Hello to all ICLW'ers.
I have a confession to make. I some how managed to get pregnant. Forgive me.
We were waiting for our next appointment and first treatment with our RE when all of a sudden the bunny died.
I assure you, it was completely unexpected.
Apparently it happened in a week while my father was hospitalized and I was over my head in worry. It happened in a cycle where I didn't see any sign I was ovulating. It happened in a cycle where we were desperately trying to cram sex in between hospital visits. It happened in a cycle when we least expected it. Although for the record it did not happen when we just relaxed.
I did not know I would be pregnant when i signed up for ICLW this time, so I hope you will forgive me.
My background is that my husband and I have been trying for 13 months. We had a miscarriage in September of last year. We had seen an RE. We thought this would never happen. As a patient with Cushing's who has had 1 of her adrenal glands removed I was supposed to be infertile. Completely. We weren't even sure if we would be able to get pregnant with IVF. There as so few cases of Cushing's women getting pregnant they quite often still make the medical journals.
And then suddenly it happened by accident.
What remains to be seen is if it will stick.
I look forward to reading everyone's blogs this month. But I understand completely that this might make my blog difficult for some of you to read. So... my blog has moved from trying to conceive to hoping to stay pregnant.
Showing posts with label cushing's. Show all posts
Showing posts with label cushing's. Show all posts
Tuesday, 21 May 2013
Wednesday, 8 May 2013
Stunned
I can't relax. I've been here before. I've progressed this far into my pregnancy only to have it end.
There are so many reasons this was not supposed to happen, and so many reasons to expect that it won't last.
1) I have Cushing's disease, which causes infertility. It is a disease in which a tumor on your pituitary or adrenal gland makes you pump out so much cortisol coursing through your body that everything else kind of stops working properly. It also causes weight gain, facial hair, messed up hormones, diabetes, high blood pressure, acanthosis nigricans, wow... it's so fun... it's also so rare that we have the distinction of being an episode of House. Season 1, episode 16 "Heavy".
2) I have a 10 day luteal phase. I have been taking Vitamin B6 for about 6 weeks. This month was the first full month where I had taken B6 throughout my cycle. Did it help? do I have to become a vitamin believer now?
3) I have hypothyroidism. This is likely due to the excess glucocorticosteroids from the cushing's. After the removal of the adrenal (non cancercous) tumor it is necessary to be continuously observed for Hasimoto's disease.
4) I am nearly 40. Ah the joys of advanced maternal age... Even if I progress through this pregnancy I won't be able to relax for months.
5) There was no LH surge this month. I tested. I tested the crap out of my pee this month. I was like a scientist as soon as I woke up every freaking morning. There was hardly any CM. There was only a most minor of temperature shifts compared to normal... usually I take my temp when i wake up about 4 in the morning. It is usually 36.2 for pre ovulation, 36.6 for post ovulation. This month it was 36.4... It wasn't until about cycle day 30 when it suddenly shifted to 36.6 then 36.8 where it sits right now.
So far this pregnancy has been completely different from the last one. No implantation bleeding, no spotting. So far I feel like I am in a perpetual state of pms cramps. And fatigue... but part of that may just be because I haven't slept much... I am too busy checking my body for signs and symptoms that the pregnancy is still here... I know that different is good... different is better... maybe this one is different enough to stay.
I also feel guilty right now, that this has happened for me, at least for now, and so many people who have worked so much harder are still working, are still wishing and hoping for their dream.
Thank you all for your good wishes... I am hoping and wishing fervently that the same thing happens for you, and soon.
I'm still holding my breath.. I am afraid to exhale....
There are so many reasons this was not supposed to happen, and so many reasons to expect that it won't last.
1) I have Cushing's disease, which causes infertility. It is a disease in which a tumor on your pituitary or adrenal gland makes you pump out so much cortisol coursing through your body that everything else kind of stops working properly. It also causes weight gain, facial hair, messed up hormones, diabetes, high blood pressure, acanthosis nigricans, wow... it's so fun... it's also so rare that we have the distinction of being an episode of House. Season 1, episode 16 "Heavy".
2) I have a 10 day luteal phase. I have been taking Vitamin B6 for about 6 weeks. This month was the first full month where I had taken B6 throughout my cycle. Did it help? do I have to become a vitamin believer now?
3) I have hypothyroidism. This is likely due to the excess glucocorticosteroids from the cushing's. After the removal of the adrenal (non cancercous) tumor it is necessary to be continuously observed for Hasimoto's disease.
