But it sure feels like that on CD1. :*(
On the bright side, I'll get to spend time with TCIE for my ultrasound series this cycle. My baseline ultrasound is on Monday. :)
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Wednesday, January 11, 2012
Monday, December 12, 2011
Goodbye PMS, hello desperation
I didn’t have PMS this cycle!! Praise God!! DH thinks I’m a completely different person. The naltrexone (32 mg/day) not only got rid of the ugly mood symptoms I used to have consistently post-peak (irritability, anger, depression, etc.) but it actually made my mood better than a normal non-PMS day. It’s like a weight has been lifted, and I feel free to be happy. I think I’m actually happier and more perky than usual. This is the part that DH is still getting used to. (He tends to be on the serious side.) :)
At least with PMS he knew exactly what to expect. I would feel my mood turn sour and tell him I’m PMSing. He would leave me alone. Sometimes giving me extra compliments or hugs helped defuse my short fuse but often it was best if we just sat in different rooms. (Sounds not so healthy for marriage, I know.) But DH reassured me every month that he was not taking it personally, and he knew that he didn’t do anything wrong. We learned very quickly that nothing important could be discussed on my PMS days, especially anything where we might disagree. I was not capable of much rational thought those days; I was pretty much pure (negative) emotion. But this cycle that was totally gone. This is seriously amazing.
DH says this isn’t real; this is just polkadot on drugs. Hahahahahaha
It has me wondering though: Is this my true normal (healthy) state that naltrexone has restored? Were my endorphins so deficient before which caused the PMS and now they are back to normal levels?
It took me a while to get up to the 32 mg dose. PPVI had me start at 4 mg/day, and every 10 days the dose doubled. After I survived 10 days of 32 mg/day (divided up into four doses throughout the day), I could start taking the whole dose at night. The final dose will now be 50 mg at night.
Since I “graduated” from 32 mg (compounded) to 50 mg, I can now get the prescription filled at a local, non-compounding pharmacy. Apparently 50 mg is a typical dose for someone being treated for alcohol or opioid addictions, which is why normal pharmacies carry it. (Did you know that’s what the rest of the world uses it for outside of NaPro? I had to convince my doctor during my health scare in October that I did not have an addiction to drugs… haha) The nurse from PPVI said I can either take 50 mg or 25 mg (by cutting the pill in half). Since my mood has beentoo so good, I think I’ll try taking 25 mg daily to see if that’s enough to keep PMS at bay. I don’t mind being extra smiley all the time, but DH is a little weary of it, so maybe 25 mg will be the perfect dose.
Months ago I had called around town to find a pharmacy that carries lactose-free naltrexone. I found one pharmacy that had it. When I called them on Friday afternoon to see if my new prescription was ready, they said they didn’t have any in stock and couldn’t order it until Monday. Boo. I'm not sure why they couldn't tell me that in one of the previous three times I called them last week... :P
Unfortunately I ran out of naltrexone, and it was two days before my cycle ended… Very poor timing. I don’t know if it was naltrexone withdrawal or just normal plummeting hormone levels that come with a new cycle, but I cried uncontrollably on and off all day for two days—on both the day before CD1 and CD1. It hasn’t been that bad in a long time. When DH tried to comfort me, my tears soaked his shirt so much he had to change it. :( I knew CD1 was coming the day before it happened because my temperature dropped, so that was part of the reason for tears. (I still have to monitor my temperature occasionally while on T3, and I know when my temperature drops, AF will arrive 24 hours later. Long ago before I met DH I charted sympto-thermal for my own knowledge.) I hope I’m more stable this cycle...
Because of the arrival of AF, Mass for Gaudete Sunday wasn’t the joyful occasion it’s supposed to be. Do you know how many times words like “brokenhearted” or “sorrow(ful)” were mentioned during Mass? At least six times at our parish. I know because I cried after hearing each one because it reminded me of our IF. With all the exhortations to rejoice, I tried but I told God I could not. Instead I told Him this cross is crushing me. Prayer Buddy, I offered it all up for you.
I don’t know whether to laugh or cry in admitting this. DH and I went out Sunday afternoon to finish Christmas shopping. I saw a woman holding a baby. I had the urge to take the baby. Bad, polkadot. Bad idea. I know I’m not the first IF girl with this thought. Maybe the second, but definitely not the first! It kind of shocked me to have that thought. It happened again while we were out. Twice in one day. Yikes. I promise I will never take anyone’s baby, but wow, did I feel desperate!
I’m kind of feeling like Rachel in the Old Testament when she says, “Give me children or I shall die!” (Genesis 30:1) I understand the desperation. I hate feeling this desperate, but it is what it is right now.
*sigh*
God, will you send us a baby soon? Please? Thanks in advance. :)
At least with PMS he knew exactly what to expect. I would feel my mood turn sour and tell him I’m PMSing. He would leave me alone. Sometimes giving me extra compliments or hugs helped defuse my short fuse but often it was best if we just sat in different rooms. (Sounds not so healthy for marriage, I know.) But DH reassured me every month that he was not taking it personally, and he knew that he didn’t do anything wrong. We learned very quickly that nothing important could be discussed on my PMS days, especially anything where we might disagree. I was not capable of much rational thought those days; I was pretty much pure (negative) emotion. But this cycle that was totally gone. This is seriously amazing.
DH says this isn’t real; this is just polkadot on drugs. Hahahahahaha
It has me wondering though: Is this my true normal (healthy) state that naltrexone has restored? Were my endorphins so deficient before which caused the PMS and now they are back to normal levels?
It took me a while to get up to the 32 mg dose. PPVI had me start at 4 mg/day, and every 10 days the dose doubled. After I survived 10 days of 32 mg/day (divided up into four doses throughout the day), I could start taking the whole dose at night. The final dose will now be 50 mg at night.
Since I “graduated” from 32 mg (compounded) to 50 mg, I can now get the prescription filled at a local, non-compounding pharmacy. Apparently 50 mg is a typical dose for someone being treated for alcohol or opioid addictions, which is why normal pharmacies carry it. (Did you know that’s what the rest of the world uses it for outside of NaPro? I had to convince my doctor during my health scare in October that I did not have an addiction to drugs… haha) The nurse from PPVI said I can either take 50 mg or 25 mg (by cutting the pill in half). Since my mood has been
Months ago I had called around town to find a pharmacy that carries lactose-free naltrexone. I found one pharmacy that had it. When I called them on Friday afternoon to see if my new prescription was ready, they said they didn’t have any in stock and couldn’t order it until Monday. Boo. I'm not sure why they couldn't tell me that in one of the previous three times I called them last week... :P
Unfortunately I ran out of naltrexone, and it was two days before my cycle ended… Very poor timing. I don’t know if it was naltrexone withdrawal or just normal plummeting hormone levels that come with a new cycle, but I cried uncontrollably on and off all day for two days—on both the day before CD1 and CD1. It hasn’t been that bad in a long time. When DH tried to comfort me, my tears soaked his shirt so much he had to change it. :( I knew CD1 was coming the day before it happened because my temperature dropped, so that was part of the reason for tears. (I still have to monitor my temperature occasionally while on T3, and I know when my temperature drops, AF will arrive 24 hours later. Long ago before I met DH I charted sympto-thermal for my own knowledge.) I hope I’m more stable this cycle...
Because of the arrival of AF, Mass for Gaudete Sunday wasn’t the joyful occasion it’s supposed to be. Do you know how many times words like “brokenhearted” or “sorrow(ful)” were mentioned during Mass? At least six times at our parish. I know because I cried after hearing each one because it reminded me of our IF. With all the exhortations to rejoice, I tried but I told God I could not. Instead I told Him this cross is crushing me. Prayer Buddy, I offered it all up for you.
I don’t know whether to laugh or cry in admitting this. DH and I went out Sunday afternoon to finish Christmas shopping. I saw a woman holding a baby. I had the urge to take the baby. Bad, polkadot. Bad idea. I know I’m not the first IF girl with this thought. Maybe the second, but definitely not the first! It kind of shocked me to have that thought. It happened again while we were out. Twice in one day. Yikes. I promise I will never take anyone’s baby, but wow, did I feel desperate!
I’m kind of feeling like Rachel in the Old Testament when she says, “Give me children or I shall die!” (Genesis 30:1) I understand the desperation. I hate feeling this desperate, but it is what it is right now.
