8 weeks 3 days

This past week has been a rollercoaster again. It started last wednesday the 21st. I woke up in the middle of the night to use the bathroom and there was bright red blood on my pad. And (sorry tmi) but blood dripping from me into the toilet. Yep, here we go again, I thought. I had no cramps but it was a decent amount of blood. I tried to ease my fears as best as I could at 3am. But clearly got no sleep.

  That morning I contacted my doctors who told me to just wait it out and see if it got worse or not. Nice. I have to sit there and wonder if things are ok or not all day. On top of that, they told me not to come in because they didn't want to do another ultrasound so soon since I had one the week prior and if I were miscarrying, there was nothing they could really do. So by around 3pm - the bleeding wasn't necessarily worse - but it wasn't stopping. And I was starting to cramp a little. I was to start my progesterone in oil treatment that evening and I thought to myself - if things are going south - I am not going to put myself through a hell week of torture doing these shots in my ass for nothing. I wanted to make sure everything was ok with the baby before subjecting myself to that. So I decided to head to the ER.

  Everything went really smoothly there, I was in and out within a couple of hours. Got an ultrasound and baby was ok - no bleeding in the uterus or ovaries. The heartbeat was 152 and measured right on time. What a relief. They did see "endocervical fluid" which clearly was blood in my cervix. Not a lot they said, just a little. So clearly the issue is my cervix. It's angry for some reason!! Probably all of these suppositories, ultrasounds, etc..etc. It's like "leave me alone!!" lol

  I went home that afternoon feeling more at ease that at least for now - everything was still ok. That evening I did my first progesterone in oil shot and let me just say OUCH. I hate them. My husband has to inject them in my ass every night. NOT. FUN. Painful and brutal...but hoped they would at least give my cervix a break.

  Well, or so I thought. That saturday (christmas eve) I woke up to yet again. Red blood. Are you kidding me??? Again, I tried not to panic but this is getting to be a little much. Red bleeding every 3 or 4 days can't be good. I didn't call the doctor this time. I didn't go to the ER. I just rode it out this time. And by the end of the day it had stopped. I have no idea what to think at that point. There is really nothing anyone can do. If it's going to happen, it's going to happen. I just had to wait and see. Which is the absolute worst. But eventually, it stopped, and I just brown spotted for the remaining few days after.

  So today I had ANOTHER ultrasound. Which I was very reluctant to do since I feel I have been having weekly ultrasounds since week 5 at this point. I hear there are risks with constant ultrasounds so it makes me nervous. But it's not like I am just doing them for shits and giggles. I have had medical emergencies and needed to be seen. Anyway...today I went ahead and kept my appt because after Saturdays bleed, I wanted to make sure everything was still ok and also - I am about to drop another $500 on intralipids, so I needed to be sure everything was ok and not just throw my money away for nothing. I told the tech I only wanted an abdomen ultrasound and not transvaginal. I told her my vagina is closed for business. hahhaa. I need everything to just heal and be normal down there...no more disrupting the PH levels. No more prodding a clearly sensitive cervix.

 She honored my wishes and we proceeded with the abdominal ultrasound even though she insisted she could give me more answers with transvaginal. I told her I just wanted to be sure the heart was still beating and that's all I needed to know at that point. So we started and sure enough, the little bean was still with us, beating away at 184bpm. Measured perfectly to date as well. I asked her if it was normal for the heartbeat to fluctuate so much and she told me yes they go up and down all the time. Just so long as it's in range then its fine. So now I will go ahead and make an appt with my OBGYN to get more prenatal care too and schedule hopefully my final intralipid transfusion.

  So that's the latest. Like I said, been a rollercoaster of emotions. This hasn't been an easy journey so far. I also threw up for the first time this morning! I have felt plenty of nausea this trimester, but this time I actually barfed. Guess that's a good sign too! We are still far far far from getting out of the woods though. We still have that one day at a time mentality. Anything can change at any given moment and that keeps us humble and grounded. But we are still on base...and for that, I am grateful.

7 weeks and some days

Someone sucked all of my energy out of my body. I literally am too tired to function. When I am at work..I think about sleeping. And when I am home...I am sleeping. Man! I feel so useless lately, but I know my body is working in overdrive, so I just have to accept it and relax. My husband is a godsend. He has picked up my slack so much with no complaints. I can't express how lucky I am to have someone like him supporting me through this. I mean, he cleans, makes me dinner, brings me snacks, etc..etc. Truly amazing. 

  Saturday (the 17th) I had another small bleed. It wasn't much and didn't last long. But still scary nonetheless. However, this time I didn't freak out. I knew it had to be the progesterone pills and my irritated cervix. So I kept calm and just went to bed. Next day it was gone. I have lowered my progesterone from 200mg 3x a day (600mg) to 200 2x a day (400mg). I am hoping on a lower dosage it will give my cervix a little break in between medications. From what I read, most women who get put on progesterone supplements only get put on from 200mg to 400mg anyway - so I don't feel that it's going to be a big deal. I also read there is a lot of controversy to progesterone supplementation in general. Some don't believe it prevents anything and actually can cause harm to the baby. I don't know. I do know I will just take it because I am doing what I am told. But hopefully a slightly lower dosage will calm my cervix down a bit. We shall see. I haven't bled since that night, but still have light brown spotting here and there. I just really am doing all I can to not take those damn shots. I don't feel comfortable with them at all. So I am praying my cervix will stop being a pansy and suck it up! lol

 Other than that...just cruising along. My 8 week appt is Dec 28th. My doctor will be out on vacation so a new doctor will be performing the ultrasound. I hope she is a lot warmer than my current doctor. I swear, my doctor has the worst bedside manner. She is just so direct, to the point and not warm about anything. My husband was even bothered by her lack of excitement when we saw the heartbeat. You'd think we have been on this journey with her for 2 years now, and we've come so far, that she would show a little bit of emotion. We got nuthin. Haha! Oh well. It is what it is. Hopefully I can move along with all of this and go see my regular OBGYN soon and deal with my specialist less. Not sure how all of that works yet. 

 Anywayy, if I don't chime in before Christmas, hope everyone has a lovely holiday!! 

xo

Rocky Week!!!

Well I just went through one hellish week! It all started on Tuesday when I went to the bathroom to put in my afternoon does of progesterone. When I pulled my pants down I noticed I had red blood all over my pad! Yes, bright red blood. I thought - game over. Instantly I panicked and since I was at work, gathered my things and headed straight to the ER. I tried to remain calm, but I just knew this wasn't good. Not that the ER could really do anything for me at that point - but I just needed to know the status of the baby. Was it still there, at this point they could see if it had a heartbeat or not. That would at least tell me all I needed to know.

  So I arrived and in no time, was in a room. They took my vitals/blood and set me up for an ultrasound. There I saw the most beautiful thing I ever could see. My baby. With a heartbeat of 124!!!

I couldn't believe my eyes! I was expecting to see nothing - and there it is!! There was no signs of bleeding in my uterus or anywhere else for that matter. Everything looked great! I was so relieved but knew I am far from out of the woods. But we were still on base as my husband put it!! Baby measured 6 weeks 5days! Right on point!

 So after I left the ER I went home and took a few days off of work. I needed serious bedrest and just time to chill. My boss is pretty spectacular and very understanding of my situation, so he gave me no issues. I spoke with my REI and she believes that the progesterone suppositories are irritating my cervix which caused the bleeding. The bleeding only lasted a few hours and then stopped. But I am still brown spotting so we need to do something about these suppositories. 

  Thursday (yesterday) we had a follow-up appt with my REI. My husband got to come this time so he could see/hear the heartbeat. We went in and there it was! Beating ever so fast at 167! In two days it went from 124 to 167! I kind of got worried like, is that normal for it to increase that fast?? But the doc told me that it's a good, strong heartbeat. So I will take it! haha! 

  Afterwards we discussed the progesterone dilemma. She suggested I could take progesterone shots, which are insanely painful but obviously wouldn't cause me cervical irritation. I agreed to that and we went and picked them up. When I got home I did some research on the shots and found out they aren't as great as they sound. Which clearly, they sound terrible - so imagine my surprise when I read that the side effects can be far worse than anything I was experiencing. It goes directly into your muscle, causes lumps, bruises, and can lead to bloodclotting, and more severe issues - even miscarriages. Um. NO THANKS. I will take my chances on the suppositories. So now I am finding a pharmacy that carries the older ones I was using that didn't mess me up the way these newer ones do. Hopefully it will help and I won't have to resort to these shots. We will see!

   Last night I had my very first dry heave attack. I was eating cereal and I suddenly felt the urge to throw up! I ran to the bathroom but nothing came out, thank god. But the nausea is definitely kicking in! I just hope things continue progressing as they are. I don't think I can take any more heartache. Especially having come so far now with things looking so positive. I am just sort of shutting my eyes and scared to open them because it doesn't seem real. But we take things day by day, as I've constantly been saying. One foot in front of the other. Tomorrow is a different day, but today, things are still ok. And that's what I will simply focus on! Keep your prayers going! Need every single bit!!

xo

Nausea, progesterone and brown stuff

I have entered the 6 week mark of pregnancy. A milestone in my book since this is the furthest I've made it along in a very long time. Things are going pretty good still. I am insanely tired and I have started a few waves of nausea bouts. Haven't thrown up or anything like that...but definitely feeling a little woozy. I hope that's a good sign.