4) I am nearly 40. Ah the joys of advanced maternal age... Even if I progress through this pregnancy I won't be able to relax for months.
5) There was no LH surge this month. I tested. I tested the crap out of my pee this month. I was like a scientist as soon as I woke up every freaking morning. There was hardly any CM. There was only a most minor of temperature shifts compared to normal... usually I take my temp when i wake up about 4 in the morning. It is usually 36.2 for pre ovulation, 36.6 for post ovulation. This month it was 36.4... It wasn't until about cycle day 30 when it suddenly shifted to 36.6 then 36.8 where it sits right now.
So far this pregnancy has been completely different from the last one. No implantation bleeding, no spotting. So far I feel like I am in a perpetual state of pms cramps. And fatigue... but part of that may just be because I haven't slept much... I am too busy checking my body for signs and symptoms that the pregnancy is still here... I know that different is good... different is better... maybe this one is different enough to stay.
I also feel guilty right now, that this has happened for me, at least for now, and so many people who have worked so much harder are still working, are still wishing and hoping for their dream.
Thank you all for your good wishes... I am hoping and wishing fervently that the same thing happens for you, and soon.
I'm still holding my breath.. I am afraid to exhale....
Thursday, 2 May 2013
Have you met my date, Murphy?
Yesterday was ruled by Murphy's law.
I had such high hopes for yesterday. I had it all planned out. Leave work, grab my guy, dinner, maybe a movie, dinner. Nice romantic night.
Unfortunately I forgot to check my calendar. I started my day with a meeting, pretty much a meeting that I have been working towards for a year now and if they told me I sucked at my job then it was game over. It went "ok". Not knock it out of the park fantastic... because half the people there hadn't bothered to read the reports and therefore were making comments on what they "thought" the reports said (sigh). But ok.
Turns out I had a physical booked for yesterday. I have a small confession. I haven't had a physical in a few years... why? because i hate them. I hate people staring deep into my cervix. Now, of course, i'm about to pay people vast sums of money to stand collectively at the opening to my cervix so I have to get over it. The universe decided to teach me a lesson.
"Do you mind if the student sits in?"
Sits in?? on my pap smear? Damn, of course I mind! I don't really want even you to sit in... but what do I answer "Ummm... suure". I try to make it sound as reluctant as possible so maybe she'll pick up on the fact that no I don't really want her there. But the problem with having a disease as rare as cushing's is that no matter how mundane the procedure you are having done they will actively round up every student in the hospital to have a look at your lymph nodes because there is a very real chance that the nurse or doctor will never seen another Cushing's patient in their career.
As I sat on the table I broke out in flop sweats. The paper stuck to my legs so by the end that little piece of paper was shredded like it once contained confidential information that had to be destroyed.
Then they had to send me for an ECG... they thought my heart beat seemed a little "irregular". You think??
The ECG was in the same hospital my father was in, so I went for a visit before he went to the opera and I fought my way home through traffic. He met with his oncologist yesterday and I wanted to know what she said. Then he was supposed to see the nephrologist. Suddenly, sitting there, my work blackberry starts to buzz... damn it. I had forgotten about the reception I was supposed to attend.
I spend the evening stuck in traffic then clapping politely as awards are handed out. I go home to kiss my husband. Trip over a piece of furniture, pull out a piece of wood with a nail in it which punctures my slipper and into my foot.
I've had better days.
I had such high hopes for yesterday. I had it all planned out. Leave work, grab my guy, dinner, maybe a movie, dinner. Nice romantic night.
Unfortunately I forgot to check my calendar. I started my day with a meeting, pretty much a meeting that I have been working towards for a year now and if they told me I sucked at my job then it was game over. It went "ok". Not knock it out of the park fantastic... because half the people there hadn't bothered to read the reports and therefore were making comments on what they "thought" the reports said (sigh). But ok.
Turns out I had a physical booked for yesterday. I have a small confession. I haven't had a physical in a few years... why? because i hate them. I hate people staring deep into my cervix. Now, of course, i'm about to pay people vast sums of money to stand collectively at the opening to my cervix so I have to get over it. The universe decided to teach me a lesson.
"Do you mind if the student sits in?"
Sits in?? on my pap smear? Damn, of course I mind! I don't really want even you to sit in... but what do I answer "Ummm... suure". I try to make it sound as reluctant as possible so maybe she'll pick up on the fact that no I don't really want her there. But the problem with having a disease as rare as cushing's is that no matter how mundane the procedure you are having done they will actively round up every student in the hospital to have a look at your lymph nodes because there is a very real chance that the nurse or doctor will never seen another Cushing's patient in their career.