*sigh*
God, will you send us a baby soon? Please? Thanks in advance. :)
Thursday, December 8, 2011
On grief
Today is our two-year anniversary of living with IF. On 12/8/09, CD1 arrived marking the end of six failed TTC cycles (with fertility-focused intercourse). I’m sure I was a sobbing mess at Mass for the Solemnity of the Immaculate Conception that night, especially during the reading from Luke about the Annunciation. Not that Bible passages normally pour salt in a wound, but I think that night hearing about someone else (even the pure Virgin Mary…) conceiving a child (even the child Jesus…) would have been a painful reminder for me of our new undesired state. The reading does contain the beautiful and comforting words “for nothing will be impossible for God” in reference to Elizabeth’s miraculous pregnancy, but I’m not sure that was much consolation for me that night.
It’s been a long, hard two years. Really I should say two and half years that we've been TTC because the sorrow and pain didn’t just appear suddenly on 12/8/09. Each of those cycles before we were labeled as IF added tears and heartache little by little so that by the time we fit the definition of IF, we were grieving.
Grief of this magnitude was new to me. I had mourned the loss of beloved grandparents in the past, but the deep sorrow that followed their deaths didn’t last very long. I had known both clients and friends who were struggling with IF, but I never imagined the depth of pain that they experienced until I experienced it firsthand. If I had been a better FCP intern, I would have read one of the books they recommended on IF so I could sympathize with my IF clients better…but I didn’t. With each new CD1 I mourned the loss of what could have been but never was and then tried to pick myself to try again in the new cycle. Each new CD1 re-opened the emotional wound that had never completely healed in the previous month. My dreams of having a large family (or even conceiving one child) died a little each month.
Without realizing it, I started going through the first 4 of the 5 stages of grief:
1. Denial: This isn't happening to me... I can't be infertile...
2. Anger: This is so unfair! Why does everyone else have no problems conceiving?!? Grrr...
3. Bargaining: I would do anything to have a child. Maybe if I promised to be more holy...
4. Depression: The sadness is overwhelming. I feel so empty and alone.
5. Acceptance: It's going to be okay whether we have a child or not. We can trust God.
I was stuck in denial for a long time. It actually made me postpone starting NaPro for a little while because I was convinced we just needed to try another cycle or two. Seeking help from NaPro meant that I was admitting we had a problem, which I did not want to do. Once I started a new treatment (HCG was first), I refused to add another, thinking that all we needed was the current treatment. I was in complete denial for months that I would ever need surgery. No, not me. I don’t need surgery. (Looking back I laugh a little, but at the time I completely ignored all the stats I knew about rates of endo among IF women.) I thought I would be different from all the IF clients I had sent to a NaPro surgeon.
Anger was more subtle because it seemed to be provoked by specific situations where (I assumed) any reasonable person would respond in the same way. Usually it would rear its ugly head when someone announced a pregnancy. I remember clearly the day when I learned of my now sister-in-law’s unexpected pregnancy. The anger was intense, but I thought it was a natural response and didn’t connect it to grief. (I think I was in denial about my anger!)
Once denial faded a little, bargaining took over. All of a sudden I was ready to do almost anything to become pregnant. Surgery? Yes, please. ASAP. More supplements and prescriptions? Bring ‘em on! I think it filtered into my prayer life too as I found myself making deals with God. God, if you bless us with a pregnancy, I will __________.
Depression was most obvious and consistent from CD1-CD3 of each new cycle. But I would find myself slipping into it at completely random times during the cycle also. Out of the blue, maybe at work, maybe while driving, I would be overcome with a wave of incredible sadness, the kind that feels like it will never end and is worse than anything I had ever felt before. Even though the pain was profound, I knew God was close by my side—whether I could feel His presence or not (and some days I could not)—which brought me comfort. On the days when trying to offer up the sorrow was too hard or it felt like it wasn’t helping, I would stare at a crucifix and think, “If such a great good can come from something so horrible as Jesus dying on the cross, surely there will be at least some good that will come from all this suffering.” During the first year of IF, I thought I knew what depression was. I probably did. But in the cycles following my surgery (Feb. 2011), the depression I experienced was magnified. It literally felt twice as painful, twice as deep as the depression episodes I had before surgery. I had so hoped that surgery would be the final answer for fixing our IF. I knew many people who conceived in the months shortly after their surgeries. I thought that surely within six cycles, we would be pregnant. We’re currently in the middle of the eighth cycle post-surgery. It’s like we’re infertile all over again.
Acceptance has been slow in coming. Sometimes it brings a great peace, but it doesn’t always last very long. On one such day, I told DH confidently, “It’s okay if we can’t have kids.” When I said it, I meant it 100%. The next day DH asked me if I still felt the same, and I said maybe 50%. This one is the hardest spiritual battle for me—trying to reconcile my desires for children with whatever God’s will is for us. I want to get to the place where I can say, “Thy will be done,” and accept it if that doesn’t include children. Sometimes a more honest prayer is: “God, help me to want to want your will to be done.”
From the little I’ve read on the subject of grief, people tend to progress through the five stages linearly or circularly (see my lovely illustrations here).
Sometimes you can revert back to a prior stage you thought you moved past. Even though I’ve pretty much described a linear progression in my experience here, it’s mostly a broad overview from memory. In reality, I think a more accurate diagram of the five stages would be this:
Notice all the bouncing around among the stages... This picture might represent the span of one cycle, or on my more crazy days, it could all happen in a single 24-hour period. ;)
All I have to say is thank God for a wonderful, supportive DH who puts up with me on my emotional roller coaster! And thank God for all of you and your prayers. Knowing that I'm not the only one going through this is a huge blessing! Your encouragement and empathy means the world to me. :)
It’s been a long, hard two years. Really I should say two and half years that we've been TTC because the sorrow and pain didn’t just appear suddenly on 12/8/09. Each of those cycles before we were labeled as IF added tears and heartache little by little so that by the time we fit the definition of IF, we were grieving.
Grief of this magnitude was new to me. I had mourned the loss of beloved grandparents in the past, but the deep sorrow that followed their deaths didn’t last very long. I had known both clients and friends who were struggling with IF, but I never imagined the depth of pain that they experienced until I experienced it firsthand. If I had been a better FCP intern, I would have read one of the books they recommended on IF so I could sympathize with my IF clients better…but I didn’t. With each new CD1 I mourned the loss of what could have been but never was and then tried to pick myself to try again in the new cycle. Each new CD1 re-opened the emotional wound that had never completely healed in the previous month. My dreams of having a large family (or even conceiving one child) died a little each month.
Without realizing it, I started going through the first 4 of the 5 stages of grief:
1. Denial: This isn't happening to me... I can't be infertile...
2. Anger: This is so unfair! Why does everyone else have no problems conceiving?!? Grrr...
3. Bargaining: I would do anything to have a child. Maybe if I promised to be more holy...
4. Depression: The sadness is overwhelming. I feel so empty and alone.
5. Acceptance: It's going to be okay whether we have a child or not. We can trust God.
I was stuck in denial for a long time. It actually made me postpone starting NaPro for a little while because I was convinced we just needed to try another cycle or two. Seeking help from NaPro meant that I was admitting we had a problem, which I did not want to do. Once I started a new treatment (HCG was first), I refused to add another, thinking that all we needed was the current treatment. I was in complete denial for months that I would ever need surgery. No, not me. I don’t need surgery. (Looking back I laugh a little, but at the time I completely ignored all the stats I knew about rates of endo among IF women.) I thought I would be different from all the IF clients I had sent to a NaPro surgeon.
Anger was more subtle because it seemed to be provoked by specific situations where (I assumed) any reasonable person would respond in the same way. Usually it would rear its ugly head when someone announced a pregnancy. I remember clearly the day when I learned of my now sister-in-law’s unexpected pregnancy. The anger was intense, but I thought it was a natural response and didn’t connect it to grief. (I think I was in denial about my anger!)
Once denial faded a little, bargaining took over. All of a sudden I was ready to do almost anything to become pregnant. Surgery? Yes, please. ASAP. More supplements and prescriptions? Bring ‘em on! I think it filtered into my prayer life too as I found myself making deals with God. God, if you bless us with a pregnancy, I will __________.