  I have these progesterone pills that I take that are orange. I hate them. The discharge makes it look like I am spotting and I also have dark/blackish discharge mixed in with the orangish discharge. Gross I know! I did some research and they say that this can be completely normal on progesterone suppositories. It can either be old residue from the progesterone pills that turn dark, or it could be old blood from them irritating your cervix/vaginal walls which these pills tend to do. It's not a lot, and it's more so just annoying to see then anything too alarming. But they say as long as I am not cramping/bleeding then it should be normal. Still...after going through 5 miscarriages...anything will raise my eyebrows and I dread going to the bathroom.

  I also had another round of intralipids last night. Which will make my 3rd now. Hopefully they will do their job and start decreasing my NKcell numbers. I will go for a followup NKcell assay panel next week to see what they are looking like. God I hope everything is finally coming down after all the crap I'm on! It would be insane if my body is still going to hulk through these immune suppressants.

 Well that's all for now! Nothing too exciting and hopefully it stays that way! :)

 

5 Weeks 5 days

So today I had my first ultrasound. I was sooo nervous obviously going in but things went really well! I saw the gestational sac and the egg yolk! I am also measuring 5 weeks, 5 days which is 2 more days than what I was thinking I was (5 weeks 3 days).  Here is a pic of the sonogram:

One thing she did notice is that she didn't find my corpus luteum cyst on either ovary - which means it's a damn good thing I am on progesterone supplements because I would be seriously lacking. I don't know why I didn't produce one - not sure if being on the progesterone after ovulation forced my body to not make one or not. Who knows. I just hope the supplements do their job with no issues. I am on 600mg a day so my doctor thinks that is enough to get me through until hopefully the placenta takes over.

  I have the 6 week appt next thursday (the 15th) and hopefully things will have progressed enough to where we can see a God willing healthy heartbeat. I am cautiously optimistic and still realize anything can change at any moment...so I am sitting here happy, yet grounded. I just pray things continue going the way they are...*happy thoughts....happy thoughts*

Beta #5

Well I can go into this weekend with a big sigh of relief! Just got the betas back and my numbers jumped from 1497 to 3,576!! They are rising beautifully!! I just pray that this is our rainbow!! I know I keep saying each day is different...one day could change from the next. But today is wonderful news, and I am holding on to this feeling all day!!!

December 4th is my birthday and I certainly know what I will be wishing for when blowing out the candles! Tomorrow marks the 5wk mark also!! It will be a pretty nice weekend if we all make it through!! haha! Next up, Ultrasound on Tues to hopefully see a nice healthy sac! :)

Have a great weekend everyone!!

Of all things

Last night I woke up with the wooorrsttt toothache! My bottom wisdom tooth is impacted - it never came out fully. So every now and then food will get stuck in there and create an infection. Well man oh man did it ever hit. It felt like I got socked in the face with a bat! I fortunately got in with my dentist early this am and he cleaned it all out and shaved a part of my top wisdom tooth down because when I closed my mouth it would jab the lower gum. Ouch! I have to get some antibiotics and just hopefully it will start to heal soon. Last thing I need to be dealing with!

So I am 4 weeks 5 days today. The doomsday. I hope I can make it to my 1st ultrasound on Tuesday. This weekend will be interesting for sure since I never really pass the 5 week mark. Except for once.
One day at a time here. Tomorrow is my 5th beta test. Praying for high numbers!

Betas

Just received my 4th beta results and it's increased from 808 to 1497! Great news most definitely! I am still on pins and needles and taking it one day at a time. I have an ultrasound scheduled for the 6th as well. They want me to do ANOTHER beta test on Friday which I feel is just a bit ridiculous! These places I feel like to milk that insurance $$ whenever possible. On top of that - they stress me the f$%k out!!! I don't need that stress anymore if my numbers are going up or down! It's excruciating to sit and wait for the results all day not knowing if this is going to progress or not! Pure torture! I hate that I have to go in AGAIN...but what can I do. Ugh.

Anyway, good news still! Keep those prayers up!! Grow baby grow!

Updates!

I have some good updates and some not so good updates. First off, with the good! I went in for my third beta today and it is at 808!! That is excellent and they are rising perfectly! ALSO - the brown spotting has stopped since last friday! My doctor thinks perhaps it was implantation bleeding or progesterone. So alllll is good so far! I am 4 weeks and 2 days today - so this week is insanely crucial as I have never passed the 5 week mark except once.

  The bad...I got my follow up NK results and looks like my levels are still elevated. My doctor really wants me to do IVIg but I just cannot afford that! I have also done a lot of research as of late regarding NK cells/high tnf and I have learned that NK cells need to be determined through uterine scraping/ not by bloodwork. Because everyone has NK cells in their blood - it's normal! Anyway - without getting into too much depth with it all - I am not really convinced that the NK assay tests I've been doing are proving much. I tweeted to Dr. Braverman on twitter - and he actually responded to me. He stated if the levels are not done by serum - they are worthless. He said intracellular tests show and prove nothing. So I am at a loss. But after researching other women in the same boat as I am - they seem to get along fine with just a higher dose of prednisone. So I asked my doctor to up the dosage to 40mg a day. Which she agreed.

  So I will take 40mg a day to hopefully keep things suppressed enough to not interfere with anything. And by the grace of God - it will work. I am no doctor - and I could be taking a huge risk with all of this by "self diagnosing and self treating" myself through my own private research. But I just am not comfortable doing a blood transfusion treatment that costs a ridiculous amount of money and isn't guaranteed 100% to even work!! Maybe I am wrong - and if all goes wrong - I will give it a go next time. But I am praying in my gut that I am making the right choice by sticking with the treatment plan I am currently on - and by upping the steroid dosage. I guess we will see.

But enough of all that....I am taking this one day at a time. And today, things are POSITIVE. 808!!! Grow baby grow!!!!!

Brown Spotting

Well, today I woke up with brown discharge, which is the way all of my miscarriages always start out. So needless to say, I'm preparing for my 6th loss. I really have nothing really to say, other than I am obviously disheartened and gutted that I have to face this yet again - as well as knowing that none of the things I have done to prevent this has worked. I know it ain't over til it's over...but I'm bracing for impact. Whats worse is I purchased another round of intralipids which I was supposed to have tomorrow - so there is $450 down the drain. FML.

Anyway, will keep you updated as the days progress.

Happy Thanksgiving. :(

Doubling

Just got The results from my second beta and it's doubled from 19.5 to 57! I just scheduled my second round of intralipids for friday! Still a long way to go but I will take any positives that will come my way so regardless of what tomorrow will bring - today is a good day. :)

Betas

My beta is at 19.5 as of yesterday. Definitely pregnant. Now I go in tomorrow to see if it's doubling. That's the important factor. Last time I did this it started at 23 and only went to 24 after two days. So naturally, I am nervous.

 I have a certain peace about it in a way though. I guess it comes after going through this for so many times. The peace is, I have no control over what will happen. It will either be or it won't be. It's out of my hands at this point. I have done so much already to try and change the outcome and if it still doesn't work out - then I won't give up, but I will leave it knowing I am doing everything in my power to make it work. It's all I can do, so I am ok with that.

  I will update tomorrow when I get my beta results. :)

Round 6!

So this happened over the weekend! 

Top is 8dpo and bottom is 9dpo. 

I am almost certain my days past ovulation is accurate because of my temp spike and positive opk before it spiked - but a line like this, this early? Well I am hoping that is a really good sign! I was feeling quite dizzy over the weekend and thought maybe I was having a reaction to the steroids since I up the dosage - but then I remembered the one that stuck the longest (8wks) I got a positive around 8dpo and felt dizzy too, so I went ahead and tested. I am glad I did - because the sooner I know the better. 

  I am now waiting for my doctors office to open so I can hopefully run over there to confirm it all with a blood test - then set up an intralipid session perhaps tomorrow. I am so torn between the ivig and intralipids...I don't know what to do - but I am leaning towards intralipids more. I don't know if it's the right choice - but I guess it's just a wait and see thing. If it doesn't work out - next time I am going to go in guns blazing. Ivig, humira, the whole shabang. I wish I kinda did that this time around - because the thought of losing another right now is gut wrenching. I really thought the hydroxychloroquine would have brought everything where it needed to be by now - but that doesn't seem to be the case. I am going to speak to my other doctor about perhaps uping the dosage on that too if this doesn't work out.

