Not quite sure what to think

  Maybe it's just me, but infertility has made me very paranoid about the relationships I have with people.  Am I saying too much?  Am I not saying enough?  Am I making enough effort?  Will they think what I say is crazy and stop talking to me?  You get the point.  I never used to worry about that with my best friend.  We've known each other since we were 3, I can tell her anything.  Lately though, it feels like she's withdrawing from the friendship.  I know her life is in a different place.  She has a 2 year old and another baby on the way.  I can't drag her down with the doom & gloom of infertility. 
    She has another Mommy friend, who has a son the same age as her daughter and a little baby girl.  I'll admit, I get jealous of this other friend.  They have the friendship I always thought my friend and I would have.  Raising our kids together, and having them be best friends like she & I are.  I can't help be feel left behind.  Will I ever catch up and be able to be a part of that?  Will our friendship disappear if I can never participate in that? 
   I asked her if she & her daughter had plans any of the 3 days I am off this week.  I was told that her father in law is in town and staying with them, but she'd let me know if he left. This isnt unusual, but then her other mommy friend posted a photo of them at the park.  I know the photo could've been from another day, but it still hurt my feelings.  Like maybe she'd rather hang out with her mommy friend.
  I suppose she doesn't know that I've been sad.  I can't fault her for that.  It's just hard to reach out when you already feel so isolated.  I suppose it's a good thing that I have a therapist now, but it still doesnt take the place of your best friend.   

Not Broken, Just Bent

A lot of time, I start a new post but end up sitting here staring a the blank screen not knowing what to say.  I suppose that's life with infertility though.  Some days, there are no words to express the feelings.  I met with a therapist last week.  I've done counseling before, when I was dealing with depression and the death of my dad.  The first appointment was just meeting her and her getting the background as to why I'm there (health & family history etc).  When I began my infertility story, I thought I could sum it up really quickly.  I was wrong.  We used the whole session and I have to go back this Weds to finish up.  Then we will set goals and get to work.  I felt better after I left, even if it was only talking about the history.  I just hope this helps. 

Follow up and a Plan

  Yesterday was my follow up with Dr. Kwak-Kim.  She had asked my husband to come with for this appt since I went alone to the first one and cried a bunch.  Not because he wasn't there, but because of a huge mix of fear and relief that I'm not crazy.  Our appt was set for 9, so we left about 1.5 hours before.  Our area has gotten a lot of heavy rain and I wanted to allow a bit more time to get there than the hour it took me the last time.  Well, I still had to call and tell them we'd be late by about 15 minutes.
  When we got there, we were taken back to the conference room almost immediately, save for time for a bathroom stop (hey, it was a long car ride!)  As soon as we were in the room, DH starts making jokes. He has such a great way of cutting the tension.  I'm thankful for him.  Dr. Kwak Kim came in and began talking about my results.
    I have a positive result for antiphospholipid antibody, high TSH level, high testosterone and DHEAs, high NK cells, high TH1/TH2 cells, High PAI-1 level, and a lower end of normal vitamin d level.  So what does this all mean?  It means that I have an genetic tendency towards blood clotting, not an actual clotting disorder, though I do have heterozygous mutations for a few of them.  In my mind, I equate that to having sludgy blood-which makes sense why I have the restricted flow we saw on the ultrasound.  It also means that my immune system is somewhat dysfunctional.  The NK cells job is to get rid of invaders they don't know, which could be our embryos.  Her big concern were the high PAI-1 level and the high DHEA.  I reminded her that when the labs were drawn, I was taking supplemental DHEA and have since stopped.  Apparently I was over supplementing myself so hopefully that will straighten out.
  So what do we do about it?  She started me on Synthoid for my TSH level.  Apparently I'm still in normal range, but just a bit higher than she'd like to see for us trying to have a baby.  I will get that level checked every 2 weeks.  She also started me on Metformin to help the PAI-1 level come down.  She said it should come right down pairing Met with exercise and a low carb diet, as well as losing weight/reducing my BMI.  She also wants me to take vitamin d, fish oil and changed me to a prescription prenatal vitamin.  When it's time for our IVF cycle, she will also have me on prednisone to combat the NK cells.  She'll monitor that level and if it's still not low enough, we will do IVIG infusions.  I will also be on lovenox during the cycle.
  It's been a lot to take in.  I didn't expect her to find so much.  I'm sure I'm not repeating it back the way she did.  It feels good to have a plan again.  Trying to cycle in June is going to cut things too close, so I also called and rescheduled for the July cycle.  When I called the RE, I was told he wants to see me when he's back in the country.  I am afraid he wont let me cycle there since I keep changing my mind and because I'm seeing the RI.  You never know, maybe he's taking an ego hit because Im pulling in another specialist.  The logical side of my brain says he just wants to see me because my CD3 labs are so off.  Either way, it'll be okay.    