As I sat on the table I broke out in flop sweats. The paper stuck to my legs so by the end that little piece of paper was shredded like it once contained confidential information that had to be destroyed.
Then they had to send me for an ECG... they thought my heart beat seemed a little "irregular". You think??
The ECG was in the same hospital my father was in, so I went for a visit before he went to the opera and I fought my way home through traffic. He met with his oncologist yesterday and I wanted to know what she said. Then he was supposed to see the nephrologist. Suddenly, sitting there, my work blackberry starts to buzz... damn it. I had forgotten about the reception I was supposed to attend.
I spend the evening stuck in traffic then clapping politely as awards are handed out. I go home to kiss my husband. Trip over a piece of furniture, pull out a piece of wood with a nail in it which punctures my slipper and into my foot.
I've had better days.
Thursday, 25 April 2013
My ICLW introduction post 4 days late (just like i wish my period was)
This week I am participating in International Comment Leaving Week for the first time. I am new to blogging and this week has been amazing to get to read so many other peoples journeys. Each of us is at different places and have different struggles. I have found some incredible new blogs to read and have read parts of each and everyone one on the list so far.
This has, however, made me realize that I FAILED EPICALLY because it seems that it would have been nice to take the time to actually introduce myself to anyone stopping by for the first time.
We are at the start of our journey. We have been TTC for 13 heartbreaking months. For my 39th birthday we got the gift we were waiting for.
You know that really irritating home pregnancy test commercial that starts "Don't you wish you could know you are pregnant as soon as it happens?" Well I did. On my 39th birthday I had the most vicious awful cramps. I had some light bleeding. It was all exactly 7 days post ovulation. Then the bleeding stopped. I felt every single symptom I should. I just KNEW I was pregnant.
When I finally took a home pregnancy test 6 days later, 1 day before my period my husband actually NODDED AT ME AND WENT BACK TO READING HIS BOOK. Because as far as he was concerned, we had known for a week already, he couldn't understand why I was telling him again.
That was my momentous reveal.
We are no longer pregnant. But he has learned that if we ever get pregnant again that nodding is not an acceptable response.
My husband and I are older, I am still 39 for a few months, my husband is 44. We are aware of the constantly ticking clock. Our time is passing. We found each other late in life and have been married less than a year. We both want children. We hope that we will be one of the lucky ones.
We have consulted with an RE but because i did get pregnant within 6 months of trying she wants so to try for a minimum of another 7 cycles after the miscarriage before we start anything more intensive. We are in the middle of cycle 5. Our next appointment with the RE is at the end of July.
Our fertility struggles are complicated by my diagnosis and treatment for adrenal Cushing's and now it looks like hypothyroidism.
Currently we share our home with a small black cat who begrudgingly allows us to use the bedroom between 11pm and 7am... but going to bed early or waking up late results in caterwauling like you wouldn't believe.
So, that is my introduction, my story in a nutshell. Thank you to everyone for sharing your stories with me.
This has, however, made me realize that I FAILED EPICALLY because it seems that it would have been nice to take the time to actually introduce myself to anyone stopping by for the first time.
We are at the start of our journey. We have been TTC for 13 heartbreaking months. For my 39th birthday we got the gift we were waiting for.
You know that really irritating home pregnancy test commercial that starts "Don't you wish you could know you are pregnant as soon as it happens?" Well I did. On my 39th birthday I had the most vicious awful cramps. I had some light bleeding. It was all exactly 7 days post ovulation. Then the bleeding stopped. I felt every single symptom I should. I just KNEW I was pregnant.
When I finally took a home pregnancy test 6 days later, 1 day before my period my husband actually NODDED AT ME AND WENT BACK TO READING HIS BOOK. Because as far as he was concerned, we had known for a week already, he couldn't understand why I was telling him again.
That was my momentous reveal.
We are no longer pregnant. But he has learned that if we ever get pregnant again that nodding is not an acceptable response.
My husband and I are older, I am still 39 for a few months, my husband is 44. We are aware of the constantly ticking clock. Our time is passing. We found each other late in life and have been married less than a year. We both want children. We hope that we will be one of the lucky ones.
We have consulted with an RE but because i did get pregnant within 6 months of trying she wants so to try for a minimum of another 7 cycles after the miscarriage before we start anything more intensive. We are in the middle of cycle 5. Our next appointment with the RE is at the end of July.
