Saturday, April 30, 2011

A New Plan and Spirulina Warning

I got my test results back from my repeat immune tests. My natural killer cells stayed the same (bad), but my TNF doubled from 20 to 40. Yikes!!!! I was worried that I was going to have to start taking another medication like humira or prednisone to calm down the inflammation.  I got on the internet. I thought about all the changes I made since the first test. Well in January when my FSH was higher than my age I panicked and started to drink wheat grass to try to lower it. I did not want to over do it or spend a lot of money so I found a drink at the grocery store that had wheat grass in it. I started drinking Green Machine by Naked and Superfood by Odwalla. I started to drink one or two a week. I thought I was being healthy and doing something right. It is a juice smoothie, not medicine so I thought it was safe. I never thought about how it would affect my immune system.

Well it turns out that both of these drinks contain spirulina. Spirulina is not regulated by the FDA becuase it is labeled as a dietary supplement. In general this stuff is supposed to be good for you. I did some research and it is horrible for those of us trying to conceive. It raises both TNF and NK. UGH so I freaked out. Thank God I had that test repeated or I would have never known. Now since my levels are both so high, I didn't really have a chance the past two months.

Yesterday I called the office of the reproductive immunologist. I was greeted with the please hold. Then I was on hold for 10 min. She tries to give me May 9th as my apt. I explain that I am starting a new cycle and I need to speak the the Dr asap. She comes back with May 5th. I told her that was unacceptable. She then says she will talk to the Dr and call me back. She never did. Ergh she is so annoying. This turned out to be a blessing in disguise. Thankfully I have the Dr's blackberry email....So I sent him a nice email at 5pm He called me immediately. He apologized and said she is not a nurse and does not understand. We had a nice chat. He had a new plan all set to go.

The first words out of his mouth were, I would like to put you on Neupogen to take care of your LUFS and immune issues.... This was music to my ears. So I never mentioned the spirulina to him.This is the reason I contacted him in the first place. In October, I found a research article on treating LUFS, the only one I ever found, from Japan. That Dr used neupogen to treat LUFS. My Dr is using it to treat immune issues. I have both, so this could be the magic potion. I was waiting patiently for this moment to come. I tried intralipids twice and I thought maybe he would want to try it three times. Neupogen is a daily injection which is not fun. Once you try PIO intramuscular, the subQ shots are a piece of cake. We are going natural this month.

I am so excited but scared at the same time. This is going to be the last treatment I try. I will  give it a few months and see how my numbers look.

Thursday, April 28, 2011

Two Out of Three Ain't Bad

This week is NIAW or National Infertility Awareness week. RESOLVE has done a nice job with this. They had a bust a myth blog challenge that I participated in. I was nervous at first, but then when I started to get some nice comments, I was very glad that I did it. It was nice to be a part of something.  I also created a sock swap for this week. I started this idea a few months back. It was nice to see my idea come to life. Being infertile makes you feel the constant sting of failure. So putting these two projects together and having success was wonderful. I got some nice responses  to both projects.

I spoke to my napro Dr yesterday. It was nice to speak with him since we are now on a two month rotation for cycle reviews. He said "two out of three aint bad" when referring to the fact that this month my LUFS messed with my cycle and I had  a delayed rupture. I had success the past two months So  I thought two in  a row was awesome. He said that he started reading Dr. Beer's book after I suggested it. I thought that was really cool that a Dr took my suggestion on a book and thought it was worth reading. Who knows how many women will be helped by this Dr becuase of my suggestion? I asked him if I should do another lap since it has been a year. He said that he would not do another lap until it has been two years. ugh, so while I am relieved bc I do not really want another surgery, I was hoping that getting my insides spruced up would help. He said that digging into your ovaries too many times will limit your reserve and could send you into early menopause. I trust him 100%. At the end he said something  about how I keep going. I think he was trying to compliment me, but it made me questions whether or not I should continue.  I can't imagine waiting another year. But, then I thought the same thing last year after I had my surgery. At what point do you give up? If I had nothing to fix I guess I could think about it. At this time, I still have my immune issues to work on.

Today was test day. I have no self control when it comes to home tests, so I POAS and got a BFN. Then I had to go get my blood test at the request of the Dr. My Beta was zero, so that is the end of this month. I am bummed but not upset. I think I am numb. Plus, I really had no expectation at all. My cycle was wacky with my poor CM. Then I had a large follicle that did not rupture, grew 10 more MM and then had a delayed rupture after I stated progesterone. My immunme tests came back and my levels are still high. But you know even when you think there is no chance, you get disappointed that a miracle did not happen.

