I Am My Own Worst Enemy-Part 4

I took a little trip to my therapist before my RE appt. yesterday. I was quite overdue. It felt great to catch up & vent to an outside source for a bit. As I left, I told her, “thank you, I needed this today!”

The last thing Dr. G knew was that we were doing our FET this month. She probably figured I was anxiety driven about the transfer or an early pregnancy when I asked to come see her.  Instead, she got an earful on a totally different scenario! She described it as going from a green light to a BIG red.  Yes, yes, indeed, Doc!

She asked me how I was feeling about the red light on the FET, the Adenomyoma being back, the gestational carrier talk.  I told her that I surpisingly think I am doing OK. I told her I hadnt even cried much, compared to how I was crying months ago. I explained to her how I seem to be smiling more, focusing on things unrelated to pregnancy, talking about things unrelated to pregnancy, doing things unrelated to it, etc.  I told her maybe I am just numb now.

Thats when she jumped in. She told me she wanted to create 2 frames.  After she described each, we could discuss which one I think I am in. 

Frame 1-A Negative Frame on Numbness

I am numb to the pain, meaning I no longer feel it or care much about it.  I am no longer sad, or hurt, worried or angry about any of the news received. Basically, no more feelings. I am numb to what has happened and is happening in regards to RPL and IF.  It doesnt affect or bother me. 

Frame 2-A Positive Frame on Numbness

I am actively coping by showing resilience and strength. This should not be mistaken for not hurting. I am still hurting badly, but I make a choice everyday to live while I am suffering. I can choose to cry all day, stay in bed, and cut myself off from the world, or I can choose to be happy, help others, and stay active. Its not easy by any means but I am making my negative as positive as I can. 

I chose frame 2! Thats when I realized I am proud of myself. Dr. G agreed, and said I am definetly learning how to be an active coper and she sees what progress I have made/am making.  Now, this does not mean I am not allowed to have bad days, or moments, sort of like a relapse.  I am going to and its OK.

From now on, she encouraged me to look at what I initially called “numbness” in a more positive light, “coping.” She also pointed out how powerful it is to share this with others who are also struggling in their lives. You can choose to be OK, no matter what the circumstance!

I went on to discuss my fears about if the mass doesnt go away, if we transfer again and it doesnt work, if i miscarry, if we use a carrier and it doesnt work, etc. I feel like I am in a good place and dont want to go back to crying all day and barely being able to get out of bed.  She asked me if it is necessary to ask all of those questions at once. Its not, but that is so me.  Dr.G confirmed by asking me if I like to watch the previews of movies, or read the inside cover and back covers of books, or if I like to be surprised more.  I ALWAYS watch the previews (my husband hates it) and I honestly have a hard time not opening up to the last page and reading the last page of a book…awful I know! Working on it. Since I always want to know how things end, Dr. G encouraged me to write the last page of my story. I LOVE this idea!

Next, we touched on self-care. Dr.G was curious if my body is being used more for science than for my own enjoyment. I had never really thought of it, but when she brought it up, I gave it some thought and I think its possible it is more scientific than not. She suggested for every poke and/or prod, I could go to the gym, take a yoga class, ride my bike, enjoy an activity outside with our dogs, pretty much be physically active.  I was doing much better with this in the summer than since I have been back to work.  However, since I am now aware of the science v. pleasure battle currently taking place with my body, I am going to try and make some more effort here.  

There were other things we touched on, but overall I am pleased with the summary I have given. Thanks for reading! 

I am My Own Worst Enemy-Part 3

Today, I left session 3 of therapy with a lot to think about.  If you have been following along with my sessions, you may recall that I said I wanted to keep track of what I “took” from each one.  Let’s break this reflection up into 2 pieces–the “us” and the “me.”

The “Us”

Some questions Dr. G asked us to think about and share at my next visit:

• Why do I want to be a mother? 
• Why does my husband want to be a father? 
• Are our reasons the same or different?

• If I cannot carry our child to term, are there any other routes we are okay with taking to get to parenthood or to not get to parenthood for that matter? For example, a child-free life (talked a lot about this one), adoption, gestational surrogacy, sperm donor, etc.
• Are our (acceptable) paths to parenthood the same? If not, is there a compromise we can come to? How? 