It's Raining, It's Pouring.....

   It's been raining pretty hard here the past couple days.  I've also had a pretty bad headache.  I'm sure it's a combination of the weather & the fact that AF is on her way out.  Either way, it's all seemed to cause a bit of a panic attack.  When AF showed, I had to call my RE and let them know so they could fix the dates in my protocol and tell me when to start meds again.  Since I happened to be off on CD3, I asked them if we could check my cd3 labs.  We haven't checked in awhile and I'm curious where my FSH and LH are, especially since we saw all those cysts.  They agreed to draw them, which went fine.  My nurse called me yesterday to verify when I stopped my BCPs and told me my FSH level is 20.  That's just shy of doubled from the last time we checked.  She told me that's normal, since I was on bcp, however, that made me nervous.  I always thought that BCPs were supposed to quiet everything down.  I've been on BCP like all year, shouldn't my levels be low and everything quiet?
   Of course this caused some panic.  My lh level was 10.  Typically with PCOS (which isn't my diagnosis yet) there's a 1:1 ratio of FSH:LH.  On that theory, I'm fine.  Dr. Google isn't helpful at all.  I have spent the day trying to come up with a gameplan.  I started by looking for a therapist.  The problem I run into there is finding one that has a background in infertility.  This search brought up acupuncture which lead to diet....you see where this is going right?  I feel like I'm just a hot mess.
  I did manage to find a counselor group nearby that has one counselor that listed fertility as in interest.  I'm hoping that she has some idea about how this all works.  Hopefully it helps to talk to someone not involved.  I need to figure out this mess in my head before it consumes me.
  I have no clue what to make out of my diet.  The RI suggested low carb.  I can handle that.  Then I go to the chiropractor who says I should also cut out dairy.  Then I read on an acupuncturist's webpage how I should cut out gluten too.  WTF am I supposed to eat?  I'm going to end up with an eating disorder instead of a baby!  So what happens instead?  I freak out & stress eat.  It's a vicious cycle.
  I see the RI tomorrow to create our plan.  Hopefully that'll help me feel better.  I hate not having a plan.  I'm curious what she'll have to say.  The lab results still aren't in the patient portal, so hopefully she just hasn't reviewed them yet.  I'd like to hope that if they weren't in they would call & reschedule me.  I guess we'll see.  

Definition of Infertility

I found this on another blog and wanted to share it with you.  I think it was pretty dead on.

A Letter to Family & Friends 
- by Jody Earle


I want to share my feelings about infertility with you, because I want you to understand my struggle. I know that understanding infertility is difficult; there are times when it seems even I don't understand. This struggle has provoked intense and unfamiliar feelings in me and I fear that my reactions to these feelings might be misunderstood. I hope my ability to cope and your ability to understand will improve as I share my feelings with you. I want you to understand.

You may describe me this way: obsessed, moody, helpless, depressed, envious, too serious, obnoxious, aggressive, antagonistic, and cynical. These aren't very admirable traits; no wonder your understanding of my infertility is difficult. I prefer to describe me this way: confused, rushed and impatient, afraid, isolated and alone, guilty and ashamed, angry, sad and hopeless, and unsettled.