  I hate saying "if this doesn't work out" but it's a sad potential reality I have to face. I have been through this song and dance 5 times now, and as I am optimistic that the things I have done will hopefully make some sort of difference this time - I have to brace myself as well. I am not telling anyone but my husband and my sister. None of my close family members or friends reads this anyway (except virtual friends I made on forums and perhaps Tamera, hi Tamera! shhhhhh!!!) haha! So I don't have to really worry about writing here and word getting out. 

But for now and with that said - today I am pregnant! God bless this little bean, for however long it may be. <3

6 DPO

So I didn't take any progesterone medication this cycle as of yet, because I wanted to see what my natural progesterone levels were like - and they look good. At 6dpo it's at 12.6! My doctor says she likes anything above 7 - but anything over 10 confirms ovulation! So I definitely ovulated this month! I also tried to time things perfectly, so I am hoping that things will be ok this cycle and I will have some news in the next coming days when I start testing again. I am going to put myself on the progesterone tonight - even though my levels are decent. But I am going to lower the dosage to 400mg instead of 600mg. That way it's there - just not overdone.

 I bumped my prednisone to 25mg a day, still on hydroxychloroquine, and will schedule another round of Intralipids pending a positive pregnancy test. I contemplated on doing the IVIg this cycle - but after some research, I've decided that I am going to stick with the protocol I am on and hope it will be enough to suppress things accordingly. If shit goes south and I miscarry again...next month I will do the IVIg. I will be broke when all is said and done - but it will be the last thing I haven't tried. I am hoping it won't come to that - but after the hell I've been through...I'm bracing for the worst. I don't like to be that way...and don't get me wrong - I am hopeful...but prepared. It's all you can do in a situation like this. 

 Anyway, stay tuned for upcoming status posts as I walk on through this two week wait. :)

Results.

****Update: I spoke with my dr. and she is going to up the ante to 20mg of prednisone daily. So that should hopefully help with the inflammation. She also again advised I do the IVIg treatment pending a positive preg test. I am considering it. I just don't want to fuck around this time. I am tired of going through this crap month after month. So I may just suck it up, go into debt and see if it makes a difference or not. We will see****



Well, not the news I was hoping to hear. Got my TNF results in and my levels are still up.

TNF: 37.0
IFN: 23.4

My IFN level is up too, so I don't know what that means. Guess more inflammation for me, yay.

This is why I didn't want to retest, because these levels stress me out. I wrote my doctor letting her know the results (I called the lab this morning to see if they were in). I know she probably is so irritated with me that I do my own work when it comes to this. But honestly, she should be happy - I'm essentially doing her job! lol. I do all of the research/work and she just authorizes the medication. If I sat and waited around for them to contact me with the results - I would be waiting until next week. My old nurse sarah would be kind enough to email me the results once they came in...but she no longer works in that office. Now I have a bitch nurse I have to deal with that won't do those things. I have to come into the office and meet with the dr. to discuss things I already know - on top of paying a $40 co pay. It's bullshit and I am really getting fed up with this office.

Anyway, hopefully my doctor will respond and give me a higher dosage of prenisone. Hopefully that will help with the inflammation issues I clearly have. I am really bummed that I have been on the hydroxychloroquine for 3 months now and it hasn't lowered my TNF yet. I was really hoping that this drug would be my cure for that - and to spare me more aggressive treatment such as humira (which I am not thrilled about taking since it can open the door for cancers and such) as well as the super expensive IVIg treatment. But now I'm thinking I might not be able to get off the hook with that.

  Anyway...I should be ovulating tonight. I got my round of Intralipids yesterday and I think I timed it perfectly this time around. We have been DTD all week and will go again tonight on onward until I am sure I ovulated. No messing around this cycle.

If I do happen to get pregnant and still miscarry - it's off to see Dr. Braverman, Reproductive Immunologist in NY. He is the top Immunologist in the country and many people across the world go to him. NY isn't too far away and it will be worth it to work with someone who claims to have an 80% success rate. I am eager to get this sorted and after a year of trying with my doctor - shit just isn't working with her. Well - maybe it will - it's to be determined how this month goes still. But if not...buh bye to her and that practice.

Anyway - tick tock goes the clock....hopefully this month will be our month and will be the start of a new beginning for us. I am going to keep positive despite the bad news of the levels today. Stress doesn't help matters...so I am going to try my best to not stress out. Easier said than done...

It's that time of month again

So I have had so many thoughts and feelings these past couple of weeks and I am not sure about anything anymore. What I do know is, I am about to ovulate any day now. What I am not sure about is all of the steps I'm taking to ensure this one sticks. And I simply just don't like my REI doctor anymore. It sucks because there are very few immunology doctors in my area. And I feel like if I find a new doctor at this stage - I'm essentially starting over. Back to square 1. And I just don't know if I have the head for that. BUT. If I do miscarry again - I am finding a new doctor. Period.

 So here are my concerns.

1. Prednisone. I have read from many other women on my immunes forum that their doctors start them on at least 20mg of Prednisone from the day after ovulation until you get a positive pregnancy test. The reason they start the day after ovulation, is that there is a possibility that the steroid can interfere with ovulation. I started prednisone on cycle day 7 as my doctors instructions and these past two months have failed to conceive. I'm not entirely blaming the prednisone - I'm simply saying it hasn't happened while ON the prednisone. So who knows. I am going to go ahead and start AFTER ovulation, and hopefully I can ovulate naturally without any interruptions. I also questioned her today on being on such a low dose when others start on higher dosages. She stated that it all depends on my TNF levels and if they came down or not. Never once did she insist I have them retested to ensure my dosage of prednisone would be enough to be effective or not. So I am thinking the dosage would be - and now it may be too low to even matter. Very annoying. So now I am going in tomorrow to get my TNF level retested - and since it will be on a tuesday - my results probably won't be in til next week. I ovulate this week and need to start prenisone asap after ovulation. So who knows if the dosage is going to be enough - and I won't know that until I get those results. It's pretty shitty that I have to do all of this research, then approach my findings to my doctor for her to say "oh yeah, you need those levels retested before we can determine dosage"...she just automatically gave me a dose and didn't question further if it was even going to be enough!!! Highly irritated about that.

2. Progesterone. These past two months, I have passed a very large clot of tissue when I got my period. This never happened before and the only time I've passed tissue like that, is when I miscarried. I know for certain I wasn't pregnant - and still passed this tissue. So I looked it up and turns out if your lining is too thick, and can cause you to shed your lining at once. It's called a "decidual cast" and it basically comes out like the lining of your uterus. Pretty effing gross. This can happen with miscarriage, but can also happen with hormones. I never felt I had a progesterone issue. My periods were always like clockwork 28 days, 5 days of bleeding, ovulation normally at 14 days. Textbook cycles. Also whenever I would have scans - my lining would always be nice and thick...perfect. But my doctor wanted to put me on 600mg of progesterone after ovulation as a "just in case". Since then, every month these past two months I have passed these enormous clots of tissue. It also makes me wonder if that is why I haven't conceived as well. If the lining is way too thick - the baby can't implant. So that is just another thing I am changing this cycle. I am not starting progesterone after ovulation. I have decided I will go in on a day 7 past ovulation scan to check the lining of my uterus to make sure it is at the thickness it needs to be at and that my levels are good. If they aren't - I will then take the progesterone. But I am definitely skipping it this time around and going natural.

3. Intralipids. Last month I decided I wasn't going to do this until a positive test. Well I changed my mind and I am giving it one more go this month. I should ovulate during this week and not on a weekend so it should be easier to time a nurse accordingly. I just don't want to have any regrets on that if I do end up pregnant this month - I want to be sure I did the intralipids because they are important in this mess.

  So there you have it. I am not sure if taking matters into my own hands is a smart idea or not. I don't even know if all of this - whether I follow my doctors protocol or my own will make a difference regardless. I honestly feel I am still not being aggressive enough deep down. I feel that the things I am doing are just not going to cut it. But we will see. I have done so much research on this stuff just so I can get a better understanding with what is going on with me. I found about hydroxychloroquine which I have been on for 3 months. My doctor didn't want to prescribe that to me. I had to do it on my own and find a doctor who would listen. So I feel, when it comes to your health and your body, sometimes you have to take matters into your own hands. I am just another patient. I am nobody special to her. I am a dime a dozen in her waiting room. She doesn't truly care about my well being. I'm not saying she doesn't care - Im saying she doesn't care to the extent that I care. So that is why I need to follow my gut and do what I feel is right. Hell, I've done so much research sometimes I feel like I could be the damn doctor!

  Anyway, If I do miscarry again. I am dropping my doctor - and going a very hardcore route. I will make an appt with the top reproductive immunologist in the country - Dr. Braverman. And I will see what he can do for us. He states that 80% of his patients leave with a baby. He will be my last hope here. He is very expensive...but if I can just get and stay pregnant - it will all be worth it.

New Month

Started my period today. Gonna brush off last month and start this one with a positive outlook. November marks the 2 year anniversary of this very long journey of ours. 2 years in a row - I have successfully conceived in November (even though they didn't stick around). So hopefully I can shoot for 3 and it will actually stick around this time! :)

                                    Crazy it's been 2 years now. What a crazy ride it's been.

