I have them.
WTH???!!!
I wish someone had a camera on my face when the Dr told me this. She may as well have told me I had the bubonic plague. I mean, really, wth??? Am I 90? Or do I live in the Middle Ages?? Who gets shingles???
I was working at the Dr's office today, and asked the secretary if I could sneak in for a quick visit. It just so happened someone cancelled the first appt of the day.
Saturday as I lounged around the house and played Super Mario Bros. on Wii all day, I got this weird looking "rash" spot on the top of my belly, jut under my cleavage... but then along the side of my ribcage I had this weird burning/pain sensation. Kinda itchy, but not really. Sunday it got worse, and definitely no more itching. Just all pain. I didn't sleep well at all either night, and today it's continued around to the back of my ribcage, too.
After listening to my symptoms and looking at the areas in question, my Dr said she suspected shingles. I think my exact reaction was, "OH MY GOD, WHAT??!!!" She said it's leftover from the varicella strain and can exhibit itself in times when the immune system is weak (ie suppressed with prednisone). Great.
So I'm taking an anti-viral medication which should slowly relieve the symptoms. Luckily, she said young people usually recuperate fully, whereas sometimes older people can have residual discomfort after having shingles.
And, I think in an effort to make me feel better, she added that she's seen a number of cases of young women with shingles lately. Hmmmm.
What's next? Leprosy?
Monday, November 30, 2009
Saturday, November 28, 2009
2 Nagging Feelings...
AF has arrived in all of her bloody glory, but not before first psyching me out and making me think perhaps I was one of those women who don't test positive until day 18 or something. I am never late, in fact, when I'm not taking post-Peak hCG (which has been all but 2 cycles), I am like clockwork on medicated cycles. And she was no where in sight ALL DAY P+15. To add to it, I was having in and out cramps... you know, like the ones Sew and other women have had right before they test positive?
So, that was fantastic. I was all ready to go for blood work this morning when sometime after midnight I finally saw spot. Lovely. Thanks so much, AF.
I will be going back out to Chicago to get another Doppler ultrasound (biophysical uterine profile) on Dec 9th. Dr. Kwak won't be there, she's away for 3 weeks apparently, but she doesn't need to be there for the ultrasound. It is to check to make sure 60 mgs 2 x day is sufficient for my blood flow to the zone of implantation (remember, 40 mgs 1 x day was NOT enough).
But I also have these 2 nagging feelings. 1 is a feeling I've had since my surgery last April '08. In the surgical report, and in our post-op appt, Dr Steg.man talked about a cyst on my left fimbria, which he LEFT THERE, because it is, evidently, a very common thing for women with PCOS. He did say that both fimbria were "beautifully formed" and that this cyst should not be interfering with anything.
But ever since then, I've noted that I am much more inclined to ovulate from the left side than the right. Whenever I do ovulate from the right, it is almost always in conjuction with the left due to ovulation meds. (In other words, I cannot remember a time I have ONLY ovulated 1 follicle from the right side.) I have joked with my Dr that I am left-ovaried.
But is this a little more than a coincidence? The left is the side I'm always ovulating from, and the left is the side with that nasty cyst on the fimbria? I think I'll call and ask Dr. Steg.man about this.
Second, my very first immune testing was done in April '09 with the Sher Institute (SIRM), and the Dr. called to let me know the results were all ok, with the exception of 1 partial DQ Alpha match for me and DH, which "is not a problem in conceiving." I googled it immediately, because far be it from me to trust the advice of an IVF Dr :P but it looked like he was pretty much right. There is 1 partial match that is dangerous, but we didn't have that 1.
(In laymen's terms, apparently a DQ Alpha test is to ascertain whether you and your DH are too "close" a match for conception to occur. If the egg is recognizing the sperm as an entity too close to itself, or something like that, you cannot conceive.)
When I asked Dr. Kwak about it, she very logically explained to me that this test used to be used much more frequently, before we had the capabilities to test for all these other things, like NK Cells, and cytokines, etc. She said she and her lab actually ran the DQ Alpha test for the OJ Simpson case back in the 90s, and that it took a looooong time to do!!! (How cool is that?!) But that it is more of a "predictor" than anything else - like, how likely is the couple to experience troubles conceiving, type of thing.
But after 2 failed Kwak-protocol cycles, I'm beginning to wonder. Could either, or both, of these 2 things be standing in my way of conception?
I think SIRM treats DQ Alpha matches with Intralipids, the much cheaper version of IVIg. And I am thinking if this Christmas cycle fails, I may bring my barren ass back to the IVF Dr and demand some Intralipid treatment. Just for a cycle. See what happens.
And I'll also see what Dr. Steg.man has to say about the cyst on the fimbria... maybe he'll re-think its potential for harm after seeing how many failed LEFT OVULATIONS I've had since then.
PS. Can't wait for Prayer Buddies to start! Tomorrow! (It'll keep my mind off of my worst day of the year, 1st Sunday of Advent... putting up the tree... remembering the last year when we KNEW we'd be parents by this year... sigh...)
So, that was fantastic. I was all ready to go for blood work this morning when sometime after midnight I finally saw spot. Lovely. Thanks so much, AF.
I will be going back out to Chicago to get another Doppler ultrasound (biophysical uterine profile) on Dec 9th. Dr. Kwak won't be there, she's away for 3 weeks apparently, but she doesn't need to be there for the ultrasound. It is to check to make sure 60 mgs 2 x day is sufficient for my blood flow to the zone of implantation (remember, 40 mgs 1 x day was NOT enough).