My infertility makes me feel confused. I always assumed I was fertile. I've spent years avoiding pregnancy and now it seems ironic that I can't conceive. I hope this will be a brief difficulty with a simple solution such as poor timing. I feel confused about whether I want to be pregnant or whether I want to be a parent. Surely if I try harder, try longer, try better and smarter, I will have a baby.

My infertility makes me feel rushed and impatient. I learned of my infertility only after I'd been trying to become pregnant for some time. My life-plan suddenly is behind schedule. I waited to become a parent and now I must wait again. I wait for medical appointments, wait for tests, wait for treatments, wait for other treatments, wait for my period not to come, wait for my partner not to be out of town and wait for pregnancy. At best, I have only twelve opportunities each year. How old will I be when I finish having my family?

My infertility makes me feel afraid. Infertility is full of unknowns, and I'm frightened because I need some definite answers. How long will this last? What if I'm never a parent? What humiliation must I endure? What pain must I suffer? Why do drugs I take to help me, make me feel worse? Why can't my body do the things that my mind wants it to do? Why do I hurt so much? I'm afraid of my feelings, afraid of my undependable body and afraid of my future.

My infertility makes me feel isolated and alone. Reminders of babies are everywhere. I must be the only one enduring this invisible curse. I stay away from others, because everything makes me hurt. No one knows how horrible is my pain. Even though I'm usually a clear thinker, I find myself being lured by superstitions and promises. I think I'm losing perspective. I feel so alone and I wonder if I'll survive this.

My infertility makes me feel guilty and ashamed. Frequently I forget that infertility is a medical problem and should be treated as one. Infertility destroys my self esteem and I feel like a failure. Why am I being punished? What did I do to deserve this? Am I not worthy of a baby? Am I not a good sexual partner? Will my partner want to remain with me? Is this the end of my family lineage? Will my family be ashamed of me? It is easy to lose self-confidence and to feel ashamed.

My infertility makes me feel angry. Everything makes me angry, and I know much of my anger is misdirected. I'm angry at my body because it has betrayed me even though I've always taken care of it. I'm angry at my partner because we can't seem to feel the same about infertility at the same time. I want and need an advocate to help me. I'm angry at my family because they've always sheltered and protected me from terrible pain. My younger sibling is pregnant; my mother wants a family reunion to show off her grandchildren and my grandparents want to pass down family heirlooms. I'm angry at my medical caregivers, because it seems that they control my future. They humiliate me, inflict pain on me, pry into my privacy, patronize me, and sometimes forget who I am. How can I impress on them how important parenting is to me? I'm angry at my expenses; infertility treatment is extremely expensive. My financial resources may determine my family size. My insurance company isn't cooperative, and I must make so many sacrifices to pay the medical bills. I can't miss any more work, or I'll lose my job. I can't go to a specialist, because it means more travel time, more missed work, and greater expenses. Finally, I'm angry at everyone else. Everyone has opinions about my inability to become a parent. Everyone has easy solutions. Everyone seems to know too little and say too much.

My infertility makes me feel sad and hopeless. Infertility feels like I've lost my future, and no one knows of my sadness. I feel hopeless; infertility robs me of my energy. I've never cried so much nor so easily. I'm sad that my infertility places my marriage under so much strain. I'm sad that my infertility requires me to be so self-centered. I'm sad that I've ignored many friendships because this struggle hurts so much and demands so much energy. Friends with children prefer the company of other families with children. I'm surrounded by babies, pregnant women, playgrounds, baby showers, birth stories, kids' movies, birthday parties and much more. I feel so sad and hopeless.

My infertility makes me feel unsettled. My life is on hold. Making decisions about my immediate and my long-term future seems impossible. I can't decide about education, career, purchasing a home, pursuing a hobby, getting a pet, vacations, business trips and house guests. The more I struggle with my infertility, the less control I have. This struggle has no timetable; the treatments have no guarantees. The only sure things are that I need to be near my partner at fertile times and near my doctor at treatment times. Should I pursue adoption? Should I take expensive drugs? Should I pursue more specialized and costly medical intervention? It feels unsettling to have no clear, easy answers or guarantees.