Sadness

Well, another month gone, and still nothing. I am just still waiting for my period to start and the wait is absolutely brutal. Because it plays tricks on your mind. You think - well there could still be a small chance I am...but as the days progress, and the negative tests still come, hope just fades away.

  Being in this situation is hard. It's hard to constantly swallow this pill month after month - as you watch others lives progress in ways you thought yours would. A new birth announcement, "it's a girl/boy" posts, "I'm pregnant" posts...baby bump posts. Kids halloween costume posts. My daughter said the cutest thing posts. "I took my kids to the pumpkin patch" posts. Everything stings. It all weighs heavily on me. And that sucks, because nobody is doing anything wrong. This is my own personal hell.

  Putting on a brave face day in and day out. Trying to be strong and happy, meanwhile I am slowly crumbling inside. I know I am in a funk right now, simply because another month is over and I have nothing to show for it. So this is me just being emotional over it all. But the simple fact of the matter is, I am sad. And I am just tired. I wish I could finally wake from this never ending nightmare. All I wanted was to start a family. Why is it so easy for some, yet impossible for others? I'll never make sense of this.

Negatives..

I began testing on tuesday and so far nadda. Since I don't know when I ovulated, I am assuming I could be anywhere from 9dpo to 12 dpo. I was hoping to be 12 dpo because that would have put me right at the best time - since that would be the day after I had my intralipids. But that said, if I am 12 dpo - and still pulling negatives - that doesn't look promising for this month. If I ovulated later and only 9dpo....which would be realistic since I had a late period last month as well as getting a late opk this month on top of another temp spike on cycle day 17...so I very well could only be 9dpo. Which still puts me in the game, however, intralipids wouldn't have been effective then. As well as Cycle day 17 fell on a tuesday, I stopped doing the deed on that sunday. But sperm can survive up to 5 days so that really doesn't matter if I ovulated 2 days after the last time we had sex.

  Either way, I guess I will just test until I get my period. Which will be next week at some point. Why not just not test until my missed period you ask? Because the sooner I know if I am, the better because the second I get that positive - will be the second I will schedule another round of intralipids. The moment that baby implants is crucial to this treatment. I need my body to be calm and to keep my nk levels down during that crucial time. So unfortunately, I cannot take the wait and see approach.

  I get so jealous when I hear stories of women who say "I didn't even realize I missed my period and before I knew it, I was 6/7 weeks along"! Just clueless that they were even expecting. I hate having to be so calculated about this. It's not fun. It's not exciting. It's like homework. Stressful homework before the big exam. Worried if you are going to pass or fail. Yeah, not fun at all.

Another waiting post.

Still not sure when/if I ovulated this month which is a sucky feeling because I have no clue if the things I am doing are timed accordingly. The only time this has happened was in November 2015 - and funny enough - I got pregnant that cycle. So perhaps just going with the flow and not so focused on how many days past ovulation I am might be a good thing. Less stress and worry perhaps? Not being like "I'm 11dpo...I should be seeing something on these tests by now!!" haha! This month I just have to really wait and see. Who knows. I am so tired of dealing with all of this anyway, that I am at the point of whatever.

  Another thing I have decided is that if this doesn't happen again this month - next month I am not going to do intralipids at ovulation. I don't know how that will play out - but I cannot keep throwing down $450 for a) something I cannot time accurately enough and b) something I cannot afford to do on a monthly basis when I am not getting pregnant anyway. If I could have a nurse on standby it would be one thing - but I HAD to get my intralipids done on Friday because they don't do late visits, or short notice visits. And weekend visits cost extra. So I was forced to do this on a friday when I wasn't even sure when I was going to O this month. And it's only effective for 2 days before ovulation. I just can't keep taking chances like that financially. This month - if I didn't ovulate over the weekend - that was $450 down the toilet again for nothing. And if I didn't get pregnant this month - still $450 down the toilet. It's just too much. So I have decided I will just schedule an intralipid shot if I get a positive pregnancy test and hopefully that will be effective enough. But who knows anymore. I just can't keep digging myself further into debt for nothing.

 All of this has become such a pain in the ass. I once thought having a baby, and trying for a baby was going to be so much fun and so exciting! I never thought in my wildest dreams I would be living this nightmare for 2 years now. And I don't feel any closer to an end than I was 2 years ago. :(

Funky temps

Usually my pre-O temps fall down in the 97.45 to 97.60 range, then after ovulation, they go up to the 98.04 to 98.45 range and stay there until I get my period or stay up if I am pregnant. Well, last thursday my temp was 97.70 - since then it's been raised to 98 degrees then falls down to 97.90 then back to 98 or higher. Needless to say this is very frustrating because in order to predict when you ovulated - you need a clear shift. .2 degrees or higher. Thursday was cycle day 12, and I'm pretty sure I didn't ovulate that day. My cervix has been open until today - today it felt closed. I also took an OPK from thurs-sunday and yesterday I got the most positive out of the bunch. So I am assuming due to the slight ovulation pain I experienced on Sunday, and my sore boobs yesterday and today that I ovulated either late Saturday or sunday. I wish I could confirm with my temps but unfortunately I can't go by that tool this month.

  So I am guessing I am on 1DPO and I began taking my prednisone today. I will do my lovenox injections starting tonight and will start progesterone tomorrow (just to be sure). It sucks because I want to time these medications accurately but cannot due to not knowing when. So I just have to wing it. I had another intralipid infusion on Friday, so I really do pray I O'd over the weekend for it to be effective. Anything over 2 days it becomes useless.

  So here we go. Let the waiting begin!

Oh in other news, I fell down the stairs and sprained the crap out of my ankle on Saturday! Not the first time I've down that too. I am such a klutz! So now I am hobbling around, in pain. Just stick that into the pile of sucky things I have to deal with! haha! Yay me!

Gearing up again

I have reached cycle day 9 and this weekend we will start trying again. It's crazy how fast time flies. I just got back from a pre-anniversary weekend getaway at a family friends cabin. Just me and the husband and our dog Bailey. It was a perfect getaway. Surrounded by trees - no one around. Just us and nature. It was so peaceful. In the mornings, we'd sit on the porch and watch the deer play and graze right in front of us! It was almost out of a storybook. So yeah, needless to say it was very nice and much needed.

  Now I am back to the grind and prepping to start up again this month. I have weaned myself off steroids and will be off of them for a solid week until I start up again around ovulation. That will give my body a little break in between. I've been on the plaquenil now for a little over 2 months now. I am really hoping it's taking effect in my system. They say it can take up to 3 months for it to be at it's strongest...but I hope this is still enough time to make a difference. I am a small person, so hopefully that will work to my advantage.

  I will be doing another course of intralipids again this month - so I have to obviously time ovulation accordingly again. I will start testing the OPK's on thursday. The last cycle ended so weird, and my period was just bizarre - so I hope I can predict everything ok this cycle - and that things have sorted themselves out down there. It's hard to predict ovulation when you have wonky cycles sometimes.

 Anyway, so here we go again. I am bracing myself for another very long two/three weeks. I am going to try not to stress, although I said that last month and by the end of it all - I completely disregarded that rule. It's hard sometimes to not get all worked up when you are trying so hard to make something work, and it doesn't. So I will just take things one step at a time and see where the road leads this time. Will update when I know more. :)

I'm out.

So I had an interesting weekend. As I was 15dpo and still pulling in negatives on my tests...I pretty much gave up hope for the month. With cramps starting in and just that feeling you get when aunt flow is on her way - I decided to stop the meds and just wait for the inevitable to happen. I also decided I had deprived myself of sushi for way too long and that my body needed it. Fortunately I have an amazing husband that knows when to not say no during certain times I request it. It was very delicious.

  The next morning, I had a few tests left. I decided, I was 15dpo, my period should have started but didn't. So why not? 3 minutes later I was staring at the most faintest line. But not to the point where I am holding a flashlight to the back of the test to try and see it. I could actually just see it with my own two eyes. I sent a pic to my sister, and she too saw it. Could it be?? It was so faint that it really made me nervous if it were true. At 15dpo, you should have a pretty defined line by then. I went ahead and started back on my meds just in case.

  The next day, I retested. Again...a little faint line, but not any darker than before. Same color, hardly visible, You would totally miss it if you weren't looking hard enough for it. But nonetheless, it was there. When I went to put in my vaginal progesterone suppositories that morning, I felt my cervix while doing so just to determine if it was open or closed...and it was open. Oh here we go. Faint positives, open cervix = never good.

  So now I am faced with two things. Are these false positives, or am I about to experience yet another chemical. No more than 2 hours later...I started spotting. Cycle Day 31. Which is completely normal timing for my period. (I average between day 28-31). My other chemicals were so much different. I would have a very pronounced line from like cycle day 10-12, and then wouldn't miscarry until cycle day 35-40. So this one is a little weird. Anyway, later last night, I passed tissue. Very distinct tissue that (sorry to get graphic) but you couldn't pull it apart. I never pass tissue like that during my regular period. Another weird thing to counter that, is that my bleeding wasn't bad at all. I had some cramping, my back hurt, and I bled last night - light/medium flow. Today....virtually nothing. A little brown spotting. I am not even wearing a tampon because there is no need! Usually my periods (or miscarriage) I bleed for at least 3/4 days. 1 day of bleeding and done? So bizarre.