But I also have these 2 nagging feelings. 1 is a feeling I've had since my surgery last April '08. In the surgical report, and in our post-op appt, Dr Steg.man talked about a cyst on my left fimbria, which he LEFT THERE, because it is, evidently, a very common thing for women with PCOS. He did say that both fimbria were "beautifully formed" and that this cyst should not be interfering with anything.
But ever since then, I've noted that I am much more inclined to ovulate from the left side than the right. Whenever I do ovulate from the right, it is almost always in conjuction with the left due to ovulation meds. (In other words, I cannot remember a time I have ONLY ovulated 1 follicle from the right side.) I have joked with my Dr that I am left-ovaried.
But is this a little more than a coincidence? The left is the side I'm always ovulating from, and the left is the side with that nasty cyst on the fimbria? I think I'll call and ask Dr. Steg.man about this.
Second, my very first immune testing was done in April '09 with the Sher Institute (SIRM), and the Dr. called to let me know the results were all ok, with the exception of 1 partial DQ Alpha match for me and DH, which "is not a problem in conceiving." I googled it immediately, because far be it from me to trust the advice of an IVF Dr :P but it looked like he was pretty much right. There is 1 partial match that is dangerous, but we didn't have that 1.
(In laymen's terms, apparently a DQ Alpha test is to ascertain whether you and your DH are too "close" a match for conception to occur. If the egg is recognizing the sperm as an entity too close to itself, or something like that, you cannot conceive.)
When I asked Dr. Kwak about it, she very logically explained to me that this test used to be used much more frequently, before we had the capabilities to test for all these other things, like NK Cells, and cytokines, etc. She said she and her lab actually ran the DQ Alpha test for the OJ Simpson case back in the 90s, and that it took a looooong time to do!!! (How cool is that?!) But that it is more of a "predictor" than anything else - like, how likely is the couple to experience troubles conceiving, type of thing.
But after 2 failed Kwak-protocol cycles, I'm beginning to wonder. Could either, or both, of these 2 things be standing in my way of conception?
I think SIRM treats DQ Alpha matches with Intralipids, the much cheaper version of IVIg. And I am thinking if this Christmas cycle fails, I may bring my barren ass back to the IVF Dr and demand some Intralipid treatment. Just for a cycle. See what happens.
And I'll also see what Dr. Steg.man has to say about the cyst on the fimbria... maybe he'll re-think its potential for harm after seeing how many failed LEFT OVULATIONS I've had since then.
PS. Can't wait for Prayer Buddies to start! Tomorrow! (It'll keep my mind off of my worst day of the year, 1st Sunday of Advent... putting up the tree... remembering the last year when we KNEW we'd be parents by this year... sigh...)
Wednesday, November 25, 2009
Happy Thanksgiving
I can't believe how much more I have to get accomplished before tomorrow!! This week has been insane, ay ay ay!
And in other news, I got a nice BFN this morning. 13dpo. And DH picked up the wrong tests, so instead of just the usual stark white where there should be a line, I got the added insult to injury "Not Pregnant" staring me in the face bright and early. Nice. Thanks. I should just get a t-shirt that says "Not Pregnant."
I'm at my Dr's office now, working 1/2 day - some people cancelled so maybe I'll sneak in for a quickie appt i.e. a begging-for-injectables appt.
Hope everyone has a wonderful Thanksgiving. I am going to focus on the things in my life that I do have, and I promise not to be depressed at all :) Someday, somehow, I will be a mother. I know that in my heart. For now, I trust in the Lord, and I thank Him for giving me the opportunity to pursue a new dream of mine, to become a NaPro Sonographer. I also thank Him for my wonderful husband, loving family and friends, and my stellar immune system (over-active as it may be, haha)!
God Bless everyone this Thanksgiving. And Bon- I hope you have the BEST Thanksgiving ever WITH your little turkey bundle of joy :)
And in other news, I got a nice BFN this morning. 13dpo. And DH picked up the wrong tests, so instead of just the usual stark white where there should be a line, I got the added insult to injury "Not Pregnant" staring me in the face bright and early. Nice. Thanks. I should just get a t-shirt that says "Not Pregnant."
I'm at my Dr's office now, working 1/2 day - some people cancelled so maybe I'll sneak in for a quickie appt i.e. a begging-for-injectables appt.
Hope everyone has a wonderful Thanksgiving. I am going to focus on the things in my life that I do have, and I promise not to be depressed at all :) Someday, somehow, I will be a mother. I know that in my heart. For now, I trust in the Lord, and I thank Him for giving me the opportunity to pursue a new dream of mine, to become a NaPro Sonographer. I also thank Him for my wonderful husband, loving family and friends, and my stellar immune system (over-active as it may be, haha)!
God Bless everyone this Thanksgiving. And Bon- I hope you have the BEST Thanksgiving ever WITH your little turkey bundle of joy :)
Tuesday, November 24, 2009
Secret Prayer Buddy/Santa
Bloggers of the world, unite in prayer this Advent!
Go visit Sew's blog for details.
This should be a lot of fun! Every blogger is welcome to participate, and the more the MERRIER (pun intended).
(If for some reason you cannot access Sew's blog, but would like to participate, please leave a comment here with your email address and I can hook you up.)
THIS BEGINS THE FIRST SUNDAY OF ADVENT, WHICH IS THIS SUNDAY!
Go visit Sew's blog for details.
This should be a lot of fun! Every blogger is welcome to participate, and the more the MERRIER (pun intended).