I have to call the RI's office tomorrow. I dread dealing with the office staff...ughh, but then I will get to talk to the Dr and ask about my immune tests and make a  plan. A new plan always brings back the positive vibes.

Sunday, April 24, 2011

Bust an Infertility Myth Blog Challenge

 National Infertility Awareness Week® (NIAW):

Myth: IVF is the only treatment option for unexplained infertility.

How this has affected my life: 
IVF has become so  popular that it has become common to see it on the cover of magazines, discussed on talk shows, displayed on reality shows etc.  When I speak to others about my infertility struggles, they always ask me if I have done IVF. When I  tell them that I am not doing it,  they do not understand, becuase they know plenty of people who have done it. I feel like I am back in middle school with all the peer pressure to do something I do not want to do. This is the only treatment that gets lots of press, but it is not the only one. I was also affected by this because when I first had problems, I did not know the other options that were out there. My RE told me that I had unexplained infertility and IVF was my only option. I kept searching the internet and found other doctors. I now have been diagnosed with Endometriosis, LUFS, and elevated natural killer cells.
I created this blog post to educate others about their options.

Some Alternatives:

*Reproductive Endocrinologist.
Endocrinology is the study of hormones. A reproductive endocrinologist or RE, is an OB/GYN who completed a 3 year fellowship in the area of infertility.  Most people think that an RE only does IVF.  REs can  run diagnostic tests. They also prescribe medication to stimulate ovulation such as clomid, femara, or injectable medication. When you research what a RE does, it says the main function is to treat infertility by evaluation and treating hormonal dysfunctions, but it does not mention IVF.  

* NaPro Technology
This type of dr will run tests and diagnose your problem. Some of the tests are the same that an RE will run and some are different. This program addresses both hormones and internal physical structures. Surgery is an important part of the diagnostic process. Once the dr makes the diagnosis, he will create an individualized plan to treat it.  What makes this program special is that the goal is to fix the problem and not bypass it. NaPro trained surgeons are highly specialized in repairing reproductive organs. Examples of treatable conditions are endometriosis, PCOS, and Thyroid.
Napro Technology FAQ 

*Reproductive Immunologist
This type of dr will run blood tests to check your immune system. There is now a lot of research showing the link between the immune system and the reproductive system. Sometimes everything seems normal, but your immune system is out of balance.
Yahoo Reproductive Immunology Support Forum
More information

Monday, April 18, 2011

Update to LUFS Strikes Back

 First, I  want to thank all of the women who left comments on the last post. It is so hard deal with all of the ups and downs.  All of you out there who cheer me on, keep me going. I am so lucky to have support.

I went in today for another US. I dreaded going and seeing that follicle mock me. I cried in the car on the way there just thinking about how big it will be. In the past when I had a lufs cycle I never got another US a week later.

I got myself together and went in to my apt. I have been bold enough to request the nice nurse. Why not? I am tired of getting stuck with the mean one who judges me. So I started asking and they always say yes. The nice nurse came in. She was the one who scanned me on Thursday. So we spoke about what crazy thing will be in there today...Then she said with excitement. "It's gone!"

Yipee!!!! Woohoo!!! I was so happy. So it decided to pop after all. It took its sweet time. So now I have no idea when it popped. Sometime between Thursday and today. My chart is all wacky. I have been taking progesterone suppositories since Thursday night. So now I am concerned whether or not that medicine kills sperm. I never thought about it before, bc you take it 3 days after your peak day when you are in the clear.

Now this raises some questions about my timing. I had told My DH since Thurs to make sure we BD this weekend just in case. But, now I am not sure if the sperm even had a chance.....hmmmmm always adding new thoughts to this puzzle. I have to talk to my nurse to see if she still wants me to get the HPT in one week or wait, since it may not be a true two weeks after...... Even if the progesterone killed off any chance, I am still just so pleased that it popped. You don't know how hard it has been to continue month after month. I spent a whole year dealing with this, and I am finally making some progress..... YEAH back in the game....

So now I have another issue to discuss with my Dr. at the end of the cycle. If  I do not have a rupture, do I hold off of the progesterone and then get another US days later????

Saturday, April 16, 2011

LUFS Strikes Back

The last two months have been glorious. I was LUFS free. Here is a link to info on LUFS if you are not familiar. I had started seeing a new Dr, started some new supplements and magically it was gone. I thought I had finally moved passed this challenge. I had spent the whole past year trying to find a treatment.

