Better...

I'm getting more excited about the holidays. Maybe because I'm wrapping up my shopping and there are presents under the tree. I always get excited to give presents to people and find a good gift for the hard-to-shop-for. I feel better about the holidays and I'm looking forward to them more now. My sister is spending Christmas with us and I'm excited about that and love to spend time with her. I feel lucky to be where I am and to have a warm home and a job and an education (continuing education even) and those are just touching on the blessing that are "things" and as they say...The greatest things in this world are not things.

I look forward to the coming year and to finish school and hopefully to come a few steps closer to our goal. Merry Christmas in the meantime :)

Our Christmas Decor...Andrea, Jeff, Michelle and Thor's stockings all hung with care...in hopes that Saint Nicholas soon will be there

Holiday Bah-hum-bug

I have to say that between being away from my parents and all the wanting-a-kid-that-I-can't-have right now and then not knowing if this time next year will be the same way or the year after that too and so on...I'm not a big fan of the holidays. It isn't as bad as it could be...it can always be worse right? I have a loving husband, a dog who is spoiled rotten and family who cares and that I can count on. Lately I just feel more like there is that missing piece and that I want more. I don't have crazy envy of those with children like I did the Christmas right after being diagnosed (man that was depressing). I just have anxiety. I worry that it will never happen, I worry about the possibility of it happening, I worry that I'll get my hopes up and they'll be deflated all over again.

The holidays and especially Christmas have so much to do with family and kids. I can completely see why it would be hard to go through the holidays without all of that in tow. I get the question of having kids more often lately. I guess after two years of marriage it's pretty common and harder (at least in LDS/Mormon culture) to pawn off on enjoying married life still, although I am. I also just have the feeling that those who aren't asking are assuming that something isn't right. I don't know which is worse being asked and able to throw out my defense mechanism answers of "oh goodness not yet" or "I want to finish school and get a real job first" or just being ignored altogether when it comes to the topic.

I'm also not really into the church related side of the holidays so much either. I believe in God and I believe in a plan to life and an afterlife and being with family and loved ones. But I don't want to be around those that just take it all for granted. I don't want to hear the lessons and lectures about family and how it's such a blessing. If it's such a blessing then does that mean Jeff and I have been cursed because we can't? If we're given trials to help us grow then why do I feel like, at least when it comes to church, that I have digressed so much? I don't know. I think it's good that we're taking time to figure this out and that I don't feel the pressure that I did to "have a family" and "being a mother is your most important role and calling" kind of thing that it felt like before. I hope it gets better eventually but right now I think I am fine giving God the silent treatment and I believe that if He loves us unconditionally and knows everything the way they say He does that He understands how we feel and still loves us and will be there when we want to talk again.

Karma and Misfortune

I don't know if I really believe in karma and I don't really believe that this is a case of karma but more of misfortune. Misfortune and odds. After all I know far too many women who seem to get pregnant easily to not know more women who don't. It was bound to happen right?

A good friend of mine (who shall remain nameless) recently began asking me more about how I came to be diagnosed with POF...what tests they did and what else they thought it might be. I of course became curious why they were asking and came to find out they had been trying to get pregnant and that she had missed periods without the happy following of a positive pregnancy test. I explained the rarity of POF and the other possible outcomes this might be. I did my best to be supportive while in my head this little voice said "karma's a bitch". I'm sure this friend had tried be supportive with my POF diagnosis but I always felt belittled and diminished when I talked about it with her. After all according to her it was worse to have bad in-laws than infertility and remodeling often came with a 50-60% risk of not getting what you paid for. I'm sure it was just a hopeful way to relate to me and a miserable attempt at showing empathy when all I really wanted to hear was "I'm sorry" or "That sucks". I don't remember hearing those the first time around...maybe because the hurtful things stick out so well in my memory. But as we talked about the possibilities and her feelings towards it I heard "I'm sorry you had to go through this"(even with that I laughed a little inside thinking "uh yah...STILL going through it"). But it still felt strangely healing. Healing for me to hear and to actually feel understood a little by her. This wasn't some small little thing in one's life. It wasn't comparable to other things and it wasn't a bid for competition or attention. It sucked! It hurt! It wasn't easy.