(If for some reason you cannot access Sew's blog, but would like to participate, please leave a comment here with your email address and I can hook you up.)
THIS BEGINS THE FIRST SUNDAY OF ADVENT, WHICH IS THIS SUNDAY!
Friday, November 20, 2009
Adoption Update
The "issue" that arose back in June has arisen again. This morning. I can't go into detail, but suffice to say, there goes our shot at ever completing the Homestudy with our current agency. (It's already the 11th month since we started the adoption process.)
If we were to start all over again, fresh, with a new agency or private adoption, it would require money. Of which we have none. And I mean, no income. Sure I get $ here and there from Creighton follow-ups, but that pretty much pays for my monthly vitamins. DH is not paid a salary, and has not been given ANY payments in over 4 months.
I can't even describe how I feel right now. Infertility sucks. NO. DOUBT. ABOUT. IT. But somehow, this is so much worse. Maybe because it was not infertility that lead me to adoption. I have always wanted to adopt, and in college, me and my 2 BFFs sat down and wrote a list of 5 things we planned to accomplish with our lives. On my list was: "To adopt at least 1 child." On my list was NOT: "To have at least 1 biological child."
To have my womb sewn shut by God is an excruciating pain, but one that I was learning to live with. To have society, on the other hand, tell me, "You can not, shall not, will not ever be a mother" is more than I can bear. Every night in my prayers, I pray for healing, yes, but my words are for me and my husband to become parents in ANY WAY. I was so honestly ecstatic during the adoption process (before June), that we were finally going to become parents. I didn't need to mourn the loss of having biological children, as some of the agencies recommend you do, because pregnancy was never my ultimate goal. Motherhood was.
When this first happened, it occurred to me that maybe God intended for our first child to be from my womb. So I went headfirst into immune testing/treatment and discovered a diagnosis which will affect my fertility forever. My clotting factors. Proven by Doppler ultrasound, I have ZERO BLOODFLOW to the zone of implantation, even with 40 mgs of Lovenox streaming through my arteries. This means, I will never, CAN never, get pregnant and implant unless I am taking twice daily injections.
And that is not something that a) I can afford to do for another 20 years, or b) is healthy to do for another 20 years. At some point, yes, I will need to stop TTC. Unlike many other people, who may always have "the chance" of conceiving some day, I will not.
And now my only other road to motherhood has been shut down.
I received this news, by the way, as I sat in the parking lot of the spa, about to head in for a facial, manicure, and haircut (cashing in some birthday gift cards). All I wanted to do this morning was pretend, if only for a moment, that I was a normal, happy, woman with no cares in the world.
I am having a very difficult time right now, and I apologize if this blog is depressing. Feel free not to read. What is the most upsetting to me is that I am feeling a complete resentment toward God. All throughout the awful turn of events through the past 3 1/2 years, I have turned to Him, prayed for guidance, asked for understanding. And now I am just so mad that He has allowed this to happen. He has allowed me to get to the point where I am turning my back on Him. And that is not ok. If I can't turn to Him, who can I turn to?
Tomorrow is our Infertility Support Group at the Diocese. The poor priest and spiritual director who is hosting is going to be walking right into a lion's den! I am going to bombard him with questions... and I only hope the Holy Spirit is with that poor man. God has some 'splaining to do.
If we were to start all over again, fresh, with a new agency or private adoption, it would require money. Of which we have none. And I mean, no income. Sure I get $ here and there from Creighton follow-ups, but that pretty much pays for my monthly vitamins. DH is not paid a salary, and has not been given ANY payments in over 4 months.
I can't even describe how I feel right now. Infertility sucks. NO. DOUBT. ABOUT. IT. But somehow, this is so much worse. Maybe because it was not infertility that lead me to adoption. I have always wanted to adopt, and in college, me and my 2 BFFs sat down and wrote a list of 5 things we planned to accomplish with our lives. On my list was: "To adopt at least 1 child." On my list was NOT: "To have at least 1 biological child."
To have my womb sewn shut by God is an excruciating pain, but one that I was learning to live with. To have society, on the other hand, tell me, "You can not, shall not, will not ever be a mother" is more than I can bear. Every night in my prayers, I pray for healing, yes, but my words are for me and my husband to become parents in ANY WAY. I was so honestly ecstatic during the adoption process (before June), that we were finally going to become parents. I didn't need to mourn the loss of having biological children, as some of the agencies recommend you do, because pregnancy was never my ultimate goal. Motherhood was.
When this first happened, it occurred to me that maybe God intended for our first child to be from my womb. So I went headfirst into immune testing/treatment and discovered a diagnosis which will affect my fertility forever. My clotting factors. Proven by Doppler ultrasound, I have ZERO BLOODFLOW to the zone of implantation, even with 40 mgs of Lovenox streaming through my arteries. This means, I will never, CAN never, get pregnant and implant unless I am taking twice daily injections.
And that is not something that a) I can afford to do for another 20 years, or b) is healthy to do for another 20 years. At some point, yes, I will need to stop TTC. Unlike many other people, who may always have "the chance" of conceiving some day, I will not.
And now my only other road to motherhood has been shut down.
I received this news, by the way, as I sat in the parking lot of the spa, about to head in for a facial, manicure, and haircut (cashing in some birthday gift cards). All I wanted to do this morning was pretend, if only for a moment, that I was a normal, happy, woman with no cares in the world.