Our fertility struggles are complicated by my diagnosis and treatment for adrenal Cushing's and now it looks like hypothyroidism.
Currently we share our home with a small black cat who begrudgingly allows us to use the bedroom between 11pm and 7am... but going to bed early or waking up late results in caterwauling like you wouldn't believe.
So, that is my introduction, my story in a nutshell. Thank you to everyone for sharing your stories with me.
Thursday, 11 April 2013
A little grossness for your day
May I begin this post with: EWWWWWWW
It's amazing the things you will read sometimes. Believe me, when I clicked on this article I actually thought it was going to be cocktails I could give my husband to improve his semen for conception. I expected it to have things like wheat grass and zinc and not... well... what it has.
I am home sick again today. The weather here is giving me horrible migraines off and on. I am trying not to take any drugs, but I will be happy when the storm system clears our area. My husband has also taken today off sick. For me being sick still means I have to get work done. I'm currently on a contract and so I don't actually have things like sick days and vacation time. But I do have a really fabulous boss and a very flexible work environment. I am doing some research that I can do at home just as easily as in the office and it allows me to control the light better and lay down when my head gets especially bad.
My second set of blood work came yesterday so my darling husband and I may go out and get that done this afternoon. I would rather get my TSH done right away just in case there is a problem. I think that with having had an adrenal gland removed already I am more susceptible to things like Hashimoto's disease and hypothyroidism because my hormones are unbalanced and my poor right adrenal gland has to work all the time and never gets to take weekends off the way your adrenal gland does. For me there is always the threat of adrenal insufficiency and death if i get run down.
We also have to have our communicable disease blood work done. I am not concerned about this, i know we will both pass with flying colours, but does anyone know what happens to couples who have something like syphillis or hepC? Are they not allowed to use assisted reproductive technologies (ART) or does the staff just use special precautions when dealing with samples from that couple? My understanding is that it has much more to do with the handling of biohazards than anything else.
When I did research my last project that I worked on was on the bacteria that caused syphillis. So hypothetically contracting syphillis was a workplace hazard... just me and the streetwalkers can say that! We actually had one of the lab techs stab herself in the finger with a needle filled with syphillis once. Imagine having to go home to your husband and explain that one. Fortunately I never suffered and injuries of this sort. So we should be good to go for IUI when our time comes.
It's amazing the things you will read sometimes. Believe me, when I clicked on this article I actually thought it was going to be cocktails I could give my husband to improve his semen for conception. I expected it to have things like wheat grass and zinc and not... well... what it has.
I am home sick again today. The weather here is giving me horrible migraines off and on. I am trying not to take any drugs, but I will be happy when the storm system clears our area. My husband has also taken today off sick. For me being sick still means I have to get work done. I'm currently on a contract and so I don't actually have things like sick days and vacation time. But I do have a really fabulous boss and a very flexible work environment. I am doing some research that I can do at home just as easily as in the office and it allows me to control the light better and lay down when my head gets especially bad.
My second set of blood work came yesterday so my darling husband and I may go out and get that done this afternoon. I would rather get my TSH done right away just in case there is a problem. I think that with having had an adrenal gland removed already I am more susceptible to things like Hashimoto's disease and hypothyroidism because my hormones are unbalanced and my poor right adrenal gland has to work all the time and never gets to take weekends off the way your adrenal gland does. For me there is always the threat of adrenal insufficiency and death if i get run down.
We also have to have our communicable disease blood work done. I am not concerned about this, i know we will both pass with flying colours, but does anyone know what happens to couples who have something like syphillis or hepC? Are they not allowed to use assisted reproductive technologies (ART) or does the staff just use special precautions when dealing with samples from that couple? My understanding is that it has much more to do with the handling of biohazards than anything else.
When I did research my last project that I worked on was on the bacteria that caused syphillis. So hypothetically contracting syphillis was a workplace hazard... just me and the streetwalkers can say that! We actually had one of the lab techs stab herself in the finger with a needle filled with syphillis once. Imagine having to go home to your husband and explain that one. Fortunately I never suffered and injuries of this sort. So we should be good to go for IUI when our time comes.
Wednesday, 10 April 2013
Too Stinking High (TSH)
Have I mentioned that I love my RE? If not it bears repeating. I think I might have a little girl crush on her.
