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...

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 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...