She had an appointment a couple weeks later and some blood work results a week or so after that. Come to find out she has PCOS and will be going on some medication to help regulate things. I've heard very hopeful things about this medication and of it fixing things and working relatively quickly. So come January when she's off the birth control again (used to regulate her body) I imagine that she will be coming out with some "happy news". I will be happy for her (I hope) but I wonder if the understanding will remain or if it will be back to minimizing or trying to debunk the worries that I have. I imagine that I will just continue to refrain from talking to her about my POF issues due to the feelings of dislike and anger that her resulting comments usually instill in me.

My Life is a Monet

I think in analogies a lot it seems. I have emailed a fellow POFer and good friend, J, for over a year now. We sometimes talk about how messy and crazy POF can be and how it makes your life feel out of sorts, maddening, saddening and totally unpredictable. We also often hope together. Hope for the luck and blessing to have a family, hope for better health and understanding and outcomes of POF and hope for things to turn out in general. We talk about how someday we'll look back at the hardship of it all and be completely grateful and see the beauty of how it turned out. I told her the other day that our lives are like Monet's (coming from the movie Clueless). They are kind of messy and not always pretty close up but when you look back on them or have some distance between yourself and the mess then it can be beautiful. I hope I can look back at the "art" of life in the long run.

Grant application

I suppose it doesn't matter now to put this on here. Jeff and I applied for a Family Building Grant from the Tinina Kade Foundation in August. We didn't tell anyone because we didn't want to have anyone waiting on it but us. We filled out a big application and got a referral letter from Dr. Gibson. The foundation is able to give up to $10,000 to the families awarded (last year they gave awards to 8 families). With our savings and finances in mind we requested $8,000. They were to notify those awarded by the end of October and the "winners" were supposed to fly to Washington D.C. for the formal awards on January 2nd. We received a confirmation of receipt email with 42 other applicants CC'd (yah not high marks on the privacy) and so we considered that perhaps that was all that had applied. We were more hopeful because of this.

We found out around October 17th that we were not being awarded anything. There were actually 130+ applicants. I guess we didn't really expect to get it but it still was a blow to our hopes. I wish there was a way to know why. I felt a little like the idea of donor egg stuff may have put us at a disadvantage. It is not really looked on with a positive light by most media I know of. It feels like we're never going to get anywhere on this. I know we will but right now it just stinks. With our budget right now we have no money that can go towards savings. I think the grant application and writing short essays on why we wanted it and thought we'd be good parents and such got us both more hopeful and thinking about the possibility more realistically. I know it did for me. Perhaps that's why it was an even worse let down. We do still have a good chunk of savings and despite money being tight we don't touch it which is a blessing. Hopefully soon we'll get where we need to be.

My greatest blessing...

My greatest blessing right now is Jeff. Having a husband who supports me no matter what and never complains is the biggest blessing. He doesn't complain about the fact that money is tighter now with me going back to school and that we can't afford things like we did before. He doesn't complain that my time is spent with work and school for the most part. He is just always very supportive and patient with me. I love him so much and I'm so grateful to have him in my life. We talked a while back about how things were and we were with POI before we got married. He told me that when he was thinking about marrying me that he thought of how POI could mean we might never have kids AT ALL (on our own or with DE IVF or adoption). He wanted to be with me despite all of that. How many women can be ironically "lucky" enough to know that...that their husband loved them enough even faced with that type of possibility that they still stuck by their side. I love Jeff so much and I'm so grateful that we're in this life together!!

Feeling Good

I've noticed with POI that I seem to have gained more weight in my middle. I've heard this is a common complaint too with POF/POI women. I think it stinks...as you can't get pregnant but you get a spare tire or other weight gaining which then leads some people to think you might be and the real morons (yes clerk at Walmart I'm thinking of you...despite it being like a year ago you bug me) to actually ask if you are. Anyway I have been trying to watch what I eat (something I've never really worried about before) and I feel like it's helping. Okay so no huge improvements but just feeling better about it. I need more dedication to get exercising too as I know that would help. That will be my next goal. Yeah me!

