making deals with God.  God, if you bless us with a pregnancy, I will __________.

Depression was most obvious and consistent from CD1-CD3 of each new cycle.  But I would find myself slipping into it at completely random times during the cycle also.  Out of the blue, maybe at work, maybe while driving, I would be overcome with a wave of incredible sadness, the kind that feels like it will never end and is worse than anything I had ever felt before.  Even though the pain was profound, I knew God was close by my side—whether I could feel His presence or not (and some days I could not)—which brought me comfort.  On the days when trying to offer up the sorrow was too hard or it felt like it wasn’t helping, I would stare at a crucifix and think, “If such a great good can come from something so horrible as Jesus dying on the cross, surely there will be at least some good that will come from all this suffering.”  During the first year of IF, I thought I knew what depression was.  I probably did.  But in the cycles following my surgery (Feb. 2011), the depression I experienced was magnified.  It literally felt twice as painful, twice as deep as the depression episodes I had before surgery.  I had so hoped that surgery would be the final answer for fixing our IF.  I knew many people who conceived in the months shortly after their surgeries.  I thought that surely within six cycles, we would be pregnant.  We’re currently in the middle of the eighth cycle post-surgery.  It’s like we’re infertile all over again.

Acceptance has been slow in coming.  Sometimes it brings a great peace, but it doesn’t always last very long.  On one such day, I told DH confidently, “It’s okay if we can’t have kids.”  When I said it, I meant it 100%.  The next day DH asked me if I still felt the same, and I said maybe 50%.  This one is the hardest spiritual battle for me—trying to reconcile my desires for children with whatever God’s will is for us.  I want to get to the place where I can say, “Thy will be done,” and accept it if that doesn’t include children.  Sometimes a more honest prayer is:  “God, help me to want to want your will to be done.”

From the little I’ve read on the subject of grief, people tend to progress through the five stages linearly or circularly (see my lovely illustrations here).

Sometimes you can revert back to a prior stage you thought you moved past.  Even though I’ve pretty much described a linear progression in my experience here, it’s mostly a broad overview from memory.  In reality, I think a more accurate diagram of the five stages would be this:

Notice all the bouncing around among the stages...  This picture might represent the span of one cycle, or on my more crazy days, it could all happen in a single 24-hour period. ;) 

All I have to say is thank God for a wonderful, supportive DH who puts up with me on my emotional roller coaster!  And thank God for all of you and your prayers.  Knowing that I'm not the only one going through this is a huge blessing!  Your encouragement and empathy means the world to me. :)

PPVI news: plans for expansion

I know this is a little late, but I wanted to share this news just in case you hadn't heard about it...

The PPVI Institute announced that it is planning to expand their facility.  Exciting, right!?!  The property next door to the current PPVI building is up for sale, and PPVI is trying to purchase it.  You can read the proposal in this pdf.  They want to build an addition onto the Institute, which will enable them to have 10 physicians.  Ten NaPro physicians!!!  Can you imagine that???  Think about what that would do to the waiting times that patients currently have to endure to see one of their surgeons!  Right now they have three physicians on staff.  From the pictures, it looks like they're going to double the size of the building.

So now they're trying to raise money for the loan to buy the adjacent land which apparently is very time-sensitive.  They put out an urgent request recently with the (now past) deadline of November 21st.  I couldn't find on their website or Facebook page if they raised enough money for the land loan already.  We're on the Institute's mailing list, and we didn't receive a (paper) letter about this request until after the deadline, so maybe the deadline was more of a suggestion to show how urgent this is?  You can read the letter from Dr. Hilgers here.  If you have the means, you can donate online at the PPVI website and specify that your donation is for the capital campaign.  The letter we received asked for a donation of $750 to purchase "one unit" of the new building.

If you can't support the Institute financially, please keep them and this effort in your prayers.  I would love to see these plans become a reality.  Think of all the couples that could be helped by this expansion!  Let me say it again:  ten NaPro physicians!  How amazing would that be!

Here's a 13-minute video that details the background of NaPro and the Institute.  There are some great pictures of Dr. Hilgers from the 70s or 80s in the first 3.5 minutes.  :)

Dreams, meds, and Murphy's Law

This post is rather random.  You've been warned.  :)

1.  The only typical side effect with naltrexone, according to a PPVI nurse, is vivid dreams.  I experienced that a couple times when I first started LDN, but haven't noticed it since then even though my dose is much higher.  But this week, I had two very vivid dreams related to IF back to back.  In the first, DH and I adopted a baby girl.  We picked her up from an airport parking lot at night.  It was a very strange scenario, but I woke up and thought it was true for a moment.  It felt very real.  In the second, I was having an ultrasound during my post-peak phase and learned I was pregnant.  I was so excited by the news.  When I woke up, it felt as if I had truly had the ultrasound the day before.  Granted I was groggy from sleep, but it took a lot of mental effort to figure out (convince myself?) that I did not have an ultrasound and was not pregnant.  In the dream I was several days further along in my cycle than I am in real life so it really was not possible.  IF must be really getting to me if the new theme for my dreams is babies.