Depression was most obvious and consistent from CD1-CD3 of each new cycle. But I would find myself slipping into it at completely random times during the cycle also. Out of the blue, maybe at work, maybe while driving, I would be overcome with a wave of incredible sadness, the kind that feels like it will never end and is worse than anything I had ever felt before. Even though the pain was profound, I knew God was close by my side—whether I could feel His presence or not (and some days I could not)—which brought me comfort. On the days when trying to offer up the sorrow was too hard or it felt like it wasn’t helping, I would stare at a crucifix and think, “If such a great good can come from something so horrible as Jesus dying on the cross, surely there will be at least some good that will come from all this suffering.” During the first year of IF, I thought I knew what depression was. I probably did. But in the cycles following my surgery (Feb. 2011), the depression I experienced was magnified. It literally felt twice as painful, twice as deep as the depression episodes I had before surgery. I had so hoped that surgery would be the final answer for fixing our IF. I knew many people who conceived in the months shortly after their surgeries. I thought that surely within six cycles, we would be pregnant. We’re currently in the middle of the eighth cycle post-surgery. It’s like we’re infertile all over again.
Acceptance has been slow in coming. Sometimes it brings a great peace, but it doesn’t always last very long. On one such day, I told DH confidently, “It’s okay if we can’t have kids.” When I said it, I meant it 100%. The next day DH asked me if I still felt the same, and I said maybe 50%. This one is the hardest spiritual battle for me—trying to reconcile my desires for children with whatever God’s will is for us. I want to get to the place where I can say, “Thy will be done,” and accept it if that doesn’t include children. Sometimes a more honest prayer is: “God, help me to want to want your will to be done.”
From the little I’ve read on the subject of grief, people tend to progress through the five stages linearly or circularly (see my lovely illustrations here).
Sometimes you can revert back to a prior stage you thought you moved past. Even though I’ve pretty much described a linear progression in my experience here, it’s mostly a broad overview from memory. In reality, I think a more accurate diagram of the five stages would be this:
Notice all the bouncing around among the stages... This picture might represent the span of one cycle, or on my more crazy days, it could all happen in a single 24-hour period. ;)
All I have to say is thank God for a wonderful, supportive DH who puts up with me on my emotional roller coaster! And thank God for all of you and your prayers. Knowing that I'm not the only one going through this is a huge blessing! Your encouragement and empathy means the world to me. :)
Wednesday, December 7, 2011
PPVI news: plans for expansion
I know this is a little late, but I wanted to share this news just in case you hadn't heard about it...
The PPVI Institute announced that it is planning to expand their facility. Exciting, right!?! The property next door to the current PPVI building is up for sale, and PPVI is trying to purchase it. You can read the proposal in this pdf. They want to build an addition onto the Institute, which will enable them to have 10 physicians. Ten NaPro physicians!!! Can you imagine that??? Think about what that would do to the waiting times that patients currently have to endure to see one of their surgeons! Right now they have three physicians on staff. From the pictures, it looks like they're going to double the size of the building.
So now they're trying to raise money for the loan to buy the adjacent land which apparently is very time-sensitive. They put out an urgent request recently with the (now past) deadline of November 21st. I couldn't find on their website or Facebook page if they raised enough money for the land loan already. We're on the Institute's mailing list, and we didn't receive a (paper) letter about this request until after the deadline, so maybe the deadline was more of a suggestion to show how urgent this is? You can read the letter from Dr. Hilgers here. If you have the means, you can donate online at the PPVI website and specify that your donation is for the capital campaign. The letter we received asked for a donation of $750 to purchase "one unit" of the new building.
If you can't support the Institute financially, please keep them and this effort in your prayers. I would love to see these plans become a reality. Think of all the couples that could be helped by this expansion! Let me say it again: ten NaPro physicians! How amazing would that be!
Here's a 13-minute video that details the background of NaPro and the Institute. There are some great pictures of Dr. Hilgers from the 70s or 80s in the first 3.5 minutes. :)
The PPVI Institute announced that it is planning to expand their facility. Exciting, right!?! The property next door to the current PPVI building is up for sale, and PPVI is trying to purchase it. You can read the proposal in this pdf. They want to build an addition onto the Institute, which will enable them to have 10 physicians. Ten NaPro physicians!!! Can you imagine that??? Think about what that would do to the waiting times that patients currently have to endure to see one of their surgeons! Right now they have three physicians on staff. From the pictures, it looks like they're going to double the size of the building.
So now they're trying to raise money for the loan to buy the adjacent land which apparently is very time-sensitive. They put out an urgent request recently with the (now past) deadline of November 21st. I couldn't find on their website or Facebook page if they raised enough money for the land loan already. We're on the Institute's mailing list, and we didn't receive a (paper) letter about this request until after the deadline, so maybe the deadline was more of a suggestion to show how urgent this is? You can read the letter from Dr. Hilgers here. If you have the means, you can donate online at the PPVI website and specify that your donation is for the capital campaign. The letter we received asked for a donation of $750 to purchase "one unit" of the new building.
If you can't support the Institute financially, please keep them and this effort in your prayers. I would love to see these plans become a reality. Think of all the couples that could be helped by this expansion! Let me say it again: ten NaPro physicians! How amazing would that be!
Here's a 13-minute video that details the background of NaPro and the Institute. There are some great pictures of Dr. Hilgers from the 70s or 80s in the first 3.5 minutes. :)
Monday, December 5, 2011
Dreams, meds, and Murphy's Law
This post is rather random. You've been warned. :)
1. The only typical side effect with naltrexone, according to a PPVI nurse, is vivid dreams. I experienced that a couple times when I first started LDN, but haven't noticed it since then even though my dose is much higher. But this week, I had two very vivid dreams related to IF back to back. In the first, DH and I adopted a baby girl. We picked her up from an airport parking lot at night. It was a very strange scenario, but I woke up and thought it was true for a moment. It felt very real. In the second, I was having an ultrasound during my post-peak phase and learned I was pregnant. I was so excited by the news. When I woke up, it felt as if I had truly had the ultrasound the day before. Granted I was groggy from sleep, but it took a lot of mental effort to figure out (convince myself?) that I did not have an ultrasound and was not pregnant. In the dream I was several days further along in my cycle than I am in real life so it really was not possible. IF must be really getting to me if the new theme for my dreams is babies.
2. DH and I started a second round of antibiotics—Zithromax. It's in the same family of antibiotics as Biaxin, so I am optimistic that it might help. Given the side effects I had from the last round of antibiotics, I was a little nervous about this one. The package insert was comforting: “This drug is usually well tolerated. Less than 1% of patients discontinued therapy due to side effects. The most common side effects are diarrhea (5%), nausea (3%), and abdominal pain (3%).” I was not happy to see that nausea was on the list though. I told DH I'd take diarrhea over nausea. He looked at me like I was crazy. Since he couldn't remember the last time he was nauseous, I told him he must have forgotten how it felt because surely no one would pick nausea over diarrhea. ;)
At dinnertime on day 2 of the Zithromax, I started feeling mildly nauseous—just like how it started with the Flagyl on day 2. I had flashbacks to last month. I didn't think I could take three weeks of it again. It's one thing to endure nausea and vomiting during pregnancy knowing that there will be a baby at the end of it, but to have to endure in order that you might possibly get pregnant (no guarantees, of course) is really tough. I figured I would wait and see what happened the next day. Fortunately, there has been no nausea since that night. Thank you, God!
3. I am a little extra hopeful this cycle. I have no reason to think the Biaxin did any good because my TEBB lasted as long as usual (5 days). But—perhaps irrationally—I am secretly hoping that maybe the drug did reduce inflammation enough in my uterus to allow implantation. And I've been at my current dose of T3 for almost a month, so this is the first full cycle where it might have an effect... I can make up scenarios all day long hoping this month will be the month, but that doesn't change reality. I know that. Please don't lock me up for insanity just yet. :) Plus it's Prayer Buddy time, and we all know how pregnancy rates among IFers increase dramatically during this time... To me, new treatment + extra prayers = more hope. :) (No pressure, Prayer Buddy. haha)
The other reason for more hope this cycle is that I noticed breast tenderness for the first time in a long time, and it hasn't gone away yet. So my hope isn't completely irrational. ;)
4. After ordering meds from Kubat's regularly for a while now, I've decided there is some version of Murphy's Law that applies. It would go something like this:
5. I will be glad to be able to get my naltrexone locally instead of from Kubat's as soon as I'm up to 50 mg, which hopefully happens tomorrow when the nurse returns my call. The PPVI protocol for increasing naltrexone has had me calling PPVI when I have 4-5 days of pills remaining to report how I'm feeling. It takes a day for the nurse to return my call, meaning Kubat's gets the order for the increased dose when I have 3-4 days of pills left. (I asked a nurse if I could call earlier than 5 days, and she said, "No, we have to follow the protocol." I said in my experience, Kubat's sometimes needs more than 4 days... She said 4 days is plenty. Isn't it ironic that my meds didn't arrive in 4 days after that conversation?) This stresses me out a little, so I just wanted to give you a heads up in case this would ever apply to you. If you have the choice, give Kubat's a week to be on the safe side. :)
6. DH and I are trying to focus on Advent even though everywhere we go is Christmas, Christmas, Christmas. The only decorations we have up are the stockings and the Advent wreath. We won't be putting anything else up including the tree until December 17th, the start of the O Antiphons and the "final" countdown to Christmas. A dear priest friend of ours suggested this idea to us before we were married. He reminded us that Catholics celebrate on a feast day and afterwards, not before. I need that reminder to help prepare for Christmas. It's been really nice to do our evening prayers with the Advent wreath lit.