I quickly asked Dr. G if she thinks there is a right or wrong answer to these questions.  She reassured me that any answer is totally acceptable (which I was glad to hear), and that the purpose of the questions is to know where we are going with all of this.  Knowing what extremes we are both willing to or not willing to go through in our quest to parenthood will provide a sense of security and comfort as we move forward.  I completely agreed when she explained this to me, and as I type this, it makes even more sense to me now, and I couldn’t agree more.

In the past, when I was miscarrying, I never knew what we were going to do after it was over.  Of course, I was grieving the babies I lost, but looking back, I was also grieving our future and the uncertainty of it.  I can still remember the exact spots I sat and cried in as I wondered what we would do next.  

While I know that infertility and recurrent pregnancy loss take away a lot of control and planning, trust me I do, I also know that our future path to parenthood is something we can control.  You heard me right…we can control it!

We can choose to be child free now, after another loss, and/or after our embryos are gone.

We can choose to use a gestational surrogate now so I am not subjected to the possible physical and mental anguish of another loss, or when/if another miscarriage occurs. 

We can purse adoption if we both feel it would satisfy our desires of parenthood.

Like Dr. G reinforced, when it boils down to it, we have not really drawn our lines in the sand.  Revisiting why want to be parents, and how we can we satisfy this desire if the current path we are on does not work is important.  And sooner rather than later.  Dr. G pleaded with me not to wait until something traumatic happens for us to make those tough decisions.  Her reasoning was simple-during a crisis we will not be in the frame of mind we are now.  Again, I agree with this.  Pretty basic thing, but hearing from an outsider can put it into perspective.

The “Me” 

Dr. G started off the session with me telling her how my week went.  I told her it was pretty uneventful, with the exception of Saturday of course.  Saturday was the day I went to the lab and had my blood drawn and dropped off my urine sample. At the lab, I encountered the very pregnant woman, a newborn and 2 sets of grandparents that I blogged about.  What I didn’t blog about was what came later on that day.  We went to 2 birthday parties, one for a 3 year old and one for a 12 year old. At both parties, there were pregnant women and newborns, forget all the kids running a muck.  At one point, my husband and I were trapped in a room listening to a pregnant couple discuss their nursery theme.  Talk about a day from HELL!

Aside from that bizarre day, I told Dr. G I haven’t really been my usual IF self the past week.  What I mean by this is, I haven’t been as consumed by it all.  I haven’t been thinking or talking about it as much.  To be honest, I haven’t even felt like blogging about it all as much, which is really strange.  She told me that I *may* be learning to compartmentalize through our sessions together.  Dr. G said some patients do this, and some don’t, and that “compartmentalizing” looks very different for each person. I might be starting to put some things aside that I normally wouldn’t have, because I know I will be able to discuss them with her during our hour session each week. Sounds like it could very well be the case, at least I’d like to think so anyways!

In addition to how my week went, we discussed the memorial “box” that we had talked about a week ago. At the end of our last session, she asked me to consider a few things about the box, such as why I felt the urge to hurry up and finish it once I started it, and what it would be like if I didn’t.  I did think this over and I came to the conclusion of what not finishing the box could mean to me.  It could represent that my babies are still here with me, and I can visit the box and work on it whenever I have the desire to spend time with them. 

As you can see, lots to ponder.  As always, thanks for the support, friends!

I am My Own Worst Enemy-Part 2

Session 2 of counseling went well.  We started off with a reflection of how I felt about session 1, with a summary of how my week went to follow.  I informed her of the dream I had, and the appointment with my family Dr.  She listened and reinforced a few things:

1. In my dream, my friend acknowledged my babies, which I may have needed in order to have acceptance of her pregnancy.  Even though she had acknowledged it prior, I may not have been ready to accept it.  The dream also indicates my desire to be closer with her again.
2. The new sense of support I feel, having a team of Dr.’s working together on my behalf now.