I should probably preface this next blog with a little medical background on myself. See.... I'm what is known as a medical freak. I'm a zebra... for those of you who don't immediately understand this reference there is a quote they tell young doctors: When you hear hoof beats think horses, not zebras. Well the problem with that is that some people actually are zebras and I am one of them. The quote is meant to remind young doctors that there is a reason that diseases are classified as rare... that's because no body has them. It is meant to remind young doctors that they are not the future Dr. House finding weird and wonderful, obscure diseases that are given only a paragraph in most medical text books. Most people are coming to you because they have a cold. The common cold.
The problem with this is that many doctor's will disregard all of the symptoms of a disease that is staring them in the face because they have had it beaten into their heads that it is just too rare... that they will never in their practice see a patient with such a rare disease.
About 3 years ago I was diagnosed with Cushing's. This is a disease in which a tumor causes your body to produce a ridiculous amount of extra cortisol - the stress hormone. It causes many delightful symptoms like weight gain, facial hair, high blood pressure, type II diabetes, infertility, etc, etc etc. The problem is that a doctor will look at an overweight woman with high blood pressure and type II diabetes and tell her to just lose weight. Wanna hear the craziest thing about cushings? You can't. You actually can't. They have done studies where they have shown that looking at a picture of a doughnut will actually change your metabolism as though you have eaten it. Now that's a messed up disease.
Cushing's is found in 1:1,000,000 of the population... but wait... there's more... there's an even rarer form called adrenal cushings which is found in only 1:5,000,000 of the population and this is the form i have. As a result I have had my left adrenal gland removed, which can cause a lot of stresses on a body. I wear a medical alert bracelet just in case i suddenly topple over.
Because of this diagnosis I want you to believe me when i tell you i have seen a LOT of doctors. In fact I have seen a LOT of endocrinologists. When I had my surgery the chief of surgery dropped by my room to see, in his words, the "famous patient". No joke. I'm a freaking medical marvel.
Despite all of this I am in awe with my RE because she did something that blew my mind. She checked my test results the second they came in. She called me because my TSH was too stinking high and wants a retest. I find so many doctors will wait until their next consult before they look at your test results. My father drove a car for 6 months after tests showed he was legally blind because his optometrist didn't look at the results. So my RE looked at my results and took action.
You see why I'm a little bit in love?
I should probably preface this next blog with a little medical background on myself. See.... I'm what is known as a medical freak. I'm a zebra... for those of you who don't immediately understand this reference there is a quote they tell young doctors: When you hear hoof beats think horses, not zebras. Well the problem with that is that some people actually are zebras and I am one of them. The quote is meant to remind young doctors that there is a reason that diseases are classified as rare... that's because no body has them. It is meant to remind young doctors that they are not the future Dr. House finding weird and wonderful, obscure diseases that are given only a paragraph in most medical text books. Most people are coming to you because they have a cold. The common cold.
The problem with this is that many doctor's will disregard all of the symptoms of a disease that is staring them in the face because they have had it beaten into their heads that it is just too rare... that they will never in their practice see a patient with such a rare disease.
About 3 years ago I was diagnosed with Cushing's. This is a disease in which a tumor causes your body to produce a ridiculous amount of extra cortisol - the stress hormone. It causes many delightful symptoms like weight gain, facial hair, high blood pressure, type II diabetes, infertility, etc, etc etc. The problem is that a doctor will look at an overweight woman with high blood pressure and type II diabetes and tell her to just lose weight. Wanna hear the craziest thing about cushings? You can't. You actually can't. They have done studies where they have shown that looking at a picture of a doughnut will actually change your metabolism as though you have eaten it. Now that's a messed up disease.
Cushing's is found in 1:1,000,000 of the population... but wait... there's more... there's an even rarer form called adrenal cushings which is found in only 1:5,000,000 of the population and this is the form i have. As a result I have had my left adrenal gland removed, which can cause a lot of stresses on a body. I wear a medical alert bracelet just in case i suddenly topple over.
Because of this diagnosis I want you to believe me when i tell you i have seen a LOT of doctors. In fact I have seen a LOT of endocrinologists. When I had my surgery the chief of surgery dropped by my room to see, in his words, the "famous patient". No joke. I'm a freaking medical marvel.
Despite all of this I am in awe with my RE because she did something that blew my mind. She checked my test results the second they came in. She called me because my TSH was too stinking high and wants a retest. I find so many doctors will wait until their next consult before they look at your test results. My father drove a car for 6 months after tests showed he was legally blind because his optometrist didn't look at the results. So my RE looked at my results and took action.
You see why I'm a little bit in love?
Subscribe to:
Posts (Atom)