  I just don't know what to think. I didn't test again this morning because I felt it was kind of pointless. Obviously one of the two happened (period or miscarriage) and I certainly am not pregnant. But it was all just very strange.

  I had a moment of weakness last night as well. I broke down. After everything I have done, after everything I have tried...to end this cycle this way...just as confused as ever. I just couldn't handle it anymore. I am tired. I am emotionally drained. The ending of this cycle was like a sick joke. A gut punch finale. Pretty cruel. I told my husband that I think I have one more attempt in me. But if that too fails, I think I am done. I can't do this anymore. The waking up and taking my temp every morning, the starting of certain medications on certain cycle days, the trying to pinpoint ovulation perfectly for intralipids, the expensive intralipid shots for nothing if it doesn't work out, the timed sex that has turned more into a science project than fun, the two weeks of constant tests, waiting, lovenox injections, vaginal suppositories, steroid pills, 8 billion vitamins morning and night, watching my diet so I steer clear of inflammatory foods...etc....etc.....etc. I just can't do it much longer. I don't have much more to give. 2 years of this....I am at the end of my rope.

  So we will just wait and see what October has in store for us. Maybe that will be the golden month. Maybe not. But I am just going to try and focus on doing everything I can to keep my head from going to dark places in the midst of all of this nonsense. Keep my eye on the prize so to speak. But in the meantime, understand that we just may have to start exploring other options soon. Maybe someday this nightmare will be over.

Still waiting

  The two week waiting period is the most brutal wait time. But as of yet, still nothing to report. I am either 12dpo or 10dpo right now. But my instincts are telling me I am 10dpo because my temp went back down that friday (cycle day 15) and my temps never go down post ovulation. And I typically (based on past charting) ovulate on cycle day 15. So it would all make sense that I would be 10dpo right now - which would mean it would still be slightly too early to get any results on a test. I am hoping by thursday I will know either way so I can move on with intralipids or I can stop lovenox. Either way, I am eager for a direction.

  I am feeling lots of symptoms of pregnancy, sore boobs, twinges in my ovaries, bloated, tired, etc..etc. But I am also on progesterone supplements so those can add to those symptoms, which means I cannot count on that whatsoever. I just have to wait and be patient.

  In the meantime, my belly is bruised from the lovenox injections, and I managed to boost my progesterone daily intake to 600mg which my doctor wanted without feeling any negative side effects as before (rapid heart rate). What I have been doing is taking the 100mg pills and using two at a time. (6 pills a day) So the mg is still low but still getting that 600mg daily. I don't know why that makes a difference vs the 200mg pills 3 x daily which I was originally prescribed - but it seems to be working so whatever.

  Other than that - same ol' ish different day! Hopefully in the next few days I will have more to report. Stay tuned!

Now we wait.

It's been a pretty busy couple weeks. This past week I headed down to the outer banks of NC for some much needed vacation time with the family.

  Weds I took an ovulation test and it came back positive. That was on cycle day 13! I know I said before that I don't really trust those, but I need to use every single thing I can to try and predict ovulation accordingly so I added it to the list of things to do. Anyway, it was shockingly positive on day 13 which means (according to them) I am going to ovulate within the next 12-36 hours! So I hurried and called my infusion nurse and begged if she could come that evening to give me the intralipid injection since I felt I would ovulate the next day or day after. She came and I got my infusion! So nice of her to do that. 

The shot wasn't bad. She injected it into my arm, sat with me for 45 mins to make sure there wasn't a bad reaction, taught us how to take out the needle, and then left. I had to sit there for 3 hrs! We did nothing right when we took out the needle! Haha! Blood everywhere! But got it under control. She will have to reteach us next time if I hopefully get a positive pregnancy test this month. 

  So we did everything we could do to hopefully have gotten the job done. Now for the two week wait to see if it was all successful. I can't believe we are finally trying again. I'm trying my best to be calm and chill through this. I am accepting the past and the realities of it all. But still remaining hopeful that maybe this time will be different. 

  So now we wait. Stay tuned!! 

Quite a cocktail list

***update: Just spoke with my doctor and she feels I only need 2 intralipid shots this cycle, the first to be a day before ovulation. So I won't be having 3 shots starting thurs. Which is fine by me cause that saves me $$. Now I just need to pinpoint when the hell I am going to ovulate so I can get the shot the day before. THAT is going to be a task. ugh***


I am really trying to pull out all of the stops here for this cycle. I think I have done everything known to man to try and make this work. I just scheduled my first of perhaps 3 intralipid shots. I will get the first round this thursday. Then I will wait again do the second round right before ovulation. This is crucial because is has to be timed accordingly - which will be very hard because I only can tell AFTER I ovulated. So I am basing everything just on my past cycles which day I think I should ovulate. As well as temping, monitoring my CM, and all that jazz as well.

  I don't trust ovulation predictors. I don't know if it's because I have a long LH surge but they never worked for me. I would get days of positives. So I don't go by those. So hopefully I can peg this just right so it is most effective.

So far to make this work I have done:

Lit therapy,
Intralipids,
Hydroxychloroquine,
Predisone (steroids)
Lovenox
Baby aspirin
Omega 3 supplements
Pine bark
Reversatrol
Metanx (folate)
Prenatals
Vit D
Vit E
Tumeric
EGCg green tea extract
progesterone


And I have excluded endometriosis as being the culprit.
The only thing I haven't done is the IVIg.

I've been through the ringer these past couple of years...and I am hoping everything I am doing will be enough to finally have my baby. The only thing that will prevent it now is either my TNF still won't budge coming down, or my eggs are not viable. Which scares the shit out of me.

But all I can do is try. And I can be comforted knowing I am doing everything within my power right now. If I miscarry again, I will give it another try again. I feel I can do this....I feel this will happen. I have to continue to be patient. I have to continue to give it time. And I have to continue to tell myself, it's not my fault. I am trying..and that's all I can do.

Quite a cocktail list

I am really trying to pull out all of the stops here for this cycle. I think I have done everything known to man to try and make this work. I just scheduled my first of perhaps 3 intralipid shots. I will get the first round this thursday. Then I will wait again do the second round right before ovulation. This is crucial because is has to be timed accordingly - which will be very hard because I only can tell AFTER I ovulated. So I am basing everything just on my past cycles which day I think I should ovulate. As well as temping, monitoring my CM, and all that jazz as well.

  I don't trust ovulation predictors. I don't know if it's because I have a long LH surge but they never worked for me. I would get days of positives. So I don't go by those. So hopefully I can peg this just right so it is most effective.

So far to make this work I have done:

Lit therapy,
Intralipids,
Hydroxychloroquine,
Predisone (steroids)
Lovenox
Baby aspirin
Omega 3 supplements
Pine bark
Reversatrol
Metanx (folate)
Prenatals
Vit D
Vit E
Tumeric
EGCg green tea extract
progesterone


And I have excluded endometriosis as being the culprit.
The only thing I haven't done is the IVIg.

I've been through the ringer these past couple of years...and I am hoping everything I am doing will be enough to finally have my baby. The only thing that will prevent it now is either my TNF still won't budge coming down, or my eggs are not viable. Which scares the shit out of me.

But all I can do is try. And I can be comforted knowing I am doing everything within my power right now. If I miscarry again, I will give it another try again. I feel I can do this....I feel this will happen. I have to continue to be patient. I have to continue to give it time. And I have to continue to tell myself, it's not my fault. I am trying..and that's all I can do.

Let the games begin...

Aaaannnd we're off! I'm officially on day 1 of my cycle for this month! In two weeks we will start trying again! I'm a big ball of nerves!! I have decided that I think I am going to hold off on retesting my TNF levels. I just don't know if I want to handle the stress of that. I'm thinking that remaining naive may help with the stress levels. Because if I retest and it's not down, then I am going to start stressing even more - which just doesn't help matters at all.

  I am also going to discuss with my doctor about doing a few intralipid shots. I should start that asap and do another one upon a positive pregnancy test. Just adding another thing to help calm my immune system. Can't hurt (well it will hurt my wallet) haha. But I will do everything I need to do to get it done.

   But yeah.....here we go!

Blogging

I just read the most inspiring blog! It was almost like I am reliving her hellish nightmare because she went through the EXACT same thing I am going through!! Only she has a very happy ending!!! She had 5 miscarriages, diagnosed with auto-immune issues, took the same steps I'm taking to treat it (minus the LIT), took HYDROXYCHLORIQUINE which I pushed so hard to get and then BAM. Got pregnant and it stuck! Now she has a beautiful little girl!!