7. Tomorrow is St. Nick's Day. I hung our stockings, and DH set out his shoes. (He grew up with the shoe tradition, and I grew up with stockings, so we're trying to merge them.) He asked me if I minded if he opened his presents in the morning while I was still sleeping. He gets up much earlier than me and didn't want to wait until he gets home in the evening, even though this is how we've done it every year. I said I wanted to open them together, so if he can get me out of bed at the crack of dawn, we can open them together. Getting me out of bed might be a challenge. I think he might resort to carrying me to the living room if I'm uncooperative. He is really excited about the presents. It's sweet. ;)
1. The only typical side effect with naltrexone, according to a PPVI nurse, is vivid dreams. I experienced that a couple times when I first started LDN, but haven't noticed it since then even though my dose is much higher. But this week, I had two very vivid dreams related to IF back to back. In the first, DH and I adopted a baby girl. We picked her up from an airport parking lot at night. It was a very strange scenario, but I woke up and thought it was true for a moment. It felt very real. In the second, I was having an ultrasound during my post-peak phase and learned I was pregnant. I was so excited by the news. When I woke up, it felt as if I had truly had the ultrasound the day before. Granted I was groggy from sleep, but it took a lot of mental effort to figure out (convince myself?) that I did not have an ultrasound and was not pregnant. In the dream I was several days further along in my cycle than I am in real life so it really was not possible. IF must be really getting to me if the new theme for my dreams is babies.
2. DH and I started a second round of antibiotics—Zithromax. It's in the same family of antibiotics as Biaxin, so I am optimistic that it might help. Given the side effects I had from the last round of antibiotics, I was a little nervous about this one. The package insert was comforting: “This drug is usually well tolerated. Less than 1% of patients discontinued therapy due to side effects. The most common side effects are diarrhea (5%), nausea (3%), and abdominal pain (3%).” I was not happy to see that nausea was on the list though. I told DH I'd take diarrhea over nausea. He looked at me like I was crazy. Since he couldn't remember the last time he was nauseous, I told him he must have forgotten how it felt because surely no one would pick nausea over diarrhea. ;)
At dinnertime on day 2 of the Zithromax, I started feeling mildly nauseous—just like how it started with the Flagyl on day 2. I had flashbacks to last month. I didn't think I could take three weeks of it again. It's one thing to endure nausea and vomiting during pregnancy knowing that there will be a baby at the end of it, but to have to endure in order that you might possibly get pregnant (no guarantees, of course) is really tough. I figured I would wait and see what happened the next day. Fortunately, there has been no nausea since that night. Thank you, God!
3. I am a little extra hopeful this cycle. I have no reason to think the Biaxin did any good because my TEBB lasted as long as usual (5 days). But—perhaps irrationally—I am secretly hoping that maybe the drug did reduce inflammation enough in my uterus to allow implantation. And I've been at my current dose of T3 for almost a month, so this is the first full cycle where it might have an effect... I can make up scenarios all day long hoping this month will be the month, but that doesn't change reality. I know that. Please don't lock me up for insanity just yet. :) Plus it's Prayer Buddy time, and we all know how pregnancy rates among IFers increase dramatically during this time... To me, new treatment + extra prayers = more hope. :) (No pressure, Prayer Buddy. haha)
The other reason for more hope this cycle is that I noticed breast tenderness for the first time in a long time, and it hasn't gone away yet. So my hope isn't completely irrational. ;)
4. After ordering meds from Kubat's regularly for a while now, I've decided there is some version of Murphy's Law that applies. It would go something like this:
If you need your refill in W days (e.g., W = 4 days), it will be delivered in X days, where X>W (e.g., X = 6 days).In other words, if you plan ahead, you'll get your refill quickly, and when you don't call until 4 days before you run out, you won't get the meds in time, even though 95% of the time you receive your meds in 3 days.
If you don't need your refill for Y days (where 7 < Y < 14), it will be delivered in Z days, where Z << Y. (Z = 3 days to be exact)
Note: << means "much less than" here.
5. I will be glad to be able to get my naltrexone locally instead of from Kubat's as soon as I'm up to 50 mg, which hopefully happens tomorrow when the nurse returns my call. The PPVI protocol for increasing naltrexone has had me calling PPVI when I have 4-5 days of pills remaining to report how I'm feeling. It takes a day for the nurse to return my call, meaning Kubat's gets the order for the increased dose when I have 3-4 days of pills left. (I asked a nurse if I could call earlier than 5 days, and she said, "No, we have to follow the protocol." I said in my experience, Kubat's sometimes needs more than 4 days... She said 4 days is plenty. Isn't it ironic that my meds didn't arrive in 4 days after that conversation?) This stresses me out a little, so I just wanted to give you a heads up in case this would ever apply to you. If you have the choice, give Kubat's a week to be on the safe side. :)
6. DH and I are trying to focus on Advent even though everywhere we go is Christmas, Christmas, Christmas. The only decorations we have up are the stockings and the Advent wreath. We won't be putting anything else up including the tree until December 17th, the start of the O Antiphons and the "final" countdown to Christmas. A dear priest friend of ours suggested this idea to us before we were married. He reminded us that Catholics celebrate on a feast day and afterwards, not before. I need that reminder to help prepare for Christmas. It's been really nice to do our evening prayers with the Advent wreath lit.
7. Tomorrow is St. Nick's Day. I hung our stockings, and DH set out his shoes. (He grew up with the shoe tradition, and I grew up with stockings, so we're trying to merge them.) He asked me if I minded if he opened his presents in the morning while I was still sleeping. He gets up much earlier than me and didn't want to wait until he gets home in the evening, even though this is how we've done it every year. I said I wanted to open them together, so if he can get me out of bed at the crack of dawn, we can open them together. Getting me out of bed might be a challenge. I think he might resort to carrying me to the living room if I'm uncooperative. He is really excited about the presents. It's sweet. ;)
Wednesday, November 30, 2011
Talking about IF
I did something I’ve never done before. I told someone I barely knew that we were infertile. Actually, I did it twice in the span of a week. This is a big deal for me since I’m super private about personal stuff. Normally I’d want to tell someone about our IF as much as I’d want tell someone we were having marriage problems (we’re not). Being shy and an introvert, I have to build trust with someone over time before I share anything personal. But in these two situations, I decided to take a risk…
The first conversation started as any get-to-know-you conversation goes. What do you do? How long have you been married? Do you have kids? They were seemingly innocent questions until the woman dropped every IF girl’s favorite question, “So don’t you WANT kids?” It struck me as a bit odd because of the setting. It was the lunch break during an all-day marriage prep session at our parish. I was sitting with the couple who was going to co-present the talk on NFP with me after lunch. We had done the talk together once before, so she knew we were going to talk about being open to life. Perhaps she was checking my credibility as a Catholic NFP instructor? Or maybe she was just curious because of how long we’ve been married. (I think other people’s curiosity about family size and TTC timelines is my biggest pet peeve…) Anyway… The question caught me off guard but she seemed trustworthy enough, so I admitted, “We’ve been trying for years.” I could tell she immediately felt guilty for asking the question. Her eyes widened and she repeated, “Years?? Oh. I’m sorry. I’ll pray for you.” I was impressed at her response. It’s probably the only “correct” response you can say to an IF girl that won’t hurt her feelings. Since many people don’t naturally come up with an acceptable response, I wondered if she’d previously had this conversation with someone else. It turns out she did; one of her good friends was infertile. I shared a bit about NaPro, and she was going to pass the info along to her friend. The rest of the conversation went as well as I could have hoped. She asked questions and listened to my answers, offering no advice whatsoever. If there were an IF sensitivity training course, she would have passed with flying colors. :)
Side note: The conversation made me think that everyone should have an IF friend who can teach her how to respond appropriately to someone with IF in case IF sensitivity doesn’t come naturally…
The second conversation happened at a party hosted by a woman from our parish. I had never met her before that night, but we had spoken on the phone. Our conversation started almost exactly like the one I described above—length of marriage followed by, “Do you have any kids?” She answered the questions first, stating she had four young children. When she asked me, and I said we didn’t have kids yet, she said, “Oh, you’re infertile, too.” It wasn’t a question. It was a statement. It felt refreshing that she would just assume we were IF. All I had to say was, “Yeah,” and she proceeded to tell me her IF story and how she adopted her children. She was rather outgoing, so I think she would have shared it with me even if I wasn’t IF. I could have talked to her all night, but I think it’s bad party etiquette to monopolize the hostess’s time... I did get to ask her details about adoption, and she was a wealth of information. She said that when she and her husband realized they were infertile, she didn’t want to do any testing to find out what was wrong; she wanted to pursue adoption right away. I had never met anyone who didn’t want to know the reason for her IF, so it was interesting to hear her perspective.