I am back in school (maybe I never mentioned it on this blog) but I quit my social work job due to major stress and emotional mess I became. I went back to retail part-time for work (don't get me started on how the difference in pay really sucks) and back to school. I really enjoy my classes and I love learning but I also don't like putting money into something (no matter the hopefully short term of it) when I would really rather put it into savings. Some is going to a student loan though and I will try to balance out the rest. At least we haven't used any savings so that is good. I don't know just having a feeling good about things day and it's always good to share those days.

What loss?

I have been thinking about how my attitude has changed a lot since originally being diagnosed with POI (primary ovarian insufficiency; this is the term I should use since the medical community is trying to adopt it). I think the thing that hit me the hardest back in the day was the loss of genetic connection to a child. I was heartbroken over not having a child to look or behave like me. Now a couple years later I kind of think of how self-centered that seems. Sure there will be people who try to tell us that our child looks just like me or nothing like me (whatever the case may be) but who cares. Our child will be just that...our child. He or she may have not been created in the same way that a majority of babies are but that won't change one iota of how much we wanted them and worked for them and how much they are our child as we are their parents.

I was thinking at work the other day about how I'm just excited to be a mom someday. And as I was thinking about it I realized that the genetic factor didn't enter my mind at all, in fact I was even more excited to think of how this child may take on some aspects, appearance, personality and health wise, that I wouldn't be able to give them. That although I hope our kids will look a lot like Jeff, I'm very curious to see the peices of them that will be a mystery. It was like I didn't feel a loss anymore (although I'm still jilted at the healthcare and insurance system hehe).

I just want to be a mom someday. I don't know when that will be and I don't know how it will happen but I believe it will. I'm excited to see what this wonderful child will look like and be like. I'm even more excited to share that whole process and experience with Jeff. I think we will make great parents some day. I hope that day isn't as far off as it seems at times though.

How to be Supportive of Infertility

I was going through old emails and clearing out my inbox and came across one that someone sent me in reply to a complaint of a friend who I felt minimized me when I talked to her about how difficult POF and infertility issues have been. I think it's worth posting here. It is an article Resolve did on how to be supportive and gives a good view of what it's like for those that face infertility. It is however long so I won't take up all the space here. Here's the link:

http://www.resolve.org/site/PageServer?pagename=lrn_ffaf_ie

Long Term Outlook

POF has many facets for how it affects your life. Your ovaries basically shut down or stop working. This means that eggs aren't formed and it is the formation process (monthly cylce) and an active ovary that produces most of estrogen in a womans body and also produces some testosterone and other hormones. Without estrogen you run into problems with absorption of calcium and maintaining bone density and also cardiovascular risk. Basically you become prone to the same issues that a menopausal woman becomes susceptible to...but with POF you are at risk 20-30 years sooner. Most women with POF take Hormone Replacement Therapy (HRT) in order to counter the risks but even then you are still at risk of osteoperosis and heart disease. It's scary stuff.

I remember when I got over the initial infertility issue enough to worry about my health that I was terrified I'd have osteoperosis and I worried about POF upping my risks of hereditary heart problems. I asked my doctor about getting a DEXA scan (bone scan) for osteoperosis and he said it was unnecessary and I should be fine. That was another reason that Jeff and I went to the NIH in Washington D.C. because they performed standard tests for POF free of charge for their study. They realized that osteoperosis is a risk even in a 27 year old (at the time) woman when it comes to POF. Luckily I tested normal for bone density at the time but I should be retested every few years and take proactive measures like weight bearing exercise.

Anyway enough rambling. Basically this post was just to say that I am doing a research paper for my college course Biomed Core (biology and physiology) and I chose to do this on the long term health risks of Premature Ovarian Failure. I think it will be good for me to get more information and I've researched it before so I already know a lot of the material. I am interested to find out more detail about the risks though.