So this month everything was going the same as the last two.On Monday I had some tests done. My follicle reached 27 mm, my LH was over 40 and my progesterone was 1. These were all indicators that I was actually surging on my own. I took the trigger anyway to get an extra boost. The next day I went in and my levels still looked great. My progesterone rose to 3. Then I went in on Thursday, 3 days past trigger, with confidence that I ruptured again. Well to my surprise my LUFS came back. The follicle had grown to 37mm with no sign of any fluid escaping. UGHHHHH The nurse doing my US was in shock. She could not believe it either.

 I was so upset. It felt like I got punched in the gut. Here I thought I had moved passed LUFS and was working to treat my immune issues. I wanted to scream, cry, give up. Then I started to think back about what I did differently this month. What did I do? What did I eat? I started to blame myself for not being strict enough. I had actually relaxed a little bc I thought the LUFS was gone. I had some cheese, chocolate, ice cream. I painted my nails, wore perfume. etc. I started to drive myself crazy. That is when I remembered the big change this month. I took femara for the first time. My follicle was much larger than it had been the past two months. I am hoping that it was the Femara bc I can stop that. I know in the past I read about clomid causing LUFS, but there is not too much out there on Femara.

I called the nurse to ask if I should take another trigger or continue to take my estrogen pills etc. She spoke to the Dr and called me back. She said sometimes the follicle opens up and the egg comes out but then the follicle seals back up, so she wants me to continue the estrogen just in case. I had spoken to the Dr about LUFS in January, I know that he does not really think it happens. She said sometimes, well for an entire year, I had the same issue so I know that it is LUFS and not what she said. There was no fluid released and the follicle was perfectly round and it grew 10mm since the trigger. I was really surprised that it grew so fast, that is about 3mm a day. I go back on Monday for p+7 estrogen and Progesterone. She wants me to add an US. So we will see if it got any bigger or not. The estrogen will also be another indicator of whether the follicle ruptured or not.

I guess I just have to ride this one out. I have about a week and a half  to go. I do not have hope for this cycle. Maybe a miracle will happen. I get to speak to the Dr myself at the end of the cycle. I will have to ask about the Femara. At this point, I do not think I will take it next month to test my theory and see if I have LUFS or not. My DH was really great and supportive. He kept telling me that at least I am still moving in a forward direction. I wanted to give up and he talked me out of it.

At least I have the sock swap to look forward to. Read about it here. Today is the last day to sign up. Then this weekend I will organize all the match ups and send out the letters. I am also participating so I am excited to get my pair. My vacation starts today. I get the next week off from school.

Monday, April 11, 2011

Update CD 11 April

I came back from my grandmother's party last night. Thankfully we did not have any car trouble or get into an accident. I get so worried when I travel far from home and into an urban area. I had a nice time. We got lost once and went into a pet store to get directions. It was called Safari Stan. The employees wore safari outfits. It was great. They had open pens full of rabbits. They had this beautiful rabbit that someone gave up. He was so tame. I started to pet him and wanted to take him home. I did not bc I lived too far.
My sister did not even show up so I was worried for nothing. My grandmother was so happy to see me. She lives 4 hours away and I had not seen her in two years. Man, time flies when you are consumed by Dr apts. It was nice to see my family. I also bought a new spring dress and got a lot of compliments on it. It made me feel so good. When you spend all of your money on IF while saving money for adoption, you do not get to splurge on luxuries that often. I saw a nice colorful spring dress, well actually four on sale and I had to have them. So I got all four and wore the most colorful one to the party. I also painted my nails. Woohoo. I can't remember the last time I did that. It was nice to have time to just play dress up and enjoy my dh. My grandmother turned 96. She is in good health. She still lives at home and sometimes takes the bus to Macy's. She has some back pain etc, but overall for her age she is doing well. I think she is getting lonely. She said she wanted her DH to come back for her birthday wish. It was sad to hear her speak about missing him. It made me appreciate my DH.
Back to TTC news:
CD 11: Today I had a faint +opk. So I knew I was getting close. I went in for US and BW. This was my first month taking femara so I did not know what to expect. The follicle was 27mm. Whoa. This was the largest pre-trigger follicle I had seen, so I am hoping that it is a very mature, happy, follicle. My lining was great. I was happy to hear that bc it was so early in my cycle. I went home and took my lupron trigger. My bloodwork was interesting. My estrogen was 383 which  makes sense with the size of the follicle. My LH was 41.52 OH YEAH BABY. This is great. I am very surprised bc the OPK was faint today. I usually do not get that high of a number on my own. So I am glad that I took my trigger when I got home bc I am surging..... My progesterone was 1.2 so I am getting ready to pop!!! I go back tomorrow for BW to see my LH/progesterone level. My CM has been not so great this month. I am not sure if it is a side effect of the medicine or just all the stress I was under due to visiting my family. Hopefully that does not mess things up. I am taking lots of mucinex today and trying to get lots of water. As a back up I have preseed.