Next, we talked about the difference between losing a pregnancy, and losing a person who has physically lived here on Earth.  I focused on losing my maternal grandparents, their funerals, burials, and celebrations of their life afterwards.  I explained how I felt a sense of closure after these events, how I can look back and smile about things we shared during their life even though I still miss them and mourn their deaths.  With my miscarriages, it is different; I do not feel closure. I cannot look back at all the wonderful memories I shared with my unborn children.  I do not know why they passed away. There was no funeral or celebration of their lives. Points gathered here:

1. When you lose a person who was physically here, you are left with tangible memories of your time together.  For example, the trips you took with them, the sports you played with them, the hugs, the kisses, etc.  With a miscarriage, you do not have tangible events to remember, you just have what your hopes and dreams were for your future with them.  What were my hopes and dreams for them and our family?
2. Society has created “socially acceptable” norms to mourn the loss of people who have walked the Earth, but unfortunately not for those who were only in their mother’s belly.
3. Since there are no official steps in place for grieving the loss of an unborn child, it is important we create what we feel to be right in our own eyes.

That being said, Dr. G asked me some questions on what I have done so far to memorialize my lost children.  I showed her my tattoo and my bracelet with their birthstones.  I explained to her that I also purchased a wooden box, paint, and some trinkets awhile back that I hoped to use in a ceremony for them, but haven’t yet.  She questioned why I haven’t yet, and I explained that perhaps I am afraid to do it, because once it is complete, what do I have left? My response sparked some conversation.  She asked me why I feel as though I have to “finish” it? I really did not know what to say to that, not finishing it wasn’t something I even considered until then. My personality has always been to start a project, then finish it. She encouraged me to ponder starting it, but not finishing it right away, and what that would look like in terms of healing. We will go more in-depth with this in our next session. 

We touched on my anxiety, and setting up a positive plan of action for a future FET.  She had me describe what a typical treatment cycle has been like.  I told her about my peeing on a stick addiction, the serial betas, ultrasounds, etc.  All of which she knows well since infertility is her specialty.  She inquired as to why I feel the need to test at home so much, and I could easily respond with the answer, “for control.”  Dr. G asked some really good questions at this point:

1. Control of what?
2. Did I end up having control of what happened with each pregnancy anyways?
3. How much do I really need to know during a cycle? For instance, are the betas really necessary for me to know? Did it matter if the lines were getting darker on the tests or not? Will knowing any of this change the outcome of what eventually happens?
4. Are these actions (testing at home, serial betas, serial ultrasounds) causing me more anxiety?
5. Is there anything we can do moving forward instead of these actions?

Lastly, we discussed how my loss is my loss, and should not be compared to any one else’s loss.  This was brought up due to some recent comments made to me such as, “well, at least you weren’t further along, or at least it was in the first trimester.”  She stood firm that psychologically speaking, a loss at 6 weeks can be as debilitating as a loss at 16 weeks.  We cannot say how devastated a person feels because of how far along in their pregnancy they were.  The grief that comes with a miscarriage depends solely on the hopes and dreams of what the person envisioned for their child, not how far along they were in the pregnancy.  She asked me what if all my losses had been at 6 weeks? Would I not feel as bad as I do now? Of course, I would have felt just as horrible, regardless of whether or not I saw the heartbeat many times and made it to 10 weeks or not.  This is not a competition.  My hopes and dreams for my earlier losses were just as real as the ones for my pregnancy that was further along.

There was even more, but I feel this was what I soaked up the most of during our session. Really looking forward to session 3!

I’m My Own Worst Enemy-Part 1

I haven’t been to a psychologist since February of this year, which probably isn’t the best thing considering we have lost 5 babies and our dog since 2014.

I have been to a few psychologists in my lifetime though.  When I was younger, I went after my parents divorced.  I also went during my rebellious teenage years.  I usually didn’t have a say in the matter; in other words, my parents thought it was the best thing for me and so I had to go.  I don’t think I really got too much out of it then.  When I reached the age of independence, around 21 or so, I decided to go back to counseling on my own accord.  I did find this time round of treatment helpful.  Perhaps it’s because I actually desired to go.  The same goes for the brief sessions I attended earlier this year.

Since I am off work and have quite a bit of free time now, I decided it was time for me to get back into counseling.  I found a new psychologist who specializes in Women’s Health, specifically infertility, pregnancy loss, etc.  This might not seem like a big deal, but trust me, it is.  And finding someone who specializes in this area is not easy at all, so when I was referred to her I was rather pleased (even though my insurance will not cover it).