I am having a very difficult time right now, and I apologize if this blog is depressing. Feel free not to read. What is the most upsetting to me is that I am feeling a complete resentment toward God. All throughout the awful turn of events through the past 3 1/2 years, I have turned to Him, prayed for guidance, asked for understanding. And now I am just so mad that He has allowed this to happen. He has allowed me to get to the point where I am turning my back on Him. And that is not ok. If I can't turn to Him, who can I turn to?
Tomorrow is our Infertility Support Group at the Diocese. The poor priest and spiritual director who is hosting is going to be walking right into a lion's den! I am going to bombard him with questions... and I only hope the Holy Spirit is with that poor man. God has some 'splaining to do.
Tuesday, November 17, 2009
Some Scary Stuff and More Info on Food Testing
OK, I just got back from my sonography lab, and I'm freaking out.
While scanning transabdominal uterus and ovaries (with full bladders), 1 of the professors walked by as I was laying on the table (being a test patient) and says, "Is there something in her bladder?" Sure enough, it wasn't artifact, it was some kind of echogenic (giving off echoes) mass. All I kept thinking about was how my mentor recently told me he was scanning a woman's uterus and found bladder cancer purely by accident.
Luckily, it did not have the shape of a mass, so I wasn't really thinking "tumor." But I WAS thinking, "WTH?!?!?!" The sludge (as we'll call it) was gravity-dependent, so it moved when I switched positions, again confirming it was not a mass, lesion, tumor, etc. My professors were guessing it was blood, and asked if I had seen any blood in my urine. No. None.
I told them about my blood thinners (Lovenox). They're thinking maybe that is the cause. I already called and left a message with Dr Kwak to see what she thinks, and if this is a common side effect (or maybe means I need a lower dose?) I had to fess up on the message and tell her my hematologist refused to write the script for 40 mgs 2 x day, so I was taking 60 mgs 2 x day.
I am just SO FRUSTRATED right now. If it's not 1 thing, I swear, it's always always ALWAYS another with my body!! Every time I think I'm fixing something, another problem pops up. WTH???
St. Raphael, pray for me!
OK, and by popular demand, here is more info on the food sensitivity testing that I will be doing:
It's called the LEAP test: Lifestyle Eating and Performance. You can get more info by calling the main hotline at 1 888 NOW LEAP.
Now I'm worried that Dr Kwak's nurse will call me tomorrow and tell me to decrease my Lovenox to 40 mgs 2 x day. I know it sounds crazy, but I'd rather NOT risk a failed implantation over getting rid of some assymptomatic sludge in my bladder... kwim? Like, as long as it's not malignant or anything... I just don't want to mess with my dose RIGHT at the time I would be implanting (I'm 5dpo today). Of course, I won't put up a fight if they tell me that this is not a problem NOW but that it COULD become worse. Then I'll do whatever they want. I'm so torn!!
While scanning transabdominal uterus and ovaries (with full bladders), 1 of the professors walked by as I was laying on the table (being a test patient) and says, "Is there something in her bladder?" Sure enough, it wasn't artifact, it was some kind of echogenic (giving off echoes) mass. All I kept thinking about was how my mentor recently told me he was scanning a woman's uterus and found bladder cancer purely by accident.
Luckily, it did not have the shape of a mass, so I wasn't really thinking "tumor." But I WAS thinking, "WTH?!?!?!" The sludge (as we'll call it) was gravity-dependent, so it moved when I switched positions, again confirming it was not a mass, lesion, tumor, etc. My professors were guessing it was blood, and asked if I had seen any blood in my urine. No. None.
I told them about my blood thinners (Lovenox). They're thinking maybe that is the cause. I already called and left a message with Dr Kwak to see what she thinks, and if this is a common side effect (or maybe means I need a lower dose?) I had to fess up on the message and tell her my hematologist refused to write the script for 40 mgs 2 x day, so I was taking 60 mgs 2 x day.
I am just SO FRUSTRATED right now. If it's not 1 thing, I swear, it's always always ALWAYS another with my body!! Every time I think I'm fixing something, another problem pops up. WTH???
St. Raphael, pray for me!
OK, and by popular demand, here is more info on the food sensitivity testing that I will be doing:
It's called the LEAP test: Lifestyle Eating and Performance. You can get more info by calling the main hotline at 1 888 NOW LEAP.
Now I'm worried that Dr Kwak's nurse will call me tomorrow and tell me to decrease my Lovenox to 40 mgs 2 x day. I know it sounds crazy, but I'd rather NOT risk a failed implantation over getting rid of some assymptomatic sludge in my bladder... kwim? Like, as long as it's not malignant or anything... I just don't want to mess with my dose RIGHT at the time I would be implanting (I'm 5dpo today). Of course, I won't put up a fight if they tell me that this is not a problem NOW but that it COULD become worse. Then I'll do whatever they want. I'm so torn!!
Finally Bit the Bullet
It's not like I was avoiding getting the food sensitivity testing, but I mean geez, how long have I been talking about it now? Since July? Yeah, it was July, it was right after Dr. Boyle gave his talk at the AAFCP meeting.
I guess it wasn't on the top of my list of priorities because it would have required me to ship everything overseas to the United Kingdom. But last week at my Dr's appt (NaPro), I asked my Dr again if she thought I should still get it done. She said yes, that it would be interesting to see how diet is playing a role in all of this. We also talked about my less-than-perfectly-normal BM schedule (2-3 x week), and maybe in avoiding certain foods I can become more regular.
She said just recently she was in contact with a local dietician who works with the GI Dr at the local hospital, and that she was now running these tests which were almost identical to the Food Print in the UK. Great! I may actually be able to get at least part of it covered by insurance, then.