Misconceptions

Over the past week I have talked to a couple of friends about the POF situation and I'm always kind of surprised at the misconceptions people have. Even after just talking in detail to one friend about the idea of chosing a donor that might look similar to me, a couple minutes later she says that she hopes that our kids will have my blue eyse. I don't understand what part of donor egg people don't get. It means that the starter cells will not have my DNA or my genes and therefore there is no possibility that the child will have "my" blue eyes.

Then in a conversation with a different friend about her house remodel she comments "we're saving for our house and you're saving for a baby". I asked how much her house remodel had cost so far (around $10k) and didn't bring up the cost difference alone that there was because I knew she would argue it. Instead I just say "well at least when you save the money and put it out there you're guaranteed a finished product" and she says "not necessarily". Uh...yes you are. You might have other projects and more money to go into it but generally speaking in terms of retail sales (Home Depot/Lowes included) you get what you pay for. Seriously where's the argument there? That is another misconception that really bothers me. People just think IVF is 100% effective and the solution. When in reality the average nationwide success rate is about 40% (only double the 20% success rate expected each month for regular couples) and 15,000 times the cost. It's not always a solution and it's not cheap. easy or guaranteed.

I have decided that I need to not worry about it though. People will never understand what it's like or the facts of it unless they've been there. I used to think it was worth educating my friends on, at least those I felt okay talking to. But with my friends it seems to go in one ear and out the other. I need to not be offended so much when people don't understand. I think I'm to the point where I don't feel a need to complain about it (at least for now hehe) because I feel more hopeful that things will work out.

Infertility video that I put together...

Keep On Keeping On

Well...things have calmed down since the last post. We're still not impressed with the experience at UCRM clinic but they have come back from it with a positive light. Dr. G and even the specialist, Nurse G, have both made apologies and efforts to correct things. I feel better about them and just wish that "appointment" had never happened (even though it never did haha). I look forward to a second chance and hopefully it won't be too awkward.

We are doing okay on savings still, even though I am not employed right now. My annual vacation pay went into savings and now we are sitting a little more then half-way to the goal of $20K. Gosh it still astonishes me how much this is going to cost. Sometimes I think of the money and that it's just a chance not even a guarantee. But most of the time I don't really consider how much money it is so much as how it would be to have it work. I am trying not to be jaded on the fact it is so much easier for so many people. I am trying to focus more on the fact that this will be a unique experience that not many people are given and that when we get to have a child from this that there will never be any doubt that we wanted and worked to have it happen.

The donor specialist "appointment"

Jeff and I tried to go to an appointment with the egg donor specialist yesterday. Emphasis is on "tried". What a joke. We sat in the waiting room for 45 minutes before Jeff asked the receptionist what was going on. Then we waited another 10 minutes before the specialist called us in. Then she apologized and had the nerve to tell us she didn't know about the appointment and didn't have it written down. She proceded to try and ask me about history and the doctor we were working with and told me she didn't have my file available either...I guess I shouldn't have expected her to since she didn't have the appointment written down. But I think it just sunk in at that point and really set me off. I snapped at her and said "Are you kidding me? You don't have my file and you're not even prepared for this meeting? Forget it! We're leaving!" And I got up and stormed out of her office and out of the Clinic office with Jeff following behind me. I was livid and it just annoys me. You set an appointment expecting them to have information and to get answers...stuff you've been thinking about and looking forward to learning more about for a few weeks or more and then they totally drop the ball. I contacted Dr. G's office and asked them who to file a formal complaint with and we're going that route.

We even considered other clinics but the only other one in Utah doesn't have the best success rates or experience with donor egg and it costs more. The one's outside of Utah cost around $32k and that's not including travel expense, etc. So in the long run it looks like we are stuck with this clinic. I will definitely be checking on how involved this woman would be in a cycle though...like if she monitors or has anything to do with it past selecting a donor then I will be expressing my concerns left and right.

Worries...

I am just feeling worried about things right now. I'm worried about my job...or lack thereof. I know that quitting DCFS was the right thing to do but I'm stressed that I don't have a concrete plan of attack now. I'm worried about money...money to get by, money to save and money that is in savings and if it will be able to stay there. I realize I'm just getting discouraged and I know it'll be okay and better in the long run.