  I can only hope my path ends as similar as hers! I am praying for that positive outcome! I don't know what this cycle will bring. I don't know if I have been on the hydroxychloroquine long enough for it to really do it's job! I don't know if I am trying too soon and setting myself up for failure again. But what I do know is I can't stop trying. Her blog was called "try, try, try again" and it's so true! You cannot quit! You must gather the courage and strength to ultimately obtain your dream! I cannot say this drug will be my saving grace. I don't know when or if I will get my happy ending. I may still be in store for more heartbreak before I finally get there. But I won't give up.

My inspiration:

http://www.mirror.co.uk/news/real-life-stories/kelly-moseley-mums-baby-joy-3030511

Hits home.

"I don't know what's right and what's real...anymore.

And I don't know how I'm meant to feel, anymore.

When do you think it will all become clear?

Cause I'm being taken over by the fear."

Mindscapes.

When I was younger, whenever I would go through some hardships, I would usually take it out on my hair by either cutting it some crazy new cut, or dying it some random color. These days, I have been going crazy on obtaining things and selling things to "renew/replace" items in my house. I didn't even realize how bad it's become until my husband just pointed it out to me today.

 Over the past couple of months, I've replaced my patio set, guest room, master bedroom furniture, etc.etc.etc. Today I think he hit his limit when I told him I was thinking about listing our dinnerware for sale so I could replace them with another set. Why you ask? Well, I don't know. I found another set I like - and well, I don't know why. Just because! He said to me "I hope you fill whatever this void you are trying to fill soon, so you can just be content with the things we have". That hit me in the face hard - because he is so right. I have been doing everything I can these days to occupy my mind and thoughts that I have become almost obsessed with renovating our house for no reason!

  Granted - it's always fun to decorate and refresh your household items. But I realized it has become more than that today when he pointed out the dinnerware replacement. I am not a psychologist, but it would make sense that I am trying to fill a void. Moments of happiness are there in my life, but there is a piece to the puzzle that is missing in my heart. Hopefully it won't be too much longer now that I can have that completeness. In the meantime, hope my husband can put up with my craziness for a little longer!

Post op appt/Dr. Switch

Today I went to my post op appt. Everything went as I expected - no endometriosis to be found and everything looked great in there. So I can officially cross that off the list of things. So before I get started with the appt. I had quite an interesting week. I have been pounding the pavement to find a doctor to prescribe me Plaquenil. (hydroxychloroquine). ((the drug I have been wanting my specialist to prescribe to me)). I knew she wasn't going to - so I contacted my primary care doctor about it. He took a step further than my specialist would - and actually researched it for me, however, he felt he couldn't prescribe me something on the basis of what I wanted to use it for (infertility) since he knew nothing about it. Which is understandable and at least he was willing to look into it for me which I appreciated.

  So I contacted my fertility specialist again (shot in the dark) attempt and she yet again shot me down. She suggested I see a rheumatologist and that she cannot help me in getting it. Ok. FINE. So I made an appt with a rheumatologist for the 9th of August. NOW. Today I went to my post op and talked with my doctor there. He is very nice, and actually listens to me and my concerns. I told him about plaquenil and stated the reasons why I felt it would benefit me. And guess what. HE is going to prescribe it to me!!!!! On top of that - he wants to care for my issues and wants me to entrust him in my pregnancy journey. He is not an immunologist - and isn't too familiar with how it relates to pregnancy loss - HOWEVER - he isn't opposed to giving me the right medication he feels will help suppress my immune system during pregnancy. So on top of the plaquenil, I will be on a low dose steroid which my fertility dr wanted to put me on anyway. We will retest the TNF levels in a month and see where we are at.

  FINALLY I found a doctor who understands and is willing to help me!! And thinks outside the box!! I couldn't be more thrilled! So I get to start this medication tonight!!! I am not saying this is going to be my miracle drug - but it's definitely worth a shot!!! And for the steroid and plaquenil - it cost me a total of $14!!! Sure beats the $2500 per shot of IVIg if it works!! God I hope it works!! It's my last ditch effort to try and do this without breaking my bank account. Praying for miracles over here!

  Anyway, so that's the latest and greatest! I will keep you posted on how it's all going! But woooohoooooooooooooo for the Plaquenil! Finally!!!!

I lied.

Well, August is off. It is now being pushed to September! I know, sucks!! But my doctor thinks it's best I wait a month from surgery before trying again. She wants me to allow my body to heal and two weeks after surgery to try again just isn't enough time. I agree, reluctantly.

  So with another month to sit around, I have decided to become super proactive to gain a prescription for hydroxychloroquine. That drug that seems to be all the rage in the UK and around the world in helping women bring down their TNF levels. Yet my doctor seems to be completely tunnel visioned on what she wants to do to bring it down, and won't think outside of the box. So looks like I am going to have to for her., I have written my primary care doctor about it, and have made a pretty solid case as to why he should prescribe it to me. He is going to look into it and get back to me on Monday.

  Regardless if he decides to prescribe it to me or not, at least he is taking the time to research it and consider it for me. My fertility doctor just shut it down without a second thought which really pisses me off, as I have stated in previous posts. It takes a simple google search. She would rather put me through a treatment plan that my insurance won't cover, and will cost thousands of dollars, vs investigating a drug that my insurance WILL cover and will cost me maybe $10! The drug has stated it has hardly any side effects, is FDA Approved and is even safe to take during pregnancy. So WHAT is the big deal?! Oh let me just answer: it's cheap, and they won't make money off of me. That's why.

 So I am praying my primary care doctor - who this really doesn't effect one way or another - will give me the prescription so I can just try it for a month and see. If my levels don't go down in a month of taking it - then I will stop. But I just want to try!!! If he doesn't prescribe it - then I will make an appt with a rheumatoid doctor and try and get it that way. I don't care how many doors I need to knock on. I am determined to get this because from what I have researched and read, it seems to really work for some! I am willing to try anything at this point! GIVE ME THE DRUGS!!! hahaha

 I will keep you posted on my mission. I am not going down without a fight. And I am REALLY considering finding another fertility specialist. It just sucks when you have been dealing with someone for a year, to up and start over with another. But I am reaching that point. I need to find someone who will listen. That is key in a situation like this.

Post surgery

The surgery is done and boy and boy am I in pain! There is good news and bad news. I guess both is good news if you are a half glass full kind of person. I'm not. haha! The good news is that I don't have endometriosis. The bad news, is that I don't have endometriosis. I know what you're thinking....huh?! Let me explain. The point of this surgery was to find an explanation as to why my TNF is high. I was certain it had to be endometriosis. I had all of the symptoms of it and it would be an inflammation disorder which would explain so much. But it's just not the case. They did find one small little patch of discoloration tissue which he went ahead and took a biopsy of. But it wouldn't be enough to trigger this issue. And he had to reaaaallllly look for it, he said. His exact words were "everything in there looks pristine!" which is great! But wtf am I having miscarriages?! Why is my immune system being crazy if it's not endo?!?

   So basically, I am still left with no answers. Well, not true - I do have one answer...I know now it's not endo that is causing my TNF. So I can cross it off the list. And I do know now that I have truly looked into everything I can look at to figure this whole thing out. So if I go on to still miscarry - I know I have done all I could to prevent it so far.

 Where does that leave me from here? Well, I will go on to have my period this week (if it's not too messed up from surgery) and then I will go in to get my TNF levels retested. I will then decide if I need to do the IVIg and steroid treatment. My husband and I were talking, and this may seem a little wreckless, but we may just want to try again and see if the LIT would be enough to sustain the pregnancy. Either way, we are trying again in August. I have decided that I am going to go ahead regardless. I don't have much time to waste since the LIT is time crunching. And I don't want that to be for nothing.

 I will keep you updated on the progress of this month and how it all will unfold. I am bracing myself for whatever will come out of it. Whether good or bad. I know the realities and statistics and I am prepared. But I have to keep trying.

 On a side note - I have to give a shout out to my amazing husband. You never really know love until you experience someone who does anything and everything they can to help you in your time of need. I know it's what they are supposed to do. But I have never had any man be there for me the way he has. From just making me food, to helping me use the bathroom. He goes above and beyond anytime without any gripes. I am truly fortunate to have someone like him. He's quite special.

Ok that is enough for now. This upcoming month should get interesting. So stay tuned...

July 21st

Well - I got the call from the schedule coordinator for the Endometriosis surgery and turns out, they got me in for July 21st! Which means, this will get done before my next period - which means, we can possibly try again in August!! It's great and terrible timing all in one - because that is the week my sister and her family are coming to visit! But, she understands and we just have to throw a quick surgery into the plans. lol

  It will be interesting what they find out. It's good both ways I guess. It's good if I do have endo - because that may give me a reason for my high tnfa and perhaps control it. But it's good if I don't have it - because, well, yay I don't have endo! One less thing! lol. So either way, I am going to be ok. I will either treat it, or I won't have to worry about it.