So I'll be going Thursday after work to get the blood work. The dietician also told me she will continue working with me to help me implement a diet plan that works well with my body's sensitivities, etc. after the test.
I hope it doesn't come back to say I have food sensitivity to Mallomars. That would be a travesty.
Yesterday I also finally spoke with the nurse from Dr Kwak's office and asked about my results (the ones that warranted my starting prednisone this cycle). She said everything was still great, except my NK Cells 50:1 killing activity was 18%. They want it below 15%. I asked about what could make it fluctuate (this is the 3rd time I've have my NK Cells tested and both times before they were well in range), and she said they fluctuate all the time, which is why they test them often during treatment. I'm actually really glad that I ended up getting the blood test on day 7 of my cycle, now, because if I had it on CD 3 as requested, maybe the results still would have been in normal range at the time. See- everything DOES happen for a reason!
(The 18% is not high enough for me to need IVIg, and I am so thrilled about that!)
I'm P+5 today, and again I have absolutely NO breast tenderness. I am so confused by this... why when I'm ON progesterone do I have no symptoms, and when I'm NOT on progesterone I have all the symptoms? (I am bloated and gassy, but I swear, almost every other TTC cycle I either get sore bbs right after ovulation or mid-luteal phase. Grrrrr...)
So far, so good with the prednisone. I have had a little bit of insomnia (waking up several times in the middle of the night) but not too bad. I haven't turned into a big, fat, hairy ape yet. Stay tuned...
I guess it wasn't on the top of my list of priorities because it would have required me to ship everything overseas to the United Kingdom. But last week at my Dr's appt (NaPro), I asked my Dr again if she thought I should still get it done. She said yes, that it would be interesting to see how diet is playing a role in all of this. We also talked about my less-than-perfectly-normal BM schedule (2-3 x week), and maybe in avoiding certain foods I can become more regular.
She said just recently she was in contact with a local dietician who works with the GI Dr at the local hospital, and that she was now running these tests which were almost identical to the Food Print in the UK. Great! I may actually be able to get at least part of it covered by insurance, then.
So I'll be going Thursday after work to get the blood work. The dietician also told me she will continue working with me to help me implement a diet plan that works well with my body's sensitivities, etc. after the test.
I hope it doesn't come back to say I have food sensitivity to Mallomars. That would be a travesty.
Yesterday I also finally spoke with the nurse from Dr Kwak's office and asked about my results (the ones that warranted my starting prednisone this cycle). She said everything was still great, except my NK Cells 50:1 killing activity was 18%. They want it below 15%. I asked about what could make it fluctuate (this is the 3rd time I've have my NK Cells tested and both times before they were well in range), and she said they fluctuate all the time, which is why they test them often during treatment. I'm actually really glad that I ended up getting the blood test on day 7 of my cycle, now, because if I had it on CD 3 as requested, maybe the results still would have been in normal range at the time. See- everything DOES happen for a reason!
(The 18% is not high enough for me to need IVIg, and I am so thrilled about that!)
I'm P+5 today, and again I have absolutely NO breast tenderness. I am so confused by this... why when I'm ON progesterone do I have no symptoms, and when I'm NOT on progesterone I have all the symptoms? (I am bloated and gassy, but I swear, almost every other TTC cycle I either get sore bbs right after ovulation or mid-luteal phase. Grrrrr...)
So far, so good with the prednisone. I have had a little bit of insomnia (waking up several times in the middle of the night) but not too bad. I haven't turned into a big, fat, hairy ape yet. Stay tuned...
Friday, November 13, 2009
Prednisone
So, after last cycle failed, I was on a mission to see what else I could do to up my chances. Here are the changes that were implemented:
Last cycle- 40 mgs of Lovenox 2 x day pre-Peak; 60 mgs of Lovenox 2 x day post-Peak
This cycle- 60 mgs of Lovenox 2 x day pre- and post-Peak
Last cycle- Vitamins/Supplements: Vit E, Vit D3, Vit B6, Neevo prenatal, Calcium Citrate, Cod Liver Oil, Omega 3s
This cycle- all same Vitamins, and add DHEA 5 mgs
Last cycle- Femara 25 mgs
This cycle- Femara 32.5 mgs (supposed to be 30, but the pharmacy gave me 13 pills instead of 12... sweet!)
So, I also wanted to see if Dr Kwak-Kim recommended prednisone. It seemed to me that the majority of her patients (whom I speak with on various message boards and online forums) are on prednisone and/or IVIg. At my first appt, she said I didn't need either at that time, but that she'd re-test and re-evaluate.
I had another NK cell and TH1:TH2 ratio test, along with a re-check of my PAI-1 levels drawn and sent to her lab on Monday. If prednisone was warranted, I would need to start taking it right after ovulation - which is NOW.
Well, the nurses called and left me a message this late afternoon, that Dr Kwak DOES want me to start prednisone 10 mgs 1 x day. They said, "Give us your pharmacy # so we can call it in." Only problem? They were closed when I called them back! And, of course, it's Friday evening- worst timing to need a new script!!!
So, in an act of desperation, I emailed my Dr. (I hate to do that on weekends, and take advantage of the relationship we have as Dr/patient, but also as employer/employee and friends.) Not 5 minutes later, she wrote back, "I'll call it in for you right now." Prednisone isn't even part of her NaPro protocol! This is not a med she normally prescribes at all!! She is so awesome!