We also have an appointment with the egg donor specialist on Monday. We aren't planning to pursue anything anytime soon but we want to get a better idea of what we are getting into. I'm not sure how I will take the appointment. I don't think I've had a doctor's appointment regarding POF that I haven't cried at. I want to know what to expect and I want to be excited about all of these things but I'm just really nervous too.

Seemingly normal

I stopped taking my HRT (hormone replacement) a couple weeks ago. I had some issues with breakthrough periods...most likely from not replacing patches and forgetting them because of how stressed I've been lately. I decided to stop taking the HRT for a while and get a fresh start in a month or so. I also don't know what I will do with HRT since I will be quitting my job next week and insurance will be an issue.

The thing that bothers me is that I feel fine still. Most women with POF go off of HRT and they start feeling like crap and having hot flashes and such. I didn't have signs when POF struck me (besides missing periods) and I don't seem to be having issues now. My joints are a little more achey but I don't know if that's a symptom or just a random thing. It just is irritating...I almost wish I felt more crappy off of HRT because I feel like then it would be more concrete that something is wrong with my body. But instead on the outside I am seemingly normal...despite having mixed up and menopausal level hormones going on inside my body.

Officially infertile

So by medical definition you aren't considered infertile until you haven't gotten pregnant after a year without protection or birth control. We've officially hit that mark now. It was about this time last year that we met up with the reproductive endocrinologist (RE) and I refused to stay on birth control. Dr. Gibson wanted me to just stay on birth control as a form of hormone replacement and, in my opinion, so I didn't hang onto the slim chance of hope I had at the time. It took some arguing and explaining how I felt to convince him but here I am today with no such luck anyway. But despite not being one of the 5-8% with POF who get pregnant (yet) without assistance I am glad that I didn't shut the door on that chance because I would feel worse knowing I might have prevented that chance. I don't see it happening anymore so much...don't really worry about it and don't take pregnancy tests when things don't happen with HRT the way they are supposed to.

We're about 1/2 way to our goal of savings though so that is good. I still wonder and worry if it will actually work. Honestly it will work, something will work, eventually...we just don't know when. I still don't even know that I want to have kids really...I mean at least right now...so that's a good thing too I suppose. I was watching Maury today (haha yah I know) and it was one of those lame episodes of testing to see who the father is. I had this weird thought that even if I get pregnant with a donor egg and have a baby that Maury could run one of these tests and I wouldn't come up as the mother. I mean I know that doesn't matter and I know it will be my baby just the same but it was just a weird thought. I guess when we have the funds then we can start looking forward to having kids and we can work out all of the little details.

Despite my complaints...

I have little to really truly complain about despite that I do complain. I suppose I've been thinking this due to amount of complaining that I read on infertility boards that I belong to. I already feel or know that I can't change my situation so why be bitter or begrudge people who aren't faced with infertility. Yes I still hold ill feelings toward the women who abuse or neglect their children and I even have moments when I think that parents who have their kids repeatedly taken away and parental right terminated should be sterilized. Perhaps that is another part of the reason why I am quitting my job (I work child protective services and see the worst of parents). But in the end complaining doesn't solve my situation. The only thing that solves my situation is to make the best of it. That's what we're doing. Jeff and I make the best of what we have and I think we do a fine job of it. I am grateful for a strong marriage and a good husband.

I don't enjoy reading or hearing of how women with infertility feel it's injustice that a unmarried girl got pregnant or a woman with one child already that can't keep an immaculate house doesn't deserve to have another. These women didn't get pregnant to spite you. It's just how the cards fell. I'm sure there are many things that we just don't understand in this life. But I really don't think that focusing on another's blessings will help us to realize our own. To realize our own blessings we have to keep our focus inward and our faith upward. I hope that I can do that.