Occasionally I feel my panic subside. I'm learning some helpful ways to cope; I'm now convinced I'm not crazy, and I believe I'll survive. I'm learning to listen to my body and to be assertive, not aggressive, about my needs. I'm realizing that good medical care and good emotional care are not necessarily found in the same place. I'm trying to be more than an infertile person gaining enthusiasm, joyfulness, and zest for life.

You can help me. I know you care about me and I know my infertility affects our relationship. My sadness causes you sadness; what hurts me, hurts you, too. I believe we can help each other through this sadness. Individually we both seem quite powerless, but together we can be stronger. Maybe some of these hints will help us to better understand infertility.

I need you to be a listener. Talking about my struggle helps me to make decisions. Let me know you are available for me. It's difficult for me to expose my private thoughts if you are rushed or have a deadline for the end of our conversation. Please don't tell me of all the worse things that have happened to others or how easily someone else's infertility was solved. Every case is individual. Please don't just give advice; instead, guide me with your questions. Assure me that you respect my confidences, and then be certain that you deserve my trust. While listening try to maintain an open mind. 


I need you to be supportive. Understand that my decisions aren't made casually,I've agonized over them. Remind me that you respect these decisions even if you disagree with them, because you know they are made carefully. Don't ask me, "Are you sure?" Repeatedly remind me that you love me no matter what. I need to hear it so badly. Let me know you understand that this is very hard work. Help me realize that I may need additional support from professional caregivers and appropriate organizations. Perhaps you can suggest resources. You might also need support for yourself, and I fear I'm unable to provide it for you; please don't expect me to do so. Help me to keep sight of my goal.

I need you to be comfortable with me, and then I also will feel more comfortable. Talking about infertility sometimes feels awkward. Are you worried you might say the wrong thing? Share those feelings with me. Ask me if I want to talk. Sometimes I will want to, and sometimes I won't, but it will remind me that you care.

I need you to be sensitive. Although I may joke about infertility to help myself cope, it doesn't seem as funny when others joke about it. Please don't tease me with remarks like, "You don't seem to know how to do it." Don't trivialize my struggle by saying, "I'd be glad to give you one of my kids." It's no comfort to hear empty reassurances like, "You'll be a parent by this time next year." Don't minimize my feelings with, "You shouldn't be so unhappy." For now, don't push me into uncomfortable situations like baby showers or family reunions. I already feel sad and guilty; please don't also make me feel guilty for disappointing you.

I need you to be honest with me. Let me know that you may need time to adjust to some of my decisions. I also needed adjustment time. If there are things you don't understand, say so. Please be gentle when you guide me to be realistic about things I can't change such as my age, some medical conditions, financial resources, and employment obligations. Don't hide information about others' pregnancies from me. Although such news makes me feel very sad, it feels worse when you leave me out.

I need you to be informed. Your advice and suggestions are only frustrating to me me if they aren't based on fact. Be well informed so you can educate others when they make remarks based on myths. Don't let anyone tell you that my infertility will be cured if I relax and adopt. Don't tell me this is God's will. Don't ask me to justify my need to parent. Don't criticize my course of action or my choice of physician even though I may do that myself. Reassure yourself that I am also searching for plenty of information which helps me make more knowledgeable decisions about my options.

I need you to be patient. Remember that working through infertility is a process. It takes time. There are no guarantees, no package deals, no complete kits, no one right answer, and no "quickie" choices. My needs change; my choices change. Yesterday I demanded privacy, but today I need you for strength. You have many feelings about infertility, and I do too. Please allow me to have anger, joy, sadness, and hope. Don't minimize or evaluate my feelings. Just allow me to have them, and give me time.