So, DH is out now picking up my prednisone so I can start it tonight. The other great news is that I called the pharmacy to see if it would be ready, they said Yes, AND they already ran it through my insurance and it's covered... I only have to pay a few bucks (not the normal $10 or $35 co-pay). Ugh, thank goodness! I couldn't afford 1 more $35 per cycle med.
Now all weekend I'll just be wondering what my test results were... if my NK cells all of a sudden flared up, or if my TH1:TH2 ratio changed, or perhaps everything was still fine and Dr Kwak just wanted to try this? (I'm thinking the NK cells couldn't have been TOO bad or she'd have recommended IVIg.)
If anyone else out there is on prednisone for immune-related IF, or has a prednisone success story, I'd love to hear about it!
Last cycle- 40 mgs of Lovenox 2 x day pre-Peak; 60 mgs of Lovenox 2 x day post-Peak
This cycle- 60 mgs of Lovenox 2 x day pre- and post-Peak
Last cycle- Vitamins/Supplements: Vit E, Vit D3, Vit B6, Neevo prenatal, Calcium Citrate, Cod Liver Oil, Omega 3s
This cycle- all same Vitamins, and add DHEA 5 mgs
Last cycle- Femara 25 mgs
This cycle- Femara 32.5 mgs (supposed to be 30, but the pharmacy gave me 13 pills instead of 12... sweet!)
So, I also wanted to see if Dr Kwak-Kim recommended prednisone. It seemed to me that the majority of her patients (whom I speak with on various message boards and online forums) are on prednisone and/or IVIg. At my first appt, she said I didn't need either at that time, but that she'd re-test and re-evaluate.
I had another NK cell and TH1:TH2 ratio test, along with a re-check of my PAI-1 levels drawn and sent to her lab on Monday. If prednisone was warranted, I would need to start taking it right after ovulation - which is NOW.
Well, the nurses called and left me a message this late afternoon, that Dr Kwak DOES want me to start prednisone 10 mgs 1 x day. They said, "Give us your pharmacy # so we can call it in." Only problem? They were closed when I called them back! And, of course, it's Friday evening- worst timing to need a new script!!!
So, in an act of desperation, I emailed my Dr. (I hate to do that on weekends, and take advantage of the relationship we have as Dr/patient, but also as employer/employee and friends.) Not 5 minutes later, she wrote back, "I'll call it in for you right now." Prednisone isn't even part of her NaPro protocol! This is not a med she normally prescribes at all!! She is so awesome!
So, DH is out now picking up my prednisone so I can start it tonight. The other great news is that I called the pharmacy to see if it would be ready, they said Yes, AND they already ran it through my insurance and it's covered... I only have to pay a few bucks (not the normal $10 or $35 co-pay). Ugh, thank goodness! I couldn't afford 1 more $35 per cycle med.
Now all weekend I'll just be wondering what my test results were... if my NK cells all of a sudden flared up, or if my TH1:TH2 ratio changed, or perhaps everything was still fine and Dr Kwak just wanted to try this? (I'm thinking the NK cells couldn't have been TOO bad or she'd have recommended IVIg.)
If anyone else out there is on prednisone for immune-related IF, or has a prednisone success story, I'd love to hear about it!
Friday, November 6, 2009
"God Has Healing in Store for You, So Take Courage!" Tobit 5:10
Thanks to Sew, I was able to enter into a drawing for a patron Saint for 2010, which another Catholic blogger has so generously offered to anyone who asks.
What she does is she picks a name out of a bag at random, after first praying for the person who has made the request. Often she knows little to nothing about the person, but has attested to the fact that the Saints chosen seem to be intended for that person specifically.
So, I made my request last night, and today I went to check who my Saint is, fully expecting to be able to force a connection if one wasn't immediately obvious. (For example, if it wasn't St. Gianna, St Gerard, St. Anne, etc... I was sure I could somehow make a connection between the Saint and my infertility- like, St. Monica- prayed for many many years for her son's conversion of heart, and despite not getting an answer, she never gave up. I could definitely connect that to my incessant prayers for a family.)
But when I saw my Saint, I didn't have an immediate "A-Ha!" moment.
I got the Archangel Raphael.
Of whom I no little about, other than that he is an Archangel. (And this part did make me chuckle, thinking, "Yup, my case is gonna require a celestial being, no human can handle it!")
So off I went to go google the Archangel Raphael.
I learned about the story of Raphael as told in the book of Tobit. That he appeared disguised as a human to help Tobias, who was betrothed to Sarah. He came to answer Tobias' prayers, who was fearful for his life, since all 7 of Sarah's previous husbands had died. And he also came to heal Sarah of whatever demons were inside of her, causing her to become a widow 7 times over, each time on the night of her wedding. (When I read this, I thought, "Oh, that wasn't demons... she had CT!!" And then, of course, my patron Saint choice made complete sense, hahahaha!!)
At the end of the little blurp about St Raphael, it said, "Raphael comes from the Hebrew for 'God Heals.' "
OK. Now it was starting to hit home.
For about the past year, I have been struggling with my diagnosis of CT, and my ongoing TEBB (tail-end brown bleeding) which was in fact the symptom that lead Dr Hilgers to suspect I had it. After going through 10 days of IV antiobiotic drips, transcervical uterine antibiotic washes, and 2 months of strong orals, I then completed about 7 cycles of cyclical Zithromax, and repeat uterine washes for 7 days.
My brown bleeding kept coming back.