All the small things

I was just thinking how a lot of things I do and think about or decide on come back to this POF journey that Jeff and I are now on and the chance at having a family someday. I hate my job right now and I'm on the border of quitting. I get discouraged at the thought though because I think how will we save more money for donor IVF or adoption if I'm making less money. But then I think of how it can't be healthy for my body to be under this kind of stress all the time. The doctors have never been able to determine the cause of my ovarian failure was autoimmune but I have a feeling that it is and stress just makes autoimmune things worse generally.

I wonder what it would be like to just have kids the "old fashioned" way also. To just picture these future kids that are like both Jeff and I. To not have to save thousands of dollars for the chance at having kids. What would it be like? I don't ever think of having kids that will look like me. A friend made a comment about how Jeff and I wouldn't be able to have short kids if we tried (since we're both over 6 feet tall) and I just bit my tongue and rolled my eyes since he's aware of the ovarian failure and donor egg stuff. I mean who knows what the other half of this kid could be like. I don't play a genetic role in that at all. I know that people just don't understand what that means but it frustrates me still.

Then I have a friend who works for LDS Family Services with birthparents and adoption. I asked her about openings and applied but then I started thinking...how would I be in that capacity? Would I help or hurt the situation? Would it be beneficial or hurtful to me? I started reading stories on her blog the other day and just felt tearful and depressed. I don't see how I could find this a less stressful option then I'm already in. Social work, or at least the options I work with or used to consider a good match, just don't fit me anymore. All because of this new outlook and position I'm in. Nothing seems to be going right anymore.

Support Groups

I was just thinking today how grateful I am for support groups. I never really saw myself belonging to one. But then POF came along and I felt I had no where to turn and absolutely no one who knew what it felt like to have this happen. When I found the POF support group online I didn't feel like such a freak of nature anymore. And honestly the ability to know I wasn't alone and have others to relate is what really made me start coming out of the depression I'd fallen into and start getting back to living my life. I've met some wonderful women through that site and gained support from a network that wouldn't be possible if it weren't for modern technology and the internet.

In my patriarchal blessing through the LDS church it says something about how I will be blessed by the time and age of technology that I am born into. I haven't really thought about that a lot before until now but I am blessed by having modern technology, modern medicine and advances in these areas. And because of this I can still make the choice to pursue having children that will be nourished by my body and be part of me even if not biologically, despite POF. I guess that's why I can't believe that donor egg invitro is wrong. I believe in adoption just as whole heartedly but I also believe I was born at this time so that I could have the choice.

For unto US a child is born...

This is a thought from Krista Oakes who wrote a book on infertility from an LDS perspective. The thought came from a message board that I follow sometimes. Anyway it just really lifted my spirits this season and I wanted to leave it here for others to enjoy also:

Christmas is all about a baby who was born under normally impossible conditions. Mary was a virgin and as such had a 0% chance of conceiving naturally. But God had a plan, and the miracle happened. The baby we celebrate at Christmas is our Savior, who lived and took upon himself all that we must bear in this life. He triumphed over it all. He is the great source of hope for us, no matter our circumstance. As the scriptures say, "for unto US a child is born." He was born for all of us, and I am happy to celebrate his coming into the world. There are so many things that can distract us from that reality of Christmas, but if we keep our eye on the Savior it is a joyous time of year.

I also love the Christmas story, because it tells us of another baby who was born -- this time to Elisabeth, who was post-menopausal. You've heard me talk about their story before. She and her husband Zacharias were righteous temple workers who lived in a culture that considered fertility to be a sign of God's favor. We can relate to their frustration, as they surely wondered why their prayers for a child went unanswered. I can imagine their despair when Elisabeth reached menopause. And then - finally - their son John was born, in another miracle that fulfilled a specific purpose at a specific time. I love hearing these reminders that children come when and how they are supposed to, regardless of the obstacles that would make it otherwise impossible. With God, nothing is impossible.

We are blessed and we are loved -- all of us are. We may have righteous desires that are unfulfilled, and our longing is evidence of our righteousness. But we can rejoice in the child who was born "unto us" more than two millennia ago. Because of him we have so much to be grateful for, and so much to look forward to. Today's pains will ultimately be swallowed up in mercy and joy as we come unto him. I know this to be true, and I am so thankful for that knowledge