Based on these two encouraging experiences, I may be more likely to share our IF with someone now. I know that just because two individuals responded well doesn’t mean everyone else—or anyone else—will. I mean, I’m not ready to go shouting it from the rooftops (i.e., Facebook) that we’re IF. But at least it built up my courage a bit knowing that I can talk about IF without breaking into tears.
The first conversation started as any get-to-know-you conversation goes. What do you do? How long have you been married? Do you have kids? They were seemingly innocent questions until the woman dropped every IF girl’s favorite question, “So don’t you WANT kids?” It struck me as a bit odd because of the setting. It was the lunch break during an all-day marriage prep session at our parish. I was sitting with the couple who was going to co-present the talk on NFP with me after lunch. We had done the talk together once before, so she knew we were going to talk about being open to life. Perhaps she was checking my credibility as a Catholic NFP instructor? Or maybe she was just curious because of how long we’ve been married. (I think other people’s curiosity about family size and TTC timelines is my biggest pet peeve…) Anyway… The question caught me off guard but she seemed trustworthy enough, so I admitted, “We’ve been trying for years.” I could tell she immediately felt guilty for asking the question. Her eyes widened and she repeated, “Years?? Oh. I’m sorry. I’ll pray for you.” I was impressed at her response. It’s probably the only “correct” response you can say to an IF girl that won’t hurt her feelings. Since many people don’t naturally come up with an acceptable response, I wondered if she’d previously had this conversation with someone else. It turns out she did; one of her good friends was infertile. I shared a bit about NaPro, and she was going to pass the info along to her friend. The rest of the conversation went as well as I could have hoped. She asked questions and listened to my answers, offering no advice whatsoever. If there were an IF sensitivity training course, she would have passed with flying colors. :)
Side note: The conversation made me think that everyone should have an IF friend who can teach her how to respond appropriately to someone with IF in case IF sensitivity doesn’t come naturally…
The second conversation happened at a party hosted by a woman from our parish. I had never met her before that night, but we had spoken on the phone. Our conversation started almost exactly like the one I described above—length of marriage followed by, “Do you have any kids?” She answered the questions first, stating she had four young children. When she asked me, and I said we didn’t have kids yet, she said, “Oh, you’re infertile, too.” It wasn’t a question. It was a statement. It felt refreshing that she would just assume we were IF. All I had to say was, “Yeah,” and she proceeded to tell me her IF story and how she adopted her children. She was rather outgoing, so I think she would have shared it with me even if I wasn’t IF. I could have talked to her all night, but I think it’s bad party etiquette to monopolize the hostess’s time... I did get to ask her details about adoption, and she was a wealth of information. She said that when she and her husband realized they were infertile, she didn’t want to do any testing to find out what was wrong; she wanted to pursue adoption right away. I had never met anyone who didn’t want to know the reason for her IF, so it was interesting to hear her perspective.
Based on these two encouraging experiences, I may be more likely to share our IF with someone now. I know that just because two individuals responded well doesn’t mean everyone else—or anyone else—will. I mean, I’m not ready to go shouting it from the rooftops (i.e., Facebook) that we’re IF. But at least it built up my courage a bit knowing that I can talk about IF without breaking into tears.
Wednesday, November 23, 2011
Distractions from IF
What a month and a half it has been. It all started with an ER visit due to the worst pain I’ve felt in my life. Several doctor visits, tests, procedures, and some prescription medication followed. I have some lovely new pictures of my insides to add to my collection from my laparoscopy. Everything turned out to be normal except a small hernia, which the doctor shrugged off and said we don’t have to do anything about. The hernia doesn’t explain the pain I had, so some of the procedures may be repeated at a future date if the pain ever returns. So far, that pain was just a one-day occurrence.
What compounded things a bit was that my body did not react kindly to the cocktail of medications I was taking. Shortly after starting the above-mentioned prescription for a problem the ER doctor assumed I had, I started the antibiotic Flagyl to possibly combat my TEBB. Meanwhile, I had been slowly increasing my naltrexone dose under Dr. K’s direction to reach the usual dose they prescribe for PMS. Managing to take all the pills at the right times was the easy part (surprisingly). One medication was to be taken twice a day with a meal, another was not to be taken within an hour of eating (twice a day), and the third taken four times a day. (This excluded my T3, which is taken every 12 hours on an empty stomach, and the probiotic, which was not to be taken within 2 hours of the antibiotic, but prior to eating.) The hard part was dealing with the nausea and vomiting that resulted. It became pretty predictable at night. Naltrexone anytime after 6 PM plus either of the two new meds within hours of each other resulted in my GI system declaring war. When it got bad enough that I couldn’t think straight, I would be reduced to tears. I admit I’m pretty weak when it comes to that... No amount of eating after dinner would prevent or lessen the nausea (but it would give me heartburn so I slept on the couch in a sitting position several nights). Sometimes it would return after I had fallen asleep, and I’d go sit on the bathroom floor in the middle of the night until my stomach decided it was empty enough. If my experience is similar to what happens during pregnancy, I have a new profound respect of what women go through. I even tried to imagine that I was pregnant (I wasn’t, of course) to try to make dealing it better, but that didn’t help.
I spoke with Dr. K’s nurse several times. She said my side effects were really unusual for naltrexone; most women have no side effects and actually feel great. She thought that my hernia was further exacerbating the medication interactions. (She also informed me that it would cause extra nausea and heartburn during any future pregnancy on top of what is normal for pregnancy.) She gave me suggestions on how to try to reduce the side effects, including lowering the naltrexone, which helped sometimes. I ended up just sticking it out since the antibiotic was almost gone, and I was tapering off of the other prescribed medication from the ER visit (which was deemed unnecessary after all the tests). Just a few days ago, when I was down to only naltrexone and T3, all my side effects disappeared. In fact, I felt great. Fabulous even. It kind of feels like the small high you get after exercising. Or like the time right around ovulation where you feel extra motivated to get things done. So this is how naltrexone is supposed to work. I love my naltrexone now. :) I’m really looking forward to post-peak this cycle to see if my PMS is gone. And I’m almost to the point where I can take non-compounded naltrexone just once a day (easier than four times a day and cheaper hopefully). I’m at 32 mg (compounded) per day now. The end goal is 50 mg (non-compounded) per day. Things are looking up! :)
So after DH and I took the Flagyl simultaneously, there has been no change in my TEBB. Bummer. I wonder if they’ll try a different antibiotic next. Maybe Biaxin? I know that worked for one of my clients to get rid of her TEBB.
This whole series of events took my mind completely off of IF (and blogging and even reading blogs) for quite a while. I missed everyone and have some catching up to do!
We’re thinking seriously about doing the ultrasound series to monitor ovulation in January. PPVI said it would be best if DH could come along so we could TTC, but right now we’re just planning to have me go alone. It may be possible for DH to come for a couple days, but we won’t know that until the last minute because of his work schedule. I am looking forward to learning if my ovaries are doing their job!