Thing that sucks is - if I don't have it - then bring on the expensive drugs. Yikes. Not looking forward to that expense. I will retest my TNFa a week or so after my surgery to see if that made any effect. Wish I could wait a bit longer to retest - but my period will be coming shortly after so I need this all squared away so I can prep for August. What a fiasco I tell ya. Everyday it's something different. A bumpy, twirly, up and down roller coaster that doesn't seem to end.

Well, let's see what they discover...stay tuned...

Frustrated

I went to a doctor for a consultation to see if he could do the surgical laproscopic procedure to see if I have endo or not. I waited almost a month for the consult and now I have found out that they cannot schedule me in until another month (August). Which means I won't be able to try again until Sept. if it all works out. That will be 5 months with LIT and it only lasts about 9 months in your system. Ugh. I don't know what to do. Should I risk trying again and suppressing the TNF - or should I just wait until August to see if this is even an issue?! I'm so sick of waiting!!!! Just more crap upon crap. BLAH.

Follow up

I had a followup with my doctor today regarding the results. It seems my NKCells look decent - but TNFa is 41.5 (which I had it wrong by typing 45.7 in the last post). Regardless, still high. My AMH levels came back a little weird too. They came back at 10.45 which is really high for someone my age. The last time I got tested for AMH last year in Sept it was 3.71 which is normal...so I have no clue how or why it bounced to 10.45! But from what I read - it could be an indicator of PCOS. Which I haven't been diagnosed with ever and don't think I have. I have regular periods, and ovulate regularly. So it's a little weird to me. My doctor thought it was an excellent number - which made me scratch my head since I am 37 with an AMH that bounced to a number that perhaps an early teenager would have. I am sure my doctor is sick of my constantly questioning things - but I don't care. This is my body and if I want to know more - or have more questions...I'm going to ask. I am not shy and the way I see it - is she is working for me. I am paying for her services. So I don't care if I am a bug-a-boo when it comes to my health.

  Anyway, my doctor. That is another story. I like her, she is really nice...but sometimes I feel that she isn't that clued in. There is this drug that is commonly used in the UK that has proven to help bring down TNFa significantly. And I asked her about it at my appt today. She heard of it but never used it or prescribed it before. So when I got back to work - I saw that it is avail in the US and the price of it isn't that much. I wrote to her to see if it's something we could try and she shot it down. Stating that she was unfamiliar with it and doesn't want to prescribe something she is unfamiliar with. Ok, that's respectable. I get that. BUT. Here is my issue. If something is commonly used amongst reproductive immunologists around the globe and has proven to work - and it's available here. Wouldn't you, as a doctor, do some research on the drug. Find out more about it and perhaps see if it could be helpful to your practice? She just shot it down because she didn't know much about it. But this could be a cure for me! LEARN about it - and then if you feel it's too risky - deny it. But don't just shut it down and remain naive.

Ugh. It's really frustrating when I am doing basically homework to figure all of this out for myself, but I can only go so far with it because another person who could help - doesn't care to do any research to help. Sometimes I wish I could find a new Dr. but there are very few in the area - and I don't want to go down another long twisted road when I have already gone so far with this one.

Anyway, so I have to now go to a consultation tomorrow with a Dr. to discuss Endometriosis laproscopy. I am nervous for that. I don't feel comfortable with someone poking around in that area. But I guess it needs to be done so I will do what I have to do. So we will see how long it will take for me to even get an appt for the procedure. Shit, the consultation took 3 weeks to get! Very annoying.

So July clearly is a bust for trying again. Doubt August will be in the cards too if I don't get this surgery done right away. But I am glad that perhaps I am doing something to maybe nip this TNFa shit in the ass. Because if this can cure it - everything else should be quick to follow. But if it's not the issue...I am up a long hill battle. I will post more tomorrow when I wrap up with the Dr.

Stay tuned...

Bad news.

Well not even 5 minutes after writing the last post, I got some results back. And it's not good. My TNFa came back at 45.7 which is up from 37.1. Not good. Anything over 40 can damage egg quality they say. Clearly I am beyond disappointed. I really wanted to try again in July and now that has completely gone to shit. This has been the most frustrating ordeal I have ever experienced.

  I definitely am keeping the consultation for the Endometriosis laproscopy to see if that is what is causing the issues. I pray it is - because then I will finally have a reason. Because I am baffled as to why this is so high. It really sucks. So now, depending on when they will even schedule me in for the surgery - things are starting to get pushed back into the Aug/Sept timeframe. Which makes it 4-5 months since the LIT treatment which only lasts in your system for 9 months. Clearly time is an issue here.

  I feel like I have been gut punched. I feel like any hope to having my own child is just getting to be a dream that will never come true. I get so angry that so many women can get pregnant and enjoy their pregnancies. But I will NEVER get to have that. Even if I do get/remain pregnant - I will never enjoy it. Those entire 9 months will be lived in pure fear and worry. I won't get to joke about "no more after this!" or "This one was an accident" or even get to decide "we were only going to have one, but now we might go for another". I will be lucky if I get one.

 I am sorry. I am having a pity party for myself, and just downright sad. I am just so beat up. You can only be kicked so many times before you can no longer pick yourself up off the ground. I'm tired of getting up. I'm just so sick of it all.

  But I will pick myself up this time. And I will keep going. I have a little fight in me still, and I am going to do this for me and my husband. I cannot give up now, I have gone way too far. So I will just keep on doing what I need to do. Hopefully, someday, it will work out.

Reproductive Immunology

I stumbled upon this very interesting website regarding Reproductive Immunology. It's really informative because it describes exactly what everything is, and describes the treatments for each immune issue. For anyone who is reading this and thinking I am speaking a foreign language when I talk about immune issues or anyone who is actually GOING through immune testing...I highly suggest you read it. I have a lot of these issues and I talk about them often on here!

http://www.immunologysupport.com/treatments.html


P.S. Hopefully will get my results back today or Monday the latest! I moved my follow up with my Dr. to Tues the 28th! I am still keeping the consultation with the other doctor regarding Endometriosis - because if that is something I want to look into the future - then at least I got the consultation part out of the way, ya know?

Anyway - stay tuned for hopefully good news!

Testing...aggainn

Tomorrow will mark my final retesting of my NKCells and TH1/TH2 (to see if my TNFa has lowered). It's a big deal because this will lay down the bricks to see if I can TTC in July or not. I have several options based on what the results are.

1. I have an appt set up on June 29th for a consultation with a dr. regarding endometriosis. I want to see if I can get a laproscopy done to determine if I have it - and if so - to treat it. I have read that endometriosis can trigger inflammation which raises TNFa. So if I can find the culprit as to why my TNFa is being spiked - then maybe I can get it under control once and for all instead of just suppressing it with drugs. The cons of this is that the surgery always runs risks, and also - it will push our TTC time back to like Aug/Sept. Which is fine, but the LIT only lasts in your system for about 9 months. We are already on month 2 since the treatment. So I don't really have time to waste here.

2. If my TNFa is low enough to where it can be controlled/lowered with a shot of intralipids or sterioids, then maybe it can be suppressed enough to where it won't matter if endometriosis is an issue if I can keep it under control. Cons: drugs. Which I really don't like.

3. IVIg. This apparently is the best way to control TNFa. It resets your immune system and brings everything down. Con: EXPENSIVE. I really don't wish to spend $2500 per shot here. I mean, what if I get this damn shot - and I don't get pregnant right away! It's like tossing money down the toilet!!


So clearly you see my dilemmas. I have been taking so many supplements that I am PRAYING they will be good enough to knock it down the rest of the way naturally. My nightstand looks insane. I am on so many things! haha! I mean, the vitamins I have been taking knocked it down from 61.5 to 37.1 in a month. So it will definitely be interesting to see if it takes it down even further since my last test. I have also added some new ones in the mix so I am just praying they do the job!

Other than that...just have to wait and see. I really can't wait to try again. But I am nervous as all hell!! It's pretty scary stuff, but unfortunately, ya just have to grin and bear it in order to hopefully bring home that little rainbow. I have several virtual friends that I made online on my support forums that were in the same boat as me. Well, recurrent miscarriages, but different issues. But one just had a beautiful baby girl and the other is almost out of her scary 1st trimester! I am so happy for them, and hope that I will be next in line! We shall see how my cards play out....

New plans

I had my followup with my doctor last week. We went over the upcoming plans that we will need to prepare for TTC again in July. Basically, with the LIT procedure being effective, my only real obstacle that I have left is the high TNFa. I need to get that number down below 30. I have already been able to drop it down from 61.5 to 37.1 with supplements which is amazing. My doctor was really impressed - but it's not quite there. So I will keep on the supplements - even adding a few more in the cocktail - and retest everything in 2 weeks to see if there is any more improvement.