Yesterday was my first session with Dr. G.  When I arrived at my appointment in the ritzier part of town, I entered the waiting room and filled out some paperwork. Some of the questions went like this:

• Any children?
• Any pregnancies?
• Ever had counseling before?
• Why are you here?
• What do you hope to gain from therapy?
• Anything else you think I should know about you?

The session began as one usually would-reviewing history, listening to me ramble as I try to explain my life, taking notes, asking general questions, etc.  I have found that since the majority of counseling sessions are only 1 hr it is difficult to get a lot accomplished in that 1st visit.  It’s more like a getting to know one another time, and deciding if you want to return for a second visit or not.  I did decide that I will return for a second visit with Dr. G.  Here’s why.

In the short time I was with her, she informed me of some very important things and I could tell she knew her stuff.  Here are some main points covered:

1. Studies have shown that those diagnosed with infertility face similar levels of stress as those diagnosed with cancer.  Both are chronic illnesses with unknown outcomes (of course one is deadly and one is not). 
2. Many people think if they had the money they would continue infertility treatments.  Not true.  Some countries outside of the US pay for 3 rounds of IVF treatment for couples.  However, some couples never complete the 3 rounds simply because of the stress that goes with it.  Think about that one for a minute.
3. Depression is anger turned inwards.  She did not feel comfortable saying whether or not I am depressed after just meeting me, but she said based on my story it could be very possible.
4. People with Type-A personality (ME) have the worst time dealing with infertility.  These people have lived their whole lives thinking effort=outcome.  Not the case with infertility.  No matter how hard you work at it, you don’t have control over the outcome.
5. Infertility itself is one of the hardest things to battle, throw in recurrent pregnancy loss on top of it and you are dealing with a whole new ball game.
6. Dr. G went through all of the different types of “copers” and asked me to pick out which one sounded most like what I do to cope with my feelings.  Choices were 1.) The denier 2.) The distractor 3.) The problem solver 4.) The socializer 5.) The emotional coper.  I actually had a trait from every category except the denier.  Definitely not me.  But, I had the most characteristics of an emotional coper.  Moving forward, she wants to give me strategies on how to be a positive emotional coper.
7. I am my own worst enemy.  I was explaining to her how I haven’t been very involved in any of my friends current pregnancies, and I said to her, “What’s wrong with me? Why do I act this way? It’s terrible.”  She stopped me right in my tracks and said, “Did you just hear yourself? Did you hear how you are talking to yourself? Would you talk like that to someone else?”  She made me think.  Of course I wouldn’t ask someone else what is wrong with them for feeling a certain way.  She told me I am allowed to feel and act the way I am right now.  I do not need to beat myself up for how I feel.  We will continue to dive further into this at our next session.

I hope to continue posting our main points each week, as it is a method for me to track what I am learning as I go through treatment.

Progress Made

I guess you could say I sort of have my own pregnancy loss recovery “program” going on.  Over the past 5 months, I have slowly been making progress in my recovery efforts, but this week I feel I took a big step.

Months 1-2

The beginning of my recovery program included coming to terms with the fact I was no longer physically pregnant.  This was a brutal, harsh reality, and I thank God everyday that I was able to take a medical leave from work for a month.  It consisted of going from no periods for 3 months, to constant, continual bleeding & cramping, forcing myself to shower daily, trying to buy new clothes and dispose of maternity ones, adjusting my eating, exercising, & medicinal habits, getting accustomed to my new sleep patterns, & so much more.

You go from a baby bump to nothing to show for the bump but extra pounds.

You go from eating like a pig to eating just to survive.

You go from sleeping any chance you get because your baby is growing inside of you, to only sleeping when you self-medicate yourself. 

I also attended grief counseling during this time as part of my recovery.  This helped me understand that the physical anguish I was experiencing was quite normal and common considering what we went through. 

Next, came announcing to the world our infertility, IVF, and RPL secret (aka getting rid of the monkey we had been carrying around on our backs for years).  Lets face it, infertility treatments and recurrent pregnancy loss can become really challenging to hide after a while. Instead of announcing a baby to the world, we were now announcing how many we had lost. This included coming out of the closet with our families, friends, co-workers, social media, etc.  We began to realize we weren’t alone, as many people started coming out of the woodwork with their stories, too.  This part of my recovery program was actually quite soothing because the support we received was overwhelmingly positive.  Phone calls, texts, cards, presents, the works.