2.  DH and I started a second round of antibiotics—Zithromax.  It's in the same family of antibiotics as Biaxin, so I am optimistic that it might help.  Given the side effects I had from the last round of antibiotics, I was a little nervous about this one.  The package insert was comforting: “This drug is usually well tolerated.  Less than 1% of patients discontinued therapy due to side effects.  The most common side effects are diarrhea (5%), nausea (3%), and abdominal pain (3%).”  I was not happy to see that nausea was on the list though.  I told DH I'd take diarrhea over nausea.  He looked at me like I was crazy.  Since he couldn't remember the last time he was nauseous, I told him he must have forgotten how it felt because surely no one would pick nausea over diarrhea. ;)

At dinnertime on day 2 of the Zithromax, I started feeling mildly nauseous—just like how it started with the Flagyl on day 2.  I had flashbacks to last month.  I didn't think I could take three weeks of it again.  It's one thing to endure nausea and vomiting during pregnancy knowing that there will be a baby at the end of it, but to have to endure in order that you might possibly get pregnant (no guarantees, of course) is really tough.  I figured I would wait and see what happened the next day.  Fortunately, there has been no nausea since that night.  Thank you, God!

3.  I am a little extra hopeful this cycle.  I have no reason to think the Biaxin did any good because my TEBB lasted as long as usual (5 days).  But—perhaps irrationally—I am secretly hoping that maybe the drug did reduce inflammation enough in my uterus to allow implantation.  And I've been at my current dose of T3 for almost a month, so this is the first full cycle where it might have an effect...  I can make up scenarios all day long hoping this month will be the month, but that doesn't change reality.  I know that.  Please don't lock me up for insanity just yet.  :)  Plus it's Prayer Buddy time, and we all know how pregnancy rates among IFers increase dramatically during this time...  To me, new treatment + extra prayers = more hope. :)  (No pressure, Prayer Buddy.  haha)

The other reason for more hope this cycle is that I noticed breast tenderness for the first time in a long time, and it hasn't gone away yet. So my hope isn't completely irrational. ;)

4.  After ordering meds from Kubat's regularly for a while now, I've decided there is some version of Murphy's Law that applies.  It would go something like this:

If you need your refill in W days (e.g., W = 4 days), it will be delivered in X days, where X>W (e.g., X = 6 days).

If you don't need your refill for Y days (where 7 < Y < 14), it will be delivered in Z days, where Z << Y. (Z = 3 days to be exact)

Note: << means "much less than" here.

In other words, if you plan ahead, you'll get your refill quickly, and when you don't call until 4 days before you run out, you won't get the meds in time, even though 95% of the time you receive your meds in 3 days.

5.  I will be glad to be able to get my naltrexone locally instead of from Kubat's as soon as I'm up to 50 mg, which hopefully happens tomorrow when the nurse returns my call.  The PPVI protocol for increasing naltrexone has had me calling PPVI when I have 4-5 days of pills remaining to report how I'm feeling.  It takes a day for the nurse to return my call, meaning Kubat's gets the order for the increased dose when I have 3-4 days of pills left.  (I asked a nurse if I could call earlier than 5 days, and she said, "No, we have to follow the protocol."  I said in my experience, Kubat's sometimes needs more than 4 days...  She said 4 days is plenty.  Isn't it ironic that my meds didn't arrive in 4 days after that conversation?)  This stresses me out a little, so I just wanted to give you a heads up in case this would ever apply to you.  If you have the choice, give Kubat's a week to be on the safe side. :)

6.  DH and I are trying to focus on Advent even though everywhere we go is Christmas, Christmas, Christmas.  The only decorations we have up are the stockings and the Advent wreath.  We won't be putting anything else up including the tree until December 17th, the start of the O Antiphons and the "final" countdown to Christmas.  A dear priest friend of ours suggested this idea to us before we were married.  He reminded us that Catholics celebrate on a feast day and afterwards, not before.  I need that reminder to help prepare for Christmas.  It's been really nice to do our evening prayers with the Advent wreath lit.

7.  Tomorrow is St. Nick's Day.  I hung our stockings, and DH set out his shoes.  (He grew up with the shoe tradition, and I grew up with stockings, so we're trying to merge them.)  He asked me if I minded if he opened his presents in the morning while I was still sleeping.  He gets up much earlier than me and didn't want to wait until he gets home in the evening, even though this is how we've done it every year.  I said I wanted to open them together, so if he can get me out of bed at the crack of dawn, we can open them together.  Getting me out of bed might be a challenge.  I think he might resort to carrying me to the living room if I'm uncooperative.  He is really excited about the presents.  It's sweet. ;)