I wore my pig socks today. Maybe I will upload a photo later. There is still time to sign up for the sock swap if you have not already. Here is a link to the information.     Here is a link to sign up

Saturday, April 9, 2011

Infertility Can Rip Families Apart

I usally try to make my posts light and positive. This time I have to let go and pour out my feelings. This is a long one, so go get a snack.  My next post will be about all the wonderful supports I have. So do not worry.
April is National Infertility Awareness month so I decided to post my story about how infertility destroyed the relationship I had with my sister.  I am hoping that by sharing this story, others who have similair situation know they are not alone.  I have come to realize that since she got pregnant right away without even really trying, she was able to only experience all the glory that comes with it. She has no understanding of the hell that many of us go through. Here is a link to an article about how infertility affects the whole family.

She never had to experience the  dark side of TTC: disappointment, despair, isolation, sadness, fear, mourning, stress, physical pain of treatments, raging hormones from treatments, depression, stress on my marriage, judgment by others, anger, 5 surgeries, time off from work for Dr apts, all the money I spend on treatments while I am saving to adopt, pushing yourself every day to keep going. .

My DH said that those who are able to do something with ease, really do not understand that some of us cannot. They think that the solution is obvious like, Just relax, do it more often, why don't you just adopt? etc.

I have not seen my father's side since her  baby shower. I am going down this weekend for my Grandmother's 96th birthday party, so all these feeling resurfaced. I do not  know what they even know about the situation. I do not know if my sister will even be there.

 I started TTC four years ago. I had been trying when the OBGYN found a large fibroid and said it had to come out. I had to wait four long months until I could have surgery. In January 2008 I had a laparotomy which is a major surgery similar to a c-section and not the same as a laparoscopy. My sister came to visit me for a few days and help me around the house. We spoke about children. She mentioned her DH needing to get a second job and that times were tough etc. Then she said something and slipped bc I caught the fact that she went off the pill. She down played it and said they weren't  trying yet, but she wanted to get her body ready. So I thought I had some time before she would start trying.

Then 3 months later I get a call from her. She says "we're pregnant and we're going to announce it to the whole family at Easter". I was shocked bc I did not know she was trying. Here I am at the one year IF mark and she calls me and just throws a granade at me. I started to freak out and imagine what it would be like when she makes her announcement, and then everyone turns to her older sister and says when are you having one etc.

I did not know what to say or how to feel. I just said "that's nice." She got really mad at me. She said "well shouldn't you be glad that I am not having the same problem you are?" She says "I thought you had to be off the pill for 3 months" (UGH BURN Really?) Again I was shocked. She never said anything sympathetic to my condition. It was all about her. I hung up on her because I started to cry. I called my mom to console me. I just cried and cried. I did not know what to think. I was just ambushed by emotions and feelings of betrayal by my sister. It was not the fact that she was pregnant, it was the lack of sympathy for my situation. I did the math and realized that she was already pregnant when she was at my house
When she found out that I called our mom, she got even more angry because I "ruined her surprise." Really? I cannot have what she is going to have in 9 months and she gets mad that I told our mom first. She could not see what  a gift she had. She only wanted to be up on stage and have everyone cheer for her. I was disgusted at that point. We got into a huge fight and stopped speaking for months. I even went online and found some great articles from the RESOLVE website to send her about how family and friends should handle those who are IF, basically explaining what we go through. She got mad that I sent it to her. This is a link to something similar

My mom would give me updates. When I found out she was having a boy, I started to crochet him a blanket. The summer came and it was time for her baby shower, I decided to suck it up and go. If you are suffering from infertility, you know how hard it is to even go to a baby shower  in the first place. So you know how hard it was for me to go to hers when I was so hurt by her. I said to myself, there are some things you cannot take back. I did not want to miss my sister's shower. Not only did I go, but I made it a point to get involved and run the games etc. I was up front and sincerely supportive.

In October, when the baby came, she called me and we talked. Everything seemed fine. I now had enough time to digest my feelings and deal with the whole thing. She lives 4 hours away. We spoke about me going out to visit. I could not go right away bc I was sick. When I was better I asked to visit, but her friend was coming that weekend, so we made the date. I do not drive alone long distances alone. I always take the train. The schedule online said the train was running an hour late, when I got to the station, I had missed it bc it had miracoulsy made up time. I called my sister at the station to explain.