As much hope as I have experienced in finding the blood clotting diagnosis, and then finding Dr Kwak-Kim and immune treatments, underneath it all the belief that has been coursing through my veins has been, "But I know I cannot get pregnant, because I still have, and will always have, CT." My case was stronger than most, too, because as Dr Toth believes, I did no retract this from intercourse, but have had it since birth.
This underlying feeling I've had is really a distrust of God. When our adoption process fell through, I was mostly upset because it didn't seem to me that God was closing that door because He wanted us to concentrate more on the TTC... I just knew in my mind that it was impossible for me to be healed physically. And this made the failed adoption process even more traumatic.
But FJIEJ has continued to tell me (since we went through treatments with Dr Toth at the same time, she definately "gets" my feelings about CT), that I need to believe that God has allowed me healing of it. I cannot let myself get stuck into the signs and symptoms of its return. God can heal ALL things. And that's what I need to put my trust in.
Because Raphael means "God Heals," he is also the patron Saint of healers (physicians, nurses), the blind (which I believe myself to be, spiritually), and travelers, which, if you want to stretch that you could also say I've been a traveler on this whole journey through infertility. But really all I care about is that the Archangel chosen for me has that very strong connection to healing... and its a healing that comes directly from God... a healing I need in every sense of the word.
It gets better.
The site mentioned that there have been many miracles attributed to Raphael, at the various shrines devoted to him throughout the world. So, I googled shrines to St Raphael and found this site, which mentions a Father Joe Whelan, who heads up the Saint Raphael and Tobias Healing Ministry. The name of the priest immediately looked familiar... but when I saw that he sent out healing oils as part of their ministry... well, that's when the "A-Ha!" moment struck me.
I jumped out of my chair, took 3 steps over to the countertop nearby... and picked up a bottle of "Archangel St. Raphael & Tobias" Holy Healing Oil, Prepared and Blessed by Fr. Joe Whelan, MS.
How did I come to have this exact oil on my counter, and why didn't I remember that I had Raphael oil when I first saw the name of my patron Saint, you may wonder?
Well, the latter question can be answered simply. I am a forgetful person :) Plus, when I first received the oil, I only knew that St. Raphael was an Archangel, and didn't know anything about Tobias, so it meant little to me then (other than the fact that it was healing oil).
The oil was at the bottom of a bag of things my mom had given me, which belonged to my grandmother. In the bag were some postcards and letters I had sent my grandmother when I was studying abroad in Italy. Other items included some of her favorite religious movies (on VHS), and town newspaper clippings she had saved of me from when I was in high school. The oil was at the bottom of the bag, along with a couple of religious ornaments.
At the time, I thought the oil was "fitting" for my grandmother to have, since a) she had cancer, and b) the contents of the bottle are "olive oil and rose petals." How apropos for an Italian woman named Rose.
But as soon as I saw the website, and made the connection to my patron Saint, I knew this was JUST PERFECT. A healing Saint. A Saint whose oil I have inherited from my grandmother whom I loved so much, and who promised to pray for me FROM HEAVEN. She is, indeed, praying. And she knew I was meant to find St. Raphael. I am certain that this is a little gift from her.
I am still in awe over this. Thanks to "Where Angels Blog," I now have an Archangel on my side, whom I have begun to learn more about and who will be interceding for my healing.
I will close as I opened, with these powerful words from Saint Raphael himself, in the book of Tobit:
"God has healing in store for you, so take courage!"
What she does is she picks a name out of a bag at random, after first praying for the person who has made the request. Often she knows little to nothing about the person, but has attested to the fact that the Saints chosen seem to be intended for that person specifically.
So, I made my request last night, and today I went to check who my Saint is, fully expecting to be able to force a connection if one wasn't immediately obvious. (For example, if it wasn't St. Gianna, St Gerard, St. Anne, etc... I was sure I could somehow make a connection between the Saint and my infertility- like, St. Monica- prayed for many many years for her son's conversion of heart, and despite not getting an answer, she never gave up. I could definitely connect that to my incessant prayers for a family.)
But when I saw my Saint, I didn't have an immediate "A-Ha!" moment.
I got the Archangel Raphael.
Of whom I no little about, other than that he is an Archangel. (And this part did make me chuckle, thinking, "Yup, my case is gonna require a celestial being, no human can handle it!")
So off I went to go google the Archangel Raphael.
I learned about the story of Raphael as told in the book of Tobit. That he appeared disguised as a human to help Tobias, who was betrothed to Sarah. He came to answer Tobias' prayers, who was fearful for his life, since all 7 of Sarah's previous husbands had died. And he also came to heal Sarah of whatever demons were inside of her, causing her to become a widow 7 times over, each time on the night of her wedding. (When I read this, I thought, "Oh, that wasn't demons... she had CT!!" And then, of course, my patron Saint choice made complete sense, hahahaha!!)
At the end of the little blurp about St Raphael, it said, "Raphael comes from the Hebrew for 'God Heals.' "
OK. Now it was starting to hit home.
For about the past year, I have been struggling with my diagnosis of CT, and my ongoing TEBB (tail-end brown bleeding) which was in fact the symptom that lead Dr Hilgers to suspect I had it. After going through 10 days of IV antiobiotic drips, transcervical uterine antibiotic washes, and 2 months of strong orals, I then completed about 7 cycles of cyclical Zithromax, and repeat uterine washes for 7 days.
My brown bleeding kept coming back.