Months 3-4

These months centered mainly around 2 things–restoring my relationship with God, and making some decisions about our future. The big guy and I had a lot of sorting out to do.  I can’t lie and say I wasn’t utterly angry and disappointed with Him, because I was.  I was also confused & devastated that He allowed this to happen again.  I had went from talking to Him everyday, to seriously questioning my faith after loss 3.  In fact, I don’t think I ever doubted it so much in my entire life. When my mom or husband would bring Him up, I would tell them to be quiet.  I would tell them He doesn’t hear my prayers obviously anyways, and that His plan must be for me to never be a mother.  I yelled at Him and reminded Him that only He had the power to save our babies and He chose not to. 

Through each cycle and each pregnancy, we not only prayed and spent time with Him everyday, we also gave Him all the glory for those BFP’s. We even told our doctors it was Him who got us pregnant. Why then would He allow this to occur again? Well, I can’t answer that, and thankfully, I no longer have the desire to answer it. I do know there is a reason, but I can’t say I will ever understand it or know it.  And that is OK; I don’t need to understand everything.  I do know that I wouldn’t be sitting here typing right now had we still been pregnant.  I wouldn’t be advocating for this cause.  It took some time, and it’s still a work in progress, but I am so happy to say that my faith has been restored.  I know that He understood why I felt the way I did when we lost our babies and He keeps no record of my wrongs.

  
During this time, we also tried to figure out what went wrong with our pregnancy the best we could so we could prevent it from happening again in the future if possible.  I underwent numerous procedures, operations, blood tests, and doctor appointments.  We were able to eliminate many things off our list that could be causing our issue. We spent time praying and discussing our future options for creating our family-adoption, gestational surrogacy, another FET, a child free life.  We started researching getting second opinions from other RE’s and chose to finally go get one.  We made the decision that I needed to take some time away from my career, and hence, I put in my resignation.  I began to find other things that I enjoy and take pride in doing that do not revolve around us having a baby.  As you can see, a lot of clarity and healing came during this time.

Month 5

This would bring us to the present time.  Healing is definitely still in progress.  This week I made some progress (in my eyes) and I am proud of myself for it.  One of the hardest things for me since our last loss has been being around or talking to or about any pregnant women.  I have declined baby showers.  I have distanced myself from conversations. I have decided that I just could not be a part of any of this.  I have needed to protect myself from unnecessary hurt.  Unfortunately, anyone who has suffered through IF and/or RPL knows these horrible feelings all too well.  Basically, there is no other way to put it other than it sucks!  And I don’t think anyone enjoys feeling this way. 

So, I decided to try to take some small steps with this.  I went online and found my old high school friends baby registry (she is due with her first child in a few weeks).  I sent her some really cute presents and a card.  I did the same thing for a friend that I have recently met here in this wonderful blogging community as well.  In addition, I accepted an invitation to 3-year-old birthday party where another pregnant woman, baby, and children will be present.  I went out and bought him some play dough, a puzzle, and a book for the party.  I must tell you, I felt really great inside when I did each of these things for these special people. It brought me a lot of joy. And while I know that I have a long ways to go still in my healing, I also know that I am farther along than I was before!

  

Always Room for Improvement

Right off the bat, I should say that I know no person is perfect, and no IF clinic is perfect either. Perfection should never be the expectation. However, in any profession, if you aren’t reflecting and trying to improve or do better, that could be a problem. Experience only makes you wiser if you learn from it and apply it to future situations. I know this from being a teacher the past 5 years.

This being said, we have made a list of things we think could be improved upon at our current clinic, or any clinic for that matter.  Here is what we have so far:

1. The most advanced uterine tests should be performed on all patients before IVF. This means a Hysteroscopy should be done on every patient prior to IVF.  You heard me right.  That is our opinion after the hell we have gone through. We are proof in the pudding that an SIS and HSG aren’t always enough.  If we had done this procedure from the start, there would be no questions in our minds or our RE’s if that fibroid had truly been around for all 3 losses or not.  
2. PGD should be offered to all patients before they begin IVF.  Looking back, we were never informed of this option & I wish we had been. We cannot do PGD testing now with our remaining frozen embryos, as it can only be done in the days following the retrieval.  We never knew about this option until we miscarried and started searching the web. Suddenly, we started seeing all of these women who did PGD before transferring.  I mentioned it to my doctor at that point, and found out it was too late to genetically test our embryos.  Since we looked good on paper (under 35, appropriate weight, etc), perhaps it was assumed we would succeed & not need this expensive option added on. If we were to miscarry again, I do not know if I could go through another transfer. Instead we have discussed a surrogate. How much more confident we would feel knowing we were transferring a genetically normal embryo into a surrogate than not! While I get that PGD is not 100% accurate, it should be offered to the patients if it is a service the clinic provides.
3. RE’s should discuss the worst case scenarios upfront with their patients before they begin IVF.  When we began IVF, we were so set on it actually “working” that we didn’t think of anything before that point or after that point. We didn’t discuss that only embryos making it to day 5 or 6 would be kept.  We never talked about the chances of chemical pregnancies, miscarriage, or RPL.  We had no idea we would go through the torture of beta testing and what would need to happen with all that if we ended up pregnant.
4. The RN’s should not do all of the ultrasound monitoring during an IVF cycle.  This is probably common at most clinics simply due to the amount of patients undergoing treatment.  It was never an issue to us before we miscarried either as we do trust our RN.  However, our nurse ended up missing something early on in one of our cycles that our RE probably wouldn’t have if she had been the one doing the ultrasounds to begin with. Moving forward, we have told our RE we will not be monitored by anyone other than her and she has agreed this is best.  If our RE would like to have the nurse with her for another set of eyes, great! Bottom line…I want the person who will be transferring those embryos into my uterus monitoring it before hand. No exceptions.
5. All viable embryos should be considered for transfer.  At our clinic, only embryos that make it to day 5 or 6 are transferred.  On the day of the retrieval you are handed a piece of paper that says “be here on day 6 at _____ am for embryo transfer.”  I know several women who have had successful day 3 or 4 transfers, so I do not think it is fair to limit to just a day 5 or 6 transfer. Thankfully, our 8 embryos made it to day 6, but what if they hadn’t?
6. After retrieval, the embryologist should provide daily updates on how the embryos are doing.  I never once talked to the embryologist for an update. I received a voicemail the day after retrieval with a brief summary, but that was it. Those days after the retrieval are sooo stressful as it is, and remember we had to wait until day 6 not knowing anything. In my opinion, not knowing anything until you show up for the transfer is adding a lot of unnecessary stress to the situation.
7. Get input from the patient about their IVF treatment plan.  Sit down and show patients all of the different “protocols” available for an IVF cycle. Short, mini-stim, antagonist, un-medicated, etc. Tell them the success rates with each. Explain what type of patients you have seen do well on each type of protocol.  Understand that this should not be a “one-size-fits-all” approach.  Ask them questions about their bodies, and act like they are educated. Through this process, I have learned that I know my body better than anyone. Just because Susie did well off all of the drugs you gave her, doesn’t mean I will. Show me what is available, whether it is your preferred method of treatment or not.
8. Clinics should disclose what will happen if you do get a positive beta post IVF.  We never talked about the cost to continue a pregnancy if we achieved one.  We had no clue we would be spending thousands more on medications after the actual IVF cycle itself ended.  Medications are only paid for up until the beta test in case you get a negative.  If you get a positive, you will need meds for 6 more weeks, at least.  That adds up to thousands more.
9. Designate clear roles within the practice.  Since it is so easy to communicate with everyone at the practice (listed as a perk yesterday!), you never know exactly who to talk to about things. For example, we have had prescriptions not called in, called in twice by different staff members, etc. It would be great if each person had a clearly designated role or each patient had a clearly designated go to person.
10. Wellness services should be provided at clinics. Everyone goes into treatment hoping it will work the first time.  But, that is not always the case.  Actually, majority of the time it is not the case.  After all of the emotional and physical trauma, we wished that our clinic offered things like acupuncture, counseling, etc.  Don’t get me wrong, when asked, they provide recommendations, but we have ended up finding our own specialists in these areas.  It would be great if clinics started including these in their treatment packages.

Hind sight is always 20/20. But we hope this list is helpful to those searching for a clinic to call home!