Memory tattoos and a Happy Ava

Hey there everyone! I know I haven't posted in this blog since I had Ava, but I didn't want to turn it into a baby blog. I want it strictly to be used as a resource for those who are still on their journeys. But I figured I would do this post because I was once asked if I was ever going to do a memory tattoo of the little ones that we lost before Ava.

  At first I was hesitant to do anything like that, as it would have been too much of a painful reminder. But I am in a different place now, and I felt that I was ready to fully let out all of those emotions and honor our 5 lost babies as well as Ava in a loving tattoo. So last saturday, we did just that. And here it is:

Keep in mind these were very freshly done so that is why there are still speckles of blood on them. But here they are and we love them! They mean so much to us! Maple leaves to honor Canada, which we credit so much to help bring Ava into our lives by allowing us to come into their country and giving us the LIT Therapy treatment. I truly feel that was the key that opened the door for us.

Obviously 5 hollow hearts to honor the 5 little ones that came and went before her. I will never forget them, and think about them all of the time. What gender were they? Would they have looked like me, or Brian? What would their personality have been like? How old would they have been now? Not a day passes that I don't think about those questions. So these five hearts represent them and the holes in my heart from losing them.

 And finally, a heart in the middle with an A obviously for Ava. Our world. Our beautiful, happy, smart, energetic, loving, sweet, bright eyed little girl. She has changed me, and changed our world so much. I never knew I could love something so much. Every ounce of my being bursts with love for her. She is just the cutest thing in the world. I am so happy we got these tattoos. I feel that the chapter has finally closed on our journey and we are actually finally able to just live!

 Ava will be 8 months tomorrow. 8 MONTHS!! When they say time flies...I mean...it literally FLIES. Within a blink of an eye! I try to cherish every single second with her. I don't want to rush her growing. I love to see her learn and do new things, but on the flipside of that....I'm like STOP GROWING!!! haha. She is starting to crawl, has 4 top teeth and two bottom teeth, her hair is getting longer and her eyes may stay blue. She is such a joy in our hearts.

 Here are some recent pictures!

Such a little model!! 

Anyway, that's all I am going to post on here. Like I said, I just wanted to drop in and share our tattoos since I think it's important for those still on their journey who were questioning how to honor their struggles. I didn't know how, and I didn't think I wanted to remember. But in the end - don't be afraid of the past. The past is what leads you to your future. It's what makes you who you are. It has made me stronger than I ever felt imaginable. 

Again, good luck to you all. Never give up. Your rainbow is waiting for you!! 

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. :(

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...

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.

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!

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

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!!!!

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...

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. :)

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! :)

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