What compounded things a bit was that my body did not react kindly to the cocktail of medications I was taking. Shortly after starting the above-mentioned prescription for a problem the ER doctor assumed I had, I started the antibiotic Flagyl to possibly combat my TEBB. Meanwhile, I had been slowly increasing my naltrexone dose under Dr. K’s direction to reach the usual dose they prescribe for PMS. Managing to take all the pills at the right times was the easy part (surprisingly). One medication was to be taken twice a day with a meal, another was not to be taken within an hour of eating (twice a day), and the third taken four times a day. (This excluded my T3, which is taken every 12 hours on an empty stomach, and the probiotic, which was not to be taken within 2 hours of the antibiotic, but prior to eating.) The hard part was dealing with the nausea and vomiting that resulted. It became pretty predictable at night. Naltrexone anytime after 6 PM plus either of the two new meds within hours of each other resulted in my GI system declaring war. When it got bad enough that I couldn’t think straight, I would be reduced to tears. I admit I’m pretty weak when it comes to that... No amount of eating after dinner would prevent or lessen the nausea (but it would give me heartburn so I slept on the couch in a sitting position several nights). Sometimes it would return after I had fallen asleep, and I’d go sit on the bathroom floor in the middle of the night until my stomach decided it was empty enough. If my experience is similar to what happens during pregnancy, I have a new profound respect of what women go through. I even tried to imagine that I was pregnant (I wasn’t, of course) to try to make dealing it better, but that didn’t help.
I spoke with Dr. K’s nurse several times. She said my side effects were really unusual for naltrexone; most women have no side effects and actually feel great. She thought that my hernia was further exacerbating the medication interactions. (She also informed me that it would cause extra nausea and heartburn during any future pregnancy on top of what is normal for pregnancy.) She gave me suggestions on how to try to reduce the side effects, including lowering the naltrexone, which helped sometimes. I ended up just sticking it out since the antibiotic was almost gone, and I was tapering off of the other prescribed medication from the ER visit (which was deemed unnecessary after all the tests). Just a few days ago, when I was down to only naltrexone and T3, all my side effects disappeared. In fact, I felt great. Fabulous even. It kind of feels like the small high you get after exercising. Or like the time right around ovulation where you feel extra motivated to get things done. So this is how naltrexone is supposed to work. I love my naltrexone now. :) I’m really looking forward to post-peak this cycle to see if my PMS is gone. And I’m almost to the point where I can take non-compounded naltrexone just once a day (easier than four times a day and cheaper hopefully). I’m at 32 mg (compounded) per day now. The end goal is 50 mg (non-compounded) per day. Things are looking up! :)
So after DH and I took the Flagyl simultaneously, there has been no change in my TEBB. Bummer. I wonder if they’ll try a different antibiotic next. Maybe Biaxin? I know that worked for one of my clients to get rid of her TEBB.
This whole series of events took my mind completely off of IF (and blogging and even reading blogs) for quite a while. I missed everyone and have some catching up to do!
We’re thinking seriously about doing the ultrasound series to monitor ovulation in January. PPVI said it would be best if DH could come along so we could TTC, but right now we’re just planning to have me go alone. It may be possible for DH to come for a couple days, but we won’t know that until the last minute because of his work schedule. I am looking forward to learning if my ovaries are doing their job!
Monday, September 26, 2011
Tales of a new doctor
I am officially a patient of Dr. K at the PPVI Institute. Yay! Since I was a patient there a few years ago, the process to become an active patient again was straightforward: fill out a few forms and have copies of my medical records sent to them. I would say it was a “quick” process except that the medical records department at the hospital where I had my laparoscopy took their sweet time in sending my records to Dr. K. Apparently they have up to a month to complete the record request, and they barely made that deadline. ;) (For new patients, there’s an extra step in the process: you have to wait for one of the PPVI physicians to review your case and make an initial written recommendation, which is mailed to you.)
Dr. K’s first two recommendations were to have an ultrasound series and endometrial cultures done. The cultures I had done a year ago were not thorough enough. Dr. K wanted to test for six different types of organisms which might be taking up residence in my uterus: aerobes, anaerobes, mycoplasma, ureaplasma, Chlamydia, and fungus. The cultures could be done locally, but the ultrasounds would have to be done by a NaPro-trained ultrasound tech. Knowing that a trip to Omaha probably isn’t feasible for me in the near future, I asked if I could have them done locally as well (assuming there was a 99% chance they would say no). They said no. I had heard of cases where a non-NaPro ultrasound tech is given written directions on how to do the NaPro ultrasound, so that’s why I inquired. Obviously that is far from ideal, but I figured it would be better than no ultrasound at all.
DH and I have been discussing it, and he is really supportive of getting the ultrasounds series done. If he had said it’s too much hassle to make the trip, I would have gone along with that and not pushed the idea. It makes you feel really good when your husband is on board. :) DH is trying to plan how he could take a week off, which is even more encouraging because normally it’s hard for him to even take one day off, let alone a week. Dr. K said if it’s at all possible, DH should come along so we can TTC the cycle of the ultrasounds. The bigger issue now is that I don’t have enough vacation days to use; I used them up during the trip to visit DH’s family. So I’d either need special permission to work from the hotel, which is not out of the question—except I’d rather not have to fill my boss in on the details of my IF and the reason for this trip—or we’ll have to wait until January at the earliest. We may have to wait until January anyway since I estimate that my ultrasound week would fall during both Thanksgiving and Christmas. I honestly wouldn’t mind doing the series over Thanksgiving, but I don’t know that the clinic would be open or that the ultrasound tech would be too excited about the idea. ;)
To have the endometrial cultures done, I made an appointment with an ob/gyn in town whom I had never met. I needed a new ob/gyn anyway for pap smears (and maybe, hopefully, God-willing someday for the ob aspect). Armed with a prescription script from Dr. K listing the required tests, I was mentally resigned to face any reaction on the spectrum from indifference to hostility. You just never know how a mainstream doctor is going to react to NaPro.
Before the doctor even came into the exam room, I could hear the conversation just outside the door between the nurse and doctor. Walls and doors don't block any sound in this office apparently. The doctor wanted the nurse to call PPVI to ask how the sample was to be collected. She was transferred a few times before she actually got a PPVI doctor on the phone. I breathed a sigh of relief. Who knows where the doctor might be—with a patient, in the middle of surgery, on vacation—especially on a Friday afternoon...
In the meantime the doctor came in to meet me and take my history. He wanted to know what kind of tests had been done for our IF and why these cultures were being requested. I described the hormone profile, surgery, and why it was suspected that I had an endometrial infection. No doctor can argue that periods lasting up to 13 days including a week of brown bleeding are normal. At least I had that evidence going for me! Most mainstream doctors would not suspect infection as a cause of brown bleeding, however.
He asked if we'd done ovulation stimulation or ovulation predictor kits to see if I'm ovulating or IVF. I said no to all of the above. I mentioned that I was charting to know the time of fertility and that the next thing PPVI wants to investigate is whether I'm ovulating...by doing ultrasounds. He looked like he was about ready to roll his eyes. He said that what I've had done so far is not usually how most doctors handle IF pts. Really? I had no idea! ;) I wonder if he thought I'd been shortchanged out of the usual IF offerings: Clomid, ovulation kits, and then IVF?
One of the first things I had said to him was that the approach my (NaPro) doctors were using was not mainstream. at. all. It might have made a tad more sense why we were taking this “unusual” route if I had explained that IVF and any other ART are not options for us morally and that we’d like to actually fix what’s wrong with my body, but there wasn't an opportunity to interject that information. You can only cover so much at the first appointment.
He also said that this unconventional approach was expensive.
Yes, but since when is IVF cheap? And it’s this “unconventional approach” that is responsible for finding and fixing the first two of my IF-related problems—endometriosis and a luteal phase defect—neither of which mainstream medicine would have found nor fixed. Why is it so hard for mainstream doctors to understand this? It’s frustrating...
He stopped short of saying NaPro is "silly" or "a waste of money" but I don't think those thoughts were far from his mind.
He left the room when the nurse had a PPVI doctor on the phone. Again I could hear every word he said loud and clear. I heard him express his skepticism about everything that had been done to me so far. I'm sure the PPVI staff gets this all the time.
He returned to my exam room with good news, bad news, and interesting news. The good news was they would be able to do the cultures. The bad news was that they were going to do an endometrial biopsy, and it was going to hurt. I know what you're thinking. Noooo! Not a biopsy! Those are horrible! I would agree. Last year’s biopsy was no fun. But I pretty much expected that was going to be the case, so I consented.
And the interesting news? He knew the PPVI doctor with whom he had just spoken. In other words, he was personally acquainted with her, and she had explained NaPro to him in the past multiple times. Talk about a small world! Perhaps it was Providence? :) That connection I think may be a substantial reason why he turned out to be so cooperative.