  If there is improvement - she will likely put me on intralipids to hopefully keep it down. However, she said the most effective thing to do to specifically target TNFa would be the IVIg. Which would suck because it's $2500 a shot. I feel I will have to do this regardless if it comes below 30 or not because inflammation can increase once pregnant and it can't come back up again. Sucks. '

  It's all so scary. One little thing can go wrong and boom, it's all over again. I have allowed myself 6 months to mentally prepare myself again. I gave myself a lot of time to get my mind right. While also clearly doing things to hopefully prevent it from happening again. But the thought will forever my engraved in my mind that nothing is guaranteed, and that another miscarriage is still very real and very likely. But it cannot stop me from trying again. I will do everything I can to try and prevent it. But it's just a sad fact I have to face that it just might happen again.

  Anyway, one step at a time. Right now, I am trying to eat better, exercise, and just live in the moment as best as I can. We will see where I am at in 2 weeks. From there, I will decide what the best course of action is. Baby steps. Yep. Baby steps to hopefully get baby steps one day. :)

Results!

Got some great news today! I received the results for my LIT treatment as well as my updated TNFa tests, and LIT worked!! My numbers look amazing!


                                               LIT treatment before (top) and after (bottom)

Needless to say there have been some major improvements here. I will start with the LIT. The most important aspect of this test apparently are the B-Cells IgG. Specialists say they prefer this number to be above 50% and anything less than 30% can lead to miscarriages. Clearly, mine were insanely low at 1% before the LIT treatment. Which means my body wasn't producing any protective antibodies when pregnant to help protect the embryo from my insanely active immune system. So in turn, my body was attacking the embryo and viewing it as a foreign object. Now my numbers are 99.9% which means I have developed the antibodies needed to protect the embryo for future pregnancies! Amazing news!! You can see the test went from negative to positive! So I am naturally ecstatic over these results! Those trips to Canada were not for nothing and I am excited to see if this will really be the difference we needed!


                                     TH1/TH2 (TNFa results) before (top) and afrer (bottom)

Now on to this other important test. As you can see my before numbers were off the charts high at 61.5%. They say anything above 40% can damage eggs and anything over 30% can cause miscarriage. So I have been taking the natural supplements (3 grams of omega daily, 1200mg of NAC daily, 100mg pine bark, and 600mg Reservatrol daily). I was on these supplements for probably a month before I retested and I am really happy to see that the tests came back much lower. Now it's still in the high zone...we need to get this below 30 before I can start trying again. But I feel now with neupogen or humira - that it will help get this down where it needs to be. I don't understand why my TNFa is so high to begin with. They say it can be flared by Rheumatoid Arthritis, Endometriosis, or Crohn's disease. I wouldn't be shocked if I had Endo. I have always had painful periods so it wouldn't surprise me. It also wouldn't shock me if I have Rheumatoid Arthritis. My mom has that so it very well could be inherited. Whatever it is, I am glad my body is responding well with the natural supplements. And hopefully more specific medication for this issue can knock it down under 30.

  I have my followup with my doctor on June 2nd to go over everything. I want to begin trying again in July - so we have a month to get this all situated. But I am really optimistic for the future now and eager to see if everything works. I am still staying grounded because with my history - how could I not? Nothing is guaranteed and I can't expect that these will be my golden tickets to pregnancy. But I am so excited to finally be moving in a direction!! :)

Retested...and now we wait.

So yesterday I went in to get retested for the LAD (to see if LIT worked) as well as the TNFa. Now the waiting game begins. I hate this part because I just want to know now!! But they take sooooooo long to get you the results! I am hoping it's not like last time where it almost took 2 weeks! That will be brutal. But it's done!

  The retesting kind of was a nightmare. Apparently the phlebotomist up and quit suddenly - and left my nurse high and dry doing the tests. Well she didn't know what color tubes the specific blood test was used for and we had to call the lab that runs the tests to walk her through what she needed to do with it. Naturally this kind of upset me because I don't want any hiccups with this retesting. The blood has to arrive at the lab within 24 hours - I just hope it got there in time. But I am going to try and not stress...we will just wait for the results.

So that's that. Stay tuned...

And more changes

Things keep getting delayed but this time it's my doing. I have decided to start trying again in July. June just seems to rushed - and on top of that, we are going to be traveling to my Dads in Tennessee for the 4th of July, so I don't want to be in that crucial 1st week of pregnancy while traveling. There would be nothing more horrific than to miscarry again while on vacation. So it is just best to just be home during that time.

  Sooooo since there is no longer any rush...I pushed back the retesting of the LAD and TNFa to May 23rd and have a follow up with my dr. on June 2nd. From there we will decide what next steps to take. I am also hoping that will allow enough time for these supplements to start taking effect in hopefully naturally lowering my TNFa. So we will see...

  But yeah, I am feeling more comfortable with this plan of action now. As much as I am eager to start trying again...I just simply don't want to rush it, and I don't want to be traveling. After the 4th I am not going anywhere until September so that will be ideal.

  So here is to a month of just relaxing and sorting it all out without rushing! :)

Retesting

So I got these supplements that I wanted to take for a bit to help bring down my TNFa, so I was going to push my retests back to the 24th of may to give them some time to maybe take effect in my system before I retested everything, but as it always goes - my doctor will be going on vacation the last week of may/first week of June...so now I need to stick with the original plan of testing on the 16th. Which kind of sucks because now I will not be able to tell if these pills are really benefiting me or not.

  And I cannot wait til she comes back because if our plans are to try again in June - then I need to get all of this taken care of before I ovulate again around the 9th. Bummaz. I have been taking the supplements for a week now, so maybe they did SOMETHING to help bring it down. haha...doubtful. I just know I am going to have to take some risky ass shit like Humira or neupogen to get that level down and I really don't want to take those. They apparently give you a higher risk of developing cancer later on because it messes with your bone marrow. Not something you should really f$ck with if you ask my humble opinion.

  I am trying to not stress, I am working out, I am attempting to eat better (still have lots of work to do on that lol) and I have been OD'ing on vitamins and supplements especially Omega 3 which I am hoping will help lower my TNFa as well. I am also EXTREMELY nervous to see if the LIT worked or not. But again, trying not to stress or worry - because those things trigger my TNFa as well. Man I can't do anything these days!!!

  Well I am just going to have to have the mentality of "whatever will be will be" because as much as I am trying to control this situation...there is only so much I can do. If my body is just simply not on board with all of this...I can't change that. So I have to learn to go with the flow and accept the outcomes as they come. (Again...so much easier said than done). But I'm tryin!

 So monday will come. I will retest. Then a weeks agony of waiting for the results and harassing my nurses for them, then my appt with my dr to see where we stand. As always, will keep you updated! :)

Plans

So after doing tons of research online I have come to determine that intralipids is not the best option to bring down my high TNFalpha issue. Which is what I feel strongly is the cause of my miscarriages. Apparently, intralipids work well with tackling NKCells directly - but TNF is a completely different cell - that does interact and "flare" with high nkcell activity, but is a completely different issue on it's own. The things to tackle TNF would be the IVIg injections, humira, or neupogen. I really want to do the IVIg injections. My issue is that it's super expensive. That would be AT LEAST $7500 for just 3 treatments. I am so much in debt that more money is going out then coming in...and it just keeps piling up. I hate it because I am not one to allow myself to be in such a hole financially. I pay my bills on time and like to have great credit. But this whole ordeal has just slammed me. And it's never ending it seems. Everyday I come home to a $100 bill, $400 bill, $300 bill for something. That shit adds up real quick. And I haven't even begun the super expensive treatment yet. That is just all for diagnostics.

  Fortunately my dad gave me $1300 to cover the LIT treatment which was a huge help. But that is just one of many that I need. TNF is also triggered by stress and I am not sure how I am going to control that since I am CONSTANTLY stressed. I need to find some sort of outlet to take my mind off of things and relax. I'm not a yoga person. I am a sit in a jacuzzi person. haha! Wish I had one. I did start working out yesterday and going to try to keep up on that.

  I just wish this whole nightmare would end. I am so ready for it to be over.


Restest for the LAD on May 16th to see if it worked. I guess we will figure out the complete gameplan afterwards, since we are shooting for June to try again. Yikes

2nd LIT down

Well it's finished. We just got home from our 2nd weekend in Canada in 3 weeks. We are exhausted! This month of April has been a whirlwind. Between two trips to Canada and a trip out to Cali for a friends wedding...we are more than ready to do absolutely NOTHING in May!!

So yeah, here we are now with our 2nd treatment of LIT done. My arms look like I am an OCD junkie with perfectly aligned track marks! haha

                                        

                            Yeah....so pretty, and just in time for summer! =/ (note the sarcasm)


The procedure went much like it did last time. We went in, husband got his blood drawn, we waited 3 hours, I got the injections, and then we were on our way home. I retest for the LAD test in 3 weeks to see if it made any difference. It will be very discouraging if nothing has changed on my results. I am also looking into getting the intralipids done as well soon. I have to start making the appts because I need to get this high TNF down before we can start trying again. So much crap, so little time. My brain is fried! Both with all of this crap and just from the insanity of our April traveling. It's times like these I really wish I had a jacuzzi!!

Anyway, so that's all I got for now! Will keep you posted when I go get retested! Hope everyone is well out there! xo