I need you to be strengthening by boosting my self esteem. My sense of worthlessness hampers my ability to take charge. My personal privacy has repeatedly been invaded. I've been subjected to postcoital exams, semen collection in waiting room bathrooms, and tests in rooms next to labor rooms. Enjoyable experiences with you such as a lunch date, a shopping trip, or a visit to a museum help me feel normal.

Encourage me to maintain my sense of humor; guide me to find joys. Celebrate with me my successes, even ones as small as making it through a medical appointment without crying. Remind me that I am more than an infertile person. Help me by sharing your strength.

Eventually I will be beyond the struggle of infertility. I know my infertility will never completely go away because it will change my life. I won't be able to return to the person I was before infertility, but I also will no longer be controlled by this struggle. I will leave the struggle behind me, and from that I will have improved my skills for empathy, patience, resilience, forgiveness, decision-making and self-assessment. I feel grateful that you are trying to ease my journey through this infertility struggle by giving me your understanding.
Jody Earle

Dark place

Hello everyone.  I am sorry for the darkness of my last entry.  I know that this time of year is rough for me, and tossing infertility in with the mix can allow for quite the pity party.  I promise, I'm working on it.

I have been less angry lately.  Which would be great, if I hadn't traded anger for anxiety.  I thought I already hit the acceptance stage, so why does it feel like I am just cycling through the stages of grief?

10 years

   10 years ago today I was getting off the train, coming back from college.  It wasn't for spring break though.  I was a freshman in college and I was coming back because we were removing my dad from life support.  2 weeks prior, my dad suffered a massive heart attack when he went out to get the mail.  When he collapsed, my mom thought he just fell, as he had weakness in one of his legs from a prior back surgery.  It wasn't until an off duty firefighter pulled over and began CPR that she knew something was wrong.  They did get a heartbeat back but the time his brain spent without oxygen was too long.
  My dad spent 2 weeks in the ICU, hooked up to IVs, a ventilator and such all to sustain his life.  Multiple tests were done, but in the end, his brain had been deprived of oxygen too long and the electrical activity was minimal.  My dad was brain dead.  I think a part of me wanted to stay in denial.  He had been sick and on a ventilator a few times before, for pneumonia and for congestive heart failure, and had always gotten better.  I had come back the day after the heart attack.  My brother was 15 at the time, and someone needed to be around for him since my mom was living at the hospital.  Jeremy and I had just started dating about 5 months prior.  Both of us missed class and he brought me home.
  I returned to campus after almost 2 weeks to tie up my loose ends, stayed the night and then returned home the next day.  The ventilator was removed and we waited.  Part of me wanted to believe that there would be a miracle, and he'd wake up.  My dad passed away around 1:20 that afternoon.

  It's hard to believe that was all 10 years ago, when some days it feels so fresh and vivid.  I miss him terribly.  Especially on holidays or special days like our or my brother's wedding day.  I can say though, that I am so proud of the people he & I turned into.  I worried that losing my dad so young would have really been detrimental to my brother.  However, he excelled at everything he tried-sports, school, you name it.  He is an amazing cop now, with a wonderful wife and a baby on the way.  I know that because of losing Dad so young, he will make it a point to be the most amazing father.  I'm not worried about that at all.  I am sad that his baby (and hopefully mine someday) won't know their grandpa.  I know my dad would have been the best grandpa.  I suppose it's up to us to let our children know what he was like.
   I can honestly now say I am proud of who I turned into because of losing him.  When he passed, I was in the middle of dealing with clinical depression.  Needless to say, it got worse after he passed.  There were days I couldn't get out of bed.  I ended up having to withdraw from most of my classes and chose not to return to the University in the fall.  I began working as a CNA in the NICU I'm in now, just to have a job and to try to turn my life around.  I found nursing, and worked my way through school.  It may have taken 7 years, but I finished a college degree, passed my state boards and have become a wonderful nurse with a wonderful husband.  
   I am stronger now than I was back then.  There's no way I would've been strong enough to deal with infertility back then.  That is something I can be thankful for.  I know my dad is on my side, helping me through.  I just wish he'd get the lead out already!