The doctor left to get the necessary supplies. The two nurses in the hall were having a tough time figuring out what kind of swabs were needed for the six different cultures that Dr. K wanted. I heard them make a couple phone calls—presumably to their lab. I heard them pull out the instruction manual for the swabs they had on hand. I heard them say they don't have the all the right ones. I heard them on the phone again. This went on for a while. Meanwhile I decided to make myself comfortable and lie back on the exam table.
The doctor returned briefly to say they were working on it and promised they wouldn't close up the office for the weekend with me covered with a sheet on the exam table. I was glad he was so good-natured about the whole thing.
Finally he returned, ready to go. He said PPVI had called back and changed their instructions: no biopsy needed. Just use the swabs. That meant no scary metal objects through my cervix, just a long q-tip-like stick. Yay! They had to take 3 or 4 samples but it did not hurt at all. I'd almost say a pap smear is worse. I highly recommend this method over the biopsy. Afterward the doctor gave me the (half-joking) disclaimer that it wasn't his fault if it turns out PPVI really needed a biopsy and I end up having to come back. He was just following orders. ;)
Now as much as this doctor was clearly skeptical of the NaPro approach, he was and is remarkably cooperative. He said he will do whatever PPVI asks, as if he's the local arm of their clinic. Wow! I was stunned. I was definitely not expecting that. His only request was that PPVI send him a summary of their approach to treating me so he understands the bigger picture. Seems reasonable to me. Hopefully PPVI already has such a document. He also wants all PPVI orders faxed to his office to ensure legitimacy and so he can follow along what is being done. Not a problem, I assume. I bet this will be a bit eye-opening for him. But to be honest I'm not sure how many more orders for tests and things there will be, other than the monthly Peak+7 blood draws. Since I just go to the hospital lab for that, it doesn't really involve him, unless for some reason the lab stopped accepting the paper order that I bring along and needed an order from a local doctor. I guess I'll just have PPVI fax him orders when they need him to do something—pelvic exam, other test, etc.
They said the fungal culture could take up to three weeks because it grows slowly. Nothing with IF is ever quick, is it? ;)
Dr. K’s first two recommendations were to have an ultrasound series and endometrial cultures done. The cultures I had done a year ago were not thorough enough. Dr. K wanted to test for six different types of organisms which might be taking up residence in my uterus: aerobes, anaerobes, mycoplasma, ureaplasma, Chlamydia, and fungus. The cultures could be done locally, but the ultrasounds would have to be done by a NaPro-trained ultrasound tech. Knowing that a trip to Omaha probably isn’t feasible for me in the near future, I asked if I could have them done locally as well (assuming there was a 99% chance they would say no). They said no. I had heard of cases where a non-NaPro ultrasound tech is given written directions on how to do the NaPro ultrasound, so that’s why I inquired. Obviously that is far from ideal, but I figured it would be better than no ultrasound at all.
DH and I have been discussing it, and he is really supportive of getting the ultrasounds series done. If he had said it’s too much hassle to make the trip, I would have gone along with that and not pushed the idea. It makes you feel really good when your husband is on board. :) DH is trying to plan how he could take a week off, which is even more encouraging because normally it’s hard for him to even take one day off, let alone a week. Dr. K said if it’s at all possible, DH should come along so we can TTC the cycle of the ultrasounds. The bigger issue now is that I don’t have enough vacation days to use; I used them up during the trip to visit DH’s family. So I’d either need special permission to work from the hotel, which is not out of the question—except I’d rather not have to fill my boss in on the details of my IF and the reason for this trip—or we’ll have to wait until January at the earliest. We may have to wait until January anyway since I estimate that my ultrasound week would fall during both Thanksgiving and Christmas. I honestly wouldn’t mind doing the series over Thanksgiving, but I don’t know that the clinic would be open or that the ultrasound tech would be too excited about the idea. ;)
To have the endometrial cultures done, I made an appointment with an ob/gyn in town whom I had never met. I needed a new ob/gyn anyway for pap smears (and maybe, hopefully, God-willing someday for the ob aspect). Armed with a prescription script from Dr. K listing the required tests, I was mentally resigned to face any reaction on the spectrum from indifference to hostility. You just never know how a mainstream doctor is going to react to NaPro.
Before the doctor even came into the exam room, I could hear the conversation just outside the door between the nurse and doctor. Walls and doors don't block any sound in this office apparently. The doctor wanted the nurse to call PPVI to ask how the sample was to be collected. She was transferred a few times before she actually got a PPVI doctor on the phone. I breathed a sigh of relief. Who knows where the doctor might be—with a patient, in the middle of surgery, on vacation—especially on a Friday afternoon...
In the meantime the doctor came in to meet me and take my history. He wanted to know what kind of tests had been done for our IF and why these cultures were being requested. I described the hormone profile, surgery, and why it was suspected that I had an endometrial infection. No doctor can argue that periods lasting up to 13 days including a week of brown bleeding are normal. At least I had that evidence going for me! Most mainstream doctors would not suspect infection as a cause of brown bleeding, however.
He asked if we'd done ovulation stimulation or ovulation predictor kits to see if I'm ovulating or IVF. I said no to all of the above. I mentioned that I was charting to know the time of fertility and that the next thing PPVI wants to investigate is whether I'm ovulating...by doing ultrasounds. He looked like he was about ready to roll his eyes. He said that what I've had done so far is not usually how most doctors handle IF pts. Really? I had no idea! ;) I wonder if he thought I'd been shortchanged out of the usual IF offerings: Clomid, ovulation kits, and then IVF?
One of the first things I had said to him was that the approach my (NaPro) doctors were using was not mainstream. at. all. It might have made a tad more sense why we were taking this “unusual” route if I had explained that IVF and any other ART are not options for us morally and that we’d like to actually fix what’s wrong with my body, but there wasn't an opportunity to interject that information. You can only cover so much at the first appointment.
He also said that this unconventional approach was expensive.
Yes, but since when is IVF cheap? And it’s this “unconventional approach” that is responsible for finding and fixing the first two of my IF-related problems—endometriosis and a luteal phase defect—neither of which mainstream medicine would have found nor fixed. Why is it so hard for mainstream doctors to understand this? It’s frustrating...
He stopped short of saying NaPro is "silly" or "a waste of money" but I don't think those thoughts were far from his mind.
He left the room when the nurse had a PPVI doctor on the phone. Again I could hear every word he said loud and clear. I heard him express his skepticism about everything that had been done to me so far. I'm sure the PPVI staff gets this all the time.
He returned to my exam room with good news, bad news, and interesting news. The good news was they would be able to do the cultures. The bad news was that they were going to do an endometrial biopsy, and it was going to hurt. I know what you're thinking. Noooo! Not a biopsy! Those are horrible! I would agree. Last year’s biopsy was no fun. But I pretty much expected that was going to be the case, so I consented.
And the interesting news? He knew the PPVI doctor with whom he had just spoken. In other words, he was personally acquainted with her, and she had explained NaPro to him in the past multiple times. Talk about a small world! Perhaps it was Providence? :) That connection I think may be a substantial reason why he turned out to be so cooperative.
The doctor left to get the necessary supplies. The two nurses in the hall were having a tough time figuring out what kind of swabs were needed for the six different cultures that Dr. K wanted. I heard them make a couple phone calls—presumably to their lab. I heard them pull out the instruction manual for the swabs they had on hand. I heard them say they don't have the all the right ones. I heard them on the phone again. This went on for a while. Meanwhile I decided to make myself comfortable and lie back on the exam table.
The doctor returned briefly to say they were working on it and promised they wouldn't close up the office for the weekend with me covered with a sheet on the exam table. I was glad he was so good-natured about the whole thing.