As much hope as I have experienced in finding the blood clotting diagnosis, and then finding Dr Kwak-Kim and immune treatments, underneath it all the belief that has been coursing through my veins has been, "But I know I cannot get pregnant, because I still have, and will always have, CT." My case was stronger than most, too, because as Dr Toth believes, I did no retract this from intercourse, but have had it since birth.
This underlying feeling I've had is really a distrust of God. When our adoption process fell through, I was mostly upset because it didn't seem to me that God was closing that door because He wanted us to concentrate more on the TTC... I just knew in my mind that it was impossible for me to be healed physically. And this made the failed adoption process even more traumatic.
But FJIEJ has continued to tell me (since we went through treatments with Dr Toth at the same time, she definately "gets" my feelings about CT), that I need to believe that God has allowed me healing of it. I cannot let myself get stuck into the signs and symptoms of its return. God can heal ALL things. And that's what I need to put my trust in.
Because Raphael means "God Heals," he is also the patron Saint of healers (physicians, nurses), the blind (which I believe myself to be, spiritually), and travelers, which, if you want to stretch that you could also say I've been a traveler on this whole journey through infertility. But really all I care about is that the Archangel chosen for me has that very strong connection to healing... and its a healing that comes directly from God... a healing I need in every sense of the word.
It gets better.
The site mentioned that there have been many miracles attributed to Raphael, at the various shrines devoted to him throughout the world. So, I googled shrines to St Raphael and found this site, which mentions a Father Joe Whelan, who heads up the Saint Raphael and Tobias Healing Ministry. The name of the priest immediately looked familiar... but when I saw that he sent out healing oils as part of their ministry... well, that's when the "A-Ha!" moment struck me.
I jumped out of my chair, took 3 steps over to the countertop nearby... and picked up a bottle of "Archangel St. Raphael & Tobias" Holy Healing Oil, Prepared and Blessed by Fr. Joe Whelan, MS.
How did I come to have this exact oil on my counter, and why didn't I remember that I had Raphael oil when I first saw the name of my patron Saint, you may wonder?
Well, the latter question can be answered simply. I am a forgetful person :) Plus, when I first received the oil, I only knew that St. Raphael was an Archangel, and didn't know anything about Tobias, so it meant little to me then (other than the fact that it was healing oil).
The oil was at the bottom of a bag of things my mom had given me, which belonged to my grandmother. In the bag were some postcards and letters I had sent my grandmother when I was studying abroad in Italy. Other items included some of her favorite religious movies (on VHS), and town newspaper clippings she had saved of me from when I was in high school. The oil was at the bottom of the bag, along with a couple of religious ornaments.
At the time, I thought the oil was "fitting" for my grandmother to have, since a) she had cancer, and b) the contents of the bottle are "olive oil and rose petals." How apropos for an Italian woman named Rose.
But as soon as I saw the website, and made the connection to my patron Saint, I knew this was JUST PERFECT. A healing Saint. A Saint whose oil I have inherited from my grandmother whom I loved so much, and who promised to pray for me FROM HEAVEN. She is, indeed, praying. And she knew I was meant to find St. Raphael. I am certain that this is a little gift from her.
I am still in awe over this. Thanks to "Where Angels Blog," I now have an Archangel on my side, whom I have begun to learn more about and who will be interceding for my healing.
I will close as I opened, with these powerful words from Saint Raphael himself, in the book of Tobit:
"God has healing in store for you, so take courage!"
Sunday, November 1, 2009
Catholic Fertility Support Group, NJ
We have a spiritual director for our November meeting of the Catholic Fertility Support Group!
I've been trying to get one for the group for months now, and I am so excited!
This is directly from the insert color-ad from the Diocesan newspaper:
"Presentation by Fr. John Fell: Fr. John Fell has been a priest of the Metuchen Diocese for 21 years. He is currently the pastor of Our Lady of Perpetual Help Parish in Bernardsville. Father Fell has a doctorate in moral theology from the Pontifical Lateran University in Rome. He serves on the Board of Trustees and Ethics Committee of St. Peter's Medical Center in New Brunswick and teaches part-time at the College of St. Elizabeth in Convent Station."
Fr. Fell will be giving a brief presentation on the Church's teachings about fertility treatments, etc. But even more exciting, he will be there to help us work through some of the more spiritually-based questions underlying Catholic infertility. All the "whys," how to make the most of this cross, and how to find peace in God's will for our lives.
Please join us!! It promises to be an enlightening experience for all.
Saturday, November 21st, 2009
10:00am - 11:30am
St. John Neumann Center
146 Metlars Lane
Piscataway, NJ
I've been trying to get one for the group for months now, and I am so excited!
This is directly from the insert color-ad from the Diocesan newspaper:
"Presentation by Fr. John Fell: Fr. John Fell has been a priest of the Metuchen Diocese for 21 years. He is currently the pastor of Our Lady of Perpetual Help Parish in Bernardsville. Father Fell has a doctorate in moral theology from the Pontifical Lateran University in Rome. He serves on the Board of Trustees and Ethics Committee of St. Peter's Medical Center in New Brunswick and teaches part-time at the College of St. Elizabeth in Convent Station."
Fr. Fell will be giving a brief presentation on the Church's teachings about fertility treatments, etc. But even more exciting, he will be there to help us work through some of the more spiritually-based questions underlying Catholic infertility. All the "whys," how to make the most of this cross, and how to find peace in God's will for our lives.
Please join us!! It promises to be an enlightening experience for all.
Saturday, November 21st, 2009
10:00am - 11:30am
St. John Neumann Center
146 Metlars Lane
Piscataway, NJ
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