She got really mad and said "can you come tomorrow?". I said, no I do not drive alone that far. I will come next weekend. She gets all panicky and says no. I ask why and she says she is going down to visit our mother. WOAH, really? A secret visit, bc I had no idea she was going down. Then I said, why are you going down the week before Thanksgiving. At this point, she throws me another grenade. She replies I am  not going down for Thanksgiving this year. (We always alternate holidays so we go down for Thanksgivng one year and the next Christmas but we go on the same schedule) so at this point I start to see what is going on. I said well then we won't get to see each other for both holidays this year. She said she needs to do what is best for her and her child. (I might have been able to switch if she had spoken to me earlier and given me time to plan with my DH etc, but she kept this all a secret)  I cannot believe what she is doing. What is her problem?

So we get into another fight. I send her a Christmas card and some presents. I figured that even though I was hurt, I wanted to send the message of peace. I spoke to my mother around Jan or Feb and tell her that I never even got a thank you card. I was not even sure that she got the presents. My mom starts to sound weird and named the toy I sent. So I realized that she went to visit the baby again. I asked why she went so soon after Christmas and she reluctantly tells me that she went to the baptism. WHAT???? REALLY? so she baptized the baby and never invited me. Then I find out that she asked her pregnant friend to be the Godmother. This is now just about two years of IF for me. She could have decided to make me some sort of mother and share her child. She chose to be cruel and chose her pregnant friend.

At this point I was wounded beyond repair. When she got pregnant, that was hard for me to deal with at first, but I always knew that she had a right to have a baby and be happy and it was not anything she was doing against me even if she was insensitive. This time, she did something on purpose to hurt me. You cannot take this back. You cannot undo the fact that she made the conscience decision to hurt me. She also made it clear that she does not want me to be involved in his life. (I can't remember when, but at some point she sent me a not stating that this would never be resovled and she wants me to stop sending him Christmas presents.)

The next year was really awkward. If we saw each other at family events, we stayed away from each other. We never spoke etc. Finally in November of 2009 my Grandmother died. I thought that maybe at the funeral she would realize that life is short and have some compassion towards me, but nothing. Then two months later in January, my mother had a stroke. I went down to visit. I thought again that my sister would realize how she is behaving is wrong. I put out the olive branch and I spoke to her son. I played with him etc. I even posed for  a picture with him. I made a huge effort to show that  I was willing to move on. She never spoke to me.

Then while my mother, my sister and I were in the living room. Something came up from when my sister was in HS. Then she made some nasty remark to me. This was the first time she spoke to me in a long time and that is what she chose to say. I got up packed my bags and went to the train station. My train was not due to leave for hours. I did not care. I sat in the station crying. I could not believe how heartless she was. Two months later, I had another laparotomy. This was a four hour  major surgery.  I was in the hospital for a few days. I was out of work for 4 weeks. My father told me that he called her to tell her and she did not care.

At this point, I am not sure if this will ever be resolved between us. My mother keeps telling me that when I get pregnant this will go away. That offends me bc it makes it seem like it is okay for my sister to act the way she does and that it is all my fault for being IF. 

I work in a school and someone has been pregnant every year since I started working there. My co-workers who aware of my IF, will come  to me and say a variation of the following, "I know what you have been going through, I am sorry about it. I have to tell you something and I don't want to hurt you" It is amazing that they get it and my sister cannot.

Tuesday, April 5, 2011

April CD5 update

Here is a nice photo of my crocuses. They are the first to bloom. They open and close throughout the day and stay closed when it rains. It was nice to be able to catch them fully open in the sun over the weekend. I love flowers. I love taking photos of them too. My tulips have sprouted above the ground, but they have a long way to go before blooming.

The start of a new cycle always brings hope. Here we go again.
CD1: started antibiotics/probiotics
CD3: started Femara. I will take two pills at night for 5 nights.
CD4: I went in for baseline testing. My numbers were okay with no surprises. I was happy to see my FSH was only 10. Now I know that 10 is the high side of normal, but after I saw 37 once, I am glad to see ten. My US showed a small follicle on the left. I love my left so I hope the left leads again this month.  I will go back for monitoring in 5 days to check my follicle.
CD 5: Pill count for today 7 plus multivitamin and  fish oil. The nurse came to my house to draw lots of blood for my repeat immune testing. Thankfully my blood flows fast. The nurse from the Dr's office emails me to tell me that I will also now have to take Estrace in addition to my progesterone post peak because the lupron trigger destroys the corpus luteum which supplies estrogen and progesterone. Hmm that is interesting that they never mentioned that when I took the trigger before. My p+7 estrogen levels have been low in the past 5 months 25-79, so maybe this will help. I just do not need one more pill to keep track of.