Finally he returned, ready to go. He said PPVI had called back and changed their instructions: no biopsy needed. Just use the swabs. That meant no scary metal objects through my cervix, just a long q-tip-like stick. Yay! They had to take 3 or 4 samples but it did not hurt at all. I'd almost say a pap smear is worse. I highly recommend this method over the biopsy. Afterward the doctor gave me the (half-joking) disclaimer that it wasn't his fault if it turns out PPVI really needed a biopsy and I end up having to come back. He was just following orders. ;)
Now as much as this doctor was clearly skeptical of the NaPro approach, he was and is remarkably cooperative. He said he will do whatever PPVI asks, as if he's the local arm of their clinic. Wow! I was stunned. I was definitely not expecting that. His only request was that PPVI send him a summary of their approach to treating me so he understands the bigger picture. Seems reasonable to me. Hopefully PPVI already has such a document. He also wants all PPVI orders faxed to his office to ensure legitimacy and so he can follow along what is being done. Not a problem, I assume. I bet this will be a bit eye-opening for him. But to be honest I'm not sure how many more orders for tests and things there will be, other than the monthly Peak+7 blood draws. Since I just go to the hospital lab for that, it doesn't really involve him, unless for some reason the lab stopped accepting the paper order that I bring along and needed an order from a local doctor. I guess I'll just have PPVI fax him orders when they need him to do something—pelvic exam, other test, etc.
They said the fungal culture could take up to three weeks because it grows slowly. Nothing with IF is ever quick, is it? ;)
Thursday, September 22, 2011
Visiting the in-laws
Here I am crawling out from under my rock to post an update. :)
We had a pretty nice vacation visiting DH's family. They live far away so I've only seen them a few times since we’ve been married. One particular day we spent the entire day with DH’s parents in a nearby town—visiting a garden, strolling through cute shops, etc. The following day my MIL handed us her camera so we could see the pictures she had taken of her grandson (our nephew) whom I had yet to meet. We flipped through lots of pictures of the baby. Then we came to a picture from our outing together the day before. There was one picture of the garden and that was it. They had spent the entire day with us in some rather picturesque areas and had not taken a single picture of us. Did I mention it had been two years since they last saw me? DH just shrugged it off. Maybe it only strikes a girl as odd if she's PMSing and is more prone to feel sorry for herself. Of course babies are much cuter to photograph—I know that—especially if that baby is the one and only grandchild who visits once a week (meaning lots of opportunities for photo shoots). It still hurt though because I felt like DH and I were second class because we don't have kids. It didn't help that I heard my MIL rave about her wonderful grandson fairly often during our visit. I doubt she meant to rub it in our faces. I mean, she never asked us when we were going to have kids, but it got old after a while.
DH's parents know we're infertile. Or at least they know that we've been TTC for a long time, and it obviously hasn't worked yet. DH doesn't give them updates, and they don't ask. I guess I don't mind that that's how it is. I greatly prefer it to constant questions and other random comments.
I met my nephew a couple days later. I admit he was pretty cute. There's something about a baby smiling at me that just melts my IF heart. I couldn't bring myself to hold him though. Just to keep myself from completely breaking down in tears (I was still PMSing), I had to put my IF sadness in a little “box” and shove it to the back of my mind. That was the only way I could put on a happy face. I didn't think I could pull it off while holding him. I did play with him a little so as not to appear that I completely dislike babies. ;)
I also met my SIL for the first time. The more I got to know her, the more I liked her. She is still kind of overwhelmed by the events of the last year—pregnancy, moving several hours away from her friends to live with my BIL, birth, wedding, and now raising their son.
During our trip we were also able to do a mini pilgrimage, visiting two beautiful cathedrals and a basilica. At each church we lit a candle and prayed for all those still waiting, especially my prayer buddy and all those in the IF blogging community. I prayed for as many of you by name as I could remember.
We had a pretty nice vacation visiting DH's family. They live far away so I've only seen them a few times since we’ve been married. One particular day we spent the entire day with DH’s parents in a nearby town—visiting a garden, strolling through cute shops, etc. The following day my MIL handed us her camera so we could see the pictures she had taken of her grandson (our nephew) whom I had yet to meet. We flipped through lots of pictures of the baby. Then we came to a picture from our outing together the day before. There was one picture of the garden and that was it. They had spent the entire day with us in some rather picturesque areas and had not taken a single picture of us. Did I mention it had been two years since they last saw me? DH just shrugged it off. Maybe it only strikes a girl as odd if she's PMSing and is more prone to feel sorry for herself. Of course babies are much cuter to photograph—I know that—especially if that baby is the one and only grandchild who visits once a week (meaning lots of opportunities for photo shoots). It still hurt though because I felt like DH and I were second class because we don't have kids. It didn't help that I heard my MIL rave about her wonderful grandson fairly often during our visit. I doubt she meant to rub it in our faces. I mean, she never asked us when we were going to have kids, but it got old after a while.
DH's parents know we're infertile. Or at least they know that we've been TTC for a long time, and it obviously hasn't worked yet. DH doesn't give them updates, and they don't ask. I guess I don't mind that that's how it is. I greatly prefer it to constant questions and other random comments.
I met my nephew a couple days later. I admit he was pretty cute. There's something about a baby smiling at me that just melts my IF heart. I couldn't bring myself to hold him though. Just to keep myself from completely breaking down in tears (I was still PMSing), I had to put my IF sadness in a little “box” and shove it to the back of my mind. That was the only way I could put on a happy face. I didn't think I could pull it off while holding him. I did play with him a little so as not to appear that I completely dislike babies. ;)
I also met my SIL for the first time. The more I got to know her, the more I liked her. She is still kind of overwhelmed by the events of the last year—pregnancy, moving several hours away from her friends to live with my BIL, birth, wedding, and now raising their son.
During our trip we were also able to do a mini pilgrimage, visiting two beautiful cathedrals and a basilica. At each church we lit a candle and prayed for all those still waiting, especially my prayer buddy and all those in the IF blogging community. I prayed for as many of you by name as I could remember.
Thursday, July 28, 2011
Polypharmacy
And I'm only 30.
Here's my current list:
Every morning I fill up a little container with all the pills for the day. DH took one look at my (filled) container and asked, “How old are you?? 80??” Not funny, DH. Not funny. ;)
My med list isn't that long, compared to some of you. But with the latest additions, I am starting to feel a little elderly with the number of pills I'm taking per day. Yes, most of them are OTC but it still adds up. I would use a regular pill box that I could fill weekly but I’d have to get a huge one. That might really reinforce the elderly feeling. ;) I am thankful that I don't have to set an alarm to take any of them like I did when I was on antibiotics so I wouldn't miss a dose. I suppose I shouldn’t speak too soon; I am becoming a patient at the PPVI Institute, which means I may go back on antibiotics and/or T3. Years ago when I was a patient at PPVI they had me on T3. And my TEBB refuses to go away so I assume they’ll recommend an antibiotic I haven’t tried already. Infection and adrenal fatigue are the only two remaining causes for my TEBB that haven’t been fully investigated. The other (known) causes have been pretty much ruled out or are currently being treated. I suppose there’s always a chance my TEBB is “unexplained” but let’s not talk about that now. ;)
I'm going to be doing some traveling soon so I need to stay extra organized with all these pills. I don't want to bring all the bottles with me...it would take up half of my bag I think! This will be the first time I’ll have to transport syringes and HCG. Can't a girl catch a break and have a nice vacation without having to lug along all her injection supplies? ;) I guess we'll just do the best we can.
Here's my current list:
- LDN
- Fish oil
- Vitamin B6
- Vitamin D3
- Calcium/vitamin D
- Prenatal vitamin
- HCG (post-peak)
- Probiotic
Every morning I fill up a little container with all the pills for the day. DH took one look at my (filled) container and asked, “How old are you?? 80??” Not funny, DH. Not funny. ;)
My med list isn't that long, compared to some of you. But with the latest additions, I am starting to feel a little elderly with the number of pills I'm taking per day. Yes, most of them are OTC but it still adds up. I would use a regular pill box that I could fill weekly but I’d have to get a huge one. That might really reinforce the elderly feeling. ;) I am thankful that I don't have to set an alarm to take any of them like I did when I was on antibiotics so I wouldn't miss a dose. I suppose I shouldn’t speak too soon; I am becoming a patient at the PPVI Institute, which means I may go back on antibiotics and/or T3. Years ago when I was a patient at PPVI they had me on T3. And my TEBB refuses to go away so I assume they’ll recommend an antibiotic I haven’t tried already. Infection and adrenal fatigue are the only two remaining causes for my TEBB that haven’t been fully investigated. The other (known) causes have been pretty much ruled out or are currently being treated. I suppose there’s always a chance my TEBB is “unexplained” but let’s not talk about that now. ;)
I'm going to be doing some traveling soon so I need to stay extra organized with all these pills. I don't want to bring all the bottles with me...it would take up half of my bag I think! This will be the first time I’ll have to transport syringes and HCG. Can't a girl catch a break and have a nice vacation without having to lug along all her injection supplies? ;) I guess we'll just do the best we can.
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